Hep Review Edition 76
Autumn
March 2012 py o c e e ke r a F t se a e Pl
Putting the brakes on hep C Down from the mountain: the Clinic Etta James 1938-2012 Hep C is biotech’s Daytona 500 Hep chef: Honey harrisa glazed eggplant Hep Review Edition 76 March 2012 1
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Putting the brakes o
Needle and Syringe Programs – they’re well known to people who use drugs and the health workers who work wit general community knows little or nothing about them. What are they, how do they work and why are they importa Peter Lavelle visited a Needle and Syringe Program in the outer western suburbs of Sydney to find out.
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eedle and syringe programs (NSPs), first introduced in Australia in 1986, have become one of Australia’s great public health success stories. They are a crucial weapon in the fight against transmission of blood-borne viruses (known as BBVs). Hep C is a blood-borne virus and transmitted in Australia mostly among people who use previously used and contaminated injecting equipment to inject drugs. If instead, they were able to use sterile or clean injecting equipment, BBVs would spread less easily. Prior to the mid 1980s, new syringes and needles were difficult or impossible to obtain, and the widespread sharing of contaminated equipment was a major factor in an explosion of cases of hep C. Today, transmission of BBVs still takes place, but thanks to NSPs, rates of new infections have plummeted. In cities that have them, NSPs reduce HIV by 18% annually, compared to an annual 8% increase in HIV in cities that don’t have NSPs, according to a Department of Health and Ageing study conducted in 2009*. This results in huge long term cost savings for our Australian health budget. But what exactly is a NSP? It refers to a range of different types of health services that provide their clients – people who use drugs – with new, sterile syringes and needles; often with swabs and sterile water, free or at minimal cost. Some NSPs also provide healthcare services. Some NSPs are set up with this as their primary function – so called “primary NSPs”. Others operate as “secondary NSPs”, operating out of existing organisations like pharmacies, community health centres and public hospitals. Some NSPs rely on clients coming to them, but other NSPs go out directly to people who use drugs – operating via mobile outreach services travelling in vans or on foot to distribute new
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needles and syringes to clients in areas where they live. They may pre-arrange delivery with these clients, catering to people who lack transport or who can’t leave their homes. NSPs may also set up and maintain vending machines and delivery chutes in public areas that, for a few dollars or for free, will dispense needles and syringes. This enables 24 hour access to sterile injecting equipment and targets people who can’t make it to NSPs during business hours. One of the longest running, most popular and best known primary NSPs is South Court Primary Care Centre. It’s situated in a demountable building in the grounds of Nepean Hospital in Kingswood in Sydney’s outer western suburbs – a short walk from Kingswood station. South Court has been located on the Nepean Hospital site since 2003. Julie Page is the Clinical Nurse Specialist and team leader at South Court. She’s been working in BBV prevention since 1998, initially in a mobile outreach service operating in the St Marys area: the South Court’s forerunner. At South Court she manages a small but dedicated team of nursing staff, social worker, health education officers and administration staff who keep the centre running. Open during business hours, Monday-to-Friday (closing later on Thursday and Friday, at 8pm), the Centre provides free, new, sterile needles and syringes to people from the surrounding suburbs of Mt Druitt, Penrith and St Marys. South Court also operates and maintains a network of needle/syringe vending machines and dispensing chutes in the local area, at Mt Druitt and Katoomba hospitals and other locations. It also operates outreach programs, delivering needle and syringe packs by van and on foot to areas from St Marys and Penrith, all the way to Richmond, Windsor and across the Blue Mountains as far as Lithgow and Portland.
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South Court is known as an “enhanced service NSP”. Apart from its core function of supplying sterile needles and syringes, it offers clients a range of health and counselling services that, in many cases, they would have trouble accessing elsewhere. At South Court, drug users can access free vaccinations for heps A and B, pregnancy tests, PAP smears and crisis counselling services. The Centre also runs a sexual health clinic one day a week, staffed by sexual health specialists from Nepean Hospital. In addition, clients with ulcers and other wounds caused by intravenous injections – many of them serious and long term – can have those wounds regularly cleaned and dressed at South Court. Serious medical problems and complications are referred to Nepean Hospital. Centre staff also refer clients with BBVs such as hep C to Nepean’s treatment programs and clinics, and to drug and alcohol treatment services where appropriate. “We tend to get the difficult clients who other health services reject or can’t help – such as people with a history of violence, or people with no fixed address that community nurses can’t get to,” says Page. However, these additional roles are secondary to the Centre’s main function of getting sterile injecting equipment to drug users. “Our role isn’t necessarily to treat people for their drug problems, but to keep them healthy until they decide to do something themselves about their problems,” she says.
But the previously mentioned 2009 report*, calculated that every dollar invested in NSPs saves the health system four dollars in direct medical and hospital costs. Hep Hep Review Review Edition Edition76 76 March March2012 2012
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Image by ¡kuba!, via Flickr.com
Do NSPs like South Court – which usually sees over 30 clients a day – actually make a difference? It’s hard to measure. There are not many studies that show what direct impact an NSP has in a particular area.
feature Another barrier is the reluctance of certain demographic groups of people to use NSPs. “Young people for example, who have recently started using drugs often don’t want to be seen attending an NSP and generally prefer to go to a chemist instead,” says Page. Women of all ages (but especially young women), sex workers, people who use steroids and people from indigenous background are other groups of people who tend to shy away from using NSP services. “Our challenge is to find more effective ways of reaching these groups,” she says. Overcoming resistance in the community is another issue. Most residents, businesses, hospitals, community centres and councils are supportive of NSPs; but not all. Some are sympathetic in principle, but don’t want NSPs “in their backyard”. Accepting the need for NSPs means accepting the existence of a population of people who inject drugs, which some sectors of the community are unwilling to acknowledge. Image by DavidDennisPhotos.com, via Flickr.com Name or image may be changed to protect client identity.
Australia invested $243 million in NSPs between 2000 and 2009, which prevented an estimated 32,050 cases of HIV and 96,667 cases of hep C among injecting drug users. For the investment of $243 million, the savings to the health system in avoided treatment costs are estimated to be around $1.28 billion. Yet studies show there is scope to reduce BBV transmission rates further, particularly in the case of hep C.
South Court staff spend much of their time reassuring groups in the community that NSPs benefit communities and make them safer, reducing the likelihood of the danger of residents accidentally acquiring a BBV from discarded syringes, for example. “Whenever we introduce a new service like a dispensing chute, we do letter drops, we run information sessions for local businesses, we attend local council safety committee meetings, and we liaise closely with local hospitals and community health centres,” says Page.
“Ideally we’d like to increase distribution of sterile needles and syringes in our area over the next five years,” says Page.
All-in-all, NSPs are a challenging area to work in, providing so much benefit to people and the community – yet often misunderstood and invisible.
There are barriers to overcome before this goal can be reached. “One is the difficulty getting the message across to the general community about the availability of NSP services,” she says.
• Peter Lavelle is a freelance health writer who regularly contributes to Hep Review magazine: p.lavelle@optusnet.com.au
Most commercial media won’t carry advertising and promotional messages about NSPs, because of what they say are listener and viewer complaints. Some media, such as talkback radio shock jocks, are openly hostile to NSPs. That leaves these services dependent on word of mouth or on niche advertising on public health websites or smaller publications such as those aimed at sex workers and people who use drugs. 4
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Many thanks to the staff at South Court Primary Care Centre. The centre is located in the South Wing, Court Building, Nepean Hospital, Derby St, Kingswood. *Return on Investment II: Evaluating the costeffectiveness of needle and syringe programs in Australia, Commonwealth Department Of Health And Ageing, 2009.
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Image by Franco Folini, via Flickr.com Name or image may be changed to protect client identity.
Image provided by Ian’s workmates.
A client’s perspective
A worker’s perspective
“Karen”, aged 36, a former sex worker and drug user, has been coming to South Court since it opened its doors in 2003. She comes to South Court three times a week to have her dressings changed – she has chronic leg ulcers caused by injecting methadone into the veins in her groin. She explains that methadone is difficult to inject and users need special winged infusion kits (butterfly kits) to safely inject it, but since 1999, NSPs in NSW have not been able to provide them, so users either get them from a chemist and reuse them, or inject methadone into their groin veins, which causes chronic leg ulcers. She also uses the Centre’s counselling services. “I don’t know what I’d do if this place wasn’t here,” she says.
Ian Bridges-Webb (above), a social worker and counsellor, works three days a week at South Court. He trained as a counsellor and has ten years experience working in mental health. Mostly he see clients in crisis, though he does have some clients who come in regularly for long term counselling. He helps clients work through a range of problem, such as housing and legal issues, child protection and family problems, and financial problems (e.g. inability to pay a power bill) and helps arrange referral to drug and alcohol treatment programs. “Clients often prefer to come to us for help because they see us as more sympathetic to their drug problems than other government agencies,” he says. Hep Review
Edition 76
March 2012
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editor’s intro
a keyhole to our work
hat can I say? Another year for our Hep Review magazine and another year for big hep developments in NSW.
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Our work in the field of diet and nutrition
We’ll soon be finalising our current Hep Review evaluation. I’m sure it will lead to improvements to the magazine – in what it contains, the way it looks and the way that people read it. We’ll carry an update on the evaluation in our June edition.
From our early days, Hepatitis NSW has networked with key clinicians and healthcare workers; dietitians have certainly been one of these groups. In the late 1990s we invited dietitians from Royal Prince Alfred Hospital and the Albion Street Centre to join a group and develop quality information around hep C and diet, and to counter erroneous information contained in books such as The Liver Cleansing Diet.
This year also marks some other significant developments: the evaluation of our website and the implementation of our C-Me community engagement project. Our website review aims to further improve the way we communicate with you via the internet. It’s pretty exciting coming so close after our Hep Review magazine evaluation as there is interesting crossover. For example, the magazine review will probably suggest we develop a mobile phone app that allows people to read this magazine more easily. The website review will probably suggest we improve our interactivity, with you, the readers, being able to post online comments on most articles. C-Me will recruit a new position to the Hepatitis NSW team, overseeing and supporting a network of 15 casual workers recruited across NSW. They’ll work in their local region to get decision makers thinking about viral hepatitis and improve local services. Very exciting.
The “HepNut” group, as it was known, developed a standard message on diet, nutrition and alcohol use. The information was uploaded to the Hepatitis NSW and the Albion Street Centre websites, and formed our Hepatitis C and Food brochure. The most recent edition of the brochure can be accessed here>> http://tinyurl. com/6wdw99f Our dietary information is built on the foundation that there are no specific foods that people with hep C should totally avoid and none that they should obsess upon – the key advice is to follow a general “good-health” diet alongside a sensible exercise regime, and a responsible approach to alcohol use. This approach resulted in what we feel is sound advice for people, especially given the difficult financial circumstances facing many people with hep C.
Our winner for Edition 75’s readership survey is Laramie, who picked up a $50 gift card. Don’t forget to send in your form for this edition’s draw (see page 47).
Weblinks of the month
Your ABC has five handy web articles relating to health and weight... • Is your weight healthy? http://tinyurl.com/7m6pnan • Weight loss diets: what you need to know http://tinyurl.com/785tuqb • Diet Guide http://tinyurl.com/7tulad6 • Lose weight for the long term http://tinyurl.com/73dogun • What moves you? http://tinyurl.com/899nycm
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 ¡kubaapostophe, via flickr.com
promotions The content also informs our advice for Helpline callers and training session participants. It flows through to this quarterly magazine, where with each edition, we try to carry a general article on the benefits of achieving and maintaining a good level of health by avoiding smoking, maintaining a healthy body mass index and observing the National Guidelines for Alcohol Consumption. HepNut has also been involved in other project work, generally connected with the Albion Street Centre’s work in dietitian nurse training. A steady stream of students has enabled project work involving the review of existing resources, and the potential development of new resources. Significant reviews included focus testing of our Hepatitis C and Food brochure and Hepatitis Australia’s The Guide to Healthy Eating for People with Hepatitis C booklet. Our clinical advisors continue to emphasise the need for increased awareness and promotion for people with viral hepatitis to avoid additional forms of liver disease or liver damage associated with insulin resistance and type II (lifestyle) diabetes. They also advise us on the connection between obesity and poorer hep C treatment outcome. This informs our ongoing work with the communities of people affected by viral hepatitis (with a specific focus on hep C).
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.
• HNSW See our new Hep Chef recipe feature on page 42.
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
Edition 76
March 2012
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contents Letters
Post-treatment blues
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News
20 year celebration 10 Seeing the C message 10 Coroner calls for prison hep action 11 Push for Tassie jail needle-exchange 11 Legal action against anaesthetist 12 Australia okays boceprevir but funding approval pending 12 Boceprevir approved in Australia 13 3D hologram of liver to benefit future treatments 13 USA to bring back federal funding ban on NSP 14 Smokin’ Joe bows out to liver cancer 14 Pakistan movie industry hep C loss 15 Bee Gee battles liver cancer 15 200 Chinese villagers with hep C 16 Chimps not needed for hep C research 16 Monster hep C deals 16 Abbott combo may be a blockbuster 17 Can fish spread hep C by foot? 17 Chemotherapy can reactivate hep B 18 Hep C insider trading case 18 US hep C deaths surpass HIV 19 OraShure sells hep C test for wider use 19 iPhone app for hep C treatment 20 New hep C app for Androids 20 Features
Putting the brakes on hep C Herge and me Obituary – Etta James 1938-2012 Hep C is biotech’s Daytona 500 Down from the mountain: the Clinic Hep chef – Honey harissa glazed eggplant Obituary – Laura Kennedy
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Opinion
A small discussion about drugs
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My story
Flo’s story: nurturing myself Vanessa’s story: dealing with stigma Shayne’s story: regretting that tattoo
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Promotions
The most precious gift ASHM workforce development program CHI study ATAHC II acute hep C study
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St Vincent’s viral hepatitis clinic 11 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 Uni of Adelaide hep C phycological support 20 Global Battle Of the Bands 21 Multicultural hep C info and support 49 Factsheet promo – Treatment response 51 Hep C bookmarks 54 Hepatitis NSW website 55 Transmission Magazine 55 HepConnect peer support service 55 Do you want to get healthy? 56 Bathurst region’s new hepatitis clinic 56 Research updates
Hep C link to heart disease 58 Smallpox vaccine doubles liver cancer survival 58 Fatty liver explosion 59 Potential new treatment for liver cancer discovered 59 Late evening snack may help in cirrhosis 60 Cirrhosis and vitamin D 60 The Andalusian trial on heroin-assisted treatment 61 Regular features
Keyhole to our work – Diet and nutrition 6 Weblink of the month – ABC Health & Wellbeing 6 Featured resource – Healthcare worker flipchart 12 Q&A – Are there any foods that people with hep C should avoid? 21 Harm reduction poster – Drugs that damage veins 34 A prisons’ snapshot 40 Hello Hepatitis Helpline – Staying healthy in prison 52 The little book of hep C facts 53 Reader feedback form 47 Membership matters 57 A historical perspective (from August 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
promotions
CHI study 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. Joining the study involves taking an anonymous survey online. We then contact you in 3-6 months so you can tell us how things have changed for you. If you have ever been told that you have 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 www.chistudy.org.au
letters Post-treatment blues In 1992, originally under Prof Farrell at Westmead Hospital, I had my first mono-interferon treatment which was unsuccessful. In 2008 I underwent combination therapy. I was on this for 20 weeks and returned a negative result some six months latter. This therapy was a success. Since then, I have endured a malaise I feel was caused by my treatment (see ED72, page 46). I’m concerned that there are people finishing therapy but ending up with a malaise – one that appears to be a result of this treatment. From the beginning of therapy I had to resign from work. I was confined to bed for some 70% of this time. I estimate that since 2008, economically, I’ve lost around $300,000 in wages, savings, super contributions and potential superannuation benefit. There has also been considerable cost physically and with relationships. I feel fortunate my malaise now has a handle: I was recently diagnosed with Chronic Fatigue Syndrome. Many other people I speak to are still in the dark. From speaking to a number of clinicians from the treatment clinics, I know this malaise is out there. I thought it important to bring my concerns to people’s attention as I see a lack in this area of research. I am in my early 50s, did treatment, and even with it succeeding, I will become a drain on our social security system in later life. I hope that my experience and pushing will help further promote research in this area. • Chris, NSW Professor Greg Dore is one of our clinical advisors. He reports that a small proportion of people have ongoing symptoms and/ or side effects after clearing hep C through combination treatment. He said it is often difficult to tease out what are symptoms from other health conditions and what are direct side effects that are ongoing. He suggested some post-treatment illness is probably interferon-related reaction and highlighted that everyone involved in hep C treatment is looking forward to when highly effective interferon-free regimens are available. Hep Review
Edition 76
March 2012
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Image courtesy of Google Images
news
20 year celebration New South Wales – This point in time marks 20 years of operation for Hepatitis NSW. On 1 December 2011, Hepatitis NSW kicked off a year of 20th anniversary celebrations with an event at the Australian Museum – which included a launch of our four-year strategic plan: 20112015. The NSW Minister for Health and Medical Research, the Hon Jillian Skinner was the guest of honour at this event. She praised the invaluable work of Hepatitis NSW over the last 20 years, particularly in the areas of information, support, referral, education, workforce development and advocacy for people affected by hep C in NSW.
Cutting the cake in the Australian Museum. NSW Minister for Health, the Hon Jillian Skinner, and Hepatitis NSW Chief Executive Officer, Stuart Loveday, help celebrate Hepatitis NSW’s twenty year anniversary.
Launching Hepatitis NSW’s four-year advocacy agenda, Our 20 Asks, Stuart Loveday, Chief Executive Officer, Hepatitis NSW, outlined the way forward for the organisation. • Abridged from HARP News, Issue 24.
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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Coroner calls for prison hep action Queensland – Prisons must overhaul their approach to hepatitis infections, Queensland’s coroner has recommended, following the death in custody of an Aboriginal teenager. Sheldon Currie, 18, was found semi-conscious on the floor of his cell at Brisbane’s Arthur Gorrie Correctional Centre on 16 February 2010. He was transferred to the nearby Princess Alexandra Hospital but four days later died from acute liver failure caused by hep B and C infections. Delivering his findings on the death, coroner Michael Barnes found the prisoner had tested positive for the diseases in prison but medical staff had elected not to treat him with expensive antivirals because, as a remand prisoner, he would be less likely to complete the treatment. “I am concerned there appears to be no process in place to ensure prisoners who are found to be positive for hepatitis are systematically assessed for suitability for antiviral treatment,” he said. Mr Barnes said authorities should take “full advantage” of the stability provided by prison life to help address chronic health problems and addiction. • Abridged from theaustralian.com.au (4 Nov 2011) http://tinyurl.com/72nmzj9
news Push for Tassie jail needle-exchange Tasmania – Risdon Prison needs a needle exchange program to reduce hepatitis infections, a conference in Hobart has been told. University of Tasmania Research Fellow Barbara De Graaff told the Australasian Professional Society on Alcohol and Other Drugs Conference this month that prisoners were at risk of contracting hepatitis by sharing dirty needles. Ms De Graaff said a damning report into the prison, tabled by former federal police commissioner Mick Palmer, should be used as a catalyst to consider a needle exchange program. Acting chief executive of Statewide and Mental Health Services Nick Goddard said prison could represent an opportunity to intervene and provide treatment that would result in better health outcomes for individuals and the prison community as a whole. “Correctional Primary Health Services undertake a range of intensive primary care programs in the prison health system, and this includes a comprehensive disease screening process,” he said. “In fact, Tasmanian prisons have one of the best education, diagnosis and treatment programs for hepatitis C in Australia.” • Abridged from themercury.com.au (28 Nov 2011) http://tinyurl.com/7wurx2e
St Vincent’s viral hepatitis clinic Image courtesy of Google Images
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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March 2012
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news Legal action against anaesthetist Victoria – A woman has launched legal action against Dr James Latham Peters, an anaesthetist accused of infecting patients with hep C. The woman is believed to be the first person to launch civil action in the case. Slater & Gordon is preparing a class action on behalf of about 50 people against Dr Peters. The woman is also taking action against the Croydon Hospital, which trades as the Croydon Day Surgery, surgery owner Mark Schulberg and the Medical Board of Australia. The Medical Board of Australia said it is yet to be served: “If this happens, the board will carefully review the claims made and decide on an appropriate course of action.” Dr Peters, 62, is facing 162 charges, including 54 counts each of conduct endangering life, recklessly causing injury and negligence causing serious injury in 2008 and 2009. • Abridged from heraldsun.com.au (12 Dec 2011) http://tinyurl.com/8yyfpzx Also see ED74, p9; ED72, p15; ED70, p16; ED69, p12.
Australia okays boceprevir but funding approval pending Australia – Victrelis (boceprevir) has been approved by the Therapeutic Goods Administration for general marketing in Australia for the treatment of chronic hep C genotype 1 infection. Approved on 9 January 2012, Victrelis is approved for use in a combination regimen with peg interferon alpha and ribavirin, in adult patients (18 years and older) with compensated liver disease who are previously untreated or who have failed previous therapy. The Pharmaceutical Benefits Advisory Committee rejected a 2011submission on listing Victrelis as a S100 Medicare subsidised drug. The treatment was knocked back on the basis of uncertain cost effectiveness. • Abridged from health.gov.au (16 Jan 2012) http://tinyurl.com/6vshzhf and http://tinyurl. com/89jkwzq The Pharmaceutical Benefits Advisory Committee will consider listing Victrelis at its March 2012 meeting. Then Australian government needs to approve funding so people with genotype 1 can access the new drug. We will call on our members and readers to help advocate for the funding approval.
Featured resource:
NSW healthcare worker hep C flipchart Hang this quick reference resource on your wall for easy access to hep C information and referrals. 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/7kctp25
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news
Boceprevir approved in Australia
Put off by the long treatment time and low success rates of current therapy, thousands of people have been “warehoused” awaiting the new class of HCV-protease inhibitors. The first of the class, boceprevir (Victrelis), has now been approved by the Therapeutic Goods Administration, and others in the pipeline. Professor Robert Batey, clinical director of the viral hepatitis program with the Australasian Society for HIV Medicine, said “I’ve got patients who have been sitting on the their hands for three years.” He said patients with the more common genotype 1 infection stood to gain the most from the new agents, having historically experienced poorer responses to the therapy than those with genotype 2 or 3. “There’s been a significant shift in approach to genotype 1 patients. We’ve been saying, unless you’ve got a potentially life-threatening problem in the next year or so, it’s worth our while waiting for the additional drug”. HCV-protease inhibitors prevent the replication and reproduction of the hepatitis C virus, but must be given alongside standard peginterferonribavirin therapy to minimise the risk of viral resistance. Professor Batey said patients could now be told the cure rate was up to 80% for all genotypes and they could undergo a shortened course of treatment. He also noted the drug could add thousands to the cost of standard therapy, which already stood at $20,000 for the full course. The Pharmaceutical Benefits Advisory Committee last year rejected listing boceprevir on the PBS because of uncertain cost effectiveness. It is due to review the matter again in March.
Image courtesy of Google Images
Australia – The wait for a more effective treatment is finally over for hep C, with the approval of the first new therapy in more than a decade by the national watchdog for drugs and devices.
3D hologram of liver to benefit future treaments UK – Holoxica, an Edinburgh-based 3D holographic imaging company, has furthered the boundaries of biomedical imaging by creating the world’s first 3D, full colour hologram of a human liver, paving the way for a breakthrough in the way surgeons plan liver operations to remove tumours. Until now, medical science has had to rely on two-dimensional screens to view threedimensional information from CT, MRI and ultrasound scanning techniques. It means that specialists can now find new ways of visualising the complete structure of a human liver in greater detail and to better understand tumour behaviour within the liver than would be the case from 2D images they currently use. Javid Khan, managing director of Holoxica, said that holographic technology can now be used to great effect in the field of biomedical science. One scenario could be cancer treatment planning in radiation therapy. “It’s important that the radiation beam is concentrated directly on the tumour and not on surrounding tissues. A true 3D imaging hologram can help create a radiation plan that does just that,” he said. • Abridged from scientistlive.com (15 Nov 2011) http://tinyurl.com/7w4pkrh
• Abridged from australiandoctor.com.au (1 Feb 2012) http://tinyurl.com/8ygthar Hep Review
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March 2012
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news USA to bring back Federal funding ban on NSP USA – As part of the 2012 US spending package, Congress is restoring a ban on using federal funding for syringe exchange programs. The ban, enacted in the 1980s, was repealed in 2009. Advocates warn that restoring the ban will result in thousands of Americans contracting HIV, hep C or other infectious diseases next year alone. “The federal syringe funding ban was costly in both human and fiscal terms – it is outrageous that Congress is restoring it given how overwhelming and clear the science is in support of making sterile syringes widely available,” said Bill Piper, of the Drug Policy Alliance. House Republicans also succeeded in imposing a ban on use of State Department funds for syringe access in international programs. In large parts of the world the HIV/AIDS epidemic is being driven by injecting drug use. The international syringe funding ban will mean the global HIV/AIDS epidemic will continue to grow. The Centers for Disease Control and Prevention (CDC), American Medical Association, National Academy of Sciences, American Public Health Association, and numerous other scientific bodies have found that syringe exchange programs are highly effective at preventing the spread of HIV/ AIDS and other infectious diseases. Increasing the availability of sterile syringes through exchange programs, pharmacies and other outlets also helps injecting drug users obtain drug education and treatment. Eight federal reports have found that increasing access to sterile syringes saves lives without increasing drug use. “We may have lost this battle, but we have just begun to fight,” said Piper. “The Republicans who insisted on restoring the ban, and the Democrats who didn’t fight hard enough to oppose it, will be responsible for thousands of Americans contracting HIV/AIDS or hep C. We will make sure Americans know which members of Congress care about their health and well-being and which do not.” • Abridged from stopthedrugwar.org (17 Dec 2011) http://tinyurl.com/7csogb2
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Smokin’ Joe bows out to liver cancer New Zealand – The death of legendary world heavyweight boxer Joe Frazier from liver cancer is a sad reminder of the seriousness of the disease. The most common type of liver cancer is known as hepatocellular cancer (HCC), which originates from hepatocytes. This is what Frazier died of. Liver cancer is very aggressive with 98% of those diagnosed with it dying within five years. It is also a common form of cancer, the third to fifth most common form of the disease in the world, depending on where you live. In New Zealand, the average age of a liver cancer patient is between 60 and 80. In developing countries, people with the disease are in their 30s and 40s. Men are three times more likely to develop liver cancer than women. The New Zealand government began to offer hep B vaccinations to children in the 1980s and hopefully this will result in a decrease in HCC during the next 10 to 20 years. This is especially important in populations such as Maori, who have a higher prevalence of hep B. The key to prevention is to try to reduce the incidence of hep B, in particular, as well as hep C, and to make people aware of the dangers of alcohol. • Abridged from stuff.co.nz (16 Nov 2011) http://tinyurl.com/84mkn3k Joe was diagnosed in early October, 2011, and died four weeks later.
CORRECTION In the previous edition we carried an article “WA $7.5 million hep C research deal”. In the article we suggested the company involved Cocrystal Discovery was based in Western Australia. In fact, Cocrystal is based in Washington state, USA.
Pakistan movie industry hep C loss Pakistan – Noted film star Tariq Shah, died in Lahore in December 2011 and was laid to rest there. Born in Mardan city in 1952, Tariq Shah served the industry for 35 years and starred in over 800 Urdu, Pashto and Punjabi movies. Tariq Shah made a place for himself in the film industry despite the fact heavy weights like Badar Munir, Asif Khan of the Pashto film and Waheed Murad, Nadeem and Muhammad Ali were ruling the Urdu and Punjabi film industry at that time. He was decorated with many regional and national awards like Nigar, Bolan, etc. Tariq Shah’s stage shows in foreign countries also earned him fame. The noted artiste had been suffering from hep C for the last few months, which proved fatal. The culture director Khyber Pakhtunkhwa had arranged a charity show in November last year to raise funds for the treatment of the ailing film star, but the federal government didn’t take notice of the appeals made for help in his treatment. He left behind a widow, two sons and three daughters to mourn his death. • Abridged from thenews.com.pk (12 Dec 2011) http://tinyurl.com/7g7x3el
news Bee Gee battles liver cancer UK – The clean-living singer, Robin Gibb, 61, was diagnosed with liver cancer several months ago and has been forced to cancel a number of high-profile appearances. This week he was taken to hospital by ambulance after a 999 call was made from his Thame mansion. Robin’s mother Barbara, 91, and elder brother Barry have flown over from America to be with the star, who was allowed home after spending five hours at the hospital. A close family friend last night said his condition was “not good” and wife Dwina had not left his sickbed. But Robin had been boosted by the support from his family, friends and fans from around the world. Dwina has been enquiring into alternative treatments and arranged for him to visit a London clinic in a ddition to hospital treatment and tests and visits from a leading doctor. A druid priestess, Dwina also said she is trying to persuade him to visit a N ative American medicine man. “This incredible Indian tribe introduced Robin and I to something called Spider Medicine that apparently contains properties that can help you get well from certain untreatable illnesses,” she said. • Abridged from mirror.co.uk (20 Nov 2011) http://tinyurl.com/85l9svq
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 200 Chinese Chimps not needed villagers with hep C for hep C research China – More than 200 villagers have been diagnosed with hep C in East and Central China, with the reuse of old needles by a rural clinic suspected as the cause. In November 2011, 105 people from the Dancheng township of Woyang county in the eastern province of Anhui tested positive for the disease, a spokesman for the Woyang Health Bureau said. Earlier, 104 people in the neighbouring Maqiao township of Yongcheng city in central province of Henan had also tested positive for the virus. Investigators are focusing on a doctor at a privately-run village clinic in Maqiao. Wu Wenyi, 60, is suspected of causing the infection by reusing old needles. Local residents said Wu seldom changed needles, and is known as the “miracle doctor” for his ability to alleviate patients’ fever and diarrhoea through injections and a few tablets. • Abridged from sina.com (3 Dec 2011) http:// tinyurl.com/7n3rvgp
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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USA – After two decades of chimpanzee use in medical research, only one disease remained to justify experiments that in humans would be considered unconscionable: hep C, which kills 340,000 people every year and infects no animal except chimps and humans. Hep C thus became the main battleground for debates over the ethics and morality of invasive chimp testing, which is permitted nowhere but Gabon and the United States. At least scientifically, that battle now appears settled. In May 2011, the FDA approved two new hep C drugs, both far superior to the only existing treatment and both developed without chimp testing. The Institute of Medicine has formally declared chimps unnecessary for hep C drug development, paving the way to treat the closest living relative to humans with humanity. • Abridged from wired.com (27 Dec 2011) http://tinyurl.com/72tczvy
Monster hep C deals USA – The torrid pace of hep C deal-making continues with Bristol-Myers Squibb announcing that it will acquire Inhibitex for $2.5 billion. For all that cash, Bristol gains control of Inhibitex’s INX-189, a pill in phase II studies which has the potential to become a component in the first interferon-free therapies against hep C. For the same reason, Gilead Sciences announced plans to acquire Pharmasset for $11 billion. Pharmasset and Inhibitex were the two topperforming stocks in the biopharmaceutical sector in 2011. Hep C stocks have become red hot on takeover speculation, and investors will surely now focus next on Idenix Pharmaceuticals and Achillion Pharmaceuticals, both still independent for now. • Abridged from thestreet.com (7 Jan 2012) http://tinyurl.com/78qlrvc
Abbott combo may be a blockbuster USA – Abbott Laboratories said that it could have a shorter duration combination therapy for hep C on the market in 2015 with annual sales potential of about $2 billion. Significantly, its combination therapy does not include tough-to-tolerate interferon, which causes flu-like symptoms that lead many patients with the serious liver disease to stop or delay treatment. Abbott said that in very small mid-stage trials, a combination of two of its experimental medicines and two other drugs were showing the potential for cure rates as high as 90% with as little as 12 weeks of therapy. The shortest duration current patients can hope for is 24 weeks. Abbott discussed its hep C trials and other experimental medicines at a meeting with investors and analysts in New York just two days after announcing it would spin off its prescription drugs business into a separate company. “While early, these results are unprecedented,” said Richard Gonzalez, who will head the new company.
news Can fish spread HCV by foot? UK – Trendy fish pedicure foor spas could spread hep C, officials warned. The UK Health Protection Agency said risks from the footnibbling treatment are low but could not be completely excluded. Infections and bacteria may be passed on by the tiny garra rufa fish themselves or through water used by a previous client and left unchanged. Blood-borne viruses like hepatitis could be transmitted if infected clients bleed in spa water that is used again. Some parts of the US and Canada have banned fish pedicures. Conventional sterilisation of equipment cannot take place because it would harm the fish. Christina Wright, boss of fish spa chain Appyfeet, accused officials of scare-mongering. “We worked for 18 months with the Health and Safety Executive and local authorities making sure our spas were of the highest standard,” she said. • Abridged from asiaone.com (20 Oct 2011) http://tinyurl.com/7rfuwyk
• Abridged from reuters.com(21 Oct 2011) http://tinyurl.com/7k2ja73
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 Chemotherapy can reactivate hep B Spain – Many people with chronic hep B have few or no symptoms, and do not realise that they have the disease. The virus can live for years in the liver until it is reactivated by conditions that suppress the immune system. Chemotherapy for cancer treatment is one of the most common causes of reactivation, according to an article by Dr Maria Luisa Manzano-Alonso and colleagues in Spain. “All types of drugs used in chemotherapy have been involved in hep B reactivation,” she reported. Manzano-Alonso explained that hep B reactivation has a wide range of outcomes. As in the original infections, some people have no symptoms. Others develop life-threatening liver failure. Hep B blood tests are recommended for all patients who receive chemotherapy. Prophylactic therapy with lamivudine is recommended for those who test positive for the HBV surface antigen, HBsAg. Once reactivation occurs, it can still be treated, but the results are not as good. • Abridged from empowher.com (12 Oct 2011) http://tinyurl.com/7q9bb3y
Hep C insider trading case USA – Hedge fund manager Joseph Skowron pleaded guilty in August 2011 to conspiring to commit securities fraud and obstructing a Securities and Exchange Commission investigation probe for trading on inside information about Human Genome Science and then lying to investigators. Skowron obtained non-public information about hep C drug trials from Dr Yves Benhamou, an expert in hepatitis drugs and a former adviser for Human Genome Sciences. The tips enabled FrontPoint, Skowron’s former employer, to avoid more than $30 million in losses, prosecutors said. Benhamou has also pleaded guilty. “I’m trying to understand how he could risk so much,” wrote his wife, Cheryl Skowron, in a letter to Judge Denise Cote who is presiding over the case. “He says he had no idea prison was a possibility otherwise he never would’ve done it. I believe him and yet here we are.” Prosecutors said that Skowron corrupted Benhamou for illegal tips, then lied to the SEC about his actions and later persuaded Benhamou to also lie to regulators. He earned more than $32 million while at FrontPoint, prosecutors said. • Abridged from businessweek.com (15 Nov 2011) http://tinyurl.com/7gnwhgl
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
US hep C deaths surpass HIV
news OraSure sells hep C test for wider use
USA – Hep C is associated with more deaths than HIV according to sobering new data presented by the Centers for Disease Control.
USA – OraSure Technologies received approval to sell its test for the hep C virus to a wider range of clinics and doctors’ offices in the US.
The discouraging findings, presented by Dr Scott Holmberg come from data involving 21.8 million deaths reported to the National Center for Health Statistics between 1999 and 2007.
The company said the FDA expanded approval for the OraQuick HCV test, allowing more than 180,000 facilities to use it. The FDA approved the test in February 2011, but initially limited its use to clinically trained staff.
Encouragingly, death rates associated with hep B remained relatively flat between 1999 and 2007. Hep C deaths have increased sharply, Holmberg’s team reported. With respect to crude numbers, roughly 12,700 HIV-related deaths were reported in 2007 whereas more than 15,000 hep C related deaths were reported that year. Most viral hepatitis deaths occurred in people in the prime of their lives. About 59% of people who died of complications related to hep B were between the ages of 45 and 64. The impact of hep C was even more substantial – roughly 73% of deaths were in baby boomers. Not surprisingly, death rates were highest among certain populations. For example, people co with both HBV and hep C faced a 30-fold increase in the risk of death from liver disease or related complications. Heavy alcohol intake was associated with a four-fold increase in the risk of death. • Abridged from aidsmeds.com (10 Nov 2011) http://tinyurl.com/6n3zukx
The test can be done via blood samples taken from a vein or with a finger-stick test, which draws a tiny amount of blood by pricking the finger. Patients can get a diagnosis in 20 minutes. “New therapies are now available that can effectively treat a high percentage of people with hep C, making expanded and accessible testing a critical step in fighting this epidemic,” Dr Willis Maddrey, president of the Chronic Liver Disease Foundation said in a statement provided by OraSure. Vertex Pharmaceuticals and Merck both received approval to market new hep C drugs earlier this year. Both companies are conducting campaigns to raise awareness of the disease. An increase in hep C testing should help boost sales of the new medicines. Merck will help promote the OraQuick HCV test in doctors’ offices as part of a collaboration agreement, OraSure said. • Abridged from reuters.com (29 Nov 2011) http://tinyurl.com/72x6dau
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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news iPhone app for hep C treatment
New hep C app for Androids
UK – The University of Liverpool has launched an iPhone app, HEP i-chart, that provides hep C patients with quick and easy access to the latest information about drug interactions.
India – The Android experience has just become better with the new Android applications developed by India-based, Niche Tech Computer Solutions.
HEP i-chart is based on a website developed at the University which provides a comprehensive online guide to the interactions between antihepatitis drugs and other drugs.
The new applications are built with the purpose of enhancing the functionality of Android smart phones and improving the end user experience. The three applications recently developed by Niche Tech include; MyPocketSearch, HCV-edge and Cinemark.
It is a tool that provides hep C patients and healthcare professionals with immediate access to up-to-date information on potential drug interactions between hep C drugs and other drugs that may be prescribed as well as over-thecounter, recreational or herbal medications.
HCV-Edge is an Android application developed with Android tools and remote access web service that is used in management of hep C.
“This new app, HEP i-chart, is a timely and much-needed resource,” said Professor Graham Foster, President of the British Association for the Study of the Liver.
The application monitors treatments and maintains notifications and schedules regarding hep C. This helps people living with hep C cope better. The application is compatible with all Android devices in the market.
• Abridged from finchannel.com (26 Nov 2011) http://tinyurl.com/7aonje7
• Abridged from sbwire.com (27 Dec 2011) http://tinyurl.com/77f9ufh
All Australians with hepatitis C are invited to participate in an online survey to: • Contribute to knowledge about psychological support • Improve treatment and support options • Have your voice heard
Visit https://www.surveymonkey.com/s/hepcsupport Exploring the desire for psychological support in people living with chronic hepatitis C is a research study being conducted by the School of Psychology, University of Adelaide, and the Department of Gastroenterology and Hepatology, Royal Adelaide Hospital. The survey takes 10 to 20 minutes to complete. This study has been approved by the Human Research Ethics Committee of the Royal Adelaide Hospital. Participant information is on the first page of survey. Image adapted from CC Craig Taylor www.flickr.com/photos/49333396@N06/4859646726/
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feature
Q&A: Are there any
foods that people with hep C should avoid?
Aside from alcohol, no, there aren’t any foods that people with hep C should avoid. With most foods it’s all about moderation (see http://tinyurl. com/76dbznu). A special danger for people with any type of liver disease, though, is the bacteria Vibrio vulnificus. It’s not very common and can be found in raw seafood, especially raw oysters. Another special danger are aflatoxin fungi, found in mouldy peanuts. Australian-grown peanuts are considered safe and it is produce grown and processed in developing countries that should be avoided. 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 youthbased 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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Hergé and me Luke Davies - author of Candy and the recently released Interferon Psalms – had a childhood empathy for fictional teen reporter Tintin. This led to a special relationship with the Belgian artist Hergé. Four decades on, the Australian author still treasures their correspondence.
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y father remembers the moment, early in 1971. Nine years old, I casually announced that I planned to write to Tintin author Hergé and I needed help to find an address. “You predicted to me how things would play out,” my father says when I call him as I prepare to write this story. “You said you’d write back and forth and tell each other what was going on. You were relaxed and happy about it. I tried to gently pour cold water on the idea. I told you that thousands of kids probably wrote to him and that he mightn’t have time to get back to you individually. But you shrugged it off.” Dad tracked down the address for Methuen Publishers in London and away I wrote. To my father’s surprise and my own joy, a couple of months later a beautiful letter turned up. An embossed Tintin waved to me from the envelope, his faithful dog, Snowy, trotting happily alongside him. “Dear Luke,” the letter began. “It was a very kind and interesting letter you sent me and I thank you very much for writing it.” My heart leapt. Forty years later, I do not remember the casual confidence with which I had sent my father on his address-finding expedition; but I do remember the intake of breath, the sudden sense of my world expanding, when I opened that envelope. For the Tintin books were my emotional universe. To read them felt quite simply like being loved: by an entire world of possibility, my future. Even today, the power of reading one of them remains visceral: each book acts as a form of transportation, not just to the emotional landscape of this first literary love affair but to very specific memories.
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One summer morning, the family began the trek up the Pacific Highway from Sydney to Surfers Paradise, where each year we spent our Christmas holidays. The usual 12-hour journey was interrupted when my little brother, Felix, who’d had an ongoing illness since birth, became sick and wound up having to spend the night in Grafton Base Hospital. We booked into an old-fashioned pub by the Clarence River. The situation with Felix mustn’t have been great because there was about an hour at dusk when our parents left me and my older brother, Ben, on our own in the hotel room. I remember feeling: “Okay, we’re alone in an alien place and our parents aren’t here. When they come back, they’ll feed us.” I curled up on my lumpy bed with Prisoners of the Sun and dived, transported, into its noir-ish, scene-setting opening panel: “At police headquarters in Callao, Peru.” Four decades later, I remember everything about that hotel room: the stripe of the bed cover, the great cedar cupboard, the gauze curtains, the wide verandah, the alkaline breeze from the river. And with it all I remember so vividly the unassailable cosiness, the sense of being protected, being in such an utterly foreign room and yet being, with that book in my hands, fundamentally safe. Certain books in my life have seemed psychically talismanic but only Tintin books ever felt physically so. From time to time it has struck me that as a writer I’ve somehow managed to live my life as I had long ago dreamt of doing, based on the Tintin paradigm: on my toes, travelling, senses attenuated, everything just adventure and exploration, curiosity and problem solving.
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Image by ktylerconk, via Flickr.com
There’s a frame in one of the books where Tintin is sitting in his cosy apartment having a boiled egg and toast for breakfast, reading the newspaper. In European cities, when I’ve sometimes rented an apartment to work on a novel or script, I have found myself thinking, in the middle of such a breakfast, and with a conscious, overt memory of that scene: “Holy shit – I think I’ve pulled this off.” At such a moment, one is infused with gratitude: that life, for all the unfathomable strangeness of its twists and turns, can now and again integrate, without static, the joys and dreams of the deep past with the radiant present. We wrote several letters back and forth during the next few years. There was a remarkable consistency to his tone and style across the letters. “I was especially delighted by your father’s big idea of ‘The Butterfly Farm’,” he wrote. “Respect for and interest in life are always a comforting show.”
(My father and his best friend, the novelist Kenneth Cook, had started a before-its-time ecotourist attraction on the banks of the Hawkesbury River at Wilberforce and the family moved there for a year and a half.) I must have bombarded him with questions. “I am married but have no children,” he answered in one letter, “except, of course, Tintin, Captain Haddock, Professor Calculus and all the others, and that’s a family!” There were elaborate Christmas cards, too. One, a frosted-gold scene of Tintin and the others going to church in the snow, opened up into a spiral that hung from the ceiling. Others showed various characters, disguised on an Egyptian tomb mural, or as figures on a sheet of stamps, or a crowd of protesters saying “Non!” to pollution. One is even a full-page rough in progress from Tintin and the Picaros, Hergé’s final completed book, complete with a trompe l’oeil “best wishes” card attached with a fake rusty paper clip.
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feature Then it seems – to my great regret now – that with adolescence coming on, I simply stopped writing. And so did he. But every year for seven years the Christmas cards kept coming: extravagant, beautiful, playful. And what of my side of the correspondence? Surely copies of my original letters to Hergé would not still exist? I wrote, without an enormous amount of hope, to the Hergé Foundation. The archivist, Bernard Tordeur, replied. He told me there were 50,000 letters in storage in a “safe place somewhere out of Brussels” and that while they weren’t digitised, he would at some point try to see whether he could find mine. My heart leapt all over again. I experienced even my sense of growing impatience as an intense sensation of good fortune. I was to get to see the way I thought, the way I wrote, 40 years ago. Eventually, Tordeur unearthed three artefacts only. There was nothing from those first couple of years and, unfortunately, no trace of the first letter I ever wrote Hergé at nine, which I craved as a kind of Holy Grail. There’s a letter from 1973 in which I appear to be doing exactly what I told my father I’d do: chitchat. “For our holiday we went down to Sydney and went to various tourist attractions, picture theatres, ferry-rides etc,” I wrote. “Mum and I went into a bookshop to buy a Tintin book for me, which is Red Rackham’s Treasure. That now brings my collection to six of your books.” There’s one other letter from a year and a half later. “Dear Mr Hergé, I hope you are well. I’m sorry I haven’t written to you for so long. I wrote one letter to you recently, but it must have got lost in the mail, as I never heard back from you.”
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To the modern ear, in this era of chronic, overwhelming, yet-to-be-dealt-with email in-boxes, there sounds a hint of the passiveaggressive in this. But it speaks to me of my innocence: I simply assumed only one possible explanation – lost in the mail – for any downturn in our correspondence. “In 2nd form,” I wrote, “I have chosen for my two elective subjects French and Latin. Maybe I’ll soon be writing to you in French.” (Historical note: I never wrote to him in either language.) Another of Tordeur’s unearthed treasures is a school photo of me in my St Dominic’s College, Penrith, uniform – a school I only attended for a year and a term, and a photo of which I have no memory. Hergé had sent me a photo of himself, signed in gold ink, for my 11th birthday. I suppose this was the reciprocal act. “Dear Mr Hergé,” I inscribed on the back of the photo, “With great affection, from Luke Davies (aged 11) (Australia).” “You were relaxed and happy about it,” my father had said and I’m amazed, looking through this window into the past, by just how unfazed I do seem to have been by it all, how I was not in awe of this man whose work I worshipped so. “With great affection” indeed! For darker times would come when I was not at all relaxed – an era I would explore in my novel Candy: A Novel of Love and Addiction. And the fact that I still have the cards and letters is closely related to an extraordinary sequence of events that occurred much later. When I was 19 or 20, studying arts at the University of Sydney, I knew a couple of the editors of Honi Soit, the student newspaper. A young cartoonist, David Messer, was fooling
Image by djking, via Flickr.com
feature around with Tintin “mash-ups” on the back page – morphing some of the dialogue and pictures, making Tintin not just a young adventurer but seemingly an adventurer-cum-drug-addled rogue as well. At some point, I must have lent him the cards and letters – and thought no more of the loan. Extraordinary though this seems to me now, I remember only that I was heading towards the precipice over which would lie years of chaos. Jump forward seven or eight dark, demented years and life had finally collapsed into the heap it was always going to collapse into. I was discharged from the Langton Centre, a detox facility in Surry Hills, and told I had to wait three days for an available bed in the rehab program into which I’d been accepted. The catch was, you could only enter the rehab directly from the centre. They said they would make an exception for me but only if I stayed at the house of someone who was in recovery. (I knew very few such people.) Through a friend of a friend, I found a sofa I could crash on for the weekend – at the house of a woman, a few years clean, who had a 12-year-old daughter and threeyear-old son. I was three weeks off drugs for the first time in nearly a decade. Life seemed hallucinatory, raw, bewildering. Mostly what I remember is craving milk. Everything was about to change and I had absolutely no idea what that meant or what it would feel like. There were a few Tintin books in the bookshelves in the living room. “I was so into him as a kid,” I said upon seeing the books. “You know, I even wrote to the author and he sent me all these letters and cards.” My host replied: “Oh wow, you should see what we’ve got.” She took me to her daughter’s room and pulled out a filing box. And there was my Hergé trove. After the first moment of incomprehensibility, after my jaw dropped, after the flush of goosebumps – after I almost fell to my knees – I stammered: “These – these are mine. You found my letters!” She thought I was joking; why would you not? “Look.” I pointed to the envelopes: every one of them addressed to Luke Davies. “Where did you get these?” A couple of years after I’d given the packet to David Messer the cartoonist, a new Honi Soit editor had been clearing out old junk from the
newspaper offices and had come across the cards. He thought they were an interesting curio, and held on to them. As it turned out, this fellow was a friend of the woman I stayed with that fateful weekend, and at some point, when her daughter was eight or nine, he’d noticed that she liked Tintin and had given her my cards and letters as a gift. It was all so improbable, so exhilarating, the letters’ journey through the years and back full circle to me. The fact that deep in the stranger’s house, like an amulet in some fairytale, would be my long-lost letters; the fact I even noticed a stray Tintin book in a bookshelf. It is as if at that moment my old life – that innocent boy – was being given back to me in the form of a new life; and everything in between was wiped clean. (Historical fact: it wasn’t, technically speaking. Oh, the wreckage. Oh, the clean-up operation.) The author of Where the Wild Things Are, Maurice Sendak, once related the following anecdote. “A little boy sent me a charming card with a little drawing on it. I loved it. I answer all my children’s letters – sometimes very hastily – but this one I lingered over. I sent him a card and I drew a picture of a Wild Thing on it. I wrote, ‘Dear Jim: I loved your card.’ Then I got a letter back from his mother and she said: ‘Jim loved your card so much he ate it.’ That to me was one of the highest compliments I’ve ever received. He didn’t care that it was an original Maurice Sendak drawing or anything. He saw it, he loved it, he ate it.” I relate to that little boy’s ritualistic, protoreligious ingestion, his desire for total communion with the Other, for that which has given him joy. It’s a magnificent moment in obsessive fandom. But I’m very glad that by nine years old I had a more sophisticated sense of what to eat, and what to leave alone. • Luke Davies is a poet, novelist and screenwriter. His novel Candy was made into a film starring Heath Ledger in 2006. His latest book is Interferon Psalms. Abridged from smh.com.au (3 Dec 2011) http://tinyurl.com/8999z8j
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my story
Flo’s story: nurturing mys I
was a blood donor for many years until one day in 1990 when I received a letter to attend the clinic for further testing. Unfortunately, those tests proved positive for hep C. I remember reading the letter informing me I could no longer donate, thinking, “What on earth is hep C?” Little was known about the virus in those days. I was referred to a gastroenterologist who said that they were still working out what it meant for patients. I remember being told that within 20 years I would have deterioration in my health due to liver fibrosis. I worked out I must have contracted hep C from a blood transfusion I had following surgery in 1978. I decided to change my lifestyle and started using complementary therapies, vitamins and other supplements, but otherwise pretty much ignored the fact that I had the virus. People didn’t tend to talk about these things because of the fear of judgment, and in the 1990s, one did not disclose being hep C positive, except to medical or other staff if requiring a procedure. On one occasion before some surgery, I was told I would be last on the list due to my hep C status. At the time, I was a little put out but then accepted this as being something that just happened if you had the virus but I did start to think that it might be more serious than perhaps I had thought. A psychiatrist I worked with once asked me if I was angry about getting it through a transfusion. I never really felt angry about that. I was lucky in some ways not to have got HIV, and having hep C hadn’t really impacted on my life that much. I’ve worked full-time in mental health since 1966. In this work environment I have seen many people with mental illness go through hell at times. I have witnessed my clients suffer from judgmental attitudes and poor treatment. I have always been aware that I am very fortunate. It’s not hard in this line of work to find someone who is worse off. I’m good at counting my blessings. I would never disclose to my clients – that would not be professional. But years ago I saw the mother of a teenager who’d just been diagnosed with hep C and the mother was extremely
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worried about this. By this time, I had lived a healthy active life for decades, with no signs of hep C symptoms, except for a slightly abnormal liver function. So, I was able to confidently reassure her that the diagnosis was not a death sentence and that her daughter would be fine if she pursued a healthy lifestyle too, e.g. no alcohol or drugs. It’s funny, another time a client got very paranoid that I was putting on gloves to give him an injection! I couldn’t say, “If only you knew I was doing this for your benefit.” Even though I used complementary medicines, I’ve always been aware of the need to maintain contact with the liver clinic. Seven years ago I was involved in a five-year research project. This involved a full medical history, medications both prescribed and complementary, monthly blood tests and a liver biopsy at commencement and completion. The result of the biopsy at commencement was fibrosis 1, but at the completion it was fibrosis 2-3, which was a complete surprise to my gastroenterologist and me. He strongly encouraged me then to consider treatment. I reluctantly agreed to an appointment with a hep C CNC (Clinical Nurse Consultant). In the meantime, I acquired as much information as was available on treatment side-effects, research results for genotype 1 and the response rate. The more I learned, the less I wanted to do treatment. My GP described it like having the flu for a year. I have always had a busy life gardening, exercising, socialising and I just thought, “Flu for a year! I really don’t need that in my life”. Apart from anything else, I was well. The biopsy may have said the fibrosis had increased, but I still didn’t have any serious symptoms. I had suffered arthritis and hypertension, but these run in the family and are not related to hep C. However, about the same time, my brother passed away after developing secondary liver cancer, and I had a sister-in-law who had hep B and then went on to develop liver cancer also. Seeing how bad that was for them – well, there was just no way I wanted to go through that. A close friend attended that first appointment with me to discuss treatment, as we knew that due to
my story
self my negative attitude, I would not take in much of the information. It helped to have someone to discuss it with afterwards and to help with my decision making. After umming and ahhing, for three to six months, I made the decision to start. I thought to myself, “Well, I’m definitely going to have a holiday first!” So I went off to Vietnam for October and agreed to start in November. The day I was due to start, I was half an hour late for my appointment with my CNC. When I got there she said she had thought I wasn’t going to turn up. I just laughed. Once I commit to something, I stick to it. But I was still unsure about how it might affect me. I remember telling her that I planned to undertake some renovations to my house at the same time as I did treatment. She just looked at me and said, “Have you got rocks in your head?” Workwise, I sat down with my director and team leader, and told them I would like the first month of my treatment off but, beyond that, I really didn’t know how treatment was going to affect me. They were supportive about this I think, because I have worked in the team for over ten years, they knew I wouldn’t take sick leave unless I really needed it. They have always showed me respect and I showed it to them by keeping them in the loop. I planned to work full time during the remaining 44 weeks. Treatment commenced a month before my 66th birthday! The first few weeks were relatively symptom-free, except for occasional nausea,
Image by Sarah_Ackerman, via Flickr.com
indigestion and increased arthritic pain. These I chose to ignore and continued on with my walking, exercising and gardening. If anything, I experienced a bit of a high when I first started. Unfortunately then a disc in my back herniated, pinching two nerves, and I was unable to return to work for four months. My back could have gone at any time – there was no connection between this and treatment. However, it made things more difficult, especially as I had to rely on my daughter to come and cook for me. I grew up in a family of nine, and if you were sick when you were a kid, well, you just learned to look after yourself until you got better. I found it hard to be dependent even on my daughter to look after me and during this time I felt guilty taking so much time off work. So I did get a bit down. But I continued with treatment and the guilt had a positive side, as it helped me build my determination to get better. On return to full-time work, I found myself very tired at the end of a shift. I was breathless climbing stairs, walking and doing any form of exercise. I managed to continue and, surprisingly, each late night weekend shift I did was quiet with very few of the usual call-outs or emergencies. I had the sense that someone, somewhere, was looking after me! If I felt upset by anything at work it never came out at the time; I’d be more likely to just be a little bit teary afterwards. I remember taking a call about a client who had a different form of
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my story medication-induced low white blood cell count. The alarmed caller said, “This client is a code red. His neutrophils are only 1.8.” I just laughed. At the time, mine were 0.7. Working was a distraction from the side-effects. However, I didn’t listen to my body, then became sick with bronchitis and ended up with a chronic cough which didn’t clear up until the end of treatment. Looking back, I can see it was madness to go back to aqua-fitness before I had fully recovered from the bronchitis, but there is a small group of us who have been exercising together for 30 years. These friendships are important too! You’ve got to also have a life when you’re doing treatment. In hindsight, I was lucky not to have too bad a time from side effects. I certainly didn’t get a lot of the things they talk about in the hep C books. My hair got thinner, so I just kept it short. I lost a bit of weight. I think I coped better with treatment at 66 than I would have at 36 – when you are older you expect to feel a bit more tired. I have been blessed to have a caring family, good friends and an excellent treatment team. My CNC was very supportive; I got a lot from her. Even though my blood test results were looking doubtful at one stage, she kept telling me I was doing well and was always positive. I have very good work colleagues. They continued to include me in social things. They came and took me out when my back injury put me in a wheelchair. All of this helped me cope with treatment.
Five months post-treatment, I am slowly returning to my former energy, socialising at night without wilting, spending a whole day window shopping. At three months testing, I was clear of the virus. I am confident I will be a “sustained responder”. Don’t ask me how I know that – I just do. • Flo, via Hepatitis Australia’s treatment stories booklet, Treatment, Life, Hep C and Me. Six months after she completed treatment, Flo found out she had relapsed, meaning her hep C had come back. 28
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Image by Dr. Pat, via Flickr.com Name or image may be changed to protect client identity.
I would like to offer some valuable advice. Nurture yourself. Accept help from your family and friends…graciously. Pay someone to do the housework and heavy gardening if necessary. Listen to your body. If you haven’t started treatment yet, get yourself as fit and healthy as you can before you start, use complementary medicine and don’t be too stubborn to ask for help!
Etta James 1938-2012
obituary
S
oul legend Etta James has died, five days before her 74th birthday.
The singer passed away at a hospital in Riverside, California, on 20 January after a two-year battle with leukaemia. She also suffered from dementia and hep C. James was born in Los Angeles in 1938 when her mother was just 14 years old. She began professional vocal training at the age of five with the musical director of a local church, and her big break came after she was discovered by blues star Johnny Otis. James was 14 years old when Otis took her to record in LA and they released their first track in 1955 under the name, The Peaches. She soon launched a solo career, touring with Otis Redding in the 1950s, before finding fame with her debut solo album At Last, which was released in 1961. The record included her massive hit Image via Google Images single At Last and her famous cover Grammy Hall of Fame. of Muddy Waters’ I Just Want to Make Love to You. James’ star on the Hollywood Walk of Fame was unveiled in 2003 and in 2008, her story came Her successful career in the 1960s was blighted by heroin addiction, during which James endured to the big screen in musical biopic Cadillac a number of stints in a psychiatric hospital. James Records, in which James was portrayed by Beyonce. kicked her habit in 1974 but endured another stint in rehab in 1998. James’ career stalled in the 1980s but she made a successful comeback and was inducted into the Rock and Roll Hall of Fame in 1993. A year later she won her first Grammy Award for her album Mystery Lady: Songs of Billie Holiday. She went on to win two more Grammys for her work, as well as a lifetime achievement honour and the induction of two of her songs into the
Her later years were blighted by illness. She was placed under 24-hour care in December 2011 after her health further deteriorated and she spent her last Christmas under the care of doctors in hospital after suffering breathing difficulties. Her death was announced by her longtime friend and manager, Lupe De Leon, and comes just three days after her mentor Otis Redding’s passing at the age of 90. • Abridged from contactmusic.com (20 Jan 2012) http://tinyurl.com/79dsca5
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my story
Vanessa’s story: dealing I
have been a health professional for over 30 years and worked in hospitals across Sydney. My hep C story began when the Red Cross Blood Bank rang to say my son in Year 12 high school had given blood with the school and there was an anomaly in the result – he had tested positive for hep C. The only knowledge I had of hep C was a course I attended at work and I was amazed how many people had the virus. These were not people I knew – they were mostly people who used drugs. It was Easter and I went to the emergency unit of the hospital in which I worked. I wanted to find out immediately if I could also have the virus. This was my first brush with stigma; the young doctor asked very sensitive questions and was very professional but his senior doctor yelled out “She may have hep C; that is not an emergency tell her to come back next week and get on with some real work!” This was the most embarrassing breach of confidentiality and humiliation I have ever witnessed for both myself and the young doctor who was also humiliated whilst doing his job very well. The bullying and abuse among health professionals is another topic! Crying all the way home and facing that doctor again as I did each week was the hardest thing to bear, so from that day I have never disclosed to anyone else about having the virus ... and I am a health professional! I find at times the nurses and doctors can be the worst offenders in the area of ignorance and lack of knowledge about the virus. Comments such as “they are just druggies,” and “oh, they are dirty hep C people” have hurt me silently and also given me a reason to finally write this story. The story gets worse as our whole family was tested and all except two carry hep C genotype 1.
Image by Thomas Hawk, via Flickr.com Name or image may be changed to protect client identity.
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Our family GP recommended the Nepean clinic. There, I found wonderful caring professionals who supported me through my treatment and totally protected my privacy and confidentiality. My biggest fear was a workmate knowing I had the virus.
my story
with stigma Treatment was a difficult time and my biggest stress was going to the pharmacy to collect my medication and being seen by someone I knew. This did not happen and I went to amazing lengths to make sure (late in the day or early morning visits). I would say hi to the pharmacist – who I knew well – and pretend to pick up the medication for someone else. Silly really when my name was on the packets but no one ever said anything. In fact it reassured my faith in health professionals again. I chose not to think about where I contracted the virus as in the end it did not seem important. I think this helped in the blame game – that you inevitably go through. I was more accepting and not angry. The CNC (Clinical Nurse Consultant), was my guiding light and to this day I could not have coped without him; always professional always factual and always positive. He was always honest about the side effects and my fears of privacy. I did have side effects but managed to work full time without taking any sick leave and resting when I came home, sometimes all weekend. The main issue I had was hair loss, fatigue and weight loss – 20kgs – with odd skin rashes and muscle cramps that came and went. I did have very dry skin and a dry mouth. No one in the work place ever suspected anything and I just said I was dieting until the weight became too obvious! I am sure they thought something but were not sure what. Isn’t it strange – if you have cancer you tell people and they are sympathetic but if you have hep C my thoughts are that they judge you immediately and yet the treatment must be similar in the way it effects your body to rid the virus. I hope others seek treatment and find their own “CNC-hero” whom they can trust and who will guide them through treatment, never judging or commenting on their past or their fears (that sometimes seem silly after you survive the treatment).
I now understand people with hep C and what they have been through. I would like to go on and further research the field as far as nursing care and I have continued to gain knowledge in the area. I look forward to the Hep Review as if it is a secret silent pact I have with other readers and we share hopes and dreams about better treatments and cures. It sounds crazy but for two years after treatment I could not get the courage to ring for results. I was convinced it had not worked but yes, I had cleared the virus. I encourage everyone to seek treatment. I have to thank my nursing staff for your wonderful knowledge and total professionalism in the field, and also my specialist for your knowledge in the field and also the wonderful blood pathology staff who never judged or showed any bias towards me. Please continue the good work. I also want to thank the Hepatitis Helpline staff who were also a wonderful support and very knowledgeable and always available. Support is out there – you just need to give it a go! Recently, my son has also survived the treatment and has also gained an appreciation for others who have hep C. In some strange way the virus has enriched our lives and made us and our family more aware and informed about hep C. My aim now is to address stigma and educate other health professionals, doctors and nurses, especially those in the emergency departments. I still find many doctors are unaware of the illness, the treatment and the side effects – and I’ve discovered there are serious issues in the case of mental illness and hep C. I believe we need more funds to research the virus and to tell us more about how the virus is affecting people – many who have the virus without even suspecting. • Vanessa, NSW (not her real name)
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feature
Hep C is biotech’s Daytona 500 The hep C treatment market is turning into a battle royale that’s more wide open and unpredictible, writes Luke Timmerman from the USA.
B
iotech rivalries are sometimes a bit like boxing matches, where you have two lone fighters vying for the prize. But the hep C market is turning into a battle royal that’s more wide open and unpredictable, with all the competitive manoeuvring, surprise crashes, and comebacks you might expect from the Daytona 500 (USA’s most famous car race). The medical advances in hep C have been dizzying during 2011, especially in what it meant in terms of multi-billion dollar business implications. The safest thing to say is that there’s plenty of good news for patients but that shareholders in the pharma companies had better hold on tight as new treatments and standards of care emerge. Some commentators figured that Gilead Sciences had essentially locked up the dominant position through its $11 billion acquisition of Pharmasset. But it’s still too soon for anyone to declare victory over the wily and fast-mutating hep C virus. Given the way drug development is going now, it’s possible we could have duelling antiviral drug cocktails within five years that cure almost 100% of patients. And before we get there, we’re going to see some fascinating chess moves – and probably a few surprising collaborations – from companies like Vertex Pharmaceuticals, Merck, Roche, Johnson & Johnson, Bristol-Myers Squibb, and Abbott Laboratories, as well as several smaller biotech startups like Inhibitex. Rival drug companies often don’t like to test combinations of experimental drugs together in clinical trials, because when side effects emerge, people often like to point the finger at the other guy’s drug. And who wants to divvy up the profits with some other pharma giant when you want to have it all yourself? But with hep C, the market opportunity is so big, and the variety of drugs to attack it is so broad, that pharma companies have set aside those concerns just to get a piece of the action.
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We’ve already seen Merck and Roche form a partnership to co-market Victrelis against the leading drug on the market from Vertex. Gilead just shelled out the breathtaking sum of $11 billion for Pharmasset, even though the smaller company’s lead compound still has to navigate the third and final phase of clinical trials required for FDA approval. Bristol-Myers Squibb and Johnson & Johnson have teamed up in an interesting new collaboration. Roche, through internal efforts and acquisitions, has sought to put all the pieces of the puzzle together under one roof – a protease inhibitor, a nucleotide polymerase inhibitor and a non-nucleotide polymerase inhibitor. Nobody knows which compounds will match up best together, which ones will be too toxic in combination, or even how many antivirals will be needed to raise the cure rate. But it’s worth noting that Vertex raised the bar very high, by getting cure rates up to around 80%. Doctors are certainly eager to get rid of the nasty interferon part of the regimen, but they will only do that when a new regimen can do at least as well on cure rates. And any of these drugs can be derailed by somewhat mild side effects, since the bar on safety is set quite high already. It might be relatively safe and simple to declare Gilead/Pharmasset the winners in this market, but this race isn’t even close to over. There are 200 laps in the Daytona 500, and in the hep C race, I’d say we’re at about lap 50. There are going to be some fascinating strategic manoeuvres, and maybe even a spectacular crash or two, before somebody zooms in under the chequered flag. • Luke Timmerman is the National Biotech Editor of Xconomy, and the Editor of Xconomy Seattle. Abridged from xconomy. com (12 Dec 2011) http://tinyurl. com/7fnvmek Image above, 427cu in Shelby Ford Cobra, via Google Images.
Shayne’s story: regretting that tattoo
my story
I
n 2003 while serving time in a South Australian prison, I made the decision to be like all the other guys and get a tattoo. I knew all the risks involved, no matter how efficiently I cleaned the equipment. I probably knew better than most because I was also a peer health supporter. I told people of the risks of hep C, the possible outcomes and impact it could have. I should have taken my own advice as, just two days after being tattooed, I was ill. I had no energy and couldn’t get out of the bed. I was taken to the infirmary and asked to have blood taken. Something within me told me it was hepatitis. The test taken that day came back negative but the next test two weeks later came back hep C positive. I was feeling better by this point and hoped my body would fight it off naturally. Unfortunately it is now eight years later and my virus is still with me. Over these eight years, hep C has really had an impact on my life. I am a hairdresser by trade and although I have never cut myself, I am always very conscious of avoiding doing so. Although I take care, I have felt the need to disclose to employers, which has at times ended in an “unrelated” employment termination. Before this, I was an award-winning stylist being involved in many fashion events.
Image by Parker Michael Knight, via Flickr.com Name or image may be changed to protect client identity.
Both of my daughters discovered boys and, now in their teens, have started shaving their legs. To be safe, I have a large yellow sharps container to dispose of my used razors. Hep C has affected me both mentally and physically, so I have made the decision to start on the combination treatment. I start in six weeks. I know it may be hard at times but I want my life, career and health back. To everyone in custody, please think hard before putting yourself at risk. You may not care now but you will later and believe me, the hassles of hep C aren’t worth it. • Shayne, SA.
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Vein Care
www.hep.org.au
Cocaine
Drugs that damage veins
l
Also, it is a very short-acting drug. This can result in lots of injections - and a huge amount of
Cocaine is a very powerful local painkiller. This can cause big problems because once even a small amount has been injected, bad injecting technique causes no pain.
l
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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AH E
LL
OF
INE
AD RU G
CA
HIV
A hep
Sexual risks of HIV and hepatitis. hep B
Injecting technique and vein damage
The Hep Review harm reduction poster, March 2012 (#31). 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
IS
CO
HIV and hepatitis
Like amphetamine, cocaine can also make you less likely to worry about:
damage - being done in a short period of time.
feature
Down from the m the Clinic Adrian Rigg explains how liver clinics work and draws on an award-winning example at Nepean hospital.
B
ig can sometimes be good. Liver clinics are large, busy places, offering information, support and treatment for liver diseases like hep B, hep C and liver cancer. They are often attached to hospitals, so they can dispense drugs that are subsidised by the Pharmaceutical Benefits Scheme, such as pegylated interferon and ribavirin. It also means that other hospital services are on site and available to patients. There are two types of liver clinics: those that follow a standard model of care, where patients are mostly seen by doctors (a referral from a GP is needed to make an appointment); and those that follow a nursing model of care, where the majority of care is provided by nurses, with regular consultations by doctors (a referral is not needed for the initial appointment, although it is required if the patient goes on to see a doctor at a subsequent appointment). One of the most well-regarded liver clinics in NSW is at Nepean Hospital (see ED74, p6). They follow a nursing model of care, and provide treatment for many people with hep C. The clinic is overseen by Vince Fragomeli, Clinical Nurse Consultant. “Most people who come to the clinic have known about their hep C for some time, but we can help de-mystify hep C and the treatment options,” says Vince. “For people who have just been diagnosed, we can take time to effectively convey the test result.”
The first appointment
People choose to attend liver clinics for different reasons, and at different stages of their lives. Some people may have known about their hep C for years, and have recently decided to explore their health and treatment options. Some may have been encouraged to attend by their GP, and some are
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newly diagnosed and want to know more about hep C. Many people will know a lot about hep C already, but the clinic provides a good opportunity to clarify information and ask any questions in a professional and understanding environment. Most people who visit a liver clinic for the first time have been referred by another health professional: perhaps another consultant, a drug and alcohol service, a sexual health clinic or a GP. The first appointment is a discussion; staff will answer any questions, and will also ask lots of questions to gain a good understanding of the patient’s situation. Vince says that most people are relaxed during the appointment and feel comfortable with the staff. “We can help people get into a positive frame of mind about hep C and treatment,” says Vince. “Some people are amazed to know their chance that we can cure their infection.” Staff will explain the natural history of hep C and its effects on the body, particularly the liver. Some people like to know how they acquired hep C, and the first consultation can help with that. This also helps determine how long they may have had hep C, and therefore the likely health of their liver. Each person’s general health can be assessed, and other factors such as body weight, smoking, drinking and drug use will be discussed with a view to harm reduction. Thorough blood tests are conducted to detect any other issues which may affect general health; ultrasounds and fibroscans can also be arranged if needed. Liver biopsies are no longer required for treatment and are usually only done if the results of a fibroscan are inconclusive, or if there is reason for particular concern about a person’s liver. Treatment options are discussed at this stage so that people can start to consider their choices. This is also the time to determine each person’s
mountain:
Image by Paul Harvey
feature
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feature needs. Patients will be asked about their history of depression, anxiety and mental illness. This is so that additional support and medication can be provided to make treatment easier and more likely to succeed. Referrals to other specialists, such as psychiatrists or counsellors, can be recommended as part of the first appointment. “We will arrange for any additional referrals to be made at the first consultation,” says Vince. “We can get things underway so that issues don’t come up later and cause delays to treatment.” The first appointment usually takes between 30 minutes and an hour. Patients will be given written information to take home to absorb in their own time, and are encouraged to discuss all of this with partners, family or close friends so that everyone concerned will have a good understanding. It can be a lot of information to take in, and some people choose to bring someone with them to their first appointment. Most people go on from their first appointment to engage in the clinic’s services. If a person doesn’t return, they are usually given a follow up phone call and their file is kept in case they decide to return later. Treatment and ongoing care
One outcome of the first appointment is a good history of a person’s health and needs, so that all information can be assessed at the second appointment. The doctor can then recommend the best course of treatment and any additional care, and discuss this with the patient. People may need some time to consider their treatment options, and also to prepare themselves – physically, psychologically and practically – for treatment. Liver clinic staff will be there to help them with this process and support them along the way. At the start of treatment, appointments are usually scheduled for week two, week four, and week eight; once treatment is going well, appointments can be reduced to once every six weeks. These times are set at the start to ensure that people don’t miss out on care; it also helps to get them into a comfortable pattern and to make hep C treatment a part of their routine. They will periodically see the doctor, who can monitor their progress and deal with referrals to any other specialists as required.
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Ken had need for some additional medication during treatment. In this case the liver clinic liaised with other services to provide the extra support and treatment he needed. “I was very impressed with the good communication between the liver clinic and haematology departments,” he says. At the Nepean Hospital clinic, a patient may see any one of the nurses throughout treatment; they will usually see the same doctor. A relationship is built up with the team, so that they are all able to provide the care needed and the patient will feel comfortable with all of them. Some people will need additional support for various reasons, and more frequent appointments would be made to provide this. “We have guidelines for the minimum number of appointments, but if people need more support during treatment we will see them more often, even if it’s just to say hello and offer encouragement,” says Vince. The liver clinic will strive to fulfil all the needs of their patients. They encourage people to contact the clinic staff first if they have any questions or concerns; this helps ensure that the information patients receive is consistent, correct and relevant to their situation, as well as helping to build the relationship. Some clinics provide support groups; others can recommend groups for individual circumstances. Stephen had a good relationship with the team at his liver clinic. “Even after finishing treatment I dropped in to see the staff, just to say hello,” he says. “We had a chat and they were interested in how I had progressed since ending treatment.” Treatment trials
Liver clinics are often involved in treatment trials. Pharmaceutical companies will approach clinics with a view to including them in a study. They need to ensure that the clinic can meet all the requirements of a trial, such as transferring electronic data securely, preparing blood samples etc. The clinic will also need to have a number of patients who fit into the study’s target group. Before a person can be recommended for a treatment trial, they will be assessed to determine if they meet the criteria for the study.
feature
Image via Google Images
This involves a rigorous process to ensure that the patient will meet the needs of the study, and that the study is appropriate for the patient. Some people see participating in a trial as a great opportunity; they can access treatments that may have a shorter duration, fewer side effects or a greater chance of clearing hep C. They may also like to be involved in something that could potentially benefit many more people in the future. Other people prefer to use previously tried and accepted treatments. There are many benefits to using a liver clinic that is attached to a hospital. A range of services is located together, usually under one roof: nurses, doctors, pathology collection for blood samples, pharmacy for prescription fulfilment and additional facilities such as drug and alcohol
services and counsellors. This makes it much easier for patients to access everything they need in the one place, while helping ensure that they are given consistent and professional service. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com
For more information about hep C treatment and your local treatment options, contact the Hepatitis Helpline. Also consider our HepConnect service; it is a peer support service where people considering or undergoing hep C treatment can talk with another person who has already had treatment. See page 55.
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feature
A prisons’ snapshot Here, we provide a bit of an update on some interesting - and some alarming - prison statistics.
O
ver one third (37%) of the total Australian prisoner population is located in New South Wales. Compared to 32% of the general Australian population living in NSW. There are currently over 10,000 people in prison on any one day in NSW, with up to 30,000 people cycling through the NSW prison system each year. Nearly half of these people will be back in prison within two years. Drug and alcohol use is often a contributory factor for those in this cycle of reoffending, and re-imprisonment.
At the same time that NSW imprisonment rates are increasing, crime in NSW is decreasing. Recorded crime statistics in 2009 indicate that none of the major categories of crime showed any increase, property crime reduced and violent crime was stable. Research from the NSW Bureau of Crime Statistics and Research found that dominant factors in reducing property crime rates appeared to be “a reduction in heroin use, rising average weekly earnings and falling long term unemployment.” How long do people stay in prison?
How many people are in NSW prisons?
• Of all prisoners (sentenced and unsentenced) on 30 June 2009...
During 2009-2010...
• 7.1% of prisoners were on periodic detention.
• an average 10,352 people were in custody in NSW
• 28.7% of prisoners serve less than two years.
• 92% were male and 7% were female • 22.1% of the full-time prison population were Indigenous
• 14.8% of prisoners serve between 2-5 years. • 21.7% of prisoners serve between 5-20 years • 3% of prisoners serve 20 years or more.
• 67.2% of prisoners had experienced previous adult imprisonment.
• 1.3% of prisoners are serving life/forensic patient.
Numbers on the increase
• 23.4% of prisoners are unsentenced with no fixed date of release.
There was a 50% increase in the yearly prison population between the financial years of 1992/1993 until 2006/2007. Conversely, crime rates have stabilised or declined in most categories over that time and continue to stabilise and reduce between 2004 and 2008. Why so many more prisoners?
There has been a shift in legislation and political agendas in NSW that has led to a strengthening of “tough on crime” policies and an increase in imprisonment rates. This has seen an increase in the number of people in custody on short sentences and the removal of the presumption of bail being granted. This meant that in 2006/2007, over 10,000 people who were held on remand were later released without a conviction.
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Hep C status
Recent health statistics show that 35% of prisoners across Australia are hep C positive, and the incidence of new infections occurring in correctional settings is significantly greater than found in the community. This high prevalence and incidence of hep C within correctional settings provides challenges to controlling hepatitis C within the community as a whole. • Main section abridged from nobars. org.au http://tinyurl.com/7penm89 and correctiveservices.nsw.gov.au http://tinyurl. com/7rjyjro Hep C status abridged from Regulating Hepatitis C: Rights and Duties. Preventing Hepatitis C Transmission in Australian Adult Correctional Settings (2010) http://tinyurl. com/76djg4b
feature
Image by OzinOH, via Flickr.com
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hep chef
Honey harissa glazed C
ooking the eggplant twice – as you do in this recipe – gives it a wonderfully luscious texture and deep rich flavour. It also gives you the opportunity to bake other vegetables that you will use in the next few days such as beetroot and sweet potatoes. No need to peel the eggplant as the contrast of the black skin and the different texture add to the dish.
Ingredients
Method
• 2 medium/large eggplant no need to peel
Preheat your oven to 220C. Line a large oven tray with baking paper.
• 90ml extra-virgin olive oil, plus 1 tablespoon for frying • 3 small cloves garlic, finely chopped • 1 heaped tablespoon finely chopped fresh ginger • 1 teaspoon ground cumin • 1/2 teaspoon ground coriander seeds • 1/2 teaspoon cinnamon • 2 teaspoons harissa (or dried chili flakes to taste ) • 1/4 cup honey • 3 teaspoons sun-dried tomato pesto (you can whip up your own simple version by whizzing sun dried tomatoes, a few cloves of garlic and a handful of nuts such as almonds with about a 3rd of a cup of olive oil) • 1 1/2 tablespoons lemon juice, or more to taste • 1 1/2 teaspoons sea salt, or more to taste • Small coriander or mint leaves, freshened in iced water for 10 minutes, to garnish Optional extras
• Medium sized sweet potato • A cup of barley or brown lentils • A cup of chopped cabbage
Halve each eggplant crosswise then slice each half into 6-8 wedges (six if the eggplant are on the small side, eight if large) Tip them onto the prepared oven tray and spread them out in a single layer and drizzle with a little olive oil. Put the tray in the oven and roast the wedges for 30 minutes or until they’re deep golden, turning them halfway through the cooking time, along with the other vegetables you may like to either add to the dish or eat in the next few days! Meanwhile, heat the remaining tablespoon of oil in a very large frying pan over low heat. Add the garlic and ginger to the pan, and cook them, stirring, for 30 seconds. Now mix in the spices, harissa, honey, tomato pesto, lemon juice and salt then turn off the heat. When the eggplant wedges are ready, reheat the honey mixture over low heat. Using tongs, carefully transfer the eggplant (and sweet potatoes and the other ingredients such as the cabbage and barley or lentils) to the honey mixture in a single layer. Cook them gently, turning them carefully once or twice, for eight minutes or so until they have become impregnated with the honey glaze (just keep an eye on them as the honey scorches easily). When the cabbage is cooked (best if it remains a little crunchy) – add a little more lemon juice or salt if necessary and dish up. Because of the addition of the extras this is a one pot meal but if you like you could add a salad or tabbouleh for an even more impressive presentation. This dish serves four people.
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eggplant
hep chef
Image by Paul Harvey
This edition’s Hep Chef is Michelle de Mari of Rose Bay.
Do you want to share your recipies with our readers? Send them in. Recipies should be easy to prepare, healthy and most of all, exciting! Email or phone the editor for more information. pharvey@hep.org.au
TIP: Want to cook greener and stay a step ahead? A great idea when you bake the eggplant for this recipe is to use the oven heat for other cooking. With the eggplant, pop extra other vegetables such as beetroot, sweet potatoes, carrots, zucchinis into the oven. When they’re cooked, store them in your fridge for later. These are healthy and low GI and you’ll have them on-hand, ready to turn into a tasty salad (use a vinaigrette maybe add some seed mustard and or honey and some and some salad leaves) or to use in other cold dishes or sandwiches.
02 9332 1853 Hep Hep Review Review Edition Edition76 76 March March2012 2012
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opinion
A small discussion Joe Kim interviews Lisa Pryor, a journalist and author who has recently released A Small Book About Drugs.
J
oe Kim: I was impressed by the argument that the harm of criminalisation is an important concern and that the accusation that drug law reform advocates glorify and romanticise drugs has been very unfair. What are your thoughts as to why criminalisation does more harm than good? Lisa Pryor: It is really not so different from other controversial practices which have been legalised in recent decades, such as prostitution and abortion. Neither of these practices was legalised because they were harmless, they were legalised because of the realisation that criminalisation did not eradicate these activities, it simply made them happen in ways which were particularly harmful: taking place underground without proper safety measures, providing a lucrative source of income for organised crime, enticing police into corruption, punishing victims as much as perpetrators. The situation with drugs is very similar. You don’t have to love drugs to think that drug laws should be reformed, just as you don’t have to love prostitution and abortion to believe they should be legal. Joe: You speak of most people moving on from their drug use in the third or fourth decade of life, or the need for people to move on if they are no longer enjoying the experience, and this aligns with messages that are disseminated in the harm reduction sector. But in my own experience, I’ve found that the vast majority of people either change their drug use so that it is solely legal (alcohol and caffeine mostly), or they change the types and/or frequency of their illicit drug use. It is incredibly rare that anyone ever moves on from drug use altogether – in fact, it could be argued that most people are drug-dependent for most of their life. That is, they require the use of drugs in order to live a fulfilling life. Can you comment on this? Lisa: Statistically, drug use, including alcohol use, does drop once people hit their thirties. I also don’t think drug taking is necessary to a fulfilling life, think of addicts in recovery who
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find life most fulfilling once they stop taking drugs, people who never drank or took drugs for religious reasons, or all the women of childbearing age who go for years without being intoxicated because they are pregnant, breast feeding or trying to conceive. But I would agree that a lot of people moderate their drug use with age rather than forgoing it altogether. Joe: Given the evidence on addiction harms that has emerged over the last 50 or so years, why doesn’t everyone just stop consuming nicotine, alcohol and caffeine, given that these are the drugs people seem most dependent upon? Many drinkers and smokers expect abstinence from the “addicts” in our society, so why don’t they lead by example? Lisa: While people have stopped consuming nicotine in large numbers you are right that there aren’t many signs that society is weaning itself off alcohol and caffeine. Those who drink alcohol and coffee could plausibly argue that this is reasonable because there are known safe levels of alcohol and caffeine use and if they stick within these levels they are not doing themselves damage. However, the reality is that the way we commonly use alcohol is not within these safe levels. For a woman to drink safely she would never be able to have four standard drinks in a sitting, which means she would never have more than two large glasses of wine at a dinner party, never have more than two caprioskas at a party, never have a gin and tonic followed by a glass of wine followed by a dessert wine at a restaurant. Perhaps the underlying reason why drinkers think of illicit drug use differently is that it makes them feel better about their drinking. Joe: I have been working or dealing with drug use every day for the last 20 years and the conclusion that I have come to is that the top three “problem” drugs in Australian society are alcohol, nicotine and benzodiazepines (e.g. Valium, Seropax, Xanax etc.). The first and third are the only major drugs that can cause
opinion
about drugs death in withdrawal and all seem to interfere the most with humanity, on both an individual and societal level – and that is even with the incorporation of the legal/illegal divide! Any thoughts? Lisa: In an ideal world we would regulate drugs more strictly or less strictly according to the level of harm they cause. Unfortunately drug regulation has not developed quite so rationally and reflects historical accident more than anything. One of the dangers of the legal/ illegal divide is the false assumption it seems to engender in those who favour alcohol and prescription pills, that it must be safe or it wouldn’t be legal. There is a quote I love from the Renaissance physician Paracelsus which points to the fact that you have to be circumspect about all substances: “Poison is in everything, and nothing is without poison. The dosage makes it either a poison or a remedy.” Joe: Following on from the last question, I have also seen opiate-dependent heroin injectors who are of superior health (both mental and physical) to people who have never touched a syringe in their life but have experience with other drugs – and that is over the medium to long-term. What do you think about this observation? Lisa: I don’t feel like I have enough detailed knowledge to comment but I suppose it may have something to do with heroin for all its faults, not least the risk of sudden death, messing less with the mind than drugs like ice. It may also have something to do with the fact that people who are still alive after 20 years of heroin dependence are bloody hardy individuals. Joe: As also seen in your book, why do you think we see so many creative minds immersing themselves in drug use? Lisa: Perhaps creative people fear ordinariness, and try to escape it through drug use and creative pursuits alike. Or more positively, perhaps creativity and drug use are both ways to have adventures and explore new worlds. When I
Image via Google Images
think of the particularly creative people I know, artists and writers for example, I would say most would have enjoyed illicit drugs at some point in their lives. Then again I’d also say the most successful ones have not used drugs as a creative tool. As anyone who has tried to create something while high on drugs would know, it usually doesn’t look or sound or read so well once the drugs wear off. It might not seem very romantic but the most common traits of people I know who have achieved a lot creatively are
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opinion discipline, commitment and hard work. Joe: Can you offer a reason for why the topic of drugs brings in the lofty opinions of individuals who have little or no expertise in the area – we never see this with aeronautics or heart surgery or genetics? Why is it that backgrounds of ignorance are so easily accepted in the field of drug use? Do people know there are professors who study addiction, for example? Lisa: I guess because most people do have some experience of drug use in a way that they don’t have experience of rocket ships or surgery or chromosomes. Also many people see drugs as a moral issue rather than a health issue. I would say that absolutely there are questions of morality related to drug use, but it is impossible to have a meaningful moral position without at least trying to understand the science of addiction and the impact of addiction on a person’s free will and ability to make choices.
in mind when it comes to decriminalising illicit drugs. We need to look at models which don’t allow profitable, commercial interests to develop which will lobby for the laws to develop in ways which are not in the public interest. • Lisa Pryor is a journalist who specialises in writing “career-limiting” books. Her first book, The Pin Striped Prison, was about neurotic overachievers who get trapped in corporate jobs they hate. In this interview, Lisa talks about her second book, A Small Book about Drugs. Lisa previously worked at The Sydney Morning Herald where her roles included investigative reporter, opinion page editor and columnist. Joe Kim has worked in the drug sector for 20 years. His comments represent his personal views and not those of his current employer.
Joe: You recently said that you would feel safer if your young daughter was around a group of older men who had smoked pot or taken MDMA, than guys who had drunk too much alcohol or were on crystal methamphetamine. If your child showed interest in cannabis or ecstasy, how would you feel about taking it with them as a safety assurance? Lisa: My gut reaction is that I wouldn’t. Absolutely not if she was high school age, probably not even after that. To me it is a boundary I would not want to cross. I don’t want to intrude in her social life that much, or feel the need to be the boss of her experience. Maybe there are circumstances in which parents and adult children can make this work, but personally I think most children, even adult children, would probably prefer not to see their parents intoxicated. Joe: Finally, what do you think we would experience in Australia if alcohol, nicotine and caffeine were made illegal tomorrow, using the “success” of the “War on Drugs” as a justification? Lisa: It could never happen. There would be a revolt. There would also be powerful commercial interests which would throw money around lobbying against it regardless of whether or not there were health benefits. This is worth keeping 46
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News Boceprevir available in Australia Putting the brakes on hep C Down from the mountain: the Clinic Honey harissa glazed eggplant A small discussion about drugs A prison’s snapshot Opinion page Hello Hepatitis Helpline Personal stories Research updates Keyhole to our work Harm reduction poster Promotions Q&A
Boceprevir available in Australia
Putting the brakes on hep C
Down from the mountain: the Clinic
Honey harissa glazed eggplant
A small discussion about drugs
A prison’s snapshot
Opinion page Hello Hepatitis Helpline
Personal stories
Research updates
Keyhole to our work
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liver-friendly eating
Multicultural HIV/AIDS and Hepatitis C Service 50
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feature Hepatitis C factsheets Treatment response Introduction Defining response Predicting response Relapse Cure (sustained response) Viral persistence? Also see
• Non-Response: no significant drop in viral load during treatment. • End-of-Treatment Response: whether or not the virus is detectable in your blood at the end of treatment (either six months or 12 months). This is good but it doesn’t mean you are cured. • Sustained Viral Response: viral clearance as proved by a negative PCR result six months or more after treatment finishes. This is the result that people hope for and is what doctors refer to when someone is successfully cured.
Predicting response
Introduction When talking about treatment response a lot of technical medical language is used. It is important for people with hep C to understand the meaning of this language so they can monitor their health and participate in making decisions about treatments. Listed in the following section are the different terms used to define a person’s response to treatment, eg. rapid, early, initial, non-response. These responses are measured by two types of blood tests: the PCR (RNA) viral load test or PCR (RNA) viral detection test.
Defining response There are several different results that can occur during and following a course of treatment: • Rapid Viral Response: viral clearance at week four of treatment. The best sign that shows someone has a higher chance of sustained viral response (see below). • Early Viral Response (complete): viral clearance at week 12 of treatment. A good sign that shows someone has a higher chance of sustained viral response (see below). • Early Viral Response (partial): significant drop in viral load at week 12 of treatment, ie. two log drop in viral load, eg. from 60,000 down to 600.
Successful response to hep C treatment is mainly related to three things: the genotype of hep C virus that a person has, the person’s IL28b genetic test result (see Testing Overview factsheet) and how quickly the person responds to treatment once it is started. If you have hep C virus genotype 1, you are given 12 months of treatment and have an average 50% chance of cure (although if you have genotype 1 but have minimal or no liver damage, you have a 6070% chance of cure). If you have hep C virus genotypes 2 or 3, you are generally given six months of treatment and have an 80% chance of cure. Treatment response is also related to the IL28b genetic test – which looks at your body’s genetic make up and predicts your chance of being cured. If the level of virus in your blood drops significantly within the first 4-12 weeks of treatment, you are seen as having a better chance of being cured.
Relapse This implies an initial response of some kind (usually a lowering of viral load), and then a return to abnormal values. It can happen while on treatment, or after treatment finishes.
This factsheet was produced by Hepatitis NSW and was last reviewed in March 2012
To viewHelpline thisinfoline complete two-page factsheet, and our range Hepatitis and HepConnect peer support service: 02 9332 1599 / 1800 803 990 of 40 info: www.hep.org.au Web go peer to support: www.hepcaustralasia.org otherWeb factsheets, please http://tinyurl.com/3f2gx2p
1
Hepatitis NSW Inc is a community-based, non-government organisation, funded by the NSW Ministry of Health.
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feature
HELLO HEPATITIS HELPLINE Hi. I’ve just come into prison for the first time, and I’m worried about keeping healthy. I know a lot of people in here have hep C, and I want to know how to steer clear of it. Is it easy to catch?
You’re right to think that hep C is a big problem inside. In 2009, around 30% of people in NSW prisons had been exposed to hep C – yet on the outside it’s more like 1%. The good news is that hep C is hard to catch in most situations. Because it’s only spread by blood-to-blood contact, you can’t get the virus by sharing food, sharing toilets, kissing or most other everyday contact. It’s also not usually passed on through sex, unless sexually transmitted infections are involved or there’s blood-to-blood contact. In Australia the most common way to get hep C is through shared drug injecting equipment: needles, syringes and anything else that’s used when you’re injecting. That’s a tricky issue in prison because we know that prisoners can get drugs to inject, but getting sterile injecting equipment can be much harder. In reality, if you’re injecting inside you’re probably using needles and syringes that have been used by lots of other prisoners. That makes injecting in prison particularly risky in terms of hep C. It’s also possible to get hep C through tattoo and piercing equipment if it’s not sterile. Again, you’re very unlikely to be able to get sterile equipment in gaol, so prison tatts and piercings are especially risky. Those are the two main risks for hep C, but there are a couple of others to bear in mind. Toothbrushes, razor blades and tweezers can get blood on them, so it’s best not to share any of those. It’s not common for someone to get hep C that way, but it can happen. It’s also really important to be aware of blood in general: hep C could get passed on in a fight, for example, if there are open cuts and blood.
“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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So what can you do to avoid hep C? Well it sounds simple but to avoid hep C, you need to avoid the activities we’ve just described. If you use drugs inside, try not to inject them. If you want a tattoo or a piercing, it’s best to wait till you are released. Try to make sure other people don’t use your stuff (toothbrushes and razor blades), and try to avoid other people’s blood where you can. If you knock out blood-to-blood contact, then you can avoid hep C or avoid passing it on yourself. If you do choose to inject inside, then you can clean your equipment with FINCOL. It is a disinfectant freely available in all prisons in NSW. Using it to clean your equipment isn’t perfect. Even if you do it correctly there can still be tiny bits of blood present – and you’ve got to do your cleaning in secret. If you’re going to use inside though, it’s the best you can do. To clean injecting equipment in gaol: 1. Fill a container with cold tap water and flush the fit out at least three times. Squirt the water down your sink or into a drain – don’t put it back into the container. 2. Take the fit apart and soak it in FINCOL for at least five minutes. 3. Put the fit back together and flush it with cold fresh tap watter at least three times. This time, make sure you shake the fit when you’re flushing it to get rid of the FINCOL. • If you’d like more information about staying healthy on the inside, see Health Survival Tips, ED74, page 36. Also, don’t hesitate to phone the Prisons Hepatitis Helpline. Freecalls: on prison phone enter your MIN, enter your PIN, press 2 for common calls list, press 3 for Prisons Hepatitis Helpline.
L
aura Kennedy, original bassist and co-founder of cornerstone No-Wave, post-punk band, Bush Tetras, passed away due to complications from hep C. According to BrooklynVegan, Kennedy died on 14 November 2011. Kennedy was diagnosed with hep C almost 20 years ago while living and playing music in New York City. She had been living in Minneapolis for the last 12 years with her girlfriend, and after a long and trying wait, she received a liver transplant at the University of Minnesota. Fundraising initiatives from her friends and wellwishers helped fund her weighty medical bills and aided her recovery. In January 2009, the Bush Tetras reunited to play the Twin Cities for their first time in 25 years along with Suicide Commandos, David Thomas of Pere Ubu and Skoal Kodiak at a fundraiser at Nick and Eddie. Bush Tetras achieved modest chart success in the early 1980s with two dance hits, “Too Many Creeps” and “Can’t Be Funky.” “I remember seeing Laura jump up with her bass in some kind of rock ‘n’ roll move (which no No Wave person would ever do) and it forever blowing my mind,” Sonic Youth’s Thurston Moore wrote in his book 2008 book No Wave: Post-Punk. Underground. New York. 1976-1980.
“I saw her as the coolest girl ever at that point. She certainly remains that way in my consciousness.” • Abridged from spinner.com (15 Nov 2011) http://tinyurl.com/7xgwydv
feature my story
The Little Book of Hep C Facts Do you know your basics about hep C? Keep an eye on this column. It is taken with thanks from The Little Book of Hep C Facts, Hepatitis South Australia. • About 25% of people who contract hep C clear the virus from their bodies without treatment. This will not protect against future infection • There is no vaccination against hep C • Hep C can be treated • Hep C treatment has an overall success rate of 60%. Success ranges from 50% to 80% depending on the strain (genotype) of hep C and degree of liver damage • If a person has been successfully treated for hep C, the virus can no longer be detected in his/her blood • Successful treatment does not immunise a person against hep C. It is possible to be re-infected • There is a higher risk of liver damage if you have hep C and drink alcohol • Smoking tobacco can increase the progression of liver disease This is the fifth 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
Image by Janet Callahan, via Google Images
Hep Review Edition Edition76 76 March March2012 2012 Hep Review
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Image by semireal_stock, via www.deviantart.com
obituary Laura Kennedy
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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.
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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
www.hepatitisc.or
g.au
or call the
Hep C Helpline (see over)
54
www.hep.org.au
sms
0404 44 Don’t discr
iminate
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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Bathurst region hepatitis clinic
Do you want to get healthy? See inside to find out how.
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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 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.
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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 get healthy campaign a call. Ed. 56
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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 annual 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 and Member’s News, as well as Transmission Magazine 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 be involved, should you want to, that are exclusively for members.
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.
Membership can all be done online so it’s easy, quick and convenient to stay informed.
NB: Member News is a quarterly newsletter posted exclusively to financial members (including Zero Fee members) of Hepatitis NSW.
A historical perspective – April 1997 Headlines from 15 years ago...
• Parliament of NSW Standing Committee on Social Issues Inquiry into Hepatitis C opens • Editorial by Nicholas Cowdery QC • Hepatitis C and injecting drug use • Exploding the myths (about people who inject drugs) • New specialist group to advise on hep C • Time to change drug laws (Jim McClelland) • Inquiry begins into safe injecting rooms • Injecting discrimination • Walking a tightrope: law enforcement and health 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 18, August, 1997.
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research updates Research updates introduction In previous readership surveys many people said they wanted more detailed information on developments in vial hepatitis. These research update pages help 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.
Hep C link to heart disease USA – Coronary artery disease was significantly more prevalent in patients with hep C, compared with control subjects. The findings were presented at the annual meeting of the American College of Gastroenterology. “An association of coronary artery disease [CAD] with hep C has been suggested, but definitive data are still lacking,” said Dr Sanjaya Satapathy, who conducted the study while at Long Island Jewish Medical Center, New York. To estimate the prevalence of CAD in hep C patients, Dr Satapathy and colleagues reviewed data from 934 individuals who were seen at a single centre between 2002 and 2008. Of these, 63 had undergone coronary angiography. The investigators compared their data with data from 63 matched controls without hep C. Stenosis (an abnormal narrowing in a blood vessel) greater than 50% was found in 44 of the HCV cases (70%) compared with 30 controls (48%). Stenosis greater than 75% was found in 42 patients with hepatitis C (67%) compared with 29 controls (46%). In addition, multivessel coronary artery disease was significantly higher in hep C patients compared with controls (57% vs. 16%). The prevalence of single-vessel involvement was greater in the control group. The study was limited by the retrospective design and small sample size, said Dr Satapathy. However, the findings suggest that CAD is significantly more common and severe in hep C patients, and this should be considered by clinicians treating these patients, he said. • Abridged from medconnect.com.au (8 Dec 2011) http://tinyurl.com/84kzujy
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Smallpox vaccine doubles liver cancer survival time USA – It gave us the first ever eradication of an infectious disease; now it may help defeat cancer. Smallpox vaccine has doubled the survival time of people with advanced liver cancer. The vaccine that eradicated smallpox consists of a live virus, Vaccinia, with a surprising taste for tumours. It prefers to infect cancer cells because they turn off the antiviral protein interferon and turn on signalling molecules that attract Vaccinia. Early experiments in a variety of tumours reported in 2007 suggested that this might make the virus, which has been used safely in millions of people, a revolutionary cancer treatment. To enhance this effect, Jennerex Biotherapeutics of San Francisco, California – named after Edward Jenner, who reported his discovery of smallpox vaccine in 1798 – gave the live virus two genetic modifications. One deprives it of an enzyme abundant in cancer cells, to encourage it to replicate there rather than in normal cells. The other makes a protein that attracts an attack by the body’s immune system. In a trial in 30 people at a late stage of the liver cancer hepatocellular carcinoma, those given a high dose of the vaccine survived for 14 months on average, while those given a low dose survived seven months. • Abridged from newscientist.com (14 Nov 2011) http://tinyurl.com/7zn5nz6
research updates Fatty liver explosion USA – Nonalcoholic steatohepatitis (NASH) occurs when fat builds up in the liver. This accumulation of fat damages the liver and leads to cirrhosis. NASH is rapidly increasing in the US mainly related to the epidemics of obesity and diabetes. As a result, the proportion of liver transplantations performed for NASH cirrhosis rose dramatically from roughly 1% in 2003 to more than 7% in 2010. Excessive fat in liver cells in the absence of alcohol is known as non-alcoholic fatty liver disease (NAFLD) and is the most common liver disease in the US, affecting nearly 30% of the general population experts say. Previous research found that 15% to 20% of those with NAFLD have NASH. Primary risk factors for both NAFLD and NASH are obesity, insulin resistance, and diabetes, all of which are increasingly prevalent and could impact the future demand for liver transplantation. In fact, prior studies suggest that by 2025 more than 25 million Americans may have NASH, which may progress to cirrhosis, liver cancer, and liver failure in 20% of these cases. Dr Anita Afzali and colleagues investigated the proportion of liver transplantations of NASHrelated cirrhosis in the US and estimated survival rates of those patients following transplantation. “With the epidemics of obesity and diabetes giving rise to cases of NAFLD and NASH, it is important to understand the impact of these metabolic conditions on the outcomes after liver transplantation,” says Dr Afzali. “Our study confirms post-transplantation survival in recipients transplanted for NASH is excellent and comparable to patients with other liver diseases,” concludes Dr Afzali. “With the shortage of available donor organs, appropriate allocation of livers is an important concern for transplant centres and our findings indicate NASH-cirrhosis patients are potentially good candidates for liver transplantation. However, careful screening for cardiovascular disease prior to transplantation and monitoring of underlying cardiac and metabolic conditions following transplantation is recommended to ensure optimal survival for patients with NASH.” • Abridged from sciencenewsline.com (15 Dec 2011) http://tinyurl.com/6uwzcgz
Potential new treatment for liver cancer discovered USA – For the first time, researchers have discovered a special type of molecular regulator called a micro-RNA (miR-124) that could be used someday as a treatment for liver cancer. The same team also found a mechanism in mice that ultimately causes normal liver cells to transform into cancerous ones. Among the most common causes of and risk factors for liver cancer are hep B, hep C, alcohol use, and exposure to environmental toxins including aflatoxin (see p21). Other factors include cirrhosis, haemochromatosis and nonalcoholic steatohepatitis. In this study, conducted by researchers at the Dana-Farber Cancer Institute, mice were exposed to a cancer-causing chemical called DEN, which triggered a circuit of inflammation in the liver that ultimately led to cancer. The investigators identified one element of the circuit called miR-124. Another key player in the circuit is HNF4a, a substance that has an important role in the formation of liver cells and their function. If HNF4a is suppressed, the result can be inflammation, which can then lead to cancer. According to Dimitrios Iliopoulos, of DanaFarber’s Department of Cancer Immunology and AIDS, he and the team decided to enhance the activity of miR-124 in hopes it would restore normal activity in HNF4a, which in turn would stop the inflammatory cycle and stop liver cancer from growing. When they administered miR-124 to mice with liver cancer once a week for four weeks, they discovered that miR-124 halted more than 80% of liver tumour growth by causing the cancer cells to self-destruct. Another benefit of miR-124 was that it prevented the development of liver tumours. Iliopoulos and his team expressed the hope that “miR-124 potentially could be used as a preventive in patients at high risk of liver cancer or as a therapeutic agent in patients with liver cancer.” They plan to begin a phase I clinical trial to explore this possible new liver cancer treatment in 2012. • Abridged from emaxhealth.com (13 Dec 2011) http://tinyurl.com/6oyr4y5 Hep Review
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research updates Late evening snack may help in cirrhosis USA – Late evening snacks could help reverse muscle loss in patients with cirrhosis, especially early in the course of the disease, a new review suggests. US researchers said late evening snacking was the only intervention that was “simple, inexpensive, and relatively free of side effects with the potential to reverse muscle loss 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. Overall, the intervention was found to decrease lipid oxidation and improve nitrogen balance, regardless of the foods or supplements taken. In longer-term studies, some increases in lean body mass were seen, which the authors said might reflect an increase in skeletal muscle protein synthesis and reduction in proteolysis. 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
Cirrhosis and vitamin D USA – Up to 53% of patients with viral hepatitis– related cirrhosis develop osteoporosis. Given the risk for bone loss, investigators set out to determine the prevalence of vitamin D deficiency and insufficiency among patients with hep B and hep C treated at Weill Cornell Medical Center. Retrospective findings revealed that 64% of patients with hep B or hep C have low levels of vitamin D. “If we treat vitamin D deficiency, we can potentially decrease the high rate of osteopaenia and osteoporosis in this population, including bone loss related to some of the antiviral therapies,” said co-investigator Dr Maya Gambarin-Gelwan, assistant professor of clinical medicine, Weill Cornell Medical College, New York City. Of those who underwent testing, 31% (122 of 395) were vitamin D “insufficient” and 33% (132 of 395) were vitamin D “deficient”. Dr Zobair Younossi a specialist who was not involved in the study, said that prior studies have shown low vitamin D levels tend to be more common in patients with advanced stage fibrosis and cirrhosis. “However, this study shows insufficiency can also be seen in non-cirrhotic patients with hepatitis B and C, and particularly in those with chronic hepatitis B,” said Dr Younossi, vice president for research, Inova Health System, and chairman, Department of Medicine, Inova Fairfax Hospital, Falls Church, Va. Dr Gambarin-Gelwan said that she hopes her research will spur clinicians to routinely monitor vitamin D levels in patients with chronic HBV and HCV infection. She said the small percentage of patients who were screened for vitamin D levels demonstrates that “gastroenterologists and hepatologists are paying too little attention to vitamin D levels.” • Abridged from gastroendonews.com (Oct 2011) http://tinyurl.com/7krn3aa
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research updates The Andalusian trial on heroin-assisted treatment UK/Spain – Heroin/cocaine dependants in Granada in Spain who were being prescribed heroin made greater sustained improvements in their illicit heroin use, crime and psychological health and showed signs of more social reintegration than patients who nearly three years before had been randomly allocated to methadone. Main findings: nine-month randomised trial
Just over 7 in 10 patients stayed in treatment for the first nine months of the trial, more or less regardless of whether they had been allocated to heroin or methadone only. However, by the end, heroin patients had improved more in their experience of feeling unwell, in reducing their heroin use, their risk of contracting infectious disease and their criminal activity. The patients’ assessments of their quality of life and family and social relationships were not significantly affected by the treatment to which they had been allocated. Though heroin patients had in some respects improved more, both sets of patients had generally improved on a variety of fronts, a testament to the benefits of an optimised methadone regimen (adequate doses and psychosocial support) as well as the extra gains available by prescribing injectable heroin to patients for whom methadone had previously proved insufficient. Main findings: two-year follow-up
Two years after the end of the nine months of the randomised trial, two of the 54 patients who could be recontacted were out of treatment, three were in drug-free treatment, 24 were being prescribed heroin, and 25 were in methadone maintenance treatment. Seven were in prison. Though no longer in their randomised sets, the three groups compared at the two-year followup did not differ on the characteristics assessed at the beginning of the study. At the two-year follow-up all three groups were on average using heroin on many fewer days a month, but the reduction had been significantly steeper (down to just over two days) among patients still being prescribed heroin. Associated at least partly with the degree to which injecting had been reduced,
patients still being prescribed heroin had made the greatest reduction in their risk of contracting infectious disease, those offered only methadone the least. Other statistically significant differences were the greater improvements in psychological health recorded by patients still prescribed heroin. In an analysis confined to patients not in jail, those on heroin had also committed crimes on the fewest days in the past month (eight), but this was not significantly different from the reductions in crime recorded among patients at some time prescribed heroin (to 21 days) or those only prescribed methadone (to 10 days). The authors’ conclusions
Two years after the completion of the randomised trial, all patients had reduced their criminality, illicit heroin use and HIV risk behaviours, but those still being prescribed heroin had made the greatest improvements and were the only patients to on average experience improvements in their health and related quality of life. These findings and those from a German trial show that the marked improvement observed in the first months of heroin prescribing can be sustained long-term. It should however be remembered that these results were achieved with a highly selected set of patients who were offered not just heroin, but for nine months the enhanced psychosocial support also available to patients prescribed methadone. This study proves that heroin prescribing has a role in the addiction treatment system for a small group of severely affected opioid-dependent individuals. It provides further evidence that, more so than methadone, the treatment can stabilise and improve the physical and mental health of some long-term heroin users with severe co-morbidities and high mortality who would otherwise impose a substantial burden on the health care system. Oviedo-Joekes E., et al. The Andalusian trial on heroin-assisted treatment: a 2 year follow-up. Drug and Alcohol Review: 2010, 29(1), p. 75–80. • Abridged from findings.org.uk (10 Jan 2012) http://tinyurl.com/7gwjsmx
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interferon-based treatment Triple combination treatment
Treatment generally lasts for either 24 or 48 weeks, depending on genotype.
Victrelis (boceprevir) has been approved by the Therapeutic Goods Administration for the treatment of chronic hep C genotype 1 infection.
Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria:
Approved in January 2012, Victrelis is approved for use in a combination regimen with peginterferon alpha and ribavirin, in adult patients (18 years and older) with compensated liver disease who are previously untreated or who have failed previous therapy.
Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive.
Victrelis is currently not a Medicare subsidised drug. Please phone the Hepatitis Helpline for information about accessing Victrelis.
Standard combination treatment Standard treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily.
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: 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
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. 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
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 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. From 1 April 2006 biopsy examination is no longer mandatory for people wanting to access government-subsidised S100 hep C pharmaceutical treatment. Alternative access
People wanting to access treatment outside of the government-subsidised Medicare S100 scheme can purchase treatment drugs at full price or seek access through industrysponsored special access programs. For more information, 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. 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 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?
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. hep.org.au
A comprehensive and up-to-date website offering information, frequently asked Q&A, free downloadable resources, research reports and government hepatitis strategies. Online chat
The Hepatitis NSW online chat service provides information, support and referral to people across NSW. We do not provide counselling, casework or clinical services such as testing or interpretation of test results. 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
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callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). Family and relationship counselling
If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Family Drug Support
FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics
Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres
Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities
The Multicultural HIV and Hepatitis 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 – also see page 49. 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
support and information services 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 phone peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW). Hep C Australasia online hep C 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 AHCS online hep C support forum
Australian Hepatitis C Support – an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups
For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338. Gosford: 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. Coffs Coast hep C support group
A peer support group for people living with or receiving treatment for hep C. Meets on 2nd Tuesday, every month 4.00-5.30pm at Coffs Harbour Community Village, Earl Street Coffs
Harbour. For info phone Helen Young, 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. Hunter hep C support services
A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean hep C support group
Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light 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. Northern Rivers liver clinic support group
An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539. Port Macquarie hep C support group
Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0412 126 707 or 6588 2750. Wollongong hep C support group
A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am-11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.
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noticeboard
acknowledgements
Upcoming events
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang 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
8th Australasian Viral Hepatitis Conference. Auckland, NZ. 10-12 Sept 2012. http://www. hepatitis.org.au
Complaints
S100 treatment advisor: Kristine Nilsson (AGDHA)
If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2
Proofreading/subediting: Prue Astill Gerard Newham Adrian Rigg Maureen Steele 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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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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7. Payment, GST and postage
NB: Above are Australian rates only. Overseas applicants please contact our office or consult our website for additional surcharge information.
4. Contact with our office We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office.
All Hepatitis NSW membership fees are GST exempt. For health professionals, our membership fees may be tax deductible. If paying by cheque or money order, please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form to Hepatitis NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt ? If you would like a receipt for your payment, please tick here 9. Declaration – I accept the objects and rules of Hepatitis NSW and apply for association membership / renewal. I agree to my personal contact details being held by Hepatitis NSW and used in accordance with the association’s privacy policy. Signed:
Dated:
I’d like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work this section for office use only staff initials
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If you would like to obtain a copy of our constitution or privacy policy, please contact the office (02 9332 1853) or visit our website: www.hep.org.au amount received
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