Hep Review ED70

The Hep Review Spring

September 2010

Edition 70

The hep C virus: up close and personal Peer distribution: the future of NSP? Gene patenting: producing profits or cures?

Growing older with hep C Silibin following liver transplant High fructose intake linked to liver The Hep Review Edition 70damage September 2010 1

editor’s intro

a keyhole to our work

Hello readers

Awareness week

Welcome to Edition 70. We’ve tried to find articles of interest to as many readers as possible regardless of your background.

Hepatitis NSW celebrated World Hepatitis Day (WHD (19th May), and National Hepatitis Awareness Week (HAW (17-23 May) with a number of exciting events and activities.

Speaking of backgrounds, in my previous introduction (ED 69), I spoke of how we need to better understand the background of people affected by hep C in order to target resources – like this magazine.

We acknowledge the great work done already by workers and researchers who have looked at groups of people and explored their needs and key issues. We also note research and modelling that establishes dynamics such as a greater prevalence of hep C and worse outcome among males, and how the impact of treatment can continue for a long time after treatment is finished.

Well – there is great news. The Australian Research Centre in Sex, Health and Society has initiated a large national study; one that, for the first time, not only looks into the background of people with chronic hep C, but tracks the impact of hep C on their lives over time.

No other such study exists here or overseas. It is hoped that thousands of Australians will become involved in the study and that it will play a role in our better understanding hep C. Please check out the promotion on page 21.

I’ve gone in and signed up to go “under the microscope” and it was painless – and if you have hep C, I hope you will join up too. Have a great read!

Paul Harvey, Editor

Running for its second year, our Community Grants Program generated a wide range of innovative ideas for health promotion from non-government organisations across the state.

Twenty-nine activities were funded, including a number of arts and music awareness raising programs, resource development, community barbecues, sports days, information stalls, and community language information days including information in Arabic, Korean, Vietnamese, Cantonese, Mandarin, and Assyrian.

Feedback indicated that the activities succeeded in raising awareness about viral hepatitis and many respondents noted that those people who participated in the activities asked questions and took resources at the completion of the events.

Hepatitis NSW staff provided media kits, capacity building workshops and education sessions to further raise the profile of these vibrant community events and staff who attended and offered support at a number of local activities.

Other Awareness Week activities included the participation of members of Hepatitis NSW’s C-een & Heard positive speakers program in NSW and in the National Hepatitis Awareness Week media campaign, providing the all-important personal face of people living with hepatitis.

The launch of the 2010 photo-essay competition, StreetShot, was scheduled to coincide with the launch of National Hepatitis Awareness Week, with winning entries exhibited on opening night

Weblink of the month

Ever wanted to see how small the hep C virus is? There is a pretty cool website that takes you on an incredibly shrinking journey; down into the world of absolutely tiny things. Check it out in relation to our page 18 story, The Hep C Virus: a workshop manual http://learn.genetics.utah.edu/content/begin/cells/scale/

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

2 www.hep.org.au

Cover pic by jurvetson, courtesy of www.flickr.com

acknowledgements at CarriageWorks arts space on 18 May. This year, 12 services from across NSW participated in the competition, with the winning entry coming from Gungahlin Youth Centre. Hepatitis Awareness Week and the StreetShot exhibition were launched by Kim Stewart, Acting Director, Health Protection, NSW Department of Health.

Hepatitis NSW enjoyed major success in our work with media. We engaged Debra Maynard of Hootville Communications to assist with our four media releases and pitching. In response to our sending the national media report to Hootville, Debra Maynard reported, “Fantastic result for NSW – you have an active and switched-on regional community health sector by the looks – which is great. I reckon NSW audience reach is very good and underestimated. Good to see we contributed significantly to the national coverage, too.”

Nationally, there were eight online spots, 54 radio spots, 54 print and five TV spots reaching an audience of just under three million people.

In NSW, media hits reached just under one million people.

Continued on page 33.

Seeking your story

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Lia Purnomo Rachel Stanton Gideon Warhaft Scott West Hep Review medical and research advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Yvonne Cossart, Prof Greg Dore Prof Geoff Farrell, Prof Geoff McCaughan Mr Tadgh McMahon, Dr Cathy Pell Ms Ses Salmond, A/Prof Carla Treloar Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Andi Andronicos Prue Astill Sarah Fleet Margaret Hancock Gerard Newham Adrian Rigg Cindy Tucker Dog on the moon comic: Andrew Marlton Contact The Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au text/mobile 0404 440 103 post The Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney

Personal stories provide balance to our other articles. Please consider telling us your story.

Published articles attract a $50 payment.

Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published.

Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.

Seeking your ideas We want The Hep Review to remain relevant to you. If you have any ideas we can use as topics for our commissioned articles (e.g. see page 20), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’.

Just phone and ask for Paul (02 9332 1853), or email pharvey@hep.org.au or text me on 0404 440 103.

Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation. We are funded by NSW Health.

The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body.

Contributions to The Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published.

We’re happy for people to reprint information from this magazine, provided The Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons.

ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.

The Hep Review Edition 70 September 2010 3

contents Letters When a trial becomes a trial Hep C education questions News Telaprevir marketing deputy job advert Only four new cases of hep B in Cuba Hep-enhanced explosive devices Gregg Allman recovering from liver transplant French faux injecting facility US “ends” its war on drugs Gardai need better education about diseases Bollywood’s Amitabh Bachchan has cirrhosis Two new hep C drugs will slug it out One man gets new liver, other man gets old one Pamela Anderson fights for chimps Too many Australians ignorant on hepatitis Needlestick injuries risk to Australian nurses Where are Australia’s missing hep C cases?

National hep B think tank feeds back A quarter of Australians abuse alcohol Aussie treatment stories book out Hep C prisoner could sue ACT government Sydney doctor honoured for taking law into his own hands Sydney doctor recognised for her work at sharp end Sydney injecting centre and NSW elections Lawsuit filed over Melbourne hep C doctor Melbourne liver cancer treatment hailed More funds for Melbourne liver transplants

5 5 6 6 7 7 8 8 9 9 10 10 11 11 12 12 13 13 14 14 14 15 15 16 16 16

Features The hep C virus: up close and personal 18 Recovery from hep C treatment 24 Peer distribution: the future for NSPs? 26 The state of hep C treatment in NSW 29 All you need to do is ask: HIV/HCV peer support 36 On reaching four score plus five 40 Growing older with hep C 43 My story Kelly’s story: my unorthodox treatment

22

Opinion Portugal: a solution to drugs?

Clincher argument calls for courage Gene patenting: producing profits or cures?

32 34 38

Promotions Twitter hepatitis news updates New hep C bookmark doesn’t discriminate

6 7

4 www.hep.org.au

Hep Connect volunteer recruitment 21 CHI study into Australian people with hep C 21 St Vincent’s Hospital viral hepatitis trials 35 HALC legal centre 35 Sydney Central support group 35 Workforce Development Program 43 Hep C bookmarks 44 Hepatitis NSW website 44 Transmission Magazine 45 Hep Connect peer support service 45 The most precious gift 58 Paediatric viral hepatitis clinic 58

Research updates Depression often overlooked in hep C 46 Resistance to new treatments 47 Disclosing hep C status in everyday situations 47 Tumeric fights liver damage 48 Silibinin prevents reinfection after hep C related liver transplant 48 Golgi could be first reliable marker for liver cancer risk 49 Low reinfection rates after combo treatment among people who inject drugs 49 Diabetes is leading cause of US liver cancer 50 High fructose corn syrup linked to liver damage 50 Telaprevir’s success among non-responders confirmed 51 Latest telaprevir trial shows 75% cure rate for genotype 1 51 Why are men more prone to liver cancer?

52 Hep C treatment in drug treatment clinics: perceptions of clients and health workers 52 Two-weekly dosing with microsphere interferon 53 Hep C and solvent use among Canadian Aboriginal people who inject drugs 53 Regular features A keyhole to our work – Awareness Week 2 Q&A – Quality of complementary medicines 17 Harm reduction poster – Tourniquets 30 The little book of hep B facts 33 Membership matters 41 Hello Hepatitis Helpline – household transmission 42 A historical perspective (from September 1994) 41 Interferon-based treatment 54 Complementary medicine 55 Support and information services 56 Do you want to help us?

58 Upcoming events 58 Complaints 58 Membership form / renewal / tax invoice 59

letters When a trial becomes a trial

Hep C education questions

It’s nearly a decade since the Medically Supervised Injecting Centre (MSIC) opened in Kings Cross, Sydney. It is one of about 90 supervised injecting centres around the world. The scientific literature (research studies from around the world) shows not only significant benefits of supervised injecting centres, but also the absence of harms. They reduce deaths and injury from drug overdose, reduce public injecting, facilitate referrals into treatment for a group of extremely marginalised people often when no other health services can, and do not increase crime or drug use. The Sydney MSIC has also been shown to be extremely cost effective.

As a relatively new hep C educator, there are a couple of questions that frequently come up for me among educational and awareness groups that I run.

Critics of the centre have sometimes pointed to the centre’s record on referrals, saying it does not do enough. Yet all clients are offered assistance, and 80% of those attending the service frequently have accepted a referral to drug treatment. So the more frequently one uses the service, the more likely they are to accept a drug treatment referral – confirming we promote treatment, not continued drug use.

•

The MSIC has also responded to a lack of publicly available treatment places in the local area, and in 2009 began a coordinated liaison project with the Langton Centre (a nearby drug treatment agency).

Funded by NSW Health, clients from the MSIC are given priority access to a pharmacotherapy prescriber.

Results show that an impressive 75% commence treatment, and retention in treatment at three months is 66%. The literature shows that retention rates for uncomplicated clients are slightly less than this, so given the chaotic nature of most MSIC clients, this is testament to the project’s success.

Currently the legislation allowing the MSIC to operate (an amendment to the Drug Misuse and Trafficking Act 1985) has been extended on multiple occasions and is due to be heard before NSW Parliament again in October 2011. As a clinician, I do ask myself why legislation has to be passed in order for an established health service, backed by solid evidence, to operate.

Surely a trial should be just that – a temporary period during which necessary research is conducted. I note that (yet) another evaluation on the Sydney MSIC is due to be handed down by KPMG later this year. But how many reports will be needed? I would hope that common sense may at some point prevail.

•

Dr Marianne Jauncey Medical Director, Sydney MSIC (please go to www. sydneymsic.com for more information).

Is there any established relationship between hep C viral load and symptoms?

For those people who develop cirrhosis and liver cancer, is there any established indication about lifestyle or environmental factors playing a part or is genetic susceptibility the major factor?

Raymond Paterson, Cultural Diversity Educator (Vic) We’ve asked Brad Colbourne, from the Hepatitis Council of QLD, to answer Ray’s first question...

Your first question is a good one Ray and unfortunately I think that most people I speak to are mistaken about the answer.

I put the question to Dr Graeme Macdonald back in March 2008: “Is there any correlation between viral load and symptoms, i.e. are people with higher viral loads more likely to experience increased symptoms or severity?”

He replied saying that the research hasn’t been properly undertaken and that research to date suggests that people’s viral load isn’t correlated with their level of symptoms.

Regarding Ray’s second question, there are two important Australian texts that list predictors of cirrhosis and end-stage liver disease: Hepatitis C, other liver disorders and liver health: a practical guide (2002), and Hepatitis C: an expanding epidemic (2009). These books list the following factors as strong predictors of worse hep C outcome: heavy alcohol intake, older age at infection, male gender, coinfection with hep B or HIV.

The Hep Review Edition 70 September 2010 5

news

Image courtesy of Google Images

Only four new cases of hep B in Cuba Cuba – The mass and systematic immunisation campaigns with Heberbiovac HB, a Cuban vaccine developed in the early 1990s has almost seen the elimination of acute hep B on the island.

There were 2,194 people diagnosed with hep B in Cuba in 1992; 1,344 in 1997; 34 in 2006; 17 in 2007; and 18 in 2008. Only four cases were reported in 2009.

Telaprevir marketing deputy job advert

The monitoring of positive cases of hepatitis is done by the National Reference Laboratory of the Pedro Kourí Tropical Medicine Institute, where hepatitis diagnoses are also confirmed.

USA – In the June 2009 edition, we reported that US-based Vertex Pharmaceuticals were seeking a Director of Marketing for their upcoming rollout of Telaprevir, the new treatment for hep C (to be used in combination with pegylated interferon and ribavirin).

The strategy followed by the Cuban Public Health Ministry involves the immunisation of all newborns, people of other age brackets, and people in selected territories. The entire population under 28 years of age is protected against this disease.

We can now report that they are subsequently also recruiting for an Associate Director of Marketing.

Health authorities said that the prevention of perinatal infection when pregnant women are hep B positive began in 1992. Since then, followup studies have been carried out on the children of mothers carrying the virus.

It’s further evidence of the push to get the newly emerging ‘small molecule’, ‘protease inhibitor’ type treatments into the marketplace.

• See http://tinyurl.com/2eyacfk (3 July 2010).

• Abridged from http://tinyurl.com/2gxku6w (10 April 2010).

Vertex are seeking approval for Telaprevir with in the US and Europe. Once these approvals are given, it is expected that Vertex will seek similar approval elsewhere, including here in Australia.

We publish lots more hep C related news on our website.

Do you want daily updates on our website news items?

Just follow us on Twitter You’ll get the first 140 characters (a sentence or two) and a link to each news item as they are put up daily on our website. You’ll also get the link to the original source of the news item.

It’s as easy as “one two three!”

1) Open a Twitter account.

2) In Twitter, click on “find people” and search for “hepCnsw”.

3) Click on the “follow” button.

6 www.hep.org.au

news promotions Hep-enhanced Gregg Allman explosive devices recovering from UK – The Taliban are burying dirty needles liver transplant with their roadside bombs in a bid to infect British troops with HIV, The Sun newspaper has reported.

Syringes and razor blades are reportedly hidden near explosive devices, pointing upwards to prick bomb squad experts as they hunt for devices.

They are feared to be contaminated with hepatitis and HIV. And when the bomb goes off, they become deadly flying shrapnel.

USA – The rock and blues sensation, Gregg Allman, is in the recovery process after undergoing a successful liver transplant at the Mayo Clinic in Jacksonville, Florida.

Over the past three decades, Allman has battled drug dependence and hep C. In 2007, he started treatment for hep C but, subsequently, a liver transplant was considered necessary.

The tactic, used in the Afghan badlands of Helmand, was exposed by British ex-Army officer Patrick Mercer.

Gregg Allman had been on the transplant waiting list longer than average, until doctors found a suitable liver for him.

“Are there no depths to which these people will stoop? This is the definition of a dirty war,” Mercer said.

It is expected that Gregg Allman will have to stay in hospital for almost a week. However, doctors allowed him to attend his daughter’s wedding on July 26, this year.

All UK Royal Engineer and Royal Logistic Corps bomb search teams have been issued with protective Kevlar gloves.

• Abridged from http://tinyurl.com/2euoszx (24 July 2010).

• Abridged from http://tinyurl.com/2cz3kqj (9 June 2010).

New hep C bookmark doesn’t discriminate Our fourth bookmark (far right) has recently hit the streets and we’re seeking your help in distributing it.

We send them to many schools, libraries and bookstores, but can’t cover all outlets. If you think you can help distribute them in your local area, please let us know.

For more info, please see page 44.

Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream else e someon ion For more informat is about how hep C transmitted, visit g.au www.hepatitisc.or or call the Hep C Helpline (see over)

Hep C is a serious illness caused by a tiny virus (germ) that damages the liver Hep C is transmit ted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques.

To find out about safer tattooing and piercing, visit

www.hepatitisc.o rg.au or call the

Hep C Helpline (see over)

Don’t discri

minate

Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds.

Hepatitis C is People with hep C come from all bac kgr ounds. hard to catch. accurately ass You can’t ume anythin about them. g It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the using or workplaces, the same cup if you avoid bloodto-blood con same knives and forks. tact with oth er people, you are not at risk .

It is transmitted when So if infected blood from one hep you find out someone has C, support the person gets into the m and don’t dis crim ina te against the bloodstream of someone m. else.

For more info rmation For more information about about hep C visit www.hep.org hepatitis C visit .au or g.au call the www.hepatitisc.or Hepatitis He or call the lpline (see over) Hep C Helpline (see over)

The Hep Review Edition 70 September 2010 7

news French faux injecting facility France – In order to promote debate and discussion on the issue of Supervised Injecting Facilities in France, a group of organisations “opened” one in Paris on World Hepatitis Day, 19 May, 2010.

The facility was equipped with sterile drug consumption material and supervised by health professionals, although drug users were not allowed to use the premises due to French drug regulation.

Many journalists, attracted by what they believed to be an illegal action (it was not mentioned in the press release that drug use would not be allowed) came to visit the SIF. They were able to have discussions with health professionals and discuss harm reduction – leading to generally positive opinions toward the topic in their media reports.

This media action was a successful part of an ongoing lobbying campaign aimed at establishing a SIF in Paris. Numerous appointments with political leaders led to two important decisions.

Health Minister Roselyne Bachelot announced that such an experiment would be allowed depending on the project gaining support of a national scientific expert committee (INSERM) and the city council of Paris sponsoring a seminar on SIFs – aimed for elected representatives of several French cities.

This action demonstrates that harm reduction is an attractive topic for the media and politicians, particularly when activists can use sensationalism.

• Abridged from http://tinyurl.com/2f3kmft (20 May 2010).

8 www.hep.org.au

US “ends” its war on drugs Ireland – The United States has “ended” its war on drugs and is now moving its focus to prevention and treatment, the US drugs chief has told Irish drug officials.

President Barack Obama’s drugs adviser Gil Kerlikowske held a series of meetings yesterday with Irish Drugs Minister Pat Carey, Garda (Police) Commissioner Fachtna Murphy and Department of Justice secretary-general Sean Aylward.

Kerlikowske, himself a former police chief, said the US had formally ended its much heralded and hugely expensive “war on drugs.”

“We’ve talked about a war on drugs for 40 years – since President Nixon. I’ve ended that war,” said Mr Kerlikowske, director of the Office of National Drug Control Policy (ONDCP).

The Obama administration is increasing its budget for demand reduction (education and rehabilitation) by 6.5%, bringing it to A$6.4 billion but they are still spending A$17.6 billion on supply reduction (customs, policing and prisons).

Mr Kerlikowske said internationally, the US was focusing less on crop eradication in Afghanistan and Columbia. He said the aim in Afghanistan was now on encouraging farmers to grow alternative crops.

• Abridged from http://tinyurl.com/2aonuqn (26 May 2010).

news

Gardaí need better education about diseases

Bollywood’s Amitabh Bachchan has cirrhosis

Ireland – A High Court judge has ruled that there is a lack of knowledge among members of An Garda Síochána (the Irish police service) about how HIV, hep B and hep C are transmitted.

India – Indian movie superstar Amitabh Bachchan has revealed that he has cirrhosis of the liver and requires regular medical monitoring.

Ms Justice Mary Irvine has said gardaí appearing before her, seeking compensation for being put at risk of these diseases had a significantly inflated view as to their potential risk of catching the diseases. She said this was notwithstanding the education programme available to them.

Ms Justice Irvine made her comments in a judgment on three test cases relating to so called ‘fear of disease’ claims. In each case the garda was bitten or spat on and had been afraid of contracting HIV or hep C. Justice Irvine ruled that the gardaí suffered a recognisable psychiatric condition due to a fear they might contract a virus as a result of a malicious assault. But she said the court had heard the risk of being killed driving was very much greater than the risk of contracting HIV or hep C after an assault.

She said that if accurate information and adequate reassurance could be provided to gardaí as to the true nature of the diseases, the Minister for Justice should not be faced with claims for compensation based on a fear of contracting them.

The 67-year-old star of Bollywood, the name given to India’s prolific movie industry located mostly in Mumbai, recently disclosed news of his illness on his blog.

Bachchan said he developed cirrhosis after getting a tainted blood transfusion after a film accident.

The star says he ruptured his spleen in 1982 during a fight scene for the movie Coolie. He had to be hospitalised and that’s when he got a blood transfusion that gave him hepatitis, which caused excessive scarring of the liver leading to cirrhosis.

He said 25% of his liver had been destroyed by the condition, which is usually associated with alcoholism.

“Now since the liver and any ailment associated with it is extremely sensitive, I have to be under constant vigil and monitoring,” he wrote, saying the cirrhosis was only discovered about eight years ago.

Known as the “Big B,” the actor is a revered figure in India and news of his illness has already caused much worry among his numerous fans in his homeland and around the world.

Justice Irvine also found that the knowledge of GPs in relation to hep B, hep C and HIV may still be significantly less than that of specialist consultants.

The veteran star of about 180 films still acts in a few movies every year. He is also the father of film star Abhishek who is married to actress Aishwarya Rai.

She said that in some instances unnecessary testing for the viruses was carried out in circumstances where the Gardai’s risk of contracting them was zero.

• Abridged from http://tinyurl.com/2fqy5fa (25 April 2010).

• Abridged from http://tinyurl.com/2bn3py9 (15 June 2010).

The Hep Review Edition 70 September 2010 9

news Two new hep C drugs will slug it out

One man gets new liver, other man gets old one

USA – The race between Merck and Vertex – which is partnered with Johnson & Johnson – to gain approval of a new hep C therapy is coming down to the wire. And the stakes are enormous.

USA – Richard Gross was sure that his defective liver would kill him by Christmas. He’d lost 20kg, he was weak, and he could no longer count on his once-strong runner’s legs to support him.

Currently most hep C patients haven’t used existing therapies. Those who do seek treatment consume around A$2.2 billion a year in drugs, globally. A whole host of people with hep C have been “self-warehoused”, waiting for new drugs to come onto the market.

Three weeks after a liver transplant, the Wichitan hopes for a long, healthy life. So does the man who got Gross’s liver in Kansas state’s first “domino” transplant.

Geoff Porges, an analyst with Sanford C. Bernstein, says that the approval of new drugs could expand the market to A$11.5 billion in just five years.

Merck’s boceprevir and Vertex’s telaprevir – a pair of protease inhibitors – are gaining the most attention for now, with applications to the US Food and Drug Administration planned before the end of 2010. The winner of the race, says Porges, is expected to net major gains as many of those warehoused patients, as many as one in five in many practices, come down off the fence to try the therapy.

The next step in the process will be the arrival of polymerase and NS5A inhibitors, a second wave of hep C drugs now in the pipeline. New drugs for treating hep C were in the spotlight during the annual meeting of the European Society for the Study of the Liver in Vienna.

• Abridged from http://tinyurl.com/2aaasug (19 April 2010).

Gross, a retired home builder, has familial amyloidosis, a rare disease in which his liver doesn’t process a protein correctly and causes damage to other body organs. It can’t be cured; the only treatment is a transplant.

He had no idea anything was wrong until about two years ago. This past summer, unable to find a reason for his digestive problems and leg pain, he went to the Mayo Clinic in Minnesota.

Gross, 66, was added to the transplant list. He began a life of waiting, always ready to be on the way within 30 minutes. Later, he was also approved for transplant on the Kansas University Hospital liver transplant waiting list.

Other than its familial amyloidosis defect, Gross’s liver was healthy. In someone else, it could work for 30 or 40 years before signs of organ degeneration appeared.

When the Grosses got their call on March 26, this year, so did Angel Morillo of Kansas City, a 56-year-old with liver cancer.

Surgery began around 3am, March 27. Gross was prepped to receive the liver of a deceased patient. As Gross’ liver was being removed, Morillo was in surgery to make sure his cancer hadn’t spread. If it had, a fourth patient was waiting.

• Abridged from http://tinyurl.com/29h83w3 (20 April 2010).

10 www.hep.org.au

USA – Booted from Dancing with the Stars, Pamela Anderson is turning her attention to Washington where she hopes to do the tango with a handful of important lawmakers over legislation to stop the testing of drugs on animals.

Anderson, who has hep C, is calling for support to back legislation to ban experiments on chimpanzees and instead support human-based research. The legislation is called the Great Ape Protection Act, H.R. 1326.

In letters to Rep. Henry Waxman, chair of the House Energy and Commerce Committee, and Rep. Frank Pallone, who chairs a health subcommittee, the ex-Baywatch star and supporter of People for the Ethical Treatment of Animals begs for an end to the testing.

“As one of the more than three million Americans living with hep C, I am writing to ask that you take steps to end ineffective and cruel research using chimpanzees and direct federal funds to modern, human-based research methods that will be more effective at finding a vaccine and treatment for hep C and other deadly diseases,” writes Anderson.

“I implore that you encourage the National Institutes of Health and other agencies to invest in more effective and efficient human cell based technologies that are more likely to yield successful results.”

• Abridged from http://tinyurl.com/29q5ee2 (14 May 2010).

Not sure how you feel about the issue? For further info, see Seeking sanctuary: what happens to hep C research chimps? (ED55, page 15) http://tinyurl.com/2e6ft9v

Image courtesy of Google Images

Pamela Anderson fights for chimps

news

Too many Aussies ignorant on hepatitis Australia – The vast majority of Australians have a disturbingly low knowledge of heps B and C, according to a national survey conducted by Hepatitis Australia.

The survey found most people do not know hep C is curable, nor are they familiar with the common symptoms of the diseases.

Eighty to 85% of the 1,000 people surveyed around the country did not know heps B and C can cause cancer.

Forty-five per cent wrongly believe hep C can be transmitted by saliva, while 68% mistakenly think it is sexually transmitted.

“Hep B on the other hand is a sexually transmissible infection, yet only 56% of respondents knew this,” Stuart Loveday, president of Hepatitis Australia, said.

More than 80% of respondents feel more public education about hep B and C is needed.

“A government-funded social marketing campaign is desperately needed to address the confusion if we are to stem the 10,000 new infections occurring annually within Australia, improve current treatment rates and enhance the health and wellbeing of people with viral hepatitis,” Mr Loveday said.

• Abridged from http://tinyurl.com/24xckfl (17 May 2010).

The Hep Review Edition 70 September 2010 11

news Needlestick injuries risk to Australian nurses

Where are Australia’s missing hep C cases?

Australia – Nurses are demanding government funding to prevent needlestick injuries, saying their lives are being put at risk because of inaction on the issue.

Australia – Around 90% of people in Australia with hep C have not received treatment, despite the potential for cure, a report launched during Hepatitis Awareness Week shows.

The Australian Nurses Federation (ANF) says there are more than 18,000 reports of injuries caused by syringes or other sharp items in Australia each year.

A meagre 2% of the 220,000 Australians with chronic hep C receive treatment each year, exposing the country to substantial future health and economic costs, a new report into the disease shows.

It says nurses who suffer needlestick injuries risk contracting heps B or C, or HIV. The ANF wants the Federal Government to spend $50 million on a program aimed at reducing the risk, and federal secretary Ged Kearney says state and federal governments should fund an education campaign and introduce safer needles.

“There are devices out there whereby once you have injected a patient and you remove the needle from the patient, the needle or the sharp bit actually retracts back into the needle itself,” she said.

“Most of the injuries occur when nurses prick themselves while disposing of needles or doing the dangerous task of recapping.

“We don’t mind that we invest in fire safety outfits for firemen. Nobody questions buying bullet proof vests for policemen if they have to go into dangerous situations. So why are we not using these devices to protect nurses and other health care workers?”

• Abridged from http://tinyurl.com/35zmy7o (4 May 2010).

The study, Epidemiological and economic evaluation of hepatitis C treatment uptake in Australia 2010, by the National Centre in HIV Epidemiology & Clinical Research (NCHECR), found that the low uptake of treatment was at odds with hep C’s status as a curable disease.

“If annual treatment rates are increased three- to four-fold, to about 12,000 people a year, the number of new cases of liver failure and liver cancer, liver transplants and liver-related deaths over the next 30 years would drop by about 20%,” report co-author Dr Rosie Thein said.

This would translate into long-term savings of about $274 million over the same period, mostly in patient and family time costs.

“Hep C is already the leading cause of liver transplant in Australia, and the burden of disease will continue to grow and become more costly to address unless urgent action is taken to improve the current low treatment uptake,” said Helen Tyrrell, CEO, Hepatitis Australia.

Despite having a cure at hand, access to appropriate hepatitis C treatment services remains limited for many people, Dr Thein said. “There appears to be considerable scope for expanding the treatment of hepatitis C and delivering substantial health and economic gains to individuals suffering from the effects of the virus in Australian settings,” she said.

• Abridged from http://tinyurl.com/2bq7q6s (18 May 2010).

12 www.hep.org.au

news

National hep B think tank feeds back

A quarter of Australians abuse alcohol

Australia – The Australasian Society for HIV Medicine (ASHM) held a strategic Hepatitis B Think Tank in Sydney on Friday, 18 June. The focus of the think tank was on engagement - trying to get a better and broader understanding of the issues of acute and chronic hep B and workforce issues.

Australia – Nearly one-quarter of the general population – and one-third of men – are likely to develop some form of drinking problem during their lives. The figures are part of new research that shows 18% of Australians will abuse alcohol, and a further 4% will become alcohol-dependent at some point.

It was not designed to address clinical guidelines or access to treatment – issues that may be the focus of a future similar meeting.

Yet continuing stigma and limited services mean only a fraction of those receive help, with four out of five cases going untreated.

Three key areas emerged within discussions at the Think Tank:

The report, by experts from the National Drug and Alcohol Research Centre at the University of NSW, found the rate of alcohol problems in Australia is one of the highest in the world, being similar to that in the US and New Zealand.

• Increasing the coverage of vaccination.

This will need to rely on the prompt listing and identification of existing functional and effective strategies and include: Antenatal (and maternal) screening and vaccination; Household contacts of people with chronic hep B, and Systematic vaccination of priority adult populations.

• Establishing practical models of care which allow for the identification, monitoring and referral of people with chronic hep B; and • Appropriate workforce development (which must precede or be rolled out in tandem with the above), which provides appropriate information on and facilitates prevention, vaccination, diagnosis, treatment and care.

The Hepatitis B Think Tank was an initiative of ASHM and funded by the Commonwealth Department of Health and Ageing. It aimed to help shepherd in the new National Hepatitis B National Strategy and to complement the strategy’s Implementation Plan.

• Abridged from the report’s executive summary.

To access the full report, http://tinyurl. com/2dte2c2

Study lead author Maree Teesson said alcohol problems still had a “terrible stigma”.

“People are much less likely to want to own up to having a problem with alcohol than they are about other physical or mental illnesses, yet their abuse of alcohol has serious consequences for them personally,” she said.

Paul Haber, the director of the drug and alcohol service at Sydney’s Royal Prince Alfred Hospital and a co-author of the paper published in the journal Addiction, said the high rate of alcohol problems uncovered was a surprise, while the low levels of treatment were a disappointment.

The country’s “alcohol-consuming culture” was widely acknowledged as encouraging drinking problems, Professor Haber said.

“Alcohol is cheap and readily available,” he said.

Professor Haber said it was paradoxical that while many have no embarrassment about drinking large amounts of alcohol, admitting to an alcohol problem was still perceived by some as shameful.

• Abridged from http://tinyurl.com/29sevvj (10 August 2010).

The Hep Review Edition 70 September 2010 13

news Aussie treatment stories book out Australia – A treatment stories book has been compiled by professional writer Charlie Stansfield and launched during Hepatitis Awareness Week 2010.

Sydney doctor honoured for taking law into his own hands

The book illustrates the experiences of 12 people with hep C, and includes honest accounts of their time dealing with hep C treatment.

Australia – By his own admission, Alex Wodak’s stellar career has been little more than a series of accidents, most serendipitous.

The book is highly recommended to anyone considering hep C treatment or acting as a support person for someone on treatment.

But now, being appointed a Member of the Order of Australia for services to medicine and public health, he clearly remembers when his career almost slipped through his fingers.

• Downloadable from http://tinyurl. com/27fp252

Hep C prisoner could sue ACT government Australia – The ACT Government is facing potential legal action from a prison inmate who contracted hep C while in custody. The inmate is the first person to contract the disease at the Alexander Maconochie Centre (AMC).

Wodak was the director of drug and alcohol services at St Vincent’s Hospital, in Darlinghurst.

The 1980s AIDS epidemic was cutting a swathe through Sydney, making its presence felt in the streets around the hospital where thousands of young gay men and injecting drug users lived.

Colleagues had predicted about 3,500 men living in inner Sydney had been infected with HIV in about 18 months in the early 1980s, and many were drug users. ‘’I saw a terrifying cascade and I was really frightened. I didn’t know what to do.’’

He wrote submissions to the federal government, pushing for permission to run a pilot needleexchange program. When permission did not come, Wodak launched one anyway.

Health Minister Katy Gallagher confirmed the infection at a budget estimates hearing in May.

“It was illegal but ... the law was wrong and the only way to change that law was through civil disobedience. I could see a cataclysmic epidemic taking place and I just had to do it.”

“It appears that one detainee has evidence of the transmission of hep C whilst at the AMC, so this is our first case where there is evidence to support transmission of hep C whilst in custody,” Ms Gallagher said.

Fortunately for Wodak, police agreed and did not press charges. Within two years all Australian states and territories were offering needle and syringe programs and now about 32 million syringes are provided nationally each year.

Prisoners are offered screenings for hep C and HIV when they arrive at the prison, every three months and when they leave.

“But the fight is far from over. The war on drugs was a colossal, expensive failure, but we have committed to building a new prison every year for the next seven years. When will Australians cotton on that you can’t imprison your way out of social problems?’’ he said.

• Abridged from http://tinyurl.com/24u3oay (19 May 2010).

• Abridged from http://tinyurl.com/242yasr (14 June 2010).

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Sydney doctor recognised for her work at sharp end Australia – The founder of Sydney’s controversial medically-supervised injecting centre has been recognised for her work at the “sharp end” of public health policy.

Ingrid van Beek, a medical doctor, academic, lobbyist and author has been appointed a Member of the Order of Australia (AM) in the 2010 Queen’s Birthday Honours list.

Dr van Beek, who is best known for her work at the Kings Cross injecting centre, which opened for trial operation in 2001, said she was “honoured” to be recognised for service to public health and community medicine.

Her specific areas of focus include the promotion and provision of primary care for people affected by mental health issues, substance and physical abuse, and HIV/AIDS, and to medical education.

“I am very honoured to be given this award – it is wonderful that my work at the sharp, and often controversial end of the drug and alcohol field has been recognised in this way,” Dr van Beek told AAP in a statement.

Dr van Beek resigned from her role at the Kings Cross centre in 2008, but remains director of the nearby Kirketon Road Centre, which specialises in medical, counselling and social welfare work.

She has also been a consultant to the World Health Organisation.

In 2004 she released a book, In the Eye of the Needle: Diary of a Medically Supervised Injecting Centre, detailing the early years of the Kings Cross trial.

news Sydney injecting centre and NSW elections Australia – The NSW government is set to make a decision on the future of the controversial medically supervised injecting centre at Kings Cross before next year’s election, with an evaluation soon to be handed to Deputy Premier and Health Minister, Carmel Tebbutt.

The centre has operated on a trial basis since its establishment nine years ago following the NSW Drug Summit under former premier Bob Carr. The licence for the centre is not due for renewal until October, 2011 – seven months after the state election in March 2011.

However, the NSW health department has spent $240,000 ordering an independent report from consultant KPMG on whether the centre is achieving its objectives.

Up until the end of February 2010, more than 3,500 drug overdoses had been successfully managed at the centre without a fatality, according to its medical director, Dr Marianne Jauncey.

Professor John Kaldor, from the National Centre in HIV Epidemiology & Clinical Research was involved in previous reviews of the centre. He said that it is no longer necessary to question the centre’s right to exist.

The Rev. Harry Herbert, executive director of Uniting Care, the licensed operator of the centre, has also called for an end to the trial status.

• Abridged from http://tinyurl.com/2elo6w7 (16 June 2010).

Early in 2010, Dr van Beek received her doctorate in medicine from the University of NSW for her thesis Responding to Contemporary Public Health Dilemmas Among Vulnerable Populations in Inner Sydney.

• Abridged from http://tinyurl.com/2b85z5p (13 June 2010).

The Hep Review Edition 70 September 2010 15

news Lawsuit filed over Melbourne hep C doctor Australia – The number of women participating in a multimillion-dollar lawsuit against an anaesthetist who allegedly infected them with hep C has soared and is expected to rise further.

Law company Slater & Gordon yesterday revealed it was representing 17 women who allege they were infected by Dr James Latham Peters while he worked at Croydon Day Surgery.

Dr Peters was suspended on 15 February 2010, two weeks after the medical board was notified and two months after the Health Department became aware that three women who had contracted hep C had been to the Croydon clinic.

Last month, The Age revealed Dr Peters previously received a suspended jail sentence for forging more than 100 prescriptions for the drug pethidine in 1996.

Slater and Gordon has sent the Croydon Day Clinic a letter of demand outlining allegations of negligence. The Medical Practitioners Board of Victoria also faces a lawsuit from the women.

• Abridged from http://tinyurl.com/25bhmwn (12 May 2010).

Melbourne liver cancer treatment hailed Australia – A new, revolutionary cancer treatment pioneered in Melbourne could soon emerge as a global lifesaver. More than 100 Victorians with inoperable liver cancer have successfully been treated with the SIRT (selective internal radiation therapy).

The treatments are part of a Melbourne-led international human trial of SIRT, used in conjunction with the chemotherapy drug sorafenib.

For the procedure, tiny radioactive beads – about one-third the width of a human hair – are injected into an artery near the groin. The beads then lodge in the liver releasing a radiation dose over a number of days, shrinking tumours.

A Victorian woman suffering from incurable liver cancer has undergone the therapy and Associate Prof Peter Gibbs, a medical oncologist from the Royal Melbourne Hospital, believes she is cured.

“Her tumours slowly disappeared and she remains tumour free. I am convinced that she is cured,” said Prof Gibbs.

In about 5% of patients treated with SIRT tumours disappeared while in most other cases the treatment was prolonging lives, he added.

• Abridged from http://tinyurl.com/2aclzay (13 June 2010).

More funds for Melbourne liver transplants Australia – Extra funding will allow Melbourne’s Austin Hospital to form a second dedicated surgical team to do more liver transplants – including split liver transplants, where one organ is used to save the lives of both an adult and child.

The medical director of the liver transplant unit, Professor Peter Angus, said demand for adult transplants was growing due to increased incidence of liver diseases, including chronic hep B and C.

The Austin is the only provider of liver transplants in Victoria, Tasmania and southern New South Wales.

It carried out 54 transplants last financial year.

While the extra surgical resources will help make the most of donor organs, Mr Andrews said Australia, with one of the lowest rates of donation in the developed world, also needed more donors.

Victoria Health Minister Daniel Andrews yesterday announced an extra $1.4 million a year in recurrent funding for the transplant unit.

• Abridged from http://tinyurl.com/27wdf6v (14 July 2010).

16 www.hep.org.au

news

Q&A:

How do you know if a complementary medicine is good quality?

A good place to start is looking for an Australian Register of Therapeutic Goods label.

All medicines – whether complementary, overthe-counter or prescription – that are entered onto the Australian Register of Therapeutic Goods (ARTG) will include a unique AUST L or AUST R number on the label. This labelling is required for the lawful supply of a therapeutic good in Australia.

The L refers to listed medicines (primarily complementary medicines) and the R to registered medicines (primarily prescription and over-the-counter medicines) and should be readily identifiable on the label.

Where the medicine label does not include an AUST L or AUST R number the TGA has not evaluated the quality, safety or efficacy of the

product and therefore the safety of the product is unknown. Products without an Australian Register number may have been supplied illegally if bought in Australia, purchased over the internet by the consumer or have been imported from overseas for personal use.

The identification of the AUST L or AUST R number and its concomitant entry on the ARTG can reassure consumers and practitioners of the product’s overall safety.

You should seek the professional advice of experienced health care workers in order to find out which particular complementary medicines might help or harm you.

• Abridged from http://tinyurl.com/22mppff (1 June 2010).

For more information, please contact the Hepatitis Helpline (details on page 3).

The Hep Review Edition 70 September 2010 17

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The hep C viru We know a lot about what it does and how it affects us

T

he hepatitis C virus (HCV) is a very clever little creature. It has spread worldwide, affecting humans – and one type of chimpanze – able to outwit most people’s immune system due to it’s “unstable” RNA (ribonucleic acid) genetic make up.

All the hepatitis viruses are named so because they affect the liver; apart from that, the viruses don’t have much in common. For example, HCV is more closely related to the dengue fever virus than to the hepatitis A and hepatitis B viruses.

The physical size of a virus is measured in nanometres; a nanometre is a billionth of a metre.

Comparatively, HCV is a small virus, measuring about 50-80 nanometres. This small size made its discovery difficult as it could not be seen under a microscope and was identified through geneticbased research.

Different strains of the same virus are referred to as genotypes. HCV has six main genotypes, of which some are broken down into sub-categories labelled a, b, c, etc. The different genotypes are generally found in particular parts of the world; it is important to know the genotype of the virus, as this determines how the virus will respond to treatment. The most common genotypes in Australia are 1a, 1b and 3.

“It’s life Jim, but not as we know it” Trying to see a single hep C virus on a beachball would be like sitting on the moon and trying to see a single beachball on Earth.

Images via Google Images.

Put another way...

Picture a tiny grain of salt in the palm of your hand...

18 www.hep.org.au

Inside one grain of salt you could fit 56 female human eggs...

Inside one human egg you could fit 915 fog particles...

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us: up close and personal but Adrian Rigg takes a close look at the hepatitis C virus and explains what it actually is?

How it was discovered

HCV and the liver

Although perhaps not very imaginatively named, the hepatitis viruses show their order of discovery. In the 1970s, a study of people who had undergone blood transfusions showed that some had contracted a virus that was neither hepatitis A nor hepatitis B. It was not until 1988 that the virus was discovered and named hepatitis C; its discovery was made possible through the study of the virus’s genes and cloning of the genetic material.

Viruses can only replicate within a host body; HCV can stay alive outside the human body for up to four days, but cannot reproduce itself. When it gets into the bloodstream, HCV penetrates healthy liver cells, copies their genetic make-up, and then emerges from the cell. However, it makes mistakes in copying, some of which help the virus avoid being detected in the bloodstream; this is called mutation.

HCV can mutate faster than most viruses, changing in response to the host’s immune system; this makes it harder for the host, and possible future hosts, to fight the virus. HCV also produces a relatively weak response from the human immune system. These are the main reasons why no vaccine has yet been developed against HCV. It also reproduces very quickly. As there may be no symptoms for years, by the time a diagnosis is made and treatment started, the virus will have reproduced enormously.

When a new drug is developed it is often patented, with profits for its use worldwide going to one company. As unlikely as it sounds, a virus can also be patented by its discoverer and effectively owned by a person or organisation.

A pharmaceutical company named Chiron, now owned by Novartis Diagnostics, took out a patent on the hepatitis C virus and also on some of the means of diagnosing it. Patents on viruses can mean big money for the owners, and today anyone undertaking research on HCV must pay a fee to Novartis Diagnostics or risk being sued. Undertaking research is expensive and time-consuming; the researcher must have good reason to believe that their research will be worthwhile, and having to pay an additional fee may discourage some research around HCV. Of course, the vast majority of research by virologists is done to develop treatments and vaccines, rather than with thoughts of profit. Work in this area requires dedication and a genuine interest in advancing knowledge, as it can take years of research to achieve results. It is only with perseverance that improvements to treatments, and ultimately vaccines, are discovered.

Inside one fog particle you could fit 37 yeast microorganisms...

Inside one yeast micro-organism you could fit 296 E. coli bacterium...

The liver is important for good health as it breaks down toxins from food, and it processes medicines and other drugs so the body can better absorb them. HCV does not always directly harm the liver; often it is the body’s immune response to HCV that damages liver cells. The immune system reacts to the presence of HCV in the liver and tries to fight it; this damages liver cells and causes swelling in the liver tissue. The liver can recover by producing new cells, but it sometimes cannot keep up with the reproduction of HCV and the subsequent damage.

In these cases, scar tissue forms and affects the liver’s ability to function; this is fibrosis. As more scar tissue builds up, cirrhosis can occur; this is when healthy liver tissue is replaced by so much scar tissue that the liver can no longer function properly.

When the liver is seriously damaged a range of liver complications can occur (this happens only in a small number of people who have hep C).

Inside one E. coli bacterium you could fit 19 measles viruses...

Inside one measles virus you could fit 87 hep C viruses!

The Hep Review Edition 70 September 2010 19

feature How treatment drugs affect it The treatment prescribed depends on the HCV genotype and on liver health; continuation of treatment depends on ongoing measurements of the success of the treatment. The most effective treatment is combination therapy – simultaneous use of peyylated interferon and ribavirin.

Pegylated interferon alone may be prescribed for people who cannot take ribavirin.

Interferons occur naturally in the body – when a virus is present, the immune system creates interferons to combat it. They increase the body’s natural defences against viruses and help stop them growing. Artificially made interferon can be used to treat cancers and viruses, as the body does not produce enough interferon to fight these conditions. When interferon is injected it helps prevent HCV from replicating, as well as helping the immune system to fight the infection.

Pegylated interferon is specially designed to be active for longer, meaning it only needs to be administered once a week; this can make a big difference to the lives of people having treatment, who would otherwise have to have interferon injections three or more times a week.

Ribavirin is used for treating viral infections; it causes mutations in RNA viruses that can destroy the virus. In combination with pegylated interferon it works to prevent the growth of HCV in the body. Ribavirin can cause birth defects and that is why both males and females undertaking treatment, and their partners, must make sure they prevent pregnancy during treatment and for six months after finishing treatment. Likewise, women should not breast-feed babies during this time.

The future The best research outcome would be a completely effective treatment and a vaccine for HCV; researchers are also striving to develop treatments which work faster and minimise side effects. It is not easy to grow human liver cells in a laboratory setting, so it is hard for researchers to study HCV; the virus’s ability to mutate also makes improving treatments difficult. The complex path of clinical research, along with the costs involved and the rigorous testing that must go with any new discoveries, means that progress is slow, but researchers around the world are successfully studying and trialling potential new treatments and vaccines.

Image by AJC, via www.flickr.com

• Adrian Rigg is a freelance health writer who regularly writes for The Hep Review adrian.j.rigg@gmail.com

20 www.hep.org.au

feature

Have you had hep C treatment?

Do you want to support others going through it?

Image by gilderic, via www.flickr.com

The Hep Connect peer support program is currently recruiting new volunteers.

For an information pack, please phone Toby or Niki on 1800 803 990.

CHI study

The CHI (Charting Health Impacts) study is about how hepatitis C affects people’s lives.

The study follows a group of people over time, looking at all the health and social aspects of life - so that community organisations, doctors and governments learn what it is like to live with hepatitis C.

Charting Health Impacts

www.chistudy.org.au

Joining the study involves taking an anonymous survey online. We then contact you in 3-6 months so you can tell us how things have changed for you.

If you have ever been told that you have hepatitis C and you want to find out more about CHI, you can check out our website at www.chistudy.org.au Let your experience count and let us know about how hepatitis C has affected you.

The Hep Review Edition 70 September 2010 21

my story

Kelly’s story: my unorthod

H

opefully my story will encourage someone to take the step to seek treatment and enjoy an active and positive recovery.

Like a lot of people, I used and abused narcotics for a number of years in my 20s, along with heavy alcohol and other drug abuse. Luckily, I lived through it and managed to finally get clean and sober about 25 years ago. This, in itself, has been a remarkable achievement for me but nowhere near as difficult as the commitment to the Pegatron treatment.

My hep non A non B was first detected by the Australian Blood Bank and a big court case ensued due to a blood recipient becoming infected. It was a horrific time as I had no idea about hep C so it was scary stuff both ways.

Fortunately I have moved on to a happy and relatively healthy lifestyle, now the mother of two boys who are in their late teens and early 20s.

Despite my best efforts we found out about nine months ago that my 21 year old also had the virus and it spurred me on to seek more information for him and myself.

My GP referred me to Concord Repatriation Hospital Liver Clinic where I proceeded to have every diagnostic treatment going, ultrasounds, caffeine tests, even the dreaded liver biopsy, which actually was fine, well would have been better had I not done shopping on the way home, but that is just me, I may be ageing but can’t play by the rules.

Thankfully my liver damage hadn’t reached cirrhosis and wasn’t too extreme, wasn’t too good either. Of course the Interferon treatment was discussed and I was educated about the Pegatron

22 www.hep.org.au

program with DVDs and reading material from the clinic and all ready for six months of medication.

Very determined to complete the treatment and hopefully encourage my eldest boy to follow suit.

Now the unorthodox side really kicks in. Along with my two boys we have horses, show jumping and pony club horses, about five of them, and they don’t look after themselves. Whilst I committed to stop riding for six months, which was a bit hard, I was happy to make the compromise but still had to feed and care for them.

Well, like everything I tackle, treatment was no different, I had lots of enthusiasm to start, actually couldn’t wait. The first month was a bit difficult until I learnt that panadol and water were my new best friends.

I worked full-time throughout and had a couple of sickies but they were often products of not slowing down as opposed to the drugs themselves.

During my time on treatment my youngest son moved to the Southern Highlands for work. Just getting him and two of his horses relocated was horrendous. Just when I thought I was in the clear, one boy and two horses down, he rang me to say one horse had gone through a fence and badly damaged itself and could I nurse him. Right, what are mums for? He dropped the horse off where I keep mine – nearly an hour’s drive from home.

At first it was an every day dressing job. Ended up doing an excellent recovery and my son was most impressed but boy the little white bucket became my best friend. I spent more time sitting at the horse’s leg like a milk maid than anything else.

my story

dox treatment Eventually I had to go down to Canberra for two show jumping competitions to help my son; try sleeping in a Mazda 121 a few hours after an interferon injection in freezing weather across a parked horse stall as the naughty horse wouldn’t stay in its yard.

Starting to get a picture of my treatment?

My son then rings and said the job is not working out – can you help me bring horses back? So back come two horses, one 18 year old and all his gear.

That worked pretty well though, because after a day at work I was able to slump into bed and he cooked dinner and delivered it to me in bed. What a bonus – can I say maybe I played on this at times? Please don’t tell him.

We then were offered a substantial sum to buy a “good” horse for my son to compete on. Sounds great doesn’t it? No, they are all over the place – Tamworth, Perth, Nowra – gosh and they were just the more interesting ones.

I had never had stress before but my friend interferon really let me know how blood counts of 100 affect your ability to deal with life in general.

We found one finally, then the wonderful experience of negotiating a sale, getting him transported, learning to deal with a huge stallion.

No I couldn’t have found a little quiet thing, had to go the whole hog. The weekend he came to Sydney was our Pony Club Jamboree, of which I just happen

to be Zone and Club President – so no getting out of this. Sweltering days, sleeping at the showgrounds... phew, looking back I wonder how did I do it?

We also celebrated my sons’ 18th and 21st birthdays during this time and they were very low-key events from the point of view of my participation – but that was fine, they will have many more milestones in their lives and were glad I was able to be there.

I think the main thing was the love and support that I received from the horse community, my work friends, my friends and family, especially my boys.

I told absolutely everyone about my hep C – hundreds of people over the time. I think I deserve a medal for being so open and honest and in turn the love and kindness has been overwhelming.

Overall my treatment was relatively problem free, thank goodness. Just lacking energy was the hardest for me to deal with, not much else happened. I lost a bit of hair, but that will grow back. I lost 12kg – what a bonus! Hopefully that doesn’t find me again.

The biggest bonus of all was no virus detected at 24 weeks. I know I could relapse but, hey, at least I know it works. I would not like to do it again but will if necessary.

Huge thanks to the staff at Concord Hospital and the Pegatron support team. Everyone was lovely.

I started riding again just before the end of treatment and found that was all good, a bit exhausting but fine. All I can say is kick on and do it, try to keep mentally and physically active, and don’t be afraid to tell the world as in my experience, people are very accepting and supportive.

•

Kelly King, 53 years young, NSW

The Hep Review Edition 70 September 2010 23

Image by flying_tiger, via www.flickr.com

My eldest boy doesn’t drive and works in the thoroughbred racing industry so starts work at 4am – I had to get up and drive him nearly every morning on top of everything else.

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Recovery from hep C treatment Finished treatment but don’t feel back to normal? Social researcher, Dr Max Hopwood, reports on an issue that can impact on some people who have finished treatment.

My study into life after hep C treatments came about through a mix of three things. First, I wanted to hear people’s perspectives on their treatment experience, particularly those whose treatment had failed them after they had time to step back and think about it. Second, I identified a gap; except for a small amount of clinical literature, mainly case reports, there are hardly any research studies into the post-treatment period. These reports show that a small number of people treated with interferon experience a persistent neurotoxicity – in other words, the effects of the drug on the central nervous system can linger for prolonged periods, making people unwell. Case reports also show that, in some instances, new symptoms can emerge in the weeks or months after treatment has finished.

Finally, anecdotal reports from people in the sector (and testimonies on various websites) indicated that some people were having problems with their health after treatment. People often described symptoms which resembled their treatment side effects.

How the study was conducted To be part of this study you had to have finished hep C treatment at least six months prior to being interviewed. I had no trouble finding people who wanted to talk about their experiences after treatment. I advertised the study in The Hep Review and Good Liver magazines, thanks to Hepatitis NSW and Hepatitis C Victoria. I was then surprised at how quickly people contacted me and how eager they were to talk about their post-treatment experiences.

However, it is important to remember when reading the results of this study that it used a small sample of people who applied to be part of the research, and as such the findings do not represent the average experience of life after hep C treatment.

Instead, studies like this one show the diversity of people’s post-treatment experiences. So although these reports are likely to be uncommon, they are important to document in order to understand the range of all possible outcomes from treatment.

24 www.hep.org.au

Brief overview of main findings Clinicians and health workers usually assume that patients will feel at least as good a month or so after treatment finishes as when they started, and probably much better if treatment clears their infection. In most cases this assumption seems to be true, but several people in my study reported that their health had not returned to pretreatment levels, and this included people who had been cured of hep C infection. Some people reported feeling so unwell at the time of their interview (at least six months after completing treatment) that they were unable to return to work, while others were finding it difficult to socialise with friends or form new relationships.

Individual accounts of well-being are influenced by many factors in a person’s life, and this type of study cannot identify all those factors. But for many participants, one explanation they had for their ongoing poor health was the continuing effects of the treatment drugs. These people perceived that the side effects they had during treatment were still happening long after their treatment had finished.

In people who did not respond to treatment, or who relapsed shortly after treatment, some thought that their ongoing ill health might also be caused by underlying liver damage from years of living with hep C infection, and the ongoing effects of infection. These are indeed plausible explanations.

Nevertheless, underlying liver damage seems unlikely to explain why some people reported feeling worse after treatment than they did before treatment.

The study also highlighted how people had difficulty dealing with the fallout of a slower-thanexpected recovery. Some were too sick to return to work when expected after finishing treatment and had run into financial problems as a result.

Some people with partners and children felt that they were not meeting their family responsibilities for long periods after treatment. Participants talked about separating from partners and/or having to repair close personal relationships which were damaged during and immediately after treatment.

Image via Google Images

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Implications of this study Some in this study were annoyed by their clinics’ disinterest in post-treatment issues and health problems; they were frustrated in their attempts to find information about the ongoing effects of treatment; they expressed disappointment in the lack of referral for medical care to address ongoing symptoms; some needed counselling for problems in re-adjusting to life after treatment; and nearly all participants wanted further support to help them get back on their feet after treatment.

For the majority in this study, their clinics provided no support after treatment. When treatment was finished, people were told not to return to the clinic. It is hardly surprising that people in this study were so concerned about finding avenues for support; they had been through a very challenging time during treatment and often they felt fragile, and sometimes ill, for months afterwards.

Could this happen to me?

How common are these types of post-treatment problems? It’s a question many people want answered.

Currently, we don’t know. We need a study that uses a representative sample of people in treatment, then measures how well people feel before they start treatment and during treatment, and compares this data with those collected six months to two years after finishing. The results could tell us a lot about the long-term benefits and risks of hep C treatment. Even if the worst problems identified in this study are only shared by a tiny minority of people, it is a risk that clinicians should warn their patients about before they start.

Ideally, after treatment is completed, feedback and support systems should be in place for people with ongoing health problems so that they can have continued medical care through their treating clinic. People need access to more and better organised information, both before and after treatment. Referral systems need to be in place at the end of treatment where people can easily access other health professionals and/or services if required, and there needs to be opportunities for obtaining further social support for those people who feel they need it.

One possible way to increase support after treatment is to develop and implement a survivorship program, similar to existing programs for cancer survivors.

A post-hepatitis C survivorship program would be available to anyone who felt they needed further medical care, information, counselling, referral or other means of support. It would aim to help people psychologically re-adjust to everyday life after treatment. In some cases it might be as little as referring people to the community-based hepatitis organisations for information, support or advice.

For others, it might mean a period of face-to-face counselling until they feel able to adjust to life after treatment or a period of further medical care until their symptoms settle down.

If better systems can be put in place to organise appropriate levels of support during and after treatment then people on opiate substitution programs and/or who currently inject are probably more likely to consider having hep C treatments.

• Max Hopwood, National Centre in HIV Social Research. This article was originally printed in Users News (ED61, Winter 2010).

The Hep Review Edition 70 September 2010 25

feature

Peer distributio

Writing for The Hep Review, Dr Peter Lavelle looks at peer dis – an approach that could dramatically reduce transmission of

A

sk anyone in preventative health care and they’ll tell you; it’s been one of the great public health success stories in Australia. That’s our needle and syringe program (NSP), first introduced in the 1980s and now a vital weapon in the fight against transmission of blood-borne viruses.

NSPs operate out of a network of pharmacies, community health centres and public hospitals, backed up by services such as mobile outreach services and vending machines, supplying needles and syringes, and, in the case of larger, dedicated NSPs, swabs, sterile water, and sharps bins for the safe disposal of injecting equipment.

And there’s no doubt they’re effective. That’s the conclusion of a team of investigators at the National Centre in HIV Epidemiology and Clinical Research, at the University of New South Wales. In a 2009 report entitled Evaluating the cost-effectiveness of needle and syringe programs in Australia, they calculated that every dollar invested in NSPs saves the health system four dollars in direct medical and hospital costs (though the true saving is actually much higher when indirect costs such as lost productivity in the workplace due to ill health from blood-borne viral disease is taken into account).

So effective have the NSP programs been that the report’s authors have subsequently recommended a doubling of the quantity of needles distributed through NSP, saying this would halve the rate of new hep C infections (estimated to be 4,000 per year in NSW).

“Regular, reliable access to sterile equipment is especially important in preventing the ongoing spread of hep C,” says Dr John Smart, a GP in Sydney’s northern suburbs who also works with hep C treatment.

“Hep C is very easy to contract if you are injecting drugs, he says. “A single use of a contaminated syringe carries about a one in two chance of transmission of hep C.” Image by vasya_li, via www.flickr.com

“So drug users can be extremely careful generally about using sterile equipment, but then one day they don’t happen to have a clean fit on hand and they use a contaminated one instead and contract the hep C virus.”

It’s these single cases of accidental transmission that need to be targeted and prevented, he says.

But what is the secret to expanding and increasing Australia’s needle and syringe programs?

26 www.hep.org.au

feature

on: the future for NSPs?

stribution of injecting equipment f hep C in Australia.

Some health workers on the ground working in NSP programs or with HIV, hep B and hep C prevention, argue that despite their success, more thought should be given as to how the NSP programs can be best expanded. Some services could be delivered more effectively, they argue.

Damon Brogan, a former manager of Savive (a large NSP in South Australia) and now Executive Officer at Harm Reduction Victoria, is one.

“It’s often hard for the general public to understand what a huge difference to drug users’ lives NSPs have made, giving them access to safe and sterile injecting equipment without having to beg borrow and steal it,” he says.

But, like many others working with NSPs, he believes that there are limitations to what the NSP model can achieve. Essentially NSPs tend to rely on drug users being there at the time the services are operating, and that doesn’t always happen, he says.

For example, most are concentrated in the inner metropolitan areas of major Australian cities.

There are far fewer generally available in outer metropolitan regions, areas like South Western Sydney, and these are often areas of high demand.

This means that drug users have to spend time and money to access NSP services. The additional cost might seem insignificant relative to the cost of the drug, but can be a critical factor if, as is often the case, drug users have had to borrow or scrape up their last $50 for a hit.

“They just don’t have the last few dollars for the train ride so they don’t bother,” Brogan says.

Furthermore, many NSP services are open only during limited hours – normal business hours are often the hours that most drug users are least active, he says.

Country areas are another big problem, he says.

Even if there’s an NSP at the local pharmacy or community health centre, many country residents are reluctant to use them, for fear of being outed.

“Everybody knows everybody else’s business in a country town – really the only people who are

going to front up to access the NSPs are people who are so well-known as drug users that they no longer care,” Brogan says.

Then there are Australia’s prisons. There are no NSPs at all in prisons, and they house a high proportion of drug users, so they are effectively incubators for blood-borne viruses. They’re arguably the biggest problem we have in bloodborne virus transmission, he says.

People doing it for themselves Still, there have been some attempts to get around these problems – for example by placing syringe and needle vending machines in areas where people are active at all hours, and some inner city NSPs offer outreach services delivering needles and syringes from mobile vans. But outreach services are unpopular with many local councils and some local communities. Vending machines are unpopular with drug users if the machines are malfunctioning or in unlit, out-of-the-way places.

Plus, they may not have the money at the time to use the machines. In any case there aren’t nearly enough of these services to meet the need.

NSP workers and drug users report that an “underground” NSP has always existed. Drug users pass on new equipment within their networks – an action called peer distribution – and this has been examined and commented on in Max Hopwood’s study, “Secondary exchange of sterile injecting equipment in a high distribution environment” (International Journal of Drug Policy 2009).

Peer to peer distribution This solution – for drug users to take on a bigger role in distributing clean needles and syringes amongst themselves – is becoming seen as a potential important initiative. The idea is that certain people who are active in drug networks will regularly visit an NSP and take home with them a large number of syringes – several hundred or more – and hand them out amongst the other members of the network. It’s called ‘peer-to-peer’ distribution, and it can fill many of the gaps that traditional NSP services are The Hep Review Edition 70 September 2010 27

feature struggling to fill, says Sione Crawford, Community Programs and Services Team Manager at the NSW Users and AIDS Association (NUAA).

“For the end user, it means they don’t have to travel as far, since they’re likely to be visiting the other members of the network anyway, either socially or to buy drugs. They trust the source of the needles and syringes, they know they can get them for free or at low cost and in quantities large enough so they won’t quickly run out,” he says.

In fact peer-to-peer distribution isn’t new. The NSP programs began in the HIV epidemics of the 1980s with drug users simply passing around clean syringes and needles to whoever needed them, says Crawford.

He says peer-to-peer distribution happens anyway in areas where there are few NSPs and where people who inject drugs have few other options.

“In country areas of Victoria, someone will arrive at an NSP and take 400-500 syringes, which the NSP is happy to provide, because it means the equipment is probably getting out to the areas where there aren’t NSPs,” says Harm Reduction Victoria’s Damon Brogan.

However, some NSP services and state Health Departments are nervous about peer-to-peer distribution and don’t tend to encourage the idea – particularly in those states such as Victoria where there are already plenty of NSP services.

“There’s a lot more interest in those states where there are fewer NSP services like WA and SA, and it’s largely out of necessity,” he says.

Legal barriers The law as it stands potentially criminalises peerto-peer distribution and this is one barrier that needs to be overcome, he says.

It’s currently illegal for one person to pass a needle and syringe to be used for illicit drug use to another, attracting a possible conviction and fine of up to $2,200 in NSW, for example.

NSP workers are allowed an exemption by applying to the Health Department in their state.

This is usually straightforward, but only applies to NSP workers. An exemption under the current law won’t cover drug users who distribute injecting equipment, says Brogan.

He says this grey area in the law is the reason why many drug users visiting an NSP will take just a few syringes and needles away with them, knowing full well they’ll probably run out, because they’re worried about possibly committing an offence. While it’s very rare for police to actually charge anyone for passing on clean needles, the fear is there nevertheless, he says.

So if NSPs were to set up more formal peer-topeer distribution programs, these grey areas in the law would have to be addressed.

Image by helter-skelter, via www.flickr.com

The law could be changed so that it’s no longer illegal to pass on injecting equipment to others;

28 www.hep.org.au

or alternatively each State Health Department could simply extend the exemption to include peer-to-peer distributors.

Community resistance?

Sione Crawford from NUAA says until the situation is clarified, it’s difficult for NSPs to contemplate expanding peer-to-peer programs because of the legal uncertainty.

But he agrees there may be reservations in the general community about the concept of peerto-peer distribution of injecting equipment.

The belief persists that giving drug users more syringes will only encourage them to inject drugs more frequently, and that it will lead to more discarded used syringes littering parks and beaches. But there’s no evidence that any of these things will happen, Crawford argues.

He says that people who use NSPs, especially the older, more experienced drug users who would play a central role in peer-to-peer distribution, tend to be very careful about how syringes and needles are discarded. In any case they would be trained in safe equipment disposal, as well as in how to teach drug users about safe injecting and blood-borne virus prevention, and how to access detox and treatment centres.

There’s no evidence that increasing availability of syringes has any effect on the amount of drugs a person uses, he argues. “The availability or not of syringes doesn’t affect whether people are going to use a drug, but it will affect whether they’re going to acquire or pass on blood-borne viruses,” he says.

The way forward In the 1980s there was a national and state political climate that supported the formal introduction of NSP and other harm reduction initiatives. We no longer enjoy this level of cooperation between major political parties and it is not know when or whether peer distribution will be formally accepted and supported by the NSW government.

• Peter Lavelle is a science, health and medical writer and broadcaster with the ABC. We shall provide further updates in The Hep Review on peer distribution of injecting equipment as it comes to hand.

feature The state of hep C treatment in NSW

F

ollowing its review of hepatitis C care and treatment services in 2007, and the adoption in 2008 of recommendations to expand services and double the number of people accessing treatment by 2012, NSW Health organised a statewide clinical governance stakeholder forum designed to help plan for how that expansion might be achieved.

The first, in December 2008, set the scene for agreeing the basic steps each of the eight Area Health Services would need to go through to best utilise welcome enhancement funding allocated

by NSW Health AIDS/Infectious Diseases Branch (AIDB). NSW Health had increased dedicated hepatitis C funding from $1.6m in 2005/06 to $7m in 2008/09 – an increase of over 300%.

The second forum, held in July 2009, served as a progress check – and there was both good news to report and some key challenges remaining to be overcome.

Prof Greg Dore, infectious diseases physician and hep C treatment expert from St Vincent’s Hospital, Sydney, explained why the numbers of people with hep C accessing treatment needed to increase. Currently the numbers of people on treatment remained low: only 3,500 people across Australia accessed treatment in 2008. With treatment being both cost effective and curative for many, with increasing morbidity and mortality from hep C related liver disease and hep C remaining the main cause for liver transplants in Australia, he felt that doubling treatment numbers was a potentially realistic achievement.

Ms Lisa Ryan, Manager of Harm Reduction and Viral Hepatitis in NSW Health’s AIDB, reported that the expansion had resulted so far in 30 new hep C treatment related staff positions being created: 67% of those in nursing and 18% in allied health. The number of public sites from which hep C treatment is available had increased by 140%. Clinical governance committees had been established in each Area Health Service, providing oversight and helping ensure equitable access to services. And the numbers of people with hep C accessing treatment had increased by 57%.

Continued on page 46.

The Hep Review Edition 70 September 2010 29

Safer Injecting Procedures Tourniquets

Using a Tourniquet

O

ou can yo y , n i e ve v ding a n i f ill the s f m d e l n b a o r m ur ar aving p o h yo y f e e one r o b a t t u u s o o u yo y m f w I which ood flo l b t ithout e e w u h t q i y l n i w r s o u l a s and e ng a to i y l s k u c i y u b q needle. e d h e t s vein a b e r l be re n distu a n c a c t a t h a t h t ment e v o m g n causi

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Pull for Quick Release

These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs.

Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.

30 www.hep.org.au

The Hep Review Edition 70 September 2010 31

The Hep Review harm reduction poster, Sept 2010 (#25). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne.

The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au

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opinion

Portugal: a solution to drugs?

Political will is needed in Canada but the Tories are going the other way, writes Ethan Baron in The Province.

I

t has become clear that arresting, prosecuting and jailing heroin and crack dependants doesn’t make them stop using drugs. The illegal drug trade continues to fuel crime and gang violence, and the social and health effects of illicit drug dependence push the cost to A$8.7 billion per year across Canada, according to a 2007 report by the Health Officers Council of British Columbia (BC).

Until now, debate over the issue has tended toward the extremes: legalise drugs or impose harsher penalties. Both solutions are misguided, and the polarised controversy has obscured the middle ground, where in-fact, the best solutions lie.

Two Vancouver-based organisations – the BC Centre for Excellence in HIV/AIDS and the International Centre for Science and Drug Policy (ICSDP) – have played a key role in drafting a declaration advocating the worldwide decriminalisation of drugs.

and associated pathologies continue to skyrocket in many EU states, those problems -- in virtually every relevant category -- have been either contained or measurably improved within Portugal since 2001.”

In Portugal, it’s still against the law to possess or use illicit drugs. Drug trafficking is still a criminal offence. What’s changed is the response when people are caught for using or possessing a 10day supply of drugs or less.

There are no criminal charges, rather a citation and a summons to a three-member “dissuasion commission” composed of officials with expertise in the law, health and social services.

Commission members hear the circumstances of the person and their drug offence and determine whether the person is drug dependent. Fines can be issued and then can be waived, conditional upon the person entering a treatment program.

The “Vienna Declaration” is the manifesto for 2010’s International AIDS Conference in Vienna.

University of BC associate professor and ICSDP founder Evan Wood chaired the writing committee.

Public money saved by decriminalising drugs has been diverted into drug treatment, the Cato report says.

“There is no evidence that increasing the ferocity of law enforcement meaningfully reduces the prevalence of drug use,” the declaration says.

Treatment programs – both in terms of funding levels and the willingness of the population to seek them – have improved substantially, the report says.

“Billions of tax dollars [are] wasted on a ‘war on drugs’ approach to drug control that does not achieve its stated objectives.”

As well, the number of drug dependants newly infected with HIV has dropped steadily since 2001.

Wood often refers to the results Portugal achieved by decriminalising all drugs -- including heroin and cocaine -- in 2001. And a 2009 Cato Institute report on Portugal’s experience shows that dealing with drug use as a health and social issue, rather than as a crime, produces surprising results.

Before Portugal decriminalised drugs, opponents of the plan predicted vast increases in drug abuse and warned the country would attract hordes of drug tourists.

“None of the nightmare scenarios . . . has occurred,” says the Cato report by Glenn Greenwald. “While drug dependence, usage,

32 www.hep.org.au

Here in BC, there is not enough political will to increase the number of drug-treatment places.

Meanwhile, drug-related harms and costs – financial and human – are out of control.

Decriminalisation would free up millions of dollars for an expanded treatment system and prevention programs. Unfortunately, the legal changes are required at the federal level, where the Stephen Harper government is going in the opposite direction.

• Abridged from http://tinyurl.com/2fwdt2d (29 June 2010).

Continued from page 3.

The audience would be even bigger when including the huge radio stations missed in the national count but reached in NSW: 2GB and 2UE, and ABC Radio Statewide.

Without a doubt the engagement of a media consultant who knows the ropes, has the connections and has the time to pitch and follow up with media is a key strategy in raising public awareness of viral hepatitis. We will most certainly follow this approach in years to come.

In addition to local activities, two key national initiatives certainly attracted the media: Hepatitis Australia’s community knowledge survey provided solid ammunition for media releases; and the treatment costings report by NCHECR was the other hook which led to a much greater media interest in hep C. Following AW10, we worked with Hepatitis Australia to pilot the screening of the national hep B community service announcements/ advertisements in cinemas across Sydney in areas where large numbers of people from Asian backgrounds live. Two 30-second adverts were screened across 165 mainstream cinema screens more than 4,600 times.

Next year, 2011 World Hepatitis Day moves to 28 July. The World Health Organization changed the date to honour the birthday of Baruch Blumberg, the discoverer of the hepatitis B virus (HBV), the HBV screening test and the HBV vaccine.

While this research work was done in the USA, it’s important to note an Australian connection. HBV was discovered in 1965 by Dr Blumberg. Originally, however, the virus was called the Australian Antigen, named in honour of an Aboriginal Australian person, whose blood sample reacted in the laboratory with the antibody in the blood serum of an American person with haemophilia.

While we continue to raise affected community, broad public and political awareness of viral hepatitis throughout the year, it’s our partners’ and our additional, concentrated work around each annual national awareness week that provides the impetus that is so urgently needed to raise the profile of these hidden epidemics of heps B and C, and so reduce their impact and help prevent their transmission.

•

feature

The little book of hep B facts

Image courtesy of Google Images (digitally altered)

a keyhole to our work

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

• In New South Wales, people with hep B are not required by law to disclose their positive status unless they are donating blood, organs or tissues; applying for life or health insurance; a member of, or applying to join the Australian Defence Forces; or a health care worker undertaking exposure prone procedures.

• It is illegal to discriminate against a person because he or she has – or is thought to have – hep B. • All people with hep B should have regular checks with their GP to monitor their health.

• There is a higher risk of liver damage if you have hep B and drink alcohol or have another form of hepatitis.

• If you have hep B and are obese (seriously overweight), it is important to reduce your weight.

This is the final instalment of our excerpts from The Little Book of Hep B Facts. Please see our previous editions of The Hep Review for all 38 hep B facts – or check out the booklet at http://tinyurl.com/2b8jzdp

Hepatitis NSW

The Hep Review Edition 70 September 2010 33

opinion

Clincher argument calls for courage A former judge says a radical new approach is needed to control the drug trade, writes Geesche Jacobsen in the Sydney Morning Herald.

L

ike most lawyers, Ken Crispin knows how to build up an argument. In his new book it takes the former barrister, prosecutor and judge 212 pages to get to the clincher, the argument most likely to attract controversy.

But Crispin, QC, is no stranger to cases attracting their fair share of public comment.

As barrister for Lindy and Michael Chamberlain he battled against a country that had largely made up its mind she was guilty before her trial.

As the judge in the trials over the death of the Canberra man Joe Cinque, he sentenced Cinque’s girlfriend, Ann Singh, to a minimum of four years jail after finding she was mentally ill.

Countries claiming to be “toughest” on drugs have the highest rates of drug use, but countries that portray drug users as people in need of health care fare better.

While persuading politicians and shock jocks to entertain the idea of treating drugs as a public health issue – much like tobacco – rather than a criminal problem may take some time, Crispin hopes they will at least entertain the first step: re-engaging with the principles we used to hold dear.

“If we continue to follow the policies we are pursuing, we are going to make a real mess. We are going to make things worse,” he says. Countries claiming to be “toughest” on drugs have the highest rates of drug use, but countries that portray drug users as people in need of health care fare better.

Despite that evidence, he says, “we don’t have the courage to change”.

Surveys have shown that people overestimate the crime rate and underestimate average sentences.

“I’ve been to too many funerals, held too many parents while they sobbed their heart out, and heard too many questions to which I had no answers to be content with sitting on the sidelines and taking the safe course in terms of public opinion,” he says.

So for more than 200 pages Crispin lays out the argument, backed up by statistics from Australia, the US and Britain, and entertains the reader with anecdotes from cases he has encountered in his 34year legal career.

It is within this framework – the deaths from drug overdoses, the increasing number of users, and the global network of criminals controlling the drug trade – that Crispin calls on people to face the realities.

Then on page 213 he arrives at it: “[We] should seriously consider ... licensing and regulating the sale of drugs, as our societies do with cigarettes and alcohol ... The case for taking the drug trade out of the hands of criminals and cutting off the flow of funds to terrorist organisations such as al-Qaeda is even more compelling.”

He argues that it is time to focus on saving lives and minimising harm. If we rely on politicians to act we may be waiting for a long time. It was doctors and nurses, risking legal sanctions, who ran the first needle exchange programs, he reminds us.

In an interview with the Herald, Crispin says he hopes that some politicians will find the courage to challenge established wisdom, but says he mostly expects vehement disagreement.

There used to be an agreement about the values we share, and the rights and freedoms we enjoy.

But, he says, there has been “a violent lurch to the right”, especially since September 11, 2001, which has resulted in “panic stricken hysteria”.

Switzerland treats heroin dependence as a medical problem, ruining the image of drugs as an attractive, rebellious thing to do amongst young people. Portugal has decriminalised all drug possession, doubling the number of users receiving treatment in two years.

Australia, he says, should consider letting the government take over the drug trade, including licensing dealers. Most convincingly, he says, is the argument linking drugs to terrorism. The Taliban alone earns about A$109 million a year from the drug trade – money terrorists may eventually invest in weapons of mass destruction.

• By Geesche Jacobsen. Abridged from The Sydney Morning Herald (29/5/2010).

34 www.hep.org.au

promotions

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WDP – Workforce Development Program

Sydney Central support group Support groups here at Hepatitis NSW are going strong!

The groups are held at our office: Level 1, 349 Crown St, Surry Hills. Upcoming meetings, running from 6-8pm, will be on 21 Sept, 19 Oct and 16 Nov. They are a great opportunity to get together with others affected by hep C and catch interesting guest speakers.

Image courtesy of Google Images

• For more details, call the Hepatitis Helpline on 1800 803 990.

Stay up to date with what’s happening in the HIV, sexual health and hepatitis sectors. Take a look at the new WDP website www.wdp.org.au ASHM is now managing the Workforce Development Program and recently launched the site. It includes a training directory, information and resources on harm reduction and health promotion, and updates on upcoming events such as the State-wide Needle and Syringe Workers Forum, 20 & 21 September.

ASHM is planning new WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details.

Our aim is to keep you well informed of developments in the sector – and we would appreciate your help to achieve this. Perhaps you have developed a new resource, found a great link, or are you planning a forum or workshop?

We invite you to use this website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at wdp@ashm.org.au or phone Ronnie Turner, Program Manager, 02 8204 0722.

The Hep Review Edition 70 September 2010 35

feature

All you need 2 do is

HIV/HCV peer support: a historical perspective HIV hit this country like a sledge hammer but Australia was a country which recognised and responded to the AIDS pandemic relatively swiftly, with one of the most successful disease prevention and public health education programs in the world. As a result, despite the disease gaining an early hold among at-risk groups, Australia has maintained a low rate of HIV infection.

This is also true of prisons with low HIV infection rates; however, the same cannot be said for hep C. The Australian health policy response to HIV/AIDS has been characterised as emerging from the grass roots rather than top-down, and as involving a high degree of partnership between government and non-government stakeholders. The capacity of these groups to respond early and effectively was instrumental in lowering infection rates before government-funded prevention programs were operational. The response of governments and NGOs was also based on recognition that social action would be central to controlling the disease epidemic.

In 1987, a famous advertising program was launched, including television advertisements that featured the Grim Reaper bowling toward a group of people standing in the place of the pins.

These advertisements garnered a lot of attention: controversial when released, and continuing to be regarded as effective as well as pioneering television advertising.

But it wasn’t the general public who were most at risk. Soon, prisons were recognised as places where individuals with the syndrome could be found. The then reaction in NSW prisons was based on fear

36 www.hep.org.au

and segregation – much like what happened to Eve van Grafthorst, the Central Coast toddler who was banned from attending her kindergarten because she was HIV positive.

Prisons of course are a community in themselves separated very much from the community at large, but not immune to the reactions of the politicians and executive and corporate stakeholders within the department. The HIV response in prisons was implemented under an umbrella of duty of care. The legal basis of this duty is twofold.

Firstly, prisoners retain some common-law rights.

It is a well established principle of tort law that correctional authorities owe a duty of care to persons under their care or control, and that breach of this duty gives rise to liability in negligence.

The duty extends to the taking of reasonable precautions to prevent one prisoner harming another. The HIV response involved giving inmates with HIV their own cell or offering them a shared cell with another prisoner with HIV. I personally knew many of the inmates who would be transferred into the HIV Health Promotion Unit at Long Bay. At no time did I ever feel any threat from these guys, or did I ever see them undertake any so called risk behaviours. Even though I was young and had not yet began my peer support journey I did not understand the policy of the authorities at that time: to lock away people with HIV – a disease that could only be transmitted through direct blood-to-blood or sexual contact.

Things have changed very much since those early days, with informed-consent testing, condoms being made available, methadone programs, education and treatments including combination therapies.

Don’t cuff yourself

The HIV Health promotion unit commenced as the Prison AIDS Project then it became the HIV Health Promotion Unit. In 1999, it was merged with the AOD Unit. In 2004 the combined AOD/HHP unit ceased to exist. At that time, the inmate education functions were incorporated into the offender programs unit.

Staff training functions were handed over to the Corrective Services Academy in 1999. Other responsibilities including OH&S, provision of disinfectant etc, became part of the mainstream operations of the department.

The Peer Support Program was a major initiative in the 1980s. It was evaluated and found to be very effective.

It was mainly delivered in maximum security centres to trusted long term inmates who were likely to be in the system for a long time and could act as peer supporters for other inmates. Over time, the peer supporters moved on to medium and minimum security prisons and so their influence was felt throughout the system. The program is still being delivered at Lithgow through Alcohol and Other Drugs. Sixteen new Peer Support Workers were trained when I myself was at Lithgow.

The Health Survival Program has been revised and updated and is now the main harm reduction education program for inmates. The department is currently developing a DVD version of this program in which much of the information will be delivered by an actor playing the part of a Peer Support Worker.

The problems of implementing HIV/AIDS education in prisons should not be trivialised. There are deep-seated anxieties about HIV/AIDS amongst prison officers and inmates, and firmly entrenched misconceptions are not easily overcome. Hostility exists between prison staff and prison inmates, and between prisoners and other prisoners suspected of having HIV infection.

Effective education is difficult, given the high turnover of prisoners in Australian jails. In addition, developments, implementation, evaluations, and staffing of educational programs are costly.

Moreover, prison staff and prison inmates can

become complacent, so education programs need to be creative and innovative if their message is to be effective.

A simpler task is to identify the requirements of effective prison harm reduction and transmission prevention education: • proactive rather than a reactive approach • commitment to HIV/AIDS /HCV education from responsible government ministers, senior policy makers, prison administrators and the union • provision of compulsory HIV/hep C education on reception into prison, and for new prison officers with regular follow-up and pre-release sessions • provision of mandatory HIV/hep C education for new prison officers • active involvement of prisoners and staff in learning, producing, and evaluating educational measures to ensure that HIV/hep C education is relevant to their needs and concerns • the use of discussion sessions and video presentations, as well as written material, for maximum educational effect • utilising inmates who are well-trained and committed HIV/hep C educators • cooperation between jurisdictions and sharing of ideas and resources: and ongoing evaluation of the programs which are in place.

We do of course have a way to go, in particular with peer support programs. Funding is needed in this area to train peer support inmates and employ them on the ground in delivering resources, information, advice and practical assistance to anyone who may need it.

Ideas on peer support are welcome at All U need 2 do is ask, so come on guys and girls, write in.

• Robert Barco All U need 2 do is ask The Hep Review PO BOX 432, Darlinghurst NSW 1300.

The Hep Review Edition 70 September 2010 37

Image, left, courtesy of http://thisisthelaw.files.wordpress.com Image, far left, provided for All you need 2 do is ask, by Long Bay MSPC inmate.

ask

feature

opinion Gene patenting: producing profits or cures?

Kevin Noonan, from Patent Docs, takes a critical look at media discussions around gene patenting – an issue of direct relevance to researchers working with hep C.

N

ews outlets of all stripes have many things in common. Unfortunately one of these is an uninformed antipathy to biotechnology, particularly with regard to gene patenting.

This similarity is evidenced most recently in The Huffington Post, in a piece entitled “Gene Patenting Produces Profits, Not Cures.” The author, Harriet Washington (who also authored Deadly Monopolies; more on that later) writes that Myriad Genetics “predictably” appealed Judge Robert Sweet’s decision invalidating fifteen claims in seven patents challenged by several breast cancer patients, medical associations, and researchers (and supported by the ACLU and the Public Patent Foundation).

The piece is replete with misstatements concerning the scope of rights conferred by gene patents, such as that Biogen controls “your kidney’s essential KIM gene” as well as a list of other genes patented by the University of California and other patent holders. Ms Washington boldly asserts that the “coalition” challenging gene patents in the Myriad case may have too narrow an agenda, and proposes (conveniently, since her argument provides a précis of her forthcoming book) that all “life patents” should be banned. These include “the more than 500,000 genes that control the most basic processes of human life”, a stunning statement in view of the reality that there are only about 30,000-40,000 genes in the human genome.

Setting her sights even higher than genes, she believes that patents on bacteria, viruses, biologicals such as artificial blood, cell lines, tissues, pharmaceuticals, and even on medically important plants and animals such as Harvard’s patented cancer-prone “oncomouse” should be banned. Why? Because “the A$65.7 billion pharmaceutical industry became the most profitable industry on the planet by exploiting its plethora of patents.”

She sets forth an overall correct history of the development of the biotechnology industry.

She mentions the Diamond v. Chakrabarty decision, and passage of the Bayh-Dole Act that encouraged universities to protect their inventions

38 www.hep.org.au

(instead of letting them fall into the public domain where they could be exploited by corporations, including foreign corporations, with no compensation to the university or its researchers).

She also discusses the rise in university patenting, from about 260 patents a year prior to Bayh-Dole to more than 3,000 patents a year today. She also notes that “by 1991 [universities] had gleaned A$239 million in royalties” (an amount certainly much higher today).

Where she begins to show her naïveté about how technology is transferred between academia and pharmaceutical companies is when she says that “corporations receive valuable, readymade patents on medications, biologicals, genes, devices, plants and animal hybrids”, which suggests that the technology transferred is ready to be commercially exploited solely as the result of federal grant support and “university brainpower”.

While necessary, these factors are woefully insufficient, at least because the FDA requires extensive safety and efficacy studies before any pharmaceutical comes on the market (protection it is unlikely Ms Washington opposes).

Her argument seems to be that with all the patents and all the research, the public has received less than they were promised. She cites in support of this proposition that by 2003, “North American university researchers had started 374 companies and academic institutions had completed 4,516 licensing arrangements earning them more than A$1.4 billion” and that by 2006, “university technology transfer offices had generated at least A$49 billion, largely from licensing fees.” The result, she maintains, is that universities have become research “satellites” rather than independent entities.

This charge is, ironically, belied by the statistics on licensing, which illustrate how universities, due to their patent rights, are in the position to grant licenses to those companies committed to commercialising their inventions. Indeed, most such licenses have commercialisation milestones and other provisions that, for example, change an exclusive license to a non-exclusive one (that can be licensed to another company) should the performance milestones not be met.

She repeats some oft-told tales, such as the purported pernicious effects of Chiron’s hep C virus test, and the company’s failure to produce better treatment despite patents on isolated viral genes. She uses Chiron’s lawsuit against a commercial infringer to allege that there was a “chilling effect on researchers who wish to work on better hep C treatments,” but provides no evidence that Chiron has sued any basic (noncommercial) researcher working on hep C biology.

This is similar to allegations in the Myriad suit that the company was inhibiting basic research, despite the >8,000 basic research papers easily found in PubMed and other databases.

Ms Washington raises some real limitations to the Western medical research model, including that diseases prevalent in the undeveloped world (such as trypanosmiasis) have not been adequately addressed, and the inefficiencies in business models that require “blockbuster” drug status to support the incredible costs (A$877 million - $1.3 billion) of bringing a drug to market. And she mentions John Moore’s hairy cell leukaemia, Henrietta Lack’s vulval adenocarcinoma (HeLa) cells, and Canavan’s disease patient samples as examples of corporate exploitation. On the contrary, all of these incidents occurred in a university setting, and the HeLa example occurred in the same time period that saw Jonas Salk perform experiments on his polio vaccine with retarded children from a nearby sanitorium, with precious little informed (or parental) consent.

What Ms Washington refuses to acknowledge (because it doesn’t support her argument) is the real benefits (or “cures”) that biotechnology has provided over the past 30 years. Nowhere in her piece is there anything about the

thousands (millions?) of heart attack patients whose lives have been saved by recombinant tPA (Genentech), or the thousands (millions?) of kidney disease patients leading relatively normal lives due to recombinant EPO (Amgen), or the thousands (millions?) of breast cancer patients treated with Herceptin® (Genentech), or colon cancer patients treated with Avastin® (Genentech) or macular degeneration patients whose eyesight has improved using Lucentis® (Genentech), not to mention the hundreds of other biotechnological drugs on the market or in development. No, these triumphs don’t exist in the world Ms Washington describes, which must make it easier for her to say: Some argue that gene patents are necessary to generate the profits essential to funding the medical cures. But as the cases of breast cancer, hepatitis C and haemochromatosis illustrate, genes are more commonly used for faster, easier routes to profit, such as marketing tests, selling licenses and suing those patent-infringers who step on the corporation’s biomedical toes.

The biotechnology industry is not without its inefficiencies, but failing to acknowledge the benefits along with the deficiencies makes it easier to set forth the portrayal contained in Ms Washington’s article. But doing so fails to describe “the rest of the story”, and does a disservice to anyone wanting to understand the role of both universities and patenting in the biotechnology industry.

• Kevin Noonan is a founding author of the Patent Docs weblog, a site focusing on biotechnology and pharmaceutical patent law. Abridged from http://tinyurl.com/295tukj (14 July 2010).

The Hep Review Edition 70 September 2010 39

Image by CIAT - International Center for Tropical Agricultu, via www.flickr.com

opinion

Enjoy our article, Hep C and men, in Edition 68? Here, Peter Lavelle of The Pulse highlights six risk factors for men to avoid if they want to live to 85.

M

en have a two in three chance of getting to age 85, and being in good health, if they look after themselves, say US researchers.

You’ve heard of Methuselah. No he isn’t a rap artist, he was a biblical figure and his chief claim to fame was that he lived a long time – 969 years to be exact, if you believe Genesis, the first book of The Bible.

How did he get to live so long? It turns out that Methuselah didn’t smoke. He exercised regularly and didn’t drink too much. He was married, he had a tertiary education (biblical studies?) and he kept his blood pressure and blood glucose within normal limits.

How do we know this? We don’t for sure. But what we do know is what keeps old men alive well into their 80s, thanks to US researchers from the University of Hawaii and Pacific Health Research Institute, Honolulu.

They looked at around 6,000 healthy American men of Japanese descent living in Hawaii who were aged around their mid 50s and followed them for forty years – from 1965 to 2005.

Of these men, 42% survived to age 85 years and 11% were not only alive at this age, but free of chronic illness and still mentally alert. How did they do it? The researchers looked at how these men had spent the preceding forty years – their lifestyles, whether they had any risk for major illnesses, and how fit and alert they were.

It turns out it was by and large not what they did, but what they didn’t do that kept them well for so long. They avoided six risk factors: being overweight, having high blood sugar, high blood pressure, smoking, excessive alcohol consumption, and high blood fats.

40 www.hep.org.au

A man who had none of these risk factors had a 69% chance of reaching 85 and a 55% chance of being free of illness at that age. But a man who had all six risk factors had only a 22% chance of living to 85, and only a 9% chance of being healthy at that age.

The researchers found other factors that played a part in boosting longevity. One was education; the more of it they had, the longer they lived and the healthier they were. Not finishing high school, for example, cut the chances of being physically and mentally healthy at age 85 by 62%.

Another was marriage; unmarried men, they found, were 70% more likely to die before age 85 than those who were married.

And those men who were naturally physically strong (as measured by the firmness of his grip) and those with a naturally slim build in their youth, tended to live longer.

So the message is that if a man wants to maximise his chances of living into his 80s, by the time he reaches midlife he should be educated, married, non-smoking, thin, and be a moderate drinker with normal blood sugar and blood pressure. A bone-crushing handshake doesn’t hurt either.

Will he live as long as Methuselah? Actually, there’s a 69% chance, if we go by these figures.

That’s because some researchers now believe Methuselah’s age was inflated – that the figure of 969 years was a mistranslation from the ancient Sumerian texts and that his real age at death was actually 85.

• Abridged from ABC TV’s The Pulse http:// tinyurl.com/2do6obq (23 Nov 2006).

Image by * hiro008, via www.flickr.com

On reaching four score plus five

membership matters You are vital to us — we are here for You 4TH AUDREY LAMB COMMUNITY FORUM AND ANNUAL GENERAL MEETING THURSDAY, AFTERNOON, 11 NOVEMBER 2010 We strongly encourage all members of the hepatitis C affected communities to become financial members of Hepatitis NSW. The benefits are many: not least, members have a say in how our organisation is governed.

Financial members of Hepatitis NSW will receive a copy of Member News by post. This gives details of the webcast.

We have listened to what our members said in our 2009 community events survey and we have made our community forum and AGM more accessible: timewise, location and technology-wise.

Are you a healthcare worker living in NSW and an existing current financial member of Hepatitis NSW? You may apply to us for a Hepatitis NSW scholarship to attend an online training course: Hepatitis for Health Care Workers conducted by the Albion Street Centre.

Just write or email to Gabrielle Lipscomb (Hepatitis NSW, PO Box 432, Darlinghurst NSW 1300 or glipscomb@hep.org.au) by 27 September stating why you wish to attend this course and how you can best apply the knowledge gained.

If you would like further details about the course, please let us know.

This year the forum and AGM will be held at the conference facilities at ASHM, Level 7, 46-56 Kippax Street, Surry Hills in Sydney. This venue is three minutes walk from Central station and for the first time, rural or city members can join us from their own computers by logging in to the webcast of proceedings.

If you aren’t a current member, now is your chance to join, or re-join if you have let your membership lapse, so that you too can take advantage of membership benefits and special offers. If you are a Professional or Organisational member and have mislaid your invoice, please phone us on 9332 1853 to obtain a copy.

We are delighted to have Professor Geoff Farrell – our founding Patron and Professor of Hepatic Medicine, of the Gastroenterology & Hepatology Unit, The Canberra Hospital and the Australian National University Medical School – to speak and take questions on the latest current and future developments in hepatitis C treatments.

How to join or renew? It’s easy – by mail, fax or secure online facility via our website: www.hep.org.au

Please consider joining before 12 October (so the board can approve new applications). Then please join us at our annual general meeting and our 4th Audrey Lamb Community Forum to be held at 4pm Thursday 11 November 2010. The notice of these events is enclosed with this magazine.

The earlier start time of 4pm will enable more people to attend.

Visa, MasterCard, cheques and Australian Money Orders are all welcome. Remember, people in financial hardship can still be financial members by choosing the zero fee option.

IN YOUR SEPTEMBER EDITION OF MEMBER NEWS, READ ABOUT: Benefits of financial membership for individual community members include: having a say in how HNSW is run through voting at our AGM; the opportunity to apply for scholarships for conference attendance; access to an expanded library service; a regular copy of Member News and other updates as well as a home-delivered copy of each edition of The Hep Review, Australia’s most widely read regular hepatitis magazine.

Benefits of financial membership for organisations and healthcare workers additionally include: access to free training; free C-een & Heard positive speaker involvement in your agency’s education sessions; and free HNSW meeting-room space for your agency.

The Hep Review Edition 70 September 2010 41

feature

HELLO HEPATITIS HELPLINE Hi. I’m arranging a holiday with my family.

I’ve invited my brother along and he’s had hep C for about 15 years. It sounds horrible, but I have young kids and I’m worried about him being around them. Are my children at any risk of getting hep C while we’re on holidays? What if my brother cuts himself or something?

Lots of people have the sorts of fears you’ve described, but it’s important to remember that most everyday situations are not a risk for hep C. Hep C is only spread through blood-to-blood contact. That means that the blood of a person who has the virus has to get into the bloodstream of a person who doesn’t have it. You can’t get hep C through everyday contact. It is safe to share food, utensils and toilets, and hugging and kissing is not a risk either. You can’t get hep C from the air, a mosquito bite, sneezing or coughing.

It may be possible to get hep C through blood-toblood contact in the home, but it’s unlikely. If you follow a few simple precautions you can minimise the risk of blood-to-blood contact and reduce the risk of hep C transmission almost down to nil. The key thing is to avoid blood, and to use the same precautions for everyone, regardless of what you do or don’t know about them.

If there’s blood present, remember that just being in the presence of blood is not enough to give you the virus: it would have to enter your bloodstream to be a risk. To be sure, it’s best to avoid contact with blood. If there is blood present, here are the steps to take:

• Wash blood-stained clothes in cold water and detergent • If there’s blood on carpet or soft furniture, use detergent in cold water to clean it up • Bag anything disposable with blood on it and put it in a plastic-lined bin • Use soap and cold running water to wash your hands or any other part of the body that might have blood on it As general precautions, it’s also good to: • Make sure that if anyone has any cuts or sores, they’re covered with waterproof dressings • Not share personal care items like toothbrushes, razor blades or body piercing jewellery, because they might come into contact with blood • Be aware of blood Remember that household transmission of hep C is rare. If there is an incident involving blood, following these few simple precautions for everyone (not just your brother) will minimise any risk to you and your family. If you follow them, you needn’t worry. Have a great holiday!

Some material in this column was adapted from the National Hepatitis C Resource Manual.

Remember, we are always happy to answer as many questions as we can here at the Hepatitis Helpline.

•

Hepatitis Helpline

• Make sure that cuts, sores and irritated skin are covered with waterproof dressings • Wash your hands with soap and water • Put on a pair of disposable latex gloves • Wipe blood-stained surfaces with detergent and paper towel, then disinfect them with diluted bleach ‘Hello Hepatitis Helpline’ is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity.

42 www.hep.org.au

FERRAL. INFO. SUPPORT. RE L TIA EN ID CONF

hepatitnise helpli

Growing older with hep C Writing in The Good Liver, David Iser examines the issue of growing old with hep C.

T

he good news about growing older with hep C is that the vast majority of people won’t develop severe liver injury (cirrhosis). The other good news is that there is no upper age restriction for current treatment, so doctors are initiating treatment in people well into their sixties and sometimes beyond. As we age, however, we may require medications for other health issues. In this article we aim to discuss some issues facing people growing older with hep C. Australia’s population is ageing, with 13% currently over the age of 65 and an expected 24% over the age of 65 by the year 2056. Currently an estimated 210,000 are living with hep C. Although fewer people are acquiring hep C than ten years ago, the number of people with hep C-related liver injury is increasing. An estimated 20% of people with hep C will develop cirrhosis in 40 years, but this proportion may increase as our population ages.

Hep C treatment may be more likely to be successful in younger people, however successful treatment and cure can still be achieved in older people. New agents such as specifically targeted anti-viral therapy for hep C (STAT-C) are currently only available in clinical trials, which usually exclude people over 65 years. However, they are likely to benefit people with hep C of all ages in the near future.

As we age, we may take medications for a variety of medical problems. Adverse reactions, including elevated liver function tests (LFTs) may occur, which may be confused with a ‘flare’ of hep C. Whether elevated LFTs are more likely in people with hep C is unclear.

Almost any medication, including many herbal preparations may cause elevated LFTs. Some of the more common ones include cholesterollowering drugs (‘statins’), certain antibiotics, anti-

inflammatory drugs (NSAIDS) and anti-convulsants for seizure disorders. Other common medications such as hormone replacement therapy (HRT) may be associated with increased risk of gallstones, but do not commonly interact with hep C. Unfortunately the incidence of most illnesses increases with age, so the longer we live, the more likely we are to need to consider treatment for conditions like diabetes, cancer, hypertension, high cholesterol. Both medication use and adverse reactions increase with age. Therefore, new medications should be discussed with a local doctor in this context. After a new medication (including herbal therapy or non-prescription medication), is commenced then monitoring of LFTs every few months may be appropriate. A sudden rise in LFTs may be more likely due to a new medication than hep C itself.

In some situations, a significant rise in LFTs may lead to the medication being ceased. In other circumstances a small rise, with no associated symptoms may be tolerated. Each situation is different, and the decision to stop or continue a new medication depends on a variety of factors including the risk of pre-existing liver injury, the degree of LFT rise, the original need for the particular medication, and whether suitable alternatives are available.

These decisions should be made with a local doctor, and occasionally with advice from a liver specialist.

It is important to remember that most people with hep C do not develop cirrhosis. The factors most likely to impact on our health in ageing are alcohol, smoking, obesity and inactivity, not our hep C. • Abridged from the original, published in Good Liver (Winter 2010), the magazine of Hepatitis C Victoria.

The Hep Review Edition 70 September 2010 43

Image by kiyoshi.be, via www.flickr.com

feature

hep C bookmarks O

ur hep C bookmarks have proved handy in promoting greater awareness about hep C in the general community.

Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

Can you help raise awareness by distributing the bookmarks?

Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • Letterbox drops in local streets.

We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990).

• Hepatitis NSW

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

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

To find out about safer tattooing and piercing, visit

www.hepatitisc.or

g.au

or call the

Hep C Helpline (see over)

44 www.hep.org.au

Don’t discr

iminate

Hepatitis C is hard to catch.

Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds.

People with hep C come from all backgroun ds. accurately ass You can’t ume anythin about them. g

It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid forks. and bloodknives tosame blood contac t wit h oth er people, you are not at risk .

It is transmitted when So if infected blood from one hep you find out someone C, sup the port them and has person gets into don dis ’t crim inate agains bloodstream of someone t them. else.

For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)

Visit the all new www.hep.org.au and start clicking

promotions

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To organise

ak to a volu a time to spe

dney) y S ( 9 9 5 1 2 ional) 3 g e 93 r W S N ll a 0 (Freec 1800 803 99 The Hep Review Edition 70 September 2010 45

feature research updates Depression often A historical perspective – 1994 overlooked in hep C Headlines from 15 years ago...

• $55,000 payout for hep C • NSW Health Minister supports hep C initiatives • Interferon treatment: what can we expect?

• HCV patents: putting hep C research in the witness box • State budget strategy: spend • Infection control • How specific should I be about my health workers procedures?

• CEIDA Forum, Sydney, June 1994 • Interferon - a healthcare worker’s experience • Nurse consultant hepatitis C • Living with grief • News from our country groups • NSW Governmental Hepatitis C Taskforce • Coexisting with hep C • Central Coast greetings • New improved testing kit hits the streets • On hearing I’m hep C positive • St Vincent’s Hospital & Roche Diagnostics PCR testing offer • Hep C and methadone • When it’s time to shop around for a GP • Upcoming information nights • Media representation of hep C issues This edition marks the point where we changed our magazine name: from Australian Hepatitis C Support Group (newsletter) to The Hep C Review.

If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy.

• Taken from The Hep C Review, Edition 9, Sept 1994 (yes, a Homer Simpson moment – we put out two edition 9s: one in June 1994, one in September 1994).

46 www.hep.org.au

Europe – Researchers from Denmark, Sweden, Norway and Finland have observed that depressive symptoms in patients with hep C are commonly overlooked, and that treatmentinduced depression compromises the outcome of hepatitis C virus therapy.

Peter Leutscher and colleagues estimated the value of routine medical interviews in diagnosing depression in hep C patients receiving combination therapy using the Major Depression Inventory (MDI). The MDI is a self-rating depression scale used to diagnose and measure severity of depression. Of the 325 patients enrolled in the study, 6% were observed with major depression at baseline.

Among the remaining 306 patients, 37% (n=114) developed depression while on combination therapy. “According to the MDI criteria, we found that only 32% of the 114 patients with major depression were correctly diagnosed during routine medical interviews,” noted Dr Leutscher.

Researchers also noted that the emergence of major depression frequently led to premature discontinuation of the therapy. Those patients with higher MDI scores (30 and over) were more likely to have a diminished treatment outcome.

“A self-report instrument such as the MDI scale may be a useful tool for health providers to identify patients at risk for depression during therapy,” said Dr Leutscher.

Leutscher PDC, et. al. Evaluation of depression as a risk factor for treatment failure in chronic hepatitis C. Hepatology 2010. 52(2):430-435.

• Abridged from http://tinyurl.com/2errbl4 (July 2010).

research updates Resistance to new treatments

Disclosing hep C status in everyday situations

USA – Telaprevir has substantial antiviral activity in people with chronic hep C. However, in clinical trials, drug-resistant variants emerge at frequencies of 5-20% of the total virus population as early as the second day after the beginning of treatment.

Australia – In this paper, Dr Max Hopwood and colleagues quantify hep C disclosure outcomes across social contexts and identify the factors associated with widespread disclosure of a person’s infection status.

Using probabilistic and viral dynamic models, we show that such rapid emergence of drug resistance is expected. We calculate that all possible single- and double-mutant viruses already exist before treatment and that one additional mutation is expected to arise during therapy.

Examining data from a clinical trial of telaprevir therapy in detail, we show that our model fits the observed dynamics of both drug-sensitive and drugresistant viruses and argue that therapy with only direct antivirals will require drug combinations that have a genetic barrier of four or more mutations.

L. Rong, et. al. Rapid emergence of protease inhibitor resistance in hepatitis C virus. Sci. Transl.

Med. 2, 30ra32 (2010).

• Abridged from http://tinyurl.com/2g7jalv (5 May 2010).

In a cross-sectional survey of 504 people with hep C, more than half reported receiving a bad reaction from someone following disclosure.

Unauthorised disclosure occurred, and many participants had been pressured into disclosing their infection.

The factors associated with widespread disclosure were: education level; knowing other people with hep C; feeling fatigued; receiving disclosure advice; and experiencing unauthorised disclosure.

Bad reactions following disclosure are common and may impede health-seeking behavior including uptake of hep C treatment.

• Hopwood M, et. al. Disclosing Hepatitis C infection within everyday contexts: Implications for accessing support and healthcare. J Health Psychol. 2010 Jul 23.

[Epub ahead of print]

Research Updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need.

Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. This helps develop consensus opinion on particular research topics and broadens our overall knowledge.

The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). NB: in some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.

The state of hep C treatment in NSW (Continued from page 29) Significant barriers remain however, but Greg Dore noted that the widening use of Fibroscan, the non invasive alternative to liver biopsy – both markers of liver damage – would help smooth the path and provide more efficient ways of monitoring people’s liver disease and would therefore help assess treatment need. He pointed to the need for a national hepatitis C public awareness campaign, education and training for GPs and other health workers and called for a community based survey of treatment needs.

• Hepatitis NSW

The Hep Review Edition 70 September 2010 47

research updates Turmeric fights liver damage Austria – Turmeric, a spice used in India to flavour traditional dishes, delays liver damage that eventually causes cirrhosis, say Austrian scientists.

A study published in Gut, an international journal for hepatology and gastroenterology, found that the compound curcumin found in turmeric, is a powerful anti-inflammatory that reduces the inflammation that causes damage and scarring of liver cells.

The scientists wanted to find if curcumin, the active ingredient in turmeric that gives the spice its bright yellow colour, could delay damage caused by progressive inflammatory liver disease.

Two conditions – primary sclerosing cholangitis and primary biliary cirrhosis – can be triggered by genetic defects or autoimmune disease, and cause the liver’s bile ducts to become inflamed, scarred, and blocked. The conditions can eventually be fatal.

The Austrian researchers studied tissue and blood samples from mice with chronic liver inflammation before and after adding curcumin to their diets for four or eight weeks. They discovered that the compound significantly reduced liver cell damage and the blockage of bile ducts.

The amazing health benefits of curcumin from turmeric have been shown in many recent studies. One study at the University of California, Los Angeles, found curcumin may treat Alzheimer’s by slowing the build-up of amyloid plaques in the brain.

Laboratory studies at the University of Texas found that turmeric appeared to prevent the development and spread of many types of cancer, including breast, colon, and melanoma. Other studies have found a link between a reduced risk of leukaemia and colon cancer in populations whose diets include large amounts of turmeric.

• Abridged from http://tinyurl.com/2cmud6l (15 June 2010).

48 www.hep.org.au

Silibinin prevents reinfection after hep C related liver transplant Germany – Therapeutic measurements to control hep C reinfection after liver transplantation still pose many problems and remain unsatisfactory.

However, as recently described by Ferenci et al., high dose intravenous silibinin (Legalon SIL) can express potent antiviral activity.

In this letter, we can report the first successful prevention of hep C reinfection after liver transplantation by the administration of silibinin (1400mg/d). This drug was applied immediately after liver transplantation by daily infusions for 14 days.

This is the first report of the successful suppression of early hep C reinfection after liver transplantation with a 14 day course of silibinin mono-therapy. This new treatment regimen thus induced an SVR, as after six months of follow-up, RNA for HCV was undetectable.

Accordingly, liver histology six months after liver transplantation did not show any cellular inflammation. Low pre-transplant HCV RNA levels may be taken as a favourable prognostic factor for the unexpected therapeutic efficiency of silibinin. Applying silibinin during the anhepatic phase or even in the days before transplant may expand the number of patients benefiting from this approach. This report may stimulate further trials and the concept of interferon-free hep C clearance induced by direct antivirals.

Successful prevention of hepatitis C virus (HCV) liver graft reinfection by silibinin mono-therapy.

UP Neumann, et al. J Hepatol 2010. 52(6):951952 • Abridged from http://tinyurl.com/24ochkr (30 May 2010).

research updates Golgi could be first reliable marker for liver cancer risk USA – Liver cancer is the fifth most common cancer in the world and one of the deadliest cancers since it is rarely diagnosed until late in its development. The lack of reliable screening tests for liver cancer contributes to its high mortality rate since tumours seldom cause symptoms until the later stages when treatment options become limited and the prognosis is poorer.

But that might be about to change, according to Dr Claus Fimmel, a hepatologist who is involved in an international study of a protein that is shaping up as a promising basis for the development of an effective liver cancer screening test for high-risk patients.

“The protein pretty reliably shows up in the blood of patients with liver cancer in several studies from Europe, China and the United States,” said Fimmel, who is division director of gastroenterology, hepatology and nutrition at Loyola University Medical Center in Maywood, Illinois.

The current blood test used to screen for early tumours in people at high risk for liver cancer involves a protein called alpha-fetoprotein (AFP), Fimmel said. Patients who are at risk for liver cancer typically have chronic liver disease such as cirrhosis due to infection with the hepatitis B or C virus or alcoholism.

“Unfortunately, the AFP test is not good enough to detect liver cancer in time, and it often generates a false positive in patients who end up not having the cancer,” Fimmel said.

The protein being studied is known as Golgi Protein-73 (GP73), which was first discovered in Dr Fimmel’s lab in 1998. Subsequent studies have shown that the blood levels of GP73 are consistently higher in patients with liver cancer than in healthy individuals. In addition, levels were not significantly higher in patients with diseases other than liver disease.

Low reinfection rates after combo treatment among people who inject drugs Australia – Despite 60-90% of people who inject drugs having hep C, they are often denied therapy because of concerns of reinfection following treatment. However, there are little data in this regard. We evaluated hep C reinfection following sustained virologic response (SVR) among people who inject who had completed hep C treatment.

Following treatment, patients were encouraged to return at follow-up intervals of one year and illicit drug use histories were obtained. In those with SVR, HCV RNA testing by PCR was performed to determine if relapse or reinfection occurred.

Among 58 patients receiving hep C treatment, 60% (35 of 58) achieved an SVR. Patients were followed for around two years following SVR, with ongoing injection drug use reported in 46% (16 of 35). Of the 35 with SVR, 28 remained HCV RNA negative during followup (80%), with four lost to follow-up and one dying of hepatocellular carcinoma. Two cases of reinfection were observed (2 of 35).

The rates of reinfection were 3.2 per 100 person-years overall and 5.3 per 100 personyears among those reporting injecting following SVR. One of two participants with HCV reinfection spontaneously cleared the virus following reinfection.

The authors concluded that the rate of reinfection following treatment for HCV infection is low among people currently and formerly injecting drugs.

• Reinfection with hepatitis C virus following sustained virological response in injection drug users. Jason Grebely, et. al. Journal of Gastroenterology and Hepatology 2010.

25(7):1281-1284

• Abridged from http://tinyurl.com/23jltq6 (9 April 2010).

The Hep Review Edition 70 September 2010 49

research updates Diabetes is leading cause of US liver cancer

High fructose corn syrup linked to liver damage

USA – Which risk factor for hepatocellular carcinoma (HCC) is associated with the largest proportion of cases of the disease in the United States?

USA – High fructose corn syrup, which some studies have linked to obesity, may also be harmful to the liver, according to Duke University Medical Center research.

If you answered hep B, hep C or alcohol-related disease, you would be wrong. Although these risk factors put a person at relatively higher risk of developing liver cancer, more cases of liver cancer are attributable to diabetes, said Dr Katherine McGlynn, from the US National Cancer Institute.

“We found that increased consumption of high fructose corn syrup was associated with scarring in the liver, or fibrosis, among patients with nonalcoholic fatty liver disease (NAFLD),” said Dr Manal Abdelmalek at Duke University Medical Center.

A new study from Dr McGlynn and colleagues from the NCI and Baylor College of Medicine in Houston, Texas, sheds light on the risk factors for liver cancer and their incidence.

They found that diabetes was associated with the greatest percentage of cases (33.5%), followed by alcohol-related disorders (23.9%), hep C infection (20.7%), hep B infection (5.7%), rare metabolic disorders (3.1%) and obesity (2.7%).

The findings conflict with conventional wisdom about HCC and its associated risks, said Dr McGlynn.

“Much of the hepatocellular carcinoma literature now states that HCV is ‘the major risk factor for hepatocellular carcinoma in the United States’,” she told Medscape Oncology.

Overall, approximately 63% of liver cancer was associated with one or more of these risk factors, indicating that 37% of cases are not explainable by the known risk factors.

Still, the new findings point to an important direction in the prevention of liver cancer.

“Overall, controlling diabetes might have a greater impact than any other single factor on reducing the incidence of hepatocellular carcinoma in the United States,” the study authors conclude in their abstract.

• Abridged from http://tinyurl.com/22kmn5x (28 April 2010).

Her team of researchers at Duke looked at 427 adults enrolled in a NAFLD research network.

They analysed dietary questionnaires collected within three months of liver biopsies to determine their high fructose corn syrup intake and its association with liver scarring.

The researchers found only 19% of adults with NAFLD reported no intake of fructose-containing beverages, while 52% consumed between one and six servings a week and 29% consumed fructose-containing beverages on a daily basis.

Abdelmalek published research in the Journal of Hepatology in 2008 that showed, within a small subset of patients, high fructose corn syrup was associated with NAFLD. Her latest research, published online in Hepatology, goes one step further and links high fructose corn syrup to the progression of liver injury.

“High fructose corn syrup, which is predominately in soft-drinks and processed foods, may not be as benign as we previously thought.”

“There is an increasing amount of data that suggests high fructose corn syrup is fuelling the fire of the obesity epidemic, but until now no one has ever suggested that it contributes to liver disease and/or liver injury.” Abdelmalek said the next step is more studies looking at the mechanisms of liver injury.

“We need to do formal studies that evaluate the influence of limiting or completely discontinuing high fructose corn syrup from one’s diet and see if there are health benefits from doing so,” she said.

• Abridged from http://tinyurl.com/yhrrxtm (23 Mar 2010).

50 www.hep.org.au

research updates Telaprevir’s success among non-responders confirmed

Latest telaprevir trial shows 75% cure rate for genotype 1

Germany – Telaprevir produced encouraging results across a range of patients with hep C for whom standard treatment had not produced ideal results, say German researchers.

USA – Currently in Phase III clinical trials, Vertex’s telaprevir is in the last stage before obtaining FDA approval. The likelihood of telaprevir becoming widely available soon has just grown since Vertex’s recent announcement that telaprevir plus the current standard of treatment substantially increases hep C treatment success rate.

Patients who did not respond or relapsed to standard peg interferon and ribavirin, all achieved encouraging sustained viral response (SVR) rates, according to results presented at the European Association for the Study of the Liver (EASL) 45th Annual Meeting.

Dr Tomas Berg, professor of medicine at the University Medical Center Leipzig in Germany, and colleagues evaluated telaprevir in 115 patients who had been enrolled in the control groups in three previous studies who had not achieved a SVR on standard treatment.

Patients received telaprevir 750 mg every eight hours plus a standard dose of peg interferon and ribavirin for 12 weeks. Those who achieved a partial response, who had viral breakthroughs, who relapsed, and who achieved no response at all received another 24 weeks of peg interferon/ ribavirin treatment.

Non-responders had a SVR rate of 37% (19 of 51 patients). Partial responders had a SVR of 55% (16 of 29 patients). Those who had a viral breakthrough had a SVR of 75%.

Patients who had relapsed – those with undetectable HCV RNA at the end of the study but with detectable HCV RNA during follow-up – had a SVR of 97%.

The better a patient did on standard care, the better their response to telaprevir plus standard treatment.

Overall, 75% of patients (60 of 80) with undetectable HCV RNA after four weeks of telaprevir treatment achieved a SVR.

During the last week of May 2010, Vertex announced results from ADVANCE; results that included: After 12 weeks of triple dosing with telaprevir, pegylated interferon and ribavirin, and a further 12 weeks of just pegylated interferon and ribavirin, three-quarters of treatment naïve patients with genotype 1 achieved SVR (“treatment naïve” refers to people who haven’t previously had treatment).

After just eight weeks of triple dosing with telaprevir, pegylated interferon and ribavirin, and a further 16 weeks of just pegylated interferon and ribavirin, 69% of treatment naïve patients with genotype 1 achieved SVR. In comparison, after 48 weeks of treatment with the currently approved regimen of pegylatedinterferon and ribavirin, 44% of treatment naïve patients with genotype 1 achieved SVR (this was the control group).

“The ADVANCE results confirm findings seen in earlier trials of telaprevir and highlight that telaprevir-based combination regimens may increase viral eradication rates and shorten treatment time for many patients,” said Dr Ira Jacobson, Gastroenterology and Hepatology, Weill Cornell Medical College and an Investigator for the ADVANCE trial.

European Association for the Study of the Liver (EASL) 45th Annual Meeting: Presented 15 April, 2010.

With such good news coming from the ADVANCE trial, Vertex has indicated that it expects to request FDA approval for telaprevir in the second half of 2010. That means that the long wait for an improved hep C treatment could finally be right around the corner.

• Abridged from http://tinyurl.com/2dbqzfl (20 April 2010).

• Abridged from http://tinyurl.com/27sfhcp (21 June 2010).

The Hep Review Edition 70 September 2010 51

research updates Why are men more prone to liver cancer?

USA – Researchers at Massachusetts Institute of Technology believe they’ve found a gender effect that may explain why men are more prone to liver cancer than women. It all boils down to the way males and females respond to chronic liver disease at the genetic level.

For the study, published in journal Cancer Research, the MIT team analysed mice, because like humans, they also have higher liver cancer rates among males. In both species, healthy males and females respond to acute toxins and other stresses, but the male liver is less well equipped to cope with the chronic inflammation induced by certain infectious agents.

To study this effect, the mice were infected with Helicobacter hepaticus, bacterium found in the gastrointestinal tract or in liver tissue of humans.

In mice, it produces the same hepatitis symptoms characteristic of human heps B and C. When the male mice developed chronic hepatitis, the researchers observed something unexpected.

Some masculine liver genes increased while others turned off allowing cancer to emerge in a significant number of animals. At the same time, some feminine genes were reactivated rendering females less susceptible to cancer.

The researchers had a hunch that a protective effect would emerge if male mice were castrated at one year of age when they had chronic hepatitis, but not cancer.

Researchers also gave some mice a powerful male hormone to see if that would promote tumours.

But neither intervention had any effect, demonstrating that male sex hormones such as testosterone do not directly promote liver cancer in adults.

• Abridged from http://tinyurl.com/2d9n8kv (25 Mar 2010).

Hep C treatment in drug treatment clinics: perceptions of clients and health workers Australia – Uptake of hep C treatment is very low particularly among people who have injected drugs. Opiate substitution treatment (OST) programs, with a high prevalence of people living with hep C, have been a site of growing interest in the delivery of hep C treatment.

There has been no exploration of OST clients’ and health professionals’ perceptions of the barriers and facilitators to uptake and delivery of hep C treatment in OST clinics from personal and organisational perspectives.

This qualitative study involved interviews with 27 OST clients in NSW and a focus group and interviews with 22 Australian OST health professionals. Clients and health professionals viewed hep C treatment in OST as a o ne-stopshop model which could increase access to and uptake of treatment and build on existing relationships of trust between OST client and health professional.

Elements of the organisational culture were also noted as barriers to hep C treatment delivery including concerns about confidentiality, lack of discussion about treatment and that treatment was not perceived by clinicians as a legitimate activity of OST clinics.

OST client participants also reported a number of personal barriers to engaging with hep C treatment including family responsibilities (and concerns about treatment side effects), unstable housing, comorbidities and perceptions of the unsatisfactory level of treatment efficacy. These findings emphasise the need for future research and delivery of services which addresses the complexity of care and treatment for people in marginalised social circumstances.

Uptake and delivery of hepatitis C treatment in opiate substitution treatment: perceptions of clients and health professionals. C Treloar, et. al. Journal of Viral Hepatitis. (Online) 13 January 2010.

• Abridged from http://tinyurl.com/2ceut6d (13 Jan 2010).

52 www.hep.org.au

research updates Two-weekly dosing with microsphere interferon USA – Dosing every two weeks with a microsphere-based, controlled-release version of interferon alfa-2b (CR2b) in combination with ribavirin is as safe and effective as weekly dosing with pegylated interferon alfa-2b (PEG2b) in combination with ribavirin in treatment-naïve patients with genotype-1 chronic hep C, researchers noted at the 45th Annual Meeting of the European Association of the Study of the Liver.

Efficacy of treatment (defined as the mean drop in viral load from baseline) was consistently higher for CR2b/ribavirin versus PEG2b/ribavirin until week 12, with indications that CR2b/ribavirin also provided more rapid reductions in viral load, again up to 12 weeks of treatment.

“We saw at least equal antiviral effects with extending the dosing interval by a week and, at the same time, a reduction in the flu-like symptoms side effects,” concluded Dr Walker Long, Biolex Therapeutics, Pittsburgh, Pennsylvania.

“Existing technologies can be improved if you find better ways of delivering the right dose,” he suggested.

Presentation title: Q2Week Controlled-ReleaseInterferon-Alpha2b + Ribavirin Reduces FluLike Symptoms >50% and Provides Equivalent Efficacy in Comparison to Weekly PegylatedInterferon-Alpha2b + Ribavirin in TreatmentNaïve-Genotype-1-Chronic-Hepatitis-C: Results From EMPOWER, a Randomized-Open-Label-12Week-Comparison in 133 Patients. Abstract 2010 • Abridged from http://tinyurl.com/2eacpbx (17 April 2010).

Hep C and solvent use among Canadian Aboriginal people who inject drugs Canada – Solvent abuse is a particularly serious issue affecting Canadian Aboriginal people. Here we examine the association between solvent use and socio-demographic variables, drugrelated risk factors, and pathogen prevalence in Aboriginal people in Manitoba, Canada, who inject drugs.

Data originated from a cross-sectional survey of Aboriginal people from December 2003 to September 2004. Associations between solvent use and variables of interest (hep C infection) were assessed.

A total of 266 people were included in the analysis of which 44 self-reported recent solvent use. Hep C infection was 81% among solventusers, compared to 55% among those reporting no solvent use.

In further examining the data, solvent-users were younger and more likely to be infected with hep C, to have shared needles in the last six months, and to have injected Talwin and Ritalin.

High hep C prevalence, even after controlling for risky injection practices, suggests that solvent users may form closed networks of higher risk even amongst an already high-risk drug injecting population. Understanding the social epidemiological context of initiation and maintenance of solvent use is necessary to address the inherent inequalities encountered by this sub population of substance users, and may inform prevention strategies for other marginalised populations.

Increased risk for hepatitis C associated with solvent use among Canadian Aboriginal injection drug users. S Souradet, et. al. Harm Reduction Journal 2010, 7:16 • Abridged from http://tinyurl.com/26vnv4h (19 July 2010).

The Hep Review Edition 70 September 2010 53

interferon-based treatment Interferon-based treatment

partner). Female partners of men undergoing treatment must not be pregnant.

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

Age: People must be aged 18 years or older.

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

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

Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each

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

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

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

type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.

People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12.

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

Note that some people with genotype 2 or 3 may still require

CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks.

Psychiatric status during therapy should be monitored.

A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peg interferon monotherapy 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.hep.org.au

complementary medicine biopsy to determine whether they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring.

See “Monitoring Points”, page 54.

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

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

For more information, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline (see page 56).

NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy.

Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre.

In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment.

• Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).

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

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see Edition 24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see Edition 45, page 9).

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

• Will they consider all relevant diagnostic testing?

• Will they consult with your GP about your hepatitis?

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

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

• What are the side effects?

• Are they a member of a recognised natural therapy organisation?

• How have the outcomes of the therapy been measured?

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner.

You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee.

It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done.

It is best if your doctor, specialist and natural therapist are able to consult directly with one another.

If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist.

If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association.

Phone the Hepatitis Helpline (see page 56) for more information and the contact details of relevant professional associations.

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

The Hep TheReview Hep Review EditionEdition 70 September 69 June 2010 55

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

• 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers).

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

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

Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW).

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

56 www.hep.org.au

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

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

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

Culturally and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds.

To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes some information resources in various languages.

The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au

Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment.

This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW).

support and information services 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 10.30–11 am, (Eastern Standard Time). Go to 3CR’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 Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390.

Gosford: 6pm-7.30pm on the last Thursday of each month at the Education Centre, Gosford Hospital Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast hep C support group A peer support group for people living with or receiving treatment for hep C. Meets every 3rd Monday, 5-7pm at the Coffs Harbour Community Centre. For info, phone Janet Urquhart, Social Worker, Coffs Harbour Health Campus on 6656 7846.

Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609.

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

Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light

refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466.

Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539.

Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0418 207 939.

Parramatta support group A support group for people living with hep C, including those in treatment. From 7pm to 8.30pm, first Thursday of every 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 info, phone Susan on 9845 5627 or Jamie on 9845 7419.

Sydney Central support group A chance for people living with hep C to meet others and get some support. We meet on the 3rd Tuesday of each month, from 6–8pm at Hepatitis NSW, Level 1, 349 Crown Street (corner of Crown and Albion Streets), Surry Hills. Food and drink provided. For info, phone the Hepatitis Helpline on 9332 1599.

Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C. It offers free and confidential services to affected people and their families and carers. For info, phone the Traids worker on 9515 5030 or 1800 108 098.

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 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 info, phone Susan on 9845 5627.

The Hep Review Edition 70 September 2010 57

noticeboard / promotions The most precious gift

Upcoming events

We hope that all readers – including those people living with hep C – will consider registering to donate their body organs.

Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time.

21 Sept, 19 Oct, 16 Nov. Level 1, 349 Crown St, Surry Hills. For more info, please phone 9332 1599.

Conferences:

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.

Australasian Viral Hepatitis Conference 2010.

The 7th Australasian Viral Hepatitis Conference is being held in Melbourne from 6-8 September 2010. For information, please visit the conference website at www.hepatitis.org.au

Complaints

Please phone 02 9229 4003.

If you wish to make a complaint about our products or services, please visit our website for more information: about-us/complaintsand-disputes-handling.

Do you want to help us?

Image courtesy of Google Images

We are a membership organisation, governed by a board elected primarily from our membership.

We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for The Hep Review and Transmission Magazine.

• proofreading for The Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker.

Want to find out more? Please phone the Hepatitis Helpline for more information (see page 3).

58 www.hep.org.au

Inner city Sydney support groups:

Or see page three for our phone number and postal address.

Paediatric viral hepatitis clinic Hep C and hep B occur among Australian children although exact numbers are unknown. Children affected usually feel well and often are unaware of their infection.

The Paediatric Viral Hepatitis Clinic at Westmead provides early diagnosis, monitoring and, in some cases, treatment of children with these infections.

Assessment and regular follow up is essential to provide optimal care for children with hep B or C to reduce the risk of significant liver disease in later life.

For more information, contact Janine Sawyer at The Children’s Hospital Westmead on 9845 3989 or by email: janines1@chw.edu.au

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

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Membership Our membership year begins on 1 March and runs to the end of February the following year.

All members (including Zero Fee members) are required to renew their memberships annually to retain member benefits.

For NSW health care workers One of our services is the NSW Hepatitis Helpline, an information and support phone line whose staff are able to refer callers to a range of services and health care workers in their local area (within NSW only).

If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular hepatitis information.

The Hep Review, the most widely-read hepatitis publication in NSW, targeting both people affected by hepatitis C and health care workers, is provided free to all members of Hepatitis NSW. If your service has clients or patients who may be interested in The Hep Review please indicate the number of extra copies you would like to receive.

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The Hep Review Edition 70 September 2010 59

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To become a financial member, please tick one membership fee box, below: Waged: for people in paid employment

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4. Contact with our 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.

All Hepatitis NSW membership fees are GST exempt.

For health professionals, our membership fees may be tax deductible.

If paying by cheque or money order, please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form to Hepatitis 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 here 9. Declaration – I accept the objects and rules of Hepatitis NSW and apply for association membership / renewal. I agree to my personal contact details being held by Hepatitis NSW and used in accordance with the association’s privacy policy.

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