#63 Hep SA Community News

Click ‘n Read Community News

#63 • April 2014

hepsa.asn.au/library for the latest free, online resources... new viral hepatitis treatments, tests, nutrition, mental health, discrimination, project reports, drug issues, multicultural information, research, policies or statistics...

Our online library catalogue has links to: 8 Factsheets and brochures, 8 books and journal articles, 8 video and audio clips, 8 reports and policies, ...and many useful websites

Online Library Tel: 8362 8443 or 1300 437 222 (regional callers) librarian@hepsa.asn.au

Clean Mods, Safe Bods

Eliminating Hep C? • Health Minister Interview • Hep C Vaccine Coinfection & Treatment • Treatment as Prevention

FREE! Please take one

or visit us at 3 Hackney Road, Hackney 5069

63 cover pages3.indd 1

16/04/2014 12:20:57 PM

Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis.

Street: Mail: Phone:

Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepatitissa.asn.au

STAFF Executive Officer: Kerry Paterson

20 YEARS!

In September, Hepatitis SA (formerly the Hepatiti s C Council of SA) will be celebrating its 20th anniversary. Please get in touch with us with yo ur memories of the organisa tion’s early years, or with any ideas of what you’d like to see us do to celebrate our first two de cades.

Email us at editor@hepa titissa.asn.au

Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold Hepatitis SA Helpline Volunteers: Debra Karan Louise Education Coordinator (Acting): Nicole Taylor Educators: Claire Hose Shannon Wright Hepatitis B Coordinator Jenny Grant

Front cover: Based on Clean Mods Safe Bods DVD cover design

by James Morrison.

Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au.

Editor: James Morrison Non-staff Contributor: Danella Smith

Information and Resources Coordinator: Cecilia Lim Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene

Contents

ICT Support Officer: Bryan Soh-Lim

1

Eliminating Hep C?

Librarian: Joy Sims

3

Hep C Vaccine Research

Outreach Hepatitis C Peer Education & Support Project Coordinator: Lisa Carter

5

Interview with Health Minister

Peer Educator Mentor: Fred Robertson

7

A New Chapter

Peer Educators: Dean Karan Mark Penni Will

8

Clean Mods Safe Bods

CNP Peer Projects Coordinator: Michelle Spudic

10

Saving Livers in Nepal

11

Treatment as Prevention

CNP Peer Projects Officer: Carol Holly CNP Peer Educators: David Kylie Mark Nikkas Patrick Penni Sue BOARD Chairperson: Arieta Papadelos Vice Chairperson Bill Gaston

13

Coinfection & Treatment

15

What’s On

16

In Our Library

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline

Adelaide Dental Hospital A specially funded clinic provides priority dental care for people with hepatitis C with a Health Care Card.

Call Hepatitis SA on 1300 437 222 for a referral.

AIDS Council SA ACSA has closed down.

See p3 of issue 61 for details and replacement service contact details. beyondblue Mental health information line 1300 224 636 www.beyondlbue.org.au Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service.

1300 131 340 Community Access & Services SA (a service of the Vietnamese Community in Australia, SA Chapter) Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8447 8821

Secretary: Lindsay Krassnitzer Treasurer: Howard Jillings Senior Staff Representative: Kerry Paterson

63 cover pages3.indd 2

Hepatitis SA Free education sessions, printed information, telephone information and support’, referrals, clean needle program and library.

1300 437 222 (cost of a local call)

Administration: Megan Collier Amita Gurung Kam Richter

Ordinary Members: Gillian Bridgen Jeff Stewart

Useful Services & Contacts

Catherine Ferguson Dr Judith Peppard

Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

We welcome contributions from Hepatitis SA members and the general public.

Department for Health and Ageing, SA Health has contributed funds towards this program.

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

P.E.A.C.E. HIV and hepatitis education and support for people from non-English speaking backgrounds.

1800 650 890 www.headspace.org.au

(08) 8245 8100

Lifeline National, 24-hour telephone counselling service.

Positive Life Services and support for HIV positive people – including treatments information and peer activities.

13 11 14 (cost of a local call) www.lifeline.org.au

(08) 8293 3700 www.hivsa.org.au

Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers.

SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

13 14 65 MOSAIC Counselling service For anyone whose life is affected by hepatitis.

(08) 8223 4566 Nunkuwarrin Yunti A city-based Aboriginal-controlled health service with clean needle program and liver clinic.

(08) 8406 1600

(08) 8351 7626 SAVIVE SAVIVE has closed down. Its role has been taken on by Hepatitis SA: please contact us for more information on 8362 8443.

The Second Story Free, confidential health service for youth aged 12 to 25.

Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100

Viral Hepatitis Community Nurses Care and assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for appointment.

Central & North:

Margery - 0423 782 415 margery.milner@health.sa.gov.au Debbie - 0401 717 953 deborah.perks@health.sa.gov.au Trish - 0413 285 476 South:

Rosalie - 0466 777 876 rosalie.altus@fmc.sa.gov.au Emma - 0466 777 873

Are you interested in volunteering with Hepatitis SA? Give us a call on 08 8362 8443 or drop us a line at admin@hepatitissa.asn.au. We rely on volunteers for many of our vital services.

16/04/2014 12:20:59 PM

News

Eliminating Hepatitis C

C. Lim/Hepatitis SA

An ambitious but achievable goal

H

epatitis C kills nearly 700 Australians every year, mostly from chronic liver failure and liver cancer, and costs over $78.9 million in diagnosis and treatment. Around 230,000 Australians have chronic hepatitis C infection and 6,600 to 13,200 new infections occur every year.

The current treatment (pegylated interferon and ribavirin) comes with a number of unpleasant and serious side effects such as nausea, fever, depression and the risk of birth defects if users become pregnant.

Worst of all, the cure rate is less than 75%. Consequently, few Australians undergo treatment (less than 3,000 people in 2012) and the idea

that hepatitis C could be eradicated has long seemed a distant possibility.

But recent advances in hepatitis C treatment give reason for optimism.

New therapies New hepatitis C treatments known as direct-acting antiviral (DAA) therapies are likely to require only six to 12 weeks of treatment, have minimal side effects and cure rates of over 90%, including in people with advanced liver disease or who have previously failed therapy.

The United States Food and Drug Administration and the European Medicines Agency have already approved sofosbuvir, a highly effective DAA,

to treat people with hepatitis C genotypes 2 and 3.

The manufacturer is seeking similar approval in Australia through the Therapeutic Goods Administration and listing on the Pharmaceutical Benefits Scheme, which would make it available for $36.90 or $6 for concession card holders. The Australian government would pay the remaining cost.

Although sofosbuvir is still being used in combination with pegylated interferon to treat hepatitis C genotype 1 (the most common subtype), pegylated-free regimes should be available in the next 12 months. Patients will then only need to take a tablet once or twice a day. (continue next page)

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 1

1

6/05/2014 2:40:55 PM

News

Eliminating Hepatitis C Treatment as prevention Thanks to DAAs, treatment as prevention, a concept more commonly associated with HIV, is gaining credence in the hepatitis C field (see report on page 11).

Put simply, if someone with hepatitis C is treated and cured, the individual benefits by avoiding chronic liver disease and the broader community benefits because the patient can no longer transmit the virus to another person.

Modelling undertaken both internationally and within Australia suggests that a treatment-as-prevention approach using DAAs, combined with effective harm reduction strategies – such as needle and syringe and methadone programs – could markedly reduce hepatitis C prevalence over the next 15 years and eventually eliminate the virus.

While it will be vital that people with advanced liver disease have early access to DAAs, the success of treatment-as-prevention hinges on the treatment of people who currently transmit the hepatitis C virus, regardless of the severity of their disease.

Current modelling suggests that in Melbourne, the number of people infected with hepatitis C would halve if we treated 40 per 1,000 people who inject drugs over the next 15 years.

2

This will mean treating 500 to 1,000 people per year, which might not seem many but will pose a considerable economic challenge for government; the likely cost of a course of non-interferon DAA treatment is $80,000– $100,000.

Despite the cost of this initial investment – over $50 million per year – there are enormous long-term benefits to the individual, as well as being highly cost effective for the community.

Overcoming the barriers A key issue for the treatment-as-prevention approach is engaging effectively with the group at most risk of hepatitis C. There is no guarantee that people who inject drugs will be willing to engage in early therapy; many have more immediate health and social problems.

In addition, many people who inject drugs have encountered stigma and discrimination in past dealings with health services and health professionals, and might reasonably be sceptical of a treatment-as-prevention approach that appears to primarily benefit others.

people experienced in working with drug users who can attend to their complex health needs.

Another concern is that the health resources needed for treatment could be diverted from successful prevention and harm reduction programs, notably needle and syringe programs and opiate substitution therapy.

These programs have successfully reduced the risk of transmission of hepatitis C and other blood-borne viruses such as HIV, as well as reducing other injecting-related harms.

Eliminating hepatitis C is an ambitious but achievable goal; the new DAAs will kickstart this process, but it needs a strategic approach, in partnership with people who have or are at risk of hepatitis C infection. We need a sustained and multi-pronged approach – and the time to start is now.

Margaret Hellard Adjunct Professor, Monash University; Associate Director and Head, Centre for Population Health at Burnet Institute Originally published at The Conversation (theconversation.com/ eliminating-hepatitis-c-an-ambitious-butachievable-goal-24485) and reprinted with permission.

It will be important to locate treatment services in easily accessible community locations, and staff them with

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 2

6/05/2014 2:40:55 PM

News

A Hep C Vaccine?

Adelaide research with huge potential

The new type of DNA vaccine to protect against the viruses has taken an important step forward, with University of Adelaide researchers applying for a patent based on groundbreaking new research.

Professor Eric Gowans from the University’s Discipline of Surgery, based at the Basil Hetzel Institute at the Queen Elizabeth Hospital, has submitted a patent application for what he describes as a relatively simple but effective technique to stimulate the

body’s immune system response, thereby helping to deliver the vaccine.

While pre-clinical research into this vaccination technique is still underway, he’s now searching for a commercial partner to help take it to the next stage.

Professor Gowans’ work has focused on utilising the so-called “accessory” or “messenger” cells in the immune system, called dendritic cells, to activate an immune response.

These are a type of white blood cell that play a key role during infection and vaccination.

“There’s been a lot of work done in the past to target the dendritic cells, but this has never

Professor Eric Gowans been effective until now,” Professor Gowans says.

“What we’ve done is incredibly simple, but often the simple things are the best approach.

“We’re not targeting the dendritic cells directly—instead, we’ve found an indirect way of getting them to do what we want.”

Professor Gowans and his team have achieved this by including a protein that causes a small amount of cell death at the point of vaccination.

“The dead cells are important because they set off danger signals to the body’s immune response.

The micro-needle device used to deliver the vaccine directly into the skin

This results in inflammation, and the dendritic cells become activated.

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 3

Virus/lymphocyte image from the Center for Disease Control

A

vaccine against hepatitis C and HIV could be a reality in the near future, thanks to research taking place in Adelaide.

3

6/05/2014 2:40:56 PM

News

Those cells then create an environment in which the vaccination can be successful,” Professor Gowans says.

But, Professor Gowans says it’s likely it could be used as a preventative vaccine for hepatitis C and HIV in the next five years.

Using a specialised micro-needle device, the researchers can puncture the skin to a depth of 1.5mm, delivering the vaccination directly into the skin.

“It’s a significant advance; the strategy is novel because we have the patent and it’s been examined.

“We chose the skin instead of the muscle tissue, which is more common for DNA vaccines, because the skin has a high concentration of dendritic cells,” Professor Gowans says.

The vaccine is currently designed to treat patients who already have hepatitis C.

“I don’t want to be too optimistic but I think when we do the clinical trial next year I think we can then begin to work out how best to take it forward from there.”

Because the technique has the potential to translate to other, more common viruses in addition to the devastating hepatitis

C and HIV viruses, the project attracted seed funding from The Hospital Research Foundation, and additional funding from the National Health and Medical Research Council (NHMRC).

The research is still in the pre-clinical phase, with a 40-patient study on genotype-3 hepatitis C due next year. “This technique has worked much better than I anticipated,” Professor Gowans says.

“We’re now ready for a commercial partner to help us take this to the next phase, and we’re in discussions with some potential partners at the moment.”

HIV-1 buds from a cultured lymphocyte: The vaccine stimulates the body’s immune response and combines with the white blood cells to kill HIV and HCV cells.

4

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 4

6/05/2014 2:40:58 PM

Interview

The Health Minister on BBVs James Morrison talks to the Health Minister about SA’s BBV policy

How do you think South Australia’s approach to blood-borne viruses has changed in the 11 years Labor has been in government in SA? Since the Labor government has been in government in South Australia we have seen the release of the first-ever SA Health Hepatitis C and soon-tobe-released Hepatitis B Action Plans, and the fifth HIV Action Plan.

These action plans align with national blood-borne virus strategies, the SA Health Strategic Plan and South Australia’s Health Care Plan, and demonstrates the government’s commitment over this period to improving the health of all South Australians at risk of or affected by a bloodborne virus.

Grant funding for viral hepatitis has increased over this period so that a more equitable funding arrangement is in place for community services.

SA Health has also invested in a statewide viral hepatitis nurseled model of care to support

people in care or considering treatment for hepatitis C. There has been increased engagement with priority populations, including people from culturally and linguistically diverse backgrounds and Aboriginal people, and expanded access to prevention and treatment services.

Do you see your own role as Health Minister being one of continuity with the past, or are there some more dramatic changes needed in the health system?

SA Health is facing considerable financial challenges. As a result of declining revenues and fiscal targets, the South Australian government and particularly SA Health faces a prolonged period of financial constraint at the same time as tackling underlying increases in the costs and demand for healthcare.

As the Minister for Health, it’s my job to work with SA Health, clinicians, nurses and various interested groups to push for the need to think differently and innovatively in order to distribute existing resources effectively and ensure provision of safe, clinically effective quality care.

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 5

Photo CC Community History SA [flickr.com/photos/communityhistorysa/7095377087]

Prior to March 2014’s South Australian election, Minister for Health Jack Snelling spoke to the Hepatitis SA Community News about hepatitis and bloodborne viruses (BBVs).

5

6/05/2014 2:41:01 PM

Interview The government has had a long-standing commitment to funding projects to reduce hep C and HIV. Are there plans for more funding for hepatitis B prevention, education and support?

SA Health administers approximately $5 million in annual grant funding to a range of service providers, including Hepatitis SA, for blood-borne virus prevention, education and support. This includes projects to reduce hepatitis B, hepatitis C, and HIV in the community.

The department has recently reviewed the Funding and Service Plan for this program area and hepatitis B has been identified as a new priority.

In order to do this some resources will be reorientated to fund hepatitis B services in the community. This will be done without impacting on the other essential blood-borne virus prevention, education and support services.

How do you feel about progress with SA’s HBV Action Plan?

I look forward to the release of South Australia’s first-ever Hepatitis B Action Plan as chronic hepatitis B infection is a significant public health challenge for the state.

We have been very successful in protecting schoolage children from hepatitis B infection through the National Immunisation Program; however, there are many South Australians currently living with hepatitis B, or at risk of being infected with hepatitis B, who were never vaccinated through this program.

The action plan will provide a framework for service planning priorities, including community

6

support, for people affected by hepatitis B. The SA Health Sexually Transmissible Infection and Blood Borne Virus Advisory Committee, chaired by the Chief Public Health Officer, will monitor progress on the Hepatitis B Action Plan and will provide a mid-term report on the progress of its implementation.

So what do you see as most important for the State’s future regarding BBV policy?

The South Australian Government is committed to protecting and improving the health of all South Australians.

It is important that BBV policy continues to facilitate access to the means of blood-borne virus prevention, early testing, diagnosis and support, and to assist people living with a bloodborne virus to receive the best available treatment and care.

It is also important that BBV policy continues to increase community awareness of bloodborne viruses.

Do you have a view on mandatory offender testing for blood-borne viruses, given your government’s proposed legislation for SA? Last October the Premier announced the government’s intention to introduce legislation, as part of a community safety initiative involving police, which compels offenders whose blood or saliva comes into contact with a police officer to undergo a mandatory blood test for blood borne viruses. The government will consider a range of expert advice as the legislation develops.

How can we best engage migrants from countries with high BBV prevalence, and help them get tested and treated for these viruses?

There is probably not just one best way, or a one-size-fits-all approach, to engage with people from high-prevalence countries.

The government is committed to working in partnership with migrant communities, clinicians and community service providers with expertise in this area to ensure that approaches are culturally appropriate and sensitive to the needs of people living with an often stigmatised illness.

In this way, the approach is necessarily as diverse as the communities we want to work with.

Finally, with your interest in boxing, how do you feel about the current rules for blood spills in sport?

I am told by SA Health that although the risk of being infected by one of the blood-borne viruses through participation in sport is very low, there is still some risk when blood is present.

All sports, at both professional and amateur levels, should implement blood rules for the safety of everyone. This means that a player who is bleeding or has blood on their clothing must immediately leave the playing field or court and seek medical attention.

Importantly, all blood and body fluids must be treated as potentially infectious whether on or off the playing field. The blood rules remind us to be blood-aware.

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 6

6/05/2014 2:41:01 PM

My Story

A New Chapter K

aran found out about her hepatitis C in 1994, a time when there wasn’t much information or many treatment options.

“I was reluctant to go to hospitals... doctors used to be very judgemental.

The label of having been an injecting drug user stays with you,” she recalls “No matter how much you have turned your life around, some people still discriminate, which, I think, is wrong.”

At the time of her diagnosis, she had a two year old child and had just become a single mum. “I was devastated. I thought I’d been handed a death sentence. I was very depressed for a while but eventually turned it around... for my young baby.”

Karan didn’t have much support then but felt if she stopped drinking and looked after herself she could manage it. “I wasn’t a big drinker to start with, so it wasn’t too hard to give up,” she says. ” Luckily I didn’t have any symptoms apart from fatigue. I started living healthy to minimise the liver damage.”

Treatment In 2008 Karan heard about combination therapy being provided through Nunkuwarrin Yunti. “I spoke to a nice nurse there and finally got myself onto treatment after being against it for so long. I had to pace myself, have days off to regain my strength but I made sure I still went out and did things.

“It wasn’t an easy road. I didn’t get any rashes but was still very careful about what the soaps and creams I was using for my skin,” she says.

“Going on treatment was the most empowering thing I did for my hep C.” Unfortunately the treatment didn’t work that time. Karan says it was disappointing but didn’t think it was a waste of time. “It gave my liver a chance to recover,” she says.

“Going on treatment was the most empowering thing I did for my hep C.”

“I was interested in new treatments because I have a daughter who is 22 now and one day I could be a grandmother. I wanted to be around for that.

“I’d do anything to get rid of the virus.

The side effects didn’t scare me. If I had to get sick to get better, then I was willing to do that.

In 2013, Karan was accepted into a trial at the Royal Adelaide Hospital. She reports delightedly that she completed the trial with “virus undetectable”.

Future For a few years now, Karan has been working as a peer educator at Hepatitis SA. “It is one of the best jobs I can think of for myself. I love it.

“People feel a lot better once they find out all the information about hep C. To come to terms with your disease you have to have some degree of understanding and acceptance. A peer educator can help you with that.

“We can also put people in touch with hep C friendly GPs if they are having difficulties with their current doctors.”

She would like to see more education about hepatitis C in schools. “Schools need to open up and allow discussion. It is the only way to educate young people before it is too late. Education is the key.”

She also hopes to see a vaccine developed for hepatitis C so the virus can be eradicated forever.

As for her personal life, Karan says she’d like to finish her visual arts degree. “I do a bit of everything: ceramics, painting, jewellery...

“I’d also almost finished a diploma in women’s studies.

“All these things I started while I was raising my daughter. I’d like to complete them and start a new chapter in my life – virus free.”

- Interview by Alyona Haines

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 7

7

6/05/2014 2:41:04 PM

Hepatitis educator Shannon Wright on hep C, body art and young people

Clean Mods, Safe Bods

C

lean Mods, Safe Bods is

a new resource developed by Hepatitis SA, which aims to educate year 9 high school students about hepatitis C. This virus is an important health issue to discuss with young people, as approximately 1 in 10 new infections are amongst 15-19 year olds in Australia.

Although the majority of hepatitis C infections in Australia are as a result of sharing injecting drug equipment, new hepatitis C infections are also occurring through “backyard” tattoos and piercings, which are tattoos and piercings performed outside of professional establishments.

Many young people seek “backyard” body art because they are unable to access professional tattoo studios, or receive intimate piercings from professional piercers, until they are eighteen.

Equipment to perform “backyard” body art is also readily and inexpensively available to young people via the internet.

While many young people attempt to reduce the harms of “backyard” body art through exposing equipment to a flame, or soaking it in bleach, alcohol or methylated spirits, these methods

8

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 8

6/05/2014 2:41:13 PM

Working with Communities

do no eliminate the entire virus.

Only a professional autoclave machine can effectively sterilise equipment.

Clean Mods, Safe Bods is designed so teachers can facilitate a lesson about hepatitis C, without having significant prior knowledge about the virus.

The resource is a self-timed presentation with a voice-over that takes students through important information.

At intervals during the presentation, there is allocated time for four activities, which are easy to facilitate following step-bystep instructions in the Teacher’s Guide.

The first activity is a class discussion about tattoos and piercings.

Through encouraging students to share their own experiences and opinions about body art, this activity aims to generate interest in the topic and raise questions about safe practices.

The second activity is a game about hepatitis C transmission risks.

This game aims to reinforce the message that hepatitis C is transmitted through blood-toblood contact only, and that casual, everyday contact is not a hepatitis transmission risk.

A discussion of a video called Hannah’s Story is the third activity.

Hannah’s Story is a video link found in the Prezi presentation.

It is an interview with Hannah, a 24-year-old who has lived with hepatitis C for eight years. Hannah is a thoughtful, healthy and happy young person.

Through her experience, students may understand how misinformation, and stigmatising attitudes and behaviours, can negatively influence others.

The video may also be empowering and reassuring to other young people who are living with the virus.

Finally, students will participate in a quiz, allowing them to test their new knowledge, and enabling teachers to address any misinterpretations, and reinforce key messages.

Clean Mods, Safe Bods will soon be available free of charge on the Hepatitis SA website, or hard copies can be obtained by contacting the organisation.

Teachers may choose to utilise the resource with their students, or organise for Hepatitis SA Educators to assist in facilitating the lesson.

An evaluation form for the resource will also be available on the Hepatitis SA website. Any feedback from teachers or community members who utilise the resource would be very much appreciated.

Enquiries about the new resource should be directed to Shannon Wright (shannon@ hepsa.asn.au) or Nicole Taylor (nicole@hepsa.asn.au), or through calling Hepatitis SA on 8362 8443.

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 9

9

6/05/2014 2:41:19 PM

Working with Communities

Saving livers in Nepal Danella Smith reports on a new liver clinic providing a much needed service.

A

dvanced liver disease is commonly seen in third world countries as access to information, services and medical treatments are often extremely limited.

Dr Sudhamshu, who lives in Nepal realised this at a young age and has since dedicated his life to making a change by advancing medical practices in his country.

Dr Sudhamshu says, “The burden of liver disease is not decreasing in Nepal.

“I felt that we needed a stateof-the-art clinic to cater [to] the need of liver disease patient[s]”.

The Centre for Liver Disease (CLD) has sat within the hustle and bustle of Kathmandu for 18 months after Dr Sudhamshu gained access to a FibroScan machine.

The CLD is currently run by 10 staff members including hepatologists, nurses, phlebotomists, receptionists and office assistants.

10

The Centre’s motto is “Save our liver” and the staff aim to do just that by offering discounts to the elderly and disadvantaged.

Prior to the CLD opening, people with liver diseases in Nepal would travel to neighbouring countries such as India for the medical treatments they required.

Twenty-five patients visit the CLD each day where they can find support with counselling, consultations, vaccinations and procedures for themselves and their families.

Alcohol consumption is a major reason for liver disease in Nepal as farmers and those living in high altitudes see alcohol as a staple in their kitchens.

Water-borne hepatitis A is also a common cause of hepatitis within Nepal.

Dr Sudhamshu says, “Hepatitis B and C are increasingly diagnosed due to screening and availability of efficient diagnostic tools.”

“Liver transplantation is not performed in our country; we need to send our patients to other countries, particularly to India.

“Aside from liver transplantation, we are able to do all other procedures.

Other procedures such as trans-aretrial chemoembolization and partial splenic embolization are performed at a private hospital, where Dr Sudhamshu is a part-time consultant.

Dr Sudhamshu says, “Truly speaking, our clinic is the only one of its type in our country.”

He says besides providing service to liver patients, the CLD also aims to provide training to the doctors who plan to take hepatology as their career.”

The CLD hopes to have two more hepatologists shortly as two students they have been closely working with are close to finishing their medical study abroad, which will allow the clinic to remain open 24/7.

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 10

6/05/2014 2:41:19 PM

Treatment

Treatment as Prevention: is it feasible?

Carol Holly reports from the 13th HHARD Conference

I

n February I attended the 13th Social Research Conference on HIV, Viral Hepatitis and Related Diseases, a conference that brings together researchers, community organisations and the affected community to discuss and showcase new research and practice relating to HIV and viral hepatitis. Throughout the conference there was quite a bit of discussion about Treatment as Prevention to reduce transmission of hepatitis C. Treatment as Prevention (TasP) is an approach that has been used for the last 4-5 years to reduce HIV transmission. There is widespread evidence that being on HIV ART (anti retroviral therapy) with an undetectable viral load

reduces the risk of HIV transmission. Treatment as Prevention (or TasP) is a strategy for increasing the number of HIV positive people on treatment in order to reduce the incidence of transmission, ie using treatment as a means of preventing the spread of HIV. It is now being suggested that using a similar TasP approach with people who inject drugs could greatly reduce the prevalence of hepatitis C. We know that treatment has a public health benefit.

Hepatitis C treatment is continually improving, as is our understanding of how treatment works. We also know that in Australia about 80% of new HCV infections are

among people who inject drugs (PWID) yet not even 2% of PWID are accessing treatment. Being a current injector in and of itself doesn’t preclude someone from accessing treatment, adhering to and completing treatment or clearing the virus (achieving an SVR or sustained virological response).

You really don’t need to treat many people to achieve the desired outcome. Looking at modelling using Melbourne as an example - the baseline [current] treatment rate of PWID is less than 3 in 1000. If that was scaled up to 80 in 1000 (8% of PWID in Melbourne) then HCV could potentially be eliminated in Melbourne by 2027. Elimi-

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 11

11

6/05/2014 2:41:24 PM

nation means a reduction to zero transmissions in a defined geographical area in conjunction with ongoing measures to prevent re-establishing transmission, not to be confused with eradication which means a complete and permanent worldwide reduction to zero new cases, with no further control measures required.

So how would Treatment as Prevention be implemented in relation to hepatitis C? Researchers propose that we need to reduce HCV amongst networks of injectors by focussing on ‘core transmitters’ – PWID who are HCV positive and who use drugs with many other people.

But with the low numbers of PWID accessing HCV treatment there needs to be a range of strategies to reduce access barriers. Some suggestions are: • Ensure there is high coverage of Needle Syringe Programs (NSP), Opioid Maintenance Treatment (OMT) services and treatment availability in areas where there are large populations of people who inject drugs.

• Expand screening /increase testing by implementing point of care testing (testing at services that PWID already access, such as OMT services) and utilise easier, quicker testing methods such as rapid finger prick testing, saliva or blood spot testing.

• When available, improve access to the newer short-duration, simple, tolerable HCV treatments (no interferon, no injection, one daily dose, 12

short treatment time).

• Establish good linkages between care providers (ie between AOD services and liver clinics etc)

for widescale advocacy by hepatitis and PWID organisations to improve access to new treatments as they become available.

• Enhance response strategies to support treatment adherence and increase support and education on risk reduction to prevent re-infection.

Other limitations of the TasP approach include:

• Increase treatment uptake using the ‘bring a friend’ approach – have injectors bring a friend/partner to treatment with them, particularly someone within their injecting network (someone they use with).The ‘bring a friend’ approach has been successful in reducing prevalence of syphilis and chlamydia.

• the stigma experienced by injectors when accessing health services,

Some of these strategies are already in place as one off projects or trials (ie ETHOS project in NSW) but the TasP approach is about putting guidelines in place to implement broad coverage of these strategies.

What are the limitations of treatment as prevention?

Firstly, there is limited funding available to treat the numbers of people needed.

TasP is currently not cost effective with the expected cost of the new treatments at $1,000 per pill.

At this price, the question is who will be allowed to access treatment? Will treatment be prioritised for people at risk of liver-related morbidity and mortality or people with genotypes that are easier to treat?

Certainly there will be a need

• the assumption that there will be GPs willing to treat people,

•

the side-effects of treatment—many people don’t see a need for treatment if they are not feeling sick, especially if treatment may potentially make them feel sick.

Hepatitis C Treatment as Prevention may well be an effective primary prevention tool but it MUST be a strategy that is implemented alongside harm reduction, not instead of it.

We need to strengthen harm reduction approaches and ‘prevention as prevention’ before jumping into ‘treatment as prevention’.

Sources Grebely, J., Dore, G.J. Can hepatitis infection be eradicated in people who inject drugs?

Antiviral Research (2014) (see http://dx.doi.org/10.1016/j. antiviral.2014.01.002) ‘What Role for Affected Community in Biomedical Treatment and Prevention and What Does it Mean in Their Real World?’ Symposium at Promises and Limitations: 13th Social Research Conference on HIV, Viral Hepatitis and Related Diseases, by Greg Dore, Colette McGrath, Adrian Dunlop & Sione Crawford

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 12

6/05/2014 2:41:24 PM

Treatment

Coinfection: HCV & HIV Living with two viruses: to treat or not to treat?

Rose Magdalene speaks to clinical practice consultant Anton Colman

D

eciding whether, and when, to treat your hepatitis C can be a difficult decision, but for people with both hepatitis C and HIV, the complexities can seem especially daunting.

In Australia, 25,700 people are currently living with HIV and it is estimated that almost 3,500 of them also have hepatitis C*. Hepatitis C can be more severe and progress more quickly in people with HIV†, making the decision of whether to treat more pressing for some.

Treatment rates for hepatitis C are low, with less than 2% of infected people accessing treatment each year‡. It is thought that the rate of treatment might be even lower for people with * HIV Futures Five, La Trobe University, 2006.

† Cowie, B et al. (Eds) (2010). Co-infection: HIV & Viral hepatitis a guide for clinical management. ASHM. ‡ Homes, J et all (2013) ‘Hepatitis C: an update’, Australian Family Physician, Vol 42, No. 6.

both viruses. After all, if you are already being treated for HIV the prospect of dealing with another set of medications and side-effects can be overwhelming, although treating hepatitis C can have substantial health benefits for someone with HIV. While it is unclear at this time whether hepatitis C has an impact on the progression of HIV, any liver damage caused by the hepatitis C could make it more difficult to tolerate HIV medications. So clearing hepatitis C may also improve the management of HIV in the long term.

The Hepatitis SA Community News spoke to Clinical Practice Consultant at the Royal Adelaide Hospital Viral Hepatitis Unit, Anton Colman, about hepatitis C treatment for people with coinfection.

What do you need to know if you’re coinfected with hepatitis C and HIV? If you’re coinfected you need to be seen regularly by an infectious disease consultant and whether you’re on treatment or not you need to be well controlled with your HIV. Are there any particular problems associated with treating both viruses at the same time?

We need to monitor them (more) closely…you’re likely to be treated for a longer duration if you’re coinfected. For example, if you have genotype 3, which is usually only 24 weeks of treatment, you’re likely to receive 48 weeks of treatment if you’re coinfected.

So being coinfected makes a difference to how effective treatment is?

Yes, the rates of SVR (sus-

APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 13

13

6/05/2014 2:41:24 PM

Treatment tained viral response) are similar but slightly lower if you’re coinfected. But also, now if you are genotype 1 you can get treated with the direct acting agents, boceprevir and teleprevir.

What do you think are the main benefits of hep C treatment for people who are coinfected?

If you receive a SVR to your hep C you’re reducing your burden of disease. In the long term it should be beneficial to reducing your chances of complications. Having a second virus means you may be increasing the progression of the disease or diseases.

Treatment uptake rates are very low for people with hep C, is this also the case for people who are co-infected with HIV? Yes, we don’t treat very many coinfected people in SA. But with the newer treatments this may increase because of shorter treatment times and greater success.

In some regards, if you are recommended for treatment and you are coinfected... people normally do quite well in the sense that they have a chronic disease, they’ve had a lot of dealings with the health care system, they may have already been on a significant pill burden ... so they understand the issues around compliance so in some respects ...

14

They’ve already built up quite a lot of self-management skills?

Exactly.

So where do people go for treatment? Who do they speak to if they’re considering treatment for the first time?

They should be under the care of an infectious disease (ID)consultant for their HIV and they will then assess whether they manage that person or whether they go under the care of a hepatologist but usually they would stay with their ID specialist.

What role do the nurses have?

That can vary a little bit on the model of care that they use but usually the nurse is there as a support person and an adviser—a mentor. We’ll do a lot of the education around treatment; we’ll do the first injection with the patient. We attempt to get people to self inject their interferon and then work out a care plan with them on when they need blood tests and when they need appointments - whether that’s with the specialists or with a GP in the community but if you’re HIV-positive you’re more likely to be under the care of a specialist. They usually see you on a fairly regular basis if you’re on treatment.

So the nurses are a good source of support. What other sorts of support are available for people who are on treatment?

Hepatitis C treatments are improving all of the time with greater success rates and shorter treatment times. If you’re considering treatment for hepatitis C, speak to your doctor or specialist, or call one of the Viral Hepatitis Support Nurses: Central & North: call Margery on 0423 782 415 South: call Rosalie on 0466 777 876 Or, if you’re concerned about how treatment will fit in with the rest of your life the counsellors from MOSAIC may be able to help. Call them on 8223 4566.

If you’d like to know how other people managed their treatment call the Hepatitis SA Helpline on 1300 437 222 or join our Calming the C Support Group (see p13 for more details).

We sometimes use hospital social workers or allied health specialists such as psychiatrists or dieticians, if required. We utilise the non-government sector with Hepatitis SA and the HIV sector and MOSAIC (counselling service) and any specialist services that may be appropriate for that person, such as if English is a second language, and so on.

There’s also Cheltenham Place (short-term residential care for HIV-positive people).

What other factors might affect treatment outcomes for people?

It doesn’t stop treatment but having a stable domestic situation, housing, stable relationships those things are taken into consideration when treating people.

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 14

6/05/2014 2:41:24 PM

What’s On Hepatitis C peer educators available to provide information and support to clients at the following services: Warinilla Outpatients Hepatitis C Treatment Clinic 92 Osmond Tce, Norwood Tuesdays monthly 2–5pm Upcoming dates: May 6 June 3 July 1 July 29 Aug26 Sep 23 Oct 21 Nov 18 Dec 16 Hutt Street Centre 258 Hutt St, Adelaide

Wednesday weekly 10am–12pm WestCare Centre 17 Millers Court (off Wright St), Adelaide

Wednesday weekly 10.30am–12.30pm

Southern DASSA 82 Beach Rd, Christies Beach

Monday monthly 10am–1pm Upcoming dates: May 26 June 23 July 21 Aug 18 Sept 15 Oct 13 Nov 10 Dec 8 Northern DASSA 22 Langford Dr, Elizabeth

Thursday fortnightly 10am–12pm Upcoming dates: May 1, 15 & 29 June 12 & 26 July 10 & 24 Aug 7 & 21 Sep 4& 18 Oct 2, 16 & 30 Nov 13 & 27 Dec 11

ASHM International HIV/Viral Hepatitis Co-Infection Satellite Meeting Theme: HIV/viral hepatitis: antiviral therapy development and implementation Melbourne | 18-19 July 2014 www.etouches.com/coinfectionmeeting2014 or coinfectionmeetingAIDS2014@ashm.org.au RESEARCH STUDY

Affected by hep C? Over 18 & able to speak English?

CNP Hepatitis SA

We would like to talk to you about care provided by private GPs Call Jane or send your number by text to 0404 676 304 More info: jane.scarborough@adelaide.edu.au.

Tel: 8313 7583

Monday - Friday 9am - 5pm Full range of syringes and needles. Water and filters also available for sale.

Call Us! For free, confidential information and support on viral hepatitis call:

1300 437 222 APRIL 2014 • HEPATITIS SA COMMUNITY NEWS •

63 internal pages - REVISED2.indd 15

15

6/05/2014 2:41:28 PM

In Our Library New to the Library Here are a few of the recent items to be added to our library....

New Library Quick Search for online resources We’ve recently added a new ‘Quick search’ feature on the library catalogue search page: you can now click on any of the subject headings (listed on the right hand side of the page) and go straight to a list of all resources for that topic. All of these resources can then be accessed online via the link in that item’s record.

may negatively influence the engagement of some communities with hepatitis B prevention and management... this report examines available research in the area and makes recommendations for future action.

Alcohol and Liver Disease, British Liver Trust, London, 2010.

This 33-page booklet contains information about the effects of alcohol on the liver, how to minimise damage, how to recognise symptoms and how to manage liver disease.

Available in our library at 2.1 BLT 143

Available in our library at 6.2 ELL 9 Hand-in-Hand: Report on Aboriginal traditional medicine, ANTAC, Sydney, 2013 This report establishes the foundations for the recognition of Aboriginal traditional medicine in Australia’s Aboriginal and Torres Strait Islander health policy. It outlines the context, role and current state of Ngangkari services in SA.

Hepatitis B: Breaking down the barriers, Rural Health Education Foundation, Canberra, 2013 This DVD contains a panel discussion with health professionals, patient video stories (around diagnosis, treatment and community perceptions) as well as a range of other resources for use by health professionals and communities.

Available in our library at 5.4 AV 2

Available in our library at 7.4 ANT 90

Stigma, Discrimination and Hepatitis B: A review of current research, ARCSHS, Melbourne, 2013

The broad issues of stigma and discrimination 16

More than Nutrition: Culture and cuisine from ethnically diverse regions, HELPP Flinders University, Adelaide, 2012

This booklet contains information about how food is traditionally served, the ingredients commonly used and recipes for religious and special occasions. It can be used by anyone working with or supporting diverse populations.

Available in our library at 4.1 HEL 42

• HEPATITIS SA COMMUNITY NEWS • APRIL 2014

63 internal pages - REVISED2.indd 16

6/05/2014 2:41:30 PM

Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis.

Street: Mail: Phone:

Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepatitissa.asn.au

STAFF Executive Officer: Kerry Paterson

20 YEARS!

In September, Hepatitis SA (formerly the Hepatiti s C Council of SA) will be celebrating its 20th anniversary. Please get in touch with us with yo ur memories of the organisa tion’s early years, or with any ideas of what you’d like to see us do to celebrate our first two de cades.

Email us at editor@hepa titissa.asn.au

Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold Hepatitis SA Helpline Volunteers: Debra Karan Louise Education Coordinator (Acting): Nicole Taylor Educators: Claire Hose Shannon Wright Hepatitis B Coordinator Jenny Grant

Front cover: Based on Clean Mods Safe Bods DVD cover design

by James Morrison.

Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au.

Editor: James Morrison Non-staff Contributor: Danella Smith

Information and Resources Coordinator: Cecilia Lim Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene

Contents

ICT Support Officer: Bryan Soh-Lim

1

Eliminating Hep C?

Librarian: Joy Sims

3

Hep C Vaccine Research

Outreach Hepatitis C Peer Education & Support Project Coordinator: Lisa Carter

5

Interview with Health Minister

Peer Educator Mentor: Fred Robertson

7

A New Chapter

Peer Educators: Dean Karan Mark Penni Will

8

Clean Mods Safe Bods

CNP Peer Projects Coordinator: Michelle Spudic

10

Saving Livers in Nepal

11

Treatment as Prevention

CNP Peer Projects Officer: Carol Holly CNP Peer Educators: David Kylie Mark Nikkas Patrick Penni Sue BOARD Chairperson: Arieta Papadelos Vice Chairperson Bill Gaston

13

Coinfection & Treatment

15

What’s On

16

In Our Library

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline

Adelaide Dental Hospital A specially funded clinic provides priority dental care for people with hepatitis C with a Health Care Card.

Call Hepatitis SA on 1300 437 222 for a referral.

AIDS Council SA ACSA has closed down.

See p3 of issue 61 for details and replacement service contact details. beyondblue Mental health information line 1300 224 636 www.beyondlbue.org.au Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service.

1300 131 340 Community Access & Services SA (a service of the Vietnamese Community in Australia, SA Chapter) Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8447 8821

Secretary: Lindsay Krassnitzer Treasurer: Howard Jillings Senior Staff Representative: Kerry Paterson

63 cover pages3.indd 2

Hepatitis SA Free education sessions, printed information, telephone information and support’, referrals, clean needle program and library.

1300 437 222 (cost of a local call)

Administration: Megan Collier Amita Gurung Kam Richter

Ordinary Members: Gillian Bridgen Jeff Stewart

Useful Services & Contacts

Catherine Ferguson Dr Judith Peppard

Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

We welcome contributions from Hepatitis SA members and the general public.

Department for Health and Ageing, SA Health has contributed funds towards this program.

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

P.E.A.C.E. HIV and hepatitis education and support for people from non-English speaking backgrounds.

1800 650 890 www.headspace.org.au

(08) 8245 8100

Lifeline National, 24-hour telephone counselling service.

Positive Life Services and support for HIV positive people – including treatments information and peer activities.

13 11 14 (cost of a local call) www.lifeline.org.au

(08) 8293 3700 www.hivsa.org.au

Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers.

SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

13 14 65 MOSAIC Counselling service For anyone whose life is affected by hepatitis.

(08) 8223 4566 Nunkuwarrin Yunti A city-based Aboriginal-controlled health service with clean needle program and liver clinic.

(08) 8406 1600

(08) 8351 7626 SAVIVE SAVIVE has closed down. Its role has been taken on by Hepatitis SA: please contact us for more information on 8362 8443.

The Second Story Free, confidential health service for youth aged 12 to 25.

Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100

Viral Hepatitis Community Nurses Care and assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for appointment.

Central & North:

Margery - 0423 782 415 margery.milner@health.sa.gov.au Debbie - 0401 717 953 deborah.perks@health.sa.gov.au Trish - 0413 285 476 South:

Rosalie - 0466 777 876 rosalie.altus@fmc.sa.gov.au Emma - 0466 777 873

Are you interested in volunteering with Hepatitis SA? Give us a call on 08 8362 8443 or drop us a line at admin@hepatitissa.asn.au. We rely on volunteers for many of our vital services.

16/04/2014 12:20:59 PM

Click ‘n Read Community News

#63 • April 2014

hepsa.asn.au/library for the latest free, online resources... new viral hepatitis treatments, tests, nutrition, mental health, discrimination, project reports, drug issues, multicultural information, research, policies or statistics...

Our online library catalogue has links to: 8 Factsheets and brochures, 8 books and journal articles, 8 video and audio clips, 8 reports and policies, ...and many useful websites

Online Library Tel: 8362 8443 or 1300 437 222 (regional callers) librarian@hepsa.asn.au

Clean Mods, Safe Bods

Eliminating Hep C? • Health Minister Interview • Hep C Vaccine Coinfection & Treatment • Treatment as Prevention

FREE! Please take one

or visit us at 3 Hackney Road, Hackney 5069

63 cover pages3.indd 1

16/04/2014 12:20:57 PM