Hep Review ED64 by HepatitisNSW

The Hep C Review Autumn

March 2009

Edition 64

Obamaâ&#x20AC;&#x2122;s HIV fix and NSP New directions in hep C therapy Making the healthcare system work for you How do some people avoid catching hep C? Hep C Review ED64 March 2009 1 Alcohol use andThehep C - taking a closer look

editor’s intro

i everyone and welcome to your first edition following the election of Barack Obama, 44th president of the United States. It is hoped that the new president will make a real difference to the way HIV and hep C are combated around the world. HIV and hep C prevention is, by nature, politicised. However you feel about George W Bush, his administration’s steadfast global opposition to harm reduction has led to greater numbers of people around the world becoming infected and dealing with chronic infectious illness. We hope that, by the time this edition hits the streets, Barack Obama will have signed off on new initiatives that include health promotion, peer education, needle and syringe programs and, possibly, safe injecting facilities. In addition to some articles about what an Obama Administration might mean for HIV prevention policy, in this edition we also bring you other interesting hepatitis-related news. You will find more on the United Arab Emirates and its struggle to develop sound and reasoned infectious disease policy. In this edition, you’ll find an exploration of alcohol and hep C, and an overview of how to make the healthcare system work better for you. As usual, we also carry several personal stories, including one that I, as an ex Mount Isa mine worker, can especially relate to. And for some last minute news — the British Library in London, UK, has requested copies of each edition of The Hep C Review, going back to ED01. We have gone international! •

Council keyhole

New Council activities and services in 2009 With business planning well underway for the remainder of our current strategic plan period that takes us to 2010, we are pleased to report on some forthcoming new services and activities that will enhance the response of the Hepatitis C Council of NSW to the hep C epidemic. A new two-year Aboriginal community-specific project will begin in April. An Aboriginal Project Coordinator will be recruited to lead an initiative that works in partnership with Aboriginal nongovernment organisations, Justice Health and NSW Health. The project will help develop the capacity of mainstream prevention services to access more Aboriginal people, increase the number of Aboriginal people accessing HCV testing, as well as those people accessing and completing treatment for hepatitis C. This initiative will also support workforce development in correctional settings. A six month project will assess how to improve the access by some people to needle and syringe programs (NSP) that are based in pharmacies. People who are from culturally and linguistically diverse backgrounds and who inject drugs are known to use pharmacy-based NSPs. This partnership project aims to investigate the successes and barriers of what is currently happening, and work to build on those successes and so contribute to HCV prevention efforts. Continued on page 41.

Paul Harvey, Editor

Weblink of the month –

A pretty neat, USA-based, online hep C quiz game.

http://www.hcvadvocate.org/quiz/Quiz_1/quiz_1.html

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

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Cover pic by Mannie Garcia, taken from http://blog.pennlive.com via www.images.google.com

acknowledgements Calling all members

Editor/layout/production: Paul Harvey Editorial committee: Tim Baxter Kay Bazley Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang Scott West

Look inside for your Membership Matters special offers (p45). Our 2009 membership year began on 1 March 2009. We look forward to receiving your applications or renewals. It’s now easier than ever — join or renew securely online by visiting: www.hepatitisc.org.au or use the form at the back of this magazine.

Seeking your story Personal stories provide balance to our information articles. They are often written by people with hep C, but we welcome submissions from family members or friends, or health care workers. Please consider writing in with your story. Published articles attract a $50 payment. The author’s name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you do not want your name published.

The HCR medical & research advisors: Dr David Baker Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Geoff McCaughan Dr Cathy Pell Assoc Prof Carla Treloar Dr Ingrid van Beek Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Andi Andronicos Prue Astill Sarah Bowman Judith Campbell Margaret Hancock Adrian Rigg Aviva Shifreen Maureen Steel Cindy Tucker

Comic: Andrew Marlton: firstdogonthemoon@optusnet.com.au Contact The Hep C Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@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

Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor. Articles considered inflammatory or vilifying will not be published. We’re really looking forward to receiving your articles. • Ed

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 the NSW Health Department. Aside from HCCNSW editorial comment, the views expressed in this magazine or 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 spacing, consistency and accuracy, and because of space restrictions. Contributors should supply their contact details — although we do not publish such details unless asked. We’re happy for people to reprint information from this magazine provided that The Hep C Review and author/s are credited, 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 used for illustrative purposes only. They have no actual connection to hepatitis C.

The Hep C Review

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March 2009

contents Opinion

News 5

Five thoughts from the sixth Australasian Viral Hepatitis Conference

Christopher Lawford talks hep C

Ending drug prohibition

Recent results on new therapies

Obama’s HIV fix: NSP a major component

Treatments race is on

Promotions

US kids get hep C treatment

RPA sexual health clinic

Fear of deportation makes many hide disease

HepConnect 46

Doctors divided over hepatitis deportations

HALC legal service

30-year tribulation of Irish anti-D women

Access All Areas

Nokia avoids fault in discrimination case

Online & connected

Japan initiates treatment subsidy scheme

Lost at C supportive drop-in evenings

Canadian lawsuit over reuse of syringes

Easy Read Magazine 48

UK national awareness campaign

The most precious gift

Depression drugs ease fibromyalgia

Want to help your Council?

Long wait for new livers in Iceland

Research updates

Combination oral antivirals trial

Doctors demand money to fight hep B

New treatment for advanced liver cancer

Liver cancer drug trial — a bitter pill

Australians want less alcohol advertising

Second chance for treatment in Australia

Cigarettes and hep C raise liver cancer risk 49 Silibinin and treatment for nonresponders 49 Vaccine shows benefit in phase II trial 50 Needlestick injuries, OH&S and correctional staff 50 Nonalcoholic fatty liver disease and hepatitis C virus: partners in crime 51 Type 2 diabetes, hep C and treatment response 51 High incidence of reinfection among injecting drug users following spontaneous clearance 52 Vitamin D deficiency and chronic liver disease 52 Development of liver cancer 13 years after sustained response 53 Medical web searches can trigger anxiety 53

Swiss approval of prescribed heroin

Debate on US injecting facility

Features Alcohol use and hepatitis C: taking a closer look 16 Social determinants of health: working conditions 22 Getting the most from your healthcare system

Hep B falling under our radar

How do some people avoid hep C while injecting for many years?

Mental health problems and Australia’s youth

Truce on hardline sentencing

Jack Bruce is back and he feels free

New directions in hep C therapy Hepatitis B: a primer

Regular features Council keyhole —

Q&A — Whatever happened to jet injectors?

Harm reduction poster — Abscesses

Hello Hep C Helpline — Complementary medicines: how can they help me?

Membership matters

A historical perspective — ED4, May 1993

Interferon-based therapy

Complementary medicine

Support and information services

My story The Miner’s story: shiftwork and hep C treatment can mix 19 Dave’s story: my liver donor’s presence 20 Helen’s story: getting hep C and dealing with it 36 Angie’s story: embracing the will 38 Joanne’s story: more than I bargained for 39

Noticeboard 58 Upcoming events 58 Membership form / renewal / tax invoice

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Stock photo - image via Google Images

Swiss approval of prescribed heroin Switzerland — Swiss voters have approved a change in health policy to offer some people who are dependent on heroin, prescribed supplies of the drug.

Debate on US injecting facility USA — San Francisco is about to create the first legal drug-injecting facility in the country — a place where users can bring in and use drugs obtained on the street, using clean needles in a medically supervised room. A year ago, the San Francisco Department of Public Health, the Alliance for Saving Lives and a consortium of community members gathered to discuss the idea of opening a legal injecting facility.

Final results from the national referendum showed 68% of voters supported the plan.

San Francisco’s Tenderloin district has been identified by officials as the most likely location for the safer injection facility. However, residents are concerned about the impact of the centre on their neighbourhood.

The heroin vote was one of a series of referendums held to decide policy on illegal drugs.

Their resistance doesn’t surprise Captain Gary Jimenez of the Police Department’s Tenderloin Station.

Under the scheme — initially trialled in the early 1990s — registered dependent users who had failed all other treatments visit clinics up to twice a day, where they inject heroin under medical supervision. They can also be treated for other medical issues and mental health problems.

“I do know that, on the issue of a safer injection facility, many people in the community are saying good, but not in my neighbourhood,” he said.

Supporters say it has had positive results — getting longterm heroin dependent people out of Switzerland’s once notorious “needle parks” and reducing drug-related crime. • Abridged from BBC News, 30 Nov 2008.

Dr Paul Quick, a physician involved in the care of homeless people in San Francisco, said many of the city’s homeless drug users suffer from underlying mental illnesses. For these individuals, the injecting facility would not only address their dependencies, but also their mental health needs. • By Philip Hoover. Abridged from www.insidebayarea. com

news Christopher Lawford talks hep C USA — Christopher Lawford, the nephew of President John F. Kennedy, grew up among US presidents and movie stars. Today, he is an inspiring writer and accomplished actor. His memoirs, Symptoms of Withdrawal: A Memoir of Snapshots and Redemption, were on the New York Times bestseller list. Lawford’s early life was marked by the traumatic assassinations of his uncles John and Bobby Kennedy. By the time he reached his teens he had entered the growing drug scene of the 1970s, and his deep, long descent into near-fatal substance dependence that stretched into the early 1980s. Lawford believes it was during this time that he contracted hep C. In 2001, Lawford was diagnosed with hep C. Although he experienced no symptoms, it had already begun to damage his liver. Now, six years after successfully completing treatment with pegylated interferon and ribavirin, there is no detectable trace of hep C in his blood. Today, he is an advocate for hep C disease awareness and is dedicated to sharing his experience to help encourage testing for the virus and increase the number of people in treatment. • Abridged from www. yourhealthfirst.com (7 Dec 2008).

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news Recent results on new therapies USA — Protease inhibitors attracted considerable interest at the late-2008 American Association for the Study of Liver Diseases meeting. “The two closest for market are boceprevir and telaprevir,” Dr Arthur McCullough, president of the association said. The SPRINT-1 study with boceprevir almost doubled sustained virological response, which would be a significant advance if it holds up in phase III clinical trials. Investigators looking at the other drug, telaprevir, are focusing on shorter treatment durations, according to Dr Stefan Zeuzem, of JW Goethe University Hospital, Germany. Dr Zeuzem reported on the final results of the PROVE2 study, showing that the time it took for tests to show undetectable levels of hepatitis RNA is markedly shortened by the addition of telaprevir to the standard combination treatment. The sustained virological response of the telaprevir and ribavirin arms was 60% and 69%, respectively, compared with 46% for the control arm, Dr Zeuzem reported. • By Michael Smith. Abridged from www.medpagetoday. com See ED63, p34 for an overview of how drug trials are run. Ed

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Treatments race is on USA — The marathon race to bring the next hep C drug to the market is coming to a close. In mid-January, both Schering-Plough and Vertex Pharmaceuticals have announced that their phase III trials have finished enrolling patients. That means investors can pretty much guess when data from the trials should be available. The timetable for hep C trials is pretty clear. Schering’s Sprint2 trial testing boceprevir and Vertex’s Illuminate trial testing telaprevir have a maximum of 48 weeks of treatment and a 24-week follow up to see if the virus has been eradicated, so the subjects that just started treatment now should be done in about 17 months. Add a month or two to process the data, and investors should get results before December next year. Both companies are also testing the drug in people who have failed interferon/ribavirin combination treatment. Hepatitis C is clearly a large market — Pegintron and Pegasys combined for around $1.7 billion in sales through the first nine months of last year. The first company to hit the market with a new drug will have a clear advantage, but it doesn’t look like it’ll last for very long. In the drug world, there’s always someone on your tail. • By Brian Orelli. Abridged from www.fool.com

US kids get hep C treatment USA — The first treatment for hep C in children has been approved by the US Food and Drug Administration. Schering-Plough said that the FDA had approved sales of pegylated interferon combination therapy for children aged 3-17 with hep C. An estimated 130,000 American children are infected with hep C, with most of them acquiring it from their mother whilst in the womb. Many adults and even some children don’t know they are infected because hep C does not display any obvious symptoms for years. The trial results that led to the approval showed that of the children with the difficult-totreat strain, genotype 1, 55% cleared the virus. In children with more-treatment-friendly strains, 96% cleared the virus. • Associated Press. By Linda Johnson. Abridged from www.pharmacychoice.com (12 Dec 2008). Also see recent articles on kids and hep C: ED63, p52; ED61, p50; ED57, p44; ED51, p47. Ed

Fear of deportation makes many hide disease United Arab Emirates — Healthcare workers who are likely to have contracted HIV or hep B from hospital needles and scalpels are often not reporting the injuries for fear of losing their jobs. A survey of 1,420 nurses and doctors in Dubai and Sharjah revealed that one in five had been injured by sharp objects and that 55% of those injuries were from contaminated objects. However, under-reporting was very common among workers. “People are often scared of reporting these injuries because they could be socially excluded or isolated,” Dr Ana Jacob, Specialist Physician at Welcare Hospital in Dubai said. “Especially in the UAE, as if they are found with these diseases, they could lose their jobs,” she emphasised. The study has not been published but the findings were revealed at the December 2008 International Risk Management Conference. It is the first of its kind in the UAE and fills a gap in World Health Organization statistics. Two healthcare organisations were surveyed in Jacob’s report and had previously made employees pay for their own hep B vaccinations soon after joining the company. This meant that many had opted out and were not protected against the disease. However, after hospital management was notified of the survey, both organisations began to offer free vaccinations to new employees. • By Martin Croucher. Abridged from www. khaleejtimes.com (17 Dec 2008). This is an ongoing issue, also previously covered in EDs 63 & 61. Ed

news Doctors divided over hepatitis deportations United Arab Emirates — Health officials are divided over whether a person with an infectious liver disease should be deported under the UAE law. Some say that people with hep B deserve to remain and be treated, while others say deportation protects the population. The UAE made hep B a “deportable disease” from July 2008, requiring all expatriates seeking new employment and residence visas to be tested. Speaking to Gulf News after the launch of a hep B awareness campaign, officials of the Health Authority of Abu Dhabi disagreed about the necessity of the UAE immigration laws. Dr Mazen Taha, gastroenterology and hepatology consultant at Tawam Hospital in Al Ain, told Gulf News that encouraging people to test for the disease was important to prevent its spread and that the new law discouraged testing. “The law will drive the disease underground for fear of testing positive and losing their livelihoods. If people don’t get tested, the disease will spread,” he said. “There should be a change in immigration and health laws on different infectious grades. If they are not infectious, they should be allowed to work and stay in the country.” However, Dr Salem Awad Sabih, gastroenterology and hepatology consultant at Mafraq Hospital in Abu Dhabi, disagreed, saying it was too risky to allow hep B carriers to remain in the UAE. “How can [one] be sure their viral load is low [thus non-infectious]?” he asked. • By Nina Muslim, staff reporter. Abridged from www.gulfnews.com/nation/Health/10263889. html (1 Dec 2008). This is an ongoing issue, previously covered in EDs 63 & 61. Ed

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news 30-year tribulation of Irish anti-D women Ireland — The saga of the contamination with hep C of anti-D, a blood product given to expectant mothers to prevent them having blue babies (see below), is now 31-years-old. But it was only in recent weeks that the final chapter in the long-running campaign for the pursuit of justice was written, when the Irish Department of Public Prosecutions decided that former blood bank biochemist Dr Cecily Cunningham would not face a criminal trial. All the other main players have since died and nobody will be held accountable. For the recipients, however, the ordeal continues as they live with the ill effects of the virus. The contamination happened in 1977 and again in the early 1990s, but it only came to light in 1994. The blood bank tried to play it down but, of over 70,000 women tested, 1200 had either contracted the virus or were HCV antibody positive. It took a tribunal of inquiry in 1996 to establish that the blood bank had broken its own rules when taking plasma from donors — which resulted in contaminated plasma being collected. At least 42 of the women have subsequently died from various causes, including liver failure linked to hep C. Among them was Brigid McCole who died in 1996 while the Irish Government fought her compensation claim. A statutory compensation tribunal has been sitting since 1996 and so far it has paid out A$1980m. It also hears claims from people who contracted hep C through blood transfusions. Since 2002, it has also heard claims from people with haemophilia who contracted hep C and HIV through contaminated products. • Abridged from www.independent.ie (23 Dec 2008). Blue baby syndrome (or simply, blue baby) is a plain-English term used to describe newborns with medical conditions involving de-oxygenated haemoglobin. Ed

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Nokia avoids fault in discrimination case China — A Chinese court recently heard evidence in a case against Nokia in which a job applicant, Mr Li, claimed he was refused employment because he carried the hep B virus (HBV). Nokia has refused to accept that it was at fault in the case. Indeed, management went so far as to deny that their Human Resources officer (Miss Wei), who allegedly refused the plaintiff employment, had ever worked for Nokia. This, despite the fact that Miss Wei is reported to have told journalists, “Nokia doesn’t accept job applications from people with HBV.” Nokia says that after the lawsuit was filed in March 2007, it stopped testing for hep B as part of its pre-employment evaluation, and now offers its employees in China awareness training and voluntary vaccinations. China Labour Bulletin welcomes this development but notes with concern that, even after this stated policy change, a prospective employee claimed he was refused employment because he told the interviewer he had HBV. • Abridged from China Labour Bulletin www. clb.org.hk (15 Oct 2008). Post script: The Court has since ruled against Mr Li. The judgement was based on Mr Li’s inability to prove the authenticity of a tape recording of the conversation with Miss Wei, during which she allegedly stated that he was not given the job because of his HBV status. • Abridged from China Labour Bulletin www. clb.org.hk/en/node/100336

Japan initiates treatment subsidy scheme

news Canadian lawsuit over reuse of syringes

Japan — Thirteen hundred people have received a newly introduced government subsidy for hepatitis C interferon treatment, The Yomiuri Shimbun has learned.

Canada — A law firm has filed a class-action lawsuit against the Ottawa, Alberta and Saskatchewan governments over the reuse of syringes by health services in Western Canada.

The Japanese government aims to double the overall number of people who receive interferon treatment annually from 50,000 to 100,000.

The Winnipeg Regional Health Authority recently began testing patients after it was revealed a nurse at St. Boniface General Hospital reused a finger-stick blood-sampling device between May 2007 and October 2008.

Many patients found it difficult to afford treatment, which costs around A$1200 a month. The government decided to introduce a financial aid system intended to reduce medical expenses in the long term by reducing the number of people who might develop liver cancer or failure. According to hepatitis organisations, although the system is designed to alleviate financial burdens on patients who receive interferon treatment, some still find it too costly. Joji Takabatake, secretary-general of a national federation of hepatitis patient organisations, stressed the need to lower the amount of medical costs shouldered by hepatitis patients. But the health ministry attributes the unexpectedly low number of service recipients to a lack of publicity before the system was introduced. “We believe a lack of PR activities is the main reason [for the low number] because it was introduced at short notice,” a ministry official said. • Abridged from Daily Yomiuri (22 Oct 2008).

That news came after Saskatchewan announced last month it was conducting a province-wide investigation into the reported reuse of single-use syringes. Days before the Saskatchewan cases went public, the Alberta government revealed that up to 2700 dental and endoscopy patients might have been exposed to HIV and hepatitis through the reuse of syringes in IV lines. “This suggests the practice of reusing single-use syringes could be more widespread than anyone knows,” lawyer Tony Merchant of the Merchant Law Group which filed the class action, said. The lawsuit seeks compensation on three levels: for any blood-borne diseases contracted by the plaintiffs because of syringe reuse; for the testing patients will have to undergo to determine if they were infected; and for emotional distress. No figure was given for monetary compensation, but Merchant said an amount would arise when more plaintiffs were made aware of the case. • By Mike Barber, Canwest News Service (22 Nov 2008). Abridged from www.canada.com Post script: Of the 1400 people tested to date, only a small number have returned positive results and it is believed that they had contracted HIV or hepatitis through other transmission routes. Ed

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news UK national awareness campaign UK — The UK Department of Health is gearing up to launch a hep C public health campaign to improve detection and diagnosis among the 100,000 people in England who are thought to be unaware they have the infection. The campaign will get underway early in 2009, with radio and press advertising to remind the public of life experiences that could have exposed them to infection. GPs will be encouraged to support the campaign by offering information and testing to patients in “at-risk” groups. The campaign coincides with the 20th anniversary of the virus being identified and follows calls to improve the detection and diagnosis of hep C. In the lead-up to the campaign, a number of information resources are being made available for health professionals, including a quick reference guide for primary care workers and a new patient information leaflet. “It is important to make sure that healthcare professionals are aware of the transmission, diagnosis and treatment so that people at risk are identified at the earliest possible opportunity and can be treated effectively,” Steve Field of the Royal College of GPs, said. • Abridged from www. pharmiweb.com

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Depression Long wait for drugs ease new livers in fibromyalgia Iceland UK — Antidepressants appear to relieve symptoms of fibromyalgia, a debilitating and painful ailment, German researchers have reported. The condition, found in around 20% of people with chronic hep C, can cause severe pain and tenderness in muscles, ligaments and tendons. Shoulder and neck pain is common, however some people also have problems sleeping and suffer from anxiety and depression. The researchers analysed 18 previously published studies involving 1427 participants and found strong evidence that antidepressants led to improved symptoms and quality of life. Older antidepressants seemed to have a marked effect in easing pain, fatigue and sleep disturbances while new drugs such as Prozac were less effective for pain relief. While the analysis suggests antidepressants may help, the researchers said doctors should closely monitor people using them because there is a lack of evidence about their long-term impact. • By Michael Kahn and Tim Pearce, Reuters (13 Jan 2009). (Hauser, W. The Journal of the American Medical Association, 14 Jan 2009; vol 301: pp 198-209)

Iceland — Doctors from Iceland have requested that the Ministry of Health reconsider a regional agreement on organ transplants because of long waiting lists of transplant recipients in Iceland. Since 1993, Icelanders have donated organs to a joint Nordic organ bank and, in that period, Iceland has received fewer organs it has donated. Liver diseases are on the rise in many parts of the world, primarily because of hepatitis, obesity and an increase in alcohol consumption. Cirrhosis is still less common in Iceland than in neighbouring countries, but that seems likely to change. Cases of hep B and hep C are on the rise in Iceland, increasing considerably last year. Last year there were 95 cases of hep C in Iceland compared to 56 in 2006. At the same time, cases of hep B increased from 16 to 48. Excessive drinking is by far the most common cause of cirrhosis (50-70% of all cases) with hep C the second most common cause (8-12%). • Abridged from www. Icelandreview.com

Stock photo - image via Google Images

Combination oral antivirals trial Australia — Roche, InterMune and Pharmasset announced the start of an innovative clinical trial, run in Australia and New Zealand, investigating the combination of two oral antiviral molecules in the absence of interferon. The initial study — called INFORM-1 — will evaluate the safety and combined antiviral activity of R7227, a protease inhibitor; and R7128, a polymerase inhibitor, taken together for 14 days. This antiviral combination study represents an important first step in evaluating the therapeutic potential of an all-oral, interferon-free combination treatment for hep C. “We believe the development of an all oral treatment regimen may help attract many more people into therapy that are currently not on treatment,” Patrick Higgins, Executive Vice President of Marketing and Sales at Pharmasset, said. • Abridged from www. medicalnewstoday.com

news

Doctors demand money to fight hep B

New treatment for advanced liver cancer

Australia — Health groups have made a joint plea for federal funds to curb the spread of hep B, a virus that affects up to 160,000 Australians.

Australia — A milestone has been reached for Australians with advanced, inoperable liver cancer with the availability of Nexavar on the Pharmaceutical Benefits Scheme (PBS) from 1 February, 2009.

The Australasian Society for HIV Medicine, Cancer Council, the Gastroenterological Society of Australia and Hepatitis Australia warn more money is urgently needed to draw up a national strategy to deal with the disease. A specialist in the field, Professor Stephen Locarnini, said hep B affected tens of thousands of Australians and it was one of the leading causes of liver cancer. Unlike hep C and HIV/ AIDS, there is currently no government-endorsed national strategy or support for people living with the virus. This is simply not good enough and we are calling for a [national] strategy to be formed. Cancer Council NSW chief executive, Dr Andrew Penman, backed the call. ‘’Hep B is one of the leading causes of liver cancer and the longer we wait for the Commonwealth Government to take action, the more Australians we expose to the risk of liver cancer,’’ he said. • By Danielle Cronin. Abridged from Canberra Times (21 Oct 2008).

Nexavar is the first systemic treatment to be registered for advanced liver cancer and is also the first therapy shown to extend life, significantly improving overall survival by 44%. Director of the joint Austin Ludwig Oncology Unit in Melbourne, Prof Jonathan Cebon, believes the funding of Nexavar on the PBS is good news for patients with advanced liver cancer. “Nexavar represents a new approach in how we treat advanced liver cancer and an opportunity to provide advanced liver cancer patients who generally have a poor prognosis with more time with their loved ones,” said Prof Cebon. People with advanced liver cancer should discuss the most appropriate treatment options with their specialist. • Abridged from a Bayer Schering Pharma press release.

Also see p26 & p42. Ed

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news Liver cancer drug trial — a bitter pill Australia — One of Australia’s leading immunologists has spoken out against drug development practices after a pharmaceutical company axed trials of a potentially lifesaving cancer drug. Professor Chris Parish, who leads the cancer and vascular biology group at the Australian National University’s John Curtin School of Medical Research, spent 20 years developing the drug, PI-88. PI-88 prevents the growth of new blood vessels that supply a solid tumour and it blocks enzymes called heparanase to inhibit the spread of cancer throughout the body. The drug’s most promising results were for liver cancer and it was due for release in 2010. The experimental drug was at phase III of clinical trials — the last major hurdle before a drug is available to the public — when its sponsor, Progen Pharmaceuticals, announced in July 2008 that it was terminating the trials. The Australian-based drug company said a number of factors triggered the termination but analysts say the cash-rich company has not given any valid reason for dropping the trial. Professor Parish said he had heard about Progen Pharmaceuticals axing the trial from a friend who had read about it on the internet. “It was bloody awful. It was devastating actually,’’ he said. Professor Parish said it was unbelievably frustrating to try to take the drug further while Progen Pharmaceuticals owned the intellectual property rights on his work. “I think we need an alternative route for developing new drugs,’’ he said. • By Nyssa Skilton, medical and technology reporter. Abridged from The Canberra Times (15 Dec 2008).

Australians want less alcohol advertising Australia — More than eight million Australians want a reduction in alcohol advertising, with half saying alcohol has had a negative impact on their family, a new study has found. Roy Morgan Research conducted the study for the Salvation Army, which is calling on all Australians to consider their drinking habits and the impact drinking may have on their families. The study also revealed that two million people have experienced physical arguments or threats as a result of alcohol consumption in their family. Gerard Byrne, the coordinator of the Salvation Army’s substance use treatment program, said the organisation supported the idea of reducing alcohol advertising. “The whole issue has to go under the microscope,” Mr Byrne said in a statement. “Some advertising encourages people to think drinking equals social or sexual success. There needs to be clear warnings on all products.” Mr Byrne said the research showed more than one million people linked alcohol consumption with financial problems, and more than 2.6 million had had family relationship problems as a result of alcohol. “We are not surprised at the findings,” he said. “A large proportion of people who seek our help have been negatively impacted by alcohol abuse in some way.” The Salvation Army is calling for a “significant reduction” in the amount of alcohol advertising and a review of current advertising guidelines. It also wants the federal government to launch an awareness campaign about the effects of alcohol on Australian families. • AAP (20 Oct 2008). Abridged from www. news.com.au An interesting debate, given that hep C outcome is often worse for people who also drink alcohol (moderately to heavily). Ed

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Second chance for treatment in Australia Australia — As reported in our previous edition (ED63, p11), since 1 December 2008, pegylated combination therapy has been available for re-treating chronic hep C in people who have not responded to prior treatment or who have relapsed. Most importantly, the retreatment therapy is subsidised on the Pharmaceutical Benefits Scheme. Prior treatment could involve a single course of interferon alfa (in a pegylated or non-pegylated form), either combined with ribavirin therapy or alone (as monotherapy). Pegatron combination therapy is given as a 48-week standard course. People undergoing retreatment with Pegatron are reviewed at 12 weeks and, if their hep C virus levels are undetectable, they may complete the full course of 48 weeks. • Abridged from a Schering-Plough press release (1 Dec 2008).

news

Q&A:

Whatever happened to jet injectors? Using an air gun, also called a jet injector, is a fast way to deliver vaccinations. The device uses high pressure to force a vaccine or other medication through the skin. Their speed made jet injectors very efficient, so many people could be vaccinated quickly, and they were often used in the military. In some cases, however, jet injectors could bring blood or other body fluids to the surface of the skin while the vaccine was being administered. Those fluids could contaminate the injector, creating the possibility that viruses could be transmitted. Of particular concern were viruses transmitted by blood, such as HIV, hep B and hep C. No widespread outbreaks of these diseases were caused by jet injectors but the risk of blood and body fluid contamination of the equipment made them no longer acceptable for vaccinations. • Abridged from http://seattlepi.nwsource.com

Q&A is a new feature. Please write, email,

text or phone in with your question; see our contact details on p3. Ed

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opinion

Five thoughts from the sixth Australa

i my name is Jennie and I was the lucky winner of the Hepatitis C Council of NSW conference scholarship to Brisbane. The sun was shining, the sky was blue and I was stuck inside learning about amazing ideas and results of various studies. My head was so full by the end of three days that you must excuse me if it all comes out a bit jumbled. First thought Fantastic news. Pegatron has been given PBS approval by the government allowing people a second turn at treatment! This comes into effect on 1 December 2008. This is fantastic news for everyone. I was also told that it will be at least three or five years before the triple combo comes in. This gives people hope. Not only for being able to have a second try but if you want, and are able, you could wait for the triple. And you may well beat this bugger of a disease. Second thought We need a “survivorship” of treatment program. We see doctors and nurses constantly throughout treatment, then at the end, there’s nothing! Here we are expecting to feel better straight away and, oh my god, we don’t! I know when I finished, I thought that in a couple of weeks I’d be fine. It didn’t quite work out like that. Even a year later I still suffer some side effects. We need to be warned the ‘chemo’ takes a while to wear off, and the same

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with the Ribavirin. Third thought Bringing in treatment to pharmacotherapy clinics. It seems like a good idea, doesn’t it? People turn up all the time to get their medication. They’re going there anyway. But hold on. How many people feel that their dosing doctors genuinely care about them? And will there be conflict between personal information needed for the treatment that one would not usually tell their doctor? Are clients going to be pressured into having treatments? Is it going to cost more? After all, there are a lot of private clinics. In my experience, clinics do not seem to cope with general problems. What’s going to happen when someone comes in with ‘Ribarage’? What about the behaviour contracts that clients sign? Doctors are still reluctant to refer clients to the treatment if they are still using illicit drugs although treating drug users has proved successful with good client selection. Before this happens I would like to see a lot of education and training for staff. And questions asked like are there going to be psychology staff available? Are the doctors going to be allowed to prescribe sleeping pills for brief periods of time? As well as a great shift towards a client based treatment, a book of facts will be offered. Great, but of course you won’t get real sense of the possible nasty side effects! How about a series of peer based discussions? Truth in action! No, I’m not scare-mongering. I just think too many people go in blind. Under-informed as I was, I did research things. Obviously, not enough! This seems to me like an opportunity to rush in and offer something to clients who are already underserviced by their doctors (due to numbers) and who could be totally unprepared for treatment.

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opinion

Fifth thought Fourth thought This one is a little whacky and outside the box, but bear with me. I went to hear Dr Rose Ffrench, and the way I understood it was if your body naturally responds to a new HCV infection by CD4-CD8 (which naturally produces interferon) your body should clear. If your body responds with a different type of response, called LN2, you will not clear HCV. If this is true can we make a ‘day after shot’ medication? Or even better, is there a way to make CD4-CD8 naturally respond? Especially when first starting treatment. Another fact I found interesting was that people who have treatment for 24 weeks were found, six-months after treatment finished, to still have high readings of interferon. I wonder how long this remains high? And can it have anything to do with complaints of continuing side effects? Also, would this not help drug users — who get reinfeced during this post-treatment period of time — avoid chronic hep C again?

Finally, and very interesting to me, was the health system itself in Australia. Here we have a system of self responsibility. It’s everyone’s job to look after themselves. This is also a provider-led system. This in itself sounds innocent enough. But I think of the implications. It then becomes your fault if you get sick! The social implications of this way of thinking then become apparent. People become ‘deserving’ or ‘non-deserving’. This creates marginalisation of some groups. The emphasis shifts to the behaviour rather than the disease or problem that is the underlying factor. People who inject drugs need to become accepted as part of society. Not every user looks like a classic junkie seen on television. Why do we have to sneak into NSPs? Because we run the risk of being seen by friends, or even worse being hassled by police. Or even hassled by the police while trying to dispose of equipment (used) safely and properly. The stigma is real and unfortunately has crossed over to the ‘caring’ community. Think about IDU, PLWHC, HCC, BBV, etc. These words themselves create a whole new sub-culture of their own. We are seen as someone ‘needing’ help, instead of acceptance of a chosen lifestyle. What we would like is to be given information in a respectful manner and to be treated as intelligent human beings with courtesy and politeness. So, with all that off my head, I hope you enjoyed, learnt or were given something to think about. • Love and luck from your roving reporter, Jennie, NSW. Images this page via www.images.google.com

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Alcohol use and hepatitis

Magdalena Harris, speaking at the 6th Australasian Viral Hepatitis Conference reports on her research w

n this paper, Safe to drink? Alcohol use and hepatitis C, I will briefly outline the consumption practices and meanings of alcohol use for 40 research participants living with hepatitis C. Despite the importance of alcohol — in society as a legal intoxicant, and for people with hepatitis C — as a risk factor in the progression of their disease, very little social research has addressed the practices and meaning-making processes around alcohol consumption for people living with the virus. The vast majority of literature on alcohol and hepatitis C is clinical in nature, with a significant focus on ‘heavy drinkers’, or people who consume more than three standard drinks, per day. Clinical trials have consistently found that heavy alcohol consumption significantly increases the progression of fibrosis, cirrhosis and end stage liver disease, with researchers concluding that alcohol is the most important controllable factor in hepatitis C progression. Some researchers perceive and critique a tendency within the medical profession to provide [uncertain or confusing] messages about alcohol consumption. However, a reason why abstinence from alcohol may not be universally promoted is that there is inconclusive clinical evidence regarding whether light or moderate drinking is harmful for people living with hepatitis C. Method This paper draws on a recent qualitative study of the experiences of 40 people living with hepatitis C (20 in Auckland, New Zealand, and 20 in Sydney, Australia). Fifteen people were abstinent and were members of Narcotics Anonymous (NA) — which requires abstinence from all mood altering drugs. For these people, ceasing alcohol had less to do with hepatitis C than with the management of their prior drug and/or alcohol dependence. Nine other people were abstinent but did not belong to NA. Nine others were occasional or light drinkers and seven people were regular heavy drinkers.

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Abstinence as ‘the right thing to do’ Despite a lack of clinical evidence that light or occasional drinking is harmful for people with hepatitis C, participants often spoke of abstaining from alcohol as “the right thing to do”. This belief could, for some, manifest in guilt and self-blame when they had the occasional drink. For example Claire said: I love beer, and so I’d have one beer and that was it. And I said to the specialist, “Is that gonna make a difference?” He said, “If you can stop at one, it won’t.” But I still felt guilty having that one, and really bad. (Claire, 32)

Being known in one’s social circles as a drinker, coupled with a desire to ‘do the right thing’, created a dilemma for participants who did not wish to disclose their condition. Claire’s experience of feeling the need to justify her abstinence was common: They were saying, “Why aren’t you drinking?” “Are you pregnant?” “No! I’m not pregnant, leave me alone. I’m on a detox diet. Just go away!” (Claire, 32)

The ubiquitous nature of alcohol consumption in many social settings can cause non-drinkers to feel self-conscious and alienated from the growing intoxication of their companions. This, coupled with the demands to justify their abstinence, caused some participants to stop attending social gatherings. As Rose said, “It was hard going out because I didn’t drink, so I didn’t go out.” Medical messages Participants described receiving diverse messages from health care workers regarding their consumption of alcohol. Some were advised to reduce or cease use, whilst others were told their alcohol consumption was nothing to worry about. Rebecca, a daily drinker, was given the impression that it was fine to drink, even while she was on interferon and ribavirin treatment. She said:

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s C: taking a closer look

which takes a deeper look at alcohol and hepatitis C.

Research has shown that clinical markers such as ALT levels do not necessarily provide an accurate indication of either liver damage or symptom severity. Interestingly, however, normal liver function counts were often cited by high alcohol consuming participants as a reason why they could continue drinking. Heavy drinkers Seven participants described current heavy alcohol consumption, either on a daily basis or in the form of binges. All had been advised to cut down on their alcohol use, and most had done so to varying degrees, whilst remaining heavy drinkers. As Alexis said:

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I used to drink a bottle of scotch every three days. My bottle of scotch now lasts about a week. I think I am going pretty good… And I think okay I should stop but I can’t stop. It would be good if I even could [stop] one day a week… But my liver functions aren’t too bad. (Alexis, 47)

Whenever I mentioned drinking to doctors, they just kind of looked the other way… They just didn’t think it was a problem. It was like, “What are you worried about?” (Rebecca, 39)

Medical advice regarding alcohol consumption appeared, within this limited study, to be partially dependant on liver function results. As Henry said: My [ALT] readings were, oh nearly 200... [Then the specialist] told me to stay off the grog straight for six months and I nearly fell off the chair! (Henry, 62)

Alexis’s statement shows an interesting tension between wanting to adhere to medical recommendations to stop drinking, yet using biomedical markers such as liver function levels to partially justify her continued alcohol consumption. Alexis also said she “can’t stop” drinking. This does not mean that she did not care about her health, but reflects the difficulty that people with alcohol dependencies who are undergoing treatment have in negotiating medical and social expectations to reduce alcohol use. When I interviewed Jack he was practically housebound due to the symptoms of advanced liver cirrhosis and drank two to four beers a night. Jack had been told that his alcohol consumption would kill him, but continued to drink, stating that this was one of the few pleasures he had left in his life: I could do with a few more beers a night. The way I look at it, is that I am going to die anyway, I figure I am going to die in the next five years so I am quite philosophical about the whole thing. If you are going to die you are going to die, you know… People die of heart attacks in their 40s, so [I could live to] 52, 57, maybe 60. (Jack, 52)

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feature Rhodes and Cusick (2002) refer to attitudes such as Jack’s as indicative of a “postmodern fatalism”, in that the future is conceived as only partially under human control and the main aim is to enjoy the present. Jack’s attitude to alcohol and apparent acceptance of death can also be seen as an expression of agency [taking action] in constrained circumstances. In resisting his doctor’s advice to stop drinking, Jack has made a considered prioritisation of pleasure, challenging a biomedical focus on avoiding death at all costs.

Whilst medical research and health promotion materials invariably frame alcohol use in terms of risk, the stories presented here suggest that it is not just a risk. A focus purely on the risks and harms of drinking tends to remove alcohol use from its social meaning and context, obscuring its role as a social connector and conduit “of pleasure and desire”. This can also act to position people living with hepatitis C who continue to drink as irrational, obscuring the agency [actions] that individuals exhibit regarding their use.

Pleasure

Participants described receiving diverse messages regarding alcohol consumption from their medical practitioners and were generally unsure about if, or at what levels, it was safe to drink. This confusion is not entirely surprising as, while clinical evidence shows that heavy alcohol use speeds hepatitis C progression, there are no consistent findings regarding the risks of occasional consumption. Studies have shown, however, that alcohol interacts with interferon efficacy, which a number of participants who had undergone hepatitis C treatment were not told.

Many of the participants in this study had worked hard to reduce or eliminate the use of other drugs that may have been more problematic than alcohol in their lives. For Bianca, an ex-heroin user, a glass of wine was a source of pleasure and she alternately resented having to monitor her alcohol intake and was plagued by guilt when she felt she had had one too many: I have a huge problem with it [abstinence], huge, because I love a glass of wine... so every glass I have I count. It takes the pleasure out of it… And after where I have come from it is sort of like nothing, compared to my history. (Bianca, 52) A number of research participants mentioned the use of cannabis as a less harmful alternative to alcohol. Cannabis is problematic due to its illegality and may not be an option for those who have overcome a drug dependency. However, cannabis may fulfil a similar pleasurable role to alcohol and has also been found to aid interferon tolerability and adherence. Some specialists recognise this and advise their patients accordingly. As Isaac said: My doctor, probably in confidence, said “smoke a joint occasionally”… And so I did. And immediately I got this great relief. All my body pain and everything, it relieved me. (Isaac, 45) Conclusion Central to understanding why it is that people desist from smoking or excessive drinking, or continue to participate in these activities, is the symbolic nature of alcohol and tobacco as commodities and conduits of pleasure and desire. (Lupton, 1995, 150)

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There appears to be a need for practitioners to provide non-judgmental and sound advice about the known effects of light and heavy alcohol consumption on hepatitis C progression and interferon efficacy. In this way people living with hepatitis C can make informed decisions regarding the risks and benefits of alcohol in their lives. For some, this may involve the decision to drink. In understanding this decision it is useful to recognise that alcohol use may be an expression of agency [personal choice of action] and that it can be a source of pleasure as well as a way to alleviate pain. Negative judgements, medical and social, can cause drinkers with hepatitis C to hide their drinking habits, which can cause isolation and limit their opportunities for receiving appropriate medical care. If the reasons for drinking and the meanings that alcohol has for people with hepatitis C are explored, then the possibilities open up for non-judgmental care and support as well as an open exploration of alternatives to alcohol use. • Safe to drink? Alcohol use and hepatitis C. Magdalena Harris is a PhD Candidate at the National Centre in HIV Social Research, Sydney. Fully referenced article available by contacting m.harris@student.unsw.edu.au

my story

The Miner’s story: shiftwork and hep C treatment can mix

think I have been living with hep C for up to 25 years, and have only just turned 45 recently. I am heavily tattooed and was a rabid speed injector who didn’t take enough precautions, so it came from one of them, probably the speed. I have also had a poor diet most of my life and have been a heavy drinker, but despite all this, I was rarely sick except for problems I have caused to myself. Then I started my six-months’ hep C treatment and discovered a whole new world of feeling sick. But, I’m getting ahead of myself. The reason that I am writing this is not to tell you how sick I was. It’s because through this magazine I have learned how many people don’t want treatment because they are worried about the side effects. If I can do it in my line of work and get through it, despite being hit with about every side effect imaginable, then there is a fair chance all you out there can do it too.

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That’s why I’m writing this story. I’m a miner and I work one week of 84 hours in day shift, then one week of 84 hours in night shift. This time is spent away from my family with no support base.

I live in a room the size of a cell, not to mention regular temperatures of around 50 degrees in the sun, with dust and flies everywhere. After my day and night shifts, I get six days at home to do the dad-husband thing. It’s a big workload by any standards, but I’m at the five-months point now and expecting a cure. In my first month I lost 12 kilograms, had the flu regularly, and for the first time in my life, had bronchitis, throat, ear and gum infections. I had a rapid response to the combination therapy — I had no trace of the virus in my blood despite initially having had a high viral load. In the ensuing months I had up just about every symptom in the book but, thankfully, I didn’t have to put up with all of them at the same time. I did have good-to-average days as well. I won’t bore you or scare you with my symptoms. I just want you to know that, even with my workload, I was able to get through it and in one more month this will just be a bad memory. I hope to be a much healthier dad and grandfather, because my children and grandchildren are the people I have done this for. •

The Miner, Northern Territory

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my story

Dave’s story: my live I

“

had a feeling that something was wrong for a long time,” 56-year-old David Clark says, as he lies recovering at a friend’s home from a liver transplant he received in June, 2008. He pauses for a long moment during which he is time-travelling back to 1971. “The best explanation was the injections I was given in the army, before I went to Vietnam. We walked in a line down a hallway, and various medics shot us in the arm with air guns and they splashed blood back on us. Everybody had a bleeding arm.” Seeing Clark little more than two weeks after surgery, this normally robust man looked pale, gaunt, and weak. He smiled and his eyes seemed clear. His demeanour was one of optimism. Here is David’s story in his own words. While I was in the Central Highlands several months later, I had an episode — an unexplained illness. They first thought it was malaria. It was several years after that that I again experienced those symptoms again. There was weakness, but not jaundice and they talked about something called “non-A non-B” hepatitis, which meant nothing to me. Being a cynical Vietnam veteran, I didn’t really believe anybody about anything. Then about three-and-a-half years ago I had some blood numbers done. They came back and I was told, ‘We really don’t like these numbers.’ They did more tests and confirmed a diagnosis of hepatitis C. Over the years it had caused cirrhosis. I went through interferon and was monitored pretty closely. I had cleared the virus pretty much, but it came back. I hadn’t eliminated the viral infection completely. The doctor said, ‘Well, check out the internet and see what kinds of treatment are available. I had tests done and wasn’t real happy with my long-term outlook. My wife Diane was really my advocate here. She went head-to-head with the insurance company and finally got me a consultation with Dr Rose, a nationally recognised top guy in liver transplants.

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He looked at my images, and there were two tumours in my liver, one really small, the other large. He pointed us to the University of California San Diego Liver Transplant Clinic, and they’ve been handling it ever since. Three surgical procedures were used, including a laparoscopic kind of insertion guided by imaging. They generate a microwave field around the tumours and, in effect, cut them out. After two operations, they had to go back in and make sure they had everything. Thanks to Dr Rose’s good care, that cleared the decks for me. I was on the waiting list for a liver transplant but they had to be sure the tumours hadn’t been spreading through my body. If that had been the case, it would have been all over. I got through that period okay. It was a matter of waiting. I went on another course of interferon for nine months — a weekly thing, injections and taking pills several times a day. It was very demanding. During this time, I was going to various support groups for people with hepatitis and who were pre-transplant. I also decided I should go to counselling, and so I did at my local veterans’ centre. There, I discovered I had all the key symptoms of post-traumatic stress disorder. Being on the waiting list, it was enormously frustrating trying to keep my spirits up and stay positive. It went on so long. You could get a phone call at any time during the day or night, and you’d have to rush down to the hospital and be available to receive a transplant. These are what they call “stand-by situations”, when you are not number one on the list. You have to be there, in case something goes wrong with the primary person, who might not be able to arrive on time or if there are other problems. It can happen at any time, without warning. I decided to go away on a long weekend, to Seattle to see one of my oldest and best friends [science fiction author Greg Bear], and they said that was fine. Anyway, about midnight, while I was getting ready to fall asleep, I got the phone call and was instantly in a state of shock. I couldn’t believe it. Sure enough, it was a surgeon calling me to ask if I could be in San Diego at six in the morning?

my story

er donor’s presence It was a lot to have dropped in my lap in the middle of the night, and we had to make snap decisions there and then. There were a couple of commuter flights leaving early in the morning, so I said, Yeah, I’ll be there. We had to shower and repack our bags, and my friend’s daughter drove us to the airport. We caught a little tailwind, and so we were alright. I had told them that I probably could not be there exactly at six or even six-thirty and then asked what time they really, absolutely had to have me there. They said, if we can have you on the operating table by nine-thirty, then we’re good to go. Arriving just before nine in San Diego, I rushed out in front and grabbed the first cab in line and said, ‘Take me to UCSD Hospital in Hillcrest.’ The strange thing about this cab, though, was when I got in, I saw this beautiful statue of the Egyptian god Anubis on top of the fare box. Black-lacquered and gold-painted trim atop of the meter box, and I was nonplussed because Anubis is the carrier of the soul on its journey through the underworld after death. And by the way, this was happening on Friday, 13 June. But yes, I got to UCSD and reported to the prep area, then was taken to a large room with a number of beds and given a hospital gown to change into. After this costume change, I sat on the bed and I reached this very calm space, said a brief prayer, and just put myself in the hands of God. I had to surrender all and any control.

To be continued... • By John Brizzolara. Abridged from The San Diego Reader (12 Nov 2008). Part two of David’s story follows in the next edition of The Hep C Review. Ed

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Diane showed up shortly after that. They wheeled me out on the bed and prepared me for surgery. The chief anaesthetist wanted to be involved in this, but he was on another operation so there was a bit of delay. About that time, I could no longer recall anything because of the medication they give you which knocks you out.”

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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.

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 have also drawn 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 â&#x20AC;&#x153;social determinants of healthâ&#x20AC;?.

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

4. 5. 6. 7. 8. 9. 10.

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. Health policy was once thought to be about little more than the provision and funding of medical care; the social determinants of health were discussed only among academics. As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we also need to feel valued

Working conditions Stress in the workplace increases the risk of disease. People who have more control over their work have better health.

What is known In general, having a job is better for your health than having no job. But the social organisation of work, management styles and social relationships in the workplace all matter for health. Evidence shows that stress at work plays an important role in contributing to the large social status differences in health and premature death. Several European workplace studies show that health suffers when people have little opportunity to use their skills and low decisionmaking authority. Having little control over your work is particularly strongly related to an increased risk of lower back pain and cardiovascular disease. These risks have been found to be independent

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of the psychological characteristics of the people studied. In short, they seem to be related to the work environment. Studies have also examined the role of work demands. Some show an interaction between demands and control. Jobs with both high demand and low control carry special risk. Some evidence indicates that social support in the workplace may be protective. Further, receiving inadequate rewards for the effort put into work has been found to be associated with increased cardiovascular risk. Rewards can take the form of money, status or self-esteem. Current changes in the labour market may change the opportunity structure, and make it harder for people to get appropriate rewards. These results show that the psychosocial environment at work is an important determinant of health and contributor to the social gradient in ill health.

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ealth: working conditions 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.

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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

Policy implications • There is no trade-off between health and productivity at work. A virtuous circle can be established: improved conditions of work will lead to a healthier work force, which will lead to improved productivity, and hence to the opportunity to create an even healthier, more productive workplace. • Appropriate involvement in decision-making is likely to benefit employees at all levels of an organisation. Mechanisms should therefore be developed to allow people to influence the design and improvement of their work environment, thus enabling employees to have more control, greater variety and more opportunities for development at work.

• Good management involves ensuring appropriate rewards — in terms of money, status and self-esteem — for all employees. • To reduce the burden of musculoskeletal disorders, workplaces must be ergonomically appropriate. • As well as requiring an effective infrastructure with legal controls and powers of inspection, workplace health protection should also include workplace health services with people trained in the early detection of mental health problems and appropriate interventions. In the next edition of The Hep C Review, we will cover unemployment. • 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 The Hep C Review

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Getting the most from y healthcare system For people with long-term chronic conditions such as hep C, a lot more can be gained from doctors and the healthcare system than most people realise, writes Bianca Nogrady.

he Australian health care system, while being one of the best in the world, can still be something of a mystery to most of its customers. We visit our GP when we’re feeling sick, maybe get a test or two, perhaps a prescription, and a few random Medicare item numbers later, we’re on our way. This simple scenario might be fine for most people suffering the typical assortment of ailments that knock us around once in a while. In reality, however, it represents just the tip of the iceberg of what the health care system has to offer. For people with more long-term chronic conditions such as hep C, a lot more is needed, and a lot more can be gained, from a doctor, a consultation, and the healthcare system in general. The Australian Better Healthcare Initiative (ABHI) — a joint venture of federal, state and territory governments launched in July 2006 — is one attempt to better acquaint Australians with the full range of services their health care system can provide them, both in sickness and in health. One of the ABHI program’s five priority areas for action is “encouraging active patient self management of chronic conditions”. According to Mikol Furneaux, Program Development Officer at the South Eastern Sydney Division of General Practice, the program is being implemented in different ways across Australia. The aim is to help people with chronic and complex health problems to better manage their conditions in the community setting, rather than having multiple hospital admissions. “A lot of services are quite fragmented,” Furneaux says. “It’s a bit of a maze for a person to try and navigate community-based health services to get appropriate levels of care.” One solution to this problem is a GP management plan, which involves a patient and their GP working together to develop a treatment and health management

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plan that can cover all aspects of a patient’s health, including dental care, dietary management, and help with drug and alcohol issues. The advantage of using this Medicare-funded service is that it encourages a patient and their GP to work together in a more proactive fashion to keep their health on track, rather than simply reacting when something goes wrong. It also helps put patients in touch with the health professionals they need to see, rather than leaving them to work it out for themselves. “The GP management plan is about trying to use all relevant health services, coordinate them and initiate contact from the patient,” Furneaux says. So, if someone is having trouble coping with their diagnosis, or life has just thrown them a few too many curve balls and they need some psychological support, for example, the GP can help organise for them to see a psychologist to get the help they need. Or perhaps the patient isn’t eating as well as they should be, and needs some dietary advice, or is struggling with an alcohol or other drug problem. To complement the GP management plan, the GP can also initiate a collaborative team care arrangement with other health providers. Having access to drug and alcohol treatment services is particularly important for patients with hep C, according to Professor Greg Dore, head of the Viral Hepatitis Clinical Research Program at the National Centre in HIV Epidemiology and Clinical Research. “Particularly on the alcohol side, this has dual implications in terms of a high risk of disease progression if there is heavy alcohol use, plus reduced treatment outcomes,” Prof Dore says. “This may be partly to do with the fact that people with alcohol dependency problems may be less likely to stick with treatment, but there may also be an interaction between alcohol and the hep C virus that also affects treatment.”

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your

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Another area of health that has particular relevance to people with hep C is diabetes, as people with hep C seem to be at greater risk of developing insulin resistance — when the body doesn’t respond to insulin as well as it should — and type 2 diabetes, especially if they are already overweight or obese. However, there are a number of Medicare-funded services that patients with hep C can access to help them avoid developing diabetes and its associated complications. These services include group sessions with a diabetes educator, exercise physiologist or dietitian. Dental care is also important. While Professor Dore says there isn’t a direct link between the hep C virus and poor dental health, people with the disease often do have dental problems, and experts have previously highlighted hep C patients as a group that would benefit from closer attention to their dental health. Medicare has a specific set of benefits relating to dental care for people with chronic disease conditions such as hep C, covering a large range of dental services from simple check-ups to more complicated procedures. But sometimes it doesn’t need to be your teeth or your liver that prompts a visit to the doctor. As the aphorism goes, “an ounce of prevention is worth a pound of cure”, and, particularly past a certain age, prevention becomes a lot more important. This is the reasoning behind the 45-year-old health check service, for patients aged 45-49 who are at risk of developing a chronic disease, such as people with hep C. The health check is comprehensive, covering diet, smoking, physical

activity, alcohol consumption, mental health and bone health, as well as measuring cholesterol levels, blood pressure and blood glucose levels. “Ultimately, the goal of these sorts of initiatives is to nip any potential health complications in the bud,” Furneaux says. “One of the things about this initiative is to try and keep people out of hospital by keeping them healthy, and not waiting until they get to the stage where they need to be admitted to hospital,” he says. And as someone living with hep C, Furneaux appreciates how much difference it could make to quality of life. “I wish I’d been more aware of these community-based health services when I went for treatment.” Professor Dore says the ultimate aim of chronic hep C management is to prevent advanced liver disease complications. “We have to take a medium-to-long view,” Professor Dore says. “If we can enhance treatment uptake and responsiveness, that should reduce the number of people with cirrhosis and complications.” For the individual patient, it means there are plenty of ways the health care system can help you not only stay on top of your disease, but stay in good health for the long term. For more information about how to best use these, talk to your GP or local health centre. • Bianca Nogrady is a health and medical writer: www.biancanogrady.com/ NSW Hep C Helpline — 9332 1599 (Sydney) or 1800 803 990 (NSW regional). National Hepatitis Hotline — 1300 HEP ABC (1300 437 222).

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Hep B falling under

Australia needs to wake up to its complacency on hepatitis B, experts believe. Adam Cresswell reports

ohn Smith ought to have died 16 years ago, when the transplanted liver he had received the previous year was attacked by the hepatitis B virus circulating in his system.

His original liver had become riddled with cirrhosis as a result of the virus, which he now thinks he had unknowingly been carrying for decades. Now the same thing was happening to the replacement organ. Under normal practice at that time, he would have been refused further transplants on the grounds that donor organs were too precious to be thrown away on someone whose condition meant it would almost certainly be quickly destroyed. Luckily for Smith, now 73, experimental new antiviral drugs were then becoming available. In a world-first procedure, he was given his second liver transplant, and over the following months was dosed with drugs designed to keep replication of the virus in check and to give his transplanted liver time to stabilise. It worked. Smith pulled through. His besieged immune system, relieved of some of the pressure by the antiviral drugs, later recovered sufficiently to start making its own antibodies against the virus. Although hepatitis B cannot be eradicated from the body, he now has the infection well under control and depends on drugs for continued good health much less than was previously the case. Smith had only found out in 1987 that he was infected, something he thinks must have happened during an army vaccination campaign in the 1950s in which needles were not changed between different soldiers. The discovery came about by chance after he went to see his GP to have his ears syringed. An unusual heart rhythm led to a referral to a specialist, who in turn noticed a yellowing of the whites of his eyes — a telltale sign of jaundice. “It’s a horrible thing to go through,” says Smith, from Sydney’s western suburbs. “I think it should

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be taken very seriously — you wouldn’t want anyone else to go through it.” Unfortunately, infectious disease experts are warning that too few Australians are taking the threat of hepatitis B as seriously as John Smith thinks we should. Two recent reports paint a grim picture of a largely unsung hepatitis B epidemic in Australia, which already encompasses a population of 160,000 infected Australians, and 6000 new cases across the country each year. Despite its negligible public profile, hepatitis B is a significant health problem. Unlike the better-known hepatitis C, hepatitis B cannot be eradicated from the body, but merely kept in check. For the last ten years there has been a clutch of antiviral drugs that help to do this. But left untreated, 25% of people infected with hep B will develop cirrhosis, and 5-10% will develop liver cancer. Higher risks attach to those who contract hepatitis B as babies, 95% of whom will develop chronic hepatitis — compared to just 5% of people exposed in later life, as was Smith. Stephen Locarnini, director of the WHO Collaborating Centre for Virus Reference and Research at the Victorian Infectious Diseases Reference Laboratory in Melbourne, says recent estimates suggest the pool of hep B-infected Australians could be over 200,000 and growing. Whatever the exact number, he says it exposes the fact that Australia’s main strategy for holding back the disease is failed and broken. “Over the years we have felt we could control hepatitis B through vaccination, and that most of the cases of hep B that we would see in our lifetimes could be pretty well managed. But over the last ten years numbers have been increasing dramatically.” A safe and effective vaccine became available in 1982, and routine vaccination of children was introduced in Australia in 2000.

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our radar

on this serious threat to our community.

“Although Australia is a low-prevalence country, because of migration (from countries where hepatitis B is common) our numbers have gone up.”

Australia were infected at birth or in childhood. Nor does it encourage parents to think their child may be vulnerable to hepatitis B if they have the virus themselves.

This, in Locarnini’s view, holds the key to hepatitis B’s low profile, and the low priority it gets on the national agenda. Tackling the disease inevitably involves acknowledging people from particular countries, predominantly in the AsiaPacific region — and bureaucrats and community leaders see that as a potential Pandora’s Box of stigma that they would rather leave firmly closed.

The needs assessment document, released at last November’s Australasian Viral Hepatitis Conference in Brisbane, also cites evidence that many people with hepatitis B were offered little support or information to help them understand the virus or the implications of having it. Access to treatment is also limited in some circumstances, particularly for Indigenous people.

“We have spent the last decade thinking the situation was under control, when in fact it wasn’t,” says Locarnini, who is also professor of virology at Monash University. “That’s what we have had a panic attack about — that we have missed the mark. We started (examining the issue) a year ago, and now we have this national needs assessment, and we are doing an economic impact report. We’re calling for a funded national strategy (to tackle the problem).” Education and awareness programs should be part of the strategy, Locarnini says. Part of the issue is that the current poor understanding of hepatitis B is not exactly helping to reduce its spread; it is often portrayed even by doctors as a virus spread through sex and sharing needles — which, while true, does not explain the fact that most people with chronic hepatitis B in

The Cancer Council NSW has backed the call for more to be done about hepatitis B, saying the “longer we wait for the government to take action, the more Australians we expose to the risk of liver cancer”. “Many people’s health is at stake here and the government must step up to take urgent action,” Cancer Council NSW CEO Andrew Penman said. • Adam Cresswell is a health writer with The Australian. Abridged from The Australian (25 Oct 2008) via www.dailydose.net Amongst HBV notifications some people are over-represented: people from SE Asia, China and the Pacific region; Aboriginal & Torres Strait Islander people; people who have been in custody; men who have sex with men; and people who inject drugs. See p42 for an overview of hepatitis B. Ed The Hep C Review

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opinion

Ending drug proh

Most Americans agreed that alcohol suppression was worse than alcohol consumption. Writing for The looks at current US illicit drug policy from the perspective of 1930s alcohol prohibition.

e recently saw the 75th anniversary of that blessed day in 1933 when Utah became the 36th and deciding state to ratify the 21st amendment, thereby repealing the 18th amendment. This ended the nation’s disastrous experiment with alcohol prohibition. It’s already shaping up as a day of celebration, with parties planned, bars prepping for recessiondefying rounds of drinks, and newspapers set to publish cocktail recipes concocted especially for the day. But let’s hope it also serves as a day of reflection. We should consider why our forebears rejoiced at the re-legalisation of a powerful drug long associated with bountiful pleasure and pain, and consider too the lessons for our time. The Americans who voted in 1933 to repeal prohibition differed greatly in their reasons for overturning the system. But almost all agreed that the evils of failed suppression far outweighed the evils of alcohol consumption. The change from just 15 years earlier, when most Americans saw alcohol as the root of the problem and voted to ban it, was dramatic. Prohibition’s failure to create an Alcohol Free Society sank in quickly. Booze flowed as readily as before, but now it was illicit, filling criminal coffers at taxpayer expense. Some opponents of prohibition pointed to increasing crime, violence and corruption. Others were troubled by the labelling of tens of millions of Americans as criminals, overflowing prisons, and the consequent broadening of disrespect for the law. Americans were disquieted by dangerous expansions of federal police powers, encroachments on individual liberties, increasing government expenditure devoted to enforcing the prohibition laws, and the billions in forgone tax revenues. And still others were disturbed by the spectre of so many citizens blinded, paralysed and killed by poisonous moonshine and industrial alcohol.

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Supporters of prohibition blamed the consumers, and some went so far as to argue that those who violated the laws deserved whatever ills befell them. But by 1933, most Americans blamed prohibition itself. When repeal came, it was not just with the support of those with a taste for alcohol, but also those who disliked and even hated it but could no longer ignore the dreadful consequences of a failed prohibition. They saw what most Americans still fail to see today: that a failed drug prohibition can cause greater harm than the drug it was intended to banish. Consider the consequences of drug prohibition today: 500,000 people incarcerated in US prisons and jails for nonviolent drug-law violations; 1.8 million drug arrests last year; tens of billions of taxpayer dollars expended annually to fund a drug war that 76% of Americans say has failed; millions of people now marked for life as former drug felons; many thousands dying each year from drug overdoses that have more to do with prohibitionist policies than the drugs themselves; and tens of thousands more needlessly infected with AIDS and hepatitis C because those same policies undermine and block responsible public health policies. All these, and many more, are the consequences, not of drugs per se, but of prohibitionist policies that have failed for too long and that can never succeed in an open society, given the lessons of history. Why did our forebears wise up so quickly while Americans today still struggle with sorting out the consequences of drug misuse from those of drug prohibition? It’s not because alcohol is any less dangerous than the drugs that are banned today. Marijuana, by comparison, is relatively harmless: little association with violent behaviour, no chance of dying from an overdose, and not nearly as dangerous as alcohol if one misuses it or becomes dependent. Most of heroin’s dangers

opinion

hibition

e Wall Street Journal, Ethan Nadelmann

are more a consequence of its prohibition than of the drug’s distinctive properties. That’s why 70% of Swiss voters recently approved a referendum endorsing the government’s provision of pharmaceutical heroin to users who could not quit their dependences by other means. It is also why a growing number of other countries, including Canada, are doing likewise.

Perhaps the greatest reassurance for those who quake at the prospect of repealing contemporary drug prohibitions can be found in the era of prohibition outside of America. Other nations, including Britain, Australia and the Netherlands, were equally concerned with the problems of drink and eager for solutions. However, most opted against prohibition and for strict controls that kept alcohol legal but restricted its availability, taxed it heavily, and otherwise discouraged its use. The results included ample revenues for government coffers, criminals frustrated by the lack of easy profits, and declines in the consumption and misuse of alcohol that compared favourably with trends in the United States. Is President Barack Obama going to commemorate Repeal Day? I’m not holding my breath. Nor do I expect him to do much to reform the nation’s drug laws apart from making good on a few of the commitments he made during the campaign: repealing the harshest drug

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Yes, the speedy drugs (crack, cocaine, speed and other illicit stimulants) present more of a problem but not to the extent that their prohibition is justifiable while alcohol’s is not. The real difference is that alcohol is the devil we know, while these others are the devils we don’t. Most Americans in 1933 could recall a time before prohibition, which tempered their fears. But few Americans now can recall the decades when the illicit drugs of today were sold and consumed legally. If they could, a post-prohibition future might prove less alarming.

In 1919, the United States passed the 18th Amendment to the Constitution, prohibiting the sale of alcoholic beverages. By 1931 per-capita alcohol consumption had returned to pre-prohibition levels but thousands of people were being blinded, crippled or killed by adulterated moonshine. Bootleggers bragged that they “owned” the police and in nearly every major city, gang wars doubled the nation’s murder rate. In 1933 the 18th Amendment was repealed. The Progressives had failed to “build an alcohol-free America.” Craig Goodrich, Rant Magazine (July 1998)

sentences, removing federal bans on funding needle-exchange programs to reduce AIDS, giving medical marijuana a fair chance to prove itself, and supporting treatment alternatives for low-level drug offenders. But there’s one more thing he can do: promote vigorous and informed debate in this domain as in all others. The worst prohibition, after all, is a prohibition on thinking. • Ethan Nadelmann is the executive director of the US Drug Policy Alliance. Abridged from http://online.wsj.com (5 Dec 2008).

The Hep C Review

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The Hep C Review

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opinion

Obama’s HIV fix: NSP a major component Regardless of how one might feel about people who use drugs, Needle and Syringe Programs are effective and essential — and there is momentum for change, writes Allan Clear.

hat if we had a mechanism that stopped the spread of HIV, that experts had speculated would work even before the cause of AIDS had been identified, and that subsequent scientific enquiry confirmed was effective? We do: that mechanism is needle and syringe programs, aka NSPs. What if we had US national governments dating back to President Ronald Reagan that knew what worked and yet fought against it, lied to the public, bullied local governments and generally saw the spread of HIV as justified, purely because the people affected were drug users, and drug use is addressed in the United States by making it as dangerous as possible? What if men, women and children had been needlessly infected with HIV purely to teach them “the evil of their ways”? And what if we knew that the majority of these people were African American or Latino? Sadly, this is an exact description of the political response to NSPs and to the HIV epidemic among US injecting drug users. A ban on NSPs has existed in the United States since 1988, when Congress prohibited funding to the program. In order to overturn the ban, it had been incumbent on the surgeon general to determine that NSPs prevent the spread of HIV and do not increase drug use. Evidence to support these conditions has been met repeatedly. In 1998, under President Bill Clinton, Secretary of Health and Human Services Donna Shalala certified scientific evidence in support of NSP as a valid public-health intervention; however, Clinton did not act to have the ban lifted. Not only are NSPs effective in halting the transmission of HIV, evidence from New York demonstrates that hepatitis C (HCV) transmission rates among injection-drug users can also be

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significantly lowered. The incidence of HCV infection among drug injectors has begun to drop from 80% to below 40% among newer injectors. Harm-reduction services, such as NSPs, promote the prevention of HCV, as well as making medical treatment and social services more readily available to people who are living with HCV. The maintenance of the ban on NSPs callously excludes drug users from receiving essential prevention and intervention services and carries a symbolic dimension that delegitimises NSPs and undermines public health advocacy efforts. Regardless of how one might feel about drug users, NSPs are effective and essential, and there is momentum for change. During the recent presidential campaign, each of the Democratic candidates endorsed removing the federal ban during their term in office. One of the candidates was elected president, and another was appointed secretary of state. President Barack Obama’s HIV platform says he will “support legislation that would lift the ban on federal funding for syringe exchange as a strategy to reduce HIV transmission among injection-drug users and their partners and children”. In January, Congressman Jose Serrano, introduced into Congress a bill that would lift the ban: the Community AIDS and Hepatitis Prevention Act of 2009. The time to act is now. We need to insist that the United States joins the rank of NSP-enlightened countries such as Australia, Holland, Canada, the UK, Iran, Moldova, and others. The damage that has been wreaked over the last 20 years cannot be undone, but a new direction can be forged. • Allan Clear is the executive director of the Harm Reduction Coalition. Abridged from www.alternet.org (17 January 2009).

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How do some people avoid hep C while injecting for many years? To reduce the future health burden of hep C, it is imperative to better understand how to prevent transmission and avoid infections. Peter Higgs reports on Victorian research.

n Australia, as in most western countries, the spread of hep C is dependent on preventing transmission among people who inject illicit drugs. Factors thought to be associated with hep C transmission are often interrelated and complex and include the social and structural determinants of drug use and ‘risk’, in addition to specific injecting practices. Nevertheless, we know that in a range of locations, some people who inject have been able to avoid hep C infection. For some this is despite reporting risky injecting behaviours with other people who have hep C. This raises the question — what are the specific injecting behaviours that markedly increase or decrease a person’s risk of exposure to the hep C virus (HCV) and infection? Is it that some people who inject are simply lucky or alternatively are very proactive about how they inject? A third possibility is that some people’s immune systems may protect them from infection. With these questions in mind, we are currently investigating the multiple factors that potentially affect hep C transmission, using a prospective cohort study of people who inject. We recruited 374 people across Melbourne between July 2005 and July 2007 and tested them for HCV. Of that number, 116 were found to be both antibody negative and PCR negative. Since then, we have retested 196 people at least twice and found that 109 of them were classified as HCV-unexposed, having tested negative to anti-HCV antibodies and RNA at their last test.

Of these “negative” participants, 52% had been injecting for more than five years and we would expect them to have been exposed to HCV. Initial immunological investigations and analyses using a new assay for epidemiological research called ELISPOT show that some of these participants have evidence of previous exposure to HCV. The proposed study is both novel and important because it will use a sensitive method for detecting exposure to HCV not previously used in epidemiological research like this — the ELISPOT test. ELISPOT testing enables us to identify people who, in the past, would have been classified as never having been exposed to HCV (testing negative to both HCV antibodies and HCV RNA), but who in fact have been exposed to HCV but have not developed antibodies. This suggests that their immune systems may have fought off HCV so quickly and effectively that antibodies never developed. Our ongoing study allows us to explore the social, behavioural, environmental and immunological factors that have enabled some people who inject to avoid exposure to HCV. We have started using in-depth qualitative interviews to identify the specific individual differences in behavioural and environmental factors that may either facilitate HCV exposure or, alternatively, enable people to avoid HCV. We believe that our study will have significant implications for hep C prevention. • How do some people manage to avoid hepatitis C infection despite injecting for many years? Higgs, P., Aitken, C., Hellard, M. & Maher, L. Good Liver, Summer 2008, pages 8-9. Also see Mo’s letter, ED61, p5 and research update, ED52, p49. Ed

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Mental health problems and Australia’s youth Jill Stark reports on alarming new figures revealing that one in four young people in Australia are battling a mental illness, with many problems triggered by alcohol and drug use — which we know putts them at risk of blood-borne viral infection, including hep C.

he first snapshot of Australia’s mental health in a decade found that generation Y is being ravaged by depression, anxiety disorders and substance abuse. Australian Bureau of Statistics (ABS) data reveals that 26% of people aged 16 to 24 — about 650,000 young people — suffered mental illnesses last year. Anxiety problems including panic attacks, obsessive compulsive disorder and post-traumatic stress disorder were the most common, with 15% of young people affected. Around 13% suffered conditions related to dependency on alcohol or other drugs such as sleeping pills, amphetamines and heroin. A further 7% had mood illnesses such as depression and bipolar disorder. The figures come after an October 2008 summit of mental health experts last week declared a “state of emergency” in youth mental health. Young Australians with mental disorders, many of which develop in adolescence, were at greater risk of suicide, self-harm and drug dependence because of gaps in treatment, they said.

“But I’m not sure the sense of urgency from governments is as great as the need dictates. I don’t think they realise how much investment and political support is needed to address this. Without it, I think we’re going to see continuing deterioration.” Professor McGorry warned parents that the ABS figures could be underestimated. “These are annual prevalence figures so that’s just a one-year snapshot, whereas cumulatively, by the time they get to 25, the risk is even higher. Everyone who’s got a teenage kid must realise that they have got a one-in-three chance of developing a significant mental health problem by the age of 25,” he said. • By Jill Stark. Abridged from The Age, (24 Oct 2008).

Professor Pat McGorry, head of the Orygen Research Centre and one of Australia’s leading experts on youth mental health, said the figures — coming from face-to-face interviews with almost 9,000 Australians — had not improved in 10 years which suggests a systemic failure in treatment.

“This is a national emergency. It’s a huge, big public health problem,” Professor McGorry said.

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He said far greater levels of family breakdown than in previous generations were causing significant emotional turmoil for young people. Parents often did not recognise that a teenage mood swing could be a sign of something more serious. And many young people suffered in silence, unaware that their distress signified deeper problems.

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Truce on hardline sentencing Image via www.images.google.com

The New South Wales Opposition has pledged a dramatic break with the tradition of promising to increase punishments and fill jails, reports Andrew West.

he New South Wales Opposition has pledged to end the “law and order auction” in a dramatic break with the tradition of promising to increase punishments and fill jails. The Coalition’s justice spokesman, Greg Smith, said hardline sentencing and prison policies have failed. He told The Sydney Morning Herald he would invest more money and resources in rehabilitation to break the cycle in which almost half of all criminals in New South Wales prisons reoffend after their release. “While I think there are some areas where the law could be even tougher, such as showing more concern for the families of victims of homicide, there are other areas where I am concerned that prisoners are not properly being rehabilitated, not given a chance to go straight in a community that really would want them to go straight,” Mr Smith said. Before becoming the Liberal MP for Epping, Mr Smith was the state’s Deputy Director of Public Prosecutions for five years. While he remains very keen on punishment and deterrents for crimes of cruelty, especially against children, Mr Smith said that with 10,000 inmates in New South Wales jails and a recidivism rate of 43.5%, the punitive approach was not working. “So far as enforcement of the law and prisons are concerned, based on the experience I have gathered over the years as a prosecutor. It seems to me that our prisons are full of people who suffered learning difficulties in their youth or had a deprived upbringing or have drug dependence or mental problems. There’s a lot of those people in our jails. I am not excusing the conduct that got them into jail but I think that some of them need more of a kick along from the system.” “Unless you do something for them after they get out of jail, the more likely they are to hurt society again and commit more crime.”

The NSW Council for Civil Liberties hoped Mr Smith’s stand signaled an end to the “auction”. “Greg Smith is not a softie,” council president, Cameron Murphy, said. “He’s a tough-minded conservative. But the fact that someone like him is questioning the line shows just how absurd it’s become.” As attorney-general in a Coalition government, Mr Smith would increase funding for drug and alcohol rehabilitation schemes, education programs that teach inmates trades and skills, and post-release accommodation, such as halfway houses. Mr Smith conceded his attempt to emphasise rehabilitation over retribution was politically risky. “I am conscious of the importance of the media, especially the talkback programs, as they affect politics in this state,“ he said. For Mr Smith there is also a personal dimension to the debate. He has five children and some of their friends have committed offences, such as “pinching cars, things like that”. He has even been a character witness for some of the offenders. “The kids generally have been able to recover and they haven’t turned into criminals,” he said. “If you can get them young and they realise the seriousness of the situation they’re in, you often will turn them back to leading a decent life.” • By Andrew West, SMH, (8 Jan 2009). With 40% of male and 64% of female prisoners in NSW having hep C (compared with 1.3% in the general community), a better rehabilitation focus in prisons — with a major hep C treatment component — would really benefit the large number of prisoners living with hep C and could dramatically reduce long term health care costs for future NSW budgets. Ed

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my story

Helen’s story: getting hep C and dealing with it I had not used needles before and, when I started to, I made sure I always bleached borrowed fits or used fresh ones if available. I was always overcautious, for fear of HIV, hep C and B, etc. Blood-borne diseases didn’t even come up in any of my early days, in any real discussions. When I was 18, I moved back to Tassie and the next year I fell pregnant. I still used needles, and was still overly careful when it came to fresh fits. When I was 22, I fell pregnant again and went through another time of feeling guilty for using while pregnant (but old habits die hard). When both my girls were a bit older, I got a blood test done, but was too busy to pick up the results. A long time ago, I went to a tattooist and got my first kid’s name tattooed on me. Roughly two years later, I had my second kid’s name tattooed on me. There was a rumour that the tattooist had hep C and that many people had got it from his dirty needles.

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I thought it was just mean gossip but, when I was in my thirties, I started to feel lethargic and nauseous. I went to my doctor, got my blood test results back and she said that I had hep C. I had my fiance for support but he was too scared to get a hep C test for fear of finding out he might have it too. When I heard the bad news I was so worried that he would dump me, but he’s standing by me, which is wonderful. I was especially worried when I had our son (another Caesarean) because I thought that there might be a chance that he got my hep C. Anyway, my doctor suggested I could go on interferon but I’ve seen how sick my friend was when he was on it and it scares me. I have to drag myself all the way to the chemist every day to get my methadone and it’ll be hard when I’m sick from the side effects. But, it’s gotta be done. I want to see my grandkids — not just my own kids — grow up. They are three, eight and 11yrs old: two girls and a boy. I love them dearly, and my fiance, who I want to grow old with! •

Helen, Tasmania

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s a child, I just didn’t seem to get on with my mother. Aged 16, I left home in Tassie and headed for the mainland and Sydney. I was there for three weeks before I started using heroin.

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Jack Bruce is back and he feels free

The legendary Cream bassist cheated death and even wrote music while in a coma, writes Edi Stark.

t the height of his career, the legendary bass player Jack Bruce was one of the most famous musicians in the world. With Cream, the world’s first rock supergroup, he sold 35 million records and played sell-out gigs that influenced successive generations of rock stars. Bruce’s rock‘n’roll lifestyle took its toll on his health. Five years ago, he developed liver cancer and had to have a transplant that nearly killed him. Many wrote him off, but now he is back, confident as ever, and preparing for a world tour. The four decades since Cream broke up have not been easy for him. He pursued a solo career and produced several albums, but a heroin dependence almost cost him his life. Looking back, Bruce, 65, admits that drugs were at the root of his problems. “I was told I had cirrhosis of the liver and that led to cancer,” he says. In 2003, Bruce was given a liver transplant. He says it wasn’t the transplant that nearly killed him, but subsequent complications caused by a drug he was prescribed during the procedure. “One in 1,000 people can’t tolerate it and I just happened to be that one,” he says.

So, why get back together for the Cream reunion? For Bruce it has always been about the music. As a child growing up with musical parents, he grew to love jazz. He won a scholarship to study cello and composition at the Royal Scottish Academy in Glasgow but left because he found the institution “too Victorian”. Even during his wild time with Cream, Bruce was happy to step away from the limelight to pursue a purer, less commercial form of music. There is no doubt that Bruce has been a great musician. He set out to be the best bass player in the world and thinks he still is. “I’m still fast, if that’s what you mean,” he says. • Abridged from The Sunday Times (21 Dec 2008). We do not know whether or not Jack Bruce’s liver illness is hep C related. His story, though, highlights health issues that some people with hep C — albeit a small number — may eventually face. Ed

Bruce fell into a coma and his family were summoned to his bedside over fears that he wouldn’t survive. But, in his comatose state, Bruce found himself writing music and lyrics in his head. He recalls his wife, Margrit, playing music in his hospital room that clashed with the tunes he was composing in his mind. “It became a torture and I couldn’t tell her to turn it off,” he laughs.

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While he was still in hospital, Bruce was asked if he would join Eric Clapton and Ginger Baker for a series of Cream reunion concerts at the Royal Albert Hall in London and New York’s Madison Square Garden. And so, in May 2005, Bruce took to the stage again and belted out Sunshine of Your Love, White Room and I Feel Free, the old classics that he co-wrote with lyricist Pete Brown.

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promotions

hep C bookmarks O

ur hep C bookmarks have proved handy in promoting greater awareness within the general community around hep C. Almost 250,000 have been distributed via 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

my story

Angie’s story: embracing the will

n November 2007, I lost my mother when she was 52, due to hep C. She passed away eleven weeks before I was due to give birth to a beautiful baby girl at age 24. A year has passed and, unbelievably, I have found the strength to find a positive side from such a tragic ordeal. Instead of being bitter and dwelling on the experience, I have decided that I can make a difference. On the anniversary of my beloved mother’s passing, I decided to volunteer my services to the Hepatitis C Council. I believe that I can contribute to breaking the barriers of discrimination and prejudice that still clearly affect people with hep C. I live in Medowie, a suburb up near Newcastle Airport. I am attempting to raise a greater awareness of hepatitis C by distributing resources provided by the Hepatitis C Council — to businesses and service providers in my local areas of Port Stephens and the Hunter region. The great thing is that the Hepatitis C Council has a broad range of resources and I am not limited to spreading the word only through brochures at medical practices. Armed with the Council’s bookmarks and body art postcards, I have also been approaching places such as pharmacies, pathology practices, community centres, libraries, pubs, newsagents, tattoo parlours and wherever my legs take me — I am trying to think outside of the square. To quote the famous French writer, Victor Hugo, “People do not lack strength, they lack will”. I take strength in these words and I quote them to try to encourage others to do the same in their local region. I have embraced the will to make a difference — you can too! Many thanks Angie! See Bookmarks promo, left. Ed

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Angie, NSW.

my story

Joanne’s story: more than I bargained for

was recently invited to attend a public speaking workshop that was being held by the HIV Positive Speakers’ Bureau. Although my status is not HIV positive but HCV positive, as a C-een & Heard speaker for the Hepatitis C Council, I thought it would be a good idea to go and brush up on my speaking skills.

The treatments for either virus are difficult and can be fraught with horrendous side effects. The decision to commence treatment is a big one. Getting support, whether it is from friends, family or a support group is very important to combat the difficulties inherent in treatment and in life in general.

It was a cold and windy winter morning in Sydney. The workshop began at 9.30am and concluded at 5pm. The coordinator, Mr Santana, was most impressed with the attendance numbers; there were only two participants who were absent. Fifteen people, male and female, of various ages and from different walks of life came together to learn skills for sharing their stories of living with a blood-borne virus, whether that virus was HIV or HCV. There was no discrimination between the two.

In conclusion, it has really opened my eyes to have been able to share the experiences of the courageous people at the workshop. To appreciate how our status affects our day to day living and gain a deeper understanding of our lives. I also gathered some useful tips on presenting my story as a C-een and Heard speaker.

As far as transmission of these viruses, each of us there knew how we got them — enough said. The thing I hadn’t bargained for was the level of similarities between living with HIV and living with HCV. There was obvious angst when individuals were diagnosed with either of these viruses and depending on when the diagnosis was (for instance in the 1980s, HIV was like receiving a death sentence as there was not the treatment that there is today). The same scenario applied to those diagnosed before the 1990s with HCV; many people know hep C was called “nonA non-B” and there was no treatment for it either.

•

Joanne, C-een & Heard speaker C-een & Heard is a Hepatitis C Council NSW program that recruits, trains and facilitates hep C positive people speaking at events such as training seminars or workshops. Ed

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Living with either virus causes concern over disclosure and many of us at one time or another had told a person in confidence who had decided to shout it from the rooftops. Learning when to tell another of our status is a big issue, as well as discrimination. Some have lost friends due to disclosure; some have been ostracised from their families due to disclosure. Both HIV and hep C can cause feelings of hopelessness, loneliness, social isolation and depression in their respective hosts. Finding a good doctor is of paramount importance for those living with either virus, especially when considering treatment options. The Hep C Review

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feature Hello, I have been living with hep C for a few years and experience symptoms from time to time. I have heard that lots of people with hep C find complementary medicines beneficial. What are they and how can they help me?

Other factors to consider include the location and cost of the therapist and your level of comfort with the treatment process. Like pharmaceutical medications, complementary medicines can be potent and need to be undertaken with a full awareness of your health concerns and any other medications you may be taking.

People living with hep C explore various options when making choices regarding their health. Some choose conventional medical treatments whilst some manage their illness with complementary medicines, and some choose both. Of course, some people use neither.

It is rare for herbs to harm the liver when they are prescribed by a complementary medicine practitioner.

Many people report positive results from using complementary medicines. Some overall benefits from using these medicines may include stress reduction, pain relief, increased energy levels, boosting of the immune system or improvement in general well-being and quality of life. Some complementary medicines can be particularly beneficial for people living with hep C. For example, a reduction in symptoms and improved liver function tests may be noticed with some herbal preparations (Australian CH100 trial). They may also reduce the side effects of conventional treatment (pegylated interferon and ribavirin.) Having said that, there is limited research into the effectiveness of complementary medicines for hep C. Some people report good results while others notice few benefits at all. If you are considering using complementary medicines, it is important to consult a complementary therapist before jumping in. It is important to choose a complementary medicine that suits your needs, whether they are physical, mental, emotional or spiritual. Some examples of common therapies include Traditional Chinese Medicine (TCM), herbalism, acupuncture, aroma therapy, homoeopathy, naturopathy, mind-body interventions (e.g. yoga, meditation), energy therapies (e.g. reiki) and using vitamins and mineral supplements.

Before choosing a complementary therapist itâ&#x20AC;&#x2122;s a good idea to have a general check up with your doctor, so you can be clear with your complementary therapist about your health needs. It can also be a good idea to tell your doctor and/or liver specialist that you are considering complementary medicines. Some natural health practitioners are registered with professional bodies so make sure you choose a practitioner who is properly qualified, knows about hep C and has experience working with people who have hep C and other liver diseases. There may be many questions to ask yourself and your practitioner before making your decision about complementary medicines. Many may be answered in the booklet, Complementary and Alternative Medicines for Hepatitis C. It may be useful to talk with other people who have received certain medicines before you begin a course of treatment. Should you require more information regarding complementary medicines or an appropriate practitioner in your area, or want a copy of the above booklet, please contact the Hep C Helpline on 1800 803 990 for more information.

â&#x20AC;&#x2DC;Hello Hep C Helplineâ&#x20AC;&#x2122; is brought to you by the Hep C Helpline team. The questions are based on genuine calls; however, some details have been changed to ensure caller anonymity.

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council keyhole Continued from page 2. Innovative and very exciting is Street Shot, a free photo essay project. Some young people engage in risky behaviour involving alcohol and other drugs and our work helps to reduce the blood borne virus and alcohol-related harms associated with those behaviours. Street Shot is a health promotion initiative run in partnership with youth organisations. This project will work with young people and specific youth services to create a photo essay (or photo voice) focusing on issues associated with the impact of alcohol and other drugs, unsterile tattooing and piercing on young peoples’ health. Our C-een & Heard Service DVD, produced in late 2008 with the generous input from our positive speakers, will be used by our education staff on rural education sessions. Our C-een & Heard Service is made up of people with or who have had hepatitis C who accompany our education staff to education sessions in Sydney and tell health and other workers about their personal experiences of living with hepatitis C. This new project will enable C-een & Heard to reach workers in rural and remote NSW. We have just produced a new resource, the Picture Hep ABC Game based on the hep ABC game found on our website. It is aimed at people with lower English literacy skills, and helps to differentiate between the three most common forms of hepatitis, plus encourage discussion about preventing transmission. March 17 will see the first of the monthly support groups being run here at the Council. In 2008 we held four drop in events which were very successful. This is an extension of that service. See p48 for details. Our as-yet-to-be-named Easy Read Magazine hit NSW streets in January 2009. Designed for people with hep C or at risk of getting it, this quarterly comic style publication has also been selected by the NSW Dept of Corrective Services education section as a learning resource for all prisoners who take part in literacy classes in jail. What better way to reach some of the most marginalised people in NSW with effective hepatitis education messages? The lucky prize winner who suggests the winning name for the magazine will be invited to its official launch in May.

Hepatitis Awareness Week 2009 kicks off on 18 May. With the second World Hepatitis Day on 19 May, the Council will coordinate and help facilitate a range of activities across NSW. Assisted by our first small grants program, affected community members and organisations are encouraged to carry out local activities that help raise local awareness about viral hepatitis, and help advocate for improved local prevention, treatment and support services. Our newly overhauled and updated website will go live in May. Both our existing and the new websites have already achieved World Health Organisation HONcode accreditation status, awarded only to those health websites that reach particular standards of excellence, accessibility, accuracy and design. In March and April we will carry out a community and political advocacy campaign to help encourage the eight NSW Area Health Services to improve resourcing and planning for hepatitis C care and treatment. The recent comprehensive review by NSW Health into HCV care and treatment services led to an injection of funds to the Area Health Services of $4m in 2008/09, of which $2.5m is recurrent. This welcome enhancement will improve treatment access and support – but Area Health Services need to make a far greater financial commitment from their core Area funds to maintain existing services and build on the momentum this new funding provides. Late April will see a team of reviewers engaged by Quality Management Services auditing all areas of our work to ensure that we meet Australian standards that measure an organisation’s ability to be accredited by the Quality Improvement Council. We first achieved accreditation in 2003, and our 2009 round will be the third time we have sought formal confirmation of our status as an organisation that continually improves the quality of all aspects of its work. All this will happen alongside our existing service delivery, representation, capacity building and advocacy work. This year will be another exciting and busy 12 months. • Stuart Loveday, Executive Officer, HCCNSW.

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New directions in hep C therapy

Professor Greg Dore provides an overview of up-and-coming hep C treatment drugs. Treatment of chronic hep C has improved in recent years, particularly since the advent of pegylated interferon (PEGIFN) and ribavirin (RBV) combination therapy. Depending on HCV genotype, 50-80% of people achieve a sustained virological response following 24-48 weeks therapy. However, treatment numbers remain low, in part due to treatment side effects and length of therapy. The development of new therapeutic agents such as protease and polymerase inhibitors provides hope that treatment responses will be improved over shorter treatment durations. This is particularly important for people with genotype 1 infection. Studies have revealed several important features. 1. at least initially, these individual oral therapy agents will be combined with PEG-IFN and RBV. 2. triple therapy is likely to provide additional side effects. 3. early HCV resistance is an important issue, particularly for protease inhibitors. 4. treatment responses should be improved by at least 15-20%, with shortened treatment durations. Two agents, telaprevir and boceprevir (protease inhibitors) have recently finished enrolment into largescale international phase III trials, with separate studies in genotype 1 patients with, and without, previous treatment. Results from these trials should be available by early 2011. Assuming enhanced treatment outcomes and an adequate safety profile, these initial protease inhibitors should be licensed by 2012 with potential access through Medicare (if demonstrated to be cost-effective) in 2013. Although some agents have been withdrawn from development due to significant side effects, several other protease and polymerase inhibitors are in clinical development, including agents that require single daily dosing (telaprevir and boceprevir are dosed three-times daily).

International phase II studies with MK 7009 and BI 201335 (protease inhibitors) are currently enrolling and will include several Australian hospitals (including St Vincent’s Hospital, Sydney). These trials involve patients with HCV genotype 1, including those with, and without, treatment experience. Requirements for study entry for these and other protease and polymerase inhibitor trials generally include: • chronic hep C • liver biopsy within the previous 1-2 years, although some studies are now allowing Fibroscan assessment of disease stage. • no active illicit drug use or alcohol dependency. • no active psychiatric disorder • no evidence of major chronic medical conditions • for treatment-experienced participants, generally a non-response at week 12 or relapse following combination PEG-IFN and RBV is required to be documented. Patients and doctors are “blinded” to the group to which patients are randomised, which means that they are unaware of whether they are receiving triple therapy, or the standard combination therapy (generally between one third and one fifth of people receive standard combination therapy only). • Professor Greg Dore is Head, Viral Hepatitis Clinical Research Program, National Centre in HIV Epidemiology and Clinical Research. See ED63 p34, for an explanation of the different phases in clinical trials.

An overview of current hep C treatment studies Preclinical Protease inhibitors VX-950 (Telaprevir) SCH-503034 (Boceprevir) BI 201335 MK-7009 TMC 435350 ITMN 191

Polymerase inhibitors R1626 R7128 GS-9190 MK-0608 PF 00868554

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Phase I

Phase II

Phase III

membership matters You are vital to us — we are here for You MEMBERSHIP RENEWAL Our 2009 membership year began on 1 March, so we would appreciate your renewal as soon as possible. It’s easy and convenient to renew via our secure online payment facility (go to the Membership section on our website www.hepatitisc.org.au) or use the membership form on the back of this magazine. Please remember that ALL categories of membership, including Zero Fee, do need to renew, as required by our Constitution. Professional and organisational members - please provide your invoice number when making your payment to ensure its correct allocation. EARLY BIRD PRIZE For those members who have renewed early, before 1 March, we say THANK YOU. Our thanks go to all who heeded the call to try for a prize by renewing membership early. You were all entered in the draw for the early bird prize promoted in our last edition of The Hep C Review. Please see your copy of Member News for further information. Our sincere thanks and welcome too for all those who have joined for the first time. NSW HEALTH REPORT OF REVIEW OF HEPATITIS C TREATMENT AND CARE SERVICES NSW Health has released the eagerly awaited final report following its in-depth review of hepatitis C care and treatment services in NSW. We shall post a copy of this report to you along with a letter asking you to take action locally to help ensure its recommendations are implemented by your Area Health Service. SUPPORT GROUP EVENINGS We are pleased to be able to facilitate monthly support groups throughout 2009; to be held on the 3rd Tuesday of every month. The first one is scheduled for Tuesday 17 March, 6-8 pm. Please mark this date in your diary. More information will be posted with your copy of Member News.

A historical perspective Taken from ED4, May 1993. Report on our presentation to professionals on a patient’s point of view. On April 27th, a meeting sponsored by Schering Plough was held in Sydney and chaired by Professor Ron Penny to which were invited a small group of representatives of government, private practitioners, universities and hospital medical professionals from Victoria, South Australia, the ACT and New South Wales. We were allocated a five minute presentation and pointed out the need for action in several areas: Education. More information for doctors, professionals and patients. Availability of literature on HCV in other languages and for other cultural environments (Aboriginal people and people in penal institutions).

More specialist availability. Earlier specialist treatment and treatment for those in remote areas. Acceptance of interferon on the Pharmaceutical Benefits Schedule. Education of GPs about it’s side effects. Availability of counsellors who have been educated in HCV to help patients come to terms with what the disease might mean for their career, lifestyle and family plans. Availability of counselling for significant others. Discrimination issues. Education of the broader community to stop discrimination issues. A policy of safe nursing practice in all hospitals without isolation of the patient. The presentation was well received. • Audrey Lamb, HCCNSW (May, 1993)

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Hepatitis B: a prim

An overview of hep B — that other hepatitis epidemic — provided by the Hepatitis C Council of South A

What is it?

Hep B transmission

Like hep C, hep B is caused by a virus. When the hep B virus enters the body, it travels to the liver, where it lives and multiplies in liver cells. The presence of the virus in the liver stimulates the immune system to kill it. Unfortunately, it is the body’s immune response, not the virus, that causes most of the inflammation and damage to the liver.

Hep B is significantly easier to transmit than hep C. It is spread when blood and other infected bodily fluids (including saliva, semen and vaginal fluids) enter the bloodstream either through a break in the skin or through mucous membranes. A pregnant woman with hep B infection can transmit the infection to her baby at the time of birth—this is the most common way the virus is spread in developing countries around the world.

The impact of hep B infection depends on a person’s age when they become infected. Infants with hep B infection almost always develop a long-term (chronic) infection, whereas people who get the infection as adults have a 95% chance of clearing the virus from their body. Many people with hep B do not get sick, and do not know they have hep B virus infection. It is therefore very important that all people who might be at risk of having chronic hep B infection have regular liver health checks with a doctor who is very knowledgeable about hep B. Some people experience tiredness, nausea and jaundice. Infants rarely develop symptoms of infection. About 50% of adolescents and adults develop jaundice when they first get the infection, which is called acute hep B. There are many similarities in the effects that hep C and hep B have on the body because both attack the liver.

Chronic hep B A person is diagnosed with chronic hep B when they have the virus infection for longer than six months (confirmed through blood tests). Chronic, lifelong hep B develops in just approximately 5% of adults, some children but most infants who come into contact with the virus. People with chronic hep B are likely to have a lifelong infection, and although they generally remain in good health, they have an increased risk of developing serious complications, such as cirrhosis and liver cancer. Importantly, people with chronic hep B have the potential to spread the infection if they do not follow some simple precautions.

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Unsterile injecting equipment or unsterile tattooing or body-piercing equipment are also significant problems. Close contact, including the sharing of toothbrushes, razors, nail files or other personal items, may lead to the exchange of body fluids, as may injuries incurred playing contact sports. Donated blood is screened in Australia, but receiving a blood transfusion in some countries can still be extremely risky. Accidental needlestick injury or splashing of infected blood or body fluids can be an issue, especially for health care workers.

Testing for hep B There are several blood tests available to diagnose and monitor hep B. The interpretation of these tests is not always straightforward and may require the expertise of a GP or liver specialist. There are other tests that can detect changes in the liver, such as liver ultrasound, liver biopsy and fibroscans. These tests are used to diagnose cirrhosis and liver cancer, just as with hep C.

Treatment for hep B There are several types of antiviral medicines available to treat hep B in Australia. Some are taken as an oral tablet and have very few side effects. However, these treatments often need to be taken for a long time, which means the virus may develop resistance to the medicine. Each treatment has different benefits and side effects.

feature Image by James A Perkins, taken with thanks from http://people.rit.edu/japfaa/index.html

mer

Australia.

Reducing the risk of liver damage It is really important that everyone with chronic hep B infection has their liver health status regularly monitored by a doctor who is up-to-date on hep B treatment. This is particularly true for some Aboriginal people, and for those people in Australia who were born in SE Asia, China and the Pacific region, who may have contracted hep B at birth. Just like people living with hep C, those living with hep B should eat a balanced diet that includes a variety of foods to meet the bodyâ&#x20AC;&#x2122;s need for energy, growth and repair. Unless a person with hep B has significant liver damage, there are no particular foods that should be favoured or avoided. Alcohol causes additional liver damage and intake should not exceed the Australian Alcohol Guidelines (see end) and should be completely avoided if cirrhosis is present. Similarly, smoking cigarettes should be reduced and preferably stopped. It is also important to avoid contracting other bloodborne viruses, such as hep C or HIV, as this can dramatically affect a personâ&#x20AC;&#x2122;s health and cause further liver damage.

Vaccination

Image taken with thanks from http://profiles.nlm.nih.gov/VC/B/B/C/R/

The hep B vaccine is very safe and provides immunity more than 95% of the time. The vaccine is usually given by three injections over six months. In Australia, all infants and adolescents aged 10 to 13 years are provided with hep B vaccination at no cost. It is strongly recommended that people at risk of hep B exposure get vaccinated. For more information, phone 1300 HEP ABC (1300 437 222) or visit www.hepatitisaustralia.com â&#x20AC;˘ Abridged with thanks from Hep C Community News (#40, p10), magazine of the Hep C Council of South Australia. Information in this article was based on B Positive: All you ever wanted to know about hep B, available electronically from www.ashm.org.au Australian alcohol guidelines: www.alcohol. gov.au/internet/alcohol/publishing.nsf/Content/ guidelines The Hep C Review

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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. 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

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

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

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

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The Hep C Review

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March 2009

y easy read magazine y easy read easy read magazine magazine NEW

edition 1 January 2009

stay tuned for edition 2 coming soon ...

with a new name!

see page 27 for details

To tell us what you think of the mag or to receive a copy of edition 2, contact Scott swest@hepatitisc.org.au or sms 0404 440 103

The 3rd Tuesday of each month, 6pm - 8pm Hepatitis C Council of NSW Level 1, 349 Crown St, SURRY HILLS ph: 1800 803 990

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research update Cigarettes and hep C raise liver cancer risk

Silibinin and treatment for nonresponders

USA — There appears to be a link between smoking and hep C infection, leading to a more than 136-fold increased risk of hepatocellular carcinoma (liver cancer) in men, according to a team at The University of Texas MD Anderson Cancer Centre.

Austria — Intravenous silibinin, derived from milk thistle, provides a substantial antiviral effect in people with hep C who have not responded to pegylated combination therapy, clinicians from Austria report.

Dr Manal Hassan and colleagues conducted a case-control study of 319 patients with hepatocellular carcinoma (HCC) and 1061 healthy controls to evaluate the effects of active and passive smoking on risk factors for HCC in men and women. Regular cigarette smoking was associated with HCC in men and heavy alcohol consumption was associated with HCC in women, Dr Hassan’s team reports in the International Journal of Cancer. “We conclude that sex differences were observed in HCC’s relationship with cigarette smoking and alcohol consumption,” the authors write. “Controlling smoking exposure might be a prudent approach to the prevention of HCC, especially in patients with chronic viral hepatitis infections.” Cigarette Smoking, Hepatitis C Virus Synergistic in Raising Liver Cancer Risk. Hassan MM, et al. Int J Cancer 2008;123:1883-1891. • Abridged from www.medscape.com

Dr Peter Ferenci and colleagues from the Medical University of Vienna treated 16 people who previously failed to respond to combination therapy with IV silibinin 10 mg/kg/day for seven days. On day eight, combination therapy was started. They reported in the November issue of Gastroenterology that HCV RNA declined in all people on IV silibinin, however, RNA levels increased again after the infusion period in spite of combination therapy. In a subsequent dose-finding study, though, six of 14 people achieved RNA levels of less than 15 IU/mL after a 14-day infusion of 15 or 20 mg/kg/ day silibinin. As in the first study, combination therapy was started on day eight. At week 12, HCV RNA was undetectable in seven people who received the 14-day infusion of IV silibinin. Summing up, Dr Ferenci noted that the current observations suggest that silibinin “may be a very useful drug treatment of PegIFN/RBV nonresponders or in future combinations with HCV protease or polymerase inhibitors”. Silibinin Infusion Has Antiviral Effect Against HCV in Nonresponders. Ferenci P, et al. Gastroenterology 2008;135:1561-1567. • By Megan Rauscher, Reuters Health.

In previous readership surveys, many people said that they wanted detailed information on hep C. These ‘research update’ pages attempt to meet this need. Individual articles may sometimes appear to contradict current knowledge but such studies are part of overall scientific debate. They help broaden our overall knowledge and help develop consensus opinion on a particular research topic. The following articles have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). Ed

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research update Vaccine shows benefit in phase II trial

Needlestick injuries, OH&S and correctional staff

USA — An investigational vaccine, GI5005, improves people’s response to hep C combination therapy, researchers report.

Australia — With the imminent opening of the Alexander McConachie Centre, Canberra’s new prison, it is timely that Australian researchers have published an assessment of the extent of needlestick injuries among correctional officers.

Interim phase II results of a study of GI5005 were presented by principal investigator Dr John McHutchison of the Duke Clinical Research Institute at the annual meeting of the American Association for the Study of Liver Diseases (AASLD) in 2008. “GI5005 is a heat-killed immunotherapy designed to elicit antigen-specific host responses with the goal of improving the rate of immune clearance,” Dr McHutchison explained. The investigators randomised 140 people with genotype 1 who were either treatment-naive (74%) or treatment-resistant (26%) to treatment with GI5005 and combination therapy, or to combination therapy alone. Dr McHutchison presented an interim analysis of the first four weeks of triple therapy. “Treatment-naive patients with high viral loads at baseline saw a 2.6-fold improvement in RVR (rapid viral response) by four weeks,” Dr McHutchison said. “A significant improvement was also noted in the rate of viral reduction ... with a two-fold improved slope for people receiving GI5005 plus standard of care,” Dr McHutchison added. The magnitude of increased viral clearance with GI5005 treatment was comparable in all patient subgroups, including prior non-responders and patients with high viral load at baseline. “This represents early but important evidence that a person’s natural immune response can be harnessed to positively ... impact the course of chronic hep C infection,” Dr McHutchison said. “This provides proof of concept,” AASLD President Dr Arthur McCullough told Reuters Health. “It shows that the vaccine stimulates the innate immune system and that viral load dropped in both groups — in treatment-naive patients and in nonresponders.” • By Martha Kerr, Reuters Health (3 Nov 2008).

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The study was conducted in two Australian states in 2006 using a self-report questionnaire. Twothirds of the 246 prison officers who completed the survey reported that they had found needles and syringes in their prison workplaces and 10% of them (7% of the total sample) had experienced at least one needlestick injury during their prison officer career. Most of these injuries occurred during searches. Fortunately, serological testing for blood-borne viral infections following injury was common, but less than half the injured officers accessed support services. The authors point out that there have been no published reports of prison officers acquiring [blood-borne viral infections] via accidental needlestick injuries. They suggested that introduction of needle and syringe programs (NSP) in prisons is a pragmatic, inexpensive intervention for reducing the risk of needlestick injuries. Prisons in at least six countries, including Spain, Switzerland and Germany, offer sterile equipment to drug injecting inmates. Needles and syringes held by the inmate must be stored in a rigid container in a designated area of the inmate’s cell, reducing the risk that an officer may receive a needlestick injury. They concluded that needlestick injuries appear to be a relatively rare occurrence, but may be further reduced by improving search techniques and equipment and regulating needles and syringes in prisons. • An exploratory study of needlestick injuries among Australian prison officers. Larney, S & Dolan, K. Int J Prison Health (2008) Vol. 4(3): 164-8.

research update Nonalcoholic fatty liver disease and hepatitis C virus: partners in crime USA — Both nonalcoholic fatty liver disease (NAFLD) and chronic hepatitis C (CHC) are frequent causes of chronic liver disease. In recent years, there have been significant revelations as regards the relationship between NAFLD and CHC. A study led by Dr J Blonsky of the Division of Gastroenterology and Hepatology, Brooke Army Medical Center, Houston, USA, aimed to conduct a systematic, evidence-based review of the epidemiology, pathophysiology and potential treatments of coexistent NAFLD and CHC. Terms such as hepatitis C, fatty liver, NAFLD, nonalcoholic steatohepatitis and steatosis were searched on medical databases up to January 2008. References from selected articles and pertinent abstracts were also included. The researchers found that hepatic steatosis affects up to 80% of patients with CHC and is dependent on both viral and host factors. While insulin resistance (IR) is associated with hepatic steatosis and hepatitis C virus, genotype-specific pathogenic mechanisms have been identified and are currently the focus of intense investigation in the literature. Clinical implications of concurrent NAFLD, CHC and IR include increased disease progression, elevated risk of hepatocellular carcinoma, and decreased response to antiviral therapy. Dr Blonsky concluded that NAFLD and IR are common in patients with CHC virus infection, and that IR is a driving force in the development of hepatic steatosis. Because of the clinical implications of hepatic steatosis and IR in the setting of CHC, further studies evaluating treatments, which may increase response to antiviral therapy, are needed, his research emphasised. Nonalcoholic Fatty Liver Disease and Hepatitis C Virus -- Partners in Crime. Blonsky JJ, Harrison SA. Aliment Pharmacol Ther. 2008;27(10):855865 • Abridged from www.medscape.com

Type 2 diabetes, hep C and treatment response Italy — People with chronic hepatitis C are at risk of developing type 2 diabetes mellitus (DM) and impaired fasting glucose (IFG), and this risk may increase among those not responding to an antiviral therapy. This study aimed to compare the incidence of glucose abnormalities (IFG or DM) after antiviral therapy between people with sustained virological response (SVR) and nonresponders (NR). Two hundred and two people were enrolled by our centre in investigational trials or routinely treated with interferon or peginterferon (with or without ribavirin) from 1988 to 2001, with available baseline sera stored at –80°C. The baseline data included age, sex, body mass index (BMI), viral load, genotype, liver histologic staging and steatosis, glucose, and cholesterol. Insulin resistance (HOMA-IR) was calculated in the baseline serum. The incidence of IFG or DM at the end of follow-up was compared between patients with SVR and NR. After a median follow-up of eight years, the cumulative risk of DM (N = 7) or IFG (N = 33) among the 202 people was 16.9%. The eight year risk was not significantly lower between SVRs (14.5%) compared to NRs (18.8%). The hazard ratio adjusted for baseline risk factors for DM and predictors of a poor response (age, sex, HOMAIR, BMI, family history of diabetes, HCV genotype 1, high viral load, cirrhosis, and steatosis). Among other factors, those more associated to IFG-DM were an increasing age, a higher BMI (overweight) and a family history of DM. After adjustment for baseline factors, the incidence of glucose abnormalities was not significantly different between SVRs and NRs. This suggests that HCV clearance does not significantly reduce glucose intolerance risk. Incidence of Type II Diabetes Mellitus and Glucose Abnormalities in Patients With Chronic Hepatitis C Infection by Response to Treatment: Results of a Cohort Study. Dr Chiara Giordanino, et al. Am J Gastroenterol. 2008;103(10):24812487 • Abridged from www.medscape.com

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research update High incidence of reinfection among injecting drug users following spontaneous clearance Australia — In more developed countries the prevalence and incidence of HCV is particularly high among injecting drug users (IDUs). Spontaneous clearance of HCV infection and reinfection is well recognised but the level of protection against further infection conferred by HCV infection and clearance remains uncertain. We conducted a prospective study of HCV infection in IDUs recruited in Melbourne, Australia, using a much shorter median testing interval than in previous studies. Incidence of naive infection and reinfection were calculated by the person-year method and Cox proportional hazards regression used to adjust for covariates. A significantly higher HCV incidence rate was measured in previously infected IDUs (46.8% per year) compared with HCV-naive IDUs (15.5% per year). The hazard ratio for previously infected IDUs compared to HCV-naive IDUs was 2.54 [meaning that people who previously had hep C were 2.54 times more quickly reinfected than people who’d never come into contact with the virus but were subject to the same risk levels]. Viral persistence after reinfection appeared similar to that following naive infection. Conclusion: Our data suggests that HCV infection in IDUs is more likely following prior infection and clearance than in HCV-naive individuals, implying no increased immunity against further infection. This result has important implications for the future development of an HCV vaccine. High incidence of hepatitis C virus reinfection in a cohort of injecting drug users. Aitken CK, et al. Hepatology. 2008 Dec;48(6):1746-52. • Abridged from NSP Forum.

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Vitamin D deficiency and chronic liver disease USA — Researchers from the University of Tennessee in Memphis measured the vitamin D levels of 118 people with chronic liver disease. Researchers found 92.4% had some degree of vitamin D deficiency and at least one third were severely deficient. Severe vitamin D deficiency was more common among people with cirrhosis. “Since deficiency is common among these people, vitamin D replacement may hopefully prevent osteoporosis and other bone complications related to end stage liver disease,” said lead researcher Dr Satheesh Nair. The study included 43 hep C patients with cirrhosis; 57 hep C patients without cirrhosis; 18 cirrhosis patients without hep C. The severity of vitamin D deficiency was divided into three groups: mild (between 20-32 ng/ml), moderate (between 7-20 ng/ml), and severe (less than 7 ng/ml). Vitamin D, a fat-soluble vitamin, helps the body absorb calcium and plays a crucial role in the growth and maintenance of strong, healthy bones. A lack of vitamin D causes calciumdepleted bone, which can weaken the bones and increase the risk of fractures resulting from osteoporosis. Vitamin D deficiency common in patients with IBD, chronic liver disease. Nair SP, et al. American College of Gastroenterology. ScienceDaily 13 October 2008. • Abridged via EurekAlert!

research update Development Medical web searches can trigger anxiety of liver cancer USA / Australia — Playing symptoms to serious concerns 13 years after doctor on the web often leads may lead to unnecessary people to mistakenly believe sustained response that they are suffering from rare anxiety, investment of time, Japan — Although several recent reports have shown that hepatocellular carcinoma (HCC) developed in patients with chronic hep C even after having a sustained virological response (SVR) to interferon therapy, it is not common for HCC to develop more than ten years after SVR. Case presentation – A 73-yearold Japanese man with chronic hep C who achieved SVR to IFN therapy 13 years ago was admitted into our hospital because of huge multiple liver tumours along with marked elevation of the tumour markers.

illnesses, US researchers say. The large-scale longitudinal study of how people search for medical information online was released by two researchers from Microsoft Research in Redmond, Washington. The researchers looked at logs of what pages people visited and also surveyed the healthrelated search experiences of 515 individuals as part of their study. “Web search engines have the potential to escalate medical concerns,” or “cyberchondria,” write Dr Ryen White and Dr Eric Horvitz.

Several diagnostic modalities strongly suggested HCC and histopathological examination was performed. After confirming the diagnosis as well-differentiated HCC, we successfully treated these tumours with intensive combination therapies.

White is an expert in text mining, web search and navigation, and Horvitz is president of the Association for the Advancement of Artificial Intelligence. They described cyberchondria as “unfounded increases in health anxiety from reviewing web content.”

Our report highlights the need for careful follow-up for more than ten years even if the patients with chronic hep C achieve SVR to IFN therapy.

“However, the web has the potential to increase the anxieties of people who have little or no medical training, especially when web search is employed as a diagnostic procedure,” they say.

Development of hepatocellular carcinoma in a patient 13 years after sustained virological response to interferon against chronic hepatitis C: a case report. Tsuyoshi Mashitani, et. al. Cases Journal 2009, 2:18 • Abridged from www. casesjournal.com

“Common, likely innocuous symptoms can escalate into the review of content on serious, rare conditions that are linked to the common symptoms,” the researchers add. For example, someone with a headache may determine they have a brain tumour.

and expensive engagements with health care professionals,” White and Horvitz say.

The researchers say search engine architects have a responsibility to work against cyberchondria by, among other things, improving the way search results are ranked. “They must be cognisant of the potential problems caused by cyberchondria, and focused on serving medical search results that are reliable, complete, and timely as well as topically relevant,” say White and Horvitz. Not convinced Australian researcher Dr Annie Lau of the Centre for Health Informatics at the University of New South Wales says the study is interesting but does not support the conclusion that people are suffering cyberchondria. She says the study looked at web logs but not what people actually did. “Whether people are suffering from cyberchondria or simply wanting to get more information about a health topic, we can’t tell at this stage,” Lau says. But, she says more research is needed to improve the way people use the web to inform and manage their health care. • Abridged from ftp://ftp. research.microsoft.com/pub/ tr/TR-2008-178.pdf

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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: 1 Blood tests: people must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive). 2 Contraception: women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both a woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective

forms of contraception (one for each person). Female partners of men undergoing treatment must not be pregnant. 3 Age: people must be aged 18 years or older. 4 Treatment history: There are two brands of therapy. With one brand, people must not have had prior interferon or peg interferon treatment. With the other brand, people can access re-treatment (phone the Helpline for more info on this). Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2 log drop. The baseline and 12-week tests

must be performed at the same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of their higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2 log drop in viral load, may only continue treatment after 24 weeks if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may only continue treatment after 24 weeks if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006, a biopsy examination is no longer a mandatory pretreatment test for people wanting to access government subsidised S100 hep C pharmaceutical treatment.

CAUTION Treatment with interferon alpha has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised PegInterferon Alpha-2b if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or 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 — which would have an impact on treatment monitoring. See ‘Monitoring Points’, p54. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access Interferon-based therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, people should contact their nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see p52). NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • A nurse educator/counsellor for patients • 24 hour access to medical advice for patients • An established liver clinic • Facilities for safe liver biopsy. Treatment centres exist in most parts of NSW. Phone the Hep C Helpline for the contact details of your nearest centre. NSW Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • HCCNSW (above info is reviewed by the Commonwealth Department of Health 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 sideeffects (Ed 15, p 6). A similar trial, but on a larger scale, was later carried out (Ed 24, p 8). A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (Ed 45, p 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to: • Will he or she consider all relevant diagnostic testing? • Will he or she 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? • Is he or she a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to arrangements about payment; perhaps a discounted fee? It is also important to continue seeing your regular doctor and/ or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and well experienced in working with people who have hep C. Additionally, they should be members of a relevant professional association. Phone the Hep C Helpline (see p56) for more information and the contact details of relevant professional associations. • HCCNSW

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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 health care 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 6-8pm at the Hepatitis C Council, Level 1, 349 Crown Street (corner of Crown and Albion St) 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 through the NSW Hep C Helpline that can be accessed by NSW inmates and prison staff. Call this free and confidential service by using the 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 www.daa.asn.au General Practitioners It is important that you have a well-informed GP who can support your long-term health care needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system. The NSW Hep C Helpline may be able to refer you to doctors and other health care workers in your area who have been involved in hep C training. Alcohol and other drug services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users and AIDS Association) on 8354 7300

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(Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a drug or alcohol related problem. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW) for advice and details on your nearest clinic. 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 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 illness, these clinics offer confidential pre- and post-test discussions and HCV blood tests. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and 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 phoning your local town council. Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English and for more details, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hep C Helpline distributes some information resources in various languages.

support and information services Further, the Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C related legal issues. They offer advocacy and advice on a number of problem types including: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and health care complaints; and the appointment of attorneys and guardians. For more information, phone 9206 2060 or 1800 063 060, or visit www.halc.org.au 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 with a volunteer please phone 9332 1599 or 1800 803 990 (Freecall from regional NSW). Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning between 10.30 and 11am, (Eastern-Standard-Time). Go to 3CRâ&#x20AC;&#x2122;s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Hunter Hep C Support Services A service for people of the Hunter region living with hep C. It is linked to health care professionals working with hep C treatment and care. 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 keeping you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information, please contact Vince on 4734 3466. Northern Rivers Liver Clinic Support Group An opportunity for people contemplating treatment, undergoing treatment, and for those who have completed treatment to get know each other. For more information, please phone 6620 7539. Port Macquarie Hep C Support Group Peer support available for people living with or affected by hep C. For information, please contact Lynelle Wood on 0418 116 749 or Jana Vanderjaght on 0418 207 939. Parramatta Support Group A support group for people living with hep C, including those on treatment. From 7pm to 8.30pm, the first Thursday of each month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 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. Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. They offer free and confidential services to affected people and their families and/or carers. For more information, contact Traids on 9843 3143. 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 $6.00 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 Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require. Items are loaned free of charge but you need to pay return postage. Videos/DVDs The Big Combo (HCCNSW, 2002): 20 min DVD with two people who consider pharmaceutical treatment for hep C in very different ways; information on current treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English. Everybody’s Business (MHAHS/ANCAHRD, 2004): Covering hep C and HIV; suitable for health workers working with groups. Comes with a facilitator’s workbook. Available in English, Khmer, Somali, Indonesian and Thai. Look Back Look Forward (Kathy Sport/Ronin Films, 1998): 30 min video with real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers. English. (Members only) Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hep C clinical management, treatment and prognosis. Suitable for health workers. (Members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hep C management, treatment and lifestyle issues, as well as other liver disorders. Suitable for individuals and health workers. (Members only) •

HCCNSW

Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information: www. hepatitisc.org.au/hepcouncil/disputes_policy. pdf Or phone us here at the office (see p3 for our contact details).

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Upcoming events Lost at C supportive drop in evening, 17 March, Surry Hills (HCCNSW) Mental Health Promotion [in a blood-borne viral context], 17 March, Sydney (Consortium). Heplink prisons forum, 23 March, Camperdown (HCCNSW). Blood Borne Viruses and STIs workshop for Practice Nurses 28 March, Wagga Wagga, (ASHM). Hepatitis Awareness Week 09, 18-22 May, (Hepatitis Australia & HCCNSW) Please phone the Hep C Helpline for more information about these events (see p2). (Want your event featured here? Contact the Editor.)

Want to help your Council? We are a membership organisation and are 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 NSW affected by hepatitis. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • Writing letters, stories and articles for the Council‘s magazine, The Hep C Review • Proofreading and sub-editing for The Hep C Review and other Council publications • Magazine mailout work • Office admin volunteering (including focus testing of resources) • Local awareness raising (see p38) • Media speaker and C-een & Heard speaker work • Board of Governance work Want to find out more? Please phone the Hep C Helpline for more information.

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Our loan library

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

We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hep C throughout NSW.

Name

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

Postal address

The Hepatitis C Council of NSW respects and upholds your right to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information. For a copy of the policy, please contact the Council office on 02 9332 1853 (Sydney and non-NSW callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hepatitisc.org.au

Membership 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.

NSW health care workers One of our services is the NSW Hep C Helpline, an information and support phone line that is able to refer callers to a range of services and health care workers in their local area (within NSW only). If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular HCV update information. Please note that we encourage services on our referral database to become members of the Council. As the most widely-read hep C publication in NSW, targeting both people affected by hep C and health care workers, The Hep C Review is provided free to all members of the Council.

B. For individual healthcare or related professionals

Occupation

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

Ma y we li st yo u o n o ur re fe rra l d a ta base ? Free copies of The Hep C Review required

2 5 10 20 50 80 160

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

Suburb/town State

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

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

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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:

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

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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:

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year:

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$25

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$10

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

Individual health or allied professionals

$40

7. Payment, GST and postage instructions

Community-based agency (Management Committee run)

$50

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

Public/private sector agency

$70

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

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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