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UFO MODEL REPLICATION MANUAL


Acknowlegdements

This manual was created by members of the UFO Studies, Kimberly Page PhD MPH, Principal Investigator. The UFO Studies are based at the University of California, San Francisco and have been working with young adult IDU in San Francisco, CA for the past 15 years.

Alice Asher, Pamela DeCarlo, Caycee Cullen and Clara Brandt wrote the manual. Giuseppe Cavaleri designed the manual and took the photographs. Bob Baxter at North Jersey Community Research Initiative, Newark, NJ; Peter Simpson at Harm Reduction Services, Sacramento, CA; and Rebecca Cabral at the CDC’s Division of Viral Hepatitis reviewed the manual. Several agencies and people in the San Francisco Bay Area shared their experiences working with young adult IDUs and provided advice on how to make this manual useful to agencies: Emalie Huriaux, San Francisco Department of Public Health, Larkin Street, Homeless Youth Alliance, Harm Reduction Coalition. We would like to thank the researchers, staff and participants with the UFO Studies, without whose knowledge and dedication this manual would not have been possible. Special thanks to Loki, Little Jen and Joey for sharing their stories.

This manual was funded by cooperative agreement No. PS08-86204 from the Centers for Disease Control and Prevention.

This manual is available online free of charge at www.ufomodel.org. If you have any questions or comments, please contact us: pdecarlo@psg.ucsf.edu or 415/597-9360. copyright Š2013, University of California, San Francisco


Table of contents Part 1 Introduction How to use this manual ............................................................................................................................... 6 Overview of UFO............................................................................................................................................. 7 The UFO research studies...................................................................................................................... 8 Overview of HCV and young adult IDU.................................................................................................. 9 UFO Model Core Elements, or “what makes UFO work”..............................................................11 Quick ‘n’ Dirty..................................................................................................................................................13 Part 2 Life of a young adult IDU

Issues affecting young adult drug users..............................................................................................16 Mental health ...........................................................................................................................................16 Drug of choice and poly-substance use.........................................................................................17 Relationships, power and risk...........................................................................................................18 Pets and young adult adult IDU........................................................................................................19 Travelers and train-hoppers..............................................................................................................19 Oxycontin as a gateway drug.............................................................................................................20 Young adults in the suburbs...............................................................................................................20 Myth Busting...................................................................................................................................................21 Harm reduction ............................................................................................................................................22 Helpful resources for harm reduction...........................................................................................24 Quick ‘n’ Dirty..................................................................................................................................................25 Young adult voices - Loki’s story........................................................................................... 27 Part 3 Preparing for UFO Understanding your young adult IDU (needs assessment)........................................................30 Needs Assessment........................................................................................................................................30 Helpful resources for conducting a Needs Assessment..........................................................32 Helpful resources for finding data...................................................................................................32 Understanding the political climate ....................................................................................................33 Helpful resources for finding out about and handling local policies................................34 Collaboration..................................................................................................................................................35 Confidentiality................................................................................................................................................36 Helpful resources for confidentiality..............................................................................................37 Incentives.........................................................................................................................................................39 What to look for in staff ............................................................................................................................40 Helpful resources for staffing............................................................................................................40 Quick ‘n’ Dirty..................................................................................................................................................41 Young adult voices - Little Jen’s story.................................................................................. 43 Part 4 UFO Model components Part 4A Outreach and education Outreach...........................................................................................................................................................46 Lessons learned for outreach workers..........................................................................................48 Rules of the Road.....................................................................................................................................48 Confidentiality..........................................................................................................................................49 Education.........................................................................................................................................................50 Helpful resources for conducting outreach and education...................................................51 Appendix 1 - Participant mapping.........................................................................................................52 Quick ‘n’ Dirty..................................................................................................................................................55 Young adult voices - Joey’s story........................................................................................... 57 Part 4B Youth-centered referrals Resource Guide..............................................................................................................................................60 Appendix 1 - Resource Guide template and examples..................................................................63 Quick ‘n’ Dirty..................................................................................................................................................67


Table of contents Part 4C Drop-in center Site services.....................................................................................................................................................70 Meeting before and after drop-in...........................................................................................................73 Helpful resources for drop-in centers............................................................................................74 Appendix 1 - Medical services - SOS at UFO......................................................................................75 Quick ‘n’ Dirty..................................................................................................................................................77 Part 4D Syringe access

Syringe exchange and distribution........................................................................................................80 Drug preparation equipment.............................................................................................................80 Peer exchange...........................................................................................................................................81 Helpful resources for syringe access..............................................................................................81 Pharmacies......................................................................................................................................................82 Helpful resources for working with pharmacies.......................................................................82 Overdose prevention...................................................................................................................................83 Helpful resources for overdose prevention.................................................................................83 Appendix 1 - The DOPE Project “Quick & Dirty” Narcan Training Checklist......................84 Quick ‘n’ Dirty..................................................................................................................................................87 Part 4E Counseling and testing for HCV

Tests to screen and detect HCV...............................................................................................................91 HCV pre-test counseling............................................................................................................................94 General rules for pre-test counseling.............................................................................................94 Important concepts to be addressed by counselor..................................................................95 Risk assessment and risk reduction counseling........................................................................96 Post-test counseling ....................................................................................................................................98 General rules for disclosure...............................................................................................................98 Disclosure of a negative test result..................................................................................................99 Disclosure of a positive test result...................................................................................................99 Key counseling messages related to specific positive test results..................................100 Case studies and general indications for disclosures...........................................................100 Phlebotomy..................................................................................................................................................103 Testing using an HCV rapid test...........................................................................................................104 Helpful resources for rapid HCV test...........................................................................................106 Appendix 1 - Risk reduction plans.....................................................................................................107 Appendix 2 - Training for UFO counselors on pre- and post-test risk reduction counseling...................................................................................................................111 Quick ‘n’ Dirty...............................................................................................................................................117 Part 4F HCV education and support group

Helpful tips for running the group.....................................................................................................121 Session 1: Hepatitis ABCs.......................................................................................................................122 Session 2: Keeping you and your friends healthy: How to decrease HCV transmission risk.......................................................................................128 Session 3: Body and mind: how drugs, alcohol and HCV affect your physical and mental health.........................................................................................133 Session 4: Relationships and risk.......................................................................................................139 Add-on Session: HCV treatment 101.................................................................................................144 Appendix 1 - Handouts and resources..............................................................................................150 Quick ‘n’ Dirty...............................................................................................................................................155 Part 5 Adapting, measuring, tracking

Adapting UFO to fit your community................................................................................................158 Measuring Success....................................................................................................................................162 Tracking and retention............................................................................................................................164 Appendix 1 - UFO contact form............................................................................................................167 Quick ‘n’ Dirty...............................................................................................................................................169


1

Introduction


1 Introduction Who wants this manual? Are any of these issues a concern for young adults (under age 30) in your community? ** ** ** ** ** **

Availability of syringe exchange programs (SEPs) Hepatitis C (HCV) infections

Entry into drug treatment programs

Addiction to prescription opiates (like oxycontin) that turns into injecting heroin Living on the streets or in shelters Increase in drug overdose

If you’re experiencing any of these issues and you’re looking for a way to address them, this manual could be helpful for you. This manual is for service providers working with young adults at risk for HCV who want to start or adapt a prevention and health education program.

This manual outlines the model program: UFO (U Find Out) that has been working with young adult IDU in San Francisco, CA since 1997. The UFO Model is a multi-level intervention that works on the individual level (outreach, counseling and testing, immunizations and referrals), group level (8-week hepatitis prevention education group), and community level (drop-in center, Resource Manual and linkages to youth-specific services).

The overall intention of this manual is to provide you with all of the information you might need to effectively replicate the UFO Model in your own community. HCV is complex, as are the needs of young adult injectors. We hope this manual helps those of you who may have been working with IDU or young adults for years as well as those new to this population.

How to use this manual

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We have compiled this manual based on our many years educating and counseling young adults at risk for HCV. The content has been piloted with young adult IDU and adapted to their specific suggestions and experiences as well as been reviewed by content experts. Throughout the manual, you’ll hear the stories and voices of a handful of young adults who have used

UFO Model Replication Manual

UFO, as well as UFO counselors. Their words often are best for explaining how UFO works.

The UFO program was born out of creativity, and we encourage you to keep that in mind. The UFO Model is not a recipe meant to be followed exactly, but more like a soup that starts with a delicious and nutritious (and evidencebased) broth to which you can add your own ingredients and knowledge created by your agency and your community.

We understand that communities and agencies are different, and acknowledge that many of the components we have provided in UFO may need to be adapted to suit your particular needs. We have tried to acknowledge this throughout the manual. Although social, economic and political climates may be vastly different from place to place, the young adult IDU you will be working with face surprisingly similar challenges. And because some young adult IDU travel across the country, you may even meet some of the same folks we’ve been working with. If you do, tell ‘em UFO says “hey.” The manual is divided into 5 sections. It’s best to read through the entire manual in order, but each section contains important information and ideas that you can go back to as you implement your own program. 1. Introduction (you’re reading it now) **

Overview of the UFO Program and HCV and other health issues among young adult IDUs 2. Life of a young adult IDU **

Get to know young adult IDUs, their lives, their culture, their unique assets and needs 3. Preparing for UFO **

Get to know your own community and the young adult IDU who live there. Understand the topography of health services and where you can best be of help. Assemble and train the right team for your project.

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1 Introduction 4. Implementing UFO – Program components ** ** ** ** ** **

Outreach and education Youth-centered referrals Drop-in center Syringe access Counseling and testing for HCV 4-week education and support group 5. Adapting, measuring and tracking **

How to adapt UFO to fit your community, measuring success and tracking and retention for participants.

What’s a Quick ‘n’ Dirty?

Each section features a one-page Quick ‘n’ Dirty summary at the end that goes over important issues covered. We know that you will be reading and appreciating every single word written in this manual ;). The Quick ‘n’ Dirty pages can be pulled out and used as easy reminders of the important concepts for each section and program component.

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Overview of UFO Our group, UFO, has been working with young adult IDU since 1997. UFO, based at the University of California, San Francisco, is the umbrella name for a series of community-based research studies of HIV, HBV and HCV infections, health consequences of drug use, vaccine feasibility and adherence in young adult injectors in San Francisco. Throughout our research studies, we have consistently provided prevention, education, care and social services, making us the most experienced group in San Francisco in providing hepatitis, HIV and STI prevention services tailored to young adult IDU, a group with few other healthrelated resources or programs tailored directly to them. The UFO Model started in a research setting, but it’s not about research. We noticed right away that the young adult IDUs we saw for our studies had a lot of needs that weren’t being addressed. And we learned that if we wanted them to come back to our studies, we needed to offer products, information and services that they wanted. So the services we provide are based on what young adult IDUs told us they need. We’ve made mistakes and learned along the way, and after 14 years of refining, we have built an effective model of education and prevention around HCV.

“UFO made me much more aware of where I took risks and didn’t. Counseling helped me recognize the patterns”-UFO participant

“There are some things we can’t do. We can’t take them out of their situation. But we can listen. Even if we don’t do anything, maybe just listening and letting them talk and process some of their own experiences will be helpful for them.” – UFO counselor

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1 Introduction

“You know, it’s touchy. They’re [healthcare providers] thinking ‘he’s a drug addict and homeless…’ I can’t blame them. But try to keep an open mind—you can’t throw blinders on, you’ve got to learn. Just work with us, man. We’re really trying.” -UFO participan

“The people that work here are accepting of all. We get a lot of crazies in here, and well, obviously, a lot of users, and just people from every kind of walk of life, so they need to be non-judgmental.” –UFO participant

You might be thinking, “Well, yeah, UFO has all that research money, so of course they can afford to provide all these fabulous services.” Actually, a lot of people don’t know this, but the epidemiology research grants we first received do not allow any money to be spent on services. So we’ve had to be creative in building our services. Just like you. And just like the creative young adults we work with. Below you’ll read a little bit about what the UFO research studies have learned about HCV and young adult IDU.

The UFO research studies

1997-1999: The first “UFO Study” assessed the prevalence of HIV, HBV and HCV infections. We showed high seroprevalence of HCV and reported on HIV and risk factors. 2000-2002: We next began to study young adult IDU prospectively. We assessed HIV and HCV incidence and HBV immunization feasibility conducted over a 2 ½ year period. We showed a high rate of HCV seroconversion (25% per year) and identified important risk factors for HCV seroconversion, including sharing injecting equipment (not just needles). We tested adherence to and effectiveness of an accelerated HBV vaccine schedule. We found that HIV infection among young male IDU was highly associated with sex work. We also found high rates and risk factors for overdose and we explored genderrelated risks.

2002-2013: In 2002, we began more in-depth studies of HCV infection. Using antibody and viral tests, we identify young adult IDU in the very early or acute phase of HCV infection. This phase is very important for many reasons: antibody to HCV does not develop for up to 2 months following infection but HCV virus levels can be very high and risk for transmission is high. Some people with HCV will clear or get rid of HCV virus and assessing infection early allows us to study factors that are associated with viral clearance. 8

As of summer 2013, we have followed 584 young IDU at risk of HCV and detected

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176 new infections. HCV incidence is still high (23% per year). Overall, 15% of participants with new HCV cleared virus spontaneously, but women were four times more likely to clear than men: 35% compared to 8%. This is an important new area to study in order to understand more about this infection. We also found that a high proportion of young IDU who clear the virus, get reinfected and many re-clear again.

We continue to study immune factors in early infection and risks of HCV in injecting partners. We are using the new rapid HCV antibody test and assessing acceptability of this test, and also collecting data that may inform the development of a HCV viral test using blood spots rather than blood collection. All these are factors which will help deliver better prevention and care services to young IDU.

2008-2013: We began UFO Presents! a Centers for Disease Control and Prevention (CDC)-funded program that allows us to expand our services to young adult IDU, by training other agencies that work with young adults and creating this replication manual for agencies across the US.

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1 Introduction Overview of HCV and young adult IDU Why HCV? ** ** ** **

HCV infection is a serious and common blood borne viral infection for which there are no current vaccines and limited prevention HCV is highly infectious and easily transmitted HCV is the leading cause of liver transplants in the US

HCV is 10 times more infectious than HIV

Risk behaviors among young adults Young adult IDU are at high risk for viral infections, such as HIV, HCV and HBV, due to frequent injecting, needle/syringe and other drug preparation equipment sharing, high numbers of sexual partners, and exchange of sex for money or drugs. Street youth who inject tend to have high unemployment, poor education, and high rates of mental illness. Some young adult IDU start injecting at an early age and have little knowledge of prevention strategies. **

Why IDUs?

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HCV infection occurs mostly among active IDU

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In the US, 64-94% of IDU are HCV+

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Globally, an estimated 70% of IDU are HCV+ HCV can be spread through drug paraphernalia (cookers, cotton, alcohol pads, tourniquets, water and anything that blood touches), not just needles and syringes

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37% of HCV infections among young injectors are due to sharing drug preparation equipment

Why young adult IDU? ** ** **

In the past few years, the number of young people who inject has increased across the US Not surprisingly, rates of HCV among young injectors also have increased We have a narrow window of opportunity for prevention among young adults ** ** **

After only 1 year injecting, about 20% of IDU will become HCV+ After 5 years, about 45% will be HCV+ After more than 6 years, 64-94% will be HCV+

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Younger age is an important risk factor for HCV, and young adult IDU report frequent needle borrowing and abundant sexual risk behavior including unprotected sex, multiple sexual partners and transactional sex. Some young adult IDU are homeless (runaways), frequently involved in the illegal street economy, including prostitution, drug sales, theft, panhandling, or selling stolen property.

Street youth experience a large number of negative and traumatic events prior to leaving home, including intergenerational drug abuse, forced institutionalization, and physical or sexual abuse. This contributes further to common psychiatric disorders such as depression and post-traumatic stress disorder (PTSD). High levels of unemployment and incarceration exacerbate these already complicated circumstances.

“A person does not come to us empty. We have a lot of respect for the choices they make. They’re doing these things for a reason. Our job is not to change them, but to offer them more choices.”UFO counselor

“There’s one thing that makes a place like this really work and that’s the genuineness of the people wanting to help you. Because if you don’t got that in a situation like this, you got nothing, you have no communication, you haven’t even passed square one. You have to have people that give a shit, otherwise it will not work.”-UFO participant

Fear and mistrust of public authorities estranges them further, resulting in very high risk of viral infections and other drug-related harms.

Barriers to prevention and care

Substantial barriers exist to providing effective hepatitis prevention and care among young adult IDU for multiple reasons, including mental illness and a health care system with widespread social and structural barriers for IDU. **

Many young adult IDU lack knowledge about HCV transmission and prevention. UFO Model Replication Manual

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1 Introduction **

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Young adult IDUs are often unaware of the existence of health, social, legal and welfare services that could be of help to them. Many do not have health insurance and may not know how to access available services. Services can be perceived by youth as unfriendly to young people. Healthcare, treatment and counseling services for IDU often are designed for adults. Young adult IDUs may have past negative experiences with health services, or may fear judgment from providers. Young adults who live at home may be harder to reach and may not self identify as an injector.

Young adults who begin injecting after addiction to prescriptions such as oxycontin may not be aware of safer injection practices.

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** ** **

Depression, PTSD and other mental health issues are often undiagnosed and untreated, making it difficult for young adult IDU to care for themselves or seek out and maintain healthcare. Young adult IDUs may be in and out of jail, traveling out of state, couch surfing or homeless, which makes it difficult to get consistent care.

Service providers may be reluctant to perform comprehensive testing for HCV and provide treatment for HCV+ young adult IDU. Stigma and denial about injecting and heroin use is high in the suburbs, which can make it difficult for agencies to provide education and outreach. Stigma can also make it difficult for young adults to seek out services in the suburbs.

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1 Introduction UFO Model Core Elements, or “what makes UFO work” Core elements are critical features of a program’s intent and design. Core elements are believed to be responsible for the intervention’s effectiveness, and cannot be changed. Based on our research and our experience, we have boiled the essence of the UFO Model success into four core elements. **

Harm reduction philosophy. Cultural competency, using a non-judgmental approach, diverse staff and clientcentered counseling and referrals **

**

Staff is diverse in terms of personality, background, education and training, including former IDU, nurses, teachers, young adults, activists, counselors ** Counseling is client-centered ** Assuming that young adult IDU can and will learn, understand complex issues and change their behaviors in big or small ways Youth-centered focus. Crafting services only for young adults under age 30 and delivered with youth in mind

**

Collaboration and referrals. Knowing what services are available and working with other agencies helps young adult IDU get their needs met. **

** **

Resource Guide lists acceptable, or quality services in the city. Visiting agencies and talking to staff, can help to know if they’re youth-friendly. Referrals only places that are known have availability and can be trusted to serve participants the way they’d like A good understanding of the landscape of drug use, homelessness and health care allows staff to speak to these issues with direct knowledge and experience

**

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UFO is not open to all IDU or homeless – only under age 30. ** Accessible- Services are located where many young adult IDU live, work and hang out ** Staff is flexible and responsive to the needs of participants, whether it’s helping someone understand their HCV test results, or helping them get their dog out of the pound Outreach and consistency. Understanding the landscape of drug use in your community, being a visible and reliable presence where needed ** **

Outreach workers are known and respected, have a consistent track record and young adults know they can be counted on. Experience = respect. Week after week, as young adult IDU see staff on the street use services, they come to believe that staff have their best interest in mind

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Quick ‘n’ Dirty Introduction

The UFO Model is research-based UFO, based at the University of California, San Francisco, is the umbrella name for a series of community-based research studies of HIV, HBV and HCV infections, health consequences of drug use, vaccine feasibility and adherence in young adult injectors in San Francisco. Since 1997, we have consistently provided prevention, education, care and social services.

The UFO Model is multi-level

UFO is a multi-level intervention that works on the

** individual level (outreach, counseling and testing, immunizations and referrals)

** group level (4-week hepatitis prevention education group)

** community level (drop-in center, Resource Manual and linkages to youthspecific services)

These core elements make the UFO Model successful

** Harm reduction philosophy. Cultural competency, using a non-judgmental approach, diverse staff and client-centered counseling and referrals.

** Youth-centered focus. Crafting services only for young adults under age 30 and delivered with youth in mind

** Outreach and consistency. Understanding the landscape of drug use in your community, being a visible and reliable presence where needed.

** Collaboration and referrals. Knowing what services are available and working with other agencies helps young adult IDU get their needs met.

Be creative!

The UFO Model is not a recipe meant to be followed exactly, but more like a soup that starts with a delicious and nutritious (and evidence-based) broth to which you can add your own ingredients and knowledge created by your agency and your community.

www.ufomodel.org

“There’s one thing that makes a place like this really work and that’s the genuineness of you. Because if you don’t got that in a situation like this, you got nothing, you have no communication, you haven’t even passed square one. You have to have people that give a shit, otherwise it will not work.” -UFO participant

“There are some things we can’t do. We can’t take them out of their situation. But we can listen. Even if we don’t do anything, maybe just listening and letting them talk and process some of their own experiences will be helpful for them.” – UFO counselor

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Life of a young adult IDU

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2 Life of a young adult IDU Life of a young adult IDU People often say that programs need to be “culturally competent.” But what does that mean exactly? For UFO, that means understanding the unique life situations of young adult IDU, and gearing services to their unique needs. In Part 3, we’ll walk you through how to find out what’s happening in your community. Here, we’ll go over some of the things we’ve learned in San Francisco that are key for working with young adult IDU. Below are some examples of how young adult IDU in San Francisco taught us to adapt our program to best fit their needs. ** ** **

Recognizing that our population has extremely high rates of PTSD and depression has made dealing with mental health concerns a priority Knowing that our young adult IDU are frequent travelers taught us to find out various ways to contact our participants for follow-up

Mental health

Young adult IDU have high rates of mental health concerns including anxiety, depression and post-traumatic stress disorder (PTSD), often due to past and current traumatic events in their lives. It is important to consider the importance of mental illness in this population and work with other agencies to provide services for participants. Your staff will also need to understand the role of mental illness in HCV prevention and transmission and have tools to work with clients. 16

Many people with HCV have mental health concerns. One research study

UFO Model Replication Manual

Persons with serious mental health problems and/or substance abuse may be up to 10-times more likely to be infected with HCV than the general population

There are many ways that mental illness and drug use can affect HCV. **

Learning about the relationship our population has with its pets taught us to include animal services as part of our program

These are some of the cultural factors we’ve recognized in our population. What are some of the cultural factors specific to your community?

**

**

of adults with HCV found that most said they had a history of at least one psychiatric disorder, and almost threefourths had two or more disorders. Depression was the most common disorder, followed by PTSD, substance use disorders, bipolar disorder and other psychotic disorders.

First, being mentally unstable can increase the likelihood that you get HCV, or that you transmit it to others **

**

Depression can cause people not to take care of themselves or others ** Other diseases like schizophrenia and manic states can cause a person to take risks that they otherwise would not Second, it is common for people to use drugs as a way to deal with some of their untreated psych issues **

A lot of people who feel sad, anxious, depressed, hear voices or have other psychological symptoms, use drugs as a way to medicate and cover up their problems

Among the tools that are helpful in dealing with mental illness: Referrals. Provide referrals to mental health counseling programs that we have visited and made connections with, to ensure that they are young adult and IDUfriendly.

Emergency help. In San Francisco there are two organizations that provide mental health triage over the phone or in person 24 hours a day. One, Mobile Crisis, is an alternative to calling the police if a participant loses it and can’t be controlled. Mobile Crisis will come and escort the person to the hospital, which is better for them than being picked up by the police. Are there mental health crisis resources in your community?

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2 Life of a young adult IDU often minimal relationships between injection partners. Cocaine users tend to be and experience more violence. They tend to have higher numbers of sexual partners (especially crack users) which increases HIV risk.

Staff education and training. Conduct in-service trainings on issues such as vicarious trauma and violence deescalation. Send counselors to any local mental health trainings and encourage them to bring back materials and share with the rest of the counselors. Check with your local health department to find out about free or low-cost trainings in your area. The Harm Reduction Coalition teaches some great courses as well (harmreduction.org).

Staff safety. Outreach workers always work in pairs. Encourage outreach workers and counselors to use their “spidey sense” and if a situation feels unsafe or potentially volatile, they should leave. Counselors also use their spidey sense and gut feelings if a participant appears unstable or unable to effectively comprehend what is going on. If needed, consider appropriate safety measures and referrals in each individual situation. Pre and post-site meetings. Staff and counselors meet before and after weekly drop-in to discuss any potential upcoming issues (such as a positive test result) and to process what has happened during the counseling sessions. If a participant is known to be violent or unstable, the staff can keep an eye on the participant and the counselor. If a session was particularly hard or draining, counselors can “discharge” and process at the end of the night.

Drug of choice and poly-substance use What drugs IDUs use may change over time, and each has implications for risk behaviors and HCV transmission. **

**

Heroin users. Black tar heroin can only be divided evenly between people when it is in liquid form. HCV is easily transmitted through drug preparation equipment: cookers, water, cottons, even tourniquets/ties. Powder heroin can be very pure and strong, which can lead to accidental overdose. Cocaine users. Cocaine users tend to binge. They also inject much more frequently, are often frenzied, and share syringes more often. There are

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**

**

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Pill users. Pill users tend to be younger, not as experienced using needles and less aware of HCV transmission risks. They also may create their own “cocktails” of pills and other substances with unknown side effects.

Travelers. Travelers tend to drink more alcohol and use a variety of drugs. They are often less strung out. They don’t inject as much, but have less access to clean equipment.

Suburban young adult adults. Young adult IDU who live in suburban areas are more likely to live at home, and are more likely to share needles and injecting equipment than their urban counterparts.

In San Francisco, we see very high rates of polysubstance use (using more than one drug) among young adult IDU. Research shows that polysubstance use significantly increases sexual and drug use related risks. **

Polysubstance users have wider injecting networks (inject with more people) than do people who use one drug. A wider pool of users increases the likelihood of HCV transmission.

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2 Life of a young adult IDU **

**

Polysubstance users inject with people they have known for shorter periods of time than do people who use one drug. They are less likely to talk about their HCV status when they don’t knowing the people they’re sharing with. Drug treatment is complicated by polysubstance use, which means that treatment may be less successful.

Here are some ways to deal with drug of choice and polysubstance use:

Drug preparation equipment. HCV is easily transmitted through sharing drug preparation equipment as well as needles, so counsel participants not to share and we provide sterile equipment.

Individual counseling. Adapt individual counseling messages based on drug of choice. For example, if someone reports shooting crack, they may be shooting up to 25 times a day and, in the spirit of harm reduction, stress the importance of using clean needles. Overdose prevention. There is a greater risk of overdose among polysubstance users. Counsel participants on overdose prevention. Train on and dispense Narcan to participants. Encourage them to never shoot alone, and to use care when shooting after a dry spell or incarceration.

Relationships, power and risk Research shows that for some couples, heterosexual and homosexual, sharing

injecting equipment can be an intimate gesture, and sharing injecting equipment within discordant relationships (where one person has HCV and the other does not) is a bonding act. For many young adult IDU, injecting drugs together is an intimate, personal act that can enhance intimacy. Sharing drug injecting equipment with someone who is close and trusted can be viewed as ‘safer’ in relation to other risks such as threats to physical safety or disruption to the relationship.

Young adult IDU who cannot inject themselves rely on their partner to inject them. Research shows that being injected by someone else is associated with an increased risk of HCV transmission. Also, this could lead to someone being dependent on the person who injects them. Typically, women are less likely to be able to inject themselves and therefore are reliant on their male partners. This reinforces traditional gender patterns in relationships with males taking the more active and dominant role. In relationships where there are issues of conflict and where one partner is dominant, it may be difficult to raise and discuss issues around HCV. If someone gets the virus, there is often anger or blame. This can further inhibit effective HCV management strategies. Addressing risk factors present within relationships is an important aspect of HCV prevention and education. Here are some ways to deal with relationships, power and risk:

Normalize disclosure. Counselors should encourage IDUs to discuss their HCV status, whether positive or negative. Help people learn how to talk about it, so that discussing HCV is normalized among IDU in the community. Partner notification. Counselors may be familiar with partner notification protocols from the world of HIV, so try to adapt those messages for HCV. For participants who have just seroconverted, offer to sit with their partner and help them tell the partner. 18

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Understand ethical issues. Occasionally, you may know that a participant who

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2 Life of a young adult IDU seroconverted is in a relationship with someone who is HCV-negative. You cannot disclose status to their partner, but can encourage them to disclose and offer help with partner notification.

Pets and young adult adult IDU

Young adult IDU often have pet companions. With high rates of depression and PTSD, and low levels of social support, young adults find great comfort and love in their animals. While dogs are the most common pet, we have a number of cats, rats and have had iguanas. To be as welcoming of client’s pets as you are of them:

San Francisco. This research also showed us that travelers had heavy alcohol consumption, drinking alcohol until blackout, polysubstance use, more sexual and injecting partners and needle sharing, sharing drug preparation equipment, backloading syringes and pooling money to buy drugs. Younger travelers were more likely to be HCV-positive than youth who did not travel outside of San Francisco.

The risks we’ve found among our travelers are compounded by the difficulties related to maintaining a relationship with young adult persons who travel frequently. Education and counseling are best provided over time, with important messages reinforced through repetition. Additionally, in this population that tends to distrust authority, it takes time to build the trusting relationship needed to fully understand the extent of risk-taking an individual might engage in. Getting someone in the door once is important, but getting them to return is essential. Among the tools that are helpful in working with travelers:

Suppling dog food at drop-in center. Often, young adult IDU won’t eat until their pets have eaten.

Working with a local veterinary program for the homeless to provide vet care. Advocating for obtaining companion animal licenses, which allows participants to have their animals accompany them on buses when they travel as well as access housing if they decide to settle.

Travelers and train-hoppers

While young adult IDU across the country may have stable housing, in San Francisco, our participants travel frequently. Our research found that almost 2/3 of participants reported traveling outside www.ufomodel.org

The internet. These days, almost everyone, including young adult IDU, use email and social networking websites like Facebook. Keeping in touch with your program participants reminds them of your presence, even when they’re not in town. Open all year. UFO’s weekly drop-in is open one evening a week, 52 weeks a year, including holidays. We don’t want someone to arrive in town, come straight to us and find we’re not there. So we just don’t close. Not on holidays, not if it’s pouring rain, not if there’s an earthquake.

Regular, ongoing groups. UFO offers an eight-week HCV education and support group. Although it’s best if participants can come to all eight weeks in a row, it’s not always possible. Having regularlyscheduled groups means that if someone leaves town, or is incarcerated after Session 4, they can always come back to Session 5 a few months later when the group runs again. Interstate referrals. Over the years, we’ve learned a lot about where our

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2 Life of a young adult IDU participants travel and where they go for resources in other major cities. Knowing a little about what else is out there can help, so if your participant tells you they are heading to New York (or LA, or Seattle, etc), you can tell them where they can get their next vaccine, a clean needle or free health care. These are some of the issues we’ve discovered in San Francisco that have changed the way we provide services. Below are some issues that we’ve heard about in other communities. What issues are pertinent with your participants? How might your program address these?

Oxycontin as a gateway drug

“There needs to be help on an individual basis, but two schools of help: help for the ones who are damaged already and help for the ones who you don’t want to be damaged. I saw that so much, there’s always a very clear line between them, and it was the same feeling as junior high, like the rich popular kids and they were doing things they thought were trendy, or they thought would be fun. And we’re looking at them like what are you guys doing?” – UFO participant

Some young adults, especially in suburban areas, start out stealing prescriptions from the family medicine cabinet as teenagers, and then get addicted to oxycontin. Teens who use prescription opiates such as oxycontin easily make the transition to injecting heroin. As a substitute for oxycontin, heroin is relatively cheap, and the high can last several hours. Some of the consequences of this are: **

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Lack of knowledge. These young adults often have no knowledge about safe injecting practices, or the risk of HCV transmission through drug equipment.

It’s not dangerous. Oxycontin is prescribed by doctors, in their parents’ medicine cabinet, so many young adult adults don’t believe that it’s a dangerous drug. They don’t understand that they can get addicted just like with heroin. Overdose. A young adult shooting heroin for the first time may not know how much drug to use. Heroin is often very pure and a little can go a long way. As a result, young adult injectors may have more accidental overdose. No perceived risk. Young adult adults who live in the suburbs don’t see themselves as being at risk for HCV or HIV. They may see older, urban IDU at the SEPs and think they’re not like that so they aren’t at risk.

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More resources. These young adults may have more money to buy drugs, may have jobs or be in school, are usually housed and may not hang out on the street.

How might these issues inform your program?

Young adults in the suburbs Many young adult IDUs in suburban areas live at home with their parents. Some are employed. They may have more money to buy drugs. They may be managing their drug use, and not see themselves as “addicts” needing services. Some suburban parents may have a history of drug or injecting drug use, or be active users. Some issues around working with young adults who live in the suburbs are: **

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Distance. The suburbs may be 30 minutes to an hour from your agency. Doing outreach there would require a vehicle and an increase in time for outreach workers. Legality. Suburbs may be in different counties than your agency. There may be different laws regarding drug use, syringe possession/exchange or condom distribution from county to county. Accessibility. Young adult IDUs in the suburbs may be harder to find. They may inject alone, or at home and not have a large group of IDU friends. At malls and other places where young adults hang out, it may be difficult to tell who is an IDU and who is not.

Confidentiality. Young adults may not want to be seen with or near an agency that serves young IDUs or conducts syringe exchange for fear of being seen by someone they know. Driving. Young adults in the suburbs may be used to using cars and not have a problem driving some distance for services. Because of confidentiality, they may prefer to drive to another town.

How might these issues inform your program?

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2 Life of a young adult IDU Myth Busting Young adult IDU often are a highly stigmatized and misunderstood community. These misunderstandings, or “myths” about young adult, often homeless people who use drugs can be very damaging to a young adult person’s self esteem, as well as to their ability to access services and live safely on the streets. They can also affect the attitudes and behaviors of people working with young adult IDUs.

Below are some of the myths that we commonly hear in San Francisco. As you conduct a needs assessment and talk to other stakeholders in your community, you may hear these types of myths that may affect the services you provide. What are some of the myths in your community? Myth: These kids are homeless by choice. They should just go home to their parents.

Reality: Many young IDU don’t have a family, they are not welcome at home, have left for reasons such as lack of support or abuse. Some of the parents of young adult IDU may have their own problems with addiction, mental issue or homelessness. Drug use can intergenerational, when parents or extended family introduce the kids to drugs. Myth: Users want to get high

Reality: There are many underlying reasons for people to use drugs like heroin. Many have chronic physical pain issues and don’t have access to doctors.

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Young adult IDU often suffer from some form of emotional and mental pain such as abuse, trauma, PTSD, depression, anxiety. Many IDU know what dose they need and take their daily amount, controlling and managing their drug use. It is important to note, however, that some young adults ARE injecting just to get high and have fun.

“The other day I was walking down the street and I saw one of the kids I work with, Myth: Young adult IDUs don’t want sitting there on the street and services. someone walked by and he said, “Oh that coffee looks Reality: Most young adult IDU need and good, what kind is that?” want help of some kind. But they want They just walked right past, services that are non-judgmental, friendly and you know what? I felt so to youth and understanding of their bad for him. Because I knew situation. Young adult IDU have learned to him and he’s really a nice, be highly guarded, so earning their trust is sincere kid. He’s probably key to helping them access services. compromising his values or Myth: Young adult IDU are incapable of his body to make ends meet understanding HCV. so he can survive on the Reality: With clear explanation, young street. My heart went out to adult IDU can grasp the complexities of him. The guy didn’t even look hepatitis, testing, diagnosis and treatment. at him in the eye. Many of our trained staff have learned things from clients. And then I thought,’ I was like that.’ That surprised me. How Myth: Kids in the suburbs don’t shoot calloused I was before and drugs. how compassionate I could Reality: Rates of young adult IDU are be. It doesn’t cost anything on the rise in urban and suburban to smile at someone, to look areas. Suburban IDU may be more them in the eye. You’re not a likely to live at home and may be less sucker for just acknowledging knowledgeable about safer injecting and them as human beings.” HCV transmission. -UFO counselor What are the myths in your community?

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2 Life of a young adult IDU Harm reduction Harm reduction is an approach to care for drug users that provides a range of services that reduce the negative consequences related to drug use. Harm reduction strategies meet drug users “where they’re at,” whether they are active users or are looking for treatment and want to quit. Harm reduction initiatives including syringe exchange programs (SEPs), safe injection facilities and drug treatment have been shown to reduce morbidity and mortality associated with drug use.

The public health benefits of harm reduction are important, but the environment that a harm reduction approach creates increases your appeal. Creating a safe and non-judgmental environment, and providing the resources most needed by young adult IDU increases the attractiveness of your program, which means more young adults will access and benefit from your services. The Harm Reduction Coalition outlines these principles central to an organization that promotes harm reduction practice: **

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Accepts, for better or worse, that licit and illicit drug use is part of our world and chooses to work to minimize its harmful effects rather than simply ignore or condemn them. Understands drug use as a complex, multi-faceted phenomenon that encompasses a continuum of

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behaviors from severe abuse to total abstinence, and acknowledges that some ways of using drugs are clearly safer than others. Establishes quality of individual and community life and well-being--not necessarily cessation of all drug use--as the criteria for successful interventions and policies.

Calls for the non-judgmental, noncoercive provision of services and resources to people who use drugs and the communities in which they live in order to assist them in reducing attendant harm. Ensures that drug users and those with a history of drug use routinely have a real voice in the creation of programs and policies designed to serve them.

Affirms drugs users themselves as the primary agents of reducing the harms of their drug use, and seeks to empower users to share information and support each other in strategies which meet their actual conditions of use.

Recognizes that the realities of poverty, class, racism, social isolation, past trauma, sex-based discrimination and other social inequalities affect both people’s vulnerability to and capacity for effectively dealing with drug-related harm. Does not attempt to minimize or ignore the real and tragic harm and danger associated with licit and illicit drug use.

Youth and harm reduction

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As noted earlier, young adults are at higher risk for HCV acquisition and are more likely to share injecting equipment. Additionally, younger people have less access to prevention programs. Harm reduction services such as needle exchange programs not only provide young adult IDU with equipment to keep them safer, but serve as points of access for education and treatment. Research suggests that the more times a young adult person gets treated for substance use, over time, they more likely they are to maintain www.ufomodel.org


2 Life of a young adult IDU cessation. Providing harm-reduction based programs for young adult IDU is an important component to facilitating risk reduction in young adult IDU.

Harm reduction and the UFO Model One of the core elements of the UFO Model is a harm reduction philosophy. Another core element is collaboration and referrals. This is how you can operationalize these core elements: **

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Operate a small syringe exchange and distribution on site to ensure participants have access to sterile injecting equipment and drug preparation equipment such as cookers (bottle caps), cotton, alcohol wipes, sterile water, tourniquets and twist ties.

If you cannot provide syringes on site, have referrals, vouchers and other means for participants to get sterile syringes. Agencies can provide sterile injecting equipment.

Know the local pharmacy access, syringe possession and other laws and inform participants. Partner with local clinics and the Department of Public Health to provide referrals for methadone and buprenorphine/suboxone for participants.

Arrange residential treatment. Visit these programs and stay in touch to make sure there are indeed spaces available for participants. Train counselors in overdose prevention education and provide Narcan on site.

Train counselors in relapse prevention counseling as well as risk reduction counseling.

The next section, Part 3 - Preparing for UFO, will discuss conducting a needs assessment before you start your program. The needs assessment will help you figure out how to learn about the various harm reduction policies in your communities.

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Syringe exchange programs (SEPs) SEPs provide free sterile syringes in exchange for used syringes to reduce transmission of HIV, HCV and related diseases among IDU. The first needle exchanges in the US were established in the late 1980s. By 2002 there were nearly 200 needle exchange programs throughout the US. These programs offer a variety of services to IDU, including HIV and HCV prevention education and testing, referrals to drug treatment, primary medical care, and distribution of sterile ancillary drug injection equipment and safer sex supplies. It is important to note that UFO operates as a partner and collaborator with existing SEPs in San Francisco, NOT as competition. We make sure that our dropin center does not happen at the same time as a local SEP.

Are SEPs present in your community? Are these programs funded by your city, or do they operate underground? Which neighborhoods do they serve? What other services do they offer?

Why are SEPs important?

The only way for young adult IDU to prevent getting HCV is by using sterile drug injection equipment. We can’t give that message, yet not give them the tools they need to stay safe. Without providing access to clean syringes, the UFO Model would simply be an education program, but would not work as HCV prevention.

By distributing clean injection equipment and disseminating risk reduction strategies, SEPs have caused a reduction of HIV among IDU. SEPs often serve as the sole access point where IDU, especially young adult IDU, can receive services without judgment, and therefore are a powerful site for service provision and disease prevention to a population that is otherwise difficult to reach. In San Francisco and other cities with strong SEPs, there has been a cultural

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2 Life of a young adult IDU shift; young adult injectors learn how to access clean syringes early in their injection careers, and are quickly informed of safer injection techniques and disease prevention strategies.

Pharmacy sale of syringes

California passed a law allowing pharmacies to sell or otherwise provide needles without prescription in any county in which local officials have authorized needle exchange. Similar laws have been enacted in 21 states across the US. Although young adult IDU frequently report use of SEPs, they also report buying syringes on the street, a potentially more dangerous outlet, as the source and sterility of the syringes is not guaranteed. Pharmacy sales of syringes can make clean needles more widely available to IDU since some pharmacies are open 24 hours a day, as well as potentially decreasing the stigma that can be associated with attendance at an SEP.

Naloxone distribution

Overdose is the number one cause of death among young adult IDU. Overdoses can be prevented, and in regions where Naloxone is available, overdose deaths have decreased. In San Francisco, Naloxone (also known as Narcan) has been available to IDUs and people likely to be around someone who overdoses since 2003, and has saved an estimated 500 lives since then.

NOTE: What are the laws governing pharmacy sale of syringes and Narcan distribution in your community? Where do young adult IDU go to buy syringes? Are pharmacists receptive to young adults purchasing syringes? For help in answering these questions, please see Part 3 – Preparing for UFO.

Helpful resources for harm reduction ** ** ** ** **

Harm Reduction Coalition provides support, training and many valuable resources. harmreduction.org Temple University, Project on Harm Reduction in the Healthcare System. www.temple.edu/lawschool/aidspolicy/ apolicy.htm

CDC’s Prevention among injection drug users (note this site is no longer being updated) www.cdc.gov/idu Chicago Recovery Alliance

www.anypositivechange.org/

The DOPE Project

harmreduction.org/article. php?list=type&type=51

Three-quarters UFO participants have ever witnessed an overdose and half have witnessed an overdose in the past year. UFO provides Narcan and training both at the drop-in site and during street outreach. For more information, please see Part 4D - Syringe access.

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Quick ‘n’ Dirty

Life of a young adult IDU Leave your preconceived notions at the door Young adult IDU often are a highly stigmatized and misunderstood community. These misunderstandings, or “myths” about young adult, often homeless people who use drugs can be very damaging to a young adult’s self esteem, as well as to their ability to access services and live safely on the streets. They can also affect the attitudes and behaviors of people working with young adult IDUs.

Young adult IDU have unique needs based on their life situation

Young adult IDU may have multiple physical, mental and emotional health needs. Learn from your IDU how to adapt your program to best fit their needs. Some of the issues we found in San Francisco include: travelers and trainhoppers, pets, mental illness, polysubstance use, relationships, power and risk. What are the needs in your community?

Harm reduction is an integral part of the UFO Model

** Operate a small syringe exchange and distribution on site to ensure participants have access to clean injecting equipment and drug preparation equipment such as cookers (bottle caps), cotton, sterile water, tourniquets and twist ties.

** If you cannot provide syringes on site, have referrals, vouchers and other means for participants to get clean syringes.

** Develop a list of IDU-friendly pharmacies that will sell syringes.

** Partner with local clinics and the Department of Public Health to provide referrals for methadone and buprenorphine/suboxone for participants.

** Arrange residential treatment. Visit these programs and stay in touch to make sure there are indeed spaces available for participants.

** Train counselors in overdose prevention education and provide Narcan on site.

** Train counselors in relapse prevention counseling as well as risk reduction counseling.

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“This isn’t glamorous, this isn’t fun, you know? I had to go steal cars and do things like that. And that is scary and weird and I got shot at, and I never wanted to do it in the first place, and I don’t ever want to do it again. But when I was on heroin I had only one guarantee, and that’s that I had to wake up and do it again.” –UFO participant

“A person does not come to us empty. We have a lot of respect for the choices they make. They’re doing these things for a reason. Our job is not to change them, but to offer them more choices.” -UFO counselor

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YOUNG ADULT VOICES Loki’s Story I’ve been travelling for 10 years, since 9/11. Been to Louisiana, Illinois, Texas, Florida. I’ve got friends all over the US. I’ve lived everywhere. I travelled with the Grateful Dead for 20 years. I have friends who were born in the parking lot of a show, I know their grandparents. My Dad’s a musician, he and my mom were Dead followers. I’m still mourning Jerry Garcia. I was in Venice Beach when I heard the news. A news van came up to me and asked me “What do you think about Jerry Garcia dying?” That’s how I found out. What do you say to something like that? I just walked away. I’m a lineman, I build fiberoptics. I’m on methadone now, but I’ve got a truck and a job at an air force base in Missouri that’s waiting for me. Four weeks ago I found out I had hep C. I’m in a 6 month window. I have a chance to get hepatitis out of my body. My job’s not going anywhere, so if I could get it out of my system, that’d be awesome. I’m trying to get on interferon. UFO helped me out, they’re showing me how to get treatment. I want to do it. I was prepared over a long period to maybe get hep c. Hey, I’m playing a game. I know I take chances. But it sucked to find out. Now it’s in my face, I have it. But you can’t block it. You gotta get up in the morning, go to your appointments. You’ve got to be on it, you can’t ignore it. I’ve got to be clean, get on SSI, get on anti-depressants. I gotta occupy my time, I get bored when there’s nothing going on – idle hands are the devil’s workshop. I’m my worst enemy, technically. I just gotta worry about myself. I’m trying to get off probation, so I’m by myself a lot. I’m very choosy about who I hang out with. I don’t like a lot of people’s get downs—it’s just them being them—how they make their money. I don’t steal or break into cars. I recycle in the middle of the night. I used to sell pot in front of clubs, but I can’t do that now because of probation. I don’t have no money. Being honest sucks sometimes when you’re broke, but at least you’re not playing yourself. My job now is to stay healthy. I make sure I eat 3 times a day, try to eat healthy. Recycling is good exercise. Try pushing a shopping cart full of bottles uphill— it keeps you pretty healthy, you break a sweat. I’m making an effort, you know what I mean? I try to show up every week at UFO. They’re awesome, dedicated people trying to do good. They need more programs like UFO in other places. I’ve hung out with people that were junkies and now work at these programs. I’ve also seen quite a few die, lose it, not change at all—they get HIV, lose and arm, get abscesses, gangrene. A lot of people would rather be in familiar hells than unfamiliar heavens. My recommendations for anyone doing this work? Learn to be open. Be honest. You’ll see unexpected things and meet unexpected personalities. You’re gonna learn new things. Just work with us, man. We’re really trying.

www.ufomodel.org

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Preparing for UFO

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3 Preparing for UFO Preparing for UFO Understanding your young adult IDU (needs assessment) What is happening in your community? In order to provide HCV prevention services to young adult IDU, it is important to understand the overall context of injection drug use and HCV risk within a given community. There are a vast array of social, economic, and political factors that make a significant impact on their injection practices and risk behaviors. As service providers, it is important to notice the interplay between IDU and their constantly fluctuating constraints so you can continue to meet the changing needs of participants. What are young adult IDU like in your area? Who, what, where – is your target population? Finding out is an important step in your program’s success.

Needs Assessment

Needs assessments can be the initial point of contact with many stakeholders, and present a unique opportunity to begin building trust with young adult IDUs and other members of the community. Taking time to listen to people and hear their concerns can help your program and you gain credibility. The Harm Reduction Coalition’s manual “Guide to Developing and Managing Syringe Access Programs” gives a great overview of conducting a Needs Assessment that is applicable to any type of program that serves the needs of young adult IDU. Using the UFO Models’ core element of collaboration, we’re going to direct you there and not recreate the excellent work they’ve already done. The needs assessment process includes: **

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Identifying all relevant stakeholders. What agencies in your community are working with at-risk or homeless youth, IDUs, hepatitis? Who are the stakeholders in the communities of IDUs and young adults?

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Review of existing data. Does your health department collect data on hepatitis C infection, overdoses, substance use? How about the police department? Does the local education department or college/university have data on drug use among young adults? What about national resources, like the CDC’s Youth Risk Behavior Study (YRBS) that can give data by state and city? Original data collection and analysis. This is what you do in your own community to find out more, and can include **

Face-to-face interviews – with agency staff, health department, well-known community members ** Focus groups – with young adults, IDUs ** Field observations – going to where young adults hang out to understand their needs, visiting agencies and SEPs to see how youth-friendly they are Following are questions to guide you in your needs assessment. Do you have to answer ALL these questions? Certainly not. Some you may not be able to answer until you’ve been working with young adult IDU for a while. But it’s a good idea to go outside your comfort zone and address some of the questions you may not have considered before.

1. Who are the young adult drug users in your area? **

Demographic info: age, race, gender, sexuality.

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Where do they hang out at night?

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Where do they hang out during the day? Where do they sleep?

Where do they go to the bathroom?

Are they relatively stable or frequent travelers? If travelers, where do they come in and out of town?

Where and how do they make money?

2. Substance use ** **

Where do they buy drugs? Where do their drug dealers deal?

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3 Preparing for UFO ** ** ** ** ** ** **

Where do they get syringes and drug preparation equipment? Where do they go to use drugs? What drugs are popular?

What are ways that people administer drugs? Do they reuse syringes/preparation equipment? What is their knowledge of safer injecting practices? How often do overdoses occur? Where do they buy alcohol?

3. What youth-specific services are available? **

Drop-in and one(s) that are youth and/or homeless youth specific?

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Do young adult IDU use these services if they even are available?

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Are there any places that are totally free and do not ask for ID for MediCal/Care, HSF, etc?

Where can a young adult IDU get tested for HIV for free and is it harm reduction based?

Where can a young adult IDU get tested for HCV for free and is it harm reduction based? **

What kind of testing is offered? (ie antibody, PCR, etc) Are there any medical clinics in the area that are harm reduction based?

Free health clinic and one(s) that serves mainly youth?

Free food? Not only free meals like at churches, but hot spots to dumpster dive or pick-up food after a restaurant is closed for the day?

4. What IDU-specific services are available? **

SEPs (legal and underground) including ones that are youth specific?

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Do youth use these services if they’re even available?

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Drug treatment (methadone, bupenophrine, resident facilities)?

5. What community services are available in the neighborhoods young adult IDU frequent? **

Are there churches/community organizations that serve them?

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Are there mentors that do secondary exchange/case management on the street?

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Are there merchants that do not mind their presence? Are there cafes/restaurants that allow them to use the bathroom/give them extra food?

6. What health care services are available? **

What services are available to the uninsured?

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What are the unmet needs of young adult injectors in your area?

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What kinds of incentives do people need in order to participate in services (hot food, vouchers, money, etc.)?

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How prevalent is HCV infection among young adult injectors in your area?

Again, you don’t have to answer ALL these questions. Be creative in gathering information and looking for data. The key is to ask enough questions and talk to enough people so that you’re basing your programs on what young adults really need, and you’re maximizing already existing resources. UFO Model Replication Manual

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3 Preparing for UFO Helpful resources for Helpful resources for finding conducting a Needs Assessment data **

“Rapid Assessment and Response Guide on Injection Drug Use,” World Health Organization - www.who.int/ substance_abuse/publications/en/ IDURARguideEnglish.pdf

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“Guide to Developing and Managing Syringe Access Programs, Module 1: Planning and Design,” Harm Reduction Coalition harmreduction.org/downloads/SAP.pdf

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CDC’s National Center for Health Statistics - www.cdc.gov/nchs CDC’s hepatitis statistics -

www.cdc.gov/nchs/Default.htm

CDC’s youth statistics - www.cdc.gov/ healthyyouth/data/

NIDA statistics on drug abuse -

www.nida.nih.gov/drugpages/stats.html

“Good Questions, Better Answers,” CAPS, UCSF - caps.ucsf.edu/resources/ how-to-manuals/

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3 Preparing for UFO Understanding the political climate Because you are working with young adults and illegal substances, it is crucial to know your political climate and how laws and policies affect young adult IDU. Politics change frequently but even in the short term can have a major impact on your program. You must be willing to change format or content of services to suit the changing needs of participants. Below we outline some positive and negative policies, and how they might influence your program.

It is always a good idea to meet with local law enforcement to discuss your work and let them know you’ll be doing outreach. It helps to bring data on HCV, overdoses or emergency room visits to show that your work is necessary. Be creative: you might get a better reception if you have a referral from another agency that already has a good relationship with police. You might bring along on your visit a young adult who is a former user or a parent of one of your participants, to build empathy.

Case Study In Newark, NJ, the North Jersey Community Research Institute (NJCRI) met not just with the police captain, but with every individual patrol officer. They went to every precinct during shift change and were given 15 minutes to discuss their SEP. In addition, thanks to a donation from HRC, they were able to give every officer a pair of puncture-resistant gloves and every patrol car a small sharps container. “The emphasis when you talk to cops should be that SEPs are for their own benefit,” said Bob Baxter, Director of NJCRI. “You won’t get accidentally stuck, someone may not run from you—it stops some of the confrontations you may have.”

Helpful policies **

Syringe access. Nearly 200 syringe exchange programs currently operate in 38 states, Puerto Rico, Washington DC, and Indian Lands. Both state

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and local jurisdictions authorize and regulate sterile syringe access programs.

Pharmacy sales of syringes. In many states and regions, it is legal for IDU to buy up to 10 needles at a local pharmacy.

Naloxone. In several states it is allowable to prescribe Naloxone to self-identified opiate users to decrease risk of death from overdose.

Good Samaritan laws. These laws allow folks to call 911 for an overdose and not be prosecuted for drug use and are currently in effect in Massachusetts, California, New Mexico.

Negative policies Bad press

An article in a local newspaper or a TV newscast or even a blog post or YouTube video that negatively portrays young adult IDU can affect your program. For example, in 2008, the San Francisco Chronicle published an article which described a small child finding a used syringe in Golden Gate Park. This article, which was actually about coyote sightings at the park (not dirty needles) created a storm of negative publicity for drug users, drug user advocates and services providers working with this population. As a result, local police and social services felt pressure to make homelessness and poverty appear to be on the decline. Near the park, where many young adult IDU live, police were more likely to penalize active drug use. Local laws/policies

Policies that affect young adult IDU can be created through laws, local ordinances and even petitions by concerned citizens. For example, in 2009, San Francisco voters passed an ordinance put on the ballot by residents and merchants of the Haight Ashbury district, where many young adult IDU live and spend time. The “Sit Lie” ordinance made it illegal for anyone to sit or lie on the sidewalk.

As a result, police in areas with large homeless populations (the Haight Ashbury and Tenderloin districts in particular)

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3 Preparing for UFO cracked down on homeless people with far greater severity than usual, increasing the number of quality of life citations and arresting individuals for petty crimes. Possible implications of negative policies **

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Young adult IDUs who travel to San Francisco don’t stay long. Many end up in jail very quickly upon arrival, and others are bullied by police until they concede to leave town.

Homeless IDU keep fewer clean needles on their person for fear of being arrested (regardless of laws that condone the possession of injection equipment if packaged for disposal). Homeless IDU find it necessary to make themselves invisible to police, which also makes them difficult to access by outreach workers, thereby reducing IDUs ability to engage with service providers.

What political issues are affecting young adult IDU in your community?

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Helpful resources for finding out about and handling local policies ** **

Harm Reduction Coalition – news and publications on policies and programs affecting IDUs - harmreduction.org The Project on Harm Reduction in the Health Care System, Temple University Beasley School of Law – Laws on syringe exchange, pharmacy sales, Nalaxone, and other policies affecting IDU, across the US www.temple.edu/lawschool/phrhcs/ phrhcs.htm

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ACLU’s Policing for Healthy Communities – a program that focuses on collaborating with law enforcement. - aclu-de.comcastbiz.net/ phc/

** **

Your own Needs Assessment

Needs Assessment guidelines from HRC - harmreduction.org/ article.php?id=1044

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3 Preparing for UFO Collaboration The many needs of young adult IDU and the practical limitations of working in a community based agency mean that collaborations and partnerships are crucial to your program. Some of you may have developed collaborative relationships with like-minded agencies years ago. Some of you may feel like competition for everdiminishing funds make collaboration difficult. Some of you may be dealing with politics or old grudges/relationships/ histories that have kept you from reaching out. The fact is, when it comes to HCV prevention and young adult IDU, there is plenty of work to go around. No one gains from competition, and everyone gains from collaboration. Your program gets a boost because you’re not duplicating services, and you’re benefiting from other agencies. For example, if your drop-in is open at the same time as a weekly SEP or hot meal, you’re likely to lose participants and frustrate other agencies. “Agencies that work with young adult or IDUs appreciate collaboration because they know how important it is for their clients. We’re all together fighting the good fight.” – UFO counselor

In Part 4B – Youth-centered referrals, we’ll talk more about contacting local organizations and developing a Resource Guide to help with giving accurate referrals for participants. This section will focus more on closer, collaborative relationships you may develop with likeminded agencies.

**

**

**

Testing and vaccinations. The UFO Model includes on-site HCV and HIV testing. Many agencies aren’t able to provide testing, so partnering with an agency, clinic or health department that does HCV testing is a good idea.

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Medical care. In San Francisco, we collaborate with Street Outreach Services (SOS) who provides acute care for participants during dropin. You may work with the local university or training hospital to have interns come to drop-in, or go with an outreach van and provide services. This gives them valuable experience and credits, and helps participants. SEPs. You may be able to work with local SEPs to provide access to clean needles. In return, you might provide HCV testing or education for their participants, or run an education/ support group for young adults at their site.

Collaborations may benefit from having a formal Memorandum of Understanding (MoU). MoUs outline the goals, tasks and responsibilities of each agency. The act of writing an MoU often helps clarify each agency’s role and reinforces the common goal. Please see the Appendix for an example of an MoU.

Tips for successful collaborations **

Why collaborate?

Collaborations are a developed relationship with an agency where you share resources. Collaborations occur over time and require some staff time from each agency. For the UFO Model, collaborations can be useful for the following services:

As funding comes and goes, you may be able to do HIV testing or vaccinations on-site, and can offer that to partner agencies.

**

Give back. Try to think of ways that you can give your collaborating agencies something, along with getting information and referrals from them. Maybe you can share your Resource Guide when it’s completed. Maybe you can give them data (number of participants referred to their agency). Maybe you offer HCV testing and they don’t, so they can refer young adults to your program. Maybe their outreach workers want to partner up with your outreach workers. Designate one person to be the liaison. Having one person be “the face” (or the voice) of your program when interacting with other organizations makes it easier for everyone to remember.

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3 Preparing for UFO Confidentiality You may think that confidentiality issues are only important for research or government work. But respectful engagement with young adult IDU requires understanding, communicating and implementing confidentiality guidelines. This is especially true for agencies whose staff may be former clients, drug users in recovery, peer educators or folks who have been working in the field for a long time. Writing out, discussing and training staff on confidentiality will help their own mental health and may prevent burnout. When we say “all staff,” that includes anyone who will be interacting with participants or have access to the data, including reception staff who may greet participants when they arrive, volunteers, agency supervisors and managers, and public health staff who may look at program data.

Confidentiality for participants. You should understand, have a written policy and clearly explain to participants what types of confidentiality they can expect from you. Be consistent in your policies. Are test results anonymous, confidential, reported to the Health Department? Will staff leave messages on their phones, or speak to their friends/parents/schools about them? Can police access your records? Is what is discussed in counseling sessions completely confidential?

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Use of identifying data. The UFO Model collects contact information that personally identifies an individual for getting in touch with them later for test results and follow-up on vaccinations and testing. To help with confidentiality, you can give each participant an identifying number, and refer to that person by their ID number , not their name.

Approaching participants. At many drop-in centers, young adult IDU wait to see a test counselor or medical provider. They may eat, watch movies, get supplies or hang out while they’re waiting. Always use a participant’s ID number during drop-in, or when there are other participants around. It may seem silly at first, but participants will appreciate your efforts to protect them.

Discussion of participants. Staff should be respectful of privacy and of individuals when discussing specific clients. Staff should be careful not to refer to participants by name during staff meetings or debriefings. For example, a outreach worker can say “One of the young men I saw was having some difficulties today…” as opposed to saying “Oscar was freaking out… .” This is especially important in smaller towns where privacy is more difficult to maintain. Storing and protecting data. All papers, documents, etc. should be kept under lock and key. This could simply be a filing cabinet or desk that locks, or a special locking box. All electronic data should be kept on a secured computer or server and protected by password. Only select staff should have access to the data, such as counselors, supervisors, staff who record or verify the data, and health practitioners. Those who should not have access to the data are: volunteers, other agency staff not directly working with the program, executive directors or agency board members.

If your agency uses laptops, cell phones or other portable computer devices, these should be registered with your agency, encrypted, secured with a password and locked up when not in use. Staff should never store any information about participants on their personal phones, computers, etc.

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3 Preparing for UFO It seems like everyone has a cell phone or mobile computer device these days, and at least once everyone loses it, breaks it or has it stolen. Some folks working in the field may blur the lines between work and home, and use these devices for both personal and work reasons. This is a bad idea. E-mails, texts, chats or calls from participants are confidential and ONLY belong on designated, protected devices.

Social media. Most agencies these days have Facebook pages along with websites, and some use them to contact participants. Be sure to check the privacy settings on your agency FB page to make sure that folks can like your page, but not be able to message other subscribers. Staff should be careful to only friend participants through the agency page, and not their personal FB page. Staff can also set up their own professional page that is separate from their personal page, if they want to use it as an outreach tool.

Helpful resources for confidentiality **

Best Practices in eTherapy: Confidentiality and Privacy – This is a good article that outlines common confidentiality issues.

psychcentral.com/best/best2.htm

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CDC’s Security and Confidentiality Guidelines – This is super technical and probably too much information, but it’s a good document to skim through. www.cdc.gov/hiv/resources/ guidelines/security_confidentiality_hiv. htm

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HIPPA overview in plain words: www.healthliteracy.com/ article.asp?PageID=3789

Outside of the program. Staff may run into participants during their everyday lives, when not working at the program. This can be a common occurrence. The general policy we use is that if you’re out on the street outside of work and a participant recognizes you and greets you, it is OK for staff to chat with them if they feel comfortable doing so. However, outside of work, staff should not approach participants without first being acknowledged. If participants ask for supplies, or information about appointments, staff should remind them of the drop-in times and give them the program phone number. In other words, being friendly is fine, but don’t conduct business if you’re not on the clock.

Friends and family. Your agency strives to provide a welcoming, inclusive and social atmosphere for your participants, which can depend a lot on the personality and attitude of your staff. For the young adults you serve, this is a needed service. For your staff (including volunteers), this is a job. Drop-in and outreach are not times to invite friends or family members to hang out. Even if your friends or family work in similar agencies (say, the local SEP or drug treatment program), they should not be a part of your services. www.ufomodel.org

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3 Preparing for UFO Confidentiality checklist Agencies implementing UFO should answer the questions on this checklist and revisit it periodically.

Does your agency have a written policy on confidentiality? When was this policy last discussed at a team meeting? Has this policy been explained to ** receptionists

** volunteers

** healthcare workers

** secretaries and other members of staff?

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____________ ____________ ____________ ____________ ____________ ____________

Do staff meet to discuss issues in applying the confidentiality policy when they arise?

____________

Do you know your local policies regulating confidentiality of test results and other participant-specific data?

____________

Do you have a locked storage for your confidential files? Who has the key to these files?

____________

Are any laptops, phones or portable computer devices password-protected and locked when not in use?

____________

Is someone responsible for making sure that the confidentiality policy is followed?

____________

Is there a written policy for participants that outlines what level of confidentiality they can expect?

____________

Is your data saved on a password-protected computer or secure server? Who knows the password?

____________

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3 Preparing for UFO Incentives Incentives may be an important part of your program. Providing incentives for the young adult IDU who come to your program is a way of showing them respect, getting participants in the door, and encouraging them to come back. Young adult IDU often live with a lot of chaos and uncertainty. Returning to your program in one week for an HCV test result, or in one month for a second dose of vaccine can be difficult. HCV prevention programs can’t be effective if folks don’t know if they or their partners are HCV+ or not. Your program needs to help participants come back, and providing incentives is one way of doing that. What are young adult IDU like in your community? If there are not a lot of services for them, they may be happy to see you, and incentives aren’t necessary. If they’re mainly living at home, you may use an incentive such as tickets to a concert as a way of recruiting. What works for you? Incentives refer to a gift of some kind given to a participant at a specific time in return for accomplishing a concrete goal. Incentives are different than generally providing a welcoming environment for young adults (having food at dropins, baby-sitting or pet-sitting for group participants). Incentives are not always money. They can meet basic needs or provide simple pleasures.

Research has shown that small monetary incentives are helpful for: encouraging HIV and HCV testing; increasing participation and completion of educational programs; receiving all 3 doses of hepatitis B vaccine; and completing TB treatment. You should work with your participants to find out what incentives are most appropriate and appealing. It’s also a good idea to find out what other programs might be offering. Types of incentives can include: ** ** ** **

Gift cards (for grocery stores, book stores, I-tunes, etc) Telephone cards Transit tokens/passes Movie/concert tickets

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** ** ** **

Goody bags Cash Clothes/socks Vouchers for beauty/health treatments (manicure, massage, acupuncture)

It’s often possible to get local businesses to donate items for incentives, or to offer them at reduced prices. Ask around! In the UFO Model, incentives may be useful for: **

**

Education and support group. You might want to give an incentive to folks who complete all 8 sessions. You could also provide small incentives for each session attended, and a larger one for completing all 8 sessions.

Counseling and testing for HCV and immunizations for HAV and HBV. Again, it can be helpful to provide an incentive to folks who return for their test results and return for their second and third dose on vaccinations.

“If you want to talk to IV drug users, you’re going to have to offer some amount of cash. When you’re on the street, you’re not very trusting. If someone offers you money, they’re offering you a small piece of a livelihood. That can earn you a little trust. Just that. It’s not the cash itself. It’s just the fact that someone has helped you out.” Participant

Incentives are not the only way to encourage participation in your program. The core elements of the UFO Model are necessary for a successful program for young adult IDU: being youth-centered; being reliable and consistent; having useful referrals; and infusing your program with a non-judgmental and respectful harm reduction philosophy. Without these, even the best incentives won’t get young adult IDUs in your door.

Research on incentives

Seal KH, Kral AH, Lorvick J, et al. A randomized controlled trial of monetary incentives vs. outreach to enhance adherence to the hepatitis B vaccine series among injection drug users. Drug and Alcohol Dependence. 2003;71(2):127-131. Kamb ML, Rhodes F, Hoxworth T, et al. What about money? Effect of small monetary incentives on enrollment, retention, and motivation to change behaviour in an HIV/STD prevention counselling intervention. Sexually Transmitted Infections. 1998;74:253-255. Malotte CK, Hollingshead JR, Larro M. Incentives vs outreach workers for latent tuberculosis treatment in drug users. American Journal of Preventive Medicine. 2001;20:103-107.

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3 Preparing for UFO What to look for in staff

“You have to have people that give a shit, otherwise it will not work. You can definitely sense that, when it’s not sincere and people just want to get the hell away from you. You have to get people who really care. It sounds really hokey and stuff, but it’s what hospitals don’t have these days, it’s what medical care doesn’t have these days.” - Participant

Program staff should be selected in particular for their experience as having been outreach workers, counselors, case managers and program coordinators with the target population, if possible. It helps when staff have already built up a wellrespected role as community providers among the target population.

You may find that people who work with at-risk youth or IDUs may have worked at several agencies. With unstable funding and high staff turnover, it’s likely that some of your staff will have been staff at your collaborating partner agencies. Staff may have differing backgrounds: for example, some staff may have worked in HIV counseling or with gangs, and needed training and mentoring to get up to speed with HCV-specific information.

A good outreach worker should be able to efficiently and effectively conduct street “The people that work here and program-based recruitment due to are accepting of all. We get their understanding of community mores, a lot of crazies in here, and knowledge of community resources and well, obviously, a lot of users, referrals, and strong communication and and just people from every counseling skills. kind of walk of life, so they need to be non-judgmental” - What makes a great outreach worker is a willingness to approach members Participant of the target population with a fearless kindness while at the same time carrying themselves with street-smarts and be comfortable in the neighborhood/ community. The best outreach workers have a well honed “spidey sense” that

directs their decision making from the clothes they wear doing outreach to the particular pavement they pound on a given day at a given time.

Your program staff may be young adults or formerly homeless or former or current users, but they don’t have to be. A person of any age or background who is caring, compassionate and knowledgeable can effectively work with young adult IDU.

A training for HCV test counselors is included in the Appendix of this section. More guidelines on staffing are included in Part 4A – Outreach and education.

How can I make sure I hire someone like that?

OK, these are good attributes to look for in staff, but how can you find out if a potential hire has those qualities? In the interview, in addition to going over their resume and experience, engage a potential hire in a conversation. You could ask them to tell you about a time when they felt like they were successful in reaching/educating/building trust with a participant. You could paint a picture of an awkward or potentially difficult scenario with a participant, then ask them “How would you handle this situation?”

At Larkin Street Youth Services in San Francisco, CA, potential candidates go on “shadow shifts” with a current outreach worker or counselor before they are hired. These shadow shifts last 3 hours, and the candidate can hang out at a drop-in space or go out on outreach. This is an excellent way for both you and the potential hire to see if this job is truly a good fit.

Helpful resources for staffing **

“Guide to Developing and Managing Syringe Access Programs, Module 3: Organizational Issues,” Harm Reduction Coalition - harmreduction.

org/downloads/SAP.pdf

**

Street outreach programs for youth, The Exchange, newsletter from HHS Family and Youth Services Bureau - ncfy.acf.hhs.gov/sites/default/files/ Exchange_Street_Outreach.pdf

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Quick ‘n’ Dirty Needs Assessment

Preparing for UFO

It’s important to understand the overall context of injection drug use and HCV risk within a given community. Needs assessments can be the initial point of contact with many stakeholders, and present a unique opportunity to begin building trust with young adult IDU and other members of the community.

Policies matter

Because you are working with young adults and illegal substances, it is crucial to know your political climate and how laws and policies affect young adult IDU. Anything from new laws, bad press or a sympathetic police chief can alter the way you need to provide services in your community.

Collaborations matter

When it comes to HCV prevention and young adult IDU, there is plenty of work to go around and we could use all the help we can get. Collaborating with local agencies and health departments helps you and your participants. To help collaborations run smoothly: ** Give back whenever possible. Collaboration is a two-way street.

** Identify one person to be the liaison to help with recognition

Confidentiality matters

Confidentiality is essential when working with young IDU. All staff must be trained and alerted to issues of confidentiality, privacy and the right to refuse participation. Pay particular attention to: ** Protect data (test results, case notes, etc)

“You have to have people that give a shit, otherwise it will not work. You can definitely sense that, when it’s not sincere and people just want to get the hell away from you.”

** Clarify interactions with participants at your agency and outside during off hours

** Discuss participants only with agency staff and do not use names

** Use only program-specific and password-protected computers, laptops, cell phones, tablets, etc. Do not combine work and personal use on any computers or devices.

Incentives can help

Providing incentives is a way of showing your participants respect, getting participants in the door, and encouraging them to come back.

Staff matters

A good staff member understand community mores, know of community resources and referrals, and exhibit strong communication and counseling skills. www.ufomodel.org

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YOUNG ADULT VOICES Little Jen’s story I know a little bit about all of that [HCV]. I know that they do tests for the actual virus and they do tests for the antibodies. I get my hep C and AIDS stuff mixed up, so don’t quote me on that. When we get our test results back, it’s really cool to get a big list of stuff and go down the list and see what’s negative or positive. They explain it, but it’s pretty clear – there’s a negative column and a positive column. Hep C affects me negatively. I know that I don’t want it because I don’t have a spleen, which I guess is a blood filter before your liver. That’s my un-colleged assessment. UFO works because they pay people. People get stuck in their cycle of behavior. You know, you gotta go make money, you gotta cop, you gotta stay well. It’s hard to find time in your routine to even get to an exchange sometimes. Some people would come if there weren’t money, but not many. What would I do to improve UFO? You mean something that’s real? Make a magical machine that makes your blood just go into the vials, without having to look for veins on junkies. It’s difficult, but we have an awesome phlebotomist, which is really important. It’s like sometimes you go into hospitals and stuff and they can’t find a vein to save their lives, but the ones that we’ve had here are really good at finding weird spots that maybe you can’t reach, so there’s still one there. So that’s really important. My advice? Treat people with respect. The people that work here are accepting of all. We get a lot of crazies in here, and well, obviously, a lot of users, and just people from every kind of walk of life, so they need to be non-judgmental. There’s a nurse here, and that’s cool. Sometimes people come in and they have abscesses, so just having as many services as you can, whatever you can offer all in one place. Because sometimes it’s hard for people to get around and do a bunch of appointments. It’s cool that UFO has sharps container if you want to turn in your dirties here. And they’ve got supplies like needles and stuff, which brings people too. I don’t know of another exchange that’s open at this time, you know. Some people come in for just that. It would be good to network places. Because some people you see once a year or even less than that. But if there was a little booklet that said the different places around the country that had UFO programs, and if you showed up at a different one, they could connect your data with what was over here. They got computers, cell phones, why not? I have a job, a volunteer job that gives me money, so I’m not in the whole routine crap. But I did for a lot of years. That was no good. It was waking up and going to panhandle and going to buy drugs and going to panhandle and going to buy drugs, however fast those two things happened or how many times those happened a day. And you hoped somewhere along the line some person would give you something to eat. And then you would go to sleep or you don’t go to sleep and then you get up and do it again. Hopefully www.ufomodel.org

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YOUNG ADULT VOICES Little Jen’s story there’s an exchange there, or a soup kitchen or something. Hopefully. And then I got to UFO. But that’s what I mean that it’s hard to get out of your little circle unless, well, unless there’s money involved, or the possibility of turning something into money. My least favorite question is what have you been up to. It feels like you’re so exhausted because your day has been so full, but when someone asks what you’ve been up to, there’s nothing to say. It’s really annoying. Tenderloin is my neighborhood. I live in a crack hotel, yay! It’s a good one. It’s not bad. People still do everything they do in other buildings, but they do it in their room, which is amazing. And I don’t have any bedbugs. Only 2 cockroaches the whole time I’ve been there. And I have a ceiling fan and a bathroom, which is amazing, and my own bathtub, which doesn’t happen, so I’m amazed. It’s pretty good. I’m doing everything in my power not to get kicked out of there.

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Implementing UFO: Outreach and education

4A


4A Outreach and education Outreach and education Outreach Outreach and education are at the heart of the UFO Model. Outreach is a way to provide quick education, offer tools and services, reconnect with current participants and bring new participants into your services. In this section we’ll discuss outreach to young adult IDU; outreach to other organizations is covered in Part 4B - Referrals. In San Francisco, the typical UFO participant is a homeless or marginally-housed young adult, so our main approach is street-based outreach.

If your participants are mostly housed and living at home, they may or may not hang out on the street. Some of the strategies in this section may not apply to you, but the advice for approaching young adults may still be helpful.

In San Francisco, we conduct outreach twice a week: once for 1-2 hours right before our drop-in site opens, and another “I’ve been going to UFO for for 4-5 hours on another day. Outreach workers go out in pairs either on foot or seven years. I heard about bikes. Outreach workers also are present it at HAYOT, an addiction at the drop-in site so that new participants services place. A lot of the same folks go there. I heard will see a familiar face. Many outreach about it there, then through workers also are test counselors. friends, then when they’d Strategy walk around downtown and pass out needles and harm In Part 3 – Preparing for UFO, you reduction equipment.” – learned about conducting a needs UFO participant assessment and collaborating with local agencies serving young adults. An important part of that process is finding out where the young adult IDU in your community hang out, and the location of other agencies serving them. These are generally neighborhoods with a high density of young adult activity, involvement in the local drug and sex work economy, and close to other youth service agencies. Outreach workers should have a consistent street presence in these areas. 46

Your needs assessment should also have introduced you to local

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gatekeepers, people who are respected or well known in your community. These people can be invaluable for spreading the word, helping you approach young adults and sending them to your program.

Where can I find homeless young adult IDU?

In addition to using your needs assessment to find neighborhoods where the young adult IDUs live, make money, access services, buy drugs, and generally congregate, here are some little tips that can help outreach workers know where and when to look for folks. ** **

**

Often young adult IDU live under bridges or highway overpasses as well as in public parks. They are usually there at night and early morning.

Whenever you see a mattress on the ground outside, there are often people nearby who have used it. Sometimes these are in small alleys or hidden from the public eye behind buildings. They are usually there at night and early in the morning. During the day, they may be found panhandling on the street, usually in places with high concentrations of tourists or in front of big department stores where there is lots of human foot traffic and plenty of people with money in their pockets. Additionally, the “main drag” of any city or town will usually have its share of young adult IDU spare-changing, singing or

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4A Outreach and education

** **

a positive HCV test and haven’t come in for results

playing instruments for money, or selling goods they make.

**

Where ever you see the detritus of injection equipment, such as the caps of needles, cookers, tourniquets, etc., look around!

If there is a known place where women and men do sex work, post project flyers in the area and take a walk through the neighborhood at dusk to see if any potential clients are there. Use your “spidey sense” to determine if it is appropriate to initiate contact if someone is working.

Recruitment area plan

** ** **

Make an individualized plan for these participants, such as going to the hotel where they’re staying and knocking on their door Any incidents during outreach

Materials for outreach, what you need to order, what folks are asking for

Suggestions for making improving outreach, drop-in site, or other services. For example, because participants often spend a while at drop-in sites, you could offer trainings (overdose and nalaxone, etc.).

Process for outreach

To standardize and increase efficiency of outreach efforts, the UFO model uses a recruitment area plan and mapping exercises. The recruitment plan outlines neighborhoods and specific streets within them to cover during outreach, as well as which agencies operate in that area. An example plan for San Francisco is below. Please see the Appendix for an example of participant mapping.

Before street outreach, program staff (either a supervisor or outreach worker who has clearance to access confidential information) checks to see if anyone is due in for a test result or vaccine. If so, staff checks to see where these participants live or hang out, and makes a note to look for them and remind them to come in if they see them. If there is no contact

Neighborhood

Areas/Streets

CBOs operating in area

Outreach schedule and staff

Downtown

Market Street between Van Ness and Embarcadero

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Roaddawgz

Guiseppe and Caycee

Civic Center Plaza and adjoining UN Plaza

** **

6th St Nedex

Mission St. between 11th and 1st

**

**

To make sure you’re using your time wisely and reaching as many young adult IDU as possible, it’s a good idea to hold outreach meetings on a regular basis (once a month) with outreach workers and supervisor. At the meeting, discuss: ** **

Strategy for outreach areas covered and whether you need to visit new areas

High-priority participants to find, particularly those who you know have

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At The Crossroads (biweekly night outreach)

Wednesday 12-3

BAART Market St. James Infirmary

information, staff can check any other notes to help them locate the participant. See Part 4C – Drop-in for an example of a participant tracking form.

For safety, outreach workers should check in at the program office before heading out to let program staff know where they are going. Below is a sample inventory of what outreach workers should carry with them: UFO Model Replication Manual

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4A Outreach and education **

** **

**

Program materials: **

Business cards or palm cards to hand out ** Posters/flyers and duct or packing tape and pushpins to hang them Cell phone Documentation ** ** **

Personal ID Project ID Agreement with police (if you have it) Referral info

**

UFO Resource Guide (or select pages if it’s too big to carry around) ** Syringe exchange schedules Safer injecting supplies

**

Other supplies

**

** **

**

Syringe and equipment kits (these are pre-made with clean syringes, cooker, etc) ** Snacks ** Hygiene materials ** Socks List of participants who need to come in for tests or vaccines (if this applies to your program) Participant mapping to document outreach done

Marketing outreach

While on outreach you should also be thinking about marketing your program. Bringing flyers, tape and pushpins allows you to post flyers where appropriate. Always introduce yourself and ask permission to post a flyer at agencies. Almost all agencies have bulletin boards for clients. Other places to post flyers are: **

On telephone or light poles

**

Inside bathroom stalls at certain bars

** **

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Inside restrooms in public parks and libraries Other places where young adults shoot up, such as under bridges

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Lessons learned for outreach workers Below are some of the lessons learned we’ve learned after doing street outreach in San Francisco for 14 years. It’s important to have outreach workers read through this section as a brief overview of best practices. This might be especially helpful staff who are new to conducting outreach. NOTE: Never send an untrained, unexperienced outreach worker out on the street. Anyone representing your agency should attend outreach trainings, and new workers should be teamed with an experienced worker.

Rules of the Road

1. Partner up! Always do outreach in pairs for safety. Keep each other in direct eyesight. 2. Carry a phone

3. Dress plainly. Jeans and a t-shirt is fine. Don’t wear flashy jewelry.

4. Trust your gut. If you don’t feel safe, leave.

5. Respect confidentiality of all clients at site and on the street 6. Avoid interaction with the police

Don’t approach if…

There are times outreach workers may see a participant or other young adult IDU on the street and NOT want to approach them. In general, you should vibe it out and always follow your gut. Don’t approach if someone is: **

** **

High and nodding out. If it’s a participant you know, you could sit down next to them and see how they’re doing. But if it’s a new person, don’t interrupt and mess with their high, or they’ll get mad.

Busy and you’d interfere. If they’re panhandling and obviously doing well, or having an argument or fight with someone else. Working and you’d interfere. If they’re selling or buying drugs or looking for customers for sex work. www.ufomodel.org


4A Outreach and education **

**

Hanging out with older adults. If there’s one young adult in a group of much older adults, don’t approach. This is a youth-centered program and you want to focus your time and outreach materials for them. Sleeping. OK, actually you can approach to make sure they’re breathing, but don’t wake them up.

Confidentiality **

** **

Approach participants from the front so that they can see you coming and can acknowledge you first. Don’t yell out someone’s name from across the street. If you see a known participant with unknown friends, don’t mention that the participant comes to your program unless they mention it.

Don’t discuss your participants with other participants. For example, if a participant asks “Hey have you seen _____? Did he come by this week?” just answer that you’re not sure or don’t remember.

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** **

Never mention test results to participants on the street. This should always be done in a safe space with a counselor. Speak softly to your outreach partner so that random passers-by and folks on the street can’t hear what you’re saying.

How do I know if someone is under age 30?

This is a really good question. People who use drugs and live on the street can age very quickly, and sometimes it’s difficult to know someone’s age just by looking at them. Some tips: ** ** **

Use younger outreach workers. It’s easier for young adults to recognize each other. Look at their eyes for crow’s feet or wrinkles. Check with your outreach partner and make sure you both agree on someone’s age.

“You’re constantly dealing with trust issues with them, they’re guarded. They have to search for food and shelter and clothing and deal with rudeness from people all day. As a result they’re very distrustful and suspicious of people they don’t know. So I constantly try to show them that they’re accepted. Not tolerated, but accepted as a human being.” –UFO counselor

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4A Outreach and education Education The main purpose of outreach is to engage young adults and bring them into your drop-in site and services. The secondary purpose is to provide street-based education and services for folks who may not come into your site. Some agencies implementing the UFO Model may not have a drop-in site and may do all or most of their education and counseling on the street or in other public venues. If this is the case in your community, how would you adapt your outreach and education? Go out more frequently? Try to spend more time with young adults you meet? Use a bus or van or some other means to provide some private space or testing, counseling, etc.?

There are lots of good educational materials for learning more about doing outreach (see below), so in the spirit of UFO’s core element of collaboration and referrals, we are going to give you a brief overview and send you to the other resources for further info. Some of the info below was taken from the Harm Reduction Coalition’s manual on syringe access programs.

Four-step approach

1. Give them something they need and want: clean syringes and injecting

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equipment, condoms and lube, food, snacks, socks. If your first step is to offer them something, it gives young adults a reason to talk to you and helps to build trust.

2. Start a conversation. “Hi, how are you doing?” is a good opening. Trust takes time and participants may not feel comfortable talking about personal issues right away, especially in a public or exposed setting that might make them feel vulnerable. Joking and engaging in casual conversation can help establish rapport. People usually have different norms and expectations for interacting with people on the street, as opposed to in a more formal setting. Be open to developing a more laid-back relationship, while also keeping outreach and service-delivery as the priority. The best outreach workers will be able to incorporate safer injection and health messages into conversation in a way that does not feel forced and that takes cues from participants. 3. Invite them to drop-in or other services. Let them know about your drop-in or testing site (if you have one), what hours you’re open, where it is. Then lure them in with what you offer: food, movies, clothes, nurse, counseling, syringes and equipment.

4. Offer materials. Examples: UFO cards, syringe exchange cards, HCV flyers. It’s helpful to give them a small card or brochure to remind them of what you discussed. If you’ve developed a rapport and had a longer conversation, you may want to provide referrals to other services.

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4A Outreach and education What to look for in outreach staff Program staff should be selected in particular for their experience as having been outreach workers, counselors, case managers and program coordinators with the target population, if possible. It helps when staff have already built up a wellrespected role as community providers among the target population.

You may find that people who work with at-risk youth or IDUs may have worked at several agencies. With unstable funding and high staff turnover, it’s likely that some of your staff will have been staff at your collaborating partner agencies. Staff may have differing backgrounds: for example, some staff may have worked in HIV counseling or with gangs, and needed training and mentoring to get up to speed with HCV-specific information. A good outreach worker should be able to efficiently and effectively conduct street and program-based recruitment due to their understanding of community mores, knowledge of community resources and referrals, and strong communication and counseling skills. What makes a great outreach worker is a willingness to approach members of the target population with a fearless kindness while at the same time carrying themselves with street-smarts and be comfortable in the neighborhood/ community. The best outreach workers have a well honed “spidey sense” that directs their decision making from the clothes they wear doing outreach to the particular pavement they pound on a given day at a given time.

Your program staff may be young adults or formerly homeless or former or current users, but they don’t have to be. A person of any age or background who is caring, compassionate and knowledgeable can effectively work with young adult IDU.

the interview, in addition to going over their resume and experience, engage a potential hire in a conversation. You could ask them to tell you about a time when they felt like they were successful in reaching/educating/building trust with a participant. You could paint a picture of an awkward or potentially difficult scenario with a participant, then ask them “How would you handle this situation?”

“Often when we talk to kids, they right away tell us that At Larkin Street Youth Services in San they’re starting treatment, Francisco, CA, potential candidates go on they’re going on methadone. “shadow shifts” with a current outreach worker or counselor before they are hired. I always respond with “Great, is that what you want?” These shadow shifts last 3 hours, and the And they’re shocked when candidate can hang out at a drop-in space I say that. They think we or go out on outreach. This is an excellent want to hear that they’re in way for both you and the potential hire to treatment, but I start with no see if this job is truly a good fit. preconceived notion of what Helpful resources for is ‘good’ or ‘bad’ for them.” –UFO counselor conducting outreach and

education **

**

“Guide to Developing and Managing Syringe Access Programs,” Harm Reduction Coalition - harmreduction. org/downloads/SAP.pdf (page 60, Module 4: Outreach to injection drug users) Street outreach programs for youth, The Exchange, newsletter from HHS Family and Youth Services Bureau

ncfy.acf.hhs.gov/sites/default/files/ Exchange_Street_Outreach.pdf

** **

Outreach to Injection Drug Users, CDC www.cdc.gov/outreach

Street Outreach Good Practices Handbook – United Kingdom Homeless Link - handbooks.homeless. org.uk/streetoutreach

**

Street Outreach Manual – Ottowa, Canada Innercity Ministries www.streetlevelconsulting.ca/ newsArticlesStats/ street_outreach_guide.htm

How can I make sure I hire someone like that? OK, these are good attributes to look for in staff, but how can you find out if a potential hire has those qualities? In www.ufomodel.org

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 Appendix 1: Participant mapping Appendix 1 - Participant mapping One way to help identify crucial streets/ neighborhoods and appropriate times for outreach is with participant mapping. In the UFO Model, a participant map that documents where you went and who you saw is completed for every outreach shift. Outreach workers answer the questions on the front, highlight areas on the map where they’ve gone, and put an X where they met young adult IDUs. They also ask participants to suggest new/different street venues for outreach. On the next page you’ll see the 2-sided map, with questions for the outreach workers on the front, and a map to highlight on the back. Obviously, this is a map of San Francisco, so you’ll need to substitute your own local maps.

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Do I really need to do this every time? We recommend that you do. It may be a pain for outreach workers the first few times they use it, but it will become easier and they will come to see how helpful it is for their work. They’re also good memory aids for outreach workers. Another important consideration is that it’s a good way to document outreach work. Too often outreach is seen as a nebulous, un-scientific component of programs—these maps are a way to show funders and others that you have a strategy and data for your efforts.

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Appendix 1: Participant mapping  UFO Participant Mapping Outreach workers and date: Neighborhoods:

Time span and weather:

Why did you pick this area to do UFO outreach? Flyers posted?

Are there noticeable IDU on the street?

On a random street corner in ______________neighborhood(s), how many people appear to be under 30? Is there drug dealing here? If so, is it pretty noticeable?

What services are around that potential UFO participants might use? Is there a needle exchange in this area? If so, which one?

What is the feeling on the street, i.e. high police presence, violence among street people, shady drug dealing, angry merchants, etc? Did you think this outreach outing was fruitful? Why or why not? Anything else you'd like to add about outreach that you think is relevant? Number of people seen: New= Old=

Total=

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 Appendix 1: Participant mapping

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Quick ‘n’ Dirty

Outreach and education Find the young adult IDU ** Use your needs assessment to find out where young adult IDU live, work and hang out. For homeless young adult IDU, look for typical signs: under bridges, mattress on the ground, used injecting equipment on the ground, tourist areas where panhandling is good.

Document your outreach strategy

Use a chart to plan and track recruitment, as well as maps to document each outreach shift. Review the plan periodically to make sure you’re going where the young adult IDUs are. Don’t forget to ask participants where you should be going.

Be prepared

Make a list of items to bring on outreach and be sure to restock and pack what you need.

Be safe

** Partner up! Always do outreach in pairs for safety. Keep each other in direct eyesight.

** Carry a phone

** Dress plainly. Jeans and a t-shirt is fine. Don’t wear flashy jewelry.

** Trust your gut. If you don’t feel safe, leave. ** Respect confidentiality of all clients at site and on the street ** Avoid interaction with the police

Be respectful

“You’re constantly dealing with trust issues with them, they’re guarded. They have to search for food and shelter and clothing and deal with rudeness from people all day. As a result they’re very distrustful and suspicious of people they don’t know. So I constantly try to show them that they’re accepted. Not tolerated, but accepted as a human being.” – UFO counselor

Confidentiality is important on the street. Always approach from the front so folks can see you coming, don’t call out a participant’s name, and speak softly when you’re discussing business with your partner on the street.

Educate

1. Give them something they need and want: clean syringes and injecting equipment, condoms and lube, food, snacks, socks. 2. Start a conversation. “Hi, how are you?” is a good opening. 3. Invite them to drop-in or other services 4. Offer written material www.ufomodel.org

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YOUNG ADULT VOICES Joey’s story I came to UFO 4 years ago. It was either a friend, fellow IV drug user, or Pam (nurse on site) I don’t remember. It might have been Pam in front of the place, saying come on in. You know how she is? She has taken care of me, she really has. She didn’t even have to. There’s one thing that makes a place like this really work and that’s the genuineness of the people wanting to help you. Because if you don’t got that in a situation like this, you got nothing, you have no communication, you haven’t even passed square one. You have to have people that give a shit, otherwise it will not work. You can definitely sense that, when it’s not sincere and people just want to get the hell away from you. It sounds really hokey and stuff, but it’s what hospitals don’t have these days, it’s what medical care doesn’t have these days. To get people in, especially if you want to talk to IV drug users, you’re going to have to offer some amount of cash. It’s generally best to start it small and say it will increase with participation, but also have it taper again. When you’re on the street, you’re not very trusting. If someone offers you money, they’re offering you a small piece of a livelihood. That can earn you a little trust. Just that. It’s not the cash itself. It’s like being a wild animal, you have to put something in your hand. ‘Cause you feel like a wild animal after a while, you really do. It has to become a resource center because people that are coming in here are going to be looking for things like that, so it’s sensible, kill two birds with one stone. Send ‘em to a place where they can get help if they are positive. Have some type of needle exchange. You wanna have a list of places to eat, shelters. Even if people say they don’t like ‘em, they use ‘em. It’s better to send young people to the youth places, not to the older people places, because most of the people there are creepier and you don’t want to send some young innocent person to a place like that. Here, the food is a good idea because you want to keep track of these people. You want to have a line on ‘em to know what their behavior is like, drug-wise, so you can know how they’re getting infected. What went wrong, why are you in here? Try to find the roots of what went wrong and just, fix it, I guess. Don’t push it on em, but definitely offer services that can reunite them with a family member of their choice. A lot of time people are using drugs because they want to be with their family and they’re not. That is true for me. I have no idea where they are, my family. I don’t know if they still live. That’s something that most people won’t even approach because it’s a real sore subject. But if you can get someone in their family to tell ‘em that they love them, you have them halfway home. And halfway to their family is usually halfway off drugs. There are kids who are on little vacations, runaways whose parents know they’re gone, because they couldn’t control them, and they call them every week and they get Western Union and things like that. They do drugs, too, but those people are never the severe drug users, they’re little dabblers who like to go get drunk and do things that are more innocent. Thank god they do, you know. www.ufomodel.org

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YOUNG ADULT VOICES Joey’s story There’s always a distinct difference between those people and the people, you can see it in their face, they’re hurt, they’re damaged and that’s why they do drugs. It’s not a choice, it doesn’t become a choice after a while, and you just accept it, it’s just part of the whole fucked up life you’ve been living so far, since birth. I had not as bad a life as some kids do at home, but it was pretty fucked up. I was praying to God for a way out of there, and being a kid, you think you’re stuck there. You’re there with your family, and sometimes your family is really messed up. I lived by the train tracks and a train stopped one day, and I was like, “I bet I could get on that.” And some old man that was camped out by the tracks told me how to ride ‘em different places and where they went. I got on the next day and I was gone. I was 13 or 14. This isn’t glamorous, this isn’t fun, you know? What’s different for me is that I have to go steal cars and do things like that. And that is scary and weird and I get shot at, and I never wanted to do it in the first place, and I don’t ever want to do it again. But when I was on heroin I had one guarantee, and that’s that I had to wake up and do it again. I always just went and took something, because I could not stand people. I would be on my knees with my hand out begging for change, and somebody would just spit in my face. They’d spit! Right in my face! Nothing like having your face spit in when you’re that sick makes you want to kill yourself, and kill everyone else, but mostly yourself. You never feel so low. If I was on the street and I had the flu, a guy wouldn’t spit in my face if he knew that, he wouldn’t treat me like that. With the help of many, many strangers (I was saved). Seriously. It was only the real genuine people who really wanted to help me that made the difference. I haven’t had hep C treatment. I got on methadone. I don’t think about it anymore. I lost my taste for it. I’ve seen the truth and now I can’t un-see it. I see the damage I did, to myself and the people that I love, and it’s a heartbreaker. I lost a lot of good accordions. But most of all I traded my culture and my music for heroin for years. So I decided to trade back recently. And that was a good decision. A typical day for me nowadays? I haven’t been using that much. Now it’s an every once in a while thing, so it’s nothing compared to what I used to be like. A typical day for me now is I wake up and I practice my accordion and I practice the flute and I practice a lot of music. Then I go out, try to make money playing music. I go to the methadone clinic, that’s a major part of the day. I’ve got an SRO, it’s better than nothing. I play in different spots, whatever seems good that day. Sometimes it’s raining and I play in covered spots. I’m perfectly happy, I have a girlfriend waiting for me out there, I have a bed waiting at home. I have a lot of good things. I don’t have radiation poisoning. I’m doing alright. I have two accordions, two violins, two flutes, I have all kinds of good stuff, I have everything I need. 58

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Implementing UFO: Youth-centered referrals

4B


4B Implementing UFO: Youth-centered referrals Youth-centered referrals

“It’s better to send young people to the youth places, not to the older people places, because most of the people there are creepier and you don’t want to send some young innocent person to a place like that.” –UFO participant

The many needs of young adult IDU and the practical limitations of working in a community-based agency mean that partnerships with other agencies are crucial to your program. You won’t be able to address all the needs of your participants, so you’ll want to find out who can, and get to know those people and agencies. That way you’ll know that the referrals you give are accommodating and accepting of young adult IDUs. One thing working for you is that it’s a small world. Folks working in the fields of youth, substance use, hepatitis and HIV may move from one agency to another. It’s likely you already know some of the people working at agencies you want to partner with.

Resource Guide

In the UFO Model, referrals go hand in hand with our Resource Guide. The Resource Guide is a book you create that contains information about agencies in your area that provide services that young adult IDU might need. It uses a template to show the same information for each agency, so that you can compare services. The Resource Guide is a way to keep track of partner agencies. All outreach workers as well as other staff should have access to the Resource Guide both in the field and at the program office. It’s best to update the Resource Guide once a year. So, who is in this Resource Guide? By now you’ve done a needs assessment and you have a better sense of what agencies and groups you may want to include. Below we list different types of agencies that may provide services helpful for young adult IDU. These categories are not always quite so clear, and many agencies overlap (a homeless shelter may also have employment training, etc) ** ** ** 60

**

Homeless youth (providing shelter, food, etc) Drop-ins

Syringe exchange or harm reduction agency Medical clinics for youth/homeless persons/non-insured/LGBT

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**

STD clinics

**

LGBT youth

** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** **

Free clinics

Food banks, food serving

Incarceration/juvenile hall Employment training

Methadone clinics/detox/drug tx Case management Transgender

Boys and girls clubs

Ethnicity-specific (serving Latino, Black, Asian, Native, etc) Churches, religious

Street outreach services Women-focused

Art (poetry slams, visual arts, music or dance programs) HCV testing

HIV youth-specific Mental health

Alternative treatment (free acupuncture, massage) for HCV+ and HCV-

OK, now you’ve narrowed down who you want to partner with. How do you go about it? In general, it’s best to designate one person to be the liaison to other agencies. The Resource Guide is a good, structured way to get to know agencies. The template at the end of this section provides an easy guide for asking questions. You may already know some of the agencies, but you should still ask each agency the questions in the template! Sometimes we think we know all about an agency’s services, but things may have changed or we may not know everything.

You may be a bit overwhelmed now and wondering “Why am I doing this again?” The reason is to help the young adult IDU you serve. You don’t want to give them a referral to an agency that doesn’t have any available appointments, or doesn’t provide the services on the day you send them. Trust is crucial with young adults, and your participants won’t trust you if you give them bunk referrals. www.ufomodel.org


4B Implementing UFO: Youth-centered referrals Cold calling If you’re calling up an agency that you don’t know at all, that’s cold calling. When you call, state your name, where you work, what you’re doing (learning more about potential referrals) and that you have some questions you’d like to get answered. Ask who you should talk to, if it’s not the person who answers the phone.

Once you have the right person on the line, ask about each item on the template: **

Name of Agency

**

Website

** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** **

Address Phone

Neighborhood

How to get there (public transportation, walking) Youth friendly

Medical services

Hep A/B vaccines HIV testing Dental Vision

Mental health

Alternative care Trans services

Queer friendly

Language spoken Free?

Drop-in services

There is also a section for additional notes (More). After you fill out the template, read it back to the person on the phone, to make sure it’s accurate. Then, ask if you can come over and check it out for yourself. Offer to give them a copy of the page you’ve put together so that they can see what it looks like.

Agency visit

It’s really best to visit each agency in person at least once to make a connection with the folks working there. You’ll also be able to know first-hand what your participants will experience when they go there. For example, you might visit www.ufomodel.org

a medical clinic and see that they serve all ages during the day, but there is one night a week where they see only youth under age 25. Or you might visit an agency serving food and note that there are no pets allowed. Letting your participants know this information will make it easier for them to access services and will help them build trust in your program. When you get there for a visit, remember to bring a copy of the filled-in template from your Resource Guide to show them. You can ask for a tour and let them know that you’re going to write up what it’s like so that participants have a good idea of what to expect. Remember, everyone working with young adult IDU knows how important it is to have relationships with other agencies. They’ll likely be more than willing to work with you because they know it will help them. For example, if an agency requires clients to show an ID, they will appreciate you letting your participants know ahead of time so the young adults you refer can come prepared.

When you meet the folks working there, a good introduction might be: “I’d like to talk with you about a group we have in common and how we can better serve them.” Be sure to bring any program information materials such as pocket cards and flyers for them to post in an area where clients are seen. At your visit, the agency will also be learning about you and what services you offer if they want to refer folks to you. After visiting the agency, you can fill in the More: section of the template with helpful

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4B Implementing UFO: Youth-centered referrals bits that you learned while you were at the agency. Some examples from San Francisco’s UFO Resource Guide: **

** **

**

They have a wonderful drop-in space with computers, a kitchen, and a place to hang out in addition to all of the medical services listed above. They also offer boxing classes for both girls and boys taught by one of the therapists! You must call after 4pm if you want to talk to a human being on the phone for services, before then it is just a recorded message. They also have drug treatment services, acupuncture, mental health services, some bupe, and basic primary care, Dr. Dan and Mike the therapist rock.

They do an intake and refer the person to the right program for them. The bupe and methadone programs are right upstairs and most of the time the client will be sent right up there for an intake if that’s what they want.

Hookups

“Hookups” refer to informal, usually one time exchange of resources between agencies. Once you’ve done the legwork to get to know agencies in your community, you might be able to occasionally “hookup.” Some examples from San Francisco: **

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We’re friendly with SEPs in the community. Once, an SEP in the East

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**

**

Bay received a huge donation of blankets and couldn’t keep them all, so they called UFO to see if we wanted any. We borrowed a truck from friends and took as many blankets as we could store in our office. We offer them to our participants when the weather turns cold. One of the medical residents who volunteered at our program told her mother about us and the needs of the young adults. Now every time her mother goes shopping at Costco, she buys a pile of tube socks and donates them to our program. We have conducted trainings on HCV basics for outreach staff of other agencies. Agencies often have more money for HIV-related training, and HCV knowledge gets rusty.

It’s alive!

Remember that a referral is a living thing. Referrals don’t end once a participant has been given a phone number or address. Agencies change, people have different personalities, one person’s opinion may not match another’s. Outreach workers and other staff should be encouraged to add or make suggestions to the Resource Guide based on their experience or feedback from participants.

Very occasionally, a participant might tell you they had a bad experience at an agency you referred them to. This will often be that the participant felt disrespected, or didn’t get the services they want. Remember that every story has three sides to it. If you have a relationship with the agency, you may want to call them and without identifying your participant, tell them you got a report back from someone who felt uncomfortable. Approach it in a low key manner—calm and non-threatening, just “I thought you might like to know.” The other agency might appreciate the feedback and opportunity to make adjustments. If you don’t feel comfortable calling the agency, simply make a note, and if you give that same referral again, you can say “We just want to let you know that one of our participants felt a bit uncomfortable when they went there.” www.ufomodel.org


4B Appendix 1: Resource Guide Resource Guide template Name

Address (including phone and website) Neighborhood

How to get there (public transportation) Services

Yes

No

Other

Youth friendly

Medical services Hep A/B vax HIV testing Dental Vision

Trans services

Queer friendly

Language spoken Free?

Drop-in services More:

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4B Appendix 1: Resource Guide Resource Guide example 1 General Forensic AIDS Project (FAP) 798 Brannan St. (Upstairs on top of Mars Bar, entrance on Brannan St. side.) 415-581-3100 www.sfdph.org Neighborhood: SOMA

How to get there: Bus lines 19 or 47 to 7th St. and/or Brannan St. Services

Yes

Medical services

X

Youth friendly

Hep A/B vax HIV testing Dental Vision

X X

Trans services

X

Free?

X

Queer friendly

Language spoken

X

Drop-in services

X

No

Other

Anyone 18 years and older Only while incarcerated in SF county

X

X

X

Can refer

Can refer English, Spanish

More: FAP services are offered to anyone 18 or older incarcerated in the SF jails. Formerly incarcerated HIV+ adults are seen for 90 days post release for follow-up at the office located at 798 Brannan St. If you are locked up in any of the SF county jails and are HIV+ or receive an HIV+ test result while in jail, you are eligible to receive HIV related medical care from FAP’s Center of Excellence while inside. You can also receive case management services for up to 90 days after release from jail. An FAP case manager will meet with you while you are still locked up to begin your post release plans and will discuss with you what services you can connect with in the community. It is important to remember that clients can only access services from FAP if they fit the criteria described above. Their office is not a drop-in, nor a place to receive medical care, prescriptions or supplies. FAP rules.

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4B Appendix 1: Resource Guide Resource Guide example 2 HCV-related St. Anthony Health Free Medical Clinic 150 Golden Gate 415-241-8320 www.stanthonysf.org

Neighborhood: Tenderloin

How to get there: MUNI lines and BART to Civic Center, walk up one block to Golden Gate St. and go right. Antibody test (Elisa) Yes

Viral test (TMA) Yes

Viral load (PCR) Yes

Liver Function Test (LFT) Yes

HCV follow-up care Yes

HCV treatment Yes

More: St. Anthony will do an HCV antibody test and a liver function test (LFT) on anyone at risk. They also do viral load tests (HCV PCR) for anyone who has a confirmed HCV diagnosis. HCV treatment has been provided in the past and is available for certain patients after clinical consultation. They prefer to work with SFGH or CPMC (other hospitals in SF) hepatologists to consult on the treatment, though will provide the treatment and supportive care themselves. Patients do generally have to go to the consulting hospital from time-to-time. Please schedule an appointment with Dr. Sonia Bledsoe if treatment is what is desired.

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Quick ‘n’ Dirty

Youth-centered referrals Partnerships are necessary The many needs of young adult IDU and the practical limitations of working in a community-based agency mean that partnerships with other agencies are crucial to your program. You won’t be able to address all the needs of your participants, so you’ll want to find out who can, and get to know those people and agencies. That way you’ll know that the referrals you give are accommodating and accepting of young adult IDUs.

We need each other

Folks working with young adult IDU likely will be more than willing to work with you because they know that will help them as well.

Let the Resource Guide guide you

The Resource Guide is a way to get to know local agencies and keep track of services provided. Filling out the template for each agency allows you to get a comprehensive view of services and compare across agencies.

Visit agencies

It’s really best to visit each agency in person at least once to make a connection with the folks working there. You’ll also be able to know first-hand what your participants will experience when they go there.

“It’s better to send young people to the youth places, not to the older people places, because most of the people there are creepier and you don’t want to send some young innocent person to a place like that.” – UFO participant

It’s alive!

A referral is a living thing. Referrals don’t end once a participant has been given a phone number or address. Agencies change, people have different personalities, one person’s opinion may not match another’s. Outreach workers and other staff should be encouraged to add or make suggestions to the Resource Guide based on their experience or feedback from participants.

www.ufomodel.org

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Implementing UFO: Drop-in center

4C


4C Implementing UFO: Drop-in center Drop-in center The UFO Model is based on 14 years of experience providing services and prevention education to young adult IDU in San Francisco. For our population, we have learned that a drop-in site is invaluable. Does that mean that every community needs to have a drop-in center? Not necessarily. In this section we’ll describe in detail how we have “The people that work here are accepting of all. We get structured drop-in in San Francisco. At the end of the section, we’ll discuss other a lot of crazies in here, and well, obviously, a lot of users, models for folks who want alternatives. In the UFO Model, the drop-in center and just people from every offers HCV services, as well as provides kind of walk of life, so they need to be non-judgmental.” a safe and nurturing space for our participants who may be hungry, cold and -UFO participant tired or who simply may not feel welcome at places that don’t cater to young adults. As one of our collaborators at Homeless Youth Alliance (HYA) said, “People can listen and be more open to what you have to say if their feet are dry and there’s food in their stomach.” Issues of confidentiality can arise during drop-in. Make sure staff know your confidentiality guidelines, and review with them on a regular basis. See Part 3 – Preparing for UFO for more about confidentiality.

Site services

Site is staffed by nurses, test counselors, outreach workers, a phlebotomist, volunteer clinicians and a field supervisor.

If you have the space and staff to provide a drop-in more than one day a week, that would be great. You don’t necessarily need to provide all the services every day. For example, you could be open five days a week, and have HCV testing on Mondays, medical care on Tuesdays, support group on Wednesday, etc. On site, there are a variety of services: **

Welcoming environment

**

Communication – free phone and internet access

** ** ** ** ** ** ** **

Quality of life – food, clothes, blankets, soap Safer injection supplies

Hepatitis prevention support and education group HBV and HAV vaccines

HIV, HBV, HCV and other STD testing Medical care

Drug treatment referrals

Housing and social service referrals

Welcoming environment

In San Francisco, UFO drop-in is open every Wednesday evening from 5:30 to 8:30 pm. We are open 52 weeks a year, including all holidays; no appointments are needed. All IDUs under age 30 are welcome, regardless of HCV status. We also welcome the partners, children and pets of young IDUs.

Everyone who comes into the site registers at the front desk, signing in with a clipboard. This allows the front desk staff to welcome people, answer any questions and get to know the young IDU. The front desk person should try to determine if the young IDU are interested in medical services, testing, counseling or referrals.

The drop-in takes place at a communitybased site in a neighborhood frequented by young IDU. There is a reception room for participants to hang out, and several

There is a bathroom on site, but no shower facilities (check the Resource Book for showers if requested). We put a locked sharps container in the bathroom. There is a 5-minute limit for using the bathroom. It is a good idea to post someone by the door

It is important to maintain UFO as a youthfriendly environment. Explain to any IDUs over 30 that this is meant to be a safe space for young adults. They are welcome to take food or supplies if they like, but they should not stay.

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private smaller rooms for phlebotomy, medical care, testing and counseling.

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The reception room has chairs, good food set out, a telephone and a television, usually playing movies or cartoons (South Park, The Simpsons).

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4C Implementing UFO: Drop-in center to monitor and make sure no one stays too long (or passes out). You want to have an inclusive and social atmosphere at drop-in, but for your staff (including volunteers), this is a job and not a time to invite friends or family members to hang out. Even if your friends or family work in similar agencies, they should not be a part of your services.

Quality of life The following free resources are available to participants, many of which are donated. **

** ** **

Good food. Although not always hot, substantial meals are donated and delivered by FoodRunners (www.foodrunners.org/ - a service that picks up leftover food from restaurants, caterers, etc and delivers it to the needy). Check out any local free food services in your community. (There’s a FoodRunners in CT now) Clothes. Aolicit donations of clothes and keep them in a bin for participants.

Socks. Socks are very important for homeless youth. We buy or sometimes get donated bulk packages of tube socks. Hygiene supplies. Whenever possible provide soap, shampoo, razors, etc. One suggestion is to ask work

** **

colleagues and friends who may travel to collect hotel shampoo bottles and soaps and donate them to your program. Blankets. During the winter months, provide blankets when possible. Dog food. We provide dog food for our clients’ pets to eat on site and occasionally give food to clients to take home.

Communication

At site, young IDUs can access the Internet, use a telephone for free, and receive mail. Having internet access is also important for staff to look up answers to clients’ question. As an example, UFO was open the day before Thanksgiving and when a participant asked, we used the Internet to find about gay- and youthfriendly free Thanksgiving meal programs.

“UFO is the best. They are really tolerant people. They make an effort to keep us pleased and happy. They’re bending backwards for us, offering movies, food, just come on in. They’re really cool.” -UFO participant

Safer injection supplies

Please see the next section 4D – Syringe access for equipment available at drop-in.

Viral hepatitis prevention education

Periodically at site, there is a weekly viral hepatitis prevention education group led by a counselor and peer educators. Peer educators offer experience and support, while staff provides information and education. Topics covered include Hep C 101, Liver Health for the Active Drug Users, Hepatitis B, Hep C and Mental Health, Treatment Eligibility and Transmission Prevention. Participants are encouraged to meet with HCV counselors for individualized care plans and education. Food and snacks are served at the beginning of group. A Group Facilitators Manual can be found in Part 4F – HCV education and support group.

Immunizations

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Free HAV and HBV vaccinations are available to all participants. Because the HBV vaccine is given in 3 doses, 2 and 6 months apart, we keep a list of the date of vaccine administration and when the next one is due. Street and office-based outreach workers

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4C Implementing UFO: Drop-in center use the list to remind participants to drop in for their next immunization and help participants return.

HIV, HBV, HCV and other STD testing

Through partnerships with other agencies, we offer on-site counseling and testing for HIV, HCV and STIs. Trained counselors perform risk assessments and provide “It has to become a resource client-centered risk reduction counseling. Outreach workers remind participants center because people to return for testing results. Referrals for that are coming in here further workups and appropriate medical are going to be looking treatment are available. for things like that, so it’s sensible, kill two birds with Drug treatment referrals one stone. Send ‘em to a place where they can get At drop-in, interested participants can help if they are positive. get direct referrals to methadone and Have some type of needle buprenorphine/suboxone programs, as exchange. You wanna well as access to residential treatment have a list of places to eat, programs or other programs tailored shelters. Even if people say for drug users. UFO staff works to find they don’t like ‘em, they use the program best suited to participants’ ‘em.” - UFO Participant needs, and works closely with participants before program entry, during program participation and after program completion.

Housing and social work referrals

UFO offers referrals and support for access to housing and other social services, including SSI eligibility, educational and vocational. Staff will work with case managers or other healthcare providers for program participants to help ensure access and uptake of referrals.

rashes and other basic acute medical needs. They also are available for medical consultation, referrals to other medical clinics or mental health care. In San Francisco, we collaborate with the SOS (Street Outreach Services) Project to provide on-site medical care during our drop-in center hours. SOS is a project through the University of California, San Francisco that trains medical students to work with homeless populations.

Finding a medical provider collaborator

Don’t have a nurse or doctor on staff? You can check with local health department and universities to see if there are medical programs that work with youth or the homeless who would be willing to provide services at your program site. Also, many medical schools have interns and residents who may need or want to perform community service. Check with the doctor, nursing, nurse practitioner and emergency medicine departments. This can be an excellent opportunity both for your program and for the medical providers who may be interested in working more with youth. Be sure to create a signed Memorandum of Agreement (MOU) with your collaborators, and schedule an on-site training/orientation before they begin providing medical care. The training should go over how your program works,

More detail about finding and setting up a referral system is in Part 4B – Referrals.

Medical care

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UFO medical staff has many years of experience working with young IDU and have a strong understanding of the particular health needs and concerns of this group. Staffed by a nurse practitioner, a clinical nurse specialist or an RN, nurses provide acute care such as treatment of infections, including abscess care, common respiratory infections,

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4C Implementing UFO: Drop-in center confidentiality rules and emergency procedures. Please see the Appendix for an example of the UFO agreement with SOS.

Meeting before and after drop-in

We have found that it is important for staff to meet before and after the drop-in to prepare for and process the program. All staff should be included in the meetings, including receptionists, counselors, managers and volunteers. There may be issues that affect everyone at the site, not just counselors. This is also an important way for staff to get to know the participants and each other, and to form cohesion.

When working with young IDU, there is always a chance that someone has had a bad day, or is high or hasn’t taken their meds and may be out of control. Outreach staff can let everyone know if a participant is suddenly homeless, or out of jail, or in bad shape. In this way, staffers feel supported and safer and everyone works as a team to help both participants and staff have the best experience possible. Meeting before and after drop-in is one way to provide care and nurturing for staff. Working with young adult IDU can be difficult emotionally. In an ideal world, programs would offer professional individual and group counseling for outreach workers and test counselors. If you can’t do that, meeting after drop-in for checkout is an easy and helpful way to help your staff process and deal with any issues that arise.

Before UFO staff meets for one hour before dropin to discuss all test results that will be given that day and go over any prominent risks or issues for each participant. During this time, counselors can discuss any questions they may have and get support and advice from their peers. It is always helpful to remind staff that all information discussed is confidential.

This is a good time to go over any program issues from the week before, any changes www.ufomodel.org

to the drop-in procedures or other issues in the community that might affect the program. Examples include: **

Introducing new staff, staff out sick, etc.

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Community issues (free veterinary services, closing or opening of other agencies, police activity, etc)

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Any new resources (blankets donated during colder months, dog food, etc)

After

In San Francisco, UFO staff is required to stay after the drop-in closes for what we call “checkout.” We have learned that this is crucial for processing any events from the evening, asking questions and updating each other. The program manager should note any issues that were not fully addressed or any counselors who may need further supervision or support at a different time.

All staffers sit in a circle (or square, or polygon) and each person takes a turn checking in about anything that is on their mind. Each person is allowed to speak, uninterrupted, until they are done, which they signal by saying “check” at the end. The floor is then open to discussion. When every person has checked in, there may be more discussion or a brief education session. Again, it is helpful to remind staff that everything mentioned during check in is completely confidential. We also occasionally provide brief education sessions at pre- or post-site meetings. These sessions may evolve from staff requests or if collaborating agencies are present or offer their services. Examples include: **

Narcan training

**

Needle/syringe distribution statistics

**

Overview/refresher on HAV and HBV vaccines

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4C Implementing UFO: Drop-in center Do we really need a drop-in site? We get it. It’s difficult and expensive to operate a drop-in center. Not every community has the resources to be able to do that. A drop-in center may not be appropriate or necessary for the young adult IDU in your community. But does that mean you completely eliminate the drop-in center? Maybe not.

Share space

When UFO first began in San Francisco, we did not have the resources for a drop-in center, so we shared space with an agency that already had a center for homeless youth, HYA (which was called HAYOT at the time). They agreed to open their dropin space to us once a week to conduct our testing, vaccinations, group and education. HYA recognized that HCV was a concern for their participants, but their focus was on helping youth get off the streets. So they gained some prevention and services for their participants while we gained a site. And we forged a collaboration that still exists today. You may also share space with other agencies that are not necessarily youthcentered. One program knew that a lot of their participants came to a free meal service. The agency met with the folks who ran the soup kitchen and they agreed to let the agency use the space once a week to provide their services after it closed for dinner. In these instances, the participants were already there, so access and timing was easy for them.

Go mobile

Many health departments and SEPs operate mobile vans that deliver services in the community. Some SEPs operate with bicycles. There are lots of methods for reaching young adult IDUs that don’t necessarily involve a roof and four walls. Again, the important thing is to be reliable and develop relationships and trust. If a young adult sees you out on the same corner or same park or same mall every week at the same time, they can start to trust you and connect with you. 74

Another mobile possibility is to make use

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of wireless options: calling, texting, chat rooms, social networking spaces. This may be particularly helpful for programs trying to reach suburban young adults. Some health education programs have used text messaging to remind about appointments, or to send regular prevention messages. Programs have hosted chat rooms, or joined chats to provide prevention messages. Ask your participants what they use and where they go in the virtual world to see if this might be an option for you.

A word on adaptation

Obviously, if you share a space or go mobile, there may be parts of the UFO Model drop-in site that you can’t do. You may not be able to provide medical services if you’re on bicycles, for example. But remember the UFO philosophy of creativity. We’ve seen agencies that do outreach in parks set up a tent so that participants can have some privacy for testing or other medical services. Part 5 – Resources in this manual goes into detail about adapting UFO. The most important activity for your agency is planning. Think through how you will provide drop-in services: what is needed, what you can do and what others can do. You should have a written plan and tweak it if needed as you go along.

Helpful resources for drop-in centers

“Guide to Developing and Managing Syringe Access Programs,” Harm Reduction Coalition - harmreduction.org/ downloads/SAP.pdf - Page 21 “Choosing a site or sites”

“How to open and sustain a drop-in center for homeless youth.” Slesnick N, Glassman M, Garren R, et al. Children and Youth Services Review.

www.ncbi.nlm.nih.gov/pmc/articles/ PMC2440711/

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4C Appendix 1 Medical services – SOS at UFO Appendix 1 - Medical services SOS at UFO In San Francisco, we collaborate with the SOS Project to provide on-site medical care during our drop-in center hours. SOS (Street Outreach Services) is a project through the University of California, San Francisco that trains medical students to work with homeless populations. Below is the UFO agreement with SOS.

UFO/SOS Agreement

This documents the set-up and flow for SOS at UFO’s evening site at _______________ on Wednesday nights from 5:30 – 8pm.

Pre-Site and Set-Up

SOS will provide 1-2 volunteers to work at the suitcase clinic and additionally, for the year 2010-2011, one medical resident. If an SOS volunteer or resident will be late or unable to attend site, they should contact the site medical coordinator, ________, as soon as possible by either calling the UFO Presents phone (415) ________ or sending an email to _______________. The SOS volunteer(s) will bring any supplies needed for re-stocking.

Activities at Site SOS volunteers are responsible for all screening of medical patients and assigning them a medical provider. UFO participants may either self-present to SOS for medical care or may be escorted by UFO counselors to the SOS station. SOS volunteers will not operate the syringe distribution program on site. A UFO volunteer is responsible.

Any incidents involving SOS volunteers or UFO clients must be reported to the site supervisor. SOS volunteers and residents will leave at 8pm. They will clean up the SOS station but leave out medical charts and the red outreach box. UFO staff is responsible for ensuring charts are safely stored in the UFO office at the end of the night. UFO staff will return the outreach box to its storage location. UFO staff will complete and sign the ‘end-of-the-night checklist’ each week. This is to ensure that all SOS property is accounted for, stored, & locked up each week after SOS volunteers leave at 8:00pm.

UFO staff will assist SOS staff to set up a workstation at site. This includes setting up the medical rooms.

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Quick ‘n’ Dirty

Drop-in center

Offer multiple services Young adult IDU often have multiple needs. Your center should offer as much as possible, sort of one-stop shopping. ** Welcoming environment

** Quality of life – food, clothes, blankets, soap

** Communication – free phone and internet access

** Safer injection supplies

** HCV support and education group

** HBV and HAV vaccines

** HIV, HBV, HCV and other STD testing

** Medical care

** Drug treatment referrals

** Housing and social service referrals

About medical care

Check with your local health department and universities to see if there are medical programs that work with youth or the homeless who would be willing to provide services at your program site. Be sure to create a signed Memorandum of Agreement (MOU) with your collaborators, and schedule an on-site training/orientation before they begin providing medical care.

Meet before and after drop-in

Pre- and post-drop-in meetings are important for staff to feel supported and safe, and to build a sense of teamwork that helps both participants and staff have the best experience possible. Before, you can discuss updates on participants, any positive test results to be given or changes to the drop-in. After, counselors can check in and process any encouraging or difficult encounters with participants. NOTE: All of these discussions are completely confidential.

“It has to become a resource center because people that are coming in here are going to be looking for things like that, so it’s sensible, kill two birds with one stone. Send ‘em to a place where they can get help if they are positive. Have some type of needle exchange. You wanna have a list of places to eat, shelters. Even if people say they don’t like ‘em, they use ‘em.” – UFO participant “People can listen and be more open to what you have to say if their feet are dry and there’s food in their stomach.”

Do I really need a drop-in center?

We get it. It’s difficult and expensive to operate a drop-in center. Not every community has the resources to be able to do that. It may not be appropriate or necessary for the young adult IDU in your community. Some alternatives are to share space or go mobile. www.ufomodel.org

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Implementing UFO: Syringe access

4D


4D Implementing UFO: Syringe access Syringe access

“It’s cool that UFO has sharps container if you want to turn in your dirties here. And they’ve got supplies like needles and stuff, which brings people too. I don’t know of another exchange that’s open at this time, you know. Some people come in for just that.” –UFO participant

How can a young adult IDU prevent getting HCV? Stop injecting, don’t share and use sterile drug injection equipment. When we educate young adults and give those messages, we also need to give them the tools they need to stay safe. The UFO Model offers youth-centered referrals for participants interest in treatment to stop using; HCV counseling and testing to encourage participants not to share equipment; and syringe access to help young adults use sterile equipment.

One of the core elements of the UFO Model is a harm reduction philosophy. Three of the ways to operationalize this are: ** **

**

Accept participants without judgment or expectations, and help them stay safe no matter what they are doing. Operate a small syringe exchange and distribution on site to ensure participants have access to clean injecting equipment and drug preparation equipment such as cookers (bottle caps), cotton, sterile water, tourniquets and twist ties. Train counselors in overdose prevention education and provide Narcan for participants.

That said, we understand that providing clean syringes might be complicated in some communities. Local and state laws may limit your ability to do so. If you can’t provide equipment, then you simply must partner with an SEP or other organization that can. This is definitely a time to get creative! Other agencies to look to for access to sterile syringes are: **

SEPs

**

Hepatitis programs

** ** ** ** ** ** ** ** 80

**

Underground SEPs

HIV/STD programs

Homeless organizations Health clinics

Local hospitals VA hospitals

Health departments

Drug treatment centers Pharmacies

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Syringe exchange and distribution At drop-in and during outreach provide clean syringes and drug preparation equipment. At drop-in, it is possible to provide a wide range of products and safely dispose of used syringes brought in by participants. Depending on drug of choice, injecting practices or personal preference, participants in San Francisco have requested: **

**

A variety of needles ** **

Longs – 27 5/8 gauge, 100cc Shorts – 28 gauge and comes in 50 and 100 cc ** Micros – 29 1/2 gauge and comes in 50 and 100cc ** We also have muscling rigs that come in all sorts of sizes starting at 26 gauge BioHazard bucket – Used to house used needles

To protect participants in Sacramento, CA, along with the syringes they hand out a small card that lists the local possession and paraphernalia laws on one side. On the other side is a statement that the syringes were received at their program which is authorized by the county health officer, a phone number to call, and the signature of the program director.

Sacramento also prints up labels so that participants can turn Gatorade bottles into sharps containers. The label clearly states “Sharps container” with a biohazard symbol, and “when full, please deliver to: [the address of the agency].”

Drug preparation equipment

Many participants who come to UFO in San Francisco already know about safer injecting and make an effort to always use clean needles. But they’re often surprised to learn that HCV is transmitted through shared equipment as well. Any item that could have blood on it could be a means of HCV transmission. One research study found that 37% of HCV infections among young IDU in the US are due to sharing

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4D Implementing UFO: Syringe access burning and infection. ** Condoms

** Lots and lots of literature on hepatitis, vaccines, safer injection, avoiding abscesses, treatment options, and needle exchange sites in the area

Peer exchange

drug preparation equipment, not just syringes. Even if your program cannot provide syringes, you can offer the following equipment: **

Cookers – Small metal cups used to cook drugs

**

Cottons – Small cotton pellets (placed in baby Ziplocs) are used to filter drugs

**

** **

** **

Twist ties - Twist ties go around the cooker to provide a handle so the cooker can be picked up easily. A cooker with a twist tie around it both functions as and resembles a spoon.

Water – Sterile water packaged in plastic vials used to mix with drugs to prepare for injection Ties (tourniquets) – Strips of latex used to “tie off” the blood flow near a potential injection site. Ties are used in the same way a phlebotomist uses a tourniquet – to get the vein ready to be punctured. Alcohol pads – Used to clean the injection site

Breakdown – Vitamin C powder/ Ascorbic acid packaged in baby Ziplocs. Used to breakdown crack for injection.

Other safety items we provide that are not related to injection are: **

Crack pipe covers – Rubber fashioned to fit over the mouthpiece of a crack pipe. Used to protect the lips from

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Peer delivered syringe exchange (PDSE), also known as satellite exchange, refers to assigning and training a regular participant to bring clean needles, equipment and education back into their community to hand out to users who don’t come to your program. This strategy can be particularly helpful with young adults, who tend to have strong networks of friends and may prefer to receive needles and equipment, as well as prevention messages, from “But they [local agency] don’t their peers. It’s helpful with participants hand out needles. They have who live in the suburbs or far from your waters in case you need it for agency. And it’s a way to provide support wound care or something, to young adults even when your program but they don’t even hand out is not open. cookers or cotton. Like the needles I understand, but the HRC has a great PDSE Toolkit that you other stuff? You gotta meet can use to set up a program and train people where they’re at.” – participants (see below). UFO participant

Helpful resources for syringe access ** ** ** **

**

Harm Reduction Coalition provides support, training and many valuable resources. harmreduction.org Temple University, Project on Harm Reduction in the Healthcare System. www.temple.edu/lawschool/aidspolicy/ apolicy.htm

CDC’s Prevention among injection drug users (note this site is no longer being updated). www.cdc.gov/idu/

Any Positive Change from the Chicago Recovery Alliance offers videos and free handouts on safer injecting, overdose and hepatitis. anypositivechange.org

North American Syringe Exchange Network (NASEN) SEP database. www. nasen.org/programs/

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4D Implementing UFO: Syringe access **

Kaiser Family Foundation, Sterile syringe exchange programs, 2011.

www.statehealthfacts.org/ comparetable.jsp?ind=566&cat=11

**

Harm Reduction Coalition, Resources map - harmreduction.org /

**

HRC’s Peer Delivered Exchange Services Toolkit - harmreduction.org/

userdata_display?sortby=&modin=50&st ate=WV&search=Search

issue-area/issue-drugs-drug-users/pdsetoolkit/

Pharmacies Pharmacy sale of syringes is legal in many states, although depending on the region there may be certain restrictions (such as limited number of syringes to purchase at a time). Pharmacies can be excellent sources for sterile syringes: they are located in most neighborhoods, are open extended hours, have trained professionals who can offer health care advice, and some also take used syringes for safe disposal. Many pharmacies and pharmacists are willing and want to help with HCV and HIV transmission in their community, even if there is no legislation.

There are many ways your program could include local pharmacies to increase access to sterile syringes for young adults, especially if you are not able to provide syringes. It might be worth exploring setting up a working relationship with a local pharmacy. For example, some organizations serving IDU worked out a deal with local pharmacies so that they could give out vouchers for participants to take to the pharmacy for free syringes. The simplest way is to refer participants to the most appropriate pharmacies. **

**

Do an inventory. What pharmacies are in the neighborhoods where the young adults live and hang out? What time are they open? How much do syringes cost? Test out pharmacies. You could send an outreach worker to each pharmacy to see how easy it is to buy syringes. Are pharmacy staff welcoming? Do they require you to say you’re diabetic, sign a book, give your address?

Helpful resources for working with pharmacies ** **

CDC’ Access to Sterile Syringes www.cdc.gov/idu/facts.htm

Temple University Project on Harm Reduction in the Health Care System - www.temple.edu/lawschool/aidspolicy/ apolicy.htm

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4D Implementing UFO: Syringe access Overdose prevention Overdose is the number one cause of death among young adult IDU. Overdoses can be prevented, and in regions where Naloxone is available, overdose deaths have decreased. In September 2011, Massachusetts’ pilot Narcan (Nalaxone) program marked the 1,000th overdose reversal since the program was introduced in 2007. In San Francisco, ¾ of UFO participants have ever witnessed an overdose and half have witnessed an overdose in the past year. The UFO Model provides Narcan and training both at drop-in and during street outreach.

Nalaxone requires a doctor’s prescription and can be administered through injection or nasally. In general, participants who want to have Narcan must first register and go through a 10-20 minute training before receiving a kit with two doses of Nalaxone. In San Francisco, we work with the Drug Overdose Prevention & Education (DOPE) Project, one of our many excellent collaborators, to provide the Narcan supplies and train our staff. Please see the Appendix for the DOPE Project’s Quick & Dirty Narcan training. Even if you cannot provide Nalaxone, this training is helpful for education on what to do if you witness an overdose.

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Helpful resources for overdose prevention ** **

The DOPE Project harmreduction.org/ our-work/overdose-prevention/

Opioid Overdose Prevention information from Massachusetts Department of Health and Human Services -

www.mass.gov/eohhs/consumer/ wellness/alcohol-tobacco-drugs/alcoholdrugs/opioid-overdose-prevention.html

**

Opioid Overdose Prevention information from New York Department of Health - www.health. state.ny.us/ diseases/aids/harm_reduction/ opioidprevention/

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4D Appendix 1 Narcan/overdose training Appendix 1 - Narcan/overdose training The DOPE Project “Quick & Dirty” Narcan Training Checklist 1. Sign-in Sheet: full name, mother’s name, date of birth (unique identifier code)

2. Mechanism of overdose: when someone dies it’s because their breathing slows to the point where they stop getting enough oxygen to stay conscious, and without air, eventually the heart stops. With an upper overdose, the heart stops, or person has seizures or stroke. 3. Risk Factors:

** Mixing: opioids with alcohol/pills, or cocaine  Prevention: use one drug at a time, don’t mix highest risk ones. ** Tolerance: exiting jail, hospital, detox, esp. methadone detox  Prevention: use less when tolerance at these times. ** Quality: unpredictable  Prevention: tester shots, use reliable/ consistent dealer. ** Using Alone: behind closed, locked door, where cannot be found, esp. in SROs.  Prevention: fix with a friend. Leave door unlocked. Call someone. ** Health: liver, breathing problems (asthma), compromised immune system, active infections, lack of sleep, dehydration, malnourishment all increase risk of OD  eat, drink, sleep, see doctor, carry inhaler, treat infections, etc. 4. Recognition: The line between high vs. overdosing: unresponsive. Other signs to look for: slow, shallow breathing, pale, blue, snoring/gurgling for opiate OD; chest pains, difficulty breathing, dizziness, foaming at the mouth, lots of sweat or NO sweat, racing pulse, puking, seizures, loss of consciousness for stimulant OD. 5. Response (upper/stimulant OD):

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** There is no antidote to a stimulant OD, like Narcan—call 911 if you see the signs of a seizure, heart attack or stroke. ** If the person is still conscious, have them sit. Loosen any clothing around waist, chest and neck. ** Breathing into a bag can help reduce panic and hyperventilation. Make sure they are getting some air and the room is ventilated (open a window if you have one!) Benzos (like ONE benzo) can help with overamping, similar to a panic attack. This is what they would give you if you went to the ER. ** If they are having a seizure, make sure there is nothing within reach that could harm them (objects that could fall, furniture they could bump themselves on, etc). ** Do not hold the person down, if the person having a seizure thrashes around there is no need for you to restrain them, just make sure objects are out of the way. ** Do not put anything in the person’s mouth. Contrary to popular belief, a person having a seizure is incapable of swallowing their tongue so you do not have to stick your fingers or an object into their mouth.

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4D Appendix 1 Narcan/overdose training ** Do not give the person water, pills, or food until fully alert ** If overheated and/or they have stopped sweating, cool them down with ice packs, mist or fanning. ** If they pass out or become unresponsive, open their airway and immediately call 911! ** If the person is unconscious, check for breaths/pulse. Begin rescuebreathing/CPR if needed! 6. Response (downer/opiate OD): ** ** ** **

Noise: call name, yell “cops, or I’m going to narcan you!” Pain: shake, slap, sternum rub. Airway: head tilt, chin lift. Check breathing and clear airway (check for syringe caps, undissolved pills, cheeked Fentanyl patches, toothpicks, gum, etc.) 7. Recovery Position: put person on their side if you have to leave them alone to call 911. 8. Calling 911:

** Say: (location), “someone is unconscious, not breathing.” Not: “overdose.” ** Cops in SF generally do not arrest; there to help paramedics and 1st to respond in medical emergency. ** Narcan only works on opiates, not benzos or alcohol. Need 911 as backup. 9. Rescue Breathing

** If you’re alone with the overdosing person, start rescue breathing and then go get narcan after you’ve given a few breaths. If you’re not alone, start rescue breathing while other person goes to get the narcan. ** Head tilt, chin lift ** Look, listen, feel: to see if chest rises/falls; listen/feel for breath. ** Two breaths: normal sized, not quick, not a hurricane! ** One breath every five seconds (count one-one thousand, two-one thousand…) ** Explain need: brain damage/death after 3-5 min. without oxygen to brain, ambulance may take longer, have to breathe for person until narcan kicks in or paramedics arrive. 10. Administering IM Narcan

** Assembling shot: remove cap on vial, draw up 1cc of Narcan into muscling syringe. ** Site location: arm (deltoid), thigh, butt. Shoot into muscle, not vein, not abscess. ** Administering shot: clean with alcohol wipe (if available). Insert at 90° angle. Push in plunger. ** Administering Nasal Narcan

** Pull off yellow caps, screw spray device onto syringe ** Pull red cap of the vial of Narcan and gently screw into bottom of syringe ** Spray half of vial up one nostril, half up the other

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4D Appendix 1 Narcan/overdose training 11. While you’re waiting for the narcan to kick in… ** Start rescue breathing again, until you see the person start to breathe on their own. ** Wait 2-3 minutes (it seems like forever!) until you give a second dose of narcan. Give it a chance to work, it doesn’t always work instantaneously. ** If you get no response after 2-3 minutes, give a second dose and start rescue breathing again. If there is still no response, continue breathing until paramedics arrive and let them take over, and if you haven’t called 911 yet, do it now! There could be something else wrong, they may have taken different drugs that narcan doesn’t work on, or it could be too late for narcan to work. 12. Aftercare:

** Takes several minutes to kick in; wears off in 30-45 minutes ** Person won’t remember overdosing; explain what happened ** Don’t allow to do more opioids--will be wasting drugs, could OD againNeed to watch person for at least an hour ** Could need to administer another dose of Narcan 13. Narcan care:

** Keep out of sunlight, and keep at room temperature (not too hot, not too cold—don’t put in fridge!) ** Expires in about two years—date will be on your narcan itself. 14. Logistics: ** IM Narcan Kit contents: 2x 3cc musclers, 2x 1cc vials of narcan, prescription card ** Nasal Narcan Kit contents: 2 doses of 2cc Narcan with Atomizer device, prescription card, instructions ** Complete Clinical Registration and fill out prescription card and stickers for Narcan. ** Legality: cops know about program, should not harass or confiscate, contact DOPE if they do ** Follow-up: come back for re-fill if used, lost, or confiscated

The DOPE Project is a program of the Harm Reduction Coalition (www. harmreduction.org). updated 7/2011

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Quick ‘n’ Dirty

Syringe access

It’s important to provide access to sterile syringes How can a young adult IDU prevent getting HCV? Stop injecting, don’t share and use sterile drug injection equipment. When we educate young adults and give those messages, we also need to give them the tools they need to stay safe. Providing sterile syringes gives them one critical tool.

What if we can’t provide syringes?

If your program can’t provide equipment, then you simply must partner with an SEP or other organization that can. Other agencies to look to for access to sterile syringes are:

** ** ** ** ** **

SEPs Underground SEPs HIV/STD programs Hepatitis programs Homeless organizations Health clinics

* * * * *

Local hospitals VA hospitals Health departments Drug treatment centers Pharmacies

It’s important to provide drug preparation equipment One research study found that 37% of HCV infections among young IDU in the US are due to sharing drug preparation equipment, not just syringes. Your program can offer:

** ** ** ** ** **

Cookers Twist ties Cottons Water Ties (tourniquets) Alcohol pads

Don’t forget about pharmacies Pharmacies can be excellent sources for sterile syringes: they are located in most neighborhoods, are open extended hours, have trained professionals who can offer health care advice, and some also take used syringes for safe disposal.

“It’s cool that UFO has sharps container if you want to turn in your dirties here. And they’ve got supplies like needles and stuff, which brings people too. I don’t know of another exchange that’s open at this time, you know. Some people come in for just that.” –UFO participant

It’s important to provide overdose prevention

Overdose is the number one cause of death among young adult IDU. Overdoses can be prevented, and in regions where Naloxone is available, overdose deaths have decreased. www.ufomodel.org

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Implementing UFO: Counseling and testing for HCV

4E


4E Implementing UFO: Counseling & testing for HCV Counseling and testing for HCV

Overview

HCV infection and HCV testing can be complex and difficult to understand. There are multiple tests for HCV that diagnose different stages of infection. It is important that counselors have a good understanding of HCV testing, and can clearly explain it to the participant. Testing should be done with appropriate counseling so that the participant will be well prepared to receive the results, including the ability to cope with the diagnosis a chronic disease. HCV testing is a process that should incorporate risk reduction assessment with participantcentered counseling and education.

About 3.2 - 4 million Americans are estimated to be infected with HCV. Young IDU are at high risk for HCV due to frequent injecting and sharing needle/ syringe and other drug preparation equipment. HCV infection can range of in severity from a mild illness lasting a few weeks to a serious, lifelong illness that damages the liver.

There is a training for counselors in the Appendix. This section is divided into 5 sections: **

Overview

**

Phlebotomy

** ** **

Pre-test counseling

Post-test counseling Rapid testing

Overview of HCV

What happens when someone get infected with HCV?

When someone becomes infected with HCV, they will develop antibodies anywhere from 1 week to 6 months after initial infection. These first six months are referred to as the “window period” of infection. The majority of people infected with HCV do not experience symptoms related to their infection. Physical symptoms alone cannot determine whether or not a person is infected. Because of this, testing is the only way to confirm HCV infection.

How can a person know if they have been infected with HCV? The only accurate determination of infection is through testing for the virus. It is important to take a thorough and reliable history of risk, to understand the likelihood that someone is infected, when they might have become infected and whether or not a person is in the window period for HCV infection. Although HCV is generally asymptomatic, it is extremely important for a person to know whether or not they are infected with HCV. HCV is extremely easily transmitted from one individual to another.

What is acute infection?

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The first period after HCV infection is referred to as the “acute” period. Acute HCV infection generally lasts about 6 months after someone is infected with the virus. Establishing the time period of infection for HCV can be important because HCV acts differently during the acute period. About 25% of people

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4E Implementing UFO: Counseling & testing for HCV who become infected with HCV will spontaneously clear the virus on their own in the first 6 months. Even for those who have cleared HCV, re- infection can occur. Those who do not clear or resolve their HCV infection are considered chronically infected.

Treatment for HCV during the acute period can be easier on participants and more effective than treatment of chronic HCV. Acute HCV treatment lasts 12 to 24 weeks (compared to 6-12 months for chronic HVCV) and may use fewer medications, decreasing the impact of side effects. Treatment in the acute period also has far better outcomes than treatment for chronic HCV, with success rates as high as 98%, compared to a 50-75% success rate for treating chronic HCV.

Whether or not a person with acute HCV decides to get treatment, they should follow their HCV infection closely with HCV screening every 3 to 6 months to know whether or not they develop chronic infection, or are at-risk for re-infection.

What is chronic infection?

Most people with chronic infection remain asymptomatic for 20-30 years, and some will never develop symptoms of advanced disease. However, 60-70% of people with chronic HCV ultimately will develop some degree of liver disease. People with chronic infection whose liver disease has started to progress often report increasing levels of fatigue and stomach pain. The symptoms of chronic HCV often are vague and unspecific and may go undiagnosed. This again underlines the importance of testing for anyone at risk of HCV.

Who should get tested for HCV?

Because we are working with young adult IDU who are at high risk for HCV infection, we believe that ALL our participants should be tested for HCV. In addition, the CDC recommends that persons should get tested who: **

Have ever injected illegal drugs, including those who injected only once many years ago

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**

Received clotting factor concentrates made before 1987

**

Have ever received long-term hemodialysis treatment

** ** ** ** ** **

Had blood transfusions or solid organ transplants before July 1992 Have known exposures to HCV, such as healthcare workers after needlesticks involving HCV-positive blood

Received blood or organs from a donor who later tested HCV-positive Are HIV+

Have signs or symptoms of liver disease (e.g., abnormal liver enzyme tests) Are children born to HCV-positive mothers

What are the tests?

There are two categories of HCV tests: ** **

Tests to screen and/or detect HCV

** anti-HCV Tests to diagnose a current infection and guide and monitor treatment

** TMA ** HCV RNA Again, all of our IDU participants are considered to be at risk for HCV infection. Therefore, we do not recommend performing a screening test alone, but strongly encourage this test only in conjunction with a test that diagnoses current infection status. At UFO, we usually conduct Anti-HCV and HCV RNA.

Tests to screen and/or detect HCV

Anti-HCV: This test will tell whether a person has ever been exposed to HCV by checking to see if a person has antibodies to HCV. Anti-HCV test are also referred to as enzyme immunoassays (EIAs). AntiHCV tests do not tell whether a person has hepatitis C right now. If this test is positive, we know that they have, at some point, been infected with hepatitis C. To find out whether or not the participant is infected with hepatitis C now, TMA or HCV RNA tests are needed (see below).

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4E Implementing UFO: Counseling & testing for HCV Tests to diagnose a current infection and guide and monitor treatment

Interpreting test results

HCV Transcription-Mediated Amplification [TMA]: TMA testing can detect low levels of HCV RNA in serum. Testing for HCV RNA is a reliable way of demonstrating that hepatitis C infection is present and is the most specific test for infection. This test indicates whether or not a person is infected with hepatitis C right now. While this test is helpful because it detects such low levels of virus, it is expensive and can be difficult to obtain. It detects presence of the virus, but does not measure the amount of virus in the blood. Most providers do not use this test.

Anti-HCV

Quantitative tests (HCV RNA PCR): Several methods are available for measuring not only the presence of virus in the blood, but the titer, or amount of virus in serum, which is an indirect assessment of viral load. While these tests are helpful to indicate active infection (whether a person is currently infected with HCV), it is important to remember levels of HCV RNA can vary spontaneously by 3- to 10-fold over time.

Unlike other viruses, such as HIV, the viral load does not necessarily indicate disease severity. Nevertheless, when performed carefully, quantitative assays provide important insights into the nature of HCV. Viral load does correlate with the likelihood of a response to antiviral therapy, so if a person is considering treating their HCV infection, this test is particularly helpful.

No infection or, rarely, insufficient antibody

Positive Positive

Negative

Positive

Negative

Positive or Weak or Indeterminate

Positive

Indeterminate or Positive

Negative

No infection; likely a false positive

Likely no infection, past infection, or HCV viral load low Past infection or HCV viral load low

Current infection

No infection, past infection, or HCV viral load low

Anti-HCV EAI 2 or 3

Positive

Negative

HCV RNA TMA or PCR

HCV negative

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HCV Infection

Negative

Negative

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HCV RNA

Positive

Acute or chronic infection

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4E Implementing UFO: Counseling & testing for HCV Other tests for HCV-positive persons These tests are not conducted as part of the UFO Model, but are common tests for monitoring the health and disease progression of HCV-positive participants. These tests are usually conducted with a healthcare provider who is managing the disease. It is helpful for UFO counselors to understand these tests in order to discuss with partpants.

Genotype Testing: Once a person has confirmed HCV infection, it is common to do genotype testing to identify which of the 6 subtypes of HCV the person has been infected with. HCV Genotype information is important because of the role it plays in predicting HCV medical treatment response, treatment duration and the dose of medication necessary. Genotype information can be used as a predictor of a positive treatment outcome or response.

**

** **

number, along with ALT, is one of the best indicators of the presence of liver disease. Bilirubin – two different tests of bilirubin are often used together (especially if a person has jaundice): total bilirubin measures all the bilirubin in the blood; direct bilirubin measures a form that is conjugated (combined with another compound) in the liver, another indirect measure of liver health.

Albumin – measures the main protein made by the liver and tells whether or not the liver is making an adequate amount of this protein. Total Protein - measures albumin and all other proteins in blood, including antibodies made to help fight off infections.

Liver Function Tests (LFTs): LFTs, also called a liver panel, is a blood test used to detect, evaluate, and monitor liver disease or damage. While these numbers can be good indicators of liver disease or damage, they should not be used alone, but in conjunction with other diagnostic tests. The liver panel usually consists of seven tests that are run at the same time on a blood sample. These include: **

**

**

Alanine aminotransferase (ALT) – an enzyme mainly found in the liver; the best test for detecting hepatitis. In acute infection, this is generally elevated over 3 times the upper limit of normal. However, in chronic hepatitis infection, this may be elevated anywhere from 0-20 times the upper limit of normal, though generally less than 5 times.

Alkaline phosphatase (ALP) – an enzyme related to the bile ducts; often increased when they are blocked, which can occur with fibrosis or cirrhosis.

Aspartate aminotransferase (AST) – an enzyme found in the liver and a few other places, particularly the heart and other muscles in the body. This

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4E Implementing UFO: Counseling & testing for HCV HCV pre-test counseling

Steps for HCV testing

Outline

1. Check in with participant

** ** ** ** ** ** **

Steps

General rules for pre-test counseling Important concepts to be addressed by counselor HCV knowledge assessment

Risk assessment and risk reduction counseling Advantages and disadvantages to testing Ending the session

“A lot of kids don’t understand what ‘antibodies’ means, so you have to frame it in a way that makes it real for them. For example, one person played videogames. I made the standing army the antibodies who have to attack any invading forces. So the antibodies are you, the player, and the HCV virus is the attacking force. That helped him understand.” - UFO counselor

2. Assess HCV knowledge including transmission/prevention

3. Take participant history and assess risks

4. Recommend testing and counsel participant about the testing process and results

5. Once the participant fully understands what tests are going to be drawn, what types of results they might expect and how and when they should expect to receive results, obtain the participant’s informed consent for the testing to occur. Be sure to answer all questions. 6. If available and applicable, offer HAV, HBV vaccines, Narcan. Offer materials and referrals as needed

General rules for pre-test counseling

When a participant comes to be tested, the counselor provides risk assessment and risk reduction counseling to the participant and explains HCV tests and potential results. The counselor should use counseling strategies such as active listening, reflecting, harm reductionfocused motivational interviewing, and goal setting when appropriate. The counselor should offer linkages with other service providers and provide referrals for follow-up care and case management related to HCV/HIV risk and other needs. ** ** **

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Ensure that the counseling setting is comfortable and private. Remind participant they are guaranteed confidentiality

Discuss the need for testing and screening for HCV in response to the significant prevalence of HCV among young IDU Remind participant that HCV testing is voluntary and even if participants refuse to test they can still receive risk reduction counseling and other services that may be offered, such as syringe exchange

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4E Implementing UFO: Counseling & testing for HCV ** **

Give participant opportunity to ask questions, express any concerns they might have

Be sure to answer all questions and provide materials, referrals or followup for any questions you cannot answer

Important concepts to be addressed by counselor

The following concepts can be complicated both for the counselor to learn, and the participant to understand. We’ve tried to include stories and examples from our own counselors to help simplify them. Folks may need to go over these concepts several times to really learn them. Attending any trainings (online or in person) on HCV and talking to other test counselors can be helpful.

Antibodies vs virus

It is important to distinguish between antibodies and actual virus for a participant in the testing context. Antibodies are explained as the body’s response to exposure to and possible infection with a virus, and that they are often much easier to test for and detect than actual virus. Antibody tests are the first step in a two-tiered process— participants will receive a second set of results that not only confirm the initial antibody result, but will also address whether or not actual virus is present. Be careful to explain that if a positive antibody result is received, further testing will be needed (and in most cases provided) in order to determine whether the participant is currently infected. The underlying message will be that antibody results do not actually indicate whether or not an individual is infected with a virus, but help to inform about exposure and possible, or past, infection.

Window period

Counselors should address the window period during both the pre-test and disclosure counseling session. They may utilize a written time line or other calendar-like depiction of time since last risk in order to tailor this discussion to their particular participant’s needs. www.ufomodel.org

Emphasize that if a participant has experienced risk in the past 3 months, that the result they receive may or may not include that time period indicated, and “I say, ‘do you know the that it may take their body up to 6 months difference between antibodies to begin to produce antibodies as a result and virus?’ sometimes of infection. Because UFO offers a TMA they’ll just say yes because test as a follow up to the antibody testing they think they want to give provided, participants will be informed me a right answer. That’s that while they may receive a negative something you always want antibody result, it is still possible that they to be aware of when you’re have been infected, and that their TMA counseling. I draw pictures result may come back positive, indicating and talk about dragons a newly developing infection. Generally, and castles and soldiers, virus begins to be present at detectable little visual things help them levels between 2-4 weeks after infection, remember. but it may take longer for some individuals depending on other complicating factors. Their body is the castle. I a draw a circle for the castle, Re-infection and then I draw a picture of a dragon flying towards the Address the risks of re-infection castle, and I say the dragon during both the pre-test and disclosure is the virus, HCV. Then I draw counseling session. While some people a bunch of little dots inside who have been exposed to HCV will the castle--those are the spontaneously clear the virus, they are at risk for re-infection as long as they engage soldiers produced to fight the dragon – the soldiers are the in risk-taking activities. While research antibodies. The soldiers will has shown that there might be some possibility of increased protection against never go away. Most tests test to see if the soldiers are there HCV once a antibodies have developed, in your body. it is important that the participant understand that they can be infected with Until recently we thought that HCV multiple times, and that clearing dragon (HCV) was always the virus once does not necessarily mean there once it came--it’s a that will clear it the next time. Complete very tenacious disease. And cessation of all activities that put a person it sleeps in the castle until the at risk of contracting HCV is the only way symptoms show up 20-30 to provide complete protection. years down the line. But once Acute infection in a while the soldiers are strong enough to kick that The first period after HCV infection is dragon out. So that’s why we referred to as the “acute” period. Acute test for both the antibodies, HCV infection generally lasts about 6 which show up 2 weeks to 6 months after someone is infected with months after you’re exposed the virus. Establishing the time period to the dragon, the virus. And of infection for HCV can be important we have tests for the dragon, because HCV acts differently during to see if it is actually roaming the acute period. About 25% of people around in the castle walls or who become infected with HCV will not. It might not be there.” spontaneously clear the virus on their own - UFO counselor in the first 6 months. Even for those who have cleared HCV, re- infection can occur. Those who do not clear or resolve their HCV infection are considered chronically infected. UFO Model Replication Manual

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4E Implementing UFO: Counseling & testing for HCV Chronic infection Most people with chronic infection remain asymptomatic for 20-30 years, and some will never develop symptoms of advanced disease. However, 80% of people with chronic HCV ultimately will develop some degree of liver disease.

Clearance

When appropriate, counselors may discuss rates of viral clearance following acute infection, which range from 10% to 50% in the two years following an acute infection. Staff will emphasize that uncertainty remains regarding the rate, time course, and predictors of viral clearance, but that predictors of clearance in some studies have included gender, ethnicity, symptomatic presentation, absence of HIV infection, and the strength and pattern of HCV-specific immune responses.

Treatment

Treatment for HCV is complicated, but participants should know that treatment is available and we can help you with that should you need it.

HCV knowledge assessment ** **

Ask the participant what he knows about HCV. Answer any questions.

Briefly discuss the natural history of HCV. See the Overview section for more details. **

** **

Explain symptoms. The majority of people infected with HCV do not experience symptoms related to their infection, but many of these people can still transmit the HCV virus. Explain risk for young IDU, prevalence in your community Discuss how HCV is transmitted ** **

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Blood-to-blood contact (injecting, tattooing, transfusions, etc). Injecting drug use is the most common mode of transmission, through sharing syringes or drug preparation equipment (cookers, etc).

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Sexual transmission is not common but it does occur. Rough sex, fisting, sex with multiple partners and having an STD or HIV appear to increase a person’s risk of HCV. This is likely due to blood contact during sex.

Risk assessment and risk reduction counseling **

** ** **

Identify and discuss behaviors and history that may pose risk for HCV. See detailed Risk Assessment guidance in this chapter’s Appendix. Document any risk factors for HCV. Discuss ways to prevent transmission of the HCV virus to self or others based on risk factors identified during the risk assessment Work with participant to develop a risk-reduction plan

Based on risk factors identified, encourage the participant to undergo testing and screening for other conditions such as hepatitis B, HIV and STDs and provide possible referrals for testing and screening

Advantages and disadvantages to testing

Discuss the advantages and disadvantages for the participant of knowing his/her HCV status. If she does not decide to test, provide written materials on HCV and testing, and document decision and pertinent risk factors discussed.

Advantages **

** **

If you know you have HCV, you can take care of your liver by avoiding things that harm it, (like alcohol) and by doing things that help it, (like eating well, getting lots of rest, relieving stress and getting vaccinated for hepatitis A and B) If you’re HCV negative, discovering you’re not infected can be a big relief

You can’t get treated if you don’t know you’re infected. For some, HCV can be life threatening. HCV can be treated, and it is possible to eliminate the virus. The sooner you get tested,

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**

the sooner you can start exploring whether treatment is an option for you.

Symptoms can’t tell you whether or not you have HCV. Many people with HCV don’t feel sick, may not have any symptoms, but can still have significant liver damage. Similarly symptoms that may be perceived as other viral infections may be symptoms of acute or advanced HCV, such as low grade fever, fatigue, appetite loss, abdominal pain or nausea and vomiting.

Disadvantages ** **

**

You may experience anxiety related to being tested for HCV, regardless of the test outcome There is neither a vaccine nor a predictable cure for HCV. There are treatments for HCV. However, being tested and found positive will not ensure that treatment will work for you.

A positive HCV result can add more stress to your life, and may have a negative impact on your emotional/ mental health

Preparing for testing

If the participant agrees to be tested, describe the two test that will be drawn, Anti-HCV and HCV RNA. Discuss testing methods and procedures **

**

**

Remind participant that HCV testing is voluntary and even if participants refuse to test they can still use the other services provided by your program

Explain blood draw procedure. Emphasize that your phelobotomists have vast experience working with IDU and will be able to draw blood without causing pain.

Explain conditions of confidentiality (is testing anonymous, will results be sent to the Health department, etc)

Participants will receive one of the following test results: negative, positive or indeterminate. Explain that possible retesting may be needed depending on the result outcome and risk factors. Anti-HCV

HCV RNA

HCV Infection

Positive

Negative

Positive or Weak or Indeterminate

Positive

Likely no infection, past infection, or HCV viral load low

Negative

Indeterminate or Positive

Negative

No infection or, rarely, insufficient antibody

Current infection

Negative

No infection, past infection, or HCV viral load low

Ending the session **

**

** **

Once the participant fully understands the testing procedure and what the tests mean, obtain the participant’s consent for the testing to occur. Be sure to answer all questions. Schedule a return date to receive test results. Ideally, the same pre-test counselor should deliver post-test results disclosure. Make sure you have adequate contact/tracking information.

Provide any written information to support the risk-reduction counseling. Provide any referrals as necessary. Encourage the participant to contact your program if they have any questions or concerns while they are waiting for their results.

Possible results

Prepare participant for possible test result outcomes and post-test counseling. www.ufomodel.org

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4E Implementing UFO: Counseling & testing for HCV Post-test counseling Outline **

Steps

**

Disclosure of a negative test result

** ** ** ** ** ** **

Pre-site meeting

General rules for disclosure

Steps 1. If possible, discuss test results with other counselors before participants arrive (before drop-in in the UFO Model)

2. Check in with participant. Ask if they have any questions.

Disclosure of a positive test result

3. Match ID#, date of birth or any other identification to make sure the test results are for that participant

Case studies and general indications for disclosures

5. For positive results, provide referrals, set up appointment for follow-up

Key counseling messages related to specific positive test results

Disclosure of other related test results Ending the session

4. Disclose results. Answer any questions.

6. Remind participant of window period, self care, partner care 7. If available and applicable, offer HAV, HBV vaccines, Narcan. Offer materials and referrals as needed. 8. Set appointment for follow-up testing as needed

Pre-site meeting

Before participants arrive for results, it’s a good idea to give your counselors time to look over the test results and prepare for any positive results. In San Francisco, we schedule a 1-hour pre-site meeting with counselors and program staff to discuss all test results that will be given that day, and go over any prominent risks or issues for each participant. During this time, counselors can discuss any questions they may have and get support and advice from their peers. See Part 4C – Drop-in center for more details.

General rules for disclosure

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When a participant returns for his or her results, the counselor provides disclosure counseling to the participant, which includes interpretation of results and related information with emphasis on possible impact on current behavior and partnerships, and future/confirmatory testing options as well as providing referrals. The counselor should use counseling strategies such as active listening, reflecting, harm reductionfocused motivational interviewing, and goal setting when appropriate. The

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4E Implementing UFO: Counseling & testing for HCV counselor will also offer linkages with other service providers and provide referrals, for follow-up care and case management related to HCV/HIV, risk and other needs. ** ** ** **

Ensure that the disclosure setting is comfortable and private. Remind the participant they are guaranteed confidentiality.

One person can be infected with HCV multiple times. Further, some people may spontaneously clear HCV once, then develop chronic infection with reinfection.

For all ‘negative’ test results: **

Review pre-test counseling session. Give participant opportunity to ask questions, express any concerns they might have.

**

Explain the test result clearly using terms the participant will understand. Take the time to answer all questions and ensure the participant correctly understands the result.

**

Ensure that the participant is prepared to receive their result. Get verbal permission to disclose the test result to the participant.

Disclosure of a negative test result

Negative Anti-HCV: In the case of antibody testing, a ‘negative’ test result suggests that a person has not been exposed to HCV. Depending on their reported risk, and potential exposure history, discuss the accuracy of this result and help the participant determine if subsequent antibody testing is necessary. Negative or Undetectable Viral Load: In the case of qualitative viral load testing, a ‘negative’ result may come back as ‘negative’. For quantitative viral load testing, the result may come back as ‘<50 copies/ml’ or another such number, depending on the sensitivity of the test used. This suggests that the participant does not currently have HCV in their blood. This test can be negative even when the antibody test is positive.

If the antibody test is positive, but the viral load test is negative, this indicates that the participant had been infected with HCV in the past, but has since cleared the virus. Ensure that the participant understands that they are not currently infected with HCV, but that they may be at risk for reinfection. Prior exposure to HCV does not grant natural immunity to an individual. www.ufomodel.org

**

Discuss the window period and, based on participant risk, the need for subsequent testing Make an appointment for a subsequent post-test counseling visit if the participant is at high behavioral risk for HCV

Reinforce the prevention plan. Review risk-reduction strategies and help participant make reasonable goals to decrease HCV risk in the future Assist participant in obtaining clean syringes, cookers, tourniquets or any other equipment that can help them remain HCV-free

Disclosure of a positive test result ** ** ** **

**

**

Ensure that the disclosure setting is comfortable and private. Remind the participant they are guaranteed confidentiality.

Review pre-test counseling session. Give participant opportunity to ask questions, express any concerns they might have.

Ensure that the participant is prepared to receive their result. Get verbal permission to disclose the test result to the participant. Explain the test result, using clear, explicit language to convey the probability that the participant is infected with HCV, e.g., infection is “possible”, “likely”, or “probable”

Reinforce the necessity for confirmatory testing if anti-HCV test only test performed. Ensure that the participant fully understands that this test only indicates that the person was exposed to HCV historically. This does not indicate present infection. Provide the participant with support for dealing with the test result, including the development of a plan for coping with the stress of waiting

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4E Implementing UFO: Counseling & testing for HCV

**

**

for the confirmatory test result. Provide crisis intervention and referrals as indicated.

Advise the participant to adopt the behaviors discussed in the prevention plan (to act as if he/she is HCVinfected) until the test has been confirmed Make an appointment for the participant’s return to receive the confirmatory test result

Key counseling messages related to specific positive test results Anti-HCV Positive: A positive anti-HCV test result indicates that at some point in time, a participant was exposed to and infected with HCV. Their body generated specific antibodies to fight the infection. About 20% of people who are infected with HCV spontaneously clear the virus with no intervention (medical treatment). This test simply tells us that exposure has occurred. It does not indicate present, active infection, nor does it indicate when a person was infected with HCV.

PCR >50copies/mL: The presence of a number of copies of HCV virons greater than 50 indicates the current presence of the HCV virus in the participant’s serum. This test indicates that the participant is currently infected with HCV. Unlike other viral infections, such as HIV, a high viral load does not indicate severity of infection, nor does it suggest a timeline related to infection contraction. A persistently low viral load, however, does suggest good treatment outcomes, should the participant decide to get treatment for their HCV infection.

TMA Reactive: A reactive TMA test indicates the presence of HCV virus in the body, though does not indicate the number of virons per ml of blood. This test indicates that the participant is currently infected with HCV. It does not indicate the temporality of infection (when the person was infected) nor does it indicate the severity of infection. 100

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For all ‘positive’ test results: ** ** ** ** ** ** **

**

Discuss the possible need for subsequent testing, including LFTs, confirmatory testing or genotyping.

Discuss the importance of liver health and possible ways to reduce the impact of drugs, alcohol, nicotine and other toxins on the liver. Ask if any of the risk reduction options are do-able and realistic for the participant.

Thoroughly answer any questions that participant has and direct them to resources for further information. Make an appointment for a subsequent post-test counseling visit if the participant is at high behavioral risk for HCV transmission to others.

Reinforce the prevention plan. Review risk-reduction strategies and help participant make reasonable goals to decrease HCV risk to others. Assist participant in obtaining clean syringes, cookers, tourniquets or any other equipment that can help prevent them from transmitting HCV to others. Encourage attendance at a HCV support or information group

Case studies and general indications for disclosures

The following case studies have been drawn directly from the experience of UFO test counselors in San Francisco. If in doubt about how to interpret a result, be sure to consult with a physician or trained nurse before results disclosure. These case studies specifically refer to test interpretation. Please refer to the risk reduction protocol for associated counseling messages.

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4E Implementing UFO: Counseling & testing for HCV Case studies Participant test results

Interpretation

Counseling message

Anti-HCV: negative

HCV negative

At-risk participant should repeat test in 3 months

Anti-HCV: positive

HCV exposed

Anti-HCV: negative

HCV negative

Participant has been exposed to HCV at some point. Confirmatory testing needed to establish current HCV status. Participant should be tested for HCV RNA

Anti-HCV: negative

HCV RNA PCR or TMA: detectable

Probable acute HCV infection

Anti â&#x20AC;&#x201C;HCV: positive

HCV exposed

Anti-HCV: positive

HCV infection

HCV RNA PCR or TMA: not done HCV RNA PCR or TMA: not done HCV RNA PCR or TMA: undetectable

HCV RNA PCR or TMA: negative HCV RNA PCR or TMA: positive

Disclosure of other related test results These tests are not conducted as part of the UFO Model, but are common tests for monitoring the health and disease progression of HCV-positive participants. These tests are usually conducted with a healthcare provider who is managing the disease. It is helpful for UFO counselors to understand these tests in order to discuss with participants.

Liver Function Tests LFTs Within Normal Limit (WNL): LFTs are helpful to indicate liver disease or liver damage but are not direct tests of HCV infection. LFTs can be within normal limits even when someone is infected with HCV. LFTs can also be elevated when a person is not infected with HCV, for example, if the person has another type of viral hepatitis, or autoimmune hepatitis. www.ufomodel.org

At-risk participant should repeat test in 3 months

This testing suggests that participant has recently been exposed to HCV. Antibodies have not yet been developed but there is presence of virus. Confirmatory TMA or PCR testing should be performed. Provide info related to acute HCV infection.

Participant was exposed to HCV at some point. Evidence of spontaneous or medically-assisted clearance Participant has HCV. LFTs can help monitor lover health. PCR or TMA can monitor for spontaneous clearance. Genotyping should be done.

Moreover, LFTs are often WNL when a person has cirrhosis, so it is important to interpret this test only in conjunction with other tests, such as anti-HCV, PCR or even a liver biopsy. If a personâ&#x20AC;&#x2122;s LFTs are WNL and it is known that they do have hepatitis but do not have cirrhosis, it can be interpreted that their liver is not experiencing significant inflammation due to the presence of the hepatitis infection. If the participant does not test positive for hepatitis and their LFTs are MNL, their liver can be interpreted as healthy. If a participant has elevated LFTs but does not test positive for HCV, further tests should be performed to rule out other liver disease, including HAV and HBV.

Greater than Upper Limit of Normal: Elevated LFTs indicate that some infectious process in occurring in the liver. Elevated LFTs in the absence of other HCV testing does not indicate HCV infection. LFTs can be elevated in a variety or viral, bacterial and autoimmune processes, and should never be interpreted without further testing to rule out all forms of liver disease. LFTs may fluctuate significantly

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4E Implementing UFO: Counseling & testing for HCV over the course of a person with HCV’s lifetime. One instance of significantly elevated LFTs (> 3 times ULN) is not a cause for concern. A participant with one instance of elevated LFTs should be encouraged to return for subsequent testing and monitoring of the enzymes.

Genotyping: The genotype of HCV indicates the likelihood that someone will clear infection, whether spontaneously, in the acute period, or through medical treatment of HCV. Genotype also indicates the necessary length of medical treatment. In the US, the most common genotype of HCV is 1a or 1b, followed by 2 and 3. Studies have shown that people with type 1 HCV are less likely to clear HCV infection, either spontaneously or through treatment. Treatment for people with type 1 HCV lasts 42 weeks, as opposed to the 24 weeks indicated for types 2 and 3. Moreover, treatment efficacy for those with types 2 and 3 is significantly higher, with an estimated 80% of patients achieving SVR. For people with genotype 1, SVR is estimated in about 50-75% of people who receive treatment. Other genotypes include 4 and 5; however, these types are relatively uncommon in the US.

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Ending the session **

** **

**

Be sure the participant fully understands their test results, even if the result is ‘indeterminate’. Ask the participant to repeat their understanding of their results, and subsequent testing that is to be done, if necessary.

Give appropriate risk reduction counseling messages, help them stock up on supplies such as clean syringes, cookers and tourniquets Additionally, in the case of a HCVpositive result, be sure to discuss the impact of alcohol, acetaminophen, nicotine and other toxins on the liver and ways to mitigate their impact

Provide any related referrals to the participant and encourage attendance at an educational/support group

www.ufomodel.org


4E Implementing UFO: Counseling & testing for HCV Phlebotomy Drawing blood from young IDU can be a complicated procedure. In general, it is best to have a phlebotomist who has experience working with IDUs. As with all staff in UFO, phlebotomists should be open-minded, non-judgmental and extremely patient when working with young IDU.

Many participants say they hate getting blood drawn. That’s normal: there’s no high, and someone else is holding the needle. Because it’s often difficult, many have negative experiences getting blood drawn. It’s important to listen to these past experiences and participants’ suggestions. It can be difficult to know what area and what vein will draw blood, especially if you don’t know the participant.

Process

1. Introduce yourself

2. Tell participant you need to get some blood. They might tell you they don’t like it. Reassure them that it’s normal, and listen to their past experiences to the extent that you can. The draw should feel like a collaboration.

3. Look for the best vein for a draw. Participants may have suggestions. Your responsibility is to do the right thing. Sometimes it’s a judgment call – try what you think will work. 4. Ask permission before putting in the needle

5. Do no more than 3 sticks. Ask permission after each non-successful draw to try again.

Best practices ** ** **

Schedule extra time. These blood draws can take 3-4 times longer than regular blood draws. Have water on hand in the waiting room and encourage participants to drink Encourage participants to NOT smoke before a blood draw

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**

** ** **

Take your time looking for a vein. This may also take longer than expected. It’s better to spend time up front looking for a good spot than trying several draws.

Have a safe word. Some participants may yell and scream. Tell them they can complain and yell all they want, but you’ll only stop if they say “stop.” Be honest. If all the veins look dubious, tell the participant “I’m not 100% sure I can get blood here, but I’ll try.”

Areas for draw that often work: hands, back of the forearm (they can’t reach that area themselves), legs, back of the knee (but that’s a very tender spot), in rare cases feet

“Looking for veins on junkies is difficult, but we have an awesome phlebotomist. It’s like sometimes you go into hospitals and stuff and they can’t find a vein to save their lives, but the ones that we’ve had at UFO are really good at finding weird spots that maybe you can’t reach, so there’s still one there. So that’s really important.” -UFO participant

Case study

A young woman at UFO needed a blood draw. She was very cooperative, suggested some places. “I know there’s a good vein here, but I can’t reach it myself.” She “Where do I start looking apologized for not being in better shape. for a vein? I try to take the “Usually I try to drink a lot of water when I most ethical and professional get here, it makes it easier.” approach. They give their opinions based on their The phlebotomist carefully ran finger up lived experience, and I give and down both arms and hands, looking mine based on my medical for a spot. The first try was in the forearm, experience. which didn’t work. The phlebotomist apologized, put on cotton and tape, asked if she could try again.

The phlebotomist decided to try the back of the leg and asked permission. “Here’s a good spot, but it’s kind of tender. Let me know if it’s too much.” The participant was very cheerful, told her it was not a problem. This spot didn’t work either. The phlebotomist put on cotton and tape, asked if she could try one more spot. Together they decided that a vein in her hand would be the best bet.

People often have strong opinions about what they want. Sometimes it’s better to go with that. Where do you draw the line? I won’t do the neck. Someone wanted a wrist draw once and I told him I don’t feel comfortable with that.” - UFO phlebotomist

The third try worked, and they got blood for the tests. After the draw, the phlebotomist put on tape and cotton, and both participant and phlebotomist apologized for the difficult draw.

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4E Implementing UFO: Counseling & testing for HCV Testing using an HCV rapid test **

Steps

**

Rapid test procedures

The HCV rapid test was approved by the FDA in 2011 for use with persons at risk for HCV infection. Before implementing rapid HCV testing, check with your local or state health department for HCV rapid test qualifications and training required for your agency, as requirements differ state by state. In order to perform the rapid test, your agency will likely have to complete some or all of the following:

Resources

**

** ** ** **

How rapid test differs from standard test Reading test results Best practices

**

CLIA/CLEP waiver

**

Registration with local health department

**

** **

Quality Assurance (QA) plan

Counselors or phlebotomists training in rapid testing protocols Linkages to care for participants who are HCV-infected OSHA compliance

Remember that the OraQuick test only shows HCV antibodies. A positive test result does not mean that a participant has current HCV infection. A second HCV RNA test is needed to confirm if the participant has active HCV. Please see the previous sections in this chapter for details on pre- and post-test counseling. This section will focus on the process of rapid testing.

Steps for HCV rapid testing

1. The counselor conducts a risk assessment to determine if the participant should get an HCV test. Because most UFO participants are at high risk for HCV, we recommend testing all young adults who are active injectors in your program.

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It is common for young adult IDU to assume they are HCV-infected because they believe all their friends are, or because theyâ&#x20AC;&#x2122;ve shared equipment. If a participant tells you they tested positive for HCV and received confirmatory tests, they do not need another test. Make sure they have current access to medical care and treatment if desired. If participants believe they have HCV but tell you they donâ&#x20AC;&#x2122;t remember when they tested, or which test they received, go ahead and conduct another test. www.ufomodel.org


4E Implementing UFO: Counseling & testing for HCV About 15-30% of young adults spontaneously clear their HCV infection. If a participant tells you they have tested positive for HCV, you might suggest they access their healthcare provider to conduct another RNA test to see if they are still HCV-infected, or have cleared their infection. 2. The counselor explains the test and verifies that the participant is ready to receive test results in 20-40 minutes. Then, the counselor gets consent from the participants. Check with your health department to see if written consent is needed. 3. The participant gets a fingerprick test. This could be done by the counselor (if they are certified to conduct HCV rapid tests) or by a phlebotomist or healthcare worker.

4. The counselor conducts risk reduction counseling during the 20 minutes required for the fingerprick test. 5. The counselor reads the results of the test or gets the results from the phlebotomist, verifies identifying information with the participant, and asks s/he is they are ready to receive their test results. If yes, the counselor discloses results to the participant. 6. The counselor gives the participant referrals or schedules follow-up appointments, if necessary.

need to complete a blood draw and HCV RNA testing to see if they are currently infected with HCV.

Disadvantages to the rapid test are that the participant might not be ready to receive results immediately, and that some young adult injectors may have an aversion to the fingerprick. Another perceived disadvantage is that it might disrupt the counselor’s routine and processes at the agency. At UFO in San Francisco, some of our counselors were worried about precisely that, but once we started, realized that the routine and processes were not that different. Also, most young adults actually preferred the rapid test.

Rapid testing procedure

If you do not have access to a lab or clinical setting, it can be helpful to prepare kits for each test ahead of time. Being prepared makes it easier for the counselor and puts the participant at ease. Kits should contain the following items.. In addition, the counselor or blood lab has a watch or clock or timer and a thermometer in the room to record the time and temperature. ** ** **

How rapid test differs from standard blood draw test

**

The basic difference between rapid testing and standard testing, is that participants do not have to wait a week to find out the results of their test. Rapid testing can be helpful for the participant, who can find out immediately and doesn’t have to remember to come in a week later for results. It can be helpful for outreach workers, who don’t have to try to find and remind the participants to come back in for results. And it can be helpful in increasing the number of young adults who are tested and know their HCV status. However, the rapid test only shows the presence of antibodies, so if a participant tests positive with the rapid test, they

**

www.ufomodel.org

** ** **

OraSure fingerprick test kit – wand for blood, stand for tester and tester Lancets to poke the finger

Chucks – pads that are precut into small squares to put under the participant’s hand Alcohol wipes

Gauze and bandaids Gloves

Sharps container

Paperwork that needs to be filled out for the test

Below are the steps for conducting a rapid HCV test using OraQuick. This is just a quick overview. More detail on the testing procedure can be found through the links at the end of this section. 1. Gather materials

2. Verify conditions for testing and examine test kit pouch (sufficient lighting, unopened test kit, room temperature, and absorbent pack) 3. Record lot number

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4E Implementing UFO: Counseling & testing for HCV 4. Record expiration date 5. Record initials

6. Open pouch, remove vial

7. Affix client number to vial (if applicable)

8. Affix client number to risk assessment form, testing log, etc. (if applicable) 9. Open vial and put in stand 10. Put on gloves

11. Collect finger-stick blood sample 12. Visually examine loop

13. Stir in sample, discard loop in biohazard container 14. Examine vial – fluid pink?

15. Insert test kit and face towards wall 16. Record start time and temperature 17. Record stop time temperature 18. Read and record results

Reading the rapid test

There are three possible outcomes: the test is reactive, non-reactive or invalid. The testing device is labeled with a C and a T by the results window. **

**

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If a line appears ONLY in the C zone, completely across the window, this is a non-reactive result. A non-reactive test indicates no presence of antibodies to HCV infection at that time. Counselor should explain the window period again and determine if another test is indicated once window is closed. If a line appears BOTH across the C and T zones, this is a reactive result. The participant has HCV antibodies, showing that s/he has been exposed to HCV in the past. A reactive result DOES NOT mean that the participant

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has active HCV infection. This participant should get an HCV RNA test to confirm HCV infection.

If no lines appear, or only partial lines, or the background is pink, this is an invalid result. The test should be repeated again from the start with a new test kit.

Best practices

Here are some of the things we’ve learned at UFO that make the rapid hep C testing process a little easier. **

** **

Be prepared. Have everything you need to conduct the test ready before the participant arrives (like the kits described above). That puts them at ease and increases confidence. Move their arm. We ask the participant to circle her/his arm in the air a few times. That helps the blood flow to the finger.

Use the side of the finger. Ask participants if you can look at their hands. Fingertips have more nerves (which means more pain) and are often calloused and not good for fingerpricks. Ask them if they have a certain finger that they prefer you use.

Helpful resources for rapid HCV test **

California state guidelines: www.cdph.

**

New York state guidelines: www.health.

**

OraSure step-by-step instructions:

ca.gov/programs/aids/Pages/HCVTestingNonHealthcare.aspx

ny.gov/diseases/communicable/hepatitis/ hepatitis_c/rapid_antibody_testing/ www.orasure.com/docs/pdfs/products/ hcv/us/OraQuick_HCV_Step_by_Step. pdf

www.ufomodel.org


4E Appendix 1 Risk reduction plan Risk reduction plans

Adapted from the Harm Reduction Coalition

Injection Drug Use Key Messages **

Injection drug use puts you at the highest risk of getting HCV

**

Blood can be present on any injecting equipment, even though it may not be visible, (syringe, cooker, cotton, hands, in used water, etc).

** ** **

HCV is more easily transmitted via blood than HIV.

HCV can be present in very small amounts of blood. Bleach cannot effectively kill HCV

Questions

**

Do you inject drugs alone or with others?

**

How do you prepare your shots, do you divide your drugs?

** ** ** ** **

How do you set up to inject with others?

Are there any of your works or area that could have contact with blood?

What sorts of things could you do to avoid contact with others peopleâ&#x20AC;&#x2122;s blood? How/where do you store your dirties? Your cleans?

Where do you get syringes and other injecting equipment? How often do you access that place?

Strategies

**

** **

** ** **

Discuss safe injecting practices:

** Prepare your own drugs and inject yourself whenever possible ** Mark your own injection equipment ** Clean the surface areas you use to prepare drugs before and after use. ** â&#x2C6;&#x2019; Ensure proper disposal of used equipment Encourage adequate supply of new syringes and other injecting supplies: ** Availability of, access to Syringe Exchange Programs ** Purchase from pharmacies ** Prescribed by doctor Reduce injecting drug use:

** Take drugs in other ways, e.g. swallowing, smoking and snorting are safer ** Substitute therapies, e.g. methadone, buprenorphine ** Abstinence, detox, rehab options ** Substance use counseling Discuss the current social & personal supports the participant has or can access. Explore how this support can be used to help them to reduce or stop alcohol use.

Assess and discuss underlying issues that may lead to drinking e.g. mental illness or depression. Refer to appropriate service. ** Use a worksheet for keeping track of cutting down: Set a goal ** **

Write down the pros and cons of using Celebrate incremental steps in change

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4E Appendix 1 Risk reduction plan Sexual Transmission Key Messages ** ** ** ** ** ** **

Hepatitis C is primarily found in blood. Sexual transmission is not common, but can occur; especially when blood is present during sex. Risk is heightened with multiple sexual partners. Risk is probably higher with certain sex activities that involve blood, like unprotected vaginal or anal sex. Oral sex is low risk, but not zero risk. Risk is probably higher if STDs are present or one or both partners are HIV+ or skin tears present and when a woman is menstruating or pregnant. If in long-term monogamous sexual relationship, the risk of transmission is very low. You may not need to change behavior but may wish to discuss the use of barrier precautions.

Questions **

Do you know whether your partner has hepatitis C or HIV?

**

Can you think of times when blood may have been present when having sex?

** ** ** **

Who do you have sex with?

What kind of sex do you have?

What sort of things could you do to prevent blood-to-blood contact when having sex?

If you are concerned about sexual transmission, are there reasons why you donâ&#x20AC;&#x2122;t use condoms?

Strategies

**

Sexual transmission is uncommon. If there is concern of hepatitis C Transmission then use condoms to reduce your risk.

**

Explore reasons why condoms may not be used when risk factors are known and present.

**

** ** **

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Avoid high-risk practices, modify how the practices is performed, e.g. use plenty of lubrication when having anal or rough vaginal sex, use condoms in pregnancy and menstruation. Have STDs treated. People with HIV may choose ARVs to lower their viral load and strengthen their immune system Discuss access to and adequate supply of condoms and water-based lubrication.

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4E Appendix 1 Risk reduction plan Household Contact Key Messages ** **

Only household items contaminated with blood can transmit Hepatitis C, e.g. razors, toothbrushes, nail clippers, snorting straws. Reinforce hepatitis C cannot be spread by: ** ** ** ** **

Coughing or sneezing (casual contact) Hugging & kissing Food or beverages Sharing eating utensils or cups Breast feeding (unless nipples are cracked or bleeding)

Questions **

**

Are there items in your house that you think may have contact with blood that others might use? What sort of things could you do to avoid blood-to-blood contact from your own personal items?

Strategies

** ** **

Have your own toothbrush and razor clearly identified.

If blood is present in your mouth have dental problems attended to if possible.

Encourage participant to discuss HCV transmission with other members of household.

Tattooing/Body Piercing Key Messages ** **

Only sterile or new equipment should be used.

Inkpots should be for single use only and should not be shared by others.

Questions

** **

Have you ever had tattooing or piercing done where you could have had contact with other peopleâ&#x20AC;&#x2122;s blood?

If you are having a tattoo or piercing done when sterile equipment was not available, how could you ensure your own needle and ink supply?

Strategies

**

Only have tattooing or piercing done if sterile equipment and new single-use inkpots are used.

**

Ensure own/marked equipment is used for tattooing or piercing.

** **

If non-professional/unsafe tattooing or piercing occurs, dispose of implements once used. Ensure own inkpot is available

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4E Appendix 1 Risk reduction plan Alcohol Key Messages ** ** **

Alcohol is a potent toxin to the liver.

If you have hepatitis C and drink alcohol the risk of liver damage is increased.

If alcohol consumption is moderate to high and the participant has HCV, then strategies to reduce consumption should be discussed. It is unclear if low levels of alcohol consumption are harmful.

Questions ** ** **

Are there ways that alcohol causes problems in your life, e.g. relationship, financial, health? How do you think you could reduce or stop drinking alcohol? Where are you in terms of reducing your drinking?

Strategies

**

** ** ** ** ** ** ** ** ** ** ** ** ** ** ** **

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Refer to appropriate substance use counseling:

** Substance Use Counselor ** Alcoholics Anonymous (AA) ** Detox/rehab ** Substitute Therapies, e.g. naltrexone, medical management Discuss the current social & personal supports the participant has or can access. Explore how this support can be used to help them to reduce or stop alcohol use.

Assess and discuss underlying issues that may lead to drinking e.g. mental illness or depression. Refer to appropriate service. Avoid drinking alone.

Alternate usual drinks with alcohol-free or low alcohol drinks. Drink water while drinking alcohol.

Break the habit of drinking in rounds.

Have at least two alcohol free days a week and consider increasing the number of alcohol free days each week. (note: 1-2 drinks a day is less harmful for the liver then 5 drinks in 3 hours) Do not drink when you have had a bad day. Drink slowly.

Substitutes drinking with other activities you enjoy doing. Avoid situations where there is pressure to drink.

Get support for yourself and your family/significant others. Identify the times of day you are prone to drinking alcohol.

Examine the situations that trigger unhealthy drinking patterns and develop new ways of handling these situations. Save the money in a separate place that you would spend on alcohol. Use a worksheet for keeping track of cutting down: ** ** ** **

Set an alcohol limit and write it down Set a goal Write down the pros and cons of drinking Celebrate incremental steps in change

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4E Appendix 2 Risk reduction training for counselors Training for UFO counselors on pre- and post-test risk reduction counseling Outline 1. Welcome

2. Brainstorm: What do you wanna know? 3. ”I never” game and debrief 4. Pre-test counseling 10 minute breakie

5. Post-test counseling

6. Negative and Positive game (role plays)

7. Refer to brainstorm and answer all questions

Overview

This 2 hour training is for UFO counselors who see clients before and after testing for HCV. Training is usually for 2-4 counselors at a time. This is not a training on HCV prevention or transmission, it is to aid in counseling.

It’s super important for young adult IDU to get correct information and to have the space to have an honest, supportive, safe conversation about their lives and their risk before getting tested.

Personnel needed

Training should be run by at least two experienced counselors. One should lead the training and other(s) should be available for role plays and answering questions.

Materials needed **

Cans of soda (enough for everyone in the training)

**

Flip chart or dry erase board/chalkboard

** ** **

“I never” statements (enough for everyone in the training) Risk assessment scenarios Markers or chalk

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4E Appendix 2 Risk reduction training for counselors 1) Welcome Welcome to the risk reduction counseling training! To begin, find out what people know and have experienced around testing and counseling. Question for participants

Have you ever been an HIV/HCV test counselor? If yes, where?

Have you ever been tested for HIV/HCV? If yes, was it a good experience - please explain. Elicit answers from the group–make sure everyone answers.

2) Brainstorm - What do you wanna know?

Write a list on flip chart or board of all of the questions people have about this topic and anything they want to learn/get out of this training. We’ll refer to it at end of class to make sure all questions are addressed.

3) “I never” game

1. Hand out one can of soda and one “I never” statement to each participant. A print out of the statements is included at the end of this training. 2. One at a time, have a participant read the statement on their paper.

3. After the statement is read, tell participants: IF YOU HAVE DONE WHAT THE STATEMENT SAYS, TAKE A SIP OF YOUR DRINK! 4. Go through the room until everyone has read their statement.

Statements

1. I never had a bad experience with a doctor, teacher, cop, or boss. 2. I never avoided getting a test because I was scared.

3. I never lied about how much I drink or smoke cigarettes, or other drugs. 4. I never ride my bike without a helmet. 5.

I’ve never put someone I love at risk for anything.

6. I never assumed something about someone and was totally wrong. 7. I never lied about my sexuality.

8. I never was too embarrassed to buy something I really needed.

9. I’ve never continued to do something to myself even though I knew it was bad for me. 10. I never feel scared about doing something totally new, like being a pre and post test counselor at UFO.

Debrief

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The objective of this game is to bring home the fact that we all put ourselves at risk at some time or another in life – it’s part of being human. Getting tested for HCV/HIV is sometimes scary and our participants may avoid it for a variety of reasons we can all relate to. Additionally, because of bad experiences with judgmental authority figures, we sometimes lie to avoid getting judged. This is what we strive NOT TO DO. That is the essence of risk reduction – providing a safe, comfortable environment for participants so they’re real with you so you can both figure out how to reduce their risk if abstinence is not an option. UFO Model Replication Manual www.ufomodel.org


4E Appendix 2 Risk reduction training for counselors 4) Pre-test counseling Define risk reduction. Explain that all of our counseling comes from this model. Write on board

What is risk reduction?

Elicit definitions from the group and write on the board. Fill in any missing information

Goals of pre-test counseling and role plays To illustrate the goals of pre-test counseling, have participants give suggestions on how to accomplish each goal. Write the responses on the board. Then, the two trainers will role play the counselor and client for each goal. The group will have a chance to do their own role plays after the break. Goal 1. Educate and inform about HAV/HBV/HCV/HIV transmission and prevention. Goal 2. Engage in conversation about their life/risk. Goal 3. Identify window period. **

For each of the goals, demonstrate w/trainers. When the role play is finished, have group give feedback or suggest other ways to accomplish this.

After role plays, answer any of participantâ&#x20AC;&#x2122;s remaining questions. Question for participants

How did we accomplish the goals of pre-test counseling? Write down responses on the board.

Make sure these responses are included: **

By asking open-ended questions.

**

By active listening and reflection.

** ** **

By going over factual information after asking them what they know. By checking in with them.

By being non-judgmental and meeting them wherever theyâ&#x20AC;&#x2122;re at.

********10 minute break for participants******** 5) Post-test counseling Goals of post-test counseling and role play

Again, to illustrate these goals, the trainers will role play counselor and client. Goal 1. Check in with client.

Goal 2. Disclose results (-/+).

Goal 3. Restate window period. If participant is negative, tell them timeline of their window period (if they are in the window period) as well as date of follow-up test. Goal 4. Follow-up on last week.

Goal 5. Answer all questions/give all referrals.

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4E Appendix 2 Risk reduction training for counselors **

For each of the goals, demonstrate w/trainers. When the role play is finished, have group give feedback or suggest other ways to accomplish this.

After role plays, answer any of participant’s remaining questions. Question for participants

How did we accomplish the goals of post-test counseling? Write down responses on the board.

Make sure these responses are included: **

By asking open-ended questions.

**

By active listening and reflection.

** ** **

By going over factual information after asking them what they know. By checking in with them.

By being non-judgmental and meeting them wherever they’re at.

6) Negative v. positive game – participant role modeling The objective of this game is for participants to practice what they learned in a group setting. 1. Split up participants into two groups “negative” and “positive.” 2. Give each group a risk assessment scenario (included).

3. Give the group 5 minutes to collectively plan and address all the goals of the posttest counseling just reviewed. 4. Each group designates one person as the counselor.

5. Start with negative group and have the counselor role play the post-test session with the trainer. 6. Have positive group counselor role play the post-test session with the trainer. ** ** ** **

After each group does their role play, point out all of the positive ways they accomplished their goals. Use the accomplishments from above (open-ended questions, active listening, etc). Allow the group to give feedback on the role plays as well.

If any of the role plays goes wrong, where someone playing a counselor does something inappropriate or incorrect, gently point it out to the group. Allow the group to brainstorm ways to do it differently. If time allows, you might want to have a “do over” role play for that group. Be sure to answer any questions participants may have after the role modeling.

7) Brainstorm

Go back to the Brainstorm list you made at the beginning of the training. Check off all issues that were addressed and fill in any that weren’t.

Ask if there are any other questions. Remind counselors that there is a group meeting before every UFO drop-in where counselors can ask questions and go over test results before they see participants. 114

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4E Appendix 2 Risk reduction training for counselors “I never” statements Print out this sheet and cut out each sentence into a strip of paper. Fold in half and hand out to participants to read during their turn.

1. I never had a bad experience with a doctor, teacher, cop or boss. 2. I never avoided getting a test because I was scared.

3. I never lied about how much I drink or smoke cigarettes or other drugs. 4. I never ride my bike without a helmet.

5. I’ve never put someone I love at risk for anything. 6. I never assumed something about someone and was totally wrong. 7. I never lied about my sexuality.

8. I never was too embarrassed to buy something I really needed. 9. I’ve never continued to do something to myself even though I knew it was bad for me.

10. I never feel scared about doing something totally new, like being a pre and post test counselor.

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4E Appendix 2 Risk reduction training for counselors Risk assessment scenarios Negative HCV test result Adrienne. Adrienne is a quiet 22 year old white female who recently came to San Francisco and lives in a SRO with her husband, her only sex partner. She began shooting morphine one month ago when her husband began bringing it home to deal with his depression. She’s inexperienced with the needle so relies on her partner to hit her once a day. She tells you that her partner uses a new rig every time they inject together. They typically get tested for HIV and HCV together and she is certain they are both negative.

What questions would you have for Adrienne? What might be some of her risks and how might she avoid them in the future? Do Adrienne and her partner have a system in place to separate used needles from clean?

Positive HCV test result Berkeley. Berkeley is a 27 year old white male who has lived in various places around the central Bay Area for the last five years and now resides in San Francisco. He shoots heroin every day and has done so for four years. He also smokes crack to ‘level himself out’ in order to function daily. He doesn’t like his use and hates being what he calls ‘a junkie’ however an on the job accident four years ago left him with a chronic pain condition which has only worsened due to lack of medical care. Though he truly wants to work and hold a job he reports being unable to physically do “80% of the available jobs out there.” He is typically a hair’s length away from homelessness so he lives mostly out of his backpack. He is housed now. He has turned tricks to fix and feed himself. He has gone through a cycle of periodic safe then risky use. He hasn’t shared any injecting equipment in eight months but when he did it was often cottons, cookers, and rigs. He always sought to use after an injection partner who was HCV-negative however has had no way of confirming these injecting partners’ statuses. He tells you that he typically shares crack pipes with others and his lips are visibly chapped. When turning tricks he almost never uses condoms because the pay was better. This has resulted in two STIs in the last three years. He tested negative for HCV a year ago and fears the results of this next test. He has tried to kick both habits in the past but due to his pain and addiction issues, he’s typically written him off as a ‘drug seeker’. How would you engage with Berkeley regarding fears surrounding his coming results? How are his risks connected to his environment and how can they be better addressed to reach a better level of stability? What are ways he can use safer should his situation become unstable again?

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Quick ‘n’ Dirty

Counseling & testing for HCV Train your counselors HCV infection and HCV testing can be complex and difficult to understand. There are multiple tests for HCV that diagnose different stages of infection. It is important that counselors have a good understanding of HCV testing, and can clearly explain it to the participant.

Test all participants with two tests

Because we are working with young adult IDU who are at high risk for HCV infection, we believe that ALL our participants should be tested for HCV. Also, participants should receive both the HCV antibody test AND HCV RNA to determine current infection.

Use client-centered counseling

HCV testing is a process that should incorporate risk reduction assessment with participant-centered counseling and education. Testing should be done with appropriate counseling so that the participant will be well prepared to receive the results, including the ability to cope with the diagnosis a chronic disease.

“A lot of kids don’t understand what ‘antibodies’ means, so you have to frame it in a way that makes it real for them. For example, one person played videogames. I made the standing army the antibodies who have to attack any invading forces. So the antibodies are you, the player, and the HCV virus is the attacking force. That helped him understand.” - UFO counselor

Use experienced phlebotomists

Drawing blood from young IDU can be a complicated procedure. In general, it is best to have a phlebotomist who has experience working with IDUs. As with all staff in UFO, phlebotomists should be open-minded, non-judgmental and extremely patient when working with young IDU.

Consider rapid HCV testing

Rapid testing can be helpful for the participant, who can find out test results immediately and doesn’t have to remember to come in a week later for results. It can be helpful for outreach workers, who don’t have to try to find and remind the participants to come back in for results. However, the rapid test only shows the presence of antibodies, so if a participant tests positive with the rapid test, they need to complete a blood draw and HCV RNA testing to see if they are currently infected with HCV. www.ufomodel.org

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Implementing UFO: HCV education and support group

4F


4F Implementing UFO: Education & support group UFO HCV education and support group Facilitator’s Manual This Manual is for facilitators running the 4-week Education and Support Group for young adult IDUs who are at risk for, or infected with, HCV.

Outline **

Overview

**

Session 2: Keeping you and your friends healthy: How to decrease HCV transmission risk

** ** ** ** ** **

Helpful tips for running the group Session 1: Hepatitis ABCs

Session 3: Body and mind: How drugs, alcohol and HCV affect your physical and mental health Session 4: Relationships and risk

Add-on Session: HCV treatment 101 Appendix: Resources and handouts

Overview These 1-hour group sessions are designed to take place once a week for 4 consecutive weeks at a convenient time for participants. For example, in San Francisco we found the best time was right before our drop-in, so participants could stay after group for food, extra counseling or other services. These modules also may be incorporated into an existing group, such as a health group, a harm reduction group, or a youth group. There is a fifth, bonus session on HCV Treatment 101 that can be added in to groups that have participants who are HCV+, or have friends with HCV.

Ideally, the group should be offered on a regular basis, perhaps running the group 3 or 4 times per year. Participants are not required to complete all sessions, and may wish to return to certain sessions for “information boosters” The information and stories that are shared in these groups may have different meanings for a person at different times in their life. Encourage participants to come as often as possible, even if they’ve already heard the content.

Personnel needed

Groups should be run by two experienced facilitators. For some of the sessions, inviting peer educators can be helpful.

Materials needed **

A room or space free from distractions

**

Flip chart or dry erase board/ chalkboard and markers or chalk

**

Educational videos: www.ufomodel. org/video-tutorials or www.youtube.com/

** ** **

**

**

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Food or snacks for participants Money or other incentives for participants, if desired

Computer with large screen to show online videos UFOforIDU

Handouts (see Appendix)

IMPORTANT: Referrals for services (See Part 4b – Youth-centered referrals) www.ufomodel.org


4F Implementing UFO: Education & support group Helpful tips for running the group Facilitating an educational group with young adults, particularly drug-using young adults, requires a great deal of flexibility and patience. Many participants will shut down or become disruptive if they feel that the facilitator’s approach is boring or not respectful. Prepare yourself and the participants. Start by introducing yourself and ask the participants what they want to learn. Write down suggestions, then go over the list at the end of the session. Ask participants if they got the answers/ discussion they wanted. If topics come up that are covered in a later session, use it as an advertisement for the next session (“We’ll talk about that next week.”). If a participant has more questions, you can set up a counseling appointment. Also, remind participants of the topic for the next session. Be flexible. If people are not willing to talk about the topic but are willing to talk about something else, go with it. Eventually, it may be possible to use the momentum of that conversation to make connections back to the original topic.

For example, in a group in San Francisco, participants wouldn’t engage in a discussion about HCV transmission and would shut down whenever we asked directed questions about the topic. When we allowed the conversation to wander, people started talking about being in jail, and being tested for HCV in jail. As we asked more questions about that process, we found an opportunity to talk about the difference between antibody tests and viral tests, and to talk about the emotions that come up around testing. By allowing the conversation to wander, we were able to learn more about our participants’ world and the issues that are most relevant to them. Go over words and terms repeatedly. HCV is a complicated disease and it is complicated to explain. You may notice that some sections are repeated from Session to Session. When you use a term that may not be familiar to the participants, write it on the board www.ufomodel.org

and define it each and every time. For example, you may say “An immunization (vaccine) is available for HBV,” and repeat “immunization” and “vaccine” each time you mention it.

Be prepared. Facilitators should read and understand the information in each Session before the group, and watch the video. In some groups, participants will be knowledgeable about the subject matter and will want to discuss the more intricate facets of the topic. In other groups, participants will have little knowledge and the facilitator may need to spend time explaining the basics. Starting with general questions, facilitators can gauge the extent of participants’ knowledge and then fill in the blanks. Don’t be afraid to say “I don’t know.” Education groups are dynamic and people often come up with questions to which you just don’t know the right answer. Facilitators may feel pressure to have all the answers; however, it can be far more harmful to hazard an uneducated guess. Participants at a group assume that the information you are giving them is accurate. If someone comes up with a question that is novel, it’s a great exercise to demonstrate the process of finding information. If searching for the answer at that moment isn’t feasible, be sure to write down the question, and come back with the answer at the next group.

Before group ** ** **

Learn material

Communicate with co-facilitator(s) Watch Session video

During group

**

Be flexible

**

Be honest when you don’t know something

**

Allow participants to educate each other

After group

** **

Follow-up with participants who may need referrals Debrief with co-facilitator(s)

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4F Implementing UFO: Education & support group Session 1 - Hepatitis ABCs Session 1: Hepatitis ABCs Format: Video, discussion, Q&A

Teaching materials required: Computer with Internet access to play video, whiteboard, chalkboard or paper tablet and stand for writing information, handouts and brochures.

NOTE: If you have access to HCV tests and HAV and HBV vaccines, it is a good idea to make these available immediately after the session, when participants may be motivated to be tested or vaccinated.

At the end of this session, participants will be able to ** ** ** ** **

Understand the difference between hepatitis A, B and C transmission and prevention Describe the natural history of HCV infection Describe HCV testing processes

Make an informed decision to receive a vaccination, if indicated Make an informed decision to be tested for HCV, if desired

For facilitators

Before this group, you should read through this entire section, as well as any materials you’ll be handing out and watch the video.

Questions for participants and information to write on the board are presented in boxes in this manual. Answers are written after the questions. These answers do not need to be read verbatim, but are to give facts and guide what you will say. A seasoned facilitator will be able to keep the factual content and adapt the wording to fit their own style and audience.

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To begin this session, show the video “UFO Model: ABCs of hepatitis.” This video is available online at www.ufomodel.org/videotutorials or www.youtube.com/UFOforIDU.

Question for participants

What is hepatitis? How is it spread?

Elicit answers from the group–allow everyone to share what they know about hepatitis and hepatitis C. Help participants focus on the differences between the types of hepatitis and the transmission factors associated with each. Hepa = liver

-titis = inflammation

Hepatitis, then, means inflammation of the liver. There are many different types of hepatitis: A, B, C, D and E.

Hepatitis A, B and C are the most common in the Unites States so we will focus on those.

Write on board

Hepatitis A (HAV) Hepatitis B (HBV) Hepatitis C (HCV) Acute Chronic HAV – Passed by oral-fecal transmission (when shit/poop gets in your mouth), often occurring when an HAV-infected person does not wash their hands after using the bathroom. HAV is spread easily though preparation of food. All HAV infections are acute– there is no such thing as chronic HAV. The good thing about HAV infection is that it always goes away. An immunization (vaccine) is available against the virus as well. If you get immunized against HAV, you will not ever in your life get the virus, even if you come into contact with it. HBV - Passed through blood, semen and other body fluids when having sex with

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4F Implementing UFO: Education & support group Session 1 - Hepatitis ABCs or sharing needles to inject drugs with an HBV-infected person. It can also be passed from an HBV-infected mother to her newborn. HBV ranges in severity from a mild illness, lasting a few weeks (acute), to a serious long-term (chronic) illness that can lead to liver disease or liver cancer. An immunization (vaccine) is available against the virus. If you get immunized against HBV, you will not contract the virus, even if you come into contact with it. HCV- Passed through contact with the blood of an HCV-infected person, primarily through sharing needles to inject drugs. More rarely, HCV can be passed through rough sexual activities where blood may be present. HCV infection sometimes results in an acute illness, but most often becomes a chronic condition that can lead to cirrhosis (scarring) of the liver and liver cancer. There is no vaccine available to protect against HCV infection. Questions for participants

What is HAV? How is it spread? Can it be prevented?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Hepatitis A HAV is a contagious liver disease. It can range in severity from a mild illness lasting a few weeks to a severe illness lasting several months. HAV is passed by oral-fecal transmission (when shit/poop gets in your mouth),

Transmission **

**

Eating contaminated food and drinks. HAV is spread easily though preparation of food, usually often occurring when an HAV-infected person does not wash their hands after using the bathroom.

Engaging in some sex acts, such as rimming, or anything that could get poop in your mouth.

Prevention **

Washing. The easiest way to prevent

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HAV is to wash your hands with soap and water after you go to the bathroom and before you touch food.

Getting a vaccine. There is a vaccine that prevents HAV. To become immunized against HAV, you need to get 2 shots, six months apart. If you are getting the type of vaccine that is combined with HBV, you need 3 shots total.

Question for participants

What is HBV? How is it spread? Can it be prevented?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Hepatitis B HBV is a contagious liver disease. It can range in severity from a mild illness lasting a few weeks to a serious, lifelong illness. HBV is passed through contact with blood, semen and other body fluids of an HBV-infected person who you have sex with or share needles to inject drugs. It can also be passed from an HBV-infected mother to her newborn.

Transmission **

Birth with an HBV-infected mother (vertical transmission)

**

Sharing syringes or other injecting equipment with an HBV-infected person

**

** **

Sex without a condom with an HBVinfected partner Direct contact with blood or open sores of an HBV-infected person

Exposure to an HBV-infected personâ&#x20AC;&#x2122;s blood through needle sticks or other sharp instruments

Prevention **

Getting a vaccine. The easiest way to prevent HBV is to get vaccinated. To be protected and never get HBV again for the rest of your life, you need three injections: 1) the first shot, 2) the second shot one month later, 3) the

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4F Implementing UFO: Education & support group Session 1 - Hepatitis ABCs ** ** **

third shot 5 months later (6 months after the first shot).

Communicating. Learn ways to ask your sex and injecting partners about their status and be safe.

Using sterile needles and equipment if your partner is HBV-infected Using condoms correctly and consistently if your partner is HBVinfected

NOTE: If you inject drugs, silicone or anything else, we highly recommend you get vaccinated for hep A and B. Question for participants

What is HCV? How is it spread? Can it be prevented?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

symptoms at all. Persons with HCV can have no symptoms (be asymptomatic) for 20 to 30 years.

About 25% of people who are infected with HCV will clear the virus on their own in the first 6 months. About 60-70% of people infected with HCV will develop some form of liver disease. HCV can lead to cirrhosis (scarring of the liver) and liver cancer. HCV is the leading cause of liver transplants in the US and costs the medical system upwards of $10 billion. HBV is actually more virulent, meaning that it is more easily transmittable than HCV, but HCV is much more common, especially among injectors.

Transmission **

**

Hepatitis C HCV is a contagious liver disease. HCV is passed only through blood-to-blood contact with an HCV-infected person. It is mostly passed through sharing needles and injecting equipment such as cookers, water, cotton, tourniquets, alcohol wipes or anything that touches blood. If you contract HCV you might have flulike symptoms for a short while, or no

Sharing needles and injecting equipment such as cookers, water, cotton, tourniquets, alcohol wipes or anything that touches blood. This includes

** **

Needles and injecting equipment used for doing drugs ** Needles used to administer steroids and silicone ** Needles and sharp objects used in unsterile tattooing Accidental exposure to an HCVinfected person’s blood through needle sticks or other sharp instruments

Rarely, HCV can be passed through sexual activity, usually rough activities such as fisting where blood is present **

**

Among HIV+ men who have sex with men, HCV transmission is more common HCV is NOT transmitted through blood transfusions anymore, as screening of all blood products was instituted in 1993

Prevention ** **

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Communicating. Learn ways to ask your injecting partners about their status and be safe.

Always using sterile needles and equipment (syringes, cookers, water, cotton, tourniquets, alcohol wipes or anything that touches blood). USE A CLEAN EVERY TIME.

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4F Implementing UFO: Education & support group Session 1 - Hepatitis ABCs ** **

**

Knowing where your needles come from Getting tested, knowing your HCV status, and having your own sterile needles and equipment is the best way to protect yourself and your friends from HCV

Complete stopping of drug use is the only way to really reduce your risk of HCV exposure. If youâ&#x20AC;&#x2122;re not ready for that, do all that you can to be clean and safe while using.

NOTE: Bleach does NOT kill HCV

There currently is no vaccine to prevent HCV, although some are being developed. Question for participants

If there are 3 different types of hepatitis, why do we care so much about HCV in particular?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

In UFO, we talk about HCV because it disproportionately affects drug users. By disproportionate, we mean that drug users have much higher rates of HCV than the general public, and young people especially are at risk ** ** **

After only 1 year injecting, 20% of young adults with become HCVinfected

After 5 years injecting, 50% of IDUs are HCV-infected

After more than 6 years, up to 90% of IDUs are HCV-infected

Drug injectors are much more likely to be HCV-infected than they are to be HIV-infected. Gay and bisexual men and transgender women who inject drugs, silicone or hormones are likely to be coinfected with HIV and HCV.

In general, HCV is a much bigger problem in the US than HCV, although HCV receives a fraction of the funding that HIV receives. ** **

4 times more people have HCV than HIV (5 million v. 1.1 million)

10 times more undiagnosed HCV infections than HIV (3.75 million v.

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233,000)

More people die each year of HCV than HIV (15,106 v. 12,734)

Unlike HAV and HBV, there is no vaccine to protect against HCV. The only way to prevent it is through knowledge, education and care. Question for participants

What happens when someone gets infected with HCV?

Find out what the participants know about HCV. Listen carefully and let them share both their facts and misconceptions. Acknowledge which parts they share are fact or myth, then give them detailed information about HCV infection.

Write on board

Antibody - protector Virus - attacker Antibody- a substance found in the blood that the body produces in response to a virus. Antibodies protect the body from disease by attaching to the virus and attempting to destroy it.

Virusâ&#x20AC;&#x201C; a small agent that gets in the body and attacks healthy cells to spread disease. ** **

**

**

New infections are called acute. The acute period lasts approximately six months. During this time, antibodies (protectors) develop to the HCV virus.

About 15 -25% of all people who are acutely infected with HCV spontaneously clear the virus. This means that although they have antibodies to HCV in their blood, they no longer have HCV virus inside them. Most people, however, do not clear HCV on their own. This group of people go on to develop chronic HCV, which they have the rest of their lives, unless they get medical treatment for HCV.

While some people experience symptoms such as fatigue, nausea and jaundice (yellow skin or eyes) when they first become infected with HCV,

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**

the majority of people (about 80%) experience no symptoms whatsoever and do not know that they have become infected. Over time, however, most people do develop symptoms, though they are generally vague and unspecific, and not easily attributable to HCV.

be present. This means that while an antibody test is important to determine whether HCV exposure has occurred, it is not sufficient to determine whether or not a person is currently infected with HCV.

Write on board Anti-HCV

HCV symptoms include: ** ** ** ** ** ** ** ** ** **

Fever

Fatigue, tiredness Loss of appetite Nausea

Vomiting

Stomach pain

Dark urine (piss)

Clay-colored bowel movements (poop/shit) Joint pain

Jaundice (yellow color in the skin or eyes)

Question for participants

How do you know if you have HCV?

Elicit answers from participants. Correct any misconceptions or inaccurate information. Because HCV is generally asymptomatic (you don’t have symptoms or feel sick), the only accurate way to see if you are infected is with a blood test. It can take years and years for someone to start feeling sick from their HCV infection, so young people generally have no idea if they have HCV unless they get tested.

When people do a lot of drugs and partying, are dependent on opiates and/ or are homeless, they often don’t feel very good for a lot of reasons. We hear a lot from young adults who swear they have HCV because they feel like shit, but until they get tested, there is no way to know who has it and who doesn’t.

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HCV PCR

As we mentioned, for anybody who has been exposed to HCV, regardless of whether or not they have cleared the virus spontaneously or through medical treatment, antibodies (protectors) will

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TMA Most of the time, if someone says they’ve had an HCV test, it was likely an antibody test. The HCV rapid test is an antibody test only. The only way to find out of someone is currently infected with HCV is to have BOTH an antibody test and an RNA test. At UFO in San Francisco, we always conduct two tests for our new clients who don’t know their HCV status. ** **

Anti-HCV (to see if you have been exposed to HCV)

HCV RNA by PCR or TMA (to see if you are currently infected with HCV)

Anti-HCV (aka the antibody test). This test will tell whether a person has ever been exposed to HCV by checking to see if a person has antibodies (protectors) to HCV. The rapid HCV test is an antibody test.

HCV RNA by PCR. This test is the most common test performed to determine whether or not you are currently infected with HCV. This test detects HCV RNA and measures the amount of virus (attackers) in the blood. The amount of virus in the blood can vary greatly and does not indicate how bad the disease is.

HCV RNA by TMA (transcriptionmediated amplification testing). This is another test that might be performed to detect whether or not a person is currently infected with HCV. TMA tests indicate if HCV RNA is present in the blood, but does not indicate the amount of virus that is present. The result of a TMA test will be “negative” or “positive” rather than a number. TMA tests generally can identify small levels of HCV virus that PCRs can miss. www.ufomodel.org


4F Implementing UFO: Education & support group Session 1 - Hepatitis ABCs Question for participants What happens if you clear HCV? Can you get it again?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Yes. Re-infection with HCV is possible. Not only that, but some research studies suggest that re-infection can happen as often as the first infection. If you were one of the lucky 15-25% of people exposed to HCV who spontaneously cleared the virus, next time you might not be so lucky. Chronic infection can and does develop after re-infection.

Thank participants for their time and participation. Invite anyone who wants more information to talk privately with you or another staff person, or offer web and written resources. Remind everyone of topic that will be covered at next session.

NOTE: At the end of this session, participants might be interested in getting tested for HCV and getting HAV and HBV vaccines. If at all possible, have someone on hand for testing and administering vaccines. If not, have accurate, up-to-date referrals available for young adults to get tested.

It’s extremely important to never share needles, cookers, water, tourniquets or anything you use when injecting so that you limit your risk of exposure. Bleaching needles does not kill HCV infection, so be sure to have cleans on you all the time. Complete stopping of drug use is the only way to really reduce your risk of HCV exposure. If you’re not ready for that, do all that you can to be clean and safe while using.

If you inject, it’s important to get tested regularly for HCV, as often as every 3-6 months. Remember that it’s not only drug users that are at risk for HCV infection. Anyone who injects anything is at risk. This includes people injecting steroids, hormones and silicone. Being careful and knowing your status can help keep yourself and others safe.

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4F Implementing UFO: Education & support group Session 2 - Keeping you and your friends healthy Session 2: Keeping you and your friends healthy: How to decrease HCV transmission risk Format: Video, discussion, Q&A

Teaching materials required: Computer with Internet access to play video, whiteboard, chalkboard or paper tablet and stand for writing information, handouts and brochures

At the end of this session, participants will be able to **

Define routes of transmission of HCV

**

Describe strategies for reducing their transmission risk

**

**

Describe the major risk factors in their own lives, including the impact of injection

Describe the importance of reducing risk whether HCV+ or HCV-

Background for facilitators

Before this group, you should read through this entire section, as well as any materials you’ll be handing out and watch the video.

It is important to address people who are both HCV-negative and -positive in this session. People who are HCV-negative should learn what activities increase their HCV risk and what they can do to decrease their chances of contacting HCV. People who are HCV-positive should learn how to keep themselves from transmitting HCV to others. A thorough understanding of HCV transmission and prevention can help an individual decrease their risk for transmission and improve understanding of and communication about the virus.

Questions for participants and information to write on the board are presented in boxes in this manual. Answers are written after the questions. These answers do not need to be read verbatim, but are to give facts and guide what you will say. A seasoned facilitator will be able to keep the factual content and adapt the wording to fit their own style and audience.

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To begin this session, show the video “UFO Model: Session 2: How to decrease HCV transmission risk.” This video is available online at: www.ufomodel.org/video-tutorials or www.youtube.com/UFOforIDU.

Write on the board HIV Hepatitis B (HBV) Hepatitis C (HCV)

Ask participants to rate, from most likely to least likely, which is most likely to be transmitted from needle use.

1. HBV = most infectious (3 out of every 100 needle shares)

2. HCV = less infectious (1.8 out of every 100 needle shares) 3. HIV = least infectious (3 out of every 1,000 needle shares) HBV is the most infectious virus that can be transmitted through needle sharing. HCV is less infectious than HBV, but far more common among drug users, so is associated with very high risk. HIV is the least infectious of these three viruses through needle use. Question for participants

What are specific ways HCV can be transmitted?

Elicit answers from the group. Write answers on board. Go through each answer and address it specifically. Make sure to clear up any misconceptions or address common routes of transmission that were not listed by the group.

Ways HCV can be transmitted HCV is extremely viremic, meaning that just a small amount of blood can contain a lot of HCV. HCV is also extremely hardy, and can live outside the body for extended periods.

Needles. This is the most common route of transmission of HCV. When someone who has active HCV infection uses a needle www.ufomodel.org


4F Implementing UFO: Education & support group Session 2 - Keeping you and your friends healthy and then shares it with someone else, the virus can easily enter the second person’s body. Bleach has not been proven effective for cleaning syringes infected with HCV. The only effective way to stop HCV transmission risk through needles is to use a sterile needle every time you inject and never share your needles with another person.

Syringes. HCV can be transmitted by sharing syringes through practices like backloading (transferring drug from the barrel of one syringe to another). The HCV virus can survive in the barrel of a syringe for a long time. Larger syringes, like those used for injecting hormones or muscling, have larger reservoirs where HCV can hide, increasing HCV risk.

Cottons, cookers, water, alcohol wipes and other injecting equipment. Most of us know that HCV can be transmitted through needles, but we often forget about the other works we use while injecting and the risks they carry. All paraphernalia used for preparing and injecting drugs, especially cookers and cottons, but also water, tourniquets and anything else, can contain blood and carry HCV and sharing them should be considered as risky as sharing a needle. Blood can also be found on the surface where someone shoots, so using a clean surface, or putting down newspaper can help.

Non-injecting drug equipment. While no one is sure of the exact risk associated with drug-using equipment such as straws or other equipment used to snort or inhale drugs or pipes used to smoke crack, it is important to remember the basic principle that HCV is transmitted through blood-to-blood contact. That means that if someone’s lips or nostrils are dry and cracked or they have an open sore, HCV could be transmitted. A person who snorts drugs often could have a damaged septum (part inside the nose), increasing the chances of blood-to-blood contact. Though sharing this type of equipment certainly poses less of a risk than sharing needles and injection equipment, consider this a risk and do not share your non-injecting drug equipment either. Blood transfusions. Today, all blood www.ufomodel.org

is carefully screened for presence of HCV before it is used for transfusions, but before 1993, it wasn’t. People who received blood transfusions before 1993 should get tested for HCV.

Sex. Compared to HBV, HCV is rarely transmitted through sex. HCV is only transmitted through blood-to-blood contact. Anal sex, rough sex, dry sex and fisting can pose a risk because of tears and bleeding that can occur in the anus or vagina. Remember, there may be tiny tears that can be tough to see but are present. Correctly and consistently using condoms and lube will help decrease transmission risks.

If you are in a monogamous relationship (only having sex with one partner), and are not having anal sex, rough sex, dry sex or fisting, you do not need to use a condom to prevent getting or transmitting HCV, even if you and your partner are serodiscordant (one of you is HCV-positive and the other HCV-negative). However, it’s probably a good idea to use a condom if you or your partner is menstruating or you have riskier sex. No matter what, be sure to talk about it so that you and your partner are clear about any possibility of transmission. If you’re having sex with more than one partner, it’s always best to use a condom and lube. If you have HIV and are a man who has sex with other men, there is an increased risk of HCV infection, even if you don’t inject. Use condoms and plenty of lube to reduce the risk of HCV infection.

Remember that although HCV is not commonly transmitted sexually, HIV and STIs are. STIs such as syphilis, gonorrhea and chlamydia are common among young adults. Correctly using condoms and lube every time you have sex is the best way to avoid getting or transmitting HIV and STIs. Fights. There are some documented events of HCV being transmitted during fights. Remember that HCV is passed through blood-to-blood contact and fighting can lead to exposure when skin is broken.

Tattoos. There is some evidence that tattoos received in non-sterile settings, especially in jail, have passed HCV from person-to-person. Make sure that for any

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4F Implementing UFO: Education & support group Session 2 - Keeping you and your friends healthy tattoo you get, a clean needle is used, inkpots are single-use and sterile, and the person giving you the tattoo is trained in sterile procedures. All tattoo parlors in the US follow universal standards that demand the use of a new needle and ink pot for every customer Pregnancy. Transmission from HCVinfected mothers who are otherwise healthy to their newborn is not common, occurring less than 6% of the time. HCV will not infect a fetus. Delivery is the only time this could possibly occur, when the baby’s blood and mother’s blood are in contact. There is no evidence that HCV is present in breast milk. Question for participants

What is your biggest risk for HCV? What can you do to decrease this risk?

Go around the room and have everyone answer this question. For people who state they have no risk, ask them to describe practices they use to be safe. Ask if they do this all of the time, most of the time or some of the time. For people who state “most of the time” or “some of the time” ask them to think about what causes them to take more risks and how they could decrease the frequency with which this occurs.

Ways to decrease transmission risk Stop injecting drugs. This is the single most effective way to decrease you risk of contracting HCV. Of course, it’s much easier to say this than do this. But talk to us [facilitator] about your options. There are more than you may think: NA or other programs, residential treatment programs, methadone or buprenorphine if you are an opiate user. Getting therapy or treatment for depression and anxiety also can help. Stopping drug use is a long difficult process, but with patience, support and commitment, you can do it. Use sterile needles and injection equipment every time. Carry clean equipment on you all the time. Know where the nearest needle exchange is and know its hours. If you need more needles than your needle exchange gives out, let the staff there know you need more. Generally they want to provide you with what you really need. Needle exchanges often carry musclers – big rigs that can be used to inject hormones and silicone. If you don’t see what it is you need, don’t be afraid to ask!

Many pharmacies sell clean needles too. You can always go to your nearest Walgreens or other drugstore –many are open 24 hours. Don’t share any of your equipment (water, cooker, cotton, alcohol wipes, tourniquet, syringe barrel, etc.) or lend your used equipment to anyone. Get rid of your used equipment as soon as you can dispose of it properly. Gatorade containers or things that resemble them are great for holding biohazardous material – they are thick and have a screw top. Get tested. Knowing your status will help you understand your risk to yourself and to others. Get treatment. Treatment is available for HCV. It isn’t easy and it isn’t for everyone, but it is an option. With treatment, it is possible to get rid of the virus in your body. Re-infection is possible, so other prevention measures are still important. We can talk about treatment in a fifth session, so if you’re interested, be sure to let the facilitator know. Communicate with your partners.

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4F Implementing UFO: Education & support group Session 2 - Keeping you and your friends healthy Speak up! Talk about your hep C status and ask about the status of the folks you inject with. Don’t be afraid to have this conversation—the more you do it, the easier it gets. Talking about your status is another way to reduce your risk, though of course isn’t going to replace the benefits of using a sterile needle or injecting equipment. Be cautious with tattoos and fights. Use caution getting tattoos. Know your tattoo artist and be sure they are using clean, sterile equipment. Try not to get into fights. Practice using non-violent conflict resolution techniques or walk away from escalating situations.

Don’t share pipes, straws or other equipment used to inhale drugs. If you’re smoking crack with others, use your own protector to put on the lip of the pipe and take if off when you’re done. The heat from crack pipes often can lead to burning and blistering on the lips, which provides a route for HCV transmission. Use your own straw when snorting. Don’t share with others or lend your equipment to anyone else.

Use condoms and lube correctly. Condoms can protect you from HIV, STIs and unwanted pregnancy. Lube will decrease the likelihood of tears and blood exposure occurring during rough sex. Use of condoms, latex gloves and lube can help decrease HCV transmission from bloodto-blood contact during sexual activity. Additionally, avoid sex when menstruating or if open sores are present. Kissing, hugging and touching will not transmit HCV. Question for participants

Has anyone here disclosed their HCV status to others? What kind of responses have you had?

Give anyone who chooses to talk a chance to describe their experiences of disclosing HCV status to injection partners, sex partners, family or friends. If the person is describing a situation where the reaction was negative, help them discuss why the reaction might have been that way, and how they might address some of the issues. www.ufomodel.org

Invite anyone to practice disclosure. If another group member is willing to role play with the person practicing, have them try to set a realistic example of someone receiving the news. If no one in the group wants to play opposite the person disclosing, the facilitator should do it. Try to help the person work through both a positive and negative disclosure situation. Question for participants

What other questions do you have about HCV transmission and prevention?

Give everyone a chance to ask a question or to clarify a misunderstanding. If you are unsure of a correct answer, don’t guess. Make sure to note the questions and let the participants know that you will try to return the following session with the answer. Below are common questions we get from participants. What if I’m already HCV positive? Why the fuck should I care? Even if you already have HCV, there are still plenty of reasons to care about preventing transmission.

Social responsibility, or trying not to pass your infection to others. Staying negative isn’t just someone else’s responsibility. It’s your responsibility to let others know that you’re positive. Knowing that you are positive, don’t lend your equipment out to others, even if they ask. You got this infection from someone. Try not to keep passing it on.

Superinfection. Superinfection happens when you get infected with a second type of HCV on top of your first. For example, if you are infected with type 1, you can get a second infection with type 2. This will significantly speed up the rate of liver damage caused by HCV and might increase the likelihood that you get liver cancer. Superinfection happens a lot.

Re-infection. Even if you’ve gotten infected once and spontaneously cleared it, you can still get infected again. Multiple times. Just because you cleared it once, doesn’t mean that next time you will clear it again. Your

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4F Implementing UFO: Education & support group Session 2 - Keeping you and your friends healthy body will not always react in the same way. Can I get it from going down on my girlfriend when she’s on the rag?

It is theoretically possible, if you have open sores and your partner is on her period. But you’re much more likely to get HCV from sharing needles and equipment. Remember, the only way you can get HCV is if the blood of someone who has HCV gets into your bloodstream.

Everyone I know has it. I’m going to get it at some point. Why the fuck should I care? It may be that you’re hanging out with people who inject drugs and it seems like everyone has HCV. Or that it’s so easy to transmit that you’re bound to get HCV. It’s easy to feel that way, but the truth is, if you work to stay negative, using the tools we just discussed, it is possible. People do it. You can too if you want.

I heard that you can get HCV from yourself, is that true? No, that is not true! The only way you can get HCV is if the blood of someone who has HCV gets into your blood stream. If you don’t have HCV, you cannot give it to yourself by shooting with a needle you already used. If you do have HCV, you can’t re-infect yourself by using a needle you already used. However, reusing your own needles puts you at risk for bacterial infections like abscesses and endocarditis. Thank participants for their time and participation. Invite anyone who wants more information to talk privately with you or another staff person, or offer web and written resources. Remind everyone of topic that will be covered at next session.

HCV can be a lifelong disease that can lead to cirrhosis and liver cancer. You never know where your life is going to take you. We want you to stay healthy and safe so you can live a long, awesome life. I’m usually safe, but I slipped up once and probably got HCV. Why should I worry about risk now?

It’s OK that you slipped up, but you really don’t know if you’ve contracted HCV. Get tested so you can know for sure. It’s important to take care of yourself anyway, whether you are HCV-infected or not. It’s extremely important to never share needles, cookers, water, tourniquets or anything you use when injecting so that you limit your risk of exposure. Bleaching needles does not kill HCV infection, so be sure to have cleans on you all the time. Complete stopping of drug use is the only way to really reduce your risk of HCV exposure. If you’re not ready for that, do all that you can to be clean and safe while using. Learn your status and be safe!

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4F Implementing UFO: Education & support group Session 3 - Body and mind Session 3: Body and mind: how drugs, alcohol and HCV affect your physical and mental health Format: Discussion, Q&A

Teaching materials required: Computer and large screen for showing video, whiteboard, chalkboard or paper tablet and stand for writing; handouts and brochures; demonstration materials (model of pictures of healthy liver and cirrhosis) NOTE: This Session covers a lot of material and is generally longer than the other sessions (90 minutes)

At the end of this session, participants will be able to: **

Describe the basic functions of the liver

**

Describe harm reduction techniques to reduce the impact of drugs and alcohol on the liver

**

** **

Describe the physical impact of drug and alcohol use on the liver Discuss the role of mental illness in drug use and hepatitis transmission Describe local resources for mental health care

Background for facilitators

Before this group, you should read through this entire section, as well as any materials you’ll be handing out and make sure you know how to handle the demonstration livers (if you have them).

Questions for participants and information to write on the board are presented in boxes in this manual. Answers are written after the questions. These answers do not need to be read verbatim, but are to give facts and guide what you will say. A seasoned facilitator will be able to keep the factual content and adapt the wording to fit their own style and audience.

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To begin this session, show the video “UFO Model: Session 3: Body and mind.” This video is available online at: www.ufomodel. org/video-tutorials or www.youtube.com/ UFOforIDU. Questions for participants Where is the liver located?

Have 1 or 2 participants describe, then demonstrate, where the liver is in the body. Then ask What does the liver do?

Have participants describe the various functions of the liver. Write each response on the board, then go through the list and describe the function in detail. Address any misconceptions that were stated in the discussion.

The Liver: Anatomy and Functions The liver is one of the most important and hardworking organs in your body. It’s like a super housekeeper for your body. Everything that you eat is digested in the stomach and intestines. All the blood leaving the stomach and intestines passes through the liver. The liver housekeeper then: ** ** ** **

Processes the blood and breaks down the nutrients and drugs Cleans them up

Turns them into useful products

Filters out any products that can hurt the body (sending it out into your piss and shit)

Another way to think about the liver is it’s like someone cleaning out your closet. It goes through all your clothes, gets rid of things that don’t fit or you don’t wear, and keeps what you really want.

The liver is located in the upper righthand portion of the stomach area, beneath the diaphragm, and on top of the stomach, right kidney, and intestines. Shaped like a cone, the liver is a dark reddish-brown organ that weighs about 3 pounds. The liver holds about one pint (13%) of the body’s blood supply at any given moment. UFO Model Replication Manual

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4F Implementing UFO: Education & support group Session 3 - Body and mind The liver is amazing: ** **

The liver can lose three-quarters of its cells before it stops functioning. The liver is the only organ in the body that can regenerate (grow back) itself.

Write on board

Functions of the liver

Fibrosis = scarring

More than 500 vital functions have been identified with the liver. Some of the more well-known functions include:

Cirrhosis = shrinking and hardening

** ** ** ** ** ** **

Production of bile, which helps carry away waste and break down fats in the small intestine during digestion

Production of cholesterol and special proteins to help carry fats through the body

Processing of hemoglobin for use of its iron content (the liver stores iron) Converting poisonous ammonia to urea (urea washed away in your urine/piss)

Clearing the blood of drugs and other poisonous substances Regulating blood clotting

Resisting infections by producing immune factors and removing bacteria from the bloodstream

When the liver has broken down harmful substances, it sends it out in the form of bile or blood. Bile enters the intestine and leaves the body in the form of feces/shit. Blood is filtered out by the kidneys, and leaves the body in the form of urine/piss. Question for participants

So let’s review now: What does HCV do to the liver? Have participants describe how HCV affects to liver. Be sure to address any errors or give further detail when necessary.

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housekeeper (liver) getting arthritis, bad knees, and a bad back. Doing the job gets harder and harder until he or she can barely move anymore and can’t work.

HCV primarily infects liver cells, known as hepatocytes. HCV causes scarring in the liver (fibrosis), making it harder to do its job. Eventually, the scarring can become so severe that the liver shrinks and hardens (this is called cirrhosis) and can’t function at all. Imagine your

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Question for participants What do drugs and alcohol do to your liver?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Alcohol and other drugs affect your liver more than any other organ in your body. The liver rounds up waste from chemicals that you put in your body. Those chemicals include recreational drugs as well as prescription drugs and medications, alcohol and even chemicals in the air you breathe. A weaker liver means less efficient “housekeeping” and, probably, a weaker you.

Heroin, cocaine, amphetamines (speed, meth), prescription drugs (oxycontin), hormones, silicone (including homemade silicon), alcohol, Tylenol and even tobacco are all toxins which the liver must process. The liver even has to process what you inhale while smoking cigarettes and pot. The more pressure you put on the liver by overusing these substances, the harder your liver has to work. Fibrosis, which is the scarring that leads to cirrhosis, builds up faster. The best thing you can do for your liver is decrease the amount of substances you use. This is especially true if you are a drinker. Alcohol has the biggest impact on the liver and speeds up liver damage more than any other toxin.

If you also have HCV (or any other kind of hepatitis), your liver is already working very hard to fight the disease itself. Anything extra makes the liver work that much harder. This speeds up the

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4F Implementing UFO: Education & support group Session 3 - Body and mind development of scar tissue, which is what leads to cirrhosis. The combination of HCV with drug or alcohol abuse can increase your chances of developing severe liver disease or liver cancer. Question for participants

What can you do to improve your liver health?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

The best thing you can do for your liver is to stop drinking or using drugs. Quitting smoking will promote liver health too. Remember that everything that goes into your body – from the air you breathe to the foods you eat to the medications you ingest – has to be processed by your body. Of course, quitting is easier said than done. If this is something you want and are ready to do, there are a lot of support systems to help you quit. Some people do well with support groups, such as Alcoholics Anonymous (AA) or NA. Residential rehab is available, even to people without insurance. There are medical detox programs and medically-assisted recovery programs for medications such as methadone and buprenorphine.

There are harm reduction groups and other support groups that you can go to if AA and NA don’t work for you. Having a group of peers working towards similar goals will improve your changes of longterm success in reaching your goals, whatever they may be. [Discuss with participants where and how they can access methadone, bupe or a residential program. Use local resource guide for referrals] If don’t want to quit, there are still lots of ways to improve your liver health or at least decrease the negative impact using can have on your liver.

any given time will keep your liver from having to work too hard. Wait as long as possible between each drink or each shot to give your liver time to process it. Drink water between each drink or shot. This lets your liver process fewer toxins at a time can help slow the development of scar tissue. Eat healthy. Eating a healthy, proteinbased diet can help the liver stay strong and healthy.

Drink water. Water can help flush toxins out of your body. If you are an active user, drinking water has many health benefits, including keeping you from becoming dehydrated and keeping you from drinking too much caffeine or alcohol. Sleep. Getting enough sleep also is important. Eastern medicine tells us that from 1 am to 3 am is liver time. That means that being asleep during that time keeps your liver healthy by giving it a chance to rest and recharge itself.

People often believe that there are herbal remedies for liver disease. There has been no research that proves that any herb cures HCV. However, research has shown that milk thistle improves their liver health and decreases liver inflammation. Other herbs, especially when combined with medications, can actually increase liver damage. If you do decide to take herbs and are taking any other medications, including methadone or psych meds, be sure to let your provider know.

Remember, we said that the liver is the only organ that can regenerate (grow back). Even if you have liver damage now, or elevated LFTs, you still can reverse the damage that has been done. Cirrhosis is permanent, fibrosis is not. The sooner you make changes in your habits, the longer your liver has to improve.

Drink or use less. Decreasing the amount you drink or use will help your liver stay healthier for longer. Drink or use less at one time. Decreasing the amount that you use at www.ufomodel.org

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4F Implementing UFO: Education & support group Session 3 - Body and mind Let participants know that youâ&#x20AC;&#x2122;re going to switch gears and talk about mental health now. Question for participants

Why discuss mental health in a group about HCV?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Many people with HCV have mental health concerns. Furthermore, it is well established that persons with serious mental health problems and/or substance abuse may be up to 10-times more likely to be infected with HCV than the general population. In other words, people with mental illness have much higher rates of HCV than people without mental illness. Mental health affects HCV in many ways. First of all, being mentally unstable can increase the likelihood that you get HCV, or that you transmit it to others. ** **

Depression can cause people not to take care of themselves or others.

Other diseases like schizophrenia and manic states can cause a person to take risks that they otherwise would not.

Second, it is common for people to use drugs as a way to deal with some of their untreated psych issues. **

A lot of people who hear voices, feel sad, anxious depressed or have other psychological symptoms, use drugs as a way to medicate and cover up their problems.

Third, one of the goals of this group is to discuss ways to better take care of yourself, and dealing with your mental health is an important part of doing that. Question for participants

How might mental illness affect HCV?

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Severe mental illness Persons with a severe mental illness such as a psychotic disorder (schizophrenia) or bipolar disorder are infected with HCV at much higher rates than the general population. A study found that approximately 20% of adults who have a severe mental illness also have HCV. In contrast, only about 2% of the general population has HCV. Unfortunately, most people with a severe mental illness do not know they have hepatitis C. Also, they commonly do not have access to or seek medical care as often as people without a severe mental illness. This means they are less likely to be tested for HCV.

Cognitive problems

Substance abuse can cause permanent cognitive problems. Several studies have documented the negative effects of marijuana, cocaine, opiates, amphetamine, and alcohol use on cognitive function and the brain. Many people with cognitive problems also do not know they have HCV. They may not have access to or seek medical care and may be less likely to be tested for HCV. Question for participants

How might HCV affect mental health?

Elicit answers from participants. Correct any misconceptions or inaccurate information. There are three ways HCV can affect mental health: 1. At diagnosis

2. With chronic illness 3. Getting treatment

Common reactions to being diagnosed with a chronic infectious disease such as hepatitis C include: ** ** ** **

Feeling emotionally numb and in shock Becoming irritable or angry Crying more than usual

Not spending time with friends and family

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Worrying about infecting others

**

Feeling like no one understands

** ** **

Feeling dirty

Feeling uncertain about your future Feeling like life is not worth living

Question for participants

What resources are there for improving mental health?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Groups. Support groups not only foster community but they can help you see how other people cope with some of the same problems you might have. Going to a support group can help you meet others who share your experiences. It can be a good way to find out who is a really good care provider, what medications have worked for other people and other helpful resources. Look at local drop in centers, community-based clinics, hospitals, SEPs and even churches for groups that may be of use and interest for you.

Talking to someone. Friends, peers, case workers, family, nurses and outreach workers may be a resource for you. If you’re experiencing any type of mental distress, from depression or anxiety to hearing voices or having visual hallucinations, talking to someone about this is important. Others aren’t always aware of what might be going on with you if you don’t tell them. Sometimes having a supportive listener can do wonders. Other times we need more help. This first step to dealing with a problem is to let someone know what is going on.

Medication. Sometimes it’s a really good thing! Often we are resistant to taking medications to treat mental illness. It’s understandable that many people feel that this is somehow creates an artificial mood, but consider a few things:

1. Most mental illness is caused by actual chemical imbalances in your brain. Sometimes no matter how hard you try, you can’t change what’s going on in your head due to these imbalances. Medication might be necessary to help you find that “reset” button.

2. Lots of people us drugs as a form of self-medication. Does this sound at all familiar? It may, and if that is that case, remember that the medications that you get from your doctors are far safer, have better dosing and are legal.

Going on medications to treat mental illness doesn’t mean that you can’t use drugs. It does mean that some of your motivation and drive to use can change once you’re getting the proper medication. Monitoring. Everyone experiences emotional waves, peaks and valleys. Keep track and let someone else know what’s going on. Monitor your mood and let someone know when you’re experiencing changes.

Getting help. Everyone suffers from some form of mental distress in their lifetime. It’s scary and can make you feel really alone. Letting someone know about what is going on is important. The next step is to try to deal with the problem. Therapists, social workers and psychiatrists are all trained to work with people who are struggling with mental health. www.ufomodel.org

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4F Implementing UFO: Education & support group Session 3 - Body and mind Question for participants Do you know of places you could go if you were having a mental health crisis? What about if you just needed some ongoing support? Where would you go?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

Review resources in your area. Cover crisis centers and places young adult IDU can go when they are having a psychiatric emergency. Also discuss local support groups, resources for therapy and places where young adult IDU can be prescribed necessary medications for mental health. Thank participants for their time and participation. Invite anyone who wants more information to talk privately with you or another staff person, or offer web and written resources. Remind everyone of topic that will be covered at next session.

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4F Implementing UFO: Education & support group Session 4 - Relationships and risk Session 4: Relationships and risk Format: Video, discussion, Q&A

Teaching materials required: Computer with Internet access to play video, whiteboard, chalkboard or paper tablet and stand for writing information, handouts and brochures

At the end of this session, participants will be able to: **

Discuss how relationships impact hepatitis C risk

**

Discuss ways to minimize risks in relationships

**

**

Consider how money, trust, drug knowledge, violence and alcohol use in relationships might affect hepatitis C risk

It is important to use gender-neutral names to allow everyone in the room to consider the balance of power in their relationship and how that might contribute to risk. It is likely that there will be some participants who do not identify as heterosexual.

Questions for participants and information to write on the board are presented in boxes in this manual. Answers are written after the questions. These answers do not need to be read verbatim, but are to give facts and guide what you will say. A seasoned facilitator will be able to keep the factual content and adapt the wording to fit their own style and audience.

Describe local resources and safety planning when relationships are unsafe

Background for facilitators

Before this group, you should read through this entire section, verify any materials youâ&#x20AC;&#x2122;ll be handing out and watch the video. You should have a domestic violence referral or hot line number and give it to all participants, in case someone does not feel comfortable asking after the group. This is an important topic to cover and one that we get asked to address frequently in San Francisco. This topic is not about intimate partner violence; it is about how issues of love and trust can complicate risk-taking behavior. It is extremely common to have couples attending the same group session. Power dynamics can come into play and there might be instances in which asking people about their specific situation is uncomfortable or might put someone at risk for violence.

One way to approach this discussion is to create an imaginary couple, Alex and Casey, to use in examples. We can then illustrate examples using this couple without implicating anyone in the room. We have found that participants enjoy this and easily embrace the notion of using Alex and Casey in their own stories and questions.

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4F Implementing UFO: Education & support group Session 4 - Relationships and risk To begin this session, show the video “UFO Model: Session 4: Relationships and risk.” This video is available online at: www. ufomodel.org/video-tutorials or www.youtube. com/UFOforIDU. Being in a relationship can be great. Everyone enjoys feeling loved, appreciated and taken care of. But as we all know, relationships aren’t always easy, and drug use can complicate things. In this session, we’ll talk about some issues that might affect you and your relationships: trust and intimacy, money, drug knowledge and violence. The term relationship can mean different things to many people. It may refer to ** **

a love relationship with a girlfriend/ boyfriend/partner/lover/spouse, which may be sexual or not

an intimate friendship or injecting or travelling partner.

You may have more than one relationship, and dynamics between you may be different in each. Questions for participants

How do relationships affect HCV risk? Can you think of ways that a person might have increased or decreased risks in relationships? Elicit answers from participants. Correct any misconceptions or inaccurate information. ** ** **

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Injecting drug use often occurs in couples and groups, and is often accompanied by informal information seeking and giving. Young adult IDU are often unsure of their hepatitis C status and that of their sexual partners. People who inject drugs develop particular injecting practices with their intimate partner which can be different to the practices they have with other people.

An intimate partner may be close and trusted and this can alter the perception of risk in relation to drug injecting practices. Research has

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shown that young adult IDU feel that familiarity in a long-term sexual relationship made it easier to share equipment.

Young adult IDU may feel that it is useless to try to avoid acquiring HCV if they are in a relationship, using together and/or having unprotected sex. They assume that they already have, or soon will, seroconvert.

Some of the common issues that influence drug use behavior and HCV risk among young adult IDUs are **

Trust and intimacy

**

Violence

** **

Money

Drug knowledge

We are going to talk about these issues, and then talk about ways to protect yourself and have healthier relationships. These are issues that affect most people in relationships, but we are specifically interested in how using drugs and injecting within relationships can influence your actions and risk taking.

Trust and intimacy

Questions for participants Can you think of examples when issues of trust and intimacy have affected your or someone else’s risk-taking behavior? How have you seen this issue negotiated within partnerships? Elicit answers from participants.

Relationships are built on trust and intimacy. When you’re with someone you trust, you may decide to share more things with them, including drugs and injecting equipment. **

**

Many young adults, especially ones who have left or been kicked out of their homes, are eager to find kindred souls and form their own family of choice. Sharing food, resources, living arrangements and drugs can be seen as a way to deepen bonds and trust and strengthen their family. The decision to share injecting

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**

**

equipment is often influenced by whether young adults had had sex, particularly unprotected sex.

For many young adult IDU couples, injecting drugs together is an intimate, personal act that can enhance intimacy. Research shows that in some relationships, this can include sharing injecting equipment. Sometimes young adults don’t know if they or their partner(s) have HCV, and don’t know if they’re putting themselves or others at risk for getting HCV.

Sometimes partners do know their status. Research shows that sharing injecting equipment within discordant relationships (where one person is HCV-infected and the other is not) can be a bonding act.

Some young adults are introduced to drug use and injecting by one of their relatives. Research shows that being related to your injecting partners increases trust and may also increase your risk of getting HCV.

Money

Questions for participants Can you think of examples when money issues have affected your or someone else’s risk-taking behavior? How have you seen this issue negotiated within partnerships? Elicit answers from participants.

**

from another syringe, can transmit HCV, even if those people never share needles to inject themselves. The HCV virus can live inside a syringe for a long time, and syringes with larger barrels are more likely to transmit HCV than smaller syringes.

Transgender young adults who do not have insurance or can’t afford legal hormones or silicone may rely on others to shoot them with hormones. At “pumping parties,” young transgender women often share homemade silicone and the needles used to inject it.

Drug knowledge

Questions for participants Can you think of examples when drug knowledge issues have affected your or someone else’s risk-taking behavior? How have you seen this issue negotiated within partnerships? Elicit answers from participants.

Often in partnerships, one person may have more experience with drugs and injecting than the other. Someone may not know how to find their own vein, or how to fix up the shot, or have a connection to buy drugs, and may rely on the partner to do these things for them. **

Suburban young adults who become addicted to prescription opioids such

Often one partner in a relationship has more money—they may have a job, or get help from their parents, or be better at panhandling or stealing. The person with the money may make decisions such as buying the drugs and injecting equipment, or where you’ll live or sleep that night. ** **

The person who buys the drugs often shoots first and if there are no extra sterile syringes, gives their partner the syringe to use after them.

Pooling money with another IDU to buy drugs, may increase risk. Research shows that backloading, or using a syringe to directly draw drugs

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**

**

**

**

as oxycontin, often have very little knowledge about safer injecting or HCV transmission. Research shows that injecting opioids and fishing for a vein (multiple stabs to find a vein for injecting) can be HCV risks. Initiation into injecting drug use often occurs within relationships and families. When this happens, drug injecting behaviors are often negotiated between the partners and each partner is assigned a role (for example, drug gathering or preparation). These practices can become ritualized which can make it harder to change or improve practices.

Young adult IDU who cannot inject themselves rely on their partner to inject them. Being injected by someone else is associated with an increased risk of HCV transmission.

Sometimes, the person with more experience wants to protect their partner from “entering the lifestyle” or becoming a junkie, so they fix the drugs and inject for them. However, this could lead to someone being dependent on the person who injects them.

Typically, women are less likely to be able to inject themselves and therefore are reliant on their male partners. This reinforces traditional gender patterns in relationships with males taking the more active and dominant role. Finding another woman who knows how to inject, and learning, can be an important step towards risk reduction as well as selfreliance.

Sometimes relationships involve violence from one or both members of the couple. Violence can be physical or verbal and may come in less obvious forms like through manipulation. Some people become more violent when they’re high or dope sick. Fear of violence can affect someone’s behavior almost as much as actual violence.

As we talked about in the previous session (Body and mind: how drugs, alcohol and HCV effect your physical and mental health), many young adult drug users have mental health issues that are untreated or medicated by shooting drugs. Violence may be more common among IDU.

**

**

**

Violence

Questions for participants Can you think of examples when issues of violence have affected your or someone else’s risk-taking behavior? How have you seen this issue negotiated within partnerships? Elicit answers from participants. 142

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**

Decisions about injecting and other risks are often influenced by the perceived protection provided by an intimate relationship. Young women who experience homelessness, joblessness and addiction can end up alone on the streets and may need the safety provided by a relationship as much as the companionship. That can sometimes put them in a more risky situation than they’d prefer. Research shows that many young homeless women enter into relationships with older men, and those relationships are usually abusive. For most young drug users, there is a hierarchy of risk. It isn’t surprising that some people might risk acquisition of a chronic disease if it means basic survival, like having a place to sleep and food to eat. Addiction is a powerful disease that can drive young adults to enter risky or unsafe relationships in order to score drugs. The violence of a relationship or utilizing used equipment can be seen as mild compared to being dope sick.

In relationships where there are issues of conflict it may be especially difficult to raise and discuss issues around HCV. If someone contracts the virus, there can be anger or blame around seroconversion. It sucks to get a disease and people tend to want to blame someone. www.ufomodel.org


4F Implementing UFO: Education & support group Session 4 - Relationships and risk Healthy relationships Going over all the issues that can arise in relationships with young adult drug users can be scary. We know that although these things might happen, there are ways to minimize the risk involved. We’re here to talk about that. As we’ve mentioned in past sessions of this group, communication and carefulness are critical ways to minimize these types of problems. Communication can help you talk about risk. Carefulness can help you avoid risk. Question for participants

What are strategies that can help people talk about staying safe within relationships?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

We could all use some support and advice in our relationships. To minimize your risk for HCV, here are some things you can do. Educate yourself. If you are new to injecting, or if you’ve been relying on someone else to fix the drugs and inject you, get some knowledge! If there’s an SAP near you, ask one of the staff or volunteers. They likely have brochures and advice for you. Online, check out the Chicago Recovery Alliance’s website Any Positive Change (anypositivechange.org). They have great images and instructions for learning about safer injecting.

those dirties as soon as possible! Carrying around used equipment can set you up to have an accidental exposure (and can increase your risk of getting arrested). Protect each other. Talk to each other about HCV and your status. It might be intimidating at first, but it gets easier, and talking can strengthen trust in relationships. Decide together on a plan to avoid HCV risk using some of the tools we discussed. Negotiate ways to protect yourself and your partner.

Avoid sexual risk. While you’re far more likely to get HCV through injecting, there is a risk related to unsafe sex where blood is present in both partners. This is particularly true with anal sex between men, and with rough sex play that can causes tears or cuts. If blood might be present during sex, use a condom! This can help protect you from HCV, HIV, HBV and a variety of other STDs.

Get help. If you’re in a relationship where you experience violence, feel controlled or are afraid that your partner puts you at risk for hep C, get help. Protect yourself by making a safety plan and knowing your resources. Talk to your facilitator to find out what’s available for you. Thank participants for their time and participation. Invite anyone who wants more information to talk privately with you or another staff person, or offer web and written resources.

Get tested together. Remember, if you both inject, you’re both at high risk for getting hep C. Getting tested together can ensure that both of you regularly know your status. Talking with counselors can help you identify the risks you have, and find strategies to minimize those risks. If you’re interested, counselors can talk to both of you at the same time.

Don’t share equipment, and set up systems to avoid accidents. To help avoid accidental sharing, you can color code syringes and cookers with a sharpie or nail polish. It’s helpful to store your outfits in separate spaces and have easy access to plenty of clean equipment. And get rid of www.ufomodel.org

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4F Implementing UFO: Education & support group Add-on Session - HCV treatment 101 Add-on Session: HCV treatment 101 Format: Discussion, Q&A

Teaching materials required: Whiteboard, chalkboard or paper tablet and stand for writing information, handouts and brochures

At the end of this session, participants will be able to: ** **

Describe the medications used in treatment and their side effects

Describe the benefits and drawbacks of treatment for HCV infection

Background for facilitators

Before this group, you should read through this entire section, as well as any materials you’ll be handing out. Below is a quick overview of HCV treatment.

Treatment for HCV is available, but the length of the treatment, side effects and a somewhat low success rate traditionally have caused providers to adopt a “watchful waiting” practice. The large percentage of IDU with the virus, and the presence of other issues and diseases including HIV/AIDS, mental illness and substance use also play major roles in barriers to treatment offered to those infected with HCV. Traditionally, treatment had been difficult to access for the IDU community. However, with education, proper preparation, and access to willing providers, it is possible for IDU to get treatment for their HCV.

NOTE: As we write this manual (Summer 2013), there is exciting news about advances in HCV treatment and prevention research. It is likely that new treatment modalities will be approved by the FDA and made available in the next few years. Questions for participants and information to write on the board are presented in boxes in this manual. Answers are written after the questions. These answers do not need to be read verbatim, but are to give facts and guide what you will say. A seasoned facilitator will be able to keep the factual content and adapt the wording to fit their own style and audience. 144

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Question for participants Can you treat HCV?

Ask participants what they think about this answer. Give everyone in the group a chance to share their thoughts on this question.

The bottom line is, yes, you can treat HCV. Unfortunately, it is a lot easier to say this than it is to actually treat your HCV. Treatment is a type of chemotherapy, so it is hard on the body, lasts a long time and isn’t always effective. It is important to get help to decide whether HCV treatment is right for you.

There are no vaccines to prevent HCV. We recommend that anyone who injects drugs get the vaccines for HBV and HAV.

Write on the board Interferon Ribavirin

Ask participants what these are and what they have heard about these medications. Elicit answers from the group and write down all answers. Go though each answer and address fact and those that are myth.

Interferon

Interferon is a natural protein produced by the body to fight off disease, and a treatment for HCV. Interferons are proteins naturally produced by the body as a way to fight off diseases. Interferon prevents the entry of a virus into a cell, which limits the amount of new cells that become infected. Interferon also inhibits the replication of viruses (new viruses being created). Interferon helps the production of certain cells of the immune system which can kill viruses and infected cells. Interferon, the HCV treatment, is a synthetic (man-made) form of this natural protein. Synthetic interferon does the same thing as natural interferon, inhibiting viral entry into cells, inhibiting viral replication and stimulating an

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4F Implementing UFO: Education & support group Add-on Session - HCV treatment 101 immune response that can kill virus and infected cells.

There are two types of interferon used in HCV treatment 1. Standard interferon

2. Pegylated interferon

Both medications are only available as shots under the skin, usually into stomach fat. Standard interferon is administered three times a week; pegylated interferon needs to be injected only one a week.

Ribavirin

Ribavirin is an oral medication taken daily in the treatment of HCV. Ribavirin works well when used in combination with interferon, but cannot work alone to treat HCV. If you do get treatment, it will be up to the person doing the treatment to determine which type of interferon will be used, whether or not ribavirin will be used and at what dose (this is usually determined by how much you weigh). The length of treatment varies depending on what type of HCV you have, and usually lasts either 6 months or one year. The good news is that there are a lot of medications being tested that are showing great promise in advancing HCV treatment. While the medications that mostly likely will be available in the very near future continue to use interferon as the ‘backbone’ of the treatment regiment, research suggests that these medications not only improve the likelihood of achieving sustained virologic response (SVR), but that they may have fewer side effects than the current available treatments. Additionally, treatment for even type 1 HCV infection may be shorted to 24 weeks with the new medications.

Write on the board Boceprevir Telaprevir

Ask participants if they have heard about these newer medications. Explain how they work. www.ufomodel.org

Boceprevir and telaprevir In 2011, two protease inhibitors were approved for the treatment of genotype 1 HCV infection, boceprevir and telaprevir. These medications help stop HCV from replicating (making more copies of itself). These medications must be taken in combination with pegylated interferon and ribavirin. This is called triple therapy and has been shown to improve treatment success. ** **

**

These drugs are not recommended for anyone younger than 18 years old, or anyone who is infected with HIV as well as HCV. These drugs stop hormonal birth control from working (birth control pills, vaginal rings, IUDs, depoprovera). If you are being treated with protease inhibitors, you must use alternate form of birth control, such as condoms, diaphragms and spermicidal jelly.

All HCV medications, especially protease inhibitors, can cause drug resistance if not taken correctly and consistently. Drug resistance can keep you from getting cured and make you resistant to new drugs being developed.

Side-effects of HCV treatment medications

Interferon, ribavirin, boceprevir and telaprevir are currently the only medications approved for use in the treatment of HCV, and are most likely to succeed at clearing HCV from your body when used together. Unfortunately, they have lots of side effects including depression, flu-like symptoms, skin rashes, tiredness, diarrhea, upset stomach, loss of appetite, back pain, dizziness, dry mouth, taste changes and nausea. It’s possible to manage most side effects by taking care of yourself, using support systems and taking medications that help decrease their impact. Some of the side effects can be severe, so it’s important to be prepared for them and to communicate with your healthcare provider if you’re struggling to cope with their impact. UFO Model Replication Manual

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4F Implementing UFO: Education & support group Add-on Session - HCV treatment 101 Other medications to treat HCV infection are in early clinical trials, but show great promise, including some that may effectively treat HCV infection without the use of interferon and with few side effects. Question for participants

Who can describe the process of treatment?

Have one or several participants briefly describe how treating HCV works, and correctly name the possible lengths of treatment. Clarify any misconceptions. ** **

** ** **

** **

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Treatment for HCV usually involves three different medications: interferon, ribavirin and boceprevir or telaprevir. Treatment usually lasts for either 6 or 12 months, depending on the type of HCV being treated. With triple therapy, treatment duration can be shorter. Pegylated interferon is a medication that is injected under the skin once a week, usually in stomach fat.

Ribavirin is a pill that is usually taken twice a day. Boceprevir and telaprevir are pills that are taken every 8 hours. They must be taken with food. Telaprevir must be taken with a high-fat food like whole milk, ice cream or peanut butter.

Treatment involves frequent visits to your healthcare provider and lab for blood tests monitor how treatment is progressing and manage side effects.

It is very important to take medications exactly as prescribed. Taking the wrong amount or missing doses can keep you from getting cured and cause drug resistance.

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Questions for participants Who can get treatment? Can drug users get treatment?

Elicit answers from participants. Correct any misconceptions or inaccurate information. Don’t minimize the barriers to treatment access for drug users, but be sure that participants understand their options.

Most people infected with HCV can be a treatment candidate, but there are some people should not get treatment, including

**

People with renal (kidney) disease

**

People with schizophrenia, bipolar disease or severe depression who aren’t taking medicine

** **

People with severe liver disease

Pregnant women and male partners of pregnant women

In 2002, the National Institute of Health said that drug users should NOT be excluded from treatment for HCV, but that it should be between the user and medical provider to determine if treatment is the right option. Although this opened the doors to active users to get treatment, many providers are still extremely reluctant to treat someone who uses.

**

**

**

Medical providers are generally concerned that people who are using drugs cannot tolerate some of the side effects of treatment, especially those related to depression and the other psychological effects. If someone is homeless or unstable, providers worry about the additional impact treatment can have. The new triple therapy treatment requires patients to take medications on a strict, 8-hour schedule, and to take pills with food. There is also concern that an active drug user cannot adhere to the treatment regimen. If someone doesn’t receive at least 80% of their treatment, it will not be successful. That means getting injections and taking daily medication for 6 months to a year.

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4F Implementing UFO: Education & support group Add-on Session - HCV treatment 101 **

Because re-infection with HCV is possible, providers also can be reluctant to put in the time, energy and resources it takes to for HCV treatment if the patient is still engaging in activities that put them at risk for re-infection (sharing needles and injection equipment).

Research has shown that people who use occasionally have as good outcomes for HCV treatment as people who do not. However, if you use daily, most likely you won’t make it through treatment. It takes a lot of effort and responsibility to show up at weekly medical appointments, manage side effects and take medication several times a day. If you want to go through treatment but are using regularly, it is a good idea to cut down as much as possible, or stop completely before starting treatment. Remember, you will have to cut down or stop using for at least 6 months and up to a year during treatment. You can take methadone or bupe while in treatment. Question for participants

Does treatment always work?

Elicit answers from participants. Correct any misconceptions or inaccurate information.

No, unfortunately, treatment is not always successful. For people with type 1, which is the most common type of HCV in the US, treatment is successful about 50-65% of the time when interferon and ribavirin are used alone. When triple therapy is used, treatment is successful about 80% of the time. For people with type 2 and 3, treatment is successful about 70-85% of the time.

The odds might not sound good, but treatment works more often than not. When it works, you no longer have HCV. You will always test positive for HCV antibodies, but the virus will be gone. Even if you have been successfully treated for HCV, you can still get HCV again the same way you got it before. Reinfection is possible, and happens a lot. www.ufomodel.org

After successful treatment, it remains extremely important to never share needles, cookers, water, tourniquets or anything you use when injecting so that you limit your risk of exposure and reinfection. Bleaching needles does not kill HCV infection, so be sure to have cleans on you all the time. Stopping injection drug use is the only way to really reduce your risk of HCV exposure. If you’re not ready for that, do all that you can to be clean and safe while using. Question for participants

If treatment isn’t always successful, and there are a lot of side effects from the medications used to treat HCV, why should anyone get treatment? Elicit answers from participants. Correct any misconceptions or inaccurate information.

Treatment is definitely not for everyone. However, for many people it is a good option. Some people have symptoms of HCV and feel sick. They suffer from chronic fatigue, nausea and vomiting or other effects of HCV and want to get rid of it. Others are concerned about eventually getting cirrhosis and liver cancer. Some people who have stopped using drugs don’t want to have physical reminders of their past, like HCV. Even though there are a lot of side effects related to interferon and ribavirin, there are lots of ways to make it easier. Not everyone experiences the same side effects and practically no one experiences all of the side effects. Shortly after finishing treatment, every single side effect will disappear, so you can always remember that there is an end to it.

Young adult drug users who are HCVinfected but don’t have any symptoms may decide not to get treatment now. There is no right or wrong answer. But it’s important to understand that untreated HCV infection will stay in your body even without symptoms and will continue to negatively affect your liver, potentially leading to cirrhosis or liver cancer. UFO Model Replication Manual

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4F Implementing UFO: Education & support group Add-on Session - HCV treatment 101 Question for participants What can you do to prepare for treatment if you decide to do it? Give everyone in the room a chance to offer their thoughts. Make a list on the board. After the room has exhausted their thoughts on how to prepare for HCV treatment, go over any ideas below that have not been discussed.

Cut down on drug use. Although using drugs doesn’t necessarily mean that you can’t get treatment, we recommend to stop using or at least significantly cut down during treatment. Not only does drug use make side effects stronger and more difficult to manage, but it can make things like following through on clinic visits and taking your medication regularly much more difficult. Before treatment, it’s good to cut down on your drug use. Getting on methadone or bupe if you use opiates has been shown to improve treatment outcomes for IDU. Cut down or cut out alcohol use. Heavy alcohol use is contraindicated for treatment, meaning you can’t get be treated if you drink a lot. If you really want treatment and can cut down on alcohol use, you have to do this before someone will give you treatment. Control mental health. Anti-depressants have been shown to help avoid or reduce the side effects like depression, irritability and psychosis. Because these medications take some time to start to work, and to avoid these negative effects in the first place, it’s often recommended to start on an anti-depressant before treatment. This is also good practice for taking daily medication.

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Get housed. Before starting treatment, you and your healthcare provider or case manager should make arrangements for housing, at least while you’re getting treatment. If housing is not an option, another good plan is to arrange for treatment to be provided at a place that you go to a lot. A methadone clinic, for example, can be a good place to get treatment, since most people go on a daily basis to dose. This allows you to see your

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provider on a regular basis, providing a strong support system that can be lacking when one does not have a stable place to sleep.

Use non-hormonal birth control with your partner. Pregnancy isn’t allowed while women are getting treatment because the medications can cause birth defects. Protease inhibitors stop the pill, vaginal rings, hormonal IUDs and depo-provera from working. Young women and men who are sexually active should use non-hormonal contraceptives (condoms, diaphragms, spermicidal jelly, non-hormonal IUDs) while they or their partner are in treatment and for 6 months after treatment.

Go to a support group. Going to a support group is a really good idea. It can help build a community of people who might be going through the same thing or already have. It also gives you a social network of people who will have lots of ideas about how to cope during treatment. Question for participants

What does “watchful waiting” mean?

Give everyone in the room a chance to offer their thoughts.

It is up to you, your provider and other important people in your life to decide when treatment is right. If you do not start treatment, that does not mean you are doing nothing about your HCV. Watchful waiting refers to working with your healthcare provider to monitor the progression of your HCV, help keep you and your liver healthy, and help you get stabilized to potentially prepare you for treatment down the road. Watchful waiting can include

**

Going to regular doctor appointments

**

Starting anti-depressants

** **

Getting blood tests to monitor your liver once or twice a year

Working with a case manager to get stable housing

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Changing your habits to keep your liver healthy, such as **

Stop drinking alcohol or drink less ** Stop using drugs or use less ** Eat healthy meals ** Get enough sleep (1-3 am is “liver time”) The best thing you can do is be honest with yourself and your provider about what you can and can’t do. Build a relationship. Take it slow. Go to all your scheduled appointments and get as much information as you can before deciding whether to start HCV treatment. Other medications to treat HCV infection are in early clinical trials, but show great promise, including some that may effectively treat HCV infection without the use of interferon and with few side effects. If a young adult has chronic HCV infection, many clinicians may suggest that treatment in 2013 should be delayed unless there is strong clinical indication for treatment sooner rather than later. Many of these new medications will be available in the next few years. Questions for participants

Do you know anyone who has gotten treated for HCV? What did you see? Where did they get treated? Allow participants to share their own stories about what they have seen. Use their examples to remind the group of ways to manage side effects. Talk about where treatment was received, if this provider/clinic is available to others in the group and things the person did to prepare for treatment.

At the end of group, ask anyone who is interested in getting treatment to schedule a 1:1 time to discuss their individual situation and provide appropriate referrals.

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4F Implementing UFO: Education & support group Appendix - Resources and handouts Handouts ** ** ** **

CDC’s Viral Hepatitis Resource Center - www.cdc.gov/hepatitis/C/PatientEduC. htm

Department of Veterans Affairs publications - www.hepatitis.va.gov/ products/index.asp

HCV Advocate - www.hcvadvocate.org/ hepatitis/materials.asp HCV Advocate fact sheets - www.

hcvadvocate.org/hepatitis/factsheets. asp#Easy_eng – Tons of good fact

sheets to hand out to participants. In particular, we like: **

Preventing HCV in IDUs - www.

**

HCV and transgender people -

hcvadvocate.org/hepatitis/easyfacts/ IDUs.pdf www.hcvadvocate.org/hepatitis/ easyfacts/Transgender.pdf

Resources **

**

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Department of Veterans Affairs **

Good resource for info on new antiretrovirals to treat HCV - www.

**

Treatment challenges for persons in recovery - www.hepatitis.va.gov/

hepatitis.va.gov/HEPATITIS/pdf/ new-therapies-brochure.pdf

HEPATITIS/patient/treat/drugalcohol-recovery-single-page.asp

Hep C and me–for youth - www.hspace. org.au/

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4F Implementing UFO: Education & support group Appendix - Resources and handouts After only one year of injecting, 20% of young adults will become hep C positive

is infectious than HIV

HCV Prevalance

Receptive Needle Sharing 43% 40% 54%

45% 34%

YOU

can

Drug Treatment

Unstable Housing

protect me

Overdose Experienced

DID YOU KNOW THAT IN THE US...

30% 81% 50%

63% 80%

Incarcerated

22% 33%

4X MORE PEOPLE HAVE HCV THAN HIV 1.1M 1.4M 5.0M 10X MORE UNDIAGNOSED HCV INFECTIONS THAN HIV

85% 33% 74%

San Francisco Suburban Chicago New York City, Chicago, Baltimore, Seattle, Los Angeles

233,000 910,000 3.75M MORE PEOPLE DIE OF HCV THAN HIV 12,734 1,815 15,106

HIV

HBV

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A hep C intervention for young adults

The UFO model is a multi-level, easily adaptable education and prevention intervention for young adults at risk for hepatitis and HIV. Our replication manual and TA resources are available for free on our website:

ufomodel.org

HCV

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BIRTH

Any infection that may have happened in the last six months may not show up in this test.

SIX MONTHS AGO

TODAY

UNDERSTANDING THE HEPATITIS C WINDOW PERIOD

This test will be TOTALLY accurate for everything That has happened from the time you were born until six months ago.

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Quick ‘n’ Dirty

HCV education & support group Offer the group regularly Ideally, the group should be offered on a regular basis, perhaps running the group 3 or 4 times per year. Participants may complete all sessions in one group, or may make up missed sessions during the next scheduled group. Participants are not required to complete all sessions, and may wish to return to certain sessions for boosters.

Be flexible

If people are not willing to talk about the topic but are willing to talk about something else, go with it. Eventually, it may be possible to use the momentum of that conversation to make connections back to the original topic.

Go over words and terms repeatedly

HCV is a complicated disease and it is complicated to explain. Whenever you use terms in the Glossary that may not be familiar to the participants, write it on the board and define it each and every time.

Be prepared

Facilitators should read and understand the information in the module before the group, watch the video, and then facilitate the group using the discussion questions.

Don’t be afraid to say ‘I don’t know’

Education groups are dynamic and people often come up with questions that you just don’t know the right answer to. Facilitators may feel pressure to have all the answers; however, it can be far more harmful to hazard an uneducated guess.

Offer needed follow-up

If a participant is visibly upset or asks for services, offer referrals after the group ends. Use your local Resource Guide. Debrief with co-facilitator(s) once all participants have left.

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Adapting, measuring, tracking

5


5 Adapting, measuring, tracking Adapting UFO to fit your community “San Francisco is soooo different from where I live, how could we possibly use this model program?” You may have said something like that when you first picked up this manual. The truth is, young adult injectors will be different from town to town and situation to situation. But a lot of the underlying themes of the UFO Model will hold true across populations. While some of the information in here may not be helpful for you, a whole lot of it will be quite useful. Everyone should adapt programs to fit their community, but there are some guidelines for how to best do that. “Adaptations should be successful if changes made are consistent with the intervention and culturally relevant to the population with whom the work is to be done” [CDC]

1. Learn about what your community needs. You can use the Needs Assessment in Part 3 – Preparing for UFO to get a sense of what’s going on your community. This is sometimes referred to as formative evaluation. Make sure that any changes you make are based on information collected during the needs assessment and not based on assumptions you have about young adult IDUs.

2. Keep the core elements. The core elements of the UFO model are what have been determined to make the model work. Parts of the model can be changed, added to, or deleted, as long as the core elements remain intact. These core elements were developed based on 14 years of service and research with young adult IDUs. 3. Decide which components need adaptation. During your Needs Assessment you probably discovered that parts of the UFO model may not be relevant in your community. Start with a plan for what you will keep and what you will adapt, write down your changes and have a written protocol for what you are doing. 158

4. Make adjustments along the way. If you change something and it doesn’t

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work, then go back and tweak it. This manual is not written in stone. Mistakes are only mistakes if we don’t learn from them.

Example: The UFO model works with young adult IDU who are homeless, travelling and marginally housed. You may have discovered that your young adult IDU are for the most part living at home and their parents don’t know that they’re injecting. Part 4A - Outreach emphasizes going out on the street to engage youth. Since this won’t work for your population, how will you adapt this? What kind of outreach will engage these young adults (internet chat rooms? Online pharmacies?) What’s the best way to let them know about your services? What do they think is engaging and important to keep them safe?

Though you may adapt the outreach strategies, the core elements are still crucial. You want to maintain a youth-centered focus so that young adults feel safe with you. You need to show your face (virtual and real) so that young adults get to know you and feel you are reliable. Seek out other agencies and opinion leaders to collaborate and share resources to give the young adults as much support as the community can provide. And always remember to use a harm reduction approach and maintain cultural competency by hiring a diverse staff, providing what your participants want and need, and being non-judgmental about drug use and injecting.

Remember, be creative! The UFO model is not a recipe meant to be followed exactly, but more like a soup that starts with a delicious and nutritious (and evidencebased) broth to which you can add your own ingredients and knowledge created in your agency and your community.

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5 Adapting, measuring, tracking What can I adapt in the UFO Model? Outreach and education Adaptable aspects include: ** ** **

Location: where outreach occurs (see example above)

Materials distributed during outreach Program flyers

Non-adaptable aspects include: **

** **

Safety issues: partner up, never conduct outreach alone, carry a phone Collaboration with other outreach workers and agencies serving the same participants Confidentiality of clients

Drop-in center

Adaptable aspects include: ** **

Location: you may not have your own site, but share space with another agency, local soup kitchen, etc.

On-site services: you may not have a healthcare practitioner on site, or you may add a case worker, for example.

Non-adaptable aspects include: **

Confidentiality of clients

**

Reliability: services should be available as many hours as possible and at the same time every week so that young adults can count on your presence

** **

** **

Non-judgmental attitude

Location easily accessible to young adult IDU

Youth-friendly: If young adults want to bring in their girlfriends/boyfriends, pets, cell phones, etc, make sure to welcome them as they are.

Referrals should always be available.

Education and support group Adaptable aspects include: **

Videos: Changing videos for videos with similar content

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**

Data/statistics: update or personalize statistics for your community

**

Timing: Although this is an 8-week group format, you may want to conduct 4 sessions a week for two weeks (during school vacation, for example). You may also choose to only present the first 4 sessions.

**

Customizing role plays (names, examples, etc)

Non-adaptable aspects include: **

Education content of sessions

**

Non-judgmental attitude

** ** **

Order of sessions

Inclusion of safer shooting and safer sex information Harm reduction approach

Counseling and testing for HCV and HAV/HBV vaccines Adaptable aspects include: **

Location: you may not be able to conduct HCV testing on-site. However, you must include HCV testing in your program. If you partner with the health department or other agency that tests, be sure to escort your clients there, or have visited the test site to make sure it is youth-friendly, or schedule your drop-in right before testing so clients can go directly there. UFO Model Replication Manual

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5 Adapting, measuring, tracking Non-adaptable aspects include:

Youth-centered referrals

**

Access to HCV tests

**

Education on the different tests and what they show

Again, you can’t adapt this. Young adult IDU often have many and varied needs, and you won’t be able to provide everything they need. You need to do the legwork of visiting agencies and seeing the surroundings, talking to staff to educate them or see how they treat young adult IDU, and knowing exactly where they are, when they’re open and what appointments are available. If you send your clients to a shelter that tells them they’re too young (or old) to stay, you will have lost credibility in their eyes.

** ** **

Offering HAV/HBV vaccines

Reminders for clients to come and receive their results Confidentiality of clients

Syringe access

Nope, you can’t adapt this. Don’t do it. Syringe access is crucial to the success of any HCV prevention program. If your program cannot provide sterile syringes and drug preparation equipment, you need to partner with a group that can. See Part 4D – Syringe access for more information.

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Use the chart on the following page to strategize what parts of the UFO Model you may want to adapt.

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5 Adapting, measuring, tracking Adaptation Quickâ&#x20AC;&#x2122;nâ&#x20AC;&#x2122;Dirty Component

Outreach and education Drop-in center Education and support group Counseling and testing for HCV Syringe access Youth-centered referrals

Why do you want to adapt it? How is your population different?

What will you change?

Does it fit with the Core Elements?

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5 Adapting, measuring, tracking Measuring Success

“Don’t take it personally if they don’t meet their goals. I sit down with them and have them give me one day goals, one week goals, two week, two year goals. Even if they never accomplish that, they have something that I wrote down with them and they’re looking at. Will they accomplish their goals? Probably not. But I’m not sad if they don’t accomplish that one little goal. At least they’re going in a direction. You want them to move forward, not backwards. Don’t let them take it personally if they don’t do their goals, either.” –UFO counselor

The UFO Intervention Replication Manual does not include evaluation materials because measuring success of the program is complicated. The ideal measure would be a decrease in HCV infections among young adult IDU; however, surveillance and data collection on HCV has been limited to nonexistent across the US. In San Francisco, the first health department report on HCV infection was released in October 2010 for 2009 data. Likewise, the CDC reported on non-acute HCV infection for the first time for 2009, but that only included 5 states and 2 cities across the US.

So how do we measure success? Each agency implementing the UFO Model needs to decide what specific outcomes they want for their program. We need to remember that we are working with a disadvantaged population that may be dealing with multiple health issues besides HCV: addiction, homelessness, violence, trauma, mental illness, to name a few. And to top it all off, they’re young adults! All young adults are more likely to experiment, take risks and believe themselves to be invulnerable. The good news is that because they are young, our participants have a lot of resilience and strength to face these challenges. Because success can be a variable and highly personal term, we asked one of the longtime UFO staff in San Francisco to give her perspective on measuring success when working with young adult IDU.

What success means to me Alice Asher RN – Clinical Nurse Specialist for the UFO program in San Francisco

Whenever I tell someone what I do for a living, I generally get one of two questions: ‘Do you like it?” or “Doesn’t it make you sad?” I don’t even have to think about my answer. I don’t like what I do. I love it. And it rarely makes me sad.

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It took me a while to figure out why people ask those questions. The easy assumption is that most people would not choose to work with active drug users. That is, I’m sure, part of it. But after many years of doing this and being faced with that question

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countless times, I’ve come to understand that it’s far more nuanced than that. In a large part, job satisfaction derives from the outcomes we see and the success we have in doing what we do. When someone asks me incredulously if I like my job, they are making the assumption that because my clients continue to use drugs and often contract HCV, I must get frustrated and feel unsuccessful. Its not that I don’t get sad. Individual circumstances, histories and personal stories can be devastating. The circumstances in which some people exist can be disturbing and scary. Since I have spent my entire professional life working as a counselor and care provider in some form or another, I do take such experiences in stride and I am accustomed to this. But really, that accounts for a very small portion of my work experiences. For me, what makes up my work experience is so much more positive than that. I don’t like that my clients’ realities can be so uncomfortable and painful. I don’t like that most have experienced a lifetime of pain, violence and abandonment. I don’t like that addiction is such a gripping, devastating disease. But I cannot change those things.

What I do love about my work is that I am there. I, and everyone at UFO, am a stable presence in these chaotic lives. We genuinely care about our work and about our clients. We have the power to touch people who often are made invisible by society. We are giving them information, education and services tailored to them. We are there to answer questions that maybe no one else has ever answered honestly and clearly. We care and we are there. We provide a place for people to be safe and to get a little safer. And we do it all without expecting our clients to change.

If you do this work and expect to significantly change every client’s circumstances, this will be a struggle. Harm reduction isn’t just an approach to caring for an active drug user. It is a philosophical view of drug use and of the lived experience of drug dependence. While I may regard my greatest ‘success’ stories as the kids who do get clean and off the streets, I see success in my work every day. www.ufomodel.org


5 Adapting, measuring, tracking In this context, success is defined:

When someone walks in the door. Most young adult IDU avoid institutions, authority and health care. Simply the fact that they came in is amazing. It’s not unusual for someone to cry the first time they come to UFO. Few of our clients have experienced the care and resources we have to offer. It can be overwhelming to them. When someone comes back. That they made it in the first time is amazing. That they came back is incredible. We know that needs were met in the first visit and we can continue to do so in subsequent visits. A lot of times they’ll bring a friend with them when they return. This warms my heart.

When someone learns something about HCV that they never knew. Sometimes this information comes a little late – the client already has HCV. But, as I always remind them, someone gave them the virus. Transmission can stop here. Without a vaccine, knowledge is our only tool to strive for safety. In this context more than so many others, knowledge truly is power

them on site, we have to refer out. Our clients may need to see a doctor, get mental health care or be ready to access drug treament. But a lot can happen overnight. Motivations can change and the reality of actually accessing a new place is barrier.

I don’t evaluate success by seeing that my client got clean or had their healthcare needs met. While that is my ultimate goal, I take pride in the baby steps. To me, simply that they asked for help and took steps to follow through is pretty awesome.

“You have to have a team of people that really all have a similar want—I’m not gonna say goals or anything because their goals are personal—I’m saying more of a common want to see these type of people get better, not just where they live but everywhere.” –UFO participant

When someone follows through on a referral. Walking into a strange place for the first time is scary, especially for young adult IDU who have experienced stigma and discrimination. When someone follows through on the referral I provided, I was successful. This is particularly important to remember. When many of our clients are at drop-in, they feel comfortable telling us their needs. When we can’t meet

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5 Adapting, measuring, tracking Tracking and retention The participants we see in San Francisco are mostly homeless or marginally housed and may lead somewhat chaotic and change-filled lives. For that reason we pay particular attention to tracking and retention for our participants. Tracking refers to making sure you have information about each young adult IDU to document their participation in UFO. Retention refers to “That’s what’s cool about helping make sure that participants return the people who work at to your program, either for a specific UFO. They got to know us. purpose (test results, vaccinations, groups, Most people working with follow-up on referrals) or simply to hang substance abusers don’t want out, build trust and help them stay safe. to take the risk of making Tracking a friend, or caring about someone that might be a total turd, or might steal from In San Francisco, everyone who walks into them or something like that. the UFO drop-in signs in at the front desk But these people here didn’t with their name (or nickname) and date of give a crap about any of that, birth. If they want to engage further with any of our services (testing, counseling, they just really cared about healthcare, vaccinations), we ask them to us. For me, it was a new fill out a pretty comprehensive contact thing.” –UFO participant form (see Appendix). We also ask for a photograph to help us better identify them later. Most participants agree to have their picture taken. This is likely due to UFO’s excellent reputation on the street. Be sure to note when a participant declines to be photographed, so you don’t ask them again. If you’re just starting a program, it might be better to wait until you’ve built a reputation and gained trust in the community before asking for photos.

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You’ll see that the contact form is fairly comprehensive. We have learned that staff should fill out the contact form, asking questions of the participants. This will generally get you better contact information because you can probe for more information. Also, some participants may have difficulty writing or filling out forms. Ask for phone, e-mail, websites, phones of friends or family, names of caseworkers, locations where they hang out. Always ask for time of day as well: participants may hanging out downtown during the day, but in another location at night. Make it clear that it needs to be OK with the partici-

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pants for you to contact other people, and ask if it’s OK to mention UFO if you do contact them.

If a participant has problems answering the form or doesn’t know what to say, ask them, “If you were one of our outreach workers, where would you go to find you?” We sometimes provide a map of the downtown area and ask participants to mark or show us where they hang out. You may be thinking that this level of information gathering is too intrusive or not respectful of participants. You never know until you try. If participants are consistently balking at filling out the form, you may need to adjust it. We have found that young adults are more than happy to give us this information. It makes them feel like we care about them, and it’s reassuring that someone knows where they are and how to find them.

The UFO Model uses this comprehensive method of tracking because our participants are highly mobile and marginally housed. They may not have their own phone or a fixed address. The young adult IDU in your community may be different. If your participants are housed or employed and relatively stable, you may not need to collect all this contact information. However, in those cases, it may be more important to ensure participants that the data is confidential, and be sure to get permission to leave a message or call someone at work. Most importantly, if you don’t get good contact information, you may not be able to find a participant. Think how you’ll feel if one of your participants tests positive for HCV and you can’t find them to come in for their test results. Or if a participant tells you they are in a bad place or on a binge, and they don’t show up at the next drop-in and you can’t find them again.

Confidentiality

Confidentiality is extremely important when it comes to gathering and storing contact information from your participants. For more detail on confidentiality issues, see Part 3 – Preparing for UFO.

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5 Adapting, measuring, tracking Store contact forms in a secure location. Any paper forms should be kept under lock and key. This could simply be a filing cabinet or desk that locks, or a special locking box. All electronic data should be kept on a secured computer or server and protected by password. Only select staff should have access to the information, such as outreach workers and counselors. Remember, if your agency uses laptops or other portable computer devices, these should be registered with your agency, encrypted, secured with a password and locked up when not in use. Staff should never store any information about participants on their personal phones, computers, etc. Get permission. Make sure the participant knows that if they list a person on their form, you might contact them. Ask if you can mention UFO when you contact them. Only use information you collect. Your staff might know things about the participants that they did not tell you. You may see them working at a store, or at an SEP, or you might run into them at other venues. If a participant did not list those places on their contact form, you cannot go or call there to contact them. Only use whatever contacts the participant has agreed to give you.

Treat everyone the same. Even though it’s hard to see someone that you know is HCV+ and hasn’t returned for their test result, you cannot treat them differently during outreach or follow-up. For instance, if you approach a group of your participants hanging out, you can’t say to one of them, “Dude, you REALLY need to come back to see us, it’s super important.”

** **

Social networking sites (Facebook, MySpace) Snail mail

Use any and all of these methods to contact folks. Use the participant’s contact forms to get mailing addresses, phone numbers of friends and family, e-mail, and contacts at local service agencies in order to remind them they are due for appointments. This may be a long process, so it’s important to schedule enough time to follow through on all possible contacts.

Very rarely does a UFO participant complain about us sending them reminders. However, if your participants already keep a schedule on their phones or computers, or return to your program on a regular basis, it may not be necessary to contact them multiple times. It’s a thin line between being resourceful and bugging someone. Your participants will let you know if you’re crossing the line.

Street-based outreach to specific participants takes place in the week before their next appointment. The shorter the time between outreach and the appointment will help participants return. In San Francisco, we schedule outreach on the morning before our drop-in. Again, we rely on the client contact form to learn about where they hang out, work and live. Occasionally you might want to make an individual plan for a participant who has not returned (typically someone who has tested HCV+). In this case, you may

Retention

UFO retention activities are office-based and street-based. We generally start with office-based outreach the day before dropin or the participant’s appointment (test results, vaccinations, groups). Office-based retention relies on ** ** **

Phone calls E-mails Texts

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5 Adapting, measuring, tracking visit the hotel or campsite where they are living, knock on their door, leave a note slipped under the door or in a mailbox. You may leave a note at other agencies they may visit, if there is a message board, or ask staff at other agencies to let the participant know you wanted to see them (only if they have given that contact information and without disclosing the reason, of course).

**

Hard-to-find participants

Every now and then, it may be too difficult to find a participant. You may have followed up with all the contact information through every possible means and still can’t reach someone. In this case, there are a few other places to check. Some institutions may be able or willing to give you information and others may not. It depends on local policies, your relationship with the institution, or sometimes just if someone who answers the phone is having a bad day. Persistence helps.

When calling one of these places, it’s best to start with a formal introduction: “Hello, my name is _____ and I work for ________ (if you’re affiliated with a university or health department that sounds official, use that as well). I’m trying to locate a participant in our program. Can you tell me if they are here (in custody, enrolled, etc)?” **

Local jail. Many young adults who use drugs have been incarcerated at least once in their life, and may cycle in and out of jail. Sometimes, another participant will tell you that someone is in jail. Develop a good relationship with your local jail. If a participant who is incarcerated needs a follow-up vaccine, it may be possible for the health clinic at the jail to deliver that.

Again, it depends on the jail and the community how open they may be to talking to you. They may need the person’s name and birth date to identify

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**

**

**

them. You may not have the participant’s real name, or it may not match with what the jail has on record.

Drug treatment. Again, many participants have a history of drug treatment. You can check local residential treatment centers to see if a participant has checked in. Methadone clinics also may be a good place to find participants. At UFO in San Francisco, we have been collaborating with the same treatment programs for many years and have a good relationship, so it is easier to get info on a participant. Occasionally, a participant will give you the name of their treatment center on their contact form. Hospital. You may hear from another participant that someone is in the hospital. Not only is it good to know if one of your participants is in the hospital, it also allows you to go visit them. Sometimes hospitals will tell you a participant’s room number; sometimes you need to be immediate family to find out. Family. At UFO in San Francisco, only a small percentage of participants give us contact information for their parents or family members. Your participants may live at home and have that as their main contact, and so won’t be a method of last resort for finding them. When calling family, be especially aware of confidentiality issues. A parent may grill you about their child to find out more about what they’re up to.

Morgue. Usually if a participant dies, the other young adults will know about it. As a last resort, you can always check with the morgue. In some areas, the morgue will be able to tell you; in other areas, it may not be allowed.

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5 Appendix 1 - UFO contact form

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Quick ‘n’ Dirty

Adapting, measuring, tracking Adapt the UFO Model if you need to Everyone should adapt programs to fit their community, but there are some guidelines for how to best do that. ** Learn about what your community needs

** Keep the core elements

** Decide which components need adaptation

** Make adjustments along the way

Figure out measures of success for your program The ideal measure would be a decrease in HCV infections among young adult IDU; however, surveillance and data collection on HCV has been limited to nonexistent across the US. Because success can be a variable and highly personal term, we asked one of the longtime UFO staff to give her perspective on measuring success when working with young adult IDU. ** When someone walks in the door

** When someone comes back

** When someone learns something about HCV that they never knew

** When someone follows through on a referral

Keep track of your participants

The participants we see at UFO in San Francisco are mostly homeless or marginally housed and may lead somewhat chaotic and change-filled lives. Even young adults living at home can be frustratingly hard to contact. For that reason, pay particular attention to tracking and retention for participants to make sure they return to your program, either for a specific purpose (test results, vaccinations, groups, follow-up on referrals) or simply to hang out, build trust and help them stay safe.

“Don’t take it personally if they don’t meet their goals. I sit down with them and have them give me one day goals, one week goals, two week, two year goals. Even if they never accomplish that, they have something that I wrote down with them and they’re looking at. Will they accomplish their goals? Probably not. But I’m not sad if they don’t accomplish that one little goal. At least they’re going in a direction. You want them to move forward, not backwards. Don’t let them take it personally if they don’t do their goals, either.” –UFO counselor

** Contact form. Be thorough in asking for contact information. Always ask what time of day they may be at a certain location.

** Confidentiality. Use extreme care in storing contact info in a locked and secure area or device. Only use contacts that the participant has given you and agreed to let you contact.

** Hard-to-find participants. There are several places you can check, such as jail, drug treatment centers, hospitals, family members and lastly, the morgue. www.ufomodel.org

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