C

Hepatitis

Community News #49 • September 2010

Hepatitis & Nursing • Inside the Flinders Medical Centre

Editorial

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: 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 Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Will Debra Michele Coordinator of Education Programs: John McKiernan

This issue takes a closer look at two inter-linked topics. First of all, we examine the current state of liver disease nursing in SA, and what the future might hold. Secondly, we talk to some of the people involved in liver disease treatment at the Flinders Medical Centre. (In our next issue, we hope to follow this up by talking to some of the staff in similar roles at the Royal Adelaide Hospital.) We also look at the possibilities of an exciting new medication in HCV treatment, telaprevir (see page 13), and talk about its future application with Rosalie Altus of the FMC (see page 6). Finally, thank you to everyone who took the trouble to fill out the readers’ survey. Unfortunately we did not get as many responses as we hoped. To get a better idea of our readership and membership, we have set up an online survey form. Please take a few minutes to fill it out at http://bit.ly/hccn_survey and you will help to ensure that the Hepatitis C Community News is the magazine that YOU want to read.

Educator: Mahdi Nor

About the Cover

Peer Education Coordinator: Maggie McCabe

Inside the Flinders Medical Centre (Photo by James Morrison)

Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Dayna Gauri Kathryn Mark Phil Philip Yvonne Publications Officer: James Morrison Info and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim

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

Contents 1

Why Are We Waiting?

2

Chronic Liver Disease Management

Librarian: Joy Sims

at the FMC 5

Hep C-Free, and Feeling Good

BOARD

6

Liver Disease Nursing at the FMC

Chairperson: Arieta Papadelos

7

Beyond Magill

Vice Chairperson: Kristy Schirmer

8

The CHI Study

10

James Nash House

Secretary: Stefan Parsons

12

New Treatment Test

Treasurer: Darrien Bromley

13

Telaprevir

Senior Staff Representative: Kerry Paterson

14

The Federal Election & Hep C

16

C-Pix at Onkaparinga

Ordinary Members: Lisa Carter Catherine Ferguson Bill Gaston Carol Holly Shabeena Laundy Justine Price

Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Council members and the general public. “Wait. What?”

The future of liver disease nursing in SA

S

outh Australians living with hepatitis C waited over 20 years for the first SA Hepatitis C Action Plan, which was launched last year in May. One of the two key priorities of the Action Plan was to expand access to hepatitis C treatment across South Australia—as viral clearance achieved by treatment will stop progression of liver disease—and SA Health made a commitment to fund nine hepatitis C nurses over the next three years (four nurses in 20092010, three in 2010-2011, and two in 2011-2012) as the main funding initiative of the Action Plan to achieve this priority. We have waited for over 12 months since the launch of the Action Plan, and now the Hepatitis C Council of SA welcomes the recruitment of clinical nurse consultants to four of these positions. But just as we breathed a sigh of relief that some real government investment was at last taking place to address the growing burden of hepatitis C disease in South Australia, again it seems we must wait!

Like our medical colleagues at the viral hepatitis treatment clinics, we were appalled to learn that there is now no funding for the three positions that were ‘approved‘ for this current financial year (20102011). And we now may be waiting in vain, as there is also no guarantee of funding in future years, either. Reneging on this commitment at this time is of particular significance for people affected by hepatitis C living in rural and regional areas of South Australia, as the only one of the ‘approved’ nurse positions specifically targeting these areas was amongst the three now not being funded this year. Once again rural communities are missing out on treatment services. Hepatitis C treatment uptake in South Australia, similar to the rest of country, remains low. Less than 2% of those eligible for it actually undertake treatment each year. The 2006 Hepatitis C Estimates and Projections Report prepared by the National Centre in HIV Epidemiology and Clinical Research concluded

that a tripling of the number of people treated across Australia in 2005 was required to decrease the number of people living with moderate liver disease or cirrhosis caused by chronic hepatitis C. It is now 2010, and although the number of people undertaking treatment has increased since 2005, we are nowhere near this target.

MAKE E A NOISE! E

Why Are We Waiting?

Despite this evidence at the national level, and also evidence presented to SA Health that investment now will save money for the health system, and—more importantly—save lives, it seems that what was promised to address this health priority last year, has, just over 12 months later, been knocked over by the SA Treasurer’s bottom line. If you are not happy about waiting, please tell your local SA Member of Parliament. The contact details of SA Members of Parliament can be found at www.parliament. sa.gov.au/Members/Pages/List% 20of%20All%20Members.aspx

‘Liver Mate’ Warning A product widely advertised on pay-TV, especially on the TV Shopping Network, as “a therapeutic formula for the support of the liver and gallbladder and which also helps to maintain a healthy digestive function” should not be used by people with hepatitis C or other liver-damaging diseases. It contains barberry (Berberis vulgaris), which can be significantly dangerous to an already compromised liver. For further information, see www.hcvadvocate. org/hepatitis/factsheets_pdf/CAM_avoid.pdf or www.hepatitisaustralia.com/about_hepatitis/ complementary.html. Hepatitis C Community News September 2010 • 1

An Ongoing Relationship Chronic Liver Disease Management at the FMC

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was lucky enough to be able to talk recently with Rosemary McCormick and Rachel Wundke, the Clinical Practice Consultants in Chronic Liver Disease in Flinders Medical Centre’s Department of Hepatology and Transplant Medicine. The Liver Failure Program which they run has been set up to work with people who have chronic and serous liver problems, including those caused by hepatitis C, such as cirrhosis. It is also associated with the department’s Thursday afternoon clinics, where hepatology consultants, a Registrar and a nurse see patients with viral hepatitis and general hepatology problems. Over the past year, Rosemary and Rachel’s main focus has been an ongoing trial looking at just how close clinical management helps those with advanced liver disease. As Rachel explained, “The background to the trial is that, up until now, chronic disease management has largely been directed at heart disease, respiratory failure

Hepatitis C Community News 2 • September 2010

and diabetes—they’re the big three—and they’re very well researched. But liver disease has almost nothing. There’s no proof that chronic liver disease management actually helps people with cirrhosis, for example, so Dr Wigg and the hepatology department here wanted to do a randomised control trial. “We started randomising last year in May, and we’ve finished now. We have 60 patients, and 40 of them are receiving case management from us, and 20 are not—the control group. The control group are still getting care, the usual medical care, but not that intensive case management that this clinic provides. “That trial is still running, and we’re finishing up in May next year with those results. We’re very much looking forward to it. At the moment it looks as though the extra case management means that people might be coming in and seeing the doctor more often, for check-ups, because we’re monitoring them. We’re

very excited, and very keen to see what the results will be, because there’s no information about this out there at the moment.” Rosemary elaborated on other benefits of the study. “To have a bit more of a description of the liver disease population will be really valuable. There is so much information about the hospital management of acute liver disease, but nothing about the screening and maintenance of people in the community. “ Rachel: “We’re looking at people’s quality of life, and at how in control of their life people feel. We talk to people about that every six months, and we’ve just got ethical approval to do a long-term, longitudinal study of that. We hope to carry that on over four years.” Rosemary: “For chronic disease, that’s the really important thing. You need to see how people’s lives change over time.” Rachel: “And even if we can’t always change it, we will be able to describe how the quality of life of someone with cirrhosis changes over four years.”

(This page): Flinders Medical Centre (Over, L-R): Rachel Wundke and Rosemary McCormick

The clinic itself is very busy. Because Flinders runs South Australia’s liver transplant unit, people are directed there from all over the state. Rachel: “The number of clients we see is quite high—we see 50 to 70 patients a week, and there is a waiting list now, even though this is quite a new clinic, which has only been going for a few years. But we try to get patients on the waiting list through another way, so that we can still

see them. Rosie and I don’t see a lot of people in the clinic yet, but we do have a rapid response service by phone, so people can call us and we go to see them in their homes.” Rosemary: “The number of people we can see is affected by the trial, obviously, but we’ve really started developing the outpatient referral process now, so that any doctor who has someone who might be, say, at risk of hospitalisation, can refer them to us and we can intervene then to help. That’s just getting under way now.”

How much of the clinic’s workload is made up of hepatitis C patients? Rachel: “It’s our second-largest group. The biggest is alcohol. Out of the 60 people that we’re looking at for the trial, 42% are alcohol-related, 33% are hep C and alcohol, and 10% are hepatitis C. So almost half of our clients have hepatitis C, but a large proportion of those have alcohol-related problems too.” Rosemary: “Treatment of liver disease with someone who has hepatitis C can obviously be difficult if they’re still drinking a lot. The treatment (continued over page)

Hepatitis C Community News September 2010 • 3

(from previous page)

of hep C itself can take up to a year, and if they are still drinking then that reduces the chances of the treatment being effective. “It’s a matter of helping people find the right time in their lives to deal with their problems. The cirrhosis causes decreased platelets and other symptoms which you really want stabilised before going on treatment, as treatment can have other negative effects as well, so finding a good time to do treatment when you have cirrhosis of the liver is more difficult. Often we don’t, because it’s never the right time. “But having said that, there are a couple of people where we’re just going to bite the bullet and try, because if they could get rid of their hepatitis then the cirrhosis would calm down and stabilise.” Rachel: “Alcohol confounds the hepatitis problems that are already there.” Rosemary: “Exactly. When we look at an inpatient—say, someone has come in in a fairly catastrophic state, with bleeding varices and alcoholic hepatitis, then that really can be a catalyst for change. They just don’t want to be like that again. But sometime they’re not ready to change, so they go home, and may return to that environment which encourages drinking. We offer various interventions, because not everything suits everybody. You need to take a step back and see what causes them to drink like that in the first place.” Rachel: “Often there are mental health issues, or other stresses in life. We had one gentleman who was drinking to take away the pain in his sinuses. There are so many different reasons why someone might drink Hepatitis C Community News 4 • September 2010

excessively. We need to talk to them and find out what’s going on in their lives.” Rosemary: “Alcoholics Anonymous is right for some people, but not all. We often try to encourage people to see psychiatrists, and do some cognitive behavioural therapy goal-setting, but you need to be willing to change. And psychiatrists can help if there’s a mental health issue at the root of things. We use DRUG ARM [Awareness, Rehabilitation and Management, a non-profit, nongovernment group dedicated to reducing the harm from alcohol and other drugs]. There are varying levels of success with all of these things. It really depends on what fits that person, at that time. “Sometimes we’ve been through everything, and you wonder what to do next. And sometimes the first thing you try works almost straight away. And even afterwards, people can relapse—that’s just the nature of the disease. The important thing is not to be judgemental, and just to help people back up on the horse.” Rachel: “The thing about this close contact model is being able to develop a rapport with the patients, so they can be honest with us, and know that we’re not going to jump down their throats. They know that, even if they can’t do anything now, we’ll be waiting here when they’re ready.” Rosemary: “Because we do follow them up, and we’re ringing them up, we do find out if they’ve fallen off the horse. We can offer encouragement and options when that happens, and just help them along. And if someone has gone back to hitting the bottle, they might not turn up for their appointments,

and that alerts us and we can follow them up to see what’s happening. The intervention between appointments seems to make a huge difference. “It’s disappointing, of course, if people fall back, but you can’t see it as a huge failing. It happens; that’s just the way the disease works. You expect relapses, and they’re sad when it happens, and you feel for them, but we just keep offering encouragement and try new things. And when people relapse, often they are very embarrassed, they’re ashamed of letting down friends and family. But they know we’re not going to give them the flick.” Rachel: “What has surprised me about this job is not people’s behaviour, but the situations in which they find themselves. How much people will put up with before they’ll ask for help or advice. That they feel it’s normal that they should hurt so much or get into so much trouble without reaching out. That hardship can often seem normal to them, given their backgrounds, so it can seem surprising to them when we say, ‘What you’re going through is actually really awful!’” They also have some advice to offer for people out in the community who are living with hepatitis C. Rachel: “If anyone hasn’t already been referred to the Flinders Department of Hepatology, if you have hep C damage to your liver you should talk to your GP about getting a regular ultrasound. Ultrasound now is seen as a definitive way of looking at cirrhosis, so if you get a yearly check to monitor how things are going it can be extremely valuable.” James Morrison

Hep C-Free, and Feeling Good James Wilson’s Story

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was diagnosed with hep C in 2004. I had gone to my doctor because I was feeling a bit run-down, and he took some blood and put me on a vitamin supplement. I was very busy then: I was working part-time, studying full-time, and doing volunteer work. Being so busy, I had forgotten all about the blood test until I was contacted by the Health Department to inform me that I had been diagnosed as hep C positive, and to tell me to get in touch with my doctor. I am a little unsure of when I actually contracted hepatitis C. However, I now know the factors which put me at risk. I began getting tattoos in 1974, and began using speed intravenously in 1976, continuing until 1999. At the time I began injecting, my friends and I knew nothing of the risks associated with these behaviours. We became aware of HIV in the mid 1980s, and we all stopped sharing needles, but we still continued to share other injecting paraphernalia. After I was diagnosed with hep C, I got in touch with as many of my old injecting buddies as I could. I told them of my hep C status, and advised them to see their doctors.

the fact that I was hep C positive to myself, but I was starting to really consider having treatment. Then I started bringing information about hep C into work and talking about it to my co-workers. I put up different posters in the office and that sort of thing, so that by the time I did disclose my hep C status, my co-workers had a good understanding of the virus and were supportive of me. I began treatment for hep C in June 2007. It wasn’t easy, but I felt that I was lucky because I had genotype 2 and the treatment only lasted 24 weeks. The treatment consisted of a once-weekly injection of pegylated interferon, and six tablets of ribavirin daily: I took three tablets in the morning and three at night. Can you imagine having a flu which lasts for six months? I had absolutely no energy, and I

felt aches and pains constantly. When I gave myself my weekly injection my temperature would soar and I would be so debilitated that I couldn’t get out of bed. Up until I began the treatment I had been a fairly heavy drinker but I committed myself at the outset to stopping drinking. However I didn’t have much choice, as once treatment commenced, I had never felt less like drinking. Now I am hep C-free, and feeling good about myself. In fact I feel better than I did 10 years ago. What I would like to voice about my journey with hep C is that anyone can have the virus—people from all walks of life—but having the virus is not a death sentence, and the treatment, while not pleasant, can be very effective in curing hepatitis C.

After completing my studies, I started working in a drug and alcohol service, and it was there that I began to realise that I wasn’t Robinson Crusoe as far as hep C went. Many of the clients of the service were also hep C positive, and this made me start thinking about treatment. Six months later, I got a job at a youth accommodation service, where I initially kept Hepatitis C Community News September 2010 • 5

Hepatitis Nursing at the FMC An interview with Rosalie Altus of the Flinders Medical Centre

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osalie Altus is a viral hepatitis nurse at the Flinders Medical Centre. She spoke to the Hepatitis C Community News about her role and how the FMC helps those living with hepatitis C. Viral Hepatitis Nursing “I’ve been in this specific position since May, but I have been working at Flinders as a viral hepatitis nurse since 2005. The nature of the job is broadly similar, but it has taken on a new direction under the current funding arrangement. It has allowed us to see a significantly larger number of patients, and it’s wonderful for nurses to be able to see the patients on an ongoing basis, and to support them through whatever issues arise. “Amy and I are the dedicated viral hepatitis nurses at the clinic here. We work with the specialists, and also with Rosemarie and Rachel, the Clinical Practice Consultants in Chronic Liver Disease. “All of our workload is specifically hepatitis, and almost entirely hepatitis C. Hepatitis B probably makes up around 5% of our work at the moment.”

for hepatitis C-related issues, with the rest there for other liver problems. “New patients are referred to us by their GPs. They see a consultant, who works them up, or completes any work-up process that has been started elsewhere. Then they complete a referral form, which is given to me or Amy. We then organise an education session with the patient, spending some time with them providing the information which they need, and then getting them ready to start on treatment. “We generally run what you might call a nurse-led sharedcare model of care here. The patients see the consultants to start with, and then perhaps every two or three months, but the rest of the time we work with them. But if the doctors want to get more patients in for treatment, they can see the nurses even more frequently. We do case management, and discuss any emerging issues with the patients and with the doctors as they come up.

“Fortunately, the number of people who stop treatment because of side-effects is not very high. For example, we’ve had 49 people start treatment since the beginning of 2010, and of those, only five had to stop because of the side-effects. “We also work with the cirrhotic patients who come under Rosemarie and Rachel, administering their treatment. All the parts of the liver clinic here liaise with each other.” Telaprevir (see page 13) “We’re looking at perhaps 18 months to two years before telaprevir comes into Australia. At the moment we’re assessing our patients who have genotype 1—telaprevir looks very promising, but only for genotype 1 at this stage—and considering liver biopsy and staging. “If there’s no urgent need for treatment, we are suggesting that people wait and get reviewed later on, as it may well improve their chances when telaprevir is introduced.”

The Clinic “We run a clinic at the Flinders Medical Centre on Thursday afternoons. Yesterday, for example, there were nine patients on the nurse list, and another nine in for treatment or for assessment by the consultants. I would say that around 80% of the patients at the Thursday clinics are there Hepatitis C Community News 6 • September 2010

The central courtyard at Flinders Medical Centre

Beyond Magill Improving the lives of youths in custody Looking Ahead “In the longer term, we need to look at increased treatment numbers, and also increased assessment numbers, since treatment isn’t necessarily right for everyone. Also, if we screen more people and find that they can wait, then that means there will be more people who can make use of telaprevir when it comes in. “There are some changes coming up, and there is a state-wide model of care being developed which will acknowledge that different areas have different systems and different needs, but over the next 12 months or so there will be a lot of planning and evaluation, and an attempt at increasing shared care and increasing practitioner involvement. We also want to look at other ways of reaching people. For example, Flinders has an outreach clinic at Warinilla. We do treatment and management out there, which means that people don’t have to come into a hospital. We’re also looking at a nurseled model through southern DASSA, again so that those patients will have significantly fewer hospital visits, but will still get the amount of care and monitoring that they need.

O

n July 23 this year, the first of the Youth Affairs Council of South Australia’s (YACSA) Policy Council Think-Tanks took place. Called ‘Beyond Magill’, the event was intended to help YACSA determine their next steps following the successful campaign to close the Magill Youth Training Centre. It was clear from the attendance at the event (more than 80 people, including many politicians from both major and several minor parties) that the issues of juvenile detention and juvenile justice remain very important to youth and community sector workers, politicians, young people and the public. The Hepatitis C Council of SA strongly supports YACSA’s work, especially given that educating young people and people in corrections facilities about hepatitis C are among our highest priorities. ‘Beyond Magill’ featured three guest speakers: Jackie Bray, Director of the Department of

Families and Communities’ Youth Justice Directorate, Renae Reimers, from the Courts Administration Authority, and Tony Malone, Manager (Governance) for the Department of Corrective Services in the ACT. Jackie gave a comprehensive update on the progress of the centre replacing Magill, including reaffirming the Government’s commitment to having a new centre based on human rights principles up and running by December 2011. Renae spoke about the intent and effectiveness of current court-based diversion programs for young people. Tony gave an overview of the challenges and benefits of setting up and operating a prison based on human rights principles, using Canberra’s Alexander Maconochie Centre as a case study. The following action statement was drafted by YACSA, based on extensive discussions amongst those who attended the event.

“Further ahead, we’re also looking at setting up in Noarlunga or Aldinga, at a GP Plus clinic, where there could be viral hepatitis nurses doing a screening program for patients there. Over time, if there was an interested GP, there could be a shared-care system set up there to look after patients as well.” Hepatitis C Community News September 2010 • 7

The CHI Study

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he researchers at the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University are inviting Australians to take part in a national study on the health and social impacts of living with hepatitis C. It is the CHI (Charting Health Impacts) Study, and it will follow a group of people over time—looking at all the health and social aspects of life—so ARCSHS can tell community organisations, doctors and governments what it is really like to live with hepatitis C. This project is funded by the Australian Government Department of Health and Ageing. Project Summary The study will: • identify the health and social impact of hepatitis C infection, • provide information to improve health and social support services for people with hepatitis C, and • help develop healthier public policy. ARCSHS are asking people who have been told they have hepatitis C to complete an online survey. ARCSHS will then contact them again at regular intervals (6-monthly in most cases) to find out how their life has changed since they were last talked to. The study is open to anyone in Australia with a history of hepatitis C. If you have ever been told that you have hepatitis C (even if you have had treatment since then) and you are interested in participating in the study, or if

Hepatitis C Community News 8 • September 2010

you just want to find out more about the project and hepatitis C, you can visit www.chistudy. org.au for information. As the study organisers say, “Please be sure to let your experience count and let us know about how hepatitis C has affected you.” Expected Outcomes The research will provide information about the long-term physical and social experiences of life after a diagnosis of hepatitis C infection. The results of the study will inform the development of appropriate health policy, and provision of education, treatment, and support services for people affected by hepatitis C. ARCSHS will provide summaries of the findings and copies of all formal reports of the project at regular intervals on the CHI Study website. The results of this project will also be disseminated through publications and presentations at conferences. What’s involved? Should you choose to be involved in the study, the first questionnaire will take between 20 and 45 minutes to complete online, depending on how many of the questions are relevant to you. ARCSHS will then contact you by email and ask you to complete another questionnaire. Most people will be contacted in 6 months, but if you have just been diagnosed with hepatitis C or are being treated, they will contact you in 3 months to complete a questionnaire. The follow-up surveys are shorter

than the first one, and should not take more than 15 minutes to complete. If you provide an email address, ARCSHS can remind you every three to six months to complete another survey at the website, but for most participants the reminders will be six-monthly. With your permission, the study organisers will continue to contact you on a regular basis so that you can update them on how you are going and if things have changed since you were last contacted. It is intended that the study will be running for a few years or more, but you can easily stop participating at any stage by clicking on a ‘withdrawal’ link, and ARCSHS will stop sending you any reminders as soon as you do so. Confidentiality is extremely important in this study. The information you provide will be stored electronically in a password-secured file. Only researchers immediately involved in the study will have access to the information provided in the surveys. While ARCSHS request your email address, it forms part of the automatic reminder system only, and is not linked to any information you provide. Questions will cover some of the following topics: • How you live (housing, education, financial situation) • Your health, how you were diagnosed with hepatitis C, and how your health has been affected (or not) by hepatitis C

treatment (both medical and complementary treatments) • How hepatitis C affects, or does not, your everyday life—your work or study, your social relationships and your lifestyle You do not have to answer any questions that make you feel uncomfortable. Participation is voluntary. Even if you start participating in the study, you can stop at any time. Your decision to be involved or not will not disadvantage any care you will receive from any health service or clinic. Should you agree to participate, you will be asked to carefully read the information provided on the website and confirm your voluntary participation by checking the acknowledgement box. It is important that you understand the aims of the research before you tick the box. Your participation in this research is greatly appreciated and the information you provide will help other people with hepatitis C. The Hepatitis C Council of South Australia strongly supports this research, and we believe it will be extremely valuable in promoting the interests of people living with hepatitis C. Any questions regarding the project can be directed to the Research Fellow, Dr Emma Miller, at the Australian Research Centre in Sex, Health and Society on (03) 9285 5353, or to the Head Researcher, Dr Stephen McNally, also at ARCSHS, on (03) 9285 5246. Visit www.chistudy.org.au for information.

• Your history, or intentions of accessing hepatitis C Hepatitis C Community News September 2010 • 9

James Nash House

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ames Nash House, named after a Nineteenth-Century Adelaide doctor (see sidebar) is at the centre of South Australia’s treatment of forensic patients. Forensic patients are people who have been charged with criminal offences, but who have either been found not guilty due to mental impairment at the time of the offence, or else found to be unfit to plead at a trial.

at the time the offence took place. Every charge is treated separately, and it is entirely possible to be found not guilty due to mental impairment on one charge, while being found guilty on another.

For the purposes of SA’s criminal justice system, mental impairment includes mental illness, intellectual disability, or dementia. However, to plead not guilty in these circumstances it is not enough to suffer from one of these problems. It must be proved that the impairment was a significant problem

House there is a very high rate of hepatitis C positivity—anecdotal evidence perhaps as high as 90%. It is important to know of a patient’s HCV status, as there may be dangerous interactions between the virus and psychiatric medication. It is also important for ensuring the patient’s general health and well-being.

Hepatitis C Community News 10 • September 2010

The way the criminal justice and mental health systems work in South Australia are very relevant for people living with hepatitis C. At James Nash

Because of this, hepatitis C education is very valuable to forensic patients, and the Hepatitis C Council and the Forensic Mental Health Service have started to work together to improve HCV education for, and access to, the patients at James Nash House and in the community. At the moment there are around 200 forensic patients under

the auspices of the Forensic Mental Health Service in SA. Most of these people live in the community under various conditions—their licence conditions. Only 40 people live in James Nash House. When a defendant claims the mental incompetence defence, or is thought to be unfit to stand

trial, psychiatric reports are required. Once a psychiatrist’s report is returned which supports the defence or lack of fitness, the defendant is then declared liable to supervision. They are either committed to James Nash house, or else set various licence conditions. These conditions apply for a period of time known as a limiting term, equivalent in duration to the amount of time which would ordinarily be served by someone found guilty of the offence. The limiting term cannot be shortened or lengthened later. Someone may have a number of limiting terms running concurrently for a number of offences, or even be technically serving jail time for a different offence for which they were found guilty. Licence conditions are basically the rules by which a forensic patient must abide during the limiting term. They state what the expectations of the client are. These conditions may change over time. These conditions and the patients are overseen by Forensic Mental Health Services and Community Corrections. If the conditions are not followed, the patient may be breached by the courts. A forensic patient can apply to the courts to have the conditions varied or revoked. James Nash House itself is a secure hospital for both forensic patients and Department for Correctional Services (DCS)remanded clients (jail prisoners who need secure hospitalisation for mental health issues), with 40 beds. At the time of writing there were 32 forensic patients (continued over page)

Doctor James George Nash (1805-1880) was the second Colonial Surgeon of South Australia. After graduating in London in 1827, he held the position until 1857. Dr Nash was involved in highlighting the plight of paupers in the Adelaide Gaol. Dr Nash and the first ‘Keeper’ of Adelaide Gaol, Mr Ashton, helped to move the ‘unfortunate’ to the Adelaide Infirmary. In 1838 Dr Nash was appointed a member of the board of the infirmary. In 1849, Dr Nash became responsible for the management of the ‘North Terrace Lunatic Asylum’. The news article reproduced here, from the South Australian Advertiser, Friday, 13 November 1868, shows some of the parliamentary debate over the Asylum’s construction. At this time, Nash lived on-site. Hepatitis C Community News September 2010 • 11

(from previous page)

and 8 DCS prisoners there. As you can see, there could easily be a shortage of beds, and indeed James Nash House has a waiting list of about 20 people at the moment. Forensic patients are not legally supposed to be allowed to go to prison, but space shortages mean that the current state government has allowed itself an exemption, whereby the relevant Minister can have forensic patients sent to jail. The patients in James Nash House are usually either sent there by the courts, for assessment, or else have been found to have breached their licence conditions. Most forensic patients have a major mental illness, such as schizophrenia, depression, mania, anxiety or a severe personality disorder. Recovery and rehabilitation is the hospital’s focus, maintaining a balance of therapy and security. James Nash House has four wards (one of them located offsite at Glenside):

Aldgate Ward is an acute ward. Every inmate comes through this ward: they are admitted, showered and searched, and placed under observation. There are 8 beds, and the patients are of both genders. The ward is a low-stimulus environment, with high levels of patient observation by the staff. Birdwood Ward is a subacute ward. It has 14 beds, with patients of both genders. They have access to a range of hospital programs, a gym, and the occupational therapy room (which allows art projects, and cooking, among other things). Clare Ward is for longterm rehabilitation and deinstitutionalisation. It has 8 beds, for men only, and consists of hostel-style accommodation. The focus for the patients is on reintegration into the outside world. Grove Closed Ward is located at Glenside. It has 10 beds, with patients of both genders. Patients are often rehabilitated here to be moved to other

Glenside wards or else back into the community. Unlike DCS clients, who pay no rent but have no access to welfare payments or other government benefits, forensic patients may still receive these payments. However, they have limited access to the funds, with weekly purchases and threemonthly buying trips. They must also pay a small amount of rent while they stay in James Nash House. James Nash House fills a vital role in the justice system. As Ross, one of the staff at James Nash House, says, “At James Nash, the patients are probably the ‘wellest’ they’ve ever been. They’re taking their medication, are away from illegal drugs, they’re being looked after, they have structure to their lives.” He relates a typical story about the mother of one patient who was very grateful for her son’s improvement there. “It’s just a pity he had to commit a crime to finally get this sort of help,” she said.

Treatment Success Test

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ictorian gastroenterologist Dr Paul Froomes and microbiologist Dr Volker Gurtler have developed a new test for assessing patient response to current treatment for Hepatitis C. After the discovery of a significant polymorphic gene, labelled rs12979860, in Switzerland and the United States, Dr Froomes approached Volker nine months ago with the task of devising a test for the gene.

Hepatitis C Community News 12 • September 2010

The significance of the work is the increase in reliability of treatment for Hepatitis C patients with the polymorphic gene. “It means patients do not need to be tested so frequently, that pathology care for patients is much more simplified, and that the cost of testing is reduced,” said Dr Gurtler. Dr Froomes and Dr Gurtler found that if a patient had the polymorphism, then their response rate was much better, about 70-80%, compared to

someone who did not have the polymorphism (who had a much lower response rate of 20%). Dr Gurtler was given the challenging task of modifying the DNA sequence specific for the mutated gene. Dr Gurtler and his pathology team at Austin Health spent six months developing and validating the genetic test for the gene, although, as he pointed out “it’s been 20 years coming”.

Seventy-five Percent The latest promising news on telaprevir

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elaprevir, also known as VX-950 (co-developed by pharmaceutical companies Vertex and Johnson & Johnson), is an extremely promising experimental treatment for hepatitis C genotype 1. It is a protease inhibitor. Specifically, it inhibits the hepatitis C virus NS3.4A serine protease. In a randomized controlled trial of patients in whom standard treatment with peginterferon alfa-2a and ribavirin had

failed, repeat treatment with the addition of telaprevir was more likely to have a sustained response than repeat treatment with peginterferon alfa-2a and ribavirin alone. This means that telaprevir is the first hepatitis C drug currently in development that has demonstrated activity in patients who have failed prior therapy. Now in Phase III clinical trials in the US, telaprevir will next go to the American FDA for approval. This looks likely to be given, since the trials so far show that it can cure up to 75% of HCV infections. How does telaprevir treatment work? It is added to the current

standard combination therapy. As Nicole Cutler of Hepatitis Central in the US says, “experts have been predicting for a while that pegylated interferon and ribavirin need a third medication to increase the chance for curing hepatitis C … the long wait for an improved Hepatitis C treatment could finally be right around the corner.”

of previously untreated naïve patients with HCV genotype 1 achieved a cure. Ira Jacobson, Chief of the Division of Gastroenterology and Hepatology at Weill Cornell Medical College, and one of the researchers involved in the trial, said that “These results confirm findings seen in

The most recent telaprevir tests results showed that

when 12 weeks of dosing with telaprevir, pegylated interferon and ribavirin was followed by another 12 weeks of just pegylated interferon and ribavirin, 75% of previously untreated patients with HCV genotype 1 achieved a cure. After only 8 weeks of dosing with telaprevir, pegylated interferon and ribavirin, followed by another 16 weeks of just pegylated interferon and ribavirin, 69% of previously untreated patients with HCV genotype 1 were cured. Compare this with the control group, where after 48 weeks of treatment with pegylated interferon and ribavirin, 44%

earlier trials of telaprevir and highlight that telaprevir-based combination regimens may increase viral eradication rates and shorten treatment time for many patients.” It is expected that telaprevir will be introduced into Australia within the next two years. See www.hivandhepatitis.com/ hep_c/news/2010/0608_2010_ a.html for further details of the research.

Above: the chemical structure of the telaprevir protease inhibitor Hepatitis C Community News September 2010 • 13

MAKE E A NOISE! E

Promises & Power The 2010 Election and Hepatitis Health Policy

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he result of the 2010 federal election has left the parliament in an unusual position, with no party holding a majority. Before the election, Hepatitis Australia sent the Labor Party, the Liberal/ National Coalition, and the Greens Party a list of what they feel are urgent priorities for action. 1. Identify and allocate dedicated funding to support the full implementation of the First National Hepatitis B Strategy. This should include additional funds to the national research centres and community organisations to facilitate their full participation in the roll out of the strategy. 2. Deliver a major mass media social marketing campaign to educate the broader Australian community about viral hepatitis. 3. Fund and establish community- based viral hepatitis treatment centres in areas of high need to facilitate an increase in treatment uptake. 4. Fund improved access to sterile injecting equipment, particularly out-of-hours, and in areas of high need 5. Provide incentives to States and Territory governments to instigate a prison needle

exchange trial in each jurisdiction. They then asked each of the parties two questions. 1. Will your party commit to improving the lives of people living in Australia, with, or at risk of, chronic viral hepatitis, by addressing each of the urgent priorities for the Federal Government identified above? 2. If so, what funding will you investigate and allocate to ensure that each of these priorities can actually be addressed; acknowledging that current funding is insufficient to make real gains on each of these issues? These are the responses.

Labor “The Gillard Labor Government is committed to supporting improved prevention and treatment of viral hepatitis. “Federal Labor established a new Ministerial Advisory Committee on Blood Borne Viruses and Sexually Transmissible Infections in 2009. We have also worked in partnership with community stakeholders and States and Territories on new national strategies for sexually

Hepatitis C Community News Photo Aerokev 2010 (www.flickr.com/photos/aerokev/) 14 • ©September

transmissible infections and blood borne viruses, including National Strategies for Hepatitis B and Hepatitis C. “The Gillard Labor Government has invested in Hepatitis B and C awareness promotion, prevention and treatment programs, and recognises the importance of ensuring that this important work continues. “Federal Labor’s investments have included: • $7.1 million in 2009-10 to the Hepatitis B Vaccination Program and the Adolescent Hepatitis B Catch-up Program • $12 million in 2009-10 for research into Hepatitis B and C, through the National Health & Medical Research Council • the development of education, prevention and awareness projects through around $850,000 to Hepatitis Australia, around $855,000 for the Australian Injecting and Illicit Drug Users League, and $480,000 to the Australasian Society for HIV Medicine. “In addition, under the National Healthcare Agreements, Federal Labor provides substantial funding to States

The Coalition “The Coalition commends your organisation’s keenness and dedication to promoting good health in the Australian community and in particular to raising awareness of Hepatitis. When last in government Tony Abbott, the then Minister for Health and Ageing, launched the first Hepatitis Awareness Week in May 2005. “The Coalition remains committed to improving the lives of those infected with Hepatitis.[...] The Coalition has a range of policies to improve health outcomes in Australia. These will also be of significant benefit to those with Hepatitis. “First, the Coalition will develop a communitycontrolled public hospital system by transferring managerial decision making from centralised bureaucracies to community boards. This will give doctors and nurses better opportunities to manage their hospitals to suit local conditions.Hospitals could therefore become better geared to treat diseases that are more prevalent in their local community. “Over four years, the Coalition will directly fund 2,800

new public hospital beds to relieve pressure on our public hospitals. The Coalition will commit $3.1 billion to this measure. “The Coalition will provide $200 million over four years for health and medical Research. “The Coalition will develop existing family GP practices by providing $200 million for grants to existing GP practices to develop infrastructure for training and teaching rooms, accommodating additional doctors, expansion of integrated allied health services and multidisciplinary care and extension of after-hours opening times. “The Coalition will invest $165 million to increase after-hours Medicare rebates and retain and strengthen the After Hours Practice Incentive Payment. “Finally, the Coalition will support family GPs to provide better chronic and complex care. We will commit $350 million to increase Medicare rebates for longer consultations.”

The Greens In response to priority 1: “The Greens have called for more funding to be made available for health research and clinical trials. The Greens believe that the National Health and Medical Research Council (NHMRC) should be given sufficient funding to sustain the necessary investment in knowledge and research that will be required as Australia embarks on a period of change in its health system. The Greens want to move the delivery of care from a sickness system to a wellness system and believe that research will play a pivotal role in this process.”

In response to priority 2: “The Greens would support a mass media campaign to educate Australians about viral hepatitis. Our hospital system is clearly overburdened and in crisis. The evidence that our health policies should focus on keeping people well, preventing illness or better managing their illness in the community is overwhelming. The Greens’ National Healthcare Plan is focused on early intervention, prevention and keeping people well.” In response to priority 3: “The Greens would like to see more care being provided in the community where it can be more effective, easier to access and more efficient than acute care provision.” In response to priority 4: “The Greens would welcome this initiative and would like to see further details, including costings, of your proposal.” In response to priority 5: “The Greens would like to see more transparency in the National Health Partnership agreements and believe that proper incentives be they increases in funding or penalties for underperforming to agreed targets should be in place.” And in summary, “The Greens will ask the government to commission a cost-benefit analysis of the initiatives outlined in this proposal and table before Parliament within 12 months of the first day of sitting of the new Parliament.”

MAKE E A NOISE! E

and Territories for education, counselling and referral services provided through needle and syringe programs, on top of substantial funding for treatment through Medicare and the Pharmaceutical Benefits Scheme. “Should it be re-elected, the Gillard Labor Government looks forward to working in partnership with stakeholders to implement the National Strategies for Hepatitis B and Hepatitis C.”

We look forward to the government and the balanceof-power parties fulfilling these promises, and fully support Hepatitis Australia as they continue to campaign for federal government action. Hepatitis C Community News September 2010 • 15

C-Pix: The Shimmer Festival

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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.

Hepatitis C Community News 16 • September 2010

he artworks from HCCSA’s C-Pix Project have been featured in the Onkaparinga’s first photography festival, called the Shimmer Festival, which ran from August 16-29. The provocative photo essays about hepatitis C and risk were exhibited in the Noarlunga Library during the festival, where they were viewed by many people visiting the library, TAFE and Colonnades shopping complex. Shimmer is about celebrating South Australian photography and photographers, and included the work of SA’s photographers Gavin Blake and Nici Cumpston. The festival hosted artists’ talks as well as workshops on digital photography, how to get the best out of your digital camera, and the conservation of precious and historic photographs. “We are proud to present this inaugural festival, which we believe is a unique event for South Australia,” stated Onkaparinga City Council’s Team Leader for Arts and Cultural Development John McFadyen, who explained that “Shimmer takes photography out into the community and will provide inspiration and practical hints and tips to the budding photographers”. Congratulations to our budding C-Pix photographers for their great work that has now been viewed in Adelaide, the Riverland and now Onkaparringa. The C Pix exhibition can also be viewed online at www. hepccouncilsa.asn.au. Maggie McCabe

Useful Contacts & Community Links Hepatitis C Council of SA

Clean Needle Programs

Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. Call the Council’s Info and Support Line for information on 1300 437 222 (for the cost of a local call anywhere in SA).

To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340

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

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

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

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

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.

Jack makes use of the hepatitis C Council’s library to find out more about hep c...

! ck knok nock!

i wish my g.p. had known this stuff!

come in, I was just reading...

what the..z

Hi! I’m oliver!

SA Health has contributed funds towards this Program.

#49 • September 2010