Hep Review Summer
Testing your genes – the new IL28B test Science creates liver cells from skin One for the road – hep C and alcohol The fear factor – hep C discrimination Babool bark holds hope for liver cancer The Hep Review
e put out edition after edition – close to 18 years of magazine production. What is it that keeps this work interesting? I guess it’s the big ticket news items that come along that keep me really excited. Last edition, we carried news of the CHI Study; a study that will help build a better understanding of who has hep C and what are the key issues. Completing the survey took me about 20 minutes and I now feel like my voice has been better heard. Want to give it a go? Check out our promo on page 29. In this edition, we report on the IL28 gene test. It’s a new tool for when considering treatment. It has nothing to do with hep C genotypes (strains of the virus); this new blood test looks at our individual human genetic make up and predicts from person to person, whether or not treatment will be able to successfully clear the virus. In this edition you’ll also see news on our new project: Hep Backpackers. If you have a couple of hours to volunteer once a fortnight and want to help distribute information resources in your local area, please consider getting involved (see page 42). Many of you will probably be keen to read our commissioned article on alcohol and hep C. When being written, it raised a lot of interest among our medical advisors and we hope that you’ll find it interesting and useful. Our other commissioned article focuses on hep C discrimination, an ongoing and important issue confronting many readers. We hope the article helps keep this issue front and foremost in the struggle to address the hep C epidemic. Paul Harvey, Editor Nb: If you’re interested in how my 2010 treatment trial went, check out page 25.
a keyhole to our work Our work with young people There’s something to be said for the old adage “prevention is better than cure”. Recent studies have shown that the first year in which someone begins injecting drugs is a particularly high risk time for contracting hep C. It’s with this in mind that Hepatitis NSW has developed an increasing focus on young people and their awareness of hep C. A number of projects have come out of this, all of them with a simple aim: to decrease the number of young people contracting hep C through unsafe injecting, unsterile tattooing and piercing and other behaviours by which blood-toblood contact might occur. There have been two flagships of this focus over that last couple of years. One is the Health Promotion Award-winning Street Shot community arts project – an initiative of Hepatitis NSW that sees young people creating artworks after taking part in education workshops run by youth workers. The other success story in health promotion for young people has been Hepatitis NSW’s Transmission Magazine – a quarterly A5 magazine that features storylines around young people in various settings. Where then are these flagships headed? The third round of Street Shot took place in October this year. It was run in the North Coast Area Health Service as part of Hepatitis NSW series of education workshops in that area. Young people have the chance to win part of a $1,500 prize pool after they go out and create photographic essays dealing with issues directly affecting them and related to an increased risk of contracting or transmitting hep C. Transmission Magazine has been drafted into a new educational initiative targeting young people in Juvenile Justice and correctional settings.
Weblink of the month
The American Association for the Study of Liver Disease (AASLD) conference is an important annual event. Our friends at HCV Advocate provide good web coverage of the conference here ... http://tinyurl.com/23txndv
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
Cover pic by Paul Harvey.
acknowledgements The premise of the project is that young people are ideally placed to create storylines that are both educational and compelling. Hepatitis NSW is set to work in partnership with a service on the pilot of this innovative project that is all about young people helping to create a resource and educate themselves and others about hep C. Looking even further ahead towards Hepatitis Awareness Week 2011, the (tH)Ink About It project is another initiative of Hepatitis NSW aimed at increasing young people’s awareness of the risks associated with unsterile tattooing and piercing. Anecdotally, home-based tattooing and piercing is on the rise amongst young people. This is a concern because any unsterile skin-penetration presents a possible route for blood-borne infections to be passed on. Where’s the evidence for this in terms of hep C transmission? Good question. The evidence in Australia is that around 82% of people who have had hep C have contracted it through injecting drug-use at some time in their lives. Continued on page 23.
Seeking your story
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Lia Purnomo Gideon Warhaft Scott West Hep Review medical and research advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Yvonne Cossart, Prof Greg Dore Prof Geoff Farrell, Prof Geoff McCaughan Mr Tadgh McMahon, Dr Cathy Pell Ms Ses Salmond, A/Prof Carla Treloar Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Andi Andronicos Prue Astill Sarah Fleet Kris L Gerard Newham Adrian Rigg Cindy Tucker Dog on the moon comic: Andrew Marlton Contact The Hep Review: ph 02 9332 1853 fax 02 9332 1730 email email@example.com text/mobile 0404 440 103 post The Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney
Personal stories provide balance to our other articles. Please consider telling us your story. Published articles attract a $50 payment. Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.
Seeking your ideas We want The Hep Review to remain relevant to you. If you have any ideas we can use as topics for our commissioned articles (e.g. see page 18), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’. Just phone and ask for Paul (02 9332 1853), or email firstname.lastname@example.org or text me on 0404 440 103.
Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are funded by NSW Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to The Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided The Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.
The Hep Review
contents Letters All you need 2 do is ask
Paul’s story: patience and persistence 5
John’s story: still waiting to get back to a normal lifestyle 44
Hep teachers get to teach
Hep B teen dies after black magic
Safe injecting centre is here to stay
Hepatitis case leads to $500m payout
Tattooing increases hep C risk
Call for prison tattoo parlours
Resource of the month – What you need to know 7
Scientists create liver cells from skin
St Vincent’s viral hepatitis trials
Hep B found among Mission of Mercy patients
Sharing grows after NSP closed
HALC legal assistance
Virus in Asian bats could tell us more about hep C 9
Stigma issues for heroin users
Backpacking for hepatitis
Egypt officials reject high hep C estimates
Hep C bookmarks
Blood donation to blame for China’s high hep C
Hepatitis NSW website
Nicaragua to use Cuban hep B vaccine
Hep C genetic tests
HepConnect peer support program
Aussie genetic test gives hep C treatment odds
Sydney Central support group
A quarter of us misuse alcohol
The most precious gift - organ donation
NSW Coalition would remove thousands from gaols
WDP - Workforce Development Program
ACT opens up to prison needle exchange
Tassie high school students at risk of hep C
QLD politicians ‘playing with lives’
Hinch reveals he has liver cancer
Research updates Vitamin E helps those with fatty liver disease 50 Quality of life in patients with various liver diseases 50 Experiences of drug use and ageing
Factors associated with specialist assessment and treatment for hep C
IL28B testing and treatment overview
Babool bark holds hope for liver cancer cure
One for the road? Alcohol and hep C
Liver cancer on the rise in obese people
Men’s liver health campaign
Obituary: Bruce Thompson
A keyhole – Our work with young people
Show me the money: GWAHS’s hep C funding question 24
Q&A – Treatment access for drug users 16 Harm reduction poster – Vein care
The little book of hep C facts
Hello Hepatitis Helpline – Prison hep C treatment
A historical perspective (from December 1995)
Resources faxback order form
St George liver clinic: a social expansion of services 38
All you need 2 do is ask – Inmate health and how it is managed
Support and information services
Obituary: Richie Hayward
Do you want to help us?
What’s driving the fear factor? Hep C discrimination in the workplace
Ageing drug users face health problems
How did I get hep C?
Rural reflections Knowledge of and attitudes towards hep C in the Egyptian-Australian community in NSW
My story Wayne’s story: party time ‘n’ moving on
Complaints 58 22
Membership form / renewal / tax invoice
All you need 2 do is ask Image courtesy of Google Images
Hi Robert. Read your article in ED 70 (Sept 2010). I’m now inside and doing eight years. I’ve passed The Hep Review mag onto heaps of other inmates. There is always plenty of good reading and I liked the one about the methadone vending machines in UK prisons. I wonder if it’ll ever be here. Ha! Unlikely. I’ve had hep C for plenty of years, and I was told I had geno-3 which meant I would need 12 months on treatment. No thanks. I was also told I maybe could wait for a new drug that would soon be here which was better. Have you heard? (see below).
Hep teachers get to teach China – People in Beijing affected by viral hepatitis will be able to work as kindergarten teachers, after authorities cancelled restrictions against them. The Beijing Municipal Health Bureau and Beijing Municipal Commission of Education jointly issued a notice expunging the rule that hepatitis carriers of all types were not suitable to be engaged in preschool education.
Here, inside, there’s plenty of inmates with hep, and plenty still sharing and chasing drugs. All good for me, as I’m happy to be on the ‘done and a spectator. However, the amount of inmates who daily use with put-together fits which are shared between 20-30 inmates – no shit! The ones who know better smoke it for just the same result. Tellin’ you, it will never stop unless there is a fitpack on offer. Many will catch whatever. It’s a joke until people like you and your mag produce all news all inmates should know.
This move comes after a previous notice was jointly released by three ministries to preserve hep B virus carriers’ schooling and working rights. It stated that hep B tests should be cancelled and educational organisations and employers be prohibited from carrying out the tests, or even inquiring about people’s statuses.
The Hep Review in gaols is here if you get into the clinic and manage to try and move around and have a snoop...like me you will find the stash of mags. But they should be in the wings, on show for people to read, not hidden away on protection like lots of inmates who get stamped and end up being hated and called a dog. I enjoy your mag and I tell others and pass mine on: you need to know the truth.
The Beijing No.1 Kindergarten said that in the past, applicants diagnosed as hepatitis carriers would not be employed. “Those not meeting the examination standards would be asked to receive treatment until they recovered,” director Feng Huiyan told the Legal Mirror. A 31-year-old woman surnamed Zhou, whose four-year-old daughter is in grade two in a Beijing State-owned kindergarten, said she welcomed this new policy. “Maybe some parents will show their concerns toward children’s safety. It’s understandable,” she said. “The most important thing is that authorities should further popularise hepatitis knowledge.”
It’s a pretty long letter I’ve written you, and I’ve hardly mentioned all the bullshit inside the gaols that not many know about. Looking forward to each issue, and I’m trying to do my best without treading on any feet. Though it’s a joke, I enjoy my life. •
*Hi, Anonymous. We’ve passed on your full letter to Robert who will soon reply directly to you. By the way, if you have genotype 3, you probably need just six months on treatment. The new drugs that are in the pipeline are likely to benefit only people with hep C genotype 1.
• Abridged from http://tinyurl.com/24anq9r (20 August 2010).
The Hep Review
news Hep B teen dies after black magic India – There are some in Mumbai who believe in black magic. One mother of a 14-year-old boy handed over her son, who was suffering from jaundice, to a local tantrik. The tantrik said that some spirits had entered the boy’s body and he could be cured through black magic. The treatment, however, ended with the teenager’s death. The baba, under the pretext of ridding his body of the spirits, allegedly beat him with bamboos and sticks and made him sleep on a cold floor. In the morning, he was rushed to Sion hospital in a critical condition. Anand Murgeshwar died due to acute liver failure caused by hep B the following evening. • Abridged from http://tinyurl.com/2bhqxlo (9 July 2010).
Hepatitis case leads to $500m payout USA – Teva Pharmaceutical Industries said that it planned to appeal a multimillion-dollar verdict in a civil case stemming from a hep C outbreak two years ago. A Clark County District Court jury in Las Vegas ordered Teva on Friday to pay A$354 million in punitive damages to Henry Chanin and his wife, Lorraine. Another drug company, Baxter Healthcare, was ordered to pay the couple A$143 million. Health officials had blamed reuse of vials of the anaesthetic propofol for infecting patients with the incurable liver disease. Chanin’s lawyer, Robert Eglet said he represents 40 more patients with lawsuits who contracted hepatitis C and another 4,500 who were tested after the notification but did not contract the disease. The Chanins’ case was the first to reach trial. Henry Chanin, the 62-year-old headmaster of a private school run by the wife of Las Vegas’s mayor, contracted hep C in 2006 during a routine procedure at Desert Shadow Endoscopy Center, the jury was told. • Abridged from http://tinyurl.com/29lvt2z (10 May 2010).
We publish lots more hep C related news on our website. Do you want daily updates on our website news items? Just follow us on Twitter You’ll get the first 140 characters (a sentence or two) and a link to each news item as they are put up daily on our website. You’ll also get the link to the original source of the news item. It’s as easy as “one two three!” 1) Open a Twitter account. 2) In Twitter, click on “find people” and search for “hepCnsw”. 3) Click on the “follow” button.
news promotions Tattooing increases Call for prison tattoo hep C risk parlours USA – Getting a tattoo can increase a person’s risk for contracting hep C by nearly six times, according to a study published in the International Journal of Infectious Diseases. Various studies have demonstrated that the risk for acquiring hep C from tattooing varies depending on the population being studied and its baseline risk of hep C infection. Thus, it has been difficult to assess where the risks are greatest. To help answer this question, Dr Siavash Jafari, from the British Columbia Centre for Disease Control in Vancouver, and colleagues conducted a wide-scale analysis of published studies on the risk for hep C infection from tattooing. A total of 83 studies, including more than 134,000 participants around the globe, were included in the authors’ analysis. Populations studied varied from injecting drug users and prisoners to blood donors and community samples. Jafari found that the risk for acquiring hep C because of tattooing was actually greatest among non-drug-users, where the risk for infection was nearly six times higher among those with tattoos compared with those without tattoos. • Abridged from http://tinyurl.com/3ykxugv (11 Aug 2010).
UK – Scottish prisoners would have access to their own tattoo parlour under proposals being considered by officials. A report commissioned by the prison service has found widespread problems with infections such as hep C partly because inmates are tattooing each other without the appropriate equipment. According to the report, hep C affects 16-20% of Scottish inmates and 45-54% of prisoners who have been, or currently are, intravenous drug users. In 2008, some 54% of Scotland’s 8,000 prisoners said they had a tattoo and 18% of them said they had it done while in prison. In long-stay prisons such as Shotts the proportion who received their tattoo while in gaol was 28%. Most staff said stopping illicit tattooing would be very difficult. Five out of 10 of the prison officers interviewed for the study recognised the “benefits of having a professional tattoo service available” run by prisoners or someone externally, according to the research. However, there was concern about allowing needles into prison. Abridged from http://tinyurl.com/36sgafn (12 August 2010).
Featured resource of the month Hepatitis C: what you need to know is our key information resource distributed across NSW. This 84 page booklet covers a wide range of topics and has been in print since 1996.
What you need to know
We’ve recently had it reprinted and added information about the IL28B Gene Test, making the booklet as up-to-date as possible.
a guide to hepatitis C
If you have an interest in hep C, or know others who do, you’ll probably want to get hold of a copy. For single copies of the booklet, please phone the Hepatitis Helpline: 1800 803 990
What you need to know
For bulk supplies, please use our faxback resources order form on page 53, or http://tinyurl.com/2gx6hrc
The Hep Review
news Scientists create liver cells from skin UK – British scientists have created liver cells by re-programming stem cells taken from human skin, paving the way for potential new treatments for liver diseases. Cambridge University researchers who reported their results in the Journal of Clinical Investigation said they also found a way of avoiding the kind of intense political and ethical rows over embryonic stem cells that are hampering work in the US. “This technology bypasses the need for using human embryos,” said Dr Tamir Rashid of Cambridge’s laboratory for regenerative medicine, who led the study. “The cells we created were just as good as if we had used embryonic stem cells.” “This should open up a whole new sphere of research,” Dr Rashid said. “The cells exhibited properties of mature hepatocytes, such as albumin secretion and cytochrome P450 metabolism,” the research team reported. Dr Mark Thursz, a specialist in liver disease at Imperial College in London, said it was a major step that may in future be a potential source of new liver cells for patients with liver failure. Research work using human embryonic stem cells in the US was put on hold after a district court issued a preliminary injunction halting federal funding for it. • Abridged from http://tinyurl.com/2feofla (25 Aug 2010).
Hep B found among Mission of Mercy patients USA – Health officials have not found any additional cases of hep B among people treated at a free dental clinic last year since the announcement in June that five people developed the disease after the event. Berkeley County Health Department Administrator Bill Kearns told Berkeley County Commissioners that attendees notified of possible exposure in June are still coming in for follow-up testing. About 350 people have been tested, including those who were examined at a special clinic staged in June at Martinsburg High School, according to the health department. The three patients and two volunteers at the Mission of Mercy clinic who contracted hep B have recovered, health officials said at a June press conference. The Mission of Mercy project was an initiative of the Healthy Smiles Partnership and was sponsored by the United Way of the Eastern Panhandle. The clinic was at Hedgesville High School in June of 2009. Health investigators found no evidence that hep C or HIV were transmitted at the clinic, but all 1,110 patients were encouraged to be tested for those viruses as well as a precaution. The clinic’s 719 volunteers also were notified. • Abridged from http://tinyurl.com/28hgsak (2 Sept 2010).
St Vincent’s Hospital Viral Hepatitis Clinic – in Darlinghurst – is recruiting people for trials, including combination therapy and newly developed protease inhibitors. • For further information about, please contact Rebecca Hickey: ph 8382 3825 or rhickey@ stvincents.com.au or Fiona Peet: ph 8382 2925 or email@example.com
Image courtesy of Google Images
St Vincent’s viral hepatitis trials
news Sharing grows after Virus in Asian bats NSP closed could tell us more Canada – Sharing of used needles by Victoria’s about hep C injecting drug users increased substantially after the city’s only fixed needle exchange closed in 2008, according to a study by the University of Victoria’s Centre for Addictions Research. “There’s more reusing of needles as well. So people are using the same needle over and over again, which poses a number of other health problems like abscesses,” said study coauthor Andrew Ivsins, a UVic graduate student. The findings come from a sample of up to 160 illicit-drug users in Vancouver and Victoria who have been surveyed every six months since 2007. Researchers say the needle sharing can be explained by the closing in May 2008 of Victoria’s only fixed needle exchange. The report, called Drug Use Trends in Victoria and Vancouver, recommends reinstating at least one fixed-site needle exchange in Victoria along with mobile exchanges as part of a comprehensive range of services. It also calls for immediate abolishment of the current no-go zone for mobile distribution of needles in downtown Victoria so that they can be distributed where most needed.
USA – A virus found in Asian bats could offer insights into the origins of hep C and into the mechanisms by which infectious diseases move from other species to humans, according to researchers. Led by Dr Ian Lipkin at Columbia University’s Mailman School of Public Health, the researchers used gene sequencing methods, and confirmed the viral genetic material in the serum of five of 98 bats, and in the saliva of one, to be related to GBV-A and -C viruses. “This discovery underscores the importance of international programs focused on microbe hunting in hot spots of emerging infectious diseases,” said Lipkin. “Finding this novel flavivirus in bats significantly broadens the host range of GB-like agents and may provide insights into the origins of hep C,” added Dr Thomas Briese, lead molecular biologist on the team. • Abridged from http://tinyurl.com/2fqbeej (2 July 2010).
• Abridged from http://tinyurl.com/2bnoz3o (2 Sept 2010).
Have you recently contracted hepatitis C? Would you like to help with hep C research? Studies for patients with hepatitis C The Kirby Institute (formerly The National Centre in HIV Epidemiology and Clinical Research) is running an acute hep C study. The RAMPT-C study aims to explore reasons for transmission of hep C in men having sex with men. If you have been recently diagnosed with hep C (in the last 6 months) and believe that you might have contracted it within the last year or two, and you would like to know more about the study, please contact the study coordinator at St Vincent’s Hospital, Sydney: Rebecca Hickey on (02) 8382 3825 or firstname.lastname@example.org *The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee. HREC Ref: HREC/09/SVH/51
The Hep Review
news Stigma issues for heroin users UK – A life sentence of stigma prevents heroin and cocaine users from recovering and rejoining society, a commission has reported. The Government must tackle the “extreme prejudice” against drug users if it is to succeed in getting users off welfare benefits, back into work and playing a full role in society, the UK Drug Policy Commission (UKDPC) report said. The UKDPC study, which found Britons need to show more compassion if the current barriers to rehabilitation are to be overcome, comes as the Home Office signals a move towards a greater emphasis on abstinence and getting users completely free of drugs. Plans to withdraw welfare benefits from users who refuse treatment are also being considered. Charlie Lloyd, a senior lecturer at York University and the report’s author, said: “There is no getting away from the fact that our current society is none too keen on drug users, and even former users, but such attitudes betray a lack of understanding about the nature of addiction which is having many profound effects.” “Use of heroin and crack, in particular, can be seen to come with a ‘stigma life sentence’ which is a crucial barrier to recovery and rejoining society.” He said that one way of moving towards greater compassion was to learn lessons from the United States, where California governor Arnold Schwarzenegger holds a “recovery month” every September to educate the public about addiction. Professor Colin Blakemore, of the UKDPC, an independent body analysing the UK’s drugs policy, added that the terms “junkie” and “addict” were “pejorative shorthand for perceived social decay, conveying a sense of anxiety out of proportion to reality”. “Such hostile attitudes only add to the barriers of escape from drug dependence,” he said. • Abridged from http://tinyurl.com/2fff5wh (21 August 2010). Also see pages 33 and 51.
Egypt officials reject high hep C estimates Egypt – A new study estimates that around half a million people in Egypt are infected annually with hep C – far more than any country in the world – and that one in every ten people in Egypt has hep C. An important reason for the high incidence rate is the huge level of infection in the blood supply in Egypt, suggested Laith Abu-Raddad, a coauthor of the study. “Much more transmission is likely to happen in Egypt because the background prevalence is about 20 times higher [than other countries],” he said. However, the study’s findings have been rejected by the country’s Ministry of Health, Wahid Doss, director of the Egyptian National Committee on Viral Hepatitis. He said the figure published in the Proceedings of the National Academy of Sciences online was highly exaggerated. “According to our most recent survey, there are only some 100,000 new cases of hep C every year,” he told local newspaper Al-Masry AlYoum. But Abu-Raddad, who is an assistant professor in public health at Weill Cornell Medical College, Qatar, said he had anticipated the government’s rejection of the study’s conclusions. “Usually whenever a result is politically sensitive, the study is rejected,” he said. However, Mohammed Ezz Al-Arab, head of the Oncology Unit at the National Hepatology and Tropical Medicine institute said that “these [high] numbers might have been true ten years ago”. He said that most infected people are over 45 years old, as they were exposed to contaminated injections during Egypt’s anti-Bilharzia treatment campaign in the 1960s, which spread hep C. “Under the age of 15, the rates are really low because of a higher awareness nowadays due to the constant campaigns.” • Abridged from http://tinyurl.com/2e9byze (23 August 2010).
news Nicaragua to use Cuban hep B vaccine
Blood donation to blame for China’s high hep C China/USA – Forty million people across China are infected with hep C. Chinese and US researchers have said illegal blood donation is to blame for high levels in rural China. Although illegal blood donation practices were stopped by the Chinese government in the late 1990s, methods of collecting and storing blood need to be urgently improved to stop the virus spreading further, says the team.
Nicaragua – The Ministry of Health announced that it would begin using 140,000 doses of hep B vaccine donated by Cuba. Edmundo Sanchez, the ministry’s director of epidemiological monitoring, said they would vaccinate children up to 13 years old who were not vaccinated in previous years. The main goal is to cover 95% of children, the equivalent of 90,000 children, he said.
The researchers say their findings – and the fact that there is no vaccine for hep C – have worrying health implications for other developing countries as well, where blood donors are rarely tested for the virus before giving blood.
Speaking at a press conference, Sanchez said the vaccine was donated by the Cuban government and is ready to be distributed to health facilities, to begin the process of immunisation. Members of the army, the police and the prison system will also be vaccinated.
According to the team, the illegal pooling of blood from different donors and unhygienic methods used by commercial blood donation centres in the 1980s and 1990s in rural China have helped the virus spread much faster than it otherwise would have. Researchers from the Chinese Center for Disease Control and Prevention and the US University of Alabama tested more than 500 adults in the northwestern Chinese province of Shanxi for hep C. More than one-fifth of the villagers had sold blood, often to supplement their livelihoods, between 1973 and 1998. Overall, 8% of the villagers had the virus. But this figure rose to 28% when the researchers looked only at former blood donors. About 3% of nondonors had the virus. People who had received transfusions were also eight times more likely to get hep C than people who had never had one.
The Sandinista government has been carrying out a sustained vaccination campaign for the last three years, aimed at prevention, especially among high-risk groups, an initiative emphasised by the Pan American Health Organization (PAHO). Sanchez said that from next August, 400,000 Nicaraguan adults will be vaccinated, especially the elderly, for pneumonia. The immunisation campaign with a multi-vaccine against diphtheria, tetanus, whooping cough, hep B and meningitis, will be carried out in municipalities where there has been a lack of coverage. • Abridged from http://tinyurl.com/25goodh (23 July 2010).
The researchers say that despite illegal practices being condemned by the government, standards of blood collection and blood storage desperately need to be improved to stop the spread of the virus. • Abridged from http://tinyurl.com/2e8tf3u (26 Oct 2005).
The Hep Review
Image courtesy of Google Images
Hep C genetic tests Australia – Genetic fingerprinting may predict who will benefit from early hep C treatment and who will clear the virus spontaneously, new research shows.
Aussie genetic test gives hep C treatment odds Australia – Doctors at Melbourne’s Austin Hospital have developed a genetic test that can predict how people with hep C are likely to respond to treatment. Gastroenterologist Dr Paul Froomes said patients with hep C underwent 48 weeks of treatment, combining the drugs pegylated interferon and ribavirin. The treatment has been associated with a number of side-effects, including flu-like symptoms such as fever, chills, muscle aches and headaches.
The way doctors think about hep C treatment is changing, with researchers saying it is now possible to use genotyping to predict which patients are likely to clear the infection spontaneously and which will benefit from early therapy.
Dr Froomes said he approached microbiologist Dr Volker Gurtler to devise the genetic test nine months ago after breakthrough studies in Switzerland and the US found hep C patients who had a particular type of gene responded significantly better to the drugs.
A team of researchers, led by Professor Gregory Dore and Dr Jason Grebely, has determined that genetic changes near the human IL28B gene – linked to the ability to control hep C infection – may also be used to identify those people with recent infection whose own immune system is likely to clear the virus without therapy.
“If you’re positive for this genetic test, then your chance of eradicating hep C with current treatment goes up to about 80%,” Dr Froomes said.
“The use of human genotyping may change the landscape of how we treat patients with recent hep C infection,” said Dr Grebely, a lecturer in the Viral Hepatitis and Clinical Research Program at UNSW’s National Centre in HIV Epidemiology and Clinical Research (NCHECR). It’s the first time that patients with early hep C infection, who are likely to clear the virus on their own, might be identified and spared treatment, which is expensive and has side effects, Dr Grebely said. “IL28B genetic testing, prior to treatment for hep C infection, is likely to be incorporated into clinical care to identify those most likely to respond,” Dr Grebely said. • Abridged from http://tinyurl.com/2uwfs2o (28 Sept 2010)
“If you tested negative for this polymorphism, then your chance of responding to treatment falls to 30%.” He said patients who found they had a lower success rate for treatment could consider trying alternative new treatments. He said new treatments for hep C were “just around the corner”. Hep C causes liver inflammation and liver disease, and is spread through blood-to-blood contact. In May, the Heidelberg Leader reported an increase in hep C presentations at the Austin Hospital, including a number of patients infected through injecting drug use. Dr Froomes said the hospital treated about 400 patients with the virus a year. • Abridged from http://tinyurl.com/37dymj4 (27 Aug 2010). Also see page 17.
A quarter of us misuse alcohol Australia – Nearly one-quarter of the general population – and one-third of men – are likely to develop some form of drinking problem during their lives. The figures are part of new research that shows 18% of Australians will misuse alcohol, and a further 4% will become alcohol-dependent at some point. Yet continuing stigma and limited services mean only a fraction of those will receive help, with four out of five cases going untreated. The report, from the National Drug and Alcohol Research Centre, found the rate of alcohol problems in Australia is one of the highest in the world. Study lead author Maree Teesson said alcohol problems still had a “terrible stigma”. “People are much less likely to want to own up to having a problem with alcohol than they are about other physical or mental illnesses, yet their abuse of alcohol has serious consequences for them personally,” she said.
NSW Coalition would remove thousands from gaols
NSW – A coalition state government would slash the NSW prison population by a fifth by taking prisoners with mental health problems out of the criminal justice system and reducing sentences for a range of ‘’less serious’’ crimes. Shadow Attorney-General Greg Smith, a former Crown prosecutor, said he is planning to reduce the head count inside NSW gaols, which is set to soon push past 11,000. The reformist agenda, which would reduce sentences for minor drug offences, minor assaults, theft and fraud, is part of a calculated gamble to prevent the election in March next year descending into the traditional law-and-order auction for who can crack down hardest on crime. ‘’The state spends about $205 a day on every prisoner whereas you could be looking after them for $40-50 outside gaol.’’
Paul Haber, the director of the drug and alcohol service at Sydney’s Royal Prince Alfred Hospital and a co-author of the paper published in the journal Addiction, said the high rate of alcohol problems uncovered was a surprise, while the low levels of treatment were a disappointment.
Mr Smith said the Coalition had come around to a more moderate stance on sentences for less serious crimes because ‘’the current attitude is costing us all too much’’, adding that NSW will need to build one extra gaol every year at the current rate of detention.
The country’s “alcohol-consuming culture” was widely acknowledged as encouraging drinking problems, Professor Haber said.
• Abridged from http://tinyurl.com/3ahpldc (25 July 2010).
“Alcohol is cheap and readily available,” he said. Professor Haber said it was paradoxical that while many have no embarrassment about drinking large amounts of alcohol, admitting to an alcohol problem was still perceived by some as shameful. • Abridged from http://tinyurl.com/29sevvj (10 August 2010).
The Hep Review
news ACT opens up to prison needle exchange ACT – Chief Minister Jon Stanhope says he is now more open to the idea of a having a needle exchange in Canberra’s gaol. His government will review the situation in the Alexander Maconochie Centre at the end of the year and is keen to discuss the idea. Mr Stanhope previously opposed the program but says in light of the New South Wales Government’s decision to formalise an injecting room in Sydney’s Kings Cross, he will now reconsider the idea. “I am now far more inclined to look more positively at the possibility of needles being provided at Alexander Maconochie,” he said. Mr Stanhope concedes authorities are losing the battle against illicit drug use in the prison. He says it is within the prison’s duty of care to ensure the safety of prisoners and prison officers. “We have very sophisticated security systems but drugs are still finding their way into Alexander Maconochie, there are still injecting behaviours within Alexander Maconochie,” he said. Attorney General, Simon Corbell, says a drug problem in the prison will be investigated as part of the prison review. “The issue in relation to needle exchange is obviously balancing the need for safe, secure and proper order in the prison – for both prisoners and staff who work there – and the issue of transmission of blood-borne disease,” he said. The ACT Greens have been pushing for the Government to install an exchange since the prison opened. But the Community and Public Sector Union (CPSU) is against the idea. • Abridged from http://tinyurl.com/2uoj2bd (16 Sept 2010).
Tassie high school students at risk of hep C Tasmania – A group of southern Tasmanian high school students have undergone tests for possible blood-borne viruses after a teacher decided to take blood tests from a class. In the class experiement, 18 students from years 9 and 10 were attempting to test the pH levels of their blood. The science teacher made an attempt to sterilise the needle with methylated spirits between tests. Dr Roscoe Taylor, Director of Public Health said methylated spirits would not prevent the transmission of HIV or hepatitis B or C. “The risk of transmission is extremely low in this age group, but it is always a risk to share needles – this is an incident that should not have happened,” he said. Dr Taylor has urged parents of 18 students at the southern Tasmanian High School to take advantage of free precautionary tests for bloodborne viruses. Dr Taylor said the students had been in a science class on August 9 in which multiple blood samples were taken by finger-pricking with a single instrument. “Whenever blood is drawn, a freshly sterilised instrument should be used for each individual,” Dr Taylor said. “This did not happen in this case. “While the risks are probably extremely low, the possibility of transmission of a blood-borne virus such as hep B, hep C or HIV cannot be ruled out, if any one of those whose blood was drawn was carrying an infection. “This incident highlights the importance of being aware of the risks for the transmission of blood-borne viruses – sharing of needles in any circumstance carries a risk.” • Abridged from http://tinyurl.com/2bstbaa (8 Sept 2010).
Qld politicians ‘playing with lives’
news Hinch reveals he has liver cancer
Queensland – A doctor with decades of experience working with drugs says Brisbane must consider a safe injection centre to cope with rising HIV and hep C rates.
Victoria – Having doggedly resisted coming clean about his health problems in 2007, Derryn Hinch recently told his listeners he has liver cancer and, at best, could live for another five years.
Dr Wendell Rosevear believes both major parties in Queensland are putting people’s lives at risk after they strongly opposed such a facility for drug users.
‘’The news is not good. I have been diagnosed with cancer and it requires major surgery very soon,’’ Hinch, 66, said, his voice wavering slightly.
Advocates in the state have called for trial centres, similar to one in Sydney’s Kings Cross, to be established in Fortitude Valley and Palm Beach on the Gold Coast.
‘’I urgently need what they call a re-section, and that’s where the surgeon goes in and they remove about a third of your liver and he hopes what’s left can keep you alive and functioning while it regrows. And it can, although my liver is badly scarred from cirrhosis, so that of course decreases my odds of recovery.
Dr Rosevear won the Order of Australia Medal in 1998 for his work in illicit drugs and HIV/AIDS. “People who are dismissing it are only seeking to get political power by appeasing a vocal minority at the expense of people’s lives,” he said. Brisbane’s medical community is split on the issue, with support for the idea coming from the Australian Medical Association, the Queensland AIDS Council and the Injective Health Network.
‘’I’m told that 60% of people who have this condition and have this operation have a life expectancy of five more years. That’s not long but I don’t plan to be part of the other 40%.’’ The veteran journalist and broadcaster’s frankness yesterday was in stark contrast to his refusal to reveal the details of the illness with which he was clearly afflicted in 2006.
Drug outreach centres Drug Arm and the Gold Coast Drug Council oppose an injection room. National medical records show hep C rates in Queensland – mainly caught from using unclean needles – have remained relatively stable between 1995 and 2010. However, in New South Wales the rate has more than halved over the same period. Dr Rosevear said while the government was providing needle and syringe outlets, it was very hard for a drug dependent person to enter detox or rehabilitation programs. He said it was wrong to suggest Brisbane did not have the number of drug dependent people to make a injection centre viable.
He has claimed he used to drink up to four bottles of red wine a day, but has been sober since 2006. However, the damage he did back then may yet catch up with him. ‘’My own excessive boozing may not have caused this cancer but it certainly caused the cirrhosis that may scuttle my recovery,’’ he told his 3AW listeners yesterday. Hinch said he planned to put his experience to some use, by campaigning for organ donation and against alcohol misuse. • Abridged from http://tinyurl.com/243uayj (21 Sept 2010).
Health Minister Paul Lucas yesterday repeated his stance that Queenslanders would not accept an injection room.
NB: There is no suggestion that Derryn Hinch has viral hepatitis. Recent good news is that he has been accepted onto the liver transplant waiting list in Victoria.
• Abridged from http://tinyurl.com/2b4zv3w (27 Sept 2010).
The Hep Review
If I use drugs, can I still get treated for hep C? The short answer is YES, you can access hep C treatment if you use illicit drugs. It has been many years since the Commonwealth Health Department removed its ban to funded treatment on the basis of illicit drug use. The long answer is MAYBE, and this is because not all doctors are willing to treat people who use illicit drugs. The trick is to find doctors or clinics who will offer hep C treatment to people who have a drug dependency – and there have been projects to help increase the number of these doctors. Phone the Hepatitis Helpline to find out about options in your local area. Response from a treatment clinic... At our clinic, we treat people who are currently using illicit drugs. Some drug use – where there is no risk of reinfection – will not deter treatment. To get the best outcome
for each client, we consider everything that is going on in their life, not just any drug use but also their work, social and family situation as well as the state of general and mental health. Treatment can be tough, so a client will do best when the other things in their life are stable. Clinics will usually work with clients before treatment, connecting them with dieticians, social workers and psychologists to help get “treatment ready”. The reality might be that some of the outreach clinics are better for treating current users, so this might be a good place to start. If you want to talk about treatment (for now or later), call the Hepatitis Helpline for information and referral to a local clinic. Hepatitis Helpline
1800 803 990 (NSW) 9332 1599 (Sydney)
feature IL28B gene testing and treatment overview Genetic testing for people with hep C is one of the biggest developments in years. Toby Armstrong explores this new treatment-related blood test.
here’s been a lot of buzz about a genetic “signpost” which shows how likely hep C treatment is to be successful. That variation is found in the IL28B region of our genetic material, and is usually just referred to as IL28B. You might have heard about the new test and the influence it might have over treatment decisions and hep C research. Here’s a more detailed rundown of what it is and what it might mean for you. Discussion of IL28B has been circulating in academic journals since late 2009, but the news has only recently hit the mainstream. It’s all about a “genetic polymorphism” which just means there’s natural variation in genetic material between people, and some people have a variation which has a positive influence on treatment success. That variation is in people’s DNA: it’s not a characteristic of the virus. “IL28B” describes the location of that variation in our genetic material. By testing for that variation, we can now get a better idea of how likely a person is to respond to treatment. Having the favourable variation means your chances of SVR (Sustained Virological Response, also called cure) are twice what they would be without it. In one study, around 40% of Caucasian people without that favourable variation had an SVR, whilst 80% of people with the variation had an SVR. That doesn’t mean that if you have genotype 1 and the right genetics, you’ll have a 100% chance of curing your hep C. It just explains the variation in treatment response that already exists. This genetic variation doesn’t account for all the variations in response, and of course it’s still possible to have an SVR without it. IL28B testing may lead to more personalised (possibly shorter) treatment regimes after more study, and at the very least will help people to make better treatment decisions. For example, if you find that you have the responder genotype, then you might be swayed towards treatment. If you find that you have the non-responder genotype, you might wait for more effective treatments to become available. If you have severe liver disease that’s progressing quickly and you don’t have the favourable characteristic, you might be considered for a transplant earlier.
The favourable characteristic that’s being tested for is a “CC genotype”. There are two other possibilities: “TT” and “TC”. People with those genotypes have significantly less chance of clearing. “TT” is the least favourable (just over 30% of Caucasian people) and “TC” slightly better (around 40%). We already know that treatment response varied with ethnicity and IL28B goes some way to explaining why. The favourable variation is found more frequently in East Asian people, followed by Caucasian and Hispanic people and less commonly in people with African ancestry. According to the articles available, the genetic variation accounts for 50% of the difference in treatment response (they don’t talk about other factors). These results seem to hold for treatments other than the current interferon and ribavirin combination: it’s been studied with telaprevir too. It’s not clear how the variation might influence a treatment that didn’t include interferon (which we might start to see more of down the track). The differences in treatment success are independent of other pre-treatment variables, like gender, fibrosis stage and viral load. That could mean that we’ll see a whole new approach to how people are assessed for treatment, and that research into treatment is significantly different in the future. So what does this mean for you if you’re considering treatment? Well firstly it might mean that having an IL28B test is a good idea if you have genotype 1. Knowing if your chance of a cure is around 50% or around 80% might be one of the key factors when making your choice. If you have genotype 2 or 3, these tests won’t mean much for you: your chances of cure are probably around 80% already. This information might help you decide if current treatments are for you. If they’re not, remember to check back in a year or two if you’re still interested, because new treatments are being developed all the time. • If you’re interested in having the test, phone the Hepatitis Helpline. Your doctor should be able to order the test but would need special instructions. At the moment there is a cost of around $100.
The Hep Review
One for the road? Alcohol
Cutting back on alcohol is one of the most important steps we can take to help cope with hep C. Adrian Rigg reports on the various issues that are involved.
o one chooses to live with hep C, but most people choose to have alcohol as part of their lives . The problem for those of us with hep C is that both alcohol and hep C affect the liver. So is any amount of alcohol safe for people who have hep C? Opinions differ, but it is known that heavy drinking accelerates progression of hep C and increases liver damage. Most doctors will advise people with hep C to reduce or cut out alcohol, especially if they have cirrhosis. However, many health professionals believe that moderate amounts of alcohol are not harmful for people with hep C who have no liver damage. General recommendations that people with hep C consume less alcohol are largely aimed at getting people who drink large amounts to cut down. Social acceptability Alcohol is legal and more socially acceptable than illicit drugs. Because of this, alcohol can cause fewer personal problems than other drugs. On the other hand, this makes it harder to avoid; it may be difficult for some people to abstain when drinking is such a large part of their social lives. Cutting down on alcohol can also attract attention from friends, which may cause problems around hep C disclosure. David was a social drinker before starting treatment, but when he was advised to avoid alcohol he took it very seriously. “I didn’t drink for a year,” said David. “I was a pretty moderate drinker before that. Most people didn’t know I had hep C, but it wasn’t a problem for me not to drink.” David found at that stage of his life he was able to turn down a drink and not create an issue in his circle. He admits that if it had been earlier in his life, when drinking with his mates was more of a social staple, it might have been an issue. Most people living with hep C have injected drugs at some time, and some will have dependency issues throughout their lives. Some people in this situation consider alcohol to be a pretty low-level concern compared to other stages of their lives, and are willing to accept any risks that go with it.
Enjoyment vs. risk A simple reason that people drink alcohol is for enjoyment – the pleasure of relaxing with friends and the pleasure that alcohol can provide. A person’s relationship with alcohol can become much more complex when it is tied up with feelings of guilt. Counting each drink, and thinking about its effects, can take the pleasure out of social drinking and cause anxiety. Some people may decide that the pleasure of a few drinks outweighs the possible risk of liver damage; drinking, especially when relaxing at the end of the day, may relieve stress and be part of a person’s coping strategy. Rob was diagnosed with hep C in 1994 and was advised to cut out alcohol altogether, or minimise it at the very least. At 26 years of age, he didn’t worry too much about this advice and thought that it was something he could deal with in the future; he felt that there was not a lot of support for, or interest in, people with hep C at that time, and that as a young, healthy man he probably wouldn’t have sought help anyway. When Rob started treatment several years later, he decided that he was going to do everything he could to help his chances of clearing hep C, including giving up alcohol. “I probably drank on three or four occasions – more to preserve my sanity. But man, did I feel guilty about doing it. Going through so much only to possibly jeopardise it by drinking messed me up,” said Rob. Some personal support, and information about the potential risks in small amounts of alcohol, would help individuals make their own decisions about drinking, and could help avoid such anxiety. Rob didn’t have any social problems with abstaining, as he told everyone that he was undergoing treatment. He also had great support from his health professionals and was offered the services of a psychologist and a psychiatrist; this helped him complete treatment and clear hep C.
Image by mangpages, via www.flickr.com
and hep C
Individual circumstances It is much too simple to say that people should just drink less; there are so many factors involved with the reasons people drink alcohol, and they vary greatly between individuals. Professor Greg Dore, Head of the Viral Hepatitis Clinical Research Program at the National Centre in HIV Epidemiology and Clinical Research, advocates individualised advice, tailored to be most effective for a person’s circumstances. “My belief is that advice around alcohol intake for people with hep C should be based on an assessment of underlying disease stage and duration of infection,” said Professor Dore. For example, he suggests that a person with no significant fibrosis who has had hep C for more than 15-20 years could drink at levels recommended for the general population (if their liver is regularly assessed), whereas a person with severe fibrosis should abstain. This demonstrates the importance of a good relationship between an individual and their health professional; if a GP knows their patient’s history and something about their personality, they can help them identify and avoid the triggers that lead them to drink too much. A patient who doesn’t feel comfortable with their GP may not be
open about their alcohol consumption; this can hinder the monitoring of possible liver damage. Communication may also break down if the same conversation is held at every consultation; patients may feel they have to justify their drinking, and health professionals may feel they have to tell them to stop it. A more tailored approach could have the GP introducing the topic in different ways and at a level appropriate for the patient. Dr Alex Wodak, Director of the Alcohol and Drug Service at St Vincent’s Hospital Sydney, feels that support to help people with hep C reduce alcohol consumption is essential. “The suggested guidelines [two standard drinks per day] are the easy part,” he said. “The more difficult part is trying to get patients to achieve this, and trying to bring to their attention the services available to help people reduce consumption to these levels.” He believes that health professionals should provide their patients with a range of options for how they can cut down on alcohol, and that the message should be reinforced as often as possible. Many people choose not to seek professional help to stop drinking, but may find ways to deal with it themselves. However, support options can be offered in a non-confronting way as part of regular consultations.
The Hep Review
Image by mescon, via www.flickr.com
Alcohol and hep C treatment Most health professionals would recommend avoiding, or at least cutting down, alcohol during and prior to treatment. When discussing treatment, health professionals and patients need to consider the likelihood of clearing hep C; including factors such as the person’s IL28B gene, their hep C virus genotype, their liver health and their likelihood of completing treatment – taking into account lifestyle factors such as alcohol consumption. Alcohol can interfere with the immune system, and also make interferon, and therefore treatment, less effective. It can increase the severity of some side effects of treatment such as depression, which can make adherence and completion more difficult. Heavy use of alcohol can also contribute to a chaotic lifestyle, making the regular routine of treatment harder to manage.
Magdalena Harris, in her paper “Pleasure and Guilt: Alcohol Use and Hepatitis C”, based on a study of people with hep C in Australia and New Zealand, found that some people find it easier to avoid alcohol and situations where alcohol is present, rather than trying to reduce it. Deciding to drink no alcohol at all could work better for people who have difficulty limiting their drinking; it may be easier to abstain than to expose themselves to any alcohol at all. There is also the issue of the way advice is given – being told to drink sensibly is a vague concept, and some may interpret this as permission to drink as much as they previously did.
The choice to reduce alcohol
Alcohol is another item on the list of everyday issues that people with hep C need to reconsider. There are many recommendations for reducing alcohol consumption, such as alternating alcoholic and non-alcoholic drinks and opting for low-alcohol drinks, but personal circumstances and health, along with professional support, are the most important factors in deciding how to approach this most important issue.
Dr Wodak believes that reducing alcohol intake is the single biggest factor in improving the health and wellbeing of people with hep C in Australia.
• Adrian Rigg is a freelance health writer who regularly contributes to The Hep Review. email@example.com
If alcohol will be a factor in the success of a person clearing hep C, then dealing with it should be a part of treatment.
“We don’t know how much is safe,” he said, refering to alcohol and people with hep C. “We know that less is better and abstinence is best.” He points out that hep C treatment uptake is still relatively low, and that programs achieving widespread alcohol reduction would be easier to achieve and would help reduce long term liver illness.
To talk about alcohol and your health, contact the Alcohol and Drug Information Service: 1800 422 599 (NSW country) 9361 8000 (Sydney) or the Hepatitis Helpline: 1800 803 990.
Men’s liver health campaign
Hepatitis NSW recently ran a campaign aimed at persuading people to better look after their liver and it targeted men – those who have most to lose.
uring October and November this year, Hepatitis NSW ran a series of health promotion advertisements in four men’s lifestyle magazines. The advertisements promoted awareness of liver disease risk factors among men aged 35-60, and provided advice about monitoring liver function through LFT testing in annual health checkups.
The campaign targeted men because in Australia, statistically more men have hep C and they are also over-represented in hep C illness and death. Additionally, Medicare statistics show that men don’t tend to visit GPs as much as women. The magazines that we chose included Alpha, Rugby League Week, OzBike and Australian Tattoo; giving a combined readership of close to 250,000 people across Australia. We feel the advertisements will lead to greater numbers of people speaking to their GP – and possibly being tested for viral hepatitis. We also hope they will lead to better liver self care, specifically, lower levels of risky drinking. A third potential beneficial outcome is greater numbers of people making a greater effort to lose weight and lessen the chance of liver complications that can occur when people develop type-2 diabetes or fatty liver (caused by obesity). We’ll report more on the campaign following its upcoming evaluation. •
The Hep Review
my story Wayne’s story: party time ‘n’ moving on
y name is Wayne and I am 51. I left high school when I was 15. I had my parents’ permission as long as I got a job. My father encouraged me to drink at a young age and we didn’t have a good relationship together. I am one of five kids and I used to be flogged a lot – not that this is an excuse for the life that I have led. After work I would go home, then go for a few drinks up the pub. I got to know a lot of older people with whom I started smoking pot. By the age of 18, if there was no pot around, I would have the occasional hit of heroin. My drug use wasn’t a problem as the heroin or other drugs I took – LSD, speed, morphine, methadone – never got me addicted. It was just party time. I always worked and never missed a day. I met my partner, Karen, when I was 18. She was 32 and we struck up a good relationship. We do everything together.
than 12 months. I was full of fluid – a condition called ascites – and was told to contact the RPA Hospital liver transplant unit. This scared the crap out of me. After five years of travelling down and back up, we decided to sell up and move back down to the Central Coast. We invested our money and are renting while we wait to hear how things will go with my health. I’m at the stage now where I’ve done all the tests and am waiting to see if I am suitable for transplant. My only concern was having a transplant and still having hep C. RPA organised a little conference where I got to speak to two guys who had transplants – and who also had hep C. Karen and I finally got married after 30 years together. We have both been positive about my outcome all through my sickness and remain so.
By the time I was 23 we’d had enough of the party life. We knew a lot of users and many people around us couldn’t be trusted anymore. So we moved to the Sutherland Shire, keeping the same jobs. We worked hard and drank a lot and we were happy.
Karen also had hep C – genotype 2. She got treatment because she stopped drinking. She spent almost six months in bed in 2007 and is now clear of hep C. I had to give her all the injections because she hated doing them. She said it’s now her turn to look after me.
A few years later I was 30 and we moved to the Central Coast and bought our first house. Two years later I didn’t feel well and went to the doctor. He did a range of tests but found nothing wrong. Still feeling crook, I went back a couple of years later and this time he asked if I had ever used drugs. He did a hep C test and it came back positive.
Of the two of us, I’m the cook but I’m starting to go off my food and have to take supplements to remain strong enough for the operation. I’ve been put on the waiting list and have started having appointments with all the surgeons involved. I’m having fluid removed from my stomach, which helps relieve some of the pain and discomfort.
We sold up and moved up to the mid-North Coast, near Macksville. I started to enjoy good times, playing golf, fishing, and a great 40th birthday where I had a few drinks. Next thing, I was 44 and still drinking. My doctor told me if I didn’t stop drinking I wouldn’t live more
We are going to move down to Newtown to be closer to RPA Hospital because I’m not supposed to be driving and it will make it a bit easier for Karen. I guess that’s about all I can tell you at this time so I’ll sign off and hopefully get back to you after my operation. Wayne, NSW
Image by AndyeMcee, via www.flickr.com
I was booked in to see a specialist, who told me that I also had cirrhosis of the liver. I wasn’t offered hep C treatment but he told me to stop drinking – which I did at the age of 36. I soon had to go on Sickness Benefits and then on to the Disability Pension.
obituary Bruce Thompson J Bruce Thomson 21 April 1944 to 12 October 2010 We say our sad farewells to Bruce Thomson, Life Member, long standing volunteer and friend of Hepatitis NSW, who has died after a 54 year battle with Type 1 diabetes. Bruce was a regular volunteer worker with us, helping particularly with the teams who mail out The Hep Review. Bruce was born in Melbourne and worked in the insurance industry for many years. Immediately following his retirement, Bruce began as a regular volunteer worker for the Hepatitis C Council of NSW in January 2001, as well as for a range of other charities. Life Membership of our organisation was conferred on Bruce in November 2004 in recognition of the work he had done for the communities affected by hepatitis C. Our love, thoughts and best wishes go to his brother Ian and to his godson David and family – Kate, Brenton and Holly – and to Bruce’s other relatives and many friends. Our thanks and love go to you Bruce. May you rest in the peace you so wonderfully deserve. Hepatitis NSW Bruce, pictured at our end of year party, 2005. Image by Stuart Loveday
A keyhole to our work Continued from page 3. Talking to young people about injecting drug use, however, can be difficult. The body-art focus of this project aims to open up discussions about hep C in a space where both youth workers and young people can feel comfortable, and in which risks associated with injecting drug-use can then also be discussed. This project will aim to educate young people about the risks involved with any form of skinpenetration as well as increasing the capacity of youth workers to engage in discussions around
hep C and drug use. It will also give young people an opportunity to contribute to resources aimed specifically at them by coming up with tattoo designs. These designs will be submitted to a state-wide competition and winning entries will be used to produce temporary tattoos bearing hepatitis information to be distributed during NSW Hepatitis Awareness Week 2011, starting 25 July. • Hepatitis NSW
The Hep Review
Show me the money: GWAHS’s hep C funding question
Money earmarked for hepatitis C within the Greater Western Area Health Service budget appears to have gone missing. Peter Lavell attempts to find some answers.
etween $300,000 and $400,000 earmarked for expenditure on hep C programs appears to have gone missing. Stuart Loveday, Executive Officer at Hepatitis NSW, believes the money was used to help the cash-strapped Greater Western Area Health Service (GWAHS) reduce its burgeoning budget deficit. The money was part of an injection of funding for hep C services made to each of the Area Health Services in 2008, made possible from savings from the $70 million annual NSW HIV/AIDS Infectious Diseases budget, said Loveday. A review of HIV/AIDS services by NSW Health in 2007/08 found areas of savings, which were then allocated to each the NSW Area Health Services for hep C-related purposes. The amount contained a one-off component for special projects, and an ongoing component for continuing services such as salaries for new nursing staff positions.The money was to be spent by June 2009. Loveday said in the case of the GWAHS, the ongoing funds appear to have been properly allocated; but the one-off funds remain largely unaccounted for. Approximately $30,0000 was spent on employing a consultant to prepare an Area Health Services Plan, which was to recommend how the increase funding was to spent. It was delayed but eventually published this year, said Loveday. There was also a modest grant given to Melbourne theatre company Ilbijerri Theatre
to tour their acclaimed Theatre-In-Education play “Chopped Liver” throughout the rural area. But the bulk of the funds, an amount between $300,000 and $400,000, has simply gone missing, he said, with no new spending on hep C-related projects by the GWAHS that would account for it. Meanwhile the GWAHS has been running large annual budget deficits, to the point where suppliers have cut off supplies to hospitals in the GWAHS because their bills haven’t been paid, he said. The GWAHS has been under enormous pressure from NSW Health to gets its budget deficit under control, said Loveday. “We’ve been told informally by employees of NSW Health that the one-off money earmarked for hep C projects was simply used to help reduce the GWAHS budget deficit,” he said. “There is no way of knowing for sure, because there are no publicly accessible mechanism in NSW Health or the GWAHS to track how the money was spent,” he said. He said he has written to the Chief Executive of the Greater Western Area Health Service, and to the NSW Minister for Health, Carmel Tebbutt, to try and find out hat happened to the money, but has had no reply. Other Area Health Services appear to have properly spent the additional funding they received, he said. Some used the extra funds to buy Fibroscan machines, which provide diagnostic testing that detects liver fibrosis, and avoid the need for an invasive liver biopsy. Each fibroscan costs around $130,000. “We’d like to see the money spent on the services it was intended for,” said Loveday. “The money could go towards a fibroscan and to fund the position of a health worker to help coordinate hep C services and help build much-needed hep C treatment capacity – this would also help increase Aboriginal people’s access to services,” he said. The GWAHS has more need for hep C services than other Area Health Services due to its size and the remoteness of many of its communities, and because hep C is more prevalent in indigenous communities than elsewhere in NSW, he said.
• Peter Lavelle is a freelance health writer who regularly contributes to The Hep Review. firstname.lastname@example.org 24 www.hep.org.au Image by Tamsin Slater, via www.flickr.com
Little Book of Hep C Facts
ver won a lottery? If you have, you probably know how I feel right now – like one of the luckiest guys around!
I finished a 48 week trial of a new hep C tripletreatment on 30 June this year. It involved Vaniprevir, one of the new protease inhibitors, and current combination therapy. The first half of my story was covered in “Twentyfive years on, and twenty weeks to go”, a personal story in Edition 69 of The Hep Review. Now, three months after the trial finished, I am PCR negative. Both my trial doctor and local GP (who gave me the test) assure me that three months is the new point where “cure” can be measured and as you’d imagine, I am over the moon. While on the trial, I got good support from the staff at St Vincent’s, my workmates and family. I cut back on alcohol to 1-2 standard drinks a day and coped pretty well. There were some moody moments and tantrums were thrown, but it was gardening tools or other inanimate objects that suffered, although the family pet got a bit worried once or twice. Probably the worse side effect was the itching. Maybe the virus knew its time was up and by getting me itchy to the point of bleeding legs almost every day, it was giving itself a chance to escape. But that is all history now. These days I find myself thinking of how I’ve cleared my hep C and I’m quietly smiling to myself – a beaming happy inwards and outwards smile – and I think that’s how I’d be winning a lottery. •
We recently covered hep B facts but do you know your facts about hep C? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep C Facts, Hepatitis C Council of South Australia. • Hepatitis C (hep C) is a blood-borne virus that causes inflammation of the liver. Over time this may lead to scarring of the liver and serious disease. • There are many strains (genotypes) of hep C. The most common genotypes in Australia are 1, 2 and 3. • It is possible for a person to have more than one strain (genotype) of hep C. • Hep C is totally different from HIV/AIDS. Infection with one of these viruses does not lead to, or protect against infection with the other. • Hep C is transmitted by blood-to-blood contact.
Image by Paul Harvey
• In Australia, the most common way hep C is transmitted is by sharing injecting equipment, including spoons, tourniquets and filters. This is the first instalment of our excerpts from The Little Book of Hep C Facts. Please see our following editions of The Hep Review for all 34 hep C facts – or check out the booklet at http://tinyurl.com/2en75mx
The Hep Review
Image by semireal_stock, via www.deviantart.com
my story Paul’s story: patience and persistence
What’s driving the fear factor? Hep C Hep C discrimination in the workplace leads to many people working under unwanted pressure. Peter Lavelle reports on this long-term ongoing issue.
aving hep C is a tough road to travel. Not only do people with the condition often have to face the effects of the illness and the side effects of treatment; there’s the question of whether they reveal it to their employer and work colleagues. If they do they can expect to be discriminated against. That’s the finding of a seminal report called C-change: the report of the enquiry into hep C related discrimination released by the Anti-Discrimination Board of New South Wales in 2001. “Hep C is a highly stigmatised condition and discrimination against people with hep C is rife,” the report found. And the reason? “Much of the fear is irrational, driven by ignorance about hep C and how it’s spread. But the main driving force behind the fear is its association with injecting drug use, a highly stigmatised behaviour,” the report concluded. Because hep C is spread in 80% of existing cases by blood-to-blood contact during injecting drug use, people in the broader community invariably associate hep C with injecting drug use. This stigma still remains, ten years after the report; and most people with hep C still experience it, say solicitors and counsellors working with hep C. It’s ironic because, while some people who have hep C still use drugs, most are people in their 40s and 50s who used intravenous drugs when they were in their teens or 20s but have moved on from illicit drugs, and often have good jobs and families, and lead productive useful lives, according to Niki Parry, who coordinates the Hepatitis Helpline, a freecall information and support phoneline run by Hepatitis NSW. So these people are being vilified for past behaviour. And the stigma can extract a heavy toll on their health, their finances, and their social lives. Hence, many people simply choose not to disclose they have hep C, says Ms Parry.
In fact there’s no legal obligation for anyone to tell employers or anyone they work with that they have hep C unless they want to, she says (the exception being in rare cases, such as certain jobs in healthcare which involve exposure-prone procedures; or employment in the Australian Defence Forces). However, keeping it to yourself may not always be possible, or even desirable. “One of the problems people with hep C have, particularly if they’re on treatment, is that it’s often obvious to others there’s something going on. There may be weight loss or other changes, such as hair loss. Or they may feel unwell and may need to take time off. In these cases people may have no choice but to tell their employer about it,” Ms Parry says. Some employers are very cooperative. They may be sympathetic, compassionate and help with things like time off, or they may arrange your workspace and working hours to ensure that you’re comfortable or make other changes to the job to make it easier to cope with being at work. In this case there’s obviously a net benefit in disclosure. But in many cases, this doesn’t happen. Instead, a person can be subjected to a range of direct and indirect discriminatory behaviour, ranging from social ostracising, to being denied job opportunities they normally would have been given, simply because they have hep C. It can affect relationships with others in the workplace. “People who disclose their hep C status may be ostracised and isolated, and kept out of the loop with what’s going on socially. It can manifest in back-stabbing and negative gossip going on behind that person’s back,” she says. There’s often an assumption that people with hep C are currently injecting drugs, or have issues around drug and alcohol use, she says.
discrimination in the workplace
It can make people feel isolated, suspicious of others, anxious and depressed, and can, in turn, affect their work performance. To complicate matters, many people with hep C are aware of the possible discrimination they may experience, and often assume it will happen, even when it doesn’t. “People with hep C can bear a lot of guilt because of their past association with drug use, even if it was many years in the past,” Ms Parry says.
This perceived discrimination can be just as destructive as the real thing. The pressure not to disclose, to keep it secret, does nothing to demystify the condition and reinforces the widespread misunderstandings about it. One serious problem is that the discrimination – or the fear of it – is strong enough to actually deter people from seeking treatment. People in sensitive positions, for example teaching or health professions, may decide not to seek treatment for fear of the effect this may have on their professional status if they disclose they have hep C or are being treated for it.
The Hep Review
Image by tx_shooter, via www.flickr.com
“If someone is tired or feels sick, and has a day off, then it might be assumed it’s because of drug use,” she says. This can inhibit the person from requesting time off when they need it.
feature On the other hand, in some workplaces there is no problem, particularly once the person with hep C explains the situation in more detail and breaks down the misconceptions and stereotypes. Little white lies Ms Parry says some people get around the problem by partial disclosure. So they may say only that they have “a liver condition”, for example; or they may disclose having hep C, but are vague on the details of how they acquired it, attributing it to a blood transfusion or some other cause. Often colleagues don’t press for the details. Whether and how much a person discloses about their hep C status depends very much on the circumstances and each person has to make a judgment about what’s best for them.
When applying for a job, if you’re asked about your health, you do not have to answer any questions about hep C unless it is critical for that job (e.g. some healthcare jobs where blood-to-blood transmission is a possibility). If you do disclose you have hep C, any information that you give to your employer or others you work with is private and confidential and no one can pass this information to another person or agency without your permission. Given that many people with hep C on treatment are going to have to disclose it, there’s still a very high risk that they will experience some form of discrimination. If this happens, what can they do about it? Again this depends on the situation. “We encourage people to try and talk about the situation with colleagues and try to resolve the issues if they feel comfortable about that,” Ms Parry says. Many companies have internal complaints resolution processes and human resources departments that will try and resolve the issues.
The law and how to access it People with hep C do have one advantage; they have the law on their side. Indraveer Chatterjee, solicitor at HIV/AIDS Legal Centre (a free service which also advises and acts for people with hep C) says that discrimination against someone with hep C is illegal. Like HIV/AIDS, hep C is classified as a disability and covered by antidiscrimination legislation (specifically, the state and federal Antidiscrimination Acts, and also the discrimination provisions in the Fair Work Act). Under these laws, for example, employers have to make changes to workplace practices to accommodate a person’s disability, unless the changes would cause serious economic loss to the employer. Mr Chatterjee says if someone with hep C believes they’ve been discriminated against, they can take action under these laws. Potentially they can take an employer to court to obtain redress (although about 90% of cases are settled without going to court, he says).
legal centre is now able to offer free help with hep C legal issues
HALC is a community legal centre providing free advocacy and advice. Our solicitors understand the needs of people living with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at email@example.com or telephone us on 02 9206 2060.
If the complaint is upheld, it may result in the employer agreeing to an apology, or reinstating a job, or providing anti-discrimination training for staff, or even paying financial compensation for pain and suffering and/or loss of income. However, going down the legal path is not always easy. The way the law works is that the onus is on the person with hep C to prove that what happened to them happened for discriminatory reasons. That can be tricky, Mr Chatterjee says. Theoretically, any action that is detrimental to you, and differentiates you from the way others are treated, is potentially discriminatory. “Things like not letting you do certain kinds of shift work, not letting you work in a kitchen, limiting your interactions with customers, removing supervisory responsibilities, or being passed over for promotions, are definitely discriminatory,” Mr Chatterjee says. But when it comes to social ostracising or being ignored, it’s more difficult to prove that it was because of a person’s hep C status. “But it could be; it depends on the context,” he says.
Hence he believes it’s important to get advice; either from a legal service or your union. He suggests getting advice earlier rather than later. It’s easier to prevent discriminatory behaviour, rather than suffer the consequences of it and have to take action afterwards. “Even if you don’t proceed with legal action, it’s useful to know your rights and responsibilities and knowing what the employer can and cannot do. If an employer realises you’ve obtained legal advice that will often improve matters, because most employers don’t want to be seen to be embroiled in a discrimination case,” he says. A lawyer or union representative will often help negotiate an outcome with the employer. Wondering what your first step might be? Phone the Hepatitis Helpline for more information. • Peter Lavelle is a freelance health writer who regularly contributes to The Hep Review. firstname.lastname@example.org
Charting Health Impacts
The CHI (Charting Health Impacts) study is about how hepatitis C affects people’s lives. The study follows a group of people over time, looking at all the health and social aspects of life - so that community organisations, doctors and governments learn what it is like to live with hepatitis C.
Joining the study involves taking an anonymous survey online. We then contact you in 3-6 months so you can tell us how things have changed for you. If you have ever been told that you have hepatitis C and you want to find out more about CHI, you can check out our website at www.chistudy.org.au Let your experience count and let us know about how hepatitis C has affected you. The Hep Review
How Veins Collapse l
This causes tiny clots to form on the lining of the vein. These tiny clots roughen the lining causing more turbulence - and the formation of more small clots. Gradually the vein fills up with the clots and blocks.
Introducing a needle (that tears and scratches the vein lining) and then drugs (that can irritate and cause swelling of the vein lining) creates turbulence in the blood flow.
If blood is unable to flow smoothly it clots. The lining of arteries, veins and capillaries is perfectly smooth so that the blood can flow without clotting. The reason blood clots when you cut yourself is because as it leaves the blood vessels it stops flowing smoothly.
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.
Safer Injecting Procedures
The Hep Review harm reduction poster, Dec 2010 (#26). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au
4 Finally, the edges of the vein heal together and the vein collapses as the scar tissue draws the sides together.
2 Clots form in the turbulent blood around the site.
1 Injection can scratch the inside of the vein and leaves a hole which, during healing, roughens the lining of the vein.
Veins that are damaged or swollen may partially recover, but collapsed veins never recover. The blood finds another way back to the heart and lungs through smaller or deeper veins further back down the system.
The clots then turn into scar tissue which shrinks, pulling the sides of the vein together, leaving it 'collapsed'.
3 As the vein becomes narrower the turbulence increases and the clots form more quickly.
The Hep Review
opinion Safe injecting centre is here to stay
t was of little surprise that the announcement by the NSW Government to end the “trial” status of the Medically Supervised Injecting Centre in Kings Cross again triggered serious discussion. Our decision was not taken lightly. Neither was the decision in 2001 to introduce the centre following the Drug Summit. Through the 1990s, the seriousness of the drug problem had intensified. Kings Cross had become a particular hotspot, as the area with the highest concentration of overdose deaths in the country. The Government recognised a new approach was needed to reach marginalised and long terminjecting drug users, many who had never sought treatment before. [We] had to deal with the world as it was, rather than as we would like it to be. The centre gave users a supervised location where they could access emergency help, medical advice, and support and counselling services. From the outset the centre has been bound by strict objectives, and rigorously evaluated against those objectives. These objectives are that the centre decrease drug overdose deaths; provide a gateway into treatment and counselling; reduce the problem of discarded needles and users injecting in public places; and help reduce the spread of diseases like HIV and hep C. Our announcement to introduce legislation to remove the “trial” status reflects the centre’s overwhelming success against these objectives. After nine years of successful trialling and extensive monitoring, we can clearly say this is a facility that saves lives, helps drug users with their addiction and improves living conditions for local residents. Among many findings, the most recent independent evaluation of the centre found that it had successfully managed 3,426 overdoses, referred more than 8,500 drug users for help – including 3,870 to drug treatment – and helped reduce the proportion of local residents who report seeing public injecting from 55% in 2000 to 27% in 2010.
Image via Google images
Carmel Tebbutt, NSW Minister for Health, discusses the decision to legitimise the Medically Supervised Injecting Centre.
I met Kings Cross Local Area Commander, Superintendent Tony Crandell, who described how his officers had encountered far fewer cases of drug overdoses in the back lanes of Kings Cross since the centre started operating. The evidence stacks up, and the time is right to make this centre a recurrent health program. Many supporters of the centre have asked why the decision has taken so long. Given the weight of evidence, it’s a reasonable question. The Government has taken a considered approach. The injecting centre is not one that falls within the usual definitions of treatment, and it has been prudent to allow the centre to demonstrate its effectiveness over a longer period of time. The removal of the trial status now means the future of the centre won’t repeatedly be a political football. The centre will still be subject to stringent monitoring. There will continue to be regular statutory evaluations every five years, an independent evaluation after four years, and NSW Health will continue to conduct routine inspections of the centre. Staff at the Medically Supervised Injecting Centre do a tough job under difficult circumstances. They are saving the lives of some of the most marginalised people in the state, helping them get treatment and, for some, turning lives around. The decision will give the centre greater certainty about its future, and allow it to attract and retain quality staff, and continue to reach out to people in need. • Abridged from http://tinyurl.com/2uzl9un (16 Sept 2010)
feature Ageing drug users face health problems Most people with hep C contracted the virus through injecting drugs. Have you thought about the issues for people who inject drugs and are ageing?
Mental health problems were also common among the group studied. Memory loss, paranoia and fluctuating mood states were some of the conditions experienced. Most noticeable was the sense of loneliness and isolation felt by these ageing drug users.
he more I seem to get older, the more it seems to get worse. At 56 now, I shouldn’t be doing this. I shouldn’t be going out grafting and then running round like a 19-year-old scally looking for heroin and coke. Like I shouldn’t even be on methadone now. It’s madness.
“Old age is normally associated with isolation,” says Dr Beynon, “but older drug users tend to sever links with family and [people who don’t use drugs] so their pool of peers grows smaller and smaller all the time.”
These are the words of a 56-year-old male drug user. Research from the UK Centre for Public Health in Liverpool shows he is representative of a vulnerable group of people who are long-term drug users now reaching retirement age. As children of the 60s, they would have started using illegal drugs when it was cool and fashionable to do so. Forty years on, what impact has their addiction had on their physical and mental health?
Statistics show that this is an international problem. The European Monitoring Centre for Drugs and Drug Addiction estimates that the number of people aged over 65 and needing treatment for drug problems in Europe will double between 2001 and 2020.
Dr Caryl Beynon, from the Centre for Public Health at Liverpool John Moores University, studied a small group of people aged 49-61 who had all sought help from drug treatment services.
The Scottish Drugs Forum (SDF) calls older drugs users in Scotland “a forgotten generation”. In research from 2009, the SDF estimates that there are about 15,000 older drug users (aged 35 and over) in Scotland, making up about 27% of the 55,000 people with a drug problem in Scotland.
She describes a new phenomenon of ageing drug dependents who started taking drugs for recreational use in the hippy era. While some drug users were simply experimenting in the 60s and 70s when drugs were more widely available, others started taking drugs later following a stressful event, like a family bereavement or the breakdown of a relationship, she says. And some continue to use them now. “All our focus historically has been on young people and how to treat their addictions. But perhaps we should have specific services for older drug users because they have completely different issues,” Dr Beynon said. They have high levels of ill health brought on by drug use. Most admitted to suffering from physical conditions including circulatory problems, respiratory problems, diabetes, hepatitis, weight loss and malnutrition.
Recent research from the SDF, which is part of a wider European study into the current and future needs of older drug users, shows that many older users are Old Aged Pensioners before their time. They display patterns of social isolation and physical debilitation more frequently associated with people in their 60s, 70s or beyond, the research says. Brenda Roe, professor of health research at Edge Hill University, said further research is needed “to enable health and social care professionals to develop appropriate services for this increasingly vulnerable group”. “We also feel that older drug users could play a key role in educating younger people about the dangers of drug use,” she said. • Abridged from http://tinyurl.com/24m4dss (11 Sept 2010).
The Hep Review
How did I get hep C?
Australian researchers explore people’s awareness of how they contracted hep C.
n 2009, the National Centre in HIV Social Research (NCSHR) and the National Centre in HIV Epidemiology and Clinical Research (NCHECR) conducted a qualitative study to explore people’s awareness of how they contracted hepatitis C (hep C). Who participated in it? We interviewed a total of 24 people who reported they acquired hep C in the two years prior to the study. We advertised for people to participate through Hepatitis NSW and NUAA. We also recruited people through another research project. Once people made contact with the researchers, we went through a short screening survey with them. Participants were recruited from a variety of locations throughout Sydney and regional NSW. We had approval from the Human Research Ethics Committee of The University of New South Wales. We provided participants with $30 reimbursement for their time and expenses. No real names have been included in this report. Did participants want to know how they got hep C? We asked participants how they thought they got hep C and whether they wanted to know how they got it. Two types of responses were given. In the first, participants were generally curious and wanted to know how their hep C infection had occurred. I’d like to know exactly where [I came into contact with hep C] … I don’t know exactly where it happened but yeah, I’d love to know exactly when it did happen (Michael, 38 years) Other participants wanted to know how they got hep C so they could think about the factors that might have contributed, with the idea that something or someone might be to “blame”. I’m curious like but I guess, in the bigger picture, it’s not really that important. Like … I can see how it is important for some people
because like in terms of sort of like ‘laying the blame’ so to speak ... how much of it is actually sort of your, your fault like ... (Naomi, 30 years) How did participants think they got hep C? When participants were asked how they got hep C two types of answers were given. In the first, participants were able to identify a particular event: in the second, participants could not. • Able to identify an event they believed led to hep C infection Seven participants identified the immediate event that they believed resulted in their hep C infection, most of which included the reuse of needles and syringes (including one case of a winged vein infusion set or “butterfly”). Other ways in which participants thought they acquired hep C were as a result of: sharing a spoon; sharing methadone from a bottle that had already been used for injection; a needlestick injury during disposal of a syringe. The situations which lead to the sharing of equipment included intimacy with a sexual partner, with friends as a form of bonding, in prison and as a result of lack of equipment available combined with the experience of “hanging out”. • Not able to identify an actual event that led to hep C infection The majority of participants could not identify the exact time or specific event that resulted in their hep C infection. These participants described ongoing and repeated risk incidents for hep C infection. Risks for hep C infection Common to both groups was the wide range of practices and settings in which the risk of hep C infection was identified. The main risk factor identified by participants was the reuse of injecting equipment. Sharing and reuse of equipment was not confined to needles and syringes but extended to all equipment including spoons, water and butterflies.
Power to challenge social network practice
One area of concern was participants’ lack of knowledge regarding the ability of spoons to transmit hep C. This mode of infection appeared to be under the radar for quite a number of participants.
Being able to challenge other people who were in charge of drug preparation was complex and difficult for some participants who did not feel they had the power in the social situation to do this.
Why people reuse injection equipment
One participant highlighted that challenging someone to change a routine practice was especially difficult when other people were around.
Participants spoke about a range of influences that led to the sharing and reuse of equipment. These influences included the structural issues which were beyond the individual’s control and factors related to the social setting. A number of these influences may have been present during any one injecting episode. Structural influences These are factors about the environment which are beyond the individual’s control and can come about because of the way organisations run, or the way laws are implemented. In this case, the participant was detained in police custody and her methadone treatment was not provided during that time. I received it from an ex-partner of mine … I spent some time in, in lock-up ... I was on a methadone program and I’d had no methadone over that period … she met me as soon as I got out ... she bought me a bottle of methadone with her ... after I’d said, ‘you know, you haven’t been using it yourself or anything?’ she said, ‘No’ ... She had been using it ... So it had blood in it. And that’s how I got it. (Jasmine, 29 years) Social settings Participants identified an association between the social context of drug use and the ability to be careful and watchful with respect to equipment use and cleaning. Participants were not always in charge of their own equipment or drug preparation due to being in someone else’s house or the pooling of resources to purchase drugs. When other people were responsible for drug preparation, participants said they had to trust that person. Trusting someone else was identified as risky.
I said to him like, you know, ‘You shouldn’t be doing that’. And he goes, ‘I’ve always done it like that’. ‘You should always use a filter and everything’. And he’s going, ‘Yeah, but’ … He goes, ‘I do it that way’ … And I don’t think he got quite what I was trying to do. Like, you know, like I was trying to point out this chick was on the, who was waiting for hers, was on the phone. So I couldn’t say too much because I wasn’t sure who she was on the phone to and stuff. So I was trying to like whisper it and stuff (Trina, 39 years) What does this research have to do with me? Our research highlights that the events that result in hep C infection usually involved the reuse or sharing of injecting equipment. However, factors in the environment and the social setting influenced what participants were able to do to minimise their risk of hep C infection. When people are not in charge of drug preparation and use, it makes it difficult to know what is going on at all times during preparation. Trusting someone or not feeling powerful enough to challenge someone who may be doing something risky adds to the complexity of the situation. Our results highlight the importance of being vigilant and aware of what is going on at all times to reduce hep C risk in social settings but also acknowledges the difficulties in doing so in a range of situations. • Abridged from Treloar C, et. al. Providing a better hepatitis C diagnosis: Insights from a qualitative study of recent seroconverters. Australian Family Physician. 2010: 39(8): 589-92
The Hep Review
Professor Bob Batey draws from his experiences as a hepatitis advisor to the Commonwealth Department of Health and talks about rural hepatitis.
ravelling across NSW and to the Northern Territory I am struck by the increasing awareness of both hep C and B as real and pressing health issues in these areas of Australia. That is not to say that the problem has been or soon will be “fixed”. I am in no doubt that many healthcare workers are aware of these conditions and are interested in further education about how to respond to: • the challenge to think about and then screen for these diseases • the diagnosis of hep C or hep B
overall wellbeing is taken account of and understood before the patient is blamed for not attending clinics for screening for example! Managing hepatitis demands an acceptance that if it is not particularly symptomatic, it may not be viewed by many patients as a particularly important issue for them if other health matters, financial crises, homelessness issues are pressing on their attentions more dramatically. With that said, many country cities and other significant centres do need a greater input to allow patients affected by heps B or C to be
• patient fears about the diseases and their own health management.
The Northern Territory has supported hep C and B work through its Public Health Division and it has been a real pleasure to be part of a team in Alice Springs, assessing and managing hep C and working to improve services for those at risk of and affected by hep B. Lloyd Einsedel has played a pivotal role in providing hep B services in remote parts of the Territory and he continues as the key player in this arena. These varying activities demand an understanding of the local communities, their priorities, their understanding of the diseases and people’s deeper personal issues and fears. We make progress slowly in these particular complex aspects. Achieving greater uptake of testing and treatment and then screening in hep C and hep B affected communities demands that: • all clinicians respect the input of other clinicians to the patient’s care package • clinicians involved in every aspect of their patient’s care understand the relative importance of their contribution to the patient’s current management needs • patient’s understanding of the relative importance of the hepatitis infection to their
managed fully in their local environment should they choose this option. Mentoring of local practitioners by visiting specialists will add to capacity and efforts are being made now to increase the availability of such support in the coming year. ASHM1, where I now spend two days a week as Clinical Director of the Viral Hepatitis program, continues to provide support in the form of educational sessions to all parts of the country where need exists. These programs address the needs of nursing, medical and allied health staff – primarily for more information on viral hepatitis – and are evolving as we come to understand the complex nature of providing services in less resourced and more challenging parts of our amazing country. Through this program, ASHM’s aim is to improve the care of those who are at risk and affected by these two viruses. Working in conjunction with the ALA2 it is hoped that over the next year or so many more centres across Australia will receive support as they build services for viral hepatitis affected communities. • Professor Bob Batey, OAM, Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis. 1 2
Australasian Society for HIV Medicine Australian Liver Association
Image by Smabs Sputzer, via www.flickr.com
A recent injection of funding into nursing positions in Queensland, NSW and Victoria has enabled new services to be established in many centres across these states and I have seen service provision in Greater Southern Area Health in NSW expand significantly in a short period of time as a result of this initiative.
feature Knowledge of and attitudes towards hep C in the Egyptian-Australian community in NSW What are the issues for Egyptian-Australians who have hep C? Robyn Horwitz reports on this important issue.
gypt has the highest prevalence of hepatitis C in the world with inadequately sterilised needles used in mass vaccination campaigns contributing to the transmission of the virus. The Egyptian Ministry of Health undertook large control campaigns using intravenous tartar emetic in which more than 35 million injections were given over a 20 year period (1960-1980) for the treatment of schistosomiasis ( a common parasitic disease). Hepatitis C prevalence in Egypt ranges from 6% to more than 40% in some regions and amongst several demographic groups. At the end of 2008, there were an estimated 284,000 people who had been exposed to hepatitis C in Australia with 212,000 thought to have chronic hepatitis C. Between 15-20% of people with hepatitis C remain undiagnosed, many of whom will be from countries of high hepatitis C prevalence. It is estimated that 29,000 people with hepatitis C antibodies have migrated to Australia from high prevalence countries such as Egypt. Given the high hepatitis C prevalence in their home country, Egyptian-Australians represent a high-risk population for hepatitis C infection. A recent exploratory study focused on the knowledge and awareness of hepatitis C, and attitudes towards people living with hepatitis C, in the Australian-Egyptian community. Surveys were completed by 121 participants recruited in inner and suburban Sydney. Despite Egypt’s status as the country with the highest prevalence of hepatitis C infection in the world, participants had low knowledge of transmission and treatment and low testing rates even though half of the sample knew someone with hepatitis C. A favourable attitude towards people living with hepatitis C, having heard about hepatitis C and having had a blood test for hepatitis C was found to independently predict better hepatitis C knowledge. Positive attitudes towards people with hepatitis C were found to be positively correlated with participants knowing someone with hepatitis C but negatively correlated with the amount of time spent in
Australia. Indeed, the research suggests that Australian-Egyptians may have adopted the negative views of hepatitis C widely held in the Australian community, which are based on the association of hepatitis C with the illegal and highly stigmatised practice of injecting drug use. The high prevalence of hepatitis C in Egypt combined with poor knowledge of hepatitis C transmission and low rates of hepatitis C testing, has far-reaching implications for the AustralianEgyptian community. Understanding how hepatitis C is transmitted is equally important for people who are already hepatitis C positive so they can reduce the chance of transmitting hepatitis C to another person. The high rate of people in this study who spoke only Arabic at home, despite the majority of the sample having lived in Australia for more than 10 years, points to the need for health promotion materials to be available in their preferred language, in this case Arabic. These materials need to be developed in consultation with the communities themselves, in order to ensure that they are relevant and culturally appropriate. While this research is exploratory, it highlights the need for accurate and appropriate information for the Egyptian-born population, describing modes of transmission, symptoms of hepatitis C and treatment options. With increasing cultural diversity among migrants to Australia, health services need to cater for cross-cultural needs and provide care that is culturally sensitive. This study has identified the need for broader research to survey the level of hepatitis C knowledge and attitudes towards people with hepatitis C in migrant communities. • Horwitz R¹, Brener L¹, Treloar C¹, Sabri W², Moreton R², Sedrak A² National Centre in HIV Social Research, The University of New South Wales.
Multicultural HIV/AIDS and Hepatitis C Service. NSW Health.
The Hep Review
St George liver clinic: a social expan A funding grant has enabled St George to initiate an expansion of their cultural service delivery. Christine Janssen reports on this very welcome development.
ogether, hep B and hep C represent a major threat to global health. They are both “silent” viruses and, because many people feel no symptoms, they could be infected for years without knowing it. Left untreated, heps B and C can lead to cirrhosis and liver cancer, increasing the risk of life-threatening complications. In some cases, a diagnosis is made too late and the only option is a liver transplant. The Liver Clinic at St George Hospital has recently been successful in applying for a grant through the Multicultural Health Service. The grant will be used to fund a project with the following aims: • improve access to Liver Clinic for CALD (Culturally and linguistically diverse) patients • increase awareness of treatment options for blood-borne viruses (BBVs) • promote screening for liver cancer among CALD patients infected with viral hepatitis • improve health in CALD communities • identify and address myths and misconceptions relevant to the CALD communities being targeted • improve GP education, targeting GPs currently providing services to the CALD communities.
If a person thinks they have been at risk, it is important that they are tested as soon as possible and, if diagnosed, given the opportunity to consider treatment options and self-management strategies. In order to increase the number of CALD patients accessing testing and treatment, we will review barriers to accessing treatment among the CALD community in the St George and Sutherland areas and, in partnership with appropriate service organisations, information sessions will be organised and language-appropriate information on heps B and C will be provided. Participants who identify themselves as being at risk will be encouraged to seek testing and, if appropriate, treatment and ongoing support through the St George Liver Clinic, the only multidisciplinary clinic for the St George and Sutherland Shires. There is a high incidence of viral hepatitis in certain migrant populations in Australia which results in disproportionately higher morbidity and mortality of hep B and hep C related complications in these populations. In Australia, there are more than 200,000 people with hep C. The high prevalence of hep C in regions such as South East Asia, Eastern Europe and the Middle East translates to approximately 40% of recipients of liver transplants due to hep C complications being migrants.
Images (left to right) by Ibontxo, madmonk, David Salafia, Kam, liber, Claus Rebler, all via www.flickr.com
nsion of services There is ample data indicating that treatments for hep B and hep C can halt the progression of liver disease and reduce the risk of liver cancer. In those patients with significant liver scarring, strict screening programs (biannual blood test and ultrasound) have been shown to be effective in detecting cancers at an early stage, allowing early intervention and impacting favourably on survival for these patients. Therefore, by improving knowledge among migrants of these issues, we have the chance to improve people’s overall health and quality of life. Recently, the St George Migrant Resource Centre conducted information sessions for the Egyptian and Lebanese communities; there was a high level of interest in acquiring accurate and professionally delivered information, justifying the need for ongoing contact and support with the members of these communities. The Chinese Network Services have also identified the need for accurate information, particularly to dispel some of the myths and misconceptions regarding transmission and treatment of heps B and C. The primary target of our project will be men and women over the age of 40 who were born overseas and are members of the Chinese (Mandarin and Cantonese), Egyptian and Lebanese communities. People will be recruited via the project’s partnership organisations and information will be provided in relevant languages. The following organisations have agreed to be partners in the project:
• St George Migrant Resource Centre • St George Chinese Services Network (CSN) • St George Lebanese Joint Committee Inc. • St George Division of General Practice Inc. Groups will be revisited as requested/required during the project duration. Questionnaires will be distributed to all groups at an initial meeting and at follow-ups which will occur within six months. The aim will be to evaluate improvement in knowledge about viral hepatitis, and to receive feedback and suggestions that we can act upon to improve delivery of our service. Through the clinic, we will monitor the increase in treatment uptake among the targeted CALD communities. We will also monitor compliance with clinic visits, adherence to treatment and surveillance for liver cancer. The ultimate objective of the project is to establish sustainable programs that can be implemented by any community organisation in any health area and to engender a sense of community participation in the promotion of health and knowledge of health issues. • For further information please contact Christine Janssen, Social Worker, at the St George Liver Clinic: christine.janssen@ sesiahs.health.nsw.gov.au
The Hep Review
All you need 2 do is
Inmate health and how it is managed
oes Corrective Services NSW know all about your health issues, what you are taking, who you are seeing – which doctor, which nurse? The short answer is no. The following article provides some insight into how your health is looked after. Reception and intake All those convicted who enter a correctional centre have a Reception Screening Assessment where they are asked a series of questions about their health history and risks. They then may be referred for further services such as GP, drug and alcohol, mental health or public health – where BBV/STI testing may be offered. Depending on findings, a Comprehensive Health Assessment might be scheduled. This aims to identify people with current or emerging health problems and enables a Management Plan to be developed. The patient will then be scheduled for a regular review of the plan; the frequency depends on findings – if there are no underlying health issues or identified risks, the person will be scheduled for an Annual Health Assessment with a Health Assessment and Review Plan after five years. Of course, if there is evidence of a particular health issue or concern he/she will be assessed more frequently. At any time during incarceration, a patient can self-refer to the Health Centre for BBV/STI screening or he/she can request to see the GP (after primary health nurse triage) or the mental health and drug and alcohol nurses. Treatments for hep C and B are available. Above image provided for All you need 2 do is ask by Long Bay MSPC inmate.
Certain sites run an Aboriginal Chronic Care Program which provides screening for heart disease and renal disease, and the opportunity for health promotion education. Lithgow Correctional Centre is a prime example of Aboriginal healthcare. All custodial facilities have a Health Centre and the size of the health centre and hours of operation depend on the needs of the centre. Patients with chronic disease, e.g. chronic hepatitis, will be offered monitoring every six months. If their condition progresses to cirrhosis or liver failure, they will be monitored more frequently. Patients who are too unwell to remain at their gaol of classification will be transferred to the Long Bay Hospital. Emergencies are generally dealt with at the local hospitals. All centres have access to dental services. Frequency is dependent on the size and needs of the centre. Dental appointments and triage is now done by the ISOH (Information System for Oral Health) hotline. It is important to stress that, if prisoners are in any way concerned about their health, they should attend the Health Centre and ask to see the nurses who can then triage to the appropriate services. The only time Corrective Services would be told about an inmate’s health would be for the patient’s safety. For example, BBV/STI status would never be passed on but, if the patient had unstable diabetes or uncontrolled epilepsy, then this might be mentioned on the Corrective Services / Justice Health health problem notification form. This alerts staff on what to be aware of so that measures can be put in place to safeguard against emergencies.
Don’t cuff yourself
Inmate health is mainly looked after by Primary Health, whose functions include: • risk assessment and risk management • emergency response • assessment, referral and short term treatment for chronic conditions • prevention, early detection and intervention • ongoing care for chronic conditions.
• engaging consumers through collaboration to encourage and facilitate meaningful discussion to ensure positive consumer outcomes • seeking quality improvement in the provision of health services. Privacy and monitoring your health
Primary Health also provides the following services, special programs and support functions: • specific programs for the frail and aged • General Practitioner services • oral health services • specific programs for Aboriginal people with chronic conditions • pharmacy and radiology services • medical appointments through the Medical Appointments Unit • physiotherapy service at Long Bay Correctional Complex. Primary Health provides healthcare services in rural, remote and metropolitan correctional centres. These services are provided by a range of medical, nursing and allied health professionals. Inmate Development Committees in centres usually have a role in providing feedback on health services. IDC delegates and inmate delegates on the group are able to raise issues that affect inmate health and seek to have them remedied to improve health and services.
Justice Health is bound by law to keep your information confidential. In some cases, the law also allows or requires your health information to be disclosed to other third parties, for example, for compulsory reporting purposes such as to report notifiable diseases, or to comply with a court order if your personal information is required as evidence in court. They seek your consent before using your information for some other purposes, for example if it is to be used in research.
Your health information and Corrective Services NSW Your medical file is confidential and cannot be viewed by a Corrective Services employee, officer or other person. Justice Health is obliged to provide some information to Corrective Services NSW to make sure that “at risk” inmates are safe. In general your health is confidential and Justice Health is the body which monitors it. Remember if you have any questions write in. I will answer your questions and find answers if I don’t know them.
Inmate health is also monitored through the Consumer and Community Group. The Consumer and Community Group is a sub-committee of the Justice Health Quality Council and is responsible for: • the provision of information to consumers about health services and issues • informing consumers by promoting awareness and education on issues that affect healthcare provision • consulting and empowering consumers through seeking broad-based feedback, as well as providing an effective forum for consumer participation
• Robert Barco The Hep Review Hepatitis NSW (see address, page 3) Also see page 46.
The Hep Review
Backpacking for hepatitis Our new project sees volunteers adopting a local outlet and keeping them supplied with hepatitis information resources.
ave you ever visited a local treatment clinic, doctor, library or chemist and thought, “This would be a good place to have hepatitis info resources – what a shame there are none.”
Hepatitis NSW’s Hep C Backpacker project kicked off just a couple of months ago and has already shown good results. We have at least three treatment centres involved and have also trialled the project at a local chemist and bookshop. The project involves local volunteers adopting a clinic, GP surgery, library, bookshop, chemist or other outlet and visiting every couple of weeks to keep the stand stocked. If the outlet is directly involved in hep C treatment, our perspex display stand includes nine treatment related resources, including The Hep Review magazine. For other outlets, we can provide smaller stands that display supplies of booklets, brochures, the Hep Review magazine or our bookmarks (see page 44). For the outlets, we supply the information stands free of charge. For volunteers, we supply either a backpack or hand trolley. The Backpacker volunteer visits the outlet every couple of weeks to stock up resources on an as-needs basis. The volunteer contacts Hepatitis NSW when their backback or hand trolley is running low and we post supplies to them. This means that staff at the outlets don’t have to worry at all about the resources display. The project provides individual volunteers with an opportunity to get out and help address the hep C epidemic; it provides outlets with an ongoing stable supply of consistent and up-to-date resources. It’s a win-win situation. • If you’re interested in being involved – either as an outlet or a volunteer – please call Paul on 9332 1853 or via email@example.com
ittle Feat co-founder Richie Hayward has died after a long battle with liver disease. A much loved and respected musician, he was 64.
Hayward played drums in the seminal band throughout its entire career. In the late 1960s, he played with original Little Feat front man Lowell George in the band’s precursor The Factory. George and Hayward co-founded Little Feat in 1969 along with Bill Payne and Roy Estrada. They established a distinctive style of improvisational southern rock that mixed elements of blues, rock, boogie and funk.
Image by HipSmart, via www.flickr.com
Little Feat went on hiatus in 1978 and officially parted ways a year later after George died of an accidental overdose. Hayward helped reform the band in 1987 and continued to play with the group until last year when health concerns prevented him touring. Hayward lived in British Columbia until his death.
Hayward was also an accomplished sideman and played on recordings by such diverse artists as Eric Clapton, Warren Zevon, Travis Tritt, Robert Palmer, Tom Waits, Taj Mahal, Barbra Streisand, John Cale, Buddy Guy, Arlo Guthrie, Carly Simon, Bob Seger and many others. Hayward and Little Feat also collaborated with a new generation of jambands in the ’90s and ’00s, including Jimmy Herring, Bela Fleck, String Cheese Incident, Leftover Salmon and Warren Haynes. The band’s association with Phil Lesh and Friends and cover of Phish’s “Sample in a Jar” also brought an element of improvisation back into the group’s live sound. In addition, he played in the jam-band all-star band Justice League with Herring, T. Lavitz and Adam Nitty. • Abridged from http://tinyurl.com/24ofxea (13 August 2010)
The Hep Review
John’s story: still waiting to get
used to think that I was a rarity – in fact internet research indicated that I didn’t exist, or only as a unique specimen – and then I read the article in The Hep Review Edition 70 about Max Hopwood’s research into people with ongoing problems after hep treatment. You see, I keep reading all these “happy ever after” stories and wonder why I am so different and had such a different outcome despite medical tests saying that I am “cured”. I was first diagnosed in 2001 as a result of a needlestick injury. I went to the hospital to be checked for HIV and found out that I’d won “second prize”. The odds of this outcome are microscopic so it’s a pity that I don’t have the same “winning” ways with Lotto! They estimated my life span as 10-15 years. I was then in my mid-forties. As I didn’t have a GP (no health problems since childhood but boy have I made up for it lately!), they offered to give me twice-yearly tests to track the virus. I made some alterations to my lifestyle (cut back alcohol, started to take St Mary’s Thistle, increased the exercise) and continued popping into the hospital every six months. By 2005 they were estimating my life span at 20 more years, but they freely admitted they weren’t experts. I was experiencing pain and stress during this time, but it all seemed to equate to symptoms for the virus so I just shrugged and learned to live with it. In late 2006 one of the doctors asked whether I’d heard of the government’s expanded policies regarding treatment and did I want to be referred to a more cutting-edge hospital. Of course I said “yes”. The new hospital did the usual blood and ultrasound tests, then rang me to urgently come in early in 2007. Fearing the worst, I went in to be told that I had an 80% chance of being cured within six months and then life could be back to normal. An offer too good to be true? At the time I was working three part-time jobs totalling six to seven days per week. It became obvious during my discussions regarding the treatment program that my lifestyle would be impossible to continue in the short-term, so within a week or so I had cut back to one job, three days per week, and was on the treatment program. Oh, how I couldn’t wait to get back to a “normal” lifestyle.
Whilst much of the literature seemed to suggest that you injected during the day it became obvious from my discussions and research that the ideal time was to inject just before bedtime and sleep through the worst of the pain. It also became obvious that I should inject on Sundays, spend three days recovering, and work Thursday, Friday and Saturday. All too easy! I do wonder now whether it was that decision that was to later come back to haunt me or not. First problem was that I didn’t get to sleep on that Sunday night. Nor for that matter on Monday or Tuesday. So on the Wednesday I rang the hospital in a panic (I was due to work the next day) and they prescribed some sleeping pills. That prescription needed to be repeated for the rest of the treatment program and, in fact, the following three years (with variations)! In some ways the treatment program (peg interferon and ribavirin) nearly killed me. Maybe I wasn’t as strong mentally or physically as I thought? Some days it would take an hour to get through the shower. I “celebrated” my 50th birthday with a 10 minute walk (actually took me 30 minutes but it would normally have only taken 10) to a local cafe and a celebratory coffee. At the same time I had the mental discipline of making sure that I got up on Thursday for work and I never missed a day during those six months. I may not have been as mentally alert as I once was but I got there and stayed awake and functioned for the nine hour shifts. Boy was I exhausted! I became anaemic but late enough in the treatment for the doctor to persevere with the original dose of ribavirin. I was pronounced “cured” about half way through but we continued on until the end of the 24 week program. At this stage the clinic basically threw me out and suggested that I find a GP if I had any other problems. There is nothing like “follow-up” is there? (I did have to go back for some confirmatory blood tests some months later). My first GP just continued the same mixture of sleeping pills that the hospital had given me. I didn’t think that was right (I had my fill of drugs and wanted my “normal” life back) so I soon changed GPs. The next one experimented with lots of herbal cures (I liked the idea of that better than drugs, just a pity about the results) along with one of the drugs, even at one stage trying to quadruple suggested doses to see if that made a difference.
t back to a normal lifestyle Not much difference as it turned out; in fact for the three and a half years since I first commenced treatment I have been lucky to get much more than four hours sleep, and that is only with the help of the various prescribed drugs, and even with the drugs on some nights I still get zero sleep. By this stage I was starting to believe that at the same time as “frying” my liver, one of the components of the combo hep treatment had “fried” my brain. Problem is that numerous blood tests have revealed no abnormality. Or maybe it is just three and a half years of sleep deprivation that now mean that I’ve gone from chronic hepatitis to chronic insomnia plus chronic depression plus chronic “brain fade” and fatigue. I changed GPs again about 18 months ago. More herbal cures later along with about six different types of sleeping pills, plus side visits to an iridologist, an acupuncturist, and several herbalists, and we are back on the original sleeping pills that the hospital prescribed. In the meantime I can no longer work and 30 years worth of accumulated savings have gone down the gurgler. Various doctors and pharmacists have probably paid for overseas trips at my expense, but I am no better off. I did call, for the first time ever, Hepatitis NSW last year, but there wasn’t much they could tell me and referred me back to my GP. I would have appreciated knowing about possible long-term side effects at the time that I agreed to go into the treatment program. It may not have changed my decision as it would seem that the odds are fairly small, but it would have changed my current “resentment factor” if I had gone into it with completely open eyes. The treatment program was sold to me as a short-term inconvenience in exchange for a long-term cure. It is only now, after the event, that I find out that perhaps the “cure” is worse than no cure. I may no longer have hepatitis but I have all the symptoms that used to accompany liver problems, so where have I gained? I used to dine out every night and have social coffees most days. Now I do neither, partly due to budgetary constraints, mostly because I cannot get up either the energy or the enthusiasm. I used to read a lot, now I can’t concentrate on a book long enough to manage a chapter at a time let alone a whole novel. I used to love movies but now I cannot take a screen for more than half an hour or so at a time. I used to love attending sports, now I cannot stand crowds. I used to regularly write six page emails to a circle of
friends and relatives and now most get nothing whilst my parents have to make do with two lines telling them I’m still alive. I used to weigh 75 kg, now I weigh 60. My sex life is now nonexistent. Sometimes I lose track of conversations and forget who I’m even talking to. As a result I often shun friends so that I don’t make a faux pas. It’s more like living like an 83 year old than as a 53 year old! In fact my 89 year old father has more of his faculties left than I have. Coincidentally, or maybe owing to much of the above, my eyes have started playing up so it was nearly $500 worth of glasses required a few months ago (that meant less rent money). They were multifocals and I couldn’t adapt, so it was off to another optician and another two pairs of glasses and another $400 expense. (I think I’ll get $200 back from my health fund which will more than likely be used to fund their next few months of premiums so it’s not exactly spending money!) Overall, I may have been “cured” but my life wasn’t improved as a result; it didn’t even go back to “normal”. I am glad for the people who have happy endings as a result of the treatment as I’d hate for too many people to be going through my pain and misery. On the other hand, I do think that intending patients should be aware of the possibilities (however slight) of continuing post-treatment difficulties. Let patients make an educated and informed decision, not just a “rosy-tinted spectacles” decision. As I said earlier, even if I had been warned of the possibility I may have still gone ahead; at least I’d have been taking a calculated gamble with the rest of my life, whereas I initially thought that I was only gambling with six months of my life. I don’t blame the clinic for the result – their speciality is fixing the liver and this they seem to do well – it’s just that unfortunately that liver has to live in a body which can also be adversely affected. I do hope that research such as Max Hopwood’s finds whether there is a link between hep treatment and ongoing problems, and maybe one day we’ll find a solution for that as well.
John, NSW NB: Most people who complete hep C combo treatment do not experience such problems. We can offer suggestions that might help those people who have a harder time after treatment. Phone the Hepatitis Helpline for more information.
The Hep Review
HELLO HEPATITIS HELPLINE I’m calling from prison, and I’ve had hep C for about five years. I’m in for a while, and I’d like to give treatment a go while I’m here. How do you get treatment from Justice Health? Yes, you can have treatment while you’re inside. For lots of people, prison can be a good place to try treatment; lots of things are pretty stable inside, and even though there are pressures you don’t have on the outside, it can be a good time to fix some health issues that you don’t have time for in the community. The first step is to make an appointment with the nurse. Gaol nurses see a lot of people with hep C, and they’re experienced in talking about it. They can tell you what the treatment involves and do some testing. It’ll be important to find out things like how your liver’s going at the moment, what genotype (strain) of hep C you have and if you have any other health issues. Those tests might also influence your decision, because they’ll tell you whether you’d need treatment for six months or 12 months and give you an idea of how likely you are to be cured. It’s also worth thinking about how long you have left on your sentence. If you’ll be released soon, you might need to arrange treatment follow up on the outside – this can be hard what with all the other pressures of being released. The nurse can tell you where to go for treatment in the community. The nurse will also be able to send any results of tests you may have had in prison to the doctor or clinic you will be visiting on the outside. Having those results can speed up the process. If you’re suitable for treatment and keen to try it, you might be able to access it in your gaol. Not every prison has treatment services though, so you might be moved to start on the medication. Some people are moved to Long Bay to start, but once things are stable they are moved back to their prison of classification. Justice Health is in the process of introducing a model of care which will mean that you might not have to travel to Long Bay. This will depend on the centre you are in so it is worth asking the nurses about this.
One difference is that you will have to attend the clinic to get your injections. The nurses will show you how to do it, and in most centres you will be able to do this yourself. Again, depending on the centre, you may get one month’s supply of ribavirin tablets to take away, or you may have to collect daily. You’ll need to have regular blood tests to make sure that things are going okay for you and you will have some tests at different times to see whether the treatment is working. It will be important to try and stay as healthy as you can on treatment, which means exercise and eating well. It will be important also to tell the nurses if you are not travelling too well, feeling really down or just not coping. Sometimes it can be hard to see a nurse as soon as you’d like; if you’ve tried all the usual channels and haven’t had any luck, give us a call and we can try to find out more info. If you use inside it can be hard to avoid being reexposed to hep C in prison. As always, try not to share anything that could come into contact with blood, or try to clean it with Fincol before you use it. That includes anything used to inject drugs and tattoo and piercing equipment. It’s also a good idea not to share toothbrushes and razor blades, to avoid fights where you can, and to only have your hair cut by someone with the right qualifications (a visiting hairdresser or an inmate with barber training). Remember that we’re available to talk to you while you’re on the treatment through the Prisons Hepatitis Helpline. You can ring us to talk about how you’re going and we can help check up on appointments too. We also have plenty of printed information about hep C and treatment that we can send you. • To call the Prisons Hepatitis Helpline on the gaol phone, enter your MIN and your PIN, press 2 for the common calls list and then press 3.
Also see page 40.
Once you’re on the treatment, things aren’t too different from someone being treated on the outside.
‘Hello Hepatitis Helpline’ is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity. 46 www.hep.org.au
FERRAL. INFO. SUPPORT. RE L TIA EN ID CONF
membership matters You are vital to us — we are here for you AUDREY LAMB COMMUNITY FORUM AND ANNUAL GENERAL MEETING 2010 three years in advance and you may use direct deposit facilities as well as the usual cheque, money order, credit card and cash payments.
• Our sincere thanks go to outgoing board President, Dr Grenville Rose, who stepped down following five years in this key leadership position. We are pleased Gren remains on our board of governance. • Congratulations to incoming President, Ms Christina Thomas, who joined our board in 2006 and has served both as Secretary and Vice President. • Thanks and best wishes go to board Treasurer, Sallie Cairnduff, and board member, Panos Couros, who stepped down at our 11 Nov AGM. • We have changed our constitution in line with the new Associations Incorporation Act 2009, and following our usual annual review which ensures our governing document suits the smooth administration of our association. We await confirmation of these changes from NSW Fair Trading. • What’s new? Zero fee memberships are now current for a three year period without the need to formally renew. • Other memberships may be renewed for up to
• Another amendment to the constitution provides for our membership year to coincide with the financial year for standardisation of bookkeeping processes. This means that our membership year will commence on 1 July yearly, the beginning of the financial year. Members in the current membership year will have an extra four months of membership value, as their memberships will be automatically extended from 1 March - 30 June next year, 2011. If you join now or renew your membership, you too, will have this extra benefit. • Guest of honour at our 4th Audrey Lamb Community Forum was our founding Patron, Professor Geoff Farrell, who provided a detailed and compassionate overview of what people with hepatitis C can face when they undergo current and forthcoming treatments. • Financial members will receive a summary of Geoff’s presentation along with their copies of Member News.
A historical perspective – 1995 Headlines from 15 years ago...
• The inside story – law & NSW prisons
• National epidemic – National response
• Newcastle herbal treatment trial
• Prisons – what do they mean to you?
• Liver biopsy – what is it?
• Minister for Health reaffirms commitment
• Hepatitis C within the prison walls
• Contaminated razor blades – a possible source of HCV infection
• Greetings from Tamworth
• Hep C in prison – a D&A worker’s perspective
• RPAH offers new hepatitis C tests
• Unique new interferon trial
• Spread of bloodborne viruses among Australian prison entrants
• Statement from Minister for Corrective Services
• HCV-friendly healthcare workers
• Jail Ink – a prison tattoo project
• AHMAC Prevention Approach
• Prisons and HCV – the community policy
• Hunter support groups
• New hepatitis clinic at Long Bay Gaol
If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy.
• Hepatitis C at epidemic proportions • Specialists denounce HCV strategy
• Taken from The Hep C Review, Edition 13, “December” 1995 (Jan 1996).
The Hep Review
hep C bookmarks O
ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990).
• Hepatitis NSW
Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
or call the
Hep C Helpline (see over)
Hepatitis C is hard to catch.
Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. People with hep C come from all backgroun ds. accurately ass You can’t ume anythin about them. g
It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid forks. and bloodknives tosame blood contac t wit h other people, you are not at risk . It is transmitted when So if infected blood from one hep you find out someone C, sup the port them and has person gets into don dis ’t crim inate agains bloodstream of someone t them. else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)
Maps 349 Chalmers St, surry hills - Google Address Chalmers St Surry Hills NSW 2010
â€“ your one-stop shop for hep info
Sydney Central support group is NSW are Support groups here at Hepatit going strong! el 1, 349 The groups are held at our office: Lev meeting, Crown St, Surry Hills. Our upcoming Feb (no running from 6-8pm, will be on 15 groups in Dec or Jan). together They are a great opportunity to get h catc with others affected by hep C and interesting guest speakers. s Helpline â€˘ For more details, call the Hepatiti on 1800 803 990.
to sp anise a time
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The Hep Review
research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need. Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. This helps develop consensus opinion on particular research topics and broadens our overall knowledge. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). NB: in some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.
Vitamin E helps those with fatty liver disease
Quality of life in patients with various liver diseases
USA – In a study published in the New England Journal of Medicine, research found that daily vitamin E improved the livers of patients who have a type of liver disease known as nonalcoholic steatohepatitis (NASH). The study results are welcome findings because there are currently no approved treatments for the disease, says a Saint Louis University researcher on the project.
Germany – Little is known when comparing and contrasting the quality of life (QoL) in patients with hep C, compared to patients with other liver diseases. We performed two independent prospective cross-sectional studies including 511 and 284 patients with different forms of liver diseases. The SF-36 [QoL measurement tool] was used in both studies. Fatigue Impact Score, WHO-BREF and Hospital Anxiety and Depression Scale (HADS) were used in either study only.
Increasingly common, NASH is characterized by excessive fat that causes inflammation and damage in the liver; NASH affects 3-4% of all adults in the US. Linked to weight gain and obesity, NASH can lead to cirrhosis, liver cancer and death. “Fatty liver disease is a growing problem in the US, and we currently have no approved medication to offer patients,” said Dr Brent Tetri, a hepatologist at Saint Louis University Liver Center and study researcher. “With this study, we’re pleased to find that vitamin E should help some of our patients.” • Pioglitazone, Vitamin E, or Placebo for Nonalcoholic Steatohepatitis. Sanyal AJ, et.al. NEJM 2010. 362:1675-1685 Abridged from http://tinyurl.com/29m7wk9 (6 May 2010).
In both studies, HCV-positive patients scored worse in the mental aspects of health-related QoL compared to other liver diseases, except for HBV in one study. Surprisingly, in both studies, quality of life was also significantly impaired in patients with viral clearance after interferon therapy but not after spontaneous clearance. Furthermore, patients with primary biliary cirrhosis showed significantly better mental health but significantly worse physical well-being. Liver diseases differ in their form of impaired QoL. In HCV, this impairment might not always return to normal after treatment-induced viral clearance. This may suggest that HCV either may not be involved in QoL impairment or may induce a process which persists after viral clearance in some patients. • Quality of life in patients with various liver diseases. Tillmann HL, et. al. J Viral Hepat. 2010 E-print Abridged from http://tinyurl.com/28xshgu (8 March 2010).
research updates Experiences of drug use and ageing
Factors associated with specialist assessment and treatment for hep C
UK – This paper is a report of an exploration of older people’s experiences of substance use in the context of ageing, and its impact on health, quality of life, relationships and service use. Use of illicit drugs by older people is a neglected policy, research and service provision and is generally perceived as a lifestyle of younger populations. A convenience sample of 11 people aged 49-61 years (mean 57 years) in contact with voluntary sector drug treatment services participated in qualitative semi-structured tape-recorded interviews and thematic content analysis was performed. The data were collected in 2008. Drug use can have negative impacts on health status, quality of life, family relationships and social networks that accrue with age. Participants were identified as early or later onset users of drugs due to the impact of life events and relationships. A range of substances had been used currently and throughout their lives, with no single gateway drug identified as a prelude to personal drug careers. Life review and reflection were common, in keeping with ageing populations, along with regret of ever having started to use drugs. Living alone and their accommodation made them more susceptible to social isolation, and they reported experiences of death and dying of their contemporaries and family members earlier than usual in the life course. Older people who continue to use drugs and require the support of services for treatment and care are an important emerging population and their specific needs should recognised. • Experiences of drug use and ageing: health, quality of life, relationship and service implications. Roe B, et. al. Journal of Advanced Nursing 2010. 66(9), 1968-1979
Australia – Assessment and treatment for hep C in the community remains low. Researchers at the National Centre in HIV Epidemiology and Clinical Research evaluated factors associated with HCV specialist assessment and treatment in a cross-sectional study to evaluate treatment considerations in a sample of 634 participants with self-reported hep C infection in New South Wales, Australia. Participants having received hep C specialist assessment (n=294,46%) were more likely to have been older, have greater social support, have hep C-related/attributed symptoms, a diagnosis of cirrhosis, have asked for treatment information, have greater hep C knowledge, have been told by a doctor to go onto treatment, and be less likely to be receiving opiate substitution therapy, or never have seen a general practitioner. Participants having received hep C treatment were more likely to have greater fibrosis, greater hep C knowledge, know someone who has died from hep C, been told by a doctor to go onto treatment, and were less likely to have been female, or to have recently injected and be receiving opiate substitution therapy. These data identify modifiable patient, provider and systems level barriers associated with hep C assessment and treatment in the community which could be addressed by targeted interventions. • Factors associated with specialist assessment and treatment for hepatitis C virus infection in New South Wales, Australia. Jason Grebely, et.al. National Centre in HIV Epidemiology and Clinical Research. Pre-publication at time of print.
Downloadable via http://tinyurl. com/32x5pt5
The Hep Review
research updates Babool bark holds hope for a liver cancer cure
Liver cancer on the rise in obese people
India – Researchers claim to have developed a drug that could be a potential cure for liver cancer from the extract of the bark of Acacia nilotica tree, commonly known as babool.
Australia – Accumulating evidence that liver cancer may be related to the early stages of non-alcoholic fatty liver disease (NAFLD) is one more reason to tackle the burgeoning epidemic of obesity in people, according to an Australian expert.
The study which has continued for almost four years in the Mycology and Plant Pathology Department of the Banaras Hindu University is supervised by Professor H B Singh. The findings of the study had been published last year in the premier online US journal, Chemico-Biological Interactions. Dr Brahma Nand Singh, a member of the research team, has now been invited to work with renowned cancer research scientist Professor Shi Wen Jiang at the Department of Bio-medicine (Savannah), USA. He will now embark on research on the role of babool in cancer therapy by reactivating tumour suppressor genes at various stage of the disease. Singh said the tree has strong chemo-preventive potential in the form of six compounds present in the methanolic extract of the bark of Acacia nilotica. These compounds play an essential role in prevention and therapy of cancer, cardiovascular diseases, neuro-degenerative diseases and inflammation by inducing antioxidant defence system. The researchers found that the Indian babool has more cancer preventive phytomolecules (antioxidant polyphenolic compounds) than the Australian babool and that it stabilises and increases all the components of the defence gene pools. The babool extract abolishes the activities of liver injury and tumour markers by decreasing the damage to bio-molecules such as DNA, RNA, lipids and proteins that are essential for life. H B Singh said, “It’s a path-breaking finding among cancer studies. For the first time, our research has established a link between babool phytomolecules and cancer prevention.” • Abridged from http://tinyurl.com/2ed69h8 (6 July 2010)
Professor Jacob George, director of the Storr Liver Unit at the Westmead Millennium Institute in Sydney, said it was estimated that in future NAFLD would be the cause of 30% of hepatocellular carcinoma (HCC) rather than less than 5% as it is now. “People now have metabolic syndrome even in youth or teenage [years] and so end-stage NAFLD-related liver disease is being seen in people in their 40s, which is a worry,” Professor George said. Professor George was commenting on an article in Gut, which said that the rapidly increasing prevalence of obesity and diabetes in affluent societies, and their significance in the pathophysiology of NAFLD, would result in a rising incidence of NAFLD and its complications – including liver cancer – in the mid-term future. The authors said it meant dietary recommendations or tight diabetic control should not only be for patients with “pure” NAFLD but also for those with other liver disease and metabolic syndrome. They said that based on the known association of NAFLD with insulin resistance and metabolic syndrome, one study had looked at patients with HCC and NAFLD and found about two-thirds of the patients were obese and/or diabetic and a remarkable 25% had no cirrhosis. Professor John Olynyk, professor of hepatology at the University of Western Australia, said modifiable risk factors should be addressed, including weight reduction and exercise for NAFLD and NASH, treatment of viral hepatitis, reduction of alcohol, improvement in nutrition and treatment of hereditary haemochromatosis. • Abridged from http://tinyurl.com/2amvdda (27 Sept 2010)
My Choice / My Rights
National Resource Manual
NSP 'Facts & Myths' (max 5)
Treat Yourself Right
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What is Hep C?
Women & Hep C
What You Need To Know booklet
Youth & Health Worker Support Kit (max 5)
Hep C & Us Mob
Hep Review magazines
Moving On After Treatment
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Hep B "Bear" flipchart (for healthcare workers)
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HCV Primary Care Healthy Body Art
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What you need to know Youth & Health Worker Support Kit
What is Hep C?
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Treat Yourself Right
NSP 'Facts & Myths'
National Resource Manual
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64 pages of hep news, features, stories & opinions
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Training manual on youth body art and drug use
84 page booklet providing detailed info on hep C
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interferon-based treatment Interferon-based treatment
partner). Female partners of men undergoing treatment must not be pregnant.
Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily.
Age: People must be aged 18 years or older.
Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly anti-HCV positive and HCV RNA positive). Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each
Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information). Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests must be performed at the same laboratory using the same
type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment. Note that some people with genotype 2 or 3 may still require
CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peg interferon mono-therapy if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
complementary medicine biopsy to determine whether they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring. See “Monitoring Points”, page 54. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access interferonbased therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline (see page 56). NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre. In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).
Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see Edition 24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see Edition 45, page 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side effects? • Are they a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?
The Hep Review
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 56) for more information and the contact details of relevant professional associations. • Hepatitis NSW. To access any of the above mentioned articles, please phone the Hepatitis Helpline.
support and information services Hepatitis Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers). Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.
Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes some information resources in various languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au
Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW).
support and information services Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org
refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466.
Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning 10.30â€“11 am, (Eastern Standard Time). Go to 3CRâ€™s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390. Gosford: 6pm-7.30pm on the last Thursday of each month at the Education Centre, Gosford Hospital Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast hep C support group A peer support group for people living with or receiving treatment for hep C. Meets every 3rd Monday, 5-7pm at the Coffs Harbour Community Centre. For info, phone Janet Urquhart, Social Worker, Coffs Harbour Health Campus on 6656 7846.
Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0418 207 939. Sydney Central support group A chance for people living with hep C to meet others and get some support. We meet on the 3rd Tuesday of each month (no groups in Dec or Jan), from 6-8pm at Hepatitis NSW, Level 1, 349 Crown Street (corner of Crown and Albion Streets), Surry Hills. Food and drink provided. For info, phone the Hepatitis Helpline on 9332 1599. Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C. It offers free and confidential services to affected people and their families and carers. For info, phone the Traids worker on 9515 5030 or 1800 108 098.
Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light The Hep Review
noticeboard / promotions The most precious gift
We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time.
Inner city Sydney support groups: 15 Feb, Level 1, 349 Crown St, Surry Hills (no groups in Dec or Jan). For more info, please phone 9332 1599. Conferences: The 2011 Haemophilia Conference will be held on 20-22 Oct 2011 at Olympic Park, Sydney: http://tinyurl.com/24n9oy4
It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life.
Complaints If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2
People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.
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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for The Hep Review and Transmission Magazine. • proofreading for The Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker. Want to find out more? Please phone the Hepatitis Helpline for more information (see page 3).
Stay up to date with what’s happening in the hepatitis sectors. Take a look at the WDP website. It includes a training directory and has information and resources on harm reduction and health promotion, and provides updates on upcoming events. ASHM runs ongoing WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details. We invite you to use our website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at email@example.com or phone Ronnie Turner, Program Manager, 02 8204 0722.
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