#48 Hep C Community News

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Hepatitis

Community News #48 • June 2010

Hepatitis Awareness Week 2010

I ♥ My Liver

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

Street: Mail: Phone:

Fax: Web: Email:

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

Hepatitis Awareness Week in South Australia saw the launch of an excellent new website on liver health: I ♥ my liver.

Designed to be a straightforward and easy-to-use guide to the liver, what it does, and how to keep (or make) it healthy, I ♥ my liver features simple guides, animations and other videos, and links to further resources all over the country and the world. It also ties in with the new liver health book for children, Meet O’liver… (see page 15).

I ♥ my liver is easy to find online: just visit www.k3myliver. org.au or www.ilovemyliver.org.au.

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Will Debra Michele Coordinator of Education Programs: John McKiernan Educator: Mahdi Nor Rural Educator: Kirsten Kennington

About the Cover

Peer Education Coordinator: Maggie McCabe

Highlights from Hepatitis Awareness Week 2010

Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Gauri Karan Mark Phil Philip Yvonne

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

Publications Officer: James Morrison

Contents

Info and Resources Officer: Rose Magdalene

1

C-Pix

2

Latest News

3

New Country, New Food

4

Hepatitis Awareness Week

5

The Health Minister on Hepatitis

6

Undercover Treatment

9

New National Health Strategies

10

Treatment Discussion Part 2

13

Profile: Eric Gowans

14

Research Update

15

Love Your Liver Lunches

16

O’liver & Co.

ICT Support Officer: Bryan Soh-Lim Project Officer: Caitlin Dowell Librarian: Joy Sims

BOARD Chairperson: Arieta Papadelos Vice Chairperson: Kristy Schirmer Secretary: Stefan Parsons Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Catherine Ferguson Bill Gaston Carol Holly Shabeena Laundy Justine Price

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.

“A question! Who? What? A moment ago you were calling me Sir, in fear and trembling. Now you’re asking me questions. No good will come of this!”

T

he Hepatitis C Council of SA produced the C-Pix project after being inspired by the Hepatitis C Council of NSW’s 2009 Street Shot project.

The concept of the photo essay is used as a way for young people to communicate their ideas about risk and hepatitis C. Through art, text and photography, our participants explored issues including injecting drug use, backyard body art practices (such as tattoing, piercing and scarification), and the social and emotional impacts of hepatitis C (such as isolation, depression, stereotyping, shame and stigma).

this age of information we are grappling with the interpretation and comprehension of a virus that is part of youth culture wherever blood-to-blood transmission can occur.

The eclectic and diverse visual dialogue that occurs in this show is a valuable snapshot of where young people are in this moment in time: pondering the reality of injecting drug use, insecurity, poor health and alienation amongst our youth. Hepatitis C has been a part of our lives forever, and it is now present for us to view and see how

aware we really are to its impact upon our future generations.

The photo essays in this art exhibition are brave, raw and very real, like the young people who created them and took action to educate themselves about hepatitis C. Young people are great motivators and communicators particularly amongst themselves, and we are fortunate to share in their work that will go on to speak to their peers about the risks and realities of hepatitis C. Maggie McCabe

Young people participating in CPix met professional body artists and worked with visual artists and hep C educators to develop their visual communication skills and their knowledge of hepatitis C. The photo essays from this project were created by the young people to be part of a travelling exhibition which was launched in Hepatitis Awareness Week, 2010.

C Pix was a title given to this project about hepatitis C and digital photography, the letter being a reference to the virus, and pix suggesting pixel, but also a common term for needles amongst people who inject drugs.

Single letters and sharp, fragmented images derived from digital snapshots have been collaged, stained, torn, cut and painted to create a corollary of memory and event. These photo essays are works of art that form a cultural interpretation of a serious health issue that is seldom talked about.

For the first prize the judges chose this beautiful artwork, for they thought that the work had a “simple yet striking image that made you stop and think about the various objects and their relationship to hepatitis C. It is a very contemporary, eye-catching design.”

Rituals involving blood and piercing, tattooing and intoxification are as ancient as this virus itself. However in

This participant’s ability to capture the aspects of hepatitis C in an artistic manner as well as depict this topic from an innovative and personal perspective is entitled ‘Open Locked Doors to be Free as a Bird’. Jasmine participated with the Riverland Headspace Young Mums group.

First Prize: Jasmine Barker

Hepatitis C Community News June 2010 •

Pioneers Honoured Leaders in the fight against the spread of blood-borne viruses

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lex Wodak and Ingrid van Beek have both been appointed Members of the Order of Australia (AM) in the 2010 Queen’s Birthday Honours list.

Alex Wodak was the director of drug and alcohol services at St Vincent’s Hospital, in Sydney during the early 1980s, at the terrifying start of the AIDS epidemic. Having tried numerous

times to get the government to sanction a needle-exchange service, and having been refused, he started one without permission. ‘’I knew it was illegal but I also knew the law was wrong and the only way to change that law was through civil disobedience. I could see a cataclysmic epidemic taking place and I just had to do it,” he told the Sydney Morning Herald. ‘’My colleagues thought I had taken leave of my senses. I knew I was taking a hell of a risk - for myself, my family and my [medical] registration, but I was certain I was right. I just didn’t realise at the time how right I was.’’

Cross injecting centre, in Sydney, which opened in 2001. “I am very honoured to be awarded the Medal of Australia—it is wonderful that my work at the sharp, and often controversial, end of the drug and alcohol field has been recognised in this way,” she said.

Dr van Beek detailed her experiences at the injecting centre, which she left in 2008, in her book, In the Eye of the Needle: Diary of a Medically Supervised Injecting Centre. A copy of this fascinating book is available from the Hepatitis C Council of SA’s library, at our offices at 3 Hackney Rd, Hackney.

Alex Wodak also helped establish the National Drug and Alcohol Research Centre, the Australian Society of HIV Medicine, and the nation’s first medically supervised injecting centre.

Ingrid van Beek was honoured, in part, for her work at the Kings

ABOVE: Nick Mourtzakis’s Archibald-nominated portrait of Alex Wodak RIGHT: Ingrid van Beek’s diary from her Kings Cross days

WHO Endorses Viral Hepatitis Resolution

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he World Health Organisation’s Viral Hepatitis Resolution— discussed in the last issue— was adopted by the 63rd World Health Assembly on Friday, 21 May 2010 in Geneva.

World Hepatitis Day will now be on 28 July from 2011, in recognition of the birthday of Professor Baruch Blumberg, who first discovered the hepatitis B virus. The WHO endorses this day to provide an opportunity for education and greater understanding of Hepatitis C Community News • June 2010

viral hepatitis as a global health problem, and to stimulate the strengthening of preventive and control measures amongst its member countries.

This has been a major initiative of the World Hepatitis Alliance

over the last three years.

Community organisations and clinicians across the globe have been involved in garnering the support of governments who had to unanimously support the resolution for it to be passed, and Charles Gore, the President of the World Hepatitis Alliance, had the opportunity to address the Assembly.

The World Health Organisation will now develop a global strategy for hepatitis prevention and control.

New Country, New Food Celebrating with the Bhutanese community

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he New Country New Food Project, a partnership project between the Hepatitis C Council of SA and the Migrant Resource Centre of SA, involved a series of workshops and excursions for 12 volunteers from the Bhutanese community to learn about food in their new country.

These 12 volunteers will now go on to use what they have learnt to offer very practical support to newly arriving families from

The program for the day was extensive, and highlights included two volunteers sharing their stories about their journeys out of Bhutan, through refugee camps, and then arriving in Adelaide. Both women acknowledged that one of the biggest issues when coming to a new country is managing food issues for their families.

Photo Š Peter Casier

A digital photo-story was also shown, which demonstrated the huge differences in living environments between the refugee camps and suburban Adelaide.

Bhutan.

Over the course of the New Country New Food Project, participants shared their knowledge and experiences with food in their new country and discussed healthy diet with Gauri Gajmere, the New Country New Food project officer. They received information about liver health and viral hepatitis from HCCSA educator Mahdi Nor, found out about where ingredients they use in their cooking could be sourced locally with excursions to food markets, and had demonstrations on how to use cooking equipment available in Australia.

Cooking in a refugee camp (above), as opposed to an Adelaide feast (below)

Other highlights included presentations of Bhutanese cultural song and dance, the presentation of awards to the 12 volunteers, and, of course, a fabulous southern Bhutanese lunch. The volunteers had prepared some 25 different varieties of traditional food items from ingredients available in Adelaide to demonstrate that the food the Bhutanese community consumed is healthy and that it was possible to continue this trend even in a new country.

The audience also participated in reading out short messages about chronic viral hepatitis throughout the event.

To mark National Hepatitis Awareness Week, and to acknowledge the achievements of the 12 volunteer participants, a community celebration was held on Saturday, 22 May 2010 for around 65 people.

Hepatitis C Community News June 2010 •

Hepatitis Awareness Week An introduction Hepatitis Awareness Week in Adelaide was launched on Wednesday, 19 May with an amazing exhibition of artwork from the C-Pix project (see page 1 for more details).

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elcome to the opening of the C-Pix Exhibition to mark the South Australian Launch of National Hepatitis Awareness Week, and indeed World Hepatitis Day today.

I just have a few introductory words about youth, risk and hep C to set the context for the exhibition today.

Youth and risky behaviour are well-known companions. It is the period in our lives when we most feel bullet proof; when we are most curious about new experiences, most ready to test the boundaries, and most influenced by our peers and the need to find our tribe.

However, as we all must learn at some stage, there is a downside to the thrills of risk-taking with our tribe, and this is certainly the case with injecting drug use, backyard tattooing and unsterile bodypiercing, which are part of the risk landscape for many young people today. The exchange of blood in all these practices can result in hepatitis C infection, especially when sharing injecting equipment,

Hepatitis C Community News • June 2010

which accounts for 90% of new infections in this country.

Hepatitis C can then have serious health outcomes many years later.

It is now the leading cause for liver transplants in Australia, and without a substantial increase in the numbers of people accessing treatment, this will continue to be the case for many years to come.

With an estimated 10,000 new infections each year in Australia, there is still a huge challenge in preventing hepatitis C. Access to education and the means of prevention—clean needles and equipment—is critical to hep C prevention, particularly amongst young people.

This time last year, on World Hepatitis Day, the first SA Hepatitis C Action Plan was released, and over the past 12 months additional initiatives have been funded to address both the increasing burden of disease as well as hep C prevention in South Australia.

This includes nine new treatment

nurse positions over three years to increase access to treatment, as well as the trial of syringe vending machines to increase access to prevention. These are very welcome initiatives at each end of the spectrum of the response to hepatitis C in SA. The C-Pix project, which culminates in this exhibition today, aimed to fill some of the hep C knowledge gap for four groups of young people in South Australia, by providing a safe creative space for them to learn new skills and knowledge, and explore risk practices in relation to hep C, using the medium of photo essays.

With the assistance of community artists, a tattooist and a body artist, HCCSA educators and peer educators worked with young people from the Riverland Headspace, Bowden Brompton Community School, Magill Training Centre and Streetlink to create this vibrant exhibition, which shows different views of hep C through the prism of youth culture.

Kerry Paterson (Adapted from a speech delivered on World Hepatitis Day)

Awareness Week: The Launch The Minister for Health on hepatitis

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am pleased to join you for the launch of World Hepatitis Day and to open the exhibition of the C-Pix project. I want to thank the Hepatitis C Council of South Australia for the important work they do to raise awareness of hepatitis C in the South Australian community, including coordinating this annual event. And also thanks to Streetlink Youth Health Service for hosting today’s event and providing the space for the C-Pix exhibition, and to the young people who participated in C-Pix - from the Magill Training Centre, Streetlink, Berri Headspace and Bowden Brompton Community School—you should be very proud of your artwork!

This exhibition is a great example of art and health uniting to convey an important health message in a creative and engaging way. Art makes messages more palatable, easier to digest and more memorable. The photo essays in this exhibition present their messages in a dynamic way.

They are thought-provoking, educational and pack a punch!

of South Australia’s efforts to educate the community about hepatitis C—including projects like the C-Pix exhibition—are valuable in dispelling myths and misinformation.

I would like to give you a brief update on the progress of the South Australian Hepatitis C Action Plan 2009-2012, which was launched on last year’s World Hepatitis Day. I understand that, a year into its implementation, good progress is being made towards achieving the objectives in the Plan.

Consultant positions to expand treatment services in hospitals and in primary and community health settings across the state.

A newly established committee is developing a state-wide model of care for hepatitis C that will provide the best possible care for people with hepatitis C. Tertiary clinicians will work together with GPs and nurses to support people receiving treatment. (continued on page 12)

One of its aims is to strengthen primary care by improving access to hepatitis C testing and treatment services for all those with hepatitis C, across South Australia.

I am pleased to let you know that SA Health is funding new Clinical Nurse

I am sure all those who view the exhibition will remember the messages about hepatitis C risk factors.

We know from Hepatitis Australia’s survey that a significant number of South Australians are confused about hepatitis C transmission. Many of those surveyed mistakenly believe hepatitis C can be transmitted by saliva or unprotected sex. In reality, around 80% of hepatitis C infections in Australia can be attributed to injecting drug use. The Hepatitis C Council Hepatitis C Community News June 2010 •

Undercover Treatment Walter’s story

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here are lots of ways to conclude a driving holiday across America.

Flying home quietly with swags of duty free, a Monica Lewinsky t-shirt and a good novel is one way. Being ordered to strip down to your underwear (designer label, thank god) and walk six times through a security gate that emits a blood curdling shriek each time you pass through, is another.

It was the late 1990s, the era of the Unabomber. He’d announced that LA airport would be blown up the day of my departure, so security was amped up. It was a mystery to me why, practically naked, I continued setting off the metal detectors. I pleaded with the militia that they could do whatever tests

they liked just so long as I could get dressed. Finally they let me onto my flight.

Some months later, still thinking I had nothing more than a good travel story, I came across an article about hemochromatosis (see page 8) and how in extreme cases it can even be picked up by security checks at airports. A few tests later—and a misdiagnosis or two—I tested positive. For over a decade, my liver ached. I’d have sharp pains; what I called needles under the rib cage. I’d known I had hepatitis C since 1992 but hemochromatosis was another whammy.

In 1999 I was put on a blind trial, and drew the shortest of short straws: the maximum dose of raw Interferon three times a week. The side-effects were

hideous. I sweated and shook so much I had to move into the spare room, and I believe the experience contributed to the eventual breakdown of my marriage. On top of everything else, the trial was cancelled after seven weeks. And I lost a heap of good hair in the process.

Although I’d come to terms with having hep C, a rusted liver and stage two cirrhosis, I made the decision to have treatment because I realised I didn’t want any ‘what ifs?’ at the end of my life. But I wasn’t super-positive. Deep down, I didn’t really trust treatment to work. I had a ‘Plan A and Plan B’: ‘If I do it and clear, I’ll go on a world trip. If I do it and don’t clear, then I’ll go on a world trip!’

Photo © cskk (www.flickr.com/photos/cskk/)

Hepatitis C Community News • June 2010

I also had the sense that I had gotten myself into this mess, so, I was going to have to try to get myself out. It wasn’t that I wanted to punish the younger me but I did in some ways see doing treatment as my payback for years of fun and frivolous entertainment.

I started combination treatment in 2007, with the attitude that it wasn’t going to get the better of me. I approached treatment the second time as a challenge, and all the negative stories of dropout rates and side-effects were not going to stop me.

Fortunately, I was treated at my local hospital, which has outstanding primary care and support staff. I may even have fallen in love with several of the nurses.

I hardly told anyone I was on treatment. I discussed it confidentially with a colleague at my work, and she covered for me on the days that I sat in my office staring at a computer screen, or slept under my desk George Costanza style.

I structured my life so that I would have my shot on Friday nights, and I’d cocoon myself for the weekend when the sides were the worst. I worked full-time during the whole 48 weeks and did not take a single day off.

I had one friend that had done treatment, and she was my rock. I’d call her and talk about symptoms, side-effects and life. We laughed a lot and shared much humour, often at our own expense. Otherwise, I didn’t disclose to anyone else apart from my ex-wife and a few people in my hep C support group. (Oddly, my ex who couldn’t live with me

unwell was there for every one of those 48 weeks!)

doesn’t invite the same kind of judgment as hep C.

Of course, other friends knew something was wrong when I started dramatically dropping weight – I wanted to change my name to ‘Gaunt’. A few friends came over in some form of ‘intervention’ and one tentatively approached me, rather sheepishly, to ask if everything was alright. They had huddled together and decided I had cancer and was hiding it. Their kindness was genuine and touching, but I kept up the lie and said there was something, but that I didn’t want to talk about it.

There were a few things in particular that kept me going.

One is my dog. Sick or not sick, every day, morning and night, I had to walk her. There would be days we’d be out and I’d be so slow and tired, I’d feel like some sad old man shuffling along with his dog. The benefits of having a pet while on treatment are enormous.

If there was one single thing which sustained me, it was my companion kelpie.

I didn’t want sympathy. I didn’t want people gingerly stepping around me and asking, ‘How are you?’ all the time. Also, if I had disclosed, I’d then have to tell people later, whether it worked or not; and then the big stigma issue of how, why, where and when did you get hep C? It was easier to limit it to a few people. Funnily enough, this was a bit like my drug experimentation: something I went off and did secretly, something that only a very few people knew about. There’s a certain perverse enjoyment in secretiveness.

Conversely, I’ve been quite open with the hemochromatosis—I would tell people about that without any hesitation, often when explaining why I didn’t drink alcohol. However, I’ve been burned a few times with disclosing hep C. It doesn’t seem to matter if your drug use and infection was half your lifetime ago and you no longer do the things you did then. Hemochromatosis

Another important element is books and music. I deliberately fostered my interests into obsessions, such as reading everything by a particular author, or buying the collected works of the Grateful Dead.

Their music would transport me from whatever negative mind state I might have been in; and their bass player, Phil Lesh, is also a big hep C advocate. I dropped in to his website fairly often during treatment. Lesh has created a wonderful space in which I found a community to share, read, laugh and participate in (www.philzone. com/hep_c-board.html).

Following structured daily routines also soothed me, and made me more able to tackle the few really bad days.

Routines gave me focus, made me feel like I was in control.

I became good at finding milestones. 48 weeks sure can go slow on pegylated Interferon. I’d mark off time: 47 garbage collection days, 46 weekly TV guides, a football season, a birthday. Each day marked off my calendar was (continued over page) Hepatitis C Community News June 2010 •

Undercover Treatment Continued from page 7

a victory. Blood tests and results are another important milestone. Each PCR or liver function test, each pick up from Pharmacy—they all became motivators and helped count down the clock.

In other areas, I loosened up. I smoked a bit of pot most nights and that helped me relax, kept my appetite up and helped me sleep. And it made a lot of bad TV seem entertaining. I’ve always had a very healthy diet, but on treatment I ate whatever I could, whenever I could. One night I had my first McDonalds in about 20 years. I thought a Big Mac was at least better than not eating anything; although in retrospect that may not be true.

It was disgusting.

The hardest weeks were 3042. It seemed such a long stretch and I was really over it by then. I didn’t take any anti-depressants, but at times I wished for something that could quash my rollercoaster mood swings. I’d snap at just about anything. Things were broken, inanimate objects given names of body parts and functions. The dog would hide and the neighbours recoil as I literally attacked the washing line, wrestled with garden implements or cursed the god of liver disease.

My lowest point on treatment lasted about three days, and happened just over half-way through. It was New Year’s Eve and I was too tired to go out to celebrate. I remember thinking bleakly, ‘What has become of me? I’m mid 40s, single, it’s fucking New Year’s Eve and I’m alone’. I couldn’t see any light at all. I managed to get it together to call some friends I Hepatitis C Community News • June 2010

knew would be having a quiet one for very different reasons, they told me to come over, and we watched dud DVDs for the night.

through treatment, and others who can offer you support and companionship, not just sympathy and anxiety; and you need to have a laugh.

Forty-eight weeks eventually passed, by the end I looked like an extra in a prisoner of war movie. I wouldn’t say I had a post-treatment epiphany or anything like that. There was an element of depression afterwards. In almost every respect the last decade had been built on the premise that I was sick, that I had a disease and that this was my lot in life.

Finishing treatment led me to confront a bunch of issues that I’d conveniently masked with hep C. We can allow our illness to define us just as others might define us by our illness.

I’ve done a lot of things that some might say are courageous or risky. I’ve hitched and driven across America, travelled through the Middle-East and had a pretty full and interesting life, but nothing has given me a sense of accomplishment like completing 48 weeks of combination treatment. No-one could do it for me. It was up to me to work out how to find a way through. Completing treatment and clearing hep C are two of my proudest achievements.

I now walk down the street looking at people and think I really don’t know what is going on in their lives. Behind the scenes they could be dealing with all sorts of terrible stuff.

I’m far more tolerant and less quick to judge these days.

Having said that I did see someone recently wearing a t shirt that said The liver is evil – it must be punished. I wanted to punch that guy and say, ‘Listen here you f-wit, how dare you make light of liver disease!’

At the support group, the outrageously entertaining cast of characters included some not yet on treatment.

My advice to them was this: don’t immerse yourself in the negative or dwell on the sideeffects. Impotency, hair loss and impersonating Travis Bickell in Taxi Driver are all manageable, and mostly temporary. Get yourself a support system that includes those who have been

Walter, 45, has worked in the music industry, and in media and communications in the health sector. He completed 48 weeks of combination therapy and achieved a SVR in November 2008. Walter continues to be treated for hemochromatosis. Next year he will be implementing “Plan A”.

Hemochromatosis is the abnormal and excessive absorption of iron from food in which the excess iron is retained and deposited in various joints and organs throughout the body, in particular, the liver.

Excerpted from Treatment, Life, Hep C & Me, available to download from http://www. hepatitisaustralia.com/events_ projects/HepatitisCtreatmentst oriesbook.html

High Five New national health strategies

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he Hepatitis C Council of SA applauds the endorsement by Australian health ministers from the Commonwealth and all states and territories, of five new national strategies for bloodborne viruses (BBVs) and sexually transmissible infections (STIs) at the Australian Health Minister’s Conference in April 2010.

A momentous step forward in Australia’s treatment and prevention of BBVs and STIs, the suite of five strategies aims to reduce the transmission of STIs and BBVs, and the considerable and heart-breaking morbidity, mortality and personal and social implications they have.

Significantly, the strategies are a result of a successful collaborative effort, with major contributions from community stakeholders, research organisations, medical professionals and state and territory health departments.

The five strategies which will guide policies in relation to the prevention, testing and treatment of BBVs and STIs for the next three years are: • The Third National Hepatitis C Virus (HCV) Strategy; • The First National Hepatitis B Strategy; • The Sixth National HIV Strategy; • The Second National Sexually Transmissible Infections Strategy; and • The Third National Aboriginal and Torres Strait Islander Blood Borne Viruses and Sexually Transmissible Infections Strategy.

Levinia Crooks, CEO of the Australasian Society for HIV Medicine (ASHM), was thrilled by the endorsement.

“I am very proud to have been part of this process, which I think heralds an invigorated shared interest and responsibility in relation to BBVs and STIs. To have endorsement of this nature gives us a firm platform from which to

continue our work. Now comes the challenge of putting it all into practice,” said Ms Crooks.

“ASHM’s role and focus in this will be to work with health care professionals, governments and community agencies to facilitate education, prevention and research in the BBV and STI area. It is hugely important that we work together as these conditions are preventable and we can learn from our previous experiences.”

and manage established chronic infection.

As Ms Crooks notes, “There is widespread confusion between the different types of viral hepatitis: A, B and C in particular. We need to ensure everyone, not just medical and health sector workers, has good access to accurate, nonjudgmental information and high quality health services.”

HCCSA joins ASHM and Hepatitis Australia in calling on all levels of government to ensure the immediate implementation of the third National Hepatitis C strategy, and of Australia’s first-ever National Hepatitis B strategy.

“The endorsement of these strategies is certainly a cause for celebration during National Hepatitis Week. However there is significant groundwork needed to support their successful implementation,” noted Ms Crooks.

“The partnership approach is vital in the success of the roll out of all these strategies in 2010 to 2013—collaboration between the communities most affected by the viruses and all levels of government, communitybased organisations, and the medical health-care research and scientific communities at local, state, territory and national levels.”

Approximately 165,000 people are living with chronic hepatitis B, a disease which is preventable via vaccination, which adds to the estimated 212,000 Australians who have chronic hepatitis C (with an estimated 10,000 new infections occurring annually).

Hepatitis B and C are major public health issues, with hepatitis C one of the most commonly reported notified diseases in Australia. The priorities are and will remain the need to prevent new infection

The five strategies are outlined at www. health.gov.au/internet/ main/publishing.nsf/ Content/ohp-nationalstrategies-2010.

Hepatitis C Community News June 2010 •

Treatment (continued from last issue) A discussion about hep C, treatment, and dealing with side-effects

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ecently, several people at the Council who have undergone treatment for hepatitis C agreed to sit down and discuss their stories. It was a fascinating conversation, and we’re printing the highlights here, so that readers can learn more about some individual experiences of treatment.

Because of the amount and depth of material covered, this article was split into two parts. You can read the first half in the last issue, or see it online at www.hepccouncilsa. asn.au/magazine/191-issue-47march-2010.

Will, Jay and Mary have all recently finished their hepatitis C treatment.

partner and my son—though it felt like a lot, sometimes it seemed as though I’d given them no really useful information at all. But that was OK too. The concept of your family being your entire support, putting all of your eggs into one basket, is ridiculous to me. I could get some support from my partner, but I had a whole lot of other adults I could turn to.

WILL: I’m detached from my family—I have a son and an exwife in WA, and my son is in his thirties. My ex-wife would say, ‘Only people who have hepatitis and drink have problems, so why are you still drinking?’ I explained that I didn’t drink, and so she said, ‘Well, you shouldn’t have any problems, should you?’

I ONLY ASKED HOW YOU WERE FEELING!

FAMILY DISCLOSURE & SUPPORT

But I had set up a good support structure in the outside world, so I was able to minimise the amount I talked about it at home, which helped maintain those relationships.

I gave some information to my Hepatitis C Community News 10 • June 2010

Cartoon © James Morrison

JAY: My family had good information, even my 16-year-old son, and they were as supportive as they could be. There were two specific periods when I was pretty cranky, so he and my partner just avoided me or ignored me. With our family, we show a whole range of our feelings, and my son would look at me, wondering what was going on. He couldn’t quite understand the relationship between my being on treatment and my behaviour. After all, young people tend to be a bit more preoccupied with themselves and their own lives. My partner was really supportive, but it was clear that he was also pretty sick of it as well—sick of having to look after and always think about someone who has a chronic health condition.

My son disowned me as a nut.

He said he had heaps of friends who had hepatitis and it didn’t affect them. He said I was a drama queen. He was no support, just cut me off and wouldn’t talk to me. And though I sent information to them, my ex-wife told me he just ripped it up and binned it. And I had concerns for him, because I knew he’d been using intravenously.

My ex-wife failed to read the information too; she just filed it away. And in that first stage, I was sure I was dying, which is a very common reaction. And I had friends—a married couple—who said that they would support me no matter what happened. And they did, for seven or eight weeks, and then they just disappeared out of my life totally. I had the same experience with other friends. They just didn’t want to be there. People just seemed to drop off.

But then I found immense support in the church group I was in, but I felt the need to be pretty cautious at first, but they were great. It’s quite a large group, and people would be helpful but also give you a bit of space. But even there, people would know you had a medical problem, and that you were going for treatment, and they’d be amazed that you weren’t all well again after 12 weeks. Even when you drip-feed the information to people, they just often have no idea.

When I gave people information in person, I often found, they just viewed it as my opinion. But when people ring the phoneline, where I volunteer, and I give them the exact same information, they view it as being much more authoritative. That’s just human nature, I suppose.

MARY: I actually chose not to tell my daughter, who was 12 at the time, and I wondered if that was the right or wrong thing. I know she definitely copped a lot of my bad moods. Though she did end up with a new bedroom, because I used to go shopping a lot at Ikea to try to distract myself. But I chose not to tell her because I was sensitive to the idea that she might tell her friends, who might tell their parents, and it would become common knowledge. I just didn’t want that. Gossiping between parents was something I was going to avoid.

But I look forward to her being older, and being able to talk to her about it all. And hopefully there will be good things now to balance it out—I’ll have more energy and be more fun now that I’ve finished treatment.

I didn’t tell my own mother, either, because she’s a loudmouth. My partner copped the worst of it. He just got yelled at. But he was very supportive. He’d take the laundry to the Laundromat, dry everything, and at the time that just seemed huge. I just couldn’t manage things like that, sometimes.

FORMAL SUPPORT GROUPS WILL: This might just be my perception, but if you look for formal support groups out there, outside the Council there just really isn’t anything. It’s ridiculous.

I did some research for myself and for the Phoneline, and found there were some services that offered help, but the conditions required to get it were all wrong for hepatitis C. You had to be totally incapacitated for 18 months or two years, or never have the chance of getting better.

The best I found was some local councils, who would offer cleaning help or whatever for 10 or 12 weeks, but that only gets you to the point in a 24- or 48-week treatment when you’re at your worst, and then leaves you in the lurch.

Different community groups—the Greek community or the Italian community, say—often have systems set up to provide meals to members of that community.

And Meals on Wheels will sustain you if you get that, but it’s often like eating cardboard and drinking muddy water.

So that leaves the Council’s ‘Calming the C’ group, which is only once per fortnight. There’s nothing else out there the way there is if you have cancer or something like that. Down the track, if the Council got a lot more funding, it might be possible.

JAY: For the past 14 years I’ve been part of a peer counselling and social change movement, and that’s where I took my feelings. At the end of the day I could ring or have a face-to-face session with someone. I could take my feelings to that place to release, rather than have them leaking out into the rest of my life, and that was really pretty crucial to me and my management of treatment.

In a small town like Adelaide, visiting specific support groups and services just wasn’t right for me, though it’s very different for some other people.

When people do know you’re on treatment, you learn to expect people to attribute everything you say or do, or how you look, to your treatment. I might have had a shorter temper than normal, but I wasn’t a puppet being controlled by the drugs. I was still in charge of myself.

(continued over page) Hepatitis C Community News June 2010 • 11

Treatment

Awareness Week Launch

Continued from page 11

Continued from page 5

MARY: The Hep C Council Information and Support Line and Calming the C was vital for me—not having to worry about disclosure here makes a big difference. Knowing that you don’t have to hide anything makes a big difference to the stress. And visiting Mosaic, I had some really good relaxation sessions, which made a huge difference.

And, importantly, people with hepatitis C and the Hepatitis C Council of SA will be represented on the committee to ensure that all stakeholders contribute to the new model.

FINAL WORDS OF ADVICE

Finally, I want to recognise the Hepatitis C Council of SA’s strong record of working in partnership with young people, to raise awareness of behaviours that can increase the risk of being infected with hepatitis C. The Council uses innovative approaches to engage with young people and this year is no exception. The CPix project has been a fantastic opportunity for young people to learn new skills in art and photography and learn the facts about hepatitis C.

MARY: You have to avoid social isolation. I’m glad I could get out of the house each day. It would have been a disaster just to sit at home feeling sick all day, every day. And you have to eat really well, so don’t be slack with your breakfast!

WILL: My advice for someone on treatment would be to set up that support network before you start.

JAY: Have a clear picture about the options open to you. And if you don’t have some ongoing activity that you enjoy, start one—have some ‘you time’ to focus on and get you through, something outside the treatment experience.

Hepatitis C Community News 12 • June 2010

I notice, too, that I haven’t yet been approached by that giant liver who always seems to be hanging around at these things. I must say, I’m rather disappointed!

I hope that your participation in this project helps you to stay healthy and to share the facts about hepatitis C with friends and family.

Thanks to the staff, volunteers and members of the Hepatitis C Council of SA and Streetlink Youth Health Service, for inviting me to be part of the World Hepatitis Day in this annual National Hepatitis Awareness Week. I want to particularly acknowledge the work of the planning committee.

Thanks also to the young artists who participated in the C-Pix project: your artworks are striking and your message is powerfully expressed. This exhibition is a great example of art and health coming together to bring greater awareness of hepatitis in a creative medium.

Hon. John Hill, Minister for Health (Adapted from a speech delivered on World Hepatitis Day)

(L-R): Project co-ordinator Maggie McCabe, artist and designer Emma Kate Codrington, Minister for Health John Hill and artist Craig Dadsey

Profile: Eric Gowans What hepatitis research is happening in Adelaide?

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rofessor Eric Gowans is the Executive Director of the Adelaide-based Women’s and Children’s Health Research Institute, having joined them in January 2009. His major research area is hepatitis C. The Women’s and Children’s Health Research Institute (WCHRI) is independent of corporate or hospital control. Founded in 1989, it is committed to understanding the basic mechanisms involved in health and disease, and now has more than 70 staff and students involved in research on immunology, gastrointestinal development and disease, wound healing and child nutrition, with the control of growth, development and tissue repair in infants and children as an overall research theme.

Professor Gowans also works in Melbourne with the Prince Alfred Hospital, and is in charge of research projects in both cities.

Broadly speaking, the Melbourne research is concerned with hepatitis C treatment, while the Adelaide research makes use of immunology and virology to get

an insight into designing a future vaccine for the hepatitis C virus.

The current Melbourne research project, which is funded by the NHMRC, is a trial of a medication intended to boost immune response to HCV. Planned to start in August with fifteen patients, and to run until the end of 2011, the trial follows a one-month course of interferon (to knock down the viral load) with a novel medication which could result in treatment being a 3-week process, rather than a 24- or 48-week obstacle course.

Gowans was previously based in Brisbane, where a promising trial regarding the effects of large doses of vitamin B on HCV viral load had to be put aside because of lack of research money. This is one of the unfortunate—but all-too-common— aspects of medical science: small trials which cannot be pursued due to lack of funding.

The trial looks at each patient in turn, to monitor and consider any side-effects in one participant before giving the treatment to the next.

In Adelaide, the prophylactic vaccine-related research is pursued by a five-person team of Ph.D. students and postdoctoral researchers. They will be examining the library of chemical compounds owned by a large medical and biotechnology company for anti-HCV elements, and using immunology and virology to look at what would be promising candidates for a hepatitis C vaccine.

Photo © Alex Sims Hepatitis C Community News June 2010 • 13

Survey Participant Requests Do you have Chronic Hepatitis B or C? Your chance to win $100 cash!

Hepatitis C diagnosis?

Help with research.

Australian residents are invited to take part in a James Cook University research study exploring the influence of factors such as received information and care, illness perceptions, and stigma, on the healthrelated quality of life of people with chronic hepatitis B (CHBV) or chronic hepatitis C (CHCV). Prerequisites for participation are that you are at least 18 years of age, and have been diagnosed with either CHBV or CHCV, but are not co-infected with both and/or with HIV.

Researchers at Bond University and QLD Health would like to study effective psychological treatment combinations for people who have been diagnosed with Hepatitis C.

As a reward for completing the questionnaire, you will have the chance to win a cash prize of AU$100 (instructions provided with the questionnaire). The draw is expected to take place in September 2010 and the winner will be notified shortly after.

Go here to submit or read more about the survey: http://www.surveymonkey.com/s/hepresearch To have a hard-copy version of this survey mailed to you, please email Yvonne.Drazic@jcu.edu.au.

Volunteers are required to participate in a study in which they would be required to complete a series of short self-report questionnaires. If you are over 18 years of age, English is your first language, and you have been diagnosed with Hepatitis C, you will be suitable to participate in this research.

Go here to submit or read more about the survey: https://www. surveymonkey.com/s/5XPSGB5

Research Update How HCV undermines the immune system

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new study by Stanley M. Lemon, of the Center for Translational Immunology (Inflammatory Diseases Institute) at the University of North Carolina, has neatly demonstrated how hepatitis C not only attacks the body, but produces its own defence system to prevent the body from destroying the virus.

Persistent hepatitis C virus infection is associated with progressive hepatic fibrosis and liver cancer. Acute infection evokes several distinct innate immune responses, but these are partially or completely countered by the virus.

Hepatitis C proteins serve dual functions in replication and immune evasion, acting to disrupt the cellular signalling pathways which would allow the body to produce its own interferon (one of the most important chemicals involved in hepatitis C treatment).

The hepatitis C proteins also subvert Jak-STAT signalling. This is the process which transmits Hepatitis C Community News 14 • June 2010

information from chemical signals outside the cell, through the cell membrane, and into gene promoters on the DNA in the cell nucleus, which causes DNA transcription and activity in the cell.

In turn, this results in a set of genes, known as the interferonstimulated genes (ISGs), being blocked or reduced in activity.

It is these genes which normally produce hundreds of different antiviral proteins when triggered by interferon in the body.

The overall effect of the hepatitis C virus is a multilayered evasion of innate immunity, which massively reduces the subsequent development of antigen-specific adaptive immunity, thereby contributing to virus persistence and resistance to therapy.

This all goes to show how HCV infection evokes a number of innate immune responses, many of which are partially or completely countered by the virus itself. The hepatitis C virus has become very

effective at living successfully within its human host—likely as a result of having been in the human disease pool for thousands of years.

You can read more from the study in the May 10, 2010 issue of the Journal of Biological Chemistry, or see the article in full online at www.jbc.org/ content/early/2010/05/10/jbc.

R109.099556.full.pdf+html.

Food, Glorious Food!

Love Your Liver Lunches

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mong the activities undertaken by the Hepatitis C Council before and during Awareness Week were the popular Love Your Liver Lunches.

Held in a number of venues, these lunches offered free liver-friendly meals for the general public.

Community Food SA, on Cromwell Road in Kilburn, were kind enough to host us for three days during Awareness Week, and we were able to give away dozens of free lunches and some useful hepatitis information at the same time.

We were also able to sponsor discounts on ‘Easy Feast’ packs for cooking liver-friendly food at home. The Easy Feast scheme offers “all in one” healthy meal packs which contains all the ingredients and recipes to cook a healthy meal for a family of 46. These healthy meal packs, put together by the Central Eastern Community Foodies, are delicious, nutritious and easy to prepare (see more at communityfoodsa.org.au/ files/easy feast website.pdf).

Serving up at Community Foods… ..and at the Vietnamese Community Centre.

Special thanks go to Caitlin Dowell, who cooked up vast amounts of food each day like a professional chef.

O’liver & Co. Children helping the fight for liver health

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s we have done for the last several years, the Hepatitis C Council ran a colouring competition for children for Awareness Week, through dozens of local public libraries. This year there were a range of different pictures to be coloured (each demonstrating an aspect of liver health), as well as an opportunity for budding young artists to draw their own image of our mascot, O’liver, doing something healthy.

though, we managed it, and the best works of art were put together to create a new child- and familyfriendly hepatitis resource, Meet O’liver, which will be available

from numerous libraries and from the Council. See it now at www. k3myliver.org.au/more.html, and see some of the other entrants at our website, hepccouncilsa.asn.au.

The response was gratifyingly huge, and we had real trouble trying to narrow down the entrants to just six winners. In the end, Hepatitis C Community News June 2010 • 15

Are you happy with your GP? If you are, we need to hear from you.*

Individual Membership will continue from year to year without the need for renewal, as long as contact details provided remain current. You are able to resign your membership at any time. To update contact details for continuing membership or to resign your membership, please phone HCCSA Administration on 8362 8443.

We are updating our Hep C-friendly GP list for metro and rural areas.

Please call Deborah on 1300 437 222. *We approach GPs for permission before putting their names on our list, and we do not reveal who nominated them.

Hepatitis C Community News 16 • June 2010

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 1300 437 222 (for the cost of a local call anywhere in SA).

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) 8218 0700

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 24hour information, referral and support.

Freecall: 1800 621 780

SA Sex Industry Network (SA-SIN)

Promotes the health, rights and wellbeing of sex workers.

(08) 8334 1666

Vietnamese Community in Australia (SA Chapter)

Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program.

(08) 8447 8821

The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443.

Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities.

(08) 8362 0395

AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/ homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community.

(08) 8334 1611

Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services.

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