HEP REVIEW Edition 84
Autumn
June 2014
The tale of two trials: interferon-free trials at St Vincent’s Hospital Complementary and alternative approaches to hep C The ABC of health literacy
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Telling the Tale of Two trials Clinical trials are at the forefront of the fight against hep C. But what the research data and reports don’t tell us about is the human experience behind the statistics. Here, Charlie Stansfield reports on two people’s experience of interferon-free trials being held in Sydney hospitals. linical trials are an intense time in some people’s lives and for many weeks, nurses, dieticians and specialists become regular fixtures, like a big extended family. This story is an attempt to go behind the charts, graphs and figures and tell something of the individuals involved in clinical trials and how they came to be there. Thanks to the generosity of spirit of two trial participants – real people who have been on trials – the experience of a clinical trial can be shared.
Surry Hills scene / Tim Baxter
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“DL”, 59 and Warren, 64 have never met. DL of European descent shares a home in cosmopolitan Surry Hills with her partner, John, and his custom motorcycle. Warren, an Aussie bloke, runs a successful consulting business from the leafy suburb of Balmain and hangs out at Pearl Beach on the weekends, where his neighbours say he’s the most active person they know.
Back in the early 1990s the treatment option for hep C was “same same”. Specialists hadn’t yet discovered that treatment response related to genotypes and standard mono-therapy was rolled out to everyone.
Warren must have learned a trick or two during his years as a secondary school maths teacher. But just before turning 30, he discovered there’s no neat formula for recovery after a major road traffic accident. A head-on car crash led to a series of blood transfusions and operations, including an above-knee amputation of his right leg.
Warren, struggling with side effects, managed to complete 24 weeks while holding down a highlevel job and travelling 570km return trips from his home to hospital. But treatment didn’t work and his positive hep C status remained.
Neither DL nor Warren expected the intrusion of the hep C virus into their lives. The roads they were travelling were rocky in their own ways. But they each picked themselves up and got on with things and hep C became the place where their stories merge. Warren and DL have never met but they share a history; a struggle with the virus that many of us can relate to. They also share an experience with medical science that most of us know little about.
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Ten years later he geared up for a second go. This time, a regime of pegylated interferon and ribavirin took him 48 weeks to complete. But it was worth it: while on treatment, for the first time in a long time, Warren’s bloods showed he was hep C negative! Unfortunately a month after treatment came the confirmation of something he had already sensed wasn’t right – he had relapsed and the virus was once again detectable in his blood.
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Greg Dore & Becky Hickey / Tim Baxter
Balmain scene / Google Images
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DL, some years later and in another part of town, was experiencing sudden high-rise iron levels. Her doctor was thorough in monitoring her blood. She credits this thoroughness as what led her down the treatment trial path. This path eventually took her to St Vincent’s liver clinic for a fibroscan. These painless procedures are now usually used instead of biopsies. DL describes her fibroscan as “painless and easy, just a little tapping on your side,” calling it “Thumper the bunny”.
DL remembers saying to the nurses tearfully when she left the clinic, “Don’t forget about me!”
Sadly, her “Thumper” showed she had cirrhosis and DL made what she considers an easy decision: to go straight onto standard combination treatment (interferon and ribavirin).
Having hep C virus sounds like we all have this one thing that’s wrong with us, but there are so many things that make us different: our genotype, how long we’ve had hep C, how badly the virus has affected our liver, how much alcohol we drink now (and in the past), and the way our bodies respond to treatment.
It wasn’t easy, due to the interferon side effects. “I was wandering around at home forgetting why I was in the living room, for example, but at the same time, I had all sorts of buried memories from the past that were resurfacing.” After four months she was taken off treatment as a non-responder. “My stomach hit the ground when they told me that.”
Life with hep C threw these two very different lives onto the same winding path that eventually led to separate clinical trials headed up by Professor Greg Dore. Clinical trials are very important because, as both Warren and DL’s experience shows, treating the virus can be complex.
Even our temperament and how well we deal with adversity can impact on our hep C treatment experience. Warren and DL were lucky. They were selected as participants on two of the most exciting hep C treatment trials this decade.
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Warren’s decision to undertake a clinical trial was both courageous and pragmatic. He checked the odds of people with his treatment history getting access to new treatment, whether it might work for him, whether it would become available on Medicare and he calculated it could be another seven years before this chance might happen again. He consulted with his partner, “Something I believe anyone undergoing any kind of treatment ought to do because it affects them too”. She was supportive. Approaching the clinical trial with a strong problem-solving nature to his personality and many years of a proactive, healthy low-fat diet, exercise and minimal alcohol behind him, Warren signed up. At the time of writing, he is halfway through the 12 weeks of two pills a day, morning and night. He says he has been only slightly inconvenienced by side effects of treatment, and talks of a mild fatigue that plateaued after the first week. He has had a speedy reduction in his viral load, watching it plummet from “the millions” to “just a few hundred” and with his last test showing the virus was undetectable! He remains optimistic but a little guarded about his prognosis. “I know it all depends on what happens when the treatment stops.” Some might be deterred by the idea of a yet-tobe-proven treatment, but not DL. “I was sitting at home with cirrhosis of the liver. What did I have to lose? I wasn’t suspicious or worried at all. I was saying to myself, ‘Bring it on’.” DL believes that Professor Dore gave her such a great opportunity and is “eternally grateful” for his dedication to find alternatives to interferon and his absolute passion to “fix this virus up”. From September to December last year, DL took two combination therapy tablets morning and night as part of the three-month trial. “No injections, no flu symptoms, no memory problems ... it was ‘simple as’,” DL says.
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She worked hard during treatment to maintain a positive attitude, “meditating daily on things to be grateful for”. One of the things DL expresses deep gratitude for is the quality care provided by staff at the liver clinic. “Things like the lack of ‘us-and-them’ uniforms ... staff usually just wear sandals and shorts ... and the thoughtful care and kindness shown by my nurses, Bec and Ali, and my dietician, Alicia, who kept me supplied with the Sustagen that helped me keep my weight up during the trial.”
He checked the odds of people with his treatment history getting access to new treatment, whether it might work for him, whether it would become available on Medicare and he calculated it could be another seven years before this chance might happen again Apart from weight loss, the only other treatment side effect was something that may have been more of an issue for her husband, “Jay”. According to DL, “I had logorrhoea ... look it up ... I talked and talked and talked ... a lot!” Initially a bit worried her mood was becoming overly elevated, she was reassured by Professor Dore that her effusiveness (or logorrhoea) was likely due to improving health – in retrospect could there be a lovelier sign that both body and mind were becoming well? On 20 February, DL received the news that the eight-week post-treatment bloods revealed a good result; better than the four-week tests. She feels the 12-week post-treatment tests will be even better. Since DL finished the clinical trial old friends have noticed that she looks “ten years younger!” She is now full of plans that she’s talking (a lot) to her husband, Jay, about. Receiving the results of the treatment trial has changed things on many levels, giving her confidence to think about tackling other longstanding health issues. The daily gratitude meditation practice she began during the treatment trial has put her in touch with life’s good fortune. When the health issues are fully sorted, she and Jay plan to head up to Lightning Ridge for a few weeks to try their luck opal mining.
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Fibroscan images / Tim Baxter
Warren’s trial is an international trial comprising triple combination therapy, which is unique because, like DL’s trial, it is one of the first drug therapies that does not rely on interferon. Instead the daclatasvir (DCV), asunaprevir (ASV) and BMS-791325 do the work that interferon has failed to do for so many people with the hard-totreat genotype 1.
Fibroscan images / Tim Baxter
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Back to Warren. He says if he clears his hep C through this clinical trial he doesn’t reckon his lifestyle will change that much, he’s been living with hep C for 36 years – which is longer than he has lived without it. Never letting the virus get in the way of having a good life, Warren has work that satisfies – as well as his consultancy business, he’s the current President of Hepatitis NSW – and he has no shortage of loving relationships around him. But you can’t know his story without hoping that treatment is successful third time around and he can finally be rid of it.
Let’s hope that goal works out. It’ll make for potentially a lot more rich and varied stories out there with, hopefully, happy endings! • Charlie Stansfield is a freelance writer who regularly contributes to Hep Review magazine. She is a counsellor and coach. Contact her on violettara@yahoo.com
All over the world clinical trials are currently taking place, testing out combinations of new drugs.
Warren’s treatment journey on the trial is comprehensively detailed in his blog entries in The Champion e-newsletter.
The next five years should see a simplification and reduced duration treatment for all genotypes. It is also hoped that newer treatments will have fewer side effects.
If you were interested in volunteering for a clinical trial the first step would be to contact your liver clinic for assessment.
Hepatitis Australia’s treatment goal is to make interferon-free treatment available to all Australians living with hep C by 2018.
Postscript: DL has had her final blood test and is ecstatic – she’s cleared her hep C!
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editorial
25 years and counting
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n April 1989, the journal Science ran two articles with long names – “Isolation of a cDNA clone derived from a blood-borne non-A, non-B viral hepatitis genome” and “An assay for circulating anti-bodies to a major etiologic virus of human non-A, non-B hepatitis” – and even longer lists of contributors. For those non-scientists among us, those titles might not immediately reveal just how important these articles were. In practice, they were the first time that the hepatitis C virus was formally identified, where previously discussion had simply referred to ‘non-A, non-B hepatitis’. Vitally, this discovery led to the screening of the blood supply, which Australia was one of the first countries in the world to introduce, in February 1990. Despite the outcry and initial research limitations generated by the patent of US research company Chiron on the newly named hepatitis C virus (HCV), this breakthrough led to the development and roll-out of antibody tests, and to people receiving diagnoses as being hep C “positive”. In turn, the growing number of people living with hep C sought information and support, and began to organise as a community. In fact, it was only 30 months from the publication of these articles in the US, to the formation, in 1991, of the NSW Hepatitis C Support Group, which later became known as the Hepatitis C Council of NSW, and is now Hepatitis NSW. One of the first services to be set up was the then Hepatitis Helpline (now Hepatitis Infoline). This edition of Hep Review will hit the streets almost exactly 25 years after the formal identification of hep C. Obviously a lot has changed since then, especially with respect to treatments. From the early days of interferon, to pegylated interferon and ribavirin, and more recently to the PBS listing of telaprevir and boceprevir for people with genotype 1, things look very different today than in April 1989.
It is no secret that we are standing on the cusp of even bigger, potentially revolutionary, changes to treatment, with a range of new, all-oral, direct acting antivirals (DAAs) in the process of seeking approval for use in Australia (with some, like sofosbuvir, already approved in the US, Canada and Europe). These treatments could, for many people, remove the need for interferon altogether, as well as increasing cure rates and reducing treatment duration. But there are challenges too. The first will be in ensuring that as many people as possible gain access to these treatments. Given their cost, there is a real risk that the Government will restrict access to the new treatments for budgetary reasons. This is something that Hepatitis NSW, and other groups, will be actively working on this year to avoid. We need as many people with hep C to be able to access these life-saving therapies as soon as possible. Another real, and just as serious, risk is that people who would benefit from treatment now, including some who may have already developed some liver damage, delay treatment with the potential consequence of unnecessarily damaging their livers further. Existing treatments, especially following the introduction of telaprevir and boceprevir, can and do work for most people. The best way to know whether treatment is right for you, right now, is to have your liver assessed regularly, and to consult with your doctor. You can of course always call the Hepatitis Infoline on 1800 803 990, or talk to one of our HepConnect workers, people who have already undertaken hep C treatments, to help you consider your options. Twenty-five years on since the first public identification of hep C and much has changed, with the prospect of more and perhaps bigger changes to come. Having someone you can talk to about your hep C has remained constant. We urge you to talk again with us now, and discuss having your liver health assessed sooner rather than later. • Hepatitis NSW Hepatitis Infoline: 1800 803 990
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Other readers want to hear your story
Letters
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Australian news
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World news
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Features Telling the tale of two trials
“I have received your valued publication for many years. It continues to inform me, keeping me up-to-date with options for treatment. It helps me emotionally as I read the stories of others. I have articles that I have cut out and kept.” RP, Tasmania.
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Philip Seymour Hoffman’s death in line with heroin use trends
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Complementary and alternative approaches to hep C treatment 24 Hepatitis NSW Cheryl Burman Award
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Tattoo operators warn of dangers in new licensing for tattoo parlours
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Image / Google Images
Hepatitis rates climbing among Aboriginal population 30
Hep Review magazine is a lifeline for many people, linking them to news, information, views and stories. We want the voice of people with hepatitis to ring loudly through the magazine. Please consider sharing your story. We can send you a guide to writing your story. Published stories attract a $50 gift card payment. Your contact details must be supplied (for editorial purposes) but need not be included in the printed article. Articles should be roughly 400 words or 800 words, handwritten or typed. • Further conditions apply. To submit your story, please send to Paul Harvey, Hepatitis NSW, PO Box 432, Darlinghurst NSW 1300. For more info contact pharvey@hep.org.au or 0412 885 201. Also see our call for photos on page 46.
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
The ABC of looking after your health: AKA, what is health literacy?
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ACT prison needle exchange warning
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What a year for harm reduction in North America 40 Obituary: Philip Seymour Hoffman
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Going Viral reaches out across NSW
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My story Murray’s story: Luckiest guy in the world
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Mandi’s story: What price treatment?
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Number nine for “C”
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Research updates Hep C under-reported on death certificates
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Sleep disturbances common with hep C
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COSMOS results are out of this world
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Coffee, chocolate linked to improved livers
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Silymarin has direct anti-HCV activity
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Barriers to hep C care in OST settings
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Hep C survives up to six weeks at room temp 61 Regular features Editorial – 25 years and counting
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Hep Chef – Date and ginger loaf
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Hello Hepatitis Infoline – Staying safe inside
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Reader survey form
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Membership form
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Pharmaceutical treatment for hep C
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Complementary medicine
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Support and information services
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letters
letters There’s a war raging
The Anonymous People is a new feature documentary film that tells the story of the over 23 million Americans living in long-term recovery from addiction to alcohol and other drugs. It has ignited new energy in a grassroots public recovery movement by bringing the faces and voices of the leaders, volunteers, corporate executives, and celebrities in recovery to the forefront.
Our fellow humans are being harmed and even dying, their long endured struggles fading into the swirling tide of budget cuts and political turmoil; people who fight bravely in the trenches of our towns and cities, clinging to the hope that someday common sense and true human rights will prevail.
Already, more than 55,000 people have gathered to watch the film and discuss how they can “join the movement” at community events worldwide. “Collectively, we can change public perception and ultimately the public response to the addiction crisis,” said the film’s director, Greg Williams, who partnered with Faces & Voices of Recovery to create the brand new advocacy engagement campaign, www.manyfaces1voice.org
For all the rhetoric about our forebears fighting overseas battles for allegiances which supposedly secure our freedom, nobody outside humble living room coffee tables seems to mention the impediments placed on our freedoms and rights at home constricting us more and more each day. While we all may not identify with the burdens borne by drug users, there are certainly some things we all have in common. Whether it’s our decision to alter our reality by drinking alcohol, smoking a joint or, Prime Minister forbid, injecting some heroin, we all should have the right to explore the expanses of our consciousness in the ways we want (given it doesn’t harm others). Our very existence is fleeting fast and it is our right, nay, our duty to enjoy this ride that we, like it or not, are all strapped in on together as we hurtle through space on this big rock. • Gul, QLD
• If you have questions about the event, please contact Jeremiah Gardner at jjgardner@hazelden.org
Just do it My name is Shayne and up until about eight months ago I had bad hep C. It took me about seven years to get the ball’z up to do treatment or even think about it. Now I’ve done it and I beat my hep C. I feel better off all together and there’z not one day that I regret. The only thing I regret is not doing it sooner. So thank you for the read and help. My advice – “just do it.” • Shayne, NSW Whether you’ve had a good treatment experience or not, we’d like to hear your story. Write and tell us how you’ve gone.
Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, lifestyle education, monitoring of side-effects and referrals to other services. You will just need a referral from your local GP to attend the clinic. This is a great opportunity to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today. • For more info, please contact Katherine McQuillan on 6330 5866 or 0407 523 838
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Image via Google Images
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letters
news
Image courtesy of Google Images
My methadone question What options are there for me if I feel I have problems with my methadone clinic? • “M”, NSW Complaints should be first made to your prescribing doctor, then your clinic manager. If you are not happy with their response then contact the Methadone Advice and Complaints Service (MACS). Also, call NUAA if you need any help. MACS Hotline: 1800 642 428 (Mon-Fri, 9.30am-5pm) NUAA: 8354 7300 or 1800 644 413
Five minutes of Fincol Here in Goulburn, most inmates I talk to about cleaning fits think that by doing 3x water rinses, 3x Fincol rinses then 3x water rinses, they are killing the hep C virus. They are forgetting they’ve got to take the fit apart and soak it for 5 minutes. I think a lot more has to be done about educating inmates to use Fincol properly and this will help reduce the spread of hepatitis in jails. • “Anon”, Goulburn.
alcohol laws UNDER DEBATE
New South Wales – The Government’s attempt to introduce mandatory minimum sentences for a range of alcohol-fuelled violent offences looks set to fail. But Labor is planning to amend those laws in the Upper House, so a minimum sentence would only apply to one new offence of “gross violence” instead. [We believe this will reduce the negative impact of the originally proposed new laws on people who use illicit drugs.] Labor leader John Robertson says the ALP consulted widely before proposing the amendments. “Pass the best possible laws, grounded in reason, informed by the evidence. Labor will seek to amend this Bill to improve it in the Upper House. We want this Parliament to get it right,” he says. The Greens’ David Shoebridge says his party will also vote for the change, which he describes as the lesser of two evils. “Labor’s proposals do less damage to the judicial system than the Government’s,” he says. Their support gives Labor the numbers to pass its amendment. • Abridged from abc.net.au (5 Mar 2014) http://tinyurl.com/kmtvpr2
St Vincent’s viral hepatitis clinic St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, Sydney, offers treatment for hepatitis. Featuring a Fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment. • For further information, please contact Dianne How Chow, phone: 8382 3607 or email: dhowchow@stvincents.com.au Image courtesy of Google Images
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clinic may have given hep with hair
dentist Patients possibly got hep
New South Wales – People may have been exposed to heps B and C and other blood-borne infections at a central Sydney hair clinic with poor hygiene practices, the NSW government warns.
New South Wales – Almost 1000 patients treated by a Sydney dentist over the past decade may have been exposed to infectious diseases because medical equipment was not properly sterilised.
Sydney’s southeastern public health unit is urging anyone who was treated at Dr Angela Campbell’s Macquarie Street surgery between December 2010 and February 2013 to have tests for the blood-borne diseases. “The overall risk to an individual patient is very low,” health unit director Professor Mark Ferson said. “As a precaution, we are recommending that former patients attend their local general practitioner for screening for hepatitis C, hepatitis B and HIV infection.” The NSW medical council suspended Dr Campbell from practice in February this year. Her clinic had “poor infection control practices,” such as ineffective cleaning and sterilisation of surgical equipment. “Patients of the practice could have been exposed to blood-borne viruses,” Prof Ferson said. • Abridged from news.com.au (11 Dec 2013) http://tinyurl.com/mvpfosb
A public health investigation of dental practices operated by Nuha Kamil at Castlereagh St in the city and Alfred St, North Sydney, has found evidence of poor infection control, including problems with the cleaning and sterilisation of reusable dental instruments used at the surgeries. About 980 patients received a letter from the South Eastern Sydney Local Health District on 6 January advising them there was a “low risk’’ they had been exposed to hep B or C if they “underwent certain dental procedures’’ at the clinics between August 2002 and August 2013. NSW Health said while some patients may have been exposed to a blood-borne virus, the overall risk to patients was very low. The investigation was launched after the NSW Dental Council and the NSW Health Care Complaints Commission received complaints about Dr Kamil. • Abridged from smh.com.au (17 Jan 2014) http://tinyurl.com/mdta5ch This article shows how people who feel there is something wrong and who contact the Health Care Complaints Commission can really make a difference.
Hep C in Australian medical settings Above are articles describing risk situations for people contracting hep C in medical settings. The number of people who contract hep C medically in Australia is incredibly low. Australia’s blood supply has been screened since 1990 and, overall, we enjoy world-class standards of infection control. The bottom line is that you are at very low risk of contracting hep C in Australian health settings.
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Our online version of Hep Review can be found via www.issuu.com/hepatitisnsw and contains live links to the various sources shown in blue text at the end of articles. They’re another great reason to go online for your Hep Review magazine. You can also view the magazine via www.hep.org.au
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news
BIT225 could work in all HCV strains
Through the Ages New South Wales – It has remained a constant lightning rod in the battle against drug use and dependence in Sydney over the past decade. The Sydney Medically Supervised Injecting Centre first opened on Darlinghurst Road, Kings Cross, amid a storm of controversy 13 years ago. At the time, Sydney was in the grip of a heroin epidemic and when the Carr Labor government announced the trial of Australia’s first “shooting gallery” the media glare was intense.
New South Wales – Shares in Biotron grew 10% after the company announced independent research suggesting that lead compound BIT225 could be effective across all six major strains of hep C. A study published in Antiviral Research demonstrates that BIT225 is active against HCV genotypes 1, 2, 4, 5 and 6 using an in vitro cell culture assay.
Today, the now permanent facility operates in quieter circumstances and remains the only centre of its kind in the southern hemisphere.
Biotron, based in North Ryde, has previously demonstrated that BIT225 is active against genotypes 1 and 3 but has not yet had a chance to trial the compound in patients with other strains of the virus.
Medical director Marianne Jauncey said recent renovations, the first in the centre’s history, had increased its capacity to conduct research and continue support services. She said the clientele had progressively become older, a larger proportion were homeless and more were using prescription drugs over heroin. “We tend not to see young people as much as we used to,” she said. “The biggest shift was when our trial status was overturned in 2011 and we became permanent. It allowed us to operate so much more effectively.”
“This independent study further validates our plan to progress BIT225 as a new ... therapeutic for hepatitis C,” Biotron Managing Director Dr Michelle Miller said. • Abridged from lifescientist.com.au (28 Nov 2013) http://tinyurl.com/k63d3fw
• Abridged from pressdisplay.com (26 Jan 2014) http://tinyurl.com/342ml
Do you live in Sydney’s Eastern Suburbs and have hepatitis? Are you looking for treatment? The Prince of Wales Hospital Gastrointestinal and Liver Unit, in Randwick, Sydney, specialises in treating a broad range of liver-related conditions, with a large focus on hepatitis B and C. The nursing staff coordinate all aspects of patient care for people with chronic hepatitis including education, antiviral therapy, follow-up, medical appointments, interdisciplinary referrals and Fibroscan assessments. We also participate in a range of clinical trials offering new and innovative treatments to our patients. Other health care professionals that complement our service include a Psychiatrist,
Clinical Psychologist, Dietician, Social Worker, and Clinical Research Physicians. There are daily outpatient medical clinics so waiting times for patients are minimal. For more information, phone Shona on 9382 3800 or email shona. fletcher@sesiahs. health.nsw.gov.au
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Benitec cleared for hep C trial
Gregg Allman READY TO FAREWELL IN AUST
New South Wales – Benitec Biopharma has been granted approval to proceed with a trial of its single-injection hep C treatment candidate TT-034.
Australia – When the legendary Allman Brothers Band visit Australia in April, it’ll be their final tour.
Benitec, based in Balmain, was advised by the US FDA that it can conduct the trial, after reviewing the Investigational New Drug (IND) application the company filed in early December. “We are very pleased with this outcome, which establishes Benitec as a clinical-stage company,” Benitec Biopharma CEO Peter French said. TT-034 is a [drug] designed to treat hep C with a single injection. It is based on gene-silencing technology known as DNA-directed RNA interference (ddRNAi), originally developed at the CSIRO and then exclusively licensed to Benitec. The treatment was developed by US-based Tacere Therapeutics, which took out a licence to the ddRNAi technology from Benitec in 2006. • Abridged from lifescientist.com.au (15 Jan 2014) http://tinyurl.com/lwvm4om
Speaking from his home, American rock and blues stalwart Gregg Allman said, “We are so excited about coming to Australia, man. We are just chomping at the bit.” The tour will likely be the band’s last. “This is the last one for the band. We’ll hang it up after this year. Enough is enough,” he said. Gregg hit the road with his brother, Duane, playing clubs throughout the US south, from the age of 17. He said, “We played 6 nights a week, 5 sets a night, 45 minutes a set, for $111 a piece, each week. Even in 1966, man, you cannot make ends meet on $111 bucks. Somehow we lived through it, though. We didn’t make any money in the music business until 1972. I remember in 1974, I was a millionaire.” Gregg doesn’t shy away from the toll that drugs and alcohol have taken on him, “Drugs should’ve taken me a long time ago.” “Now, I feel good, I feel well. I have energy, I have inspiration. I had cirrhosis, hep C and cancer, all three, in my liver. For them to take that out and put in another 29-year-old female liver, that’s miraculous.” • Abridged from abc.net.au (21 Feb 2014) http://tinyurl.com/kkxrqs3
Resource OF THE MONTH Hep C posters set
Based on our set of fitpack stickers, these new posters are available as a set or individually. They include information on the Hepatitis Infoline, NSP, injecting equipment risks and tips, PCR tests and hep C treatment. Anyone can phone the Hepatitis Infoline to order copies. Healthcare workers can use our Faxback order form to get multiple copies or sets. Hepatitis Infoline – 1800 803 990 Faxback order form: http://tinyurl.com/7kctp25
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New cure potential excites doctors
Hep linked to jump in fatalities
Australia – More than 200,000 people in Australia could soon be cured of hep C, thanks to new drugs that have sparked excitement among liver specialists. The drugs have a 90% success rate for the most common form of hep C and have few side effects.
Australia – Deaths from liver cancer have almost doubled in a decade, with one expert saying the problem has reached “epidemic” proportions. Rising rates of obesity and a spike in viral hepatitis infections late last century have been blamed for the rise, which has seen liver cancer deaths among Australians jump from 778 in 2001 to 1423 in 2011.
The new pills, which are taken for 12 weeks, have been approved in the US and Europe and are expected to be available in Australia and New Zealand within a few years. “It is one of the greatest turnarounds in clinical medicine that we have seen in decades,” says Prof Greg Dore of the Kirby Institute and St Vincent’s Hospital, Sydney, a speaker at the 2014 meeting of the Asian Pacific Association for the Study of Liver in Brisbane. “Fewer than 2% of those diagnosed receive treatment each year,” says NZ Professor Ed Gane, a transplant specialist at Auckland City Hospital. “Around 230,000 people in Australia and 50,000 in NZ are living with the disease.” These people are at increased lifelong risk of cirrhosis, which can lead to liver failure or cancer. They can also develop non-specific symptoms including extreme tiredness or lethargy.
Australian Liver Association chairwoman Amany Zekry said the problem was largely preventable, with cancer the result of chronic liver disease, frequently caused by heps B and C, and obesity. Associate Professor Zekry addressed the Asian Pacific Association for the Study of the Liver meeting in Brisbane in March on the growing burden of liver cancer in Australia. She called for better awareness and improved strategies to increase screening in at-risk groups. “With hepatitis B and C infections, new treatments are offering exceptionally high rates of cure, which will help reduce rates of liver scarring and, hopefully, the burden of liver cancer,” Prof Zekry said. • Abridged from pressdisplay.com (15 Mar 2014) http://tinyurl.com/342ml
“About 70-80% of affected Australians had been diagnosed, but the diagnosis rate in NZ was low,” he said. “It may be possible to eradicate hep C in both Australia and New Zealand within the next 20 years.” • Abridged from news.ninemsn.com.au (12 Mar 2014) http://tinyurl.com/kb2xjnh
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!
Hep Review magazine
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Edition 84
June 2014
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Image courtesy of Google Images
news
that magic combo
Prison needle exchange rare despite evidence
USA — Clinical trials show that a combination of pills, one still in the experimental phase and one that was just approved for the US market, are very effective at curing hep C, researchers say.
Canada – Clean needle distribution in prisons is “poor and patchy” around the world, despite evidence that it reduces the spread of infectious diseases and does not increase drug use, an international expert told a panel discussion in Toronto, Ontario.
The New England Journal of Medicine published the latest data from a phase II clinical trial on daclatasvir (Bristol-Myers Squibb) and sofosbuvir (made by Gilead Sciences and approved in the US in December 2013.)
“There’s a big gap between what is being recognised at the UN level and what is going on, down on the ground,” said Heino Stöver, of the University of Applied Sciences in Frankfurt, Germany.
A full 98% of participants were considered cured, showing no detectable virus in their blood three months after the treatment ended.
Although the United Nations Office on Drugs and Crime and the World Health Organization (WHO) both advocate for needle and syringe exchanges for inmates, only 60 prisons out of more than 10,000 worldwide have launched programs since Switzerland set up the first one in 1994, said Stöver. Switzerland, Spain, Kyrgyzstan, Moldova, Romania, Portugal and Luxembourg all have needle exchange programs in at least one prison.
Results were similar for people with the virus genotype 1 and those with genotypes 2 and 3. The study was also the first to show that hep C could be cured without the use of ribavirin. • Abridged from skynews.com.au (17 Jan 2014) http://tinyurl.com/kjzh6ft It’s not yet known whether Gilead and BristolMyers Squibb will allow the two drugs to be marketed together.
A WHO review of 55 European prison needle exchange programs found no reported increase in drug use and no negative unintended consequences. No needles were used as weapons. • Abridged from cmaj.ca (10 Dec 2013) http:// tinyurl.com/k9yl5y3
Royal Prince Alfred Hospital liver clinic Royal Prince Alfred Hospital, Camperdown, Sydney, offers specialist services for people with liver diseases including viral hepatitis. Daily medical and nursing clinics provide liver health checks, fibroscan, IL28B gene tests, treatment assessment and management including access to newer therapies via clinical trials. Image, source unknown.
The clinic also provides specialist care and treatments for people with advanced liver disease and liver cancer, and is home to the NSW Liver Transplantation Unit.
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Do you want to know more? Please contact the following specialist nurses: Hep C – Sinead Sheils 9515 7661 or Sue Mason 9515 7049 Hep B – Margaret Fitzgerald 9515 6228 Liver Transplantation – Margaret Gleeson 9515 7263 or Fiona Burrell 9515 6408 Liver Cancer – Barbara Moore 9515 3910
www.hep.org.au
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news
AbbVie Cures 99% USA – AbbVie’s combination hep C therapy cured almost all patients in a late-stage study, moving the company closer to marketing a treatment that will compete with Gilead Sciences (sofosbuvir), Janssen (simeprevir) and Bristol-Myers Squibb (daclatasvir). In a trial of 419 patients, AbbVie’s as-yetunnamed drug cocktail cured 99% of those given it after 12 weeks, regardless of whether they added the older booster medicine ribavirin, the North Chicago-based company reported at the Conference on Retroviruses and Opportunistic Infections in Boston. AbbVie said it will seek US approval this quarter AbbVie’s combination consists of a protease inhibitor called ABT-450 used with the booster ritonavir, an NS5A inhibitor called ABT-267 and ABT-333, a non-nucleoside polymerase inhibitor.
Montreal gets four injection facilities
Canada – Montreal will soon be home to four supervised injection sites for people who inject drugs. Richard Massé, the director of Montreal Public Health, argues that while the experiment may seem expensive, the quality of life will improve for the people who live near the sites, and for the drug users. Massé said the social gains will surpass the cost if people consider the complications associated with injection drug use – hep C, HIV and overdoses, among others. Massé said, according to a study commissioned by the city’s public health office, that the service would pay for itself after four years.
It is expected that the combination will garner sales of $1.4 billion in 2016, making it the company’s second-biggest drug, according to Jeffrey Holford, an analyst at Jefferies International in New York.
Three permanent centres, each with an injection room supervised by a nurse, will be implemented. A fourth, mobile centre will work to reach people in other areas that are particularly affected by intravenous drug use.
• Abridged from bloomberg.com (4 Mar 2014) http://tinyurl.com/k8vb57a
Massé said personnel won’t administer injections and no drugs will be sold on site. However, medical services will be available in case of an overdose. • Abridged from cbc.ca (11 Dec 2013) http:// tinyurl.com/l844trn
Liverpool Hospital liver clinic We offer multidisciplinary specialist services for people in South Western Sydney who have hep B, hep C or liver cancer and other liver disease. Interpreters and multicultural support are available for people who attend our clinic. We offer Fibroscan® to assess your liver for damage without a liver biopsy. After assessment you’ll receive a detailed discussion about the best treatment options for you. We also offer services for pregnant women with hep B or C. We offer all new available therapies for hep C as well as access to new therapies through our participation in clinical trials.
Our DVD about hep C treatment, and our DVDs and brochures about hep B, may help you better understand these conditions. These are also available through YouTube: http:// tinyurl.com/nsyj2e9 • For more information, phone: 02 8738 4074 or email: gastroliver.liverpool@sswahs.nsw. gov.au
Hep Review magazine
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Edition 84
June 2014
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news
sofosbuvir gets europeAN go-ahead
US approves sofosbuvir
UK – Gilead Sciences’ hep C drug sofosbuvir has been given the green light in Europe.
USA — US regulators have approved Gilead’s sofosbuvir as a treatment for hep C.
The once-daily medical drug provides the first all-oral treatment option for up to 24 weeks for patients unsuitable for interferon.
The once-a-day pill is the first approved to treat certain types of hep C without the need for interferon injections.
John Martin, Gilead’s chief executive, said the approval is an important step forward in the management of hep C in Europe, “enabling many more patients the opportunity of cure”. He said that “we are committed to working with local governments and health systems to ensure sofosbuvir is made available” and that in the UK the drug had already been evaluated by the National Institute for Health and Clinical Excellence and the Scottish Medicines Consortium.
Most patients will be treated with the $7000-a-week drug for 12 weeks, resulting in a total price of $84,000.
Graham Foster at the Queen Mary University of London said that, unlike many chronic diseases, hep C can be cured, but many patients, for a number of reasons, have not currently achieved a cure and often progress to end-stage liver disease or liver cancer. Now, “with high cure rates across a broad range of patients and a short duration of therapy, sofosbuvir is a very welcome therapeutic advance that will increase the number of patients who can be treated and ultimately cured”. • Abridged from pharmatimes.com (20 Jan 2014) http://tinyurl.com/nt528ct
Gilead said sofosbuvir can be used in combination with ribavirin, an older antiviral pill, for patients with genotypes 2 and 3 infections. For patients with genotype 1, sofosbuvir must still be used with both interferon and ribavirin. The drug’s approval was supported by several studies showing that it helped to eradicate the virus in significantly more people, with fewer side effects. Sovaldi is the first in a new class of medications known as nucleotide analogue inhibitors, or “nukes”, designed to block a specific protein that the hepatitis C virus needs to copy itself. Analysts, on average, have forecast Sovaldi sales of $1.9 billion next year, according to BMO Capital Markets. • Abridged from reuters.com (6 Dec 2014) http://tinyurl.com/m87aacn
The multidisciplinary Liver Clinic at St George Hospital, Kogarah, Sydney, supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials.
Image via Google Images
St George Hospital liver clinic
For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 or lisa.dowdell@sesiahs. health.nsw.gov.au
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news
the Price is Right?
new image for Hep C
USA – Eyebrows went up recently when Gilead announced the per-pill price for sofosbuvir would be $1000. Over a 12-week treatment period, that amounts to $84,000 – without counting the cost of other medications that would be used with sofosbuvir.
USA – Scientists at The Scripps Research Institute have produced a detailed picture of a key part of the hep C virus which could aid in the search for a hep C vaccine.
Speaking from the University of Chicago Medical Center, Dr Nancy Reau said there was often a lot of shock at the price tags with new medicines. But the price tag has to be weighed against the benefit, she and colleague Dr Don Jensen argued in a recent article in Hepatology. Hep C treatment is measured with what’s called the sustained virologic response, or SVR – no detectable virus 24 weeks after the end of a course of treatment. A person whose treatment results in an SVR has less than a 1% chance of relapse, history shows, and to all intents and purposes is cured.
Scripps Research Institute scientists have spent the last six years coming up with a detailed picture of the virus’s protein structure. The virus uses this protein to infect liver cells. Scripps immunologist Mansun Law said the goal is to develop better candidates for a hep C vaccine.
HCV protein / Scripps
The other recently approved medication, Janssen’s simeprevir, is being priced at $66,360 for a course of treatment, again without the cost of other medications.
Hep C is one of the leading causes of cirrhosis and liver cancer. It can be treated, but currently there’s no vaccine.
“So with this new development and this new data, now we know exactly how to design new molecules that may produce a better neutralising antibody response than what we have already tested,” Law explained.
• Abridged from medpagetoday.com (18 Feb 2014) http://tinyurl.com/mgmpttt
• Abridged from kpbs.org (2 Dec 2013) http:// tinyurl.com/mrljayo Hep C: the bluebottle virus?
Paediatric viral hepatitis clinic
Hep C and hep B can be passed on from pregnant mother to baby and occurs in unknown numbers in children.
Children with hep B and hep C are usually well and often unaware of their infection. Our Paediatric Viral Hepatitis Clinic will provide early diagnosis, monitoring, and in some cases treatment of children with these infections. Assessment and regular follow-up is essential to provide optimal care for these children to reduce the risk of significant liver disease in later life. For information, contact Brooke Andersen at the Children’s Hospital Westmead, Sydney, on 9845 3989 or brooke.andersen@health.nsw.gov.au
Image via Google Images
Hep Review magazine
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Edition 84
June 2014
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news
Arab States deport 1000 with hep
David Kwiatkowski given 39 years
Gulf States – The Gulf State governments terminated the services of 2233 expatriate employees and sent them back to their countries in 2013 as they were found to be medically unfit, reports Al-Watan Arabic daily quoting the Assistant Undersecretary for Public Health Affairs in the Ministry of Health, Dr Qais Al-Duwaeri.
USA — A former hospital technician who caused dozens of hep C transmissions when he injected himself with syringes of pain killers that were then used on patients was sentenced to 39 years in prison.
Al-Duwaeri explained the government did not renew the visas of those employees because 495 have hep C, 670 have hep B, 171 have HIV, 35 have malaria, and 862 have tuberculosis. He said the government is serious in its bid to protect the health of citizens and expatriates. He said the Gulf countries have started the implementation of the automated system for the medical tests of expatriate employees to prevent the migration of those suffering from infectious diseases from one country to another. He added the ministry and its interior counterpart have coordinated their efforts to guarantee the successful implementation of the system in order to protect public health. • Abridged from arabtimesonline.com (27 Feb 2014) http://tinyurl.com/mseb9au
David Kwiatkowski, 34, admitted to stealing the drugs and leaving used syringes for hospital use for years despite knowing he was infected with hep C. Kwiatkowski worked as a travelling medical technician in at least eight states for nearly a decade before he was arrested last year following a rash of unexplained hep C cases at Exeter Hospital in New Hampshire. So far 45 people have been confirmed infected, including 32 in New Hampshire, six in Kansas and seven in Maryland, prosecutors said. Kwiatkowski admitted he used syringes to obtain fentanyl at least 20 times in Kansas, 30 times in Georgia and about 50 times at Exeter Hospital. In sentencing Kwiatkowski, Judge Laplante said the defendant’s conduct went beyond recklessness, verging on “cruelty” or “hostility”. He said he sentenced Kwiatkowski to 39 years rather than the 40 sought by prosecutors “to give you something to appreciate about human beings,” namely that people have a capacity for compassion. • Abridged from reuters.com (2 Dec 2014) http://tinyurl.com/k8q8sp9
Lismore liver clinic We provide a free public clinic specialising in hepatitis C and B. The clinic is run by nurses working with specialist doctors to provide assessment, information and treatment. If you have hepatitis C or B please come and see us. We can provide free access to a dietician for nutritional support and also to a counsellor to Image / Mark Fuller assist you prepare emotionally for treatment and identify the social supports you will require. Please get in touch with us on 6620 7539
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news
Devon Nicholson cleared of virus
Free trade in life and death
Canada – For former Canadian pro-wrestler Devon Nicholson the news could not have been more welcome. In December, he was told he’d cleared the virus that had sent his life into a tailspin.
Europe – If you have hepatitis or other serious ailments, it’s worth your while to follow the negotiations on the Trans-Pacific Partnership agreement. It’s really a matter of life and death. For the TPPA can cut off the potential supply of cheaper generic medicines that can save lives, especially when the original branded products are priced so sky-high that very few can afford them.
“For a long time I thought my life was over, and now I have a new lease on life,” he said. In 2011, Nicholson sued longtime wrestler Larry Shreve, better known as “Abdullah the Butcher.” He alleges the World Wrestling Entertainment veteran infected him with the virus during a 2007 match by slashing him with a razor. Abdullah, who is known for cutting himself with a razor blade taped to his fingers. A colleague, champion wrestler Bill Graham, who’d had to get a liver transplant himself after contracting hep C, put him in touch with a doctor, who convinced him to start on a triple treatment trial. The treatment came to an end last June. The final battery of tests showed the treatment had eliminated hep C from Nicholson’s body. Now he begins his effort to regain the life he thought he’d lost. He’s training again, intending to compete in amateur wrestling events. Ultimately, he’s hoping to regain a professional contract. Nothing has cured him of that ambition. • Abridged from ottawacitizen.com (13 Jan 2014) http://tinyurl.com/l3wv9yr
Also, in many countries, the patent law allows for companies to obtain compulsory licenses to import or make generic versions of original medicines. Governments grant such licenses if the branded products are too expensive and the original companies do not offer attractive terms for a voluntary license to other firms. Multinational companies have strongly opposed compulsory licenses or laws that allow for patents only for genuine innovations. Mainly at the insistence of the United States, countries are being asked to accept standards of intellectual property that [favour multinationals]. This will cause immense problems for people waiting for cheaper medicines because [the TPPA deal hinders] generic companies getting safety clearance for their [cheaper] generic products. • Abridged from atimes.com (10 Mar 2014) http://tinyurl.com/l67lfbb
Also see ED75, page 19, and ED73, page 25.
Storr Liver Unit
Westmead & Blacktown Hospitals
Our unit provides comprehensive specialist outpatient and inpatient services for people with all liver diseases, including viral hepatitis B and C, fatty liver and liver cancer. These clinics provide assessment and treatment for patient with liver diseases, including the option of participating in various clinical trials of newer therapies. Other services provided include FibroScan, IL28 testing, a clinical psychologist and dietician. For further information contact the Storr Unit Administration – 9845 7705 or the specialist nurses on… Hep B - Susan Holdaway 9845 5627 and Jasmin Canete 9845 6034 Hep C - Susan Holdaway 9845 5627, Jasmin Canete 9845 6034 or Sarah Freitag-Finau 9845 4559 Liver Cancer - Jeannette Valdivia 9845 7419
Hep Review magazine
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Edition 84
June 2014
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promotions
Q&A:
Members of my family want to immigrate to Australia. Do they need to have hep B and hep C blood tests?
Generally, the answer is no – but in a survey form they will be asked if they have hepatitis (or have had it in the past). If someone has viral hepatitis, their visa application will not necessarily be refused. An appointed doctor will consider the cost and nature of treatments you would likely require. When are blood tests required? If your family member is intending to work as (or study to be) a doctor, dentist, nurse or paramedic, they’d be required to undergo a medical examination including HIV, hep B and hep C blood tests. In another exception, screening for hepatitis is mandatory if a person is pregnant, an unaccompanied refugee minor, a child for adoption or a child in the care of an Australian state or territory government welfare authority. • Abridged from Health requirement for permanent entry to Australia (Form 1071i) http://tinyurl.com/n4gy5ay
HEPATITIS
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For more information, call the Hepatitis Infoline on 1800 803 990
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The hep B story A new educational resource has been developed by St Vincent’s Hospital Melbourne. It has been designed for health workers to use in discussion about chronic hep B with clients who have limited health literacy and are newly diagnosed. The tool aims to improve the clients’ capacity to self-manage their illness. The pictures give part of the message and it features easy-English text. Check it out by clicking here http:// tinyurl.com/mpsq36u
Nepean region liver clinic We provide a range of services for persons and families affected by hepatitis B and C. We assist with the assessment and treatment of viral hepatitis. We have a Fibroscan machine and satellite nursing clinics are held at Lithgow and Blue Mountains hospitals, including opioid substitution clinics. Services are also provided at Mt Druitt Aboriginal Medical Service. We can also provide possible access to clinical trials. • For more information, contact Vince on 4734 3466
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Edition 84
June 2014
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feature
Philip Seymour Hoffman’s death in line with heroin use trends Heroin users do not simply “grow out” of their drug addiction, experts say, with more people like US actor Philip Seymour Hoffman using the drug in their 40s and 50s – and dying from overdose.
P
hilip Seymour Hoffman was found dead on Sunday 2 February, after a possible heroin overdose. The 46-year-old star of stage and screen had apparently battled with mental health and addiction issues since his university years. He checked himself into rehab last year after a relapse in his heroin addiction. Shane Darke, a professor at the National Drug and Alcohol Research Centre at the University of NSW, said the medical community was seeing more deaths from heroin among people in their 40s, 50s and even 60s who had cycled in and out of treatment. “We used to think that people would ‘mature-out’ in their 30s or late 20s, but what we have found now is that ... just simply isn’t the case,” he said. “It is a very sticky drug. It’s very addictive; the only drug that is more addictive is nicotine.”
He said his research had found a dramatic increase in the proportion of Australian heroin users aged over 40. In 1996, only one in 10 users was aged over 40 but in 2010, the number had reached one in every three. Professor Darke, the author of the book The Life of the Heroin User: Typical beginnings, trajectories and outcomes, said it wasn’t just the physical addiction, but underlying serious mental health issues, that made recovery so difficult. A US study found that 30 years after people started using about half were dead, a quarter were abstinent, and a quarter were still using. Hoffman told TMZ he had relapsed in 2012, after being off heroin for 23 years. In 2011 he spoke about his anxieties.
“his research had found a dramatic increase in the proportion of Australian heroin users aged over 40. In 1996, only one in 10 users was aged over 40 but in 2010, the number had reached one in every three”
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feature “I think that’s pretty much the human condition, you know, waking up and trying to live your day in a way that you can go to sleep and feel OK about yourself,” he was quoted as saying. He also spoke about his struggles with drink and drugs as a drama student at New York University and reportedly checked himself back into rehab in 2013 after having a relapse with heroin. An official in the New York Police Department said his death appeared to be an overdose. Investigators found a syringe in his left forearm, at least two plastic envelopes with what appeared to be heroin nearby, and five empty plastic envelopes in a rubbish bin, he said. “It’s pretty apparent that it was an overdose,” the official said. “The syringe was in his arm.” He said the actor had been alone. There were no pills and no sign that the actor had been drinking, he added. Professor Darke said people who struggled with the drug should not lose hope. He said the best results came from long-term, sustained treatment programs. • Abridged from smh.com.au (3 Feb 2014) http://tinyurl.com/lq7px94
Drug trends in Australia • Examining age trends ... for opioids, [hospitalisations] are highest among the older age groups. Opioid-related [hospitalisations] among the 40-to-49year age group have remained relatively stable between 2000/01 and 2007/08, with increases recorded to 2010/11. • ... younger users, particularly in New South Wales, were most impacted by the heroin shortage [1999-2000] ... although heroin-related harms are lower in Australia since 2000, it appears that the older, more entrenched users continue to experience problems associated with their heroin use. • In 2009 there were a total of 563 deaths that were due to opioids, lower than the peak in 1999 of 1116 deaths. Since 2007 the rate of accidental deaths due to opioids has started to increase ... the largest increases have occurred among Australians aged 35 to 44 years and 45 to 54 years. Opioid-related deaths have remained stable among younger Australians during this time.
Philip Seymour Hoffman / Wolf Gang via flickr.com
Trends in Drug Use and Related Harms in Australia, 2001-2013. National Drug and Alcohol Research Centre
Hep Review magazine
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feature
Complementary and alternative approaches to hep C TREATMENT
When you’re living with a disease such as hep C, it’s natural to want to try any treatment possible to relieve your symptoms and improve your quality of life writes WebMD’s Stephanie Watson.
For some people with hep C, complementary and alternative treatment offers another option. “Patients who have been treated in the past and failed to respond are interested in exploring various therapeutic options,” says Hepatologist Professor Paul Martin, of the University of Miami. Yet the research on hep C complementary and alternative medicine has been limited, and no study so far has proven any alternative remedy safe and effective for treating the condition. It’s difficult to draw any conclusions from the research because studies on alternative remedies are typically not as rigorous as those used to test medications. “A lot of what the US Federal Drug Administration does is not only prove that drugs are effective but also that they’re safe,” according to Martin. “There isn’t the same sort of scrutiny of [complementary] compounds as there is for prescription and over-the-counter medications.” Determining whether herbal remedies are safe and effective for hep C will become easier as investigators begin to take a more traditional approach to their research, says Professor Victor Navarro, at Thomas Jefferson University in Philadelphia. “We’re testing them like pharmaceuticals so we can really know if there is any benefit.” “I think it’s possible that in the future, some of the therapies may actually have some benefit,” Martin says. In the meantime, if you are going to try such therapies for hep C treatment or any other condition, talk to your naturopath and doctor first. Even herbal remedies can have side effects, and many can interact with medicines you’re already taking. “The appropriate thing is to explore all the options for your particular liver disease with a specialist,” Martin says. Hep C complementary and alternative treatments range from herbal remedies such as milk thistle, liquorice root, ginseng, and thymus extract, to therapies like massage, chiropractic care, and relaxation techniques. Up to 40% of people with
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hep C who have failed conventional treatment say they have tried other therapies, and many report less fatigue, an immune system boost, and better gastrointestinal function as a result. Here are some of the most popular complementary treatments for hep C: Milk thistle (Silybum marianum) is the most popular herbal remedy for hep C and among the best studied. Milk thistle [has been shown] to both reduce liver inflammation and have an antiviral effect on the hep C. A very small study presented at the 2008 European Association for the Study of the Liver conference suggested that milk thistle might decrease levels of the hep C virus in patients who didn’t respond to standard medical treatment. However, a previous larger review that looked at several studies concluded that milk thistle did little to reduce the complications of liver disease or improve the results of liver function tests. Though the evidence on milk thistle is so far inconclusive, the herb appears to be very safe with few side effects reported. Liquorice root (Glycyrrhiza glabra) uses the active component found in the dried root of the liquorice plant. Some studies indicate that it might reduce some of the complications of hep C (including liver cancer) and improve liver function. Liquorice root is either taken on its own or combined with other herbs. In one study, patients who took a combination of liquorice root, milk thistle, and several other herbs had improved measures of liver enzymes and tests of liver function. Liquorice root should be used carefully because it can have significant side effects, including high blood pressure, salt and water retention, and potassium loss. It also can have potentially dangerous interactions with medications such as diuretics, certain heart medications, and corticosteroids. Thymus extract comes from the thymus gland of cows. Because the thymus helps regulate immune function, it has been speculated that its extract might boost the immune system in hep C patients, but too few studies have been done to confirm this theory. A small study of Complete Thymic Formula, a dietary supplement containing
www.hep.org.au
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feature thymus extract, as well as vitamins, minerals, and enzymes, found that this supplement did not benefit hep C patients who had failed conventional treatment. Although this study noted only one side effect (a drop in blood platelets), there is concern that thymus extract might be prone to contamination because it comes from animals. People with immune problems (such as HIV) should use caution when taking thymus extract. Ginseng (Panax ginseng) has been used to boost the immune system, and there is some evidence that it might help people with other types of liver conditions. However, it hasn’t been studied well enough in people with hep C to show any benefit. And because ginseng can decrease blood sugar and increase risk of bleeding, it should be used very carefully.
Lactoferrin is a protein found in milk, as well as in tears and saliva. A few small studies have found that when it is taken as part of a dietary supplement, lactoferrin may lower levels of the hep C virus in the blood and improve liver function. It may be useful when taken together with standard medication, but this remains to be seen in future trials. Other hep C treatments include massage, acupuncture, and relaxation therapy. Although none of these treatments has been shown in scientific studies to work, there is anecdotal evidence that they may help relieve hep C symptoms of illness and ease some of the side effects of antiviral treatment. • Abridged from webmd.com (11 Sept 2011) http://tinyurl.com/86roodx
Schisandra (Schisandra chinensis) is a plant that has been used for centuries as part of traditional Japanese medicine. In one small study, a Japanese herbal medicine called TJ-108 containing schisandra fruit had an antiviral effect on hep C. However, the researchers aren’t sure whether the schisandra or other ingredients in the herbal remedy were responsible for this effect. St. John’s wort (Hypericum perforatum) has gained popularity for treating mild to moderate depression. Some patients with hep C take the herbal remedy to counter the side effects of conventional treatment, but there is no evidence that it works.
anything in this factsheet, phon e the
St John’s Wort is known to interact with many conventional medications including some antidepressants and antiretrovirals. Best to double check with your prescriber and/or pharmacist. (Miriam Chin, dietitian, Albion Centre). Also see page 60.
Hepatitis factsheets
Factsheet: Fibroscan and Liver Biopsy For more information about
In Australia, TGA listing of herbal remedies only ensures the quality (freedom from contaminants) rather than efficacy.
Hepatitis Infoline on 1800 803 990
Can’t you get enough informa tion from blood tests?
When a person might have liver disease their doctor will use a variety of means to determin possible disease. These meth e the level of ods include assessing the sever ity of symptoms, blood tests other x-rays of the liver) and , ultrasound (or liver biopsy. Each of these prov ides diffe rent information. Together, they can be used to evaluate the impa ct of hep C on a person’s healt h, the risk of complications in and to optimise management the future of their illness. A person’s symptoms are impo rtant because they indicate how the hep C is affecting their life. there is little correlation betw However een the severity of symptoms and the extent of liver dama ge. One of the main blood tests performed is an ALT measurem ent; however, the ALT level is measure of liver injury and does an indirect n’t always reflect what is happ ening in the liver. Most impo ALT level cannot indicate if a rtantly, the patient has cirrhosis or not. Some peop le can develop significant liver damage even though their ALT is in the normal range - howe ver this is less common than when liver damage coincides with eleva ted ALT levels. Ultrasound and other X-rays can indicate if there is a block age of blood vessels to or from there is an unusual mass in the the liver, if liver such as a tumour, and can suggest that a patient might advanced cirrhosis - however, have the ‘might’ must be stressed.
Do you know about selfmanagement? It’s about keeping tabs on your own liver health and doing what you can to minimise liver damage. We’ve recently updated our Fibroscan & Liver Biopsy factsheet which is an important part of self-management. To view the complete four page factsheet and our range of 40 other factsheets please go to http://tinyurl.com/3f2gx2p Also see our article, Dealing with West Coast Discrimination, in ED81: http://tinyurl.com/nwulzsw
Hep Review magazine
One of the problems with these X-ray techniques is that they have difficulty distinguishing other conditions such as fat accum cirrhosis from ulation in the liver. This is parti ED84.indd 25 cularly true in early cirrhosis, scar tissue has affected the outli before ne of the liver and blood flow in the main vein that carries blood from the intestine to the liver. The diagnosis of cirrhosis can only really be
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promotions
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live well
The goal of our Live Well program is to help people achieve better health through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and how to make the healthcare system work better for you. We welcome anyone who is living with hep C and is looking for ways to improve their health and wellbeing. Our group workshops are free, confidential and suitable for everyone’s needs. We have also invited a number of experts in diet, exercise, alcohol and other drugs, mental health and treatment to be guest speakers. • Duration: One weeknight each week for six weeks. • Who: You and other people with hep C • Where: Surry Hills (near Central Station)
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ASHM registration and AIDS2014 The world’s biggest medical conference, AIDS2014, is coming to Australia in July. Conference registration is now open and, in a unique offer, you can renew or sign up to ASHM’s membership program when registering for AIDS 2014. You’ll enjoy significant discounts on your membership fee. So whether you are a new or returning ASHM member, we strongly urge you to take advantage of this offer. http:// tinyurl.com/kl7jh62 Find out more about the conference http://www.aids2014.org/ • ASHM
Good, bad or a just a rant ... we want to hear what you think about each Hep Review magazine. Tell us what you think and you’ll go in the draw for a $100 gift certificate. That’s right, we’ve doubled the prize amount. See our reader survey on page 51. Use the page out of each magazine or go online using the survey link. Conditions apply - see page 51.
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feature
Hepatitis NSW Cheryl Burman Award
H
epatitis NSW would like to recognise the efforts and achievements of others in NSW who have made significant contributions in support of people whose lives are affected by viral hepatitis.
Sadly, Cheryl died on 9 August 2011 after her very long struggle with hep C. We are pleased to name this Award in Cheryl’s memory and honour.
The Hepatitis NSW Cheryl Burman Award was initiated in 2013. The award recognises and celebrates a person or team of people, operating in NSW, who have made an outstanding commitment to the advancement of prevention, support, information provision, management or treatment for people living with viral hepatitis, in NSW. The award itself, pays tribute to Cheryl Burman, a key individual who provided exceptional leadership in the NSW viral hepatitis response, and on behalf of Hepatitis NSW and its forerunners, the Hepatitis C Council of NSW and the Australian Hepatitis C Support Group.
The 2014 award will be presented at our Audrey Lamb Community Forum, alongside our AGM in November. • For further information, or to have the Award Process & Guidelines and a nomination form posted to you, please email our Office Coordinator, Ms Katia Chehade, kchehade@ hep.org.au or call Katia on 02 9332 1853. Or, simply download them... Cheryl Burman Award Guidelines and Cheryl Burman Award Nomination Form http://tinyurl.com/kv46ndr The closing date for nominations for this award is 18 September 2014.
Cheryl served on the Board of the Hepatitis C Council of NSW from 1993 to 2000, and as our President from 1995 to1999. Cheryl made significant contributions to the governance and leadership of our organisation for almost seven years, and continued to remain friends with and a supporter of Hepatitis NSW.
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Tattoo operators warn of DANGERS in NEW licensing for tattoo parlours New licensing laws to regulate tattoo parlours could give credibility to backyard businesses and increase the risk of infectious disease, operators warn. New tattoo licences, a NSW government measure to crack down on organised crime and bikie gangs, came into effect in October last year. Since then, 177 licences have been approved, with more than 700 pending.
In October 2012, when the legislation was being debated in Parliament, the then Fair Trading Minister Anthony Roberts said any new health requirements would add unnecessary red tape.
But tattoo artists say the licences are “misleading’’ because the legislation requires no mandatory medical training, health checks or qualifications.
“Licensed operators and artists must ensure they comply with necessary health regulations,’’ he said.
To obtain a three-year licence, tattoo business operators must pay $2094 and individual tattoo artists must pay $699. All tattooists must be fingerprinted, palmprinted and pass a full police criminal check. “The licences are not only horribly misleading to the public but also not in the best interests of the industry,’’ says Josh Roelink, founder of the Australian Tattooists Guild. Mr Roelink, who received his licence in July last year, said they do not ask for cross-contamination knowledge, which he says is essential to prevent the spread of HIV and other blood-borne diseases, including hepatitis B and C. “It’s hard to see if the licences will do any good,’’ he said. “It’s putting pressure on the police and they’re already over-burdened and underresourced.’’ The owner of Penrith’s Wicked Ink tattoo studio, Kelly Fielding, said the laws were an opportunity for the state government to introduce health checks and ban the growing use of home tattoo guns. “We’ve got a hepatitis C epidemic going on,’’ said Ms Fielding. “And in the middle of it, we have the government handing out licences to untrained people who work from home. It’s dangerous. We’re dealing with permanent disfigurement. I don’t understand the logic of it.’’
Since February last year, the government has received 878 licence applications – 250 from tattoo business owners and 628 from individual tattooists. Of those, just 19 businesses and 158 artists have been approved. Mr Bollen said it was likely some tattoo parlours across NSW would be shut down or sold. “Police are looking at businesses who appear to be operating but have failed to apply,’’ he said. • Abridged from smh. com.au (14 Jan 2014) http:// tinyurl. com/ lt8ak3y
Fair Trading acting assistant commissioner Rhys Bollen said the purpose of the licences was to remove “inappropriate people’’ and reduce criminality in the industry. He said the “health aspects’’ of the industry would be dealt with by the Public Health Act.
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philippe_leroyer via flickr.com
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Hepatitis rates climbing among THE Aboriginal population
Viral hepatitis should not be a secret. Anytime you visit a doctor or nurse is an opportunity to talk about hepatitis, says the Aboriginal Health Council of Western Australia.
o matter what population, ethnic group or race someone belongs to, they risk contracting hepatitis B or C equally. The main risk factors being: unprotected sex, injecting drug use, or from a positive mother to her child during pregnancy or birth.
equipment used on many people, or sexual activity with men who have sex with men.
Yet Aboriginal people in Australia are three times more likely to be living with hep B; and hep C notifications are four times higher among Aboriginal people than the non-Aboriginal population.
Walshe says we need to be more aware of risk factors and offer screening for hepatitis B and C, including hepatitis B immunisation at every opportunity.
If hepatitis doesn’t discriminate then why are the rates so much higher? Veronica Walshe, Sexual Health Practitioner at The Aboriginal Health Council of Western Australia says that there is no one simple reason, but she points to higher rates of incarceration being a big factor: “In some communities in Western Australia, the prison population can be more than 90% Aboriginal,” she says. This means there is the potential for people to take part in risky activities, such as injecting drug use, getting a tattoo or body piercing with
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In fact, a screening for hepatitis B and C when first entering prison is sometimes the only way many of the reported cases are ever found.
“For example, when a young man presents at an Aboriginal Medical Service for a minor thing like a twisted ankle at footy, the health worker should discuss and offer a health check which includes a screen for blood-borne viruses. “It can be hard to ask to screen a client for any sexually transmitted infection, including hep B. But sexual health is everyone’s business and if we feel okay talking about it, our clients will be more comfortable. Education and information along with opportunistic testing is the best way to reduce hepatitis transmission.” • The Aboriginal Health Council of Western Australia.
Shaline & Lance, NW NSW / Photo by Exposition by RAF
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hep C
bookmarks
t s C is no Hepatiti d as a classifie ed itt transm sexually disease
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 s isinto the bloodstream The viru of n someone else ed whe transmitt d from This can bloo infected getstatto intooing happen during on or body piercing one pers theofworker does dstreifam not use the bloo else someone sterile equipment and sterile techniques. n atio e inform is For mor w hep C To find out about t r tatto about ho ed, visi safe oing and itt m ns tra au piercing, g. or c. is visit patit ww the www.he w.h ll epatitisc.org.au or ca pline el H or C call the Hep ) C Hel Hep pline (see over
Shaline & Lance, NW NSW / Photo by Exposition by RAF
(see over)
y
O
ur hep C bookm arks have proved very handy in promot ing greater awar eness about hep C in th e general comm unity. Almost 250,000 have been distrib ut ed to many public and private schools, pu blic libraries, TAFE an d university libra ries and commercial book stores.
Can you help ra ise awareness by d istributing the bookmarks?
Ideas include: • putting them in doctors’ surger ies • putting a stac k of them in your local library, community centre or bookst ore • letterbox drop s in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources or der form or phon e the Hepatitis Infoline (on 1800 803 99 0).
Don’t discr
iminate
Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. Hepatitis C is People with hep C come fro all m bac kgrounds. hard to catch. accurately ass You can’t ume anythin about them. g It is not transmitted by who Hep C is ver touching someone 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 you one find from out infected blood hep C, suppor someone has t them and person gets into the don dis ’t criminate aga bloodstream of someone inst them. else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or call the www.hepatitisc.org.au Hepatitis He or call the lpline (see over) Hep C Helpline (see over)
u a . g r o . ort pp u s hep . d n a www information
shop p o t s e n our o
for
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my story
Murray’s story: luckiest guy in the world
I
was diagnosed with hep C genotype 1b (viral load 800,000) about 13 years ago when I was 46. I have significant fibrosis of the liver, plus I also have haemochromatosis (which attacks the liver). This is my story. I am not ashamed of how I got hep C and I want to tell others about it. I don’t care what people think of me or what I have done, and I hope my story will help people not to discriminate against others who are just like me. At 11 years of age I was left on the family farm with two elder siblings that were supposed to look after me but I spent much of the three months that my parents were overseas by myself and fending for myself. At age 13 I was boarded at a hostel whilst going to High School. I was sexually molested by a male carer and I didn’t tell anyone until I was over 40 years old. I now know that these two events changed my life forever!
“Fast forward a few years and, aged 57, I went on triple treatment. I didn’t want to just rest my liver, I wanted to get rid of this virus.” After that I became angry and when I was young I had little respect for authority, ie; law, school etc. It was no great surprise when two policemen came and pulled me from school (aged 14) for some petty crimes I’d been involved in. I was put in jail for 10 days until my court day with one other 38 year old prisoner. I had seven blankets and a board to sleep on! I was remanded to Minda Correctional Centre, Sydney. A detective came down from Sydney and took me back on the train. Initially, I thought it was all fun. First the train ride, then two police officers picked us up from Central Station and drove us through the streets so fast. Before I knew it, they slowed down and turned up the drive to Minda. Seriousness started to sink in and I was thinking, “What have I done?” From that time onwards, my attitude changed completely. I was there over Christmas for five weeks. I went back to court and the judge gave me a two-year Good Behaviour Bond because I got a good report from Minda. It all scared the crap out of me, so there was no trouble after that.
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Instead, I finished school and did an apprenticeship. I smoked dope one night when I was 19, then, not until I was about 21 did I come across marijuana again when I moved to a small city. At this time, I also took some pills and had a couple of LSD trips. I was 24 when I moved to Melbourne – the big smoke. It was about six months after I arrived there that I shared a needle one night when I used heroin. The other person injected me. It was like a sledge-hammer exploding inside my entire body. I did not like it and it was a very bad experience for me. It made me sick and I felt like crap for the next several hours. I never injected anything ever again, and I only tried it because I thought it must be like a bloody good trip. No, no, no; it was nothing like LSD. No colours, just crap! After moving around for a number of years, when I was in my mid-40s, I moved back to my home town. It was here when I eventually had a blood test and got that hep C diagnosis. The doc said, “You have hep C”. I told her that I shared a needle once. She didn’t discuss it or say anything about what I should do. I just went home not knowing what to do, so I did nothing for several months. It sounds funny but the hep C result ended up being the start of a better life. I slowed down and I got married (again). We have been together for 13 years now and I feel I’m the luckiest guy in the world! When I went back to the doc to find out if there was any such thing as a cure for it, she referred me to a specialist. A year later, the specialist also told me that I had osteoporosis and haemochromatosis. I had seven venesections in five weeks and after that I felt much better. My ferritin level was back to normal. From my mid-teens, I’d always felt like crap, like a hangover feeling. I slowed down on drinking after that and I thought everybody felt like I did so now life was worth living – I had some doubts before that! I went on combination treatment for 48 weeks. It started in 2006 and I was 52 years old - it was a rugged year! The first follow-up blood test at six months after finishing treatment said the hep C was detected. I thought to myself, “Bugger!” However, at least I gave it a go and my liver got a rest from the virus whilst I was on treatment. Fast forward a few years and, aged 57, I went on triple treatment. I didn’t want to just rest my liver, I wanted to get rid of this virus. Treatment
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my story
Murray, Western NSW / Photo by LM
“I hope my story will help people who are about to start treatment or those who are considering it.”
finished and then I had to wait six months for a follow-up blood test. This time around, treatment was harder in every way. I felt like I had the flu from the second day to two weeks or so after treatment finished. I also had insomnia, aching, vomiting, headaches, rashes, mood swings, crankiness and I could cry over just about anything. I got tired easily and would run out of breath. I had hair loss, weight loss, memory problems, dehydration, dry mouth and lips, metallic taste in my mouth, hot and cold flushes, a hangover feeling, skin crawling, coughing a lot and anaemia. I’m very thankful that my wife was very supportive– even though I was very difficult to live with at the time! I was asked recently: “Why did you go down this path?” I had not given it much thought until today. Most of my life, I worked hard and partied harder; I drove fast and lost my license four times when I was young (but I’m proud that I never went DUI). Later in life I was told that my life would have been different if I hadn’t been molested by a paedophile when aged 13 and left alone for three months when 11 years old. This may have contributed significantly to the reason I took the path I did. I have three wonderful kids – a 26 year old daughter and 30 year old son, and an 18 year old step son from my third and final marriage. They are all better people than I was and much more sensible. I am a very proud and lucky person!
On the 11th December, 2013 I had a final blood test, it said ‘hepatitis C Virus not detected’ – I was cured! I got the biggest high and felt that way for weeks, I was so happy and felt so lucky! I am so grateful to my wife for her love and support and Hepatitis NSW for the help, support and constant source of reassurance they gave me through these tough times. A big thanks to all those people that helped dayto-day while I was on this journey – my HCV Nurse Specialist, the Nurse at pathology, the girls at the hospital, the chemist, the girls at the local medical centre and everybody else who gave me support over the 48 weeks of treatment I endured. There were so many people in my local community who showed concern and enquired about my health during this time. I would explain to them what I had done and the treatment I was on so more people would become aware, understand and as a result be less discriminatory. I hope my story will help people who are about to start treatment or those who are considering it. You know ... I have no regrets and I would not want to change a thing, well maybe a couple. I now have a lot more fun to have and am enjoying my “hep C free” status – what a ride! • Murray, NSW Edited by “Sister Salvation”. Murray’s $50 personal story payment has gone to the Kids Off The Street charity.
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The ABC of looking after your health: aka, What is Health Literacy? Whether we know it or not, our health literacy affects most areas of our lives. We make decisions every day which affect our health, and which are influenced by our health, writes Adrian Rigg. ealth literacy refers to our understanding of what we need to do to maintain good health. Most people know that eating a balanced diet and getting some exercise are the basics of good health, but that is only one part of good health literacy. “Literacy” means the ability to understand and use a language. In the case of health literacy, this includes the language of doctors, prescriptions, information brochures and public health campaigns. We need to be able to understand these in a way that is relevant to our own life. Of course, the more complicated our health issues become, the harder it can be to assess our situation. This can be the case with hep C as it is such a complex virus, with different types and genotypes. Hep C affects people in different ways, and it can be years before symptoms are really seen. Treatment is also complicated and brings its own problems and side effects. Many people don’t take action about their hep C for some time after being diagnosed; they may need time to think about it all, to improve their health literacy and to reach a point in their lives where they are ready to act. However, during this time, they may still need good support, and information on what they can do to stay healthy – this may be different to how they have previously lived.
“health professionals will be able to empathise, and to understand the level of communication required to meet their patients’ needs”
Why is health literacy important? Health literacy is important to individuals because it can allow them to take better control of their health. It is also important to society as a whole; the more that people are able to take care of their own health, the less it will cost our health system in the long term. The Australian Commission on Safety and Quality in Health Care, an Australian Government Agency, reported last year that lower health literacy corresponds with higher rates of hospitalisation, lower uptakes of preventative strategies such as vaccinations, poorer ability to take medications appropriately, and a higher risk of death among older people. The Australian Bureau of Statistics (ABS) found that people with better health literacy generally have better health, and that those with lower health literacy have poorer health; those with worse health may have chronic conditions and poorer knowledge of how to look after themselves. In this way, an untreated condition can become a lifelong illness. Health literacy really comes out when we have health problems. We need to recognise symptoms that need attention from a doctor, and we also need to be able to describe to the doctor how we feel. Part of this is about being comfortable enough with the doctor so that there is no embarrassment, and being able to trust them to treat us with respect and confidentiality. This comes from both sides of the doctor-patient relationship, and is essential to a good outcome. We also need to be able to understand what the doctor tells us about our health; there can be a lot of information to take in, so we also need to know which questions to ask immediately, and how to find more information later. We need to be able to access specific and trustworthy information; there is a huge amount of information on any subject available online, but it is not all accurate or relevant.
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Jason, NW NSW / Photo by Exposition by RAF
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“the abl ow cos the
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Jason, NW NSW / Photo by Exposition by RAF
“the more that people are able to take care of their own health, the less it will cost our health system in the long term”
professionals will be able to empathise, and to understand the level of communication required to meet their patients’ needs.
There are reliable, helpful online sources of information such as the Hepatitis NSW website; more specifically, if you want to chat and share experiences with other people with hep C, hepcaustralasia.org is an independent, community-based forum for sharing stories and knowledge. Knowing how to find these sites, and how to use them, is an important part of health literacy. How we use our health literacy Like most things in life, we can choose to apply what we know, or ignore it, and we may act in different ways at different stages of life. Knowing that regular exercise is important for good health, we might walk to the shops instead of driving. But once there, we might choose to ignore what we know about eating fruit and vegetables and buy a greasy takeaway instead. The same applies to more complex situations; often the more complicated things become, the easier it is to switch off. When there are too many things that we feel that we “should” or “should not” be doing, it can be overwhelming. This is why it is important to have good support from health professionals. Good health
Access to what we need for good health is also important. Julie, a healthcare worker at a Western Sydney clinic, says that one barrier to people doing the right thing for their health is proximity of resources. “Some suburbs have nowhere to buy fresh fruit, and no easy access to healthcare facilities,” says Julie. “If an area doesn’t have a bus route, then people without a car don’t have many options.” Julie also says that at her clinic they have found that the best way to help people understand how to look after themselves is through positive messages. “Our messages are along the lines of ‘Do it this way and you will have a better experience’, rather than ‘Don’t do that or you will damage your veins’,” says Julie. They also reinforce messages in a way that their clients can understand, which is often best done visually. “I often describe veins as being similar to a garden hose: if it has lots of holes in it, less water
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Janll, Sydney / Photo by Tim Baxter
Julie, Western Sydney / Photo by Exposition by RAF
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Where do people get health information?
“63% of people in high income groups have adequate or better health literacy skills, compared with ... 26% in lower income groups” can get through to where it is needed,” says Julie. “This also helps people understand that some damage can be permanent.” Education and health literacy Education has direct and indirect impacts on our health. Our level of education can determine the type of job we have; income has a big effect on our health, influencing where we live, our quality of housing, our diet, and our access to health care. ABS found in 2006 that 63% of people in high income groups have adequate or better health literacy skills, compared with 43% in middle income groups and 26% in lower income groups. Higher education levels can influence a person’s ability to find the information they need to keep themselves healthy, as well as the ability to make good decisions about their health. Further education equips people with the skills to interpret information such as prescriptions and health brochures.
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Most people will get some health information from a health professional, such as their GP or nurse. Health professionals need a good knowledge of health literacy. Obviously they need to understand the health issues they will come across, but they also need to be able to explain complex issues thoroughly and clearly, and in a way that each patient can understand. If they can accurately assess the level of their patients’ health literacy, they can communicate better and help them improve their health. This should also influence the way health services are structured, so that people can better navigate them. When Jackie found out she had hep C 20 years ago, there were few resources she could find to help her. “I was told that it was incurable and that was about it,” says Jackie. “My GP at that time seemed to know very little about it himself.” She was extremely ill for two weeks and would have really benefitted from some support services. Now Jackie visits a clinic and needle exchange centre where she finds there is a lot of information and support available. “They are totally non-judgemental and share information about anything,” says Jackie. “They make everyone welcome, even just to drop in for a coffee.”
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Karen & Rowena, NW NSW / Photo by Exposition by RAF
Jacklynne, Western Sydney / Photo by Exposition by RAF
Janll, Sydney / Photo by Tim Baxter
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How could health literacy be improved? Providing information is the key to helping people improve their health literacy. This includes formal education such as school, where young people can be taught about good health and given the confidence to access useful information. It is also important for health professionals to be able to communicate well with patients at different levels; they also need the resources, such as brochures and knowledge about support groups, so that they can share these with the people who need them. Studies have shown that a lot of medical information patients receive from health professionals is forgotten once the patient leaves the medical centre – and much of the information retained is incorrect. One of the easiest ways to close the gap of communication between health professional and patient is to employ the “teach-back” method. This is a way to confirm that the worker has explained to the patient what they need to know in a manner that the patient understands. Patient understanding is confirmed when they explain the health message or information back to the health professional.
“[health professionals] ... need to be able to explain complex issues thoroughly and clearly, and in a way that each patient can understand” Just knowing that health information and support is available is very important; someone who was diagnosed with hep C many years ago may not be aware that they can now have access to good treatment and support. Jackie thinks that education and access to information are essential. “Information that can be taken away is good – it can be available without having the difficulty of asking for it,” she says. Health professionals should also be accessible to help interpret written information and clarify any aspects. “Having people to talk to and answer your questions is also essential,” adds Jackie. For more information about health literacy, phone the Hepatitis Infoline and mention this article. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com
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feature
ACT prison needle exchange warning There are warnings of “long-ranging repercussions” if a prison needle exchange does not go ahead at Canberra’s prison.
D
irections ACT, a drug support organisation, has offered to help establish and manage a needle and syringe program in the Alexander Maconochie Centre (AMC). The ACT government announced in August 2012 it intended to introduce the program to prevent the spread of blood-borne diseases within the prison. The government had originally intended to launch the program last year. But a start date remains unclear as the government attempts to broker a deal with the prison guards’ union, which strongly opposes the plan. In a pre-budget submission to the ACT government, Directions ACT, which already provides programs to inmates and support post-release, said a needle and syringe program would pay for itself. It said the program would be a “socially responsible intervention’’ that would meet an obvious need. The submission warned that if the issue went unaddressed, there would be long-ranging repercussions for individuals, their families and the broader community.
Directions chief executive officer Fiona Trevelyan warned there would also be significant health care costs for the ACT government. “People are going to continue to use their own manufactured equipment and share equipment, so it’s infections and ongoing health costs,’’ she said. Mrs Trevelyan said it was a “logical extension’’ for Directions to plan, establish and manage the prison-based needle exchange, saying the organisation already runs needle and syringe programs in the community, and other programs in the AMC. The proposed needle exchange has been mired in delays, with the Community and Public Sector Union and the ACT government stuck in deadlock over the issue. Mrs Trevelyan said it would be fantastic to have the program operating, but that she understood the delay. • Abridged from canberratimes.com.au (7 Feb 2014) http://tinyurl.com/lsq9fcd Visitors centre at Alexander Maconochie Centre, ACT / Photo by Jay Cronan/Fairfax Syndication.
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news
ADCA closes doors
T
he Alcohol and Drugs Council of Australia (ADCA) closed its doors on 28 February 2014. From that date, the national peak body for drug and alcohol treatment providers ceased participation in committee or advisory roles, and all staff left. The ADCA board is considering options for keeping the organisation operational in some form and will communicate with ADCA members and other organisations to that end. • Abridged from ofsubstance.org.au (undated) http://tinyurl. com/ly94olc For further background on the ADCA closure, see Drug-harm minimisation body closes after Coalition withdraws funding (theguardian.com) http:// tinyurl.com/q7chfng
28 February 2014 The Hon. Tony Abbott MP Prime Minister Parliament House CANBERRA ACT 2600 Dear Prime Minister We write to you on behalf of all those concerned to redu ce the massive toll of alcohol harms in Australia to seek your and drug support in reinstating funding for the Alcohol and other Drug Council of Australia (ADCA). s As you will be aware, ADCA has been supported for almo st fifty years by governments persuasions. ADCA provides of all a unique voice for people and organisations working in the drug sector; it is an importan alcohol and t resource for governments , the non-government sector community, including key disa and the dvantaged groups; and it prov ides a vital source of expertise information services, workforce , development and training supp ort, and a range of related prog rams. The defunding of ADCA occu rred without any consultati on. This has caused widespre this government may lack com ad conc ern that mitment to action and appr opriate consultation on alco issues. We have no doubt that hol and drug withdrawal of ADCA’s funding will caus e significant damage to work nationally on reducing alco hol and drug harms. We therefore request as a matt er of urgency that you inter vene personally to ensure the continuation of ADCA and the important services it provides . Yours sincerely Professor Fran Baum Director of the Southgate Insti tute of Health, Society and Equity and the South Australia Community Health Research n Unit Flinders University Dr Tom Calma AO Aboriginal and Torres Strait Islander Human Rights and Social Justi ce Advocate Professor Mike Daube AO Director McCusker Centre for Action on Alco
hol and Youth
Dr Steve Hambleton President Australian Medical Associati on The Hon Terence John Higg ins AO QC Former Chief Justice of the Australian Capital Territory Professor Rob Moodie Melbourne School of Populatio n and Global Health University of Melbourne Michael Thorn Chief Executive Foundation for Alcohol Rese arch and Education Ian Webster AO Emeritus Professor of Public Health and Community Med icine, UNSW Patron of the Alcohol and othe r Drugs Council of Australia Scott Wilson Director Aboriginal Drug and Alcohol Council (SA) Inc. Associate Professor Heather Yeatman Interim Head, School of Heal th and Society, University of Wollongong President of the Public Heal th Association of Australia 20 Napier Close Deakin, ACT Australia, 2600 – PO Box 319 Curtin, ACT Australia, 2605 T (02) 6285 2373 F (02) 6282 5438 E phaa@phaa.net.au W www.phaa.net.au
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Edition 84
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feature
What a Year for Harm Reduction in north america
Writing in the Huffington Post, Hilary McQuie highlights 10 of the most important harm reduction developments in North America in 2013.
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arm reduction is a movement for social justice built on a belief in, and respect for, the rights of people who use drugs. To quote an old social justice slogan, harm reduction is the art of “building a new society in the vacant lots of the old”. And those lots are filling up, due to the hard work of people around the world. Needle exchange in the US turns 25 A quarter of a century ago, public health activists started doing needle exchange in Tacoma, San Francisco and New York. These efforts, now referred to as ‘syringe access programs’, spread and continued and have been widely recognised as the single most successful blood-borne virus prevention intervention. States decriminalise syringes to increase safe syringe access
Obama’s White House Office of National Drug Control Policy [took a 180-degree turn from previous administrations and] supports overdose prevention and naloxone programs, and included them in the 2013 Drug Control Strategy. Also, the drug treatment agency of the federal government, the Substance Abuse and Mental Health Services Administration (SAMHSA) published their long-awaited “Opioid Overdose Prevention Toolkit” which has five components targeting first responders, community members, patients, prescribers, and overdose survivors and their family members. Laws passed in six states to end overdose epidemic by providing antidote Opioid overdose has surpassed auto accidents as the leading cause of accidental death in the US. New laws were passed this year in six states to encourage health care providers and community programs to widely distribute naloxone to treat opioid overdose incidents. Additionally, new programs started providing naloxone access in Colorado, Vermont, North Carolina, Kentucky, Ohio, New Jersey, Minnesota, and Missouri this year.
Photo via
Google Im
ages
Syringe access policy varies by state, and this year, community organising led the Nevada legislature to finally pave the way for syringe access programs and over-the-counter pharmacy sales by fully decriminalising syringes, making it one of the strongest state enabling laws for syringe access programming.
Federal agencies declare support for peerdelivered naloxone distribution
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feature Opioid overdose antidote provided by Rhode Island Walgreens pharmacists directly to patients
was notably initiated by Palm Beach police, a harbinger of change in law enforcement support for harm reduction measures.
2013 saw a statewide scale-up of a collaborative pharmacy practice agreement for naloxone, bringing naloxone to all 26 Walgreens stores in Rhode Island and training 80 Walgreens pharmacists in how to counsel patients on, train in, and dispense naloxone (without a prescription) to anyone who asks for it.
Newly approved hep C treatments move closer to making interferon-free cure a reality for people who inject drugs.
80 Walgreens pharmacists have been trained in how to counsel and train patients on naloxone, and can dispense naloxone (without a prescription) to anyone who asks for it”
Community organises to mandate hepatitis C testing in New York
Jail-based overdose prevention and naloxone distribution begins In March 2013, the Harm Reduction Coalition’s Drug Overdose Prevention and Education (DOPE) Project began providing naloxone to inmates of the San Francisco County Jail as they were discharged. The DOPE Project, in collaboration with SFDPH’s Jail Health Services, conducts overdose prevention training inside the jail, and is able to put naloxone kits in the property of inmates who choose to participate, for pick-up when they are released.
Google Im
ages
Good Samaritan laws for people witnessing overdoses gain traction, law enforcement support
Photo via
Community activists have been working to get Good Samaritan laws passed to protect people from arrest and prosecution for drug possession when they call 911 to report an overdose. Fourteen states have now enacted these laws, as have 90 college campuses. The Florida effort
Hep C remains endemic among people who inject drugs, with chronic infection rates of 70% or more among long-term injectors. While hep C is curable, treatment has traditionally required use of interferon, a drug with significant psychological and physical side effects that does not work for everyone and is difficult to tolerate for many, particularly current and former substance users. In December, the US Food and Drug Administration (FDA) approved a new hep C medication, sofosbuvir, which can be used without interferon for some people.
An estimated 3-4 million people in the US have hep C, and three quarters of them are unaware of it. Baby boomers make up over 70% of people with chronic infection, and are at highest risk of liver complications. Following CDC’s recommendation of a one-time hepatitis C test for all baby boomers, a coalition of harm reduction workers, people who use drugs, and other allies [occupied New York streets and lobbied for the successful passing] of a bill in New York mandating that doctors inform their patients and offer a hep C test. This legislation ensures that thousands of lives that may have been lost to liver cancer and other hep C complications are diagnosed and treated. Montreal approved to open four supervised injection sites There are approximately 90 supervised injection sites worldwide in Europe and Australia, with one in North America: InSite in Vancouver, Canada. In 2013, Montreal was given permission to open four injection sites of their own, ensuring that Vancouver’s InSite is the first but not the last legal supervised injection site in North America. • Abridged from huffingtonpost.com (22 Dec 2013) http://tinyurl.com/kpk3ckg
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my story
Mandi’s story: what price Treatment?
I
saw the box they gave me the medication in and immediately wanted to throw it out the closest window, but I walked to the clinic with it instead. My legs made it harder to get there; they were like weights getting heavier and heavier the closer I got. What is it with hallways in hospitals being bare and lifeless? They make you feel like you get somewhere so slowly or faster than expected. I swear I just blinked my eyes.
Here I am expecting it to be in an “Epi-pen” like they give to diabetics, but, no, it’s a fucking fit AND they want me to do it to myself! Yeah, whoever thought it was a good idea to put it in that form instead of a pen is a fucking genius. Lets give ex-drug users whose weapon of choice back in the day was a fit the same now to get their therapy into themselves. Great idea!
Image by GreensMP / via flickr.com
And the stupid system where you have to take a number but you’ve booked an appointment weeks ago? So you wait and criticise their process until you hear your name called.
information pamphlets and diagrams all over the walls. Reading them seemed much easier than listening to the information coming out of her mouth. But I eventually listened, that is until she started telling me about the injection.
The tiny office, all the equipment I’d need sitting out nice and neatly on the table. I wanted to run, find a hole and stay there until this all just disappeared somehow. But one deep breath and I was sitting in the chair. The worker was talking to me, showing me the different medications that are inside the stupid box. Funny how they want you to pay attention to what they’re saying and they have all these posters,
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My stomach went to my throat; the idea of having to break the promise I made to myself all those years ago when I got clean was beyond sickening. Hot tears were coming from my eyes; I was so mad that they were asking this of me! The feel of that fit in my hand felt wrong. I tried to do it but I couldn’t, I just ended up jabbing my stomach a few times, I couldn’t do it. How dare they ask me to do this to myself when this is how
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my story I got to where I am now in the first place! I cannot comprehend how they think that it is a good idea! Luckily, I had my support person with me who was able to do it for me. But what about people who don’t have that available? What do they do? I asked my questions, got the answers and got given a bag with all the equipment and information in it. The worker had downsized the box, repacking it into an ice pack cooler bag.
overseas before I started treatment. There is a major sense of abandonment going on within me, and a whole lot of confusion. She calls, wants to talk and catch up but when I tell her how I’m really feeling and coping with this treatment it’s like I should be locked up for bringing her back to the reality that she left me to deal with this on my own. Her guilt eating at her really, but wouldn’t that make you want to talk to me about it more? I would’ve thought so. I feel this resentment coming on and the anger is intensifying. I just want a mummy cuddle, is there something so wrong with that? I’m aware she’s on the other side of the world but that’s why I was hoping for a nice conversation. Oh, sorry, she was looking forward to the conversation and how dare I bring something up that would make her feel guilty.
Not sure how positive a person can be when you feel like a pill-popping machine, get jabbed with injections every week ... I still wanted to throw it out the window. Hah, if anything they just made it easier because its now smaller. Walking back to the car my legs couldn’t wait to get home. To be somewhere safe, comfortable and familiar. So I only have 11 more injections. All about being positive they say. Not sure how positive a person can be when you feel like a pill-popping machine, get jabbed with injections every week and are so tired that it is just not funny anymore. But remain positive.
I can appreciate that there are people out there who don’t have a mother or have a really shit mother, but mine was always there and now she’s left and I have to deal with this on my own, regardless of the people I have around me, I still feel alone. It is just frustrating. How is it that my own mother thinks that she can give birth and then disappear on me? I have a four-year-old and I will never do that to my daughter and now that it is staring me right in the face by my own mother it only confirms that I will absolutely always 100% be there for my daughter, even if that meant I would have to travel around the world to get to her. Imagine Liam Neeson’s character in Taken, only a female version.
Image by GreensMP / via flickr.com
Don’t get me wrong. In some ways I can see the benefits of it, I really do, but the rest of the time • Mandi, NSW I just feel like saying ‘Why don’t YOU take all these tablets, oh and come here while I jab YOU with this injection, that will Are you affected by viral hepatitis and looking for support? Then Let’s Talk. make YOU feel unbelievably shit’. And then let’s see how YOU react when I tell Hepatitis NSW has a free counselling service offering face to face, telephone and online sessions. We have a team of qualified counsellors, all with specialised YOU to just ‘Be Positive’. It would be a knowledge in hep C. If you want to talk, we have someone who will listen and complete different story then, wouldn’t work with you to start creating a better way of living. it? Well I would like to say that lots of good things have happened or at least nothing has happened to make treatment any harder to manage than it already would be. But unfortunately that’s not the way life is. It still throws lemons at you even when you’ve got no more room on the bench to make any more lemonade.
For more information call Hepatitis Infoline on 1800 803 990 or email info@hep.org.au
Let’s Talk
Hepatitis NSW Counselling Service
On top of everything that is happening with treatment (which is another article in itself!) I’m finding that I am learning who my true friends are and that even includes family. My mother moved Hep Review magazine
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my story
Number nine for “C”
Hep C Australasia website member, Lynn, writes countdown poetry to support fellow members who are coming to the end of their hep C treatment.
In the online forum you are seen as a warrior, or dragon slayer, trying to kill your dragon (the virus). We invented a town called dragonville where you live while you battle it out. For some reason we gave dragonville a small ‘d’ and it has remained that way. This is one of the dragonville poems.’ “C” has genotype 1. She did nine weeks of telaprevir, was taken off due to side effects, and continued on Ribavirin and Interferon for a total of 48 weeks. “C” has finished her countdown and is currently waiting to see if she has slain her dragon.
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n dragonville the snow lies deep And slayers toss in their sleep They dream of battles newly won And turning faces to the sun But with the dawn will come the day And warriors must wend their way To where the dragons stamp and wait With fiery breath and strutting gait Sword in hand the fighters strike And battle on with all their might Until the snow with blood runs red From a dragon down or dead
Image by ryoheihuke / via deviantart.com
And when the dark reclaims the land Then the warriors form a band And wearily they find the track That leads them on forever back To dragonville where fires burn bright Defeating demons of the night And tales are told of heroes bold Of battles won in days of old Then slayers take themselves to bed To rest a weary, weary head Until the dawn breaks up the sky And they set again to try The snow lies deep in dragonville The air, it is so clear and still And hope it rises with the sun And stays alive till the battle’s done • Lynn
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www.hepcaustralasia.org Do you like the countdown poems? If so, let us know in the reader survey, page 51.
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obituary
news
Philip Seymour Hoffman: 1967-2014
Gilead offers Egypt 99% discount
OSCAR-winning actor Philip Seymour Hoffman was found dead in his New York apartment from an apparent drug overdose. He was 46.
USA – Gilead Sciences, facing mounting criticism over the high price of its new hep C pill Sovaldi, has offered to supply the medicine to Egypt at a 99% discount on the US price.
Hoffman won the Oscar for best actor in 2006 for his portrayal of writer Truman Capote in Capote and created a gallery of other vivid characters, many of them slovenly and slightly dissipated comic figures. The stage-trained actor’s rumpled naturalism made him one of the most admired performers of his generation. He was nominated for Academy Awards four times in all. Hoffman spoke candidly over the years about past struggles with drug dependency. After 23 years sober, he admitted in interviews last year to relapsing and developing a heroin problem that led to a stint at a rehabilitation facility. Just weeks ago, Showtime announced Hoffman would star in Happyish, a new comedy series about a middle-aged man’s pursuit of happiness. In The Master, he was nominated for the 2013 Academy Award for best supporting actor for his role as the charismatic leader of a religious movement.
Image by ryoheihuke / via deviantart.com
He also received a 2009 supporting nomination for Doubt, as a priest who comes under suspicion because of his relationship with a boy, and a best supporting actor nomination for Charlie Wilson’s War, as a CIA officer. Born in 1967 in Fairport, New York, Hoffman was interested in acting from an early age. He studied theatre as a teenager with the New York State Summer School of the Arts and the Circle in the Square Theatre. He then majored in drama at New York University. With a versatility and discipline more common among British performers than Americans, he could seemingly take on any role, large or small, loathsome or sympathetic. Hoffman is survived by his partner of 15 years, Mimi O’Donnell, and their three children.
The drug will cost $900 for a 12-week course of treatment – a fraction of the $84,000 charged for a course of treatment in the United States. The high price tag in America prompted questions from US lawmakers, after US health insurers said they were seeking help from state health officials to foot the bill. Gilead said it was “pleased to have finalised an agreement” for the introduction of Sovaldi in Egypt, which has the highest prevalence rate of hep C in the world. Egyptian health minister Adel El-Adawi said Gilead’s offer would apply to Sovaldi supplies used in government clinics, adding that access programmes would start in the second half of 2014. Nowhere is the problem more acute than in Egypt, which has the world’s highest prevalence of hep C, following the use of poorly sterilised needles in campaigns dating back to the 1970s to stamp out the parasitic disease schistosomiasis. The World Health Organisation estimates that more than 150 million people worldwide are chronically infected, most of them in developing countries, putting them at risk of cirrhosis and liver cancer. But the risk of a gulf in access between patients in the rich and poor parts of the world is causing alarm among health campaigners who warn of a potential re-run of the battle over HIV drugs in Africa more than a decade ago. • Abridged from reuters.com (21 March 2014) http://tinyurl.com/k5nb69z U:\IR\Resources_HNSW\Hep_ Review\ED84_Folder\dragon_ slayer_by_ryoheihuke.jpg
• Abridged from theaustralian.com.au (3 Feb 2014) http://tinyurl.com/my4eucp
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June 2014
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promotions
hep review magazine photo call A picture tells a thousand words, the old saying goes, and we really want your pictures in Hep Review magazine. We want our “voices” to ring loud in Hep Review and for many years we’ve recruited people’s personal stories. We want to go further, though. It makes sense to get pictures of us and our health workers and our clinics into our magazine. Who wants to see images found on the internet which could be from anybody, anywhere (often overseas)? If you like taking photos and have a decent camera, why not become a roving hep C photographer? We’ll pay $50 for each image that we publish in Hep Review and $100 for Hep Review cover shots.
Image / Pa
ul Harvey
Does it sound too easy? Well, there is a bit of work involved. We want pictures of people and this means we need permission sign-offs from the people in the photos. We also need high-definition images; pictures that are between 2MB and 5MB and even bigger for covershots. • Further conditions apply. If you’re interested, please contact Paul Harvey on 02 9332 1853 or pharvey@hep.org.au Also see our call for personal stories, page 7.
Would you like to help with hepatitis C research? You can if you have recently contracted hep C Research Study Treatment of recently acquired hepatitis C virus infection (ATAHC II) The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) is running a hepatitis C study for patients who have acquired hepatitis C recently (in the last two years). ATACH II aims to explore the best treatment strategy for patients with recently acquired hepatitis C infection. You can choose to receive treatment or not if you decide to help. There are clinics participating in the study in Sydney, Melbourne, Brisbane and Adelaide. Contact Barbara Yeung at the Kirby Institute on 02 9385 0879 or byeung@kirby.unsw.edu.au to find out about the study or to find your nearest site. The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee
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tis C
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• Tonic water with a squeeze of lemon • Soda water with a squeeze of lemon • Tonic or soda water diluted with fruit juice and bitters. Hep Review magazine
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Background image by Rice and D / Flickr
Image via
realfoods.
co.uk
Want to alternate your alcoholic drinks with something soft but still with a bit of bite?
Edition 84
June 2014
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hep chef
Date & ginger loaf A slice of this tasty loaf is perfect with a cup of tea on a blustery autumn day. This super quick and easy recipe can be a good one to prepare when you’re short on time or not feeling well enough to prepare a more complex snack. It’s high in fibre, low in sodium and saturated fat and provides a good hit of ginger which can help settle nausea. Serves 10
First, combine the coffee and boiling water, then pour over dates. Allow to soak overnight, or for at least 2 hours. Then preheat your oven to 160°C. Line a loaf tin with baking paper and set aside. Stir ginger and flour into date mixture. Pour mixture into prepared tin and bake for 45–60 minutes (cake will be very moist, but an inserted skewer should come out clean).
2 teaspoons dry instant coffee 1 cup boiling water
• Recipe provided by The Albion Centre and sourced from: http://tinyurl.com/k6dhztl
375g dried, pitted dates, chopped 1 tablespoon ground ginger
Photo via Google Images
Ethan, NW NSW / Photo by Exposition by RAF
1 cup self-raising flour
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feature
GOING VIRAL reaches out across NSW
When most of us think of “going viral” we think of some YouTube video that has gone wild and is being watched by thousands of people around the world. But have you heard of the NSW Going Viral project?
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SW Going Viral is an initiative aimed at organisations working with young people. It is a three-stage project that increases knowledge about hepatitis C and Needle and Syringe Programs (NSP). How to access NSP outlets. What NSP outlets supply. What the key messages for hep C prevention are. And why young people who inject drugs are at increased risk of hep C. The NSW Going Viral project has been rolled out across a number of Local Health Districts (LHD) statewide. It builds and enhances partnerships between organisations working with young people and NSP and hep C prevention services. Further, it increases the capacity of organisations to engage with young people around hep C. It also targets youth-orientated organisations, supporting the incorporation of specific hep C prevention and education activities into existing service delivery. So far we have engaged key youth orientated services in: • Kings Cross/ Darlinghurst region (South Eastern Sydney LHD) • Marrickville/Canterbury area (Sydney LHD) • Penrith (Nepean Blue Mountains LHD)
• with the next stop being Broken Hill (Far West LHD)!
A big Going Viral “shout out” goes to those participating services so far: The Come In Centre, Camp Out, PCYC, City of Sydney, Wayside Oasis, Youth Block, City of Canterbury, Barnardo’s, Mission of Hope, Youth Off the Streets, Marrickville Youth Resource Centre, Australian Red Cross, North Richmond Community Centre, South Court Primary Care, Nepean Community & Neighbourhood Services, Nepean Interyouth, Nepean Migrant Access, Global Skills, Substance. org, Juvenile Justice, PACS, Blacktown Youth Services Association, Blacktown Area Community Centres and Aboriginal Medical Service Western Sydney! We are well on our way to delivering some real outcomes for young people at risk of hep C in these regions. There is much less chance that young people will hear “don’t know, try somewhere else” when seeking services in their local area. More likely, they will be hooked straight into participating services who will deliver their own hep C prevention and education projects – all courtesy of the NSW Going Viral grants program! • Stay tuned for project reports and to find out where the next NSW Going Viral training is being run go to: http://tinyurl.com/ medgyvn
Photo via Google Images
Ethan, NW NSW / Photo by Exposition by RAF
• Blacktown/Mt Druitt (Western Sydney LHD)
The enthusiasm and commitment for the NSW Going Viral project, from all partners involved so far, has been overwhelming!
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feature
HELLO HEPATITIS INFOLINE 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.
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
INFOLINE
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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 – and it’s well worth cleaning your equipment as best you can.
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 water 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, phone the Infoline and ask for a prisons pack to be sent to you. Freecalls: on prison phone enter your MIN, enter your PIN, press 2 for common calls list, press 3 for the Hepatitis Infoline. • Hepatitis Infoline
HEPATITIS 1800 803 990
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.
To clean injecting equipment in gaol:
In reality, if you’re injecting inside you’re probably using needles and syringes that have been used by lots of other prisoners. That makes injecting in prison particularly risky in terms of hep C.
INFO, SUPPORT, REFERRAL
could get passed on in a fight, for example, if two or more people have open cuts and blood.
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promotions The hepatitis C treatment outcome study You are invited to take part in a study designed to determine some of the physical, psychological, and social factors associated with hep C treatment. Previous research has indicated that certain physical and psychological profiles predict better treatment outcomes across a range of medical conditions. However, little is known about how these factors predict treatment outcomes in hep C. This research aims to increase understanding of individual profiles that are associated with better hep C treatment outcomes. We are inviting people aged over 18 years, who have a current diagnosis of hep C, access to the internet and an email address, and who plan to commence hep C treatment, to complete two confidential online surveys. We require your email address so that we can send you a link to the second survey at the appropriate time. The first survey must be completed prior to the commencement of treatment. A link to the second survey will be sent out to participants 14 weeks after commencing treatment. The first survey should take 35-40 minutes to complete, while the second survey can be completed in 5-10 minutes.
Participation in this research is voluntary and any information you provide is completely confidential. Your email address and responses to the survey are not linked to any information that could personally identify you. Only the principal investigators will have access to your email address. You have the right to withdraw from the research at any time, and without penalty. Result summaries and other relevant hep C-based education and information will be regularly posted on our website blog page. This information may be useful for people preparing for and undergoing treatment for hep C. Further, in recognition of the valuable time given to our research, people who meet the eligibility criteria for this study (decision at the discretion of the Phd student researcher), will be sent a A$20 Amazon gift voucher after completing the online surveys. • If you have any questions regarding this research please contact Mr Simon Langston at slangsto@bond.edu.au • If you are interested in participating in our research, you can access the online survey at: http://hcvstudy.bond.edu.au/
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Hep Review magazine
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research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on viral hepatitis. These research update pages attempt to meet this need. The articles on these pages have been simplified, but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Infoline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers. Our online version of Hep Review is at www.hep.org.au and contains live web links to the various sources shown in blue text. Another great reason to go online for your Hep Review magazine.
Quick links from BBV News Hepatitis C and Ageing – The number of people with hep C liver disease is increasing. Growing older and duration of infection are significant in progression to cirrhosis. This report builds and reinforces the findings of previous work – http:// tinyurl.com/lrqmdq5 Steroid users and the unique challenge they pose to needle and syringe program workers – http:// tinyurl.com/l8c7bc5 Findings from the Charting Health Impacts (CHI) study. The CHI study was initiated by the Australian Research Centre in Sex, Health and Society (ARCSHS) in 2010. This report presents a picture of the experiences of people with hep C and we hope that it will inform further Australia’s response – http://tinyurl.com/ld3rhed • The above articles are abridged from BBV News, via j.johnson@latrobe.edu.au
Hep C under-reported on death certificates USA – Only 19% of people dying with hep C had the disease listed on their death certificates, according to Centres for Disease Control and Prevention (CDC) researchers. “This indicates a significant underestimation of the number of deaths among people with hep C and the true medical and public health impact of hep C,” the researchers wrote in Clinical Infectious Diseases. “For purposes of public health, policy planning, disease modeling and medical care, this is a huge burden that should be reported and hopefully spur public health action as curative, all-oral therapies are becoming available to treat hep C.” • Abridged from healio.com (21 Feb 2014) http://tinyurl.com/m9adrfs
If you don’t have internet access, please phone the Hepatitis Infoline for more information on these studies.
Virology update
Headlines from the latest Australian Hepatitis Research Review: Eltrombopag in HCV & thrombocytopenia. Host & viral factors in spontaneous HCV clearance.
HCV p7: a new target for antivirals?
Autocrine loop in genesis of HCV liver fibrosis?
BMP4 promotes HCV replication.
rs738409 genotype affects post-transplant outcome.
• These and more virology articles are available by subscribing to Research Review. http://www.researchreview.com.au/
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TDF provides effective long-term HBV suppression.
www.hep.org.au
8/04/2014 3:25:17 PM
research updates Sleep disturbance common with hep C
COSMOS results are out of this world
Jerusalem – People with hep C, even without cirrhosis, were more likely to experience altered sleep patterns including insomnia, fatigue, depression and a reduced quality of life compared with healthy controls, study findings indicate.
USA – A 12-week all-oral combination of simeprevir plus sofosbuvir led to sustained virological response in 93% of genotype 1 prior null responders with mild-to-moderate liver fibrosis, working as well as a longer course of treatment or triple therapy including ribavirin, according to late-breaking findings from the COSMOS trial presented at The Liver Meeting 2013, the 64th annual meeting of the American Association for the Study of Liver Diseases (AASLD).
“The reported results suggest and confirm previous observations that sleep disruption and its consequences should be regarded as an extra hepatic manifestation of chronic hepatitis C,” Dr Daniel Shouval, director of the liver unit at Hadassah-Hebrew University Hospital in EinKerem, Jerusalem, reported in the Journal of Hepatology. Insomnia, fatigue, depression and cognitive impairment are common symptoms in patients with chronic liver disease with cirrhosis. However, abnormal sleep patterns have also been documented in patients with cirrhosis in the absence of overt hepatic encephalopathy, as well as in patients with chronic liver disease without cirrhosis, according to background information provided in the study. Patients with a history of chronic hep C without cirrhosis were more likely to develop a disrupted circadian rhythm vs. healthy controls, the researchers found. They also had higher scores for depression, fatigue and lower quality of life scores than the healthy controls. Fatigue and quality of life scores correlated with bad sleep quality and daytime sleepiness. Although patients with hep C displayed increased nocturnal activity, no correlation could be established between fatigue and sleep pattern abnormality and 24-hour activity level. The report provides descriptive evidence that a history of past or present mild chronic hep C, even without clinical evidence for cirrhosis or traditional hepatic encephalopathy, is associated with an altered sleep pattern, which has a negative impact on quality of life and wellbeing. • Abridged from clinicaladvisor.com (18 Feb 2014) http://tinyurl.com/kwk2w3f
Ira Jacobson of Weill Cornell Medical College presented findings from the phase 2a COSMOS trial, evaluating oral regimens containing Janssen/ Medivir’s simeprevir and Gilead’s sofosbuvir, taken with or without ribavirin. Treatment was generally safe and well tolerated. The most common side-effects were fatigue, headache, nausea and insomnia, which occurred with similar frequency in both the ribavirin-sparing and ribavirin-containing arms. Anaemia and elevated bilirubin, however, were more common amongst ribavirin recipients. The researchers concluded that treatment with simeprevir plus sofosbuvir, with or without ribavirin, resulted in high SVR12 rates (79-96%) in genotype 1 null responders with stage F0-F2 fibrosis, as well as high SVR4 rates (96-100%) in treatment-naive and null responder patients with stage F3 fibrosis or F4 cirrhosis. Addition of ribavirin to simeprevir and sofosbuvir “may not be needed to achieve high rates of SVR in this patient population,” they added. “Twelve weeks of treatment may confer similar SVR rates compared with 24 weeks of treatment.” Given the approval of both simeprevir and sofosbuvir by the US Food and Drug Administration, Jacobson was asked about the prospect of using these drugs together offlabel as an interferon-free regimen, especially for patients with advanced disease who need treatment now but cannot tolerate ribavirin. “It’s difficult to provide definitive guidance,” Jacobson replied. “But all of us want to help our patients, and it’s not difficult to imagine extrapolating from these data.” • Abridged from aidsmap.com (5 Nov 2014) http://tinyurl.com/k52y5de
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research updates Coffee, chocolate linked to improved livers
Silymarin has direct anti-HCV activity
France – People coinfected with hep C and HIV may experience a reduction in abnormal liver enzymes and an overall improvement in liver function with increased consumption of coffee and chocolate, a study determined.
USA/Europe – Ferenci, et al., treated patients who had failed to respond to pegylated interferon and ribavirin with increasing doses of intravenous silibinin. A dose-dependent reduction of HCV RNA was achieved. Patients were given 15 or 20 mg/kg/day IV silibinin for 14 days, and 280 mg oral silymarin three times per day combined with pegylated interferon and ribavirin therapy from day eight. At week 12, 7/14 patients who were previous non responders had undetectable HCV RNA.
“Our results provide the first evidence that daily chocolate intake and, more generally, polyphenol rich food intake, may contribute to decreased AST [aspartate aminotransferase] and ALT [alanine aminotransferase] levels and potentially improve liver function in HCV-HIV coinfected patients,” the researchers wrote. “They also suggest that polyphenols contained in coffee, but also in cocoa, can be involved in the causal process, which leads to reduced inflammation.” The researchers found patients reporting elevated coffee consumption were less likely to present with abnormal ALT or abnormal AST. Patients who reported elevated coffee consumption and daily chocolate consumption, however, demonstrated reduced incidence of elevated AST and ALT. The researchers called for further studies to better determine the role of consumption and whether supplementation might have an impact on liver disease and injury. • Abridged from healio.com (26 Dec 2014) http://tinyurl.com/lsb8x4k It’s worth noting that the impact of overweight and obesity on disease progression and poorer treatment response is well established, whereas this study only tells us about correlation, not causation. So this is not a green light to gorge on chocolate and coffee but a few small squares of dark chocolate a day or a few cups of coffee with minimal sugar would give the benefit of polyphenols without too much extra kJ. Also, polyphenols aren’t just in chocolate and coffee, but other great food sources include dark coloured berries, plums, black grapes, almonds, walnuts, olives, spinach, broccoli, red onion, apples, peaches, extra virgin olive oil, grapeseed oil and several herbs and spices – all great things to eat! (Miriam Chin, dietitian, Albion Centre)
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Although there was no control group and the numbers were small, this was the first time in the literature that silibinin (intravenously) had shown a direct anti-HCV activity in chronic hep C. It identifies a new pharmacological action for silibinin and provides useful information about effective doses of intravenous silibinin and oral silymarin. Clinically, it is significant because adding pegylated interferon and ribavirin to intravenous silibinin showed greater efficacy than silibinin or pegylated interferon and ribavirin alone. Patients with both genotypes were involved in the trial but no information was provided on the genotype of those with undetectable HCV RNA at week 12. The recent use of intravenous silibinin at a dose of 1400 mg daily for 14 days prevented HCV RNA reinfection after orthotopic liver transplantation. Researchers started silibinin infusions eight hours after orthotopic liver transplantation, when HCV RNA levels measured 182 IU/mL and after three days HCV RNA became undetectable (<15 IU/ mL) and remained so 168 days later. No data were provided past 168 days. This 1400 mg intravenous silibinin dose equated to 20 mg/kg and was based on the original study by Ferenci, et al., who used intravenous silibinin in chronic hep C patients. This clinical case supports the use of silymarin as an antiviral in the treatment of hepatitis C. • Ses Salmond, Herbalist, Naturopath, Researcher, Phd. Leichhardt Women’s Community Health Centre, Liverpool Women’s Health Centre, The Arkana Therapy Centre. (For a referenced version of this article, please contact the editor.) Hepatitis NSW’s clinical advisors note the work of Ferenci is worth reporting but care needs to be taken with the transplant case report which was of a single patient who had a low level of HCV post transplant.
www.hep.org.au
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research updates Barriers to HCV care in OST settings Australia – Barriers to hep C care for patients enrolled in opioid substitution treatment included the perception of being physically well and concerns about adverse effects associated with interferon-based hep C virus treatment, according to results from the Enhancing Treatment for Hepatitis C in Opioid Substitution Settings (ETHOS) study. “Integrating treatment for hep C within settings that provide treatment for drug dependence minimises some of the barriers for clients wishing to undertake hep C treatment,” said study researcher Professor Carla Treloar, of the Centre for Social Research in Health at the University NSW. Treloar and colleagues conducted in-depth interviews with a subset of 57 patients from the study, which was designed to evaluate an integrative treatment model for the provision of onsite HCV assessment and treatment at addiction care facilities. The subset included patients who self-reported living with HCV infection but did not engage in any HCV care, including assessment; patients who were assessed for HCV infection but did not progress to treatment; and patients who were currently receiving treatment for their infection.
According to the researchers, patients who were interested in HCV treatment said issues related to the healthcare setting and provider were important, including the “presence of an engaged clinician, accessible treatment pathway and availability of support”. “Changing the way in which hep C treatment is spoken about is important, particularly providing opportunities for patients who have had positive treatment experiences to discuss these with their peers,” Treloar said. • Abridged from healio.com (11 Dec 2013) http://tinyurl.com/magdo52
Hep C survives up to six weeks at room temp USA – Yale researchers from the schools of public health and medicine have proven that an accidental drop of the hep C virus can remain infectious on surfaces for up to six weeks at room temperature.
The semi-structured interviews included questions about patients’ attitudes toward hep C diagnosis and management. Although the integration of hep C and addiction treatment at the same facility eliminates the need for referrals to offsite care, the researchers said certain themes emerged from the interviews related to barriers to care. For patients who had not been assessed for hep C infection, reasons included the perception that they were physically well and experienced no symptoms. Adverse effects of hep C treatment represented another barrier to care for this group. Among those who were assessed for hep C infection but did not pursue treatment, “family responsibility, unstable housing, and a generalised sense of HCV not being a priority at this point in their life” were common explanations for not committing to treatment. However, interviewees who did pursue treatment cited common motivations for doing so, including an awareness of the seriousness of the infection, witnessing friends who suffered from the illness and a desire to live more healthy lives. Shared positive experiences of hep C treatment also was a motivating factor for engaging in care.
The finding provides biological support for epidemiological data that hospital-acquired hep C infections may be due to contact with objects or substances capable of carrying an infectious organism such as HCV and that unhygienic surfaces may contribute to the rapid spread of hep C among people who inject drugs. The scientists prepared tiny amounts of the virus in human plasma and measured its longevity at different temperature settings. They found that HCV remained infectious for up to six weeks between 4 degrees and 22 degrees celsius. Infectivity was further influenced by the concentration of the virus and the humidity of the storage environment. Commercially available antiseptics, meanwhile, were found to be effective disinfectants if used at the recommended concentrations but not when diluted. The study was published recently in the Journal of Infectious Diseases. While there have been previous studies on HCV infectivity and stability on surfaces, the Yale research is believed to be the first that closely simulates the natural events likely to result in transmission. • Abridged from scienceblog.com (20 Dec 2013) http://tinyurl.com/lvso7hs
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pharmaceutical treatment Triple combination treatment
Standard combination treatment
Triple combination treatment for hep C consists of either Incivo (telaprevir) or Victrelis (boceprevir), taken with standard combination treatment (peginterferon alpha and ribavirin).
Standard combination treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily. Standard combination treatment lasts between 24 or 48 weeks (depending on a person’s genotype and liver condition) and gives a 50-80% chance of cure (depending on a person’s genotype).
This new treatment is for people aged 18 years and over who have hep C genotype 1 and compensated liver disease (no serious liver damage). Triple combination treatment generally lasts 24-48 weeks (depending on a person’s treatment history, liver condition and/or response) and depending on circumstances, can give a 7080% chance of cure. Treatment duration is generally shorter under triple combination treatment compared to standard combination treatment. Studies show there is increased risk of anaemia and skin rash, and other side effects. These will be explained in detail by your treatment team and will be carefully monitored by them.
Subsidised combination treatment for people with chronic hep C is available to people aged 18 years or over who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive. Contraception: Women of childbearing age undergoing treatment must not be pregnant or breastfeeding, and both the woman and her male partner must use effective forms of contraception (one for each partner).
Men undergoing treatment and their female partners must use effective forms of contraception (one for each partner). Female partners of men undergoing treatment must not be pregnant. Duration and genotypes People with genotype 1, see Triple combination treatment, left. For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring People with genotype 4, 5 or 6 who are eligible for 48 weeks of treatment may continue treatment after the first 12 weeks only if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.
For more detailed information on current treatment options, see our Treatment Overview factsheet... http://tinyurl.com/bqbrwr9
CAUTION Treatment with interferon has been associated with depression and suicide in some people. If you have any history of thinking about suicide or depressive illness, talk to your treatment team. They will be able to provide additional treatment monitoring and support. A potentially serious side effect of ribavirin, telaprevir or boceprevir is anaemia (an imbalance of red blood cells). During treatment your blood is monitored closely, especially in the first few weeks, and, if problems arise, doses of your treatment drugs may be lowered or other drugs may be given to help manage your side effects. Skin rash is another side effect that is closely monitored. Ribavirin is a category X drug and must not be taken by pregnant women. Women undergoing treatment – or the female partners of men undergoing treatment – must not be pregnant, or fall pregnant, during therapy and for six months after cessation of treatment. The dose of boceprevir or telaprevir should not be reduced under any circumstances. With these drugs, it is a case of all or nothing.
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complementary medicine People with genotype 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, people with genotype 2 or 3 and cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. You and your clinician should monitor your level of liver damage. Fibroscan is the preferred option, although in some cases, liver biopsy may be suggested. NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Phone the Hepatitis Infoline for the contact details of your nearest centre and to find out where your nearest Fibroscan is located. In NSW, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW For more information, please phone the Hepatitis Infoline and see our Two Hep C Questions booklet.
Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects. A similar trial, but on a larger scale, was later carried out. A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (contact the Hepatitis Infoline regards the above-mentioned trials). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side effects? • Are they a member of a recognised natural therapy organisation?
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 well experienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Infoline (see page 64) for more information and the contact details of relevant professional associations. • Hepatitis NSW.
• How have the outcomes of the therapy been measured?
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support and information services Hepatitis Infoline 1800 803 990 (freecall) For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Infoline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. Other services that can be accessed via the Hepatitis Infoline include: Hep Connect peer support program Hep Connect offers support and discussion with people who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Let’s Talk A free counselling service offering faceto-face, telephone and online sessions for people in NSW. There is a team of qualified counsellors, all with specialised knowledge of hep C. Live Well Group workshops that help people achieve better health through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the healthcare system. Prisons Hepatitis Infoline A special phone service provided by the Hepatitis Infoline that can be accessed by New South Wales detainees and prison staff. Call this free and confidential service by using the prison phone or by calling the number above. Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au
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General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Infoline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). NSPs Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Infoline. Family Drug Support FDS provides assistance to families to help them deal with drug issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phonebook under “sexual health clinics”. They do not need your surname or Medicare card and they keep all medical records private.
Before each print run, all the phone numbers in the magazine are checked by our volunteer in the Hunter. Nice one – thanks Kathleen!
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support and information services Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Infoline distributes information resources in some languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au
Gosford: 5:00pm to 6:30pm on the 2nd Wednesday of each month at the Health Services Building, Gosford Hospital. Coffs Coast family and friends support group A self-directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean Wednesday groups This is a relatively new group open to people who are considering or preparing for treatment, undergoing treatment and post treatment. Family and significant others are welcome to attend. The group meets every two weeks at the Nepean Centre for Addiction Medicine, Nepean Hospital on Wednesdays between 10.30am and noon. The groups alternate between “mixed” and “womenonly”. Our aims for this group are to provide social support, information and encouragement to people affected by HCV. For more information please contact George Klein on 0411 028423.
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
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.
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.
Wollongong hep C support group A support group for people living with, receiving or who have received treatment for hep C. Meets the first Tuesday most months, 10am to 11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.
Want to get involved in lobbying for, or, supporting hep services in your local area? Contact David Pieper, the Hepatitis NSW C me Coordinator, at dpieper@hep.org.au
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promotions The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time. It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.
HALC
legal centre is now able to offer free help with hep C legal issues
HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with:
• Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. For more information, please visit www.halc.org.au or email halc@halc.org.au or telephone 02 9206 2060.
Please phone 02 6198 9800.
A historical perspective – Headlines from 15 years ago
Stay up to date with what’s happening in the hepatitis sectors. Take a look at the WDP website. It includes a training directory and has information and resources on harm reduction and health promotion, and provides updates on upcoming events. ASHM runs ongoing WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details. We invite you to use our website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at wdp@ashm.org.au or phone Sonja Hill (hep C) 8204 0724, or Vanessa Powell (hep B) 02 8204 0762.
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• The Second Australasian Conference on Viral Hepatitis (Christchurch, NZ). • Hep C and living better • Interferon/Ribavirin combination treatment • Living positive and reducing stress in your life • Timeline of 26 Hep Review covers and hep C key events/news • Alcohol and hep C • Fatigue and hep C (HepCare) • Poor oral health and hep C • Hep C and exercise • Hep C and food • Medicines and hep C • Dependents and recreational users: identity in social context • Update on hep C treatment trials (Ausheps 6, 7 & 8 and Nthn Rivers C100 trials) If you are interested in any of the above articles, phone the Hepatitis Infoline to chat about the item or request a copy. • Taken from The Hep C Review, Edition 26, Oct, 1999.
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noticeboard
acknowledgements
CHAMPIONS UNITE
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Andrew Smith Jeffrey Wegener
Want to find out the latest about hep C treatment, advocacy, harm minimisation, education, patient services and resources? Subscribe to The Champion e-Newsletter from Hepatitis NSW. Delivered to your email inbox once a month, The Champion is a great way to stay up to date on hep C-related events and developments across NSW. Share your views: if you sign up as a subscriber, you can even submit your own articles for publication! • To subscribe, just send an email to campaigns@ hep.org.au with your name.
Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Lisa Camillo, Prof Geoff McCaughan, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak Proofreading/subediting: Wendy Beecroft Samantha Edmonds Cindy Tucker First dog on the moon comic: Andrew Marlton Contact Hep Review by phone: 02 9332 1853 fax: 02 9332 1730 email: pharvey@hep.org.au post: Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in: Level 4, 414 Elizabeth St, Surry Hills, Sydney
Hepatitis Infoline: 1800 803 990
ED83 reader survey winner Congratulations to Colin from Goulburn who was the lucky winner of a $50 gift card. Colin was randomly chosen from the 37 readers who responded to our ED83 survey.
Weblink of the month
The state-wide Community Sharps Management Program (CSMP) is a NSW Ministry of Health funded program aimed at improving the management of community sharps. The program commenced in 2002 in response to workplace and public safety issues arising from the inappropriate disposal of needles and syringes in local communities. Community Sharps Management Program has a new website. Check it out: http://www.communitysharps.org.au/
Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to images, graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). These images are used for illustrative purposes only and they have no connection to hepatitis. Cover photo by VOCAL-NY via flickr.com
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www.hep.org.au
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