Hep Review Edition 75
Summer
December 2011
HEPConcert 100% cure rate without interferon No news on new drugs Aussie approval Our 20 asks Exercise not weight loss may be the key GP treatment of hep C Shark-derived drug may treat viruses
py o c e e Fre e tak as e l P
Hepatitis NSW 20 summers on... 20 years of service to the community Hep Review
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December 2011
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HEPConcert
One Sunday night in early October, HEPConcert rocked the Gaelic Hotel to its foundations in an effort to raise awareness of hep C. Writer, Charlie Stansfield, gives us all a backstage pass to the event.
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hen Adelaide born Steve Tulett went home last year for Christmas his main priorities were to spend a few days catching up with family. He’d also planned a typically lowkey South Australian get together with some old school-friends. Being a Facebook fan, a small mention appeared on his profile about a quiet night in front of a pub band. Unlike the virtual pals you usually never get to meet, two hundred old friends turned up to hang out with Steve that night. Someone invited Linda McInnes along. She shared her dream of a music benefit to raise awareness of hep C. Compared to the real estate agents or bank managers* you might have got trapped at a school reunion with, Linda struck gold. Steve is the sort of right hand man you want if you’re about to start anything from a fundraiser to an all out revolution. Put simply, he’s a doer. Linda’s story of living with the stigma of hep C struck a chord. As Steve says, “She got a hard time from it – this didn’t seem right”. A music event seemed a perfect way to raise awareness. * No offence to any Hep Review readers who are bank managers or real estate agents.
If there are six degrees of separation in the universe, there are only three in the music world. Back in Sydney, Steve made telephone calls. Favours called in, networks activated. The whole thing went viral, if you’ll pardon the pun. Steve pulled together a small committee of musicians with big hearts. As Willie McCracken said, “It’s the right thing to do – I was asked to help out so I did.” Willie, from Sydney Music Australia is also passionate about creating spaces for live music. He offered to foot the bill for the venue. Other friends, and friends of friends offered to feed the bands and do publicity for free. Hepatitis NSW was invited to help out. The first Sydney HEPConcert was born. So it was with thanks to Steve, Linda, Willie, Hepatitis NSW and the others that I found myself at the Gaelic Hotel in Surry Hills getting into the groove with a diverse crowd from adolescent punters to elders of the Sydney music scene. Kicking the night off was Bowral band, Exit Surrender, who brought a real freshness to pub rock. So fresh in fact that I understand from All images on these pages by Hayley Photography ©
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talking to Michael (vocals and lead guitar) that the last venue they played was “At school”. They delivered a tight set to an enthusiastic crowd. As comedian Anthony Ackroyd said of the band – headed by his 16-year-old son – “with DNA like that how could they go wrong?”
I noted hands patting knees, toes tapping the floorboards, and the odd (careful) head bang among the baby boomer section of the audience. Upstairs on the balcony, I am reliably informed there was a bit of air guitar going on. SFJ were actually really, really good.
Hats off to Ackroyd who was volunteered to MC the event by his old friend, musician, Michael Roberts. Most people know Anthony for his Kevin Rudd impersonations. As MC he ad-libbed with his own brand of humour, pulling out jokes and creative dance, managing a raffle – less with Kevin and more with the real Anthony.
Rockin’ Ray Burgess joined in for the last number; a searing cover of “Gloria”, which made him famous in the 70s. Ray, oh Ray where have you been? Actually, I know where he’s been coz he told me, “I got too old for jumping around on a stage and about ten years ago started to do community work instead.”
In a few numbers with Roberts, the real Anthony also demonstrated that he can hold a tune. Their music is a bit like the sound Elton might make if his grandiosity was tempered with a few notes from Tim Finn and cool factor lifted with a riff from Talking Heads. Speaking of cool factor, Blind Old Willie, a band who came together purely for HEPConcert, did a rocking account of the Eagle Eye Cherry hit “Save tonight”.
Providing the Casey Chambers/Beth Orton vibe was the utterly lovely Katie Brianna. Like SFJ she has the glow of a muso, a no-frills performer, kinda girl-next-door in her summer dress, sensible shoes and an acoustic guitar that she talks to during the set. Her songs came from the heart and resonated particularly well with the crowd. Michael Roberts ably provided support to her set on piano and accordion.
Super Florence Jam’s drummer, Mike Solo told me that their main influences were Led Zep and Pink Floyd. What I liked about SFJ was that they, like Zep and Floyd, have their own unique vibe. The stage filled with serious-focussed Gen Y faces in jeans and t-shirts, there was nothing too tryhard about them.
Roberts also manages Julia Clarke, whose gift was a Nina Simone number that few could pull off as well. With an earthy soul-jazz style, she looked and sounded like she comes from a diva line headed by Simone or Aretha Franklin. While one of the great things about such a diverse event is the sampling of different music, it was unfortunate that Julia, like the very
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impressive Jorge Pereria, had a vibe that seemed a little out of place at the Gaelic Hotel. Lovely though it was to have them, some of their impact was lost in the space between the audience and the stage. Memo to self: follow either of these acts up next time they’re playing an intimate smoky club where little tables jostle for space and the vibe is less indie rock, and more New Orleans blues. Back to the night. You know, my mum used to say that God gave us all a special talent. Some get the gift of beauty. Others get brains. For some blessed souls, God gives with both hands. Brains and beauty. Did someone mention Becky Cole? What can you say about the Beckstar. All blonde hair, lithe limbs and a megawatt smile. Leaping onto the stage in jeans and girly heels, she gave the drums a beating, acoustic and bass a workout, and switched from one to the other all within the one song without hitting a dud note. Woo-hoo! But it’s more than her energy. Becky’s generosity is the stuff of, well, a country and western song – like those I saw her play at the Love Your Liver campaign launch in August. Sunday night, fresh off a plane from Alice Springs, she
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came straight to the Gaelic from the airport for HEPConcert. Originally planning to do an acoustic set, her band found out she was doing the gig and insisted on coming along. As a freelance health writer, I believe it my duty to recommend you listen to more Becky Cole. She is the type of performer that, however rotten your day or life might seem, watching her live will have you punching the air, grinning, not taking anything too seriously. This is clever because her lyrics are actually serious, way more than just cheesecake to accompany a riff or two. Ask her about the waitress with the stellar voice she took to Hawaii for a holiday. Becky jumps around on stage smiling so much; you can’t help smiling back. Check her out on YouTube. Cheaper than anti-depressants with fewer side effects. I have to thank Supersede and the funk master, Pat Powell, for getting me off my butt for a kind of shuffle dance next to my bar stool, if not quite onto the dance floor. But I don’t blame that on the sunshine, moonlight, good times, or the boogie. I blame it on the time of night. Nevertheless, the groove factor was climbing as was the temperature, and the crowd, at least half a dozen of who seemed to belong to Denise Hanlon, got down. My enduring image for the night is of Ms Hanlon, who burst into the evening clad in blue polyester.
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That alone is worthy of applause. Looking like she’d just time warped in from the Kings Road, Chelsea, Hanlon, from Five Dock via Newcastle, sashayed onto the stage heralded by Orbison’s “Pretty Woman”. With a fine voice reminiscent of the 60s pop icons she channels in her set; I’m thinking Lulu, Dusty and Petula, Hanlon was the first act that took the crowd from toe tapping in the corners out onto the dance floor. As well as a voice, she is blessed with that classic Novocastrian ability to take the piss out of the audience and herself simultaneously. To an enthusiastic dancer in animal print, “You’re going off like a frog in a sock down there aren’t you luv?” To the crowd, “Come on touch me if you want…okay, I’ll let you have a think about it...come back to me later.” I’d pay good money just to join in with her singing “Newtown” instead of “Downtown” once more. Next time I might just reach out and touch the toes of those shiny white boots. If you get a chance to see her show – go! With all the excitement of the various acts, it was easy to forget that the event had a serious side. Can music raise awareness of hep C? Most of the
performers think so, even if awareness or getting tested can be a hard thing to sell. As Pat Powell said, “Music is a great medium. …especially if people don’t want to hear the message. Music is the sugar that helps it go down.” The audience was a mix of people affected by the virus, directly and indirectly, and some newly diagnosed. One woman in her 50s, I spoke with, had unknowingly lived with the virus for over 30 years, testing positive only a few months ago. “Nobody ever told me about hep C,” she said. In terms of the need for more music and more awareness, I think that pretty much says it all. Post script: Steve Tulett hasn’t got back to Adelaide yet, but he’s already thinking about HEPConcert two, a bigger event for 2012. Stay tuned. • Charlie Stansfield is a freelance health writer who regularly contributes to Hep Review magazine: violettara@yahoo.com
All images on these pages by Hayley Photography ©
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editor’s intro
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elcome to our Summer edition 2011 – the first edition that falls within our 20th anniversary celebratory year. I’ve been putting the magazine together since 1994 and I’ve endeavoured to cover as many developments as possible within the pages of Hep Review; and there have been so many exciting developments over the years. But it is the future that excites me.
a keyhole to our work What’s new at Hepatitis NSW? Our feature articles on page 21 highlight our 20 year milestone and set the scene for our advocacy work over the next four years. We launched our new strategic plan in July after several months’ consultation and review starting in January when we sent out over 5,000 questionnaires and interviewed over 40 key stakeholders.
We are now seeing the arrival of better treatments and are slowly edging towards the Holy Grail: a simple, short treatment without serious side effects that knocks hep C out for the count. Also, each year sees scientists closer to developing cheap vaccines that will prevent people from contracting the condition.
The resulting document will guide us for the next 4 years and has also provided us with the mandate to develop new services and projects.
Alongside these clinical developments, NSW enjoys a health workforce that is increasingly able to address hep C. Hepatitis NSW itself, reflects and highlights this.
We shall increase our advocacy efforts and we are looking to invest in our policy and campaigning and hope soon to start building a state-wide network of advocacy champions and active consumers ready to implement our new advocacy manifesto Our 20 Asks.
A decade ago our team was relatively small and our project work mainly targeted the wider community of people affected by hep C. We now have teams who are able to focus their project work on key priority populations. We are able to draw on the work of national research centres who have growing experience, understanding and community involvement in the fields of social research, clinical research, epidemiology and virology.
An external organisational review facilitated a submission for enhanced funding to NSW Health and guides a reconfigure of our services.
The new strategic plan also saw the development of a new business plan and the development of a new set of outcome measures that form the basis of our reporting internally and externally and evidence very clearly success around reach, quality and impact. We submitted our triennial funding application in June along with our usual end of year reports to our primary funders, the NSW Ministry of Health.
The NSW Ministry of Health remains a long-time supporter and partner in our work, and there is good collaboration between Australian hepatitis organisations. Hey, the future looks good!
Weblink of the month
The New Yorker Out Loud online edition looks at a decade of drug decriminalisation policies in Portugal. Michael Specter and commentator Blake Eskin discuss how Portugal framed its response to drug use as public health issue rather than a crime, and the lessons for other countries... http://tinyurl.com/6a5yhm2
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
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Cover image by paul_benjamin via flickr.com
promotions Over the next 12 months:
Our Client Services team will transform our Hepatitis Helpline into a new information service utilising telephone, text and online information and support. These new technologies will help us reach a greater audience and provide greater choice for people with viral hepatitis. We have planned new chronic disease selfmanagement services and will develop a CDSM program alongside broader emotional wellbeing services to be launched in 2012 We ensure that prevention strategies are at the heart of our work and have used 2011 to focus key prevention activities with key populations. We will continue to partner with the Aboriginal Health & Medical Research Council in a state-wide social marketing campaign; with NSW Health in the planning and delivery of a state-wide campaign targeting young people at risk of injecting and through our own education & prevention projects working with young people around tattooing and body art in our thINK about it and Streetshot projects and through workforce development
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.
Please phone 02 6198 9800.
As well as our quarterly magazines – Hep Review and Transmission Magazine – we will distribute new resources including a Youth Workers Toolkit, I am pregnant do I need a hepatitis C test? and a Quick Reference Resources for Healthcare Workers and a new Community Based Organisation Model of Care for People Entering Treatment. Drawing them In is an innovative cross-team project that delivers education sessions to priority populations and then run focus groups to develop plots and storyboards for Transmission Magazine... Continued on page 57.
Seeking your story Personal stories provide balance to our other articles. Please consider telling us your story. Published articles attract a $50 payment. Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.
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 Hep Review
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contents Letters Hospital blues
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News Our strategy for the future 10 WA $7.5 million hep C research deal 10 Hep C in Aussie prisons statement 11 Poor health among Aussie prisoners 11 2011 annual hep C surveillance report 12 2011 annual hep C behaviour report 12 No news on Aussie approvals 13 National Centre in IDU Research 13 Late evening snacks and cirrhosis 14 Telaprevir now in Canada 14 Boceprevir now in Scotland 14 Step up to the plate against hep C 14 Boceprevir now in Canada 15 US approves combo treatment for kids and teens 15 Greg Allman cancels tour due to illness 16 Hep C cases rising among US youth 16 Interferon-free trial of new drugs for all genotypes 17 Japan to raise taxes to pay damages to hepatitis patients 17 Chinese officials punished after eight contract hep C 18 Hep exposure via insulin pen 18 Further $101 million in Vegas hep C case 19 Wrestler files $5.8 million law suit 19 Features HEPConcert Our 20 Asks Our 20th anniversary year Exercise, not weight loss, may be the key GP treatment of hep C Supreme Court ruling opens door to drug injecting clinics across Canada Preventing hep C transmission in Australian prisons: what are the barriers? Want to tattoo? Learn how to do it safely Postcard from Brussels The mysteries of belly fat An update on looking back at blood Interferon irritability Obituary – Owen Westcott Obituary – Peter Mathews
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Opinion Brisbane injecting room a must
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My story Walter’s story: plan A or plan B The Van Zandts story: raising a child with hep B
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The most precious gift 7 ASHM workforce development program 7 CHI study 9 ATAHC II acute hep C study 10 St Vincent’s viral hepatitis clinic 12 RAMPT-C acute hep C study among MSM 13 Our Twitter and RSS feeds 15 HALC legal centre 16 St George Hospital liver clinic 17 Paediatric viral hepatitis clinic 18 KRC Healthy Liver Clinic 19 Global Battle Of the Bands 20 Multicultural hep C info and support 41 Hep Review reader feedback page 47 Factsheet promo – Workplace issues 49 Hep C bookmarks 54 Hepatitis NSW website 55 Transmission Magazine 55 HepConnect peer support service 55 Do you want to get healthy? 56 Bathurst’s new hepatitis clinic 56 Research updates Shark-derived drug may treat viruses 58 Pitavastatin may enhance hep C antivirals 58 Four-drug combo shows early promise 59 100% cure rate without interferon 59 NSP and OST and hep C transmission 60 Education and outcomes in vulnerable populations 60 Managed care at a hep C specialist centre 61 Specialist assessment and treatment for hep C 61 Regular features Keyhole to our work – Planning and review 6 Weblink of the month – New Yorker Out Loud 6 Featured resource – Treatment, Life, Hep C & Me 11 Q&A – When are the new treatment drugs going to be available in Australia? 20 Harm reduction poster – Drugs that damage veins 34 All you need to do is ask – St Helliers clinic 38 Hello Hepatitis Helpline – To tell employers? 40 The little book of hep C facts 43 Membership matters 57 A historical perspective (from April 1997) 57 Interferon-based treatment 62 Complementary medicine 63 Support and information services 64 Upcoming events 66 Do you want to help us? 66 Complaints 66 Membership form / renewal / tax invoice 67
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CHI study
letters
Hospital blues
The CHI (Charting Health Impacts) study is about how hep C affects people’s lives. The study follows a group of anonymous people over time, looking at all the health and social aspects of life – so that community organisations, doctors and governments learn what it is like to live with hep C.
I had to tell you this story. I’m sure you’ve heard a million of them, but I am so over it.
Joining the study involves taking an anonymous survey online. We then contact you in 3-6 months so you can tell us how things have changed for you.
Then she said that she had better let all the nurses know and I said “well, you should be taking precautions for all blood.”
If you have ever been told that you have hep C and you want to find out more about CHI, you can check out our website at www.chistudy.org.au Let your experiences count and let us know about how hep C has affected you.
Charting Health Impacts
I went in to hospital to get a tooth removed and an impact (screw in the jaw) under general anaesthetic. The nurse was a shocker. She asked me the usual questions and I said I had hep C. Then she asked me how I got it. I said “do you need to know,” and she said “you don’t have to tell if you don’t want to,” to which I replied “no I don’t.”
She said nurses were too busy to put gloves on all the time. I said that some people don’t know they have it and so it should be practised. Then she said she’d put a big note on my file. And then (and this is priceless) she said that she hoped no one got a needle stick injury in the operation and left that comment hanging as though this was all my responsibility. Having hep C, you are so vulnerable when you’re going in for a procedure and you don’t want to alienate the very people who look after you. Thank goodness the surgeon and anaesthetist were great but I’ve got to say it makes me feel like not disclosing because I constantly have to go through stuff like this. • Anonymous, VIC (name supplied)
www.chistudy.org.au
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news Image courtesy of Google Images
WA $7.5 million hep C research deal
Our strategy for the future New South Wales – Hepatitis NSW has developed its next four year strategic plan to guide our work up to June 2015. Working towards the vision of a world free of viral hepatitis, our mission is to work to prevent the transmission of viral hepatitis and improve the health and wellbeing of affected people and communities.
Western Australia – Cocrystal Discovery, the Bothell, WA-based drug discovery startup company has nailed down $7.5 million in new investment to develop a new kind of hep C drug with Israel-based Teva Pharmaceutical. Teva is a big maker of generic drugs and increasingly seeking to invent new ones. They agreed to invest the money into Cocrystal’s earlystage work on a drug candidate made to block a polymerase enzyme that’s integral to the hep C virus. • Abridged from xconomy.com (15 Sept 2011) http://tinyurl.com/6asrrsp
Our strategic plan signposts us as an organisation with five key values: inclusiveness, excellence, collaboration, integrity and independence. The plan also describes the context in which we work, our five work areas, our areas of growth and how we evaluate and improve our work. To view the document, go to http://tinyurl. com/7kwc86b or phone the Hepatitis Helpline. • Hepatitis NSW
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
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news Poor health among Aussie prisoners
Hep C in Aussie prisons statement Australia – Hepatitis Australia has developed the Consensus Statement: Addressing Hepatitis C in Australian Custodial Settings which has been endorsed by over twenty leading organisations in this field. The Third National Hepatitis C Strategy in 2010, which was endorsed by all Australian Health Ministers, listed people in custodial settings as a priority population. This strategy recommends the monitoring of the implementation of the Hepatitis C Prevention, Treatment and Care: Guidelines for Australian Custodial Settings as a priority action. Despite agreement, little progress has been made on the ground. There is therefore urgent need for a greatly improved response. We encourage you to read the Consensus Statement to increase your awareness of the need for all Australians, including those in a custodial setting, to have access to the same level of prevention and care. • Abridged from hepatitisaustralia.com (June 2011) http://tinyurl.com/3joum3e (also links to the actual document).
Australia – Prisoners have high levels of mental health issues and risky health behaviours, according to a report released by the Australian Institute of Health and Welfare. The Health of Australia’s Prisoners 2010 is the second AIHW report to examine prisoner health in Australia. The report shows that in 2010, over 30% of prison entrants said they had been told at some point in their lives before coming to prison that they had a mental illness. Prison entrants in Australia also reported a history of engaging in various risky health behaviours at greater rates than the general community, such as smoking tobacco, using illicit drugs and drinking alcohol at high levels. Two-thirds of prison entrants said they’d used illicit drugs in the previous 12 months, and over half had injected drugs at some time in their life. The physical health of prisoners was also highlighted as a major concern – over a quarter of prison entrants had a chronic health condition such as diabetes, and a further 35% had tested positive to hep C. More information on prisoner health can be found at: www.aihw.gov.au/prisoner-health/ • Abridged from aihw.gov.au (28 Sept 2011) http://tinyurl.com/6zrmysh
Featured resource: Hepatitis Australia’s Treatment, Life, Hep C & Me “People with hep C wondering about treatment are sure to find this book both a resource and a comfort.” – Paulie Stewart, Painters & Dockers and The Transplants. In NSW, for single free copies of the booklet, please phone the Hepatitis Helpline: 1800 803 990 For bulk free supplies in NSW, please use our faxback resources order form ... http://tinyurl.com/2gx6hrc
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news 2011 annual hep C surveillance report Australia – The HIV/AIDS, viral hepatitis and sexually transmissible infections in Australia: Annual Surveillance Report has been published each year since 1997. The recently released 2011 report provides a comprehensive analysis of HIV/ AIDS, viral hepatitis and sexually transmissible infections in Australia. The report, produced by The Kirby Institute, includes estimates of incidence and prevalence of viral hepatitides in populations at higher and lower risk for infection, patterns of treatment for hep C infection and behavioural risk factors for hep C infection. Named for former High Court judge Michael Kirby AC, the Kirby Institute now fulfils a much broader role. The skills, techniques and expertise developed in the study of HIV have been applied to a range of other infectious diseases, notably viral hepatitis and sexually transmissible infections. Caution has been expressed for the 2011 report which does not include the NSW data for hep C diagnoses. Thus, with approximately 40% of Australia’s 2010 hep C notifications unreported, national hep C prevalence is significantly understated.
2011 annual hep C behaviour report Australia – The HIV/AIDS, Hepatitis and Sexually Transmissible Infections in Australia: Annual report of trends in behaviour is a key annual report that reviews behavioural data. This report, produced by the National Centre in HIV Social Research, concentrates in particular on measures of trends over time, other repeated measures and key emerging issues. Findings from other studies that are of relevance to understanding behavioural trends and the evolving needs and responses of affected communities are included. As in previous years, much of the report is concerned with behavioural trends related to the transmission and prevention of HIV in gay and other men who have sex with men. In 2010, no new behavioural surveillance data were available regarding drug use in young people in NSW and WA nor regarding drug use and equipment sharing among people obtaining needles and syringes from pharmacies in NSW. As such data become available from repeated and new surveys, they will be included in future reports. • Abridged from the report’s introduction http:// tinyurl.com/645ofp8
• Abridged from The Kirby Institute http:// tinyurl.com/3bhpfks
St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, Sydney, offers treatment for hepatitis. Featuring a fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment. • For further information, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au
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Image courtesy of Google Images
St Vincent’s viral hepatitis clinic
No news on Aussie approvals Australia – The Pharmaceutical Benefits Advisory Committee (PBAC) meets on a regular basis to make recommendations on which new drugs are listed (subsidised) on Medicare. Victrelis (boceprevir) was up for consideration at the July 2011 PBAC meeting but the committee is unable to publicise its recommendation – for or against Medicare listing – until the Therapeutic Goods Administration approves boceprevir for use as a hep C treatment drug in Australia. It is believed that Victrelis is one of the first drugs to be put through “parallel processing”. This is where both TGA and PBAC approvals are lodged at the same time. Ideally, this cuts down the time taken for overall approval and recommendation; but in the case of Victrelis, timing hasn’t worked well and we must now wait for further news from the TGA. New triple combination therapy drugs have been approved in the US, Canada, Germany, France, UK, Spain, Norway, Sweden, Finland, Denmark and Brazil. At the time of going to print, the Australian Therapeutic Good Administration could give no comment or news on the approval of Victrelis.
news National Centre in IDU Research Australia – Improving the health of people who inject drugs is the vision of a new $2.5 million Centre for Research Excellence into Injecting Drug Use (CREIDU) launched in Melbourne at the Burnet Institute. The CREIDU will generate new evidence about ways to improve the health and social burden of injecting drug use in Australia and develop tools for translating research into policy and practice. CREIDU has enlisted academic partners from many Australian research centres and will help better unite these centres with community organisations. Burnet’s Associate Professor Margaret Hellard, who is a lead investigator with CREIDU, says the strengthened links forged between researchers will also benefit the communities they serve. “The Centre’s focus is to increase our knowledge about IDU and its health and social effects, so ultimately we can identify ways to prevent or reduce the severity of health and social outcomes through policy and practice,” Associate Professor Hellard said. • Abridged from burnet.edu.au (18 July 2011) http://tinyurl.com/3zluyew
• Hepatitis NSW
Have you recently contracted hepatitis C? Would you like to help with hep C research? Studies for patients with hepatitis C The Kirby Institute (formerly The National Centre in HIV Epidemiology and Clinical Research) is running an acute hep C study. The RAMPT-C study aims to explore reasons for transmission of hep C in men having sex with men. If you have been recently diagnosed with hep C (in the last 6 months) and believe that you might have contracted it within the last year or two, and you would like to know more about the study, please contact the study coordinator at St Vincent’s Hospital, Sydney: Rebecca Hickey on (02) 8382 3825 or rhickey@stvincents.com.au *The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee. HREC Ref: HREC/09/SVH/51
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Image courtesy of Google Images
Telaprevir now in Canada
Late evening snacks and cirrhosis USA – US researchers report that late evening snacking was the only intervention that was simple, inexpensive, and relatively free of side effects with the potential to reverse muscle wasting in cirrhosis. However, while the intervention held promise, there was still a lack of evidence that it improved clinical outcomes such as survival or need for liver transplant, they reported. The optimal composition of late night snacks was not clear, but “a branched chain supplemented” snack held promise, the authors wrote.* Speaking to Gastroenterology Update, Professor Chris Liddle from Westmead Hospital, said the review was a good reminder of the importance of nutrition in the treatment of patients with cirrhosis. “It is already standard practice to advise cirrhotic patients to have frequent meals spread throughout the day, especially those rich in protein, but the late evening can be a bit of a gap in nutritional intake,” he said. More dietitians were needed to provide expert care in clinics looking after cirrhotic patients, and the cost of nutritional supplements was also an impediment for many patients, he added. • Abridged from gastroenterologyupdate.com.au (3 Nov 2011) http://tinyurl.com/3qry6s4 *A type of body building protein supplement.
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Canada – Vertex has announced that Incivek (telaprevir) is now available in Canada for people with genotype 1 chronic hep C with compensated liver disease (some level of damage to the liver, but the liver still functions), including cirrhosis (scarring of the liver). Incivek was approved for use with pegylatedinterferon and ribavirin: for people who are new to treatment; and for relapsers, partial responders and null responders who were treated previously but who did not achieve a sustained viral response. • Abridged from financialpost.com (11 Oct 2011) http://tinyurl.com/3lsnezc
Boceprevir now in Scotland UK – The Scottish Medicines Consortium, which advises National Health Service Scotland on prescribing new treatments, has announced that Victrelis (boceprevir) is accepted for use within Scotland. • Abridged from pharmiweb.com (10 Oct 2011) http://tinyurl.com/6h5lzdv
Step up to the plate against hep C USA – The St Louis Cardinals are stepping up to the plate against hep C. Since August 2011, fans have been able to get free hep C screenings at Busch Stadium. It’s part of a nationwide effort by Major League Baseball to bring attention to the causes and treatment of hep C. • Abridged from ksdk.com (21 Aug 2011) http://tinyurl.com/3vjbuk5
Boceprevir now in Canada Canada – A new drug, recently approved by Health Canada, brings a cure closer for the 250,000 Canadian people living with chronic hep C. Boceprevir – brand name Victrelis – when added to current standard therapy has been shown to have higher cure rates in studies published early this year by the New England Journal of Medicine. “Given the prevalence of the disease, this is a significant development,” said Dr Alnoor Ramji, clinical assistant professor at the University of British Columbia. “The new medicine is part of a new generation of drugs that offer patients a greater hope for a cure,” he added. • Abridged from edmontonjournal.com (3 Aug 2011) http://tinyurl.com/3rdjv6k NB: Regards these articles on boceprevir and telaprevir, the following countries have approved one or both of the new triple combination therapy drugs: the USA, Canada, Germany, France, UK, Spain, Norway, Sweden, Finland, Denmark and Brazil.
news US approves combo treatment for kids and teens USA – The US Food and Drug Administration has approved the combination of peginterferon alfa2a and ribavirin for children and teenagers with chronic hep C aged 5 to 17 years. The indication is for patients with compensated liver disease and no prior history of interferon therapy. The approval of the combination – which is marketed as Pegasys and Copegus – came on the heels of study NV17424. The study involved 114 children who received 48 weeks of treatment with either peginterferon alfa-2a plus ribavirin or with peginterferon alfa-2a plus placebo. Paediatric patients on combination therapy experienced growth delay relative to baseline, which the researchers said was the most important adverse event. However, paediatric patients, similar to adults, also experienced influenza-like illness, headache, gastrointestinal disorders, injection site reactions, irritability, fatigue, rash, pruritis, insomnia and decreased appetite. Thirty-five percent of patients in each group also required dose modifications. • Abridged from pediatricsupersite.com (25 Aug 2011) http://tinyurl.com/3waf2g9
We publish many more hep-related news items on www.hep.org.au For daily updates, follow us on Twitter or an RSS feed. Twitter – it’s as easy as “one two three!”
1) Open a Twitter account. 2) In Twitter, click on “find people” and search for “hepCnsw”. 3) Click on the “follow” button. 4) You’ll get a sentence and a link to each news item as they are put up daily on our website. On our site, you’ll get the link to the original news source. RSS - find out more...
A bookmark on your browser toolbar will showcase links to our latest news items. http://www.hep.org.au/documents/UsingOurSocialMediaTools.pdf
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news Gregg Allman cancels tour due to illness USA – Doctors have ordered Gregg Allman, the Southern rock legend and frontman of the Allman Brothers Band, to cancel a series of upcoming tour dates because of a respiratory infection. This is the latest in a long line of health-related problems for the 63-year-old Allman, who has hep C and is still recovering from a liver transplant he received last year. He had already cancelled a series of shows in Europe back in June thanks to the same respiratory ailment. “His doctor hoped that with rest he’d get better, but unfortunately the issue has persisted,” said Allman’s publicist. • Abridged from music-mix.ew.com (10 Aug 2011) http://tinyurl.com/3jce7ze Also see ED70, page 7.
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. We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.
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Hep C cases rising among US youth USA – Hep C infections are rising quickly among white youth in Massachusetts, fuelled by increases in the use of heroin and other injection drugs. Cases of the infection have been dropping across the general population, but they started rising in youth aged 15 to 24 between 2002 and 2006, a trend that continued through 2009, reported a team from the Massachusetts Department of Public Health. “Of cases with available risk data, injecting drug use was the most common risk factor for transmission,” the team said. “The increase in case reports appears to represent an epidemic of hep C infection related to injecting drug use among new populations of adolescents and young adults in Massachusetts,” they wrote. “Law enforcement data suggest this trend might be occurring in other states,” the Centers for Disease Control said, citing data showing increases in first-time heroin use, which jumped from 100,000 in 2002 to 180,000 in 2009. Law enforcement reports from officials in the Great Lakes, Mid-Atlantic, New England, New York/New Jersey, Southeast, and West Central regions also suggest that heroin use is increasing, particularly among younger users. The latest cases were reported from across Massachusetts, mostly among non-Hispanic whites, and were split evenly between males and females.
Of 1196 cases in which doctors could provide a history of potential risk factors, 72% were in people who reported current or past injection drug use. Among the 719 people who said they injected drugs in the preceding 12 months, 85% said they had used heroin, 29% had used cocaine, 1% had used methamphetamine and 4% had used other drugs. They said the study suggested the need for better monitoring of hep C infection and better prevention efforts targeting adolescents and young adults. • Abridged from foxnews.com (6 May 2011) http://tinyurl.com/4xvu3mt
Interferon-free trial of new drugs for all genotypes USA – Pharmasset announced that screening has begun in a Phase 2b, international study of PSI7977 and PSI-938, two polymerase inhibitors for the treatment of chronic hep C. The QUANTUM trial will evaluate interferonfree regimens of PSI-7977 and PSI-938 with and without ribavirin over 12 or 24 weeks in people who have not been treated previously. The trial will also evaluate the use of PSI-938 monotherapy. “We are encouraged by the early efficacy and safety data being generated with PSI-7977 and PSI-938,” stated Dr Michelle Berrey, Pharmasset’s Chief Medical Officer. “The QUANTUM trial is the first interferonfree study with an SVR endpoint. The ability to include all HCV genotypes was supported by data from the NUCLEAR study and the interferon free arms of the ELECTRON trial.”
news Japan to raise taxes to pay damages to hepatitis patients Japan – The government is set to provisionally raise taxes and secure around A$8.6 billion in funds to pay damages to people who filed lawsuits over mass hep B infections, sources close to the matter have revealed. The tax hike would come over a fiveyear period starting in April 2012, and the government will finalise the plan within this month, said the sources. In June this year, the government admitted its responsibility for the hepatitis case, in which people became infected with the virus from repeated uses of needles in group vaccinations between 1948 and 1988. • Abridged from xydo.com (27 July 2011) http://tinyurl.com/3evr5rc Also see “Monster Japanese hep B compo plan”, ED72, page 13.
• Abridged from marketwatch.com (13 Sept 2011) http://tinyurl.com/3jst74t Also see “100% cure rate without interferon” on page 59.
Image via Google Images
St George Hospital liver clinic The Multi Disciplinary Liver Clinic at St George Hospital supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials. For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 lisa.dowdell@sesiahs. health.nsw.gov.au
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news Hep exposure via Chinese officials punished after eight insulin pen USA – Diabetic patients who may have been contract hep C exposed to blood-borne diseases at a MadisonChina – Six officials in Central China’s Henan province have been removed or suspended from their posts following the revelation of a medical incident in which eight people contracted hep C, local authorities said.
based clinic are now getting tested for hepatitis.
Eight patients with renal failure contracted hep C during dialysis treatments at the Xin’an County People’s Hospital, the county government said in a statement.
Safe use of diabetes management equipment is a major concern as more Americans are diagnosed with the disease and as ageing boomers move into assisted living facilities, said Joe Perz, an epidemiologist in the CDC’s Division of Healthcare Quality Promotion.
Improper conduct at the hospital’s dialysis centre caused the HCV infections, it said. A deputy director of the county’s health bureau as well as the president, a vice president, and a chief nurse of the hospital have been fired. Meanwhile, a deputy county governor and the director of the county health bureau have been suspended from their posts pending further investigation, according to the statement. • Abridged from chinadaily.com (23 Aug 2011) http://tinyurl.com/422vw4c
A nurse who worked at the clinic for the past five years misused equipment to teach patients to inject insulin and test their blood sugar levels, the Dean clinic said.
“One of the most common myths is that contamination is limited to the needle. An insulin cartridge is a form of syringe. And a syringe and needle should be seen as a single device. One can contaminate the other.” The former Dean Clinic employee accused of unsafe conduct is a registered nurse and certified diabetes educator, trained to show diabetic patients how to inject insulin with an insulin pen and how to test blood sugar levels with a fingerstick device. • Abridged from jsonline.com (31 Aug 2011) http://tinyurl.com/3w3z2ja
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.
Image via Google Images
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For information, contact Janine Sawyer at The Children’s Hospital Westmead (CHW) on 98453989 or janines1@chw.edu.au
news Further $101 million Wrestler files $5.8 in Vegas hep C case million law suit USA – A Nevada jury found drug companies liable for A$101 million in damages in a third product liability lawsuit stemming from a hep C outbreak four years ago at Las Vegas outpatient colonoscopy clinics owned by Dr Dipak Desai – now facing state and federal criminal charges. A Clark County District Court civil jury awarded A$13.6 million to Michael Washington and his wife, Josephine Washington, before deciding Teva should pay the couple A$58 million and Baxter Healthcare should pay A$29 million.
Canada – Devon “Hannibal” Nicholson, the Ottawa wrestler who has already filed a A$6.3 million lawsuit against “Abdullah the Butcher”, has now filed a statement of claim for almost A$5.84 million against World Wrestling Entertainment, claiming wrongful dismissal/ breach of contract. The suit is based on the fact that WWE offered Nicholson a standard contract in June, 2009, and later rescinded the contract in August, upon discovery that Nicholson had hep C.
Israel-based Teva promised to appeal. It called the Las Vegas legal system “broken” and said jurors have been prevented from hearing the company’s defence. Baxter didn’t immediately comment.
“In rescinding Devon’s employment contract, the WWE intentionally infringed Devon’s human rights by discriminating against him because he is hep C positive,” the claim reads.
Teva and Baxter already have an appeal pending, seeking to void a A$487 million jury award in 2010 to a Las Vegas private school headmaster.
Part of the suit also brings up WWE’s “No Blood Policy” whereby the company attempts to curtail blood in the ring. Nicholson alleges that different doctors told him different things regards being able to wrestle while hep C positive – given the “No Blood Policy.”
Teva is also appealing a separate A$178 million verdict awarded to five plaintiffs. Lawyers allege the drug companies chose profits over patient safety by delivering large vials of the powerful anaesthetic propofol. They argue the large supply encouraged clinic doctors and nurse anaesthetists to reuse the large vials during successive anaesthesia procedures – despite the danger of spreading blood-borne illnesses from one patient to the next. • Abridged from abcnews.go.com (13 Oct 2011) http://tinyurl.com/5uftn8y Also see ED73, page 10, and ED71, page 6.
There are five US states where hep C positive wrestlers are barred from performing. According to the filing, Ty Bailey from WWE’s Talent Relations Branch called Nicholson and expressly said that the rescinding of the contract was not related to Nicholson’s health situation, but “rather was due to licensing situations.” • Abridged from slam.canoe.ca (4 Oct 2011) http://tinyurl.com/4xkvqhl Also see ED73, page 25.
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
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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promotions
Q&A: When are the new hep C treatment drugs going to be available in Australia?
We asked several gastroenterologists and hepatologists and they suggested we could see approval for use of the triple treatment drugs – boceprevir or telaprevir together with current combination treatment – in Feb 2012 or Sept 2012. Listing of the drugs on the subsidised Medicare S100 scheme is expected to follow soon after with December 2012 suggested as the most likely date. For more info, phone your Hepatitis Helpline – 1300 437 222 (local call costs from landline phones)
Global Battle Of the Bands The Global Battle Of the Bands is a USD$100,000 competition aimed at emerging bands who have what it takes to represent Australasia. At this level, bands are experienced with playing in front of an audience, have a good fan base and compose original music. The power of the experience stems from the presence and support of peers and fans, music lovers, family and friends. GBOB reaches a massive youth-based demographic,
who are socially active and enthusiastic about the rock music scene – young people who are busy out there building a huge appetite for great live entertainment! Hepatitis NSW supports GBOB so we can spread the word about viral hep to young people. You can support GBOB by getting online and checking out the venues when you’re looking for a great night out... http://gbob.com/australasia
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Our 20 Asks Twenty things that we want to happen in NSW over the next four years.
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ovember 2011 marked the 20th anniversary of Hepatitis NSW. Although this is a time for celebration it is also a time for reflection and to note the changes and progress we have seen over the years for people living with or affected by hep C. As part of the development of our Strategic Plan, 2011-2015, and to prepare for our 20 year celebration we consulted our members, friends and affected communities. We asked what you thought we still need to do and what we should be campaigning for with the NSW Government. Our 20 Asks lists what you told us. The document highlights 20 issues that arose from that consultation. Our 20 Asks relate to change that we want to see happen across a range of different areas: viral hepatitis prevention, health management and treatment, new ways of working and changes in the law. We know we won’t achieve everything overnight and we know that some of these asks are big. But they make good sense and their achievement is what needs to happen to help us meet our mission statement: the prevention of transmission of viral hepatitis and improvement in the health and wellbeing of affected people and communities. We know that together, with our members’ help and with our partners’ support, we will be able to achieve them. We will be asking – at different stages from 2011 to 2015 – for help with our campaigning and for you to get involved. We encourage you to get in touch with us on campaigns@hep.org.au to tell us you’d like to help. • Hepatitis NSW
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Our 20th anniversary year Celebrating 20 years of service to the NSW community.
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n November 1991 a group of people met at Westmead Hospital to discuss the formation of a support group for those living with hep C. The group was called the “NSW Hepatitis C Support Group”. Who would have thought that 20 years later the group would still be going strong and would have grown into the organisation we know today as Hepatitis NSW? Birthdays are the perfect time to take stock and look back over the years – to mark how far we have come and to remember achievements and milestones. In 2011 there is much to celebrate: treatments are improving and more people are completing it successfully; prevention initiatives are enabling a new generation to better avoid hepatitis transmission; and there are a wider range of support services are available for people living with or affected by hep C. But there is still much to be done and every new transmission of hep C is one too many. On 1 December, we kicked off our anniversary celebrations at the Australian Museum where the Hon Jillian Skinner – NSW Minister for Health, and Minister for Medical Research – joined us to launch Our 20 Asks of the NSW Government. We plan to have a number of events over our anniversary year including launching some new services for people living with hepatitis C. We will highlight our ongoing determination to fight on your behalf for better treatment, care and support. In the meantime, thank you for your continued involvement and encouragement and here’s to the future and your ongoing support! • Hepatitis NSW
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Walter’s story: plan A or T
here are lots of ways to conclude a driving holiday across America. Flying home quietly with swags of duty free, a Monica Lewinsky t-shirt and a good novel is one way. Being ordered to strip down to your underwear (designer label, thank god) and walk six times through a security gate that emits a blood curdling shriek each time you pass through, is another.
It was the late 1990s, the era of the Unabomber. He’d announced that LA airport would be blown up the day of my departure, so security was amped up. It was a mystery to me why, practically naked, I continued setting off the metal detectors. I pleaded with the militia that they could do whatever tests they liked just so long as I could get dressed. Finally they let me onto my flight. Some months later, still thinking I had nothing more than a good travel story, I came across an article about haemochromatosis and how in extreme cases it can even be picked up by security checks at airports. A few tests later and I tested positive for the condition. For over a decade, my liver ached. I’d have sharp pains – what I called needles under the rib cage. I’d known I had hep C since 1992 but haemochromatosis was another whammy. In 1999 I was put on a blind trial – and drew the shortest of short straws – the maximum dose of raw interferon three times a week. The side-effects were hideous. I sweated and shook so much I had to move into the spare room, and I believe the experience contributed to the eventual breakdown of my marriage. On top of everything else, the trial was cancelled after seven weeks. And I lost a heap of good hair in the process. Although I’d come to terms with having hep C, a rusted liver and stage two fibrosis, I made the decision to have treatment because I realised I didn’t want any “what ifs?” at the end of my life. But I wasn’t super-positive. Deep down, I didn’t really trust treatment to work. I had a “Plan A” and “Plan B” – If I do it and clear, I’ll go on a world trip; if I do it and don’t clear, then I’ll go on a world trip!
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I also had the sense that I had gotten myself into this mess so I was going to have to try to get myself out. It wasn’t that I wanted to punish the younger me but I did in some ways see doing treatment as my payback for years of fun and frivolous entertainment.
I started combination treatment in 2007 with the attitude that it wasn’t going to get the better of me. I approached treatment the second time as a challenge and all the negative stories of dropout rates and side-effects were not going to stop me. Fortunately, I was treated at my local hospital, which has outstanding primary care and support staff. I may even have fallen in love with several of the nurses. I told hardly anyone I was on treatment. I discussed it confidentially with a colleague at my work and she covered for me on the days I sat in my office staring at a computer screen, or slept under my desk George Costanza style. I structured my life so that I would have my shot on Friday nights, and I’d cocoon myself for the weekend when the sides were the worst. I worked full-time during the whole 48 weeks and did not take a single day off. I had one friend who had done treatment, and she was my rock. I’d call her and talk about symptoms, side-effects and life. We laughed a lot and shared much humour, often at our own expense. Otherwise, I didn’t disclose to anyone else apart from my ex-wife and a few people in my hep C support group. (Oddly, my ex who couldn’t live with me unwell was there for every one of those 48 weeks!) Of course, other friends knew something was wrong when I started dramatically dropping weight – I wanted to change my name to “Gaunt”. A few friends came over in some form of “intervention” and one tentatively approached me, rather sheepishly, to ask if everything was alright. They had huddled together and decided I had cancer and was hiding it. Their kindness was genuine and
touching, but I kept up the lie and said there was something but that I didn’t want to talk about it. I didn’t want sympathy. I didn’t want people gingerly stepping around me and asking “how are you?” all the time. Also, if I had disclosed, I’d then have to tell people later whether it worked or not; and then the big stigma issue of how, why, where and when did you get hep C? It was easier to limit it to a few people. Funnily enough, this was a bit like my drug experimentation – something I went off and did secretly, something that only a very few people knew about. There’s a certain perverse enjoyment in secretiveness. Conversely, I’ve been quite open with the haemochromatosis. I would tell people about that without any hesitation, often when explaining why I didn’t drink alcohol. However, I’ve been burned a few times with disclosing hep C. It doesn’t seem to matter if your drug use and infection was half your lifetime ago and you no longer do the things you did then. Haemochromatosis doesn’t invite the same kind of judgment as hep C. There were a few things in particular that kept me going. One is my dog. Sick or not sick, every day, morning and night, I had to walk her. There would be days we’d be out and I’d be so slow and tired, I’d feel like some sad old man shuffling along with his dog. The benefits of having a pet while on treatment are enormous. If there was one single thing which sustained me, it was my companion kelpie. Another important element is books and music. I deliberately fostered my interests into obsessions – such as reading everything by a particular author, or buying the collected works of The Grateful Dead. Their music would transport me from whatever negative mind state I might have been in and their bass player, Phil Lesh, is also a big hep C advocate. I dropped in to his website fairly often during treatment. Lesh has
created a wonderful space where I found a community to share, read, laugh and participate www.philzone.com/hep_c-board.html Following structured daily routines also soothed me, and made me more able to tackle the few really bad days. Routines gave me focus, made me feel like I was in control. I became good at finding milestones. Forty-eight weeks sure can go slow on pegylated Interferon. I’d mark off time – 47 garbage collection days, 46 Herald TV guides, a football season, a birthday. Each day marked off my calendar was a victory. Blood tests and results are another important milestone. Each PCR or liver function test, each pick up from pharmacy; they all became motivators and helped count down the clock. In other areas, I loosened up. I smoked a bit of pot most nights and that helped me relax, kept my appetite up and helped me sleep. It also made a lot of bad TV seem entertaining. I’ve always had a very healthy diet, but on treatment I ate whatever I could, whenever I could. One night I had my first McDonalds in about 20 years. I thought a Big Mac was at least better than not eating anything; although in retrospect that may not be true. It was disgusting. The hardest weeks were 30-42. It seemed such a long stretch and I was really over it by then. I didn’t take any anti-depressants, but at times I wished for something that could quash my rollercoaster mood swings. I’d snap at just about anything. Things were broken and inanimate objects given names of body parts and functions. The dog would hide and the neighbours recoil as I literally attacked the washing line, wrestled with garden implements or cursed the god of liver disease. My lowest point on treatment lasted about three days, and happened just over half-way through. It was New Year’s Eve and I was too tired to go out to celebrate. I remember thinking bleakly, “What has become of me? I’m mid 40s, single, it’s f-ing NYE and I’m alone”. I couldn’t see any light at all. I managed to get it together to call some friends I knew would be having a quiet one for very different reasons, they told me to come over, and we watched dud DVDs for the night.
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Montage images via Google.
plan B
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feature Forty-eight weeks eventually passed and by the end I looked like a prisoner in a war movie. I wouldn’t say I had a post-treatment epiphany or anything like that. There was an element of depression afterwards. In almost every respect the last decade had been built on the premise that I was sick, that I had a disease and that this was my lot in life. Finishing treatment led me to confront a bunch of issues that I’d conveniently masked with hep C. We can allow our illness to define us just as others might define us by our illness. I now walk down the street looking and think I really don’t know what is going on in their lives. Behind the scenes they could be dealing with all sorts of terrible stuff. I’m far more tolerant and less quick to judge these days.
at people
nothing has given me a sense of accomplishment like completing 48 weeks of combination treatment. No one could do it for me. It was up to me to work out how to find a way through. Completing treatment and clearing hep C are two of my proudest achievements. • Walter, 45, lives in the ACT. He has worked in the music industry, and in media and communications in the health sector. He completed 48 weeks of combination therapy and achieved a SVR in November 2008. Abridged from Hepatitis Australia’s treatment stories book, Treatment, Life, Hep C and Me (see page 11).
Having said that, I did see someone recently wearing a t-shirt that said “The liver is evil – it must be punished”. I wanted to punch that guy and say, “Listen here you f-wit, how dare you make light of liver disease!”
I’ve done a lot of things that some might say are courageous or risky. I’ve hitched and driven across America, travelled through the Middle-East and had a pretty full and interesting life, but 24
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Image by p3anut via www.flickr.com
At the support group, the outrageously entertaining cast of characters included some not yet on treatment. My advice to them was this: don’t immerse yourself in the negative or dwell on the side-effects. Impotency, hair loss and impersonating Travis Bickell in Taxi Driver are all manageable, and mostly temporary. Get yourself a support system that includes those who have been through treatment, and others who can offer you support and companionship, not just sympathy and anxiety... and you need to have a laugh.
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Exercise, not weight loss, may be the go T
here’s no denying the benefits of weight loss for preventing and managing diabetes, but given the (pardon the pun) slim chances of longterm success for so many patients, shouldn’t we be broadening our focus? Dr Nathan Johnson, a researcher and chief investigator at the University of Sydney, studies the benefits of dietary supplementation and exercise therapy in obese and overweight adults with non-alcoholic fatty liver disease. He has recently been awarded a Diabetes Australia Research Trust grant to study the relationship between exercise and liver fat reduction in pre-diabetes. Dr Johnson’s special interest includes understanding the impact of exercise on patients where weight loss is not achieved. Considering how many patients struggle to lose weight (and keep it off), Dr Johnson believes it’s time to look for alternative strategies. “The systematic reviews [of research] show that, when people do exercise programs as part of a clinical trial, they tend not to lose weight or they regain it within the first year. When they do lose weight with exercise, it tends to be only 2-3kg,” he says. According to Dr Johnson, many people have a tendency to “compensate” when they commence an exercise program and this is a reason for unsuccessful weight loss. “What people tend to do is they’ll start exercising, and then they’ll reduce the amount of spontaneous activity they do during the day, or
Image via Google
People with liver disease should aim for good health and while weight loss is an obvious way to improve general health, regular exercise may be just as important, reports Lynnette Hoffman.
they’ll say they’re eating the same thing but they’re actually eating more.” Furthermore, Dr Johnson and his colleagues have recently completed an analysis of 35 studies, which include 2145 people, looking at the effects of aerobic and resistance training on visceral* fat loss. And the findings are encouraging especially for those patients who are increasing their physical activity, but still hanging on to the extra kilos. “There is obviously a huge benefit of doing aerobic exercise on visceral fat loss. But beyond that, there are actually a number of studies that also show visceral fat loss, even in the patients who didn’t lose weight,” he says. “The other fat we’re worried about is fat that accumulates in the liver, but we’ve shown that, even in the cohort of obese patients that didn’t lose weight, they actually decreased their liver fat as well but that’s early days.” What’s more, he notes, a reduction in liver fat seems to occur even for patients who exercise less than the current recommendation of 250 minutes or more of physical activity each week. This has potential for providing clinical benefits, given that a fatty liver is associated with abnormal liver function tests, and hepatocellular carcinoma (liver cancer) risk. • Abridged from Medical Observer (23 Sept 2011). The soft interior organs in the cavities of the body, including the brain, lungs, heart, stomach, intestines, etc., especially those confined to the abdomen. *
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GP treatment of he GPs with special training can prescribe treatment for hep C but things don’t always run smoothly. Peter Lavelle explores the current situation and future directions of this approach.
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f you needed to undergo treatment for hepatitis, would you prefer to be treated for hepatitis by your GP or a hospital specialist? There’s a fierce debate going on in the hep C treatment community as to who is best placed to provide treatment for hepatitis. On the one hand are the specialists – the hepatologists, gastroenterologists and infectious diseases specialists who treat patients in the outpatient clinics of hospitals. On the other hand are a small group of GPs who treat patients in their GP surgeries – working in association with the hospital specialists, seeing hepatitis patients in between visits to the specialists. But they can only see hep C patients in between specialist visits, can’t write prescriptions for hep C medications, and have to use hospital back up services like nursing support. The arrangement is called Shared Care – but it’s not popular with many GPs and even some specialists who say it’s a confusing system that doesn’t work well for patients – and it’s stopping some people who need treatment for hep C from going on it. In order to be able to treat hep C patients, GPs need to complete a special training course. They then have to apply for and be granted a licence from the NSW Health Department to prescribe S100 medicines (interferon and ribavirin are in this category). The GP has to be linked to a specialist at a hep C treatment clinic at a public hospital. The GP can do some initial tests, for example blood tests needed to make the diagnosis of hep C, but the GP must then refer the patient to a hospital-based specialist and the specialist must begin the actual treatment with interferon and ribavirin. The specialist must write the first prescription for interferon and ribavirin. The patient can then go back to the GP, who is allowed to write scripts after that, but the scripts have to be filled out from a public hospital pharmacy. The patient must be regularly reviewed by the hospital specialist and the GP must use the hospital back-up services such as nursing care, 24 hour emergency medical treatment if needed, psychologist support and access to fibroscan tests.
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A similar arrangement exists in other states. Dr David Baker, a GP who is authorised to treat hep C at an inner city Sydney GP clinic, says the arrangement is confusing for the patient. “The patient often forgets whether they were meant to see the GP or the specialist on a particular date and goes to the wrong person,” he says. “Test results done at the hospital don’t get sent to the GP, or vice versa,” he added. “Some patients don’t like going to the hospital centre and drop out of treatment altogether. Others only go to the hospital and the GP never sees them again. In the case of rural patients, they may have to travel long distances to see the specialist at a hospital. In part because of these problems with the shared care system, only a fraction of cases of hep C are being treated by GPs. “We’ve got over 210,000 cases of hep C in Australia, and nearly 10,000 new cases every year, with about 3,500 treated every year, and yet only a couple of hundred are being treated by GPs in shared care plans,” Dr Baker says. There are now so many patients needing treatment that the specialist clinics in the hospitals would not be able to cope with the numbers. Patients with early liver disease may be recommended to hold off and await newer, better therapies but GPs could quite easily treat these people, especially those who have mild liver disease and where there are no complications. “After all, GPs have been treating HIV/AIDS patients in their surgeries quite successfully since the early 1990s and there isn’t that much difference between the two conditions in terms of treatments, as they’re both blood-borne virus illnesses that are treated with medications,” he says. In fact, about half of all treatment of people with HIV is now taking place in GP clinics, with the other half treated in specialist clinics. Yet less than 5% of hep C patients who undergo treatment are being treated by GPs under the shared care arrangements.
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Image foreground by Paul Harvey, background via ScrippsHealth.
ep C
“The reasons why GPs are allowed to treat HIV, but face restrictions on treating hep C are partly historical,” Dr Baker says. “In the 1990s, HIV was seen obviously as an emergency situation to get treatment out quickly because so many people were dying. There was a lot of political pressure from the powerful and organised gay community and this led to a rapid roll out of HIV treatment by GPs,” he says. But there aren’t the same political forces at work with hep C. “There hasn’t been the same pressure to get treatment out into the community quickly,” he says. “People living with hep C haven’t had much political support.” “Many are injecting drug users who don’t realise they can access treatment. Many of these people don’t even have a GP,” he said. Also, there have been some Health Department and government concerns over the years about GPs managing the side effects of interferon and ribavirin
– which can be quite toxic. There’s also been the argument that the drugs weren’t effective anyway, although they are more effective now than they used to be and will become more so with the new protease inhibitors boceprevir and telaprevir, which are expected to become available next year. It’s inevitable that the rules will be relaxed for GPs, Dr Baker believes. The specialist centres just can’t cope with the increasing load of hep C patients needing treatment, he says. The GPs will have to take some of the burden. If more GPs were allowed to manage hep C, more people would enter treatment earlier, potentially saving the community the cost of treating end stage liver disease such as liver transplant, he believes. However, few GPs currently want to take up the option of managing hep C patients, says Professor Bob Batey, a hepatitis specialist and Director of the viral hepatitis programs at the Australasian Society
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feature for HIV Medicine (ASHM) which trains GPs in hep C treatment and has been instrumental in lobbying for GPs to be allowed to treat hep C. “GPs see it as the specialists dumping hepatitis patients on them because the specialists can’t manage the workload themselves. But GPs find the shared care arrangements too restrictive so few GPs are making the commitment to treat hep C patients,” he says. But the shared care arrangements are set to become more flexible, says Dr Baker. “The regulations are going to be partly relaxed. The patient will only have to see the specialists once initially, and the GP can do the rest of the treatment – although GPs can refer the patient back to the specialist for further guidance or in the case of complications,” he says.
In some respects hep B treatment is even easier than hep C for GPs. “Hep B treatment is effective and non toxic. So it’s ideally suited for GPs to manage,” he says. For more information about ASHM’s hep C treatment training program for GPs, go to http://tinyurl.com/4xlzzl5 • Peter Lavelle is a freelance health writer who regularly contributes to Hep Review magazine: p.lavelle@optusnet.com.au NB: ASHM have a new project: Hepatitis C Treatment Initiation Pilot, which – at August this year – has 19 patients being initiated and mangaged soley by GPs. Click here for more info: http://tinyurl.com/87usgof
The changes have been agreed to in principle by the Hepatitis C Reference Committee, he says. However, it remains to be seen when they come into effect – “it may take a year or two,” says Professor Batey. Dr Baker believes that GPs should be allowed to take over the whole of treatment, from the beginning, just as they are with HIV. And this model of care – called “primary care” – should be extended to the treatment of hep B, he says.
Image by Kevin N, via flickr.com
“There are very few GPs treating hep B, but there’s many cases out there in the community, particularly amongst immigrants who acquired it at birth in their countries of origin, and who are now at serious risk of liver cancer,” he says.
Specialist treatment at a GP clinic
P
eta Lambakis* had hep C and was treated by a specialist gastroenterologist. But instead of being treated at a public hospital clinic, or private specialist rooms, she attended a GP clinic, where a specialist gastroenterologist visited once a week to see hep C patients. Peta saw the gastroenterologist every 12 weeks during her 48-week treatment. Between appointments with the specialist, she saw GPs at the clinic to have blood tests taken. The gastroenterologist wrote the scripts for the medication, which Peta had filled at a pharmacy at a nearby large private hospital.
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Being a busy woman – managing a hairdressing business in inner city Sydney – Peta says she found it more convenient and easier to make appointments at the clinic than might have been the case at a hospital. “Since my usual GPs are there at the clinic, it meant they had my full medical history and medical records from before I went on treatment. Since I didn’t need to have a biopsy or a fibroscan it meant I didn’t need to set foot in a hospital at all,” she says. * Not her real name
The Van Zandts story: raising a child with hep B
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or Dr Keith Van Zandt and Dede Van Zandt, vaccines are a personal issue. Their daughter Annie has hep B, a disease that could have been prevented if she had been given a vaccine. In this interview, with ONE’s* Malaka Gharib, the couple talks openly about adoption, what it’s like to raise a child with special needs and of course, vaccines. I heard you had a big family. How many children do you have?
DEDE: Six children. Three home-grown and three adopted from Romania: Rebecca, Kyle, Tyler, Hannah, Annie and Sophie. Why did you decide to become advocates for vaccines?
KEITH: I’m not sure we’re advocates for vaccines, but we are advocates for kids, and vaccines became an offshoot of that. There is no more effective way to keep kids healthy than with vaccinations. We see that in this country and worldwide. What was it like raising a child with hep B?
KEITH: It’s a virus, and in the long term, it can cause the liver to become inflamed. It’s a chronic condition of the liver that increases the risk of liver cancer and failure. DEDE: At first it was scary because we didn’t know much about it. Even regular doctors didn’t know much about it. We had to go to a specialist. He was able to quell our fears and tell us that Annie wasn’t going to die from this disease at this point, and we could treat it. We were all for doing the best we could in treating it and making her well. We were afraid every time there was blood on her, and when she fell and cut herself. At first we put on rubber gloves [to protect ourselves], but then we made sure we were immunised and it wasn’t so scary after that.
my story
After we adopted Annie, we lost a lot of friends. Friends didn’t call anymore, and we didn’t go to anyone’s houses. People were so scared of contracting hep B that they thought they would catch it and die. We told her preschool manager and she said no problem – but it was a problem with friends because of a lack of knowledge. Despite your hardships with Annie’s hep B, why did you decide to keep adopting?
DEDE: It didn’t discourage us. It actually opened us more to children with special needs. In your perspective, what’s the most important thing that people need to know about vaccines?
KEITH: The main thing is that number one, they work. They are extremely effective to prevent a whole host of what used to be very horrible diseases, particularly in third world settings where medical care is nonexistent. Simple diseases like diarrhoea and pneumonia kill a lot of kids in Africa. What people need to know is that these diseases are deadly and we become very jaded to the fact that it doesn’t happen here, but worldwide it does. Lots of parents suffer when their kids get sick and die – and don’t have to. You’ve visited Washington to help champion ONE’s vaccines campaign. What excites you about it the most?
DEDE: To be able to share our story and share how important vaccines are. KEITH: I think the scope of who you all can reach – global as opposed to local. If we could make our local story more global, there’s a chance that so many more millions can help. Big thanks to Keith and Dede Van Zandt. ONE is happy and grateful that they are raising awareness for our vaccines petition here in Washington and beyond. • Abridged from one.org (26 Apr 2011) http:// tinyurl.com/448f6en *
ONE is a global charity led by Bono (U2).
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feature Supreme Court ruling opens doors to drug injecting clinics across Canada After a long running political and legal stoush, it seems that Vancouver’s Insite injecting facility has been given the final green light.
he Supreme Court of Canada has opened the door to supervised drug injection clinics across Canada in a landmark decision that ordered the federal government to stop interfering with Vancouver’s controversial Insite clinic. The Court was persuaded by evidence that people who are drug dependent are considerably safer administering their own injections under medical surveillance rather than obtaining and injecting hard drugs on the streets of the city’s troubled Downtown Eastside. In its 9-0 decision, it said the federal government has the jurisdictional right to use criminal law to restrict illicit-drug use but that the concerns it cited in an attempt to close Insite were “grossly disproportionate” to the benefits for drug users and the community. “During its eight years of operation, Insite has been proven to save lives with no discernible negative impact on the public safety and health objectives of Canada,” the Court said. “The effect of denying the services of Insite to the population it serves and the correlative increase in the risk of death and disease to injection drug users is grossly disproportionate to any benefit that Canada might derive from presenting a uniform stance on the possession of narcotics.” In ordering the Harper government to exempt the clinic from prosecution for its activities, the Court said that the government cannot simply close down clinics based on its own distaste for legally sanctioned drug injections. Libby Davies, the New Democrat MP who represents Vancouver’s downtown eastside, applauded the Supreme Court. “It has validated all of these years of struggle and work to show that Insite is a very important resource and service and it saves lives,” she said. Montreal may soon follow Vancouver’s lead in setting up a supervised injection site. Jean-François Mary of Cactus Montreal, a community group that has been pressing to operate supervised injection sites for years, says the Supreme Court ruling removes the group’s last remaining obstacle.
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“The scientific merit was proven long ago, there was only the question of the legality,” Mr Mary said in an interview. “This decision brings us a big step forward – a ruling we can rely on.” He says police and municipal officials in Montreal were unwilling to back the idea of supervised sites without a legal opinion – something that changes now. “If we couldn’t prove the legality, we couldn’t get their support.” Insite was launched in 2003 under a special exemption from prosecution. Chief Justice McLachlin described its creation as a clear instance of cooperative federalism. In 2008, however, the Harper government became disenchanted with Insite and ended the exemption. The move forged an immediate alliance between drug users, the medical community and across the province’s political spectrum. A coalition of groups wasted little time in asking the Courts to clear the way for Insite to continue operating, and the dispute became a source of tension between British Columbia and the federal government. The Chief Justice noted that supervised injection sites are being operated successfully in many other countries, including 70 cities in six European countries and in Australia. “These sites are evidence that health authorities are increasingly recognising that health care for injection drug users cannot amount to a stark choice between abstinence and forgoing health services,” she said. “Successful treatment requires acknowledgment of the difficulties of reaching a marginalised population with complex mental, physical, and emotional health issues.” • Abridged from theglobeandmail.com (30 Sept 2011) http://tinyurl. com/6kaeqxr Also see page 33.
Montage by Paul Harvey. Images via Google
Image by Jude Keogh via Central Western Daily.
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feature Image by Leo Reynolds via flickr.com
Preventing hep C transmission in Australian adult prisons: what are the barriers? Access to prison needle exchange could help prevent hep C in prisons and in the wider community, writes Jack Wallace.
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he report Regulating Hepatitis C: Rights and Duties: Preventing Hepatitis C Transmission in Australian Adult Correctional Settings has been recently released. This research report is an outcome of the Australian Health Ministers Advisory Council (AHMAC) and identifies the regulatory barriers to reducing the transmission of hep C within Australian adult correctional settings.
Hep C and prisons are inextricably linked. People entering prisons are more likely to have been exposed to hep C; within prisons, there is no regulated needle and syringe exchange. This high prevalence and incidence risk for hep C within correctional settings provides challenges to controlling hep C within the community as a whole.
The report audited the many Acts, Regulations and internal guidelines within which hep C prevention in prisons must fit. These guidelines include policy, operating procedures, standing orders, standards, manuals, instructions and rules. While the names, details and stated aims of these legislative arrangements differ between jurisdictions, the aims are similar: the enforcement of security. Within a correctional framework, providing health services appears to be treated as an exceptional, rather than essential, duty of care. While the regulated distribution of needles and syringes is the primary form of hep C prevention intervention available in the community, unregulated and hazardous needle and syringe distribution occurs in correctional settings. In prisons, where hep C prevention programs have been introduced, they have often been implemented as a result of unexpected
opportunities and individual interpretation of legislation, rather than as a result of good public health practice. The Regulating Hepatitis C: Rights and Duties report proposes a regulatory framework in which health interventions, including hep C prevention initiatives, can be embedded within a correctional environment. The framework takes a human rights approach which assumes that the loss of liberty should constitute the extent of punishment, and that inmates should have the same human rights as do other people in the community, including the right to health. Implementing a human rights framework in correctional settings acknowledges that inmates are entitled to a needs-based standard of health care, equivalent to that enjoyed by the community as a whole. • Jack Wallace is a researcher at the Australian Research Centre in Sex, Health and Society at La Trobe University, Melbourne. The report can be accessed via http://tinyurl. com/3rfqgut Hep Review
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feature
In NSW a professional tattooist or piercer must have completed training in infection control by law...true or false? Ask just about anyone that question and they’ll probably answer “true” – but they would be mistaken.
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lthough any individual or business involved in commercial body art must comply with Public Health guidelines, there is no legislation in place in NSW to ensure that a tattooist or piercer has training in infection control procedures. This doesn’t mean that most professionals aren’t aware of infection control. Instead, most tattooists and piercers receive their training through an apprenticeship system, one of the few apprenticeship systems that operates outside of the Vocational Education and Training system in Australia. Good stuff to know if you’re thinking of getting a tattoo or piercing and you’d like to minimise your risk of getting or passing on a blood-borne virus. Another thing that’s good to know is that TAFE OTEN has recently developed a course that covers infection control procedures and is written specifically for people working in the body art industry. The course has been developed in consultation with body art industry professionals, NSW Health staff and Hepatitis NSW. TAFE OTEN offers distance education for people wishing to complete TAFE courses.
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‘Sterilisation – Body Art & Piercing Industry’ has been created to offer the skills and knowledge required to run the practical aspects of sterilisation and infection control for people wishing to work within the body art/piercing/ tattoo industry. To do this program you must have access to sterilisation equipment used within the body art/ piercing/tattoo studio industry. At the completion of this program, you will be able to apply correct infection control procedures and processing of reusable instruments within the body art/ body piercing/ tattoo industry. The Selected Study Program does not lead to an award or qualification, but at the end of your study, you receive a TAFE statement of attainment listing the Units of Competency achieved. This is not an accredited course however the Units of Competency are nationally accredited. For more information on the course, you can check out the OTEN website at www. oten.edu.au • Bruce Cherry, Hepatitis NSW. To find out more about tattooing and piercing, and what to look out for if you’re looking for somewhere to have some work done, check out the tattooing and piercing resources at www.hep.org.au (just do site searches for “tattooing” and “piercing”).
opinion
Brisbane injecting room a One of the movers behind the controversial Kings Cross injecting centre says Brisbane must follow suit to provide a safe environment for addicts.
must
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ustralian Drug Law Reform Foundation president Alex Wodak said Brisbane had a different drug scene to Sydney but the city needed to acknowledge it had a rising drug problem. Dr Wodak, who works at St Vincent’s Hospital in Sydney, said imports of heroin were about to increase into Australia. “The current trend is that drug production is going down in Afghanistan and going up in Burma,” he said. “And that is bad news for Australia, because Burma is the country that supplies Australia.” “We can anticipate that the heroin importation to Australia will be increasing in future years. I think that is inevitable.” Dr Wodak was guest speaker at a Queensland Council of Civil Liberties function where the issue of a safe injecting room in Brisbane was debated. He said there were now 88 drug injecting rooms in eight countries including the Netherlands, Germany, Switzerland, Spain, Norway, Canada and at Sydney’s Kings Cross. The previous New South Wales government decided in 2010 to give recurrent funding to the Kings Cross centre after accepting evidence it prevented injecting drug users dying in the streets. Dr Wodak said Queensland faced a different drug problem. “Queensland has had a large pocket for some time in the southeast where amphetamine injecting has been very common,” he said. An Australian Institute of Health and Welfare study in 2004 showed that 14,100 Queenslanders had injected either heroin, amphetamines or cocaine in the previous 12 months.
Dr Wodak said users injecting amphetamines and prescription opiates were mainly a problem in southeast Queensland. Sydney’s Medically Supervised Injecting Centre reports that: • it has successfully managed more than 3500 drug overdoses without a single fatality; • the number of publicly discarded needles and syringes has approximately halved in Kings Cross since MSIC opened; • there has been an 80% reduction in ambulance call-outs to Kings Cross since MSIC was established, with the area immediately surrounding MSIC showing the greatest reduction; and • MSIC has made more than 8500 referrals to health and social welfare services. Of these, about half were referrals to addiction treatment. Both Queensland’s ALP and the LNP immediately rejected any evaluation of a safe injecting room when the issue was raised by brisbnanetimes.com. au in September last year. Dr Wodak said the evaluation in Sydney and Vancouver showed there were savings from ambulance call-outs and costs to emergency rooms, intensive care units and recovery in wards. “A huge cost saving in Sydney was the reduction in ambulance call outs and then there were costs of the hospitals’ emergency departments and intensive care unit and general wards.” Dr Wodak estimated up to 10 deaths from overdose were prevented each year in Vancouver, and between five and 10 overdose deaths in Sydney by safe injecting rooms. • Abridged from brisbanetimes.com.au (12 Aug 2011)http://tinyurl.com/3cydnp2 Also see page 30. Hep Review
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www.hep.org.au
l
lo
am p e raz ol, t i n n flu ohyp orm R od n p Hy
nitrazepam Mogadon, Alodorm
am ne, p ze uce a i d , D ex m liu nten a V A
l
Benzodiazepines are also risky because they get people so ‘out of it’ that they are more likely to take risks in terms of:
When injected, temazepam always irritates and causes swelling to the lining of the vein. This can lead to rapid vein collpase.
Benzodiazepines
Drugs that damage veins
am oxazep elax, r u M , x Serepa Alepam
na Riv zep otr am il
clo
Vein Care
These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.
Safer Injecting Procedures
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oraz epam Ativa n
Edition 75
December 2011
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Accidentally overdosing because they cannot remember (or work out) what they’ve taken.
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Getting involved in crime or violence
Sharing injecting equipment (sometimes because they can’t remember whose syringes are whose)
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?
?
3
4
5
Sexual behaviour
Damaging their veins through poor injecting technique
The Hep Review harm reduction poster, Dec 2011 (#30). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au
m a p e az tan om exo r L b
te Euhy mazepa pnos m , Nor Tema mison, ze
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Postcard from
In ten minutes Magdalena Harris succeeded in bringing to life – in an otherwise very conservative conference – the lived experience of hep C and treatment.
I
speak with two hats on: as a UK based social researcher, but also as someone who has lived with hep C and cleared it through combination treatment four years ago. We have heard a lot about treatment decisions and treating requirements: whether or not to treat prior to fibrosis; the new therapies; efficacy of treatment in the acute phase, etc. However, what has largely been lost in all this is the individuals’ perspective. A clinical framework and best practice guidelines are required, but we must not forget that whether or not to commence treatment is a decision to be made WITH not FOR the person living with the virus. As a person living with hep C, when considering treatment, my primary desire was to have my lifestyle, my ability to access support and other factors taken into account; to be provided with the full story regarding any possible side effects, including in the post-treatment period, and not to feel rushed into a decision. I will give a very brief overview of my history and experiences of my treatment journey to illustrate these points. I was diagnosed with hep C in 1996 while a heavy drug user and immediately did my best to put it to the back of my mind. I made no changes to my lifestyle as a result of diagnosis and after a decade of heroin use, a year of methadone, some run-ins with the law and various attempts to quit injecting, I finally stopped using ten years ago with the help of a residential rehab. For the first time I moved into a flat with non-users – three so-called normal people. I watched them with interest to see how they lived – it felt like a strange foreign environment. I did not disclose my hep C status as I did not want my flatmates to view me as infectious and potentially ask me to leave. Due to my consistently high liver counts I was referred to a specialist who urged me to go on treatment. However, I was very reluctant to do so. I was living with people I had not disclosed to – how would I explain the interferon in the fridge and any side effects I might experience? I was particularly worried about side effects, especially depression and anaemia and concerned about using a syringe again, with all its associated
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memories. I felt that my concerns were minimised and my questions unanswered by the medical professionals I was seeing. I had managed to resume university after my decade of “field work” but I was fatigued and had to structure my days around being able to sleep in the afternoon. For years, I attributed feeling ill to being in withdrawal. Now the only reason I could see for my brain fog, irritability and increasing fatigue was my hep C. This detrimental impact of the virus, coupled with my living situation as well as fears of relapse and the treatment side effects, felt like a no-win situation. I began to research other people’s experiences of living hep C for my Masters degree in Auckland, leading to a PhD in Sydney. I wanted to know how others dealt with these dilemmas. While some struggled with, or decided against treatment, others talked of completing treatment and feeling better than they ever had before. I thought – I want some of that! This shift in viewpoint was also facilitated by my changed circumstances. I was living with a supportive partner and no flatmates. I had disclosed to workmates – who were supportive – and had some savings. I decided to take leave from university for a semester. I saw two Sydney hepatitis specialists within a month of each other. The first specialist – as soon as I walked into his consulting room – asked what genotype I was. When I said “three,” he said “well, you’ll be doing treatment, you have no choice.” Despite telling him that I did indeed have a choice, that my liver was in good shape (I’d previously had a biopsy) and I was concerned about side effects he repeated twice that I had no choice, that side effects were nothing to worry about and of course I must do it – for really, “I had no choice.” I was so angry after this consultation that my hands were shaking – not angry for me, but for others who might not have my level of hep C knowledge and could find it difficult to question a determined authority figure. We have heard about “myths” of HCV treatment, and a common view is that these are disseminated by people living with the virus. In my experience treatment misperceptions may also stem from specialists.
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m Brussels Understandably my friend was shocked and upset but despite the specialist’s warnings eventually decided to go ahead with treatment; as I did, under the care of a different specialist! One issue, that I think it is important to stress, when considering treatment with current or former heroin users is the issue of the relapse to injecting drug use. This is not so much of an issue for current injectors – and for this reason, this may be an optimal time for people to receive treatment. However, I have concerns about people being advised to go on treatment shortly after they have stopped injecting. This is a medication that can have side effects akin to heroin withdrawals, and for which you have to use a syringe. Despite it being six years since I had injected, when I first held the interferon syringe, it brought back many embodied memories and, interestingly, the next night I wanted to have another. I had to consciously keep myself away from the fridge in order not to have another hit – envisioning myself turning up at A&E with a very embarrassing case of interferon overdose! In regard to the new treatments, of interest was the under-reporting of new side effects – because individuals were not asked. There will be a number of side effects your patients may not tell you about. Perhaps because they fear they will not be taken seriously; they may fear being taken off treatment; they may feel it embarrassing or of little consequence. This can create a negative feedback loop, in that by not asking or being told about
certain effects, providers may feel that particular effects are rare and of little consequence. For example, one interesting, but slightly personal effect of treatment is it makes your pubic hair go completely straight – myself and everyone I knew on treatment was experiencing this. However when I mentioned it to the treatment nurse she said it was the first she had heard of it – not something her patients have felt motivated to share. This leads into my final point – around the post treatment period. This was, in some ways, harder than going through treatment itself. When you are on treatment you have a light at the end of the tunnel – a final end point. You expect to be feeling bad and among those who know you are on the treatment there is some understanding. However, after I had that last dose, I experienced a whole set of new side effects – primarily mood and cognition related – and it felt scary as I had no idea of when the end point would be. So I watched my pubic hair! When it started getting curly again, after about two months, I knew the drugs were coming out my system. My treatment was successful, but my initial treatment decisions were characterised by fear, which could be seen as arising from a purely irrational and emotive place. However, I believe that my fears and decision not to start treatment for those initial five years were well founded. Not only was I not ready, physically or emotionally, but the stigma around this illness made me wary to disclose, which, for a while, impacted on my ability to access support and influenced my decision not to start treatment. It would be good if professionals working in this field are able to take these contextual factors into account and, also, to not minimise or underestimate people’s concerns about the treatment process. It can be a scary prospect and I am glad I waited till the time was right. • Magdalena Harris is a New Zealand born social researcher, currently based in London, UK. http://lshtm.academia.edu/MagdalenaHarris Abridged from conference transcript, provided by National Centre in HIV Social Research.
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Montage by Paul Harvey. Images via Google
For example, the second specialist whom I saw with a friend (I was supporting her in her decision to commence treatment). She was, like me, in good health and had genotype-3. The specialist said to her that “she would be crazy to go on interferon,” that “interferon can kill you.” He said that he had had two patients: one who killed herself on treatment, and another who ended up in a locked psych ward, and that there wasn’t a day that he didn’t think about these people. “I don’t want your daughter to grow up and come looking to sue me because I was responsible for killing her mother,” he went on to say.
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All U need 2 do is ask
Don’t cuff yourse
In the last edition we looked at the Health Survival Tips video. I would like to thank those of you who have taken the time to write in. Let’s see more of that happening.
For many, Justice Health is simply the clinic where you might get a panadol from time to time if you’re lucky. For others it’s a place where they must go every day for essential medications.
I spoke recently to some of the long termers who have now progressed their way through the classification system and are at St Heliers, Muswellbrook – land of the Wanaruah and the Kamilaroi peoples. Did you know that the Kamilaroi tribe was once one of the largest linguistic communities in Australia? Their last known formal communal ceremony was held in 1905.
The hours for the clinic are from 0630 to 1700, Monday to Friday, and 0700 to 1700 on Saturdays and Sundays.
Muswellbrook is located in the upper Hunter Valley NSW. The region was discovered by Chief Constable John Howe in 1819. Major parcels of land were surveyed by Henry Dangar along the banks of the Hunter River for allocation to early settlers in 1824. The township of Muswellbrook was declared in 1833. The valley’s rich soils led to Muswellbrook establishing itself as a significant farming centre. The railway arrived in 1869 and the town experienced significant expansion around this period. The boundaries of the shire were officially defined in 1907 when Muswellbrook Shire was created from within Wybong Shire area. Coalmining began in the 1890s although truly large-scale coal mining didn’t get under way until more recently. There are now eight mines operating in the area (seven of them open-cut) with another six proposed. In this edition, we are having a look at the St Heliers clinic and its services, and comments from some of the guys about the Justice Health clinic. 38
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They have five full-time Registered Nurses, one permanent part-time Registered Nurse, one CSO (admin officer) and an admin clerk. There is a Medical Officer every Friday, a dentist every two weeks and an optometrist every four months. There are a range of clinics: primary health clinics, population health, vaccination, release planning, Aboriginal chronic care, metabolic monitoring, pathology, chronic care, mental health, physiotherapist and X-ray. Liver clinics run every six months with a visiting specialist from John Hunter Hospital. The guys can pick up medications 0645 to 0900, Monday to Friday, and 0700 to 0900 on Saturdays, Sundays and public holidays. An interview with one of the Muswellbrook residents
BOB: What is the clinic experience like for you? Is it like say, Long Bay, where sometimes medication parade takes an hour? RESIDENT: Actually, no it’s very quick, the nurses are great, they get the job done, so we can get our pills and get off to work. I have never had an issue since I got here. Image, top, provided for All you need 2 do is ask by Long Bay MSPC inmate. Image, right by imagestostoptuberculosis via picasaweb.google.com
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elf
feature BOB: Is it a long wait if you need to see the doctor? RESIDENT: No, I waited three days and I saw the doctor. In the meantime though, the nurse assessed me, rang the doctor and got me some pain relief over the phone, it all took 20 minutes. I really have to tell the truth, the justice health nurses here at Muswellbrook are awesome. BOB: How about things like hep C treatment, the dentist, etc? RESIDENT: They are all good too, there are no long waits for any medical service. BOB: Do guys who want to get tested for hep C have any problems getting it done? RESIDENT: No not at all, the nurse sees you almost right away and you get a blood test done and counselling, then later if you need treatment you see the doctor. Everything gets done the way Its supposed to be done. BOB: Is this your experience in every jail? RESIDENT: No way! Some jails are a nightmare for doctors, dentists, etc. You wait a long time. BOB: Well it’s not simple seeing a doctor outside either. Sometimes they don’t have any appointments open for more than a week, and dentists, unless you’re paying for it yourself, can be years.
RESIDENT: No one is saying we should see the dentist the same day, but six months is a long wait when you’re in pain. BOB: I agree but as you know I spent a long time in jail, I saw the dentist fairly quickly when I was in pain, I only waited a week or two at the most. I believe that it is improving all the time. RESIDENT: Yeah, in some jails, here it’s great; no drama. All services at the St Heliers correctional centre, in the words of the residents, are AWESOME. If you have a story to tell about your interaction with health services, hep C testing, etc, write to me at the Hep Review. I will look at what you have to say objectively and will answer your letter. I think it’s safe to say that every correctional centre has its issues with health services; however, St Heliers appears to be getting it spot on with inmates giving them a big wrap. What’s the best way to improve services? It’s for Justice Health to listen to the Inmate Development Committees – who, in turn, listen to you guys. So, it’s important to submit the health survey forms. They do get read, because I have read them personally and I assure you the issues are taken seriously. Improving health services, especially for anyone affected by hep C is something I take seriously. I will personally reply to all your letters. • Bob
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HELLO HEPATITIS HELPLINE Hi. I’ve got hep C, and I manage it pretty well. I see the doctor regularly, I have a specialist I go to twice a year and I don’t drink much alcohol. The reason I’m calling is because I’m starting a new job, and I want to know how much to tell them. I probably won’t need time off, but I suppose they should know that someone who works for them has hep C. That’s right, isn’t it?
It sounds like you’re doing a lot of really great things for your health. Staying in touch with your doctor and specialist and reducing your alcohol use are good ways to try and stay healthy with hep C. Even if it isn’t a big deal for you at the moment, it can be worth thinking carefully about who you tell that you have hep C. Most of the time at work, people with hep C don’t have to tell anyone. There are only two work circumstances where by law you do have to disclose. They are: When you’re applying to join the defence forces (the army, navy or air force), or when you’re already working there, When you’re a healthcare worker who does exposure prone procedures. Those two employment situations are the only times you have to tell anyone at work that you have hep C, but that doesn’t necessarily mean that you can’t work in those fields. In the case of the defence forces, you may be asked to leave if you have hep C (or you might be deemed unsuitable to join in the first place), but that’s determined on a case-by-case basis. If you’re a healthcare worker, you can’t perform exposure prone procedures, but there are plenty of other roles within the healthcare field which hep C positive people can do.
fingers) and something sharp (like a surgical instrument or a piece of bone or tooth). If you’re a healthcare worker who’s not carrying out those procedures, there’s no need to tell anyone at work unless you want to. The reason why there aren’t more jobs where you have to disclose your status is because workplaces have a responsibility to follow standard infection control procedures. Those procedures are designed with viruses like hep C in mind, and if they’re followed correctly, they’re enough to keep everyone safe. Infection control guidelines include treating all blood as though it could pass on a virus, using the same precautions for everyone (regardless of what you know about their health) and isolating infectious organisms rather than isolating people. With those principles (and a few others) in mind, any accidents at work can be handled in a way that minimises the risk of hep C being passed on. Having said all that, some people find themselves in a work situation where they feel comfortable telling other people about their hep C, or where they still feel that their colleagues or bosses have a right to know. That’s all up to you, but do bear in mind that hep C disclosure can be a difficult road. Once it’s said, disclosure can’t be taken back and negative reactions are a reality for many people. So it can be wise to weigh up the pros and cons carefully. • If you’d like more information about disclosure, ways to do it and circumstances where it’s necessary, please get in touch with the Hepatitis Helpline.
Exposure prone procedures involve some pretty specific circumstances: they are procedures in body cavities that are hard to see, where there is a risk of contact between a worker’s skin (eg.
“Hello Hepatitis Helpline” is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity.
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FERRAL. INFO. SUPPORT. RE CONFIDENTIAL
hepatitnise helpli
my story
Multicultural HIV/AIDS and Hepatitis C Service Hep Review
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my story
Multicultural HIV/AIDS and Hepatitis C Service 42 www.hep.org.au www.hep.org.au
The mysteries of belly fat As our waistline increases, so do our liver health risks. Do you know about your visceral fat?
H
ealth professionals are concerned about belly fat because it can trigger: heart disease, stroke, high blood pressure, diabetes, fatty liver, liver cancer, stress, depression and Alzheimer’s. Scientists believe that it is the fat below the surface, called visceral fat*, that really does the damage by producing hormones and chemicals that can cause heart disease and more. Evidence shows that deep-seated fat near an important vein that leads to the liver can transport fatty acids to the organ. The result: high blood lipid readings. How do you know when the size of your stomach is putting you in peril? A general guideline is that women with a waist of more than 88cm and men over 102cm could be at more risk. As we age, most people struggle with weight. This is because metabolism slows down causing lean muscle mass to be lost, therefore burning fewer calories. • Abridged from osceolaiowa.com (15 Aug 2011) http://tinyurl.com/4xem5dj Also see http://tinyurl. com/dljk9h NB: If you have chronic hep C or other liver disease, it’s important to maintain a healthy body weight. See this edition, page 25, and ED72, page 20.
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The Little Book of Hep C Facts Do you know your basics about hep C? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep C Facts, Hepatitis C Council of South Australia. • There are two tests for hep C: Antibody test – a “positive” result means you have been exposed to the hep C virus at some time in your life. It does not necessarily mean that you have hep C now. PCR test – this is used to detect current hep C infection. A “positive” result means you have the hep C virus in your body. • A person with hep C is not required by law to disclose her or his positive status to anyone unless she or he is: a member of, or applying to join, the Australian Defence Force, a healthcare worker undertaking exposure-prone procedures, donating blood, or asked when applying for life or health insurance. • It is illegal to discriminate against a person because she or he has hep C.
The soft interior organs in the cavities of the body, including the brain, lungs, heart, stomach, intestines, etc. esp those confined to the abdomen. *
Image by Darren Hester via flickr.com
This is the third instalment of our excerpts from The Little Book of Hep C Facts. Please see our previous and following editions for all 34 hep C facts – or check out the booklet at http://tinyurl.com/2en75mx
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An update on looking back at blood It can be said that hep C has been eliminated from the blood supply but people continue to be diagnosed as a result of donated blood. Adrian Rigg reports on a long existing Blood Bank program that searches out and provides hep C diagnoses.
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lood is something we all have but don’t give much thought to most of the time. Usually we are only aware of our blood when we lose it through cuts or accidents, give it during blood tests or donations, or receive it via a blood transfusion. The Red Cross Blood Service provides blood and blood products to hospitals so it can be given to patients who need it. The blood is collected from people who are permitted and willing to donate it. There are three main ways in which blood is collected and used: whole blood, containing red cells, plasma and platelets; plasma, which contains white cells, platelets and other proteins; and platelets, which serve to clot blood and heal wounds. The majority of donations go to people with cancer, as well as people who have suffered traumatic accidents, burns, undergo surgery or suffer from bleeding disorders. When a person donates blood at the Red Cross Blood Service the collection process involves asking questions about the donor’s general health and taking blood samples for infectious disease screening. The blood is tested for HIV, hep B, hep C, syphilis and human t-cell lymphotropic virus. In addition to antibody screening they also perform nucleic acid testing (NAT), to test for the actual virus. This test significantly reduces the window period and the possibility of acquiring a transfusion-related infection.
Needle image via NSW Health, background by Scott West.
Blood-borne viruses
Some people have acquired hep B, hep C or HIV as a result of being given blood from a donor who has subsequently been found to have a virus. The diagnosis may come many years after the actual transfusion. When blood products are assessed as potentially being contaminated by a blood-borne infection, the donor and recipients are traced so they can be tested; this is called Lookback. The Lookback programs are implemented in two ways: 44
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Donor triggered Lookback: if a blood donor is screened and found to be positive, or has contacted Lookback and notified they are positive all prior donations are assessed. Lookback then commences the tracing and notification of the recipients that were provided blood by the donor. These recipients are contacted to establish whether they have acquired a transfusion transmitted infection and are referred to clinical and other services if indicated. Recipient triggered Lookback: is the process of attempting to identify an infected donor when a recipient develops a transfusion transmissible infection. This involves the tracing, recall and testing of all blood donors whose blood was transfused to the recipient. Lookback has established that some donors were not aware that they had acquired a BBV and were unaware of the need for testing. A bit of history
The Red Cross Blood Service launched its first Lookback program in NSW in 1947 shortly after World War II, when soldiers were found to have serum hepatitis (an earlier name for hep B) possibly acquired through blood transfusions. To prevent blood recipients from being infected, and to inform the blood donor of their illness, programs were implemented to trace blood donors and blood recipients. Screening of blood for hep B was introduced in 1970, for HIV in 1985, and for hep C in 1990. NAT testing for hep C and HIV was introduced in 2000 and hep B NAT screening was introduced in 2010. In NSW the Red Cross formally implemented Lookback programs in 1985 shortly after the introduction of HIV screening. Lookback has since developed National procedures and committees after becoming a National entity in 1995. There is a Lookback program in each state and territory.
Image by angelsk via flickr.com
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How donor-triggered Lookback works
When the Blood Service dispatches blood products to hospitals and pathology companies, the blood service does not know who the recipient is, even after it has been used. Hospitals and pathology companies order blood products from the blood service and store them, then distribute them to wards and operating theatres according to need. The hospital keeps records of how, and to whom, the blood products were administered. Where possible, the Lookback program traces all blood that was given by the donor. They contact all hospitals where the blood products have been sent and ask for the hospital’s records of how the products were used. Usually this is straightforward, however, there can be complications. For example, blood products may have been ordered for use in an operation and then not used. Also, different hospitals have different requirements for how long they keep records. Once individuals have been identified, Lookback will write to their GP informing them they need to contact their patient. The GP is then able to offer counselling and advice, and refer the patient for blood tests. “We go through GPs because we know they have a relationship with their patient,” says Monica
Nash, Lookback Manager for NSW and ACT. “There is a trust there, and it is less confronting for patients to be contacted by their GP.” The GP manages the notification and makes arrangements for follow-up testing. They also inform Lookback of the test results. Where a recipient is found positive, Lookback will provide a referral and information on support services. Most people who have received blood transfusions will be in regular contact with their GP as they may have health issues which need to be monitored. Occasionally, it can be difficult to locate a patient as they may have moved overseas or no longer need regular contact with their GP or clinician. When there is no clinician involved, Lookback will attempt to make direct contact with the patient and manage all aspects of the notification. Part of Lookback’s intention is to educate GPs and other medical professionals about viruses such as hep B and hep C. They send factsheets and other information to GPs along with the letter informing them of the need to contact their patient. This helps them to become more familiar with the issues around the virus and gain a better understanding of how it affects their patients.
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feature How recipient triggered Lookback works
The future of Lookback programs
The other way the Lookback process can begin is by a blood recipient finding they have a blood-borne virus. Lookback will request the recipient’s transfusion records from the hospital and commence an investigation to identify all the implicated blood donors – the person may have received blood products from several different donors in one instance, or subsequent instances. Each of these donors will be traced and asked to be tested. Pre- and post-test counselling is managed through Lookback Unit. Even when one donor tests positive for the virus, the process continues until all the donors have been tested. This is to ensure that anyone who may possibly have the virus is made aware of it, to help prevent them spreading the virus and to give them the opportunity to seek support and treatment. In some cases, not all donors can be located so the source of the virus may not be known.
People will always need blood products for many reasons; some in a single instance, and some throughout their lives. “One in three Australians would need blood in their lifetime,” says Red Cross Blood Service spokeswoman, Kathy Bowlen. “As long as there are blood services, Lookback programs will exist.”
“People referred to TRAIDS by Lookback may choose to take up these services, or they may just appreciate speaking with someone about these issues,” says Barbara Luisi, Deputy Manager, MHAHS.
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Lookback can only occur when the blood service is made aware of the possibility of a transfusionrelated infection. They encourage anyone who has HIV, hep B or hep C and has ever received blood products to contact them, even if they think they may have acquired the virus from another source. This can help them prevent further transmissions and encourage people at risk to be tested. • For more information, phone the NSW Red Cross Blood Service Lookback Program on 9234 2309.
Image foreground by Paul Harvey, background by Newbirth35, via flickr.com
Everyone who comes into contact with the Red Cross Blood Service Lookback program is treated in the same way and offered the same services, including counselling and referral to other organisations. One of these is TRAIDS, a service for people who have contracted HIV or hep C from a blood transfusion. TRAIDS, managed by the Multicultural HIV and Hepatitis Service, (MHAHS) provides counselling, case management and referral for clients who are referred through the Lookback service.
Although blood screening has improved over the years, there are still window periods in testing for viruses. Screening of blood can never be said to be 100% accurate in detecting all viruses; this is one of the reasons that Lookback programs will always be needed. Some people can find out that they had hep C many years ago and have cleared the virus without ever knowing they had it; in these cases the program still has to investigate their past blood donations or transfusions and trace any other recipients. Additionally, some people may be diagnosed with hep B or hep C and their only risk factor was a blood transfusion in the years before screening was so thorough. Lookback has a duty to support these people, and locate anyone else who may have also been at risk from the same blood products.
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Letters News HEPConcert article Can your GP treat your hep C? An update on looking back at blood Interferon irritability article All you need 2 do is ask Opinion page Hello Hepatitis Helpline People's personal stories Research update pages Keyhole to our work Harm reduction poster Promotions Q&A
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Letters News HEPConcert article Can your GP treat your hep C? An update on looking back at blood Interferon irritability article All you need 2 do is ask Opinion page Hello Hepatitis Helpline People's personal stories Research update pages Keyhole to our work Harm reduction poster Promotions Q&A
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Hepatitis C factsheets Workplace issues Infection risk Employee obligations Employer obligations Pre-employment medicals Anti-discrimination law relating to the workplace Legal advice Also see
These workers should refer to guidelines from their state or territory health authority on the performance of exposure prone procedures (see NSW Health circulars, 98/11 and 99/88, accessible from the Hepatitis Helpline). Defence Force personel who are diagnosed with hepatitis C should be aware their base doctor will inform the ADF. If personel receive a diagnosis while “off base”, they are obliged to inform the ADF. In any workplace, like everybody, a person with hep C should follow standard first aid and infection control procedures in the event of any blood spill situation. This ensures others do not contract their illness, and that they don’t contract any additional illnesses.
Infection risk
Employer obligations
Transmission of hep C virus occurs when blood from someone with the virus enters the bloodstream of someone else. The virus is not passed on through general contact between people. Because of this, there is negligible risk in the workplace – except for certain sectors such as tattooing, body piercing and medical fields involving “exposure prone procedures” (work procedures where there is potential contact between a health care worker’s fingers or thumbs and sharp surgical instruments or bone splinters in body cavities or confined body spaces).
In line with Federal Privacy legislation, and because hep C is classified as a disability and covered under anti-discrimination legislation (in NSW), employers must not disclose the hep C status of any employee, contractor, customer or client to anybody else. It would be appropriate for a management team, though, to discuss a person’s illness in regard to the issues listed below.
In line with Occupational Health & Safety legislation, all workplaces must provide readily accessible first aid and infection control measures. Any blood or body fluid spill in the workplace should be considered potentially infectious, whether or not a person is know to have any infectious disease (also see First aid factsheet).
Employee obligations Except for special circumstances, employees do not have to inform anybody whether they have hep C or not – including workmates, employers or customers. Health care workers involved in exposure prone procedures are obliged to inform their employer.
Working people who develop illness are able to take sick leave and possibly long-service leave, but additional time off can cause problems. Employers do have a legal responsibility, though, to make reasonable modifications to the workplace to accommodate people’s disabilities. Amongst other options, employers may be able to change someone’s position from full-time to part-time, adopt flexitime arrangements, allow working from home where appropriate and/or reduce the amount of physical activity required within a job.
Pre-employment medicals Many employers routinely use pre-employment medical tests (“medicals”) as part of their selection process for advertised jobs. These tests can be a valid and useful for employers but they are obliged to protect the privacy of job applicants.
This factsheet was produced by Hepatitis NSW and was last reviewed in November 2011 To view this complete (two-page) factsheet, and our entire range of 40 factsheets, Hepatitis Helpline infoline and HepConnect peer support service: 02 9332 1599 / 1800 803 990 please go to http://tinyurl.com/3f2gx2p Web info: www.hep.org.au Web peer support: www.hepcaustralasia.org
Hep Review
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December 2011
Hepatitis NSW Inc is a community-based, non-government organisation, funded by the NSW Health Dept.
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Interferon irritability
Yes, interferon causes mood alteration. People have a tendency to become a bit...well, grumpy. This won’t exactly breaking news for anyone who’s done interferon treatment or lived with someone doing hep C treatment, writes
D
o a quick Google search of “riba-rage” and you will find many pages of peoples’ stories and experiences. The hep C online community seems to be well aware of the irritability-anger continuum caused by interferon, but is everyone else in the viral hep business? At the risk of being picky, mood stuff is caused by interferon not ribavirin, but I concede that interferon-rage doesn’t slip off the tongue quite as easily as riba-rage so we’ll let it rest. The ribavirin component raises an interesting issue. It’s noticeable that people doing interferon monotherapy for hep B seem to experience far less mood alteration than those doing the interferon and ribavirin combination for hep C. Why should this be? It’s not precisely known how ribavirin works, but we do know that ribavirin enhances the effectiveness of interferon, so it’s plausible that ribavirin enhances the side effects of interferon as well (that’s my theory anyway). I first became aware of the scale of the irritability issue some years ago when we conducted focus groups to ask about the impact that interferon treatment has on the family. When we analysed the transcripts from these groups, the degree of anger and irritability that people were experiencing was quite overwhelming – it just leapt off the pages. This caused us some consternation as we hadn’t previously been aware of the magnitude of the problem. Common knowledge is that interferon causes depression – as indeed it does for some people – but having become “irritability-aware” it is apparent that far more people experience angry irritable moods than low depressed moods. Irritability and anger are emotions involving different study approaches. Whereas irritability is a symptom of many psychological ailments, it’s not a recognised stand-alone condition, so there’s no diagnostic criteria that defines “this is irritability”. There are many depression rating scales available for use but few scales designed to pick up irritability, and none that are specific for interferon-related mood alteration.
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To state the obvious; if you’re looking for depression, you’re unlikely to find irritability. The individual may be as irritated as a wounded bull but a depression rating scale won’t identify this. The “interferon-related” bit is also important as mood alteration brought about by interferon is complex to say the least. The clinical explanation for interferon-related mood alteration is a deficit in the availability of serotonin – one of our “feel good” chemicals. So, not enough serotonin and you’ve got mood alteration. But consider: sleepless nights and itchy skin are very common side effects of interferon, not to mention the ribavirin rash. A person who is dog tired and constantly itchy is likely to become a bit tetchy – it may have nothing to do with serotonin levels. Likewise, poor appetite and poor sleep patterns are diagnostic of depression, but they’re also “the norm” for someone on interferon. Does this lay the way open for over diagnosis of depression? Given these anomalies, I decided to see what the professional journals had to say on the subject. Much time, paper and ink later, I had downloaded 68 papers on the subject of psychiatric side effects of interferon (for hep C treatment). An aside – why does it cost more to replace ink cartridges than it does to buy a new printer? Anyway, having had a good look at these papers, only 18 of them mentioned irritability. Having had an even closer look, only 10 included any data on irritability, and only three had intent to research anger/ irritability. Most of the papers explored the area of interferon and depression. Two studies in particular are worth mentioning. One found that 77% of those people studied experienced irritable mood1; the other found 75% did so2. This does not surprise me as this reflects the experience of people attending the Liver Clinic. What was surprising, in fact astonishing, was that these very significant findings were given one line in the result section of the paper, and then never mentioned again –
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Image by TushyD via flickr.com
be ground Helen Blacklaws.
not one more word on the subject of irritability, all other discussion was about depression. Authors of another study detailed some consequences of irritability; people had reported that their mood had affected relationships and caused problems at work3. Here again, these are problems that people frequently tell us about. So obviously, irritability is a major issue. The aim of treatment is to get rid of the virus – not divorce and the sack. It’s my conclusion that irritability is an underappreciated side effect of interferon. The people who experience it know all about it, but it seems that irritability is perhaps not fully recognised as being a commonly occurring and significant problem. This has implications. Whilst depression is not without stigma, it is an established medical condition; irritability is not. People may feel comfortable discussing depressed feelings, but Schaefer, M., Schmit, F., Folwaczny, C., Lorenz, R., Martin, G., Schindlbeck, N., et al. (2003). Adherance and mental side effects during hepatitis C treatment with interferon alpha and ribavirin in psychiatric risk groups, Hepatology, 37, 443-451. 2 Wichers, M. C., Koek, G. H., Robaeys, G., Praamstra, A. J., & Maes, M. (2004). Early increase in vegetative symptoms predicts IFN-induced 1
less comfortable about disclosing they’ve yelled at the kids and kicked the cat. They may feel embarrassed and therefore not report irritable angry mood. We need to bring the subject of anger and irritability firmly into the arena so that people understand this is a common side effect and not a personality failing. This way, strategies such as anger management can be used to help. Lastly, we live in an “evidence-based” world; if the evidence on which we, as health professionals, base our practice on doesn’t reflect the full extent of our patients’ experience, we may not be providing optimum care. I’d like to acknowledge the wonderful team at the Central Coast Liver Clinic, and the awesome people who attend our clinic. • Helen Blacklaws is a Nurse Practioner at the Central Coast Liver Clinic, Gosford/Wyong, NSW. cognitive-depressive changes. Psychological Medicine, 35, 433-441. 3 Russo, S., Kema, I. P., Haagsma, E. B., Boon, J. C., Willemse, P. H. B., den Boor, J. A., et al. (2005). Irritability rather than depression during interferon treatment is linked to increased tryptophan catabolism. Psychosomatic Medicine, 67, 773-777.
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obituary Owen Westcott 1946-2011
O
wen Westcott lived honourably and bravely. He began his career teaching mathematics at Riverview College and then completed a science degree at Macquarie University in 1972. From 1976 to 1981, while engaged in immunological research at the Royal Prince Alfred Hospital, Sydney, Owen learned of the seriousness of the hepatitis epidemic and threat of an HIV outbreak among people who shared injecting equipment. In 1989, in the early days of needle syringe programs in Australia, Owen started working at the then new needle syringe program in Redfern. From the Redfern needle syringe program, Owen moved in 1995 to the NSW Department of Health where he remained Manager of the Department’s Harm Minimisation Unit until 2008. Owen was the lead officer for the needle syringe program, hep C and the Medically Supervised Injecting Centre. He was very involved in behind the scenes preparation for the “landscape-changing” NSW Drug Summit in 1999. The late 1990s and early 2000s were difficult years: drug availability was high and drug policy was contested, charged and visible. Owen’s support for the state’s needle syringe program is the work for which he was best known and most admired. Owen prepared briefings for a number of Health Ministers. His briefings on the needle syringe program set out a compelling case for Health Ministers to support a program with immense benefits to public health, social well being and the economic interests of NSW. Owen believed that government officials should provide Chief Health Officers and Ministers with frank and fearless advice. His thoughtful, strategic and committed support for the NSW needle syringe program also helped buttress an important but vulnerable public health intervention for a severely disadvantaged population across Australia. Good policy and clever politics were often at loggerheads. Owen never forgot while working in the Department of Health the lessons he had learnt of the harsh realities of life on the streets of Redfern. His work was widely admired and deeply appreciated by people who inject drugs, clinicians, researchers and other government officials. Owen’s approach to the NSW needle syringe program was based on a profound respect for scientific evidence and an equally deep
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seated respect for human rights. He realised that his sharp analytical skills and tenacity would never be quite enough but in an irrational world had to be complemented by a certain wilyness. Though very capable and hard working, Owen never lost his self effacing modesty. Owen’s strong commitment to social justice and human rights and his fearlessness was evident when he took part in the Australian Freedom Rides in 1965. He attempted to “liberate” the upstairs section of the Walgett Cinema, leading the invaders seeking to overturn discrimination and segregation in the town. Though badly beaten up and his beloved car destroyed, Owen never wavered. He sought legal advice in response to charges arising from the Freedom Rides from a then unknown barrister, Mr Michael Kirby. His barrister continued to follow Owen’s career with great interest, always remaining a fervent admirer. The pair had met earlier at Sydney University where Michael Kirby had been struck by Owen’s courage, strength and kindness and his deep engagement in society, especially Aboriginal issues. There were other examples of Owen’s fearlessness. When US President Lyndon B Johnson visited Sydney in October 1966 and was met with rowdy anti-Vietnam War street demonstrations, NSW Premier Robin Askin directed the motorcade to “ride over the bastards.” Owen took Askin’s order as an invitation to remain lying on the ground in front of the motorcade. Owen moved to Newcastle in 2008 where he continued to work for people who inject drugs. After his death, friends and colleagues shared floods of e-mails testifying to their grief, deep affection and love for Owen. Owen was a much loved father of Matthew and Andrea and a cherished brother of Mark, Kent, Angela, Peter, Sam, Glen, and Leticia. Owen had been married to Anne and then Peg. In recent years Owen had been a partner to Kerri. Owen died suddenly, a legend in his lifetime. • Obituary provided by long-time sector workmates.
obituary
Peter Mathews 1959-2011
I knew Peter well, and for very many years. Peter was both Vice-President and CEO of Haemophilia Foundation NSW and Vice-Chair of Haemophilia Foundation Australia, and had hep C on top of underlying haemophilia for very many years.
jigsaw puzzle that is haemophilia could be brought closer to completion. Peter was a delightful, warm and open man, accepting of all others, and never bitter about how he contracted hep C.
When I last met with Peter he told me that the end of this stage of his life may not be far for him. But no matter what we prepare ourselves to expect, it’s still a shock and a huge loss when that end comes. I last visited Peter at his family home in Asquith, Sydney’s far northern suburbs some five or six months ago – I am so glad I did.
He was fiercely independent and proud, and a good friend. He was a quiet activist and an advocate, both for people with haemophilia and for all people with hep C. Peter and I worked closely together during the 2004 Australian Senate Inquiry into Hepatitis C and the Blood Supply. He was a solid source of inspiration for all people with haemophilia, and for the workings of Haemophilia Foundation NSW and Haemophilia Foundation Australia, and for our work at Hepatitis NSW.
I met Pete’s wife Virginia – a wonderful, supportive and wise woman, and their two children, Grace and Thomas. It was a rainy day. We sat in their beautiful glass covered sun room at the back of their home overlooking a large garden, drinking tea, chatting about work, life, renovations and the history of their home. Being so wet, the family dog was allowed in and stayed close to Pete’s chair, ever mindful of the treat.
Many people will be greatly saddened by Peter’s passing: the team at the Haemophilia Centre at RPAH NSW who cared for and supported him since he was a teenager; Dan Credazzi, President of Haemophilia Foundation NSW and his board and members; Sharon Caris, CEO of Haemophilia Foundation Australia and all the national Board and staff colleagues; people affected by haemophilia across NSW and Australia.
Peter was so ill and debilitated on that day. He had HCV-related hepatic encephalopathy – primarily as a result of his liver having failed. But Peter was a resilient fighter – he bounced back time and time again and was adamant that his poor health could be overcome.
Our love, condolences and thoughts are with Virginia and with Grace and Thomas, with Peter’s parents and with his other family and friends.
Up to the end Peter was a fighter, Virginia told me. He was exhorting her to travel to Wagga Wagga with him to indentify and contact Aboriginal people with haemophilia so that the detailed
Peter, may you rest in the peace you so richly deserve. • Stuart Loveday, CEO, Hepatitis NSW
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Image by Squid! via flickr.com
I
t is with great sadness that I advise of the passing, on 5 September 2011, of Mr Peter Mathews, a long time colleague, friend and supporter of Hepatitis NSW.
promotions
hep C bookmarks O
ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
w w w.h ep .
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990). • Hepatitis NSW
join us Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
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g.au
or call the
Hep C Helpline (see over)
54
www.hep.org.au
sms
0404 44 Don’t discr
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Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. is C Hepatitis People with hep C come from all bac . kgr catch oun hard to ds. accurately ass You can’t ume anythin about them. g It is not transmitted by who e someon Hep C is ver touching y diffi cult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid bloodsame knives and forks. to-blood con tact with oth er people, you are not at risk. It is transmitted when So if infected blood from one hep you find out someone has C, support the person gets into the m and don discriminate against them. ’t bloodstream of someone else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)
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Hep Review
Edition 75
December 2011
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Bathurst region hepatitis clinic
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free hepatitis service is available via an outpatient medical clinic at Bathurst Base Hospital. All people with hep C who would like assessment, treatment and follow up, will need a referral from their local GP to attend the clinic which is in the renovated historic building on the Bathurst Base hospital campus. The service has two visiting gastroenterologists; Dr McGarity and Dr Mackender who will assess patients for suitability of treatment, and a nurse Katherine McQuillan to support patients throughout their treatment course. Lifestyle education, monitoring of side effects and referrals to allied health service will be available.
www.gethealthynsw.com.au
Hep C treatment is more effective if you’re in better shape: not carrying too much extra weight, and not tending towards type-2 diabetes. With better treatment options on the horizon, perhaps now is a good time to ask yourself, Do I want to get healthy? If the answer is yes, give the gethealthy campaign a call. Ed. 56
www.hep.org.au
This is a great opportunity to finally treat your hep C with the support of our team and confidential service. Contact your GP for a referral today. • If you would like more information about treatment and our service, contact Katherine McQuillan on 02 6330 5866 or 0407 523 838
membership matters Who can become a member of HNSW?
Join up now
Anyone can become a member of Hepatitis NSW. If you have an interest in hepatitis and want to find out more or become active in helping to do something for people living with hepatitis then we’d encourage you to sign up!
To ensure that we remain in touch with the changing needs of people living with or affected by hepatitis in NSW, we need to hear the opinions of a broad cross-section of people. We’ll ask you from time to time to give us your opinion on issues of concern and our plans for the future
How much does membership cost?
Waged ($25) Professional Healthcare Worker ($40) Community Based Organisation ($50) Public / Private Sector ($70) Concession ($10) Zero fee ($0) (NSW only)
We’ll send you invitations to take part in a range of campaigns and fundraising activities for HNSW. Register your interest in getting involved now – send an email to campaigns@hep.org.au
What are the benefits of becoming a member?
Join up and, if you want, you can stand for election as a Board Member of Hepatitis NSW
You will get quarterly copies of Hep Review, Transmission Magazine and Member’s News on request along with regular e-news updates keeping you informed on hepatitis issues, our work, campaigns and fundraising activities There are plenty of opportunities to get involved, should you want to, that are exclusively for members Membership can all be done online so it’s easy, quick and convenient to stay informed
A historical perspective – April 1997 Headlines from 15 years ago...
• Overall theme: Hep C’s impact on relationships • ANCARD announces its expansion to take on hep C • Possibly, the first photo of HCV • First Australasian conference on hep C • 12 months interferon (mono) approved • HepCare trialing a new approach • Streetwize: can a comic book stop hep C • Hepatitis NSW’s first web presence: Span • Treatment trials update: Aushep 4 & 5 If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy. • Taken from The Hep C Review, Edition 17, April, 1997.
Have a vote in elections for our Board of Governance (the majority of our Board are elected by our members).
We are accountable to our members. Through Member News, we will keep you up to date with new developments in HNSW. As a member, you can attend the Annual General Meeting (AGM) and speak directly with the Board about our work. NB: Member News is an info pack, posted quarterly to financial members of Hepatitis NSW.
A keyhole to our work
Continued from page 7. Staff changes
As we draw to the close of another year we say our farewells to staff members who have moved on to pastures new and thank them for all of their hard work and dedication over the years: Niki Parry (Coordinator Client Services), Scott West (Project Officer Information & Resources), Penny Scott (Project Officer Education & Development) and Gabrielle Lipscomb (Organisational Services Officer). We warmly welcome Stephen Scott (Coordinator Client Services), Rhea Shortus (Project Officer Information & Resources), Kerry Walker (Project Officer Education & Development, Aboriginal Projects) and Damian Young (Acting Organisational Services Officer). Each of them comes with new enthusiasm, fresh ideas and a wealth of skills and experience. We welcome them to Hepatitis NSW. • Hepatitis NSW
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research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need.
Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. This helps develop consensus opinion on particular research topics and broadens our overall knowledge. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.
Shark-derived drug may treat viruses
Pitavastatin may enhance hep C antivirals
USA – A unique compound originally isolated from sharks could prove to be a promising treatment for heps B and C, and other viral diseases, researchers say.
Japan – Lipid-lowering pitavastatin (Livalo) might improve viral clearance when used alongside interferon and ribavirin, a new pilot study from Japan shows.
Researchers say they hope to begin human trials to test the compound, squalamine, within the next year.
Coauthor Dr Shuhei Yoshida, of Beth Israel Deaconess Medical Center in Boston, told Reuters Health that the study was confined to patients with lipid abnormalities and so the results don’t apply to patients with normal lipid metabolism.
Georgetown University Medical Center researcher Dr Michael Zasloff and colleagues first discovered squalamine almost two decades ago while studying sharks in hopes of finding new, naturally occurring antibiotic agents. His more recent research led to the discovery that the shark-derived compound works in a completely new way that could make it an effective antiviral drug, he says. “Laboratory and animal studies confirmed that it had unambiguous activity against viruses that attack cells in the liver and blood, including those that cause heps B and C,” Zasloff says. Zasloff says because it makes the host tissue less receptive to infection instead of directly targeting the virus, viral resistance may not be an issue. Infectious disease specialist Dr Bruce Hirsch calls the research intriguing but he says it is too soon to say if the compound will prove to be a useful antiviral agent in humans. Dr Zasloff talks about his work at http://tinyurl. com/6c5cez4 • Abridged from webmd.com (19 Sept 2011) http://tinyurl.com/695gh7j
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Pitavastatin lowers patients’ insulin resistance and the researchers point out that high insulin resistance in chronic hep C impairs the response to therapy. All of the patients had genotype 1b and were receiving pegylated interferon and ribavirin. Twenty-one patients received add-on pitavastatin (1-2 mg/day) for 48 weeks while an equal number continued with the standard therapy. In the pitavastatin group, the viral levels were undetectable in 29% at 4 weeks, 57% at 8 weeks, 81% at 12 weeks, 86% at 24 weeks, and 86% at 48 weeks. The corresponding values in controls were 5%, 33%, 48%, 62% and 67%, respectively. There were no significant adverse reactions with pitavastatin. Just how pitavastatin acts to limit HCV replication isn’t clear, Dr Yoshida admitted. The researchers plan further studies with larger populations and more varied patients. • Abridged from medscape.com (18 July 2011) http://tinyurl.com/6ldop2k
research updates Four-drug combo shows early promise
100% cure rate without interferon
USA – Combining traditional therapy for hep C with the newly approved drug telaprevir (Incivek) and an investigational oral HCV polymerase inhibitor boosted 24-week complete virologic response rates to 90% in a phase II study, the drugs’ manufacturer said.
New Zealand – An interferon-free regimen for the treatment of hep C might soon be available, according to data from the ELECTRON trial, presented at the American Association for the Study of Liver Diseases 62nd Annual Meeting.
Among 30 patients receiving a high dose of the investigational product, VX-222, along with peginterferon, ribavirin, and telaprevir, 27 had undetectable genotype 1 HCV viral loads at 24 weeks, according to Vertex Pharmaceuticals. Fifteen patients received the regimen for only the first 12 weeks, when viral loads were rendered undetectable in blood samples taken at weeks two and eight; 14 of those patients still had undetectable virus at week 12, the company said.
The ELECTRON study looked at PSI-7977 (Pharmasset), an interferon-free regimen of PSI-7977 plus ribavirin. It achieved a 100% sustained viral response (SVR) at 12 weeks in all study subjects. Another study into PSI-7977, the PROTON trial was also reported at the meeting. “PSI-7977 has the potential to dramatically change the treatment paradigm for HCV,” said lead study investigator Dr Ed Gane, from Auckland City Hospital in New Zealand.
Complete virologic responses were also seen in all 13 patients who were not eligible to stop treatment at 12 weeks and who therefore took the combination for 24 weeks.
“The aim of the ELECTRON trial was to determine the shortest duration of interferon, if any, required to achieve SVR when PSI-7977 plus ribavirin are administered for 12 weeks,” Dr Gane explained.
The study arms included in the interim analysis tested 400mg and 100mg of VX-222 along with the three other drugs in 30 and 29 patients, respectively.
Results after treatment initiation were dramatic. “All patients achieved a rapid virologic response, with over 80% being nondetectable at two weeks,” reported Dr Gane.
Somewhat lower response rates were seen in the 100-mg arm, with 83% of patients (24 of 29) having undetectable virus at week 24.
All patients had undetectable HCV at three weeks; furthermore, all patients achieved endof-treatment response. No cases of treatment resistance were observed.
The study – called ZENITH – also had four other arms. Two, in which patients received only VX-222 and telaprevir, were discontinued after interim analysis disclosed excessive rates of HCV viral breakthrough. Two others including VX-222, telaprevir, and ribavirin were added later. Vertex said it expected to report results from these all-oral arms next year. All patients in the trial were infected with HCV genotype 1. There were no placebo arms. • Abridged from medpagetoday.com (26 July 2011) http://tinyurl.com/6char6y
“Even following cessation of interferon, or with no interferon, there were no virologic breakthroughs on treatment.” There were no serious adverse events, and the mild to moderate events observed were attributed to either interferon or ribavirin. Significant improvements in safety and tolerability were seen in the interferon-free treatment group. No safety signals for PSI-7977 were observed, and there were no treatment-related discontinuations. “These data clearly demonstrate that PSI-7977 exhibits high potency and has a high barrier to resistance,” Dr Gane said, noting that the drug is being advanced in phase 3 investigations in all hep C genotypes. • Abridged from medscape.com (9 Nov 2011) http://tinyurl.com/6v8tgzk
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research updates NSP and OST and hep C transmission
Education and outcomes in vulnerable populations.
UK – This study investigated whether opiate substitution therapy (OST) and needle and syringe programs (NSP) can reduce hep C transmission among injecting drug users.
USA – Hep C knowledge is limited in injecting drug users. Vulnerable populations including drug users are disproportionally affected by hep C. Effective education can potentially reduce disparity in HCV prevalence and its outcome in this population.
It involved a meta-analysis and pooled analysis, across six UK sites (Birmingham, Bristol, Glasgow, Leeds, London and Wales), community recruitment. A total of 2986 drug users were surveyed during 2001-09. Questionnaire responses were used to define intervention categories for OST (on OST or not) and high NSP coverage (≥100% versus <100% needles per injection). The primary outcome was new HCV infection, measured as antibody seroconversion at follow-up or HCV antibodynegative/RNA-positive result in cross-sectional surveys. On analysis there is good evidence that uptake of opiate substitution therapy and high coverage of needle and syringe programs can substantially reduce the risk of hep C transmission among people who inject drugs. Research is now required on whether the scaling-up of intervention exposure can reduce and limit hep C prevalence in this population. • Katy Turner, Sharon Hutchinson, et al. The impact of needle and syringe provision and opiate substitution therapy on the incidence of hepatitis C virus in injecting drug users: pooling of UK evidence. Addiction. Vol 106, Issue 11, pages 1978–1988, November 2011. Abridged from http://tinyurl.com/65ctpjf
This study aimed to assess the impact of formal hep C education and factors associated with improved knowledge in the vulnerable population. Over 18 months, 201 patients with hep C underwent a two hour standardized education and completed demographic and pre- and posteducation questionnaires. Patient characteristics were: 69% male, mean age 49±10, 49% White, 26% African-American, 10% Latino, 75% unemployed, 83% high school education and above, 64% were injecting drug users, and 7% were HIV coinfected. Baseline knowledge scores were higher in patients with at least a high school education. Baseline knowledge scores were lower in African Americans and older patients. Following hep C education, the overall test scores improved significantly by 14% specifically in the areas of HCV transmission, general knowledge, and health care maintenance. There was a high compliance with liver speciality clinic attendance following education. Formal hep C education is effective in improving knowledge. Although White race, younger age, and higher education were predictors of having more knowledge prior to education, all patients independent of racial background had a significant improvement in their knowledge after education. Therefore, promoting effective hep C education among vulnerable populations may be an important factor in reducing the disparities in hep C disease. • Surjadi M, et al. Formal patient education improves patient knowledge of hepatitis C in vulnerable populations. Dig Dis Sci. 2011 Jan;56(1):213-9. Epub 2010 Oct 24. Abridged from http://tinyurl.com/6fhycsx
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research updates Managed care at a hep C specialist centre
Specialist assessment and treatment for hep C
UK – Infection with the hep C virus commonly occurs in patient groups who have difficulty accessing conventional medical care, reducing their chance of successful antiviral therapy. Managed care networks (MCNs) have been suggested as a mechanism of improving access to care; however, there is little evidence to support their use in patients with hep C.
Australia – Assessment and treatment for hep C in the community remains low. We evaluated factors associated with hep C specialist assessment and treatment in a cross-sectional study to evaluate treatment considerations in a sample of 634 participants with self-reported hep C infection in New South Wales, Australia.
The aim of this study was to evaluate the impact of a MCN for patients with hep C. This was a retrospective cohort study of all individuals in our area who had received a positive hep C antibody test between August 1994 and June 2008. The MCN introduced a new referral pathway, which included non-medical referrals and outreach nurse-led clinics. These interventions were introduced in 2004 and evaluated in 2008. After the introduction of the MCN, the proportion of individuals who accessed care increased from 61% (280/430) to 82% (721/875). There was an increase in non-medical referrals with 81 (18%) being directly referred from Drug Problem Services and 75 (17%) from the Prison Service. The changes to referral did not have a negative impact on treatment outcomes as the number who completed treatment increased from 66% (43/65) to 73% (98/133) and the sustained virological response increased from 50% (33/65) to 60% (81/133). This study provides evidence that the collaboration of health care professionals within a network can have a radical effect in improving access to care in a traditionally hard to reach population. This has been achieved with little additional resource, but rather working smarter with existing staff.
Participants having received hep C specialist assessment (n = 294, 46%) were more likely to be have been older (vs <35 years), have greater social support, hep C related/attributed symptoms, a diagnosis of cirrhosis, have asked for treatment information, have greater hep C knowledge, have been told by a doctor to go onto treatment, and less likely to be receiving opiate substitution therapy and never to have seen a general practitioner. Participants having received hep C treatment were more likely to have greater fibrosis, greater hep C knowledge, know someone who has died from hep C, been told by a doctor to go onto treatment, were less likely to have been female, have recently injected and be receiving opiate substitution therapy. These data identify modifiable patient-, providerand systems-level barriers associated with hep C assessment and treatment in the community that could be addressed by targeted interventions. • J Grebely, J Bryant, et al. Factors associated with specialist assessment and treatment for hepatitis C virus infection in New South Wales, Australia. J Viral Hepat. Volume 18, Issue 4, pages e104–e116, April 2011 Abridged from http://tinyurl.com/3zbj97c
• Tait JM, McIntyre PG, McLeod S, Nathwani D, Dillon JF. The impact of a managed care network on attendance, follow-up and treatment at a hepatitis C specialist centre. J Viral Hepat. 2010 Oct;17(10):698-704. doi: 10.1111/j.1365-2893.2009.01227.x. Abridged from http://tinyurl.com/3pgnm9d
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interferon-based treatment Interferon-based treatment Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily. Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information
Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly anti-HCV positive and HCV RNA positive). Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms
of contraception (one for each partner). Female partners of men undergoing treatment must not be pregnant. Age: People must be aged 18 years or older. Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information). Duration and genotypes
For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points
People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests must be performed at the
same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment
From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment. Note that some people with genotype 2 or 3 may still require
CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peg interferon mono-therapy if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
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complementary medicine biopsy to determine whether they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring. For further information on this issue, please speak to your treatment specialist or phone the Hepatitis Helpline. Alternative access
People wanting to access interferonbased therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline. NSW treatment centres
Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre. In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).
Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see ED24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see ED45, page 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side effects? • Are they a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?
Hep Review
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 64) for more information and the contact details of relevant professional associations. • Hepatitis NSW. To access any of the above mentioned articles, please phone the Hepatitis Helpline.
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support and information services Hepatitis Helpline
For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers). Prisons Hepatitis Helpline
A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition
Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners
It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services
People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). Family and relationship counselling
If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Family Drug Support
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FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics
Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres
Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities
The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www. multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes some information resources in various languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www. ashm.org.au Legal advice
The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au
Hep Connect peer support program
support and information services Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW).
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.
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
Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466.
AHCS online hep C support forum
Northern Rivers liver clinic support group
Australian Hepatitis C Support - an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au
An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539.
Central Coast support groups
Nepean hep C support group
Port Macquarie hep C support group
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.
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.
Gosford: 6pm-7.30pm on the 3rd Thursday of each month at the Health Services Building, Gosford Hospital. Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy.
A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am-11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.
Wollongong hep C support group
Coffs Coast hep C support group
A peer support group for people living with or receiving treatment for hep C. Meets every 3rd Monday, 5-7pm at the Coffs Harbour Community Centre. For info, phone Janet Urquhart, Social Worker, Coffs Harbour Health Campus on 6656 7846. 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
Hep Review
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December 2011
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noticeboard
acknowledgements
Upcoming events
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Lia Purnomo Rhea Shortus Andrew Smith
Silence and Articulation: 12th Social Research Conference on HIV, Hepatitis C and Related Diseases. 12-13 April, 2012. National Centre in HIV Social Research, UNSW. http://tinyurl. com/6myoetw
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 Sophia Lema, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak
Complaints If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2
S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Gerard Newham Adrian Rigg Cindy Tucker
Or see right for our phone number and postal address.
First dog on the moon comic: Andrew Marlton Contact Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au text/mobile 0404 440 103 post Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney
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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for Hep Review and Transmission Magazine. • proofreading for Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker. Want to find out more? Please phone the Hepatitis Helpline for more information (see right).
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Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are funded by NSW Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to 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 graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www. flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.
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For NSW health care workers One of our services is the NSW Hepatitis Helpline, an information and support phone line whose staff are able to refer callers to a range of services and health care workers in their local area (within NSW only). If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular hepatitis information. Hep Review, the most widely-read hepatitis magazine in NSW, targets both people affected by hepatitis C and health care workers, is provided free to all members of Hepatitis NSW. If your service has clients or patients who may be interested in Hep Review magazine please indicate the number of extra copies you would like to receive.
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