Hep Review ED78 by HepatitisNSW

HEP REVIEW Edition 78

Summer

py Free co e tak e s a e l P

Dec 2012

Denyse, C me community advocate nurturing real change in the South Western Sydney Local Health District and looking for others who want to help The Australian prison needle program story: from Geoffrey Pearce to Alexander Maconochie The Auckland statement on viral hepatitis Major breakthrough for hep C vaccine Chickpea and sweet potato burgers Your mob, my mob, our mob Guinness World record set Dealing with change

Hep Review

Edition 78

December 2012

feature The Australian prison needle program story: from Geoffrey Pearce to Alexander Maconochie With the ACT government currently initiating a trial of controlled prison needle exchange, the question becomes, when will other Australian states and territories do likewise?

n 1997 Geoffrey Pearce, a NSW prison officer, died from an AIDS-related illness. Seven years earlier he had been stabbed by a prisoner with a needle containing HIV-infected blood. It was the only documented case of a deliberate needle attack resulting in transmission of HIV, inside or outside of a prison setting. Then, as now, drugs are not allowed in prisons. Then, as now, drugs are used in prisons.

A different model could see a better focus on protecting people in prisons from blood-borne viruses. Some needle exchange models could also help prevent overdoses and direct people into drug rehabilitation programs, hep C treatment programs and health education services. It is easier to reach people in prisons than in the wider community so this presents good opportunities for health education programs.

People use drugs in prisons for many reasons and in many ways. Drugs and drug injecting equipment get into prisons despite the efforts of prison authorities to keep them out. Because drugs are easier to smuggle into prisons than injecting equipment, needles are kept hidden and shared. When they begin to wear out, they may be repaired and re-used, making them even more unsafe. Needles and syringes are often used many times and by many people, and this sharing of equipment can spread HIV and hep C among the prison population. Cleaning needles with bleach, which is available in prisons in most states and territories in Australia, is not always effective, especially if it is not done thoroughly; prisoners often do this hastily to avoid being caught.

Jenny Heslop knew Geoffrey Pearce from her past work as a convenor of health and infection prevention training courses. Geoffrey attended a course in his role as a prison officer, and spoke at later courses about his experience of becoming infected with HIV. Jenny, now Manager HIV and Related Programs Mid North Coast Local Health District and Northern NSW Local Health District, remembers him as a pragmatic man, who accepted that drug use exists in prisons.

What happens in prisons is not isolated from the rest of society; people leave prison and return to their families, friends and social contacts. The health of people in prisons has an impact on the health, and the health care system, of Australia. Prison authorities spend a lot of time and money trying to stop drugs and equipment from entering prisons, and on searching for drug equipment within prisons. “The fact is, the more money spent on detecting drugs in jail and the more severe the penalties for drugs in jail, the higher the price and the more profitable drug trafficking into jails becomes,” says Alex Wodak, Director of the Alcohol and Drug Service at St Vincent’s Hospital.

www.hep.org.au

“He believed that in prison or not, whether illegal or not, drug use occurs,” says Jenny. “He saw a need to reduce the infection pool for HIV and hep C within prisons. I saw him as an advocate for controlled needle exchange in prison.” Several countries have introduced controlled needle exchange programs in prisons. In some countries health care workers distribute new needles through medical units, some use dispensing machines, and some use a peer exchange model; some are open to all prisoners and others have exclusions. Outcomes show that there is a decrease in needle sharing, an increase in referrals to substance misuse treatment programs, no security or violence issues, and no increase in drug use. Prison officers in these countries reported positive experiences and supported the programs.

feature

Image via http://tychobrown.blogspot.com.au/2011/02/razor-wire.html

The right to health The United Nations’ International Covenant on Economic, Social and Cultural Rights recognises the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, including the prevention, treatment and control of epidemic, endemic, occupational and other diseases. Simply, this means that signatory countries, including Australia, agree that all people have the right to good health, and will be protected from disease. Prisoners have been removed from larger society as punishment for their crimes; this punishment should not include removal from access to the health protection other citizens have. “Australia is a signatory to international conventions that commit to providing health services for prisoners that are equivalent to those available for the broader community,” says Stuart Loveday, CEO of Hepatitis NSW. “Sadly, no Australian government currently allows equivalent health protection services in prisons that protect prisoners and custodial staff from BBV infection.”

Measures to prevent transmission of bloodborne viruses have been effectively introduced in Australia: blood is screened before transfusion; health professionals have safety procedures and protective equipment; and needle exchanges help prevent needle sharing – except in prisons. A person who protected themselves from HIV and hep C by always using a new needle would not be able to do so in prison; this same person, however, would be carefully protected from contracting a blood-borne virus if they needed a blood transfusion while a prisoner. In Victoria, where the Victorian Charter of Human Rights and Responsibilities reinforces the state’s duty of care and obligation, a prisoner is preparing to sue the state government for not protecting him from hep C while in jail. A successful suit would cause all state and territory governments to reconsider their stance on this issue.

Hep Review

Edition 78

December 2012

feature Opposition to needle exchanges in prisons

The Alexander Maconochie Centre

Prison officers’ unions across Australia are against introducing needle exchanges. As part of their Stop the Cell-off campaign, the Public Service Association of NSW, the trade union representing NSW public prison officers, is opposing needle exchanges in prisons.

Named after a 19th century penal reformer, the Alexander Maconochie Centre in the ACT was planned and built to meet Australia’s human rights obligations for prisoners, with inmates living in a setting as close to a community setting as practical. After years of debate and inaction by the ACT government, Katy Gallagher, the Labor Chief Minister of the ACT announced on 15 August that they plan to introduce a needle exchange program in the centre by next year.

The website for the campaign, referring to Geoffrey Pearce, states: “We’ve already had one death of a prison guard from a needle stick injury in NSW after he was stabbed and infected with HIV. This outrageous and absurd program increases the chance of more.” “Introducing a needle exchange program in prisons arms criminals with a weapon that can be used to attack prison guards or other prisoners,” says Matt Bindley, Chairman of the Prison Officers Vocational Branch, Public Service Association NSW. However, in countries where prison needle exchanges have been introduced, there have been no cases of needles being used as weapons against staff or prisoners. The campaign also argues that the government should concentrate on keeping drugs out of prisons rather than administering their use. “We need to work towards making it harder for prisoners to get their hands on drugs, not easier,” is the association’s position. Needle exchange programs in prisons would not make it easier to get drugs, just safer to use them. Presumably, prison authorities would continue with the same measures to prevent drugs from entering prisons. Prison officer unions are also reluctant to have their members seen to be involved in any way with illegal activities, such as the use of drugs; this leads to the debate about operational models and the option of programs being operated by medical professionals within a prison.

To do this, they will need the support of the union which represents prison officers, the Community and Public Sector Union. The union, while previously strongly opposed to needle exchange in the prison, has said it is looking at the proposal and will be open to discussing the issue. The model proposed would be a one-for-one needle exchange, alleviating one of the fears of prison officers that it would lead to a large increase in needles within the prison. The ACT Greens Party supports the program, while the ACT Liberal Party is opposed; it is one of the issues that was taken into the ACT election in October. As the peak community-based hepatitis organisation in NSW, Hepatitis NSW advocates that needle exchange programs in prisons are essential to protecting the health of everyone. “We applaud Katy Gallagher for placing public health and pragmatism before politics,” says Stuart Loveday. “Prison needle exchange is a vital missing link in Australia’s response to hepatitis C and HIV transmission among people who inject drugs. With prison needle exchange, not only will we help protect the health of prisoners, but the occupational health and safety of corrections staff will be enhanced.” Jenny Heslop believes that when Geoffrey Pearce died we lost an advocate for controlled needle exchange in prisons; someone with insight and understanding of prison settings and the will to protect the health of prisoners and prison officers – a bridge between opposing sides in this debate.

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Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com For more information about prison needle exchange and other harm reduction initiatives, contact the Hepatitis Helpline. Also see this edition, pages 9 and 32.

www.hep.org.au

feature

“He believed that whether in prison or not, whether illegal or not, drug use occurs.” “He saw a need to reduce the infection pool for HIV and hep C within prisons. I saw him as an advocate for controlled needle exchange in prison.” Jenny Heslop commenting on prison officer, Geoffrey Pearce.

Image by riekhavoc (caught up?), via Flickr.com (it is not that of Geoffrey Pearce) Unless otherwise stated, people in our images are not connected to hep C.

Hep Review

Edition 78

December 2012

editor’s intro

t’s been a very exciting few months since our last edition. Prison needle exchange is now openly on the table. What was once a dream is now very close to reality. These breakthrough developments remind us to never give up on our goals. We’ve recently attended the 8th Australasian Conference on Viral Hepatitis. These conferences are held every two years and for the first time since 1999, was held in New Zealand. The trip gave us a chance to talk to lots of different health workers across Australia and New Zealand but I was especially interested in catching up with staff from a particular NSP in Christchurch about their quite amazing successes at client education. Additionally, Hepatitis NSW has launched our C Me community advocacy project. Although we introduced the project in our previous edition, it’s been really exciting watching the project take off. Projects can come and go but I’ve got a very good feeling that C me is here to stay and is going to deliver big outcomes for us all. Additionally, we’ve seen Hepatitis NSW move to new premises at 414 Elizabeth St, Surry Hills. The move gives us great potential and having a lift and a properly designed mailing room is making things even more effective (and easier). I haven’t yet mentioned what you’ll find in this edition. As always I hope you find lots of interesting stuff. My favourites include our “Geoffrey Pearce” and “Dealing with change” articles and it’s good to hear back again from Wayne, one of our readers.

keyhole to our work C Me Community Advocacy Project; Hepatitis NSW has received funding to develop a new and exciting peer advocacy project. C me seeks to empower, skill and equip people living with hepatitis C to become community champions. We are recruiting 15 individual volunteers for the project, one in each of the Local Health Districts. We provide training and ongoing support to them. Our community advocates are learning how to represent affected communities, consult and advocate on behalf of them as well as recruit other champions to become involved in campaigning and lobbying. These Expert Community Champions are advocating with local policy makers, MPs, attending meetings and helping us push for change in prevention, treatment and care services for people living with hep C. Alongside this we run a series of community events and a series of annual campaigns based around our organisational advocacy manifesto “Our 20 Asks – what we want to happen in the next four years”. Online Chat Hepatitis NSW recently launched a new online chat service. Our clients can now chat instantly with one of our Helpline workers via www.hep.org.au To use the service, clients click the blue “Live Support” button at the top of the site, answer some

Paul Harvey Editor/Production

Weblink of the month

The Hepatitis SA library webpage has a catalogue that lists over 500 free-to-access online resources from reputable national and international sources. New resources, including documents, online videos and audiocasts, are being added on a weekly basis. Topics include: diagnosis, treatment, nutrition, mental health, drug issues, discrimination, information for different cultures and settings as well as educational, policy and statistical documents. The catalogue, and other information about the library, can be found at www.hepsa.asn.au/library

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

www.hep.org.au

Cover image by Paul Harvey. Unless otherwise stated, people in our images are not connected to hep C.

contents confidential questions for our stats and then they chat away. There’s no need to sign in or download any new software. The online chat service is available between 9am - 5pm weekdays (except Thursdays when it is available from 1-5pm). The service provides information, support and referral to anyone in NSW. It will be evaluated after six months of service. If you’re interested in finding out more about the service, please email Kirsty Fanton kfanton@hep. org.au E&D Prevention Work in Local Health Districts Our Education and Development Team has been busy running workshops around the state, specifically addressing prevention, transmission, stigma and discrimination and inclusion. We have been working with youth workers, healthcare workers, Corrective services staff, General Practitioners, nurses, dentists and dental assistants, needle and syringe program workers, Indigenous young people and those who work with Indigenous populations. So far in 2012, the team has delivered 30 sessions with a total of 340 participants. Our collaboration with the Hunter Rural Division of GPs enables us to provide education sessions across NSW where GPs can receive RACGP CME points. Continued on page 29.

Seeking your stories Personal stories provide balance to our other articles. Please consider telling us your story. Published stories attract a $50 payment. Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.

Reader survey winner We’d like to congratulate Mark who is the lucky winner, chosen at random from the 22 readers who responded to our survey. We’ve sent a letter to you Mark, care of your MIN number.

Australian news 9 World news 12 Features The Australian prison needle program story: from Geoffrey Pearce to Alexander Maconochie 2 The economic impact of hep C in Australia 20 The Auckland Statement on Viral Hepatitis 21 Treating hep C and reducing community prevalence 22 Treat Us Well: C me Community Advocates trained for our first advocacy campaign 23 Dealing with change – the reality slap 26 People too polite to challenge doctors 31 Needle program to go ahead at Canberra jail 32 Hep C problem among Skid Row homeless people is growing 33 Helping prisoners get healthier 36 Your mob, my mob, our mob 38 Hepatitis Awareness Week and WHD 41 Keeping a food journal is the key to shedding kilos 45 Body armour 51 Obituary: Darryl Cotton dies 57 Obituary: Franz West loses hep battle 57 Opinion Time to lift hep C stigma 54 My story David’s story: triple treat? 24 Heather’s story: be the squeaky wheel 30 Wayne’s story: the transplant call 42 Anita’s story: another case of discrimination? 43 Research updates Insect insomnia give insight in restless legs 58 Treat people who use drugs to cut hep C rate 58 Silymarin: herbal remedy for hep C does not work 59 Vitamin B12 supplements may help treat hep C 59 Ongoing impact of hep C 60 Role of trust in needle sharing 60 Body-building supplements hammer the liver 60 EASL 2012 update summary 61 Regular features Harm Reduction poster 34 Hep Chef – Chickpea and sweet potato burgers 44 Hello Hepatitis Helpline 46 Reader survey 47 Factsheet – Illness outcome 51 Hepatitis NSW service promotions 52 Interferon-based treatment 62 Complementary medicine 63 Support and information services 64 Back cover – hep C treatment awareness 68

Hep Review

Edition 78

December 2012

promotions

letters

ONLINE

ACT congratulations

chat Hepatitis NSW has launched a brand new online chat service! 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 ACT Government has announced a comprehensive evidence-based strategy to manage blood borne virus (BBV) risk and transmission in the Alexander Maconochie Centre (AMC). This provides an important opportunity to act on the existing evidence and better manage the risk and spread of BBVs such as hep C within the prison population and beyond. The ACT prison population has alarmingly high rates of hep C infection. Given the AMC population’s high prevalence and multiple risk factors for BBVs, advocates for better prison and community health will be pleased with a strategy that is comprehensive in addressing the full range of transmission risks. Detainees will soon be able to exchange used syringes. Replacing existing equipment that has been shared by many people with sterile equipment is a victory for public health, common sense and evidence based policy. All state and territory governments supported the provision of prison-based needle and syringe programs in custodial settings when they endorsed the recommendations of the 2010-2013 National Blood Borne Viruses and Sexually Transmissible Infections Strategies. The ACT Government is the first to take steps towards implementation. ACT Chief Minister Katy Gallagher should be congratulated, along with the many organisations and individuals who have worked determinedly to improve prison and community health by maintaining the push for better BBV management in prison. •

John Didlick, Executive Officer, ACT Hepatitis Resource Centre.

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

www.hep.org.au

Image courtesy of Google Images

St Vincent’s viral hepatitis clinic

Image courtesy of Google Images

Tassie prisons needle exchange? Tasmania – A needle exchange program may be introduced in Tasmanian prisons if the ACT’s trial program proves successful. Corrections Minister and Tasmanian Greens leader Nick McKim said although the government was not proposing a needle exchange program in Tassie prisons, it had interest in the outcomes of the ACT Labor-Green government’s move to do so. The ACT government announced it would trial a needle exchange program in Canberra’s prison from January 2013 in an effort to reduce bloodborne viruses such as hep C. Greens deputy leader Tim Morris last year said the party wanted debate on whether clean needles should be provided to drug-using inmates for harm minimisation and to provide a safe working environment for prison staff. The Australian National Council on Drugs has released a report on the use and treatment of drugs in Australian prisons. It revealed that general searches in Tasmania prisons over 2009 had uncovered 30 syringes. The report said in that year, 50% of Tasmania’s positive notifications came from prisons. •

By Matt Maloney. Abridged from Sunday Examiner, 2 Sept 2012 ANCD report: http://tinyurl.com/9jjwn4v Regards this article and right article, also see page 2 and 32.

news Needle exchange for ACT jail Australian Capital Territory – The ACT Government will trial a needle exchange program; part of a new strategy to tackle blood-borne viruses at the Alexander Maconochie Centre. Chief Minister Katy Gallagher says prisoners will be given access to needles under a “one-for-one” model. Clean injecting equipment is only provided if dirty injecting equipment is handed in. “In that case, there wouldn’t be any more (needles) than there are at the moment,” she said. The Moore Report recommended a universal exchange program, but Ms Gallagher says the “one-for-one” model was decided on after consulting with AMC staff and unions. “It is essentially a medical model. It would be a matter between the detainee and the doctor about whether or not access to sterile injecting equipment is in their clinical interests as part of treatment,” she said. The ACT will be the first jurisdiction in Australia to have a needle exchange in a prison setting. Ms Gallagher says an implementation group including AMC health and corrections staff will be set up to work out the details for the trial. She says she hopes it will be in place next year. The management strategy also includes educating prisoners about the spread of blood-borne viruses, steps to cut off the supply of drugs in the prison, and more treatment and screening. “About 50% of prisoners are positive to hepatitis C. It’s extraordinarily high. We have evidence of drug use, we have evidence of injecting equipment in the jail,” Ms Gallagher said. “The evidence is clear. It’s not going to go away. It’s also clear that if we were able, in a controlled way, to provide people with the right support and education, that we can minimise blood-borne virus transmission.” The ACT Government has also released its response to the Moore Report and an update on the Burnet Report. •

Abridged from abc.net.au (15 Aug 2012) http://tinyurl.com/9tgc9r3 Moore report: http://tinyurl.com/8zmku8r Burnet report: http://tinyurl.com/9c8vvll

Hep Review

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December 2012

news Major breakthrough Gold Coast liver cancer trials for hep C vaccine Victoria – Researchers at the Burnet Institute have solved a mystery which, once developed, could lead to the first preventative vaccine for hep C. Currently undergoing formal pre-clinical studies, the vaccine is the result of breakthrough work done by Associate Professor Heidi Drummer with her team from the Institute’s Centre for Virology. Drummer and her team have overcome a major hurdle in HCV vaccine research, developing a vaccine candidate that protects against a number of different hep C strains. “Hep C has a great ability to change its structure and evade the immune response. This makes vaccine development challenging,” Drummer said. “Our vaccine is unique as it contains only the most essential, conserved parts of the major viral surface protein, eliciting antibodies that prevent both closely and distantly related hep C viruses from entering cells, thereby preventing infection.”

Queensland – The Gold Coast Hospital is appealing for people with liver cancer to take part in a worldwide trial which will investigate treatments to help patients live longer. It is one of 72 facilities around the world taking part in the study to discover the best treatment. The study will investigate if internal radiation combined with chemotherapy is better than chemotherapy alone in patients where the liver tumours have spread from an initial diagnosis of bowel cancer. Gold Coast Hospital oncologist Dr Marco Matos said determining the best treatment could extend patients’ lives. “Patients with liver cancer face sobering statistics and urgently need better treatments,” Dr Matos said. “Liver cancer is usually an incurable condition.

Associate Professor Drummer was speaking at the prestigious Immunotherapeutics and Vaccine Summit in Cambridge, Massachusetts on 13 August, 2012.

“We hope this study will provide definitive evidence of the best first-line treatment to control patients’ liver tumours and prolong patients’ lives by months or years without compromising their quality of life.”

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Abridged from medicalxpress.com (15 Aug 2012) http://tinyurl.com/9o4ue4k

Abridged from goldcoast.com.au (2 July 2012) http://tinyurl.com/9my9lbw

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

Class action over hep C scandal Victoria – The fifty women who contracted hep C at a Melbourne clinic have recently launched a class action in the Victorian Supreme Court. The action is against three parties: the Australian Health Practitioner Regulation Agency, the director of the now-defunct Croydon Day Surgery and anaesthetist Dr James Latham Peters. The women attended the Croydon Day Surgery between January 2008 and December 2009, and all contracted hep C virus or are carrying HCV antibodies after Dr Peters, who has an ongoing hep C infection, anaesthetised them. The law suit, filed by Slater and Gordon, is believed to be the first time a personal injury class action has been lodged against a medical practitioner regulator in Australia. Slater and Gordon practice group leader Julie Clayton, said the affected women had “put their faith in the medical profession and they feel betrayed at a time when they were most vulnerable.” Peters, 61, is also facing dozens of criminal charges, with prosecutors alleging he used needles to inject himself before using them on his patients. •

Abridged from au.news.yahoo (16 May 2012) http://tinyurl.com/8tp4322

news Bear facts boost hep B education New South Wales – Two hep B resources, featuring a cartoon character called Hepatitis B Bear, have been launched in a bid to improve low treatment and monitoring rates. An estimated 170,000 people live with chronic hep B in Australia almost half of whom come from endemic countries of the Asia Pacific region but only 2% receive treatment, experts say. A DVD for patients and a flipchart featuring Hepatitis B Bear for health professionals to use during consultations are designed to better explain the phases of the disease to adults. Dr Miriam Levy, the head of gastroenterology and hepatology at Liverpool Hospital in Sydney, said the disease was particularly complex for patients and often health professionals to understand. The aim over the next five years would be for 30% of people with chronic hep B to be receiving treatment, with the other 70% being monitored, she said. The DVD will be available at www.swslhd.nsw.gov. au and GPs can request the flipchart from Louise Smith at Sydney South West Area Health Service: Louise.Smith@sswahs.nsw.gov.au •

Abridged from Medical Observer (3 Aug 2012) NB: The resources have been endorsed by eight organisations including South Western Sydney Local Health District, the Australian Liver Association, Hepatitis NSW and the NSW Cancer Council.

Do you live in the 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

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December 2012

news

Image courtesy of Google Images

Doctors want big boost for hepatitis New Zealand – Doctors at the 8th Australasian Conference on Viral Hepatitis called on politicians, ministers and health officials to commit to more efforts to prevent viral hepatitis. Liver cancer is one of the two fastest-increasing cancer deaths in Australasia, and doctors say that is largely due to the increase in hepatitis. It’s thought that more than 500,000 people in New Zealand and Australia have chronic hepatitis B or C.

Guinness World record set

“This is one of the few cancers where the average survival rate is less than one year after diagnosis,” said Dr Edward Gane, deputy director of the New Zealand Liver Transplant Unit.

USA – The World Hepatitis Alliance and the participating groups around the world succeeded in setting a new Guinness World Record with 12,588 people taking part. The record took place to mark World Hepatitis Day. On 28th July, across the globe people gathered to mime the “See No Evil, Hear No Evil, Speak No Evil” actions – a theme which record breakers hoped would highlight that around the world, hepatitis is being ignored. We are very grateful to all the participants for helping us to achieve this fantastic result! •

Abridged from asianweek.com (10 Sept 2012) http://tinyurl.com/8qgkfuz

Dr Benjamin Cowie, a physician with the Victorian Infectious Diseases Service said he would like more resources to be used in the fight against hepatitis. One of the major concerns was that there was a significant number of people who had no idea they had the disease, Cowie said. “There’s a lack of community knowledge of viral hepatitis, the fact that it’s associated with liver cancer and the fact that treatments are available,” he said. “Instead of intervening at a time when it’s cost effective to do so, we’re left with trying to do liver transplants and emergency responses where we could be acting to prevent it in the first instance.” •

Abridged from tvnz.co.nz (10 Sept 2012) http://tinyurl.com/c294433

Brand new resource:

Two Hep C Questions: What will happen to me? Should I go on treatment?

This innovative new booklet aims to help you make good decisions about your health and provides a guide to long term hep C health outcome. It is intended for use by you and your GP, liver specialist or nurse. For free supplies across NSW, please use our faxback resources order form... http://tinyurl.com/7kctp25 or call the Hepatitis Helpline 1800 803 990

www.hep.org.au

WHO issues guidance on NSP Geneva – In its Guidance on Prevention of Hepatitis B and C Among People Who Inject Drugs, the World Health Organization recommends four actions for countries to take: •

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offer people who inject drugs the rapid HBV vaccination, which takes three weeks to administer instead of six months offer people who inject drugs incentives to increase uptake and encourage completion of the HBV vaccination schedule implement needle and syringe programs to provide low-dead-space syringes that retain less blood after use offer peer interventions to people who inject drugs in an effort to reduce incidence of viral hepatitis.

The guidance also stipulates that psychosocial or behavioural interventions are not suggested for people who inject drugs because no evidence indicates that such measures are effective at reducing hepatitis rates. “Countries that have adopted a public health approach to injecting drug use and HIV have been the most successful in turning round their HIV epidemics. We need to do the same for hepatitis,” said Dr Ying-Ru Lo, from the WHO’s HIV Department, said in a news release. •

news UAE donates 6.2 million syringes United Arab Emirates – The UAE has shipped 6.2 million syringes to Nepal and Tanzania in an effort to curb the spread of injection-related illnesses. Dr Amin Al Amiri of the Ministry of Health cited statistics from the World Health Organization, which indicate unsafe injection practices lead to 21 million hep B cases, 2 million hep C cases and around 260,000 new HIV cases worldwide every year. He added that nearly 16 billion syringes are used annually across the developing world and 70% of those syringes are reused, leading to the spread of illnesses such hepatitis and HIV. The UAE syringes were shipped out this year. Donations of over A$261,000 from an array of UAE companies contributed to the effort. All the syringes are auto disabled for repeated use, using a technology inhibiting their reuse, Al Amiri said. “The purpose of the initiative is to purchase autodisabled syringes to support developing countries … to eliminate the dissemination of infectious diseases,” he said. Both Tanzania and Nepal were selected by the WHO to be the recipients of the syringes, Al Amiri noted. •

Abridged from khaleejtimes.com (4 June 2012) http://tinyurl.com/9mz3g4y

Abridged from medscape.com (25 July 2012) http://tinyurl.com/9y3brqs There are some controversial suggestions in this guidance. We look forward to debate on this, and to your comments.

We publish many more hep-related news items on www.hep.org.au For daily updates, follow us on Twitter or an RSS feed. Twitter – it’s as easy as “one two three!” 1) Open a Twitter account. 2) In Twitter, click on “find people” and search for “hepatitisNSW”. 3) Click on the “follow” button. 4) You’ll get a sentence and a link to each news item as they are put up daily on our website. On our site, you’ll get the link to the original news source. RSS – find out more: A bookmark on your browser toolbar will showcase links to our latest news items. http://www.hep.org.au/documents/UsingOurSocialMediaTools.pdf

Hep Review

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December 2012

news Hep B brought down Bin Laden Pakistan – The Pakistani doctor who allegedly used a fake hep B vaccination campaign to obtain DNA samples of Osama Bin Laden’s family in Abbottabad a year ago may have become an unsuspecting pawn in the intelligence war between the United States and Pakistan. Dr Shakil Afridi was arrested by Pakistani intelligence agents 20 days after a secret US raid killed Bin Laden. He was sentenced to jail for 33 years on charges of treason. His family disappeared from his home in Peshawar’s Hayatabad neighbourhood within a week of his arrest and have not been accessible to the media since then. The compound where Osama Bin Laden was hiding is on the outskirts of Abbottabad, a hill town, 35 miles north of Islamabad, at the end of what was then a relatively isolated dirt road. Officials believe the DNA samples Dr Afridi obtained brought the Americans to Bin Laden’s home His colleagues in the health department at Khyber, where he served as the area surgeon, are tightlipped about his activities or any thoughts he might have shared with them.

Hep C brings Punjab govt to its knees Pakistan – The growing number of hep C patients has brought the Punjab government to its knees and it does not have enough funds to provide free treatment to a large number of patients at public hospitals, Daily Times has learnt. According to details, the Punjab Health Department can provide health facilities to only a limited number of patients – around 21,000 patients per year across the province. According to a study conducted by the Pakistan Medical and Research Council, in Lahore alone there are 488,000 hep C patients waiting for treatment. Around six million patients have the liver disease across the province. “The Punjab Health Department, under the hepatitis-control programme, has provided treatment to 84,000 patients in the last four years. It cost A$20,271,000 to the provincial kitty,” an official working for the programme said.

And he never underwent a regular trial where he could have told his side of the story.

About the fate of other patients, he said, “They run from pillar to post at public hospitals with applications in their hands, but they do not get free treatment. A limited stock of injections and medicine are supplied to hospitals.”

•

Abridged from bbc.co.uk (24June2012) http:// tinyurl.com/bqjlsev

Abridged from dailytimes.com.pk (9 June 2012) http://tinyurl.com/9ztllat

Royal Prince Alfred Hospital liver clinic

Image, source unknown.

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.

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 Bristol-Myers puts Obama’s World Hep hold on hep C study Day proclamation USA – Bristol-Myers Squibb is suspending a midstage study of a potential hep C treatment after at least one patient suffered heart failure. “We are working in close collaboration with clinical trial investigators and health authorities to ensure the appropriate steps are being taken to protect patient safety,” spokeswoman Sonia Choi said. Shares of Bristol-Myers plunged almost 8%. The drugmaker is an important maker of medicines for viruses, including Baraclude for hep B and several HIV drugs. Bristol-Myers is pushing to become a player in the hep C drug market, which is expected to grow as baby boomers get older. The drug, labelled BMS-986094, is one of two main potential hep C treatments from BristolMyers that investors are focused on. The other is a compound labeled daclatasvir that has started late-stage testing, the last step before drugmakers submit a product to regulators for approval. •

Abridged from washingtonpost.com (2 Aug 2012) http://tinyurl.com/9zarxfq

HALC

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

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

Superannuation, insurance and employment Privacy and healthcare complaints Immigration, discrimination and vilification Enduring Power of Attorney and Enduring Guardianship.

We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.

USA – Worldwide, one in twelve people is living with viral hepatitis. As a leading cause of liver cancer in the United States, viral hepatitis remains a major public health challenge. The disease can persist for decades without symptoms and many people are unaware of their infection status. On World Hepatitis Day, we call attention to this silent epidemic, and we re-dedicate ourselves to the fight against viral hepatitis. Hepatitis prevention and control begins with awareness. Tragically, complications resulting from viral hepatitis claim thousands of American lives every year. The burden is borne disproportionately by African American, Hispanic, and Asian American and Pacific Islander communities, and by persons born between 1945 and 1965. Heps A and B can be prevented with vaccines, which are recommended for all children and for adults who are at high risk. While no vaccine exists for hep C, early detection and treatment can curb transmission, limit the disease’s progression, and prevent life-threatening complications, including liver cancer. I encourage everyone to learn more about what they can do to stay healthy. On World Hepatitis Day, let us raise awareness of the global health threat of viral hepatitis, renew our support for those living with the disease, and recommit to a future free of this tragic illness. I, Barack Obama, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim July 28, 2012, as World Hepatitis Day. I encourage citizens, Government agencies, nonprofit organizations, and communities to join in activities that will increase awareness about hepatitis and what we can do to prevent it. •

Abridged heavily from whitehouse.gov (29 July 2012) http://tinyurl.com/c95zlgw Although previously, a promoter of harm reduction, Barack Obama makes no mention of NSP in his proclamation. It’s good though to see WHO support for NSP (page 13). Also see ED65, p32 and ED66, p27.

Hep Review

Edition 78

December 2012

news Possible liver cancer cure

Curcumin may curb diabetes risk

USA – Liver cancer is the third leading cancer killer worldwide. Now, researchers are working to crack the code to see what is causing it.

Thailand – Supplements containing a compound found in curry spice may help prevent diabetes in people at high risk, according to a Thai study.

Studies show that loss of a small RNA molecule in liver cells might cause liver cancer and that restoring the molecule might slow tumour growth and offer a new way to treat the disease.

Researchers, whose results were published in the journal Diabetes Care, found that over nine months, a daily dose of curcumin seemed to prevent new cases of diabetes among people with so-called pre-diabetes – abnormally high blood sugar levels that may progress to full-blown type 2 diabetes.

Scientists examined what happens when liver cells lack a molecule called microRNA-122 (miR-122). They found that when the molecule is missing, the liver develops fat deposits, inflammation and tumours that resemble hepatocellular carcinoma, the most common form of liver cancer. When the researchers artificially restored miR-122 to nearly normal levels by delivering the miR-122 gene into liver cells, it dramatically reduced the size and number of tumours, with tumours making up 8% on average of liver surface area in treated animals versus 40% in control animals. “Our studies show that the reason that humans are developing liver cancer is because mir-122 is down. We have to maintain mir-122 at some optimal level to have a healthy liver,” said Dr Kalpana Ghoshal, member of the OSUCCC – James Experimental Therapeutics Program. “It is hard to believe that such a tiny molecule could have such a profound effect on the liver biology. It was very fascinating,” Dr Goshal concluded. •

“Because of its benefits and safety, we proposed that curcumin extract may be used for an intervention therapy for the pre-diabetes population,” writes study leader Somlak Chuengsamarn of Srinakharinwirot University in Nakomnayok, Thailand. A diabetes expert not involved in the study says it’s still too early for people to head to the health food store for curcumin supplements. “This looks promising, but there are still a lot of questions,” says Constance Brown-Riggs, a certified diabetes educator and spokesperson for the Academy of Nutrition and Dietetics. “If I was talking to a patient about this, I’d say concentrate on eating healthy and overall lifestyle,” she says. •

Abridged from abc.net.au (30 July 2012) http:// tinyurl.com/8beqvd2

Abridged from ivanhoe.com (24 July 2012) http://tinyurl.com/cxzoqc5

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

UK prisons hep C services survey

US hep C referral maps

UK – The first dedicated survey of hep C services in prisons in England shows that diagnosis and treatment for chronic hep C infection is available to prisoners in most prisons in England, but that care models available vary between in-reach service and out-reach based services.

USA – HealthPro Solutions has announced the launch of Interactive Referral Resource Maps, a novel resource helping people and healthcare providers locate important hep C services.

The merits of each individual model deserve more in depth exploration and the information acquired through the survey will provide pointers towards areas that need further discussion. The aim of the National Survey of Hepatitis C Services in Prisons in England was to collect basic information on what type of services are provided in prisons for the diagnosis, treatment and followup of prisoners infected by hep C. There are some positive indications emerging from the survey, the most important one being that hep C diagnostic services are now being offered in all prisons except one. A previous generic survey carried out in 2007 showed only two thirds of prisons testing. The results of this survey detail useful information for policy makers, commissioners and service providers on models of good practice for provision of diagnosis, treatment and care of people living with hep C infection in prisons in England. •

Abridged from dh.gov.uk (23 July 2012) http:// tinyurl.com/cl9p6k4 National report: http://tinyurl.com/cztc82w Unfortunately the above study did not investigate hep C prevention needs or services.

“People affected by hep C, along with frontline workers, public health and medical providers needed easier access to comprehensive referral information,” said Andi Thomas, HealthPro’s founder and developer of the new tool. By clicking on one of the state flags on the main map page, users see the map for their home state in a familiar and fully featured Google Maps display. All of the resource icons appear on the map initially but can then be filtered by resource type: health clinic, physician, support group, drug treatment or viral hepatitis coordinator. Each map allows users to zoom in to find the closest resource location for their needs. When a user clicks on a map icon, a pop up box displays the name of the establishment, the address, county, phone, and notes including scope of services. HealthPro Solutions is a nonprofit with a mission to assist people, and organizations that serve them. It is a successor organization to Hep-C ALERT. •

Abridged from pr.com (26 June 2012) http://tinyurl.com/8s37a89 Visit www.healthpro-solutions.org/maps

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 Janine Sawyer at the Children’s Hospital Westmead (CHW), Sydney, on 98453989 or janines1@chw.edu.au

Image via Google Images

Hep Review

Edition 78

December 2012

news Irish hep C payouts Cuba eradicates reach A$1.2bn hep B in children Ireland – The state-funded tribunal compensating people infected with hep C or HIV through contaminated blood or blood products has now paid out over A$1.2 billion, new figures reveal.

Cuba has eradicated acute viral hep B in children younger than 15, thanks to immunisation campaigns featuring vaccines that provide lifetime protection, state media reported.

The funds were paid out by the tribunal to 3,219 claimants between 1996 and the end of 2011 and it includes compensation, legal fees and administrative costs.

No cases of the disease have been reported on the island in the past 23 years in the paediatric age group, with the incidence of the disease reduced by 99% from 2,194 cases in 1989 to 21 in 2011, all of them involving people older than 30, the official Granma newspaper reported, citing medical specialists.

The tribunal will have to sit for many years to come and currently around 800 claims are awaiting a hearing. Between 1977 and 1994, at least 1,000 women were infected with hep C from contaminated anti-D, which was produced by the then Blood Transfusion Service Board to prevent them having “blue babies”. It also emerged that around 100 of the women were blood donors, recycling hep C through the blood supply until screening was introduced in 1991. Approximately 1,700 people were infected with hep C. Most of the men with haemophilia who contracted hep C also contracted HIV.

Cuba has administered the Heberbiovac HB vaccine since 1992. It is produced by the Center for Genetic Engineering and Biotechnology. The vaccination campaign was later expanded to students and members of at-risk groups, such as health professionals and dialysis patients, among others, Granma newspaper said. Everyone in Cuba below the age of 31 has been vaccinated against the disease, Granma said. •

Abridged from latino.foxnews.com (25 June 2012) http://tinyurl.com/6rao9sm

The State is also providing home support services for people whose health is badly affected and also an insurance scheme whereby those who have a loading on their premium or are deemed uninsurable due to their infection can acquire insurance at market rates. •

Abridged from independent.ie (18 June 2012) http://tinyurl.com/9lwsx5a

Healthy Liver Clinic every Tuesday 10am - 12pm @ KRC ‡ ‡ ‡ ‡ ‡ 18

Information about hepatitis C transmission and prevention Hepatitis C testing and monitoring Fibroscan referral Specialist treatment Doctor, nurse and counsellor available www.hep.org.au

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!

news An app a day USA – Before long, your doctor may be telling you to download two apps and call her in the morning. Smartphone apps already fill the roles of television remotes, bike speedometers and flashlights. Soon they may also act as medical devices, helping patients monitor their heart rate or manage their diabetes, and be paid for by insurance. The idea of medically prescribed apps excites some people in the health care industry, who see them as a starting point for even more sophisticated applications that might otherwise never be built. But first, a range of issues around vetting, paying for and monitoring the proper use of such apps needs to be worked out. “It is intuitive to people, the idea of a prescription,” said Lee Perlman, managing director of Happtique, a subsidiary of the business arm of the Greater New York Hospital Association. Happtique is creating a system to allow doctors to prescribe apps, and Mr Perlman suggested that a change in the way people think about medicine might be required. “We’re basically saying that pills can also be information, that pills can also be connectivity.” Simple apps that track users’ personal fitness goals have already gained wide traction. Now medical professionals and entrepreneurs want to use similar approaches to dealing with chronic ailments like diabetes or heart disease. •

Abridged from nytimes.com (19 Aug 2012) http://tinyurl.com/9p425gc Also see page 17.

feature Q&A: What is the risk

of hep C transmission with spitting and bashing? There’s been lots of media coverage of a prison officer who bashed a prisoner, allegedly with hep C, who spat on him in a Newcastle prison cell. “While not condoning the action of the prisoner or the prison officer, it is necessary to give accurate information on how hep C is transmitted,” said Stuart Loveday, CEO of Hepatitis NSW. “Hep C is transmitted by blood-to-blood contact. The blood of a person with hep C needs to get into the bloodstream of another person for transmission to occur,” he said. “With spitting, blood would have to be present in the saliva and then enter another person via an open wound. While this may be possible by spitting, the chances of this occurring are extremely low.” “Certainly, hep C transmission would not have occurred in this spitting event shown on national television,” he said. “Regrettably, by repeatedly punching the prisoner and grazing himself, the prison officer has, in fact, put himself at higher risk of contracting hep C, if by chance his fist were split open in the bashing and blood-to-blood contact happened as a result.” For more info, call the Hepatitis Helpline on 1300 437 222 (local call costs from landlines)

Hep Review

Edition 78

December 2012

feature

The economic impact of hep C in Australia A new report opens the lid on our hepatitis C epidemic and shows why it is an issue for all Australians.

hree hundred thousand Australians have been exposed to hepatitis C virus and a new report investigates just what sort of impact this epidemic will have on our nation. Commissioned by pharmaceutical company, Janssen, and researched and written by independent research company, Boston Consulting Group, the report goes into great detail about how much tax payers money will be lost to hep C. The figures shock and should put hep C in the minds of all Australians, not just those directly affected. Many of the 300,000 individuals affected will develop serious liver damage – cirrhosis. A smaller number of people will experience liver failure or liver cancer and will most likely find themselves on a liver transplant waiting list. This is where the big costs lie: an estimated cost to our national and state budgets of $252 million per year. Health economists at Boston Consulting Group looked at the current and estimated numbers of people living with hep C. They applied the estimated long term outcomes and added up the associated health care costs. They also looked at QALYs (Quality Adjusted Life Years, a measure of disease burden that includes both the quality and the quantity of life lived or lost). Following the 300,000 people over their remaining lifetimes, 600,605 QALYs will be lost, measured against a healthy comparison group, and on the basis of today’s treatment standard, poor health and social costs will impose a $13.4 billion cost on the Commonwealth and State/Territory governments. The report explains the positive benefits of funding triple combination therapy under Medicare and opening up access to those most suitable for treatment. Funding Medicare access to protease inhibitors (triple combination therapy) would avoid 2438 cases of liver cancer and 2237 premature deaths.

www.hep.org.au

Treatment funding would cost $186 million over the lifetime of those people currently living with hep, the report says. But this investment would reap a 400% return. (Drawn from the report) Treatment funding would cost $186 million over the lifetime of those people currently living with hep, the report says. But this investment would reap a 400% return. For every dollar spent to treat hep C, four more would be spent to deal with the consequence of not treating hep C, the report notes. Introducing the report, Helen Tyrell, CEO of Hepatitis Australia, recommends you read the report. “It clearly explains how investment in new hepatitis C treatments will cure more people of a chronic and costly condition,” she says. Commenting on Newswire, Ms Tyrell says the report comes at a critical time: as the Federal government considers the Pharmaceutical Benefits Advisory Committee’s recommendation to list boceprevir and telaprevir as governmentsubsidised treatments. “We can turn the tide on hepatitis C if we focus more on prevention and treatment. The progress in treatment means more people living with hepatitis C can be cured and we must therefore ensure we reap the maximum benefits that this rich opportunity offers,” she said. You can download a copy of the report from http://bit.ly/TOMdGK Also see http://tinyurl.com/cknz9ep Please sign our online petition to help get triple treatment funded under Medicare? Simply go to http://tinyurl.com/c9un375 •

Paul Harvey, Hepatitis NSW

The Auckland Statement on Viral Hepatitis

The 8th Australasian Viral Hepatitis Conference calls for urgent action to prevent new infections and stop the rising death toll

September 2012

Viral hepatitis is an urgent health concern needing immediate action to prevent new infections and to prevent the rising burden of cirrhosis and liver cancer - and avoidable deaths. In Australia and New Zealand alone, there are half a million stories of people living with hepatitis B and hepatitis C. Every single day 50 more New Zealanders and Australians are diagnosed with chronic viral hepatitis and more and more people are dying from cirrhosis and liver cancer each year. We have the capacity, knowledge and tools to tackle viral hepatitis head-on. We know what needs to be done. It is time for action and that is why we are calling on parliamentarians, responsible Ministers, health departments, and others to act now to prevent new infections and prevent avoidable deaths.

Our targets by 2016, are to: • • • • •

halve the incidence of new hepatitis C infections by doubling the amount of new injecting equipment distributed in the general community and implementing NSPs in prisons apply consistent approaches to funding hepatitis B vaccinations for all those at greatest risk ensure at least 80% of all people living with hepatitis B or hepatitis C are diagnosed guarantee that 5% of people living with hepatitis C receive antiviral treatment each year guarantee that 10% of people living with hepatitis B receive antiviral treatment.

A substantial scaling up of resources and efforts is needed to stop these epidemics in their tracks – otherwise liver cancer will continue to be one of the fastest increasing causes of cancer death in Australia and New Zealand. Achieving our targets will require resolute leadership, respect for human rights, a focus on those at greatest risk and in greatest need, supportive legal frameworks and a society which tolerates diversity and does not discriminate against those at risk of, or living with viral hepatitis. Those most affected by viral hepatitis often experience significant barriers to accessing health care, these include: people who inject/have injected drugs, people born overseas in countries with widespread viral hepatitis infection, and Maori and Aboriginal and Torres Strait Islander peoples. While these are groups most at risk of, or most affected by viral hepatitis, achieving the prevention and treatment targets in this Statement is a human rights obligation for all Australians and New Zealanders.

To achieve our targets we must:

Ensure a policy and legal environment that is focused on ending the stigma and discrimination routinely experienced by those at greatest risk of, and living with, viral hepatitis. Laws and practices that criminalise or treat people without basic dignity or human rights, have no place in an effective response to viral hepatitis.

Acknowledge the size of the epidemics and commit to the level of strategic and long-term investment required to curb new infections, increase timely access to quality treatment and care for all in need and end the rising death toll.

Foster strong vision, commitment and leadership on viral hepatitis at all levels that is maintained over the long-term and strategically focused on the areas of highest need.

Commit fundamentally to the principles of genuine partnership which first and foremost requires meaningful engagement with the people at greatest risk of, and living with, viral hepatitis to ensure an effective response. A commitment to partnership between the affected communities, governments, health and social services and researchers must underpin the agenda for action and change on viral hepatitis.

Ensure full and free access to evidence-based and effective viral hepatitis prevention by maximising the effectiveness of NSPs/NEPs, removing barriers to peer distribution of injecting equipment, providing access to new injecting equipment in prisons and adequately funding peer education among people who inject drugs. Access to funded hepatitis B vaccination for those at greatest risk of infection must be improved through inclusion in nationally consistent immunisation schemes.

Improve early diagnosis and timely access to quality treatment, care and support for all in need by reducing the number of people with viral hepatitis who remain undiagnosed or unaware of how treatment can improve and extend their lives. To create an effective, ethical and humane response to viral hepatitis we must enhance access to diagnosis, treatment and care delivered in the most appropriate settings.

Speed up action to improve community understanding of viral hepatitis by ensuring information on how to avoid infection is freely available, facilitating open discussion, engendering more supportive community attitudes, reducing stigma and discrimination and increasing support for evidence-based public health policies.

Drive progress towards our targets as action and change in many areas is required and a failure to act in any one area will hold back overall progress.

There are many challenges ahead, but the time to act is now. A failure to act now would see a steadily increasing number of people infected and a rising number of deaths from liver failure and cancer. The 8th Australasian Viral Hepatitis Conference calls on parliamentarians, governments, health professionals and all members of the community to accept the challenge to create an effective and humane response to viral hepatitis in full partnership with the affected communities. Sign on now and be part of our agenda to change the face of viral hepatitis. Stop new infections. Stop the rising death toll.

THE TIME TO ACT IS NOW Hep Review Edition 78 December 2012 Sign on now at www.aucklandstatement.com

feature Treating hep C and reducing community prevalence Many people who inject drugs are unaware of what hep C treatments are available – or even that they can access these treatments.

espite not being evidence-based, throughout the 1990s people who injected drugs were restricted from accessing antiviral treatment for hep C. Despite the removal of these restrictions, few people who inject drugs are currently treated for hep C.

The model predicted that assuming new therapies become available in five years and they are 80% successful in clearing hep C infection then the impact on hep C prevalence is increased by 21-23% at 15 years and 17-38% at 30 years depending on treatment rates.

One explanation for the continuing low number of people who inject drugs being treated is concern amongst health professionals about treatment outcomes – specifically, treatment compliance and risk of reinfection in those successfully treated.

Interventions aimed at increasing access for people who inject drugs to hep C treatment in community clinics will not only benefit individuals who inject drugs, but also impact on hep C prevalence overall.

A recent review of hep C treatment for people who inject drugs found that they can successfully complete treatment. Variation in treatment outcomes between groups with and without injecting histories is small.

To do this successfully funding is required to: • Support the location of trained hepatitis nurses in primary care services commonly attended by people who inject drugs; • Fund other support services, including mental health, drug and alcohol, social welfare, housing and peer support. • Increase the number of primary care clinicians (GPs) who are able to prescribe hep C treatment or who are willing to provide shared care for a patient with hep C infection who is starting therapy.

Several other recent studies have also demonstrated that people who inject drugs can be successfully treated for hep C. This research showed that treatment compliance is high and the risk of reinfection is low. Treating hep C benefits the individuals receiving treatment by reducing their risk of developing chronic liver disease, cirrhosis and hepatocellular carcinoma, and improving quality of life. Treating people who inject drugs may also have a broader public health benefit. Recent mathematical modelling suggests treating sufficient current injectors could reduce disease transmission and lower the overall prevalence of HCV among people who inject drugs and in the general community. If annual treatment rates were 13, 17, or 25 per 1000 people who inject drugs, the model predicted that the prevalence of hep C would reduce by 20%, 30%, and 50% respectively within 30 years when based on current treatment of pegylated interferon and ribavirin. Treatment success with pegylated interferon and ribavirin varies depending on whether a person has genotype 1 (45%) or genotype 3 (70%). New therapies for hep C are likely to become available over the next five to ten years that are more effective and have reduced side effects.

www.hep.org.au

There is evidence that GP knowledge about hep C diagnosis and management in the primary care setting in Australia is poor. Therefore there is a need to: • Increase GP knowledge and training on hep C so that the capacity of primary care clinics to appropriately manage people who inject drugs is increased. • Develop models of care that support GPs to become involved in hep C through shared care with tertiary/quaternary hospitals. Many people who inject drugs are unaware of what hep C treatments are available or that they can access these treatments. Therefore there is a need to increase the level of knowledge of people who inject drugs about hep C treatment and what is involved in the management of hep C more broadly. •

Professor Margaret Hellard. Head of the Centre for Population Health: Burnet Institute Melbourne and Centre for Research Excellence into Injecting Drug Use Chief Investigator.

feature Treat Us Well: C me Community Advocates trained for our first advocacy campaign

he C me project is off to a flying start with work already underway on the first advocacy campaign, “Treat Us Well”. The Community Advocates chose this campaign name to emphasise the point that new treatments are desperately needed for people with hep C. We need treatment that will increase the chance of clearing the virus for the difficult to treat genotype 1, enabling people living with hep C to get well, stay well and live well.

Treat Us Well Federal Cabinet is yet to approve funding for the new triple therapy drugs. Until this happens the treatments are unavailable to the large number of genotype 1 patients awaiting treatment. We need the support of all Federal MPs to ensure funding is approved.

Health Consultant, Andrew Little, gave some very necessary guidance on making the most of meetings. Phillip Kelly, former policy advisor to the NSW Health Minister, shared his knowledge of getting the most out of media interviews. The training was very well received by the Advocates, some who barely knew what advocacy was before the weekend. In the words of Nigel, our Community Advocate from the Central Coast, “a great and informative weekend. Thanks for giving me the opportunity to be involved in this brilliant program. I thoroughly enjoyed meeting the Andrews, Sarahs, and other advocates”. The Treat Us Well campaign is now live on the C me website www.hep.org.au/c-me/ where you can sign a petition and send an email to your Federal MP. The text of the email is already there. All you need to do is enter your postcode. We need as many signatures on the petition as possible and, likewise, emails to MPs. Please help by visiting the website and actioning the petition and MP email. You can add information on your personal experience if you like, which makes it even more powerful.

Talking the Talk

Image by Andrew Little

Nine Community Advocates from all over NSW recently came together for a training weekend to prepare them for our first advocacy campaign. Day one saw them learning more about advocacy with Sarah Ludowici from the Public Interest Advocacy Centre (PIAC). Rachel Simpson from the Standing Committee on Social Issues of the NSW Legislative Council provided advice on working with politicians. Our deputy CEO Andrew Smith explained how consultation with our community in 2011 led to the development of our 20 advocacy asks: http://tinyurl.com/d6u2w5y Day two saw Sarah George from Hepatitis NSW provide a comprehensive introduction to hep C and insight into challenging stigma and discrimination. David Pieper, with assistance from Garry Cox of the C me Project Advisory Group, led the Advocates in developing their personal hep C stories for better use in advocacy.

The Treat Us Well campaign is hitting the streets too! We are busy making appointments to meet with some of the key Federal and State MPs. We’ve met with the advisor to Peter Garrett, Minister for Education; the policy advisor to Jillian Skinner, NSW Minister for Health; Sharon Bird, Member for Cunningham; Stephen Jones, Member for Throsby; and Ed Husic, Member for Chifley. We have meetings scheduled with Senator Thistlethwaite, Tony Bourke, Minister for the Environment, and Tanya Plibersek, Federal Minister for Health. Want to meet your Local Health District Community Advocate: http://tinyurl.com/cz8k65k Warren F (Sydney), Lila P (South Eastern Sydney), Denyse R (South Western Sydney), Grenville R (Western Sydney), Mick F (Illawarra Shoalhaven), Nigel S (Central Coast), Phil L (Northern NSW), Steve G (Hunter New England), Darren E (Western NSW), Doug P (Far West NSW). •

If you’d like to get involved the C me Project as a Community Advocate or a Local Champion email campaigns@hep.org.au or phone C me Project Coordinator David Pieper on 02 9332 1853.

Hep Review

Edition 78

December 2012

my story

David’s story: triple treat? I

was diagnosed with hep C shortly after turning 40. This was almost 20 years ago. I assume I contracted the virus about 20 years earlier when for a period of about 18 months I was an occasional user of intravenously injected drugs. Following diagnosis I was referred to a specialist who booked me in for a biopsy. This was back in the days when a spring-loaded device about half a metre in length was used to fire a needle into the abdomen and with a bit of experience and a dose of luck, withdraw a sliver of liver. It was also back in the days when little was known about hep C. It had only recently been named, after being known as “non A non B hepatitis”. “You’ve got the virus. Something else will probably kill you, but it will shorten your life,” said the specialist. It was the first time I had seriously thought about my own mortality. He added “but someone will come up with a treatment soon.” I entered into a treatment program in 2000 – interferon and ribavirin. Midway through my 48-weeks, my viral load disappeared but shortly after the treatment ended the virus returned. I’m not sure if it is my imagination but I reckon I could feel it coming back. It was around this time also that the role of genotypes was being understood. I was genotype 1a, and that explained, to an extent, the failure of the treatment. The treatment was not as debilitating as I had feared it might be. I did suffer some depression but because the treatment coincided with a relationship break-up its hard to ascertain what caused what. Physical, as distinct from emotional side effects were not significant, at least to me. I felt a loss of energy, had mild anaemia and developed open sores on my legs that stayed for a considerable time.

Image by photogramma1, via Flickr.com Unless otherwise stated, people in our images are not connected to hep C.

www.hep.org.au

My treatment was the most advanced at the time and the medical profession could offer me no other way to deal with the virus. I tried Chinese herbs and one of the three practitioners I saw did manage to reduce my ALT load to a healthy level. Shortly after that he went out of business and I did not continue. An opportunity for further medical treatment came in 2006 when I moved house and started seeing another GP, who had contact with a researcher leading a treatment program at another hospital. I didn’t retry treatment until 2011; there were two reasons for this. Firstly, my partner’s and my desire to have a second child and, secondly, the fact that I was not interested in interferon/ribavirin. It was 2011 when I was offered treatment with interferon, ribavirin and boceprevir. I researched it and it seemed a good option. I started the program with a gung-ho attitude. I thought I could handle it but the first night – after my first injection – I found myself shaking uncontrollably for 90 minutes in front of a heater. My nights were often difficult. I usually sweated a lot. I often had to change my clothes three times. I reckoned I was handling it. I went to work and people asked me why I looked so bad. I told them I was OK. I told several people about the treatment I was on and my managers gave me latitude but there was still a lot for me to deal with. One Sunday I took myself to Emergency cause I felt so crook. Two days later I had to teach a two day intensive class for 50 adult students and the next day finished up in hospital in need of a blood transfusion. The ribavirin was scuttling my red blood cell count and the interferon was doing the same to my white blood cell count.

my story A reduction in ribavirin and the transfusion stabilised the red blood count but reductions in interferon did not lead to increases in the white blood cell count. It was dangerously low. Clearly my body was not handling the interferon well (which was curious because I had few such problems in the earlier round of treatment). Despite the fact that my viral load was undetectable for most of the period of treatment, staff in the clinic decided it was necessary to conclude treatment at 24 weeks. Shortly after the treatment was concluded the virus was once again detectable. So, the way I look at it is the treatment worked, but my body could not handle the drug combination. This means I could not reap the full benefit of the treatment and rid my body of the virus once and for all. I’m told there is currently research for treatment that does not include interferon. I am up for inclusion in a trial of this. I have confidence in the clinic that managed my treatment despite the failure of the program. The side effects, distressing and disruptive as they were to my family and me, have not been enough to put me off entirely. I’m glad to have a rest from the treatment. I feel better now it has ceased but the effects of the virus are identifiable. My feeling is that the long-term benefits of treatment are still worth pursuing. I anticipate success in this. Wish me good fortune. •

David, NSW Thanks so much, David, for sharing your story with us all. We’ll keep you updated on development of the interferon-free treatments.

Hep Review

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December 2012

feature Dealing with Change – the reality slap Although change may be hard to come to terms with, resisting it could be much harder in the long run, writes Charlie Stansfield.

hange is such hard work. From Lao-Tzu to Billy Crystal, the I-Ching to the Serenity Prayer, there’s no shortage of advice out there for dealing with change. But across diverse cultures and religions the underlying messages are the same. Although change may be hard to come to terms with, resisting it could be much harder in the long run. Getting through turbulent times is close to the heart for Dr Russ Harris, author of The Reality Slap. Most of us who have lived through a diagnosis of hep C, treatment and its outcomes, health complications, or adjustments to lifestyle know painfully well what Dr Russ is writing about when he says, “the reality slap hurts. We don’t expect it, we don’t like it, and we definitely don’t want it.” More importantly, he emphasises that the event that caused our rude awakening, such as an initial diagnosis or a poor treatment outcome, is only the beginning. “What comes next is much harder. Once the slap wakes us up, we then face the gap.” That reality gap is basically the difference between the life we thought we were going to have, and the one we’ve got. Perhaps we know it as having an illness, recovering from treatment that failed us, having to adjust our lives in ways to deal with the demands of health issues. For Sharon, 43, the issue was about alcohol, “I would always say no-one is going to stop me having my wine, but since the diagnosis, I haven’t drank and as a person used to an active social life, it is a part of my life I still really miss.” There are ways to cope with the changes that a reality slap brings. Dr Russ Harris suggests a four point strategy: •

Holding yourself kindly – self compassion

•

Dropping the anchor – being in the present

•

Taking a stand – asking yourself, “What do I want to stand for in the face of all this?”

•

Finding the treasure – looking beyond the reality gap

www.hep.org.au

Holding ourselves kindly means practising selfcompassion. I’m going out on a limb here, but with such pressure these days to “think positively”, plastering on a smile and insisting its just a scratch or chanting affirmations into a mirror when you’re feeling down is not part of self-compassion. Dr Harris takes the view that struggling to banish negative thoughts by replacing them with positive ones won’t work long term; because it just sets us up for a battle with our own minds. To get this point we need to accept that a human mind is hard wired to look for risks or threats in a situation. In other words, as a result of evolution our default thinking tends to be negative. And, as anyone who has ever tried to meditate knows, we have very little control over what topics our minds might get hooked with. As an example, try not to think about elephants. Don’t let your mind throw you any pictures of elephants. So what did your mind just throw you? See how long you can go without mind singing Abba’s ‘Dancing Queen’ now I have mentioned it. See what I mean? So the point is that since we can’t really control our thoughts, negative, positive, neutral (or just plain odd!) best to let them be, while we get on with our lives. Self compassion in all its different forms involves making room for sad or unhappy thoughts and feelings rather than trying to push them away with positive thoughts, food, alcohol, over-exercise, computer games, work you name it. Self compassion is about not feeling bad about feeling bad, learning to let thoughts and feelings be what they are without forcing them to change. This allows them to have less influence over how we manage our reality gap. The second step in Harris’s strategy is called ‘Dropping the Anchor.’ This is about grounding ourselves in the present moment. When facing a reality gap, especially a health related one it’s easy to get washed away in a storm of fears or worries based in the past or future. Dropping anchor doesn’t change the way we’re feeling, but it holds us steady until the storm passes. One of the things we can do when we need to ‘drop the anchor’ is practice mindfulness. Here’s a little exercise that can pretty much be practised anywhere, anytime.

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Image by tim caynes, via Flickr.com Unless otherwise stated, people in our images are not connected to hep C.

Hep Review

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December 2012

feature For example, push your feet hard onto the floor, straighten your spine and relax your shoulders. If you are practising a new technique like this, sometimes it helps to do it in an exaggerated way, to make sure you really are relaxing those shoulders. As you do this, take a long, slow deep breath. Look around you and silently name five things you can see Listen carefully to all the different sounds and silently name five things you can hear Notice where you are and what you’re doing. Immediately calming isn’t it? The next step in the strategy is called “Taking a stand”. As our reality gap can invite a host of conflicting thoughts and feelings, it can help to ask, “what do I want to stand for in the face of this?” Essentially this gives us the power to choose. Naturally, it won’t take the suffering away, but having the power to determine what we want to stand for, can remind us we have choices, and gives our suffering dignity. In the broader hep C field there are plenty of examples of people who have decided that their stand is going to be around using the energy they do have productively, such as raising awareness of the virus, being part of organisations like Hepatitis NSW that can educate and support others affected by hep C. In a nutshell this step is about not letting sudden unplanned change stop us from living according to our values. For example during 12 months of treatment, Paul (age 55) found there were things he could no longer do due to treatment side-effects. However, he valued being active and outdoors. This led him to “accept I could no longer surf but I could do gardening, so I thought about it and decided that would be my new physical outlet.” For others, the most important value in the face of a new diagnosis was to maximise health. Tina, 32 said, “I decided that I would make sure I knew as much as I could about the illness, and research all of the alternate ways of managing it.” So, when experiencing unwanted change in life, it can help to ask, “what do I want to stand for, in the face of this?” So far we’ve made an effort to been kind to ourselves, practised staying anchored in the moment, and we’ve worked out what we want to stand for in the face of it. If we practice these three

www.hep.org.au

steps we usually feel better mentally. It is from here we are able to find what Dr Russ calls, “the many treasures life has to offer.” This forms the last step in the strategy. A diagnosis of hep C or a struggle with its varied impacts can sometimes be all consuming. Finding the treasure is about taking a bigger perspective about what life has to offer. As Paul said of the restrictions brought on by treatment, “I missed the surf, but I found that when gardening outside and in my nature strip, lots of people I didn’t know from my neighbourhood would stop and chat. Some are now friends and my wife and I visit for drinks but I would probably have never met them if I hadn’t given up surfing.” When facing a reality gap it helps to remind ourselves that life is way richer, way bigger than that gap. This is an inherently personal perspective, so well meaning friends, relatives or counsellors beware. Finding the treasure is something only we can do for ourselves. And need I say, it has nothing to do with positive thinking as it is commonly understood. The following visualisation developed by Dr Russ can help. “Imagine your life as a stage show. All your thoughts and feelings are there, everything you can hear, taste, touch and smell. But there’s a powerful spotlight and it’s shining only on the reality gap. That’s all you can see. Now imagine that gradually the lights come up and you can see all of what’s on the stage. Family, friends, pets, hobbies, activities you give to, good food, music, art, all of things you love and value as well as all of the things that challenge you. It makes for a much bigger life when we can take this perspective, and find the treasure.” Dealing with change is not easy and the steps I’ve outlined here may feel clumsy at first. But when we’re tired of trying to be “up”, worn out from chanting affirmations, or sick of running away only to find the reality gap still there when we stop, this four-step strategy developed by Dr Russ Harris might be worth a try. •

Charlie Stansfield is a freelance writer, counsellor and coach. She writes regularly for Hep Review violettara@yahoo.com The Reality Slap, Dr Russ Harris, Exisle Publishing 2011 www.selfcompassion.org

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keyhole into our work

“When you are through changing, you are through.” Bruce Barton

Continued from page 7.

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” Alan Watts

Hepatitis NSW is in full swing planning activities for NSW Hepatitis Awareness Week which will run from the 23 – 29 July 2012. As in previous years, Hepatitis NSW is running the community grants program to engage with smaller community organisations around the state. In partnership with LHDs, Hepatitis NSW has developed a campaign to run during NSW Hepatitis Awareness Week which will include street banners, t-shirts, posters, stickers and balloons featuring a big black ‘C’, and posing the question “What do 1 in 100 people in Australia have in common?”. This provides backup for the NSW Ministry of Health-led “C” hepatitis C prevention social media campaign, to launch during NSW Hepatitis Awareness Week.

NSW Hepatitis Awareness Week 2012 & World Hepatitis Day

“If we don’t change, we don’t grow. If we don’t grow, we aren’t really living.” Gail Sheehy” “If you don’t like something, change it. If you can’t change it, change your attitude.” Maya Angelou

Hepatitis NSW is also looking forward to assisting Hepatitis Australia with the high profile Love Your Liver World Hepatitis Day Launch event to be held in Martin Place in the city of Sydney on Friday the 27 July.

“Change is such hard work.” Billy Crystal

Accredited GP training Hepatitis NSW has had a training program, “Viral Hepatitis – The Basics” approved for RACGP points so that we can provide accredited training to General Practitioners in NSW. Two sessions have been held to date, in Tamworth and Armidale in North-West NSW. The sessions were held over dinner and included input from a local Gastroenterologist, a CNC at the Liver Clinic, and an RN who works at the Liver Clinic. The sessions evaluated extremely well and Hepatitis NSW will carry out more GP accredited training throughout the year.

Image by pedrosimoes7, via Flickr.com Unless otherwise stated, people in our images are not connected to hep C.

Drawing Them In We recently held another set of successful “Drawing Them In” workshops in Newcastle for Transmission Magazine. HNSW Project Officers conducted some education sessions and developed storyline ideas for the Edition 12 comic, with a group of sex workers who are clients of ACON Newcastle. The creative workshops give groups from our priority populations a forum to contribute authentic characters, settings and ideas to the easy-read magazine. •

Hepatitis NSW

Hep Review

Edition 78

December 2012

my story

Heather’s story: Be the squeaky wheel

y half-brother and I joke that we’re now at the age where all we do is sit around and talk about our ailments. I’ve had breast cancer. My brother, who’s 10 years older and had a wild and crazy time in the psychedelic 1960s, has hep C from sharing needles back in the day. Though my brother has been clean for 25 years now, he had a few spots of cancer on his liver a couple of years ago. Last year, he was lucky enough to receive a liver transplant. Now, he is enduring yet another round of chemo to fight off the recurrent hep that is trying to harm his new liver. We both get our treatment at University of California, San Francisco, but our experiences couldn’t be more different. I go to the cushy Breast Care Center in one of UC’s satellite hospitals, Mt Zion. There, I enjoy free herbal tea and newly donated leather couches and skylights. They give me surveys after each visit to make sure that I didn’t have to wait too long, and if I ask, they’ll have a pre-med student come take notes during my appointment. They apologise if I have wait more than 10 minutes to schedule my next visit. My brother goes to a clinic in the sprawling main UC campus and it seems that there, he has to fight for everything. Partly, that’s his bumptious personality. Partly, I think, it’s because he doesn’t have a media-genic affliction like breast cancer. Seen any liver cancer ribbons lately?

He calls to nag the receptionists that it’s time for him to get this or that scan. He calls to nag the clinical coordinator that he’s supposed to get a check-up. He calls to nag his oncologist for a referral. He calls to nag the transplant coordinator about this antirejection drug, or that anti-hep C pill. He’ll show up hours early for appointments because they don’t always get the time right. He calls to get test results, and then he’ll call again. He’ll call and call until he gets an answer. Though he doesn’t wear it on his sleeve, my brother has a heart of gold. He’s the kind of guy who’ll go fishing, come home, and give all the fish to neighbours. He spoils my daughter rotten, buying her treats, taking her to archery ranges and movies and amusement parks. He dotes on his dog. But he’s no Mr Nice Guy when it comes to his treatment. I bet the receptionists duck for cover when they see him coming down the hall. “Oh no! Here comes that Mr Millar! He doesn’t let us get away with anything!” I bet they whisper to each other. My brother is the squeaky wheel. When it comes to his health, he doesn’t take no for an answer. If I had to, I’d be just like him. What about you? •

As I watch my brother swashbuckle his way through treatment, I’m amazed by how much more he has to fight to make sure things get done right.

www.hep.org.au

Image by cindy47452, via Flickr.com

By Heather Millar, an award-winning freelance writer and author. In her blog My Left Breast, she details her treatment for breast cancer as well as the science, history, and ethics of the disease. Abridged from webmd.com (29 June 2012) http://tinyurl. com/8pmg4r3

feature People too polite to challenge doctors Most people are too polite or scared to tell doctors when they disagree with their advice, and may simply ignore what they are told, researchers suggest.

survey of 1340 people found almost all would happily ask questions or discuss options when receiving treatment advice from their doctor. However, just 14% would actually speak up if they disagreed with the recommendation, despite the majority feeling they had the capacity to do so. Among those who would keep schtum, 47% feared that disagreeing would picture them as a “difficult patient”, while 40% thought it might damage their relationship with their doctor. Many thought it impolite to openly disagree, with only 14% saying this was socially acceptable. The results of the US survey of over-40s who had seen a doctor in the past year – published in the Archives of Internal Medicine – were similar across all age, ethnicity, education and income groups. The researchers said peoples’ reluctance or fear of disagreeing presented a “significant barrier to shared decision making” and might lead them to ignore medical advice. “Reluctance to express disagreement in the office may correlate with poor adherence outside the office,” they said.

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

Hep C: Take Control Program In a supportive environment, participants will work together over six weeks to share and develop skills to better manage their hep C. Some topics to be covered are: •

Better management of hep C and liver-related health problems

•

Treatment and dealing with sideeffects

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Working effectively with doctors and other health professionals

•

Making healthy lifestyle changes

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15 Oct 2012 at Wyong

The course will be facilitated by Jennie Hales and Amanda Burfitt who are from the Central Coast Local Health District.

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If you are interested or would like more info about Take Control, please phone Jennie on 4320 2390 or email on jhales@nsccahs.health.nsw.gov.au

Many healthcare decisions had multiple options and no one correct choice, so effective patientphysician communication was essential, they said. Further research was now needed to test what interventions could be applied to encourage patients to be more forthcoming with their disagreements. “This may well require attitude changes as well as behaviour change,” they said •

Abridged from dermatologyupdate.com.au (11 July 2012) http://tinyurl.com/8tmewkc

• • • Image by Vectorportal from http://www.vectorportal.com/

Hep Review

Where: Wyong Central, 38A Pacific Highway, Wyong When: 15 Oct to 19 Nov 2012 Time: 12.30pm – 2.30pm

Image by Leonard John Matthews via www.flickr.com Edition December 2012 Unless78 otherwise stated, people in our images are31 not connected to hep C.

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Needle program trial to go ahead at Canberra jail Prisoners will be given sterile needles to safely inject drugs with the ACT government announcing it will move to establish a controlled needle and syringe exchange program in Canberra’s jail. he proposed needle exchange has been mired in political limbo for years, facing strident opposition from the guards’ union and the opposition. But Chief Minister Katy Gallagher has announced that the needle exchange will go ahead. It will be based on a one-for-one model, where prisoners exchange a dirty needle for a sterile needle, overseen by medical professionals. Drug counselling and support will be offered alongside the needle exchange. The government plan will make the ACT the first place in Australia and the English-speaking world to have a needle exchange in a prison setting. An implementation group will now be created and Ms Gallagher expects the needle exchange to become operational by January 2012. Nine new cases of hep C have been recorded in the jail since it was opened. Seven of those new cases were recorded since December 2011. The announcement is likely to attract heated opposition from the guards’ union, the Community and Public Sector Union. The union has argued against giving prisoners needles, saying it puts guards in danger of attack.

www.hep.org.au

The CPSU had threatened strike action in the past if a needle exchange was established in the jail. But they have more recently expressed a willingness to negotiate with the government on the program. Public health experts, including the Public Health Association of Australia and the AMA, have been the key supporters of the needle exchange. Ms Gallagher made the announcement before a PHAA conference on health and justice and received rapturous applause. The announcement will likely become a key battleground just months away from the ACT election (20 October 2012). The opposition has previously threatened to repeal any needle and syringe program should it come to office in October’s election. Former prison boss Doug Buchanan was opposed to the needle exchange before his controversial departure in May 2011. But current superintendent Don Taylor has been more circumspect, saying it is not his place to advocate for particular public policy views. •

Abridged from smh.com.au (15 Aug 2012) http://tinyurl.com/8flbuc8 Also see page 2 and 9.

Image via http://zmkc.blogspot.com.au/2011/12/three-guesses.html

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Hep C problem among Skid Row homeless people is growing The hep C problem among homeless people in Los Angeles’ is likely to become a growing and expensive problem, according to a University of California study.

etween June 2003 and February 2004, researchers surveyed 534 homeless adults and found that the rate of hep C infection was 10 times the average population. Nine years later, researchers said, many of the participants are approaching a critical period when the liver can begin to rapidly deteriorate and the cost of care, including liver transplants, goes up dramatically.

The latest analysis of the figures comes in the wake of news that Los Angeles County public health officials found mounting health dangers in the Skid Row area, including hypodermic needles. City officials have struggled to maintain public health in the area since a federal court injunction issued in June 2011 limited sweeps by police and cleanup crews.

“Their hepatitis C can result in high costs to the public and the health-care system if progression of their disease is not halted through treatment,” said Professor Lillian Gelberg, of the UCLA, which collaborated in the study with the Public Health Institute’s Alcohol Research Group.

The injunction restricted police from seizing abandoned personal property from Skid Row dwellers. The city appealed, and the case is pending.

Researchers found that about one in four adults tested at dozens of homeless shelters in the downtown area were hep C positive. The prevalence among the general US population is about 2%. Four percent of those sampled at the time were HIV positive.

Hep C attacks the liver and kills more American adults than AIDS, said the researchers, who found that almost half of those surveyed did not know they were infected. The researchers cautioned that, aside from blood tests, much of the data on drug use and sexual behaviour was based on self-reporting and subject to recall bias and other errors. The results might not be applicable in other urban areas, they said. •

Abridged from dailynews.com (11 June 2012) http://tinyurl.com/8nhvvl6

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December 2012

Image by breezy421, via Flickr.com Unless otherwise stated, people in our images are not connected to hep C.

“The costs of their untreated hep C may start escalating soon, as many are approaching 20 years of infection, which is the point at which we see escalating risk for liver cirrhosis and endstage liver disease, requiring expensive health services utilisation and liver transplantation,” Gelberg said.

Researchers found that hep C prevalence was significantly higher among drug users and exprisoners.

www.hep.org.au

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December 2012

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Helping prisoners get healthier Justice Health Services director Professor Michael Levy leads a team of healthcare professionals who are striving to help prisoners leave Canberra’s three-year-old Alexander Maconochie Centre healthier than when they arrived.

ust as they can be universities of crime, prisons can be incubators for disease. A prisoner released back into the community with untreated hep C may be an infection risk to others. Those with untreated mental illnesses or drug and alcohol issues may be more likely to re-offend and former prisoners with unmanaged chronic conditions may be on a track towards requiring expensive public hospital treatment. Justice Health Services director Dr Michael Levy leads a team of healthcare professionals who are striving to help prisoners leave Canberra’s threeyear-old Alexander Maconochie Centre (AMC) in a better state of health than in which they arrived. The team’s successes were recognised in Dr Levy receiving the AMA’s ACT Annual President’s Award. Levy, a specialist public health physician, is grateful for the award but says he is just the head of a dedicated team which also includes nurses, GPs and advanced trainee GPs. They work alongside a forensic mental health team that includes psychiatrists, psychologists and social workers and are backed up by a range of health professionals from the Canberra Hospital. “We’ve got fantastic groups of clinicians serving this population with a benefit back to the community. It’s certainly returning less illness back to the community, without a doubt,” he says. Levy, an energetic father with short grey hair, talks passionately about the need to keep improving health services at the prison. He says prisoners often arrive at the AMC with a range of complex health problems. “Their immediate survival needs are so great in terms of mental health, addictions and drugseeking behaviours,” he says. Most with health conditions have not been receiving treatment in the community. “Overwhelmingly the majority don’t have a regular GP in the community. They use their local Emergency Department as their health service, so it’s always a crisis. There’s no health planning in their life.”

www.hep.org.au

About 70% of prisoners incarcerated in the ACT will have been assessed by a doctor for a mental health problem, almost half have been exposed to hep C and 63% have sustained a head injury. More than 90% have used illicit drugs, 67% injected drugs and 79% were intoxicated at the time of committing their current offence.

Six per cent have a major psychiatric illness and a much larger percentage have experienced posttraumatic stress, sexual abuse and sleep disorders. Many of the prisoners require ongoing relief for chronic pain linked to injuries that occurred outside the centre. “They’re not the normal life experiences of the general population,” he says. Prisoners receive initial health checks soon after arriving at the AMC. Then within 28 days, all prisoners meet with a doctor to discuss any ongoing health issues they have. “There will be a discussion it could be around a whole range of issues it could be around smoking, around your hep C status and the possibility of treatment, also blood pressure, blood sugar and blood lipids. It’s all open for discussion at that point.” Sydney-born Levy has had a varied medical career in Australia and overseas. He studied medicine at the University of Sydney and spent seven years working in paediatrics in Israel. He undertook further study at the University of NSW and qualified as a public health physician. He developed an interest in prisons between 1995 and 1997 when he worked on tuberculosis programs for the World Health Organization and visited detention facilities in several countries, including Mongolia, Burma and Papua New Guinea.

Upon returning to Australia, Levy worked briefly at the Australian National University before undertaking a study on TB for the NSW Prison Service. Levy was then involved in a range of prisoner health studies. Levy joined the ACT Justice Health Service two years before the AMC opened, initially working in the now-closed Belconnen Remand Centre.

Professor Michael Levy Image by Colleen Petch, via The Canberra Times

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His clinical role with prisoners includes prescribing treatments and supporting those undergoing hep C treatment.

Aboriginal Health Service at Narrabundah. The service was pioneered by the late Dr Peter Sharp of the Aboriginal Health Service.

Hep C treatment is offered in conjunction with the gastrointestinal outpatient clinic at the Canberra Hospital. Many prisoners had been successfully treated from beginning to end in the prison.

The prison this week also began trialling a clinic for clients with drug problems led by Directions ACT. The hope is that some of the prisoners will be returned to the care of Directions ACT after their release from prison.

To help prevent the spread of infections such as hep C, bleach is supplied for “conventional cleaning purposes” but is also known to be used by prisoners to clean drug-injecting equipment. Which bring us to the inevitable question about whether the spread of hep C will be reduced if a needle-exchange program was opened. He says that Justice Health will be a partner in whatever measures the government decides to implement to stop the spread of infections. Three less-radical novel health initiatives have already been introduced into the ACT Corrections system. The first initiative is a weekly pharmacist led-clinic at the AMC. The pharmacist opens up her weekly clinic, providing prescription and non-prescription medications as appropriate. The second is a clinic run by a doctor and healthliasion officer from the Winnunga Nimmityjah

Levy says the AMC has arguably the best methadone program in the Australian prison system. Prisoners with a demonstrated clinical need for methadone can get access to the treatment the same day they initially request it. In NSW, there is generally a six-month wait for methadone treatment. When he’s not working at the prison, Levy maintains teaching roles at the ANU and Monash University. But his greater source of professional satisfaction appears to come from the gratitude of prisoners who have benefited from health programs. ‘’It can be as subtle as seeing a client coming into the centre and they’re smiling again,’’ he said. •

By Peter Jean, Canberra Times Health Reporter. Abridged from canberratimes.com. au (26 May 2012) http://tinyurl.com/9gnnrqd

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Your mob, my mob, our mob A unique program for Aboriginal teenagers is helping spread the word about hep C in communities across NSW.

hen the Aboriginal Health and Medical Research Council (AH&MRC) decided to run a project in conjunction with Hepatitis NSW to increase awareness of hep C amongst young Aboriginal people across NSW, the statistics were on their side. “There was a necessity for health prevention initiatives for young Aboriginal people, as one in 12 Aboriginal people have hepatitis B or C,” says Lisa Camillo, project coordinator at the AH&MRC. “The rate is at least twice as high as for nonAboriginal people,” she says. Part of the challenge is that Indigenous Australia is a sharing culture. “It is common that people share toothbrushes and razors at home, and in some communities, blood brothers and sisters still persist. Also, tattooing is becoming a cultural practice. If you go on eBay you can find cheap tattoo guns that are very attractive to young people,” she says. But while tattooing equipment is cheap, sterilising equipment is expensive, resulting in dangerous backyard tattooing practices. The problem with hep C is compounded by another issue: drug use. “There is still injecting happening among Aboriginal people, especially in custodial settings – and now increasingly injecting steroids among young people. And when it’s hard to get sterilised equipment, people just share. There are needle and syringe programs where injectors can pick up clean equipment but unfortunately they are not accessible to everyone and still limited in numbers, especially in remote NSW,” Camillo says. As part of the solution, the project team decided to get the kids themselves involved. “I looked at the research to learn the most effective way to engage young people in health awareness. I found that peer education was the best way to achieve this – it was found to be the best way for young people to share information,” she says. Aside from peer education giving the young people a sense of empowerment, having teens teach teens has other benefits. “Peers are less likely to be seen as authority figures, who may be preaching from a

www.hep.org.au

judgemental position about how others need to behave,” Camillo says. It’s especially the case with the tough topics. “When you’re talking about taboos like using drugs or talking about sex, kids would rather go to their peers to ask them questions instead of a parent or a teacher. They’re not going to go to a parent and say ‘I heard if I shoot up and share a needle with my mate, I’m going to get a disease.’ They are going to go to their friends,” she says. In order to encourage kids to teach each other, Camillo turned to an unusual tool. “We used graffiti as a medium to attract young people. During the recruitment process, we had a graffiti artist run a workshop on how to use cans and stencils. We also informed the peers about hep C and they then had to come up with educational health messages to be sprayed on the Wellington skate park.” She says While the peer education project has funding for a year-long pilot in various locations across NSW, Wellington was one of the first cabs off the rank. “The Wellington Aboriginal Corporation Health Service did an amazing job of putting it all together,” Camillo says. Local Aboriginal health worker, Loretta Stanley, was involved from the start in the Wellington program. “I thought we could also use a local Aboriginal artist as well as a graffiti artist. That way we have the Indigenous art and the modern too,” she says. “It was good to keep it traditional, and also by having a local artist be part of it meant the kids got to know him,” says Stanley. “They interacted really well.” Getting the kids engaged required some planning. “We approached the local school to get Indigenous kids involved, we ended up with 16 graduating from the program,” she says. The program started with an education session about hep C delivered jointly with Bruce Cherry from Hepatitis NSW. The group was then encouraged to come up with its own messages they thought would be worth sharing.

Image by Robert Gourley, via Flickr.com Unless otherwise stated, people in our images are not connected to hep C.

â&#x20AC;&#x153;If you get kids in and give them ownership of something, they respect it.â&#x20AC;?

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Edition 78

December 2012

feature “We came up with Your mob, my mob, our mob, as well as an image of two kangaroos: one holding a toothbrush, and the other one holding razors. The words said ‘No sharing toothbrushes and razors’,” Stanley says. After the kids were taught how to use the cans and stencilling, the results were then graffitied onto the local skate bowl. “Wellington council gave us access to the skate park,” says Camillo. But this wasn’t just any old skate park. “It’s the deepest skate park in the southern hemisphere, and it used to have a number of discarded syringes laying around, so it was the perfect place for a health message on hep C. It was fantastic,” she says. Although the graffiti workshop was a teaser to get students interested in the topic, the real meat of the program comes with the follow up. The teens are now tasked with spreading the word to their peers in whatever way they see fit. “They can run a formal or informal peer education session on hep C. They can organise a session on hep C for their class, or talk to their friends when they witness somebody engaging in risky behaviours, for example, getting a backyard tattoo,” says Camillo. The role is practical, but also has an emotional benefit. “Some Aboriginal kids might never experience employment, even in their family,” says Stanley. “Peer education is a kind of employment, because they get a reward every time they do something in their community. It’s a good way for them to feel empowered to make a difference in their lives, and in other people’s lives,” she says. While the graffiti day was a huge success, it’s too early yet to judge the results of the program’s peer education component. However, Stanley believes firmly it will work. “If you get kids in and give them ownership of something, they respect it. I’d recommend this runs in every community,” she says. •

Sue White is a freelance health writer who regularly contributes to Hep Review magazine: reachsuewhite@gmail.com For more information about prison needle exchange and other harm reduction initiatives, contact the Hepatitis Helpline.

www.hep.org.au

Image by cityofroundrock, via Flickr.com

feature

Hepatitis Awareness Week and WHD The annual NSW Hepatitis Awareness Week was held from 23-29 July, incorporating World Hepatitis Day on 28 July. The week was a celebration of activities around the state.

epatitis NSW staff and volunteers assisted Hepatitis Australia in the highly successful and engaging “Love Your Liver Lunch” event held in Martin Place in the City of Sydney on Friday 27 July. Her Excellency Professor Marie Bashir AC CVO, Governor of NSW, launched World Hepatitis Day in Australia with a speech highlighting the staggering global scale of viral hepatitis. She noted that the World Health Organization estimates that one in three people have been exposed to hep B and/or hep C and more than 500 million people are currently living with chronic hep B or C. The Governor remarked that 28 July is one of the most important days in the year for awarenessraising efforts as despite the enormity of the epidemics, community knowledge remains very low.

The event was also supported by former Olympian, Nova Peris, and dietician and nutritionist Dr Joanna McMillan, who attended on the day to talk to people about liver health and healthy liver diets.

have in common?” These high profile banners complemented the rollout of the NSW Ministry of Health’s youth-focussed hep C prevention social marketing campaign. Hepatitis NSW also organised the Sydney arm of the inaugural World Hepatitis Alliance Guinness Book of World Records attempt by holding a novel event on World Hepatitis Day. This global event drew attention to the silence surrounding viral hepatitis by groups of people all over the world enacting the “Three Wise Monkeys” actions of see no evil, hear no evil, and speak no evil. Staff from Cancer Council NSW, HNSW and volunteers and friends and members of the public ensured we had fun and we are pleased the World Hepatitis Alliance and its partner organisations set the world record and we look forward to beating it next year! •

Sarah George, Hepatitis NSW

The event attracted a large number of office workers and passers-by and 1500 freshly packed healthy lunches and show bags full of information and goodies were handed out to the general community. The mascot O’Liver stole the show, dancing and showing the crowd just how well a healthy liver can perform.

A productive partnership between South Eastern Sydney Local Health District, the City of Sydney and Hepatitis NSW saw, for the first time, enormous streetlight pole banners line George and Castlereagh Streets, Sydney. They posed the question “What do one in 100 Australians Hep Review

Edition 78

December 2012

Image via http://www.neridamcmurray.com.au

For the fourth year, Hepatitis NSW ran our NSW Hepatitis Awareness Week Community Grants Program, funding 27 community-run projects across the state that raise awareness of viral hepatitis. Lots of communities were involved: young people, Aboriginal communities, the general community, culturally and linguistically diverse communities, people in correctional settings, health and youth workforces and among people who inject drugs. Some of the stand-out projects involved an online treasure hunt, a manual for emergency department workers, sports days, community information stalls and youth-focussed activities raising awareness of the risk of hep C transmission through unsterile tattooing and piercing.

my story

Wayne’s story: the transplant call I

’m back*. After 20 years coping with my disease, cirrhosis, I finally got the call for liver transplant. I was called in for preparation and found myself at the hospital on Mother’s Day. Then back home to await the big call. After eight weeks that call came and in I went. The normal pre-operation prep includes chest x-rays and lots of blood tests. It took from 11am to 9pm and the results were good – we were ready to go.

I kissed Karen goodbye, saying, “I’ll see you on the other side.” After a ten hour operation I woke up Saturday morning at 2.30am, having been out to it for 36 hours. The intensive care unit was my home for the next three days then I was moved up to the ward. Mostly I was a good guest but a couple of times I went off my head – it was the drug cocktail I’d been through and was still on. I felt like a bit of a yo-yo, up and down, spinning around. Things started to improve each day, though. I couldn’t wait to get home. I felt tired and didn’t feel like eating. Most of all, I felt I just needed a good night’s sleep. It’s something you don’t get in a hospital. Ten days after the operation, I was told I’d be sent home by the end of the week if everything went smoothly. I was starting to feel like the old Wayne, I knew from the other side. I couldn’t wait to get out of there. When I was finally told I was leaving, I was so excited about sleeping in my own bed and being back with Karen. I’ve got to say, the pain was still unbearable but it was a good pain. It meant I was going to survive.

www.hep.org.au

com

Wayne, NSW (* Wayne’s previous personal story featured in ED71, page 22)

Flickr.

•

e, via TschiA

Then I enter the next chapter of my life. I am so excited at being given a second chance at life which I will cherish forever.

e by

So now, I’ve just got to keep doing the right thing by myself and my liver. I’ve still got a lot of posttransplant procedures and treatments which could take up to 12 months.

Imag

I was told that some people can be on 30-40 tablets a day on discharge. I was on only eight, I believe because of my good health before I went in, and because of the very good liver that was donated.

Anita’s story: another case of discrimination? I

was at a really low point during hep C treatment when I decided that I needed a nice massage for my tense and tired muscles. I had just recently been told that I had cleared the virus and advised to continue treatment. I was eating well, not drinking alcohol, maintaining my full time job but felt like complete crap. I was emotionally and physically exhausted.

I booked in to see a woman, a remedial massage therapist, who lived very close to home, so I didn’t have to travel far to get home afterwards. I’d been to her before and she was pretty good at giving a relaxing massage. When I arrived she asked me how I was going and were there any health issues she could help me with. I told her I was tired, tense and exhausted, going through menopause and I needed some TLC. Unfortunately I also mentioned that I was currently nearing the end of hep C treatment, had

cleared the virus and the massage was a reward for all my hard work. Big mistake. I made myself comfy in her treatment room, it was warm and there was beautiful relaxing new age/ spa music playing. I was so looking forward to this. She came into the room and to my dismay she proceeded to give me a massage...with latex examination gloves on! I was so exhausted that, internally, I just began to cry to myself. I couldn’t even get the tears out I was so weary. In the emotionally vulnerable state I was in I felt I was paralysed by a wave of so many different emotions that I couldn’t even sort one from another. Needless to say I cut the massage short and have never been back. Maybe I should send her some information about the transmission of hep C, she obviously needs the facts. •

Image by vtayeb, via Flickr.com

my story

Anita, NSW

Hep Review

Edition 78

December 2012

hep chef Chickpea and sweet potato burgers This mild vegan burger goes well with any burger fixings and it cooks in the oven so no need for a fry up! The recipe makes six burgers. Burger 1 tin of chickpeas (or you may have your own soaked and boiled) 1 cup of pre-baked sweet potato chunks 1 tablespoon tumeric 1 teaspoon cumin 2 tablespoons of any chutney you have or yogurt or tahini ½ cup of pepitas (pumpkin seeds) a couple of cloves of crushed garlic Salad One medium sized beetroot grated 2 medium sized raw carrots grated 2 sliced shallots Red capsicum diced Lime juice Coriander Spread Avocado, mustard, Indian chutney or low fat mayo – or your favourite sauce, relish or topping. Method.

Place burgers on toasted sour dough bread rolls that have been spread with avocado and one of the other spreads. Top with salad. This is a low cost, low fat, low-Gi, tasty vegan recipe, and you should experiment with salads and spreads. •

December Hep Chef: Michelle De Mari

www.hep.org.au

Want to see your recipe here? Simply send it in to us. See address on page 67.

Image by Paul Harvey and Michelle De Mari

Combine all the burger ingredients with a stick blender or potato masher. Form the mixture into six patties, sprinkle with pepitas and place on a baking tray (either lightly oiled or using baking paper), refrigerate for 30 minutes and then place in an oven that has been pre-heated to 200 C and bake for 25 minutes or until firm.

Keeping a food journal is the key to shedding kilos

feature

Keeping a food journal, not skipping meals and eating out less often, particularly for lunch, will help you lose weight, according to new research.

cientists at the Fred Hutchinson Cancer Research Center in Seattle have looked at the impact of various self-monitoring techniques in older overweight and obese women. They showed that simple changes in behaviour can make a difference on the scales. They found that in the year-long study, women who kept journals lost 2.7 kilograms more than those who didn’t, but women who skipped meals dropped 3.6 kilograms less than women who ate regularly. Women who lunched in a restaurant at least once a week lost on average 2.3 kilograms less. “Knowing what you are eating and knowing how much you are eating seem to be the key,” says Anne McTiernan, the director of the Hutchinson Center’s Prevention Center who conducted the study. “For individuals who are trying to lose weight, the number one piece of advice based on these study results would be to keep a food journal to help meet daily calorie goals.” McTiernan says the more journals the women completed, the more weight they lost. Recording what they ate increased the women’s awareness of the foods and calories they consumed. Diet and exercise Expanding waistlines are a growing problem around the globe, leading to increased health problems and costs. Figures from the Paris-based Organization for Economic Co-operation and Development (OECD) showed obesity rates ranged from a low of 4% in Japan and Korea to 30% or more in the United States and Mexico. Body mass index (BMI), which is a measurement that compares weight and height are used to measure obesity. A BMI of 30 or more is considered obese, while a BMI of 25 to 29 is considered overweight.

McTiernan and her team studied 123 women, aged 50 to 75 years old, who lived in the Seattle area in the dietary weight loss intervention study. Their findings are published in the Journal of the Academy of Nutrition and Dietetics. They divided the women into two groups, diet only and exercise plus diet, and assessed their food intake, weight-control strategies, meal patterns and encouraged them to eat between 5000 and 8400 kilojoules a day. At the end of the study women in both groups lost an average of 10% of their body weight. “Exercise alone does not cause very much weight loss. Most studies have shown that with exercise alone you might be able to lose about two to three pounds (one to two kilograms) over a year,” McTiernan explained. “What exercise does do is keep weight off – long term – and it helps prevents loss of muscle.” The researchers advised people trying to lose weight to record everything they eat, to be accurate, to measure portions and to read labels. Accuracy was also important, so any toppings or condiments added to food should also be included in the journal. “It was the first study to look at a range of eating and weight-loss behaviours to see which ones worked and which ones didn’t,” says McTiernan. “These are the ones that made the difference.” •

Abridged from abc.net.au (16 July 2012) http:// tinyurl.com/8wyc2sm Maintaining a healthy body mass index has been shown to help improve hep C treatment result and long term hep C outcome. See here for a good BMI calculator from the NSW Ministry of Health: http://tinyurl.com/ ln8oed

Hep Review

Edition 78

December 2012

feature

HELLO HEPATITIS HELPLINE I’ve just had a fibroscan and got a score of 8.2. What does it mean? A fibroscan uses advanced ultrasound technology to assess the stiffness of your liver. It’s basically a much less invasive way of getting the information a liver biopsy would provide. It’s important information to have because the stiffer your liver, the more likely it is that fibrosis or cirrhosis exists. Fibroscan scores are usually broken up into three different brackets: scores lower than 7.5 usually indicate low risk of long term liver damage; scores between 7.5 and 9.4 usually indicate medium risk of long term liver damage; and scores of 9.5 and above usually indicate significant risk for long term liver damage (e.g. cirrhosis, liver failure or liver cancer). A score of 8.2 puts you in the medium risk category which means it could be a good idea to start thinking about making positive lifestyle changes. These could include things such as limiting or stopping alcohol, limiting or stopping smoking tobacco or marijuana and maintaining a healthy weight through diet and exercise. Looking after yourself could prevent or slow further fibrosis. If you are looking to make some lifestyle changes but are unsure of where to start you might like to join our Live Well group, which provides information on things like diet, alcohol and other drugs, treatment and mental health, as well as help with goal setting.

With a score like this it’s also a good idea to have follow up visits with your doctor every six months and a new fibroscan every 12 months so that you can keep track of how your liver is going. It might also be time to consider treatment. Getting in touch with your local liver clinic and talking to a hepatitis treatment nurse can help you decide whether treatment is right for you at the moment and also give you an indication of how likely you are to clear the virus if you do go on treatment. You can also call the Hepatitis Helpline and ask to speak with one of our Hep Connect workers: people who have gone through treatment and are willing to share their experiences. Listening to someone who has gone through the process themselves can often add something to your decision making process that talking to medical professionals alone cannot. If you would like more information about fibroscan, the Live Well group, or would like to organise a Hep Connect call, please contact the Hepatitis Helpline on 1800 803 990. For more information on new treatment options, also please give us a call on 1800 803 990. NB: the brand names for the new drugs are Victrelis (boceprevir) and Incivo (telaprevir). •

“Hello Hepatitis Helpline” is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details may have been changed to ensure caller anonymity.

www.hep.org.au

By Kirsty Fanton, Hepatitis NSW. NB: also see our Two Hep C Questions booklet. It provides detailed information on fibroscan, treatment and long term outcome. This new, free information booklet serves as a treatment decision-making guide.

FERRAL. INFO. SUPPORT. RE CONFIDENTIAL

hepatitnise helpli

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* Your feedback will help us develop a better magazine. For each edition we will draw one winner from all entries received who have provided a name and contact number. This offer is for NSW residents only. One entry per person.

Hep Review

Edition 78

December 2012

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Your feedback will help us continue to develop a better magazine – for you! 48 www.hep.org.au

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Multicultural HIV/AIDS and Hepatitis C Service Hep Review

Edition 78

December 2012

Multicultural HIV/AIDS and Hepatitis C Service 50

www.hep.org.au

feature

Body Armour

seen by almost 10,000 people in over 150 communities, schools and prisons across Australia.

annii, Harley and Rose are three teenagers; three individuals; three modern-day warriors on a quest for identity.

Fresh, sassy and razor-sharp, Body Armour has been specifically designed for high school audiences, to raise awareness of hep C in the community. The story follows the journey of three teenagers as they experiment with at-risk activities such as piercing, tattooing and blood sharing. Timely comparisons to ancient body modification rituals gently remind the audience of the importance of history and culture in the search for identity and the need to belong. Vibrant, funny and non-judgmental, the show’s power lies in its ability to open minds, discussions and possibilities.

Image via http://ilbijerri.com.au/

Body Armour has been touring NSW through Juvenile Justice Centres and Aboriginal Community Controlled Health Services as part of a state-wide hep C awareness campaign. It’s an initiative of the award-winning Ilbijerri Theatre Company, in collaboration with the Aboriginal Health and Medical Research Council of NSW, the Justice Health and Forensic Mental Health Network, Hepatitis NSW and the NSW Ministry of Health.

Fuelled with attitude and armed with ink and steel, their paths cross unexpectedly and they realise that they might have found more than they were looking for. The best way forward for them is to look back. Body Armour is from the team behind the multi award-winning Chopped Liver which has been

•

Abridged from http://tinyurl.com/8wn4x4z

Hepatitis C fac tsheets Illness outcom e Hep C outcom

es chart Long term outc ome Risk factors

Staying health

Further inform

ation

Hep C outcom

es chart

This chart show s the different ou tcomes that occu does not aim to r show your own potential outcome for people with untreated chro age when you go nic hep C. It (prognosis). Facto t hep C, body we ight and current rs such as your prognosis. You are advised to se alcohol intake, level of liver infl ammation may ek medical advic all influence your e regarding your own situation. On average, on e of within the first 12 every four people who contrac t hep C virus wi months. Three of ll clear their infec every four peop tion naturally le will have a ch ronic (ongoing) Of 100 people wi hep C infection. th chronic hep C who remain untre ated: After 20 years 45% may never 47% may develop develop significa 7% may develop nt moderate liver 1% may develop liver damage cirrhosis of the damage liver failure or live liver r After 40 years cancer 30% may never 45 % ma y de ve lop develop significa 20% may develop nt moderate liver 5% may develop liver damage cirrhosis of the damage liver failure or live liver r cancer

Long term outc

Most peop

ome

Hep Review G Dore / Hepatiti

Edition 78

s NSW, 2012

To view the complete 2-page factsheet and our range of other factsheets please go to http://tinyurl.com/3f2gx2p

December 2012

promotions

hep C bookmarks O

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

w w w.h ep .

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

Hepatitis NSW

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

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

sms

0404 44 Don’t discr

iminate

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

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Hep Review

Edition 78

December 2012

promotions

E vic E Ser R lth F Hea

SW N

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

opinion Time to lift hep C stigma

ew Zealand Needle Exchange National Manager Charles Henderson says people need to wake up to the fact that hep C can affect anyone and that stigmatising those with the disease could be doing the whole population harm. “Discrimination against people who are already vulnerable can be a profoundly negative experience and stop them from seeking further health care.” “When people are too scared to put their hand up for treatment, their health problems are likely to be compounded and their potential for spreading infection to others in the wider community increases,” he says. Mr Henderson made the comments at the 8th Australasian Viral Hepatitis Conference in Auckland. He says discrimination against those affected by hep C is very common and can come from employers, insurance companies and even family and friends. Mr Henderson says the respectful treatment of all HCV-affected people is crucial in reducing the impact of the illness on the community at large. “It is only by providing non-judgmental medical services that HCV affected people will access appropriate health care and the information they need to reduce the risk of passing the disease to others.

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

“Where there is openness, acceptance and compassion, people close to an HCV-infected person have little to fear because transmission of the disease is easily managed. It is only passed on through contact with blood, not through saliva or by touch.” “Campaigns to educate drug users are vital, but unless we also address the lack of awareness in the community and within the health sector – which feeds discrimination – we will not be able to significantly reduce rates of new infections and turn the tide of this neglected epidemic. •

Abridged from voxy.co.nz (10 Sept 2012) http://tinyurl.com/9rfm72j

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membership number

info pack sent?

Darryl Cotton dies Australia – Pop star, actor and TV host Darryl Cotton died on 27 July from liver cancer. Former manager Jeff Joseph said Cotton, 62, fought his condition bravely after being diagnosed in May 2012. “He was philosophical from the outset when told of his condition, but determined to fight until the end and maintain a positive attitude,” Joseph said. A founding member of Australian rock group Zoot in the late 1960s, where he played with Beeb Birtles and Rick Springfield among others, Cotton headed to Los Angeles when the band broke up. There he wrote songs for artists including Olivia Newton-John and Shaun Cassidy before returning to Australia in 1978 to pursue a solo career. He ventured into acting with a role on the TV soap The Young Doctors. He went on to co-host Saturday morning children’s program The Early Bird Show in the 1980s. “Darryl was much loved and highly respected by men and women alike, both in and out of the entertainment industry,” Joseph said. •

obituary Franz West loses hep battle Austria – Franz West, the revolutionary persistence sculptor died at the age of 65 in Vienna. West suffered from hepatitis for years. For many years, he was one of the most soughtafter Austrian artists. The Viennan explored the tension between prosthesis, pieces of furniture and art objects with often large sculptures. He was recognised at last year’s Venice Biennale with the Golden Lion for lifetime achievement. Franz West was born 16 February 1947 in Vienna. Travel, prison and, last but not least, formative friendships like those with the writer Reinhard Priessnitz were followed by some school visits or-abbrüchen. After this time of autodidactic studies, West studied from 1977 to 1982 with Bruno Gironcoli at the Academy of fine arts in Vienna. Countless important solo exhibitions and group exhibitions featuring followed his first exhibition all over the world. •

Translated and abridged from news.ch (26 July 2012) http://tinyurl.com/9yu587d

Abridged from theaustralian.com.au (27 July 2012) http://tinyurl.com/8en6qxs

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

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December 2012

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

Insect insomnia gives insight into restless legs

Treat people who use drugs to cut hep C rates

USA – Fruit flies are losing sleep over US research into a condition that causes patients to have an overwhelming and incessant urge to move their legs. A study, published in Current Biology, shows when fruit flies are made to lose a gene with ties to restless legs syndrome (RLS) they suffer the same disrupted sleep patterns and restlessness of human patients.

Australia – Researchers from Melbourne’s Burnet Institute say that reducing the prevalence of the disease among people who use drugs could also lead to a drop in infections across the wider population. People who inject drugs are at highest risk of infection with the virus but few receive treatment.

Senior researcher Professor Subhabrata Sanyal, of Emory University School of Medicine in the United States, says the study suggests there may be a genetic basis for RLS. The condition, which affects between 5-10% of the population, gets worse when patients attempt to rest, says Sanyal. For the study, the researchers removed the gene BTBD9 from the fly Drosophila and then tracked its sleep patterns. Sanyal says the research has created the first animal model of RLS. The team would now focus on better understanding what role the BTBD9 gene plays in sleep. “The BTBD9 gene is part of the machinery that modifies proteins,” he says adding if they can track which protein this gene binds to and what it does, it could lead to improved treatments for RLS. Sanyal says RLSis poorly diagnosed and there is a huge spectrum in the severity of the condition. There is currently no targeted treatment because so little is known about RLS. •

Abridged from abc.net.au (1 June 2012) http://tinyurl.com/6neshvn RLS is often quoted as a side effect of hep C treatment.

www.hep.org.au

Researchers used mathematical modelling on Victorian data to predict that hep C among injecting drug users could halve in 30 years if 625 users were treated every year, or 25 per 1000 people. The results were published in the Medical Journal of Australia. The head of the Centre for Population Health at the Burnet Institute, Margaret Hellard, said the findings could be replicated elsewhere in Australia. Prof Hellard said governments needed to fund services at a grassroots level, including primary and community care, drug treatment centres, and prisons, to allow injecting drug users to better access treatments. New drugs coming online over the next five years would reduce the duration of treatment and sideeffects, which would also help to reduce the disease’s prevalence, she said. •

Abridged from skynews.com.au (4 June 2012) http://tinyurl.com/8fp9axm See feature on page 22.

research updates Silymarin: herbal remedy for hep C does not work

Vitamin B12 supplements may help treat hep C

USA – Silymarin is an extract of milk thistle. Millions of people use this herbal remedy to treat chronic liver disease but it doesn’t do much for people with hep C, according to a new study.

Italy – Adding vitamin B12 to standard hep C treatment significantly boosts the body’s ability to keep the virus at bay, indicates a pilot study published online in the journal Gut. The effects were particularly strong in patients whose infection was proving difficult to treat effectively, the findings showed.

The new study was designed to measure the potential benefit of increasing doses of silymarin in patients with chronic hep C. To determine efficacy, researchers monitored levels of serum alaninie aminotransferase (ALT) – the enzyme found in the blood stream that is most often tested to identify liver disease. Low levels of ALT are normally found in the blood, but are elevated when the liver is damaged or diseased. Secondary outcomes included quality-of-life measures. The trial, which included 154 adult participants with chronic hep C, was conducted over the course of two years at four medical centres in the United States. Participants were randomly assigned to receive 420mg silymarin, 700mg silymarin or a matching placebo administered three times/week for 24 weeks, a standard duration of treatment. After 24 weeks, researchers found only two participants in each treatment group achieved lowered ALT levels. Neither the average decline in ALT activity nor quality-oflife measures at the end of treatment differed significantly across the treatment groups. “By all indications, silymarin is no more effective at treating hepatitis C related chronic liver disease, in those who failed standard therapy with interferon, than a placebo,” said Dr Rajender Reddy, professor of Medicine and medical director of Liver Transplantation at Penn Medicine, and senior author of the study. “This is a landmark study as millions of people around the world are looking for supplements and other forms of alternative medicines to help reduce ALT levels every year. “These data show that even higher-than-normal doses of silymarin don’t significantly reduce ALT levels for patients with hepatitis C.” The doses used in the trial were three and five times higher than the customary dose. “At the end of the trial we saw no significant changes in physical or mental health assessments between the patients who received treatment, and those who did not. Quality-of-life measures were also largely unchanged.” •

Experimental research dating back a decade suggests that vitamin B12 may have a role in suppressing HCV. The liver is the body’s primary storage centre for vitamin B12, but this capacity is impaired by diseases directly affecting the organ. The researchers therefore wanted to see if adding vitamin B12 to standard treatment would make a difference. Ninety four patients with HCV infection were randomly allocated to receive standard treatment or standard treatment plus vitamin B12 (5000 ug every four weeks) for between 24 (geno 2 and 3) and 48 weeks (geno 1). There was no difference between the two treatment approaches at four weeks, but there were significant differences in response at all the other time points, particularly 24 weeks after stopping treatment, which is the aim of HCV treatment. The effects were also significantly greater among those who carried the geno 1 strain, which is particularly hard to treat, and those high levels of infection (high viral load) to begin with. Overall, adding vitamin B12 to standard therapy strengthened the rate of sustained viral response by 34%, the findings showed. The authors conclude that until clear eligibility criteria for treatment with the new generation antiviral drugs are established, standard treatment plus vitamin B12 is a safe and inexpensive alternative, particularly for those who carry a strain of the virus that is hard to treat. They add: “This strategy would be especially useful in those countries where, owing to limited economic means, the new generation antiviral therapies cannot be given in routine practice.” •

Abridged from sciencedaily.com (17 July 2012) http://tinyurl.com/9b3k89t

Abridged from science20.com (19 July 2012) http://tinyurl.com/8pfuvcx

Hep Review

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December 2012

research updates Ongoing impact of hep C

Role of trust in needle sharing

Australia – Making National Strategies relevant to the vast majority of those affected by hep C requires a more complete understanding of the short and longer term impacts of infection. We used a systematic approach to determine what is currently known about the health and psychosocial impacts of hep C from exposure to ongoing chronic infection, and to identify what knowledge gaps remain.

France – This study, based on data from the MANIF 2000 cohort study, investigates the relationship between the lending of injecting equipment, drug use, and experience with HIV care. The sample comprised 224 HIV/HCV coinfected patients who reported having injected drugs in the previous six months and their 538 visits to clinical services. Longitudinal data were collected for medical status, and self-reported risk behaviours. A logistic regression GEE model was used to identify correlates of distributive sharing.

Databases were searched for primary studies published in the ten years from 2000–2009 inclusive. Two searches were conducted for studies on hep C in adult persons focusing on: outcomes over time (primarily cohort and other prospective designs), and the personal and psychosocial impacts of chronic infection. Outcomes reported in 264 included studies were summarised, tabulated and synthesised. Injecting drug use (IDU) was a major risk for transmission with seroconversion occurring relatively early in injecting careers. Persistent hep C viraemia, increasing age and excessive alcohol consumption independently predicted disease progression. While interferon-based therapies reduced quality of life during treatment, improvements on baseline quality of life was achieved post-treatment – particularly when sustained viral response was achieved. Much of the negative social impact of chronic infection was due to the association of infection with IDU and inflated assessments of transmission risks. Perceived discrimination was commonly reported in health care settings, potentially impeding health care access. Perceptions of stigma and experiences of discrimination also had direct negative impacts on wellbeing and social functioning. Hep C and its management continue to have profound and ongoing impacts on health and social well being. Biomedical studies provided prospective information on clinical aspects of infection, while the broader social and psychological studies presented comprehensive information on experiences such as diagnosis and disclosure. Increasing the focus on combined methodological approaches could enhance understanding about the health and social impacts of hep C along the life course.

After multiple adjustment, patients who reported trust in physicians were significantly less likely to report lending injection equipment. Promoting dialogue between physicians and injecting drug users (IDUs) may play an important role in HIV/ HCV positive prevention. •

Distributive sharing among HIVHCV coinfected injecting drug users: the preventive role of trust in one’s physician. AIDS Care Vol. 24, No. 2, February 2012, 232-238.

Body-building supplements hammer the liver USA – Supplements used for body-building and weight loss were the most frequent cause of liver injury related to herbal or dietary supplements in a review of the US Drug-Induced Liver Injury Network (DILIN). The findings were reported Digestive Disease Week (DDW) 2012 by Dr Victor Navarro of Thomas Jefferson University, Pennsylvania. “Body-building and weight-loss supplements were implicated in 31% and 18% of cases, respectively,” Dr Navarro said. “Hepatotoxicity due to herbal/dietary supplements can be severe, resulting in transplantation in 7% of cases.” Dietary supplements include herbal remedies, body-building supplements, health food supplements, and any such substance bought over the counter or online that is not prescribed by a physician.

Emma R Miller, et al. The ongoing impacts of hepatitis c - a systematic narrative review of the literature.

Dr Navarro said making these products safer will be a challenge. “The regulatory environment is a confounding factor,” he noted, explaining that ingredients can change from batch to batch.

•

Abridged from biomedcentral.com (18 Aug 2012) http://tinyurl.com/9rurpkf

www.hep.org.au

Abridged from medscape.com (22 May 2012) http://tinyurl.com/8v9es78

research updates EASL 2012 update summary The European Association for the Study of the Liver (EASL) holds one of the key annual international conferences dealing with viral hepatitis. These are key findings from some of the many new hep C treatment trials taking place around the world.

with genotype 1 HCV. Mean 2-3 log10 HCV RNA reduction from baseline that persisted for several weeks beyond end of treatment BI 201335, BI 207127, and RBV

•

GS-7977 in combination with peginterferon (pegIFN)/ribavirin (RBV)

• • • •

highly effective in treatment-naive genotype 1 HCV 97% rapid virologic response (RVR) rate = 92% sustained virologic response (SVR) rate at 4 weeks posttreatment (SVR4) 90% SVR rate at 12 weeks posttreatment (SVR12) in 12-week treatment arm

ABT-450/Ritonavir, ABT-333, and RBV

•

Tegobuvir and GS-9256 Plus PegIFN/RBV

•

Tegobuvir associated with pancytopenia in some patients when administered with investigational polymerase inhibitors (GS-9256 in this study; GS-9451 in a different study) plus pegIFN/RBV. These tegobuvir-containing quadruple therapy combinations, therefore, no longer being explored

• • •

Robust treatment response observed with 12 weeks of combination therapy with ABT450/ritonavir plus ABT-072 plus ribavirin in treatment-naive, noncirrhotic, genotype 1 HCV–infected patients with IL28B CC genotype Extended rapid virologic response (eRVR) observed in 100% of patients Sustained virologic response (SVR) at 12 weeks (SVR12) observed in 91% of patients SVR at 36 weeks (SVR36) observed in 82% of patients

•

Interferon-free regimen of daclatasvir plus asunaprevir produces 77% overall sustained virologic response (SVR) rate at 24 weeks (SVR24) in difficult-to-treat patients with genotype 1b HCV infection

•

• •

•

Monotherapy with miravirsen, first microRNAtargeted drug to enter clinical trials, safe and well tolerated Miravirsen yielded dose-dependent HCV RNA reductions without evidence of resistance in treatment-naive patients chronically infected

In interim analysis, combination of 3 directacting antiviral agents, GS-5885, GS-9451, and tegobuvir, plus ribavirin demonstrated high rates of sustained virologic response (SVR) at posttreatment Week 12 (SVR12) in noncirrhotic patients with genotype 1 HCV infection.

Daclatasvir and GS-7977

SPC3649-203 Miravirsen

•

Alisporivir plus ribavirin (RBV) achieved high sustained virologic response (SVR) rates at posttreatment Week 12 (SVR12) in patients with genotype 2/3 HCV infection. SVR rates > 80% in patients with rapid virologic response (RVR) without need for peginterferon (pegIFN) add-on therapy

GS-5885, GS-9451, Tegobuvir, and RBV

Daclatasvir and Asunaprevir

•

12-week, interferon (IFN)-free regimen of ABT450/ritonavir, ABT-333, and ribavirin (RBV) produced sustained virologic response (SVR) through 12 weeks posttreatment in 93% to 95% of treatment-naive patients with genotype 1 HCV

Alisporivir Plus RBV

ABT-450/Ritonavir, ABT-072, ABT-450, and RBV

•

Interferon (IFN)-free combination therapy with BI 201335, BI 207127, and ribavirin (RBV) in treatment-naive patients with genotype 1 HCV produced sustained virologic response (SVR) rates in 56% to 68% of patients at posttreatment Weeks 4-12. Response rates highest (up to 82%) in patients with genotype 1b HCV (regardless of IL28B genotype) and those with genotype 1a, IL28B genotype CC HCV

Interferon-free, once-daily, oral combination of daclatasvir plus GS-7977 demonstrated high rate of sustained virologic response (SVR) at posttreatment Week 4 (SVR4) in noncirrhotic treatment-naive patients with genotype 1, 2, or 3 HCV infection. 100% SVR4 rate in patients with genotype 1 HCV infection, with or without ribavirin, regardless of IL28B genotype or HCV subtype > 90% SVR4 rate in patients with genotype 2 or 3 HCV infection without ribavirin Abridged from clinicaloptions.com (22 April 2012) http://tinyurl.com/8ufjxzv

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December 2012

interferon-based treatment Triple combination treatment

Treatment generally lasts for either 24 or 48 weeks, depending on genotype.

Incivo (telaprevir) and Victrelis (boceprevir) have been approved by the Therapeutic Goods Administration for the treatment of chronic hep C genotype 1 infection.

Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria:

Each of these new drugs is approved for use in a triple combination regimen with peginterferon alpha and ribavirin, in adult patients (18 years and older) with compensated liver disease who are previously untreated or who have failed previous therapy. These new drugs are not currently funded by the Australian government. Please phone the Hepatitis Helpline for information about how you may be able to currently access boceprevir or telaprevir.

Standard combination treatment Standard treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily.

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. Age: 18 years or older. Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information).

Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative

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

www.hep.org.au

complementary medicine tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12.

Complementary medicine

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

Your clinician may want to establish your level of liver damage. Fibroscan is the preferred option although in some cases, liver biopsy may be suggested.

Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits.

Alternative access

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see ED24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see ED45, page 9).

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.

People wanting to access treatment outside of the government-subsidised Medicare S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. If you have private health insurance, the drugs may be claimable under your health cover. For more information, call the Hepatitis Helpline. NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Phone the Hepatitis Helpline for the contact details of your nearest centre. In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. •

Hepatitis NSW The above info is reviewed by the Department of Health and Ageing prior to publication.

Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. •

Will they consider all relevant diagnostic testing?

•

Will they consult with your GP about your hepatitis?

•

Is the treatment dangerous if you get the prescription wrong?

It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association.

•

How has this complementary therapy helped other people with hepatitis?

Phone the Hepatitis Helpline (see page 64) for more information and the contact details of relevant professional associations.

•

What are the side-effects?

•

Are they a member of a recognised natural therapy organisation?

•

How have the outcomes of the therapy been measured?

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

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

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December 2012

support and information services Hepatitis Helpline

Family and relationship counselling

For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers).

If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.

Prisons Hepatitis Helpline

A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition

Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa. asn.au General practitioners

It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services

People who inject drugs and want to access peer-based 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).

www.hep.org.au

Family Drug Support

FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Sexual health clinics

Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres

Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities

The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes information resources in some languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au NSP

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.

support and information services Legal advice

Coffs Coast family and friends support group

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

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.

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 phonebased service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW). Hep C Australasia online peer support

This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org AHCS online hep C support forum

Australian Hepatitis C Support 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 (note at this stage due to staffing we will not be running an evening Gosford group in May or June). Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy.

Hunter hep C support services

A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean hep C support group

Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466. Northern Rivers liver clinic support group

An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539. Port Macquarie hep C support group

Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 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.

Are you looking for services in your local area but canâ&#x20AC;&#x2122;t find anything? Contact the Hepatitis NSW C me Coordinator, David Pieper, at dpieper@hep.org.au

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December 2012

promotion

Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, Image via Google Images 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. •

promotion The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time. It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.

Please phone 02 6198 9800.

For more info, contact Katherine McQuillan on 6330 5866 or 0407 523 838

A historical perspective – Feb 1998 Headlines from 15 years ago: •

New awareness of HCV transmission (PCR) • DSP study project • Disability Support Pension update • Oz transplants • Tattooing and your health • What is harm minimisation? • Look back, look forward (DVD) • Biopsy – the inside story • Who’s leading the evolution? Nature, nurture or no one? • New interferon trial gets the go ahead • Herbal trial mooted • 1997’s AASLD Chicago conference If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy. •

Taken from The Hep C Review, Edition 20, Feb, 1998.

www.hep.org.au

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

noticeboard

acknowledgements Editor/design/production: Paul Harvey

Upcoming events

Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Stuart Loveday Lia Purnomo Andrew Smith Jeffrey Wegener

National Hepatitis Health Promotion Conference, Sydney, 14-15 November 2013. Aiming to increase the knowledge and skills of the community-based viral hepatitis workforce and community workers to effectively reach and engage with identified target groups, and to plan, implement and evaluate successful viral hepatitis health promotion projects.

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

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 S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Prue Astill Christine Berle Adrian Rigg Cindy Tucker First dog on the moon comic: Andrew Marlton

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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C.

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

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).

Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are funded by NSW Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.

Hep Review

Edition 78

December 2012

SHE’S ABOUT TO FIGHT TO KILL HER OPPONENT. AND YOU WILL APPLAUD HER FOR IT. You won’t be alone. Her daughter will be cheering her on, anxiously watching as her mother tries to kill off her disease. For Hepatitis C isn’t just affecting her. It’s affecting those who love her most. Her daughter knows that in Australia Hepatitis C is a leading cause of liver cancer. And she definitely knows she doesn’t want to find herself in a hospital room, sitting next to her mother, praying for a miracle. No. She wants to see her healthy. She wants to see her fight.

Hepatitis C can be cured. Chances for cure are better than ever. Start your fight today at fighthepc.com.au For more information on Hepatitis C visit your GP or call Hepatitis Australia on 1300 437 222.

Level 4, 66 Waterloo Road North Ryde NSW 2113 INFC-1049944-0003. Date of first issue: September 2012. MSD3210 www.hep.org.au