Tools for Access Curriculum: Young People

Tools for Access Workshop Curriculum

Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

The following curriculum draws on surveillance data collated by the Public Health Agency of Canada, peer-reviewed academic literature, grey literature, narrative accounts and information based on consultations with key stakeholders including community-based service providers and people living with HIV and Viral Hepatitis co-infection.

The purpose of this curriculum is to provide practical guidance for addressing barriers to treatment access among young people living with HIV or co-infected with HIV and Viral Hepatitis. Treatment access is considered in its holistic form, encompassing the range of care and support needs required to achieve health and human rights for young people living with HIV in Canada.

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Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

Contents Contents................................................................................................................................................................................................ 3 1. Overview of Young People Living with HIV and Viral Hepatitis co-infection.............................................................. 4 Epidemiology....................................................................................................................................................................................................4 2. Structural, Social and Personal Barriers to Treatment, Care and Support................................................................... 5 Indigenous Young People Living with HIV: Colonization and Impact...................................................................................5 Legislation and Service Access.................................................................................................................................................................6 Early Childhood, Sexuality and Youth Culture...................................................................................................................................7 3. Impacts of HIV Stigma and Discrimination on Access to Treatment, Care, and Support....................................... 8 Intersections of Stigma.................................................................................................................................................................................8 Levels of Stigma...............................................................................................................................................................................................9 4. Barriers to Holistic Treatment Access....................................................................................................................................10 5. Take Action: Tools, Solutions and Alternatives.....................................................................................................................11 Works Cited........................................................................................................................................................................................12

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Overview of Young People Living with HIV and Viral Hepatitis Co-infection

This first section provides general background information on demographic trends in HIV and co-infection among young people in Canada. Information is taken primarily from regional and local surveillance data collated and published by the Public Health Agency of Canada. Factors considered include sex and gender, ethnic and cultural background, age, modes of transmission, and Hepatitis, HIV and AIDS prevalence.

Epidemiology • I t is estimated that young people between the ages of 15 and 26 years of age account for 26.5% of all HIV positive test reports since 1979 (when reporting began).

• Y oung males accounted for more than 85% of yearly AIDS reports among people aged 15-29, from 19831995. However, the gap between young women and men diagnosed in Canada has decreased. In 2007, the proportion of AIDS cases among young people living with HIV was higher among young females for the first time. In 2008, young males accounted for 66.7% of AIDS cases and young females accounted for 33.3% of AIDS cases.1 • Y oung people in Canada demonstrate concerning gaps in knowledge of HIV, including HIV transmission, safer sex practices, health consequences and available treatment. A recent national attitudinal survey found low knowledge of HIV among young people, with a significant number believing HIV can be cured.2 • S everal targeted studies in Canada have demonstrated that young people who are street-involved – who use injection drugs, who trade sexual services for basic needs, who were victims of child sexual abuse and/or who are homeless or have unstable housing access – are at heightened risk of infection with HIV and Viral Hepatitis C.3

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• T he number of young people infected with HIV who identify as having white ethnicity is decreasing over time – from 51.0% in 1998 to 33.5% in 2008.

• Y oung people from Indigenous communities in Canada are highly vulnerable to HIV and Hepatitis C through sharing injection drug equipment and through sexual intercourse. In comparison to all young people testing positive for HIV, the proportion of positive tests among Indigenous young people has increased from 28.8% in 1998 to 40.9% in 2008.

This is a considerable level of vulnerability given that Indigenous people account for less than 4% of the total Canadian population.

• B lack, African and Caribbean young people are disproportionally affected by HIV when compared to young people of the general Canadian population.

Young people from countries where HIV is endemic account for a substantial proportion of HIV and AIDS cases at the national level. Black young people living in Canada are overrepresented in national surveillance reports.

• T here is some evidence that young foreign-born men who have sex with men have an elevated risk of HIV infection compared to young men who have sex with men born in Canada4 due to riskier sexual practices. Qualitative evidence on health behaviours provided by a sample of young Black men who have sex with men in Toronto suggests that this population is highly affected by HIV.5

(Public Health Agency of Canada 2010C) (EKOS Research Associates 2012) (Spittal 2007) (Ontario HIV/AIDS Treatment Network 2012) (Omorodion 2007) (C. A. George 2007) (C. H. George 2008)

Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

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Structural, Social and Personal Treatment Access Barriers

In this section, we explore the specific structural, social, and personal barriers preventing young people who are living with HIV and/or Viral Hepatitis co-infection from accessing treatment, care and support.

Indigenous Young People Living with HIV: Colonization and Impacts • T here is increasing global recognition that the heightened vulnerability of Indigenous people to HIV and AIDS is the result of the historical impacts of colonization.6 In Canada, legislation segregated and geographically isolated many Indigenous communities through the Indian Act, instituting reserve housing, federal jurisdiction over reserve health care, as well as the former residential school system.7 • R esidential schooling separated thousands of Indigenous children from their parents, thereby denying them parental care and guidance. Physical, verbal and sexual abuse was prevalent in the residential school system, provoking an inheritance of neglect and abuse patterns from one generation to another. This is often referred to as the intergenerational impacts of colonization, which in part explains the vulnerability of Indigenous young people to HIV risks today, including drug use, sexual violence, abusive relationships, commercial sex work, poverty and homelessness.8 • T oday, Indigenous young people are overrepresented in positive HIV and Viral Hepatitis test reports, as well as over represented in AIDS-related morbidity and mortality. Indigenous young people who are living with HIV are more likely than other Canadian young people living with HIV to have poorer health and treatment outcomes, as well as to be co-infected with Hepatitis C.9 • G eographic isolation of Indigenous communities, including communities in rural and remote locations of Canada, is a primary barrier for many young Indig-

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enous people who are living with HIV. Health care in these locations may not be adequate to address HIV or Viral Hepatitis co-infection. Services available often lack confidentiality and compel many young people to hide their HIV status from their community health provider to avoid potential “outing” to their community.

• I nadequacies in the quality of health care in some reserve and remote communities often leads young people living with HIV to leave their home communities in favor of migrating to urban centres where they can access more specialized services. This can isolate young Indigenous people from the essential social supports of family and loved ones. The urban living environment can contribute to feelings of isolation experienced by young people and further contribute to poor health outcomes.

• C olonization has also been linked to homophobia among indigenous populations as well as Caribbean and African communities and is understood to influence vulnerability to HIV, as well as to create socially-based barriers to treatment, care and support for people living with HIV in these communities.10 Specifically, norms around gender and sexuality imposed on populations under colonization, endowed disproportionate power over others to heterosexual men in society. These norms remain entrenched in cultural belief systems and compel girls and young women to avoid health services for fear of being seen as sexually active. Entrenched homophobia causes many young people living with HIV to avoid accessing services for fear of being identified as gay or lesbian by someone they know.11

(UNAIDS 2010) (Canadian Aboriginal AIDS Network 2009) (Yang 2011) (Public Health Agency of Canada 2009A) (Interagency Coalition on AIDS and Development 2011) (Public Health Agency of Canada 2009C) (Human Rights Watch 2009) (Interagency Coalition on AIDS and Development 2011) (Public Health Agency of Canada 2009C)

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Legislation and Service Access • M any challenges to accessible and affordable treatment, care and support for young people living with HIV and Viral Hepatitis co-infection stem from structural barriers based in laws and legislation governing health service delivery, including financial coverage for prescribed antiretroviral medications and associated treatments and supplements.

with HIV who use drugs and who exchange sexual services for needs such as housing, food, protection, drug access and other resources. Limited access to harm reduction resources limits the potential of treatment success by denying the resources and services young people need to support adherence and health management.

• A ccess to treatment, care, and support for young people who are new to Canada and living with HIV can be affected by mandatory HIV screening of all immigration applicants to Canada. It has been argued that the Immigration Medical Exam, which includes HIV testing, has generated a false perception that there is less risk of HIV infection in Canada, leading to increased risk taking behaviours among young newcomers.12

• P unitive laws against drug use and commercial sex render young people living with HIV who engage in these activities highly vulnerable to involvement with the criminal justice system. Young people who are incarcerated in adult and young offender institutions are vulnerable to treatment interruptions and denial of treatment. They also face challenges accessing treatment for co-infection (i.e. Hepatitis C), along with barriers to reproductive health care services, harm reduction resources and social social support.

• A ccess to affordable housing is a critical challenge to health management for young people living with HIV. Limited resources for affordable housing, as well as age-related discrimination against young people in the housing market, is a critical barrier to safe and secure housing required for successful treatment experience and overall good health.13 • A ccess to health services can be challenging for young people living with HIV and co-infected with Viral Hepatitis. Responsibilities of maintaining regular appointments and adhering to daily treatment regimens may not be compatible with the transient and sometimes volatile lifestyles of many young people, especially those who are marginalized and experiencing multiple health barriers.

• Y oung people living with HIV may experience limited access to harm reduction resources, including methadone treatments, new/unused injection and inhalation equipment, and safer sex equipment like condoms. These services are essential in reducing poor health outcomes among young people living

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• Y oung people have reported feeling they have very little choice in their treatment options and not enough knowledge or readiness to make treatment decisions. Young people may misunderstand treatment and suspect treatment effectiveness. As a result, young people may begin treatment before they are prepared to do so, which can lead to treatment interruptions.14 • B arriers in health service delivery make the transition between pediatric and adult HIV care challenging. The Canadian reality is that many of HIV-positive adolescents are ‘lost-to-follow-up’ on referral as a result of treatment access barriers and adherence problems. Consequently, there are many reports of HIV-positive adolescents developing resistances and having increased viral loads/decreased CD4 counts.15

(Omorodion 2007) (Dale DeMatteo 1999) (Ontario HIV/AIDS Treatment Network 2012) (Veinot 2006) (Brophy, 2012)

Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

Early Childhood, Sexuality and Youth Culture • T raumatic childhood experiences influence the health status and quality of life of young people living with HIV. Early childhood sexual abuse in children predicts vulnerability to poor mental health outcomes, drug use and trading sex for basic needs.16 With the exception of research on child sexual abuse and HIV, there is very little peer-reviewed evidence available on childhood experiences predicting mortality and morbidity among people living with HIV. • T raumatic childhood experiences can lead to depression and mental health challenges among adults. Young adults who have experienced trauma in childhood often have difficulty coping with life’s challenges and are vulnerable to drug use and dependent and abusive relationships. Chaotic drug use can limit the ability of people to adhere to recommended treatment.

16 (Spittal 2007) 17 (Public Health Agency of Canada 2011) 18 (Public Health Agency of Canada 2011)

• F or young people living with HIV, early childhood experiences influence approaches to responding to HIV,17 especially regarding sexual health and sexual identity. As mentioned, early childhood sexual abuse can lead to serious sexual health consequences for adults later in life, especially in women and transgender women. Early childhood exposure to homophobia can impact the mental health of people later in life. For young people living with HIV, early childhood experiences influence approaches to responding to HIV.18 • Y oung people are often heavily influenced by their social environments and peer networks. Fear of social disruption can isolate young people from their peers and social networks. In turn, this can cause young people living with HIV to be vulnerable to relationships characterized by power and abuse.

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Impacts of HIV Stigma and Discrimination on Access to Treatment, Care, and Support

HIV-related stigma and discrimination is at the root of many barriers to treatment, care and support for people living with HIV, as many people living with HIV face severe discrimination due to stigma. This section of the curriculum provides an overview of stigma and discrimination specific to young people. Stigma and discrimination permeates service provision, criminal legislation, employment, housing and service access in Canada.

Stigma, and associated discrimination, of HIV and Viral Hepatitis intersects with stigma and discrimination against drug use, commercial sex work, race and culture, mental health, homelessness, unstable housing, and sexual orientation. The diagram below depicts overlapping sources of stigma that affect young people living with HIV and Viral Hepatitis co-infection

Intersections of Stigma homelessness and unstable housing

involvment in commercial sex

mental health

race and culture

sexual preference

HIV and HIV/Hepatitis C Co-infection

substance use

“HIV-related stigma refers to the negative beliefs, feelings and attitudes towards people living with HIV and/or associated with HIV. Thus, HIV-related stigma may affect those suspected of being infected with HIV; those who are related to someone living with HIV; or those most at risk of HIV infection, such as people who inject drugs, sex workers, men who have sex with men and transgender people.”

“HIV-related discrimination refers to the unfair and unjust treatment (act or omission) of an individual based on his or her real or perceived HIV status. Though HIV-related stigma often leads to discrimination, it is important to note that even if a person feels stigma towards another, s/he can decide not to act in a way that is unfair or discriminatory. Conversely, a person may discriminate against another without personally holding stigmatising beliefs, for example, where discrimination is mandated by law.”

(UNAIDS, 2010)

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Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

Stigma and discrimination against HIV affects access to treatment, care and support for young people with HIV in the following ways: • P eople may hide their HIV and/or Hepatitis infection, preventing themselves from obtaining general health information from providers to support good decision-making.

• Y oung people living with HIV are often excluded from existing peer networks and sources of emotional support. These supportive networks are necessary to successfully manage HIV and Viral Hepatitis.

• D epression, social isolation and exclusion often impacts mental health and wellness of young people with HIV, inhibiting their abilities to pro-actively address their health, such as maintaining medical appointments, eating well and managing adherence and treatment side effects.

• Y oung people may not disclose their status to providers and family, peer or community-level supports if disclosing their status may also mean coming out as gay, lesbian or bisexual.

• I nsensitivity, ignorance, prejudice, as well as outright discrimination by health providers generates mistrust and can lead to avoidance of health services by young people.

• S tigma fuels opposition to funding of health services, including harm reduction services to help young people living with HIV who use drugs to manage their illness, treatment complications and personal life circumstances.

• S tigma and discrimination contributes to the structural barriers that isolate and exclude young people living with HIV from participating in the development of research, policy and programs designed for them.

• P unitive laws against drug use, sex work and HIV send young people to prison and juvenile detention centres, where they may experience treatment interruptions and are often unable to access specialized HIV and co-infection services.

Levels of Stigma19 Organizational

Community/Social

Intrapersonal

Individual

HIV-related Stigma

MACRO MESO MICRO

19 Adapted from Logie C et al, 2011

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Barriers to Holistic Treatment Access

The following are barriers to treatment access, including social, structural and personal barriers. These prevent young people with HIV or Viral Hepatitis co-infection from accessing the range of treatment, care and supports required to achieve the best treatment experience possible.

• M isinformation and scepticism regarding treatment effectiveness among young people in Canada is one factor causing avoidance of treatment and related support services.

• C haotic drug use linked to coping with traumatic childhood experiences further limits the potential successfulness of treatment, as well as the overall health of young people living with HIV.

• A ge-related discrimination can exist in the delivery of health and social services. People under the age of 18 are often denied housing and employment benefits, and may be denied confidentiality in service provision. Young people also face age-related barriers to accessing affordable and confidential legal advice.

• T here is limited availability of affordable and convenient youth-specific services, including youth supports and networking spaces, psycho-social supports specific to young peoples’ realities, and a lack of youth-specific opportunities to contribute to policy and program development for HIV treatment, care and support.

• R acial and culturally-rooted discrimination of Indigenous young people by service providers and society at large fosters mistrust of service providers as figures of authority by young people. Ongoing colonial violence perpetuated by governments in Canada can lead Indigenous young people to avoid services and supports all together.

• A ge-related barriers to housing access negatively impacts treatment adherence and side effects management for young people without access to stable and secure housing. The mental health impact of inadequate housing further affects the ability of young people to manage health and adhere to prescribed medications.

• R acism and cultural prejudice against Black, African and Caribbean young people causes avoidance of services among these populations. This is particularly true for young people who are newcomers to Canada, who may be subjected to misunderstandings of immigration law and discrimination against foreigners.

• C hallenges in transitioning HIV-positive adolescents from pediatric to adult care negatively impacts access to treatment, care, and support, directly resulting in adherence problems and resistances to medications. The later is particularly problematic given that adolescents living with HIV require well-managed regimens to ensure availabilities of medication classes to support an entire lifespan.

• A low level of sexual health education contributes to poor health outcomes and inhibits proactive health management among many young people living with HIV and Viral Hepatitis co-infection.

• M ental health and wellness impacts the ability to manage treatment and overall health. For young people with traumatic childhood experiences, this is often identified as the number one barrier to HIV prevention, as well as successful treatment for people living with HIV.

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Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

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Take Action: Tools, Solutions and Alternatives

Below is a list of actions you can take as young people living with HIV or Viral Hepatitis co-infection, as a service provider working with young people, as a researcher or policymaker, or as an allied member of the community.

Actions • E liminate bias, ignorance and discriminatory practices within healthcare settings, including HIV-related stigma, as well as stigma and acts of discrimination based on sex work, drug use, gender, race, culture and age through knowledge exchange and policy changes. Educate and train service providers on the material presented in this curriculum.

• A dvocate and support greater access to youth-specific networks and social supports that speak to the realities of young people living with HIV and Viral Hepatitis co-infection. Implement peer-based mentoring and support services and programs for and by young people.

• O ffer culturally appropriate programming for young people. Incorporate novel and modern approaches for reaching young people. Arts-based approaches have demonstrated success with some young people living with HIV. • I nvolve young leaders living with HIV in designing services for young people. Develop youth-specific forums and spaces to engage young people in dialogue about treatment access barriers and programs for addressing them.

• P rovide young people with a range of information regarding treatment options and support them through the decision-making process around treatment regimens and treatment initiation. Link young people with services and resources.

• P romote specialized co-infection services for young people living with HIV or viral hepatitis co-infection who are incarcerated in federal and provincial prisons. Facilitate and help generate legal support resources for young people facing criminal charges and legal complications. Support community programming that brings harm reduction resources to people living with HIV in prison.

• P rovide referrals to legal and social supports for young people living with HIV who experience violence or who are at risk of violence if you cannot provide them through your service centre. Provide additional support to young people in following through with referral appointments.

• P rovide housing and shelter resources for young people living with HIV who require it. This includes providing safe housing for children and young people escaping violent and abusive situations. Put your voice behind political initiatives promoting greater access to housing in your community.

• E ncourage young people to get involved in research dialogue and design, as well as program development. Ensure research and programs addressing HIV among young people are driven by GIPA principles.

• D evelop and provide adherence support programs and resources for young people that are reflective of the unique challenges facing this population. This may include support for managing side effects of treatment and support for complications associated with drug use.

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Tools for overcoming treatment access barriers facing young people living with HIV and Viral Hepatitis Co-infection in Canada

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