#39 Hep C Community News by Hepatitis SA

Hepatitis

Community News #39 â&#x20AC;˘ March 2008

Hepatitis C & Young People

Hepatitis C Community News March 2008 â&#x20AC;˘

Introduction Young people are the focus of this issue for two obvious reasons. First of all, young people are frequently at risk of contracting hepatitis C through ignorance, carelessness and risk-taking behaviour. Secondly, young people are often neglected when society’s health resources are allocated. The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. 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.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au

The central story of this issue involves a group of high school students who have come together with the Hepatitis C Council and several other organisations to create a film promoting a strong message about hepatitis C. This film, Turning Point, will soon be released on DVD. We also look at the first news about what to expect from this year’s Hepatitis Awareness Week, which will be in May rather than October. We can’t say too much about the central promotional effort at this stage, but it will be a done a little differently than in past years.

Manager: Kerry Paterson

Finally, we present our usual mix of personal stories, news items, and project updates from the Council. As ever, we hope you enjoy this magazine, and please let us know if there’s anything liked, hated, or that you’d like to see covered in a future issue.

Administration Coordinator: Lynn Newman

Next issue’s copy deadline is 16 May, and it will be published in early June. See you then.

STAFF

Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Lyn Will Judy Anne Debra Michele Coordinator of Education Programs: John McKiernan Rural Education: Leslie Wightman Metropolitan Educator: Maggie McCabe Information and Resource Coordinator: Cecilia Lim

About the Cover Photographs, artwork, distressing and design by James Morrison. Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.

Contents Hep C & Young People 10

Turning Point

Youth & CNPs

Publications Officer: James Morrison

The Dangers of DIY Piercing

Librarian: Joy Sims

Plus!

Resource Volunteers: Bee Phil My Phuong Lyn Dean Justin

BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood

Awareness Week 2008

Hep C Vaccine Research in Adelaide

Nicola Roxon on Hepatitis C

A Depression Story

The New Rural Resource

Liver Biopsies

Treasurer: Darrien Bromley

A Letter to People Without Hep C

Senior Staff Representative: Kerry Paterson

The Rhythm Exchange

HCCSA Library News

Ordinary Members: Bill Gaston Carol Holly Janice Leafe Kristy Schirmer

Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. 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 Council members and the general public.

Hepatitis C Community News • March 2008

“Only three of them really know what is going on. Two are mad. The third is a huge, vicious chimpanzee.”

Awareness Week: Preparation Begins Hepatitis Awareness Week 2008: 19-26 May This year Hepatitis Awareness Week is taking place from 19 to 26 May, to coincide with World Hepatitis Day on 19 May. Our members will be sent more information closer to the week, but the campaigning has already begun. Here we present our 12 ‘asks’ of the Australian government which form part of the World Hepatitis Day campaign. The first six are common across all countries, and the second six are specific to Australia. All apply to both hepatitis C and hepatitis B. They were developed by Hepatitis Australia in conjunction with AIVL, ANEX, MHAHS and ASHM. They have been sent to Nicola Roxon and the Department of Health. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.

Public recognition of chronic viral hepatitis as an urgent public health issue The appointment of an individual to lead government strategy nationally The development of a patient pathway for screening, diagnosis, referral and treatment Clear, quantifiable targets for reducing incidence and prevalence Clear, quantifiable targets for reducing mortality Clear, quantifiable targets for screening Clear, quantifiable targets for treatment Clear, quantifiable targets for increasing access to needle and syringe program services The establishment of the first national hepatitis B strategy and third national hepatitis C strategy The development of targeted strategies to reduce late diagnosis in key population groups Public understanding of the key aspects of viral hepatitis transmission, prevention and treatment Implementation of prevention, treatment and care guidelines in custodial settings

For more about Hepatitis Awareness Week, visit www.hepatitisaustralia.com/events_projects/awareness.html, and for more on the new federal government and hepatitis C, please see page 3.

To celebrate Hepatitis Awareness Week, the Hepatitis C Council of South Australia is having an art exhibition, My Lucky Number. We are inviting people to submit artwork that is original and gives voice to issues concerning hepatitis C. Artworks can be include paintings, photographs, poems, videos, CDs, collages, drawings, sculptures, or even sound or lighting designs and installations. Examples of issues involving hepatitis C can include: body art (piercing and tattooing), injecting drug use, blood transfusion, depression, fatigue, isolation, support, disclosure,

community, tooth decay, sore liver, interferon, etc. Consider what issue you would like to give voice to, and how you can do this as successfully as possible. We will be happy to assist you with some material and/or to discuss developing your work and ideas. Please contact the Council for any queries or assistance regarding the exhibition. Forward your expressions of interest to Maggie McCabe (email maggie@ hepccouncilsa.asn.au) or ring 8362 8443. Works need to be submitted by April 28.

Hepatitis C Community News March 2008 •

Will a Hep C Vaccine come from Adelaide? An Adelaide-based research group looks at possible hepatitis C vaccines Adelaide scientists will lead a $2 million five-year project to develop new vaccines and explore better treatment options for people with hepatitis C. University of Adelaide virologists Dr Michael Beard and Dr Karla Helbig will work with colleagues from the University of NSW to develop new strategies to treat and prevent hepatitis C. The scientists, who are also attached to the Institute of Medical and Veterinary Science and Royal Adelaide Hospital, hope to identify antiviral proteins that can be used in the fight against hepatitis C. As many readers of this magazine are all too aware, there is no

and hepatitis C. “The development of vaccines and better treatments for both these viruses are urgent global health priorities,” Dr Beard said. “This program brings together a team of researchers with skills in basic virology and immunology with experts who can translate laboratory findings into human clinical trials. “Members of the program are clinicians with clinical trial experience in HIV and hepatitis C, and so novel vaccine strategies and treatment options identified by the basic science part of the program can be fed into the clinical part of the program. “The clinicians and scientists will

Dr Michael Beard and Dr Karla Helbig effective vaccine for hepatitis C, and the existing treatment can cause severe side effects. The success rate also varies between 50% and 80%, so many people cannot be cured by current therapies. The funds, awarded by the National Health and Medical Research Council (NHMRC), are part of a larger $17.7 million joint program grant, tackling both HIV/AIDS and hepatitis C. Dr Beard explains that this was the first Australian program grant awarded to study both HIV/AIDS Hepatitis C Community News • March 2008

work closely to collectively identify clinical problems and novel vaccine candidates and treatment strategies. “There are a number of novel vaccine strategies being investigated for HIV, based on the novel delivery of vaccine antigens, and these are nearing clinical trial. Initially we plan to adopt this strategy for use in investigating vaccination against HCV. “In my laboratory we have identified host-derived proteins that can block HCV replication. “These studies are very early in

development, but we are hoping that by understanding the natural host response to HCV infection we can develop novel therapeutics. Getting this to the clinic is clearly a long-term proposition.” This latest grant is an adjunct to three NHMRC project grants awarded to Dr Beard’s team in the past two years specifically for hepatitis C research. In 2006 the virologist was awarded more than $894,000 to investigate the link between alcohol and hepatitis C, and the basic mechanisms of liver disease. “In Australia, more than 264,000 people have been infected with the hepatitis C virus and there are approximately 10,000 new infections per year. A proportion of these are intravenous drug users, with alcohol playing a significant role in disease progression,” Dr Beard said. In relation to his previous research into HIV, Dr Beard said that vaccines had been trialled for HIV, but with little success. “There is antiretroviral treatment but this does not eradicate HIV, it only keeps it under control for a period of time. It is also very expensive and therefore not accessible on a global scale”. Dr Beard said the program would provide a pipeline to develop and test vaccines and novel treatments in a timely fashion. The nine scientists awarded the joint $17 million NHMRC program grant are from the University of Adelaide, University of NSW, University of WA and University of Melbourne. “There are eight other clinicians and scientists involved from the program,” Dr Beard said. Professor David Cooper from the University of NSW heads the team. “These workers are committed to the project for between 50% and 80% of their working time. That depends on their other commitments and clinical loading.” The Hepatitis C Community News will provide updates on this research as they become available.

Roxon on Hepatitis The New Federal Government’s Approach to Hepatitis C Before last year’s federal election, all of the major and important minor parties were approached regarding their views on how they would deal with Australia’s hepatitis C issues. With Labor winning government, we thought it would be a good idea to show you what they said. These questions were answered by Nicola Roxon, the new Minister for Health. Does your party support a sensitive mass-media campaign to educate the broader community about hepatitis C? Federal Labor recognises the need to promote awareness of hepatitis C. We are committed to working with stakeholders to identify the most effective and appropriate approach for achieving this objective. Will your party commit to advocating within the new parliament for adequate resourcing of a hepatitis C mass-media campaign? Federal Labor would seek to ensure that any efforts to promote greater community awareness of hepatitis C were appropriately resourced. Does your party support the expansion of hepatitis C treatment access points to improve treatment uptake? Frontline treatment of conditions such as hepatitis C is primarily the responsibility of state and territory health departments. Nevertheless, Federal Labor has no in-principle objection to the expansion of hepatitis C treatment access points to non-hospital settings. Federal Labor believes in expanding the role of non-hospital health care services (e.g. primary health care) to enable people to seek treatment, where possible, in local communities to relieve the pressure on hospitals. Will your party commit to the funding of clinical trials of different modes of treatment for hepatitis C? Federal Labor acknowledges that clinical trials of different modes

of treatment for hepatitis C could potentially play an important role in helping to improve treatment uptake. Does your party support the provision of successfully proven harm-reduction programs such as methadone and needle and syringe programs? Federal Labor supports a range of approaches, including supply reduction and promotion of awareness of the risks associated with drug use. Will your party commit to advocating within the new parliament for provision of funding incentives to the states and territories to ensure expansion of access to needle syringe programs? Federal Labor would consult with the States and Territories about funding for current programs. Will your party advocate within the new Parliament for the implementation of the Hepatitis C Prevention, Treatment and Care: Guidelines for Australian Custodial Settings? Federal Labor recognises the particular challenges posed by the high rates of hepatitis C among prisoners. This is a significant public health concern, both for prisoners and the broader community. While we cannot commit to the guidelines before they have been made available, we will examine them closely upon their release. Does your party support the expansion of harm reduction programs to custodial settings? As far as we are aware, a range of programs currently exist in custodial settings in Australia’s states and territories (e.g. methadone treatment programs). These are a matter for state and territory Governments. Will your party commit to advocating within parliament for increased funds specifically targeting hepatitis C and hepatitis B research across all streams (basic science, clinical, social, virology and epidemiology)?

Federal Labor recognises the importance of specific research into hepatitis B and C across all research streams. We will seek to ensure that this research is appropriately funded. Will your party commit to ongoing support to hepatitis community organisations for their work in partnership with Aboriginal and Torres Strait Islander communities for viral hepatitis education and prevention programs? Federal Labor understands that there is a particular problem with viral hepatitis in Indigenous communities. We will seek to work in partnership with hepatitis community organisations and Indigenous communities to address this problem. Will your party commit to endorsing 19 May as World Hepatitis Day from 2008? Federal Labor believes in the importance of raising awareness of hepatitis and will consider endorsing May 19th as World Hepatitis Day. Will your party commit to advocating within the new parliament for specific funding for raising awareness of hepatitis B and C within Australia in association with World Hepatitis Day? If World Hepatitis Day was endorsed by the World Health Organisation, the Rudd Labor Government would consider providing appropriate funding for awareness-raising activities that might be conducted in conjunction with this day.

You can contact Nicola Roxon online at tinyurl.com/ynofcs. Hepatitis C Community News March 2008 •

A Depression Story One woman’s experiences with hepatitis C and depression My experiences with depression began back in late 1979. I was in a violent relationship and subject to abuse and physical violence over a nine-year period. I am often asked why I stayed in this relationship, and the answers are simple, matching a number of stages as the relationship decayed:

this world, feeling as though I was living on another planet. I couldn’t function mentally, and I lost control of my life. My sons ended up confused, but tried to help me even though they didn’t understand what was happening to their mother.

The strange thing about this is that in 1989 I went to the doctor complaining of nausea and being

1. You love the person. 2. You think you can change them (a feeling that lasts for years). 3. You become frightened. 4. You fall out of love, and begin to hate. 5. You live in fear, try to leave, but you can’t get away because you are being stalked. 6. Eventually you find a way, and plan a route of escape. I left town in 1988. I managed to get away, but I was living with anxiety and depression. I saw a doctor who put me on an antidepressant. I was on these for six months, commencing a journey to get my life in order, and start over again with my two sons, aged four and six. It wasn’t until 2007 that I was diagnosed with post-traumatic stress disorder. My sons also suffered from a nervous condition. In 1993 I found a job I loved, helping others find work. This lasted two years, until two women I worked with decided to get rid of the manager. Because I didn’t agree with them, they set upon me. I was subject to workplace violence and harassment, and I ended up on antidepressants again. This time I had a nervous breakdown. I was put on Prothieden and Endep—high doses. I was out of Hepatitis C Community News • March 2008

I was on this medication for six years; I gained weight because of the antidepressants, which just added to the depression. I decided it was time to come off this medication and start again. The next downfall came in 1999. I was diagnosed with hepatitis C, a disease I contracted from my ex-husband, who was an injecting drug-user. From the beatings that he gave me, and the resulting exchange of blood, I had become infected with hep C.

tired all the time. I just didn’t feel right. She did blood tests but they didn’t show anything, so she eventually said that I was a hypochondriac and sent me on my way.

Are you happy with your GP? It wasn’t until I was diagnosed with hepatitis C and doing my own research that I found out the symptoms include nausea and fatigue, as well as depression.

From my own experience, antidepressants are a nightmare, but they should be taken if you need them, depending on the degree of the depression. When I had the breakdown, I definitely had to be on a higher dose. For people with a liver disease, like hepatitis C, half the recommended dose is applied. This is because antidepressants can be toxic to the liver. If you need to be taking these, research all antidepressants and find out all you can about them. Some have more side-effects than others.

If you are, we need to hear from you.* We are updating our Hep C-friendly GP list for metro and rural areas. Please call Deborah on 1300 437 222. *We approach GPs for permission before putting their names on our list, and we do not reveal who nominated them.

Linda

I now find myself trying to live with depression, but I have had to play around with different antidepressants in order to find the right one for me. I am on a very low dose—just 5mg—which I take every second or third day, just to keep the anxiety at bay. I have chosen not to be drugged up on antidepressants, and to try to learn to live with the depression. I have good days and bad days. I take each day as it comes and only do what I can on good days. On bad days I tend to stay home and wallow in my own despair—that way I am not having a negative impact on family or friends, and only see them when I am chirpy. Hepatitis C Community News March 2008 •

council news

Rural Tips Now Available GIT Network’s guide launched The Hepatitis C Council’s Getting It Together (GIT) rural network is proud to finally release a resource they’ve been working on since the middle of 2007. Tips for Living Well with Hep C in Rural South Australia might be a bit of a mouthful, but it describes exactly what this booklet is all about. Covering everything from finding a doctor, accessing treatment, family issues and sex to mental health, diet and exercise, alcohol and support networks, Tips is a vital resource for people living away from Adelaide. Launched in February, the resource was well-received by rural members of the Council. “It’s awesome! It’s to the point, clear, with no mumbo-jumbo.” “I wish I’d had this available to me when I first found out I had hepatitis C.”

“It’s a nice, small little booklet which you can put in your pocket—explicit without being too wordy, with lots of contacts and services and advice.”

“The section on shame, for example, is what we’re all about— resources like this help to dispel that shame.” “Rural health care workers often don’t know anything about hepatitis C, other than that it exists, and they can use this resource to inform people, and to get in touch with information sources. My doctor, who was good, still didn’t know about the Council or much else to do with hep C. A lot don’t even know that there’s a treatment available.” Contact the council on 1300 437 222 to get a copy.

RIGHT: The GIT team who created the new booklet TOP: Some of the information within ABOVE: Tips for Living Well... Hepatitis C Community News • March 2008

Biopsy! What it’s like to experience a liver biopsy John had his second liver biopsy at the end of 2007. Here we talk to him about this experience, and some of the other issues associated with biopsies and living with hepatitis C. Deciding to get a biopsy “It’s been 27 years—15 since I was diagnosed with hep C, and 27 since the incident where I reckon I was exposed. So 15 years ago I had a liver biopsy, which is when I was diagnosed, and I did a bit of research, and went to the hospital for a period of time, got all the testing done. “Then, after a while, I felt that going to a specialist hospital for three hours for a test where they tell you only a few things wasn’t really worth it. So I decided to go to my doctor, and I stopped drinking and started thinking more about my health.

“More recently, I was looking at all of this information about hepatitis C, and I began to re-evaluate what I probably needed to do for myself. I felt I might need to get a liver biopsy to see, after 27 years, what damage—if any—I had to my liver, and see what had happened in the 15 years since my last biopsy.” 1992: The first biopsy “I went to Clinic275 for some STD checks, and they had shortterm funding to test people who’d injected drugs. They referred me to the specialist hospital, and their suggestion was to have that biopsy. “The criteria to go on hep C treatment included liver biopsies then, and they also wanted to see what damage there was to my liver to decide what to do next. I was shocked to find out I had hepatitis C.

“With the information I had then, I still wasn’t convinced that treatment was what I wanted to do at that point. That shock of having hep C, and grappling with what it made sense to do next, was very hard. There wasn’t much information other than what doctors could give you. When I went to my doctor, who was fairly good, that was where I first heard about the HCCSA. “That first biopsy showed (in terms of the 0-4 fibrosis scale, where 4 is cirrhosis) that I scored a 1, which is only mild damage. That didn’t seem like a big issue.” 2007: The second biopsy “I went in to hospital after I’d decided that it would be really good for me to know what degree of liver damage I had so that I (continued over page)

A liver biopsy in process at the Flinders Medical Centre. Hepatitis C Community News March 2008 •

Biopsy! (Continued from previous page) could decide what my next step should be. “I was still not convinced that treatment was something I wanted to pursue. I’m still not sure now. But it was about getting the biopsy so that I’d have as much information as possible, and it might be that there was so much damage I needed to go on to treatment straight away. Or it might be that after 27 years it wasn’t bad, and maybe I’ll have another 27 years before I really need to worry, and maybe by then we’ll just be able to grow our own new livers! “When I went there they gave me a whole lot of tests and talked about treatment. They said I had an indicator for another type of hepatitis—autoimmune hepatitis— and that could lead to my body not recognising that it was attacking its own liver. The tests showed that in fact I didn’t have autoimmune hepatitis, but that was only clarified by my having had the biopsy.”

Preparing for the biopsy “Before my first biopsy, I had a real fear that I’d die. I’d either bleed to death on the table, or else come home and bleed to death that night. And I still felt a bit like that the second time. It wasn’t even that conscious—I could tell myself it wouldn’t happen, that the risk was really low. Then I talked to someone, and they told me that there’s extreme pain if you have a bleed, so you’ll be able to get help if it happens. It’s not a quiet thing where you suddenly keel over. Knowing that helped, in a way. “I wasn’t sure how immobilised I would be: one person told me you had to spend four hours with your hands behind your head, which wasn’t the case. But I wasn’t looking forward to having to just lie still for hours. I didn’t think it would be a good experience. On the other hand, I’d met the doctor, and he was a good communicator. “Having a background in this field, I wasn’t scared to ask questions or

refuse things. For example, they’d discussed there being two types of drugs I would be given before the biopsy. One of them makes you forget the experience, and the other’s a painkiller. I decided to refuse the one that makes you forget. “I was very sure that if I was having the biopsy, I wanted to be properly present and aware of what was happening; at any time I could say what I needed, rather than having other people be in charge. And then I found out that they actually don’t give that drug as a standard practise. The nurse who told me they did actually doesn’t go in to watch the procedure, so she didn’t know that. Because I knew I was going to be out of action for a little while, I also did more exercise beforehand.” B-Day “The process was scary—I still didn’t know what to expect, other than that there’d be a long wait. I had a two-hour wait between

The actual sample taken from the body in a liver biopsy. 1. Abdominal tissue 2. Liver tissue

Hepatitis C Community News 10 • March 2008

arriving and starting the procedure. I talked to my liver, reminding myself about why I was doing this— that though there might be pain, it was worth it to find out what was happening with my body. “The doctor then came down to do an ultrasound, to find out where to stick the needle in. It was good spending some time with the doctor beforehand. Then I was wheeled into another room, and while the doctor was great, telling me what was going on, the nurses didn’t speak at all, which was quite weird. “Then I had the painkiller, which was strange because I went from normal to being unable to think clearly and I couldn’t really speak, and there wasn’t any pain yet to deal with. “Then I could feel the needle going in, and it made me wonder why they used a painkiller rather than just the local, because the painkiller was a bit distressing. But the doctor kept talking to me, showing me what they would do, and it was over quite quickly. I hardly felt anything, almost no pain. In the recovery room afterwards I was still under the effects of the painkiller, which was still distorting reality a bit. I didn’t like that.

have it without feeling anything. And I’ve had hepatitis C for 27 years without really feeling any symptoms, so I wasn’t quite sure what the results would be—what liver damage did I have? I’d been expecting the worst, a little. “I found that I now have level 2 fibrosis, up from 1 in the test 15 years earlier, with very little liver damage. The indicators are that the progression isn’t rapid, and my ALT levels suggest any progression will be slow. So that means that, even though I’ve moved to the next level of fibrosis, things are actually pretty positive. “So now I have opportunities to make a decision. Knowing these results, the doctor has said that in the next two to three years it would be ideal for me to go onto treatment, and the lower the fibrosis levels the better treatment is likely to work. “But on the other hand, because I have genotype 1, I’m aware that I

only have a 50% chance of success at this point. “The other part of the decision is that in 3-5 years there are likely to be other forms of treatment— protease inhibitors—so if I have treatment now, will that bar me from the next generation of treatment if I need it? A fifty-fifty chance, to me, is quite low for all that you need to go through in 12 months of treatment. “So the biopsy has given me a realistic look at my options and opportunities. I still haven’t made my mind up over what to do next, but then the progression level is slow, so I have more time. I might develop cirrhosis at 76, but at that age there are other things to consider. “And it’s been heartening to know that the decisions I’ve made over the last 27 or 15 years have been validated quite a bit.” Interview by James Morrison

“Then you just have to lie there for a few hours to recover, and my partner couldn’t come in because it was a recovery ward. That was pretty disappointing, because it wasn’t good to be left by myself after all that, and I didn’t feel that people were communicating with me about what was going on. “I had the biopsy on the Wednesday, and I’d recovered by the following Monday. What it feels like afterwards is a bruise, so it can hurt when you move, as though somebody’s punched you really hard in the side.” The results “I got the results on the following Tuesday, and I’d been worrying about them. One of the things about cirrhosis is that you can Hepatitis C Community News March 2008 • 11

Turning Point The making of a short film about hep C The Hepatitis C Council has been involved in the production of Turning Point, a soon-to-bereleased DVD made by young people, and designed to educate other young people about hepatitis C natural history and transmission. We talked to Kerry May, who helped organise the young people involved, Sonja Vivienne, the filmmaker who mentored and edited the film, and the school students who were participants in the process.

Kerry May “I’m the co-ordinator for YAC-RAP (Youth About Changing Reputations and Adult Perceptions), and basically my role is to help young people to become involved, make sure they get to meetings, organise cars and food and that sort of stuff. But it’s also about helping young people to be able to work more closely with different services and agencies. “Through this project, I gained a greater understanding of the Hep C Council, and the really good stuff that you guys do. I was really impressed by your willingness to involve us in future events, expos, and that sort of thing, as well as

working on projects like this film. “We really want for young people to have all of the correct information about important issues like hepatitis C, which is what this film aims to assist. “Watching young people learn new, correct, informed knowledge and then seeing them talk to other young people about what they’ve learned; seeing them gain a lot of confidence, and seeing them connect into their schools, as well as wider communities, in a more powerful way—this sort of thing is really wonderful. You hear them talk so highly about the process, and the ideas they come up with are amazing, and they just learn so much. “The schools are going to be knocked over when they see this DVD—when they see what a group of young people can do. Some of these young people have found that school is not necessarily where they want to be, but projects like this help them stay in and see some use in attending school, as well as giving them more skills and knowledge. I’d love to see what we’ve been learning here become a part of the curriculum. “It’s been a fantastic experience for all the young people, and it has certainly built closer links between them, our program and the Hepatitis C Council, and between some of the students and their schools. And as I say, the schools will be blown away when they see this video.”

Sonja Vivienne “It was one of those calls from the blue—Nicci [from the Hepatitis C Council] just rang up. She had read an article about another project I was working on, called Family Values, about family structure in the queer community. I came in and did a brief consultancy from that, and she worked out that she had this other project that needed some film-maker’s insights and mentoring. So in the first instance Hepatitis C Community News 12 • March 2008

LEFT: Participants in the process: 1. Sonja Vivienne; 2. Kerry May; 3. The students from Birdwood, Heathfield and Mt Barker High Schools it was fairly vague. We had this group of kids, and a couple of months to work with them to create a short film, and how were we going to do it? “We looked at some of the difficulties involved in engaging a large group of young people, and how to give them the skills to create a good product in the end. I met with the group for a day and said, ‘Well, basically we’ve got six weeks, or four sessions, so how do we do it?’ I was quite inspired by the digital story-telling stuff, so the idea was to make a mockdocumentary from a personal perspective, and tell it through photographs and voice-over. “We used the video camera to record sound and voice-over, so they had some insight into how to use that, and through using the still cameras they got some ideas about how to get the coverage to tell the story, scene by scene—how to tell a story in a scene. So the fish-andchip-shop scene, for example: if you have one character here, and another over here, where do you want to be looking at the scene from? If any of them have an interest in continuing film-making, I hope this will give them a basis for going forth. “I guess the biggest thing was the storytelling aspects, and the need to find something that would resonate with their peers that wasn’t too boring; something upbeat and short enough to hold attention and stimulate discussion and get the message across. “I found it very enjoyable, I have to say. I’ve got a 6-year-old, so I’ve had to develop skills for staying on-task and making things fun—so times that by 11 or twelve! But it was also good being a little outside it. I could say at the beginning, ‘I’m here to help you guys make this, it’s not my film, so if you stuff around too much, it just won’t get done.’ I think not being a teacher gave me a different relationship with the kids in that regard. “The hardest thing, I guess, is to

work out how to keep everyone engaged in the project all the way through. You have some people who are really into it and committed, and some who are less so but who were keen to get out of class, so you have a pulling between those two groups. But you want everybody to have a go, so you can’t just give the kids who are really into it all the main jobs. “It’s similar to other work I’ve done before. I love seeing people come out of the end of the filmmaking feeling that they’ve got something to say, and that people are interested in what that is. When I look back at being a teenager, they were few and far between, those moments when anybody cares, and that can be a very defining thing. There’s a few of the participants where you can really see that impact, and others where you think you might have set something off that might not show up for a couple of years. I think they’re all very proud of the film, and that’s a bit of a buzz. “I didn’t know a huge amount about hepatitis C before I started this. I’d done work on safe drug use projects, so I knew about that aspect of it, but the natural history stuff was mostly new to me, so I had some research to do there, too. But because I was outside the process, in a way, I could be like the kids in asking those questions— what don’t people generally know? And also, with a film this size, you don’t want too many facts bogging down the narrative. That’s why it’s important to have an information pack to go alongside the film into schools and so on. “I’ve got a couple of other projects on the go, which you can read about at incitestories.com.au and at familyvalues.katalyst.com.au.”

The Students “When we first came up with the idea for this, we had a choice between doing a magazine or doing a film, and we thought a

film would be better for our age group—it’s more interesting than reading.” “We took surveys to find out what people knew about [hep C], then we started putting the ideas together. People didn’t know much. We asked our parents, science teachers, PE teachers—and they’re the ones who do the health lessons—and they didn’t really know anything.” “We didn’t know much either. Like, I got confused between the vaccination I’ve had for hep B and thinking there was one for hep C, which there isn’t.” “Yeah, I was amazed at how many people have hep C, and how many people live normal lives—it doesn’t affect them as much as you might expect.” “We didn’t realise how much work it would be. We were all like, ‘Yeah, this’ll be easy, making a movie!’ And then we realised how much work it was, and we only had five weeks.” “It’s rewarding to know we’re helping people. And it’s changed our opinions, too.” “And when Sonja gets nominated for an award, we want to be on the red carpet. We’ll be her entourage!” Hepatitis C Community News March 2008 • 13

Youth & CNPs Why don’t many young people use them? Recent research indicates that an alarmingly low number of young people access clean needle programs (CNPs). We talked to Danielle Bament at Drug & Alcohol Services South Australia (DASSA) about reaching out to young people. DANIELLE BAMENT: I work within the Harm Reduction Unit at DASSA, managing the Clean Needle Program. The CNP is a state-wide program that distributes free sterile injecting equipment, provides sharps disposal facilities and information and education on safer injecting to people who inject drugs, for the purpose of blood-borne virus prevention. Hepatitis C Community News: I know the actual figures are confidential, but can you discuss the general trends in young people accessing CNPs? DB: As is the case with many health areas, young people are under-represented in their access to CNP services. Young people who inject drugs are a particularly marginalised group, and one that is difficult to engage.

One of our main priorities within the CNP is to increase access to sterile injecting equipment for marginalised groups of injecting drug users. That includes Aboriginal people, homeless people and young people. HCCN: The most recent National Drug Strategy Household Survey, which recorded data in 2004, covered injecting drug use and young people. Are you able to say a little about that survey’s results? DB: The latest survey results reported that 0.4% of those surveyed had injected drugs recently (meaning in the last 12 months), while 1.9% of those surveyed report having injected illicit drugs at some point in their lives. The survey found that the highest proportion of injecting drug users is in the 20- to 29-years-old age group. [Editor’s note: you can read the 2004 survey at www.aihw.gov. au/publications/] HCCN: What is the importance of people accessing CNPs early

on in their use of injecting drugs? DB: There is recent research from NSW to suggest young injecting drug users and new initiates into injecting have very high incidence of hepatitis C. We also know from other data sources that young people engage in riskier injecting practices with regards to the sharing of injecting equipment. This emphasises the importance of ensuring access to the CNP amongst young injecting drug users, and among people initiating injecting drug use. However, this group is difficult to engage. HCCN: What’s the correlation between homelessness (particularly among young people) and injecting drug use? DB: The research on injecting drug use amongst homeless young people in Australia appears to be fairly limited. The data that is available suggests young homeless people have substantially higher rates of injecting when compared to young people who are not experiencing homelessness. We also have data to suggest that injecting in public places (such as toilets, squats, etc) is associated with riskier injecting practices, and people who report injecting in public are more likely to share needles and syringes than people who do not inject in public. HCCN: What model of CNP is run in South Australia? DB: We have two models of CNP service delivery in SA: the Pharmacy Scheme and the Community Scheme. The Community Scheme is a free service, while the Pharmacy Scheme is a user-pays service. The Community CNP scheme operates from a number of health and non-government services across the state, including

Hepatitis C Community News 14 • March 2008

The Dangers of DIY Piercing The downside of a trend through a number of youth services. It is CNP policy that we do not publicise the names of agencies participating in the CNP, as this can cause problems for those agencies. HCCN: So does the tendency of young people to feel invulnerable and to live in the moment make things a lot harder? DB: I suspect there are many reasons why young people are harder to engage in relation to the CNP, and that those reasons are more complex than simply a sense of invulnerability. The reasons are likely to be caught up with the fact that injecting drug use is an illegal activity, and young people fear being identified as engaging in this activity. CNP services are confidential and anonymous, but I imagine many young people who are new to injecting are not fully informed about the bloodborne virus risks from injecting, and about the services available.

Do-it-yourself at-home body piercing kits are becoming increasingly popular among young Australians. A significant number of people making use of them do so at ‘piercing parties’. At these events, several people take turns to give one another piercings—and this is where problems can begin. Every piercing leads to bleeding, and sharing piercing equipment when there is blood present means there is a very high risk of any blood-borne viruses present in one person being transmitted to other people. Hepatitis C is one such blood-borne virus. The Australian Society of Plastic Surgeons (ASPS) is demanding that tighter restrictions be put in place on the sale of these kits. They are concerned about the risks of blood-borne viruses and

also general infections, caused by the use of non-sterile piercing equipment. ASPS spokesman Dr Cholm Williams said that those who use these kits are “asking for an infection”. Tattooist and author Karen Hudson agrees. “Tattoos, piercings, brandings, scarifications and other body modifications are not do-ityourself projects. Why not? For the same reason that you will not find DIY instructions for surgery or any other similar medical procedure. Oddly enough, people seem to have no problem going to a professional for stitches or a root canal. But when it comes to sticking a needle through their body, the urge to do it themselves is irresistible!” More information can be found at tinyurl.com/29q55s

That is why we focus on having CNP sites in youth agencies where young people are already accessing services, and on providing outreach-based services that actively target marginalised populations of young people. HCCN: What would you like to see happen with CNPs in the short- and medium-term? DB: Our priorities in relation to the direction of the CNP are as I mentioned before. Importantly, better access for marginalised groups of injecting drug users, which includes young people. Other priorities include an increase in access to free CNP services after hours in metropolitan Adelaide, and an increase in the range of injecting equipment available for free through the Community Scheme of the CNP.

Tongue photo by Diego Medrano

Hepatitis C Community News March 2008 • 15

A Letter to People Without Hepatitis C Having hepatitis C means many things change, and a lot of them are invisible. It’s not like having cancer or being hurt in an accident: most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I’d still like to hear you talk about yours, too. Please understand the difference between ‘happy’ and ‘healthy’. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time—in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Please understand that being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralysed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, ‘sitting’, ‘walking’, ‘thinking’, ‘socialising’ and so on. It applies to everything. Hepatitis C Community News 16 • March 2008

That’s what hepatitis does to you. Please understand that hepatitis C is quite variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please do not take it personally. Please understand that getting out and doing things does not make me feel better. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, or try these classes, may frustrate me to tears, and is not correct. If I was capable of doing these things, don’t you know that I would? I am working with my doctor and physical therapist, and am already doing the exercise and diet that I am supposed to do. Also, hepatitis may cause depression, but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now. It can’t be put off or forgotten just because I’m out for the day (or whatever). Hepatitis does not forgive. If you want to suggest a cure to me, don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends

suggest one at one point or another. At first I tried them all, but then I realised that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepatitis, then we’d know about it. This is not a drug-company conspiracy—there is worldwide networking (both on and off the internet) between people with hepatitis. If something worked, we would know. If, after reading that, you still want to suggest a cure, then do it, but don’t expect me to rush out and try it. I’ll take what you said and discuss it with my doctor. In many ways I depend on you— people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too. You’re my link to the outside world. If you don’t come to visit me, then I might not get to see you. And, as much as it’s possible, I need you to understand me. Bek Oberin Bek Oberin is a local writer, more of whose work can be found at notdoneliving.net.

The Rhythm Exchange Project finds a heartbeat P.E.A.C.E, the multicultural arm of Relationships Australia, is currently working in partnership with the Hepatitis C Council of SA and the Vietnamese Community in Australia SA Chapter Inc on the ‘Rhythm Exchange Project’. This is primarily a music project which aims to provide participants with an opportunity to develop skills in hand-drumming and other instrument tuition. It’s also meant to create an opportunity for a group performance at the community launch of the first World Hepatitis Day in May 2008. Other benefits of the project include the strengthening of relationships between the partner organisations, and between the Hepatitis C Council and the participating communities.

sessions with Vietnamese, Sudanese and Afghani communities. Each of the groups are exploring their personal music interests and identifying other instruments they’d like included in the project. These sessions have been organised and supported by the Rhythm Exchange team which includes Hepatitis C Council educators Leslie Wightman, Maggie McCabe and John McKiernan, P.E.A.C.E project officer Lola Aviles and community educators Zia Abrahimzadeh and Yuggu Sebit, and Vietnamese Community in Australia worker Hoa Nguyen.

program, which has allowed the project to employ Robert Petchell and both of the drum tutors.

council news

The Sound of Drums The final performance will take place on Saturday 17 May, from 2pm to 4pm in Theatre 1, at the Parks Community Centre. Keep your eye out for further information, as this is really evolving into an exciting community project which will culminate in a dynamic community performance. For further information about the project contact, please Leslie Wightman or John McKiernan on 8362 8443.

This project has been made possible due to a grant from the ‘Health Promotion through the Arts’

During February, musical director Robert Petchell and drum tutors Anne Harrington and Phil Jones have been facilitating come-and-try

The Hep C and Me Survey The Hepatitis C Council of Victoria wants you! We want to know what you want to know! This year, in the lead up to Hepatitis C Awareness Week, the Hepatitis C Council of Victoria is conducting a nation-wide survey (the Hep C and Me Survey) to see what Australians understand about hepatitis C and what they think the most important issues are. They need 1000 people from all walks of life to complete the survey regardless of whether or not they have hepatitis B or C. The HCCV will use the information they collect to plan better programs and campaigns, petition governments for better services, and to better understand the views of the communities we work with. Visit www.hepcvic.org.au to take the Hepatitis C Survey 2008. It should take no more than 10 minutes and is completely anonymous. Spread the word! Hepatitis C Community News March 2008 • 17

council news

HCCSA Library News Judy Campbell looks at the latest developments and newest acquisitions. If you walk into our library now you will notice a few changes. We have a new lockable cabinet for DVDs, videos and tapes, and more desk space for those needing to sit down and work. The video unit has been moved to a more convenient location. We continue to add more books to our collection, and a list of some of those ordered in the recent past is listed below. A full list can be obtained from the library. Joy, our librarian, is constantly updating and archiving material; a never-ending job.

New Acquisitions A Double Wammy: Living with a bleeding disorder & Hep C. Haemophilia Foundation Australia. 2007 GP Plus Health Care Strategy: Dept of Health. August 2007 HIV/AIDS, Hepatitis & Sexually Transmissible infections in Australia. NCHSR 2007 Speak Up! Responding to everyday bigotry. Southern Law Centre. 2005 15th National Symposium on Hep B & C. St Vincent’s Hospital. 2007 National Hep C Testing Policy. Hepatitis C Subcommittee of the Ministerial Advisory Committee on AIDS, Sexual Health & Hepatitis.

Hepatitis C Community News 18 • March 2008

Journeys in Healing: How others have triumphed over disease and disability by Dr Shaun Matthews. Finch Publishers, Australia & NZ: 2003. This book is in two parts. The first part is a collection of very human stories from a group of people dealing with serious, sometimes life-threatening diseases. “Dr Matthews is one of the current wave of doctors establishing a new paradigm for medicine,” writes Dr Ian Gawler in his foreword. A memorable quote comes from Matthews himself: “You can see your health issue as an opportunity or a curse. You can use your condition either to grow or to become totally self-absorbed and indulgent.” The second half of the book is based on ‘What we can learn’. The topics are: getting proactive; living with a serious illness; the road to recovery; healing as learning; healing the whole person; and the gift of illness. From my personal experience of living with chronic ill-health, I know how important it is to have a life-long commitment for maintaining wellness. I can strongly recommend this book as a very helpful aid in achieving this.

Useful Contacts & Community Links Hepatitis C Council of SA Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. Call the Councilâ&#x20AC;&#x2122;s Info and Support Line for information on (08) 8362 8443 or, for rural SA callers, 1800 02 11 33 (freecall). MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds. (08) 8223 4566 Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic. (08) 8223 5011

Clean Needle Programs To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340 Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809 SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 1699 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666

Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program. (08) 8447 8821 The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443. Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities. (08) 8362 0395 AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611

Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services. The Council offers a meeting room suitable for workshops, presentations, formal and informal meetings. It is a spacious area suitable for up to 30 participants.

Meeting Room Hire at the

The room has modern, self-contained kitchen and bathroom facilities. It also contains an electronic whiteboard, and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability). Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.

Community members affected by hepatitis C are encouraged to use the room at no cost.

Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au Hepatitis C Community News March 2008 â&#x20AC;˘ 19

Become a

member

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. A strong membership of people affected by the virus is essential to our work. Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071 or fax: (08) 8362 8559.

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Membership type Individual Membership  FREE! Professional Membership  FREE! For information on Organisational Membership, please contact us.

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*GST does not apply. Donations over $2 are tax deductible. Signature: The Hepatitis C Council of South Australia Inc. is aware of the need for privacy and endeavours to comply at all times with the Privacy Act 2001. As such, any information provided by you is accessed only by authorised personnel and will remain strictly confidential. To change or access any personal information we hold about you, please write to the Manager at the above address. ABN: 38 030 552 547 Tax invoice – please retain a copy for your records.

Proudly supported by: Hepatitis C Community News 20 • March 2008