Hep Review ED74 by HepatitisNSW

Hep Review Spring 2011

September

Edition 74

Free c opy Pleas e take

Cover: Two wheels from Wellington

r treatment Preparing fo se d liver disea Centrelink an ep C Babies and h s out ss Week roll e n re a w A W NS Hep Review

reness inal hep awa g ri o b A W S N 21 mill bill r may face $ to c o d C p e H ep C Hip hop for h rt kit orker suppo w th u o y w e N

Edition 74

September 2011

editor’s intro

i everyone and welcome to ED74, an edition that highlights community work such as Darren Ellwood’s awareness raising campaign. This Hep Hero is doing a great job in raising awareness in Central NSW; it’d be so good to have such a visible advocate in every district across NSW (see page 18).

Another hep hero is Steve Tulett who is heading a group of people organising the HEPConcert at Surry Hill’s Gaelic Club. It mightn’t be the first hep awareness concert (HepFest at Bondi Pavillion probably holds that crown) but it’s certainly the biggest and potentially, the most successful, so far. Hats off to you Steve! (See page 45.) On a sad note, we farewell two long-time hep heroes; Cheryl Burman, past president of Hepatitis NSW, committed volunteer, board member, activist and leader; and Andy Hart, persistent, passionate and poetic proponent of hep C prevention (see pages 24-25). [Stop press: also see Owen Westcott, page 17.] In reflecting on Darren, Steve, Cheryl and Andy, I’m keenly aware of the great work carried out by workers and volunteers towards addressing hep C in NSW. Volunteer effort in the community was further emphasised for me when I accompanied my wife – who works in Alzheimers – to a recent Clubs NSW community grants awards evening at Souths Juniors, Maroubra. The room was filled with representatives from hundreds of community-based charities, all carrying out wonderful, often unnoticed work in their local communities. Wonderful stuff; do you want to help out? See page 62.

a keyhole to our work Children and hep C

t’s fortunate that relatively few children have hepatitis C as it would be a worrying concern for children who have it, or for their parents. Our staff who work on the Hepatitis Helpline take calls from parents with queries and concerns about children and hep C. While calls about children with hep C number fewer than five in any year, many more calls are from parents – most commonly mums with hep C – who are very concerned and often very anxious about the risk of transmitting hep C to their new born baby. Hep C can be passed on to a baby from its mother before or during birth, but this is not common. Of 100 babies born to mothers with hep C, only around seven babies will get hep C this way. There is no evidence to show that hep C can be transmitted from a father, through his sperm. Queries also centre on testing of pregnant mumsto-be who are seldom provided with decent preand post-test information or counselling. A common question is: can hep C be transmitted through breastmilk when mums are breast feeding their babies? A further common query from parents with hep C is: at what age should they have their baby tested to see if hep C has been transmitted?

Weblink of the month

A team of scientists has found a way to restore damaged livers using adult skin stem cells. The technique raises the possibility of what Professor Geoff McCaughan is calling the Holy Grail, that people now needing liver transplants could be simply treated with an injection of their own cells: http://tinyurl.com/3gy23dx

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

www.hep.org.au

Cover image by Paul Harvey

acknowledgements Fortunately, the risk of transmission of hep C through these routes is extremely low.

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Lia Purnomo Rhea Shortus Andrew Smith

Telling your child that you, as their parent, have hep C poses difficult choices too. Our Hepatitis Helpline provides plenty of good, accurate printed and online information about hep C and children. We often write letters to the editors of newspapers in response to sensationalist reporting on transmission risks when children occasionally find discarded needles in public places. But what about care, management and treatment for children who have hep C? Inappropriate disclosure at school about a child’s hep C status can cause immense hardship for that child and their parents. It’s important to be very careful about whom to tell, and to think about why you need to tell them. There are moves in NSW to have pharmaceutical treatment for children with hep C recognised as an important consideration for policy makers and clinicians alike.

Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Sophia Lema, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Prue Astill Sarah Fleet Adrian Rigg Cindy Tucker First dog on the moon comic: Andrew Marlton Contact Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au text/mobile 0404 440 103 post Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney

There are at least two views on this matter. Firstly, some clinicians say children with hep C should be treated while they are still children. There are some valid reasons for this view: fewer treatment side effects; better chances of treatment success; and possibly the strongest argument: if you can cure hep C early on, then children won’t have to cope with liver disease progression later on in their lives. 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 74

September 2011

contents News NSW Hepatitis Awareness Week rolls out 5 Nepean liver clinic’s good work recognised 6 New Bathurst clinic and nurse support for hep C 6 Doctor rejects dying man 7 Our theme of twenty 7 NSW Aboriginal hep awareness campaign kicks off 8 Melbourne injecting centre gets support 8 Moore report calls for more action on prison NSP 9 Hep C doctor may face $21mill bill 9 Australian approval of new hep drugs 10 AIHW reports liver deaths and obesity rising 10 New drugs may be in short supply in Australia 10 Korean hep C triples over last decade 11 Chinese and US set up joint liver treatment clinic 11 Chinese woman’s hep B dinner dates 12 4.5mill Vietnamese with hep C 12 Vancouver injecting centre fights on 13 Merck, Roche to jointly develop hep C drugs 13 Obama starts intensive hep B campaign 14 Grapefruit to combat overweight, diabetes and hep C 14 Merck donates largest natural products library 15 Interactive global liver cancer map 15 UK considers hep C drugs Victrelis and Incivek 15 Telehealth program shows promise for hep C 16 Gold nanoparticles help diagnose liver cancer 16

Features Obituary – Owen Westcott 17 Preparing for treatment: the nuts and bolts 20 Obituary – Andy Hart 24 Obituary – Cheryl Burman 25 Hep C and Me 26 Hip hop for hep C 27 Cheques and balances: Centrelink and hep C 28 Youth worker support kit raises awareness about hep C transmission 42 Untreated hep B to send our liver cancer rate soaring 43 The Good, the Bad and the Infected 44 Children can have hep C too 46

Opinion Drug policy: the case for realism

My story Darren’s story: Two wheels from Wellington Linda’s story: Making a difference

18 38

Promotions CHI study ATAHC II acute hep C study

www.hep.org.au

5 6

Resource of the month – Treatment, Life, Hep C & Me 7 RAMPT-C acute hep C study among MSM 8 St Vincent’s viral hepatitis trials 9 Our Twitter feed 11 HALC legal centre 12 St George Hospital liver clinic 13 Paediatric viral hepatitis clinic 17 HEPConcert 2011 45 Hep Review community distribution 47 Do you want to get healthy? 48 Bathurst’s new hepatitis clinic 48 Hep C bookmarks 50 Our website 51 Transmission Magazine 51 HepConnect peer support service 51 The most precious gift 62 ASHM workforce development program 62

Research updates Genetically humanised hep C mouse developed 52 Stones shown to be hep C breeding grounds 52 Predictors for hep C treatment in Australian clinics 53 Factors associated with specialist assessment and treatment for hep C in NSW 53 US public supports universal hep C screening 54 US age-based hep C screening 54 All-cause mortality higher with hep C 55 Hep C treatment for people on pharmacotherapy 55 DEPDC5 hep C liver cancer gene discovered 56 Coffee and hep C treatment response 56 Hep C knowledge among NSW Egyptian community 57 Language backgrounds of Australian hep B 57

Regular features Keyhole to our work – Children and hep C 2 Q&A – What’s the main thing holding people back from treatment 17 The little book of hep C facts 25 Harm reduction poster – Vein care 32 All you need to do is ask – Health Survival Tips DVD 36 Hello Hepatitis Helpline – Hep A 41 Membership matters 49 A historical perspective (from October 1996) 49 Interferon-based treatment 58 Complementary medicine 59 Support and information services 60 Do you want to help us? 62 Upcoming events 62 Complaints 62 Membership form / renewal / tax invoice 63

promotions

news

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

Charting Health Impacts www.chistudy.org.au

Image courtesy of Google Images

CHI study

NSW Hepatitis Awareness Week rolls out New South Wales – NSW Hepatitis Awareness Week was celebrated during 25-31 July and this week incorporated the new date for World Hepatitis Day. The 28th of July was chosen by the World Hepatitis Alliance, and endorsed by the World Health Organisation. It is the birth date of Nobel Laureate Professor Baruch Blumberg. Professor Blumberg was a leading figure in the research which led to the discovery of the ‘Australian antigen’: the hep B virus; and ultimately the development of a hep B vaccine. A large number of awareness raising events took place around NSW and Hepatitis NSW celebrated NSW Hepatitis Awareness Week and World Hepatitis Day with a morning tea at the Australian Museum. The Hon Melinda Pavey MLC, Parliamentary Secretary for Regional Health launched NSW Hepatitis Awareness Week, World Hepatitis Day and the Youth & Health Worker Support Kit developed by Hepatitis NSW. Other activities that took place during the week included numerous arts based activities, information sessions in community languages including Vietnamese, Arabic and Chinese, youth focused events including Hep Hop Discos, and information stalls in hospitals and community spaces. A large number of the awareness raising events that took place across the state were funded by the Hepatitis NSW Awareness Week Community Grants Program. • Sarah George, Hepatitis NSW

Hep Review

Edition 74

September 2011

news Nepean liver clinic’s good work recognised

New Bathurst clinic and nurse support for hep C

New South Wales – The excellent work being done by a specialised unit at Nepean Hospital has been recognised as part of International Nurses Day – 12 May.

New South Wales – A new medical clinic in Bathurst is open to receive referrals for hep C patients who require assessment, treatment and follow-up services.

The liver clinic is highly regarded for its treatment of viral hepatitis.

Dr Darryl MacKender and Dr Bruce McGarity will be seeing patients at the Division of General Practice on Durham Street on Thursdays.

Clinical nurse consultant Vince Fragomelli and his team were honoured for their work in caring for those with the virus. “We have a nursing-led model whereby patients are predominantly cared for by the nursing staff. “I have two nurses working with me and we have satellite clinics at Blue Mountains and Lithgow hospitals. We also have clinics within the methadone clinic here and the needle and syringe exchange here at the hospital.

Patients can access further support at Bathurst Base Hospital on Monday to Friday from hepatitis nurse, Katherine McQuillan. “I’ll be there to support patients through their treatment, and to monitor pathology results and side effects,” Ms McQuillan said. “I will also provide links to allied health services, lifestyle education, and general support to people with hep C.”

“It’s a nursing model of care and it facilitates rapid assessment and initiation of treatment for patients living with viral hepatitis.”

“Our priority is not only to treat patients, but to educate the community about steps they can take to protect their general health and wellbeing.

He added clinical trials being carried out at the site gave those patients access to “state-of-the-art therapies that they otherwise may not be able to access”.

“The launch of this new medical clinic is a great opportunity for people to be treated and to reduce the burden of liver disease on our community.”

• Abridged from penrith-press.com (28 May 2011) http://tinyurl.com/6yr5xgz

• Abridged from westernadvocate.com (26 May 2011) http://tinyurl.com/5sgn8k5 Also see clinic promotion, page 48.

Would you like to help with hepatitis C research? You can if you have recently contracted hep C Research Study Treatment of recently acquired hepatitis C virus infection (ATAHC II) The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) is running a hepatitis C study for patients who have acquired hepatitis C recently (in the last two years). ATACH II aims to explore the best treatment strategy for patients with recently acquired hepatitis C infection. You can choose to receive treatment or not if you decide to help. There are clinics participating in the study in Sydney, Melbourne, Brisbane and Adelaide. Contact Barbara Yeung at the Kirby Institute on 02 9385 0879 or byeung@kirby.unsw.edu.au to find out about the study or to find your nearest site. The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee

www.hep.org.au

news

Doctor rejects dying man

Our theme of twenty

New South Wales – A gravely ill man, wrongly assumed to be “an addict craving strong drugs”, died in agony hours after being discharged from a NSW country hospital, a coroner has found.

New South Wales – Hepatitis NSW is no longer a teenager. November 2011 marks our 20th anniversary. We will be celebrating with a range of events over the following 12 months that will enable us to celebrate the achievements that have got us where we are today.

A deputy state coroner, Hugh Dillon, said while Michael Sutherland was in Bega Hospital’s emergency department he was refused the pain relief he needed for his “excruciating condition”. The coroner was delivering his findings at the inquest into the death of Mr Sutherland, who had clung to his hospital bed begging not to be sent home. Mr Sutherland had told others that the staff thought he was a “junkie” who had been “wanting drugs like an addict”. The coroner found the 52-year-old died of faecal peritonitis, which had not been diagnosed before his discharge the previous day.

It will also be an opportunity for us to look ahead which is why we will be launching a series of 20 advocacy requests or “asks” that we can use in a range of settings to both help improve the quality of life of people affected by hep C and also help prevent new transmissions. These asks will form the basis of a manifesto and will be a call for action around what we want to achieve with viral hepatitis over the coming years. We will have more information in our next edition along with a special “20th Birthday” edition. • Hepatitis NSW

He concluded that the hospital’s Dr Dorothea Bonney made a “gross error of judgment” after forming a fixed view that “his underlying problem was substance abuse”. Nurses seemed to have been more sensitive to Mr Sutherland’s condition, but were “rebuffed” by Dr Bonney. • Abridged from smh.com.au (15 July 2011) http://tinyurl.com/696cyw7

Featured resource of the month: Treatment, Life Hep C & Me “People with hep C wondering about treatment are sure to find this book both a resource and a comfort.” – Paulie Stewart, Painters & Dockers and The Transplants. In NSW, for single free copies of the booklet, please phone the Hepatitis Helpline: 1800 803 990 For bulk free supplies in NSW, please use our faxback resources order form ... http://tinyurl.com/2gx6hrc

Hep Review

Edition 74

September 2011

news NSW Aboriginal hep awareness campaign kicks off New South Wales – The Aboriginal Health and Medical Research Council of NSW has developed a Love your Liver hep C awareness campaign. It includes a wide range of multimedia resources developed by nine communities to educate and challenge the shame around hep C. Workshops will take place throughout 2011 to develop and showcase these resources. The workshops will be facilitated by members of the multi award winning hip hop group, The Last Kinection, as well as local health workers and community leaders. Participants get a chance to develop a health promotion poster, write and record a song, produce a video and even an animation. There will also be a free community showcase featuring the participants productions and of course, an exclusive performance by The Last Kinection. Places for the workshops are limited and you must be over 16 years of age and Aboriginal or Torres Strait Islander.

Melbourne injecting room gets support Victoria – The Yarra Council recently voted sixto-one in favour of a trial for a supervised room for heroin users in Richmond. But a major stumbling block for the local council in getting the room’s go-ahead is the Victorian Government, which opposes drug injecting rooms. Premier Ted Baillieu says the Government will not consider the proposal. Many residents are also in support of the move, but businesses say while drug use is a serious problem in the area, an injecting room is not the answer. But if the callers to ABC local radio in Melbourne are anything to go by, people overwhelmingly support the idea of trialling the supervised drug injecting room. “From a personal point of view, it’s just going to clean the street up and make it a lot safer,” said one local, who lives near the streets known as the ground zero of Melbourne’s heroin trade. • Abridged from abc.net.au (18 May 2011) http://tinyurl.com/655y6js

For more information check the campaign website: http://www.loveyourliver.net.au/ • Abridged from the campaign website.

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

www.hep.org.au

Moore report calls for more action on prison NSP Australian Capital Territory – On World Hepatitis Day, ACT Chief Minister, Katy Gallagher MLA, and Michael Moore, Public Health Association of Australia (PHAA), launched the report: Balancing Access and Safety: Meeting the challenge of blood-borne viruses in prison. The report has put forward a number of options for a future introduction of a Prison Needle and Syringe Exchange (PNSE) in the ACT. “The Government engaged Michael Moore to investigate and report on models for the implementation of an PNSE at the Alexander Maconochie Centre and the project included an assessment of the barriers to implementation with a broad range of consultations held with key stakeholders,” Ms Gallagher said.

news Hep C doctor may face $21 mill bill Victoria – The Victorian State Government may have to deal with a lawsuit worth millions after a doctor who was accused of giving hep C to 54 different women faces 162 multiple charges. Dr James Latham Peters, who worked as an anaesthetist at a clinic in Melbourne, was granted a $200,000 bail after a 15-month investigation. Because he passed on hep C to 54 different women, he faces 54 separate charges of conduct endangering life, 54 charges of recklessly causing injury, and 54 charges of negligence causing serious injury. Because personal injury claims from each of the women could be up to $430,000 individually, there could be an overall compensation bill of more than $21 million.

The report has made seven recommendations and the Government will now consider the recommendations, and seek the views of the community about the report, prior to finalising our response to report.

On 30 September, Dr Peters will face the Melbourne Magistrates’ Court for a committal mention. A condition of his bail prevents him to practice medicine or be in contact with staff at specific medical centres. He also had to surrender his passport so that he can not leave the country.

• Abridged from a press release (28 July 2011) http://tinyurl.com/3g3g8j4

• Abridged from topnews.us (28 May 2011) http://tinyurl.com/6bvcnac

St Vincent’s viral hepatitis trials Image courtesy of Google Images

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

Hep Review

Edition 74

September 2011

news Australian approval New drugs may be of new hep drugs in short supply in Australia – The Pharmaceutical Benefits Advisory Australia Committee (PBAC) meets on a regular basis to make recommendations on which new drugs are listed (subsidised) on Medicare. Victrelis (boceprevir) was up for consideration at the July 2011 PBAC meeting but the committee is unable to publicise its recommendation (for or against Medicare listing) until the Therapeutic Goods Administration (TGA) approves boceprevir for use as a hep C treatment drug in Australia. It is believed that Victrelis is one of the first drugs to be put through “parallel processing”. This is where both TGA and PBAC approvals are lodged at the same time. Ideally, this cuts down the time taken for overall approval and recommendation; but in the case of Victrelis, timing hasn’t worked well and we must now wait for further news from the TGA. At the time of going to print – while the drug has been approved in the USA, Canada and the European Union – the Australian Therapeutic Good Administration would give no comment or news on the approval of Victrelis. • Hepatitis NSW

AIHW reports liver deaths and obesity rising Australia – A recent report released by the Australian Institute of Health and Welfare has revealed that deaths due to liver cancer have risen. Factors influencing this are believed to be excessive alcohol consumption along with heps B and C. Additionally, the report showed that obesity remains a continuously growing problem in Australia with 60% of adults and almost a quarter of children falling into the category. • Abridged from newstonight.net (20 jUNE 2011) http://tinyurl.com/6ke6u5o

www.hep.org.au

Australia – The newly-licensed protease inhibitors boceprevir and telaprevir appear to be in short supply in the United States. It is believed that there has been stronger than expected demand from large numbers of US patients who have held off undergoing treatment until the new drugs become available. There are suggestions that the drugs will have to be rationed in Australia, with patients with more severe liver disease being given preference, says Professor Bob Batey, Viral Hepatitis Clinical Program Director at the Australasian Society for HIV Medicine (ASHM). Professor Batey says that if the drugs were on the market now in Australia, there would be shortages. “Australia’s small numbers of hep C patients relative to the US and Europe means we’re at the bottom of the supply chain,” he says. The situation is reminiscent of the 1990s, when Australia saw significant shortages of interferon and ribavirin, he says. But the fact that both drugs won’t be fully approved by the PBS and on the market here in Australia until probably the end of next year (2012) may give the manufacturers Merck and Vertex some breathing space to increase supply, he says. He expects both drugs will be licensed in Australia for use in triple therapy (that is, with interferon and ribavirin, plus either boceprevir or telaprevir) both for those people being treated for hep C for the first time, and for people who’s previous treatment didn’t clear the virus. But it may well be that doctors hold off using the new drugs for a year or so in those with mild liver disease and in people who’s previous treatment didn’t work, he suggests. This would also give doctors a chance to see how the drugs perform in the community outside of clinical trials. • Peter Lavelle, a freelance health writer who regularly contributes to Hep Review magazine.

Image courtesy of Google Images

Korean hep C triples over last decade Korea – The number of people with hep C in Korea increased almost three-fold from 2002 to 2010. The number of hep C patients topped 5,600 as of last year. The 2002 figure only stood at around 1,900, according to the Korea Centers for Disease Control and Prevention. The health authority warns that the virus can lead to chronic liver disease, including cancer.

news Chinese and US set up joint liver treatment clinic China – A liver disease research and treatment centre has been jointly established by Chinese and US medical institutions in Hangzhou, the capital of east China’s Zhejiang Province. The centre, which was established by the UCLA Medical Center and China’s First Affiliated Hospital of the College of Medicine of Zhejiang University, aims to increase cooperation between the two countries in the area of liver disease research, according to a hospital official. Many people in China are affected by hep B and liver cancer, including 120 million people with the hepatitis B virus, said Zheng Shusen, an academic from the Chinese Academy of Engineering and head of the hospital. The centre will utilise medical resources and experience from both of its founding institutions, Zheng said. • Abridged from xinhuanet.com (2 June 2011) http://tinyurl.com/5v8zv66

Unlike hep A and B, there is no vaccine for hep C, nor are there any noticeable symptoms of the disease, so regular blood tests are recommended. • Abridged from chosun.com (21 July 2011) http://tinyurl.com/6yukkee We believe the figures above refer to the number of Korean people treated for hep C.

We publish many more hep related news items 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.

Hep Review

Edition 74

September 2011

news Chinese woman’s hep B dinner dates China – “Chu Cao” was diagnosed with hep B in 1994 and now campaigns across China to increase knowledge about the disease. In each of the 23 cities she has visited so far, she holds up a sign offering to buy dinner for whoever is willing to eat with her: I am a Hepatitis B carrier. I want to tell you: Hepatitis B is not a gastrointestinal disease. You will not get it by sharing meals with me or through daily contact. I’ll treat you to a meal, come eat with me! Since beginning her campaign in April 2010, she has visited 23 cities and treated 121 people to dinner, including this last visit to Zhengzhou in April 2011, where she dined with five people. If you’re interested in disease discrimination in China, watch the Oscar-winning short The Blood of Yingzhou, available in parts on Youtube. • Abridged from shanghaiist.com (26 aPR 2011) http://tinyurl.com/6e6c7xs

HALC

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

HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.

www.hep.org.au

4.5 mill Vietnamese with hep C Vietnam – The Ho Chi Minh City Liver and Gall Association has sounded a hep C alarm, saying that more than 5% of the country’s population, or 4.5 million people, are affected. Pham Hoang Phiet, Association chairman, explained that 30% caused serious liver problems like cirrhosis and cancer. “Hepatitis C patients made up 30% of our total patients during 2010,” said Dr Pham Thi Thu Thuy, head of the Liver Department at the private Ho Chi Minh City based Medic Medical Centre. Thuy said, adding the total number of hep C patients coming to the department for treatment during 2011 thus far, came to around 10,000. Many Vietnamese with hep C cannot be fully treated due to high costs which could range from VND4 million to VND20 million (US$186-930) per month, Thuy explained, adding that, “Most patients face financial difficulties. Only the rich are able to afford treatment.” “One of our patients sold her house in order to afford treatment – she now sleeps in her market stall,” Thuy said. Nguyen Van Khiem, a 31-year-old worker from south-eastern Dong Nai Province, said that he could not afford the VND5 million ($240) treatment with his VND1.8 million ($86.5) salary. Dr Vo Minh Quang, from the Ho Chi Minh City Tropical Hospital, said that during April the hospital had diagnosed more than 1,600 people with hep C, most unable to afford treatment. The hospital has called on the Ministry of Health to support HCV treatment for poor people. • Abridged from vnagency.com (9 June 2011) http://tinyurl.com/5vlqryq Also see Ed73, page 7.

Vancouver injecting centre fights on Canada – Canada’s top court will hear arguments about whether Insite, a safe drug-injection site in Vancouver’s Downtown Eastside, should be legally allowed to stay open. At issue is which government – federal or provincial – has power over Insite and whether shutting it down infringes on the human rights of drug users. Insite, co-managed by PHS Community Services Society and Vancouver Coastal Health, allows dependant drug users clean, safe space and equipment to inject their own street drugs under medical staff supervision and has operated under federal drug law exemptions for several years. Recently, the federal Conservative government ended those exemptions and has been seen as keen to close the facility. PHS director Mark Townsend said the overwhelming evidence showing the site has saved lives and taxpayer money should have been enough to convince Conservatives to cool their “tough-on-crime” agenda in Insite’s case. “It’s easy to attack drug users,” Townsend said. “This shouldn’t be a political thing, it’s a public health thing.”

news Merck, Roche to jointly develop hep C drugs USA – Merck and Roche have signed agreements through their subsidiaries to work for the improvement, diagnosis and awareness of hep C. Merck and Roche are expected to investigate the combinations of marketed and experimental medicines of both parties to speed up the availability of potential new treatment regimens. Roche will promote Victrelis (boceprevir) to physicians as part of a triple combination therapy regimen. Adam Schechter of Merck Global Human Health said by working together they will be able to provide physicians, nurses and patients with education about the disease, its diagnosis and treatment options including the appropriate use of Victrelis. • Abridged from drugdiscovery.pharmaceuticalbusiness-review.com (18 May 2011) http:// tinyurl.com/6gntqjz A similar agreement exists between Roche and Merck here in Australia.

• Abridged from theprovince.com (8 May 2011) http://tinyurl.com/659sz7x

Image via Google Images

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

Hep Review

Edition 74

September 2011

news Obama starts intensive hep B campaign USA – To make Asian-Americans and Pacific Islanders (AAPIs) aware of hep B, the Obama administration has started an intensive information drive to discuss the risks, treatment and prevention of the disease. Already, the President’s Advisory Commission on AAPIs is coordinating with local groups in various cities for the campaign. “We really want to make sure AAPIs are aware of this disease,” said Rozita Lee, a member of the President’s Advisory Commission. The commission was created last year as part of the White House’s initiative to improve lives of AAPI immigrants. “One in 10 individuals has the disease. Globally, there are 300 to 400 million people infected. The estimate is every 45 seconds, somebody dies from it,” said Dr Noel Fajardo. The Las Vegas-based gastroenterologist was speaker at a discussion attended by Lee, members of the local Asian-American community as well as officers of the Nevada chapter of National Federation of Filipino-American Associations (NaFFAA). Fajardo, of Las Vegas Gastroenterology, is spearheading a city-wide campaign that targets AAPIs, particularly the Filipino community. “The Philippines, being in a high endemic region, the risk in our community is very high,” he said. “In the (Filipino) community, it is usually transmitted vertically, meaning from the mother to child during childbirth,” he said. • Abridged from asianjournal.com (30 June 2011) http://tinyurl.com/6x487qm

Grapefruit to combat overweight, diabetes and hep C Israel – Imagine a pizza topping that you sprinkle over the cheese like oregano, made from a secret ingredient that will help your body break down all the fat, so that it won’t clog your arteries. This is one of many real possibilities coming out of a Hebrew University-Harvard University team working on extracting naringenin, a compound from grapefruit that can improve the way human metabolism deals with fatty and sugary food. The team report that nanotechnology can alter naringenin so that it is absorbed 11 times better than normal. The research on this citrus extract is led by Dr Yaakov Nahmias from the Benin School of Engineering and Computer Science at the Hebrew University of Jerusalem. The studies hold significant implications for the drug market, particularly in relation to diabetes, obesity, arteriosclerosis and even hep C, said Nahmias. Based on clinical studies now underway in Massachusetts General Hospital, it could even revolutionise the approach to hep C drugs. “Type II diabetes patients need to take drugs to make their body more sensitive to insulin. They also have problems with elevated lipids. Our clinical trial is for hep C, which assembles on the LDL triglycerides. We’ve found [our molecule] can block the production of the virus,” explained Nahmias. Nahmias, a biologist and chemical engineer, believes he will follow this research through for the next few years in his quest to understand the way body cells “think” about metabolism. “Instead of treating the symptoms, we are treating the cause. The cause is food. It all starts and ends with food, and the way our body reacts to it.” • Abridged from israel21c.org (5 June 2011) http://tinyurl.com/3njtn49

www.hep.org.au

Merck donates largest natural products library USA – The Institute for Hepatitis and Virus Research (IHVR), the research arm of the US Hepatitis B Foundation, announced that Merck Sharp & Dohme will donate its entire natural products library, along with an undisclosed grant, to help enable open access to the library for researchers worldwide. “This extraordinary opportunity for the Hepatitis B Foundation ... allows us to make this treasure available to scientists from all over the world,” said Dr Timothy Block, founder and President of the Hepatitis B Foundation and IHVR and a Professor of Microbiology at Drexel University College of Medicine. The Merck natural products library is considered to be one of the most diverse and best curated natural products libraries in the world. It includes approximately 100,000 screen-ready extracts and represents approximately 60% of all known plant genera in the world. “Merck’s natural products library will now be available to a wider scientific community with the hope it will assist others in the discovery of new therapies for patients,” said Dr Tony Ford Hutchinson, Merck Senior Vice President for Vaccines Research and Development. “[Our grant] will also keep this extensive 30-year library collection alive and well.” “Natural products” refer to compounds derived from living organisms, such as plants and microorganisms. Many medications were originally derived from natural products, including drugs to treat bacterial and fungal infections, high cholesterol, high blood pressure, immune suppressants for organ transplants, cancer and diseases and disorders of the central nervous system. In 2009, 45% of all US FDAapproved drugs were derived from natural products. • Abridged from prnewswire.com (6 June 2011) http://tinyurl.com/6cla7ju

news Interactive global liver cancer map USA – Outsourcing-Pharma has built an interactive map of mortality risk for major cancers around the globe and the liver cancer page makes for interesting reading. What emerges from looking at the mortality rates of different cancers is the uneven distribution. For example, liver cancer is a blight on the people of Mongolia, a consequence of high rates of hep C and B combined with alcohol, but barely registers in some other countries. The other visualisations in this series, which is based on data from Globocan , take a closer look at each region. As well as variation from regionto-region and country-to-country there can also be considerable variation within each nation. • Abridged from outsourcing-pharma.com (7 July 2011) http://tinyurl.com/64nn6qh NB: also see ED 73, page 30.

UK considers hep C drugs Victrelis and Incivek UK – The UK National Institute for Health and Clinical Excellence’s next round of drug appraisals is set to include two new hep C drugs: Merck Sharpe and Dohme’s Victrelis (boceprevir) and Johnson & Johnson’s Incivek (telaprevir). Victrelis is set to be the first on the market, having just been recommended for European approval, while J&J’s Incivek could be licensed in Europe by the end of the year. • Abridged from inpharm.com (26 May 2011) http://tinyurl.com/5wa5c72 We can report that Merck’s hep C drug Victrelis (boceprevir) has been approved by the EU: http://tinyurl.com/3q5vfb2

Hep Review

Edition 74

September 2011

news Telehealth program shows promise for hep C USA – A New Mexico-based program that uses internet telehealth technology and casebased learning helped to increase the number of consultations provided for hep C and other chronic diseases, according to a new study. The initiative called Project ECHO (Extension for Community Healthcare Outcomes) involves online links between specialists and doctors. It also provides online disease management tools to aid in patient consultations and a centralised database to monitor patient outcomes. The doctors undergo an orientation and training at UNM’s School of Medicine in Albuquerque, where they learn about the project’s communication technology and weekly telehealth clinics. According to the study, fewer than 1,600 New Mexico residents had received treatment for hep C and chronic liver disease before Project ECHO began its pilot program in 2003. However, by March 2011, Project ECHO’s 298 teams had collaborated on more than 10,000 consultations for hep C and other chronic conditions, the study found. • Abridged from ihealthbeat.org (20 May 2011) http://tinyurl.com/6knyj6u

www.hep.org.au

Gold nanoparticles help diagnose liver cancer USA – Hepatocellular carcinoma is the most common cancer of the liver. More than 500,000 people worldwide, concentrated in sub-Saharan Africa and Southeast Asia, are diagnosed with it yearly. Most of those afflicted die within six months. A big obstacle to treatment of liver cancer is the lack of early diagnosis. Current techniques spot tumours only when they have grown to about 5cm in diameter. By that time, the cancer is especially aggressive, resisting chemotherapy and difficult to remove surgically. Now a research team led by Brown University reports some promising results for earlier diagnosis. In lab tests, the team used gold nanoparticles circled by a charged polymer coating and an X-ray scatter imaging technique to spot tumour-like masses as small as 5mm. The approach, detailed in the American Chemical Society journal Nano Letters, marks the first time that metal nanoparticles have been used as agents to enhance X-ray scattering signals to image tumour-like masses. • Abridged from healthcanal.com (22 June 2011) http://tinyurl.com/65t4jgq

Q&A:

What’s the main thing holding people back from hep C treatment? Heather Gidding, a researcher at the Kirby Institute, recently explained a research project that looked at barriers to hep C treatment in Australian treatment clinics. In looking at a range of 24 clinics, the study provided a good general picture of the Australian hep C treatment scene. It followed a group of patients for six months after their first visit to the clinic and checked whether they took up treatment – and if not, why they decided “no”. At the six month stage, lots of people still hadn’t decided “yes” or “no”. But of those who had declined treatment, the most common reason was their own alcohol or other drug use. The study suggested that further support for patients with drug and alcohol dependency is required to optimise treatment uptake. For further info, see Preparing for treatment: the nuts and bolts, page 20. For more info, phone your Hepatitis Helpline – 1300 437 222 (local call costs)

obituary Owen Westcott 1946-2011

wen Westcott died on Friday afternoon, 26 August. It is with great sadness that we mourn the passing of another hepatitis hero. Owen will be known by all people working in NSW Needle and Syringe Program as the former senior policy analyst in the AIDS and Infectious Diseases Branch at NSW Health. He had responsibility for policy and operational aspects of the NSW Needle and Syringe Program, and for hepatitis C. The NSW Needle and Syringe Program has been shown to be effective in reducing hep C prevalence rates in people new to drug injecting. It has been estimated that NSPs prevented 21,000 hep C infections (from 1991 to 2000). In doing so, NSP has saved an estimated $783 million in lifetime hep C treatment costs. In our next edition of Hep Review magazine, we shall carry a fuller tribute to our wise, passionate and tenacious friend who so strongly developed and protected NSP in NSW. • Hepatitis NSW. Owen’s passing has occurred just as we go to print. A further obituary will be carried in Edition 75.

Paediatric viral hepatitis clinic Hepatitis C and hepatitis B can be passed on from pregnant mother to baby and occur in unknown numbers in children.

Children with hep B and hep C are usually well and often unaware of their infection. Our Paediatric Viral Hepatitis Clinic will provide early diagnosis, monitoring, and in some cases treatment of children with these infections. Assessment and regular follow up is essential to provide optimal care for these children to reduce the risk of significant liver disease in later life.

Image via Google Images

For information, contact Janine Sawyer at The Children’s Hospital Westmead (CHW) on 98453989 or janines1@chw.edu.au

Hep Review

Edition 74

September 2011

my story

Two wheels from

Wellington

Darren Ellwood from regional NSW has taken on a mission to raise awareness about hep C. Writing for Hep Review, Peter Lavelle tells his story.

on’t fall asleep in the back of your car when your mates are inside the pub drinking.

That’s the tough lesson Darren Ellwood learned in 1975. The then 17-year-old who was living in Lalor Park in Sydney’s west, went out one night for a drive in his car with some mates who were older than him. Being too young to gain entry to the hotel, he was left in the car outside a pub while they went in for a drink. Tired and bored, he went to sleep in the back seat of his car. The next think he knew when he awoke, was he was trapped in the back seat. His mates had taken his car keys and taken the car for a drive – which ended abruptly when the car collided with two trees, two lamp posts and a bus shelter. Trapped in the back seat, Darren was bleeding profusely, but ambulance officers managed to transfuse him blood and free him from the wreckage. Unbeknownst to Darren, the blood – which in those days wasn’t screened for blood-borne viruses – was contaminated with hep C. Five years later a blood test detected the virus in his bloodstream. He delayed having treatment for 20 years but in 2001 decide to take the plunge. The treatment, 48 weeks of combined interferon and ribavirin, was tough going. The side effects were so severe that he had to give up his job running a caravan park at Lake Burrendong in Wellington in the west of NSW. However, helped by the fact he had genotype 3 (a genotype favourable to treatment) he eventually achieved a sustained viral response, ie a cure. But the whole experience left its mark on him. He and his partner at the time were totally unprepared for what the treatment would mean. “We broke up because of the treatment,” he says.

www.hep.org.au

“In retrospect, the doctors and medical staff at Dubbo hospital were excellent at treating the condition, but not much attention was paid to the effect that treatment would have on my family,” he says He was also unprepared for the negative reaction of his friends. He chose to be open about the fact he had hep C and was undergoing treatment, but this approach did not go down well in country NSW. “I lost all my friends, basically,” he says. At the time there was still a lot of fear and apprehension about AIDS and other blood-borne viruses thanks to the Grim Reaper television ads of the past, and stigma was widespread. “Anyone with hep C was immediately labelled a junkie,” he says. There was a lot of misinformation about how hep C was spread. “People would refuse to use cups and knives and forks, if they thought I’d used them,” he says. The experience would have led many people into denying the fact they had hep C, but it had precisely the opposite effect on Darren who was open about his hep C status since first being diagnosed. “I vowed that if I did get rid of it, I would do something about it, I wouldn’t be one of these people who pretended it never happened,” he says. He began by trying to research the experiences of other people who’d been through treatment. He found there wasn’t much in the way of organised support for people with hep C at the time in Australia. But he found a US online chat forum site called Delphi Forums where people with hep C could discuss their experiences and concerns with one another. He encouraged other Australians with hep C to join the site.

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Front

Then in January last year, a close friend rang him to say he’d just been diagnosed with liver cancer. Out of sympathy, to let his friend know that someone really did care, Darren walked from Wellington to Dubbo, a distance of 49 kilometres, as a means of drawing attention to hep C. His story of the walk was picked up by the local Wellington paper and helped raise awareness of hep C in the area. “That spurred me on to do even more,” he says. But sciatic pain in both legs from nerve damage following a motor vehicle accident made walking difficult so he decided a push bike was a better option. “I realised I could probably cover more distance on the bike,” he says. Since then, the 43-year-old has ridden from Wellington to Orange and back three times, and from Wellington to Dubbo and back three times. His latest ride in June this year took him from Wellington all the way to Sydney, where he was warmly welcomed by the team at Hepatitis NSW. Darren says the main motivation for the rides is to generate as much publicity as possible for hep C and to help de-stigmatise the condition, and encourage people onto treatment. He has been featured on local radio stations such as 2DU in Dubbo and ABC radio Central West; and local newspapers in Wellington, Dubbo, Orange and Bathurst have reported on his trips. He’s also been featured on local television stations. Many small businesses in the area, particularly local pharmacies, have helped sponsor his trips. He believes his efforts have born fruit. “Nursing staff at Dubbo hospital have told me they’ve seen

image by Pa Ba ul

H ckgro und im arvey. an increase in numbers Goog age via le Ima ges of people enquiring about treatment,” he says. A new hep C treatment centre at Bathurst Hospital has just opened and there is another one due to open at Orange Hospital, he says.

The efforts of people like Darren Ellwood are important because people with hep C in country areas have a harder time of it than do people in the cities with the condition. Travelling to treatment centres can mean a journey of hundreds of kilometres and it’s harder to get into to see doctors and nurses as they spend so much of their time on the road. The cost of travel is an additional factor for country people, says Darren. Another motivation behind the bike rides is to have something to tell his two young children when they’re older. “A lot of people have said to me, ‘how could you do this, and risk stigmatising yourself and your family?’ but I want my children to look back and say ‘my dad tried, he did something when no-one else wanted to touch it’“. Darren’s next ride will be from Sydney to Queensland in September. For more information, and to help sponsor him, call Darren on 0447 697 897 or visit his Facebook page. • Peter Lavelle is a freelance health writer who regularly contributes to Hep Review magazine: p.lavelle@optusnet.com.au NB: Thanks to Darren, more chemists in the Wellington region have become Hep Review distributors than any other area of regional NSW (see page 47). Hep Review

Edition 74

September 2011

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Preparing for treatme Hep C treatment can be tough, but perhaps not as hard as some people may believe. Cure rates have improved over the last 10 years and so has the way it is managed – these days there is more support and pre-treatment preparation, writes Adrian Rigg.

fter deciding to take on hep C treatment, the next question is when to do it. The time between making the decision and commencing treatment can be used to plan and prepare so that you can get the best outcome. Because treatment is not usually urgent, you have the relative luxury of choosing a good time to start.

Dallo started treatment in 2005, and recommends that people look at the short-tomedium-term future before considering it.

Thinking about treatment

“People need to have a genuine treatment window, and be helped to recognise or create one.”

Everyone experiences and tolerates side effects differently; no one should expect the worst or be scared off by horror stories, but you need to know what to expect. People who best know what treatment is like, and what you could do to help prepare, are those who have been through it. Calls to the Hepatitis Helpline are answered by people who can provide information about all aspects of hep C. They have the latest information at their fingertips, and can send out free resources. They can also possibly put you in contact with other people who have gone through the same experience. There are also online forums, such as hepcaustralasia.org and hepcaustralia.com.au where you can quickly and easily register for free, and join in discussions, ask questions of other forum users, or just read previous posts. This is a good way to share experiences in a nonjudgemental and non-confrontational way. After gathering information, it’s a good time to speak with your GP or clinician so that they can answer any questions and deal with your concerns. The FAQs on www.hep.org.au are a good place to start for information gathering. Timing is everything Hep C treatment can go on for a up to a year, and side effects can continue beyond this. It’s impossible to set aside a year when it’s guaranteed nothing major will happen in your life, but you can choose a time with no planned changes.

www.hep.org.au

“If people have plans for the near future, perhaps a trip overseas, or a wedding, or whatever, they may not be able to handle it during treatment and for many months afterwards,” says Dallo.

Having a stable, comfortable place to live and a support network is a good base. You may also need time off work for appointments, so some flexibility in employment is helpful. You don’t have to tell your employer or colleagues that you have hep C or are having treatment, but you could consider it if you think it will help them understand what you are going through. Plan how you might explain time off work; “I’m having treatment for liver disease,” enables you to indicate something is wrong without being specific and fully disclosing your hep C. Dr Max Hopwood’s report, 3D Project: Diagnosis, disclosure, discrimination and living with hepatitis C, is a good source for more information on disclosure. Julia is working full-time while undertaking treatment. “The big issues for me were working full-time and trying to sort out days off to coincide with injection days,” she says. “People should plan ahead to not use up all their leave days.” Altering work hours where possible can make things easier. Sue Mason, Hepatitis C Nurse Consultant at Royal Prince Alfred Hospital, encourages people to look at their current situation and find ways to work with it, rather than trying to avoid stress altogether. “Stress is often part of normal life,” she says. “People should ask themselves ‘Where’s the flexibility in what I have now?’”

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Image by soylentgreen23 via Flickr.com

ent: the nuts and bolts

Hep Review

Edition 74

September 2011

feature Alcohol

Preparing to avoid side effects

A recent research project1 as part of the Australian Chronic Hepatitis C Observational Study (ACHOS) set out to find the reasons that hep C treatment is deferred. It reported that issues around consumption of alcohol and other drugs were the greatest factors affecting commencement of treatment. This highlights the need for additional support in these areas; the study discusses strategies such as making support for drug and alcohol issues a part of the assessment for hep C treatment.

There are strategies to minimise treatment side effects; the more you know about this before starting treatment, the better.

Dr Richard Hallinan, Staff Specialist, Addiction Medicine, South Western Sydney Local Health Network, and The Byrne Surgery Redfern, believes that cutting out alcohol is the most important thing people with hep C can do, whether or not they are undertaking treatment. “It’s a really positive step, and that’s how I discuss it with people,” says Dr Hallinan. “It shouldn’t be seen as a negative, ‘you mustn’t do this’, but as something really good for you and your liver.” Alcohol directly affects the liver, and can complicate hep C infection by hastening liver scarring. Alcohol can make it harder to stick with treatment, and some side effects of treatment are made worse by alcohol, so people drinking alcohol do less well on treatment. For these reasons it is important to be completely open with your health professionals about your lifestyle, so that they can ensure you have appropriate support. If your GP thinks you need extra help to reduce your alcohol intake, they can refer you to a drug and alcohol specialist. There are anti-craving medications and psychological therapies which can be helpful. Dr Hallinan says that he has patients whose abstinence from alcohol has greatly improved their general health before, during and after treatment, even if they did not clear hep C. “If people aren’t able to start treatment at the moment for whatever reason, we work on helping them to stop drinking. I see it as a form of treatment in itself,” says Dr Hallinan. He also points out that drinking is not an absolute barrier to receiving treatment; people should discuss their individual case with their GP or specialist.

www.hep.org.au

“I think you cannot overstate the importance of reducing the impact of side effects by being prepared for, and dealing with, side effects that can be minimised or eliminated,” says Dallo. This means being aware of the reactions you may experience, such as appetite loss, rashes and insomnia, and having some strategies in place to deal with them; the sooner they are minimised, the easier it will be to continue treatment. Depression and mental health problems can arise during treatment, especially for people with a history of these. Ideally, health professionals will work together to deal with this in preparation for treatment, and prescribe anti-depressants, mood stabilisers or other medication if needed. It helps to be physically fit before beginning treatment, as the course can be demanding; this includes losing excess weight, eating a healthy diet and quitting smoking. Many people are less active during treatment, and it can take time after finishing to regain fitness. It is also useful to set aside time for relaxation and pursuing other interests, so that treatment doesn’t become allconsuming. “You have to stay focussed and not let treatment consume your thoughts,” says Julia. “It’s easy for it to take over your life so that everything revolves around hep C and treatment.”

Personal support If you live with other people, they may also need to know what’s involved in treatment, if only so they can cope with potential mood swings. It can be especially hard for partners to deal with depression or outbursts directed at them, and it’s helpful for them to be able to recognise early signs of depression so that they can be dealt with. Sue Mason helps prepare patients as much as possible by discussing what they may experience. “It’s good to do this with a support person or partner so they are clued in as well,“ says Sue. Recognising what others can do to help during this time is important; partners and housemates may be willing to do extra chores such as cleaning and shopping. While it is important for friends and partners to support someone going through treatment, it may also be good for them to have some outside support for themselves.

feature Professional support It is important to have a realistic idea of your chances of clearing hep C before starting treatment. Factors which influence this include your genotype, your age, the length of time you have had hep C and your current lifestyle. Dr Hallinan mentions that, with new more effective treatments emerging, it may be better for some people, especially those with genotype 1, to defer treatment. A fibroscan, a type of ultrasound to detect liver scarring, can help guide this decision; your GP can refer you to a specialist centre for this simple and painless test. Another major issue is knowing who to contact when you need help during treatment; sorting this out in advance saves time and energy in the long run. Julia says “Although everyone was really helpful when I did get in contact with them, I found it difficult to contact my specialist outside the monthly appointment, and I wasn’t sure if I could contact the nurse at the clinic as I wasn’t directly under her care.” You should also think about support after treatment has finished; you will no longer have regular contact with the treatment team but may still experience side effects and other problems. The Hepatitis Helpline may be able to help you find a good GP who can help with after-treatment care? Health professionals should be willing to discuss these issues at length. Even if you don’t clear your hep C after six months or a year of treatment and had the long break from alcohol that goes with it, will give your liver a rest, protect it and even reverse some amount of damage. For more information and advice about alcohol, phone the Alcohol and Drug Information Service on 9361 8000 or 1800 422 599 (outside Sydney). • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com

Gidding HF, Law MG, Amin J, Macdonald GA, Sasadeusz JJ, Jones TL, Strasser SI, George J, Dore, GJ. Predictors of deferral of treatment for hepatitis C infection in Australian clinics. Med J Aust 2011;194:398-402.

Image by jjay69, via Flickr.com

The 3D Project: http://tinyurl.com/3kn74tv

Hep Review

Edition 74

September 2011

obituary

Andy Hart 1959-2011

adly, Andy Hart passed away on 19 April this year, two weeks after his 51st birthday. Four weeks before Andy’s death, family, friends and colleagues came together for a celebration of his life at the iconic Penrith Panthers. During the evening Andy caught up with many people, performed with his band the Sick Zebras and recited his favourite poems from the English poet John Cooper Clarke (10 years in an open necked shirt). During the evening he was awarded “the Golden Beard Award” for his service to the field because “he gave a fit, disposed a fit and vended a fit” (over the years he had been the recipient of three NSW NSP Workers forum, golden fit awards).

PROJECT (1996), working with NUAA to target “Westies” in AIDS prevention. “If you wear black T-shirts with Megadeth on them, love heavy metal music and are proud to call yourself a Westie, Andy Hart wants your ear for a few minutes.” (Blacktown Advocate, 1996). During the TRIBES campaign Andy and NUAA produced a video, One Shot. Now a priceless artefact, the video is introduced by a much younger Andrew Denton, imploring drug users to use a new “fit for each hit”. Andy organised his biker networks to provide the club house setting and venue for the video as well as providing harm reduction information painted on a Harley Davidson.

Images, front and background, provided by Andy’s workmates.

He organised a bus to be painted, with the slogans “Speed thrills, a dirty needle kills” and “Hot car, hot night, wanna’ hit, clean fit” as well as a number of cartoons in popular motoring magazines. The grand finale was a rock concert featuring the 80s hit band, The Radiators. There were a lot “petrol heads” in western Sydney and Andy was one of them.

Andy was a man who had an opinion on everything and wasn’t afraid to share. Andy had a passion for harm reduction as he had spent the last 23 years of his working life in the field. In the early years Andy cut his teeth as an NSP worker and Manager in Western Sydney. Some of the highlights of this period were the TRIBES

www.hep.org.au

At the end of 2002 Andy resigned his post as Wentworth NSP Coordinator to set up his company, Vendafit. This was a brave and bold move, leaving the relative security of the public sector to carve out a niche business in the private sector. Up until his death Andy provided a fantastic service to many NSPs in NSW and the ACT. He was still fixing and installing vending machines and disposal bins up until a few weeks before he died. The business is continuing and maintaining the great service standard that we have all come to depend on. Vendafit now owns and operates 21 full service machines. Five in the ACT, four in South Australia, 10 in Greater Southern Area Health and two in South Eastern Sydney Illawarra Area Health Service. A major achievement due to Andy’s sheer commitment and dedication. We farewell Andy with the last verse from John Cooper Clarke’s, Kung Fu International, “Thanks to that embryonic Bruce Lee.. I’m a shadow of the person that I used to be I can’t go back to Salford.. the cops have got me marked Enter the Dragon.. Exit (Andy Hart) Johnny Clarke “ • Obituary provided by Andy’s Western Sydney work buddies.

heryl Burman (1952-2011) has passed away this week after a long battle with hep C. She was a long-time member of Hepatitis NSW; a volunteer, a committee member and a pastpresident. Cheryl was involved from back in the early days before we had government funding. She was a volunteer phone worker when the service ran from people’s own homes, their phone numbers being listed on a 1800 answer machine. We had committee meetings in people’s lounge rooms and our AGMs and public info nights were held in church halls. There were informal groups in Newcastle, the Central Coast, Sth Coast, Central West and Far North Coast. Cheryl was involved in supporting them all. She helped Leonie set up the first formal branch office outside Sydney - in Newcastle (staffed fully by local volunteers).

my feature story

The Little Book of Hep C Facts Do you know your basics about hep C? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep C Facts, Hepatitis C Council of South Australia.

As the organisation grew, Cheryl was an integral part of the team. She was warm, welcoming and inclusive; and politically connected. It may have been Cheryl’s Labor Party connections that got Andrew Refshauge, the then NSW Minister for Health, to visit our office and launch the first edition of our Hepatitis C: What You Need To Know booklet. It’s worth noting that no Health Minister has since visited our office.

• Hep C can be prevented by taking standard infection control precautions when blood is present

Along with others, Cheryl helped ensure that we developed long-lasting and rewarding relationships in the networks of health professionals and others with whom we worked. Lots of our work back then is hinted at in the ongoing column where we carry headlines from past editions 15 years past (see page 49). Way back then we were pushing for innovative goals: expanded and better funded NSPs; better access to treatment for everyone including access inside prisons and relaxation of treatment exclusion criteria; improved CES and Centrelink processes including DSP assessment tables; lobbying against patenting of HCV, etc. Cheryl was involved in it all.

• The most common symptoms of chronic hep C are fatigue, lethargy, nausea and discomfort around the liver

Now, she has fought her last good fight and the virus has taken her from us – but she will be remembered and missed by many.

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

• Hepatitis NSW

• Many people with hep C experience no symptoms • Symptoms, for people who do experience them, may not appear until 15 years or more after initial exposure

• The estimated number of people living with chronic hep C in NSW is close to 100,000 • Australia-wide, an estimated 218,000 people are living with chronic hep C • An estimated 9,700 Australians contract hep C each year - of which 7,275 people develop a chronic hep C infection • Hep C is the leading cause for liver transplants in Australia.

Hep Review

Edition 74

September 2011

Image by semireal_stock, via www.deviantart.com

obituary Cheryl Burman 1952-2011

Image by Jude Keogh via Central Western Daily.

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Hep C and Me

What do a devil and a yellow smiley-face minus a tooth? Charlie Stansfield, reports on an event at the Orange Regional Art Gallery.

he colourful images at the first “Hep C and Me” art exhibition at Orange Regional Gallery on World Hepatitis Day may at first glance seem unrelated, but scratch the surface and common themes emerge. Transformation, rebirth and rising above stigma. Regeneration, temptation and a 60s emoticon thrown in for good measure. The acrylic and pastel pieces were painted by a group of locals who know someone, work with someone, or are personally touched by hep C. They developed the works at a June workshop, funded by Hepatitis NSW and facilitated by a professional artist. Roisin Dyer, clinical nurse consultant who coordinated the workshops and exhibition, said that the pieces told real stories of living with hep C, with their power lying in their strength and honesty. The exhibition concluded a busy week of activities in Orange which included three healthy liver breakfasts held at Clinic 96 – a methadone clinic. The breakfasts were well attended by folk from the clinic, some bringing their families along, to share a community meal sourced from the 12 healthy liver foods (http://loveyourliver. com.au/). Given the early hour, broccoli wasn’t on the menu but the breakfasters did get through punnets of blueberries, oats and several kilos of yoghurt instead. Dyer, who is also the hep C treatment nurse for the Greater Western Area Health Service, used the breakfast and the exhibition to introduce herself to people who may be interested in treatment, and to raise awareness of the supports available.

www.hep.org.au

She believes that reducing the stigma of hep C is key to improving treatment take up and quality of life for people living with the virus. “It is hugely important for the wider community to recognise that hep C is not a faceless disease and to build a greater level of acceptance,” she said. Brett Wilson, who recently went through hep C treatment said the value in the art workshop and exhibition lay in the opportunity to meet others affected by the virus. “Even if you’re just sitting and painting you get talking about it all and might have a few laughs. There’s not much peer support in the country otherwise.” After getting through 12 months of treatment, he is now keen to use his experiences to help others in a similar situation. “I know a lot of ex-users and current users who don’t know about hep C treatment. Because of the stigma they don’t find it easy to talk about all that. It’s a lot better if you can talk to someone who has been there,” he said. Brett missed the healthy-liver breakfast, but his “gap-tooth-smiley-face shoulder-to-shoulderwith-a-devil” painting, was one of the more endearing pieces in the exhibition. The devilish smiley-face has been something of a totem for Brett during his journey through drug and alcohol rehabilitation and hep C treatment. But, tempting though it is, he says not to read too much into the imagery. “There was no real message behind it; I was just having a bit of fun!” • Charlie Stansfield is a freelance health writer who regularly contributes to Hep Review magazine: violettara@yahoo.com

feature

Hip hop for hep C The Northern Daily Leader newspaper showcases an innovative project – part of NSW Health’s Aboriginal hep C awareness campaign.

The statewide campaign aims to raise awareness about the prevention of the hep C virus, access to services, treatment options and support pathways for Aboriginal people. Resources including film clips, posters, songs and animations have been produced by young regional people during a three-day workshop this week at the Tamworth PCYC with the help of The Last Kinection, also known as Black Chili Productions. Participants took part in a number of activities to raise awareness about hep C and challenge the shame and stigma that surrounds it. A free community showcase, featuring the participants’ productions as well as a performance by The Last Kinection, was held in June. The resources produced during the workshops, to be held in nine communities throughout NSW, will be used as part of NSW Health’s hep C media campaign. Aboriginal Hep C Access Service Coordinator, Annie Slater, said she was pleased with the response from young people in the region to the arts-based approach. “It’s about getting the information, having fun and going back into the community as peer educators,” she said.

Image by Rob Chapel, via Northern Daily Leader.

oung people from Tamworth and Inverell are helping to produce resources for a hep C media campaign to be launched later in the year.

“It’s important that we challenge the shame and stigma associated with hep C and encourage people to access services for treatment and support.” Annie is one of nine coordinators in the state and was the first appointee, 12 months ago. The three-year project aims to close the gap to better support Aboriginal access to treatment and care services. • Abridged from northerndailyleader.com.au (30 June 2011) http://tinyurl.com/6ae8pmk The Aboriginal Health & Medical Research Council (AHMRC) are putting on hep C awareness workshops with The Last Kinection. The workshops will go for three days and you will get a chance to develop a poster, write and record a song and produce a video or animation. The workshops will travel across NSW starting in Griffith, Nambucca Valley, Grafton, Walgett, Newcastle and two workshops in Sydney. For more information about the campaign, visit www.loveyourliver.net.au/ or phone Harp Kalsi on (02) 9212 4777 or email hkalsi@ ahmrc.org.au

Hep Review

Edition 74

September 2011

feature

Cheques and balances: Navigating Centrelink payments can be a confusing path if you are living with chronic illness. Writing for Hep Review, Sue White tries to shed some light on the situation.

or Kerry Haddin, the impact of hep C on her ability to work fulltime eventually led her to Centrelink for support. “I went on Newstart to start with, but they kept asking me to increase my hours. I said I couldn’t, as I was too sick and I was getting too worn out,” says Kerry, who has osteoarthritis on top of her hep C cirrhosis. Navigating the rules of eligibility for payments isn’t Kerry’s forte. “It’s a bit of a jungle out there, you don’t know if you’re eligible or not before you go through the hoops to find out,” she says. Centrelink staff suggested that she apply for Disability Support Pension (DSP), a payment that would exempt her from work requirements on the weeks she was feeling incapacitated. With support from her doctor and other medical specialists such as her physiotherapist, Kerry was successful in getting DSP. It’s been a weight off her mind. “[Now I] don’t have to work at all if I can’t manage it. That’s the difference,” she says. While it’s a relief to have Centrelink’s job seeking requirements off her mind, Kerry is happiest when she is able to do regular hours.

Where do you start? The first step is understanding what you may be entitled to. “A person suffering from hepatitis or other liver illness may be eligible for any of the following income support payments: Disability Support Pension, Sickness Allowance, Newstart (Incapacitated) or Youth Allowance (Incapacitated). Centrelink assesses which payment is suitable based on the impact the condition has on the person’s ability to function,” says Centrelink General Manager Hank Jongen. Before you enter the system, it’s good to know Centrelink’s definitions about who is eligible for what services. Disability Support Pension assists if a person has a physical, intellectual or psychiatric impairment that prevents him or her from working 15 or more hours per week for at least the next two years. Sickness Allowance assists people if they are employed and temporarily unable to work due to a medical condition. In some situations full-time students may also be eligible. Sickness Allowance is not a long term payment. It is only paid because of a temporary incapacity to work or study.

“Because I need my mental state, I [try] to work. I’ll get depressed if I stay home,” she says.

Newstart Allowance assists people while they are looking for work and supports them to take part in activities that may increase their chances of finding work.

It’s not easy navigating Centrelink’s rules, but an additional challenge lies in the fact that many hep C clients have had vastly different experiences. Take a couple of examples from the hepCaustralasia.org online forum.

Youth Allowance provides assistance for young people who are studying, undertaking training and/ or looking for work. It may also provide assistance for young people who are ill or temporarily incapacitated.

Dallo found the process a nightmare. “People tell me of good experiences with Centrelink, but mine was just horrific,” he says.

If you’re on Youth Allowance or Newstart, and are temporarily too sick to work at least eight hours a week, you’ll need to apply for an exemption from your job seeking requirements. This basically means you’ll need a medical certificate.

For Murph, however, a long involvement with Centrelink navigating sickness benefits and eventually DSP was essentially positive... “I found the Centrelink staff I dealt with very sympathetic and supportive,” she said. Do you feel you need Centrelink assistance?

www.hep.org.au

“A job seeker must present a certificate from a medical practitioner. Under social security law, medical certificates must provide certain information to enable Centrelink to determine whether a temporary incapacity exemption can be granted,” says Jongen.

Hep Review

Edition 74

September 2011

Subject image by Pulpolux !!! via Flickr.com, background by Paul Harvey.

Centrelink and hep C feature

Image via Google Images

feature

“If an exemption has been granted, there is no requirement to attend a participation-related appointment or activity during the period of the exemption,” he says. If you fall sick on the day of a Centrelink scheduled activity (or an appointment with staff), just call your contact and tell him or her you can’t attend due to illness. “This will help to ensure...payments are not interrupted,” says Jongen. Regardless of the type of benefit you’re on, if you’re dealing with both Centrelink and hep C, you’ll want your doctor onside. Doctors write the allimportant medical certificates, and help explain your condition in terms the Centrelink system can accept. It’s a lesson Kerry learned early on. “You really need to a get a doctor who knows you and will support you through it. You probably wouldn’t get anywhere if they won’t back you up,” she says. “I had to go to the specialist and get certificates to prove what I have. I went through the process,” she says. While Kerry didn’t have issues getting the DSP, and in fact, it was Centrelink staff who suggested she should apply, she’s unclear as to the defining facts that made her eligible. Kerry has multiple conditions and is a single mum. “I didn’t have problems [getting DSP] as I had so many other problems, although many of them came from the hep C,” she says. Dr Bob Meehan is a GP with a special interest in opiate addiction. He has worked with a multitude of patients going through the DSP application process, including non-drug cases. “Asymptomatic hep C would not qualify for DSP in my opinion. [But] if they are significantly unwell with poor energy and liver pain or more severely unwell with ascites and oedema, then they would get DSP without having treatment,” he says. (Asymptomatic hep C is where someone has hep C but doesn’t feel ill.) His advice to patients with a significant disability from their illness is to begin by obtaining the DSP

www.hep.org.au

application kit. If they were his own patient, he would supply medical certificates that would support the case – where appropriate. “[I] would write a Centrelink Medical Certificate for three months (the longest interval they accept at one time until next review) indicating that the condition will last more than two years,” he says. If you are navigating the Centrelink impairment tables, which the DSP application kit will refer to, and currently require you to achieve 20 points to qualify, Murph’s advice may help. If you are having trouble navigating your way through Centrelink services and eligibility criteria, ask to contact one of their social workers who may be able to help. You could also contact the Welfare Rights Centre if you need extra help. “You can make up your 20 points from one or more conditions. I actually thought it was quite reasonable to make 20 points from hep C. This is what you need for 20 points: established chronic liver disease; symptoms (eg, persistent fatigue, nausea, abdominal pain) that may prevent or lead to avoidance of some daily tasks and simple tasks will usually aggravate symptoms of fatigue; most daily activities can be completed but only with some difficulty. You also need to demonstrate a continuing inability to work and the condition must be permanent (meaning lasting more than two years), and diagnosed, treated and stabilised according to Centrelink definitions. They are making it harder to qualify, especially for younger people,” she says. [The 20 points scoring is also explained further in the following page.] For Kerry, the outcome of the Centrelink process has been worth navigating now that the DSP means she only has to work as much as her health allows. “I’m working now [with aged care]. I put my focus on helping others... I have to pace myself [but]...I’ve got that worry off my mind now,” she says. For more information about hep C and Centrelink, contact the Welfare Rights Network: 9211 5268 or welfarerights@welfarerights.org.au

• Sue White is a freelance health writer who regularly contributes to Hep Review magazine:

s h t y m k n i l e r t Cen d e n i a l exp

feature

months a further six d n a , n o ti normal dura fter this the A 12 months . d te n ra g ay be ences in extension m rying experi a v apply. w ’s fe le a p o d e aske k guidelines e e iven p e w , -w k 3 n 1 li e tr at your h Cen anager, a for DSP th ri M l dealing wit te ri ra c e n a e it G w: Is nd stable? Centrelink Hep Revie lly treated a fu questions to e b st u m n. condition Hank Jonge ent for DSP qualify to h g u o red perman n e e d C si n p o e c h e g b iagnosed, w: Is havin st be fully d Jongen: To u ou need to y m o n d io e it Hep Revie c d n n e co r more ? What evid ely to last fo urposes, the pairment? k p li im d l a n c a si d y e you for DSP h fully is p d and stabil regarded as SP due to a te is a D e n r tr io fo it d fy n li o a c ave qu o years. The g to the nt options h e n tw ti n tm la a a e re th tr s le le b e usual ru re will ll reasona for hep C abilised if a nsidered the Jongen: Th s eligibility st o r’ c e is m o t. it n st d e u n c a m with or en ess of a provement, apacity Ass en undertak e assessment C im b l b a n Jo o . ti e c i. n t two t fu pplied recognised ithin the nex o significan a w n y t, e would be a b n b e d e tm n a g e nable tr Report si ed as A Medical ld be requir without reaso u o w r e n o ti cti nt. medical pra years. hysical, al impairme c si y h p ust have a p f m o n e o rs e n p o a o evidenc r DSP that lients can g To qualify fo sychiatric impairment been told c ? e n a ’v e e m W p is : r w o s th ables for Hep Revie intellectual under the T ”. What doe d ts te in a o it p c a 0 p 2 a ent c ast ted Impairm “Newstart In ment la attracts at le y e a -r p rk a o ’t n W is f pacitated pairment essment o Pension (Im is receiving the Ass ewstart Inca r N rt e : o k les p n e p e se u g S n b y o jo J es to the tab r, if a isabilit y g e D a v n r e a m h fo w y c o e : h th rs , e , h 2012] te to read y fall sick type as suc test/ on 1 January nce and the Tables). [No t y a c it w e v o ff ti ll e c A a to rt ir a in e e th lso be Newst ition must a ill likely com mption from d e w n x o e c n l a a d ic d te t’s me be gran ts. ust have a The claiman requiremen and they m n t o n e ti a n a ip ic rm e rt p pa yths around considered work. ar up the m le c s inability to t’ g e L in : u n w ti ? ie n d v o e e c w R o er a Hep assigned aft s. What’s all te ly a n o ic if is rt e g c n l ti ent ra medica st be person’s An impairm nce you mu ation of the a in w m o a ll x A e e ss v e si ry d from r Sickn comprehen r a tempora be compile o y F a . m b Jongen: Fo d jo n l a a e the tory o your usu ceiving first instanc medical his e re th is r In e unable to d s. m e his o rc when a cust a report from ariety of sou nce, v a ly a w p o p ll su A to incapacity th ou quested any other ith llowance, Y person is re gether with Payment w to g n r, Newstart A ti to n c re o a d P g n efit and have. aximum or her treati Special Ben ce they may n ents, the m e m id e v ir e a u , g q n in re o n support exempti participatio clearly To gain an to s. k le e b e a w n u 3 re unable to a 1 is rs n for e o ic rs ff e o p k period is e at th er is referred ntrelin th e e m C ’r y o y if If st e rt u e c th c e d st th n ligibility, er week a ent (JCA). doctor mu determine e ight hours p ctivity. city Assessm e a a p st a le a C b a le b it t Jo a su t en work ng in a ent of an an independ f participati sive assessm n e h rk and re p k n m li o incapable o e c is a ation in wo Centr is s ip h n ic T o rt ti a p p m e to x lp incapacity e ual’s barriers ssistance needed to he er a id ry v iv o ra c d o t p in a m th te s a r Fo ificate tions and capacity. rs medical cert the interven future work e. Job seeke d m n ti a a t t n can accept a e s rr k u ir c to 13 wee l improve the ther medica period of up o ith n a t n se re Centrelink w to p is s d th e e s ir id d v u e q e ro c re p x e o re mended y a The JCA als mer’s recom eir incapacit o th st u if c te e a th ic n if o acity. cert information ir work cap e th d n a . n g o n rati durati condition impairment se medical o h w rs e k e e b se ay lodg However, jo guidelines m ss e ln il s u o n initial satisfies seri ich covers a h w te a ic if rt e a medical c

Hep Hep Review Review Edition Edition74 74 September September2011 2011

Image via Go

ogle Images

Vein Care

www.hep.org.au

Hot and red

Swollen

Signs and symptoms of a DVT forming include the leg becoming:

Injecting into the femoral vein (or the veins of the leg) can cause a blood clot - a deep vein thrombosis - to form against the lining of the vein. These clots can be big and not stuck well to the side of the vein.

DVT (deep vein thrombosis)

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

Hep Review

Edition 74

September 2011

dial “000”

4 Ambos

The Hep Review harm reduction poster, Sept 2011 (#29). 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

dial “000”

4 Ambos

So, anyone who gets these symptoms should call an ambulance. Dial “000”

If they break off they can carry on up through the veins and get stuck in the lungs, causing pain, breathlessness and, possibly, heart attack and death.

Sore (especially in the calf).

opinion

Drug policy: the case for realism Realists want to see new forms of regulation based on the degree of potential harms and the wider implementation of harm reduction strategies, writes Geoff Gallop in The Age newspaper.

overnments acting on behalf of society have deemed the production, distribution and consumption of (some!) drugs to be unacceptable and the subject of criminal law. Add to this strong policing and public campaigns to discourage use and we have the “War on Drugs”. Although it is clear this war has not abolished the drug industry, the drug warriors say it is a justifiable use of public authority and resources because it sends a clear message about the dangers of drug use and acts as a disincentive for involvement in the different parts of the industry. In other words it constrains what might otherwise be an epidemic of drug use and abuse. At one level it is an argument based on values (“just say no to drugs”) and at another level an argument based on empirical claims (“criminalisation reduces use”). On the other side are the drug law reformers who are mostly libertarians or realists. Libertarians argue that individuals have the right to choose. Criminalising (or even regulating) the human desire of some to use drugs to achieve altered states of mind is an invasion of our rights. They say the market in drugs should be free, that is to say, drugs should be legalised. They are usually also supportive of the harm reduction approach, which pragmatically seeks to reduce harms associated with drug use. The realists, who are also harm reductionists, argue that such a desire has always been – and in all likelihood will always be – part of the human condition. However, they note the potential risks to the individual and the community from the use of some if not all drugs. They want to see new forms of regulation for production and distribution based on the degree of potential harms, the decriminalisation of use and the wider implementation of harm reduction strategies. They certainly don’t argue for a laissez-faire approach.

www.hep.org.au

This is where the “evidence” is so important. What are the consequences of decriminalisation of drug use? Does the tough approach work to constrain the industry as its supporters claim? If it does, are the results achieved in a manner acceptable to a civilised society and at a cost less than the alternatives? Realists have a battery of evidence on their side. Firstly, they point to the success of initiatives such as needle syringe programs, methadone treatment programs, and supervised injecting facilities. They show how they help drug users to stay alive, ensure better public amenity and reduce the transmission of blood-borne infections such as HIV. Secondly, they point to the cost effectiveness of these interventions compared to law and order enforcement. Returns on investment in needle syringe programs are particularly high. Thirdly, they can point to jurisdictions that have taken up decriminalisation without any concomitant expansion in drug use as was predicted by the opponents. Fourthly, they point to the real life consequences of the war on drugs as it affects drug users, their families and the wider community. Whether you look at it from a social welfare, human rights or public amenity point of view it’s not a pretty picture. If this is the evidence, one is led to ask – why have politicians not responded? Well to some extent in our own country they have, and that is why we now have evidence as to the effectiveness of localised harm reduction strategies (for example the Medically Supervised Injecting Centre in King’s Cross) and generalised programs (for example the needle and syringe program). However, it is true to say that most are still reluctant to take a comprehensive approach to drug law reform. People worry that easier

Image via Google Images

opinion

access to drugs – even if regulated – would add to rather than subtract from today’s major issue that is alcohol abuse. In respect of alcohol it is true that prohibition didn’t work, but enlightened regulation doesn’t seem to be all that effective either. This wall of worry makes it difficult for the evidence on the effectiveness of a comprehensive alternative to break through. Although not present in thinking about economics or international relations there remains a strong utopian and fundamentalist streak in our thinking – if not always in our practice – when it comes to drug policy. It is a search for simplicity in a world of complexity with the issue being viewed through the prism of individual cases (usually of tragedy) rather than population-wide statistics and cost-effectiveness studies. Note also the powerful and important belief in personal responsibility that underpins the judgements we make about human behaviour. Never far from the surface in arguments about drugs is the view that drug users only have themselves to blame if things go wrong.

This lack of sympathy leads to prejudice and stigmatisation and makes campaigning all that much harder for public health professionals seeking support and resources for harm reduction initiatives. However, the fact that the path of reform has many obstacles – continuing problems with alcohol and its regulation, the search for simplicity in a complex world of imperfection and the belief in personal responsibility often above all else and certainly before community obligation – this should not blind us to the case for continuing reform. The evidence is overwhelming so there must be a reform narrative that has the potential to survive the test of public opinion. • Abridged from theage.com.au (7 June 2011) http://tinyurl.com/69uk26x Geoff Gallop was the Premier of Western Australia from 2001 to 2006 and is professor and director of the Graduate School of Government, University of Sydney. Hep Review

Edition 74

September 2011

feature

All U need 2 do is ask

Don’t cuff yourse

elcome to another edition of All U Need To Do Is ASK. In this issue we are looking at the Health Survival Tips video. I would like to thank those of you who have taken the time to write in to Hep Review. I would like to see more of that happening. Thanks to Dougy who wrote a while ago. For privacy reasons I don’t mention surnames. I would be more than happy to receive letters on ideas and suggestions as to some of the issues you would like to see explored in this column. Health survival tips Education of inmates about the prevention and management of hep C, including treatment, is a fundamental, necessary and effective preventive intervention. Recently the Corrective Services Department in NSW has updated its resources and education provided by custodial facility health, welfare and education staff. The updated Health Survival Tips program includes a new DVD which provides a range of information on: • high risk behaviours (sharing any injecting equipment, tattooing and skin piercing) • communicable diseases (barriers, modes of transmission, prevention strategies) • how to clean injecting equipment (use of Fincol) • how to use Justice Health services

www.hep.org.au

• access to flu vaccine • cleaning up blood spills safely • testing • the liver • the Hepatitis Helpline • sexually transmitted diseases and treatments • general cleanliness – which is a big issue given the conditions inside prisons. In conjunction with the DVD is a facilitator’s guide and participant’s handbook for the barber training workshops. In reviewing these I found them to be not only up to date but also in a format that many Registered Training Organisations use in delivering accredited training. As a qualified trainer and running my own training and assessment business, I was impressed at the level of professionalism that had been put into these resources. The DVD has been set up so that offender services and programs, inmate peer support and corrective service industries and activities can facilitate the program, so there is no need for a detailed facilitator’s guide as is the case with accredited training programs. Health promotions began inside NSW prisons as the HIV/Health Promotion Unit which used to run regular peer support training for long term inmates. This is no longer the case with funding no longer available for this aspect of health promotion. This DVD project helps fill this gap.

elf

feature Health promotion and the DVD The prevention of blood-borne communicable diseases is part of Corrections NSW health promotion strategy. It is of concern to me as a former inmate, an inmate peer support worker and now secretary of the board of governance of Hepatitis NSW that this strategy does not include a peer support worker program to develop a body of inmates trained as peer support workers and employed in their centres to do just that. This is by no means an attack on CSNSW but rather the identification of a gap in their current strategy. I feel they should have used inmates rather than actors, as this is something that I saw straight through. An actor wearing greens pretending to be an inmate. Peer support workers would have been perfect candidates for such a program. The use of some terms in the DVD I found negative, such as “druggies”. I find this term offensive and judgmental. The claim of Hepatitis NSW resources being available in the library needs addressing, as this is not the case. Although some centre libraries may have a few resources most do not. Some AOD workers keep copies of this magazine. This is something that I believe Corrective Services can easily remedy by ordering the resources directly for the prison libraries. The DVD The DVD provides an easy to follow format with commentary and visual pop ups to read. However, this does not assist anyone who cannot read, so I would have liked to have seen more visuals. The visuals in the DVD are excellent. It would have been good to see more visuals alongside the pop ups. The explanations of jargon are very good. The use of a Justice Health nurse provided explanations on the different viral diseases – heps A, B and C, and HIV. The DVD presents a very good insight into blood-borne communicable diseases, the way they are transmitted, what they do and how to prevent and treat them. In particular the focus on hep C was very good.

The presentation provided statistics, information and options regarding treatment and modes of transmission. The options for treatment could have provided more information such as what hep C treatment involves. The discussion on the principles of viral transmission was very good with examples that are real. The discussion of substance use equipment was realistic; however, a visual demonstration would have been helpful. The HIV discussion was also very good, with an easy-to-follow explanation. The DVD provided the information in five parts, with space after each part allowing review and group discussion. The DVD then picks up where it left off, and each chapter leads into the next in an easy-to-follow format. Overall I was impressed with the DVD, its content, delivery and realism. I have critiqued some areas, which overall are minimal but I believe important. The DVD is a very good tool for induction, peer support training and, I also believe, staff training and awareness. The DVD’s harm minimisation information was accurate and useful. I would have liked to have seen a “how-to” on using the Prisons Hepatitis Helpline, for example, “enter your MIN and pin and then press number 2 for common calls list, then press 3 for the Helpline”. Overall I give it a 8/10 or **** four stars. 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. Thanks to Sue Henry-Edwards for her work and efforts in inmate health promotion. It is at this point I say see you next issue and please guys write in. Bobby B

Image, top left, provided for All you need 2 do is ask by Long Bay MSPC inmate.

Hep Review

Edition 74

September 2011

my story

Linda’s story: Making a W

hen I was 18, I fell in love with a man who made me laugh all the time. We were good mates, a great match. We got married when I was 21 and later had two sons. After the honeymoon stage, when he had been drinking heavily, my husband started to beat me up. I didn’t know he was using heroin during our marriage. People often question why I stayed in an abusive relationship. It’s not as simple as stay or go. At first I was in love with him, thought I could help him change. In those days in small town South Australia, no-one talked openly about domestic violence; it was a hidden subject. One or two friends listened, and gave me a place to stay if I ever had to get out of the house.

You have to do what it takes to get through this treatment. I found that taking it day by day, going with the flow, made it easier. Writing in a treatment journal helped keep things in perspective. I became quite a hermit in those days, but hey, I did go out now and then to a family get-together or special function, although it was hard to try and be socially ‘normal’. There was a group of friends and family that I couldn’t tell I was hep C positive, let alone on treatment, which was hard. I didn’t know some of them well enough at that stage, and I was worried they might assume things about me that weren’t true.

I came to realise that I couldn’t help him. I’d leave, he’d promise me that he had changed, and I’d go back for the sake of the kids. Of course, he hadn’t changed and his violence continued. One summer in the late 80s, I left town at midnight with the kids and never went back.

I didn’t have anyone around me with hep C then, nor did I know anyone who had done treatment. My doctors/specialists had never informed me that the Hep C Council existed or that they held support groups. Fortunately, I did have another great group of friends who understood what I was going through and they helped.

Ten years later, I was diagnosed with hep C. I had no risk factors. My hep C was the direct result of an exchange of blood between me and my ex. It’s a legacy of his violence.

The virus was undetectable during treatment. When it got to the final month, that last injection, I can’t tell you what a relief it was to finish. To know I’d done it.

I did treatment in February 2004 for 24 weeks. Almost immediately after the first shot, I was weak with flu-like symptoms and various aches and pains. A rash developed. I was lethargic and disorientated. I wasn’t working at the time, so I tried to rest as much as possible, and this made it easier. I had discussed treatment and organised support for my sons before I started treatment, so they knew what to expect. Having had a previous history of depression, I was also on antidepressants to help me manage the side-effects.

Some months later, I went to the specialist for another reason, and out of the blue, he said, “Oh yes and the virus is back”. My world came crashing down. I remember walking out of his office, crying, hiding my face from the people I passed in the hospital corridors. I reached the car park, got in my car and just sat there for a long time.

I remember one bad day I had to call my son at work, and ask him to come and help, because I was totally confused, walking round in circles at home, disorientated. I thought I was going mad and I just panicked. He came home, calmed me down, and I was able to get focused again and carry on. Anxiety passes eventually and after a while you learn to cope.

www.hep.org.au

I wouldn’t want to put anyone off though. Most people with genotype 3 do clear; it just happened that I didn’t. When the shock wore off, I became very angry that I had relapsed, and that I was back to living with the virus. I approached a lawyer, handed over all my documents and went for a victim of crime compensation claim. I wrote it all down – the whole story – just emptied my head of the memories. Three long years later, I won. That’s all I needed, recognition that I had contracted hep C from domestic violence. This is how I approach all of life’s challenges, I give them everything I’ve got.

my story

difference

I’m now getting ready for re-treatment – well, women have babies, it hurts like hell, but they do it again don’t they? I know what I’m in for. I’m not going into it uninformed and scared this time. I’m a strong person, always have been. I believe that I can deal with whatever life throws at me, and if I cannot get rid of the virus the second time, then I will just learn more on how best to live with it.

Linda ed by

I found the courage to do treatment again, partly from the members of my forums who were undergoing treatment and clearing. A valuable (medically trained) member of my forums has been researching insulin resistance for years, and she gave me studies that prove sustained viral response (SVR) is unlikely to happen if you are insulin resistant. I took this information to my specialist, got tested, and he agreed. I’ve had abnormal glucose levels for years and I was told I was ‘pre-diabetic’. I’m sure this is why I relapsed the first time. So, with a higher dose of Ribavirin and my insulin resistance under control, hopefully I will get that SVR!

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A couple of months went by and I found the Hep C Australasia site, run by the hepatitis organisations. So, I joined, and I now have good friendships with the members of that forum. I make sure information is shared between our two sites. It is important that I work with the hepatitis organisations; we’re all in this together for the same reasons.

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In early 2006, my son, a self-taught website designer, would see me sitting at the computer for hours on end, reading, researching information and chatting to others from overseas. One day he said, “Mum, come and look at this”, and showed me his design for an Australian Hepatitis C Support (AHCS) forum. I was speechless. Later that year we launched the website.

After that, I just got sick of hiding my status, and now I just don’t care anymore. I would rather tell a person what hep C is, and educate them, than not tell because I’m worried that they might think I’ve been a drug user. Anyway, if someone was a drug user, so what? No big deal, each to their own. Everyone has skeletons in their closets, noone can point a finger and put another person down. None of us deserves this virus however we live.

my story If you have an illness, you can’t rely on others to get all the information to you; you have to find it yourself. I have good research skills, and if I can’t find information, I will find someone who can. Listening and reading how other people cope is a must. By sharing, we learn and support each other. Through the forums, I want to provide an outlet for other people with hep C. I don’t want anyone to be living with this disease alone. It seems to me that I contracted hep C for a reason. It has led me to my purpose in life, which is to help other people. Even if I clear after retreatment, I will still be running the forums, looking after the website, and doing my best to support all the others who come along. In November 2009 I started 48 weeks of combo therapy and completed it in October 2010. I am now eight months post treatment, I can’t really write about my treatment experience just now, that will be another story I will tell later.

During this time, another old friend named Stephen Tulett wanted to help me; his son has a band called Super Florence Jam, and they wanted to come to Adelaide to play, but due to financial problems this couldn’t happen, so Stephen suggested that he could organise a sister hep C awareness fundraiser – named HepConcert – in Sydney at the Gaelic Club. I am so overwhelmed by Stephen’s generosity and kindness, he is a great friend. • Linda McInnes, 48, set up AHCS – Australian Hepatitis C Support www.hepcaustralia.com. au in July 2006. Linda’s story is abridged from Treatment, Life, Hep C & Me (see page 7), with a recently provided update. Also see page 45.

Image by Paul Harvey.

Over the years I have noticed that people with hep C didn’t have access to home support e.g. help with housework, gardening, shopping, transport, anything that could make their lives easier when they are ill.

I am now on a quest to raise awareness through a fundraising concert for hep C. I have organised a HepFest in Adelaide, at the Bridgeway Hotel, Pooraka. I started on this quest in January 2011, and now I have secured 10 bands to perform. With the help of many old friends, my dream has come true. I have utilised the AHCS forums, with the help of members and also Facebook to make this all happen. This ‘quest’ has worked, using a network of friends, and friends of friends.

40 www.hep.org.au www.hep.org.au

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HELLO HEPATITIS HELPLINE Hi. When I was at the doctor last week being checked for sexually transmitted infections (STIs), she tested me for hep A. Why would she do that? Should I be worried? Testing for hep A is quite a normal part of sexual health testing. The fact that your doctor ordered a test for hep A doesn’t necessarily mean that you should be concerned, but it might help if we talk a bit about what hep A is, how it’s passed on and the best ways to prevent it. Hep A is a virus that lives in poo and affects your liver. Compared to other countries, Australia doesn’t have much hep A; we usually have fewer than 500 cases reported each year, and they tend to happen in localised outbreaks. Hep A is spread in quite specific ways. The main risk factors are eating contaminated food (especially shellfish, like oysters), exposure through work (for example child minding or contact with sewage), travelling in countries where hep A is more common, household contact and sexual contact (specifically oral-anal sex, which is sometimes called rimming). Thankfully, the virus is easy to prevent; we can talk about that in a moment. Hep A is a short term illness. That means that most people who get it are only sick for a short time, and then they recover without any complications. It can be more serious in older people and people who already have another sort of hepatitis (eg. chronic hep C). It usually takes around four weeks to feel sick after exposure to hep A, and most people’s symptoms last for about three weeks or so (though it can take a few months before they feel completely well again). If you’ve had hep A before, you can’t get it again; you are immune.

“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.

Your doctor most likely tested you to see whether you are immune to hep A, not to see if you have the hep A virus itself. If you are immune, it might mean that you have had the virus in the past and recovered, or it might mean that you’ve been vaccinated. In any case, being immune means you are not at risk. If you’re not immune, the doctor can vaccinate you, so that you don’t have to worry about the virus in the future. The vaccination involves three needles over 12-18 months, and is sometimes given at the same time as hep B or typhoid vaccines. A combined hep A and B vaccine is commonly used so if you also need a hep B vaccine, using the combined version means you only need to have one course of injections. Aside from vaccination, one of the best ways to prevent hep A outbreaks is for everyone to make sure they wash their hands properly – with soap and warm water. That’s especially important after going to the toilet, before eating, before preparing food or drinks and after handling things that might have had contact with poo, like nappies and condoms. If you’re worried that you’ve come into contact with hep A (for example, through sexual or household contact), you can talk to your doctor about having an injection which can prevent your getting the virus. And of course, if you have any more questions about hep A, you’re more than welcome to call us again. Hepatitis Helpline

FERRAL. INFO. SUPPORT. RE CONFIDENTIAL

Hep Review

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September 2011

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Youth worker support kit raises awareness about hep transmission A

s part of NSW Hepatitis Awareness Week, the NSW Government launched the first ever support kit for youth workers to raise awareness among young people about viral hepatitis. Launching the kit, Parliamentary Secretary for Regional Health NSW, Melinda Pavey, MLC, said the kit contained information about the risks, consequences and choices of body art and drug use. “Many people do not realise that, because they use needles, their piercing and tattooing are methods by which hepatitis can be transmitted,” Ms Pavey said. “In particular, home tattooing with friends but without sterile equipment is placing young people at risk.” Hepatitis refers to inflammation of the liver, often caused by viral infection. Left untreated it can lead to serious health problems. Hepatitis NSW Executive Officer, Stuart Loveday, said despite the prevalence and seriousness of hepatitis, few people know that both hepatitis B and C can be managed and treated, and hep C can be cured.

Needle image via NSW Health, background by Scott West.

“That’s why awareness-raising tools like this Youth Worker Support Kit and testing for hepatitis are so important,” he said. The Youth and Health Worker Support Kit does not condone the use of illicit drugs. Rather it seeks to provide accurate information and tools to assist people working with youth to provide information about safer choices. The free Youth and Health Worker Support Kit will be distributed via local councils, youth support organisations, community health centres and is available online at www.hep.org.au • Hepatitis NSW 42 www.hep.org.au www.hep.org.au

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Untreated hep B to send our liver cancer rate soaring Deaths from liver cancer are liable to triple in the next decade, with the rise largely caused by untreated hep B infections, experts say.

ore than 50,000 Australians are thought to be unknowingly living with the bloodborne virus. Without treatment, the condition can progress to liver diseases including cirrhosis or cancer. Ben Cowie, from the Victorian Infectious Diseases Reference Laboratory, said liver cancer is the nation’s fastest growing cancer, with up to 80% of cases thought to be linked to chronic viral hepatitis. An estimated 1300 people died from liver cancer last year – a 17% rise since 2007 – outstripping deaths from cervical, brain and ovarian cancers. “There’s a concern here that liver cancer deaths are increasing very rapidly, particularly at a time when most other cancers are going backwards in terms of mortality rates,” Dr Cowie said. “The research suggests we’ll see a three-fold increase within the next 10 years. “There are now approximately 165,000 people living with chronic or long-term hep B in Australia and about a third of them don’t even know they’ve got it. We can prevent liver disease and liver cancer attributed to hepatitis B by increasing diagnoses and treatment, but only about 3% are receiving anti-viral treatment, which is a real problem,” he said. Broadcaster Derryn Hinch, who is waiting for a transplant as he battles liver cancer, blames his condition on a boozy past, but Dr Cowie said only about 10% of cases were linked to heavy drinking. Liver cancer can be prevented if hep B is diagnosed and treated early, but Helen McNeill, Hepatitis Victoria CEO, said poor screening and

Image by KAPOOKA BABY, via Flickr.com

ignorance about the virus meant many sufferers were finding out too late. Only 10-15% of people diagnosed with liver cancer are alive five years later. The rise in hep B can be partly blamed on an increase in immigration from countries where the virus is prevalent, such as in the AsiaPacific region. It is also common in Aboriginal communities. Most infections are transmitted from mother to child at birth, but it can also be passed between sexual partners. A lack of education and training for healthcare workers in detecting the virus has also been cited. Last year the federal government, in conjunction with state and territory health ministers, launched the first national hep B strategy. “There’s been a recognition from government that we need to do something about it and now we need the funding, because without that the strategy will fail,” Ms McNeill said. “I don’t care whether it’s the states and territories or the federal government that funds it, we just need someone to cough up the money.” A spokesman for federal Health Minister Nicola Roxon said the national strategy recognised one of the most critical prevention tools to combat the virus was immunisation and the vaccine was now provided free to babies at birth, two, and four months, and to children aged 10 to 13. • Abridged from smh.com.au (5 June 2011) http://tinyurl.com/6aeqmbg PS: Derrin Hinch received a liver transplant at Austin Hospital on 6 July 2011.

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September 2011

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Our writer, Charlie Stansfield, gets out and about during Awareness Week 2011 and reports on an art project organised by Parramatta Youth Services.

n the centre of a room at Parramatta Mission Youth Services there’s a head on a plate. The head has four faces. One bears a harmless expression, with a few bits of bling affixed to its eyebrows, face and nose. The others have festering lobes, bloody nostrils and puncture marks. There’s even a padlock through a cheek bone. The head gives the impression of a westernised Ganesh; albeit one that’s lost its elephant trunk and woke up on a bed of nails. The sculpture entitled “The Good, The Bad and The Infected” was the idea of Ash Castro, a youth worker from Parramatta Mission who rose to the challenge to make hepatitis interesting to young people. “The bad and the infected are the faces of bedroom piercings where kids try a do-it-yourself approach to piercing often with a shared needle at home,” Ash said at a public barbeque launching the sculpture on 29 July. Lack of knowledge about transmission makes some young people more vulnerable to hep C, and being under-25 can mean health-related issues are too far off in the future to worry about. In any case when you’re young you’re invincible, right? According to Ash, others he works with have more pressing priorities such as where they’re going to sleep or whether they’re going to get any dinner, so there’s low to zero interest in learning about risk factors. So by combining what does invite interest – piercings and body art – with an ‘out there’ activity, like building a four-faced papier-maché sculpture, hep C education is given in a fun way. Ash collected

www.hep.org.au

together a small group of 14-16 year old ‘artists’ and set about working on the sculpture in the lead up to World Hepatitis Day. As they began to depict the bad and the ugly results of bedroom piercings with blood-red paint, they found themselves learning more about the hidden risks of letting one of your mates perforate your eyebrow for free. A range of other local youth services and a dozen or so young people attended the barbeque launch. In a nice contrast to the ‘bad and ugly’, Aaron Murray, a professional body piercer was on hand to explain how piercing should be done using new gloves, swabs and a fresh needle for each customer. Aaron regaled a group of young people, youth workers and this squeamish reviewer with graphic stories of his craft, including explanations of dermal piercing which involves strips of metal inserted under the skin. Even done safely, it can hurt like hell. Did the message about safe piercing practices get across to young people attending the event? Amber, 16, said she took her health very seriously “I might have done unsafe stuff in the past, but I would never do it now.” And, if a friend was talking about getting a bedroom piercing? Skye, 16, said “I’d just laugh and tell them they were totally stupid.” • Charlie Stansfield is a freelance health writer who regularly contributes to Hep Review magazine: violettara@yahoo.com

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Hep Review

Edition 74

September 2011

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Children can have hep C too

Tens of thousands of women in NSW have contracted hep C and then had babies. With around one in 15 passing on their hep C, there could be up to 2500 children in NSW living with the condition, writes Janine Sawyer.

epatitis C virus (HCV) is a slow-acting virus that causes liver inflammation and disease. It is spread through blood to blood contact with someone who already has hep C. About 80% of infections have occurred as a result of people sharing equipment used to inject illicit drugs. Transmission can also occur though people using contaminated tattooing/piercing equipment or medical equipment, through blood transfusions in countries with high rates of hep C or exposure to other peopleâ&#x20AC;&#x2122;s blood. There is another way however that you can contract hep C and that is by vertical transmission â&#x20AC;&#x201C; also known as mother-to-child or perinatal transmission. Vertical transmission occurs around the time of delivery of the baby and occurs in around seven babies per 100 babies born to mothers who are hep C PCR positive. In NSW, women represent about 40% of people with hep C and many of these women are in their reproductive years, and so it is good to know if you have hep C if you are having or have had a baby. If you have hep C, it is a good idea to have your child tested to see if they have hep C, so that they can be referred to specialist childrenâ&#x20AC;&#x2122;s doctors who can care and manage their virus. There are two types of blood test that can be done to see if your child has hep C. The HCV RNA (PCR) test can be done from two months of age. This detects the presence of the hep C virus in the blood. A follow-up hep C antibody test is best done at 18 months of age. This shows exposure to the virus but it does not measure the amount of the virus. 46

www.hep.org.au

The majority of children with hep C grow and develop as other children do, and as in adults with hep C, in the early years they have no outward signs or symptoms that they have hep C. Approximately 8-20% of children with hep C will clear the virus spontaneously; this usually happens by the age of three and sometimes up until the age of seven. However, some children can develop liver disease as they get into their second and third decade of life and this is an important reason for finding out if your child has hep C. They will then have the information and knowledge to look after themselves and avoid further damage to their liver such as healthy eating, minimising alcohol intake, being fully immunised and also to educate them on ways to prevent spreading the virus to other people. It is important to mention that there is no law that requires you to tell anyone your child has hep C and this includes schools, sport coaches, family and friends; however, it is a good idea to tell your GP so that they can offer you medical support and care. Be aware, that hep C can attract stigma and discrimination from people, including health care workers. Remember that you and your child are entitled to professional, non-judgemental care by health professionals.

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Hep Review community distribution O

ver the last couple of months, we’ve been promoting the Hep Review to chemists and newsagents across NSW. Congratulations and thanks to our team of volunteers who have handled the campaign.

Image by HaniSham™ via Flickr.com

We’ve so far covered Northern Rivers, Central West, Illawarra, Hunter and Sydney metro regions. Over 80 shops, mainly chemists, have agreed to place one of our display boxes (see below). This has enabled distribution of over 5,000 copies of Hep Review into the general community.

When your child has hep C they will visit the paediatric liver doctor every 6-12 months, the doctor will examine your child and they will have a blood test. Some children have been treated in NSW from the age of nine years old and up, they are carefully assessed to ensure they are ready for treatment. When your child is old enough the specialist will discuss with you and your child the option of treatment. Our experience shows that, while children have side effects from the treatment, they appear to be less severe than the adults; all children have attended school and continue to participate in their after school activities.

We hope that you – as a reader – will be able to support the project by choosing to shop at those chemists and newsagents who have come onboard (Rose Bay North Newsagency, shown below). To check out which shops are involved, visit our Hep Review distribution project webpage... http://tinyurl.com/3kgy9aq

Image by Paul Harvey.

The services offered in NSW for children with hep C are at the three major children’s hospitals located at Randwick, Westmead and Newcastle. If you have any questions or would like further information, call 02 9845 3999 and ask for the Viral Hepatitis Nurse or email kidshepbcinfo@chw.edu.au • Janine Sawyer is a Clinical Nurse Specialist in Viral Hepatitis in the Department of Gastroenterology at The Children’s Hospital at Westmead. Hep Review

Edition 74

September 2011

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Bathurst’s new hepatitis clinic

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 SEPTEMBER EDITION OF MEMBER NEWS, READ ABOUT: • Prizes for our early bird members have been a special bonus this year and those members who were fortunate to be recipients were all very pleased. • Calling all Zeros…If you are a Zero Fee member and have not renewed for this year, please be aware that our new 3-year renewal is not automatic – you need to hop online or mail your membership form to kick off the cycle. • Hepatitis NSW sponsored scholarships to the Brisbane conference are on offer to currently financial members in our zero fee, concessional and waged membership categories living in NSW. Please read your copy of Member News Ed 73 (June 2011) which supplied details of how to apply for one of two scholarships that HNSW is pleased to offer. The National Hepatitis Health Promotion conference in Brisbane is set for 24-25 November 2011. Our scholarships cover registration fees, transport, accommodation and meals. Please ensure your application letter reaches us by 30 September. • Notice of AGM and call for Board of Governance nominations: Hepatitis NSW Annual General Meeting will be held later in November this year. Separately we will forward you the Notice of AGM and call for Board of Governance nominations. Notice will also be on our website. This year we will celebrate our 20th anniversary so plans for our AGM will be rather special. Included in the celebrations will be our 5th annual Audrey Lamb Community Forum. Please watch for further information. • Information update session for members: please join us for an information session covering hepatitis basics and insight into areas of development in the hep C field. Come along for a refresher, an update or to revisit the basics. This evening will be for members of Hepatitis NSW and will be held at our offices on Thursday 20 October (5:00 – 6:30). 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! Want to receive Member News? Become a member of Hepatitis NSW

A historical perspective – October 1996 Headlines from 15 years ago... • Disability Support Pension outrage averted for now • 12 months interferon shown to work best • New CES guidelines adopted • National peak body for hepatitis C • Hepatitis C and diet – what are the issues? • Diet and liver disease • Disposing of fits • Thinking of penetrating your skin • Kendall Centre revisted • The Liver Cleansing Diet (book review) 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 16, October, 1996.

Continued from page 3. The other school of clinical thought argues against recommending treatment for all children with hep C. Their reasons are equally valid. Why put a child through a potentially arduous treatment regime when it’s not even known whether, left untreated, hep C related liver disease is likely to progress? Hepatitis NSW works with a wide range of clinicians. We are currently providing input to a welcome initiative led by the Children’s Hospital at Westmead in Western Sydney that will contribute to planning for better health management and treatment for children with hep C. Clearly opportunities and barriers exist. The biggest hurdle to young people and children with hep C accessing treatment remains the Pharmaceutical Benefits Scheme’s S100 requirement for funded therapy to be accessed only by adults 18 years or older. • Hepatitis NSW

Hep Review

Edition 74

September 2011

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hep C bookmarks O

ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

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Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990). • Hepatitis NSW

join us Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)

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Hep C Helpline (see over)

www.hep.org.au

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Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. is C Hepatitis People with hep C come from all bac . kgr catch oun hard to ds. accurately ass You can’t ume anythin about them. g It is not transmitted by who e someon Hep C is ver touching y diffi cult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid bloodsame knives and forks. to-blood con tact with oth er people, you are not at risk. It is transmitted when So if infected blood from one hep you find out someone has C, support the person gets into the m and don discriminate against them. ’t bloodstream of someone else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)

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Hep Review

Edition 74

September 2011

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.

Genetically humanised hep C mouse developed

Stones shown to be hep C breeding grounds

USA – The first genetically humanised mouse model for hep C has been created by scientists at Rockefeller University and The Scripps Research Institute.

Pakistan – This study looked into the role of potash alum stones in hep C transmission at barber shops in Pakistan. [Potash alum is commonly used in water purification, leather tanning, fireproof textiles and baking powder. It also has cosmetic uses as a deodorant and as an aftershave treatment.]

The achievement will enable researchers to test molecules that block entry of the hep C virus into cells as well as potential vaccine candidates. The new mouse model is the first to be developed with a fully functioning immune system. “Our genetically humanised mouse model for hep C will allow us to gain deeper insights in the biology of this important pathogen,” said senior author Alexander Ploss, a research assistant professor at Rockefeller. “This robust small animal model also has the potential to serve a critical role in testing and prioritising drug and vaccine candidates. Results from these tests can potentially guide more expensive pre-clinical and clinical studies in higher order organisms, including humans,” he said. The finding has been reported in the June 9 issue of the journal Nature. • Abridged from medindia.net (11 June 2011) http://tinyurl.com/5w5pyfm

In Pakistan, most hep C positive patients have a history of facial/armpit shaving from barbers. Nearly 80% of barbers are rubbing potash alum stones on facial shaving cuts. Dark blood spots are analysed on potash alum stones being used at different barber shops. The aim of the study was to check the viability of hep C virus on potash alum stones being used at barber shops. Blood samples from HCV positive patients were taken and treated with 0.1, 0.2, 0.3, 0.4 and 0.5 molar concentrations of potash alum for different periods of time. Blood was centrifuged to isolate the serum; HCV RNA was extracted from serum and subjected to first strand synthesis and PCR. PCR fragments were confirmed by sequencing. PCR amplification was observed in all the samples, treated with different concentrations of potash alum, indicated that the virus remains alive on potash alum stone for a long period of time. The researchers concluded that potash alum being used by barbers on facial shaving cuts has definite role in hep C transmission in Pakistani population. Therefore, use of potash alum stone should be banned on facial shaving cuts at barber shops. • Abridged from 7thspace.com (9 May 2011) http://tinyurl.com/5w3zotq

www.hep.org.au

research updates Predictors for hep C treatment Factors associated with in Australian clinics specialist assessment and Australia – This study aimed to determine uptake treatment for hep C in NSW of treatment for hep C virus (HCV) infection and predictors of deferral of treatment for HCV by using prospectively collected data from the Australian Chronic Hepatitis C Observational Study (ACHOS).

Design, patients and setting: Cohort study involving interview and medical record review at enrolment and routine follow-up clinic visits of patients with chronic HCV and compensated liver disease attending a national network of 24 HCV clinics between April 2008 and December 2009. Eligible patients were those who had not been previously treated, were enrolled within six months of their first clinic visit, were eligible for treatment and had been enrolled for at least six months. Main outcome measure: Predictors of patients undergoing HCV treatment within the first six months of assessment. Results: 1239 patients were enrolled in ACHOS, of whom 406 met the criteria for inclusion in the subcohort for this study. Among this subcohort, 171 (42%) received treatment within 6 months of their first clinic visit. Current injecting drug use, past and current treatment for drug dependency and alcohol use above 20 g/day were independent predictors of deferral of treatment. At least one of these factors applied to 41% of the subcohort. Clinical factors, including HCV genotype, HCV RNA level, and stage of liver disease were not associated with deferral of treatment for HCV. Conclusion: Factors related to drug and alcohol use, rather than clinical factors, influenced uptake of treatment for HCV. Further support for patients with drug and alcohol dependency is required to optimise treatment uptake. •

Australia – Assessment and treatment for hep C in the community remains low. We evaluated factors associated with hep C specialist assessment and treatment in a cross-sectional study to evaluate treatment considerations in a sample of 634 participants with self-reported HCV infection in New South Wales, Australia. Participants having received hep C specialist assessment (n=294, 46%) were more likely to be have been older (vs <35 years), have greater social support, HCV-related/attributed symptoms, a diagnosis of cirrhosis, have asked for treatment information, have greater HCV knowledge, have been advised by a doctor to go onto treatment, and less likely to be receiving opiate substitution therapy and never to have seen a general practitioner. Participants having received hep C treatment (n=154, 24%) were more likely to have greater fibrosis, greater HCV knowledge, know someone who has died from HCV, been told by a doctor to go onto treatment, were less likely to have been female, have recently injected and be receiving opiate substitution therapy. These data identify modifiable patient, provider and systems-level barriers associated with hep C assessment and treatment in the community are what could be addressed by targeted interventions. Factors associated with specialist assessment and treatment for hepatitis C virus infection in New South Wales, Australia. Grebely J, et al. Journal of Viral Hepatitis. Vol 18, Issue 4, pages e104–e116 • Abridged from http://tinyurl.com/43dw3jv

Predictors of deferral of treatment for hepatitis C infection in Australian clinics. Gidding HF and Law MG. MJA 2011; 194: 398–402

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research updates US public supports universal hep C screening

US age-based hep C screening

USA – A new study indicates that people support universal screening for hep C, even in the absence of prior consent or communication of negative results. The study was published online in BMC Infectious Diseases.

USA – A targeted, age-based screening program would result in 59,000 fewer deaths associated with hep C and advanced liver disease, compared with the current risk-based screening program, based on statistical modelling.

Between 2.9 and 3.7 million people in the United States have hep C, and about 70% are unaware of it. Current screening guidelines direct physicians to screen patients when they have one or more risk factors, such as injected drug use, having received a blood transfusion before 1992 or elevated liver function tests.

Under current US screening practices, “people with no risk factors might not get screened,” said Dr Zobair Younossi of the Inova Health System in Fairfax, Virginia.

Researchers from the University of Washington, Seattle, conducted a survey at outpatient clinics of a major public urban medical centre in Seattle. Two hundred of 233 patients surveyed provided a response. The survey included three options: universal testing without being informed of the test or being told of negative results (48% preferred this option); testing with an opportunity to opt out, and without being informed of negative results (37% preferred); and testing based on clinician judgment (15% preferred). “Patients appear to place a higher priority on being tested than they do on the process of informed consent or the receipt of negative results. These findings should inform the priorities of clinicians, public health officials, and clinical risk managers,” the authors conclude. Dr Coffin’s work is supported by a grant from the National Institute of Allergy and Infectious Diseases. The authors have disclosed no relevant financial relationships. • Abridged from medscape.com (20 June 2011) http://tinyurl.com/6z8gv2o It should be noted that in Australia, most people living with chronic hep C have already been diagnosed. This is thanks to Australia’s very effective public health system and long running approach to hep C screening – focused on offering testing based on people’s risk background and behaviours.

Individuals with hep C may not show symptoms until decades after they have been infected, he noted. Dr Younossi and colleagues used a Markov model of the natural history of the infection and its complications. They applied the model to a population of approximately 102 million individuals who were eligible for screening, and found that the birth cohort screening (BCS) strategy would result in 59,000 fewer deaths related to HCV infection and 106,000 fewer cases of advanced liver disease, compared with the current risk-based screening (RBS) strategy. The investigators designed a mathematical model using a birth cohort of individuals who were born in the United States in 1946-1970. They estimated the current hep C status and stage of disease progression using a run-in period from 1964 to 2010, as well as using ageand sex-based rates of infection, progression, and spontaneous clearance. BCS involved the assumption that 100% of the cohort would be screened within the first 5 years, starting in 2010. The model suggested that BCS would cost approximately $25,000 for each additional quality-adjusted year of life gained. BCS would cost more overall than RBS ($45.1 billion vs. 32.0 billion), but BCS would yield lower costs related to advanced liver disease ($21.7 billion vs. $25.8 billion), Dr Younossi said. The up-front investment could be worthwhile in terms of reducing longterm medical costs, he said. “There are better hep C treatments in development that could increase the benefits of screening,” Dr Younossi said. Effective screening for hep C now may reduce future costs to Medicare, he added. • Abridged from internalmedicinenews.com (8 May 2011) http://tinyurl.com/68hlf24

www.hep.org.au

research updates All-cause mortality higher with hep C

Hep C treatment for people on pharmacotherapy

USA – Chronic hep C doubles the normal risk of dying early from any cause, a new study shows. The higher risk persists even after accounting for liver-related morbidity, the study team reported.

Australia – Australian researchers undertook a non-randomised, open-label study to evaluate the efficacy, safety, and adherence to hep C therapy in patients receiving opioid replacement therapy and attending four tertiary hospital hepatitis clinics in Australia.

Dr El-Kamary, of the University of Maryland School of Medicine in Baltimore, and colleagues used the Third National Health and Nutrition Examination Survey (NHANES III) to analyse liverrelated and non-liver-related mortality among 16,509 hep C positive individuals ages 17 and older in the general US population. Hep C status was assessed from 1988 to 1994, with follow-up through 2006. During a median of 14.3 years, 3853 deaths occurred. Death rates were highest in those with chronic hep C and lowest in the hep C negative “control” individuals. In a subset of 9378 participants, after adjusting for all factors, hep C positive status was associated with a 2.11 higher all-cause mortality rate compared with hep C negative status. Chronic hep C status was linked with a 2.37-fold higher all-cause mortality rate. Hep C antibody positive individuals and chronic (PCR positive) individuals also had a roughly 20-fold and 26-fold higher rate of liver-related mortality, respectively. “This study suggests that mortality among hep C positive individuals in the general US population is higher than previously described,” the authors note. The question is, can hep C treatment mitigate the lifespan hit imposed by HCV infection? “We know that among those with liver disease, successful treatment definitely improves patients’ survival. However, since HCV therapy is almost exclusively offered to those with liver disease, little is known about the impact on those without liver disease. We hope that this study will encourage others to evaluate the impact of treatment on hep C patients without liver disease,” said Dr El-Kamary. • Abridged from hepatitiscresearchandnewsupdates.blogspot (21 June 2011) http://tinyurl.com/6fqfmto

The 53 participants were treated with pegylated interferon and weight-based ribavirin for 24 weeks (genotype non-1, n=31) or 48 weeks (genotype 1, n=22). The patients were monitored for virological response, adverse events, and adherence to treatment. Two validated instruments, the Mini International Neuropsychiatric Interview and the Beck Depression Interview, were used before and throughout the study to screen for psychiatric illness. The group’s overall sustained virological response was 57% (71% for genotype non-1, and 36% for genotype 1). The SVR rate was similar for active injectors (63%) and noninjectors (53%). Patients’ psychological profile, as evaluated by the validated instruments, did not change on therapy. “The pattern and frequency of adverse effects were comparable to non-opioid replacement patients,” the authors wrote. According to 80/80/80 criteria (receiving at least 80% of the prescribed interferon, 80% of prescribed ribavirin, and remaining in treatment for at least 80% of the planned duration) 85% of patients were classified as adherent. Only two individuals who had an end-of-treatment response relapsed, one of whom was not an active injector. The researchers concluded that patients on opioid replacement therapy, even if they continue to inject actively, can achieve comparable SVR rates to other populations with pegylated interferon and ribavirin therapy, suffer no excess rates of adverse effects or psychological complications, and have good adherence to therapy. • Abridged from thebody.com (20 May 2011) http://tinyurl.com/6baj2fa

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September 2011

research updates DEPDC5 hep C liver cancer gene discovered

Coffee and hep C treatment response

Japan – A genome-wide study by researchers at the RIKEN Centre for Genomic Medicine, Hiroshima University Hospital and SapporoKosei General Hospital has identified a genetic variant associated with the development of liver cancer in people with chronic hep C. The findings are based on a study of 3312 Japanese individuals and appear in the journal Nature Genetics.

USA – Coffee consumption has been associated with reduced progression of pre-existing liver diseases and lower risk of hepatocellular carcinoma. However, its relationship with therapy for hep C has not been evaluated.

Hepatocellular Carcinoma (HCC), the most common type of liver cancer, is the third leading cancer-related cause of death and the seventh most common form of cancer worldwide. Hep C is the main risk factor for HCC in Japan, where of the more than 30,000 deaths each year from HCC, 70% involve hep C. To identify risk factors connecting hep C and HCC, the research group conducted a genome-wide study on a group of 3,312 Japanese individuals with chronic hep C. Analysing a total of 467,538 genetic markers (called single nucleotide polymorphisms or SNPs) in a group of 212 people with hep C and HCC and 765 people with hep C but without HCC, the group uncovered one SNP associated with HCC risk, located on a gene called DEPDC5. The association was confirmed in an independent replication study on a population of 2335 people with hep C, 710 with HCC and 1625 without HCC. The significance of the findings was further highlighted when the researchers adjusted their results for gender, age and platelet count, revealing that among Japanese individuals with chronic hep C, the DEPDC5 SNP roughly doubles the odds of developing HCC. While deepening our understanding of the mechanisms triggering HCC, the discovery of the DEPDC5 SNP locus also provides a valuable target for new therapy techniques, promising progress in the ongoing battle to overcome one of the world’s most deadly cancers. • Abridged from pharmabiz.com (5 July 2011) http://tinyurl.com/5tpcry6

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Patients (n=885) from the lead-in phase of the Hepatitis C Antiviral Long-Term Treatment Against Cirrhosis Trial recorded coffee intake before retreatment with peginterferon (180 μg/wk) and ribavirin (1000–1200 mg/day). We assessed patients for early virologic response (2 log10 reduction in level of HCV RNA at week 12; n=466), and undetectable HCV RNA at weeks 20 (n=320), 48 (end of treatment, n=284), and 72 (sustained virologic response; n=157). Median log10 drop from baseline to week 20 was 2.0 among nondrinkers and 4.0 among patients that drank three or more cups/day of coffee. After adjustment for age, race/ethnicity, sex, alcohol, cirrhosis, ratio of aspartate aminotransferase to alanine aminotransferase, the IL28B polymorphism, dose reduction of peginterferon, and other co-variates, odds ratios for drinking three or more cups/day vs nondrinking were 2.0 for early virologic response, 2.1 for end of treatment, and 1.8 for sustained virologic response. The overall conclusion was that consumption of coffee (more than three cups per day) is an independent predictor of improved virologic response to peginterferon plus ribavirin in patients with hep C. Coffee consumption is associated with response to peginterferon and ribavirin therapy in patients with chronic hepatitis C. Freedman ND, et al. Gastroenterology. 2011;140(7):1961-1969 • Abridged from medscape.com (24 June 2011) http://tinyurl.com/6dh3ful

research updates Hep C knowledge among NSW Egyptian community

Language backgrounds of Australian hep B

Australia – This research on hep C was conducted as part of a community development project implemented by Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) among the Egyptian community in NSW. The project used a range of strategies designed to increase knowledge and raise awareness of hep C prevention, testing, and treatment among a population at high risk of hep C-related liver disease. This exploratory, twophase study was designed to gauge changes in community awareness, knowledge, attitudes and perceptions of hep C transmission, prevention, treatment options and health practices.

Australia – The prevalence of chronic hep B infection is increasing in Australia, and most affected individuals were born overseas. Estimating the English literacy of predominantly affected populations and determining the languages other than English (LOTE) spoken is essential for the development of appropriate resources.

The data illustrates that knowledge around routes of transmission is inconsistent and emphasises the importance of increasing awareness of transmission routes of hep C. There is a need for culturally appropriate health promotion materials in Arabic developed in consultation with the communities themselves. These should be designed with messages for populations like the Egyptians, who may have acquired hep C through atypical routes of transmission, and should be made available at general practitioners, especially those of Egyptian background. An awareness of options around hep C treatment is imperative to both increase numbers of people accessing hep C treatment and to prevent late presentation when treatment is less effective. This study strengthens the findings of previous research that knowledge of transmission and treatment of hep C among migrant communities is poor and emphasises the need for further research concerning culturally appropriate hep C interventions and information. Initiatives such as the community development project run by MHAHS are an important step in raising awareness of hep C in this priority community. An exploratory study of knowledge and awareness of hepatitis C in the Egyptian community in NSW. Multicultural HIV/AIDS & hepatitis C Service and National Centre in HIV Social Research, Nov 2010. • Abridged from multiculturalhivhepc.net.au via http://tinyurl.com/3kddy2l

Data from the Australian Bureau of Statistics and Department of Immigration and Citizenship were used to estimate the number of Australian residents by birth country, English literacy and LOTE spoken, with a focus on those arriving in the past two decades. Prevalence of chronic HBV infection was estimated using source country seroprevalence. The results were compared to Victorian surveillance notification data and published Australian epidemiological and clinical studies. Chinese languages and Vietnamese are the dominant languages spoken by Australians living with chronic hep B infection who speak limited or no English. Estimates of predominant source countries for people living with chronic hep B infection derived from Census data were generally coherent with existing epidemiological and clinical studies but differences exist, particularly for groups targeted for screening such as humanitarian entrants. This study emphasises the need for LOTE resources for Australians living with chronic hep B and suggests priority languages. The notable differences observed between Census-derived estimates and surveillance data suggest there are particularly under-diagnosed groups within the community. Implications: This study has clear implications for prioritising the translation of resources targeting Australians living with chronic HBV infection. The linguistic demography of Australians living with chronic hepatitis B. Cowie, B. Australian and New Zealand Journal of Public Health. Volume 35, Issue 1, pages 12–15, February 2011 • Abridged from http://tinyurl.com/3nho7la

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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.

www.hep.org.au

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

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

Hep Review

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 60) for more information and the contact details of relevant professional associations. • Hepatitis NSW. To access any of the above mentioned articles, please phone the Hepatitis Helpline.

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

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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

support and information services 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). 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 AHCS online hep C support forum Australian Hepatitis C Support - an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390. 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.

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. Wollongong hep C support group A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am-11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.

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.

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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. 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.

HEPConcert – 9 Oct, The Gaelic Hotel, Surry Hills. Tickets via www.moshtix.com.au 2011 Haemophilia Conference will be held on 20-22 Oct, Olympic Park, Sydney: http://tinyurl. com/24n9oy4 18th National Symposium on Hepatitis B and C, 19 Nov, 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.

National Hepatitis C Health Promotion Conference, Brisbane 24-25 Nov. http://tinyurl. com/3pr4dcv

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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for Hep Review and Transmission Magazine. • proofreading for Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker. Want to find out more? Please phone the Hepatitis Helpline for more information (see page 3).

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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.

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Mobile

May we list you on our referral database?

Hep Review

Edition 74

September 2011

Free copies of The Hep Review required

20 50

10 80 160

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

Name

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

www.hep.org.au

State

P ostcode

Home phone

E mail

For individual healthcare or related professionals

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

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