#51 Hep C Community News

Take Control of Jack’s Life!

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Hepatitis

Community News #51 • April 2011

The story of Jack’s experiences discovering he had hepatitis C and learning more about the virus have run in the Hepatitis C Community News since late 2008. Now we’re handing over control of the story to YOU. Email or write to us with suggestions of what you’d like to see happen next. Should Jack go on treatment? Take up martial arts? Become a masked avenger? Let us know! If your suggestion is used, you will win a $100 shopping voucher.

Send your ideas, with your contact details, to james@hepccouncilsa.asn.au, or to The Editor at PO Box 782, Kent Town, SA 5071.

If two or more people send in the same great idea, the first to have done so will be the winner—so act fast!

Hepatitis C Community News March 2011 • 15

Hepatitis in SA

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Blood-Borne Virus Education

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Multicultural Liver Clinic

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SA Health has contributed funds towards this program.

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New Resource from HCCSA

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

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter

The pamphlet makes use of the dynamic and colourful artwork created by young people as part of the C-Pix project: see Hepatitis C Community News issue 48 (June 2010) for more information.

If you’d like a copy—or lots of copies—please contact the Council or visit our website.

Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette Coordinator of Education Programs: John McKiernan

For more about healthy body art, see the interview with Steve Parker on p12.

About the Cover

Educator: Mahdi Nor Educator: Nicole Taylor

Peer Education Coordinator: Maggie McCabe

Mark

Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Dayna Gauri Kat Phil Philip Yvonne

Info and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims

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Multicultural Liver Clinic

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Sowing Seeds of Affinity

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World Hepatitis Day Plans

Nunkuwarrin Yunti

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Dave’s Story

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Treatment & Anaemia Research

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From Little Things…

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Body Art, Health and the Law

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

Catherine Ferguson Carol Holly Justine Price

MOSAIC & P.E.A.C.E.

Letter to the Editor

Contents

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Publications Officer: James Morrison

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.

For support and information about hep C, or for referrals, call the Council’s Telephone Info and Support Service for information on 1300 437 222 (for the cost of a local call anywhere in Australia).

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

Peer Educator Mentor: Fred Robertson

Hepatitis C Council of SA

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

Cover by James Morrison, using photomicrographs of hepatic livers

by Jeremy Hetzel (www.flickr.com/photos/jthetzel) and Ed Uthman (www.flickr.com/photos/euthman)

Rural Educator: Michelle Spudic

Peer Educators: Anya Karan Megan Philip

The Hepatitis C Council of SA is introducing a new resource for hepatitis C education. Called Body Art and Hepatitis C, it’s written to educate anyone considering a tattoo or bodypiercing, to give them the information they need to be safe and avoid hepatitis infection.

Useful Contacts & Community Links

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.

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) 8351 9031

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.

We welcome contributions from Council members and the general public.

Are we there yet?

Cover Pages - Issue 51 - March 22 2

31/03/2011 8:56:09 AM

Letter to the Editor Taking the treatment plunge!

Are you still undecided about treatment?

It is now 12 months since I finished my interferon/ribavirin treatment for hepatitis C. Because I am a telephone volunteer at the Hepatitis C Council of SA, I get to talk to lots of you about the fears and trepidations of embarking upon the treatment commitment, so I would like to share a few words with you. I do not want to just bang on about how sick I have been. I want to tell you something else.

I acquired hepatitis C way back in the 1970s, when I was young and experimental, and knew nothing of its existence for about 25 years. Sure, I knew that I didn’t always feel well. Headaches and horrid hangovers had become a way of life, and I never seemed as happy as other people, but none of this was taken seriously by doctors, and nobody wanted to listen to my sorry story.

I soldiered on, becoming more unwell, tired and depressed as the years ticked by, until I had to admit something was wrong.

I had lost all my zest for life, I couldn’t drink alcohol much anymore, I had weird allergies, and I wasn’t very social at all because of it. I just couldn’t be bothered, and I don’t think I was much fun to be around.

Something had to give: I didn’t want to live like this anymore, and I certainly wasn’t looking

forward to becoming old and sick. The time had come for me to take some true responsibility and try to change what was happening to my life.

I had been diagnosed with hepatitis C, but that didn’t actually mean much to me. I was ignorant about the possibility that hepatitis C could be responsible for the way things were really headed. After all, things hadn’t changed overnight. I only knew what I knew, and slowly but surely I had become accustomed to being unwell. But as I said, things had to change, and I started to consider treatment.

I spent a lot of time preparing for treatment. I spoke to my specialist, I read all of the information provided to me, and I spoke to a few people about their experiences.

I had a plan. I confided in a couple of close friends, asking for their help and support if required, and realised that I was headed for a difficult and challenging year—six months of treatment and six months of recovery.

As I said earlier, I am not going to bang on about how sick I was, but believe me, I was. Not everyone becomes that ill, but some people do, and as far as I am aware, there is just no way to predict who will and who won’t. But at the end of the day, I reckon that if you are prepared

for the hard road, and it turns out not to be that bad, then you are winning.

Now for what I want to say—and it is with heartfelt hesitation, because I really respect those that are not successful—I tell you that I was successful, and I feel better than I have felt for longer than I can remember. I am not as depressed, which is a completely new and very welcome state, and there is more energy inside my body. I feel fabulous! Well, most of the time, anyway!

So if you are feeling crap, fedup and confused, believe me: 18 months ago I never thought I would ever be able to say “It was so worth it!”

Debee

WIN!

From now on, the best letter printed in each issue of the Hepatitis C Community News will receive a $25 shopping voucher.

Write to us about anything to do with the magazine, the Council, living with hepatitis C, or living well ideas.

This issue the prize goes to Debee for her reflections on treatment.

Email the editor at james@hepccouncilsa.asn.au Hepatitis C Community News April 2011 • Internal Pages - Issue 51 - Marc1 1

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The Multicultural Liver Clinic A new program in Adelaide for people from around the world

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uch has been written in the last two years about viral hepatitis—especially hepatitis B—and its impact on the culturally and linguistically diverse (CALD) population. The vast majority of the available publications urge us to respond to the ever-growing concerns about the future possible burden of hepatitis B-related advanced liver disease on the health care system.

Over the last 10 years, PEACE Multicultural Services, a program of Relationships Australia SA, has supported a number of people living with hepatitis C and/or B who come from diverse migrant backgrounds. Our first-hand experience with clients

living with viral hepatitis has brought to our attention the seriousness of the gaps that currently exist in the health care system, especially when taking into consideration the difficult process of settling in a new country.

Since early 2009, PEACE—in collaboration with the Hepatitis C Council of SA, Migrant Health Services, specialist medical staff (nurses and GPs) and SA Health—have developed a pilot project which aims to establish a community-based Multicultural Liver Clinic.

The soon-to-be opened clinic will provide affected clients an opportunity to connect with hospital nurses in a safe and friendly environment through community workers

from the PEACE program. It aims to provide clients with immediate: • access to appropriate information and support, • access to testing and screening, and • access or links to a liver specialist within one of the major hospitals.

The clinic (when it opens in mid-2011) also aims to provide clients with followup support through shared care case management and community education.

Rosemary Abdallah For further information about the Multicultural Liver clinic and/or PEACE Multicultural services, contact Relationships Australia (SA) on (08) 8245 8100.

Dr Jill Benson explains the clinical background to the clinic

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multicultural liver clinic will begin operation in 2011 on Fridays from 5.30-7.30pm.

The clinic will be held at the Migrant Health Service at 21 Market St Adelaide. It will be staffed by viral hepatitis nurses, bilingual workers from PEACE Multicultural Services of Relationships Australia SA, and GPs.

for improving access to detection, early intervention and education about viral hepatitis, immunisation, diagnosis and treatment options for people from highrisk countries who are now living in Australia. There will be liaising with local GPs about case management, referrals to hospital, as well as immunisation services.

Patients can self-refer or can be sent by their GP to the clinic. Interpreters will be used for all patients with low English proficiency.

The aim is to pilot a culturally appropriate model

Hepatitis B and C are more common in those Australians who come from CALD backgrounds, with up to 20% having hepatitis B and 4% having hepatitis C. Many will have difficulty understanding

their illness without a qualified interpreter, have little social support and need more detailed explanations about the health implications of viral hepatitis than other Australians. This includes the importance of follow-up and of early detection and possible treatment.

The high risk of hepatitis B in people from CALD background is predominantly because of mother-to-child (vertical) transmission around the time of birth.

90% of these patients will not clear vertically transmitted hepatitis B,

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whereas only 10% will not clear horizontally transmitted hepatitis B (hepatitis B infection from exposure as a child or adult). Up to 25% of those with chronic hepatitis B will develop cirrhosis or hepatocellular carcinoma many years after contracting the virus. There is also an increased risk of hepatitis C and of horizontally transmitted hepatitis B in people from resource-poor countries because of the re-use of needles and other medical equipment.

Patients with hepatitis B and hepatitis C are usually asymptomatic and so the diagnosis is made by screening for hepatitis B surface antigen and hepatitis C antibodies in those who are thought to be at higher risk. This will include those who have been born in a high-prevalence country, those who have ever used intravenous drugs, those who have been in prison or those who are household or sexual contacts.

There is now treatment available for people with both hepatitis B and hepatitis C. Blood tests such as hepatitis C PCR and genotype and hepatitis B ‘envelope’ antigen and viral load will guide clinicians about the need for treatment.

Those with hepatitis C virus can access treatment after assessment by a viral hepatitis clinic. Those with hepatitis B need to be followed up until the appropriate time for treatment. This is usually done by the patient’s GP or by the viral hepatitis clinic at the local public hospital. Treatment needs to be co-ordinated by the viral hepatitis clinic but GPs are encouraged to be part of a shared care arrangement so that the patient receives optimum care.

For many people who have come to Australia from resource-poor countries, the only blood-borne virus they are aware of is HIV. Culturally appropriate information with the use

of a qualified interpreter is important so that people can fully understand the ramifications of having the blood test, a positive diagnosis, the reason for follow-up, immunisation of household contacts and the possibility of treatment. The shame for the person and the stigma from their specific community and from society in general needs to be addressed and discussed in a sensitive manner.

For more information about the Multicultural Liver Clinic please contact Dr Jill Benson at jill.benson@health.sa.gov.au.

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Sowing Seeds of Affinity Creating as therapy and education

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n 2006, a group of women got together to build a community where women with lived prison experience could have a sense of belonging. Now known as Seeds of Affinity, they were inspired to work together to do something simple and positive, learn new skills and challenge on-going stigmatisation.

“We started by making soaps which we could take home for our own use and share with family and friends,” said group facilitator Anna Kemp. “I’ve had a long-term interest in creating programs that provide individuals with opportunities to experience success.”

issues. There were few simple, positive activities that helped women achieve small successes.

“It has been important for the women who have attended not to perceive their involvement as something that they ‘must do’ or as a structured therapeutic environment with an expectation of overcoming significant long-term problems on completion.

“Seeds of Affinity doesn’t expect people to ‘address’ any behaviour. It simply enables women to do something that feels good. By providing the

experience of small successes through tasks that are really achievable, we are able to build self-esteem and confidence, and remind women that life can be different.

“Women work best when they are with other women and feel supported and not judged.

They don’t feel silly because they are among peers, so they can talk about issues if they feel like it.”

The soap-making went so well that the group decided to go a step further and sell them to the community so that they could

Anna Kemp being presented with her award

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Soap-making photo CC Lisa Salamida www.flickr.com/photos/savor_soaps/2982650564

“Having worked in the criminal justice system for over 30 years I have found very few structured community programs that meet the needs of women returning back into the community.

Programs are often offencefocused or address specific

fund some of their activities. The women now put together toiletry sets which include soap, which organisations can buy as gifts for speakers, conference give-aways or door prizes. Prime Minister Julia Gillard received Seeds of Affinity toiletries as part of her thank-you gift after a recent lecture she gave in Adelaide for the Don Dunstan Foundation.

Women don’t have to physically attend the group to be a part of it. “One of our women has to stay home to care for an elderly person. It’s hard for her to get to group, but she puts together the gift packs at home,” said Anna. “That provides her with a break and a different focus when things at home get too much.”

In 2009, they started a veggie patch at the Brompton Bowden Community Garden which provided fresh vegetables for their weekly shared lunches.

They’d also had a “jam day” where they made preserves using excess apricots from Anna’s home garden.

Anna said that by being a part of a group, the women learn inclusive behaviour and to work as a team.

Soap-making photo CC Lisa Salamida www.flickr.com/photos/savor_soaps/2982650564

The group provides a starter toiletry pack to every woman entering prison. “It helps for them to know they’re not alone in their experience,” Anna explained.

To date, Seeds of Affinity has supported over 100 women in their adjustment from prison back to the community. Some move on after a few weeks, others stay for years; there are two members from the original 2006 group who now act as mentors for new members, providing inspiring role models.

In 2010, the women’s work was recognised when Anna, whose work with the group is unpaid, received the SA Government’s South Australia Works Adult Educator of the Year award. “It was a bit of a shock for me, but the women were thrilled,” said Anna. “It was a wonderful acknowledgement for the women in that what we have

been doing is viewed as education.”

Anna said the women were also very grateful to all those organisations which had supported them over the years.

“Initially, Centacare supported us by paying the rent and the food while I paid for the ingredients for the soap,” she said. “Later, Rotary, Adelaide Brighton Cement, Community Benefits SA, Housing SA, WISE Employment in Victoria and Relationships Australia all supported us in one way or another. Currently, the Brompton Bowden Community Centre doesn’t charge us rent for use of their space.”

If you would like to find out more about the Seeds of Affinity gift packs, or if you would like to order some, please call Bowden Brompton Community Centre on 8340 3013.

Cecilia Lim

There have been many success stories.

“There’s a lady who paints rocks. Although she no longer comes to the group, whenever we have a stall at community events, like Sorry Day and Naidoc Week, she provides us with painted rocks for sale,” said Anna.

“Another woman who is very skilled at embroidery provides embroidery lessons at her home to one of our members.”

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World Hepatitis Day Plans Getting ready for the big day and the big week

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ith only four months to go until World Hepatitis Day on July 28, the World Hepatitis Alliance has been working at full speed to prepare for the big day and ensure that this year’s is the most successful to date.

Last month, the World Hepatitis Alliance board sat down with the World Health Organisation (WHO)’s communications department to develop a broad message for this year’s campaign, which falls under the ‘This is hepatitis...’ platform.

While we wait to receive WHO’s final approval on it, we can confirm that once the main message is approved, WHO will produce a poster which will be shared with their regional and country offices, together with a toolkit explaining how their country offices should engage with governments and the various country’s general populations to mark and promote World Hepatitis Day. These posters will be available for everyone to use, and, in addition, the Alliance will create

a range of designs based on this message which individual hepatitis organisations like the Hepatitis C Council of SA will be able to customise for more specific messaging in our own campaigns. The designs are likely to be for posters, postcards, web banner ads, T-shirts, stickers and mugs, although this is still to be confirmed.

The Alliance are currently building a tool on their website (worldhepatitisalliance.org) that will make it really easy for everyone to customise and

create their own posters and campaign materials. Given that, with hepatitis, we are dealing with several different viruses and that the hepatitis situation differs from country to country, the idea is that each nation’s councils can create locally relevant messages while still staying true to the global World Hepatitis Day movement.

The Hepatitis C Council of SA will release more information about our own local strategy as World Hepatitis Day and Hepatitis Awareness Week (24–30 July) draw closer.

Hep C Positive Speaker Training HCCSA is offering accredited training to those people in the community who are affected by hepatitis C and would like to gain skills in public speaking in a program called C Talk. We will be offering the training in the second half of this year.

Positive speakers are members of the community who are affected by hepatitis C. They are currently living with the virus, have recently cleared the virus, or are currently undergoing treatment. Positive speakers share their personal stories to other people affected, to those at risk, or with workers who come into contact with the affected community.

Register your interest now by calling John on 8362 8443 or email john@hepccouncilsa.asn.au.

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Light morning tea will be provided.

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Dave’s Story Hepatitis C and workplace discrimination

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y journey through the battles of treatment for hepatitis C would have been easier if my employer didn’t discriminate against me. But this is not where my journey started, it started during my heroin addiction.

For eight years I was a heroin addict and I thought giving it up, and not touching drugs again, would be the end of it. I had to be clean for seven years, and build myself a new life.

I thought telling my employers’ HR manger would be the right thing to do. I had time-off when I was first diagnosed and also told him I would need time when I didn’t feel the best on treatment. When leaving his office, I thought I had his support. I met him to keep him updated about how I was going and when I would be starting treatment. I even gave him information on treatment and side effects.

I started treatment in mid May 2008. Side effects caught up with me pretty quickly. I had a week off when I started treatment.

This was planned and I had a doctor’s certificate for it.

My first day back to work I was placed into a much harder and more physically demanding position. I asked to be placed back in my old position but was told I couldn’t do this as no other jobs were available and this crew needed my help.

After only 36 hours I broke down because the physical demands caught up with me.

I informed my supervisor I was going home. It took me a week to recover from this.

When I went back to work with the doctor’s certificate for time off, and asking for lighter duties, I was asked to see my employer-appointed doctor to get a clearance. I did and she agreed with my doctor that if I were placed in a lighter-duties role I would be alright.

I felt I could return to work.

But again they had placed me in a more physically demanding role. I told them this was going against doctor’s orders but my supervisor told me that it was what he had been told to do by higher management.

I did this role for two days so that I had time to find out the facts and learn my rights. On both days I told my supervisor this was going against doctor’s orders and I asked for higher management to call me. If this was a small business I could have understood but I worked for the local council.

All I was asking for was the job I had before going on to treatment—something that I know I could manage to do and was good at.

So after getting advice from my local Hepatitis Council, I went to see my

Side-effects on treatment hit me hard. I had bad headaches, lethargy, lightsensitivity, brain fog—just to name a few. But at the time

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Image CC Cedric Fermanti

But after partying too hard over the Australia Day holiday 2008 with way too much drinking, I just couldn’t get better. So after three days I went to the doctors and a few test later the doctor had some bad news—I had hepatitis C. I was lucky I saw that doctor as he was just filling in for 3 months. He knew about treatment and talked me through it. This made my choice to go fullsteam ahead and get onto treatment a lot easier.

How wrong I was. This was a decision that I came to regret. Now, looking back, this decision is something I would suggest people think long and hard about before doing. I thought I was doing the right thing but they used it against me. It’s enough to still haunt me.

union delegate and I bought it to his attention. For the next 2 weeks I went to work only to be sent home every day. This was heartbreaking—to turn up to work only to be sent home, when I could see duties and a role I could perform but that they wouldn’t allow me to do.

It was so hard to come home to tell my wife what they were doing to me and try to be strong. But really I was at

my wit’s ends and all I did on the drive home was cry so she didn’t see it.

I just couldn’t understand how this could happen to me: I was a good worker before starting treatment.

What had changed? Why where they doing this to me? I knew the aim of my employer was to make me break so I would do something stupid or just quit. The mind-games they play were a low act.

It was so bad that they had even disclosed my hepatitis status to other people. My supervisor and the new HR manager thought it was their duty to tell people that someone they worked with had hep C. It wouldn’t be hard to work out that it was me and it would have been better if they at least told people some facts and didn’t put them into a panic - which it did.

This is something they spoke to me about and I said in no way did I want this to

Image CC Cedric Fermanti (continued over page) Hepatitis C Community Newspage) (continued over April 2011 • Internal Pages - Issue 51 - Marc9 9

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Dave’s Story (from previous page)

happen. I even told them that they weren’t allowed to even do this. I also learnt that my supervisor had shown my medical records to my workmates.

The mind-games crushed all my spirit and will-power and to this day I still have a hard time dealing with it and it holds me back from returning to work. This is when enough was enough—I couldn’t let them do this to me. I took my case to the anti-discrimination commission, as this was taking a massive toll on my mental state and my marriage.

Treatment is hard enough on relationships as it is, but, with the stress that work was doing to me, my marriage was getting damaged.

By the time it got to conciliation I was ready to take them on, and not even my union would back me anymore—don’t ask me why.

But I had done my research and knew my facts. I couldn’t see family or friends anymore because it made me hate everything and everyone. I was in such a rage, I needed to seek counselling. From the time I woke up until I fell asleep all I did was try and make sense of it. I had letters from everyone: from doctors and my Hepatitis Council. I downloaded and photocopied everything. I was going fight them on their ground and that is what I did.

I had a good diary but I didn’t start it from day dot— my case would have been a

lot stronger if I had. Damn that hindsight—it would be beautiful if we could use it.

Discrimination is not a black and white thing; there are a lot of grey areas and loopholes for the employers to use. My employer tried most of them. I put in an offer to them for a settlement and they agreed and I took it. I needed to do this as I saw no future with that employer. I played hard-ball with a team of ‘know-it-alls’ and won. It might have only been a 1point win, but a win is a win when you’re playing hardball.

I would have liked to have taken it further but I would have lost everything— everything I worked so hard to build up from a person who only seven years earlier had taken everything for granted. To take a case to court for discrimination takes money, lawyers, and time, all of which I didn’t have. It’s just something I couldn’t risk.

All I wanted back was my happiness.

Most people ask me why I didn’t go on Centrelink sickness benefits earlier.

Well, the truth is that I thought every day that I was going back to work, so by the time I did go on to benefits even Centrelink felt sorry for me! And how’s this for a change? They couldn’t have been more helpful.

But that isn’t all the help I need. My bank has helped with my home loan, and I have withdrawn a part of my

superannuation to help me get by.

So, 53 needles later—and over 2152 tablets—I finish treatment and six months of waiting. I won! I got my SVR (which means I cleared the virus) and I keep my sanity.

Treatment taught me so much, including some things I could have done without.

But I reached my goal, my wife and our relationship is now stronger, and now I value the small things in life even more.

I have some more things to work out health-wise, but one day at a time is my philosophy now. I’d like to thank the people who helped me through my treatment, like my beautiful wife, who went through it every day with me.

If you get anything out of my story, please think before disclosing your hepatitis status. Please take my warnings. Be careful of disclosing hep C to anyone, because people can be ignorant and misinformed and just don’t know the facts. Please use the supports available to you.

And most of all, remember to smile, because that’s what makes the world go around.

Dave Reprinted from The Hep Factor, with permission from the Hepatitis Council of Queensland

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Research on Treatment and Anaemia Genetic variation aiding hepatitis C treatment Photo of HCV virus by Charles Rice

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cientists have pinpointed two gene variants that protect hepatitis C patients from the anaemia that can be caused by antiviral treatment.

The findings are detailed in two studies in the February 2011 issue of the journal Hepatology.

The ability to identify patients with the two variants in the inosine triphosphatase (ITPA) gene will help ensure that antiviral therapy is completed and the hepatitis C virus is eliminated, the researchers say.

“Currently, only the use of the drug erythropoietin (EPO)—an expensive drug that due to its high cost cannot be reimbursed in several countries—might prevent unsuccessful antiviral treatment in these cases,” explained Dr. Mangia.

“Our findings demonstrated that ITPA variants are strongly associated with protection from week four anaemia and help us in selecting in advance who will need early ribavirin dose

of RBV need to be used in the early phases of treatment.”

A related study by Japanese scientists found similar results in 61 patients with HCV. In this series of experiments led

by Fumitaka Suzuki, M.D., from Toranomon Hospital in Japan, patients received a triple therapy of pegINF, RBV and the protease inhibitor, telaprevir.

In one study, Italian researchers looked at 238 HCV patients treated with the antiviral drugs and found that the two ITPA variants were strongly associated with protection from anaemia.

Alessandra Mangia, M.D., from Casa Sollievo della Sofferenza Hospital in Italy, and colleagues evaluated the association between ITPA variants and anaemia in a cohort of 238 Caucasian patients treated with variable pegylated interferon (pegIFN) and weight-based doses of ribavirin (RBV). The research team found that the ITPA variants were strongly and independently associated with protection from anaemia, but did not provide an increase in sustained virological response.

“When anaemia develops only four weeks after the start of treatment, physicians are required to immediately reduce ribavirin dosages. This early reduction will affect the overall duration of treatment which, with the combination of pegIFN and RBV, lasts 24 weeks for patients infected with HCV genotypes 2 and 3 and 48 weeks for patients with HCV genotype 1 infection.

reduction and possibly supportive EPO treatment.

“This may lead to a more rational use of economical resources and to an individualized use of supportive EPO treatment,” concluded Dr. Mangia.

“Patients with a genetic profile that included the two ITPA variants may be safely administered higher doses of RBV, increasing the likelihood of HCV elimination after treatment—an important finding given that to achieve viral clearance high dosages

Dr. Suzuki and colleagues found that ITPA variants impacted blood levels; however a sustained virological response could be achieved with careful monitoring of anaemia and prompt adjustment of RBV dose. The authors suggest that future investigation of the influence of ITPA gene variants on RBV-induced anaemia are needed on larger scales and on patients of various ethnicities.

Hepatitis C Community News April 2011 • 11

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From Little Things…

Starting young with healthy body art education

T

he creative efforts of a small team at Southern Primary Health Noarlunga (SPHN) and the City of Onkaparinga (COO) have led to two significant initiatives relating to body art and tattooing in SA. The first was the Healthy Body Art program—an ongoing education program in the southern suburbs to raise the awareness amongst primary school students about the risks associated with body-piercing The second was a project to develop strategies for educating and training South Australian body piercers and tattooists in infection control.

The achievement of the Healthy Body Art program was recognised when SPHN’s Community Safety Consultant, Steve Parker—one of the key drivers of the program—was given the Health Minister’s Innovation Award late last year. This was part of the SA Health Awards, designed to recognise and reward individuals, teams, programs

Steve Parker

or projects working within the SA public health sector.

Steve stressed that the project would not have been possible without the contribution of the COO’s Environmental Health Officer Nicole Moore.

He said the need for such a program emerged after a number of stories surfaced about infection and injury resulting from unhygienic body art practices.

“Body art is the fastest growing form of body decoration and is widely

practised among young people many of whom are unaware of the health risks associated with unhygienic body art practices and poor knowledge of aftercare,” he said.

“Given the evidence that they will readily engage in unsafe piercing practices, it is crucial that young people are well informed about the importance of safe, hygienic and professional body piercing practices.”

Nicole said it was important to talk to young people

Nicole Moore Hepatitis C Community News 12 • April 2011 Internal Pages - Issue 51 - Marc12 12

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Nicole teaching primary school students about healthy body art before they get piercings and before they go to high school, where they might start acquiring piercings as part of their identity.

The Healthy Body Art program was developed in response to a major survey in the area which showed that in a 12-month period, 96% of GPs had treated young people for infections or injuries following a body piercing. In that same period, more than 1,500 people were treated for body-piercing infections or injuries.

Briefly, the survey report recommendations were: 1. ensure that those who provide skin penetration procedures are trained in best practice and have access to education and training in infection control and first aid, 2. work with the body piercing industry to ensure the provision of appropriate written after-

care advice, 3. develop educational resources and programs to enable young people to make informed and healthy choices in body piercing, and 4. improve the knowledge and skills of counsellors and teachers in regard to health risks associated with body piercing, such as infection and bloodborne viruses like HIV, hepatitis B and hepatitis C. Steve and Nicole piloted the Healthy Body Art program with staff, students and parents at Reynella East Primary School.

Incorporating often quite specific feedback from the students, the interactive program is delivered by the City’s Environmental Health Officers. It does not condone body piercing but neither does it judge the choices that young people make.

It engages the students in

talking with their teachers and parents about the health issues involved with piercing.

The program is offered to all primary schools within the City of Onkaparinga area and, to date, some 1100 students have participated in it with great success and very positive feedback.

In response to the survey report’s first recommendation, an Infection Control Education and Training for Body Piercers and Tattooists project was introduced.

This targeted education project involved representatives from the body art industry working closely with agencies that included SA Health’s Applied Environmental Health Branch, the City of Onkaparinga, SPHN, SafeWork SA and the Hepatitis C Council of (continued over page) Hepatitis C Community News April 2011 • 13

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From Little Things… (from previous page)

SA. An infection control education and training program for body-piercers and tattooists throughout the state was developed and delivered at various sites.

This included a specialised component on blood-borne virus transmission. A total of 70 tattooists and 50 body piercers from metropolitan and rural SA attended the four-hour workshops.

The strong industry support for these workshops demonstrates that the piercing and tattooing industries in SA are extremely supportive of initiatives to ensure that providers of skin penetration procedures have access to quality education and training in workplace infection control and safe work practices.

Feedback from employers and employees showed a raised awareness of health and safety issues in tattoo studios and piercing salons, leading to genuine change in the approach to workplace

The correct way to do a piercing, using sterile equipment

infection control and safety.

Cecilia Lim

A video about the Healthy Body Art project can be viewed on HCCSA’s YouTube Channel. Go to http://bit.ly/hccsa-bodyart.

C Health Inspiration HCCSA is planning its second series of six-week workshops for people living with hepatitis C, starting in May 2011.

Want to learn more about managing hepatitis C symptoms, the impact of appropriate diet and exercise regimes, or how to manage stress effectively? Or you may be even considering or wanting to learn more about treatment options.

Register your interest now by calling John on 8362 8443, or email john@hepccouncilsa.asn.au.

Hepatitis C Community News 14 • April 2011 Internal Pages - Issue 51 - Marc14 14

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Photo © Aerokev (www.flickr.com/photos/aerokev/)

On Body Art, Health and the Law HCCSA’s official response to proposed laws on body art in SA To the Attorney-General’s Department Thank you for the opportunity to comment on the Draft Summary Offences (Tattooing, Body Piercing and Body Modification) Amendment Bill 2011 in relation to the regulation of the tattooing and body piercing industry in South Australia.

One of the important services of the Hepatitis C Council of SA (HCCSA) is to educate young people about the prevention of hepatitis C, so as to avoid adding to the more than 17,000 South Australians who, it is estimated, have already been exposed to this blood-borne virus.

In 2009, HCCSA educators also worked in partnership with Southern Primary Health, Noarlunga, SA Department of Health, SafeworkSA and the SA tattooing and bodypiercing industry to develop and deliver the training package Infection Control Education and Training for Body Piercers and Tattooists in South Australia for both industry members and environmental health officers.

An integral part of HCCSA’s education role is to promote a safe environment to prevent the further transmission of hepatitis C in South Australia. HCCSA believes that body piercings are currently very fashionable amongst a significant proportion of young people, including those under 18 years of age, and we are very concerned that this Bill is creating an environment which would discourage some minors from adopting the safe behaviour of attending a bodypiercing salon with professionals trained in infection control to get a piercing, by making it illegal to have certain very common nonintimate body piercings without the consent of a guardian.

While HCCSA would encourage all young people to discuss the decision to have a body piercing with their parents or guardians, we recognise that adolescence is a time when parental advice is often challenged, particularly when it conflicts with peer influence.

It is our concern that, where a parent or guardian does not support a body piercing, a young person may seek one out anyway amongst their friends and acquaintances, or undergo a ‘backyard’ piercing, and therefore put themselves at risk of a blood-borne virus infection through poor infection-control practices. While parents may be not be happy that their child had gone ahead and got a body piercing against their wishes, or without their knowledge, HCCSA believes that this would pale into insignificance compared to the concern they would feel if their child’s health had been put at risk in the process.

Also of concern also are those young people who will not be able to gain parental or guardian’s consent because they are estranged from their families, and who will thus be denied the opportunity to access safe and hygienic procedures because of these family circumstances.

These young people are amongst the most vulnerable in our community, and will be further disadvantaged by this legislation.

In the foreword to the Bill, the Attorney-General states that it is important to ‘strike a balance between protecting young people from harm and recognising the autonomy and individuality’ of young people. HCCSA believes that a graduated system of ages related to decision-making about body piercings and tattoos strikes a

more appropriate balance to achieve this aim, with 18 being an appropriate age for making decisions about tattoos and intimate body piercings, and 16 being an appropriate age for making decisions about nonintimate body piercings, without the need for a guardian’s consent. Lip piercing has not been mentioned in this Bill.

HCCSA believes lip piercings are also common amongst young people, and believe these piercings should be treated similarly to other non-intimate piercings such as nose, navel, eyebrow, etc.

HCCSA also has concerns that the proposed police powers in the Bill, which enable the police to access client records or question clients they consider to be minors, may encourage some people (not only young people) to provide false information which would then be of considerable consequence if there was a serious breach of infection control which needed to be followed up by SA Health.

In relation to hepatitis C and this Bill to regulate the tattoo and body piercing industry in South Australia, HCCSA fears that the balance is weighted to law enforcement rather than to public health, and that this will result in an increase in hepatitis C infections amongst young people in this state, at great cost to both the individuals concerned and their families, as well as the South Australian community.

Yours sincerely Kerry Paterson Executive Officer HCCSA See more about the proposed law changes at http://tiny.cc/ bodyartbill.

Hepatitis C Community News April 2011 • 15

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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 • April 2011 Internal Pages - Issue 51 - Marc16 16

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New Resource from HCCSA

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

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter

The pamphlet makes use of the dynamic and colourful artwork created by young people as part of the C-Pix project: see Hepatitis C Community News issue 48 (June 2010) for more information.

If you’d like a copy—or lots of copies—please contact the Council or visit our website.

Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette Coordinator of Education Programs: John McKiernan

For more about healthy body art, see the interview with Steve Parker on p12.

About the Cover

Educator: Mahdi Nor Educator: Nicole Taylor

Peer Education Coordinator: Maggie McCabe

Mark

Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Dayna Gauri Kat Phil Philip Yvonne

Info and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims

2

Multicultural Liver Clinic

4

Sowing Seeds of Affinity

6

World Hepatitis Day Plans

Nunkuwarrin Yunti

8

Dave’s Story

11

Treatment & Anaemia Research

12

From Little Things…

15

Body Art, Health and the Law

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

Catherine Ferguson Carol Holly Justine Price

MOSAIC & P.E.A.C.E.

Letter to the Editor

Contents

Mark

Publications Officer: James Morrison

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.

For support and information about hep C, or for referrals, call the Council’s Telephone Info and Support Service for information on 1300 437 222 (for the cost of a local call anywhere in Australia).

1

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

Peer Educator Mentor: Fred Robertson

Hepatitis C Council of SA

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

Cover by James Morrison, using photomicrographs of hepatic livers

by Jeremy Hetzel (www.flickr.com/photos/jthetzel) and Ed Uthman (www.flickr.com/photos/euthman)

Rural Educator: Michelle Spudic

Peer Educators: Anya Karan Megan Philip

The Hepatitis C Council of SA is introducing a new resource for hepatitis C education. Called Body Art and Hepatitis C, it’s written to educate anyone considering a tattoo or bodypiercing, to give them the information they need to be safe and avoid hepatitis infection.

Useful Contacts & Community Links

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.

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) 8351 9031

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.

We welcome contributions from Council members and the general public.

Are we there yet?

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Take Control of Jack’s Life!

C

Hepatitis

Community News #51 • April 2011

The story of Jack’s experiences discovering he had hepatitis C and learning more about the virus have run in the Hepatitis C Community News since late 2008. Now we’re handing over control of the story to YOU. Email or write to us with suggestions of what you’d like to see happen next. Should Jack go on treatment? Take up martial arts? Become a masked avenger? Let us know! If your suggestion is used, you will win a $100 shopping voucher.

Send your ideas, with your contact details, to james@hepccouncilsa.asn.au, or to The Editor at PO Box 782, Kent Town, SA 5071.

If two or more people send in the same great idea, the first to have done so will be the winner—so act fast!

Hepatitis C Community News March 2011 • 15

Hepatitis in SA

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Blood-Borne Virus Education

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Multicultural Liver Clinic

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SA Health has contributed funds towards this program.

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