Hep Review ED60 by HepatitisNSW

The Hep C Review Autumn Issue

March 2008

Edition 60

Milestone, jam-packed 60th edition Federal Labor talks hep C Donated livers kept alive for longer Cannabis use linked to liver damage Third Hep C Review readership survey Good signs for US harm reduction policy

160 million Chinese living with hep B or C DIY piercing kits criticised as irresponsible Australian harm reduction in Iranian prisons The Hep C Reviewmedicine Ed60 March 2008 Latest news on Aussie complementary trial 1

editor’s intro

elcome to Edition 60, a landmark edition of The Hep C Review that marks our 15th year of production. It’s so rewarding to have watched the magazine develop and it’s exciting to think about how it might continue to improve over the coming years. We have always tried to provide an informative and interesting read for our diverse range of readers. This is guided by our readership surveys. Within this edition, you’ll find our third such readership survey. It is designed to be anonymous (we don’t ask for your name or contact details) and easy to complete. Please take the 5-10 minutes to fill it out and send it back to us. We really want to hear what you think. This is also our first edition to be printed on a recycled paper product. This move is part of the Council’s ongoing commitment to our community and the environment. Aside from these big-picture changes and initiatives, this edition is packed with interesting articles. News items that caught my eye include those about the astounding level of hep C and hep B in China, and the DIY piercing kits. It’s good to get an update on Ses Salmond’s HEP573 complementary medicine trial. Other interesting articles include one on roadside dentists in Pakistan, Australian sponsored harm reduction projects within Iranian prisons and one on how researchers can keep a liver alive outside the body - this specifically, will have a positive impact on increasing the number of organs available for transplants.

Cover image by ‘Inti’ via www.flickr.com

Paul Harvey, Editor

www.hepatitisc.org.au

Activities 2008 The Council is gearing up for a full and productive year, building on the successes and gains made in previous years. Core activities remain ongoing. These include services such as the Hep C Helpline, Prisons Hep C Helpline, drop-in events and our volunteer-based peer support service, Hep Connect. Our information and resources work will continue to produce and distribute printed and electronic information resources including this magazine, The Hep C Review. We shall maintain the ever-growing online peer discussion forum, hepcaustralasia. Education and development services, including our C-een & Heard positive speakers’ service, will continue their vital role in the health and other hep C related workforces. Likewise, our advocacy work will continue unabated as we continually seek to improve the quality of the lives of our communities of interest. HepLink, the capacity-building interagency for health and other workers, will continue to grow. Major new activities for 2008 will include: • leading the NSW contribution into World Hepatitis Day (19 May) and Hepatitis Awareness Week (19-23 May). For the first time we will see a globally coordinated, multimedia campaign which raises awareness of heps B and C. • a new capacity-building pilot project, assisting two colleague agencies to develop systems and processes that guide their work and enable them to better meet the needs of people with hep C who use their services • a new, easy-read, regular publication developed for, and with the involvement of, priority populations affected by hep C

Welcome to Edition 60, and fifteen years of The Hep C Review!

Council keyhole

• a new capacity-building project that will work with populations of people adversely affected by hep C who are prioritised within the NSW Hepatitis C Strategy 2007-2009 • a complete overhaul and redesign of our website www.hepatitisc.org.au to enable interactive, online multimedia education services and to provide improved, free, easy access to a wide range of information resources, links, answers to FAQs, research and policy reports and government responses to the hepatitis C epidemic. HCCNSW

acknowledgements Calling all members

Hep C Review editor: Paul Harvey Editorial Committee: Tim Baxter Teresa Clonan Megan Gayford Paul Harvey Stuart Loveday Tom Pryce Emily Seaman Thuy Van Hoang

Look inside for your special Membership Update (p45). Our 2008 membership year begins on 1 March - we look forward to receiving your applications or renewals. It’s now easier than ever - join or renew securely online... www.hepatitisc.org.au Or use the form at the back of this magazine.

HCR medical & research advisors: Dr David Baker Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Geoff McCaughan Dr Cathy Pell Assoc Prof Carla Treloar Dr Ingrid van Beek Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proof reading: Prue Astill Sarah Bowman Judith Campbell Samantha Edmonds Margaret Hancock Gerard Newham Adrian Rigg Maureen Steele Cindy Tucker Bill Whelan

Seeking your personal story Personal stories provide balance to our information articles. They are often written by people with hep C, but also by family members or friends. The experience of health care workers would be equally valuable to many readers. Please consider writing in with your story. Published articles attract a $50 payment. Author’s name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Articles should be between 400800 words. Publication of submitted articles is at the discretion of the Editor and Editorial Committee. Articles considered unnecessarily inflammatory or vilifying will not be published. We’re really looking forward to receiving your articles. •

MARLTON comic: Andrew Marlton

The Hepatitis C Council of NSW is an independent, community-based, non-profit, membership organisation. We are funded by the NSW Health Department. phone: 02 9332 1853 fax: 02 9332 1730 email: hccnsw@hepatitisc.org.au website: www.hepatitisc.org.au postal address: PO Box 432 DARLINGHURST NSW 1300 AUSTRALIA Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Aside from HCCNSW editorial comment, views expressed in this magazine or flyers enclosed with it, are not necessarily those of the Hepatitis C Council of NSW. Neither are such views necessarily those of our funding body. Contributions to The Hep C Review are welcomed and are subject to editing for spacing and clarity. Contributors should supply their contact details - although we do not publish such details unless asked. We’re happy for people to reprint information from this magazine provided that The Hep C Review and any particular author/s where such exist are credited, and the edition number and date are highlighted. This permission does not apply to graphics or cartoons. Many of these are not subject to public domain and must not be reprinted without permission of original artists/publishers. If you have any doubts, please contact us. ISSN 1440 - 7884

The Hep C Review

Ed60

March 2008

contents Letters

My internet journey towards acceptance

A failed report

A shock but no surprise

Following up

My hep C treatment and me

Dancing ‘round treatment

News Europe approves re-treatment for those who didn’t clear HCV

New drug could benefit damaged livers

China tops 120 million people living with chronic hep B

Close to 40 million Chinese living with chronic hep C

Last ride for Evel Knievel

Injecting drug use infiltrates Africa

Woman sues, blaming dental implants

DIY piercing kits available over the counter and online

Scottish social workers to raise hep C awareness 9

Promotions Community social event

Centre for Digestive Diseases trial

Genetic hep C factors study

New hep C treatment resources

Support people’s support needs study

HepConnect (peer support)

HALC legal centre

Online and connected

Hep C bookmarks

HIV & hep C positive? (coinfection resource)

Hep C & employment research recruitment

Complementary health regulations adopted in NSW Tablets linked to liver deaths WizzWize goes live

10 10 10

Research updates Global estimates of HCV prevalence among people who inject drugs

Staff changes at the Hep C Council NSW

Cannabis use increases risk of liver fibrosis

Combination therapy for 16 or 24 weeks in people with genotypes 2-3

Hep C virus found to spread directly from cell to cell

New upper limit defined for normal ALT in young Australian men

Opinion What does a Rudd government mean for drug policy?

Features HEP573 - a complementary medicine trial

Roadside dentists pose blood-borne virus threat 14 Good signs for US harm reduction policy

Impact of hep B on quality of life

Hep C treatment for people moving in and out of custody

Tattooing in prisons - not such a pretty picture

Hepatitis B - a call for wider action

Eltrombopag to help people with cirrhosis access treatment

Shorter legs linked to troubled livers

Identifying the needs of people in Australia living with hep B

Hep C treatment barriers for people who inject 53

Federal Labor talks hep C

Regular features

Review of hep C care and treatment services in NSW

Device keeps organs alive outside the body

The Hep C Review readership survey (pull out) 29 Preventing blood-borne viral infections in Iran

DIY piercing - a big mistake

Transplant teen takes on donor’s immune system 40 Mid-life recovery

My story From Africa to Aotearoa - my hep C journey

www.hepatitisc.org.au

Council keyhole - Activities 2008

Harm reduction poster

Hello Hep C Helpline - HIV/HCV coinfection

Membership matters

Conference update

Interferon-based treatment

Complementary therapies

Support / info services

Noticeboard 58 Membership form / renewal / tax invoice

letters A failed report

Following up

I feel it is important to comment on Bronwyn Bishop’s Winnable War on Drugs report (ED59 p32). The report is alarming on so many levels that it is difficult to know where to start. However, one point among many causes me great alarm and is indicative of the lack of professionalism with which this inquiry was conducted.

Having told my story seven years ago, I thought I would give you an update.

Mrs Bishop recommends a review of the Needle and Syringe Program (NSP), including community support for it. It is alarming that this seven-month inquiry did not discover key NSP information already collected by the Australian Institute of Health and Welfare in the National Drug Strategy Household Survey (NDSHS). In 1998, 2001 and 2004, using a random sample of Australian householders, the NDSHS asked about people’s support for various interventions, including NSP. This data was hardly new information. Although the question regarding NSPs in the NDSHS could benefit from re-wording, over 50 percent of the Australians sampled showed support for NSPs. When the question of support for NSPs is accompanied by some information about what a NSP is, and what it aims to do, support increases to over 80 percent (surveys auspiced by NSW Health). Again, it is alarming the inquiry was ignorant of these data. Their error diminishes the demonstrated, positive impact that NSPs have had on the Australian experience of blood-borne viruses and helps perpetuate the myth that there is wide-spread community opposition to NSPs. It is important that the NSP sector and policy makers do not fall silent in the face of such scaremongering. We should be able to promote the benefits of NSPs and have faith that the Australian community will receive and understand these messages (as the evidence suggests). For a review of evidence about community support for NSP, see Treloar C, Fraser S. ‘Public opinion on NSPs: avoiding assumptions for policy and practice’. Drug and Alcohol Review 2007; 26(4): 355-361. •

Carla Treloar, National Centre in HIV Social Research, University of NSW.

To start at the beginning, in 1989 I was in a head-on car collision and rushed to hospital with major injuries. These included a ruptured bowel and liver, broken pelvis, broken wrist and fractured right femur. Fortunately I had no back or head injuries. I spent close to four weeks in intensive care and after my release from there, I spent four months in hospital and rehabilitation. Recovery has been very slow and, unfortunately, I’ve been left with a right leg one inch shorter than my left. For the next 11 years, I battled on as us mothers do (I have four children). At times I was becoming extremely tired and overheating for no reason. Then in 2000 I received a phone call from my GP saying I’d been recalled by the blood bank to have a blood test done, concerning hepatitis C. I went along quite happy and had the test done. However the results were not quite what I’d hoped for. As a result of a blood transfusion while in intensive care, I was now hep C positive. Not content with that diagnosis, the blood test also showed that I had haemochromotosis. My liver was overloaded with iron. I had venesections (bleedings) done frequently, the hospital taking about a pint of blood each time until my iron levels were back to normal. After this I started on the interferon ribavirin treatment for my hep C having to put up with all the side effects - the worst was the terrible itch especially at night. The combination treatment worked well and thank God I’m now free of the virus. I lead a perfectly normal life now at the age of 75, I feel pleased to have recovered so well. I would like to thank The Hep C Review magazine for all the interesting articles, especially the latest research news of the virus. •

Jean, NSW. Jean’s story featured in ED28 p19 and ED29 p12.

The Hep C Review

Ed60

March 2008

news Europe approves re-treatment for those who didn’t clear HCV USA - The European Commission has approved Schering Plough’s 48-week standard-dose pegylated combination treatment for re-treating people whose prior treatment did not clear their hep C. This is irrespective of whether prior treatment used was either pegylated or non-pegylated combination treatment or monotherapy. “This approval is a new option for the large number of people who failed prior therapy because it gives them a second chance at success,” said Nadine Piorkowsky, President of the European Liver Patient Association (ELPA). The approval is based on results from the EPIC3 study in which 1,336 people with moderate to severe fibrosis, or cirrhosis who failed previous treatment, were re-treated with combination treatment. In this study, 57 percent of people who had undetectable virus at week 12 went on to clear their hep C (sustained virological response or SVR) with a 48-week course of therapy. Approximately 37 percent of patients in the overall study had undetectable virus at week 12. Overall, 23 percent of patients in the study achieved SVR. Based on these findings, treatment specialists can now identify people in this hard-to-treat population who are suitable for re-treatment and are most likely to achieve a sustained response, suggested Dr Thierry Poynard, professor of medicine, University of Paris VI, Hospital PitieSalpetriere, Paris, and a lead investigator of the study. • Abridged from Schering Plough press release via www.docguide.com via www. hcvadvocate.org We hope that the Australian Government will follow suit and open up access to retreatment. We don’t believe this would place any significant amount of strain on our national health care budget. ED 6

www.hepatitisc.org.au

New drug could benefit damaged livers UK - A drug that reverses severe liver damage could be used to treat disease in heavy drinkers who find it impossible to give up alcohol. Scientists developed the drug after discovering a way to prevent the formation of excessive scar tissue caused by cirrhosis, hepatitis and other medical conditions. The drug, a peptide (involved in the way amino acids are linked to form proteins), not only slowed progression of the disease but, surprisingly, also reversed the damage to the liver. The drug could have a profound impact on public health if it is proven to work in wider clinical trials. Liver disease is the fifth largest killer in Britain, with cirrhosis alone claiming the lives of around 3,000 people each year. The liver is one of the body’s most resilient organs and is the only one capable of regenerating after damage or injury. But excessive alcohol or hepatitis triggers the growth of fibrous scar tissue inside the liver which eventually destroys its ability to carry out crucial tasks such as combating infection and breaking down toxins. Researchers led by Dr Martina Buck at the University of California, San Diego School of Medicine, found that liver damage caused a specific group of cells known as hepatic stellate cells to churn out large amounts of collagen, causing excessive scarring. They found that the cells only overproduced collagen in response to a signal carried by a protein in the body called ribosomal kinase (RSK). The scientists reasoned that if they could block the RSK signal they might be able to halt liver disease in its tracks. They revealed that as well as blocking the formation of scar tissue in the liver, the drug was also killing off the overactive liver cells, allowing the organ to heal. “Our latest finding proves we can actually reverse the damage,” said Buck. • Abridged from The Guardian, 27 December 2007 via www.dailydose.net

China tops 120 million people living with chronic hep B China - Of the 700 million people in China who have come into contact with the hep B virus, at least 120 million now have chronic hep B, stated a senior health official. Hao Yang, deputy director of the Ministry of Health’s disease control and prevention bureau, revealed the figure at a ceremony unveiling a free hep B vaccination project for 320,000 primary school students in northwest China’s Qinghai Province. “This disease is highly preventable with efficient and safe hep B vaccine available since 1982,” he told China Daily. Since 2002, China has added the vaccine to its routine immunisation programs, under which the government foots the bill for vacations for all newborn babies. In China, 40 percent of all infections are motherto-child, according to Samuel So, director of the Asian Liver Centre at Stanford University. Unfortunately, very few people are aware that a vaccine at birth is likely to stop the baby contracting the virus. “The vaccine is the most cost-efficient and effective way to curb the epidemic,” said Wang Zhao, vice-president of China Foundation for Hepatitis Prevention and Control, which helped raise the A$1.13 million funding for the project. “Starting with children, the vaccine project is a step forward to help the nation finally shake off its notoriety as the major hep B host,” Wang added.

news Close to 40 million Chinese living with chronic hep C China - About 38 million Chinese are living with chronic hep C yet public understanding of the disease is low, said the China Foundation for Hepatitis Prevention and Control (CFHPC). The incidence of hep C has surged in the past few years, said a CFHPC report. The Ministry of Health added that hep C was one of China’s top five most concerning epidemics. But the public is not well informed about the disease, the CFHPC said, citing its latest survey that indicated only one percent of the respondents were aware of how hep C spreads and how to prevent it. Only five percent had been tested for hep C. No vaccine is available, yet 80 percent of those surveyed believed that they could be protected against hep C by a vaccine, the report said. Although the hep C virus can be eradicated through appropriate therapy, about 30 percent of those surveyed assumed there was no cure for the condition. Many people also confused hep C with hep B, the CFHPC report said. The CFHPC suggested that the government tighten controls on blood products and expand hep C testing. Hep C is spread when the blood of someone with hep C gets into the bloodstream of another person. • Abridged from http://news.xinhuanet.com via www.hcvadvocate.org

Hao stressed that discrimination against people with hep B in fields such as employment and education should be eradicated, and highlighted the need to halt compulsory hep B tests for job applicants. • Abridged from www.chinadaily.com.cn

The Hep C Review

Ed60

March 2008

news Last ride for Evel Knievel USA - Evel Knievel, the hard-living, death-defying adventurer who rode motorcycles in a series of spectacular airborne stunts in the 1960s and ‘70s, has died. He was 69. Knievel had been in failing health for years with hep C, diabetes, and an incurable lung condition. Knievel amazed and horrified onlookers in 1968 by vaulting his motorcycle 45 metres over the fountains of Caesar’s Palace in Las Vegas, only to land in a bone-breaking crash. He continued to win fame and fortune by getting huge audiences to watch him roar his motorcycle up a ramp, fly over 10, 15 or 20 cars parked side by side and come down on another ramp. Perhaps his most spectacular stunt, another disaster, was an attempt to jump an Idaho canyon on a rocket-powered motorcycle in 1974. Knievel’s showmanship and disdain for pain and death were so admired that he became a folk hero. Performing stunts hundreds of times, Knievel repeatedly shattered bones as well as his bikes. When he was forced to retire in 1980, he told reporters that he was “nothing but scar tissue and surgical steel”. He underwent as many as 15 major operations to relieve severe trauma and repair broken bones skull, pelvis, ribs, collarbone, shoulders and hips. “I created the character called Evel Knievel, and he sort of got away from me,” he said. His health was also compromised by years of heavy drinking; he said at one point he was consuming half a bottle of whiskey a day, washed down with beer chasers. In 1999 he underwent a liver transplant after nearly dying of hep C, which he believed he had contracted through a blood transfusion after one of many violent spills. • Abridged from www.theage.com.au

Injecting drug use infiltrates Africa Zimbabwe - Africa has long been considered largely free of injecting drug use (IDU), but this is changing at an alarming rate. It is reported that injecting drug use is increasing dramatically in coastal countries such as Egypt, Kenya, Mauritius, Nigeria, South Africa and Tanzania. Heroin is the most commonly injected drug but people are now also shooting up crystal methamphetamine, cocaine and even ecstasy. The sharing of injecting equipment can cause HIV and hep C to spread quickly among drug users. Given these alarming statistics, the silence surrounding harm reduction in most countries in sub-Saharan Africa is clearly a recipe for disaster. Little is being done to confront the problem in its early stages. Without access to appropriate and sensitive harm reduction services, people who inject drugs will continue to engage in high-risk behaviours that promote the spread of HIV and hep C. The cost of needle and syringe exchange programs has budgetary implications for most poor countries. Also, drug use is considered a prosecutable offence, forcing drug injectors to remain underground. Harm reduction programs are not considered a priority. Sub-Saharan countries could learn from countries with harm reduction programs, that these can be successful in protecting the population. Policies that promote harm reduction are urgently needed now, before injecting drug use becomes a widespread problem in the region. Harm reduction programs and policies in Asia and Europe can provide policy-makers in sub-Saharan Africa with the groundwork to deal with this hidden problem in their own contexts. Timely and effective harm reduction will not only save lives but will lessen the chance of drug injectors becoming a bridging population for the spread of HIV and hep C into the general population. • Abridged from http://mynews.in via www. dailydose.net

www.hepatitisc.org.au

Woman sues, blaming dental implants USA - A woman who underwent dental implant surgery at a Chicago dentistry office is suing the makers of products used in the surgery, after she learned the products had been recalled and she had contracted hep C. After undergoing a dental implant procedure, Donna Drew was told about the recall and was advised to undergo medical testing. After undergoing the testing, Drew was diagnosed with hep C. Drew accuses the medical companies that were involved in the making of the products, of inadequate design, manufacturing and testing of the product, which allowed for contamination. • Abridged from www.suntimes.com via www. hcvadvocate.org In Australia, dental implants are encased in a sealed bubble as a single, individual, sterile item. The sealed bubble containing the individual sterile implant is, itself, sealed in another (also sterile) wrapping. Dentists throughout Australia observe standard precautions of infection control for each and every patient and for each and every procedure. Therefore, I see no reason that any person in Australia should be particularly alarmed about dental implants placed in Australia. Dr S. Zahedi (dental advisor to the Hepatitis C Council of NSW).

news DIY piercing kits available over the counter and online Australia - Young teenagers are buying do-ityourself piercing kits over the counter in shops and through the online auction site, eBay. The Australian Medical Association has slammed the kits, saying those who use them risk contracting hepatitis. The warning comes as the Victorian Government proposes banning intimate piercings for under18s and requiring parental consent for piercings on under-16s. But the Sunday Herald Sun has found several Victorian shops selling “Dr Pierce” kits over the counter for $30 each. Victorian company, Rossan Distributors, is also selling bigger piercing guns online. Failed piercings can lead to infections, hepatitis and nerve and blood vessel damage. Operators who pierce the genitals or chest of a person under 18 could be fined $2,000 under the laws to be introduced this year. • Abridged from the Sunday Herald Sun, 13 Jan 2008. Also see article on DIY piercing, p38. ED

Scottish social workers to raise hep C awareness Scotland - The Scottish government is urging social workers to improve their knowledge of hep C as part of a community awareness campaign.

It is estimated that around 50,000 Scots carry the liver disease (which is commonly transmitted in Scotland through injecting drug use), but twothirds remain undiagnosed.

“Social work can play a key role in helping to tackle this issue. It is important to help identify those with hep C from an early stage and encourage individuals to seek treatment,” said Hazel Robertson, a member of the hepatitis C national action plan co-ordinating group. • Abridged from www.communitycare.co.uk via www.dailydose.net The Hep C Review

Ed60

March 2008

news Complementary health regulations adopted in NSW Australia - The New South Wales Government says a new code of conduct will help stamp out unethical behaviour in the complementary health industry. The draft code will cover all unregistered practitioners, including counsellors, massage therapists and naturopaths. Health Minister Reba Meagher says the code of conduct will bring a greater level of accountability to health practitioners. The draft code will be finalised in early 2008. • Abridged from www.abc.net.au

Tablets linked to liver deaths Australia - The Therapeutic Goods Administration (TGA) has issued a warning about serious adverse side effects reported with oral Lamisil, a pill formulation for ringworm and nail fungal problems. Three people have died and several others have suffered serious liver reactions after taking the popular tablet to treat fungal infections, the drug regulator says. The medication is commonly prescribed to people who do not respond to topical fungal creams, but the regulator’s Adverse Drug Reactions Advisory Committee (ADRAC) warns it can cause liver failure. A spokesman for the drug’s manufacturer, Novartis, said that serious and life-threatening liver reactions were rare and well documented side-effects of oral anti-fungal medications. The company said it agreed with the advice issued by ADRAC. • Abridged from an AAP news release.

www.hepatitisc.org.au

WizzWize goes live Australia - The Australian Injecting and Illicit Drug Users League (AIVL) Education Program recently launched their WizzWize website. WizzWize aims to raise awareness of hep C and other blood-borne viruses, such as HIV/AIDS and hep B among people who use amphetamines and other illicit drugs. “We value peer education - users educating users - as a means of getting this message across and to impact on the spread of hep C,” say AIVL in their website introduction. • Abridged from http://wizzwize.com.au

Staff changes at the Hep C Council NSW Australia - Kay Bazley has joined the Council staff team as Programs Director following the departure of Teresa Clonan. Kay brings a wealth of experience to the staff team and we look forward to her input into the Council’s continuing growth and expansion. We’d like to thank Teresa for her leadership over the last three years, guiding the Council’s service delivery, project work and internal development through a period of significant growth. We’d also like to thank ex-staff member, Peter Middleton, for the valuable work he carried out in his capacity as an Education and Development project worker over the last three years. • HCCNSW

feature

HEP573 - a complementary medicine trial

Seeking additional options for managing your hep C? Anne Jackson reports on the HEP573 trial.

t’s estimated that 210,000 people in Australia are living with hep C but only two percent have tried interferon treatment. The news of trials being conducted on complementary medicines is therefore always very welcome in the hep C community. The HEP573 trial is one such study. It was conducted in three NSW hospitals: the Royal Prince Alfred, Westmead and the John Hunter hospitals. The study aimed to discover: • whether the antioxidants chosen for the study were effective and safe in the treatment of chronic hep C • whether milk thistle is best used alone or in combination • whether hep C virus genotype had any effect on the efficiency of the antioxidants. There were three groups in the trial. One group of participants was given a placebo (a harmless substitute), another was given just Silymarin (the group of active ingredients in Milk Thistle), and the third group was given a combination of Silymarin, St John’s Wort, Siberian ginseng, Phyllanthus, other antioxidants and traditional Chinese medicines (TCM). The antioxidants included vitamin C, zinc, alpha lipoic acid, selenium, green tea, grape seed extract and turmeric. The TCM used were Andrographis paniculata herba (Chuan Xin Lian), Astragali radix (Huang Qi) and Curcumae rhizoma (Jiang Huang). No significant side effects were reported and trial preparations were tolerated by all participants. It took significantly longer than expected to recruit people for the study. There were a number of trial difficulties. A number of potential participants for the trial were found to be treated for depression and taking selective serotonin re-uptake inhibitor antidepressants (SSRIs). These people were excluded from the trial due to the known negative interaction between SSRIs and St John’s Wort, one of the trial ingredients. The necessity for a 12 week ‘washout’ period to clear any previously taken herbs and vitamins discouraged some people from participating and others who may have been interested in the trial were reluctant to take part in a trial with a placebo group.

Image via google.com

Eventually, 118 participants were successfully enrolled in the study. Ages varied from 22 to 75 years; participants had been affected by chronic hep C for between five and 40 years. All participants had abnormal ALTs (a liver function test enzyme) on three occasions in the previous six to 24 months. For each participant, the trial itself lasted six months with another six months of follow-up. At each person’s initial visit, viral load was measured and their genotype determined. Viral load was again measured, after six months on therapy, and once more as part of follow-up, six months after therapy concluded. Liver biopsies were not part of the trial. Some participants noticed their ALT readings were the best they had been for years, and although not all information from the trial has yet been collated, results to date are showing that some people have had a reduction in their viral load. There was a significant difference in ALT normalisation after six months on therapy in the Silymarin and antioxidant group (10/39) compared to the placebo (2/39) and the Silymarin group (1/40). With these positive findings, some people who went through the trial have sought access to the trial preparations so as to maintain their improved health. It is hoped that the preparations will become more widely available through the supplier Phytomedicine. The final results of the HEP573 trial are still being collated in March 2008. The more ways we can deal with the effects of hep C, the better for our whole community. • Anne Jackson writes for Hepatitis C Community News, Hepatitis C Council of South Australia. Abridged from Hepatitis C Community News, Number 38, Dec 2007 (updated by Ses Salmond). If anyone who participated in the HEP573 Study would like to know which treatment group they were in, please call Ses Salmond on 02 9211 4510 or 0414 453 243 and leave your contact details. Also see Hep C Review, ED45 p9, ED46 p24 and ED51 p30.

The Hep C Review

Ed60

March 2008

my story

From Africa to my hepatitis C journey

was born in Africa many years ago. My journey with hep C began in May 2007. I insisted on getting the hep C test after reading about how dirty hospital conditions in Africa can put people at risk. I was a weakling when I was growing up and the hospital was like my second home. I continued my hospital visits when I had my babies. Sharing of toothbrushes, razors and needles was the order of the day. Uncles, aunts, cousins will just forget their toothbrushes and grab anyone’s from the cupboard. A nurse would fill up one injection to share between two people. This was due to lack of equipment. This practice stopped in the early 90s when the HIV/AIDS epidemic started.

I remember the day I was diagnosed. I got the result. The nurse was very sorry to be delivering this message to me. I was not sorry to get that message from her. I understood from the beginning that there were two results out of every test. School exams involve a pass or a fail. Blood tests a negative or a positive. So here I am with my positive result, calm as ever, laughing off my fears, comforting the nurse instead of the nurse comforting me. Once the true meaning of my positive result hit home, I was running around like a headless chicken, confused and putting up appearances. On top of it all I was trying to get more information and getting more confused. Some more weeks after my diagnosis, the ‘why me?’ started. Reality had also sunk in. I knew it was not an easy thing to live with this virus. I was angry. Angry for not knowing how I caught the virus; angry for not knowing for how long I’d had it. I was angry for not knowing what condition my liver was in, and angry for not knowing and almost drinking myself to the grave. I was angry for fearing death (my own mortality) and wishing I had done this and that in life.

12 12

www.hepatitisc.org.au www.hepatitisc.org.au

my story

Soon after my acceptance stage, I found help through the internet. I ‘Googled’ and found the hepCaustralasia forum. This put me in contact with a lot of good people. I want to say thank you to all those who helped me. I feel like I am now thriving and now months later, I’m still getting a lot of help. There is no weaning at this site and I will be drinking from the breasts of your knowledge. I’m happy about that and I thank everyone from this supportive family. It was in July 2007 that I found this forum. I started to read a lot from the site. Because I was armed with this new knowledge, I started asking questions and expecting answers from my doctors. I insisted that I see a specialist. I persevered in everything I was doing. I demanded treatment. More blood tests followed. (More tests results were followed by more confusion on my part because I often did not understand some of the results.)

When I don’t understand anything to do with me, I get really angry and sometimes feel everything is hopeless. I found out I had geno 1b which was another blow to me. I realised I was in the hard to treat group but I insisted on treatment. My treatment started at the end of January. I have been doing lots of reading about side effects because I’m going to persevere and get rid of this monster. Hep C affects people anywhere in the world. Here I am, a hep C positive woman from Africa, living in New Zealand. I’m a fighter and my hep C should brace itself as I won’t go down easily. I will go down fighting. I have fought and won many personal battles in Africa. I have fought and won personal poverty wars, hunger wars, discrimination wars, gender wars, illiteracy wars and more recently financial wars from my home country Zimbabwe (which has the highest inflation rate in the world: 1000 percent). I started to tackle my hep C at the end of January 2008 and my journey continues. Via www.hepCaustralasia.org

Image via google.com

But after a while, it was a case of back to reality. Yes I had it and ‘so what?’ I began to accept that the disease affects human beings and I was a human being who happened to be infected by that virus. After accepting my hep C, I started to look for something to do about it. Within that month of my diagnosis, my journey took a different turn.

Image via google.com

Aotearoa

The Hep Hep C C Review Review The

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Roadside dentists pose blood-borne This article from the United Nations takes a look at transmission routes that are unheard of here in Australia and highlights the difficulties in arresting viral epidemics in developing parts of the world.

olding a chunk of ice wrapped in a handkerchief firmly to his right cheek, Saleem Jawad, 34, looks rather pleased with himself. From time to time he turns away to spit out a stream of red blood, before sipping from a glass of cold water beside him. Saleem, a car mechanic, has just had a molar removed in Lahore, capital of Pakistan’s eastern Punjab Province. The roadside dentist, Siraj Saeed, who performed the task, has the extracted tooth in a steel bowl next to an array of instruments spread out on a small, stained mat where he receives and treats his patients. “The problem has gone now. I will be able to sleep properly and eat again in a few hours,” Jawad said. But while the roadside tooth removal - performed without anaesthetic and with only the most primitive, unsterilised tools - was obviously painful, there could be dire consequences for those who use the services of roadside dentists. Recent studies in Pakistan have shown that roadside barbers, dentists and doctors are responsible for the rapid spread of diseases such as hepatitis and HIV/AIDS. “When the same instruments are used on one patient after another, and only dipped in a pail of water to clean them, there is an immense danger of passing on all kinds of diseases,” said Fahd Anwar, a Pakistani dentist based in the USA. Dr Anwar, who is considering moving back to Pakistan, cited an acute shortage of qualified practitioners - effectively encouraging roadside dentistry to thrive. According to the Pakistan government, there are 6,761 dentists in the country for a population of at least 155 million - roughly one dentist for every 23,000 patients. This means fees charged by trained dentists at private clinics tend to be high, while government medical facilities are often poor and involve long waiting periods.

www.hepatitisc.org.au

“I know people say one can get sick by visiting roadside dentists. I have seen a program on TV about this, and something about boiling instruments,” said Jawad. But he, and Siraj Saeed’s next patient, Umar Gul, from Pakistan’s North West Frontier Province, both agree: “People like us cannot afford to go to the fancy clinics where qualified doctors work”. Roadside dentists charge between eight US cents and $3 for their services, while a visit to a private dentist will cost more than $8. Even treatment at public sector facilities often incurs larger costs. Such costs are beyond the means of many people in Pakistan who earn less than $100 a month. As a result, thousands of people each year visit roadside practitioners, who usually depend on lessons passed on from elders or simply first-hand experience, for their expertise. Moreover, most have little or no awareness about the need for hygiene, let alone sterilisation and the dangers of blood-borne viruses. “These things are in Allah’s hands and we do what we can,” says Saeed. “I wash my tools with soap each evening.” But with the prevalence rates for hepatitis C to be around five percent and rising, such practices inevitably play a role in the spread of the disease, say specialists. Pakistan is also now ranked in the “concentrated epidemic” stage of HIV/AIDS, according to the World Health Organisation.

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e virus threat Pakistan’s National AIDS Control Program (NACP) officially confirms only 3,198 HIV/AIDS cases across the country, but NACP experts concede the “number of people with HIV/AIDS could be higher”. Following a month-long anti-AIDS campaign, the NACP country director, Asma Bokhari, said that in several Punjab districts, the re-use of syringes was found to be a major cause of the spread of AIDS, and that “unsafe medical practices” posed a grave risk. Yet despite this, across Lahore and other major cities in Pakistan, there are many dentists, barbers ear doctors and others, who continue to carry on their unsafe practices. Their numbers are unknown but it is estimated to be in the tens of thousands. To date, campaigns to tackle such unsafe practices have failed to achieve any results, despite the obvious risks. • Abridged from www.irinnews.org/ IRIN (Integrated Regional Information Networks) is part of the UN Office for the Coordination of Humanitarian Affairs.

Good signs for US harm reduction policy Bill Bowtell reports on recent US developments that will impact on harm reduction initiatives across the globe.

nderneath the hullabaloo of the American presidential election, there are encouraging signs that a more pragmatic approach is emerging on the always vexed issue of America’s international and domestic HIV/AIDS policies. The two principal contenders for the Democratic presidential nomination, Senator Clinton and Senator Obama, have both publicly pledged their support for greatly expanded needle and syringe exchange programs in the US, an essential component of successful HIV and hep C prevention. Both Clinton and Obama have generally supported a greater emphasis on practical prevention programs with less emphasis on such things as abstinence promotion. In another welcomed move, President Bush recently confirmed that he would seek US$30 billion from Congress to double the President’s Emergency Fund for AIDS Relief (PEPFAR). This move seems likely to be supported by both Republicans and Democrats in Congress. This will make a significant and welcome contribution to the global fight against HIV and other bloodborne viruses like hep C. Taken together, these developments shift American policies towards far more realistic HIV/AIDS policies, and away from the highly-politicised and ineffectual policy settings of the last two decades.

Image by Steve Evans via www.flickr.com

Many members of the recent US House of Representatives delegation that visited Australia were eager to discuss HIV/AIDS policies and programs, and to learn from Australia’s record of successfully containing AIDS. • Bill Bowtell is Director of the HIV/AIDS project, The Lowy Institute for International Policy. Abridged from www.lowyinterpreter.org

The Hep C Review

Ed60

March 2008

my story

My internet journey tow I

n 2006, I joined the hepCaustralasia forum and my experience of living with hep C was transformed. HepCaustralasia is primarily an internet support group. However, I soon realised how this group of people became so important for me. This is my story about joining a supportive internet community which ultimately helped me to understand about living with hep C. I first became aware of my hep C status in 2002. My doctor told me I had hep C, gave me some pamphlets and sent me on my way. I was angry and confused about the diagnosis because a previous blood test in 1997 showed a negative result (clear of hep C).

In the days after my diagnosis there were just three people in my life with whom I could discuss my hep C: my girlfriend, my therapist, and one close mate. It wasn’t long before I turned to the internet and scoured the web for relevant information and resources. It felt safe accessing information in private but at times it became overwhelming. I was alone, in front of my computer and surrounded by silence. The internet was self-helpful although it was such a secretive and isolating experience. Over the next couple of years I changed my approach to diet and beer drinking, and convinced myself that through Googling “HCV” on a regular basis I’d come to terms with hep C related denial. One night in 2005 I stumbled onto a site called Hep C NSW. I was amazed and repulsed at what I found on the site. People were being very open about their symptoms and treatment problems. I remember the horror of seeing the Tx word and hearing about the severe side effects that people were experiencing. Treatment! Even though I was experienced with posting on internet email lists, I remained a lurker on this new forum. I remember thinking, “I’m not ready for all this.” Stepping back into my own secret world seemed much safer. I liked to approach things in my own way and decided to pull back from the forum.

www.hepatitisc.org.au

I came back to the forum in October 2006 but by now it had expanded and become hepCaustralasia. I continued my fact finding mission but my research in the forum seemed to take a more personalised direction. Instead of scientific and medical sites with pages of facts, the forum offered me personal accounts of living with hep C. I began to familiarise myself with the different members on the forum, their individual plights and their vast experiences of living with hep C. I built real relationships and became a member of an internet support group which I could access any time I wanted.

Reading the discussion posts, blogs and personal messages on hepCaustralasia opened up a very humanly-social way for my continuing acceptance of living with hep C. Even though my stomach churned with tension when reading some of the stories, I felt compelled to log onto the site as much as possible. I remember being invited to the forum by Colx via the personal message function. I was welcomed by many intelligent and understanding people. Inspiration came from Nonna, Mac, Julia, Murph, Juzz, Panos, Tanya, DaveG, Kunzite, Magda, Zeph, Cooper, Brett, Linda, Lou, Ness, Colx, of course, and others. I began to express myself by creating a new discussion thread which to my delight attracted a great deal of attention and fun. I had “arrived” in a warm and welcoming group of people who became my hepper friends. Each member of the forum had their own life story and seemed to deal with their virus differently. Instead of being home alone with hep C, I found myself involved with a family of wonderful people all dealing with aspects of living with it. Many of the conversations were about treatment, which was understandable, however discussions about disclosure, transmission, dealing with doctors, trial protocols, disability pensions, research projects, psychological issues and liver transplants built on and helped crystallise my previous fact finding missions.

my story

wards hep C acceptance On the forum I felt accepted - virus and all. This was something I hadnâ&#x20AC;&#x2122;t found possible in other social or work environments. Earlier this year, I travelled interstate to Sydney and met many of the people listed above. A wonderful man, Panos, invited all of us to his home for a gala celebration of the forum. It was such a thrill to meet so many people from all around Australia and feel quite special about our common connection. In 2007 I became a moderator on the forum and continue to enjoy posting, blogging, messaging and chatting. It seems that I have come a long way in accepting and understanding the nature of my hep C. I am now a member and volunteer at the Hepatitis Council of Western Australia and look forward to continuing my supportive work within the hep C community. Many thanks to the people who in the early days set up hepCaustralasia, and to the many members and contributors of the forum for their commitment to a very good internet support group and forum. Ken, WA

The Hep C Review

Ed60

March 2008

Image by Julian- via www.flickr.com

NB: Kenâ&#x20AC;&#x2122;s story originally appeared in the Spring 2007 edition of Cfiles, the Hepatitis Council of Western Australiaâ&#x20AC;&#x2122;s quarterly magazine.

feature Hep C treatment for people moving in and out of custody Jenny Douglas reports on the treatment transition - heading in and out of jail

ncreased awareness of hep C treatment and removal of liver biopsy as a criteria for treatment has led to increased numbers of people commencing treatment while they are in custody. Increasing numbers of people are also entering into custody while already on treatment. It is well known that good adherence to treatment has a significant impact on treatment outcomes. For this reason, a system has been put in place to ensure that when patients are released back into the community, or enter into custody, all the necessary information is available to enable treatment to continue. If you think you maybe entering into prison, tell your hepatitis clinic nurse or doctor. The nurse or doctor can then provide your details to the Justice Health nurses. Take all your medication with you so you can continue with the treatment without any breaks. If you cannot take your medication with you, get a family member to bring it to you as soon as possible. If you are in prison and about to be released, it is important that you tell the nurses in the clinic so they can organise ongoing care for you when you return back into the community. It is also important that when you do leave prison you make sure you take your medication with you. You will be provided with enough medication to last until your appointment with your doctor. You will also be provided with copies of your test results and any other relevant information to take with you to the doctor. • Jenny Douglas, CNC Hepatitis C, Justice Health

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www.hepatitisc.org.au www.hepatitisc.org.au

Hepatitis B -

With one in four people with long standing hep B developi so that we can treat early and prevent the development of

he typical person in South West Sydney who is diagnosed with hep B is a woman who is aged in her mid-20s, who emigrated from South East Asia (most likely from Vietnam or Cambodia), who is pregnant and who has no idea that she has hep B. The hep B virus attacks the liver. It is a blood-borne and sexually transmitted virus. This means it can be transmitted through any activity where one person’s blood gets into another person’s bloodstream, or when a sexual body fluid enters another person’s bloodstream (e.g. via a break in the genital lining). Hep B is a more resilient virus than HIV, and is much easier to catch. Over the last six months I have been part of a team researching hep B in South West Sydney. This area is an epicentre for the disease in Australia, with one of the biggest hepatitis clinics in the country. But why is the typical patient who is diagnosed with the disease a pregnant woman? Because the screening for hep B is a mandatory part of antenatal care and screening is not routinely offered in other hospital or health care circumstances. Pregnant women are screened to determine if they are carrying diseases such as HIV, hep B and syphilis. Hep B tests are offered as there is a high risk of transmission from mother to child at birth. If infection is identified in the mother, extra and earlier vaccination is given to protect the baby. If a baby contracts hep B at birth it has a much higher chance of developing a long standing and damaging infection than an adult contracting the virus. This is because the defences of the child are too weak to recognise the infection. The liver is made up of many tiny cells called hepatocytes where the hep B virus hides. The virus can exist in the baby’s liver for many years without causing any damage before the immune system finds it. The white blood cells which make up our immune system eventually fight the virus, and in doing so, damage our liver cells. This will cause injury to the liver and may result in scarring. If this scarring is severe it is called cirrhosis and can cause many clinical problems. These include liver failure or the development of liver cancer.

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a call for wider action

ing liver cancer or liver failure, Australia needs a screening program life threatening complications, writes Sally Holden. Without treatment, around one in four people with a long standing hep B infection will develop liver cancer or liver failure. This paints a serious picture for babies who contract the disease. The aim of the hep B antenatal clinic at Liverpool Hospital in Sydney is to educate women about this disease and to take steps to prevent transmission to their unborn child. One component of our research was to determine how many women were first diagnosed with hep B during their normal pregnancy screening. Figures from three hospital antenatal clinics show that an astounding 32 percent of women were diagnosed through screening. This means that they would not know they had the disease if they had not become pregnant. Just over half of the women in our study were diagnosed by their GP but we found over a quarter were diagnosed by the GP during their current pregnancy. This makes us wonder how many of these women who were diagnosed by their GP and were only tested because they were pregnant. Though our figures can only confirm that just under half of the women were diagnosed during pregnancy, the actual numbers are probably much higher. Now translate these figures to men. Men don’t get pregnant and, therefore, don’t have antenatal screens. This means many men will realise they have this potentially life threatening disease only after they have developed serious liver damage, by which time it may be too late for treatment. Another component of our work was to explore which sections of the community were using the hepatitis clinic. Almost all of the patients were born outside Australia, mostly in South East Asia. Vietnam and Cambodia were two of the most common countries of birth, which reflects not only the high level of infection in both countries, but the large Vietnamese and Cambodian communities in Sydney’s South West. When you have a high proportion of non-English speaking people, there will be high demands on interpreter services. Nursing staff at Liverpool Hospital have reported that consultations which

Image by Paul Goyette via www.flickr.com

require an interpreter take longer and place strain on patient relationships. Effective communication over the phone with patients who require an interpreter is further complicated by the difficulty phone interpreters may have in understanding the complexities of the disease. Australia has a hep B prevention program, providing mass vaccinations for school children and babies. What we need is a screening program for high risk groups so that we can both treat early and prevent the development of life threatening complications. This program is not just about South West Sydney, it concerns all areas of Australia. • Sally Holden is a medical student at the University of NSW Abridged from www.abc.net.au/rn/scienceshow/ stories/2007/2086864.htm National testing guidelines state that, among pregnant women, hep C screening tests should only carried out in those individual cases where a woman has transmission risk factors. Pre- and post-test discussion should take place in all cases of screening. Also see following page. ED The Hep C Review

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March 2008

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Identifying the needs of people Jack Wallace reports on a needs assessment that captures the views of health professionals and their perspectives on how the Australian health care system can best meet the needs of people with hep B.

he National Hep B Needs Assessment, carried out by researchers at the Australian Research Centre in Sex, Health and Society, is a world first in identifying the needs of people who are chronically infected with the virus. The assessment is unique in that it captures the views of health professionals as well as their perspectives on how the Australian health care system can best meet the needs of people with hep B. The hep B virus was identified 40 years ago, and its impact remains a major, global, public health challenge. Worldwide, about 400 million people have clinical signs of hep B infection, the majority of whom live in the Asia-Pacific region. Up to 160,000 people in Australia are chronically infected with hep B and rates of hep B-related liver cancer in Australia are increasing despite improvements in antiviral therapy. The hep B virus is difficult to eradicate and only a small proportion of people with chronic hep B receive treatment. During the research, people with hep B reported their diagnosis as shocking, and few received any pre- or post-test discussion or information at the point of diagnosis. One person explained: “When I went to see the family doctor and she told me that I got it, it was shocking, because I don’t really fully understand what hep B is but I know that sometimes it can lead to serious problems.” There were indications that people with hep B were ill-informed about their infection and that decisions made about health were based on incorrect information. “I heard about people killed by hep B and C but I’m just like at the beginning and [I’ve got it].” “Now that I know it damaged my liver yeah, I would have been a bit better off if I knew more … if they told me a few years ago that I wasn’t really meant to drink alcohol … I would have cut down on it.”

www.hepatitisc.org.au

Cultural understandings about hep B inform how people interpret infection, and communities play an important role in providing information about hep B. “When they say hepatitis, because I wasn’t sure what does it mean hep B … I asked some other people and then they say this means this kind of thing in our language we say … it means that this skin is yellow.” In Australia, the communities most affected by chronic hep B often experience it in a context of highly disrupted lives. They may come from places where access to health care services is non-existent; where understandings of the body and viruses differ from the western medical model; and where hep B is not a priority. Indigenous Australians make up an estimated 16 percent of people in Australia who live with chronic hep B; in spite of these communities representing two percent of the Australian population. Few of the liver specialists interviewed for the assessment reported treating Indigenous people. There has been little attention by government or the pharmaceutical industry on helping medical and public health professions adapt to the changing hep B environment. All of the professional sectors interviewed as part of this assessment (clinicians including GPs, and nongovernment and welfare workers) identified workforce development as essential. Unlike the Australian national public health response to reducing the impact of other bloodborne viruses upon the community, no nationally coordinated public health response to chronic hep B exists. The needs assessment identified a series of priorities for a nationally coordinated response to hep B, including:

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e in Australia living with hep B • Developing consistent coordinated responses at national and state/territory levels of government • Improving the evidence base that informs successful policy and program outcomes • Improving the hep B vaccination program to ensure that communities at greater risk of infection have ready access to the program • Reducing the barriers to hep B clinical treatment and management • Ensuring that a skilled workforce can effectively respond to the diverse needs of people with hep B • Developing information resources for people with hep B and delivering these resources appropriately • Ensuring that people receive pre and post test discussion (information and education) when they are diagnosed with hep B

Image by C.K. Koay via www.flickr.com

• Developing the capacity of communities most at risk of infection to effectively respond to the issues raised by hep B. One person interviewed for the assessment noted: “We have a chance to get it right with hep B; we got it wrong with HIV, in overdrive; we got it wrong with hepatitis C, in under-drive, and there’s a prospect of getting right with hep B.” • Jack Wallace is a researcher at the Australian Research Centre in Sex, Health and Society. The report is downloadable from www.hepatitisc.org. au/edu/hcvresearch.html The Hep C Review

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March 2008

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Federal Labor talks hep C Labor’s Nicola Roxon talked hep C with Hepatitis Australia prior to last year’s federal election.

n November, 2007, Hepatitis Australia put several questions to the main political parties standing for federal election. Nicola Roxon, (then) Shadow Minister for Health provided the following responses. Does Labor support a sensitive mass media campaign to educate the broader community about hep C? Federal Labor recognises the need to promote awareness of hep C. We are committed to working with stakeholders to identify the most effective and appropriate approach for achieving this objective. Will Labor commit to advocating within the new Parliament for adequate resourcing of a hep C mass media campaign? Federal Labor would seek to ensure that any efforts to promote greater community awareness of hep C were appropriately resourced. Does Labor support the expansion of hep C treatment access points to improve treatment uptake? Frontline treatment of conditions such as hep C is primarily the responsibility of state and territory health departments. Nevertheless, in principle, Federal Labor has no objection to the expansion of hep C treatment access points to non-hospital settings. Federal Labor believes in expanding the role of non-hospital health care services (e.g. primary health care) to enable people to seek treatment where possible in local communities and to relieve the pressure on hospitals. Will Labor commit to funding of clinical trials of different modes of treatment for hep C? Federal Labor acknowledges that clinical trials of different modes of treatment for hep C could potentially play an important role in helping to improve treatment uptake.

www.hepatitisc.org.au

Does Labor support the expansion of harm reduction programs to custodial settings? As far as we are aware, a range of programs currently exist in custodial settings in Australia’s states and territories (e.g. methadone treatment programs). These are matters for State and Territory Governments. Will Labor commit to advocating within parliament for increased funds specifically targeting hep C and hep B research across all streams (basic science, clinical, social, viral and epidemiology)? Federal Labor recognises the importance of specific research into hepatitis B and C across all research streams. In Government, we would seek to ensure that this research is appropriately funded. Will Labor commit to on-going support to hepatitis community organisations for their work in partnership with Aboriginal and Torres Strait Islander communities? Federal Labor understands that there is a particular problem with viral hepatitis in Indigenous communities. In Government, we would seek to work in partnership with hepatitis community organisations and Indigenous communities to address this problem. Will Labor commit to specific funding for raising awareness of heps B and C within Australia in association with World Hepatitis Day? If World Hepatitis Day was endorsed by the World Health Organisation, a Rudd Labor Government would consider providing appropriate funding for awareness raising activities conducted in conjunction with this day. • Nicola Roxon, (then) Shadow Minister for Health, Dec 2007. Abridged from www.hepatitisaustralia.com

opinion feature What does a Rudd Review of hep C government mean care and treatment services in NSW for drug policy? Drug policy was not an issue in the recent defeat of the Howard Government. But Alex Wodak asks, will the election of a Rudd government affect current policy?

ustralia adopted harm minimisation as its official national drug policy in 1985 enabling the adoption of a flexible, swift and effective response to the threat of HIV spread among injecting drug users.

In 2006, NSW Health undertook a major review of services used by people seeking care, treatment and support in relation to hep C.

hroughout 2007, lead consultants Jill Hardwick and Jacq Hackett interviewed a wide range of stakeholders, held focus groups of people with hep C, made site visits and received submissions from individuals and agencies.

John Howard’s government adopted a “Tough on Drugs” approach in 1997 after stopping the proposed rigorous scientific trial of prescription heroin.

The final draft report was discussed by the NSW Ministerial Advisory Committee on Hepatitis on 18 February prior to its sign-off and approval by NSW Health, expected in March 2008.

Despite this, Howard’s government was the first to provide federal funding to the states to enhance needle syringe programs. Australia continued to be a very strong supporter of harm reduction at the UN and other international forums. Australia also generously funded harm reduction in the Asian region to reduce the spread of HIV among injecting drug users. The Howard government also provided substantial funding to divert convicted drug users from the criminal justice system to the drug treatment system.

The report makes some hard-hitting but not unexpected observations. It notes that treatment services are operating at absolute capacity. While it welcomes new initiatives currently underway in expanding hep C models of care into primary health care and alcohol and other drug areas, it notes that within current funding arrangements there is no room for growth in the public hospital-based hep treatment clinics.

It seems unlikely at this stage that Rudd’s drug policy will differ markedly from Howard’s although the rhetoric is likely to be less strident and more compassionate. However, the election of Dr Brendan Nelson as leader of the Opposition may see a return to a more bipartisan and even an evidence-based approach to drug policy. Like other doctors, Nelson will find it hard to ignore clear rigorous evidence in favour of electoral fluff. Nelson has disclosed that he has lost a close family member to AIDS and has been deeply affected by that. As a doctor, Nelson would realise that HIV is not the epidemic that Australia has to have. • Dr Alex Wodak, President of the Australian Drug Law Reform Foundation. Abridged from www.crikey.com

Of 11 recommendations, the first proposes a doubling of the number of people accessing hep C treatment in NSW. Others recommend an overhaul of hep C planning and funding arrangements. It focuses on the need for equitable access by priority population groups for treatment services and makes clear recommendations for raising awareness about hep C in area health services, for implementing more effective workforce development strategies and for improving data collection. The Council, together with other stakeholders, will be using the forthcoming final report to advocate for vastly improved funding, planning and service delivery arrangements so that the personal and community impact of ongoing liver disease progression can be reduced. Visit our website, www.hepatitisc.org.au in the near future to read this landmark report. • HCCNSW

The Hep C Review

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March 2008

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Device keeps organs a

A new procedure has allowed researchers to keep livers viable outside the body for more than 72 hours This has great potential to boost the number of livers available for transplant, reports the UK Sunday Te

pioneering device that keeps organs “alive” outside the body could dramatically improve the success of transplants and provide new ways of treating tumours and liver disease.

“We think it will not only improve the results of a transplant, but it will also go some considerable way towards making more organs available, as we can start to use organs that are currently declined as they are not suitable.”

For the first time, scientists at the University of Oxford have managed to disconnect an organ from the body’s blood supply and keep it functioning on an artificial blood circuit.

He added: “In the longer term, we also envisage carrying out therapeutic approaches such as chemotherapy by isolating the organ from the rest of the body, treating it with the drug and reconnecting it without having to remove it.”

The procedure has allowed them to keep livers viable outside the body for more than 72 hours - four times the current time limit. It is hoped that the technique will make it possible to transplant organs that would previously have been unusable - alleviating the problems caused by a shortage of donors. Organs are capable of regenerating high levels of damaged tissue when isolated from the rest of the body, the scientists found. A version of the technique could also be used to treat organs with high doses of chemotherapy to combat cancers without harmful side-effects on the body. Such treatments might also be developed to fight liver disease caused by alcohol and hepatitis. Scientists are now planning the first clinical trials in patients and hope to use the technique on other organs including the lungs, kidneys and pancreas. They hope the procedure will be widely used within five years. “There are a lot of things you can do therapeutically to an organ if you can isolate it from the rest of the body,” said Peter Friend, a transplantation professor at the university. “We have good evidence that we can take an organ that has been really quite badly damaged before it is removed and recover it so that it works.

www.hepatitisc.org.au

Trial surgery has involved removing a liver from the body’s blood supply and linking it to a pump and artificial blood vessels. Fresh blood, enriched with oxygen and nutrients needed to keep the liver alive, is then pumped through the liver at normal body temperature. It is thought the organ is able to repair itself because it is freed from its normal function within the body. Currently, surgeons rely on donors who have been declared clinically dead but whose hearts are still beating. Lack of oxygen and the need to store organs on ice during transport can cause severe damage. The new method will allow the transplant of organs from patients whose hearts have stopped for up to an hour and the use of damaged organs. If possible, the technology will be fitted to ambulances enabling safer and more effective transport of potential transplant organs.

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alive outside the body

s - four times the current time limit. elegraph. Constantin Coussios, a biomedical engineering lecturer who is developing the new device with Professor Friend, added: “The organ never knows it has left the body as we provide it with oxygen, maintain the temperature and feed it with nutrition so it can survive. We have yet to find the maximum length of time we can keep an organ alive outside the body.” Researchers hope the new method will increase the number of organs viable for transplantation by more than 50 percent.

Image by Jason V via www.flickr.com

More than 7,200 patients in Britain are currently waiting for organ transplants, but only 3,000 such operations were carried out last year. A spokesman for the NHS organisation UK Transplant said: “There is a desperate shortage of donated organs in the UK, so anything that can improve the success of a transplant and increase the number of organs available is to be welcomed.” • Original story in Sunday Telegraph 22 April 2007. Abridged from www.telegraph.co.uk via ABC Healthupdate.

The Hep C Review

Ed60

March 2008

my story

A shock but no s T

he diagnosis came as a shock but no surprise. For the last few years beforehand I’d been feeling pretty crap and putting it down to other things. Mainly hereditary factors and the beginning of menopause (I’m 52 now and was diagnosed at 49 with hep C).

been drug-free for years so this was not an issue either. I started taking a liver herbal supplement, vitamin C and other anti-oxidants as well as other medication for my thyroid. I tried and tried to keep my weight down with varying levels of success, which means without success.

My mother previously had a hypothyroid condition, so it wasn’t that fanciful to think that was why I had one too. I’d always carried a bit of weight around my tummy, so likewise it was easy to explain away borderline insulin resistance and tell myself that once I started feeling better I’d start to exercise more and lose the weight.

The AST and ALT levels kept creeping up despite all of this. I had a feeling that if I could take time out and rest more then maybe they’d stabilise and maybe even go down, but with a full time job and a family, how can you manage that? I kept telling myself just a few years and the kids will be out of school and I won’t have to do so much.

Any time I ever had a blood test, the AST and ALT levels would be elevated but I always assumed that this was a consequence of having had hepatitis B in the 70s (a few lost years filled with continual attempts at self-obliteration) and never investigated it further. I’d had some big issues to deal with – my Mum’s death and my husband’s massive heart attack from which he fully recovered, thanks to whatever it is we worship – so it was only normal to be exhausted after dealing with that stuff, surely.

I like to be up-front with people, and I don’t like hiding my condition, but I really don’t want to be a victim of ignorance and prejudice, so I only disclose when I think it’s appropriate.

Does all this sound like a familiar pattern? I tried to ignore the occasional itchy skin and stopped noticing my yellow eyes. I’d been doing yoga for several years and had noticed that over a few months my muscle tone decreased, which was odd. I put this down to the start of menopause. I had a bunch of tests to find out what was wrong with me, but eventually a clued-up GP had me tested for hep C, and there was the explanation of all these symptoms. Crystal clear. The pity party for one lasted a few months, and then I started doing some research online. I found out a few things. Firstly, that there is an awful lot of information on the internet but how difficult it is to know what is reliable? Secondly, my symptoms were very mild compared to quite a lot of people. For example I had no scarring or cirrhosis on my liver. I was fully functional – married with two kids, held down a full time professional job. From then on my focus was learning how to minimise any liver damage and live as healthily as I possibly could. I’ve never been a big drinker so that was easy. I had 26

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Sometimes you just get lucky. A chance conversation with a yoga buddy led me to the acupuncture trial being run at the University of Technology, Sydney. The trial involved 24 acupuncture treatments and the measuring of ALT and viral load levels. My viral load level has dropped from 2,880,000 IU/mL to 1,860,000, and my ALT level gone from 126 to around 70! I definitely have heaps more energy and my mind feels much sharper. I feel like I am getting ‘me’ back. And yes, I will be continuing with the acupuncture treatment Before going on the trial, I wouldn’t have even thought of going to the gym, but thanks to another chance conversation this is exactly what I have done. I have fallen into a weekly routine of three 30-minute sessions of hard cardio training, three yoga sessions (more if I can manage it), a one-hour run and a weights training session. I’ve had varying medical advice on this and have decided that the best gauge is how I’m feeling (plus monitoring my LFTs), and this training makes me feel great. I’m now at the lower end of the normal weight range for my height and insulin resistance is no longer an issue. Neither is muscle tone. I guess I’ll never know if the thyroid problem is due to hereditary factors or hep C, but it really doesn’t matter.

I live close to the beach, and it has always been an important part of my life. A couple of months ago I joined the surf bronze training squad at my local beach and completed the training around a month ago, which is a great thing for any 52 year old, let alone someone who has hep C. I now do voluntary surf lifesaving patrols and am looking forward to getting trained as an inflatable rescue boat crew member. The acupuncture trial and the fitness work I’ve been doing have contributed hugely to my journey back to health, but I must say that what has kept me going has been my yoga practice. Although there is no evidence of this, I am convinced that without the yoga I wouldn’t have been able to deal with the disease - mentally, physically or spiritually. The more yoga I do,

the more I find that the asana and pranayama ‘arms’ of yoga give you energy in a way that no other systems can. Yoga has been an absolute cornerstone and foundation of my life and I feel blessed to have stumbled upon it. People say you make your own luck, but I feel extremely blessed and lucky for the coincidences that have enabled me to turn my health around. Yes, that evil virus is still playing Pac-Man all through my body, but now my immune system is much better able to cope with it. My quality of life is so much improved and I feel like I am living my life the way I want to. I’d still like to be able to get more sleep - maybe when the kids leave school! Jan, NSW

The Hep C Review

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March 2008

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surprise

my story

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The Hep C Review readership survey Many of the questions need just a This readership survey gives you the chance to tell us what you think circle around one of the answers about the Hep C Review magazine. (e.g. 1. What is your age).

Some questions ask how much you agree or disagree with a statement. Just put a cross on the line.

Other questions allow multiple It only takes a few minutes to fill answers (e.g. 8. Please describe out and is anonymous - we do not ask for your name or contact details yourself). on the actual form.

Other questions seek a written answer. If this is difficult, just write down the first few things that come to mind.

Prize draw We really value your feedback and as a thank you, we have organised a prize draw. This gives the first 200 people to respond the chance to win: • one of two JB Hi-fi $100 online gift vouchers, or • one of two annual subscription packs, each containing Healthy Heartwise, Wellbeing and Men’s Health magazines. To enter our prize draw, write your first name and a telephone contact number on the bottom of the survey’s third page. Cut this out and place it inside the form when you send it back to us. To ensure confidentiality, prize draw slips are separated out when survey forms are received and opened. The draw will take place on 10th April, and the four winners will be contacted by phone.

1. What is your age? (Please circle one) under 20

20-29

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2. What is your gender? male

female

transgender

3. What is your postcode? ...................................................................................................... 4. In what country were you born? ...................................................................................................... 5. Are languages other than English spoken at home? If so, which? ...................................................................................................... ...................................................................................................... 6. What level of education have you reached? ...................................................................................................... 7. What is your usual type of occupation or work? ...................................................................................................... ...................................................................................................... 8. Please describe yourself (Please circle one or more) a. Person with hep C b. Partner, family or friend of someone with hep C c. Health care worker d. Health administrator / manager

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March 2008

e. Other (please describe)

15. Do the following features interest you or not? (Please put a

....................................................................... ....................................................................... 9. If you have hep C, have you ever had interferon-based treatment? yes

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articles about the Hep C Council of NSW (e.g. ‘Council keyhole’)

very interesting 1

letters

news items

articles about hep C

articles about harm reduction

articles about general good health

articles about hepatitis B

people’s personal stories

research update articles

‘hello Hep C Helpline’ page

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....................................................................... ....................................................................... ....................................................................... ....................................................................... ....................................................................... 11. Are you a member of the Hepatitis C Council of NSW?

yes

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18. Did you know that the magazine seeks letters, stories and articles from readers?

strongly agree 1

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19. Are there any parts of the magazine that you always read?

14. How many other people read the copy that you read?

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20. Are there any parts of the magazine that you donâ&#x20AC;&#x2122;t usually read? very uninteresting

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22. Have you ever searched for more information about something after having read an article in the magazine? If so, please tell us

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briefly about it.

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strongly disagree 3

if you need.

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Prize draw entry: Just write your first name and a phone contact number, then cut off this slip and put it inside your survey form before folding and posting.

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To send: • Gently pull this centre spread survey form out from the magazine • With the form folded so all you can see is this back page, fold the bottom part of the form backwards • Then fold the top part backwards • Secure the edges with sticky tape • Post the form in your nearest mailbox Thanks again for your help

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The Hep C Review

Ed60

March 2008

my story

My hep C treatment A

s some regular readers of The Hep C Review might (or might not) have noticed, I have been writing a series of pieces that track my personal experience of PegInterferon Combo treatment for hep C.

So how do I feel about going through a very bad year of treatment, having to do without much of an income, being a drain on my wife, family and friends, and thinking that a big day was being able to both have a shower AND walk the dog?

Originally I thought the story of my 48 week treatment for geno1 hep C would be in four parts: deciding whether or not to do treatment, starting treatment, and continuing it through to the final result.

Well at first it felt pretty lousy I can tell you. I had no job, I still felt very sick and some of the weirder side effects only made themselves known after I’d stopped treatment. How about that? Six months after finishing treatment I still have aches and pains, I feel quite sick if I drink strong coffee (which I used to enjoy), feel really tired all the time and can’t sleep properly.

I’ve decided to skip the third part. I made this decision for two reasons. First and foremost, it looked like an extended whinge about side effects. Fair enough, it was a pretty harsh experience, but I’d already talked about side effects in the bit about starting treatment (turning into a very irritable zombie, aches and pains, etc.). I think you can only read, and write, so much about pain and sickness. The second reason is that I was going to wait the six months until I knew the result before I wrote the last piece but, as it turned out, I didn’t have to wait six months, I found out four weeks after finishing treatment. It didn’t work. BUGGER. It’s also meant that this part of the story has taken a while for me to write because it’s taken a while to work out what all this means to me, aside from bugger, that is. So the risk I took in starting the story before I knew how it ended now becomes plain. It might go badly and there’d be no happy ending. Disney didn’t write this one, but on the other hand Stephen King or H.P. Lovecraft didn’t have a hand in it either. In my case it hasn’t ended too badly. There appear to be no serious long term consequences, although I do seem to have permanent spots in my left eye that aren’t going away. As a matter of minor interest, I’ve had a rare side effect that appeared after treatment finished called sarcoidosis (six documented cases worldwide up till 2006!). In my case, it involves lumps on my arms and legs that seem to be going away now, but can also mean lumps in the lung or liver and other much needed organs that may not go away. This is strong stuff.

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I guess you could say that I still don’t feel great about the whole thing. While I was on treatment I was prone to feeling a bit sorry for myself (not too much I hope), but I was also prone to feeling really pissed off with everyone else, and sometimes I was extremely pissed off. I still get a bit of that, I still occasionally give a serve to people who really don’t deserve it. I guess the experience of being extremely irritable has at least given me a better understanding of people who commit murders. I can relate to being suddenly overwhelmed by a passion and then finding you’ve done something you regret. Thankfully that hasn’t included murder, yet. While I was on treatment, I was angry, very, very tired and sick. None of that goes away very quickly. My mood was certainly not helped by being told a month after finishing that I still had hep C. It was a bad, bad time and, although it sounds sickly sweet, I have to say that it was the people around me who made the difference. When I was awake at 4am feeling sick and tired and hacked off that the treatment didn’t work the thing that made me not want to give up was the thought of those around me who’d put up with me over the years and still stuck around. How could I sit around and just feel sorry for myself when these people had calmly put up with me being an idiot in good times and bad? Where did that leave them? That wasn’t the only thing that helped me through of course, but it was important.

my story

Image by Alessandro Pautasso via www.flickr.com

and me

The funny thing is that one of the most helpful things anyone has said came from one of the flakiest and least reliable people that I know. She said, “I bet you’re enjoying feeling normal again”, and the thing is, I am.

I’ve met people who have had treatment, cleared the virus and have never felt better or happier, and I’ve met people who are worse off than me after treatment. What I am telling is my story, and warning that there’s a lot of confusing information out there.

Sure it’s like banging your head against a brick wall and when you stop it feels better, but it does feel better and I appreciate being able to get a job and struggle through life again. “The full catastrophe of life,” as John Mellencamp said.

Some people have converted to the ecstatic religion of hep C treatment, and they feel compelled to spread the revelation. On the other hand there are people who don’t believe anything good about treatment and that’s not right either.

Has anything good come out of doing treatment?

I don’t want this to be read as a horror story which says that treatment is bad and people should never do it. Trite as it sounds, the answer is that it’s a decision that must be made between individuals and their doctor. I think people should only do it if they’re ready for it, and if they and their doctor think it might be worth it. It’s a long, arduous and potentially dangerous, as well as potentially wonderful treatment.

Well, the clinical people are at pains to say that I may have slowed disease progression and I may reduce my chance of liver cancer, but that isn’t impressing me much. Six months after finishing treatment I still feel about 10 years older than I did before I took the combo, but at least people have stopped telling me how old and tired I look. That’s a blessing. After spending 48 weeks being careful about what I ate and how much fluid I drank, I’m sort of into the routine, so I think I’m being more careful about my health than I was before. As I said before, I’m enjoying just being able to do normal things like get a job and go out and, yes, have some wine with dinner. But at the moment that’s about it for the good stuff. So am I saying that anyone considering treatment shouldn’t do it? No, not at all.

I was in a place where I could spare the time, effort and money, and felt I had to give treatment a crack before I got sicker or older (I’m 52). So it didn’t work out for me, but that doesn’t mean it won’t work out for someone else. Talk with people about treatment, talk with people who had treatment, talk with people who haven’t, talk to doctors and nurses about it. For you or someone who you know of who’s considering treatment it could work out well, this has only been my story after all. Best wishes, Gren.

Gren’s prior pieces can be found in ED56, p18 and ED57, p20. ED The Hep C Review

Ed60

March 2008

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Preventing blood-born

Statistics suggest that Iran has the world’s highest rate of opioid drug use. With Australian help it’s star who are injecting drug users. It’s a progressive program that would put Australian prisons to shame. Th speaks to Associate Professor, Kate Dolan who is helping oversee the program.

arely a day goes by without Iran being in the headlines - usually for doing something extreme, often related to Islam and the country’s seemingly uncompromising insistence that religion controls almost every aspect of life. Yet the statistics suggest that Iran has the world’s highest rate of opioid drug use. With Australian help, it’s starting a harm reduction program for female prisoners who are injecting drug users. It’s a progressive program that would put Australian prisons to shame. Associate Professor Kate Dolan of the National Drug and Alcohol Research Centre at the University of NSW has many years experience of working and researching in prisons and has been assisting the Iranians with this program.

Kate Dolan: Out of the 70 million people in Iran about four million use opiates. Mostly drugs are smoked but we think about 200,000 are injecting heroin. Norman Swan: What’s the public health impact? Kate Dolan: Blood-borne viruses are taking off in a big way. About one in four people who inject drugs have HIV. Norman Swan: Is this a recognised problem in Iran or something that’s hidden? Kate Dolan: Iran’s been very up-front. Since 2002 they’ve been tackling HIV with a harm reduction approach and they’ve got a national drug strategy that encompasses harm reduction. They’ve got needle and syringe programs, and they’ve got methadone maintenance. Norman Swan: What’s the reason for Iran having such a high rate of opioid use? Kate Dolan: They do aspire to the west. A lot have trained in the west so I think perhaps taking drugs is seen as being part of that western world. Also, they are very close to Afghanistan.

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Norman Swan: From the outside you find this hard to comprehend because you imagine it is quite a controlled society where women have to cover themselves when they go out. Where does drug use take place in this controlled society? How come it is happening? Kate Dolan: There seems to be two lives that people lead. They lead a very relaxed life behind closed doors and they’ll drink alcohol, they’ll watch cable TV, take drugs and on the outside in the public face they’re very conservative. But there is a double society going on so I’m not surprised there is a big drug problem. Norman Swan: One of the surprises is that a nation which seems to have such external moral controls is adopting a harm reduction approach which involves needle exchanges. Kate Dolan: It does seem quite odd. One of the reasons is that a lot of them have trained in the west and they are very up on public health. Iran has very good health services in prisons which you would also find surprising. Norman Swan: Prisons can be a source of viral epidemics including hep C and yet we don’t have much harm reduction in Australian prisons. What’s the story in prisons in Iran? Kate Dolan: They are getting their act together, it’s always a little bit slow. They’ve actually had two outbreaks of HIV in prison in Iran that alerted them to prison being a problem area, and they have started methadone for men. They have also started a needle exchange in prison, so Iran is ahead of Australia in that regard because we still don’t have needle exchanges in our prisons. I visited Iran in 2003 and visited a female prison and was quite disturbed by the lack of treatment for drug users. It’s taken till now to get some money and get a drug program up and running.

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ne viral infections in Iran

rting a harm reduction program for female prisoners he ABC Radio’s Science Show host, Norman Swan, Primarily we are trying to help the women in prison with a drug problem, offering them counselling and methadone, and when they leave prison, referral to a community clinic. The plan is that once they come out of prison they come to the clinic. There’s a lawyer to help with legal problems, a doctor, nurses, midwives, social workers, psychologists so there’s a whole range of services for these women. Norman Swan: Who’s funding it? Kate Dolan: A Swiss charity called Drosos. They fund a lot of programs that no one else will fund. Norman Swan: When you do a program like this, what are the outcomes you’re looking for? Kate Dolan: We’re looking for improvement in individual health. If a woman had a number of health issues, especially it could be illness that she’s had for years, perhaps just coming to a clinic will help her. For example, we have very low cost dental treatment and a lot of people with drug problems have dental problems. A lot of women also have problems with their family and finances and we have lawyers trying to help them out of those situations. We try to address some of the problems that might keep them in the drug scene. We’ve got a work training program, and a small loans scheme, so all these things could help them to develop their physical and emotional well being and perhaps be ready to give up drugs.

This transcript abridged from ABC Radio’s The Health Report. Listen to it at: http://www.abc.net.au/rn/healthreport/ stories/2007/2116929.htm

The Hep C Review

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March 2008

Image by Hamed Saber via www.flickr.com

• Norman Swan is a science presenter with ABC Radio. Associate Professor Kate Dolan is from the National Drug and Alcohol Research Centre, University of NSW.

feature

DIY piercing - a Your guide to tattoos and body piercings: Karen Hudson reports on why body art should be left to

IY or Do It Yourself is becoming a household phrase. Why pay someone when you can do it yourself? It’s not just a cost issue, but also a matter of pride! To do something with your own two hands, brings a sense of self-worth and satisfaction. DIY book sales have soared in recent years, featuring instructions for everything from car repairs to building your own home. However, tattoos, piercings, brandings, scarification and other body modifications are not do-it-yourself projects. Why not? For the same reason you will not find DIY instructions for surgery or any other, similar medical procedure. Not as easy as it looks Maybe it’s because the procedure seems too simple. What could be easier than sticking a needle through your skin? Girls have been piercing their own ear lobes with nothing but a straight pin and a cork for years. Of course, what you don’t hear about are all the botched jobs, uneven holes and infections resulting from these home piercings. Another thing you need to consider is the evolution of body piercing that has occurred over the years. The body areas that are pierced today, were never considered in earlier days. The more adventurous the piercings become, the more risk and danger goes with them. Some piercings come dangerously close to major arteries and nerves essential to your health, and possibly, even your life. Are you really willing to risk either, for the sake of vanity? Do you have the three E’s? A professional piercer’s key advantages: the three E’s: education, the proper equipment and experience. Education involves knowing, as well as avoiding the parts of the body where important vessels and nerves lie.

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Proper equipment (and procedure) means you get a safe and sterile piercing; one that carries a much lesser risk of bloodborne viral infections like HIV or hep C. There will also be less chance of post-piercing abscess or wound infection. Experience means that the piercer is professional and confident, which will greatly minimise the trauma and pain of the experience. This is why professional piercers go through all the trouble to learn how to do their job properly and work in a professional environment. Many of them pay thousands of dollars to learn how to pierce, and then give a percentage of their earnings to the shop owner where they work. It would be a lot easier for them just to start poking people out of their homes and forget all that other stuff. The reason they don’t, is their respect for you, the potential customer, and for your safety. It’s pretty sad if they care more about your health than you do. Don’t take it from me Kathleen Meister, a U.S. medical writer and editor, wisely advises, “Never attempt to pierce yourself, even with the help of kits intended for this purpose currently sold on the Internet. And don’t allow an untrained friend to do it either. Do-it-yourself piercing is far from sterile, and if you accidentally pierce the wrong place, you could cause severe bleeding or permanent nerve damage.” Couldn’t have said it better myself. For those not paying attention If you are dead set on sticking a needle through your body, for whatever reason that may be, use some common sense: • If you don’t like pain, don’t do it! • Do a thorough search about the body area you are going to pierce • Research, research, and do more research! • Read and learn as much as you can; learn the proper way to sterilise

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big mistake the professionals.

• If there may be blood, doing it in a room with tiled floors is better • Go over it and over it, in your mind • Plan ahead what to do if something goes wrong

When you go to a piercer, it is usually over with very quickly and professionally, but when you do it yourself, it is going to take a lot of time. If you want to get it done quickly and cleanly, don’t do it yourself. Actually, “don’t do it yourself” is the ultimate advice for anyone considering body piercing. • Karen Hudson is the editor and co-author of Chick Ink: 40 Stories of Tattoos -- And the Women Who Wear Them. Abridged from http://tattoo.about.com/cs/ psafety/a/diy_piercings.htm

The Hep C Review

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March 2008

Image by Funkybug via www.flickr.com

• Make sure everything is sterile before you begin, including the room you will be doing it in

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Transplant teen takes on donor’s immune system

A 15-year-old Australian liver transplant patient has defied modern medicine by taking on her donor’s immune system.

emi-Lee Brennan had a liver transplant after she suffered liver failure. Nine months later, doctors at Sydney’s Westmead Children’s Hospital were amazed to find the teenager’s blood group had changed to the donor’s blood type. Further tests revealed that stem cells from the donor liver had penetrated her bone marrow. Dr Michael Stormon says he and his colleagues were even more surprised when they found the girl’s immune system had almost totally been replaced by that of the donor, meaning she no longer had to take anti-rejection drugs.

“They may not, like Demi, change their blood group and change their whole immune system and their bone marrow but there is a small percentage of patients who seem to get away with not needing immunosuppression,” he said. “But the difficulty is trying to identify which ones you should stop immunosuppression on because there’s always that fear and risk that over many months or years, rejection can still occur.” The case has been published in The New England Journal of Medicine. • Abridged from ABC News, 24 Jan 2008

“We consulted widely throughout the hospital and then looked at the medical literature and consulted colleagues around the world to see if anyone had seen this kind of thing before,” he said. “No-one had, so we were stunned and amazed.” Dr Stormon says his team is now trying to identify how the phenomenon happened and whether it can be replicated. “That’s probably easier said than done... I think it’s a long shot,” he said. “I think it’s a unique system of events whereby this happened. “We think there’s a number of different issues: the type of liver failure that she had, some of the drugs that we use early on to suppress the immune system and also that she suffered an infection with a virus called CMV, or cytomegalovirus, which can also suppress the immune system.” Anti-rejection drugs, known as immunosuppresants, have significant side effects, including serious infections and toxic effects on organs. Dr Stormon says doctors are trying to identify which patients could come off the treatment. 40

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Mid-life recovery Middle aged and in bad shape? Health experts say it’s not too late to avoid an early grave, reports Peter Lavelle.

All this is precious little consolation for reaching middle age in terrible shape, headed for an early grave. But maybe not. You can make dramatic improvements in your health and life expectancy in middle age, even if you’ve burnt the candle at both ends over the years, say US researchers. The researchers from the Medical University of South Carolina followed 15,700 adults aged between 45 and 64 for ten years. Every three years, the researchers looked at the participants’ lifestyles – things like whether they smoked, played sport, what they ate and whether they suffered from illness and disease. Specifically, they looked to see how many did one or more of the following things: • Ate at least five fruits and vegetables daily, • Exercised a minimum of 2.5 hours per week, • Kept their body mass index between 18.5 and 30 kg/m2 (body mass index is weight divided by height then squared. It’s a rough measure of obesity – if BMI is over 30, a person is considered obese), • Refrained from smoking. The idea of the study was to see whether adopting these measures reduced the participants’ risk of dying or getting heart disease. At the beginning of the study, only 8.4 percent were doing all four healthy things. As time went on, more of the participants voluntarily adopted healthier lifestyles (without being encouraged). Eating more fruits and vegetables was the most common lifestyle

change, followed by getting more exercise, quitting smoking, and losing extra weight. Six years into the study, a further 970 participants (8.4 percent) had joined the ranks of those who did all four things. At the end of the tenyear study, the researchers calculated that people who switched to doing all four things were 40 percent less likely to have died and 35 percent less likely to have developed heart disease than those who didn’t make the change.

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o you could drink Jack Kerouac under the table; there’s a cigarette in your mouth so often people refer to you as Bogart; you need two seats in an aeroplane, and every year the fast food industry thanks you for personally contributing so much to their financial bottom line.

The benefit was there regardless of the person’s age, race, gender, or whether they had pre-existing disease – a history of high blood pressure, high cholesterol, diabetes, or heart disease. In other words the effect was prompt – evident within four years – despite damage from a reckless lifestyle in the past. The results support other large studies looking at the effects of lifestyle changes on groups of men and women, the researchers say. It’s not an excuse to hit the bottle, the ciggies and the chicken nuggets, thinking that a bit of healthy living down the track will make up for it. But, on the other hand, if you’re regretting those years of hard living, it’s not too late to change. • Peter Lavelle is a staff writer with the ABC. Abridged from ABC Health News 12/7/2007

The Hep C Review

Ed60

March 2008

feature

I have been living with HIV for about seven years and just found out I have hep C. What sort of things do I need to be aware of, and should I get my hep C treated? There is much to think about when you have been diagnosed with hep C, but this is particularly true for people with HIV coinfection. In Australia, around 13 percent of people living with HIV also have hep C, which means about 2,000 people are living with coinfection. How this coinfection can affect your body is still poorly understood, and more research needs to be done in this area. HIV/Hep C coinfection has been associated with a faster rate of hep C disease progression, higher hep C viral loads, and a greater risk of developing cirrhosis and severe liver damage. This may be a result of your immune system’s reduced capacity to control hep C. The impact of hep C on HIV remains unclear, but the majority of studies suggest that having hep C will not accelerate HIV progression. You may have problems with your liver not being fully able to process some HIV medications. Whether you are considering treatment or not, it is important that your GP regularly monitor both conditions to ensure best medical care. When thinking about treatment options, it is important to consider both viruses and carefully plan your treatment with your GP or specialist. People with coinfection can still be treated for both viruses simultaneously, but treatment is more complicated than treating either virus alone. The general hep C combination treatment guidelines (see p54) can often be applied to coinfected people, although treatment may last for a longer period of time.

“Hello Hep C Helpline” is brought to you by the Hep C Helpline team. The questions are based on genuine calls, however some details have been changed to ensure caller anonymity.

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Hep C treatment is often difficult for people, whether they have HIV or not, and it is important to be as prepared as possible. Hep C medications can cause similar side effects to those of HIV drugs. When these drugs are used together, side effects may be more pronounced or occur more regularly. If you have a low CD4 cell count or additional opportunistic illnesses, you may be advised against commencing hep C treatment. It is recommended that you treat any opportunistic infections first, and think about starting HIV medications to increase your CD4 cells before beginning hep C treatment. When deciding whether to undergo treatment, consider what else is going on in your life (e.g. any family, work or study commitments, whether you are emotionally and physically ready, and your ability to access support people or services in your area). It is also important to consider any other medications you may be taking and to be aware of any other health related concerns. Maintaining good health is important in responding to your coinfection. Other things you may want to consider are vaccination for hep A and hep B, getting regular exercise, eating a healthy diet and cutting back or avoiding alcohol and other drugs. Talking to someone can help you with the emotional problems that can arise when living with HIV and hep C. Try to do things that help you cut down on stress, get plenty of rest, and keep a positive attitude. •

Hep C Helpline

my story

Dancing ‘round treatment

ep C has been a passenger in my body for 21 years. It’s not something I think about every day, as having complex post traumatic stress disorder tends to take up a lot of my head space. It was when I moved to Perth in 2006 that I discovered I was now eligible for hep C treatment as the criteria had changed. Having normal ALTs didn’t matter anymore. I used to feel cheated when I wasn’t eligible for treatment. It felt like I had been handed a death sentence. Now that I could have treatment, it felt like an obligation to do it. I have put off two treatment start dates, though, and am now putting off my third. Why is this? I think I’m not really sure that I want to do it anymore. Post traumatic stress disorder has a lot of similar side effects so I’m not sure how ‘unwell’ my hep C makes me. The thought of treatment for 48 weeks (I have genotype 1) possibly making me feel even more unwell when I’ve felt this way for most of my life puts me off. I am aware that I might breeze through treatment and am tired of making excuses as to why I don’t want to start. In a nutshell, I feel like treatment

will steal at least two years of my life and I’m not ready yet. I feel like I’m conquering my demons and am feeling alive for the first time ever. I know it might seem like fuzzy logic but it’s how I feel. I’ve decided to ‘clean my house’ first as I need to feel stronger emotionally, mentally and physically. I’m seeing a dietician as I’m underweight due to anorexia. I also see a psychiatrist, psychologist, counsellor and do art therapy. Is this overkill? No, it’s about me having a life that is a pleasure to live and not a prison to be in. In between the working-on-me stuff, I do things that give me pleasure and am establishing a life in Perth. I’ve put myself under enormous pressure to do treatment right now and it has made me feel more unwell. I struggled with the idea that if it was chemotherapy I’d be doing it regardless of how I felt. I have hep C and not cancer and it’s not directly life threatening to me so that helped me to put things into a more realistic perspective. In getting honest with myself, I’m saying “not yet, maybe never.” I’m giving myself a six month review date and will see where I go from there. Suzy, WA

Image by Iko via www.flickr.com

The Hep C Review

Ed60

March 2008

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Image by Danielle Elston

VOLUNTEERS SOUGHT FOR MEDICAL TRIAL Are you suffering from chronic hepatitis C? Have you failed to respond to standard treatment? If you answered yes to both these questions then you may be interested in participating in a trial studying a new combination treatment. You will be under specialist supervision and incur no out of pocket expenses. The trial will be carried out in conjunction with your own doctors. If you are interested, please contact: The Research Department, Centre for Digestive Diseases Telephone: (02) 9713 4011 (press option ‘3’) or email: clinical_trials@cdd.com.au

www.hepatitisc.org.au

Call for hep C study volunteers The Storr Liver Unit at Westmead Hospital is recruiting people with hep C to take part in a study looking at genetic factors of response to combination antiviral therapy. You should: • Previously or currently have genotype 1 chronic hep C infection. • Previously have completed combination therapy with interferon and ribavirin therapy, IRRESPECTIVE of treatment outcome. There is only one visit, which takes less than 30 minutes and involves the collection of a sample of blood. Please call Dr Vijay Suppiah on 9845 6749 for more information. • This project has been approved by the Sydney West Area Health Service Human Research Ethics Committee.

membership matters You are vital to us - We are here for You Winners are grinners… See your Autumn Member News for more about the individual and organisational winners of our Early Bird prize draw. A big vote of thanks to all those members who got in early. For everyone else, the time is NOW, as renewals fell due on 1 March.

With a little help from our friends… We proudly acknowledge the valuable contribution by organisational members – communitybased, private sector and public sector – to our work benefiting the hepatitis C-affected communities of NSW, and have pleasure in enclosing our current list of member organisations. Will YOUR organisation be on our next list?

2008 Readership survey: we want your feedback People tell us that The Hep C Review is a very good read. We tend to agree, but we value our members’ opinions and endeavour to ensure that our journal continues to give you what you want, not just what we think you need. Please take a few minutes to complete the enclosed centrefold survey and share your thoughts about the Review. Fold it back on itself and return it Freepost to us. The first 200 respondents will be in the running for several juicy prizes.

New hep C treatment resources

his new and exciting resource set includes a series of six easy-read postcards that aim to raise the awareness of hep C treatment across NSW. The six themes portrayed through a casual conversation approach are:

To order supplies of the promotional set, phone the Hep C Helpline on 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) or download a resources order form from www.hepatitisc.org.au/resources.html •

HCCNSW

• hep C treatment exists • support is available • hep C treatment is available in prison • people who inject drugs can access treatment • the cost is minimal • liver biopsy is no longer required to be eligible for treatment. The postcards will be accompanied by matching A3 posters and small stickers.

The Hep C Review

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March 2008

promotions Are you currently on treatment for hep C? Have you recently been on treatment for hep C? Do you have family or friends providing you with support? Would you like to see improved services for support people? We are looking for volunteers to complete a brief survey. Sydney South West Area Health Service is recruiting people on hep C treatment, and their support people, to complete a brief survey on support needs. We will use the information gathered to improve our services for people who are providing support to someone on hep C treatment. We are looking for: • People who have been on hep C antiviral treatment for at least 8 weeks, or completed treatment no more than 3 months ago, and live in Sydney’s inner west. • A family member, partner, friend or other support person who is providing/has provided practical, emotional or other support to the person on treatment.

The surveys are approx. 12 pages long and take 15-20 minutes to complete. We will post surveys for you and your support person to complete and return to us by prepaid post. All surveys are confidential and the information will help us develop resources or services to assist family members or friends who are providing support to people on hep C treatment. You will be reimbursed for your time. Please call Scott Rutter, Hepatitis C Health Promotion Officer – SSWAHS (Inner West) on 9515 5293 for more information. This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney South West Area Health Service.

To organise a time to speak to a volunteer phone

9332 1599 (Sydney) 1800 803 990 (Freecall NSW regional) 46

www.hepatitisc.org.au

halc

legal centre is now able to offer free help with hep C legal issues

HALC is an accredited community legal centre that provides free advocacy and advice. Our solicitors understand the unique legal needs of people living with hep C. We frequently provide assistance in the following areas: • Immigration • Discrimination and vilification • Superannuation, insurance and employment • Privacy and Health Care Complaints • Enduring Power of Attorney and Enduring Guardianship. When advocating on your behalf we understand the importance of confidentiality and practise 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

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ONLINE & CONNECTED ONLINE FORUM The Australasian online internet support forum Hep C Australasia provides a secure and supportive environment for people affected by hep C. Here, you will find conversation threads, chat room, blogs, private messaging and more.

http://hepcaustralasia.org COUNCIL WEBSITE The Hepatitis C Council of NSW website is internationally accredited and contains a wide range of hep C related information. Our quarterly magazine, The Hep C Review, is fully accessible with over 10 years worth of editions downloadable as PDFs.

Conference update “Everyday Lives” The 10th Social Research Conference on HIV, Hepatitis C and Related Diseases. 27-28 March 2008 in Sydney. Abstracts deadline: 30 Nov 2007. Early bird registration by 1 Feb 2008. http://nchsr.arts. unsw.edu.au/conference2008.html “Hepatitis B & C at the Crossroads” The 6th Australasian Conference on Viral Hepatitis. 20-22 October 2008 in Brisbane. Abstracts deadline: 18 July 2008. Early bird registration by 29 Aug 2008. http://hepatitis.org.au/

In addition to detailed downloadable factsheets, the site features search functions and an email “Your Questions Answered” facility. All hep C info resources frequently used in NSW are viewable as PDFs and the site carries research news and reports.

www.hepatitisc.org.au

The Hep C Review

Ed60

March 2008

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hep C bookmarks O

ur hep C bookmarks (below) have proved to be a great way to promote better hep C awareness within the general community. Close to 250,000 have been distributed across NSW via many public and private schools, public libraries, TAFE and university libraries and commercial book stores. Can you help with further distributing the bookmarks? Ideas include: • Taking them to doctors’ surgeries in your area. • Taking them to your local library (to see whether it is a participating library). • Taking them to your local community centre.

HIV & HEP C POSITIVE?

Positive Life (NSW) would like to include your experiences in a new fact sheet dealing with HIV/hep C coinfection.

You will be remunerated for your time. If you are interested in coming along to a discussion group or confidential interview please contact Kathy on 02 9361 6011 or kathyt@plwha.org.au

If you are able to help, we can supply as many bookmarks as you need. Just go to our website and download one of our resources order forms, or phone the Hep C Helpline. • HCCNSW

DO YOU HAVE HEPATITIS C? ARE YOU CURRENTLY EMPLOYED? OR ON LEAVE FOR HEALTH RELATED REASONS? If you live in the Hunter Region of NSW, we would like you to help us with a research project exploring the employment experiences of people living with chronic hepatitis C. The research project is being run through the University of New South Wales. It will involve a confidential interview lasting about an hour at a place and time convenient to you. If you are interested in taking part in this project and would like to know more, please contact Nadine Krejci: • ph / sms: 0431 979 039 • email: nadine.krejci@student.unsw.edu.au

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research update Global estimates of prevalence of HCV infection among people who inject drugs UK - In this paper, we review evidence of HCV prevalence among injecting drug users (IDUs) worldwide. Data on HCV prevalence among IDUs was found in 57 countries and in 152 subnational areas. We found reports of HCV prevalence of at least 50 percent among IDUs in 49 countries or territories.Available regional estimates varied widely, from 10 to 96 percent in Eastern Europe and Central Asia, from 10 to 100 percent in South and South-East Asia, from 34 to 93 percent in East-Asia and the Pacific, from 5 to 60 percent in North Africa and the Middle-East, from 2 to 100 percent in Latin America, from 8 to 90 percent in North America, from 25 to 88 percent in Australia and New Zealand, and from 2 to 93 percent in Western Europe. Only in Colombia and Lebanon were all HCV prevalence estimates below 20 percent. In addition, evidence of HIV/HCV coinfection among IDUs was found in 16 countries. In China, Poland, Puerto Rico, Russia, Spain, Switzerland, Thailand and Vietnam, estimates of the prevalence of HIV/HCV coinfection among IDUs reached 90 percent. Taken together, data suggests high global prevalence of HCV and HIV/HCV coinfection among IDUs. We suggest exploring protective factors in sites of low HCV prevalence. Aceijas C. Rhodes T. Global estimates of prevalence of HCV infection among injecting drug users. International Journal of Drug Policy. 18(5):352-8, 2007 Oct.

Cannabis use increases risk of liver fibrosis USA - According to research at the University of California at San Francisco, daily cannabis use was associated with moderate to severe liver fibrosis in people with hep C. Between 2001 and 2004, 204 participants underwent interviews to assess demographic data, risk factors for HCV, and use of cannabis and alcohol. In addition, virologic testing and liver biopsies were performed. Frequency of cannabis use within the prior 12 months of being interviewed was, daily in 13.7 percent, occasional in 45.1 percent, and never in 41.2 percent. There was no fibrosis in 27.5 percent, mild fibrosis in 55.4 percent and moderate to severe fibrosis in 17.2 percent of subjects. Current daily cannabis use increased the odds of moderate to severe fibrosis by nearly seven-fold. There was no association between current daily cannabis use and mild fibrosis. A major limitation of the study is that only one examination was performed. This limits the ability to establish a temporal relationship between cannabis use and fibrosis stage. The study confirms an earlier French study of 2004 which showed that daily cannabis use was associated with an increased risk for liver fibrosis. Authors conclude that people with HCV should be counselled to reduce or abstain from cannabis use. Ishida JH, et. al. Influence of cannabis use on severity of hepatitis C disease. Clin Gastroenterol Hepatol 2008;6(1):69- 75) Abridged from http://bbsnews.net via www. hcvadvocate.org

In previous readership surveys, many people said that they wanted detailed information on hep C. These ‘research update’ pages attempt to meet this need. Individual articles may sometimes appear to contradict current knowledge but such studies are part of overall scientific debate. They help broaden our overall knowledge and help develop consensus opinion on a particular research topic. The following articles 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 NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). ED

The Hep C Review

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March 2008

research update Combination therapy for 16 or 24 weeks in people with genotypes 2-3 USA - People with hep C virus (HCV) genotype 2 or 3 have sustained virologic response rates of approximately 80 percent after receiving treatment with peginterferon and ribavirin for 24 weeks. We conducted a large, randomised, multinational, non-inferiority trial to determine whether similar efficacy could be achieved with only 16 weeks of treatment with peginterferon alfa-2a and ribavirin. We randomly assigned 1,469 patients with HCV genotype 2 or 3 to receive 180 µg (micrograms) of peginterferon alfa-2a weekly, plus 800 mg of ribavirin daily, for either 16 or 24 weeks. A sustained virologic response was defined as an undetectable serum HCV RNA level 24 weeks after the end of treatment. The study failed to demonstrate that the 16week regimen was better than the 24-week regimen. The sustained virologic response rate was significantly lower in patients treated for 16 weeks than in patients treated for 24 weeks (62 percent vs. 70 percent). Additionally, the rate of relapse (a detectable HCV RNA level during follow-up in people who had undetectable HCV RNA at the end of treatment), was significantly greater in the 16-week group (31 percent, vs. 18 percent in the 24-week group). Among patients with a rapid virologic response (an undetectable HCV RNA level by week 4), sustained virologic response rates were 79 percent in the 16-week group and 85 percent in the 24-week group. In conclusion, treatment with peginterferon and ribavirin for 16 weeks in patients infected with HCV genotype 2 or 3 results in a lower overall sustained virologic response rate than treatment with the standard 24-week regimen. Shiffman ML, et al. Peginterferon Alfa-2a and Ribavirin for 16 or 24 Weeks in HCV Genotype 2 or 3. N Engl J Med 2007;357(2):124-134 • Abridged from HCV Bulletins.

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Hep C virus found to spread directly from cell to cell UK - Scientists looking for an effective treatment for hep C may face an even bigger task than anticipated. Recent studies looking into how the virus spreads in liver tumour cells have demonstrated that the virus uses two different routes, which may explain why the body’s naturally occurring antibodies are ineffective at controlling the virus. Researchers from the Institute for Biomedical Research at the University of Birmingham, have discovered that the virus does not need to be released by a cell into the bloodstream before infecting the next one, but can slip directly from one cell to the other and avoid the blood’s neutralising antibodies or medical attempts to boost antibody production. They also found that the direct cell-to-cell route can transmit virus infectivity independently of a co-receptor molecule called CD81, previously reported to be essential for extracellular virus infection of a cell. “Finding that Hep C uses multiple mechanisms for spreading around the body was not great news,” said Jennifer Timpe, the lead author on the paper. “But this discovery will allow those of us working in this area to move ahead with a better understanding of the virus. We will have to up our game and find other ways of tackling this relentless virus. Future studies will investigate the pathways of cell-cell transfer of infectivity which may reveal new targets for antiviral therapy.” Timpe, JM et. al. Hepatitis C virus cell-cell transmission hepatoma cells in the presence of neutralising antibodies. Hepatology 2008; 47 (1):17-24 • Abridged from www.mrc.ac.uk

research update New upper limit defined for normal ALT in young Australian men

Impact of hep B on quality of life

Australia - Few studies have examined the liver health of at-risk adolescents, or reported associations between liver biochemistry and hep C virus or metabolic liver disease. In this study, researchers Dr David van der Poorten and Professors Dianna Kenny and Jacob George of Sydney University, analysed data from a large group of young male offenders under supervision by the NSW Dept. of Juvenile Justice (DJJ).

Canada - Infection with chronic hep B causes considerable distress to individuals and results in substantial global economic loss, directly through costs of treatment and indirectly, through lost productivity.

They examined the results of liver tests and lipid studies from blood samples of 439 young male offenders serving community orders who agreed to participate in a DJJ health survey between October 2003 and December 2005. They determined the upper normal limit for liver enzymes using the liver tests of the participants at lowest risk of liver disease. These young men had normal BMI, cholesterol, triglycerides, and blood pressure; did not have hep B or hep C infection, or high alcohol consumption. The researchers determined that the upper limit of normal was 28 IU/L for ALT; 32 IU/L for AST; and 29 IU/L for GGT. These are significantly lower than current upper limits for these tests which usually range from 45-55 IU/L. Applying these cutoffs to all participants, they found that 17 percent had raised ALT, and compared to those with normal ALT, “there was a strong association for overweight or obesity,” the authors reported. “To prevent further hepatic damage and to minimise

cardiovascular and diabetes risk, targeted interventions in adolescents at the earliest stages of metabolic dysfunction are a particularly high priority.” The new upper limits also detected 80 percent of the people with hep C. A one-year follow-up blood test of 81 of the original participants showed additional incidents of hep C antibodies, suggesting a new infection rate of at least 3.7 percent per year. The results point to a concerning level of hep C exposure among this population. “Greater education regarding blood-borne viruses, risk factors for transmission and implementing harm minimisation strategies is crucial,” the authors wrote. They also suggested routine hep B vaccination. This study has provided a wealth of clinical and health related data relevant to adolescents. The new definition of normal adolescent ALT allows greater sensitivity in diagnosing early liver disease. By identifying those with heps B or C, and obesity related liver disease, targeted interventions can and should be implemented to minimise future healthrelated morbidity. Van der Poorten D, et. al. Liver disease in adolescents: A cohort study of high risk individuals. Hepatology 2007; 46(6): 175058.

Little information is available on how persons with hep B consider the impact of illness arising from the hep B virus. The objective of this study was to estimate for six increasingly severe health impacts that can occur with chronic hep B infection. The authors interviewed 534 people with chronic hep B and 600 people without the condition in North America, Europe and Asia, making this one of the largest valuations of health impacts ever published. The results show that the chronic hep B and compensated cirrhosis health states have a moderate impact on health related quality of life, and there is a large detrimental effect on quality of life associated with decompensated cirrhosis and hepatocellular carcinoma. Levy AR, et. al. The Impact of Chronic Hepatitis B on Quality of Life: A Multinational Study of Utilities from Infected and Uninfected Persons. Value in Health 2008; Vol 11(5): Issue 5 (OnlineEarly Articles) doi:10.1111/j.15244733.2007.00297.x • Abridged from www. hcvadvocate.org

• Abridged from www. eurekalert.org

The Hep C Review

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March 2008

research update Tattooing in prisons - not such a pretty picture

Eltrombopag to help people with cirrhosis access treatment

Australia - Tattooing in prison represents a unique combination of risk factors for bloodborne virus (BBV) transmission because it is illicitly performed by untrained operators with home made, unsterile, and frequently-shared equipment. It occurs in a setting where a high proportion of people are already infected with hep C virus (HCV) and other BBVs.

USA - Eltrombopag is a new drug that stimulates thrombopoiesis. We evaluated its ability to increase platelet counts and facilitate treatment for hepatitis C virus (HCV) infection in patients with thrombocytopenia associated with HCV-related cirrhosis.

This study measured the frequency of tattoo acquisition by people, inside and outside prison, and the associations between tattooing, injecting drug use, and HCV infection risk. A cross-sectional survey was conducted in correctional facilities in Victoria, Australia. Participants completed a questionnaire that asked about injecting drug use and tattooing and provided a finger-prick blood sample that was tested for HCV antibody. Six hundred and forty-two prisoners participated in the study; 449 had tattoos, of whom 182 (41 percent) had been tattooed in adult or juvenile prison. Of the participants who were not tattooed professionally, 27 percent reported someone using the same needle, and 42 percent reported someone had used the ink before them. Prisoners with a history of drug injection were more likely to have a tattoo and to have acquired a tattoo in prison. The HCV antibody-positive prisoners were more likely to have acquired a tattoo in prison compared with HCV antibody-negative prisoners. Acquiring a tattoo in prison was common and reports of sharing the tattooing needle and ink were high, placing prisoners at risk of acquiring HCV through tattooing in prison. Trials need to be undertaken that evaluate the risk and benefits of legal tattoos in prison. Hellard, ME, et. al. Tattooing in prisons - Not such a pretty picture. Am J Infect Control (Sept 2007), Vol 35(7):477-480. â&#x20AC;˘ Abridged from HCV Bulletin

Seventy-four people with HCV-related cirrhosis and platelet counts of 20,000 to less than 70,000 per cubic millimetre were randomly assigned to receive eltrombopag (30, 50, or 75 mg daily), or placebo daily for four weeks. The primary end point was a platelet count of 100,000 per cubic millimetre or more at week four. Peginterferon and ribavirin could then be initiated, with continuation of eltrombopag or placebo for 12 additional weeks. At week four, platelet counts were increased to 100,000 per cubic millimetre or more in a dosedependent manner among patients for whom these data were available: in 0 of the 17 patients receiving placebo, in 9 of 12 (75 percent) receiving 30 mg of eltrombopag, in 15 of 19 (79 percent) receiving 50 mg of eltrombopag, and in 20 of 21 (95 percent) receiving 75 mg of eltrombopag. Antiviral therapy was initiated in 49 patients (in four of 18 patients receiving placebo, 10 of 14 receiving 30 mg of eltrombopag, 14 of 19 receiving 50 mg of eltrombopag, and 21 of 23 receiving 75 mg of eltrombopag). Twelve weeks of antiviral therapy, with concurrent eltrombopag or placebo, were completed by six percent, 36 percent, 53 percent, and 65 percent of patients receiving placebo, 30 mg, 50 mg, and 75 mg of eltrombopag, respectively. The most common adverse event during the initial four weeks was headache; thereafter, adverse events were those expected with combination therapy. In conclusion, eltrombopag therapy increases platelet counts in patients with thrombocytopenia due to HCV-related cirrhosis, thereby permitting the initiation of antiviral therapy. McHutchison JG, et. al. Eltrombopag for Thrombocytopenia in Patients with Cirrhosis Associated with Hepatitis C. N Engl J Med 2007;357:2227-36. â&#x20AC;˘ Abridged from http://content.nejm.org

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research update Shorter legs linked to troubled livers

Hep C treatment barriers for people who inject

UK - Short legs are linked to an increased risk of liver disease, suggests a new study. The research contributes to a growing body of evidence on the link between leg length and health.

Canada - In the developed world, illicit drug users account for many cases of hep C virus (HCV) infection. Few among this population, however, have received treatment for the disease. The researchers undertook the current study to evaluate factors associated with barriers to treatment and willingness to be treated among illicit drug users who have hep C.

The findings are based on almost 4,300 women between the ages of 60 and 79, who had been randomly selected from 23 UK towns. Standing and seated height were measured to include leg and trunk length, and blood samples were taken to measure levels of four liver enzymes, ALT, GGT, AST and ALP. The women were also quizzed in detail about their medical history, lifestyle, and social class, all of which are likely to influence health and stature. Analysis showed that the longer the leg length, the lower were levels of ALT, GGT, and ALP (the ALT levels, in particular, were lowest among the women with the longest legs). The findings held true after adjusting for influential factors such as age, childhood social class, adult alcohol consumption, exercise, and smoking. The results remained the same after excluding those women who already had liver cancer, diabetes, cardiovascular disease, or osteoporosis. “Our interpretation of the results is that childhood exposures, such as good nutrition that influence growth patterns also influence liver development and therefore levels of liver enzymes in adulthood and/or the propensity for liver damage,” say the authors. Fraser A, et. al. The association between height components (leg and trunk length) and adult levels of liver enzymes. J Epidemiol Community Health 2007; 62: 48-53 • Abridged from http://jech.bmj.com via www. hcvadvocate.org

Convenience sampling was used to recruit participants from two community clinics in Canada. Persons who were over age 18 with a history of illicit drug use completed the questionnaires, which were administered by interviewers. Those who reported testing positive for hep C were asked additional questions on willingness, uptake, and barriers to hep C treatment. Of 188 HCV-positive drug users, 30 (16 percent) had been treated for hep C. Current heroin use and coinfection with HIV were among factors associated with decreased treatment uptake. Of those who had not received hep C treatment, 77 percent indicated a willingness to do so. Factors associated with the willingness to be treated included: not being co-infected with HIV, having recently injected drugs, or reporting problems with physical health. Among the 107 persons who had not sought hep C treatment, the chief reasons cited were lack of information about hep C or knowledge that treatment was available (23 percent), being asymptomatic (20 percent), and concerns over perceived treatment side effects (14 percent). The researchers noted a low uptake of hep C treatment but a high willingness to receive therapy. They suggested an increased focus on education about the long-term consequences of hep C and the availability of effective treatment that are important components for expanding hep C treatment among illicit drug users. Grebely J, et. al. Barriers associated with the treatment of hepatitis C virus infection among illicit drug users. Drug and Alcohol Dependence Vol. 93; (1-2):141-147 • Abridged from www.cdcnpin.org via the Canadian HIV/AIDS Information Centre

The Hep C Review

Ed60

March 2008

interferon-based therapy Peg Interferon alpha & Ribavirin Overview Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily. 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: 1 Blood tests: people must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive). 2 Contraception: women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both a 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 person). Female partners of men undergoing treatment must not be pregnant. 3 Age: people must be aged 18 years or older. 4 Treatment history: people must not have had prior interferon or peg interferon treatment. 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 their 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 only continue treatment after 24 weeks 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 only continue treatment after 24 weeks 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 pretreatment 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 they have cirrhosis or

CAUTION Treatment with interferon alpha 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 Alpha-2b 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 in the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.

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complementary therapies bridging fibrosis - which would have an impact on treatment monitoring. See ‘Monitoring Points’, lower left. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access Interferon-based 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, people should contact their nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see p52). NSW treatment centres 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/counsellor for patients • 24 hour access to medical advice for patients • An established liver clinic • Facilities for safe liver biopsy. Treatment centres exist in most parts of NSW. Phone the Hep C Helpline for the contact details of your nearest centre. NSW Justice Health has nine treatment assessment centres (two within jails for women) and various clinics for monitoring ongoing treatment. • HCCNSW (above info is reviewed by the Commonwealth Department of Health prior to publication).

Complementary therapies 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 sideeffects (Ed 15, p 6). A similar trial, but on a larger scale, was later carried out (Ed 24, p 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 (Ed 45, p 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to: • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hep C? • Is their treatment dangerous if you get the prescription wrong? • How has their 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 they measured the health outcomes of their therapy?

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 your natural therapist about money before you visit them. Many will come to arrangements about payment; perhaps a discounted fee? It is also important to continue seeing your regular doctor and/ 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 well experienced in working with people who have hep C. Additionally, they should be members of a relevant professional association. Phone the Hep C Helpline (see p56) for more information and the contact details of relevant professional associations. • HCCNSW

The Hep C Review

Ed60

March 2008

support / info services NSW Hep C Helpline

Family and relationship counselling

For free, confidential and non-judgmental info and emotional support, phone the NSW Hep C Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues important to you. We also provide referral to local health care and support services: • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers)

If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.

Prisons Hep C Helpline

Sexual health clinics

A special phone service provided through the NSW Hep C Helpline that can be accessed by NSW inmates and prison staff. Call this free and confidential service by using the jail phone, or by calling the numbers above.

Although hep C is not classified as a sexually transmissible illness, these clinics offer confidential pre- and post-test discussions and HCV blood tests. They are listed in your local phone book under ‘sexual health clinics’. They do not need your surname or Medicare card, and keep all medical records private.

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 www.daa.asn.au General Practitioners It is important that you have a well-informed GP who can support your long-term health care needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system. The NSW Hep C Helpline may be able to refer you to doctors and other health care workers in your area who have been involved in hep C training. Alcohol and other drug services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users and 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 drug/alcohol problem. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW) for advice and details on your nearest clinic.

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Family Drug Support FDS provides assistance to families to deal with drug issues in a way that strengthens family relationships. Phone FDS on 1300 368 186.

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. Neighbourhood Centres can be found by phoning your local town Council. Other support and counselling Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. They offer free and confidential short- and long-term counselling, support and advocacy to affected people and their families and/or carers. Traids services are either a face-to-face or telephone basis. For more information, phone 9843 3143 (Traids have a callback policy for NSW regional callers). 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 and for more details, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc. net/ Alternatively, the Hep C Helpline distributes some information resources in various languages.

support / info services Legal advice

Nepean Hep C Support Group

The HIV/AIDS Legal Centre (HALC) assists people with hep C related legal issues. They offer advocacy and advice on a number of problem types including: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and health care complaints; and the appointment of attorneys and guardians. For more information, phone 9206 2060 or 1800 063 060, or visit www.halc.org.au

Guest speakers keeping 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.

Hep Connect Peer Support Program

Offers support and discussion with volunteers who are affected by hep C and have been through treatment. This is a free and confidential phone based service which anyone in NSW can access. To speak with a volunteer please phone 9332 1599 or 1800 803 990 (Freecall from regional NSW). Hep C Australasia 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 on your computer. The program broadcasts every Thursday morning between 10.30 and 11am, (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 Hunter Hep C Support Services A service for all people of the Hunter region living with hep C. It is linked to a team of health care professionals specialising in hep C treatment and care. Based at John Hunter Hospital, New Lambton. For information, please contact Gabrielle Murphy on 4922 3429 or Tracey Jones on 4921 4789.

Northern Rivers Liver Clinic Support Group An opportunity for people contemplating treatment, undergoing treatment, and for those who have completed treatment to get know each other. For more information, please phone 6620 7539. 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 6588 2750 or Alison Mears on 0418 207 939. St Vincent’s Support Group Darlinghurst This treatment-related support group meets on the first Tuesday of each month. St Vincent’s Hospital, Darlinghurst. For information, please contact Zoe Potgieter 8382 2887. Parramatta Support Group A support group for people living with hep C, including those on treatment. From 7pm to 8.30pm, the first Thursday of each month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 158 Marsden St, Parramatta. There is no parking on site. It is a 10 minute walk from Parramatta station. For information, please contact Traids on 9843 3143 or Susan on 9845 5627. 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 five dollars 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 Maria on 9843 3143 or Susan on 9845 5627.

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noticeboard Our loan library Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require. Items are loaned free of charge but you need to pay return postage. Videos/DVDs The Big Combo (HCCNSW, 2002): 20 min DVD with two people who consider pharmaceutical treatment for hep C in very different ways; information on current treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English. Everybody’s Business (MHAHS/ANCAHRD, 2004): Covering hep C and HIV; suitable for health workers working with groups. Comes with a facilitator’s workbook. Available in English, Khmer, Somali, Indonesian and Thai. Look Back Look Forward (Kathy Sport/Ronin Films, 1998): 30 min video with real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers. English. (Members only) Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hep C clinical management, treatment and prognosis. Suitable for health workers. (Members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hep C management, treatment and lifestyle issues, as well as other liver disorders. Suitable for individuals and health workers. (Members only) •

HCCNSW

Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information: http://www. hepatitisc.org.au/hepcouncil/disputes_policy. pdf Or phone us here at the office (see page 3 for our contact details).

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Did you know

that the following factsheets are free to download from our website? Antibody testing Australian snapshot Blood & organ donation Complementary therapies Council history Council overview Diet Disclosure Discrimination Disposing of fits Fatigue First aid & general precautions Genotypes Harm minimisation Heps A B & C HIV coinfection Liver biopsy Liver function testing Liver transplant Natural history Painkillers PCR availability PCR & HCV transmission Pegylated combo therapy Pregnancy, babies & children Prevention Sexual transmission Stress Superannuation Support services Symptoms Tattooing Test counselling Treatment consent Treatment response Treatment side effects Workplace issues

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membership form / renewal / tax invoice An invitation to join or rejoin the Council Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About the Council We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hep C throughout NSW. The Council is overseen by a voluntary Board of Governance, primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.

Privacy policy The Hepatitis C Council of 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. For a copy of the policy, please contact the Council office on 02 9332 1853 (Sydney and non-NSW callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hepatitisc.org.au

1. Please complete A or B or C, then complete other side

A. For people affected by HCV, or other interested people Name Postal address

Suburb/town State

Postcode

Home phone

Email:

B. For individual healthcare or related professionals Name Occupation Postal address

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

Membership

May we list you on our referral database?

Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) must renew their memberships on an annual basis. Membership income assists the Council greatly in its work throughout the year.

Free copies of The Hep C Review required

NSW health care workers One of our services is the NSW Hep C Helpline, an information and support phone line that is 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 HCV update information. Please note that we encourage services on our referral database to become members of the Council.

2 5 10 20 50 80 160

C. For agencies, organisations and companies Name of agency Contact person Position Postal address

Suburb/town

As the most widely-read hep C publication in NSW, targeting both people affected by hep C and health care workers, The Hep C Review is provided free to all members of the Council.

State

Postcode

Work phone

Work fax

Mobile

Email:

In NSW, if your service has clients/patients who may be interested in The Hep C Review, please indicate the number of extra copies you would like to receive on this form.

May we list you on our referral database? Free copies of The Hep C Review required

The Hep C Review

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1 2 5 10 20 50 80 160

March 2008

membership form / renewal / tax invoice 2. Are you a new or existing member? This is the first time I've applied to become a financial member

5. Separate donations are gratefully accepted by the Council.

Donations of $2 and over are tax deductible. If you would like to make a separate donation, please record the amount here:

I'm already a financial member and this is a membership renewal

$.....................................

I currently receive your magazine and I want to become a financial member

6. If paying by credit card, please provide all information in this section.

I'm not sure - please check your database

Card number:

3. Our membership year begins on 1 March and finishes on the last day of February. To become a financial member, please tick one membership fee box, below:

Card type

Waged: for people in paid employment

$25

Cardholder signature:

Concession: for people on government benefits

$10

Zero Fee membership: for people in NSW experiencing severe financial hardship (NSW prison inmates)

Individual health or allied professionals

$40

7. Payment, GST and postage instructions

Community-based agency (Management Committee run)

$50

All Council membership fees are GST exempt but for most people, our membership fees are not tax deductible.

Public/private sector agency

$70

NB: Above are Australian rates only. Overseas applicants please contact the office or consult our website for additional surcharge information.

4. Contact with the Council 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. I'd like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work for the Council

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If paying by cheque or money order, please make payments out to:

Hepatitis C Council of NSW - Membership

Please post payments to Hepatitis C Council of 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 the box (right)

9. Declaration - I accept the objects and rules of the Hepatitis C Council of NSW and apply for membership of the Council. I agree to my personal contact details being held by the Council and used in accordance with the Council's privacy policy. Signed:

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If you would like to obtain a copy of our constitution or privacy policy, please contact the office (02 9332 1853) or visit our website: www.hepatitisc.org.au

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