Community News Summer 2006
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk.
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 Anthea Krieg Carol Holly Enaam Oudih Helen Ingham Nick Taylor
Hepatitis C is a socially neglected and unacknowledged disease. The pain of living with hepatitis C goes unacknowledged, and the significance of hepatitis C deaths goes unmarked. It is not even clear whether complete records are kept of hep C-related deaths. The recent loss of a long-time volunteer and the hospital experience of another person close to the HCCSA brought this issue into sharp focus for us at the council. This issue therefore focuses on grief: not only the grief that comes when someone dies, but also the grief experienced when diagnosed with a serious disease like hepatitis C. We introduce the topic with the hospitalisation story. The terrifying first-hand experiences so vividly described demonstrate many of the issues explored in this edition. We hope to provoke ideas and discussion on the pain and challenge of living and dying with hepatitis C, and how it can best be acknowledged. If you’d like to submit a letter, an article of just make a suggestion, please write to the editor at PO Box 782, Kent Town, SA 5071 or email to firstname.lastname@example.org.
. The copy deadlines and publication dates for the rest of 2006 are: Autumn 2006: deadline 21 April; published 15 May Winter 2006: deadline 28 July; published 21 August Spring 2006: deadline 3 November; published 27 November About the Cover: This issue’s cover is a self-portrait by the late John Shannon, painted as part of a mural of portraits on the Council’s fridge. See pages 6-7 for memories of John and his life.
Contents Focus on Grief 1 When Fear Turns to Self-Loathing 2 Surviving Diagnosis 4 Grief Behind Prison Bars 6 John Shannon 8 Loss upon Loss upon Loss News 10 The End of Biopsies? 12 Brief News Community Updates 5 The New HCCSA Board 8 Thousands of Tiny Pieces 9 Scary Muscles & Scarred Livers 11 Further Education 11 Council News 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. Two editions in a row with the same editor - howzat?
When Fear turns to Self-loathing The alarm bells were sounding loud and clear when I awoke one morning feeling shaky and nauseous with a very full and dull ache in my stomach and an unfamiliar taste in my mouth. There was actually a buzzing in my head and a tingling sensation down to my fingertips. When I got up from bed and broke out in a sweat I immediately alerted my partner to stand watch as I made a beeline for the toilet to relieve my guts of their bloody contents. It came out of me in such propulsion that my partner later remarked he was witness to a scene from a slasher film. A gastrointestinal bleed is a frightful event for anyone. It’s also the realisation of a fear many of us have been alerted to in consultation with our doctors. I was shaken to the core, and deeply afraid of what lay ahead. Surely, this would be my demise. I knew that I had to get to the hospital immediately. After ten long days in hospital it was time to go home, but not without my fears compounded by
an understanding that this was a life-threatening event that meant my baseline health had changed irreversibly. I have always survived on a healthy dose of denial, balanced with an understanding of what probabilities lay ahead for me. Now I was a ‘bleeder’ and a ‘cirrhotic’, and the selfloathing set in. I found myself revisiting the stigma of my illness, the uncertainty of the future, the
regrets of the past and the wasted opportunities. I started referring to myself as the ‘Biohazard’. Endless hours listening to sentimental lyrics and pining for what could have been consumed me. I still can’t get Mary Margaret O’Hara’s song “Body’s In Trouble” out of my head (‘Who do you talk to?
Who do you talk to? Who? When a body’s in trouble?’). I was not used to this, nor the anxious anticipation of what disaster lay ahead with every fart, belch, or bowel movement. After a weepy sleepless night I knew that I had to reach out for help. I could not reconstitute my self-worth by becoming isolated. I was grieving the loss of my health sixteen years after my diagnosis of hepatitis. Denial was not helping me now. I am now back at work, and what has changed? The fears are still there, and I am not cured, and there is a risk of bleeding again. My illness is part of who I am and how I navigate my journey through life. Coping with fear and confronting self-loathing is part of that. At present it seems a never-ending grief, and I get weary just thinking about it. I’ve learned that although I can’t reverse the damage done to my body, by allowing myself to grieve for what has happened, I will restore my health in other important ways.
Much More Than Just An Illness There’s much more to me Than just an illness. I’m a: friend, sister and aunty. A writer, poet And claim to be a part-time genius. Sometimes when I disclose That I have Hep C
I feel forgotten, Not there; Just a big virus on legs. Please don’t forget The PERSON Behind the multitude of labels. Susan Leisavnieks © 2005 Hepatitis C Community News Summer 2006 • 1
Surviving Diagnosis An exploration by the MOSAIC Team (Bill Gaston & Cathi Healy) A hepatitis C diagnosis can come as a shock and a loss. Grief is the natural response to a significant loss. It is not just a temporary state of mind—it is a whole process that may take years to work through. But it must be remembered that a hepatitis C diagnosis is a long way from news of an imminent, or even premature, death. The loss is not so much of life or anticipated length of time remaining as it is loss of comfortable assumptions about how life will progress and how safe a person is in the world. It is an invitation into a realm of
• They have a chronic illness. They feel defiled by the invasion of their body by a hostile virus and fear further loss of bodily integrity and wholeness. They feel the loss of control of their circumstances and their sense of privacy and autonomy (as they now have a notifiable disease), and can feel labelled and disempowered. • They have a communicable disease. They can experience a change of identity with the medicalisation of their lives, and the loss of the previously relatively
is contagious and associated with prohibited behaviours and therefore surrounded by fear—unlike cancer, for example. People without obvious physical impairment may be labelled as malingerers and hypochondriacs, despite how terrible they feel. • They must take up the burden of secrecy. Disclosure of their status becomes a problem through the fear of judgment and painful consequences. This increases feelings of separation and isolation. Enforced secrecy leads to disenfranchised grief (grief which cannot be openly acknowledged, publicly mourned, or socially supported) as the person living with the hepatitis C virus is often not socially supported after disclosure. • They must face difficult decisions. For example, deciding to embark on and continue with treatment (with its physical and psychological side effects) if the likelihood of the virus being cleared is not as great as for other people. For example, those with genotypes 2 or 3 with no significant liver damage can have up to an 80% chance of clearing the virus.
uncertainty, when assumptions about personal identity, health and wellbeing and future plans and goals are suddenly thrown into question. The result can be denial for a period of time manifesting itself in a person neglecting to take care of themselves properly and engaging in risk-taking and unsafe behaviour (‘What have I got to lose? Life is stuffed anyway!’). On the other hand, the result can be depression or withdrawal, which further reduce quality of life. A person can find the following problematic: Hepatitis C Community News 2 • Summer 2006
• They have an uncertain future. They may or may not be able to get rid of the virus, depending on genotype, level of liver damage, and tolerance of body to treatment. This is seen by the person as pure chance.
The time of diagnosis is when people may be out of their depth, unprepared or unable to rise to the psychological and practical challenges they are facing. That can be because there is a mismatch between the complexity and enormity of challenges they are confronting and their ability to use their habitual problem-solving strategies. But with time they can reconnect with their strengths, their sense of hope and their resilience and manage to more or less “live well” with hepatitis C.
• They suddenly experience being more marginalised than ever before. This is a disease which is surrounded by social stigma and discrimination because it
The degree of grief varies with individual circumstances, values, beliefs and attitudes. A person may have other more immediate concerns—safety, finances or
‘carefree’, perhaps ‘innocent’ and optimistic, buoyant self—a loss of hope.
accommodation. They may or may not know other positive people and those people may have vastly different experiences of health or illness. Many people live in communities where they feel isolated and unsupported and where attitudes to hepatitis C are particularly hostile. People in prisons are in a unique social structure with its own values. Those in rural communities and in culturally and linguistically diverse populations feel added pressure to maintain secrecy so as not to jeopardise the social support they receive in all other aspects of their lives. People vary with how much information they can absorb at the time of diagnosis; many are not in the frame of mind to absorb much. However, they need it shortly afterwards. More information can mean less shock and fear of unrealistic outcomes (such as when there is confusion with other viruses such as HIV) and more realistic expectations. People then need to be able to express their reaction to the news. They can feel much better if they can feel listened to, enabled to express their fears, worries and feelings, and be heard. This is a grief-killer. People often fear the worst. It seems to be a result of shock and, disturbingly, confusion in the minds of people between hepatitis C and other blood-borne
Cathi Healy & Bill Gaston
viruses and diseases, especially HIV. Certainly many people have a strong fear that they are doomed to die prematurely and that this will happen after suffering increasing physical and mental deterioration and loss of quality of life. Naturally, people are more prone to these reactions if they lack correct information or connection with others who may be positive or who have undergone treatment. Diagnosis can be a blessing or a curse. It can supply an answer to a long period of worry. It can also feel like a judgment on past life experience, a labelling of an individual’s weakness and a condemnation of future chances and choices. This is a time of increased risk of depression and suicidal ideation when a person has been dealt a shock but not yet had time to integrate their familiar strengths and strategies into the new reality. Stress, anxiety and depression accompany the knowledge that lurking within one’s body is a foreign virus which is attacking its host and progressively degrading its integrity. People need time to process the information and its implications for all aspects of their lives and many find it helpful to have a sounding board in the person of a good friend or counsellor with whom they can explore their thinking, do a reality check and come up with strategies for coping and moving on. They may need to reassess and change their current lifestyle, their goals and decisions regarding family and personal relationships, career, travel, accommodation and living arrangements. The experiences of those close to the newly diagnosed person are coloured largely by their perceptions of how that person is coping. If the
person is healthy, cheerful and has a positive attitude they will, of course, worry less. If the person is depressed, distraught and fearful, those close to them may feel responsible to help them feel better. Closely affected people often need reassurance that just being there with non-judgmental love and approval is the most powerful thing they can do. People in distress don’t want advice, or to be cheered up, or to be given fixes for the mess they are in. They want to be heard and supported and nurtured until they can get back on their feet to engage their own solutions. Closely affected people may require counselling to help them cope with their own stuff, both for their own sake and so that they may be able to better support people living with hepatitis C. They can be fearful of what the future holds for their lives together and worry about future plans. They feel distress around being faced with their loved one’s and their own mortality and anxiety about the preciousness of time.
Useful books and websites Coping Well: Positive ways to deal with life-challenging disease by Rubin Battino Stop the world I want to get back on by Elaine Peddy (explores grief through death and non-death losses—available through the COPE Library, phone 8245 8111) Coping with Grief by Mal McKissock (small, concise book on living with grief—available through the COPE Bookshop, phone 8245 8111) www.grieflink.asn.au (SA website containing lots of good information and resources) www.hepatitisaustralia.com (the Hepatitis C Council of Australia) Hepatitis C Community News Summer 2006 • 3
Grief Behind Prison Bars: Arieta Papadelos has had many years of experience in working with people who have hepatitis C. She is co-ordinator of the Partners of Prisoners program (POP) at Offenders Aid and Rehabilitation Service of SA. Much of the program’s work is devoted to helping prisoners and their families deal with the effects of hepatitis C and HIV infection.
no rights to treatment until you’re sentenced. If you’re not doing too well, it’s just tough, really. The only time they’ll treat you is if it’s actually life-threatening. But it is an opportune moment for people to get health checks, which they won’t have got outside, so a lot of people find out they have hep C there. We’re able to provide information, some education.
“A lot of what we deal with, though it’s related to hepatitis C, is about the immediate rather than the long-term. If someone’s not able to pay their bills, if they’re getting kicked out of their house, we need to deal with that before we can look at the remoter consequences of their hep C.”
“You’re in a position where you have all your rights taken away from you, so a lot of people don’t believe or trust any information they get from the officers, even if it’s correct. It’s tricky. We go to the Adelaide Remand Centre’s Induction Unit, and try to see those who are fairly new to the system. We go there weekly, do a rundown on what hep C is, how it occurs, and also talk about the various diversion courts—such as the drug court—because sometimes they may have not seen a lawyer who could give them that information.
Money worries are ever-present. “Many people don’t realise the costs that fall on the partner and families. Remember that the partner has been left with one income to pay rent, bills (some which have been exacerbated by their partner before incarceration), there is an expectation that they will put money into their account to assist in the purchase of cigarettes and snacks, and in many cases to make phone calls, especially from country prisons. Then there is the cost of visiting someone in prison—travel expenses, accommodation, food. A prisoner can start up in the Adelaide Remand Centre and end up anywhere from Mobilong (Murray Bridge) to Port Augusta.” “Then there is the issue of children, keeping in contact and visiting too. Many of the partners don’t have a car. It’s difficult, too, because when the partner’s in prison, the family often shuns them, so they don’t have that support.” With all of this, health is usually one of the last things they worry about. So what actually happens if you have hepatitis C and you get caught up in the justice system? “If you’re on remand, which might be two years, you actually have Hepatitis C Community News 4 • Summer 2006
“We also go to the Adelaide Pre Release Centre (also called ‘the cottages’) once a month to carry out one-on-one harm reduction
sessions. It’s surprising how many myths we hear, even from longterm prisoners, so we provide accurate information about what services are available to them. Of course, not all prisoners end up at the cottages, so they exit prison without that information.” Does POP do much grief counselling for people who are newly diagnosed, or for their family members? “It varies—we have quiet spells and then we have pockets of referrals. Where possible, after providing information about what a positive diagnosis means, we provide information about other services, such as the Hepatitis C Council or Mosaic Counselling. If they are in contact with the RAH, we suggest that they speak to a doctor or nurse about specific questions relating to their treatment. Some of this can depend on their relationship with the social worker if they are in prison.
An Interview with Arieta Papadelos “Our response very much depends on what the individual asks and wants. We always have resources with us if we are carrying out harm reduction sessions. If we do not have a resource addressing questions that are being asked, we ensure that we follow up with the right information or contact number. I must emphasise that we do not carry out formal counselling—it’s more emotional support, reassuring and encouraging the individual, and providing factual and practical information. “For family members it varies. In most cases we have had partners who find out that they are positive through blood tests to do with their pregnancy. They can generally recall when transmission occurred because they only ever used with
their partner. Using etiquette can mean that the male partner usually goes first, and then injects the female partner. There is generally an acceptance that they have put themselves at risk—their fears turn to the risk of their unborn child being positive, and the worry and guilt associated with that. “We have had calls from other family members regarding the risk of transmission to their children and themselves if they have someone that is going to stay with them, or when they visit. We will usually go through scenarios of what their fears are and deal with them, as well as posting out information and making referrals to other services.” Do people, especially the newly diagnosed, tend to see the worst
possible outcome as being the likeliest? Do they tend to assume hepatitis C is a death sentence? “Again, often but not always. We have definitely had people who think that their diagnosis means a death sentence, and we attempt to alleviate that fear by discussing how the virus works and the number of treatments now available—both conventional and alternative. “In most cases, it is generally people who do not feel they are at risk, or have never been an injecting drug user, who feel that hepatitis C is a death sentence. We find this comes from misinformation over many things, including confusion over the different types of hepatitis, and a mix-up between hepatitis C and HIV.”
HCCSA’s New Board Arieta Papadelos (Chair): “I am employed at Offenders Aid and Rehabilitation Service (OARS SA) as Coordinator of the Partners Of Prisoners (POP) program. HCCSA and POP are both funded from the Department of Health. In terms of overlap, we’ve always worked alongside each other in partnership, having had an OARS SA staff member on this board for about seven years. It is an honour. There are so many gaps and much work to be done, and I’m glad to be in a position to assist in the facilitation of new resources and the promotion of information and education relating to hep C. As I see it, we have a long way to go in changing the mindset on hep C, but we’re getting there!”
Peter Underwood (Secretary): “I’m now into my fourth year on the council’s board. This involvement has given me the opportunity to employ my academic training and to turn being diagnosed with hep C into something positive.”
Catherine Ferguson (Vice Chair): “I have served on the HCCSA board for the past two years. My current nursing role with the RAH keeps me at the ‘coalface’ of hepatitis C prevention, care and treatment management. Hepatitis C has been my professional specialty area for the past five years.
Carol Holly: “I have been involved in a number of committees and community organisations over the past 10 years, including C Clearly, SAVIVE, Users’ Association of SA and AIVL (Australian Injecting and Illicit Drug Users League), representing the issues of people who inject drugs. For the past two
Barbara Williams (Treasurer): has been an HCCSA board member and treasurer since 2004. Leslie Dunbar: “I have been associated with the council and the hepatitis C sector for six years, and this is my second term on the board. I have a nursing/midwifery background, and I’m now working in the community to increase education about hepatitis C in a number of different areas.”
years I have been employed as manager of SAVIVE, the peer-based program for injectors.” Helen Ingham: has been on the HCCSA board since 2004. Anthea Krieg: “I currently work at Nunkuwarrin Yunti. I have worked with Aboriginal communities for over 20 years now, and have also worked as a doctor in the prison system, including the role of clinical director at the SA Prison Health Service.” Enaam Oudih: “I have a nursing background, specialising in community health and cultural diversity. I’m of Palestinian background, but grew up in Israel. Currently I manage the P.E.A.C.E. Multicultural HIV and Hepatitis C Services based at Relationships Australia SA.” Nicholas Taylor: “I have been treasurer at Marden Adult School SRC, and a member of Marden’s education board.” Hepatitis C Community News Summer 2006 • 5
John Shannon In Memorium
Eulogy for John Shannon By Kerry Paterson
John Patrick Shannon had volunteered at the council for years, and was familiar to everyone who came in to the building. His peaceful death in late 2005 was a great loss to the organisation and to all who knew him. A memorial service was held in his beloved Botanic Gardens in December. What became clear in the conversations between council staff and volunteers (some of whom had known John for decades) in the days and weeks that followed his passing was that there is no public process or event to acknowledge the lives and deaths of those affected by hepatitis C. This does not mean that something could not be brought into being, though—just look at the world-renowned AIDS quilts, for example. Though the Hepatitis C Council acts as a sort of centre for the hepatitis C community, we obviously aren’t here to tell people how they want their loved ones commemorated and celebrated. What we can do is provide some of the organisation and resources. We’d like to ask all of our readers to think about what you would like to see done. Please let us know, by phone or post or email, and we can start working on bringing it to fruition.
Hepatitis C Community News 6 • Summer 2006
Whether you have known John all your life or for only a day, you are aware of his great warmth and humour, and his ability to charm all those around him with his engaging smile, the twinkle in his eye and his love of conversation. A conversation with John was inevitably long, and would most often lead you in unexpected directions. John’s natural curiosity about the world, and the people in it, the world’s beauty and its darkness, would mean you could just as easily find yourself chatting with him about music and art, as social justice, the cosmos, or quantum physics. And as we all know, John’s special talent was for telling stories. I think it would be fair to say that John was no stranger to the struggles of life and, as the Roman philosopher Seneca noted, though we cannot always choose what will happen to us, we can choose how we will respond. John always seemed to have the knack of finding the positive in any situation, weaving the adversities he encountered in life into his stories that were richly textured with plots and subplots and an amazing array of characters. These stories more often than not would have you chuckling, if not laughing uproariously, at various stages of the telling. We here today have
all had the privilege of bearing witness to John’s life through his storytelling. We know more of John because of these stories—of his love and admiration for his beautiful Claire, his love for his Mum, and for his family, and his love for his many friends. John’s capacity for love is at the very heart of his stories. All of us here today have stories that acknowledge the love we too have for John. I would like to share my story which started about seven years ago when John first arrived at the Hepatitis C Council of SA, not too long after I began working there. My lasting impression of that first meeting is of John’s stylish and colourful dress sense. Looking back now, it seemed like no time at all before John endeared himself to us all at the council and became an integral part of our growing organisation. John has contributed his time, energy and many talents to the council over the past seven years, a ‘quiet achiever’, going on to lead the information resource volunteer team, which produces and distributes information across SA; staffing numerous information stalls at public awareness-raising events; and, most importantly, being one of the friendliest faces, warmly welcoming newcomers to the council, and engaging them with his stories. John also became our resident artist at the council as he initiated
the task of recording a slice of our early history, by capturing ‘the faces’ of our organisation in caricature on the front of a donated fridge. John’s choice of canvas for his task, the fridge, to me demonstrates his ‘knowing’ of the essential factors that draw a community together—the sharing of food and conversation which creates an environment where people feel welcomed and nurtured. The fridge then is symbolic of this most basic gesture of hospitality which lays the groundwork for connecting with people in a community. John certainly had a rare talent for connecting with people. John worked on this project for many, many months, fitting it in around his other duties, coming in at odd periods of the week, and setting up quietly with his paints, brushes and of course his music plugged into his ears. I am forever grateful to John for his calming presence in this role. When the tasks of the council appeared overwhelming to me at times, it was indeed a blessing to enter John’s space, take a chair in the kitchen and a deep breath and drink in his quiet creativity, smiling blue eyes and gentle words of encouragement.
This page Above: John as a teenager Above left: John and his fridge self-portrai Left: John’s fridge portraits in full Other page Left: John in the 1980s Right: John in the 2000s
Poem for John Shannon Over the darkening trees of Hyde Park crows wheel about, anxious… gathering like a sad omen. Closing in on night… do they tell of some shift in fate? Perhaps they’re messengers, with secrets from another world for the earth’s lonely children… It’s nothing, though… nothing but a change of weather. And the news has already come through… the final news has already been told.
It seems all too soon that it is time for us to bid farewell to our darling John, for us all to accept that he won’t be with us again in a physical sense, but there is no doubting that John’s strong, vibrant spirit will endure as we continue to recount our favourites of John’s stories to each other for many years to come with much love and laughter in our hearts. Hepatitis C Community News Summer 2006 • 7
Loss upon Loss upon Loss HCCN spoke to a number of hepatitis C positive people about the emotional aspects of their diagnoses. They have all chosen to remain anonymous. All names used are pseudonyms. Diagnosis with a life-threatening illness usually elicits sympathy and support from family and friends you never even knew you had— unless your diagnosis is hepatitis C. People newly diagnosed with hepatitis C not only have to deal with the shock of reduced life expectancy, but often have to do it with minimal or no support. Due to stigmatisation of the disease, they often feel it easier to keep quiet about their positive status. Others may disclose to friends or family, only to be judged as having ‘brought it on themselves’. “I didn’t tell anyone other than my partner,” said Ann. “I felt like I was contaminated, unclean; not a valid person anymore.” Others described feelings of shame, feeling “lowly” or “like a leper”. One said she felt “unbelievably alone”. This can also be accompanied by feelings of guilt for “allowing” themselves to contract the disease. Because hepatitis C was identified only in 1989, knowledge about the disease and its outcomes was limited even among health professionals. It is not uncommon to hear of people being given a positive result and not told of the implications. For them, the usual emotions that accompany diagnosis only came years later when the implications of hepatitis C finally hit. “I was told I had the antibodies and I thought that was a good thing because antibodies protect us,” Ann recalled. “It wasn’t till four years later when I was being treated for depression that the full implications of the diagnosis was explained to me. “I didn’t take it too well. Each morning I’d wake up at around Hepatitis C Community News 8 • Summer 2006
3:30am and within 15 seconds, I’d be crying. I felt there was no hope because they said I couldn’t have treatment due to my depression. I grieved for the loss of my future and loss of the ease I used to have towards life. I now needed to be more guarded and considered in dealing with people. I even gave my partner the option of reconsidering our relationship.”
always practised safe sex. “That was often difficult and I’ve had to forego some relationships because I found it too hard to disclose my diagnosis,” she said. Grieving with hepatitis C is not necessarily a one-off experience that takes the person through the classic “stages” of grief. Depending on the disease’s progression in the individual, the loss could be ongoing: ‘loss after loss after loss’, as one person puts it. Perhaps because it often took so long for people to realise the implications of their illness, some people said they felt no anger, only sadness and depression, which one person identified as repressed anger.
Bobbie, when returning a positive result 14 years ago, was told she was a “carrier” since she didn’t show any signs of illness. She “carried on as usual” for many years and is only now realising the seriousness of what she’s got. “It is scary,” she said. “Mainly because I’ve lost normal life. I’m starting to ‘recognise’ symptoms. Before, when I was tired, it’s because I’d been working too hard or I had the flu. I could do something about it. Now it’s the virus, and I feel I have no control over it.” That loss of perceived normality was echoed by Pip, who lamented the loss of ‘life before diagnosis’. “I have less energy and cannot indulge in the things I could before, like sharing a drink with friends. It was isolating as well because I couldn’t tell everybody about my hep C.” Because of misinformation, one person felt the obligation to tell all her sexual partners that she had hepatitis C even though she
Interviewees identified two things that they thought would help newly diagnosed people emotionally: support services and information. “If I had the information then which I have now…” was a common refrain. “It would have been easier.” “I would have done things differently, changed my lifestyle.” “I wouldn’t have wasted those years.” “I would have told my family.” More information for health professionals, they said, meant patients got correct information and knew what they were dealing with. It also meant less discrimination from health professionals. Support services are vital because of the prejudice and misinformation surrounding hepatitis C. The informal support networks available to most people with serious illnesses are often not there for people with hepatitis C. This gap could be filled with ongoing counselling services and peer support groups. Together with education of health professionals and the general public, they could help reduce the isolation and unnecessary stress experienced by people newly diagnosed with hepatitis C.
The Hep C Mosaic Art Project Poster Launch
“Yeah, the snake one, that’s the best.”
“Did you see the totally sick snake?” Two of the drawings on the wall were by Steven. One of them featured a skull-headed snake, derived from a tattoo design, and he was not going to let anyone ignore it. “What do you think of the snake?”
For nearly a year a group of students at the Magill Flexi Centre have been working with Sharon Drage, the Hepatitis C Council’s metropolitan educator, and Gina Allain, an experienced visual artist and art therapist, on the Hep C Mosaic Art Project. This Commonwealth-funded program used an innovative mix of health education, harm minimisation information and involvement in visual arts to spread the word about hepatitis C and blood safety. Importantly, it also gave the participants a huge amount of practical experience in drawing, painting, collage and other visual art techniques. They even gained first aid certificates, learning about basic life-saving skills as part of harm minimisation.
Every Thursday the students would gather for morning tea and an information session. The latter would focus on a specific topic like not sharing injecting fits, or safe tattooing and body-piercing. They would then work on a piece of art—a different piece each week—which reflected some of what they had learned. From this powerful and striking body of work, a number of elements were then chosen to create two mosaics with the theme ‘Hep C not me’. A set of postcards and posters have been made from the mosaics and drawings to promote both the message and the work. “Mate, people better take a look at the snake!”
“There were more than twenty of us involved in some of it,” explained one of the other participants. “Two were here for the whole thing, start to finish. The things we did each week, sometimes we’d take them away and work on them in our own time, which was really good.”
Thousands of Tiny Pieces
“With the mosaics, they all worked together on what they wanted to do,” said Gina Allain. “From session to session they put them together. Sometimes they would get impatient with the process, just wanting to have the finished mosaics, but when you look at the result you can definitely see how it was worth it.”
At the launch, Magill principal Gerri Walker and Dr Rod Givney, director of the Communicable Disease Control Branch, both paid tribute to the dedication and skill of the participants. But the best summary came from Sharon Drage when she said, “Basically, you guys rock!” Anyone who has seen what the students have done, snake included, will agree.
Hepatitis C Community News Summer 2006 • 9
The End of Biopsies? Our last issue talked about the launch of the National Hepatitis C Strategy 2005-2008. One significant part of the strategy was the Federal Government asking the Pharmaceutical Benefits Advisory Committee (PBAC) to review the need for people to have liver biopsies before getting treatment for hepatitis C.
2b with ribavirin (Pegatron) and peginterferon alfa-2b (Peg-Intron) to remove the requirement for liver biopsy to establish eligibility for PBS subsidised treatment for hepatitis C. The recommendation is to also apply to the peginterferon alfa-2a with ribavirin (PegasysRBV) and peginterferon-alfa-2a (Pegasys).”
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.”
So what happens next? As this issue was going to press, no final announcements had been made. The PBAC explained that “some further steps are still necessary before the change to the listing in the Schedule of Pharmaceutical Benefits can occur, including negotiation of an acceptable pricing arrangement between the Department and the manufacturers concerned and approval by the Minister for Health and Ageing … the earliest that listing can eventuate if all the administrative processes are finalised without delay will be 1 April 2006.”
In November, PBAC considered the matter, and recommended that there be “a change to the restrictions for peginterferon alfa-
If the changes are made, the number of people eligible to
access treatment for their hepatitis C are expected to triple. Helen Tyrell said that “removing liver biopsy requirements [would be] a significant advance in the fight against this growing public health epidemic. We welcome and support this decision.” Associate Professor Greg Dore, head of the Viral Hepatitis Clinical Research Program at the University of NSW, also noted that, as “people with early liver disease often experience a considerable impairment to their quality of life, successful treatment will improve their day-to-day experience, prevent liver disease progression, and remove the anxiety associated with a chronic condition. With the majority of people undergoing hepatitis C treatment now being cured of their disease, improving access to treatment is a major public health priority for Australia.” So big changes may well be on the way. We will let you know of any developments.
Scary Muscles & Scarred Livers Steroid users are one significant group at risk of hepatitis C who are often forgotten. Part of the problem is that the typical steroid user—usually involved in competitive bodybuilding and the like—does not see themself as a “drug user”, and so does not take the appropriate harm-minimising precautions. This includes avoiding needle exchange outlets for clean injecting gear. Kay Stanton works as an outreach worker, or steroid educator, for the North East Drug Harm Prevention unit in Melbourne. She is a champion bodybuilder herself, and visits gyms across Victoria to provide information and clean injecting equipment to steroid users. Her connections, personal history and standing in the Australian bodybuilding field Hepatitis C Community News 10 • Summer 2006
have proved invaluable to her outreach work, gaining trust in places where an outsider would be viewed with suspicion or hostility. Starting out in 1996, she now has direct contact with more than 2,000 steroid users and a number of gym operators. Kay came to Adelaide in November to present an education workshop on steroids, hepatitis C and HIV. She pointed out that the pool of people who use injected steroids is quite diverse, including bodybuilders, weightlifters, models, police officers, security industry people, armed forces personnel and weekend sportspeople. Steroid use can lead to many health problems of its own, but when coupled with the risk of contracting a bloodborne virus its significance can’t
be ignored. Many users share and frequently re-use equipment (needles, bladders, steroid vials, etc), which also increases the transmission risk. The extent of the problem can be imagined from a study Kay ran in 2000. She blood-tested 63 steroid users from around Melbourne, and found that 10% had hepatitis C, though they had not known it. All of this shows the need for further work with steroid users as part of the ongoing process of educating the public about hepatitis C.
Unsafe steroid use: putting the ‘C’ into competition
Many of those who have hepatitis C have had bad experiences with some health professionals. Nurses or doctors who behave inappropriately, out of fear and ignorance, can easily make a difficult situation much worse.
HIV/HCV Policy and Programs and funded by the Commonwealth Hepatitis C Education and Prevention Initiative. The quality and breadth of information provided was matched only by the catering: vast amounts of food!
In a bid to counter this, Relationships Australia (SA) is running the HIV & Hepatitis C Worker Training Project, under the guidance of George Valiotis and Pamela Hansen. It aims to develop the capacities of workers and organisations to deliver helpful and comprehensive services to those affected by hepatitis C and HIV/AIDS. For nurses, they provide a free series of events each year, including introductory courses about hepatitis C, mental health training, guides to trends in illicit drug use, and information on working with challenging behaviours.
Some highlights were the presentations by staff from the Hepatitis C Council. Rural education and support officer Leslie Wightman gave an introduction to the transmission and prevention of hepatitis C, while Nicci Parkin explained some of the important issues concerning discrimination and the law. Doctor John Ring’s entertaining talk about hepatitis C and liver disease
In early December, there was a full day of lectures and presentations for nurses, intended as an introduction to the world of hepatitis C. This was initiated by
(which also included, bizarrely enough, trilobites) was an excellent example of how to present complex information in a clear, amusing way. The best part of the day, however, was indisputably the talk given by Michelle Morrison from the Hepatitis C Council’s ‘C Talk’ program. Michelle explained her own experiences as a hepatitis C-positive person, including her encounters with doctors and nurses, and her extremely difficult 48 weeks of treatment. Most importantly, though, she had found out only half an hour before getting up to speak that she had finally cleared the disease!
Dr John Ring’s talk: trilobites not pictured
Council News Homelessness, Health & Housing Expo: The 2005 version of the Homelessness, Health and Housing Expo was held at Whitmore Square in November. This multi-agency event was designed to provide information to members of the public and to act as an informal meeting venue for representatives from various organisations. Live music and a free barbecue brought in the numbers at lunchtime, and the ever-popular free tattoos went from the HCCSA stall like the proverbial hot cakes.
What’s New with Hep C? Leslie Wightman, the Council’s rural education officer, and Robin Gilligan, the HIV and viral hepatitis liaison nurse at the Flinders Medical Centre, ran information
sessions in December in both Bordertown and Naracoorte. Among the topics covered were the epidemiology and natural history of hepatitis C, transmission and prevention, standard and additional precautions, and numerous other areas. These were the latest in an ongoing series of events designed to better educate nurses and communities in rural areas about the nature and treatment of hepatitis C.
Getting It Together: Since October GIT has been experiencing as many changes as the weather! We lost community worker Gary Clarke, who moved on to a position with OARS SA, but the October training weekend brought another enthusiastic
member into our merry band. Mark Loughead from the Health Consumers Alliance of South Australia met with us to help plan for the next training weekend on 18-19 February. Other speakers in the October weekend included Anton Colman from the Royal Adelaide Hospital, Bill Gaston from MOSAIC counselling service and positive speaker Fred from the Hepatitis C Council of SA. We expect the February weekend to be an invaluable one for those looking for help with health advocacy and community representation. If you are interested in attending, please contact Michelle at the Hepatitis Council of SA on 1800 021 133 or email email@example.com. See more details inside the back cover. Hepatitis C Community News Summer 2006 • 11
Brief News Saliva Test for Hepatitis C
Hep C Mini-Movies
A few days before Christmas, a group of Israeli scientists reported that they had developed a test for the hepatitis C virus that requires only a saliva sample.
Produced by the Transmission project, made up of the Arts and Culture Program of the North Richmond Community Health Centre (NRCHC) and the Vietnamese Community in Australia (Victoria), two new mini-movies warning about risky behaviour have been made available on the net.
This test is easier to do, and much less invasive, than the current blood and serum tests. Significantly, it may even be more accurate than the current tests. It was 100% successful at detecting HCV in patients who had symptoms of infection, and 94% successful at detecting it in those who did not exhibit symptoms. The current serum test only detects HCV in 63% of those who do not show symptoms.
The project brought together a group of 13 young VietnameseAustralians from Melbourne, who spent three months on the project learning about hepatitis C, coming up with ideas, putting scripts together and shooting the videos. See the films and more info at http://www.hepctransmission.com.
Take a look at the extract from the Journal of Virological Methods at http://dx.doi.org/10.1016/ j.jviromet.2005.09.009 for more information.
Canadian Prison Tattoos New Books and Resources A series of valuable new resources have been launched in the last few months. Foremost is the Hepatitis Council of NSW’s excellent book, I Have Hepatitis C, What Could Happen to Me? It is available to download from www.hepatitisc. org.au/resources/inforesources. html, or else you can read a copy in the HCCSA’s library. The Hepatitis C Council of Queensland has also produced a range of useful resources about hepatitis C, food and alcohol. There are several fact sheets, as well as the brochure Hepatitis C and Alcohol: Am I Drinking too Much? and the Health Care Worker Guide to Nutrition and Hepatitis C book. Again, these are all available in hard copy form from the HCCSA, or can be downloaded from www.hepatitisc. asn.au/modcore/module_ download/frontend/. Hepatitis C Community News 12 • Summer 2006
The Canadian government has opened tattoo parlours in six prisons in order to help prevent the spread of blood-borne viruses. Trained prisoners with access to sterile equipment provide the tattoos for $5 each. Racist or gangrelated designs are banned. A spokesperson noted that there had been some criticism, but added that, “The bottom line is this is a public health issue. It’s harm reduction.”
Hepatitis C transmitted through needle-stick injury For the first time, hepatitis C has been contracted through a needlestick injury. A woman accidentally pricked her hand with a discarded syringe while cleaning in a Spanish mausoleum. After a series of tests it was found, four months later, that she had hepatitis C.
Useful Contacts & Community Links Hepatitis C Council of SA Provides information, education, support to the hepatitis C community and those at risk. 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€™s Hep C Info and Support Line for information on (08) 8362 8443 or, for rural callers, 1800 02 11 33 (freecall). MOSAIC 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 Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander people. (08) 8223 5011
Clean Needle Programs To find out about programs operating in South Australia, 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 user education, 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, counselling, 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
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 firstname.lastname@example.org and let us know. We rely on volunteers for many of our vital services.
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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