Hep Review Autumn
Think before you ink Looking after your liver Health literacy: understanding health information Hepatitis B: talking about testing Hep Review plan Edition 72 Monster Japanese hep B compo
his is our first edition for 2011 and I hope this new year is going well for all our readers.
Some people have a very difficult time with their hep C or other liver diseases. There can be clinical and psychological problems that are often very isolating – John’s story in ED71 and Chris’ story in this edition being two examples. Hep Review aims to bridge gaps between those who have viral hepatitis and those who don’t; and to bridge gaps between patients and health care workers. Key to our success is getting the magazine “out there” – spreading the word. Following our write up of the Hep Backpacker project in the last edition, we’ve had feedback suggesting Hep Review be distributed across NSW on a wider basis. Accordingly, we’re trialing distribution via chemists and newsagencies in NSW – especially in the higher prevalence areas – and are sending out display boxes of the magazine to interested outlets. Over 100,000 people in NSW live with chronic hep C and there are thousands more people who have other types of liver disease. Most of these people do not receive regular information from us and we hope many will take a free copy and find out more about dealing with viral hepatitis and liver disease.
a keyhole to our work Women and hep C Having hepatitis C (hep C) can be quite different depending on whether you’re a man or a woman. We know that in NSW prisons, hep C is more prevalent amongst women than men. In the broader community, the situation is reversed – the ratio of men with hep C to women with hep C in actual numbers is roughly 60:40. We also know that women are slightly more likely than men to clear the virus through treatment. What else sets women and men apart in terms of hep C? One significant trend identified in recent years is that the number of new HCV infections amongst young women aged 15–19 significantly exceeds that for young men in the same age bracket. This bucks the overall prevalence trend, which shows HCV notifications in general being higher amongst men than women. One explanation for this could be that young women more often inject with an older, usually male, partner who has more experience with injecting drugs, and that young women tend to inject after their partner, using the same equipment, and with the partner’s assistance. Several factors here (using second-hand equipment and injecting with someone else’s help) could explain the increased rate of HCV diagnosis amongst women in this age group.
Accordingly, in this edition we carry a great article: looking after your liver. We also carry articles on risky tattoing, the CHI study, and nurse-led health care in NSW prisons. All interesting reads!
Weblink of the month
Prof Alan Hemming is one of the few US surgeons who has treated otherwise inoperable liver cancer by temporarily removing a person’s entire liver for reconstruction: http://tinyurl.com/2uqz3sx
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
Cover pic by Paul Harvey. Special thanks to Warpaint Tattoo and Body Piercing, Penrith.
acknowledgements Trends like this emphasise the importance of the work that Hepatitis NSW does with education and health promotion initiatives targeting this agegroup. StreetShot community arts project is one example of this, whilst targeted education sessions are another. Initiatives such as a series of workshops run with women at Guthrie House (a community-based residential rehabilitation and transition service for women who are involved in the NSW criminal justice system) form part of the work Hepatitis NSW does around women and hep C. This health promotion initiative saw residents and staff at Guthrie House learn about viral hepatitis and develop lifestyle skills to promote better health. Hepatitis NSW aims to help increase the capacity of other services to provide information and services around hep C to their clients. In 2010 we distributed a number of grants to different organisations who ran events during Hepatitis Awareness Week. Two organisations who received funding ran hepatitis education sessions targeting Arabic-speaking women. Hepatitis NSW produces resources targeted specifically at women living with hep C. These are our factsheet on pregnancy, babies and children, and our soon-to-be-released brochure on pregnancy and hep C testing. Of course, for many women, having hep C isn’t just about the practicalities of being a mother.
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Chris Norris Lia Purnomo Gideon Warhaft Scott West Hep Review medical and research advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Yvonne Cossart, Prof Greg Dore Prof Geoff Farrell, Prof Geoff McCaughan Mr Tadgh McMahon, Dr Cathy Pell Ms Ses Salmond, Prof Carla Treloar Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Prue Astill Samantha Edmonds Sarah Fleet Kris Gerard Newham Adrian Rigg Maureen Steele Cindy Tucker Dog on the moon comic: Andrew Marlton Contact Hep Review: ph 02 9332 1853 fax 02 9332 1730 email firstname.lastname@example.org text/mobile 0404 440 103 post Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney
Continued on page 49
Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney)
Seeking your story Personal stories provide balance to our other articles. Please consider telling us your story. Published articles attract a $50 payment. Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.
Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are funded by NSW Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.
contents Letters IL28B info
News Telaprevir now with FDA Boceprevir scores high in hep C trial Hep cage fighter attacks officers at Aspen lodge FDA okays expanded use for hep B drug Calls for hep C screening in UK pharmacies Hep B threat for Asian and Pacific Islander Americans OraSure honoured for rapid hep C test More hep B deaths at US care centre 40 hep C cases at Mallorca clinic Alaska all but eliminates hep A 300,000 with hep C in Kyrgyzstan Woman hula-hoops up Mt Kilimanjaro Drink and obesity behind rise in liver death toll Tattoo craze hits NZ blood service NZ goes fibroscan Big UK hep C compo plan Monster Japanese hep B compo plan Aussies with haemophilia want compo too Patches to help to improve your overall health Aussie hep C death rates disappoint Australia’s missing hep C cases Drug doctor tested for wrong drugs Second drug doctor at Melbourne clinic Backyard body art a dangerous game Blood bungle puts 55 at risk of hep A few steps closer to ultimate dream Westmead cannabis liver research Our support groups become drop-in evenings
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Features Health literacy: understanding health information Looking after your liver The CHI study: understanding hep C is the answer Hepatitis B: talking about testing Choice busts weight loss myths Aboriginal people’s access to treatment services All you need to do is ask: nurse-led model of care Think before you ink
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My story Stephen’s story: climbing a mountain 24 Meg’s story: a very public hep C history 28 Peter’s story: 52 and living 34 Chris’s story: dealing with the after-effects 46
Opinion Renewed calls for ACT prison needle exchange Inject reality into drug debate
Promotions Twitter 6 Resource of the month – Hep ABC Game 7 St Vincent’s viral hepatitis trials 8 RAMPT-C study 9 Hep C discrimination study 10 CHI study 27 Picnic in the park 41 HALC legal assistance 45 Information update sessions for members 45 Hep C bookmarks 50 Hepatitis NSW website 50 Transmission Magazine 50 Info update sessions 50 HepConnect peer support program 50 The most precious gift - organ donation 62 WDP - Workforce Development Program 62 Research updates Working with the “hierarchy in the underworld” Insights into providing a better hep C diagnosis Hep C virus can live for months in liquid IL10 associated with chronic hep C Hep C infection linked to fat enzyme in liver cells Pharmacists need support for harm reduction Growth factor drugs bolster treatment compliance Telbivudine reduces hep B infection rate Diabetes and hep C in Pakistan Gene associated with treatment depression
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Regular features A keyhole – Our work with women 2 Q&A – New genetic tests for hep C 18 Harm reduction poster – Vein care (part 2) 32 The little book of hep C facts 35 Hello Hepatitis Helpline – hep C and sex 48 Membership matters 49 A historical perspective (from April 1996) 49 Resources faxback order form 57 Interferon-based treatment 58 Complementary medicine 59 Support and information services 60 Do you want to help us? 62 Upcoming events 62 Complaints 62 Membership form / renewal / tax invoice 63
Image courtesy of Google Images
IL28B info I’m a 56 year old bloke and I’ve had hep C probably since the late 70s. I live in rural NSW; a two hour drive to my nearest small town and a long, long way to the city. I heard about IL28B and have one or two questions. How important is this test as a guide to help decide whether treatment is likely to succeed for me? I have genotype 1b – and my mate, also with hep C from the same period, has genotype 3. Where can we get tested? What does it cost? Is the test good for both of us? Is the testing well known by medical professionals? Can I visit my local GP or do I have to go to a hospital with a liver clinic? How reliable is the test and is it for everyone with hep C? Steve, NSW Thanks for your questions, Steve. The IL28B test is an important new tool for people considering hep C treatment. It is very useful for predicting your chances of responding well to treatment – especially for people like yourself who have hep C virus genotype 1. Another very useful test is one that you’ve already had done – the hep C virus genotype test (people with virus genotype 1 have a 50% chance of clearing their hep C, while people with virus genotype 3 have an 80% chance). Both of these tests are available through GPs although the IL28B test is very new and not all GPs may be aware of it. The Hepatitis Helpline can provide information for your GP if she is unaware of the procedures. The hep C virus genotype test is available free under Medicare but the IL28B test costs around $100. The tests provide only a general prediction of your body’s chance of clearing hep C. People with hep C virus genotype 3 probably don’t need to have the test done as they already have an 80% chance of cure.
Telaprevir now with FDA USA – Vertex Pharmaceuticals announced it has submitted a New Drug Application to the US Food and Drug Administration (FDA) seeking approval for telaprevir, Vertex’s investigational treatment for people with hep C. The NDA submission is supported by results from three Phase 3 studies – ADVANCE, ILLUMINATE and REALIZE – which evaluated telaprevir in people with genotype 1 who were new to treatment as well as those who were treated before but did not achieve a sustained viral response. The submission includes a request for Priority Review, which would reduce the FDA’s review time from 10 months to six months. The FDA grants Priority Review status for several reasons, including if the medicine is considered a major advance in treatment. “This submission is a milestone in our more than 15-year effort to change the way hep C is treated,” said Matthew Emmens, Chairman, President and CEO of Vertex. “We are committed to working closely with the FDA to make telaprevir available as quickly as possible to the millions of people with hep C who need new medicines to increase their chances for a viral cure.” • Abridged from drugs.com (23 Nov 2010) http://tinyurl.com/5v6gguo More news on FDA approval of telaprevir is expected in May 2011. ED
For an explanation of how the tests work, see page 18. ED Hep Review
news Boceprevir scores high in hep C trial USA – Merck says its hep C drug boceprevir reached its primary endpoints in two Phase 3 studies and will file for FDA approval by the end of 2010. Boceprevir was one of the jewels in ScheringPlough’s crown when Merck swept in to buy up the company. Analysts say that the drug has the potential to go on to become a blockbuster producer for Merck. In the boceprevir 48-week treatment group, 66% of patients achieved an SVR (sustained viral response or cure) according to Merck, and in the boceprevir response-guided therapy group, 59% of patients achieved SVR, compared to 21% in the control group. “If approved, boceprevir may have a tough time competing against Vertex’s hep C drug, telaprevir, which [has been filed for approval],” notes TheStreet’s Adam Feuerstein, an avid student of all things regarding telaprevir. “Results from a similar Vertex study in so-called “treatment-naïve” hep C patients released in May showed that telaprevir plus the standard of care achieved a cure rate of 75%. • Abridged from fiercebiotech.com (4 Aug 2010) http://tinyurl.com/39t69bo Boceprevir and telaprevir are the two main new emerging hep C treatments. It is hoped they will be approved for use in Australia by 2012 or 2013. ED
Hep cage fighter attacks officers at Aspen lodge USA – A competition cage fighter is accused of assaulting three police officers at an Aspen lodge in an attack that ended when officers stunned him twice with a stun gun, police said. “He was throwing the guys around pretty good,” Aspen police Sgt. Dan Davis said of Charles Brandon White, according to the Aspen Daily News. Even after White was handcuffed, he kept fighting officers with his feet, apparently using his fighting skills, Davis told the newspaper. He also spat on the officers and told them he had hep C, according to the affidavit. Several officers sustained minor injuries while struggling to restrain White, police spokeswoman Stephanie Dasaro told TheDenverChannel.com. White was treated for minor injuries at the Aspen Valley Hospital. • Abridged from thedenverchannel.com (14 Sept 2010) http://tinyurl.com/2cht2r2 Media reports sometimes suggest that spitting is a hep C transmission risk. There are no recorded cases of hep C being transmitted this way. Hep C is transmitted through direct blood-to-blood contact. For more information, phone the Hepatitis Helpline. ED
We publish lots more hep C related news on our website. Do you want daily updates on our website news items? Just follow us on Twitter You’ll get the first 140 characters (a sentence or two) and a link to each news item as they are put up daily on our website. You’ll also get the link to the original source of the news item. It’s as easy as “one two three!” 1) Open a Twitter account. 2) In Twitter, click on “find people” and search for “hepCnsw”. 3) Click on the “follow” button.
news FDA okays expanded use for hep B drug
promotions Calls for hep C screening in UK pharmacies
USA – Drugmaker Bristol-Myers Squibb said federal regulators have approved its hep B treatment Baraclude (entecavir) for patients with more severe forms of the liver disease.
Spain – Chemist shop screening for hep C could help thousands who may unknowingly be at risk from liver disease and cancer, experts have claimed.
The US Food and Drug Administration approved the New York company’s application to treat chronic hep B in adult patients with decompensated liver disease (which involves the liver failing to perform properly often due to severe scarring).
Around 70,000 people in England and Wales have been diagnosed with hep C. It is estimated half a million people in the UK could have contracted the disease without even realising it.
The treatment was first approved in March 2005 to treat patients with compensated liver disease, where the liver is damaged but can still perform. Bristol-Myers said Baraclude showed greater viral suppression in patients when compared with adefovir in a late-stage study. • Abridged from businessweek.com (18 Oct 2010) http://tinyurl.com/22sl3nc
A pilot screening scheme involving 19 pharmacies picked up a much higher rate of people with the virus than screenings carried out by GPs. One in six people tested in the pharmacies came back positive for hep C, which can be transmitted through infected blood. The Royal Pharmaceutical Society and the UK Hepatitis C Trust are now calling for more screenings nationwide. • Abridged from news.sky.com (18 August 2010) http://tinyurl.com/2djrn9u
Featured resource of the month
Hep ABC Game
“Designed and produced by Hepatitis NSW, the Hepatitis ABC Game is a proven hit with training groups,” says Althea Mackenzie, Coordinator of Education and Development at Hepatitis NSW. The board game is designed for groups of 3-20 people, taking them through an engaging journey, introducing the basics of heps A, B and C. The game is designed to be delivered by a facilitator. Training notes are supplied and costs apply. • For more information about the game, please contact the Hepatitis Helpline.
news Hep B threat for Asian and Pacific Islander Americans USA – Although routine vaccines have curtailed hep B, more than one million people in the United States are living with the chronic disease, and roughly half are Asian Americans or Pacific Islanders. Still, many Asian Americans and Pacific Islanders don’t realise they’re at an increased risk of having the serious liver disease. In a recent National Public Radio blog post, writer Amy Ta talks about her revelation that she could be infected with hep B and why it’s important for her community to be proactive in preventing and treating the disease. Stanford University’s Dr Samuel So is someone who has also been talking about it. He directs the Asian Liver Center, an organisation dedicated to addressing the disproportionately high incidence of hep B and liver cancer among Asian communities, and he is active in raising awareness of these health issues. In a 1:2:1 podcast from earlier this year, he discussed both hep B and hep C and the need to revise our strategy for preventing and treating the diseases.
OraSure honoured for rapid hep C test USA – One of the latest products from OraSure Technologies, a rapid test for hep C, has been recognised by the magazine Popular Science as one of the top 100 technological innovations of the year. The Bethlehem company’s OraQuick HCV test, which can test for the hep C virus in 20 minutes, was approved in June 2010 by the US Federal Drug Administration for use with whole blood samples. OraSure is seeking regulatory approval to use the test with a finger stick blood sample. OraSure is the first company to offer a rapid test for the virus in the United States, which means patients can be tested and get results in one visit. Other tests have to be sent to labs, which can take days. “We are honoured to be recognised by Popular Science magazine as an innovative company that is making revolutionary strides to help identify more at-risk individuals infected with hep C,” said OraSure CEO, Douglas Michels. “This award is a reflection of the passion and commitment of our employees, partners and customers in the fight against hep C.”
• Abridged from scopeblog.stanford.edu (7 Dec 2010) http://tinyurl.com/23whrtd
Popular Science editors review thousands of products annually to select the top 100 tech innovations of the year.
Visit http://tinyurl.com/2daxza6 to see Dr So’s 1:2:1 podcast.
• Abridged from mcall.com (17 Nov 2010) http://tinyurl.com/2fcprph
Similar high rates of hep B exist among Asian and Pacific Islander Australians. ED
St Vincent’s Hospital Viral Hepatitis Clinic – in Darlinghurst – is recruiting people for trials, including combination therapy and newly developed protease inhibitors. • For further information, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents. com.au or Fiona Peet: ph 8382 2925 or fpeet@ stvincents.com.au
Image courtesy of Google Images
St Vincent’s viral hepatitis trials
More hep B deaths at US care centre USA – There has been a sixth reported death in connection with an outbreak of hep B at a North Carolina assisted living centre. Public Health officials in North Carolina have announced that a former resident of Glen Care of Mount Olive died in November 2010. Officials have not released the cause of death, but they acknowledge that the woman was diagnosed with hep B in October during the screening of residents at the facility. On 12 November, the North Carolina Division of Public Health confirmed that the improper use of blood glucose level testers is most likely to blame for the outbreak. State investigators say that during interviews with employees, one admitted that the same blood testing needles were shared between patients at the facility. The official investigation has not revealed how the hep B first entered the facility. Officials believe it possibly came from a patient who was a chronic carrier who died or was discharged before the investigation started. • Abridged from vaccinenewsdaily.com (2 Dec 2010) http://tinyurl.com/2du6ttu Also see “Blood bungle...”, page 16. ED
news 40 hep C cases at Mallorca clinic UK – Health authorities are investigating whether dialysis treatment in a clinic in Inca (Mallorca) has infected more than 40 people from across Europe with hep C. A health alert was sounded when the virus was detected in two Scots who had just returned from holiday in Mallorca, where they underwent dialysis treatment. Diario de Mallorca reported both infections, but the Spanish Department of Health denied there had been an outbreak of the disease. They stressed that no new cases have been recorded. However, European Commission sources confirmed that the investigation of the outbreak has led them to contact patients from Italy, Germany, UK, France and Spain who were also treated at the clinic. Samples from the affected patients are now being tested in the Spanish reference centre for this disease. The goal of testing is to determine if the RNA virus that has infected these tourists is the same. • Abridged from thereader.es (30 Nov 2010) http://tinyurl.com/293uhyt In such cases, it is believed that transmission is a result of lapses in sterilisation of equipment or re-use of single-use equipment. ED
news Alaska all but eliminates hep A USA – While Alaska ranks among the worst in many health-related issues, it ranks at the top for prevention of hepatitis A – once a serious problem in Alaska, especially in rural areas. Vaccines have wiped out the disease in Alaska. Dr Rosalyn Singleton says it’s a monumental turn around. Singleton, the lead author of an article that recently appeared in the journal Vaccine, said once the vaccine was introduced and Alaska started immunising children, the number of cases decreased rapidly. “Our hep A rates went from about 60 per 100,000 population to less than one per 100,000 population,” said Dr Joe McLaughlin, the state’s chief epidemiologist. “Anyone who does public health [understands] the tremendous power of vaccine to curb illness, and certainly this is one of the great demonstrable success stories here in Alaska,” he said.
300,000 with hep C in Kyrgyzstan Kyrgyzstan – Approximately 300,000 people in Kyrgyzstan are infected with the hep C virus, officials have announced. The senior officer of the Health Ministry, Dinara Sagynbaeva, reported at a panel discussion of the hep C epidemic and its treatment. She said that the number of people with hep C is growing annually. “Recently, cases of hep C transmission become more frequent due to violations of norms of bacterial purification during medical procedures. Often children, especially new-born, suffer from hep C,” said Sagynbaeva. According to Ministry data, the hep C rate increased by 23% over the last six years. • Abridged from 24.kg (5 Oct 2010) http:// tinyurl.com/2bo27cy
With the vaccine now mandated for schoolchildren, Alaska’s numbers will likely remain low. • Abridged from ktuu.com (7 Dec 2010) http://tinyurl.com/2dlgn3d
Hep C discrimination study ASHM is working with the National Centre in HIV Social Research on a research project around discrimination experienced in health care settings. This project spans discrimination experienced by people with hep C and/or HIV and involves a literature review and stakeholder interviews. The project will focus on: • What form does stigma and discrimination take in relation to both hep C and HIV and what trends can be seen in reporting of stigma and discrimination in the health care sector? • When and where is stigma and discrimination experienced by the patient? Why is stigma and discrimination experienced at these points?
• Which disciplines and professionals contribute to experiences of stigma and discrimination? • What impact does the experience of stigma and discrimination have on the person with HIV or hep C and how does this affect engagement with health services? • How do the health care system and health consumer organisations deal with these and other forms of stigma and discrimination? The work is funded by NSW Health. A report with recommendations will be submitted to NSW Health in March 2011. • Abridged from www.ashm.org.au
Woman hula-hoops up Mt Kilimanjaro UK – It’s hard enough scaling the dizzying heights of Mount Kilimanjaro at the best of times. So it’s no surprise that Julianne McGregor’s head was spinning when she completed the mammoth climb – particularly because she hula-hooped her way through the challenge.
news Drink and obesity behind rise in liver death toll UK – Binge drinking and obesity are fuelling a surge in deaths from liver disease, experts have warned. The number of lives claimed by wornout livers has soared by 60% in only a decade.
McGregor was inspired to take part in the feat by her best friend Megan James, 31, who has thyroid and liver cancer.
Liver disease, including cancer, claimed 9,719 lives in England in 2008 – up from 6,058 ten years earlier, a report has said.
“Meg really inspires me with her overwhelming positivity in the face of trials and her fantastic sense of humour. So this is my way of returning the favour,” said Miss McGregor, originally from New South Wales, Australia.
Soaring rates of binge drinking, obesity and hep C mean the number of deaths is predicted to double in only 20 years.
“I thought this would put a smile on her face. If not, the pictures of me dirty and sweaty but resolutely hula-hooping surely would.” The 28-year-old’s climb raised more than £4,000 for the World Cancer Research Fund (WCRF), with more money still coming in – and her employers, Macquarie Bank, have promised to match her total. The challenge saw her stopping at regular intervals to whip out the hula-hoop and start spinning, which put smiles on the faces of the local mountain guides. The HR worker also had to endure altitude sickness and temperatures that rose to 30C during the day before plunging to -20C at night. “The altitude sickness and freezing temperatures weren’t the worst – it was sheer exhaustion that nearly did me in. After eight days walking up the world’s fourth highest mountain you really do feel like collapsing and giving up,” said McGregor.
The report, by the All-Party Parliamentary Hepatology Group, highlights huge variations in the care and treatment given to hepatitis patients in British hospitals. “There is effective treatment available for hep C so there is absolutely no excuse for the death toll to continue rising,” said Tory MP David Amess, who chairs the group. “The staggering increase in deaths from liver disease and liver cancer show just how vital it is that the national liver strategy is developed as a matter of urgency.” Charles Gore, chief executive of the UK Hepatitis C Trust, said that hep C is a problem that can be solved, in contrast to other areas of healthcare. “It could be all but eradicated in this country in the next 30 or so years if the Government commits to a strategy for diagnosing all patients, preventing further transmissions and ensuring high-quality care and treatment for all,” he said.
• Abridged from yourlocalguardian.co.uk (25 Oct 2010) http://tinyurl.com/2elvvvp
A recent British Medical Association conference heard how one in four adults are drinking at levels that are hazardous to their health and 36,000 young teenagers get drunk every week.
Also see “A few steps closer to ultimate dream”, page 17. ED
• Abridged from dailymail.co.uk (30 Aug 2010) http://tinyurl.com/2aqdjun
news Tattoo craze hits NZ blood service
Big UK hep C compo plan
NZ – Kiwis’ love affair with tattoos has resulted in an unfortunate increase in the number of would-be blood donors turned away because of health concerns.
UK – The UK Government has announced a £130 million (A$210 mill) boost in support for people who contracted hep C after being treated with contaminated blood.
The New Zealand Blood Service (NZBS) knocked back 1,714 potential donors between July 2009 and June 2010 because they had been inked within six months of wanting to give blood.
Payments to patients who develop serious liver conditions as a result of transfusions of tainted blood during the 1970s and 1980s will see their lump sum payments double to £50,000 (A$81,000) with a new annual payment of £12,800 (A$27,000).
That was up from 1,430 the previous year and 894 the year before that. Marketing manager, Paul Hayes, said having tattoos was just one of a myriad of reasons potential donors are turned away. Others include various illnesses, injuries and medical conditions. • Abridged from stuff.co.nz (7 Nov 2010) http:// tinyurl.com/27uhcg7
NZ goes fibroscan NZ – Waikato Hospital is the first hospital in New Zealand to install a fibroscan machine which identifies potentially fatal liver disease and alleviates the need for painful biopsies. Waikato Hospital’s Gastroenterology Unit took possession of the $200,000 machine last week and is already using it on patients. It is in wide use overseas but had not been used before in New Zealand.
The ex-gratia scheme will also be extended to allow posthumous payments to people with hep C who died before 29 August 2003, following what Health Secretary Andrew Lansley described as “one of the great tragedies in modern healthcare”. Mr Lansley also announced that patients infected with hep C or HIV through blood transfusion would receive free prescriptions and a £300,000 (A$485,000) fund would provide counselling for sufferers over the next three years. “Taken together, these announcements represent a significant rise in the support available to those affected by this tragedy,” said Lansley. “Putting an exact figure on the package is difficult, as there is some uncertainty about how many will be eligible, and how their illnesses may progress.” “However, we believe these new arrangements could provide up to £130 million (A$210 mill) worth of additional support over the course of this Parliament.”
Clinical director of gastroenterology Dr Frank Weilert said the procedure will reduce the number of liver biopsies by 50-60% at Waikato Hospital.
The changes apply only in England, but Mr Lansley said he would speak to the devolved administrations about extending the support across the UK.
“We’re expecting to carry out at least 150 procedures in the next 12 months but anticipate more because the number of suitable candidates for a fibroscan is much greater than for a needle biopsy,” he said.
“Today’s announcements cannot remove the pain and distress these individuals and families have suffered over the years,” he told MPs.
• Abridged from waikatodhb.govt.nz (10 Feb 2010) http://tinyurl.com/2ffqbbb For more information about fibroscan, see ED65, page 24. ED
“But I hope these measures can at least bring some comfort, some consolation and perhaps even some closure for those affected.” • Abridged from google.com/hostednews (10 Jan 2011) http://tinyurl.com/4elkx7u
news Image courtesy of Google Images
Monster Japanese hep B compo plan Japan – A group of people with hep B suing the Japanese government have accepted a courtproposed ¥3.2 trillion (A$32 bill) settlement plan on condition the state apologises and offers them blanket compensation. The move will help end a series of damages suits filed nationwide by hep B patients believed infected by repeated use of needles during group vaccinations decades ago. The government is considering enacting a special law to offer compensation to all the sufferers, including those not involved in the lawsuits. The group is estimated to number as many as 440,000 nationwide. It remains unclear, however, how the government can secure the estimated ¥3.2 trillion (A$32 bill) needed to provide relief over the next 30 years. Earlier this month, the Sapporo District Court proposed that the government pay up to ¥36 million (A$440,000) in damages to hep B patients depending on their condition, as well as ¥500,000 (A$6,000) each in compensation plus expenses for health checkups and transportation for asymptomatic carriers who have not developed any symptoms. The vaccination law was put into effect in 1948 with the aim of preventing the spread of infectious diseases such as diphtheria and tuberculosis, and mass vaccinations began for children at schools. Needles are believed to have been used repeatedly until around the 1980s. In June 2006, the Supreme Court ruled in favor of five plaintiffs infected with hep B who had filed a damages suit against the state in 1989, recognising they contracted the virus through mass vaccinations. The state failed to work out any broad, specific relief measures for people with hep B and since March 2008, a total of 630 people have filed suits with 10 district courts across Japan. • Abridged from The Japan Times (23 Jan 2011) http://tinyurl.com/6xu56hg
Aussies with haemophilia want compo too Australia – Australians who caught hep C through contaminated blood supplies more than 20 years ago say they are still trying to get financial support from the Federal Government. Haemophilia is a rare genetic disorder and sufferers rely on blood transfusions to survive. But around 1,000 Australians with haemophilia contracted hep C before the routine testing of blood products began and they are calling for more support in dealing with the debilitating disease. • Abridged from abc.net.au (10 Nov 2010) http://tinyurl.com/26kg8of Many people with hep C and a bleeding disorder experience financial difficulties associated with their healthcare needs. There are a number of government schemes to help people with out-of-pocket medical expenses and with transport, services and housing. But in Haemophilia Foundation Australia’s previous surveys, many people reported that these schemes do not cover their costs or were inaccessible. Haemophilia Foundation Australia recently sought input from people with hep C and bleeding disorders in documenting the many specific situations where gaps occur. This was used as evidence in their discussions with the Federal Minister for Health. ED This further info is sourced from haemophilia. org.au http://tinyurl.com/4ewwefh
news Patches to help to improve your overall health Australia – Hepatitis NSW welcomes the Gillard Government decision to list nicotine patches on the Pharmaceutical Benefits Scheme (PBS). The measure started from 1 February 2011 and cut the price of patches from around $160 a month, down to around $5 a script. This move significantly reduces the cost of giving up smoking for health care card holders. “This is a very welcome step towards reducing smoking rates among people living with hep C,” said Christina Thomas, President of Hepatitis NSW. Professor Greg Dore, head of the Viral Hepatitis Clinical Research Program at the National Centre in HIV Epidemiology and Clinical Research, said “although there is debate as to the potential harm of smoking in relation to liver fibrosis, there is no debate that people living with hepatitis C should be recommended to cease smoking due to the potential general health benefits that would be derived.” In January Australian Medical Association president Dr Andrew Pesce said listing nicotine patches on the PBS would help thousands of Australians quit the habit and especially benefit people in lower socio-economic status groups who tend to have higher smoking rates than the general population. Matthew Peters, a specialist in respiratory medicine and the chair of Action on Smoking and Health (ASH) Australia, says many people trying to quit do not need the help of these drugs. “You don’t need to use any of these medications if it’s your first serious attempt to quit,” he said. “Until you’ve tried, you just don’t know whether for you it’s going to be easy or difficult.” But Mr Peters welcomes the changes to the PBS, saying the drugs can be useful to people who smoke more than 15 cigarettes a day and have tried to quit in the past without success. • Hepatitis NSW
Aussie hep C death rates disappoint Australia – In Australia over the past few years, death rates in patients with hep C have not increased, but they haven’t improved, either, researchers say. “Although treatment strategies have improved over the past decade,” Dr Gregory Dore told Reuters Health, “stable mortality among people with hep C reflects low treatment uptake.” Dr Dore and colleagues analysed data on more than 42,000 people with hep B and roughly 82,000 with hep C. Compared to the general population, the group with hep B had a marginally elevated mortality rate. But for hep C patients, that rate was around two and half times higher, the authors reported in the Journal of Hepatology. “Improved antiviral therapy uptake and outcomes are required to reduce liver disease related mortality among people with hep C,” Dr Dore said. • Abridged from hepatitiscnewdrugs. blogspot.com (31 Dec 2010) http://tinyurl. com/4o4wfkd
Australia’s missing hep C cases Australia – Around 90% of people with hep C have not received treatment, despite the potential for cure, a report shows. A meagre 2% of the 284,000 Australians living with hep C receive treatment each year, exposing the country to substantial future health costs. The study, by the National Centre in HIV Epidemiology & Clinical Research, found that the low uptake of treatment was at odds with hep C’s status as a curable disease whose treatment costs are largely covered by the Federal Government. • Abridged from news-medical.net (18 May 2010) http://tinyurl.com/2bq7q6s
Drug doctor tested for wrong drugs Victoria – The Victorian doctor suspected of transmitting hep C to dozens of women with hep C had his urine tested for the wrong drugs by medical authorities – potentially exposing his patients to danger. Urine testing up to March 2008 and another test in November last year, did not examine Dr James Latham Peters for all the drugs he had access to in his daily work at Croydon Day Surgery, where 35 women were infected. Sources say that if he had tested positive for drug use earlier, it is highly likely the Medical Practitioners Board would have suspended Dr Peters from working. From 2006 until early 2008, Dr Peters was on the board’s health program for substance-abusing doctors and his urine samples were tested at the board’s direction for drugs including the painkiller pethidine. (In 1996 he was convicted of forging prescriptions for that drug.) But his urine was not tested for the drugs used daily on his patients – an opium derivative called fentanyl and the anaesthetic drug propofol. Medical journals have previously highlighted the fact that drug-dependent anaesthetists are most likely to use the drugs which they have ready access to. At least one previously suspect Australian anaesthetist was specifically screened for both propofol and fentanyl. Police have not spoken to Dr Peters yet, and he maintains he did not know he carried the infection. Those close to Dr Peters say that he feels like a fugitive, even though he has not been charged and has not yet been required to speak with detectives. So far, the Health Department has said that the women with the matching hep C strain were infected in 2008 and 2009. The Age has been told Dr Peters often treated as many as 15 patients a day, and would normally administer an anaesthetic blend that included fentanyl and propofol – he had very limited access to pethidine.
news Second drug doctor at Melbourne clinic Victoria – A second anaesthetist with a drug problem worked at a suburban abortion clinic, the Herald Sun reveals. The second doctor, with a history of drug dependence, worked with Dr James Latham Peters at a suburban clinic at the time dozens of women were infected with hep C. The revelation further calls into question the safeguards employed by Victoria’s medical authorities, and has reportedly enraged victims battling with the disease. The Herald Sun has learned Dr Dale Lynton Schnapp – who has a long history of taking the powerful drugs he used to anaesthetise patients – worked with Dr Peters at the Croydon Day Surgery when some of the women became infected with a strain of hep C genetically matching Dr Peters’ infection. A spokesman for Victoria Police confirmed Dr Schnapp had been interviewed and was helping with the investigation, but said he was not a suspect. Police are yet to lay charges over the outbreak, which has so far infected at least 41 women. Dr Schnapp’s medical registration has been temporarily suspended on at least four occasions since 1990 over drug use, but details of his recent employment and any drug history have been sealed by Victorian medical authorities to protect his privacy. The Australian Health Practitioner Regulation Agency (formerly the Medical Practitioners Board of Victoria) is already facing criticism and legal action for allowing Dr Peters to continue working in spite of his history of drug issues dating back more than a decade before the hep C scandal was uncovered. Dr Schnapp could not be contacted for comment. • Abridged from heraldsun.com.au (10 Nov 2010) http://tinyurl.com/2dfpc6z
• Abridged from theage.com.au (23 Oct 2010) http://tinyurl.com/24j6p3x
news news Backyard body art a Blood bungle puts dangerous game 55 at risk of hep New South Wales – As self-piercing and tattooing kits become more readily available, Eurobodalla and Bega councils have teamed up to warn students about the dangers of doing body art themselves. They hope to introduce workshops in high schools next term that will outline the dangers – a program that will be a first in the state. Batemans Bay tattoo artist Annette Dyvle says she is forever fixing people’s dodgy backyard tattoos and piercings. She was very pleased to hear about the program. Ms Dyvle said cross infections, blood contamination diseases like heps B and C and blood poisoning were just a few of the consequences. She warned people about buying “sterile” products and cheap inks over the internet. “Even if they think they’re getting needles out of sterilised packages, if the nibs aren’t sterile then anything can be passed on,” she said. “You need an autoclave to sterilise the nibs.” Eurobodalla Shire Council has yet to approach schools about the project, but Bega Valley Shire Council’s environmental health coordinator Greg O’Donnell said they’ve had a positive response in their area.
New South Wales – An error with a blood testing device has exposed 55 people to the risk of hepatitis and HIV. The patients were told by the Gosford clinic of PRP Diagnostic Imaging, Australia’s largest private radiology company, that they had all been tested with the same needle. It recommended they undergo hep B, hep C and HIV blood tests. The patients had gone to the clinic for a positron emission tomography (PET) scan used to determine the severity of cancers, neurological conditions and cardiovascular disease. As part of the scan they were required to have their blood sugar levels tested with an Accu-Chek Multiclix, a simple device used on a daily basis by thousands of people with diabeties. It contains several needles in a replaceable drum but instead of switching to the next needle manually after each patient, it was left unchanged between November 28 and January 28. “Our nurse who performed all the estimates thought that advancing to the next needle was automated,” the clinic’s director Dr Uday Ahluwalia said. The clinic sought advice from Gosford Hospital’s infectious disease specialist Dr Deo DeWitt who classified the risk of this type of needle stick injury as “low or very low”.
Mr O’Donnell initiated the project after a Bermagui body piercer contacted him with concerns backyard body art was becoming widespread.
Based on the clinic’s current information, none of the affected patients had any communicable diseases but it is cold comfort for cancer patients such as Anne Young (not her real name).
The program will cover the dangers of selftattooing and piercing and also emerging forms of body art such as dermal implants, where pieces of metal are attached under the skin to allow devil horns or other decorations to stick out, and scarification, where the skin is cut in a certain way to allow scars to form in patterns.
“When I opened the letter I felt like I wanted to fall on the floor, I was sick,” the 54-year-old said.
• Abridged from batemansbaypost.com.au (8 Oct 2010) http://tinyurl.com/2vejp7p Also see “Think before you ink”, page 42. ED
“These are some of the sickest, most vulnerable patients whose immune system is already compromised and we have to be tested for hepatitis and HIV, and then wait three months to do another test.” • Abridged from dailytelegraph.com (9 Feb 2011) http://tinyurl.com/4gta472
A few steps closer to ultimate dream New South Wales – Darren Ellwood is a few steps closer to realising his dream – increased awareness of hep C in Australia. Mr Ellwood walked from Wellington to Dubbo on New Year’s Day to raise awareness about hep C, a disease he had but was cured of. “I was walking in more than 30C heat and on that black road it was almost too much,” Mr Ellwood said. Mr Ellwood said despite his hardships on the first walk he will be doing the other walks he has planned. “I’m determined to continue the walks I’ve already planned but maybe I will use a pushbike instead of walking,” he said. He has planned a second trip from Wellington to Orange and back on 15 January and a third journey, cycling from Wellington to Sydney starting on 1 June. Mr Ellwood said he had many people to thank for helping him on his first walk. “The first people I would like to thank would be 13-year-old Craig Ryan and his father,” he said. “They were so much help, staying with me the whole way and encouraging me to keep going, even when my feet were killing me. Mr Ellwood said the local police from Wellington and Dubbo were great during his walk. “They drove past every so often to make sure I was okay and it was really great.” Mr Ellwood said anyone willing to join him was welcome to. For more information on the campaign, or to join Darren on his next trip, visit his Facebook page “Walk For Hep C”.
news Westmead cannabis liver research New South Wales – The Westmead Millennium Institute is celebrating a major success following the announcement of National Health and Medical Research Council grants for 2011. The institute’s research team at the Storr Liver Unit secured four project grants for work focused on treatments for liver disease, including liver cancer and hep C. One of these projects will study the role of cannabis-like hormones in hep C and other chronic liver diseases. Working on the project will be Dr Mark Douglas, a specialist who runs the viral hepatitis service at Blacktown Hospital. “This is a very interesting project because we have known for some time that in people with hep C, smoking cannabis can cause fatty liver and accelerate liver fibrosis,” Dr Douglas said. “What we discovered recently was that hep C actually makes the liver more sensitive to cannabis and to cannabis-like hormones produced normally in the body. “We believe the hep C virus uses these hormones to its advantage, helping it to replicate better. “The aim of our project is to understand how this works, so we can turn it to our advantage and improve treatments. “We hope that by blocking endocannabinoids in people with hep C, we can improve current cure rates.” In other projects, researchers will investigate the underlying mechanisms for the development of liver cancer, liver scarring and liver disease in hep C. • Abridged from blacktownsun.com.au (23 Nov 2010) http://tinyurl.com/2w2akoy
• Abridged from wellingtontimes.com.au (5 Jan 2011) http://tinyurl.com/47gtozu
news Support groups become drop-in evenings New South Wales – To make sure that Hepatitis NSW’s support groups are sustainable and serve the maximum number of people effectively, we have made a few changes to the groups that used to be held on the third Tuesday evenings each month. These changes should make the groups more appealing, focused, useful and relevant. Groups will now be run four times a year rather than every month (see page 61 for dates and topics). They will run from 6pm (sharp) to 7:30pm and all groups will feature a guest speaker. The guest speaker will present from 6-7pm. The last half hour will be a time for people to chat, have a cup of tea or coffee and ask questions. We’re now calling the groups Drop In Evenings. Like before, the groups are for anyone affected by hep C, and will run at our offices in Surry Hills, with refreshments provided. We welcome your feedback on the Drop In Evenings, so please contact us on the Helpline if you have any questions or comments. • Hepatitis Helpline
Why are the new genetic tests for hep C coming out now? The tests are a result of the new Genome Wide Association Studies that researchers are using to better understand diseases that affect humans. In genetic terms, each of us is made up of 23 pairs of chromosomes, involving billions of genetic “particles” with many millions of variations between individuals. Genome Wide Association Studies allow researchers – using powerful computers – to sample 500,000 or more genetic variations from each person in a study. The studies typically involve thousands of people and things get interesting if particular genetic variations are found mainly in one sub-group of people. With IL28B, researchers gathered large study groups of people who had undergone hep C treatment. The computer mapping showed that most of the people with IL28B genetic variation were the ones who cleared their hep C and had HCV genotype 1. For more information, please phone the Hepatitis Helpline 1800 803 990 (NSW) 9332 1599 (Sydney)
Health literacy: understanding health information
Doctors can take steps in their practices to help the surprisingly large number of people who have trouble comprehending health information.
ake two pills once a day. These directions seem crystal clear. But they sent a man to the emergency department.
In the patient’s native Spanish, “once” means “eleven”. Thus, he believed he was properly following these instructions. He was taking 22 pills a day. This real-life example shows how people’s grasp of health information cannot be taken for granted. The anecdote was included in a new Institute of Medicine report, to draw attention to the health literacy problem. An estimated 90 million Americans – nearly half of the adult US population – have difficulty understanding and acting upon health information. The problem goes beyond simply misreading medication bottles. It impacts every aspect of care, and the results can be utterly devastating. People with poor health literacy are less likely to get potentially life-saving screenings, such as mammograms and Pap smears, or to get flu or pneumonia vaccines. These people are more likely to be hospitalised. They have difficulty understanding informed consent forms or comprehending their diagnoses and medical instructions. They are less likely to know about the health effects of smoking, diabetes and asthma. Low health comprehension plays a role in racial health disparities and could hurt the quality of care and even contribute to medical errors, researchers found. The problem is not just one experienced by immigrants with an inadequate grasp of English. The majority of people with low health literacy are native-born English speakers. Some groups hit hardest are the elderly, minorities and individuals with limited education. But even well-educated people can have trouble understanding difficult medical concepts.
The huge number of people with poor health literacy skills means that the issue is one of concern for all doctors. The scope of the problem is daunting. It touches every type of medical communication – patient history questionnaires, consent forms, medicine labels, face-to-face discussions and educational pamphlets. Patients’ reluctance to admit that they can’t read or simply can’t understand the information at hand makes noticing and addressing the problem that much harder for doctors. Fortunately, there are steps every doctor can take in his or her practice. One of the most effective is the “teach back” method – asking patients to repeat medical instructions in their own words. And there are sources doctors can turn to for help. The American Medical Association has been a leader in this arena. In 1998, the Association was the first US national organisation to recognise that limited patient literacy is a barrier to effective medical diagnosis and treatment. The AMA’s efforts are starting to pay off in the use of more basic language and materials in doctors’ offices. But more needs to be done. The health literacy problem is beyond doctors’ ability to solve on their own. It will take work from the government, health care institutions, academia, businesses, community groups and even patients to bridge the understanding gap. But doctors are in a unique position to have an immediate impact on patients’ lives. With relatively small efforts, doctors can improve health literacy, one patient at a time. • Abridged from amednews.com (10 May 2004) http://tinyurl.com/6lfea9l Health literacy is also an Australian issue. For a local overview, see Dr Robert Adam’s article in Australian Family Physician (March 2009) http://tinyurl.com/4pe2ldh
Looking after yo Your liver is essential to life and good health. Whether or not you have any type of liver illness, it’s a very good idea to look after it. Adrian Rigg speaks to experts and individuals living with liver disease and reports on how we can do just that.
hat weighs about 1.5 kilos, can regenerate itself if it’s cut in half, and makes your life a lot more pleasant? The liver – the largest internal organ of the human body. The liver helps make good things easier for the body to absorb, and bad things less toxic. Because the liver processes much of what goes into the body, it is greatly affected by everything we consume. Diet, body weight and diabetes Our body is reliant on what we put into it, and a healthy liver depends on a healthy diet. Lia Purnomo, a dietitian at The Albion St Centre, Surry Hills, says that eating a variety of foods is important for liver health. “A healthy or balanced diet consists of a regular meal pattern that incorporates the five food groups described in the Australian Guide to Healthy Eating,” says Lia. “It is important to eat food from each of the five food groups every day and have variety within the groups.” She recommends eating plenty of plant foods, moderate amounts of animal foods and some fats in the form of olive oil, avocado, nuts and fish. The liver is not meant to store fat, but when people are overweight or obese, or drink too much alcohol, fatty deposits can accumulate in liver cells; this can damage the liver cells and eventually lead to cirrhosis. “Maintaining a healthy weight is important. Overweight or obese individuals are often found to have abnormalities related to the liver, or fatty liver, and other conditions such as insulin resistance and progression to fibrosis,” says Lia. Insulin is produced naturally by the body to allow glucose to be absorbed, and to maintain blood sugar levels. When this process is not working
properly, more insulin needs to be produced to maintain the same blood sugar levels; if this continues the body becomes more resistant to insulin, which can cause high blood sugar levels and type II diabetes. Diabetes Australia estimates that up to 60% of type II diabetes is preventable. Even people with genetic disposition to type II diabetes can delay or prevent it if they have a healthy lifestyle, especially keeping a healthy body weight. Geoff Farrell, Professor of Hepatic Medicine at the Australian National University Medical School, says that maintaining a normal body composition by avoiding obesity and doing regular physical activity are important factors in keeping your liver healthy. “The main independent risk factors for type II diabetes are family history, obesity – particularly central obesity, and hep C infection,” says Professor Farrell. Central obesity refers to excess fat in the abdominal area, also known as “belly fat”. Professor Farrell says that these risk factors are likely to be interactive, meaning that if there is more than one they combine to increase the risk of type II diabetes to higher levels. While maintaining a healthy body weight is essential for liver health, it is important to get enough protein for growth and repair of all parts of the body. “To help prevent muscle and fat loss, people with cirrhosis need to eat foods high in energy and protein,” says Lia. This is especially important, because liver diseases, including hep C (as well as treatment for hep C), can cause nausea and loss of appetite. Helen Vidot, Dietitian at the Australian National Liver Transplantation Unit at Royal Prince Alfred Hospital Sydney, says that liver-cleansing diets
our liver are not useful, and can actually be harmful for people who have liver disease. “One of the many roles of the liver is to remove waste products and toxins from our body,” she says. “It is not necessary to cleanse the liver as the liver does this itself.” Alcohol Alcohol is generally seen as the single biggest factor influencing liver health. Most alcohol in the body is processed by the liver. It is broken down into by-products which then pass through the kidneys and are excreted. The liver is able to process about one standard drink per hour, and nothing can increase this rate. A large amount of alcohol can temporarily damage the liver, but it is mostly able to repair itself. However, larger amounts over time can cause cirrhosis, or liver scarring; the liver cannot then repair itself.
Image by Darren Hester, via flickr.com
Professor Farrell advocates that people with early stage liver disease follow the Australian Government National Health and Medical research Council guidelines of no more than two standard drinks a day; people with severe fibrosis or cirrhosis, and those who have had problem-drinking, should probably abstain. Reducing alcohol will also help with body weight issues. Sean lived with hep C for 23 years before undergoing successful treatment. Over all that time he did everything he could to help keep his liver healthy. “I kept my alcohol intake to a low level and I’m sure this has helped my liver enormously,” he says.
feature Monitoring liver health Everyone benefits from having a good relationship with their GP; this can help anticipate health problems and prevent them where possible. Your GP can keep on top of issues that affect your liver in several ways, including: running blood tests to detect the signs of fatty liver disease and diabetes, even if you have no obvious symptoms; and recommending if you should be vaccinated against hep A and hep B, which both affect the liver (all people with chronic hep C should consider hep A and B vaccination). Being aware of your liver health enables you to take control of it; this includes doing what you can to keep your liver healthy, as well as staying aware of any changes in your wellbeing. Everyone who knows they have liver problems, even if they feel well, should be referred to a liver specialist so they can get appropriate, individualised treatment.
Professor Greg Dore, Head of the Viral Hepatitis Clinical Research Program, National Centre in HIV Epidemiology and Clinical Research, University of New South Wales, says that medical professionals should discuss alcohol intake and body weight with liver patients as part of overall treatment. He says that an individualised approach is needed, as people may be at different stages of liver disease. “The key issue for the doctor-patient relationship for all this is an open, honest discussion free of stigma and discrimination from the practitioner’s perspective. Many patients may need to just ‘shop around’ or enquire until they find an appropriate practitioner,” says Professor Dore. Rob, who had hep C and successfully completed treatment, understands the value of this relationship. “The care and support I had from the staff at RPA was nothing short of amazing,” he says. “They were genuinely caring, supportive and proactive in any capacity. I was offered immediate support from my nurse at any time.”
feature Hep C treatment
For people with hep C, treatment is one of the most important things that can improve liver health in the long term. Treatment can clear their hep C, or at the very least, give their liver a “break” and help protect it from further damage. Because the liver can repair minor damage, eradicating hep C can prevent cirrhosis and liver disease.
Some people find that using complementary medicine helps to improve liver health or reduce the symptoms related to liver problems. A complementary medical practitioner can tailor treatments to your needs; they will need to know about all medications you are taking to avoid complications. It is equally important to consult your GP and liver specialist before undertaking complementary therapies.
Before beginning treatment it is important to make sure that the time is right; this includes preparing for the possibly hard times ahead. When Sean was considering hep C treatment, his GP told him that nutrition was especially important.
Image by Physicians for Human Rights - Israel, via flickr.com
“He said that my body would be undergoing enormous strain and I should ensure that I had lots of options for food easily available,” said Sean. He found that smoothies were a good way to get nutrition as well as fluids, which are very important for maintaining liver health.
Ses Salmond, Naturopath and Homoeopath at the Leichhardt Women’s Community Health Centre, sees a lot of people with hep C and other liver issues who use complementary therapies to improve their health and wellbeing. “Complementary therapies or medicines are a range of alternative or natural therapies which aim to restore balance and vitality by treating the person as a whole and support the body’s inherent ability to heal itself,” she says. Ses says that complementary therapies can help reduce liver inflammation, improve overall liver function, support the immune system, reduce fatty liver and help with symptoms of liver disease – such as fatigue, nausea and abdominal pain. Milk thistle is one of the most commonly used herbs for promoting liver health. Ses says that milk thistle can: reduce hep C viral load (used in conjunction with combination therapy); improve survival in people with cirrhosis caused by excess alcohol intake; and reduce liver inflammation, fatty liver and insulin resistance. As Helen Vidot points out, unlike many other organs the liver does not age and its size and function do not change as we get older. If treated well, your liver will remain healthy and continue to work for you for life. For more information about looking after your liver, phone the Hepatitis Helpline on 1800 803 990. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: email@example.com
Stephen’s story: cli S
ix months after finishing hep C treatment, Stephen climbed a mountain. It was his way of celebrating clearing the virus, and beginning the next chapter in his adventurous life.
Stephen pictured on the peak of Nt Mera. Image supplied by Stephen.
“I’ve always been pretty active – bush walking, abseiling and bike riding in the Blue Mountains and Kosciuszko areas,” said Stephen.
imbing a mountain In 1998 Stephen had gone to his GP for some routine health tests. The doctor asked him to come back for some more tests, which showed that he had some liver dysfunction. “It turned out I had hep C,” he said. ”I didn’t worry too much about it because I wasn’t sick – so I carried on with my life.” A few years later he went to see another doctor and mentioned the hep C. “The doctor told me we can do something about it,” said Stephen. “He’s a really positive guy who doesn’t muck around, and he’s really interested in diet and its effects on health. He really encouraged me to look into treatment.” The doctor referred Stephen to Westmead Hospital, where the opportunity to be in a treatment trial came up. Stephen was still feeling well, but decided to join the trial. Although a liver biopsy is no longer required for government funded hep C treatment, Stephen had to have one before starting his treatment trial in 2007. “I wasn’t real happy about getting a liver biopsy. I wasn’t afraid of the results – I like to know about things the way they are – but I wasn’t looking forward to it. I didn’t enjoy it, but I didn’t have too much pain either,” he recalled. With the biopsy issue out of the way, Stephen was ready to do everything he could to successfully complete the trial. “I had to inject once a fortnight and take a tablet every day for six months,” said Stephen of the trial. “Because of the work I do I’m used to following strict procedures, so I found it easy to be 100% compliant – if they told me to have my injection at 6pm on Wednesday, I did it at 6pm on Wednesday.“ During treatment Stephen didn’t experience any severe side effects, but had some rashes, and some nausea and diarrhoea: “Halfway through treatment I went skiing with friends, but had to come home early because I was feeling pretty unwell.”
That was the only time Stephen had felt really ill due to hep C or the treatment. “I felt a bit sorry for myself at times,” he said. “I found myself lying in the bath trying to relax and I thought ‘you wimp’. I didn’t want my life to be like that, and I was really hoping the treatment would work. But then I just kept going.” After finishing treatment Stephen read about a group expedition to Nepal. “I was feeling pretty good by that time and I wanted to celebrate completing the trial,” he said. “All my tests were clear so I decided to do the trip.” The aim was to conquer Mera Peak, in the Himalayas. “Eight of us set off on the hike, but only two of us made it to the top,” he said. “The others had altitude sickness and had to turn back.” In 2009 Stephen climbed Stok Kangri, the highest mountain in the Stok Range of the Himalayas. He is currently tackling his latest challenge, climbing Island Peak in Nepal: “We’re going to take a route that takes us higher and lower for about three weeks, so by the time we get to climb the peak, we’ve adjusted to the altitude – it’s also a good chance to get fit.” Since clearing hep C his health has been good. “I don’t think about it now,” he said. “My liver’s in good nick and I feel like I could live to 90.” Stephen said that the three most important things for getting him through treatment were compliance, diet and positive thinking. “I’ve always had a pretty healthy diet, so that wasn’t a problem. Whether it’s climbing a hill or dealing with health issues, focusing on the goal is really important for me; thinking about where I want to end up and not worrying about things I can’t control.” •
Stephen, NSW Stephen’s story was written by Adrian Rigg, who regularly writes for Hep Review magazine. ED Hep Review
The CHI study: understanding Researchers are inviting Australians to take part in a national online study on the health and social impacts of living with hep C.
So what’s this CHI Study all about? What’s it got to do with hep C?
Why? Surely we know about this stuff already? Someone is always studying us.
The CHI study – which we pronounce “KAI” – not that it matters though – stands for Charting Health Impacts. It’s not really about hep C itself, it’s about the lives of people with hep C. What people with hep C experience. Relationships you have. The decisions you have to make. What you learn about yourself. The good and the bad. Things like social stigma. The negative impact on friends and family. But also your ability to demonstrate your inner strength. That sort of thing.
Well, no and yes. There are a lot of hep C studies, but the thing is, we don’t know much about the social experience of living with hep C over a period of time. It is the first study of its kind.
Rightio, so CHI, however you say it? Or Charting Health Impacts? Well we actually didn’t want to have the word ‘hepatitis’ in the title. Lots of people with hep C keep it to themselves. So we thought if we call the study CHI its much easier for people to be involved and talk about it, pick up a card, or brochure, and not worry about their privacy.
Other hep C lifestyle studies merely look at the events that are happening at a particular moment in time. But things can change. Life moves on. This study acknowledges this. CHI looks at how things change by hearing from people at regular stages, like every six months. So we get a feel for how you have been able to deal with things. How your thoughts have changed? Strategies about thinking, choosing and exploring treatment options. Friends and moods. Anything. We really want to know! OK. So what exactly do you want to know?
Fair enough. So is it just another study though, like all the rest of them?
Basically, we want to hear about the lives of people who have hep C. We want to know how having hep C has affected you. What choices you have had to make? What have been the bad things and challenges? Have you experienced any negative reactions or stigma? Have relationships suffered?
Definitely not. CHI is NOT a clinical study. It’s not trialling drugs, and there will be no poking, prodding and preaching by people in white coats! This is a study where you get to tell us about your life, and what its like to have hep C.
On the other hand, we want to know about positive things too. Some people actually have improved relationships and communication with family and partners. And many learn a lot about themselves.
Images by Jiva, via flickr.com and Paul Harvey.
hep C is the answer
Where do people go to fill out the survey?
Well I’m kind of interested. So what next?
It is SO easy. All you need is the internet. Fill out an anonymous survey online. In about six months time you will get an email asking you to fill out a new shorter survey. You can do it at home, at the local library, at work or the job service centre. Anywhere.
Check it out, it’s really easy. Let your experiences count. Get on the web. Go to www.chistudy.org.au • The CHI Study research group
Charting Health Impacts
The CHI (Charting Health Impacts) study is about how hepatitis C affects people’s lives. The study follows a group of people over time, looking at all the health and social aspects of life - so that community organisations, doctors and governments learn what it is like to live with hepatitis C.
Joining the study involves taking an anonymous survey online. We then contact you in 3-6 months so you can tell us how things have changed for you. If you have ever been told that you have hepatitis C and you want to find out more about CHI, you can check out our website at www.chistudy.org.au Let your experience count and let us know about how hepatitis C has affected you. Hep Review
Meg’s story: a very public
ometime in the chaotic hours after my birth, after an ambulance rushed me to hospital (in Hanover, New Hampshire, USA), after doctors re-inflated my lungs, arranged my tiny body in an incubator and threaded tubes under my skin, I received a few tablespoons of someone else’s red blood cells. For two hours, the transfusion dripped into my body, delivering the oxygen I needed to survive. It was one of many drastic measures doctors took in the first few weeks of my life, measures that defied the odds given to a premature infant in 1978. When I finally went home, everyone who knew me was ecstatic. I could see, hear, breathe. Miracles, really, considering the state of neonatal care in those days.
There have been parties, pictures, reunions every summer in Hanover with other alumni of the children’s unit at Mary Hitchcock Memorial Hospital. No one – not the doctors, not my parents, certainly not me – suspected that inside my veins a virus was quietly replicating itself, mounting an attack on my liver that would last for decades. The oxygen those red blood cells delivered probably kept me alive, but the transfusion also infected me with hep C, a life-threatening virus that afflicts at least three million Americans, or roughly 1% of the US population, and 3% of the population worldwide. It also made me part of a long-brewing public health crisis that, unless something changes soon, will cost billions of dollars and millions of lives. Hep C is often called “the silent epidemic” because many people have no idea they’re infected, and most people have never heard of the disease. But silent doesn’t mean it’s benign. Left untreated, it can cause serious liver damage and liver cancer, and it is the leading cause of liver transplant in the USA. It kills about 10,000 Americans a year, and the National Foundation for Infectious Disease predicts that number will triple in the next 20 years as more and more people with hep C reach end-stage liver disease. The economic costs are staggering, too. A report released last year by the actuarial firm Milliman Inc. estimates that hep C patients in the US require about $30 bill (A$30.7 bill) in medical care annually. The price tag will grow over the 28 www.hep.org.au
next two decades, according to the study, costing public and private health insurers $85 bill (A$86 bill) a year by 2027. Because the majority of hep C-positive Americans are baby boomers, Medicare will be responsible for nearly half the bill.
Response to the epidemic has been slow. About the same time I celebrated my 10th birthday, scientists identified hep C as a unique disease. Four years later, a test was perfected to screen contaminated blood and blood products. I was in college by the time the government started to develop a prevention strategy. Throughout my 20s, I witnessed dozens of failed attempts to build awareness. Congress has debated the issue repeatedly, but efforts to address hep C continue to receive limited public support. Medical literature describes the hep C virus as “brilliant” and “elusive.” It’s been tough to isolate, tough to monitor and, as I have become intimately aware, frustratingly tough to kill. Treatment is improving, but it still isn’t very good. The most typical approach involves months of drugs that cause debilitating side effects and, in many cases, offer a 50% chance of a cure. There is no vaccine, and transmission remains common among people who use drugs. Public knowledge of the disease lags, too. Plenty of high-profile people have talked about their hep C status over the years: Naomi Judd, Pamela Anderson and Evel Knievel. Last December, US Rep. Hank Johnson of Georgia announced he’s battling the disease after the physical side effects of antiviral treatment raised questions about his health. Despite these celebrity disclosures and a fair number of organisations dedicated to raising awareness of liver ailments, hep C has not garnered much media attention. That makes living with the virus pretty damn lonely. Tell someone you’re battling cancer, or Parkinson’s disease or diabetes, and they’ll think you’re brave. Tell someone you’ve got hep C and there’s a good chance they’ll wonder what you did to deserve it. I have been whispered about, unceremoniously dumped by a boyfriend and accused of lying about drug use. I’ve watched nurses back away and friends stare in shock. One college roommate made a beeline for the bathroom to wash her hands – and told the entire dorm to avoid me.
hep C history
Still, hep C carries a brutal stigma – because of its association with drug users. That stigma has affected awareness, screening and, perhaps, resources for research. On a personal level, it has complicated my search for a cure. In the years since I became aware of my infection, I’ve bounced from denial that I had a life-threatening illness, to frustration at a lack of treatment options, and to anger that half the world seems to equate hep C with leprosy. I have visited dozens of doctors, specialists, herbalists and healers, and suffered bouts of panic that I will lose my friends, my health insurance, my job. Halfway through 2008, fear eclipsed denial, and I enlisted in a clinical trial. Under the bright lights of an exam room, I put my signature on documents that would, basically, loan my immune system to science for the better part of two years. In return, I would become one of the first human beings to receive a new class of antiviral drugs doctors hope will cure millions of people living with hep C. Blood work followed paperwork, then physical exams, interviews with doctors, a liver biopsy. It became increasingly hard to convince myself that I wasn’t sick, but I also stopped feeling so alone. Hep C became more than my secret problem, more than my private shame. On every visit, members of the research team talked about their work. I’d long known that I was not a typical hep C patient, but what they told me about the prevalence of hep C among the homeless, the drug dependent and the poor broke my heart.
Image by Paul Harvey.
Yes, hep C is a giant public health crisis, but it’s also pretty hard to transmit. The virus spreads through direct blood-to-blood contact. Most people get it from sharing needles or, like me, receiving tainted transfusions. Other possible modes of transmission include unsterile tattoos or piercings, and occupational needle sticks. Sexual transmission is rare, although possible if one partner is exposed to the other’s blood.
I’d already been reading everything I could find about hep C, but I intensified my efforts. I took notes, bookmarked websites, set up a Google alert for “hepatitis.” My brother, a doctor, sent me articles from medical journals and patiently explained things like viral reproduction. Know thy enemy, I thought. Besides, acting like a reporter is a lot easier than being a patient. So I requisitioned my medical records; all 391 pages. “All of them?” asked the clerk, peering up from her computer screen. “Uh-huh.” I smiled and nodded. It had taken me close to a half hour to find her basement office. I didn’t want to return. She told me the price: $205 (A$207). I wrote down my billing address. Six weeks later, the records, including my blood transfusion order, arrived in a box the size of a milk crate. Know thy enemy – the wait and the money were worth it. •
Meg Heckman, USA Meg Heckman is a staff writer with the Concord Monitor newspaper, New Hampshire, USA. Abridged from http://tinyurl. com/4uomdv4 (12 Dec 2010). If you find Meg’s story interesting, let us know and we’ll carry more of her online story. Email firstname.lastname@example.org
Hepatitis B: talking about test Hep B causes of 80% of the world’s liver cancer. Jen Johnson explores some of the issues around hep B related health care in Australia.
n April 2010 the first National Hepatitis B Strategy was released, signifying a major landmark for Australian public health policy and for the 185,000 people in Australia estimated to be living with chronic hepatitis B (hep B). Two years ago, the first National Hepatitis B Needs Assessment offered a glimpse into the needs and experiences of people in Australia living with chronic hep B. The goal of the first National Hepatitis B Strategy is to reduce the morbidity and mortality caused by hep B – pre and post test discussion during screening will play an essential part in achieving this goal. Pre and post test discussion Pre and post test discussion is standard practice for HIV and hep C testing and plays a valued role in supporting individuals and limiting the wider impact of these diseases. Because of this a similar protocol is increasingly being implemented in hep B diagnostic settings. Pre test discussions help people to gain a basic understanding of the virus for which they are being tested, to identify and understand their risk factors, and most importantly to prepare people for the possibility of a positive test result. In the event of a person testing positive, post test discussions focus on immediate support needs, with a follow up consultation to help the newly diagnosed person to understand the meaning and implications of their test result. In the event of a negative test result, post test discussions focus on the possible need for follow up testing, as well as the very important subject of prevention for those with ongoing risk factors. One of the biggest challenges with pre test discussion is that, compared to the overall number of tests, the number of positive results is very small. This ratio may discourage clinicians from taking the time to conduct these discussions before each and every test, especially in low prevalence settings. However, the only way to minimise the distress and confusion of a positive diagnosis and maximise the opportunity for 30 www.hep.org.au
support and referral is to ensure that adequate pre test discussion is conducted with every person being tested. Considerations for hep B pre and post test discussion While there is no standard recipe for hep B pre and post test discussions, there are three key ingredients. The quantities used will differ from patient to patient, but all discussions should include risk assessment, plain language information about hep B, and post test follow up and referral. Pre test risk assessment A pre-test risk assessment will provide the opportunity to establish the person’s level of risk for acute and chronic hep B. People who may have acquired hep B at birth or early childhood have a much greater risk (90% and 30% respectively) of developing chronic infection than those who may have acquired it as adults (5%). In order to gain a clear picture of a person’s chance of testing positive for chronic hep B, the risk assessment should follow two lines of enquiry. Firstly, the risk assessment must consider the likelihood that the person may have acquired hep B as a child. Were you or your parents born in a high hep B prevalence region, for example, China, South East Asia, Pacific Islands, Africa? Does anyone in your family have hep B? Are you of Aboriginal or Torres Strait Islander Background? Secondly, questions pertaining to the risk factors associated with adult-acquired hep B should be asked. Have you been in close contact with anyone with hep B? Have you been engaging in any unprotected sex or unsterile injecting? Have you recently travelled to a high prevalence country? Such questions, in addition to enquiries about vaccination history and current or past symptoms of liver disease, are essential for the clinician to be able to assess the likelihood that the person might have chronic hep B, and begin to prepare them for this possibility.
Plain language information The next essential ingredient for pre-test discussion is the provision of plain language information about the meaning of chronic hep B. Clinicians can measure the quantity of information required based on the risk factors discussed. It is vitally important that any person who may have acquired hep B at birth or during childhood is provided with clear information about hep B. And it is important to check that they understand the information and its meaning. This might include plain language explanations, along with provision of resources (in English or their preferred language). For example, a clinician may say, “testing positive for chronic hep B means that a person has a long term liver infection that is common in many parts of the world. In most people it is manageable through regular testing and treatment, but for some people it can result in serious liver disease and illness.” Information about hep B transmission and vaccination are also important. The notion of “plain language information” about hep B can be challenging for clinicians and affected communities alike, as hep B natural history, serology and treatment are quite complex. Nonetheless, people must be given the opportunity to consider the impact of a potential diagnosis before they receive their test results. Post test discussion: follow up and referral Although hep B testing is complex, there are four basic outcomes from the full panel of hep B tests. These are chronic HBV positive, acute HBV positive, HBV negative from vaccine immunity, and HBV negative but still susceptible. Discussions about hep B prevention with those testing positive for hep B are simplified by the availability of a safe and effective vaccine. For people who test negative but remain susceptible to hep B, post test discussion about current risk factors will provide insight into the appropriateness of vaccination.
Image by Paul Harvey.
Being diagnosed with chronic hep B diagnosis can be shocking, but adequate pre test discussion can help reduce this shock. While it is ideal that clinicians set aside some extra time to deliver this diagnosis, it is important to remember that people may be unable to take on much new information when they first learn their results. A follow up appointment a few days later may be a far more effective means of giving essential post test information. In addition, it allows for time to arrange an interpreter for people if they choose. The initial management of a chronic hep B diagnosis is, for many people, psychosocial. It is important that people who test positive for chronic hep B understand that managing their condition involves regular blood tests and checkups. It is also important to begin the process of referral to a specialist, provision of information and support regarding the vaccination of their household and other contacts. However, these things are best done at a pace that is sensitive to people’s individual needs and concerns. Beyond 2010 The goal for the first National Hepatitis B Strategy is to reduce the impact of hep B in Australia. This will mean an increased focus on screening people from high prevalence communities, vaccination, and supporting people through diagnosis, referral and GP shared care. The natural history, testing and treatment of chronic hep B are complex, which only adds to the uncertainty and confusion that people experience when coming to terms with a diagnosis. Hep B pre and post test discussion helps people understand their diagnosis, and the critical relationship between self management, regular check ups and living well with the condition. • Jen Johnson is BBV Program Coordinator, Community Liaison and Education Unit, Australian Research Centre in Sex, Health and Society at La Trobe University, Melbourne. This is an abridged version of a referenced article, available via email@example.com Hep Review
When veins have been blocked the blood still needs to get back to the heart and has to find another way. Veins are connected at lots of junctions - so this means taking a different route and going up veins that are further back in the system.
The Appearance of â€˜newâ€™ Veins
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These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.
Safer Injecting Procedures
a while they usually block up within a because the clots that form to stop the are big enough to stop the flow of blood.
The Hep Review harm reduction poster, March 2011 (#27). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au
used for few hits bleeding
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Peter’s story: 52 and liv M
y name is Peter. I am 52 and living in Sydney. I grew up in Bondi and started drinking and drugging and partying from a young age. I started shooting heroin when I was around 17 and before long I was a full blown addict. My life went downhill in all areas very quickly. My parents were Italian and I was the only male son and was given everything on a silver platter. My parents gave me all the opportunities and chances. I went to prison several times from the age of 20 and probably served in total over three years. I tried marriage three times and have failed three times. I was diagnosed with hep C in the early 90s and was quite frightened at what my future held. This didn’t stop me drugging and drinking and I became very ill from the effects of my lifestyle. I did a geographical sea-change to the Gold Coast and nothing changed. I was put onto methadone around 1997 but continued to dabble for a few more years. I stopped injecting drugs around 1998. I don’t know how or why, but I guess I just got sick of it. The thought of being on methadone long term like some of the people I knew (some 30 years), was enough to motivate me to slowly reduce my dose over four years. I moved back to Sydney with my third wife in 2000, and I jumped off methadone in January 2005. I still smoked pot and drank with a vengeance.
My wife left me in June of the same year, and I became suicidal and was drinking two bottles of Bundy a night and smoking nearly half an ounce of pot, and this was my rock bottom. I made it to a 12 step program later that year, a shaking shivering mess.
I have remained abstinent from all drugs and alcohol for close to five years and in that time I have confronted my health problems one at a time – including my hep C. I first approached the team at the Prince of Wales unit, and I failed to follow up as I was terrified of the side effects of treatment. I started treatment in April 2009, fully armed with as much information as possible, the support of work, and the services of a shrink as well as the support of the POW team. I had genotype 1 so it was 48 weeks of treatment and I was aware that my chance of clearing the virus was not much better than 50%, but I had to do this. I wanted to be around for my daughter. I did everything I had to, taking the pills on time and injecting at the same time every Friday. It was probably one of the hardest 12 months of my life. I was always shivering cold, my body ached all over all the time, I had chronic diarrhoea and lost 14kg. I was depressed and had mouth ulcers for the last six months. The hardest part was not being able to have any social life. I know my friends were great with me, but they really didn’t know what I was going through. I was able to work for most of the 12 months, but did have my days cut shorter and days off when needed.
Image by Simon Lieschke, via flickr.com
My bosses were very understanding and supportive even though they didn’t know what condition I had. I completed my treatment in March 2010, and I know I had given it my best shot. The result was out of my hands. I planned my first trip to Europe for July, as a reward for getting through treatment, with the resolve that if I did not clear it, I would do treatment again when I returned from Europe.
The Little Book of Hep C Facts
I got the all important “all clear” at three months – two days before I left – and I really had a good feeling that I was going to remain clear at the all important six month mark. I am back home and, yes, I have cleared the virus. I was told that of the four people who started treatment at the same time as me, there was only me and one other who cleared it. Although I think I would have been quite shattered had I not cleared it, I was determined to keep trying.
We recently covered hep B facts but do you know your facts about hep C? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep C Facts, Hepatitis C Council of South Australia.
If I can offer any advice to someone thinking about treatment, it’s that treatment is not easy, but it’s definitely ‘doable’. With the right support in place and good preparation, your chances of getting through it are much better. I also believe that my positive belief really helped. It is amazing what power our minds have.
• Hepatitis C is a blood-borne virus that causes inflammation of the liver. Over time, this may lead to scarring of the liver and serious disease.
I cannot thank enough the team at POW; Prof Reardon, Cherie and Shona. Without their support I wouldn’t have made it through.
• It is possible for someone to have more than one strain (genotype) of hepatitis C.
Now I am living…. •
• There are many strains (genotypes) of hepatitis C. The most common genotypes in Australia are 1, 2 and 3.
• Hepatitis C is totally different to HIV/AIDS. Infection with one of these viruses does not lead to, or protect against, infection with the other. • Hepatitis C is transmitted by blood-toblood contact. • In Australia, the most common way hepatitis C is transmitted is by sharing injecting equipment, including spoons, tourniquets and filters. This is the first instalment of our excerpts from The Little Book of Hep C Facts. Please see our following editions of Hep Review for all 34 hep C facts – or check out the booklet at http://tinyurl.com/2en75mx
Image by semireal_stock, via www.deviantart.com
feature Choice busts weight loss myths
onsumer group Choice has launched a campaign to dismiss weight loss myths that, it says, hinders rather than helps people to shed kilos. Choice spokesperson Ingrid Just stressed there were no “quick fixes” for losing weight and said many popular theories did not hold up in the long-term.
Aboriginal people’s access to treatment services
his report was undertaken by Hepatitis NSW and intended to identify the stateof-play for hep C treatment for Aboriginal people in NSW. The mapping focussed on obstacles to service delivery, examples of good practice and suggestions on potential solutions.
“Miracle diets and advertisements for quick fixes sell books and fill magazines especially this time of year,” she said.
Its key purpose is to inform Hepatitis NSW’s business plan. The mapping was conducted between August and December 2009.
“Many of these weight loss tips are short-term fixes that won’t do you much good in the long run.”
Interviews were undertaken by email, by phone, in person and opportunistically, when Hepatitis NSW staff were in contact with Aboriginal health workers. Questions were based around hep C testing, treatment and support for Aboriginal people.
Dismissing suggestions that carbohydrates are fattening and eating a big meal at night causes weight gain, Ms Just said having a balanced diet with occasional treats and physical activity was the best way to lose weight and maintain it. “People are being bombarded by unsubstantiated weight loss tips and tactics that make big promises,” she said. “It’s become very difficult to know what to believe. “As boring as it sounds, to lose weight you need a combination of healthy eating – including the occasional treat – varied physical activity and regular sleep,” she said. The consumer group’s nutritionists said misconceptions about weight loss had resulted in people putting their faith in “magic pills” and not getting enough nutrients or trying to lose weight using techniques with no evidence of efficacy to support them. • Abridged from http://www.pharmacynews. com.au/getattachment/24d8437a-2f5c-40659c31-5e11da4707c8/pdf.aspx (28 Jan 2011) Staying healthy is important for everyone but, especially so, for people with liver disease. ED
In all of the Area Health Services contacted it was reported that very low numbers of Aboriginal people have been undertaking treatment. Some individual treatment services, though, have had and are continuing to have success in hep C treatment for Aboriginal people. The mapping also showed low referral rates from Aboriginal Community Controlled Health Services to S100 treatment providers, gastroenterologists or Liver Clinics, however, these referrals are generally not well recorded. Strategies that are generally effective at improving access for mainstream health consumers don’t necessarily work well in a hep C context, and particularly for Aboriginal people. A number of health workers said that due to hep C predominantly being contracted through drug use, working in collaboration and in partnership with AOD services is a sensible approach to addressing the needs of at risk or hep C positive Aboriginal persons. • By Kerry Walker, Hepatitis NSW. For more information about the report, please contact our office. ED
opinion Renewed calls for ACT prison needle exchange
epatitis Australia congratulates Chief Minister Stanhope and Minister Gallagher and welcomes their support for considering a needle and syringe program in the ACT’s prison, the Alexander Maconochie Centre (AMC). As the Canberra Times 5 January editorial ‘Needleexchange program needed’ notes, a needle and syringe program should be implemented sooner rather than later. The longer the delay, the worse the personal and public health impacts and costs will be. Over 50% of male inmates and around two thirds of women prisoners in the AMC have hep C. This compares with a prevalence rate in the broader population of 1-2%. Prison officers should be assured that all the evidence from the more than 90 prison-based needle exchanges in Europe and Central Asia shows that not only is prisoner health improved, but also that prison officer occupational health and safety is improved by having regulated needle exchange programs in prison. That is because, with a prison needle exchange, contaminated needles and syringes are taken out of the equation when it comes to searching for contraband. Under the current system in all Australian prisons, used needles and syringes are carefully hidden, and are often found by prison officers, sometimes causing needle stick injuries. With some prison needle exchange models, the needles are required to be kept visible in designated places. Thus, there is no need to hide them and authorities can continue to search for real contraband with a reduced risk of needle stick injury. Prison officers should be additionally reassured by the fact that there is no recorded instance in any prison in the world where a regulated (that is, sanctioned) needle exchange operates, of prison officers being attacked or stabbed with a syringe. Far from sending the wrong message, prison needle exchanges send the right message: that we care about the health and rights of all our citizens, and that we care about broader public health. As an Australian government-funded University of NSW research report noted in 2009: in the broader Australian community, where the same drugs circulate and same drug laws exist, needle and syringe programs directly prevented 97,000 hep C
and 32,000 HIV transmissions in the decade from 2000-2009. In turn, this saved lives, and prevented $1.4 billion of tax payer funds from being spent on HIV and hep C treatment costs. Policy makers, health professionals and those who value evidence do not say that general community needle and syringe programs “send the wrong message.” There needs to be a more equitable balance of investment in the three pillars of Australia’s National Drug Strategy: supply reduction, demand reduction and harm reduction. Opponents of prison needle exchange strongly support investing more in supply reduction in order to keep drugs out of prison. The facts are that all the evidence in the world shows that whatever governments do to exclude illicit drugs, some people will find ways of bringing them in and using them. Harm reduction, of which needle and syringe programs are an example, is the pillar that has not been fully applied yet in Australian prisons. We need to look to countries overseas and draw from their experiences showing that prison based needle exchanges work. They add value. They help reduce harm. They help improve prisoner, prison officer and public health. We encourage prison officers to examine this evidence so that their fears can be allayed. It is not enough to just say no. Prison officers need to come to the table, voice their concerns, discuss the evidence and be part of the solution. The evidence in support of the ACT Ministers’ statements is compelling on personal safety, occupational health and safety and public health grounds. The obligations that the ACT Government has assumed in adopting the 2009 Human Rights Act, and the Chief Minister’s ongoing commitment to those obligations means that a final decision supporting a trial needle and syringe program at the AMC must now be made. We welcome Chief Minister Stanhope’s unambiguous statement that the ACT has a “health and a moral responsibility” to consider a prison needle exchange in the AMC. This shows welcome leadership. True leadership will happen on this issue only when the ACT introduces Australia’s first prisonbased needle and syringe program. • Stuart Loveday, President, Hepatitis Australia. Abridged from The Canberra Times, 12 Jan 2011.
All you need 2 do is
o you know someone affected by the criminal justice system? Do you have a family member who is hep C positive but no one is talking about it? Do you feel you’re being judged when you disclose your hep C status? Are you in gaol and have questions about hep C? Do you need specific information about hep C and prisons? All you need 2 do is ask is here for you. I am Robert Barco, ex-inmate and writer. I will answer your questions and research your topics. I will try to answer all who write in or send emails. Remember guys, I am here for you. I understand the issues, having experienced them for most of my adult life.
Nurse-led model of care for hepatitis Hep C treatment was once a headache for everyone involved. It meant testing, waiting, putting your name on a list, then escorts to The Bay and back – possibly not being seen by anyone – and then doing it all again and again; and, in the end, if you were lucky you may have got treatment. That has all changed and the hep C strategy is comprehensive and multi-disciplinary. Every NSW prison has a clinic capable of organising hep C testing, and eight centres can provide treatment through visiting doctors. On top of this, Justice Health’s evolving nurse-led model of care (NLMC) means better access for more prisoners. Above image provided for All you need 2 do is ask by Long Bay MSPC inmate.
Every person coming into prison has a reception health assessment where screening for hep C is recommended. Initial screening is voluntary and, at any time during their sentence, prisoners can arrange an appointment and talk to a Public/ Sexual Health Nurse (PSHN) about screening and potential treatment. The nurse, who will have had special training in hep C care, will discuss the pros and cons of testing and help to explain what test results mean. The nurse-led model of care developed by Justice Health is slowly being rolled out to correctional centres in NSW. For people classified to the gaols that currently have the NLMC it means that as a health consumer, you are able to access treatment in a way which is quicker and much more comprehensive. The nurse will assess you and then he or she is able to liaise with other specialists and doctors without you having to attend, which for inmates means no more of those unwanted escorts to Long Bay just to see a doctor. Under the nurse-led model, everything required to set up a treatment pathway is taken care of by the nurse. Access to treatment has been streamlined under this model in terms of waiting lists, appointments etc. It is as simple as the patient putting his or her name down to see the nurse, and the rest is done by the specialist nurse. At centres that currently have the NLMC, patients do not have to leave – they can be assessed by the nurses, who commence the treatment and monitor the patient while on treatment. The patient doesn’t need to see the Visiting Medical Officer at all – the VMO writes the script after discussing the patient’s assessment with the nurse.
Don’t cuff yourself
Some centres will still have a visiting specialist; patients in these centres will be assessed by the nurses, but will also see the specialist (these patients will not be part of the nurse-led model of care). In some cases, a video conference may be used, involving the doctor, patient and nurse.
I know many guys from the inside who undertook combo therapy and did well. The nurse in charge of treatment is a wonderful person and helpful. You don’t have anything to lose by going to the clinic and asking the public health nurse about treatment.
While the NLMC is only in some gaols at the moment, Justice Health plans to roll out the model to many more gaols over the next three years.
Hep Review magazine is easier to get if you fill out the zero fee membership and have it posted directly to you. I will arrange for a return envelope and membership form to be sent to you.
Depending on their health, some prisoners who are considering hep C treatment will be categorised as needing to see the specialist. The majority of prisoners, though, will not be categorised as needing to see the specialist – which greatly benefits those prisoners at centres where there is no visiting specialist.
Reply to reader Dear Anonymous (Hep Review, ED71, page 5) Eight years is a long time. I do understand how that feels as I spent close to 17 years inside. It is great to hear that Hep Review is being passed around and that the reading is interesting. We try our very best to ensure that it is interesting, factual and up to date. Thank you for your letter and sorry we had to edit it down for space reasons. Yes there are new hep C treatment drugs on the way. However, as you have hep C genotype 3 they are not for you. The new triple combination therapy drugs are just for people with hep C genotype 1: the harder-to-treat kind. With genotype 3 you would be likely to need only six months on treatment. And the response rates – or chances of cure – are around 80%. The effects of treatment vary from one person to the next so while there are some horror stories out there, the overwhelming majority of people get through treatment without too many problems. Remember you need to do what is best for you.
Your letter was warmly received. I understand what you are saying. The important thing is living positively with the hep C virus. I hear what you’re saying too about the injecting that goes on inside. Risk behaviours happen BUT THEY CAN BE MINIMISED AND MANAGED. Hepatitis NSW and many other agencies will continue to advocate for an expansion of harm reduction services inside prisons, and that includes calling for pilots of needle and syringe programs. They’re used successfully in many European prisons without any adverse effects. Keep reading, keep writing in and all the best to you.
Letters from The Bay I have received letters recently from Long Bay regarding routine access to clinic treatments for headaches, doctors appointments, etc. I will investigate the issues you have raised.
Remember if you have any questions write in. I will answer your questions and find answers if I don’t know them. All you need to do is ask! • Robert Barco, Hep Review Hepatitis NSW (see address, page 3).
Inject reality into drug
If we can’t eradicate drugs we have to learn to live with them in a way that causes least harm, writes
rug busts have a hallucinatory effect on headline writers who declare each raid to be the ‘’bust of the decade’’ or even the ‘’century’’. Among police and politicians, drug busts cause memory loss and irrational thinking. The latest raid, they regularly declare, will keep drugs off the street and protect our teenagers from the ravages of hallucinations, memory loss and irrational thinking. However impressive the police work behind the latest bust in which 31 people were arrested and $9 mill of drugs seized this week, it is unlikely to halt the steady rise in drug use. How many times over the past 20 years have we seen a stern-faced police commissioner standing beside a table loaded with drugs declaring the haul to be the biggest yet, and seen no subsequent change in the availability of drugs on the street?
Image by Cheri Lucas, via http://writingthroughthefog.com
Despite the millions of hours and dollars spent on drug busts over decades, illegal drugs remain widely available, cheap and potent.
The NSW Bureau of Crime Statistics and Research this week released data showing arrests for possession of cannabis, cocaine, amphetamines and other drugs have risen from 33-45% over the past two years, and arrests for possession of cocaine in the Sydney local government area have risen more than 50%. The bureau’s director, Don Weatherburn, attributes the rising arrest rates not to greater police work but to increased use of the drugs. Nationally drug users and those who work in the area such as doctors and police, reported to the National Drug and Alcohol Research Centre’s monitoring program that in 2010 heroin availability was ‘’very easy’’ or ‘’easy’’; the cannabis market “remained stable” with use common; cocaine use was at its highest to date, mainly in Sydney; ice use remained stable; and use of speed and base had declined. Cast our eyes to the United States and it is clear that three decades of drug wars dedicated to reducing
Adele Horin in the Sydney Morning Herald. the supply have failed as the Mexicans join the Colombians and Afghans in the illicit and seemingly unstoppable trade. Liberals are just as susceptible as conservatives to drug frenzy because the alternatives to raids, arrests and supply-side combat seem too risky. However much they experimented with drugs in their youth, where their own kids are concerned liberals harbour the fanciful notion of a drug-free society. Here the Portuguese have a lot to teach us. In 2001 Portugal decriminalised possession of up to 10 days’ supply of all illicit drugs. Instead of being arrested, people were referred to regional committees with the power to impose warnings, fines or driving restrictions, although in practice they mostly gave no punishment. Simultaneously Portugal increased its investment in treatment and harm-reduction services such as methadone substitution.
The Portuguese model may be too radical for starters so let’s begin with a conversation about decriminalising marijuana, which has been used by one in three Australians aged 14 and over, despite it being illegal to possess, use, grow or sell. And then let’s see if we can’t talk sensibly about allowing committed heroin dependents to get their drug from a pharmacy instead of the black market. There’s no drug for drug frenzy. The only cure is a sober, clear-eyed appraisal of the evidence. • Adele Horin is a Sydney Morning Herald columnist and reporter. This article abridged from http://tinyurl.com/4twjcyv (11 Dec 2010).
The first independent evaluation of the experiment is now in. Conducted by the University of NSW academic Dr Caitlin Hughes and Professor Alex Stevens, of the University of Kent, it shows fears were not borne out. Over nine years the modest rise in drug use by adults has been no bigger than that in other southern European countries. There has been a reduction in drug use in school students, a fall in drug-related deaths and in HIV, a reduced burden on the prison system and an increase in the amount of drugs seized by authorities. The police were able to refocus attention on the upper end of the market. The positive trends were not present in Spain, which was used as a comparison. The aim of a drugs policy should be to reduce deaths, disease, crime, the jail population and waste of taxpayers’ dollars. If we can’t eradicate drugs we have to learn to live with them in a way that causes least harm.
Think before you As many as 6% of hep C cases in the general community and 25% of cases in the prison population could be caused by tattooing, with most risk posed by cheap, sub-standard tattooing equipment, reports Peter Lavelle in his exploration of risky tattooing in NSW.
attooing is “in”. It used to be thought of as only something bikies and Yakuza members did. But now, thanks to hit TV shows such as Miami Ink and LA Ink, it has become much more mainstream. With the rise in popularity of tattooing, health authorities are becoming increasingly concerned about health implications, particularly of socalled ‘backyard’ tattooists. Modern tattooing involves injection of pigments into the dermal layer of skin by puncturing the skin with a needle gun operating 80 to 150 times a second. If properly done by an experienced trained tattooist, there’s little risk of medical complications. However, if the tattooist is poorly trained or isn’t following correct sterilisation procedures, doesn’t clean their equipment or properly use gloves then there’s a risk of skin infections, wounds that don’t heal, and most seriously of all, blood-borne infections such as HIV and heps B and C. Tattoo instruments come into contact with blood and bodily fluids – viral and microbial infections may be transmitted if the instruments are used on more than one person without being sterilised or without proper hygiene techniques. Also, because tattoo dyes are not supplied in singleuse, sterile containers, they might play a carrier role in transmitting infections. Most concerning of all is the risk posed by cheap, sub-standard tattooing equipment bought over the internet. Non-professional or “backyard” tattooing operators have proliferated, in part, because of the availability of equipment bought cheaply online, say people working in the industry. The “backyard” trend is especially prevalent in disadvantaged or marginalised communities and in Aboriginal communities.
Tattoo operators report increasing numbers of young people coming to professional practitioners requiring “fix up jobs” for “backyard” tattoos that were badly done, causing scarring, causing wounds that don’t heal, or bacterial skin infections such as Staphylococcus. There are cases of transmission of hep C that are thought to be attributable to tattooing, because no other cause of transmission such as sharing injecting equipment can apparently be found. However, because the hep C virus is usually detected many years after it is acquired by a person, it is difficult to be sure just how it was acquired. Professor Greg Dore, from the National Centre for HIV Epidemiology and Clinical Research, says the vast majority of cases of hep C are transmitted by sharing drug injecting equipment and this is considered by far the main risk. It is likely that there are many cases of hep C transmission that go undetected. In 2010 a team of researchers from British Columbia, Canada published an overview of medical studies which looked at the risks of acquiring hep C from tattooing. The overview (known as a systematic review and meta-analysis) pooled the results of the 83 research studies which examined the experiences that people with hep C had of tattooing. The researchers found that statistically there was a strong correlation between people with hep C (or hep B or HIV) and tattooing. The researchers couldn’t prove that cases of hep C were caused by tattooing; it may simply be that someone who contracts hep C is more likely to have been living a lifestyle where tattooing is more acceptable. Nevertheless, the association was strong enough for researchers to suggest that as much as 6% of cases of hep C in the general community and 25% of cases in the prison population could be
Image via jacklawrence.org
caused by tattooing. The risk is higher in the prison population because of the reduced likelihood of sterile equipment being available in prison, coupled with the very high prevalence of hep C among prisoners. Interestingly, the study concluded that the likelihood of hepatitis infection increases with the increase in the surface area covered by a tattoo, as well as the number of tattoos received by an individual. The more often someone is tattooed, the higher the risk. Despite the lack of a clear link, there have been documented new cases of inmates developing hep C in prison following tattooing, which strongly suggest that tattooing was the cause. So what can we do about it? Certainly anyone contemplating getting a tattoo needs to be aware of the risk, say health workers.
Some are concerned that the regulations governing tattooing may not be sufficient and may need to be tightened. In New South Wales, regulations governing the tattooing industry falls under Public Health (Skin Penetration) Regulations 2000 which sets out basic minimum requirements for procedures for body art practitioners. It covers cleanliness, sterilisation, use of gloves, disposal of waste and of sharps. In addition there are â€œbest practiceâ€? guidelines that cover record keeping information, after-care requirements, as well as training and first aid knowledge for tattoo operators. There is also legislation under the Children (Care and Protection) Act 1998 which makes it illegal for operators to tattoo people under 18 years of age,
feature without parental or guardian approval (this must be in writing and it must specify the nature of the tattoo and where on the body it is to be done). Tattoo operators are required to be registered with local councils and subject to council inspections every six months to make sure they are complying with the legislation. But are these sufficient? A body jointly set up by NSW Health’s Sydney West Area Health Service, Hepatitis NSW and the Professional Tattooist Association of Australia called the “Skin Penetration Working Group” recently carried out an online survey among NSW tattoo operators. It revealed that 63% of respondents had not received any accredited training in infection control, 53% did not rate their own knowledge of transmission of blood-borne infections highly, 26% were unfamiliar with standard precautions, and 25% of premises had not been inspected by local Councils in the previous 12 months. The NSW Health Department was contacted for this story but did not comment as to whether the existing regulations were adequate to prevent the spread of hep C and other blood-borne viruses. Angela Llewellyn-Sare is a specialist nurse and author of the book Puncture Kit, a safety and information guide to tattooing and body piercing. She believes that licensed tattoo operators are generally good at adhering to legislation.
Images, via google.com/images
“On the whole they’re better than many businesses that do body piercing, such as hairdressers,” she says. But there are individual licensed operators who do flaunt the regulations, says Mr Brenton (Moonie) Eldrige, NSW spokesperson for the Professional Tattooist Association of Australia. He argues that the regulations are adequate, however, their enforcement is very poor. He also argues it’s not the licensed tattooists who are the problem, but the so-called ‘backyard’ operators. “Only those tattooists registered with councils are subject to council inspections. But there are hundreds of ‘backyard’ operators who are not on the local councils register and operate without hindrance,” he says.
promotion The backyard operators are effectively operating outside the law. There is no interest from NSW Health or the police in preventing them or prosecuting them, he added. They use equipment bought over the internet, most of which is inferior, often Chinesemanufactured, which doesn’t comply with Australian standards and regulations that legitimate tattooing equipment should, he says.
sterilising the equipment. The practice is especially common during schoolies week as an alcohol-fueled “rite of passage”. She believes the buying of tattooing equipment over the internet should be banned and advises anyone having a tattoo to “think before you ink”. “If you’re thinking of getting a tattoo, get it from a licensed operator working out of a tattoo shop,” she says.
“Some of the inks they use aren’t even intended to be injected into human skin,” he says. “They tattoo minors without parental permission, and willingly tattoo people who are obviously under the influence of alcohol or drugs, which licensed operators refuse to do.”
“Go inside and check out the premises and see whether it’s clean, whether the operator is using gloves, and all the equipment is single use or sterilised. Ask about the qualifications of the operator and ask about their infection control procedures.”
“A lot are using social networking web sites to advertise,” he says.
Never get a tattoo from a backyard or unlicensed tattooist, or in prison.
He argues local councils should be more proactive and should have the ability to police and prosecute non-licensed operators.
For more information about safer tattooing, contact the Hepatitis Helpline. Free copies of safer tattooing and piercing brochures are available.
Over the last few years the ready availability of equipment on the internet has given rise to “tattoo parties”, according to Angela Llewellyn-Sare. These are parties in which young people tattoo themselves with cheap equipment, without
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. Our solicitors understand the needs of people living with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at firstname.lastname@example.org or telephone us on 02 9206 2060.
• Peter Lavelle is a freelance health writer who regularly contributes to Hep Review magazine. email@example.com Puncture Kit: www.puncturekit.com.au/
Information update sessions for members As a new membership benefit, we offer free Information Update sessions to our members twice a year. Come along for a refresher, an update or to revisit the basics. Non-members are welcome to sign up for membership on the night, choosing whichever payment option suits their income (including our zero-fee option). Details of the next Information Update: Tuesday 12 April (6:00-7:30 pm) Hepatitis NSW office, 349 Crown St, Surry Hills
• Please RSVP by calling Toby on 1800 803 990 or emailing firstname.lastname@example.org
Chris’ story: dealing with the after-
read John’s story with interest in last December’s Hep Review. I have also suffered with post-interferon treatment problems.
I was diagnosed with Chronic Fatigue Syndrome induced by interferon treatment. For the last five years I had been trying to eliminate what had been causing fatigue and lethargy. I was finding that after finishing work, I’d get home and collapse in the lounge chair with little energy to do much more. Prior to this time I was very active. My first experience of treatment, which was unsuccessful, was in 1993. I decided to have a second round of interferon treatment, which started in November 2008. Treatment this time cleared the virus. During treatment I spent a majority of time in bed and had to resign from my job. After treatment I found that the specialist, for whatever reason, appeared to not want to handle complications, or advise on diagnosis or treatment of problems. Having a very good GP is essential; this I believed helped me through my process. Trouble is, Chronic Fatigue Syndrome (CFS) is difficult to diagnose because the symptoms vary greatly among individuals (except for the overwhelming fatigue). Consequently, many sufferers may find themselves drifting from one specialist to another in search of answers. Some develop anxiety and depression and end up being treated for a psychiatric disorder rather than a physical illness. Anyway, I attempted to eliminate any confounding issues. I was tested for heart problems, myasthenia gravis (a muscle condition), depression and, finally, with the help of my Diabetic Educator a second opinion was organised with a liver specialist at POW Hospital. From this specialist I got a referral to see Professor Andrew Lloyd. At this point my condition was diagnosed as CFS – this took 15 months to investigate and diagnose. Professor Lloyd is an infectious diseases physician and immunology researcher. He is the Director of the Infection and Inflammation Research Centre (IIRC) at the University of NSW.
Professor Lloyd noted that “physical activities previously achieved with ease have now become associated with a prolonged exacerbation lasting hours or longer. His sleep pattern has become very irregular. Other symptoms include neuro-cognitive difficulties, including inability to concentrate and impaired short term memory”. My anxiety levels had increased, which lead to episodes of short term depression every few weeks. Professor Lloyd also went on to say that “Chris has an interferon-induced persistent fatigue, although there are several confounding issues that may be contributing to his symptoms”. More work was needed to eliminate confounding issues in order to find out what was making me continue to feel so ill. Referral was made to the Fatigue Clinic based at the Lifestyle Clinic attached to the University of NSW; here I was introduced to “the sleep wake cycle” and “sleep hygiene” and “the sleep/wake cycle and management of mood disorder”. This referral was very useful in the understanding of pacing the limited energy I had in one day as not to exert myself. However, I did notice that some of the issues I was feeling from anxiety were complicated and needed outside therapy. My symptoms over the last two years include the following problems that persist at times on a daily basis: Fatigue: New onset unexplained, physical and mental fatigue. Inappropriate loss of physical/ mental stamina. Post-exertional malaise: A pathological slow recovery after both mental and physical function, 24 hours or longer. Sleep dysfunction: Unrefreshing sleep, changed sleep patterns or quantity Pain: Joint or muscle aches or headaches Neurological-cognitive manifestations, two or more should be present: Short-term memory problems, poor concentration, word-finding difficulties, inability to calculate numbers, disorientation, difficulty with processing information, categorising words and word retrieval, perceptual and sensory changes, inability
-effects to comprehend/retain what is read, slurring of speech, vision disturbances (blurring, eye pain), numbness, tingling or burning sensations in the extremities, ringing in the ears, balance problems, muscle weakness, overload phenomena either cognitive, sensory or emotional, e.g. photophobia or hypersensitivity to noise, touch or sound, which can lead to crash and/or anxiety
to Thursday I have been in bed. Friday I also slept from the afternoon onwards. Saturday, I woke early morning and could not get back to sleep, but slept for most of the day. I am finding this extremely tiring to write at midnight on Saturday.
Neuro-endocrine: Changes in body temperature, sweating episodes, cold extremities, marked changes in weight or appetite; symptoms worsen with stress. Immune: Tender lymph nodes, sore throat
The week I described is somewhat typical for what I now experience. I recently signed up for a three hour course once a week, but pulled out after two weeks. I couldn’t get out of bed for the next three weeks, so I missed too much of the 12 week course to continue.
What makes CFS unique is that it is postexertional fatigue unrelieved by rest and lasting at least 24 hours. Post-exertional malaise and/or fatigue of inappropriate severity can temporarily immobilise me and worsen my symptoms following normal physical or mental activity. It takes me an inordinate amount of time to recover – 24 hours or more.
A few years ago I was swimming 2-3 kilometres a week and enjoyed the beach. These activities are a long way from me now. I was also going to make a sprint with my super payments over the next ten years. I have now spent my savings. I estimate my financial loss to date, from this treatment process to be about $200,000. Has my quality of life improved from the hep C cure?
The biggest misconception is that the type of fatigue it results in is similar to the everyday variety most people will experience. Anyone who has ever felt tired may believe they can identify with CFS and may think, “I often feel exhausted and manage to get on with it”. But the fatigue experienced by a person with CFS is entirely different. For example, it can take a CFS sufferer days to recover from a walk around the block.
It is easy to feel like an ‘orphan’ in this process as it is hard to get to people that have the experience to deal with the post treatment problems. This leaves a minefield of potential causes that may exacerbate the problem or make you feel as if it is all in your head.
So if there are medical conditions brought on by interferon treatment, I totally agree with John; we need to be made aware of possible risks associated with treatment. Even if it is only a small percentage, an informed decision needs to be made by us, as the patient. I am 52 years old; I live with my wife and young son. Over the last 12 years, I developed diabetes and sleep apnoea – both well controlled. I am overweight, but find that this is also compounded by constant lethargy and fatigue I now have. I have not worked for over two years; I am now on a disability pension. I am sick and tired of being confined to my bed. This week I have been to the pool twice for a sauna and walking 3-4 laps in the pool. Tuesday
Last week I went to a Job agency; this appears hopeful on my part at best.
I think there is a lack of recognition of the conditions that people may develop after treatment. I believe that I was fortunate to have a good GP and find a specialist like Prof Lloyd that acknowledged the problem, its possible cause and direction. I have been told by some good spirited people, “just go for a walk along the beach” or “I feel a bit like that”. These suggestions play no part in improving my condition. I do not give up hope that I will return to work, but in reality this could be optimistic. •
Chris Lawrence, NSW The overwhelming majority of people who complete hep C combo treatment do not experience such problems. We can offer suggestions that might help those people who have a harder time after treatment. Phone the Hepatitis Helpline for more information. ED
HELLO HEPATITIS HELPLINE “I’m not quite sure how to talk about this. I’ve just started seeing someone and it’s all going really well. I’d like to start sleeping with him, but I’m really worried about passing hep C on to him. Is it possible to give someone hep C through sex?”
sex with partners of the same HIV status). The risk of hep C being passed on between HIV-positive men is higher if the sex involves unprotected anal sex, fisting, group sex, blood, shared sex toys, other STIs or drug use.
This is something that a lot of people are worried about. There’s no need to feel self-conscious: people with hep C want to have sex too!
• using condoms and lube for anal sex
It’s unlikely for hep C to be passed on during sex. That’s not to say that it’s impossible, just that in most circumstances it’s very rare. The only risk is if there’s blood to blood contact during sex or if sexually transmitted infections are present (particularly HIV). In heterosexual, monogamous relationships (the relationships that have been the focus of most research), it’s agreed that the risk is minimal. But just what does minimal risk mean? Well, in a 2004 article from the USA*, 776 heterosexual, monogamous spouses of people with hep C were followed for 10 years. After that time, even though the couples did not use condoms, only three people had contracted the virus. Each of them, though, had a different strain of hep C to their partners (which means that they could not have contracted the virus from them), and so the study concluded that the risk of hep C being passed on in that situation was low or nil. There are several other large scale studies from around that time that had similar results. The situation is a bit different for people with HIV, particularly HIV-positive men who have sex with men. We know that for people with HIV there can be a significant risk of hep C transmission during sex, and that hep C can progress more quickly than in other people. There have been significant numbers of HIVpositive gay men contracting hep C through sex in Australia and elsewhere through a practice called serosorting (choosing to have unprotected
For HIV-positive people, good ways to reduce the risk include: • wearing gloves for fisting • using condoms with sex toys and changing them between partners, or washing toys with hot soapy water and drying them between partners • using sterile equipment if injecting drugs, and disposing of the equipment in a fit bin • remaining aware of blood. With that information, hopefully you’ll be able to weigh up the risks based on what you’re into, sexually. Overall, unless HIV is present, there’s no need to use condoms just because of hep C. Remember though that there are plenty of other good reasons to use condoms and lube! Especially in a new relationship it’s important to be aware of STIs, and to get a sexual health screen and talk about monogamy before stopping condom use. • For more information about sexual health, including strategies for condom use, please call the Sexual Health Info Line on 1800 451 624.
‘Hello Hepatitis Helpline’ is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity. 48 www.hep.org.au
* Carmen Vandelli et.al., Lack of Evidence of Sexual Transmission of Hepatitis C Among Monogamous Couples: Results of a 10-Year Prospective Follow-Up Study. American Journal of Gastroenterology 2004. 100(1): 855-859.
membership matters You are vital to us — we are here for you IN YOUR MARCH EDITION OF MEMBER NEWS, READ ABOUT: • Membership tips:
This is a great time to join or renew, with our membership year now beginning on 1 July. Members may choose to pay for up to three years at once, while zero fee renewals are now only required once every three years (join or renew this year to begin the process). Professional and Organisational members will receive their invoices in May.
• Early bird prizes will be up for grabs, and we have a couple of special offers to help with your healthy New Year’s resolutions. • So why not Kickstart your healthy life: Copies of a free Australian Better Health Initiative: How do you measure up? are available for current members. Further details in Member News.
• Information update sessions for members: As a new membership benefit, we are now pleased to offer free information update sessions to our members every six months.
The sessions will cover hepatitis basics and offer insight into areas of development in the hep C field. Come along for a refresher, an update or to revisit the basics. The next session will be happening at our offices on Tuesday 12 April (6 - 7.30 pm) and will feature information on disclosure. The sessions are open to all members. Non-members are welcome to sign up for membership on the night (choosing whichever payment option suits their income). Please RSVP by calling Toby on 1800 803 990, or email email@example.com Refreshments provided!
A historical perspective – 1996 A keyhole to our work – continued from page 3
Headlines from 15 years ago...
Women were not named specifically as a priority population in the most recent hep C strategy. In part that’s because women make up a large part of those groups named by the strategy – young people, people who are or have been in a custodial setting, Aboriginal people and people who inject drugs. In any case, the Hepatitis Helpline took more calls from women than from men in the twelve month period between July 2009 to June 2010. In comparison with men, women are more likely to demonstrate healthseeking behaviours, and often call on behalf of a partner who has hep C.
• Clint’s Crazy Bargains donates $300,000 for hep C research
It’s clear that women represent a significant group in the work that Hepatitis NSW does in providing education, information, advocacy and support to people affected by hep C. • Bruce Cherry, Hepatitis NSW.
• CES and hep C discrimination • Hep C set to blow out government budgets • AMA delivers urgent warning on hep C • New Federal Health Minister meets with Hepatitis C Councils • NSW Blood Bank ‘Lookback’ program • Premier suggests heroin ‘safe areas’ • Pre-employment medicals – do they break the law? • NSW Health Minister, Andrew Refshauge, launches our new hep C booklet If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy. • Taken from The Hep C Review, Edition 14, April 1996.
hep C bookmarks O
ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
w w w.h
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990). • Hepatitis NSW
TRANSMISS Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
or call the
Hep C Helpline (see over)
Hepatitis C is hard to catch. It is not transmitted by touching someone who has it or drinking out of the same cup or using the same knives and forks. It is transmitted when infected blood from one person gets into the bloodstream of someone else. For more information about hepatitis C visit www.hepatitisc.org.au or call the Hep C Helpline (see over)
9332 1599 1800 803
St, surry hills -
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Address Ch almers St Surry Hills NSW 2010
he p. or g. au â€“ yo ur on e- st op sh op fo r he p in fo Info update sessions
Info update sessions are kicking off Hepatitis N at SW in 2011 ! The groups a re held at ou r office: Leve 349 Crown S l 1, t, Surry Hills, and are open members (no to n-members c an join on th night; zero-fe e e option avail able). Our upcomin g meeting wil l be on Tuesd 12 April, run ay, ning from 6p m-7.30pm. â€˘ For more details, call th e Hepatitis H on 1800 803 elpline 990.
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9 (Sydney) nal) all NSW regio c e re (F 0 9 9 3
research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need. Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. This helps develop consensus opinion on particular research topics and broadens our overall knowledge. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.
Working with the “hierarchy in the underworld”
Insights into providing a better hep C diagnosis
Australia – The existing literature on peer education programs emphasises training in communication skills but provides little direction on the content of this training. This research examines the specific strategies used by people who inject drugs when engaging peers in education to promote safer injecting and the prevention of blood-borne virus transmission.
Australia – Previous research has documented patient experiences of hepatitis C virus (HCV) diagnosis to be without sufficient pretest and post-test discussions – health professionals have expressed a need for training in this area.
People who inject drugs participated in a series of three focus groups to develop peer education messages and strategies which they then trialed in their networks. Participants’ strategies for peer education were profoundly shaped by concerns about not offending or challenging others’ perceived social status. Some participants preferred only to influence others’ injecting practice using non-verbal strategies, such as modelling safer practice. Although peer education may be based on the notion of a shared social status among people who inject drugs, these results demonstrate the heterogeneity of social relations existent within networks of drug injectors. Drug users who are trained as peer educators require a repertoire of communication skills to be used in appropriate circumstances. Treloar C, et.al. Working with the ‘hierarchy in the underworld’: insights for communication skills training with peer educators. Contemporary Drug Problems. Accepted 31 August 2010 • Abridged from correspondence.
This study aimed to examine the diagnosis experiences of 24 people diagnosed with HCV in the preceding two years. Face-to-face interviews of 24 participants (recruited through advertising) were conducted. Overall, the HCV diagnosis experience of participants was poor. Participant narratives of HCV diagnosis were characterised by confusion in relation to tests that were performed and the implications of test results. Post-test discussions were inadequate – there was a reported lack of information, support and referral provided to participants. Most clinicians do not receive specialised training in hepatitis C but may be involved in diagnosis in their careers. The impact of negative diagnosis experiences for patients can be serious and long term. These findings highlight areas of suboptimal diagnosis experience and suggest training and support needs of health professionals. Treloar C, et.al. Providing a better hepatitis C diagnosis: Insights from a qualitative study of recent seroconverters. Australian Family Physician. 2010: 39(8): 589-92. • Abridged from correspondence.
research updates Hep C virus can live for months in liquid
IL10 associated with chronic hep C
Germany – Sandra Ciesek and colleagues looked at the infectivity, environmental stability, and susceptibility to chemical disinfectants of HCV grown in laboratory cell cultures.
Australia – This study investigated early immunological events that might determine outcome in hep C infection, in a longitudinal cohort of natural HCV infection, predominantly people who inject drugs. People were enrolled in the Australian Trial in Acute Hepatitis C – a multicentre, prospective longitudinal cohort.
Until recently, HCV could not be grown in laboratory cultures, so the antiviral activity of disinfectants against HCV was estimated based on studies using the structurally similar bovine viral diarrhea virus, the investigators noted as background. But the recent development of an HCV infection model system has allowed direct assessment. The study authors analysed HCV RNA levels using quantitative real-time polymerase chain reaction (PCR). Genome stability was determined by introducing recovered viral RNA into Huh7.5 cells. HCV infectivity in a liquid environment was detectable for up to five months at lower temperatures. Different alcohols and commercially available antiseptics reduced HCV to undetectable levels. Diluting hand disinfectants reduced their virucidal activity. The researchers noted that the risk of hep C infection may not be accurately gauged by determining HCV RNA levels, since viral infectivity and viral load copy numbers did not directly correlate. The results, they suggested, “should be useful in defining rigorous disinfection protocols to prevent nosocomial (occuring in hospital settings) transmission of HCV”. Ciesek K, et.al. How Stable Is the Hepatitis C Virus (HCV)? Environmental Stability of HCV and Its Susceptibility to Chemical Biocides. Journal of Infectious Diseases 2010. 201(12):1859 • Abridged from hivandhepatitis.com (16 July 2010) http://tinyurl.com/4ct2uzy
This study demonstrated the importance of the magnitude and type of HCV-specific T cell response early in HCV infection in viral clearance and persistence. Clearance was associated with a significantly higher HCVspecific antiviral response. This was demonstrated by a higher production of key antiviral cytokines produced by T cells, which was maintained after viral clearance. In contrast, those with viral persistence had a significantly higher magnitude of the regulatory cytokine IL-10 early in infection. The production of IL-10 in those with viral persistence was in the relative absence of key antiviral cytokines IFN and IL-2. Furthermore, high production of antiviral cytokines IL-2 and IFN was associated with low viral load, whereas high production of IL-10 was correlated with high viral load. This study advances our understanding of the mechanisms behind an effective immune response for clearance of HCV in a unique cohort of predominantly people who inject drugs. It has illustrated the critical role of antiviral IFN and IL-2 T cell responses early in HCV in viral clearance, and the contrasting role of IL-10 in viral persistence. Thus suggesting the ratio of IFN to IL-10 production early in HCV infection could be used as a prognostic indicator for viral clearance and is likely to be of great interest for the development of new therapies for HCV and in enhancing the efficacy of antiviral treatment. Flynn JK, et.al. Early IL-10 predominant responses are associated with progression to chronic hepatitis C virus infection in injecting drug users. Journal of Viral Hepatitis, no. doi: 10.1111/j.1365-2893.2010.01335.x • Abridged from correspondence.
research updates Hep C infection linked to fat enzyme in liver cells
Pharmacists need support for harm reduction
USA – Scientists at the Gladstone Institute of Virology and Immunology (GIVI), University of Southern California, have found that an enzyme associated with the storage of fat in the liver is required for the infectious activity of hep C. This discovery may offer a new strategy for treating the infection.
Australia – A new study shows pharmacy staff do not receive adequate training to give people who inject drugs information about health testing and addiction treatment services.
The study, published in the journal Nature Medicine, shows that the enzyme DGAT1 is a key factor in hep C infection. With several potential DGAT1 inhibitors already in the drugdevelopment pipeline, DGAT1-based treatment for hep C may be possible in the near future. “Our results reveal a potential ‘Achilles heel’ for hep C infection,” stated Dr Melanie Ott, senior author on the study. Fat droplets, which store fat in cells, have become a hot new topic in biology. DGAT1 is one of the enzymes that help to form fat droplets. The Gladstone team, led by Eva Herker, PhD, discovered that HCV infection and viral particle production are severely impaired in liver cells that lack DGAT1 activity. “DGAT enzymes produce the fat that is stored in the droplets that are important for HCV replication, so we wondered if inhibiting those enzymes might disrupt the viral life cycle,” stated Dr. Herker. “We found that HCV specifically relies on one DGAT enzymes, DGAT1. When we inhibit DGAT1 with a drug, the liver still produces fat droplets through another DGAT enzyme but these droplets can’t be used by HCV.” Ott M, Herker E, et al. Efficient hepatitis C virus particle formation requires diacylglycerol acyltransferase-1. Nature Medicine 2010. 16: 1295–1298 • Abridged from emedist (10/10/2010) http:// tinyurl.com/4dgovsc
The research, published in Drug and Alcohol Review, revealed people who exclusively went to pharmacies to obtain injecting equipment were more likely to have never received treatment for their drug use and were less likely to have had recent testing for blood-borne viruses than people who only went to needle and syringe programs (NSPs). The study, carried out in south-east Sydney, also found people who only went to pharmacies and those who used pharmacies and NSPs to get needles were more likely to report receptive syringe-sharing and sharing of ancillary injecting equipment compared with people who exclusively used NSPs. “Exclusive users of pharmacies were more likely to have never received treatment for their drug use and the least likely to have had a recent HCV test, suggesting that they are more disengaged from important health services than other IDU. “These differences may relate to the way that pharmacy staff do not receive the same extensive and ongoing training as NSP staff, which is aimed at increasing clients and customer’s knowledge of harm reduction and ensuring they have appropriate referral to testing and treatment services. “This means that people who exclusively use pharmacies may be less exposed to information about where and how to access testing and/or treatment services...,” they said. The study found people who used pharmacies as their source of equipment did so because they felt they were less likely to be under police surveillance. Bryant J, Topp L, et al. Is point of access to needles and syringes related to needle sharing? Comparing data collected from pharmacies and needle and syringe programs in south-east Sydney. Drug and Alcohol Review 2010. 29(4): 364–370 • Abridged from pharmacynews.com.au (23 July 2010) http://tinyurl.com/45bognd
research updates Growth factor drugs bolster hep C treatment compliance
Telbivudine reduces hep B infection rate
USA – Having cirrhosis, diabetes, or substance use disorder increased the odds of hep C treatment discontinuation, whereas use of growth factor drugs correlated with treatment persistence, reported Dr Lauren Beste.
USA – Researchers studied the treatment of pregnant women for hep B using Telbivudine in their second to third trimesters. The study concluded that the mothers benefited from treatment and no transmission of HBV to newborns was detected at 28 weeks post birth.
The research looked at 11,019 patients with hep C genotype 1 who received at least two prescriptions for pegylated interferon and ribavirin between 2002 and 2007. Patients who completed at least 80% of the standard 48-week treatment regimen were considered to have completed treatment; 5,795 patients. Patients who stopped therapy before 12 weeks were significantly more likely to have cirrhosis, compared with patients who persisted with therapy, and also were more likely to have diabetes and pretreatment substance use disorder. They were also half as likely to use growth factor (e.g. erythropoietin or darbepoetin) as were their counterparts who continued with therapy. The authors also assessed patients who halted treatment between 12 and 24 weeks of therapy. These patients were more likely to have pretreatment depression, were slightly less likely to have other mental illnesses, and – once again – were nearly half as likely to use growth factor as were patients who persisted with the therapy. Dr Beste speculated that growth factor use “leads to improvement in low blood counts, allowing providers to continue treatment when otherwise it would be stopped.” Beste LA, et.al. Predictors of Early Treatment Discontinuation Among Patients With Genotype 1 Hepatitis C and Implications for Viral Eradication. Clinical Gastroenterology and Hepatology 2010. 8(11): 972-978. • Abridged from internalmedicinenews.com (3 Nov 2010) http://tinyurl.com/47qla6m In Australia, erythropoietin (also know as epo) is sometimes used to address treatment related anaemia and neutropenia. We are planning to run an article that discusses epo in our next edition. ED
The study co-investigator Dr Calvin Pan, anticipates a “very powerful impact in the field, as hep B is difficult to eradicate and currently there is no treatment modality that can cure the disease. Blocking the vertical transmission from mother to infant will eventually decrease the disease burden in the future generations with the hope to eradicate HBV from the earth.” Current vaccines and HBIG given to a newborn do not work well when the mother has a high viral load and is HBeAg positive. According to Dr Pan, “Transmission rate to the newborn in this population is about 15-30%, resulting in a newborn with lifelong HBV infection 90% of the time.” Dr Pan acknowledged the limitations of this study: “The infant follow up is limited to 28 weeks after birth. Even though it is good enough to define the failure rate of transmission prevention, the long term safety data for the infant is missing. More studies are needed in the field to provide a comprehensive strategy to prevent HBV vertical transmission.” The message he wants to convey is still a positive one and shows a different way of attacking the problem of HBV. “Because we are struggling in combating the pandemic of hep B worldwide, and frustrated in the limited resources we can allocate for treating our patients,” said Dr Pan, “Maybe we should be putting more efforts and allocating more resources on preventing HBV vertical transmission.” A Prospective and Open-Label Study for the Efficacy and Safety of Telbivudine(Ltd) in Pregnancy for the Prevention of Perinatal Transmission of Hepatitis B Virus (HBV) to the Infants, AASLD 2010 • Abridged from aasld.org (2 Nov 2010) http:// tinyurl.com/48tgqm7
research updates Diabetes and hep C in Pakistan
Gene associated with hep C treatment depression
Pakistan – This study was carried out to determine the prevalence of hep C infection in diabetic patients and to elucidate the presence of any possible relationship between hep C and T2DM (type-two diabetes mellitus).
USA - Researchers have identified a genetic marker which increases the risk for major depression in people with hep C undergoing treatment.
Serologic testing for anti-HCV antibody was done on a sample of 3,000 individuals with T2DM visiting Diabetes Clinic of Nishtar Medical College Hospital, Multan, Pakistan, and 10,000 volunteer blood donors visiting blood bank of the same hospital during the study period. Data about various variables was collected from diabetic patients using a structured questionnaire after taking informed consent. A prevalence rate of 13.7% for hep C infection was recorded among subjects having T2DM compared to a rate of 4.9% among the control group of volunteer blood donors without diabetes. The patients with T2DM were more likely to have hep C infection as compared to the control group. Diabetic patients with age above 55 years had higher prevalence rate as compared to younger individuals. Male patients had significantly high seropositivity as compared to female patients (15.3% vs. 12.4%). Those with duration of diabetes 11 years and above and the ones with good glycemic control had higher seroprevalence rates of 18.2% and 18.7% respectively. There was no statistically significant difference among subjects when the distribution of hep C was studied on the basis of marital status, locality, or family history of diabetes. The results show that there is a strong association between HCV and T2DM in the region as evident from significantly higher prevalence of hep C infection in diabetics as compared to the control group in the present study. Jadoon NA, et.al. Seroprevalence of hepatitis C in type 2 diabetes: evidence for a positive association. Virology Journal 2010, 7:304. • Abridged from 7thspace.com (5 Nov 2010) http://tinyurl.com/4txb9ya
The study involved 170 treatment-naive people who were geno-analysed and treated with pegylated interferon and ribavirin. The results indicate that those carrying the marker had a greater risk of developing major depression, but also had an increased likelihood of viral clearance. The need to identify patients at risk of depression is pressing, according to the study’s lead author, Dr Muhamad Aly Rifai, from the Lehigh Valley Health Network in Bethlehem, Pennsylvania. “The identification of patients with the IFNAR1 polymorphism (marker) may be useful in helping us determine who is at a greater risk of depression and tailor preventive treatment strategies to prevent discontinuation or adverse effects during their treatment,” Dr Rifai told attendees at the American College of Gastroenterology 2010 Annual Scientific Meeting. In addition to genotyping, patients were assessed using the Center for Epidemiological Studies Depression Scale. As is consistent with previous research, the results indicated that 28% of patients receiving the antiviral treatment developed major depression (47 of 170). The risk of depression among hep C patients on antiviral medications represents a substantial concern for doctors, and the findings could represent valuable information to help address that concern, said session moderator Dr Paul Pockros, head of the Division of Gastroenterology/Hepatology and director of the Liver Research Consortium at The Scripps Clinic, California. American College of Gastroenterology (ACG) 2010 Annual Scientific Meeting and Postgraduate Course: Abstract 32. Presented October 19, 2010. • Abridged from medscape.com (3 Nov 2010) http://tinyurl.com/495yjqw
interferon-based treatment Interferon-based treatment
partner). Female partners of men undergoing treatment must not be pregnant.
Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily.
Age: People must be aged 18 years or older.
Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly anti-HCV positive and HCV RNA positive). Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each
Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information). Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests must be performed at the same laboratory using the same
type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment. Note that some people with genotype 2 or 3 may still require biopsy to determine whether
CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peg interferon mono-therapy if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
complementary medicine they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring. See “Monitoring Points”, page 58. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access interferonbased therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline (see page 60). NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre. In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).
Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see ED24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see ED45, page 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side effects? • Are they a member of a recognised natural therapy organisation?
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 60) for more information and the contact details of relevant professional associations. • Hepatitis NSW.
• How have the outcomes of the therapy been measured?
To access any of the above mentioned articles, please phone the Hepatitis Helpline.
support and information services Hepatitis Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers). Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.
Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes some information resources in various languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au
Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW).
support and information services 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 Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning 10.30–11 am, (Eastern Standard Time). Go to 3CR’s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390. Gosford: 6pm-7.30pm on the last Thursday of each month at the Education Centre, Gosford Hospital Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast hep C support group A peer support group for people living with or receiving treatment for hep C. Meets every 3rd Monday, 5-7pm at the Coffs Harbour Community Centre. For info, phone Janet Urquhart, Social Worker, Coffs Harbour Health Campus on 6656 7846. Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working 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.
refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466.
Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0418 207 939. Sydney Hep C Drop In Evenings Each evening will feature a guest speaker and they will start at 6pm sharp, finishing at 7:30pm. The guest speaker will present from 6-7. The last half hour will be a time for people to chat to one another, have a cup of tea or coffee and ask any questions they have of the speaker. Drop In Evenings are held at Hepatitis NSW (349 Crown St, Surry Hills), and anyone affected by hep C is still welcome to attend. Tuesday 5 April, 2011, 6:00 – 7:30, Alcohol and Other Drugs. Tuesday 28 June, 2011, 6:00 – 7:30, Legal Issues for People With Hep C. Tuesday 30 August, 2011, 6:00 – 7:30, Complementary Therapies. Tuesday 25 October, 2011, 6:00 – 7:30, New Developments. For info, phone the Hepatitis Helpline on 9332 1599. Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C. Operated by the NSW Multicultural HIV/ AIDS and Hepatitis C Service, Traids offers free and confidential services to affected people and their families and carers. For info, phone the Traids worker on 9515 5030 or 1800 108 098.
Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light Hep Review
noticeboard / 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.
Conferences: The 2011 Haemophilia Conference will be held on 20-22 Oct 2011 at Olympic Park, Sydney: http://tinyurl.com/24n9oy4
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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for Hep Review and Transmission Magazine. • proofreading for Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker. Want to find out more? Please phone the Hepatitis Helpline for more information (see page 3).
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 firstname.lastname@example.org or phone Ronnie Turner, Program Manager, 02 8204 0722.