#52 Hep C Community News

Hepatitis

C

Community News #52 • June 2011

TREATMENT OPTIONS New Medications Delayed • The Treatment Journey

WIN!

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

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

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

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Info and Support Line Coordinator: Deborah Warneke-Arnold

AWARENESS WEEK IS COMING!

24-30 July!

Well done this time to Hamish!

Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette

See page 4 for more info, and visit our website for updates!

Education Coordinator: John McKiernan

About the Cover

Educators: Mahdi Nor Nicole Taylor Michelle Spudic (Rural)

Cover created and photographed by James Morrison

Peer Education Coordinator: Maggie McCabe

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 Peer Educators: Anya Karan Philip Penny

Mark Will

Megan

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

Contents 1

Letter to the Editor

2

Delays for New Hepatitis Treatment

4

Awareness Week 2011 Plans

Librarian: Joy Sims

5

James Nash House Stories

BOARD

6

Hepatitis C in Country SA

8

From Burundi to Adelaide

10

Frank’s Story

12

The Treatment Journey

15

Tucking In: Food & Education

Publications Officer: James Morrison Info and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim

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

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.

And then my face exploded.

Letter to the Editor Looking back at 50 issues and insulin resistance Dear Editor, I just wanted to write a short note to let you know how much I enjoy the magazine, the Hepatitis C Community News. I look forward to each edition, and particularly like reading the personal stories from people living with hepatitis C, as well as the factual and medical articles about the virus and treatments.

Your December edition, ‘50 Issues: A Retrospective’, was a bit of an eye-opener as to how long the Hepatitis C Council of SA has been issuing this great magazine, and I must admit that I think I have read all of them. The pictures of all of the covers from past issues, on the back

page, was a real trip down memory lane.

The article (also from that issue) ‘Insulin Resistance and Treatment’ was really a confirmation of what I have long suspected: that people with hep C are more prone to insulin resistance, and that it also has a bearing on how well one responds to interferon treatment.

So I have to thank you for covering this subject so well.

I find it very encouraging to learn that insulin resistance can be managed with a proper diet, exercise and weight loss. Well done! This could potentially help a lot of people to prepare a little better for tackling treatment by managing their insulin

resistance beforehand, and therefore raising the odds for a successful outcome on treatment.

If there is anything else I would like to see in the Hepatitis C Community News, it would be to read more positive treatment stories. I know that some people do it tough on treatment, but I have also met many people who say that it wasn’t so bad, and that clearing the virus from their bodies has changed their lives. Maybe I will try it myself soon.

Again, thanks so much for keeping so many of us informed and up to date.

Cheers, Hamish

Email the editor at james@hepccouncilsa.asn.au C Health Inspiration Hep C Positive Speaker Training HCCSA is planning its second series of six-week workshops for people living with hepatitis C, starting after July/August 011.

Want to learn more about managing hepatitis C symptoms, 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 836 8443 or email john@hepccouncilsa.asn.au.

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 011 depending on numbers, so get in fast.

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

Register your interest now by calling John on 836 8443 or email john@hepccouncilsa.asn.au.

Hepatitis C Community News June 011 • 1

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Window signs image uses photo CC Michael Hartford www.flickr.com/photos/mhartford/122996187/

The waiting time grows for new treatments‌

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Delays for New Hepatitis Treatment Window signs image uses photo CC Michael Hartford www.flickr.com/photos/mhartford/122996187/

Federal Government blocks PBS funding

P

eople living with hepatitis C and looking to new treatments like telaprevir and boceprevir (see the special feature on both these medications in our next issue) are set to have a significant wait under current federal government plans.

The Gillard Labor government has announced that, until the Federal Budget is forced back into surplus, it will restrict the number of new medicines subsidised by taxpayers under the Pharmaceutical Benefits Scheme (PBS).

“The Government has ignored the advice of its own expert committee, which recommended that the new medicines and vaccines be made available to patients through the PBS,” announced a joint press release from the Consumer Health Forum and Medicines Australia.

“Health consumers, clinicians and the companies who have developed these medicines are owed a proper explanation. This decision puts the price of some medicines and vaccines beyond the reach of many sick and vulnerable consumers.”

The Consumer Health Forum of Australia (www.chf.org. au) is a peak organisation representing the interests of Australian healthcare consumers. They were also concerned that the Pharmaceutical Benefits

Advisory Committee (PBAC), which recommends new medicines and vaccines for listing on the PBS, had been allowed to suggest that the PBS be allowed to list some new drugs, but not others.

“For Cabinet to be choosing to list some medicines on the PBS and not others raises the question of what expertise and experience they have that enables them to make decisions that contradict the advice of their own expert committee of clinicians and health economists,” the CHF stated.

“Unless Cabinet reverts to the usual practice of accepting the PBAC’s recommendations and only requiring its approval for medicines costing $10 million or more in one year, more and more medicines will be held up in Cabinet, leaving more and more consumers without access to medicines that the PBAC has determined should be publicly available.”

One issue of great concern here is that the government is deferring medicines which they say will not save lives, or which are intended to replace existing treatments.

But telaprevir and boceprevir have been shown to shorten hepatitis C treatment duration, and to have greater efficacy than the current treatments, at least for those with genotype 1 hepatitis C. The Hepatitis C Council of

SA knows of a number of anecdotal reports suggesting that people with genotype 1 are already holding off on treatment because they had a reasonable expectation that new and better medication would be available very soon (see the telaprevir article in issue 49 of this magazine, online at http://tinyurl.com/ hccsa-telaprevir).

Any delays in making these drugs available will damage the investment SA Health (and the health departments of other states and the federal government) has made in infrastructure to increase the uptake of treatment, which is vital in tackling impact the growing burden of hepatitis C disease at the state and national levels.

Alarmed by the government’s stance, the CHF organised a meeting with Nicola Roxon, the federal Minister for Health and Ageing, at the end of April. Unfortunately, the CHF and its allies were unable to sway the government.

“This decision was made due to the difficult fiscal circumstances currently facing the government, “Minister Roxon said after the meeting. “The decision followed extensive discussion within Cabinet and was one that we did not take lightly.”

(continued on [page 16) Hepatitis C Community News June 011 • 3

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Hepatitis Awareness Week 2011 Join us from 24–30 July National Hepatitis Awareness Week this year will be in late July, during the week around World Hepatitis Day (28 July). The national theme for the week will be Love Your Liver, with an accompanying logo to be launched by Hepatitis Australia. Activities being planned for South Australia include: Small Grants The Hepatitis C Council SA is offering small grants of up to $ 50 to support awareness week activities by community groups. Activities may include Love Your Liver Lunches, hepatitis education workshops, video screenings, quiz afternoons, etc. HCCSA educators and peer educators are available to facilitate education activities or provide information during your activity. If your organisation

has ideas for activities during Hepatitis Awareness Week, please call us on 8362 8443.

Community Walkabouts As part of awareness-raising in the wider community, we will be taking O’liver for walks down shopping malls as we distribute information resources.

O’liver could always use extra minders, and we invite our partners and other community groups to join us for these walkabouts. When with O’liver, you will always be greeted with smiles and hugs. If you are interested to become O’liver on one of these walks, we will also be offering ‘Becoming O’liver’ training sessions. Let us know if you are interested.

Down Your Street Following the success of the last two Down Your Street campaigns, we will be asking you to help us do some letter-

boxing again. Over 6,000 bookmarks were distributed in 009 in more than 40 suburbs; and more than 8,000 were distributed in 010. You can distribute as many or as few bookmarks as you like. Just take a walk down your street (or a neighbouring street) and inform your neighbours about hepatitis. There could be someone whose life you may change. You will also be doing yourself a favour with the extra exercise. To find out more or to register your interest, call Cecilia on 8362 8443 or email Cecilia@hepccouncilsa.asn.au.

Children’s Colouring-In Competition The colouring-in competition in libraries is on again. While these competitions are run mainly through public libraries, if you run a facility such as a day care centre for children and would like to participate, give us a call (8362 8443) or email us at Cecilia@hepccouncilsa. asn.au.

Adventures of O’liver Photo Competition

The Adventures of O’liver continue...

There’s no age limit for this activity, and no limits to your imagination and creativity either. Here is your chance to take O’liver to exciting places and experiences. We will provide an O’liver image which can be downloaded, printed and cut out. Take a picture of the cut-out O’liver with you and your friends, or your pets, doing interesting things. Or, if you wish, you can do digital montages. There will be some great prizes to be won. Look out for further information.

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AM Anna Kemp being presented with7/06/2011 her 9:43:53 award

Digital tales for Drug Action Week In June 010, the Hepatitis C Council of SA was invited

by James Nash House to participate in their Drug Action Week events by having a stall. HCCSA was really glad to take part. After the week, we invited a James Nash worker to provide us with more information about the facilities and how we could work together in the future (see the article in Issue 49, online at http:// tinyurl.com/jamesnash, for more information on this).

In November 010, our first education session was delivered to the residents.

Photo CC MizzD www.flickr.com/photos/ctcvistaqueen/172342675/

award

James Nash Stories

Following that education session, in March this year the Council brought up an idea with James Nash staff about producing digital photo-stories with the residents. This idea was strongly supported by the worker and the residents.

So began a joint project with James Nash, and a wonderful 6-week journey with the residents.

In the end, there were four fantastic residents who participated in the making of digital stories. With the help of Lina, an AOD specialist, the process went ever so smoothly. Apart from selecting participants, Lina also made sure that the room was available for us. She was the prime enabler in getting the participants to put their stories onto digital media.

educator connected with the participants and the discussion was robust, interesting and, most importantly, fun. We also talked about what was to be expected in doing the digital story.

mock recording, with mistakes made in pronouncing the words and umpteen re-recordings to make it perfect. But, luckily, all the participants were ready for the real recording in the following week.

The second week was dedicated to brainstorming stories from the participants.

I have to admit there were a lot of colourful tales that the participants would have liked to tell. But after long consultation with the participants we decided that below three minutes was just enough time to tell the stories with the messages they would like to convey.

In the fourth week, all the participants came in, proud and with self-esteem abounding, and happily recorded their stories to be heard and shared. We got the participants to choose some pictures and music to accompany their story in the fifth week. And in the final week we tied up some loose ends.

We used the third week to polish up the participants’ stories, as well as to familiarise them with the digital story software that we were using.

We also tried mock recording of the stories. This was the most fun week that we had encountered. It is one thing to write a story but it is another to record it. There was a lot of laughter when we tried the

At this moment the combined digital story is undergoing its final tweaking before being launched during Drug Action Week, on June at James Nash House.

I would like to personally thank all the participants for their wonderful stories and colourful characters, and to Lina, who was so valuable in making this project work.

Mahdi Nor

In the first week, with the help of hepatitis C peer educator Fred, we talked about hepatitis C. This was done in a friendly and informal manner. Our peer Hepatitis C Community News June 011 • 5

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Hepatitis C in Country SA Rural communities and Hepatitis C 1 in 100 people in Australia are affected by hepatitis C, and about 30% of hepatitis C notifications in South Australia are from rural areas.

Possible issues people living in rural areas may experience include: • no specialised hepatitis C services outside the metro area (e.g. treatment prescribers and liver clinics), • having to travel long distances to access services, and • perceived or existing confidentiality issues (e.g. they may be related to or personally know the person working at the health service or clean needle program they would otherwise attend).

The Hepatitis C Council of SA visit rural areas regularly to provide formal and informal

education sessions for workers and communities. It is an opportunity for people to learn more about a virus that many people have, but which is often misunderstood.

We visit your area to make the sessions easy to access and to provide simple-tounderstand information about hepatitis C. Knowing about hepatitis C prevention, transmission, treatment, disclosure, stigma and discrimination are important. It can be difficult living with hepatitis C in a rural community, dealing with misunderstanding and stigma.

Our Rural Hepnet lets members get updates on where our educators are visiting and when sessions

are on in the region. If you are affected by hepatitis C, or are a health or community worker, and you would like us to visit your region for an education session, or if you would like to become a member of the Rural Hepnet, please email michelle@ hepccouncilsa.asn.au. Please note that your email address will be kept confidential.

Michelle Spudic Rural Educator Source: Communicable Diseases Intelligence Volume 33 No June 009: Australia’s notifiable diseases status, 007: Annual report of the National Notifiable Diseases Surveillance System - Bloodborne diseases

Photo CC Marj Kibby www.flickr.com/photos/marj_k/3889039532/

People in rural or regional areas can have limited information about hepatitis C, because often services which provide education, support and discussion are focused on metropolitan areas. Unfortunately, this can mean myths may not get debunked, and sometimes it’s too late for individuals to make informed decisions on reducing the risk of transmission.

Contact or join RURAL HEPNET at michelle@hepccouncilsa.asn.au Hepatitis C Community News 6 • June 011 Internal Pages - Issue 52 - June6 6

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Hepatitis C in Country SA Love your Liver Lunch at Maitland Hospital As one of the educators at the Hepatitis C Council, I visited the Yorke Peninsula on 0 April to provide hepatitis C education and attend a Love Your Liver Lunch at Maitland Hospital.

Louise, the infection control nurse at the hospital, organised a fantastic lunch where nurses and other health workers shared some yummy liver-friendly foods, including spinach and tomato frittata (made with home-grown organic produce), low-fat pumpkin soup, and a rice and veggie dish. The Love Your Liver Lunch provided a great opportunity to chat about hepatitis C, nutrition and liver health, and was an education networking opportunity. Lots of resources were available for the staff to take with them,

including recipes for the tasty dishes on offer.

With everyone well fed, the session got underway.

Nicole provided information on the hepatitis C virus, transmission, testing and treatment, and there was a lot of valuable discussion about the social aspects of hepatitis C, including discrimination and disclosure, and how healthcare workers can make services more appropriate and accessible for people living with hepatitis C. The education session and Love Your Liver Lunch was a fun and interesting way to learn more about hepatitis C. Particular highlights included listening to a personal story about living with hepatitis C, and playing the Transmission card game, to learn about how to prevent hep C being passed on.

Hospital staff said that after the session their knowledge of hep C increased, and that they felt more comfortable discussing hep C with clients than before the session.

Overall, it was a great afternoon with lots of enthusiasm from everyone involved—keep up the good work, Maitland Hospital!

If you are interested in holding an education session for a workforce or client group, please contact John McKiernan, Coordinator, Education Program, on (08) 836 8443, or email john@ hepccouncilsa.asn.au.

To find out more about liverfriendly recipes, please visit the Hepatitis C Council of SA website, online at www.hepccouncilsa.asn.au.

Nicole Taylor

Nicole Taylor (front, far right) with the Maitland crew and the ingredients for a Healthy Liver Lunch

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From Burundi to Adelaide Hepatitis education with a new community group On 9 April, the Hepatitis C Council of SA was invited by the Vietnamese Association of SA to deliver an education session to a group of Burundian volunteers.

The Burundian community is a relatively new arrival in South Australia. With the guidance of the staff of the Vietnamese Association, who have extensive experience running a successful and supportive community group, the Burundians are learning the ropes of running their own community organisation in Adelaide.

Burundi is a small country on the northern shores of Lake Tanganyika, bounded

to the north by Rwanda, on the west by the Democratic Republic of Congo, and on the east by Tanzania.

It has the second-highest population density in SubSaharan Africa, and is sadly one of the ten poorest nations in the world.

The Burundian Community in South Australia is a not-for-profit organisation established for people from a Burundian background or for those with an interest in supporting Burundians. The organisation aims to bring these people together to provide support and to unify them in achieving better lives for Burundians in SA, helping them in integrating

into and participating with mainstream South Australia.

This process, as we all know, is a two-way street, and it is lifelong. Continuous support is needed to ensure these aims are met.

Sixteen participants, committed and thirsty for knowledge, took part in the hepatitis education session.

The group consisted of mixed ages, genders and educational levels, some of whom have completed various degrees back in their home towns. We also have two great Burundian pastors from Pentecostal and evangelical churches who participated in the education session.

Photo CC d_proffer www.flickr.com/photos/deepphoto/463878580/

The road to Bujumbura, Burundi’s capital Hepatitis C Community News 8 • June 011 Internal Pages - Issue 52 - June8 8

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Photo CC Christine Vaufrey www.flickr.com/photos/christing/5681382532/

The countryside of Cankuzo, north-east of Bujumbura

Photo CC d_proffer www.flickr.com/photos/deepphoto/463878580/

In the session we explored the meaning of hepatic illness in the Burundian community, and looked at the local ways of talking about hepatitis and the liver.

We also explored values and belief systems surrounding the hepatitis viruses, which let us debunk the various common myths. We also played transmission games, showing just how hepatitis viruses are spread.

Some participants also suggested having more games and activities in the future, as these were most useful tools for their learning.

From the evaluation, it seems that the average group knowledge has doubled.

I had a fantastic time with the Burundian community.

I was met with eagerness,

kindness and fun from the group. I also learnt a few things along the way. We are looking forward to doing more work with the Burundian community in the future. My thanks to Modeste Hatungimana and Nguyen Mong Lan who organised the session.

Mahdi Nor

The session was organised for two hours, but was so successful that it went for three. From the evaluation forms, the group felt that they have learnt a lot about the hepatitis viruses and would like to have similar sessions or forums in the future. The group appreciated that the session was interactive rather than didactic. They also felt that it will be useful if more such information was to be given to their community.

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Frank’s Story Treatment and living in the country Living in the country has been the central fact of my life. I was born out here, I’ve lived almost all my life—except for a few years in Adelaide for uni—out here, and I’ll probably die out here, though hopefully not for a few years yet. Then they can bury me out here.

Adelaide’s a four- or fivehour drive away, and that’s fine for the most part. The only times it really worries me is when I have to do stuff related to my hepatitis C. I’ve had hep C for years.

I’m pretty sure I know how I got it: injecting speed with mates. I don’t know exactly when it happened, because I was doing stupid things for several years. To be honest, I’m still doing stupid things, just different, non-virusrelated things.

I was first diagnosed in the early 2000s, a bit less than a decade ago. I’d been feeling

pretty crook off and on for ages. I thought it might be overwork, to be honest, but I scored long-service leave from my job and had three months sitting around doing bugger-all, and I still felt like crap.

So I did the usual thing: GP visit—we had a GP in those days, rather than having to go to the next town—and then blood tests, all that stuff.

I actually took ages to even go and get the test results, because I was feeling so sick that I couldn’t be bothered going back to the doctor’s office. He kept ringing and leaving messages for me to come in, and I kept putting it off. I told myself at the time that it was laziness, but I think now I was a bit scared about what he might have to tell me.

Finally he got me to come in—I think I actually had to go back, to get a new prescription for Ventolin

or something, and told me I had tested positive for hepatitis C. I didn’t know what that meant, since I thought you got hepatitis from bad seafood, and the only seafood I consume was crumbed and frozen six months before I eat it.

The GP explained what hep C was about—nothing to do with seafood, which is hepatitis A—and asked what might have exposed me, and the only obvious culprit was needle-sharing, since there were quite a few times when I re-used somebody else’s needle or shared a swab or something like that.

He thought I should have some more tests done, and was saying I could get my liver looked at in the nearest hospital. But there was just no way I was going to do that. It’s the only hospital looking after a huge piece of South Australia, a huge

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area of land without that many people actually living on it, and the chances of me meeting someone else I knew there, or even of one of the staff recognising me, seemed like too big a risk.

Like I said, I’d been in a steady job for years, and I didn’t want my boss finding out things about my past and deciding I was some drug-abusing stereotype that needed to be thrown into the dole queue.

I had visits for medication, visits for blood tests, visits to talk to my specialist and the nurses. They were all pretty good. The side-effects weren’t great. It’s not that they were extreme, exactly, but that there wasn’t anyone at home I felt I could talk to about them. The whole ‘a problem shared is a problem halved’ thing might actually be true. I’ve met someone and got married since then, and she knows all about my past, but at the time I was

keeping all of these problems to myself. I used up all my sick leave, but nobody asked any questions, and if they had I guess I would have told them to sod off.

I had genotype 1 of hep C, so I went for the whole 48 weeks of treatment.

But at the end I had what they called SVR (sustained virological response), meaning the virus was cleared out of my system, and it stayed that way when they did another blood test the following year. Result!

I don’t know if I was being paranoid about not getting treatment locally. But I do know that whatever my reasons for going about things the way I did, it was absolutely worth the effort.

I can’t tell anyone else what to do, but it’s definitely an option worth exploring.

Frank

Photo CC Drew Douglas www.flickr.com/photos/kabl1992/1005774269/

And so that’s how I started making what would end up being a whole lot of visits to Adelaide. Nobody knew me in the capital—although, weirdly, I did once meet someone who lived down the street from me in a waiting room at the RAH, but she was there for something pretty embarrassing, so the last thing she wanted to do was chat.

It was starting treatment that really made regular visits to Adelaide necessary. First up I had the biopsy, since this was back when you had to have a liver biopsy to get on treatment. I’d never seen such a big scary needle outside of a horror film. I’ve lived through having that thing stuck in me, so nothing else holds any fears for me now.

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The Treatment Journey What will happen if you go on treatment, and what it all means If you are diagnosed with hepatitis C, treatment is available. The sooner you seek treatment, the better the chances of your clearing the virus. What I’m going to describe below is about the journey of seeking and starting treatment. We would advise you to speak to the liver nurses or ring us at the Hepatitis C Council to get more information (see contact information on page 14).

Remember, when you decide to seek treatment, it does not mean that you will be started on the medications immediately. There are processes in place to ensure all necessary precautions have been taken by the nurses and doctors to make sure you are in the best physical and mental health for treatment. This will ensure compliance is met, and you will therefore have a higher chance of completing treatment successfully.

The process of starting treatment might look as follows; but bear in mind that not all journeys will be the same.

Pre-Treatment 1. Initially you might see your GP to find out your hep C status; your GP will conduct an antibody and PCR test. If both are positive this means you have hepatitis C and your GP will recommend that you think about hep C treatment.

2. Your GP will refer you

to a liver clinic to start the treatment process.

The following major metropolitan hospitals have a liver clinic:

• Other blood tests to identify/exclude other causes of liver disease

• Royal Adelaide Hospital

• Mental health issues will be identified.

Liver nurses will address issues such as alcohol consumption, obesity and homelessness, all of which can affect treatment outcomes.

• Flinders Hospital • Queen Elizabeth Hospital • Lyell McEwin Hospital • Nunkuwwarrin Yunti liver clinic (for people who are of Aboriginal or Torres Strait Islander background) • Warinilla and Southern DASSA provide treatment to DASSA clients Appointments with a liver clinic might take several weeks or months depending on the hospital’s waiting list.

3. Once you have been referred to the liver clinic, the nurses may assist with the ‘work-up’ prior to seeing the specialist. At some hospitals the workup tends to occur with the specialist and, thus, requires an additional visit to outpatient department.

The work-up consists of: • HCV Antibody test, and then, if this is positive, an HCV PCR (to see if you currently have the virus), genotype and viral load tests • Liver function tests • Full blood examination • Thyroid function tests

• Liver ultrasound (recommended)

4. You might be asked to have a Fibroscan, or a specialist may suggest a biopsy of your liver to see the stiffness and determine the level of fibrosis of your liver.

Biopsy of the liver is no longer required for treatment, but as it is still the most accurate procedure used to determine the extent of fibrosis and liver disease, some specialists may recommend it.

These four steps can sometimes take a while before any decision can be made about starting you on treatment. If you have preexisting issues, such as mental health issues, it might take longer to ensure that your condition is under control.

This might include visits to a psychiatrist for evaluation.

Understanding this process can be crucial for some, as it can debunk a lot of myths and put your mind at ease.

It is part of human nature that we might want things to happen immediately, but the

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One of many blood tests involved in the treatment process

Photo CC K. Latham www.flickr.com/photos/programwitch/3462041555/

process in place so that all factors are taken into account to make sure people have the best chance possible at successfully completing treatment.

TreaTmenT 1. You will be seeing a specialist hepatitis C nurse who will educate you about the storage, dosage and administration of the two medications, pegylated interferon (injections) and ribavirin (tablets). The nurse will also go over the possible side-effects you may

experience on treatment, and what to do if they are severe or you are worried about them. . Blood tests will be taken as a baseline prior to treatment commencement.

These include: • a full blood count, • liver function tests (predominantly looking at ALT, which is an indicator of liver inflammation), • baseline thyroid function tests, and

3. Four weeks after treatment commences, blood tests will be repeated to monitor progress, including a HCV PCR test to see whether you have had a rapid viral response (RVR), or whether the virus is undetectable at this point. Having undetectable virus at 4 weeks increases your chances of a sustained viral response (SVR), which increases your chance of clearing the virus.

• HCV viral load. (continued over page) Hepatitis C Community News June 011 • 13

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using sterile equipment

The Treatment Journey (from previous page)

4. Blood tests will continue, on average every four weeks, unless your specialist or nurse asks for additional tests based on how you are going with treatment.

5. If you have genotype 1,the most common genotype in Australia, your viral load will be tested at 12 weeks. If there is at least a 2log drop in viral load, treatment will continue (this means a drop of 2 zeros off your total viral load, e.g. 5,000,000 to 50,000). If there is not at least a 2-log drop in viral load, treatment will be stopped as it will be unlikely to work.

6. Generally you would need to be reviewed by either your GP or a specialist hepatitis C nurse every four weeks to review blood tests and see how you are coping with treatment. You will see your liver specialist about once every three months.

the Info & Support Line for more details, or check our website for the dates of the support meetings.

After Treatment When treatment is completed (at either 24 or 48 weeks, depending on genotype and your viral response), a blood test will determine if the virus is still detectable.

1. If the PCR blood test shows the virus is undetectable at the end of treatment, six months after the completion of treatment, you will need to have another blood test to see if the virus remains undetectable. If there is no virus detectable then you will have achieved a sustained viral response (SVR). This means that you have cleared the hepatitis C virus.

3. If you do not achieve SVR, It’s not the end of the world! Talk to your doctor and nurses, as there are other options they can explore with you.

Completing hepatitis treatment is a journey in itself, whether or not you clear the virus. There might be some post-treatment issues that you need to resolve. Talk to the Hepatitis C Council of SA, or try MOSAIC (a service provided

by Relationships Australia), who can provide counselling and case management.

Mahdi Nor Contacts Hepatitis C Council of SA Phone: 1300 437 222 (Country Caller) www.hepccouncilsa.asn.au

2. If you achieved a SVR: MOSAIC (Relationships Australia)

7. Medication is usually supplied to you for one month, though some hospitals dispense it on a 3-monthly basis, especially for rural patients.

• You will remain antibody-positive, as this is a marker of having been exposed to the virus in the past.

Having antibodies to hepatitis C do not protect you from being re-infected with the virus, so you will need to ensure that you are not exposed again.

While on treatment, if you experience any side-effect from the medications, the nurses at the liver clinic can provide you with extra support. The Hepatitis C Council of SA runs a fortnightly support meeting , Calming the C. Please call

• You will not be able to donate blood even when you have been cured, as the blood bank does not accept blood from anyone who has ever had hepatitis C. However you may be able to be an organ donor.

• Anton: 8222 2081

Phone: 8245 8100 Liver Clinic Nurses Royal Adelaide Hospital • Jeff: 8243 5675 • Jo: 8222 4000 Flinders Medical Centre • Amy & Rosalie: 8204 6324 Queen Elizabeth Hospital • Margery: 8243 5693 Lyell McEwin • Jeff: 8243 5675

Hepatitis C Community News 14 • June 2011 Internal Pages - Issue 52 - June14 14

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

Tucking In Food as an engagement tool groups at the Vietnamese community centre and other partner organisations.

The benefits of good nutrition and a healthy diet for people living with hepatitis C are obvious. A healthy diet may help to relieve symptoms, provide energy, provide nutrients to liver cells, and boost the immune system. Conversely, a poor diet can lead to fatty liver disease and/or a lack of energy and a weakened immune system.

While education about nutrition is an important part of health promotion for people living with hepatitis C, we have also found it to be a useful engagement tool in working with marginalised target populations.

Food is a universal basic need. It is a common focus in community celebrations around the world—crossing cultural and ethnic barriers.

The Hepatitis C Council of SA has been running community-based projects which use food as an engagement tool in marginalised target

populations. These have shown promise in creating opportunities to develop trusting and enabling relationships to impart health promoting messages with a hepatitis C focus.

Following the successful New Country, New Food project with Bhutanese refugees (see video at http:// bit.ly/newcountrynewfood), in partnership with the Migrant Resource Centre, and the introduction of Love Your Liver lunches during Hepatitis Awareness Week (see page 7 for more on these Lunches at work), we have widened our use of food as a means of engaging with our target communities.

Our Information and Resources and Peer Education programs currently have a project which runs monthly information stalls at the Community Food SA centre at Gepps Cross.

Customers can sample the nutritious, easy-to-make food on offer, pick up recipes (which include information about hepatitis), and speak with staff and volunteers about other issues if they so wish. A peer educator is also on hand for quiet, more indepth discussions.

This 1 -month project is in its eleventh month, and will be evaluated in July 011.

Cecilia Lim Source: Hannah Deussen, Exploring the use of food as a community engagement tool for the purpose of Hepatitis C health promotion and education

by Hepatitis C Councils in Australia, 010

HCCSA’s peer educators use food as a tool of engagement regularly in their work, organising Love Your Liver meals with support Hepatitis C Community News June 011 • 15

Internal Pages - Issue 52 - June15 15

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Delays for New Hepatitis Treatment (continued from page 3

She went on to explain the government’s approach: “The Government recognises and values the role of the Pharmaceutical Benefits Advisory Committee in assessing the clinical and cost-effective [sic] of proposed PBS listings. We understand the intense scrutiny the Committee submits each new drug that comes before it, and would not act to compromise its integrity or the independence it needs to do its job. But it is also important to recognise that it is properly my responsibility as the Health Minister, and the responsibility of Government, to decide whether to list a new drug on the PBS, taking into account PBAC’s recommendations, competing priorities across

Take Control of Jack’s Life!

the health portfolio and the fiscal circumstances facing the government.”

So at this time, it looks very much as though new hepatitis treatments will be significantly delayed.

However, HCCSA and the other Australian hepatitis organisations will continue to agitate for this to change, lobbying both state and federal ministers.

Minister Roxon’s full comments can be seen at: http://tinyurl.com/roxonpbs.

You can contact her office by email at Nicola.Roxon.MP@ aph.gov.au, by phone on (03) 9317 7077, or by post at 1 Thomas Holmes Street, Maribyrnong, Vic 303 .

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

Nicola Roxon in Parliament

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

Hepatitis C Community News 16 • June 011 Internal Pages - Issue 52 - June16 16

7/06/2011 9:44:16 AM

Useful Contacts & Community Links Hepatitis C Council of SA

Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information.

The Calming the C Support Group is also run by the Council.

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).

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) 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.

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.

SA Health has contributed funds towards this program.