Hep Review ED73 by HepatitisNSW

Hep Review Winter

June 2011

Edition 73

Free c opy Pleas e take

Liver risks for unfit teens United States FDA approves telaprevir and boceprevir Hepatitis Awareness Week 2011 Hep C treatment: EPO or no EPO? Overseas update from Professor Greg Dore Hep Review Edition 73 June 2011 1 New therapies increase and improve treatment choices

editor’s intro

ello readers and welcome to another edition of Hep Review.

Inside, you’ll notice a bit of buzz about the new triple treatments; options that, we hope, will soon to become available here in Australia. Both of our commissioned articles focus on treatment. We want everyone with hep C to know enough about the treatments so that, when they’re available, people can make better informed decisions. As I mentioned in the previous edition, we need to spread the word and I’m happy to say that close to 50 chemists across Sydney have taken up our offer and are currently helping distribute 2,500 free copies of this magazine. Other initiatives that promote better awareness of viral hepatitis have recently taken place. Inside, see our news on the NSW Aboriginal hep C media campaign and NSW Health’s Share a needle, share hepatitis C campaign targeting young people. We also carry promotions for the NSW Health Get Healthy NSW project (see Weblink below). Get involved and you will be partered up with a phone-based life coach who for six-months will be there for you – helping you achieve your health goals. A great initiative, especially for people with liver illness!

a keyhole to our work Men and hep C Statistically, there are more men than women with hep C. This may be due to greater levels of injecting drug use among men – another factor may be that men do not seem to fight off initial infection as well as women and have a greater chance of chronic infection. We also know that men don’t seem to respond to combination treatment as well as women, and they also seem to experience slightly more long term liver damage. Impotence is a common symptom in men with advanced cirrhosis. Men with cirrhosis are also at five times the risk of developing liver cancer than are women who have cirrhosis. This information is taken from our booklet, What You Need To Know: a guide to hepatitis C, from a subsection, “Men and hep C”. Does any of our work specifically target men?

In a nutshell, aside from a Men’s Hep C Health Promotion workshop (2010) and resulting Men’s Liver Health media campaign (late 2010), we don’t specifically target men – or women – in our service delivery work. Generally, this makes sense as none of our service delivery work excludes people on a gender basis.

Weblink of the month

The Get Healthy Information and Coaching Service is a free, confidential telephone-based service funded by NSW Health. It aims to help you with healthy eating, being physically active and achieving a healthy weight; all important things if you have viral hepatitis. Check it out at www.gethealthynsw.com.au

Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.

2 www.hep.org.au

Cover image by Giampaolo Squarcina, via Flickr.com

acknowledgements That said, we realise that we probably need to promote – and possibly redesign – some services in order to attract male clients so that service use statistics match the overall demographics of people affected by hep C.

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Chris Norris Lia Purnomo Scott West

2010 men’s health promotion workshop and men’s liver health adverts

Our workshop took place in 2010 and was organised in response to research findings showing that men with hep C suffer disproportionately greater levels of hep C morbidity and mortality than women with hep C (Amin, et al. The Lancet 2006). Hepatitis NSW project workers attended the workshop, and we also invited project workers from peer organisations (NSW Users & AIDS Association, Multicultural HIV/AIDS & Hepatitis Service, Aboriginal Health & Medical Research Council). It was a great opportunity to look at gender differences in people’s access to healthcare services, and whether any of these gender differences impacted on our service delivery. Outcomes from the workshop are downloadable from ... http://www.hep.org.au/documents/2010 MensLiverHealthPoster-2MB.pdf Our Men’s Liver Health media campaign was an outcome from the workshop and ran from September to November, 2010. It specifically targeted men and aimed to increase awareness of liver health risks, including hep C.

Hep Review advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, 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: Samantha Edmonds Sarah Fleet Claire Lavers Gerard Newham Adrian Rigg Cindy Tucker Dog on the moon comic: Andrew Marlton Contact Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au text/mobile 0404 440 103 post Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney

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.

Hep Review

Edition 73

June 2011

contents Letters Relevant information Interesting reflections

5 5

News Parole appeal for ailing Chinese dissident Discrimination still rampant in China Avalanche of hep C products on the way Early hep C drug pricing questions Controversial drug launched in Vietnam UK chemist hep testing launched Okyeame’s 5,000 hep B tests Livin’ for racin’ Hep C in Poland Hepatitis outbreak attorney “Lawyer of the Year” Damages reduced but validated US hep C burden grows Hep C costs big: Ontario study Home tattoo kits putting teenagers at risk US genetic testing rolling out Vertex recommends wider screening Chinese fatty liver disease rife US FDA approves telaprevir and boceprevir Keeping up pressure on hep A Hep B potatoes developed Smokers – we want your organs NSW Aboriginal hep C media campaign Share a needle, share hepatitis C Hep E warning at Canberra restaurant Student focus on hep C Hep trial breaks new ground

5 6 6 7 7 8 8 9 9 10 10 11 11 12 12 13 13 13 14 14 15 15 16 16 17 17

Features New drugs herald dawn of better hep C treatments Baruch Blumberg dies at 85 EASL update from Professor Greg Dore Don’t bleed on me Hepatitis Awareness Week 2011 Liver risks for unfit teens FIRE and Mongolian hepatitis Preventing hep C transmission in Australian correctional settings Former health minister to assess needle program in jail Homeless and alone on our streets Hep C treatment: EPO or no EPO?

18 24 24 25 26 27 30 34 35 36 42

My story Meera’s story: That summer dress 22 Meg’s story: Surviving stigma 28 Dave’s story: Lucky so far 40 4 www.hep.org.au Glen’s story: Dealing with deniers 46

Promotions Twitter 6 Resource of the month – I Have Hep C 7 St Vincent’s viral hepatitis trials 8 RAMPT acute hep C study 9 St George Hospital liver clinic 10 ATAHC II research study 13 HALC legal centre 15 thINK about it 26 CHI study 27 Do you want to get healthy? 48 Bathurst’s new hepatitis clinic 48 Hep C bookmarks 50 Our website 51 Transmission Magazine 51 Info update sessions 51 HepConnect peer support service 51 The most precious gift 62 ASHM workforce development program 62 Research updates Hep treatment lowers insulin resistance 52 Liver disease deaths higher among diabetics 52 Unusually high cure rate with new vaccine 53 Vaccine to prevent liver transplant re-infection 53 New vaccine shows promise against hep C 53 Factors that shape assisted injecting practices 54 Does anyone know where to get fits around here? 54 NSP as a safe haven in an unsafe world 55 Human rights for people who inject drugs 55 Spotting gene variants may pinpoint anaemia problems 56 Irish team identifies hep C risk factor genes 56 Coffee boosts hep C treatment response 56 Menopause and obesity linked to treatment relapse 57 More thought needed to support hep C treatment 57 Regular features A keyhole – Men and hep C 2 Q&A – Waiting for new treatment or declining 17 The little book of hep C facts 25 Harm reduction poster – Vein care (part 3) 32 All you need to do is ask – Prisons Helpline 38 Hello Hepatitis Helpline – spontaneous clearance 45 Membership matters 49 A historical perspective (from October 1996) 49 Interferon-based treatment 58 Complementary medicine 59 Support and information services 60 The most precious gift (organ donation) 62 Do you want to help us? 62 Upcoming events 62 Complaints 62 Membership form / renewal / tax invoice 63

letters

news

Image courtesy of Google Images

Relevant information Thank you for the knowledge I gain through your incredibly relevant magazine. During prison induction today at Grafton after correcting and updating our D&A worker’s antiquated information on hep C treatment, he asked how I knew such current facts. To his surprise, I walked him five metres to a copy of Hep Review. Apparently he had seen it and wondered what it was about but hadn’t read it! What he teaches new inmates each day had just been superseded in an instant. His and probably most other NSW Prisons’ staff/prisoner hep C syllabus are antiquated, if not dangerously misleading. So please keep up the top work, especially where most needed – in prisons where syringes & tattoo gear is always shared & rarely cleaned properly. Nothing is changing, but through your magazine, some are becoming more conscious about it all. Michael, NSW

Parole appeal for ailing Chinese dissident China – The wife of prominent Chinese dissident Hu Jia appealed Monday for his parole from prison on medical grounds, saying he had collapsed during a recent prison visit. Zeng Jinyan urged the authorities to grant him parole for hep B treatment, including possible surgery, and to give her copies of Hu’s medical reports, according to posts on her blog. Zeng said she had launched an earlier appeal in April, saying Hu’s long-term cirrhosis of the liver had worsened and required urgent treatment outside prison.

Interesting reflections I think it is worth noting that the issues about post-treatment illness raised in your personal stories by Chris (ED72) and John (ED71) are reflected in the report Recovery from Hepatitis C Treatments, by Dr Max Hopwood, published by the National Centre in HIV Social Research. In his report, Dr Hopwood makes three key recommendations: survivorship programs, posttreatment health and wellbeing surveys, and better pre-treatment informed consent protocols. Name withheld, NSW N.B. to access Dr Hopwood’s report, go to http://tinyurl.com/3fpz6nw

Hu, 37, was sentenced to three and a half years in prison in March 2008 for “inciting subversion of state power”. Hu was presented in absentia with the European Parliament’s Sakharov Prize for Freedom of Thought in December 2008. His activism began in the late 1990s when the economics graduate volunteered to work on environmental projects. Hu’s advocacy for the rights of people living with HIV in China brought him international attention and several awards. It also brought police surveillance, and he spent most of the two years before his imprisonment under virtual house arrest or other forms of detention. • Abridged from sify.com (17 Jan 2011) http:// tinyurl.com/3nfo89w

Hep Review

Edition 73

June 2011

news Discrimination still rampant in China China – A report by an anti-discrimination organisation reveals that more than 60% of Stateowned enterprises still require that job applicants should be tested for hep B. This goes against a government stipulation which specifies that hospitals should never include a hep B test in medical checkups for job recruitment purposes. This stipulation is meant to prevent people with hep B from being discriminated against when applying for a job. One of the stipulations specifies that a working unit will be fined A$145 if it coerces job applicants into taking a hep B test. State-owned enterprises flout the stipulation. They don’t care about the fines, which prove too low and weak as a punishment. And they know that most applicants who have been discriminated against will choose to swallow the result instead of filing a lawsuit against them. So, besides harsher penalties against hospitals and enterprises that fail to abide by the stipulations, much still needs to be done to educate people about hep B. • Abridged from chinadaily.com (18 Feb 2011) http://tinyurl.com/3gtwyan

Avalanche of hep C products on the way USA – A wave of new hep C treatment products is emerging, with more than 30 companies developing scores of novel antiviral medications. At the European Association for the Study of the Liver (EASL) annual congress in Berlin, which ended yesterday (April 3), Mark Thursz of Imperial College, London and vice-secretary of EASL reviewed what to look out for. The two front runners are both protease inhibitors – Victrelis (boceprevir) from Merck & Co, and Incivek (telaprevir) from Vertex, Tibotec and Mitsubishi Tanabe Pharma. Launches of both drugs are expected this year. Snapping at their heels are more recent protease inhibitors such as Boehringer Ingelheim’s BI 201335 – an oral oncedaily offering which has just moved into Phase III and been fast-tracked by the US Food and Drug Administration. Overall, he said that results with the new protease inhibitors were “remarkable”, offering unprecedented levels of sustained virological response; however, the drugs still need to be given against a “back-bone” of pegylated interferon-alfa plus ribavirin. For him, the “light at the end of the tunnel” would be an interferonfree regimen, such as combination therapy with a protease inhibitor plus an NS5b-polymerase or NS5a inhibitor. • Abridged from pharmatimes.com (4 April 2011) http://tinyurl.com/3eohwny

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) including a link to each news item as they are put up daily on our website. From there, you’ll get the link to the original news source. 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.

6 www.hep.org.au

news Early hep C drug pricing questions

promotions Controversial drug launched in Vietnam

Europe – New hep C treatments from Merck and Johnson & Johnson are selling in France for A$29,000 and up, and their price tags may end up limiting access to the high-tech drugs, especially in particularly price-sensitive markets, experts say.

SE Asia – Vietnam started selling Pegnano amid protests from a Swiss firm that the act violates intellectual rights.

The treatments are currently available in France under a program for seriously ill patients. J&J and Vertex Pharmaceuticals’ telaprevir runs A$29,700, while Merck’s boceprevir costs A$41,000, according to Bloomberg. “It’s not a good indication of price elsewhere,” Patrick Bergstedt, of Merck, says in an interview. But medical specialists aren’t so sure, Bloomberg notes. The University of Palermo’s Antonio Craxi worries the French precedent will end up tripling the cost of hep C treatment for some patients, and that the UK, Russia and Eastern Europe will either delay use of the new medications or restrict patient access. Both drugs are under review at European Medicines Agency and the FDA. • Abridged from fiercepharma.com (5 April 2011) http://tinyurl.com/3d2c2wz

Pegnano, produced by Ho Chi Minh City-based Nanogen Biopharmaceutical Company, has been put on sale at the Cam Ha Drugstore in the city’s District-Five. Controversies arise as Pegnano is sourced from peginterferon alfa 2a, a compound that Switzerland’s La Roche AG says is protected by patent. Nanogen’s director Ho Nhan maintains his company never violates intellectual laws. According to the Vietnamese Intellectual Property Law, the government can ban or limit the exercise of intellectual rights in cases where such rights harm national defence, welfare of the people or badly affect other crucial national interests. Meanwhile, there is massive support for Pegnano as it is more than two-times cheaper than Roche’s brand name Pegasys. • Abridged from presscenter.org (31 Dec 2010) http://tinyurl.com/3t8lxyk

Featured resource of the month I have Hepatitis C: What could happen to me? This booklet is a decision-making aid and provides a rough guide to long term hepatitis C health outcome. The booklet aims to help people make better informed decisions about their health. These decisions may relate to lifestyle changes such as alcohol, diet and exercise, or may involve clinical issues such as whether or when to seek treatment. For single copies of the booklet, please phone the Hepatitis Helpline: 1800 803 990 For bulk supplies, please use our faxback resources order form ... http://tinyurl.com/2gx6hrc

Hep Review

Edition 73

June 2011

news UK chemist hep testing launched UK – Pharmacies in northern England are offering blood tests for heps B and C. The test, a finger prick, dry blood spot test, is open to anyone at participating venues in Barrow and Ulverston. The blood samples are then sent away to a lab for testing. At-risk patients will also be offered special counselling before and after the test as part of the new pilot scheme, being run in conjunction with the Hepatitis C Trust. Andrea Loudon, of NHS Cumbria, said: “This is the first time that testing for both hep C and hep B has been offered in pharmacies out in the community. “Because people who are at serious risk of having hepatitis are often drug users or ex-drug users, they may already be in regular contact with their local pharmacist for methadone pick up or needle exchange.” “By offering this testing in the same location it’s another way that we can help these vulnerable people. If this pilot proves successful we will aim to roll out to more pharmacies.” • Abridged from nwemail.co (1 Feb 2011) http://tinyurl.com/3eu2bmw

Okyeame’s 5,000 hep B tests Africa – Ghanaian rapper, Okyeame Kwame is close to achieving his aim of providing free hep B screening to 5,000 Ghanaians. The disease is partially contagious and transfer of body fluids of an infected person will transfer the disease very easily. In light of this the hip hop star started the hep B screening exercise through his OK in Your Zone tour and has held free screening and concerts in Accra, Kumasi, Takoradi and Sunyani. Okyeame Kwame said that at every venue, he provides free screening for at least 500 people followed by the Ghana jam, a concert that features other Ghanaian artists with the sole aim of creating awareness of hep B. “The aim of the tour is to raise awareness and sensitise Ghanaians about hep B and how dangerous the disease is,” he said. The rap doctor said his aim is to screen about 5,000 people and he is on course to achieve that goal. “Our idea was to screen about 5,000 people. I will say we have screened about 3,000 people,” he disclosed. • Abridged from myjoyonline.com (13 Dec 2010) http://tinyurl.com/3gatt7k

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

8 www.hep.org.au

Image courtesy of Google Images

St Vincent’s viral hepatitis trials

Livin’ for racin’ USA – Just talking to a family friend changed the meaning of racing for the Dale family forever. Donnie Dale has been racing for years and got the idea to give up his advertising on his car for the Get Tested Hepatitis C cause. Their love for racing and giving back to the community is how they have ended up with a reality show. They only have a pilot episode right now but they are hoping for people to see the show and step up to help. The biggest thing the family wants people to understand about hep C is that you can’t get it from just touching someone. They are hoping the show will cause people to call their doctors or talk to their friends about getting tested. Everyone in the Dale family has been tested and no one has hep C. “I’m also excited because I know we are going to impact people lives there will be someone that gets tested from watching it and there will probably be more people than just one,” says Susan Dale, Donnie’s sister. • Abridged from ktul.com (6 Jan 2011) http:// tinyurl.com/44f8bdr

news Hep C in Poland Poland – Over 700,000 Poles have hep C but only around 50,000 cases have been diagnosed and treated, say health experts. The number of patients diagnosed and treated in Poland is very small, informs the Bydgoszcz Clinic of Infectious Diseases, which has launched a campaign to raise awareness of hep C. In Poland, 80% of people with hep C have been infected in hospitals through blood transfusions or blood products after medical instruments had been reused without appropriate sterilisation. The virus can also be transmitted due to lack of hygiene in beauty parlours or hair dressers, say health experts. Contrary to the other forms of hepatitis (A and B), no vaccine has yet been found for hep C. According to WHO statistics, some 3% of the world population is infected with hep C and the number is growing each year. • Abridged from thenews.pl (26 Jan 2011) http://tinyurl.com/3d5rwao

Check out the pilot at http://tinyurl. com/3dkpbuc

Have you recently contracted hepatitis C? Would you like to help with hep C research? Studies for patients with hepatitis C The Kirby Institute (formerly The National Centre in HIV Epidemiology and Clinical Research) is running an acute hep C study. The RAMPT-C study aims to explore reasons for transmission of hep C in men having sex with men. If you have been recently diagnosed with hep C (in the last 6 months) and believe that you might have contracted it within the last year or two, and you would like to know more about the study, please contact the study coordinator at St Vincent’s Hospital, Sydney: Rebecca Hickey on (02) 8382 3825 or rhickey@stvincents.com.au *The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee. HREC Ref: HREC/09/SVH/51

Hep Review

Edition 73

June 2011

news Hepatitis outbreak attorney “Lawyer of the Year” USA – Robert Eglet, the attorney who won a record $505 million verdict in the first trial related to a 2008 hep C outbreak in Las Vegas, has been named a “Lawyer of the Year” by Lawyers USA. Eglet, the senior partner at the Mainor Eglet law firm, represented Henry Chanin, the headmaster at The Meadows school who contracted hepatitis after a colonoscopy at one of three now-defunct clinics operated by Dr Dipak Desai. The lawsuit trial and subsequent verdict made national news when a jury found two pharmaceutical companies liable. In its citation, Lawyers USA described how Eglet “argued to jurors that oversized vials of drugs sold by a pharmaceutical manufacturer and distributor were ‘weapons of mass infection’ that led to a hep C outbreak.” In that trial, the citation notes Eglet convinced jurors that Israel-based Teva Pharmaceuticals and Baxter Healthcare “knew the large vials created a risk that doctors would reuse them in shorter surgical procedures that required smaller doses, thus spreading infections between patients.”

Damages reduced but validated USA – The estate of Edward Roe, a man who died in prison from liver disease, can keep a A$38,000 judgment, a court has ruled. Reduced from over A$1.89 million, it is the only award remaining from a multi-million jury verdict to four men with hep C who claimed that the Illinois Corrections Department failed to properly treat them, which amounted to cruel and unusual punishment. The suit, brought by four inmates, claimed that the department’s former medical director, Dr Willard Elyea, had established a policy that deliberately ignored prisoners’ health care needs. Elyea’s guidelines required that all candidates for antiviral therapy have at least two years remaining on their sentence after the diagnosis. The doctor claimed that policy was created to ensure that inmates did not receive an incomplete course of therapy. Though tests repeatedly indicated highly elevated liver enzymes, and Roe showed visible signs of illness, prison medical officials denied treatment, citing the guidelines. • Abridged from courthousenews.com (31 Jan 2011) http://tinyurl.com/425jawa

• Abridged from lvrj.com (6 Jan 2011) http:// tinyurl.com/3f8mag8

The Multi Disciplinary Liver Clinic at St George Hospital supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to Clinical Trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials. For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 lisa.dowdell@sesiahs. health.nsw.gov.au

10 www.hep.org.au

Image via Google Images

St George Hospital Liver Clinic

US hep C burden grows USA – The burden of liver disease has risen dramatically during the past decade among patients with hep C, Dr Fasiha Kanwal and her colleagues reported in the April issue of Gastroenterology. In a large retrospective cohort study of more than 300,000 patients at Department of Veterans Affairs medical centres across the country between 1996 and 2006, the prevalence of cirrhosis and hepatic decompensation doubled and that of liver cancer increased 19-fold. “Thus, 20% of patients with hep C had cirrhosis and 1% had hepatocellular carcinoma in the 2006 calendar year,” said Dr Kanwal of the John Cochran division of the St. Louis VA Medical Center. This increase was significantly greater than that predicted by several mathematical models, she noted. “Measuring the burden of hep C is important ... to understand changes in the pattern of care delivery, provide a critical insight into the magnitude of the problem, and guide both clinicians and the health care system to develop strategies [for] providing timely and effective care to this highly vulnerable group of patients,” she said. “The morbidity and mortality associated with cirrhosis and hepatocellular carcinoma may be greatly reduced if potentially life-saving interventions – such as liver transplantation, local ablation and surgical resection – are applied in a timely manner,” they noted. However, recent data from other studies demonstrate that patients with cirrhosis rarely receive high-quality health care, and their own previous research found that “the quality of health care given to patients with hep C falls far short of that recommended by practice guidelines.” In this study, only 16% of the cohort had ever received treatment. • Abridged from internalmedicinenews.com (1 Apr 2011) http://tinyurl.com/3n99wpd

news Hep C costs big: Ontario study Canada – A recent study from Ontario looked at the burden of illness – healthy years lost – and found the top 10 culprits were hep C, Streptococcus pneumoniae, human papillomavirus, hep B, E. coli, HIV-AIDS, Staphylococcus aureus, influenza, C. difficile and rhinoviruses (the common cold). Dr Jeff Kwong, a researcher at the Institute for Clinical Evaluative Sciences, said he believes it’s the first time so many diseases have been ranked in this way. “The final list that comes out of it has a few surprises for where we should be focusing our attention in terms of keeping the population of Ontario healthy, and a few lessons for the future as well,” said Dr Natasha Crowcroft, director of surveillance and epidemiology at the Ontario Agency for Health Protection and Promotion. Hep C got a higher ranking than other diseases that killed more people because it tends to affect people at a younger age. The total burden from all infectious diseases is roughly equal to 25% of the burden of all cancers, the report said. The findings will make public health officials more aware of the most burdensome infections and help them plan prevention programs, Kwong said. “Needle exchange programs help prevent transmission of hep C from one drug user to another, and people at the programs are screened for hep C and receive counselling and referrals for treatment,” said Dr Rita Shahin, associate medical officer of health at Toronto Public Health. It’s important to raise awareness within immigrant populations about the importance of screening for both hep B and C, she said. “With hepatitis B there’s a vaccine that’s very effective. And it would be important to be able to protect other people living in the household,” she said. • Abridged from metronews.ca (14 Dec 2010) http://tinyurl.com/3d8qpfo

Hep Review

Edition 73

June 2011

news Home tattoo kits putting teenagers at risk UK – Teenagers are putting themselves at risk of debilitating and potentially deadly blood diseases by buying DIY tattoo kits over the internet. The kits come with inks, needles and designs but there are no controls over age of the recipient or cleanliness; breakdowns of which can lead to transmissions of infectious diseases. The Chartered Institute of Environmental Health (CIEH) sounded the alarm after carrying out an investigation into tattooing trends. Professional parlours are legally required not to tattoo anyone under 18 and are licensed and inspected by local authorities. By contrast, Chinese-made kits often have no instructions. “The age of consent goes out the window. You are not going to ask questions about health. You could be tattooing your mates all in one go and passing on blood-borne infections. You also cannot trace people if anything goes wrong,” said Julie Barratt, the CIEH director. In a related CIEH study, researcher Stephanie Powell, found that more than half of professional tattooists broke rules on best practise. Students visited parlours posing as potential customers and asked by telephone whether tattooists would work at an all-weekend 30th birthday party. Of the 33 parlours visited, only 52% offered any advice. Only 7% asked for proof that the client was an adult. Of 56 licensed parlours asked whether they would attend the party, 49 rejected the idea. However, seven accepted despite the likelihood of the clients’ decisions being influenced by alcohol or peer pressure. Charles Gore, the Chief Executive of The Hepatitis C Trust, said: “The rise in DIY tattooing is particularly alarming when you consider viruses such as hep C.” • Abridged from independent.co (29 Mar 2011) http://tinyurl.com/3fwexrn Also see ED72 page 42.

US genetic testing rolling out USA – Scripps Health is one of the first health systems in the US to offer genetic testing as part of its hep C care. The tests offer hope to more than four million patients diagnosed annually in the US with hep C. The genetic test determines whether patients have a gene variant that predicts a favourable cure rate if they are treated with the drug combination therapy of pegylated interferon and ribavirin. “This is a huge step forward in the movement toward individualised medicine,” said Dr Paul Pockros, clinical director of research at the Scripps Translational Science Institute, head of the Division of Gastroenterology and Hepatology and director of the Liver Disease Center at Scripps Clinic. This is the first of numerous genetic tests that will give doctors vastly improved data, leading to better prescription of drug treatments. Later this year, a second test will be available that will accurately predict anaemia in hep C patients taking the pegylated interferon and ribavirin drug combination. This will allow doctors to modify the therapy before starting the regimen to prevent patients from developing this problematic side effect. Genetic testing for hep C patients carries significant implications for patient care, as there are more than four million infected people in the United States, most of them undiagnosed and untreated. Scripps Clinic now routinely orders IL28B genotyping on all patients with hep C who are potential candidates for antiviral therapy. If the patients have a favourable IL28B genotype and advanced fibrosis on liver biopsy, doctors can initiate therapy with the current standard of care. If patients have a less favourable genotype or they have mild fibrosis, doctors can recommend waiting for new drugs (yet to be approved by the FDA). • Abridged from biomedme.com (28 Feb 2011) http://tinyurl.com/42vgcsl Also see Edition 71, page 17.

12 www.hep.org.au

news Vertex recommends Chinese fatty liver disease rife wider screening USA – If Vertex Pharmaceuticals gets its way, most people over 50 could get blood tests to screen for hep C at the doctor’s office. If the US Centers for Disease Control (CDC) agrees, it could prompt another one million people who don’t realise they have hep C to come forward for Vertex’s new treatment over the next few years. Vertex is one of the sponsors of what’s called the Viral Hepatitis Action Coalition, a public-private partnership with the CDC, which is conducting studies known as BEST-C. These studies could determine how effective it is to screen patients for hep C infection more widely. These studies, which are expected to cost a total of A$3.41 million, could be worth billions to Vertex if they show that screening random Baby Boomers is beneficial. An estimated 600,000 patients in the US are expected to seek treatment that could include Vertex’s drug, telaprevir, or boceprevir, a rival offering from Merck. • Abridged from xconomy.com (2 Feb 2011) http://tinyurl.com/3zh2pqn

China – Data compiled by the Taipei-based Lianan Wellness Center showed that about 45% of office workers screened last year have fatty liver disease. According to the liver screen information from over 15,000 corporate employees aged between 30-50 who had health checks at the Lianan Wellness Center, fatty liver disease tops the list of liver abnormalities. People who eat too much and exercise too little have a 20% chance of getting fatty liver disease even though their weight is at the normal level, Cheng Nai-Yuan, Lianan’s superintendent, pointed out. Cheng suggested people reduce their intake of desserts, snacks and other fatty foods, dine before 8pm and cut back on late night snacks. • Abridged from chinapost.com (18 Jan 2011) http://tinyurl.com/3wmbhl8 Such news highlights the importance of people with any type of liver disease staying as healthy as possible. For more information, please phone the Hepatitis Helpline.

STOP PRESS STOP PRESS STOP PRESS STOP PRESS STOP PRESS STOP PRESS

United States FDA approves telaprevir and boceprevir USA – The United States Food and Drug Administration has now formally approved Victrelis (boceprevir) and Incivek (telaprevir) to treat chronic hep C infection. This follows positive assessments from the FDA’s advisory committee made over the last six weeks. The treatments are for people who have either not previously received interferon-based drug therapy for their infection or who have not responded adequately to prior therapies. They are approved for use with pegylated interferon and ribavirin – resulting in a triple therapy combination that gives greater chance of sustained virological response (cure).

“There are now two important new treatment options for hep C that offer a greater chance at a cure for some patients with this serious condition,” said Dr Edward Cox, director, Office of Antimicrobial Products in FDA’s Center for Drug Evaluation and Research. “The availability of new therapies that significantly increase responses while potentially decreasing the overall duration of treatment is a major step forward in the battle against chronic hep C infection.” • Abridged from www.fda.gov press releases (13 and 23 May 2011) http://tinyurl. com/43x2fxu and http://tinyurl.com/3zcr5s9

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news Keeping up pressure on hep A USA – Eating raw or under-cooked molluscs may pose a safety hazard if they are harvested from waters polluted with sewage. Subsequently US Department of Agriculture scientists are studying ways to enhance the food safety of these popular shellfish. For example, USDA molecular biologist David Kingsley at Delaware State University is investigating the use of a specialised commercial procedure known as high pressure processing (HPP) to inactivate viruses. HPP equipment compresses water to create intense pressures as high as 620,500 kilopascals (pressure in car tyres is around 30 kilopascals). In tests targeting hep A virus, the team showed that HPP treatment of 410,000 kilopascals for five minutes inactivated 99.9 percent of the virus in oysters that had been exposed to the pathogen in laboratory tanks. The hepatitis A studies led to a collaboration with researchers in Italy, where raw or lightly cooked Mediterranean mussels, popular in European markets, are sometimes a vector for the virus. HPP is not perfect. For instance, the pressure needed to inactivate hepatitis A virus may alter the taste and texture somewhat. Additional research may reveal ways to mitigate these changes. • Abridged from esciencenews.com (19 Apr 2011) http://tinyurl.com/43ezwfs Hep A is a virus that makes people sick, but only for 1-3 weeks. It is transmitted by anything contaminated with sewerage (or human faeces) that comes in contact with the mouth. Because illness only lasts a few weeks, treatment is not needed. There is a safe and effective vaccine. Ed

14 www.hep.org.au

Hep B potatoes developed USA – Outside, it was a chilly, damp morning. Nothing much was growing in the industrial park on Delavan’s east side. Inside, however, the weather was sunny and bright and plants were bursting into life. They looked like plain, boring potato plants, but these potatoes are like no others in the world. They make medicine. “This is the farm of the future,” Bob Britt said. “It‘s the world’s leader in plant-derived biomanufacturing.” Britt and his partners at PlantPharm have genetically engineered potatoe plants to create the hep B vaccine. The production method will make a cheaper, more stable hep B vaccine than is available on the market, Britt said. Plants are a good medium for producing pharmaceuticals as opposed to using mammalian tissues, Britt said, because plants don’t transmit diseases to humans. Plants grow faster than animals, and it’s much less expensive to screen plants for high yields than it is to screen cattle, he said. • Abridged from gazettextra.com (24 Apr 2011) http://tinyurl.com/3wz3ceo

Image courtesy of Google Images

Smokers – we want your organs Australia – Transplant patients are being given the healthy organs of packet-a-day smokers, heavy drinkers and the elderly to give more people on the waiting list a chance of survival. Surgeons are also transplanting the unaffected body parts of cancer patients and have begun a new registry for donors with hep C. Donor rates in Australia lag behind many countries, prompting doctors to extend the criteria for acceptable donors to include people who have died from heart failure, rather than only brain-dead casualties. About 1,700 people are on the official organ transplant waiting list at any one time, with two people dying a week while waiting. Professor Jeremy Chapman, past president of the worldwide Transplantation Society, said more lives could be saved if surgeons used organs from patients who had not previously been considered “ideal”. “An ideal donor would be a very fit young man who’s had an isolated head injury and nothing else,” he said. “Fortunately, that type of donor is disappearing because we’re getting much better in Australia at reducing the number of traffic accidents and the care of patients who have head injuries.” Professor Chapman’s unit handles all the combined kidney-pancreas transplants for NSW, Queensland, the ACT, Northern Territory and Western Australia. • Abridged from couriermail.com (2 Jan 2011) http://tinyurl.com/3rjtx6u

news NSW Aboriginal hep C media campaign New South Wales – Under the National Partnerships Agreement for Indigenous Health, the Aboriginal Health & Medical Research Council received funding to carry out an Aboriginal Hepatitis C Media Campaign. Black Chili Productions were successful with their tender in rolling out the campaign which is designed to be Aboriginal community-focused and driven. The media campaign pitch is “Where’s the Shame, Love your Liver”. The first of a series of Aboriginal community workshops kicked off on 18 May in Nowra, with more workshops planned throughout 2011. The prevalence of hep C is up to three times higher amongst Aboriginal people, while treatment uptake is lower than in the wider population. • Kerry Walker, Hepatitis NSW

HALC

legal centre is now able to offer free help with hep C legal issues

HALC is a community legal centre providing free advocacy and advice. 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 halc@halc.org.au or telephone us on 02 9206 2060.

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June 2011

news Share a needle, share hepatitis C New South Wales – If you’ve heard it before, that’s probably because it’s true. “Share a Needle, Share Hepatitis C” – that’s the headline from the upcoming NSW Health hep C health promotion campaign. The campaign aims higher than just a catchy grab. It’s got all the usual suspects: a poster and a brochure, and these are solidly backed by some new resources – a kit packed with games and activities for youth and health workers to use when working with clients on hep C knowledge around transmission, prevention, stigma and discrimination. The campaign will feature a phased roll-out with the launch of an online component later this year, aimed at engaging young people through social media platforms. It’s a timely campaign, linking with the launch earlier this year of the Healthy Bodies, Healthy Minds, Vibrant Futures NSW Youth Health Policy 2011-2016. The policy lays out three goals: young people are encouraged and supported to achieve their optimal health and wellbeing, young people experience the health system as positive, respectful, supportive and empowering, and responses to the health needs of young people are evidence-based, promote prevention and early intervention and are delivered efficiently and effectively. Great goals, and by the looks of it the campaign “Share a Needle, Share Hepatitis C” is a simple message being delivered in a complex and hopefully far-reaching way. • Bruce Cherry, Hepatitis NSW

16 www.hep.org.au

Hep E warning at Canberra restaurant Australian Capital Territory – People who ate at an Indian restaurant in Manuka have been warned to be on alert for symptoms of hepatitis E after a food handler was diagnosed with the disease. Acting Chief Health Officer Paul Kelly issued a public health alert for people who ate at the Aladdin restaurant between 3-21 March. “Symptoms usually develop 15-60 days after exposure to the virus,” Dr Kelly said. Typical signs and symptoms of hepatitis E include loss of appetite, abdominal pain and tenderness, nausea and vomiting, fever, dark urine and yellowing of the skin and eyes. “Hepatitis E is a virus that causes inflammation of the liver and the hepatitis E infection usually causes mild disease and normally resolves on its own without treatment,” Dr Kelly said. “The disease, however, can be more serious for those with existing liver disease, those who are immune-compromised and those who are pregnant, especially those in the last trimester.” ACT Health said the food handler stopped working as soon as the symptoms became apparent and there is no current risk of infection from the restaurant. • Abridged from canberratimes.com (6 April 2011) http://tinyurl.com/3s3h9kz Hepatitis E is transmitted via the faecaloral route. It doesn’t develop into a chronic infection, however, the infection is more severe among pregnant women in the third trimester. Symptoms include fever, weakness, fatigue, loss of appetite, nausea, vomiting and jaundice. It is found most commonly in developing countries, especially India, Asia, Africa and Central America. For more detailed information visit http://tinyurl. com/3kxdz4o

news Student focus on hep C

feature Hep trial breaks new ground

Victoria – Sunbury Downs College students are helping raise awareness about hep C among young people.

Victoria – A new treatment for hep C trialled at the Alfred Hospital in Melbourne has cut debilitating side effects and reduced treatment times, creating the potential for many more patients to be cured of the virus.

Representatives from Hepatitis C Victoria visited the school last week to educate Year 11 students on the infectious disease. Organising teacher, Michelle Nugent, said it wasn’t about scaring students, but ensuring they knew about prevention and treatments. Students are taking part in a competition run by Hepatitis C Victoria called Street Shot, a health promotion initiative using photography as a medium to educate young people about hep C issues. Students will take photos to reflect issues related to hep C and also submit a short essay explaining their entry. “It’s not meant to be scare tactics but awareness. Even if you have it it’s not a death sentence – it’s about finding out about your health,” Ms Nugent said. • Abridged from macedonrangesweekly.com (29 Mar 2011) http://tinyurl.com/42tex3u

Researchers have found that a combination drug without interferon is more effective. The study, published in The Lancet and funded by the drug company Roche, involved 88 patients from six hospitals in Australia and New Zealand. Alfred Hospital director of gastroenterology, Associate Professor Stuart Roberts, said the success of the combination drug which inhibits enzymes that cause the virus to multiply was an exciting breakthrough. “The interferon-free treatment ... will see a lot more people taking up treatment because of the lack of major side effects,” Professor Roberts said. “It may also open up opportunities to increase treatment outside specialist centres in the hospitals because there is less requirement for intensive care and monitoring of patients. “Introducing this treatment as standard practice is a few years off, but this study provides a proof of concept that it can be effective,” he said. • Abridged from canberratimes.com (15 Mar 2011) http://tinyurl.com/3zxgmqt

Q&A:

What can people do if they want to wait for new hep treatments – or don’t want to have treatment? Our clinical advisors agree that people with viral hepatitis can adopt simple yet sometimes difficult steps to benefit their long term illness: Cut back on alcohol – the Australian guidelines for the general community are two standard drinks per day (irrespective of gender). This should be the upper maximum of everyone with viral hepatitis.

If you are overweight, lose those extra kilograms. Being overweight is associated with developing diabetes – a condition linked to worse liver disease outcome. Being overweight is also associated with poorer response to interferon-based hep C treatment. Overweight people more commonly have fatty liver disease – a condition which people with hep C wouldn’t want on top of their viral liver disease.

For more info, phone your Hepatitis Helpline – 1300 437 222 (local call costs)

Hep Review

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June 2011

feature

New drugs herald dawn of better

Triple cocktails with new hep C drugs will shorten treatment periods and increase the chances of cure,

wo new drugs for the treatment of the most common form of hepatitis C may hit the market in Australia by the end of next year. While they won’t revolutionise the treatment of hep C, they will generally shorten treatment periods and increase the chances of a cure for people with the most common genotype in Australia, genotype 1. The new drugs, Incivek (telaprevir) and Victrelis (boceprevir) are protease inhibitors and will be taken by tablet. But treatment will still involve taking pegylated interferon by weekly injection and ribavirin by daily tablets. While treatment for hep C has improved markedly in recent years, the side effects can be gruelling, and a cure is far from certain.

Image by Irargerich, via flickr.com

18 www.hep.org.au

In the case of people with genotype 1, standard treatment with pegylated interferon and ribavirin results in a cure rate between 40% and 50% and requires a 48-week treatment period. For people with genotypes 2 and 3, cure rates are up to about 80% and treatment usually requires 24 weeks treatment. But genotype 1 is the most common type in Australia accounting for about 50% of cases. For “non-responders” and “relapsers”, that is people who go on treatment but don’t achieve a cure*, there are few options at present. They can be given another round of treatment with interferon and ribavirin, but their chances of a cure are quite limited.

feature

hep C treatments

writes Peter Lavelle.

While the side effects of treatment – which include flu-like symptoms, skin rashes, weight loss, depression, and insomnia – can be difficult to manage, it is believed that many people may have exaggerated concerns about them. As a possible result of this – and due to rigourous clinical assessment by treatment specialists – only a small percentage of people who have hep C have actually undergone treatment. According to the Third National Hepatitis C Strategy 2010-2013, while 226,500 Australians have chronic hep C, only 3,500 a year are undergoing treatment, despite 9,700 new infections and 330 deaths occurring annually. But the protease inhibitors promise a significant advance on current treatments, in terms of improved cure rates and shorter treatment times.

One of the problems with the current combination of interferon and ribavirin is that neither drug specifically targets the hep C virus. Interferon is a stimulator of the immune system, helping the immune system to rid the body cells affected by the hep C virus. Ribavirin is an antiviral drug but does not specifically target hep C – but the new drugs do. Protease inhibitors are a class of drugs known as directly-acting antivirals. Protease inhibitors block the hep C virus from making new copies of itself. The virus produces enzymes called proteases which cut proteins inside liver cells into smaller pieces so they can be used to manufacture more hep C viruses. Protease inhibitors block this process so inhibit the manufacture of new hep C viruses.

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feature Paul is one person to benefit from the new protease inhibitors currently being developed. Last year, he underwent a medical trial of a new protease inhibitor used in combination with current pegylated interferon and ribavirin therapy. This was a great opportunity for him as he’d tried standard pegylated combination treatment in 2003 and although he responded well on treatment, the virus bounced back soon after his treatment finished. “My specialist said that with this new protease inhibitor drug I had an increased chance of clearing my hep C, and I didn’t want to let the chance slip by,” he said. “After 12 months of triple-treatment and more than six months of follow-up, I’ve now had two confirmatory tests which show that I’m hep C free,” he added. Two other protease inhibitors are in more advanced stages of development. Telaprevir is manufactured by Vertex Pharmaceuticals (to be distributed by Janssen in Australia), and boceprevir is manufactured by Merck. Professor Geoff Farrell, Professor of Hepatic Medicine and Gastroenterology at the Australian National University Medical School, says he expects that the drugs will be on the market in Australia by the end of 2012. “They’ve been fast tracked for approval in North America and Europe. We expect to see them on the market there by July this year, and in Australia by the end of next year,” he says. Both drugs will be taken as tablets, three times per day.

20 www.hep.org.au

The drugs have been extensively trialled in Europe, the US and in Australia. They have been tested in people with genotype I who have undergone existing treatments with interferon and ribavirin but failed to get a cure, or SVR (sustained viral response). The drugs have also been trialled as first line treatments in combination with interferon and ribavirin, as triple therapy, in people who have not yet had any treatment for their hep C. Clinical trials such as the ADVANCE, ILLUMINATE and REALIZE trials have consistently shown that adding telaprevir or boceprevir to standard treatment (peginterferon plus ribavirin) increases SVR rates. In people with genotype 1, the increase is from 40-50% to 80%. Additionally, in more than half of trial participants, these cure rates were often achieved with just 24 weeks rather than 48 weeks of treatment. There is little to choose between the two new drugs in terms of their effectiveness, although telaprevir may be more effective in people who have shown no response to previous treatment. Professor Farrell says the biggest improvement is seen in patients who are especially hard to treat; that is, people who have cirrhosis, obesity, insulin resistance (i.e. pre-diabetes) and/or a high viral load. “Adding a protease inhibitor raises the cure rate from 20% to 65% in these hard-to-treat patients,” he says. However, there is a downside: patients on triple therapy reported more side effects than those on conventional dual therapy. Side effects included skin rash (the most common side effect), anaemia, fatigue, fever, headache, nausea,

feature insomnia, diarrhoea and flu-like symptoms. However, in most cases, side effects were mild or moderate and could be addressed by lotions or medications. Skin rashes were less likely with boceprevir than with telaprevir. Because of the side effects, more people dropped out of the triple therapy regimens than standard treatment – around 15% in some studies, compared to 5% for standard dual therapy. Another problem is that boceprevir and telaprevir have been designed to treat people with genotype 1. They are ineffective against genotypes 2 and 3, although other classes of directly acting antivirals are being developed against these other hep C genotypes. Nevertheless, these drugs are a significant advance in the treatment of hep C, says Professor Farrell. He expects them to be licensed and available on the Pharmaceutical Benefits Scheme in Australia for use as first line treatments and for use in people who’ve failed previous treatment regimes. As a result, people whose disease has advanced to cirrhosis, who are therefore at risk of liver failure or liver cancer, now have a greatly increased chance of a cure. He says the protease inhibitors will almost certainly be followed by other drugs that will improve the outlook even further for people with hep C. At the latest EASL (European Association For the Study of the Liver) conference in Berlin in March this year there was a great deal of interest in two new experimental drugs called BMS 790052, an NS5A replication complex inhibitor; and BMS 650032, another protease inhibitor. Evidence presented at the conference showed that when

these two drugs were taken in combination with interferon and ribavirin (quadruple therapy), they produced a cure in most people who hadn’t responded to past therapy. Furthermore, nearly 40% of people who had previously not responded to treatment achieved a cure with just these two drugs without interferon and ribavirin. Results like these raise the possibility of future treatment for hep C without interferon being used at all. “Taking interferon out of the mix is a holy grail of hep C treatment”, says Professor Geoff McCaughan, head of the AW Morrow Gastroenterology and Liver Centre at the Royal Prince Alfred Hospital in Sydney. “Interferon is responsible for many of the more severe side effects of treatment, and if it can be eliminated from treatment then many more people can be treated,” he says. It may not be long before the worst side effects of hep C treatment are a distant memory. The speed with which new treatments are being developed has taken everyone by surprise. Professor McCaughan believes it may soon become possible to achieve a cure in almost all patients with hep C and one day to possibly even eradicate the disease. • Peter Lavelle is a freelance health writer who regularly contributes to Hep Review magazine. p.lavelle@optusnet.com.au “Non-responders” are people who experience no observable benefits while on treatment. “Relapers” are people who achieve a full or part viral clearance while on treatment but whose viral load bounces back after treatment is finished. *

Image by Irargerich, via flickr.com

Hep Review

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June 2011

my story

Meera’s story: That summer dre

was watching television one spring night when the awareness that hep C was eating away at my liver came to mind. I had lived with the chronic virus for 22 years. The first ten years I was asymptomatic, uneducated and in denial, but gradually fatigue and other symptoms – liver pain and brain fog – kicked in, impacting every area of my life. In time, I learnt more about hep C and the more I learnt the more anxious I became. I saw specialists in various cities over two decades, had two liver biopsies, and tried some alternative therapies and supplements to manage the symptoms. I was told I was genotype 2 by an excited specialist in 2002, and if you have to have hep C genotype 2 is the one to have. After that, every medical professional I saw upon learning of my genotype, expressed astonishment that I had not yet undergone treatment, because genotype 2s have the best clearance rate of all the genotypes, and the shortest treatment duration. Whether I was met by encouragement or impatience, not one of them acknowledged the terrified human being sitting before them. I had heard the horror stories and was particularly prone to anxiety about health and drug sideeffects so, genotype 2 or not, when I turned 40 I made a calculated guess about how much my fibrosis (liver scarring) might have progressed since my last biopsy. Though I figured I could well be getting close to cirrhosis, I decided I couldn’t face treatment and that I’d rather take my chances with the virus. I led a healthy, liver-friendly lifestyle – no alcohol and a good diet – and felt it was possible I would, even with the significant degree of damage I had sustained, die [in my older years] of something unrelated. And so, on that night late in 2005, I rehashed the story I had been telling myself for years: treatment might kill me, it might leave me with permanent disability or side-effects, it might not work, I am not brave enough, not strong enough, too sensitive to drugs, too psychologically fragile, too scared. But, just as I was about to come to the usual conclusion, another voice – loud and clear – entered my subconscious and commanded DO IT. I felt a seismic shift as fear gave way to conviction and I decided to obey that voice.

22 www.hep.org.au

I walked into the office of my specialist some weeks later and announced my decision. She smiled and said, “Good”. Back in 2004, I had tried treatment, lasting nine days before I stopped, felled by a bacterial infection in the first week (either due to bad luck or a plummeting white blood cell count), panic attacks and endless crying jags (having refused to go on anti-depressants prior to starting as recommended by the clinic). I limped out of the experience, more fearful and doubtful of my ability to withstand it than ever. It was another two years before I tried again, but this time I was resolved. I had spent decades resigned to living with this virus and had finally found some courage. I had a vision of the life I wanted and it did not include hep C and its burden of fatigue and worry. I was still afraid, and painfully aware of the dangers and possible consequences of treatment, but I was ready to do battle. As start day approached, I mentally chanted a mantra: ”the drugs are powerful but I am more powerful”. I began the long process of visits to the hospital for screening and preparatory consultations with the nurses. I decided to take the anti-depressants this time, and to see the clinic psychiatrist. We talked about my previous experience, how my terror of both treatment and cirrhosis had dogged me for years. I told the psychiatrist I felt the need to face the treatment demon as much for the benefit to my mind as my body. He nodded. “It’s your Mount Everest,” he said. Start day arrived. I would self-administer weekly shots of interferon and take two doses of ribavirin every day for six months. The drugs affect everybody differently so there was no way of knowing what side-effects would emerge, although some were more predictable than others. Having cleared the decks of my life, I opened the fridge and took out my first shot. On the day of my first shot, the irony became evident. My hand held the syringe, hesitating and shaking. I did not want to inject myself with a substance that would make me feel bad. It felt like the karmic opposite of shooting heroin: the price of those ancient highs. A few hours later

my story

ess

The first few weeks of treatment were tolerable. I endured the intense flu-like symptoms noted in the brochures after each shot and my energy dropped, but it was bearable with scaled back activity and expectations. Gradually I grew weakened by anaemia caused by ribavirin, which destroys the production of red blood cells. Despite the anti-depressants, I was often angry and apprehensive. By week four, I felt like a soldier sleeping with one eye open, as a litany of curious side-effects kicked in. At the same time I had to find a way to relax into the peculiar new normal, a way to make peace with the changes in my body. I had hep C positive friends and was lucky enough to have one undergoing treatment at the same time but I often felt lonely and isolated. So I hunkered down at home with a host of new rituals, like eating small amounts of food often to reduce the nausea. Around week seven, nasty gastro-intestinal sideeffects hit – I was one of an unlucky one-third who get them, according to the drug company – but was helped by massive doses of probiotics. The anaemia made my legs and arms weak. I sometimes had tantrums known as “riba rage”. I couldn’t tolerate stress at all, and when the “sides” piled up and overwhelmed me, I broke down muttering “I can’t do it. I can’t do it.” The days and hours dragged at times, and I fantasised constantly about the end. I often wondered if I would make it that far. I clawed my way through the days, longing for a break from the sides and minor complications, but the interferon laughed and continued its handiwork. I had been given the thrilling news that I had cleared the virus following a week four PCR – I was an “early responder”. Hep C was undetectable in my bloodstream for the first time in over 20 years, so I was more determined than ever to see it through but, even so, some

days brought me to despair. One day when the interferon was kicking my arse, I walked past a boutique and saw a summer dress. I realised that by the time it was warm enough to wear it, treatment would be over. I bought the dress and it hung in my closet for months more of the treatment, a symbol of hope and the future. I reached the endpoint a wreck but with a strong sense that I’d do it all again for a chance to be free of hep C. I felt I had gained something important besides a new strength of character and confidence in myself. I had spent six months holed up and shut down, a machine whose only purpose was to withstand the drugs and deal with the curve balls they threw me. When I finally faced the prospect of coming back to my life and myself, I felt excited and emotional. I injected my final shot, sat down to dinner, and burst into tears of grief and relief. Recovery from treatment might be quick and easy for those who breeze through it, but for people like me who come off the battlefield battered, it’s more like a lengthy rehabilitation. It was not just physical either; treatment requires some of us to confront ourselves and our lives so deeply it can facilitate major internal and external change. The very act of choosing to undergo it signalled for me a new age, a decision to claim the life I want. Six months post-treatment I felt like a new woman. The heavy burden of fatigue I’d lived with for years is gone and I am enjoying the kind of full and busy days I had enviously watched others enjoy. I had every reason to be hopeful I’d remained negative and yet that moment of waiting for confirmation was nervewracking. “Hepatitis C undetected” at the golden “Sustained Viral Response” stage sounded like the sweetest words in the English language and hearing them made it all worthwhile. • Meera Atkinson, 45, is a Sydney based writer. This is an extract from her essay “My Mount Everest” originally published in the Griffith Review, Edition 17 (2007) and taken from Treatment, Life, Hep C and Me (2009), Hepatitis Australia.

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June 2011

Image by rosipaw, via flickr.com

my body started aching, like flu, and I felt an odd indescribable sensation of being no longer of and in the world in the usual way. It was as if I had entered a twilight zone, a world in which I no longer knew the perimeters and in which I no longer enjoyed the illusion of control.

obituary Baruch Blumberg dies at 85

r Baruch Blumberg, the Nobel Prizewinning scientist who discovered the hep B virus, showed that it could cause liver cancer and then helped develop a powerful vaccine to fight it, died recently at age 85. Dr Blumberg’s prize-winning virology and epidemiology work saved millions of lives. It began in the 1960s and took him and his colleagues on field trips around the world, from Japan to Africa. Their work led to the discovery of the hep B virus in 1967, the first test for hep B in the blood supply and the development, with Dr Irving Millman, in 1969 of the hep B vaccine. His scientific field trips to pinpoint the agent responsible for blood-borne jaundice took Dr Blumberg and his colleagues to the Philippines, India, Japan, Canada, Scandinavia, Australia and Africa. Ultimately it was blood serum from an Aboriginal Australian that yielded the so-called Australian antigen, a protein found on the surface of the hep B virus. Dr Blumberg’s discoveries are credited with saving millions of people from ever developing liver cancer. But in his scientific autobiography, Hepatitis B: The Hunt for a Killer Virus, he observed ruefully that hepatic disease was still killing 1.5 million people a year worldwide, despite the widespread availability of the vaccines he helped develop, and that 350 million were chronically infected. By the late 1990s Dr Blumberg was immersed in astrobiology, as NASA called the new science. Appointed by the NASA administrator, Dan Goldin, to lead the Astrobiology Institute, Dr Blumberg and his team were asked to address three profound questions: How does life begin and evolve? Does life exist elsewhere in the universe? And what is life’s future on Earth and beyond? • Abridged from nytimes.com (6 April 2011) http://tinyurl.com/3jmub9k

feature EASL update from Professor Greg Dore

Exciting news on hep C developments emerge from a recent European liver meeting.

ew developments in hep C treatment were discussed at the recent European Association for the Study of Liver Disease meeting. The Bristol-Meyers Squib (quadruple) study demonstrated that in genotype 1 prior nonresponders the quadruple therapy regimen had a 100% SVR (viral clearance) and when you take interferon/ribavirin out of the regimen, four out of 11 patients still had a SVR. This was the first demonstration that BMS’s two new protease inhibitors are curative. The low sample size means these results are very preliminary, albeit exciting. The high SVR with the quad therapy is considerably higher than what has been seen with interferon/ribavirin/ protease inhibitor triple therapies (including telaprevir and boceprevir) in prior nonresponders (around 30%). Thus, there will be several further studies of Quad regimens from different pharma companies in prior non-responders, and possibly other difficult to treat groups (e.g. genotype 1 treatment naive patients with advanced fibrosis). The next steps for interferon-free regimens will be dual regimens that contain a nucleoside or nucleotide agent (which generally have a high genetic barrier to resistance), or triple regimen (with or without ribavirin). There was some incredibly exciting data presented on a Pharmasset nucleotide analogue that was used in both genotype 1 and genotype 2/3 patients. In the gen 2/3 study 25 treatment naive patients were treated with PEG/RBV/NI for 12 weeks. One patient pulled out but in the others, 24/24 achieved viral clearance 12 weeks post-trial. If they remain clear at 24 weeks, this would be pretty impressive. Again, larger studies are required. • Professor Greg Dore is Head of the Viral Hepatitis Clinical Research Program at The Kirby Institute. He is also an Infectious Diseases Physician at St Vincent’s Hospital, Sydney.

24 www.hep.org.au

Don’t bleed on me

Think sport and blood rules; now think of the wild, entertaining world of TV wrestling.

he trailer for a new documentary, Don’t Bleed On Me: Wrestling’s hepatitis C secret revealed, was released on YouTube recently.

The film tells the story of Devon “Hannibal” Nicholson, a Canadian wrestler who tried for many years to get into the WWE. When he finally got the call that he was getting a developmental contract, he went to a family doctor for a physical and tested positive for hep C.

my feature story

The Little Book of Hep C Facts

Nicholson claims the only way he could have gotten this was by co-mingling his blood with WWE Hall of Fame inductee, Abdullah the Butcher. Superstar Billy Graham appears in the video, where he talks about hep C, blood and wrestling. • Abridged from 411mania.com (2 Apr 2011) http://tinyurl.com/3gcl3cf

Do you know your basics about hep C? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep C Facts, Hepatitis C Council of South Australia. • Aside from injecting drug use, hep C has also been contracted from: blood product transfusions before 1990 unsterile medical, dental and cosmetic procedures (particularly in countries with low levels of infection control) unsterile tattooing and body piercing • Hep C is NOT a sexually transmitted infection. However, when blood is present during sex, there is a very low chance of transmission • It’s perfectly okay to share food, drinks, hugs and kisses with someone who has hep C • You can’t catch hep C from toilet seats • You can’t catch hep C from mosquitoes • The risk of mothers passing hep C to their unborn child is very low. Breastfeeding is encouraged for women who are hep C positive, as it is for women in general.

Image via Google Images

Abdullah the Butcher’s crowd-pleasing brand of showmanship – purposefully cutting the head and face of a fellow wrestler.

This is the second instalment of our excerpts from The Little Book of Hep C Facts. Please see our following editions for all 34 hep C facts – or check out the booklet at http:// tinyurl.com/2en75mx

Hep Review

Edition 73

June 2011

Image by semireal_stock, via www.deviantart.com

feature

Hepatitis Awareness Week 2011 Want to help raise awareness of viral hepatitis? Hepatitis Awareness Week activities are rolling out across NSW in late July.

ou might not be aware, but the date for World Hepatitis Day was changed last year – its new place on the calendar is 28 July. Why? That’s the birthday of Nobel Laureate, the late Professor Baruch Blumberg. Professor Blumberg was a leading figure in the discovery of what was then the “Australian antigen” – the hepatitis B virus – and Blumberg’s work led ultimately to the development of a vaccine. World Hepatitis Day falls within Australia’s Hepatitis Awareness Week. In NSW, during that week (25-31 July) we will see awareness-raising activities and projects showcased across the state. Hepatitis NSW is again running its Community Grants Program to fund awareness raising activities around the State. Applications for the Community Grants Program closed on 13 May. In the past the Community Grants Program has generated a wide range of innovative and exciting projects and activities that targeted a wide variety of key communities and populations.

thINK About It is a temporary tattoo design competition run by Hepatitis NSW. Get involved by registering online at www.hep. org.au to run a hep C workshop with the young people you work with (12-25year olds). Three designs will be selected to be printed as temporary tattoos and distributed as Hepatitis NSW Awareness Week resources to services across New South Wales. Winning entrants will receive $300 each in prizes. 26 www.hep.org.au

Hepatitis NSW staff will again provide specialised workshops and education sessions to further build the capacity of workers across the state who organise the vibrant community events and staff will also attend and offer support at local activities. thINK About it, an exciting temporary tattoo design competition targeting young people (see below) is also being run and the winning designs will be announced and launched during Awareness Week. For information about Community Grants, thINK About it, and other Hepatitis Awareness Week activities, please go to www.hep.org.au • Sarah George, Hepatitis NSW

promotions

feature

Liver risks for unfit teens Australian teenagers are becoming so overweight they are damaging their livers in ways normally seen in older alcoholics.

esearchers have discovered fatty liver disease – a condition that is normally found in older people who are overweight, obese or heavy drinkers – at alarming rates among Australian teenagers. The study of 1,170 otherwise healthy West Australian teenagers found about 13% of 17-yearolds had the condition. This is the first generation of teenagers with rates of excess weight and obesity that prompted a search for the condition, said study leader Dr Oyekoya Ayonrinde. But the lack of information from other generations meant the long-term complications for those teenagers remains unknown. Fatty liver disease occurs when fat builds up to become more than 10% of the liver’s weight. It can lead to inflammation and scarring and when cirrhosis of the liver occurs, it can lead to liver failure and even death.

2 diabetes and heart disease, said Dr Ayonrinde, a gastroenterologist and hepatologist at Fremantle Hospital and the University of Western Australia. His study, published in the journal Hepatology, found the condition was more common in girls, but boys tended to have a more severe form of it. Professor Jacob George, at the University of Sydney and Westmead Hospital, said doctors did not see children with cirrhosis or liver failure 20 years ago, but now they were reporting such cases. This meant if the lifestyles of those teenagers did not improve, they could experience serious liver problems in their 30s and 40s. He said it was likely that obesity could take over from hepatitis and alcoholism as the biggest cause of liver failure and liver cancer. • Abridged from theage.com (26 Mar 2011) http://tinyurl.com/3nqjc4r

Teenagers with basic fatty liver disease often had no symptoms other than excess weight. Yet they were at risk of metabolic conditions such as type-

Staying fit can help Australians avoid fatty liver disease. This is doubly important for people already living with viral hepatitis. See Do you want to get healthy?, page 48. Ed.

CHI study

Charting Health Impacts

The CHI (Charting Health Impacts) study is about how hep 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 hep C.

www.chistudy.org.au

Joining the study involves taking an anonymous survey online. We then contact you in 3-6 months so you can tell us how things have changed for you. If you have ever been told that you have hep C and you want to find out more about CHI, you can check out our website at www.chistudy.org.au Let your experience count and let us know about how hep C has affected you. Hep Review

Edition 73

June 2011

my story

Meg’s story: surviving stigm

he extent of my social problem dawned on me while I was astride a Stairmaster, halfway through my daily workout. The gym was crawling with college kids, grunting, flirting, dropping weights, making plans for the weekend. I bobbed along, eavesdropping and flipping through the May 1999 issue of Cosmopolitan. Tips for a summer-ready tan. Dating advice. Something about shoes. THE NEW KILLER VIRUS YOU CAN CATCH FROM SEX. I pushed my feet against the pedals faster and faster. The gym seemed to grow quiet, and I imagined that everyone was staring at me. The headline was pink or some other ridiculous colour, and I remember pictures of a toothbrush and needles. “Each year, more and more young women are being infected with hep C, a deadly virus,” the article began. It went on to profile women who had been infected with hep C through tattoos, drug use and occupational exposure. Only at the bottom did it soften the headline, explaining that sexual transmission of hep C is actually extremely rare. I dropped the magazine in a trash can and left. It had been more than a year since I’d learned that I’d contracted hep C from a blood transfusion shortly after birth. Myriad tests had revealed that my health was pretty good, and doctors had explained that treatment options were limited, so I’d returned to my life as a student at the University of New Hampshire. Some days, I didn’t think about the virus at all. Other times, I felt like a combination time bomb and pariah. I kept my hep C status as private as I could, but it wasn’t easy. Plenty of my dorm mates knew I’d been juggling classes with doctor appointments. Rumours had started after a girl I was friendly with had hinted publicly that maybe I shouldn’t be allowed to use the showers in the women’s bathroom. She, thankfully, transferred schools a few weeks later, but the damage had been done. To complicate things even more, stories about hep C were seemingly everywhere. That year, 1999, may have been the high-water mark for media attention given to the disease. There were articles in Redbook, the Economist and more. The most mainstream pieces, the ones in magazines

28 www.hep.org.au

like Cosmo, suffered from oversimplification that bordered on inaccuracy. Many writers confused hep C virus (HCV) with HIV/AIDS and sacrificed information about it and its transmission in favour of a few tear-jerking profiles of the afflicted. There were snippets in the news about hearings on Capitol Hill and summits where health care leaders lobbied unsuccessfully for more research money and lasting public health campaigns. I kept waiting for a pivotal moment, the day when someone, preferably someone famous, would declare a war against hep C, and the government would devote all sorts of time and money to finding a cure. But that day never came. Instead, I lived in fear that the next rumour would land me on the wrong end of a paranoid mob. I’d watched those made-for-TV movies, the ones that depict little kids with AIDS getting expelled. I’d seen Philadelphia. At times, my anxiety was so bad I’d stay awake all night and sleep through my classes the next day. When one professor, who was on the verge of failing me, asked if anything was wrong, I was terrified to tell the truth. I made up something about a noisy roommate, passed in some extra credit and emerged with a D. In the dining halls, I stocked up on foods I’d read were good for my liver – beets, leafy greens, eggs – and I went to the gym a lot, in part to blunt the anxiety but also because I feared that I’d someday be too sick to exercise at all. For months, I successfully avoided any situations where I’d feel morally obligated to disclose my infection, but accidents happen, especially to someone as physically active as me. Before I discovered the student newspaper, I spent most of my free time racing sailboats. New Hampshire University has an active sailing team that practices on a lake near campus. The fall of my sophomore year, the team got a new fleet of boats. We spent at least a week unloading the hulls and assembling the rigs. One cold, wet and windy day, we launched the boats for the first time. I’d barely made it off the dock before a poorly fastened screw left a deep, jagged cut on my right index finger. Blood went everywhere, soaking my yellow life jacket and splattering the gunwale.

my story

Image via Google Images

“Don’t get near me,” I yelled at my teammates as I dragged the boat out of the water, rinsed off the hull and ran for a first aid kit. In the boathouse a few minutes later, I bandaged my finger and babbled to the coach and the other sailors. There’s a virus in my blood, I explained, and they really shouldn’t be around me right then. “Whatever it is, Meg, I don’t think it jumps through the air,” one of them said, reaching for latex gloves and tossing me another wad of gauze. A few teammates drove me to the hospital, and an hour later, I was sitting on an exam table, shivering in my wet clothes. A nurse took my medical history, age, weight, allergies and other conditions. “I, ah, have hep C,” I said. She gasped, scurried backward out of the room and conducted a hurried, hushed conversation with some people wearing scrubs. A few minutes later, someone else came in, apologised and used a little skin glue to close the wound. Maybe it was the blood loss, but on the car ride back to campus, I actually found myself laughing about the stupid nurse. The teammates who helped me that day became my greatest advocates. One went with me on various pilgrimages to doctors’ offices. Another successfully lobbied the student clinic to take down posters featuring outdated and misleading information about hepatitis. But they couldn’t protect me from what happened a few days before my 22nd birthday. Dating is already tough when you’re as socially awkward as I was in those days. I wore oversized glasses, my hair never seemed to sit right and flannel was my fabric of choice.

Add a little-known, chronic disease to the mix and things got nearly impossible. Somehow, I’d managed to land myself a boyfriend. And I loved him; really, really loved him. We had a million friends in common and had known each other for years. When he finally kissed me one early spring night, it was like my world suddenly made sense. I couldn’t imagine life without him. He knew about the letter from the Red Cross, the trips to the doctors, the tiny scar on my right side from the liver biopsy. During the summer of 2000, while he visited me up north, where I was teaching sailing, he expressed some concern about catching hep C. I told him to talk to an expert and offered to bring him with me to see my doctor. He did talk to a professional, but at his family physician’s office. The staff made him take a blood test. Then they made him wait for days. The results, of course, came back negative, but he’d left his doctor’s office with the impression that he could contract hep C from kissing me. And that, he told me over the phone, was a risk he wasn’t willing to take. I don’t remember exactly what he said or what I did next. I know I stared at the tree branches and the old broken down boat outside my window and cried. •

Meg Heckman, USA Meg Heckman is a staff writer with the Concord Monitor newspaper, New Hampshire, USA. Her story is abridged from http://tinyurl.com/3duf5wg Also see Edition 72, page 28.

Hep Review

Edition 73

June 2011

feature

FIRE and Mongolian hepati Introducing a novel project which targets at-risk health care workers to help prevent the spread of hepatitis in the health care facilities of Mongolia.

hen Meredith Potts, director of Flagstaff International Relief Effort (FIRE), returned to the US from a recent humanitarian visit to Mongolia, she received wonderful news: her organisation had received a grant for A$19,900 to help prevent the spread of hepatitis in Mongolia. The homegrown FIRE organisation was established in 1999 by David Edwards and is a community-based, well-respected organisation that works to help those in need in Mongolia. While on photographic assignment in Mongolia, Edwards had seen great need for many services that were lacking in that country, including the sorry state of orphans there. Thus was born the Mongolian Orphans Association, which was renamed FIRE in 2000. Health workers at risk The grant to help fight hepatitis was engineered by Dharmesh Vora of Vora Financial Group in Flagstaff, through the Million Dollar Round Table (MDRT) Foundation, a premier association for financial professionals to which he belongs. “At the annual meeting, I said I’d love to see a Flagstaff organisation get it, and it did,” Vora said. “I’m so excited they picked FIRE.” Vora has been serving the financial needs of Flagstaff for more than 20 years and is a life member of the Million Dollar Round Table and a Top of the Table for the past six years. The Million Dollar Round Table Foundation is the philanthropic arm of the Million Dollar Round Table. The money will be used by FIRE in its Health Safety Training Program, which targets at-risk health care workers to help prevent the spread of hepatitis in the health care facilities of Mongolia. “Health care facilities are the second leading form of transmission for hepatitis in Mongolia,” Potts said.

30 www.hep.org.au

Harsh climate, conditions Familiarity with some of the basic facts about Mongolia makes it possible to better understand the scope of what amounts to a hepatitis epidemic there. According to FIRE literature, Mongolia is a landlocked country nestled between northern China and Russia. It has a population of three million people, with approximately one million of those living in the capital city of Ulaanbaatar. It has the lowest population density in the world and an estimated 30% of the population maintains a traditional nomadic lifestyle, spreading themselves over the 1.62 million square kilometres of land within its boundaries. The population density in some parts of Mongolia is as low as 0.5 persons per square kilometre, such as in the south near the Gobi Desert, which often makes access to health care difficult. Additionally, harsh winter conditions exist where temperatures can reach minus-50-degrees C for days at a time. Impact on global problem “I think it’s incredible that a community such as Flagstaff is having such an impact on such a global problem,” Potts said about the grant. Citing FIRE sources, she said Mongolia has amongst the highest rates of heps B and C in the world, with studies showing up to 15% of the population are infected with hep B or hep C. Multiple studies conducted in Mongolia from 1992-2007 also have shown that more than 50% of health care workers are coinfected with both heps B and C; these figures are unacceptably high and demand similar action for control. Most developed countries have been successful in reducing hep B rates below 10% in health care workers through aggressive vaccination campaigns, safety and health education, as well as monitoring and reporting strategies.

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itis

Image by Chris Devers, via flickr.com

Potts said that hep C may first have been introduced to Mongolia during the mass vaccination of small pox in the 1930s. Subsequent transmission has come from reuse of contaminated or inadequately sterilised syringes and needles during the Soviet era, transfusion of blood products without screening (especially in emergency situations), poor handling of medical waste and poor health and safety practices, including frequent needle sticks injuries, parental exposures in healthcare settings and exposure by household contact. How FIRE has helped To date, FIRE has also distributed 47,000 safety boxes, more commonly known as “sharps containers”, to more than 67 health care facilities throughout three provinces. That’s enough for a two-year supply for every hospital and health care clinic in these three provinces. FIRE also provides important training to health care workers, waste handlers and inspection agents about the proper use of “safety boxes” and safe disposal of sharps waste nationwide.

The objective is to substantially reduce the number of accidental needle stick injuries and lacerations with contaminated needles or other medical sharps waste. The MDRT grant will support FIRE’s Health Safety and Medical Waste Management Training Program. In partnership with several national and international organisations focused on improving the health care system in Mongolia, including the World Health Organization, Asian Development Bank and Millennium Challenge Account, FIRE is developing and expects to implement a comprehensive medical waste management training program inclusive of health and safety best practices, infection control and patient safety that will be disseminated nationwide throughout all three health care levels of Mongolia as well as the general public and policy makers. For more information about FIRE, visit www. fireprojects.org • Abridged from azdailysun.com (27 Mar 2011) http://tinyurl.com/478a6g9

Hep Review

Edition 73

June 2011

Vein Care

By the time â&#x20AC;&#x2DC;new veinsâ&#x20AC;&#x2122; start appearing, vein damage is usually quite bad - the lack of veins means that blood is being pumped into the arm or leg faster than the veins can carry it away. This makes the hands, feet or whole limb swollen, puffy, cold and blue. This is irreversible. It is a sign that injecting has caused serious, long-term damage.

Long-term consequences of collapsed veins l

Collapsing veins mean that the return blood flow is reduced. Blood flow is essential to healing without enough blood flow, injection sites and cuts become more prone to sores, infections and boils.

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

32 www.hep.org.au

If the collapsed veins are in the leg or groin, small scratches and knocks to the feet and legs can’t heal and can form ulcers. These are incredibly painful sores that take months or years to heal

Edition 73

June 2011

The Hep Review harm reduction poster, June 2011 (#28). 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

If you experience any of these things, seek medical help early on - either from your GP or your local accident and emergency department.

‡ Infections that don’t get better ‡ Areas of skin dying ‡ Ulcers ‡ Gangrene or ‡ Rings you can’t get off swollen fingers can get really serious.

Problems such as:

Sometimes blood flow is so poor that areas of skin start to die, gangrene sets in and the infected bits have to be removed by surgery.

Hep Review

feature Preventing hep C transmission in Australian correctional settings Prison inmates are entitled to a needs-based standard of health care, equivalent to that enjoyed by the community as a whole, a new milestone report proposes.

ep C and prisons are inextricably linked. People who are more likely than others in the community to have been exposed to hep C enter prisons where, in Australia, there is no regulated needle and syringe distribution. This high prevalence and resulting high incidence of hep C within correctional settings provides challenges to controlling hep C within the community as a whole. The Regulating Hepatitis C: Rights and Duties: Preventing Hepatitis C Transmission in Australian Adult Correctional Settings report is an outcome of research funded by the Australian Health Ministers Advisory Council (AHMAC) to identify the regulatory barriers to reducing the transmission of hep C within Australian adult correctional settings. The report audited the many regulations governing the environment in which hep C prevention interventions are implemented within adult correctional settings. The breadth of such regulation is vast and includes specific primary (Acts) and secondary (Regulations) legislation and internal guidelines. These guidelines include policy, operating procedures, standing orders, standards, manuals, instructions and rules. While the names, details and stated aims of these legislative arrangements differ among jurisdictions, the cultural imperative is essentially similar: the enforcement of security. Within a correctional framework, providing health services appears to be treated as an optional, rather than essential, duty of care.

34 www.hep.org.au

While the regulated distribution of needles and syringes is the primary form of hep C prevention in the community, unregulated and hazardous needle and syringe distribution occurs in correctional settings. In cases where hep C prevention programs have been introduced in correctional settings, they have often been implemented as a result of unexpected opportunities and individual interpretation of legislation, rather than as a result of good public health practice. The Regulating Hepatitis C: Rights and Duties report proposes a regulatory framework in which health interventions, including hep C prevention initiatives, can be embedded within a correctional environment. The framework uses a human rights approach which assumes that the loss of liberty and participation in the broader community should constitute the extent of punishment, and that inmates have the same human rights available to them as do other members of the community, including the right to health. Effectively implementing a human rights framework in correctional settings acknowledges that inmates are entitled to a needs-based standard of health care, equivalent to that enjoyed by the community as a whole. â&#x20AC;˘ To download the report, go to http://tinyurl. com/3rfqgut

Former health minister to assess needle program in jail

feature

The Public Health Association is to explore barriers to implementing a needle syringe program in the ACT prison and how any barriers could be overcome.

ormer Australian Capital Territory health minister Michael Moore will lead another report into a controversial needle exchange program at the territory’s jail. The announcement was made as part of the ACT Government’s interim response to the Burnet Report into the Alexander Maconochie Centre, which was tabled yesterday in the Legislative Assembly. Mr Moore, who is the chief executive of the Public Health Association of Australia and served as health minister from 1998 to 2001 under a Liberal minority government, has been commissioned to investigate models for a needle syringe program and how one could be implemented in the prison.

The Government had not yet agreed to a needle syringe program and simply wanted to know if one could work, she said. Mr Moore said he would explore ways of protecting the health and safety of inmates and prison officers. “We will start with a literature review and look at what other people have achieved, and then make sure we hear the opinions of all the people involved,” he said. “It’s a challenging task.” The Liberal Party’s corrections spokesman Jeremy Hanson slammed the additional report into a needle exchange program at the prison, saying it was a waste of time and money.

Minister for Health, Katy Gallagher, said Mr Moore would explore barriers to implementing a needle syringe program and how they could be overcome.

“Katy Gallagher needs to be focused on running the prison and stop with this ideological obsession with a needle syringe program which is bad policy.”

“He knows the landscape and the language around here so he’ll be respected and taken seriously,” she said.

The Burnet Report into drug policies at the prison made 69 recommendations. In its interim response to the report, the Government agreed to 10 recommendations, including an in-principle agreement to conduct more consistent searches and urine analysis, and refer prisoners with positive urine analysis to case managers. Thirty-one recommendations made in the Burnet Report were noted including the option of introducing a professional tattooing and piercing program at the jail. The Government said such a program could facilitate a gang culture. Ms Gallagher dismissed statements made in the Burnet Report about informants feeling “that prisoners experienced undue influence from health staff to commence methadone”. She said 91% of surveyed inmates reported a lifetime use of illicit drugs, with two-thirds of this group having a heroin dependence.

Imag

e by

Kevin

, via

flickr.

com

• Abridged from canberratimes.com (8 April 2011) http://tinyurl.com/3gsdhv6

Hep Review

Edition 73

June 2011

feature

Homeless and alone on our streets Hundreds of homeless people have a simple wish: they hope the streets are a little safer. Mitchell Toy reports on the forgotten people who are forced to make the streets their home.

efore drugs got the better of him, Alan was living the great Australian dream.

“I used to have a house, I used to have 40 grand in the bank. I remember what it’s like to have a good life.” Now Alan, 36, has nothing. Since the start of winter he has slept under the rail overpass near the intersection of William and Flinders streets with a group of forgotten, homeless people, some of the 200 who sleep on Melbourne’s CBD streets every night. As Melburnians go about their shopping, Alan contemplates his few possessions that include a mattress and a blanket. These are near two of his companions, who are snoozing, glad the rain has stopped for the time being. Most of the members of Alan’s mismatched camping group, perched on a raised base of a bridge pylon among filthy garments and empty bottles, are Aboriginal. Fights are frequent, drunkenness is constant and injuries are part of life on the street. “I’ve seen people get attacked while they sleep. I’ve seen people get stabbed. Just the other week one guy got his head kicked in while he was sleeping,” Alan recalled. “Here you have to rest with one eye open. You’ll have things stolen and people will try to attack you. There’ll be a punch-up tonight, there’ll be another one tomorrow night.” Alan, originally an arborist from Ballarat, remembers studying in Sydney and living on the northern beaches. It was the good life he forfeited when he started using drugs and soon found himself without work and without a home. “I’ve gone through a methadone program to stop using, but my friends and family still think I’m an

36 www.hep.org.au

addict,” he says. “I lost my best friend to drugs. I found him dead. “Wealthy people and politicians don’t understand how hard it is to live like this. I’d like to see a politician come and spend two nights down here. There’s no way they’d cope.” On a normal day, Alan wanders the streets of the CBD, asking people for money and seeing what food he can find. Sometimes stealing is the only option. He faces charges for begging and shoplifting, but says it is better than starving. The worst part is thinking about his friends and family interstate and what they’d think if they saw the way he was living. “I have the best mum, but she’s not here to help because she thinks I’m still using,” he says. Isolation, loneliness and a lack of understanding are sometimes as bad as starvation and lack of shelter, Jane Barnes of the Salvation Army says. The Salvation Army offers 300 crisis beds for the homeless every night in Melbourne. “Mental illness is a big contributor to homelessness, but with many people it is unclear whether they were mentally unwell before they were homeless, or if living that way has contributed to the illness,” she said. “It is believed more than half of homeless people have a serious medical condition, which is also very alarming.” It is estimated that there are more than 25,000 homeless people in Victoria, including those living in rooming houses and emergency accommodation, though the exact number is not known. More than 2,200 are believed to be living on the street or under improvised shelters like the William Street overpass. More men than women are homeless in Victoria, but in the 12 to 18 age group, females outnumber

feature

Image by Chris Devers, via flickr.com

males. Alarmingly, 30% of Melbourne’s homeless are believed to have hep C, according to a recent on-street survey by the Salvation Army. “We are very concerned about the rise of hep C, and we’re concerned that 40% of the homeless people we surveyed have been to a hospital emergency unit more than three times in the past 12 months,” Ms Barnes said. “Many have a mental illness, about 70% have a substance-abuse problem and more than half have both. It is quite a reminder of the harshness of real street homelessness. “One of the biggest problems we are seeing at the moment is generational homelessness. Kids are born into rooming houses or periodic homelessness and that cycle is then very hard to break.” The Botanic Gardens, the north bank of the Yarra and pockets of Richmond were recently identified as areas where homeless people congregate. Nine were found living in the Parliamentary Gardens near Spring St, including women. Others

choose to live alone away from groups, sometimes having only a blanket in their possession and camping in supermarket car parks, under bridges or in parks. The Salvation Army continues to offer short and long-term services to help street people find accommodation and ongoing medical help. For Alan, apart from the winter cold and persistent rain, the biggest annoyance is that nobody seems to care. “Some people are out here because they want to be; that’s the truth. But I’m not; I want a job and I want a house.” And, he says, helping others to avoid drugs and homelessness is his dream for the future. “I can see myself talking to young people about my life and about the decisions I’ve made, to make sure they don’t go down the same path,” he says. “But at the moment there’s not a lot to live for.” • Abridged from heraldsun.com (19/12/2010) http://tinyurl.com/3ox6wuj

Hep Review

Edition 73

June 2011

feature

All U need 2 do is as

Don’t cuff yours

NSW Hepatitis Helpline and Prisons Hepatitis Helpline Welcome to another edition of All U Need To Do Is Ask. In this issue we are looking at the Hepatitis Helpline and, of course, the Prisons Hepatitis Helpline.

then using the Helpline to get information and resources and the rest is history. I am still a member of HNSW and also a member of the Board of Governance, specifically, the board secretary. The beginning, however, was through the Helpline. In May 1992 the Australian Hepatitis C Support Group set up the Australia-wide Telephone Information and Support Service. In July 1994 the Australian Hepatitis C Support Group changed its name to the Hepatitis C Council of NSW. At or just before this time the individual state and territory Councils had agreed to seek statespecific funding from their respective health departments. At this time the previously NSWbased, Australia-wide service was changed to become a state-by-state operated service. The Hepatitis C Council of NSW was already operating the NSW-wide Telephone Information and Support Service. Volunteers worked from their homes at set hours, which were often – and not surprisingly – not respected by callers.

This magazine, Hep Review, was my introduction to Hepatitis NSW and to the Hepatitis Helpline. It began with my reading the magazine and then undertaking Prison Peer Support Training and

Image via Google Images

38 www.hep.org.au

Callers accessed the volunteer workers by ringing the centralised 0800 803 990 free call number, and listening to a very long recorded message giving the numbers of volunteer workers in their local areas, and the days and times they should phone them. In 1996 the Hepatitis C Council of NSW employed the first dedicated staff member to coordinate the infoline, bringing it in-house and centralising and professionalising the service. Volunteers were still recruited, trained and engaged to staff the lines, but for the first time, Image, top, provided for All you need 2 do is ask by Long Bay MSPC inmate.

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self they were able to be supported and supervised in their work by the infoline project worker. All along, the volunteer workers were called “information and support” workers rather than “counsellors” because, although they employed counselling skills within their work, they were not trained counsellors In 1996 the name of the Telephone Information and Support Service was changed to the NSW Hep C Helpline. In 1996 the NSW Inmates Health Survey reported that 39% of inmates were hep C antibody positive. More recent research of 22 prisons in NSW found that 47% of inmates tested were hep C positive. Other research indicates the prevalence to be approximately 33% among male inmates and approximately 66% among women prisoners. The prevalence of hep C among inmates who are injecting drug users is approximately 80%. Recognising the need for information and health promotion messages on hep C to be provided by a variety of means, the Hepatitis C Council of NSW, in partnership with the Department of Corrective Services and NSW Corrections Health Service, developed the Prisons Hep C Helpline. In 1999 a second full-time project officer was employed to work alongside the Helpline Coordinator. There was a real need for a phone service that would not be a financial burden upon the person making the call. The Prisons Hep C Helpline became part of the prison phone system with a free call. It is now widely used among inmates and the call numbers are encouraging. I first came in contact with the Helpline when I was at Lithgow many years ago during my prison peer support training when I needed resources. The Helpline staff were eager to help and a week later my program leader called me down to the education block where two boxes of resources had arrived. The governor was there and asked

“Did you arrange for this to come to the jail?” I replied “Actually, yes, I did. It’s part of my peer support – I’m going to give it out to all the units.” I was not ever quizzed again after that time and I never had any more problems. The Helpline was only a call away and always assisted me. Anyone at any centre can call the Helpline and will receive support, updated information on treatment and services as well as understanding and advocacy to say the least. What have you got to lose? If you are just wanting information or just want to talk about hep C phone the Helpline. The staff are great and are always willing to listen and help out. The Helpline isn’t just a prison service but provides high quality health care and community support for all those across NSW who are affected by viral hepatitis, particularly hep C. The service takes between 3,000 and 4,000 calls each year, ranging from a few minutes to more than an hour in length. Most calls are requests for information relating to hep C, its possible effects on health, and current treatment availability. Calls involving support with lifestyle issues and the social and emotional aspects of living with a chronic condition are the second most frequent type of call. Calls involving referral to other services also form a large part of service provision, and the service has over 1,000 healthcare workers and agencies on the database to refer people to if required. If you have concerns or if you have a loved one incarcerated and would like to know more about hepatitis, why wait? Call now, it’s a free call. Until next issue remember “don’t cuff yourself, all u need to do is ask”. Remember I will answer letters so don’t be shy. Thanks to the person at Wellington who wrote in; great card, thanks so much. Bobby B Hep Review

Edition 73

June 2011

my story

Dave’s story: Lucky B

ack in 2008 I agreed to be part of a study into hep C that was running in NSW jails; one that looked at new hep C transmissions and why some people cleared their hep C naturally. I think it was called the HITS Study. I was hep C negative when I started with the study but contracted the virus in January 2010. The only symptom that I have noticed is that I have felt a little bit tired. I have stopped doing as much exercising as I would usually do and tend to kick back more and watch TV or read a book. Consequently, I started gaining a few extra kilos. And since I quit smoking last month, I have really been packing it on. But in the long run, I would much rather be a bit bigger instead of dying from cancer or emphysema. I have been thinking a lot about having treatment for my hep C. I have met a few lads who have done the combination treatment and I got some first-hand information about the severity of the side effects. Although they all had similar pains, they also said that they didn’t regret it as it allowed them to live a normal life in the long run. Because I am genotype 1, the boys reckoned that I would have to do the whole year treatment. Even though I knew what to expect, I made up my mind to do whatever I could to get rid of the hep C, asap. I spoke to a nurse about my intention to begin the interferon program straight away. She said that a certain percentage of people clear hep C naturally by their immune system within the first nine months. She also said you can live a normal life with hep C as long as you don’t put extra strain on your liver by abusing alcohol and other drugs. In any case, I still had to wait the nine months before commencing treatment. So I started taking vitamins. I had to buy them off the jail “buy up” but it was worth it if you ask me. I have aspirations to become a chef when I get released. I get a natural high whenever I am cooking in a restaurant with a good group of cooks. I am always trying to perfect my dishes, tweaking all those little things to get the flavours

40 www.hep.org.au

just right. I have always loved working with food. Using the concept of fusion to create original taste sensations has been how I have made a living for the last decade and I am not about to give that away. But at the same time, an exinmate with hep C isn’t going to find it easy to get a good job. I have always had a passion for cooking and kitchens but my guess is that it’s a bit complicated if you have hep C.* Last week, I had my nine-month test done. This morning I was called to the clinic to discuss my results and possibly begin a year of pain. I felt like a condemned man, slowly walking up to the gallows. The only good thing I could think was if I got on the interferon combination therapy, I would lose a lot of weight. I didn’t even consider that I would be in the clear. The nurse sat me down opposite the desk. I could tell nothing from her expression. “She’s obviously done this before,” I recall thinking to myself. She quickly confirmed my ID and pulled a single sheet of paper from my file. She spun it around and pointed to an underlined part; “It shows here that your body has cleared the hep C from your blood stream!” She looked me straight in the eyes for a moment, and then smiled, “you are one of the lucky ones!” I breathed a sigh of relief, followed by a quick gasp of air. I was actually holding my breath! Now I know where that phrase comes from! It was the best thing that happened to me all year! I was overjoyed. I had dodged the bullet! I soon realised that my joy was a bit premature. Apparently, it was only one of three negative results needed to confirm the virus was beaten, so I extended my arm for another sample. I was told that as long as I refrain from putting myself at risk, the chance of re-infection was very slim. Since I first found out I had contracted hep C, I have been exceptionally careful not to pass it on. I have let every cell mate know not to use my toiletries by accident and I have ceased all my “habits” that got me into this position in the first place.

my story

so far All my life I have insisted on learning things the hard way. But after a few years of jail and my brush with hepatitis, I sure have got my wake-up call! When I am released next year, I will probably take a few things to remind me not to come back. But a dodgy liver is not a souvenir I am taking with me! Dave, NSW

Image by Trishhhh via flickr.com

* N.B. Having hep C should cause no problems with working in the food or hospitality industry. The Public Health Act does not obligate people working in kitchens, cafes, hotels or shops to inform employers, fellow workers or customers of their hep C status. All workplaces should have a first-aid kit in case anyone has cuts or other minor injuries.

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June 2011

feature

Hep C treatment: EPO Dealing with hep C treatment side effects can be difficult for many people. Adrian Rigg reports on a possibly important tool that may potentially help people stick to their treatment regime.

he oxygen we breathe is carried from the lungs around the body by the haemoglobins in red blood cells. When oxygen in the blood is low, kidney cells produce Erythropoietin (EPO) which stimulates bone marrow to produce more red blood cells. The extra red blood cells are able to carry more oxygen through the body; this may also increase metabolism and the process of healing in the body. EPO is part of an important process of keeping red blood cells at the right level. Too many red blood cells may cause thickening of the blood, increasing the possibility of clots and thrombosis. Too few will cause it to thin, meaning it carries less oxygen and the heart has to work harder, especially during exercise. EPO can be measured in a blood test; this test is only done in specific circumstances, and results will need to be interpreted in relation to the person’s particular situation and health. Too much EPO in the blood can be evidence of kidney problems, such as a tumour; too little EPO can indicate anaemia. Anaemia occurs when there are too few red blood cells; oxygen cannot be carried effectively throughout the body, causing constant tiredness and fatigue. It can also make people feel dizzy and short of breath, and cause problems with concentration. Medical uses of EPO EPO can be produced for medical use. Synthetic EPO is most commonly used for treatment of anaemia in people with kidney failure, and for people undergoing treatment for cancer, such as chemotherapy; it is very similar to EPO produced naturally by the body. EPO is only used for anaemia that was brought on by another medication; people with anaemia from other causes, such as iron deficiency, would be treated for the cause of their anaemia.

EPO in hep C treatment Because EPO helps reduce anaemia, it can be useful for people undergoing hep C treatment. Combination therapy can often cause anaemia – ribavirin can destroy red blood cells and interferon can affect bone marrow. When this occurs, doses of ribavirin are often reduced to avoid anaemia, making the treatment less effective. Giving people synthetic EPO can help lessen anaemia without lowering the level of ribavirin. Professor Jacob George, of Gastroenterology and Hepatic Medicine, Westmead Hospital, says that EPO therapy can be most effective in the early stages of hep C treatment. “It may be useful for patients who are symptomatic from anaemia, especially if this occurs early during treatment, as it is important to have the highest doses of ribavirin on board at that time,” says Professor George. People having hep C treatment are closely monitored by their health professionals, so any changes in red blood cell levels would be noticed, and could be dealt with. Ken Abrahams experienced the effects of anaemia during hep C treatment which, on top of other side effects, made coping with treatment difficult. “Because of my low red blood cell count, I was completely out of breath after simple things such as having a shower, and even tying my shoelaces was very difficult,” says Ken. He was referred to a haemotologist because his white and red blood cell levels were abnormal. He was prescribed darbepoetin, a synthetic form of EPO, administered in two injections a week. This was a real turning point for Ken. “Without the darbepoetin, I doubt whether I would have been able to finish my treatment and had the chance to ultimately clear hep C,” he says. New drugs, such as telaprivir and boceprivir, may soon be available in Australia. Overseas trials have shown that, in conjunction with interferon

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or no EPO? and ribavirin, they can greatly improve treatment outcomes; however, they have also been found to increase instances of anaemia in patients. This makes EPO more important as part of treatment, but it may still be some time before it is available on S100. Patient outcomes Sue Mason, Hepatitis C Nurse Consultant at Royal Prince Alfred Hospital, says that EPO can help stabilise, or even improve haemoglobin levels. Sue and her colleagues conducted a study of 13 patients who were given synthetic EPO (specifically, NeoRecormon) while undergoing hep C treatment1. The objective was to determine if administering EPO would allow target doses of ribavirin to be maintained throughout treatment, thereby allowing greater treatment success. They found that 53% of patients were able to take the optimal doses of ribavirin â&#x20AC;&#x201C; most likely resulting in improved hep C clearance rates. Although EPO treatment is expensive, the potential cost savings are significant; successful first-time treatment makes secondary treatments unnecessary, and future transplants can be avoided. While there was no corresponding study of quality of life, it is likely that the reason these people were able to cope better with ribavirin was because they felt better; so their lifestyle was improved. Barriers to EPO use EPO treatment is costly, and it is not available on S100 to people with ribavirin-induced anaemia. Effectively this means that, aside from compassionate programs or clinical trials, it is not available to most people undergoing hep C treatment.

Image by Murtada, via flickr.com

Some clinics, particularly ones that also do liver transplant work, have some access for patients, says Professor Greg Dore, of the Kirby Institute, University of New South Wales. â&#x20AC;&#x153;At St Vincentâ&#x20AC;&#x2122;s there is a small budget each year from the drug committee that will enable 1-3

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feature patients to receive EPO, depending on how long they need it for,” says Professor Dore.

medical practitioners are finding other ways to deal with anaemia in patients.

There are potential side effects from receiving EPO treatment, such as high blood pressure, headaches, skin irritations, and the often-mentioned “flu-like symptoms”. In 2007 the United States Food and Drug Administration issued a “black box warning” (an insert with a medication issued when medical studies have indicated significant risk of serious side effects) for some EPO drugs, which related to tumour growth, heart problems, strokes and blood clots. This required the manufacturer to create a risk-management program for prescription of these drugs, and a Medication Guide for patients. As EPO treatment has mostly been used for cancer-related anaemia, these warnings relate to that, but should also be considered in relation to hep C treatment. Since EPO access for hep C patients is well controlled, medical professionals would be very aware of their patient’s situation and any potential side effects.

Jacob George says that making people aware of the likelihood of some degree of anaemia before they begin hep C treatment helps prepare them for management of symptoms.

Ken Abrahams says that he didn’t experience any adverse reactions to the synthetic EPO darbepoetin. “I don’t believe that I experienced any side effects; however, when ‘intoxicated’ by interferon, ribavirin, neupogen and other medications it is difficult to differentiate side effects,” he says. As always, it is important for health care teams to work together to provide best outcomes for patients. Ken benefitted from the good working relationship between his health professionals. “I was very grateful to be prescribed these rescue medications during my treatment, and I applaud the good communication between liver clinics and haematology departments,” he says. Not every experience of anaemia would be as severe as Ken’s, just as people’s experiences of other side effects are different. Considering the expense, EPO treatment would only be costeffective for people who would otherwise be unable to complete hep C treatment. Advocacy for EPO Currently there is very little advocacy around the issue of access to EPO. This may be partly because few people are aware of EPO as a treatment for ribavirin-related anaemia, and also because

44 www.hep.org.au

“We don’t use it much because of access issues, and also we are able to manage patients better, for example, letting them know why they are tired and letting them know this is expected,” says Professor George. Greg Dore agrees with this, saying that there are few circumstances where he feels EPO treatment is necessary. “Although it does reduce anaemia-related fatigue, there is still no randomised controlled trial evidence that EPO increases treatment efficacy,” says Professor Dore. Continuing improvements Treatments improve as medical knowledge expands; improvements to quality of life are as important as improvements to treatment outcomes, and they often go hand in hand. Ken Abrahams feels that there should be greater access to EPO for people having hep C treatment. “I understand the enormous expense involved with EPO medications and that some hospital clinics do not have the budgets to allow patients access to additional treatments for side effects; however, if a person is willing to commit to the long and difficult process to cure their hep C, they should have all the support possible,” he says. If EPO is proven to be an effective part of hep C treatment, access may become easier. Expensive treatments can only be considered worthwhile if they are proven to be effective and safe, and advocated by patients and health professionals. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com S Mason, G McCaughan, F Newton, S Shiels, S Strasser, F Tenison. Impact of erythropoietin on ribavirin dosing and outcomes in patients undergoing hepatitis C treatment. Conference poster, 6th Australasian Viral Hepatitis Conference, Brisbane, July 2008.

Image by Murtada, via flickr.com

feature

HELLO HEPATITIS HELPLINE Hi. I was told 10 years ago that I have hep C, but it’s never made me sick and I’ve never really bothered seeing any doctors about it. I was talking to a friend of mine about treatment, so I thought I’d look into it with a specialist and see if I could be cured. Before she referred me to the specialist, my new doctor told me I don’t have hep C. She was really certain about it. Why would that happen? You’re not the only person this has happened to; the situation you’ve described is not common, but it happens more than you might expect. To understand what’s happened here, it will be helpful to go through what happens when a person first gets hep C. After a person contracts hep C, their body responds to it as something foreign, and tries to remove it. Out of 100 people who get the virus, around 25 will clear it naturally in the first six months. That means that their body removes the virus and they no longer have hep C. You can’t control that immune response, apart from trying to stay healthy and avoid alcohol. Who clears it naturally is really luck of the draw. That process of a person’s body fighting the virus creates antibodies. Even if you don’t clear hep C from your body through that process, the antibodies will still be there. We have antibodies to all sorts of illnesses, sometimes because of exposure and sometimes because of vaccination. The confusion you’ve described comes up because the first test that’s done for hep C looks for antibodies. The (cheaper) antibody test will show if you’ve ever had hep C, but doesn’t tell us if you have it at the moment or not.

If someone tests positive for hep C antibodies, it’s really important that they have a second, more expensive, test called a PCR test to look for the virus itself. A positive PCR test means that the virus is there and can be passed on. A negative PCR result means that the virus is not there. What could have happened to you is that you were diagnosed incorrectly 10 years ago (with only an antibody test). It sounds like you’ve now had a PCR test with your new GP, which showed that you don’t have the virus. Unfortunately, some doctors remain unaware of the need to use PCR tests, and will tell someone they have hep C based on a positive antibody test result. If you tested antibody positive and PCR negative, it means that you’ve had hep C, but you were one of the lucky 25% whose bodies fought the virus successfully. If you’re still worried or unsure about those results, it’s always possible to check the tests that you’ve had and ask for clarification. Even when your body has cleared the virus, it’s important to know that you can get the virus again. Having been exposed to some viruses means you have immunity, but that doesn’t happen with hep C. So despite your body having done a good job of clearing it in the past, you’ll still need to avoid blood-to-blood contact to avoid the virus. Remember too that if you want to get tested in the future (if you had another exposure risk, for example), you will always test positive for antibodies. In that case, it would be better to go straight to a PCR test to find out if the virus is present or not. • More information about testing is available through the Hepatitis Helpline.

“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.

FERRAL. INFO. SUPPORT. RE L TIA EN ID CONF

Hep Review

Edition 73

hepatitnise helpli

June 2011

my story

Glen’s story: dealing with de

’know, I’ve written a few of these things for the Review. Let’s not beat around the bush, I had a hard time on treatment, so when I write these stories they tend to include a lot of whining about how crappy I felt, which can be entertaining sometimes, but not all the time. No viral clearance either, so it’s a real drag. I don’t write or talk about it much as I don’t want to scare people off treatment. Many, many people have an easier time on treatment than I did, clear the virus, and are really healthy and happy. That’s great, only a little part of me is jealous, the rest of me is happy for them. Anyway, it’s more than three years since I finished treatment, time to get over it and move on pretty much no matter how bad it went. So why am I writing now? Because I’m pissed off with people, mainly health professionals, telling me that the side effects go away quickly, that what I think I’ve been feeling for the last few years is wrong. Jesus, it feels like I’m a complete idiot in their eyes; someone who has no knowledge of how my own health is going, or how I’m feeling. Sure, there are some things that you may not know you have without seeing a doctor and getting tests – things like high blood pressure, diabetes or high cholesterol spring to mind. But I know whether I feel perpetually exhausted, my digestive system is shot, and I’m impotent. These are obvious symptoms, these are not subtle or vague feelings that I could be misinterpreting. Before I started treatment I felt I was reasonably prepared for the 48 weeks that I was signing up for. I felt better than I’d felt in years and had no major responsibilities. So, time to give it a go. It didn’t go well, I felt really sick the whole time and didn’t clear the virus. Bugger, but I knew all that could happen before I started. Even in Australia things don’t always work out with a happy ending, and the docs told me upfront what could go wrong and what could go right. It’s bad luck, but I can live with that. All up, I spent 72 weeks off work and even when I started work again I was only fit for part-time work. But a job offer came along and it was too good to refuse. The job was full-time and for the first six months my very understanding employer wasn’t getting value out of me, I can tell you. You know that

46 www.hep.org.au

slump after lunch when you might feel like a nap? For a year or more after treatment I felt like I was going to die each day after lunch. I want to give you some specifics about the crap that health professionals have told me. I had gum problems as a result of the treatment. I went to a dentist and told him that I’ve had lots of problems because of the treatment I’ve just come off. Does he give me advice, or sympathy? No, he gave me lessons in how to brush my teeth, and assumed I’d never learnt that skill – despite the fact I am in my mid fifties and have a reasonable set of natural teeth. Yeah, I can’t brush my teeth, good assumption to make guys. Worse, I gave a talk to a group of doctors and told them about how sick I’ve been for the two years since completing treatment. One response was that “perhaps it’s coincidence” that I’ve felt bad ever since I had treatment, and it might just be a part of the aging process. Well yes, it could be coincidence, but it could be the heavy prescription “chemo-type” drugs I took for 48 weeks. Let’s see if a highly-trained health professional can follow my logic for thinking it’s the treatment that has caused my long term “unwellness”. I was feeling well even though I was over 50. Then I started peg combo treatment and while I was on treatment I was so extremely tired I slept up to 20 hours a day. I was pretty much impotent, my digestive system was pretty well shot and my teeth were disintegrating. When I stopped taking the drugs I still felt extremely tired, had continuing gastric effects going on and, well, it was two years before the impotence went away. So my logic is: before doing the treatment I felt well, I felt very sick during the treatment, and that continued on, slowly lessening for two or more years after treatment. Or it could just be a coincidence. What do you think? I think the medical profession has a bit of a blind eye. The month after finding out the treatment hadn’t worked was the worst; after that I just got on with doing what I can do. It’s now more than three years since I finished the treatment and at last, I feel better. I think the final turning point was my doing regular vigorous exercise. Not everyone’s cup of tea, but it worked for me. I feel normal, I can pretty much do a normal day’s work (maybe that is aging), my gums don’t bleed anymore and the impotence

my story

eniers

thing is behind me (and no, there’s no double entendre in that). Life is interesting and good again. But I’m still pissed off with health professionals who didn’t believe me when I said that the treatment gave me years of side effects. It still eludes me; why did they do that? Glen, NSW N.B. the overwhelming majority of people who complete hep C combination treatment do not experience such ongoing 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

Image by aturkus, via flickr.com

Hep Review

Edition 73

June 2011

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Do you want to get healthy? See inside to find out how.

free hepatitis service is now available via an outpatient medical clinic at Bathurst Base Hospital.

All people with hep C who would like assessment, treatment and follow up, will need a referral from their local GP to attend the clinic which is currently situated across the road from the hospital in the division of GP rooms. By September we will be in our new rooms in the renovated historic building on the Bathurst Base hospital campus.

www.gethealthynsw.com.au

Hep C treatment is more effective if you’re in better shape: not carrying too much extra weight, and not tending towards type-2 diabetes. With better treatment options on the horizon, perhaps now is a good time to ask yourself, Do I want to get healthy? If the answer is yes, give the gethealthy campaign a call. Ed. 48 www.hep.org.au

The service has two visiting gastroenterologists; Dr McGarity and Dr Mackender who will assess patients for suitability of treatment, and a nurse Katherine McQuillan to support patients throughout their treatment course. Lifestyle education, monitoring of side effects and referrals to allied health service will be available. This is a great opportunity to finally treat your hep C with the support of our team and confidential service. Contact your GP for a referral today. • If you would like more information about treatment and our service, contact Katherine McQuillan on 02 6330 5866 or 0407 523 838

membership matters IN YOUR JUNE EDITION OF MEMBER NEWS, READ ABOUT: • Membership renewals: As we have already advised, our membership year now begins on 1 July, with the benefit of members able to choose to pay for up to three years at once, while zero fee renewals are now only required once every three years. Within the next few weeks Professional and Organisational members who have not already renewed, will receive their renewal invoices. • Prizes for our early bird members will be drawn from the hat in July. This year, being the start of our new membership year, the prizes will be rather special. Let’s have your membership application or renewal before 1 July, thanks. • There are a few copies of the free Australian Better Health Initiative: How do you measure up? still available to current members who wish to Kickstart your healthy life. Members may call our admin office (9332 1853) for a copy or see further details in Member News. • Hepatitis NSW sponsored scholarships to Brisbane conference on offer to currently financial members in our zero fee, concessional and waged membership categories living in NSW: Your copy of Member News Ed 73 will have details of how to apply for one of two scholarships that HNSW is pleased to offer. The Hepatitis Health Promotion conference in Brisbane is set for 24 - 25 November 2011. Our scholarships cover registration fees, transport, accommodation and meals. • 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 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 Thursday 20 October (5:00 – 6:30). 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 tarmstrong@hep.org.au Refreshments provided!

A historical perspective – October 1996 Headlines from 15 years ago... • Does an HIV strategy equal an HCV strategy? • New research highlights the need for standardised HCV national surveillance system • Who does the hep C virus affect? • Newcastle herbal trial • Partying safely • Mosquitoes acquitted of HCV transmission • The Liver Cleansing Diet reviewed • Chippers and Pickers Outreach project • Shooting clean and avoiding hep C 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 15, October, 1996.

A keyhole to our work – continued from page 3.

The adverts recommended liver function testing for men at greater risk of liver disease as part of their annual health checks. The adverts targeted an estimated readership of 240,000 men, mostly aged 35-65. Evaluation of the campaign is almost complete and a final report is expected to be available in June 2011. Detailed information on the campaign is downloadable from http://tinyurl.com/23hzgt4 We remain aware of the need to keep up-to-date on gender differences in clinical aspects of viral hepatitis and liver disease. We also recognise the need to monitor our work effectively so that, if needs be, we can target unwanted gender imbalances, should they develop in people’s access to our programs and services. • Paul Harvey, Hepatitis NSW

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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

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It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid forks. and bloodknives tosame blood contac t wit h other people, you are not at risk . It is transmitted when So if infected blood from one hep you find out someone C, sup the port them and has person gets into don dis ’t crim inate agains bloodstream of someone t them. else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)

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Hep Review

Edition 73

June 2011

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research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need. Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. This helps develop consensus opinion on particular research topics and broadens our overall knowledge. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.

Hep treatment lowers insulin resistance

Liver disease deaths higher among diabetics

USA - Resolution of hep C genotype 1 infection after treatment with combination treatment is associated with improvement in insulin sensitivity. However, factors other than medications may be at work, researchers report in the February issue of Gastroenterology.

UK – People with diabetes are 70% more likely to die from liver disease than those without the condition, according to new research.

Dr Hari Conjeevaram of The University of Michigan, Ann Arbor, and colleagues note that the insulin resistance associated with the condition might result from liver disease, metabolic factors or hep C virus itself. Moreover, the effect of antiviral treatment on insulin sensitivity isn’t well known. They also point out that insulin resistance may affect the progression of liver disease, but it’s uncertain “whether insulin resistance is the cause or the effect of worsening liver function or fibrosis.” To investigate, the team studied data from a prospective trial of a 48-week course of combination peginterferon and ribavirin therapy in 341 patients infected with hep C genotype 1. Overall, the researchers concluded that there appears to be “a direct role for HCV in inducing a decrease in insulin sensitivity.” The finding, they add, “provides strong support for recommending therapy in patients with chronic hep C and insulin resistance or diabetes.” • Abridged from medscape.com (3 Mar 2011) http://tinyurl.com/6z5mf3d

It is already known that diabetes can increase the risk of some types of liver disease, with poor blood sugar control boosting the risk. This can lead to scarring of the liver - also known as cirrhosis - and cancer. In the study, Edinburgh researchers analysed the records of people aged 35 to 84 over a six-year period to 2007. The results showed about one in four (24%) people with diabetes died of liver cancer, compared to one in ten (9%) of non-diabetics. However, more people without diabetes died from alcoholic liver disease (63%) compared to those with diabetes (38%). “Non-alcoholic fatty liver disease has become much more common recently, particularly among people with diabetes,” said Dr Sarah Wild, of Edinburgh University. “The major risk factor for it is being overweight, which is also an important risk factor for Type 2 diabetes.” “Non-alcoholic fatty liver disease increases the risk of cirrhosis which in turn increases the risk of liver cancer. A healthy lifestyle can reduce the risk and prevention is particularly important because the options for treatment are limited,” she said. • Abridged from bbc.co (30 Mar 2011) http:// tinyurl.com/43c7aae

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research updates Unusually high cure rate recorded with new vaccine

New vaccine shows promise against hep C

Sweden – Of six patients with genotype 1 chronic hep C treated with combination treatment following participation in a clinical trial with four ChronVac-C vaccinations, five have gained SVR (viral clearance, six months post-treatment).

Denmark – University of Copenhagen scientists have succeeded in developing a vaccine, which provides future hope for medical protection from hep C virus.

“Although the number of patients is very small, we are cautiously optimistic. This encouraging data actually match these received with the coming protease inhibitor therapies. We look forward to the continued clinical development of ChronVac-C”, says Anders Vahlne, CEO of Sweden-based ChronTech Pharma AB. • Abridged from cisionwire.com (10 Mar 2011) http://tinyurl.com/5r6rdco

Vaccine to prevent liver transplant re-infection USA – Researchers at the University of Massachusetts Medical School announced the beginning of a Phase 2 clinical trial testing the ability of a human monoclonal antibody they developed to prevent hep C infection of a donor liver in transplant patients. The primary goal of this randomised, doubleblind, placebo-controlled study is to test if the monoclonal antibody, designated MBL-HCV1, prevents re-infection of patients with hep C who are undergoing liver transplantation. “We are hopeful that positive results from this study will meet an important public health need,” said Dr Donna Ambrosino, executive director of MassBiologics and a professor of pediatrics at the Massachusetts Medical School. There are currently five hospitals participating in the trial and others may join in the coming months. The first six patients enrolled have come from three of these sites. • Abridged from news-medical.net (19 Jan 2011) http://tinyurl.com/4y5yqdw

In this type of hepatitis the virus hides in liver cells and can cause cirrhosis and liver cancer. Since the virus mutates strongly, there is no traditional vaccine to protect against it. “Most cases do not present any symptoms at all and the virus becomes a chronic infection of the liver,” said Jan Pravsgaard Christensen, Associate Professor of Infection Immunology at the University. The technology works by stimulating and accelerating the immune system, and showing the body’s defence mechanisms the parts of the virus that are more conserved and do not mutate as fast and as often. “We took a dead common cold virus, an adenovirus that is completely harmless and which many of us have met in childhood,” said Christensen. “We hid the gene for one of the HCV’s internal molecules inside it. At the same time we attached a special molecule on the internal molecule so that when the cells of the mouse body tried to take a sample, they would extract a more extensive section. “The immune defences would then be presented with a larger section of the molecule concerned. You may say that the immune defences were given an entire palm print of the internal genes instead of just a single fingerprint,” he said. The immune defences of the mice saw such an extensive section of the internal molecule that even though some aspects of it changed, there were still a couple of impressions the immune defences could recognise and respond to. The finding has been published in the Journal of Immunology. • Abridged from sify.com (24 Feb 2011) http:// tinyurl.com/5w77z2b

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June 2011

research updates Factors that shape assisted injecting practices

Does anyone know where to get fits from around here?

Canada – Injecting drug users commonly seek manual assistance with drug injections, a practice known to be associated with various health-related harms. We investigated the social structural factors that shape risks related to assisted injection and the harms that may result.

Australia – Little is known about the factors that influence injecting drug user choice of outlet, and in particular why some drug users might prefer to use pharmacies. Greater understanding of the influences on this choice will contribute to more sophisticated policy and program responses for blood-borne virus prevention and for health and wellbeing programs for people who inject drugs.

Twenty semi-structured qualitative interviews were conducted with drug users enrolled in the ACCESS or Vancouver Injection Drug Users Study (VIDUS). Barriers to self-injecting included a lack of knowledge of proper injecting technique, a loss of accessible veins, and drug withdrawal. The exchange of money or drugs for assistance with injecting was common. Harms experienced by drug users requiring assistance injecting included theft of the drug, missed injections, overdose, and risk of contracting blood-borne viruses. Increased vulnerability to blood-borne virus infection within the context of intimate relationships was represented in participant narratives. Injecting drug users identified a lack of services available for those who require assistance injecting, with notable mention of restricted use of Vancouver’s supervised injection facility. This study documents numerous severe harms that arise from assisted injecting. Social structural factors that shape the risks included intimate partner relations and social conventions requiring an exchange of goods for provision of injecting assistance. Health services for drug users who need help injecting should include targeted interventions, and supervised injection facilities should attempt to accommodate individuals who require assistance with injecting. Fairbairn N, et al. Social structural factors that shape assisted injecting practices among injection drug users in Vancouver, Canada: a qualitative study. Harm Reduct J 2010. 31(7):20. • Abridged from http://tinyurl.com/3vrewu9

In-depth interviews were conducted with 15 drug users about their experiences of accessing injecting equipment from pharmacies that participated in the government sponsored pharmacy needle and syringe scheme. A range of factors influenced participants’ decisions about equipment access. The advantages of the pharmacy scheme access included convenience, relative anonymity, increased positive feelings of self-worth when accessing equipment from pharmacies where they had a good relationship with staff, less police surveillance and access to a greater range of equipment than available in publicly funded NSPs. The disadvantages of pharmacy access included the cost of equipment and complications related to methadone dosing and equipment access. Pharmacy access to injecting equipment is highly valued by drug users. The results of this study direct attention to several elements of program and policy in the area that would increase access to equipment from pharmacies relating to cost, need for exchange, police surveillance practices, out-of-hours access and anonymity. Treloar C, et al. “Does anyone know where to get fits from around here?” Policy implications for the provision of sterile injecting equipment through pharmacies in Sydney, Australia. Drugs: Education, Prevention & Policy 2010. 17(1): 7283 • Abridged from ingentaconnect.com http:// tinyurl.com/3wogjpr

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research updates NSP as a safe haven in an unsafe world.

Human rights for people who inject drugs

Canada – The purpose of this paper is to describe the meaning of needle exchange programs from the perspectives of users who access such programs.

USA – Efforts to provide HIV prevention, treatment, and care to injecting drug users are shaped by tensions between approaches that regard injecting drug users as criminals and those regarding drug-dependent individuals as patients deserving treatment and human rights.

A research team conducted observations, 33 semistructured interviews and two focus groups with users at four needle exchange sites. Qualitative description was used to analyse the data. Participants described experiences of trauma, abuse, violence and physical injuries that had damaged their lives and led to the use of drugs to numb the pain. Respect for persons and the development of trust with outreach staff for clients who use injecting drugs supported clients to feel safe in what for many was an unsafe world. Participants described the important role that needle exchange services play in reducing and countering negative stigma, as well as in providing access to clean supplies and to other services. The findings attest to the benefits of having trusted, safe needle exchange services that not only reduce risk behaviours that prevent infections, such as HIV and hep C, but also open the door to other services. This finding is particularly important given that the majority of those interviewed were homeless and living in poverty. The need for both fixed sites and the integration of harm reduction services as part of a broader network of primary health-care services was reinforced. MacNeil J, Pauly B. Needle exchange as a safe haven in an unsafe world. Drug Alcohol Rev. 2011. 30(1):26-32

Advocates for drug users’ health and human rights find common cause in urging greater attention to legal frameworks, the effects of police abuses, and the need for protections for particularly vulnerable populations including women and those in state custody. Arbitrary detention of drug users, and conditions of pretrial detention, offer examples of how HIV prevention and treatment are adversely impacted by human rights abuse. National commitments to universal access to prevention and treatment for drug users, and the recognition that users of illicit substances do not forfeit their entitlement to health services or human dignity, offer a clear point of convergence for advocates for health and rights, and suggest directions for reform to increase availability of sterile injection equipment, opiate substitution treatment, and antiretroviral therapy. For injecting drug users, protection of rights has particular urgency if universal access to HIV and hep C prevention and treatment is to become an achievable reality. Wolfe D, Cohen J. Human rights and HIV prevention, treatment, and care for people who inject drugs: key principles and research needs. J Acquir Immune Defic SynDr 2010. 1;55 Suppl 1:S56-62. • Abridged from http://tinyurl.com/44he344

• Abridged from nih.gov http://tinyurl. com/62cpsjm

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research updates Spotting gene variants may pinpoint anaemia problems

Coffee boosts hep C treatment response

Italy/Japan – Scientists have pinpointed two gene variants, called “ITPA”, that protect hep C patients from anaemia caused by antiviral treatment. The findings are detailed in the journal Hepatology.

USA – People with hep C and advanced chronic liver disease are more likely to respond to peg interferon and ribavirin treatment if they are heavy coffee drinkers, research suggests.

The ability to identify patients with the two gene variants will help ensure that antiviral therapy is completed and hep C is eliminated, the researchers say.

Patients who drank more than three cups of coffee a day prior to treatment were threetimes more likely to have a virologic response to therapy compared with non-coffee drinkers, a study of almost 900 patients with advanced hep C found.

In one study, Italian researchers looked at 238 hep C patients treated with combination therapy and found that the two variants were strongly associated with protection from anaemia. Japanese scientists found similar results in their study of 61 patients with hep C. • Abridged from businessweek.com (26 Jan 2011) http://tinyurl.com/3f27jtv

Irish team identifies hep C risk factor genes Ireland – Scientists have identified risk factors in the development of chronic hep C, which may lead to improvements in treatment. Scientists at Trinity College in Dublin have discovered two independent risk factors in the development of chronic infection, which together, increase the risk of chronic infection even further. The researchers analysed the genes of over 540 Irish women who had been infected with hep C as a result of contaminated anti-D blood products. Patients who developed chronic hep C were more likely to have particular variants of two genetic sequences. The first was the gene for KIR2DS3; the second was a single genetic mutation near interleukin-28B. It is hoped that these findings will help determine the prognosis for individuals and may also open up new avenues for the treatment of the infection. • Abridged from irishhealth.com (7 April 2011) http://tinyurl.com/3vpdpa7

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Three-quarters of these coffee drinkers had a significant drop in serum HCV RNA level by 12 weeks post-treatment, compared with only half of non-coffee drinkers. Furthermore, 25% of heavy coffee drinkers had a sustained virologic response (defined as the absence of detectable serum HCV RNA at week 72), compared with just 11% of non-coffee drinkers. Although these associations were attenuated after adjusting for factors such as alcohol consumption, smoking and ethnicity, they remained significant. The authors said it was unlikely that coffee had a direct antiviral effect. Rather, it was more likely that “coffee would have a facilitating effect on response to peginteferon and ribavirin by a mechanism yet to be understood,” they wrote. Alternatively the association could also simply be due to chance, they said, adding further studies were needed. Gastroenterology 2011 doi: 10.1053/j. gastro.2011.02.061 • Abridged from hepatitiscresearchandnewsupdates.blogspot (9 Mar 2011) http://tinyurl. com/3sv6sg2

research updates Menopause and obesity linked to treatment relapse

More thought needed to support hep C treatment

France – Christiane Stern and colleagues from Beaujon Hospital in Clichy, France, evaluated factors associated with post-treatment relapse among chronic hep C patients – particularly women – treated with combination treatment.

Australia – Better support for patients with drug and alcohol dependency could help reduce complications from hep C a new study published in the Medical Journal of Australia has found.

Response to hep C treatment is typically assessed at week-4 (rapid virological response), week-12 (early virological response), the end of treatment, and then 24 weeks after completing treatment (sustained virological response). A significant number of patients relapse after finishing therapy. A total of 249 previously untreated patients were given combination treatment. Patients with genotypes 2 or 3 were treated for 24 weeks, while those with genotypes 1 or 4 were treated for 48 weeks.

Researchers used data collected from a network of 24 clinics across Australia between April 2008 and December 2009 to determine how many people undertook treatment and who was more likely to defer treatment. “Of the 406 newly-assessed patients studied, only 42% commenced treatment within six months of first enrolling at the clinic,” said Ms Heather Gidding of the Kirby Institute at the University of New South Wales.

“Chronic hep C patients with genotype 1, presenting obesity and marked steatosis have higher rates of relapse,” the investigators concluded.

While the most common reason given for deferring treatment was that the person was still in the initial stage of the assessment process, almost one in four of those recorded as deferring treatment did not return for follow-up after their first visit.

“[Pegylated interferon] reduction, but not ribavirin reduction, is associated with relapse,” they said.

“Factors related to drug and alcohol use were the only factors significantly associated with deferral of treatment in our study,” said Ms Gidding .

“In female patients, menopause has a negative impact on SVR rates.”

It could be that the health care provider wanted to stabilise the patient’s drug or alcohol dependency before commencing treatment, or was reluctant to treat a former injecting drug user because of a perceived risk of relapse, she said.

Prior research has tended to find that older patients on average respond as well to treatment as younger individuals. But in many cases such analyses did not take sex into account. The fact that this analysis saw an age difference for women but not men adds to the evidence that oestrogen levels play a role in hep C outcomes. Stern C, et al. Menopause is Associated with Relapse in Chronic Hepatitis C Patients Treated with Pegylated Interferon Plus Ribavirin. AASLD 2010, Boston. Abstract 969. • Abridged from hivandhepatitis.com (15 Dec 2010) http://tinyurl.com/6fktr89

“Despite these concerns and our findings, there is limited evidence to suggest that outcomes of treatment for hep C are worse for patients being treated for drug dependency and currently using injecting drugs,” said Ms Gidding. “Improved co-management of drug and alcohol dependency together with enhanced infrastructure for the delivery of hep C treatment should enable increased uptake of treatment for hep C at the population level and reduce the morbidity associated with this disease.” • Abridged from medicalnewstoday.com (16 Apr 2011) http://tinyurl.com/3vh63vv

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interferon-based treatment Interferon-based treatment Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily. Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly anti-HCV positive and HCV RNA positive). Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms

of contraception (one for each partner). Female partners of men undergoing treatment must not be pregnant. Age: People must be aged 18 years or older. Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information). Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. The baseline and 12-week tests must be performed at the

same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006 a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government-subsidised S100 hep C pharmaceutical treatment. Note that some people with genotype 2 or 3 may still require

CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peg interferon mono-therapy if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.

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complementary medicine biopsy to determine whether they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring. For further information on this issue, please speak to your treatment specialist or phone the Hepatitis Helpline. Alternative access People wanting to access interferonbased therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline. NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre. In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).

Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see ED24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see ED45, page 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis?

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.

• What are the side effects? • Are they a member of a recognised natural therapy organisation? • How have the outcomes of the therapy been measured?

• Hepatitis NSW. To access any of the above mentioned articles, please phone the Hepatitis Helpline.

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support and information services Hepatitis Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers). Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.

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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 3rd Thursday of each month at the Health Services Building, Gosford Hospital. Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast hep C support group A peer support group for people living with or receiving treatment for hep C. Meets 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.

Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466. Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 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.

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noticeboard / promotions The most precious gift

Upcoming events

We hope that all readers – including those people living with hep C – will consider registering to donate their body organs.

The 2011 Haemophilia Conference will be held on 20-22 Oct 2011 at Olympic Park, Sydney: http://tinyurl.com/24n9oy4

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.

The 18th National Symposium on Hepatitis B and C will be held on 19 Nov at St Vincent’s Hospital, Melbourne.

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.

Complaints If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2 Or see page three for our phone number and postal address.

Please phone 02 6198 9800.

Do you want to help us?

Image courtesy of Google Images

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).

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Stay up to date with what’s happening in the hepatitis sectors. Take a look at the WDP website. It includes a training directory and has information and resources on harm reduction and health promotion, and provides updates on upcoming events. ASHM runs ongoing WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details. We invite you to use our website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at wdp@ashm.org.au or phone Ronnie Turner, Program Manager, 02 8204 0722.

www.wdp.org.au

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Edition 73

June 2011

membership form / renewal / tax invoice An invitation to join / rejoin Hepatitis NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About us We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to work in the best interests of and provide services for people affected by viral hepatitis in NSW.

Please complete A or B or C, then complete other side

A. For

people affected by hepatitis or other interested people

Name P ostal address S uburb/ town

Hepatitis NSW is overseen by a voluntary board of governance, mainly made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and financial support of our members.

Name

Hepatitis NSW respects and upholds your right to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information.

Occupation

For a copy of the policy, please contact us on 02 9332 1853 (Sydney and interstate callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hep.org.au

Membership Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) are required to renew their memberships annually to retain member benefits.

For NSW health care workers One of our services is the NSW Hepatitis Helpline, an information and support phone line whose staff are able to refer callers to a range of services and health care workers in their local area (within NSW only). If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular hepatitis information. The Hep Review, the most widely-read hepatitis publication in NSW, targeting both people affected by hepatitis C and health care workers, is provided free to all members of Hepatitis NSW. If your service has clients or patients who may be interested in The Hep Review please indicate the number of extra copies you would like to receive.

64 www.hep.org.au

State

P ostcode

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E mail

For individual healthcare or related professionals

Postal address Suburb/town State

Postcode

Work phone

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May we list you on our referral database? Free copies of The Hep Review required

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For agencies, organisations and companies

Name of agency Contact person Position Postal address Suburb/town State

Postcode

Work phone

Work fax

Mobile

May we list you on our referral database? Free copies of The Hep Review required

2 5 10 20 50 80 160