Hep Review ED66

The Hep C Review Spring

September 2009

Edition 66

Black dogs and hep C treatment

A guide to medical trials: what’s in it for you?

Sticking point: US needle programs Proteins and liver disease examined Regulator ponders curbs on paracetamol The Hep C Review

Edition 66

September 2009

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editor’s intro Council keyhole rapping up another edition and HepCellence weariness descends on me. No, it is

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not the pressure of the job but my involvement in a clinical treatment trial of a new protease inhibitor (see page 23). I’m yet to grow a second head and breathe fire as the side effects are subtle at this stage: body aches, nausea, insomnia and a tiredness that can descend without warning like an English Channel fog.

Coincidentally, in this edition you’ll find two commissioned articles: one on deciding on and being part of clinical trials, the other about hep C treatment and the potential mood swing side effects. I’ve got to say that this article almost bought a tear to my eye, taking me back four years to my previous stab at treatment and all the to-ings and fro-ings involved.

So, this edition does strikes a bit of a chord with me – but I’m hoping that all readers will likewise find it a good read. Aside from the two commissioned articles, there’s lots of other good content. Look for: Sticking point - news on US needle programs; Protein diet and liver disease examined; Juz’s story: from childhood self medication to adult self health management; and Andrea’s story: my uncle.

And don’t forget to fax, email, phone or write in if you have any suggestions for future content.

We seek to be responsive to your interests and involve you in the magazine’s production process.

Speaking of which, we have a vacancy on our Editorial Committee for any reader who wants to play more of a role. Contact me on paulh@ hepatitisc.org.au for more information.

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The Hepatitis C Council of NSW is currently piloting a new project that aims to expand the education and development work we do with other organisations: the HepCellence project.

In contrast to more traditional approaches to workforce development that focus on ‘one-stop’ training, HepCellence is about collaboration; the idea being that the Council works in partnership with individual organisations to develop programs tailored to meet their specific needs. This means we work together with an organisation over an extended period to not only identify needs and challenges in terms of hep C service delivery, but endeavour to build on the unique strengths, skills and expertise of workers.

The overall aim of HepCellence is to identify, explore, and help put into practice, ways of working that best meet the needs of people affected by hep C. In order to develop the model we have partnered with two organisations for the pilot – Kirketon Road Centre (KRC) and Cabramatta Community Centre (CCC).

KRC is a comprehensive medical, counselling and social welfare service located in Sydney’s Kings Cross. Being an internationally regarded model of best-practice in drug health service delivery, partnering with KRC on the HepCellence project has provided an invaluable learning opportunity for the Council. In addition to developing and refining the HepCellence model, familiarising ourselves with the holistic, non-judgemental, client-centred model championed by KRC has afforded us key insights into what constitutes successful hep C service provision.

CCC provides an interesting contrast to our work with KRC. Offering a wide range of services to diverse communities in South Western Sydney’s

Ed.

(Continued on page 44)

Weblink of the month

Our weblink of the month is our very own, recently revamped and launched www.hepc.org.au Check out more promotion on page 42.

We acknowledge the people of the various Aboriginal nations across NSW as the traditional custodians of the land on which we live.

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Cover pic by Pepe50 via www.flickr.com

acknowledgements Seeking your story

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang Gideon Warhaft Scott West

Personal stories provide a good balance to our information articles.

Please consider writing in with your story. Published articles attract a $50 payment.

Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published.

Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.

The HCR medical and research advisors: Dr David Baker Prof Geoff McCaughan Prof Bob Batey Mr Tadgh McMahon Dr Cathy Pell Ms Christine Berle Ms Sallie Cairnduff Ms Ses Salmond A/Prof Carla Treloar Prof Yvonne Cossart A/Prof Greg Dore Dr Ingrid van Beek Prof Geoff Farrell Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Andi Andronicos Prue Astill Sarah Bowman Judith Campbell Margaret Hancock Aviva Shifreen Maureen Steel Cindy Tucker

Seeking your ideas We want the magazine to remain relevant to you, the readers. If you have any ideas we can use as topics for our commissioned articles (e.g. see page 16), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’.

Just phone and ask for Paul, or email hcr@hepatitisc.org.au or text us on 0404 440 103

Comic: Andrew Marlton Contact The Hep C Review: ph 02 9332 1853 fax 02 9332 1730 email hcr@hepatitisc.org.au text/mobile 0404 440 103 post PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney

Audrey Lamb Forum and Annual General Meeting Thursday 12 November 2009 Please come along to hear more about current treatment trials and how they are likely to change the face of hepatitis C treatment. See further information on page 45.

How do you rate our AGMs and other events?

Give Gabrielle a call on 02 9332 1853 for a copy of a short survey, or download it at www.hepc.org.au Your returned survey will go in a draw for a $50 gift card.

Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) The Hepatitis C Council of NSW is an independent community-based, nonprofit membership organisation. We are funded by NSW Health.

Aside from HCCNSW editorial comment, the views expressed in this magazine and in any flyers enclosed with it are not necessarily those of the Hepatitis C Council of NSW or our funding body.

Contributions to The Hep C Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided The Hep C Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons.

ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are stock photo models and the images are used for illustrative purposes only. The models have no connection to hep C.

The Hep C Review

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September 2009

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contents Letters Scare tactics and hep C mortality rates 5 News Colorado scrub tech charged in hep C case 5 Disease factories by the dozens 6 Las Vegas outbreak spurs new laws 6 One in eight has hep C in Chinese village 7 Disabled status near for hepatitis 7 Jazzy’s award winning hep C film 8 Pressure to reform harmful drug policies 8 Three primates, antibodies and future hep C research 9 Future US surge in CALD liver cancer 9 Germany approves prescribed heroin to long-time drug dependents 10 UK hep C trust launches pharmacy testing pilot 10 UK spends big on prison methadone vending machines 11 Hydroxycut recall due to liver injuries 11 Epileptic drug calms restless legs 12 Regulator ponders curbs on paracetamol 12 UN backs Australia’s Asia AIDS fight 13 Big increase forecast in Aussie liver cancer 13 Proposed change of Council name 14 New national strategies for hepatitis 14 Staff postings at Council 15 Features Black dogs and hep C treatment 16 Kicking back with Marianne Faithfull, singer, songwriter and actress 19 A guide to medical trials: what’s in it for you? 20 Social determinants of health: social support 24 Drugs take toll inside NSW prisons 26 Sticking point: US needle programs 27 World Hepatitis Alliance activities 36 Streetshot photo exhibit boosts hep C awareness 38 The little book of hep B facts 41 My story Juz’s story: from childhood self medication to adult self health management 34 Elisabeth’s story: having everything but wanting something special 40 Andrea’s story: my uncle 42 Opinion Harm reduction and lawmakers 28 Drug decriminalisation in Portugal: lessons for creating fair and successful drug policies 29

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Effective care, not criminalisation

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Promotions Resource of the month – What you need to know: a guide to hepatitis C 6 Nominations for Hepatitis Australia board 33 www.hepc.org.au new website promo 42 halc legal centre 44 Access all areas 44 Paediatric viral hepatitis clinic 44 Hep C Council support group meetings 46 Hep Connect peer support service 46 Transmission Magazine 47 RPA hospital sexual health clinic 47 Hep C bookmarks 48 Grass roots to action: National hepatitis health promotion conference 48 Mainliners 11th international hep C conference 58 Research updates Hypertension drug could reverse hep C liver disease 49 Genotypes and risk factors for hep C in the Gaza strip 49 Protein diet and liver disease examined 50 Hep C taking longer to catch among people in developed countries who inject drugs 50 The bug that can blast away cancer 51 High soybean consumption increases risk of liver cancer in women 51 Women with hypothyroidism at increased risk of liver cancer 52 Hep C increases the risk of heart disease 52 Critiquing delivery of hep C treatment in OPT clinics 53 Getting ready for an Aussie hep C vaccine?

53 Regular features Council keyhole – HepCellence project 2 Q&A – What is liver fibrosis and what causes it? 15 Harm reduction poster – Blood circulation 30 Hello Hep C Helpline – methadone and hep C treatment 43 Membership matters 45 A historical perspective 45 Interferon-based treatment 54 Complementary medicine 55 Support and information services 56 Membership form / renewal / tax invoice 59

Scare tactics and hep C mortality rates I work on BBV prevention health education and I’ve come to the conclusion that scare tactics seem to work with some issues. At a gut level, I don’t like this, but I think it’s true. For example, everyone remembers the HIV grim reaper from the 80’s. We have poster at work which shows someone’s hand with fingers missing from not filtering pills and another one that shows a close up of a needle tip that has been used a number of times and is more bent and barbed in each photo. People respond to these. So I started thinking about what scare tactics could be used for hep C prevention.

As you know, most users feel a sense of inevitability around hep C, either that they can’t avoid it, or that it doesn’t seem to have a huge impact on people who have it anyway. I don’t think our clients are aware that people with hep C are starting to die from liver failure or cancer and that this number will increase. I think that this needs to be pointed out. I realise that this is controversial, but stuff like this seems to have impact.

A further issue is that, I can’t actually find hep C related mortality rates in Australia. I checked the surveillance reports from NCHECR and they report on liver transplants but not mortality. This seems like a bit of a worry.

Maureen, Marrickville Thanks for your letter, Maureen. There is a need for more campaigns and awareness initiatives.

The Hepatitis C Council NSW is keen to see any ideas debated at health promotion and harm reduction conferences and workshops.

Likewise, we are keen to see development of statistics gathering mechanisms so that there is evidence that informs an effective overall hep C response. We have initiated discussion with key experts and research centres highlighting the need for action in this area. Ed.

news

Stock photo - image via Google Images

letters

Colorado scrub tech charged in hep C case USA – Denver’s Rose Medical Centre says it has asked every patient who had surgery there over a six-month period to come in for a blood test.

The action comes amid allegations that a former technician exposed up to 6,000 people to hep C as she fed her dependence to painkillers. Twentysix-year-old Kristen Diane Parker is accused of injecting herself with painkillers meant for patients, then filling the used syringes with saline solution.

Colorado medical officials say thousands of patients were exposed and nine have tested positive for hep C. The hospital says Parker tested positive for hep C before she was hired last October but says people with that ailment are not prohibited from working there. She was fired in April after testing positive for the painkiller.

Her lawyer says she didn’t know she had hepatitis until police contacted her in April. If convicted on various tampering and drug charges, she could get a maximum of 34 years in prison.

• Abridged from www.ktiv.com/Global/story. asp?S=10652933 (6 July 2009).

Other medical cases are discussed in Ed59 (pages 11 & 16), Ed57 (page 13), Ed55 (page 12), Ed52 (page 10) and Ed51 (page 11).

In comparison to other transmission routes, very few cases of hep C transmission occur in medical settings. Ed.

The Hep C Review

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news Disease factories by the dozens

Las Vegas outbreak spurs new laws

India – More disease factories churning out tonnes of biomedical waste were unearthed from Ahmedabad’s warehouses exposing a network of suppliers and buyers involved in the business.

USA – Officials have praised new laws spurred by a past hep C outbreak in Las Vegas that led to the largest patient notification in US history, saying it will lessen the chance of a similar problem in the future.

Raids that continued indicated that contaminated waste was not only being used as raw material in the plastics industry, but also recycled back into the medical industry.

Five measures dealing with the issue were passed this session by Nevada lawmakers. The bills surfaced after more than 50,000 patients at two now-closed outpatient clinics were notified last year that they may have been exposed to bloodborne diseases by shoddy injection practices.

Nine people contracted hepatitis C, and more than 100 other cases may be linked to the clinics.

Twenty-five tonnes of garbage containing used syringes, needles, multiple dose vials, IV sets, medicine bottles and even paediatric droppers, neatly stacked to be recycled for reuse, tumbled out from closed warehouses raided by authorities.

Authorities also seized inventories of suppliers of this deadly waste. Investigations revealed that the inventory included names of pharmaceutical companies, laboratories and other suppliers and buyers from other Indian states especially Delhi and Haryana.

“It seems that part of this waste was apparently washed, repackaged and recycled back into the medical industry,” Dr Suhas Kulkarni, medical health officer of Ahmedabad Municipal Corporation said.

As a result of the Ahmedabad raids, over 12 warehouses in Chamundanagar were raided, unearthing 50 tonnes of contaminated medical waste.

Authorities sprang into action after people started dying of a mutant virus strain of hep B in Modasa, Sabarkantha, spread by recycled syringes. Links of this racket led to the deadly business in Ahmedabad.

Meanwhile, the death toll from the hep B outbreak in Sabarkantha district climbed to 56 with three more deaths reported.

• Abridged from http://timesofindia.indiatimes. com/Ahmedabad/Death-factories-by-thedozens/articleshow/4206894.cms (1 Mar 2009).

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Doctors and nurses at the two endoscopy centres were found to have been spreading the debilitating liver virus by reusing syringes and vials of anaesthesia.

• Abridged from www.mercurynews.com/news/ ci_12490632?nclick_check=1 (31 May 2009).

Other medical cases are discussed in Ed59 (pages 11 & 16), Ed57 (page 13), Ed55 (page 12), Ed52 (page 10) and Ed51 (page 11).

In Australia, in comparison to other transmission routes, almost no hep C is transmitted in medical settings. Ed.

Resource of the mon

What you need to know: a gu We recently reviewed and revamped our detailed information booklet. This 84 page booklet has been written to help you understand more about hep C. Although the booklet has been produced for people who have hep C, it will also be useful for partners, friends, family members, health professionals and anyone else who wants to know more about hep C. It contains eight main sections: introducing hep C / the effects of hep C / hep C transmission / reducing transmission / testing, monitoring and treatment / managing your health / legal issues / personal issues. Also included are a referrals section, a glossary and recommended reading page.

news Disabled status near for hepatitis

One in eight has hep C in Chinese village

Japan – People with severe liver illness may be allowed to be certified as physically disabled, which would allow them to receive special state support in the form of tax cuts, public transportation discounts and welfare services, health officials said.

China – At least 56 people in two adjacent villages in northeast China’s Heilongjiang Province were diagnosed with hep C, health authorities said.

Fifty-six out of 408 people who voluntarily had blood tests in Ninggu and Gucheng villages, were confirmed to have hep C, according to the Mudanjiang City Disease Control and Prevention Centre. Ninggu and Gucheng, have a population of 579.

The centre said the village clinic doctor used medical equipment which failed to have strict disinfection.

Villagers said the exact number of the infected cases should be bigger as some refused to take the tests for fear of discrimination. Some put the total number at 98.

• Abridged from http://news.xinhuanet.com/ english/2009-06/28/content_11613848.htm (28 June 2009).

The Health, Labor and Welfare Ministry could grant the status to an estimated 30,000 to 50,000 people with liver disease.

A panel at the ministry agreed that people who are suffering from all types of liver disorders and have serious restrictions on their daily lives without expectations for being cured, should basically be entitled to the certificates.

People have sued the government and pharmaceutical companies for the right to be certified as disabled ever since a nationwide scandal over tainted blood products erupted in the 1990s, in which it was discovered that at least 10,000 people were negligently infected with hep C. • Abridged from http://search.japantimes.co.jp/ cgi-bin/nn20090531a6.html (31 May 2009).

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uide to hepatitis C In print since 1996, the booklet is comprehensive and up-to-date. For example, it includes information on fibroscan, the new Australian alcohol guidelines and the importance of rapid/early response to hep C treatment.

The booklet has been recently launched and free supplies are available across NSW. • To order supplies, go to www. hepc.org.au then navigate to Info Resources, then to our Faxback Order Form.

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news Jazzy’s awardwinning hep C film UK – Teenager, Jazzy de Lisser, was born with hep C and just six months ago heard she was too ill to continue treatment. Jazzy was three when mum Serena Bute began to worry something wasn’t quite right. Tests showed she had been born with the disease.

“I had to just get on with my life,” says Jazzy, who has just won a film competition backed by the Daily Mirror with a documentary about her long battle with hep C. “When I was about 13 I researched websites and found them so unfriendly and negative. I began to really worry about what I had.”

Jazzy went to King’s College Hospital in London for an update on her condition where doctors said the scarring on her liver was getting worse.

“The doctor said Jazzy had the liver of a 50-yearold man who had been drinking and taking drugs his whole life,” says mum Serena.

Jazzy was inspired by documentary-maker Mel Agace to record a video diary of her treatment over 15 months. Then she heard about the launch of the Daily Mirror, MediaBox and Bebo Your Film09 competition. It aimed to find young filmmakers to make a documentary about something important in their lives.

Ten people were selected to take part in special workshops with Bafta mentors to transform their ideas into films.

Jazzy turned the diary into her award-winning short film My Story of C, which captures the highs and lows of her treatment – from promising test results, lying in bed in agony, to blazing rows with her mum.

Watch it here: www.mirror.co.uk/ ?bcpid=18731164001&bctid=25918390001 • By Hannah Wood. Abridged from www. mirror.co.uk/life-style/real-life/2009/06/26/ teenager-jazzy-de-lisser-s-award-winningfilm-about-living-with-killer-disease-hepatitisc-115875-21471652/ (26 June 2009).

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Pressure to reform harmful drug policies UK – As the United Nations launches the 2009 World Drug Report, more than 40 international groups and experts worldwide have issued a call to action that presses governments to adopt a humane approach to drug policy. The call to action urges policies to be based on scientific and medical research rather than politics.

The United Nations Office on Drugs and Crime conceded in its just-released World Drug Report 2009 that international drug control has produced several unintended consequences, the most formidable of which is the creation of a lucrative black market for drugs and the violence and corruption it generates, said Dr Alex Wodak, President of the Australian Drug Law Reform Foundation.

“These unintended consequences might be considered worthwhile if drug prohibition actually worked. But the same report concedes that the quantity of heroin available for global consumption increased 71% from 2005 to 2007.

The report shows that over the last 5-7 years, the retail price of heroin fell 56% in the USA and 62% in Western Europe,” Dr Wodak said.

Rather than receiving treatment, millions of nonviolent drug users are languishing in prisons as a result of current drug policies. The drug trade continues to grow while families are torn apart by the global war on drugs. As the HIV/AIDS crisis spreads, policies that drive away drug users are creating public health disasters.

“The threshold steps are to finally start admitting that the drug problem is fundamentally a health and social issue and then to start funding effective interventions properly,” Dr Wodak said.

The call to action urges governments to support needle programs, substitution therapy, and decriminalisation of possession for personal use.

Drug control measures must respect human rights with penalties that are proportional and humane.

• Abridged from www.idpc.net/alerts/call-toaction-reform-global-drug-policy (24 June 2009).

news Future US surge in CALD liver cancer

Three primates, antibodies and a future for hep C USA – Imagine a future when someone with a new hep C infection could be treated with special hep C antibodies that neutralise the virus.

Gone would be chronic hep C and many of its associated complications like cirrhosis and liver failure. It sounds too good to be true, but a team of scientists have done something very similar with animals. In due time, maybe this can be successful on people.

The scientists, associated with the University of Massachusetts Medical School, developed a novel antibody, called MBL-HCV1, that could tightly bind to the outer coat of a hep C virus in an artificial environment (in vitro) and neutralise it.

Since living systems are more complex, the next step was to see how the antibody acted in animals.

Three primates (chimpanzees) were exposed to hep C viruses, but were studied under different conditions. One had previously received a low dose of the new antibody. Another had previously received a higher dose of the antibody.

One received no antibody. Only the primate that received the higher dose of antibody was protected. They other two developed hep C infections. Furthermore, after the scientists gave the no-antibody primate a high dose, the hep C infection disappeared.

This research is still a long way from being available in the clinic, but it shows that scientists are hot on the trail of better treatments for hep C. This could potentially be a wonderful therapy, both preventative and in newly diagnosed patients. According to the researchers, it could have a tremendous use in protecting liver transplant patients (due to chronic hep C) from re-infection with the hep C virus.

This research was presented in April 2009 at EASL, the 44th Annual Meeting of the European Association for the Study of the Liver.

• Abridged from http://hepatitis.about. com/b/2009/05/16/three-primates-and-anantibody.htm (16 May 2009).

USA – New liver cancer cases among Asian Americans and Pacific Islanders are expected to soar in coming years, the result of persistently higher rates of chronic hep B, a leading cause of the disease.

The University of California Davis Cancer Center is working to address the disproportionate burden of liver cancer on Asian Americans and Pacific Islanders. Their research is expected to yield important findings to reduce the death rates for liver cancer among all people of colour.

A recent report from the Journal of Clinical Oncology determined that by 2030, the number of new liver cancer cases among Asian Americans and Pacific Islanders will increase by 134% compared to an increase of 28% among whites.

Asian Americans and Pacific Islanders most commonly get liver cancer through hep B, which in these populations is typically passed from mother to baby. Symptoms do not typically appear until decades later when the infection becomes liver cancer.

World Hepatitis Day (May 19) and Asian Pacific American Heritage Month (May) provided an opportunity to raise awareness of the projected rise in liver cancer cases among Asians and Pacific Islanders and to highlight important information about the control of hep B. Chronic hep B can result in long-term health problems, including liver damage, liver failure and liver cancer. An estimated two million Americans are thought to be infected with hepatitis B. Liver cancer is a conspicuous cancer health disparity, being most common among Asian Americans and Pacific Islanders and other people of colour, and is least common among non-Hispanic whites.

• Abridged from www.healthnewsdigest.com/ news/Cancer_Issues_660/Projected_Surge_ in_Liver_Cancer_Among_Asian_American_ and_Pacific_Islanders.shtml (19 May 2009).

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news Germany approves prescribed heroin to long-time drug dependents Germany – The German Parliament has approved a new law that will allow doctors to prescribe synthetic heroin to people with long-term drug dependence in an effort to reduce crime, overdose deaths and the spread of bloodborne viruses.

The new law allows people aged over 23, who have used heroin or other opioid drugs illegally for more than five years, and have failed at other rehab programs to receive pharmaceutical heroin in specialised treatment centres. The legislation follows a pilot project conducted in seven German cities between 2002 and 2006 that proved successful in reducing crime, bloodborne viruses and overdose fatalities among people who had failed in previous efforts to quit heroin.

The German results were consistent with those of similar projects in Canada, the Netherlands, Spain, Switzerland and the United Kingdom.

Last year Switzerland similarly legalised heroin prescription in a public referendum.

“The success of the German heroin prescription projects, combined with similar results in other countries, leaves little question that heroin prescription could reduce crime, bloodborne viruses and overdose fatalities in the United States as well,” Ethan Nadelmann, executive director of the Drug Policy Alliance said.

“And the vote in Germany, combined with similar evidence of public support in other countries shows that the public will support even controversial drug policies when they are given a chance to prove themselves.”

“There is no question that heroin prescription programs are needed and long overdue in the USA. All that stands in the way is politics and the backward assumption that it can never happen in the United States.”

• Abridged from www.drugpolicy.org/news/ pressroom/pressrelease/pr052908.cfm (28 May 2009).

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UK hep C trust launches pharmacy testing pilot UK – Selected pharmacies across the UK are offering on demand, dry-blood spot testing for heps B and C, under a new scheme designed to boost diagnosis rates and therefore potentially save thousands of lives.

Between 250,000-466,000 people are thought to be living with hep C in the UK today, but only around 100,000 have actually been diagnosed as many are simply unaware they have been infected.

Both heps B and C do not have symptoms for many years but, if left untreated, both can lead to liver cirrhosis, liver cancer and eventually death, so diagnosing these diseases as early as possible is crucial to boosting treatment outcomes and also to preventing their further spread.

Under a new scheme carried out by the Hepatitis C Trust in partnership with five Primary Care Trusts (City & Hackney, Nottingham, Sandwell, Tameside & Glossop, Isle of Wight), 19 pharmacies across the UK have opened their doors to viral hepatitis testing for three months starting on World Hepatitis Day. “Too many people are developing life-threatening liver disease because they are being diagnosed too late,” said Charles Gore, Chief Executive of The Hepatitis C Trust, explaining the rationale for the scheme, and he stressed that free, easily accessible hepatitis testing could help to save “countless lives”.

Although the scheme is only set to run for a three-month period, the Hepatitis C Trust says it hopes to make pharmacy testing available to everyone in the long term, in order to address the urgent need to improve on the low diagnosis rates for these life-threatening diseases and thereby help patients get treatment faster.

• Abridged from www.hepctrust.org.uk/ news/2009/May/Hepatitis+screening+pilot+la unched+in+five+PCTs.htm (28 May 2009).

It is estimated that 1% of the UK population has chronic hep C. This would equate to around 600,000 people. Ed.

UK spends big on prison methadone vending machines UK – The UK justice minister recently reported that A$8 million has been spent on installing methadone vending machines in 57 UK prisons.

The machines allow prisoners to receive a personalised dose of methadone automatically by giving a fingerprint or iris scan.

The plan is to have the machines in 70 out of the 140 prisons in England and Wales.

A spokesman from the UK Department of Health said that the department spends around A$487 million on offender health each year – with A$81 million going on drug treatment programmes.

He said: “Methadone dispensers are a safe and secure method for providing a prescribed treatment. They can only be accessed by the person who has been clinically assessed as needing methadone and that person is recognised by a biometric marker, such as their iris.”

• Abridged from www.telegraph.co.uk/news/ newstopics/politics/lawandorder/5834299/ Government-spends-4m-on-methadonevending-machines-for-prisons.html (16 July 2009).

For background information on prisons harm reduction, see Ed 65, page 51. Ed.

news Hydroxycut recall due to liver injuries USA – Fourteen Hydroxycut products, marketed as fat burners, low-cost diet aids, and energy enhancers, are being recalled voluntarily by the manufacturer after the US Food and Drugs Administration (FDA) received 23 reports of serious liver injuries ranging from jaundice to death.

Dr Linda Katz, of the FDA’s Center for Food Safety and Applied Nutrition, said the agency urges consumers to discontinue use of the Hydroxycut products. Not affected by the recall are Hydroxycut Cleanse and Hoodia products.

The 23 reports of adverse effects include liver damage, elevated liver enzymes (which indicates potential liver damage) and liver damage requiring a transplant. A 19-year-old man died after using Hydroxycut. “The death occurred in 2007,” Katz says, “and was reported to the agency at the end of March 2009.”

Hydroxycut products contain a variety of ingredients. The FDA has not yet determined which ingredients or doses are associated with the liver problems, according to Katz.

Other reported health problems include cardiovascular problems, seizures and serious muscle damage that can cause kidney failure.

• Abridged from www. medscape.com/viewarticle/ 702283?src=mp&spon=20&uac=63319AR (4 May 2009).

For information about hydroxycut products in Australia, please visit http://www.tga.gov. au/alerts/medicines/hydroxycut.htm or phone the Hep C Helpline.

Want daily hep C news updates? Follow us on Twitter You’ll get the first 140 characters (a sentence or two) and a link to each news items as they are put up daily on our website. You’ll also get the link to the original source of the news item.

It’s as easy as one, two three!

1) Open a Twitter account and set it up so updates go to your mobile phone.

2) In Twitter, click on ‘find people’ and search for ‘hepCnsw’.

3) Click on the ‘follow’ button.

The Hep C Review

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September 2009

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Spain – The anti-seizure drug pregabalin appears to help people with restless legs syndrome [an often reported symptom of hep C] get a better night’s sleep. That’s according to the findings of a clinical trial presented at the annual meeting of the American Academy of Neurology.

Dr Diego Garcia-Borreguero, director of the Sleep Research Institute in Madrid, Spain, noted that pregabalin (Lyrica) was well tolerated by patients with restless legs syndrome and is a promising alternative to current treatments because of its superior effects on quality of sleep.

The study involved 58 patients with restless legs syndrome of unknown origin. After two weeks on a placebo, 30 patients were assigned to receive pregabalin (150 to 600 milligrams daily) and 28 remained on the placebo for 12 weeks.

Restless legs syndrome severity was determined periodically using the International Restless Legs Syndrome Rating Scale, as well as other disease severity measures. Sleep studies were performed at the beginning of the study and again after 12 weeks.

According to Garcia-Borreguero and colleagues, the change in International Restless Legs Syndrome Rating Scale scores was significantly more pronounced with pregabalin than with placebo.

Pregabalin treatment also improved the sleep patterns in restless legs syndrome patients, who had a significant increase in time spent in deep slow wave Stage 3 sleep and a decrease in time spent in lighter stage 1 or 2 sleep, compared with the patients on placebo.

Due to its superior therapeutic effects on sleep, Garcia-Borreguero and colleagues conclude, pregabalin is a promising alternative to current drug treatments for restless legs syndrome.

• Abridged from www.reuters.com/article/ healthNews/idUSTRE53S7UR20090429 (29 April 2009).

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Stock photo - image via Google Images

news Epileptic drug calms restless legs

Regulator ponders curbs on use of paracetamol Australia – The Federal Government will look at restricting the availability of the common painkiller paracetamol and banning powerful prescription drugs that contain paracetamol after US regulators were warned of the risk of liver failure and fatal overdose.

The Therapeutic Goods Association says it will review its rules allowing 4000 milligrams of paracetamol to be taken by adults each day and permit a single dose of 1000 milligrams to be sold over the counter.

While paracetamol is considered a safe medicine for pain relief and fever reduction when used as directed, it has been a leading cause of liver injury for more than a decade through accidental or deliberate overdose.

The panel said consumers could take too much of the drug either by ingesting the wrong dose or using more than one medicine containing paracetamol at a time.

A spokeswoman for the TGA said the regulator had carried out reviews of paracetamol in 1998 and 2003, which led to warnings over excessive use.

“The TGA will review the current use and misuse of paracetamol-containing medicines in Australia to identify if any regulatory action is warranted and will seek the advice of its over-the-counter expert advisory committee if necessary,” she said.

• By Louise Hall and Julia Medew. Abridged from www.smh.com.au/national/regulatorponders-curbs-on-use-of-paracetamol20090701-d59c.html (2 July 2009).

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UN backs Australia’s Asia AIDS fight

Big increase forecast in Aussie liver cancer

Australia –The United Nations says Australia’s efforts to halt the spread of HIV/AIDS in Asia with policies advocating needle programs and drug substitution are providing a model for nations throughout the region.

Australia – A rising prevalence of chronic hep B and C in Australia, less than optimal screening and poor uptake of antiviral treatment are contributing to a significant rise in liver cancer in Australia, according to research published in Cancer Forum.

UNAIDS Asia Pacific director Prasada Rao said Australia’s calls for Asian states to take a fresh look at their drug laws and strategies to stem the spread of HIV/AIDS was gaining ground.

Australia has stepped up its calls for harm reduction strategies that include needle programs among narcotic users in countries where tough penalties for possession and trafficking of narcotics, especially heroin, include the death penalty.

“Australia is a good model for harm reduction programs and also for looking at drug laws and revamping them,” Mr Rao said.

The UN support for Australia came as Australia’s Parliamentary Secretary for International Development Assistance Bob McMullan announced additional spending of A$640,000 to support non-government organisations working in Asia.

“The story is we need to halt the spread of HIV and it’s prevention that counts. Of course we have to provide good treatment to people who have HIV and there are five million in this region – so that’s a big challenge,” he said.

The Australian government is currently providing an estimated A$130 million for HIV activities over 2008-2009 through multilateral, bilateral and regional channels. It is expected that by 2011, Australia will have invested A$1 billion in HIV/AIDS over the decade.

• Abridged from www.smh.com.au/world/unbacks-australias-asia-aids-fight-20090502aqvm.html (3 May 2009).

In an article for the July issue of Cancer Forum (Vol. 33, issue 2), Dr Monica Robotin from Cancer Council NSW reports incidence rates in NSW are rising “faster than any other cancer”.

The July issue of Cancer Forum takes an indepth look at liver cancer, covering risk factors, incidence/mortality trends and issues around screening and treatment uptake.

Addressing the contentious issue of screening, Associate Professor Edward Gane, from the New Zealand Liver Transplant Unit, argues that delayed diagnosis has led to an “abysmal prognosis” for liver cancer rates in the region, with annual mortality currently exceeding incidence.

Most people presented with advanced disease, with five-year survival at less than 20%, yet earlier diagnosis could lead to significantly better outcomes. “The natural history of small hepatocellular carcinomas (1-3 cm) is vastly different, with five-year survival exceeding 50%,” Professor Gane wrote.

Despite the bleak prognosis, guest editors Professor Jacob George and Dr Robotin highlight the availability of effective therapies to either eradicate or suppress viral hepatitis that will translate to a reduced incidence of liver cancer, as well as the anticipated arrival of new, more effective targeted therapies, with fewer sideeffects and less anti-viral resistance. “We are clearly at the threshold of a better and brighter future for this previously untreatable malignancy,” they wrote.

• Abridged from www.virtualmedicalcentre. com/news.asp?artid=13830&title=Bigincrease-forecast-in-liver-cancer:-Maleincidence-to-rise-43-percent-in-10years&odr=&page= (1 July 2009).

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news Proposed change of Council name It is proposed that the name of the Hepatitis C Council of NSW be changed to Hepatitis NSW. This is a major change that we will propose to our membership at our annual general meeting on Thursday 12 November 2009 (see page 45).

Our Board of Governance recommends unanimously that the name change occur in order to recognise the changing environment around the two main forms of chronic viral hepatitis: hepatitis C and hepatitis B. While the Hepatitis C Council of NSW has always provided information, support, referral and advocacy around hepatitis B, the overwhelming focus of our work has been in hepatitis C. This focus on hep C will not change. Our current funding from NSW Health, membership fees, donations and from other sources remains unchangeably committed for our work in hepatitis C. However, a name change to Hepatitis NSW will potentially put us in a position to take advantage of new opportunities which may be forthcoming in the hepatitis B arena.

Additionally, a name change would make our organisation a friendlier place for people with hepatitis B to contact. Any future dedicated hepatitis B projects would be carefully planned and considered in light of competing priorities in the hepatitis C area.

We can assure our members and our other communities of interest that our focus on hepatitis C will not diminish. We have a very long way to go before there is adequate access to care, treatment and support for people with hepatitis C and before new hepatitis C transmissions are prevented.

Our members will shortly receive a letter explaining this proposed change in more detail, along with the formal notice of our annual general meeting in November. We encourage our current financial members to either attend our AGM in person or send in their proxy vote to record their view on this special resolution. • Dr Grenville Rose, president, HCCNSW.

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New national strategies for hepatitis Australia – Federal Minister for Health and Ageing, Nicola Roxon, has requested that five national strategies for blood borne viruses and sexually transmissible infections be developed. These include a third National Hepatitis C Strategy, a new National Aboriginal and Torres Strait Islander Sexual Health and Blood Borne Virus Strategy, and in a very welcome move, the first National Hepatitis B Strategy.

The process is being overseen by the Ministerial Advisory Committee on Blood Borne Viruses and Sexually Transmissible Infections (MACBBVS) and the writing will be coordinated by ASHM, the Australasian Society for HIV Medicine.

Stakeholders have been invited to provide initial feedback by 7 September and the MACBBVS will hold a public consultation day in Brisbane on 12 September. A final draft of the strategies will be released later in September, providing a further consultation opportunity.

The Hepatitis C Council of NSW is working with our national peak organisation, Hepatitis Australia, to provide input into these three strategies. Information about these welcome national developments can be found at www. ashm.org.au/nationalstrategies • Stuart Loveday, HCCNSW

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Staff postings at Council

Q&A:

Australia – The Hep C Council NSW has recently seen two staff leave. Emma Ward was Coordinator of the Client Services team. Leon Fernandez was our project officer working with the HepLink healthcare worker network and annual awareness week activities. Both will be sorely missed and we wish them well.

Niki Parry has been promoted to Coordinator of Client Services; Sarah George replaces Leon as Project Officer: Education and Development; and Toby Armstrong takes up the Project Officer: Client Services position. We wish them congratulations and a warm welcome to the team.

• HCCNSW

Liver fibrosis is the accumulation of tough, fibrous scar tissue in the liver. Formation of scar tissue is a normal body response to injury, but in fibrosis this healing process goes wrong.

The injury of liver cells stimulates inflammatory immune cells to release cytokines and other signalling chemicals. These chemical messengers direct special cells in the liver called hepatic stellate cells to activate and produce building substances (including collagen and fibronectin). These connective tissue substances (scar tissue) are deposited in the liver.

Connective tissue is normally broken down by the body but for some people, the process of breaking down or degrading connective tissue is impaired.

Bookmark design winner

Fibrosis occurs when excessive scar tissue builds up faster than it can be broken down and removed from the liver.

Many thanks to Kha Hien, who forwarded suggestions that led to our newly designed ‘holding hands’ bookmark. See page 48.

These bookmarks target the general public and go ‘back to basics’. They are distributed via local libraries, schools and TAFE or University campuses.

• Ed

What is liver fibrosis and what causes it?

Abridged from www.hcvadvocate.org/hepatitis/ factsheets_pdf/Fibrosis_09.pdf Altwed.

Q&A is a new feature. Please write, email, text or phone in with your question; see our contact details on page 3. Ed.

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Black dogs and hep C Writing for The Hep C Review, Adrian Rigg reports on the mental side effects of hep C treatment, providing tips on how they can be minimised.

One thing everyone will agree on is that most people experience some depression while on treatment. Because this is known, it can usually be controlled or avoided. The key thing is preparation.

Have someone looking out for you Partners or close friends should be involved in the decision to start treatment, as they play an important support role. Partners are encouraged to attend pre-treatment appointments, so they can be given the same information. As there is a lot to take in, they can also help with remembering what’s been said.

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Dealing with stress The best way to avoid stress is to remove as much of it as possible from life. A year with few major changes planned is a good year in which to commit to treatment. For many people a busy, stressful life is normal, so the focus should be on ways to cope with this. You don’t need to remove all stress from your life, but have methods of dealing with it within your own framework.

Find the opportunities for flexibility in your commitments and take advantage of these; for example, restructure your days so that important tasks are done at the times you feel better, and plan so you can sleep when you feel tired.

While on hep C treatment you need to take care of both your physical and mental health. The physical effects of treatment can make it difficult to do the things you enjoy, but it’s important to keep some elements of these. For example, if you enjoy running, walking will help; instead of a vigorous workout at the gym you could try some gentle yoga. Allow some time each day to concentrate on yourself, through meditation or quiet reflection. It sounds obvious, but you should also have some immediate outlets for when things get too much, such as walking away or taking a minute to breathe deeply; anything that will help in keeping calm.

Image by dave_apple, via www.flickr.com

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casual internet search on side effects of hep C treatment produces a bewildering amount of information, much of it quite frightening. After taking in some of this information, most people will want to speak with a health professional, who can give a clearer picture and answer some questions. Everyone’s experience of treatment is different; your health professional will know something about your situation and be able to give you advice in context. It is also helpful to speak with others who are on treatment, or have completed it.

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Image by pepe50, via www.flickr.com

treatment

Mood swings Mood swings and behavioural changes are some of the side effects that people are most afraid of. While on treatment, mood swings can happen suddenly, and sometimes ordinary things can set off a reaction. Sean (not his real name) experienced this after deciding to start treatment.

“For three years my GP had been telling me to go on treatment but I said I didn’t want to go through it – that it didn’t seem worth it. He kept at it until I finally agreed,” Sean said.

Knowing that his GP would be a good support helped a lot in the decision. He saw his GP once a week throughout the 12 months of treatment, to receive the weekly injection of interferon as well as to talk about any concerns. Sean had more serious side effects than many. It started with irrational bursts of anger and wanting to throw things across the room.

“At 12 weeks I was doing well – the virus was undetectable. About four months into treatment I began having more and more strange thoughts – wanting to scream and yell. I had a compulsion to yell at people,” said Sean.

Although he tried to tell himself that it was just the treatment, it could sometimes be difficult to separate these thoughts from his own.

He remembers beginning to feel angry at cars driving too fast through residential areas, a normal enough annoyance. However, the effects of treatment took this a step further.

“Apparently I started yelling at cars – abusing them with really foul language. I don’t remember this – my partner told me about it afterwards.”

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Image by maureen_sill, via www.flickr.com

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Medication to control side effects

Coping at work

He was referred to a psychiatrist and diagnosed with a mood disorder caused by interferon. He was prescribed an anti-psychotic drug, which stopped the disturbing thoughts and erratic behaviour. This was a frightening episode for Sean, but thanks to good support from his partner and GP he was able to deal with it and continue with treatment.

Work is often the main cause of stress in life, so having some flexibility in working times will help.

Your employer may be willing to make some reasonable changes so that it’s easier for you to work while on treatment. If you choose to disclose to your employer, you should do so before starting treatment so that any changes can be in place.

Think carefully though before disclosing your hep C status to your employer, as this may have unintended consequences.

Sean had been told about the possibility of sudden mood changes, but had not expected such severe occurrences as he had no history of this.

People who have previously experienced depression or mood disorders are more likely to do so while on treatment. However, they are no longer excluded from hep C treatment; in fact, they may be in a better position because they probably have life experience and will be able to draw on previously developed skills, strategies and strengths, and their health professional will already be on top of this. Anti-depressants and other medication can be prescribed from the start to avoid or reduce these side effects. Some people won’t want to add another medication to their treatment, but knowing it’s available if needed can help a lot.

Someone to talk to Sean continued seeing a psychiatrist once a month. Taking interferon can make it difficult to concentrate, so it’s good to have someone to talk to about treatment. Being given information to read about side effects and coping strategies is not as helpful as having a person to answer your questions. Some people find support groups useful, so they can share their experiences. Others prefer more private support resources, such as the Hep C Helpline. The main thing is to find a situation where you feel comfortable getting the support you want. Sometimes just knowing there is a person you can talk to is enough.

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You may find that your confidence is lower while on treatment, so it can be harder to assert your rights.

It’s also good to be a member of your relevant union, for some extra support in your workplace.

Coping at work while on treatment can be difficult but the confines of a professional environment can help to order thoughts and maintain focus. It was on leaving work at the end of each day that Sean found himself feeling less in control. The freedom of stepping outside the door made him feel exuberant and his thoughts wilder. It helps to have the support of friends and family – people who understand what you are going through and will notice signs of behavioural changes. Sean finished treatment and cleared hep C, and he knows he couldn’t have done it without the support of his partner, close friends and a good GP. While on treatment you need to know that interferon can affect the mind as well as the body, and that there are ways of coping with this. Knowing about side effects can help avoid some and deal with others as they arise. Having good support, and knowing how to get more help if you need it, gives you the best chance of completing treatment.

• For more information and tips on dealing with hep C treatment, phone the Hep C Helpline on 9332 1599 (Sydney) or 1800 803 990 (NSW).

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Kicking back with Marianne Faithfull, singer, songwriter and actress UK hep C ambassador, Marianne Faithfull provides an update on her day-to-day life.

Are you healthy?

Are you happy?

I am completely healthy, which comes as a surprise considering my lifestyle over the years.

I really felt it was wise to look after my hep C. Because it doesn’t go well with alcohol, I gave up [drinking] about three years ago.

Yes. I like an easy life. I like having plans and exciting things to do. I’m going on tour soon and I’m very excited about that. I think I’m in a phase of particular happiness in my life.

Yes, terribly. I do that trick of only eating half of what is on my plate, and I don’t drink any more so it’s got a lot better.

What’s your attitude to smoking?

I really am fed up with it. I’m not even enjoying it any more. My doctor has made an appointment for me to see a hypnotist, and I know when I go, I will stop smoking.

What’s your attitude to drugs?

I don’t do drugs at all any more and as a result I’m much more focused on my work. I think you can do things creatively in spite of drugs, but it’s much better without. I’ve overcome drug dependence and alcoholism over the years.

Drugs damaged me a lot. I think I was a bit backward by the time I gave up.

Is sex important to you?

It is quite. I don’t really have much sex and though I’m feeling very well without it, it would be nice.

Have you ever had therapy?

Yes. I needed it. I started work and left my mother so young. I had a problem with love and affection and safety. I had to really learn to find that in myself, to look after myself.

How do you feel about cosmetic surgery?

I’m thinking about it. I’d love to have the area around my neck and my chin just lifted a bit, but the problem is I don’t like pain. I think I probably will do it eventually.

• By Julia Molony. Abridged from www. guardian.co.uk/lifeandstyle/2009/mar/22/ marianne-faithfull-my-body-and-soul (22 March 2009)

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Marianne, with mates Sandra Bernhard and Joni Mitchell. Image by Albert Domasin, via www.flickr.com

Do you worry about your weight?

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A guide to medical trials: Most people know little about clinical trials but getting involved in them carries chances and risks.

Writing for The Hep C Review, Kirstie D’Souza explores the world of clinical medical trials.

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he makers of the proposed swine flu vaccine in Australia say they’ve every confidence that it’ll do the job. But the public can’t get hold of it yet – even though the demand is urgent. That’s because the vaccine – like any new medical drug in Australia – has to be thoroughly tested on a large group of people and its effects studied before it can be made generally available. As Dr Margaret Chan of the World Health Organisation says, “Having a vaccine available is not the same as having a vaccine that’s proven safe.”

All new drugs and treatments in Australia have to go through this process of clinical trials on humans, and every clinical trial relies on volunteers, despite the unknowns.

So what makes people prepared to volunteer and how do you go about deciding to take part?

For volunteers in the swine flu trials, the chance to be amongst the first to be protected by the vaccine may be motivation enough. Or they may view taking part as a way of helping the rest of the community. Most would probably see their participation as relatively low risk and undemanding.

But when a clinical trial is investigating new treatments for hep C – such as the triple therapy trials taking place at the moment – potential participants may have more complex decisions to make before they sign up. Nonetheless the process of finding out about any clinical trial and making a decision to take part is much the same.

Informed Consent Organisers of a clinical trial must get the “informed consent” of participants before they can join the trial. This means they must make sure that you, as a potential volunteer, know and understand the purpose of the trial and what’s involved in taking part.

Image by natebeaty, via www.flickr.com

There are two main ways of doing this. One is by issuing a document which you will be asked to sign and includes a summary of the trial, your rights and responsibilities as a participant, an outline of the proposed schedule for treatment and an explanation of the potential benefits of taking part as well as the potential risks and possible side effects. If you decide to go ahead, make sure you keep a copy of this to refer to throughout the trial process. The paperwork will make clear what phase of the clinical trial you’ll be taking part in. This will give you some idea of how much is already known about the treatment.

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what’s in it for you?

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The different types of clinical trials Before any trials are started on humans, the drug or treatment regime will have been thoroughly tested in a research laboratory on cell cultures (in test tubes) and then on animals, and only then are human trials done.

Phase one: small group of people (perhaps 10 to 30) is given the drug for a short to longer period of time to see how the human body reacts to it and to determine correct dosage.

Depending on the treatment, these may be healthy volunteers or people with an existing condition.

Phase two: larger group of people (perhaps 100 to 300). This phase evaluates effectiveness and continues to gather information about safety and side effects.

Phase three: may have hundreds or possibly thousands of people. This phase compares the effectiveness of the new treatment to existing treaments currently available.

Phase four: happens after a drug or treatment has been made generally available. It studies use of the drug over time and how it reacts with other drugs. This phase may have many thousands of participants.

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Informed Consent is not a contract

Weighing up the pros and cons

The second way to get informed consent is through some sort of meeting or interview where you as a potential participant can talk to medical staff and ask questions about what’s involved.

Once you agree to take part, you’ll be asked to sign that you’ve understood and that you consent to joining the trial. But that’s not the end of the process – “informed consent” should be ongoing and interactive. The organisers have a duty to update you about progress in the trial and to inform you if anything comes to light which might affect your consent. For example, if others taking part have an unexpected adverse reaction to the treatment, you must be told. Similarly, you can ask questions at any time during the trial or after it. You can also withdraw at any time if you change your mind about taking part. Signing a consent document is not a contract.

With a hep C treatment trial, your decision might be coloured by previous experience of treatment regimes. On the plus side, in a clinical trial you’ll get top quality healthcare which will provide excellent monitoring of your condition. You may find that the new treatment is extremely effective and your early access to it may be vital in avoiding or minimizing liver damage. Taking part in a trial can make you feel more positive because you’re doing something about your health.

Many people also get a sense of making a valuable contribution to others with hep C.

Participants must consent freely to take part in trials. There should be no threat of withdrawal of treatment or of reduced healthcare of any sort for people who decide against taking part.

When you meet with medical staff representing the trial: • Take a friend or family member with you if possible.

• Write down questions that you want answered.

• Write down the answers - or get whoever has accompanied you to do so.

• Ask to record the consultation if that’s a better option for you.

• Find out who you can speak to if you have further questions or concerns.

• Check what needs to happen before you can be accepted as a participant (e.g. blood tests).

• Check what will happen if you are assigned a placebo – a harmless alternative which will be compared to the new treatment – or an existing treatment. Will you get access to the new treatment at a later stage?

• Check whether going on the trial will prevent you from getting access to future treatments.

• If appropriate, ask if you can talk to others taking part.

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On the other hand, it’s important to remember that a trial hasn’t been designed to benefit you personally so there’s no guarantee that it will.

Taking part in a trial may mean you don’t get subsidised access to new treatments when they becomes available under Medicare.

It may also be that the new treatment has unexpected risks or side effects and your life and health are more negatively affected during the trial than you anticipated. Alternatively, the new treatment may turn out to be less effective than existing treatment or, if it is effective, it might not work well for you.

In some extreme cases, there have been serious consequences in drug trials. In 2006, six volunteers in the UK taking part in the safety trial of a new drug ended up in intensive care because of an unforseen reaction.

Financial payments “Trial participants provide a valuable service to society. They take time out of their daily lives and sometimes incur expenses associated with their participation,” say Medicines Australia in their report Principles on Conduct of Clinical Trials.

“When payments are made to trial participants, payments should be based on the trial participants’ time and/or reimbursement for reasonable expenses incurred during their participation such as parking, travel and lodging expenses. The nature and amount of compensation or any other benefit should also be consistent with the principle of voluntary informed consent,” Medicines Australia suggest.

Image by rumorebianco, via www.flickr.com

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feature • Will you have to take time off work?

• Does the trial involve invasive procedures such as a biopsy?

• How will your family cope if you’re ill or react badly to treatment?

Think about how open you’re prepared to be about what you’re doing. It’s hard to get support if people around you don’t realise you might need it. If you wouldn’t be comfortable telling your employer or colleagues about your participation, how will that affect your life at work?

Don’t ignore possible obstacles. Psychologists talk about a phenomenon called “unrealistic optimism” which is the very human trait of believing that in health terms we will be the lucky ones and all the bad outcomes will happen to other people. But with careful preparation and support from medical staff involved in a trial it’s possible to take part with both optimism AND realistic expectations.

Realistic optimism It pays to think carefully about how taking part might affect your daily life and the lives of those closest to you. Look at what’s involved - timeframe, number of clinic visits, potential side effects – and consider how you would cope with the practicalities.

• How demanding is the regime?

• Will you have far to travel to appointments?

Clinical trials are the most reliable way of testing a drug or treatment and without them – and the people who step up to take part in them – we wouldn’t have the same access to life-saving or life-enhancing treatments.

For more information about current trials, speak to your doctor or contact the Hep C Helpline.

• Kirstie D’Souza is a freelance health writer (kirstieds@hotmail.com).

St Vincent’s Hospital Viral Hepatitis Clinic Protease inhibitor trials for patients with HCV genotype 1 and previous PEG-IFN and ribavirin treatment

The St Vincent’s Hospital Viral Hepatitis Clinic in Darlinghurst is recruiting patients for several trials with new therapeutic agents, including combination therapy with pegylated interferon, ribavirin and newly developed protease inhibitors.

Two trials will be enrolling over the next six months for patients with previous hep C treatment. Broad inclusion criteria are: Image via www.images.google.com

• HCV genotype 1 • Prior non-response or relapse to PEG-IFN and ribavirin therapy • No active injecting drug use or heavy alcohol use For further information, please contact Rebecca Hickey (ph 8382 3825 or rhickey@stvincents.com.au) or Fiona Peet (ph 8382 2925 or fpeet@stvicnents.com.au)

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Social determinants of he This article by Richard Wilkinson and Michael Marmot introduces Social determinants of health: the solid facts, a discussion paper from the World Health Organization.

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ven in affluent countries people who are less well off have shorter life expectancies and more illnesses than those who are better off. Not only are these differences in health an important social injustice, they also draw attention to some of the most powerful determinants of health standards in modern societies. In particular, they have led to a growing understanding of the sensitivity of health to the social environment and to what have become known as the “social determinants of health”.

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Social Determinants of Health: The Solid Facts is a booklet that outlines the most important parts of this new knowledge. The ten topics covered are: 1. the social gradient 2. stress 3. early childhood

Health policy was once thought to be about little more than the provision and funding of medical care; the social determinants of health were discussed only among academics.

social exclusion working conditions unemployment social support drug dependence food transport

Each chapter contains a brief summary followed by a list of implications for public policy.

As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we also need to feel valued

Social support Friendship, good social relations and strong supportive networks improve health at home, at work and in the community.

What is known Social support and good social relations make an important contribution to health. Social support helps give people the emotional and practical resources they need. Belonging to a social network of communication and mutual obligation makes people feel cared for, loved, esteemed and valued. This has a powerful protective effect on health. Supportive relationships may also encourage healthier behaviour patterns.

Support operates on the levels both of the individual and of society. Social isolation and exclusion are associated with increased rates of premature death and poorer chances of survival after a heart attack. People who get 24

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less social and emotional support from others are more likely to experience less wellbeing, more depression, a greater risk of pregnancy complications and higher levels of disability from chronic diseases. In addition, bad close relationships can lead to poor mental and physical health.

The amount of emotional and practical social support people get varies by social and economic status. Poverty can contribute to social exclusion and isolation.

Social cohesion – defined as the quality of social relationships and the existence of trust, mutual obligations and respect in communities or in the wider society – helps to protect people and their health. Inequality is corrosive of good social relations. Societies with high levels of income inequality tend to have less social cohesion and more violent crime. High levels of mutual support will protect health while the breakdown of social relations, sometimes following greater inequality, reduces trust and increases levels of

ealth: social support

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By tackling some of the material and social injustices, social policy will not only improve health and wellbeing, but may also reduce a range of other social problems that are associated with ill health and are rooted in some of the same socioeconomic processes.

• In ED61, we began our coverage of Social Determinants of Health. Over the following editions of The Hep C Review, we are featuring the remaining topics (far left) that underpin this social viewpoint. Ed.

Image by sillydog, via www.flickr.com

and appreciated. We need more social interaction within society. We need friends and the feeling of being useful. And we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.

violence. A study of a community with initially high levels of social cohesion showed low rates of coronary heart disease. When social cohesion declined, heart disease rates rose.

widely, will help people feel valued and supported in more areas of their lives and will contribute to their health, especially their mental health.

• Designing facilities to encourage meeting and social interaction in communities could improve mental health.

Policy implications Experiments suggest that good social relations can reduce the physiological response to stress.

Intervention studies have shown that providing social support can improve people’s recovery rates from several different conditions. It can also improve pregnancy outcome in vulnerable groups of women.

• Reducing social and economic inequalities and reducing social exclusion can lead to greater social cohesiveness and better standards of health.

• In all areas of both personal and institutional life, practices that cast some as socially inferior or less valuable should be avoided because they are socially divisive.

In the next edition of The Hep C Review we will cover drug dependence.

• Abridged from Social determinants of health: The solid facts (second edition), World Health Organization, 2003. The full booklet can be downloaded from http://www.euro.who.int/ document/e81384.pdf

• Improving the social environment in schools, in the workplace and in the community more The Hep C Review

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Drugs take toll inside NSW prisons Injecting drug use has taken a toll on prisoner health in the form of hep C with one in three inmates testing positive, writes Joel Gibson for the Sydney Morning Herald.

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Image by superflurient, via www.flickr.com

he most comprehensive survey of prisoners in NSW’s history confirms some of the stereotypes about jails and their inmates and destroys others.

Inmates have shocking and sometimes lifelong problems with drugs and alcohol, family breakdown, mental illness and a lack of education – long considered the major reasons crime is committed.

But the research also suggests that prisons and prisoners are improving in some respects.

About half of the state’s inmates said they were expelled from school, were unemployed before being incarcerated, were risky drinkers, had injected drugs, and were intoxicated at the time of their offence.

More than half had suffered a serious head injury, while 75% smoked tobacco – although most of them said they wanted to quit – and 42% had used the drug ice.

HIV was not prevalent in prison, with only one out of 996 people surveyed being HIV-positive, despite five others wrongly believing that they had HIV. But intravenous drug use had taken a toll on prisoner health with one in three inmates having hep C. One in five had attempted suicide at some point, while one-third of men and 43% of women suffered depression and two-fifths of inmates had not had a visitor in the past month.

The picture painted of life in jail was particularly depressing, even if it appeared to be improving.

One in six inmates was aware of a sexual assault in jail in the past year, one in three had used drugs on the inside and half of inmates

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considered it “easy” to get them. But in each of those examples, the 2009 figures were an improvement on the previous survey in 2001.

Rhonda Booby, from the Department of Corrective Services, attributed the improvements to case management of each prisoner since the late-1990s and better organised rehabilitation programs.

Visitor screening and the use of sniffer dogs had also reduced the amount of drugs getting into jails, she said, but widespread drug dependence made further gains difficult.

NSW Justice Health, which conducted the NSW Inmate Health Survey in 1996, 2001 and last year, says it is one of the most comprehensive assessments of its type in the world.

The average NSW prisoner is aged 35, Englishspeaking and male. Aboriginal people were significantly over-represented. Of the 19% of inmates born overseas, most are from New Zealand, followed by Britain, then Lebanon, Vietnam and Fiji.

• By Joel Gibson. Abridged from www.smh. com.au/national/risky-sex-and-drugs-take-tollinside-prisons-20090713-ditw.html (14 July 2009).

Sticking point: US needle programs

feature

US Congress could end the ban on federal funding of needle exchange programs but still kill needle exchange, according to The Washington Post.

A

fter securing the right from Congress last year to use its own money to fund needle exchange programs, the District of Columbia stands to lose it. Confusingly, the threat is wrapped up in legislation that ostensibly would lift a 21-year-old ban on using federal money to fund syringe-swapping groups. We say “ostensibly” because the restrictions on where those organisations could operate are so broad that they would effectively shut down the city’s only program.

An 80% reduction in the incidence of HIV among people who inject drugs over the past 20 years can be attributed in part to needle exchange programs funded by localities and private organisations, according to a 2008 report from the CDC. Those still resistant to the facts should look at communities and urban areas grappling with the HIV/AIDS epidemic to understand the importance of making all possible funds available to effectively fight the epidemic.

Image via www.images.google.com

The US House of Representatives voted to end a 21-year-old ban and allow federal funding of needle exchange programs.

It also voted to allow the District of Columbia to use its own money for such a program. There’s one catch – the programs cannot be located “within 1,000 feet of a public or private day care center, elementary school, vocational school, secondary school, college, junior college, or university, or any public swimming pool, park, playground, video arcade, or youth center, or an event sponsored by any such entity.”

This would render whole sections of cities off-limits. And it would effectively kill the District’s one needle exchange program.

None of this is a done deal. The Senate version of the bill doesn’t have those onerous restrictions. When the House and Senate meet in conference committee to hash out the final legislation, this restrictive language must be removed.

Since the 1990s, studies have shown that needle exchange programs work. They are effective in reducing the spread of HIV and other bloodborne viruses while not increasing drug use. Just ask the learned people at the Centers for Disease Control, the National Institutes of Health, the American Medical Association and the World Health Organization.

They need only look out of their Washington window. An astounding 3% of District residents are living with HIV/AIDS and injecting drug use is the third-most-common mode of transmission.

“People have been playing politics with people’s health for years,” D.C. Councilmember David Catania told The Post. “It’s time for them to stop.”

• Abridged from http://www.washingtonpost. com/wp-dyn/content/article/2009/08/11/ AR2009081102937.html (12 Aug 2009).

Also see articles in Edition 65, page 7; and Edition 64, page 32. Ed.

The Hep C Review

Edition 66

September 2009

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opinion

Harm reduction and law makers Lawmakers think that supporting radical moves will get them in trouble. Bruce Mirken’s article shows how harm reduction is not the ogre it’s often painted out to be.

F

or a long time we have been puzzled why overwhelming public support for legal access to harm reduction initiatives like medical marijuana has not translated into legislative action.

A Zogby poll released March 29 (2004), may have solved the mystery.

Every time medical marijuana has been on a ballot it has passed overwhelmingly – most recently by 83% to 17% in Burlington, Vermont. Polls consistently show support ranging from 60% up to 80% or higher. This support comes from all segments of the electorate: young, old, liberal, conservative, rich, poor, Republican, Democrat or independent.

Yet politicians remain, for the most part, scared to death of the issue. Efforts to pass medical marijuana bills through state legislatures have been surprisingly tough going. Successful efforts, such as a bill passed and signed into law in Maryland, have sometimes required painful compromises that limit the protection given to patients.

On a national level, even liberal members of Congress representing states where voters have passed medical marijuana laws have been afraid to openly oppose federal policies that criminalise patients who use medical marijuana.

Vermont: Think majority supports 37.6% Rhode Island: Think majority supports 26.5% Voters support medical marijuana by a whopping margin, yet they think they’re in the minority.

Nothing in the polling explains the reasons for this, but it is reasonable to assume that the saturation prevalence of “drugs are bad/marijuana is dangerous” propaganda in the media (often parroted uncritically by mainstream news outlets) is a major reason. Support for protecting medical marijuana patients from arrest is a thoroughly mainstream position, but you wouldn’t know it from most media coverage of the issue.

It’s a safe bet that legislators and their campaign staffs are under the same misapprehension as voters.

They think that supporting medical marijuana is a radical move that will get them in trouble with their constituents. It’s not, and it won’t.

But our elected representatives won’t know that unless we teach them.

• Bruce Mirken is communications director for the Marijuana Policy Project, based in the USA. Abridged from www.alternet.org/story/18305/ the_trouble_with_marijuana_and_legislators/

Asked if they support legal access to medical marijuana for seriously ill patients, the results from voters in both states were consistent with previous polling: 71% yes to 21% no in Vermont, and 69% yes to 26% no in Rhode Island.

But the new poll added a question that has not often been asked: “Regardless of your own opinion, do you think the majority of people in [Vermont or Rhode Island] support making marijuana medically available, or do you think the majority opposes making marijuana medically available?” Here the results were very different:

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Image via www.images.google.com

Why are they so afraid? Politicians usually jump on issues that have better than two-to-one public support. The new Zogby poll results may contain the answer.

opinion

Drug decriminalisation in Portugal: lessons for creating fair and successful drug policies Writing for the Cato Institute, Glenn Greenwald examined Portugal’s near-decade of drug liberalisation. Here we provide the executive summary from his 38-page white paper.

O

n July 1, 2001, a nationwide law in Portugal took effect that decriminalised all drugs, including cocaine and heroin. Drug possession for personal use and drug usage itself are still legally prohibited, but violations of those prohibitions are deemed to be exclusively administrative violations and are removed completely from the criminal realm. Drug trafficking continues to be prosecuted as a criminal offence.

Other states in the European Union have developed various forms of de facto decriminalisation – whereby substances perceived to be less serious such as cannabis rarely lead to criminal prosecution – but Portugal remains the only EU member state with a law explicitly declaring drugs to be “decriminalised.” Because more than seven years have now elapsed since the enactment of Portugal’s decriminalisation system, there is ample data enabling its effects to be assessed.

Notably, decriminalisation has become increasingly popular in Portugal since 2001.

Except for some far-right politicians, very few domestic political factions are agitating for a repeal of the 2001 law. And while there is a widespread perception that bureaucratic changes need to be made to Portugal’s decriminalisation framework to make it more efficient and effective, there is no real debate about whether drugs should once again be criminalised. More significantly, none of the nightmare scenarios touted by preenactment decriminalisation opponents – from rampant increases in drug usage among the young to the transformation of Lisbon into a haven for “drug tourists” – has occurred.

The political consensus in favour of decriminalisation is unsurprising in light of the relevant empirical data. Data indicates that decriminalisation has had no adverse effect on drug usage rates in Portugal, which, in numerous categories, are now among the lowest

in the EU, particularly when compared with states with stringent criminalisation regimes.

Although post-decriminalisation usage rates have remained roughly the same or even decreased slightly when compared with other EU states, drug-related pathologies – such as sexually transmitted diseases and deaths due to drug usage – have decreased dramatically. Drug policy experts attribute those positive trends to the enhanced ability of the Portuguese government to offer treatment programs to its citizens – enhancements made possible, for numerous reasons, by decriminalisation.

This paper begins with an examination of the Portuguese decriminalisation framework as set forth in law and in terms of how it functions in practice. Also examined is the political climate in Portugal both pre- and post-decriminalisation with regard to drug policy, and the impetus that led that nation to adopt decriminalisation.

The paper then assesses Portuguese drug policy in the context of the EU’s approach to drugs. The varying legal frameworks, as well as the overall trend toward liberalisation, are examined to enable a meaningful comparative assessment between Portuguese data and data from other EU states.

The paper also sets forth the data concerning drug-related trends in Portugal both preand post-decriminalisation. The effects of decriminalisation in Portugal are examined both in absolute terms and in comparisons with other states that continue to criminalise drugs, particularly within the EU. The data showed that, judged by virtually every metric, the Portuguese decriminalisation framework has been a resounding success. Within this success lie self-evident lessons that should guide drug policy debates around the world.

• Glenn Greenwald is a constitutional lawyer and a contributing writer at www.salon.com Abridged from www.cato.org/pub_display. php?pub_id=10080

The Hep C Review

Edition 66

September 2009

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Safer Injecting Procedures

30

Blood circulation

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Arteries which carry oxygenated blood, at high pressure, from the heart and lungs to the tissues of

ALL blood is red - veins and arteries. Larger

If you are going to inject drugs it is important to understand how blood flows around your body.

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Lust 4 Life

These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs.

Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.

www.hepc.org.au

Edition 66

September 2009

You must only inject into veins. The next few posters look in detail at veins and arteries...

Capillaries which transfer oxygen and waste products between cells and blood in the body tissues and lungs.

Artery: taking blood to the tissues

Superficial Vein: returning blood to heart and lungs

arteries have a pulse - never inject into a blood vessel that has a pulse.

The Hep C Review harm reduction poster, September 2009 (#21). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne.

The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au

Lu 4 st Life

and, joining them together, millions of tiny blood vessels called

Veins which carry blood back to the heart and lungs at low pressure

the body

a ig to n hh i c t u c s inje nder o t u us is ero lood : g n b n a sd the t ca It i ause that i a rm ll bec sure o a f s w ’t ry pre can rte t i a t a the g tha t are i t l s din n a e f Sp a e o bl so ly t ed the p e p l p B su sto od to o l t b clo the f f o cut

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opinion

Effective care, not criminal

Writing in The Australian, John Ryan discusses Australia’s approach to harm reduction and its consequ

T

he pro-drug war policy wonks are in retreat.

The United Nation’s World Drug Report makes this clear.

Released last month in Washington by the head of the UN Office on Drugs and Crime (UNODC) and new US government drug tsar Gil Kerlikowske, the report has direct implications for Australia.

The report reveals that a significant shift is occurring in the way the world controls drugs.

The ambition of ending drug use through law enforcement is giving way to a sobering realisation that we need to reduce demand for drugs, decrease incarceration of drug users and increase drug treatment programs.

The report warns against using law enforcement as a blunt instrument and calls for universal access to drug treatment to save lives and reduce demand.

Kerlikowske, newly appointed head of the White House Office of National Drug Control Policy, has recently said we should completely and forever end the war on drugs analogy. Based on 100-yearold policy architecture, it has failed to eradicate the illicit drug trade, conservatively estimated to be worth more than $320 billion a year.

As a result, we are confronted with regional and national HIV epidemics driven by illicit injecting drug use. The UNODC report records injecting drug use in 148 countries, covering 95% of the world’s population.

Just as we live in a global economy, so we live in a global illicit economy. While Australia doesn’t have the crack cocaine problems found in the US or Britain, it does have different drug problems, particularly with opiates and amphetamines.

During the Howard years, we had a clever government approach to drugs. Officially called “Tough on Drugs”, drug war rhetoric was matched with investment in treatment programs.

The government sensibly invested resources in the diversion of drug users away from the criminal justice system and into the drug treatment system.

The public drug war rhetoric was matched with the quiet national funding of evidence-based and sensible interventions, such as opioid substitution treatments and needle and syringe programs.

Howard government spending was built on a solid policy foundation. Since 1985 Australia has relied on a strategy with three key elements to address illicit drugs: demand reduction, supply reduction and interventions to reduce the harm when drug use does occur, commonly known as harm reduction.

A Howard government-funded study showed that a decade of harm reduction programs significantly reduced the need for health services, saving $7.7 billion. Here lies the reason the Howard government’s investment in harm reduction, based on needle and syringe programs, existed under the banner of Tough on Drugs.

Montage of images via www.images.google.com

While a drug strategy based on supply, demand and harm reduction sounds balanced, the devil is in the detail. Nearly 50% of all drug strategy

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promotion

lisation

uences.

funding is still spent on law enforcement and only 3% on harm reduction. Most of the demand and harm reduction budget for drugs is dispersed through the Council of Australian Governments’ new National Health Care Agreement. The quantum of money to health generally has increased to record high levels under the Rudd government, to be dispersed by the states and territories under broad agreements with the federal government.

The problem with these new agreements is they do not have key performance indicators for demand and harm reduction programs or for communicable diseases such as HIV. They also do not insist that specific funds be attributed to programs that meet nationally agreed targets for our illicit drugs strategy.

The risk to our drug control efforts is therefore twofold: John Howard didn’t have the spending balance right between supply, demand and harm reduction; and specific accountabilities are not enshrined in the new healthcare agreements.

There is little political glory in funding drug dependence services and HIV prevention. Weak political constituencies in these areas make funding a constant vulnerability. This encourages state treasuries to take a reactive approach to spending, moving further away from funding the drugs area proactively and adequately, pending another HIV or drug crisis.

At the local level, police and drug treatment and social welfare programs will often work together to reduce harm associated with drug use.

However, the lack of key performance indicators in healthcare agreements, poor access to training and workforce development, and high levels of workforce attrition mean that cross disciplinary collaboration on a long-term basis is at risk.

• John Ryan is chief executive of Anex, Australia’s peak public health organisation for illicit drug-related harm reduction.

Nominations for Hepatitis Australia board

W

e are seeking nominations from people living with, or who have had, chronic viral hepatitis, who are financial members of one of the state or territory hepatitis organisations to join the Hepatitis Australia Board from November 2009 for a two year term. All board members are volunteers however, the costs associated with attendance at meetings are met by the organisation.

The role of the Board includes setting the strategic direction of the organisation; driving and monitoring organisational performance; selection and monitoring of the performance of the CEO; ensuring accurate financial reporting; establishing governance policies; ensuring compliance with legal obligations and controlling organisational risk. In addition, the community board members have a role in bringing a lived understanding of viral hepatitis to the work of the Board.

A board induction process is in place and the executive officer of your local hepatitis organisation would provide mentorship and assistance to fulfil your board responsibilities.

If you are interested in joining the the Hepatitis Australia Board, please contact Stuart Loveday, Executive Officer, the Hepatitis C Council of NSW to obtain copies of the nomination form and detailed role description.

Nominations on the approved form must be received by Hepatitis Australia on or before Friday 16 October 2009.

• For general information about Hepatitis Australia please visit www.hepatitisaustralia. com Images via www.images.google.com

Abridged from www.theaustralian.news.com. au/story/0,25197,25725464-23289,00.html (4 July 2009).

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September 2009

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my story

Juz’s story: from childhood s to adult self health manageme

After 10 days I woke up in the night on a Saturday morning and started vomiting. I started shaking so badly I couldn’t sit down and I spent the next 48 hours pacing the house. On

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Monday, I rang the specialist. He was away but his colleague instructed me to come off treatment immediately. I was left feeling confused and afraid. I felt that I’d failed somehow. My experience was put down to a reaction to interferon but I believe I had a severe panic attack brought on by a lack of support. After I stopped treatment, I was told that there was no cause for worry and that I would live with hep C for the rest of my life.

Around this time, I met my husband. It was a lovely period in my life. My health was good.

We went to the specialist to ask about having

Image by Sarahnaut, via www.flickr.com

I

went onto treatment for the first time in 2000.

It was three injections a week of interferon and daily ribavirin pills. I didn’t go through a clinic because I saw my specialist privately, but I was referred to a nurse at one of the hospitals for the initial injection. I remember crying because I was so afraid of putting drugs into my body with a needle. The nurse was very frustrated and terse with me and I was sent home with no support.

my story

self medication ent children. We were advised that the risk of transmission was low and that there was no reason not to have kids. I got pregnant and had a very easy pregnancy. My ALTs were very low during the pregnancy. I naively hoped that my hep C had cleared. My birth experience was wonderful.

The staff at the hospital knew I had hep C. My obstetrician was very reassuring and careful with the birth. The midwives encouraged me to breastfeed. I was optimistic about the future.

After my son was born, I had a severe flare up of the hep C. My ALTs went up to the 400s and 500s.

Nobody could tell me why it was happening.

I felt incredibly fatigued. I remember going to the supermarket and thinking that the pram was the only thing holding me up. My viral load rocketed up. My specialist started mentioning transmission risks to my son. Before your child is born the possibility of passing hep C is theoretical and statistical. Once they are born, and you are waiting out the testing window period, the prospect of transmission becomes horrific. Health issues with a child are bad enough, but a health issue that you’ve created from irresponsible, risktaking behaviour is almost beyond bearing.

I went and saw a paediatrician. He gave my son a PCR test. I still remember the overwhelming sense of relief when my husband called me to say that my son was negative. Things started to calm down and my flare-up settled down after 18 months.

Looking back, before Thomas’s birth I didn’t think about hep C much. I could sometimes go months without giving it much thought. After the birth and the subsequent flare-up, I now think about it every day. I hate it. I wish I could go back to just forgetting it was there. But I can’t.

I have told very few people about my hep C. Only my very close friends know anything about what I have been through. I have managed to develop a very rewarding career. One of my core values at work is professionalism. Bearing this in mind, to some degree I think that health is a

private issue. Even if I had a different health issue, I wouldn’t tell work colleagues, but it is even more so with hep C. There is little understanding around drug use and I think that people are naturally quite afraid of it. If my workplace knew of my hepatitis, I really believe it would affect my career negatively. I also don’t want to be judged by my behaviour of 26 years ago.

Do I fear discrimination? Absolutely. I think it is natural for people to judge and make assumptions about you. If work thought I had a serious illness that might affect my performance, I believe it would restrict my opportunities. I have a child to support and a mortgage. I’m trying to balance looking after my health in the present with ensuring that my career is protected so we don’t live below the poverty line in the future.

That’s my major concern at the moment.

Unlike some people with hep C, I get an amazing amount of support from my partner. He is an exceptional person. Without the hep C I think I would have married a completely different person; I chose someone who was so accepting.

There are pluses to everything.

Once the flare after my son’s birth had settled, I just wanted to get rid of hep C. I’d had a gutful of it but was nervous about trying treatment again.

[More about Juz’s treatment re-run in the next edition.]

•

Juz, VIC. Part one of Juz’s story can be found in Edition 65, The Hep C Review. The final installment, part 3 will be published in our next edition.

Abridged from www.hepatitisaustralia.com/ about_hepatitis/personalstories.html#Justine

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feature

World Hepatitis Allia

Some readers might be aware of the World Hepatitis Alliance and their involvement in the World Hepatit few of us are probably aware of the full range of activities that they are involved in. Helen Tyrrell provide

A

t a global level, there has been some amazing progress on hepatitis following the formation of the World Hepatitis Alliance (WHA) less than two years ago. Here, we provide a brief overview of WHA activities: • Lots of work to get a viral hepatitis resolution on the agenda for the 62nd World Health Assembly in May 2009. The swine flu epidemic has pushed it back to a January 2010 World Health Executive Meeting.

Image by sharedferret, via www.flickr.com Face stickers added through digital enhancement by Paul Harvey.

• Over 200 groups took part in World Hepatitis Day 2009 activities in over 61 countries – a 30% increase from 2008. For the first time, activities took place in Azerbaijan, Chile, Colombia, Cuba, Dominican Republic, Ghana, Greece, Israel, Kuwait, Mauritius, Nigeria, Puerto Rico, Taiwan, Turkey and the United Arab Emirates.

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• Sponsorship for 1,400 advertising billboards in 40 cities across Brazil, Switzerland, USA and UK was achieved.

• The “Am I Number 12?” World tour went to Argentina, Brazil, China, Hong Kong, Poland, Scotland and Taiwan. It is expected to come to Australia in the next 12 months.

• Over 2,000 World Hepatitis Day related media pieces reached an estimated audience of over 587 million people in May/June 2009.

• Official supporters of the Alliance now include the European Association for the Study of the Liver, the Global Alliance for Vaccines and Immunization, Médicins Sans Frontières, International Harm Reduction Association and the Pan American Health Organization.

• Support for World Hepatitis Day was received from Barack Obama, Bill Clinton and London Mayor Boris Johnson.

feature

ance activities

tis Day events but es an overview.

• Kuwait and Scotland signed up to the “12 Asks” of government policy campaign and ongoing dialogue is occurring with several other governments including Australia. The Australian Health Minister, Nicola Roxon recently indicated the “12 Asks” will be reviewed in the context of the 3rd National Hepatitis C Strategy and 1st National Hepatitis B Strategy.

• Global sponsors are supporting the World Hepatitis Alliance to fast track an international audit of hepatitis policy for the next edition of the global Hepatitis Atlas.

The Global Public Relations Company Fleishman-Hillard has been appointed again to co-ordinate the next phase of the campaign. Key elements of the campaign over the next two years will be: • The “Am I number 12?” logo will be retained as the WHA’s communication brand (similar to the red ribbon for HIV).

• The proposed theme for WHD 2010 and 2011 is “This is hepatitis……” This is a simple, flexible and easy to translate concept that will allow an emotional impact to be added to the campaign by providing a vehicle to tell personal stories of the real life impact of viral hepatitis around the globe. This narrative is expected to reinforce the scale of the problem, while also gaining international recognition, by encouraging and empowering people to speak out and engage with health policy makers.

• A global on-line campaign will encourage people to submit their stories for posting on the website and an e-petition will be commenced to support the policy objectives of the campaign.

• Subject to funding, a documentary is planned which will be used as part of the Global “Am I number 12?” Tour.

• Also subject to funding, an unsigned bands’ competition will be hosted and winners given the chance to play at a concert.

• Work on the Hepatitis Atlas Burden of Disease and Policy Analysis Report will continue, as well as the “12 Asks” campaign and, the role of the Public Health Panel will be further developed.

Full membership of the Alliance will be open to not-for-profit and non-governmental, legally constituted organisations which are community driven and have chronic viral hepatitis (B and C) as their primary area of activity.

Clinical associations and other community organisations which do not meet these criteria will be able to join as associate members.

Information on how organisations can join the Alliance will be distributed in coming months.

Next year nominations for Regional Board Members will be sought from full members and elections will be held in June 2010 for a two year term. The role of the Regional Board Member includes support and liaison with hepatitis groups within the region, engagement with the World Health Organization Regional Office, building capacity within the region, assisting with advocacy and acting as a spokesperson for the Alliance.

Capacity building at a regional level will be a key focus in 2009-2010, particularly in sub-Saharan Africa and SE Asia where there are relatively few groups representing the interests of people with hepatitis.

• Helen Tyrrell is CEO of Hepatitis Australia and WHA Board Member for Australasia.

For further information on the World Hepatitis Alliance refer to www.aminumber12.org To review the Australian version of the ‘12 Asks’ refer to www.hepatitisaustralia.com/ events_projects/WorldHepatitisDay20092.html

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September 2009

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feature

Streetshot photo exhibit b

A new youth initiative has helped raise awareness about hep C, one of Australia’s most common infecti

H

ep C affects more than 200,000 Australians but is often not discussed. There are fears most young people do not understand the disease, and public health experts are calling for a mass media campaign.

Young artists from at-risk backgrounds, and who have very little experience in photography, were given disposable cameras and asked to take pictures that express their understanding of hep C and risk. The rough and raw photos now line the walls of the Sydney gallery.

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“None of these young people were trained in photography or the arts at all,” project manager Harpreet Kalsi said.

“It was just what they saw. It was their everyday lives or realities that they took images of.”

The photos are varied – teenagers kissing, a syringe on a dashboard, a home-made tattoo, piercings, drugs, and even a barber shop. But there are also images of clouds and of friends on a street.

feature

boosts hep C awareness

ious diseases.

Rachael Hundy, 19, took one of the photos with her friend. It shows an arm with a tattoo of the word “sterile”.

“There are a lot of things that some young people engage in and they don’t know that they could be placing themselves at risk of a blood-borne virus.”

“Basically, if you don’t have a sterile environment when you’re getting a tattoo you’re more likely to contract the virus, so that’s why we have the word sterile as the tattoo,” she said.

A series of photos from young people in Cowra, in rural New South Wales, has already made a practical difference.

Through her involvement with the project Rachael learnt about hep C, a disease she previously knew little about.

“I knew there was a thing called hep C and basically that was it,” she said.

But the information they learnt while taking their photos means they are now prepared to change their behaviour.

“I didn’t know it was blood contact. I thought it was everything like blood, saliva, everything like that.”

Hepatitis Australia vice-president Stuart Loveday is pleased these young people have got the message.

She says it is not a topic which is often talked about with young people.

But he is now lobbying for a national public awareness campaign to reach more of the population.

“Hep C is more to do with drugs and tattoos and that, and at our age you’re not supposed to do drugs and have tattoos before you’re 18,” she said.

“So at high school you didn’t really learn much about this.”

Ms Kalsi says it targeted the kind of young people who would be vulnerable to contracting hep C. “We’re trying to make them think about anything that may put them at risk of hep C, so risky tattooing, unsterile piercing and drug use,” she said.

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“We need a widespread mass media public awareness campaign,” he said.

“There was one in New South Wales in 2000 and that’s been the only one so far in Australia.

But the art exhibition and, more importantly, the creation of the art were designed to address that perceived lack of awareness.

Streetshot

The teenagers cannot afford to get piercings or tattoos professionally so they do it themselves, and not always with clean equipment.

“We need to raise community awareness about the basic facts of hepatitis C transmission, the fact that there is a cure available through treatment, and the fact that very few people are accessing that treatment.”

• By Michael Turtle. Abridged from www.abc.net. au/news/stories/2009/05/18/2574117.htm (18 May 2009).

Streetshot is a photo-essay competition funded and managed by the Hepatitis C Council of NSW in conjunction with youth services across NSW as part of Hepatitis Awareness Week.

It is hoped Streetshot will become a national initiative in 2010. Check out more Streetshot photos at www.hepc.org.au. Ed.

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my story

Elisabeth’s story: having e but wanting something sp

M

y name is Elisabeth. I was first diagnosed with hep C in the early nineties and being totally ignorant I ignored it. At the time I was working and felt fit. I thought I would do something about it when I needed to.

I had oesophageal varicies. I was really tired and found work difficult and then the doctor told me I had about eight years to live. I decided if I only had eight years I may as well live somewhere special so I packed up and moved to Byron Bay.

I had been a member of NA and remained drug and alcohol free. I was working at a drug and alcohol service at St Vincent’s during this time and went to the gym regularly.

I had been living here for about a year when a friend of mine who worked with hep C suggested I go on the hep C trial with the CH100 herbal preparation. I had nothing to lose and took it religiously for six months. I knew after the first week that something was changing because my energy was coming back – and I was about to need it.

The reality of my hep C finally hit me one day when in the morning I returned from the gym and started getting a migraine headache. Not long after, I started bringing up a lot of blood. I rang a friend who called my doctor and within a few hours I was in intensive care, remaining there for a week.

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During this time I cared for someone who died of cancer and I had started a new relationship. I don’t know what was worse now because it all ended so badly. I spent a year being depressed.

feature

everything pecial I had a totally stressful year. I chain smoked and didn’t eat much and basically wanted to die.

They say be careful what you ask for because you might get it. My liver started to deteriorate and has continued to do so.

Once again I baffle the doctor who can’t understand why it’s getting worse when it should be getting better. There is no logical reason.

I now have breathing difficulties due to my illness and saw a surgeon regarding a transplant in May. Every other part of my body has to be in perfect condition. I haven’t smoked for a year and make an effort to walk daily but still if my lungs don’t take in enough oxygen I won’t get on the list because they said I could die in surgery.

I haven’t needed to drink or take drugs for thirty years now and I am lucky to have lived this long. I have lost a friend and a relative to hep C – they had continued to drink.

Once you have liver cancer it’s too late.

Hep C can kill so if you can stop smoking and taking drugs and definitely don’t drink, you will improve your long-term chances.

Surround yourself with loving, caring friends who will support you and most of all don’t buy into stressful situations. Life is too short.

I have everything I want now. I own my house and car and don’t owe anyone anything. When you are looking at the end though, all this means nothing compared to having good health.

•

Elisabeth, northern NSW

Stock photo via www.images.google.com.au

The little book of hep B facts Do you know your facts about hep B? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep B Facts, Hepatitis C Council of South Australia.

• Most Australians with chronic hep B come from four high-risk groups * people born in regions of high prevalence (e.g. Asia, the South Pacific, sub-Saharan Africa and the Middle East). * Aboriginal Australians * men who have sex with men * injecting drug users.

• In Australia, new hep B transmissions are mainly through sharing injecting equipment and unprotected sex with an infected person.

• Hep B is 10 times more infectious than hep C, and 100 times more infectious than HIV. • The hep B virus can live outside the body for about one week.

• You can’t get hep B from water, tears, urine, faeces, sneezes, coughs, hugs, mosquitoes, toilet seats, shaking hands or sharing food and crockery/cutlery.

See following editions of The Hep C Review for all 38 hep B facts – or check out the booklet at www.hepccouncilsa.asn.au/ littlebookB.html

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September 2009

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Visit the all new www.hepc.org.au and start clicking

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my story

Andrea’s story: my uncle

E

very thirty seconds, hepatitis B claims another life. Eight years ago, that clock struck a deep blow to our hearts. My uncle was just one of the many taken away by the silent killer. Although to the world, his death may just be a statistic, our family emerged from the loss with resilience and hope.

As I turn through pages of dusty photo albums, each picture beckons to me, inviting me to delve into long-lost memories. One is of my grandparents, another of my parents’ wedding, and a third of a laughing young man cradling a baby girl in his arms. It is at this photo that I gaze the longest, for my uncle and I were always very close.

He was like a big brother, constantly playing games with me and sneaking me candy.

My uncle became a chef at a restaurant in Taiwan, doing what he loved best. Unfortunately, it was at the greatest point in his life that he contracted hep B. My uncle was not aware of the danger he was in until the liver cancer had already reached a critical stage. By that time, it was too late.

All we could do was stay by his side and try to make his time left easier. I can still recall my beloved uncle lying there on the bed, thin and weak. We murmured words of encouragement to keep our morale high, urging him to pull through.

Hanging on to that tiny piece of hope gave us the courage to confront such a hardship.

In the end, my uncle eventually lost the battle against hep B. When he finally let go, our family was devastated. That was my first exposure to a tangible concept of death, and I mourned deeply.

For a long while, it seemed as if the dark clouds that had amassed above our lives would never part.

I still think about him. As my vision slowly refocuses on the photograph and I draw myself out of my thoughts, I realize the enormous influence this man had on my life. Even through his death, my uncle taught us to see things in a positive light, to always hope for the better. He gave us the strength to keep going and the strength to love.

Above all, he gave us the ultimate gift – the gift of human resilience.

• By Andrea Tan. Abridged from www.asianweek. com/2009/05/14/b-inspired-multimediacontest-winner-andrea-tan/

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HELLO HEP C HELPLINE I have hep C and I’ve also been on a methadone program for five years. Recently I have been thinking about undergoing treatment for my hep C. What do I need to know about methadone and hep C treatment?

As many as nine out of 10 people who take methadone also have hep C. The good news is that, generally speaking, methadone is safe for the liver (unless the liver is so damaged that it cannot handle methadone very well).

These days, being on a drug treatment program and/or being a current or ex injecting drug user does not exclude you from hep C treatment as long as you meet other criteria (see page 54 for criteria listing) and can commit to all the treatment processes, e.g. monitoring visits, blood tests and taking your medications on a regular basis.

Recent research has shown excellent results for people on methadone successfully completing hep C treatment and similar results can be expected from people on buprenorphine. For example: • The success rate of hep C treatment for people on methadone is the same as for people not taking methadone.

• Hep C treatment does not alter the effects of methadone.

• Methadone does not alter the effects of hep C treatment.

Access to hep C treatment is decided by hepatitis specialists and, unfortunately, people who are or have been drug users can face discrimination and may be excluded. If this happens, you can question this decision or try another specialist.

People experience a variety of side effects from hep C treatment to different degrees. Many people on methadone will ask to slightly increase their methadone dose, as this may help with managing side effects like aches and pains.

use and want to stay that way, hep C treatment can be a challenging experience. Extra support from AOD counsellors may help.

Hep C treatment side effects can be similar to methadone side effects. The good news is that few people have to pull out of treatment due to side effects.

Some tips for coping with treatment include • Eat a healthy diet and try to maintain a healthy body weight.

• Get some exercise – walking is one of the best exercises to help keep you healthy.

• Drink plenty of fluids and chewing sugar-free gum (to avoid dry mouth). Also, brush your teeth regularly after every meal, and use a mouth wash or floss.

• Talk to your doctor or health care worker on a regular basis.

• Get some support – try a support group or call the Hep C Helpline.

• Take it easy and rest when you are tired.

• Use a diary to help you remember key dates such as script renewals for your hep C treatment and methadone/buprenorphine treatment.

Remember that being on two different treatments can have its challenges, but with information, support and careful planning it can be managed.

For more information and resources on hep C treatment, please call the Hep C Helpline on 1800 803 990.

• Adapted from HCV Advocate fact sheets and AIVL’s Treatment just took a turn for the better!

Some of the side effects from treatment can feel similar to withdrawing. If you are free from drug ‘Hello Hep C Helpline’ is brought to you by the Hep C Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity.

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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 and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and Health Care Complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship.

Paediatric viral hepatitis clinic Hepatitis C virus (HCV) and hepatitis B virus (HBV) occur among children in Australia although exact numbers are unknown.

Children with HBV and HCV usually feel well and often are unaware of their infection.

The Paediatric Viral Hepatitis Clinic at Westmead provides early diagnosis, monitoring and, in some cases, treatment of children with these infections.

Assessment and regular follow up is essential to provide optimal care for children with hep B or C to reduce the risk of significant liver disease in later life.

For more information, contact Janine Sawyer at The Children’s Hospital Westmead (CHW) on 9845 3989 or by email: janines1@chw.edu.au

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

Access All Areas This DVD is for injecting drug users, especially heroin users. It aims to explain drug treatment options as well as the treatment of other drugrelated health problems such as dental care, hepatitis and overdose.

To obtain free copies of the DVD, please contact: phd@nationalmailing.com.au or 1800 020 103 (ext. 8654) or visit www.alcohol.gov.au

Council keyhole, HepCellence, continued from page 2. vibrant Cabramatta area, CCC is a large and dynamic organisation. Partnering with CCC has been very fruitful: the consultation process has enabled us to raise awareness of hepatitis amongst staff, develop skills in working in culturally and linguistically diverse (CALD) communities, and has facilitated the development of a CCC in-house training package to enhance and sustain hep C service provision.

The HepCellence pilot is an ongoing project that is designed to grow, adapt and respond to the different contexts within which hep C work takes place. Through building working relationships with external organisations we strive to develop mutually beneficial strategies that meet the distinctive needs of their workers and clients.

The knowledge and skill we have acquired in the course of partnering with KRC and CCC have been invaluable, and will be constructively applied to further education and development initiatives the Council offers.

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Penny Scott, HCCNSW

membership matters You are vital to us — we are here for You audrey lamb community forum and annual general meeting Please mark your diary for our 3rd Audrey Lamb Community Forum on Thursday evening 12 November 2009. A light supper will be served from 6pm. Hep C treatment expert and clinical nurse consultant at Nepean Hospital, Western Sydney, Vince Fragomeli, will provide information on current treatment trials and stories he has collected while working with sleeves rolled up on the front line!

We are seeing an exciting new round of treatment trials involving triple combination therapies commence in NSW. Please come along and find out how these trials are likely to change the face of hepatitis C treatment leading hopefully to shorter treatment durations with higher cure rates.

Following Vince’s presentation will be our annual general meeting wherein we receive votes from our current financial members on a range of matters. One of the items requiring a majority of votes is the proposed name change of your organisation to Hepatitis NSW. So please attend to be involved in this important decision-making process.

Members will receive an invitation to the forum, formal notice of the AGM and a letter explaining the name change proposal.

MEMBERSHIP RENEWAL Spring has sprung…can’t you hear the grass grow?

If you haven’t renewed your membership for 2009, don’t let the grass grow under your feet! Our AGM is coming up in November and you will need to be a current financial member to cast your vote on important matters pertaining to your Council. Time’s up - if you’re not in it, you’re on the outer!

Hop on to our secure website payment facility at www.hepatitisc.org.au or use Australia Post to deliver your hard copy renewal to PO Box 432, Darlinghurst NSW 1300. Remember your membership fee can be zero if you are in financial hardship.

As always, Professional and Organisational members are requested to quote their invoice numbers when paying, to ensure correct payment allocation.

We look forward to receiving your renewals very soon.

A historical perspective

Our bonds with associated organisations such as the Australian Haemophilia Foundation and the various Drug and Alcohol Agencies have also developed well, and we have been well supported by the Australian Gastroenterology Institute.

Taken from Edition 6, September 1993.

We are now an incorporated body, registered as a charitable institution. It was a lot of work to get this through all the red tape, for which we have Richard Booker mostly to thank.

During the year, membership in NSW has grown to 239 with a pleasing increase in professional memberships. Victoria has its own branch with 53 members and WA now has about 100 members. A branch is functioning on the Central Coast (NSW) and we have phone support workers in country towns such as Lismore, Coffs Harbour, Kempsey, Taree, Port Macquarie, Newcastle, Wollongong, Lithgow, Dubbo, Orange, Glen Innes, Barraba and Wagga. The people who look after the Hotline are a wonderful group and there are always vacancies.

The second annual meeting of the Australian Hepatitis C Support Group will be held on 18 September at Woodstock Community Centre, Burwood. Nominations have been received for President: Warren Wright, Vice President: John Mackenzie, Secretary: Steve Hopper, Treasurer: Anita Rosz, committee members: John Saunders, Paul Harvey, Audrey Lamb.

This will also be the annual meeting of the NSW branch of the Group. Nominations have been received for Chairperson: Andre Van Altena, Treasurer: Bernard Fisher, committee member: Chris Lawrence.

• Audrey Lamb, Australian Hepatitis C Support Group (HCCNSW) 1993.

The Hep C Review

Edition 66

September 2009

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9332 1599 (Sydney) SW regional) 1800 803 990 (Freecall N

46

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for more info

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coming september transmission @ hepatitisc. org

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NOW AT RPA HOSPITAL

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counselling services We offer free confidential medical and  Testing and treatment for STIs (sexually transmissible infections)  Hepatitis vaccinations  Hepatitis C testing & referral  HIV testing and counselling  HIV treatment and management  Free condoms and lubricant  NSP (needle syringe program)  Sexual health check-ups  Sex worker health checks tion, For appointments and other informa ses. call 9515 3131 or drop in to see our nur

Ground Floor, Page Building (Bldg.14), Royal Prince Alfred Hospital, 119-143 Missenden Rd, Camperdown

The Hep C Review

Edition 66

September 2009

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promotions

hep C bookmarks O

ur hep C bookmarks have proved handy in promoting greater awareness about hep C in the general community.

Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

Can you help raise awareness by distributing the bookmarks?

Ideas include: • putting them in doctors’ surgeries • taking them to your local library • taking them to your local community centre.

We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hep C Helpline (on 1800 803 990).

• HCCNSW

Hepatitis C is not classified as a sexually transmitted disease The virus is transmitted when infected blood from one person gets into the bloodstream of someone else For more information about how hep C is transmitted, visit www.hepatitisc.org.au or call the Hep C Helpline (see over)

Hep C is a serious illness caused by a tiny virus (germ) that damages the liver Hep C is transmitted when infected blood from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker does not use sterile equipment and sterile techniques.

To find out about safer tattooing and piercing, visit

www.hepatitisc.org.au

or call the

Hep C Helpline

(see over)

48

www.hepc.org.au

Hepatitis C is hard to catch.

It is not transmitted by touching someone who has it or drinking out of the same cup or using the same knives and forks.

It is transmitted when infected blood from one person gets into the bloodstream of someone else.

For more information about hepatitis C visit www.hepatitisc.org.au or call the Hep C Helpline (see over)

‘GRASS ROOTS TO NATIONAL ACTION’ NATIONAL HEPATITIS HEALTH PROMOTION CONFERENCE Hobart, 29 - 30 October, 2009 Hepatitis Australia is hosting a two day conference for health and communtiy workers with an interest in viral hepatitis prevention and support.

The conference will feature plenary addresses from health promotion experts, health promotion skills workshops and presentations on viral hepatitis prevention, education, health maintenance and support projects.

It will showcase hepatitis health promotion projects and strategies used across Australia to engage various populations and will explore issues in working collaboratively to achieve change. Conference streams will include: using new technologies and social networking sites; the role of peers; building partnerships; health promotion in prisons; Aboriginal and Torres Strait Islander communities; working with youth; CALD communities and people living with hepatitis.

Visit the Hepatitis Australia website for more information on abstract submission and registration. www.hepatitisaustralia.com

research updates Hypertension drug could reverse liver hep C disease

Genotypes and risk factors for hep C in the Gaza strip

UK – There are hopes a blood pressure drug could reverse the effects of early-stage liver disease in some patients, and help them avoid a transplant.

Palestine – The present work aims at determining HCV genotypes in patients with chronic hep C infection, in the Gaza strip. The most common risk factors for HCV transmission were also evaluated in conjunction with the genotyping data.

During a clinical trial, researchers at Newcastle University (UK) gave Iosartan, normally prescribed for hypertension, to 14 people with hep C. All the patients had liver scarring (cirrhosis), but in half of them the scars shrank, allowing the organ to repair itself.

The findings are described as promising and further studies are planned. These would involve patients with liver disease caused by obesity and then, to follow, alcohol, hereditary and autoimmune diseases.

“At the moment we have no proven effective way of treating people with chronic liver disease other than transplantation,” Professor Derek Mann from Newcastle University said.

“This early stage trial has shown that we can shrink liver scarring in some patients and shows promise for a treatment that could make a huge difference to the lives of thousands of people.”

• Oakley F, et al. Angiotensin II Activates IkB Kinase Phosphorylation of RelA at Ser536 to Promote Myofibroblast Survival and Liver Fibrosis. Gastroenterology;136(7):2334-2344 Abridged from http://news.bbc.co.uk/2/hi/ uk_news/england/tyne/8076692.stm (1 June 2009).

The study shows that there are only two major genotypes of HCV in Gaza Strip: Genotype 1 (1a and 1b) collectively contribute to 28% of the cases, and genotype 4 (4a, 4c and 4d) collectively contribute to 64% of the cases.

Mixed infection with the two genotypes was also present among 7.6% of the cases.

In this study a statistically significant relationship was established between the distribution of these genotypes and the patients’ residential home or area, travelling history, history of blood transfusion and history of surgical operations.

The present study is the first to link HCV genotyping in Gaza strip with its possible routes of transmission. Travelling to endemic countries (especially Egypt), blood transfusion and surgical operations are major routes of hep C infection in the Gaza strip.

The results indicate that medical and hospital procedures may be responsible for the majority of hep C infections in the Gaza strip.

• Ayesh BM, et al. Most common genotypes and risk factors for HCV in Gaza strip: a cross sectional study. Virology Journal 2009; 6:105 Abridged from www.virologyj.com/ content/6/1/105 (16 July 2009).

In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need.

Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. They help broaden our overall knowledge and develop consensus opinion on a particular research topic.

The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). Ed.

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research updates Protein diet and liver disease examined USA – Diets high in protein and cholesterol are associated with a higher risk of hospitalisation or death due to cirrhosis or liver cancer, while diets high in carbohydrates are associated with a lower risk.

Researchers investigated whether dietary nutrient composition was associated with the subsequent development of cirrhosis or liver cancer in a representative sample of the US population.

They utilised data from 9,221 participants in the National Health Examination Survey who had completed a 24-hour dietary recall questionnaire.

Participants were excluded if they suffered from cirrhosis or liver cancer at the start of the study, or received a diagnosis within five years.

During the follow-up period, an average of 13 years, 123 people were diagnosed with cirrhosis (118 people) or liver cancer (5 people). These people were more likely to be older, more obese with more central fat distribution. They had lower educational attainment and higher alcohol consumption, and were more likely to be male, diabetic and non-white.

“We identified that protein and cholesterol consumption were associated with elevated risk, whereas consumption of carbohydrates was associated with reduced risk of hospitalisation or death related to cirrhosis or liver cancer,” the authors report.

“The significant associations of protein, carbohydrate and cholesterol intake with cirrhosis or liver cancer that we described in the entire study population, were limited to overweight or obese persons,” the authors noted.

“Our study raises the possibility that dietary factors may be important, modifiable, and hitherto unrecognised determinants of liver disease progression,” the authors conclude.

• Ioannou, George, et al. The Association Between Dietary Nutrient Composition and the Incidence of Cirrhosis or Liver Cancer in the U.S. Population. Hepatology, 2009;50:175–184.

Abridged from www.sciencedaily.com/ releases/2009/07/090701131338.htm (1 July 2009).

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Hep C taking longer to catch among people in developed countries who inject drugs USA – Researchers funded by the National Institute on Drug Abuse have found that the time from onset of injection drug use to HCV infection for injecting drug users (IDUs) in developed countries has lengthened since 1995.

The researchers analysed 72 studies of HCV infection in IDUs published between 1989 and 2006. In addition, the researchers compared studies from developed countries (such as the United States) with studies from developing countries. They also compared studies completed before 1995 with studies completed after 1995 to measure the impact of increased HIV/HCV awareness in developed countries.

They found that in developed countries, HCV prevalence in IDUs who had been injecting drugs for less than two years had declined from an estimated 53% before 1995 to 38% more recently.

The prevalence in developing countries remains higher (e.g. 59% prevalence of HCV at one year of drug injection). Whether or not the prevalence in developing countries had decreased at all since 1995 could not be determined because only one study collected data on HCV in developing countries before 1995.

Although the results show that many IDUs avoid HCV infection in the first year of drug injection, a substantial proportion of new injectors still acquire HCV rapidly.

The authors conclude that a heavy investment in public health resources will likely be needed to make further gains in HCV prevention.

• Hagan H, et al. Meta-regression of hepatitis C virus infection in relation to time since onset of illicit drug injection: The influence of time and place. Am J Epidemiol.

2008;168(10):1099–1109.

Abridged from www.drugabuse.gov/ newsroom/09/NS-07.html#Anchor-Research46919 (8 July 2009).

research updates The bug that can blast away cancer UK – A common virus which causes stomach upsets is giving hope to cancer patients – by boosting their immune system and blasting away tumours.

Almost 80 patients with advanced forms of liver cancer, head and neck tumours and breast cancer are taking part in trials using a drug made from the reovirus. A number have seen astonishing results, with tumours shrinking and in one case disappearing altogether.

Reolysin appears to kill off cancer cells by rupturing their walls. As the tumours shrink they become less harmful and more easily treatable by chemotherapy. At the same time, Reolysin seems to “wake up” the immune system so it can recognise cancer cells as invaders, prompting the body to mount an attack on harmful cells.

Canadian firm Oncolytics Biotech, which created Reolysin, is working on trials with researchers from St James’s Hospital in Leeds, the Royal Marsden Hospital in London and the Royal Surrey County Hospital.

“We have had a few dramatic responses to Reolysin but we still have to be very cautious about getting up too much hope. We cannot say people have been cured. However, it is exciting and has got real potential,” lead researcher, Professor Alan Melcher, said.

Professor Melcher said: ‘It is a completely different approach to treating cancer. It is not just another drug. It is a virus and it seems to be very well tolerated in combination with chemotherapy.

Experts say larger trials are needed before Reolysin can be widely available to patients. That could take up to five years.

“If it proves successful in larger trials, the reovirus could one day become an effective new treatment to be used alongside chemotherapy, radiotherapy and surgery to benefit people with some types of cancer,” Liz Woolf, of Cancer Research UK, said.

• Abridged from www.dailymail.co.uk/health/ article-1191454/The-bug-blast-away-cancerDrug-virus-extends-patients-lives.html (8 June 2009).

High soybean consumption increases risk of liver cancer in women Japan – Women who eat a lot of soybean products are up to four times more likely to develop liver cancer than those who eat small amounts, a major government health survey has found.

The Ministry of Health, Labor and Welfare research team that carried out the survey says isoflavones should be consumed in moderation, through people’s daily diets.

The team followed the health of 20,000 people between 1993 and 2005. The participants were aged between 40 and 69 at the start of the survey.

Altogether, 69 men and 32 women developed liver cancer. Participants were asked how much soybean product they ate, and the relationship between two isoflavone constituents and the rate of cancer was examined.

A clear connection between the amount consumed and the risk of liver cancer was seen only in women. Women in the group that consumed the most (80 grams or more of bean curd) were up to 3.9 times more likely to develop liver cancer than the group that ate the least (less than 40 grams of bean curd per day).

Norie Kurahashi, a researcher in the National Cancer Centre’s Epidemiology and Prevention Division who was part of the ministry’s team, said that the structure of isoflavone constituents is similar to the female hormone oestrogen.

“The greatest risk factors for liver cancer are the type B and C hepatitis viruses. We want women to check whether they are infected, and if they are, we want them to take care not to consume too much soybean products,” Kurahashi said.

However, the researcher added, “Even if they are not infected, there is a need to take care not to consume too much.”

• Kurahashi N, et al. Isoflavone consumption and subsequent risk of hepatocellular carcinoma in a population-based prospective cohort of Japanese men and women.

International Journal of Cancer 2008; 124(7):1644 -1649 Abridged from http://mdn.mainichi.jp (11 Mar 2009).

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research updates Women with hypothyroidism at increased risk of liver cancer USA – Long-term hypothyroidism in women significantly increases the risk of developing liver cancer, according to the results of a study published in Hepatology.

Factors that increase the risk of developing liver cancer include long-term, heavy alcohol use and chronic infection with hep B or C. The thyroid releases hormones that control metabolism. Hypothyroidism is a condition in which the thyroid gland fails to produce enough thyroid hormone. Hypothyroidism is more common in women than men and also in individuals over age 50 or those who have been exposed to radiation.

There is evidence of a link between thyroid disease and hep C. There is also evidence that hypothyroidism is related to inflammation of the liver cells. However, no clear link has been established between hypothyroidism and liver cancer.

Researchers in Texas conducted a study to compare incidence of liver cancer among patients with and without hypothyroidism. The study included 420 patients with liver cancer and 1104 healthy control subjects. The researchers found that a long-term history of hypothyroidism (10 or more years) was associated with a statistically significant high risk of liver cancer in women – specifically, they were 2.9 times more likely to develop liver cancer than women without thyroid disease.

It is unclear whether the weight gain often associated with hypothyroidism plays a role in the development of liver cancer. Research will likely be ongoing to continue to evaluate this link.

• Hassan MM, et al. Association between hypothyroidism and hepatocellular carcinoma: A case-control study in the United States. Hepatology. 2009; 49: 15631570 Abridged from http://patient. cancerconsultants.com/CancerNews.aspx?Do cumentId=43697&Keywords=cancer,news,in formation,treatment,Women,Hypothyroidism ,Risk,Liver%20Cancer,hepatocellular,carcino ma,HCC (22 June 2009).

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Hep C increases the risk of heart disease USA – Hep C increases the risk of coronary artery disease, a large American study published in Clinical Infectious Diseases has found. The study involved over 160,000 individuals; approximately half had hep C. Despite having fewer risk factors for cardiovascular disease, those with hep C were more likely to have been diagnosed with coronary artery disease.

Investigators compared the risk factors and prevalence of coronary artery disease between 82,000 hep C-infected veterans and 90,000 hep C virus-negative veterans.

The individuals infected with hep C had fewer traditional risk factors for heart disease and stroke than the uninfected patients. However, the hep Cpositive patients were significantly more likely to have liver problems and be dependent on alcohol or drugs.

Even though the individuals infected with hep C had a lower prevalence of traditional risk factors for coronary artery disease, the investigators’ statistical analysis (which controlled for possible confounding factors) showed that the hep C independently increased the risk of such diseases by 27%.

In a comparison of subjects with hepatitis C to subjects without hepatitis C, infection is associated with a higher risk of cardiovascular disease, even after adjustment for traditional risk factors, the investigators concluded.

“The reasons and mechanisms of this association need further study,” they added.

• Blutt AA, et al. Hepatitis C virus infection and the risk of coronary disease. Clin Infect Dis 49 (online edition), 2009.

Abridged from www.aidsmap.com/en/ news/FEE39D43-0C66-4EA4-8DC10ED557146A6D.asp (12 June 2009).

research updates Critiquing delivery of hep C treatment in OPT clinics

Getting ready for an Aussie hep C vaccine?

Australia – In an effort to increase the number of people undergoing hep C treatment, initiatives are planned or underway to provide treatment in non-specialist services, such as opioid pharmacotherapy treatment (OPT) clinics.

Australia – The University of NSW vaccines research initiative began in 2007 with the overall aim of establishing a clinical and laboratory framework to conduct Australian field trials of candidate vaccines to prevent hep C infection.

Social researchers considered the implications of this new approach to treatment delivery, taking account of individual-level issues generally discussed in the literature, such as knowledge of treatment and concerns about side effects. Also explored were the less visible organisational and structural factors that would equally influence the successful implementation of hep C treatment in OPT services.

The initiative follows three cohorts of high risk, but uninfected individuals with regular threesix monthly interviews and blood sampling. The three Hepatitis C Incidence and Transmission Study (HITS) cohorts are based in prisons (HITSp), the community (HITS-c) and people who become infected (HITS-i).

Provision of hep C treatment in OPT services raises a broad range of pressing questions, from individual knowledge and concern about treatment, to workforce issues, such as discrimination, and tensions between the need for supportive care during hep C treatment and the surveillant, regulatory nature of OPT clinic operations.

An implication of this is that a thorough critical examination of the structure and delivery of all services involved is necessary.

Social research can play a unique role in this assessment because of its ability to generate detailed insights into lived experience and make use of social theories that allow previously invisible operations of power to become visible.

The researchers concluded that the success of hep C treatment in new sectors, such as OPT clinics, is not a given. Close attention needs to be paid to the context and culture in which OPT is delivered. In turn, this needs to be considered alongside the context and culture necessary for successful hep C treatment delivery.

• Abridged from the abstract: Treloar CJ, et al.

Hepatitis C treatment in pharmacotherapy services: Increasing treatment uptake needs a critical view. Drug Alcohol Rev 2009;28:436440 Abridged from www3.interscience.wiley.com/ journal/122498538/abstract (6 July 2009).

Laboratory studies are currently investigating the characteristics of virus genotypes in people with very early infection, and their immune defences to better understand why some people clear the virus and others develop chronic infection.

The HITS-p and HITS-c cohorts now have over 500 people enrolled. In HITS-p, more than 60 people have become infected. Their blood samples are currently being studied to examine how the virus “escapes” from the efforts made by the immune system to control or clear it.

Some people studied who inject drugs are at high risk of infection but remain uninfected. They have responses against the virus made by specialised white blood cells called T cells. These responses may provide protection against initial infection or a better chance of clearing the virus later. If confirmed, these responses are very likely to play an important role with vaccine development.

In the HITS-c cohort, insight is being gained into likely challenges in successful engagement of the target population (people who inject drugs) if and when a vaccine is developed. Published work indicates that they generally have low immunisation rates (for heps A and B).

The ongoing studies are exploring people’s knowledge and attitudes in relation to vaccines and clinical trials, and also the best means to allow affected community input into the design and conduct of clinical trials of HCV vaccines.

• Abridged from correspondence: Andrew Lloyd, Centre for Infection and Inflammation Research, UNSW (17 July 2009).

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interferon-based therapy Interferon-based therapy 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: Blood tests: People must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive).

Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective

forms of contraception (one for each person). Female partners of men undergoing treatment must not be pregnant.

Age: People must be aged 18 years or older.

Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hep C Helpline for more information).

Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks.

Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests must be performed at the same

laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.

People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12.

Liver biopsy no longer a general requirement for treatment From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment.

CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks.

Psychiatric status during therapy should be monitored.

A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peginterferon monotherapy if they meet certain criteria.

Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.

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complementary medicine Note that some people with genotype 2 or 3 may still require biopsy to determine whether they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring.

See “Monitoring Points”, page 54.

For further information on this issue, please speak to your treatment specialist.

Alternative access People wanting to access 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, contact your nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see page 56).

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 or 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 New South Wales. Phone the Hep C Helpline for the contact details of your nearest centre.

In New South Wales Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment.

• HCCNSW (above info is reviewed by the Department of Health and Ageing prior to publication).

Complementary medicine Good results have been reported by some people using complementary therapies, while others have found no observable benefits.

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (Edition 24, page 8). A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (Edition 45, page 9).

Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments.

Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to.

• Will they consider all relevant diagnostic testing?

• Will they consult with your GP about your hep C? • Is the treatment dangerous if you get the prescription wrong?

• How has this complementary therapy helped other people with hep C? • What are the side effects?

• Are they a member of a recognised natural therapy organisation?

• How have the outcomes of the therapy been measured?

The Hep C Review

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner.

You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies.

It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee.

It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done.

It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist.

If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hep C. Additionally, they should be members of a relevant professional association.

Phone the Hep C Helpline (see page 56) for more information and the contact details of relevant professional associations.

• HCCNSW

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support and information services NSW Hep C Helpline 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 that are important to you. We also provide referrals to local healthcare and support services.

• 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers).

Hep C Council NSW support group A chance for people living with hep C to meet others and get some support. We meet on the 3rd Tuesday of each month, from 6–8 pm at the Hepatitis C Council, Level 1, 349 Crown Street (corner of Crown and Albion Streets), Surry Hills.

Food and drink provided. For more information please call the Hep C Helpline on 1800 803 990.

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

Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au

offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW) for advice and details about your nearest clinic.

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

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

Sexual health clinics Although hep C is not classified as a sexually transmissible infection, 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 they keep all medical records private.

Community health centres Community health and neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community health centres. Neighbourhood centres can be found by contacting your local council.

General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs.

Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the healthcare system. The NSW Hep C Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training.

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 about MHAHS, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au

Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics

The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au

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Additionally, the Hep C Helpline distributes some information resources in various languages.

support and information services Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints; and the appointment of attorneys and guardians. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who 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 to a volunteer please phone 9332 1599 or 1800 803 990 (free call NSW).

working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For information please contact Carla Silva on 4922 3429 or Tracey Jones on 4921 4789.

Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome.

Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information please contact Vince on 4734 3466.

Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For more information please phone 6620 7539.

Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org

Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For information please contact Lynelle Wood on 0418 116 749 or Jana Vanderjaght on 0418 207 939.

Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning 10.30–11 am, (Eastern Standard Time). Go to 3CR’s website at www.3cr. org.au and follow the prompts.

Parramatta support group A support group for people living with hep C, including those in treatment. From 7 pm to 8.30 pm, first Thursday of every month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 162 Marsden St, Parramatta. There is no parking on site. It is a 10-minute walk from Parramatta station. For information please contact Susan on 9845 5627.

Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Coffs Coast hep C support group A self directed peer support group for people living with or receiving treatment or recovering from hep C. For more information please contact Trevor on 0432 141 574 or Mal on 0408 305 833.

Coffs Coast family and friends support group A self directed peer support group for the family and friends of those living with or receiving treatment or recovering from hep C. For more information please contact Debbie on 04 1961 9859 or Corinne on 04 2209 0609.

Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals

Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. It offers free and confidential services to affected people and their families and carers. For more information contact Traids on 9515 5030 OR 1800 108 098.

Westmead hep C information night Our information nights are organised for people with hep C, families, friends and interested others. Parking is available at the hospital but you will need $6 in coins. Alternatively, it is about a ten-minute walk from Westmead station. Go to the main entrance of the hospital and ask for directions at reception, or look for our signs. There is no charge for the information night and people from any area are most welcome. For information please contact Susan on 9845 5627.

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noticeboard Our loan library

Upcoming events

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.

Inner city Sydney support groups: 15 September 20 October 17 November Level 1, 349 Crown St, Surry Hills.

Videos and DVDs

Please phone the Hep C Helpline for more information about these events (see page 3).

If you want your event featured here, please contact the editor (see page 3).

Everybody’s Business (MHAHS/ANCAHRD, 2004): Covers 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 minute 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 about our products or services, please visit our website for more information: www.hepc.org.au/about-us/ complaints-and-disputeshandling.

Or see page 3 for our phone number and postal address.

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Want to help your Council?

We are a membership organisation, governed by a board elected primarily from our membership.

We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hepatitis C. Image via www.images.google.com

The Big Combo (HCCNSW, 2002) 20 minute DVD featuring two people who approach treatment for hep C in very different ways.

Includes information on treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English.

As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for The Hep C Review and Transmission Magazine.

• proofreading for The Hep C Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker Want to find out more? Please phone the Hep C Helpline for more information.

For more information, visit www.hepc09.org.uk

membership form / renewal / tax invoice An invitation to join or rejoin the Council 1. Please complete A or B or C, then complete other side

A. For people affected by HCV, or other interested people

Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: (02) 9332 1730

P ostal address

About the Council

S uburb/ town

Name

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 in New South Wales.

State

P ostcode

Home phone

E mail:

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.

Name

Privacy policy

Postal address

The Hepatitis C Council of NSW respects and upholds your right to privacy protection. In accordance with the National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information.

B. For individual healthcare or related professionals

Occupation

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

For a copy of the policy please contact the Council office on (02) 9332 1853 (Sydney callers) or 1800 803 990 (NSW regional callers), or visit our website: www.hepc.org.au

Ma y we li st yo u o n o ur re fe rra l d a ta base ?

Membership

Free copies of The Hep C Review required

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.

New South Wales health care workers

Name of agency

Position

If you would like 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.

Suburb/town

In New South Wales, 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.

2 5 10 20 50 80 160

C. For agencies, organisations and companies

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 New South Wales only).

As the most widely read hep C publication in New South Wales, targeting both people affected by hep C and healthcare workers, The Hep C Review is provided free to all members of the Council.

1

Contact person

Postal address

State

Postcode

Work phone

Work fax

Mobile

Email:

May we list you on our referral database?

Free copies of The Hep C Review required

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2 5 10 20 50 80 160

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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

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

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

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

Card number:

I'm not sure - please check your database 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 :

E xp i ry date:

MasterC ard

Visa

month:

Bankcard

year:

Waged : for people in paid employment

$25

Concession: for people on government benefits

$10

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

$0

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

If paying by cheque or money order, please make payments out to: Hepatitis C Council of NSW - Membership

Cardholder signature:

P lease print cardholder name:

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

Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285

4 . C o n ta c t w ith th e C o u n c il o ffic e .

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

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:

Dated:

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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