The Hep C Review Winter
Rapid or early viral response: part of a new customised approach to hep C treatment FibroScan - coming soon to a tummy near you Obama disappoints with NSP backflip Cannabis and hep C â€“ research updates Acupuncture and hep C The Hep C Review Edition 65 June 2009 1
editor’s intro Council keyhole i folks and welcome to Edition 65. It’s Awareness Week 09 coming to you in a world bunkered
down in response to swine flu.
I heard on TV that researchers might have a vaccine for swine flu in about six months and couldn’t help but think of the twenty or so years we’ve been waiting for an effective hep C vaccine. We are certainly dealing with a clever little virus and we wait for good news on the hep C vaccine front. On other research fronts, we carry news on the CHARIOT treatment trial. It emphasises the need to consider combination treatment early – if you have genotype 1 – before you think you might need it. We also carry a commissioned article that provides an overview of current treatment and explains the new monitoring tools: early viral response and rapid viral response. Also in this edition, we cover Obama’s disappointing backflip on NSP. We hope that his decision not to support NSP in the United States will not translate to “more of the same” when it comes to the United Nation’s approach to global HIV and hep C harm reduction. We also cover FibroScan, cannabis and hep C, and acupuncture. All in all, some great winter reading for you. We hope that you enjoy Edition 65. Paul Harvey, Editor Ps: don’t hesitate to contact us with suggestions for the magazine’s commissioned articles and other content. If you feel we should be covering a particular issue, let us know. If we pick up and run with your idea, we’ll reward you with a $50 finder’s fee payment! Phone in and ask for Paul or email us at firstname.lastname@example.org or text us on 0404 440 103
Hepatitis Awareness Week was launched by the Hon Nicola Roxon MP, Minister for Health and Ageing, at an open air rock concert at Melbourne’s Federation Square on World Hepatitis Day 19 May. Minister Roxon reaffirmed her government’s commitment to continue to work to reduce the impact of the hep C and hep B epidemics. AW09 was the biggest and most successful national hepatitis awareness raising event in Australia to date with extensive media coverage on national and state television, national and local radio and in print media. The Council funded our first community grants program where $20,000 was allocated in grants of up to $1000 each for NSW organisations to hold awareness sessions and other local events. Particularly successful were radio and other media programs reaching people from culturally and linguistically diverse backgrounds. An excellent program on the impact of hep C on Aboriginal and Torres Strait Islander communities was aired on Speaking Out (17 May) – the national news, current affairs and lifestyle program that is broadcast on all local ABC radio stations across Australia. Street Shot, the HCCNSW-led photo-essay competition for young people was launched in Sydney on 21 May achieving primetime national ABC TV News exposure on the eve of World Hepatitis Day. HCCNSW arranged for a series of five community service announcements to be broadcast on (Continued on page 43.)
Weblink of the month
An evaluation report on tattooing trials in Canadian prisons. Also see Edition 51, page 12, and Edition 56, page 6. www.csc-scc.gc.ca/text/pa/ev-tattooing-394-2-39/index-eng.shtml
We acknowledge the people of the various Aboriginal nations across NSW as the traditional custodians of the land on which we live.
Cover pic based on image from http://images.google.com.au
acknowledgements Calling all members
Editor/layout/production: Paul Harvey Editorial committee: Tim Baxter Kay Bazley Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang Scott West
Look inside for our Membership Matters update (page 41). Our 2009 membership year began on 1 March 2009. We look forward to receiving your application or renewal. It’s now easier than ever – join or renew securely online by visiting www.hepatitisc.org.au or use the form at the back of this magazine.
The HCR medical and research advisors: Dr David Baker Prof Geoff McCaughan Prof Bob Batey Mr Tadgh McMahon Dr Cathy Pell Ms Christine Berle Ms Sallie Cairnduff Ms Ses Salmond Prof Carla Treloar Prof Yvonne Cossart Prof Greg Dore Dr Ingrid van Beek Prof Geoff Farrell Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA)
Seeking your story Personal stories provide a good balance to our information articles. Please consider writing in with your story. Published articles attract a $50 payment. Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you do not want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.
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Seeking your ideas We want the magazine to remain relevant to you, the readers. If you have any ideas we can use as topics for our commissioned articles (e.g. see page 16), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’. Just phone and ask for Paul, or email firstname.lastname@example.org or text us on 0404 440 103 •
Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) The Hepatitis C Council of NSW is an independent community-based, non-profit membership organisation. We are funded by NSW Health. Aside from HCCNSW editorial comment, the views expressed in this magazine and in any flyers enclosed with it are not necessarily those of the Hepatitis C Council of NSW or our funding body.
Contributions to The Hep C Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details although we do not publish them unless asked. We’re happy for people to reprint information from this magazine, provided The Hep C Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are stock photo models and the images are used for illustrative purposes only. The models have no connection to hep C.
The Hep C Review
contents Letters Inside feedback 5 An update from The Miner 5 News US approves re-treatment 5 Vertex push to get telaprevir to market 5 Albuferon unlikely to better interferon 6 Irish not getting antivirals 6 Hep B knocks out world title fight 6 It’s a done drug deal 7 Obama disappoints with NSP backflip 7 Chinese teen’s attempt to save father 8 Risky business: barbers re-using razors 8 US hep C research dollars funnelled to HIV/AIDS 9 Hep C in US army needle scare 9 Indian police bust used syringe racket 10 UK survey reveals public ignorance about hep C 10 Jail needle program could cut hep C 11 CHARIOT shows the need to treat sooner 11 New national advisory body 12 NSW health minister urges hep C vigilance 12 Justice Health appoints testing and treatments staffer 12 Funds to fight disease 13 NSW Health hep C strategy update 13 Art exhibit to give youth a voice on hep C 13 Police gain access to health info 14 New Aboriginal position at HCCNSW 14 Features Rapid or early response: part of a new customised approach to hep C treatment 16 CHARIOT leads to treatment re-think 19 Social determinants of health: unemployment 22 FibroScan monitoring: coming soon to a tummy near you 24 Countries supporting harm reduction 29 The little book of hep B facts 33 Grown blood could be circulating in 10 years 38 How inflammatory disease causes fatigue 39 My story Edward’s story: treatment trepidation and tips 15 Dave’s story: my liver donor’s presence 20 Kay’s story: sixteen weeks in 26 Peapod’s story: plastic bags and stigma 32 Juz’s story: from childhood self medication to health management 34
Opinion The war on drugs: a public policy disaster 28 Promotions HCCNSW supports NAIDOC Week 2009 10 Hep C bookmarks 33 Hepatitis C is a big issue for our mob poster 37 RPA Hospital sexual health clinic 42 Hep Connect peer support phoneline 42 halc legal assistance 43 Access All Areas AOD DVD 43 Paediatric viral hepatitis clinic 43 Transmission magazine 44 Council monthly support group meeting 44 Research updates Education services for clients of supervised injecting facilities 45 Prolonged therapy not useful after initial failure 45 Adherence to therapy boosts response 46 Albert Einstein College awarded A$17.8m 46 Discovery may aid development of new drugs 47 New studies examine hep B & C elimination 47 Cannabis and hep C treatment 48 Cannabis smoking as a risk factor for fibrosis 48 Cannabis and fatty liver 49 Cannabis associated with worse fibrosis 49 Tiny chemo beads boost liver cancer outcomes 50 Hep C transmission not reduced by C-sections 50 Interventions to reduce transmission of blood borne viruses related to injecting drug use in prisons 51 The effect of acupuncture on people with hep C: a randomised controlled pilot study 52 Regular features Council keyhole: Awareness Week 2009 2 Resource of the month: Let’s yarn up hep C poster 7 Q&A: Can hep C be transmitted through using someone else’s electric toothbrushes? 14 Harm reduction poster: cellulitis and septicemia 30 Hello Hep C Helpline: Marijuana and hep C 40 Membership matters 41 A historical perspective: from Edition 5, 1993 41 Interferon-based therapy 54 Complementary medicine 55 Support and information services 56 Noticeboard 58 Upcoming events 58 Membership form - renewal - tax invoice 59
the charismatic Obama gracing your front cover.
I am 40 and, unfortunately, in custody. There is a growing number of women coming into jail and I’ve been helping them with information about getting treatment, as it benefits one’s health. Can you please send some cards and booklets. Keep up the good work and all the helpful info. Kelly, NSW Thanks Kelly for the feedback and congratulations on your prison work. As requested, we’ll send you a bunch of information resources. Ed.
An update from The Miner (see Edition 64, page 19) It has been 10 weeks since I finished treatment and so far, I am showing good results - I’m free of the virus. Despite being very patient throughout the treatment, my wife is glad to have her old husband back, and my other family, friends and workmates, who were ignorant of what I was going through, are not so concerned about me anymore. I look great and I feel great and I’m glad I gave the treatment a go.
Stock photo - image via Google Images
letters news Inside Vertex push to feedback get telaprevir Hello and thank you for another great autumn to market issue of The Hep C Review with
US approves re-treatment USA — Schering-Plough has announced that the US Food and Drug Administration (FDA) has approved re-treatment of hep C with peginterferon-based combination therapy. Peginterferon (PegIntron) and ribavirin (Rebetol) combination therapy is no longer restricted to people who’ve never had treatment and may be used to treat kids three years of age and older who have compensated liver disease. “With the approval of Pegintron and Rebetol combination therapy, US physicians now have a treatment option that offers a second chance for success to certain patients who failed prior therapy,” Dr Robert Spiegel, chief medical officer and senior vice-president of the Schering-Plough Research Institute said. • By Laurie Barclay. Abridged from www.medscape.com (12 Mar 2009).
USA — Vertex Pharmaceuticals is likely to have enough cash to launch telaprevir for hep C treatment, with the sale of 10 million new shares. The shares will be sold at a price of A$41 each, bringing in A$410 million. Vertex will use the proceeds partly for development and commercialisation of telaprevir for hep C, according to a company prospectus filed with the US Securities and Exchange Commission. Vertex’s strategy is to commercialise its products both independently and in collaboration with major pharmaceutical companies. Vertex recently advertised for a director of marketing for telaprevir. This person will focus on developing and executing an integrated launch plan for telaprevir to build awareness, increase diagnosis, and ensure appropriate treatment with telaprevir. • Adapted from a news item by Catherine Hollingsworth, abridged from http://www. bioworld.com (20 Feb 2009) and an online job description: http://jobs. marketingpower.com/ jobdetail.cfm?job=3100594 (30 Mar 2009).
In Australia re-treatment of hep C was approved last year. Ed.
The Miner, NT
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It is likely that telaprevir will be available in Australia in 3-5 years time as a triple combination therapy with pegylated interferon and ribavirin. Ed.
news Albuferon unlikely to better interferon USA — Human Genome Sciences’ Albuferon has not demonstrated superiority to the current standard of care in a Phase III trial in treatmentnaive genotype 1 hep C patients. Although Albuferon’s less frequent dosing schedule is an advantage, the fact that it did not show superior efficacy in this area of high unmet need suggests that the drug is unlikely to threaten existing interferon therapies. • Abridged from http://drugdiscovery. pharmaceutical-business-review.com (20 Mar 2009).
Irish not getting antivirals Ireland — Relatively few patients who contracted hep C through injecting drug use receive effective antiviral therapy, a new study has found. The aim of the study, reported in the Irish Medical Journal, was to determine if supervised treatment in a drug treatment centre could improve compliance with antiviral therapy. The study demonstrated that effective treatment penetration could be improved for this patient group without the need for significant increases in resources. The study on methadone and HCV treatment was conducted at Dublin’s St. Vincent’s University Hospital. Approximately 56% of the injecting drug using population in Dublin have chronic hep C. Many have adverse prognostic markers predicting the development of serious liver disease. It is believed that there are in excess of 13,000 previous or current injecting drug users in Ireland. Using data from other cohorts it can be estimated that approximately 1,200 will develop cirrhosis. • By Gary Culliton. Abridged from Irish Medical Times (6 Jan 2009).
Hep B knocks out world title fight South Africa — The world International Boxing Organisation (IBO) junior lightweight bout between South African Zolani Marali and Fahsai Sakkreenin was cancelled because the Thai boxer had tested positive for hep B. The sensational development, unprecedented in South African boxing at this level, followed the tournament’s pre-medical press briefing and weigh-in at Emperors Palace when the 27-yearold Thai boxer was due to undergo his mandatory blood test. Sakkreenin initially refused the blood test but when pressed with the threat that the fight could not go on without it he revealed his hep B status to stunned officials. “There was nothing else to do but to cancel the entire six-bout tournament,” said visibly shaken Golden Gloves promoter Rodney Berman. “We hope to reschedule the bill when Marali will be able to challenge for the IBO crown against another opponent.” Mystery and amazement surrounded the shock turn of events, with no-one quite able to explain how the issue had only come to a head at such a late juncture — indeed why the IBO world title fight had been sanctioned in the first place. Boxers must undergo blood tests before all sanctioned fights and Sakkreenin has a distinguished record of 23 victories from 24 bouts, with nine knock out successes — but he has never fought outside of Thailand. The diminutive, engaging and likeable fighter, who earlier wore a perpetual smile, has won 18 fights in a row and was last beaten in April 2005. “We asked Sakkreenin and his manager to leave Emperors Palace immediately,” Berman said. “He can pay for his own flight back to Thailand. He should have known about the rules relating to blood tests that are in force all around the world and revealed his condition to us from the outset.” • By Sy Lerman. Abridged from www. businessday.co.za (18 Mar 2009).
It’s a done drug deal USA — Consolidation in the drug-making business continues apace. Merck & Co have recently agreed to buy Schering-Plough for A$59 billion in cash and stock, making Merck the second biggest drug maker in the US. The shares of Schering-Plough were boosted in the last few months, partly on speculation that the company could get taken over. This is the second big drug deal we’ve seen this year. Less than two months ago Pfizer agreed to buy Wyeth for A$87 billion. Pfizer is the largest drug maker in the world. Speculation will now turn to Bristol-Myers Squibb and other drug makers to analyse how they will compete in this further consolidated market. The drug makers face pressures from the expiration of valuable patents and government pressure to hold down costs as part of healthcare reform. • By John Carney. Abridged from www. businessinsider.com (9 Mar 2009). Schering-Plough is one of two companies currently supplying combination treatment for hep C. Ed.
news Obama disappoints with NSP backflip USA — President Obama’s budget released in May takes a step backward on a controversial political position he had taken during the presidential election campaign. Obama, during the campaign, pledged his support of needle exchange programs to slow the spread of HIV/AIDS [but Obama’s May budget maintains a prohibition of federal funds to support NSP]. White House spokesman Ben LaBolt said the administration isn’t yet ready to lift the ban and the White House website no longer features the president’s support of the program. “It’s hard to imagine how removing mention of support for a proven lifesaving program from the White House website is part of a grand strategy to ‘build support’ for syringe exchange,” Tom Angell, a spokesman for the group Law Enforcement Against Prohibition said. • Abridged from http://www.huffingtonpost. com (8 May 2009).
Resource of the month Lets yarn up hep C poster It is estimated that hep C affects Aboriginal communities up to four times more than the wider Australian community. Hoping to help address this, the Let’s Yarn Up Hep C health promotion poster has been developed, and supplies are now available across New South Wales. If you work with New South Wales Aboriginal communities and would like to order free copies, please email Dina Saulo at dina. email@example.com or phone Janice Pritchard-Jones on (02) 9515 8643. The poster and a special fax order form are both downloadable from our website: www.hepatitisc.org.au/resources/ inforesources.html • Also downloadable from our website is the Council’s faxback order form for more than 40 different hep C information resources.
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news Chinese teen’s attempt to save father China — China has been gripped by the fate of a 14-year-old girl who tried to kill herself so she could donate her liver to her dying father. The story of Chen Jin, who lay in a critical condition for almost two weeks after attempting to sacrifice herself for her father, has touched hearts across the country. Donations have flooded in to pay the family’s huge medical bills and well-wishers have even offered to give the father their own livers. The hospital in Nanjing, eastern Jiangsu province, has announced that Jin’s life is out of danger. But it added that a transplant could not have saved her terminally ill father. Jin had come across a medical letter explaining the extent of her father’s liver cancer. She waited until her mother was at the hospital and then attempted to kill herself. Approximately 10 hours later her mother returned home. “I saw my daughter lying quite still, as if she were dead, with two empty bottles of pills beside her bed and a suicide note,” Cui Lan, 43, told Nanjing’s Modern Express newspaper. The note read: “Mum, I am sorry that I could not be with you any more. Please give my liver to my father after I die.” Jin was rushed to hospital where doctors pumped her stomach twice and gave her a blood transfusion. For days her distraught mother tried to hide the truth from her husband, telling him that their daughter could not visit him because she was slightly unwell or busy visiting relatives. In fact she was lying metres away in the intensive care unit of the same hospital. • By Tania Branigan. Abridged from www. guardian.co.uk (6 Feb 2009).
Risky business: barbers re-using razors UK — Anyone who has had their neck, face or sideburns shaved at a barber in London and Middlesex County is being asked to contact the health unit and their barber after inspectors found some barbers re-using razor blades. Although the risk is low, re-using razor blades carries the possibility of transmitting blood-borne infections such as hep C, the health unit said. Associate medical officer of health Dr Bryna Warshawsky said people should ask their barber if razor blades have ever been re-used since they have been a customer. If the re-use of razor blades is suspected, the health unit is recommending people have their blood tested now and in six months. The health unit has inspected 30 barbers in the city and county and found a variety of practices, Warshawsky said. The majority followed proper procedures but others weren’t aware they shouldn’t re-use razor blades. Some were using blades that the health unit did not consider sufficiently disinfected, Warshawsky said. In order for someone to be infected from a razor blade, the blade would have had to be used to shave someone who had a blood-borne viral infection. Then whatever disinfection method was being used would have to fail to remove the virus. Finally, the virus would have to enter the skin of the second person through a cut or opening. “That is a chain of events that can happen, but is unlikely to happen,” Warshawsky said. • By John Miner. Abridged from http://lfpress.ca (28 Jan 2009).
US hep C research dollars funnelled to HIV/AIDS USA — The Hepatitis C Research Oversight Partnership (HepCop) has denounced the National Institutes of Health (NIH) for misappropriating millions of dollars budgeted for hep C research to funding for HIV/AIDS. Statistics unearthed by HepCop show the NIH misrepresenting HCV research funding. For example, hepatitis C grant money was awarded to determine such outcomes as Effects of HIV and host genetics in China ($645,840) and Nutritional status in HIV Hispanic drug users ($660,216). The inescapable reality is that the HIV research has been so heavily funded that it reached its successful goal of developing life-saving drugs years ago. For example, the rate of AIDS deaths in California’s newly infected patients has fallen 98% since 1992. “It is extremely disheartening to hep C patients and their families that HCV funds have been redirected to HIV when the NIH is spending only $20 per patient for HCV research compared to $2,774 per HIV patient research,” said Dr Richard Darling, HepCop spokesperson who has had three hep C related liver transplants. “Finding out that a large portion of that $20 is also being allocated for HIV research is a tragedy and an insult to HCV patients who are not suffering from HIV and who are waiting for the NIH to provide the research it promised.” • Abridged from www.prweb.com (27 April 2009)
news Hep C in US army needle scare USA — Sixteen patients exposed to a mismanaged insulin needle program have tested positive for hepatitis C, US army officials reported. The Texas army medical centre patients were among more than 2,000 diabetics who may have been exposed to blood-borne illnesses between August 2007 and January 2009 because of the program that systematically gave multiple patients injections from the same insulin pen. Lieutenant Col. Sandy LaFon, the hospital’s chief of preventive medicine, said it was unclear if the infections came from the improper insulin injections or were previously undiagnosed infections. Either way, the 16 patients are being treated and their blood is being tested to try to determine how they contracted the virus. LaFon said the hospital was launching an epidemiological study to try to match the types of hepatitis C found among the 16 patients to those of 39 other patients who had been diagnosed with hepatitis C before being treated for diabetes at the army hospital. But because not all of the patients who may have been affected have been screened, hospital officials may never know just how many people have become ill from being treated at the hospital, LaFon said. Regardless, she added, anyone newly diagnosed will be treated with all of the costs paid for by the army hospital. The scare is related to the use of an insulin pen system meant to allow a patient to use the same pen several times. But the pens were inadvertently used multiple times on different patients. Although a new sterile needle was used for every injection, health officials say the pens contain a reservoir of insulin, and blood could be transmitted from the needle to the remaining insulin. • By Alicia Caldwell ©AAP. Abridged from www.chron.com (10 Mar 2009).
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news Indian police bust used syringe racket
UK survey reveals public ignorance on hep C
India — Police have reportedly arrested the kingpin of a used syringe racket in India that has been blamed for an outbreak of hepatitis B in which 48 people died.
UK — Around a third of people do not know how hep C can be passed from person to person, according to government-commissioned research published this week.
Police raided 35 private hospitals and confiscated hundreds of thousands of recycled syringes, according to India’s NDTV private news channel.
The findings come as a major hep C awareness campaign is launched to reach out to the estimated 100,000 people in England who are unaware they have the infection.
The head of a private hospital was also arrested. The alleged mastermind of the racket who goes by one name – Saijuddin, collected the used syringes from private clinics and hospitals and resold them, the report said. Earlier in the week police arrested two doctors on accusations of homicide for spreading hepatitis B by injecting patients with contaminated syringes. The Press Trust of India (PTI) news agency reported that most of the infected patients had received treatment from the pair over the last two months. At least 48 people have died in a hepatitis B outbreak in the town of Modasa in western Gujarat state, and another 154 people have been infected. • Abridged from http://www.news.com.au (26 Feb 2009).
The poll conducted by ICM reveals that nearly one in four people do not know hep C can be passed on by sharing needles when injecting drugs or by using unsterile equipment when getting a tattoo, piercing or acupuncture. But one in eight wrongly think that hep C can be passed on by kissing and a third of respondents mistakenly believe there is a vaccine against it. “Twenty years down the line, it’s worrying to see the public still believe so many myths around hepatitis C. Education is absolutely essential to eradicating this problem,” Charles Gore, Chief Executive of the Hepatitis C Trust, said. “We are pleased to see the Department of Health campaigning on this issue but it’s now time for both the public and health professionals to take action,” he said. • By Steve Ford. Abridged from www. nursingtimes.net (27 Jan 2009)
The Hepatitis C Council of NSW is proud to support NAIDOC Week 2009 Honouring Aboriginal Elders Nurturing Aboriginal Youth
5–12 June 2009 www.naidoc.org.au 10
Stock photo - image via Google Images
news CHARIOT shows the need to treat sooner Australia — CHARIOT, an Australian study, has challenged the “wait and watch” approach to treatment of hep C patients by showing that early interferon treatment produces higher success rates.
Jail needle program could cut hep C
The study of more than 700 patients showed that treatment success among people with the “difficult to treat” genotype 1 increased from 30% among those with advanced liver scarring to 70% in those without liver scarring, according to co-author Professor Stuart Roberts from The Alfred Hospital in Melbourne.
Australia — Figures showing nearly half of prison inmates are infected with hep C have sparked renewed calls for needle exchange programs to be trialled in Australian jails.
“We found that up to seven out of 10 people with the most common strain of hep C (called genotype 1) may be cured if treatment starts before liver scarring or damage has occurred.”
About 42% of all prisoners and almost 60% of female inmates in the study of South Australian prisoners had hep C when they entered jail.
According to Stuart Loveday, vice-president of Hepatitis Australia, this research provides those people who have not yet received treatment with a good reason to consider their options.
“This is a startling statistic given that only 1.5% of the Australian population is infected,” Deakin University health researcher Dr Emma Miller said. The research, to be published in the International Journal of Infectious Diseases, found that inmates who entered prison with the disease were more likely to inject drugs during incarceration. The study also found needle sharing was common in jails. Dr Miller said the findings suggested each needle circulating in South Australian prisons was almost certainly contaminated with the virus. “It is entirely likely that this would also be the case in prisons around Australia,” Dr Miller said. “This has serious implications for prison staff and also for susceptible prisoners.” Dr Miller said Australian prisons’ zero tolerance of needle exchange programs put inmates not infected with the virus at risk. She said Australian governments needed to consider trialling a needle-exchange program in prisons such as those in Scotland and Germany. Canada is also considering a trial, Dr Miller said.
“Currently, fewer than 2% of Australians with chronic hepatitis C are receiving treatment. Some people with hepatitis C risk ongoing liver disease, liver failure and ultimately liver transplantation if they do not undergo timely treatment,” he said. “The number of people with severe liver disease as a result of hepatitis C has risen from 35,900 to 47,600 in the last five years. “The sad fact is that liver transplant may be the only option for someone whose liver has stopped working. End-stage liver disease due to chronic hepatitis C is already the most common cause of liver transplantation in Australia,” Mr Loveday said. Hepatitis Australia urges people with hep C to contact their local hepatitis organisation to find out more about this study, and hep C in general, and seek advice from their general practitioner or liver specialist about their treatment options. • Abridged from www.6minutes.com.au (22 Apr 2009) and a Hepatitis Australia press release (22 Apr 2009). Also see, “Chariot leads to treatment re-think,” on page 19.
• Abridged from The Age (17 Nov 2008).
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news New national advisory body Australia — The Australian government has established a new key advisory body on blood-borne viruses and sexually transmissible infections. The Ministerial Advisory Committee on Blood Borne Viruses and Sexually Transmissible Infections is chaired by Professor Michael Kidd. It will advise the government on a national framework for prevention and treatment, and play a role in implementing the new framework and monitoring its progress and effectiveness. The committee will work with public health, research and community groups and develop a three-year plan. Professor Kidd is joined by 14 members appointed as expert advisors, including Associate Professor Carla Treloar, Helen McNeill, Annie Madden and Professor Bob Batey. The committee has been appointed for a fixed term of three years and replaces the previous Ministerial Advisory Committee on AIDS, HIV Sexual Health and Hepatitis. • Ministerial press release (24 Mar 2009).
NSW health minister urges hep C vigilance Australia — NSW Minister for Health, John Della Bosca, has joined researchers and clinicians in urging the community to remain vigilant against the dangers of hep C and encourage those living with the virus to seek treatment. “Today (19 May) is World Hepatitis Day and 20 years after the hepatitis C virus was first discovered. Global statistics reveal that one in 12 people live with it, including 106,000 people in NSW,” Mr Della Bosca said. “In 2005, the State Government allocated $1.3million towards combating this disease, this financial year we will spend more than $7million. NSW is also leading the way by supporting the role of general practitioners and nurses in the provision of care to people [affected]. In addition, the NSW Government is investing in prevention programs such as the Needle and Syringe Program, and health promotion and education programs run by the Hepatitis C Council of NSW and the Aboriginal Health and Medical Research Council, along with an active research program. • Ministerial press release (19 May 2009).
Justice Health appoints testing and treatments staffer Australia — Justice Health provides services for NSW prison inmates who have hep C, are at risk of acquiring it or have never been tested for it. Inmates are encouraged to contact the public health or sexual health nurse in the health centre where they may be offered screening for bloodborne viruses or sexually transmissible infections. They may also be offered treatment for hep C. To enhance this service Justice Health has created a new position within the population health team – Project Officer Blood Borne Viruses – which has been filled by Giulia Rudge. Giulia will track patients on hep C treatment moving in and out of prison around the state.
She will be liaising with community treatment services to see if patients attend their appointments and will be requesting information about treatment response and sustained viral response (cure). She will also provide feedback to community treatment services for patients who come into jail already on hep C treatment. At this stage Giulia will not be having any patient contact so will not be able to contact patients in the community to assist them with attending their appointments. In some circumstances the Connections support workers will still be available for this. • Justice Health (24 Apr 2009).
Funds to fight disease Australia — The Hepatitis C Council of NSW has launched a $20,000 grants program to assist NSW community health organisations and health workers raise awareness about the risk, prevention and treatment of hep C in NSW. Grants of up to $1000 are being offered to support the development of new projects and activities aimed at increasing awareness and understanding about hep C, how the disease is spread, prevention and treatment. A wide range of education, awareness raising and health support activities are eligible for the Council’s grants – from information displays in NSW hospitals, peer education projects, health worker training, community participation events and nutritional support and health activities for people living with hep C. • HCCNSW (24 Feb 2009)
NSW Health hep C strategy update Australia — NSW Health is undertaking a review of the Hep C, HIV and Sexual Health strategies and recently organised a forum at Technology Park, Sydney. The forum was the final component in the review of the NSW Hepatitis C Strategy, NSW HIV/AIDS Strategy, NSW Sexually Transmissible Infections Strategy and the associated Implementation Plan for Aboriginal People.
news Art exhibit to give youth a voice on hep C Australia — More than 200 young people across NSW are helping to mark Hepatitis Awareness Week in a photo-essay competition that will culminate in an exhibition at Sydney contemporary art venue CarriageWorks. The Hepatitis C Council of NSW’s “Street Shot” photo-essay competition involves 20 youth services and brings together youth workers, young people and community in 15 suburbs and towns. Participants have been thinking and talking about how hep C is contracted, largely through sharing drug injecting equipment, but also through unsterile tattooing and piercing. Photo-essays explore the impact of risky behaviour on lifelong health and how to avoid exposure to hep C. “Street Shot is an innovative health promotion initiative that’s encouraging young people to learn about health and lifestyle decisions, and influence their peers, through art,” says Harpreet Kalsi, Hepatitis C Council of NSW Education & Development project officer. “It is imperative we get the message out to young people not to share any skin penetration equipment and to be blood aware,” she says. NSW has the highest number of hep C notifications in Australia. Most young people don’t know how the hep C virus is spread or how to protect themselves. There is no available vaccination and the virus can lead to serious liver damage.
It aimed to get participants to think together about how to address some of the challenges that have been identified during the strategy review, with the focus on identifying a small number of priority actions that can be collectively taken within the next 12–18 months.
The winners of the “Street Shot” photoessay competition will be announced at the CarriageWorks exhibition of the “Street Shot” photo-essays on Thursday 21 May, 3–5pm. The exhibition ran from Monday 18 May to Friday 29 May throughout Hepatitis Awareness Week at Carriageworks, 245 Wilson St Eveleigh NSW.
For more information, contact the Hep C Helpline.
• HCCNSW (29 Apr 2009).
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news feature Police gain access Q&A: Can hep C be transmitted to health info Australia — Police on patrol in New South Wales now have access to the National Police Reference System (NPRS) on which they can immediately view information on people from outside the state who have criminal records. The technology will allow police on patrol to query interstate details on suspects who may have no criminal history in New South Wales. Some uses include alerting officers to people who may have a contagious disease such as hepatitis. Previously police had access only to information about criminal activity in New South Wales. “This is ground breaking technology that will not only assist police in catching wanted criminals, but will provide police officers with additional safety,” New South Wales Police Minister Tony Kelly said in a statement. “Criminals no longer have any place to hide by fleeing interstate,” Mr Kelly said. • Abridged from The Western Advocate (13 Jan 2009).
New Aboriginal position at HCCNSW Australia — The Hepatitis C Council of NSW is proud to announce that Kerry Walker is joining the staff team as Coordinator – Aboriginal Projects. Kerry will be responsible for the development, implementation and evaluation of specific projects to increase the capacity of the Council to respond to key areas of Aboriginal health in New South Wales. Kerry comes to us bringing a wealth of experience in women’s support and Aboriginal NGO agencies. • HCCNSW
through using someone else’s electric toothbrush?
Although unlikely, it is believed that hep C can be transmitted through sharing someone else’s toothbrush. It’s believed that vigorous brushing can make the gums bleed and this may contaminate the brush. Someone else using the same brush soon afterwards and also brushing so vigorously that their gums bleed could be putting themselves at risk. Studies have suggested that the risk would be very low but it’s probably not the sort of thing that you would want to make a habit of doing. Electric toothbrushes shouldn’t introduce any additional risk as long as recommended instructions and cleaning practices are followed.
Q&A is a new feature. Please write, email, text or phone in with your question; see our contact details on page 3. Ed.
Edward’s story: treatment trepidation and tips
We’re incredibly lucky we live in a first world country that can provide such a sophisticated level of treatment, and provide it for next to nothing. If you suffer from hep C, have the treatment – millions of others in less fortunate parts of the world don’t even get the choice. The worst part for me was the trepidation I felt before the treatment began. It is natural to fear invasive and powerful drugs entering our body for a long period. But once you begin and get into a routine, it is all very manageable. This is what I learned. Avoid the internet Reading online diaries and personal reports from people who’ve taken the treatment will put you off because most people who put their experiences online are those who’ve had negative ones. Negativity breeds negativity. If I’d taken on board even five per cent of the online diaries I read, I’d probably never have left my apartment, let alone taken the treatment. Do more than you used to do If you work, continue going to work. Do not take time off to get acquainted with the drugs. They ain’t ever gonna like you and you ain’t ever gonna like them, so get on with it. The more time you spend not thinking about yourself the better. If you sit around all day thinking about the symptoms you are feeling, the more you will feel them. I was offered extra work in a field I hadn’t worked in before and I took it. I didn’t have time to feel tired or grumpy. Social and professional interaction will help mask any side effects you feel. When I came off the treatment I felt a sense of personal achievement about that. I’d pushed myself and succeeded in what most people consider difficult circumstances.
Keep your pre-treatment routine By this I mean if you play sport, for example, keep it up. I swam and played tennis and soccer every week. If you have regular social engagements don’t postpone them until you’re “better” because one thing you notice when you come off the treatment is that you don’t suddenly feel better or worse. Life is a continuum. On the treatment you don’t stop being you for six or twelve months no-one can afford to do that. You will have trouble, however, if the life you led pre-treatment is devoid of meaningful structure. A job and a steady relationship will help during treatment. Alternatively, regular activities and social interaction may suffice. Don’t expect to feel a million bucks when you’ve finished The treatment is not a magic potion. It takes time to wear off. Be satisfied that you’ve made it through, but don’t expect to feel immediately better. In any case, trying to feel how you felt before becomes a burden, and thinking you can is a myth because after a few months on the treatment you can’t remember exactly how you felt anyway. Just accept where you are and, once again, get on with it. In closing, I’d emphasise again that hep C treatment is an opportunity that lots of people don’t get. For God’s sake, take that opportunity. You’d be a fool not to. •
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t’s now 12 months since I successfully completed a six-month course of hep C combination treatment. It seems like such a long time ago and, to be honest, I can’t really remember the physical reactions I had. Suffice it to say, they weren’t quite as bad as the doomsayers would have you believe.
The Hep C Review
Rapid or early response: part of a approach to hep C treatment
Along with hep C genotype, rapid or early reduction in virial load is seen as an important predictor of tre Writing for The Hep C Review, Mary Sawyer reports on this new awareness of hep C treatment.
reatment for hep C has come a long way over the last 20 years. Treatment can lead to a complete cure and it can reduce your chance of long-term complications such as liver failure and liver cancer, improve your quality of life and prevent you from spreading hep C. Since 2004, standard treatment for hep C has consisted of weekly injections of pegylated interferon with twice-daily oral doses of ribavirin for six or 12 months. This treatment gives a cure rate of 50–80%, but it has its problems – it’s timeconsuming and can have unpleasant side effects. The latest development is the move to responseguided treatment which can be tailored to the individual person to maximise the chance of a cure while minimising the side effects. How do you know if you have been cured of hepatitis C? You are cured of hep C when there is no more virus in your blood. Your doctor will be able to tell you that you are cured if you have a sustained viral response (SVR) to treatment which means that no hep C virus can be detected in your blood six months after you finish treatment. Research has shown that an SVR to treatment is a good indication that you have cleared the virus for good. How can you tell how successful your treatment is going to be? Not everyone has the same results from antiviral treatment for hep C. For example, women do better than men, younger people do better than older people, people with a normal body weight do better than those who are overweight or obese, and people with less liver damage have a better chance of successful treatment. Your iron levels and your alcohol consumption can also affect how well you will go on the treatment.
Two of the most important factors that will predict whether you will have an SVR are the strain of hep C virus (genotype) you have and the amount of virus in your blood (viral load) before you start treatment. How can your genotype affect your treatment success? There are six known strains of hep C virus, known as genotypes 1-6. Each of these can be further divided into subtypes, such as genotype 1a, 1b, 2a, etc. Some genotypes are easier to treat than others. Your doctor can do a genotype test to determine your viral genotype and help decide the dose of treatment, how long you should stay on it and how likely you are to reach an SVR. In Australia about half the people with hep C (54%) have genotype 1, about a third (37%) have genotype 3, and genotype 2 accounts for approximately 5%. The rest of the cases of hep C in Australia is made up of people who have migrated from different countries: generally, genotype 4 is from Central Africa and the Middle East, genotype 5 from South Africa, and genotype 6 from South East Asia. If you have genotype 1 or 4 you are generally given 12 months of treatment and have about a 50% chance of a cure. If you have genotypes 2 or 3 you are generally given six months of treatment and have a 70–80% chance of a cure.
a new customised
Hep C viral load is the amount of hep C virus in your blood. The results of the viral load test, known as an “HCV RNA quantitative test”, are given as the number of International Units of virus in each millilitre of blood (IU/mL). Most people with chronic hep C have between 50,000 and five million IU of hep C virus in each millilitre of their blood. When the test cannot detect any virus in your blood, the level is “undetectable”. • A high viral load is considered to be above 400,000 IU/mL • A low viral load is considered to be below 400,000 IU/mL • Changes in viral load are sometimes expressed in terms of logs: a 1-log change means a 10-fold increase or decrease; a 2-log change is a 100-fold increase or decrease. Viral load cannot tell you how serious your infection is or how much damage the infection has caused your liver. Its main purpose is to predict how well you will do on antiviral therapy and to monitor how well you are doing once you start. The lower your viral load when you start treatment the better your chance of an SVR.
Viral load monitoring during treatment An early decrease in viral load while you are on treatment indicates that it is working. Research shows that people who respond early and rapidly also have a better chance of being cured. • Rapid viral response (RVR): a viral load of less than 50 IU/mL four weeks into treatment. If you have an RVR your chance of cure is better than 85% and your doctor may recommend that you shorten your treatment. • Complete early viral response (cEVR): a viral load of less than 50 IU/mL 12 weeks into treatment. If you have a complete EVR you have a good chance of being cured. • Partial early viral response (pEVR): a drop in viral load of at least 2-log (e.g. from 600,000 IU/mL down to 6,000 IU/mL) at 12 weeks of treatment, but still detectable virus in your blood. In people with genotype 1 the chance of viral clearance is low and treatment is generally stopped. If the virus in your blood is still detectable at week 24, you have a poor chance of having an SVR: it’s very unlikely (only a 1–2% chance) that you will clear the virus and therefore treatment is generally stopped. • Non-response (non-EVR): no significant drop in viral load in the first 12 weeks of treatment.
Stock photo by Sooperkuh via www.flickr.com
How can your viral load affect your treatment success?
The Hep The Hep C Review C Review Edition ED65 65
feature Figure 1. Treatment modifications table
Genotype 1 or 4
Genotype 2 or 3
Dose of ribavirin (can change depending on body weight)
Duration of treatment
Response (cure) rate
Your doctor may consider reducing treatment to 24 weeks
Your doctor may consider reducing treatment to 16 weeks
Treatment modifications RVR at 4 weeks and low viral load before treatment No EVR at 12 weeks
Your doctor may consider stopping treatment depending on how well you are coping with side effects Summary: Response-guided treatment recommendations Having a treatment schedule designed around how you respond to treatment is possible because the diagnostic tests are now available for genotyping and accurately measuring viral load. The main diagnostic test to measure as accurately as possible the levels of virus in your blood is the supersensitive polymerase chain reaction (PCR), TaqMan HCV test. Give yourself the best chance
Stock photo by Sooperkuh via www.flickr.com
There are effective treatments for chronic hep C. Getting the correct treatment at the correct time gives you a chance of clearing the virus from your bloodstream.
Recent research and advances in sensitive diagnostic tests have allowed doctors to make changes to the standard treatment to get you the best results: not all people with hep C should be treated the same. With viral load testing and genotyping, your doctor can tailor both your treatment dose and your treatment duration to avoid the downsides of treatment and give you a better chance of an SVR. For further details on any of the information in this article call the Hep C Helpline: 9332 1599 (Sydney) or 1800 803 990 (regional NSW). â€˘ Mary Sawyer is a Sydney-based health and medical writer.
CHARIOT leads to treatment re-think Earlier hep C treatment reaps significant benefits, reports Danny Rose.
The virus, which is a leading cause of liver failure, can be cured in a majority of cases if intensive drug treatment takes place before significant liver damage occurs, says Dr Hugh Harley. As head of clinical hepatology at the Royal Adelaide Hospital, Dr Harley was an investigator for the international CHARIOT study. The study took in almost 900 patients, including 700 from Australia, who had the most difficult to treat hepatitis C genotype 1. Results of the study were presented at the 44th Annual Meeting of the European Association for the Study of the Liver (EASL), which took place in May 2009 in Copenhagen, Denmark. The study found up to 70 per cent of people with genotype 1 hepatitis C can be cured with an early 12-month treatment with conventional drugs. “The sooner you get treatment, the more likely it is to be successful,” Dr Harley said. “Seven out of ten patients will be cured by treatment if they don’t have [fibrosis], whereas if they have already developed significant scar tissue the results are more like three out of ten.” “All the evidence we have would suggest that the virus is cured, and if it’s not cured then it’s in such small amounts that it is not doing any damage at all.” For the less resistant genotypes 2 and 3 of the hepatitis C virus, Dr Harley says the cure rate after six months of treatment is up to 80 per cent.
Australians estimated to have contracted the virus, which is transmitted through blood-toblood contact. Just two per cent of these people [are currently in] treatment for their condition, which if ignored can cause cirrhosis of the liver, liver failure or even liver cancer. “Despite our best efforts over 10, 20 years, the message is still not through to everybody who [has this virus],” Dr Harley said. “There are still people out there who think hepatitis C is a sentence but it’s not - it’s an illness that is treatable. “At the end of the day, we’re hoping these people are going to come forward now, that we’ll get to see them early in the clinical course of their disease with the prospect that our treatment is going to be that more successful.” • Danny Rose is a medical writer with AAP. Abridged from The Sydney Morning Herald (22 Apr 2009). The other main finding of this study was that induction dosing (high dose of pegylated interferon in the first 12 weeks alongside the normal ribavirin) does not lead to higher rates of sustained viral response (cure). The news about treating people with genotype 1 early, is based on 53 people (who had no fibrosis) out of a total of 896 people, all having genotype 1. Given the low number of people involved, there is debate among clinicians about this “treat genotype 1 early” message. Ed.
The non-medical side of the problem has been getting this message out to the 200,000 The Hep The Hep C Review C Review Edition ED65 65
Stock photo via www.images.google.com.au
epatitis C need not be a life sentence, an expert says, as a major Australian-led study shows how early intervention can in most cases lead to cure.
Dave’s story: my live
was unconscious for the better part of two days. The next thing I remembered was somebody asking me to blink my eyes – twice, so it wouldn’t be accidental. I was asked to move my toes and I remember being very pleased that I could do so. I was in the intensive care facility. They had me in restraints, with an oxygen tube down my throat so I couldn’t talk. I remember one nurse there, a woman, short, Hispanic, and her name was Elena, I think. She had incredible patience. I also remember a tallish Vietnamese woman and several others, like a circle of angels around me. “Diane [my wife] had a pad of paper for me to communicate with and I remember my handwriting was rough. It looked like those scripts they find from an Arctic explorer with the handwriting going off the edge of the page, you know. But someone asked me how I was doing and I remember answering, ‘With all these lovely women around, how could anything go wrong?’ “During all of this, breathing became the central focus of activity. Somehow I had lost the connection with breathing. All I could think about was drawing air in and out. I couldn’t do it without thinking about it. I wrote down, ‘Fifty-six years of age and I still haven’t mastered the art of breathing.’ It was much laboured.
“At some point there was a crisis with another patient nearby and so they were distracted away from me. At that time I became aware that, though the nurses would have been standing on the right side of my bed, there was a presence to my left. I could never see a face but there was a vivid impression of another person, another presence coaxing me to breathe the entire time I was awake. I was awake for two days after I came out of the anaesthetic. That presence never left my side.” At this point I asked Clark [Dave] if any problems had presented themselves for the surgeon, Dr Barry.
“Yeah, after my transplant had been done, which took about five hours, and that’s normal, they discovered I had a blood clot in my liver so they had to go back in. This was very late at night and Diane was down in the cafeteria. The nurse went running down there, found her and said, ‘Come with me right now!’ She went with them back up to the ICU and had to sign papers for the second operation. That went on well into the morning so I was actually operated on twice.” Clark’s predominant impressions of the experience involved imagery of a mythological underworld. “I was taken, at various points, down into hospital corridors in the basement. I began to notice that all the terminology in medicine is Greek based, like the names of characters out of Greek mythology. My mind would pick up on cues very easily and then run with them. I was very amused by it. I kept having the feeling that I was in some kind of after-death experience that, had you gone digging in some old hieroglyphic papyri, you would find the details of it. “That feeling persisted for rather a while. I remember thinking afterward, in terms of advice for others: it’s good to fill your mind with interesting stuff, read the classics, because you never know when you might find yourself flat on your back on a gurney with a lot of events flowing by you. I felt well served by it. “What I hadn’t been aware of, or maybe prepared for, was that there was this whole other experiential, spiritual aspect to this transplant thing that accompanied it, triggered it. I really had never talked to anyone who had discussed this aspect of it. It’s a very powerful experience, still going on here more than a month later, still manifest. It is, in fact, a journey to the underworld. The liver, to the Greeks, was the seat of the soul, not the heart, like we talk about today as a kind of metaphor of our being. I seem to remember that Prometheus, who stole fire from
“there was a presence to my left. I could never see a face but there was a vivid impression of another person, another presence coaxing me to breathe the entire time I was awake.”
er donor’s presence “So I thought I was not prepared for this experience but I had been really preparing for it my whole life. Being wheeled around on gurneys in the underground of this hospital had such mythological associations. I was just flooded by religious imagery. It was the crescendo of epiphany.” During this time Clark wrote poetry, including one very Japanese or Zen-inspired poem of blank verse. “I had been reading a lot of Japanese and Chinese poets and they were an influence on what I was doing. Having a transplant is like diving off of a high board: you’re either in or
you’re out. Once you jump off the end of the board, you’re in, there are no second thoughts. I have learned to trust in God, or whatever name you care to put to it. “I call Him God. It really helped me and I can say that there was no fear involved. I knew that the donor was 24 years old, though the circumstances of his death are unknown, and I feel his presence, along with a sense of responsibility to do something good with the rest of my life. To do something with it in a positive way.” • By John Brizzolara. Abridged from The San Diego Reader (12 Nov 2008). This is the second part of David’s story. Part 1 is in the previous edition of The Hep C Review. Ed.
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the gods and gave it to mankind in Greco-Roman mythology, was punished by being chained to a rock and every day vultures would tear out his liver. Then it would grow back and he would experience this tremendous pain every day.
The Hep The Hep C Review C Review Edition ED65 65
Social determinants of he This article by Richard Wilkinson and Michael Marmot introduces Social determinants of health: the solid facts, a discussion paper from the World Health Organization.
ven in affluent countries people who are less well off have shorter life expectancies and more illnesses than those who are better off. Not only are these differences in health an important social injustice, they also draw attention to some of the most powerful determinants of health standards in modern societies. In particular, they have led to a growing understanding of the sensitivity of health to the social environment and to what have become known as the â€œsocial determinants of healthâ€?.
4. 5. 6. 7. 8. 9. 10.
Social Determinants of Health: The Solid Facts is a booklet that outlines the most important parts of this new knowledge. The ten topics covered are: 1. the social gradient 2. stress 3. early childhood
Health policy was once thought to be about little more than the provision and funding of medical care; the social determinants of health were discussed only among academics.
social exclusion working conditions unemployment social support drug dependence food transport
Each chapter contains a brief summary followed by a list of implications for public policy.
As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we also need to feel valued
Unemployment Job security increases health, wellbeing and job satisfaction. Higher rates of unemployment cause more illness and premature death.
What is known Unemployment puts health at risk, and the risk is higher in regions where unemployment is widespread. Evidence from a number of countries shows that, even after allowing for other factors, unemployed people and their families suffer a substantially increased risk of premature death. The health effects of unemployment are linked to both its psychological consequences and the financial problems it brings â€“ especially debt. The health effects start when people first feel their jobs are threatened, even before they actually become unemployed. This shows that anxiety about insecurity is also detrimental to 22
health. Job insecurity has been shown to increase effects on mental health (particularly anxiety and depression), self-reported ill health, heart disease and risk factors for heart disease. Because very unsatisfactory or insecure jobs can be as harmful as unemployment, merely having a job will not always protect physical and mental health: job quality is also important. During the 1990s, changes in the economies and labour markets of many industrialised countries increased feelings of job insecurity. As job insecurity continues, it acts as a chronic stressor whose effects grow with the length of exposure; it increases sickness absence and health service use.
and appreciated. We need more social interaction within society. We need friends and the feeling of being useful. And we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.
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By tackling some of the material and social injustices, social policy will not only improve health and wellbeing, but may also reduce a range of other social problems that are associated with ill health and are rooted in some of the same socioeconomic processes. • In ED61, we began our coverage of Social Determinants of Health. Over the following editions of The Hep C Review, we are featuring the remaining topics (far left) that underpin this social viewpoint. Ed.
Policy implications Policy should have three goals: to prevent unemployment and job insecurity; to reduce the hardship suffered by the unemployed; and to restore people to secure jobs. • Government management of the economy to reduce the highs and lows of the business cycle can make an important contribution to job security and the reduction of unemployment. • Limitations on working hours may also be beneficial when pursued alongside job security and satisfaction.
• For those out of work, unemployment benefits set at a higher proportion of wages are likely to have a protective effect. • Credit unions may be beneficial by reducing debts and increasing social networks. In the next edition of The Hep C Review we will cover social support. • Abridged from Social determinants of health: The solid facts (second edition), World Health Organization, 2003. The full booklet can be downloaded from http://www.euro.who.int/ document/e81384.pdf
• To equip people for the work available, high standards of education and good retraining schemes are important.
The Hep C Review
FibroScan monitoring: coming soon to a tummy
As part of the “Conversations with experts” series, our national peak body, Hepatitis Australia, spoke w Associate Professor Stuart Roberts in an exploration of the new FibroScan liver-monitoring technology
nowing the level of liver fibrosis is important in monitoring hep C disease progression and in making decisions about treatment. In this article we will be exploring FibroScan: what it is, how to access it in Australia, how it works and how accurate it is.
Liver biopsy has long been considered the gold standard in measuring fibrosis and, indeed until 2006, people with hepatitis C could not access government-funded treatment unless they had this procedure. However, liver biopsy is an invasive procedure which can be painful, and carries risk of complications. It is also costly and does not always provide accurate results. FibroScan is a new device that uses transient elastography to measure the elasticity or stiffness of the liver – the stiffer the liver, the more severe the hepatic fibrosis (scarring). A relatively new technology, there are currently only five in Australia – at the Alfred Hospital (Melbourne), Concord Hospital (Sydney), Liverpool Hospital (Sydney), St Vincent’s Hospital (Sydney) and Greenslopes Hospital (Brisbane). Associate Professor Stuart Roberts of the Alfred Hospital in Victoria believes that FibroScan will become a standard monitoring tool for hep C. “It is very likely that FibroScan is going to become fairly standard for patient assessment in most liver clinics and probably many private clinics. Given the interest we have had in Victoria amongst specialists and GPs, I think demand is only going to grow, and grow quite quickly,” he said. A series of FibroScans can show the increase, decrease or plateauing of a person’s liver fibrosis, not unlike an ultrasound. “FibroScan is an ultrasound-like device that assesses the degree of liver damage, in particular scar tissue – or, as clinicians call it, fibrosis – through a measurement of liver stiffness,” Professor Roberts said.
“It does this by sending a mechanical vibration wave through the liver. The speed at which that wave travels through the liver is measured via ultrasound as it detects the sound wave reflection. This is then computed into a reading that measures the elasticity of the liver – or, conversely, the stiffness of the liver. The more scarred or fibrotic the liver is, the stiffer it is, hence the higher the reading.” While FibroScan is unable to accurately detect fibrosis in 100% of cases, Professor Roberts said there are a number of advantages of FibroScan in comparison to liver biopsy. “FibroScan is non-invasive and, for patients, that means a pain-free experience when clinicians are assessing their liver disease. It is a simple procedure that can be done in an outpatient setting relatively quickly – a typical test would take no more than ten minutes, 15 minutes in more difficult cases such as those who are overweight.” “Liver biopsy can involve a lot of anxiety for people, whereas FibroScan is much more patient-friendly with minimal anxiety attached,” Professor Roberts said. All this being said, Professor Roberts states that FibroScans should be thought of as a complementary tool, to be used by clinicians to assess their patients, and not as a replacement for liver biopsies. “It’s not perfect. It certainly does not replace the need for liver biopsy, but it’s a very useful assessment tool that provides important input into a clinician’s assessment of patients with liver disorders. “FibroScans can be used to supplement decision making as to whether a biopsy is helpful or not,” he said. “They are also a tool which can certainly assist greatly in identifying patients with undiagnosed
with y. liver disease. We have had a number of cases where we have diagnosed cirrhosis where cirrhosis wasn’t expected. “What we can confidently say with FibroScan is that it’s a very good tool for assessing the severity of liver disease at both ends of the spectrum; that is, it’s extremely good at picking up mild or minimal disease, and very good at diagnosing cirrhosis, with 90–95% accurate positive predictive value,” Professor Roberts said. “It is not as good at differentiating between fibrosis stages for people with more moderate disease – those with stage 2 or stage 3 disease. “It cannot reliably tell you that this person has stage 2 or 3 disease with the same degree of confidence that it can for saying this patient has minimal fibrosis or cirrhosis. “The evidence to date suggests that FibroScan is right at the top end of the spectrum of tools for assessing fibrosis and cirrhosis. “Such a valuable tool should not go underutilised by people with hep C. While cost may be an issue for many people, you should check with the centre closest to you,” Professor Roberts explained, “as it may cost next to nothing.
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“Costs may vary from clinic to clinic, but at the Alfred Hospital we do not bill patients, so people are not out of pocket for the test. “It does not as yet have a Medicare item number but it is hoped that in the future this will occur,” he said. • Abridged from Transient elastography (FibroScan) via www.hepatitisaustralia.com (24 Apr 2009).
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Kay’s story: sixteen wee I
first found out I had hepatitis (non-A, nonB) back in 1986 and immediately gave up alcohol. I didn’t think much about it (as I didn’t seem to have any particular symptoms), except that the cause must have been a blood transfusion I had back in 1980. I had injected (only three times) a few years before that, though, sharing a needle each time. But I didn’t think that this was the route of transmission because the other two people I shared with did not have the virus while the units of blood I received were from five different people!
Photo by melodramababs via www.flickr.com
But, as time goes on I tell different practitioners my story and they tend to think that my injecting was the cause. Rather narrow-minded of them I think. Also, thinking back to the two times I was in hospital for surgery (unrelated to hep C), I was the last person of the day to have surgery. I didn’t think about it then, but later I thought that it was because I had hep C that I was left to the very last? And I suffered from not
being able to eat all day – I am hypoglycaemic. I did tell them that and they tested my blood sugar throughout the day but I was “alright” according to them, which didn’t assuage my distress. I believe this was discriminatory.
I did try to find out through the blood bank who my donors were. Eventually I found that four of them didn’t have the virus and the fifth one had died and I could not get any more information – I’d hit a brick wall. Who can ever say what the real cause was? I was working here and there and it did not seem to impede me in any way. I did not drink for most of the time, except on the odd occasion, and then only one or two at the most. Then, after working full time for three-and-ahalf years as a microfilm camera operator I became extremely tired. I soldiered on but I did not get any better, only worse. That was late 1991.
eks in My doctor came up with the diagnosis of chronic fatigue syndrome, especially as I was working with chemicals for processing film, etc. I took end-of-year holidays in the hope I would recover enough to go back to work. But I didn’t feel any better. During that time, after some more tests, it was found that I had hep C. I don’t recall my reaction back then. Just that I had to stop working for a while. I ended up on Sickness Benefits for two years, and then, as I was not getting any better, I ended up on the Disability Support Pension. After more time I got a bit better and then started to do part-time courses at TAFE to try to get into a different line of work. I ended up just doing part-time work here and there. In the meantime, I looked at doing the treatment for hep C, and even had a couple of liver biopsies (never again, I hoped) that showed mild fibrosis, but when I found that the treatment would make me feel sick, I decided I would not do it; I had no-one to help me with things and generally just thought it was all too much, especially as I was prone to depression, there was no guarantee it would work anyway and I had genotype 1 (I thought) the hardest of all to treat! Then, throughout 2008, I became tired again and my liver functions became abnormal. As I was not drinking, I got a bit worried that my liver might pack it in or some such thing.
Even though my age – 50 – and the length of time I had this virus were factors, I found that I actually had genotype 2 and was extremely hopeful, as my chances of recovering got so much better! I began the Pegasys RBV treatment at the end of November 2008. I am now 16 weeks into treatment. And, as I expected the worst, it is not as bad as I thought it would be, although at this stage I feel some things are getting a bit worse – mainly fatigue, aches and pains, poor memory and some hair loss. But the best news of all is my tests revealed the virus as “undetected”! I have been using my time, as far as the side effects allow, to clean out some stuff I have accumulated over the years and catch up on reading and improving myself. I’ve been known as being a bit of a grouch, to say the least, and when I heard the treatment would exacerbate this type of behaviour I tried to brace myself. I have had a few outbursts, usually when no one is around, but I feel, because I’ve done some work on this aspect of myself already, I have a head start in minimising this and I think I have, somewhat. I’m hopeful of ridding myself of this virus in the long run, but I keep in mind that I could relapse so as to not be too disappointed if that happens. But still I keep my fingers crossed. Kay, Sydney
After seeing my doctor about it, I decided to take the treatment. I was too tired to offer any resistance, something I had done for so long, and I wasn’t working and now had a friend who could help me out. Also, there had been improvements to it since I had first heard about it. So, it was back to the RPA liver clinic for the usual tests, etc. (thankfully, no liver biopsy this time) and I was accepted for the treatment. It felt like things just fell into place.
The Hep C Review
The war on drugs: a public policy disaster A failure to acknowledge reality will tarnish the United Nations, writes Evan Wood in The Lancet.
llegal drug use has long been considered a threat to community and public health. In response, UN conventions (1961, 1971 and 1988) criminalised the possession, use and manufacture of illicit drugs. The conventions have been strongly supported by the US Government since 1971, when President Richard Nixon described illicit drugs as “public enemy number one” and formally declared the nation’s “War on Drugs”. In June 1998, the UN General Assembly hosted a special session on illegal drugs under the slogan, “A drug free world – we can do it”. The session set out international drug-control goals for the subsequent decade and reaffirmed support for the existing UN drug-control treaties, which require UN member states to develop national policies based on strict law enforcement. A decade on, during this year, the UN’s Commission on Narcotic Drugs will meet to evaluate international progress towards the goals set out in the 1998. The meeting will also prepare the final draft of a declaration aimed at setting international drug-policy goals for the coming decade. Sadly, the biases inherent in the UN’s drug-control system have been well described, and it is questionable whether meaningful change will emerge from this process. If so, this process will only further discredit the UN drug-control regime, given the War on Drugs has been a failure. Under current drug-control, a massive illicit market has emerged, with an estimated annual value of US$320 billion. In some cases, these enormous illegal revenues threaten the political stability of entire regions. Increased drug-law expenditures have not prevented the growth of this market; instead, a long-term pattern of falling drug prices and increasing drug purity and supply has been observed. Beyond being ineffective, increasing expenditures on drug-law enforcement have also been associated with severe unintended harms. For instance, in the USA, the jailing of illicit-drug offenders has contributed to the world’s highest incarceration rate. Mainly as a result of drug-law enforcement, one in eight African-American men aged 25–29 years was incarcerated on any given
day in the USA in 2007, despite the fact that ethnic minorities consume illicit drugs at similar rates to other populations in the USA. An additional concern is the consistent association between drug prohibition and increased drugmarket violence. A recent example is the upsurge in severe drug-related violence in Mexico coinciding with Mexican President Felipe Calderón’s announcement of an escalation in the fight against Mexican drug traffickers. Chief among the public health concerns is the transmission of blood-borne viruses. The largest numbers of drug injectors live in China, USA and Russia; it is no coincidence that these three nations also have among the world’s most punitive drug laws and lead the world in the number of incarcerated people. Clearly, the preponderance of evidence shows that the UN drug-control framework has not only been ineffective but has resulted in a range of severe unintended harms. If the UN system fails to acknowledge this reality and does not open up to more evidence-based approaches during its upcoming review process, it will tarnish the reputation of the entire UN system. It will also help perpetuate the needless human suffering and enormous social costs that have emerged under the existing global drug-control regime. • Abridged from Wood E, et al. The war on drugs: a devastating public policy disaster. The Lancet. 2009; 373:989–990. Table, right, from Cook C & Kanaef N. The Global State of Harm Reduction 2008: Mapping the response to drug-related HIV and hepatitis C epidemics. International Harm Reduction Association. 2008. Ticks indicate a) National government policy and/or strategy documents on HIV, hepatitis C and/or drugs include explicit reference to harm reduction, b) at least one needle and syringe exchange programme is operational in the country, c) at least one opioid substitution therapy programme is operational in the country.
The Hep C Review
The Hep C Review
Peapod’s story: plastic bags and stigma
My hackles rose recently when I read a letter in Drink and Drug News from Kenneth Eckersley, the CEO of the UK Addiction Recovery Training Services. I don’t think Mr Eckersley likes addicts.
Recovery is a good news story, so why do recovering addicts still suffer from stigma?
He thinks we are responsible for a slew of societal ills: we mug and rob old people, are responsible for bringing prostitutes into towns, sell drugs to children, disrupt schools and bankrupt businesses.
y dictionary defines stigma as a mark of disgrace or infamy; a stain or reproach. It’s a problem for addicts like me. I’ve been subject to it a few times in both active addiction and in recovery.
Eleanor Roosevelt said: “No one can make you feel inferior without your consent.” That’s a really empowering statement, though you need a bit of healthy thinking and self-esteem to put it into practice. Many of us don’t have that in active addiction or early recovery. Similarly, Victor Frankl, a concentration camp survivor said: “The one thing you can’t take away from me is the way I choose to respond to [you].” What I take from this is that I don’t need to react to stigma and if I feel good about me and my recovery, I can still hold my head up high.
I don’t think correlations with global warming and the extinction of the dinosaurs are mentioned in his list, but perhaps the letter was edited for length. I think to work in this field (drug treatment), you have to have a fondness for addicts. You need to like them. Not everyone does. Our addict behaviour can be challenging at times but essentially we are just people who’ve drifted from our values due to getting derailed by drugs. We’re not evil. Stigma is a massive issue for us all: families, practitioners, addicts. We need to challenge it and show it for what it is: unfounded and based on fear. Stigma is like a dog doing its business on a pleasant pavement. I don’t like it, it smells horrid and, to be honest, brown was never my colour. And if I come across it, I certainly don’t have to step in it.
Photo by MightyBoyBrian via www.flickr.com
If I’m in a good space and am prepared, I can swoop down, scoop it up in a clear plastic bag and run down the street waving it for everyone to see what it really is: poop! Plain and simple poop.
I believe there are ways we can fight stigma. When we find it we don’t need to bow to it, get it on our shoes or believe its sewer message. We are addicts in recovery. We are good people doing our best. Those who stigmatise us can go poop somewhere else! • Abridged from PeaPod, http://wiredin.org.uk (23 Mar 2009). Drug and Drink News can be found at www.drinkanddrugsnews.com
ur hep C bookmarks have proved handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • taking them to your local library • taking them to your local community centre. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hep C Helpline (on 1800 803 990). • HCCNSW
The little book of hep B facts
Stock photo via www.images.google.com.au
hep C bookmarks
Do you know your facts about hep B? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep B Facts, Hepatitis C Council of South Australia. • Hep B is a vertical transmission, bloodborne and sexually transmitted virus that causes inflammation of the liver. Over time this may lead to scarring of the liver and serious liver damage, including liver cancer. • There are seven classified genotypes (strains) of hep B. • Hep B was identified in 1965 and named “the Australia antigen”. • Hep B is not the same as hep C or HIV. Infection with any one of these viruses does not lead to infection with the others.
Hepatitis C is not classified as a sexually transmitted disease The virus is transmitted when infected blood from one person gets into the bloodstream of someone else For more information about how hep C is transmitted, visit www.hepatitisc.org.au or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the liver Hep C is transmitted when infected blood from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker does not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
or call the
Hep C Helpline
• Hep B can be found in the blood and some body fluids, such as the semen or vaginal secretions of affected people. • In developing countries most people with hep B acquired it from their mothers at birth or in early childhood from exposure to infected blood through open cuts or scratches. See following editions of The Hep C Review for all 38 hep B facts – or check out the booklet at www.hepccouncilsa.asn.au/ littlebookB.html
The Hep C Review
Juz’s story: from childhood s to health management
grew up in a very dysfunctional family. Both my parents were health professionals and were unable to deal with emotional issues. I developed asthma as a young child. When I was sick my parents medicated me and nursed me. My asthma became a vehicle for getting my needs met. Once I started school, I was left to manage my medications on my own. In retrospect, this set up a pattern of self-medicating to cope with emotional issues. As a teenager I felt alienated, both from my family and at school. I wasn’t able to find a constructive outlet to develop my self-esteem. The only way to get attention was to act up. I started drinking and then taking drugs. I remember thinking that drugs were frightening but also thrilling. I thought everyone would be in awe of me. Instead of being geeky and full of selfloathing, I felt cool and dangerous.
Photo by nick see via www.flickr.com
At sixteen years old I fell into a social group where everyone was struggling in the same way. We all had troubled families and little self-confidence.
I wagged school and hung out in a dilapidated bungalow. In this oasis from school and home, I found a place where I was validated and admired by my peers. I started injecting amphetamines at sixteen. They were like anti-depressants. Drugs simplified life in some ways. They gave me something to think about, to drive for, and most importantly, they muted the suffocating depression that was a legacy of my childhood. This was in the 1980s. If anyone noticed that I was going off the rails, they didn’t mention it. No-one approached me and tried to help – it just didn’t happen. In those days you got detention or you were grounded. There was no support at all. My friends and I were introduced to this older man. We were sixteen; he was twenty-eight and an experienced drug user who had previously been arrested for trafficking heroin from Thailand to Australia. He had extensive connections in the drug scene. Until then, we mainly smoked marijuana. After he arrived we had a pipeline to copious amounts of amphetamines.
My boyfriend must have had some experience with the dangers of sharing fits because he was pedantic about not sharing. We would buy a box of a hundred needles and he would never share with others. He had total control of the drugs and would always inject me with his syringe after he’d finished his hit. In some ways I’m grateful to him. While I got hep C from him, he probably protected me from other blood-borne diseases. Things changed when the amphetamines supply dried up. My boyfriend started taking heroin but I’d tried it a couple of times and didn’t like it. I started to straighten up and, when the amphetamines supply returned, I took control of measuring out my own dose. I gave myself a much smaller amount – one dose in the morning and one in the evening – just like administering a prescription medication.
It is very difficult to stop taking drugs when you live in a drug culture but I knew that taking drugs was a dead end for me. One morning I woke up and realised I didn’t want to do this anymore; I just stopped. When I look back, I am amazed at my single-mindedness. After I stopped I was extremely run-down. I was malnourished and slept twenty hours a day. Even though I wasn’t taking drugs, I was still living in the terrifying environment of heroin dealing. My boyfriend ran out of money and started ripping off other heroin dealers. I remember sleeping with a shotgun next to our bed. I started taking Rohypnol and drinking, not only to deal with the fear, but also to manage the emotional pain that had caused me to seek out drugs in the first place. When you come off drugs you are very susceptible to other addictions. I went straight to alcohol and drank everyday. I knew this wasn’t the way to live. But I just needed a kernel of something to believe in, a sense that I could be more than this, that I could
Stock photo via www.images.google.com.au
When I look back, I believe this man cultivated me and my group of friends. He was our drug dealer and his social life became a group of sixteen-year-olds. I became his girlfriend and it was a very abusive relationship. I ran away from home to live with him. He had all the power. I had no money; my family didn’t know where I was; my only friends were buying drugs from him. He collected the dole for me but I never saw a cent. I was incredibly naive.
The Hep The Hep C Review C Review Edition ED65 65
my story have a fulfilling life and feel good about myself. It took me about another six months before I left him. I was finally able to leave when I met someone else. I was very dependent with no education, job, money, friends or family. My new boyfriend and his family literally took me into their home and supported me. They fed me, paid for me to get my licence, provided me with a car and eventually found a place for us to live in. We were both eighteen, ex-users and living in a flat together. We were trying to play grownups when we were really just kids. He was smoking dope and I was drinking everyday but we managed to make this life for ourselves. His parents enrolled me in secretarial school and I got my first job. That was a critical point in my life – it was like a seed being planted. For the first time in a long time I felt proud of myself. More importantly, it gave me financial independence. It was six years before I was diagnosed with hep C. In that time I worked in a good job in the corporate sector, broke up with my boyfriend and backpacked for a year through Europe and Canada. When I was diagnosed in 1992, the diagnosis did not impact on me. I was really tired and I went to the doctor, who gave me blood tests, including a liver function test. My ALTs came back elevated. I was asked if I had ever injected drugs and when I said I had, I was tested for hep C. In retrospect, getting the diagnosis was a strange experience. I was told, “You’ve got hep C, so don’t share your toothbrush or razor.” That was it. I just thought “I have got this thing and I shouldn’t share my tooth brush.” I didn’t understand the long-term implications of a chronic illness or even know about side effects. Mind you, it was ’92, and nobody really understood it.
A few years after I was diagnosed, I was referred to a specialist. I would go and see him once a year and he would smile and tell me that everything was fine and there was no need to worry. Then in 1998 I felt unusually fatigued. I saw the specialist and was told that my ALTs were in the five-hundreds. It was the first time I realised that hep C could potentially cause me serious ill health. It gave me a hell of a fright. I am still surprised at how little information I was given by the medical profession about my illness. They are quite happy to give you information about your ALTs or tell you your fibrosis score, but often they don’t think beyond the numbers and the physical manifestations of the disease. I have always been someone who seeks out more information, so I did my research and discovered the Hepatitis Council in Victoria who gave me support, advice, referrals and access to research data, and helped me to get to know my disease. We all handle our health differently. Some people prefer to know as little as possible, and that is a valid option. I wanted to know what I could do to manage this disease. I enrolled in a course which introduced ideas about diet, meditation and health self-management. My ALTs settled and my specialist started talking about treatment. Little did I know, this was just the beginning. •
Juz, VIC Juz’s story is continued in the next edition of The Hep C Review. Ed.
At that time hep C was the least of my worries. I was still battling multiple addictions. I finally gave up drinking but it was replaced with an eating disorder. Eventually, I started psychotherapy, which I continued with for the rest of the decade. During that time I returned to studying my VCE and a university degree – and went on exchange to the USA. I went back to work and further developed my career. Then in 1998 I had my first flare-up of hep C.
Stock photo via www.images.google.com.au
You can get hep C from blood to blood contact
1 in 12 people globally have hepatitis B or C You can get hep B from blood to blood contact and unprotected sex
Hepatitis is a big issue for our mob. Many of us are living with hepatitis B or C. Treatment is available. Ask your doctor or local Aboriginal Medical Service about it. Reduced alcohol consumption, healthy food, regular exercise will help slow the damage to your liver from hepatitis.
Itâ€™s time to learn the facts. Call 1300 437 222 (1300 HEP ABC) The Hep Review Edition 65 June 2009 37 orCvisit www.hepatitisaustralia.com
Grown blood could be circulating in 10 years People with haemophilia who rely on regular transfusions remain cautiously optimistic about news on a cultured-blood substitute, reports Richard Wilson.
or Bruce Norval it is a welcome breakthrough, but one he is nevertheless wary of. He is one of more than 4000 people with haemophilia who contracted hep C through contaminated blood transfusions in the 1970s and 1980s. “It will address a lot of problems,” he says, “but we need to be able to monitor its safety and learn from the mistakes of the past.” The three-year clinical trial into the manufacture of synthetic blood from embryonic stem cells is being led by Professor Marc Turner, the director of the Scottish National Blood Transfusion Service. If successful, scientists believe the blood will be disease-free and provide limitless supplies for transfusions, operations and emergency procedures, reducing the reliance on blood donors.
Similar research work has been carried out elsewhere, but the Scottish team hopes to be the first to apply what works in the laboratory to a clinical environment. Professor Turner hopes that the research will begin in a matter of weeks and will build on the work which has shown that it is possible to encourage an embryonic stem cell to develop into a red blood cell. “The blood is cultured rather than synthesised from scratch. It’s grown from preceding cells,” he says. “So I would describe it as cultured blood, not synthetic blood.” Turner acknowledges the ethical and moral arguments against using embryonic stem cells in medicine, but stresses that the embryos they are using, which are three to five days old, are generated as part of routine IVF treatment and surplus to requirements, so would otherwise be discarded. He is optimistic that the study will prove successful. • Abridged from www.timesonline.co.uk (29 Mar 2009).
Photo by American Red Cross Oregon Trail Chapter via www.flickr.com
But Norval remains wary, his caution informed by his own experiences. He believes he contracted hep C when he was three years old, but the condition remained undiagnosed until he was well into his 20s. His chronic fatigue is so debilitating that he has to sleep in the afternoon to have enough energy to look after his children when they return home from school.
“This whole synthetic blood thing is brilliant. I applaud the effort that’s going into it. I’d hate for it [hep C] to happen to anybody else. Every step is exciting, but the responsibility is upon the scientists to ensure that what they’re doing [is safe].”
How inflammatory disease causes fatigue
Stock photo via www.images.google.com.au
New research looks at why illness involving inflammation can make us feel tired.
ew research in The Journal of Neuroscience may indicate how certain diseases make people feel tired and listless. Although the brain is usually isolated from the immune system, the study suggests that certain behavioural changes suffered by those with chronic inflammatory diseases are caused by the infiltration of immune cells into the brain. The findings suggest possible new treatment avenues to improve peoples’ quality of life. Chronic inflammatory diseases like rheumatoid arthritis, inflammatory bowel disease, psoriasis and liver disease cause “sickness behaviours”, including fatigue, malaise and loss of social interest. The researchers found that in mice with inflamed livers, white blood cells called monocytes infiltrated the brain. These findings support previous research demonstrating the presence of immune cells in the brain following organ inflammation, challenging the long-held belief that the blood–brain barrier prevents immune cells from accessing the brain. “Using an experimental model of liver inflammation, our group has demonstrated for the first time the existence of a novel communication pathway between the inflamed liver and the brain,” said the study’s senior author, Professor Mark Swain of the University of Calgary. Swain and his colleagues found that liver inflammation triggered brain cells called microglia to produce CCL2, a chemical that attracts monocytes. When the researchers blocked CCL2 signalling, monocytes did not enter the brain despite ongoing inflammation in the liver.
the entry of monocytes into the brain reduced sickness behaviours; mice showed more mobility and social interaction. The findings suggest that people with chronic inflammatory diseases may benefit from treatments that limit monocyte access to the brain. “Sickness behaviour significantly impacts quality of life. Our findings further our understanding and may generate potential new avenues for treatment of these often crippling symptoms,” Swain said. “The brain is the master coordinator of many of our bodies’ defence responses, so it must be able to sense injury and inflammation in distant body organs. This study starts to explain the peripheral communication signals that activate the brain,” said Nancy Rothwell, of the University of Manchester, an expert on brain inflammation, who is unaffiliated with the study. • Original article adapted from materials provided by Society for Neuroscience via EurekAlert! Abridged here from www. sciencedaily.com (28 Feb 2009).
In the mice with inflamed livers, preventing The Hep C Review
HELLO HEP C HELPLINE Is it bad for someone with hep C to smoke marijuana? I am also thinking about going onto treatment and I’m worried about having to give it up. These are interesting questions and ones that have come up before on the Helpline. Unfortunately, there is no clear-cut answer on marijuana (cannabis) for people who have hep C or those undergoing treatment. It is also complicated by the fact that cannabis is illegal and some people make moral judgements about its use. There has not been much research into this topic. We tend to tell people about pros and cons and leave it up to them to make their own decisions. Pros A University of California study published in the October 2006 European Journal of Gastroenterology and Hepatology looked at marijuana use during interferon treatment. It involved 71 participants and demonstrated that moderate use may relieve side effects of interferon and therefore assist people to complete the full course of treatment. There was no evidence of a direct antiviral effect and the researchers concluded that the benefit of marijuana was due to improved ability to stay on treatment. A drawback of the study was that it did not look at the relationship between the amount of marijuana consumed and the likelihood of treatment success. For more detail see the article on page 48. Cons Some studies have pointed to negative effects of marijuana for people who have hep C. The first was a French study done in 2004 which looked at daily cannabis use in 270 people whose hep C was untreated. It found that people who used daily were more likely to have severe
liver fibrosis (scarring of liver tissue) and were at a higher risk of rapid fibrosis progression. The authors of the study concluded that people with ongoing chronic hep C should be advised to refrain from regular cannabis use. For more detail, see the article on page 48.
At the 42nd Annual Meeting of the European Association for the Study of the Liver (EASL) in 2007, the same French research team reported on a study linking marijuana use and liver steatosis (fatty liver). For more details, see the article on page 49. Then in 2008 a report published in the January issue of Clinical Gastroenterology and Hepatology once again examined cannabis use. Between 2001 and 2004 researchers from the University of California interviewed 204 people with chronic hep C and concluded that daily cannabis use is strongly associated with moderate to severe liver fibrosis. For more detail, see the article on page 49. From the Helpline perspective, this is obviously an area which requires further research, especially as a wide variety of people use marijuana to relieve either the symptoms of their hep C or the side effects of the treatment. People need to weigh up the benefits against the risks and we are happy to provide relevant research and information for people to make informed choices. As they say, knowledge is power. Note: Please remember, if you do not have internet access Helpline staff are always happy to print and post you any relevant research. Just call us on 9332 1599 (Sydney) or 1800 803 990 (regional NSW). •
Hep C Helpline
‘Hello Hep C Helpline’ is brought to you by the Hep C Helpline team. The questions are based on genuine calls; however, some details have been changed to ensure caller anonymity.
membership matters You are vital to us — we are here for You MEMBERSHIP RENEWAL Have you renewed your membership? If so, many thanks!
our affected communities, so please don’t delay, – renew today.
Our 2009 membership year is already threemonths old and prompt payment of outstanding renewals would be much appreciated. Not everyone wants to be an early bird but, once we pass 1 March, the clock’s ticking.
Hop on to our secure website payment facility at www.hepatitisc.org.au or trust Australia Post to deliver your renewal to: PO Box 432, Darlinghurst NSW 1300.
There is strength in numbers, and every dollar we don’t have to spend on chasing up overdue renewals is a dollar we can spend on services for
A historical perspective Taken from Edition 5, 1993. We now have a fax number. We are also the possessors of a photocopier – a wonderful boon. A new branch is to be formed on the Gold Coast of Queensland. We wish them every success. It has come to notice that Adelaide is receiving quite a few grants from the National Health and Medical Research Council for research into HCV. We have practically no representation in that state and HCV is not a notifiable disease either there or in WA. However, in WA the group is alive and flourishing as witnessed by the very successful workshop held on 17 February. They had approximately 160 health professionals for the day and lectures from specialists in the field from other states. It is intended to hold another workshop later in the year. We hope to be able to publish extracts from the papers in the next newsletter and there is to be a video made of the proceedings. WA has also submitted propositions for funds from various government organisations in that state to help them subsidise their efforts. They have had help from the Drug and Alcohol Authority, the AIDS Bureau, the Addiction Studies Unit of Curtin University and the Palmerston Centre.
As always, professional and organisational members are requested to quote their invoice numbers when paying, to ensure correct payment allocation.
Submissions from the federal group to Canberra under the Community Organisations Support Services are proceeding, though slowly. NSW Health Department has promised the NSW group the use of a counsellor for HCV persons in the Western Sydney Area Health Service. There has been considerable discussion whether the group should be expanded to include all hepatitis sufferers. A great deal of this pressure is coming from gastroenterologists who would like to include all hepatitis. However, the Sydney group has voted to remain as hepatitis C only for the following reasons: 1. The more restricted the area of interest, the more focused the group can be and therefore the more powerful in both educating others and in lobbying for their aims. 2. The issues of transmission and outcome with HCV are already blurred by inadequate knowledge and also so confused with HIV and HBV in the public’s mind, that we need to be really sure about what we do know. 3. Our phone counsellors [volunteers operating out of their own homes] would find it an impossible burden to keep up with all the information on the other hepatitis viruses. 4. The implications of each blood-borne pathogen are quite different and, if ignored, there is no reason why we should not just all come under the umbrella of HIV/AIDS. • Audrey Lamb, Australian Hepatitis C Support Group (HCCNSW), 1993. The Hep C Review
NOW AT RPA HOSPITAL We offer free confidential medical and counselling services: Testing and treatment for STIs (sexually transmissible infections) Hepatitis vaccinations Hepatitis C testing & referral HIV testing and counselling HIV treatment and management Free condoms and lubricant NSP (needle syringe program) Sexual health check-ups Sex worker health checks For appointments and other information, call 9515 3131 or drop in to see our nurses.
Ground Floor, Page Building (Bldg.14), Royal Prince Alfred Hospital, 119-143 Missenden Rd, Camperdown
To organise a time to speak to a volunteer phone
9332 1599 (Sydney) 1800 803 990 (Freecall NSW regional)
legal centre is now able to offer free help with hep C legal issues
HALC is an accredited community legal centre that provides free advocacy and advice. Our solicitors understand the unique legal needs of people living with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and Health Care Complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. When advocating on your behalf we understand the importance of confidentiality and practise discretion.
Paediatric viral hepatitis clinic Hepatitis C virus (HCV) and hepatitis B virus (HBV) occur among children in Australia although exact numbers are unknown. Children with HBV and HCV usually feel well and often are unaware of their infection. The Paediatric Viral Hepatitis Clinic at Westmead provides early diagnosis, monitoring and, in some cases, treatment of children with these infections. Assessment and regular follow up is essential to provide optimal care for children with hep B or C to reduce the risk of significant liver disease in later life.
For more information, contact Janine Sawyer at The Children’s Hospital Westmead (CHW) on 9845 3989 or by email: firstname.lastname@example.org
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
Council keyhole, continued from page 2.
Access All Areas This DVD is for injecting drug users, especially heroin users. It aims to explain drug treatment options as well as the treatment of other drugrelated health problems such as dental care, hepatitis and overdose. To obtain free copies of the DVD, please contact: firstname.lastname@example.org or 1800 020 103 (ext. 8654) or visit www.alcohol.gov.au
community radio across NSW – these were also broadcast in Arabic on the state’s biggest Muslim community radio. Hepatitis Australia, our national peak body, also developed posters, bookmarks, stickers and three 30 second TV community service announcements for national television. The Council took out paid advertising in a wide range of print media in the greater Sydney area and funded a prominent banner advert on the News.com website. Hepatitis Awareness Week 2009 was very successful, with strong partnerships being the key strategy for bringing to the wider public’s attention that fact that 1 in 12 of the world’s population has either chronic hep B or chronic hep C – and that the time for much greater action by governments is NOW. HCCNSW The Hep C Review
y easy read magazine y easy read easy read magazine magazine NEW
edition 1 January 2009
stay tuned for edition 2 coming soon ...
with a new name!
see page 27 for details
To tell us what you think of the mag or to receive a copy of edition 2, contact Scott email@example.com or sms 0404 440 103
come along to our hep c support groups IN 2010
3rd Tuesday of every month
6PM - 8PM
HEPATITIS C COUNCIL LEVEL 1 - 349 CROWN ST
SURRY HILLS *food supplied 44
FIRST GROUP FOR 2010 TUESDAY 16 FEBRUARY for more info
ph: 1800 803 990
research updates Education services for clients of supervised injecting facilities Canada — Unsafe injection practices are prevalent among injecting drug users (IDU) and have resulted in numerous forms of drugrelated harms including HIV/HCV transmission and other bacterial and viral infections. North America’s first supervised injection facility (SIF) was established in Vancouver in order to address injecting-related harms among IDU. This study sought to examine injection drug users’ experiences receiving safer injecting education in the context of a SIF. Semi-structured qualitative interviews were conducted with 50 individuals recruited from a cohort of SIF users. Participant narratives indicate that significant gaps in knowledge regarding safer injecting practices exist among local IDU, and that these knowledge deficits result in unsafe injecting practices and negative health outcomes. However, IDU perspectives reveal that the SIF allows clients to identify and address these gaps in knowledge through a number of mechanisms that are unique to this facility. We conclude that the SIF has been particularly effective in transmitting educational messages targeting unsafe and unhygienic injection practices to a population of active IDU. Consistent with previous work, results of this study indicate that SIFs represent a unique ‘micro-environment’ that can facilitate the reduction of numerous drug related harms. • Fast D, et al. The perspectives of injection drug users regarding safer injecting education delivered through a supervised injecting facility. Harm Reduction Journal 2008, 5:32doi:10.1186/1477-7517-5-32
Prolonged therapy not useful after initial failure USA — In people with advanced chronic hepatitis C who have not responded to prior therapy with peginterferon and ribavirin, prolonged low-dose therapy does not reduce the rate of disease progression, new research shows. Whether extended peginterferon treatment might prevent disease progression was unclear. Dr Adrian Di Bisceglie from Saint Louis University School of Medicine and colleagues note. The Hepatitis C Antiviral Long-Term Treatment against Cirrhosis (HALT-C) trial included 1,050 people who were randomised to receive lowdose peginterferon alfa-2a (90 micrograms a week) or no treatment for 3.5 years after previous non-response to standard peginterferon and ribavirin therapy. The patients were clinically evaluated at three-month intervals and liver biopsies were performed at 1.5 and 3.5 years. Although liver function test levels, HCV RNA levels and histologic necroinflammatory scores fell significantly with peginterferon therapy, disease progression occurred in 34.1% of the treatment group and in 33.8% of the control group. “Long-term maintenance therapy with half-dose peginterferon is ineffective in preventing clinical and histologic disease progression and is not indicated in patients with hepatitis C–associated advanced fibrosis, with or without cirrhosis, who have not had a response to a standard course of peginterferon and ribavirin therapy.” • Di Bisceglie AM, et. al. Prolonged therapy of advanced chronic hepatitis C with low-dose Peginterferon. N Engl J Med 2008;359:2429– 2441.
In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need. Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. They help broaden our overall knowledge and develop consensus opinion on a particular research topic. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). Ed.
The Hep C Review
research updates Adherence to therapy boosts response
Albert Einstein College awarded A$17.8m
USA — High adherence to hepatitis C virus (HCV) therapy prompts significantly better response than does sub–optimal drug exposure, Philadelphia-based researchers report in the January 15 issue of Clinical Infectious Diseases.
USA — For the third time in 14 months the Empire State Stem Cell Board has awarded Albert Einstein College of Medicine at Yeshiva University funding for stem cell research. The new grants, totalling A$17.8 million, will help create technologies able to treat a range of medical conditions including hepatitis.
As lead investigator Dr Vincent Lo Re III told Reuters Health, “We found that adherence of 85% or more to the hepatitis C treatment regimen of PEG-interferon and ribavirin, as measured by pharmacy refill data, was associated with increased hepatitis C viral suppression and early virologic response to treatment.” Dr Lo Re of the University of Pennsylvania School of Medicine in Philadelphia and colleagues studied 188 patients and compared the relationship between drug refills and HCV suppression. At 12 weeks patients with 85% or greater adherence showed a mean decrease in HCV load that was 0.66 log IU/mL greater than was the case in those with lower adherence. In those with high adherence the mean decrease amounted to 1.0 log IU/mL. Early response was also more common in the higher than in the lower adherence group. For pegylated interferon the proportion was 73% versus 29%. For ribavirin the corresponding values were 73% and 55%. The researchers note that the “adherence level to one medication corresponded in most cases to a similar level of adherence to the other medication.” Dr Lo Re concluded that “identifying suboptimal ... adherence to PEG-interferon and/or ribavirin using pharmacy refill data could allow hepatitis C providers to help patients to improve their adherence during treatment, which could help improve response rates.” • Lo Re V, et. al. Adherence to hepatitis C virus therapy and early virologic outcomes. Clin Infect Dis 2009;48:186–193.
In applauding President Obama’s executive order restoring federal funding for stem cell research, Governor David Paterson announced A$142million in new State funding for stem cell research, reinforcing New York’s continued investment and leading role in this rapidly evolving scientific field. The latest round of awards is in addition to A$23million in state funding previously announced. To date, New York State has invested a total of A$165million in funding for stem cell research. An award of A$9.4million will support nine separate research projects, including studies of basic stem cell biology and of potential therapies for obesity, leukaemia, hepatitis and age-related diseases. Jayanta Roy-Chowdhury, professor of medicine, was awarded A$1.5million for amelioration of hepatic metabolic defects by stem cell–derived human hepatocytes. Dr Mukesh Kumar, instructor in medicine, was awarded A$336,000 for manipulation of stem cells for treating viral hepatitis. “We are very pleased to receive these grants from the Empire State Stem Cell Board. It further positions Einstein as part of collaborative efforts across New York State to broaden the understanding of stem cells,” Dr Allen Spiegel, the Marilyn and Stanley M. Katz Dean said. “The funding further enhances our capabilities to gain knowledge that can lead to breakthroughs in medical science that will have important implications for people suffering from many devastating diseases.” • Abridged from www.webwire.com (11 Mar 2009).
research updates Discovery may aid development of new drugs
New studies examine hep B & C elimination
USA — A team from The Scripps Research Institute has found a way to inhibit viral production of the hepatitis C virus (HCV). The advance has the potential to accelerate future research on the virus life cycle and to aid in the development of novel HCV drugs.
Italy — Two new studies in Hepatology explore the ways that HBV and HCV can be cleared.
The research, led by Professor Donny Strosberg, was published on 4 March 2009 in the Journal of General Virology advance, online edition, Papers in Press. In the new study Strosberg and his colleagues describe peptides (molecules of two or more amino acids) derived from the core protein of hepatitis C. The team found that these peptides inhibit not only dimerisation of the core protein (the joining of two identical sub-units), but also production of the actual virus itself. “We went for the simplest solution, taking a peptide from core to see if we could block the interaction,” Strosberg said, “and it did.” “In one sense the ongoing issue with hepatitis C is that there are still so very few drugs to treat the virus and very few tools to study it,” Strosberg said. “We set out to develop new tools and to identify a new target – core, the capsid protein. By targeting the interactions of core with itself or other proteins, we could reduce the problem of rapid mutation in part because the core protein mutates significantly less. Core, the most conserved protein among all HCV genotypes, plays several essential roles in the viral cycle in the host cell; studies have suggested that these core–core or core–other protein interactions can modulate various functions including signalling, apoptosis or programmed cell death, lipid metabolism and gene transcription. • Strosberg D, et.al. Peptide inhibitors of hepatitis C virus core oligomerization and virus production. J Gen Virol. 2009 e-publication, 4 Mar.
The first study sheds light on the immunological response to co-infection with HBV and HCV. Researchers led by Evangelista Sagnelli of Naples, Italy, report that for patients with chronic HCV, HBV superinfection can lead to clearance of the HCV. They compared 29 HCV patients to 29 people, matched by age, gender and risk factors, who did not have HCV. All of the patients developed acute HBV during the same time period. The patients with HCV were more likely to have a severe course of illness, and one died of liver failure. However, nearly one-quarter (six out of 24) emerged HCV-free. “Acute hepatocellular necrosis, although life threatening, may lead to a clearance of chronic HCV infection,” the authors report. “The concern is that this clinical event could become an emerging health care problem in countries with a wide spread of both HBV and HCV infection,” they write. The second study, headed by Maurizia Brunetto of Pisa, Italy, recommends interferon-based therapies as a first-line approach for patients with chronic HBV because these have the best chance of clearing hepatitis B virus surface antigen (HBsAg). The reduction of HBsAg serum levels leading to HBsAg clearance is the hallmark of a newly achieved immune control of the infection by means of a significant reduction of virusinfected hepatocytes. “Significantly more patients treated with peginterferon alfa-2a (21%) or peginterferon alfa-2a plus lamivudine (17%) achieved HBsAg levels under 100 IU/mL at the end of treatment compared with lamivudine (1%),” they report. • Sagnelli E, et al. HBV superinfection in HCV chronic carriers: A disease that is frequently severe but associated with the eradication of HCV. Hepatology. 2009;49(4):1090–1097. Brunetto MR, et.al. Hepatitis B virus surface antigen levels: a guide to sustained response to peginterferon alfa-2a in HBeAgnegative chronic hepatitis B. Hepatology 2009;49(4):1141–1150.
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research updates Cannabis and hep C treatment
Cannabis smoking as a risk factor for fibrosis
USA — Despite the widespread use of polypharmacy, the management of hepatitis C treatment–related side-effects is often incomplete, and many patients turn to cannabis for symptom relief. Unfortunately, there are few data about cannabis use on treatment outcomes, leaving clinicians without the data needed to inform recommendations.
France — Cannabinoids present in marijuana exert biological effects via cannabinoid receptors CB1 and CB2. A study recently demonstrated that CB1 and CB2 receptors regulate progression of experimental liver fibrosis.
To define the impact of cannabis use during HCV treatment, we conducted a prospective observational study of standard interferon and ribavirin treatment in 71 recovering substance users, of whom 22 (31%) used cannabis and 49 (69%) did not. Seventeen of the 71 study patients (24%) discontinued therapy early; one cannabis user (5%) and 16 non-users (33%). Overall, 37 patients (52%) were end-of-treatment responders; 14 (64%) cannabis users and 23 (47%) non-users. A total of 21 out of 71 (30%) had a sustained virological response: 12 of the 22 cannabis users (54%) and nine of the 49 non-users (18%), corresponding to a post-treatment virological relapse rate of 14% in the cannabis users and 61% in the non-users. Overall, 48 (68%) were adherent, 29 (59%) nonusers and 19 (86%) cannabis users. Although cannabis users were no more likely than nonusers to take at least 80% of the prescribed interferon or ribavirin, they were significantly more likely to remain on HCV treatment for at least 80% of the projected treatment duration (95% versus 67%). Our results suggest that modest cannabis use may offer symptomatic and virological benefit to some patients undergoing HCV treatment by helping them maintain adherence to the challenging medication regimen. • Sylvestre DL, et al. Cannabis use improves retention and virological outcomes in patients treated for hepatitis C. Eur J Gastroenterol Hepatol. 2006;18(10):1057–1063.
Researchers investigated the impact of cannabis smoking on fibrosis progression rate in patients with chronic hepatitis C (CHC). They studied 270 untreated patients with CHC of known duration undergoing liver biopsy. Demographic, epidemiological, metabolic and virological data were recorded, and detailed histories of cannabis, alcohol and tobacco use over their span of infection were obtained. Patients were categorised as non–cannabis users (52.2%), occasional users (14.8%) or daily users (33.0%), and the relationship between cannabis use and fibrosis progression rate (FPR) or fibrosis stage was assessed. Six factors were independently related to a raised FPR: daily cannabis use, Metavir activity grade A2 or higher, age at infection of more than 40 years, genotype 3, excessive alcohol intake and steatosis. Daily cannabis use was also an independent predictor of a rapid FPR. Finally, severe fibrosis (> or =F3) was also predicted by daily cannabis use, independently of Metavir activity grade, excessive alcohol intake, age at liver biopsy, steatosis and tobacco smoking. In conclusion, daily cannabis smoking is significantly associated with fibrosis progression during CHC. Patients with ongoing CHC should be advised to refrain from regular cannabis use. • Hézode C, et al. Daily cannabis smoking as a risk factor for progression of fibrosis in chronic hepatitis C. Hepatology 2005;42(1):63–71. Please contact the Helpline if you want further information about the above biospy scoring. See page 3. Ed.
research updates Cannabis and fatty liver France — Steatosis (fatty liver) is highly prevalent in people with chronic hepatitis C (CHC) and has been reported to increase fibrosis and reduce the rate of viral eradication. Two recent studies indicate that endocannabinoids promote experimental steatosis via activation of hepatic CB1 receptors. Researchers investigated the impact of cannabis smoking on steatosis severity during CHC. They studied three hundred and fifteen patients with untreated CHC undergoing liver biopsy. Detailed histories of recent cannabis, alcohol and tobacco use were recorded. Steatosis, activity and fibrosis stage were assessed by two pathologists according to the Metavir score. Patients were categorised as cannabis non-users (63.5%), occasional cannabis smokers (12.4%) or daily cannabis smokers (24.1%). Six predictors of marked steatosis were identified: daily cannabis use, activity grade >/=A2, genotype 3, hyperglycaemia or diabetes, body mass index >27 kg/m2 and serum HCV RNA load. Upon adjustment of HCV genotype (3 vs non-3) or alcohol intake (<30 g/day vs >30 g/ day), marked steatosis was more frequent in daily cannabis users compared with occasional users and non-users. The results identify daily cannabis smoking as a novel independent predictor of steatosis severity during CHC and strongly argue for a steatogenic role of the cannabinoid system. Cannabis use should be discouraged in patients with CHC. • Hézode C, et al. Daily cannabis use: a novel risk factor of steatosis severity in patients with chronic hepatitis C. Gastroenterology, 2008;134(2):432–439. Please contact the Helpline if you want further information about the above biospy scoring. See page 3. Ed.
Cannabis associated with worse fibrosis USA — Daily marijuana use may contribute to the progression of liver fibrosis in people with chronic hepatitis C, according to a report published in Clinical Gastroenterology and Hepatology. Researchers from the University of California interviewed 204 patients with chronic hep C between 2001 and 2004, assessing demographic characteristics, HCV risk factors and use of cannabis and alcohol. Participants underwent virological testing and liver biopsies. The median age of the study participants was 47 years, 69% were men, 49% were white, most were low income and for 70% the presumed route of HCV infection was injecting drug use. Daily cannabis use was not strongly associated with mild (F1-F2) fibrosis compared with absent (F0) fibrosis. However it was strongly associated with moderate to severe (F3-F6) fibrosis. Age, sex, race, duration of HCV infection, HCV genotype, HIV status, body weight, tobacco use and lifetime alcohol use were not significantly associated with mild fibrosis. In conclusion, the researchers wrote, “Daily cannabis use is strongly associated with moderate to severe fibrosis,” recommending that “HCVinfected individuals should be counselled to reduce or abstain from cannabis use.” This data supports previous studies showing that frequent cannabis use is associated with more severe fibrosis, faster fibrosis progression and advanced liver steatosis (fat accumulation). While long-term frequent cannabis use may be detrimental to people with chronic hep C, other research has shown that medicinal use of cannabis during interferon-based therapy can relieve side effects and help patients stay on treatment, thereby improving their chances of sustained response. • Ishida JH, et al. Influence of cannabis use on severity of hepatitis C disease. Clinical Gastroenterology & Hepatology 2008;6(1): 69–75. Please contact the Helpline if you want further information about the above biospy scoring. See page 3. Ed. The Hep C Review
research updates Tiny chemo beads boost liver cancer outcomes
Hep C transmission not reduced by C-sections
USA and Italy — A minimally invasive therapy that uses beads soaked with anti-cancer agents has been successful at halting liver tumours, according to new studies. Transarterial chemoembolisation (TACE) attacks liver tumours on two fronts. Microspheres, or beads, combined with cancer-killing chemotherapeutic agents are delivered to the blood vessel feeding the tumour. While the chemo attacks the cancer, the microspheres get stuck in the vessels and choke off the blood supply to the tumour – a process called embolisation.
Ireland — Planned caesarean sections do not help to reduce the chances of a pregnant woman with hep C transmitting the infection to her unborn baby, according to new scientific findings by the National Maternity Hospital in Dublin and University College Dublin.
TACE holds promise because the tumour, rather than the entire body, receives the chemotherapy directly. It is used to slow, not cure, the disease, but successful improvements in the beads and the procedure were expected to be shown in papers presented at the annual International Symposium on Endovascular Therapy (ISET). In the first study, at St. Joseph’s Hospital and Medical Centre in Tampa, Florida, 10 of 11 liver cancer patients given beads that released the chemo drug doxorubicin were alive two years after the procedure. Ten of the 13 patients who had colorectal cancer that spread to the liver and were given the same treatment were also alive after two years. An Italian study showed positive results with HepaSphere beads, which expand once stuck in the vessels to better block blood flow while also delivering chemo agents directly into the tumour. More than 86% of the 53 liver cancer patients in that trial showed a complete response to the therapy after six months. Even without chemotherapy added to the beads, the embolisation technique showed promise in a different Italian study. About half of 34 primary liver tumours shrank within one month in patients given non-chemo Embozene microspheres alone. The other half showed no signs of tumour growth. • Abridged from HealthDay News (20 Jan 2009). For further information on the above presentations visit http://www.iset.org/
Hepatitis C is a viral infection of the liver which is mainly transmitted through contact with contaminated blood or blood products. Infant infection rates are also linked to the number of mothers infected with the viral infection and the risk factors associated with the transmission of the infection to their unborn children in the womb. The results of a new five-year study of 559 mother–child pairs in Ireland, one of the largest such studies of its kind, published in the American Journal of Obstetrics & Gynaecology, show that vaginal delivery and planned caesarean among pregnant women infected with hep C display almost equal transmission rates of hep C from mother to child (4.2% and 3% respectively). “The mode of delivery itself was not shown to have a significant influence on the transmission rate of hep C from mother to child,” says Professor Fionnuala McAuliffe from the National Maternity Hospital in Dublin and the School of Medicine and Medical Science at University College Dublin, one of the authors of the report. “The main risk factor associated with the vertical transmission of hep C was the presence of detectable hep C virus in the mother’s bloodstream.” “According to these new findings, if the hep C virus is undetectable antenatally despite the mother being antibody positive, the patient can be reassured that the risk of vertical transmission to their child is minimal, and this is a significant development for patient counselling.” • McMenamin MB, et al. Obstetric management of hepatitis C–positive mothers: analysis of vertical transmission in 559 mother-infant pairs. American Journal of Obstetrics & Gynecology 2008;199(3):315
research updates Interventions to reduce transmission of blood borne viruses related to injecting drug use in prisons Canada — A comprehensive literature review has examined the use of, and evidence for, various harm-reduction interventions to reduce the transmission of HIV through injecting drug use in prison settings. Harm reduction in prisons has always been a controversial area of work, with many policymakers reluctant to be seen as acknowledging the existence of drug use in prisons. However, as the review notes, “Existing data show that injecting drug use is a reality in many prison systems and that most incarcerated injecting drug users (IDUs) share injecting equipment. This creates environments that promote the transmission of blood-borne infections among prisoners.” Prisons, therefore, are a crucial risk environment that must be targeted in order to achieve universal access to HIV prevention, especially given that the size of the global incarcerated population is increasing. The paper is part of a broader review program of prison interventions – commissioned by the World Health Organization, the United Nations Office on Drugs and Crime and UNAIDS – to “guide countries in their efforts to scale up towards universal access to HIV prevention, treatment, care and support by 2010”. As well as looking at data on drug use, injecting and HIV and HCV transmission in prisons, the paper examines the evidence base for the following harm reduction interventions: Needle and Syringe Programs (NSP) Prison NSP schemes were found to exist in over 50 prisons in 12 different countries. The overwhelming evidence from these programs was that NSPs in prisons helped to reduce (or even prevent) the sharing of injecting equipment, and to prevent new cases of injecting-related HIV in prisons. There was also evidence that these interventions helped to reduce overdoses, engage drug-using prisoners into health services, increase the awareness of risks and increase staff safety. Crucially, there was no evidence to support some of the common objections to NSP in prisons – there was no recorded incidence of syringes being used as weapons in prisons, and no reported increases in injecting drug use
or the amount of drugs in prisons. The authors also noted that “Once in place, the acceptance of NSPs is generally high among staff and prisoners.” Opioid Substitution Therapies (OST) The provision of OST – usually in the form of methadone maintenance treatments – is much more common in prisons than NSP. Again, however, the evidence was very positive in favour of these interventions – especially when they were provided to prisoners in sufficiently high doses and for a suitably long duration of time. OST in prisons was associated with reductions in injecting, drug-seeking behaviours, HCV infection and mortality, as well as positive impacts on criminal recidivism, re-incarceration, and entry into post-release treatment. Bleach and decontamination strategies Many prison services are reluctant to provide NSP interventions due to unfounded fears about safety and drug use, and instead provide bleach kits to disinfect and clean used injecting equipment. However, the research indicates that these interventions are “not supported by evidence” and that they “cannot replace NSPs” in terms of preventing HIV transmission in prisons. Overall, the review outlines the clear evidence in support of harm-reduction interventions in prisons, and – in the absence of randomised clinical trials which are unethical in these settings – provides the strongest available scientific support for this approach. As the authors note, “The rationale for establishing NSPs in prisons where injecting drug use takes place is even stronger than in the community”, and the same could be said about OST. Yet many countries do not have services or health care for prisoners that match those outside of these settings, presenting a huge challenge for advocates of harm reduction and for universal access to HIV prevention, treatment and care. • Jürgens R, et al. Interventions to reduce HIV transmission related to injecting drug use in prisons. The Lancet Infectious Diseases 2009; 9(1):57–66.
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research updates The effect of acupuncture on people with hep C Australia — The use of complementary and alternative medicine (CAM) in Australia has been steadily increasing. This has resulted in many people with hepatitis C virus (HCV) consulting CAM practitioners in the hope of alleviating some of the debilitating symptoms associated with this viral infection. A pilot study was initiated at the University of Technology, Sydney to evaluate whether acupuncture has an effect on people with HCV. Acupuncture, which is part of traditional Chinese medicine (TCM), evolved outside the Western medical model and has its own unique system of diagnosis and disease identification. TCM practitioners evaluate each person’s symptoms and physical presentation. Often individuals who share a Western diagnosis (e.g. chronic hepatitis C) will be characterised by a variety of patterns of disharmony (symptom clusters). In addition to being used as a diagnostic tool, pattern identification also guides the practitioner towards the treatment selection of specific acupoints or a herbal formula. Acupuncture is an ancient, gentle, drug-free holistic therapy. Over 2,000 years ago Chinese medical writings described acupuncture channels which transport energy around the body. This energy, called qi (pronounced “chee”), can be influenced at special locations, known as acupoints, which lie along these channels. Gentle stimulation of precise acupoints, when applied on the basis of correct diagnosis, will aid the body’s own defence and self-healing systems, thus promoting and maintaining good health. People are treated as a whole, with the purpose to provide relief of symptoms and reduction of their condition. For the trial, 16 participants, all of whom met specific eligibility criteria were recruited and randomised into two groups. One group received traditional Chinese acupuncture and the other group (control group) received sham acupuncture (shallow needling at non-acupoint sites).
Each trial participant was categorised according to the TCM framework. One participant withdrew from the trial after the eighth treatment due to work commitments. A total of seven participants in the treatment group and eight in the control group completed 24 treatments administered over a 12-week period. The outcomes measured were: alanine aminotransferase (ALT) tests, HCV viral load, the Hepatitis Quality of Life Questionnaire (HQLQ) and a TCM Pattern Differentiation/ Outcome Analysis. Acupoint protocol for the treatment group was based on the three most strongly expressed patterns for each participant. Each pattern was treated on a weekly rotation with equal numbers of treatments given for each pattern (eight treatments). Following the intervention each participant’s symptoms and signs were reassessed to monitor any changes in pattern identification. There were eight men (56.3%) – 5 treatment group, 3 control group – and seven women (43.7%) – 2 treatment group, 5 control group – who completed the study. The average age of the treatment group was 51 years; and the control group, 46 years. Seven people had previously undertaken combination therapy (5 treatment group, 2 control group) and eight participants advised that they consumed alcohol (5 treatment group, 3 control group). At the commencement of treatment (baseline), although the group placements were randomly allocated, all measures showed that the treatment group was not as healthy as the control group. The entry criteria specified that all participants must have had an elevated ALT above 57 U/L during the previous six months; however, five participants, when tested at the commencement of the trial, were below this measure. At the commencement of the trial each participant’s symptoms were systematically evaluated against 99 symptoms (17 TCM patterns). The major symptoms expressed by participants included: fatigue (14 participants); dryness of eyes, nails, throat and mouth (13); irritability or anxiety (12); insomnia or dreamy sleep (12); ringing in the ears (11); muscle spasms (10); tired and sore lower back, legs and knees (10); reddish cheeks and eyes (10); flatulence or
research updates C: a randomised controlled pilot study. bloating (10); frequent sighing (10); and weakness of spirit (10). Another 80 symptoms were reported by participants, which included eye strain and spots in vision (8), teeth grinding (7), urgency to urinate (8), tendency to sweat easily (7) and borborygmos bowel rumbling (7). During the treatment period three participants admitted to drinking over the alcohol allowance (2 treatment group, 1 control group) and one became pregnant – ALTs generally normalise during pregnancy – (control group). While there were improvements in pathology for certain individuals in the treatment group, overall outcomes showed that there was no significant difference or improvement between the two experimental groups for ALT levels, viral load or any domains of the HQLQ.
TCM patterns, and therefore symptoms, before and after the intervention phase. This process attempted to accommodate TCM practice within the framework of rigorous evidence-based medical research while providing a standardised, reproducible, individually tailored treatment protocol. In conclusion, this small pilot study showed that acupuncture treatment applied over a twelve-week period did improve the symptoms associated with the participants in this trial. Due to time constraints there was no opportunity for follow-up pattern evaluation to determine whether symptom improvements were sustained. • Christine Berle, DipAc., MSc.(Research)
There was, however, a significant decrease in pattern expression at week 12 compared to baseline for the secondary (56.3% decreased to 47.5%) and tertiary patterns (48.1% decreased to 33.6%) of the treatment group. No significant change in expression was found for the primary, secondary or tertiary patterns for the control group or for the primary patterns associated with the treatment group. A closer examination of symptoms associated with the improved patterns revealed that the major symptom which responded to acupuncture treatment was nausea, followed by dryness of eyes, dryness of throat and mouth, low grade fever, ringing in the ears and headaches.
Stock photo via www.images.google.com.au
Control group participants were offered 24 real acupuncture treatments upon completion of the trial. All participants accepted this offer; however, all chose to spread their treatments over a sixmonth period, with two treatments per week for the first month, then one weekly for two months and then one fortnightly for three months. Although data was not collected as part of the study, individuals reported health benefits. This small pilot study is the first to evaluate the effects of acupuncture on people with HCV. The TCM pattern-identification process used in this study allowed the systematic assessment and measurement of the
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interferon-based therapy Interferon-based therapy Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily. Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive). Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective
forms of contraception (one for each person). Female partners of men undergoing treatment must not be pregnant. Age: People must be aged 18 years or older. Treatment history: There are two brands of therapy. With one brand, people must not have had prior interferon or peginterferon treatment. With the other brand, people can access re-treatment (phone the Helpline for more info on this). Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests
must be performed at the same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment.
CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peginterferon alfa-2b if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
complementary medicine Note that some people with genotype 2 or 3 may still require biopsy to determine whether they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring. See “Monitoring Points”, page 54. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access interferon-based therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see page 56). NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Treatment centres exist in most parts of New South Wales. Phone the Hep C Helpline for the contact details of your nearest centre. In New South Wales Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • HCCNSW (above info is reviewed by the Department of Health and Ageing prior to publication).
Complementary medicine Good results have been reported by some people using complementary therapies, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (Edition 24, page 8). A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (Edition 45, page 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hep C? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hep C? • What are the side effects? • Are they a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hep C. Additionally, they should be members of a relevant professional association. Phone the Hep C Helpline (see page 56) for more information and the contact details of relevant professional associations. • HCCNSW
Hep C Review Edition ED6465 March TheThe Hep C Review June 2009
support and information services NSW Hep C Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hep C Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers) Hep C Council NSW support group A chance for people living with hep C to meet others and get some support. We meet on the 3rd Tuesday of each month, from 6–8 pm at the Hepatitis C Council, Level 1, 349 Crown Street (corner of Crown and Albion Sts), Surry Hills. Food and drink provided. For more information please call the Hep C Helpline on 1800 803 990. Prisons Hep C Helpline A special phone service provided by the NSW Hep C Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the healthcare system. The NSW Hep C Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peer-based 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) for advice and details about your nearest clinic. Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics Although hep C is not classified as a sexually transmissible infection, these clinics offer confidential pre- and post-test discussions and HCV blood tests. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres Community health and neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community health centres. Neighbourhood centres can be found by contacting your local council. Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English and for more details about MHAHS, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hep C Helpline distributes some information resources in various languages.
support and information services 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: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints; and the appointment of attorneys and guardians. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who are affected by hep C and have been through treatment. This is a free and confidential phone-based service which anyone in NSW can access. To speak to a volunteer please phone 9332 1599 or 1800 803 990 (free call from regional NSW). Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning 10.30–11 am, (Eastern Standard Time). Go to 3CR’s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Hunter hep C support services A service for 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 information please contact Carla Silva on 4922 3429 or Tracey Jones on 4921 4789.
Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information please contact Vince on 4734 3466. Northern Rivers liver clinic support group An opportunity for people contemplating treatment, undergoing treatment, and for those who have completed treatment to get know each other. For more information please phone 6620 7539. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For information please contact Lynelle Wood on 0418 116 749 or Jana Vanderjaght on 0418 207 939. Parramatta support group A support group for people living with hep C, including those in treatment. From 7 pm to 8.30 pm, first Thursday of every month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 162 Marsden St, Parramatta. There is no parking on site. It is a 10-minute walk from Parramatta station. For information please contact Susan on 9845 5627. Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. It offers free and confidential services to affected people and their families and carers. For more information contact Traids on 9843 3143. Westmead hep C information night Our information nights are organised for people with hep C, families, friends and interested others. Parking is available at the hospital but you will need $6 in coins. Alternatively, it is about a ten-minute walk from Westmead station. Go to the main entrance of the hospital and ask for directions at reception, or look for our signs. There is no charge for the information night and people from any area are most welcome. For information please contact Susan on 9845 5627.
The Hep C Review
noticeboard Our loan library Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require. Items are loaned free of charge but you need to pay return postage.
Upcoming events Supportive drop-in evenings, 16 June, 21 July and 18 August, Council office, 349 Crown St, Surry Hills.
Videos and DVDs
Everybody’s Business (MHAHS/ANCAHRD, 2004): Covers hep C and HIV. Suitable for health workers working with groups. Comes with a facilitator’s workbook. Available in English, Khmer, Somali, Indonesian and Thai. Look Back Look Forward (Kathy Sport/Ronin Films, 1998): 30 minute video with real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers. English. Members only. Books Hepatitis C: an Australian perspective (Crofts, Dore, Locarnini, 2001) Covers all aspects of hep C clinical management, treatment and prognosis. Suitable for health workers. Members only. Hepatitis C, other liver disorders and liver health: a practical guide (Farrell, 2002): Covers all aspects of hep C management, treatment and lifestyle issues, as well as other liver disorders. Suitable for individuals and health workers. Members only. •
Complaints If you wish to make a complaint about our products or services, please visit our website for more information: www.hepatitisc.org. au/hepcouncil/disputes_policy.pdf Or see page 3 for our phone number and postal address.
Please phone the Hep C Helpline for more information about these events (see page 3). If you want your event featured here, please contact the editor (see page 3).
Want to help your Council? We are a membership organisation and are governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hepatitis C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • providing content for the Council‘s magazines, The Hep C Review and Transmission • proofreading and subediting for The Hep C Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker • board of governance work Want to find out more? Please phone the Hep C Helpline for more information.
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The Big Combo (HCCNSW, 2002) 20 minute DVD featuring two people who approach treatment for hep C in very different ways. Includes information on treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English.
membership form / renewal / tax invoice An invitation to join or rejoin the Council 1. Please complete A or B or C, then complete other side
A. For people affected by HCV, or other interested people
Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: (02) 9332 1730
P ostal address
About the Council
S uburb/ town
We are a community-based, non-government membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hep C in New South Wales.
The Council is overseen by a voluntary board of governance primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.
The Hepatitis C Council of NSW respects and upholds your right to privacy protection. In accordance with the National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information. For a copy of the policy please contact the Council office on (02) 9332 1853 (Sydney callers) or 1800 803 990 (NSW regional callers), or visit our website: www.hepatitisc. org.au
Membership Our membership year begins on 1 March and runs to the end of February the following year. All members (including zero fee members) must renew their memberships on an annual basis. Membership income assists the Council greatly in its work throughout the year.
New South Wales health care workers One of our services is the NSW Hep C Helpline, an information and support phone line that is able to refer callers to a range of services and health care workers in their local area (within New South Wales only). If you would like to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular HCV update information. Please note that we encourage services on our referral database to become members of the Council. As the most widely read hep C publication in New South Wales, targeting both people affected by hep C and healthcare workers, The Hep C Review is provided free to all members of the Council.
B. For individual healthcare or related professionals
Ma y we li st yo u o n o ur re fe rra l d a ta base ? Free copies of The Hep C Review required
2 5 10 20 50 80 160
C. For agencies, organisations and companies Name of agency Contact person Position Postal address
May we list you on our referral database? Free copies of The Hep C Review required
In New South Wales, if your service has clients/patients who may be interested in The Hep C Review, please indicate the number of extra copies you would like to receive on this form.
The Hep C Review
2 5 10 20 50 80 160
membership form / renewal / tax invoice 2. Are you a new or existing member ? This is the first time I've applied to become a financial member
5. Separate donations are gratefully accepted by the Council. Donations of $2 and over are tax deductible. If you would like to make a separate donation, please record the amount here:
I'm already a financial member and this is a membership renewal
6. If paying by credit card, please provide all information in this section.
I currently receive your magazine and I want to become a financial member
I'm not sure - please check your database 3. Our membership year begins on 1 March and finishes on the last day of February. To become a financial member, please tick one membership fee box, below:
Card type :
E xp i ry date:
Waged : for people in paid employment
Concession: for people on government benefits
Zero Fee membership: for people in NSW experiencing severe financial hardship (e g . NSW prison inmates)
Individual health or allied professionals
7. Payment, GST and postage instructions
Community-based agency (Management Committee run)
All Council membership fees are GST exempt but for most people, our membership fees are not tax deductible.
Public/private sector agency
If paying by cheque or money order, please make payments out to: Hepatitis C Council of NSW - Membership
P lease print cardholder name:
NB: Above are Australian rates only. Overseas applicants please contact the office or consult our website for additional surcharge information.
Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285
4 . C o n ta c t w ith th e C o u n c il o ffic e . We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office. I'd like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work for the Council
8. Would you like us to post you a receipt? If you would like a receipt for your payment, please tick the box (right)