Hep Review ED63

The Hep C Review Summer

December 2008

Edition 63

Stepping up for your second serve?

Hepatitis C retreatment now approved and funded in Australia New drug could stop liver damage Fibroscan liver diagnosis now available

From eucalypt leaves to maple trees – expat Aussie on Vancouver’s streets The Hep C Reviewmean ED63 December 2008 1

editor’s intro

W

elcome to another edition of our magazine. Hepatitis C retreatment was approved in Europe over six months ago (ED60, p6) and has now been approved in Australia for those of us who previously gave treatment a go but who didn’t clear the virus.

Retreatment gives us additional options in dealing with hep C and this is great news.

Even better, will be the hopeful success and availability of triple therapy, featuring pegylated interferon, ribavirin and telaprevir. Both of these developments are covered in this December edition of The Hep C Review.

Other interesting articles include two pieces on hep C and insurance. It seems only months ago when I applied for extra life insurance but was knocked back on the basis of having hep C. Additionally, the Fibroscan article is pretty interesting. This is a new technology that potentially replaces biopsy for people wanting to know what condition their liver is in.

Interesting people also feature heavily in this edition. There are the UK couple who styled their wedding on an activist approach; Stanley Greene, an Afghan-visiting photojournalist; John van den Dugen, an ACT activist; The Opal Miner; Elizabeth Knight, writing from Vancouver’s Downtown Eastside (and reminding me of The Wire’s Baltimore Eastside); and Mick, who strikes a chord with his days of Aussie beaches and surfing.

All in all, another good read!

Paul Harvey, Editor

Weblink of the month – We carry many articles downloaded from the HCV Advocate website. It’s a great source for info – check it out at ..

http://www.hcvadvocate.org/

We acknowledge the people of the various Aboriginal nations across NSW as the traditional owners of the land on which we live.

2

www.hepatitisc.org.au

Council keyhole

The Council’s approach to providing hepatitis B services

The foundation, history, funding and focus of the Hepatitis C Council of NSW (HCCNSW) has centred on meeting the needs of people with hep C. However the Council regularly reviews and discusses its role in relation to hep B. Within our most recent strategic planning process (2006-2010), we amended our mission statement to refer to generic “hepatitis” rather than “hepatitis C” exclusively: “The Hepatitis C Council of NSW strives to be representative, supportive of and accessible to people affected by chronic viral hepatitis, especially those with hep C.” The HCCNSW resolved to continue to do some work in relation to hep B, particularly where this work intersects with our work around hep C, for instance: • there is some overlap in groups of people engaging in risk behaviours leading to HBV and HCV transmission (and some coinfection), particularly among Aboriginal and Torres Strait Islander people, people who inject drugs, people in prison and people from some culturally and linguistically diverse backgrounds • many of the treatment sites are the same • the health bureaucracy covering both hep B and C is the same • there is some commonality between the two – both conditions impact on the liver and there is similarity in some transmission routes • there is often confusion between hep B and C. However, through our strategic planning process and discussions on our Board of Governance, we acknowledged that we could not formally take on a substantially increased role in relation to hep B, or unfunded hep B...

Continued on page 43.

Cover image, Nadal-serve, by Chris Silva, via www.flickr.com

acknowledgements Calling all members

Editor/layout/production: Paul Harvey Editorial Committee: Tim Baxter Kay Bazley Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang

Look inside for your special Membership Matters (p45).

Our 2008 membership year began on 1 March – we look forward to receiving your applications or renewals.

It’s now easier than ever – join or renew securely online... www.hepatitisc.org.au Or use the form at the back of this magazine.

Seeking your story

HCR medical & research advisors: Dr David Baker Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Geoff McCaughan Dr Cathy Pell Assoc Prof Carla Treloar Dr Ingrid van Beek Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading: Andi Andronicos Prue Astill Sarah Bowman Judith Campbell Andrew Dunstall Samantha Edmonds Margaret Hancock Adrian Rigg Maureen Steele Cindy Tucker

Personal stories provide balance to our information articles.

They are often written by people with hep C, but also by family members or friends. The experience of health care workers would be equally valuable to many readers.

Please consider writing in with your story. Published articles attract a $50 payment.

Author’s name and contact details must be supplied (for editorial purposes) but need not be included in the printed article.

Comic: Andrew Marlton: firstdog@crikey.com.au Contact the Hep C Review: ph 02 9332 1853 fax 02 9332 1730 email paulh@hepatitisc.org.au text/mobile 0404 440 103 post PO Box 432, DARLINGHURST NSW 1300 drop in Level 1, 349 Crown St, SURRY HILLS, SYDNEY

Articles should be between 400800 words.

Publication of submitted articles is at the discretion of the Editor and Editorial Committee.

Articles considered inflammatory or vilifying will not be published.

We’re really looking forward to receiving your articles.

• ED

Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) The Hepatitis C Council of NSW is an independent, community-based, nonprofit, membership organisation. We are funded by the NSW Health Department.

Aside from HCCNSW editorial comment, views expressed in this magazine or flyers enclosed with it, are not necessarily those of the Hepatitis C Council of NSW. Neither are such views necessarily those of our funding body.

Contributions to The Hep C Review are welcomed and are subject to editing for spacing and clarity. Contributors should supply their contact details – although we do not publish such details unless asked. We’re happy for people to reprint information from this magazine provided that The Hep C Review and any particular author/s where such exist are credited, and the edition number and date are highlighted. This permission does not apply to graphics or cartoons.

ISSN 1440 – 7884

Unless stated otherwise, people shown in this magazine are stock photo models and used for illustrative purposes only. They have no actual connection to hepatitis C. The Hep C Review

ED63

December 2008

3

contents Letters National Corrections Drug Strategy 5 WA prisons 5 Postscript – Mo’s letter 5 News Kiedis bares all in memoir 6 Quebec rejects safe injecting facility 6 US approval for first HBV viral load test 6 Promising data on boceprevir 7 Clemizole – when old becomes new 7 UAE wavers on hep C ban 7 Irish insurance 8 Liver disease troubles obese kids 8 Illegal blood suppliers face jail 8 Poverty spreads hepatitis in Pakistan 9 With hep C, Allman still a ramblin’ man 9 Hep C keels Cole over 9 A UK hep C wedding 10 Bulgaria Health sued over hep B 10 New drug could help stop liver damage 10 Hep C retreatment gets the Aussie nod 11 Hep C going untreated 11 NSP success – low HIV rates among Aussies who inject 11 Drug harms exchanged and avoided 12 Plan to ban youth nipple piercings 12 Proud Phil is a Pride finalist 12 Millions want less alcohol advertising 13 Features Fibroscan helps decipher dodgy livers 14 REALIZE and ADVANCE: two Telaprevir studies 15 Hep C diagnosis: a testing time 16 Drug trends bulletin – patterns of drug use 19 Social determinants of health – social exclusion 22 Still the boy next door 24 Former inmate’s mission to break Aboriginal cycle 26 Hoops and hurdles 34 Worried about cancer? Cut back on alcohol 35 Ensuring we get a fair deal 36 Hep E afflicts Ugandans returning after war 37 Stanley Greene: photographing illness while confronting his own 38 Obituary – Talented agent loved his actors 39 My story Opal Miner’s story: part 2, a welcome surprise 18 From eucalyptus leaves to maple trees 20

4

www.hepatitisc.org.au

Mick’s story: getting rid of my backpack 28 Flo’s story: a journey through hep C and treatment 40 Opinion Injecting drug users with hep C: should they be offered treatment?

25 Tackling the cause, not result of crime 27 Battle against drugs needs realistic approach 32 Promotions NEW – hep C magazine 43 Access all areas – AOD info resource 44 Post-treatment research study 44 Supportive drop-in evening 44 Hep C treatment promo resources 45 Caring for carers study 46 Hep Connect – peer support service 46 HALC legal centre 47 hepCaustralasia forum and Council website 47 Hep C bookmarks 48 Research updates Breaking the silence surrounding hep C 49 Vitamin D and liver disease 49 HCV clearance improves insulin resistance 50 Hep C vaccine: supply and demand 50 Insulin resistance, diabetes and increased liver fibrosis 51 Social worker role in hep C treatment 51 Hep C and kids QoL 52 The physical health status of young Australian offenders 52 Cancer link to liver’s healing 53 An update from NCHSR – Under Construction 53 An update from ARCSHS – Hep C in Indigenous communities 53 Regular features Council keyhole – the Council’s approach to providing hep B services 2 Conference noticeboard 10 Q&A: testing times 12 Resource of the month – ASHM pamphlets 15 Harm reduction poster – Hepatitis & HIV transmission 30 Hello Hep C Helpline – “I can’t concentrate” 42 Membership matters 45 A historical perspective – from ED3, Dec 1992 48 Interferon-based therapy 54 Complementary medicine 55 Support / info services 56 Noticeboard 58 Membership form / renewal / tax invoice 59

letters National Corrections Drug Strategy

WA prisons

We strongly endorse the progressive recently released National Corrections Drug Strategy that is “based on the National Drug Strategy’s harm minimisation approach which includes preventing anticipated harm and reducing actual harm.”

Australian State and Territory Governments should commence Needle Exchange Programs (NEPs) in prisons across the country.

The provision of sterile injecting equipment through Needle and Syringe Programs (NSPs) in the community has proven to be an effective, safe and cost effective strategy. Extensive evaluation of NSPs in community settings has suggested similar benefits are likely in correctional environments.

Most inmates committed to prison soon return to the wider community. Infections contracted in prison soon become health concerns for the wider community after prisoners have served their sentence. With over 40,000 Australians passing through our prison system each year, the health of prisoners and the community cannot be dealt with as separate issues.

NEPs are currently available in prisons in nine countries with three additional countries scheduled to commence implementation. No evidence has emerged as yet from any evaluation that prison NEPs have resulted in increased drug use or any security or safety problems. However, prison NEPs have reduced the risk of needle-stick injuries to prison staff. These evaluations show that NEPs make prisons safer places to live and work.

In 1993, the World Health Organization declared that “all prisoners have the right to receive health care, including preventative measures, equivalent to that available in the community”. Failure to achieve this violates human rights.

Independent researchers estimated that in the period 1991-2000, community NSPs cost governments $120 million but prevented approximately 25,000 HIV infections and 21,000 hep C infections, and saved $2.4–7.7 billion in treatment costs alone. By 2010, an estimated 4,500 HIV/AIDS deaths and 90 hep C deaths will have been prevented.

I want to tell you about treatment for hep C positive prisoners in the Western Australia prison system.

As it stands, hep C treatment is readily available in WA prisons.

All WA prisons have a trained hep C specialist nurse who liaises with visiting medical practitioners and helps organise treatment regimes and any required tests and scans. The nurses also offer education and counselling to prisoners, covering topics including: dietary recommendations, treatment options, coordination of blood tests, explanations of results, post release referrals and numerous other services.

I have been hep C positive for over 20 years and have found all medical staff to be extremely professional and compassionate. I completed 12 months combination treatment and after three months the disease could not be detected but unfortunately it reappeared six months after cessation of treatment.

If anyone wants more information or anything else, please write to me [contact HCR editor for address].

Mark, WA.

Postscript – Mo’s letter Following up further on Mo’s letter (ED 61, p5).

Yes, researchers are looking at why some injecting drug users don’t seem to contract hep C.

Implementation of prison NEPs is consistent with the National Corrections Drug Strategy.

International studies are not yet complete, and we will report back any findings when they become available.

John Ryan, CEO, Anex (Association for Prevention & Harm Reduction Programs)

• ED

The Hep C Review

ED63

December 2008

5

Stock photo - image via Google Images

news

Kiedis bares all in memoir USA – Lead singer of the Red Hot Chili Peppers, Anthony Kiedis, has published his autobiography, assisted by Larry Solomon.

It details his life growing up with a womanising and drugdealer father and hardworking mother, his early days with the Peppers, finding out he had contracted hep C after years of drug abuse and reflections on life in the band, performing their “own unique sonic stew”.

The international bestseller has drawn much praise for Kiedis’s open account of a life which is not the type most people would want to share with the world.

Scar Tissue is also on the list of 50 Books You Can’t Put Down as part of this year’s Books Alive campaign.

• Abridged from The Sunday Territorian, Sunday 10/8/2008

6

www.hepatitisc.org.au

Quebec rejects safe injecting facility Canada – Quebec has decided not to open safe-injection sites for drug users, citing too little scientific evidence about their effectiveness.

The decision comes only two days after Tony Clement, the federal Health Minister, criticised the Canadian Medical Association for supporting Canada’s first supervised druginjection site in Vancouver, arguing it is against their profession’s code of ethics to allow drug users to shoot up.

The Canadian federal government is a vocal opponent of the project and has repeatedly tried to shut it down, but a spokeswoman for the Quebec Health Minister Yves Bolduc said that did not influence them.

“We are not ready to endorse what Mr Clement said,” MarieEve Bedard said.

“There’s a question of public opinion, but we are also concerned about the fact that there is no consensus in the medical community about this. So right now we don’t have enough information to go ahead.”

• Abridged from Canwest News Service (21 August 08) via www.dailydose.net

US approval for first hep B viral load test USA – The United States Food & Drug Administration (FDA) has approved the Roche COBAS TaqMan HBV Test, the first assay for [measuring hep B viral load] available in the US. The test uses Roche’s real-time PCR technology to quantify the amount of HBV DNA in a patient’s blood. Doctors may then use viral load testing results to establish a baseline level of infection and during treatment as an aid in assessing individual responses to therapy.

Widespread application of antiviral therapy along with the hep B vaccine has helped reduce prevalence; however, hep B remains a serious and potentially life threatening global disease, potentially resulting in death from extensive liver damage or liver cancer for chronically infected people.

Because the goal of hep B therapy is to treat until the virus is undetectable, it is critical for viral load monitoring tests to quantify very low levels of virus.

Similarly, it is important for the test to quantify very high levels of virus (higher than 100 million IU/mL), an indicator of the need for more or less aggressive treatment.

• Abridged from Roche press release, 4 Sept 2008, via Google alert.

Promising data on boceprevir USA – Schering-Plough has reported promising early results from a mid-stage study involving its experimental hepatitis C drug, boceprevir.

The company said the favourable results were seen in a Phase II trial of people who had not been previously treated for their infections.

One group of people received boceprevir along with ScheringPlough’s widely used current dual therapy – the injectable interferon drug Peg-Intron and anti-viral pill ribavirin – while another group received only Peg-Intron and ribavirin.

After 12 weeks of treatment, up to 79% of people in the boceprevir group had undetectable levels of the virus in their bloodstreams, compared with 34% of those taking only Peg-Intron and ribavirin.

The company noted that the results, although encouraging, were only preliminary.

• Reporting by Lewis Krauskopf and Ransdell Pierson, editing by Gerald E. McCormick. © Reuters.

Abridged from www.reuters. com

Clemizole – when old becomes new USA – Californian researchers say they’ve developed a novel approach to fighting hep C’s reproduction process using an obsolete antihistamine.

The Stanford University Medical Center scientists said the advance involves two discoveries. “One is that a protein called NS4B is instrumental in binding some of the genetic material, or RNA, and allowing hep C to replicate.”

“The other is that the former anti-itching drug clemizole hydrochloride could hinder that protein, resulting in a tenfold decrease in virus replication with no apparent harm to infected liver-like cells.”

Since the former antihistamine drug has previously been used by people, it is automatically eligible for human testing.

“We’re excited about this and we’re actively moving forward toward clinical trials,” said Dr Jeffrey Glenn, an associate professor of gastroenterology and hepatology and a senior co-author of the paper with Professor Stephen Quake. The lead authors are Dr Shirit Einav and bioengineer Doron Gerber.

The research appears in the online edition of the journal Nature Biotechnology. © UPI. Abridged from www.upi. com via Google Alert.

The Hep C Review

news UAE wavers on hep C ban United Arab Emirates – People in the United Arab Emirates (UAE) living with hep C face an anxious wait after reports the UAE Ministry of Health is reconsidering plans to add the bloodborne disease to a list of deportable diseases.

A Ministry of Health circular, leaked in July’s Medical Times, said visa applications and renewals would include a new screen for HCV. The news prompted a backlash from physicians and global health organisations that branded the move “unethical”.

However, a source at the Ministry recently said the decision was [being reconsidered] after concerns about its potential economic impact on the country’s construction industry.

The majority of the UAE’s immigrant labour workers are recruited from Asia, a region that carries a high prevalence of hepatitis C. Charles Gore, president of the World Hepatitis Alliance, said he was pleased that the UAE had taken time to reconsider the decision, but urged the government to be proactive in identifying and treating those affected by the virus.

• By Joanne Bladd (15 August 08). Abridged from www. arabianbusiness.com We wonder what the UAE policy is towards hep B, which is very common in their region? ED

ED63

December 2008

7

news Irish insurance Ireland – Minister for Health and Children, Mary Harney, and Ireland’s Health Service Executive (HSE), have officially launched the new Hepatitis C Insurance Scheme.

The insurance scheme will enable people who contracted hepatitis C ‘medically’ through contaminated blood or blood products to take out life insurance, mortgage protection and, in due course, travel insurance.

In each case the person will pay the average basic premium which an uninfected person of the same age and gender would pay. The new scheme will pay the additional premiums levied or cover the additional risks that would otherwise prevent a policy being taken out.

The inability to get affordable insurance – or any insurance at all – has long been recognised as a barrier to normal living and working for those who are infected.

“This Scheme will have a very positive impact on the lives of those infected as it will ensure that they can take out life or mortgage insurance in much the same way as anybody else,” said John Dwyer, Scheme Administrator.

The website for the scheme is: www.hepcinsurance.ie • Abridged from www.hse.ie via Google Alerts.

See article on UK insurance concerns, p36.

8

www.hepatitisc.org.au

Liver disease troubles obese kids USA – In a new and disturbing twist on the obesity epidemic, some overweight teenagers have severe liver damage caused by too much body fat, and some have needed liver transplants.

Many more may need a new liver by their 30s or 40s say experts, warning that paediatricians need to be more vigilant. According to doctors interviewed by The Associated Press and recent medical studies, the condition can lead to cirrhosis and liver failure or liver cancer, and is being seen in kids in the United States, Europe, Australia and even some developing countries.

The American Liver Foundation and other experts estimate that 2-5% of American children over age five, most of whom are obese or overweight, have the condition, called fatty liver disease.

Some experts think as many as 10% of all children and half of those who are obese may suffer from it, but note that few are given the simple blood test that can signal its presence.

• By Linda Johnson, Associated Press writer.

Abridged from www. loraincountymoms.com Being overweight is a concern, especially if you also have hep C (which is also associated with fatty liver and diabetes type II).

ED

Illegal blood suppliers face jail China – People found guilty of collecting or supplying blood, which is later proven to have caused death or serious illness in the recipient, may now face life in jail, according to the Supreme People’s Court and the Supreme People’s Procuratorate.

The new punishments will apply to those found guilty of collecting or supplying blood that causes at least five recipients to contract AIDS, hepatitis B, hepatitis C or syphilis virus, or causes them to experience severe anaemia, blood building obstructions or organ malfunction, said Ni Shouming, spokesman for the Supreme People’s Procuratorate.

China is well known for its underground blood collection and supply gangs. A law introduced in 1998 forbids donors from giving blood more than once every six months.

In 2006, the Ministry of Health issued a regulation setting out detailed rules on laboratory testing, the storage and transportation of blood plasma and the reporting of any adverse reactions.

In the same year, 95 percent of all blood collected for clinical use in China came from voluntary donations, the ministry said.

• By Xie Chuanjiao. Abridged from The China Daily, 23 Sept 08. via www. chinadaily.com.cn

Poverty spreads hepatitis in Pakistan

With hep C, Allman still a ramblin’ man

Pakistan – Poverty, ignorance and unemployment are the main reasons behind why youth in Pakistan are getting infected with diseases like hepatitis B, C and HIV.

USA – Gregg Allman has lived to tell about it. But barely. The singer, organist and namesake of the Allman Brothers Band had the obligatory rock-star battles with drugs and drink – finally getting clean in the mid-’90s. He’s lived through the death of his brother, two bassists and even a marriage to Cher.

Professor Syed Abdul Mujeeb of the Jinnah Post Graduate Medical Centre said young people, frustrated because of unemployment, psychological pressure, and economic burden, often release their frustration in drug use.

“Most young people are poor and prefer injecting, which requires a smaller amount of a drug, and gives them more pleasure,” he said. Once they become drug injectors, they are easily infected with hepatitis C or HIV. “We have about five million drugs users in our country, including 100,000 injecting drug users in Pakistan,” he said.

He said the basic requirement is to tell people that they must not inject drugs unless it is unavoidable. He added that people must make sure that the needle is unused and sterile, whenever they inject.

But his 60th year was possibly his toughest. The Allman Brothers Band was off the road for a year while Allman was being treated for hep C. “I thought I’d just play guitar and piano and write some songs,” Allman said from his home in Georgia.

“But for 24 weeks, it was like I was under house arrest,” he said of the painful, debilitating treatment.

Allman spent decades abusing his body like few can do and survive, so the hepatitis diagnosis wasn’t exactly a shock to anyone.

• Abridged from www. bostonherald.com, 14 Aug 08.

news Hep C keels Cole over USA – It’s not visible to the naked eye, but Natalie Cole has just begun the fight of her life.

The Grammy winning singer is battling hepatitis C, and on ET she shared her story for the very first time with her good friend, Paula Abdul.

“In 1980-1982, I was doing heroin,” reveals Natalie, tracing the possible cause of contracting the disease.

“The first day that ‘This Will Be’ came out on the radio I was on my way to get heroin.”

While she overcame her drug problems long ago, she’s paying the price today.

“This is a virus that was dormant in my body for 25 years,” she explains. “I had no symptoms, was feeling great, working out like a crazy person and this just keeled me over, like a feather.”

Natalie has lost a lot of weight due to her struggle, but remains light-hearted about it: “I now tell people I’m [a] size I have always wanted to be for 20 years.”

The good news is that Natalie’s form of the disease is treatable – although she experiences the traditional side effects from the treatment, such as nausea and her hair falling out.

In addition to loving friends and family helping to boost her incredible spirit, Natalie of course has her music.

© PPI. Abridged from http:// regionaltimes.com, 9 Oct 08.

• Abridged from www. etonline.com

The Hep C Review

ED63

December 2008

9

UK – A couple in Cornwall married at a wedding with a hep C theme. Chrissy and John got to know each other through an internet chat site for people with the condition.

“On our wedding gift list we just asked everyone to tell at least one person about hep C; for us, that’s the best wedding present ever,” said Chrissy, a 50year-old mother of three.

After the photographs, Chrissy and John, a 54-year-old antiques dealer, boarded a vintage bus with their family and friends and travelled to the centre of Truro, where they handed out hep C awareness leaflets. “This was our honeymoon,” she said.

After three months of treatment Chrissy found herself having regular online chats with another person with hep C called John, who lived about 35 miles away. John had just been diagnosed and was about to start treatment.

“He asked if we could meet as he wanted to see someone on treatment – some chat-up line I thought! We met for coffee, I talked him into coming to a hep C support group and everything progressed from there,” Chrissy said.

“We’re a normal couple. It was just that hep C brought us together – our silver lining with this virus.”

Bulgaria Health sued over hep B Bulgaria – Four people with hepatitis B filed a collective court suit against the state-run National Health Insurance Fund (NHIF) for AU$121,000 because it refused to provide the urgent medical treatment they needed.

Todor Petrov, one of the litigants, said that NHIF refused the medical treatment with the argument that the financial amount allocated for the hepatitis B programme was exhausted in March 2008.

The average monthly amount needed for the treatment was about AU$2,522, so Petrov had to take out a loan. It was absurd that NHIF budget was exhausted as early as March 2008, only few months into the new year, he said, as quoted by Bulgarian Television.

The patients met thanks to Hepassist, the national association fighting against hepatitis.

• By Elitsa Grancharova.

Abridged from The Sofia Echo, 24 Oct 08, via Google Alerts.

Stock photo - image via Google Images

news A UK hep C wedding

New drug could help stop liver damage Australia – Melbourne researchers have developed a drug, known as FT011, that could prevent fibrosis, a condition associated with up to 45% of diseases in the developed world.

Fibrosis is behind health problems such as liver cirrhosis, kidney disease, heart failure, diabetes and lung conditions.

Tests on rats by scientists from Melbourne University and St Vincent’s Hospital, led

by Professor Darren Kelly, showed FT011 stopped fibrosis developing.

• Abridged from ABC Health Updates.

Conference noticeboard

PS: Chrissy has confirmed that she has cleared her hep C.

Harm Reduction 2009: IHRA’s 20th International Conference

• By David Hurst. Abridged from www.timesonline. co.uk via www. hcvadvocate.org

More info: http://newsletter.ihra.net

10

www.hepatitisc.org.au

Bangkok, Thailand, 19-23 April 2009

news Hep C retreatment gets the Aussie nod

Hep C going Low HIV untreated rates among Australia – Hepatitis Australia Aussies who has called for urgent action to treat people with hepatitis C inject after new figures revealed more

Australia – People with chronic hepatitis C who didn’t respond or relapsed after previous therapy can now be re-treated with pegylated interferon (Pegatron) combination therapy following approval of a new indication by the Therapeutic Goods Administration (TGA).

than 98 per cent of the 200,000 Australians living with the virus did not receive any treatment last year.

Pegatron combination therapy (pegylated interferon alfa2b, 1.5 mcg/kg once weekly and ribavirin, 800-1,400mg daily) has been approved as a 48-week standard-dose for retreating people with chronic hepatitis C whose prior treatment did not result in sustained virological response (SVR).

Professor Jacob George of the Storr Liver Unit at Westmead Hospital said the approval is a major step in hepatitis C management.

“Having access to retreatment for those who have failed previous therapy for a host of possible reasons, is a critical step forward in ensuring that as many people as possible with chronic hepatitis C can access effective treatment with the possibility of eradicating the virus,” said Professor George.

• Abridged from www.6minutes.com.au 3 April 2008.

Despite an available cure for many, the number of people with severe liver disease as a result of untreated hep C has risen from 35,900 to 47,600 in the past five years.

Helen Tyrrell, head of Hepatitis Australia, said she was alarmed by new figures from the National Centre in HIV Epidemiology and Clinical Research, which showed only 3,539 people, or 2% of Australians with hep C, accessed treatment last year.

“Treatment isn’t for everyone, but people living with hep C need to be aware effective treatment is available so they can make an informed decision about what is right for them.”

Ms Tyrrell urged governments to develop awareness campaigns about treatment options and improve access to specialist staff.

“We have a situation where the barriers to hepatitis C treatment have not been adequately addressed,” she said.

• By Julia Medew, abridged from The Age, 24 Sept 2008.

The Hep C Review

Australia – We have had “huge success” in keeping HIV rates low among injecting drug users, out-performing the US, UK and most of Europe, researchers claim in a new international report.

The study in The Lancet estimates that three million of the world’s 16 million injecting drug users are HIV-positive.

In nine countries including Indonesia, Thailand, Kenya, Argentina and Spain, more than 40% of users had HIV, and the rate was 72% in Estonia.

Australia registered one of the lowest rates in the world, with just 1.5% with HIV, compared to 16% in the USA. Study leader Dr Bradley Mathers, from the National Drug and Alcohol Research Centre at the University of NSW, said Australia was looking very good on the world stage.

“That’s largely because we acted very quickly back in the 1980s to implement methadone programs and needle exchange programs,” Dr Mathers said.

• Abridged from The Sydney Morning Herald 25 Sept 08. © AAP The communities of people who inject drugs also deserve congratulations for responding to health promotion messages and taking on board safer injecting practices. ED

ED63

December 2008

11

news Drug harms exchanged and avoided Australia – Hepatitis C Victoria applauds Barwon Health and the Victorian Pharmacy Guild for their decisions to expand access to needle syringe programs (NSPs) across the Geelong region (The Bellarine Independent, 1 Aug 08).

Australia has been a leader in the prevention of HIV and hepatitis C, having one of the lowest HIV transmission rates in the world [among people who inject drugs].

NSPs have been a fundamental and cost-effective part of Australia’s harm-reduction strategy, yet access, particularly in smaller cities and rural areas, still remains a challenge.

Lack of access to clean injecting equipment is not only a human rights issue, it is a costly public health issue affecting our whole community.

In 1998 University of Sydney’s Department of Public Health estimated that every 1,000 new hepatitis C infections would cost the health care system $46 million over the ensuing 50 years.

For these figures to be looked back upon as a wild overestimate rather than a harsh reality, evidence-based harmreduction initiatives like the proposed NSP plan are vital.

• Abridged from CEO of Hepatitis C Victoria, Helen McNeill’s, letter in The Bellarine Independent, 12 Sept 08.

12

www.hepatitisc.org.au

Plan to ban Proud Phil youth nipple is a Pride finalist piercings Australia – [A Western Australian parliamentary committee is investigating banning body piercing for all under-18s.]

Health Consumers Council executive director Michele Kosky was concerned that banning under-18s from having their nipples pierced could lead to more dangerous acts of teenage defiance.

“What other forms of defiance will teenagers use if they can’t get piercings?” Ms Kosky said.

Primal Urge Piercing manager Bob Anderson, whose daughter had a nipple pierced when she was 16, said there were inconsistencies about what young people were allowed to do.

“Why does the WA government allow people under 18 to work and pay taxes, live away from home, pay rent, pay electricity and drive cars, yet when it comes to body piercing, they treat them like children?” Mr Anderson said. “It smacks of absolute hypocrisy.”

Ms Kosky said the focus should be on minimising the risk of spreading blood-borne infections such as hep C. “It is really, really important that piercings are properly regulated.

The consumer wouldn’t know that the person is not well trained.”

• By Anthony Deceglie.

Abridged from Sunday Times, 14 Sept 08 via Google Alerts.

Australia – Getting on with the job was the only answer after a Northern Territory man was thrown from his motorcycle 16 years ago. He contracted hep C while being treated in hospital.

Despite becoming a quadriplegic, Phil Kerr carried on with life, continued running a business and even expanded one of the longest operating automechanical service centres in Darwin.

Mr Kerr is a finalist in the role model categories of the Territory’s Pride of Australia Medal.

He said that being nominated in the prestigious program made him “feel pretty proud”.

“I don’t feel like a role model – I have just carried on and helped when I can,” he said.

“I don’t know who nominated me, but thank you. It makes me proud to be a Territorian.”

Mr Kerr was thrown from his motorbike at a speedway meet in 1982.

“A motorbike accident couldn’t take me, a blood disease couldn’t either. I am going to be around for a few years still,” he said.

• Abridged from The Sunday Territorian, 14 Sept 08.

news Q&A: testing times

Millions want less alcohol advertising Australia – More than eight million Australians want a reduction in alcohol advertising, with half saying alcohol has had a negative impact on their family, a new study has found.

Roy Morgan Research conducted the study for the Salvation Army, which is calling on all Australians to consider their drinking habits and the impact they have on their families.

Gerard Byrne, the coordinator of the Salvation Army’s drug and alcohol treatment program, said the organisation supported the idea of reducing alcohol advertising.

“The whole issue has to go under the microscope,” Mr Byrne said in a statement.

The Salvation Army is calling for “significant reduction” in the amount of alcohol advertising and a review of current advertising guidelines.

It also wants the federal government to launch an awareness campaign about the effects of alcohol on Australian families.

• Abridged from AAP (20 Oct 08) via www. news.com.au via Google Alerts

After first being tested, I was told I had hep C. Then I was retested about six months later for all BBVs and they found no trace of hep C. Since then, I’ve been retested three or four times and I’ve always come back negative (no trace). How is it possible for me to get rid of it so quickly and without the help of interferon treatment?

From what you say, it sounds like you never actually had hep C but had a “false positive” result for that initial blood test.

This is a possible, although uncommon, result with hep C antibody testing. Because of this, people who return a positive antibody test but have no transmission risk factors, should have a confirmatory PCR blood test.

For more info about hep C antibody and PCR blood tests, please see p16 and our website factsheets. ED

Q&A is a new feature, a suggestion from

readers in our recent HCR readership survey. Please write, email, text or phone in with your question – see our contact details on page 3. ED

The Hep C Review

ED63

December 2008

13

feature

Fibroscan helps decipher dodgy livers Fibroscan is an innovative medical device that gives Australian clinicians a brand new technique in assessing people with liver disease, reports Vic Health.

Alfred Gastroenterology Unit Director Associate Professor Stuart Roberts is excited about the possibilities the device brings, not only in care and treatment but also research opportunities.

“The Fibroscan is an innovative medical device that gives us a brand new technique in assessing patients with liver disease,” Associate Professor Roberts said.

“Until now, liver biopsy has been the gold standard in determining the severity of liver disease [but they] are invasive, costly and have significant risks for patients, including bleeding and the chance the lungs, kidneys or gall bladder could be punctured during the procedure.”

The Fibroscan measures liver stiffness that is directly related to liver fibrosis. It is non-invasive – measuring liver stiffness with an ultrasound probe – and is at least 95% accurate in diagnosing cirrhosis or advanced fibrosis across a range of different liver diseases.

This new way of measuring liver disease can be done in an outpatient appointment and takes just 10–15 minutes.

“The device assesses the velocity of sound waves to measure the elasticity of the liver [and] the stiffer the liver, the more scarred it is,” Associate Professor Roberts said.

“The more accurate we are at diagnosing cirrhosis, the better placed we are to manage liver disease and screen for liver cancer, which is a greater probability in such patients.”

The device, which originated in France and has been used in Europe for several years, is also useful at the other end of the scale—in detecting minor fibrosis.

14

www.hepatitisc.org.au

Therefore, people with minimal scarring can also avoid having a painful biopsy but still be aware of their condition and be reassured.

Those who will benefit from the new device include people with fatty livers, cirrhosis of the liver, hepatitis B, hepatitis C, HIV, cystic fibrosis and, possibly, people with haemophilia or diabetes.

Stock photo - image via Google Images

A

new device is set to revolutionise the diagnosis and management of patients with liver disease. Fibroscan units have been delivered to The Alfred Hospital, Melbourne, and to St Vincent’s, Concord and Liverpool hospitals in Sydney.

“There are many research opportunities with this device—we are looking at using it to monitor patients with haemophilia, who would obviously have been at big risk with a liver biopsy, cystic fibrosis and possibly diabetes,” Associate Professor Roberts said.

“We can follow patients with yearly measurements and monitor any changes in scarring and then treat accordingly.”

It is expected that many hundreds of people with chronic liver disease will benefit from the Fibroscan device.

The Fibroscan at The Alfred, which costs over $100,000, was funded by the Whole Time Medical Specialists Fund and the gastroenterology and infectious diseases departments.

• Abridged from www.dhs.vic.gov.au/ humanservicesnews/sep08/liver.htm

feature

REALIZE and ADVANCE: two Telaprevir studies Alan Franciscus reports on a frontrunner in the new treatment sweepstakes.

T

ibotec has announced that it will begin screening patients for a large phase III study to evaluate the combination of telaprevir, pegylated interferon plus ribavirin in people who did not achieve a sustained virological response to a previous course of treatment with pegylated interferon plus ribavirin.

Tibotec is Vertex’s commercial partner that is conducting clinical trials outside of the United States, Canada and Mexico.

Stock photo - image via Google Images

The study has been named REALIZE (Retreatment of Patients with Telaprevir-based Regimen to Optimize Outcomes). This worldwide study will enroll about 650 people and will include those who previously didn’t respond or partially responded and relapsed.

The REALIZE Study will include three arms: • Telaprevir dosed at 750 mg q8h (every eight hours) for 12 weeks in combination with standard doses of pegylated interferon plus ribavirin, followed by 36 weeks of treatment with pegylated interferon plus ribavirin alone; • Delayed start arm – 4 weeks of treatment with pegylated interferon plus ribavirin, followed by telaprevir dosed at 750 mg q8h for 12 weeks in combination with standard doses of pegylated interferon and ribavirin, followed by another 32 weeks of pegylated interferon and ribavirin alone; • Control Arm – standard doses of pegylated interferon plus ribavirin dosed for 48 weeks.

Vertex is also conducting another large phase III study of telaprevir in combination with pegylated interferon plus ribavirin for the treatment of genotype 1 treatment naïve patients called the ADVANCE trial. The ADVANCE trial is expected to enroll about 1,050 patients in the US, Europe and certain other countries. It is expected that the results from the ADVANCE study will be used to apply to the Food and Drug Administration for marketing approval of telaprevir in the US. • Alan Franciscus is Editor-in-Chief at www. hcvadvocate.org (for more info about how trials work, see p34. ED)

Resource of the month We now have good stocks of ASHM’s pamphlets: • Dental Health & Hep C, • GPs and Hep C,

• Nurses and Hep C, • Pre-Hospital Workers and Hep C. If you are in NSW and would like to order free copies, please visit our website and download our faxback order form.

The Hep C Review

ED63

December 2008

15

feature

Hep C diagnosis:

Writing for The Hep C Review, Bianca Nogrady provides an overview of the hepatitis C testing and diagn

T

he hep C virus is one slippery customer.

Once inside, it sits quietly in the body, causing few or no symptoms that might give its presence away. It can remain unnoticed (asymptomatic) for a long time – up to ten years in some people – even to the point where it might have caused some people serious damage to the liver. The symptoms it does trigger, such as tiredness, abdominal pain and nausea, can cause problems but are so vague they can often be dismissed as simply being the result of other conditions such as the ‘flu, or the stresses of life in general.

What’s more, in the first couple of months after infection, conventional tests don’t always detect signs of the virus, so there is a risk of someone with hep C getting the all-clear. And not all people who receive a positive diagnosis will develop liver disease – some clear the virus within six months of infection without needing any treatment, and others may carry the virus in their body for decades without liver problems.

All this makes diagnosis of hep C difficult, but there usually comes a point in chronic infection – infection that lasts longer than six months after first contracting the virus – where either a doctor or the patient will get the feeling that something isn’t right, and the process of diagnosing hep C begins.

A positive diagnosis can be life-changing so, before even having a test for the virus, a lot needs to be covered in the first consultation with a doctor. Pre-test discussion is the first step in the diagnostic process, and there are a lot of big questions to be asked and answered before a person can give informed consent to have a test such as this one.

Pre-test discussion is a chance for the doctor to prepare someone for the possibility of having the disease, and what this means for the patient, their family, partner, job and life in general. It’s an opportunity to talk about the virus, how it might have been contracted, how to avoid it and why

16

www.hepatitisc.org.au

a person might be at risk. It’s also a time to learn about what testing involves, and what a positive, negative or indeterminate result means.

The initial test for hep C looks for antibodies to the virus in the blood. These are the proteins produced by the immune system when it encounters something foreign in the body, such as a virus or bacteria. There are two antibody tests commonly used to look for the hep C virus – if the first is positive, a second antibody test that works slightly differently is also done, so doctors can be certain.

However, a positive result on the antibody tests simply means the person has been exposed to the hep C virus at some stage. It doesn’t answer the question of whether the person is still infected.

It’s also complicated by the ‘window’ period – in the first three months after infection, it’s not always possible to detect antibodies in the blood, so a negative result on an antibody test doesn’t always mean someone isn’t infected.

Likewise, conditions such as pregnancy, and the use of some IV drugs can lead to a false positive.

In these situations, the result is described as ‘indeterminate’.

Professor Bill Rawlinson, medical virologist at Sydney’s Prince of Wales hospital, says if a doctor suspects a negative result is actually a falsenegative, or a positive result is a false-positive, they can either ask a person come back in three months, or do a second type of test that is much more sensitive.

This test, called the HCV RNA test (HCV qualitative test), actually looks for bits of genetic material from the virus in the blood. This is a much more precise way of testing whether the virus itself is still hanging around causing trouble, although it is not designed to be used as the first-line test for the virus. The amounts of viral genetic material in the blood can be miniscule, so the test involves a technique called PCR (Polymerase Chain Reaction), which amplifies the amount of RNA in the blood sample until it reaches a detectable level.

: a testing time

feature

nosis process.

Professor Rawlinson says the HCV RNA test actually gets two birds with one stone because it can also tell doctors how much virus is in the blood (HCV quantitative test). “If the virus is there, it tells us that the person is chronically infected and secondly, we know how much they’ve got,” he says.

people are at greater risk, what might be done to reduce their risk and the effect of public health measures such as needle and syringe programs.

But the results are used only for this research, do not contain people’s full names or addresses and are not given to anyone else.

The HCV RNA test also allows virologists to find out what type of hep C virus a person has (HCV genotype test). There are six known genotypes of hep C found around the world – genotypes 1 and 3 are the most common in Australia – and each responds differently to treatment. “Genotype 1 is more therapy-resistant so you need to treat for longer and at higher doses,” Professor Rawlinson says, whereas genotype 3 is more responsive to treatment.

This process of notifying health authorities is essential for public health. It allows authorities to know how much disease is in the population, how that is changing over time, which groups of

• Bianca Nogrady is a health and medical writer: www.biancanogrady.com/ NSW Hep C Helpline – 9332 1599 (Sydney) or 1800 803 990 (NSW regional).

National Hepatitis Infoline – 1300 HEP ABC (1300 437 222).

Stock photo - image via Google Images

Once a test result has been confirmed as being positive, which can take around two weeks, the results are not only sent back to the doctor, but also to the state health department.

A positive result can be devastating, so a lot of effort goes into helping people cope with a positive result from a hep C test. Apart from discussing the situation in terms of referral and treatment, this stage of post-test discussion is essential to equip people newly diagnosed with the disease with all the information and support they need. People with hep C may feel isolated, but they are not alone – there is a wealth of resources to help them out, including state-based hep Councils in each state and the national Hepatitis Infoline.

The Hep C Review

ED63

December 2008

17

my story

Opal Miner’s story:

part 2 a welcome surprise

M

y story was printed in Edition 44 (March 2004) as “The Opal Miner.” I found the edition the other day, and read my article again.

I realised that I had left out maybe the most important thing – the effects some people get from starting treatment for hep C. I started treatment for my hep C genotype 1B in 2003. The nurse at John Hunter Hospital was a bit bothered that I had severe psoriasis (a disorder that affects the skin and joints, commonly causing red, dry, scaly patches on the skin).

I have to say that my psoriasis was so bad that the year before, I had to have treatment in Sydney for it. I had to take light-sensitising medication and then have UVA treatment every second day for one month to get better.

On treatment, I noticed that my psoriasis got worse the first month because my skin got so much drier than before. But to my big surprise, the psoriasis spots that I had started to disappear after six months. I was on a one year treatment because I had genotype 1B and at the end of treatment, not only was my hep C gone, but my psoriasis was also cleared.

So my advice is that even if you have psoriasis, or other skin conditions, don’t let that stop you from a really good chance to get well.

The Opalminer, NSW

18

www.hepatitisc.org.au

Stock photo - image by Gene McDevitt via www.flickr.com

She told me that the treatment with interferon could worsen my condition, but I told her that my liver was more important than my skin problem.

Together with the doctor, we decided to start me on the treatment anyway.

feature

Drug Trends Bulletin: patterns of drug use

Hep C is transmitted primarily through sharing of injecting equipment. Drug Trends Bulletin provides valuable data on patterns of drug use among people who inject drugs.

S

• Rates of public injecting, daily injecting, needle/syringe re-use and receptive sharing remained stable over the period 2003 to 2007.

ince 1995, a collaboration of Australian needle and syringe programs have conducted annual sentinel surveillance surveys of HIV and hep C prevalence and risk behaviours among injecting drug users.

Overall results from the 2008 Australian NSP Survey suggest that while heroin and methamphetamine remain the drugs most frequently injected among NSP Survey respondents across Australia, patterns of drug use vary between states and territories. Heroin was the most common drug last injected in NSW, VIC and the ACT, while methamphetamine injection was more predominant in QLD, SA and WA. Morphine was the drug last injected by the majority of NSP Survey participants in the NT, while methadone was more commonly injected in TAS than in any other state or territory.

Following are the key points taken from the October 2008 bulletin: • Between 2003 and 2007, approximately one third of Australian NSP Survey participants reported heroin as the last drug injected and a further third reported methamphetamine as the last drug injected.

• Heroin was the most common drug last injected in NSW, VIC and the ACT, whilst methamphetamine was most commonly reported in QLD, SA and WA in all years since 2003.

• The proportion of participants reporting a pharmaceutical opioid as the last drug injected increased nationally, from 9% in 2003 to 14% in 2007. Pharmaceutical opioid injecting was more common in the Northern Territory than in all other jurisdictions, while the increase in prevalence between 2003 and 2007 was most notable in NSW, QLD and WA. • The proportion of respondents reporting methadone as the last drug injected increased from 6% in 2003 to 10% in 2007, and the proportion reporting buprenorphine as the last injected increased from <1% to 5% during this period.

• Both the median age of participants and the median duration of injecting increased over the period 2003 to 2007. This was accompanied by a decline in the proportion of young people and the proportion of new initiates in the survey sample.

As discussed in the December 2007 Drug Trends Bulletin (Fetherston et al, 2007), both the IDRS and the NSP Survey provide valuable data on patterns of drug use among injecting drug users over time. While both surveys have different aims and methodologies, the consistencies between the two datasets validate the contribution that they both make to Australia’s sentinel surveillance system.

The full bulletin can be viewed or downloaded from www.hepatitisc.org.au/edu/documents/ 08DrugTrendsBulletin.pdf • This article abridged from the 2006 and 2008 editions of Drug Trends Bulletin, prepared by Jenny Iversen and Lisa Maher, National Centre in HIV Epidemiology and Clinical Research, UNSW, on behalf of the Collaboration of Australian Needle and Syringe Programs.

The Hep C Review

ED63

December 2008

19

my story

From eucalyptus leav A

s I board my bus, toque (or beanie to us Aussies) in hand, I head to what some people refer to as Canada’s most infamous postcode – the Downtown Eastside (DTES) of Vancouver. For me, it’s the base from which I work as a hep C research coordinator – at the Pender Community Health Centre.

Pender is a multidisciplinary clinic with its main focus being to provide primary care and dependence services like counselling, methadone maintenance but along the way it has implemented an award winning hep C research program.

To set the scene, the DTES is a 10 block area roughly the size of Kings Cross and is home to a large marginalised population. Many Downtown Eastsiders are living below the poverty line and are struggling with mental illness, disability, dependence, homelessness, HIV and hep C. Almost 10,000 injecting and/or illicit drug users reside in the area, and open drug use on the streets and in the back alleys is commonplace.

Even for a Sydney-sider who has worked in the

inner city, such open drug use was initially quite confronting, but now it’s part of the everyday comings and goings of this unique community.

I arrived in Vancouver in mid 2007, to join the hep C research program. It consists of weekly hep C peer support groups and a multidisciplinary clinical and research team working together to increase hep C education, engagement in care, treatment uptake and treatment adherence amongst clinic patients (many of whom are past and present illicit drug users).

This model is based on similar programs in Europe. Our team is made up of an infectious disease specialist, family physicians, nurses, counsellors and university employed researchers as well as other ancillary health professionals as required, e.g. nutritionists. Our clinic has quite a high success rate for treating past and present illicit drug users for hep C compared to other settings. Other centres require a certain amount of clean time before they will consider treating patients, but our clinic is more flexible in its approach.

Stock photo - image via Google Images

20 20

www.hepatitisc.org.au www.hepatitisc.org.au

my story

ves to maple trees Apart from medical and psychological reasons, social stability is more important in deciding to initiate treatment than drug abstinence (with the exception of alcohol). For example, stable housing and financial support are required prior to treatment. This is because side effects of the combination treatment make it necessary for patients to have somewhere to go and rest. We have many illicit drug users who are on treatment and maintain compliance to complete the recommended course of treatment.

and information about hep C to all patients interested) and in a local Ally Health Fair, which was set up by one of the local DTES community groups. Working in the DTES has given me the opportunity to see first hand that although a person may be deemed an unsuitable candidate for hep C treatment – due to factors such as continuing drug use – in the right environment, coupled with appropriate support mechanisms, improving health outcomes for these patients is possible.

But what do I actually do as a HCV researcher in the DTES? With the help of the team, I coordinate a number of observational and interventional (drug) studies for patients who are hep C positive or co-infected with HIV. Most of my studies involve conducting interview-style questionnaires with patients to gather information about past or present drug use, quality of life, adherence to HCV treatment (if applicable) and, most importantly, patient feedback on what they see as being barriers to accessing or initiating treatment.

• Elizabeth Knight is a researcher with the Pender Clinic hep C research program. Also see news item, “Quebec rejects safe injecting facility,” p6.

Downtown Eastside laneway - image supplied by Elizabeth Knight.

For those patients who have not yet initiated treatment or engaged in our support group, it is also a chance to provide some initial education on HCV and the available options. Patients may not necessarily jump in for treatment straight away but sometimes our discussions plant a seed that begins to grow over time. Some of our patients who are now on treatment had such discussions two or three years ago.

I have also had the opportunity to be involved in some local and global health promotion initiatives including World Hepatitis Day (where we set up a stand in the clinic waiting room to provide free coffee and snacks

In British Columbia, the guidelines for hep C treatment still require people with chronic infection to show persistent elevated ALT levels on two occasions, sixmonths apart or evidence of advanced liver disease, via liver biopsy, to be eligible for government coverage. These requirements are longer necessary in Australia.

The Hep C Review

ED63

December 2008

21

feature

Social determinants of

This article by Richard Wilkinson and Michael Marmot introduces Social determinants of health: the sol

E

ven in affluent countries, people who are less well off have shorter life expectancies and more illnesses than the rich. Not only are these differences in health an important social injustice, they have also drawn attention to some of the most powerful determinants of health standards in modern societies. In particular, they have led to a growing understanding of the sensitivity of health to the social environment and to what have become known as the “social determinants of health”.

• • • • • • •

Social Determinants of Health: the Solid Facts is a booklet that outlines the most important parts of this new knowledge. The ten topics covered are: • the social gradient • stress • early childhood

Health policy was once thought to be about little more than the provision and funding of medical care; the social determinants of health were discussed only among academics.

Social exclusion Life is short when its quality is poor. By causing hardship and resentment, poverty, social exclusion and discrimination cost lives.

What is known: Poverty, relative deprivation and social exclusion have a major impact on health and premature death, and the chances of living in poverty are loaded heavily against some social groups.

Absolute poverty – a lack of the basic material necessities of life – continues to exist, even in the richest countries. The unemployed, many ethnic minority groups, guest workers, disabled people, refugees and homeless people are at particular risk. Those living on the streets experience the highest rates of premature death.

Relative poverty means being much poorer than most people in society and is often defined as living on less than 60% of the national median income. It denies people access to decent housing, education, transport and other factors vital to full participation in life. Being excluded 22

www.hepatitisc.org.au

social exclusion working conditions unemployment social support drug dependence food transport

Each chapter contains a brief summary followed by a list of implications for public policy.

As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we need to feel valued and

from the life of society and treated as less than equal leads to worse health and greater risks of premature death. The stresses of living in poverty are particularly harmful during pregnancy, to babies, children and old people. In some countries, as much as one quarter of the total population – and a higher proportion of children – live in relative poverty.

Social exclusion also results from racism, discrimination, stigmatisation, hostility and unemployment. These processes prevent people from participating in education or training, and gaining access to services and citizenship activities. They are socially and psychologically damaging, materially costly, and harmful to health. People who live in, or have left, institutions, such as prisons, children’s homes and psychiatric hospitals, are particularly vulnerable.

The greater the length of time that people live in disadvantaged circumstances, the more likely they are to suffer from a range of health problems, particularly cardiovascular disease.

People move in and out of poverty during their lives, so the number of people who experience poverty and social exclusion during their lifetime

feature

f health

lid facts, a discussion paper from the World Health Organization. appreciated. We need more social interaction within society. We need friends, the feeling of being useful, and we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.

Stock photo - image by Carf, via www.flickr.com

By tackling some of the material and social injustices, social policy will not only improve health and wellbeing, but may also reduce a range of other social problems that are associated with ill health and are rooted in some of the same socioeconomic processes.

In ED61, we began our coverage of Social Determinants of Health. Over the following editions of The Hep C Review, we are featuring the remaining topics (far left) that underpin this social viewpoint. ED

is far higher than the current number of socially excluded people.

Poverty and social exclusion increase the risks of divorce and separation, disability, illness, dependence and social isolation and vice versa, forming vicious circles that deepen the predicament people face.

Specific policy implications: 1. All citizens should be protected by minimum income guarantees, minimum wages legislation and access to services.

As well as the direct effects of being poor, health can also be compromised indirectly by living in neighbourhoods blighted by concentrations of deprivation, high unemployment, poor quality housing, limited access to services and a poor quality environment.

2. Interventions to reduce poverty and social exclusion are needed at both the individual and the neighbourhood levels.

3. Legislation can help protect minority and vulnerable groups from discrimination and social exclusion.

Policy implications Through policies on taxes, benefits, employment, education, economic management, and many other areas of activity, no government can avoid having a major impact on the distribution of income. The indisputable evidence of the effects of such policies on rates of death and disease imposes a public duty to eliminate absolute poverty and reduce material inequalities.

4. Public health policies should remove barriers to health care, social services and affordable housing.

5. Labour markets, education and family welfare policies should aim to reduce social stratification. â&#x20AC;˘ Abridged from Social Determinants of Health: The Solid Facts (second edition), World Health Organization 2003.

The Hep C Review

ED63

December 2008

23

feature

Still the boy next door Michael Dwyer reports on an Australian rock musician who is dealing with dependence and hep C treatment.

G

uitarist Rowland S. Howard is recently returned from eight years in hell. Sitting on the porch of a St Kilda cafe, he’s still tender enough from the experience to hide his water-blue eyes behind dark glasses.

The waiter addresses him by name with a mixture of respect and affection and helps him light the first in a series of cigarettes perched in a trembling hand.

“I’m a person who is totally governed by my emotions. I just don’t have the ability to hide what I’m feeling,” Howard says. “I would just walk around the streets of St Kilda sobbing. If someone asked me how I was, I would just break down, unable to speak. It was impossible for me to work.”

The one-time member of Nick Cave’s Birthday Party shares the agonies of his recent past with brutal candour, beginning with the end of his marriage, separation from his young stepson and the death of his mother.

“My drug addiction became the worst it has ever been,” he says. “I didn’t want to wake up in the morning any more. It was just too painful to keep on.”

Stock photos - images via Google Images

For about a year Howard stayed in bed, wrestling the depressive side effects of hep C medication.

He stopped writing songs, playing the guitar, seeing friends.

24 24

www.hepatitisc.org.au www.hepatitisc.org.au

“The good thing is that my life finally became so intolerable that I could no longer be bothered to go out and buy drugs,” he concludes with a parched cackle that shakes his wraithlike body.

“As a consequence, in the last year and a half, a lot of good things have started to happen to me.”

He counts among them an invitation to London to help celebrate the work of Lydia Lunch, his frequent collaborator from New York’s nowave fringe. He’s also “amazed” at his looming Spiegeltent gig on the Sydney Opera House forecourt.

From the Birthday Party to Crime & the City Solution to These Immortal Souls, Howard’s howling blues guitar technique, his gallows outlook and uncompromising attitude have forged a hallowed cavern in the rock underground.

“Yes. I have made a life of it,” he agrees, with palpable reservations. “My particular life choices that have nothing to do with creativity have meant that that life has not always been easy.

But, yes, I can usually work when I want to.”

A gripping and witty solo performer, Howard has seen his profile rise in Melbourne in the past 18 months. He has begun to play shows, maintain his own MySpace page and talk up a new album under construction, his first since Teenage Snuff Film in 1999.

• By Micheal Dwyer.

Abridged from The Sydney Morning Herald, 1 Nov 2008.

opinion

Injecting drug users with hep C: should they be offered treatment?

Emerging data indicates that injecting drug users can be treated successfully, but should drug users be offered treatment? asks UK Professor of Hepatology, Graham Foster.

H

Furthermore, refusing to treat injectors may promote a message that chronic hep C infection is not a ‘serious’ healthcare concern and [attention to safer injecting practices which reduce transmission] is unnecessary. Hence, one might argue that treating injectors and persuading the injecting community that hep C is a very significant illness may have benefits that extend beyond those who are actually receiving therapy.

epatitis C is transmitted readily by blood-contaminated needles, syringes or injecting paraphernalia, leading to high rates of infection in drug injectors – typically, approximately 50% of people who inject have hep C. Thus, injecting drug users constitute a large reservoir of chronic hep C infection.

Given that a large proportion of people with chronic hep C are active injecting drug users the question arises as to whether they should be offered antiviral therapy?

There are some ‘obvious’ objections to such an approach. Drug users are engaged in an illegal activity that has led to the acquisition of a virus which is expensive to eradicate. In a cash-limited healthcare system some may question whether or not such people ‘deserve’ to be treated.

If people with hep C and ongoing drug use are treated, then their lifestyle may put them at risk of re-infection, thereby nullifying any benefits.

Furthermore, drug users may have chaotic lifestyles that make regular attendance at treatment centres unlikely and compliance with therapy is expected to be reduced.

As injectors may be at increased risk of early death from the complications of drug abuse and because chronic HCV infection is a slow disease, eradicating HCV may be seen as a ‘low priority’ and it might be preferable to focus upon other health care priorities. Many authorities have therefore taken the view that ‘active injectors should not be treated’ and should be ‘forced’ to stop using illicit drugs before being considered for antiviral therapy. Whether such a position is motivated by medical concerns or by a moral compass that refuses to consider IDUs as ‘worthy’ of treatment is not always entirely clear.

Given that injectors are engaged in an activity that is likely to transmit HCV it is possible that treating them and eradicating their virus might reduce onward transmission.

A proportion of injectors with hep C will inevitably present end-stage liver disease and will present with the complications of cirrhosis, including variceal bleeding and liver cancer. Such complications require emergency treatment, which is invariably provided. Because the management of end-stage liver disease is expensive, and as treating hep C before complications develop is highly cost-effective, those who advocate not treating active injectors are supporting a policy whereby cheap therapies are discarded in favour of more expensive ones.

The arguments in favour of treating injecting drug users are based upon a growing body of evidence which remains incomplete. Most of the studies have been performed by enthusiasts with an interest in treating injectors, and the total number of patients studied remains relatively small.

Nevertheless, emerging data indicates that injecting drug users can be treated successfully in specialist centres where appropriate facilities are available. The challenge for those looking to improve the care offered to injecting drug users with viral hepatitis is to ensure that all those who choose to inject drugs have access to services delivering antiviral therapy.

Without such service provision, many injecting drug users will develop avoidable complications of end-stage liver disease.

• Abridged from Injecting drug users with chronic hepatitis C: should they be offered antiviral therapy? Foster, GR. Addiction, 103, 1412–1413

The Hep C Review

ED63

December 2008

25

feature

Former inmate’s mission to break Aboriginal cycle

John Van Den Dugen turned his life around after a six-month stint behind “the gates to hell’’, Goulburn jail, writes Ewa Kretowicz.

J

ohn van den Dugen, the 2007 ACT Young Australian of the Year, says a moment of clarity helped him give up drugs and find a job he loves. ‘’I was looking at my son and I thought, is this what my son is going to be living? This is bullshit, and I made a decision then and there to change,’’ he said.

Aboriginal and Torres Strait Islanders are 13 times more likely to be in prison than other Australians, and four times more likely to catch hep C. More than 20 years on from a royal commission report, the rate of Aboriginal imprisonment has increased to a quarter of the prison population.

Mr Van Den Dugen, a 26-year-old Canberran, has battled his dependence, relapsing several times in the past eight years but has always sought rehabilitation.

‘’I have been clean for two years,’’ he said.

The community advocate says the ACT needs more support systems and more treatment facilities to combat the over-representation of indigenous people in jail. ‘’If they don’t get treatment when they want it [they] get caught up in the drug and crime cycle again,’’ he said.

Mr Van Den Dugen was joined by Michael Moore (Public Health Australia), Steve Larkin (Australian Institute for Aboriginal and Torres Strait Islander Studies) and Mick Gooda (Cooperative Research Centre for Aboriginal Health) to launch a report on Aboriginal prisoner health recently. The report concluded investing in the health and wellbeing of prisoners and their families would slash Aboriginal imprisonment rates.

Mr Gooda said the research aimed to improve holistic health in the indigenous population. It concluded prevention and early-intervention programs designed to prevent offending and imprisonment and post-release services designed to help prisoners reconnect with their families and communities could slash recidivism. ‘’Given the recent lack of success in national efforts to reduce Aboriginal and Torres Straight Islander imprisonment rates it is essential that policy makers understand what works and what doesn’t work in cutting imprisonment and reducing recidivism.’’

Stock photo - image via Google Images

Mr Van Den Dugen said the time for talking was through.

26

‘’Unless we do something about it now it’s just going to get worse. I think it’s time to stop talking and actually start to do something ... we’re a culture that’s nearly run out,’’ he said.

• Ewa Kretowicz is with the The Canberra Times. Abridged from www.canberratimes. com.au (21 Aug 2008) via C-Network

www.hepatitisc.org.au

Tackling the cause, not result of crime

opinion

Hep C affects around 55% of Victorian prisoners. To improve their chance for rehabilitation, we need to tackle homelessness, poverty, mental health, drug dependence and unemployment, writes Hugh de Kretser.

V

allocated only $37 million to tackle these challenges, with only a fraction of that going towards early intervention and prevention initiatives – only $24 million was allocated to family violence prevention and victim support.

ictoria’s prison population has increased dramatically in the past 10 years. You might think a 60% increase reflects an increase in crime, but crime rates are falling.

Victoria is the safest state in Australia.

The overall crime rate has been falling for seven consecutive years, and is down 23% since 2001.

These are good initiatives but the spending is dwarfed by the $591 million investment in more prisons.

So, if crime is down, why are prison numbers up?

Stock photo - image via Google Images

A main reason is that courts are imposing longer sentences. Over the six years to June 2006, the average prison sentence increased by 18%.

More prisoners and longer sentences do not address the causes of crime or the cycles of re-offending. Prisons are supposed to correct offending behaviour.

We need to do more to tackle homelessness, poverty, mental health, drug dependence and unemployment. We need to remove barriers to employment for those with criminal records where the record has got nothing to do with the job.

Yet, ABS statistics confirm that 53% of prisoners have been in prison before. More than half of the time, we fail to prevent re-offending.

For those who end up in prison, we need to do more to promote their rehabilitation. Properly resourced prisoner rehabilitation programs, postrelease support and parole have been shown to reduce crime.

The complex problems that lead offenders to prison are not properly dealt with while they are inside. Prison breeds violence and criminality. It removes people from their families and support networks, and exacerbates the problems that put them in prison.

Shocking amounts of taxpayer money are spent on running our expanding prison system. Each prisoner costs about $80,000 per year. Victoria spends over $500 million annually on its prisons.

This year, Victoria announced it is pouring in an additional $591 million for more capacity to cope with the increasing inmate numbers.

To put this into perspective, we are told that alcohol abuse and alcohol-related violence is a major social issue. Yet, this year’s budget

Our expanding prison system is draining funds away from crime prevention programs, non-custodial sentencing options and strategies that reduce social and economic disadvantage. This spending could be more sensibly used on addressing the causes of crime.

An expanding prison population is an incredibly expensive and ineffective way to tackle crime.

Victorians should be demanding that their politicians adopt better criminal justice policies.

Addressing root causes of crime and promoting prisoner rehabilitation is the smarter option.

• Hugh de Kretser is the executive officer of the Federation of Community Legal Centres.

Abridged from The Herald Sun (7 July 08) via www.news.com.au

The Hep C Review

ED63

December 2008

27

my story

Mick’s story: getting r I

t’s so hard to place feelings I have into a particular point in time because how I feel now is definitely not how I felt six months ago, or a year ago, or how I felt 18 years ago.

I’ll do my best to remember how it was way back when I was first tested in the early 90s. I was told by a doctor located near the rehab I was in that I had hepatitis non A and non B. I remember thinking how lucky I was not to have either but that changed after I learned the facts back in rehab.

There were no NSPs when I was using, glass fits were common, one per bunch of guys. There always used to be “the keeper of the fit” between whacks and their responsibility was to look after it, sharpen it up on a matchbox flit ready for next time. You were very popular if you had a fit.

Towards the end of my using career NSPs were just getting up and running in Wollongong. I could not accept, though, that a government service was giving out free fits and other paraphernalia. They were undercover drug squads, for sure.

28

www.hepatitisc.org.au

One day we got so desperate for a fit we JUST HAD TO go to an NSP and run the risk – we thought – of being busted.

I remember asking the guy at the counter for two syringes and then waiting for the SWAT team to arrest me. It didn’t happen that day, anyway. Cut a long story short, after numerous visits to the local NSP and never being busted, I got to know the guys who worked there and as a result, I was referred into treatment when I had enough of doing “personal research”.

That was almost 18 years ago. I can safely say that the local NSP certainly played a major role in saving my life.

How did I feel while contemplating hep C treatment? Like I had a pack on my back filled with unanswered questions and bad experiences.

I’d been carrying hep C around for 20-plus years.

After knowing a few people who entered into treatment in the mid 90s, I decided never to take it on. They suffered badly. But always in the back of my mind was the thought of what was going

my story

rid of my backpack to kill me: being hit by a car? drowning while surfing? liver failure? I quietly preferred the first two options. I’d never felt the symptoms of the virus, I think. Yes, I was tired a lot, but so were people without the virus.

I spun out a few times, particularly with the people I love the most, and took off a few times up and down the coast to get away for a while.

I must admit, looking back now it wasn’t that difficult. However, that is how I feel NOW after just finding out that I have cleared the virus.

I wonder how I would feel about the level of difficulty with treatment if I didn’t clear the virus?

At any rate I take my hat off to everyone who goes through the treatment journey!

Mick, NSW

Stock photo - image by Melissa Maples, via www.flickr.com

What made me decide to do the treatment? I finally took that pack off my back after it got so heavy I couldn’t carry it around any more. Having good knowledge of the current combination treatment and the success rates; finding out the side effects were dramatically decreased in comparison to the early treatments. All of that was important; however, the most significant thing that propelled me into treatment was watching my father-in-law suffer the horrific and painful process of dying of liver failure (unrelated to any viral infection). There was no way I was going to put my family through watching me go through that. The “being hit by a car” or “drowning in the surf” or hep treatment options were looking good. The Wollongong Clinical Nurse Specialist Hepatology Coordinator and the local sexual health doctor gave me a tremendous amount of support and encouragement to take on the treatment – so I did.

On treatment, all was going well until the second month. I started feeling depressed a bit, well, a fair bit. I still kept surfing and staying active; involved in other personal and professional stuff.

I found it difficult, though, trying to be normal in front of people I call “the discriminators”. I did get heaps of support through family, some friends and some work colleagues and this was a God-send. The local treatment Clinical Nurse Specialist was an absolute treasure and so valuable to me and my partner.

The TheHep HepCCReview Review

ED63 ED63

December December2008 2008

29 29

30

www.hepatitisc.org.au

The Hep C Review

ED63

December 2008

31

opinion

Battle against drugs ne

While the United Nations battles the world’s drug problem, it needs to ensure that drug users are helped

I

n 1998, the United Nations held a general assembly special session on drugs, setting 2008 as the target date to eliminate, or significantly reduce, world drug production and use. Well, here we are in 2008, and while we’ve certainly come a long way, drugs still remain a worldwide problem.

The elimination of drugs is an ideal many would like to see achieved, but we need to approach drug issues in a realistic and pragmatic manner.

Fortunately, the next UN initiative sees the potential to formulate realistic goals and some positive changes for the future, including changes to the drug control conventions which govern global drug control, and to which many countries (including Australia) are signatories.

Why do we need to make changes to our global drug control efforts? To start with, the three drug control conventions currently have a heavy law enforcement focus. While this is a key aspect of any comprehensive drug control effort, law enforcement is just one of many areas that need to be engaged when tackling drug problems.

In addition, it is quite concerning to me and many others that human rights, and their protection, are only [mentioned] once across all three drug control conventions.

Frankly, this is not good enough, especially when considering that those with drug problems are often subjected to severe stigmatisation and discrimination in communities across the world. To put it simply, we have to update the conventions to reflect the most effective approaches of tackling the world’s drug problem.

Both Australia and New Zealand have balanced and pragmatic drug policies compared with many other regions in the world.

Why do we do this? Because it works: our national drug strategies are also among the few that are subjected to comprehensive evaluations.

As a result we have long had an evidence-based approach to formulating our drug strategies.

This has led to declining levels of drug use and overdoses, and the maintenance of one of the lowest rates of HIV amongst injecting drug users.

Stock photo - image by bcmacsac1 via www.flickr.com

Even the executive director of the United Nations Office on Drugs and Crime, Antonio Maria Costa, has himself said that “tighter controls in one

region, or on one product, produce a swelling of activity elsewhere. As a result of this balloon effect, the problem is displaced, but not solved.”

32

www.hepatitisc.org.au

opinion

eeds realistic approach

d to overcome problems rather than be further harmed, writes Dr John Herron.

We have a global responsibility to share our knowledge and success with other countries and to learn from the approaches of other nations.

In our region, non-government organisations (NGOs) provide many services within the alcohol and other drug sector. Inevitably, NGOs are confronted with many challenges from being under-resourced and overworked – which makes attracting and keeping staff a difficult task for many agencies. Despite this, or perhaps because of these circumstances, many NGOs often offer the most innovative treatment approaches.

Therefore, it is unfortunate that the expertise of NGOs has not been utilised more in important decisions made at the UN level on drug issues.

This time, however, a historic achievement was made recently when the UN actively sought input from NGOs in a review of drug control since 1998. NGOs across the globe reflected on what has been achieved in the past ten years and provided recommendations on how to improve and strengthen these conventions, as well as ways to enhance NGO involvement in drug policy at the government and UN level.

The Australian National Council on Drugs worked with the New Zealand Drug Foundation to develop a report outlining the response from our region.

Our regional report confirmed what many of us already knew: NGOs have much to offer including frontline experience, independent perspectives and innovative strategies for making our drug policies even more effective.

I was very pleased and impressed that so many NGOs across the sector participated in this project in the face of such great time and resource limitations.

Why did they do this? For the greater good. It is something which drives the NGOs in this sector, and they wanted the opportunity to influence global decision making and to promote the successes of our region in the hope of achieving better outcomes for others in the world.

Regional representatives, including a delegation from Australia and New Zealand, recently met at an international forum in Vienna to propose new drug policy resolutions. The forum concluded that equal weighting should be given to supply and demand reduction, and that each country should consider drug misuse primarily as a health issue.

The importance of such resolutions should not be underestimated – they have the potential to change the face of drug issues on a global scale.

There seem to be so few opportunities to celebrate our success within the drug sector – numerous challenges will always be apparent.

However, what we have seen recently has been no small feat, and I congratulate the UN and most of all the NGOs, which gave their time and resources to participate.

I now wait in anticipation for 2009 when a highlevel UN meeting of government delegates will meet to discuss the last ten years of drug issues, including a very important NGO perspective.

I urge them to adopt a realistic and groundbreaking approach to battling the world’s drug problem, to ensure that the many victims of some current drug control strategies are helped to overcome problems rather than be further harmed.

• Dr John Herron has been a surgeon, a President of the Australian Medical Association, a Senator in the Parliament of Australia, a Minister for Aboriginal and Torres Strait Islander Affairs, our Ambassador to Ireland, and is the current Chair of the Australian National Council on Drugs.

Abridged from The Australian, 23 Aug 08, via the ADCA Update email list.

What do you think about this issue? Do you want to share your views with the readership?

See our contact details on page 3. ED

The Hep C Review

ED63

December 2008

33

feature

Hoops and hurdles New drugs need to pass several stages in a thorough development process before they hit our pharmacy shelves.

F

drugs are tested in cell culture systems to assess whether they inhibit replication of a virus.

Phase II human trials – if phase I trials reveal no significant safety concerns, then larger trials with longer duration of therapy are conducted in volunteers who have the medical condition that the drug aims to treat. These studies are used to closely examine efficacy and to gather further safety data, as some side effects may only be evident with more prolonged use.

Animal studies – once there is evidence of

Phase III human trials – if phase II trials

or a new treatment to become licensed for use, there are several stages of testing to assess both the safety and effectiveness of the therapy.

Cell culture systems – often new antiviral

activity in cell culture systems, the safety of the drug is initially examined in animal studies.

Phase I human trials – if animal studies have

• The above article is reprinted from ED57, p21. It was originally abridged from a trial press release, sourced from the internet.

NB: a cohort is a group of people, all having some basic similarity, e.g. were born in the 60s, or do not drink alcohol.

Stock photo - image via Google Images

not demonstrated safety concerns, the next step is to examine safety in humans. This is generally performed in a ‘cohort’ of healthy volunteers and involves giving the drug for a short period of time (days or weeks) and increasing the dose in a stepwise fashion to see if any side effects are experienced at different dosing levels. If significant safety concerns are evident at lower doses, the subsequent higher doses are not given.

provide further evidence of antiviral efficacy and no significant safety concerns, then even larger trials are conducted. These trials generally compare the new drug to the “standard of care” treatment. For example, if a polymerase or protease inhibitor demonstrates promise in phase II trials, it would then be compared to pegylated interferon and ribavirin therapy in phase III trials.

34

www.hepatitisc.org.au

feature

Worried about cancer?

Cut back on alcohol Did you know that the risk of liver cancer is ten times greater in those who drink and smoke? Melanie Haiken writes about how we can take better care of ourselves.

• It increases the risk of breast cancer by increasing levels of oestrogen, insulin, and other hormones that fuel cancer.

Consider these statistics:

• It increases oesophageal and mouth cancer by damaging sensitive tissues (it also increases the risk from smoking by the same route).

• Women who drink even a small amount of alcohol daily – such as half a glass of wine – increase their risk of breast cancer by 10%; women who have three drinks a day increase their risk by 30-40%.

• Two or more drinks a day increases the risk of upper digestive tract cancers (mouth, larynx, oesophagus) by 50-75%.

• The risk of liver cancer is ten times greater in those who drink and smoke.

I don’t know why we’re not talking more about the alcohol-cancer connection. When my father was dying of oesophageal cancer – a type of cancer closely linked to alcohol consumption – I don’t remember the doctor asking my dad about drinking, or even mentioning the subject. My dad was not an alcoholic – far from it (I should know, as my mother was). But he loved his evening glass or two of red wine, even going as far as making his own wine as a hobby. It makes me sad to think that a warning about this connection might have kept him with us longer.

• It metabolises into a chemical called acetaldehyde, also known as the “hangover chemical,” which leads to cancer both by damaging DNA and by preventing cells from repairing the damage.

• It damages the liver, making it more vulnerable to liver cancer.

For some reason, this news is getting out much more effectively in the UK than it is here in the US, where doctors seem hesitant to highlight the risks of drinking. Cancer Research UK has a great summary of the evidence that alcohol causes or contributes to cancer, and British and Australian researchers are at the forefront of much of the research on the topic.

Weighing the risks Of course, it’s also true that red wine appears to lower the risk of heart attack (though this appears to apply more to men than women) and that a chemical found in red wine, called resveratrol, may be protective against cancer.

How does alcohol cause cancer?

How to balance the pros and cons? Experts say people at risk for cancer, because of a family history or other factors, should cut down on drinking or stop altogether. Those at risk of heart disease, on the other hand, might find a drink or two a day beneficial, but should talk to their doctor about balancing risks and benefits. And those interested in the resveratrol research should consider a supplement rather than obtaining the antioxidant from wine.

Drinking seems to contribute to different types of cancer in different ways:

• By Melanie Haiken, www.caring.com via Google alert.

I live in Marin County, California, yet I didn’t know until recently about research conducted at the University of San Francisco three years ago showing that the high breast cancer rate in Marin was likely due to alcohol consumption.

The Hep C Review

ED63

December 2008

35

Stock photo - image via Google Images

I

f you’re worried about cancer – either for yourself or your family – you might want to cut back on drinking, or suggest that loved ones do so. That’s the conclusion of researchers across the USA and in the UK, and of the US government, which now lists alcohol as a known carcinogen. Yet for some reason, regardless of what the studies reveal, this message just isn’t getting the attention you think it should get.

feature

Ensuring we get a fair deal A recent UK report indicates that people with hep C face ill-informed companies who move the goal posts and add huge amounts to insurance premiums, writes Kate Hughes.

I

f people with HIV/AIDS were faced with ignorant and inconsistent treatment by the protection industry, there would be uproar.

The word “discrimination” would be hurled about – and fair enough. Thankfully, the way HIV positive life assurance customers are treated has improved greatly over the past few years, with far more effective guidelines and regulations enforced among protection providers.

Hep C can permanently damage your liver and seriously affect life expectancy. But people can and do recover, life expectancy can return to near-normal levels, and life can carry on as usual, although people cured of their hep C will always carry signs of the disease in their bloodstream.

Unfortunately, life assurance companies don’t see it like that, and will treat all people who are hep C antibody positive the same as each other.

But a new report indicates that people with hep C – about 500,000 in the UK – face ill-informed companies who add huge amounts to premiums.

Chris Morgan of Compass says: “The fact there are no guidelines for the way hep C is treated, and that each company has different ideas about how to treat clients, is remarkable.”

Just as the Department of Health is set to launch a hep C awareness campaign, research by the independent financial advice firm Compass, has found that there is no consistent approach on hep C related premiums. Some providers add 50%, some 200%. And 90% of life assurance providers were unable to give any clear information on the disease, the report found.

Charles Gore of the Hepatitis C Trust agrees.

“Hepatitis C is a disease that disproportionately affects the underprivileged and vulnerable.

Having the insurance industry compound that is unacceptable,” he says, adding that protection providers have failed to keep up with advances in hep C treatment. “We must have some clear, standardised guidelines.”

• By Kate Hughes, The Independent, 27 September 2008. Abridged from www. independent.co.uk via google alerts

Stock photo - image by mushroomandrooster.net via www.flickr.com

Also see news article about Irish hep C insurance scheme, p8.

36

www.hepatitisc.org.au

feature

Hepatitis E afflicts Ugandans returning after war Jack Kimball provides insight on hepatitis E, a virus that is almost unknown in Australia.

A

medic gently lifts the eyelids of sixyear-old Peter Morris Opoka at a clinic in a camp for people displaced by two decades of war in Uganda.

The yellowish hue of Opoka’s eyes gives away the presence of the highly infectious hepatitis E virus, which has killed more than 120 people and infected some 8,000 more in northern Uganda since last year. The infection is an added problem confronting hundreds of thousands of Ugandans as peace allows them to return to homes in a region devastated by a rebellion by the Lord’s Resistance Army (LRA).

“There is nothing back home for these people,” said Julie Caillet, public health manager for the aid agency Oxfam.

“What makes fighting this disease so hard is the long incubation period. People will be spreading it in the village and not even know,” says health officer Samuel Opiyo in Mucwini camp, some 470 km from the Ugandan capital.

The task is complicated by devastated infrastructure in northern Uganda. Schools, clinics and water-holes are in ruins.

In Kitgum town, Grace Ayoo feels she is one of the lucky ones after recovering from Hepatitis E and giving birth to a healthy baby. Some twothirds of registered deaths occurred in women since the outbreak began in October 2007.

The yellow has largely disappeared from her eyes, but the fear of re-infection remains.

Since a ceasefire between the government and rebels two years ago, the Ugandan government and donor agencies have asked people in camps to return to villages in the north, whose fertile land could turn the long-neglected region into the country’s bread basket. But health officials in the northern Kitgum district say returnees have been an easy target for diseases including hepatitis E and malaria among others.

The hepatitis E virus can be spread by food or water contaminated with faeces. There is no vaccine or treatment for the disease, which can cause jaundice, loss of appetite, an enlarged liver, nausea and vomiting. In some cases, the disease causes only mild symptoms, but it can kill.

The most vulnerable are children and pregnant women.

• By Jack Kimball. Abridged from a Reuters article on www.refiefweb.int via googlealerts Hepatitis E.. »» is transmitted via the faecal-oral route »» does not develop into a chronic (life-long) infection, however, the infection is more severe among pregnant women in the third trimester »» is found most commonly in developing countries, especially India, Asia, Africa and Central America.

Stock photo - image via Google Images

Health workers say the disease is now on the decline, but an eight week incubation period means more cases could appear.

The The Hep Hep CC Review Review

ED63 ED63

December December 2008 2008

37 37

feature

Stanley Greene: photographing illness while confronting his own Photo-journalism is not an easy job at the best of times. Daryl Lang reports on a globe-trotting photographer with a hep C story.

S

tanley Greene, the award-winning photographer with the NOOR agency, recently revealed that he has been battling hep C, [and that] after several months off work, has his hep C under control with medication.

Recently, he travelled to Afghanistan and shot a powerful photo story about the crisis of drug dependence and infectious disease.

Greene revealed that he had hep C while speaking before an audience at the Visa pour l’Image festival in Perpignan, France, in September. In an interview with Photo District News, Greene stressed that illness is no reason for an editor not to consider a photographer for an assignment.

Greene kept a busy schedule at Visa pour l’Image and spoke animatedly about his work. But he said he was confined to bed for a month recently.

“There were times I couldn’t climb up the stairs at the subway. My legs just felt like cement.

Yeah, it was really bad,” he says.

He completed the story in a month. He says the pressure to finish the project before the festival and the state he was in – a “fog” – actually helped his photography.

Greene sounded impatient with editors who passed on the project initially but were praising it when they saw it on display at Perpignan.

“Many people had an opportunity to support this project. They decided not to,” he said.

At the panel discussion at Perpignan, Greene spoke about a moment in Afghanistan when he watched a doctor diagnose a child with hep C – likely transmitted through a contaminated blood supply in Kabul.

• Daryl Lang is news editor for Photo District News. Abridged from www.pdnonline.com via www.hcvadvocate.org Also see: www.noorimages.com

Greene credits his friends, including fellow photographers at the NOOR agency and Visa pour l’Image director Jean-Francois Leroy, with motivating him to seek treatment and get back to work. Leroy also helped Greene find backers to fund the Afghanistan project, including the Russian Reporter Magazine.

Stock photo - image via Google Images

Travelling with filmmaker Nina Alvarez and a translator, Greene went into drug dens and hospitals, photographing users and doctors.

38

www.hepatitisc.org.au

obituary

Talented agent loved his actors John Cann, 1950-2008 John was a rebellious and at times troubled young man who emerged as a leading Australian theatrical agent, much admired by his clients.

He helped guide the careers of actors such as Naomi Watts, Simon Baker, Tom Burlinson, Noah Taylor, Jack Thompson, Bryan Brown and Rachel Ward. He helped fund Watts when she moved to the US until her break came in Hollywood.

The Canns lived at Newport because it was attractive but cheap in those days. They made documentary films, including one commissioned

by Sir Keith Murdoch on the printing industry. Films, then, were in John Cann’s blood.

John Cann excelled at Pittwater High School in class and on the sports field.

He won a scholarship to Sydney University to study engineering but dropped out, partly because he was demonstrating against Australia’s participation in the Vietnam War. Cann ran a vintage clothes shop in Paddington, helped start the Paddington markets and searched for something to do in life. His father’s death did not help; he appeared lost. He lived in England, came home and struggled with a drug habit. But he fought with the stubborn pride that friends and family knew, and conquered the problem.

By this time, June Cann was running one of the foremost theatrical and literary agencies in Australia. Her clients included Tom Keneally, Alex Buzo, Ray Barrett, Pat Bishop, Lynette

He was idealistic but he had an eye for talent; Naomi Watts was a case in point. Jack Thompson admired the way in which Cann collaborated with his clients, sharing in their success while caring for their wellbeing. Nicole Kidman regarded him as a father or big brother to many in the industry. Rolf de Heer acclaimed his support for Aboriginal Australians in film-making.

John Cann was charming and good-looking, with a winning smile. He would make flying visits to people or places, carry out a flurry of odd jobs in houses and gardens. He was driven by competition. Keith Dewhurst said it was never with the world or other people, but with himself.

Stock photo - image via Google Images

His father, Alex Cann, was an engineer who became an actor, with minor roles in a couple of Humphrey Bogart films. He served in the Canadian Navy during World War II and became a war correspondent. John’s mother, June, left school during the Depression to work. She married Alex while working as a continuity girl on the film, Eureka Stockade.

Curran, Jack Thompson and Bryan Brown. June took John into June Cann Management, and he found his vocation.

“We knew, I suppose, the most magical and half-maddening character we will ever know,” Dewhurst said. “But not whether he was as happy for a moment as he made all of us.”

John died at 57 from complications caused by liver cancer. He had hepatitis C. By the time liver cancer was discovered, it had spread. A doctor said the best that could be done would be to make him comfortable, but he fought in his usually stubborn manner.

John Cann is survived by his stepson, Sam Lightfoot, a brother, Hugh, and a sister, Alexandra, who cared for him in his final months.

• By Tony Stephens. Abridged from The Sydney Morning Herald (25 Sept 08).

Full article – http://www.smh.com.au/ news/obituaries/talented-agent-loved-hisactors/2008/09/24/1222217327095.html Hepatitis C becomes life threatening for only a small percentage of people, after a long period of time. Of 100 people who have had hep C for 40 years, only five will experience liver failure or liver cancer. ED

The Hep C Review

ED63

December 2008

39

my story

Floâ&#x20AC;&#x2122;s story: a journey thro

I

am in my mid 60s and 30 years ago I contracted hep C via a blood transfusion. I had been a blood donor for many years, and was regularly giving donations up until 1990, when I received a letter to attend the clinic for further testing. Unfortunately those tests proved positive for hep C. I was referred to a gastroenterologist and remain a client of that clinic.

Little was known about hep C in those days; I remember being told that within 20 years I would have deterioration in my health due to liver fibrosis. I decided to change my lifestyle and started using complementary therapies, but was aware of the need to continue contact with the clinic, and have kept in good health.

In the mid 1990s, one did not disclose being hep C positive, except to medical or other staff if requiring a procedure. On one occasion before surgery I was told I would be last on the list due to my hep C status. Fortunately, health workers are more educated these days and hopefully patients are not discriminated against. Having required surgery several times since, I have not been aware of any discrimination.

40

www.hepatitisc.org.au

I have always worked full-time in a stressful position, exercised and led a very busy lifestyle.

I have been fortunate to not have any symptoms from the virus except for a slightly elevated ALT and AST. I have suffered from arthritis and hypertension but these run in the family and are not due to the virus.

Seven years ago I was involved in a five year research project. This involved a full medical history, medications both prescribed and complementary, monthly blood tests, and a liver biopsy at commencement and completion.

The result of the biopsy at commencement was fibrosis 1, but at the completion it was fibrosis 2-3, which was a complete surprise to my consultant and me.

Treatment was discussed and I reluctantly agreed to an appointment with a treatment CNC. In the meantime I acquired as much information as was available on treatment, side effects, research results for genotype 1 and the response rate.

A close friend attended that first appointment with me as we knew that due to my negative a t t i t u d e t o w a r d s treatment, I

my story

ough hep C and treatment would not take in much of the information. It also helped to have someone to discuss the information with and help with decision making.

Forty-eight weeks is a long time to commit to. I was booked to go on an overseas trip in the latter part of 2007, but agreed to commence treatment on return.

My treatment CNC suggested that I take sick leave for the first month, and I organised this. I was fortunate to work in a good team with very supportive and understanding leaders and staff.

Treatment was commenced in the first week of November 2007, and the first few weeks were relatively symptom free, except for occasional nausea, dyspepsia (indigestion) and increased arthritic pain. These I chose to ignore and continued on with my walking, exercising and gardening. Unfortunately a disc in my back herniated, pinching two nerves, and I was unable

to return to work for four months.

On return to full-time work, I found myself very tired at the end of a shift, as my neutrophils and lymphocytes were very low. I was breathless climbing stairs, walking and doing any form of exercise.

At week 12, the viral load had only decreased by 2 log, and at week 24 it was indeterminate, but on retesting, the virus had cleared.

Working was a distraction from the side effects, but I didn’t listen to my body and twice more became sick and required time off work. I developed bronchitis for the first time and now have a chronic cough.

I would like to pass on some valuable advice.

Nurture yourself. If you work, make sure you have plenty of rest times. Only do the necessary housework and accept help from family and friends graciously. If necessary, pay someone to do your heavy housework, gardening and lawns.

Stock photos - images via Google Images

I am blessed to have caring family and friends, an excellent treatment team and very supportive work colleagues who have helped me cope, particularly in the latter stages of treatment. With only two weeks of treatment to go, I look forward to returning to my former energy, socialising at night without wilting, spending a whole day window shopping and a holiday later down the track. I am confident I will be a “sustained responder” and when I have my final blood test in six months’ time, the virus will indeed be gone.

Flo, NSW

The Hep C Review

ED63

December 2008

41

feature Hello, I have been having difficulty remembering things lately, and I can’t concentrate or think properly. It’s like I’m having a mental block. Could this be related to living with hep C? What can be done to manage it?

Your ‘cognitive ability’ refers to your ability to think clearly and to concentrate.

Some people with hep C report changes in their mental or cognitive ability from time to time. This can take several different forms.

You may find you cannot concentrate for long periods of time, or you may notice your thought processes seem slower than usual.

You may have a hard time coming up with words you want to say, or you may just feel mentally tired. It can feel as though your head is cloudy and foggy.

Loss of concentration, memory and the ability to think clearly are frequent symptoms of hep C. These cognitive changes are sometimes called ‘brain fog.’ Like other symptoms of hep C, these cognitive changes often come and go.

Here are some suggestions for coping with brain fog and keeping your brain healthy: • Be physically and mentally active on a daily basis.

• Maintain a healthy diet, drink plenty of water and get plenty of sleep.

• Avoid alcohol or other substance use.

• Meditation and relaxation techniques can help you think more clearly.

• Stay organised.

• Create habits and daily routines.

• Write things down – keep a diary and make a list.

• Use tools to remind yourself of important tasks – such as calendars and post-it notes.

• Challenge your brain with games, puzzles and crosswords.

• Do one task at a time.

• Check out your local library for books about memory improvement techniques.

If brain fog is an ongoing issue for you, we suggest you talk to your doctor. Medication can sometimes help alleviate cognitive problems.

Hep C Helpline

Stock photo - image via Google Images

•

‘Hello Hep C Helpline’ is brought to you by the Hep C Helpline team. The questions are based on genuine calls; however, some details have been changed to ensure caller anonymity.

42

www.hepatitisc.org.au

Council keyhole Continued from page 2. ... project work as this would be at the expense of our current hep C workload. Additional funds would also be needed to enable us to build strong relationships with the diverse communities affected by hep B. We believe that without active and involved hep B-affected community membership and thus a mandate for representation, we cannot claim to be a truly representative viral hepatitis community-based organisation.

We have always attempted to meet hep B needs as they have presented themselves. We provide information and support regarding hep B. However, the information provided is relatively basic when compared with our information provision and education resources on hep C. We have not produced our own detailed hep B information materials, relying instead on the work of others: in particular, the Hepatitis Australia booklet, Hepatitis B: What You Need To Know, and factsheets produced by NSW

Health and pharmaceutical companies who manufacture treatments for hep B. We also refer people to Hepatitis Australia’s website and the HepBForum e-forum.

Our Hep C Helpline provides limited information about hep B to relevant callers at a slightly higher level contained in our factsheet. Most calls involve questions about testing. For calls of a more detailed nature, we refer the caller to the Sydney Sexual Health information line – who provide a service for the whole of NSW. Since early 2008, we have routinely carried hep B related articles within our Hep C Review magazine. These have included information articles and advocacy editorial pieces.

We continue to explain the differences between B, C and other forms of hepatitis in our worker education programs.

In regard to strategic direction, we continue to advocate for a national hep B strategy and improved hep B healthcare, and work with other organisations calling for the same.

• HCCNSW

The Hep C Review

ED63

December 2008

43

promotions

Access All Areas is for injecting drug users, especially heroin users. It aims to explain drug treatment options as well as the treatment of other drug-related health problems such as dental care, hepatitis and overdose.

To obtain free copies of the DVD, please contact: phd@nationalmailing.com.au or 1800 020 103 (ext 8654) or visit www.alcohol.gov.au The Hep C Helpline also has free copies to give away. Call 1800 803 990

44

www.hepatitisc.org.au

Have you finished treatment for hep C?

If you completed hep C treatment at least six months ago, we would like to talk to you about your experience of life after treatment.

â&#x20AC;˘ Interviews last for about an hour. â&#x20AC;˘ Please contact Max on 9385 6436 or nchsr@unsw.edu.au to arrange an interview.

This is a research project of the National Centre in HIV Social Research, The University of New South Wales.

membership matters You are vital to us – We are here for You The “silly season” is upon us once more…and it’s time to remind you of our annual Early Bird membership promotion. Membership renewal invoices will go out to Professional and Organisational members early in January, but we’re inviting all members to enter our prize draw by renewing BEFORE 1 March. This is when our 2009 membership year officially commences and all categories of membership are due for renewal (unless you have joined in the preceding three months).

It’s easy and convenient to renew via our secure online payment facility (go to the Membership section on our website www.hepatitis.org.au), but we still also accept payment the old-fashioned way.

Just remember…unless you receive an invoice, we need you to complete a membership form.

See your Summer edition of Member News (exclusively for financial members) for more details of our Early Bird draw!!

Also in Member News, watch out for: • 6th Australasian Conference on Viral Hepatitis, Brisbane – feedback from a sponsored community member • Getting to know your Board – meet our new Volunteer Representative, Liz Milne • News from our Annual General Meeting and Audrey Lamb Community Forum on 13 November.

NOW AT RPA HOSPITAL We offer free confidential medical and counselling services: Testing and treatment for STIs (sexually transmissible infections) Hepatitis vaccinations Hepatitis C testing & referral HIV testing and counselling HIV treatment and management Free condoms and lubricant NSP (needle syringe program) Sexual health check-ups Sex worker health checks For appointments and other information, call 9515 3131 or drop in to see our nurses.

Ground Floor, Page Building (Bldg.14), Royal Prince Alfred Hospital, 119-143 Missenden Rd, Camperdown

The Hep C Review

ED63

December 2008

45

promotions Are you currently on treatment for hep C? Have you recently been on treatment for hep C? Do you have family or friends providing you with support?

Would you like to see improved services for support people?

We are looking for volunteers to complete a brief survey Sydney South West Area Health Service is recruiting people on hep C treatment, and their support people, to complete a brief survey on support needs.

We will use the information gathered to improve our services for people who are providing support to someone on hep C treatment.

We are looking for: •

•

People who have been on hep C antiviral treatment for at least 8 weeks, or completed treatment no more than 3 months ago, and live in Sydney’s inner west.

A family member, partner, friend or other support person who is providing/has provided practical, emotional or other support to the person on treatment.

The surveys are around 12 pages long and take 15-20 minutes to complete.

We will post surveys for you and your support person to complete and return to us by prepaid post. All surveys are confidential and the information will help us develop resources or services to assist family members or friends who are providing support to people on hep C treatment.

You will be reimbursed for your time.

Please call Scott Rutter, Hepatitis C Health Promotion Officer – SSWAHS (Inner West) on 9515 5293 for more information.

• This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney South West Area Health Service.

To organise a time to speak to a volunteer phone

9332 1599 (Sydney) 1800 803 990 (Freecall NSW regional) 46

www.hepatitisc.org.au

halc

promotions

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

HALC is an accredited community legal centre that provides free advocacy and advice. Our solicitors understand the unique legal needs of people living with hep C. We frequently provide assistance in the following areas: • Immigration • Discrimination and vilification • Superannuation, insurance and employment • Privacy and Health Care Complaints • Enduring Power of Attorney and Enduring Guardianship.

When advocating on your behalf we understand the importance of confidentiality and practise 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

Do you provide a service or have a research study that will benefit people with hep C? We’ve reserved this space, free of charge, for you!

Give us a call on 9332 1853 or email paulh@hepatitisc.org.au (conditions apply)

ONLINE & CONNECTED ONLINE FORUM The Australasian online internet support forum Hep C Australasia provides a secure and supportive environment for people affected by hep C. Here, you will find conversation threads, chat room, blogs, private messaging and more.

http://hepcaustralasia.org COUNCIL WEBSITE The Hepatitis C Council of NSW website is internationally accredited and contains a wide range of hep C related information.

Our quarterly magazine, The Hep C Review, is fully accessible with over 10 years worth of editions downloadable as PDFs.

In addition to detailed downloadable factsheets, the site features search functions and an email ‘Your Questions Answered’ facility.

All hep C info resources frequently used in NSW are viewable as PDFs and the site carries research news and reports.

www.hepatitisc.org.au

The Hep C Review

ED63

December 2008

47

promotions feature A historical perspective

hep C bookmarks O

ur hep C bookmarks (below) have proved to be a great way to promote greater hep C awareness within the general community. Almost 250,000 have been distributed across NSW via many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

Can you help raise awareness by distributing the bookmarks?

Ideas include: • Taking them to doctors’ surgeries in your area • Taking them to your local library (to see whether it is a participating library) • Taking them to your local community centre.

If you are able to help, we can supply as many bookmarks as you need. Just go to our website and download one of our resources order forms, or phone the Hep C Helpline (on 1800 803 990).

• HCCNSW

.. taken from Edition 3, December 1992.

It is wonderful to have on board a fully functional Victorian Group. The Coordinator is Krys, the secretary is Sharon.

The [national] organisation is now an incorporated and registered charity. The plan is to educate the community (including GPs) about hep C, keep ourselves informed, help local groups get going and get more government action.

I wonder where the next AGM will be held?

Perth, Adelaide or Melbourne? Or maybe Brisbane or the Sunshine Coast will be a late contender.

Gosford branch is about to make its presence felt.

In the Eastern Suburbs of Sydney, Heather would like to have a meeting so get in contact with her and save yourselves a lot of travelling. Anyone else who would like to have a local group, just let me know and we’ll let others know. Could phone counsellors please ask people they talk to if they would like contact with others in their area? The Australia-wide database is kept in Sydney.

There has been some discussion again as to whether the Group should be made wider to include hepatitis B. Recommendations have been heard from sociologists who advise not to, as it has been shown these groups [like us] which are more homogenous have more impact.

Licensing of interferon for use with hepatitis C: this happened in early December. It can now be legally prescribed for hep C patients but they have to pay for it themselves ($150 per week approx). We hope it will be on the PBS by August next year.

Discrimination: Following reports of discrimination against a Gosford man who has hep C, enquiries were made of the antiDiscrimination Board as to where we stand.

Employers are NOT allowed to sack us. At present the Group is making enquiries from a solicitor as to where “Cs” stand regarding compensation for themselves.

• HCCNSW (Sept, 1992)

48 www.hepatitisc.org.au www.hepatitisc.org.au

research update Breaking the silence surrounding hep C

Vitamin D and liver disease

USA – Hepatitis C virus (HCV) is the most common chronic blood-borne virus in the United States. Despite this fact, there is a startling lack of awareness about HCV among individuals who might have contracted the virus.

In this study, grounded in self-efficacy theory, we analyse public service announcements for HCV. Using focus groups to contextualise the responses of individuals living with HCV, we conclude that stigma and structural barriers pose the greatest challenges for health communicators trying to reach at-risk populations.

The findings suggest that expanded use of celebrity appeals, realistic drug-use portrayals, more extensive use of social networking in tandem with non-traditional media, tapping into veterans, and maximising self-efficacy messages while minimising fear tactics offer new hope for successful health communication strategies. With 3.9 million people in the United States infected with HCV, this study offers urgently needed communication strategies to address this silent epidemic.

Grow, J.M. and Christopher, S.A. Breaking the Silence Surrounding Hepatitis C by Promoting Self-Efficacy: Hepatitis C Public Service Announcements. Qual Health Res, 2008. 18(10): 1401-1412.

• Abridged via nspforum

USA – Researchers from the University of Tennessee in Memphis measured the vitamin D levels of 118 chronic liver disease patients.

Researchers found 92.4% of chronic liver patients had some degree of vitamin D deficiency and at least one third were severely deficient.

Severe vitamin D deficiency was more common among cirrhotics.

“Since deficiency is common among these patients, Vitamin D replacement may hopefully prevent osteoporosis and other bone complications related to end stage liver disease,” said lead researcher Dr Satheesh P. Nair.

The study included 43 hepatitis C patients with cirrhosis; 57 hepatitis C patients without cirrhosis; 18 cirrhosis patients without hepatitis C. The severity of vitamin D deficiency was divided into three groups: mild (between 20-32 ng/ml), moderate (between 7-20 ng/ml), and severe (less than 7 ng/ml).

Vitamin D, a fat-soluble vitamin, helps the body absorb calcium. A lack of vitamin D causes calcium-depleted bone, which can weaken the bones and increase the risk of fractures resulting from osteoporosis.

A diet rich in vitamin D, including foods such as fish, eggs, fortified milk and cod liver oil is essential to maintaining good bone health.

Vitamin D Deficiency Prevalent in Patients with Chronic Liver Disease. Ulitsky A, et. al. Presented at the 73rd Annual Scientific Meeting of the American College of Gastroenterology, 3-8 Oct 08, Orlando, FL. • Abridged from www.eurekalert.org via www. hcvadvocate.org

In previous readership surveys, many people said that they wanted detailed information on hep C. These ‘research update’ pages attempt to meet this need.

Individual articles may sometimes appear to contradict current knowledge but such studies are part of overall scientific debate. They help broaden our overall knowledge and help develop consensus opinion on a particular research topic.

The following articles 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 NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). ED

The Hep C Review

ED63

December 2008

49

research update HCV clearance improves insulin resistance

Hep C vaccine: supply and demand

USA – Several studies have reported an association between chronic hep C and a higher risk of insulin resistance, a condition in which cells do not respond normally to insulin, leading to impaired glucose metabolism. Over time, insulin resistance can progress to type 2 diabetes.

In non-responders and relapsers, there were no significant changes in homeostasis values after completion of antiviral therapy.

USA – Despite difficulties associated with HCV’s extreme variability and mutability, several vaccines that prevent initial infection or viral persistence, or that clear viraemia in individuals with chronic HCV infections, are currently in development.

As reported in the 11 Jan 2007 web edition of the American Journal of Gastroenterology, Japanese researchers assessed the effect of anti-HCV therapy and HCV clearance on insulin resistance, beta-cell function, and expression in the liver of insulin receptor substrate (IRS)1/2, key molecules involved in insulin signalling.

Immunoblotting showed a 3-fold increase in IRS1/2 expression after HCV clearance.

Immunostaining revealed greater IRS1/2 expression in hepatocytes.

They analysed data from 89 patients with biopsy-proven chronic HCV infection. Patients received interferon-alpha, with or without ribavirin, for sixmonths. They were classified into three groups at six-months after the completion of antiviral therapy according to response: • Sustained responders (n = 29); • Relapsers (n = 12); • Non-responders (n = 48).

Insulin resistance and betacell function were assessed using the homeostasis model assessment method. Hepatic expression of IRS1/2 in 14 sustained responders was evaluated using immunoblotting and immunostaining.

50

www.hepatitisc.org.au

In sustained responders, however, homeostasis values significantly decreased, from 3.1 to 1.7 after antiviral therapy.

In conclusion, the authors wrote, “We showed that clearance of HCV improves insulin resistance, beta-cell function, and hepatic IRS1/2 expression.”

These data indicate that in addition to halting liver disease progression and reducing the development of liver cirrhosis and hepatocellular carcinoma, successful therapy can also improve metabolic abnormalities, which in turn may reduce the risk of cardiovascular disease.

Kawaguchi T, et al. Clearance of HCV Improves Insulin Resistance, Beta-Cell Function, and Hepatic Expression of Insulin Receptor Substrate 1 and 2. American Journal of Gastroenterology. 2007, 102(3): 570-576.

• Abridged from www. hivandhepatitis.com

At least one vaccine that may prevent chronic persistent infections will soon be available for testing. We review the widespread importance of HCV infection and disease, the immune response to HCV and correlates of protection, prevention strategies and vaccine candidates, and groups that will need the vaccine and provide suitable populations for assessing vaccine safety and efficacy.

The evaluation of prophylactic vaccines is particularly problematic since distribution must focus upon individuals at high risk of exposure, for example, intravenous drug users and health-care providers in areas with high HCV prevalence. Although there is a huge need for therapeutic vaccines, further immunological hurdles must be cleared before one becomes available.

Strickland GT, et al. Hepatitis C vaccine: supply and demand.

Lancet Infect Dis. 2008 Jun;8(6):379-86 Abridged via www. medadvocates.org

research update Insulin resistance, diabetes and increased liver fibrosis

Social worker role in hep C treatment

Italy – Insulin resistance is a major determinant of advanced hepatic fibrosis in patients with chronic hepatitis C (genotype 1), especially in the presence of severe inflammation, according to study findings published in the May issue of the American Journal of Gastroenterology.

Australia – This study explored social workers’ perceptions of the contribution of their role in hepatitis C treatment centres in relation to people’s treatment experience.

“Metabolic factors may affect the course of chronic hepatitis C,” Dr Salvatore Petta, of the University of Palermo, Italy, and colleagues write.

“Insulin resistance (IR) determines steatosis, but its direct role in affecting progression of hepatic fibrosis is less clear.”

In the present study, the researchers examined whether increasing degrees of IR, up to overt diabetes, were associated with steatosis and higher stages of fibrosis in patients with genotype 1.

Of the 201 patients, 55 (27%) had liver fibrosis of grade 3 or higher by the Scheuer score.

Moderate/severe liver inflammation was observed in 72.7% of patients. Overall, 99 patients (49.3%) had histological evidence of steatosis.

The team reports that 95 of the subjects (47.3%) were not insulin resistant (group 1), 77 (38.3%) were insulin resistant without diabetes (group 2), and 29 (14.4%) were diabetic (group 3).

Analysis revealed an association between severe fibrosis (Scheuer score of 3 or greater) and prevalence of IR and high inflammatory activity.

Overall, 59% of patients in group 3 had severe fibrosis, compared to 30% of those in group 2 and 15% of those in group 1.

“Our study has conclusively demonstrated that IR, with or without diabetes, is a strong independent risk factor for fibrosis,” Dr Petta’s team concludes. “Whether correcting IR by lifestyle modifications and/or medications will modify the effect of IR on liver fibrosis remains to be demonstrated by appropriate trials.”

Insulin Resistance, Diabetes Increase Liver Fibrosis in Patients With Genotype 1 HCV. Am J Gastroenterol 2008;103:1136-1144.

• Abridged from Reuters Health (25 Jun 08).

The roles that social workers fulfill and their contribution to the multidisciplinary team and culturally competent service delivery, were explored. Furthermore the knowledge, skills and values required for providing a competent service in a treatment setting was explored.

The broad theoretical frameworks that inform social work practice were considered, especially the biopsycho-social model, the strengths perspective, the critically reflexive approach and communications theory. We used a semistructured interview method for data collection.

Ten social workers participated in the study. The findings highlight the needs of patients and how social worker participants described helping to address and meet these needs by employing their knowledge, skills and values through their social work roles and interventions in a team context in a multicultural and multi-faceted work environment.

A major challenge that social workers described was to keep people on treatment despite debilitating side effects that diminish motivation to complete treatment. Shortcomings included the limited psychiatric support available at many treatment centres. The findings lead to recommendations to improve social work services in treatment settings. More research was recommended in areas such as motivational techniques, psychiatric support, and effective group work strategies. The need for increased funding for social work positions in the hepatitis C field was also highlighted.

It is anticipated that findings of this study can be applied to hepatitis C treatment in broader settings such as prisons, drug and alcohol settings and general practice. This research will contribute to literature in the field of hepatitis C treatment models and in the field of social work practice in hepatitis C contexts.

• Marlize Mouton, National Centre in HIV Social Research. The full thesis can be accessed electronically through the UNSW library website.

The Hep C Review

ED63

December 2008

51

research update Hep C and kids QoL Australia – The aims of this study were to determine the health-related quality of life (HRQoL) of children with chronic hepatitis C virus (HCV) infection and compare HRQoL as reported by parents, and to ascertain parents’ perceptions and concerns about current and future life for their child with HCV, and compare these findings with those reported by adolescents.

The study group comprised children attending a paediatric HCV clinic in Melbourne, who acquired HCV prior to 12 months of age by vertical transmission or blood transfusion.

Two validated (parent- and self-reported) questionnaires of HRQoL were completed.

Scores for children with HCV were compared with normative data (representative sample of 3119 age-matched Victorian children). A studydesigned questionnaire relating to the impact of the diagnosis of HCV on parent and child perceptions of current and future health was used.

Physical and psychosocial summary scores were significantly lower in HCV than nonHCV children (45.3 vs 49.6 and 44.0 vs 50.1, respectively). Nine out of 11 scale scores were significantly lower in children with HCV, most notably the General health (49.9 vs 77.1) and Parent impact-emotional (45.6 vs 80.3) scales.

Children reported reduced physical functioning (82.8% vs 94.4%) but were otherwise less concerned than their parents about their future health.

Despite being “asymptomatic” on routine medical history, children with early acquired HCV have significantly poorer health status than community controls. These findings suggest the need for services currently available for adult HCV patients to support families and children with HCV. Nydegger A, et al. Health-Related Quality of Life in Children With Hepatitis C Acquired in the First Year of Life. J Gastroenterol Hepatol.

2008;23(2):226-230 • Abridged from www.medscape.com For more info on pregnancy, babies, children and hep C, visit our website and check out our factsheets and info booklets. ED

52

www.hepatitisc.org.au

The physical health status of young Australian offenders Australia – This study describes the socioeconomic background and physical health status of young offenders in custody in NSW. It involved a cross-sectional survey of all young offenders held at nine juvenile detention centres (eight male and one female) across NSW between January and March 2003.

Demographic and health information was collected by nurse interviewers and psychologists using face-to-face interviews. Blood and urine samples were collected to screen for blood-borne viruses and sexually transmissible infections.

The final sample comprised 242 young people (223 males and 19 females). Overall, 90% of those assessed rated their general health as ‘excellent’, ‘very good’ or ‘good’. Sixty-nine (30%) young offenders reported that they had been previously diagnosed with asthma. Two young women reported a prior diagnosis of diabetes with the results of the random blood glucose testing indicating that a further six young people required testing for possible diabetes.

None of those tested were positive for HIV, 9% tested positive for hepatitis C antibody, and 11% tested positive for hepatitis B core-antibody.

The findings indicate that young offenders in NSW have backgrounds characterised by extreme disadvantage (poor educational attainment, unemployment, and care placements) and poor physical health. Parental incarceration was common to 43% of the sample. Our findings reinforce the concept that for marginalised groups, contact with the criminal justice system represents an important opportunity to detect illness, initiate treatment, and promote contact with health services.

Butler T, et. al. National Drug Research Institute, Curtin University, Perth, Western Australia.

• Abridged from www.ncbi.nlm.nih.gov

research update Cancer link to liver’s healing Australia – Even after serious trauma the liver can regenerate, thanks to cells called hepatocytes that rapidly grow and divide, and replace the lost tissue. However, when more chronic damage is done to the liver, for example by diseases such as hepatitis or alcoholic liver disease, another type of cell comes into play – liver progenitor cells.

Professor George Yeoh and colleagues from the Liver Cancer Laboratory at the UWA Centre for Medical Research have discovered a link between liver progenitor cells and liver cancer.

Their findings could explain why many patients with chronic liver disease develop cancer.

“A liver progenitor cell can either be good or bad,” says Professor Yeoh. “The longer you make them work, the more likely they are to become bad.”

Professor Yeoh has been investigating the relationship between liver progenitor cells and liver cancer, and trying to pinpoint the genetic changes that make a good progenitor cell turn bad.

This project aims to investigate the ways in which hep C is being constituted as a disease medically, socially and culturally in Australia to develop insights into how it might be confronted both medically and socially without further stigmatising those affected by it. To this end, the aims of the project include addressing the following questions: What disease concepts are being mobilised to make sense of and act on hep C? What metaphors are circulating in relation to the disease? How do hep C’s symbolic and practical associations with injecting drug use and HIV act to construct the disease both conceptually and materially? How do the wide diversity of symptoms and prognoses related to hep C impact on the way the disease is understood both at a cultural level and among affected individuals?

• Abridged from http://nchsr.arts.unsw.edu.au/

Professor Yeoh’s team used special mice in which the ability of liver progenitor cells to divide was defective. The team gave these mice liver disease and found they were less likely to develop cancer. This suggests that the more liver progenitor cells are stimulated, the greater the risk of liver cancer.

An update from the Australian Research Centre in Sex, Health and Society – Recognising and responding to hepatitis C in Indigenous communities in Victoria.

Next, they looked for the genetic mutations responsible. By comparing the genetic profile of cancer-causing and non-cancer-causing progenitor cells, Professor Yeoh’s team has identified around 200 potential genes involved in the cancer-causing process.

“We’ve found the haystack, now we are looking for the needle,” Professor Yeoh says. The most likely candidates are what he calls “cell death protecting genes” that stop a cell from undergoing programmed cell death – a vital part of keeping cell growth in check.

Identifying these key genes could lead to better diagnostic tools to predict patients at greater risk of cancer and hopefully to treatments that disable the genes, thereby turning bad progenitor cells back into good cells.

• Abridged from Research Highlights, Cancer Council June 08, via Google Alert.

An update from the National Centre in HIV Social Research – Under construction: the social and cultural politics of hepatitis C in Australia

This project involves identifying the barriers to hep C anti-viral treatment for Indigenous communities in Victoria. Hep C treatment has changed significantly in recent years, with a significant increase in cure rates. It is unclear whether Indigenous people with hep C are aware of these changes, and what barriers restrict accessing health care and treatment.

This project will also establish hep C treatment models, appropriate to Indigenous communities.

The study will offer ways of understanding barriers to treatment and how these might be reduced. Those interviewed will include: Indigenous people with hep C, Aboriginal health workers, GPs, drug and alcohol Workers, Indigenous access workers and Koori hospital liaison officers.

• Abridged from www.latrobe.edu.au/arcshs/ index.html

The Hep C Review

ED63

December 2008

53

interferon-based therapy Peg interferon alpha and ribavirin Overview Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily.

Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has.

S100 government subsidised treatment information Subsidised ‘peg combo’ treatment for people with chronic hep C is available to those who satisfy all of the following criteria: 1 Blood tests: people must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive).

2 Contraception: women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both a 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 person). Female partners of men undergoing treatment must not be pregnant.

3 Age: people must be aged 18 years or older.

4 Treatment history: There are two brands of therapy. With one brand, people must not have had prior interferon or peg interferon treatment. With the other brand, people can access re-treatment (phone the Helpline for more info on this).

Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks.

Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2 log drop. The baseline and 12-week tests

must be performed at the same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of their 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 only continue treatment after 24 weeks 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 only continue treatment after 24 weeks if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12.

Liver biopsy no longer a general requirement for treatment From 1 April 2006, a biopsy examination is no longer a mandatory pretreatment test for people wanting to access government subsidised S100 hep C pharmaceutical treatment.

CAUTION Treatment with interferon alpha 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 PegInterferon Alpha-2b 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.

54

www.hepatitisc.org.au

complementary medicine Note that some people with genotype 2 or 3 may still require biopsy to determine whether they have cirrhosis or bridging fibrosis – which would have an impact on treatment monitoring. See ‘Monitoring Points’, p54.

For further information on this issue, please speak to your treatment specialist.

Alternative access People wanting to access Interferon-based therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs.

For more information, people should contact their nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see p52).

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/counsellor for patients • 24 hour access to medical advice for patients • An established liver clinic • Facilities for safe liver biopsy.

Treatment centres exist in most parts of NSW. Phone the Hep C Helpline for the contact details of your nearest centre.

NSW Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment.

• HCCNSW (above info is reviewed by the Commonwealth Department of Health prior to publication).

Complementary medicine Good results have been reported by some people using complementary therapies, 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 (Ed 15, p 6). A similar trial, but on a larger scale, was later carried out (Ed 24, p 8).

A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (Ed 45, p 9).

Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments.

Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to: • Will she consider all relevant diagnostic testing?

• Will she consult with your GP about your hep C? • Is her treatment dangerous if you get the prescription wrong?

• How has her complementary therapy helped other people with hep C? • What are the side-effects?

• Is she a member of a recognised natural therapy organisation?

• How has she measured the health outcomes of her therapy?

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 arrangements about payment; perhaps a discounted fee?

It is also important to continue seeing your regular doctor and/ 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 well experienced in working with people who have hep C. Additionally, they should be members of a relevant professional association.

Phone the Hep C Helpline (see p56) for more information and the contact details of relevant professional associations.

• HCCNSW

C ReviewED63 ED62 December September2008 2008 55 55 The The HepHep C Review

support / info services NSW Hep C Helpline For free, confidential and non-judgmental info and emotional support, phone the NSW Hep C 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 health care and support services: • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers) Prisons Hep C Helpline A special phone service provided through the NSW Hep C Helpline that can be accessed by NSW inmates and prison staff. Call this free and confidential service by using the prison phone, or by calling the numbers above.

Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or www.daa.asn.au General Practitioners It is important that you have a well-informed GP who can support your long-term health care needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system. The NSW Hep C Helpline may be able to refer you to doctors and other health care workers in your area who have been involved in hep C training.

Alcohol and other drug services People who inject drugs and want to access peer-based info and support can phone NUAA (the NSW Users and 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 drug or alcohol related problem. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW) for advice and details on your nearest clinic.

56

www.hepatitisc.org.au

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.

Family Drug Support FDS provides assistance to families to deal with drug issues in a way that strengthens family relationships. Phone FDS on 1300 368 186.

Sexual health clinics Although hep C is not classified as a sexually transmissible illness, these clinics offer confidential pre- and post-test discussions and HCV blood tests. 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.

Neighbourhood Centres can be found by phoning your local town council.

Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English and for more details, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hep C Helpline distributes some information resources in various languages.

Further, 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

support / info services Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C related legal issues. They offer advocacy and advice on a number of problem types including: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and health care complaints; and the appointment of attorneys and guardians.

For more information, phone 9206 2060 or 1800 063 060, or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who are affected by hep C and have been through treatment. This is a free and confidential phone based service which anyone in NSW can access. To speak with a volunteer please phone 9332 1599 or 1800 803 990 (Freecall from regional NSW).

Nepean Hep C Support Group Guest speakers keeping you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept.

Lecture Room (Somerset Street entrance), Nepean Hospital. For further information, please contact Vince on 4734 3466.

Northern Rivers Liver Clinic Support Group An opportunity for people contemplating treatment, undergoing treatment, and for those who have completed treatment to get know each other. For more information, please phone 6620 7539.

Port Macquarie Hep C Support Group Peer support available for people living with or affected by hep C. For information, please contact Lynelle Wood on 6588 2750 or Alison Mears on 0418 207 939.

Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning between 10.30 and 11am, (Eastern-Standard-Time). Go to 3CRâ&#x20AC;&#x2122;s website at www.3cr.org.au and follow the prompts.

Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Hunter Hep C Support Services A service for all people of the Hunter region living with hep C. It is linked to a team of health care professionals specialising in hep C treatment and care. Based at John Hunter Hospital, New Lambton. For information, please contact Carla Silva on 4922 3429 or Tracey Jones on 4921 4789.

Parramatta Support Group A support group for people living with hep C, including those on treatment. From 7pm to 8.30pm, the first Thursday of each month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 162 Marsden St, Parramatta. There is no parking on site. It is a 10 minute walk from Parramatta station. For information, please contact Susan on 9845 5627.

Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. They offer free and confidential services to affected people and their families and/or carers. For more information, contact Traids on 9843 3143.

Westmead Hep C Information Night Our Information Nights are organised for people with hep C, families, friends and interested others. Parking is available at the hospital but you will need $6.00 in coins. Alternatively, it is about a ten minute walk from Westmead station.

Go to the main entrance of the hospital and ask for directions at reception, or look for our signs.

There is no charge for the Information Night and people from any area are most welcome. For information, please contact Susan on 9845 5627.

The Hep C Review

ED63

December 2008

57

noticeboard Our loan library Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require.

Items are loaned free of charge but you need to pay return postage.

Videos/DVDs The Big Combo (HCCNSW, 2002): 20 min DVD with two people who consider pharmaceutical treatment for hep C in very different ways; information on current treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English.

Everybody’s Business (MHAHS/ANCAHRD, 2004): Covering hep C and HIV; suitable for health workers working with groups. Comes with a facilitator’s workbook. Available in English, Khmer, Somali, Indonesian and Thai.

Look Back Look Forward (Kathy Sport/Ronin Films, 1998): 30 min video with real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers. English.

(Members only) Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hep C clinical management, treatment and prognosis.

Suitable for health workers. (Members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hep C management, treatment and lifestyle issues, as well as other liver disorders.

Suitable for individuals and health workers.

(Members only) •

HCCNSW

Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information: www.hepatitisc. org.au/hepcouncil/disputes_policy.pdf Or phone us here at the office (see page 3 for our contact details).

58

www.hepatitisc.org.au

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 Lifegift, the NSW/ACT network that coordinates organ donation.

Please phone 02 9229 4003.

membership form / renewal / tax invoice An invitation to join or rejoin the Council Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About the Council We are a community-based, non-government, membership organisation and a health promotion charity.

Our role is to represent and provide services to people affected by hep C throughout NSW. The Council is overseen by a voluntary Board of Governance, primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.

Privacy policy The Hepatitis C Council of 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.

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

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

A. For people affected by HCV, or other interested people Name Postal address

Suburb/town State

Postcode

Home phone

Email:

B. For individual healthcare or related professionals Name Occupation Postal address

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

Membership

May we list you on our referral database?

Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) must renew their memberships on an annual basis. Membership income assists the Council greatly in its work throughout the year.

Free copies of The Hep C Review required

NSW health care workers One of our services is the NSW Hep C Helpline, an information and support phone line that is 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 HCV update information. Please note that we encourage services on our referral database to become members of the Council.

1

2 5 10 20 50 80 160

C. For agencies, organisations and companies Name of agency Contact person Position Postal address

Suburb/town

As the most widely-read hep C publication in NSW, targeting both people affected by hep C and health care workers, The Hep C Review is provided free to all members of the Council.

State

Postcode

Work phone

Work fax

Mobile

Email:

In NSW, if your service has clients/patients who may be interested in The Hep C Review, please indicate the number of extra copies you would like to receive on this form.

May we list you on our referral database?

Free copies of The Hep C Review required

The Hep C Review

ED63

1 2 5 10 20 50 80 160

December 2008

59

membership form / renewal / tax invoice 2. Are you a new or existing member?

This is the first time I've applied to become a financial member

5. Separate donations are gratefully accepted by the Council.

Donations of $2 and over are tax deductible.

If you would like to make a separate donation, please record the amount here:

I'm already a financial member and this is a membership renewal

$.....................................

I currently receive your magazine and I want to become a financial member

6. If paying by credit card, please provide all information in this section.

I'm not sure - please check your database

Card number:

3. Our membership year begins on 1 March and finishes on the last day of February.

To become a financial member, please tick one membership fee box, below:

Card type

Waged: for people in paid employment

$25

Cardholder signature:

Concession: for people on government benefits

$10

Zero Fee membership: for people in NSW experiencing severe financial hardship (NSW prison inmates)

$0

Individual health or allied professionals

$40

7. Payment, GST and postage instructions

Community-based agency (Management Committee run)

$50

All Council membership fees are GST exempt but for most people, our membership fees are not tax deductible.

Public/private sector agency

$70

NB: Above are Australian rates only. Overseas applicants please contact the office or consult our website for additional surcharge information.

4. Contact with the Council office.

We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office.

I'd like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work for the Council

MasterCard

Expiry date:

Visa

month:

Bankcard

year:

Please print cardholder name:

If paying by cheque or money order, please make payments out to:

Hepatitis C Council of NSW - Membership

Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt?

If you would like a receipt for your payment, please tick the box (right)

9. Declaration - I accept the objects and rules of the Hepatitis C Council of NSW and apply for membership of the Council.

I agree to my personal contact details being held by the Council and used in accordance with the Council's privacy policy.

Signed:

Dated:

If you would like to obtain a copy of our constitution or privacy policy, please contact the office (02 9332 1853) or visit our website: www.hepatitisc.org.au

This section office use only

date received

staff initials

60

www.hepatitisc.org.au

amount received

receipt number

date entered

membership number

info pack sent?