Hep Review 52 by The Hep Review magazine archive

The Hep C Review

Edition 52

March 2006

editor’s intro

ello everyone and welcome to another edition of The Hep C Review. Apologies for this edition arriving in your mailbox a month late (due to staff holidays) but we hope that you will enjoy it now that it has hit the street. This edition arrives not long after we have started receiving feedback from our Strategic Planning survey forms that were mailed out early in March. In this light, and without going into a detailed readership survey (next coming up in ED60), it is probably a good time to reflect on our magazine and how it is distributed. I say ‘our’ magazine because we see readers as making up the most important factor in The Hep C Review formulae. We do value feedback as it leads to ongoing improvements in the mag. Many of our design features, the centre spread prevention poster pages and these editor’s introductions are all a result of feedback. •

Do you have any comments on The Hep C Review?

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Are the articles generally interesting?

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Do articles cover a wide enough range of topics?

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Do you find the layout and design appealing?

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Would the magazine benefit from a name change?

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Could distribution be improved?

These are the sort of questions that we seek input on. Your comments can be posted or emailed in to the office (see contact details on opposite page).

combination therapy. It would represent a new treatment option rather than a refinement of an existing medicine. The US Arkansas prison blood scandal story will introduce many readers to a sad story of private sector profiteeringgone-mad. The fact that recent visitor to Australia, Bill Clinton, is involved in the scandal makes it all the more interesting. Readers who are interested in Australia’s front line defence against blood borne viruses - needle & syringe programs will probably find our range of articles on pages 30 & 31 interesting. They appear as a result of the world’s first documented case of a member of the public contracting hepatitis C from a needlestick injury. Congratulations to Magdalena, Jewells and Dinesh for their articles in this edition focusing on “Access to and quality of hepatitis C treatment,” (pages 34-36). These pieces were submitted as part of our Article Writing Competition and provide insight into care and treatment services. We welcome such input into the magazine and look forward to further contributions (see below). Our research updates cover a range of issues - transmission, natural clearance, alcohol, cannabis, coffee, sexual problems, viral load as a predictor of long term outcome, diabetes, and the issue of treatment and psychiatric illness. We hope you find these keyholes into the world of HCV research of interest.

Paul Harvey Editor

s usual, we have tried to include a range of articles in this current edition.

I was particularly interested to read “HCV genotype 1 grown in lab for first time” an article that reminds us that research continually broadens our understanding of HCV and strengthens the response to the hepatitis C virus epidemic. The news item “Changed biopsy rule will lead to increased treatment availability” highlights our increasing access to gold standard hepatitis C treatment. Perhaps the next step will be offering PBS funded pegylated combination therapy to those people who responded to monotherapy or standard combination therapy but then relapsed. For those with a taste for strange tales, “Shetland woman with HCV bites man who refused dance” will be a good read. Those people with an interest in doctors’ obligations to patient confidentiality might also find it interesting. The “Interview with a tattooist” article continues the public discussion around tattooing as a potential risk practice for transmission of blood borne viruses. As tattooing becomes more and more popular, it will be interesting to see how that industry responds to such risks. “Hello Hep C Helpline” is a new itiative which allows interesting questions that have been put to Helpline staff to be raised and discussed in a wider forum. Stories are checked to ensure that caller’s anonymity is maintained while the basic thrust of their issues is discussed. Within ED52, we also promote the Polymerase Inhibitor Trial. This trial is especially interesting as it tests a brand new medicine that is unrelated to the current interferon-ribavirin

Hep C Review article writing competition The focus for our upcoming edition will be “Strategies for self management,” and we invite people to write and submit articles exploring these issues. •

Published articles attract a $50 prize

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The competition is open to anyone within Australia

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Author’s name and contact details must be supplied (for editorial purposes but need not be included in the printed article)

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Articles must be between 400-500 words

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Whether a submitted article is published or not is at the discretion of the Editorial Committee.

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We seek different viewpoints, although articles considered unnecessarily inflammatory or vilifying will not be published

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The deadline for contributions to the ED53 article writing competition is 5 May 2006.

We’re really looking forward to receiving your articles.

The Hep C Review

Edition 52

March 2006

Editor

Calling all members

The Hepatitis C Council of NSW is an independent, community-based, non-profit, membership organisation. We are funded by the NSW Health Department. Hep C Review editor: Editorial Committee:

Tim Baxter Teresa Clonan Paul Harvey Louise Houtzager Stuart Loveday Yvonne Preston Lisa Waller

Look for your special Membership Page inside (page 40). Our 2006 membership year began on 1 March we look forward to continuing to receive your renewals. It’s now easier than ever join or renew online www.hepatitisc.org.au or use the enclosed form.

Paul Harvey

HCR medical & research advisors:

Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Sue Kippax Prof Geoff McCaughan Dr Ingrid van Beek Dr Alex Wodak

S100 treatment advisor:

Mick Turner (AGDHA)

Proof reading:

Prue Astill Liz Roberts

MARLTON comic by Andrew Marlton

email:

phone:

02 9332 1853

fax:

02 9332 1730

hccnsw@hepatitisc.org.au

website:

www.hepatitisc.org.au

postal address:

PO Box 432

DARLINGHURST NSW 1300 AUSTRALIA Hep C Helpline:

1800 803 990 (NSW) 9332 1599 (Sydney)

Aside from HCCNSW editorial comment, views expressed in this magazine or within flyers enclosed with it are not necessarily those of the Hepatitis C Council of NSW. Neither are such views necessarily those of our funding body. Contributions to The Hep C Review are welcomed and are subject to editing for spacing and clarity. Contributors should supply their contact details - although we do not publish such details unless asked. We’re happy for people to reprint information from this magazine provided that The Hep C Review and any particular author/s where such exist are credited, and the edition number and date are highlighted. This permission does not apply to graphics or cartoons. Many of these are not subject to public domain and must not be reprinted without permission of original artists/publishers. If you have any doubts, please contact us. ISSN 1440 - 7884

The Hep C Review

Edition 52

March 2006

contents News

My story

HCV genotype 1 grown in lab for first time

UK deaths from hepatitis C double

New legal move in UK hep C blood battle

Hep C disaster in Bangladesh

Health support for drug users lax in regional areas

Australians with hep C gain easier access to treatment

Article writing competition Hepatitis C, interferon and the medical profession

Article writing competition My dream for a healing centre

Article writing competition Treatment in an isolated area

Promotions

Changed biopsy rule will lead to increased treatment availability

Affordable access to internet information

Chile begins treatment program

Allied health workers welcome proposed shake-up

NSW isolated patients travel & accomodation assistance scheme

Canadian research into HCV vaccine

The hepatitis C information clearinghouse

Call for needle exchange program in jails

The Australian Hep C Lounge

120,000 worse off under DSP changes

The Australian Trial in Acute Hepatitis C

$685,000 awarded in hep C law suit

Tell your treatment story and help raise hep C awareness

Shetland woman with HCV bites man who refused dance

New treatment clinic at Canterbury Hospital

Features

Research update Alcohol use progresses hep C related cirrhosis

Cannabis smoking and hepatitis C

Interview with a tattooist

Coffee and tea may lower chronic liver disease risk

Hello Hep C Helpline

Sexual dysfunction and HCV

General practitioners play increased role in treating hepatitis C

Viral load helps predict disease outcome (overview)

Australian trial of HCV polymerase inhibitor treatment

Viral load as a predictor of progression of chronic hepatitis C (detailed)

Trials explained

Diabetes link to liver disease

Heplink member survey 2005: informing the planning process

Erythropoietin assists with therapy induced anaemia

Erythropoietin is not cost effective

US prison blood scandal revisited in new film

Combo therapy in people with psych illness

Furore at prison tattoo proposal

Hepatitis C impact in the United States

Calls for Australian prison needle exchange

Mothers pass hepatitis C more often to infant girls

Hepatitis C treatment: how some people have coped

Heroin mothers: an intimate view

The normalisation of recreational drug use: part 2

No increased risk for transmission via breastfeeding

Australian drug use trends

Why some overcome HCV naturally

First documented case of hep C infection from a public needlestick injury

Regular pages

Implications - an organisational overview

Letters

Implications - a worker perspective

Prevention poster

Needle program better than being in denial

Membership news

Setting a standard approach to drinking

Council profile - Teresa Clonan

Gen X and baby boomers face obesity time bomb

Interferon-based therapy

Fifth Australasian viral hepatitis conference

Complementary therapies

Support / info services

Noticeboard

Membership form / tax invoice

The Hep C Review

Edition 52

March 2006

letters

A remote perspective I would like to take this opportunity to thank the Hepatitis C Council for providing much needed material to our area of NSW. I work as a sole practitioner for a population of 30,000 and an area of around 200 square kilometres. My clients have welcomed all the resources they have received and as a result have made decisions about how best to improve and promote their own level of health. Individuals with hepatitis C living in rural and remote communities often report to me that they have no knowledge of what the result means. They report that they have felt isolated and in one case ashamed and feeling alone in the world. The knowledge that hepatitis C is one of the fastest growing concerns in modern society helps them to accept their diagnosis and using the material they receive from the Hep C Council, they can make choices and changes that are in their best interest - and that of society as a whole.

A health care worker in the field (name supplied) Also see article, page 36.

news

Direction A wise man told me once that we are all on a road between oblivion and salvation, it does not matter where you are on the road, but what is of utmost importance is which direction you are facing. Today we have the ability to share the joy and the smile within our hearts, for we are all facing the right direction in our lives. We are facing salvation, and we are facing it together as a family of friends who's main purpose is the pursuit of health, the support of others in need, and the sharing of love with friends, family, and our hep C brothers and sisters worldwide. Knowing we are facing the right direction is enough to pull us through the roughest of times, and the darkest of days. Yet at times we may have our setbacks, we may find ourselves taking more than a few steps backwards, but we do not let ourselves get turned around. We face forward. We continue our quest. We pursue good direction with all the strength we can muster, or borrow if need be, from our family, friends, and faith - a faith that we gladly share with others along the way. We can stand tall today, and move forward, we can share the smile that comes with a positive lifestyle. We can be proud of who we are, what we are doing, and who we have the ability to become. We do not let our past define us, but we let it guide us on our journey toward salvation.

HCV GENOTYPE 1 GROWN IN LAB FOR FIRST TIME USA - Researchers at the University of Texas Medical Branch at Galveston (UTMB) have successfully grown the most common and damaging form of the hepatitis C virus in human liver cell cultures. This achievement — the first laboratory cultivation of a “genotype 1” hepatitis C virus — is expected to significantly assist antiviral drug and vaccine discovery programs. For many years, hepatitis C research was handicapped by scientists’ inability to produce infectious hepatitis C virus in the laboratory. Other laboratories have recently achieved successful culture of “genotype 2a” viruses that are less common and more readily treated by interferon. However, laboratory growth of a genotype 1 virus has been an elusive goal long sought by many laboratories. “This cell culture system should be very useful in helping us understand how the virus gets into cells, which could lead to the development of entry inhibitor drugs like those developed for HIV,” Lemon said. “It’s already giving us a better understanding of hepatitis C virus biology.”

Abridged from a Newswise article, via www.hcvadvocate.org

A fellow hep C traveller, Compcomp42, USA

The Hep C Review

Edition 52

March 2006

news UK DEATHS FROM HEPATITIS C DOUBLE UK - Deaths related to hepatitis C infection in England have doubled in less than a decade, while the number of people needing hospital treatment who are known to be infected with the virus has tripled, the Health Protection Agency said yesterday. There has also been a three-fold increase in liver transplants because of the infection, whose rapid growth is mainly put down to the injecting drug culture dating back to the Woodstock generation. Even people who tried drugs briefly 20 to 30 years ago are at risk of developing liver failure or cancer. The agency is still revising its estimates of how many people are living with hepatitis C since the existing estimate of 200,000, or around 0.5% of the population, is based on studies from the mid-1990s. The Hepatitis C Trust has estimated that around 500,000 people in Britain have the blood-borne virus, although not all will ever have obvious disease. But experts commissioned by the trust have warned around 200,000 people will die in the next 20 to 30 years unless diagnosis and treatment improves.

Abridged from The Guardian, 14 December 05.

The Hep C Review

Edition 52

NEW LEGAL HEP C MOVE IN UK DISASTER IN HEP C BANGLADESH BLOOD BATTLE UK - Families want answers over the use of contaminated blood Relatives pushing for a judicial review into hepatitis C deaths from infected blood have asked a court to limit the costs in the event their case fails. About 550 people received contaminated blood in Scotland in the 1970s and 1980s. Their families believe the full truth has never been properly investigated. Lawyers for three individuals who contracted HCV have urged the Court of Session in Edinburgh to limit the liability to £50,000, or they may have to abandon the action. Scottish Executive ministers have refused to order a public investigation. This legal action for a judicial review is at a very early stage. The three families bringing the case had hoped the Health Minister Andy Kerr and Lord Advocate Colin Boyd would agree to the families' expenses being capped at £50,000. But the minister and Lord Advocate have refused.

Bangladesh - Hepatitis C virus, which has infected more than 4,000,000 people in Bangladesh, might lead to a health disaster in the near future as the country has all the favourable conditions for quick spread of the killer virus, warned experts. In Bangladesh, the number of affected people is about 3 per cent of its population said AKM Shahidul Islam, an associate professor of the virology department of Sir Salimullah Medical College. Harunur Rashid, a virology expert at Roche Bangladesh Limited, said random transfusion of untested blood, sharing of needles in injecting drugs and widespread use of the same shaving razors by several persons have made the people of Bangladesh more vulnerable to the disease. Although the urban people have now learnt to use disposable syringes, a huge number of people living in villages still use single needles in more than one occasion. An assistant professor of microbiology of the Sir Salimullah Medical College, SM Shamsuzzaman, said barbers in both urban and rural areas are putting the people at high risk of infection by the hepatitis C virus.

The families have stressed they are not asking for any compensation, but said there was a clear public interest in establishing what happened.

Besides in many cases, especially during emergencies, patients receive blood from unknown donors who have not been properly tested, and their contaminated blood may infect the receivers with the deadly virus, he added.

They said Scotland was using HCV contaminated blood some 18 months after England was using a treatment program which killed the virus.

Experts said that infection by the virus could be resisted to a large extent by conducting a widespread awareness campaign.

Abridged from http:// news.bbc.co.uk via www.hcvadvocate.org

March 2006

www.rednova.com via BBC Monitoring South Asia via www.hcvadvocate.org

news HEALTH SUPPORT FOR DRUG USERS LAX IN REGIONAL AREAS

AUSTRALIANS WITH HEP C GAIN EASIER ACCESS TO TREATMENT

Australia - A survey has found injecting drug users in country centres find it harder to access clean equipment and face greater discrimination than their city counterparts.

Australia - People with hepatitis C will no longer be required to have a liver biopsy to gain access to subsidised treatments. The Commonwealth Government is hoping this will make it easier for more individuals to undergo treatment.

The National Drug and Alcohol Research Centre at the University of New South Wales interviewed more than 250 users for its survey. One of the authors, Kate Dolan, says rural-based users find it more expensive to buy new needles and syringes. Professor Dolan says it is also more difficult to access testing for HIV and hepatitis C in rural areas. "We did find the rural drug users were facing a little bit more discrimination in the health care setting that might be putting them off," she said. "People were making derogatory comments about them or making them wait longer - just not providing health care in a non-judgmental way." Professor Dolan says the types of drugs being used by drug users is also different in country areas. "The country users are more likely to be injecting morphine and benzodiazopines, whereas the city users are more likely to be injecting heroin," she said. "Because the supply of drugs in the country varies - it's easier to get heroin in the cities than it is in small country towns."

Abridged from ABC News Online, 30/01/2006, via www.dailydose.net/

This new measure follows other government actions to subsidise testing and treatments through Australia’s Pharmaceutical Benefits Scheme (PBS) and the Medicare Benefits Schedule. In 2004/05 the government provided $28.7 million for treatment of hepatitis C through the PBS. In August 2002, pegylated interferon received a Section 100 (Highly Specialised Drugs Program) listing and in April 2005 the requirement for an elevated liver enzyme test to access S100 hepatitis C treatment was removed. This latest arrangement, eliminating the need for a liver biopsy before accessing subsidised treatments, comes into effect on 1 April this year. It is estimated that this improved access will add an additional $10 million cost per year to the PBS. On average, each person’s hepatitis C treatment costs are approximately $13,000 per year. Hepatitis C is currently Australia’s second most common notifiable communicable disease, with around 260,000 people having been exposed to the virus and around 195,000 estimated to have chronic (ongoing and longterm) infection. Unless its spread can be reduced, it is projected that numbers of people with HCV could rise to at least 321,000 people by 2020. The government’s National Hepatitis C Strategy aims to reduce the spread through a coordinated national approach to treatment, care, surveillance, prevention and education.

Ministerial press release. Also see article, following page.

The Hep C Review

Edition 52

March 2006

news CHANGED BIOPSY RULE WILL LEAD TO INCREASED TREATMENT AVAILABILITY Australia - The Pharmaceutical Benefits Advisory Committee has recommended removal of liver biopsy requirements for hepatitis C treatment [and this has now been endorsed by Tony Abbott, Federal Minister for Health and Ageing]. The number of people eligible to access hepatitis C treatment is now expected to triple. The PBAC recommended people with hepatitis C will no longer require a liver biopsy to access subsidised PEGATRON®* treatment. The decision followed a review by the PBAC commissioned as part of the government’s National Hepatitis C Strategy. A key priority of this strategy is to ensure more people living with hepatitis C can access and stay on effective treatments. According to Associate Professor Greg Dore, Head, Viral Hepatitis Clinical Research Program, National Centre in HIV Epidemiological and Clinical Research, increased access to Hepatitis C treatment will significantly reduce the future burden of liver disease and lower the costs of hepatitis C to the public health system. “The removal of liver biopsy as a requirement for hepatitis C treatment will improve access for many people, particularly those in settings where biopsy has been problematic to arrange or causes considerable anxiety,” said Associate Professor Dore. “It will also allow people with hepatitis C and early liver disease to access subsidised potentially curative hepatitis C treatment. People with early liver disease often experience a considerable impairment to their quality of life. Successful treatment will improve their day-to-day experience, prevent liver disease progression, and

remove the anxiety associated with a chronic condition. With the majority of people undergoing hepatitis C treatment now being cured of their disease, improving access to treatment is a major public health priority for Australia,” said Associate Professor Dore. Community groups are also highly supportive of broadening access to Hepatitis C treatment. “The PBAC decision to remove liver biopsy brings Hepatitis C treatment in Australia into line with many other western countries,” said Ms Tyrrell, executive officer of the Australian Hepatitis Council. “Liver biopsy can be a painful procedure and it carries inherent risks. Some people who clearly need treatment have been very reluctant to undergo the procedure and therefore were unable to access treatment. We are very pleased that biopsy will now be a matter to be decided between the individual and their doctor and believe many more people will consider treatment. “The more people who can access effective treatments the greater the quality of life for all people with hepatitis C and the closer we come to successfully managing this growing epidemic,” said Ms Tyrrell. Hepatitis C has been the most frequently notified communicable disease in Australia over the last ten years and is the country’s leading cause of liver transplants. It affects an estimated 242,000 people in Australia.

Schering Plough press release. Also see news article, previous page.

CHILE BEGINS TREATMENT PROGRAM Chile - The director of the Chilean National Health Fund (FONASA), Dr Alvaro Erazo, and the directors of Metropolitan Health Services, signed on to a trial program to provide free treatment in metropolitan Santiago for about 200 patients infected with hepatitis C.

According to World Health Organization (WHO), the treatment includes antiviral drugs such as interferon alone or in combination with ribavirin. The high cost of these drugs make the access this program provides a great success for many Santiagans.

During 2005, FONASA invested about US$1 million and for 2006 this will be increased by half. The program includes tests to determine the viral load and genotype, a liver biopsy, abdominal ecotomography and gastric endoscopy.

The Hep C Review

Edition 52

March 2006

Abridged from http://english.ohmynews.com/ via www.hcvadvocate.org

news ALLIED HEALTH WORKERS WELCOME PROPOSED SHAKE-UP Australia - Nurses, physiotherapists and other health workers could soon be given greater powers and have their services covered by Medicare. The radical changes are outlined in a Productivity Commission report released in January 06. It would be the biggest shake-up of health services in Australia since the introduction of Medicare. The report calls for greater use of health workers such as nurse practitioners and physiotherapists. It says patients should be able to claim visits to those practitioners on Medicare. "It's very important that we break down the current rigidity that exists, Robert Fitzgerald, from the Productivity Commission, said. "We need to better utilise the whole of the health work force and part of that is the way in which we fund it." The current referral system would be scrapped with patients by-passing GPs to go directly from allied health workers to specialists. "These proposed changes will improve efficiency of the national healthcare system and give better access to all Australians to the healthcare they need," Daniel Finniss, from the Australian Physiotherapy Association, said. "This is not an attack on doctors," Mr Fitzgerald said. But Australian Medical Association (AMA) says the quality of medical care would suffer. "We have one of the best health care systems in the world and if we take these proposals we may be looking at a much lower standard of care for Australians," Dr ChoongSiew Yong, the vice-president of the federal AMA, said. The AMA believes the solution is to train more doctors to fill the gaps. The proposals are being considered at the Council of Australian Governments Meeting.

Abridged from ABC News Online, 19/01/2006, via ABCHealthupdates

CANADIAN RESEARCH INTO HCV VACCINE Canada - Researchers at the University of Saskatchewan say they have found a possible vaccine to prevent hepatitis C. The researchers say the innovative way the vaccine works could help people who already have the disease get better. Currently there is no vaccine for hepatitis C, which lasts a lifetime in most people it infects. “Any advance in the science to develop the vaccine is a major breakthrough in that area,” said Dr Bhagirath Singh, scientific director of the Institute of Infection and Immunity, one of the Canadian Institutes of Health Research, in London, Ont. Singh is not involved with the study. The results are published in the January edition of the Journal of General Virology. Although many vaccines work by injecting a weakened bug into the body to allow the buildup of antibodies, this hepatitis C vaccine candidate is different, said Dr Sylvia van den Hurk, a senior research scientist with the Vaccine and Infectious Diseases Organisation at the University of Saskatchewan and one of the paper’s authors. The team took key immune cells, called dendritic cells, out of mice and exposed them to one of the proteins in the virus causing hepatitis C. They also treated the cells with a chemical that stimulates their immune response. When put back in the body, the activated cells can “teach” other cells around them to activate the immune response, van den Hurk said. “The problem with the vaccine has been that the virus changes rapidly,” Singh said. “People who are infected do not produce a good immune response.” The vaccine uses a protein common to many strains of the disease to ensure it will be effective against a spectrum of the virus’s strains. Ultimately, the vaccine could be used to prevent spread of the blood-borne disease in high-risk groups such as intravenous drug users, she said. The vaccine could have a role in developing nations, too, where hepatitis C is spreading, along with HIV. But there are several years of lab work ahead before the researchers can test such a vaccine in humans, van den Hurk said.

Abridged from the Saskatoon StarPhoenix, 10 January 2006 via www.hepc.cpha.ca

The Hep C Review

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March 2006

news CALL FOR NEEDLE EXCHANGE PROGRAM IN JAILS Australia - State governments are being urged to implement needle exchange programs in prisons because of high levels of hepatitis C infections among inmates. Irish Penal Reform Trust spokesman Rick Lines has told a workshop on blood-borne viruses held recently in Sydney that prison needle exchange programs have been implemented successfully in 50 countries around the world. In Australia, 34 per cent of all inmates have hepatitis C, while more than 50 per cent of drug users in prisons have the disease. Mr Lines says needle exchange programs do not condone drug use. "Syringe exchange programs in prisons don't condone drug use any more than syringe exchange programs in the community," he said. "They should be working hand-inhand with other approaches to drugs in the community, including supply reduction and criminal penalties and drug treatment programs for people seeking to get off drugs."

Abridged from http:// au.news.yahoo.com via www.hcvadvocate.org Also see article, p23.

120,000 WORSE OFF UNDER DSP CHANGES

$685,000 AWARDED IN HEP C LAW SUIT

Australia - Analysis by the Australian Council of Social Services (ACOSS) has revealed that 120,000 people with disabilities stand to lose income as a result of proposed changes to the Disability Support Pension (DSP).

USA - A man who brought sued a Fremont cancer doctor was awarded $685,000 by a Dodge County jury on Wednesday.

The proposed changes would increase hardship without significantly reducing the number of people on social security. A proposal to limit the number of hours a person can be assessed as working and still get the DSP from 30 to 15 hours is likely to make it much harder to new applicants to get the pension. ACOSS estimates 60,000 people with disabilities who apply for DSP over the next three years would instead be put on lower unemployment payments. On Newstart Allowance, they would be $20-40 a week worse off than if they were on DSP. Another 64,000 people already on the DSP who are assessed as able to work 15 hours per week would keep the DSP but their future payments would be lower than other pensioners because they are indexed differently (linked to inflation rather than average earnings). These people would also have to look for part time work or participate in programs like Job Network.

Abridged from NCOSS News, Vol32, No4, May 2005.

The Fremont man who contracted hepatitis C sued the Cancer Clinic, a nurse and the doctor at the center of the case. Robert Ridder contracted hepatitis C while undergoing treatment for cancer at the Fremont Cancer Clinic. In 2002, an investigation linked his case and 98 others to improper infection control procedures at the clinic. Ridder's suit names Dr Tahir Javed and his nurse, Linda Prochaska. Javed has returned to his native Pakistan and closed the clinic. The award fell short of the amount Ridder and his wife were seeking, according to Ridder's attorney, but was five to six times what attorneys for the doctor and nurse on trial suggested was appropriate. Ronald Palagi, who represented Ridder, said in a news release that his client was pleased that the jury had spoken. "What the Ridders wanted most was an opportunity to tell their story," he said. "We want to thank the jury for their time and careful deliberations." While Javed's Nebraska medical license has been revoked, he remains a regional minister of health in Pakistan. About 80 cases against Javed have been settled. It's possible that the rest could go to trial.

The Hep C Review

Edition 52

March 2006

Abridged from www.theomahachannel.com via www.hcvadvocate.org

news SHETLAND WOMAN WITH HCV BITES MAN WHO REFUSED DANCE UK - A Shetland woman is being held in jail after biting a man's ear knowing that she was carrying the hepatitis C virus. Fiona Manson, 32, admitted biting the man after he refused her invitation to dance. Lerwick Sheriff Court heard that last January the victim had recently returned from abroad to settle down in Shetland, and had gone out with his fiancée and his brother to celebrate the birth of his sister's baby. The group ended up at a nightclub in Lerwick after midnight.

NEW TREATMENT CLINIC AT CANTERBURY HOSPITAL Sydney - Hepatitis C (and B) treatments have significantly improved over the years and disease progression can be halted in a majority of people. People in the Canterbury area can now be assessed for ongoing management and receive antiviral treatment at the Canterbury Hospital Hepatitis Clinic. The clinic will be held fortnightly from Thursday 9 Feb 2006, midday to 2pm.

The procurator-fiscal, Duncan Mackenzie, said Manson was "dancing outrageously on her own on the dance floor" and was "obviously intoxicated".

To make clinic appointments call Canterbury Outpatients clinic on 9787 0164. A referral from your GP is required for medical appointments.

She twice asked the man to dance and twice he "politely refused". Mr Mackenzie said: "He assumed she had made her way back to the dance floor, however, she remained standing behind him.

For more information about the clinic contact Sue Mason, the Hepatitis Clinical Nurse Consultant, on 9515 7049 (no referral is required to see the Nurse Consultant).

"She then bent down and bit him on the left ear. The victim felt immediate and excruciating pain, and what he described as something crunching through his ear." Manson returned to the dance floor while the man's friends carried out first aid on his bleeding ear and took him to hospital, where he was treated with tetanus and antibiotic injections. Two days later he went to see his GP, who told him Manson was infected with hepatitis C. For the next six months the man had to be checked for the virus, before he was finally given the all clear.

Abridged from http://news.scotsman.com via www.hcvadvocate.org

The Hep C Review

Edition 52

March 2006

feature

A Victorian anti-discrimination case ruled that it was reasonable that a tattooist refused a job because the customer admitted he was HCV positive. Jen Johnson of the Hepatitis C Council of Victoria provides an interesting viewpoint - that of other tattooists.

he recent tattoo case in Victoria has attracted a lot of attention, comment and concern. I started to wonder why, in amongst the dialogue, I hadn’t really heard much from the tattooists themselves. Then I realised I wasn’t really surprised since the tattoo industry is essentially a collection of private businesses that pretty much keep to themselves. One of the perceptions that influenced the tattoo case ruling was the notion that tattooing is a marginal practice that doesn’t really reflect mainstream society. This is a really dangerous assumption considering the recent surge of popularity that tattooing has recently had among younger people. I started to wonder how other tattooists felt about this ruling. Did they agree with it? Did it worry them? Would other tattooists have done the same thing?

Allow me to introduce you to Lou, a very busy Melbourne tattooist who was kind enough to sit through an interview for this special issue of Good Liver. What follows is part of fascinating conversation we had about the business of being a tattooist. In describing this unique industry, Lou invites us to take a closer look at some of the important issues facing the tattoo industry and its customers. What are your thoughts about the recent case where court action was taken against a tattooist for refusing to work with a hepatitis C positive customer? I was surprised it even went to court, to be honest with you. I thought most people who would be refused service by a tattooist would think, “Alright, this guy’s not for me. I’m gonna find a tattooist who IS comfortable with tattooing me, and knowledgeable about these things.” There are a lot of really good tattooists out there who have no problem with it. But were you surprised that it happened in the first place? No. Reading the case, I guess the tattooist obviously didn’t feel confident enough in his own skills or standards of procedure.

The Hep C Review

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So have you had discussions with other tattooists about this particular case, about the finding? Yes. I think that it just adds to the confusion. Now everyone’s just wondering what this finding means for the industry as a whole. Do tattooists now have the right to decline services to people with hep C and HIV? We sometimes have to enforce a nightclub style policy, you know like “management has the right to refuse service” if people come in off the street intoxicated or aggro or whatever. Now are tattooists allowed that leeway to treat people with HIV or hep C the same way? I think that’s probably what is going to need to be made clear. So now we’ve got a situation where a legal decision has been made which basically sets a precedent for tattooists to refuse service? From my experience with particular attitudes in the industry there is still a bit of ignorance out there about people with hep C and HIV, and the risks of tattooing them. Even though logically [some tattooists] know the risks are minimal if they follow procedures, and are careful not to stick themselves. It’s almost like a psychological barrier that some particular people are unwilling to get over. They’d just rather decline service and deal with the consequences. I don’t know. Maybe that can be solved with more education. Or maybe it doesn’t matter how much education and how much knowledge they have about hep C, it wouldn’t change. It just freaks them out too much. One of the main points of the case was that the tattooist was somewhat inexperienced. Could something like this have happened to you when you were starting out? I mean yeah, who knows? I might have done the same thing. That guy had only been tattooing a couple of years. How long have you been practicing? Must be eleven years now, and my training was all inhouse training, what we loosely describe as an apprenticeship. Which is basically just a one-on-one situation bound by what the tattooist feels like teaching you, and how they teach you.

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How long did this apprenticeship last? A year. I did 6 months of learning customer relations, drawing, needle making and sterilisation issues, and after that I started doing small tatts and building up my repertoire. So after a year did you feel like you'd learnt enough to be a practicing tattooist? I guess I did! My teacher was very supportive and it was a very busy shop so there was a lot of opportunity to be exposed to different tattoos and the different issues involved. But it’s hard to say cause if you’ve never done it before, you don’t really have a benchmark to compare it to. And there is no industry benchmark anyway really, apart from the regulations that the health department puts down, and they've changed in the 11 years that I’ve been tattooing anyway.

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And during your training, where did things like hep C and HIV fit? They were pretty loosely discussed. It's so long ago that it's quite hard to remember. I was given the little booklet, the [Health Department Standards of Practice] guidelines. It was basically, “Read this, and conform to it.” A lot of the knowledge I have gained has been off my own bat. When did you decide that you wanted to take it further than just reading that booklet? I like to keep learning. I did a hep C awareness workshop with the Hep C Council [VIC] years ago, and then a few years ago I did a one-day course on sterilisation procedures for tattooists. Mayfield [a training organisation] developed the course and sent out an open invitation to the tattoo industry, open for anyone, so it was just a matter of responding.

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And after that you felt confident? Well that course was to introduce the new health department guidelines that were being drafted. After that course I ordered a copy of the draft, in 1998. The new standards were supposed to be implemented in 2000, but they didn’t come in until last year! Do you think other tattooists are like you and take this extra initiative? It’s really hard to generalise. I don’t know many tattooists; I’m kind of just going by reputation. I don’t really hear much negative stuff. It’s such an insular industry, most people keep to themselves, so you only really have contact with the people you work with. And I think everyone is in a similar situation whereby if they want to learn more, or be more knowledgeable about BBVs, then they definitely have to go and find the information. I think that it probably fluctuates between people. Some people aren’t interested. You know, they feel confident in what their local council health inspector gives them, so they don’t really worry about it. What does the local council officer do? Well that’s the thing. I’ve heard that people who work in different areas get a different response from their local council. Like where I work now is a relatively new premises, and literally all the inspector cared about was that the shop had an autoclave [sterilisation machine]. And yet I’ve heard from other tattooists that they’ve been much more strict on their process. You know, from A to Z, from the moment the customer walks in the door. The problem is that there’s no consistency. How would you explain this inconsistency? It seems to be the council area, and probably who the officer is. We don’t know what goes on in their world, and they don’t know what goes on in our world. At the last place I worked there was a different officer for every annual visit. They just turn them ‘round because you know, they’re working up through the ranks. The majority of those people will probably never be tattooed, and are not exposed to the industry. When you get a new officer come in to do an inspection, you’ve got to start over again. They’re not sure what they’re supposed to be doing, and we often find ourselves saying, “this is what you should be looking for.” One result of this finding is that people with blood borne viruses simply won’t tell tattooists if they have hep C or HIV. Are there any other reasons why it might be useful for a tattooist to know if a client has hep C, or HIV? That’s something that I think we would probably like to have the opportunity to explore more with regards to skin health. You know, about people’s immune system, and if tattooing them is going to put them at risk of other infections. I have questions about increased rates 14

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of infection in the actual tattoo healing process, 'cause this relates to the immune system. I think these things need to be discussed, and whether that relates to a tattooist’s right to decline service because they view that they’re putting the client at risk because of the health issues. That’s kind of an issue that I think we would like to explore too. Even with people who’ve got flu, the body takes a lot longer to heal, they might get thicker scabs which affects the quality of the tattoo. So that’s a quality control issue as well. It's not about discrimination for discrimination’s sake. I mean it’s so easy to get an infection. And we do all the best things we can to prevent an infection. But once that customer walks out that door unfortunately the rest of it is up to how their body copes with the tattoo itself. So the tattoo industry is totally unregulated, and standards of practice vary from tattooist to tattooist. How could the industry move to a place where all practitioners have the confidence to tattoo clients who disclose their hep C status? It’s a hard one because yes the industry is unregulated and I would probably say the majority of the industry like it this way. It’s a very unique industry, and it could so easily be saturated. The fear is that if we become more regulated, the government’s going to wanna get their hands on the industry and open it up, and the end result will be more tattooists than what the market can support. So it’s a fine line between balancing the supply/demand of the market and making the education available. You’ve got your old school tattooists who are shitty as it is that there are young people coming up taking work off them. I know it’s probably a very cruel generalisation, but I feel it too. I mean, every week you get a young kid saying, “I want to be a tattooist”. If governments take control of the industry then worst case scenario for a lot of tattooists is that there ends up being a tattoo course people can do at TAFE. That’s what the industry is afraid of. And we just don’t have a market big enough to support that.

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I mean you’ve gotta remember that the industry has lived on the fringe of legality for so long. It’s kind of only the last 10 to 15 years that it has become conventionally open, and not related to the seedier elements of life. So there’s resistance to an overhaul of this unique industry, and I can see why. But are there perhaps other ways that things could change? Is there a way to ensure that all tattooists comply with minimum standards without opening up the industry to every wanna-be tattooist in town? Never say never. But I get the feeling that at the moment if you tried to implement a minimum education standard there’d be uproar. You’ve gotta try and market it to tattooists saying, “this is for YOUR benefit”. That’s the spin it needs to have. I mean if you just do a general mail out like what Mayfield did, how do you guarantee that the tattooists who NEED a top up on their education are gonna do it, unless you make it compulsory?

Because in a lot of ways it’s a Worksafe issue too. I mean, do you guys have unions? There is one so called “association” of tattooists that maybe half of the industry is a member of. The people who aren’t involved with the Professional Tattooists Association of Australia (PTAA) don’t want to be a part of it because of the club politics of that association. So if you were to set up another body like, say the equivalent of like the Australian Medical Association, I think that a lot of tattooists would be very cynical about it because of their dealings with the PTAA. It’s an interesting perception that the industry feels that all these things are imposed on it from outside, like regulations. When there’s actually a really strong element of protecting the industry and it’s practitioners as well. Which is the same protection which people in other industries are afforded. I think it would be really worthwhile for someone, like the Hep C Council VIC, to do a marketing survey of tattooists. And piercers, lets include piercers as well, cause they’re part of the equation. And ask these sorts of questions that you’ve asked me today. I don’t know everyone in the industry and I’m trying not to make broad generalisations but I think that would be a tremendous way to start this discussion, and open people’s eyes. There are probably tattooists out there that don’t even know that this has happened. I think that would be very instructive. There’s no point in having these discussions if one party doesn’t know what the other party thinks. What’s around the corner? What’s gonna happen? Australia is becoming more and more litigious, so it’s definitely an issue where it’s best for us to start protecting ourselves now rather than worrying when its too late. I mean people’s health and lives are at risk on both sides of the coin.

From an interview conducted by Jen Johnson Rural Community Development and Education worker, Hepatitis C Council of Victoria. Abridged with thanks from Good Liver, Spring 05. Also see Tattoo you, ED50 p22.

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“Hello Hep C Helpline” is brought to you by the Hep C Helpline team. The questions are based on genuine calls however some details have been changed to ensure caller anonymity. I am planning on having a child but my partner and I are hepatitis C positive. Does this mean that our baby will get hep C? 95% of children born to hepatitis C positive mothers do not contract hepatitis C. This means that there is a small, about 5% chance, that a baby will contract hep C. The virus can only be transmitted from the mother to their baby and so there is no risk of transmission from the father’s sperm. However, normal household precautions should be followed, such as covering up cuts, and not sharing razors, toothbrushes or nail-clippers. There is an extremely low risk of hep C transmission if you choose to breastfeed your baby and the risk occurs only if your nipples are cracked or bleeding. A mid wife can advise on breast feeding techniques that will reduce the risk of nipple cracking. If nipples are cracked or bleeding then all expressed milk should be thrown away and start breastfeeding again only once the nipples are healed. All babies born to hep C positive mothers will automatically have the mother’s antibodies but this does not mean the baby has the actual virus. Within the first 18 months the antibodies normally disappear naturally. After 18 months, if the baby is tested and still has a positive antibody test, a PCR detection test is necessary to establish whether the child has the hep C virus. If they do have the virus then there is still a 20% chance that they will clear the virus naturally before they are 3 years of age. A PCR detection test can be done from 6 weeks old but most people wait until the child is a toddler or older before getting the test. The hep C virus affects children in a similar way to adults and symptoms may not develop for 10-15 years. It’s rare for young children to show symptoms of hep C or to experience any significant health problems. It is suggested that children (and adults) with hepatitis C eat a healthy, balanced diet that is low in fat, that they have regular mild exercise and avoid being overweight. Children with chronic hep C can benefit from having a GP and/or paediatrician who is familiar with the monitoring and management of hep C. At least annual liver function tests are normally recommended. Consulting a specialist paediatric gastroenterologist or liver specialist may be appropriate for some people.

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I own a large restaurant and my friend who has hep C is going to work for me in the kitchen. Do I need to tell the other staff about his hep C, and is it OK for him to handle food? In almost all occupations, if a person has hep C they are not legally obliged to tell their employer or other colleagues about their hep C. So in the case of working in a kitchen it’s not necessary for others to know. The only types of work that legally require people to disclose their hep C are when they are working in or applying to work in the Australian Defence Force, or are a health care worker who perform exposure prone procedures such as surgery. Hep C is transmitted though blood to blood contact only so there is no risk with handling food and hep C is not transmitted through every day contact. However, hepatitis A is a virus that can be passed on through food and NSW Health has guidelines for food handling that reduces the risk of passing hep A on. It’s important for all workplaces to have ‘standard infection control precautions’ which covers first aid procedures. These standard procedures reduce the risk of transmitting a virus like hep C on to others regardless of who might or might not be infected. A person with hep C should not be treated any differently because first aid procedures treat everyone’s blood as potentially infectious. First aid procedures include: covering any cuts with a bandaid and wearing disposable gloves if attending to a blood spill. Many kitchens use brightly coloured bandaids to avoid them getting mixed in to food. The Hep C Helpline often gets calls from people wondering if they should disclose their status to other people in their workplace. We recommend that before disclosure people consider what the benefits and potential negatives are in telling their workmates or employer. People have been known to experience discrimination or receive different treatment as a result of their hep C.

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GENERAL PRACTITIONERS PLAY INCREASED ROLE IN TREATING HEPATITIS C The Hepatitis C Community Prescribing Pilot can provide people with greater choice for their hepatitis C management and treatment needs. If you live in NSW or the ACT and have hepatitis C, then the following information may be very important in making your decision about accessing treatment. If you are a health care worker, this information may be useful for clients.

he Hepatitis C Community Prescribing Pilot officially began on 1 May 2004 and will continue until May 2007. Under this arrangement, the treatment for hepatitis C is the same as that provided through liver clinics, but much of the management is provided by an accredited community prescriber (GP).

Ninty-one medical practitioners located throughout NSW and ACT have been trained and accredited as hepatitis C community prescribers. They have well established links with a specialist located in a liver or hepatitis clinic in their area. There are many benefits in being treated under this shared care arrangement. Once someone has been started on antiviral treatment by the specialist, the community prescriber can continue to manage most of their treatment and write their monthly scripts. This can be of great help to the individual in reducing the need to attend the liver clinic, especially in rural areas.

Medical practitioners in the community are trained and assessed by the Australasian Society for HIV Medicine (ASHM) then recommended for accreditation to NSW Health. Community prescribers are accredited providing they nominate a link to a publicly funded hepatitis C treatment centre authorised by NSW Health. Accredited prescribers have full access to services provided by these liver clinics for their patients. Ongoing support is available through ASHM to facilitate links between community prescribers and specialist clinics. Specific resources have been developed such as treatment algorithms tailored for each clinic. The pilot is essentially a shared care arrangement between the community prescriber and a nominated specialist at a hepatitis C treatment centre. The community prescriber is responsible for screening of patients and all necessary work-up prior to specialist referral.

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Community prescribers are acting as specialists and authorised to order diagnostic tests. Under the terms of the pilot, only the specialist can initiate treatment but the community prescriber may write second and subsequent scripts for HCV antiviral therapy.

The treatment offered under the Pilot is exactly the same as a patient would receive through the liver clinic.

Under the pilot, dispensing of highly specialised drugs must be from hospital pharmacies.

To find out more about the hepatitis C community prescribing pilot ask your local doctor or call the Hep C Helpline on 02 9332 1599 (Sydney callers) or freecall 1800 803 990 (other NSW callers).

If managed under the pilot, patients visit the specialist and clinic prior to treatment and at 3 monthly intervals throughout the duration of therapy or as otherwise needed.

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A phase one Australian trial into an HCV polymerase inhibitor treatment commenced earlier this year through hospitals in Melbourne, Adelaide and Brisbane, with a new site now open at St Vincent’s Hospital, Sydney.

he Phase One Trial (see right) will recruit a total of up to 60 people, each of whom will have treatment for a two-week period with a post-treatment followup period of two-weeks. The drug is given as an oral dose, either twice or three times per day. It will require frequent testing for levels of the drug and for the effect of the drug on HCV viral load. Three overnight stays in hospital during the four week period are required. Due to the short period of treatment, the study will NOT provide efficacy benefit to clear the hepatitis C virus, but rather will examine the effect of the drug on levels of HCV viral load over the period of treatment. If the drug is shown to significantly reduce the HCV viral load over this period and there were no significant safety concerns, it is likely that it would then proceed to phase II trials. The study has relatively strict inclusion and exclusion criteria, due to the need to examine safety and effectiveness without other potentially complicating factors. Some of the major inclusion criteria are:

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must be aged 18-60 years women must be of non-childbearing potential (e.g. post-menopausal or have had a tubal ligation) must be HCV genotype 1 must have had no previous hepatitis C treatment must have had a liver biopsy in previous three years or willing to have a biopsy

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must have no other significant medical problems

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be able to refrain from illicit drug use prior to, and during, the trial

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smoke no more than 10 cigarettes per day

must not be on current prescribed medications or alternative therapies (or willing to cease alternative therapies)

agree to abstain from alcohol during the trial.

People in the trial will be reimbursed for study participation at a level that would be equivalent to an average income for a two week period plus travel expenses (the two week follow-up period is less intensive). People who are either not working or working part-time will be reimbursed at the same level.

For further information about this ground-breaking study, please contact the St Vincent’s Hospital (Darlinghurst, Sydney) principal investigator, A/Prof Greg Dore on 02 9385 0889

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TRIALS EXPLAINED Several new hepatitis C treatments are in early clinical trial development. Two classes of new drugs that appear to have considerable promise are polymerase inhibitors and protease inhibitors. Both these class of drugs inhibit replication of the hepatitis C virus by directly blocking enzymes which are crucial for viral replication (ability of a virus to copy itself).

Testing of new agents For a new treatment to become licensed for use, there are several stages of testing to assess both the safety and effectiveness of the therapy.

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Cell culture systems – often new antiviral drugs are tested in cell culture systems to assess whether they inhibit replication of a virus.

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Animal studies – once there is evidence of activity in cell culture systems the safety of the drug is initially examined in animal studies.

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Phase I human trials – if animal studies have not demonstrated safety concerns, the next step is to examine safety in humans. This is generally performed by giving the drug for a short period (days to weeks) and increasing the dose of the drug in “cohorts” of people in the study in a stepwise fashion to see if any side effects are experienced at different dosing levels. If significant safety concerns are evident at lower doses, the subsequent higher doses are not given. At this stage early antiviral efficacy is also examined.

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Phase II human trials – if phase I trials provide no significant safety concerns and evidence of antiviral efficacy, then larger trials with longer durations of therapy are conducted. These studies are to gather further safety data, as some side effects may only be evident with more prolonged use, and more closely examine efficacy.

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Phase III human trials – if phase II trials provide no significant safety concerns and further evidence of antiviral efficacy, then even larger trials are conducted. These trials generally compare the new drug to the “standard of care” treatment. For example, if a polymerase or protease inhibitor demonstrates promise in phase II trials, it would then be compared to pegylated interferon and ribavirin therapy in phase III trials.

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Trial press release

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Heplink is a NSW and ACT network of hepatitis C workers aimed at improving and increasing healthcare worker involvement in dealing with hepatitis C. Erol Digiusto reports on a recent survey of Heplink members.

epLink is a NSW-wide network of workers who deal with hepatitis C in the course of their work. Two of HepLink’s key components are an email e-list group which facilitates networking and communication between members, and live information forums which are held every three months in Sydney, and which are videoconferenced to regional/rural locations. HepLink’s activities are co-ordinated by the Hepatitis C Council of NSW, with planning input from a volunteer Steering Committee. At the beginning of last year, the Steering Committee decided to carry out a survey of HepLink members. The HepLink e-mailing list was divided up between the Committee members who - with much detective work and persistence - were eventually able to conduct structured telephone interviews with 53 HepLink members. Following is a summary of what those members told us, and what effects their feedback is having on our planning.

March: Resilience and treatment, complementary therapies, treatment update including impact of deletion of liver biopsy requirement, stages of change in HCV treatment readiness. June: Linking better to drug and alcohol and NSP networks, relationship building, regional/rural perspective. September: innovative health promotion and education projects and initiatives, priority target groups including youth, indigenous Australians and prisoners. December: Engaging and retaining clients. • The interviewed members estimated that only about 28% of their co-workers were HepLink members. Based on the suggestions that they offered regarding ways to expand the HepLink membership, we will: organise targeted recruitment mail-outs to related health workforce sectors, including mental health services, drug and alcohol services, Aboriginal medical services, youth health services, and pharmacies;

• HepLink members work in many different environments, including sexual health, BBV, HIV, Hep C, gastro and liver clinics, NSPs, research centres, drug & alcohol, community health, health promotion, and advisory/advocacy units.

produce a “recruitment poster” that members can use to promote HepLink in their workplaces;

• Members feel that the emails which they receive through HepLink are useful for a wide range of reasons, including providing information about hep C treatment and other issues; providing information about upcoming seminars, workshops, meetings and events; helping them to keep up to date with new projects, research findings and resources; facilitating networking, making contacts, and getting advice and ideas from each other. • There were many suggestions regarding changes to the HepLink forums. As a consequence, the weekdays on which the forums are held will be rotated this year (previously were usually on Wednesdays). Also, if possible, the forum activity will be structured to make them less “didactic” and more interactive with more discussion time. • The Telehealth videoconferencing facility is seen as very valuable, but few of the interviewed members have been able to participate - many more would like to. The steering committee is investigating the feasibility of webcasting or video-recording the forums, so that they can be watched on desktop PCs. • Based on members’ suggestions the following topic areas have been planned for the 2006 HepLink forums:

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publish advertisements in the Hepatitis C Review and the Pharmacy Guild newsletter; regularly post information about HepLink to other relevant e-lists, such as ADCA Update, DiversityLink, and NSP Forum; consider producing a regular HepLink enewsletter that will include Forum material, topical issues, and input from members. This member survey would not have been possible without the sustained efforts of steering committee members Angie Campillo, Julie Elmes, Jenni Lampard, Becky Laybutt, Mark Morris, Janice Pritchard-Jones and Nandini Ray. Thank you! If you are not yet a member of HepLink but you would like to join, please telephone Holly Beasley on (02) 9332 1853 or email heplink@hepatitisc.org.au.

Erol Digiusto is a researcher at the National Centre in HIV Social Research (UNSW) and member of the HepLink Steering Committee.

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A documentary tying Bill Clinton to an Arkansas prison blood scandal that spread bloodborne viruses to thousands around the world screened in Hollywood late in 2005 and has renewed controversy about the long-forgotten story.

he film reportedly uncovers fresh evidence about how thousands in Europe contracted HIV and hepatitis through tainted blood deliberately shipped even after widespread problems were discovered in Canada where some 10,000 had already been infected. Factor 8: The Arkansas Prison Blood Scandal, made by Kelly Duda, reveals how inmates at an Arkansas jail were paid to donate blood despite authorities knowing they had HIV and hepatitis. The documentary shows how senior figures in the state prison system altered prisoners' medical records to make it look like they were not carrying the deadly diseases. The film reveals how for more than two decades, the Arkansas prison system profited from selling blood plasma from inmates infected with viral hepatitis and HIV. Thousands of unwitting victims who received transfusions of a product called "Factor 8" made from this blood died as a result. Duda interviews victims in Canada who contracted the diseases, state prison officials, former employees, highranking Arkansas politicians, and inmate donors. The Arkansas connection to Canada's blood scandal began with a deal Health Management Associates struck with the state allowing collection and sale of prisoners' blood in addition to treatment.

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Because of the exploding AIDS crisis, US regulations did not permit the sale of prisoners' blood within the country. But HMA found a willing buyer in Montreal, which brokered a deal with Connaught, a Toronto bloodfractionator, which didn't know the source of the supplies. Sales continued until 1983, when HMA revealed that some of the plasma might be contaminated with the HIV and hepatitis. The blood was also marketed overseas. Suzi Parker, writing in the Arkansas Times, described how the scandal unfolded: "At the Cummins Unit of the Arkansas penal system during the 1980s, while President Clinton was still governor, inmates would regularly cross the prison hospital's threshold to give blood, lured by the prospect of receiving seven dollars a [litre]. The ritual was creepy to behold: Platoons of prisoners lying supine on rows of cots, waiting for the needle-wielding prisoner orderly to puncture a vein and watch the clear bags fill with blood. Administrators then sold the blood to brokers, who in turned shipped it to other sates and to Japan, Italy, Spain and Canada. Despite repeated warnings from the Food and Drug Administration, Arkansas kept its prison plasma program running until 1994 when it became the very last state to cease selling its prisoners' plasma."

Abridged from www.worldnetdaily.com via www.hcvadvocate.org

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A controversial idea to allow Victorian prisoners to tattoo one another with the state's blessing has been blasted by prison guards.

he proposal has been discussed at several meetings of prison officials and independent experts in a bid to control the spread of disease through sharing of homemade tattoo guns.

Health studies have indicated prison tattoos increase the risk of an inmate contracting the hepatitis C virus.

Corrections Victoria ruled out introducing the jailhouse tattoo parlours but it confirmed the idea had been mooted.

Father Peter Norden, policy director of Jesuit Social Services and former prison chaplain, said a study released last year showed 58 per cent of Victorian prisoners were hepatitis C positive, compared to 1 per cent of the general community.

It is understood the suggestion was made by health professionals during the development of a discussion paper examining the issue of communicable disease transmission in jails.

"I'm not surprised they are addressing issues that might lead to the spread of infectious disease in the prison system because it's a public health issue," Father Norden said.

The Corrections Health Board, which is chaired by Corrections Commissioner Kelvin Anderson and has representation from Department of Human Services and industry experts, is looking at the issue of disease transmission.

Father Norden said what happened in prisons had implications for the wider community because almost all prisoners were eventually released into the community.

The Herald Sun understands the idea involved the corrections system bringing in professional tattooists or buying tattoo guns and allow them to be used by trained prisoners. Briefings have been given to prison representatives on the matter but there is strong opposition from some quarters.

Father Norden said he would support anything which stopped the spread of disease in prison.

Abridged from The Herald Sun, 05 November 2005. Also see ‘Safe Tattooing Sites in Canadian Prisons’, ED49, p8, and ‘Tattoo and Clean Needle Trials for Canadian Prisons’, ED51, p12.

A prison source has claimed the idea, if introduced, would have made it harder for prisoners to reintegrate themselves into society on release. "It'll just make it easier for these guys to come out looking like Angry Anderson," the source said. "What happens if you've got someone who's been tattooed by the state then changed his mind?" The source said there were other potential problems such as regulating the kind of markings permitted. "Who'll control what's tattooed on prisoners? Will you allow them to tattoo their faces? It'd be a nightmare." Prisoners already use a range of common items to make tattoo guns, sometimes sharing the makeshift implements and risking infection. The home-made devices are regularly confiscated by prison staff during cell searches and prisoners are charged for having the contraband.

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In some Australian prisons, needles are sharpened against walls so they can be shared between hundreds of inmates. Handled only by them, injecting equipment is treated as a currency - with extreme value and almost as important as the drugs. This is Australia's illegal needle prisoner exchange, a system that has led to the blood-borne virus hepatitis C flourishing among inmates at alarming rates.

tatistics from the recent National Prison Entrants’ Bloodborne Virus Survey shows 34 per cent of Australian prisoners have hep C, compared with one per cent of the general community. The report found 56 per cent of injecting drug users in Australian prisons have the virus. In Victoria, the worst affected state in Australia for the disease, hep C has reached, on average, about 58 per cent of the state’s prisoners. It is statistics like these that have experts calling for an immediate prisoner needle exchange program for Australian jails. A recent UNSW workshop on blood-borne viruses ignited the debate. Executive director of the Irish Penal Reform Trust, Rick Lines, praised the idea of a needle exchange program at the conference. “Failing to put a needle-exchange process in place is simply failing to actually recognise and implement what’s evaluated as best practice internationally,” Mr Lines said. He said the world’s first prisoner needle exchange, established in Switzerland in the early 1990s, led to a decrease in hep C and HIV/AIDS, which currently has about a one per cent prevalence rate in Australian jails. The issue in Australia is not new, but it carries controversy. In 2001, the Australian National Council on Drugs (ANCD) made recommendations that an immediate prisoner exchange program should be trialled in both adult and juvenile prisons. The body has lobbied the states on the issue ever since, arguing such a scheme would not only reduce hep C, but also prevent an outbreak of HIV/AIDS. “Prisons don’t get to choose who gets to come to their gates obviously, that’s for the courts,” said ANCD executive officer Gino Vumbaca. “But what they do have a responsibility for is to make sure that they reduce the risk of harm to these people who are in there. “So far there has only been progress in one state - the ACT. The territory’s health minister Simon Corbell recently expressed support for a trial at the ACT’s new jail to be built within the next few years. The NSW government meanwhile, has revisited the idea over and over. Despite recording rates of hep C in 40 per cent of its male inmates, and 64 per cent of females, the state is unlikely to even consider such an idea for one main reason: the stabbing of prison officer Geoffrey Pearce at Sydney’s Long Bay jail in July 1990. Mr Pearce had been escorting HIV positive prisoner Graham Farlow into an exercise yard at the notorious prison. As he opened a door to the weights yard, Mr Farlow jabbed him in the buttocks with a needle full of contaminated blood.

Mr Pearce squeezed blood out from the wound and attempted to sterilise it within minutes. But just five weeks later he was diagnosed as being HIV positive. He died in 1997. The NSW Corrective Services Department said it had a strict policy on needle exchanges in NSW jails mostly because of the incident. “The consistent answer is no,” Stuart Loveday, executive officer of the Hepatitis C Council of NSW, said when asked whether NSW would consider the option. “It's very black and white.” He said concern about the health of prison staff was the biggest barrier to a prisoner needle exchange, adding that it was an unnecessary fear. He said while the Geoffrey Pearce stabbing was “very tragic and regrettable,” it happened “under the exact same system that now currently exists within NSW prisons.” “And that is an unofficial, illegal and highly dangerous needle exchange system,” Mr Loveday said. “In some states, we have needles being hidden, sharpened against walls, being used by hundreds of prisoners. It’s a very dangerous system and it’s out of control.” He argues a controlled scheme would actually increase the safety and health of prisoners and prison staff. But there’s also one other group which stands to gain: the wider community. Mr Loveday pointed out the majority of prisoners are incarcerated for less than six months, with many inmates becoming involved with drugs for the first time while in jail. “We need to break that bridge of infection between the prison community and general community,” said Mr Loveday, who argues a trial should be held long enough so the health benefits on inmates and others can be recorded. There is also a social argument. “Needle and syringe programs save the country billions of dollars,” Mr Loveday said. “That in term has a huge knock-on effect in easing the burden on the healthcare system, not just in costs, but in terms of demand on time.” But Mr Vumbaca pointed out no country in the world will ever be drug-free. “What we’d prefer is if people didn’t use drugs,” he said. “But if they’re going to do that, then we have to make sure that they don’t exacerbate that by having lifelong illness as a result of that mistake.”

Abridged from AAP, 8 Dec 2005.

Also see: State rejects needle swap in gaols, ED46, p13, NSW government rules out gaol needle programs, ED48, p6, UK inmate takes legal action over lack of needle exchange, ED50 p36, Tattoo and clean needle trials for Canadian prisons, ED51, p12. The Hep C Review

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Louise Redsull, Max Hopwood and Carla Treloar report on research into hepatitis C treatment

urrently only 1,500-2,000 people commence hep C treatment each year in Australia, in part due to the association of treatment with debilitating physical and psychiatric side effects. Research suggests that pegylated interferon and ribavirin therapy has similar side effects to standard interferon therapy, and commonly reported side effects include fatigue, myalgia (muscle aches), weight loss, nausea, depression, irritability, headache and insomnia. A minority of people (under 1%) will experience serious side effects such as loss of vision and hearing (Fried 2002). The most cited reason for dose reduction or discontinuation of treatment is the psychiatric side effects, such as anxiety and major depression. However while mood changes are common among people in treatment, it is still rare for people to discontinue treatment. Although research has examined the clinical aspects of treatment, there is a lack of in-depth information on people’s experiences of interferon therapy and how people cope with treatment-related side effects (Hopwood and Treloar 2005). Prior research into chronic illness shows people find hearing about the experiences of others who are diagnosed with an illness or undergoing treatment can help them come to terms with their own experiences. For these reasons the NCHSR decided to conduct a study that documented a group of people’s experiences of hep C treatment.

Study intoduction This qualitative study looked at people on interferon-based therapy and was carried out in 2004 and 2005. Interviews were conducted with 20 participants who were either currently receiving or had recently completed pegylated interferon and ribavirin combination therapy. Six health care workers who were responsible for patients when they were on treatment were also interviewed. Participants included men and women ranging from 35 to 73 years. All participants were recruited from three metropolitan liver clinics specialising in the treatment of hep C in Sydney. This study does not comprise a representative sample of people in treatment for hep C, so the findings can not be generalised to all treatment experiences. People reported experiencing a variety of physical and psychiatric side effects which reduced their quality of life including flu-like symptoms, fatigue, insomnia, impaired memory and concentration, depression and irritability. Pretreatment preparation was viewed as essential by both patients and health workers. People described utilising a number of coping strategies to manage the side effects they experienced including use of painkillers and non-prescription medications, anti-depressants, support, prioritisation, working, keeping occupied and maintaining a healthy lifestyle and positive attitude. Some of these will be discussed in this article.

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All names of people whose stories appear in this article are made-up. A more detailed discussion of treatment coping strategies can be found in a report on this study due to be published by the NCSHR later this year which will be accessible from nchsr.arts.unsw.edu.au.

Pre-treatment Preparation People reported experiencing different combinations of side effects which were difficult to predict making the need for pre-treatment preparation paramount. Health workers such as Karen pointed out that patients needed to consider the impact of treatment on their daily lives and relationships. Karen described a number of issues she discusses with patients before they commence treatment during pretreatment preparation and counselling sessions. “I try to talk to patients a whole lot about, things about what makes them tick, what keeps them going, what do they enjoy doing, what are the fun things in their life? So that I know, when they’re having those patches, [we can go back to] the things we talked about in the past that you said make you feel better, so why don't we try doing those things?” Sally (a woman in her late 40’s) prepared herself for treatment based on information and advice received during these sessions. “Well, I didn’t rush into it, thank goodness. I got informed. The nursing staff here are fantastic said … It would be a good idea to organise your life so that you can optimise your living situation around these side effects”. “So I did that. I prepared, I really prepared. So I closed down my studio - that was stressful - and I packed it all together. What else did I do? I did a lot. I got, you know, everything paid up and sorted out and paperwork done. I decided that my project was to make a lovely little garden at home.” Many participants discussed using coping strategies they had learnt when combating difficult times in their lives (eg chronic illness or drug dependency). For instance Gerry (48) had lived with chronic symptoms associated with his hep C for a number of years and used these skills to help him cope with treatment. “Having lived with chronic pain for the whole of my adult life basically, I already had coping mechanisms to handle those things. I may be in a better position than some other people to cope with the treatment because I’m used to being in a debilitated state … I guess the coping mechanisms were always there, from over a long period of time.”

Keeping occupied Many people receiving hep C treatment adopted strategies to keep them occupied often setting themselves small projects to do. Loren, aged 50 altered her approach to household chores instead of carrying out a normally exhaustive domestic routine setting herself small attainable goals to give her a sense of achievement.

March 2006 Image courtesy of www.google.com/images

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n research into hepatitis C treatment

“I would just set myself tasks on a week to week basis in terms of just doing things around the home or even trying to cook a meal … So I became task-oriented and it’s as basic as just doing my washing and hanging it out, or even hanging some of it out. For me, that is obviously part of where I need to feel valued in terms of activity and achievement.” Some participants found work was a distraction from their treatment. Monica continued to work hard in her management job for the duration of her treatment despite experiencing a number of treatment-related side effects, believing that for her staying at home would have been disadvantageous. “I was very lucky that I was working and I was working hard because it kept me going - that’s another thing. You know? I don’t think I’d like to be at home doing the program and not having anything to do. I think it would be the worst thing you could possibly do; you’d cut your throat. Well, I would have.”

Support People on treatment and health care workers reported on the important role of support from partners, families, friends, work colleagues and a variety of groups during treatment. Chloe described the importance of support obtained from the treating liver clinic. She found that connecting with other

people who had previously been on treatment was more effective because it provided her with resources, experiential information and support which she could not obtain elsewhere. “Just find the people that have been through it. Because the psychiatrists and the nurses, they haven’t done it. They can only support you from an outside position.”

Conclusions People in this study experienced a variety of side effects when on hep C treatment and used numerous coping strategies to counter the problems they faced. Patients and health workers emphasised the importance of preparation before commencing treatment, gaining support and keeping occupied. Hopefully future research can assist people to generate ideas to help them cope during treatment, as well as help health workers give advice on possible coping strategies. Such information is likely to improve adherence to treatment (decreasing the number of discontinuations and dose reductions) and improve people’s quality of life while on treatment as people learn to manage side effects more effectively, therefore maximising their chances of achieving a cure.

Abridged from a preliminary research report by Louise Redsull, Max Hopwood and Carla Treloar are from the NCHSR, UNSW. References Fried, M. W. (2002). Side effects of therapy of hepatitis C and their management. Hepatology, 36(Suppl. 1), S237–S244. Hopwood, M. & Treloar, C. (2005). The experience of interferon-based treatments for hepatitis C infection. Qualitative Health Research, 15, 635-646.

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Professor David Clark continues to look at the seminal research study conducted by Professor Howard Parker and colleagues, which provided essential insights into British youth culture and the role of drugs and alcohol among adolescents during the 1990s

arker and colleagues described four distinct drug pathways that young people in their study had taken during their adolescence.

Abstainers held anti-drug attitudes, had never taken a drug, and never intended to. Former triers held fairly negative attitudes to drug use and whilst they had tried or used illicit drugs, they had no intention of doing so again. Those in transition held fairly positive drug attitudes, most had tried drugs, and all felt they might use drugs in the future. Current users held pro-drug attitudes, used one or more drugs regularly, and expected their drug careers to continue into the future. By reflecting on and reviewing their attitudes to drugs, young people could switch pathways. As young people in the study moved into adulthood, there was an increase in the proportion who became current users and a reduction in the number of abstainers. Young people in transition were more likely to use the ‘softer’ drugs such as cannabis, whereas current users had a larger drug repertoire, including amphetamines and ecstasy. However, the researchers noted that, ‘whilst current users have the most florid, risk-taking antecedents, including early smoking, drinking and sexual experiences, they do not have strong delinquent tendencies nor fit into any typology of abnormal development’. ‘…today’s young drug takers are of both sexes, come from all social and educational backgrounds and are in most other respects conventional.’ Parker and colleagues used in depth interviews to build on the pathway analysis, by providing a perspective of the actual experiential journeys their drug triers and users took during adolescence. The vast majority of the drug users had obtained their drugs from friends, or friends of friends. Direct contact with professional dealers was rare. In terms of drug initiation, interviewees stressed personal curiosity and the support, sometimes encouragement, occasionally ‘pressure’, of friendship networks. Most first time experiences were with cannabis and were benign. LSD and amphetamines and, in late adolescence, ecstasy were occasionally more problematic. The researchers argued that most young people were drug wise and they differentiated between the range of

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drugs readily available on the youth market in terms of their effects, both positive and negative. Nearly all of the sample rejected heroin and cocaine out of hand, as drugs with dreadful reputations because of their addictive potential and the world of dealers. Cannabis was viewed as a fairly safe drug, whilst amphetamines, LSD and ecstasy were more equivocally defined. The decision to take a drug involved assessing the balance between risk and possible costs against personal enjoyment from taking a particular drug. The risk assessed were in terms of stigma and censure by parents, partners, friends, teachers and the criminal justice system. Personal relationships and career opportunities might be damaged. However, whilst immediate health risks were assessed, long-term health risks were rarely assessed. In their excellent book, Parker and colleagues (1998) argued that the nature of the experience of growing up had changed in the world of the 1990s. Rapid social changes in so many aspects of everyday life had resulted in growing up ‘feeling’ far less secure and more uncertain for far longer than had happened prior to this time. ‘To grow up today is to grow up in a risk society.’ ‘The unprecedented increase in recreational drug use is deeply embedded in these other and social processes since such drug use is both about risk taking but also about “time out” to self-medicate the impact of the stresses and strains of both success and failure in “modern” times.’ The researchers emphasised that the UK drug strategy, being embedded in a ‘war on drugs’ discourse, missed the point. It was based on many misconceptions about young people and drugs. The first misconception was that young drug takers would become addicted to or disinhibited by their drugs, and become young offenders spiralling out of control into a life of crime and disorder. However, only a small minority of persistent offenders committed crimes and took drugs. Many of these young people also drank too much alcohol, grew up in care, were excluded from school, and needed psychiatric help. What was the cause of the crime? Many also committed crimes before having problems with drugs.

feature AUSTRALIAN DRUG USE TRENDS According to the latest National Household Survey on Drug Use in 2004 the number of people who used an illicit drug in the previous 12 months has continued to decrease since 1998:

The vast majority of young people who took drugs did not follow this path. Also, there were few signs of dependency in the recreational scene of this study. Another government misconception was that young people were pressured into taking drugs. However, participants in this study insisted that they made their own drugs decisions for which they took responsibility. The notion of peer pressure was a source of resentment to many young people when expounded by adults delivering drug education. Parker and colleagues also argued that young people’s drug use had become entangled in the wider moral panic about, and blaming of youth, for society’s problems. They emphasised that continuing the ‘war on drugs’ and ignoring the reality of young people’s drug taking was resulting in a neglect in dealing with reducing the harms and risks of drug use. They pointed out the need to:

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accept that drug use occurs and treat the user as a citizen

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try and help assure that street drugs are quality tested

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In 1998 over 20% of people reported having used an illicit drug in the previous 12 months.

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In 2001 around 17% of people reported having used an illicit drug in the previous 12 months.

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In 2004 just over 15% of people reported having used an illicit drug in the previous 12 months.

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In regard to marijuana use a similar continual decline was reported:

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In 1998 over 17% of people reported having used cannabis in the previous 12 months.

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In 2001 just under 13% of people reported having used cannabis in the previous 12 months.

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In 2004 just over 11% of people reported having used cannabis in the previous 12 months.

Other information from the 2004 National Household Survey on Drug Use and other reports shows that:

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The average age of people trying illicit drugs for the first time increased from 18.6yrs in 2001 to 19.4yrs in 2004.

help young people share information and experiences about drugs, in particular bad experiences

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create a situation where young people trust the information (including scientific) on drugs provided by older people

Since 1998 the level of recent heroin use in Australia has decreased from 0.8% of the population aged over 14 years to 0.2%.

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The level of fatal heroin related overdoses in Australia has declined from a peak of over 1,100 people in 1999 to less than 400 today.

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The level of HIV amongst Australian injecting drug users – estimated to be between 1% - 2% is one of the lowest in the world.

create a situation where young people feel that they can come forward and talk about their drug problem without censure.

Professor David Clark is from the Psychology Dept, University of Wales, Swansea, UK. In his previous article carried in ED51, Professor Clark looked at research that provided insight into British youth culture and the role of drugs and alcohol among adolescents during the 1980s. Recommended reading: ‘Illegal Leisure: The normalisation of adolescent recreational drug use’ by Howard Parker, Judith Aldridge and Fiona Measham: Routledge, 1998. Abridged from www.dailydose.net/

Image courtesy of www.google.com/images

Australia’s National Drug Strategy encompasses a balanced approach of supply, demand and harm reduction initiatives. Since 1998 there has been an additional $1.4 billion of Federal funding allocated to address drug and alcohol problems in Australia, with a substantial amount of this funding being provided for the Illicit Drug Diversion Initiative which seeks to divert drug users from the criminal justice system to the drug treatment system. It has also been estimated by the ANCD that at least 50% of this additional funding is being used to provide education, prevention and treatment services for drug users.

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Safer Injecting Procedures 28

A virus is a tin y organism that can liv e within body cells. If enough blood cells containing a vir al infection pass into y our bloodstream then y ou will become infected. Edition 52

needle or syringe mixing w ater

This means the works must not ha v e an y one else AND neither the drugs equipment ha v e been in contact else's:

been used b y nor injecting with an y one

You can only a v oid this b y preparing and giving the injection carefully, making sure that when the needle goes into y our v ein, nothing y ou are using or injecting could possibly ha v e been contaminated b y a drop of someone else's blood (ev en one that w as too small to see).

March 2006

Av oiding Vir al Infections Pt1

These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.

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needle or syringe mixing w ater spoon filter.

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Information reproduced with permission from the Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation. www.adf.org.au tel: 03 9278 8100

The best protection is to ha v e y our own spoon and mixing w ater cup (and nev er let an y one else use them). Wash them before and after use in hot soap y w ater.

been used b y nor injecting with an y one

This means the works must not ha v e an y one else AND neither the drugs equipment ha v e been in contact else's:

The Hep C Review

feature FIRST DOCUMENTED IMPLICATIONS - AN CASE OF HEP C ORGANISATIONAL INFECTION FROM A OVERVIEW PUBLIC ublic concern surrounding inappropriately discarded needles and the transmission of HIV and hepatitis C continues to be one of the biggest NEEDLESTICK problems facing Australia’s needle & Syringe program. Anex CEO John Ryan said that while some would dismiss INJURY those concerns as being disproportionate to the actual

he school of Medicine at Spain’s University of Barcelona wrote to the Clinical Infectious Diseases Journal in July 05 outlining the world’s first public transmission of hepatitis C from a needlestick injury. What does this case mean to needle and syringe programs and to the way in which NSP workers engage their local community? Case Study: In a letter to the Clinical Infectious Diseases Journal 2005:41 (1 July) doctors outlined the case of a 64-yearold woman who accidentally pricked her hand with a discarded needle while she was cleaning a cemetery mausoleum. Five hours later the woman was admitted to an emergency department where antiretroviral prophylaxis (against HIV) was given. A blood analysis was performed and she received a first dose of hepatitis B vaccine. The findings from that blood analysis showed that her renal function and liver enzymes were normal. She returned negative tests for hepatitis B, HIV and HCV antibodies, and HIV and HCV were undetectable in her blood. When she attended her scheduled visit three months later the woman complained of severe weakness. She tested positive for HCV antibodies and her liver enzyme levels had increased. Control analysis (PCR) was performed 15 days later to confirm the diagnosis. The woman was given treatment with a post-treatment PCR test showing negative results and HCV RNA remaining undetectable 24 weeks after the end of treatment.

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Abridged from Anex Bulletin (vol 3, ed 4)

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level of risk, this case highlights the need for all health settings and needle & syringe programs to be responsive [to community concerns]. “The doctors who issued this report rightly pointed out the necessity for strict follow-up when a person has been injured by discarded needles,” he said. “The response from the health care sector therefore needs to be thorough, with appropriate pre- and post-test counselling to ensure that people attend their follow-up monitoring or treatments visits. “It also means that needle & syringe programs need to balance public messages about the low level of risk while accepting that the possibility of infection is real.” Anex has altered its public messages about transmission since the report was released. “Traditionally, we have been able to say that, worldwide, no member of the public has ever been infected with HIV or hepatitis C after a needle stick injury,” he said. “It is a comment we can still make if we are only talking about HIV but it is no longer true if we are discussing hepatitis C, or even just general public fears.” “What we are now saying is that, while the risk of transmission is extremely low, people should be aware there is a risk and avoid contact with discarded needles.”

Abridged from Anex Bulletin (vol 3, ed 4)

feature IMPLICATIONS - A WORKER PERSPECTIVE

NEEDLE PROGRAM BETTER THAN BEING IN DENIAL

e have always known that the chance of acquiring HCV from a community-based needlestick injury is extremely low, but nevertheless greater than zero. The fact that a single case has occurred in no way contradicts this. However, community understanding of risk can vary, and more detail is now required to communicate the very low risk that injecting litter poses. This event can be seen as a reminder to NSPs of the importance of having explicit and comprehensive strategies in place. We can no longer say “this has never happened”, and rely on the unspoken implication that it will never happen in the future, either. With a published case of HCV acquired via a community-based needlestick injury, we can expect that this fact will impact on the perception of risk in the community. This will happen in spite of the fact that actual risk has not changed. NSPs need a comprehensive approach to manage community perceptions of safety around discarded needles and syringes. Depending on resources, this could involve:

Strategies to reduce the amount of injecting litter. This will include liaising with local government about placement of public disposal units. Rapid response to local resident and trader concerns. Demonstrate that NSPs are part of the solution to improper disposal, rather than the cause. Using published research results to back up assertions made about risks. Offering training in sharps handling.

NSPs function best when they are supported by their local community. Managing perceptions of risk around injecting litter forms an important part of creating this support. With a wealth of research evidence behind us, we are well placed to demonstrate that NSPs play a vital part in preventing blood borne virus transmission.

Andy Sinclair, Community Education Worker, Health Works, Western Region Health Centre, Footscray VIC.

ho would have thought this government would be soft on drugs? It's funded thousands of outlets that supply clean needles for injecting drug users

It is one of the success stories of the Howard Government and one of its best-kept secrets. Canberra contributes funding to enable more than 3000 outlets, including drug treatment centres, hospitals, health centres, chemists and vending machines to dispense clean needles to injecting drug users, as well as provide counselling and referral to treatment. Australia has earned recognition around the world for the effectiveness of this program, which dates back to the 1980s, in limiting the spread of HIV-AIDS and hepatitis C. So successful is it that the Government expanded funding by almost one-third to $38.7 million for the four years to the end of next year. The states and territories administer the scheme, as well as kicking in their own money. The Government is very coy about it. It conflicts directly with its rhetoric about zero tolerance of drugs. John Howard regularly attributes a substantial fall in heroin-related deaths to its "tough on drugs" strategy. The clear success of this policy, he said two years ago, "means that there should be no weakening, such as the federal Labor Party's permissive approach to heroin injecting rooms". The distaste people have for providing needles to drug users needs to be balanced against reality. That is, according to a survey by the Australian Institute of Health and Welfare, that 313,500 Australians - almost 2per cent of the population have injected drugs. If sterile needles are not readily available, there will be greater use of shared needles, which are the main means of contracting hepatitis C, which causes liver failure, and one of the means of spreading HIV. The [Commonwealth] Health Department recognises the importance of getting the message out. The $130 million spent by state and federal governments between 1991 and 2000 prevented an estimated 25,000 cases of HIV and 21,000 cases of hepatitis C, saved 4590 lives and reduced health spending by between $2.4 billion and $7.7 billion. There is near-unanimous agreement among professionals in the health and drug areas about the effectiveness of the Needle & Syringe Program (NSP). This includes the Australian National Council on Drugs, the principal advisory body to the Government on illicit drugs. For all of the Government's claims about the success of law enforcement, the weight of evidence says otherwise. If zero tolerance worked there would be no need for NSPs. Governments should continue to look for ways to stop the flow of damaging drugs. But until they succeed, they should devote more resources to doing what actually works curbing the most harmful effects of drug use. That includes in prisons, where an estimated 70 per cent of women and 45 per cent of men in Australia have hepatitis C but where needle programs are not available. This is much preferable to being in denial.

Image courtesy of www.google.com/images

Abridged from The Australian, 23 February 2006.

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Alcohol has been shown to worsen hepatitis C and this article will be of special interest to many readers.

ore recently, the revival and expansion of the Australian wine industry has seen vintages and varietals that challenge the world's finest. But even this latter-day veneer of respectability cannot disguise the fact that alcohol remains at the root of some of the nation's most serious health and social problems. According to the Australian Institute of Health and Welfare, one in 10 Australians drinks alcohol at levels considered risky or of high risk in the long term. One in three people aged 14 and over consumes alcohol in a way that puts them at risk in the short term. The most recent Victorian Population Health Survey shows that 16 per cent of Victorian men are at risk from excessive alcohol consumption. But perhaps the most frightening assessment was made by Curtin University's National Drug Research Institute late last year. It found that underage drinking has increased steadily over the past decade and now results in one death and 60 hospital admissions in Australia each week. Excessive alcohol use is linked to about 3,700 deaths a year. It costs the community billions of dollars. The medical implications of excessive alcohol use take years to spin out. More immediate is the trail of damage done on the roads, through domestic violence, as a trigger for suicides and accidental deaths. Binge drinking, especially among girls, has become a recreational pastime. Better education on alcohol consumption is a community-wide responsibility. Governments, in particular, have additional responsibilities as they reap the excise rewards that flow from every glass and bottle consumed. Other responsibilities include advertising regulation and laws prohibiting sales to those under 18. But manufacturers and marketers also must bear some responsibility for the products they make and promote.

That is why the proposed introduction of a standard drinks logo is a welcome development. As revealed in The Sunday Age, a partnership between government and the alcohol industry will soon see the introduction of standard symbols on liquor, wine and beer packaging. These will denote the number of standard drinks in a particular container. The proposal was expected to be signed off by federal and state ministers, together with industry leaders. The aim is to improve drinkers’ understanding of how much alcohol they are consuming. It is intended that the new scheme will be in place across Australia by the end of next year. Some brewers are expected to implement the new logos within three or four months. Other measures to follow will include a national alcohol strategy and steps to tackle the rise in underage drinking. The standard drinks logo scheme will be voluntary, but in effect all producers have signed on to it through membership of their respective industry bodies. It is essentially an educative rather than a proscriptive program. But it is also fundamentally different from the regime of warnings that apply to tobacco. In that respect, government has baulked at the notion that alcohol is akin to tobacco or other drug use. That, of course, is in the industry's interests. Warnings that suggest alcohol is addictive or could lead to liver disease or even kill people do nothing for a product’s image. In fairness, the milder approach reflects the prevailing community view that there is such a thing as responsible alcohol consumption, as opposed to tobacco use, which is considered harmful at any level. That view may change in time. But for the moment, any step that discourages excessive alcohol use must be applauded.

Abridged from The Sunday Age, 23 October 2005 via www.dailydose.net/ Also see Alcohol use progresses hep C related cirrhosis, ED52p42, Cutting Back The Booze, ED50, p26.

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Given the awareness that people with hepatitis C fare better when not carrying excessive weight, the following article from the Sydney Morning Herald will be of special interest to readers.

aby boomers and Generation-Xers are stacking on weight much more rapidly than people born in earlier eras. If current trends continue, more than a third of people now in their mid-20s to mid-50s will be obese by 2013, new research shows. The Adelaide study, based on annual health interviews with more than 3000 people, shows a gradual increase in the weight-to-height ratio of both age groups during the early 1990s, which accelerated rapidly at the end of the decade and is still climbing. Among the baby boomers, men and women showed a similar pattern of weight gain, with just over a quarter obese in 2003. That could rise to 40 per cent by 2013 if they continued to gain weight at the same rate, said Tiffany Gill, an epidemiologist at South Australia's Department of Health. Among the Generation X group, more women than men were likely to enter the obese category, a body mass index of 30 or more, Ms Gill said. The projections indicated a third of them would be obese after another decade, compared with one in five Generation X men. The results back up recent statistics from the Australian Longitudinal Study on Women's Health, which found women in their 20s had put on an average of five kilograms in just seven years. Excess weight is linked to the early development of heart disease, diabetes, asthma, arthritis and pregnancy complications. Because the randomly selected participants in the Adelaide study told researchers their weight and height rather than having them independently measured -it was likely an even higher proportion might be truly obese, said Ms Gill, whose study is published in the Australian and New Zealand Journal of Public Health. Men typically overestimated their height, while women usually understated their weight, she said. Ms Gill said public health initiatives against obesity had focused mainly on the issue among children. Her survey was the first to indicate that the problem was also worsening dramatically among young adults. "The kids are in the schools and you can target things at them," Ms Gill said. "It's harder when people are out at work or in the community."

Images courtesy of www.google.com/images

A separate study, carried out by the University of Melbourne, found people were a third less likely to get adequate exercise if they lived in the poorest districts, defined as those with the highest proportion of households living on less than $400 a week. The study leader, Anne Kavanagh, also found clear differences between districts in the likelihood of people walking, cycling or swimming, though these were not always linked to the affluence of residents. Associate Professor Kavanagh, whose report was published in the Journal of Epidemiology and Public Health, said future research should look at the availability and quality of walking and cycling paths, lighting and safety, parks and swimming pools to determine whether these made a difference to exercise patterns.

Abridged from the Sydney Morning Herald, 22 October 2005. Also see: Lose weight - and keep it off, ED51 p21, Hazardous waist, ED51 p22.

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March 2006

article writing competition

HEPATITIS C, INTERFERON AND THE MEDICAL PROFESSION

hen I cleaned up from drug use five years ago the reality of having hepatitis C came home to me in a way it had never before. My liver counts were high and I was encouraged to go on interferon treatment by a number of specialists. However, I found that these doctors had very little information to offer and with my questions regarding depression, anaemia and relapse unanswered I decided to give treatment a miss. Frustrated with uncommunicative medical professionals I sought to talk to others with the virus about their experiences of, and decisions around, treatment. I interviewed twenty people with hepatitis C, nine of whom had been through interferon therapy. A feeling shared by interview participants was that unless they took on interferon treatment the medical profession had nothing to offer them. As Mathew put it: “Have interferon or have a horrible life”. The majority reported having made changes to their lives and diets; this was generally through trial and error or recourse to books and alternative specialists. Not one person had been offered advice by a medical professional on diet, lifestyle or stress management; all areas that, with modification, can help reduce hepatitis C symptoms. Physicians’ perceived indifference to the desire to ‘live a good life while being ill’ often led to frustration and discontinued medical visits. For those who hung in there, it was evident that the amount and quality of dialogue between doctor and patient was a critical factor in the decision to undergo, and the experience of, treatment.

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The best results were achieved when physicians acknowledged the severity and importance of side effects; thus allowing the patient to prepare emotionally, financially and socially for the treatment regime. In a desire for information and support around the day-today aspects of living with hepatitis C, half of those I spoke to consulted alternative practitioners. Within these consultations often a detailed case history is taken and information given on ways to help alleviate symptoms, to cope on a day-to-day level, and care for the liver. However, alternative treatments are often costly and individuals spoke of foregoing basic necessities in order to access these therapies. From my own experience and in talking to others I believe that there is a need for increased dialogue in the medical encounter and for recognition of the patient in their entirety, not just as a vector of disease. The efficacy and adherence to interferon treatment could be greatly improved if individuals’ concerns were attended to and the social, contextual and emotional locality of the patient taken into account. It would help patients if they were honestly informed of what to expect to enable them to prepare and hopefully gather the support around them that they need. The use of subsidised alternative treatment modalities in a complementary fashion with interferon is likely to provide a more comfortable treatment experience, thus improving adherence and in some cases an increased chance of a sustained response. This can only be a positive outcome for all.

Magdalena, NSW

article writing competition

hat is the current state of access to and quality of Hepatitis C treatment? I do not really know. I come from the Mid North Coast and have chosen not to pursue the current medical treatment. Two years ago when referred to a Gastroenterologist I was offered treatment, but declined. I wanted a liver biopsy to see what the state of my liver was but without committing to treatment, I was told that was impossible. I have had Hep C for about 33 years. The local doctors in the little country town I live in have been overall supportive, caring and reasonably knowledgable about Hep C. In fact I owe my initial diagnosis to them. I knew nothing about Hep C and would never have thought to have myself tested for it. They also referred me to the NSW Hep C Council. I am very grateful to them. I have chosen to treat myself with complementary therapies – especially herbs, vitamins and minerals, kinesiology and gestalt therapy. I am a staunch supporter of these therapies and have been studying herbalism for 10 years. I believe the wholistic approach is vital to the healing of any disease or imbalance in the body. When first diagnosed there was a voice screaming inside my head – if you want to get rid of your Hep C then heal your anger. So the last 8 years have been a journey. A journey where I have had to deal with childhood abuse, the trauma of a severe accident when I was 17, drug addiction and a part of myself that was set on self destruction. I know many others up here with Hep C and so many of them share a history of abuse and addiction.

Images courtesy of www.google.com/images

I have a dream. I would love to see treatment centres which have access to a range of therapies not just current medical ones. I am not denigrating or denying the validity of western medicine – it is an approach that works for many. I would like to see a facility where complementary and modern therapies co-exist. A centre where people can be informed of the wholistic nature of illness and can make an informed choice as to what approach they take. A wholistic approach embraces not only the physical but the mental, emotional and spiritual as well. I believe that for true healing and well being such an approach is necessary. Imagine a centre fully funded where anyone could have access to not only interferon/ribavirin but also to a range of psychotherapies and natural therapies. A place where they could have counselling and be empowered to make an informed decision as to what treatment or combinations of treatment would suit them best. I know that all these treatments are out there in the community. Yet many people either do not believe in them, do not know about them or simply cannot afford them. Personally it has cost me (and continues to) a fortune to pay for the therapies I have chosen. That has been my choice and I still believe it was the best one for me. My dream is for the old and the new to be able to work together, to complement one another and for the funding to be available so that everyone can choose their own optimal path for healing.

Jewells, NSW

The Hep C Review

Edition 52

March 2006

article writing competition

TREATMENT IN AN ISOLATED AREA T

his is my experience of undergoing treatment while living in an isolated area. It began in 1999/2000 as part of the Aushep 8 trial. I was part of a group receiving a high dosage of non-pegylated Interferon, combined with Ribavirin. This stage lasted for three months. I was deemed a non-responder and removed from the trial after three months, but was offered a further nine months treatment at the standard dosage. I did not clear the virus, in fact my viral load went from medium to ‘off the scale’, and it took me a long time to recover. I believe that my immune system was weakened, and I became very vulnerable to other illness. I drove 250 kms to Canberra once a week on my own for the first three months, then every couple of months for blood tests and medication. I was constantly exhausted from travelling and trying to do too many things. I had no one to help me and no local medical support. The decision to have treatment was an act of desperation. I had a long struggle with depression and blamed my disintegrating life on hep C. I did not even realise I was depressed, as it had been with me for so long. My second treatment experience began in 2004. Due to my participation in the trial, I was offered 48 weeks of combination therapy with pegylated Interferon also managed from Canberra. I approached the second treatment with a very different attitude. A good friend to help with the driving made a huge difference, and I believe contributed greatly to the positive outcome. She also looked after me when I needed help.

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I devoted myself fully to giving it the best possible chance. I knew that once treatment began it would be very difficult to make decisions at times and I made sure I was clear in my motivation and goals. I had a very supportive GP locally who shared some of the work and made trips to Canberra less frequent. I returned a negative result to an end of treatment PCR test which was three months ago. Both times I received unexpected gifts from the treatment. The first time helped me to deal with my depression by making my mental patterns hugely obvious. I did not take anti-depressants. I had a long practice of regular meditation and some experience with psychotherapy and I used the period to delve deeply into my past and examine my life. The second treatment gave me time to read, educate myself and be unexpectedly creative. I think that the decision to try treatment should not be taken lightly. Clear motivation, support and a positive attitude are essential as is a constructive use for the mental activity. My mind was like a blue heeler in a small backyard. It can be a very useful and valuable experience. As my GP wisely said; “You’ve got to throw everything you’ve got at it!”

Dinesh

feature

The Australasian conferences are held every two years and remain a key intiative for informing and guiding the hepatitis C responses in Australia and New Zealand. Stuart Loveday reports back on the most recent conference. Federal Health Minister, Tony Abbott, launched this major conference in Sydney on 20 February with the welcome announcement that liver biopsy will no longer be one of the criteria to receive government funded pharmaceutical treatment for hepatitis C. With more than 225,000 people in Australia having been diagnosed with hepatitis C and with so few people having undergone treatment, this is a welcome step that will free up one of the barriers to accessing antiviral therapy. Biopsy may in some cases still be clinically necessary, as it is still the best marker of the extent of liver damage. Treatment was a main theme of the conference and while it is likely that interferon-based therapies will remain the cornerstone treatment option, researchers spoke optimistically of forthcoming treatment alternatives – still some years away. New ways of treatment models were examined – recognising the need to expand GP prescribing, hopefully to enable specially trained general practitioners to initiate treatment and to involve alcohol and other drug clinicians to become more involved in treatment workup and management and to expand the roles that nurses play. It was acknowledged that the current public hospital liver clinic-based models will soon become very overburdened as treatment numbers grow, so it is essential to plan now. New and better ways of preventing transmission of hepatitis C remain arguably the biggest challenge within the hep C epidemic. Speakers and participants discussed the ongoing roles that needle and syringe programs and peer education play in preventing transmission among people who inject drugs. This conference had a welcome and strong hepatitis B theme and the complexities of detecting, managing and treating those people with chronic hepatitis B infection were seen to be even greater than for hepatitis C.

Images courtesy of www.google.com/images

Hepatitis C in prisons was understandably a major theme and the additional challenges of preventing transmission and treating inmates within custodial settings were discussed. Modelling showed that the increased treatment access for prisoners with hepatitis C was a vital need. Throughout, people with hepatitis C and their organisational representatives and researchers spoke of the need for ongoing and enhanced community involvement in all aspects of the hepatitis C response. Once again, it was agreed it is absolutely vital to reduce the levels of discrimination and to increase healthcare worker and general community knowledge about hepatitis C. A study from Queensland, thought to be applicable for all Australia, noted that medical practitioners have relatively low levels of understanding and overwhelmingly preferred their knowledge to come in the form of factsheets. The particular issues faced by Indigenous Australian communities in prevention, care and treatment matters were compared with relative hepatitis B successes in New Zealand and Alaska, USA. While it was clear that increased access to treatment will not contribute significantly to reducing the numbers of people with hepatitis C, it was agreed that it was vital to prevent further disease progression and thus save both personal costs and health costs to society as a whole. The conference was followed by a day-long Australian Hepatitis Council-sponsored Research Forum which gave summary overviews of current research in the social, clinical, virological and epidemiological streams.

Stuart Loveday is executive officer of the Hepatitis C Council of NSW.

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promotion NSW ISOLATED PATIENTS TRAVEL & ACCOMMODATION ASSISTANCE SCHEME (IPTAAS)

AFFORDABLE ACCESS TO INTERNET INFORMATION Infoxchange Australia is a national notfor-profit social enterprise focusing on community development using Information Technology as the primary tool. Green PC Green PC is a social enterprise initiative that upgrades computers collected through agreements with government departments and other large corporate organisations to roll over their redundant computers to Infoxchange Australia. Refurbished internet-ready personal computers are provided to low income individuals, families and communities on a national basis from out two centres located in Brisbane and Melbourne.

Internet Services Infoxchange Australia also provides a premium internet service that can be tailored to meet your needs. From dial-up to broadband, a package can be customised to any individual or organisational requirements.

User Support & Help Desk We also provide technical support to assist clients with the process of getting online. Support provided includes setting up the required hardware and software and troubleshooting access difficulties. A telephone help service is provided for those who are familiar with the setup of their own computers.

For more information, call Infoxchange Australia on 1300 306 645. We will happily speak with you about your needs and if you are interested, we can recommend a package that suits your requirements.

The Hep C Review

Edition 52

March 2006

IPTAAS was established in the 1970s to provide financial assistance to people in isolated and remote rural areas of Australia who needed to travel to access specialist medical treatment. Thousands of people across NSW will now benefit from changes made by the government and due to come into effect on 1 July 2006. NSW had the worst record among states and territories for reimbursing sick patients for long distance travel to treatment centres. But after heavy lobbying from key health groups - including the Hepatitis C Council of NSW - Premier Morris Iemma recently launched a plan to halve the minimum distance for assistance from 200km to 100km. Other changes to the scheme include an increase in the petrol allowance to 15c per km and better integration of health related transport to achieve improved coordination and a more efficient service.

For more information, please phone the NSW Hep C Helpline (see page 52).

promotion THE HEPATITIS C INFORMATION CLEARINGHOUSE The ’Hepatitis C Clearinghouse’ is an initiative of the Consortium for Social and Policy Research on HIV, Hepatitis C and Related Diseases, a NSW Health funded collaboration comprising university and health service partners, including the Hepatitis C Council of NSW. It aims to build research capacity across the HIV/AIDS, hep C and illicit drug use sectors in NSW. Launched in February 2005, the Clearinghouse provides links and access to Australian resources and documents that support research, policy and practice relating to HIV/ AIDS, hepatitis C and illicit drug use. A central point of access to material housed in university, government, community and other locations is intended to facilitate resource sharing across the sector along with greater understanding of the necessary links between research, policy and practice. The Clearinghouse contains: Peer reviewed articles Conference presentations Technical reports Government and non-government policy and evaluation documents Government and non-government policy program submissions Community and mainstream media items Health promotion materials and campaigns Training and professional development resources Academic theses Organisational websites

This site is dedicated to the many individuals with this often debilitating virus, and to increasing public awareness of hepatitis C through sharing music and art, and the public voicing of their very valid opinions. The main focus for the Lounge is to promote awareness that life does not stop because of hep C and that none of us should feel embarrassed about our pasts - when we were, and are, part of an historical time of social experimentation and experiences. To feel shame at having experimented with such things not only creates guilt and sickness but takes away a huge part of our lives. It covers up who we are and what we have all survived and disregards our great abilities in overcoming personal adversity. We hope the information, artists and musicians you are able to view or to link to through this site will assist in helping to dispel the stigma that individuals and their families face while living with HCV.

Annual reports

THE AUSTRALIAN HEP C LOUNGE

http://theconsortium.nchsr.arts.unsw.edu.au/ Clearinghouse/search.htm

This independent and valuable project is an initiative of people from the online hep C community. Visit the Lounge today: www.hiphepcats.com/

HAVE YOU RECENTLY CONTRACTED HEPATITIS C? Would you like to help with hep C treatment research? The Australian Trial in Acute Hepatitis C (ATAHC)* The National Centre in HIV Epidemiology and Clinical Research is running a national study to look at outcomes of people recently infected with hepatitis C, and the possible benefits of treatment at this time. If you have been recently diagnosed with hep C (in the last 6 months) and believe that you might have been infected within the last year or two, and you would like to know more about this study, please contact the study coordinator Barbara Yeung on (02) 9385 0879. If you live in NSW, you can also phone the NSW Hep C Helpline on 1800 803 990 *This has been approved by the St Vincents Hospital Human Research Ethics Committee. Ref #H03/074

The Hep C Review

Edition 52

March 2006

membership news

Here we highlight items of particular interest for members and the exclusive benefits of financial membership.

membership

In Member News, our bulletin which is mailed under separate cover to all financial members, you’ll get the scoop on recent and upcoming happenings, and learn how to make the most of your Council membership.

Your early response to Organisational and Professional member invoices mailed in December has been very pleasing. Thank You. Please help us to keep our database current and avoid costly postal errors by advising us of changes to relevant personnel and contact details.

MEMBER NEWS . . . . In the Autumn edition of Member News, please watch for: >

Comments from a member who was a sponsored Council delegate to the 5th Australasian Conference on Viral Hepatitis, and the Australian Hepatitis Council’s Research Forum

The first in our new series “Getting to Know Your Management Committee”, where we feature profiles of recent additions to the MC

Remember – all memberships (including zero fee category) require annual renewal, so please keep them coming. It’s now easier than ever, with our secure online facility. Just go to our website www.hepatitisc.org.au and click on the membership link. If using a hard copy application or renewal form, please complete ALL relevant sections of the membership form, sign and forward the entire form to us. Please make out cheques or money orders to . . . HEPATITIS C COUNCIL OF NSW MEMBERSHIP

Unsure of your membership status? Phone us on 02 9332 1853 or email hccnsw@hepatitisc.org.au and we’ll be happy to let you know.

Were you an “Early Bird”? Our 2006 membership year began on 1 March and we’d like to thank all those members who responded to our early bird appeal and renewed before the due date, thereby entering the draw for our book prize. Five lucky members (a diverse group including a women’s rehab service and a complementary therapist) have each won a copy of Professor Geoff Farrell’s highly-acclaimed book “Hepatitis C Other Liver Disorders and Liver Health – A Practical Guide”.

DO YOU KNOW THAT YOU CAN MAKE A DONATION TO THE COUNCIL ONLINE? Tax deductible donations ($2 and over) are very gratefully received and can be made either in conjunction with membership payments or separately, at any time.

The Hep C Review

Edition 52

March 2006

promotion

Council profile

INTRODUCING TERESA CLONAN PROGRAMS DIRECTOR

How did you come to work for the Council?

What are your interests outside of work?

Before coming to the Hep C Council of NSW, I worked at ACON for three years in their Western Sydney Branch, and previous to that I worked for about ten years in the youth health sector in both Western Sydney and South Australia. I had always heard good things about HCCNSW, and so when this position came up, it seemed like a great opportunity.

Sleeping (I’m writing this at 7am on the train to work!), photography, camping, gardening, hanging out with friends, all the usual things!!

What's your professional background? My qualifications are in Adult Education and Sociology, but most of my work experience has been in community development, community education, health promotion, group work/ training facilitation and a little bit of teaching in the TAFE sector.

What are you working on currently? HCCNSW is currently undergoing both a Quality Improvement Review and a Strategic Planning process. These processes involve a great deal of staff, stakeholder and member involvement. My focus at the moment is working closely with our reviewers, consultants and staff to make sure both of those processes go as smoothly as possible!

What are your favourite books? ‘The Passion’ by Jeanette Winterson, it’s a love story with a twist set mostly in Venice during Napoleon’s rule, where the main protagonist is a cross dressing croupier.

Any wise thoughts? My Nanna (who was much wiser than me) once said to me, “even if you’re on the right track, you’ll get run over if you just sit there.” I’ve taken on this advice wholeheartedly – I’m not very good at sitting still!

HCCNSW

TELL YOUR TREATMENT STORY AND HELP RAISE HEP C AWARENESS As part of an ongoing commitment to hepatitis C in Australia, Schering-Plough hopes to increase awareness and understanding of the issues affecting people living with hepatitis C. To achieve this, we are looking for people with hepatitis C who have had successful treatment outcomes to tell their story.

If you would like to share your experiences and help break down the stigma associated with hepatitis C, we'd like to hear from you. All enquiries will be dealt with in the strictest of confidence.

Please contact Nicki Sambuco on 02 8424 8522 or nsambuco@porternovelli.com.au for further information.

The Hep C Review

Edition 52

March 2006

research update ALCOHOL USE PROGRESSES HEP C RELATED CIRRHOSIS UK - Evidence in the latest issue of Clinical Gastroenterology & Hepatology shows a worsened outcome for those with chronic hepatitis C and concurrent alcohol use. A convincing, yet inconsistent, pattern has emerged that demonstrates increased progression of hepatitis C-related liver disease with heavy alcohol use. Dr Sharon Hutchinson and colleagues from England quantified the effect of alcohol on cirrhosis risk in patients with hepatitis C. The research team performed an analysis of 20 articles, involving more than 15,000 hepatitis C positive persons, published between 1995 and 2004. The team explored the relationship between advanced liver disease and the consumption of alcohol. The researchers found that the risk of hepatitis C-related liver disease associated with heavy alcohol intake increased with severity of the outcome. Dr Hutchinson's team concluded, "The evidence overwhelmingly shows a worsened outcome for those with chronic hepatitis C and concurrent alcohol use." "Studies varied widely in their definition of significant alcohol intake, and so the true threshold above which alcohol accelerates hepatitis C disease progression remains uncertain." "Alcohol consumption should be minimised as much as possible in those who have chronic Hepatitis C until a safe threshold is more definitively determined."

Clin Gastroenterol Hepatol 2005: 3(11): 1150-9

Abridged from www.hcvadvocate.org

CANNABIS SMOKING AND HEPATITIS C Cannabinoids present in Cannabis sativa (marijuana) exert biological effects via cannabinoid receptors CB1 and CB2. We recently demonstrated that CB1 and CB2 receptors regulate progression of experimental liver fibrosis. We then investigated the impact of cannabis smoking on fibrosis progression rate in people with chronic hepatitis C. Two hundred and seventy people with chronic hepatitis C of known duration undergoing liver biopsy were studied. Demographic, epidemiological, metabolic, and virological data were recorded, and detailed histories of cannabis, alcohol, and tobacco use over the span of hepatitis C virus infection were obtained. Fibrosis stage, steatosis, and activity grades were scored according to Metavir system. People were categorised as non-cannabis users (52.2%), occasional users (14.8%), or daily users (33.0%), and the relationship between cannabis use and fibrosis progression rate or fibrosis stage was assessed. On analysis, six factors were independently related to a fibrosis progression rate greater than median value of the group: daily cannabis use, Metavir activity grade A2 or higher, age at infection of more than 40 years, genotype 3, excessive alcohol intake, and steatosis. Daily cannabis use was also an independent predictor of a rapid fibrosis progression rate. Finally, severe fibrosis (F3) was also predicted by daily cannabis use, independently of Metavir activity grade, excessive alcohol intake, age at liver biopsy, steatosis, and tobacco smoking. In conclusion, daily cannabis smoking is significantly associated with fibrosis progression during chronic hepatitis C. People with ongoing chronic hepatitis C should be advised to refrain from regular cannabis use.

Daily cannabis smoking as a risk factor for progression of fibrosis in chronic hepatitis C. Hézode C, RoudotThoraval F, et al. Hepatology Volume 42, Issue 1, Pages 63-71

Study abstract

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The Hep C Review

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March 2006

research update COFFEE AND TEA MAY LOWER CHRONIC LIVER DISEASE RISK USA - A recent issue of Gastroenterology finds that coffee and tea drinking decreases the risk of clinically significant chronic liver disease. Coffee drinking has been suggested to protect against liver injury, but it is uncertain whether this is of clinical significance. Dr Constance Ruhl and Dr James Everhart from Maryland examined the relationship of coffee and tea consumption with the incidence of hospitalisation or death from chronic liver disease. The research team assessed participants in the population-based, first National Health and Nutrition Examination Survey from 1971 to 1975. Participants were asked about coffee and tea consumption, which was categorised as less than 1 cup, 1 to 2 cups, and more than 2 cups per day. A second analysis included persons who, from 1982 to 1984, were asked more detailed questions on coffee and tea drinking. The team reported that participants were followed through from 1992 to 1993 for a hospital or death certificate diagnosis of chronic liver disease or cirrhosis. Among 9,849 persons followed for a median of 19 years, the researchers found that the cumulative incidence of chronic liver disease was about 1%. Analysis showed that those who drank more than 2 cups per day had less than half the rate of chronic liver disease as those who drank less than 1 cup per day. The team noted that protection by coffee and tea was limited to persons at higher risk for liver diseases. The higher risks for liver disease were from heavier alcohol intake, overweight, diabetes, or high iron saturation. The team further assessed 9,650 participants who provided detailed drink information in 1982 to 1984. Among these participants, the team observed that "intake of regular ground coffee and of caffeine was associated with lower incidence of chronic liver disease." Dr Ruhl and colleague concluded, "Coffee and tea drinking decreases the risk of clinically significant chronic liver disease."

Coffee and Tea Intake May Lower Chronic Liver Disease Risk. Ruhl C, Everhart J, et al. Gastroenterol 2005: 129(6): 1928-36

SEXUAL DYSFUNCTION AND HCV USA - Sexual dysfunction has been reported in patients with hepatitis C virus (HCV) infection, yet little is known about this association. The aim of this study was to determine the prevalence of sexual dysfunction among men with chronic HCV infection and to evaluate the impact of sexual dysfunction on health-related quality of life (HRQOL). Methods: We enrolled 112 HCV positive men without cirrhosis who were not taking interferon/ribavirin and 239 HCV negative controls. Men were excluded if they had diabetes, HIV, prostate or other cancer, prostate surgery, thyroid disease, alcohol or drug abuse, or were on methadone. A medical history was obtained, and all patients completed validated questionnaires to assess sexual function, depression, and Health Related Quality of Life (HRQOL). Results: Although HCV+ patients were younger than control subjects, they had significantly more sexual dysfunction as per the sexual function questionnaire. For overall sexual satisfaction, the proportion of subjects who were not sexually satisfied was higher in the HCV+ patients than in controls and this remained significant after adjusting for age, race, and other potential confounding variables. In addition, HCV+ patients were more likely to use sildenafil citrate (Viagra) within the last 30 days as compared with control subjects. Among HCV+ patients, the proportion of subjects who were not sexually satisfied did not differ among those with none, mildmoderate, moderate-severe, and severe depression. HCV+ patients who were not sexually satisfied scored significantly worse in 6 of 8 domains of HRQOL as compared with HCV+ patients who did not report being sexually dissatisfied. Conclusions: Sexually dysfunction is highly prevalent in men with chronic HCV infection, is independent of depression, and is associated with a marked reduction in HRQOL. Additional studies are needed to determine the pathophysiological mechanism underlying the association between chronic HCV infection and sexual dysfunction and evaluate the impact of HCV eradication on sexual function.

Sexual Dysfunction is Highly Prevalent Among Men with Chronic Hepatitis C Virus Infection and Negatively Impacts Health-Related Quality of Life. Wan D, Danoff A, et al. Abstract ID: 65377, Category: JO4: HCV: Epidemiology,

Abridged from www.hcvadvocate.org

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research update VIRAL LOAD HELPS PREDICT DISEASE OUTCOME (OVERVIEW) USA - Hepatitis C RNA (viral load) level is a predictor of end-stage liver disease death among persons with chronic hepatitis C, reports a recent issue of Hepatology. Dr Michie Hisada and colleagues from Maryland evaluated whether end-stage liver disease death was associated with pre-illness viral load level. The research team also assessed whether end-stage liver disease death was associated with specific HCV protein antibodies. They evaluated a group of 6,570 injecting drug users enrolled in nine US cities between 1987 to 1991. They compared 84 end-stage liver disease and 305 randomly selected cohort participants with detectable hepatitis C RNA. The team found that risk of end-stage liver disease death was unrelated to the intensity of HCV antibodies. They noted that the risk of end-stage liver disease increased with hepatitis C RNA level. The association between hepatitis C RNA level and endstage liver disease death remained significant after adjustment for alcohol consumption. The researchers found that men had an increased risk of end-stage liver disease death under a certain type of analysis. Dr Hisada's team concluded, "Hepatitis C RNA level is a predictor of end-stage liver disease death among persons with chronic hepatitis C infection."

Hep C RNA levels predict end-stage liver disease. Hisada M, et al. Hepatol 2005: 42(6): 1446-52

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VIRAL LOAD AS A PREDICTOR OF PROGRESSION OF CHRONIC HEPATITIS C? (DETAILED) NB: This article is heavily abridged USA - The long-term outcome following exposure to the hepatitis C virus (HCV) is a product of outcome of the two phases of the infection: first, whether or not acute hepatitis spontaneously clears; and second, if virus persists, whether or not the established chronic hepatitis remains stable or progresses. A characteristic of acute HCV infection is its low rate of viral loss, presumably a consequence of a blunted immune response to the virus. This has prompted efforts to seek features associated with or predictive of viral persistence. Of several identified features, age at initial infection plays a crucial role. Whereas 75% to 85% of older infected persons (considered to be >40 years of age) do not lose virus, spontaneous clearance occurs in almost 50% of younger infected persons. There is scant evidence that either viral load or genotype effect spontaneous resolution. Concern about the high frequency of chronic hepatitis and its implications has prompted attempts to determine its natural course using several strategies. The process has been difficult because both acute and chronic hepatitis C are usually asymptomatic conditions, and the course of chronic hepatitis C is measured in decades. Available data suggest, however, that the course is quite variable. Some people develop slowly advancing liver disease, culminating in end-stage liver disease (ESLD) or hepatocellular carcinoma; some die early with but not from ESLD because of other associated morbidities; and some, perhaps the majority, persist with HCV infection but remain alive and well with stable liver disease, dying ultimately from non-liver disease–related causes. Accurate information on lifetime outcome, therefore, requires many years of careful study, well in excess of two decades. Currently, the anticipated lifetime outcome derives from predictions based natural history studies of only moderate length. Accordingly, efforts have been directed at seeking host, environmental, or viral related features that may explain progression of established chronic hepatitis C. Current thinking is that host-related features play the predominant role. Thus, similar to the acute hepatitis C situation, age at infection seems to be a primary determinant of disease progression. Other important hostrelated factors include the co-existence of certain infections (e.g., hepatitis B, HIV, and schistosomiasis), and superimposed nonalcoholic steatohepatitis (NASH), or diabetes. By far the leading extraneous factor is concurrent chronic alcoholism.

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research update Contradictory research findings regarding the effect of viral load, however, are reported (in this issue of Hepatology) by Hisada et al. In this study, which involved 6,570 injection drug users infected with HCV, some of whom were coinfected with HIV and some with human lymphotropic virus, they examined and contrasted the impact of both pre-illness viral load levels and specific HCV protein antibodies between 84 individuals who had died from ESLD and 301 randomly selected living individuals infected with HCV. They found the relative hazard of death from ESLD to be unassociated with HCV antibody intensities, but that its rate increased with higher HCV RNA levels. They found that ESLD was unrelated to alcohol consumption, sex, or HIV coinfection. They thus conclude that among persons with chronic hepatitis C, viral load is a predictor of death from ESLD. There have been a number of previous attempts to examine the impact of viral load on liver disease severity by relating it to the degree of ALT activity and the extent of liver cell abnormality. Most have been single, crosssectional studies that have not, however, tracked the long-term significance of the findings, as was done in Hisada’s study. The results of these previous studies have been varied: the majority found no relationship whatsoever with liver disease severity; some identified increased liver inflammation without an impact on fibrosis; and a few identified increasing liver cell damage with increasing levels of virus. So, what accounts for the findings by the present authors of a strong association between HCV RNA levels and ESLD, given that the weight of evidence seems to contradict this relationship? Indeed, if their findings are valid it would suggest, as the authors note, that lowering viral load with antiviral treatment may decrease advancement to ESLD, even if virus cannot be eliminated. Possible explanations for these discrepancies are that either the conclusions of previous studies or those of the present study are incorrect, or that both are correct and the variation is accounted for by diverse study populations. Alternatively, disagreement among the differing studies might stem from utilization of serological assays of differing sensitivities or from faulty data interpretation. All subjects in the present study were injecting drug users; some were immunocompromised by coinfection with HIV and HTLV II and others possibly by factors peculiar to this population, such as additional infections, co-morbidities, or nutritional deficits. In contrast, most previous studies involved people with a lesser likelihood of immune compromise. Conceivably, the higher viral load levels might result from the induced immune deficiency, which itself accounts for the liver disease progression. Indeed, as is widely accepted and even referred to by the authors, HCV is not considered a cytopathic agent, further supporting the likelihood that it is the immune compromise rather than the viral load that is responsible for inducing progression of chronic liver disease.

Additional evidence for this view is that other HCVinfected groups who are immunosuppressed, such as those coinfected with HIV, those who have received kidney or liver transplants, or those with agammaglobulinemia, display a high HCV viral load and a high likelihood of progressing to ESLD. Thus, the immune dysregulation itself could account for both the raised viral load and the liver disease progression. The issue thus becomes the difference between cause and effect. Regarding relative sensitivities of the serological assays, most previous studies were performed in the early- to mid-1990s, since which time technology has markedly improved; clearly, the present study cannot be criticized on this account. Regarding the varied sophistication of data analysis, the present study also cannot be faulted on this score, although the statistical analyses were highly complex and indeed difficult to easily digest. Of some concern, however, was the reliance of these authors for diagnosis of ESLD on the National Death Index, well known to be far from accurate. Another issue to consider is the report by the authors that HIV was not associated with ESLD when adjusted for HCV viral level in multivariate analyses, and that death from AIDS was not associated with HCV RNA. This must be viewed in the context of the time of the study, which occurred prior to the introduction of highly active antiretroviral therapy (HAART). At that time, most deaths resulted from the HIV infection, an outcome that has changed with the advent of HAART; currently, most deaths are due to ESLD. Since progression to cirrhosis generally requires the passage of 20 to 30 years, and the present study began approximately 8 years ago, it is feasible that many study participants already had severe underlying chronic liver disease at study initiation. This raises the issue of lead-time bias. Nevertheless, the findings of these authors cannot be dismissed and are clearly of importance regarding the question of therapy. However, it seems premature to recommend therapy with the implied aim of “reducing viral load” in order to prevent or reduce ESLD until further studies are undertaken using a prospective approach with serial viral level measurements and probably repeat liver biopsies. The basis for progression of chronic hepatitis C is not only of theoretical importance but also has biologic relevance. Since there are those that cannot presently be cured, it is important to identify and ameliorate factors that cause progressive liver disease. Relevant studies are in progress.

Abridgement of editorial by Theo Heller & Leonard B. Seeff in Hepatology 2005;42, relating to ‘Hepatitis C virus load and survival among injection drug users in the United States’, (pages 1446-1452).

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research update DIABETES LINK TO LIVER DISEASE USA - Most people with diabetes know that they have an increased risk of heart disease and stroke, but few realise that their diabetes is also raising their risk of having both liver disease and liver cancer. "There is now growing evidence that some endocrine disorders, in particular diabetes mellitus, may actually cause liver disease," said Dr Adrian DiBisceglie of the division of gastroenterology and hepatology at the Saint Louis University School of Medicine. Two new studies reveal that people with type 2 diabetes have two times the risk of developing liver disease and possibly three times the risk of developing liver cancer as their healthy peers. These findings emphasise the importance for those with diabetes to keep a close eye on their liver health. In the first study, published in Gastroenterology, researchers followed over 170,000 patients with type 2 diabetes and over 650,000 patients without diabetes who were admitted to various Veterans Affairs hospitals across the country. Fifteen years after being discharged, the patients with diabetes were almost twice as likely to have chronic liver disease as the patients without diabetes. While it is unclear whether diabetes directly causes liver disease, or if changes in liver function cause diabetes, Dr Hashem El-Serag, study author from the Houston Veteran Affairs Medical Center, sees this study as an important warning. Because liver disease can often cause no discernible symptoms and go unnoticed, "regular testing of liver enzymes for patients with diabetes," is recommended, he said. In a related study, published in the journal Gut, 2,061 patients with liver cancer were compared to over 6,000 patients without liver cancer from a Medicare database. The researchers found that 43 percent of the patients with liver cancer also had diabetes, while only 19 percent of the cancer-free control group had diabetes. When other factors that contribute to liver cancer risk, like alcoholism, were taken into account, the researchers found that patients with diabetes had three times the risk of developing liver cancer as the general population. "Our results indicate that diabetes is associated with an increased risk of [liver cancer] among people 65 years and older," wrote El-Serag. Chronic liver diseases, caused by hepatitis B, hepatitis C, heavy alcohol consumption and fatty liver disease have previously been shown to be major risk factors for developing liver cancer, but this is the first time that diabetes alone was seen as a risk factor for liver cancer.

Abridged from http://abcnews.go.com via www.hcvadvocate.org

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ERYTHROPOIETIN ASSISTS WITH THERAPY INDUCED ANAEMIA USA - Erythropoietin (EPO) is now often used to treat ribavirin-induced anaemia in patients with chronic hepatitis C (HCV) virus infection, hoping to neutralise a reduced probability of SVR caused by anaemia-related dose reductions. As a growth factor, EPO may also stimulate platelet production. STUDY AIM: To determine whether people on HCV antiviral therapy and receiving EPO exhibit a change in platelet counts. METHODS: A careful retrospective analysis of platelet counts of HCV patients on antiviral therapy at a liver center. Platelet counts were evaluated just prior to start of EPO, and then at week 2 and monthly for six months into therapy. People received EPO (40,000 U/ wk) for severe anaemia associated with ribavirin therapy. People on antiviral therapy who did not receive adjuvant EPO due to only mild anaemia on antiviral therapy were matched for platelet count, presence of cirrhosis, age, race, sex and HCV genotype. RESULTS: 40 patients were studied: 20 received EPO and 20 served as controls. Five per cent had established cirrhosis. Age, gender, genotype and ethnicity were similar between groups. Predictably, patients on EPO exhibited an increase in haemoglobin, but also showed an increase in platelet count as early as two weeks into EPO therapy. In contrast, platelet count did not change appreciably in controls. The increase in platelet count associated with adjuvant EPO became more pronounced and significant at 1, 2 and 3 months into therapy. CONCLUSIONS: Use of erythropoietin is associated not only with increased haemoglobin but also with increased platelets counts in people on antiviral therapy with interferon and ribavirin for chronic HCV infection. It would appear that EPO may contribute to maintaining optimal doses of antiviral therapy by supporting both, haemoglobin and platelet levels. The effect of EPO on the latter may be particularly beneficial in cirrhotic patients who are often thrombocytopenic prior to the start of antiviral therapy. These observations warrant further characterisation by prospective studies.

Erythropoietin Increases Platelets Count During Antiviral Therapy With Interferon and Ribavirin for Chronic Hepatitis C Virus Infection. Borate U, Rothstein K, et al. Albert Einstein Medical Center, Philadelphia, PA. Abstract ID: 63531, Category: JO7: HCV: Treatment. American Association for the Study of Liver Disease meeting, 2005.

Abridged from www.hcvadvocate.org

research update ERYTHROPOIETIN COMBO IS NOT COST THERAPY IN EFFECTIVE PEOPLE WITH PSYCH ILLNESS USA - Aim: To determine the costeffectiveness of erythropoietin administration to people with genotype 1 and advanced fibrosis who develop treatment-related anaemia. Methods: We constructed a Markov cost-effectiveness analysis model with one-year cycle length. Patients cycled between seven states: bridging fibrosis, compensated cirrhosis, hepatocellular carcinoma, decompensated cirrhosis, liver transplantation, and death. Transition probabilities, quality of life measurements and costs were obtained from systematic literature review. We used wholesale drug costs and performed the analysis from a Medicare payer perspective (2003 US dollars). For erythropoietin administration to be cost effective, the incremental improvement in sustained virological response must be 5.7% or greater. Our base case assumes the erythropoietin improves sustained virological response by 3.8%. Conclusions: Our comprehensive Markov model suggests that administration of erythropoietin is not cost-effective for hepatitis C patients with advanced fibrosis who develop treatment-related anaemia. The small gains in response rate are eclipsed by the large increase in cost of therapy due to the addition of erythropoietin.

Administration of Erythropoietin for Hepatitis C Treatment-Related Anaemia Is Not Cost Effective. Campbell MS, Sun JC, et al. University of Pennsylvania, Philadelphia, PA, Abstract ID: 65541, Category: LO1: Public Policy, Epidemiology, and Decision Analysis. American Association for the Study of Liver Disease meeting, 2005.

Abridged from www.hcvadvocate.org

USA - People with chronic hepatitis C (CHC) have a high prevalence of psychiatric disorders. Interferon and Ribavirin combination therapy exacerbates psychiatric disorders and/or leads to premature discontinuation of treatment. Aims: Our aims were: 1) describe the treatment course of people with psychiatric disease, and 2) explore whether they can be safely treated with IFN based therapy. Methods: Between 1997 and 2005, 1,300 people with CHC and psychiatric illness were considered for IFN based therapy. Of these, 271 had CHC alone + psychiatric illness. 108 were deemed psychiatrically stable for treatment. We report on 80 people who completed a course of pegylated combination therapy. Results: Seventy-three per cent successfully reached end of treatment. 16% discontinued early due to exacerbation of psychiatric disorder, 7% due to drug related adverse events and 4% due to nonadherence. Conclusions: 1) People with preexisting psychiatric illness tolerated treatment with pegylated combination therapy well, and 2) The type of psychiatric illness did not affect a person’s compliance, ability to complete treatment duration or response to treatment.

Combination Therapy Using Pegylated Interferon and Ribavirin in Patients with Psychiatric Illnesses. Barakat F, Carlson M, et al. University of California, San Diego, San Diego, CA, Abstract ID: 64072, Category: JO7: HCV: Treatment, American Association for the Study of Liver Disease meeting, 2005.

HEPATITIS C IMPACT IN THE UNITED STATES USA - The December 2005 Hepatology reports that as people with hepatitis C continue to age and disease burden progresses, suboptimal decisions on hep C treatments will bring additional costs for the health care system. Dr Kevin Schulman and colleagues analysed inpatient data from the Healthcare Cost and Utilization Project. The investigators also assessed outpatient data from the National Ambulatory Medical Care Survey, and drug data from the Verispan Source Prescription Audit. They examined recent growth in the use of health care resources among people with hepatitis C by age group. The team found average annual increases of 25% to 30% for hospitalisations, charges, hospital days, and physician visits. From 1994 to 2001, the team noted the hepatitis C burden increase among patients aged 40 to 60 years, reflecting the natural history of disease progression. Dr Schulman's team concludes, "Our findings highlight the urgency concerning hepatitis C outcomes." "As patients continue to age and disease burden progresses, suboptimal decisions regarding hepatitis C treatments will bring increasing opportunity costs for the health care system and society."

Hepatology 2005: 42(6): 1406-13

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research update MOTHERS PASS HEPATITIS C MORE OFTEN TO INFANT GIRLS Italy - The results of a large European study suggest that mother-to-child transmission of hepatitis C virus (HCV) occurs significantly more often among girls than among boys. The study findings, based on 1,787 HCV positive pregnant women and their infants seen at 33 centres, also "strongly suggest" that women should not be encouraged to undergo elective cesarean section or discouraged from breast feeding solely in the hopes of preventing motherto-child HCV transmission, the researchers add. The overall mother-to-child HCV transmission rate for the study group was low (6.2 percent), Dr. Pier-Angelo Tovo from the University of Turin in Italy and colleagues report in The Journal of Infectious Diseases. According to the team, elective cesarean section did not protect against HCV transmission. Maternal history of injection drug use, prematurity, and breast-feeding were also not significantly associated with mother-to-child HCV transmission. HCV transmission occurred more often in women with detectable levels of virus in their blood, but it also occurred in a few women without detectable virus. As mentioned, Tovo and colleagues found that girls were twice as likely to be infected with HCV as were boys. To their knowledge, this is the first report of a significant association between sex and HCV vertical transmission. The sex association is "an intriguing finding" that probably reflects hormonal or genetic differences in susceptibility or response to infection between males and females, they suggest.

Journal of Infectious Disease, December 1, 2005.

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HEROIN MOTHERS: AN INTIMATE VIEW Australia - Women who inject drugs are likely to take their first hit to become closer to their partner and to change the way they see themselves, a University of Melbourne researcher has found. With hepatitis C rates for women now starting to rise at a higher rate than men, Fiona Martin says it is especially important to consider how drug users themselves see drug use, as well as what the statistics tell us. Ms Martin, who has been working with Dr Kevin McDonald in the Sociology Program and Associate Professor John Fitzgerald in the University’s School of Population Health during her PhD study, followed 21 Melbourne women who were either pregnant or young mothers and had a history of heavy drug use. The study followed the women through the final stage of their pregnancy and into early motherhood, qualitatively assessing their battle with drug dependency and exploring the reasons they started using, as well as their attempt to overcome dependency. Ms Martin said the study was important because previous research has shown that around 50 per cent of drug injecting women have a partner, and over 70 per cent of these women's partners are also users. Women are also much more likely than men to receive their first hit from a partner or lover and to continue to depend on them to administer injections. "Although many stereotypical views of junkies are that of a depressed loner, research actually showed the opposite, that intimate relationships are central to the first experience of drug injecting, especially for women," she said. "For some of the women I looked at, becoming closer to someone was more important than the risk of hepatitis C, HIV or other damage which might ensue." "If we can start to understand what leads people to desire that closeness, or why people want to take risks, then we can start to address those issues and reduce the harms associated with injecting." During her study Ms Martin found that the women she came in contact with, especially first-time mothers, wanted to stop using drugs through pregnancy, and that the support available for women at this time can assist them with this process. "The main theme I then came across was a mothers' desire to have a relationship with her child and to remember the child's younger years - something not possible if she remained a heavy user."

Abridged from http://uninews.unimelb.edu.au via www.hcvadvocate.org

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research update NO INCREASED RISK FOR WHY SOME OVERCOME TRANSMISSION VIA HCV NATURALLY BREASTFEEDING UK / USA - More than 170 million people worldwide USA / Europe - Doctors will be able to reassure people that breastfeeding does not raise the risk of mother-tochild transmission of hepatitis C virus (HCV), according to two studies published in the Journal of Infectious Diseases. The American and European studies, taken together, expand upon preliminary data from smaller studies of mother-to-child transmission of HCV. About 3% of the world's population has chronic HCV infection. The larger of the two studies, conducted by the European Pediatric Hepatitis C Virus Network, involved 1,479 mother-and-child pairs enrolled at 33 centres in Italy, Spain, Germany, Ireland, the United Kingdom, Norway and Sweden. The other study, by Dr Eric Mast of the US Centres for Disease Control and Prevention and colleagues, followed 244 infants born to infected mothers in Houston and Honolulu. The overall rate of transmission of the virus from infected mother to child was 6.2% in the European study and 3.6% in the US study. Children were considered to be infected if they had two or more positive HCV-RNA PCR tests and/or were anti-HCV antibody positive beyond 18 months. "Our results strongly suggest that women should not be offered an elective cesarean section or discouraged from breastfeeding on the basis of hepatitis C infection alone," said Dr Pier-Angelo Tovo, the lead author of the European study.

Abridged from www.medicalpost.com via www.hcvadvocate.org

have been infected with the Hepatitis C virus that can cause liver failure, cancer, and death. About 20 percent of the people who contract the disease fight it off without treatment. Researchers from the United Kingdom and the United States recently looked at the genetic makeup of people who had hepatitis C to try to find out what was different about the 20 percent who got better on their own. What the researchers wanted to know: Why does hepatitis C affect some people permanently and not others? What they did: The researchers looked at the gene structure of 685 people who had hepatitis C and 352 people who had been diagnosed with the disease but whose bodies had got rid of the infection. They studied the particular pattern of how genes on different chromosomes interacted with each other and activated specific cells in different people. What they found: The researchers found that people who had beaten hepatitis C had a different genetic makeup from others whose bodies could not get rid of it. Everyone has certain types of immune cells called natural killer cells, which act as the emergency response team for the immune system, rushing to the site of a new infection. Some people's genes line up in such a way that they are less effective at inhibiting these natural killer cells, meaning that the cells are more often activated. That variation seems to work in their favour in the case of hepatitis C because the natural killer cells respond quicker and more aggressively to the infection. What it means to you: knowing why the infection is killed in some people but not in others could give doctors a direction for further research into therapies that might help the 80 percent whose genes are not configured to deal with the infection. Caveats: hepatitis C is usually contracted through blood, such as a blood transfusion or sharing needles. For people who had contracted the disease in a way where the virus arrived en masse, as in a transfusion, even the winning combination of genes was no match for the hepatitis C virus. Only those who had been exposed to a small amount of blood and had the right genetic lineup were able to rid their bodies of the infection.

Khakoo, S.I. et al. HLA and NK Cell Inhibitory Receptor Genes in Resolving Hepatitis C Virus Infection. Science. Aug. 6, 2004. Vol. 305, pp. 872 – 874.

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interferon-based therapy Peg interferon alpha and ribavirin

PegInterferon Alpha-2a or 2b

Subsidised ‘peg combo’ treatment for people with chronic hepatitis C is available to those who satisfy all of the following criteria:

Australian Government-funded PegInterferon Alpha-2a or 2b involves a course of weekly pegylated interferon injections for up to 52 weeks. People are asked to visit their GP or specialist for follow-up visits during and after treatment. Aside from modest Pharmaceutical Benefits Scheme charges, there should be no additional costs levied by treatment centres.

Blood tests: people must have documented chronic hepatitis C infection (repeatedly antibody positive or PCR positive).

Contraception: women of childbearing age undergoing treatment must not already be pregnant nor breastfeeding, and both a woman and her male partner must use effective forms of contraception (one for each person). 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 already be pregnant.

Age: people must be 18 years or older.

Treatment history: people must not have had prior interferon or peg interferon treatment.

Duration & 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.

When interferon molecules are pegylated, the drug lasts longer in the body. It is injected once a week and ensures a more consistent therapeutic dose rather than the peaks and troughs of thrice-weekly injections. PegInterferon Alpha-2a or 2b monotherapy leads to a sustained response in around 25% of those who try it, basically doubling the sustained response rate of basic interferon monotherapy. Government-funded treatment is offered to people 18 years or older who have chronic hepatitis C and compensated liver disease, and who have received no prior interferon therapy, and who have a contraindication to ribavirin (can’t tolerate it) and who satisfy all of the following criteria: 1

Blood tests: people must have abnormal ALT levels in conjunction with documented chronic hepatitis C infection, i.e. repeatedly antibody positive and/or HCV RNA (PCR) positive.

Other liver damage: people mustn’t have other forms of chronic liver disease.

Contraception: women of childbearing age must not be pregnant, not breast-feeding, and must be using an effective form of contraception.

Duration: with Alpha 2a, the treatment course is limited to 48 weeks. People may only continue treatment after the first 12 weeks if PCR viral load testing shows that the plasma HCV RNA has become undetectable or the viral load has decreased by at least a 2 log drop.

Duration: with Alpha 2b, the treatment course is limited to 48 weeks at 0.5 to 1 microgram per kilogram weekly. People may only continue treatment after the first 12 weeks if PCR viral load testing shows that the plasma HCV RNA has become undetectable or the viral load has decreased by at least a 2 log drop.

CAUTION Treatment with interferon alpha has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised PegInterferon Alpha-2b if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or in the female partners of men undergoing treatment must be avoided during therapy and for 6 months after cessation of treatment.

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complementary therapies Alternative access

Complementary therapies

People wanting to access interferonbased therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price or seek access through industrysponsored special access programs.

Good results have been reported by some people using complementary therapies while others have found no observable benefits. As with any treatment, it’s important to remember that wrongly-prescribed medicines can be harmful.

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 hepatitis C:

•

a nurse educator/counsellor for patients

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24 hour access to medical advice for patients

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an established liver clinic

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side-effects (see Ed 15, p 6). A similar trial but on a larger scale was carried out in the NSW Northern Rivers region (see Ed 24, p 8). Currently, a trial of particular herbs and vitamins is being carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see Ed 45, p 9). Some people choose complementary therapies as a first or a last resort. Others may not use them at all. 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: •

Is the treatment dangerous if you get the prescription wrong?

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How has their complementary therapy helped people with hep C?

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What are the side-effects?

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Is the practitioner a member of a recognised natural therapy organisation?

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How much experience do they have working with people with hepatitis C?

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How have they measured the health outcomes of their therapy?

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How do they aim to help you?

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 gaols for women) and various clinics for monitoring ongoing treatment.

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask your natural therapist about money before you visit them. Many will come to arrangements about payment; perhaps a discounted fee? It is also important to continue seeing your regular doctor and/or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you may want to 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 hepatitis C. Additionally, they should be members of a relevant professional association. Phone the NSW Hep C Helpline (see p52) for more information and the contact details of relevant professional associations.

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support / info services NSW Hep C Helpline

Sexual health clinics

For free, confidential and non-judgmental information and emotional support you can phone the NSW Hep C Helpline. The service gives you the opportunity to talk with trained phone workers and discuss those issues important to you. It also provides referral to local health care and support services:

Although hepatitis C is not classified as a sexually transmissible disease, staff at these clinics can offer a range of services including pre- and post-test discussion and HCV blood tests. They are listed in your local phone book under ‘sexual health clinics’.

•

9332 1599 (Sydney callers)

•

1800 803 990 (NSW regional callers)

If you are concerned about confidentiality, these clinics do not need your surname or Medicare card and keep all medical records private.

Prisons Hep C Helpline

Other support & counselling

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 gaol phone, or by calling the numbers above.

Traids is a statewide counselling, support and advocacy service for people with medically acquired hepatitis C and HIV. They offer short and long-term counselling, information, support and advocacy to affected people and their families and/or carers. Traids services are free and confidential, and on either a face-to-face or telephone basis. They also run support groups and have a regular newsletter. Current hepatitis C information is available. For more information, phone 02 9843 3143 (Traids have a call-back policy for NSW regional callers).

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.

General Practitioners It is important that people find a well-informed GP who can support all long-term health care needs. Ideally, a doctor should be able to review and monitor a person’s 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. GPs should be able to advise when it is necessary to seek specialist advice or further investigations or about research trial options. The NSW Hep C Helpline may be able to refer people to doctors and other health care workers in their area who have been involved in hepatitis C training.

Alcohol & other drug services People who inject drugs and want to access peer-based information and support should phone NUAA (the NSW Users and AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW health services have a number of Drug and Alcohol clinics set up around the state. These centres offer confidential advice, assessment, treatment and referral for people who have a drug/alcohol problem or who have concerns about the use of these substances. The services are free and the staff are experienced in all aspects of drug and alcohol use and associated conditions. If you are worried about your own or someone else’s drug and alcohol problem, phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Syd) or 1800 422 599 (NSW), or contact your local hospital or community health centre who will also be able to advise you on your nearest clinic.

Family Drug Support An organisation that provides assistance to families to deal with drug issues in a way that strengthens relationships and achieves positive outcomes. Phone FDS on 1300 368 186.

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Family & relationship counselling If hepatitis C is impacting on your family relationships, it may be wise to seek family or relationship counselling. To find out more, contact Relationships Australia on 9418 8800 or 1800 801 578.

Advice on food & nutrition Accredited Practicing Dietitians (APD) are qualified dietitians engaged in a formalised system of ongoing professional updating. 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, call the Dietitians Association of Australia: 6282 9798 or 1300 658 196 or www.daa.asn.au

Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) works with culturally and linguistically diverse individuals and communities to achieve better health and wellbeing in relation to HIV/AIDS and hepatitis C, and to encourage and support health services working in these areas to respond appropriately and equitably. MHAHS targets 20 different language groups, but is also available to other individuals and communities from culturally diverse backgrounds seeking assistance. For more details, phone 9515 5053 or 1800 108 098 or just visit http:// www.multiculturalhivhepc.net/ to access hepatitis C information in languages other than English.

NSW Health hepatitis C regional coordinators Phone the NSW Hep C Helpline (above) for information about possible local services in your area and/or contact details for your hepatitis C regional coordinator.

support / info services Hep C Australasia This Australasia-wide online internet community has over two hundred members. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit http:// hepatitisc.communityzero.com/

St Vincent’s Support Group Darlinghurst This treatment-related support group kicked off the new year on 20 Jan and meets on the first Tuesday of each month. St Vincent’s Hospital, Darlinghurst For information, please contact Zoe Potgieter 8382 2887.

Central Coast HOTS group HOTS: HCV and Offering Togetherness and Support. We are a Central Coast hep C support group who meet twice a month on the 1st Wednesday evening of the month from 7.30 to 9.00 pm, and the 3rd Tuesday morning of the month from 10.30 am to 12 midday.

St George Support Group Group meets intermittently at the Waratah Clinic. For information, please contact Philip on 9350 2961.

These different times allow people who work or study to attend as well. We meet at the PSN House at North Gosford. We also have guest speakers, general discussion and outings. You will always get a cuppa.

Westmead Support Group

For information, please contact Leslie on 4323 2905.

From 7pm to 8.30pm, every 1st Thursday of each month (except Dec & Jan) at Room 2, Level 2, Parramatta Health Service, 158 Marsden St, Parramatta. There is free parking, with entry via George Street. Otherwise, it is a 10 min walk from Parramatta station.

Hunter Hepatitis C Support Services

A support group for people living with hepatitis C, including those on treatment. People from any area are welcome.

A service that is open to all people of the Hunter living with HCV and is linked to a team of health care professionals specialising in hepatitis C treatment & care. Based at John Hunter Hospital, Lookout Rd, New Lambton.

For information, please contact Sen Kee on 9845 7706, Maria on 9843 3143, or Frances or Susan on 9840 4110.

For information, please contact Gabrielle Murphy on 4921 4762 or Tracey Jones on 4921 4789.

Westmead Hepatitis C Information Nights

Nepean Hepatitis 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 Jo or Vince on 4734 3466.

Northern Rivers Support Group Support groups often come and go. For information, please contact Wendi Evans on 6620 7539 or Marilyn Lebeter on 07 5506 6858.

Our Information Nights are aimed for people with hep C, families, friends and interested others. Our speakers talk about various aspects of hepatitis C such as: research about the virus, transmission, treatment and symptom relief. People who have hepatitis C or who have successfully undergone treatment often speak of their experiences and we also allow time for questions and answers. Supper is generally provided as we know this can be an awkward time for some people. Parking is available at the hospital but you will need five dollars in coins. Alternatively, it is about a ten-minute walk from Westmead station. Go to the main entrance of the hospital and ask for directions at Reception, or look for our signs. There is no charge for the Information Night and people from any area are most welcome. For information, please contact Sen Kee on 9845 7706, Maria on 9843 3143, or Frances or Susan on 9840 4110.

Port Macquarie Hepatitis C Support Group Peer support available for people living with or affected by hep C. For information, please contact Lynelle Wood on 6588 2750 or Alison Mears on 0418 207 939.

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noticeboard Our loan library Library loans are available for up to 4 weeks. 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 borrowers are required to pay return postage. Please enquire about postage rates when you call the Helpline.

Videos The Big Combo (HCCNSW, 2002): Approx 20 mins; two people consider pharmaceutical treatment for hepatitis 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 hepatitis 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): Approx 30 mins; real-life stories of people’s experiences with hepatitis C and interviews with health specialists. Suitable for individuals and health workers. English. (Council members only)

The most precious gift Until recently, people living with hepatitis C have been advised not to donate body organs - because HCV would be carried across to the recipient. This advice has now changed and it is suggested that people with hepatitis C do consider the act of organ donation. Transplanting a hepatitis C infected liver into someone who already has hepatitis C makes good sense - if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and non-HCV livers are available for that person at the time. People seeking more information about donating their liver should contact Lifelink, the NSW/ACT network that coordinates organ donation. Phone 02 9229 4003.

HCCNSW

Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hepatitis C clinical management, treatment and prognosis. Suitable for health workers. (Council financial members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hepatitis C management, treatment and lifestyle issues, as well as other liver disorders. Suitable for individuals and health workers. (Council financial members only)

Cassette Tapes Hepatitis C: A Brief Introduction (HCCNSW, 2000): The Council’s comprehensive brochure on audiotape for people with reading difficulties. NB: treatment information has changed slightly since 2000. English.

HCCNSW

Volunteers sought for Hep C Review mailout We want to recruit volunteers from the readership to help with the ED53 mailout in early June and hope you might consider coming along. We offer free training on the job, bottomless coffee, biscuits and air conditioning. Our mailout mascot Rusty will be here (and he is great with kids). For more information, phone Paul on 9332 1853.

Conference update 14th National Symposium on Hepatitis B and C Saturday, 18 November 2006 St Vincent’s Hospital Melbourne Vic Email eleanor.belot@svhm.org.au

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Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information: www.hepatitisc.org.au

membership form / renewal / tax invoice An invitation to join / rejoin the Council Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About the Council We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hepatitis C throughout NSW. The Council is overseen by a voluntary Management Committee, 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.

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

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

Suburb/town State

Postcode

Home phone

Email:

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

Privacy policy The Hepatitis C Council of NSW respects and upholds your rights 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.

For 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.

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

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

2 5 10 20 50 100

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

Suburb/town

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

State

Postcode

Work phone

Work fax

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.

Mobile

Email:

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

The Hep C Review

Edition 52

March 2006

membership form / renewal / tax invoice 5. Separate donations are gratefully accepted by the Council.

2. Are you a new or existing member?

Donations of $2 and over are tax deductible.

This is the first time I've applied to become a financial member

If you would like to make a separate donation, please record the amount here:

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

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

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

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

I'm not sure - please check your database

Card number:

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

Card type

Waged: for people in paid employment

$25

Cardholder signature:

Concession: for people on government benefits

$10

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

Individual health or allied professionals

$40

7. Payment, GST and postage instructions

Community-based agency (Management Committee run)

$50

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

Public/private sector agency

$70

MasterCard

Expiry date:

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month:

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year:

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

Hepatitis C Council of NSW - Membership Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300

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

Our ABN is 96 964 460 285

8. Would you like us to post you a receipt?

4. Contact with the Council office. We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office.

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.

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

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

This section office use only

56 initials The Hep C Review staff

date received

Edition 52

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March 2006

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Hep Review 52

Articles inside

Support / info services

Complementary therapies

Noticeboard

Interferon-based therapy

Fifth Australasian viral hepatitis conference

Membership news

Article writing competition - Treatment in an isolated area

Article writing competition - My dream for a healing centre

Gen X and baby boomers face obesity time bomb

Article writing competition - Hepatitis C, interferon and the medical profession

Setting a standard approach to drinking

Hepatitis C treatment: how some people have coped

The normalisation of recreational drug use: part 2

Australian drug use trends

Calls for Australian prison needle exchange

Furore at prison tattoo proposal

Heplink member survey 2005: informing the planning process

Trials explained

Hello Hep C Helpline

The Hep C Review Edition 52 March 2006

General practitioners play increased role in treating hepatitis C

Australian trial of HCV polymerase inhibitor treatment

US prison blood scandal revisited in new film

Interview with a tattooist