C
Hepatitis
Community News #36 • June 2007
Hepatitis C in the Media
Editorial
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Freecall: Fax: Web: Email:
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1800 021 133 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au
Hepatitis C and the media have an unhappy relationship. As everyone at the Council (and most of our readers) knows, it’s hard to get accurate information disseminated effectively, given all of the competing interests out there. It’s even harder when you’re competing against the wildly inaccurate hepatitis C ‘information’ promulgated by TV, movies, books, magazines, newspapers and the internet. In this issue, we look at some examples of how hepatitis C is represented in a number of different media, both positive and negative. There’s also exciting news about two HCV-focused theatrical shows coming soon to SA. We hope you enjoy it. Please let us know what you think. Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
STAFF Manager: Kerry Paterson Administration Coordinator: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Steve Lyn Will Mark Judy Anne Debra Janette Annette Michele Wendy Education Coordinator/Rural Education: Leslie Wightman Metropolitan Educator: Nicci Parkin Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Maggie Phil My Phuong Lyn Dean Publications Officer: James Morrison Librarian: Joy Sims
BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Treasurer: Thuy Huynh My Le Senior Staff Representative: Kerry Paterson Ordinary Members: Pamela Hanson Enaam Oudih Anthea Krieg Nick Taylor Carol Holly Lisa Carter
Correction Last issue’s article ‘Strategies for Preventing Liver Damage’ contained an error. Instead of stating that “…people with cirrhosis can develop malnutrition, and it is advised to have 1-1.5g of protein a day,” it should have said “…people with cirrhosis can develop malnutrition, and it is advised to have 1-1.5g of protein per kilogram of body weight a day.” We regret the error. See p16 for a letter in response to that article, and p14 for more on protein and healthy diets.
Contents Cover: Oliver afloat in a televisual sea, by James Morrison Focus on Hepatitis C in the Media 2 Where’s the Great Hep C Novel? 4 Hep C on Stage 6 The Bewitched Backlash Louie, Me and Hepatitis C 7 Llama Lashes & Grumpy Old Gits 8 9 Viral Confections Other Features 1 News 10 Experiences of Treatment 12 Looking at the Risks 14 Protein Matters 15 Hepatitis C Workforce Development 16 Correspondence Plus Brief News and Research Updates on pages 3, 8, 9, 14, 15, 16 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. In fact, we beg for them. “Well, I’ve wrestled with reality for 35 years, Doctor, and I’m happy to state I finally won out over it.”
The Man Alive! 2007 Certificate Award Earlier this year I heard that the Enfield Community Health Centre’s Man Alive planning committee were encouraging community members and service workers to think about men whose work and community participation they had found inspiring. They were seeking nominations for the Man Alive! 2007 Award. I nominated Robbie Noakes for his work as a Positive Speaker in northern rural communities and his contribution to supporting peer support for people in rural communities. The story about Robbie I contributed appears below. At the Man Alive! Festival, Robbie and a number of other men received certificates and prizes reflecting their nominations and congratulating them on their valuable contributions. Thank you very much to Pip Messent, Man Alive!’s project co-ordinator, and his planning committee for creating such an important health promotion event for men in SA, and thank you to Robbie for his valuable contribution to the work of HCCSA. A great man in my life is Robbie Noakes. Robbie first came into my life and into the world of the Hepatitis C Council in 1998. Generous, engaging, reflective, courageous, open and witty are the words that come to mind when I think of Robbie and the work
he undertakes with the Council. Robbie currently works (in a voluntary capacity) as a ‘Positive Speaker’ with the education team of the Council. In this role Robbie speaks to rural health and community workers about his personal experience of living with hepatitis C, providing important insight into experiences unique to people living in smaller, rural communities. Through Robbie’s presentations, workers’ attitudes are challenged and their practice is often sharpened in relation to people with hepatitis C. Being a hepatitis C ‘consumer health advocate’ is no mean feat for most people, but to take on this role in a rural setting is really something special. Robbie has also been an active participant in a recently established hepatitis C peer support network for people in rural communities. When Robbie first came to the Council, he was extremely unwell. He’d been unsuccessful on an early form of treatment for hepatitis C (interferon monotherapy) some years earlier. He came seeking new information and to link with others going through a similar experience. Over time, and re-energised by new knowledge, friendship and peer support, Robbie commenced treatment for a second time in 1999. This time it was successful. Leslie Wightman Education Program
Robbie (left) receives his certificate from John Rau, Member for Enfield
Get Linked Up!
council news
A Great Northern Man
Live in Rural SA? Do you want more information and support?
For the past four months, the Getting It Together Rural Peer Support Project has been experimenting with a new way of sharing information and linking people with hepatitis C who live throughout rural SA. The Get Linked Up service is a free monthly phone link-up that provides people with an opportunity to talk with others from rural SA, and to access easy-to-understand information about hepatitis C. The team behind the planning and facilitation of the link-ups bring a wealth of personal knowledge and understanding about hepatitis C, and really know just how difficult it can be living with hepatitis C in a rural community, dealing with misunderstanding and stigma.
Two of the team members, Robbie and Karen, participate in the link-up from rural SA, where they have lived for many years. Will and Lyn also bring a detailed personal knowledge to the service, and a comprehensive understanding of current hepatitis C information gained through their work on the Hepatitis C Council Info & Support Line. Anyone from a rural community who has hepatitis C can phone into the link-up free of charge and use the opportunity to ask questions and to share information and ideas. When: On the 4th Tuesday of each month; 1pm - 2pm How: For information about how to get linked up, call Lyn Green or Leslie Wightman at the Hepatitis C Council of SA on 1800 021 133 or 8362 8443, or email lyn.green@ hepccouncilsa.asn.au. Hepatitis C Community News June 2007 •
Internal Pages - June 07.indd 1
25/05/2007 10:47:00 AM
Where’s the Great Hep C Novel? Hepatitis C & Literature Writing about writing about hepatitis C has its problems (beyond the convolutions of that sentence). Most bodies of literature have a core of thematically strong works, and a fringe of associated books which cover the same concerns, but spread their focus wider. An obvious and relevant example is the AIDS novel. The AIDS novel developed through the 1980s and ’90s as an attempt to capture and commemorate the experiences of those who lived in the thick of the coming of the ‘gay plague’.
Looking beyond AIDS, there have been numerous works of fiction which explore mental illness. From the fainting, neurasthenic women of eighteenth- and nineteenth-century novels to the inside-the-asylum narratives of writers like Sylvia Plath, mental illness is a topic writers have been comfortable dealing with (though not always well).
Part of the problem is that, just as being ill for a long time is tremendously boring, so is reading about it, unless the writer, like Solzhenitzyn, is particularly skilled. Here is where the AIDS novel has its advantages. An AIDS story is also often a gay story, with all that extra potential, just as, politically, the AIDS lobby has always been closely allied with the gay lobby.
Physical illness, though, is something else entirely. Alexander Solzhenitzyn is a rarer exception— his excellent Cancer Ward, as you might expect, explores the
Hepatitis C as a subject for stories suffers in comparison because of the lack of any equivalent political force which has led to a distinct lack of any equivalent visibility. Everyone who lives with or works with hepatitis C knows about this. You might think that an associated group of novels—those about people who inject drugs—might involve hepatitis C. However, you’d be wrong. Many of the best novels in this genre are autobiographical, and set in the era before hepatitis C was known about. Those with more recent settings tend to simply ignore it. All of this means that there is no canon of novels or stories or plays about living with hepatitis C. Its appearances in literature so far are almost entirely ephemeral, and tend to fall into one of four groups.
To quote critic Lisa Garmire, many of these novels “sought to challenge cultural narratives about AIDS, including the authority of biomedicine, which, when it assigns an AIDS diagnosis, plots time in an apocalyptically mortal way, emphasizing the impending End”. In other words, a central character with AIDS did not have to be a character who died at the end of the book—contrast this with Hollywood treatments of the same material. Garmire’s Resisting the Apocalypse is an excellent guide to these works, and can be found online at www.geocities.com/ lisagarmire/index.html.
experience of living with and being treated for cancer. Otherwise, physical disease is usually just used as texture and colour: the cause of death of a lover to give the book’s main character a usefully tragic background, or perhaps a sick child to be saved by the hero in an exciting climax. Yet there is potential. As Jeffrey Meyers, author of Disease and the Novel, has said, “The creation of literature is one way of transcending mortality and celebrating human existence, despite the threat of death.”
Group 1: The Dreary List This is probably the most common way in which hepatitis C gets a mention. A character is in a mildly apocalyptic mood, and makes a list of everything wrong with the world. Hepatitis C gets a namecheck, usually alongside ebola. For example, here’s Janet Fitch’s Oprah-approved White Oleander: “Everywhere, people were frightened […] there was poison in supermarket toothpaste. Ebola, hepatitis C. Husbands disappeared on the way to the liquor store. Children showed up dead in ditches without their hands.”
Hepatitis C Community News • June 2007 Internal Pages - June 07.indd 2
25/05/2007 10:47:01 AM
Exploring narrative technologies Then there’s Dennis Lehane’s highly successful Mystic River: “Hepatitis A, B, and C, she thought. Ebola. Hot zones.” In the same vein, G. K. Wuori’s An American Outrage: “Wilma had never thought about insanity before, though she had thought about cancer, hepatitis C, Ebola, AIDS…” Group 2: The Minor, Minor Character Without being in any way central to the plot, someone might crop up for half a page, draw attention to the fact that they (or someone they know) are living with hepatitis C, and then fade away, never to be heard from again. As an example, see two characters discussing a relative in Mary Moody’s Best Friends: “He got hepatitis from a virus? I thought […].” “What? Didn’t Sally tell you? Sure, we thought it was alcohol, but there’s this new virus they’ve found, hepatitis C, and it turns out Freddie…”
of hepatitis C misinformation floating around. An example of the first type is from a man waiting in a hospital in Kate Atkinson’s detective novel One Good Turn: “He remembered reading somewhere how hepatitis C could live outside the body for a long time. You could pick it up just by touching something—a door handle, a cup, a magazine.” A particularly charmless example of the second is some manly chat from Robert Butterman’s At Your Cervix: “Clay, I wouldn’t f--- her with your d---,” I said sternly, “she’s hepatitis C positive. I ain’t going anywhere near that p----.” And years of hepatitis C education go down the drain. Group 4: Tacky Erotica There’s not really anything from this category that can be quoted here. If you must see some examples, five minutes of Google or Amazon book searching will show you that great literature about hepatitis C isn’t going to be found here.
Here is a bit of quick chat the medical hero has with a phone operator in Greg Iles’ bestselling 24 Hours: “I know about livers. I got a brother with hepatitis C. I’ll get this entered right away.” Finally, and also simultaneously demonstrating the use of the Dreary List, how about this from a drug user in the awful Terry McMillan’s The Interruption of Everything: “I know about diseases ‘cause I’ve got quite a few myself. Wanna’ hear ‘em? Herpes. Hepatitis C. Pancreatitis. And looka here: Alopecia.” Group 3: The Misguided Throwaway Remark These are usually one-liners used to establish character or as a fairly pathetic attempt at humour. In either case the one-liner serves to add to the already massive amount
The upside of the fact that nobody has yet written The Great Hepatitis C Novel is that the field is still wide open. Anyone who has spent time at the council knows there are numerous fascinating stories out there, and we try to bring you many of them in this magazine. None, yet, seem to have been transmuted into great fiction. Perhaps somebody reading this will be the first to give it a try.
What are narrative technologies? The term is used to describe ways of telling stories that are technology-based, like the photostories on our website (see www. hepccouncilsa.asn.au/dsmenu. html), animated stories, and other character-based storytelling formats that allow the storyteller to remain anonymous and still get down to the personal nitty-gritty. The Hepatitis C Council and Relationships Australia (SA) have joined forces to explore, investigate and experiment with these new technologies, and find out how useful they might be for hep C education. We have been successful in securing funding from LearnScope via the Australian Flexible Learning Framework. LearnScope focuses on professional development to enhance the skills and understanding that underpin electronic learning and electronic business. It provides funding for work-based professional development projects and encourages both individuals and teams to model sustainable practices in their own learning. This is ideal for us in recording and making available the stories and experiences of people living with hepatitis C. If you are interested in finding out more about this project, contact Nicci Parkin by calling the council or email nicci@hepccouncilsa.asn. au. If you have used these sorts of technologies and would like to share your wisdom with us, then we would love to hear from you. Stay tuned! We will keep you updated on this exciting project. Nicci Parkin
If you know of any examples of good “hep C fiction”, please let us know at newsletter@ hepccouncilsa.asn.au. James Morrison Hepatitis C Community News June 2007 •
Internal Pages - June 07.indd 3
25/05/2007 10:47:02 AM
Chopped Liver: Hep C on Stage Lynne and Jim could be anyone’s Aunt or Uncle. They’ve been married now for ten years. Pretty good effort—especially for Blakfellas! And they’ve both been around the block, working, protesting, in jail, partying, having kids. Now they’ve come home to country. But can they leave their past behind? They both need to face the facts. It’s about knowing that people with hep C are so much more than ‘chopped liver’. Chopped Liver is a darkly comedic play about hepatitis C, written by Kamarra Bell-Wykes and produced by the Ilbijerri Aboriginal and Torres Strait Islander Theatre Company in Victoria. When the
Hepatitis C Council of SA heard about it, we invited them to bring the play to South Australian audiences. They agreed, and will be performing here from 27 August to 7 September. Ilbijerri will be touring a number of metro areas in the first week, and to regional areas in the second week. The play is especially aimed at Indigenous audiences, and the HCCSA will be using it as part of our education strategy to bring people together, destigmatise hepatitis C a bit, and get people talking about the issues it raises.
Australia. Formed for and by the Victorian Indigenous community, Ilbijerri is a co-operative committed to producing innovative and challenging Indigenous works that speak to and reflect the lives, culture and history of Aboriginal and Torres Strait Islander communities. Ilbijerri also supports the professional development of Indigenous theatre practitioners through the creation of innovative and challenging theatre. Full details of the tour will be available soon. Performances will be free and catered—not bad!
Ilbijerri is the longest-running Indigenous theatre organisation in
Nicci Parkin
travelling, they’re travelling with this hep C virus and the play is about how their relationship with the virus changes over those 20 years. So hep C is actually another character in the play.
that they’ve got hep C, because not everyone is getting tested for it. I think the statistics they came up with was that 1 in 13 Victorian Aboriginals have tested positive, which is a huge issue. So it’s out there, it’s getting around. You might not even be aware of how you picked it up, but you’ve got it. It’s not about concentrating on how you got it, but how can you live your life day to day with it.
Writing Chopped Liver Kamarra Bell-Wykes is a Jagera woman. She wrote Chopped Liver, and here she explains the background and development of the play. Hepatitis C is definitely an unspoken epidemic. You can say that without exaggerating. It’s not often that you write theatre with a direct intent to do something. That’s what’s really different about this show. It’s trying to make our mob wake up and see what’s going on because Hepatitis C is really big. The play explores the issues around needle use and tattooing, attitudes, discrimination, relationships, peer groups, community attitudes, bullying and rejection, and myth busting. As the lead male actor says, “Knowledge is Power!” The play starts in 1988 and you’re taken along the journey of the two characters - Lynne and Jim - over 20 years to 2006. It’s about their stories. They’re from a small country town. Could be anywhere in Victoria. They move to Melbourne, and back again. And have a kid. But the whole time that they’re
Hepatitis C is something that’s from their past, in their youth. But now, 10, 15 years later, even though they’ve got kids, got jobs and living straight, it’s something they’re still living with. Mistakes they made unknowingly come back and haunt them and now it is about trying to live with the consequences. But it doesn’t have to be a negative, life-damaging experience. Things are what you make them, that’s what the show is trying to say. It’s also putting hepatitis C on the same par as diabetes and heart problems. Blakfellas have so many health issues already; so it’s just another one to add to the mix. But when we take responsibility and own these things, that’s when we can positively address them. Letting the disease just fester away is when it really takes control of you. And the big thing is a lot of our mob probably don’t even know
There are treatments available today; it’s not a death sentence, which is how a lot of people think about hep C - if they’ve thought about it at all. So how do you make a comedy about hep C? It was pretty scary realising we were talking about a comedy. It had been advertised as stand up comedy. And the comedy idea came from the limited money for the show--the idea of a travelling stand-up show--all you need is a mic, an actor and some words with comedy. It’s cheap. So it sort of started from there. But I just kept thinking to myself there’s nothing funny about hep C. I was freaking out thinking I’m going to have to give this money back, how am I going to write this
Hepatitis C Community News • June 2007 Internal Pages - June 07.indd 4
25/05/2007 10:47:06 AM
show? So I tried to open it in a different way.
talented and experienced) Kylie Belling is directing.
I started it with a joke - a really I worked with a reference group general, broad joke - that led of people from Ilbijerri, VACCHO me into the characters’ stories. and Hepatitis C Council of So the comedy is more in the Victoria. They got to give feedback, inherent way that Blakfellas have and that was a really tense couple of humour, rather than a traditional of days for me, waiting to see what stand up comedy. With this old everyone thought about it. But married couple the humour is in their relationship, and their Ilbijerri’s logo ways of talking, interacting with each other, with their community, with the outside world. That’s where the humour comes from.
Working with dramaturge John Romeril has given me a lot more knowledge about structure. I can see my writing really starting to mature now. I’m learning how to write for theatre, for the audience a lot more, rather than writing for the word. Chopped Liver has got some really nice time jumps and moments in it. I think when you’re writing something good, it comes out really fast and it sort of writes itself. That’s the beauty of having a purpose and a specific intent to what you write. It means you have to get it out. And working to a deadline it makes it easier; knowing I could only have two actors, a minimal set: OK, this is what you’ve got, these are the constraints. It’s only 50 minutes, so I think it’s really easy for an audience to watch.
Of course, there are some serious moments, and towards the end, the play leans more into drama than a comedy. But that’s the nature of the topic, and by remaining true to the issues and not glossing over them, the script and the characters are strong enough to carry the drama/comedy mix. Another exciting thing about this show is we’ve got Aunty Destiny Deacon and Virginia Fraser doing the photography and Steph O’Hara on sound design. That’s going to add another dimension to the performance because we’re going to have projections of photos that illustrate the story in the background. We’ve also got two great actors - Isaac Drandich and Melodie Reynolds, and the (very
something that needed to be taken on board. All criticisms are valid but some things you just have to leave out. You pick and choose which ones you’re going to take on--you have that right as a writer.
they gave really high praise; they had really been taken along the journey of the two characters. We made sure that it was controlled input. If there was a comment that kept coming up, then that was
There were moments where I thought, I’m not going to be able to do it, but I think it’s become a good little show and it will be really exciting to see how it all comes up.
Coming Soon: Meeting Reg - a play about hep C This brand-new play has been commissioned by Hepatitis Australia and will be having its inaugural season during Hepatitis C Awareness Week in October. Stephen House, an Adelaide playwright, has written the play with the aim of raising awareness about hep C and its impacts. Stephen consulted widely with people living with hepatitis C in order to get a feel for the issues. Stephen is a well-respected
playwright and it’s a real privilege to have his name on this project. Of his last play, A Thing Called Snake, dB Magazine wrote that Stephen “has a notorious preference for those addicted to a broad range of sexual and drugusing activities, from society’s underbelly. He writes with great sympathy and accuracy about their dreams and the petty power struggles between those able to pay for elicit pleasure and those
who have to sell it to survive.” Of an earlier work, Miss Blossom Callahann, critic Alex Wheaton has said that “House examines the driving forces behind his characters and brings them to the surface in his scripts, laying bare motives which in real life are most often kept concealed.” Stay tuned for information on how to get tickets to see Meeting Reg. It should be a good night out. Hepatitis C Community News June 2007 •
Internal Pages - June 07.indd 5
25/05/2007 10:47:11 AM
The Bewitched Backlash A case of hepatitis C in the cinema It’s a sad fact that the best-known recent case of “hepatitis C in the movies” was the pointless Nicole Kidman vehicle, Bewitched. A vapid idea for a film, it brought forth howls of scorn for using hepatitis C as the basis for a tacky joke. In case you haven’t heard about it, here’s what happens in the film. Shirley MacLaine plays a witch who wants to keep a guy’s interest when he is distracted by another woman. So what does she do? Magically forces the other woman to announce that she has hepatitis C, thus causing the man to be utterly repelled and come running back to Shirley MacLaine. Screenwriters Nora and Delia Ephron should have known better. The exact same joke would never have been allowed in a Hollywood movie if it had used HIV as the disease instead—and unlike hepatitis C, HIV actually is a sexually transmitted disease! But HCV is invisible to mainstream society as perceived by Hollywood. The result is both a crappy joke and another bit of dangerous misinformation doing the rounds. The then Australian Hepatitis Council was among the first to respond to the film’s release, stating that Bewitched encouraged discrimination against those living with hepatitis C. They noted that “because the public is so uneducated about hepatitis C, it apparently seems acceptable to trivialise this disease in a comedic context, at the expense of the 250,000 Australians who have hepatitis C, and the many millions more worldwide who are affected.”
chains were also contacted with a similar call to action. Sadly, but predictably, neither Sony nor the cinemas did anything. The manager of the UK’s Hepatitis C Trust spoke for many when he began his group’s campaign against the film. “It’s outrageous that a major Hollywood film should trivialize hepatitis C in this way. This is a potentially fatal disease affecting up to 200 million people worldwide and hundreds of thousands in the UK. The remark is unnecessary for the script and it’s tasteless, suggesting that people with hepatitis C are somehow lepers and only serving further to reinforce the stigma that blights the lives of those with this illness. It’s also extraordinarily ignorant. Hepatitis C is a blood-borne virus, not a sexually transmitted disease. This film highlights just how little awareness there is about such an enormously widespread disease and how essential it is that we change that.” The American Liver Foundation responded similarly. “Tragically, this remarkably tasteless comment plays into the stigma that many people with hepatitis C have to cope with every single day,” said Frederick G. Thompson, the organisation’s president. “I can’t imagine anyone in Hollywood making a joke about HIV infection, for example. The American Liver Foundation has received hundreds of calls and
emails from movie-goers expressing outrage and dismay.” A number of individuals in the UK also took matters into their own hands, leaving accurate hepatitis C information on every seat in several theatres screening the movie. The only consolation is that most people who were unlucky enough to have paid to see this film were resolutely unamused. Rather funnier than the movie itself, however, are these savage reviews: The Village Voice: “Unrivalled in modern times for smugness, vapidity, and condescension. To spend even 10 minutes in the movie’s universe is to experience the Sartrean nausea of an utterly hollow head and heart.” The Washington Post: “It sinks so deep and fast, you don’t even see bubbles on the surface.” The New York Post: “[An] unmagical, unfunny and un-romantic alleged comedy.” The Portland Oregonian: “A terrible, terrible movie. Its creators have a swell idea at the core, a wonderful leading lady, and several stalwart comic players in support, and they make of all of that a picture with the wit of an armpit fart, the verve of a boxwood shrub, and the appeal of a long night in an ER waiting room.”
The Australian Hepatitis Council called on the distributor of the film, Sony Pictures Releasing Pty Ltd, to include a public service announcement about hepatitis C at every screening of the film and to allow information about hepatitis C to be made available at every cinema screening the film. Cinema Hepatitis C Community News • June 2007 Internal Pages - June 07.indd 6
25/05/2007 10:47:12 AM
Louie, Me and Hepatitis C A case of hepatitis C on TV There’s a rare creature that has been spotted in both the UK and North America. It’s a TV documentary; a sympathetic, insider’s look at hepatitis C. Unfortunately there are, as yet, no plans for it to be shown in Australia. The film is Louie, Me and Hepatitis C. It was created by, and is about, film-maker Gemma Peppe, incorporating parts of a video diary she kept while being treated with pegylated interferon.
decided to go on to treatment. “I felt that, at my age, I’m too young to resign myself to a life of not working, or just working parttime. I don’t feel, for me, this is a full life. This is just half a life that I’m living. It really swayed my decision. It made me think, ‘I’ve got to give it a go.’” “The treatment was very like chemotherapy and by the end I was so debilitated that I could hardly leave the house.” The Louie of the film’s title is her son. He agrees that the treatment was an ordeal for both of them. “You’ve done well,” he says when she reaches the end. “You’ve been annoying, you’ve been horrible at times...but you’ve done well.”
Peppe was diagnosed with “nonspecific hepatitis” in 1988 after a bout of severe jaundice. For years afterwards she experienced liver pain, fatigue and other familiar symptoms. It was not until 2002 that she had a liver function test, and then a positive hepatitis C test. “When I heard that I had tested positive, my overriding emotion was fear,” Gemma wrote in an article for the UK National Health Service. She had used injecting drugs for a few months when she was 20, sharing works rather than needles, and was unlucky enough to contract the virus. “My lifestyle had involved lots of travel, not enough rest and regular drinking. Considering that—and how long I went undiagnosed—I was really lucky. The liver damage could have been much worse.” In the film, she describes why she
Unfortunately for Gemma, she found that the treatment had not worked. “I just have to hope that there will be another treatment that will work for me. Although I stopped the treatment a year and a half ago, I am still suffering from the side-effects.” Charles Gore, from the UK’s Hepatitis C Trust, said that the film “gives a remarkable insight into what it is like to have hepatitis C. It is also extremely moving— Gemma is so open about why she wants to undertake a year of often gruelling treatment, how important it is to her that the treatment works and the challenges of completing it. “Anyone who sees this film will appreciate how important it is for people with hepatitis C, and especially those on treatment, to receive adequate support and yet
how often that support is lacking. “But the film is not just Gemma’s personal story - it is also an examination of some of the major issues surrounding hepatitis C and in particular the problem of stigma. Gemma is unusually candid in disclosing that she contracted this disease through drug use but many people are scared to admit to having hepatitis C, even when they contracted it another way, and many more are dissuaded from getting tested. “As the film so vividly shows, stigma is damaging not just to individual lives but to the public health of the country, and it is simply the product of ignorance.” More information about Louie, Me and Hepatitis C can be found at www.hepcuk.info, and copies of the film can be ordered on DVD. However, we recommend that everyone writes to the ABC, asking them to obtain the rights to broadcast this documentary in Australia.
Write to: The Australian Broadcasting Corporation, ABC Ultimo Centre, GPO Box 9994, Sydney NSW 2001. James Morrison Hepatitis C Community News June 2007 •
Internal Pages - June 07.indd 7
25/05/2007 10:47:13 AM
Llama Lashes & Grumpy Old Gits The radio play is something of a neglected artform in the Twentyfirst Century. The weblog, or blog—debate on its merits as art aside—could probably stand to be a bit more neglected. Last year, though, the BBC brought the two together to make a very effective and unusual documentary about living with hepatitis C. “Don’t forget there are quite a few pillocks on the planet, some of whom you need to be rude to!” Devised by Anne Edyvean and Jonathan Myerson, Llama Lashes and Grumpy Old Gits takes verbatim extracts from real blogs to tell the story of how isolated individuals found each other online, and how they “laughed and raged and cried together through the highs and lows of treatment for hepatitis C”. “Well, hair continues to fall out, but I finally have llama lashes!” The results are fascinating. Those who tell their stories include a gay bell-ringer, a beer-loving engineer, a Canadian healthcare worker and a Muslim family man, among
Article and artwork by James Morrison
dozens of others. “It is not a dream – this Monday I have finally done the last injection, very smoothly, followed by a chocolate caramel bar!”
texture to the voices that tell the stories, as bloggers talk about how they contracted hepatitis C, share how they deal with self-injection, wait for test results, and wrestle with side-effects.
It’s also very funny, as well as being moving. Judicious use of music, from Jeff Buckley to Fleetwood Mac, helps to add
[Sings to the tune of ‘Unforgettable] “Undetectable, that’s what you are! Undetectable, my PCR!”
Where can I hear it? The play was originally streamed from the BBC’s Radio 4 website, but is unfortunately no longer available there. However, it can be downloaded from www.theboltons.plus.com/Llama_Lashes.mp3, or listened to online at blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=171492849&blogID=255326741. You can also borrow copies on CD from the Council library. Drop in any weekday during business hours.
Shorter treatments for HCV genotype 2? For patients with chronic hepatitis C virus genotype 2 who achieve a rapid virologic response at 4 weeks, 16 and 24 weeks of treatment with peginterferon and ribavirin are equally effective, according to researchers. “The recommended treatment for patients with hepatitis C virus genotype 2 is pegylated interferon and ribavirin for 24 weeks,” Dr Wan-Long Chuang, of Kaohsiung
Medical University Hospital, Taiwan, and colleagues write in the April issue of the journal Gut. The researchers examined whether a 16-week treatment with peginterferon and ribavirin is as effective as a standard 24-week treatment. Patients with genotype 2 were randomly assigned to 16 weeks or 24 weeks of treatment with peg-interferon and ribavirin. The subjects were followed for 24 weeks after the end of the treatment.
The initial response rate was 86% in the 16-week group and 87% in the 24-week group. The rate of sustained response was 94% in the 16-week group and 95% in the 24-week group. Both treatment arms were well tolerated. There were no serious adverse events reported. Both groups had similar rates of adverse events with the exception of alopecia, which was significantly higher in the 24-week group. Adapted from Reuters report
Hepatitis C Community News • June 2007 Internal Pages - June 07.indd 8
25/05/2007 10:47:16 AM
Viral Confections Hepatitis C as edible art Perhaps the most intriguing and certainly the most appealing example of hepatitis C in art has been created by Caitlin Berrigan. Her Viral Confections are handmade designer chocolates cast in the shape of the hepatitis C virus structure. Caitlin, who is based in France and New York, says that “These delicious truffles do not carry hepatitis C. Each one was lovingly handmade from 72% Belgian roasted cocoa in attempt to befriend the virus.” The chocolates were inspired by Caitlin’s discovery that more than 200 million people around the world live with hepatitis C. “Viral Confections is part of a series, Sentimental Objects in Attempts to Befriend a Virus. Living with a chronic virus can lead to a certain identity crisis in which one’s occupied body is seen simultaneously as enemy and victim; friend and abuser. “Weary of the rhetoric of war and fighting used to describe the
Left: Caitlin Berrigan constructing the chocolates Below: The finished product
illness, I wanted to domesticate my untamed virus by offering it comfort, bread and circus. Instead of starvation, I offer it delicacies. Instead of deprivation, I offer it handmade garments. Instead of exile, I offer it whimsical shelter. “These domestic objects are created in its image, based formally on the virus’s protein structure. Perhaps the virus will be seduced by its own vanity? Or perhaps we can construct our own survival out of its image?” The Be In Charge program resource folder is a chunky collection of information on important areas like working while being treated, discrimination, relationships, and so on.
Schering-Plough are the manufacturers of Pegatron, a pegylated interferon medicine used in hepatitis C treatment. They have recently developed and launched Be In Charge, a support program for people living with and, most particularly, being treated for hepatitis C. With the caveat that the information being supplied is from a corporation which makes money from promoting treatment, it must be said that Be In Charge is a very useful resource. It consists of a wide selection of printed and electronic information, along with phone and internet back-up.
The Be In Charge website, at www.beincharge.com, is divided into two areas: one for the newly diagnosed, and one for those starting treatment. Each provides basic and useful information and links. More impressive is the site’s hepatitis resource library, a collection of 31 fact sheets covering everything from skin conditions and mood disturbances to liver biology and available treatments.
More about Viral Confections and Caitlin’s other artwork can be viewed at www.membrana.us. James Morrison first week of treatment to the 6month post-treatment follow-up, each person on Pegatron treatment can opt to receive co-ordinated phone calls, mobile SMS messages and ongoing postal support made up of letters of encouragement, fact sheets and reminders. For more information, visit the Be In Charge website or talk to a treatment centre nurse. Remember that you can freely access the internet from the HCCSA’s library—come in any time during business hours.
However, for those being treated with Pegatron, it is the phone support which will be of particular use. There is a toll-free, 24-hour hotline to a registered nurse who specialises in hepatitis C and its treatment. Furthermore, from the Hepatitis C Community News June 2007 •
Internal Pages - June 07.indd 9
25/05/2007 10:47:23 AM
Experiences of Treatment Max Hopwood talks about his research into patients’ and health professionals’ experiences of hepatitis C treatment and its management. What was the context for choosing hep C treatment experiences for this research? There’s a real lack of evidence research about people’s experiences of treatment. There was a lot of research from the clinical perspective, which says things like people on treatment experience decrements in social and emotional functioning, but then they would move on to another point. You were left wondering what that meant on a day-to-day life experience level. So we thought that we needed to talk to people and get some of their narratives about what having “decrements in social and emotional functioning” actually meant for them. We also thought it would be interesting to look at the coping strategies people use to get through treatment. That was informed by the clinical research which says 10-50% of people fall off treatment in clinical trials. There was evidently a lot there that had not been broached in the clinical literature and required social researchers to pick this stuff up. Who did you interview for the study? The people were either currently on or had finished treatment within the last six months. We also interviewed professionals—we ended up talking to five clinical nurse consultants and one social worker. We wanted to talk to the social worker because they had perspectives on issues like hep C and discrimination, and disclosure issues. We wanted to talk to people who had finished treatment because we were aware that lots
of people were experiencing after-effects from the treatment as well. However, that was not something picked up in the report, unfortunately—we couldn’t fit everything into the report. Hopefully that will come out in a publication in some other way. How many people did you actually interview? This was in Sydney, and we talked to 20 people who were on or had finished treatment. They were from three large liver clinics—obviously I can’t say which ones because of confidentiality issues—but they were inner-urban Sydney clinics. What were some of your main findings? People gave us a diverse range of narratives about their experiences. Some people had very minor sideeffects and very minor disruptions to their daily life. They weren’t particularly affected by treatment. It was a spectrum, though—there were people absolutely fraught with emotional and physical ailments directly related to their treatment. The big issues were disclosure—we had no idea that just disclosing about being in treatment would be such a big issue. Disclosure was probably the issue that everybody spoke about, that everyone said, yes, they’d had problems about it. The other major issue was the sideeffects themselves, and the coping measures deployed. Some of these were more medical interventions offered to them by the consultants and social workers—you can take sedatives if you can’t sleep, you can take antidepressants if you are depressed, you can take painkillers for flu-like symptoms—all the way through to this other group of people who were eschewing all those things, and who were relying on their own resources to get through treatment. For social researchers this was
very interesting, as they were actually capitalising on their past experiences of hardship, whether it be depression, or alcohol and other drug-related issues. The whole idea of resilient coping was a really strong feeling, and we didn’t hear any of the healthcare workers talking about it much, although a couple of people did mention that some of their clients were very experienced at managing pain, for example, and very much able to put up their hands and say they needed help in relation to counselling, whereas other people, who did not have previous experiences of adversity, were much more reticent about asking for counselling. They were people with histories of alcohol and other drug use who were most at home with accessing social services, resources available in their community, and the rest. That was the study finding we got most excited about, because we think that health professionals can use that sort of information and devise strategies or assessment procedures to find out whether there are elements from people’s lives where they have learned to deal with that, from previous periods of hardship. Now this is done via something called strength-based assessment, which is a simple assessment device. You really just ask people what they did in previous periods of hardship, and also asking them about how well they are plugged into the social services in their community—if, in fact, there are any social services in their community, do they know how to access them? We would like to see, out of this research, healthcare workers doing more about connecting people to those services, and also drawing on past experience to get through treatment. So to support people on treatment really takes in a lot of different
Hepatitis C Community News 10 • June 2007 Internal Pages - June 07.indd 10
25/05/2007 10:47:25 AM
services. It’s not just the clinical nurse and the clinician? Potentially that’s right, yes, because people have been telling us it’s more than just what they can get from the clinic. Though people spoke glowingly about their management at the clinics, they also talked about whole areas those clinical workers hadn’t broached. Anything else you’d like to add about other implications from the study? Only that I think that treatment needs to be seen as a journey which is, for some people, quite difficult and, for others, really not. It’s not something to be scared of, but to take on with as much knowledge and information as you can get before going in. You make sure you actually need treatment. There are issues there—obviously it’s great to try and get everybody into treatment, but sometimes perhaps there are people who don’t need to be going through it just at the moment in their life; they’re young, et cetera, and they might be better leaving it for a bit.
no reason, nothing had upset me that day. Suddenly I just thought, ‘Everything fucking sucks’ … just all these horrible thoughts were going through my mind and I got really weepy and upset. I hated everyone. I thought of all my friends and they just sucked. I hated my job. Monica: I got great support from the psych doctor over there who put me on some antidepressants which helped me to sleep and do all that; and I’ve never been a pill-popper but I’ve got to say I was very thankful for those. It kept me at an even plane … They [antidepressants] were essential; I don’t care what anybody says. Monica: And I think you have got to have support … [Y]ou’ve got to be really able to take the whole thing on to start with. You’ve got to psych yourself into, ‘No matter what, I’m going to stick to it,’
because it’s a very easy thing to fall out of. Nurse3: A lot of them are trying to take the positive out of it and, at the time with them, there’s selfrealisation as well … Really a lot of them use it as an opportunity to turn their life around and, ‘I’m going to cure the hep C as a change for the better.’ Monica: I think support groups are very good … You talk about everything that you go through or what you’ve gone through … And I think that having the two [facilitators] there to work it so that it goes around to everybody and everybody gets a chance just to speak or to listen to what they want to hear, or if there are new people coming on the program, just to hear from other people. James Morrison, from an interview by Kerry Paterson
Max Hopwood and the report
The report can be downloaded from http://nchsr.arts.unsw.edu. au/pdf%20reports/HepCtreatment. pdf The following are excerpts from interviews in the report. Gerry: There were only two drugs [that I received] and it’s really hard to decouple, you know. I mean, I’ve only tried the combo [pegylated interferon and ribavirin] and I can’t separate the direct psychological effect of the drugs from the fact that the physical side effects have a psychological effect. Kate: But the second week or so, I just crashed. I had like a depressive episode, a really bad depressive episode. And it was at night. I remember I was home by myself and I don’t know, it just sort of came over me. There was Hepatitis C Community News June 2007 • 11 Internal Pages - June 07.indd 11
25/05/2007 10:47:29 AM
Looking at the Risks Lisa Maher discusses her recently published studies Associate Professor Lisa Maher of the National Centre in HIV Epidemiology and Clinical Research was involved in running two recent studies. Study 1: Incidence and risk factors for hepatitis C seroconversion in injecting drug users in Australia Published in the journal Addiction (Volume 101, Issue 10), this study set out to determine the incidence of hepatitis C virus infection in injecting drug users, and identify the risk factors for seroconversion (the development of antibodies to hepatitis C and the presence of virus detected by RNA testing). Associate Professor Lisa Maher and her colleagues approached a total of 584 injecting drug users in NSW and screened them for the study. They were looking for people who had no antibodies to the hepatitis C virus (HCV), and who had injected drugs in the previous six months. Of those screened, 368 were enrolled into the study—215 of them urban dwellers, 105 from rural areas, and 48 from regional areas. The participants were followed up between one and eight times, with 68 participants undergoing seroconversion during the period of the study. The independent predictors of seroconversion (in other words, the factors most likely to lead to it) included being female, injecting cocaine, and being new to injecting drug use. It was also the first study outside North America to report a strong association between the sharing of drug preparation equipment and HCV infection. The study’s authors note that “the absence of an effective vaccine, high background prevalence, high viral infectivity and poor treatment uptake among current IDUs suggest that current harm reduction measures will not be enough to reduce HCV incidence”. They call
for the revitalisation and scaling-up of harm reduction programmes, and especially for the increased availability and accessibility of both sterile injecting equipment and disposal facilities. As they conclude, “our results suggest that while the prevalent population remains large and highly viraemic and the majority of susceptible populations are young, new IDUs, even relatively low levels of injection-related risk behaviour will serve to sustain the current epidemic”. Study 2: High hepatitis C incidence in new injecting drug users: a policy failure? This study, published in the Australian and New Zealand Journal of Public Health (Volume 31, Issue 1), focuses on a subset of the participants in the ‘Incidence and risk factors…’ study. It draws the conclusion that the incidence of hepatitis C viral infection among newcomers to injecting drug use in Sydney is unacceptably high. Incidence of HCV seroconversion (the development of antibodies to hepatitis C and the presence of virus detected by RNA testing) among new IDUs in Sydney was significantly related to shorter duration of injecting, being female, being of a non-Anglo background, and using cocaine intravenously. For people who had been injecting for less than a year, the average time until seroconversion was around 4 months, which demonstrates that there is a very small window of opportunity to intervene with HCV prevention efforts. The report concludes that “despite the widespread implementation of harm reduction initiatives in Australia since the late 1980s, young IDUs and new initiates remain at extremely high risk of hepatitis C infection … effective prevention strategies need to be tailored to local communities and
particular subpopulations whose risk factors have been examined and assessed.” Lisa Maher talked to us about the methods and results of her research into the incidence of hepatitis C in injecting drug users. Research Methods “It’s taken a long time to get the data sorted and cleaned and analysed and written up. “As with all types of research, the question comes up about generalisability—how representative of the underlying population is the group that you studied—so we tried to use as wide a range of recruitment strategies, methods, and techniques as possible. This was so that we could access as broad a population of injecting drug users as possible. We recruited through NSPs, through street-based outreach, vending machines, flyers in fit-packs, and through public methadone clinics as well. “We could have used clinic cohorts, where people have different tests at different time points, but the way we ran the study was the most rigorous methodology for looking at incident infections in the community. “Apart from the epidemiological arm, which is looking at the risk factors for hepatitis C infection, we also had an ethnographic or a qualitative arm, which involved a lot of interviews but also a lot of observations of people injecting drugs in natural settings. “We used the information which we gleaned from what was actually 158 hours of observed injecting episodes. We used the data that we got from that to inform the development of the instruments that we used in the cohort part of the study.
Hepatitis C Community News 12 • June 2007 Internal Pages - June 07.indd 12
25/05/2007 10:47:30 AM
“Looking for the risk factors in 1999 there was a lot of talk about sharing injection equipment being associated with, and being a vehicle for, the transmission of hepatitis C, but there was no proof at that time. We wanted to look at all those risk factors, including looking at injecting equipment other than needles and syringes. “We needed to actually look at how people were injecting, what the context was, what they were doing in those episodes, so that we were asking the right questions. We had informed consent, and it was approved by the ethics committee. We weren’t allowed to pay people. Where people were going to inject drugs, usually in street settings but sometimes in homes or off-street locations, we accompanied them and filmed them.” The Second Study “The data there was a subset of the greater cohort which was gathered in 3 sites. The data there was a subset from the south-west Sydney site. That group were all aged under 30, or had been injecting for less than 6 years.
“We saw young people doing some really risky things from early on in their injecting career, but we had no idea that the incidence would be so high, or that those factors would be so strongly associated with seroconversion to hepatitis C.” Conclusions “The fact that we have an epidemic of hepatitis C in injecting drug users doesn’t necessarily mean that NSPs aren’t working, but I think some of the implications of this study point to areas where we could be doing things a bit better. “We should be expanding coverage and access to NSPs in relation to young people who are at risk of, or just starting to, inject, rather than picking up people later in their injecting careers when they may have already been exposed and infected. Particularly for young people from culturally and linguistically diverse backgrounds, and particularly young women who our data shows are
at greater risk of infection in that initial period. “Education is an important part of it, but in terms of NSPs we need to be creative about innovative ways of reaching young people … not just reaching them, but engaging them in prevention activities, particularly peer-based activities, peer-based education. “Perhaps things that are not directly about injecting or directly about hepatitis C, but about health maintenance and health promotion more generally, need to be considered. We need increased resources allocated to prevention, especially NSPs, but not just more of the same. “Ensuring coverage is very important—there are still huge gaps in coverage, like evenings, weekends, public holidays in many areas—so, of course, people are still reusing equipment.” James Morrison
“The risk factors for that group were being female, intravenous cocaine use, being from a culturally and linguistically diverse background, but also a group at particular risk of incident infection were those who had been injecting for less than a year. “We knew from the process of doing the study that we would quite often interview someone who had just started injecting and so we would take their baseline bloods from them, and sometimes those people would be positive from within a week of starting.
LISA MAHER: “We should be expanding coverage and access to NSPs in relation to young people who are at risk of, or just starting to, inject [...] Education is an important part of it [...] We need increased resources allocated to prevention.” Hepatitis C Community News June 2007 • 13
Internal Pages - June 07.indd 13
25/05/2007 10:47:32 AM
Protein Matters Living long-term with hepatitis C I believe that it is possible to optimise health and limit liver damage by living a healthy lifestyle. Diet is a vital component in this lifestyle mix. When living with a chronic illness, protein in the diet becomes particularly important as protein provides the amino acids to power the immune system. Proteins also provide the architecture for every body cell. I’ve been told by dietitians that we normally need to eat 1.2 grams of protein per kilogram of body weight every day. So if someone weighs 60kg, they need 72g of protein each day. That would be three meals, each containing approximately 24g of protein. That’s a lot of protein! To calculate the protein content of food, the skill of reading labels becomes important. The internet is another source of information, as can be the frozen food cabinets in your supermarket. I have made myself a protein counter, which is an updateable booklet I consult to calculate how much protein I am actually consuming with meals. Naturopaths and dietitians recommend using protein powder as a supplement, as it is easily digested, relatively cheap and also highly palatable. Regular use definitely increases energy and stamina. It is an invaluable experience to consult a dietitian, as people can have very different dietary needs.
Man Alive! 2007 The sun was shining, kids paraded about with giant puppets and live music filled the air. Man Alive! 2007 at Semaphore beach was a wonderful way to start the Council’s info stalls for the year. We were snowed under with requests for temporary tattoos as the queues of eager kids built up.
Dietitians are available at public hospitals, and one is also available at O’Brien Street as part of the Care and Prevention Programme. Dietary and lifestyle information is also available from the Health Promotion Unit in the main entrance foyer of the Royal Adelaide Hospital. Many of us, as we age, do tend to cut down on eating meat—especially red meat. Iron levels can increase as a part of the ageing process, especially in postmenopausal women, and levels can also increase with liver damage. It can be worth including an iron level reading in liver function tests. Following a low-meat diet means that a working knowledge of protein values becomes even more important. I include an example of calculations for one meal. Breakfast Food Protein value Yoghurt (natural low-fat Vaalia), 175g 10.0g Muesli, 50g 4.6g Grated apple (half) 0.5g Subtotal: 15.0g 1 tbsp soya protein powder, 10g 8.8g 250mL high-fibre soya milk 7.5g Subtotal: 16.3g Total: 31.3g I’m well set up for a day of stamina and energy! Eve Doley
Some stars in the protein field (protein per 100g serve) Broccoli Brown rice Corn Skim milk High-fibre soy milk Noodles (egg-white, high-protein) Red lentils Salmon (red, tinned) Sardines Soya protein powder Yoghurt (low-fat, Vaalia natural)
4.7g 7.3g 3.3g 3.3g 3.0g 10.5g 11.5g 21.8g 18.3g 88.0g 6.0g
Our giant liver O’liver made an appearance (thanks to Megan) and made all the little kids cry until Fred placated them with brightly coloured balloons. It was a pleasant day for all the stall workers and we even managed to talk to people about hepatitis C! Lyn Green
Hepatitis C Community News 14 • June 2007 Internal Pages - June 07.indd 14
25/05/2007 10:47:34 AM
Needs assessment results As we all know, hepatitis C is a major public health issue affecting South Australia. Therefore it’s very important that those working in health and community settings with those most at risk of hepatitis C are knowledgeable, skilled and confident when it comes to dealing with hepatitis C. This year the Hepatitis C Council of SA began a “needs assessment”, looking at the professional development and training needs of the workforce who engages with the hepatitis C priority population groups. As identified in the National Hepatitis C Strategy 2005-2008 the hepatitis C priority population groups are: • people who inject drugs, especially • young people, • people from culturally and linguistically diverse (CALD) backgrounds, and • people in rural and remote areas; • people in custodial settings, and • Aboriginal and Torres Strait Islander people who engage in ‘risk’ behaviours.
The aim of the project is primarily to inform the planning of the Education Team of the Hepatitis C Council of SA (HCCSA) in order to work more strategically and systematically with the priority population workforces, and to respond according to their workforce development needs as identified. We received 105 surveys from health and community workers. They told us about what they know about hepatitis C, and what learning they would like to improve their skills. In summary, some key findings of the research were as follows. •
•
•
Generally the workforce who engaged with injecting drug users were well informed, confident and regularly engage with clients about hepatitis C. We received very few responses from the youth workforce, suggesting that hepatitis C is not seen as a priority amongst this group. CALD and Indigenous workforces reported a higher level of difficulty accessing
•
information about hepatitis C compared to other workforces. The reported level of knowledge and confidence about different aspects of hepatitis C (e.g. treatment, testing, discrimination) was highest amongst the injecting drug user workforce and lowest amongst the prison workforce.
council news
Hepatitis C Workforce Development
This survey will now inform the planning of the Education Team, and also has implications for other organisations which have an interest in hepatitis C training and development. The results from this survey will be presented at the National Hepatitis C Health Promotion Conference in June this year so other education and training services can learn from the South Australian experience. This is particularly important as the conference’s central topic is ‘engaging communities’. A complete copy of the results can be found on the HCCSA website (www.hepccouncilsa.asn.au) or in the HCCSA library. Kristy Schirmer
Why do people defer treatment? A new study published in Digestive Diseases and Sciences investigates the reasons why patients with chronic hepatitis C decide to defer treatment, and whether they alter their decision with time. To quote the study: “The most common reason for opting not to receive treatment, given by nearly two-thirds of patients, was the asymptomatic nature of their infection coupled with their concern about side effects of the medications. Approximately 10% had unfavourable social situations, including a lack of support or health insurance, that precluded receiving therapy […] Only five patients (4.3%) cited doubts about efficacy as the main reason that they did not want to be treated.”
The study, which focused only on Americans, concluded that “a significant proportion of patients infected with hepatitis C virus who are otherwise eligible for therapy opt to defer treatment […] Nearly all of our patients were genotype 1 with clinically and histologically mild hepatitis of reasonably long duration. Our questionnaire survey found that most remained satisfied with their decision to defer treatment at the present time.”
Hepatitis C Community News June 2007 • 15 Internal Pages - June 07.indd 15
25/05/2007 10:47:40 AM
Letter (In response to ‘Strategies for Preventing Liver Damage’ by Linda McInnes, in our last issue – Ed.) I thought your article shows the kind of thoroughness it takes to be a good researcher, and more discipline than I could muster in that role. The overwhelming message that comes across, reading between the lines, is that so much relating to HCV outcomes is (potentially) under one’s own personal control, and that the relationship between unhealthy habits (whether pharmaceutical, dietary, environmental, etc) and sickness is much more than coincidental. Too many people I’ve known have assumed that, because they have hepatitis C, what they themselves do (booze, junk food, hepatotoxic drugs) doesn’t matter, or is trivial by comparison. Nothing could be less true. Another false assumption is that, because a doctor knows a patient has hep C and prescribes a drug for that patient, it can’t be harmful to the liver or aggravate the condition. Unfortunately, there is no real research into drug/hep C interactions. The usual assumption seems to be that a drug, in doses that do not damage a healthy liver, will be safe in HCV, and this logic is badly flawed. Drugs such as paracetamol and disulfiram put a serious strain on an already depleted antioxidant system. For example, Disulfiram works by inhibiting the antioxidant enzymes responsible for the breakdown of acetaldehyde, the oxidising er Damage Preventing Livstudy Strategies forines a comprehensive
in one study they Riley notes that G in patients with fOR SLOWIN found that alcohol cirrhosis to STRATEGIES cause TO CIRRHOSIS hepatitis C can virus PROGRESSION can cause the develop faster, affect the immune progression rate to replicate, can In Australia the interfere with iron 7% in 20 years system and can to cirrhosis is W tion of the liver. (HCCNS regenera years. content and and 20% in 40 s the response & Advisory Alcohol also decrease been found Medical Research now has It . to interferon Panel, 2005). the toxicity of that alcohol increases cause steatosis tion is can consump vitamin A, which oidal fibrosis Alcohol: Alcohol ion a a faster progress to be used as (fatty liver), perisinus chronic associated with Although intended it can result lesion), the information cirrhosis, and (a vascular liver reference for GPs, people towards carcinoma (liver is valuable for hepatitis and cirrhosis. in hepatocellular Even small in this article C. It looks at the cancer) and death. can cause with hepatitis you are not immune g to the Vaccinations: If nded amounts of alcohol and where hepatotoxic (damagin remedies, B, it is recomme herbal to the liver, to hepatitis A or d against liver) effects of and damage with hepatitis ions, alcohol that you be vaccinate are hepatitis possible people stop vitamins, vaccinat not included to who ged I have these. All patients checked C should be encoura medications. be ely. technical C-positive should drinking complet some of the more to total antibodies material related for hepatitis A information, or surface and core hepatitis C. and hepatitis B d vaccinate conditions besides be not To antibodies. risk. to put oneself at against these is co infected people, In one study of was 35%. the mortality rate
Linda McInnes
exam
know with hepatitis Most people I do what they can C worry about their the progress of to slow down studies have illness. Very few issue and of those looked at this only one looked that I could find (Riley, 2001at it in great depth part 1 & 2).
daily).
Hidden
concealed nasties.
ity News
Hepatitis C Commun 12 • March 2007 Internal Pages.indd
I know of one acquaintance who had to have a liver transplant soon after being prescribed Antabuse in HCV to prevent him drinking— alcohol would have done less harm. He died soon after this. Obviously the Antabuse would not have been prescribed if his liver had been failing already: it was the cure that killed him. This kind of outcome is the result of doctors and patients accepting reassurances as to the safety of drugs from their manufacturers—of course they will minimise their adverse reactions, diseases and addictions. Any intelligent adult is capable of researching and deciding for themselves the suitability of any treatment, and the person who has a disease is best placed to decide what is and isn’t acceptable as a risk or sideeffect. People with HCV who’ve taken paracetamol often have an understanding of its unsuitability which doctors are unable to comprehend. To only ask a doctor, who gets his information (and education) from the pharmaceutical industry mainly, or to assume that his silence reflects a considered judgement, seems like negligence when it comes to such an important decision—like buying a car without looking at it.
Hepatitis C increases risk of non-Hodgkin’s lymphoma American research on US military veterans, published in the Journal of the American Medical Association, has found that hepatitis C infection boots the risk for non-Hodgkin’s lymphoma by 20%-30%. The researchers, led by Dr Thomas Giordano, tracked more than 140,000 hepatitis C-positive veterans and almost 600,000 non-hepatitis C-positive veterans to make this determination. These subjects were almost overwhelmingly white and male. They also found that HCV infection triples the risk of developing a rare variety of non-Hodgkin’s lymphoma called Waldenstrom’s macroglobulinemia, as well as other abnormal blood/antibody conditions. “Although the risk of developing lymphomas is small,” Dr Giordano said, “our research suggests that screening of HCVinfected individuals could identify conditions which may lead to cancer. It might then be possible to prevent progression to lymphoma.”
George D. Henderson
ions: Many people Toxic Medicat C also suffer from with hepatitis or disorders other illnesses them to take which require medications medication. Many ion and over-the (both prescript the quite toxic to counter) can be that, 1). Riley notes Box liver (see paracetamol on for example, takingor with alcohol stomach an empty Eating regularly can be harmful. as well as help this avoid will help on other medicati you absorb any If you are taking. or supplements still paracetamol is you are in pain, with a safe dosage the best option, (2g four times a day being 500mg
a may contain dangers: Echinace
product of the breakdown of alcohol. Acetaldehyde is far more toxic to the liver than alcohol, but even in the absence of alcohol the body produces it, especially in hepatitis, as it is one of the toxic products of lipid peroxidation, along with the closely related malondialdehyde. Thus Antabuse elevates levels of both acetaldehyde and malondialdehyde, speeding up cirrhosis, and allows the build-up of other toxins, which also cause more acute toxicity.
and Hepatotoxic Vitamins and Many vitamins Supplements: to cause damage supplements can ng on the dose. the liver dependi that the USA found One study in in a of the patients up to one third remedies. herbal used liver clinic hepatotoxic One of the most A, and anyone vitamin is vitamins A supplements taking vitamin that doses higher should be aware units) (international than 25,000 IU
Note: This letter has been substantially edited for length, and does not reflect the views of the Hepatitis C Council of SA.
A possible lymphoma
AM 23/02/2007 10:09:32
12
Hepatitis C Community News 16 • June 2007 Internal Pages - June 07.indd 16
25/05/2007 10:47:42 AM
Useful Contacts & Community Links Hepatitis C Council of SA Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. Call the Council’s Info and Support Line for information on (08) 8362 8443 or, for rural SA callers, 1800 02 11 33 (freecall). MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds. (08) 8223 4566 Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic. (08) 8223 5011
Clean Needle Programs To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340 Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809 SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 1699 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program. (08) 8447 8821 The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can 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 people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611
Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services. The Council offers a meeting room suitable for workshops, presentations, formal and informal meetings. It is a spacious area suitable for up to 30 participants.
Meeting Room Hire at the
The room has modern, self-contained kitchen and bathroom facilities. It also contains an electronic whiteboard, and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability). Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.
Community members affected by hepatitis C are encouraged to use the room at no cost.
Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au
Become a
member
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. A strong membership of people affected by the virus is essential to our work. Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071 or fax: (08) 8362 8559.
Your details Member type (tick one) Title
New
Renewing
Name
Occupation Organisation (if applicable) Mailing address
Postcode
Phone Fax Email
Membership type FREE! FREE!* FREE!*
Individual Membership Professional Membership Organisational Membership *
For appropriate forms, please call us
Donations Would you like to make a donation?
Yes
If yes, how much?*
$
No
*GST does not apply. Donations over $2 are tax deductable.
The Hepatitis C Council of South Australia Inc. is aware of the need for privacy and endeavours to comply at all times with the Privacy Act 2001. As such, any information provided by you is accessed only by authorised personnel and will remain strictly confidential. To change or access any personal information we hold about you, please write to the Manager at the above address. ABN: 38 030 552 547 Tax invoice – please retain a copy for your records.
Proudly supported by: