The Hep Review Autumn
March 2010
Edition 68
Hep C and men: the issues for everyone A new decade of hep C transmission and prevention US ends needle program funding ban Telaprevir nearer to US FDA approval You could soon be drinking healthy alcohol The Hep Review Edition 68 March 2010 Hepatitis Awareness Week 2010
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editor’s intro
a keyhole to our work
Hello readers
Hepatitis NSW work in correctional
Another magazine rolls around and in this edition we take a look at how hep C affects men and we explore what the new decade holds for prevention of hep C transmission. We hope you enjoy these commissioned pieces and don’t forget to let us know if you have ideas for such articles. In this edition, we carry three letters from readers. It’s great to see you writing in with your thoughts so please keep the letters coming! Other items I particularly like include news on US needle programs funding, a US national strategy, the new treatment telaprevir, and a call for Australian NSP to run out of convenience stores! Also look for articles on Awareness Week 2010 and NSP in prisons. There’s research news on hep B, the benefits of coffee, a newly discovered natural compound that could help fight hep C, vitamin D and hep C treatment, and the factors that could make your hep C outcome worse: insulin resistance and metabolic syndrome (diabetes type 2). We also have a news item on the tragic death of someone who was on hep C treatment. I am on a protease inhibitor (and combination treatment trial) and reading this article had a particular impact on me. It’s the sort of news that we need to carry if we are to provide a balanced picture of hep C treatment but I want to stress that such cases are very rare. Treatment can be rough but most people complete their treatment and clear their virus. Please don’t let this article put you off treatment; instead, let it emphasise the importance of being honest with your treatment team and allowing them to care for you as effectively as possible. •
Ed.
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risons can be a challenging environment to access, and we work strategically to maximise our access to prisoners and staff.
We work in partnership with Corrective Services NSW to provide workforce development for their staff. We contributed substantially to the development of communicable disease training as part of their worker’s Integrated Induction Course. In addition to running education sessions for new recruits when requested, we run workshops for current Corrective Services staff in metropolitan and regional correctional centres. There has been on-going discussion with Corrective Services about creating an e-learning communicable disease training package for staff, opening up access and providing communicable disease information to all their staff. Collaboration has also occurred with Juvenile Justice staff running hep C youth arts projects in Juvenile Justice centres and we hope to expand this work with them. We run the Prisons Hepatitis Helpline where NSW prisoners have free phone access to our Helpline staff. We also distribute information resources to people in prisons and other corrective settings. We send approximately 8,700 copies of each edition of our Transmission Magazine into prisons, Justice Health clinics and Juvenile Justice centres. We also distribute 3,200 copies of each edition of this magazine, The Hep Review, in these centres. We have found that strong partnerships with key people in Corrective Services, Juvenile Justice and Justice Health facilitate our access to people in prisons and other corrective services.
Weblink of the month
Our weblink of the month is http://bloodborneviruses.org.au/ This website is all about bloodborne viruses. It is for healthcare workers, managers responsible for healthcare worker safety, quality improvement staff and the community at large.
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
2 www.hep.org.au
Cover pic by Thomas Hawk, courtesy of flickr.com
acknowledgements settings
Editor/design/production: Paul Harvey
We are represented on numerous committees and working groups and are finalising a MOU with Justice Health. We advocate for needle and syringe programs in NSW prisons in order to reduce the suspected high incidence of hep C on the inside, and for the expansion of harm reduction and hepatitis care, treatment and support services inside adult and juvenile correctional settings. Any discussion about our work in prisons inevitably raises questions about the nature and purpose of prisons, the shocking rates of incarceration for Aboriginal people and those with mental health problems or drug dependencies, and the challenges we face as public health advocates for people in prison settings. •
Hepatitis NSW
Editorial committee: Tim Baxter Megan Gayford Paul Harvey Thuy Van Hoang Stuart Loveday Rachel Stanton Gideon Warhaft Scott West The HR medical and research advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Yvonne Cossart, A/Prof Greg Dore Prof Geoff Farrell, Prof Geoff McCaughan Mr Tadgh McMahon, Dr Cathy Pell Ms Ses Salmond, A/Prof Carla Treloar Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Prue Astill Chris Audet Samantha Edmonds Margaret Hancock Gerard Newman Adrian Rigg Cindy Tucker Comic: Andrew Marlton Contact The Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au
Seeking your story Personal stories provide a good balance to our information articles. Please consider writing in with your story. Published articles attract a $50 payment.
text/mobile 0404 440 103 post The Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney
Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.
Seeking your ideas We want The Hep Review to remain relevant to you. If you have any ideas we can use as topics for our commissioned articles (e.g. see page 20), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’. Just phone and ask for Paul, or email pharvey@hep.org.au or text us on 0404 440 103.
Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation. We are funded by NSW Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to The Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided The Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. Flickr). Their images are used for illustrative purposes only and they have no connection to hep C.
The Hep Review Edition 68 March 2010 3
contents Letters In prison, in recovery 5 Tuesday nights alright 5 Putting my mind at ease 6 News US ends needle program funding ban 6 US national hep B and C report 7 Telaprevir nearer to FDA approval 7 Hep B threatens Peruvian tribe 8 You could soon be drinking healthy alcohol 8 UK hep C trouble on the increase 9 Viral hepatitis hits international stage 9 Hep C treatment declining in the US 9 Direct antivirals without interferon 10 Hanoi moves forward with methadone 10 Hamas approves dealer death penalty law 10 First person receives antibody to hep C 11 Hank Johnson talks about his hep C 11 CSIRO invests A$2m in Avexa 12 Aiming for convenience with syringe supply 12 Hep C treatment man jumps to his death 13 Most hep C goes untreated 13 Government warned about deportee’s poor health 14 Australian couple flee to treat daughter’s liver cancer 14 Features Awareness Week 2010 17 Applauding and valuing Australia’s needle and syringe program 18 Hep C and men: the issues for everyone 20 Obituary: Roland S. Howard 23 A new decade of hep C transmission and prevention 24 The needle and the damage done 32 Obituary: Stuart M. Kaminsky 35 Social determinants of health: diet and food 36 All you need 2 do is ask: don’t cuff yourself 38 Raising awareness about liver cancer in south western Sydney 44 My story Jim’s story: light on the other side 16 Roger’s story: my B and D double whammy 42 Opinion Injectable heroin more effective than oral methadone 40
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Promotions Sydney Central support group update for 2010 19 St Vincent’s Hospital viral hepatitis clinic trials 19 HALC legal centre 41 Hep C bookmarks 46 Website promo 46 Transmission Magazine 47 Sydney Central support group 47 Hep Connect 53 Paediatric viral hepatitis clinic 58 Research updates Coffee good for people with hep C related cirrhosis 48 The impact of hep B in Australia 48 Recovery from hep C treatments 49 Vitamin D has benefits in chronic hep C 49 Metabolic syndrome hikes hep C mortality 50 Hep C education and support in Australian prisons 50 How hep C remains in the body 50 Hep C drug fights virus in new way 51 Hep C in Aussie kids goes undetected 51 Soft drinks cause liver damage 51 Why hep B hits men harder than women 52 Viral load predicts liver transplant outcome 52 Survival lower in women after hep C liver transplant 52 Assessing community support for harm reduction services 53 Regular features A keyhole to our work – Hepatitis NSW work in correctional settings 2 Resource of the month – Hep C and Food 7 Q&A – Can combination treatment help prior to liver transplant? 15 Hello Hepatitis Helpline – Hep B diagnosis 29 Harm reduction poster – Arteries (part 2) 30 The little book of hep B facts 43 Membership matters 45 A historical perspective (from March 1994) 45 Interferon-based treatment 54 Complementary medicine 55 Support and information services 56 Noticeboard 58 Do you want to help us? 58 Upcoming events 58 Complaints 58 Membership form / renewal / tax invoice 59
letters In prison, in recovery
Tuesday nights alright
Since working at Narcotics Anonymous, I feel free even though I am behind bars. Your magazine is very interesting and reminds me that I can do something about this disease.
I want to say thank you to the team running the Sydney Central support groups at your office, Tuesday nights, once each month.
My overall aim during my sentence is to pay my debt to society. I’m involving myself in the Restorative Justice Program which gives me the chance to meet my victims and say sorry to them. Hopefully, this opportunity can mend some of the damage I caused in my active dependence. I am also studying to become a Drug & Alcohol counsellor. Believe me, with 20 years of active dependence behind me I have a firm foundation in recovery. I also have the experience to help those who choose to live a life that is clean and sober, hopefully enabling them to fulfil their dreams. That’s about my life up-to-date. Even though I am 34 years old my life has been full of crime and punishment. I thank you for reading my letter and I pray that all of you in active dependence get to take one day at a time in recovery.
I recently completed another shot at treatment. My recent PCR shows that I have cleared the virus. Unfortunately, I still have feelings of fatigue which are still being investigated, and I am still encountering stigma related responses from people: alarm bells ring. I visit new specialists and feel uncomfortable with their discomfort in treating people who appear to have the label stuck on their forehead: ex-drug user, cannot be trusted. For God’s sake; I am 51 years of age. I am no longer that young 16 year old who made the mistake of using drugs when I did. Don’t get me wrong, most of the medicos are fantastic, but some have a barrier that makes the difference between a professional and a great professional.
My prayer :
What the support group has given me is a sanctuary to come, sit and listen, experience riba rage in the group, start to see familiar faces and just get that instant acknowledgement that it is okay. These are things I find hard to get from some of the other people around me daily.
God trust me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
The support groups were beneficial in my process of treatment. They were also a way to gauge how I was travelling emotionally and cognitively during the process. I may not have got everything I wanted by going along, but I got what I needed.
Just for today.
If anyone is thinking of going on treatment, has been on treatment or would like to lend support to those on treatment, the Central Sydney support group is for you. It may provide an opportunity to find out more or to give back to others with hep C: some who have just found out about it and others who have endured it for a long part of their life.
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Rick, NSW
Thank you Tuesday support group. •
Chris, NSW
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Putting my mind at ease I have been a regular reader of The Hep Review, for over a decade. It has kept me up-to-date and well informed. Often times more informed than my GP, and sometimes more than my specialist.
Image courtesy of Google Images
letters news
A few months ago I read about the new monitoring device in Australia: FibroScan. Having hosted the virus for about 33 years, and undergone pegylated interferon treatment about 11 years ago, I’ve had several biopsies. I was thrilled to hear about this new examination device. So much so, I was ready to hop on a plane and fly to Sydney.
US ends needle program funding ban
I discovered that there is a machine here in Queensland at the Greenslopes Private Hospital. It has been several years since my last biopsy, and I was due for one, but instead booked an appointment with Dr Crawford, and had my first FibroScan.
The repeal is “a big victory for science and for public health,” said House Speaker (Democrat for San Francisco) Nancy Pelosi, who helped push the measure to passage.
It was so quick and easy, kind of like a computerised ultrasound, which showed the amount of fibrosis. Man, was I happy and relieved to hear the immediate results. A normal liver would have a reading of about 5, a cirrhosis liver would be 13+. Mine was a 6.8, which indicates minimal fibrosis. So compared to my last biopsy the test suggests little change over time. Unfortunately the test costs $250 out of pocket. However the doctor says they are lobbying to get it passed, and hopefully in 18 months it will have a Medicare claim number. It will be a great way to monitor our livers. I chalk my condition up to a positive attitude, plenty of exercise, a healthy diet, moderate alcohol intake, and supplements. I wish good health to all of you. • Marty, QLD NB: These tests are carried out for free in certain NSW hospitals. Check out ED65, page 24 for more information on fibroscan. Ed.
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USA – Congress and President Obama have repealed a ban on federal funding for local programs that supply clean needles to drug users.
The new law will make federal grants available for local needle-exchange programs that now exist in nearly every state, funded by state and local governments and private contributions. Obama had sent mixed messages on needle programs. He endorsed federal funding as a presidential candidate, but his proposed 2009-10 budget continued the 21-year-old funding ban, even as his drug advisor, Gil Kerlikowske, was publicly supporting needle exchanges. House Democratic leaders waged a lowkey campaign to repeal the ban this year. A Republican proposal to continue the funding prohibition was defeated on the House floor in July on a 218-211 vote, mostly along party lines. A House-Senate conference committee later removed a Republican-sponsored amendment that would have barred federal funding to any program that operates within 1,000 feet of a school, park or day care center. • By Bob Egelko. Abridged from http://tinyurl. com/y9jtrkh (18 Dec 2009).
news promotions US national hep B Telaprevir nearer to and C report FDA approval USA – Despite federal, state and local public health efforts to prevent and control hep B and hep C, these diseases remain serious health problems in the United States. The Centres for Disease Control and Prevention in conjunction with various federal government departments and the National Viral Hepatitis Roundtable, sought guidance from the Institute of Medicine in identifying missed opportunities related to prevention and control of the diseases. The Institute of Medicine was given a brief to determine ways to reduce future HBV and HCV infections and the morbidity and mortality related to chronic viral hepatitis. They were also asked to assess current prevention and control activities, and identify priorities for research, policy and action. They also highlighted opportunities for collaboration between private and public sectors.
USA – Vertex Pharmaceuticals tackles some of the world’s most difficult-to-treat diseases. They plan to soon to submit telaprevir to the US FDA for treating hep C among people who have failed prior treatments. Analysts see telaprevir as a potential blockbuster because roughly 650,000 of the 3.2 million Americans living with hep C have failed standard therapies. Results involving patients who had failed to respond to standard combination treatment or relapsed after taking the standard treatment, achieved 57% and 90% cure rates, respectively, with the additional new drug. • Abridged from http://tinyurl.com/yan2g7v (23 Nov 2009).
• Abridged from the report, downloadable from http://tinyurl.com/yd7u2lk
It is believed that telaprevir triple combination treatment will become available in Australia sometime after 2012. Ed.
Hepatitis C and Food Make the simple changes that can help lessen long-term liver damage
Phone the Hepatitis Helpline to order your free copies 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers)
The Hep Review Edition 68 March 2010 7
news Hep B threatens Peruvian tribe Peru – The Candoshi tribe in Peru’s Amazon region has said their existence is threatened by a hep B outbreak that began almost two decades ago. A health emergency has now been declared in the area to tackle the epidemic. Venancio Ucama Simon, the head of the tribe, said his people began contracting the disease around 1990 and members are dying because they have not received treatment. “My people are suffering, we’re in real danger of extinction,” he said. Gianina Lucana, a Candoshi nurse working for the World Wildlife Fund (WWF), said that “so far, 80 people have died from hep B since 2000” in her region. She said the disease broke out when Occidental Petroleum Corporation was granted exploration rights in the remote northern Datem del Maranon Province. “The latest statistics, in 2000, suggested there were 169 cases with the Candoshi population estimated to number 2,400 people. From that time, however, things have deteriorated badly. There have been lots of deaths from hep B, but it’s been impossible to determine exactly how many deaths because of lack of medical attention,” Lucana said. A health emergency was declared in the area after Ucama and members of his tribe travelled to the capital, Lima, to draw attention to their case. “We will guarantee permanent human and economic resources to launch a massive inoculation drive against that disease,” Oscar Ugarte, Peru’s health minister, said. Ucama said that federal and local health authorities were trading blame for the plight of the Candoshi and citing the high cost of hep B treatment as a reason for the inattention. • Abridged from http://tinyurl.com/yj6d3rn (2 Dec 2009)
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You could soon be drinking healthy alcohol UK – A substance said to give the feeling of booze without the health risks is being developed by controversial ex-Government drugs advisor Professor David Nutt. The solution is added to liquid. It is claimed anyone using it will get the alcohol high without the hangover or liver damage. There is even an antidote which would allow a user to drive home after taking it. The potential for this is enormous. It could slash Britain’s binge drinking epidemic, which currently costs the NHS £3billion a year, reducing the number of deaths from alcohol poisoning. “We have been poisoning ourselves for 2,000 years. We now have the knowledge to make a far superior synthetic alcohol,” Professor Nutt said. “We have worked out how alcohol affects the brain and can target these areas. We have a partial alternative tested on volunteers. With Government backing, the first ever synthetic alcohol could be available in three to five years.” But the project will be hard to progress. There is little external interest, perhaps because people think this idea is too radical and alcohol manufacturers would probably protest. Selling the substance would be difficult because it would be classified as a drug and would fall foul of drug laws. This is why Professor Nutt is calling for Government support. • By Professor David Nutt. Abridged from http://tinyurl.com/yjgbtzm (10 Nov 2009).
UK hep C trouble on the increase
news Hep C treatment declining in the US
UK – Figures from the UK Health Protection Agency’s yearly report on hep C for 2009 showed that laboratory reporting of newly diagnosed cases in England increased in 2008 by 6% compared to 2007.
USA – Researchers from the University of Michigan determined that only 663,000 of the approximately 3.9 million Americans with hep C (17%) received antiviral therapy between 2002 and 2007.
Predictions from the HPA indicate that the future burden of this disease on the health service will be substantial if awareness, diagnosis and treatment do not increase. This can already be seen in national mortality figures, hospital admissions and transplant data, which all show that hep C related serious liver disease is continuing to increase year-on-year.
Treatment rates appear to be declining, in part because only half of the patients know they are infected. If this disturbing trend continues, by 2030 less than 15% of liver-related deaths from HCV will be prevented by antiviral therapy. This study, the first to analyse nationwide practice patterns for hep C treatment, is published in the December issue of Hepatology.
• Abridged from http://tinyurl.com/ybf8daw (11 Dec 2009).
Dr Michael Volk and colleagues obtained data of new patient prescriptions for combination treatment between 2002-2007. Results of the prescription audit showed there were 126,000 new prescriptions for pegylated interferon products in 2002 and by 2007 that figured declined to 83,000 prescriptions.
Viral hepatitis hits international stage UK – The World Health Organisation Executive Board will recommend a resolution on viral hepatitis to the World Health Assembly in May. If adopted, the resolution would for the first time provide a framework for international action to prevent, diagnose and treat hepatitis B and C. In addition, the resolution would provide global support for an official World Hepatitis Day (19 May) to provide a focus for national and international awareness-raising efforts. “The adoption of the resolution by the World Health Assembly in May will be a clear statement that viral hepatitis now has the same priority as the other major world diseases” said Charles Gore, President of the World Hepatitis Alliance. The 63rd World Health Assembly will take place in Geneva from 17 May until 21 May, 2010. • Abridged from Hepatitis Australia correspondence (3 Feb 2010). For more information on World Hepatitis Day and Australia’s national Hepatitis Awareness Week, see page 17. Ed.
To further understand the decrease in antiviral therapy, researchers investigated treatment decisions. They discovered that 49% of respondents were previously unaware of their diagnosis and 24% of people with hep C were not recommended for treatment by their doctor. Approximately 9% of those surveyed did not follow up with their doctors regarding their hep C, 8% refused treatment, and only 12% received treatment. “It is concerning that half of all people with hep C in the US are unaware of their diagnosis. Even with the development of new and better medications on the horizon, such medications will have less than optimal impact unless more patients are diagnosed and referred for treatment,” said Dr Volk. The authors conclude that increased public health efforts are needed to improve access to antiviral therapy, and recommend further research of health services delivery and quality of care for HCV patients. • Abridged from http://tinyurl.com/yechub7 (24 Nov 2009).
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news Direct antivirals without interferon NZ – The first clinical trial of direct antiviral drugs against hep C without combination treatment was a success, researchers said. A combination of two investigational antivirals, one an HCV protease inhibitor and the other targeting the HCV polymerase, led to dramatic reductions in viral loads during a 13-day pilot trial, according to Dr Edward Gane, of Auckland Clinical Studies in Auckland, New Zealand, where the study took place. The drugs’ lead developer, Roche, announced that Phase II testing would begin in early 2010. • By John Gever. Abridged from http://tinyurl. com/y985d6g (5 Nov 2009). Also see New directions in hep C therapy, ED64, page 42. Ed
Hanoi moves forward with methadone Vietnam – Hanoi will launch its first project to treat drug dependence with methadone, according to Le Nhan Tuan, director of the city’s HIV/AIDS prevention centre. The pilot program will begin at Tu Liem District and be expanded to another four. It is estimated that 20,133 people are living with HIV/AIDS in the capital, Tuan said. Medical literature says that people remain physically dependent on methadone, but are freed from the uncontrolled, compulsive, and disruptive behaviour seen in heroin users. Vietnam first introduced methadone in 2007 with pilot projects in Ho Chi Minh City and the northern port city of Hai Phong. • Abridged from http://tinyurl.com/yehhm6d (30 Nov 2009).
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Hamas approves dealer death penalty law Palestine (Gaza Strip) – The Islamist Hamasrun government ruling Gaza has approved a legal change that will allow for the execution of convicted drug dealers, its attorney general said. “The government has approved a decision to cancel the Zionist (Israeli) military law with regard to drugs and enact Egyptian law 19 of 1962,” Mohammed Abed, the attorney general, said in a statement. “The latter law is more comprehensive in terms of crime and criminals and the penalties more advanced, including life sentences and execution.” Egypt administered the Gaza Strip from 1948 until 1967, when Israel seized the territory in the Six-Day War along with the Sinai peninsula, the Golan Heights, the West Bank and east Jerusalem. “The Zionist law included light punishments that encouraged rather than deterred those who take and trade in drugs, and there is no objective, national or moral justification for continuing to apply it,” Abed said. Israel withdrew its settlers and soldiers from Gaza in the summer of 2005. Two years later, Hamas seized control after a bloody internal struggle with the secular Fatah party of Palestinian president Mahmud Abbas. Abed said the Egyptian law on drugs would remain in effect until a new law could be passed by the Palestinian parliament, which has met only rarely since elections were held in 2006. The patchwork of laws governing the Palestinian territories reflect their turbulent history, with ordinances left over from the Ottoman Empire, the British Palestine Mandate, Egyptian, Jordanian and Israeli authorities. • Abridged from http://tinyurl.com/ycs8j5h (1 Dec 2009).
First person receives antibody to hep C USA – A volunteer has for the first time received a human monoclonal antibody that can neutralise the hep C virus. Researchers at MassBiologics of the University of Massachusetts Medical School (UMMS) have revealed that the volunteer received the antibody known as MBL-HCV1 on July 28, 2009, as part of a Phase 1 clinical trial. The researchers also revealed that the study was proceeding, and would eventually involve 30 healthy subjects in a dose-escalation trial expected to conclude later this year. “This trial will test the safety of the antibody and measure its activity in the subjects. This will help us determine the useful dose and other parameters as we plan for the next step in this program, which will be a phase 2 study in liver transplant patients,” said Dr Donna Ambrosino, executive director of MassBiologics and a professor of Paediatrics at the Medical School. Combination treatment is not routinely used prior to transplant surgery due to people’s weakened condition and because of strong anti-rejection medications used post transplant. After re-infection with HCV, nearly 40% of patients suffer rapid liver failure, with markedly reduced survival rates. To close that clinical gap, the MassBiologics researchers have designed the new antibody for therapy shortly before and after transplant surgery. • Abridged from Times of India: http://tinyurl. com/me3pef (7 August 2009)
news Hank Johnson talks about his hep C USA – United States Representative Hank Johnson is battling hep C. The representative from Georgia was diagnosed more than a decade ago. However, speculation over his significant weight loss and apparent illness forced the Representative to reveal his bout with the disease. “Over the past year, I have been on a robust course of treatment for hep C. I am pleased to announce that my therapy is progressing well. My doctor is encouraged by my response to treatment and expects success. “I plan to use my position as a public figure to raise awareness of the consequences of this infection and let others fighting hepatitis know that it is possible to succeed and excel while battling this disease. “The causes of this disease are many, but in the end it does not matter how someone contracted the virus. Like so many millions of others, I was infected many years without ever knowing how I contracted it. “Many people are fearful of the treatment regimen that impacts your life in unusual ways. Having come through a long course of treatment, I want to send a strong message that a cure is possible but you must be tested and treated.” When he was diagnosed initially 11 years ago, Johnson said doctors gave him 20 years to live. Today, Johnson says he is free of the virus, however, complications from the disease have left his liver badly damaged and deteriorated his overall health. • By Ioanna Dafermou. Abridged from http:// tinyurl.com/yc7joqy (7 Dec 2009).
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Image courtesy of Google Images
news
CSIRO invests A$2m in Avexa Australia – Avexa Limited announced that the CSIRO will invest up to A$2M into their hep C program through the Australian Growth Partnerships program. “Hep C is a serious condition. As one of the largest and most diverse scientific research organisations in the world, we are excited to work with the CSIRO to better understand this terrible disease,” said Dr Julian Chick, Avexa CEO. The agreement will enable Avexa and the CSIRO to combine skill sets and abilities to discover new treatments for hep C. The disease is bloodborne and the virus spreads within its host by replicating its RNA and using this to make the components that form new viruses. The Avexa/ CSIRO collaboration will initially focus on the identification of small molecule inhibitors targeting this replication process. Under the terms of the agreement, CSIRO could either share in the upside of the program if it is successful, or convert its $2M investment into equity once the program is complete, which is expected to be in two years. • Abridged from http://tinyurl.com/ylrj4oq (15 July 09).
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Aiming for convenience with syringe supply Australia – Convenience stores and 24-hour service stations could stock clean needles to help curb the spread of hepatitis and HIV among drug users, according to an advocacy group. A recent study shows every dollar spent on needle and syringe exchange programs saves taxpayers $4 by preventing life-threatening infections. In the past decade, programs have directly prevented more than 32,000 cases of HIV infection and nearly 100,000 cases of hepatitis C. Australians gained 140,000 extra ‘’disability adjusted life years’’, meaning people enjoyed better health for a longer period. It has prompted calls for governments to expand exchange programs, a proposal rejected by ACT Health Minister Katy Gallagher. The ACT Government and Opposition were also against establishing a ‘’safe injecting room’’. Unsterile syringes were still used for about 50% of all injections, said Hepatitis Australia vice-president Stuart Loveday. ‘’The system is failing Australians. The supply of injecting equipment is currently limited and not meeting the demand. Governments must invest in expanding needle and syringe programs as this report clearly demonstrates the benefits,’’ he said. • Abridged from The Canberra Times http:// tinyurl.com/yaggrnp (22 Oct 2009). The Return on Investment II report was released in Oct 2009 and we believe it is a very important piece of work. Given the urgent need to enhance the success of Australia’s NSP, we hope all readers will take note of this article. Ed.
Hep C treatment man jumps to his death Australia – Coroner Mary Jerram is investigating the death of a 40-year-old man who jumped off the Hawkesbury River Bridge on the F3 on New Year’s Eve in 2008. An inquest has heard police officers saw a car travelling slowly before it stopped in the middle of the bridge and the man got out and jumped over a railing. His body was later found in the water. The Counsel Assisting said officers stopped his wife and two children from also jumping off the bridge. The inquest heard the man was being treated for hep C with a drug that can produce or exacerbate symptoms of depression and psychosis in some people. It also heard that the man and his wife had earlier approached their solicitor to discuss a divorce. • Abridged from http://tinyurl.com/y9v7hw5 (21 Dec 2009). NB: Although this tragic suicide is connected to hep C treatment, please keep it in context. Treatment-related suicide happens only very rarely and treatment centre staff are trained to recognise warning signs and take steps to prevent this from happening. If you have any concerns about hep C treatment and feelings of self-harm, you can also call the Lifeline phone helpline: 13 1114. Ed.
news Most hep C goes untreated Australia – In Australia, tens of thousands of patients with hep C remain untreated despite major advances in therapy, an expert claims. More than 200,000 people are estimated to have hep C in Australia, but only 3,500 are treated for the disease each year, according to an editorial in Medical Journal of Australia. Part of the problem was a lack of awareness among GPs about the diagnosis and treatment of the condition, said author Associate Professor Margaret Hellard, head of the Centre for Population Health at the Burnet Institute in Melbourne. She cited studies showing 39% of GPs were confused about how to distinguish between current and resolved infections, and only 42% were aware of the effectiveness of current HCV treatments. “At the very least, GPs need to have a clear understanding of what are the management options and be able to provide that information to a patient early,” she said. Professor Michael Kidd, an advisor to the Federal Government on blood-borne viruses said while greater awareness of hep C treatment options was needed, more government funding would be necessary if tertiary treatment centres were to cope with a significant increase in the number of people with hep C. • By Sarah Colyer. Abridged from Australian Doctor, 20 Nov 2009. Original editorial: MJA 2009, 191:523-34.
We publish lots more hep C related news on our website. Do you want daily updates on our website news items? Just follow us on Twitter You’ll get the first 140 characters (a sentence or two) and a link to each news item as they are put up daily on our website. You’ll also get the link to the original source of the news item. It’s as easy as “one two three!” 1) Open a Twitter account. 2) In Twitter, click on ‘find people’ and search for ‘hepCnsw’. 3) Click on the ‘follow’ button.
The Hep Review Edition 68 March 2010 13
news Government warned Australian couple about deportee’s flee to treat poor health daughter’s liver Australia – Repeated warnings were made about cancer the dire health situation of a man before his deportation from Australia earlier this year and his death in London days later. Three doctors warned in 2007 that Andrew Derek Moore’s illnesses would not improve while he was in full detention. Then in April this year, the Commonwealth Ombudsman recommended that Moore, who had served a sentence for manslaughter, enter community detention so he could get specialist medical treatment. The man, recovering from alcoholism, was battling liver failure, fibromyalgia syndrome, hep C, chronic fatigue and depression. The Ombudsman’s report said Moore had strong family connections in Australia, where he had lived for 32 of his 43 years, and no ties in his birthplace, Scotland.
Australia – Doctors are pleading with the parents of a sick Perth girl to bring her back to Australia for potentially lifesaving treatment. Tamar Stitt was diagnosed with a rare form of liver cancer (in August 2009), and has been told she will die without chemotherapy. But the 10-year-old’s parents have fled to El Salvador where they are treating her with natural remedies. “We will never agree for Tamar to have chemo,” says the girl’s mother, Arely Stitt. “We have seen so many cases, and knowing what we know about natural remedies – they work slowly but it is worth it.” Doctors say a seven week course of chemotherapy will give Tamar a 50-60% chance of survival. Without it she will suffer a long and painful death.
It said ‘’no adequate explanation’’ had been given for delaying his transfer to community detention, for which he had met the guidelines in 2007.
The hospital decided to fight the family. In an extraordinary move, doctors asked the Perth Supreme Court to force Tamar to have the treatment.
But on May 12, Immigration Minister Chris Evans told Parliament he would not intervene in the case, saying it was not in the public interest.
The night before the case was due to be heard, the Stitts fled to El Salvador where they treated their daughter their way – wrapping her torso with a special red clay.
Three days later, Moore escaped from Maribyrnong detention centre during a visit to a medical specialist. He surrendered in September 2009 and remained in detention until his deportation in October. He was found dead on a London street two days after his arrival at Heathrow airport. A spokeswoman for Senator Evans said he was never presented with a community detention request for Moore, but was merely asked to consider whether to grant him a visa. She said Moore received appropriate medical care for his conditions. • By Joel Gibson. Abridged from http://tinyurl. com/ycmypnz (8 Dec 2009).
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“It’s nothing black magic or voodoo, it is all proper stuff which has been seen to work,” says Mr Stitt. • Abridged from http://tinyurl.com/yhqosfp (12 Oct 2009). PS: Tamar succumbed to her cancer on November 12th, 2009 in San Salvador where she was undergoing treatment with natural therapies, including hours of mud-wraps. There is little information on this, except to say that at the end, Tamar passed away in a San Salvador hospital undergoing last minute chemotherapy. Ed.
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Q&A:
Can combination treatment help prior to liver transplant? In people with advanced hep C, combination treatment before liver transplant may help them avoid recurrence of infection, say researchers at the University of Colorado in Denver, USA. Nearly 30% of people receiving the drugs showed no signs of hep C three months after receiving a new liver, reported Dr Gregory Everson. “This experience supports the concept that pretransplant therapy can prevent reinfection of the donated organ,” he said.
Not surprisingly, the best results were achieved in people whose hep C viral loads were reduced to undetectable levels at the time of transplant. Among 14 people in whom this was achieved, eight remained virus free at the post-transplant evaluation. • By John Gever, abridged from http://tinyurl. com/yle4k6o (6 Nov 2009). For more information, please contact the Hepatitis Helpline (details on page 3).
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my story
Jim’s story: light on the other side
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hen the words “hepatitis C” first passed my ears they did exactly that, passed right on by. I didn’t care much for whatever the doctor was trying to tell me, I knew nothing of hep C and I sure as hell didn’t care much to find out either. At the end of the day I figured I’m still standing, if the doc had forgotten to mention it, I and everyone else would still have been none the wiser. I was healthy with nothing going on to indicate anything let alone hep C – plus, what the hell do prison doctors know anyway? How I got hep C to start with remains a mystery with plenty of possibilities. Shooting up in prison was never my thing but the old prison tattoo gun tore into my skin on more than a few occasions; add a few fights and all those delights and well, I’m surprised I didn’t get a few other hep types to go with my C. It wasn’t till quite a few years later that the possibility of treatment for the hep C came around, and it wasn’t due to a sudden desire to start looking after myself, you know, “treat your body as a temple” and all that. I had been charged and imprisoned for armed robbery whilst “holidaying” in South Australia, my sentence was 16 years, with an eight year non-parole period. As my home was in NSW, the moment all court was over, I applied for an interstate transfer.
Four years later I found myself handcuffed and shackled on one of the last Ansett flights, being transferred to NSW. At that time, prison hep C treatment required a series of blood tests and a liver biopsy – which was fun! My liver function test results were going to get me into the treatment and they had to be high. Yes, they were high and I was on the prison hep C treatment program! Three injections a week, nine tablets a day, each and every day for six months. Absolute hell! No question about it. I can’t remember ever feeling so continuously sick, 24 hours a day for six months. Living walking death, simple. Three months into it you are tested to see if the treatment is working and if it’s worth torturing yourself any further. I was one of the ones with another three months of treatment ahead of me – it was working. Years later – sitting here writing this, I can thankfully say that the hep C has not been present in my body since I completed that program. I was tested at 3, 6, 9 and 18 months afterwards with all results showing negative for hep C. The end result for me was great but for too many people there isn’t even the chance to pursue a good result. Things have moved on from the old days and in lots of ways, treatment is easier to access. I’ve heard that only one or two in every hundred people with hep C have tried treatment. My treatment was tough but it worked and I often wonder why so many people are holding back from getting the treatment.
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Image courtesy of aeroplanemodel.com
Jim, NSW
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Awareness Week 2010 The 2010 Awareness Week campaign will promote testing, management and the personal side of living with hepatitis.
Hepatitis NSW is offering a number of grants (up to $1000) to support community organisations in NSW who would like to run an activity or event during National Hepatitis Awareness Week. Further information can be found at www.hep. org.au
The theme for 2010 is determined by the World Hepatitis Alliance and is “This is hepatitis…”, allowing for personal stories to be told as we move the focus to the experience of people living with viral hepatitis. The Australian campaign goes one step further, putting the spotlight on testing and clinical management.
The Love your Liver Lunches will be at the fore of the national campaign again in 2010. These are an annual feature of the campaign in which anyone can participate. Information packs on how to host a Love Your Liver Lunch will be put on the website www.loveyourliver.com closer to Hepatitis Awareness Week for people to download. • For more information about this year’s Awareness Week, please phone the Hepatitis Helpline.
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Image courtesy of Google Images
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ational Hepatitis Awareness Week will run from the 17th to the 23rd May, with World Hepatitis Day falling on the 19th. Each state and territory hepatitis organisation across the nation will be hosting events and supporting others to do the same.
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Applauding and valuing Australia’s needle and syring
In launcing a recent evaluation report on Australia’s needle and syringe program, Dr John Herron cham the importance of this national program to help prevent bloodborne viral infections and harm.
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hen I was a member of the Federal Joint Parliamentary Committee on AIDS I was sceptical of the needle and syringe program. Fortunately I kept my scepticism to myself and I have been pleased to see many studies, including the first Return On Investment report, resolve my scepticism. The second Return On Investment study provides further validation. It clearly shows the outstanding contribution to public health that needle and syringe programs have made – in preventing over 100,000 HIV and hepatitis C infections in the past 10 years. As the Federal Government focuses on preventative health issues there can hardly be a better example of the value that prevention brings to the community. Given that many others more qualified than myself will be able to clearly articulate the returns that we have seen in economic, health and social terms from the modest investment in needle and syringe programs, I would like to take this opportunity today to focus on the important role of needle and syringe programs in the past, today and into the future. In the mid 1980s Australia was very fortunate to have people with the foresight and the endeavour to introduce needle and syringe programs to protect people from the little known but fast spreading AIDS virus that became known as HIV. The combination of health, law enforcement and political compassion coupled with the local knowledge of drug users themselves is a mix that has given us an extraordinary story to tell. Whilst public support is currently strong for the needle and syringe program this was not the case 20 years ago. Sometimes political leaders have to make courageous decisions. It is never
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easy to move ahead of public opinion when in parliament as a representative of the people but at times it is vital. Yet this is exactly what we saw back then and we are now reaping the rewards. Australia enjoys one of the lowest, if not the lowest, rates of HIV infection amongst injecting drug users. My colleagues at the Australian National Council on Drugs, who regularly work and advise in countries around the world, all relate the horrible impact HIV has had on communities, with literally tens of thousands of people having acquired HIV as a result of drug use. In my life and particularly in my role as Chairman of the Australian National Council on Drugs I have met many people and families that are working through the pain that drug dependence can cause. It serves as a reminder that the best of families and the worst of families can all find themselves in this situation. While the needle and syringe program cannot stop this from happening, it can greatly reduce the likelihood of HIV or hepatitis C when people are injecting drugs.
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Image courtesy of Google Images
ge program
Sydney Central support group update for 2010
Image (unrelated to article) shows Prime Minister, Kevin Rudd, with John & Jan Herron, image courtesy of Google Images
Just as importantly, it can also be the necessary conduit to getting people assistance earlier than otherwise might have been the case. It is important to understand that people who inject drugs are members of our community and they have families and friends. Drug use occurs for many reasons but everyone is entitled to have their health protected. Don’t ever think that it could never be your child, brother, sister or friend that will need this help.
• Abridged from a speech by Dr John Heron, ANCD Chair, made at the launch of the Return On Investment II report, 22 October 2009. John Heron was a Liberal member of the Australian Senate from 1990 to 2002, representing Queensland. From 2002 to 2006 he was the Australian Ambassador to Ireland and the Holy See. To access the full speech, visit http://tinyurl.com/y9g9sfc
Support Groups here at Hepatitis NSW are going strong! In response to feedback, we sometimes have a guest speaker come along to the groups. November’s group saw a great presentation from naturopath, herbalist, homoeopath and researcher, Ses Salmond. Participants came away informed, empowered and with an expanded perspective on helping manage their hep C. If you’d like a copy of the info Ses presented, just give us a ring at the Helpline. The next speaker will be at our 18 May support group and will focus on Living Well with Hep C. Come along for the lowdown and much more! • For more details, call the Hepatitis Helpline on 1800 803 990.
St Vincent’s Hospital viral hepatitis clinic trials Trials for patients with hepatitis C
For more information about clinical trials, see ‘A guide to medical trials: what’s in it for you?’ Hep Review, ED66, page 20. • For further information about hep C clinical trials at St Vincent’s Hospital, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au
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Image courtesy of Google Images
The St Vincent’s Hospital Viral Hepatitis Clinic in Darlinghurst is recruiting patients for trials with new therapeutic agents, including combination therapy with pegylated interferon, ribavirin and newly developed protease inhibitors.
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Hep C and the issues Image by Thomas Hawk, courtesy of flickr.com
There are more men with hep C and their liver illness hit Rigg draws on these and other issues in an overview of
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en and women have different experiences in many aspects of their health, from life expectancy and the types of illnesses they will develop, to the number of visits they make to their GP. Men’s health issues have generally received less attention; only recently have events like “Movember” started to recognise the special health needs of men, and the best ways of communicating with them. Generalisations about men’s health include such things as: men take less care of their health; men take more risks in life; and men are less willing to visit health professionals. Like all generalisations, they are not true for all men, and don’t consider many other factors affecting health. They do contain some important truths about men’s health, though. What we do know is that there are more men than women with hep C and men’s long-term health outcomes tend to be less favourable. There are many reasons for this, which include transmission, progression and treatment of hep C.
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Image by Stuck in Customs, courtesy of flickr.com
Hep C affects men and women differently Men use injectable drugs more than women, and it is generally accepted that men are involved in more risky behaviours; these are some of the known reasons why men more so than women develop chronic hep C. What is less well understood is the way in which men are more susceptible than women to hep C infection. Some people are able to combat initial hep C infection and avoid progressing to chronic hep C; women are more likely to achieve this than men. Liver fibrosis occurs faster and more frequently in men, and they also experience more long-term liver damage. Men who have cirrhosis are five times more likely to develop liver cancer than women who have cirrhosis.
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ts home harder. Adrian men and hep C. Men typically consume more alcohol than women; this goes some way to explaining why men have more liver problems, but it is not the whole story. Jacob George, Professor of Gastroenterology and Hepatic Medicine at the University of Sydney, says that hormonal differences between men and women may be part of the reason for liver fibrosis occurring faster in men, and for the greater incidence of liver cancer in men. What are the barriers to men seeking treatment? Evidence has shown that men are less likely than women to seek medical treatment in most circumstances. There are no simple explanations for this; but, as reported in the Australian Government Department of Health and Ageing information paper Development of a National Men’s Health Policy 2008, men attend GPs less frequently, after being unwell for longer periods, and they have shorter, less in-depth consultations. Not acknowledging or showing weakness (and downplaying ill-health) is also a part of the general male stereotype. These barriers to men being tested for hep C also affect their access to treatment. Not being able to work while on treatment is a real fear for a lot of people. In cases where a man is the major income earner in a household, this is a very large consideration. Given that there is no certainty of clearing hep C, men may think twice when making decisions about treatment. Sean (from Sydney) successfully completed treatment for hep C. He was initially reluctant to seek treatment. His general reasons included fear of the various side effects of treatment, and possibly having to re-visit long-closed chapters of his life. Sean also highlighted some factors that may specifically influence men’s decisions about treatment.
“The potential loss of hair is something men just don’t like to face. Many men will also fear a loss of libido on treatment,” he says. “Doing treatment means explaining how you got hep C to those close to you, and especially your mates.” Professor George adds that men sometimes have a more chaotic lifestyle, and more psychiatric problems such as schizophrenia and depression; in some cases this may be a result of long-term drug use. These issues make it harder to access treatment, as well as making hep C treatment less of a priority. Improving outcomes for men with hep C Understanding that early detection can improve long-term prognosis may encourage men to be tested; this is especially relevant where men think they may have been exposed to hep C but have no symptoms. Barriers to testing can also be broken down if men understand that treatment is readily available, and will be given without judgement. If they know exactly where to go for treatment and how to approach it, they are probably more likely to pursue a treatment program – and the fewer steps involved, the better. Women respond to combination treatment for hep C better than men do, and have a higher clearance rate; this can make adherence more difficult for men. Men who are suffering badly from side effects may be more likely to stop treatment when they consider they may have a smaller chance of clearing their hep C. Health professionals who understand men’s issues and provide appropriate support are vital to improving outcomes for men with hep C. Sean’s GP strongly encouraged him to start treatment, and to have a plan. By having 48 weekly appointments for his interferon injections he got great support throughout treatment. These regular
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feature meetings helped greatly during the difficult times; the supervised injections helped him with compliance. Some men may be more likely to consider treatment if they can see examples of others who have successfully completed treatment. Professor George points out that most men do not lose their jobs and are able to continue working throughout treatment. He believes that men would be more open to treatment if they could clearly see the benefits of clearing hep C.
Image by Shavar Ross, courtesy of flickr.com
Some may feel that hep C is something they just have to live with, or that the negatives of treatment outweigh the positives of clearance; exploring these issues further may help to highlight the importance of treatment. Putting the side effects of treatment into context with some of the long-term symptoms of chronic hep C may help; for example, men who are worried about experiencing sexual dysfunction while on treatment may not be aware that impotence is a common symptom in men with advanced cirrhosis. Sean was initially suspicious of the way the medical profession seemed to be pushing
treatment so hard; he says he would have felt more confident about starting treatment if he had been able to speak with someone who had been through it, and discuss the reasons for their decision. This is where services such as Hep Connect can help; medical professionals can recommend treatment, but talking to someone who has had the same experience can really influence decisions.
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Image by DeusXFlorida, courtesy of flickr.com
There is a gap between providing treatment resources and making these resources easily accessible; targeting hep C treatment information to men would help close this gap. Men use health services less than women do, but this cannot be solely attributed to men’s attitudes towards their health. Development of a National Men’s Health Policy 2008 shows that men do respond to health messages aimed at them, and services that target men and present themselves as accessible are well utilised. • Adrian Rigg is a freelance health writer who writes for The Hep Review: adrian.rigg@yahoo. com.au
obituary
Rowland S. Howard loses his battle with liver cancer Howard’s signature distorted chords were often on display in the punk outfit The Boys Next Door and its evolution The Birthday Party fronted by charismatic singer Nick Cave. Drugs and creative control divided the band in 1983. The fierce devotion fans had for The Birthday Party parlayed into a devoted cult following for Crime and the City Solution, and These Immortal Souls. The lanky guitarist packed a powerfully morose reverb. His blues and jazz base could be found on numerous collaborations with Lydia Lunch, Nikki Sudden, Thurston Moore, The Gun Club’s Jeffrey Lee Pierce and Henry Rollins. Teenage Snuff Film was the 1999 independently released solo album fans and critics had been waiting for but it would be another ten years before Howard would attempt another release. Once again personal tragedies and drug dependence left Howard unable to focus and wounded the self effacing artist. During the 2000s, he ended his marriage, lost his mother and by his own account got to the point where he didn’t want to wake up in the morning. Battling the side effects of hep C medication which caused severe depression, Howard stopped writing songs and playing guitar. Things slowly began to turn around as he accepted offers to work.
In 2009, Howard released Pop Crimes featuring Birthday Party bandmate Mick Harvey on drums and would realise the success that escaped him for so many years. Tragically, his health continued to be in decline. Several dates were cancelled due to illness and the guitarist was on a waiting list for a liver transplant. The St Kilda’s Prince Bandroom show in October would be Howard’s last public performance. “Sometimes people are ready to go because they have been sick for a long time, but Rowland really wanted to live. Things were going well for him outside of his health and he wanted to take advantage of that and he was very disappointed that he wasn’t well enough to do so.” said Harvey. In a prepared statement issued on his website, Nick Cave called Rowland “Australia’s most unique, gifted and uncompromising guitarist. He was also a good friend. This is very sad news. Howard will be missed by many.” “Rowland was extremely sensitive, wonderfully humorous, beautifully unique,” said Lydia Lunch, New York singer, poet, writer, and actress, in response to news of his death. “His magical presence and haunting music lives on. Celebrate his genius! A true visionary. Masterful. Poetic. Sublime.” • Abridged from http://tinyurl.com/ygywmvj (1 Jan 2010).
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Image by The other Martin Taylor, courtesy of flickr.com
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n 30 December 2009, Rowland S. Howard lost his battle with liver cancer and died at Austin Hospital in Melbourne. He was 50 years old.
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A new decade of hep C tran After twenty years since its discovery, hep C enters a new decade. Kirsty D’Souza takes a closer look at where we are now heading with hep C transmission and our attempts to control its spread.
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epatitis C got its name a little over twenty years ago but, according to research published recently by scientists in Greece, the first transmissions of the virus probably started around 1900. It was able to thrive because it coincided with the beginning of wide-spread use of blood-transfusions and later with the advent of injecting drug use. For a long time it was diagnosed by what it wasn’t – “non-A, non-B hepatitis” – but a reliable test for hep C finally became available in Australia in 1990. Since then, public health initiatives, such as the Needle and Syringe Program (NSP) and the screening of all donated blood and blood products, have been successful in reducing transmission of the virus in this country. The annual rate of infection has fallen dramatically since 1990. However, hep C continues to take its toll.
Young people, particularly young women
Although transmission rates are down, more than 11,000 people were diagnosed with hep C in Australia in 2008. A growing number of people living with the virus, who are entering the advanced stages of fibrosis of the liver and are at risk of severe liver damage, will need increased medical care and support. Hep C infection is already the most common reason for liver transplant in this country. Meanwhile only a small percentage of people who have the virus embark on treatment each year.
Those living in vulnerable circumstances are less likely to have access to clean equipment and a suitable environment for safe injecting. They may also have less access to information about hep C and how to avoid it.
Most of the general population don’t have to think much about hep C. It’s most prevalent amongst people who inject drugs or have done so in the past. Around 80% of existing cases and almost 90% of new cases of hep C are a result of drug injecting. It’s spread by sharing any kind of injecting equipment which might have come into contact with the blood of another user who has the virus – that includes needles, syringes, swabs, filters, tourniquets, mixing water. Also, if you get blood on your finger after putting pressure on your injection site then help someone else to inject and feel for their vein, your blood could transfer to their skin and possibly be pushed in by the needle point.
Most people inject drugs for the first time between the ages of 15 and 20. The first use may be spontaneous rather than planned and, at this age, people may have heard little or nothing about hep C and how it’s transmitted. Young people are often dependent on others in the early stages of drug use to help them administer the drug. This is particularly true of young women who are often introduced to injecting drugs by a partner. They may inject after their partner, perhaps sharing equipment, or they may be injected by their partner or another, more experienced user. These practices tend to put them at high risk for hep C. It’s safer for people to be in control of their own injecting. Homeless people
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nsmission and prevention People in prison
People from other cultures and countries
Prison is an independent risk factor for hep C. The level of infection is much greater in the prison population, many of whom have a history of injecting drugs. There are few options for safe injecting in prison and because the level of infection is so high, there’s increased risk of the virus being transmitted through other means such as unsafe tattooing, body-piercing or blood-spills.
With health and social issues, people from other cultures and countries are referred to as having Culturally and Linguistically Diverse (CALD) backgrounds. This includes people who have come to Australia from countries with very high rates of hep C infection such as China and Egypt.
Aboriginal and Torres Strait Islander people Aboriginal and Torres Strait Islander people make up 2.4% of the general population but more than 8% of the population living with hep C. They are over-represented in the prison population. There may also be more cultural shame and stigma around injecting drugs so the problem may be more likely to be hidden. Generally Aboriginal people have a lower level of health care and less access to the information and treatment they need.
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Members of this group may have contracted hep C through unsafe medical procedures or vaccinations in their country of origin. Or, if they injected drugs, they would have been at greater risk of getting hep C because of the higher levels of infection. People who don’t speak English well may not access NSP as much as others, nor might they pick up or easily understand information about hep C because the information available may not be culturally appropriate. Another CALD barrier to dealing with hep C is that some cultural groups may be particularly reluctant to admit they have hep C or are at risk.
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feature Cursed by stigma
Public health successes
People involved in high-risk behaviours often live with a level of discrimination and exclusion. Sadly a diagnosis of hep C can add to this, bringing with it a high degree of stigma and shame. This is something that has been changing only very slowly in the last twenty years.
Apart from the screening of blood products, one of the most powerful weapons against the spread of hep C has been Needle and Syringe Programs (NSPs). They started in the late 1980s initially as a way of combating the spread of HIV/AIDS in people who injecting drugs. They provide new injecting equipment – free, or for a minimal charge – so that people who inject drugs can have access to sterile equipment each time they use. They also provide safe disposal of used injecting equipment. They don’t, however, allow people to inject drugs on their premises.
As far as diseases go, hep C ticks all the boxes for fear and stigma. It’s infectious – so if you’ve got it, you’re seen as a potential risk to others. It’s progressive, there’s no vaccine to prevent it and despite good cure rates, treatment take up is very low.
Needle and Syringe Programs – • 3,000 sites nationwide including commercial pharmacies and syringe vending machines. • 30 million clean syringes distributed each year. • More than 96,000 hep C infections prevented in the last 10 years. • 32,000 HIV infections prevented in the last 10 years.
Because the most common means of transmission is by injecting drugs, it is widely seen as self-inflicted so empathy levels are low. The public, in common with a number of health professionals, are generally not well-informed about it and may dismiss it as a “junkie’s disease”. The stigma surrounding the virus, and its most common means of transmission, makes it much harder to get control of hep C in the population. This is recognised as a significant barrier to reducing the transmission rate still further. People who inject drugs are often portrayed as weak or as monsters in the popular press. They report being treated with distaste or hostility by some health professionals. Add to that the fact that it’s possible to live with the virus for many years without worrying symptoms and it’s easy to understand why someone would be reluctant to put their hand up to be tested for hep C. And if you aren’t prepared to acknowledge you’re at risk of getting hep C, you’re not likely to access the support, treatment and information to help you stay healthy and avoid transmitting hep C to others.
Last year’s Return on Investment II report into the effectiveness of NSPs showed that they’re worth every cent spent on them – for every dollar of expenditure, they pay back $27 in savings over the long term. NSPs provide much more than sterile injecting equipment – particularly those NSPs that were created exclusively to do this work and have specially trained staff. They are a vital point of contact with the people who most need to know about hep C. Many offer information about how to stay healthy and how to avoid bloodborne viruses. They can also provide referral to treatment for drug dependency, hep C testing and other supports for a population which often feels isolated from health, social and legal services. Research shows that NSPs need to be expanded so that they’re distributing twice the current number of syringes. This would have the effect of halving the annual incidence of hep C.
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feature It’s also been suggested that opening hours should be improved so that more have a 24 hour service – most NSPs operate office hours – and new outlets should be created particularly in rural and remote areas. Flaws in the provision of Needle and Syringe Programs Despite their success in helping to slow the spread of hep C, Needle and Syringe Programs are not available to one of the groups most at risk from infection. There are no NSPs in Australian prisons. Any injecting equipment that makes its way into a custodial setting is likely to be used and shared by a large number of prisoners. Many prisons provide a cleaning fluid which can be used to soak injecting equipment, but even if prisoners have the opportunity to do this, the process can only reduce the risk of hep C – it isn’t guaranteed to eliminate it altogether. Drug users who inject while in prison are at very high risk of getting hep C. Corrective services in Australia believe there should be a total ban on drugs in prisons and that providing clean syringes would be at odds with that. There are also fears that, if injecting equipment was provided, prison officers would be at risk from needle-stick injuries and from assaults using infected needles. That risk already exists, though, with the current situation. A properly controlled prison NSP would be likely to help reduce that risk. There are about nine European countries successfully operating prison NSP programs but Australian prisons have no clear plans to trial anything similar.
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No matter how hard Needle and Syringe Programs strive to provide a respectful and non-judgmental service, there are going to be people who need clean injecting equipment but who don’t want to front up to an NSP. Some people don’t want to go to an NSP because they don’t want to be identified as a drug user. Others may distrust a service that isn’t run by people from their particular culture or background. 17
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feature The Power of Peers
The Way Ahead
One of the anomalies in the provision of clean syringes is that someone who has picked up some at an NSP can’t legally give one of them to someone else to inject illicit drugs. This is sometimes called secondary supply or secondary exchange and is an offence under the Drug Misuse and Trafficking Act 1985. In practice, it happens all the time – people give clean syringes to other people who need them – but, groups such as the New South Wales Users and AIDS Association (NUAA) argue if NSPs want to expand their services to ensure clean equipment gets to as many injectors as possible, an effective way to do so would be through peer distribution – or secondary supply. It could be a particularly powerful way of reaching some of the high-risk groups mentioned earlier.
The current NSW government strategy on hep C and the two national hep C strategies of the last ten years have all recognised the impact of stigma and discrimination on the lives of people with, or at risk of the virus, but there has been little progress. This has led to a call for a human rights approach to all aspects of hep C policy, based on the principles that everyone has an equal right to the best available health care and to be treated fairly and with respect.
Similarly, one of the most effective ways of making sure hep C messages – about safe injecting and being blood-aware – are listened to, is to involve people who know what they’re talking about. This means encouraging injecting drug users to develop their own solutions to problems and to spread the message amongst their peers. It’s the best way of getting information to some groups seen by mainstream services as hard-to-reach as it gets around the scepticism some injecting communities feel towards official sources.
Research shows that injecting drugs is not usually a life-long habit. Most people eventually adopt safer ways of using drugs or stop using altogether. So in terms of public health – and humanity – it makes sense to provide ways for them to stay well and free from infection while they’re injecting drugs as well as access to appropriate information, support and clinical care if they become infected with a bloodborne virus. Australia has an enviable record in hepatitis prevention so far. The biggest battle now is to increase our NSP outputs and work with those people at risk of the virus or already living with it in order to change attitudes and behaviours in order to lessen drug injecting risks. • Kirsty D’Souza is a freelance health writer. (kirstieds@hotmail.com)
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All images for this article, courtesy of www.flickr.com: 1 bicycle thief, 2 chappyphoto, 3 Noize Photography, 4 driftwood, 5 Here in Van Nuys,
6 Steffe, 7 Ikhlasul Amal, 8 Dr John2005, 9 gaspi your guide, 10 Julie70,
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11 zenobia_joy, 12 JRGCreations, 13 david gastao, 14 leo.eloy, 15 looking4poetry,
16 jasohill, 17 Joel Carela Photography, 18 jasohill, 19 laurenmarek, 20 NEFATRON,
21 toddwshaffer, 22 solofotones, 23 wazari, 24 Quasic, 25 jasohill,
26 Ashie B, 27 LeonidasGR, 28 r.f.m II, 29 freizeit, 30 Sergio Lubezky,
31 Didier-Lg, 32 photosavvy, 33 pixarman, 34 Sergio Lubezky, 35 Alain Bachellier,
36 Didier-Lg.
feature
HELLO HEPATITIS HELPLINE “Hi. I went to my GP a week ago, and he told me that I have hepatitis B. I’ve spent all week worrying. I don’t know much about hep B, and I’m really anxious about how this is going to affect my relationships in the future. I’m scared that I can’t have kids now.” We’re really sorry to hear that you’ve had such a tough week. What you’ve described is a really common response to being diagnosed with hep B, and it’s normal to feel scared and upset. There are a couple of things that you should know, and they might help to clear up some of the worries that you have. Firstly, you’re not alone. There are around 160,000 people living with hep B in Australia, and many people don’t know they have it. It’s a much more common illness than people realise. Secondly, the testing process for hep B can be quite complicated. Depending on what sort of tests you’ve had, the outcomes for your health might be quite different. With hep B there is an acute and chronic stage of infection. If you have an acute infection as an adult (which means you’ve had hep B for less than six months), there’s a 95% chance that your body will get rid of the virus on its own. On the other hand, if you have chronic hep B the virus will remain. The good news is that there is treatment available to help manage chronic hep B. Not everyone needs treatment, but it’s good to know it is an option. It’s also really good to know that there’s a safe and effective vaccine available that can prevent others getting the virus. The vaccine is given to all children now, and is recommended
for many other people. For example, people who have household or sexual contact with someone with hep B, those with hep C or HIV, people who inject drugs and men who have sex with men are some of the people who should be vaccinated. People with hep B are entitled to the same opportunities as everyone else: this includes having healthy and happy relationships and children. Hep B can be transmitted from mother to baby, but there is an injection that can be given to babies soon after they are born that can significantly reduce the chance of the virus being passed on. Lastly, it’s important to know that people with hep B can live long and healthy lives. Being diagnosed is certainly not a death sentence, and there are ways of managing the virus. It’s a good idea to have regular contact with a GP and liver specialist. Try to eat a balanced healthy diet and get some exercise. Ensuring that you have access to information and support when you need it is really important as well. Ask for a follow-up appointment with your doctor (if you haven’t already) so you can ask any questions that may come up; you often don’t think of these things till later! Finally, remember that we are always happy to answer as many questions as we can here at the Hepatitis Helpline. •
Hepatitis Helpline. (This material was compiled from the proceedings of the 17th National Symposium on Hepatitis B&C, and material from www. hepatitisaustralia.com)
‘Hello Hepatitis Helpline’ is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity. FERRAL. INFO. SUPPORT. RE L TIA EN ID CONF
hepatitnise helpli
The Hep Review Edition 68 March 2010 29
Safer Injecting Procedures Arteries Part 2
Arteries Part 2
But if you hit a big artery the blood will probably: force back the plunger and/or be frothy when you draw back.
Larger arteries have a pulse never inject into a blood vessel that has a pulse.
You can’t always tell veins and arteries apart by the colour of the blood - all blood is red.
These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.
30 www.hep.org.au
The Hep Review Edition 68 March 2010 31
23
The artery may: bleed heavily when you take out the needle and/or cause a rapidly growing bruise under the skin hurt if you try to inject.
The Hep C Review harm reduction poster, March 2010 (#23). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au
If you hit an artery don’t inject into it: Apply firm pressure for at least 30 minutes If possible, raise the affected area Lie down Dial “000” for an ambulance Contact a doctor, even if you appear to have stopped the bleeding.
However, if you are pushing a needle deep into your arm or leg and hit a small blood vessel it may be an artery that is too small to push the plunger back, but you could still cut off the blood supply to an area - this is one of the risks of digging around for a deep vein.
Do Di n’t g De ep
feature
The needle and the
Whether or not to introduce a needle exchange in the ACT’s new Alexander Maconochie Centre prison i
I
t’s arguably the most controversial issue in the Alexander Maconochie Correctional Centre’s brief history. The back-and-forth over a needle exchange program could cause the ACT Government more consternation than all other problems – the delays, security problems and smuggled contraband – combined. By the end of 2010, the government will have the results of 18 months of screening for blood-borne diseases. And sooner or later, it will have to make a decision. It’s been 10 months since the jail accepted its first prisoners, and voluntary tests clearly show evidence of hep C in the jail. As Health Minister Katy Gallagher noted, it’s not all that surprising. “I think there is fairly widespread agreement from any data that’s kept on the health of prisoners that there are usually very high hepatitis C rates,” she said.
Image by rakastajatar, courtesy of flickr.com
Hep C and blood-borne diseases go hand in hand with injecting drug use, which in turn is inextricably linked to the prison population. But the prevalence of hepatitis C in the new jail is significant.
32 www.hep.org.au
Almost 60% of males tested positive for hep C antibodies, as did more than 70% of the much smaller female population. Women traditionally rate higher in hepatitis C prevalence because they are more likely to be incarcerated for drug-related crime. Arguably of greater concern is that one inmate tested was seroconverting. When a person has blood-to-blood contact with an infected person it can take several months to develop hep C;
damage done
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is a vexed and emotional issue, writes Louis Andrews of the Canberra Times. a process called seroconverting. According to ACT Health, the seroconverting individual had been in and out of the prison before being tested. Gallagher said it was unclear if the detainee contracted the diseases in custody or in the wider community, and suspected the truth might never be known. Tracking new infections could give a clearer picture of whether the disease is being contracted within the jail. “I think this is what we will be watching rather than rates of hepatitis C, I think rates of seroconversion are more relevant,” she said. Hepatitis Australia president Stuart Loveday said research completed in NSW revealed tracking new incidents of hep C was extremely difficult in a transient population. The relatively small sample size of the Alexander Maconochie Centre is also problematic. ACT Health is keeping tabs on the issue through tri-monthly audits, but it’s a tough issue to monitor, given the transient nature of the prison population. Remandees come and go, as eventually do most sentenced prisoners. Given the link between crime and intravenous illicit drug use, it’s possible a habitual drug user who has contracted the virus in the wider community could wind up behind bars. There are some compelling public policy arguments for a needle exchange. A University of NSW study found the needle and syringe programs operating in the wider community saved an estimated $1.28 billion in health-care costs in the last decade. The study also found the programs averted 32,000 HIV infections and more than 96,000 hep C infections. But the custodial needle exchanges have failed to get off the ground in Australia. An exchange at the ACT’s jail would not only be the nation’s first, it would be the first in the English speaking world. Some argue a needle exchange program would be an admission of defeat; an acceptance of the presence of drugs inside prison walls.
While the Government had long intended to run an 18-month monitoring program, Gallagher said they wanted a drug-free prison from the outset. But the best intentions often come to nought. The Canberra Times reported in September 2009 that just over two months after the jail’s opening, 24 prisoners tested positive for illegal drugs. Traces of ice, heroin and cannabis were found in their systems. And by June, Corrective Services had found a syringe, bongs, razor blades and tablets inside the prison. Gallagher acknowledged a drug-free prison was ‘’pretty ambitious”. Families and Friends for Drug Law Reform president Brian McConnell said calls for a greater focus on security were largely irrelevant. “There’s no prison in the world where the drugs don’t get in. It’s a fact of life, and you’ve got to deal with the realities of the situation,” he said. In 1992 Switzerland introduced the world’s first prison needle exchange, in part an act of civil disobedience by a prison doctor. The doctor began handing out needles unofficially to prisoners he believed were injecting drugs. When the covert program came to light the prison director accepted the doctor’s arguments and the exchange was sanctioned. Germany, Spain, Italy, Portugal and Greece followed suit. Staff safety has been the paramount argument against needle exchange programs in Australia. In 1991, a HIV positive inmate at Sydney’s Long Bay jail stabbed a guard with a blood-filled syringe, infecting the officer with the virus. The ensuing security clampdown sparked riots. The state brought in tougher sentences of up to two years for people caught bringing syringes into prisons. The officer died of the virus in 1999. Community and Public Sector Union ACT regional director Vince McDevitt said he knew no prison officer in the ACT who thought a needle and syringe program was a good idea.
The Hep Review Edition 68 March 2010 33
feature “They do not want to be confronted by a drugaffected prisoner carrying a hypodermic,” he said. McConnell acknowledged syringes could be used as a weapon, but said the Long Bay incident occurred when needles were already prohibited at the jail. “Which is the lesser risk, a syringe that is contaminated and hidden or a syringe that is in clear view and uncontaminated?” “I know which I’d choose.” But McDevitt said guards already had search training and used protective gloves to minimise the risk. He said the union was sympathetic to the merits of needle exchange advocates. “But balanced against that are the very real concerns of staff,” he said. “How would you like to go to work and be confronted by a drug affected, needle-wielding prisoner?” There’s another potential hurdle in the Department of Justice and Community Safety’s collective agreement. A clause hammered out between the ACT Government and the union states “no needle exchange program, however presented, shall be implemented without prior consultation and agreement by the parties to this Agreement on how such a program can be implemented”. McDevitt said any attempt to force a program through without consent of prison staff could lead to industrial action, although he expected that was unlikely.
A 2007 ACT Human Rights Commission audit of the now-mothballed Belconnen Remand Centre, conducted in anticipation of the new jail’s opening, called for an exchange program to be implemented. The commission raised concerns that, should a prisoner contract hepatitis C or another bloodborne disease and an exchange wasn’t running, a law suit could be brought before the Supreme Court. Acting Human Rights Commissioner Mary Durkin said the commission continued to advocate for a program. Hepatitis Australia president Stuart Loveday said if a program was to emerge anywhere, it was most likely to be at the Alexander Maconochie Centre. But McDevitt argued older prisons interstate were a more viable option. “What causes anxiety is that in this country it’s unprecedented,” he said. “Here you’ve got an ACT Government with a jail that’s been open for half an hour, trying to set this ground breaking precedent.” Loveday maintains there’s already a needle exchange running in the nation’s jails. “It’s just that it’s controlled by the prisoners. It’s clandestine, it’s unsterile, it’s extremely dangerous and it’s out of control.” • Abridged from The Sunday Canberra Times (17 Jan 2010).
“The union is not maintaining some irrational ideological position, we maintain that our concerns are genuine and serious, and could cost an officer their life,” he said.
A proven case of hepatitis C transmission, or, worse, HIV transmission, within the jail could also open up a legal can of worms for the Government.
34 www.hep.org.au
Image courtesy of Google Images
“I think the key to this is education, and a willingness to enter into the discussions in a spirit of cooperation and good will.”
obituary
Stuart M. Kaminsky: a grand master departs
S
tuart M. Kaminsky, a writer of impressive range who created four distinctive detectives for series set in Los Angeles, Chicago, Moscow and Florida, joined the elite of his craft in 2006 when the Mystery Writers of America named him a Grand Master.
Files and CSI.
A native of Chicago’s West Side who decamped for Florida in 1989 but maintained ties to his hometown, Kaminsky, 75, died of complications from hepatitis and a recent stroke on 9 October 2009, in Barnes-Jewish Hospital in St. Louis, said his son Peter.
In 1979, Paretsky attended his class on “Writing Detective Fiction for Publication” at Northwestern. He encouraged her to set her novels in the financial world because that’s the field she was in at the time, read her manuscript and provided a connection to his agent and publishers.
Kaminsky, who from 1972 until 1989 taught in the radio, television and film program at Northwestern University, also wrote non-fiction books on film directors Don Siegel (Dirty Harry), Ingmar Bergman and John Huston, and actordirector Clint Eastwood. He supplied the dialogue for Sergio Leone’s gangland epic Once Upon a Time in America and produced harrowing thrillers like When the Dark Man Calls and Exercise in Terror. He also wrote novelised versions of the television shows The Rockford
“He was incredibly productive as a writer, always exploring new forms and new ways to tell stories,” said Chicago mystery writer Sara Paretsky, who credits Kaminsky with giving her career an early boost.
“I don’t think it’s overstating it to say I owe my career to him,” said Paretsky, author of 13 novels featuring female private investigator V.I. Warshawski. A Cold Red Sunrise, part of the Porfiry Rostnikov series, won the 1989 Edgar Award for best novel from the Mystery Writers of America. As a Grand Master Award winner, Kaminsky is among luminaries of the genre including Agatha Christie, Raymond Chandler and Elmore Leonard. Kaminsky graduated from Marshall High School and was an Army medic in the 1950s, when his family believes he got hep C. He worked as a photographer with a Milwaukee newspaper, did university public relations and wrote for obscure trade publications. In 1972, he received his doctorate from Northwestern’s School of Speech.
courte Image
sy of
Goog
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An early novel was rejected as pretentious by an agent who told him he should stick to writing textbooks, his son said. “He stopped trying to write something moving and meaningful and important and just (went with) what was fun to write,” his son said. “It worked.” • By Trevor Jensen. Abridged from http://tinyurl.com/yljjhvq (13 Oct 2009).
The Hep Review Edition 68 March 2010 35
feature
Social determinants of he This article by Richard Wilkinson and Michael Marmot introduces Social determinants of health: the solid facts, a discussion paper from the World Health Organization.
E
ven in affluent countries people who are less well off have shorter life expectancies and more illnesses than those who are better off. Not only are these differences in health an important social injustice, they also draw attention to some of the most powerful determinants of health standards in modern societies. In particular, they have led to a growing understanding of the sensitivity of health to the social environment and to what have become known as the “social determinants of health�.
Social Determinants of Health: The Solid Facts is a booklet that outlines the most important parts of this new knowledge. The ten topics covered are: 1. the social gradient 2. stress 3. early childhood 4. social exclusion
Food Because global market forces control the food supply, healthy food is a political issue. A good diet and adequate food supply are central for promoting health and well-being. A shortage of food and lack of variety cause malnutrition and deficiency diseases. Excess intake (also a form of malnutrition) contributes to cardiovascular diseases, diabetes, cancer, degenerative eye diseases, obesity and dental caries. Food poverty exists side by side with food plenty. The important public health issue is the availability and cost of healthy, nutritious food. Access to good, affordable food makes more difference to what people eat than health education. Economic growth and improvements in housing and sanitation brought with them the epidemiological transition from infectious to chronic diseases – including heart disease, stroke and cancer. With it came a nutritional transition, when diets, particularly in western Europe, changed to over consumption of energy-dense fats
36 www.hep.org.au
5. 6. 7. 8. 9. 10.
working conditions unemployment social support drug dependence food transport
Each chapter contains a brief summary followed by a list of implications for public policy. Health policy was once thought to be about little more than the provision and funding of medical care; the social determinants of health were discussed only among academics. As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we also need to feel valued and appreciated. We need more social
and sugars, producing more obesity. At the same time, obesity became more common among the poor than the rich. World food trade is now big business. The General Agreement on Tariffs and Trade and the Common Agricultural Policy of the European Union allow global market forces to shape the food supply. International committees such as Codex Alimentarius, which determine food quality and safety standards, lack public health representatives, and food industry interests are strong. Local food production can be more sustainable, more accessible and support the local economy. Social and economic conditions result in a social gradient in diet quality that contributes to health inequalities. The main dietary difference between social classes is the source of nutrients. In many countries, the poor tend to substitute cheaper processed foods for fresh food. High fat intakes often occur in all social groups. People on low incomes, such as young families, elderly people and the unemployed, are least able to eat well.
ealth: diet and food
feature
interaction within society. We need friends and the feeling of being useful. And we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.
Image courtesy of Google Images
By tackling some of the material and social injustices, social policy will not only improve health and wellbeing, but may also reduce a range of other social problems that are associated with ill health and are rooted in some of the same socioeconomic processes. • In ED61, we began our coverage of Social Determinants of Health. Over the following editions of The Hep Review, we are featuring the remaining topics (far left) that underpin this social viewpoint. Ed.
Dietary goals to prevent chronic diseases emphasise eating more fresh vegetables, fruits and pulses (legumes) and more minimally processed starchy foods, but less animal fat, refined sugars and salt. Over 100 expert committees have agreed on these dietary goals. Policy implications Local, national and international government agencies, non-government organisations and the food industry should ensure: • The integration of public health perspectives into the food system to provide affordable and nutritious fresh food for all, especially the most vulnerable; • Democratic, transparent decision-making and accountability in all food regulation matters, with participation by all stakeholders, including consumers;
• A stronger food culture for health, especially through school education, to foster people’s knowledge of food and nutrition, cooking skills, growing food and the social value of preparing food and eating together; • the availability of useful information about food, diet and health, especially aimed at children; • The use of scientifically based nutrient reference values and food-based dietary guidelines to facilitate the development and implementation of policies on food and nutrition. In the next edition of The Hep Review we will cover access to transport. • Abridged from Social determinants of health: The solid facts (second edition), World Health Organization, 2003. The full booklet can be downloaded from http://www.euro.who.int/ document/e81384.pdf
• Support for sustainable agriculture and food production methods that conserve natural resources and the environment;
The Hep Review Edition 68 March 2010 37
feature
All you need 2 do is
Don’t cuff yourself Welcome to the second instalment of don’t cuff yourself. In the first instalment we established some of the key issues around hep C. In this piece we are going to look at hep C inside NSW prisons as well as some of the jargon.
Jargon Some of the terms used with hep C can be confusing at times, so we are going to do some jargon busting. HCV = hepatitis C virus (or hep C virus) HCV antibody positive = if blood tests say you are ‘hep C antibody positive’, it means that at some stage, the hep C virus has entered your body – but it does not mean that you have it now. HCV antibody negative = if blood tests say you are ‘hep C negative’, it suggests you don’t have hep C. PCR = Polymerase Chain Reaction test – a blood test using a process to amplify pieces of the genetic make-up of a cell or virus, so that the presence of the virus itself can be determined. A PCR test will determine if you currently have a chronic hep C infection.
38 www.hep.org.au
Interferon = A naturally occurring chemical (protein) in the body that helps the immune system to clear viruses such as hepatitis B or C. Our livers produce at least 26 types of natural interferon. Produced by body cells in response to invasion by viruses and other intracellular parasites. It is also the name of the injections used in current combination treatment for hep C. Genotypes = There are several different types of hep C. The most commonly used classification of hep C has the virus divided into the following genotypes (main types): 1, 2, 3, 4, 5 and 6.
ask Hep C is on the increase in particular within the NSW prison system and it is time that we take the bull by the horns and deal with it. If you feel you have been at risk then get tested. How can you do that? There are a number of ways you can kick the process off: • Speak with a Justice Health nurse • Speak with a drug and alcohol worker • Have a chat with other prisoners who have been through treatment • Phone the Prisons Hepatitis Helpline From time to time and in different jails you will see different posters and pamphlets distributed by AOD or clinic staff or which have come from Hepatitis NSW (formerly Hepatitis C Council NSW), containing information about hep C. We need more health promotion as inmate notice boards are rare, and jails that have them often don’t post anything on them. It would be good to know what information is available to you at different jails. Are there posters around in your jail? Are pamphlets readily available to you outlining what options you have if you have hep C or want to be tested or treated?
You can write to me Bob Barco @ PO BOX 432 Darlinghurst, NSW 1300. I will reply and answer questions as is the name of this column ALL YOU NEED 2 DO IS ASK. In the first instalment we looked at the barriers to hep C services in NSW prisons. What barriers have you directly experienced? I would like to hear from you about what barriers are stopping you having treatment or tests or just counselling. So let me know. Remember that Hepatitis NSW has a Prisons Helpline which is a free call and can help you out with any information you might need which is all accurate and up to date. Just put in your min and pin and then number 2 and then 3 and you’ll get through. Health promotion on the inside can be further improved by setting up Peer Mentors like those who were supported by the Health Promotion Unit. I guess the more proactive that Corrective Services can be, the better that prisoners will be able to cope with their hep C. Don’t be discouraged by long waits for the doctor. Get a test if you are worried. Just talk to Justice Health staff. See you next issue.
•
Bobby B (NSW)
The Hep Review Edition 68 March 2010 39
Image by 1981Adam, courtesy of flickr.com
HCV and the Inside
Image, far left, provided for All you need 2 do is ask, by Long Bay MSPC inmate.
feature
opinion
Injectable heroin more effective than o Dr Alex Wodak, President of the Australian Drug Law Reform Foundation, writes on the need to consider the best options for treating chronic drug dependence. The current issue of The New England Journal of Medicine, probably the world’s most prestigious medical journal, details the results of a recent Canadian trial comparing injectable heroin with oral methadone as a treatment for heroin injectors. Like the four previous European trials comparing these two treatments during the past 15 years, the Canadian researchers found that injectable heroin was more effective than oral methadone. As in the previous trials in Switzerland, the Netherlands, Spain and Germany, the Canadians recruited a group of severely dependent heroin injectors who had not benefited from multiple previous attempts at drug treatment (including several previous episodes of oral methadone treatment).
Illicit-drug use or other illegal activity declined in 67% of the heroin group, compared to 48% in the methadone group. There results were all statistically significant. Serious adverse events were more common in the heroin group but one death in the study occurred in a subject receiving methadone. The results in the (optimised) methadone group in this study were better than had been achieved previously in routine treatment. The heroin group recorded significant improvement in six of the seven subscales while the methadone group improved in two subscales. After adjusting for baseline values, the heroin group improved more than the methadone group in four of the scores (including drug use).
The average age of the 251 people in this study was almost 40. Males accounted for more than 60%. Almost a quarter were of Aboriginal descent and almost three quarters were homeless, living in shelter or a single-occupancy hotel room.
The average number of days in the previous month illicit heroin was used decreased by 80% in the heroin group compared to 56% in the methadone group. Cocaine use remained the same in both groups.
The average duration of injecting drug use was 16.5 years; 94% had been charged during their lifetime for any crime and almost three quarters had committed illegal activities (other than illicitdrug use) in the previous month. More than half had a chronic medical problem and almost 10% were HIV positive.
All five trials considered the same variables (drug use, illegal activities, health, and social adjustment) and showed greater benefit from injectable heroin than oral methadone. The heroin group in the Canadian study showed greater improvements in medical and psychiatric status, economic status, employment and family and social relations.
The average number of previous drug treatments was 11.1 (including 3.2 previous attempts at methadone treatment). The group used illicit drugs on most days of the month before entering the study (heroin 26.9, cocaine powder 5.0, crack cocaine 13.4). Median expenditure on drugs in the month before entering the study was $A1,470. Both groups in the study did well but 88% of the injectable heroin group were retained in dependence treatment compared with 54% in the methadone group.
40 www.hep.org.au
The authors (rightly) recommended that methadone should remain the mainstay of treatment for the majority of patients. However, for a minority of heroin users with very severe problems who have not benefited from a range of previous treatments (including high quality methadone maintenance), injectable heroin appears to be a safe and more effective treatment. The Canadian study was published 12 years and one day after federal Cabinet (at the behest of then Prime Minister John Howard) aborted an Australian heroin trial because this would have “sent the wrong message�.
oral methadone
promotions
Since then 68% of Swiss voters in a national referendum and 63% of federal politicians in the German parliament have voted in support of heroin treatment as an option for the “worst of the worst”. A stable 5% of patients undergoing heroin treatment in Switzerland have required injectable heroin.
The small minority of severely dependent heroin users who require treatment with injectable heroin account for approximately 30% of the crime associated with heroin. It is better for these individuals, their families and communities that they are attracted, retained and benefit from injectable heroin treatment rather than be allowed to continue to create major problems in the community or to be made even worse at great expense to taxpayers in prison. Should Australia conduct a heroin trial? There will be insufficient political support for an Australian heroin trial as long as the heroin shortage continues (bringing with it lower numbers of heroin overdose deaths and lower crime rates). Denmark has decided that the research evidence is strong enough to start this treatment without conducting additional research. That is what Australia should also do, 29 years after this was first officially recommended in Australia (to Premier Neville Wran). Heroin shortages do not last forever. • Alex Wodak is currently the President of the Australian Drug Law Reform Foundation and is a member of several state and national committees. He often works in developing countries to assist efforts to control blood-borne virus infection among injecting drug users.
Image by Alastair Rae, courtesy of flickr.com
Although more expensive than other treatments, economic savings (mainly from reduced crime) are twice the cost of the treatment. No doubt the gnomes of Zurich fully understand that it is more important to invest in cost-effective treatments than to cancel scientific research in order to “send a message to the electorate”.
HALC
legal centre is now able to offer free help with hep C legal issues
HALC is a community legal centre providing free advocacy and advice. Our solicitors understand the needs of people living with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and Health Care Complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.
The Hep Review Edition 68 March 2010 41
my story
Roger’s story: my B and D doubl
I
t was the mid eighties, and registered nurse Roger wasn’t feeling particularly well. Erring on the side of caution, he decided to go for a routine blood test to find out what might be causing his mild flu-like symptoms.
“In December 2003 I was told that I had endstage cirrhosis of the liver and probably had about six months left to live. I was told; my only chance of survival was to have a liver transplant at Royal Prince Alfred Hospital.”
A month later the answer came back. He was told that he had HIV and chronic hep B.
As he was trying to mentally and physically prepare himself for the transplant, Roger had to deal with the effects hep B virus was then wreaking on his body.
“The only thing I was told [about hep B] was that I would have an increased risk of liver cirrhosis and/or cancer in later life.” Although it sounds unusual to be diagnosed with hep B without having any major symptoms, it is in fact the norm. Most people living with chronic hep B do not have any symptoms of infection which means they may feel healthy and completely unaware they are infected. “I really didn’t give it much more thought until 1992 when I became quite ill with Delta Hepatitis [hepatitis D] and was hospitalised for about a week. It took me many weeks to recover from this but again when I did, I didn’t give it much thought.” As Roger recovered from hepatitis D, his health again stabilised. However in 2003, 13 years after his initial diagnosis of chronic hepatitis B, he received some life threatening news.
42 www.hep.org.au
“I spent most of 2004 being very, very sick, and having to work-up for a liver transplant. I had all the classic symptoms of advanced liver disease – weight loss, lethargy, jaundice, ascites, bruising, swollen ankles, depression, and, finally hepatic encephalopathy.“ This was an understandably difficult time for Roger, and he required a full-time carer. Fortunately Roger’s brother was able to take on the role of carer, as Roger prepared himself for the transplant procedure and his shot at making medical history. “I was to be, only, the second person with HIV to have a liver transplant in Australia.” Remarkably, Roger did end up making medical history, but not in the way he first thought as his clinician Dr Greg Dore called it an “amazing
le whammy recovery”, following the introduction of specific antiviral therapy. “I am, apparently, the only person in medical history to recover from a decompensated cirrhosed liver! All in all, I lost about two years of my life to illness.” “But I have now fully recovered and am working full-time once again. I am planning a civil union with my partner of two and a half years which will coincide with my 50th birthday!” Roger advises other people who may be living with hep B or hep C to look after your liver with tender loving care, get plenty of sleep, drink lots of water, avoid all alcohol, and relax and live life to the fullest. “And most importantly, be kind to yourself.” Roger credits being positive and taking these steps as an integral part of his miraculous recovery.
The little book of hep B facts
Image courtesy of Google Images (digitally altered)
feature
Do you know your facts about hep B? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep B Facts, Hepatitis C Council of South Australia.
“I believe that being surrounded by love and support from family and friends had a huge influence on my recovery as does the fact that I meditate daily in the Buddhist tradition.”
• A person is said to have chronic hep B when the infection lasts longer than six months. It does not refer to the level of severity.
• Abridged from the Hepatitis Australia website http://tinyurl.com/yz42e3v
• Chronic hep B develops when the body is unable to get rid of the hep B virus after infection. • 20-30% of people who develop chronic hep B are at risk of serious liver disease. • Globally, over 350 million people are living with chronic hep B. • 30% of the world’s population has been exposed to hep B at some time in their lives. • One million people world-wide, die each year from hep B related complications.
Image by mtungate, courtesy of flickr.com
• In Australia, an estimated 165,000* people are living with chronic hep B. See our previous and following editions of The Hep Review for all 38 hep B facts – or check out the booklet at www. hepccouncilsa.asn.au/resources/downloads/ category/15-resources * this is an updated figure that does not appear in the printed booklet.
The Hep Review Edition 68 March 2010 43
feature
Raising awareness about liver cancer in south western Sydney World Cancer Day is increasingly including a hep B focus says Dr Andrew Penman from Cancer Council NSW.
C
ancer Council NSW took to south west Sydney’s streets on World Cancer Day (the 4th February) as part of its B-Positive Project, providing cancer information and encouraging people to see their doctor to get tested for hep B, a virus that can cause liver cancer. Many people with hep B don’t even know they have the virus as often there are no symptoms. The virus is easily spread and can spread among entire families. South West Sydney is home to many people who were born in countries with higher rates of hep B – a major cause of liver cancer. Research shows cancer rates will hike locally unless action is taken now, which prompted Cancer Council to launch the B-Positive Project in late 2008. The B-Positive Project aims to reverse this trend. Supported by local community groups, councils, and more than 160 doctors, it’s the first pilot project of its kind in Australia to reach out to those infected with chronic hep B. “We are in the midst of a community epidemic of liver cancer caused by hep B,” Dr Penman, Chief Executive Officer of Cancer Council NSW said. “Unfortunately, exposure to hep B is higher in south west Sydney and research shows that local rates will increase further unless action is taken now.”
During World Cancer Day, special information booths were set up in Liverpool, Fairfield and Cabramatta, where residents were offered information in English, Chinese, Vietnamese, and other languages. • Abridged from a joint press release from Cancer Council NSW, Hepatitis Australia and Australasian Society for HIV Medicine (4 Feb 2010).
44 www.hep.org.au
Image by pigeonpoo, courtesy of flickr.com
“The good news is hep B is easily prevented and treatable. This is why we urge the community to speak to their doctors now to safeguard their own and their family’s health,” Dr Penman said.
membership matters You are vital to us — we are here for You MEMBERSHIP RENEWALS FOR 2010 Time marches on…and our 2010 membership year began on 1 March. Thanks to everyone who joined in our annual Early Bird membership promotion and renewed early! Renewals are now due for all categories of membership including Zero fee category for those in financial hardship. Why join or renew? A strong membership enhances our influence and financially assists in maintaining the scope and high standard of our work for the affected communities, particularly our advocacy work on important issues such as care, treatment and prevention services. Membership helps us to help you. What else is in it for you? Benefits include your very own quarterly copy of The Hep Review and our bonus members’ exclusive bulletin Member News, delivered direct to your door or PO box, the chance to have a vote on the association’s policy and direction, and community member scholarships to attend hepatitis C-related conferences. How to join or renew? It’s easy, whether by mail, fax or the secure membership form on our website www.hep.org.au MasterCard, Visa, cheques and Australian Money Orders are all welcome. If you are an existing professional or organisational member, please quote your invoice number to ensure correct payment allocation. You can read about the lucky winners of our Early Bird prize draw in the March edition of Member News, winging its way to you right now. ALSO IN YOUR MARCH EDITION OF MEMBER NEWS, WATCH OUT FOR: • an update on our Hep Connect peer support service • call for applications for two community membership scholarships to attend the 7th Australasian Viral Hepatitis Conference in Melbourne in September 2010
A historical perspective – 1994 The appointment of the first NSW Coordinator has been long overdue and obviously much more is needed in dealing with the needs of people affected by HCV. Still, this development represents the first positive recognition of our predicament by the NSW government; and with the opening of our office, we can set our sights more firmly on making positive gains.
this has been happening in the provision of medical care (isolation) and dental care (refusal). Such discrimination is unlawful and complaints can be made to the Commonwealth Disability Commissioner. Most States and Territories have antidiscrimination laws which also cover disability and complaints can be made at this level.
We were very busy last year writing to federal and state politicians, establishing links with journalists and utilising press coverage. We submitted three proposals for federal funding, none of which were successful. Consequently, we will continue to press the federal government for the creation of a federal secretariat or Coordinator and federal funding.
Correspondence has been received from people with hep C in prisons seeking information about the illness. There is little information about hep C in prisons and access to interferon is even more limited. There are some educational programs in respect of HIV/AIDS but it is not known whether these programs extend to hep C. We feel that the introduction of non-custodial sentencing options for offenders with drug injecting histories, and the expansion of prison drug rehabilitation programs would be appropriate and sensible strategies for the prevention of hep C transmission in prisons.
Some members have reported cases of discrimination on the grounds of their hep C status. Particularly,
• Taken from Australian Hepatitis C Support Group newsletter, Edition 8, March 1994.
The Hep Review Edition 68 March 2010 45
hep C bookmarks O
ur hep C bookmarks have proved handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • taking them to your local library • taking them to your local community centre. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990). • Hepatitis NSW
Hepatitis C is not classified as a sexually transmitted disease The virus is transmitted when infected blood from one person gets into the bloodstream of someone else For more information about how hep C is transmitted, visit www.hepatitisc.org.au or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the liver Hep C is transmitted when infected blood from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker does not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
www.hepatitisc.org.au
or call the
Hep C Helpline
(see over)
46 www.hep.org.au
Hepatitis C is hard to catch. It is not transmitted by touching someone who has it or drinking out of the same cup or using the same knives and forks. It is transmitted when infected blood from one person gets into the bloodstream of someone else. For more information about hepatitis C visit www.hepatitisc.org.au or call the Hep C Helpline (see over)
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The Hep Review Edition 68 March 2010 47
research updates Coffee good for people with hep C related cirrhosis
The impact of hep B in Australia
USA – This study, led by Neal Freedman of the US National Cancer Institute, found that people with hep C related cirrhosis who did not respond to treatment benefited from increased coffee intake. No effect on liver was observed in patients who drank black or green tea.
Australia – Two academics from The Australian National University warn that the number of people with chronic hep B in Australia is set to increase markedly within the next 10 years.
This study included 766 participants enrolled in the Hepatitis C Antiviral Long-Term Treatment against Cirrhosis (HALT-C) trial who had hep Crelated cirrhosis and failed to respond to standard treatment of the anti-viral drugs peginterferon and ribavirin. Participants were seen every three months during the study period to assess clinical outcomes. Liver biopsies were also taken at 1.5 and 3.5 five years to determine the progression of liver disease. “Results from our study suggest that patients with high coffee intake had a lower risk of disease progression,” said Freedman. Coffee intake is associated with lower rates of liver disease progression in chronic hepatitis C. Freedman ND, et al. Hepatology. 2009;50(5): 1360-1369. • Abridged from http://tinyurl.com/ykjbmc3 (21 Oct 2009).
In a recent seminar, Professor Jim Butler and Dr Rosemary Korda discussed the current economic and epidemiological burden of chronic hep B and the projected mortality, morbidity and direct economic costs to Australia. They argued that a national strategy involving a coordinated approach to screening, vaccination, and treatment of the disease is warranted. “There appears to be a lack of appreciation of the potential benefits of identifying and treating those infected. Although Australia has adopted universal hepatitis B vaccination for infants, there are many people already infected for whom vaccination offers no benefit,” said Dr Korda. “Immigration patterns, the ageing of people with hep B and the small number of people receiving therapy together imply that the long-term pathology of hep B can be expected to become increasingly evident over the next decade.” The seminar, held at ANU on 23 October 2009, coincided with the release of a report, The Impact of Chronic Hepatitis B in Australia: Projecting Mortality, Morbidity and Economic Impact, recently released by the Australian Centre for Economic Research on Health (ACERH). • Abridged from Zikkir Health News http:// tinyurl.com/y9twtxz (23 Oct 2009). The report is downloadable from http://tinyurl. com/y9e72un
In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need. Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. They help broaden our overall knowledge and develop consensus opinion on a particular research topic. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers).
48 www.hep.org.au
research updates Recovery from hep C treatments Australia – A recent study conducted by Dr Max Hopwood from the National Centre in HIV Social Research, UNSW, explored a range of outcomes among people who had completed treatments for hep C. Participants in this qualitative study had finished treatment at least six months before being interviewed and included those for whom treatment had cleared hep C infection and those for whom it had not. For some participants, clearing hep C infection resulted in renewed energy, significant improvements in mood and relief from worrying about the future health and social consequences of living with hep C. However other participants reported difficulty noticing any improvements in their health following treatment. Some perceived that the side effects of treatment, including fatigue and ‘brain-fog’, had persisted for lengthy periods following completion of the regimen, and several people reported that new health problems had emerged shortly after treatment. Participants said that prior to commencing treatment informed consent procedures had not addressed the post-treatment period and participants were not forewarned of the possibility of ongoing side effects or ill health after treatment. Conversely, some participants said that they were given unrealistic expectations about increased energy levels and improved health and quality of life from clearing infection.
The end of treatment was a time when participants’ demand for information was high. According to study participants, little or no information was provided by specialists about what people could expect in the months after treatment, and what to do and where to go if they experienced ongoing health problems. The clinics and specialists’ private practices reportedly had no treatment termination protocols, and access to clinic staff, support and resources were usually severed after treatment had stopped. In light of such outcomes, the notion of treatment success was contested by some participants in this study: clearing infection did not necessarily translate to feeling well. On the contrary, some reported feeling worse than before treatment. Re-adjustment to life after treatment was often difficult and exacerbated by persistent symptoms and no end of treatment referrals, support, information or advice. A recommendation arising from this study is to establish a comprehensive programme of referrals, information provision, social support and avenues for ongoing medical assistance for people who experience persistent health problems or who need help in re-adjusting to life after treatment. • Hopwood, M. (2009). Recovery from hepatitis C treatments (Monograph 6/2009). National Centre in HIV Social Research, The University of New South Wales.
Vitamin D has benefits in chronic hep C infection Israel – Supplementing combination treatment with a daily dose of vitamin D might increase virologic response rates, according to results of a late-breaking abstract reported at The Liver Meeting 2009, the 60th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD). “Vitamin D is a potent immunomodulator whose impact on virologic response rates of interferonbased treatment of chronic HCV [hepatitis C] is unknown,” lead investigator Dr Saif M. Abu-
Mouch, from the Department of Hepatology, Hillel Yaffe Medical Center, in Hadera, Israel, and colleagues note in their abstract. “This preliminary study confirms the benefit of adding vitamin D to conventional antiviral therapy in patients with chronic HCV,” Dr AbuMouch told the meeting. • By Megan Brooks. Abridged from Medscape http://tinyurl.com/y8ztlyw (5 Nov 2009)
The Hep Review Edition 68 March 2010 49
research updates Metabolic syndrome hikes hep C mortality
Hep C education and support in Australian prisons
USA – Excess body weight and hypertension both significantly heightened the risk of liverrelated mortality in people with hep C, according to the third US National Health and Nutrition Examination Survey, reported Dr Zobair Younossi, of Inova Health System.
Australia – Rates of hep C infection are up to 60 times higher in correctional facilities than in the general population, yet prisoners have limited access to many methods of blood-borne virus prevention. The aim of this study was therefore to explore the efficiency of hep C education and support services available in custodial settings, from the perspective of health educators and policy makers.
Those two factors as well as the third component of metabolic syndrome (type 2 diabetes) also made death more likely during the study period, said Dr Younossi. Out of more than 31,000 NHANES participants, the researchers identified 264 with hep C and 13,004 without liver disease who could serve as controls. The researchers found that people with hep C were more likely than people in control groups to have insulin resistance and were dramatically more likely to smoke. A diagnosis of type 2 diabetes was moderately more common among cases as well. Dr Younossi said that patients with any of the components of metabolic syndrome should be treated for them. • By John Gever. Abridged from http://tinyurl. com/dm8v54 (24 April 2009).
Semi-structured interviews were conducted with 23 health professionals, from all states and territories of Australia, who were involved in the management or provision of hep C education or support to prisoners. Interviewee perceptions indicated that the delivery of hep C education and support services in Australian custodial settings is marred by inconsistency. However, both education programs and psychological support services could be developed by external agencies intending to reduce the impact of hep C within the prison system. • By Jade Dyer and Lyn Tolliday. Abridged from Health Promotion Journal of Australia 2009; 20:37-41
How hep C remains in body UK – Researchers at the University of Leeds have discovered a previously unknown mechanism that allows hep C to remain in the body. A study published in the Proceedings of the National Academy of Sciences shows that the virus blocks the actions of a specific ion channel in the cell membrane that would usually trigger apoptosis – the cell’s self-destruct program – and in doing so, prevents itself from being eliminated. Apoptosis occurs naturally in the body to allow the replacement of worn-out cells. This can happen when the cell activates a specific ion channel (which acts as a pore in the cell membrane) causing it to open and allow out potassium ions.
50 www.hep.org.au
The research team discovered that a hep C protein, known as NS5A, is able to block the activation of this ion channel in liver cells, enabling these cells to resist cell death for longer. “For a virus to persist in the body over a long time, it has to find a way of manipulating the host cell so that it becomes resistant to apoptosis,” says lead researcher Professor Mark Harris of the University’s Faculty of Biological Sciences. The research team believes that continued research may offer a potential target for drug development, perhaps through combination therapy. • Abridged from http://tinyurl.com/ydkpfkb (19 Aug 2009).
research updates Hep C drug fights virus in new way USA – A drug that targets hep C in an entirely new way was highly effective at suppressing the virus in chimpanzees and kept working for several weeks after the treatment stopped, US researchers said. “The hope is that the drug, made by Danish company Santaris Pharma AS under the experimental name SPC3649, could replace more toxic drugs as part of a cocktail to fight hep C,” said Robert Lanford of the Southwest Foundation for Biomedical Research in San Antonio, Texas. “As the study unfolded, just how well the drug worked became amazing to us,” Lanford said in a telephone interview. In hepatitis C, the virus uses microRNA 122, active in hepatocytes, to replicate. The Santaris drug is designed to block this process. “This molecule is so stable that even after we stopped delivering it, it continued to knock down the virus.” In chimps, it showed no toxic side effects. Lanford said the findings were so strong that the company has begun human clinical trials. • By Julie Steenhuysen. Abridged from http:// tinyurl.com/yzqhgp2 (3 Dec 2009).
Hep C in kids goes undetected Australia – While almost all pregnant women being treated for drug dependence in Australia receive a test to detect hep C, research shows a followup test to determine its transmissibility was often missed. Mums carrying the virus also show declining rates of attendance at necessary check-ups after they give birth, says Dr Ralph Nanan who is Professor of Paediatrics at the University of Sydney. “Screening for (Hepatitis C virus) HCV infection in the high-risk population of pregnant women on methadone maintenance treatment and their infants is inadequate,” said Dr Nanan in a paper published in the Medical Journal of Australia. “This could lead to a significant under-detection of active HCV infection in this high-risk population, and their infants. “Current screening guidelines may need to be revised. Although the prevalence of HCV infection in children in Australia is unknown, it has been estimated that 75 to 100 new cases of vertically acquired (mum to child) hep C occur each year,” he said. • Abridged from http://tinyurl.com/yd3stjc (15 Nov 2009).
Soft drinks cause liver damage Israel – A new study reveals people who drink more than one litre of sweetened beverages a day have a five times greater risk of developing fatty liver. “In the long term, this contributes to more diabetes and heart disease,” warns Dr Nimer Assy, from the Ziv Medical Center in Haifa, Israel. While known culprits like sweetened carbonated soda are on the list of “no-nos,” natural and freshly squeezed fruit juices appear there, too. The ingredient that causes the damage is a fruit sugar called fructose, which is highly absorbable in the liver. It does not affect insulin production and goes straight to the liver where it is converted to fat. Fructose ups the chances that you will suffer from a fatty liver, which can lead to cirrhosis of the liver and liver cancer, Assy said.
To reap optimal benefits, Assy suggests eating the fruit whole. “The natural orange has fibres and prevents fructose from being absorbed in the liver,” he explains. Assy plans to conduct a more extensive study of the health effects of artificially sweetened drinks and he suspects that his findings may not be to the taste of the world’s beverage industry. Soft drink consumption linked with fatty liver independently by metabolic syndrome diagnosis. Assy N, et al. Journal of Hepatology April 2009. (Vol. 50, Page S354) • Abridged from http://tinyurl.com/lbu89u (9 Aug 2009).
The Hep Review Edition 68 March 2010 51
research updates Why hep B hits men harder than women
Viral load predicts hep C liver transplant outcome
China – Scientists in China are reporting discovery of unusual liver proteins, found only in males, that may help explain the long-standing mystery of why chronic hep B discriminates, hitting men harder than women.
Austria – Viral load is an important factor and can predict the outcome after liver transplantation, for both recurrence of hep C and patient survival, Austrian researchers stated at the 60th Annual Meeting of the American Association for the Study of Liver Diseases.
Shuhan Sun and colleagues note that chronic hep B seems to progress and cause liver damage faster in men, with men the main victims of the most serious complications, cirrhosis and liver cancer. They also report that men are six times more likely than women to develop a chronic form of the disease. In experiments with laboratory mice, the scientists found abnormal forms of apolipoprotein A-I (Apo A-I), a protein involved in fighting inflammation, in the livers of infected male mice but not infected females. They then identified abnormal forms of these Apo A-I proteins in blood of men infected with hep B, but not in women. In addition to explaining the gender differences, the proteins may provide important markers for tracking the progression of hep B, they suggest.
After liver transplant, recurrent HCV infection is ubiquitous and leads to graft loss and retransplantation for 10% to 20% of liver transplant recipients. Donor, recipient, and viral parameters are the risk factors associated with HCV recurrence. The study included data from 129 patients who received liver transplants due to hep C cirrhosis between 1980 and 2006 at the Medical University of Innsbruck and, who survived more than six months, and had histologically proven recurrent hep C infection. Viral Load Predicts Outcome of Hepatitis C Patients After Liver Transplantation. Graziadei I, et al. Medical University of Innsbruck, Austria. • By Cheryl Lathrop. Abridged from http:// tinyurl.com/y94r4p3 (2 Nov 2009).
• Abridged from http://tinyurl.com/y8qz4yf (24 Nov 2009).
Survival lower in women after hep C liver transplant USA – Women undergoing liver transplant as a result of hep C show poorer long-term survival rates and more frequent failure of the donor liver, compared with male recipients, researchers report. The study conducted by Dr Jennifer Lai, of the University of California San Francisco and colleagues, included all adult liver transplant recipients with HCV-related liver disease at a network of four major centres from March 2002 to December 2007. She suggested several potential explanations for the higher risks that women appeared to run:
52 www.hep.org.au
Differential effects of ageing in women compared with men. Gender mismatch between donors and recipients – these were more common with female versus male recipients in the study. Renal impairment prior to transplant, also more likely to occur with women than men in the sample. • By John Gever. Abridged from http://tinyurl. com/y8lfmpd (2 Nov 2009).
research updates promotions Assessing community support for harm reduction services Australia – Measures of support for sensitive issues can be influenced by the way survey questions are asked. Given this, a recent study hypothesised that surveys which assess community support for harm reduction services will yield divergent results depending on the language used and information contained within the survey items.
Measures of community support for harm reduction services can be effectively manipulated through survey design. This has significant implications for government policy regarding harm reduction approaches to illicit drug use. Care is needed when assessing measures of community support for harm reduction services, and when interpreting media reports of findings from surveys of illicit drug use.
A convenience sample of 260 university students from Sydney were surveyed during late 2008 about their support for six harm reduction services. The results confirmed the study hypothesis. Overall, support for harm reduction services was dependent on which survey participants received.
Assessing community support for harm reduction services: Comparing two measures. Hopwood M, et al. Harm Reduction 2009: IHRA’s 20th International Conference presentation abstract.
To organise a ti
me to speak to
• Abridged from IHRA http://tinyurl.com/ y9uts9c
a
volunteer phon e 9332 1599 (Syd ney) 1800 803 990 (F reecall NSW reg ion
al)
The Hep Review Edition 68 March 2010 53
interferon-based treatment Interferon-based treatment
partner). Female partners of men undergoing treatment must not be pregnant.
Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily.
Age: People must be aged 18 years or older.
Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly anti-HCV positive and HCV RNA positive). Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each
Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information). Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests must be performed at the same laboratory using the same type of test kit. PCR quantitative
tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment. Note that some people with genotype 2 or 3 may still require biopsy to determine whether
CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peginterferon monotherapy if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
54 www.hep.org.au
complementary medicine they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring. See “Monitoring Points”, page 54. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access interferonbased therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline (see page 56). NSW treatment centres
Complementary medicine Good results have been reported by some people using complementary therapies, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see Edition 24, page 8). A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see Edition 45, page 9).
Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy.
Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to.
Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre.
• Will they consult with your GP about your hep C?
In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).
• Will they consider all relevant diagnostic testing?
• Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hep C? • What are the side effects? • Are they a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hep C. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 56) for more information and the contact details of relevant professional associations. • Hepatitis NSW To access any of the above mentioned articles, please phone the Hepatitis Helpline.
The Hep Review Edition 68 March 2010 55
support and information services Hepatitis Helpline For free, confidential and non-judgmental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers).
Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.
56 www.hep.org.au
Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private.
Community health centres Community health and neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community health centres. Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes some information resources in various languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au
Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW).
support and information services Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning 10.30–11 am, (Eastern Standard Time). Go to 3CR’s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Coffs Coast hep C support group A peer support group for peple living with or receiving treatment for hep C. Meets every 3rd Monday, 5-7pm at the Coffs Harbour Community Centre. For more information contact Janet Urquhart, Social Worker, Coffs Harbour Health Campus on 6656 7846. Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For more information please contact Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For information please contact Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information please contact Vince on 4734 3466.
Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For information please contact Lynelle Wood on 0418 116 749 or Jana Vanderjaght on 0418 207 939. Parramatta support group A support group for people living with hep C, including those in treatment. From 7 pm to 8.30 pm, first Thursday of every month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 162 Marsden St, Parramatta. There is no parking on site. It is a 10-minute walk from Parramatta station. For information please contact Susan on 9845 5627 or Jamie on 9845 7419. Sydney Central support group A chance for people living with hep C to meet others and get some support. We meet on the 3rd Tuesday of each month, from 6–8 pm at Hepatitis NSW, Level 1, 349 Crown Street (corner of Crown and Albion Streets), Surry Hills. Food and drink provided. For more information please call the Hepatitis Helpline on 9332 1599.
Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. It offers free and confidential services to affected people and their families and carers. For more information contact Traids on 9515 5030 or 1800 108 098. Westmead hep C information night Our information nights are organised for people with hep C, families, friends and interested others. Parking is available at the hospital but you will need $6 in coins. Alternatively, it is about a ten-minute walk from Westmead station. Go to the main entrance of the hospital and ask for directions at reception, or look for our signs. There is no charge for the information night and people from any area are most welcome. For information please contact Susan on 9845 5627.
Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For more information please phone 6620 7539.
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noticeboard promotions The most precious gift
Upcoming events
We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time.
16 March, 20 April, 18 May: Level 1, 349 Crown St, Surry Hills. For more info, please phone 9332 1599. Conferences: National Centre HIV Social Research: 11th Social Research Conference on HIV, Hepatitis C and Related Diseases, 8-9 April 2010, Sydney.
It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Lifegift, the NSW/ACT network that coordinates organ donation.
Please phone 02 9229 4003.
Australasian Viral Hepatitis Conference 2010. The 7th Australasian Viral Hepatitis Conference is being held in Melbourne from 6-8 September 2010. Online abstract submission is also now available and submissions close on 23 April; please visit the conference website at www. hepatitis.org.au
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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for The Hep Review and Transmission Magazine. • proofreading for The Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker. Want to find out more? Please phone the Hepatitis Helpline for more information (see page 3).
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If you wish to make a complaint about our products or services, please visit our website for more information: about-us/complaintsand-disputes-handling. Or see page three for our phone number and postal address.
Paediatric viral hepatitis clinic Hepatitis C and hepatitis B occur among children in Australia although exact numbers are unknown. Children affected usually feel well and often are unaware of their infection. The Paediatric Viral Hepatitis Clinic at Westmead provides early diagnosis, monitoring and, in some cases, treatment of children with these infections. Assessment and regular follow up is essential to provide optimal care for children with hep B or C to reduce the risk of significant liver disease in later life. For more information, contact Janine Sawyer at The Children’s Hospital Westmead on 9845 3989 or by email: janines1@chw.edu.au
membership form / renewal / tax invoice An invitation to join or rejoin Hepatitis NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About us We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to work in the best interests of and provide services for people affected by viral hepatitis in NSW.
1.
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people affected by hepatitis or other interested people
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Hepatitis NSW is overseen by a voluntary board of governance, mainly made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and financial support of our members.
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Hepatitis NSW respects and upholds your right to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information.
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Membership Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) are required to renew their memberships annually to retain member benefits.
For NSW health care workers One of our services is the NSW Hepatitis Helpline, an information and support phone line whose staff are able to refer callers to a range of services and health care workers in their local area (within NSW only). If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular hepatitis information. The Hep Review, the most widely-read hepatitis publication in NSW, targeting both people affected by hepatitis C and health care workers, is provided free to all members of Hepatitis NSW. If your service has clients or patients who may be interested in The Hep Review please indicate the number of extra copies you would like to receive.
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The Hep Review Edition 68 March 2010 59
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4. Contact with our office We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office.
All Hepatitis NSW membership fees are GST exempt. For health professionals, our membership fees may be tax deductible. If paying by cheque or money order, please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form to Hepatitis NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt ? If you would like a receipt for your payment, please tick here 9. Declaration – I accept the objects and rules of Hepatitis NSW and apply for association membership / renewal. I agree to my personal contact details being held by Hepatitis NSW and used in accordance with the association’s privacy policy. Signed:
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