Hep Review ED81 by HepatitisNSW

HEP REVIEW Edition 81

SPRING

SEPT 2013

Free copy Please take

Lou Reed’s liver transplant A survivor of drug-rock survives once more

Prof Lisa Mayer wins PM’s Award A renown researcher is acknowledged nationally

Let’s talk counselling service A new service offers a helping hand across NSW

HEPATITIS NSW – working towards a world free of viral hepatitis Hep Review magazine Edition 81

September 2013

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Let’s talk

Let’s Talk is a phone, web and face-to-face counselling service provided by Hepatitis NSW and facilitated by trained counsellors.

am, 43, has just been diagnosed with hep C. His GP told him to keep the diagnosis secret from everyone apart from his wife, Tammy. “It wouldn’t do for people to know that you had previously used drugs,” the GP said. Every night Sam lies awake worrying about the future implications of the illness, regretting the decisions he made in his past. He’s started smoking marijuana again, has lost weight and is short tempered and irritable with Tammy and their three small children. The lack of sleep makes it hard for him to get up in the morning, and coupled with the ongoing fatigue he experiences, it’s beginning to affect his work. Tammy knows that Sam has hep C but because he won’t discuss it with her, she’s unable to find out what it means for him and for her. She worries about Sam smoking dope and staying up all night. Because he doesn’t want anyone to know about his diagnosis, she has no one to talk to about it. She’s spent hours googling hep C finding lots of information, some of it alarming and inaccurate, and has printed off articles that Sam refuses to look at. Tammy thinks Sam is distancing himself and she feels anxious, lonely and fearful about their future. She walks each day to help relieve her mounting stress. Mahmoud, 30, was diagnosed with hep C last year. At first, he told himself that nothing was wrong, kept his diagnosis a secret from his closeknit family and friends, and continued using, drinking and pursuing a risky lifestyle. Almost 12 months later he had to see a dentist for some minor treatment, and on a whim he disclosed his hep C status to the dental nurse. She was visibly shocked and told him he would have to be immediately rescheduled to the last appointment for the day. Incensed, Mahmoud called the Hepatitis Helpline to ask for advice. He started the call with a raised angry voice, but during the conversation broke down in tears and was unable to speak without crying.

www.hep.org.au

Hep C is a stressful illness. Research has shown that its impact can be profound and far-reaching, affecting relationships, work, leisure and overall quality of life. If this isn’t enough, having a blood-borne virus also brings challenges common to other stigmatised health conditions. Misunderstanding, ignorance or outright discrimination gives rise to a range of additional stresses and strains. On bad days it’s hard to shake off the sense of being marked, different, out of step with everyone around you, and a pervasive loneliness can ensue. As Sam, Tammy and Mahmoud illustrate, we all try to cope in different ways. Sometimes we’re lucky to have positive relationships with GPs, specialists, nurses or social workers at liver clinics. Other times we seek support from alternative healers, naturopaths, online and in personal friends or family. But all too frequently, many of us fall into standard Aussie coping mechanisms, telling ourselves to “toughen up and get through” and telling our loved ones “I’m alright”, or self-medicating with alcohol or other drugs. According to psychologist Grenville Rose, when we find ourselves in these places, we deserve a bit more; a better deal. “You may be able to man up and get through hard times, sure, but you could have a better quality of life if you address mental health earlier rather than later, and that’s what counselling can help with,” he says. Rose, who has a connection with Hepatitis NSW that spans nearly two-decades, is one of two specialist, accredited and registered counsellors; the other is Leila Pesa. Together, they offer free sessions through Hepatitis NSW’s counselling service, Let’s Talk. The service was developed in January 2013 as an extension of the Hepatitis Helpline offering up to six, confidential counselling sessions free-ofcharge to anyone affected by hep C, including hep C negative partners.

Image by Joseph B Wright / flickr

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“Tammy thinks Sam is distancing himself and she feels anxious, lonely and fearful about their future. She walks each day to help relieve her mounting stress.”

Accessing the service is easy – a simple call through the Helpline will determine how best to proceed. The service offers telephone, internet and face-to-face counselling. The face-to-face counselling service is located in comfortable rooms in the friendly Hepatitis NSW office in Surry Hills. The building and the rooms are fully wheelchair accessible. You don’t need a mental health diagnosis, or a GP referral to access the service. The service is also free. Practicalities aside, going to see a counsellor is still a big step. For some, the internet or telephone counselling option provides a bit of safe distance. For others who are thinking about face-to-face counselling, there are fears and misconceptions that probably aren’t helped by the way counsellors/therapists are portrayed in popular culture (think of most Woody Allen movies).

I’d like to reassure readers that none of the staff I met recently at the Let’s Talk service bore any resemblance to Billy Crystal in Analyze This, or had any signs of the neurotic self-indulgence evident in Frasier. There were no signs of the blaming-shaming style of tough love counselling practiced by Dr Phil, the philosophies of evil Nurse Ratched in One Flew Over the Cuckoo’s Nest, nor as far as I could detect, the penchants of Dr Hannibal Lecter in Silence of the Lambs. Joking aside, in addition to the way therapists and counsellors are often represented in books, films and TV, there are understandable fears and misconceptions people have about counselling. I sat down and explored these with Grenville Rose and Let’s Talk manager, Kirsty Fanton.

Hep Review magazine

Edition 81

September 2013

feature Why would you see a counsellor? Gren – People have counselling for all sorts of reasons: to figure out how to live with the virus, or to work out how to stay well. Improving wellbeing is what it’s about. Kirsty – People often want to address symptoms of depression and anxiety or talk to a professional about issues in their life. And, there’s evidence indicating that people with hep C experience mental health issues more than the general population. There’s no shame then, in seeking counselling because you want a better life for yourself? Gren – Not at all. Improving wellbeing is often simply about unburdening yourself by sharing a problem then developing some solutions.

But isn’t it better to take medication than to have counselling? Don’t anti-depressants and anti-anxiety medication work much more quickly? Kirsty – It doesn’t have to be an either/or question. People can have medication and have counselling. But if people contact us and have complex or longer-term needs for counselling, we can support them with a referral elsewhere if we don’t think our short-term counselling service will suit. Gren – Medication isn’t the answer longer-term for every mental health issue. Some people have medication for short-term and then work on issues in counselling as well. But medications aren’t for everyone – they are definitely not the answer for some – and partly the answer for others. What about people who say I don’t need a counsellor I can talk to my friends or family?

Some people have found that the counselling relationship is healing in and of itself solely because it is a conversation with someone separate from family or friends.

Gren – Friends and family can provide enough for some. However for others, an independent person, a confidential conversation with someone who is not involved in their life can be more helpful. Kirsty – Some people have found that the counselling relationship is healing in and of itself solely because it is a conversation with someone separate from family or friends. What happens in a counselling session and how can I trust that my counsellor is right for me? Kirsty – Both our counsellors are fully qualified and clinically supervised. They use an eclectic approach – which means they aren’t fixed on one model of counselling so what they offer is flexible and meets individual needs.

Kirsty Fanton. Image by Joseph B Wright / flickr

Gren – It’s about a safe and accepting environment. The session should be about supporting you, and be non-judgemental. It goes at your pace so you can talk about anything you want. You’re not going to be dragged through childhood stuff or made to cry necessarily. You might even laugh! With our service there’s also the opportunity to talk about stigma and how it affects you and how to handle it, with someone who understands. Both Leila and myself are very different in style so if one of us doesn’t suit, perhaps the other one will.

www.hep.org.au

Image by Jeremy Brooks / flickr

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“It goes at your pace so you can talk about anything you want. You’re not going to be dragged through childhood stuff or made to cry necessarily. You might even laugh!”

Conclusions People may be worried that asking to see a counsellor might mean they are a weak and can’t work things out for themselves. In fact the reverse is true. Having the courage to admit to yourself that you’re in need of help, then fronting up to a person you don’t know, to reach out, and trust them with often intimate and difficult things, is a tremendous act of strength, not weakness. So, if you’re thinking about counselling, if you’re hesitant or unsure, why not be brave and give Let’s talk a go? You can access the service by calling the Hepatitis Helpline on 1800 803 990.

It costs nothing – only your time – and it may well provide something valuable that you’re unlikely to find anywhere else. Good luck. • Charlie Stansfield is a freelance writer who contributes regularly to Hep Review. She is a counsellor and coach with private practices in Hornsby LGA and Chippendale NSW. NB: “Sam”, “Tammy” and “Mahmoud” are fictional characters and bear no resemblance to anyone I have ever known. They are included by way of example of the sorts of people who Let’s Talk could assist.

Hep Review magazine

Edition 81

September 2013

editor’s intro

epatitis Awareness Week 2013 – just gone – marked the first year that Australians with hep C genotype 1 enjoyed the same chance of cure as those people with genotypes 2, 3 and 4. Yes, the future is getting brighter. Although things are getting brighter, you shouldn’t become complacent. If you’re deciding to hold off on hep C treatment, see your GP every 6-12 months for monitoring. You’ll at least know where your liver stands; it’s called being “treatment-ready”. Did you know we’re on a push to include more reader contribution to the magazine? See our promotions on pages 7 and 43. If you’re thinking of telling your story, email or phone me and I’ll forward you our new Hep Review Writing Guide. Put together by our regular writer, Charlie Stansfield, it gives tips about writing a personal story. I hope you enjoy ED81. Our article on Kelvin’s discrimination case (page 26) is an example of how wrong things still are for many people. Our article on Let’s Talk (page 2) shows how we’re really trying to make a difference for everyone. pharvey@hep.org.au 02 9332 1853

ED80 readership survey winner We’d like to congratulate Peter – from the Wollongong area – who was the lucky winner of a $50 gift card. Peter was randomly chosen from the 13 readers who responded to our ED80 survey.

keyhole to our work

SERVICES OVERVIEW

Hepatitis NSW delivers a range of services under two programs: community support, and education and development, and via our information and resources team. In addition, C me, a dedicated advocacy program, supports grassroots community action. It involves people with lived experience of hep C taking direct action with politicians, senior staff and Boards of Local Health Districts, Medicare Locals and other decision makers. We are not currently funded to provide hep B services but we do provide basic hep B information and resources and referral as well as advocate for better hep B services and models of care and treatment. We pay increasing attention to expanding our peer based services. We operate the following services – many with the participation of people with direct experience of living with hep C: Community support • Hepatitis Helpline and the Prisons Hepatitis Helpline • An adjunct to the Hepatitis Helpline is our Online Chat service • Hep Connect provides a phone-based peer support service for people living with hep C, their partners and carers • Live Well, our chronic disease selfmanagement service • C-een & Heard is our positive speakers’ service • www.hepcaustralasia.org is a peer-run and peer-moderated online discussion forum

Weblink of the month

Naloxone is an easy-to-use, lifesaving antidote to overdose from heroin or other opioids. Used in hospitals for decades, the medication costs as little as one dollar for a lifesaving dose and can be administered with basic training. More info? Check out www.naloxoneinfo.org/

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

www.hep.org.au

• Let’s Talk is a face to face, telephone and online counselling service Continued on page 53.

Cover photo of Lou Reed via http://picturepush.com/public/7661049

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contents

Other readers want to hear your story “I have received your valued publication for many years and it helps me deal with my hep C. It continues to inform me, keeping me upto-date with options for treatment. It helps me emotionally as I read and sometimes re-read the stories of others. I even have articles that I found so incredibly helpful, that I have cut out and kept.” RP, Tasmania.

Letters 8 Australian news

World news

Features Let’s Talk

Lou Reed bigger and stronger after transplant 21 Witching hours and treatment time

Dealing with hep C discrimination: a West Coast case study

A gen-X drug user

Dubbo’s methadone shortage

War on drugs”driving hep C pandemic”

New hep C treatments as a prevention tool

An Australian OST overview

Hep C treatment as hep C prevention?

Advocacy A schooling in viral hepatitis

My story

Image / Google Images

Jason’s story: breaking up the day

Duncan’s story: a long and winding road to treatment 40 Research updates Socioeconomic status and hep C

Hep C treatment improves brain function

Hep Review magazine is a lifeline for many people, linking them to news, information, views and stories. We want the voice of people with hep C to ring loudly through the magazine.

Effectiveness of nurse-led treatment in prison

Running a user-led safer injecting campaign

Hep C among HIV positive men who have sex with men

Please consider sharing your story. We can send you a guide to writing your story.

SVR and lower risk for diabetes in hep C

Effectiveness of fincol-type disinfectants

Published stories attract a $50 gift card payment. Your contact details must be supplied (for editorial purposes) but need not be included in the printed article. Articles should be roughly 400 words or 800 words, handwritten or typed. • Further conditions apply. For more information or to submit your story, please contact pharvey@hep.org.au or 0412 885 201. Also see our call for photos on page 43.

Regular features Harm Reduction poster: injecting sites

Hep Chef – Broccoli and potato soup

Hello Hepatitis Helpline – tests for hep C

Reader survey form

Membership form

Pharmaceutical treatment for hep C

Complementary medicine

Support and information services

Hep Review magazine

Edition 81

September 2013

promotions

letters

ONLINE

Victorian prison issues

chat Want to talk about anything hepatitis related? You can now chat instantly with one of our Helpline workers via www.hep.org.au Just click the blue Live Support button at the top of the site, answer some confidential questions for our stats and you’re able to start chatting. There’s no need to sign in or download any new software. Simple! You can use the online chat service between 9am-5pm weekdays (except Thursdays when it is available from 1-5pm). The service provides free information, support and referral to anyone in NSW.

For info, support and referral online

The Sentencing Advisory Council’s report on Victoria’s prison population details a massive increase in the prison population over the past decade, disproportionate to population growth in Victoria. Prisoners currently experience a hep C infection rate of 41% according to the Victorian Ombudsman. This population cannot access sterile injecting equipment and is subject to prison policies that enforce further isolation for drug using prisoners, create perverse incentives with regard to drug use and increases risk for prisoners without hepatitis C by placing them in an environment where only unsterile injecting equipment is available. The prison population is set to continue increasing, with the Victorian Auditor-General citing a capacity crisis by 2016 in Victoria’s prisons and finding that treatment and rehabilitation programs have not kept pace with prison population numbers. The expansion of the prison industry complex is the antithesis of good public health practice. • Dave Taylor, Policy Officer, Victorian Alcohol and Drug Association.

Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, lifestyle education, monitoring of side-effects and referrals to other services. You will just need a referral from your local GP to attend the clinic. This is a great opportunity to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today. • For more info, please contact Katherine McQuillan on 6330 5866 or 0407 523 838

www.hep.org.au

Image via Google Images

news

Image courtesy of Google Images

Courts overturns payout for morbidly obese man

New South Wales – A court’s decision to award a morbidly obese Sydney man more than A$350,000 after his doctor failed to refer him to a weight-loss clinic or recommend him for gastric band surgery has been reversed on appeal.

Hep B Community Prescribing New South Wales – The NSW Ministry of Health, with input from the Australasian Society for HIV Medicine has formally recognised GPs being accredited to prescribe Highly Specialised Drugs for the treatment of chronic hep B. NSW Health has released a policy update on the changes. Check it out by visiting http://tinyurl.com/kjvzznv

Luis Almario was awarded the payout in February after a judge found the negligence of his Manly GP Emmanuel Varipatis led to Mr Almario developing terminal liver cancer, the Sydney Morning Herald reported. However, a three-judge panel of the Court of Appeal overturned the judgement, finding that a doctor was not obliged to do more than “take reasonable care’’ of a patient by suggesting weight loss, which Dr Varipatis did.

For more information about the program, contact education@ashm.org.au

“The duty of care stopped short of requiring an exercise in futility,’’ the panel said.

• Abridged from BBV News, via j.johnson@ latrobe.edu.au

The case was closely watched by medical professionals, some of whom feared the ruling could pave the way for other morbidly obese individuals with life-threatening conditions to sue their doctors.

new hep b resource New South Wales – The Multicultural HIV and Hepatitis Service has a booklet available in Arabic, Chinese, Indonesian, Khmer, Korean, Thai, Vietnamese and plain-English. To view or order the booklet, visit http://tinyurl.com/lochv2l • Abridged from BBV News, via j.johnson@ latrobe.edu.au

Dr Varipatis said he felt vindicated by the decision but also felt sympathy for Mr Almario’s family. The Colombian-born cancer sufferer has been given less than a year to live and is being cared for at home by his wife. • Abridged from ninemsn.com.au (21 April 2013) http://tinyurl.com/nqhdgdk Also see ED80, page 10.

St Vincent’s viral hepatitis clinic St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, Sydney, offers treatment for hepatitis. Featuring a Fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment. • For further information, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au Image courtesy of Google Images

Hep Review magazine

Edition 81

September 2013

news

Lisa Maher wins national Award

NSW Hepatitis Awareness Week

New South Wales – The Prime Minister’s Award for Excellence in making a significant commitment and contribution to reducing the impact and negative effects of drug and alcohol use in Australia was awarded to Professor Lisa Maher at the 2013 National Drug and Alcohol Awards.

New South Wales – NSW Hepatitis Awareness Week ran from the 21st to the 28th of July, 2013 and numerous awareness raising events took place around the State. For the fourth year running, Hepatitis NSW provided small grants of up to A$2500 to community organisations to run a range of activities targeting different groups.

Professor Maher from the University of New South Wales is one of Australia’s leading drug researchers focusing on blood borne viruses. She has conducted research that has not only broken new ground in relation to drug use and related harms, but has also involved ethical and ongoing engagement with affected populations. Dr John Herron AO, Chairman of the Australian National Council on Drugs, announced the winner on behalf of the Prime Minister, saying “Professor Maher has an outstanding record of research, with a particular focus on prevention of infectious disease in vulnerable populations. Her academic achievements are matched by a commitment to translating research into action, thus bringing vital community services such as vaccination, counselling and education to many people.”

Highlight of the week, World Hepatitis Day, took place on the 28 July. It raised awareness of viral hepatitis in the community. The date for World Hepatitis Day is the birthday of Nobel Laureate Professor Baruch Blumberg, a leading figure in the research which led to the discovery of the hepatitis B virus, and ultimately the development of a hepatitis B vaccine. • Check out events that took place in your area: http://tinyurl.com/lh6fkvz

“You bring hope to those who need hope the most. Our nation owes you an immense debt of admiration and gratitude.” • Abridged from drugawards.org.au (21 June 2013) http://tinyurl.com/ycxjyw8

Did you take part in the Australian Treatment Outcome Study ? We are looking for people who were part of the Australian Treatment Outcome Study (ATOS), a study run by the National Drug and Alcohol Research Centre, looking at what treatments work best for heroin users in Australia. ATOS started in 2001-2002 and most people had their ﬁrst interview at a drug treatment service (e.g., at a methadone clinic, detox, or rehab) or at an NSP. These same people were interviewed again several times up until 2005. If you were in this study, some of the interviewers you would have talked to are Kath, Kate, Alys, Anna, Sandra, Ev and Nicky. The study has been re-funded for an 11-year follow-up, and we are looking for the same people we interviewed between 2001 and 2005 to do another interview. If you think you were interviewed as a part of ATOS, please call Jo on 9385 0304 or 0477 426 503. The interview will take about an hour and you will be given $40 for out of pocket expenses.

www.hep.org.au

news

Justice Reinvestment

Hep B Survey now recruiting

Western Australia – A Senate inquiry in Perth is hearing evidence about the future of Australia’s criminal justice system and whether governments should be spending less money on building prisons and more on crime prevention. The concept is known as Justice Reinvestment and it’s proving popular with Republicans in the US who are keen to cut back government spending.

Victoria – The Australian Research Centre for Sex, Health and Society (ARCSHS) is conducting a study that seeks to determine barriers to optimal clinical management for people with chronic hepatitis B.

In Australia the prison system costs taxpayers over A$3 billion a year, and that figure is rising with the jail population growing four per cent a year for the last 30 years. With Aboriginal adults now being jailed at a rate 14-times higher than the rest of the community, indigenous leaders are joining the campaign to introduce a justice reinvestment approach to Australia’s criminal justice system.

ARCSHS is disseminating a questionnaire for completion by people with chronic hepatitis B regarding their experiences. ARCSHS is seeking your assistance by sharing the questionnaire with people who have chronic hepatitis B, in order to support this valuable research. • For further information or to obtain copies of the questionnaire for distribution (and reply paid envelopes), please contact Dr Naomi Ngo at La Trobe University on 0416 267 922 or hepatitisB@latrobe.edu.au

• Abridged from abc.net.au (16 Apr 2013) http:// tinyurl.com/cj56hwk Also see ED80, page 32; and check out the Justice Reinvestment website: http:// justicereinvestmentnow.net.au/

Our online version of Hep Review can be found via www.hep.org.au and contains live links to the various sources shown in blue text at the end of articles. They’re another great reason to go online for your Hep Review magazine.

Do you live in Sydney’s Eastern Suburbs and have hepatitis? Are you looking for treatment? The Prince of Wales Hospital Gastrointestinal and Liver Unit, in Randwick, Sydney, specialises in treating a broad range of liver-related conditions, with a large focus on hepatitis B and C. The nursing staff coordinate all aspects of patient care for people with chronic hepatitis including, education, antiviral therapy, follow-up, medical appointments, interdisciplinary referrals and Fibroscan assessments. We also participate in a range of clinical trials offering new and innovative treatments to our patients. Other health care professionals that complement our service include Psychiatrist,

Clinical Psychologist, Dietician, Social Worker, and Clinical Research Physicians. There are daily outpatient medical clinics so waiting times for patients are minimal. For more information, phone Shona on 9382 3800 or email shona. fletcher@sesiahs. health.nsw.gov.au

Hep Review magazine

Edition 81

September 2013

news

Behaviour study aims to discover future rebels

act’s “Be Smart About Body Art”

Australia – Which of the thousands of fresh-faced children starting high school this year will grow up to be the rebels? Researchers from the National Drug and Alcohol Research Centre at the University of NSW are studying more than 3000 NSW high school students to try and discover whether personality traits predispose them to drug and alcohol problems, and if early intervention can prevent them. The program is part of a new Centre for Research Excellence in Mental Health and Substance Use. Nicola Newton, a chief investigator, said children would be targeted with four personality traits known to put them at higher risk of drug and alcohol misuse: anxiety, impulsivity, negative thinking and sensation seeking. “These children have different motivations for using substances,” she said. “Because of their personalities they cope in maladaptive ways when they are put in a difficult situation”. A similar study, conducted in Britain and published last week in the journal JAMA Psychiatry, found targeting at-risk students decreased their problem drinking by nearly 50%. • Abridged from smh.com.au (31 Jan 2013) http://tinyurl.com/ojvcwkm

Australian Capital Territory – The ACT Hepatitis Resource Centre recently launched “Be Smart About Body Art”, an educators’ kit for teachers and youth workers. It is designed to support learning and increase awareness about viral hepatitis, including the risks associated with unsafe tattooing and body piercing. The ACT Hepatitis Resource Centre recently surveyed ACT teachers about the place of hepatitis education within schools’ teaching programs. Of 100 Health and Physical Education teachers surveyed: • 99% believe that schools have a responsibility to deliver hepatitis and other blood borne virus awareness and prevention education • fewer than half find a way to address hepatitis within their current programs • many respondents cited the lack of suitable teaching materials and training and an absence of focus on hepatitis in the National Curriculum as barriers to educating students about viral hepatitis. Hepatitis teaching materials have now been provided to 160 educators, and more will be made available to other ACT schools and educators in time. • Abridged from an ACT Hepatitis Resource Centre press release (13 June 2013) http:// tinyurl.com/l9ql9rf

resource OF THE MONTH

Hepatitis B Bear and You: Information about the different phases of hepatitis B infection Does trying to understand or explain hep B disease outcome leave you stumped? These brochures and flipcharts, developed by Dr Miriam Levy and published by Hepatitis NSW, are really very helpful for explaining the complexity. People with hep B can phone the Hepatitis Helpline for copies. Healthcare workers can use our Faxback order form to get copies of the brochures and flipcharts (which are intended for use in consultations or short interventions). Hepatitis Helpline 1800 803 990 Faxback order form: http://tinyurl.com/7kctp25

www.hep.org.au

news

Hepatitis B Positive Speakers Project

Pathology at your fingertips

Australia – Hepatitis Australia has been funded to develop a small group of hepatitis B positive speakers for education and advocacy purposes and also to develop some online/DVD media to extend the reach of the project.

Australia – A new testing app has been developed by the Australasian Association of Clinical Biochemists (AACB). The newly launched app contains a comprehensive, alphabetised list of diagnostic and screening tests, with links to associated diseases. It also provides information on a range of conditions, including an overview, signs and symptoms, indications for testing, as well as options for management.

In the first instance, volunteers will be offered tailored training and support to assist their development as speakers. If you are interested in participating in this project, please contact Jacqui Richmond, Project Manager for further information. • Jacqui can be contacted on projects@ hepatitisaustralia.com or 0488 662 268.

New Liver Cancer Prevention Policy Australia – The Cancer Council Australia has released its new liver cancer prevention policy, available online. The policy puts hepatitis B and C front and centre as the leading causes of liver cancer and the primary targets for prevention and treatment. To view the new policy, visit http://wiki. cancer.org.au/prevention/Liver_cancer • Abridged from BBV News, via j.johnson@ latrobe.edu.au

Lab Tests Online-AU is free and is compatable with iPhone, iPod touch, iPad and Android. Click here to view a review in Medical Observer: http:// tinyurl.com/ps7jhn9 • Abridged from medicalobserver.com.au (19 Mar 2013) http://tinyurl.com/ps7jhn9

Liver Cancer now in top 10 Australia – The Australian Institute of Health and Welfare has listed liver cancer in the top 10 for common causes of cancer deaths in its recent edition of Cancer In Brief. In 2007, liver cancer was the 11th most common cause of cancer death. In three years it has moved to ninth position. This is consistent with predictions about the increasing impact of chronic viral hepatitis in Australia and highlights that increasing access to treatment to prevent these cancers is an urgent priority. • Abridged from BBV News, via j.johnson@ latrobe.edu.au

Healthy Liver Clinic every Tuesday 10am - 12pm @ KRC ‡ ‡ ‡ ‡ ‡

Information about hepatitis C transmission and prevention Hepatitis C testing and monitoring Fibroscan referral Specialist treatment Doctor, nurse and counsellor available

Hep Review magazine

Kirketon Road Centre (KRC): Above the Darlinghurst Fire Station, entrance on Victoria Street, Darlinghurst 2010 Phone: (02) 9360-2766

There’s a lot you need to know about hepatitis C - like the fact it can be treated!

Edition 81

September 2013

news

ala wants routine liver-health tests

The New Deal for MSM

Australia – Liver disease is killing 20 Australians a day and costing the nation more than A$50 billion a year, new research shows.

Australia – A new online resource providing men who have sex with men (MSM) with information about transmission of hep C in a sexual context and how to prevent it has been launched in response to the rising number of infections in this group within Australia, UK, Europe and North America.

A study commissioned by the Australian Liver Association has found more than one quarter of the population suffer from liver disease, prompting a call for routine screening in a similar way to tests for heart disease and diabetes. Association Chairperson Professor Amany Zekry says liver health needs to be part of regular medical testing in the same way that blood pressure, cholesterol and blood sugar are. “We need to recognise liver disease as a chronic condition and national health priority.” The most common form of the illness is nonalcoholic fatty liver disease, affecting 5.5 million Australians. The next most common form is viral hepatitis, including B and C. The report was commissioned because doctors had noticed a growing clinical burden.

The website, called The New Deal, is spearheaded by the Australian Federation of AIDS Organisations and includes information about risks, testing, treatment and HIV/hep C coinfection. It is now recognised that hep C infection can have serious consequences for people living with HIV, and that most cases of co-infection within Australia occur in men who have sex with men. To view the recently launched website go to: http://tinyurl.com/n964fdq • Abridged from BBV News, via j.johnson@ latrobe.edu.au

Obesity and drug and alcohol dependence are major risk factors, while treatment for viral hepatitis is essential to prevent progression of liver disease, Prof Zekry says. • Abridged from theaustralian.com.au (27 Mar 2013) http://tinyurl.com/le5c8qa

Royal Prince Alfred Hospital liver clinic Royal Prince Alfred Hospital, Camperdown, Sydney, offers specialist services for people with liver diseases including viral hepatitis. Daily medical and nursing clinics provide liver health checks, fibroscan, IL28B gene tests, treatment assessment and management including access to newer therapies via clinical trials. Image, source unknown.

The clinic also provides specialist care and treatments for people with advanced liver disease and liver cancer, and is home to the NSW Liver Transplantation Unit.

www.hep.org.au

Do you want to know more? Please contact the following specialist nurses: Hep C – Sinead Sheils 9515 7661 or Sue Mason 9515 7049 Hep B – Margaret Fitzgerald 9515 6228 Liver Transplantation – Margaret Gleeson 9515 7263 or Fiona Burrell 9515 6408 Liver Cancer – Barbara Moore 9515 3910

news

Image courtesy of Google Images

57 dental patients may have hep C

USA – Oklahoma state health officials recently found unsafe conditions at a Tulsa dental surgery practice that may have left thousands of patients exposed to hep C. Blood tests have confirmed at least 57 of those patients have tested positive for hep C, according to a statement from the Tulsa Health Department (THD).

New hep c testing guidelines in usa

The officials said much more investigation is needed, including interviews with each patient and further blood tests of patients before they can confirm the viruses were in fact contracted at the dental offices.

USA – Because of the need for early detection, improved antiviral agents, and changes in the availability of commercial hep C tests, the Centers for Disease Control and Prevention (CDC) has issued a new guidance for clinicians and laboratorians.

According to reports, the dentist allegedly reused needles from one patient to another, and without any proper sterilisation. He also allegedly used a second set of dental tools, which were old and rusty, on patients known to carry infection and healthy patients alike.

Since CDC’s 2003 guidance was written, there have been two important developments: the availability of a rapid test for HCV antibody and the discontinuation of RIBA HCV testing.

Dr Kristy Bradley, an epidemiologist with the state of Oklahoma, noted the investigation is complex, stressing the source of infection is still under investigation. “We will certainly continue to keep the public informed as we learn more.”

• Abridged from drugtopics.modernmedicine. com (15 May 2013) http://tinyurl.com/ o7cm9e8 To view the CDC guidance, go to http://tinyurl. com/oqh27qq

• Abridged from redorbit.com (20 April 2013) http://tinyurl.com/nap5tr9 We’ll provide an update on this news in future editions of Hep Review magazine.

Liverpool Hospital liver clinic We offer multidisciplinary specialist services for people in Sth Western Sydney who have hep B, hep C or liver cancer and other liver disease. Interpreters and multicultural support are available for people who attend our clinic. We offer Fibroscan® to assess your liver for damage without a liver biopsy. After assessment you’ll receive a detailed discussion about the best treatment options for you. We also offer services for pregnant women with hep B or C. We offer all new available therapies for hep C as well as access to new therapies through our participation in clinical trials.

Our DVD about hep C treatment, and our DVDs and brochures about hep B, may help you better understand these conditions. These are also available through YouTube: http:// tinyurl.com/nsyj2e9 • For more information, phone: 02 8738 4074 or email: gastroliver.liverpool@sswahs.nsw. gov.au

Hep Review magazine

Edition 81

September 2013

news

Follow-up hep c tests often not performed USA – Among Americans who test positive for hep C, approximately half do not return for the second test necessary to confirm or refute the diagnosis, according to the CDC.

Gilead files sofosbuvir in USA USA – Gilead Sciences has submitted sofosbuvir for approval in the US as a treatment for chronic hep C. The filing is a major step forward for Gilead as it tries to develop an all-oral regimen for hep C that does away with the need for injections of interferon.

Surveillance data during a seven-year period indicate that 49% of 217,755 newly reported HCV patients underwent only the first test for antibodies to the virus, reported Deborah Holtzman, of the CDC’s Division of Viral Hepatitis in Morbidity and Mortality Weekly Report.

The data submitted in the application covers the use of sofosbuvir and ribavirin as an alloral therapy for patients with genotype 2 and 3 HCV, as well as for sofosbuvir in combination with ribavirin and pegylated interferon alpha for treatment-naïve patients with genotype 1, 4, 5 and 6.

Without the second test for RNA [PCR], it is unclear whether patients have chronic infection or leftover antibodies from a cleared infection, the researchers noted. These data suggest that “testing and reporting must improve” in order to detect all persons with current infection.

“Sofosbuvir’s antiviral potency, safety profile and once-daily administration have the potential to improve cure rates by simplifying and shortening therapy for patients with this disease,” commented Gilead’s chief executive John Martin.

“In an era of continued HCV transmission and expanding options for antiviral therapies, surveillance that identifies current HCV infection can help link persons to appropriate care and treatment,” Holtzman and colleagues wrote. • Abridged from clinicaladvisor.com (9 May 2013) http://tinyurl.com/pnesnwf

The pharmaceutical company has completed four phase-3 trials of sofosbuvir in hep C, showing that the drug in various regimens achieved sustained virologic response rates of up to 90%, depending on the severity of the infection. • Abridged from pmlive.com (10 April 2013) http://tinyurl.com/ojdn6gr

The multi disciplinary Liver Clinic at St George Hospital, Kogarah, Sydney, supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials.

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

www.hep.org.au

Image via Google Images

St George Hospital liver clinic

news

AbbVie heats up Alloral Hep C race

Gilead combo shows promise

USA – AbbVie has gained “Breakthrough Therapy” designation for an investigational hep C treatment. The three drug combo of ABT450/r, ABT-267 and ABT-333 treats patients with genotype 1.

USA – Gilead Sciences said almost all patients taking a combination of two experimental hep C drugs appeared to have eliminated the virus after either eight weeks or 12 weeks of treatment.

The FDA’s Breakthrough Therapy nod follows a promising Phase II clinical trial, named “Aviator”. In that trial, the three-drug combo saw 99% of patients hit the key benchmark of sustained viral response after 12 weeks of therapy. The combo will now move to Phase III trials. “AbbVie is pleased that the FDA has granted Breakthrough Therapy designation to our 3-[drug] combination with and without ribavirin. We feel it reflects the potential of this regimen to be important in the treatment of HCV,” said John Leonard, Chief Scientific Officer at AbbVie. • Abridged from mmm-online.com (7 May 2013) http://tinyurl.com/q7qsz5z

Based on data from the Lonestar trial of 60 previously untreated patients, Gilead said it plans to conduct a third late-stage study of the once-daily fixed-dose combination tablet pairing sofosbuvir and ledipasvir. The new Phase III trial, called ION-3, will enrol 600 patients new to treatment who have the most common and difficult to treat genotype 1. It will evaluate the combination tablet for eight weeks of treatment, with and without ribavirin, as well as for 12 weeks without ribavirin. Gilead said all 19 patients in the Lonestar trial who took its combo pill for 12 weeks had a sustained virologic response (SVR), meaning they had no detectable signs of the virus, as assessed by blood tests given four weeks after completing therapy. They will be followed for a further 20 weeks. Researchers deemed any patient in whom the virus is undetectable 24 weeks after completing treatment as cured. In another arm of the trial, 40 of 41 patients who took the tablet for eight weeks were deemed free of the virus eight weeks after they completed treatment. • Abridged from reuters.com (2 May 2013) http://tinyurl.com/qe9vadp

Paediatric viral hepatitis clinic

Hep C and hep B can be passed on from pregnant mother to baby and occur in unknown numbers in children.

Children with hep B and hep C are usually well and often unaware of their infection. Our Paediatric Viral Hepatitis Clinic will provide early diagnosis, monitoring, and in some cases treatment of children with these infections. Assessment and regular follow up is essential to provide optimal care for these children to reduce the risk of significant liver disease in later life. For information, contact Brooke Andersen at the Children’s Hospital Westmead, Sydney, on 9845 3989 or brooke.andersen@health.nsw.gov.au

Image via Google Images

Hep Review magazine

Edition 81

September 2013

news

half billion Verdict calls for rural NZ for Giving Hep C in needle exchanges New Zealand – Injecting drug use and unregulated Colonoscopies tattoos have led to the Southern District Health USA – A health insurance company rolled the dice with a Las Vegas jury and lost more than half a billion dollars. The Health Maintenance Organisation (HMO) was sued by patients who contracted hep C at colonoscopy clinics operated by a doctor who reused syringes and cut corners. The two patients, Helen Meyer and Bonnie Brunson, contracted the virus that attacks the liver after undergoing endoscopic procedures at a clinic run by Dr Depak Desai. Their attorneys argued that the HMO didn’t protect its members from the doctor who had a history of malpractice. “It is the responsibility of the insurance company. They knew [he] was dangerous. They didn’t care because they were able to get [the doctor] to work for such a cheap rate,” said Robert Eglet, attorney for the plaintiffs. The jury awarded A$546 million in punitive damages, the largest such award in Nevada history. Health Plan of Nevada says it plans to appeal because the jury was not allowed to hear evidence of the doctor’s criminal indictment related to the outbreak. • Abridged from blogs.lawyers.com (17 April 2013) http://tinyurl.com/nrn7nk5

Board area having the highest rate of new infections of hep C in New Zealand, sparking a push for needle exchanges to begin in the rural communities.

Public Health South public health physician Keith Reid said the single most common risk factor in new hep C cases in Southland and Otago was a history of injecting drug use. “The second most common risk factor was getting a tattoo in an unregulated setting,” said Dr Reid. “We are taking it seriously,” he told committee members. “The question is, are we taking it seriously enough?” Dr Reid said there was a possibility of more needle exchanges being established in the rural communities through a “multi-prong” approach from different government departments working together. Needle Exchange Services National Trust manager Charles Henderson said yesterday the lack of needle exchange services in rural areas presented challenges, but they could be addressed with funding. • Abridged from stuff.co.nz (6 June 2013) http:// tinyurl.com/m63w96z

Lismore Liver Clinic We provide a free public clinic specialising in hepatitis C & B. The clinic is run by nurses working with Specialist doctors to provide assessment, information and treatment. If you have hepatitis C or B please come and see us. We can provide free access to a Dietician for nutritional support and also to a Counsellor to Image / Mark Fuller assist you prepare emotionally for treatment and identify the social supports you will require. Please get in touch with us on 6620 7539

www.hep.org.au

feature Q&A: How many women in prison have hep C? The female prison population in NSW is growing at a faster rate than the male prison population, with women increasingly being less able to access non-custodial sentencing options. The majority of people in prison have drug and alcohol issues and womenâ&#x20AC;&#x2122;s offending is largely associated with supporting drug and alcohol dependencies1. The prevalence of hep C needs to be put in context: in the general community, around one in every 100 people has hep C. In NSW prisons, around 45 in every 100 female prisoners has hep C. This compares to around 28 in every 100 male prisoners with hep C2. 1

http://www.nobars.org.au/about-women-prisoners.html

http://www.wipan.net.au/publications/HIV-Aust-Magazine_WIPAN-Sub_Apr-2011.pdf

For more info, call the Hepatitis Helpline on 1300 437 222 (local call costs from landlines)

Nepean region Liver Clinic We provide a range of services for persons and families affected by hepatitis B and C. We assist with the assessment and treatment of viral hepatitis. We have a Fibroscan machine and satellite nursing clinics are held at Lithgow and Blue Mountains hospitals, including opioid substitution clinics. Services are also provided at Mt Druitt Aboriginal Medical Service. We can also provide possible access to clinical trials. â&#x20AC;˘ For more information, contact Vince on 4734 3466

Hep Review magazine

Image / Google images

Edition 81

September 2013

advocacy

A schooling in viral hepatitis Since the last edition of Hep Review magazine hit the streets, Hepatitis NSW has been very busy in terms of advocacy, writes Alastair Lawrie, Policy and Media Officer.

he main focus has been our campaign to ensure that Blood Borne Virus (BBV) education is included in the national Health & Physical Education (HPE) curriculum, which is currently being developed by the Australian Curriculum Assessment and Reporting Authority (ACARA). Unfortunately, the draft HPE curriculum, which was released in December 2012 for public consultation, did not mention BBVs, viral hepatitis or HIV, and, if adopted, would not provide students with an appropriate level of blood awareness to help prevent BBV transmission.

BBV education to help prevent new hepatitis transmissions. Well done, advocates! From a NSW viewpoint, the draft HPE curriculum would also be a step backwards for NSW students, because the existing primary and secondary syllabuses for NSW already includes specific references to blood borne viruses. We certainly would not want NSW students to learn less about BBVs than they currently do. On that note, Hepatitis NSW wrote to the NSW Ministers for Education and Health, and their respective Departments, bringing this issue to their attention and requesting that they also support the inclusion of BBV education, blood awareness and harm reduction information in the national curriculum.

“The HPE curriculum should include ... more harm reduction information ... given the NSW Illicit Drug Reporting System continues to show that the average age of first injection remains 18 or 19 years of age.”

Image by Grooble / flickr

The responses which we have received from the NSW Government have been encouraging, however, we will be continuing to campaign on this issue until the final draft of the curriculum is released. At this stage that is expected sometime in the second half of 2013. Of course, we will provide an update through Hep Review and on our website when the curriculum is made public. Hepatitis NSW put in a submission to ACARA on this issue, arguing for the inclusion of BBV education and blood awareness more generally, not just in terms of alcohol and other drugs and sexual health, but also with respect to things like contact sport and tattooing and body piercing. We also argued that the HPE curriculum should include significantly more harm reduction information, which is vital given the NSW Illicit Drug Reporting System continues to show that the average age of first injection remains 18 or 19 years of age. Several of the C me community advocates also put in their own submissions to ACARA raising similar points about the need for 20

www.hep.org.au

In other advocacy news, Hepatitis NSW has also lodged a submission as part of the National Indigenous Drug and Alcohol Committee’s consultation on the development of the National Aboriginal and Torres Strait Islander Peoples Drug Strategy. We argued that harm reduction, including through Needle & Syringe Programs, must play a key role in any comprehensive drug and alcohol strategy. As with the curriculum, we will keep you updated on further developments. • Alastair Lawrie, Hepatitis NSW

Lou Reed bigger and stronger after liver transplant

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“I am a triumph of modern medicine, physics and chemistry,” says former Velvet Underground man, Lou Reed.

ou Reed has declared that he is “bigger and stronger than ever” after recently undergoing a liver transplant. In the first official statement since his wife, Laurie Anderson, revealed that he was dying of liver failure, the former Velvet Underground frontman credited modern medicine and tai chi with saving his life. “I am a triumph of modern medicine, physics and chemistry,” Reed wrote on his website. “I look forward to being on stage performing, and writing more songs to connect with your hearts and spirits and the universe well into the future.” Anderson said that Reed’s condition was “as serious as it gets”, she said, and it will take “a few months” for him to recover from the life-saving transplant.

Reed’s work has long evoked his both fascination and struggle with drugs and alcohol. Heroin, written in 1964, and released with the Velvet Underground three years later, featured the line: “Heroin, be the death of me/Heroin, it’s my wife and it’s my life.” Although he successfully overcame his addictions a number of years ago the physical strain on his body appears to have finally taken its toll. He has previously suffered from hepatitis. • Abridged from newswithtags.com (5 June 2013) http://tinyurl.com/lkfzkmc

Reed hasn’t appeared in public since March 2013, when he made a surprise cameo at a public playback of Transformer. He had already cancelled several gigs earlier that month, citing “unavoidable complications”. The 71-year-old’s most recent album is Lulu, a 2011 collaboration with Metallica.

Image via www\blogspotdotcom.jpg

• Abridged from guardian.co.uk (3 June 2013) http://tinyurl.com/ltc2wyv

Hep Review magazine

Edition 81

September 2013

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Witching hours and treatment time There are days when Mark Healey feels like he is living with the flu – due to the effects of his hep C medication. The treatment is almost as bad as the stigma but the father of two wants that to change with greater awareness, reports Tammy Mills in The Border Mail.

is “witching hour” is 2am. He’ll rise from his bed and like a ghost in the night, he’ll shuffle into the lounge room, collapse on a worn armchair and flick through television channels, blue light projecting on a worn face. Sometimes he’s too exhausted to turn the thing on. Insomnia is one of the side-effects of trying to cure the hep C for Albury/Wodonga father, Mark Healey. So is the stigma. Mr Healey, 44, is one of an estimated 1000 people living with hep C in the “Border” region and one of 220,000 Australians with the blood-borne virus. It’s largely contracted through [blood-to-blood contact when people use contaminated needles] and the virus can cause inflammation of the liver, which can lead to cirrhosis, liver cancer and in some cases, death. There are six main genotypes of hep C with types 1 and 3 the most common strains in Australia. Mr Healey was a “Broady Boy”, the term for those who grew up in the sometimes rough and tough northern Melbourne suburb of Broadmeadows. “I was young, experimental and I played around in everything. I tried drugs, tattooing and piercing,” Mr Healey said. Sitting in the backyard of his North Albury home, the tattoos etched on his left leg and arms are a legacy to his impetuous youth. Mr Healey will never know for sure what gave him hep C but the tattoos could have been the legacy that seeped through the skin.

diabetes,” he said. “I didn’t feel sick or anything. The only reason I went to the doctor was to satisfy my wife.” He remembers walking out of the doctor’s office after the test results came through as positive for genotype 3 hep C. “I left feeling like a leper,” he said. “I remember thinking ‘What have I done? Have I infected my family?’” That “leper” feeling is a stigma people like Mr Healey and medical professionals are trying to address, to encourage more people to be tested and treated for the virus. Alan Fisher is a clinical nurse consultant who oversees the hep C program that runs out of Albury Community Health Centre. Mr Fisher said that much hep C stigma is believed to come from the belief that the virus only occurs in people who use drugs. “That can lead to a stereotypical view from the community and unfortunately some health professionals that people with hep C are drug dependants and ‘bad’ people. In turn, people living with hep C are reluctant to disclose their status and seek advice on treatment options for fear of judgement or rejection,” he said. “But we have treated people from all walks of life. It’s a virus. Lots of different people have it and there’s a good chance we can cure it. So let’s forget about morals.”

It was August last year when the father of Jess, 25, and Rhys, 19, finally went to see a doctor. Jess had finished treatment for a brain tumour and Mr Healey turned some attention to himself.

The program has been running in Albury since 2010 when a hep C treatment nurse position was created. This was in response to a NSW Health report recommending hep C support services should double by 2012.

“My wife had been nagging me for months and months and months to go to our doctor because I was drinking a lot of water and she thought it was

A specialist doctor travels once a month from Sydney to run a clinic but equally key to its success is the specialist nurse.

www.hep.org.au

Mark Healey. Image reprinted with permission of The Border Mail.

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“We couldn’t have a program without her,” Mr Fisher said. Mr Fisher said the nurse became the clients’ key support between clinic appointments, assisting with everything from finding Centrelink payments for those who can’t work during treatment to ensuring blood tests were completed. The position is crucial because treatment is so intensive.

Mr Healey, who once ran a fencing business in Howlong after moving to the Border almost 20 years ago, has not been able to work since he began the 24-week treatment in August 2012. He flips through the blue diary on the table, his “Bible” that keeps track of a life that has become all about medication, tests and appointments. His treatment is like most of those with his genotype; it knocks him for six.

Hep Review magazine

Edition 81

September 2013

feature “I’ve felt like that the whole way through, like I’ve got the flu,” Mr Healey said. “But insomnia is the biggest side-effect.”

“We’ll be able to provide greater support for patients and increase the number of people who can get access to treatment.”

No one knows how a patient will react until they’re treated but there’s a very good reason to go through it. “You do it because you’ve got a chance of a better life,” Mr Fisher said.

Both Dr Shanahan and Mr Fisher said treatment was crucial not only for the patients themselves but for the community. Dr Shanahan said if you left hep C untreated for long enough it would become a significant financial burden on the health system and cost the public tens of millions of dollars.

Dr Tim Shanahan is a Wodonga gastroenterologist and has treated patients with hep C from the region for 12 years in conjunction with the Wodonga hospital. In January, he had 14 new referrals in addition to the 60 patients he follows up on. New, non-urgent patients have to wait up to six months to see him. Dr Shanahan is swamped and he said services in Albury-Wodonga to treat the virus were inadequate. He’s talking with Gateway Community Health executives about establishing a new structured clinic there. “That clinic would involve a greatly expanded role for the hepatitis nurses as well as rapid and more timely access to drug and alcohol counsellors and mental health workers including psychologists,” Dr Shanahan said.

“People are showing up with advanced liver disease and they’ll end up in the public or private health systems,” he said. Mr Healey said the most important thing to him was to encourage others to get monitored before it’s too late. “If someone doesn’t come out and say something, the public doesn’t get to hear it and doesn’t recognise the magnitude of the problem,” he said. “If this could save one or two people, I’d be happy.” • Reprinted with permission of The Border Mail (6 April 2013).

Phillip Mercieca, NSW. Image by Exposition by RAF.

Phillip – also from rural NSW – hopes for better access to hep C treatment and support staff for people outside the Sydney metro region.

www.hep.org.au

Are you affected by hepatitis and looking for support? Then Let’s Talk.

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Hepatitis NSW has a free counselling service offering face to face, telephone and online sessions. We have a team of qualified counsellors and a psychologist, all with specialised knowledge in hep C. If you want to talk we have someone who will listen and work with you to start creating a better way of living. For more information call the Hepatitis Helpline on 1800 803 990 or email kfanton@hep.org.au

Let’s Talk

Hepatitis NSW Counselling Service

Certain physical and psychological profiles predict better treatment outcomes across a range of medical conditions. Little is known of how these factors predict treatment outcomes in hep C. The primary objective of this research is to increase understanding of individual profiles that are associated with better hep C treatment outcomes. The study is open to people preparing for hep C treatment and participants are being sought from within Australia or from other countries. Information provided is completely confidential and you have the right to withdraw from the study at any time. For more information and if you have any questions regarding this research please contact Mr Simon Langston at slangsto@bond.edu.au Hepatitis C Treatment Outcome Study @ Bond University http://hepcstudy. hsstechnology.bond.edu.au

A shoutout from the hepCaustralasia online PEER forum I’m “Dee”, one of the forum moderators. What we love about the forum is we have a place to go to where everyone is in the same boat and we can talk freely about our experience without having to disclose to the wider world. And most importantly, it provides valuable advice and support for those of us on treatment. It is a long hard road but made a lot easier by having sympathetic, like-minded people to talk to. Image by Cedric’s pics / flickr

The Hepatitis C Treatment Outcome Study

Join us at: hepcaustralasia. org

Hep Review magazine

Edition 81

September 2013

feature

Dealing with HEP C discrimination: a West coast case study A news item in The Sydney Morning Herald earlier this year, reporting on a worrying case of discrimination and stigmatisation, caught our eye. We commissioned our writer, Adrian Rigg, to take a closer look.

e can’t control what other people think about us. However, we can control what others know about us; but what if someone took this control away from you? This is a real concern for people with hep C. Most people choose to tell a few close family members and friends, and others who may need to know. For many, it’s important to minimise the number of people who know about it, not from feelings of shame or embarrassment, but because of the assumptions and misunderstandings that may result. Choosing how and when you tell people allows you to share information and resources about hep C with them, so that their questions can be answered. Unfortunately there is still a lack of knowledge about hep C in the community, what it means for someone who has it and the risks for the people around them. This became a life-changing issue for Kelvin Matthews in 2007, when he was CEO of the Shire of Shark Bay, in Western Australia. An elected councillor began making public comments about him, including, among many other things, that he had hep C. He did this by talking to people, sending emails to other councillors, government ministers and department agencies, and even speaking to the media. The Disability Discrimination Act

The Disability Discrimination Act 1992 (DDA) protects people who have a condition which comes under the definition of a disability. This broad category includes people with “the presence in the body of disease-causing organisms”, which means it covers people with hep C. It also covers cases when a person is believed to have some sort of disability, whether they actually do or not. The Act also aims to protect relatives, friends, carers and co-workers of a person with a disability from being discriminated against because of the relationship, for example if they need time off to care for the person.

www.hep.org.au

Harassment also comes under the DDA. This covers face-to-face and written abuse, threats, and intentionally demeaning comments or behaviour. Discrimination in the workplace The DDA states that it is unlawful for an employer to discriminate based on disability when related to: offering employment; employment conditions; promotion, training or transfers; dismissal, or subjecting them to any other detriment. In Kelvin’s case, he was being discriminated against by the councillor (officially his employer) who was claiming that Kelvin had been employed without declaring that he had, among other things, hep C. This is not something that a person must declare at any time during their employment, unless they are a health care worker who performs certain invasive procedures, or are in the Australian Defence Force. The public statements made about Kelvin are forms of harassment and vilification, also considered to be discrimination. It seems the councillor’s intent was to make working life difficult for Kelvin. He sent an email to the other Shark Bay councillors saying, in part: “I have been given to understand from a seemingly reliable source that Mr Matthews has hepatitis C.” He had no reliable evidence of this; he could not have know whether Kelvin had hep C or not. He went on to say that he was informing them because he had a sense of duty of care, and that “I don’t know sufficient [sic] of the medical prognosis of the various hepatitis conditions but I do know it comes under the heading of contagious diseases.” The Complaints Procedure Kelvin made a formal complaint to the Australian Human Rights Commission (AHRC) and the WA Department of Local Government (DLG). The complaint was separated according to the issues, with the AHRC dealing with the medical-related discrimination content, which comes under the

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The councillor’s intent was to make working life difficult for Kelvin Matthews.

Image of Shark Bay, WA, by robertpaulyoung / via flickr

He sent an email to the other Shark Bay councillors saying, in part that “Mr Matthews has hepatitis C... it comes under the heading of contagious diseases”

DDA, and the DLG ruling on the other allegations that had been made against him; the DLG ruled in Kelvin’s favour. “The DLG concluded their investigation and found the councillor guilty,” Kelvin says. “He was ordered to make a public apology to me.”

After initial investigation, the AHRC recommended conciliation, involving face to face and telephone conferences. Kelvin says he was only seeking an apology, but that this was impossible in the circumstances, with the councillor unwilling to admit he had done anything wrong.

Hep Review magazine

Edition 81

September 2013

feature If, after conciliation has taken place, no solution can be reached, the President of the AHRC will decide to terminate the case. The legislation then allows the matter to proceed to court if the complainant wishes; this also applies if the case is terminated by the AHRC for any other reason, for example if the President is satisfied that a complaint is lacking in substance. Conciliation through the AHRC is a prerequisite for taking a discrimination case to the Federal Circuit Court (formerly the Federal Magistrates Court) or the Federal Court of Australia. This means that the case will be heard under federal legislation; each state and territory also has its own antidiscrimination legislation. A case being handled by the AHRC is considered resolved if both parties enter into an agreement on the outcome. The AHRC finalises the complaint under the relevant law; no further legal action may then be taken. The resolution may involve a formal apology, a change in workplace policy, employee training, or compensation. The AHRC states that it does not have the power to decide if unlawful discrimination has taken place; also, they cannot take the matter to court on your behalf, or help you present your case in court. The President of the AHRC terminated Kelvin’s case when no satisfactory solution could be reached. Kelvin was disappointed with the outcome of his complaint. He feels that the AHRC does not have the authority to satisfactorily resolve cases. “The AHRC is good at educating people about discrimination and the Disability Discrimination Act, but I don’t think they have enough scope to enforce it,” says Kelvin. Kelvin decided to take the matter to the Federal Magistrates Court (FMC). Further unsuccessful mediation followed, and then the matter proceeded to trial. “After waiting nearly 18 months from the trial date, my application was dismissed from the FMC, says Kelvin. “This was on the grounds that I had negotiated my departure from the Shire of Shark Bay under a Deed of Settlement that ‘protected’ any further action being taken against my former employer, including the councillor.” Federal Magistrate, Toni Lucev, who heard the case, said she would have ruled that Kelvin had been discriminated against, but had to dismiss the application as further redress was prohibited by his agreement with the council.

www.hep.org.au

Misinformation about the risk of hep C Another disturbing aspect of this situation is that is highlights the lack of knowledge about hep C in the community. One of the councillor’s stated reasons for informing colleagues of Kelvin’s rumoured hep C was his concern for their health. In his defence the councillor said that he was concerned about staff sharing eating and drinking utensils with Kelvin: “Mr Matthews conceded he had his own mug...I never noticed him having his own mug, but at least that is an acknowledgement that he knew of the potential for hepatitis being transmitted to others.” The councillor clearly did not understand that hep C is only contracted through blood-to-blood contact, and that this is extremely unlikely to occur in a normal working environment; neither hep B nor hep C can be transmitted through sharing eating or drinking utensils or by social contact. Disappointingly, major newspapers that ran the story of Kelvin’s complaint did not take the opportunity to correct this misinformation. Nor did they contact Kelvin, who would have been happy to provide his side of the story, as well as some information on transmission and treatment. Taking on a discrimination complaint Kelvin has had years of experience working in local government, so was well aware of the relevant legislation, and had a good understanding of how formal complaints are managed. This gave him an advantage over most people who may be in a similar position. Even so, he found the process extremely arduous, exhausting and dispiriting. He can see how many people would find it too intimidating and would not have the resources to follow the process through. There is also the possibility that by taking such action, a person is opening themself up to publicity through the media, and in Kelvin’s case, giving his accuser a much greater platform for his claims. Many more people may hear about it, which can affect all aspects of someone’s life, including future employment. “Before undertaking this, you should consider the effect the stress of the case will have on you and your family,” says Kelvin. “Especially in a small community like Shark Bay, where everyone will know about it.” It is important to consider what the likely outcome will be, and whether this will be worth fighting for. A public apology is gratifying, but will everyone

“Federal Magistrate, Toni Lucev, who heard the case, said she would have ruled that Kelvin had been discriminated against, but had to dismiss the application as further redress was prohibited by his agreement with the [Shark Bay] council.”

Unrelated image featuring random people. Image by SWE_EUpress per@arnsater.se

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In NSW, people can access protection under the Commonwealth Disability Discrimination Act and the NSW AntiDiscrimination Act. You can seek assitance possibly from your local Community Legal Service or HALC – a viral hepatitis related legal service. To talk about possible discrimination that you feel you’ve experienced, or for more information about your legal options, contact the Hepatitis Helpline – 1800 803 990.

HALC

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

HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with:

• Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.

who heard the accusations know about the apology? Unfortunately, this will not erase the damage that may have been done to someone’s reputation.

“Fundamentally it is wrong for anyone to do this to someone with hep C, and that is worth fighting,” he says.

However, Kelvin says that knowing what he knows now, he would still have gone ahead with his complaint.

• Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com

Hep Review magazine

Edition 81

September 2013

feature

A Gen-X drug user A survey conducted this year in Australia in partnership with Fairfax Media was the biggest to-date, looking at the use of illegal drugs. Amy Corderoy of The Age reports on the findings.

“That’s the group whose lives are [seriously impacted] by drugs, but that is a minority”.

“I’d say I’m a pretty busy person,” says Simon (not his real name).

Two years ago he had an epiphany: someone needs to talk to these other users, find out what they are doing and give them a forum to find out more. Along with the survey he started a website called drugsmeter.com, which allows users to get feedback on their use.

very day Simon gets up at 5.30am to do yoga. Afterwards he heads to his full-time job at a university. Sometimes, he throws in some volunteer work as well.

The reason he doesn’t want his name used is because there’s one other part of his lifestyle Simon is explaining. “I would use drugs a couple of times a month,” he says. “Hallucinogens, mainly, and MDMA”. He also uses cannabis and alcohol, although he tends to drink on only one or two nights a week. “I’m reasonably healthy, I look after myself a lot of the time. I’m probably not what a lot of people who are anti-drug have as their stereotype of a drug user,” he says. But Simon is a pretty good example of the type of drug user identified by the Global Drug Survey, conducted this year in Australia in partnership with Fairfax Media. At 32, he is a little younger than many of those who shared their experiences, about 30% of whom were aged between 40 and 60. Overall the 6600 respondents were an educated, healthy, heterosexual, Anglo-Saxon and well-off bunch – about a quarter earned more than A$100,000 a year. The survey is the biggest undertaken in Australia examining the use of illegal drugs, with about two-thirds of people using them in the past year, and about 45% in the past month. It paints a picture of the mainstream drug user, one largely ignored by our focus on the harms, and crime, associated with drugs. The founder and director of the Global Drug Survey, Dr Adam Winstock, is a London-based addiction psychiatrist. “I spend my life working with one group of drug users, and they seem to be the only group that governments are interested in,” he says.

www.hep.org.au

“You need to start thinking about basing your policy and your services around the 80-90% of people who use drugs,” Winstock says. And, all over the world, he says, those people are similar: next-door neighbours, mums and dads, Uni students. The survey asked people about the good and bad feelings linked to drugs, such as whether they helped you relax or socialise, made you feel sick or act in ways you regretted. When the good and bad were added up, alcohol and tobacco came out as the least pleasurable drugs. The most pleasurable? MDMA (ecstasy) and LSD. It’s tried-and-tested drugs such as LSD, ecstasy, cannabis and cocaine that people are most interested in trying, despite the explosion in new drugs, often sold as “legal highs”. And most were not buying drugs online, but from friends and dealers, or, in the case of legal highs, from adult shops and tobacconists, says Dr Monica Barratt, a research fellow at the National Drug Research Institute at Curtin University. “Of those who do buy online, most of them report first doing so in the last couple of years, which indicates that buying online is becoming... increasingly popular,” she says. “The public has the idea that the legal status of drugs will have a much bigger impact on individual choices that it does in reality,” says Professor Alison Ritter, the deputy director of the National Drug and Alcohol Research Centre.

Image by CarbonNYC / via flickr

feature

â&#x20AC;&#x153;The survey is the biggest undertaken in Australia examining the use of illegal drugs, with about twothirds of people using them in the past year, and about 45% in the past month.â&#x20AC;? Hep Review magazine

Edition 81

September 2013

feature The survey asked respondents what would happen if small amounts of drugs were legal, if they were punished with a fine, or if they were available from a government outlet, with guaranteed quality and purity. Most people said legality would make no difference to the amount they would use. About 15% said they might use more drugs; 25% said they would probably drink less. Ritter, who also runs the centre’s drug policy modelling program, is frustrated by the focus on crime and drugs. “It seems crazy to me. We know that providing treatment that’s appropriate to someone’s needs works, yet we invest substantially less in treatment services than we do in policing,” she says. But if people would not increase their drug use if they were legal, why is alcohol so widely used? Ritter says there is too much history and culture associated with alcohol to determine what role

legality plays. “You can’t argue therefore that if cannabis for example became legal, 80-90% of the population would use it,” she says. Gino Vumbaca, executive director of the Australian National Council on Drugs, argues governments are interested in the majority of drug users who don’t develop problems, and the council is working to develop an app that can help people monitor their use. “Sometimes people don’t realise the patterns they are developing until it’s too late,” he says. “We’re not saying that everyone who uses drugs will have a problem, but a percentage will.” But besides tobacco, which has its own unique health problems, Vumbaca says, alcohol causes Australians the most problems. “It’s quite easy to say that just because alcohol is legal it shows what a problem legalising drugs could cause, but what it shows is how not to do it,” he says. • Abridged from theage.com.au (16 Mar 2013) http://tinyurl.com/o79q28k

In Australia, the most commonly used illicit (illegal) drugs include: 1. cannabis 2. amphetamine-type drugs 3. heroin and opioid-type drugs The last two of these groups of drugs involve potential risk for transmission of hep C – if people inject the drugs. Around 1.4% of Australians have tried heroin at some point in their life (which is around 312,500 people). Around 0.2% of Australians used heroin in the last 12 months (which is around 44,500 people). Over 60% of people who use NSPs (needle & syringe programs) are hepatitis C positive. One in ten of people who inject reported using another person’s needle and close to one in five reported that their needle was used by someone else. Illicit drug use in Australia: Epidemiology, use patterns and associated harm. (2007)

www.hep.org.au

feature

DUBBO’s methaDONE shortage

Dubbo’s methadone prescribing service is over-stretched and needs fixing, says Magistrate, Andrew Eckhold in the Daily Liberal.

ore doctors need to treat drug users in Dubbo to tackle a major shortage in the city’s methadone prescribing service. That’s the view of Magistrate Andrew Eckhold who used the Dubbo Local Court bench to highlight a worrying health deficit. “Not many general practitioners in Dubbo are involved in the methadone program but they can prescribe as much Oxycontin as they wish,’’ Magistrate Eckhold said. A Dubbo health professional with 30 years experience said opiate drugs were cheap and easy to obtain. “The price has come down tremendously over the years,” he said. “As a result, there are more drug users and more people seeking support to get off their addiction.”

a private clinic at a local medical surgery. A small number of pharmacies are also involved. “The public clinic has a three to six month waiting list. That is too long and too late. The service needs to be available when users are ready to do something about their addiction.” A Dubbo pharmacist said services to assist drug dependents needed to be far better funded. “Local service providers have limited places and limited capacity,” he said. The pharmacist said the methadone program allowed some patients to get off drugs. For others regular controlled doses “managed” their addiction. “Methadone is all about harm reduction for society and the patient,” the pharmacist said.

“Methadone services in Dubbo and the region simply cannot cope with astronomical demand that is exploding through the roof.”

“Sadly, local service providers can’t help everyone. I’ve had mothers in tears pleading with me to take their kids as methadone patients.

“Magistrate Eckhold is right to jump up and down about the methadone service shortage but it is not something that can be easily fixed,” he said.

“As a father I hate to see the results of dependence. I hate the sad situation [people] are in and the stress on the faces of their parents.”

“Methadone services in Dubbo are offered through a public clinic located near the base hospital and

• Abridged from dailyliberal.com.au (31 May 2013) http://tinyurl.com/k2jwdtd

Image not related to Dubbo. Via http://www.crazygallery.info/Methadon.html

The health professional cannot be named due to privacy laws and the pharmacist asked to remain anonymous.

Hep Review magazine

Edition 81

September 2013

www.hep.org.au

High-Risk Sites l l

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Injecting into something so deep is dangerous enough, but with the femoral vein there is added

dy o b e h t e insid p e e d s i s. vein g l e a l r e o h m t e f from The k c a b d o s blo g n i r b d n a

Injecting into the groin is v ery dangerou s.

Sites

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 magazine

Edition 81

September 2013

The Hep Review harm reduction poster, Aug 2013 (#36). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au

If you are thinking about using your groin (or are already doing it), talk to your drug/needle exchange worker about what you plan to do and get support and advice: there are booklets available with more information for groin injectors.

The exact position varies from person to person: you've got a one in three chance of hitting the vein. Get it wrong and you run the risk of losing your leg or hitting the roof with pain...

risk because it is wrapped around the femoral artery (which takes blood down into the legs) and the femoral nerve (which takes sensation to the legs).

my story

Jason’s story: Breaking Up the Day Y our stories touch me, so here’s mine. I’m a chronic drug user, or was until I landed myself in jail for the first time in my life, in June. I am a local Waterloo man, 39 years young. Waterloo’s always been my backyard for using. My drug of choice is “slow” (heroin or morphine). Occasionally I’d use speed or ice and of course, cannabis. I’ve been addicted to the needle for 11 years now, since the first time I couldn’t get enough. I’ve spent days and nights getting high, not a day sober unless I wanted to clean up my act. The first five years of using were fairly easy to get through, but once I started heroin it became much harder. Just after my 30th birthday I was revived by a driver who saw me asleep at the wheel on the side of the road and called an ambulance. Once I knocked myself out on the gear in my living room with no one home or around for days, I woke up a few hours later to look out of the window and see darkness, a needle barely out of my arm and a bloody lip from hitting the coffee table as I went down. One time I got greedy with a hundred-bag and had to be revived by my friends. I remember them pumping my chest to give me air; me feeling paralysed.

The last time I overdosed, I was rushed to St Vincent’s hospital, 15 minutes away by my friends. I woke up on the emergency table with the doctor about to shock me with the defibrillator after the shots of Narcan. I snapped back into action and grabbed my bag at the end of the bed, rushing out to get a shot of speed to get rid of the headache that Narcan causes. I’ve been attacked, held down and robbed, taken out and taught a lesson. I’ve seen the rich and the poor side of the drug world. I’ve seen people beaten black and blue, people taken advantage of, used as drug runners, connectors, dealers, underworld sex workers. I’ve lost my woman, my dog, my son, my house, my car, my friends and my family for my choices and some of them can never be reversed. My arms are scarred in track marks. They have mostly collapsed on me. I’ve got to a point where I can use and use and it doesn’t do anything. I don’t know whether I’d be able to escape the enjoyment of putting a needle in my arm or get a real job and live life as a normal person. As they say, what goes around comes around. Just because I’m a “junkie”, it’s no one’s business but my own. We’ve all got problems. We all use for a reason. From my experience drugs can be very dangerous. But I remember how good it feels, and how it can break the day up so it doesn’t drag on with nothing to do.

www.hep.org.au

Image by Corey Nasfell / via flickr

• Jason, NSW (Waterloo Crew)

feature

War on drugs ‘driving hep C pandemic’

The global war on drugs is fuelling a hep C pandemic causing millions of needless infections, the Global Commission on Drug Policy has warned.

he Global Commission on Drug Policy has called on governments to decriminalise drug use and provide schemes, such as access to sterile needles, to halt the spread of the disease.

Governments “must immediately redirect resources away from the ‘war on drugs’ and into public health approaches that maximise hep C prevention and care”, the report recommended.

Repressive drug law enforcement is driving high rates of infection among injecting drug users, and resources need to be redirected into treatment and prevention, the Commission said.

“Hepatitis C has to be one of the most grossly miscalculated diseases by governments on the planet,” said commissioner Michel Kazatchkine, UN secretary-general’s special envoy on HIV/ AIDS in Eastern Europe and Central Asia.

It estimated that of 16 million people worldwide who inject drugs, 10 million are living with hep C. This puts them at risk of fatal and debilitating liver disease. The group, which includes seven former presidents, ex-UN chief Kofi Annan and other world leaders, has previously linked the “failed” war on drugs with the spread of HIV. In its latest report it says in some countries with the harshest drug policies more than 90% of people who inject drugs are living with hep C.

The Commission also highlights the potential for dramatic savings to countries’ health and welfare budgets in the long term from preventing cases of liver disease.

Eastern Europe and Central Asia have seen the fastest spread of infection and the highest number of infections has been reported in China, the Russian Federation and the USA.

“The war on drugs is a war on common sense,” said commissioner Ruth Dreifuss, who is also the former president of Switzerland.

Strongly enforced policies criminalising drug use force users away from public health services and locking up vast numbers of injecting users perpetuates the spread of the infection, the Commission warned in the latest report.

Image via boliviawater.files.wordpress.com

The report highlighted Scotland’s national Hepatitis C Action Plan as an example of best practice. Launched in 2006, the strategy has led to a four- to six-fold increase in the provision of sterile injecting equipment and an increase in the number of people, mainly in drug services and prisons, being tested for the infection.

“Repressive drug policies are ineffective, violate basic human rights, generate violence and expose individuals and communities to unnecessary risks. • Abridged from bbc.co.uk (29 May 2013) http://tinyurl.com/q282ffs

Hep Review magazine

Edition 81

September 2013

feature

New Hep C treatments as a prevention tool? New combinations of hep C drugs could have major public health benefits, a modelling study published in the online edition of Hepatology shows.

caling-up treatment rates in Edinburgh, Melbourne and Vancouver has the potential to achieve significant reductions in prevalence of hep C among people who inject drugs, a new modelling study shows. Doubling current treatment rates would reduce hep C prevalence among injecting drug users in Edinburgh by 50%, but a similar reduction in prevalence in Melbourne and Vancouver would require 13- and 15-fold increases in treatment rates. Professor David Goldberg, who lead the team implementing Scotland’s Hepatitis C Action Plan between 2008 and 2011 was encouraged by the findings of the research. “This study demonstrates that, in a country like Scotland which has a government seriously committed to the improvement of hep C services, increasing patient access to antiviral therapy could potentially have a major impact in the prevention of transmission of infection,” he said. Harm reduction is at the core of current hep C prevention initiatives targeted at people who inject drugs. However, needle and syringe programs and opiate substitution therapy have had only a limited impact on incidence rates. Current treatment for hep C is based on pegylated interferon and ribavirin [and, for people with genotype 1, boceprevir or telaprevir]. Uptake rates among injecting drug users are low, however, possibly because of the long duration of therapy (up to 48 weeks) and high risk of sideeffects. But a number of promising oral drugs are in clinical trials. Preliminary results suggest that treatment with combinations of direct-acting agents (DAAs) can achieve response rates above 90% and that the drugs have a much milder sideeffect profile than current therapies. Wanting to assess the potential prevention role for combinations of new hep C oral drugs, researchers developed a mathematical model for three cities – Edinburgh, Melbourne and Vancouver – each of which has a similar ratio of

www.hep.org.au

people who inject drugs in the adult population (below 1%). Prevalence of chronic hep C among people who inject drugs in the three cities varies markedly, from 25% in Edinburgh, to 50% in Melbourne and 65% in Vancouver. The model assumed that therapy with oral drugs lasting twelve weeks would achieve a sustained virological response [cure] in over 90% of people. The authors calculated treatment rates needed to reduce prevalence of chronic hep C among people who inject drugs by 50% and 75% over 15 years. The current hep C treatment rate among people in Edinburgh who inject drugs is 3%. The model showed that, if uptake of oral drugs treatment remained at this level, the prevalence of chronic hep C among the city’s injecting population would be reduced by 26% by 2017. In both Melbourne and Vancouver, the hep C treatment uptake rate is only 1% each year. The investigators showed that at this level of uptake, therapy with oral drugs would only achieve a 2% reduction in prevalence over 15 years. To achieve a 50% reduction in prevalence by 2015, the proportion of individuals treated with oral drugs each year in Edinburgh would need to double. A similar reduction in Melbourne and Vancouver would require treatment rates with oral drugs to increase 13- and 15-fold respectively. A 75% reduction in prevalence would require a three-fold increase in treatment rates in Edinburgh, an 18-fold increase in Melbourne and a 20-fold increase in Vancouver. “This would result in chronic hep C prevalences of less than 10% in Edinburgh, less than 15% in Melbourne and 20% in Vancouver,” said the authors. “The development of highly effective simplified new hep C treatments has the potential to greatly enhance existing prevention strategies,” said Professor Greg Dore of the University of NSW.

feature

“Access to affordable hep C direct acting antiviral regimens [oral drugs] for people who inject drugs should be a major focus to harness this potential prevention capacity,” he said. The rapid expansion of access to HIV therapy could provide a model for the scaling up of hep C therapy. However, as with antiretroviral treatment, cost is likely to be an issue. Assuming that the cost of new DAAs would be similar to the already licenced HCV protease inhibitors, then the annual cost of treatment in Edinburgh

would be A$3.5 million and the approximate annual costs in Melbourne and Vancouver would be in the region of A$50 million. “Hep C treatment is cost-effective,” conclude the authors. “In most settings treatment of people who inject drugs is highly cost-effective primarily because of the potential prevention benefit and reduction in secondary transmission.” • Abridged from aidsmap.com (11 May 2013) http://tinyurl.com/nzj6x3r

“The development of highly effective simplified new hep C treatments has the potential to greatly enhance existing prevention strategies.”

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Hep Review magazine

Edition 81

September 2013

my story

Duncan’s story: a long and winding road to treatment “Duncan” lives in regional NSW. Now aged in his early 50s, he was diagnosed at the age of 44.

went to the doctors because I was peeing a lot and I read that it might be something to do with prostate problems. All the tests came back negative except one said that I had hep C. I was shocked. What is hep C?

Things were dragging out and I started to get fed up. I kept telling them I just wanted to start treatment but it took so long, we ended up moving. This time to Central West NSW. Once we got settled I tried again, the third time. The ball got rolling and I saw the nurse. Not long afterwards, I was on treatment. Mine was a 48 week triple treatment.

The doc said it could have been sitting in my body for 20 years or more. If I hadn’t gone in for the tests I most probably would not have known. I explained I used to share needles in my early twenties. He said that that’s where I most probably got it from.

I thought it would be easy just taking pills and a needle once a week but after five months I had all the side effects. Hair loss, itchy skin, bad taste in mouth, tired all the time, and no “get up and go”. If I’d done too much any day, that was it for me for the rest of the day.

I went to Liverpool hospital and I saw a nurse and spoke with her for an hour or more about hep C, HIV and what could happen.

Lucky my work was split shifts so I could come home for a nap. It got to the stage where I thought I’d had enough. I was starting to gag on the pills every day but I was not going to give up.

Then next appointment I missed and it went downhill from there. Me and my missus and three kids were evicted from where we lived so we lived in the car for a while. My missus was going through chemo for polyps so she was sick so I looked after the kids. After six months of this, my mum and dad found out and told me to get up there – to QLD. I went up there and got a job, rented a house and then got my family up there. Things were going back to normal and things were great. So I went back to see a doctor about my hep C again. She got the ball rolling, I got a referral to Rockhampton hospital an hour and half away. They were great and seemed genuinely concerned about my hep C. We talked about treatment and I said yes. So now I was having all these tests to make sure everything was okay. After a couple more months, they showed me the treatment kit with everything in it. It seemed like I was ready to start and they told me to come back after Christmas. This was just in case I had a few beers over the Christmas period. January came around and they said I had a little “wiggle” in my heart. So I spent the next 12 months going to Brisbane and Rockhampton hospitals for tests to make sure that I could start the hep C treatment.

www.hep.org.au

I was down but not out and I remember one day in the waiting room. I started to read the Hep Review magazine while I waited to see the doctor and a story caught my eye about a lady and her eight year old son who had hep C. I thought what the young fellah must have gone through but I was an adult and feeling like I’d had enough. “Toughen up,” I said to myself. Now, I only have two weeks left and I’m feeling better and I’m on the way out that doctor’s door! I’d like to thank the two healthcare nurses for their support. It was good to chat about things every month. It made me feel better and able to push on. They made all the appointments for me, and if I had to do it, the treatment would’ve failed, as there were low points when I couldn’t be bothered. I have been negative since week eight and I feel like I have beaten it but am hanging on my posttreatment follow-up tests. Good luck to everyone who’s on treatment. I hope you beat it! • “Duncan” is not the author’s real name. He asked to remain anonymous. He has asked for his $50 payment to be donated to kids with cancer. We’ve passed it on to the Kids with Cancer Foundation.

feature

Brett – also from rural NSW and who featured in our previous edition – emphasises to peers who he meets that liver biopsy is no longer required for treatment. He hates the idea of people holding off from hep C treatment because of fears about biopsies.

Brett Wilson, NSW. Image by Exposition by RAF.

Like “Duncan”, he wants to see better access to hep C treatment for people in rural NSW.

Hep Review magazine

Edition 81

September 2013

promotions

Live Well recruiting

Book early for your place in the next Central Coast...

Hep C: Take Control Program Want to meet other people with hep C? Want to learn what you can do to stay healthy and get more out of life?

Our Live Well program goal is to help people achieve better health outcomes through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the health care system. We welcome anyone who is living with hep C and is looking for ways to improve their health and well-being. Our group workshops are free, confidential and suitable for everyone’s needs. We have also invited a number of experts in diet, exercise, alcohol and other drugs, mental health and treatment to be guest speakers. • Duration: One weeknight each week for six weeks.

In a supportive environment, participants will work together over four weeks to share and develop skills to better manage their hep C and improve their symptoms. Some topics to be covered are: • Dealing with stigma and discrimination • Better management of hep C and its effects on your life • Treatment and dealing with side-effects • Making healthy lifestyle changes

• Who: You and other people with hep C • Where: Surry Hills (near Central Station)

live well

The course will be facilitated by Jennie Hales and Amanda Burfitt, from the Central Coast Local Health District. There will be an emphasis on respecting the privacy and confidentiality of all participants. For more info about Take Control, please phone Jennie on 4320 2390 or email: jhales@nsccahs.health.nsw.gov.au

Are you living with hep C and looking for ways to maximise your health? live well can help Come join our group, meet others who have hep C and get information that can help you improve your health and wellbeing.

These courses are held at Wyong Central 38A Pacific Hwy, Wyong 42

www.hep.org.au

Image / Leonard John Matthews / flickr

Interested? Contact Fungi on P: 9332 1853 or E: ffoto@hep.org.au ALL GROUPS ARE CONFIDENTIAL AND FREE

promotions

hep review magazine photo call A picture tells a thousand words, the old saying goes, and we really want your pictures in Hep Review magazine. We want our “voices” to ring loud in Hep Review and for many years we’ve recruited people’s personal stories. We want to go further, though. It makes sense to get pictures of us and our health workers and our clinics into our magazine. Who wants to see images found on the internet which could be from anybody, anywhere (often overseas)? If you like taking photos and have a decent camera, why not become a roving hep C photographer? We’ll pay $50 for each image that we publish in Hep Review and $100 for Hep Review cover shots.

Image / Pa

ul Harvey

Does it sound too easy? Well, there is a bit of work involved. We want pictures of people and this means we need permission sign-offs from the people in the photos. We also need high-definition images; pictures that are between 2 to 5MB and even bigger for covershots. • Further conditions apply. If you’re interested, please contact Paul Harvey on 02 9332 1853 or pharvey@hep.org.au Also see our call for personal stories, page 6.

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

Hep Review magazine

Edition 81

September 2013

promotions

CHAMPIONS UNITE Want to find out the latest about hep C treatment, advocacy, harm minimisation, education, patient services and resources? Subscribe to The Champion e-Newsletter from Hepatitis NSW. Delivered to your email inbox once a month, The Champion is a great way to stay up to date on hep C related events and developments across NSW. Share your views: subscribers can even submit their own articles for publication! • To subscribe, just send an email to campaigns@hep.org.au with your name.

Hepatitis and FOOD FoodSURVEY survey HEPATITIS C C AND The Hepatitis C and Food survey has been designed to gain a better understanding of what you think about nutrition and the current Hepatitis C and Food brochure. This is an anonymous survey and your answers will help improve the current brochure and potentially inform other nutrition promotion programs for people with hepatitis C in NSW. All participants can choose to go in the draw for a $50 Coles Gift Card. Please go to the following links to complete the survey. If you have further enquires please contact Louise Houtzager at The Albion Centre, phone 9332 9611. The survey will be available until late August, 2013. •

Hepatitis C and Food brochure: http://www.hep.org.au/documents/HepC-Food-980KB.pdf

•

If you are living with hepatitis C and live in NSW, please complete the survey at: https://www.surveymonkey.com/s/CCRRL8V

•

If you are a health care provider working with people living with hepatitis C in NSW, please complete the survey at: https://www.surveymonkey.com/s/CCNCQRT

The study is a collaborative project between The Albion Centre, Royal Prince Alfred Hospital and Hepatitis NSW. This study has been approved by the South Eastern Sydney Local Health District – Northern Sector Human Research Ethics Committee. Any person with concerns or complaints about the conduct of this study should contact the which is nominated to receive complaints from research participants. You should contact them Research Support on 02 9382 3587, or email ethicsnhn@sesiahs.health.nsw.gov.au and quote HREC ref no 12/275. 2012 AlbionCentreHepCandFood Surveyadvert pdf Version 2: 10/12/2012

www.hep.org.au

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Background image by Rice and D / Flickr

Image via realfoods.co.uk

Want to alternate your alcoholic drinks with something soft but still with a bit of bite? • Soda water with a squeeze of lemon • Tonic or soda water diluted with fruit juice and bitters. Hep Review magazine

Edition 81

September 2013

hep chef

Broccoli and potato soup in 15 minutes! Broccoli is in season in winter (read cheap) so why not snuggle up in front of the telly with a big hearty bowl of vegetable soup. 1 tablespoon olive oil 1 large brown onion, chopped 2 garlic cloves, crushed 1kg or so broccoli, cut into florets 2 potatoes, peeled, chopped 1 cup (or cube) of vegetable or chicken stock Toasted bread – according to your appetite Method Step 1 Heat oil in a large saucepan over medium-high heat and then add onion and garlic, cook, stirring, for 3 minutes or until soft. Step 2 Add broccoli, potato, stock and two cups cold water. Cover and bring to the boil. Reduce heat to low. Simmer, stirring occasionally, for 10 to 15 minutes or until potato is tender. Remove from heat. Use a stick blender or potato mash until smooth. Season with pepper, serve with toast and a bowl of dipping olive oil Want more? You can also add red lentils and curry powder with the stock for an Indian version, or grated cheese and cream for a “comfort-food” version.

Do you want to see your favourite recipe here? Simply send it in to us - see contact details on page 67.

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Do you want to see your recipe here? Simply send it in to us – see address on page 67.

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an australian ost overview Whatâ&#x20AC;&#x2122;s the state of play with Opioid Substitution Treatment in Australia? Peter Higgs summarises the most recent national report, released in June this year.

eople who have become dependent on opioid drugs (such as heroin, morphine or codeine) may receive a replacement oral pharmacotherapy drug (such as methadone or buprenorphine) as part of their treatment. In summary Almost 47,000 Australians received pharmacotherapy treatment for their opioid dependence on a snapshot day in June 2012. The number of people receiving opioid pharmacotherapy treatment has almost doubled since 1998 (from around 25,000 people), but growth in client numbers has slowed in recent years (to less than 1% growth a year from 2010 to 2012). Methadone continues to be the drug most commonly prescribed in OST; however, the form in which buprenorphine is prescribed is changing. Around two-thirds (68%) of clients received methadone in 2012, with the proportion remaining relatively stable since 2006. The remaining third (32%) received one of two forms of buprenorphine. Of these, the proportion receiving buprenorphine only has fallen (from 23% to 13%) while the proportion receiving buprenorphine combined with naloxone has risen (from 6% to 19%) over the same period. Naloxone (Narcan) is added to buprenorphine to deter injection of the medication. Opioid pharmacotherapy clients are getting older. In 2012, around two-thirds (69%) of clients were aged 30 to 49, and this proportion has been fairly consistent since 2006. However, from 2006 to 2012 the proportion of clients aged less than 30 halved (from 28% to 13%), and the proportion of clients aged 50 and over doubled (from 8% to 18%). This suggests an ageing population of clients in pharmacotherapy treatment.

Males and Indigenous people are overrepresented in pharmacotherapy treatment. Around two-thirds (65%) of clients receiving pharmacotherapy in June 2012 were male. Where reported, 9% of clients identified as Indigenous. Indigenous people were almost three times as likely to have received pharmacotherapy treatment as the population as a whole. Prescriber numbers have increased, and most work in the private sector. There were 1,768 prescribers of opioid pharmacotherapy in Australia in 2012, an increase of 14% from 2011. On average, each prescriber treated fewer clients, with the ratio of clients per prescriber falling from 30 in 2011 to 26 in 2012. The majority of prescribers worked in the private sector (82%) and were authorised to prescribe more than one type of pharmacotherapy drug (70%). Most dosing points were located in pharmacies and in urban areas. Most clients need to attend a dosing point regularly to take their opioid pharmacotherapy drug under supervision. In 2011-12 there were 2226 dosing point sites in Australia, and nine in 10 (88%) were located in pharmacies. The majority of dosing points were located in major cities (60%) and inner regional areas (24%), with only one in 50 (2%) located in remote or very remote areas. â&#x20AC;˘ Summarised by Dr Peter Higgs, National Drug Research Institute, from the National opioid pharmacotherapy statistics annual data collection 2012 report: http://tinyurl.com/ m6zwy4d

Hep Review magazine

Edition 81

September 2013

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HELLO HEPATITIS HELPLINE I shared injection equipment and I’m worried I’ve caught hep C. What tests are used to find hep C?

About one in four people who get hep C virus will clear it naturally. The three people who don’t will have chronic hep C for the rest of their lives – unless they are successfully treated. The word “chronic” simply means long-term or ongoing. Testing is the only way to tell whether you are infected or not after exposure. Antibody tests A GP will recommend antibody testing if a patient reports past or current hep C risk factors, or as a result of abnormal liver function test results. Our bodies produce antibodies which float around in our blood and are part of our defence against some germs and infections (our immune system). The hep C antibody blood test looks for specific antibodies against the hep C virus. A positive result shows that a person has contracted hep C some time recently or in the past. In one in four cases, a person’s immune system is able to get rid of their hep C infection but they will still carry antibodies. Because of this, a positive antibody tests result doesn’t necessarily mean a person has an ongoing chronic infection. PCR tests These are tests that look for genetic material from the hep C virus and show whether or not the virus is currently present in a blood sample. The name “PCR” stands for polymerase chain reaction which is a technique of amplifying and measuring bits of the hep C virus genetic makeup. It is sometimes called hep C “RNA” testing.

There are three types of PCR test which provide different information about someone’s hep C infection: • PCR viral detection test – sometimes called the qualitative test, the PCR viral detection test is mainly used to confirm antibody test results. If someone is PCR positive, then it indicates they have a current hep C infection. • PCR viral load test – sometimes called the quantitative test, this test measures the amount of virus in someone’s blood. This test is used when people have hep C treatment as it can tell whether or not the treatment is working. • PCR viral genotype test – PCR genotype tests can determine people’s hep C strain (or genotype). This is important if someone is considering hep C antiviral treatment as their genotype determines their length of treatment and how likely treatment is to succeed. PCR tests cost $100 or more but are available free-of-charge through Medicare in certain situations. IL28 gene test The hep C IL28 gene test is a blood test that looks at a person’s genetic makeup and shows whether or not they are likely to respond to combination treatment. This would be useful information for people with genotype 1 who are wondering whether or not to go on treatment. The tests became available in September 2010 and most GPs across NSW can have the test carried out. The tests currently cost around $100 and involve taking a sample of blood. For more information about this, contact the Hepatitis Helpline on 1800 803 990. • Fungi Foto, Hepatitis NSW.

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Hep Review magazine

Edition 81

September 2013

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keyhole to our work Continued from page 6.

Our information and resources team manages:

Education and development program

• The highly regarded website www.hep.org.au which is currently undergoing a major rebuild and development.

• Education sessions for health, youth, corrections and other workforces in both metro and rural areas (often involve a C-een & Heard speaker) • NSW Hepatitis Awareness Week and World Hepatitis Day are accompanied by Awareness Week grants of up to $2,500 • HepLink is a key interagency and workforce development network • Our Aboriginal Projects team works in close collaboration with key Indigenous Australian health services • Going Viral is a major new youth workforce development project that is a funded collaboration with five major NSW Local Health Districts (LHDs). • Other workforce development initiatives funded specifically by other NSW Health’s LHDs involve prevention education involving injecting transition interventions.

• Hep Review is our flagship quarterly magazine • Transmission Magazine is a quarterly comicstyle magazine that reaches people at particular risk of contracting hep C • Our Drawing Them In project involves people from priority populations contributing directly – through focus groups – to the Transmission Magazine storyline, character design and script. • Other information resources include a wide range of factsheets and booklets, all involving consumer input. The most recent information resource is the popular Two Hep C Questions: What will happen to me? Should I go on treatment? Hepatitis NSW

Hepatitis C factshee ts Sex and hep C transm ission Introduction General transmission

of hep C Hep C transmission during sex – is it possible? Sex & relationships Safer sex and sexu ally transmitted disease s

Men who have sex

with men

Further information

Introduction Hepatitis C (also call ed hep C) is not clas sified as an STI (sexually tran smissible infection) alth ough people, unable to iden tify any other risk fact ors, may believe they may have contracted hep C sexually.

General transmission

of hep C

Hep C is most common ly transmitted through blood-to-blood contact , i.e. when the blood of someone with the viru s enters the bloodstr eam of someone else. This can occur through: • sharing needles or syringes or any othe r drug injecting equipment • unsafe tattooing or body piercing Less common means are from mother to bab y at birth (vertical tran smission)

There is no docume nted evidence that breastfeeding spreads hep C. If a nursing mot her’s nipples are cracked and bleeding, she sho uld stop nursing temporarily unti l her nipples are hea led. Before hep C tests wer e introduced in Australi a (in 1990), some people received contaminat ed blood transfusions or blood products. All blood don ations in Australia are now screened for hep C. Being hep C positive (also called “having chronic hep C”) means that you have tested pos itive with the hep C PCR bloo d test. Antibody tests can’t confirm whether or not you actually have hep C.

HCV transmission during sex – is it possible?

Some research sugges ts that a small percenta ge of people do contrac t hep C through bloo dto-blood contact that may occur during sex ual contact. Thus, transmi ssion of hep C during sex is seen as possible but is believed to be rare . If hep C is transmitted during sex, it is likely to be through blood-to-blo od contact. This emp hasises the need for safe sex practices where ther e is a risk of blood-to-blood contact, e.g. sex whe n you have cuts or lesions on or close to the gen itals , during anal sex (bec ause the lining of the anus is easily broken), duri ng menstruation and during sexual practices that may involve bleeding or broken skin. Some studies sugges t a slightly increased rate of hep C transmission in people with multiple sexual partners and high leve ls of sexual activity. These studies, though, hav e usually found it diffi cult to exclude other possibl e routes of transmissio n, e.g. injecting drug use. Research increasingl y suggests the risk of transmission of hep C through sexual con tact among heterosexua l people is minimal.

Hep Review magazine

Hepatitis NSW’s range of factsheets Are you aware of the relatively low level of risk around transmission of hep C during sex? We’ve recently updated our Sex and hep C transmission factsheet. To view the complete four page factsheet and our range of 40 other factsheets please go to http://tinyurl.com/3f2gx2p

Edition 81

September 2013

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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.

www.hep.o rg .a u –

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).

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• Hepatitis NSW

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

Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit

www.hepatitisc.or

g.au

or call the

Hep C Helpline (see over)

www.hep.org.au

Don’t discr

iminate

Hepatitis C is hard to catch.

Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. People with hep C come from all backgroun ds. accurately ass You can’t ume anythin about them. g

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

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The new trea tment for he p interferon + ribavirin + an C genotype 1 involves taking pegy other drug (e Taking this lated ither bocepr treatment m evir or telepr eans you ha clearing the evir). hep C virus ve an in creased ch and your trea ance of tment time is likely to be sh orter.

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

Hep C treatment as hep C prevention?

raditionally we have thought of Australia’s Needle and Syringe Program (NSP) and education as being the cornerstones for HCV transmission prevention. These have certainly worked relatively well over the years. In the decade 2000-2009, NSP was estimated to have prevented 97,000 HCV transmissions, as well as prevent 32,000 HIV transmissions among people who inject drugs. Despite this, thousands of new HCV infections continue to occur when people share equipment used to inject drugs. Of course both NSP and education efforts need to be scaled up to enhance their effectiveness. As we head towards interferon-free, directacting antiviral therapies, though, we have an exciting and innovative opportunity to bring about much better results in preventing hep C from transmitting to new people in the first place. This involves lowering the prevalence pool where transmissions occur. At the inaugural Kirby Institute Symposium at the University of NSW on 27 June 2013 there were welcome presentations on two new initiatives. The first, modeling research, is described on page 38 in this edition. The second is more exciting because it will soon be a reality. Professors Greg Dore and Tony Butler of the Kirby Institute reported on the new STOP-C research project. A two-phase study will see people in both maximum and medium security prisons receive early access to new interferonfree treatments.

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.

www.hep.org.au

With easy-to-take medication, short duration therapy and high cure rates with no or few side effects, the intention is to treat as many people as possible who are at risk of passing on their HCV infection to others – and so reduce the capacity for HCV transmission to take place. Given that hep C prevalence is so high in prisons (32% in NSW prisons as opposed to 1% in the broader population), prison is a very appropriate setting for this project. It is also very appropriate given that NSP is not available in prisons. It is also important to focus welcome attention on some of the most marginalised people living with a marginalised health condition: hepatitis C. • Hepatitis NSW

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You can join or rejoin Hepatitis NSW online at www.hep.org.au OR by filling out the membership form below. Please complete the appropriate section (A or B or C) See the table at the bottom for membership types. Are you a new or an existing member? (please tick one) I want to join for the first time I am renewing my membership I currently receive Hep Review but want to become a member

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Hep Review magazine

Edition 81

September 2013

research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on viral hepatitis. These research update pages attempt to meet this need. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis 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. Our online version of Hep Review is at www.hep.org.au and contains live web links to the various sources shown in blue text. Another great reason to go online for your Hep Review magazine.

Quick links from BBV News Trials database: MedPage Today is partnering with TrialReach to provide workers and affected communities with a way to search for current clinical trials across a full range of diseass. Visit http://www.medpagetoday.com/TrialReach/

Socioeconomic status and hep C Denmark – It is unknown whether socioeconomic status (SES) is a risk factor for hep C infection or a prognostic factor following infection.

Higher risk in HIV patients with hep C: Patients with HIV and hep C coinfection had nearly a ninefold level of risk for liver-related death compared with patients with HIV monoinfection. http://tinyurl.com/bhopjvw

From Danish nationwide registries, we obtained information on three markers of SES: employment, income, and education. In a case control design, we examined hep C patients and controls, adjusting for the SES markers, comorbidity, and substance use.

Youth and hep C: Marginalised young people and drugs, injecting and hep C. Visit http://tinyurl. com/l36uhor

We concluded that low SES was associated with an increased risk of hep C infection and with poor prognosis in patients with hep C.

Liver cell cure hope: Melbourne researchers have created spheres of liver tissue with their own pseudo blood vessels – the first step towards engineering larger lobes of liver to make some human transplants unnecessary. http://tinyurl. com/342ml

Socioeconomic status in HCV infected patients – risk and prognosis. Omland LH, et al. Clinical Epidemiology 2013:5 163–172 • Abridged from dovepress.com http://tinyurl. com/l8vccnl

• Above seperate four articles are abridged from BBV News, via j.johnson@latrobe.edu.au If you don’t have internet access, please phone the Hepatitis Helpline for more information on the above studies.

Virology update Headlines from the latest Research Review: Lack of clinical and histological progression of chronic hepatitis C in individuals with true persistently normal ALT: the result of a 17-year follow-up. Histological improvement of long-term antiviral therapy in chronic hepatitis B patients with persistently normal alanine aminotransferase levels.

www.hep.org.au

Virological response to entecavir is associated with a better clinical outcome in chronic hepatitis B patients with cirrhosis. • Keep up-to-date on virology research. Subscribe to Research Review, edited by Professor Stephen Riordan ... http://www. researchreview.com.au/

research updates Hep C treatment improves brain function

Effectiveness of nurse-led treatment in prison

Germany – People with chronic hep C who responded to treatment with pegylated interferon and ribavirin experienced a subsequent improvement to neurocognitive performance in a recent study.

Australia – The global burden of disease attributable to chronic hep C is very large, yet the uptake of curative antiviral therapies remains very low, reflecting the marginalised patient population and the arduous nature of current treatments.

Using the Test for Attentional Performance (TAP), researchers evaluated the neurocognitive capabilities of 168 adult patients with hep C before and after weekly treatment with peginterferon alfa-2b and weight-based ribavirin for 24 or 48 weeks. Participants took the computer-aided TAP test at baseline and 12 months or longer (range 12 to 48 months) after completing therapy.

The safety and effectiveness of a nurse-led model of care of inmates with chronic hep C was evaluated in three Australian correctional centres. The model featured protocol-driven assessment, triage, and management of antiviral therapy by specifically trained nurses, with specialist physician support utilising telemedicine. Outcomes were evaluated qualitatively with key informant interviews, and quantitatively with patient numbers completing key clinical milestones and adverse events.

Factors assessed by the TAP test included: • Alertness: Evaluates reaction time via a task involving visual stimulus presented with and without acoustic cues. • Divided attention: Assesses the ability to pay attention simultaneously to multiple aspects of visual or acoustic tasks. • Vigilance: Measures sustained attention to acoustic and visual stimuli. • Working memory: Evaluates a participant’s short-term memory. Sustained virologic response (SVR) to treatment occurred in 69% of cases. Patients who experienced SVR indicated improved performance in three categories: vigilance, divided attention and working memory. “Our data confirm previous reports that in patients with chronic hep C, neuropsychological performance is affected not only by highdose interferon alfa-2b therapy, but also by the infection per se; furthermore, this latter impairment is potentially reversible after successful virus eradication,” the researchers concluded. “We suggest that the potential benefit of a successful therapy for chronic hep C with respect to the patients’ neurocognitive function should be considered as an additional treatment indication in this disease.” Kraus MR, et al. Hepatology. 2013 Jan 8. [Epub ahead of print]

A total of 391 patients with chronic hep C infection were enrolled, of whom 141 (36%) completed the clinical and laboratory evaluations for eligibility for antiviral therapy over 24 months. Treatment was initiated in 108 patients (28%), including 85 (79%) triaged for specialist review conducted by telemedicine only. The demographic and clinical characteristics of the patients who entered the model and completed workup and those who initiated treatment featured a high prevalence of individuals of indigenous background, injecting drug users, and those with psychiatric disorder. Serious adverse events occurred in 13 of 108 treated patients (12%) with discontinuation in 8 (7%). The sustained virologic response rate among those with complete follow-up data (n = 68) was 69%, and by intention-to treat analysis was 44%. This nurse-led and specialist-supported assessment and treatment model for inmates with chronic hep C offers potential to substantively increase treatment uptake and reduce the burden of disease. Safety and Effectiveness of a Nurse-Led Outreach Program for Assessment and Treatment of Chronic Hepatitis C in the Custodial Setting. Andrew R. Lloyd, et al. Clinical Infectious Diseases. [Advance access] • Abridged from oxfordjournals.org (29 Jan 2013) http://tinyurl.com/pnolvhj

• Abridged from healio.com (25 Jan 2013) http://tinyurl.com/bakkwgu

Hep Review magazine

Edition 81

September 2013

research updates Running a user-led safer injecting campaign

Hep C among HIV positive men who have sex with men

Canada – Unsafe injection practices play a major role in elevated rates of morbidity and mortality among people who inject drugs (IDU). There is growing interest in the direct involvement, of people who inject, in interventions that seek to address unsafe injecting. This study describes a drug user-led safer injecting education campaign, and explores facilitators’ experiences delivering educational workshops.

USA – Transmission of hep C in a sexual context is an emerging epidemic among HIV-positive men who have sex with men (MSM). Hep C may be under-recognised in this population, historically thought to be at low risk.

We conducted semi-structured qualitative interviews with eight members of the Injection Support (IS) Team who developed and facilitated a series of safer injecting education workshops. Interviews explored facilitators’ perceptions of the workshops, experiences being a facilitator, and perspectives on the educational campaign. Interviews were transcribed verbatim and a thematic analysis was conducted. IS Team facilitators described how the workshop’s structure and content enabled effective communication of information about safer injecting practices, while targeting the unsafe practices of workshop participants. Facilitators’ identity as peer users enhanced their ability to relate to workshop participants and communicate educational messages in language accessible to workshop participants. Facilitators reported gaining knowledge and skills from their involvement in the campaign, as well as positive feelings about themselves from the realisation that they were helping people to protect their health. Overall, facilitators felt that this campaign provided users with valuable information, although facilitators also critiqued the campaign and suggested improvements for future efforts. This study demonstrates the feasibility of involving users in educational initiatives targeting unsafe injecting. Findings illustrate how peer involvement in prevention activities improves relevance and cultural appropriateness of interventions while providing individual, social, and professional benefits to those peers delivering education. ‘On the same level’: facilitators’ experiences running a drug user-led safer injecting education campaign. Cody Callon, et al. Harm Reduction Journal 2013, 10:4 • Abridged from harmreductionjournal.com (6 Mar 2013) http://tinyurl.com/d3fv9tj

www.hep.org.au

We determined the prevalence and incidence of hep C among HIV-positive men at Fenway Health between 1997 and 2009. We describe characteristics associated with hep C. Of 1171 HIV-positive men, of whom 96% identify as MSM, 1068 (91%) were screened for hep C and 64 (6%) had a positive hep C antibody (Ab) result at initial screening. Among the 995 men whose initial Ab result was negative, 62% received no further Ab testing. Among the 377 men who had additional Ab tests, 23 (6%) seroconverted over 1408 person-years, for an annualised incidence of 1.63 per 100 personyears. Among the 87 HIV-positive MSM diagnosed with prevalent or incident hep C, 33% reported history of injection drug use, 46% noninjection drug use (NIDU), and 70% sexually transmitted infections (STIs). Sixty-four (74%) of hep C positive MSM developed chronic HCV; 22 (34%) initiated hep C treatment and 13 (59%) of treated persons achieved a sustained virologic response (SVR). Prevalent and incident hep C, primarily acquired through nonparenteral means, was common in this HIV-positive population despite engagement in care. STIs and NIDU were common among HIV/hep C coinfected MSM. SVR rates were high among those who underwent hep C treatment. All sexually active and/or substance-using HIV-positive MSM should receive routine and repeated screening to allow for early diagnosis and treatment of hep C. • Abridged from oxfordjournals.org (5 Feb 2013) http://tinyurl.com/orvt467

research updates SVR associated with lower risk for diabetes in hep C

Effectiveness of fincol-type disinfectants

USA – People with hep C who achieve a sustained virologic response after treatment have a lower risk of developing type 2 diabetes, according to research presented at Digestive Disease Week.

Germany – Hep C cross-contamination from inanimate surfaces or objects has been implicated in transmission of hep C in healthcare settings and among people who inject drugs. We established hep C-based carrier and drug transmission assays that simulate practical conditions to study inactivation and survival of hep C on inanimate surfaces.

“There are intrahepatic factors and extrahepatic factors that link diabetes and hep C,” Sarah Hyder, MD, a gastroenterology fellow at Brown University, told Infectious Disease News. “Considering this link, we postulated that successful treatment of hep C could decrease the risk for new-onset diabetes in these patients.” Hyder and colleagues used data from the Veterans Affairs Clinical Case Registry to identify patients with hep C, without pre-existing diabetes, who initiated antiviral treatment between 1998 and 2007. They evaluated the incidence of diabetes among patients who achieved sustained virologic response (SVR) and those who did not clear the infection. Among the 27,636 patients, 7,617 (27.5%) achieved SVR and 15,243 (55.8%) did not. After a median follow-up of 5 years, 831 of the responders (11%) developed diabetes, and 2,428 of the non-responders (16%) developed diabetes. After controlling for known diabetes risk factors, SVR was independently associated with decreased incidence of new-onset diabetes. In addition, increasing age, non-white race, hypertension and cirrhosis were associated with an increased risk for new-onset diabetes. “There are a lot of patients who don’t achieve SVR, either because they can’t tolerate treatment and discontinue, or because they have a resistant genotype of hep C,” Hyder said. “Hopefully, in the era of non-interferon based regimens, patients will be able to tolerate therapy better, and we’ll hopefully see an increased clearance rate and a decreased risk for hep C-associated diabetes. Successful treatment of hep C will provide significant benefits to health outcomes beyond liver-related morbidity and mortality.” • Abridged from healio.com (20 May 2013) http://tinyurl.com/olv8kf9

Studies were performed with authentic cell culture derived viruses. Hep C virus was dried on steel discs and biocides were tested for their virucidal efficacy against hep C. Infectivity was determined by a limiting dilution assay. Hep C virus stability was analysed in a carrier assay for several days or in a drug transmission assay using a spoon as cooker. Hep C virus can be dried and recovered efficiently in the carrier assay. The most effective alcohol to inactivate the virus was 1-propanol, and commercially available disinfectants reduced infectivity of hep C to undetectable levels. Viral infectivity on inanimate surfaces was detectable in the presence of serum for up to five days, and temperatures of about 65-70C were required to eliminate infectivity in the drug transmission assay. These findings are important for assessment of hep C transmission risks and should facilitate the definition of stringent public health interventions to prevent hep C infections. [“These results show that ingredients like... quaternary ammonium...have a high virucidal efficacy against hep C,” the report said.] Inactivation and Survival of Hepatitis C Virus on Inanimate Surfaces. Juliane Doerrbecker, et al. JID 2011:204 (15 December) 1830-1838 • Abridged from ncbi.nlm.nih.gov (19 Oct 2011) http://tinyurl.com/qdzwyhl Fincol (provided in NSW prisons) is a quaternary ammonium compound and, if used correctly, is effective in killing the hep C virus.

Hep Review magazine

Edition 81

September 2013

pharmaceutical treatment Triple combination treatment

Standard combination treatment

Triple combination treatment for hep C consists of either Incivo (telaprevir) or Victrelis (boceprevir), taken with standard combination treatment (peginterferon alpha and ribavirin).

Standard combination treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily. Standard combination treatment lasts between 24 or 48 weeks (depending on a personâ&#x20AC;&#x2122;s genotype and liver condition) and gives a 50-80% chance of cure (depending on a personâ&#x20AC;&#x2122;s genotype).

This new treatment is for people aged 18 years and over who have hep C genotype 1 and compensated liver disease (no serious liver damage). Triple combination treatment generally lasts between 24 and 48 weeks (depending on a personâ&#x20AC;&#x2122;s treatment history, liver condition and/or response) and gives a 70-80% chance of cure. Treatment duration is generally shorter under triple combination treatment compared to standard combination treatment. Studies show there is increased risk of anaemia and skin rash, and other side effects. These will be explained in detail by your treatment team and will be carefully monitored by them.

Subsidised combination treatment for people with chronic hep C is available to people (aged 18 years or older) who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive. Contraception: Women of childbearing age undergoing treatment must not be pregnant or breastfeeding, and both the woman and her male partner must use effective forms of contraception (one for each partner).

Men undergoing treatment and their female partners must use effective forms of contraception (one for each partner). Female partners of men undergoing treatment must not be pregnant. Duration and genotypes People with genotype 1, see Triple combination treatment, left. For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring People with genotype 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.

For more detailed information on current treatment options, see our Treatment Overview factsheet... http://tinyurl.com/bqbrwr9

CAUTION Treatment with interferon has been associated with depression and suicide in some people. If you have any history of suicide ideation or depressive illness, talk to your treatment team. They will be able to provide additional treatment monitoring and support. A potentially serious side-effect of ribavirin, telaprevir or boceprevir is anaemia (an imbalance of red blood cells). During treatment your blood is monitored closely, especially in the first few weeks, and if problems arise, doses of your treatment drugs may be lowered or other drugs may be given to help manage your side effects. Skin rash is another side effect that is closely monitored. Ribavirin is a category X drug and must not be taken by pregnant women. 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 People with genotype 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, people with genotype 2 or 3 and cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. You and your clinician should monitor your level of liver damage. Fibroscan is the preferred option although in some cases, liver biopsy may be suggested. NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Phone the Hepatitis Helpline for the contact details of your nearest centre and to find out where your nearest Fibroscan is located. In NSW, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW For more information, please phone the Hepatitis Helpline and see our Two Hep C Questions booklet.

Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects. A similar trial, but on a larger scale, was later carried out. A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (contact the Hepatitis Helpline regards the above mentioned trials).

• Will they consult with your GP about your 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 magazine

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 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.

• Will they consider all relevant diagnostic testing?

• How has this complementary therapy helped other people with hepatitis?

If you are not satisfied, shop around until you feel comfortable with your practitioner.

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.

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.

• Is the treatment dangerous if you get the prescription wrong?

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer.

If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 64) for more information and the contact details of relevant professional associations. • Hepatitis NSW. For more information, please phone the Hepatitis Helpline.

Edition 81

September 2013

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. • 1800 803 990 (freecall). 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 the Helpline (above). Let’s Talk A free, counselling service offering face-to-face, telphone and online sessions for people in NSW. There is a team of qualified counsellors and a psychologist, all with specialised knowledge of hep C. Contact the Helpline (above) for more information. Live Well Group workshops that help people achieve better health through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the health care system. Contact the Helpline (above) for more information. 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 Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales detainees and prison staff. Call this free and confidential service by using the prison phone or by calling the 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

www.hep.org.au

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). NSPs Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Helpline. Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local 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

support and information services The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au

This is a monthly meeting for people living with hep C, supportive others and on treatment, or thinking of treatment. The meeting is facilitated by healthcare professionals. For more information contact Helen Young 6656 7865.

Additionally, the Hepatitis Helpline distributes information resources in some languages.

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.

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 AHCS online hep C support forum Australian Hepatitis C Support â&#x20AC;&#x201C; an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338. Gosford: 5.30pm-7pm on the 3rd Thursday of each month at the Health Services Building, Gosford Hospital. Wyong: 1pm-2.30pm on the first Thursday each month at the Wyong Health Centre, 38 Pacific Highway, Wyong. 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.

Nepean Wednesday groups This is a relatively new group open to people who are considering or preparing for treatment, undergoing treatment and post treatment. Family and significant others are welcome to attend. The group meets every two weeks at the Nepean Centre for Addiction Medicine, Nepean Hospital on Wednesdays between 10.30 and 12.00. The first session for 2013 is on 9 Jan and will be a mixed session but each alternate session will be for women only. Our aims for this group are to provide social support, information and encouragement to people affected by HCV. For more information please contact George Klein on 0411 028423. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0412 126 707 or 6588 2750. Wollongong hep C support group A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am-11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.

Coffs Coast Hep C support group

Want to get involved in lobbying for, or, supporting hep services in your local area?

Contact David Pieper, the Hepatitis NSW C me Coordinator, at dpieper@hep.org.au

Hep Review magazine

Edition 81

September 2013

promotions The most precious gift

The rising impact of chronic diseases in the NT and the shared interest and desire of individuals and organisations to reduce the rate of chronic diseases and its complications brought about the creation of the Chronic Diseases Network in 1997. Wherever you work in Australia, please visit our site and learn more about CDN.

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.

www.chronicdiseasesnetwork.nt.gov.au

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.

17th Annual

Chronic Diseases Network Conference 2013

September 9 - 10, Darwin Convention Centre

Keynote Speakers

Please phone 02 6198 9800.

Dr Christine Connors Program Leader, Chronic Conditions Strategy Unit, NT Department of Health

Kate Warren Research Associate, University Department of Rural Health, Centre for Regional Engagement, University of SA

A historical perspective – september 1998 Prof Malcolm Battersby

Director, Human Behaviour and Health Research Unit & Course Leader of Mental Health Sciences Program, Flinders University

Prof Richard Osborne

Co-Director, Population Health Strategic Research Centre & Head, Public Health Innovation & Associate Head of School (Research), School of Health and Social Development, Deakin University

Carolynanha Boyede

Quitline Counsellor, Cancer Council SA

Key Dates

Headlines from 15 years ago: Registration now open

3rd May 2013 - Abstract submission closes

28th June 2013 - Early bird registration closes

Why attend?

• Neglected Epidemic report calls for urgent government action • What’s been happening overseas with hep C? • Register Education for people who use illicit drugs now: www.cdnconference.com.au • Wanting but not wanting to know • HCV genotypes • US action against Schering-Plough • Clinton administration endorses yet knobbles US needle exchanges • Canadian Red Cross files for bankruptcy • The Global HCV pandemic • UK care fails those with hep C • New peak body formed (Hepatitis Australia) If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy. Self management improves the ability of individuals to manage their conditions effectively. It is a core component of the strategic direction of health organisations due to the rapid rise of chronic conditions.

What will you gain from the conference?

Strategies to empower clients to self manage their chronic conditions using a partnership approach.

Who should attend?

All health professionals, managers, policy makers and consumers.

Teachers: the conference will provide access to research and knowledge outside your school and can constitute up to 14 hours for the purpose of the TRB professional development requirement. Teachers are reminded to log attendance at this activity on the professional development log and reference the activity against the relevant professional standard.

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

www.wdp.org.au 66

www.hep.org.au

• Taken from The Hep C Review, Edition 23, December, 1998.

noticeboard

acknowledgements Editor/design/production: Paul Harvey

Upcoming events

Editorial committee: Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Andrew Smith Jeffrey Wegener

World Hepatitis Day – 28 July http://tinyurl.com/bjs93na NSW Hepatitis Awareness Week – 22 to 28 July http://tinyurl.com/b559t66 National Hepatitis Health Promotion Conference, Sydney, 14-15 November http://tinyurl.com/3pr4dcv

Complaints

S100 treatment advisor: Kristine Nilsson (AGDHA)

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

Proofreading/subediting: Prue Astill Christine Berle Alastair Laurie Adrian Rigg First dog on the moon comic: Andrew Marlton

Do you want to help? 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. Image / Google Images

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 • taking part in our C me community advocacy project • providing content for Hep Review and Transmission Magazine. • proofreading for Hep Review and other Hepatitis NSW 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 (see right).

Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Lisa Camillo, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak

Contact Hep Review by phone: 02 9332 1853 fax: 02 9332 1730 email: pharvey@hep.org.au post: Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in: Level 4, 414 Elizabeth St, Surry Hills, Sydney

Hepatitis Helpline: 1800 803 990 (NSW) Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to 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 magazine

Edition 81

September 2013

HEAR PAUL’S STORY

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