HEP REVIEW Edition 82
DEC 2013
SUMMER
Hep C activists march on WHO
Adrian Rigg paints the scene and explains the issues.
You got a friend: Hep C Australasia
For a decade, this online forum has provided a lifeline to thousands.
More than 5mill Australians now have high cholesterol Read why this worrying news relates to you. Read how you can avoid the risks!
HEPATITIS NSW – working towa
Hep Review magazine Edition 82 rds a wo rld free of viral hepatitis
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hep c activists MARCH ON WORLD HEALTH ORGANIZATION World Hepatitis Day is held each July to raise awareness of hepatitis, encourage people at risk to be tested, highlight the need for prevention and treatment, and to present hepatitis as a health condition without any stigma. While many health and community organisations hold awareness-raising activities, this year some community groups in New York literally took to the streets.
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OCAL-NY (Voices of Community Activists and Leaders New York) is an organisation made up of, and representing, lower income people affected by HIV/AIDS, hepatitis, incarceration and homelessness, and people who use drugs. They protested outside the World Health Organization (WHO), the health authority of the United Nations, in New York and blocked traffic on a major street. The focus of the protest was the urgent need for action on hepatitis C worldwide; protesters carried hundreds of balloons with the slogan “Hep C time bomb”. The protest was conceived when VOCAL-NY attempted to deliver a petition of demands signed by people from around the world to coincide with World Hepatitis Day, but no one from the WHO would come to receive it from them. They decided on direct action as the best way to get their message across. “As soon as WHO heard of our plans for a New York action, they called me to see what more they needed to be doing,” says Karyn Kaplan, Director, International Hepatitis/HIV Policy and Advocacy at Treatment Action Group (TAG), an independent AIDS research and policy think tank in New York.
Photo by VOCAL-NY via flickr.com
“This immediate response, from the head of the WHO HIV department, is exactly the kind of outcome these actions are intended to provoke.”
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The organisers scouted the site and called as many supporters as they could multiple times to get people to commit to coming; they met a few days before the protest to plan the details. About 25 loud and determined people spent 10 minutes in the lobby of the WHO office before moving out to the street and stopping the traffic. Matt Curtis from VOCAL-NY, says “This was definitely a high energy action, fairly angry in tone.”
feature Although they were a small group, they were very effective in their presence. “We blocked traffic and read international and New York personal stories out over our bullhorn and talked to passers-by, which worked unusually effectively,” says Matt. “When the police got there about 20 minutes later, they had to do so on foot because they couldn’t drive up closer than several blocks away – the traffic was blocked for two miles up Second Ave.” The organisers negotiated with police for a couple of minutes and then moved off the road onto the footpath to avoid being arrested. They spent another 20 minutes reading out testimonials and chanting, which continued to attract attention from people on the street and in surrounding office buildings. The entire protest lasted about an hour – a very effective high-energy, attentiongetting action.
“Specifically, hepatitis C treatment activists in low- and middle-income countries, and their allies in rich countries, are looking to WHO for leadership on hepatitis C at a scale that reflects the enormity of the epidemic - globally, there are six times the number of people with hepatitis C as people with HIV/AIDS,” says Karyn. “The gap between those who can access tests and treatment for hepatitis C is only getting wider as newer, more effective, but more expensive drugs are coming out.” These groups are not targeting just the WHO, nor holding the WHO solely responsible for action on hepatitis worldwide. “We are also in communication with WHO as to how best to communicate with the broadest number of civil society representatives in a transparent and constructive manner so we can feed into their strategy and support their countrylevel efforts on the ground in all the countries where our activists work,” says Karyn, to
Photo by VOCAL-NY via flickr.com
TAG and VOCAL-NY say that WHO is not doing enough to increase access to hep C testing and treatment around the world. The groups are in contact with many key people in the WHO, but this action was intended to get the attention of the Director of WHO, Margaret Chan. They are calling upon her to promote harm reduction services actively, such as needle exchange programs; help
make it possible for the development of generic treatments so that governments can afford to include them in their national health plans; and create clear guidance for testing, with screening recommended for people with HIV and people who inject drugs.
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Image by Nicolas Raymond, via http://freestock.ca/flags_maps_g80-world_grunge_map_p1728.html
demonstrate how they are working with the WHO to further their common aims around the world. The World Health Organization’s aims The WHO states that it is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidencebased policy options, providing technical support to countries and monitoring and assessing health trends. One of its major aims is promoting development: striving to allow access to health care for all people, and breaking down the traditional boundaries of economic and social disadvantage. The WHO also states that it aims to provide assistance to countries in order to improve the health of their populations. This year, the WHO reported on a survey of Member States about their hepatitis prevention and control activities. They also asked these countries to name the areas in which they would like assistance from the WHO. The primary areas were as follows, firstly, developing a national plan for viral hepatitis prevention and control; secondly, estimating the national burden of viral hepatitis; and thirdly, developing education/training programs for health professionals. The survey also highlights the need for organisations at all levels – local, national and international – to coordinate so that the best and most efficient actions are taken. The WHO has the responsibility of a lead role in this.
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The World Health Assembly The World Health Assembly (WHA) is the decision making body of the WHO; delegations from all WHO member states attend the annual meeting. In 2010, the WHA recognised viral hepatitis as a global public health problem. They recommended that the WHO creates and implements plans for governments and populations to help prevent and treat viral hepatitis worldwide. The Global Hepatitis Programme has three main goals, namely to reduce transmission of viral hepatitis; improve the care of people with viral hepatitis to improve the health of people and reduce mortality rates; and reduce the socio-economic impact on individuals, communities and countries. Fighting hepatitis worldwide Awareness of hepatitis and access to testing are key aspects, as most people worldwide with viral hepatitis don’t know they have it. This means that they don’t seek treatment and that they can transmit it to others unknowingly. To put the effects of viral hepatitis into perspective, the WHO reports that in 2010, viral hepatitis caused 1.4 million deaths worldwide; in the same year malaria caused 660,000 deaths and in 2011, 1.4 million died from tuberculosis and 1.7 million from HIV/AIDS. These other illnesses have had higher profiles and greater responses, for example, through The Global Fund to Fight AIDS, Tuberculosis and Malaria, which provides funding to countries to support programs fighting these diseases. Viral hepatitis could arguably be controlled more effectively through wider prevention, diagnosis and treatment.
Viral hepatitis has not been highlighted as a major health issue around the world as it may be many years before a person develops health problems. It is only in recent decades that the impact of long-term liver damage has been seen as a result of viral hepatitis. Additionally, there are many public health areas involved, including vaccination, blood and needle safety and cancer. It can take years to develop and implement public health policies, and decades to see any positive impact. It is now known that there are many relatively inexpensive ways to prevent viral hepatitis, such as needle and syringe programs, vaccination against hepatitis B, safe blood supplies and public education. The World Hepatitis Alliance The World Hepatitis Alliance is a not-forprofit body with members representing 150 organisations from around the world. It helped make World Hepatitis Day internationally recognised by convincing the WHO and participating countries that hepatitis was a major problem with relatively little awareness that warranted an official day of action. Since its formation in 2007, the World Hepatitis Alliance has striven to get the WHO to take more action on hepatitis; and progress is being made. “Since the World Hepatitis Alliance was first formed it has worked exceptionally hard to get the WHO involved in viral hepatitis,” says Helen Tyrrell, CEO of Hepatitis Australia and a founding Board Member of World Hepatitis Alliance.
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“Whilst the WHO bureaucratic processes can be frustratingly slow, without their support we simply wouldn’t be where we are today – which is definitely in a better place than five years ago,” says Helen.
The WHO has recently included pegylated interferon on its Model Lists of Essential Medicines. The list names medicines which should be available in functioning health systems in sufficient quantities and at an affordable cost for individuals and communities. Inclusion is important as it demonstrates the significance of hep C treatment to populations, as well as encouraging countries with no access to make it available. The World Hepatitis Alliance, VOCALNY and TAG, among many others, have long advocated for inclusion of pegylated interferon on the list. Positive change usually comes from the top, but it is often influenced or driven from grass roots levels. Of course, outcomes in individual countries depend on the positive action taken, and no amount of policy drafting can have any impact unless the policy is effectively implemented. For health policies to have positive outcomes there must be adequate funding and resources for planning and implementation, and strong political support. When these factors align, real progress can be made. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com.au
Hep Review magazine
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December 2013
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editor’s intro
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H
CHAMPIONS UNITE
I hope you’ll enjoy our two feature articles: the rally that marched on the World Health Organization offices in New York, and the online forum Hep C Australasia. These are stories that come from opposite sides of the world but are both about communities working to look out for each other.
Want to find out the latest about hep C treatment, advocacy, harm minimisation, education, patient services and resources?
In New York we have community activisits marching to ensure that on World Hepatitis Day their hep C message is heard loud and clear: we need better leadership on hep C testing, treatment and anti-stigma action.
Delivered to your email inbox once a month, The Champion is a great way to stay up to date on hep C related events and developments across NSW.
i everyone and welcome to our Summer edition of Hep Review magazine.
In Australia and New Zealand we have a community who have joined together to provide online support and understanding for people affected by hep C. They are both really good examples of what people can achieve, working together. Don’t forget our invitation for you to get more involved in Hep Review magazine. Phone, email or send us your ideas for feature articles. Tell us your story, send us your photograph, fill in the reader survey or write in with a letter. We want to hear your voice in Hep Review.
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Share your views: if you sign up as a subscriber, you can even submit your own articles for publication! • To subscribe, just send an email to campaigns@ hep.org.au with your name.
ED81 readership survey winner We’d like to congratulate Micha – from Northern NSW – who was the lucky winner of a $50 gift card. Micha was randomly chosen from the 26 readers who responded to our ED81 survey.
Weblink of the month
26 Australian harm reduction videos from the early days of the response to AIDS are now available via the web. They’d been gathering dust in the bottom drawer of various services around NSW and Queensland, unloved and unwatched for years. There is a spreadsheet available with all the details of the films. Check them out https://vimeo.com/ user12611303
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters. Cover photo by VOCAL-NY via flickr.com
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Other readers want to hear your story
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“I have received your valued publication for many years and it helps me deal with my hep C. It continues to inform me, keeping me upto-date with options for treatment. It helps me emotionally as I read and sometimes re-read the stories of others. I even have articles that I found so incredibly helpful, that I have cut out and kept.” RP, Tasmania.
Hep Review magazine is a lifeline for many people, linking them to news, information, views and stories. We want the voice of people with hepatitis to ring loudly through the magazine. Please consider sharing your story. We can send you a guide to writing your story. Published stories attract a $50 gift card payment. Your contact details must be supplied (for editorial purposes) but need not be included in the printed article. Articles should be roughly 400 words or 800 words, handwritten or typed. • Further conditions apply. For more information or to submit your story, please contact pharvey@hep.org.au or 0412 885 201. Also see our call for photos on page 43.
Letters 8 Australian news 9 World news 15 Features Hep C activists march on World Health Organization 2 Ilbijerri puts message out in last showing of Chopped Liver 20 PCR or antibodies: do I have hep C or not? 21 Drug crime budgets leave spending on harm reduction way behind 22 Former Black Panther cancer lockdown 23 Progress slow on “forgotten cancers” 24 Hepatitis crisis looms, warns expert 23 You got a friend – hepCaustralasia 26 More than 5 million Australian adults now have high cholesterol 30 Telaprevir and dietary fat: an update 31 New US reforms aimed at curbing prison population 32 Ancient dinosaur birds carried hep B 38 German surgeons operate using tablet 38 Film fights the threat of hep B 39 New hep B education tool for GPs 56 Advocacy A winter advocacy update 37 My story Mark’s story: Waiting for the next best thing 36 Young, healthy and diagnosed with hep C 40 Research updates Hep B and vitamin D 58 IL28B, genotypes, sex linked to clearance 59 Telaprevir safe, effective, among older people 59 Anti-HBV effect of Chinese herbal medicine 60 Epidemiology and natural history of hep C 60 Mental health workers knowledge and attitudes 60 Risk of transmission very low in monogamous heterosexual couples 61 Hep C among people with bleeding disorders 61 Psychiatric patients excluded from treatment 61 Regular features Harm Reduction poster: injecting sites 34 Hep Chef – Apple cinnamon Bircher muesli 46 Hello Hepatitis Infoline – injecting in prison 48 Reader survey form 49 Membership form 57 Pharmaceutical treatment for hep C 62 Complementary medicine 63 Support and information services 64
Hep Review magazine
Edition 82
December 2013
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ONLINE
Meeting up To talk
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I would like to know if there are any get togethers or places near my postcode where I could meet and talk to people with the hep C and the ones who’ve done the treatment.
Want to talk about anything hepatitis related? You can now chat instantly with one of our Infoline workers via www.hep.org.au Just click the blue Live Support button at the top of the site, answer some confidential questions for our stats and you’re able to start chatting. There’s no need to sign in or download any new software. Simple! You can use the online chat service between 9am to 5pm weekdays (except Thursdays when it is available from 1-5pm). The service provides free information, support and referral to anyone in NSW.
For info, support and referral online
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Anon, NSW Hepatitis NSW runs groups called Live Well where people meet weekly (for six weeks) with the aim to clear misconceptions and learn how you can better manage your hep C. Hepatitis NSW also has a phone service called HepConnect, where you’ll be put in touch with a worker who has direct experience of hep C and treatment. There is also a web forum called hepCaustralasia which links up people from all across Australia and New Zealand. Support groups are held in certain areas of NSW. Check page 65 for more details. You could also come into our office to do some volunteer work. Many of our volunteers are people living with hepatitis and volunteering is a great way to get to meet other people. • For more info on all the above, please check out the various promos found in this edition.
Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, lifestyle education, monitoring of side-effects and referrals to other services. You will just need a referral from your local GP to attend the clinic. This is a great opportunity to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today. • For more info, please contact Katherine McQuillan on 6330 5866 or 0407 523 838
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Image via Google Images
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Image courtesy of Google Images
Raising western hep awareness
Special care at hand for western hep C New South Wales – People are being reminded that Dubbo has specialist services for treatment of hep C. Spokeswoman for Western NSW LHD, Georgiana Simpson, said that specialist services are available in Dubbo, Orange and Bathurst. “Along with treatments which became available on the PBS in April this year, people now have increased access to services, with a cure now possible for the majority of people,” she said. Ms Simpson said the most important and effective way to prevent hep C transmissions was to not share equipment used to inject drugs. “This should be supported by the continuing expansion of Needle and Syringe Programs (NSPs) to ensure all people who need to access sterile injecting equipment can do so,” she said. Ms Simpson urges people with hep C to visit their doctors and have their liver assessed. “This will help them decide whether they should go onto treatment sooner rather than later,” she said.
New South Wales – As part of NSW Hepatitis Awareness Week, people living in the Narromine Shire were urged to consider data from 2010-11 showing that Western NSW and Far West Local Health Districts (LHDs) had the second and third highest hep C notification rates respectively, of all geographic based LHDs. This is part of an overall trend since 2002/03 whereby hep C notification rates for people in outer regional and remote areas of NSW are now higher than for people living in major cities (58.3 per 100,000 in 2010-11 versus 40.9 per 100,000). Hepatitis NSW CEO, Mr Stuart Loveday, said there could be a variety of reasons for these results, including greater awareness and more people coming forward for testing. “[There should be] continuing expansion of Needle & Syringe Programs to ensure all people who need to access sterile injecting equipment can do so,” said Mr Loveday. He also says that younger people should avoid sharing equipment used for tattooing and body piercing, including at ‘backyard’ parties and by friends, because blood-to-blood contact is also possible in these circumstances. • Abridged from narrominenewsonline.com.au (25 July 2013) http://tinyurl.com/lw7sf3u
• Abridged from dailyliberal.com.au (20 Aug 2013) http://tinyurl.com/lmpuy4y
St Vincent’s viral hepatitis clinic St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, Sydney, offers treatment for hepatitis. Featuring a Fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment. • For further information, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au Image courtesy of Google Images
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Northern hep high New South Wales – The NSW Northern Rivers area has the third-highest rate of hep C in NSW. This is something that often goes unmentioned in conversation, but healthcare professionals are urging people not to keep quiet about seeking treatment or diagnosis. The revamped Lismore Liver Clinic re-opened on Thursday with staff ready to provide testing, counselling and treatment for those living with hepatitis. Lismore Mayor Jenny Dowell said, “Two in 100 people are affected by hepatitis B or C and it’s great to see Lismore is leading the way with treatment at the new liver clinic.” HIV and related programs (HARP) area manager Jen Heslop said [raising awareness] is about “demystifying” hepatitis. “We want to make people aware that it is just another chronic health problem,” Ms Heslop said. “There is a lot of stigma and discrimination around hepatitis, but this comes from ignorance. If we can educate people, that would be great.”
Indigenous hep C outcomes no different Northern Territory – Indigenous Australians treated for hep C are just as likely to be cured of their infection as other Australians, a study finds. There were no differences between Indigenous and non-Indigenous hep C patients in the proportion who achieved a sustained virological response, data from 250 patients attending a Darwin clinic showed. Writing in the MJA researchers from the Menzies School of Health Research said ethnicity was a major determinant of treatment responsiveness, due to differences in the interleukin-28B gene. But Indigenous people tended to carry a favourable polymorphism in the interleukin-28B gene and were therefore not at greater risk of failing treatment, their study found. • Abridged from gastroenterologyupdate.com. au (9 July 2013) http://tinyurl.com/lnrkphj
Patients can visit with a referral from a GP or are welcome to drop in to the clinic in the Westlawn building, 29 Molesworth St, 02 6620 7539. • Abridged from northernstar.com.au (27 July 2013) http://tinyurl.com/m3ll6uy
Did you take part in the Australian Treatment Outcome Study ? We are looking for people who were part of the Australian Treatment Outcome Study (ATOS), a study run by the National Drug and Alcohol Research Centre, looking at what treatments work best for heroin users in Australia. ATOS started in 2001-2002 and most people had their first interview at a drug treatment service (e.g., at a methadone clinic, detox, or rehab) or at an NSP. These same people were interviewed again several times up until 2005. If you were in this study, some of the interviewers you would have talked to are Kath, Kate, Alys, Anna, Sandra, Ev and Nicky. The study has been re-funded for an 11-year follow-up, and we are looking for the same people we interviewed between 2001 and 2005 to do another interview. If you think you were interviewed as a part of ATOS, please call Jo on 9385 0304 or 0477 426 503. The interview will take about an hour and you will be given $40 for out of pocket expenses.
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new Software tool for hep B risk
shortage of needles in Tassie
Victoria – A computer program could help GPs spearhead a drive to tackle the incidence of liver cancer caused by hep B, a pilot study has found.
Tasmania – Tasmania’s leading drug authority has called on the State Government to fund more needle vending machines to reduce the incidence of hep C in the community.
The program assesses the risk of chronic hep B infection by using existing practice software to predict country of birth from surnames and match patients to existing surveillance records. Dr Ben Cowie, of the Victorian Infectious Diseases Service at the Royal Melbourne Hospital, said ideally every patient’s country of birth would be recorded on all practice management software and records, although this happens in less than 5% of practices. “Building greater awareness among healthcare professionals of the link between hepatitis B and liver cancer, its prevalence and treatment options, is essential to improve screening and treatment uptake, and help prevent progression from hep B infection to cirrhosis and liver cancer,” he said. More than 218,000 people are thought to be living with chronic hepatitis B in Australia. The most at risk include those born overseas in regions where hepatitis B infection is endemic, such as the Asia-Pacific region, and their children. People of Aboriginal and Torres Strait Islander background are also at greater risk. • Abridged from medicalobserver.com.au (25 June 2013) http://tinyurl.com/lrk95e8
The Alcohol, Tobacco and other Drugs Council (Tasmania) said injecting drug users were reusing needles and syringes because needle outlets were closed or too far away. ATDC chief Jann Smith said it was absolutely important for drug users to have easy access to sterile equipment, but it was not cost-effective to open the NSPs 24 hours. She said vending machines were a viable alternative and people were comfortable using them. Department of Health and Human Services population health director Siobhan Harpur said funding to the NSP program had not been reduced and the availability of machines was determined by the organisations. • Abridged from themercury.com.au (23 July 2013) http://tinyurl.com/lw5mexa
Our online version of Hep Review can be found via www.hep.org.au and contains live links to the various sources shown in blue text at the end of articles. They’re another great reason to go online for your Hep Review magazine.
Do you live in Sydney’s Eastern Suburbs and have hepatitis? Are you looking for treatment? The Prince of Wales Hospital Gastrointestinal and Liver Unit, in Randwick, Sydney, specialises in treating a broad range of liver-related conditions, with a large focus on hepatitis B and C. The nursing staff coordinate all aspects of patient care for people with chronic hepatitis including, education, antiviral therapy, follow-up, medical appointments, interdisciplinary referrals and Fibroscan assessments. We also participate in a range of clinical trials offering new and innovative treatments to our patients. Other health care professionals that complement our service include Psychiatrist,
Clinical Psychologist, Dietician, Social Worker, and Clinical Research Physicians. There are daily outpatient medical clinics so waiting times for patients are minimal. For more information, phone Shona on 9382 3800 or email shona. fletcher@sesiahs. health.nsw.gov.au
Hep Review magazine
Edition 82
December 2013
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news
police officer wins hep c work compo
hepatitis doctor loses appeal bid
South Australia – A long-serving South Australian police officer diagnosed with hep C has won a battle for compensation after the Workers Compensation Tribunal ruled he contracted the virus during his employment.
Victoria – A Melbourne doctor who infected 55 of his female patients with hep C has lost his bid to appeal against his 14-year prison sentence.
The officer, who was not named publicly, said he contracted hep C during the violent arrest of a drunk driver, in October 1988. The 45-year-old officer had been unable to work since 2004 as a result of illness. SA Police rejected his claim for compensation in 2008 because it said there was not enough evidence to prove the condition arose from the man’s employment.
A group of Victorian women say they are glad the doctor responsible for infecting them with hep C has lost his bid to appeal against his sentence. Slater and Gordon principal lawyer Julie Clayton, who is representing some of the victims in a civil lawsuit, said they were relieved Dr James Peters’ sentence would stand. “Every time the matter comes before the courts it reopens the trauma that these women have already experienced,” Ms Clayton told AAP.
But tribunal deputy president Judge Peter McCusker ruled the incident back in 1988 was the only plausible source of the officer’s condition, based on medical evidence. He said the officer has never been tattooed, injected drugs, had unsafe sex or been cut during any hairdressing. The tribunal upheld the man’s claim and invited submissions about compensation.
“The rejection today by the Court of Appeal hopefully means that the women can put the criminal proceedings behind them.” Justice Maxwell said Peters’ level of moral culpability was very high, and his crimes had involved grave breaches of trust. “On each of the 55 occasions there was a breach of the duty of care,” he said.
• Abridged from abc.net.au (24 Apr 2013) http:// tinyurl.com/a38px5s
Peters’ victims are suing him, the director of the abortion clinic and the Victorian Medical Board. • Abridged from sbs.com.au (16 Aug 2013) http://tinyurl.com/ksw8bt8
resource OF THE MONTH What You Need To Know – a guide to hepatitis C
Revised in September and expanded to include information on triple combination treatment, our 80 page booklet continues to provide detailed information on a wide range of hep C topics. Anyone can phone the Hepatitis Infoline for copies. Healthcare workers can use our Faxback order form to get multiple copies of the booklets. Hepatitis Infoline – 1800 803 990 Faxback order form: http://tinyurl.com/7kctp25
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Overdose deaths overtake road toll
Benitec survives six-year patent war
Australia – A surge in accidental and prescription medicine overdoses has seen drug deaths overtake the national road toll for the first time on record.
Australia – CSIRO spin-off Benitec Biopharma has emerged successful from a six-year patent battle in the US, and is set to begin clinical trials on potentially lucrative treatments for hep C and other diseases.
Road accidents claimed 1323 lives nationally in 2011 while 1383 people died of drug overdoses, exclusive Australian Bureau of Statistics figures reveal. With more than three in four drug deaths deemed accidental, Anex (harm reduction) CEO Mr John Ryan said the revelation that the crossover point between road deaths versus overdoses had been reached underlined the success in fighting the road toll and the need for greater efforts to tackle rising drug deaths. The ABS data provided to Anex is the most up-to-date available. Since 1997, when reliable drug overdose data first became available, road deaths have fallen from 23.9 per cent of all deaths by unnatural causes to 14.5 per cent, slightly below the 15.2 per cent of deaths due to drug overdoses. Reflecting on International Overdose Awareness Day, Mr Ryan called for a nationwide campaign to raise public awareness of overdose risks and how to respond. Mr Ryan said the problem could be tackled through the wider provision of naloxone (Narcan), which reverses the effects of heroin and synthetic opioids such as codeine, methadone, morphine and fentanyl. • Abridged from heraldsun.com.au (27 Aug 2013) http://tinyurl.com/mg6qhej
Benitec recently completed a A$7 million capital raising and its hep C treatment TT-304 was given the go-ahead for human trials by the US National Institute of Health’s Recombinant DNA Advisory Committee. The company’s patented gene-silencing technology was developed by the CSIRO in the late 1990s. Similar technology developed simultaneously in the US led to a Nobel prize in medicine and physiology to US researchers Andrew Fire and Craig Mello. But a gruelling patent battle with Nucleonics triggered subsequent legal roadblocks that curbed Benitec’s hopes for years. “For six years we were lying dormant,” says Benitec CEO Peter French. French, who joined Benitec in mid-2010, says Benitec’s technology is “the most complex and has the most exciting potential of anything I’ve seen in my last 35 years of medical research”. “It has the potential to turn off any gene associated with any disease,” French says. “This is a great Australian story, if it works,” French says. “We’re about to be at the point where we prove it one way or the other.” • Abridged from brw.com.au (17 June) http:// tinyurl.com/k674qcd
Healthy Liver Clinic every Tuesday 10am - 12pm @ KRC ‡ ‡ ‡ ‡ ‡
Information about hepatitis C transmission and prevention Hepatitis C testing and monitoring Fibroscan referral Specialist treatment Doctor, nurse and counsellor available
Hep Review magazine
Kirketon Road Centre (KRC): Above the Darlinghurst Fire Station, entrance on Victoria Street, Darlinghurst 2010 Phone: (02) 9360-2766
There’s a lot you need to know about hepatitis C - like the fact it can be treated!
Edition 82
December 2013
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Aussie drug problem call for increased HEP treatment for a world-worst Australia has one of the world’s most serious drug users drug problems, according to a major international study. But it is not alone: Britain, the US, South Africa and Russia also have major habits and high levels of illness and death caused by drugs. On a regional level, Australasia has the highest rate of opioid and cannabis dependence and only south-east Asia is higher for amphetamines. The research is part of the Global Burden of Disease Study 2010 published in The Lancet. The study, led by Professor Louisa Degenhardt from the National Drug and Alcohol Research Centre at the University of New South Wales, is the first to analyse the global health burden caused by the four drug groups. It estimates that 52 million people are dependent on the drugs and shows opioid dependence is the biggest killer and cause of disability of the four. Much can be done to reduce this burden, particularly treatments for opioid dependence and needle and syringe programmes, Degenhardt says. The study shows Australia managed to reduce the burden of opioid dependence, primarily through substitution with methadone and buprenorphine.
Australia – Researchers at the Kirby Institute at the University of NSW have released new recommendations that suggest the burden of liver disease could be dramatically reduced by increasing treatment for hep C infection among people who inject drugs. Kirby Institute senior lecturer and co-lead author of the recommendations Dr Jason Grebely said treatment for hep C infection among people who inject drugs remained unacceptably low. “Clinicians have been hesitant to recommend treatment in this population because of a lack of understanding about how lifestyle factors may impede successful treatment,” Grebely said. Health Minister (at the time of writing), Tanya Plibersek said the federal government was providing more than A$220 million over five years to subsidise hepatitis C medications boceprevir (Victrelis) and telaprevir (Incivo) through the Pharmaceutical Benefits Scheme (PBS). • Abridged from starobserver.com.au (5 Aug 2013) http://tinyurl.com/kfqrn5k
• Abridged from theguardian.com (29 Aug 2013) http://tinyurl.com/lb7aar2
Royal Prince Alfred Hospital liver clinic Royal Prince Alfred Hospital, Camperdown, Sydney, offers specialist services for people with liver diseases including viral hepatitis. Daily medical and nursing clinics provide liver health checks, fibroscan, IL28B gene tests, treatment assessment and management including access to newer therapies via clinical trials. Image, source unknown.
The clinic also provides specialist care and treatments for people with advanced liver disease and liver cancer, and is home to the NSW Liver Transplantation Unit.
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Do you want to know more? Please contact the following specialist nurses: Hep C – Sinead Sheils 9515 7661 or Sue Mason 9515 7049 Hep B – Margaret Fitzgerald 9515 6228 Liver Transplantation – Margaret Gleeson 9515 7263 or Fiona Burrell 9515 6408 Liver Cancer – Barbara Moore 9515 3910
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Australia – In the largest national study of its kind, researchers from the Kirby Institute examined data provided by nearly 36,000 participants in the Australian NSP Survey between 1995 and 2010 and found the number of new cases of hep C declined by more than half. Their findings are reported in the American Journal of Public Health. “The decline in new cases coincided with the expansion of programs like opioid substitution therapy and needle and syringe programs, which aim to minimise the spread of blood-borne viruses,” said Jenny Iversen, the study’s lead author. “We also found that fewer young people are starting to inject drugs and that the types of drugs people are injecting have changed, which may have contributed to a decline in the number of people contracting the virus.” “The study findings are incredibly encouraging,” said Stuart Loveday, President of Hepatitis Australia. “Funding for these types of efforts must be sustained in order to maintain the progress we’ve made in Australia.” • Abridged from kirby.unsw.edu.au (14 June 2013) http://tinyurl.com/mhk58q6
Image courtesy of Google Images
Hep C down among people who inject drugs
US Liver Cancer Deaths Double in Two Decades USA – The rates of liver cancer in the United States more than doubled between 1990 and 2010 while deaths resulting from cirrhosis jumped 43%, the National AIDS Treatment Advocacy Project (NATAP) reports. Specifically, an estimated 9,300 Americans died of liver cancer in 1990 and 19,500 in 2010, according to statistics charting the top causes of death in the United States and published in the Journal of the American Medical Association. The study authors suggest this increase may be a consequence of hep C, which is a major cause of liver cancer. • Abridged from aidsmeds.com (5 Aug 2013) http://tinyurl.com/mgltujv
Liverpool Hospital liver clinic We offer multidisciplinary specialist services for people in South Western Sydney who have hep B, hep C or liver cancer and other liver disease. Interpreters and multicultural support are available for people who attend our clinic. We offer Fibroscan® to assess your liver for damage without a liver biopsy. After assessment you’ll receive a detailed discussion about the best treatment options for you. We also offer services for pregnant women with hep B or C. We offer all new available therapies for hep C as well as access to new therapies through our participation in clinical trials.
Our DVD about hep C treatment, and our DVDs and brochures about hep B, may help you better understand these conditions. These are also available through YouTube: http:// tinyurl.com/nsyj2e9 • For more information, phone: 02 8738 4074 or email: gastroliver.liverpool@sswahs.nsw. gov.au
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December 2013
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news
las vegas hep C doctor convicted
75% of Patients in the dark on Trials
USA – Dr Dipak Desai has been found guilty of all 27 criminal charges he faced, including second-degree murder, for his role in the largest hep C outbreak in US history. But the former gastroenterologist’s face portrayed no emotion as the jury’s verdict was read in a Las Vegas courtroom, even as his wife sobbed and his daughter cried out.
UK – Almost three-quarters of patients who completed a recent survey have never been informed of clinical trials by their doctor. The survey, carried out by Hepatitis C News, an online community managed by Tudor Reilly Health, reveals that the internet is now the key source of clinical trial information for the general public, rivalling advice from healthcare professionals.
Dr Desai was led out of court in handcuffs with former colleague Ronald Lakeman. The pair stood accused of reusing contaminated vials of the sedative propofol. They were also charged with submitting falsified anaesthesia records to insurers for reimbursement, limiting the use of supplies needed for safe endoscopic procedures, failing to properly clean endoscopes, and overloading case schedules and rushing through procedures in order to boost the facility’s bottom line. Murder was added to the litany of charges when a former patient infected with hep C died in April 2012.
Of those who took part in the survey, just under half of clinical trial participants had found out about studies through their doctor. One-third of respondents said that they didn’t know enough about clinical trials, suggesting that there is an opportunity to improve awareness and increase trial participation through better patient-focused information, both online and in GP surgeries.
Keith Mathahs, who worked alongside Dr Desai, copped a plea, negotiating a potential life sentence down to a maximum 6-year jail term in exchange for testifying against his former colleagues. • Abridged from outpatientsurgery.net (2 July 2013) http://tinyurl.com/m4fnpsj
“The internet appears now to have drawn level with doctors as a source of information about clinical research,” said Julie Walters, Managing Director of Tudor Reilly Health. “Patients are increasingly taking ownership of their health and are keen to equip themselves with the information they need. These findings emphasise the need for those conducting trials to consider reaching potential participants through other means.” • Abridged from prweb.com (July 18, 2013) http://tinyurl.com/m44mqke
The multi disciplinary Liver Clinic at St George Hospital, Kogarah, Sydney, supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials.
For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 lisa.dowdell@sesiahs.health. nsw.gov.au
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Image via Google Images
St George Hospital liver clinic
news
NZ TRIPLES UP ON HEP TREATMENT
BODY PARTS dentist dies of liver cancer
New Zealand – Pharmac has earmarked A$15.6 million to fund treatments for liver infection including boceprevir, a new drug to treat hep C.
USA – A former dentist who ran a multimilliondollar operation selling stolen body parts for transplants and research has died from liver cancer while serving a 30-year sentence in the New York State prison system.
Pharmac began funding boceprevir (Victrelis) from September 1 for certain patients as a triple therapy with other drugs. Many patients did not respond well to current treatments but could be helped with boceprevir, said Pharmac medical director Dr Peter Moodie. Patients will be genetically tested to determine whether they qualify for the new medicine. About 300 patients are expected to start the triple therapy within the next year. Pharmac has also negotiated a price reduction for the Pegasys brand of the current treatment, pegylated interferon with ribavirin. • Abridged from nzherald.co.nz (22 Aug 2013) http://tinyurl.com/kdp6bbz It is concerning to note that the NZ government approved only one of the new direct acting antivirals. The other, telaprevir, was not approved as a funded therapy.
Michael Mastromarino, who died aged 49, had pleaded guilty in 2008 to body stealing and other charges related to a A$5 million enterprise that authorities said involved harvesting bone fragments and flesh from bodies at funeral homes without the knowledge of the victims’ families. The parts were then sold, without being properly inspected for diseases, for transplants and medical research. Mastromarino surrendered his state dental license after testing positive for narcotics in 2000, according to reports from that time. He then opened a new business, BioMedical Tissue Services. • Abridged from northjersey.com (8 July 2013) http://tinyurl.com/mqcgztd
Hepatitis NSW commented on this in the September 2013 edition of The Champion, our e-newsletter available for free by subscribing at http://tinyurl.com/l6uwctm
Paediatric viral hepatitis clinic
Hep C and hep B can be passed on from pregnant mother to baby and occur in unknown numbers in children.
Children with hep B and hep C are usually well and often unaware of their infection. Our Paediatric Viral Hepatitis Clinic will provide 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 these children to reduce the risk of significant liver disease in later life. For information, contact Brooke Andersen at the Children’s Hospital Westmead, Sydney, on 9845 3989 or brooke.andersen@health.nsw.gov.au
Image via Google Images
Hep Review magazine
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December 2013
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Engineered mice act as hep C model USA – Researchers have created the first strain of mouse that is completely vulnerable to hep C. The advance, reported today in Nature, promises to aid efforts to develop a vaccine against the virus. Chimpanzees have been the primary animal model for studying hepatitis C infection over the last several decades. But in the past few years scientists have begun phasing out chimp experiments. Enter the mouse, which is naturally immune to hep C. To transform the rodent into a model organism for studying infections with the virus, researchers genetically altered the animals to hamper their natural immune response. The team also engineered the animals to produce proteins found on the outside of human liver cells. “It has been very difficult to get to this point,” says Alexander Ploss, a virologist at Princeton University in New Jersey and lead author of the study. “For the first time you can study the whole spectrum of hepatitis C replication in a mouse model,” says Lishan Su, an immunologist at the University of North Carolina at Chapel Hill, who was not involved with the study. “This model still cannot replace chimpanzees,” says Ploss, who is working with his colleagues to improve the mouse strain. “It gives us a first glimpse of what may be possible with mice in coming years.”
Chimp stem cells could pave way for new treatments USA – Researchers have shown for the first time that hep C can replicate in monkeys, by differentiating monkey stem cells into liver cells and inducing successful infection. This may lead to the first new animal model and provide new avenues for developing treatments and vaccines. Scientists have tried for decades to develop animal models to study hep C, but the virus was incapable of infecting any species except for humans and chimpanzees. With a recent National Institutes of Healthimposed moratorium restricting chimpanzee research, the Mount Sinai research team turned to a close relative of chimpanzees and humansmacaques. Led by Matthew Evans, PhD, and Valerie GouonEvans, PhD, of Mount Sinai, the research team sought to find out why previous attempts to infect macaques with HCV failed. “These findings may open doors for the field of HCV research, lead to new animal models, and hopefully vaccines and therapies,” Dr. Evans said. The research is published in the journal Gastroenterology. • Abridged from zeenews.india.com (3 Aug 2013) http://tinyurl.com/lw8gr3t
• Abridged from nature.com (31 July 2013) http://tinyurl.com/mk8jsep
Lismore Liver Clinic We provide a free public clinic specialising in hepatitis C and B. The clinic is run by nurses working with Specialist doctors to provide assessment, information and treatment. If you have hepatitis C or B please come and see us. We can provide free access to a Dietician for nutritional support and also to a Counsellor to Image / Mark Fuller assist you prepare emotionally for treatment and identify the social supports you will require. Please get in touch with us on 6620 7539
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feature Q&A: Can I give blood? I have a sought-after blood type (O-negative) and want to give blood. I have been cured of hep C but have been told that my blood still shows I have positive hep C antibodies even though I don’t have it. Am I still able to give blood? Do they still want and need my blood? The Blood Bank asks a series of questions when people want to give blood and if you’ve ever had hep C, they knock you back. This shouldn’t be taken as discriminatory or as any judgement on you; it’s just that the Blood Bank is so very careful not to do harm – that is, transfer any type of blood-borne virus or illness on to other people. But hats-off to you for wanting to help with this great community service – donating blood. NB: all people who are cured of hep C continue to test hep C antibody “positive”. The virus is cleared but the body continues to produce antibodies. Also see page 21.
HEPATITIS
INFOLINE INFO, SUPPORT, RE FERRAL
FREE CALL F LANDL
1800 803 990
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For more info, call the Hepatitis Infoline on 1800 803 990
Nepean region Liver Clinic We provide a range of services for persons and families affected by hepatitis B and C. We assist with the assessment and treatment of viral hepatitis. We have a Fibroscan machine and satellite nursing clinics are held at Lithgow and Blue Mountains hospitals, including opioid substitution clinics. Services are also provided at Mt Druitt Aboriginal Medical Service. We can also provide possible access to clinical trials. • For more information, contact Vince on 4734 3466
Hep Review magazine
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Edition 82
December 2013
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Ilbijerri puts message out in last showing of Chopped Liver Mildura and Robinvale youth have learnt about the realities of hep C – and the risk factors that contribute to its spread – through a live theatre production.
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ody Armour, performed by members of the Ilbijerri Theatre Company, follows the journey of three teenagers – Dannii, Harley and Rose – as they experiment with at-risk activities such as piercing, tattooing and blood sharing. Hepatitis C is a blood-borne virus that attacks the liver and affects hundreds of thousands of Australians every year. Maurial Spearim, who played the part of Rose, said theatre was an effective way of conveying a health message to a younger audience. “It’s informative, engaging, it’s funny, it’s in their language – so they understand it – but without preaching,” she said.
Ms Spearim said the show had been performed for four seasons, ending with yesterday’s shows. “The show itself has had four seasons, so we’ve been touring the last four years and this is the last year of this show,” she said. “This afternoon we have the last performance ever of this show (at Robinvale).” The theatre company’s next production will be another youth show with a focus on sexual health. • Article by Megan Frankel-Vaughan. Photo by Clancy Shipsides. Abridged with thanks from the Sunraysia Daily (31 Aug 2013) http:// tinyurl.com/l85xnm9
Photo by Clancy Shipsides via Sunraysia Daily
Ms Spearim said the students had an opportunity to learn from the characters’ mistakes, “rather than them sitting in a classroom and writing or watching from a slideshow.”
Body Armour was performed both at Chaffey Secondary College and Robinvale Murray Valley Aboriginal Co-op in Victoria.
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PCR or antibodies: do i have hep C or not? In our Hep Review reader survey, a person asked, “I am antibody positive but PCR negative: do I have hep C or not?” The answer is “no” and here’s some information drawn from our factsheets that explains why.
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ep C diagnosis involves different types of blood tests and a risk assessment. Generally, people are recommended to have initial blood testing. If anything odd shows up, they are then recommended to have a hep C PCR test.
The likely scenario is that when Jack caught his hep C, he was one of the lucky 25% of people who clear it naturally within the first six months.
How do hep C antibody tests work?
If people clear their hep C infection, they still keep their antibodies. Thus, a positive antibody test doesn’t always mean someone has a current infection. To confirm whether a person has hep C or not, a PCR test is usually performed. What is PCR testing? Unlike the antibody test that looks for signs that the body has at some time come into contact with hep C, the PCR blood test looks for current presence of the virus.
Photo by knowledge via flickr.com
If a hep C antibody blood test comes back positive, it means that hep C antibodies were found – proof that the virus has entered your bloodstream at some point in time.
Jack is antibody positive but PCR negative: does he have hep C or not? The answer is no.
Here’s a scenario that is reasonably common Thirty years ago, “Jack” caught hep C. Ten years ago he was diagnosed with hep C. He’s recently visited a new doctor who ordered a blood test that showed he doesn’t have hep C at all. Jack is probably confused about whether he has hep C or not. He might wonder if his recent test was somehow wrong because for 10 years he has believed, “I have hep C”. He might wonder if he’s miraculously cured himself of hep C without ever being on treatment.
He appeared to have hep C when he was given the antibody test but it was only when the hightech PCR test was used that his true diagnosis could be given: “hep C negative”. •
Paul Harvey, Hepatitis NSW NB: also see our Testing Overview Factsheet: http://tinyurl.com/maax3ya
Hepatitis B Bear evaluation Just got to http://www.surveys.unsw.edu. au/f/157455/2115/ to learn more or contact Elena Cama at e.cama@unsw.edu.au
We really hope you’ll be able to give your opinions on this resource. This is an evaluation conducted by Professor Carla Treloar at the Centre for Social Research in Health, University of New South Wales.
Hep Review magazine
Edition 82
December 2013
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Photo via www.GdeFon.ru
We need your help in reviewing a new resource on hepatitis B. You’d just need to watch a video online and complete a brief survey to enter into a draw to win an iPad Mini.
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Drug crime budgets leave spending on harm reduction way behind Australia is spending more than a billion dollars each year fighting the ‘’war on drugs’’ but has slashed funding for harm reduction, a landmark analysis has found.
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wo thirds of the A$1.7 billion Australian state, territory and federal governments spent on drugs went on law enforcement, according to the Government Drug Policy Expenditure in Australia report.
evidence I suppose that it might not work as a policy,” she said. “We continue to arrest people and drugs keep coming into Australia … and profits continue to be made.”
Drug experts say Australia’s spending simply does not match the evidence and have called for a drastic readjustment in favour of treatment and harm reduction.
Australian National Council on Drugs executive director Gino Vumbaca said politicians were under pressure to put money into law enforcement.
Report author Alison Ritter said it was gravely concerning that spending on harm reduction measures had dropped since a similar analysis in 2002.
“It is easy to show off your interception of half a ton of drugs, but it’s much harder to show how a service has improved the lives of 20 people over a year,” he said.
“It’s a shift in policy that hasn’t been formally acknowledged,” she said. “There is absolutely no reason that investment should have decreased.” The report found Australia spent 2.1% of its drugs budget, or A$36 million, on harm reduction in the 2009-10 financial year. This compared with A$361 million, or 21%, on treatment and A$1.1 billion on law enforcement. Professor Ritter, the director of the drug policy modelling program at the University of NSW, said it was difficult to study the effects of law enforcement, so it was hard to compare it to treatment and harm reduction. “We don’t have good evidence that law enforcement works, and we have anecdotal
John Ryan, the chief executive of drug harm minimisation group Anex, called for a productivity commission investigation into Australia’s drug spending. “Australia is meant to have an evidencebased drug policy, yet investment in proven economically and socially efficient harm reduction programs has fallen away as Australia’s illicit drug markets have morphed and grown,” he said. “Some serious number crunching and examination of evidence, rather than purely emotional or ideological reactions, is required.’’ • Abridged from smh.com.au (20 June 2013) http://tinyurl.com/px2xevx Also see page 32. See the report at... http://tinyurl.com/m5y7m9m
Image via Google Images
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Former Black Panther cancer lockdown
American, Herman Wallace, 71, has been diagnosed with hep C related liver cancer and the prognosis is grave. Wallace, a former Black Panther, is still being held in solitary after more than 41 years.
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mnesty International supporters worldwide have campaigned over the years for justice in Herman Wallace’s case. He has no disciplinary record to indicate that he is a threat, and the Louisiana prison authorities have since 1996 broken their own policy to justify his continued detention.
Their lawyers argue that both have endured physical injury and “psychological damage” from living most of their adult lives in lockdown. Although Wallace is not manacled or shackled, his door is locked. There is no television and little contact with the outside world. Telephone privileges that were made available in the beginning have been revoked by the prison. Doctors are anxious for him to see an oncologist at the LSU Medical Center in New Orleans.
Image by l*ght//m_tion, via Flickr.com
Convicted of armed robbery, Wallace and others were sent to prison in 1971. They began organising to improve conditions at the prison, which did not win them points with the prison administration. In 1972 Wallace and Albert Woodfox were prosecuted and convicted for the murder of a prison guard. They have been fighting the conviction ever since,
Three days a week, they may use that hour to exercise alone in a fenced yard.
pointing out that one of the eyewitnesses was legally blind and the other was a known prison snitch who was rewarded for his testimony.
The Louisiana Department of Corrections will not discuss Wallace’s medical condition “due to privacy concerns.”
Albert Woodfox’s conviction was overturned for the third time, but he remains in prison while the state appeals. Wallace lost his latest challenge, but continues to fight the murder conviction.
In a 2006 letter to Jackie Sumell, with whom he is collaborating on a project called The House That Herman Built (now the subject of a documentary film), Wallace wrote: “I’m often asked what did I come to prison for – and now...it doesn’t matter. What matters now is what I leave with.”
For 41 years, Wallace and Woodfox have spent at least 23 hours a day in cells measuring 6 feet by 9 feet. They are sometimes given one hour a day to take a shower or a walk along the cell block.
• Abridged from motherjones.com (26 June 2013) http://tinyurl.com/pp2cfuj
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progress slow on “forgotten cancers” Australia’s mortality rate for all cancers has dropped 28% in 20 years, but the death rate from liver cancer has skyrocketed according to Cancer Council data.
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ancer Council NSW has released data highlighting overall successes in cancer research but reminding us of the struggle to fund research on “forgotten cancers”.
Photo by SpectrumHealth via flickr.com
The data is drawn from Cancer Council’s State of Cancer Control report. Researchers compared the mortality rate from various cancers in 1987 with the expected cancer death rate in 2007 and the actual cancer death rate in 2007.
from cancer,” said Associate Professor Freddy Sitas, author of the report and Director of Cancer Council NSW’s Cancer Research Division. “Then you have these other cancers where the mortality rate has gone up, like liver cancer.” “The slow rate of progress in some cancers was partly explained by a lack of research,” he said. The increase in the mortality rate for liver cancer may partly be explained by migration patterns, said Associate Professor Sitas. “We know that certain migrant groups had higher rates of liver cancer than others. These groups may possibly have higher rates of hepatitis B and C, which is a contributor to liver cancer,” he said.
cancer of the liver...has added importance because its incidence rate has trebled and its mortality rate more than doubled in Australia in the past 30 years “We have seen remarkable changes in survival from cancers like breast cancer because a lot of money is being poured into research in that area. We want to see money poured into these other cancers so we can see the same progress there,” said Associate Professor Sitas.
The figures show that between 1987 and 2007, the mortality rate for all cancers dropped by 28% but the rate for liver cancer rose 70%. “The big picture good news is that there are almost 8000 people alive and walking around today who, if this was 1987, would be dead
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Bruce Armstrong, Professor of Public Health at University of Sydney said “while cancer of the liver doesn’t rate so highly...it has added importance because its incidence rate has trebled and its mortality rate more than doubled in Australia in the past 30 years.” Liver cancer is almost completely preventable, being caused mainly by the preventable diseases hepatitis B and C viruses, and alcohol excess, he said. • Abridged from theconversation.com (20 Aug 2013) http://tinyurl.com/m2ozp7m
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Hepatitis crisis looms, warns expert Australia faces a hepatitis crisis without an urgent lift in immunisation and treatment levels, warn experts in the field.
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iver complications resulting from hep B kill almost 400 Australians each year, yet fewer than one in five people living with chronic hep B are receiving anti-viral treatment. Dr Benjamin Cowie, an infectious diseases doctor at Royal Melbourne Hospital, says state and federal governments must rethink current policies to stem a blow-out in deadly liver disease and liver cancer cases.
for hep B and those who don’t have hep B, to seek vaccination. The international community development student, who arrived in Australia in 2002, was first diagnosed about four years ago while still in high school. Doctors traced her hep B back to her mother, who was herself undiagnosed. • Abridged from theage.com.au (28 July 2013) http://tinyurl.com/o3b77b9
Speaking on World Hepatitis Day, Dr Cowie said more than half of the 220,000 people living in Australia with chronic hep B are undiagnosed. A similar number are living with chronic hep C.
“More resources are absolutely required both for patient and healthcare worker education, but also to develop programs to try and implement vaccinations and treatment uptake in our infected communities.” Somalia-born hepatitis B patient Nafisa Yussuf is urging migrant communities to be tested
Photo by UMIAD via flickr.com
“That’s why liver cancer is increasing faster than any other cause of cancer death in the country,” Dr Cowie said.
Researchers from the Centre for Social Research in Health at UNSW are conducting a survey examining the social aspects of hepatitis C among gay and bisexual men. We are seeking gay and bisexual men who are living with HIV and/or hepatitis C to complete an anonymous online survey. You can access the survey at http://hepcsurvey.csrh.org/ The findings of this study will lead to the development of strategies to minimise new hepatitis C infections among gay and bisexual men, and help improve health care and social support services. For more information, please contact Dr Toby Lea at toby.lea@unsw.edu.au or Dr Max Hopwood at m.hopwood@unsw.edu.au
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You Got a Friend – Hep C Australasia When you’re down and troubled And you need some loving care And nothin’, nothin’ is goin’ right Close your eyes and think of me And soon I will be there To brighten up even your darkest night (Carole King 1971) espite over 20 years of activism in the hep C community, today some people are disclosing to friends, family, even longterm partners and being met with rejection and stigma. Others are being diagnosed in middle age after years of abnormal liver tests that incredibly, nobody thought to check. In hospitals, specialists from unrelated disciplines wonder out loud whether it’s ‘worth’ treating people who use drugs. Conversations between health care workers and patients are often directed by the worker with a focus on information they think might be most relevant. People leave ultrasound biopsy or specialist consults with their heads spinning. In the initial stages after a diagnosis, even after the most compassionate, understanding and up to date information, people can still feel bewildered, afraid, isolated and alone. But since 2003, help of a different kind has been available 24/7 through the Hep C Australasia website. What it offers is not new. For anyone facing stigma of any kind, finding peer support usually changes things for the better. Hep C Australasia combines the very best of peer support with the levelling impact of the internet. Some might say it’s quietly forcing change in the delivery of information while empowering people affected by hep C. According to Hepatitis NSW, the site was first created to address the fear of disclosing hep C status, even on the telephone, and the barriers this creates to receiving services. The site aimed then as it does now “to create a safe hang out space for people affected with hep C”. A space where you’ve got a friend. The site morphed in 2006 to resemble the userfriendly format it is today. For those old enough to remember Carole King and perhaps lacking tech
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Photo by CWMc via flickr.com
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savvy skills, there is plenty of help to navigate the site and get started. Currently with 643 users, it has reached out to many who at best, might otherwise have suffered in silence, at worst may have never taken the steps towards seeking effective responses to their health care. As Fungi’s story (quoted next page) shows, the site provided what she needed to arm herself with information and demand treatment that had previously been denied (albeit some years ago now). July was the site’s busiest month ever, with many posts received and difficult questions answered in plain English. “This site is awesome,” posts a member. “It’s realpeople advice.” From another, “the accuracy I got from this site was much better than from the liver people.” A big part of the appeal of web-based services is the anonymity they provide. “Having a username – not your real ID – offers a lot of anonymity and often people will be more forthright and upfront and honest than might occur normally,” said Dallo, 61, a member since 2011.
feature Nonna, 58, illustrates further, “my normal life is that of a middle class health care worker with four children, three grandchildren and living in an inner-city suburb. I had too much to lose by disclosing my past history. On the site, I was able to disclose my hep C status and the issues around having used an illegal drug in my youth.” Sometimes more tricky emotions like shame can be expressed, and then reframed and normalised, by someone who has been there. “Hepatitis C is just bad luck!” posted another member. Jena, 53, a regular user of the site posting from a small community in Tasmania pointed out that creating space for the many different ways people can be affected by hep C was one of the sites key strengths. “Our members are all at different stages, some are waiting on treatment, some are doing treatment, some have relapsed, some have achieved SVR and others are waiting for new interferon-free treatments, most heppers can identify with one or more of these groups.” Following her diagnosis, Jena was once-bittentwice-shy after a nasty disclosure experience and had decided to “go it alone”.
(Forum member, Fungi Foto, from ‘Treatment, Life Hep C and Me’ Hepatitis Australia, 2008)
made me realise that actually, I was no longer alone. The site gives me a sense of ‘home’,” Jena said. Hep C Australasia also offers space for partners of those with hep C including those living with liver transplants and those on treatment. We don’t always think about what the journey is like for those supporting us, and it provides opportunity for their voices to be heard. One partner expressed recently, “It’s a great place to vent, whine, cry and spew if that’s what you need to do.”
Image by .mw via flickr.com
“I was very nervous when I first posted, but everyone welcomed me with open arms and
“Within the first month of my diagnosis my journey took a different turn. I found help in the form of a computer, I found the Hep C Australasia website. I met some good people online…. I began to ask questions…. I then went to my doctors and demanded treatment….”
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“I was very nervous when I first posted, but everyone welcomed me with open arms and made me realise that actually, I was no longer alone”
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The use of the site pre-treatment is also something valued by people living in more isolated communities where the treatment support may not be as available as it could be. Specific posts dedicated to “preparing for treatment” list practical suggestions. Jena noted, “I got amazing advice from the site pre-treatment. I learned so much about how to cope with the side-effects once treatment started. I would have been so lost without the site.” For Justine, 48, from Victoria, the site provides “a critical resource for people on treatment”. Speaking about the difference between online and face-to-face support, she said, “I felt awkward in the face-to-face group. It wasn’t comfortable. Plus I had a small child and found it hard to be out of the house attending groups.” With only six weeks left of a valiant third attempt at treatment, Justine finds she visits the site “multiple times a day sometimes – you’re sitting around feeling terrible too sick to work, what are you going to do – watch TV?” As many know, hep C treatment invokes a unique anxiety that only those who have been there can understand. The preoccupation with the rise and fall of neuts, haemoglobin or viral load can invite glazed eyes from our nearest and dearest – even
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when they love and support us. But log on to the Hep C Australasia site and there’s no shortage of treatment veterans willing to discuss your bloods, or empathise with moodiness or irritability (also known as “riba rage”). “Whenever I am feeling down I log on and read the jokes or listen to the latest music clip that someone has posted,” Jena noted. “It always makes me feel better.” As Justine confirms, “You could have the best nurses and doctors available, but the people on the site are truly the only ones who really understand what you’re going through.” Careful to refer people for specific medical advice, site moderators and site members also offer cover for one of the gaps in the medical model. Essentially, a place to deal with the aftereffects of treatment that can be tough for some, or the disappointment of treatment failure that is tough for everyone. “I felt devastated, and abandoned by my treatment team,” writes Nonna of her experiences of serious health complications and treatment failure. “There was so much to deal with and no help – even if I didn’t get a response from someone right away just being able to write on the site was sometimes enough.”
feature Interestingly, none of the regular site users think that being able to write well is necessary for involvement in the site. Justine expressed, “I just find it so touching that those that have said the most poignant, moving and supportive things to me are ones whose spelling and grammar were patchy.” On the pluses of written communication generally, Dallo added, “writing means you can take your time, think about your response and edit if need be. Of course the risk of misinterpretation can still be high you can’t interject or qualify but all forms of communication have their up and downsides.” It can be easy to under-estimate the value of online friendships and such communication because of its seemingly limited form. You can for example write an intimate post and then “disappear” with no explanation. Your writing on the site could be “all-about-me” with none of the reciprocity, nonverbal cues or other social norms required for communication. Regardless, many regular users speak of online friendships that are both enduring and translate to every day life. Dallo reflects, “I’ve met some of my best friends online and have personally met quite a few of them.” For Nonna meeting her online friends face-to-face has been, “always a wonderful experience.”
Lastly, the site offers a chance to give back. Dallo has endured major health complications from hep C that he now uses to help others. “What I get from the site apart from the general camaraderie is the knowledge that the advice I give people will help ensure they don’t have my experience,” he said. Jena adds “I’ve recently become a moderator and its great to be able to give back to this wonderful forum – to be able to welcome new members and let them know they’re not alone.” Living with a stigmatised health condition affects us all in different ways but there is much that we all can relate to. As Justine says, “All of us on this journey, to some extent pretend...whether it’s telling our employer that we have ‘immune system problems’ or it’s telling lies left right and centre to protect ourselves.” Sadly, for people with hep C there’s often the need to keep a part of us hidden. The Hep C Australasia forum offers the opportunity to give that hidden part of ourselves a voice, and according to Justine, “Allow a group of other people who truly understand to come together and give it a great big hug.” • Charlie Stansfield is a freelance writer who regularly contributes to Hep Review magazine. She is a counsellor and coach with private practices in Hornsby and Chippendale, NSW. Contact her on violettara@yahoo.com
I’ve recently become a moderator and its great to be able to give back to this wonderful forum – to be able to welcome new members and let them know they’re not alone. www.hepcaustralasia.org Hep Review magazine
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Photo by Stephan Geyer via flickr.com
“none of the regular site users think that being able to write well is necessary for involvement in the site”
feature
MORE THAN 5-million AUSTRALIAN ADULTS NOW have HIGH CHOLESTEROL MILLIONS of Australians have heart disease and diabetes but don’t know it - the shock results of blood tests taken in a national health survey show.
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he Australian Bureau of Statistics uncovered Australia’s hidden disease problems when it tested blood and urine samples from 11,000 people taking part in its regular health survey.
“In New Zealand, 60% of the eligible population have had a heart and diabetes check in the past five years,” Heart Foundation chief Dr Lyn Roberts said.
A massive one in three Australians in the survey were found to have high cholesterol but only one in 10 knew it.
“Australia is a long way behind our neighbour, with some estimates showing only 5% of Australians are getting a health check by their doctor,” she said.
The blood tests showed up to 12% of Australians have liver problems. The Heart Foundation says the results show that Australia needs more routine checks to identify people at risk of heart attacks, strokes and chronic disease.
ection n n o c the What’s C? ans p e h Australi r h o f t i g w cent ncernin
re co d a re dings a ho haven’t ha n fi se the e s e Th Cw n increa ease. a p c e h lf e h s it it eart dis living w ck as hep C s and h isk factors e e h t c e b h lt ia gd hea nal r traditio evelopin y, poor risk of d addition to the sical inactivit igh hy in e and h ving esity, p r This is b u o s / s t e h r dp r ha weig of over king, high bloo eing obese o etes) b o , y m ll a -diab diet, s ddition known as pre A ased l. o r e t lso ith incre d (a w choles e d c e n t a e resist associa d reduc insulin betes is of fibrosis, an ia D 2 or Type progression is, steatos to treatment. se respon ou gloom m and tion (if y o c u o d d e r ll t Not a weigh ing and a small by healthy eat n is. It e v e , y ll d steatos d n a n Thankfu eight), achieve e io ammat t diseas rw are ove can reduce infl r manage hear fe. li e, event o ality of exercis lp to pr prove your qu e h o ls can a nd im betes, a ia d d n here, a et out t g : e g a ss hy. The me tive, get healt get ac 30
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Diabetes Australia chief Greg Johnson says other studies have found the rate of undiagnosed diabetes is even higher and urges all Australians to have a blood glucose test once a year. Australian Medical Association chief Dr Steve Hambleton said every adult in Australia should know their cholesterol level and everyone should be assessed at 45 years of age and earlier if there is a family history. • Abridged from news.com.au (5 Aug 2013) http://tinyurl.com/ldvrpu5
Photo by Elricis via flickr.com
Almost one million Australians have been told they have diabetes but the survey found another 231,000 have the disease but don’t know it and a further 700,000 are at risk.
feature
Telaprevir and Dietary Fat: An Update
With new hep C treatment drug telaprevir, the advice to consume 20 grams of dietary fat before each dose has been revised, reports Emily Greenfield.
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he range of effective treatment options for hep C has increased with the recent listing of telaprevir on the PBS. The listing will potentially benefit over 130,000 people in Australia – a significant proportion of the 225,000 Australians living with chronic hep C. It was recommended that telaprevir be taken within half an hour of consuming a meal or snack containing around 20 grams of fat. This advice was amended in April 2013. What is the latest dietary advice for Telaprevir? While telaprevir should still be taken within 30 minutes of consuming a meal or snack that contains some fat to help with absorption of the drug into the blood stream, it is no longer necessary to consume 20 grams of fat as a minimum. This is good news considering that fat is high in kilojoules, and eating too much fat can make it difficult to manage your total energy intake if you’re watching your weight. What does this mean in practice? When taking telaprevir, eat a nutritious meal or snack, avoiding low or reduced fat foods. Foods naturally low in fat include most fruits and vegetables, many breads, cereals, pasta, rice and legumes, and drinks such as tea and coffee. Combining these foods with naturally higher fat options such as milk, cheese, yoghurt, meat, fish, eggs, nuts and seeds will ensure the snack or meal provides some dietary fat which is suitable for the administration of telaprevir.
Does the type of fat matter? It’s essential to include some fat in your diet for general health and for the absorption of telaprevir. It’s also important to look at the finer detail of the types of fat you’re eating. There are three main types of dietary fat – monounsaturated fat, polyunsaturated fat and saturated fat. Monounsaturated and polyunsaturated fats are the “good fats” that have many health benefits including maintaining healthy cholesterol levels. Good sources of these healthy fats include oily fish, nuts and seeds, olives, avocado, and vegetable oils. Saturated fat is often referred to as the “bad fat”, as higher amounts of saturated fat in your diet can increase risk for heart disease. To keep your heart healthy, it is best to replace foods high in saturated fat with foods rich in monounsaturated and polyunsaturated fats, and eat minimal amounts of saturated fats found in fatty meat, butter, cream, full cream milk and dairy, coconut products, processed foods containing palm oil and deep-fried takeaway foods. Putting it all together • Take Telaprevir within 30-minutes after consuming a meal or snack which contains some fat. • Eat a balanced diet which includes a variety of foods from all five food groups at every meal. • Replace foods high in saturated fat with foods rich in monounsaturated and polyunsaturated fats. Emily Greenfield is a student dietitian at the Albion Centre
Photo by Stijn via flickr.com
For most peo ple, the recommende d daily amount of fa t is
• total fat: a bout 45-80g • of which, only about 1 6g should be sa turated fat Hep Review magazine
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feature
new us reforms aimed at curbing prison population Reversing years of tough Washington rhetoric, the United States Attorney General calls levels of prison incarceration “ineffective and unsustainable”.
Reversing years of toughening political rhetoric in Washington, Attorney General Eric Holder will now instruct prosecutors to side-step federal sentencing rules by not recording the amount of drugs found on non-violent dealers not associated with larger gangs or cartels. “Too many Americans go to too many prisons for far too long and for no truly good law enforcement reason,” Holder told the American Bar Association. “We cannot simply prosecute or incarcerate our way to becoming a safer country.” Holder also announced a review into sentencing disparities, pointing to a recent study showing black male offenders received sentences nearly 20% longer than whites convicted of similar crimes. “This isn’t just unacceptable, it is shameful,” said Holder. Since Richard Nixon declared the “war on drugs” in 1971, US prison numbers have soared to account for 25% of all the world’s prisoners even though it has only 5% of the world’s population.
...prosecutors [will] side-step federal sentencing rules by not recording the amount of drugs found on non-violent dealers...
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Mark Mauer, executive director of The Sentencing Project, an advocacy group for reform, described Holder’s proposals as a significant development which he hoped would stimulate debate and effect real change. “There have been huge developments in drug courts and drug treatment but mandatory sentencing has acted against those. This represents one way to open that up a bit and increase the potential scope of other options.” Ethan Nadelmann, executive director of the Drug Policy Alliance, also welcomed Holder’s proposals but said that they could have been put in place earlier to avoid the unjust suffering of thousands of Americans and their families as the prison population continued to grow. Nadelmann said: “There’s no good reason why the Obama administration couldn’t have done something like this during his first term – and tens, perhaps hundreds of thousands of Americans have suffered unjustly as a result of their delay.” “But that said, President Obama and Attorney General Holder deserve credit for stepping out now, and for doing so in a fairly decisive way.”
Eric Holder. Photo by mymag.com via flickr.com
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he US government took the first tentative steps toward tackling its 1.5 million-strong prison population by announcing that minor drug dealers would be spared the mandatory minimum sentences that have previously locked up many for a decade or more.
Photo by hangdog via flickr.com
feature
How does this relate to Australia?
Nadelmann said that national politics has shifted significantly, enabling support for Holder’s bold proposals. Republican governors and senators, such as Rand Paul of Kentucky and Mike Lee of Utah, have worked to allow judges to depart from mandatory minimum sentencing when circumstances merit and bipartisan bills are being introduced on the issue. “Today, a vicious cycle of poverty, criminality and incarceration traps too many Americans and weakens too many communities. However, many aspects of our criminal justice system may actually exacerbate this problem, rather than alleviate it,” he said. Holder said the new approaches – which he is calling the “Smart On Crime” initiative – are the result of a Justice Department review he launched early this year. The attorney general said some issues are best handled at the state or local level and said he has directed federal prosecutors across the country to develop locally tailored guidelines for determining when federal charges should be filed, and when they should not. The attorney general said 17 states have directed money away from prison construction and toward programs and services such as treatment and supervision that are designed to reduce the problem of repeat offenders.
Australian research has fou nd that there would be a wide range of benefits associated with lowering the total prison po pulation here. A Deloitte report released earlier this year showed that keeping peop le from entering prison, including diverting them to community rehabilitation, saved more than $110,000 per year, as well as providing sig nificant health and mortality outcomes. Th ese benefits were even higher amongst Abori ginal and Torres Strait Islander people who are subject to disproportionate rates of imp risonment in Australia. In terms of viral hepatitis, not only are there higher rates of hepatitis C amongst people entering prison, there is als o the risk of hep C transmission within prison , especially because of the failure to date of an y prison, in any Australian state or territory, to provide a prison Needle & Syringe Program (NSP). Hepatitis NSW continues to advocate for others for the introduction of a prison NS P within NSW. • Alastair Lawrie, Policy and Media Officer, Hepatitis NSW
Holder also said the department is expanding a policy for considering compassionate release for inmates facing extraordinary or compelling circumstances, and who pose no threat to the public. He said the expansion will include elderly inmates who did not commit violent crimes and who have served significant portions of their sentences. • Abridged from theguardian.com (13 Aug 2013) http://tinyurl.com/lgm6bdf Also see page 22.
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l
s g e L e h t f o k c l Ba
Inject too fast & the veins are unable to cope, and fluid escapes from the vein,
flow t hroug h the legs i s slow .
High-Risk Sites
Blood
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These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.
Safer Injecting Procedures
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Hep Review magazine
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As the flow of blood in the leg veins is upwards, towards the heart, it is important to inject the right way - with the needle pointing up towards the top of the leg.
The Hep Review harm reduction poster, Oct 2013 (#37). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au
d Abscesses an ns other infectio are a greater risk for those injecting into their legs.
Slow blood flow makes it ha rder for the bod y to heal injecti onsite damag e & fight off infection.
around the needle, causing a miss.
my story
mark’s story: waiting for the next best thing
I
am a 53-year-old man who’s been given 3-7 years to live. I have the most virulent strain of hep C and my body can’t take interferon. My only hope now is to live long enough to try a new treatment that is down the track. The irony of all this is that it has taken all these years to gain peace of mind and to like myself. At first, I was scared shitless but I’m not going to tell “my sad story”. Instead I’m living day-to-day and there’s no point in wallowing in self-pity. I wanted to write something uplifting and to somehow help others in my predicament. Please, people, try to stay positive. For what it’s worth, I’ve put together some tips that may help: One – Are you having trouble with the latest treatment which includes interferon, ribavirin and the so-called wonder drug on top of this? I found it almost impossible to swallow the amount of tablets. Try putting each tablet in a spoonful of yoghurt. Surprisingly, this did help me keep the tablets down.
Mark, Western Sydney. Photo by Paul Harvey
Two – If like me, treatment is unsuccessful, don’t dwell on your predicament but talk to people who understand hep C, and who have hep C.
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Three – With your doctor and specialist, ask questions. You deserve the same treatment and dignity as anyone else. Believe me, if I didn’t stand up for myself, and if I hadn’t talked to other people and found out about hep C, I would still be waiting for the triple therapy. I was one of the first people at my hospital to receive the triple treatment. Four – Don’t sit back and say nothing, but be respectful and firm in what you’re seeking. Keep reminding the doctors you want to know about anything that can be done for you. One last thing, if you’re on methadone, like me, you are still entitled to hep C treatment. Don’t let them tell you any different. I found most doctors think people on methadone are drop kicks and no-hopers. Don’t stand for this as you have the same rights as anyone else. Don’t let anyone tell you different. Try not to be too confrontational as this won’t help your cause. Do anything, within reason, your clinic nurses and doctors ask of you. Stay positive •
Mark, Western Sydney
advocacy
a Winter advocacy update Hepatitis NSW’s major advocacy activity during winter was promotional work around NSW Hepatitis Awareness Week, which started on Sunday 21 July and culminated on World Hepatitis Day, Sunday 28 July.
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he primary message for the NSW Hepatitis Awareness Week was encouraging people who have been living with hepatitis C for some time to see their doctor, assess their liver health and consider whether now is the right time to start treatment, especially following the Pharmaceutical Benefits Scheme (PBS) listing of telaprevir and boceprevir at the start of April. Other messages included promoting the Needle & Syringe Program (NSP) as the single most effective way to help prevent new hep C transmissions, encouraging people who may have injected in the past to get tested, and for young people to be aware of the risks involved in “backyard” tattooing and body piercing. And we specifically targeted regional areas of NSW for attention, to ensure our health promotion messages reached as broad an audience as possible. Hepatitis NSW’s focus on hep C during the week was complemented by Hepatitis Australia using World Hepatitis Day on the Sunday to raise the profile of hep B, in particular, and calling for
“people, try to stay positive... there’s no point wallowing in self-pity”
increased funding for testing and treatment of hep B from the Commonwealth Government under the National Hepatitis B Strategy. Overall, the promotional activities were a success, with 43 different media reports or engagements over the course of the week. Pleasingly, this included some great coverage in the Far West and Western NSW LHDs, as well as coverage of the launch of a hepatitis awareness group in the New England area. Our CEO, Mr Stuart Loveday, was involved in the launch of the new Liver Clinic in Lismore during the week, which received a lot of local press, and he also did a large number of radio interviews across the Sydney Metropolitan area. Despite this largely positive outcome, we are already thinking about ways to make sure NSW Hepatitis Awareness Week is even bigger in 2014. Stay tuned. In other news, in late July Hepatitis NSW lodged a second submission with the Australian Curriculum, Assessment & Reporting Authority (ACARA) regarding their development of the national Health & Physical Education curriculum. Unfortunately, while they have made some modest improvements surrounding blood awareness in their second draft, there is still a long way to go before the draft HPE curriculum provides a satisfactory level of detail about Blood Borne Viruses (BBVs) and vital harm reduction messages in relation to alcohol and other drugs. Finally, during August Hepatitis NSW lodged a submission to the NSW State Government as part of preliminary consultation about the development of a new State Health Plan. This was followed by a detailed submission in September. As you might expect, we highlighted the importance of NSPs, including improving access to NSPs in rural areas, and the need to provide adequate health services to people living with viral hepatitis across the state. This, with a particular focus on the needs of Aboriginal people living with or at risk of hep B or hep C. • Alastair Lawrie, Media & Policy Officer, Hepatitis NSW
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feature
Ancient dinosaur birds carried hep B
German surgeons operate using tablet
Sweden – Want to know something sad about the greatest-grandparent of all finches, crows and songbirds? She was carrying around the genes of hep B, the virus that today kills around 620,000 people each year worldwide.
Germany – The first of its kind liver cancer operation with the help of a tablet recently took place in Germany.
Some time around 82 million years ago, says Science News, “a hep B virus infected an ancient bird and got stuck in its genome.” Scientists looking at modern birds’ genes can see what amounts to a fossilised record of the ancient hep B virus.
The app was developed by Fraunhofer Institute for Medical Image Computing (MEVIS) in Bremen. The institute explains that the software can reconstruct the locations of blood vessels in the liver for each patient. Before an operation, surgeons can precisely plan how and where to place the scalpel to most effectively remove a tumour.
Photo
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Photo by o-DINOSAUR-BIRDS-facebook.com
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“With our app, the entire set of planning data can be shown directly on the operating table,” says MEVIS computer scientist Alexander Köhn.
“Using this function, we can virtually look into the organ and make the tumour and vessel structures visible,” says Prof Karl Oldhafer, chief of the department of surgery at the hospital in Hamburg. The reconstructed Mesozoic-era virus is remarkably similar to the hep B virus that infects people today, the team found. “We’ve had 82 million years of evolution, but they have the same proteins.” The researchers think that birds got hep B first, and then it later learned to live in mammals. In the study, the scientists say that learning about the virus’ long history can help us understand how it evolved. • Abridged from blogs.smithsonianmag.com (9 July 2013) http://tinyurl.com/nxdaztr
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Experts say that a liver cancer operation usually lasts many hours because the organ is difficult to operate. It hosts a branching vessel structure through which one and a half litres of blood flow every minute. If a surgeon makes a cut in an inappropriate place, this puts the patient at risk of severe blood loss. Until now, surgeons have had to memorise the precise location of important blood vessels in organs and where tumours could likely be found and need to be removed. • Abridged from neurope.eu (22 Aug 2013) http://tinyurl.com/ka5c47e
feature
Film fights the threat of hep B An Australian-Vietnamese short film which demystifies hep B myths and misconceptions recently premiered at Hoyts Wetherill Park.
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hange of Our Lives is a 60-minute soap opera which uses comedy and drama to tackle hepatitis B taboos. It’s the first Australian-Vietnamese soap drama made by the community and aims to raise awareness of the deadly virus. The film’s director and actor Maria Tran said raising awareness of hepatitis B was crucial to effectively stemming the tide of new infections, ensuring those affected got proper treatment and fighting social stigmas. “One in eight Vietnamese people have hepatitis B so they need to know about it — there’s also a lot of stigma having it in the Vietnamese community,” she said. “In the movie the main actor has hepatitis B so we wanted to show the community what the symptoms were, how he dealt with it and the treatment available to him.” The movie, which was shot in Cabramatta, has a cast and crew of more than 100 locals.
Actor Son Nguyen, 61, of Liverpool, enjoyed playing the Vietnamese president. “The Vietnamese community are afraid to talk about hep B,” he said. “My wife has it, so for me, it’s extremely important to raise awareness of it.
Image
“I learnt much more about the chronic side of it and how people who have it can still live normal lives. Good management is the key to good health.” Change of Our Lives was commissioned by Cancer Council NSW and Information and Cultural Exchange and was made over four months. • Abridged from liverpoolchampion.com.au (23 July 2013) http://tinyurl.com/lb8kmj3 Phone the Hepatitis Infoline for information about viewing the film.
Farewell, Prue
L
ong term Hepatitis NSW staffer, Prue Astill, has retired from the workplace.
Prue – our administration officer – leaves us after 18 years of service to our organisation, and to the NSW hepatitis community. Our staff, volunteers, members and suppliers will miss Prue’s consistent and and dependable efficiency and wit.
And like family, don’t hesitate, Prue, to drop in for a coffee or a Stones and a catch up. • Your workmates @ HNSW
Prue highlighted at her farewell function that she felt as though she was leaving a “family” that began back in the 1990s when our organisation was just a couple of years old. We’re sure that many readers will join us in wishing Prue all the best for her retirement.
Hepatitis NSW photo file library
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my story
JD’s story: Young, healthy and diagnosed with hep C
I
’m now 44, but those were the exact words I heard some 20 years ago when I was diagnosed with hep C at age 24. I had no symptoms and the thought had never crossed my mind that I may be living with a chronic blood disease that, if left untreated, can (at its worst) lead to liver disease or even liver cancer. It was a routine blood test, a general all-over check-up to make sure everything was in working order. I was at a friend’s house when I called the clinic to find out the results. “Yep, all good. Everything’s looking fine,” the nurse said down the phone. “Oh, what’s this down here,” she went on “you’ve tested positive for non-A, non-B hepatitis (now known as hepatitis C).” Those three words, “You’ve tested positive,” which were said so casually, instantly changed my life. My first thought was, “What does that even mean?” My second thought was, “Am I going to die earlier than if I didn’t have this thing?”
JD, Sydney. Photo by Paul Harvey
I scheduled a doctor’s appointment, hung up the phone and went into the next room and cried. All I knew was that I was now living with something.
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Although hep C is a serious condition, it’s slow acting and more often than not symptoms don’t show for many years. I was told that it would affect me later in life and treatment was something I could consider later down the track. Although I acknowledged the diagnosis I was in my twenties and had bigger priorities, so I put it to the side. I wasn’t experiencing symptoms, there was no awareness around hep C at that time and there didn’t seem to be any real urgency to get treated, so I got on with things. I travelled, moved to Sydney (originally from NZ) and started to explore my new stomping ground. It was over a decade later, in my late 30s, when I decided to get better acquainted with this condition I’d been living with for almost half my life. I began evaluating my life and my priorities. It was time for me to start taking care of my body; a body that had served me so well for 37 years; a body I had punished in my younger years living a fast and hard lifestyle; a body I now needed to pay attention to.
my story
I found a healthcare team that became an incredible support network. I began treatment and (long story short) was able to clear the virus five years ago in 2008, for which I am very fortunate and grateful. Science and treatments have come a long way. With the latest options – triple combination treatment – everyone has a high chance of achieving cure. There is still, however, a great deal of work to be done in terms of social attitudes and the stigma that, unfortunately, still exists around hep C. I’ve been pretty lucky, I’ve had a very supportive family and have been able to be open and honest with close friends. But I do consider my hep C diagnosis a secret part of myself and a dark part at that. Not because I think it’s a negative representation of me as a person, but because of the way it is viewed in society and the stigma attached to it. Being diagnosed with a condition like hep C forms such a huge part of your identity, yet there
is an overwhelming level of secrecy around it for fear of judgment, which can be crippling. On one occasion I was even told by a dentist’s office I would have to be the last appointment of the day so the equipment was “clean” for the other patients. This is completely idiotic – shouldn’t the tools be “clean” for everyone? – and shows that misunderstanding and ignorance around hep C is still rife in society. Although I knew this made no sense, I was made to feel different. Separate... not like “normal” clients. It made me feel like I was dirty. Dating is a whole other can of worms in itself – when is the right time to tell someone you have or once had hep C? The first date (too much, too soon), the second or third? I’ve experienced both very understanding and positive reactions which have been hugely comforting, but there have been instances where the “fear factor” and lack of knowledge have reared their (ugly and disappointing) heads, and this has not ended well. My message to people who think they may be living with hep C or who may be diagnosed but too scared to seek help or medical assistance: “knowledge is power”. There’s so much support available these days and treatments are advancing even more so there is certainly hope (and I’m proof of that!). You don’t need to carry the fear that others might have, for as many people that don’t understand (and I believe this comes down to fear and lack of knowledge) there are as many that do and care and are here to help. Building a support network of friends, family and healthcare professionals is key. There has never been a better time to have your liver health checked. The earlier testing, diagnosis and treatment can get underway the better. Remember, you are not alone. • Abridged from www.mamamia.com.au (4 Aug 2013) http://tinyurl.com/qdmhnsn Want to talk about your hep experience? Phone the Hepatitis Infoline – 1800 803 990
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promotions
Live Well recruiting
Book early for your place in the next Central Coast...
Hep C: Take Control Program Want to meet other people with hep C? Want to learn what you can do to stay healthy and get more out of life?
Our Live Well program goal is to help people achieve better health outcomes through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the health care system. We welcome anyone who is living with hep C and is looking for ways to improve their health and well-being. Our group workshops are free, confidential and suitable for everyone’s needs. We have also invited a number of experts in diet, exercise, alcohol and other drugs, mental health and treatment to be guest speakers. • Duration: One weeknight each week for six weeks.
In a supportive environment, participants will work together over four weeks to share and develop skills to better manage their hep C and improve their symptoms. Some topics to be covered are: • Dealing with stigma and discrimination • Better management of hep C and its effects on your life • Treatment and dealing with side-effects • Making healthy lifestyle changes
• Who: You and other people with hep C • Where: Surry Hills (near Central Station)
live well
The course will be facilitated by Jennie Hales and Amanda Burfitt, from the Central Coast Local Health District. There will be an emphasis on respecting the privacy and confidentiality of all participants. For more info about Take Control, please phone Jennie on 4320 2390 or email: jhales@nsccahs.health.nsw.gov.au
These courses are held at Wyong Central 38A Pacific Hwy, Wyong 42
www.hep.org.au
Photo by Leonard John Matthews via flickr.com
Are you living with hep C and looking for ways to maximise your health? live well can help Come join our group, meet others who have hep C and get information that can help you improve your health and wellbeing.
Interested? Contact Fungi on P: 9332 1853 or E: ffoto@hep.org.au ALL GROUPS ARE CONFIDENTIAL AND FREE
promotions
hep review magazine photo call A picture tells a thousand words, the old saying goes, and we really want your pictures in Hep Review magazine. We want our “voices” to ring loud in Hep Review and for many years we’ve recruited people’s personal stories. We want to go further, though. It makes sense to get pictures of us and our health workers and our clinics into our magazine. Who wants to see images found on the internet which could be from anybody, anywhere (often overseas)? If you like taking photos and have a decent camera, why not become a roving hep C photographer? We’ll pay $50 for each image that we publish in Hep Review and $100 for Hep Review cover shots.
Image / Pa
ul Harvey
Does it sound too easy? Well, there is a bit of work involved. We want pictures of people and this means we need permission sign-offs from the people in the photos. We also need high-definition images; pictures that are between 2 to 5MB and even bigger for covershots. • Further conditions apply. If you’re interested, please contact Paul Harvey on 02 9332 1853 or pharvey@hep.org.au Also see our call for personal stories, page 6.
Would you like to help with hepatitis C research? You can if you have recently contracted hep C Research Study Treatment of recently acquired hepatitis C virus infection (ATAHC II) The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) is running a hepatitis C study for patients who have acquired hepatitis C recently (in the last two years). ATACH II aims to explore the best treatment strategy for patients with recently acquired hepatitis C infection. You can choose to receive treatment or not if you decide to help. There are clinics participating in the study in Sydney, Melbourne, Brisbane and Adelaide. Contact Barbara Yeung at the Kirby Institute on 02 9385 0879 or byeung@kirby.unsw.edu.au to find out about the study or to find your nearest site. The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee
Hep Review magazine
Edition 82
December 2013
43
promotions
Hepatitis B: Breaking Down the Barriers The Rural Health Education Foundation is an independent, nonprofit organisation that provides health education to rural and remote health professionals and their communities. Here, they showcase one of their projects – one that focuses on hepatitis B.
T
he Rural Health Education Foundation is involved in the production of television programs to support healthcare professionals and community members to reduce the impact of hepatitis B on all Australian communities. The programs include a panel discussion with leaders in the field of hepatitis B highlighting issues of prevalence, screening, vaccination and treatment regimes. This is complemented by case studies and patient stories. High risk populations; Aboriginal and Torres Strait Islander communities, migrant communities, and people born in high prevalence regions of the world, prison populations, and people who inject drugs are identified and models of care to improve health outcomes are discussed. One important element is the social stigma associated with the diagnosis of hepatitis B and the way in which this influences the capacity for the success of screening interventions. The complications of this viral infection can have substantial implications on lifestyle, health and wellbeing. Highlights of the programs include the educational avenues being used in communities to support people who have hepatitis B. There are interviews with those who share their personal struggles as they try to manage their health, work, family and community concerns. The production of these programs has been funded by the Australian Government Department of Health and Ageing. The panel program and case studies were initially broadcast on the Rural Health Channel (VAST satellite channel 600) and are available to view on the Foundation’s website.
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A comprehensive DVD resource will be available at the end of November, 2013. This can be ordered through the Rural Health Education Foundation website www.rhef.com.au/hepB. • For more information, contact: Rural Health Education Foundation (02) 6232 5480 or rhef@rhef.com.au
44
www.hep.org.au
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Background image by Rice and D / Flickr
Image via realfoods.co.uk
Want to alternate your alcoholic drinks with something soft but still with a bit of bite? • Soda water with a squeeze of lemon • Tonic or soda water diluted with fruit juice and bitters. Hep Review magazine
Edition 82
December 2013
45
hep chef
Apple Cinnamon Bircher Muesli Step into summer with this fresh and healthy and delicious plant based breakfast. Once you have tasted the clean flavours of this uncooked muesli, any desire for the heavy, meat-laden breakfasts of the colder months will become a distant memory. Although it sounds fancy, bircher muesli is incredibly quick and easy to prepare and several batches can be made in advance if you have a busy week ahead. Eating on the run? Just combine your ready-made bircher muesli with some yoghurt, fruit and nuts in a lidded container and throw into your bag with a spoon. You never need to skip breakfast again! Oats are rich in soluble fibre and have a low glycemic index (slow-release energy), keeping you fuller for longer and helpful for reducing blood cholesterol. You can easily substitute the oats with another grain such as quinoa flakes or rolled millet for a gluten free option.
Makes 2 serves 1 cup rolled oats (uncooked) ½ cup grated apple ¼ tsp cinnamon ½ cup low fat milk ½ cup water 2 tbsp unsalted mixed nuts ½ cup low fat natural yoghurt Chopped strawberries or other fruit, to serve Before you go to bed, combine the oats, cinnamon, grated apple, milk and water in a bowl and stir to combine. Cover and put in the fridge overnight. In the morning, throw in some nuts and top with yoghurt and fruit for a simple and nutritious breakfast. • This recipe was provided by Emily Greenfield, Student Dietitian, The Albion Centre. Do you want to see your recipe here? Simply send it in to us – see address on page 67.
Image by Snarkattack, via Flickr.com
Low in fat, high in fibre and packing a serious protein punch, this recipe is a delicious and nutritionally balanced breakfast for any day of the week. Whether it’s breakfast on the go or a relaxed affair at home, bircher muesli is the perfect way to start your day.
Ingredients
46
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Are you affected by hepatitis and looking for support? Then Let’s Talk.
feature
Hepatitis NSW has a free counselling service offering face to face, telephone and online sessions. We have a team of qualified counsellors and a psychologist, all with specialised knowledge in hep C. If you want to talk we have someone who will listen and work with you to start creating a better way of living. For more information call the Hepatitis Helpline on 1800 803 990 or email kfanton@hep.org.au
Let’s Talk
Hepatitis NSW Counselling Service
Certain physical and psychological profiles predict better treatment outcomes across a range of medical conditions. Little is known of how these factors predict treatment outcomes in hep C. The primary objective of this research is to increase understanding of individual profiles that are associated with better hep C treatment outcomes. The study is open to people preparing for hep C treatment and participants are being sought from within Australia or from other countries. Information provided is completely confidential and you have the right to withdraw from the study at any time. For more information and if you have any questions regarding this research please contact Mr Simon Langston at slangsto@bond.edu.au Hepatitis C Treatment Outcome Study @ Bond University http://hepcstudy. hsstechnology.bond.edu.au
A shoutout from the hepCaustralasia online PEER forum I’m “Dee”, one of the forum moderators. What we love about the forum is we have a place to go to where everyone is in the same boat and we can talk freely about our experience without having to disclose to the wider world. And most importantly, it provides valuable advice and support for those of us on treatment. It is a long hard road but made a lot easier by having sympathetic, like-minded people to talk to. Image by Cedric’s pics / flickr
The Hepatitis C Treatment Outcome Study
Join us at: hepcaustralasia. org
Hep Review magazine
Edition 82
December 2013
47
feature
HELLO HEPATITIS INFOLINE I’ve just come into prison for the first time, and I’m worried about keeping healthy. I know a lot of people in here have hep C, and I want to know how to steer clear of it. You’re right to think that hep C is a big problem inside. In 2009, around 30% of people in NSW prisons had been exposed to hep C – yet on the outside it’s more like 1%. The good news is that hep C is hard to catch in most situations. Because it’s only spread by blood-to-blood contact, you can’t get the virus by sharing food, sharing toilets, kissing or most other everyday contact. It’s also not usually passed on through sex, unless sexually transmitted infections are involved or there’s blood-to-blood contact. In Australia the most common way to get hep C is through shared drug injecting equipment: needles, syringes and anything else that’s used when you’re injecting. That’s a tricky issue in prison because we know that prisoners can get drugs to inject, but getting sterile injecting equipment can be much harder.
important to be aware of blood in general: hep C could get passed on in a fight, for example, if there are open cuts and blood. So what can you do to avoid hep C? Well it sounds simple but to avoid hep C, you need to avoid the activities we’ve just described. If you use drugs inside, try not to inject them. If you want a tattoo or a piercing, it’s best to wait till you are released. Try to make sure other people don’t use your stuff (toothbrushes and razor blades), and try to avoid other people’s blood where you can. If you knock out blood-to-blood contact, then you can avoid catching hep C or avoid passing it on yourself. If you do choose to inject inside, then you can clean your equipment with FINCOL. It is a disinfectant freely available in all prisons in NSW. Using it to clean your equipment isn’t perfect. Even if you do it correctly there can still be tiny bits of blood present – and you’ve got to do your cleaning in secret. If you’re going to use inside though, it’s the best you can do. To clean injecting equipment in gaol:
In reality, if you’re injecting inside you’re probably using needles and syringes that have been used by lots of other prisoners. That makes injecting in prison particularly risky in terms of hep C.
1. Fill a container with cold tap water and flush the fit out at least three times. Squirt the water down your sink or into a drain – don’t put it back into the container.
It’s also possible to get hep C through tattoo and piercing equipment if it’s not sterile. Again, you’re very unlikely to be able to get sterile equipment in gaol, so prison tatts and piercings are especially risky.
2. Take the fit apart and soak it in FINCOL for at least five minutes.
Those are the two main risks for hep C, but there are a couple of others to bear in mind. Toothbrushes, razor blades and tweezers can get blood on them, so it’s best not to share any of those. It’s not common for someone to get hep C that way, but it can happen. It’s also really
HEPATITIS 1800 803 990 48
www.hep.org.au
If you’d like more information about staying healthy on the inside, see Health Survival Tips, ED74, page 36 http://tinyurl.com/mo5e986. Also, don’t hesitate to phone the NSW Prisons Hepatitis Infoline. Freecalls: on prison phone enter your MIN, enter your PIN, press 2 for common calls list, press 3 for Prisons Hepatitis Infoline. • By Fungi Foto, Hepatitis NSW.
INFOLINE INFO, SUPPORT, REFERRAL
3. Put the fit back together and flush it with cold fresh tap water at least three times. This time, make sure you shake the fit when you’re flushing it to get rid of the FINCOL.
FREE CALL FROM LANDLINES Interpreter service available
www.hep.org.au
“Hello Hepatitis Infoline” is brought to you by the Hepatitis Infoline team. The questions are based on genuine calls but some details may have been changed to ensure caller anonymity.
Please tell us what you think about Hep Review magazine below or go to http://www.surveymonkey.com/s/KDJLGPY You’ll go in a draw to win a $50 gift card (see conditions below*) After reading this edition, I feel I know more about hep C.
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* Your feedback will help us develop a better magazine. For each edition we will draw one winner from all entries received who have provided a name and contact number. This offer is for NSW residents only. One entry per person. We use Coles/Myer gift cards.
Hep Review magazine
Edition 82
December 2013
49
To send:
• Carefully rip or cut out this page
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• Or fax back both sides of this form to 9332 1730.
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Your feedback will help us continue to develop a better magazine – for you!
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male
trans/Inters
...............................................................................
m. Other (please describe)
l. Working in AOD (alcohol & other drugs)
k. Working in NSP sector
j. Person who used to inject drugs
i. Person who currently injects drugs
h. Community or youth worker
g. GP or allied health care worker
f. Ex-prisoner
e. Current prisoner
d. Person with hep B
c. Partner, family or friend of someone with hep C
b. Person who has been cured of hep C
a. Person with hep C
7. Please describe yourself (circle as many as you want)
.............................................................................
6. Are you Aboriginal or Torres Strait Islander?
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5. Is a language other than English spoken at home?
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4. For the purposes of the prize draw, what is your first name and your contact phone number or, if you are currently inside, your MIN? (see conditions, page 49)
3. What is your postcode? (or prison code?) ............................................
2. What is your gender? female
1. What is your age?
www.mhahs.org.au
Hep Review magazine
Edition 82
December 2013
51
www.mhahs.org.au
52
www.hep.org.au
keyhole to our work Drug and Alcohol Treatment Inquiry Reports In August, the NSW Parliamentary Inquiry into Drug and Alcohol Treatment handed down its Final Report. Alastair Lawrie reports on what it said.
T
he Inquiry Committee had been asked to look at the general issue of drug and alcohol treatment across the state, including funding levels, as well as specific provisions of a Bill proposed by Upper House MP Mr Fred Nile of the Christian Democrat Party. This bill sought to expand greatly the application of “compulsory treatment orders” for people with a dependence on illicit drugs, as well as to allow for compulsory naltrexone implants in some circumstances. Hepatitis NSW made a lengthy submission to the Inquiry back in March, arguing strongly against compulsory treatment orders and specifically against the use of naltrexone implants. Other organisations in the sector did the same. In its Final Report, the Committee made 7 broad recommendations covering a range of alcohol and other dug issues. There were some positives, including: • The Committee did not make any recommendations in favour of a further expansion of compulsory treatment orders, and • In Recommendation 3, the Committee called for the NSW Government to “consider expanding the availability of naloxone and
Unfortunately, the Committee also made other recommendations which were less-thanwelcome. In particular, Recommendation 4 states: “That if naltrexone implants are approved for use by the Therapeutic Goods Administration, that the NSW Government fund a randomised control trial comparing naltrexone implants with other licensed treatments used to treat opioid dependence, if such a trial is not successful in securing funding from the National Health & Medical Research Council.” This is obviously not an ideal outcome, considering the range of negative outcomes associated with naltrexone implants, including increased risk of overdose. It is now up to the NSW Government to determine its response to the Committee’s recommendations, including whether to support this trial. Hepatitis NSW certainly hopes that they do not. We’ll keep you posted in future editions of Hep Review magazine. • Alastair Lawrie, Policy and Media Officer, Hepatitis NSW
Hepatitis factsheets
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the provision of training to relevant healthcare professionals to prevent opioid overdose fatalities.”
ve a ered to ha ion Act e consid hep C ar iscriminat D ith tiw An le Peop NSW under the disability or to harass (1977). t the law it is agains irly because: fa says that t un Ac C e p Th he eone with inks they treat som meone th p C or so on has he rs pe A • meone have it. past, or so C in the had hep . on st rs pa pe e in th • A ey had it p C in thinks th ht get he rson mig inks a pe th ne eo • Som . work the future friend or hep C. relative, t to have on has a is though or s • A pers ha who ue ag lle co
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eone ainst som is ination ag ainst the law. Th l, discrim C is ag p In genera he ve ey ha th e us beca ple t, for exam n they includes: tion ploymen he pes of em ying for a job, w is treated Introduc ty t ne os eo m m so appl a job. • in rs when e same meone is they are leaving ation occu her people in th rticular when so or when Discrimin a pa an ot e in a job use of a m getting urably th ar ca fro . vo C d be fa p s te ss le ance preven having he ey have r circumst meone is such as cause th so , n be ve d or simila to he ha w se ty is • ristic they ion is n or dism so have a legal du ies characte scriminat promotio lit related di ployers al ecial faci virus, m C e sp p (E th y . he g C an r in p s fo he with ract the The basi ployees ar of cont use (the them do oples’ fe provide em they need to help cting drug ). oyer usually pe ards inje Australia the empl es ’t cause titude tow risk behaviour in or servic at on r w ei it th as or ng sion lo y is er m as rg ns ’). b, jo dentist su s that hardship primary tra pes of attends a on justifiable
Hep Review magazine
Would you feel awkward about other people finding out about your hep C...and what they might do with that information? We’ve recently updated our Discrimination factsheet. To view the complete four page factsheet and our range of 40 other factsheets please go to http://tinyurl.com/3f2gx2p Also see our article, Dealing with West Coast Discrimination, in ED81: http://tinyurl.com/nwulzsw
Edition 82
December 2013
53
promotions
hep C okmarks bo
O
ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
www.hep.o rg .a u –
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Infoline (on 1800 803 990).
join us
sms
0404 440 103
TRANSMISSION@HEP.OR G.AU
• Hepatitis NSW
Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
www.hepatitisc.or
g.au
or call the
Hep C Helpline (see over)
54
www.hep.org.au
Don’t discr
iminate
Hepatitis C is hard to catch.
Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. People with hep C come from all backgroun ds. accurately ass You can’t ume anythin about them. g
It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid forks. and bloodknives tosame blood contac t wit h other people, you are not at risk . It is transmitted when So if infected blood from one hep you find out someone C, sup the port them and has person gets into don dis ’t crim inate agains bloodstream of someone t them. else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)
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The new trea tment for he p interferon + ribavirin + an C genotype 1 involves taking pegy other drug (e Taking this lated ither bocepr treatment m evir or telepr eans you ha clearing the evir). hep C virus ve an in creased ch and your trea ance of tment time is likely to be sh orter.
1800 803 990 free call from landlines
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26
s: 0404 440 103 ph: 1800 80 3 990 e: transmis sion@hep. org.au
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December 2013
55
promotions
feature
e
E vic E Ser R lth F Hea
SW N
New hep B education tool for GPs ASHM and Cancer Council NSW have released a new online learning module for GPs, focusing on Australia’s fastest increasing cause of cancer death – liver cancer. Liver cancer, most of which is caused by viral hepatitis, is now in the top 10 causes of cancer death and most people diagnosed with liver cancer in Australia die within one to two years – many in the first month after diagnosis.
Do you want to get healthy? See inside to find out how.
Dr Ben Cowie said there are now an estimated 218,000 Australians who have chronic hep B, approximately 1% of the population. “If we do not improve access to diagnosis, treatment and care in the community, deaths from viral hepatitis-related liver cancer in Australia will continue to increase faster than any other cause of cancer death,” he said. The new online learning module is RACGPaccredited and designed to provide GPs with an overview of who to test, how to test for hepatitis B and what to do about the results. “GPs are essential in reducing the disease burden in ‘high risk’ communities,” said Dr Monica Robotin, Medical Director at Cancer Council NSW. “Advances in hepatitis B management can more than halve the number of people progressing to end stage liver failure or liver cancer,” she said. GPs should visit www.gplearning.com.au to access the free four-part learning activity, entitled Preventing liver cancer through diagnosis and management of hepatitis B. It takes about one hour to complete in total, and it can be done in four 15-minute sessions.
www.gethealthynsw.com.au
Hep C treatment is more effective if you’re in better shape: not carrying too much extra weight, and not tending towards type-2 diabetes. With better treatment options on the horizon, perhaps now is a good time to ask yourself, Do I want to get healthy? If the answer is yes, give the gethealthy campaign a call.
56
www.hep.org.au
• ASHM media release, 8 July 2013.
An invitation to join or rejoin Hepatitis NSW
working towards a world free of viral hepatitis
You can join or rejoin Hepatitis NSW online at www.hep.org.au OR by filling out the membership form below. Please complete the appropriate section (A or B or C) See the table at the bottom for membership types. Are you a new or an existing member? (please tick one) I want to join for the first time I am renewing my membership I currently receive Hep Review but want to become a member
PAYMENT SECTION Hepatitis NSW membership ABN 96 964 460 285 All Hepatitis NSW membership fees are GST exempt. Membership fees may be tax deductible for health professionals. PAYMENT BY CHEQUE OR MONEY ORDER:
Please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form in the reply-paid envelope supplied.
I’m not sure - please check your database
PAYMENT BY CREDIT CARD:
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Please complete card details below and include day time phone contact.
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Please quote name or invoice number in transaction description and post this completed form to our postal address, below.
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Your donation is also warmly welcomed. Donations over $2 are tax deductable. Please record the amount here.
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Hepatitis NSW Hepatitis Infoline 1800 803 990 www.hep.org.au
P: 02 9332 1853 | F: 02 9332 1730 | E: hnsw@hep.org.au PO Box 432 Darlinghurst NSW 1300 | Level 4, 414 Elizabeth St, Surry Hills NSW 2010
Hep Review magazine
Edition 82
December 2013
57
research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on viral hepatitis. These research update pages attempt to meet this need. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Infoline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers. Our online version of Hep Review is at www.hep.org.au and contains live web links to the various sources shown in blue text. Another great reason to go online for your Hep Review magazine.
Quick links from BBV News
Hep B and vitamin D
The Australian Needle and Syringe Program National Data Report presents national and state/ territory data for the period 2008 to 2012. http:// tinyurl.com/m5nx77o
Germany – While there has been evidence in prior studies associating vitamin D deficiency with hepatitis C infection, the study from Frankfurt is the first to show that patients with high hepatitis B viral load are more likely to have low levels of vitamin D.
Check out the Recommendations for the Management of Hepatitis C Virus Infection Among People Who Inject Drugs http://tinyurl.com/kk25tyb Putting Together the Puzzle. Want to know more about working well with injecting drug users? Want strategies to improve engagement? This workshop utilises interactive activities and reallife examples all underpinned by contemporary research evidence to improve quality service access and ultimately reduce blood borne virus transmission. To find out more, please contact Fiona at fionap@nuaa.org.au or call (02) 8354 7300
In addition, patients who were hepatitis B antigen (HBeAg) positive had lower levels of vitamin D than HBeAg negative participants, the researchers found. They said their hypothesis was further bolstered by the finding of inverse seasonal fluctuations between vitamin D and HBV DNA serum levels. • Abridged from medicalobserver.com.au (18 June 2013) http://tinyurl.com/n82o636
Above separate articles are abridged from BBV News, via j.johnson@latrobe.edu.au If you don’t have internet access, please phone the Hepatitis Infoline for more information on the above studies.
Virology update
Headlines from the latest Australian Hepatitis Research Review: Research from Germany reports significant improvement in neurocognitive function after antiviral treatment in patients with chronic hepatitis C virus (HCV), indicating an added benefit associated with antiviral therapy for HCV.
weeks of diagnosis are much more likely to achieve sustained virological response than those who start treatment after 48 weeks. The study authors therefore recommend starting treatment immediately in patients with these unfavourable genotypes.
Another paper reports that patients with acute HCV infection who have the IL28B CT or TT genotype and who start treatment within 48
• Keep up-to-date on virology research. Subscribe to Research Review, edited by Professor Stephen Riordan ... http://www. researchreview.com.au/
58
www.hep.org.au
research updates IL28B, genotypes, sex linked to clearance
Telaprevir safe, effective, among older people
Australia – Women and people with genotype 1 and/or IL28B CC were more likely to experience spontaneous clearance of acute hep C infection, a recent study has suggested.
Japan – Advanced age did not impact the efficacy of triple therapy with pegylated interferon, ribavirin and telaprevir among patients with hep C genotype 1b, a recent study has suggested.
Researchers evaluated the incidence of spontaneous clearance among 632 patients with acute hep C across nine international cohorts. Spontaneous clearance was defined as two consecutive test results, four or more weeks apart, indicating undetectable HCV RNA levels. Of 542 patients with genotype data, 49% had IL28B CC genotype, while 55% had HCV genotype 1.
In a prospective study, researchers evaluated 120 patients with chronic hep C genotype 1b, including 64 participants aged older than 60 years. All patients received peginterferon alfa2b, ribavirin and telaprevir for 12 weeks, then 12 weeks of peginterferon and ribavirin. During prior therapy 53% of participants had relapsed, 22% were treatment-naive, 20% were prior non-responders and 3% had an unknown prior response.
Investigators said associations with IL28B CC and HCV genotypes were more pronounced and had the highest clearance rates in females with IL28B CC genotype and HCV genotype 1. IL28B CC and HCV genotype 1 were independently predictive of clearance among females, while only IL28B CC genotype was among males. Grebely J. Hepatology. 2013;doi:10.1002/ hep.26639. • Abridged from healio.com (9 Aug 2013) http:// tinyurl.com/keolnzx
“This study shows there is no impact by age on the virological outcome of telaprevir-based triple therapy for genotype 1b chronic hep C,” the researchers concluded. “We found that older patients achieve a better virological outcome by TVR-based triple therapy than with the traditional dual therapy. IL28B genotyping and EVR indicate the potential to achieve an SVR in these difficultto-treat older patients.” • Abridged from healio.com (30 June 2013) http://tinyurl.com/pb7sjht
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research updates Anti-HBV effect of Chinese herbal medicine
Mental health workers knowledge and attitudes
China – Traditional Chinese herbal medicine (TCHM) has been widely used in the treatment of chronic hep B (CHB) in China. To understand the detailed antiviral effect of TCHM against HBV infection, we systematically analysed the antiHBV effect of individual Chinese herbs on the basis of research published from 1995 to 2012.
Australia – People with mental illness are at higher risk of acquiring hep C than the general population. This study assessed knowledge and attitudes towards hepatitis C and injecting drug use, and the impact of these on care and support for people with hep C and a mental illness.
This review summarises and analyses the studies on the anti-HBV effect of individual TCHM in cell and animal models, providing potential perspective in the understanding of TCHM in the treatment of hepatitis B and the development of new anti-HBV drugs from TCHM. • Abridged from ncbi.nlm.nih.gov (1 July 2013) http://tinyurl.com/mdg56tt
Epidemiology and natural history of hep C Australia – Worldwide, an estimated 130170 million people have HCV infection. HCV prevalence is highest in Egypt at >10% of the general population and China has the most people with HCV (29.8 million). Differences in past incidence and current prevalence, together with the generally protracted nature of HCV disease progression, has led to considerable diversity in the burden of advanced liver disease in different countries. Around 25% of patients with acute HCV infection undergo spontaneous clearance, with increased rates among those with favourable IL28B genotypes, acute symptoms and in women. The remaining 75% of patients progress to chronic HCV infection and are subsequently at risk of progression to hepatic fibrosis, cirrhosis and HCC. Chronic hepatitis C generally progresses slowly in the initial two decades, but can be accelerated during this time as a result of advancing age and co-factors such as heavy alcohol intake and HIV coinfection. • Abridged from ncbi.nlm.nih.gov (Sept 2013) http://tinyurl.com/lza894z
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Online surveys were conducted with 117 support workers around Australia from a communitybased mental health organisation. Surveys collected data about support workers’ knowledge of hep C and their attitudes towards people with hep C and people who inject drugs. The surveys also investigated support workers’ level of comfort and perceived capability in working with clients who have hep C and a mental illness, and their feelings about recovery for these clients. Data suggests that support workers underestimated the potential prevalence of hep C among their client base. There were also significant gaps in knowledge of transmission and treatment of hep C. Higher knowledge of hep C was related to more positive attitudes towards people who inject drugs. Support workers’ attitudes towards people with hep C and people who inject drugs did not influence their feelings about working with someone who has hep C and a mental illness. However, support workers with more negative attitudes towards people who inject drugs tended to feel less comfortable about working in the home of a client with hep C and a mental illness. Mental health counselling is often home-based. Hence, there is a need to upskill support workers to enable them to feel more comfortable working with mental health clients who have hep C. Targeted interventions to increase hep C knowledge and promote positive attitudes towards hep C and injecting drug use would be beneficial. • Abridged from http://tinyurl.com/klkbnst and from http://tinyurl.com/kbd8hwj
research updates Risk of transmission very low in monogamous heterosexual couples
Psychiatric patients excluded from treatment
USA – The risk of sexually transmitting hep C infection to a long-term monogamous heterosexual partner is very low, averaging just about 1% per year. That risk level works out to a transmission rate of about one in every 190,000 sexual contacts, Dr Norah Terrault and her colleagues reported in the April issue of Hepatology. “Our results provide a basis for specific counselling messages that clinicians can use with their patients... [that] support the current national recommendations that couples not change their sexual practices if they are in a monogamous heterosexual relationship,” the authors said. • Abridged from obgynnews.com (25 April 2013) http://tinyurl.com/lrhm9xo
Australia – Hep C patients with psychiatric disorders are often excluded from treatment for no good reason, Australian experts say. Their review of the psychological, lifestyle and social predictors of hep C treatment response found that patients with psychiatric illnesses had comparable rates of sustained virological response (SVR) to controls, as long as they continued psychological therapy. And yet despite these findings, psychiatric patients were often excluded from treatment and trials, the authors from Westmead Hospital and the University of Western University noted. The investigators also found that the effect of alcohol on SVR depended on the amount consumed and patients who drank less than three drinks a day were just as likely to attain SVR. The impact of diet, exercise and socioeconomic status on SVR rates was unclear, they said, although treatment non-responders tended to consume more polyunsaturated fatty acids, fats and carbohydrates.
Hep C among people with bleeding disorders The Netherlands – Our aim was to assess the long-term occurrence of adverse liver-related events in people with inherited bleeding disorders. The occurrence and determinants of endstage liver disease (ESLD) were assessed using retrospective data of 863 HCV infected patients with inherited bleeding disorders from the Netherlands and the UK.
With a rise in morbidity and death from the hepatitis C virus expected over the next decade, there was “an urgent need to treat as many individuals as possible to ease the future burden on society,” the authors concluded. • Abridged from gastroenterologyupdate.com. au (23 Apr 2013) http://tinyurl.com/kj3lwqv Abstract: http://tinyurl.com/nyxu2hf
Of the 700 patients with chronic HCV, 90 (13%) developed ESLD. Determinants of ESLD were age at infection, HIV coinfection, history of alcohol abuse and successful antiviral treatment. Of the 487 patients who were still alive at the end of follow-up, 49% did not undergo optimal conventional antiviral treatment. After over 30 years of HCV infection, ESLD occurred in a significant proportion of patients with inherited bleeding disorders. HCC appears to be an increasing problem. There is a significant potential for both conventional and new antiviral treatment regimens to try and limit ESLD occurrence in the future. • Abridged from journal-of-hepatology.eu (25 Jan 2013) http://tinyurl.com/lsq8w32
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pharmaceutical treatment Triple combination treatment
Standard combination treatment
Triple combination treatment for hep C consists of either Incivo (telaprevir) or Victrelis (boceprevir), taken with standard combination treatment (peginterferon alpha and ribavirin).
Standard combination treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily. Standard combination treatment lasts between 24 or 48 weeks (depending on a person’s genotype and liver condition) and gives a 50-80% chance of cure (depending on a person’s genotype).
This new treatment is for people aged 18 years and over who have hep C genotype 1 and compensated liver disease (no serious liver damage). Triple combination treatment generally lasts between 24 and 48 weeks (depending on a person’s treatment history, liver condition and/or response) and gives a 70-80% chance of cure. Treatment duration is generally shorter under triple combination treatment compared to standard combination treatment. Studies show there is increased risk of anaemia and skin rash, and other side effects. These will be explained in detail by your treatment team and will be carefully monitored by them.
Subsidised combination treatment for people with chronic hep C is available to people (aged 18 years or older) who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive. Contraception: Women of childbearing age undergoing treatment must not be pregnant or breastfeeding, 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 partner). Female partners of men undergoing treatment must not be pregnant. Duration and genotypes People with genotype 1, see Triple combination treatment, left. For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring People with genotype 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. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.
For more detailed information on current treatment options, see our Treatment Overview factsheet... http://tinyurl.com/bqbrwr9
CAUTION Treatment with interferon has been associated with depression and suicide in some people. If you have any history of suicide ideation or depressive illness, talk to your treatment team. They will be able to provide additional treatment monitoring and support. A potentially serious side-effect of ribavirin, telaprevir or boceprevir is anaemia (an imbalance of red blood cells). During treatment your blood is monitored closely, especially in the first few weeks, and if problems arise, doses of your treatment drugs may be lowered or other drugs may be given to help manage your side effects. Skin rash is another side effect that is closely monitored. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
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complementary medicine People with genotype 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, people with genotype 2 or 3 and 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. You and your clinician should monitor your level of liver damage. Fibroscan is the preferred option although in some cases, liver biopsy may be suggested. 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. Phone the Hepatitis Infoline for the contact details of your nearest centre and to find out where your nearest Fibroscan is located. In NSW, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW For more information, please phone the Hepatitis Infoline and see our Two Hep C Questions booklet.
Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects. A similar trial, but on a larger scale, was later carried out. A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (contact the Hepatitis Infoline regards the above mentioned trials). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side-effects? • Are they a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?
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Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Infoline (see page 64) for more information and the contact details of relevant professional associations. • Hepatitis NSW. For more information, please phone the Hepatitis Infoline.
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support and information services Hepatitis Infoline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Infoline. 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. • 1800 803 990 (freecall). Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone the Infoline (above). Let’s Talk A free, counselling service offering face-to-face, telephone and online sessions for people in NSW. There is a team of qualified counsellors and a psychologist, all with specialised knowledge of hep C. Contact the Infoline (above) for more information. Live Well Group workshops that help people achieve better health through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the health care system. Contact the Infoline (above) for more information. 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 Prisons Hepatitis Infoline A special phone service provided by the Hepatitis Infoline that can be accessed by New South Wales detainees 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
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General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Infoline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). NSPs Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Infoline. 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. 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. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card and they keep all medical records private.
support and information services Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Infoline distributes information resources in some languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au AHCS online hep C support forum Australian Hepatitis C Support – an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338.
Gosford: 5.30pm to 7pm on the 3rd Thursday of each month at the Health Services Building, Gosford Hospital. Wyong: 1pm to 2.30pm on the first Thursday each month at the Wyong Health Centre, 38 Pacific Highway, Wyong. Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean Wednesday groups This is a relatively new group open to people who are considering or preparing for treatment, undergoing treatment and post treatment. Family and significant others are welcome to attend. The group meets every two weeks at the Nepean Centre for Addiction Medicine, Nepean Hospital on Wednesdays between 10.30 and 12.00. The groups alternate between “mixed” and “womenonly”. Our aims for this group are to provide social support, information and encouragement to people affected by HCV. For more information please contact George Klein on 0411 028423. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0412 126 707 or 6588 2750. Wollongong hep C support group A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am to 11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.
Want to get involved in lobbying for, or, supporting hep services in your local area? Contact David Pieper, the Hepatitis NSW C me Coordinator, at dpieper@hep.org.au
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promotions The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time. It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.
HALC
legal centre is now able to offer free help with hep C legal issues
HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with:
• Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. For more information, please visit www.halc.org.au or email halc@halc.org.au or telephone 02 9206 2060.
Please phone 02 6198 9800.
A historical perspective – september 1998 Headlines from 15 years ago:
Stay up to date with what’s happening in the hepatitis sectors. Take a look at the WDP website. It includes a training directory and has information and resources on harm reduction and health promotion, and provides updates on upcoming events. ASHM runs ongoing WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details. We invite you to use our website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at wdp@ashm.org.au or phone Ronnie Turner, Program Manager, 02 8204 0722.
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• Combination therapy approved as standard treatment in USA. • The risks of untested and unregulated remedies • Caution advised on nutritional claims • Fatigue as a symptom of liver disease • Naturopathy • Regulate to succeed • The Liver Cleansing Diet (book review) • Promoting evidence-based alternative medicine • The internet • Pegasys – pegylated interferon drug trial • Hepatitis through the ages • Stop press: NSW Health hep C awareness campaign If you are interested in any of the above articles, phone the Hepatitis Infoline to chat about the item or request a copy. • Taken from The Hep C Review, Edition 24, March, 1999.
noticeboard
acknowledgements Editor/design/production: Paul Harvey
Upcoming events
Editorial committee: Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Andrew Smith Jeffrey Wegener
20th National Symposium on Hepatitis B & C, Melb, 16 November http://tinyurl.com/ovyz7ng National Hepatitis Health Promotion Conference, Sydney, 14-15 November http://tinyurl.com/3pr4dcv Hepatitis NSW Audrey Lamb Community Forum and AGM, Surry Hills, 7 November 1800 803 990
Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Lisa Camillo, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak
Complaints
S100 treatment advisor: Kristine Nilsson (AGDHA)
If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2 or see right for our phone number and postal address.
Proofreading/subediting: Prue Astill Christine Berle Alastair Laurie Opiferum Adrian Rigg Cindy Tucker First dog on the moon comic: Andrew Marlton
Do you want to help? We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C.
Hepatitis Infoline: 1800 803 990
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As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • taking part in our C me community advocacy project • providing content for Hep Review and Transmission Magazine. • proofreading for Hep Review and other Hepatitis NSW publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker.
Contact Hep Review by phone: 02 9332 1853 fax: 02 9332 1730 email: pharvey@hep.org.au post: Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in: Level 4, 414 Elizabeth St, Surry Hills, Sydney
Want to find out more? Please phone the Hepatitis Infoline (see right).
Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to images, graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). These images are used for illustrative purposes only and they have no connection to hepatitis.
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