Hep Review ED79 by HepatitisNSW

HEP REVIEW Edition 79

Autumn

March 2013

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Christchurch Hep C Community Clinic: Meeting the client where they are (even after an earthquake) Arundhati Roy once urged us to “never simplify that which is complicated nor complicate that which is simple.” Charlie Stansfield reports on a community clinic taking an uncomplicated approach to harm reduction which is building respectful and enduring links to clients.

rundhati Roy once urged us to “never simplify that which is complicated nor complicate that which is simple.” The words from her 2002 “Come September” speech, could have been written with the varied challenges of hep C in mind. While the nature of the virus, working out how to live with or kill it can be complicated, the best way to respond to the public health challenges it presents is not. As a tiny clinic at the bottom of the globe has recently shown, there is much about responding to hep C that is really rather simple. The Christchurch Hepatitis C Community Clinic, established in 2008, has had a series of homes but a stable team of staff. Co-ordinated by Nurse Jenny Bourke who along with Mike, a part-time GP, Marilyn providing social work services, and Micky on reception, provide hepatitis C diagnosis, health care advice, information and support services to 270 active clients and about 400 others sitting on the books contemplating their next steps. According to Jenny, both these groups represent a significant proportion of the Christchurch community that are “affected by the double stigma of hep C and past or current drug use”, and generally understood to be those people that have difficulty accessing mainstream health care services. Of course, that’s not unique to Christchurch. People with hep C, whether they are active drug users or not, frequently report stigma in health care settings around the world, and this stigma is often cited as a barrier to accessing health care advice and hep C treatment. It’s easy enough to talk or write about “stigma”, like it’s something tangible, something “out there.” As lots of people reading this know, it’s a lot harder to convey the volatile mix of anger, shame and self-doubt that

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builds up inside when you’re on the receiving end of it. Being invited to feel bad about yourself doesn’t build connection, it builds a barrier. So, if services are to reach those most in need, stigma has to stop. What the Christchurch Community Clinic has demonstrated is that it is possible to start removing, some may say, kicking down, that barrier with one fundamental commitment. That is, to meet the client where they are. Taking this straightforward pledge means both philosophical and literal strategies. For example, a certain professional patience has to develop in order to support clients on a journey that may take a few twists and turns. A true environment of nonjudgmental care means if you’re still using – no big deal. All of this helps to ensure that those most at risk of developing long-term complications from hep C have access to medical treatment, support and advice.

The Christchurch Community Clinic has demonstrated is that it is possible to start removing, some may say, kicking down, the stigma barrier. The clinic’s first home was a building opposite the local Needle and Syringe Program (NSP). Visitors to the NSP were and still are offered information about the clinic from a Peer Support Worker. That’s the literal bit. How better to meet the client where they are than to provide staff who’ve been there? As Barbara, 42, who has been a Peer Support worker at the Christchurch Needle Exchange (NEX) for 15 years said, “People trust us. They know we have walked in their shoes, so they trust what we say is worth checking out.”

Background image: annzstream, via Flickr / foreground: Eric.Parker, via Flickr

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Barbara and the other peer support workers act as a bridge between the two services, sometimes even walking people over the road to the clinic where they can take up the offer of free testing, health checks and information. The clinic boasts a 91% attendance rate among people referred, which contrasts with the local hospital Liver Clinic that has about a 40-50% no show. Barbara is also a veteran of 12 months successful hep C treatment. She serves as something of a treatment ambassador within the local NEX, although pushing treatment or doing the hard sell isn’t her aim. “We get everyone in this NEX, from professionals to homeless people so what I tell them depends on what they want to know – all of them know I will speak the truth …” The clinic is recognised by its clients, a large proportion of whom also are seen at the clinic’s outreach program as being a source of information about hep C and treatment. Most start their journey with hep C at the clinic after free testing. Providing specialist support, advice and information at the same time and in the

same place as testing is a no-brainer. There are countless stories about the wrong sort of post-test information ranging from being told “You’ll be okay it’s not serious” to “Don’t worry one day we will be able to transplant you a new liver grown from pig cells.” (True – it happened to me). So, it’s not surprising that in the absence of clangers like that, the clinic’s client group tend to drop in, get tested, hang out and get informed. Some of the clinic’s success owes itself to the trust that may sometimes be more easily fostered in a small community. The NEX in particular has clients and staff that have known one another professionally and socially, for long periods of time, and the same may be true for the Methadone program users. But it’s more than that. The continuous outreach undertaken by Jenny and her team being seen, known, and out there serves to build positive relationships in other groups. The latter is so important when traditional health care settings can be so impersonal.

Hep Review magazine

Edition 79

March 2013

Image: annzstream, via Flickr

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When compared with a similar group of people in Sydney, far more of the Christchurch folks had received specialist assessment and were able to demonstrate a complex understanding about hep C and liver health. But the Christchurch Community Clinic doesn’t just make sense intuitively. Recent independent evaluation* revealed that when compared with a similar group of people in Sydney that don’t have access to dedicated services, far more of the Christchurch folks had received specialist assessment, and were able to demonstrate a complex understanding about hep C and liver health that had resulted in positive lifestyle changes such as adopting healthy diets, avoidance of alcohol and regular exercise. While Jenny Bourke and her team had spent a good couple of years removing the obvious barriers to health care, the whole notion of reaching out and meeting clients took on a special significance in February 2011 when the city was hit by a massive earthquake that killed over 150 people, reduced the clinic to rubble and created another set of roadblocks for clients seeking health care. Remarkably, the number of referrals to the clinic increased in the period just after the quake. A group of people who had not previously had any contact with health services found the clinic and sought help for the first time. As Jenny said, “For some it definitely was going through a process in their heads where they thought, ‘my gosh, I’ve survived this, I want to continue to survive’.” 4

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Many of us can relate to the idea that it takes a crisis to realise what our values are, but Jenny also noted that “Many people had the sense of having had a lucky escape, and had developed a new belief that ‘If I can live through this, I can live through anything’.” By now, bearing in mind Arundhati Roy’s wise words that started this story, you can probably predict how the Christchurch Community Clinic rose to the new challenges to service provision created by an earthquake. I like to imagine an uncomplicated process that went something like this: Clinic reduced to rubble? OK right, quick check of staff. All here. Neat. “Who has a house still standing?” “Mine is sweet-as.” “You, Micky? Can we use it?” “No worries, eh.” “Choice bro’ – we’re moving in.” So, the Christchurch Community Clinic ran out of the front room of the home of Micky, (surely a contender for receptionist of the year), for several months after the quake. Next problem, according to Jenny was client files, “I am pedantic about maintaining client confidentiality.” The files were locked in the remains of the old clinic building that had been cordoned off and given a red “no go zone” sticker. This may have been enough for other mortals to just throw up their hands in despair, or at least pull an extended smoko to think about it, but not Jenny Bourke.

feature “I couldn’t stop worrying about the files, and worried about providing service without the notes.” Solution? Sweet-talk some nearby construction workers to enter the building, locate the files and throw them out of a window into Jenny’s waiting arms. That sorted, the staff and clients of this extraordinary community clinic remained, in Jenny’s words, “Shaken, not deterred.” While some New Zealanders can be absolutely painful about the Bledisloe cup, as a rule they don’t tend to skite that much about the many great contributions they’ve made to the world: a woman PM long before we did in Australia, the pavlova, the Ugg boot and Rena Owen.

The Christchurch Hepatitis C Community Clinic is still here – despite four changes of location following an earthquake – and able to show us that if services adopt the willingness to meet clients where they are, the answers to these complex public health challenges are really rather simple. •

Charlie Stansfield is a freelance writer, counsellor and coach. She writes regularly for Hep Review violettara@yahoo.com *The evaluation cited in this article is Horwitz R, Brener L, Treloar C. Evaluation of an integrated care service facility for people living with hepatitis C in New Zealand. International Journal of Integrated Care. http://www.ijic.org/ index.php/ijic/article/view/819/1925

Image: Beverly & Pack, via Flickr

So we have to dig around a bit to find out what this little clinic over the ditch can teach us about the issues that have perplexed many in the hep C field.

How to remove the barriers to health services ensuring marginalised people access care and treatment?

Hep Review magazine

Edition 79

March 2013

editor’s intro

ere we are: in a new year. I hope you’ve had a good break and are excited about the challenges and potential that 2013 will throw our way. Bit by bit, we’re massaging Hep Review so that it appeals to a wider readership across NSW. This, more inclusive approach, will welcome people and promote the wider community to which we all belong: people affected by hep C here in NSW. We’ll continue to provide hepatitis B info and updates but remain respectful of the challenges and our limited capacity to work across the diverse hep B cultures and communities. I extend an open invitation to you for contributions to Hep Review. Please don’t hesitate to send us your letter, story, recipie or suggestion for our commissioned feature articles. Another good way to contribute is to complete the reader surveys found in each edition and online. You can really help shape Hep Review so that it remains a great read! Regards Paul Harvey, Editor.

ReaderSHIP survey winner We’d like to congratulate Geoffrey B who was the lucky $50 winner, chosen at random from the 11 readers who responded to our survey and entered our draw. We’ve sent a letter to you Geoffrey, care of your MIN number.

Weblink of the month

keyhole to our work WORKING WITH CULTURALLY DIVERSE AND ABORIGINAL COMMUNITIES Hepatitis NSW is a diverse organisation with over 30% of staff from culturally and linguistically diverse (CALD) and Aboriginal communities. We take a proactive, partnership approach to working with CALD and Aboriginal communities in NSW. The key to our work with CALD and Aboriginal communities is the partnerships we enjoy with other organisations: the Multicultural HIV and Hepatitis Service (MHAHS), the Aboriginal Health & Medical Research Council (AH&MRC) and the Aboriginal Health College. These organisations have a key role in developing resources and carrying out a range of hep C projects, through dedicated staff positions and a large number of co-workers whose first languages and experience reflect a very broad range of cultures and ethnicities. Education and capacity building. We support a number of projects including a partnership with the Aboriginal Health College, Aboriginal Health Promotion Students (University of Sydney) and the University of Notre Dame to include hep C in their work program for new students. We also worked closely with the AH&MRC on the roll out of their health promotion campaign “Where’s the shame, love your liver” by visiting towns across NSW and supporting community workshops. We distributed 20,000 copies of a special edition Transmission Magazine based on the Ilbijerri Theatre Company play Chopped Liver that toured Aboriginal communities in 2008 and 2009. We, and the AH&MRC, are currently promoting a special distribution of the Aboriginal focused Edition 13 of Transmission Magazine. It tells the story of Ilbijerri’s – Australia’s leading and longest running Aboriginal theatre company – hep C health promotion drama Body Armour.

Your average Australian drinks 100 litres of soft drink per year and health experts warn that all that liquid sugar is doing us no good. Obesity, diabetes and dental decay are linked to high sugar consumption [and are all issues for hep C] so how do we make water or milk more appealing? http://mpegmedia.abc.net.au/rn/podcast/2012/10/ lms_20121023_0905.mp3

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 Jorge Quinteros, via Flickr.com Unless otherwise stated, people in our images are not connected to hep C.

contents In 2011/12, Hepatitis NSW •

delivered 35 education sessions targeting the CALD and Aboriginal communities

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delivered workshops to over 300 individuals

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supported the NSW Users & AIDS Association with the development of their Aboriginal Reconciliation Action Plan.

Twenty one out of our 25 Hepatitis Awareness Week 2012 community grants were given to projects relating to CALD and Aboriginal communities. We, in turn, delivered viral hep training to several of the grant winners. We actively supported the Body Armour tour across NSW and facilitated a number of Q&A engagement sessions after the shows. We worked in partnership with MHAHS to develop and promote hep C awareness and prevention education workshops with young people form CALD backgrounds attending Links to Learning. This program implemented by the NSW Department of Education and Communities improves outcomes for young people aged 1224 and has a focus on effective transitions for at-risk young people. Within this partnership seven, two-hour workshops, were delivered to 80 young people from Arabic, Khmer, Pacific Islander, including New Zealand, and Vietnamese backgrounds. Representation, advocacy and awareness Hepatitis NSW staff serve on a number of strategic and operational committees of MHAHS, AH&MRC and other Aboriginal project-based committees across NSW. •

continued on page 41...

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.

Letters 8 Australian news 9 World news 14 Features Christchurch Hep C Community Clinic: Meeting the client where they are (even after an earthquake) 2 Keyhole to our work: Working with culturally diverse and Aboriginal communities in NSW 6 Walking and talking keep the kilograms away 20 Sofosbuvir and Daclatasvir shine 21 More of Canada gets funded telaprevir 22 C me campaign says treat us better 23 Canadian doctor champions novel way to fight liver cancer 27 Injecting drugs: important issues and urgent responses required 28 Harm reduction in prisons 30 Aspirin can half liver cancer risk 41 Alcohol quiz 40 Alcohol tips 43 Obituary: Remembering Jeff Bell 57 Opinion Hepatitis NSW campaigns 24 Australia lags behind in the battle against hep C, liver disease and liver cancer 25 We must avoid liver cancer blowout 45 My story Gareth’s story: Inside reflections 29 BJ’s story: a fortunate life 36 Research updates Research quick links 58 Prior alcohol consumption does not impact HCV treatment 58 Blood-borne viruses in elevated cancer risk among opioid-dependent people 59 Strong link between diabetes and liver cancer 59 Further evidence for people with hep C to get healthy 60 Volatile anaesthetics may cause chronic hepatitis 60 The needle in the haystack 60 Staying safe: what can research about people who inject drugs tell us? 60 The HCV partners study 61 Presentations from the Auckland viral hep conference: worker’s picks 61 Regular features Harm Reduction poster: injecting sites 34 Hep Chef – Roasted eggplant with feta 44 Hello Hepatitis Helpline 46 Support and information services 64

Hep Review magazine

Edition 79

March 2013

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letters

Thanks for signing

ONLINE

epatitis Australia would like to thank people for signing the online petition to gain approval of the two new hepatitis C treatment drugs, boceprevir and telaprevir, to be listed on the Medicare PBS.

chat

Despite this considerable advocacy effort, neither boceprevir nor telaprevir was included in the list of new medicines to be added to the PBS from 1 December 2012.

Did you know that Hepatitis NSW has an online chat service? You can 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

“Hepatitis Australia is shocked by the Government’s decision not to list the new hepatitis C treatments despite a positive recommendation from the Pharmaceutical Benefits Advisory Committee (PBAC) made in July. It’s a particularly difficult decision to accept when these treatments, the first new advances in a decade, have been available in many countries of the developed world for over a year,” said Helen Tyrrell, Hepatitis Australia Chief Executive Officer. Hepatitis Australia and its state and territory member organisations will be continuing advocacy efforts to obtain a PBS listing as soon as possible for the two new treatment drugs. You can help to show your continued support by liking Hepatitis Australia on facebook and sharing our updates among your social media networks. Also, you can follow us on Twitter at @HepAus to help us better get the attention of the Prime Minister and the Minister for Health. Additionally, you can take part in our online poll which asks voters when they would like to see the Australian Federal Government approve funding for telaprevir and boceprevir to be listed on the PBS. Please also share the link amongst your social networks. •

Melissa Jones, Communications and Projects Officer, Hepatitis Australia. Hepatitis NSW is also providing updates on the Medicare listing of the new treatment drugs through our Twitter feed: @HepatitisNSW and we have more information on our C me microsite: www.hep.org.au/c-me/

www.hep.org.au

news

Image courtesy of Google Images

Parliamentary Discussion of Hep C

Australia – The week beginning Monday 26 November 2012 saw hepatitis C and the issue of when telaprevir and boceprevir will be listed on the Pharmaceutical Benefits Scheme (PBS), discussed twice in Federal Parliament.

Success with hep C GP pilot program

The first occasion was a debate in the House of Representatives Federation Chamber on Monday November 26th covering World Hepatitis Day, the fact HCV has now overtaken HIV as the number one viral killer in Australia, and treatment options for people with HCV genotype 1.

New South Wales – A pilot program run out of a Sydney general practice shows hep C can be successfully treated in primary care, the GP leading the project says.

There were three speakers each from the Government and the Opposition during this discussion. The Opposition speakers all called on the Gillard Government to follow the recommendation of the Pharmaceutical Benefits Advisory Committee (PBAC) and list the new drugs on the PBS, while the Government MP Jill Hall said that there “is a recommendation going to cabinet very shortly.” Here’s hoping that the recommendation is the right one and Cabinet agrees so that treatments can be rolled out in the near future.

Dr David Baker presented results from his Darlinghurst clinic – one of seven practices involved in the pilot – at the annual RACGP conference. About 4,000 Australians were being treated for hep C each year, almost all in tertiary [hospital] clinics, he said; far short of the 12,000 that ought to be in treatment. Treatment for people with genotype 1 did not work well for many people, Dr Baker said. However, genotype 2 and 3 patients, the group targeted by the pilot, had a much higher cure rate. Dr Baker said the early results showed patients could be treated effectively and safely in general practice, provided an enthusiastic practice nurse was involved and patients were closely monitored. •

Abridged from gastroenterologyupdate.com.au (31 Oct 2012) http://tinyurl.com/crv9owm

The following day, in Senate Question Time on Tuesday 27 November, the Greens Spokesperson on Health, Richard Di Natale, asked the Minister representing the Health Minister, Joe Ludwig, specifically about why these drugs have not yet been funded through the PBS. Unfortunately, Senator Ludwig did not provide a clear answer on when this might happen, but it is encouraging to know this issue remains on the political agenda in both houses of parliament. •

Alastair Lawrie, Hepatitis NSW

St Vincent’s viral hepatitis clinic •

Image courtesy of Google Images

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

Hep Review magazine

Edition 79

March 2013

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Tests for South Aussie assailants

top end Australia hep B vaccination

South Australia – People who assault police should be required to undergo blood tests to check for a communicable disease, the Police Association says.

Northern Territory – A newborn vaccination program first introduced for Aboriginal babies in the Northern Territory has made significant inroads, significantly helping in the push to eradicate chronic hep B infection in Australia.

It wants new laws to end the harrowing six-month wait for medical clearance police officers are forced to endure if exposed to bodily fluids when bitten or spat on. Under current law, it is only the assaulted officer who must be tested. “Incubation periods for serious diseases such as hep C and HIV mean that police and their families must endure the horrible stress of waiting months before their health is cleared,” said Police Association president Mark Carroll. •

Abridged from heraldsun.com.au (21 Oct 2012) http://tinyurl.com/ckhnbcu The blood of someone with hep C needs to get into the bloodstream of someone else for transmission to occur. This makes transmission of hep C to police officers quite unlikely. When transmission risk does occur, a PCR blood test at three weeks can be used to confirm or clear hep C transmission. HepNSW

Researchers from UNSW’s Kirby Institute and the Northern Territory’s Department of Health have published a study in the international journal Vaccine that shows rates of infection are 80% lower in young Aboriginal women born since the program began in 1988, compared to those born before the program began. In Aboriginal women from remote communities, the decrease has seen rates fall from 5% to 1%. Researchers say it may be expected that a similar decline will be seen in other Australian states and territories once children vaccinated from 2000 onwards become old enough to be included in hepatitis B testing programs. Hepatitis B is a potentially life-threatening infection that causes liver cirrhosis, liver cancer and liver failure. The study’s findings highlight the importance of immunisation programs in preventing chronic diseases such as hepatitis B, the researchers say. •

Abridged from medicalxpress.com (14 Nov 2012) http://tinyurl.com/czsx3wx

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

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Hep C: is the future here?

New hep C treatments webinar

Victoria – The Alfred Hospital’s Education Resource Centre for HIV, Hepatitis and STIs has released a new two part videocast series entitled “Hepatitis C: Is the future here?”. This presentation is the next instalment in a continuing series of talks aimed at making HIV, Hepatitis and STI education available to you from your workplace PC at a time that suits you.

Australia – Hepatitis Australia recently coordinated a web based seminar on the new hep C treatments. This expert panel discussion was moderated by ABC’s Dr Norman Swan, and featured panellists Professor Greg Dore, Stuart Loveday and Sue Mason. View the video here http://tinyurl.com/a767ywu Download the slide set here http://tinyurl.com/ a8mgohs

Access the presentation here http://tinyurl.com/ a2uheyj •

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

New hep B resource First national hep B for health workers testing policy Australia – It is essential for primary care providers to play an active role in the testing, diagnosis and management of people with chronic hep B. This resource provides guidance for primary care providers in opportunistic testing and screening, monitoring and referral, consideration of treatment, and vaccination. Click here to access the resource http://tinyurl. com/b9ppsn4 •

Australia – ASHM has launched the first national testing policy for hep B. The purpose of this document is to define appropriate testing pathways using currently available technologies. It is relevant for all health professionals ordering and interpreting tests for hep B. View the full policy document here http://tinyurl. com/b37d2n2 •

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

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 magazine

Edition 79

March 2013

news

Australia set for gastro overload?

BENEFITs OF REGULAR PSYCH SCREENING

Australia – Australia is set for an oversupply of gastroenterologists and hepatologists in the next decade, a new report from Health Workforce Australia predicts, but stakeholders are dubious.

Australia – Regular psychiatric screening has been recommended for patients with chronic hep C following research into the prevalence of anxiety and depression.

By 2018, the country will have roughly a hundred more gastroenterology and hepatology specialists to service demand. The report predicts there will be 923 such specialists but a demand for just 820. By 2025, there will be 1045 specialists, but a demand for just 935 – a surplus of 110.

A study of nearly 400 patients from 2006 to 2010 found probable prevalence rates of 41% for anxiety and 27% for depression, which were higher than the community norms. Younger patients in particular experienced increased anxiety, the researchers found.

However, stakeholders said a number of important developments were not reflected in the projections, which were based on a combination of hospital separations and Medicare data. They advised that demand is expected to rise as procedures like the colonoscopy become more common alongside wider uptake of bowel cancer screening programs. New treatments for common conditions such as hep C could also alter demand.

Depression and anxiety were commonly induced by the antiviral therapies, the authors said.

In good news for patients, the speciality was one of just a handful perceived to currently have an adequate supply of practitioners, alongside cardiology and neurology.

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Abridged from gastroenterologyupdate.com.au (14 Nov 2012) http://tinyurl.com/d4dax5g

“Evidence has shown that antidepressants are effective in treating antiviral treatment induced depression,” they wrote. “This demonstrates the need for regular psychiatric screening and, where necessary, subsequent referral for mental health treatment.” By Neil Bramwell. Abridged from Medical Observer, 09 Nov 2012. Hepatitis NSW offers programs aimed at supporting people with hep C: Hepatitis Helpline, HepConnect, Live Well and Let’s Talk, our new counselling service.

resource OF THE MONTH

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

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NCHSR reports on ETHOS

Behaviour Report 2012

Australia – Worldwide there is a growing interest in the provision of care and treatment for hep C within opiate substitution treatment programs. It’s within this context that the National Centre in HIV Social Research has released their report, Integrating treatment: key findings from a qualitative evaluation of the Enhancing Treatment of Hepatitis C in Opiate Substitution Settings (ETHOS) study.

Australia – The report presents data from current NCHSR behavioural and social research, focusing in particular on studies assessing trends over time or addressing emerging issues.

Click here to view the report http://tinyurl.com/ arn7p7q •

Click here to download a copy of the report http:// tinyurl.com/a97nw48 •

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

Aboriginal Surveillance Report 2012

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

Surveillance Report 2012 Australia – The Annual Surveillance Report has been published by the Kirby Institute each year since 1997. It provides a comprehensive analysis of HIV, viral hepatitis and sexually transmissible infections in Australia and includes estimates of incidence, prevalence and behavioural risk factors for hep C infection.

Australia – This report provides information on the occurrence of blood-borne viruses and sexually transmitted infections among Aboriginal and Torres Strait Islander people. Its aim is to stimulate and support discussion on ways to minimise transmission risks, as well as the personal and social consequences of these infections within Aboriginal and Torres Strait Islander communities.

Click here to access the report http://tinyurl.com/ behx9gq

Click here to access the report http://tinyurl.com/ agurymj

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

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 magazine

Edition 79

March 2013

Image courtesy of Google Images

news

Egypt’s registry is world’s largest Egypt – Egypt has launched a first-of-its-kind detailed patient registry. This network will be considered the world’s largest database of hep C patients. “According to the data we rely on, 10% of Egyptians suffer from the disease,” said Dr Wafaa El-Akel, Executive Manager of the register.

India revokes patent for Pegasys

Dr El-Akel said the network helps assess the extent of other issues associated with the virus, helps quality patient care and prevents infection at its root – all by analysing the new data and determining the most common means of infection.

India – In a landmark victory for patients’ rights groups, the Intellectual Property Appellate Board in India has revoked Roche’s patent on the hep C drug Pegasys. With a price tag of almost [A$9,000], Pegasys treatment is so prohibitively expensive in India that it is not even used in government hospitals. After Roche received the 2006 patent, an aid group for injection drug users, Sankalp, partnered with the Lawyers Collective HIV/AIDS Unit to challenge the patent.

The registry marks a new era in controlling the disease in Egypt, according to Dr Wahid Doss, Dean of the National Liver Institute. To date it includes the records of over 32,000 patients. Dr Doss credits and thanks two main entities in that regard: Hoffmann La Roche’s support for the project as well as the Academy of Scientific Research and Technology.

This could lower the cost of treatment enough to make it accessible to the estimated 12 million Indians living with the virus.

The Ministry of Health has so far spent A$312 million to support the project and succeeded, in cooperation with manufacturing companies, in providing globally-approved treatments at the lowest cost worldwide.

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Abridged from hepmag.com (5 Nov 2012) http://tinyurl.com/c542jro

Abridged from english.ahram.org.eg (22 Oct 2012) http://tinyurl.com/dxelump

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

Alarming increase in Europe needs to beef Egypt liver cancer up its hep FIght Egypt – Incidence of hepatocellular carcinoma (HCC), has doubled in Egypt over the past 12 years, Dr Ashraf Omar, of Cairo University, said at a conference organised by the Egyptian Society for Liver Cancer (ESLC). Prevention was the keyword highlighted by Dr Gamal Esmat, head of the National Committee for the Control of Viral Hepatitis, who said that heps C and B are the two main causes of liver cancer, so the earlier they are detected and treated the better in terms of preventing the disease from developing into liver tumours. He noted that through 23 treatment centres nationwide, the national committee has treated more than 200,000 patients, “Statistics show that only 4% of Egyptians have ever [been tested],” Dr Esmat pointed out. “In a country where hep C has such prevalence, this is a catastrophe,” he added. •

Abridged from english.ahram.org.eg (3 Nov 2012) http://english.ahram.org.eg/ NewsContent/7/48/56917/Life--Style/Health/ Alarming-increase-in-most-common-livercancer-must.aspx

HALC

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

• • •

One in 22 Europeans suffer from hep B or C – 23 million people. Despite its considerable impact, prevention, screening and treatment receive too little attention from health policy makers. There are deficits in population screening across Europe, as a recent comparative survey has revealed. Since only a minority of patients actually develops symptoms such as jaundice, this means that a large proportion of infections will be detected late. Thus, it is more likely that patients will unknowingly pass on the virus and they run a considerable risk of developing secondary damages, in the worst case liver failure, cirrhosis and cancer. In some countries, deficits in preventive measures, such as HBV vaccination of children or major risk groups like health care workers, drug users or people living with people who are infected with hepatitis B also contribute to the proliferation of the virus. Both fields provide ample opportunities for politicians to improve standards. Exchanging best practice between member states on these issues as well as how to better raise awareness would help tackle the disease across the continent. Furthermore, there is a lack of sound data on hepatitis. Data gathering should be shared where possible to improve the understanding of infection paths and risk groups.

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: •

Europe – Viral hepatitis is one of the top ten infectious disease killers in Europe with 125,000 patients dying annually. Despite this impact, it receives too little attention by health policy makers, says member of the European Parliament, Marina Yannakoudakis.

France is the only EU member which has developed and implemented a national plan on hepatitis. It is thus not a huge surprise that France scores well in the study. A similar initiative exists in Scotland.

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.

Bulgaria, Germany and Croatia have taken first steps to develop and implement such plans. The experiences are promising, but more serious efforts will be necessary. •

Abridged from euractiv.com (15 Nov 2012) http://tinyurl.com/d3z5pzb

Hep Review magazine

Edition 79

March 2013

news

Hep C oral drugs impressive in trial

New screening a game-changer

USA – A trio of oral medicines to treat hep C produced an unprecedented cure rate in patients who had previously failed to benefit from standard treatment, plus a very high cure rate for newly treated patients, Abbott Laboratories said recently.

UK – A new hep C test could change the way the world is screened for the illness.

Detailed data from the Aviator trial were released at the annual meeting of the American Association for the Study of Liver Disease in Boston.

Led by the Research Institute of the McGill University Health Centre, the results show that these new tests are highly accurate and have a rapid turn-around time. This discovery will change screening techniques and eventually help to better manage the hep C infection globally.

There are high hopes for Abbott’s three drugs: a protease inhibitor called ABT-450, a polymerase inhibitor, ABT-333, and NS5A inhibitor, ABT-267. They are used without interferon.

Dr Nitika Pant Pai, assistant professor in the Department of Medicine at McGill University explained that the new techniques resulted in 9799% accuracy.

Abbott said it plans to move ahead with large Phase III studies of the three drugs – which are used either with or without the standard antiviral pill ribavirin.

Providing results within 30 minutes, these point-ofcare tests (POCT) usually don’t need specialised equipment and many do not even need electricity.

Ninety-three percent of patients for whom prior therapy had failed had a sustained viral response, meaning they were cured, after 12 weeks of taking the new drugs, plus ribavirin. The patients had the most-common, and hardest-to-treat, strain Genotype 1. “Nobody anywhere has broken the 50 percent mark in cure rates for this population,” said Scott Brun, a senior Abbott research executive. “These are robust results.” •

Abridged from dispatch.com (11 Nov 2012) http://tinyurl.com/cjhjwj7

“It is now time to optimise their potential by integrating them in routine practice settings,” she said. •

Abridged from bestmedicalcover.co.uk (17 Oct 2012) http://tinyurl.com/c2v9nyf HCV POCT is not happening in Australia yet. There is currently an application from the industry in with the TGA for TGA approval and a couple of companies are ready to go in Australia. An intended initial pilot came up against a good few hurdles. Watch this space though as HCV POCT is a very exciting and essential ingredient in the future response to HCV prevention and management and treatment. HepNSW

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

Wal-Mart stores offer hep B shots

25 mill Indonesians with viral hep

USA – Wal-Mart will start offering vaccinations for infectious diseases beyond influenza and pneumonia at 2700 US stores as the retailer continues edging into health care services.

Indonesia – Poor awareness about hepatitis infections and a lack of treatment have made the disease a growing public health threat in Indonesia, experts say.

The chain will offer immunisations including shots for hep B. The vaccinations will be available via pop-up kiosks at the front of Wal-Mart stores, under a contract with Mollen Immunization Clinics, which has been administering flu shots for WalMart over the past few years.

An estimated 25 million Indonesians – around 11% of the population – have either had hep B or C but only about 20% of them know, said Rino Gani, the chairman of the Indonesian Liver Research Association.

The expansion comes as Wal-Mart is trying to broaden its market share in the multi-billion dollar health care business as it searches for new avenues for growth. The retailer successfully launched a Medicare prescription drug plan with hospital operator Humana in 2010, and scored a big hit in 2006 with a $4 generic-drug program. “The goal is to take advantage of the fact [that people] are in our stores shopping for groceries every day,” said Dr John Agwunobi, Wal-Mart’s president of health and wellness, and a former US assistant secretary for health. “We want our customers to begin to see us as a destination for preventative health care.” Wal-Mart said that by using a network of nurses, instead of pharmacists, it will be able to administer a larger variety of shots to more people. •

Abridged from foxnews.com (23 Aug 2012) http://tinyurl.com/boya9sm

In 1997 the government started vaccinating children aged under five against hep B, reaching 82% of the under-five population by 2009, said Mohamad Subuh, director of the communicable diseases department of the Health Ministry. But some groups in Indonesia have campaigned against vaccination, saying there is no proof that vaccines can protect children from diseases, and that they could even be dangerous to health. A coalition of hard-line Islamic groups – Sharia4Indonesia – says vaccination is a Western conspiracy to weaken children in developing countries so as to create a “new world order”. The groups organised a rally in Jakarta in 2011, staging a performance about “the dangers of vaccines”. Health Minister Nafsiah Mboi said that without vaccination, millions of lives are in danger. •

Abridged from thejakartaglobe.com (20 Aug 2012) http://tinyurl.com/cdmks2s

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 magazine

Edition 79

March 2013

news

A new age drug love Humanised mouse triangle livers help hep C USA – Vertex Pharmaceuticals has found not one but two new beaus, although it’s keeping the relationships casual. For hep C where treatment combinations will be the new norm, getting in bed with as many players as possible is critical. Assuming of course you’re not Gilead Sciences or Abbott Labs, which have all the drugs they need to make a decent combination on their own. Vertex doesn’t. It has VX-135, but it needs to combine it with other drugs to reach the high cure rates Gilead and Abbott have put up. Enter Johnson & Johnson and GlaxoSmithKline. In separate deals, Vertex announced that it will test VX-135 with Johnson & Johnson’s simeprevir and Glaxo’s GSK2336805. Johnson & Johnson and Vertex will split the cost of the phase 2 trial scheduled to start early next year. Once they see that data, they’ll presumably figure out a development plan. The deal with Glaxo has a similar structure. The companies will split the cost of a phase 2 proofof-concept study combining VX-135 and NS5A inhibitor GSK2336805 with or without ribavirin, a generic drug. Left out in the cold is Bristol-Myers Squibb, which also has an NS5A inhibitor called daclatasvir. Of course, considering that the deals seem pretty casual, Vertex might be able to partner with Bristol as well. Love square, anyone? •

Abridged from dailyfinance.com (1 Nov 2012) http://tinyurl.com/adzx23f

USA – How do you detect a drug-safety problem before it trips you up in human trials? Try making a mouse with a liver close enough to human to predict what the drug you’re testing will do. A team led by Dr Gary Peltz designed and used such mice to show precisely how a compound showing promise for fighting hep C would be metabolised in people. Not only that, but these “humanised” mice accurately predicted how the compound would interact with another, already approved hep C drug in human subjects. With more than 30% of all people over age 57 taking five or more prescription drugs at any given time, drug-drug interactions are a serious concern. The liver is the body’s chemistry set. In this hardworking organ, batteries of enzymes (molecular machines that do most of the body’s chores) operate in careful sequences like workstations of an assembly line. Together, they manufacture myriad substances and modify existing ones. They also constitute the body’s frontline detox unit, metabolising potentially poisonous ingested substances. That includes drugs we consume for medical purposes. Metabolites – the products of metabolism – can themselves be bioactive. “It’s often not the drug itself, but one of its metabolites, that is responsible for a drug-induced toxicity,” Peltz said. All too often, drugs showing promise in preclinical animal assessments fail in human trials due to unforeseen safety problems, said Peltz. Another big problem is those unanticipated interactions between a new drug a person takes and any other drugs that person may already be taking. The drug tested in the study, clemizole, is an old antihistamine widely prescribed in the 1960s but left on the shelf when newer drugs came along. It has been resurrected since being shown to impede HCV replication. The new study advances clemizole’s prospects for development, because what the drug appears to do in human liver tissue is just what the doctor ordered. •

www.hep.org.au

Abridged from scopeblog.stanford.edu (31 Oct 2012) http://tinyurl.com/a7udclx

feature Q&A: Can men with hep B who are on interferon or oral antiviral treatment father a child?

Currently in Australia there several options for treating hep B: Lamivudine (Zeffix), Adefovir (Hepsera), Entecavir (Baraclude), Tenofovir (Viread) and less commonly, Pegylated Interferon (Pegasys). With none of these agents is it stated that a man must not father children while on therapy. Little or no information on their effect on fertility is available – and when it is, it’s often from animal studies. So for some of the agents (e.g. Pegylated Interferon) it’s recommended that men use contraception with their partners but no specific risk has been identified. Note: this is in stark contrast to ribavirin; while taking this drug, men and their partners must use two effective forms of contraception and it has been shown to cause abnormalities in sperm. For more info, call the Hepatitis Helpline on 1300 437 222 (local call costs from landlines)

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

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

Hep Review magazine

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

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

Edition 79

March 2013

feature Walking and talking keep the kilograms away One way people can lessen the impact of their hepatitis C is to stay fit and healthy. This article by Sarah Berry describes how you can seek help to reach and keep your goals.

wo years ago, small business owner Ian Corbridge weighed 97 kilograms. Within 12 months, the 55-year-old lost 22 kilograms aided by lots of walking and a public health information line aimed at helping people lose weight.

After a month of procrastinating, and at the urging of his wife, he signed up for the six-month program. In the first phone call to his personal coach, he discussed his lifestyle, the sort of exercise he enjoyed, and made a provisional plan for losing weight. By his first review call, three weeks later, he had lost seven kilograms and seven centimetres around his waist.

Image: hopefuldz9er, via Flickr

The free NSW government-funded Get Healthy program [see page 54] has been trialled for two years. More than 18,000 people signed up and an evaluation by the University of Sydney found participants lost, on average, four kilograms and five centimetres from their waists. More than that, participants were able to keep weight off, even six months after completing the program.

regularly stop off at the bakery for a snack to supplement his home-made work lunches.

The scheme, set up to target rural and remote areas of NSW, offers nutritional and exercise advice to overweight people over the course of 10 phone calls in six months. “Trained exercise physiologists, who also have nutrition training, provide information and coaching [to participants],’’ said an evaluator, Professor Chris Rissel from the University of Sydney’s School of Public Health. ‘’The results are meaningful clinically. They are keeping the weight off in the longer term.’’ Two years ago, Mr Corbridge saw a TV advertisement for Get Healthy. It showed a man walking and progressively becoming older and more overweight. ‘’It made a real impact on me,’’ he said. ‘’It was similar to me and a lot of other people I know … I [had become] overweight, didn’t exercise and had a bad lifestyle, eating all the wrong things.’’ Despite giving up alcohol in 2008, he had substituted sugary soft drinks for beer and would

“You’ve got to want to do it yourself,’’ he said. ‘’From day one, I gave up all junk food - fast food and soft drinks. And my wife and I started to walk together.’’ Another six months and eight phone calls later, he lost 22 kilograms. “I found the ongoing encouragement made the difference,’’ he said. Mr Corbridge who eats well but has the odd bit of chocolate has maintained his weight and health. He completed a 100km walk earlier this year and climbed Mount Kilimanjaro with his wife, something he said was a beautiful bonding experience and previously inconceivable. “Two years ago, there’s no way I could have done it,’’ he said. ‘’Two years later, I’m fit and healthy. It worked. It changed me.’’ By Sarah Berry, Life & Style reporter, Sydney Morning Herald. NB: Ian Corbridge’s story is not hep C related, aside from providing an example of overall healthy living. •

www.hep.org.au

Abridged from smh.com.au (1 Dec 2012) http:// tinyurl.com/afufkmd

feature

Sofosbuvir and daclatasvir shine A 12-week, once-daily regimen of sofosbuvir and daclatasvir, without interferon or ribavirin, produced cure rates for treatment-naive people in the 90 to 100% range, regardless of genotype or IL28B, reports the European Liver Patients Association.

12-week, once-daily regimen of sofosbuvir and daclatasvir, without interferon or ribavirin, produced sustained virological response rates for treatment-naive people in the 90-100% range, and appeared effective regardless of HCV subtype, IL28B host gene pattern or use of ribavirin, according to a late-breaker presentation at the 63rd Annual Meeting of the American Association for the Study of Liver Diseases (AASLD). Many patients and providers are awaiting alloral therapy without pegylated interferon and its difficult side-effects, and without ribavirin, which causes anaemia.

Sofosbuvir plus daclatasvir – with or without ribavirin – achieved SVR in more than 93% of participants with genotype 1, 2 or 3 Dr Mark Sulkowski, from Johns Hopkins Medical School, and colleagues tested various all-oral combinations of sofosbuvir plus daclatasvir, with or without ribavirin, in an open-label phase 2a trial. Because this was one of the earlier ribavirin-free regimens to be evaluated, researchers started with easier-to-treat patient populations and moved on to more challenging groups as they saw promising results. All study participants to date have been treatment-naive, a group with better prospects for a cure than non-responders to prior interferon-based therapy. The first stage of the study looked at people with easier-to-treat genotypes 2 or 3. The second stage enrolled people with harder-to-treat genotype 1, about 75% of whom had the most difficult subtype 1a. The study enrolled about 170 total participants in eight study arms. The median age was approximately 54 years.

Looking first at the genotype 2/3 participants, sustained virological response rates at weeks 4, 12, and 24 post-treatment (SVR4, SVR12 and SVR24, respectively) ranged from 88 to 100%. Turning to the genotype 1 participants, among genotype 1 participants treated for 12 weeks, SVR4 and SVR12 rates were 100% in all three regimen arms. All participants went on to achieve SVR24. The genotype 1 participants treated for 24 weeks were still undergoing follow-up. However, amongst the 68 participants who had reached post-treatment week 12, all achieved SVR12. Sofosbuvir and daclatasvir were generally safe and well tolerated. The most common side-effects overall were fatigue, headache and nausea, with no clear patterns across treatment arms. Moderate-to-severe adverse events occurred somewhat more often in the 24-week lead-in arm and the arm receiving ribavirin for 24 weeks, but numbers were too small to draw definitive conclusions. The researchers concluded that sofosbuvir plus daclatasvir, with or without ribavirin, achieved SVR in more than 93% of participants with genotype 1, 2 or 3. They added that virological response “did not differ according to IL28B genotype, viral subtype or the administration of ribavirin.” It remains to be seen how well sofosbuvir plus daclatasvir will work for prior null responders to interferon. Various other direct-acting HCV drugs under study looked good in treatment-naive patients but have not performed as well in this more difficult-to-treat group. Notwithstanding company decisions about which investigational agents to test together, once individual drugs are approved and marketed, clinicians and patients will be able to mix and match them. •

Abridged from elpa-info.org (21 Nov 2012) http://tinyurl.com/aleubta

Hep Review magazine

Edition 79

March 2013

feature

More of Canada gets funded Telaprevir The Canadian provinces of Alberta and New Brunswick are now funding telaprevir tablets in combination with pegylated-interferon and ribavirin for people with genotype 1 chronic hepatitis C. ertex Pharmaceuticals announced today that the provinces of Alberta and New Brunswick are now funding Incivek (telaprevir) tablets in combination with pegylated-interferon and ribavirin for residents with genotype 1 chronic hepatitis C. The Alberta Health decision comes following an evaluation by the Alberta Provincial Drugs and Therapeutic Committee. Incivek funding in Alberta and New Brunswick includes patients who are being treated for the first time, as well as those who were treated previously, but did not achieve a sustained virologic response (SVR, or virologic cure), including null responders. Null responders, or those who do not respond to initial treatment, typically have the most difficult time achieving a cure. “In clinical studies, Incivek combination therapy showed the ability to cure nearly four out of five people with genotype-1 hepatitis C who were being treated for the disease for the first time and many were eligible to complete all treatment in 24 weeks, marking a fundamental shift from how the disease was previously treated,” said Dr Robert Myers, Associate Professor and Director of the Viral Hepatitis Clinic at the University of Calgary and an Incivek investigator. Incivek is now funded in seven provinces and territories, including Alberta, British Columbia, Saskatchewan, Quebec, New Brunswick,

www.hep.org.au

Nova Scotia and the Yukon. It is also currently accessible to Canadians through most private health insurers. At the federal level, the NonInsured Health Benefits (NIHB) for First Nations and Inuit has listed Incivek. Vertex continues to work with remaining provincial governments to make Incivek accessible to people with hepatitis C, including those in Ontario, where the greatest number of people with the virus reside. The hepatitis C virus is the highest-ranked infectious disease in terms of disease burden in Ontario, including years of life lost due to premature mortality. “Direct-acting antiviral agents are an important advancement in the treatment of hepatitis C, but to make a significant impact they need to be accessible to all patients, regardless of where they live, their financial status or disease severity,” said Morris Sherman, Chair of the Canadian Liver Foundation (CLF). “The CLF commends Alberta and New Brunswick for recognizing the needs of people with hepatitis C and providing access to this effective treatment option. We urge all remaining provinces to fund all new hepatitis C treatment options as quickly as possible.” •

Abridged from financialpost.com (15 Nov 2012) http://tinyurl.com/csm5q8o In Australia we are still awaiting PBS listing – see pages 8, 23, 24 and 25.

Image: adam79, via Flickr

feature

c me Campaign says Treat Us Better The Treat Us Well campaign has gained significant traction in the health sector and with key opinion leaders, reports David Pieper.

Twitter

espite all the hard work by our 11 C me Community Advocates from all over NSW – and a range of other people and organisations – the Federal Government has not yet agreed to fund new hep C treatment drugs, boceprevir and telaprevir on the PBS. Hepatitis NSW is now ramping up the treatments campaign to keep the issue in the media with a view to achieving listing before 1 April 2013. The next part of the campaign has three new elements:

Hepatitis Australia is tweeting a series tweets over summer to keep the issue alive and ensure the urgency of telaprevir and boceprevir is made clear to policy makers. Governments monitor the twitter feed closely to gauge the mood of the public so use of this form of social media is a vital campaign element. Please follow Hepatitis Australia @HepAus on twitter and retweet their tweets. This will help the message reach the widest possible audience and encouraging

Left, Nell Beveridge and Jill Hirt, local campaigners. Right, Jacob George and Stuart Loveday. Images by Carlos Furtado, courtesy of The Parramatta Sun

Amending the campaign name We are changing the campaign name to Treat Us Better. The government didn’t fund the new treatments – we haven’t been treated well and we deserve to be treated better! A forum in Western Sydney Held on 10th December, the forum was successful in drawing attention to the fact that the Commonwealth Government has not yet listed the drugs telaprevir and boceprevir on the PBS to be publicly subsidised. The forum attracted local media attention, particularly in the Western Sydney electorates (marginal and closely monitored by Government and opposition). Our newest C me Community Advocate for Nepean Blue Mountains, Nell Beveridge, was interviewed along with Professor Jacob George and Hepatitis NSW CEO Stuart Loveday. The forum was “picked up” in radio station WSFM broadcast news grabs, local newspaper The Parramatta Sun and national newspaper, The Australian.

decision makers to take action. In addition to these three new elements, our existing campaign elements will be ramped up with a renewed sense of urgency: Emails to MPs and online petition A petition with over 1000 names was delivered to Health Minister Tanya Plibersek. Over 380 emails have been sent to Local MPs. If you haven’t yet signed the petition or sent an email to your MP, please visit www.hep.org.au/c-me and use the online template to do it now. If you have, please send it to everyone in your online contact list and encourage them sign up and send it. It is important we keep the pressure up until April.

Meetings with MPs and their advisors We’ve had 16 meetings with key NSW based Federal MPs (or their advisors) during 2012. More meeting are planned over the summer Parliamentary Recess. Keep checking under your Local Health District on www.hep.org.au/c-me to see what meetings have happened in your area.

•

David Pieper, Hepatitis NSW

Hep Review magazine

Edition 79

March 2013

opinion

Hepatitis NSW Campaigns This is a new column, which will be a regular feature of Hep Review. We want to provide a short update on the campaigns which Hepatitis NSW is engaged in and, where possible, on the ways that you may be able to get involved. In addition to our ongoing work to have telaprevir and boceprevir listed on the PBS (fingers crossed the Federal Government has done the right thing by the time you read this), Hepatitis NSW is looking to do further work around prisons and juvenile justice facilities. Basically, we will be advocating for the NSW Government to fully implement the Hepatitis C Prevention, Treatment and Care: Guidelines for Australian Custodial Settings, released in July 2008, and the Consensus Statement: Addressing Hepatitis C in Australian Custodial Settings, released by Hepatitis Australia, and co-signed by Hepatitis NSW, in June 2011.

Hepatitis NSW is looking to do further work around prisons and juvenile justice facilities Obviously, given the massive benefits involved in terms of reduced transmission of hepatitis C virus (HCV) and other blood borne viruses (BBVs), the obvious need in this area is the establishment of prison needle and syringe exchange (PNSE) throughout NSW correctional centres. We are keenly interested in and encouraged by developments in the ACT, where the re-elected Labor Government under Chief Minister Katy Gallagher, and the Greens Corrections Minister Shane Rattenbury, have committed to introduce a PNSE at the Alexander Maconochie Centre. When this PNSE commences, we will be looking to draw lessons from the ACT experience, including how we can secure PNSEs across NSW and how they should operate. But this doesn’t mean there aren’t other actions which can and should be taken in NSW prisons and juvenile justice facilities. We will advocate to ensure there is strong and consistent harm

www.hep.org.au

reduction in correctional facilities, including safe tattooing and body piercing practices. Fincol cleaning solution availability, while in place, also requires continuous monitoring and improvement. In addition, both prisoner and prison workforce education are also essential to minimise transmission and reduce discrimination against those who are living with chronic hepatitis C. As part of this campaign we will engage with

We are planning to advocate – in 2013 – for the inclusion of best practice HCV and other BBV education in the (high school) National Health and Physical Education Curriculum Justice Health to ensure the best possible testing and treatment for HCV and other BBVs for prisoners, including throughcare for people reentering the community so that they can complete their treatment. To keep up with this campaign, we will post regular updates through our twitter account: @HepatitisNSW Finally, just a quick heads up on another campaign that we are planning for in 2013 – to advocate for the inclusion of best practice HCV and other BBV education in the (high school) National Health and Physical Education Curriculum. At this stage we expect the draft curriculum be released for consultation in the first half of 2013 – hopefully we will have more news to share about that in our next edition of Hep Review. •

Alastair Lawrie, Policy and Media Officer, Hepatitis NSW

opinion

Australia lags behind in the battle against hep C, liver disease and liver cancer Australia is now officially one of the last developed countries in the world to gain access to important new hepatitis C therapies – placing us behind Slovakia and Ireland.

he Government decision not to fast-track new treatments (boceprevir and telaprevir) for listing on the Pharmaceutical Benefits Scheme (PBS) in October 2012 flies in the face of the Third National Hepatitis C Strategy. The Strategy, which has been endorsed by all of Australia’s Health Ministers, aims to reduce the morbidity and mortality caused by hepatitis C infection, including liver disease, deaths from liver cancer and liver transplants. Deaths from hepatitis-related liver cancer are growing at the same pace as deaths from melanoma and are likely to treble by 2030. Hepatitis C has already overtaken HIV/AIDS as Australia’s number one viral cause of death. Hepatitis C is the number one reason for liver transplant in Australia. “Hepatitis Australia is shocked by the Government’s decision not to fast-track the Pharmaceutical Benefits Scheme listing of the first new hepatitis C treatments in a decade: boceprevir and telaprevir. This is despite the Pharmaceutical Benefits Advisory Committee’s (PBAC) positive recommendation of both treatments in July,” said Helen Tyrrell, Hepatitis Australia Chief Executive Officer. “These new treatments would offer many Australians living with hepatitis C the chance to rid themselves of the virus and be cured. It’s a particularly difficult decision to accept when these treatments, the first new advances in a decade, have been available in many countries of the developed world for over a year.” Chronic hepatitis C is a major public health burden affecting over 220,000 Australians. Approximately 11,000 new cases of chronic viral hepatitis C are diagnosed annually and more and more people are dying from severe liver disease and liver cancer each year. “There are people with hepatitis C who need these new treatments without delay in order to avoid developing severe liver disease or liver cancer.

We appreciate cost must be considered by Government at this time; however, for every one dollar spent on treating hepatitis C in Australia, four more dollars are currently spent on the consequences of not treating, or curing people with hepatitis C.” “The investment required is similar to the amount already provided by the Government for the Bowel Cancer Screening Program. The Government should view the investment in hepatitis C treatment as a cancer prevention program as it will reduce the rapidly increasing incidence of

“for every one dollar spent on treating hepatitis C in Australia, four more dollars are currently spent on the consequences of not treating”

liver cancer caused by long standing hepatitis C infection,” said Helen Tyrrell. The Boston Consulting Group’s analysis of the economic impact of hepatitis C in Australia revealed that the use of the new therapies for hepatitis C would prevent around 2400 cases of liver cancer and over 2200 premature deaths and avert the need for over 800 liver transplants. Boceprevir and telaprevir share the Prix Galien Award (equivalent to the Nobel peace prize in health) for best pharmaceutical agent in both the USA and UK. This is an internationally recognised award judged by an independent expert panel and is considered the highest accolade for pharmaceutical research and development. Hepatitis Australia is asking the government to end the uncertainty for people waiting for these medicines and urgently fast track their listing on the PBS. •

Abridged from vision6.com.au (1 Nov 2012) http://tinyurl.com/a3fhfmb

Hep Review magazine

Edition 79

March 2013

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

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

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

Live Well recruiting Hepatitis NSW has launched a new project for people in the Sydney region living with hep C. Our Live Well program’s goal is to help people achieve better health outcomes through sharing information on diet, exercise, alcohol and other drugs ,mental health, treatment and navigating the health care system. We welcome anyone who is living with hep C and is looking for ways to improve their health and well-being. Our group workshops are free, confidential and suitable for people’s needs. We have also invited a number of experts in diet, exercise, alcohol and other drugs, mental health and treatment to be guest speakers. •

Duration: One weeknight each week for six weeks.

•

Who: You and other people with hep C

•

Where: Surry Hills, Sydney (convenient for any transport links)

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

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

Interested? Starting 7 February 2013 12.30 - 2.30 pm Wyong Central, 38A Pacific Hwy, Wyong 26

www.hep.org.au Image by Leonard John Matthews via www.flickr.com Unless otherwise stated, people in our images are not connected to hep C.

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

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Canadian doctor champions novel way to FIght liver cancer Canadians with advanced liver cancer may have a fighting chance thanks to a surgeon, a medical breakthrough and a chance trip to Miami.

r Roberto Hernandez-Alejandro never expected a eureka moment when he went to Florida to attend a medical conference, but there it was: German and Argentinian doctors describing a novel way of removing cancer from the liver. What he heard seemed implausible: surgeons used an unheard-of technique that helped the liver re-generate healthy tissue many times faster than after conventional surgery. With conventional surgery, doctors cut out cancer from the right side of the liver, then wait to remove it from the left side until there is enough regrowth to give the patient a better chance of avoiding liver failure and death. The wait was typically 14 to 16 weeks – a time in which the cancer might spread again. The new surgery allows doctors to reduce that wait time to one week using a method that Hernandez-Alejandro says is remarkable – a Canadian first that he has used five times already to great effect.

“The growth of the liver is spectacular,” he said. “The short wait leaves remaining cancer little time to spread. The result should be that more people survive or at least have a better quality of life,” he said. News of his success has left him in demand at other Canadian hospitals – he already has scheduled visits to facilities in Edmonton, Calgary, Montreal, Ottawa, Halifax and Hamilton. And his work was praised by hospital brass. “Dr Hernandez-Alejandro’s commitment to lead on this advanced procedure in Canada reflects the spirit of innovation (here) and demonstrates that every day, whether through the research we do or the pioneering efforts of our medical team, we continue to improve outcomes for the patients we serve,” said Bonnie Adamson, president and CEO of London Health Sciences Centre (Ontario). •

Abridged from sunnewsnetwork.ca (21 Oct 2012) http://tinyurl.com/aytxn8m

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When surgeons remove cancer from the left side of the liver they also deliberately restrict the flow of blood to the right side – somehow that restriction

causes the left side to regenerate at phenomenal rates, recovering 70% to 80% in just seven days.

Hep Review magazine

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March 2013

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Injecting drugs: important issues and urgent responses required. People who inject drugs experience the highest level of stigma of all drug users, says CREIDU’s Trevor King.

eople who inject drugs (PWID) experience the highest level of stigma of all drug users. They often experience a wide range of co-occurring health and social problems but typically have limited access to the services they need.

needed. To inform change, leading researchers have developed a series of policy briefs that provide a review of the research evidence and “actionable messages” for policy or practice change. The briefs address issues such as improved medication regimes for hep C treatment; improving access to hep C treatment; increasing the low rate of hep B vaccination; reducing opioid overdose through naloxone distribution; and reducing individual and public harms by establishing supervised injecting facilities. The most recently developed briefs consider the issues confronted by PWID who are imprisoned. Dr Mark Stoove (Burnet Institute) reviews the evidence showing that about half of all prisoners in Australia have a history of drug injecting. They typically have poor general health, high rates of blood-borne viruses and poor access to services to keep them safe (such as needle and syringe programs) and to treat their conditions.

Image: Chris JL, via Flickr

Dr Stuart Kinner (University of Melbourne) reviews the evidence showing that release from prison is a particularly vulnerable time for people who have a history of drug injection. The risk of overdose death, recidivism and poor general health outcomes requires urgent attention. He argues for the commencement of opioid maintenance treatment in prison with seamless transition to community programs, and the provision of naloxone to reduce overdose deaths. He also identifies the lack of good quality research necessary to guide policy and practice improvement.

The NHMRC-funded Centre for Research Excellence into Injecting Drug Use (CREIDU) was established to improve the health of people who inject drugs by generating new knowledge and effectively translating this into policy and practice. CREIDU has identified a number of key areas where policy and practice change is urgently 28

www.hep.org.au

The policy brief series is available on the CREIDU website: http://creidu.edu.au/ •

For more information about CREIDU or suggestions on what injecting drug use issues require policy or practice responses please contact Trevor King at: trevork@burnet.edu.au CREIDU is a collaboration between the Burnet Institute, the National Drug and Alcohol Research Centre, the Kirby Institute, Turning Point Alcohol and Drug Centre, the National Drug Research Institute, the University of Queensland, the Australian National University, the University of Melbourne, ANEX, Harm Reduction Victoria and Hepatitis Victoria.

Gareth’s story: inside reFLections

y current home is a NSW correctional centre. It was a warm spring day in 2009 and I was sitting in the dock waiting for the jury to deliver its verdict. There it was. You go straight to jail, do not pass “Go” and do not collect $200. Soon after, I found myself at the Metropolitan Remand and Reception Centre.

my story

encourage people to stop smoking and treat any medical condition while the individuals are in our care. We ensure that each individual maintains close contact with family and friends and we try to accommodate a positive and friendly environment in that regard. Finally, we provide ample mental and physical activities and try to challenge each individual to achieve certain goals in their life.

I have recently read your latest edition of Hep Review and would like to challenge readers to a mental experiment. Let’s take a population of 10,000 individuals of mixed age and background. We’ll place them into strictly confined areas, offer very limited facilities for physical activities and very limited opportunities for mental stimulation. All participants are removed from their circle of friends and family and restricted to limited visits. In addition we provide a diet which in theory sounds well balanced and nutritious, but practically has very limited nutritious value as all food has been processed, frozen and reheated at least two to three times. No fresh vegetables or salad. We offer very little guidance or training on health issues. Finally we treat medical issues reactively, only respond to serious health problems and try to discourage people from seeking medical assistance.

This time we encourage them to exercise, we provide guidance and advice on proper exercise and diet. We make sure there are suitable areas for exercise such as use of sporting ovals at least once each day. We try to provide a healthy diet. We educate and encourage individuals to make healthy choices, eat brown bread and cut back on fats and sugar. Fresh fruits of the season, vegetables and salad are provided. Everything will depend on the season as we have to fit into a strict budget. Similar to some European countries our facility has an emphasis on rehabilitation. We encourage education and work activities. We prepare tailored plans for each individual. We keep detailed medical records and try to attend to medical issues pro-actively. We

Image: CarbonNYC, via Flickr

On the other side of the experiment, we take 10,000 individuals, again of mixed age and background. We house them in strictly confined areas but treat them as humans.

Which group of people will be healthier, more mentally and physically fit, more likely to integrate back into the normal world, less likely to commit crimes and, as such, less of a burden on society? I have no doubt most people would agree on group two! •

“Gareth”, a NSW prisoner

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March 2013

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Harm reduction in prisons The people most at risk from hep C in Australia are those in prisons, where hep C is many times more prevalent than in the general community, writes Adrian Rigg.

eople in NSW prisons have more than just their freedom restricted. They are also unable to access the same services and networks as the wider community, including health protection facilities such as needle exchanges, and safe tattooing and piercing practices. In addition to this, the risks from things such as fights, assaults and contact sports are greater because there is more chance that detainees who are exposed to blood contact may be infected with hep C. The people most at risk from hep C in Australia are those in prisons; up to 50% of prisoners have hep C, compared to 1% of the general community, says Hepatitis C Prevention, Treatment and Care: Guidelines for Australian Custodial Settings, from the Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis. This is a huge public health issue; the effects of infection control in prisons spread far beyond the prison environment. The prison population is constantly changing, with detainees returning to their families and communities, where their health affects the health of those around them, both directly and indirectly. At the same time, prisons do provide an opportunity for some of the most marginalised people to access health information and treatment for issues such as injecting drug use and hep C. Infection control strategies in prisons Custodial officers in NSW are given training in communicable diseases, safe searching and cleaning up of blood spills as part of their initial training, with opportunities for updates and refreshers on regular staff training days. This training focuses primarily on how custodial officers can keep themselves safe and avoid acquiring blood-borne viruses. Ongoing training can be difficult as resources are limited, and any staff member in training must be covered for the time they are away from the prison. To address the fact that this training may not stay uppermost in Custodial Officers’ minds throughout their careers, Corrective Services are trying to make it easier for custodial officers to access ongoing training.

www.hep.org.au

“We are currently working on a proposal to develop an online learning package which will make training more accessible,” says Sue HenryEdwards, Principal Adviser Alcohol and Other Drugs and Health Promotion for Corrective Services NSW. An important aspect of infection control is for prison authorities and prison staff to feel strongly about the community benefits of protecting detainees from blood-borne viruses. If prison is seen as a place for rehabilitation and an opportunity to give people the chance to improve their future lives within the community, then health issues will be considered important. A good understanding of how someone’s actions in prison affect their long-term health, and the health of those around them after release, is essential to infection control within prisons. John Didlick, Executive Officer of the ACT Hepatitis Resource Centre, and his staff have some access to detainees and custodial officers at the Alexander Maconochie Centre. In some respects, this is one of the most progressivelyoperated prisons – one that has the potential to lead the way for prisons around Australia in the area of harm reduction. They are able to provide training about blood-borne viruses and infection control to newly recruited custodial officers as part of their first training. They are also able to speak with detainees about infection control and distribute educational resources; however, as there are many segregated populations within the prison, it can be difficult to consistently provide and reinforce this information. An important first message they give is to avoid injecting, tattooing, sharing razors and any other risky behaviours; from there, they go on to tell people how to minimise the risk of infection if they do engage in these activities. Peer Supporters Program for detainees At Lithgow Correctional Centre, a maximum security prison in NSW, some carefully selected and approved detainees are given training to be peer supporters. One of the aims of the program is to help detainees take responsibility for their own

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health, particularly in relation to drug use and prevention of blood-borne viruses. The peer supporters are trained in communication, helping others in a crisis and adult learning, and are educated about drugs and infection transmission. Peer support contact with other detainees is mostly informal, although prison staff

The people most at risk from hep C in Australia are those in prisons, where hep C is six times more prevalent than in the general community may put someone in touch with a peer supporter to help with advice or a crisis. The long-term plan is for the benefits to spread throughout the prison system. “Trained peer supporters from Lithgow will eventually work through the classification system and be able to move to medium and minimum security centres where they can continue to be peer supporters,” says Sue Henry-Edwards. Drug use in prison Sharing injecting equipment is the easiest way for hep C to spread in prisons. In the absence of needle exchanges, Fincol, a hospital grade disinfectant, is provided to detainees in NSW prisons. It has been found to be effective against HIV, hep B and a surrogate virus for hep C. Providing Fincol does not eliminate the risk of transmission, as no cleaning method is 100 per cent effective; this is especially true in prisons, where people may not have the time and space

to follow cleaning instructions thoroughly. It is also only as effective as access allows; dispensers must be easy to obtain and constantly replenished to be useful. “It is the view of prison management that dispensers be replenished daily. Unfortunately, demand often outstrips supply and some detainees who inject are unable to clean injecting equipment prior to use,” says John Didlick of his experiences with the ACT prison system. “Independent sources and feedback from detainees show that access to this important harm reduction strategy is inconsistent.”

Hep Review magazine

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March 2013

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Image: sacbee, via Flickr

The recent ACT election demonstrated that governments need not be afraid of a public backlash against needle exchanges in prisons. The Labor government had announced its intention to trial a needle exchange in the ACT prison, and the Liberal Party had opposed it. While this was not the only election issue, Labor won the election and will introduce the program in 2013 at the Alexander Maconochie Centre. While the program has limits and might take some time to become established, it will be a good way to show that a needle exchange program can work, and may be built on and more widely adopted in future. There is still some way to go to allay concerns of prison authorities and staff about the potential use of needles as weapons; risk that exists with the current arrangements. Experiences in overseas prisons show that the introduction of a needle exchange does not make the prison environment more dangerous for staff and detainees, nor increase injecting drug use. The ACT model is a one-for-one exchange program, so the number of needles in circulation in the prison would not increase. Methadone and buprenorphine treatment Detainees in NSW have access to opioid substitution treatment; those already on methadone or buprenorphine will continue, and

www.hep.org.au

some people may be able to commence treatment in prison. On release, people will need to find a program so that they can continue treatment, which can be difficult for people who may not have found stability in the community. If they can stay on treatment, the likelihood of re-incarceration is lower; this is good for individuals as well as the justice system, and the cost of providing treatment is much lower than the cost of keeping a person in prison. Good coordination between prison and community programs is essential to make continuation of treatment easier. Hep C treatment in prison Hep C treatment is available to detainees of NSW prisons. If people can be successfully treated in prison, it reduces the risk of transmission within the prison as well as in the community. Because treatment can be arduous, and good support is needed, treatment is usually given to those people with a good chance of completing treatment and clearing hep C. As in the general community, this depends on the virus genotype, general health and willingness to undertake the full course of treatment. Access to treatment is limited by the availability of health care staff; this must be regular and ongoing as hep C treatment requires scheduled medication and testing. As stated in Hepatitis Australiaâ&#x20AC;&#x2122;s Consensus Statement: Addressing Hepatitis C in Australian Custodial Settings, prison health services prefer

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For some people, time in prison can be a good opportunity to take on hep C treatment, as appointments are easily kept, medications more readily accessible and support is onhand when needed.

to provide treatment only when it can be completed before release; however, continuation of treatment is possible where there is good coordination between prison and community health services. For some people, time in prison can be a good opportunity to take on hep C treatment, as appointments are easily kept, medications more readily accessible and support is on-hand when needed. Other people may feel that prison is not somewhere they want to take on treatment that could make them unwell and potentially vulnerable, physically and emotionally. An important part of treatment is education about the possibility of re-infection, as remaining in prison after completing treatment means they have the same risk of infection as anyone else in prison. “Justice Health and Corrective Services NSW have each made some good progress in helping address the needs of prisoners with hep C,” said Stuart Loveday, CEO of Hepatitis NSW. “But we have research findings, agreed national guidelines and Hepatitis Australia’s Consensus Statement providing both ample evidence for the need and also strategies to better address hep C in prisons. We have a long way to go,” he said. “2013 is the year Hepatitis NSW will start to work far more closely with politicians and our partners to advocate for and support improved hepatitis prevention, treatment and throughcare services in NSW correctional settings,” said Stuart Loveday.

Poster d ownload Full set fr of 32 po om http://www .hep.org sters ava .a ilable vi a the He u/documents/H RP16-8 patitis H 30KB.p elpline df

Other people may feel that prison is not somewhere they want to take on treatment that could make them unwell and potentially vulnerable, physically and emotionally.

Resources are needed Addressing hep C in prisons is an essential part of reducing hep C incidence in Australia. Allocating resources to harm reduction in prisons would benefit public health, as well as reduce long-term costs in public health care. Funding for research and trials would help improve harm reduction strategies for detainees and prison workers, and their families and communities.

•

Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com See page 24 for information about our prisons advocacy campaigns. HNSW

Hep Review magazine

Edition 79

March 2013

Sites

www.hep.org.au

The veins here are even more fragile than those of the hands. They can be more painful too.

Feet/ankles

Injecting into small veins is risky: the chances of the vein splitting, or not being able to take the volume of liquid you are injecting, are high .

Small veins Part 2

l SITES: small veins l

These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.

Safer Injecting Procedures

Hep Review magazine

Edition 79

March 2013

The Hep Review harm reduction poster, March 2013 (#34). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au

thinking about injecting into your feet it is time to start thinking about giving up injecting. o o o

If you start injecting into your feet/ ankles, it won't be long before you are spending days in pain and unable to put shoes on. If you are

Slow blood flow also increases the risk of infection. Because feet are warm and sweaty, the skin has high levels of bacteria. So it is important to wash them carefully, with soap and hot water, before attempting to inject.

can reduce this risk by injecting slowly.

Because the veins are fragile and because the blood flows slowly, injections into the feet often miss, with the fluid escaping around the needle during the injection into the tissue around the vein. You

my story

Image: MixedUpMedia/Mari W. - tryin’ to catch up, via Flickr

BJ’s story: A fortunate life

grew up in the western suburbs of Melbourne in the 1970s. It was rare for anyone to not use drugs. I got serious about them by the age of 17, about the same time that I got into my first long term relationship and not long before my first child was born. My partner and I both loved speed and the fast life. Despite a brief hiatus when the kids were born, I would hate to think of the amount of money we spent on it. When we separated, she ran interstate with my kids and I didn’t have much contact with them. Add a serious industrial accident to that, and I really fell apart. But when I got the feel of the steel and some speed in my veins, I felt bloody magnificent. So, for more years than I care to dwell on, I was a rogue idiot, shooting speed and staying up all night talking shite about how great my life was.

www.hep.org.au

There were a few things that made me stop. One was seeing my ex again, seeing what the drugs had done to her, and I guess, getting a reflection of myself. Another was seeing my kids after so long and realising that I had to be a better man for their sakes. Then there was my grandmother. She had taken me in and it would have broken her heart to know what I was doing to myself. I guess I had an epiphany of sorts, realised what an idiot I was and just stopped. I have never looked back. The lifestyle of down and dirty behind me, I was having some repair work done on my body from my industrial accident, when there was a blood splash during surgery. As a result of this I was tested, and hep C came up a winner.

my story My warm-hearted surgeon came in, saw me and said, “You have tested positive for hepatitis, and you will have no feeling down one side of your arm because I accidentally cut a nerve during surgery, but you’ll be okay.” Then he just walked away. About a year later I saw a gastroenterologist. Interferon monotherapy treatment was discussed. He was a blunt sort of bloke and said that he didn’t think I could take the treatment at the time, that my lifestyle wouldn’t support it. I wasn’t using any more, but I was drinking and partying, and had a lot of stress going on. He suggested I wait, so I did just that. Over the years I looked into treatment two other times. Once I was advised that I wasn’t eligible because my ALT readings weren’t high enough, and another time I was told that I had to have a liver biopsy before having treatment. I read the literature on that, and when I got to the bit where it said, “take out a small piece of the liver” I thought, nah, bugger that! I lived in denial for a while. I still thought of treatment from time to time but always thought I hadn’t the time to do it, and I didn’t think my lifestyle would support it working away from home up to 35 days in a row, with no support. But I was playing with my ten-year-old daughter one day and I just suddenly thought, “I have to do my best to stay around for this little one.” My wife and I are “older” parents, she is over 50 and I’m in my late 40s. So, when I was working 12-hour days and nights in mining, I decided that I had to find the time and the lifestyle for treatment. The nurses at the clinic where I was treated were good, but they told me to take six months off work. Who can do that? So, thinking that I am indestructible, I dived into the treatment head first, with no sick leave and no chance of a break if things went belly up. I started the new financial year in 2008 sticking needles in myself again, only this time to try and repair the damage. The mining life is a hard, unforgiving one and any visible handicap is seen as a weakness. All of the big sites are full of cliques depending on where you come from and what you do, and if you don’t belong to one, as I don’t, it is easy to be ostracised. So I did my treatment away from those I love, in a hole in the ground, with nobody around who knew what I was doing.

I was lucky that for most of the day, I had minimal interaction with others. There was just a 100 tonne bulldozer and me ripping up a pit while listening to the ABC talkback radio. Whether you are on days or nights, you are pretty much busy from 4am till 7pm so there’s not much time off the job. However, I did have time to think about what was happening to me, and there was a lot. My teeth hummed, I got ear infections, toothaches I thought were going to send me insane, mouth abscesses, and flu for the first time in my life. I was wiped out.

I was playing with my ten-year-old daughter one day and I just suddenly thought, “I have to do my best to stay around for this little one” ... I decided that I had to find the time and the lifestyle for treatment. I found a new word: fatigue. I did not feel good. Towards the end of treatment, when I thought I couldn’t take any more, a mate of mine whose wife had chronic fatigue, put me on to an amino acid called musashi creatine recovery stack. It only cost about $30 for a month’s supply and it made a huge difference. I was still sick, but I got through my days a lot better. I was working in a small crew of blokes mainly in their early 20s, and despite them not knowing what was going on, I did find some support there. I don’t know if it’s because I was the “old bloke” or not, but the young fellas got real worried about me and thought I was dying of cancer or something. When my weight dropped from 86 kilos to 68 rather quickly, I remember them getting together and one of them saying, “Look mate, you need to see a doctor.” I told him, “Mate, I’m seeing one, and something is wiping out my white blood cells,” and he told me “well mate, see a better doctor, ‘cause your one’s no good.” As well as physical illness, I got the mental yips. I would get very emotional, I became my wife for a while, crying at songs or stories on the radio. I was lucky that nobody could see me because I could also get so angry that I was dangerous. There were times I felt abandoned because I was out working by myself, while my wife was enjoying the good life on the beach. I would break down

Hep Review magazine

Edition 79

March 2013

my story regularly, but I also had the strength of mind and my beautiful wife to remind me that it was just the side-effects of the treatment drugs, and that I would eventually be all right. I love my family, wife, kids, brothers, sisters, parents, the whole lot, and I thought about them often, and about my part in their lives during the bad times, that got me through. That, and knowing that I would be all right when the treatment stopped. I told myself it wasn’t permanent. Anybody who has had adversity in their lives will find it easier to get through, cause you already know when things are down, that they can only get better. My wife is the only non-medical person that knows I have hep C. I have never told any of my other family, and I don’t think that I want any of them to

know. It’s complicated, but I don’t want to let them down and I am a bit ashamed of the disease and how I got it. For my older kids, their mother was a drug user and I was a light they looked up to. I don’t want to shatter that. And I don’t want any of my kids to use drugs. I think that they look at me as a stronger person (still even with my many other weaknesses!) and it keeps them off drugs.

My wife is the only non-medical person that knows I have hep C. I have never told any of my other family, and I don’t think that I want any of them to know.

I think that a lot of the trouble with drugs is that people who use them don’t know that they are dependent. The drugs are often a crutch for other things that are wrong; so you live in denial. When I was on the gear, I would never have called myself “a junkie”. When I realised I was one, I stopped. I realised I’ve just got an addictive personality and I need to be careful. After my accident I took serious painkillers regularly for years, till I realised I was eating them as a matter of routine. Then I stopped them too. My body aches, I walk a bit funny in the colder times, but I’ve got used to it and I don’t dwell on it. However, that doesn’t stop me turning into a sook and grabbing aspirin when I have a toothache. I have not been part of the drug culture for many years now and when not at work, I live a good life, but whenever I go back home I see the bad side of it. Not that I would have used them, but I think safe injecting houses are one of the best things that I have ever heard of. I have picked up syringes in school playgrounds as well as on beaches, and I will call other drug users on this. I’d say the chances are that you are carrying a disease like mine, don’t leave things laying around for a child to get it too. You might say your drug use is a sickness, but you have to come to your own realisation to get off drugs or stay on them. I don’t think my disease has affected me that much in my life. Every now and again I feel my liver twinge a bit. I’ve been a bit yellow when I’ve misbehaved, but I’m rarely flat, sick, or weak. I’ve just got this thing that I don’t want inside of me. Image

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gle Ima

via Goo

www.hep.org.au

Image: rp_photo, via Flickr

my story

The only time that it’s a real issue is when I sometimes have gone back to Melbourne and got on the grog with my brothers. I don’t drink much now, maybe a light one, when I pull my boots off at the end of the day. After the treatment was over I was back feeling better than ever. Having been a rapid responder, I had very high hopes of a good result. I was at work at the start of five weeks away from my family again when I phoned the clinic for my results. Talk about floored. The virus was back. But hey, it only knocked me down the once. Already I have an appointment with the doctors to talk about other options and any advances in treatment in the 12 months since I began it. I was sick and tired for six months, would I do it again if I knew how sick I was going to be? Yes. That’s why I’m talking to the doctors again. If there’s a chance for a cure, I would be silly not to go for it.

I have had more tragedies, more highs and lows in my life than most people, and I am lucky that through it all, I know myself pretty well. I came from the low end of town and I lived with that mindset for a long time. Now I work hard for a good pay that helps me look after my wife and daughter and they live a great life in a house on the beach. Many years ago somebody gave me AB Facey’s A Fortunate Life to read, and I think, just like Bert Facey, I’ve had a fortunate life, and unlike a lot of my mates, I’m glad I’m still here to talk about it. •

BJ, Northern Territory. Abridged from Treatment, Life, Hep C & Me. Hepatitis Australia 2009.

Hep Review magazine

Edition 79

March 2013

feature

Alcohol quiz Most of us enjoy the odd drink, but do you really know what alcohol is doing to your body? Test your knowledge in the ABC’s Health IQ quiz. Or go to the ABC’s online quiz... http://tinyurl. com/awlhpmu

3. Regular alcohol consumption can increase a woman’s risk of breast cancer. How many standard drinks a day is the minimum needed to increase your risk? a) One

b) Four

c) Five

d) Six.

4. You get a hangover from drinking too much alcohol because:

1. Which of the following is a standard drink?

a) Alcohol is a diuretic, and dehydrates you

a) 200ml glass of wine

b) Your body produces toxic by-products when it metabolises alcohol

b) Middy or pot (285 ml) of full-strength beer c) 170ml glass of champagne

d) All of the above.

d) Schooner (425ml) of light beer. 2. Australian guidelines recommend men and women have no more than how many standard drinks per day? a) None

5. Which of the following is the best way cure a hangover after a big night out? a) Drink coffee

b) Sleep it off

c) Eat a big greasy meal

b) One

c) Two

c) Fermented alcoholic drinks already contain toxic molecules

d) Go for the ‘hair of the dog’ and have another drink.

d) Four.

•

Answers on page 54.

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

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

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

•

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

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

www.hep.org.au

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keyhole into our work

Aspirin can half liver cancer risk

•

Our C me project is lucky to have the involvement of Lila Pesa as a Community Advocate in the South Eastern Sydney Local Health District. Lila, originally from Eastern Europe, volunteered for the C me project wanting to give something back to the community. With first-hand experience of living with hep C, Lila is keen to make a difference in her area, especially for people of CALD background.

It looks like aspirin can help prevent liver cancer too, according to a new study in the latest issue of the Journal of the National Cancer Institute.

Information and resources

he study revealed that aspirin can reduce the risk of developing liver cancer or dying from chronic liver disease by approximately 50% even if only taken monthly. Researchers found that people who had taken aspirin at least once a month in the past year were 49% less likely to develop the most common form of liver cancer compared with people who did not take aspirin. Additionally, they were 50% less likely to die from chronic liver disease in the next ten years. The study consisted of 300,000 participants who were enrolled in the National Institutes of HealthAARP Diet and Health Study. Researchers gave them questionnaires to have them report on their use of aspirin and other NSAIDs over the previous 10 years. Their responses were then linked to databases that registered cancer cases and deaths during the following 10 years, showing that 250 people developed hepatocellular carcinoma (liver cancer) and 428 died from chronic liver disease during that time. “Aspirin, in particular, when used exclusively or with other non-aspirin NSAIDs showed a consistent protective effect related to both liver cancer incidence and chronic liver disease mortality, regardless of the frequency or exclusivity of use,” said Dr Vikrant Sahasrabuddhe, research team leader. “This is the first large-scale, population-based evidence for reduced risks of liver cancer incidence and liver disease mortality associated with the use of non-steroidal anti-inflammatory drugs,” Sahasrabuddhe wrote in the journal. •

continued from page 7.

Abridged from examiner.com (2 Dec 2012) http://www.examiner.com/article/aspirin-canlower-liver-cancer-risk-by-half

Transmission Magazine is a great tool for cross-cultural communication, targeting priority populations including Aboriginal and CALD peoples affected by hep C. The magazine has included graphic novel comics, drawn from two Ilbijerri Theatre Company productions: Chopped Liver and Body Armour. They aim to repackage general health promotion messages and communicate them to Aboriginal audiences. For many years, we have partnered with the Aboriginal Health & Medical Research Council, working with hep C health promotion within Aboriginal communities. In regards to information resources, this has involved our co-funding the print runs of Hep C and Us Mob booklet, and inclusion of an Aboriginal specific section within our website. Hepatitis B Although we have not yet secured any dedicated HBV funding, we strive to provide basic support and information on hep B, and partner with clinicians and other agencies in the development of key hep B health promotion resources. With the NSW Cancer Council, in 2013 we will jointly hold a NSW Hepatitis B Parliamentary Briefing to coincide with the release of NSW’s first hep B strategy, into which we provided considerable input. Client services Around 15% of our Helpline callers come from CALD communities; around 12% are from Aboriginal backgrounds. This is slightly above the prevalence rates for hep C in these communities. We acknowledge and pay our respects to Australians from those many different backgrounds, some of whom are more than proportionately affected by viral hepatitis. •

Rob Wisniewski, Hepatitis NSW

Hep Review magazine

Edition 79

March 2013

promotions

Albion Centre online hep training

C s i t i t a p he

E-learning, the computer and network-enabled transfer of skills and knowledge, is becoming an increasingly popular way of achieving work-based training, writes Katherine Coote.

lbion Education at the Albion Centre Surry Hills has implemented a new method of providing viral hepatitis training to health and community workers in NSW and elsewhere in Australia. Historically all Albion Education courses were delivered in a face-to-face format. Around four years ago Albion started investigating alternative ways to provide training, specifically online or e-learning.

five occasions, training a total of 79 participants. Participants have represented a range of health and community professions and have logged on in every state and territory, including urban, rural and remote settings.

mmy For the majority of the participants, the u’re not a du e know yocompleting w * course it is their first experience of online learning. However, almost all participants to date have been able to master the Moodle platform with little or no assistance.

a quick guide to

E-learning, the computer and network-enabled transfer of skills and knowledge, has been used in secondary and tertiary education settings for some years now. Albion Education selected Moodle (abbreviation for Modular Object-Oriented Dynamic Learning Environment) as the web platform to deliver its online courses. Moodle is a free-source (although a fee is required to host the program), low bandwidth, e-learning software platform. Courses were selected from the Education calendar to be adapted and trialled in the new e-learning format. One of the courses selected was the Hepatitis for Health Workers workshop, which became the Hepatitis for Health Workers online course. Hepatitis for Health Workers is a seven-week online training course which consists primarily of weekly reading and course activities such as quizzes, internet research and forum discussions. The average participation time required each week ranges from 1-3 hours, at a time that suits the schedule of the individual participant. The topics covered in the online course reflect the face-to-face course; however, the online reading format allows for embedded links to further reading and resources as well as audio and visual podcasts. This enables participants to explore topics more deeply that are of interest or relevance to them.

Participants contribute to forum discussions about designated topics which are moderated by a trainer with expertise in that topic. As well as encouraging learning through reflection, these discussions also enable networking among course participants through information and ideas sharing. Since its inception in 2010, the Hepatitis for Health Workers online course has been run on

www.hep.org.au

Course evaluations have been on the whole very positive and valuable in informing ongoing course development and enhancement. Recurrent themes appearing in course evaluations include: •

Convenience of online learning “I was able to fit it in with my work and home commitments and did not have to juggle being away from work and home.”

•

Depth of material and resources available “I found it enjoyable to navigate around the site and links, and spend more time on topics that interested me, or I didn’t quite understand at first.”

•

Learning value and enjoyment of forum discussions “Excellent, stimulating and invigorating forum discussion,” “Being able to read the comments of others and reflect before responding, worked well for me.”

Some participants have also said they would like to see more real-time interaction in the course so we are looking at ways to include this, such as scheduled live web chats with an expert on a course related topic. The introduction of online learning has been an exciting new development for Albion Education and we are looking forward to expanding the courses available. •

Katherine Coote, Clinical Psychologist / Health Educator, Albion Centre, a division of the Albion Centre Surry Hills, a facility of Prince of Wales Hospital, South Eastern Sydney LHD. If you would like to find out more about Albion Education on-line courses please phone 02 9332 9720, go to www.sesiahs.health.gov.au/ albionstcentre or email: albeducation@sesiahs. health.nsw.gov.au

feature

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Free online learning modules from ASHM and ThinkGP

if you have hep C, it’s best to avoid alcohol as much as possible

But if you do drink... ... it’s best to have less than the national guidelines suggest

ASHM has developed new online learning modules in conjunction with ThinkGP.

These guidelines say: No more thaN 2 staNdard driNks a day aNd Not more thaN 4 staNdard driNks iN oNe sittiNg

Standard drink IS:

s part of its commitment to support the primary healthcare workforce, ASHM has developed new online learning modules in conjunction with ThinkGP.

beer:

wine:

1 small glass (100 millilitres). a glass of wine served in a bar is usually bigger than 100 millilitres

1 1

(like sherry or port)

one sherry glass (60 millilitres)

1 nip (30 millilitres)

Managing Aboriginal and Torres Strait Islander patients with hepatitis B and hepatitis C provides insight into the cultural aspects that impact the detection and management of these viruses.

fortified wine: spirits:

These modules provide an overview of hep B, hep C and HIV. They discuss the role general practitioners and practice nurses can play in the identification and management of these blood-borne viruses.

low alcohol

1 small can of low-alcohol beer (2-3% alcohol) OR 2/3 of a can of standard beer OR 1 middy of standard beer OR 1 schooner of low-alcohol beer

Hepatitis C management – we can do more, discusses the management of the virus in the general practice setting.

Want to alternate your alcoholic drinks with something soft but still with a bit of bite?

Image via realfoods.co.uk

Tonic water with a squeeze of lemon

ThinkGP is a free education resource, available for Australian GPs, practice nurses and related health care providers. Go to this site to access the above modules: http://tinyurl.com/ckfcejy ASHM is a peak organisation of health professionals in Australia and New Zealand who work in HIV, viral hepatitis and sexually transmissible infections. ASHM draws on its experience and expertise to support the health workforce and to contribute to the sector, domestically and internationally. •

Also visit ASHM’s Online Training page for more information about ASHM courses: http://tinyurl.com/ axmd574

Soda water with a squeeze of lemon Tonic or soda diluted with fruit juice and bitters. Hep Review magazine

Edition 79

March 2013

hep chef

Roasted Eggplant with Feta This is so simple, the eggplants are cut in halves or quarters and baked till soft. Take them out of the oven and mash up a bit with a spoon, mix garlic, olive oil, pepper, with Feta and parsley and then spoon over the baked eggplants. Ingredients: 4 small eggplants Juice of one lemon juice 2-3 cloves of minced garlic 200 grams Feta cheese a small bunch of fresh parsley, chopped cracked pepper to season 1/4 cup extra virgin olive oil You can double the garlic, lemon juice and parsley and use it to marinate some thick slices of chicken breast, which you can bake for about 15 minutes with the eggplant, and also add some potato or sweet potato wedges that have been par boiled and drizzled with extra virgin olive oil into the oven. Serve with a simple salad or some steamed kale.

March Hep Chef: Michelle De Mari

Want to see your recipe here? It needs to be basically healthy (which is the basis for diet recommendations for people living with hep C). Simply send it in to us â&#x20AC;&#x201C; see address on page 67.

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

â&#x20AC;˘

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opinion

New hep B tools

We MUST avoid liver cancer blowout

A new set of innovative information resources have been designed at Liverpool Hospital.

set of innovative information resources designed to improve the treatment rates among Australia’s 170,000 people with hepatitis B and reduce the incidence of hep B-related liver cancer and liver failure is now available. The DVD and flipchart, partly funded by the global Advancing the Clinical Treatment of Hepatitis B Virus initiative, were developed by Dr Miriam Levy, the Head of Gastroenterology and Hepatology at Liverpool Hospital in Sydney. •

What happens if you have Hepatitis B? – a DVD for patients and carers explains hep B through stories about three people living with the virus.

•

Hepatitis B Bear and You – an illustrated flipchart designed as a patient teaching aid for health care workers simplifies the five typical stages of hep B infection.

“By increasing patient awareness of the different stages of the virus and the importance of proper management we hope to increase the number of patients who participate in regular monitoring, so they will get treatment when they need it,” said Dr Levy. The new resources have been endorsed by eight Australian health bodies and organisations including South Western Sydney Local Health District, the Australian Liver Association and the NSW Cancer Council. Copies of the resources are freely available across NSW from Hepatitis NSW. People can also request copies from Liverpool Hospital’s Gastroenterology Department by calling 8738 4074, or view it on the Liverpool Hospital Facebook page. The flip chart will be available in multiple languages and the DVD dubbed and subtitled in Vietnamese and Mandarin. •

Abridged from sswahs. nsw.gov.au (23 July 2012) http://tinyurl.com/ awmppoj

A “Letter to the editor” from the Medical Journal of Australia.

he Australian Institute of Health and Welfare (AIHW) recently released its report on cancer survival and prevalence in Australia from 1982 to 2010, incorporating incidence and mortality estimates for all malignancies reported to Australian cancer registries. Cancer is a leading cause of morbidity and mortality in Australia, accounting for about 20% of the total disease burden and 30% of deaths.

“no other cancer has had a larger increase in mortality” Liver cancer causes an increasing number of deaths in Australia every year, primarily related to the increasing prevalence of chronic viral hepatitis now estimated to affect around 400,000 people, or 2% of the population. Liver cancer survival remains among the lowest of all cancers, with only 16% of people still alive five years after diagnosis. By 2007, liver cancer had become the 11th most common cause of cancer death of Australians. The new AIHW report indicates that primary liver cancer is now the fastest increasing cause of cancer mortality in this country. Annual new cases of liver cancer recorded in Australian cancer registries almost tripled between 1982 and 2007 (from 1.8 to 5.2 cases per 100,000 population), and no other cancer has had a larger increase in mortality, with the number of Australians dying from liver cancer doubling during the same period. With most primary liver cancer attributable to chronic hep B or C, and increasing evidence of the efficacy of antiviral therapy in preventing cancer, it is a universally recognised public health priority to scale up access to these treatments. However, fewer than 3% of people living with viral hepatitis are receiving treatment, reflecting low levels of community and clinical awareness of this issue. Unless this is urgently addressed, we will see the fastest increasing cause of cancer death of Australians continue to accelerate. •

Abridged from Jennifer MacLachlan and Ben Cowie, Epidemiologists. Medical Journal of Australia, 05 Nov 2012. Letters, page 24.

Hep Review magazine Image via rachelsbears.co.uk

Edition 79

March 2013

feature

HELLO HEPATITIS HELPLINE What are these new interferon-free treatments and when will they be available? We’ve been getting a lot of calls on the Hepatitis Helpline recently about interferon-free treatments. People are excited about them and it’s no wonder why – most of the nasty side effects associated with hep C treatment are a result of interferon so a treatment regimen without it promises a much more pleasant experience. Add to this a shorter treatment time and higher chance of cure and you’ve got what some are calling the “holy grail” of hep C treatment. The direct acting antivirals boceprevir and telaprevir are not yet listed on the PBS (meaning they aren’t yet covered by Medicare). Standard combination treatment remains the only accessible treatment for most people in Australia. When the new drugs are listed they will provide “triple therapy” – boceprevir or telaprevir given with the standard combination treatment: weekly injections of pegylated interferon, and ribavirin pills, taken orally, twice a day. Even better than “triple therapy”, interferonfree treatment regimens, involving various combinations of oral drugs, have been tried in several clinics around the world and the results so far have been incredibly promising. Response rates have been excellent, with around 90% of patients reaching SVR, regardless of genotype. Even those who have had previous rounds of interferon-based treatments which have been unsuccessful, and those who have cirrhosis have seen positive results.

The first interferon-free trials in NSW have already started with more planned for roll out this year. The number of patients they take on each time is limited and they are often looking for very specific HCV factors such as history of past treatments, level of liver damage and certain types of coinfection. If you would like to hear about upcoming clinical trials keep in touch with your local liver clinic or check out this website: http:// clinicaltrials.gov/ It is estimated that the interferon-free treatments will be listed on the PBS and available for general use in 2-5 years time. By this time the most effective combination of oral drugs will be known and it’s possible that there may be different approaches to treat different genotypes and different levels of liver damage. Whichever way you look, it seems that interferonfree treatments are now close to being a reality and a good one at that. If you would like more information please contact the Hepatitis Helpline on 1800 803 990. •

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.

The news on side effects is also good, with a significantly smaller percentage of people on trials experiencing side effects when compared to those on standard combination therapy. Finally, the majority of trials have been based on only 12 weeks of treatment, meaning that even for those who experience side effects, the duration of these is much shorter.

“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. 46

www.hep.org.au

FERRAL. INFO. SUPPORT. RE CONFIDENTIAL

hepatitnise helpli

Please tell us what you think about Hep Review magazine below or go to http:// www.surveymonkey.com/s/KDJLGPY You’ll go in a draw to win a $50 gift card of your choice (see conditions below*) After reading this edition, I feel I know more about hep C.

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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 magazine

Edition 79

March 2013

To send:

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One $50 prize winner will be drawn for each edition.

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

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h. Community or youth worker

g. GP or allied health care worker

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7. Please describe yourself (circle as many as you want)

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www.mhahs.org.au

Hep Review magazine

Edition 79

March 2013

www.mhahs.org.au

www.hep.org.au

Are you affected by hepatitis and looking for support? Then Let’s Talk. promotions Hepatitis NSW now has a free counselling service called Let’s Talk.

Let’s Talk offers face to face, telephone and web based sessions. We have a team of qualified counsellors and a clinical psychologist, all with specialised knowledge in hep C. If you want to talk we have someone who will listen and work with you to start creating a better way of living. To make an appointment or for more information call Kirsty on 1800 803 990 or email kfanton@hep.org.au

Let’s Talk

Hepatitis NSW Counselling Service

Hepati tis Testing C factsheets overvie w Diagno sis and monito ring Princip les of H Princip CV tes les of H ting Who s CV tes hould The eig ting* consid ht basic for hep principle Australia er bein C? s that g are: g teste uide HC d V testin Inform • con g in fidentia ed con l, v sent fo oluntary consen testing r testin t and p Conve w o ith stfundam g ying H ental to test discussio informed CV tes na Australia t result • testin ’s respo re Liver fu s g n se to H is nction CV epidem critical to unde tests iology o rstandin Antibo f g H th C e V in the dy tests • testin c ommun g mu ity or have st be access PCR te ib been a sts t risk of le to all those who are • testin HCV in fection Il28 ge g will b e of the ne test and pro highest vided in p o s sible sta a timely Windo • testin ndard manne w perio r g is of b ds enefit to the pers • testin Fibros on bein g can b can g tested e critica of trans l to in m Liver b minimis ission and can terruption iopsy ation support harm • testin Also s g to mo ee nitor pe durin Diagno

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Hepatitis NSW’s range of factsheets We’ve recently updated our “Testing Overview” factsheet. To view the complete 6-page factsheet and our range of other factsheets please go to http://tinyurl.com/3f2gx2p

ople w g an their ca d after treatme ith HCV befo re re nt is an integra , • peo l part o f ple sho u ld n ot be d of fear enied te of sting be an HCV having their n cause am te where c st (e.g. in a s e associated mall co w on mmunity ith De-iden fidentiality is ha tif protect ied testing sho rder to mainta in privacy u where re ld be conside ). red to levant.

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Hep Review magazine

Edition 79

March 2013

promotions

hep C okmarks bo

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

www.hep.o rg .a u

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

Hepatitis NSW

join us

sms

0404 440 10

TRANSMISSIO

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

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www.hepatitisc.or

g.au

or call the

Hep C Helpline (see over)

Don’t discr

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Hepatitis C is hard to catch.

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E vic E Ser R lth F Hea

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

feature alcohol Quiz Answers From the quiz on page 40. See below or go to the ABC Health online answers: http://tinyurl.com/a9lg7zc which provide links for

more information about these aspects of alcohol. 1. Correct answer: b) Middy or pot (285 ml) of fullstrength beer. If you think your after-work glass of wine or stubby of beer is a standard drink, think again. Average serves of alcoholic drinks are rarely the same as a standard drink. This is because of alcohol percentage of drinks varies, as does the amount of the drink you actually get in your glass. For example, a stubby of full-strength beer (4.9 per cent alcohol) is 1.5 standard drinks, but a stubby of light beer (2.6 per cent alcohol) is about 0.8 of a standard drink. Wine is even trickier. The alcohol content for wines can range from less than 9 per cent to as much as 16 per cent. 2. Correct answer: c) Two. Australians love a drink, but experts say we need to cut back. It used to be okay for men to imbibe up to four standard drinks a day and women two drinks, but mounting evidence suggests no-one should drink more than two standard drinks a day. 3. Correct answer: a) One. Even low to moderate alcohol consumption can raise the risk of breast cancer, according to recent UK research. The background risk of breast cancer is around 12 per 100 women. (In other words for every 100 women, 12 will develop cancer.) But for every daily drink you have that risk goes up by about one. So for one drink a day about 13 women will develop cancer, and for two drinks a day, the figure is closer to 14 out of 100. 4. Correct answer: d) All of the above. The hangover, the dizziness, the thirst... if you’ve been out on the town the night before, there’s no doubt these symptoms point to a hangover. One reason alcohol makes you feel so bad is because it’s a diuretic - it makes you pee a lot, which depletes your body of

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

fluid. Also when your liver metabolises alcohol, it produces something called acetaldehyde, which has a toxic effect on body tissues including the brain. Fermented alcohol also contains congeners, which are a by-product of fermentation that contribute to the headache and dizziness of a hangover. 5. Correct answer: b) Sleep it off. No matter what the advertising gurus or your best mates say, there’s no simple remedy for hangovers. All you can do is drink water and sleep it off. •

Abridged from abc.net.au/health

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

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

A. For

people affected by hepatitis or other interested people

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

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

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

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

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

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obituary remembering Jeff Bell Jeff Bell, traditionally a Wiradjuri man from Cootamundra who worked and lived on the Coffs Coast, applied to become a Community Advocate for the C me Project in June 2012. A strong advocate for hep C and Aboriginal community, Jeff made no excuse for having contracted hep C and it was his intention to increase the awareness of hep C not only within Aboriginal communities but also the broader community as a whole, initially through the Aboriginal Hep C Awareness Campaign Don’t Be Shame! Love Your Liver workshop in Nambucca Valley. Jeff was keen to help advocate for a better deal for people affected by hep C. Despite having recently gone through treatment for his hep C, Jeff was diagnosed with liver cancer in August 2012. This was just before Jeff was due to come to Sydney for the C me training, and he succumbed to the cancer in October 2012. Jeff suspected that he may have contracted hep C in his youth. He had been feeling tired and fatigued and went to see his GP who suggested he should be tested for hep C. The test came back positive and his first thought was to undergo treatment to eliminate the virus. Because of the advanced deterioration of his liver, he was encouraged to undergo 12 months treatment which made him feel terrible. On top of this he was discriminated against by people who were worried they might catch hep C from him just through casual contact. Six months after the end of treatment, there was no sign of the virus in Jeff’s blood, but clearly the damage to his liver was too advanced and the cancer had already taken hold.

Jeff passed away at home surrounded by his family. His wife Pamela is keen to continue Jeff’s legacy in the hope that greater awareness and better treatment and services for people living with hep C will mean that other families do not have to lose a loved one in the way that Jeff’s family did. As mentioned previously, Jeff was involved in the Don’t Be Shame! Love Your Liver workshop. Its purpose was to increase hep C knowledge and awareness among Aboriginal people of all ages. Jeff jumped at the opportunity to assist and participated in the workshop by sharing his story, his experience of living with hep C and going through treatment. In an interview after his session, Jeff spoke candidly about his experience and treatment journey. This video is available on the official Where’s the Shame, Love Your Liver website: http://www.loveyourliver.net.au/videos/Nambucca/ HepCTreatmenth264.mov and is now used as a hep C resource. •

David Pieper, Hepatitis NSW Jeff’s family feel his death is a reminder of the importance for all people with hep C to have their condition monitored so they can make lifestyle changes and consider treatment before it is too late. Some people are not in a position to wait for the Federal Government to fund the improved treatments that have proved themselves successful and are already available in 25 other countries including the UK, USA and Europe. Hepatitis NSW

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

Hep Review magazine

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March 2013

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.

Research quick links

Prior alcohol consumption does not impair HCV treatment

Estimating the cost-effectiveness of NSPs in Australia

USA – Treatment of chronic hepatitis C infection (HCV+) has historically been shown to be less effective in patients with a heavy drinking history. The effect of moderate and heavy alcohol use on treatment with pegylated interferon-alpha and ribavirin (P/R) in an insured household population has not been previously reported. We investigated the effect of alcohol on treatment outcome in a cohort of 421 treatment-naïve HCV+ patients, members of an integrated health care plan treated with P/R between January 2002 and June 2008.

http://tinyurl.com/basaxcm Vitamin D deficiency associated with a poorer response to hep C treatment in people with HIV/HCV-co-infection http://tinyurl.com/akahwzz Can needle and syringe programmes and opiate substitution therapy achieve substantial reductions in hep C prevalence? http://tinyurl.com/bh4w7ou Astonishing data on Metformin for liver cancer http://tinyurl.com/a2qkdac Registry data show hep B medications appear safe during pregnancy http://tinyurl.com/a6nndoq

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If you have no access to the internet, please phone the Hepatitis Helpline for more information on the above studies.

A detailed drinking history was obtained for 259 patients. Regular drinking was reported by 93% of patients before HCV diagnosis, by 31% between HCV diagnosis and treatment, by 2% during treatment, and 12% after the end of treatment. Heavy drinking patterns were reported by 68% but despite these reports of heavy drinking, sustained virological responses (SVRs) were obtained in 80% of patients with HCV genotypes 2 or 3 and 45% of patients with genotypes 1, 4, or 6. Pretreatment drinking patterns and total alcohol intake were both unrelated to SVR rates. Abstaining less than six months before treatment was related to lower SVR rates in moderate, but not heavy, drinkers. HCV treatment relapse was unrelated to drinking after treatment ended. Conclusion: The amount of alcohol consumed before HCV treatment did not have a negative effect on treatment outcomes in our population. A history of heavy drinking should not be considered a deterrent to HCV treatment in members of an integrated health care plan who are closely monitored. •

www.hep.org.au

Abridged from onlinelibrary.wiley.com (11 Oct 2012) http://tinyurl.com/bcwvwn6

research updates Blood-borne viruses in elevated cancer risk among opioiddependent people

Strong link between diabetes and liver cancer

Australia – The objective of this study was to quantify cancer risk in opioid dependence and the association with infection by hep C, hep B or HIV. Participants included all 45,412 adults aged 16 years or over registered for opioid substitution therapy (OST) between 1985 and 2007. Notifications of cancer, death and infection with HCV, HBV and HIV were ascertained by record linkage with registries. Overall cancer risk was modestly increased compared to the general population. Individuals notified with HCV or HBV had a markedly increased risk of liver cancer; lung cancer risk was also increased in those with HCV. Cancer risk was not increased in individuals without a BBV notification, apart from pancreatic cancer. Cancer incidence increased significantly over time. The researchers concluded that BBVs play a major role in the cancer risk profile of opioiddependent individuals registered for OST. To address the dramatic increasing trend in cancer incidence, the OST setting could be utilised for cancer prevention strategies. Their key messages included... People who are opioid dependent have an excess risk of a range of cancers compared with the general population. The excess cancer risk is predominantly restricted to those with blood-borne virus infection. Cancer incidence rates have increased dramatically over time, supporting use of the opioid substitution therapy (OST) setting to opportunistically implement targeted cancer prevention strategies. •

Abridged from bmjopen.bmj.com (7 Oct 2012) http://tinyurl.com/adkmgrh The more interesting question – not posed in this study – would be the difference in liver cancer rates among people with opioid dependency who are either HCV positive or HCV negative. Hepatitis NSW

USA – People with high blood sugar are at greater risk of having advanced liver cancer at the time of diagnosis, which suggests diabetes may promote more invasive tumours. Several prior studies have also shown that cancer patients with diabetes often have worse outcomes, but the reasons why are not clear. A new study published in Cancer Investigation links diabetes to distant metastasis in patients with hepatocellular cancer. “The findings are very interesting and hypothesisgenerating,” says Gregory Connolly, senior instructor of medicine at the University of Rochester Medical Center. “The association we detected suggests that patients with liver cancer and diabetes may have changes in cancer cell signalling that promote tumour invasiveness. The more we understand about the mechanisms at work, the more successful we’ll be at treating patients with both diseases.” Connolly and colleagues looked at disease trends among 265 primary liver cancer patients diagnosed between 1998 and 2008. Of the total, they found that 34% had diabetes at the time of the cancer diagnosis. And among the diabetic group, 33% had liver cancer that had already spread to distant organs—compared to 10% of patients with advanced liver cancer who did not also have diabetes. Moreover, the diabetic patients who took insulin had the highest rates of advanced cancer, compared to diabetics who managed their blood sugars through diet restriction or oral medications. Most primary liver cancer is attributed to hepatitis or chronic alcohol abuse, but the National Cancer Institute reported in 2010 that diabetes is now associated with a greater percentage of liver cancer cases than any other factor. “Because the incidence of people with glucose intolerance and liver cirrhosis or primary liver cancer is so strong, it is imperative that we better understand the relationship so that these patients can be treated and managed in the best way possible,” says senior author Aram F. Hezel, assistant professor of medicine in haematology/oncology. •

Abridged from futurity.org (31 Oct 2012) http://tinyurl. com/cq2f5wh

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March 2013

research updates Further evidence for people with hep C to get healthy USA – Hep C paired with a BMI over 30 dramatically increases the risk of primary liver cancer development. New research published in two different respected medical journals demonstrates that people with hep C who also have a high body mass index (BMI) are at an especially elevated risk of developing primary liver cancer. A brief analysis of these conclusions clearly points to maintaining a healthy weight as an essential preventative measure to prevent liver cancer development. Due to improvements in hep C drug therapy, an increasing number of people with hep C are able to successfully defeat it. However, whether previous non-responders, those ineligible for therapy or people who choose to wait for better treatment in the future, persons living with hep C are left to try and prevent the advancement of liver disease. In particular, [it is recommended that] affected individuals aim to keep their liver as healthy as possible so that cirrhosis or primary liver cancer does not develop. •

Abridged from hepatitis-central.com (24 Sept 2012) http://tinyurl.com/a8gd8gm

Volatile anaesthetics may cause chronic hepatitis Australia – Modern volatile anaesthetics (VAs) may cause chronic hepatitis and cirrhosis, especially with repeated exposure in susceptible individuals, according to an Australian case report describing four patients in BMJ Case Reports. Routine checking of liver biochemistry after an anaesthetic might help identify patients at risk, particularly in cases where it was known that multiple anaesthetics were going to be needed, the authors said. BMJ Case Reports 2012; online •

Abridged from Gastroenterology Update, 21 Nov 2012. http://tinyurl.com/d33jkbu

www.hep.org.au

The needle in the haystack Australia – For those who could not attend the recent NSW NSP Workers Forum, you can access an encore performance of the plenary presentation given by Professor Carla Treloar, Deputy Director of the National Centre in HIV Social Research, Finding the needle in the haystack: An overview of new social research. The aim of this presentation is to provide a brief overview of key social research that has emerged in the last year and provide this in a way that is useful for NSP workers. Click here for the audio and PowerPoint presentations http://tinyurl.com/cw4ru8c •

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

Staying Safe: What can research about people who inject drugs tell us? Australia – Staying Safe: What can research about people who inject drugs tell us about how to avoid hepatitis C in the long-term? Next generation hepatitis C prevention strategies. Sam Friedman of the National Development and Research Institutes, New York, designed the original Staying Safe project. The underpinning idea of Staying Safe was to explore the strategies used by people who have injected for long periods but have not been exposed to hepatitis C infection with the view to developing innovative intervention strategies. Since then, work has been done in many sites around the world, including St Petersburg, Valencia, Prague, London, Sydney and Melbourne. New York has since received funding for and conducted a prevention trial in order to enhance the skills of people who inject drugs to avoid exposure to HIV/hepatitis C. Download the NCHSR presentation here http:// tinyurl.com/9wklsfw •

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

research updates The HCV partners study USA – The efficiency of hep C virus transmission by sexual activity remains controversial. We conducted a cross-sectional study of HCV-positive persons and their partners to estimate the risk for HCV infection among monogamous heterosexual couples. 500 anti-HCV-positive, HIV-negative index persons and their long-term heterosexual partners were studied. Couples were interviewed separately for lifetime risk factors for HCV infection, within-couple sexual practices and sharing of personal grooming items. Blood samples were tested for anti-HCV, HCV RNA, and HCV genotype and serotype. Sequencing and phylogenetic analysis determined the relatedness of virus isolates among genotypeconcordant couples.

Presentations from the Auckland viral hep conference: worker’s picks •

The social context of anti-viral treatment engagement: the making of patient citizenship in the treatment of HCV and HIV. Prof Tim Rhodes, London School of Hygiene & Tropical Medicine, UK. http://vimeo.com/51030374

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That’s right, women are...different: Sex differences and HCV infection. Prof Kimberly Page, Uni of California, USA. http://vimeo.com/49662583

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The eradication of hepatitis C infection in people who inject drugs total coverage, test, tell and targeted treatment. Margaret Hellard, Burnet Institute, VIC. http://vimeo.com/51035936

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To trust or not to trust…that is the question. Prof Paul Ward, Flinders Uni, SA. http://vimeo.com/49884544 http://vimeo.com/50951243

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Strategies long term injectors use to avoid HCV infection. Peter Higgs, Kirby Institute, UNSW. http://vimeo.com/51035604

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Staying Safe Sydney The logic of care and trust in HCV testing. Prof Carla Treloar, National Centre in HIV Social Research, UNSW. http://vimeo.com/51035233

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Ageing and continued illicit drug use –What are the implications for future health care? Susan Curruthers, Curtin Uni, WA. http://vimeo.com/51030375

Sexual transmission of HCV among monogamous heterosexual couples: The HCV partners study. Hepatology. 2012 Nov 23. doi: 10.1002/ hep.26164. [Epub ahead of print]

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Increasing burden of hepatocellular carcinoma in Australia and New Zealand. Prof Greg Dore, Kirby Institute, UNSW. http://vimeo.com/50950915

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Doctors are doing it by themselves: Experience of a hepatitis C virus (HCV) treatment initiation pilot in general practice in NSW. Dr Max Hopwood, National Centre in HIV Social Research, UNSW. http://tinyurl.com/d94s49q

HCV-positive index persons were mostly non-Hispanic Whites, with median age 49 years and median 15 years of sexual activity with their partners. Overall, HCV prevalence among partners was 4%, and nine couples had concordant genotype/serotype. Viral isolates in three couples were highly related, consistent with transmission of virus within the couple. Based upon 8377 person-years of follow-up, the maximum incidence rate of HCV transmission by sex was 0.07% per year or 1 per 190,000 sexual contacts. No specific sexual practices were related to HCV-positivity among couples. The results of this study provide quantifiable risk information for counselling long-term monogamous heterosexual couples in which one partner has chronic HCV infection. In addition to the extremely low estimated risk for HCV infection in sexual partners, the lack of association with specific sexual practices provides unambiguous and reassuring counselling messages.

Abridged from hepatitiscnewdrugs.blogspot.ca (26 Nov 2012) http://tinyurl.com/a5f8rcg

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March 2013

interferon-based treatment Triple combination treatment Incivo (telaprevir) and Victrelis (boceprevir) have been approved by the Therapeutic Goods Administration for the treatment of chronic hep C genotype 1 infection. 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 subsidised on Medicare although they are expected to be listed in 2013. 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. Treatment generally lasts for

either 24 or 48 weeks, depending on genotype. Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive. Contraception: Women of 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 tests at week 24 are unnecessary

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 for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. 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. Alternative access 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. •

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

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Will they consult with your GP about your hepatitis?

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Is the treatment dangerous if you get the prescription wrong?

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How has this complementary therapy helped other people with hepatitis?

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What are the side-effects?

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Are they a member of a recognised natural therapy organisation?

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How have the outcomes of the therapy been measured?

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

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 64) for more information and the contact details of relevant professional associations. •

Hep Review magazine

Hepatitis NSW. For more information, please phone the Hepatitis Helpline.

Edition 79

March 2013

support and information services Hepatitis Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. •

9332 1599 (Sydney callers)

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1800 803 990 (NSW regional callers).

Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 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 Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales detainees. 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.

www.hep.org.au

Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW). NSPs Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Helpline. Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277. Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card and they keep all medical records private. Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres.

support and information services 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 Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au AHCS online hep C support forum Australian Hepatitis C Support – an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338. Gosford: 5.30pm-7pm on the 3rd Thursday of each month at the Health Services Building, Gosford Hospital. Wyong: 1pm-2.30pm on the first Thursday each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609.

Are you looking for other services in your local area, or can’t find what you’re looking for above?

Coffs Coast Hep C support group This is a monthly meeting for people living with hep C, supportive others and on treatment, or thinking of treatment. The meeting is facilitated by healthcare professionals. For more information contact Helen Young 6656 7865. 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 Wednesday groups This is a relatively new group open to people who are considering or preparing for treatment, undergoing treatment and post treatment. Family and significant others are welcome to attend. The group meets every two weeks at the Nepean Centre for Addiction Medicine, Nepean Hospital on Wednesdays between 10.30 and 12.00. The first session for 2013 is on 9 Jan and will be a mixed session but each alternate session will be for women only. Our aims for this group are to provide social support, information and encouragement to people affected by HCV. For more information please contact George Klein on 0411 028423. 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.

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

Hep Review magazine

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March 2013

promotions Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, lifestyle education, monitoring of side-effects and referrals to other services. You will just need a referral from your local GP to attend the clinic. This is a great opportunity Image via Google Images to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today. •

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

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

Please phone 02 6198 9800.

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

HCV media hype leads to misery HCV legal and discrimination issues Govt decision on HCV PCR testing MPs decide to veto injecting rooms trial Commonwealth offers interferon to state prisons • Superannuation and you • Centrelink blues • Jobseeking and hep C discrimination • Hep C and the Family Law • Women and hep C • Timid politicians need some needle • HCV and sexual transmission 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 21, June, 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

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acknowledgements

Upcoming events

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

National Hepatitis Health Promotion Conference, Sydney, 14-15 November 2013. Aims 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. http://tinyurl.com/3pr4dcv

Complaints

Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA)

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

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

Do you want to help?

Image courtesy of Google Images

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

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 magazine

Edition 79

March 2013

Donâ&#x20AC;&#x2122;t put the boot into your liver look after it and live longer Your liver is one of your most important organs Knock it around too much and itâ&#x20AC;&#x2122;ll be game over Liver disease is commonly caused by drinking too much alcohol, catching hepatitis B or hepatitis C, being overweight or getting type 2 diabetes ... and men tend to have a more serious disease outcome. Phone the Hepatitis Helpline for info about keeping your liver healthy

Call 1300 HEP ABC (1300 437 222) for the cost of a local call

Or visit our website for up-to-date information about viral hepatitis...