HEP REVIEW Edition 83
Autumn
mar 2014
Cross Cooks: Kirketon Road and Albion centres get together in the kitchen
Interview with a virologist: Prof Eric Gowans talks tiny things
Got money stress? Find out about financial counselling
py Free co e tak e s a e l P
HEPATITIS NSW – working towar
ds a world free of viral hepatitis Hep Review magazine
Edition 83
March 2014
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Cross cooks explore recipes for healthier lives Take one dedicated health promotion officer and mix with a handful of food-obsessed dieticians. Add a few well-seasoned punters. Blend. Sprinkle with tidbits linking what we eat with how our bodies feel. Stir up with a poster showing the ten teaspoons of sugar in a 375ml coke. Fold in humour and generosity to taste.
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efore we start, lets get something out of the way. I am no foodie. I never saw Masterchef. Until recently, I thought Donna Hay was something you fed to horses. Believe it or not, I once offered someone a candlelit dinner of Fish Fingers a L’Orange. So when the good editor here at Hep Review asked me to follow up a story on an innovative cooking class, I worried that once those cooks got a whiff of my culinary incompetence, I’d be fried. But like others in this sector, Cross Cooks, named for their Kings Cross location, have more than a good cup of kindness about them. “Everyone is welcome, regardless of skill level in the kitchen,” Health Promotion Officer, Joey Wong said. “Our free, monthly drop-in cooking class at the Kirketon Road Centre has an open-door policy.” To their credit, they get a range of folks through those doors, young and old, including those with or at risk of hep C, who might also be homeless or in unstable accommodation. For the past eight years, Joey has co-facilitated the Cross Cooks with Albion Centre dietitian, Miriam Chin. Together they have developed the program in recognition of the low priority often given to nutritional health by those who have more pressing concerns, such as dealing with the daily challenges of finding a safe place to stay. According to Joey, the program has evolved into a community event, “where we gather to eat and on the sly, teach the punters how to cook nutritional food.”
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“I like to get people to realise that you don’t need a lot of fancy stuff to cook healthy food. All you really need is a wok – you can steam in it, fry in it, boil water in it, all over a camping stove, plus it’s easy to store in your pack if you’re moving around.” Joey Miriam describes Cross Cooks as “all about building awareness of nutritional health, and selfconfidence.” And for those who aren’t sure what “nutritional health” means or why it might be important, Miriam explains... “because hep C increases the risk of heart disease, insulin resistance, and affects immune system functioning, good nutrition is even more vital.” These days, it’s common knowledge that in Australia, like other developed nations, we are buckling under the impact of preventable obesityrelated illnesses. If it’s hard for your average family in the suburbs to avoid the sway of the food industry, and succumb to soaring rates of
Image by jonolist. Via flickr.com
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type two diabetes and other health complications, imagine how hard it is to pause and consider alternatives to your Big Mac dinner when you’re hungry and sleeping rough. Nevertheless, Miriam is determined to get the message across that eating well is not just about preventing some far-off health disaster. “Good nutrition can improve your mood and overall wellbeing, on a day-to-day basis,” Miriam said unequivocally. “Choosing what we eat more carefully is one small thing we can do to feel better, now.” As the clinician behind the Cross Cooks success, Miriam’s challenge is to find recipes that include nutritious, cheap, easily accessible, easily stored foods that don’t taste like cardboard. The added task is to ensure the meals don’t present too many challenges to those with poor dental health who might have trouble chewing. For Joey, the low-key set up at Kirketon Road is important. “We only have a few small cook tops, a blender, and some utensils, that that’s it,” he said, adding, “I like to get people to realise that you don’t need
a lot of fancy stuff to cook healthy food. All you really need is a wok – you can steam in it, fry in it, boil water in it, all over a camping stove, plus it’s easy to store in your pack if you’re moving around.” Each month, Cross Cooks classes are organised around a theme. November’s power ingredient was peanut butter. I share with Miriam that I have never really thought of peanut butter as the ingredient for a meal. More, a soothing hit to be taken straight from the jar, after watching Scott Morrison on the 7.30 Report. “There’s a lot of meals you can do with peanut butter,” Miriam advises. “It’s also cheap, easy to store and nutritious. Last month we made peanut butter French toast, chicken satay wraps and peanut butter power smoothies.” I can’t believe I’m talking with a dietician about Peanut butter smoothies! Aren’t they a bit Elvisat-his-worst? Apparently not. “Peanut butter contains healthy fats, protein, also potassium which is a good balance to the high sodium common to takeaway food,” Miriam explained.
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Edition 83
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Image by thisisbossi. Via flickr.com
Image by eGuide Travel. Via flickr.com
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Before each session, Miriam and her team of student dietitians put their heads together to come up with a selection of recipes that can be streamlined and easy to follow. I confess that I tend to read recipes like science fiction novels, guffawing at the end, “that’s never going to happen.” But the Cross Cooks recipes involve three different options graded according to skill level and are written clearly, step by step. “We encourage the participants to cook the recipes independently with one-on-one assistance by facilitators (student dietitians), who are there to provide encouragement and to just have casual conversations about food, nutrition and cooking.” Remembering how evangelical most students of anything can be about their field of practice, I unfairly picture student dieticians a bit like food militia, wielding cans of spray oil and hiding the chocolate but Miriam allays my fears. “Most dietitians love food – all food – we’re not out to demonise any type of food. It’s more about looking at how to balance your choices.” 4
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So, I venture, might we catch the punters, the student dietitians or Miriam one lunchtime sneaking out of Pizza Hut? “You’re more likely to find me coming out of a gelato bar or an ice-cream store,” Miriam laughs. “Basically, a healthy diet is about everything in moderation, that’s all.” At the end of the Cross Cooks session, everyone sits down together to share a meal. For Joey, Cross Cooks feeds another need – addressing the loneliness that can often go hand-in-hand with risky, or transient lifestyles. “If we can encourage people to build up the skills, they might eventually have the confidence in the future to invite a friend over to share a meal.” For Brian, 44, who has been at Cross Cooks since it started, the project “has been a good opportunity to learn how to make good food on the cheap.” Originally from Brisbane now living in Kings Cross, Brian said he had become, “addicted to smoothies” but “wasn’t a fan” of the infamous peanut butter one.
“Most dieticians love food – all food – we’re not out to demonise any type of food. It’s more about looking at how to balance your choices.” Miriam The other benefits found from attending the sessions were related to the interaction with the student dieticians. Describing them as “pretty good and not too bossy.”
Image by RubyGoes. Via flickr.com
Image by thelesleyshow. Via flickr.com
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food has been the central organising force around which vibrant communities are sustained. Likewise, the Cross Cooks mix of compassion and generosity, well-considered menus, and savvy use of woks, is doing its own bit to help a community explore the recipes for a healthy life. Find Cross Cooks on the second Tuesday of every month at the Kirketon Road Centre, above the Fire Station at Darlinghurst Road, Kings Cross. Phone 9360 2766 for details.
“They check my BMI and keep it on file, it’s been high, but it’s coming down,” said Brian, suggesting the Cross Cooks sessions have real benefits in terms of improving health.
Postscript: I attempted to contact a few of the other Cross Cooks to add more colour to this story, but apart from Brian who I caught (no pun intended) out fishing on a Sunday afternoon, other phones rang out and voice-messages went unanswered, evidently, the remaining Cross Cooks were out to lunch.
Throughout history, mealtimes have been a way to connect, share stories and – Fish Fingers a L’Orange and other culinary disasters aside – build our most important relationships.
• Charlie Stansfield is a freelance writer who regularly contributes to Hep Review magazine. She is a counsellor and coach. Contact her on violettara@yahoo.com
For thousands of years in a variety of cultures stretching from SE Asia to the Mediterranean,
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editor’s intro
promotions
Live Well – HELPING YOU MAXIMISE YOUR HEALTH 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 wellbeing. 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. • Who: You and other people with hep C • Where: Surry Hills (near Central Station)
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Come join our group, meet others who have hep C and get information that can help you improve your health and wellbeing. Contact Fungi on 9332 1853 or fjaboon@hep.org.au ALL GROUPS ARE CONFIDENTIAL AND FREE
promotions
contents Letters 8
Other readers want to hear your story
Australian news
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World news
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Features Cross Cooks explore recipes for healthier lives 2
“I have received your valued publication for many years. It continues to inform me, keeping me up-to-date with options for treatment. It helps me emotionally as I read the stories of others. I have articles that I have cut out and kept.” RP, Tasmania.
We all need to talk about hepatitis C
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C – the person not the disease
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NUAA training on stigma and discrimination
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Hep Health Promotion Conference 2013
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Viral hepatitis affects all parts of NSW
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The empowering effect: financial counselling and support
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Be smart about body art
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The Canberra opioid treatment service
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First Step Illawarra turns twenty five
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Image / Google Images
Interview with a virologist: Eric Gowans talks tiny things 40 Obituary: Mark “Chopper” Read
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Obituary: Dr Jack Fishman
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Forbes hep C awareness mural
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My story Hep C, prison, treatment and renewal
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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.
Jim’s story: Fairground rides and magic pills
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Please consider sharing your story. We can send you a guide to writing your story.
HCV oral combo nearly perfect
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Knowledge of status influences sharing in injecting drug use
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Research updates Client identity and hep C treatment in OSTs
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Men-only hep B mutation explains cancer rates 59
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.
Assessing the global and regional burden of liver disease 60 HCV reinfection, spontaneous clearance high among people who inject
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UK urges gyms to provide needles for steroid users 61
• Further conditions apply. To submit your story, please send to Paul Harvey, Hepatitis NSW, PO Box 432, Darlinghurst NSW 1300. For more info contact pharvey@hep.org.au or 0412 885 201.
Regular features Hep Chef – Peanut butter and strawberry
Also see our call for photos on page 45.
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
French toast
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Hello Hepatitis Infoline – starting treatment
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Reader survey form
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Membership form
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Pharmaceutical treatment for hep C
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Complementary medicine
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Support and information services
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Hep Review magazine
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March 2014
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letters
letters Hi Reece You asked in your reader survey form if, being in jail, you could take part in the phone market research.
We’ve phoned the company involved and they said, yes, prisoners would be able to get involved – but they highlighted that surveying had finished around 25 Nov. In future, when dealing with research companies, we’ll check whether prisoners can get involved and whether there are special ways to do so, given that your outgoing calls are limited to six minutes. • Thanks for your good question.
Our online version of Hep Review can be found via www.issuu.com/hepatitisnsw 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. You can also view the magazine via www.hep.org.au
ACT prison needle exchange The ACT Hepatitis Resource Centre welcomes the ACT Government’s Strategic Framework for the Management of Blood-Borne Viruses (BBVs) in the Alexander Maconochie Centre (AMC). The document has been released alongside the new Drug Policies and Services Framework for the AMC and the Final Status Report on implementation of the previous Burnet Report recommendations. These important documents detail a pathway for the implementation of evidence-based, collaborative and much-needed action on BBVs in our prison. Reducing needle sharing through exchanging used for new injecting equipment is an important element of the Government’s response to BBV transmission and risk at the AMC. However, the real strength of the Strategic Framework is its comprehensive suite of strategies that together will reduce transmission and minimise the impacts of BBVs; increase access to preventative measures, testing and treatment; and improve the health and wellbeing of detainees. Some 30 years ago Neal Blewett (Health Minister in the Hawke Labor Government) faced down controversy when he and others courageously averted a potential HIV/AIDS epidemic by providing sterile equipment to those at greatest risk in the broader community. Since that time the Australian community-based NSP has saved the nation $1.28 billion in BBV treatment costs alone. • John Didlick, Executive Officer of Hepatitis ACT.
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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nsp forum update Image courtesy of Google Images
New South Wales – Workers from Needle & Syringe Programs (NSP) from across NSW attended the 2013 NSP Workers Forum held in Sydney on 18-19 October. HepLink held a symposium during the forum aiming to develop the capacity of local NSPs to deliver chronic viral hepatitis self-management (CDSM) programs. CDSM is all about activities that improve health, monitoring and dealing with symptoms, dealing with poor health and adhering to medical treatments.
Hepatitis nSW agm New South Wales – For the last 21 years Hepatitis NSW governance has been overseen by a number of dedicated people drawn from the community and its associated workforce. Without these leaders we would be missing a vital part of what has made Hepatitis NSW the longest-serving and largest organisation providing services, information and support specifically to people affected by viral hepatitis in NSW today. A new Board of Governance was agreed at the 22nd Annual General Meeting of Hepatitis NSW on 7 November 2013. They include Warren Fahey (President), Peter Middleton (Vice President), Richard Taggart (Secretary), Carlos Gomez (Treasurer), Ron Beckett, Juliana Triml, Anne Lawrance, Catherine Passey, Sharon Jacobs, Simone Strasser, KerriAnne Smith, Shane Coombe and Vicki Raper.
We thank Justine Doidge (JD), who delivered a talk explaining CDSM programs and environments that support or hinder them, and Kate Reakes, who outlined the wide range of programs offered by NSP services in the Sydney LHD. These presentations were followed by a workshop where attendees came up with strategies to design CDSM programs for NSPs. Heplink attendees identified barriers especially in regard to regional NSPs meeting their current core business before even considering the notion of expanding the project and service delivery. Other examples of barriers included geographic and professional isolation and less opportunity to form partnerships with leading organisations that are usually based in urban centres.
We congratulate and welcome Warren Fahey to the position of President and wish the Board every success for the 2013/14 year. We also thank most sincerely Peter Middleton who served as Acting President in 2012/13.
Open forums such as the NSP Workers Forum and HepLink can provide a space for conversations to evolve and identify complexities of disadvantage, fostering solutions to strengthen our attempt to deliver equitable health services to all Australians, including regional priority populations.
• Stuart Loveday, CEO at Hepatitis NSW.
• Hepatitis NSW
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 Dianne How Chow, phone: 8382 3607 or email: dhowchow@stvincents.com.au Image courtesy of Google Images
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Hepatitis nSW Cheryl burman award New South Wales – The Hepatitis NSW Cheryl Burman Award is a new award given to a person or agency (or group) who show exceptional leadership in the NSW viral hepatitis response. The award was announced on 7 November 2013 and was presented by Mr Brad Burman and his sons Joel and Rueben. Cheryl Burman is a former volunteer, Board member and President of Hepatitis NSW. Cheryl, in whose honour this award is named, lost her long battle with hepatitis C-related liver disease in 2011. The inaugural Award was given to Gary Gahan, who is the Coordinator of Harm Minimisation and Hepatitis C Programs in the South East Sydney Local Health District (NSW Health). Our congratulations go to Gary, who truly has shown exceptional leadership, not just in the last year, but since 2001, when Gary entered the viral hepatitis workforce as a project officer within the HepCare coordinated care trial in the Northern Sydney and Central Coast Area Health Services. Since then, Gary has been at the cutting edge of viral hepatitis health promotion services in NSW.
New telehealth program for Coffs New South Wales – Coffs Coast residents with chronic hep C can now access a new Telehealthbased assessment and treatment program. Sawtell-based S100 Hepatitis C Prescriber, Dr Trish Collie successfully collaborated with the Northern NSW and Mid North Coast Local Health Districts and received private sector funding for a nurse-led HCV treatment program. “Coffs Harbour and surrounds will benefit from the addition of a Fibroscan to assist with treatment decision making, while providing an additional site for treatment,” Dr Collie said. Manager of North Coast HIV & Related Programs (HARP), Jenny Heslop said the Coffs Harbour area features high incidence of hep C with long treatment waiting lists. “Collectively we can deliver the very best of services to...patients on the coast,” she said. “Dr Collie already has fifteen patients ready to be assessed and will be equipped with a Fibroscan to better inform the assessment process.” • Abridged from dailyexaminer.com (27 Sept 2013) http://tinyurl.com/lj7pzsu
• Stuart Loveday, CEO at Hepatitis NSW.
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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Western NSW hep C spike New South Wales – Last year, more than 360,000 syringes were distributed by the Far West Local Health District (FWLHD) – an increase of over 150,000 from the previous year. “Improved access to clean injecting equipment encourages and enables people who choose to inject drugs to obtain and use a clean syringe and needle every time,” said a FWLHD spokesperson, who highlighted that hep C notifications in the Far West had tripled between 2010 and 2012. “It helps to break the cycle of spreading bloodborne viruses...” Police said the surge in demand for syringes was almost certainly driven by the prevalence of hard drugs in the community. “Police are firmly of the opinion that the use of syringe injected drugs, such as amphetamine, has [led to] a dramatic increase in the dispensing of fitpacks,” said Barrier LAC crime manager, Mick Stoltenberg. Studies show that clean needle programs can prevent the spread of disease and reduce longterm health costs, and also act as a referral point for those wanting to begin drug treatment. • Abridged from bdtruth.com.au (10 Oct 2014) http://tinyurl.com/nyhytrz
Crucial Hep C vaccine stalled due to lack of funding
Victoria – A game-changing vaccine that could help eradicate [hep C] has stalled over a funding shortfall. Melbourne scientists have successfully tested the vaccine in animal models, but it cannot progress to human trials until it secures funding. Associate Professor Heidi Drummer said her team had developed a preventive vaccine that – together with new direct acting antiviral agents – could eradicate the virus. Hep C has been a difficult virus to tackle with a single vaccine because of its clever ability to change its structure and evade our immune response. In mice and guinea pigs injected with the vaccine, Prof Drummer’s team found the body produced antibodies that were able to tackle all virus strains, stopping the infection. She said it was a real step forward, but the crucial test was replicating the result in humans. The Burnet Institute has been unable to secure funding to carry out phase 1 clinical trials. • Abridged from heraldsun.com.au (8 Oct 2013) http://tinyurl.com/muyhhzb
Also see page 29.
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 a 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
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aUSTRALIA’S HEP b ROAD Map
Chemists key to highlighting hep risks
Australia – A new research report has revealed that just 15 of Australia’s 61 Medicare Locals are home to more than half of all the people living with chronic hep B nationwide. The Australasian Society for HIV Medicine and Victorian Infectious Diseases Reference Laboratory are working in partnership to produce a comprehensive understanding of hep B epidemiology in Australia via the Hepatitis B Mapping Project. The project uses a range of indicators to estimate the burden of disease and also the uptake of treatment and care, including census demographic data, surveillance notifications, liver cancer incidence and prescriptions for hep B treatments. The demographic approach allows the most affected groups to be identified in particular Medicare Locals. The impact of public health and clinical service interventions to increase access to diagnosis and treatment will also be evaluated at a population level over time.
Australia – Pharmacists could play a crucial role in educating young people about the risks of contracting hepatitis through DIY tattooing and body piercing, according to the Pharmaceutical Society of Australia. Supporting Hepatitis Australia’s “Schoolies Week” campaign, Grant Kardachi, PSA national president, said the profession was “ideally placed” to inform teenagers about the dangers of the use of unsterilised needles for body piercing and “DIY tattooing”. “Our accessibility clearly makes it easier for people to come in and talk to a health professional and this underscores the important role we play in public health issues such as hepatitis,” Mr Kardachi said. • Abridged from pharmacynews.com.au (14 Nov 2013) http://tinyurl.com/myl2cbf
The project research reports can be downloaded via http://tinyurl.com/l8br7y9 • Abridged from BBV News, via j.johnson@ latrobe.edu.au
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Resource OF THE MONTH
PC E H O TW STIONS QUE
Two Hep C Questions:
What will happen to me? Should I go on treatment?
n appe h l l i w Whate? to m o on g I d l Shoument? treat
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Revised in January 2014 and expanded to include information on triple combination treatment, this key booklet continues to provide detailed information on hep C outcome and treatment. 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
news
Image courtesy of Google Images
needles for steroid users in gyms
UK – Gyms should provide needles for people who inject steroids and tanning drugs to reduce the risk of them contracting blood-borne viruses such as hep C, British health authorities report. About 70,000 people injected anabolic steroids in England and Wales in the past year, according to the National Institute for Clinical Excellence (NICE), a government body which provides guidance on health services.
Fleetwood Mac liver cancer USA – Fleetwood Mac says bassist John McVie has been diagnosed with liver cancer. The group is canceling the Australian and New Zealand leg of their world tour. “Fleetwood Mac, who has just completed the European leg of their phenomenally successful worldwide tour, has announced the cancellation of their upcoming 14 date tour of Australia and New Zealand,” the group said on Facebook. “John McVie, one of the co-founding and original members of Fleetwood Mac is now scheduled to be in treatment for cancer during that period of time,” the statement continued. “We hope our Australian and New Zealand fans as well as Fleetwood Mac fans everywhere will join us in wishing John and his family all the best.” • Abridged from www.upi.com (27 Oct 2013) http://tinyurl.com/krrdgtg Click here for some “gold” Fleetwood Mac... http://tinyurl.com/39ppmza
A study of 395 injectors found that one in 18 had been exposed to hep C, one in 11 had been exposed to hep B and one in 65 has HIV. NICE has now put new guidance out for consultation urging the establishment of needle and syringe programmes in gyms. Dr Vivian Hope, an expert at Public Health England urged “easy access for those who inject image and performance enhancing drugs to voluntary confidential testing services for HIV and hepatitis, [and easy access to] appropriate sterile injecting equipment”. • Abridged from Google News (24 Sept 2013) http://tinyurl.com/l82t5mt The NSW Ministry of Health, Hepatitis NSW and others are looking at the issue of people who inject image enhancing drugs (steroids) and NSPs. It is important to note that there are no restrictions on the purposes for which people can access NSPs. It can be for illicit drugs, image enhancing drugs or any other purpose. Also see page 61.
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!
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March 2014
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news
Indonesia’s Hep C Time Bomb
OxyElite Pro linked to liver damage
Indonesia – In 2007, Indonesia’s Health Ministry estimated that more than 2% of the country’s population had hep C. Suhendro Sugiharto, program manager at the Indonesian Drug Users’ Network (PKNI), reported that people who inject drugs could often not access hep C harm reduction strategies or treatment. PKNI research with drug-using communities in eight Indonesian cities revealed that nearly two-thirds of drug users received harm reduction services, but half of those accessing harm reduction services never received hep C testing and treatment information.
USA – The company that makes OxyElite Pro, a dietary supplement linked to severe cases of hepatitis, has finally recalled shipments that appear to be associated with one reported death and at least 56 cases of liver illness.
Patients need diagnostic tests [PCR] that cost up to $580, three times the average Indonesian’s monthly salary. PKNI and other international advocates recently demanded that [drug companies] cut prices to increase access to treatment. Indonesia’s Minister of Health Nafsiah Mboi announced that National Health Insurance would cover hep C treatment beginning in 2014. The Health Ministry established a national program focused on hep C in 2011 and would begin to implement a national plan sometime between 2015 and 2019. • Abridged from thebody.com (11 Sept 2013) http://tinyurl.com/meh9q8k
The company, USPLabs, had previously stopped shipments of the weight-loss product, but initiated a recall on 10 Nov after the US Food and Drug Administration threatened legal action. The Hawaii State Department of Health is spearheading an investigation into the issue. It could be caused by an ingredient, a contaminant, or a product production error, said Hawaii State Epidemiologist Dr. Sarah Park. Hawaii may be especially sensitive to detecting severe hepatitis outbreaks because only one hospital in the state can handle acute liver failure and transplants. That hospital also happens to be across the street from the state health department, Park said. “They couldn’t find any particular reason for these people to have liver injuries other than the fact that they all took OxyElite Pro as a dietary supplement.” • Abridged from foodpoisonjournal.com (15 Nov 2013) http://tinyurl.com/kjw8drt
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
news
Herman Wallace dies Gilead’s patent in India opposed after being freed USA – A US man who had his murder conviction overturned by a judge after spending 41 years in solitary confinement has died of liver cancer just three days later.
India – US drug-maker Gilead’s patent application on sofosbuvir has been opposed at the Indian Patent Office by legal group, Initiative for Medicines, Access & Knowledge (I-MAK).
Herman Wallace, 71, was in a nursing clinic when he succumbed to his liver cancer, his lawyers told BBC.
Gilead’s patent application has been opposed on the grounds that it is an “old science, known compound,” said Tahir Amin, lawyer and director of US-based I-MAK.
A long-running international campaign suggested he was wrongly convicted because he was associated with the revolutionary Black Panther Party. Wallace spent the next four decades at Louisiana State Penitentiary, confined to a cell barely 3x2m except for one hour per day; lifting weights made of old newspapers, responding to letters and working on his appeal. Judge Brian Jackson ruled Wallace’s conviction unconstitutional as women were barred from serving on his jury, in what is widely regarded as a thinly-constructed case.
“India’s patent law doesn’t give monopolies for old science or for compounds that are already in the public domain. We believe this patent on sofosbuvir does not deserve to be granted in India,” he said in a statement by international humanitarian organisation MSF (Médecins Sans Frontières – Doctors without Borders), who support the patent opposition. • Abridged from thehindubusinessline.com (23 Nov 2013) http://tinyurl.com/nkcwuye
Tessa Murphy, of Amnesty International, told BBC said it was “small consolation” and “no one should have to endure 40-plus years in solitary confinement”. • Abridged from ninemsn.com.au (5 Oct 2013) http://tinyurl.com/k649pjy See more in ED82, page 23.
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
Hep Review magazine
Edition 83
March 2014
15
news
Europe to say yes to usa approves Gilead’s sofosbuvir Simeprevir Europe – Gilead Sciences hep C treatment Sovaldi has been recommended for approval in Europe.
USA – The US Food and Drug Administration (FDA) approved the protease inhibitor simeprevir (Olysio) to treat hep C genotype 1.
The Committee for Medicinal Products for Human use (CHMP) has said Sovaldi (sofosbuvir) should be approved for use “in combination with other medicinal products for the treatment of hep C in adults”.
Simeprevir is the third protease inhibitor for hep C to hit the market. Boceprevir and telaprevir received FDA approval in 2011.
Sofosbuvir looks set to become a major new earner for Gilead, cementing its position in the antiviral drugs sector. CHMP noted that trials had “shown convincingly” that sofosbuvir in combination with ribavirin was effective and safe, taking Gilead another step closer to launching the first drug regimen for hep C that doesn’t require interferon, improving compliance and tolerability. In a statement, the European Medicines Agency (EMA) said the prevalence of hepatitis C infection ranges from 0.4 to 3.5 per cent among the European member states. The CHMP said that when sofosbuvir is used in combination with pegylated interferon as well as ribavirin, it can shorten treatment duration down to 12 weeks from 24-48 weeks, noting “this is of value considering the side effect profile of interferon”. • Abridged from pmlive.com (25 Nov 2013) http://tinyurl.com/n2zwnqo
The new drug is for adults with hep C liver disease, including cirrhosis, who have yet to receive treatment, or who have not responded well to previous treatments. The FDA said simeprevir is designed as one component of a combination antiviral therapy regimen. Last month, an FDA advisory committee recommended simeprevir on the basis of clinical trials in which both treatment-naïve and treatment-experienced patients with hep C received the drug in combination with ribavirin and peginterferon-alfa. Simeprevir’s effectiveness was diminished, however, in patients infected with the genotype 1a hepatitis C virus with an NS3 Q80K polymorphism. The FDA recommends that clinicians screen patients for this common strain of the virus before prescribing simeprevir, and consider an alternative treatment if they find this variant. • Abridged from medscape.com (22 Nov 2013) http://tinyurl.com/k2g569q
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 or lisa.dowdell@sesiahs. health.nsw.gov.au
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www.hep.org.au
Image via Google Images
St George Hospital liver clinic
news
Simeprevir Approved Japan yet to rule on Daclatasvir in Canada Canada – Health Canada has approved simeprevir for the treatment of hep C genotype 1, in combination with peginterferon alfa and ribavirin in adults with compensated liver disease, including cirrhosis, who are treatment-naïve or who have failed previous interferon therapy (pegylated or non-pegylated) with ribavirin. In Canada, for a drug to receive priority or accelerated review, it must show effective treatment of a serious, life-threatening or severely debilitating disease or condition for which no drug is presently marketed in Canada. Or, it must show a significant increase in efficacy and/or decrease in risk so that the overall benefit/risk profile is improved over existing therapies for a disease that is not adequately managed by a drug already marketed in Canada. “Canada is the second market where simeprevir has been approved and will be a new agent in the treatment of hepatitis C. The priority review process shows the importance of offering new treatment options also for the hardest to treat patients and we are very happy that both patients and physicians are given new hope,” said Maris Hartmanis, CEO, Medivir. • Abridged from dddmag.com (20 Nov 2013) http://tinyurl.com/lx9l4tx
Japan – In the multibillion-dollar race to bring oral hep C treatments to market, Bristol-Myers Squibb is leapfrogging Gilead Sciences and Johnson & Johnson by filing for approval for daclatasvir with Japan’s Pharmaceutical and Medical Devices Agency. The daclatasvir and asunaprevir combo therapy is the first all-oral treatment to be filed for approval, eliminating interferon and ribavirin, which can have significant side effects. The market for hep C treatment may not be as big in Japan as it is in the USA, but the number of people with hep C still totals some 1.2 million. The opportunity for daclatasvir to capture share and generate revenue is big, given that as many as 70% of Japan’s hep C patients are infected with the genotype 1b version of the disease, which has a reputation of being tough to treat. In Japanese patients, the daclatasvir and asunaprevir combo therapy produced an 84.7% cure rate at 24 weeks. Those impressive results and the significant unmet need are likely to help speed a decision from Japan’s regulatory agency, which is expected to issue a final “yes” or “no” next year. • Abridged from dailyfinance.com (13 Nov 2013) http://tinyurl.com/ltqmz7p
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
Edition 83
March 2014
17
news
Nagaland locals campaign on hep C
US doctor gets life in prison for hep C
India – A hep C signature campaign organised by Kohima Users Network along with Hepatitis coalition of Nagaland (HepCoN) was held in Kohima with Commissioner of Health and Family Welfare Sentiyanger attending.
USA – The former Las Vegas doctor who was convicted in connection to the largest hep C outbreak in US history was sentenced to life in prison.
In his speech, Sentiyanger expressed gratitude to the organisers and said government would extend full support for this campaign. HePCoN executive member Ketho Angami said the aims of the campaign were to provide knowledge to the general public on how HCV was transmitted. Angami said [HCV] prevalence rate [was up to] 20% among people in Nagaland who inject drugs. However, in the recent years, not much has been done by the state government, civil organisations or the NGOs working in the field of HIV/AIDS. The [hep C] epidemic continues to spread rapidly and at a very alarmingly rate, he added. He said the [new] campaign will reach out to a total of eight strategic sites in Kohima district. The target groups are people who inject drugs and service providers. HepCoN Convenor Abou Mere, in his speech on issues and concern, said the prevalence of hepatitis C infection among people who use drugs has been a huge concern not only in Nagaland or India but also globally. • Abridged from nagalandpost.com (19 Nov 2013) http://tinyurl.com/lytee8t
A judge handed down the sentence for Dipak Desai, who was found guilty on counts of seconddegree murder, patient neglect and theft. In all, a jury convicted him on 27 counts. Desai’s sentence included the possibility of parole after 18 years served. Desai’s assistant Ronald Lakeman was also sentenced in the case. He was ordered to serve eight years but no more than 21 years in prison. Desai was the owner of the Endoscopy Center of Southern Nevada, where more than 100 patients were infected in 2007 and 2008. During a trial, prosecutors claimed Desai and Lakeman rescued vials and other medical equipment. Desai’s attorneys made a final effort to get a lenient sentence for his client, saying the former doctor is a “caring and religious man” and the outbreak was not anticipated. Judge Valerie Adair, though, called Desai a complex person and observed an “abundance of disregard” for patients. • Abridged from fox5vegas.com (25 Oct 2013) http://tinyurl.com/m4gktgp
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
18
www.hep.org.au
feature Q&A: How much alcohol do we Australians drink? If we measure up all the alcohol purchased in Australia during 2011-2012, and divide it by the number of adult Australians, theoretically, we each had 10.1 litres of pure alcohol available for consumption during the year. This was slightly less than the amount in the previous year (10.3 litres). As a standard drink consists of 12.5 mls of pure alcohol, this is equivalent to an average of 2.2 standard drinks per day per person aged 15 years and over. Many people don’t drink at all and many drink too much, especially by binge drinking. The Australian National guidelines for alcohol suggest no more than two standard drinks per day for men and women. Abridged from http://tinyurl.com/k83hcsw
HEPATITIS
INFOLINE INFO, SUPPORT, RE FERRAL
1800 803 990
Interpr
www.he
Do you have hep C? Do you think you over-indulge? To chat about alcohol and hepatitis, 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
Image / Google images
Hep Review magazine
Edition 83
March 2014
FREE C L
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Ideas include: • putting them in doctors’ surger ies • putting a stac k of them in your local library, community centre or bookst ore • letterbox drop s in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources or der form or phon e the Hepatitis Infoline (on 1800 803 99 0).
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Want to talk about anything hepatitis rela ted?
You can now chat instan tly with one of our Infoline workers via www.h ep.org.au Just click the blue Live Support button at the top of the site, an swer some confidential questions for our stats and you’re able to start chatt ing. There’s no need to sign in or down load any new software. Simple! You can use the online ch at service between 9am to 5pm we ekdays (except Thursdays when it is av ailable from 1-5pm). The service provides fre e information, support and referral to an yone in NSW.
For info, support and referral online Hep Review magazine
Edition 83
>>
March 2014
21
feature
We all need to talk about hepatitis C
The death of musician Lou Reed from liver cancer may raise awareness of the challenges of living with hep C, but more work needs to be done to make sure treatments are widely available, writes Professor Greg Dore.
In a moving, intimate tribute to Lou Reed in a recent issue of Rolling Stone, his partner Laurie Anderson writes with gratitude and love of their shared joys of artistic endeavour, their embrace of life and learning and of Reed’s power and grace, even in the face of death. She also writes, in an awareness-raising matterof-fact manner, of the challenges of living with hep C, the chronic liver disease that led to his liver cancer, a liver transplant, and ultimately his death from complications. He was sick for the last couple of years, first from treatments of interferon, a vile but sometimes effective series of injections that treats hepatitis C and comes with lots of nasty side effects. Last spring, at the last minute, he received a liver transplant, which seemed to work perfectly, and he almost instantly regained his health and energy. Then that, too, began to fail, and there was no way out. — Laurie Anderson, writing about Lou Reed in Rolling Stone One of the greatest challenges faced by people living with hep C, their partners and families, is discussing the illness openly. Although Reed, a founding member of The Velvet Underground, did not shy away from his own personal history, the stigma associated with the alignment of hep C infection and injecting drug use is so profound that people often hide their status, even from their family and friends. For most people with hep C there is no fame or fortune to dilute fears of being harshly judged. Consequently, even in consultations with health care professionals many people with hep C are reluctant to acknowledge past injecting drug use, often due to their previous experiences of discrimination. Such stigma and discrimination are major barriers to advancing the public health response to hep C at both the individual and population levels. The mobilisation of advocacy to address the rising burden of infection and deaths from HIV in the 1980s was supported by the effective 22
www.hep.org.au
community-based endeavours of the gay rights movement of the 1970s. In contrast, former or current injecting drug users are generally reluctant to identify with this part of their lives, despite often having strong social networks related to such shared experiences. The illicit nature of injecting drug use has also clearly influenced community attitudes and impeded the overall public health response to hep C, despite a well-developed strategic governmental response, particularly in NSW. Change, however, is imminent. Within the next few years, the treatment of hep C should be transformed from the relatively prolonged (6-12 months), arduous, and often ineffective interferonbased injectable therapy that Reed endured, to an oral once daily “direct-acting antiviral” therapy with limited side effects. Even more remarkably, based on preliminary clinical trials, the cure rate with these new hep C regimens should be greater than 90%, with treatment only required for three months. But, to enable people living with hep C to benefit from what could be one of the great clinical advances in recent decades, treatment programs must be within reach. This means challenging stigma and discrimination now and raising community awareness to support people with hep C to seek treatment, as well as making sure that treatment is widely available. I have had the opportunity to care for people with hep C in hospitals, methadone clinics and community-based clinics; such diverse care environments reflect the great diversity of those living with the illness. The Perfect Day that we are striving for in hep C would be one in which the 230,000 people living with chronic hep C in Australia have the opportunity to fully benefit from approaching advances in treatment and care. • Abridged from abc.net.au (18 Nov 2013) http://tinyurl.com/o5hu7f2 Professor Gregory Dore is head of the Viral Hepatitis Clinical Research program at the Kirby Institute (UNSW).
Image by Man Alive! Via flickr.com
feature
Some comment on the ABC website, generated by this article Gratuitous Adviser: I’ll stand corrected but it seems that the main causes of hep C...are drug use or getting a tattoo...self-induced and preventable practices, I would think. I would much prefer the limited health dollar go to those that have caught hep C through no fault of their own or a working poor family that is in need of better health care. PaulH: Say someone is born into an area with high unemployment and no economic growth. Say they suffer abuse as a child and do poorly at school. This is the story of many people who use drugs. Look at The Wire or The Corner. Ask yourself if the individual people who develop a drug addiction are wholly at fault. You’ve gotta be pretty harsh to say, yes, it’s their choice and their fault...don’t denigrate people for the lot that our culture has dealt them. Ex-servicewoman: I was born to teenage parents, “raised” in a housing commission enclave on the outskirts of a capital city. Abuse was the norm for most of us in that place, as was
unemployment, drugs, gangs, the list goes on...I hated my childhood, hated my life. Luckily for me I had the fortune of being mentored by a couple of teachers who ended up playing a significant role in my “escape”. It was purely the luck of some genetic throwback that I had...capacity to learn, along with a healthy dose of determination in not repeating the whole @#$%! mess another generation. I was accepted into a science degree, chose a career in the ADF. I am now middle aged and have never taken anything for granted. Those who never had...help or support...in their lives, those who through no fault of their own didn’t have the capacity to learn, they’re repeating the cycle. I don’t know what makes some of us strong, some of us able to cope and go on to building better lives, I just know it’s something bigger than you and I. Such a crying shame others can’t see beyond their own little cocoons to offer some hope and be part of a solution. • http://tinyurl.com/o5hu7f2
Hep Review magazine
Edition 83
March 2014
23
feature
C – the person not the disease A new campaign tackling stigma and discrimination toward people with hep C is being rolled out across NSW this summer, writes David Pieper. A new campaign tackling stigma and discrimination toward people with hep C is being rolled out across NSW this summer. We know that stigma and discrimination has significant ramifications for the health and well-being of people with hepatitis C. It undermines their relationship with health care professionals and can become a deterrent for people seeking health care. A comprehensive report into the diagnosis, disclosure and discrimination of living with hepatitis C suggested that discrimination is prevalent in hospitals, general practice and dental surgeries. Another report released last year by the Australasian Society for HIV Medicine found that there was still significant stigma and discrimination in the health sector against people living with hepatitis C. To help address this, C me Community Advocates from across NSW came to Sydney for a training weekend on 28th and 29th September 2013 focussing on hep C stigma and discrimination. They were helped to examine their own thoughts, beliefs and attitudes about hep C; to understand the roots and consequences of stigma and discrimination, and to recognise self stigma through their own stigmatising language and discriminatory actions. Special consideration was given to understanding hep C stigma in Aboriginal communities and toward people who inject drugs. An update on antidiscrimination legislation in relation to hep C was also provided. C me Community Advocates worked together to help develop an advocacy campaign to tackle stigma and discrimination within the health sector, using the campaign slogan C - the person not the disease. The campaign will involve: • People with hep C sharing their stores of stigma and discrimination • Mailout to GP surgeries in NSW of the DVD C Me Hear Me • Face to face interaction with health professionals at Medicare Local events • An online pledge for health professionals and others to sign
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www.hep.org.au
“I was deeply humiliated by a doctor who, panicking after a needle-stick injury, shouted to everyone in the surgery reception demanding to know my hep C status. I was paralysed on the floor, hearing everything yet unable to answer, it was a nightmare! Despite making a formal complaint, finding a new doctor, I received little support leaving me despairing and mistrusting of the medical profession.” Glenda Clementson, C me Community Advocate.
Framing the campaign message In highlighting discrimination we need to be aware of the potential of adding to stigma. Some people might have seen the winning entry in Janssen’s See The Real Thing competition in which a man with hep C experiences discrimination from his workmates and friends before seeking treatment – he is shown with a paper bag on his head. We wanted to be sure we would not add to stigma and discrimination and people told us that it is okay to illustrate stigma when you are seeking to talk back at it, but not okay to suggest that treatment is the antidote to stigma and discrimination – that would imply that the person being stigmatised is responsible for the removing the stigma themselves! The slogan C – the person not the disease was chosen as a concise way of helping people understand what the campaign is all about. Having a catchy slogan increases retention rate and action – in testing, 90% of those surveyed were able to identify that the slogan was trying to address stereotyping. Previous campaigning has showed us that a visual cue is really useful to get people engaged with the campaign message. Over 70% of survey respondents understood the campaign graphic to be about the labelling of people with hep C, the shame people feel or the hiding they undertake to prevent this.
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C the p
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Examples of hep C related discrimination 1
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• Doctors refusing you pain medication because they think you inject drugs. • A doctor, clinic or other service refusing you on the basis “our services aren’t for drug users”. • Marking your files or your hospital bed with a colour coding for infectious or hep C (yellow wristbands or labels, etc.)
AM
• Non-standard infection control – putting you on the last of the daily list or using plastic cling wrap on the instruments used just for you. • People at work talk about your hep C and you don’t get promotions or they treat you differently (for example, ask you to get your own coffee cup or cutlery).
Hep Review magazine
Edition 83
March 2014
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Rebecca & Nathan, regional NSW. Image by Exposition by RAF
The really useful result was that 80% of respondents described the campaign as effective at conveying the campaign message. The Ministry of Health has approved the use of the campaign graphic to tackle stigma and discrimination. Share your stigma and discrimination story People with hep C will are encouraged to share their stories of stigma and discrimination at the hands of the medical profession on the website, which will build into a living resource of experience on the C me website. How can you help? 1. Share your story If you’ve been affected by stigma and discrimination in any of these ways, share your story of hep C stigma and discrimination. Just contact David Pieper on 02 8217 7710 or campaigns@hep.org.au 2. Pledge to stamp out stigma and discrimination If you believe in speaking out against discrimination, stigma and judgement please sign the pledge at www.hep.org.au/c-me
Jacklynne, Western Sydney. Image by Exposition by RAF
• David Pieper is Coordinator of the C me community advocacy project, Hepatitis NSW.
Reducing stigma and discrimination faced by people living with hep C can help improve relationships with health care professionals and serves as an incentive for people with hep C to seek health care. I call on all healthcare workers to respect confidentiality concerns, ensure best practice and equitable treatment for people living with hep C and to end stigma and discrimination in the health sector.
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www.hep.org.au
David & friend, regional NSW. Image by Exposition by RAF
The Pledge...
training on stigma and discrimination
I
t is becoming increasingly evident that the stigma and resulting discrimination toward people who inject drugs (PWID) has negative consequences, not least of all on access to and uptake of health services. In fact, stigma and discrimination has a direct correlation to bloodborne virus transmission and the reuse and sharing of used injecting equipment. It has also been shown that many PWID delay and/or avoid seeking treatment (including treatment for viral hepatitis) until their condition is extreme, rather than be labelled as a “junkie” or “druggie” and be treated in a discriminatory manner. The NSW Users & AIDS Association (NUAA) is offering free training workshops, “Stigma, Discrimination and People Who Inject Drugs”.
The workshops are open to any workers within the health and community sectors. Workshops can be tailored to meet the needs of your organisation and can run from an hour to a half-day. The sessions address stigma and discrimination as they related to PWID, how these issues manifest in the health care system and broader community and also offer strategies to address and challenge PWID-related stigma. These sessions are non-judgemental, practical and interactive, utilising real-life experiences underlaid by contemporary research. • If your organisation would like to organise for NUAA to attend a staff meeting or arrange a session, please contact Fiona Poeder at fionap@nuaa.org.au or (02) 8354 7300. Also see page 22.
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eone ainst som is ination ag ainst the law. Th l, discrim is ag C p In genera he ey have th e us beca ple for exam includes: tion oyment, n they s of empl ng for a job, whe treated pe is Introduc ty t ne os eo yi • in m is appl e g a job. hen som occurs w people in the sam r someone are leavin n n io ey he at th w in n la Discrim b or whe an other a particu tting a urably th are in a jo cause of . d from ge less favo ances be as having hep C prevente have r circumst use they meone is such ca so , n be ve d or simila he ha w • l duty to smisse n is ristic they otion or di s also have a lega cilities riminatio characte om sc pr di d fa er te mploy C rela e virus, special s for hep hep C. (E with any racting th the (the The basi ployees ar of cont them do drug use oples’ fe er provide em they need to help lia). injecting ra st ds e employ usually pe ar Au w es e in to ic our caus th ude serv vi ’t tit or ha at on r be w ei k it as or th ng sion ris lo y is er m as rg ns ip’). job, ntist su primary tra ble hardsh at nds a de t types of ‘unjustifia entions th oan’ atte e to get mos banks, shops, rm and m ample, ‘J As an ex aiting fills out a fo an that sh eone tries m Jo m so lls n te w ch as fro en whe le th su t. t , hi • is en w es nt d ic tm rv de an ents. e se poin t departm goods or hep C. Th the day’s last ap nst Joan vernmen she has alth wait until scriminating agai bs and go eking he to pu se d ve is an ha will user be di hep C er ist could is a drug rson with d to prop pe le s/ a tit hi n en at That dent pposes that Joan he e th ls and ar • w su es for fear ed and ices, they m doctors, hospita t be if he/she at rd practic care serv d will no ment fro ar n-standa become contamin tients or at no Bo tre e ts al th op ad ht r pa medic cases, ng to do pace mig on to othe (In some ple anythi her works dentists. be passed e, for exam child custody or C might to interven ch as le that hep su ab s, e on f. ar ” rsel t decisi ocedures himself/he with cour ements). control pr se procedures infection e settl he
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
Hep Review magazine
Edition 83
March 2014
27
feature
Hep health promotion conference 2013 Helping to “break down the barriers”, the Viral Hepatitis Health Promotion Conference drew health workers and community members from across Australia. Rob Wisniewski reports back on this important event.
A
t first glance a conference on hepatitis health promotion may not sound like a grab-bag of great ideas and inspiration, but it’s a rule of thumb that first glances often don’t see the whole picture. Breaking through the Barriers – the 2013 National Hepatitis Health Promotion Conference is one that we always look forward to. It’s the National Hepatitis Health Promotion Conference organised by Hepatitis Australia every two years. In 2013 it was held in Sydney on the 14th and 15th of November with the theme ‘Breaking through the Barriers’. Unlike some other conferences on viral hepatitis that are often very medical, this one is close to our hearts as it has the community element right in the centre. Representatives came from our partner hepatitis organisations from other States and Territories as well as from other organisations that work with people affected by viral hepatitis around the country. We had a strong representation at the event - a good mix of project officers, Board members and sessional workers. We delivered four presentations on the work we do at Hepatitis NSW: • Kerry Walker talked about our Your Mob, My Mob, Our Mob hep C prevention project for young Aboriginal people in partnership project with Aboriginal Health & Medical Research Council • David Pieper presented on the work of our C me advocacy program to tackle hep C stigma and discrimination. • Bruce Cherry delivered a thorough insight into our Drawing Them In project – the creative process involving people living with, or at risk of hep C to produce our quarterly Transmission Magazine.
from a creative media agency about successful social campaigns. Be risqué and edgy when you design an awareness campaign, be truthful in your message and give people reasons why they should change their behaviour or habits – check out www.thisismamming.com – a very successful campaign. There were also some useful tips around lobbying work for those who work or are interested in advocacy – do your homework, know what you want to achieve, target the right politician or decision maker and let them know how investing their time in your campaign will benefit their interests. For the first time in the history of this conference there was a special focus on hep B and its prevention amongst the priority populations – mainly culturally and linguistically diverse communities (CALD). There was widespread agreement about the need for strong and effective advocacy for increased funding for hep B programs. Many organisations from all the States and Territories presented on their innovative hep C prevention or support programs working with the priority populations. Increasingly, projects are being built using a partnership approach and creative evaluation methods. There was a block of presentations of successful services that were established with virtually no funding attached. We need to remember that the sector must be well funded in order to continue big scale programs. A big emerging group that the sector needs to support more are people who inject performance and image enhancing drugs (PIEDs) – in some NSPs in NSW they account for 25% of clients.
• Shae Clayton-Freedman presented on the new NSW Going Viral partnership between HNSW and five LHDs – hep C prevention program targeting young people.
Another theme that continued to be present throughout the conference was the appreciation of the community input in all services provided for people who live with, or at risk of hep C and B. Real stories, the human touch are indispensable in our work. We cannot be effective without the involved communities – only then can it really work!
One of many highlights of the conference was the opening plenary with a very inspiring presentation
• Rob Wisniewski is Programs Coordinator at Hepatitis NSW.
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advocacy
Viral Hepatitis Affects All Parts of NSW With hepatitis B and C affecting people across the state, services must be accessible to all people irrespective of where they live, Alastair Lawrie writes.
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he NSW State Government is currently developing a Rural Health Plan to help coordinate its approach to health issues across rural and regional NSW. As part of this process, the Ministerial Advisory Committee for Rural Health released a NSW Rural Health Plan Issues Paper for public consultation. Hepatitis NSW lodged a lengthy submission in response to that paper.
80.2 (compared to a state-wide average of 50), with Western and Far West NSW second and third. These figures show that, as with hepatitis B, the hepatitis C epidemic is truly a state-wide phenomenon.
Image via www.resources.nsw.gov.au
The main thrust of our submission was that both hepatitis B and C are issues which affect all parts of NSW, and not just the Sydney metropolitan area. Which means that services which aim to prevent hepatitis B and C transmission, as well as providing essential services to people living with viral hepatitis, must also reach all corners of the State.
...the six geographic LHDs with the highest hep C notification rates were all in rural and regional areas. It was recently estimated that, in 2011, around 77,000 people in NSW were living with chronic hepatitis B. This figure was broken down further, according to Medicare Local. For example, it was estimated that 3,265 people were living with chronic HBV in the North Coast Medicare Local; 1,271 in Southern NSW; 1,450 in New England; 1,293 in Murrumbidgee; and 1,956 in Western NSW. In the Far West Medicare Local, despite the small overall population, it was estimated that 408 people were living with chronic hepatitis B, and on a population basis that was above the statewide average. In Far West, 58% of the people affected are Aboriginal and Torres Strait Islander. Across NSW, that figure is 8.3%, confirming that chronic hepatitis B has a disproportionate impact on Aboriginal and Torres Strait Islander communities. In terms of hep C, there currently aren’t equivalent estimates of numbers of people affected according to the geographic region they live in. However, there is data, up to 2010-11, which shows the notification rate for hep C per 100,000 people, based on Local Health District (LHD). It shows that, in 2010-11 and based on twoyear averages, the six geographic LHDs with the highest hep C notification rates were all in rural and regional areas. Northern NSW was highest at
In our submission, we made a variety of recommendations to help ensure that the NSW Rural Health Plan responds to the challenges posed by viral hepatitis. These include: • Identifying NSP access as a priority for all people in rural NSW, including identifying and closing gaps where they exist • Ensuring that people at higher risk of hepatitis B transmission have access to catch-up vaccination • Ensuring that transport schemes operate effectively so that people living with chronic hepatitis B and C can access Liver Clinics • Ensuring that all people have access to Fibroscans • Working to reduce the stigma and discrimination experienced by people living with viral hepatitis in rural NSW, including in health care settings. It is unclear when the final NSW Rural Health Plan will be released, but we will provide an update when it is made public. • Alastair Lawrie is Policy & Media Officer at Hepatitis NSW. Also see page 11.
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The empowering effect: financial counselling and support Writing in Flipside magazine, Garry Rothman, Financial Counsellor at Odyssey House Victoria, tells us all about financial counselling and support. What does a financial counsellor do? Financial counsellors in general deal with people who are in financial stress and have debt related crisis or some debt related legal issues. Our job is to tease out what the options are for the client, so that the client can make an informed choice about what they want to do. Where we can, we assist them to put those choices into practice. For instance, somebody might have a whole lot of infringements and there are a number of available options to deal with them. They can make an instalment plan, or do nothing, or be arrested and go to jail to pay it off. But they can also make an application for special circumstances. Of course, going to jail is not a very good option, but some people might choose to do that. At least the person is making an informed choice. If they decide to make a special circumstances application, then I can tell them how they can go about doing that. We can also negotiate for waivers of debt, where people have long term illnesses and there is no way that they will ever be able to repay debts. We sometimes request a credit provider to take into account these circumstances and to waive the debt. Our role is to empower people by letting them know what their financial rights are and the right language to use in dealing with bureaucracies and financial institutions. The reality is that a lot of people are not listened to properly when they are dealing with bureaucracies. For instance, somebody might have the threat of having their gas and electricity cut, and they might be in hardship and they might say that they can afford only $20 a fortnight for each. The gas or electricity company might say that that’s not enough and that they want $100 a fortnight. If someone is on Centrelink benefits, such repayment is unrealistic. Then that person comes to a financial counsellor. The counsellor does an assessment, calls the utility company and says all this person can afford is $20 a fortnight for each, and the company agrees to it. Therefore that person is just being marginalised and ignored, because I have just negotiated the same conditions that they had
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offered. They’ll listen to me, but not to them. And that’s really disempowering for people. What do you think is the reason for that? Do service users not have the right language? This happens to many marginalised people. It’s about knowing what your rights are. For example utilities can only demand that you pay according to capacity you have to pay. I will sometimes get a client to ring up and make that arrangement and I tell them “if they say no, you have to pay more, say ‘look, that’s all I can afford. I’ve been to the financial counsellor, where I’ve worked out my budget, and that’s all I can afford’.” And they should accept that. In dealing with any bureaucracies, whether a bank, utility or any credit provider, you need to use certain key words like “I am experiencing financial hardship” or “I am experiencing financial difficulties”, instead of “I can’t pay”. It’s really important to use the right terms. It’s the little key that opens the door. You mentioned that financial counselling is not only for drug and alcohol clients. There are a number of financial counselling agencies across Australia. All financial counselling is free of charge. One of the problems that I have is that I am the sole financial counselling worker at the Odyssey House, so I am overbooked and at this time I can’t provide appointments for almost two months. The case work is very complex because people usually don’t present with only one, but with multiple issues. So it involves communicating with various health professionals and getting documentation from them, then making the various applications, using that documentation in support of applications, making a special circumstances case and so on. What are the most common issues for people who are clients of drug and alcohol services? I would say that there are a number of common issues for people who are AOD clients. Probably the most common one is outstanding fines and infringements. Another really common issue in our practice is fringe lenders, like Cash Converters or pawn brokers. Also issues with debt collectors, unpaid credit cards and loans, threats of
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“Often people will try to self advocate...but the reality is that a lot of people are not listened to and aren’t heard when dealing with bureaucracies” disconnection of gas, electricity and water, and wanting to access their superannuation. We have clients with the whole range of problems – from somebody who has no assets and no income apart from Centrelink to someone who had a good income and has assets, like a mortgage, and can no longer pay it, because of their drug and alcohol issues they had to stop working. These last examples are really the most complex cases. If somebody loses their job, or temporarily has to stop working to attend treatment, we make applications for hardship for periods where no payments need to be made to protect the asset. That’s another area altogether. Drug and alcohol issues can hit people of all socio-economic backgrounds and we don’t distinguish between those people. I am currently advocating for someone who’s got a mortgage on a million dollar house, but because of their drug and alcohol problems they’re not able to maintain the repayments. But even if they’ve got a million dollar home, if they’ve got no money and they’re on Centrelink benefit and they’ve got a drug problem, then their problem is just the same as anyone else’s. So I will advocate on their behalf.
mage by betta design. Via flickr.com
Here in Victoria, one of the most common issues is infringements (fines). I’ve had clients with up to $100,000 in infringements, and that can be a combination of public transport fines, traffic offences and parking offences. You can have a mix of all of those and the longer you leave them, the bigger they get. The good news for our Victorian clients is that special circumstances application can be made for infringements. The criteria for special circumstances is one of the following: severe drug and alcohol addiction, mental illness or
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feature homelessness. You only need one of those where you can show that the condition in question contributed to that person incurring in infringements or not understanding their actions. Obviously, some of our clients have all three of those special circumstances. For a lot of my clients it’s very messy. They have a lot of fear because they have a lot of outstanding infringements. They might have their license taken off them. If it gets to warrants stage, the Sheriff can suspend people’s registration, stop them from selling their car and suspend licenses. This means that people might be driving unregistered cars or driving unlicensed, so then they incur in further infringements. It just all compounds itself and gets more and more messy. In NSW, the State Debt Recovery Office (SDRO) takes a different approach to infringements and debt and uses Work Development Orders. These orders allow eligible clients to reduce their
“I would suggest that people ring the national Credit and Debt Hotline: 1800 007 007 and to find out more about financial counsellors, visit http://tinyurl.com/mhww364 “
fines through unpaid work with an approved organisation and through certain courses or treatment. Eligible clients include people with a mental illness, intellectual disability or cognitive impairment, people who are homeless, people who have a serious addiction to drugs, alcohol or volatile substances. For more information, check out the SDRO Work and development order factsheet: http://tinyurl. com/mj28cmv or this YouTube: http://tinyurl.com/ mbg4k38 The important thing to realise is that people do have options to resolve financial hardship and infringements before things get to court. We’ve talked about specific options in Victoria and NSW but for many people there is bankruptcy. It sounds harsh but it is a common remedy for people who have debt, poor income and no assets (although fines cannot be included in a bankruptcy). Financial counsellors are well placed to discuss bankruptcy and unlike commercial debt consolidation advisors, a financial counsellor will provide the advice for free.
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Does it get harder second, third time? I’ve often gone to court with a client and the magistrate said to them “well, what do you want me to do? You’ve made this application, I’m prepared to waive these fines, but you keep getting more. This isn’t a right to keep breaking law”. For us to get a good outcome the person has to stop thinking that it’s okay to keep getting more fines. Sometimes there might be some still in the pipeline and we can make a second application for that, and the courts understand that at this time there are still outstanding infringements, but what they are looking for is a change in their behaviour. How can people access your service? Usually people access my service here if they’re engaged with a drug and alcohol treatment service. They can ask their counsellor to make a referral to me. Otherwise, I would suggest that people ring the national Credit and Debt Hotline: 1800 007 007. To find out more about financial counsellors, visit http://tinyurl.com/mhww364 We also find that many people with alcohol and drug issues also have gambling issues and there are gambling specific financial counsellors who can assist them. Sometimes people may have drug and alcohol addiction, but their main financial problem might be caused by their gambling. So I would suggest that those people seek a gambling financial counsellor. How did you start doing this job? I had worked in private industry before, and then I decided that I wanted to do something that is of benefit to people. I realised that there was a big gap in service provision in the drug and alcohol treatment sector, because there was no one providing a service to deal with people’s financial issues, when it’s such an important area of people’s recovery. It’s just so overwhelming for so many people and they don’t know where to start. It keeps so many people in that spiral of using because they continually feel marginalised and victims of the system. So I did a diploma in community services, major in financial counselling, which is run by the peak body for financial counsellors through Victoria University. It’s a very good two-year part-time course. I also had financial background, so I could use a lot of that experience in this job.
feature Is there any particularly successful case that you feel proud of? People often don’t know that they have insurance attached to their superannuation, usually three kinds of insurances: death insurance, income protection and total permanent disability insurance. This is on top of what they have in their superannuation. Some people will have income protection insurance attached to their superannuation, which means that, if they had to stop working because of an illness, they’re entitled to two years of the 70% of the income they were earning at the time when they had to stop working. For instance if somebody suffered from depression or from a drug issue, and had to stop work to seek treatment, and they had income protection insurance, earning $1,000 a fortnight, they would possibly be eligible for up to $700 a fortnight, depending on the level of cover, for up to two years. Their Centrelink benefit would be affected, but wouldn’t be totally wiped out. The other kind of insurance is total permanent disability. Here, I had a client who had a mental illness and cancer. She worked as an air-hostess for Qantas and had to stop working due to her illness. Qantas had paid out her disability payment, but they hadn’t paid out her total permanent disability that was on her insurance. This woman got legal advice and her solicitor said that she hadn’t qualified for any further payment.
Subject image by Pulpolux !!! via Flickr.com, background by Paul Harvey.
She then came to me to help her negotiate the payment plan on her mortgage, because she was behind. She didn’t ask me to do anything on her superannuation. It was only while going through her superannuation that I had realised that there might be a claim to be made. We got solicitors involved to act on her behalf and we pursued the total permanent disability insurance. We were very successful in this case and the client got their payout of $400,000. • Abridged from Flipside ED34: http://tinyurl. com/mbwmkz7 People can ring the national Credit and Debt Hotline: 1800 007 007. To find out more about financial counsellors, visit http://tinyurl.com/ mhww364
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BE SMART ABOUT BODY ART Young people’s awareness of viral hepatitis and prevention is generally poor. One in ten new hepatitis C infections are diagnosed in people aged 19 years and below. Read here about an innovative project in the ACT.
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e Smart About Body Art is a new resource designed for teachers and youth workers to help them support young people’s learning about hepatitis awareness and prevention. The resource: • responds to identified gaps in students’ knowledge of hepatitis transmission • encourages learning about hepatitis and other blood-borne viruses (BBV) in a manner that engages and is relevant to young people • addresses the transmission risks associated with body piercing and tattooing. Body art is used as an age-appropriate way to engage young people with concepts of skin penetration, blood awareness, hepatitis awareness and safe choices. The kit provides information for educators, information for students and a range of learning activities and presentation slides that are designed for use as teaching materials. Be Smart About Body Art was piloted in six ACT high schools in late 2012 and launched in June 2013. Darryl Stuckey (Executive Officer of the ACT Curriculum Support Office) said “this is a fabulous resource developed locally, very student engaging and teacher friendly”. The ACT Hepatitis Resource Centre developed Be Smart About Body Art with support from the ACT Health and Education departments and with the assistance of Hepatitis Victoria. Viral hepatitis and Young People Australia faces a continuing hep C epidemic and rising incidence of hep B. This situation has particular implications for young people. One in ten recent hep C infections are diagnosed in young people aged 19 years or under, yet young people in Australia generally continue to have a limited knowledge of hepatitis awareness and prevention. We know this because in 2008, the last time the National Secondary Students Sexual Health Survey asked about viral hepatitis, the results indicated that hepatitis awareness and knowledge
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of risk factors amongst young people is generally poor. The study surveyed 3,000 year 10 and year 12 students and found that: • 89% were unaware that there is no vaccine for hep C • 45% wrongly thought that they were vaccinated against hep C • 43% did not know that hep C could be transmitted through tattooing and body piercing • 41% did not know that hep B could be transmitted sexually • 44% did not know that hep C could have long term health effects • 70% did not know that hep C could be transmitted through sharing razors and toothbrushes. John Didlick, Executive Officer at Hepatitis ACT describes one of the challenges for hep C educators working with young people: “When up to 50% of the target audience mistakenly believe they’re vaccinated for hep C, the prevention seeds you’re trying to sow can fall on barren ground.” “With generally poor levels of hepatitis awareness and the increasing prevalence of tattooing and body piercing (including “backyard” and “do-ityourself” jobs), it’s probably not surprising that one in ten new hep C infections are diagnosed in people aged 19 years and below,” he said. Along with unsafe injecting practices, tattooing and body piercing are among the key hepatitis transmission risks for young people. Yet 43% of young people surveyed were unaware that hep C could be transmitted these ways. Do-it-yourself tattooing kits can be purchased for a little as A$50 online – and piercing needles from $20. “Do-it-yourself” tattooing seems to be an increasing trend. Young people are also increasingly heading overseas for “Schoolies Week” and for cheaper tattooing. This presents a new frontier of risk for young Australians.
Image by Paul Harvey.
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Learning About Hepatitis in Schools The Spring edition of Hep Review (ED81), carried an article called “A Schooling in Viral Hepatitis” in which Alastair Lawrie described the advocacy campaign for BBV education to be included in the new national Health and Physical Education curriculum. The push for curriculum inclusion was lead nationally by Hepatitis Australia and echoed across jurisdictions by state and territory hepatitis organisations. This is important action, as a 2013 survey of ACT Health and PE Teachers demonstrates. Hepatitis ACT surveyed 108 Health and Physical Education teachers about the place of hepatitis education in ACT schools. We believe this is the first survey of its kind in Australia and is therefore an important contribution to knowledge about BBV for young people. The findings provide new information about high school Health and Physical Education teachers and their: • knowledge of viral hepatitis and other BBVs • preparedness to incorporate hepatitis education into their teaching • current practice • perceptions of enabling factors and barriers to students’ learning about hepatitis and BBV awareness • perceptions of educator responsibilities with regard to students planning or engaging in BBV risk behaviours • awareness of sources of information, referral and support
• knowledge of the law relating to BBV risk factors among young people, specifically tattooing and body piercing. ACT Health and PE teachers overwhelmingly (97% of respondents) believed that schools have a responsibility for education about viral hepatitis and other BBV. Despite this near unanimous perception, less than half of respondents (45%) reported that they were able to incorporate hepatitis and other BBV awareness and prevention into their teaching programs. Just 10% of educators had received training in these areas. Major barriers to addressing hepatitis and other BBV education in the classroom were identified (see full report). The survey findings demonstrate that teachers, with the appropriate supports and resources, are willing to help young people learn about viral hepatitis and other BBVs. They want students to make healthy choices in relation to these issues. The Way Forward While we wait for the Australian Curriculum Assessment and Reporting Authority to address the lack of curriculum-level focus on viral hepatitis, Hepatitis ACT has responded to local need by developing and distributing the purpose-designed Be Smart About Body Art. The resource has been provided to all ACT secondary schools and many youth programs and alternate education providers. • For more information, contact Hepatitis ACT at business@hepatitisresourcecentre.com.au or on (02) 6230 6344.
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my story
My story: Hep C, prison, treatment and renewal An interesting, smart, reflective man with a cheeky smile and a life history plenty colourful is telling his story. He is twenty something and nearing the end of a prison sentence at the Alexander Maconochie Centre (AMC) – the ACT’s prison. Youth, drugs, crime, disease, and prison are predictably all parts of this story. The twist in the tale is less familiar and more positive – recovery, personal growth, hope and love. These are his words.
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would do it again you know – hep C treatment – if I had to. The hepatitis nurse told me the sideeffects might be difficult but a long-term hep C infection isn’t pretty either. Some people get very unwell and I know it can end in liver failure and liver cancer. That’s what killed Chopper Read. A week before I wrote this story Mark “Chopper” Read had died. Depending on whom you ask, Chopper was a celebrity, a reformed criminal, an artist and entertainer, a father or a taxpayer. He died of liver cancer resulting from hep C infection contracted in prison years prior. His disease was preventable, as was its progression to serious liver disease and an early death. Sadly, others will go that same way, unnecessarily. Considering treatment I contracted the virus at the age of 17 and was diagnosed about a year later in Canberra at a residential drug treatment service for young people. I was lucky to be diagnosed early I suppose but like many people with hep C my diagnosis didn’t lead to the offer of treatment. Another year later I was starting a prison sentence at the Symonston Detention Centre [the predecessor to the Alexander Maconochie Centre] when I bumped into the hepatitis nurse who did my liver health assessment. She convinced me that my prison sentence was a window of opportunity in what was an otherwise chaotic lifestyle. It could be the best chance I had to treat my hep C. Genotype 3 meant I faced six months of treatment with a combination of Interferon and Ribavirin. I knew that the next six months would be tough but being treated in prison offers benefits over
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being treated in the community. For a start, I had support structures in place in prison to help me deal with the side-effects. In the community I would have had better access to illicit drugs and I knew they would look more appealing than Interferon if I got sick. I decided to go for it while I had the chance. Undergoing treatment Other prisoners were a big support. People knew I was struggling and helped me out. Sometimes they made sure I ate when eating was the last thing on my mind. Treating prisoners for hep C in the ACT was a new thing at that time, so I felt like a guinea pig in some ways. For example Justice Health didn’t really know how best to support my loss of weight and appetite, so they gave me Sustagen and told me I could drink some salt water to replace minerals. My weight loss was dramatic and I bottomed out at around 49kg, having lost a third of my body weight. Aside from weight loss, fatigue was the hardest thing to deal with. Sometimes I had just enough energy to clean my cell. I was into weight training and fitness back then, but I couldn’t maintain that routine due to treatment side effects. My muscle mass just slipped away but there seemed to be a clear choice between keeping body weight and beating hepatitis C. I knew that to beat hep C I needed to choose the thing that was most important. It also helped to remind myself that some people have a worse time on treatment than me. After five weeks of treatment the virus was undetected and I really wanted to stop. The Health staff encouraged me to continue though, to give myself the best chance, and I knew it was the right thing to do. Thankfully treatment was successful, and two or three months after completing treatment I was feeling “normal” again. Staying hep C free Preventing reinfection is now the critical thing for me, and since finishing treatment I have declined every opportunity to share needles with other people in the prison. I remain vigilant about the risk factors. As prison is such a high-risk place, I get tested periodically to assure myself that I’m
my story still clear. It’s not always as easy as it should be to access testing though, and both Corrective Services and Justice Health can create barriers for prisoner-initiated testing. You shouldn’t ever have to give a reason why you want to be tested for hep C in prison. That’s just unnecessary. In the Alexander Maconochie Centre there are a lot of blokes with hep C. I’m told that access to treatment is better in prison than in the community, but there’s only about ten people getting treated at any time in here so access to treatment in the community must be pretty poor. It would make sense for more people to be getting treated for hep C in prison. A needle and syringe program could prevent infections and reduce sharing, and most prisoners support the concept. Many prisoners have a good general knowledge about bloodborne viruses. Awareness and knowledge about treatment for hep C is generally low, but most know about transmission risks. Unfortunately for many people in prison the immediate benefits of using drugs outweigh the immediate benefits of hep C prevention. People don’t have good access to clean injecting or tattooing equipment and access to bleach is usually poor. If the cost of providing bleach is the reason why it’s so hard to get, they should make it available through buy-ups. People would pay for better access. Would I recommend treatment? Sometimes people ask me about my treatment experiences and whether it was worth it or not. I’m happy to talk about treatment and hep C. I hope that my story can help other people. There are people in prison with hepatitis C who won’t consider treatment because they think they’ll have twelve months of hell in front of them. Sure, the side-effects aren’t the best, but they’re sometimes exaggerated. Like I did, people considering treatment need to weigh up the odds…will you lose from doing treatment or will you gain from doing treatment? In prison, most people have fewer responsibilities than on the outside. It would be much harder doing treatment and having to go to work, pick the kids up, and manage life in the community.
When I came into prison I had hepatitis C, and I’ll be going out without it. I know plenty of people unfortunately who do it the other way around, so it’s a good feeling to know that I’m bucking the trend. It’s also good to know that I’m not a transmission risk any more. I’ve got a daughter and lots of nieces and nephews, and I can’t wait to get physically involved in their lives again. Playing sport and games, rolling around in the park, and not having to worry about scratching myself and potentially exposing them to infection – I know there’s a very low risk from that sort of stuff, but it weighs on my mind. Freedom My daughter and I have an amazing relationship now and I’m working towards resuming custody after I’m released. She’s only young and she lives with my mother. We get to see each other often and we speak on the phone a lot too. She’s one of the reasons why I’m loving life. Some people wouldn’t think I could say that, being locked up in here, but it’s true. I completed a drug treatment program in prison and have been abstinent from drugs for the longest time since I was 16 years old. I have self-esteem and the respect of others. I get treated differently now I think, and I have my health back. Looking to the future, I just want to have a normal life. My vision for the next ten years is to remain drug free, hep C free, and to stay out of prison. I can see myself having a tidy place to live with my family around me. Stable employment will be an important part of the picture too. I’m not looking to create anything extravagant … just a humble, healthy and happy existence. • Anonymous, ACT (story as told to a prison visitor).
NB: If you are in custody and would like to be assessed for hep C treatment, see your Health Centre nurse.
Image by tiparadis. Via flickr.com
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the Canberra Opioid Treatment Service: a community health project Recognising that services must meet clients’ needs, the Canberra Opioid Treatment Service recently began a weekly bloodborne virus clinic. Here, the team report on that process.
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he Opioid Treatment Service (OTS) at Canberra Hospital & Health Services provides daily opioid replacement therapy for around 200 clients. These are people who often have a history of injecting drug use – or currently still injecting drugs – and therefore are at higher risk of blood borne virus (BBV) transmission and infection.
OTS nursing staff are offered venepuncture training and education sessions focusing on BBV screening.
People accepted into the program have an initial medical assessment. They are offered baseline BBV screening which is handled by ACT Pathology, a 10 minute walk from our service.
Results from the project
A review in March 2012 found the majority of clients didn’t attend the pathology services for testing and their BBV status was unknown.
[26 clients were hep C antibody positive but of these, only 13 were PCR positive] A month later, in April 2012, we formed an agreement with Clinical Forensic Medical Services and the Canberra Sexual Health Centre to provide onsite BBV and sexual health screening for our clients. This change aimed to increase: • uptake of BBV screening • hepatitis B vaccination • blood taking skills amongst OTS staff • knowledge of sexual health screening, BBV pre test discussion and BBV screening for OTS staff. An onsite BBV and STI clinic is now run every Tuesday by a sexual health nurse with services available to all OTS clients and patients of the onsite alcohol and drug withdrawal unit. Posters promoting the screening clinic alert clients to the availability of the service. Occasionally morning teas are run to not only promote the clinic but to also provide healthy snacks while clients chat with the nurse. The screening clinic is overseen by specialists at Canberra Sexual Health Centre who are available to the nurses for further support and clinical management for clients when required.
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The clinic nurses and the overseeing specialist are responsible for providing test results back to those clients seen at the clinic.
Over a 12 month period to April 2013 we screened 76 clients finding: • three positive for hep B • 26 positive with hep C antibodies, of which 13 were PCR positive • one client coinfected with heps B and C • five clients were referred to the Liver Clinic for specialised viral hepatitis care. Within the 12 month period, 29 of the 76 clients screened were shown to be not immune to hep B. Seven of these clients commenced a course of hep B vaccination. The screening clinic has been popular with many of the OTS clients and generated 14 referrals to GPs for other general health concerns. Many of the OTS nursing staff have completed venepuncture training, resulting in onsite availability of BBV screening. Where next? The BBV clinic nurses are seeking funding to support a program to increase uptake of hepatitis B vaccination among these clients. It is hoped that voucher incentives will encourage OTS clients to commit to the completion of a hepatitis B vaccination schedule. This incentive program will be offered to all current clients at OTS and provide a starting platform to ensure all OTS clients are vaccinated against hepatitis B in the future. • Catherine Brown, Tasha Lutz, Zakia Ali, Cathy Billing, Cassandra Beaumont (Nursing Team – Clinical Forensic Medical Services).
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First step illawarra turns twenty five
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Guests gave humorous reflections on the work of First Step over the years. We recognised the work of past and present staff, with workers receiving anniversary gifts that acknowledge their contributions. In true First Step style, this was interspersed during the night with videos and presentations showing highlights and embarrassing moments over the years. The marking of such a milestone of course relies on support, and it is important to recognise the incredible contributions of Jennifer Farinella (Manager HARP Illawarra), Nadia Sneydmiller
Image provided by First Step.
n 7 November, the First Step Program (Illawarra) celebrated 25 years of needle exchange with a dinner at the Sebel Kiama. It was a great occasion with nearly 80 guests in attendance, including local supporters, consumers, and current and past workers. Our VIP guests were Gino Vambucca and Kate Dolan who, along with Alex Wodak, were responsible for establishing Australia’s first – and illegal – needle exchange in Sydney in 1986. (Healthy Cities) and David Reid (Director Drug & Alcohol ISLHD) in keeping us happening. First Step’s vital statistics: Annually over 675,000 pieces of equipment are provided of which over 404,000 are returned. Over 140 talks/health events are run. Work with consumers involves providing nearly 1600 support interventions and just under 500 referrals to treatment and other services. • First Step Program, Illawarra.
Hep Review magazine
Edition 83
March 2014
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feature
interview with a virologist: Eric Gowans talks tiny things Speaking to Adrian Rigg, Professor Eric Gowans, from the University of Adelaide, says that the hep C virus only affects humans because it has evolved with humans over thousands of years. Read more about the background of hep C virus. ow many angels can stand on the head of a pin? This age-old question has been debated many times from many different angles, and there is no real answer. Almost as hard to measure is the number of hep C virus particles that could fit onto the head of a pin, although it would be millions. The virus is about 50 nanometres across – a nanometre (nm) is a billionth of a metre. A hair is about 100,000 nm wide, so you can see that the hep C virus is very small. What does the hep C virus look like? The hep C virus was first noticed in the 1970s. Hepatitis A and B were already known when a different type of hepatitis virus started to affect people who had blood transfusions. At first it was called non-A non-B hepatitis. In 1989 it was identified and named separately...hepatitis C. The hep C virus is so small that it cannot even be seen using a normal microscope. If you could see it, you would find that it is quite meanlooking, with spikes on the outside. Inside it contains its genetic, or characteristic, material. This determines which genotype of hep C virus it is. It is important to know which genotype a person has because the genotypes affect people differently, and the treatment is different for each one. In Australia, the most common genotypes of hep C are (in order) genotype 1, genotype 3 and genotype 2. Similar names, different viruses Hepatitis A, B and C are different viruses but they all affect the liver; the name comes from “hepatic” meaning related to the liver. They are named for the order in which they were discovered; but while they sound similar, they are all separate viruses. Having one doesn’t necessarily mean that you will have the others; you can only tell if you have any of them by being tested by your GP or liver clinic. People can have more than one type of hepatitis at a time. For example, hep B and hep C can be transmitted in the same way, so you could get both
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at the same time, or at different times if you do the same risky behaviour again. Hep C can only be spread by blood infected with the virus coming into contact with your bloodstream, so it is more difficult to get than hep A or hep B. The blood contact only needs to happen once for hep C to get into your body; of course the more times you come into contact with another person’s blood, the more chances you have of being infected with hep C.
It is actually the human body’s response to the hep C virus that damages the liver. The immune system tries to fight the virus, causing the liver to swell. This swelling damages liver cells. The liver can make new cells to replace the damaged ones, but it can’t always work as fast as the hep C virus does. Professor Eric Gowans, from the University of Adelaide, explains that the hep C virus affects only humans because it has evolved over thousands of years as humans evolved. There are similar viruses which affect species other than humans, but they are slightly different to the hep C virus. “It is now recognised that there are several hep C-like viruses which infect a range of animals including mice, horses and dogs,” says Professor Gowans. “These viruses have evolved with their host, so that they are host-specific.” This means that they can’t affect any other species. Hep C is still widely misunderstood Hep C still has a lot of mystery around it because it is not talked about much. There are many mistakes made about hep C – here we bust some common myths: Myth: Hep C is caused by drinking too much alcohol. Reality: hep C is caused by a virus. It has to be caught from another person’s blood. The
Image by jiparis. Via flickr.com
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feature
myth that hep C is caused by drinking too much alcohol may have come about because alcohol affects the liver, and so does hep C. Myth: Everyone who has hep C has a drug dependency. Reality: hep C is spread by bloodto-blood contact. This could be, for example, by a razor blade, a tattoo needle or piercing needle, an injecting needle, or in the past, a blood transfusion. This only has to happen once. Some people may do one or more of these activities, even if it is only one time, and get hep C. Hep C can also be passed from a mother to a baby before or during birth, but this is not common. Myth: Hep C can be spread by sex. Reality: sexual activity does not usually have blood present. If blood is present, then there is a risk of spreading hep C. Myth: Liver damage is permanent. Reality: the liver is a wonderful organ. It can grow back if part of it is cut out and it can heal minor damage by itself. If the liver becomes scarred (cirrhosis) it is possible it can heal itself following successful treatment, but this depends on a person’s stage of cirrhosis. Myth: Having hep C means that you will get liver cancer. Reality: hep C affects the liver, which, in the
long term, can cause cirrhosis (liver scarring) and possibly liver failure or liver cancer. The amount of damage to your liver depends on how long you have had hep C, whether you have any other illnesses, how much alcohol you drink, your age, and other factors which affect your general health. Treatment for hep C can help avoid liver cancer. Myth: Hep C cannot be cured. Reality: hep C can be cured by treatment which clears it from your blood. There is a 70 to 80 percent chance of being cured. Even if you are not cured, the treatment will have slowed down damage to your liver. After a person has been cured, they could still get hep C again if they are exposed to infected blood; they will have the same chance as anyone else of getting hep C. Another area of confusion is vaccination. There is no vaccination for hep C. There are vaccinations for hep A and hep B, but not for hep C. Even if you have been vaccinated for hep A and hep B, you can still get hep C. People who have hep C may be told to have vaccinations for hep A and hep B. This is because getting hep A or hep B in addition to hep C could mean your liver is damaged faster, and it might make treatment more difficult.
Hep Review magazine
Edition 83
March 2014
41
Image by RDECOM. Via flickr.com
my story
How does hep C affect the human body? A person’s immune system is always working to fight infections in the body. Unfortunately, the human immune system gives a weak response to the hep C virus. Also, the hep C virus is very good at reproducing itself. It does this very quickly, and every time it reproduces it changes slightly. In this way it stays a step ahead of the immune system. It is actually the human body’s response to the hep C virus that damages the liver. The immune system tries to fight the virus, causing the liver to swell. This swelling damages liver cells. The liver can make new cells to replace the damaged ones, but it can’t always work as fast as the hep C virus does. The liver’s job is to clean the blood and take out waste; when it cannot do this properly, waste builds up and makes us sick. The waste products build up in our blood and cause jaundice (which makes the skin appear yellow), loss of appetite and other symptoms which can feel similar to having the flu. Hep C can be treated and cured Treatment for hep C works in two ways – by boosting your immune system to help it fight hep C, and by fighting the hep C virus directly.
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New treatment for hep C genotype 1 now includes three drugs: interferon and ribavirin, along with either boceprevir or telaprevir. Our bodies produce interferon naturally to fight viruses. A weekly injection of interferon boosts this to help our body fight hep C better. Ribavirin damages the hep C virus and stops it growing. Boceprevir and telaprevir also work in the body to stop hep C from reproducing. New types and new combinations of drugs are being tested to make treatment easier and reduce side effects. Professor Gowans says that treatment which can target all hep C genotypes will probably be available within 5-10 years. “Furthermore, this treatment will probably work without the need for interferon or ribavirin, and the number of pills that a person has to take will be reduced considerably,” says Professor Gowans. “Most people will probably be cured, although it is not clear if this could make them immune to hep C. This means that they could probably catch hep C again, which makes it even more important to find a vaccine in the long term.” • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com.au
Jim’s story: fairgr0und rides and magic pills
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had lived with my hep C diagnosis for 12 years. The first five of those 12, I had done little to battle the disease except to pick up slivers of hopefully useful information. It really was put into the way-too-hard basket, down the bottom of the pile of problems I had to deal with. Issues such as “How am I going to pay the rent?” and “Will I have enough left over for cigarettes?” still dominated my sad and sorry thinking back in the late nineties and early zeroes. Starting in 2001, however, I had started to really work on my various behavioural issues. By 2008 I felt I was ready to jump onto the fairground ride of pegylated interferon and ribavirin. So I felt. As a kid – say up to the age of 35 – I loved going on fairground rides. Just the sheer buzz of flying around in zig zags in a tiny cockpit, hanging for seconds which seemed like minutes upside down, or racing downhill only to be suddenly on an uphill trajectory. Not for vomit-inducement, but for hair-raising head thrills. In the distant, dark 1980s Nancy Reagan had advised all of us young ‘uns to “just say no”. Like most wise arses I’d retorted with a cynicism I also felt for her husband Cowboy Ronny. By the early zeroes I’d learned to bow to Nancy’s wise words. That was my door-opener, and I knew it. Just say “no”, Jim.
I’d run around in circles, chasing my own tail just like the dumbest dog in town. And knowing it... and cursing my own failure to change. Hep C treatment was a slow helter skelter for zombies. A dull and flat sleepwalk within life. Pushing buckets of shit uphill day-in and day-out. Hour after tedious, torturous hour. Still, as the chemist kept reminding me, it was cheap, so I got on with it. I’d grown up with the “old school” of child rearing. “Stop feeling sorry for yourself” and “get on with it” were golden rules. Set in stone. I’d always hated those rules, but when up against the wall, I followed them religiously. After 48 weeks I failed the treatment. Or more correctly, it failed me. Eddie Cochran said it “Learn to Listen, and Listen to Learn” and Hallelujah, the specialist rang me – which I thought was pretty personalised – and basically told me I was a loser. I’m not sitting around waiting for the “Magic Pill”, but if there’s one out there I’m by no means a reluctant customer. It’s just I’m busy working on the stuff that I used to slag other people off for... mortgages...bills...insurance policies. Just reminding myself that I actually spend money on insurance policies because for most of my life I was a “You could get run over by a bus” kind of guy. Now when I do cough up for an insurance policy, I always look left and right – for buses. • Jim Dash, NSW
Image by ant217. Via flickr.com
I’d proven to myself the old adage that “what goes up must come down” – many times over more than 20 years.
my story
Hep Review magazine
Edition 83
March 2014
43
obituary
Mark “Chopper” Read: 1955-2013
Dr Jack Fishman: 1930-2013
otorious Melbourne crime figure turned author Mark Brandon Read has died after a long battle with liver cancer. He was 58 and died at the Royal Melbourne Hospital “after a long and courageous battle with liver cancer”, his manager Andrew Parisi said.
r Jack Fishman, who developed Naloxone and Narcan, passed away peacefully at his home in Long Island [USA] on 7 December. Born in 1930, Dr Fishman fled Nazi-occupied Poland with his family and found refuge in Shanghai, China. From 1942 until 1945, he attended the Shanghai Jewish School and, in 1948, immigrated to the United States.
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Read’s death was a tragic loss for his wife Margaret and his sons Roy and Charlie. “For more than 15 years, Mark has lived a quiet life with Margaret in Collingwood. He worked as a writer, painter and public speaker, paid his taxes and took care of his family. At the time of his death, we ask that people reflect on how Mark was able to overcome his past and, after more than 23 years in prison, find a way to re-enter ‘normal’ society,” said Parisi. Read spent much of his adult life in prison for committing multiple violent crimes, and gained infamy in his younger days for sometimes using bolt cutters to remove the toes of his targets. Read was diagnosed with liver cancer in April last year and he also had cirrhosis. He said his illness started after contracting hep C while in prison. To his former publicist and friend Di Rolle, Read was simply “a unique Australian character”. “Beneath his incredible machismo was a very gentle, straight-shooting giant of an Australian man,’’ she said. “There’s only ever going to be one Chopper Read.” • Abridged from smh.com.au (9 Oct 2013) http://tinyurl.com/pov292r
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Dr Fishman rose to scientific fame for his research on steroid hormones and their role in endocrinerelated cancers. He pioneered the study of opiate antagonists and developed a number of medicinal compounds that aid in reversing the effects of narcotics, the most prominent of these being Naloxone and Narcan, life saving medicines that are now in use in hospitals and emergency rooms throughout the world. Dr. Fishman has served as consultant to a number of highly prominent institutions, including the World Health Organization, Food and Drug Administration and National Science Foundation. Among his numerous honours and recognitions, he was the recipient of the highly-prestigious John Scott Award for the synthesis and development of Naloxone. Dr Fishman never forgot his humble roots and his debt to those who contributed to his success. He endowed the Dr Jack Fishman Scholarship for Immigrant Students at Yeshiva College, the Jack and Joy Fishman Professorship at Rockefeller University, and was a generous donor to numerous causes. Dr Fishman is survived by his loving wife and partner, Joy, his brother, Jerry, five children and ten grandchildren. He will be deeply missed by his family, friends, associates and the countless number of people throughout the world whose lives he touched and changed for the better. • Abridged from legacy.com (9 Dec 2013) http:// tinyurl.com/msqr3vb
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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.
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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 7.
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 83
March 2014
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feature
Forbes hep C awareness Mural An innovative project at Forbes, NSW, aims to connect with younger people and raise awareness of hep C.
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number of years 9-10 Aboriginal students at Forbes High School have been busy creating a street art mural as part of a program to raise awareness for hep C. Image via http://tinyurl.com/lbc2lhx
The project, Your Mob, My Mob, Our Mob, is run by the Aboriginal Health and Medical Research Centre (AHMRC) together with Hepatitis NSW and aims to raise awareness and increase knowledge of hep C through peer education. The project is aimed at Aboriginal students aged 12-19, who are taught key messages about hep C in a three day workshop. Hepatitis C Project Officer at AHMRC, Lisa Panton is in charge of running the project at Forbes High with the help of Kerry Walker, the Aboriginal Project Officer at Hepatitis NSW. They say the idea of the project is that on completion of the workshop, the students will become peer educators and help to communicate information about hep C to their peers. The creation of the street art mural is part of the program and is used to continue the conversation about hepatitis. The 11 students who participated in the program designed and created the mural with the help of a professional graffiti artist. Ms Walker says that involving the students in painting the mural establishes a sense of community. “When you’ve got something like a mural that they’ve created themselves, it creates a sense of pride and having a mural that’s forever on display will continue the buzz around hepatitis,” she said. Ms Panton says the mural is a great way to reinforce the information the students have learnt and will continue to raise awareness as a constant physical reminder. “Everyone at the school was watching the mural go up and after we leave, they’ll still be talking about it, which is the idea,” she said. The women say it’s important to talk about hepatitis to help break down the stigma and shame associated with being ill-informed about the virus.
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The girl who features in the mural is Nadika VidlerMcKeown, one of the Aboriginal students who participated in the workshop. She is very happy with being chosen as the face of the mural. “It feels awesome, I’m really proud. I like being able to represent my culture with things like that,” she said. Nadika says the students all got a lot out of the workshops and learnt some valuable information that will stick with them. “They were really good, I learnt so much…it makes you think twice about some of the things you do,” she said. One of the most important things the students learnt was to avoid sharing items such as toothbrushes, razors and syringes and to steer clear of getting backyard tattoos or piercings, as these can easily spread the hep C virus. This is represented in the wall mural which will be a permanent reminder to students. At an assembly to officially present the mural to the school, principal of Forbes High, David Harris thanked everyone involved in the creation of the mural. “This is fantastic...and a very big credit to you,” he said. • Abridged from The Forbes Advocate (3 Oct 2013) http://tinyurl.com/lbc2lhx
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• Tonic water with a squeeze of lemon
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 83
March 2014
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hep chef
Peanut Butter and Strawberry French Toast
W
hen you are short of time and resources, this is the ideal recipe. It’s quick, simple and cheap to prepare and has a good mixture of carbohydrate, protein and ‘healthy fats’. And best of all, it tastes delicious.
Ingredients
You may be wondering how peanut butter can be considered a healthy food when it’s high in fat and sodium? Well we don’t eat nutrients in isolation. Taking a look at the whole package of nutrients in a food helps to determine how good it is for our health. One tablespoon (20g) of peanut butter typically contains 10.5g fat of which 2.6g is saturated fat and 8.5g is unsaturated fat. Unsaturated fat is an important part of a healthy diet and helps reduce the risk of heart disease and lowers cholesterol levels.
• 2 slices of whole grain bread
Peanut butter also provides protein, fibre and some vitamins and minerals including potassium. Sodium content is negligible if you choose healthier brands of peanut butter with no added salt or sugar. People with chronic hepatitis C infection are known to have an elevated risk for heart disease. High potassium and low sodium intake helps to reduce this risk. In addition to lowering blood pressure, high potassium intake is believed to prevent thickening of artery walls, protecting against the development of vascular damage caused by excessive sodium intake.
• 1 tablespoon of olive oil
• 1 tablespoon peanut butter • 1 egg • 1 tablespoon milk • 1 teaspoon cinnamon sugar • 75g sliced strawberries
Sprinkle half a teaspoon of cinnamon sugar over the strawberries and stir. Spread peanut butter on one slice of bread, add half of the strawberries and top with remaining slice of bread. You should now have a peanut butter and strawberry sandwich. Whisk together the egg, milk and half a teaspoon of cinnamon sugar and heat the oil in a frying pan. Dip both sides of the sandwich in the egg mixture and add sandwich to the pan. Fry until both sides are golden then remove french toast from the pan and cut in half. Top with the remainder of the strawberries and enjoy! • Provided by Emily Greenfield, Student Dietitian at The Albion Centre, Surry Hills.
Image via http://tinyurl.com/ksvvaws
Studies have shown that people who regularly include nuts or peanut butter in their diet are less likely to develop heart disease or type 2 diabetes than those who do not eat or rarely eat nuts. However, let’s not forget, fat is high in kilojoules regardless of whether its saturated or unsaturated. So for those watching your weight, limit your intake of nuts or peanut butter to approximately 30g or 1.5 tablespoons a day.
Makes 1 serve
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feature
NATIONAL DRUG AND ALCOHOL RESEARCH CENTRE
Have you been regularly using your own or someone else’s opioid (morphine-like) medicines? UNSW researchers are conducting They consist of 3 face-to-face interviews, which take 60 mins each. You will receive reimbursement for your time and out of pocket expenses. Topics include use of medication, drug use & health. We can’t interview everyone… So call 8936 1016 This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney Local Health District.
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Go in the draw for an apple ipad 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.
Background 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.
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 83
March 2014
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feature
HELLO HEPATITIS INFOLINE My doctor has suggested I start treatment for my hep C. But I’m so scared of going on interferon treatment because of the intense side effects.
you’re contending with like depression, housing or substance use. Or maybe your hepatitis is manageable and you’ve decided to wait a few years until interferon-free treatments are available.
Choosing if and when you go on treatment for hep C is a decision that only you – supported by your doctor and nurse – can make. Going on treatment can impact on your health, work, income, study, relationships and family or home life.
For many people, there’s no rush to do treatment. Your specialist can give you an idea of how your liver is going, which is one of the big factors in deciding about treatment.
Interferon-based treatment for hep C does have commonly experienced side-effects. Clinical staff are aware, though, of who will experience side effects – and when – and can prescribe medication for side-effects or change your dose.
There are a growing number of people who manage their hep C using chronic disease selfmanagement (CDSM) principles. CDSM is an active plan where you take a strong and active role in your own health care. It’s a good idea seeing as it’s your body and your life!
Some people feel fine on treatment and don’t notice many changes, but they’re a minority. Most people will experience side effects, but more people can get through it (only 11% have to stop because of side effects).
Talk with your doctor and liver specialist. Know what your viral load is and get regular liver function tests so you can track if and when any changes occur. Get annual fibroscans to monitor liver damage.
It’s a big decision that deserves a lot of thought. Talking through things with your loved ones and health professionals can help as well as some solid old-fashioned research into what options are available for you.
Talk with your doctor about other conditions you might have and think about your current lifestyle and changes you might need to make. There are lots of ways you can stay healthy with hep C. A healthy diet, getting some exercise, quitting smoking and reducing your alcohol are all things that are good for your health. Some people find complimentary therapies and meditation useful.
Remember though that current hep C treatments result in cure – your hep C is eradicated – in up to 80% of cases. Hepatitis NSW recommends that you consider undergoing treatment if it’s the right time for you. It’s important to consider all your treatment options and get well informed on the progress of your hepatitis, and any liver damage that may have occurred so far. Then you will want to weigh up everything else happening in your life. There are good times and bad times to do treatment. Some people choose to wait until work is quiet, or until their kids are a bit more independent or they’ve completed studies, for example. Treatment is not for everyone. Some people may choose never to treat their hep C and that’s OK. You might be thinking of other issues
Hepatitis NSW has a range of programs that support people making decisions around treatment and healthy living with hep C. Call the Hepatitis Infoline to talk about the Live Well, a six week CDSM course for people who are looking for ways to improve their health and well-being. Or make an appointment to speak with one of our free and professional counsellors. We also have our Hep Connect service which provides phone peer support for people living with hep C, their partners and carers (particularly for people who are considering or currently on hep C treatment. Calling the Hepatitis Infoline is a good start to getting better informed and working out a plan that feels right for you. • By Ruth Bearpark, Education and Client Services Project Officer, Hepatitis NSW.
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promotions 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 at Bond University http://hcvstudy.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
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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promotions
feature 13th Social Research Conference on HIV, Viral Hepatitis and Related Diseases. 20-21 Feb 2014. http://hhard.arts.unsw.edu.au/
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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.
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.
If the answer is yes, give the gethealthy campaign a call.
Want to find out more? Please phone the Hepatitis Infoline (see right).
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With better treatment options now becoming available, perhaps now is a good time to ask yourself, Do I want to get healthy?
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.
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.
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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
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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 Treatment outcomes for Indigenous and nonIndigenous inmates with hep C in NSW prisons: http://tinyurl.com/lfaxogu Inactivation of hep C virus infectivity by human breast milk: http://tinyurl.com/lcqzswb Immune responses in hep C exposed healthcare workers who do not develop acute infection: http://tinyurl.com/kmzwd92 Effects of lifestyle changes including dietary intervention and physical activity in the management of people with hep C: http://tinyurl.com/lmrn3e6 Treatment as Prevention: feasibility and future requirements: http://tinyurl.com/mtknmq6 Role of disease progression on uncertainty and depressive symptoms in patients with hep C: http://tinyurl.com/kkcqo77 Is genotype 3 hep C virus the new villain? http://tinyurl.com/mqzqo4s The above 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 these studies.
Client identity and introduction of hep C treatment into OSTs Australia – This research explored identity transformation among service users attending OST clinics following the introduction of hep C care and treatment. Introduction of hep C treatment involved clinical intervention that intimated a more comprehensive, holistic form of care. The shift of the clinical encounter to address health in addition to dependence appeared to present possibilities not only for the therapeutic alliance but also for service-user understandings of self and identity. Trial introduction of HCV care and treatment in selected OST clinics may have facilitated alternative, “non-addict” identities to emerge from a clinical setting where the stigmatising figure of “the drug user” has traditionally prevailed. ‘Not just Methadone Tracy’: transformations in service-user identity following the introduction of hepatitis C treatment into Australian opiate substitution settings. Jake Rance, et al. Addiction. Published online: 25 Nov 2013. http://tinyurl.com/ kgqjw7s • Abridged from BBV News, via j.johnson@ latrobe.edu.au
Virology update
Headlines from the latest Australian Hepatitis Research Review: Polymorphisms of HCV genotype 1b associate with hepatocellular carcinoma Summary: This study sought to determine whether hep C infection plays a direct role in the development of hepatocellular carcinoma (HCC). In a cohort of 49 genotype 1b patients who developed HCC over an average follow-up period of 6.5 years and 100 genotype-matched
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controls who did not over 15 years of follow-up, sequence analyses demonstrated significantly increased expression of certain polymorphisms in those who did and did not, respectively, develop HCC. Abridged from http://tinyurl.com/ md5zagw • Keep up-to-date on virology research. Subscribe to Research Review... http://www. researchreview.com.au/
research updates Men-only hep B mutation explains higher cancer rates
HCV oral combo nearly perfect
Korea – A team of researchers has identified a novel mutation in the hep B virus (HBV) in Korea that appears only in men and could help explain why HBV-infected men are roughly five times more likely than HBV-infected women to develop liver cancer. Although some women do progress to cirrhosis and liver cancer, the mutation is absent in HBV in women. The research is published ahead of print in the Journal of Clinical Microbiology. “This is the first mutation found that can explain the gender disparity in incidence of hepatocellular carcinoma,” says Bum-Joon Kim of Seoul National University, Korea, an author on the study. In the study, researchers randomly collected and analysed serum samples from 292 patients with chronic HBV infection who visited one of three hospitals in Korea from 2003-2005. Previous studies had suggested that a gene mutation known as W4P/R was associated with higher incidence of liver cancer and cirrhosis. They developed an assay to specifically identify HBV with the W4P/R mutation. When compared to patient outcomes, the W4P/R mutation was significantly associated with severe liver disease and was found exclusively in male patients. The investigators believe the assay they developed to discover the mutation may hold promise as a diagnostic for predicting male progression to cirrhosis and liver cancer. They caution that first larger studies are necessary to confirm their findings, as only 67 of the 292 samples came from women.
USA – First results from the phase III SAPPHIRE-1 study show that 96% of treated patients had undetectable virus 12 weeks after the end of therapy – an endpoint that is regarded as a cure. While drugmaker, AbbVie, released some details, results of the 631-patient study have not yet been presented at scientific meetings or in peerreviewed journals. The SAPPHIRE-1 study is one of six phase III trials evaluating three so-called direct-acting agents being developed by AbbVie: ABT-333, ABT-450/r, ritonavir (Norvir), and ABT-267. The latter two drugs were given in a fixed-dose combination. All patients in the treatment arm were also given ribavirin, an oral medication that, with pegylated interferon, forms the backbone of standard therapy. But interferon, which is given by injection and has severe side effects, was not used, the company said. Study participants had genotype 1 HCV, and no evidence of liver cirrhosis; 473 patients were randomly assigned to the treatment arm for 12 weeks and the remaining 158 got placebos. (After the initial 12-week period, placebo patients were switched to open-label treatment with the four drugs for another 12 weeks. The company did not report outcomes for that treatment period). The company said the most commonly reported adverse events were fatigue, headache, and nausea; the proportion of patients stopping the trial because of adverse events was 0.6% in each arm.
In the US, despite the availability of a vaccine, an estimated 3,000 die annually from hepatocellular cancer or chronic liver disease caused by hepatitis B.
Among patients in the active arm, the combined rate of virologic relapse (after treatment and before 12 weeks) or breakthrough (during therapy) was 1.7%.
• Abridged from virtualmedicalcentre.com (15 Nov 2013) http://tinyurl.com/ktqaxm9
• Abridged from medpagetoday.com (18 Nov 2013) http://tinyurl.com/kwp5mdv Our medical advisors report that the SVR 12 weeks after completing therapy (equivalent to cure) was 96% in genotype 1 patients treated with just a combination of tablets for 12 weeks – which are extraordinary results.
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research updates Knowledge of status influences sharing in injecting drug use
Assessing the global and regional burden of liver disease
USA – Injection drug users who knew they had hep C were more likely to share their injection equipment with those who also had hep C, researchers from the CDC have found.
Australia – Researchers from Australia presented research on the underlying causes of liver cancer and cirrhosis deaths at the Annual Meeting of the American Association for the Study of Liver Diseases, concluding that these diseases result in 1.75 million deaths each year. Viral hepatitis caused two thirds of those deaths. “The Global Burden of Death Study (GBD) 2010 estimates around 1.3 million people lost their lives to [hepatitis B and C], which is comparable to the respective burdens of HIV/AIDS, tuberculosis, and malaria,”said Dr Benjamin Cowie.
“Serosorting is said to occur when viral status serves as a determining factor in a person’s choice of sex or drug-injecting partners and [subsequent] behaviours,” the researchers reported in the Journal of Infectious Diseases. The researchers used data from the National HIV Behavioral Surveillance System-Injection Drug Users study conducted between September and December 2009. For this study, 9,690 were included because they had self-reported their HCV status and the HCV status of their last injection equipment-sharing partner in the past 12 months. Among the participants who knew their HCV status, 57% reported HCV positivity. Among the participants who reported sharing their injecting equipment, 38% knew the HCV status of their last sharing partner. Compared with those with unknown HCV status, HCV-positive participants were five times more likely to share with an HCVpositive partner. But people with known HCV status were less likely to share with a partner of unknown HCV status, compared with those of an unknown status. Those who knew their HCV status were more likely to know their sharing partner’s HCV status than those with an unknown HCV status. HCVpositive participants were more than four times likely to know their partner’s status and HCVnegative participants were two times likely to know the status. “Future research should include analyses of serosorting behavior based on actual versus perceived HCV status,” the researchers wrote. “Finally, given the unexplained differences in knowledge of serostatus by gender, race, educational attainment and homelessness, additional research should be conducted to examine these issues fully.” • Abridged from healio.com (4 Nov 2013) http:// tinyurl.com/m8apazn
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This is the first study to categorise deaths attributable to viral hepatitis, alcohol, and other causes of cirrhosis and liver cancer separately. “This allows examination of the specific mortality associated with each condition, which clearly has great importance when considering interventions to address the population impact of liver disease in particular countries or regions, as well as globally,” said Dr Cowie. According to the study, chronic liver disease is a leading cause of human mortality. Hepatitis B and C are responsible for 71% of liver cancer deaths and 58 percent of cirrhosis deaths, whereas alcohol is responsible for 25% of all deaths caused by liver cancer and cirrhosis. The toll taken by hepatitis B and C differs by region with hep C causing a greater number of deaths in the US and Western Europe, and hep B causing more deaths in China and India. “I think that there is clear evidence that in many countries, and at the global level, political and public health responses to chronic liver disease have not been commensurate with the burden of disease. This is especially the case for chronic viral hepatitis, said Dr Cowie. “In Australia, for example, liver cancer is now the fastest increasing cause of cancer death and less than 5% of people living with chronic viral hepatitis are currently receiving treatment.” The 2010 GBD study is a collaborative world-wide effort. It can be found on the IHME website at http://www.healthmetricsandevaluation.org/gbd • Abridged from hepatitiscnewdrugs.blogspot. com.au (3 Nov 2013) http://tinyurl.com/lffdo9j
research updates HCV reinfection, spontaneous clearance high among people who inject Australia – Researchers from Australia report a high rate of hep C reinfection and spontaneous clearance of reinfection among people who inject drugs, suggesting that the patients may have acquired a partial immunity to the virus. The study included 188 patients with HCV who had injected drugs in the past 6-months. There were nine confirmed HCV reinfections in seven patients and 17 possible reinfections in 16 patients. Blood samples were screened for the virus and positive samples were retested. HCV RNA samples were genotyped; a confirmed reinfection was defined as genetically distinct from the previous infection, and a possible reinfection was an instance in which a genetic distinction could not be made. During the 5-year study period, the incidence of confirmed HCV reinfection was 29 per 100 person-years. The combined incidence of confirmed and possible reinfection was 24 per 100 person-years. The risk for HCV reinjection in this cohort was approximately twice that of primary infection.
UK urges gyms to provide needles for steroid users UK – Gyms should provide needles for people who inject steroids and tanning drugs to reduce the risk of them contracting blood-borne viruses such as hepatitis and HIV, British health authorities have reported. They also urged needle and syringe programmes normally targeted at heroin users to look at how to reach out to people who inject dermal fillers such as collagen or Botox. About 70,000 people injected anabolic steroids in England and Wales in the past year, according to the National Institute for Clinical Excellence (NICE), a government body which provides guidance on health services. A study of 395 injectors published last week found that one in 18 had been exposed to hepatitis C, one in 11 had been exposed to hepatitis B and one in 65 has HIV. NICE has now put new guidance out for consultation urging the establishment of needle and syringe programmes in gyms.
Predictors of confirmed and possible HCV reinfection included shorter duration of injection drug use and having multiple recent partners who used injection drugs. “Both the elevated rate of spontaneous clearance in reinfection and the persistence of a considerable proportion of reinfections have implications for our understanding of acquired natural immunity to HCV,” the researchers wrote. “The persistence of a large proportion of reinfections also highlights the need for public health campaigns to educate [people who inject drugs] about the ongoing risk of infection after spontaneous HCV clearance, and potentially after successful antiviral treatment.”
“Anyone who injects drugs is at risk of HIV and other blood-borne viruses, regardless of their substance of choice,” said Dr Vivian Hope, an expert at Public Health England. “Our recent research suggests that levels of HIV and hepatitis infection among men using image and performance enhancing drugs have increased since the 1990s.” She urged “easy access for those who inject image and performance enhancing drugs to voluntary confidential testing services for HIV and hepatitis, as well as to appropriate sterile injecting equipment through needle and syringe programmes”. • Abridged from Google News (24 Sept 2013) http://tinyurl.com/l82t5mt
• Abridged from healio.com (21 Nov 2013) http://tinyurl.com/mg5ywqe
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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?
Hep Review magazine
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 – 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.
www.wdp.org.au 66
www.hep.org.au
• Hepatitis C: A review of Australia’s Response report published • Combination therapy trials: two therapies may be better than one • Kids and interferon therapy • Interferon side effects: some finer details • Impact of alcohol on progression of hep C • Costs of hep C infection (Economic Analyses Relating to Hepatitis C) • Hep C and the Premier’s Drug Summit • What is a cure? • Love from Naomi (Judd) • Thanks Microsoft (for Windows NT Server) • Dr Akagi – a Japanese arthouse film about a doctor obsessed with finding a cure for hepatitis • Vale Stephen Blake, NZ Hepatitis C Support Group. 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 25, June, 1999.
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acknowledgements
CHAMPIONS UNITE
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Andrew Smith Jeffrey Wegener
Want to find out the latest about hep C treatment, advocacy, harm minimisation, education, patient services and resources? Subscribe to The Champion e-Newsletter from Hepatitis NSW. 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. 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.
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, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak Proofreading/subediting: Gerard Newham Adrian Rigg Cindy Tucker First dog on the moon comic: Andrew Marlton 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
Hepatitis Infoline: 1800 803 990
ED82 reader survey winner Congratulations to Shula – from Emu Plains – who was the lucky winner of a $50 gift card. Shula was randomly chosen from the 26 readers who responded to our ED81 survey.
Weblink of the month
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.
There’s no better wake-up call to draw our attention to what we eat than news of a serious illness. And chronic illness doesn’t ask for a temporary solution like a fad diet that you can forget about when the season changes. Check out liver-friendly recipes at www.liverlife.com.au
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.
Cover photo by VOCAL-NY via flickr.com
Hep Review magazine
Edition 83
March 2014
67
DON’T SHARE
A BLOODY THING SHARING RAZORS & TOOTHBRUSHES CAN SPREAD HEP C
FOR MORE INFORMATION: HEPATITIS HELPLINE 1800 803 990
WWW.LOVEYOURLIVER.NET.AU
HEP C IS IN
PRISONS BE CAREFULL INSIDE PROTECT YOURSELF & FAMILIES
TREATMENT FOR HEP C IS AVAILABLE 68
www.hep.org.au