#32 Hep C Community News

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Community News

Autumn 2006


STAFF Manager: Danny Gallant Senior Administration Officer: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Lyn Joan Steve Liz Will Education and Development Coordinator: Kerry Paterson Metropolitan Educator (Community Programs): Sharon Drage Rural Education and Support Officer: Leslie Wightman Metropolitan Educator: Nicci Parkin Getting It Together Program: Michelle Morrison Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Claire Maggie Gail Phil Lyn Publications Officer: James Morrison Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood Treasurer: Barbara Williams Senior Staff Representative: Danny Gallant Ordinary Members: Leslie Dunbar Enaam Oudih Carol Holly Nick Taylor Anthea Krieg

Useful Contacts & Community Links

Much of this edition is given over to some of the interesting news and stories which came out of the 5th Australasian Viral Hepatitis Conference, which was held in Sydney in February. The theme of this year’s conference was improving access to knowledge, prevention, resources and treatment and selected highlights are brought to you beginning on page 2 of this edition. The Federal Minister for Health, Mr Tony Abbott, launched the conference with the much-welcomed news that as of 1 April 2006, liver biopsy will no longer be one of the criteria to receive standard antiviral therapy. By removing this barrier to accessing treatment, it is anticipated that the very low rates of treatment uptake will be increased, and—importantly—the long-term health of many people living with hepatitis C will be improved. Several staff and community members were present at the conference and shortly after returning from Sydney the council hosted a conference feedback forum at Nunkuwarrin Yunti for interested members of the workforce and community. With over 50 people in attendance, the council was given a clear indication that this sort of information-sharing forum is valued in South Australia, and we should continue to provide them. You can view the feedback forum presentations on our website at www. hepccouncilsa.asn.au.

Hepatitis C Council of SA Provides information, education, support to the hepatitis C community and those at risk of infection. 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 Council’s Hep C Info and Support Line for information on (08) 8362 8443 or, for rural 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 culturally and linguistically diverse backgrounds. (08) 8223 4566

If you’d like to submit a letter, an article or just make a suggestion to the Hepatitis C Community News, please write to the editor at PO Box 782, Kent Town, SA 5071 or email to newsletter@hepccouncilsa.asn.au. The copy deadlines and publication dates for the rest of 2006 are: Winter 2006: deadline 28 July; published 21 August Spring 2006: deadline 3 November; published 27 November

Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander people. (08) 8223 5011

About the Cover: Celebrations abound over the removal of liver biopsy as a prerequisite for hepatitis C treatment. Artwork by James Morrison.

Contents Australasian Viral Hepatitis Conference 2 What Injecting Drug Users Don’t Understand... 3 The Prison Problem 4 Stigma & Discrimination News 1 1 6 7 9 11 11 12 12

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.

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 169 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780

The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can recieve 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 men, 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 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666

A Day on a Hepatitis C Info Stall

The End of Biopsies? Election Survey New Riverland Nurses HeplinkSA Launched Refugee Health Planning Day RNA Interference Narrative Theatre Getting It Together Update Youth Expo

Other Features 8 Resuscitating Troubled Lives 10 Hepatitis B & C Co-infection

Clean Needle Programs To find out about programs operating in South Australia, contact the Alcohol and Drug Information Service. 1300 131 340

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.

Cartoon: James Morrison

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk.

About this Issue


As we foreshadowed in our last edition, Federal Health Minister Tony Abbott has announced that liver biopsy will no longer be a criterion for receiving Medicarefunded treatment for hepatitis C. This came into effect on 1 April 2006. It is expected that the removal of liver biopsy as a requirement will substantially increase uptake of treatment for Australians with hepatitis C.

• are using effective contraception, and • have not previously undergone ...a course of subsidised interferon ...therapy.

The main reason for people with hepatitis C to have a liver biopsy is to diagnose the severity of liver damage. Until now, if you had hepatitis C and wanted to undergo subsidised treatment, you needed to have a liver biopsy. Now, however, people with hepatitis C can get subsidised antiviral therapy as long as they: • are at least 18 years old, • are not pregnant, breastfeeding, ...or with a pregnant partner,

As the Australian Hepatitis Council’s executive officer, Helen Tyrell, has said, “liver biopsy can be a painful procedure and it carries inherent risks. Some people who clearly need treatment have

been very reluctant to undergo the procedure, and therefore were unable to access treatment. The more people who can get treatment, the greater the quality of life for all people with hepatitis C, and the closer we come to successfully managing this growing epidemic.” Now that a biopsy is no longer needed, the number of people eligible to access treatment for their hepatitis C is expected to triple. Helen Tyrell said that “removing liver biopsy requirements [is] a significant advance in the fight against this growing public health epidemic. We welcome and support this decision.”

community news

Biopsies Cut Out

If you would like more information about accessing treatment for hepatitis C, please contact the council’s Info and Support Line on 8362 8443 or 1800 021 133 (Freecall for regional SA).

Strong Response to Election Survey In the run-up to the recent SA state election, the Hepatitis C Council of South Australia surveyed all sitting members and candidates in marginal seats to find out their views on the way forward for hepatitis C policy in this state. We welcome the results of this survey, which demonstrated bipartisan support for the development and implementation of a state Hepatitis C Strategy. “The Hepatitis C Council is delighted that 96% of respondents, including representatives of both major political parties, supported the development of a South Australian Hepatitis C Strategy” said council manager Danny Gallant. “There are over 13,000 South Australians with hepatitis C, and high-level government leadership is essential to combat the epidemic. We welcome the commitment all respondents made

to maintaining the partnerships with communities most affected by hepatitis C.” SA is the only remaining state without a hepatitis C strategy or action plan. Australia was the first country in the world to develop a national strategy, but the strategic response at a local level has stalled in recent years. Given the strong and unequivocal response from all parties, the Council expects a State Hepatitis C Strategy to be developed, launched and implemented in the next parliamentary term. Survey respondents also showed an interest in increasing treatment uptake, reducing discrimination and increasing public awareness of the virus.

who are of particular relevance to members of the community affected by hepatitis C are John Hill and Gail Gago. You can contact them by phone or email with any concerns you have about hepatitis C policy in SA. John Hill: Minister for Health kaurna@parliament.sa.gov.au Phone: 8207 1855 Gail Gago: Minister for Mental Health and Substance Abuse, and the Minister Assisting the Minister for Health gago.office@parliament.sa.gov.au Phone: 8237 9100

The two ministers in the new majority Labor government Hepatitis C Community News Autumn 2006 •


In February, the 5th Australasian Viral Hepatitis Conference was held in Sydney. This brought toegther a large number of people who work and live with hepatitis to share the latest discoveries and developments across Australia and the world. In April, the Hepatitis C Council of South Australia held a Feedback Forum in Adelaide, where information from the conference, along with new, local developments, was presented. Over this and the next few pages, we present some of the highlights from these two events.

What Injecting Drug Users Don’t Understand about Hepatitis C Adapted from a presentation by Emma Black, Susannah O’Brien, Carolyn Day, Clare Thetford and Kate Dolan Given that around 80% of Australians who have hepatitis C contracted it through injecting drug use, it’s important to find out what the members of this group do and don’t understand about the virus. A team from the National Drug and Alcohol Research Centre at the University of NSW are doing just this. Their study is measuring injecting drug users’ knowledge and understanding of hepatitis C and a number of related issues, such as virus transmission, symptoms and clinical markers of the virus, and hygiene/blood awareness issues.

their reused syringes. In addition, 11% reported using a needle or syringe after someone else in the previous month. The use of injecting equipment after another person was also quite common— 40% shared spoons, 35% the drug solution, and 33% the water, for example.

Hepatitis C Community News • Autumn 2006

From the results of these tests, 73% of the participants believed they were hepatitis C positive, while 4% believed they had once been so, but had now cleared the virus. Another 1% were tested but never got the result. The questionnaire uncovered significantly high rates of ignorance about a number of fundamental facts concerning hepatitis C—ways in which the virus can be transmitted, detected and treated. There are several key problems which arise from these misconceptions. Almost a fifth of the participants had hepatitis C, but believed they could not infect other people, and almost as many thought they themselves were immune to hepatitis C. A significant number of others weren’t sure whether hepatitis C could be passed on to others.

The study is based on interviews with 149 injecting drug users across inner-city, suburban and regional sites. A detailed and carefully designed questionnaire was also created for the participants. To be included, participants needed to have injected drugs at least once per month in the last six months. They could be hepatitis C positive or negative, or uncertain of their hepatitis C status. Significantly, given the results, 59% of participants rated their hepatitis C knowledge as ‘good’. The study uncovered significant risk-taking behaviour in those injecting drugs. 52% reported reusing one of their own needles or syringes in the previous month, while 85% reported never cleaning

a similar number recalled post-test counselling. 13% had a PCR test in the past year, while 15% did not know whether they had or not.

When it comes to being tested for hepatitis C, 99% of participants had been tested at some point. Just over a third of participants recalled pre-test counselling, and

The preliminary results of this study demonstrate that there are a number of popular misconceptions which need to be corrected. The most significant are those concerning the re-use of injecting equipment, sexual transmission of hepatitis C, immunity and antibodies to the virus, and the effectiveness of hepatitis C treatment. For more information, visit http://ndarc.med.unsw. edu.au/ NDARCWeb.nsf/page/Reports to request a copy of the report.


The Prison Problem Adapted from a report by Anton Colman, Clinical Nurse Consultant at the Royal Adelaide Hospital One of the most significant events in the prison discussions at the Australasian Viral Hepatitis Conference was actually a nonevent. Professor Bob Batey was scheduled to launch his report, ‘Hepatitis C prevention, treatment and care in prison populations’, at the conference, but was unable to do so. Professor Batey, who chairs the committee which drafted the Federal Government’s second national strategy for tackling Hepatitis C, was interviewed last year on the ABC’s Lateline. When asked about the state of hepatitis C in Australian prisons, he said, “I think it’s a disaster. It really is something that we’ve been wrestling with now for a number of years as to how best to try and decrease the rate of spread … a lot of these people will cycle back into the community, and if they’ve become hep C positive within the jail, they’re going to then become another source of potential infection in the non-jail community … a needle exchange program in prisons is ideal but not realistic.” The launch of the report is now likely to be mid-year. However, Professor Batey was able to discuss some recent developments. He noted that two prison liver clinics were operating in the Hunter region of NSW, and that these clinics had seen 213 patients over a 5-year period, with 48 biopsies

being undertaken (this was before the liver biopsy rule changes--see page 1). The problem was that only a minority of these patients were able to access treatment. This was unfortunate, as the adherence to treatment protocols was actually very high for those prisoners able to be looked after. A system was introduced where prisoners being treated could be put under a ‘medical hold’, which prevented them from being transferred to another prison where the drugs were not available. However, Professor Batey said that all prisons now have treatment drugs, so prisoners can be transferred freely. Another review, by L. Boonwart, noted that 10 prisons in NSW now had liver clinics. These clinics had reviewed over 1,000 patients, and had treated 175 (48 with pegylated interferon). A presentation by Professor Andrew Lloyd on ‘Enhancing Hepatitis C prevention, treatment and care in prison populations’ discussed some of the alarming statistics that have been collected. His review was again based on NSW, and noted that 53% of male prisoners and 74% of female prisoners have hepatitis C. Furthermore, three quarters of injecting drug users who end up in prison continue to do so inside, and 80% of them share injecting equipment, which facilitates the spread of the virus. Vanessa Read, the blood-borne virus consultant at the Western

Australian Prison Health Service, discussed her state’s ongoing education programs in prisons. She commented on the fact that community-based programs can’t simply be transferred to a prison environment, but have to be created anew to take account of the realities of prison life and prison policies. Ms Read also noted the need to deal with the diversity of the program’s intended audience, especially given the large number of Aboriginal prisoners and their widely differing backgrounds. Ms Read said that prison officers typically fear what the training is about, seeing it initially as an attack. However, when it is discussed in terms of protecting the officers from hepatitis C, there is a dramatic turnaround in attitudes. Education of prison officers has now become mandatory, and is widely promoted. As for the prisoners, there has been an increase in requests for testing, an increase in follow-ups with health centres, and more reports of prisoners sharing the information they have learned with their family members. Anton Colman’s own summary of the prison presentations was that it was all a little ‘NSW-centric’, and that the concept of needle exchange programs in prisons` seemed to have gone into the toohard basket. He said a national hepatitis C and prisons workshop or conference is needed.

Below: A number of those who presented their findings, reports and personal experiences at the Adelaide Feedback Forum in April, including u Michelle Morrison (see page 4), v Anton Colman (see this page) and w Kerry Paterson, who launched HeplinkSA (see page 7).

u

v

w Hepatitis C Community News Autumn 2006 •


Stigma & Discrimination While my personal experiences have given me a pretty good grasp on the subject of stigma and discrimination, I felt the topic warranted further investigation to do it justice. To that end, I looked up these terms in the dictionary. This gave me the following definitions:

Stigma: (NOUN) a mark or token of infamy, disgrace, or reproach: A small mark; a scar or birthmark, a mark or characteristic indicative of a history of a disease or abnormality. Discrimination: (NOUN) treatment or consideration based on class or category rather than individual merit; partiality or prejudice: racial discrimination; discrimination against foreigners etc. A very impartial and, of course, literal assessment, but I it found lacking in its rendering of the very human experience of the bias and unfair treatment encountered by those with hepatitis C—behaviour, I have found, that really comes down to a basic lack of knowledge and, therefore, understanding. When first asked to speak on this topic I was forced to examine my own behaviour in the past, and I have to admit that I, myself, have been guilty of stigma and discrimination in relation to hep C. When I talked about it, if I talked about it, hepatitis C became ‘liver disease’, and I would not elaborate further than that. The very few of those close to me that I

had attempted to tell reacted with alarm. One (and this person had worked in health care) reacted using overthe-top terms such as ‘epidemic’ Hepatitis C Community News • Autumn 2006

and ‘incurable’ when the topic arose. Another asked me, “Did you get that from your Gay friends?” You can imagine that these negative reactions led me to hold back from further disclosure. But I really can’t blame them; not having understood hep C myself at the time, I could hardly explain my condition to others. It wasn’t until I was forced to deal with my hep C through treatment that I started to go into more detail with those close to me. However, I made a point of stating that I had likely contracted it through toothbrush and razor sharing, not needle sharing, and that I had never used intravenous drugs. I wanted to distance myself from how a majority of those with hep C have contracted the virus. As though that made me more worthy in my mind—I was an ‘innocent victim’, which of course implied that anyone else infected with hep C in another way was, in some respect, guilty. I’m not proud of my behaviour. Most of it was motivated by my own lack of knowledge about my condition, and fear of others’ reactions because of that. There is still so little known by the general public about hep C, and what is out there is usually misrepresented or misconstrued. Hepatitis C is mentioned in alarmist terms. Words used such as ‘taboo’, ‘epidemic’, ‘carrier’, and ‘highrisk’ are all expressions that work toward fuelling negative images. The mainstream media seems to be working against bettering this situation through their own failure to present the facts or even correct errors when they have occurred. There have been some glaring examples recently. The movie Bewitched was most deservedly nominated for a ‘Razzie’ as worst picture of 2005. In the movie a predatory womaniser is being taught a lesson through magic to not hit on young

Cartoon: James Morrison

Speech by Michelle Morrison presented at the Viral Hepatitis Conference


attractive women half his age. Every young thing he attempts to chat up says something to turn him off, one of particular note being, “I have hepatitis C.” What I heard around me in the theatre was not laughter but questions. “What the heck is hepatitis C?” asked one patron. “I think it’s a virus,” was the response. This line in the movie, found not at all funny by the viewing audience, as well as confusing, was also a completely inaccurate implication that hep C is contracted through sexual contact. There was no response by those showing the film to even attempt to take the opportunity to educate their patrons with the correct information. Another example is the popular medical TV program House. Now don’t get me wrong, I love this show, and it did portray—through the reactions of the characters—a good look at the discrimination of people with marginalised diseases like hep C. In the show a patient was diagnosed with hep C. His brother was concerned about anyone finding out in case they thought his brother was gay or on drugs. They both came from a macho culture where such a thing would be something to ostracise his brother for (it turned out he was gay). As well, in the process of explaining how hep C was contracted, one of the doctors stated that hepatitis C involved “the exchange of bodily of fluids”. I understand that in America, hep C is still considered a sexually transmitted disease (despite evidence to the contrary) but, being screened in Australia, the network broadcasting the show failed to use this opportunity to educate the public. At the very least they could have provided contacts for the AHC at the end of the program, much in the same way that contacts for missing persons units are shown at the end of the TV show Without a Trace on a rival network.

It is this insidious misinformation that makes people like my peers and myself reluctant to share our stories, to educate our families, friends and associates, for fear of being marked unclean, to have to wear a big red C on our chests, to have to hide and live away from the rest of the population… OK, I do digress into the dramatic. But the fear of mistreatment is very real, because the experience of mistreatment is very real. This in itself discourages people from seeking help. Incorrect or incomplete diagnoses can be left unchecked and can lead to unnecessary discriminations and recriminations. This experience is magnified for those in rural or other isolated communities. I have, through my involvement with the Hepatitis C Council of SA’s rural project (Getting It Together), been privy to some appalling examples of ill-treatment. One person’s experience involved the taking of blood for testing. The nurse taking the blood was not using universal precautions. That person felt compelled to disclose their status, so that the nurse would protect herself. The response? A tirade of criticism: why wasn’t it clearly marked on her paperwork, why wasn’t the test taken in a hospital, why wasn’t she told sooner? The person was left feeling it was their fault the nurse was at risk. Another person was diagnosed around 12 years ago through a blood test from her local GP, which just showed as antibody positive for hep C. She had been having regular 6-monthly blood tests since that time, but was never informed of the PCR test and that it would provide a more thorough diagnosis, until her involvement with the GIT project. Now, having finally had a PCR test, she has now been told (by a receptionist over the phone, no less) the test result is negative, which means that the virus would have cleared

a significant time ago, and that she has been living with this halfdiagnosis for at least 10 years too long! Others have been refused services, medication, or treatment because of having hep C and the misinformation and bias that abounds. Most, however, foist this upon themselves because of their lifestyle, past history or choices, feeling unworthy of proper care and respect, deserving of maltreatment; feelings that may have drawn them to the unsafe practices in the first place. The most frustrating issue is that access to medical care, or any care for that matter, should not be dependant on how a disease is contracted, or even that any one person is more worthy than another for proper attention. The approach should be universal. Had I had more knowledge of hepatitis C at the time of my diagnosis, I would have had a very different experience of it. I would have reacted differently, behaved differently, felt differently. I would have educated rather than shut down, and I would have got off my bum a lot sooner to share my story to get information out there, because that is what I feel needs to be done to improve understanding. The profile of hep C needs to be raised, so that it is not just a throwaway comment in a movie or a TV show. It should be recognised as a real condition, affecting real people, who are deserving of your attention! I realise it is a big ask, but more of us need to speak up, more of us need to share our experiences and stories, more of us need to say we are worthy and accept nothing less than proper care—enough is enough! It is time to be heard and seen and understood.

Hepatitis C Community News Autumn 2006 •


community news

Riverland Nurses There will soon be a considerable improvement in support for people in the Riverland who are living with hepatitis C. Two skilled nurses, Sandra Crockett and Emma Thomas, have just completed specialist training in hepatitis C issues at the Flinders Medical Centre, and will be running a fortnightly or monthly clinic at the Berri Regional Hospital. The need for Sandra and Emma’s services is easy to demonstrate. With a population of roughly 35,000, community prevalence rates suggest the Riverland is likely to have more than 350 people who have hepatitis C. Yet only a handful are undergoing treatment—less than 10 each year, in fact. There are several reasons for this. The most significant is the fact that the Riverland is still a relatively small, interconnected community. The average resident has much more contact with, and knowledge of, those who live in the same town than someone who lives in suburban Adelaide. As Sandra noted, “In a town of 5,000 or 8,000, you know what family goes where, whose kids are friends with whose, or sleeping over at whose house, so there’s much less secrecy.” This means that people are often scared about how they might be treated if their hepatitis C status became known. They decide to access services in Adelaide, or, more frequently, get no treatment at all. With a regular Riverland clinic becoming available at the hospital, people living with hepatitis C will be able to seek information and treatment in a safe, friendly and familiar environment. “It’s not as though there will be big signs up saying ‘Hepatitis’,” Sandra explains. “For example, I also do a clinic for diabetes patients. People could be coming in to the hospital for any reason.” The Hepatitis Council, through the Getting It Together project, knows how important it is for people

Hepatitis C Community News • Autumn 2006

in regional South Australia to be able to make choices about where they go for information, help and treatment. Some who live in the Riverland will choose to attend the local clinic, while others will prefer to go to Adelaide. The Riverland hepatitis nurses are the first in this kind of role in South Australia. “It’s a pilot programme,” Emma says, “so it has plenty of potential to be developed. Maybe, down the line, there’s potential for a community program—going to people’s homes, rather than having them come in to the hospital.” This will depend on future funding, of course, but there’s no denying the value and importance of such services. Having experienced local nurses who understand the community and the specific problems connected with hepatitis C is extremely valuable. What drew the nurses to this work? Sandra has a background in infection control, and has worked with all the types of hepatitis in the past. When she heard about the program she volunteered, and approached Emma, who was also enthusiastic.

They came to Adelaide to train with Robyn Gilligan (clinical nurse consultant at the Flinders Medical Centre) and Rosalie Altus (clinical nurse at the Flinders Medical Centre). Both Emma and Sandra thrive on nursing work which is quite difficult, but which also involves a lot of one-on-one interaction. “People need GPs and nurses in their own area,” they point out. “Even if you are able and willing to come down to Adelaide for hepatitis treatment, what about everything else? What if you need medication for another condition, and that medication might affect your liver? You simply can’t come to Adelaide for every GP appointment or whenever you have a question.” The Hepatitis C Council of SA warmly welcomes Sandra and Emma, and wishes them every success. We also encourage other regional health services to follow the Riverland’s excellent example. You can contact the Berri Regional Hospital on (08) 8580 2400.

Left to right: Rosalie Altus, Sandra Crockett, Emma Thomas, Robyn Gilligan Backdrop: The Riverland, from Waikerie in the west to Renmark in the east


by Doug Mellors On Monday 6th March 2006, Shaun McCausland died of liver cancer in the Mary Potter Hospice. His funeral two days later was attended by his family, his friends, colleagues and a small group of people from the Hepatitis C Council of SA—mostly staff. Shaun had been struggling with the symptoms of end-stage liver disease for some years, so his death would not have been a great surprise to many of those who knew him. Shaun was well known to people with HIV/AIDS in his role as activist, but almost unknown to people with hepatitis C. He was only 48 when he died. He was a wiry little man, highly intelligent, practical, ethical and tough-minded. He was also compassionate. The main reason for him being little known in hepatitis C circles was partly due to illness, but also due to his dislike of any kind of praise or adulation. I first met Shaun in 1997, at a time when the Hepatitis C Council of SA

was going through a crisis which had the potential to jeopardise our funding. At that time I found myself in the unenviable position of trying to run the council with one very new staff member and a small group of volunteers—I was a member of the committee in those days. I was confident about handling queries regarding hepatitis C, but had almost no knowledge about how to run the administrative side of things. As far as I recall, Shaun had no prior knowledge of our dilemma, and had simply dropped in on a visit. When he had taken stock of the situation he offered to help us get the administration running again, and after being approved by our funding body, that is what he did. It took him about two weeks. He did the job rigorously, perfectly, without any complaint or any fuss, and without being paid. When the staffing issue had been resolved he disappeared and was not seen again until many months later, when we had to seek his advice on another problem.

As I got to know Shaun better over the years I discovered what he had done for the Hepatitis C Council was not atypical. In fact, he had become an expert at sorting out other people’s nightmares, discreetly and without taking any credit for himself.

community news

A Tribute to Shaun McCausland

Shaun was a mentor to many people, including myself—he was still giving me sound advice even towards the end, when he was struggling with encephalitis. Had his illness not cut his career short, I am sure he would have become one of the finest surgeons in South Australia. One of Shaun’s favourite words was ‘integrity’; easy to say, hard to live by, but he did, and I think for that reason whatever career he had chosen his work would have been dedicated to the same values of helping people and preventing the powerful from crushing the weak. I hope this small tribute to him will at least partially, albeit posthumously, redress the balance of the debt of gratitude that we owe him as a community.

HeplinkSA Launched A new and important forum has been launched for healthcare providers who work with people affected by hepatitis C. This is HeplinkSA, and it’s designed to keep these professionals in touch with one another, and with the latest developments in hepatitis C treatment. Kerry Paterson, part of the education team at the Hepatitis C Council of SA, is the moderator of the group. “Many healthcare workers often feel isolated working with hepatitis C, or else struggle with hepatitis C knowledge as it isn’t their core business. HeplinkSA aims to provide a way to network, share experiences and knowledge amongst workers in the field to support them in their work.” In its initial stages, HeplinkSA will hold quarterly meetings in Adelaide.

These meetings will highlight topics of interest nominated by members. Between meetings, HeplinkSA will operate an electronic mailing list. HeplinkSA will replace the Hep C Network, which fulfilled a similar but more limited function. Membership of HeplinkSA is open to all those in South Australia who deal with issues related to hepatitis C as part of their work. Obviously this includes healthcare workers, but it’s open to everyone who works with those who have, or are affected by, hepatitis C. HeplinkSA will have a self-nominating, rotating steering committee drawn from the group’s membership. They will guide the project, evaluate activities and make decisions about funding. Anyone interested in joining the steering

committee is warmly invited to approach the council. To join HeplinkSA, email kerry@ hepccouncilsa.asn.au and say you’re interested. When your membership has been accepted, a full invitation to join will be sent back to you. The first HeplinkSA steering committee meeting was due to be held just after the time of writing, while the next meetings are on 8 August and 14 November. The first two quarterly forums for members will be held on 11 July and 3 October. HeplinkSA will be a valuable and rich source of information and support, so if you would like to contribute and benefit, please get in touch. Hepatitis C Community News Autumn 2006 •


community news

Resuscitating Troubled Lives Hồi Sinh means “to resuscitate, to restore life”. That’s what Nguyễn Mộng Lan (Lan Nguyen) and her team of social workers do for the traumatised, disadvantaged and disempowered in their community. Lan, who is Director of Welfare Services at the SA Chapter of the Vietnamese Community of Australia (VNCA), chairs the HồiSinh committee, a forum for workers in drug and alcohol related sectors, looking at issues ranging from drug treatment and hepatitis C to alcohol education among older people. The humble surroundings of Lan’s workplace belie the quality and volume of services provided by VNCA (SA)’s social workers to the local Vietnamese community. The very ordinary-looking Kilkenny house with its add-on sheds is usually bustling with activity. VNCA (SA) has 16 permanent and seven casual workers running programs in age care, family support, gambling rehabilitation, alcohol education, needle exchange, drug treatment, police drug diversion, community settlement services and youth outreach. Nguyễn Mộng Lan has seen the organisation’s services change and grow in her eight years there. “It was very challenging when I started because the Vietnamese community here didn’t know much about drug issues and wasn’t doing much to support those affected by drugs,” she recalled. “The Hồi Sinh committee which was already established when I started at VNCA (SA), was functioning more like a crime prevention committee.

Adelaide Hepatitis C Community News • Autumn 2006

“There was a lot of fear and stigmatisation. The only contact we had with drug users was with those who were using our other community services. There was little interaction with drug users and our workers were even afraid of them, afraid to let them hang around in the office.” Lan initiated VNCA (SA)’s drug and alcohol services project with a small grant from Health Promotions SA. “We had a grant of $5000 for a community conference and another $20,000 for a peer educator program. But from the meeting, I could see that the community was not ready because we had no information and contact with drug users.” After hearing from a Sydney Vietnamese community street worker who was invited to speak in Adelaide, and Steve Alsop, Director of Addiction Studies from the Flinders University, VNCA (SA) decided to shift the program’s emphasis from peer educator to street work. “We needed to first raise the community’s awareness of drug issues,” Lan said. The result was the partnership between the Parks Safety Network and VNCA (SA) in developing a Street work

program. Lan came to Adelaide 20 years ago because her family was blacklisted in Vietnam. She chose to work with the Vietnamese community because she understood the refugee experience. “When I made contact with the young people in the Vietnamese community, I realised we have to do something and after the success of our street work program I knew we could bring change,” she said. She said refugees often live with almost nothing. “Many are very isolated. They are traumatised by their dislocation and stressed from culture shock and most have money problems,” she explained. “New migrants with families have to work very hard to establish themselves financially – sometimes holding two jobs. That leaves them no time for the family and leads to relationship problems. By the time they realise their children have turned to drugs, it is too late. “Culturally, we Vietnamese tend to be more reserved. Parents don’t share their feelings or problems much with their children and yet have high expectations of their children to achieve. They live through their children and hope to build up their reputation through their children’s achievements. This puts tremendous pressure on the younger generation whose selfesteem is badly affected if they fail to live up to their parents’ expectations. “Many young people face difficulties in school because of the years they have missed out while in refugee camps. And when they eventually settle down and get to school,

Hanoi


Refugee Health Planning Day

Lan explained that there are also separation issues. Couples separate because they could not both leave Vietnam and eventually they end up remarrying.

There is an over-representation of refugees amongst people presenting with hepatitis B and certain other communicable diseases. Generally speaking, general practitioners and health services are not adequately trained or supported to deal with the problem, participants at a Refugee Health Planning Day were told. Health and human services consultant Paul Laris said although there is a protocol for screening communicable diseases, including hepatitis B and C, infection among new arrivals are often not detected. This could be due to poor documentation, long waiting periods and other local factors in the countries of origin.

Children left in Vietnam are often sponsored to come to Australia after years of separation from their overseas parent. They arrive to a parent – usually father – they don’t know anymore, to a new environment, new language and a new family since their Australian parent would often have had new children with their new spouse. “For these children, it is frightening and difficult,” Lan said. “Wrong expectations on both the parent’s and children’s part often lead to misunderstanding and all sorts of problems.” Through their Youth at Risk Program, VNCA (SA) supports these young people, working to resolve issues before they run away, engage in high-risk behaviours or develop mental health problems. “There is a lot more that needs to be done,” Lan points out. “Children with mental health issues often come from home environments where the adults have mental health problems. “Older Vietnamese migrants are isolated. They need support, need visitors who show care and concern and are able to link them back to the community. For the moment, due to lack of resources, our organisation can do very little in this. We provide support to our ex-clients but we are unable to take on new clients with mental issues.”

Mr Laris pointed out that GPs need support and training in providing culturally appropriate care, dealing with refugee family groups and using interpreters. They need links to services for cultural and ethnic minorities, and they need training to develop expertise in medical conditions not normally encountered in Australia.

community news

their parents are unable to help them with their homework.”

The system currently relies on people taking responsibility for their own health care, but health is often not a priority for refugees dealing with economic survival, cultural shock, disorientation, learning a new language and understanding their new living environment.

Health providers have to provide culturally appropriate access to refugees, allowing time and flexibility to deal with family groups, he said. They also need to understand the legal, social and economic context of refugees, know and provide links to multicultural health services and develop expertise in the use of interpreters.

The aim of the Refugee Health Planning Day was to strengthen partnerships and improve coordination in the delivery of health care to refugees and other recent arrivals. The focus was on the management of infectious diseases including HIV/AIDS, viral hepatitis, sexually transmitted infections and other related diseases in new immigrants.

Reliance on GPs to manage communicable diseases in the refugee population is problematic because they often have little understanding of the context of refugees. There are no follow-up systems for chronic infections such as hepatitis B and C after diagnosis.

The day was organised by Relationships Australia and the Communicable Disease Control Branch of the SA Department of Health. It was attended by over 100 participants from health and community services organisations in metropolitan Adelaide.

In the meantime Nguyễn Mộng Lan and her team will develop their skills and work with whatever they’ve got to cater to the needs of their community and stay true to their ‘Hồi Sinh’ motto. You can contact VNCA (SA) on (08) 8447 8821, or at 62 Athol St, Athol Park SA 5012. Hepatitis C Community News Autumn 2006 •


community news

Hepatitis B/Hepatitis C Co-infection: A Beginner’s Guide There are several different hepatitis viruses, which are contracted in different ways. All of them involve inflammation of the liver. They share similar symptoms, such as nausea, jaundice, low-grade fever and abdominal pain. Co-infection is infection with another virus when one is already present. This article discusses co-infection of hepatitis C with hepatitis B. When this happens, the presence of both viruses in the body can complicate a person’s health and change their treatment outcomes. Different people will experience the effects of coinfection in different ways. It is important to discuss your case with a knowledgeable doctor or nurse in order to ensure that you get the best treatment possible. You should also be checked for other viruses, as it is possible to have a hepatitis/HIV co-infection, or even a coinfection involving hepatitises B, C and D. Each virus present will affect the way treatment needs to be administered. Because hepatitises B and C can be transmitted by infected blood, they may both be contracted simultaneously. Alternatively, a person with one of the viruses may be unlucky enough to contract another one at a later time. This means that, even if you already have hepatitis of one kind, you should still take precautions against contracting any other hepatitis viruses. There are even some viruses you can only contract when you already have another virus. For example, only those who already have hepatitis B can contract hepatitis D.

Hepatitis C Community News 10 • Autumn 2006

Having combined chronic hepatitis C and hepatitis B can lead to more severe liver disease and an increased risk of developing hepatocellular carcinomas— malignant cancers of the liver. To make things more complicated, the viruses may also work against one another in the body. A coinfected person is at risk of higher rates of cirrhosis (scarring and damage of the liver) and hepatic decompensation (failure of the liver to compensate for any damage,

and the reverse is also true. It is even possible for each virus to inhibit the other simultaneously, or to alternate which inhibits the other. It is important to remember that this does not mean that the inhibited virus is gone from the body. Instead, its effects may be hidden or halted until the other virus is treated, and then may flare up again. This means that a doctor who knows you and your medical history is particularly important, so that he or she can determine which form of treatment is best. There are wellestablished treatments for both hepatitis B and hepatitis C, but there are not for those who are coinfected with both. However, there is a reasonable amount of evidence to suggest that the treatments used for hepatitis C alone are also good treatments for co-infection. One study showed that, using Interferon plus Ribavirin treatment, there was a hepatitis C clearance rate of 43% for coinfected patients, compared with 60% for those with hepatitis C alone.

resulting in decreased liver function). One study has found that co-infected patients had double the rate of cirrhosis compared with patients who had hepatitis C alone. Another study found that the rate of hepatic carcinomas in co-infected patients was four times that of patients who had hepatitis C alone. Several studies have demonstrated that the hepatitis B and hepatitis C viruses interact with each other in the body, and so can affect immune responses. Being infected with hepatitis C can suppress the replication of the hepatitis B virus,

Other studies have shown that assessing which (if any) of the viruses is “dominant” (preventing the other from replicating) in a co-infected person is helpful in determining which treatment method to use. Caution should also be exercised, as treating one virus may cause the other one to “flare”, as it is no longer being prevented from replicating. Unfortunately, there has been relatively little research done on coinfection of hepatitises B and C. The best summary article available online is by Seth Crockett and Emmet Keeffe, and can be found at http://www.ann-clinmicrob.com/ content/4/1/13.


A Future Cure? The ABC’s Catalyst program reported on April 20 that Dr Mick Graham, a Brisbane scientist who now runs his own company in California’s Silicon Valley, had come up with a technique that might just be the way to a cure for RNA viruses like hepatitis C and HIV. The process is called RNA interference, or RNAi for short. The way it works is quite elegant. Humans are constructed from the instructions in our DNA, a doublestranded spiral molecule inside our cells. Hepatitis C and HIV are made of RNA, a similar but only single-stranded molecule. The virus RNA can get into a host’s cells, and make them start to produce the virus’s genetic machinery rather than the host’s. Because the virus

has hijacked the cell, it can get its creations past the body’s normal defence systems. RNA interference involves introducing a piece of modified RNA into the host’s cells. This modified RNA is both similar to the virus RNA (but not similar enough to cause any problems), and conspicuous enough to attract the body’s defences. This means that the host’s system is now primed to detect and destroy any products of the dangerous viral RNA. RNAi is based on a process that has been imperfectly understood for a long time—until a few years ago, it was thought to work only in plants. But now that Dr Graham’s team has discovered how to apply it to humans, with dramatic results in initial tests on patients with HIV, it shows real promise.

Narrative Theatre Council staff members Nicci Parkin and Kerry Paterson attended a week-long narrative theatre professional development opportunity as guests of Relationships Australia (RASA). Under the guidance of Yvonne Sliep and Casper Mbatha, visiting from South Africa, about 25 participants—from 20 different cultural backgrounds, we discovered!—collaborated to develop their skills and understanding around the practice of narrative theatre. PEACE staff at RASA had previously worked with Yvonne and Casper, and have used narrative practices with success as part of their community education programs working with people of CALD backgrounds.

and a set of tools for working with individuals and communities with issues of importance to them. For instance, Yvonne and Casper work a lot at the invitation of communities affected by HIV/AIDS in South Africa. The narrative practitioner will use structured physical exercises to release stories that inform shared understanding, through putting yourself into another’s shoes, seeing differently, and sharing those processes. In this way, narrative theatre can be used as an effective community development methodology. Narrative theatre exercises can also be integrated into existing education and community development approaches to working with the community.

Narrative theatre is both a theory

Nicci Parkin

As always, testing procedures and safety measures mean that it will be some time before any final treatment is widely available. However, if you want more information in the meantime, there are a number of websites you can visit. •

• •

community news

RNA Interference

www.abc.net.au/catalyst/ stories/s1619353.htm is the transcript of the Catalyst story, www.abc.net.au/catalyst/ watch/default.htm features video of Catalyst stories, www.nature.com/nature/ journal/v425/n6953/pdf/ 425010a.pdf is the Nature article about the research, and www.benitec.com is the website for Dr Graham’s company.

New Forum Service providers in the migration settlement sector now meet at quarterly forums to discuss issues and improve on collaboration. The Humanitarian Settlement Forum (HFS), convened by the Migrant Resource Centre (MRC), brings together four previous networks – the Human Settlement Agencies Network, the Northern Settlement Co-ordination Committee, the Southern Metropolitan Settlement Co-ordination Committee and the Cross-Cultural Youth Agencies Network. Cynthia Caird, Manager of Community Participation and Volunteer Program at the MRC said the HSF met for the first time in April and is working well as a forum for quality assurance and developing partnerships. “By bringing together these four networks, we have minimised duplication for agencies which are members of more than one network.” She said seminars at the HSF meetings will focus on settlement information and development. Hepatitis C Community News Autumn 2006 • 11


community news

Telling Stories As we move into the cooler months, the Getting It Together (GIT) Rural Network is also moving full steam ahead with our GIT storytelling weekend. At the time of writing, this was due to take place on the 6th and 7th of May. This weekend was originally conceptualised as an important way in which people could be supported to explore their individual and collective experiences of living with hepatitis C in rural communities. At the February GIT weekend, Relationships Australia worker Roxanne Adams facilitated the initial storytelling discussion and consultation with network members, and it is from these discussions that the content of the May weekend was developed.

During the weekend itself, network members will be supported to use a variety of approaches (including narrative theatre, digital storytelling and cartooning) to explore and express themselves. GIT Network members will decide if and how they wanted their stories conveyed to others. It will be facilitated by Roxanne Adams, with Hepatitis C Council of SA workers Nicci Parkin (working on the digital storytelling) and James Morrison (joining the team as a resident cartoonist). If you were unable to attend the weekend and would like to find about more about how you can contribute to the GIT Stories Project, please contact Michelle Morrison (GIT Community Worker) on 8362 8443 or michelle@ hepccouncilsa.asn.au.

The February Storytelling Weekend

Nick and fans

Youth Expo Nick Taylor, intrepid board member and youth-magnet, and Nicci Parkin, educator, braved early morning traffic to participate in the annual Youth Expo held at the Rec Hall in Mt Barker. The aim of the day is to bring leavingage high school students in the Adelaide Hills areas together under one roof with health and community services and careers options and services. Schools were bussed in on a schedule and students encouraged to avail themselves of the numerous stalls and displays. By the end of the day, an estimated 550 students had made their way around the edges, picking up leaflets, lollies, and other pocket-sized paraphernalia to take home in their showbags. The tattoos on the council’s stall were as popular as always, but we made them earn their prize: they had first to rate hepatitis C transmission risks as high, low or no risk by placing various behaviours in the right order. Interestingly, almost all the students rated sex as the most risky behaviour (perhaps the most highly rated behaviour?). While we know this is not true, it did make for an accessible conversation entry point with sex-cusped teenagers, and gave us a valuable insight into the current myths, knowledge and attitudes of young people. And, with everyone reviewing their preconceived ideas and earning their tattoos so well, Nick and I had to drive around madly in the lunch hour hunting down more tattoos, and enjoying the quiet drizzle of a Mt Barker autumn day. Nicci Parkin

Hepatitis C Community News 12 • Autumn 2006


STAFF Manager: Danny Gallant Senior Administration Officer: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Lyn Joan Steve Liz Will Education and Development Coordinator: Kerry Paterson Metropolitan Educator (Community Programs): Sharon Drage Rural Education and Support Officer: Leslie Wightman Metropolitan Educator: Nicci Parkin Getting It Together Program: Michelle Morrison Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Claire Maggie Gail Phil Lyn Publications Officer: James Morrison Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood Treasurer: Barbara Williams Senior Staff Representative: Danny Gallant Ordinary Members: Leslie Dunbar Enaam Oudih Carol Holly Nick Taylor Anthea Krieg

Useful Contacts & Community Links

Much of this edition is given over to some of the interesting news and stories which came out of the 5th Australasian Viral Hepatitis Conference, which was held in Sydney in February. The theme of this year’s conference was improving access to knowledge, prevention, resources and treatment and selected highlights are brought to you beginning on page 2 of this edition. The Federal Minister for Health, Mr Tony Abbott, launched the conference with the much-welcomed news that as of 1 April 2006, liver biopsy will no longer be one of the criteria to receive standard antiviral therapy. By removing this barrier to accessing treatment, it is anticipated that the very low rates of treatment uptake will be increased, and—importantly—the long-term health of many people living with hepatitis C will be improved. Several staff and community members were present at the conference and shortly after returning from Sydney the council hosted a conference feedback forum at Nunkuwarrin Yunti for interested members of the workforce and community. With over 50 people in attendance, the council was given a clear indication that this sort of information-sharing forum is valued in South Australia, and we should continue to provide them. You can view the feedback forum presentations on our website at www. hepccouncilsa.asn.au.

Hepatitis C Council of SA Provides information, education, support to the hepatitis C community and those at risk of infection. 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 Council’s Hep C Info and Support Line for information on (08) 8362 8443 or, for rural 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 culturally and linguistically diverse backgrounds. (08) 8223 4566

If you’d like to submit a letter, an article or just make a suggestion to the Hepatitis C Community News, please write to the editor at PO Box 782, Kent Town, SA 5071 or email to newsletter@hepccouncilsa.asn.au. The copy deadlines and publication dates for the rest of 2006 are: Winter 2006: deadline 28 July; published 21 August Spring 2006: deadline 3 November; published 27 November

Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander people. (08) 8223 5011

About the Cover: Celebrations abound over the removal of liver biopsy as a prerequisite for hepatitis C treatment. Artwork by James Morrison.

Contents Australasian Viral Hepatitis Conference 2 What Injecting Drug Users Don’t Understand... 3 The Prison Problem 4 Stigma & Discrimination News 1 1 6 7 9 11 11 12 12

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.

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 169 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780

The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can recieve 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 men, 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 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666

A Day on a Hepatitis C Info Stall

The End of Biopsies? Election Survey New Riverland Nurses HeplinkSA Launched Refugee Health Planning Day RNA Interference Narrative Theatre Getting It Together Update Youth Expo

Other Features 8 Resuscitating Troubled Lives 10 Hepatitis B & C Co-infection

Clean Needle Programs To find out about programs operating in South Australia, contact the Alcohol and Drug Information Service. 1300 131 340

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.

Cartoon: James Morrison

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk.

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Autumn 2006


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