Hep Review ED67 by HepatitisNSW

The Hep C Review Summer

December 2009

Edition 67

Crossing the finish line but the race keeps going: hep C posttreatment illness Hep C: a captive of the NSW prison system A long lifeâ&#x20AC;&#x2122;s secret ingredients Lambda gene and hep C Newtâ&#x20AC;&#x2122;s story: three little pills The Hep C Review

Edition 67

December 2009

editor’s intro Hello readers Some might say these three monthly editions come around too quickly. I say bring ‘em on – there’s a lot of hepatitis news to report on and our commissioned articles give lots of scope to be proactive with the magazine content. In a word, editing this magazine is EXCITING. Our two commissioned articles in this edition touch on: feelings of illness that continue after treatment finishes; and hep C inside NSW prisons. For those who experience post-treatment illness, our article on page 16 should be really interesting. It validates people’s experience and provides tips on dealing with worrying and persistent illness. Hep C inside NSW prisons is a challenge for Department of Corrective Services, Justice Health, Juvenile Justice, hep C health promotion workers and, importantly, the thousands of NSW prisoners and their families. We hope our article on page 34 adds to the important discussion around reducing hep C transmission in NSW prisons and better treating those prisoners who live with hep C. Other favourite articles of mine include A long life’s secret ingredients (don’t you love reminders about good old common sense?), Newt and Juz’s stories, George Shultz on the US drug war, and our research update piece on the Lambda gene discovery. Also in this edition is an article from Bob Barco – an ongoing feature we hope will build on our networking with NSW prisoners. That’s edition 67 – and a whole lot more! •

Ed Ps: my hep C clinical treatment trial continues. I’ve made it through the crucial week 12 point, hit week 16 and now it’s either eight or 32 weeks to go. So, what do I want for Christmas? A few good night’s sleep would be nice!

Council keyhole

The Council’s view on scare tactics in health promotion There is plenty of room for scare tactics in health promotion: witness photos on cigarette packs showing damage caused by tobacco; or look at the television to see a man who has just smoked a joint get wiped out by a passing car on a freeway. Another good example is the 1980s HIV/AIDS Grim Reaper campaign. But do we want these shock-tactic campaigns to prevent hep C transmission? Or would we want scare tactics to help increase the uptake of hep C treatment? Some people have proposed this for particular priority populations. A speaker at the 2009 Hepatitis Health Promotion conference in Hobart suggested shock tactics may help reduce HCV transmissions among people in Aboriginal communities who inject drugs. They suggested the Grim Reaper campaign was very memorable among Aboriginal people, and by implication, possibly brought about behaviour change through the regular use of condoms. As hepatitis organisations, we need to work with our partner Aboriginal community organisations in considering such suggestions. But we are not so sure about broad based, general population scare campaigns. On one level Grim Reaper was arguably legitimate because there was genuine fear that AIDS would spread through the heterosexual population. But Grim Reaper also caused unnecessary anxiety and fear among people involved in low risk behaviours. And worse, by implication of the underlying messages, people with HIV/AIDS (largely, gay men and people who inject drugs) were seen as causing the alarm and threat. And did the divisive Grim Reaper campaign really change people’s behaviour? What about the roles of NSP and peer education among gay men and among people who inject drugs?

(Continued on page 44)

Weblink of the month

Our weblink of the month is http://www.adca.org.au/ ADCA is the peak, national, non-government organisation providing a national voice for people working to reduce the harm caused by alcohol and other drugs.

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

www.hepc.org.au

Cover pic © by bowbrick, via www.flickr.com

acknowledgements Seeking your story

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang Gideon Warhaft Scott West

Personal stories provide a good balance to our information articles. Please consider writing in with your story. Published articles attract a $50 payment.

The HCR medical and research advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Yvonne Cossart, A/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

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.

S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Andi Andronicos Prue Astill Margaret Hancock Adrian Rigg Comic: Andrew Marlton Contact The Hep C Review: ph 02 9332 1853 fax 02 9332 1730

Seeking your ideas We want the magazine to remain relevant to you, the readers. If you have any ideas we can use as topics for our commissioned articles (e.g. see page 16), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’.

email paulh@hepatitisc.org.au text/mobile 0404 440 103 post Paul Harvey, HCCNSW, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney

Just phone and ask for Paul, or email paulh@hepatitisc.org.au or text us on 0404 440 103. Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) The Hepatitis C Council of NSW is an independent community-based, nonprofit membership organisation. We are funded by NSW Health. Aside from HCCNSW editorial comment, the views expressed in this magazine and in any flyers enclosed with it are not necessarily those of the Hepatitis C Council of NSW or our funding body. Contributions to The Hep C 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 C 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 stock photo models and the images are used for illustrative purposes only. The models have no connection to hep C.

The Hep C Review

Edition 67

December 2009

contents Letters Newt’s feedback

News US national summit held on viral hep

Worker in hep C case sentenced to 20 years

US hospital uses contaminated equipment

Seven million Indonesians have hep C

Key alcohol researcher dies

Clamour grows for heroin on UK health system 8 Trial to give free heroin in Canada

Hep C woman helps change Japanese politics

China halts mandatory hep B tests

Mongolian Prime Minister resigns with hep C

Review criticises hep C leadership

Half of drug injections still done with unsterile syringes 11 National health promotion conference

New national hep B and hep C strategies

Black tale wins journalist a spiritual experience 12 Swine flu jabs pose infection risk

St Kilda needle program success

Strategic progress in NSW

NSW police told to hold back

New name – same direction

Life threatening hospital mistake

Features Crossing the finish line but the race keeps going: hep C post-treatment illness 16 A long life’s secret ingredients

Treating hep C in methadone clinics: does it work? 22 Mint CEO was a trailblazer for women

Community consultation on attitudes towards drugs 2009

Social determinants of health: drug dependence 28 Hep C: a captive of the NSW prison system

All you need to do is ask

Treating hep C in the Hunter

My story Newt’s story: three little pills

Juz’s story: from childhood self medication to adult self management

Leonie’s story: walking the walk

Ian’s story: raising awareness on the inside

www.hepc.org.au

Opinion George Shultz on the US drug war

Promotions St Vincent’s Hospital Viral Hepatitis Clinic HALC hep C legal service Hep C Council support group meetings Hep Connect peer support service Transmission Magazine RPA Hospital sexual health clinic Hep C bookmarks Council website

19 44 46 46 47 47 48 48

Paediatric viral hepatitis clinic

Research updates Keeping hep C at bay after liver transplant 49 The lived experience of hep C among people who inject drugs 49 Hep B and C in NSW children 50 Hep C treatment in OPT services needs closer look 50 Hep C among young people who inject drugs: infection, resolution and reinfection 51 Cases of liver cancer reduced in a younger population vaccinated for hep B 51 The many faces of hep C: liver disease and type 2 diabetes 52 Experiences of hep C positive clients in AOD clinics 52 Hep C treatment among Indigenous people in Victoria 52 Lambda gene variant provides clue to treating hep C 53 Commenting on Lambda 53 Regular features Council keyhole – Scare tactics in health promotion 2 Resource of the month – What is hep C? 7 Q&A – What is meant by the term “carrier”? 15 Harm reduction poster – Arteries (part 1) 30 Hello Hep C Helpline – communication with people undergoing treatment 37 The little book of hep B facts 41 Membership matters 45 A historical perspective (from Dec, 1993) 45 Interferon-based treatment 54 Complementary medicine 55 Support and information services 56 Membership form / renewal / tax invoice 59

news

Stock photo - image via Google Images

letters

Newt’s feedback Thanks for a great edition 66. I found your recent feature on depression and the treatment very pertinent. I have in fact copied it and given it to a counsellor friend. I think there is a lot of ignorance about this issue. I also want to commend your article on drug trials. It was written in very clear English and was very easy to follow. I have a mate with a sick child who may be faced with a lot of questions you answered in that piece.

US national summit held on viral hep

I feel that with the prevalence of hep B in Islander and Aboriginal communities, you could be well served getting some sports stars on board to be part of an awareness campaign. Fui Fui Moi Moi, Jarryd Haynes, Christian Inu; in fact the Parramatta Eels team would have a huge impact speaking to the community. Also, there are Michael O’Laughlin and Adam Goodes from the Sydney Swans.

USA – Politicians, medical experts and community advocates met for a two day conference to develop a national action plan to combat hepatitis B and C in the United States.

I feel a kinship with the readers of our magazine and that is a big rap to you! Keep up the great work, and keep the articles coming. You could do mindfulness, realistic expectations, physical conditioning, yoga, etc. You don’t need me to tell you; you are doing it already!

The conference “The Dawn of a New Era: Transforming our Domestic Response to Hepatitis B & C” featured keynote addresses, panel discussions and scientific poster sessions focused on enhancing the prevention and detection of viral hepatitis and improving care for people who are already living with the disease.

•

Newt, NSW

(See Newt’s story on page 20).

The aim was to address this public health challenge. The meeting took place on 10-11 September in Washington, DC and involved planning an improved national response to viral hepatitis.

• Abridged from a news item http://tinyurl. com/yhcq42a (1 Sept 2009). To access the resulting conference report, go to http:// tinyurl.com/y99yr9s

The Hep C Review

Edition 67

December 2009

news Worker in hep C case sentenced to 20 years USA – A former hospital surgical technician who may have infected dozens of surgical patients with hep C by stealing their pain medication and swapping back needles tainted by the virus she carried has pleaded guilty to federal drug charges. The woman, Kristen Parker, 26, who could have faced a maximum sentence of life in prison on the most serious charges, accepted a 20-year prison sentence in a plea agreement with federal prosecutors. Ms Parker admitted guilt to multiple charges of tampering with a consumer product and obtaining a controlled substance by deceit. Twenty-seven patients at two hospitals where Ms Parker worked last year and this year, in Denver and Colorado Springs, have tested positive for a strain of hep C and have been linked to her care, according to state health records. Ms Parker’s guilty plea does not end the legal saga or the continuing investigation into how exactly the infections were transmitted and who might bear further responsibility. Ms Parker, wearing gray-and-white jail stripes and wiping away tears throughout the 40-minute hearing before Judge Robert E. Blackburn, did not make any statements in court beyond responding yes or no to the judge’s questions about the guilty plea. But her lawyer, Gregory Graf, said outside the courthouse that he thought the lesser sentence was warranted in part by his client’s cooperation with health officials and the police since her arrest. • Abridged from http://tinyurl.com/yhz3wmb (25 Sept 2009).

US hospital uses contaminated equipment USA – More than 1,800 patients at Broward General Medical Center, South Florida, were put at risk of being infected with hepatitis after bad practices involving IV bags. According to officials, nurse Qui Lan used the same drip bag on different patients on multiple occasions when proper protocol at the hospital is use new drip bags for each new patient. As many as 1,850 patients may have been impacted, but hospital officials said they don’t know for sure. Lan was suspended and then later resigned. She has since left the country. Lan did use new IV needles and the plastic tubing that connects the needle to the drip bag. But in some cases, she did not change the bag containing the saline solution. Broward General sent letters to thousands of patients to notify them of the problem. The letter asks for patients to immediately contact a physician and set up a screening for heps B and C and HIV/AIDS. In March, the US Department of Veterans Affairs also sent letters to more than 3,000 veterans who had colonoscopies at the Broward hospital informing them that improperly cleaned equipment might have exposed them to hep B, hep C and HIV. Postscript: Similar problems arose at Veterans Affairs hospitals in Tennessee and Georgia with more than 11,000 veterans potentially exposed to the unsanitary equipment. Records show that among the patients at the three hospitals who have heeded Veterans Affairs warnings to get follow-up blood checks, eight have tested positive for HIV. Twelve former patients have tested positive for hep B and 37 have tested positive for hep C. • By Todd Wright. Abridged from http://tinyurl. com/yeu3n45 (6 Oct 2009).

www.hepc.org.au

Seven million Indonesians have hep C

Key alcohol researcher dies

Indonesia – The Indonesian Health Ministry has reported that over seven million of Indonesia’s 240 million population have hep C, most of them male at a productive age. Data released by the ministry showed that the disease, which is one of Indonesia’s ten biggest triggers of death, spreads in 21 out of 33 provinces in the country. Dr Unggul Budihusodo, chairman of Indonesian hearth researchers stressed that prevention is the most effective way to avoid the disease, which is known as a silent disease – because of the way it infects people without showing the symptoms at the beginning. “Most do not realise that there has been hep C in their bodies. They come to see doctors after having the disease for years,” he said.

news

USA – Dr Charles Lieber, a clinical nutritionist who upset scientific dogma by showing that alcohol in excess can cause cirrhosis despite an adequate diet, died of stomach cancer on March 1, 2009. Dr Lieber devoted much of his career to promoting alcohol research as a legitimate science, countering a prevailing perception among doctors and the public that little could be done about alcoholism. In a classic experiment in 1974, Dr Lieber deciphered some of the ways alcohol can affect the liver and showed that it could convert various compounds in the body to highly toxic ones. “He was a giant in his field, probably the most eminent in the world in alcohol and the liver,” said Dr Steven Schenker, another such expert, at the University of Texas Health Science Center at San Antonio. • By Lawrence Altman. Abridged from http:// tinyurl.com/ybhf2t5 (10 March 2009).

• Abridged from http://tinyurl.com/ybosfxy (29 Sept 2009).

Resource of the month What is Hep C? pamphlet What is Hep C? is an easy-read pamphlet that provides an overview of hep C.

It is a virus th at lives in the blood and can make your li ver sick

The eight-paged, A5, full colour cartoon pamphlet features lots of images that are relevant to hep C at-risk communites. Initially developed in 2001, the resource has been recently reviewed and given a make over.

Lots of peop le in Australia have hep C

The resource aims to increase people’s awareness of hep C and either help them avoid contracting the virus, or if they already have hep C, to help them better manage their long term health. • In NSW, to order supplies phone the Hep C Helpline on 9332 1599 (Sydney) or 1800 803 990 (NSW) or download our fax back resources order form: http://www.hepc.org. au/documents/FaxbackOrderForm.pdf

The Hep C Review

Edition 67

Many people don’t know t hey December hav2009 e it 7

news Clamour grows for Trial to give free heroin on UK health heroin in Canada Canada – Two hundred drug users with chronic system dependence will be lining up for free heroin later UK – A pioneering trial programme prescribing heroin to long-term dependent drug users has shown “major benefits” in cutting crime and reducing street sales of drugs. Results of the programme were presented recently at a conference in London. An expert group set up by the National Treatment Agency for Substance Misuse to assess the programme has concluded that the approach should be adopted nationwide.

this year in Montreal and Vancouver at publicly funded clinics. They can thank the Canadian federal Conservative government, despite its hard line against drugs.

The prescription of heroin to drug users is one of the most controversial in medicine. Giving users drugs such as heroin on a maintenance basis, rather than weaning them off them, turns existing policy on its head and presents a challenge to ministers.

The three-year medical trial will put Canada on the leading edge of international dependence research “for a population that is in desperate need for alternate health options,” said Michael Krausz, the lead investigator.

Critics say giving drug dependants the drugs they were previously scoring on the street is not “treatment”, and the cost at A$26,600 a year per head cannot be justified when UK National Health Service patients are being denied the latest cancer drugs. But dependence experts say this is about “harm reduction”, not cure. Long-term heroin users are among the hardest people to treat and impose huge costs on the medical and penal systems. Ten per cent of drug dependants commit three-quarters of all acquisitive crime in the UK, official figures show. The existing government drugs strategy includes a commitment to roll out the clinics, subject to the findings of the trial programme. “We are dealing with a profound drug hunger and trying to medicalise it to break the link with street heroin use and crime,” said Professor John Strang, head of the National Addiction Centre, who led the study. • Abridged from http://tinyurl.com/p6u9vz (14 Sept 2009).

The trial – which will offer the drug in pill and injectable forms – builds on a similar heroin experiment last year that found most participants committed far fewer crimes and their physical and mental health improved.

But the project is only proceeding with the blessing of, and $1-million in funding from, the Canadian Institutes of Health Research, an agency of Health Canada. Prime Minister Stephen Harper has argued that taxpayer money should not fund drug use, but should be spent on prevention and treatment. The heroin trial not only provides a safe place to inject, but also the heroin itself. The drug is legally purchased in Europe and brought to Canada under armed guard. This research aims to determine if medically prescribed heroin is a safe and effective treatment, and if users will accept the drug in pill form instead of injecting it. It will also measure whether a licensed narcotic, Hydromorphone, can be used instead of heroin. The trial is called SALOME, the Study to Assess Longer-term Opioid Medication Effectiveness, and it will build on a similar heroin experiment that wrapped up last summer: the North American Opiate Medication Initiative (NAOMI) which was also funded by the Canadian Institutes of Health Research with the approval of Health Canada. • Abridged from http://tinyurl.com/yhhrmkx (1 June 2009).

www.hepc.org.au

news

Hep C woman helps China halts mandatory hep B change Japanese tests politics Japan – With the highest level of representation in Japan’s history, female Members of Parliament like Eriko Fukuda are challenging a maledominated system. Five years ago, Eriko Fukuda could have been forgiven for thinking that life had dealt her a poor hand. She had already abandoned her university studies two years earlier after discovering that she had contracted hep C as a baby. The side effects of her regimen of drugs and injections left her feeling weak and nauseous. For 18 months, she could do little except hope that the treatment would send the virus into retreat. When Japan’s parliament reconvenes tomorrow, the now hep C-free 28-year-old will be among the most visible faces of the political upheaval that swept the Democratic party of Japan (DPJ) into office in August, ending 54 years of almost uninterrupted rule by the Liberal Democratic party (LDP). She is one of 26 new DPJ women handpicked by the party’s powerbroker, Ichiro Ozawa, to take on LDP heavyweights in an overt appeal to voters disillusioned with old-school politics. His gamble has lifted female representation in the lower house to over 10% for the first time. Last year, she led a successful campaign to force the government to accept responsibility for allowing the distribution of tainted blood products that infected an estimated 10,000 Japanese with hep C, from the 1970s through to the early 1990s. But her path to political office was punctuated by smear campaigns targeting her health. “My opponents told people that if they voted for me they couldn’t be sure I would be healthy enough to represent them,” she says. “They said, ‘What if it all gets too much for her and she collapses?’ The silly thing was that voters could see me running around the constituency, full of energy.”

China – The Chinese government will stop mandatory hepatitis B tests in China for employees joining new companies and students enrolling in schools, state media said, after a court ruled the tests were illegal. Deng Haihua, deputy director of the health ministry’s general office, said the government would soon issue instructions to stop the practice, which is currently a requirement, the official Xinhua news agency reported. “A hepatitis B disease carrier does no harm to others’ health and the new practice will not increase the disease transmission,” Deng was quoted as telling a news conference on Saturday. A design company was ordered in May last year to pay a job applicant around 20,000 yuan (2,950 dollars) after it withdrew an offer because he had hepatitis B, according to the Hong Kongbased China Labour Bulletin’s website. The Beijing district court judgment was the first time a hepatitis case was successfully litigated in China, according to the group, which monitors mainland workers’ rights. Previous cases were settled through court-ordered mediation or private agreements, it added. The judgment was seen as a sign the 2008 Employment Promotion Law, which specifically outlawed discrimination against people with an infectious disease, had teeth, according to the China Labour Bulletin. • Abridged from AFP: http://tinyurl.com/yfudf7n (12 Oct 2009).

• By Justin McCurry. Abridged from The Guardian: http://tinyurl.com/yhdn9n2 (25 Oct 2009).

The Hep C Review

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December 2009

Mongolia – Mongolia’s parliament has approved the resignation of Prime Minister Sanjaa Bayar, who was forced to step down due to ill health, state television reported. The 53-year-old Bayar, who was seen as an economic reformer when he first became premier of the poor but resource-rich Asian nation in November 2007, said he wished he could have seen out his term. “I regret that I couldn’t finish what I planned to do,” he told lawmakers, according to images of the parliamentary session broadcast live on state television. “The government still has a lot of work to do.” Health Minister Sambuu Lambaa, cited by local media, said last month that Bayar was suffering from hep C, which causes liver problems, and had sought treatment in South Korea. Bayar took office after assuming the leadership of the Mongolian People’s Revolutionary Party (MPRP), which ruled the country for decades as a one-party communist state. Mongolia shook off communist rule in 1990 without a shot being fired, and the first democratic elections were held in 1992. The landlocked country, which is wedged between China and Russia, has struggled to develop a sustainable economy since turning to capitalism two decades ago. But its rich deposits of copper, gold, uranium, silver and oil have caught the eye of foreign investors. This year, the government sealed a multi-billiondollar deal with Canada’s Ivanhoe Mines and Anglo-Australian miner Rio Tinto to develop one of the world’s richest copper deposits, after years of negotiations. • Abridged from http://tinyurl.com/ycq4y26 (28 Oct 2009).

Stock photo - image via Google Images

news Mongolian Prime Minister resigns with hep C

Review criticises hep C leadership Australia – The national fight to contain hep C and other serious infections has been hobbled by a lack of leadership, and poor communication from the agencies nominally in charge. An official independent review of the national strategies set up to combat HIV, hep C and sexually transmitted infections has pointed the finger at a high-ranking federal committee, which it concludes failed to set goals or attempt to measure what impact its initiatives were having. The review found broad support for the strategies but much more criticism of the way they were overseen by the Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis and its three subcommittees. “The review has found no evidence that this type of ongoing monitoring took place ... it appears that there has been no collective national reporting against the implementation plans to indicate progress against the national strategies.” In addition, it pointed out that a 2002 review had identified various concerns, such as the need to raise the profile of hep C as a serious national health problem. The report noted that “these concerns remain current” and should be addressed by the replacement committee. “The governance structure has continued to suffer from a lack of role clarity, lack of administrative support, and a lack of co-ordination at a national level,” the report said. • By Adam Cresswell. Abridged from The Australian, http://tinyurl.com/yc5llxk (6 Oct 2009).

www.hepc.org.au

news

Half of drug injections National health still done with promotion conference Australia – The 2009 National Hepatitis Health unsterile syringes Promotion Conference Grass Roots to National Australia – Thirty million needles and syringes distributed every year in Australia over the past decade have ensured that 97,000 hep C infections have been averted, yet 50% of all injections are still with an unsterile syringe. The findings of the report, Return on Investment 2: Evaluating the cost effectiveness of needle and syringe programs in Australia, demonstrate that an increase in funding of needle and syringe programs is needed to curb the hep C epidemic. “At present, approximately 50% of all injections are with an unsterile syringe, yet the reality is people who inject drugs are unlikely to use another person’s injecting equipment if they have convenient access to sterile needles and syringes,” said Stuart Loveday, Vice President, Hepatitis Australia. “The supply of injecting equipment is limited and not meeting the demand; governments must invest in expanding needle and syringe programs as this report clearly demonstrates the benefits to both individuals and the economy”. Needle and syringe programs save lives, and are not only cost-effective, but cost-saving. For every dollar invested, four dollars are returned, as life threatening hepatitis C and HIV infections and associated healthcare costs are averted. “The $243 million spent on needle and syringe programs from 2000-2009 by the Federal and State governments, whilst saving $1,280 million in averted healthcare costs nationwide, could be bettered,” said Loveday. “A separate study has demonstrated that if there were a doubling of the amount of injecting equipment distributed, effectively decreasing the number of times each syringe is shared, new hepatitis C infections would be halved.” • Abridged from a Hepatitis Australia press release (22 Oct 2009).

Action, held on the 29th and 30th of November in Hobart, Tasmania, saw delegates from across the nation gather and saw the Hepatitis C Council of NSW bring home two awards. The Conference created a forum for the exchange of ideas, workshops to increase health promotion skills and the opportunity to explore methods of working collaboratively and engaging with communities was evident. Delegates were privy to many presentations which demonstrated that the cultivating of the grass roots mentality ultimately leads to national action. Many issues were placed in the forefront of delegates minds, many of which will be taken from the conference and implemented in the future health promotion projects of many organisations. Others will be the topic of conversations to come, such as the adoption, adaption or dismissal of the call for a fear based hepatitis social marketing campaign. Not only were the food and festivities provided at the conference dinner enjoyable, but Hepatitis Australia also took this opportunity to present, for the second time, two biannual awards. The ‘Excellence in Viral Hepatitis Health Promotion Award’ went to the project Street Shot, which emerged victorious from a field of 10 nominations. Street Shot worked with youth services to support them to both run a hep C health promotion workshop with at risk young people, and to develop a photo essay focusing on issues associated with the impact of alcohol and other drugs, unsterile tattooing and piercing on young peoples’ health in addition to social, moral or ethical challenges they face. The ‘Outstanding Service to the Viral Hepatitis Sector Award’ was presented to Stuart Loveday, HCCNSW EO and Hepatitis Australia President, who received overwhelming support from people with whom he has worked, or who have been touched by his compassion, generosity and spirit. • Rachel Stanton, Hepatitis Australia (4 Nov 2009).

The Hep C Review

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December 2009

news New national hep B and hep C strategies Australia – Early 2010 should see the launch of five national strategies covering viral hepatitis, HIV/AIDS and sexually transmissible infections. Of particular importance is the development of Australia’s first national hepatitis B strategy. This long awaited initiative will, over time, help address the health needs of the estimated 165,000 people living with chronic hepatitis B in Australia. Around 35% of those people remain undiagnosed, and, as with hepatitis C, treatment take-up rates are extremely low. More than 80% of people with hepatitis B in Australia acquired it at birth or in early childhood, and most people living with HBV are migrants from HBV endemic countries, and Indigenous Australians. Other priority populations include prisoners, people who inject drugs and men who have sex with other men. The third national hepatitis C strategy, as with those for hep B, HIV/AIDS, STIs and the national Aboriginal and Torres Strait Islander STIs and BBVs strategy will run from 2009 to 2013. The development process was overseen by the Ministerial Advisory Committee on Blood Borne Viruses and Sexually Transmitted Infections and the co-ordination was led by the Australasian Society for HIV Medicine – ASHM. The suite of five strategies will now go through a formal approval process. It is anticipated that this will culminate in each strategy being signed off by the Federal and State & Territory Health Ministers. This is seen as an essential step in the process of achieving a stronger commitment to implementation of the strategies at all levels of government. • Stuart Loveday, HCCNSW (27 Nov 2009).

www.hepc.org.au

Black tale wins journalist a spiritual experience Australia – Parramatta resident and SBS Living Black journalist Kris Flanders has produced many in-depth stories on Indigenous issues. However it was his story about the prevalence of hep C among Indigenous Australians that won him a major Hepatitis Australia journalism award. The Professor Geoff Farrell Award also gave Mr Flanders the opportunity to travel to Canada to do a story on Indigenous Canadians “My story, The Silent Epidemic, illustrated the personal stories of people living with hep C and the impact this had on their lives,” Flanders said. The story also discussed risk factors, the impact on long-term health, and information about how hep C can be spread, treated and prevented. “Winning this enabled me to travel to Canada and immerse myself in the Indigenous culture there, which was important on both a personal and spiritual level.” Flanders joined SBS 13 years ago as a production assistant in the Indigenous media unit. Living Black is on SBS on Mondays at 6pm. For more information go to http://news.sbs.com.au/ livingblack/ • By Olga Gerloff. Abridged from The Parramatta Advertiser (2 Sept 2009).

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Swine flu jabs pose St Kilda needle infection risk program success Australia – A planned national swine flu vaccination could lead to an outbreak of bloodborne diseases, infectious diseases experts say. The warning comes after Federal Health Minister Nicola Roxon announced that the government would release the first batch of swine flu vaccine, supplied by Commonwealth Serum Laboratory (CSL). In a letter to Commonwealth Chief Medical Officer Jim Bishop, the Australasian Society for Infectious Diseases president, Associate Professor Tom Gottlieb, expressed concern about CSL’s use of multi-dose vials for the vaccination. While the risk was slight, use of the larger multidose bottles could transmit infectious diseases if syringes and needles were reused, “resulting in considerable morbidity and mortality,” he said. “Many members are concerned that there is a risk of adverse outcomes if a mass vaccination campaign was conducted using multi-dose vials.” There was no guarantee stringent infectioncontrol guidelines would be followed in hospitals, “let alone clinics and general-practice units in the community,” Associate Professor Gottlieb said. But Professor Bishop said the government’s pandemic plan had always included the use of multi-dose vials because they were more efficient and could be distributed more quickly. • Abridged from http://tinyurl.com/ylzsmb3 (21 Aug 2009).

Victoria – Taxi drivers, tradesmen, body builders and local sex workers are among the growing number of people using St Kilda’s 24-hour needle and syringe exchange program – the only service that operates all night, every night in Victoria. The manager of health services for the Salvation Army’s Crisis Service, Sue White, said that since the Grey Street program started operating round the clock in late 2007, it had helped an extra 1000 people get clean equipment every month. An evaluation of the 24-hour service by the Salvation Army and Monash University found it had contributed to a 51% rise in the number of needles and syringes being distributed between August 2007 and September 2008. The number returned for safe disposal increased 26 per cent. Ms White said the service had prevented people from sharing equipment – a practice known to spread viruses including HIV and hep C. It had also exposed people to referrals for counselling, detox programs and other health-care services. The evaluation found that since the service extended its hours, there had been little change in drug-related crime or complaints to the local council. Ms White said other needle and syringe exchanges should consider expanding their hours, based on its success. • By Julia Medew. Abridged from The Age, http://tinyurl.com/y9b5ghl (6 Oct 2009).

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.

The Hep C Review

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December 2009

news Strategic progress in NSW NSW – Following its consultative mid-term review of the NSW Hepatitis C Strategy 2007-2010 in 2008/2009, NSW Health has released its response to the review’s recommendations. In summary, working in partnership with a wide range of stakeholder organisations and services over the remaining 18 months of the life of this strategy, NSW Health has undertaken to: • Reinvigorate the needle and syringe program and increase access to NSP • Develop a clear framework for hep C peer education framework among people who inject drugs • Conduct a broad, statewide hep C prevention campaign as well as targeted prevention campaigns • Conduct a statewide campaign on advances in hep C self-care and treatment • Develop a consistent statewide approach to hep C professional workforce development These are welcome initiatives that will add significant value to the recently announced investments of new funding for enhancing hepatitis C care and treatment services across NSW which will benefit all people in our state living with hepatitis C, and in particular, Aboriginal people with hep C.

NSW police told to hold back NSW – New South Wales police will be prevented from dispersing known drug suppliers and will be forced to consider social factors before making drug users move on, under recommendations to go before state cabinet in the coming weeks. Attorney-General John Hatzistergos, who approved the recommendations, would not comment on them. Confidential cabinet minutes show amendments to the Law Enforcement Act and standing operating procedures would introduce safeguards to police powers. The proposed amendments would force police to consider a person’s access to public transport before issuing a move-on order and could prevent the dispersal of drug-affected people from areas that do not have late-night public transport. Being affected by drugs would not be enough reason for a move-on order to be issued. Nor would it be possible to issue orders to people who have no excuse for being in an area or who are known drug suppliers or admit to being drug users. The presence of track-marks on a person’s arms would also be insufficient. Police advisers to the working party said there was no suggestion current powers had been misused. • By Erik Jensen. Abridged from The Sydney Morning Herald, http://tinyurl.com/yc6sxyw (27 Sept 2009).

• Stuart Loveday, HCCNSW (27 Nov 2009).

New name – same direction NSW – At our AGM on 12 November our Council’s membership voted overwhelmingly to change our name to Hepatitis NSW. This move was accepted by the NSW Office of Fair Trading on 23 November, so from now on, the Hepatitis C Council of NSW shall be known at Hepatitis NSW Incorporated – or simply, Hepatitis NSW. The change positions us to be able to apply for new funding to expand and take on work on behalf of people with hep B. Additionally, it

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makes our organisation friendlier for people with hep B to access. We assure our members and our other communities of interest that our focus on hep C will not diminish. We have a very long way to go before there is adequate access to care, treatment and support for people with hep C and before new hep C transmissions are prevented. • HCCNSW

news

Life-threatening hospital mistake

Q&A:

NSW – More than 200 people in and around Inverell will be feeling distinctly nervous right now. They have been rung by staff from Hunter New England Health with the news that as the result of a simple, but ongoing, mistake they have been exposed to the risk of infectious diseases such as hep B, hep C and HIV. Apparently a tube designed for one use only was used continuously during gastroscopies and colonoscopies at the Inverell Hospital from February to the end of August. Incidents such as these can cause major alarm, particularly in smaller and close-knit communities such as Inverell.

What is meant by the old term “carrier”? The term “carrier” is used generally to describe someone who has a transmissible infection yet is in good health. But with hep C, it is not a useful term and it’s better to use more descriptive terms: With hep C, there are four basic states: • The initial six month period when someone is first infected: acute hep C • The people who naturally clear the virus at the end of this stage: hep C cleared • The people who don’t clear and have a lifelong infection: chronic hep C

A significant proportion of the population – many of them elderly and infirm – will have been affected by this. An offer of counselling, while welcome and appropriate, will not in itself help those who have been exposed to the risk of infection sleep easier at night. • Abridged from The Northern Daily Leader (19 Sept 2009). Of 218 patients affected, 217 have had followup blood tests. While most patients have been given the all clear, some will need to be tested again in three to six months. Ed

• The people who clear their chronic infection with hep C treatment: hep C cured Further, those people with chronic hep C might see themselves in terms of illness: • People who don’t feel ill from their hep C: asymptomatic • People who do feel ill from their hep C: symptomatic. For more information, please contact the Hep C Helpline (details on page 3).

Living with Hepatitis C

watching tv

eating breakfast catching the train shopping for vegetables reading a book

Please note there is no joke in this cartoon, just people living with HCV The Hep C Review

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December 2009

feature

Crossing the finish line bu hep C po

Youâ&#x20AC;&#x2122;ve finished treatment for hep C Writing for The Hep C Review, Adria

Image ÂŠ by bowbrick, via www.flickr.com

he issue of post-treatment support is getting more attention from state hepatitis organisations and research bodies. Dr Max Hopwood, at the National Centre for HIV Social Research (NCHSR), has undertaken a qualitative study of hep C treatment outcomes for individuals. The study intends to identify some of the issues which arise for people on finishing treatment. Increasingly, some clinics, such as the Central Coast Health Service Liver Clinic, offer ongoing support after treatment has ended. Helen Blacklaws, a CNC at the Clinic, and Dr Hopwood have shared some of their findings.

www.hepc.org.au

Most people understandably expect that finishing hep C treatment will be one of the happiest times of their life, especially if they have cleared the virus. However, the end of treatment does not always mean the end of side-effects or symptoms of liver illness; many people continue to feel ill for weeks or even months. Unfortunately, formal relationships with hep C treatment health care workers can lapse on the day that treatment ends.

feature

ut the race keeps going: ost-treatment illness

C but still feel ill and it’s impacting on your day-to-day life. What do you do? an Rigg explores this reasonably common situation. Who needs post-treatment support?

Why is there a lack of post-treatment support? Unsurprisingly, funding is a major obstacle to post-treatment support (Blacklaws 2009; Hopwood 2009). The current model is set up to help as many people as possible onto treatment and successfully through it. It assumes that once treatment ends – whether hep C is cleared or not – the job is done, at least for now. Of course, many health care workers have a strong sense of duty of care and encourage their patients to seek follow-up support, but it can be difficult to administer this without a formal program. Treatment centres are often unable to offer such support; they need to concentrate their resources on those undergoing treatment. Dr Hopwood found that some people feel once they have finished treatment their clinic wants nothing more to do with them. This may be a false perception, created by the caseload of a clinic, but the outcome is the same – no support for those who need it. Dr Hopwood noticed that there have been many studies about the effects of interferon on people undergoing treatment, but there is very little publicly available information about posttreatment illness, and almost nothing about possible long-term effects. His study found anecdotal evidence that a small number of people experience long-term symptoms such as “brain fog”; however, until this is formally studied and quantified, it is unlikely to be of interest to funding bodies.

Some people experience feelings of illness after treatment that are quite different from those they had during treatment. For example, some people may have no depression while taking interferon, but experience it once treatment has ended (Hopwood 2009). This can be confusing and frightening, and it may not be clear whether it is caused by the interferon, or by something else. Whatever the cause, having someone to talk with and provide advice would help. People who have not cleared hep C may feel down after treatment ends. Add to this some ongoing side-effects and the thought that no one cares about their health any more, and they can feel very alone. Emphasising the positives of treatment – that their liver has had a rest for a period, and that they may be less likely to develop liver problems in the future – can help. Access to support at this time would help people adjust to their situation, and to look to future possibilities such as retrying treatment or participating in treatment trials (Hopwood 2009). For those who clear hep C, the time after finishing treatment can be just as confusing. They expect to feel wonderful and optimistic, and their families and friends may expect this too. Not feeling this way can cause guilt and stress (Hopwood 2009). Being told before treatment started – perhaps more than a year ago – that you may feel unwell for a period after treatment, may not prepare you for the disappointment of lingering illness (Blacklaws 2009). Having the support of health professionals who understand what you are going through would help a lot.

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December 2009

feature Adjusting to life after treatment It is generally accepted that people who have undergone long-term treatments may experience feelings of disconnection once the appointments and support services end. This is a separate issue to ongoing side-effects from treatment, but could be addressed in post-treatment support. There are already support programs in place, such as those for cancer survivors; Dr Hopwood suggests that these could provide a good model for post-hep C treatment support.

managing side-effects. Some people also have financial issues at this time; financial assistance during the post-treatment period could take some pressure off.

“Telling your GP that you have recently ended treatment and giving them the contact details of your treatment CNC can help keep track of issues, and allow a coordinated approach to any ongoing Of course, some people want to put the experience problems.” behind them, and are eager to escape the treatment routine (Hopwood 2009). For this reason, the formal aspect of any follow-up treatment should not be presented as a compulsory part of treatment, but as an option for those that feel they need it (Blacklaws 2009).

How could post-treatment support be provided? People undergoing treatment at the Central Coast Health Service Liver Clinic are given an information sheet when they are nearing the end of treatment. This summarises what they can expect to experience, and what they can do to help themselves feel better. Helen Blacklaws says that there are additional support services for those who want them: “ We also have our support group which is open to people who have completed therapy.” The clinic follows-up with three- and six-month appointments. In the meantime, people are encouraged to visit or call if they need to talk. Helen says that few do; people don’t want to feel like they are making a nuisance of themselves, and they know how busy staff are. By the time of the three- and six-month appointments, many people have passed the worst of the side-effects by coping on their own; they may appreciate some extra contact during this time. “This could be done by way of an interim visit between finishing treatment and the three-month post visit,” suggested Helen. This would help people to feel connected and allow them to deal with any concerns as they occur. Such follow-up is excellent for the people who attend those clinics, but a formalised post-treatment program across the board would help more people more effectively (Hopwood 2009). It could also provide more consistent support, with health professionals working together to ensure that all aspects are covered, from diet and exercise to

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How could people be better supported with current resources? For some people, their GP can be a good source of support and information. Telling your GP that you have recently ended treatment and giving them the contact details of your treatment CNC can help keep track of issues, and allow a coordinated approach to any ongoing problems. Another simple but effective way people can get support is to ask for it! As Helen suggested, your treatment centre may be able to provide the support you need, or refer you to someone that can. For some people, just knowing that support is available if they need it is enough. As with all aspects of health, knowledge and understanding are key factors. Max Hopwood and Helen Blacklaws agree that part of making an informed decision is understanding that side effects and feelings of illness may continue post-treatment, and that there is currently little formal support for this. This may not affect someone’s decision to start treatment, but it will help prepare them for the treatment journey. Part of that entire journey is the post-treatment period; incorporating it into the treatment program would help people successfully complete treatment, and get back to their normal lives sooner. • Adrian Rigg is a freelance health writer who writes for The Hep C Review: adrian.rigg@ yahoo.com.au The booklet, Moving on after treatment, available from the Hep C Helpline, provides good information and advice about life after treatment. The Hep C Helpline and the peer support service Hep Connect offer support to all people affected by hep C, including those who have completed treatment. Ed

promotion feature

A long life’s secret ingredients What are the secret ingredients of a long life? The answer is pretty simple according to the ABC science reporter, Dr Norman Swan.

Image © by bravenewtraveler, via www.flickr.com

large study in the UK suggests you can boil the ingredients of a long life down to just four factors and they don’t require much money or a major change to your life. The researchers have followed the health and wellbeing of about 25,000 people, who were aged between 40 and 80 when enrolled in the research and have had things like their nutrient intake and exercise measured more accurately than many other such studies. The four factors were not smoking; moderate alcohol intake – that’s not more than two standard drinks a day; five servings of fruit and vegetables a day; and moderate physical activity. People who did all four had a survival comparable to someone who was 14 years younger. These were achievable things most of us can do. The alcohol finding though, contradicts other studies which suggest there’s no net benefit from moderate intake, but the researchers think that in middle age, the heart effects of a daily drink win out.

There was another factor that made a difference to longevity – a psychological one – and that was the sense of what’s called coherence, how meaningful and manageable you feel your life is. None of which can be bought at your local pharmacy but all of which, apart from the wine, come pretty cheaply. • Abridged from http://tinyurl.com/om23sp (18 May 2009).

St Vincent’s Hospital Viral Hepatitis Clinic Trials Trials for patients with hepatitis C The St Vincent’s Hospital Viral Hepatitis Clinic in Darlinghurst is recruiting patients for trials with new therapeutic agents, including combination therapy with pegylated interferon, ribavirin and newly developed protease inhibitors. Image via www.images.google.com

For more information about clinical trials, see ‘A guide to medical trials: what’s in it for you?’ Hep C Review, ED66, page 20. • For further information about hep C clinical trials at St Vincent’s Hospital, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au

The Hep C Review

Edition 67

December 2009

my story

Newt’s story: three li

It’s the end of an era for me; a period of time measured in weeks, in days really, (hours in fact) as completing this hep C program has been my

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short term goal, in the last eight weeks, and I‘ve almost achieved it. Strange, now it’s this close, because I made a lot of mistakes on this program. I was using heroin throughout the treatment; in fact using heroin for the last twenty-five years, that’s more than half my life – this is what got me the virus in the first place, and here I am, trying to get well, and I am still whacking up! I didn’t tell the doctors, I didn’t tell the nurses, and I sure as shit didn’t tell my partner. It was all going good, it was going so well; my using was under-control; no-one was the wiser. I was on a treatment plan for hep C that was manageable; I was tired, but not too badly knocked around. My main problems were a saddle of itchy rashes, across my shoulders and back, that drove me insane; fatigue and mood swings that got progressively worse. The worse

Image by Paul Harvey

n about four hours time, I will be taking the last of my pills; the pink Ribavirins that have been a constant for the last six months. The final tablets will be taken from the plastic dispenser, which has the week divided into seven days, and each day halved into a red slot and a blue slot: red for the morning, blue for the evening. Filling those little divisions of ‘am’ and ‘pm’ with pills on a Tuesday night and sticking to the Pegasys system, have been the routines by which I have led the last half year of my life: two pills in the morning, three at dinner; seven days a week, for twenty-four weeks. I have completed the course of my injections: the last, six days ago, and now I am left with just three little pills.

my story

ittle pills they swung, the more I used; the more I used, the more fatigued I got and the more my moods swung, making me use more!

They were great; patient, supportive and they really helped me to clarify my thoughts and get some treatment strategies for my drug problem.

My drug use spiralled out of control, and one day, eight weeks ago, my wife said to me: “You are using!” It was not a question, it was a statement of fact, and I was too tired, too exhausted from the lies and pretence to deny it. “Yes,” I nodded. It was a major admission and it kick started huge changes in my life.

The hep C interferon and ribavirin treatment known as combination treatment affects everybody differently, but chances are, it will affect your moods. You are more on edge, emotions are closer to the surface; you have got doubts and fears and that’s just your psyche!

The first thing I did was to tell the nurses and my case manager at the clinic exactly what I had been doing. I told them everything I had been up to, and where I was now. Then we discussed how we were going to tackle the rest of my program. They listened, they didn’t judge, they didn’t actually care – they had heard it all before and they just wanted to know what I planned to do next. So now, all of a sudden, I am making plans, I have got a future! Not only that, I have got a goal – an achievable goal, an attainable target, and they are going to do everything they can to assist me to hit that target! I think it was this – this no guilt, no fuss, and no nonsense approach as much as anything that helped me get some perspective. We set a short term goal of completing the Pegasys program. Against good advice, I got off Methadone and on to Suboxone. That was really difficult, absolutely hideous. I was ill-prepared and I would not advise anyone to make that change. However, for me, it was the right choice; it was the only choice! It got me off something that had enabled my drug use for the last ten years. And so, I threw myself into my recovery. I had a goal, I had a plan and now I had support. The clinic had provided counselling but I had never taken it seriously or I had used it cursorily. Now, I was talking to them, I was telling them my fears. I was raging and crying and cursing and listening and learning; it was wonderful. If you learn nothing from my story, learn this: use the structures the clinics have in place. Let them help you! Ask them in! You don’t have to like them; you just have to talk to them! I saw whoever I could on any given day. I went twice a week at the start, then once a week as things settled down.

Physically, you can have rashes, fatigue, cold sores, ulcers, dry skin, itches, insomnia, loss of libido, weight loss and appetite loss. You can feel like you are falling apart. I had all this, and I had a pretty good run! (Except for the itching – it drove me mad!) When you throw in the day-to-day dramas of life, work, friends and family as well, it is a big ask to get through it without a bit of support, without a bit of guidance, without someone to help you navigate a course through the worst of the treatment. Talk to the counsellors; they have got the experience. They have seen it play out, they know how it works and best of all, they are there just for you. Your nurses and your case manager are your advocates, they work for you. They have your interests at heart and they want to help you get through your treatment. I am working on salvaging my relationship; I am working on salvaging myself and I’ve got three tablets to take in four hours’ time and it will be over. Not done, not complete, but this stage of the treatment will be over, and I am prepared to deal with what’s next. In a way, the outcome is irrelevant to me; it’s been about the process. I know I am going to be clear of the bug, I know it! So much positive has come from this: I am ready to deal with whatever happens, either way! There is so much more to this treatment than having to take 35 pills and an injection a week. It’s going to change your life, one way or the other. Be a participant in your own recovery and use all the resources, demand them. Talk to your nurses and your case manager, talk to the CNC, they are there for you, they are your team. Seven-fifty pm – I took my last three pills... and my wife was there.

•

Newt, NSW.

The Hep C Review

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December 2009

feature

Treating hep C in methadone clinics: does it work? An overview of the Enhancing Treatment of Hepatitis C in the Opioid Substitution Setting (ETHOS) project by Alexa Gillman and Marianne Jauncey.

pproximately 41,000 people in Australia receive opiate substitution therapy (methadone or buprenorphine) and it’s estimated 50% have chronic hep C. This population is growing in size yet very few people receive treatment for hep C.

Treatment outcomes in this group are comparable to the general population and many people on opioid pharmacotherapy treatment consider hep C treatment. Yet there are a number of continuing barriers to hep C treatment: some specific to practitioners; others to the clients and the setting itself. Some clinicians may be concerned that adherence to hep C treatment will be sub-optimal and people’s risk of hep C reinfection will be high. Additionally, there are issues related to lack of hep C treatment knowledge amongst both clients and practitioners, client co-morbidity, treatment side effects and perceptions of discrimination. Historically, hep C treatment services have been within hospital settings but co-location of hep C treatment services in drug dependency clinics has the potential benefit of accessing a large pool of people already integrated into a health care service. Additionally, existing rapport with clinic staff may aid treatment uptake, and reduce the sense of stigma for clients. Researchers at the National Centre in HIV Epidemiology and Clinical Research are conducting the ETHOS study to learn more about, improve and increase hep C treatment uptake and outcomes among people receiving opioid substitution treatment. Factors that influence treatment uptake and response to therapy among this group will be examined. The standard hep C treatment efficacy parameters will be used. Among subjects achieving a sustained virological response, the rate of re-infection will also be prospectively evaluated.

www.hepc.org.au

The ETHOS study is currently running at six clinics in NSW and aims to recruit 300 people in the first year. Inclusion criteria are: documented chronic hep C infection; and a history of injection drug use. Clients attending the participating clinics are encouraged to see a hepatitis nurse and invited to join the study. Comprehensive standardised data is collected six monthly via questionnaires, case note review and pathology tests. Data collected includes demographics, medical and psychiatric history, drug and alcohol use, hep C assessment, willingness to undergo therapy and subsequent treatment uptake. Study participants are requested to return to the clinic every six-months to complete blood tests and questionnaires. This is in line with standard recommendations for all people with chronic hep C. The study recently commenced and to-date a total of 38 people have been enrolled. Their profile is reflective of the broader community of people receiving opiate substitution therapy in NSW (older unemployed males make up the majority) with more than 50% reporting a history of treated psychiatric illness. The vast majority (97%) reported being somewhat willing or definitely willing to undertake treatment in the future, and 23 people were referred from the nurse to see an hep C specialist. Twentytwo of the 23 people referred to a specialist have attended to date, and of the 18 who had treatment recommended by the specialist, seven have already commenced. The ETHOS cohort will expand and we hope to begin recruitment from clinics in other states and territories in 2010. International collaboration is also being discussed. We will bring you updates in The Hep C Review from the ETHOS Cohort as they become available. • Alexa Gillman and Marianne Jauncey are both researchers at The National Centre in HIV Epidemiology and Clinical Research, Sydney and coordinate the ETHOS Project. Also see the separate OTP research article on page 50.

obituary

Mint CEO was a trailblazer for women

anine Murphy, who advanced Australian public policy on a wide front, including trade, taxation, superannuation, insurance, pensions and international finance, played a part in negotiations over the US-Australia Free Trade Agreement and became chief executive officer of the Australian Mint in Canberra. “She pushed the prominence of women in the senior ranks of the public service,” said Ken Henry, the Treasury Secretary, adding, “not just outstanding among her generation of Treasury officers, but one of the most outstanding female officers of any generation in the department’s 108-year history.” Janine Murphy, who has died after a long illness, worked in Treasury for 33 years but was only 54. Janine Ruth Thomas was born in Adelaide, the third of five children, of Collin Thomas and his wife, formerly Mollie Burnell. Her father called her Sunshine. She knew her own mind and spoke it even at an early age. She was school captain and dux of her leaving year, topped the state in biology and gained a scholarship to Flinders University, where she studied economics and political science.

Graduating in 1975, she was one of about 20 graduates recruited into Treasury in 1976. Of these, two went to the Financial Institutions Division: Janine Thomas and Jim Murphy. They went out together the following year, when Jim took Janine to her first game of rugby league. Well into the second half, she asked: ‘’Why does your team drop the ball so often?” She never saw another game and he decided his time was better spent doing things with her. They married in 1978. Janine Murphy laughed a lot, was charming and interested in things that mattered to the people around her, seeking to improve their working environment. She introduced English conversation classes for employees for whom English was a second language. The Murphys discovered in the mid-1990s that she had contracted hep C from a blood transfusion in the mid-1980s. Specialists said her general health was not robust enough to undergo rigorous treatment and that a liver transplant was inevitable. She spent five weeks in Royal Prince Alfred Hospital after the transplant in January 2009 and two weeks as an outpatient but never recovered full health.

Image © courtesy of www.ramint.gov.au

• By Tony Stephens. Abridged from The Sydney Morning Herald http://tinyurl.com/yl5l2xm (22 Sept 2009).

The Hep C Review

Edition 67

December 2009

my story

Juz’s story: from childhood s to adult self management

just wanted to get rid of my hep C but I was nervous about trying treatment again. I found a new specialist who was an amazing support to me. Before going on treatment, he referred me to a psychiatrist for anti-depressants to stem any possible panic attacks. Ironically, the only symptoms I didn’t have were anxiety and depression!

I found an online support group – www. hepCaustralasia.org – and it was an incredible experience. Before then I had been isolated and introverted with my illness. The website brought together an amazing community of people with hepatitis and gave us a forum to discuss treatment, discrimination, fears, successes, gardens, kids, dogs and anything else you can think of. These people shared my treatment journey from the first injection through the subsequent months. Treatment was a vastly different experience this time around. I had amazing support mechanisms in place; I was much less afraid. It was a very positive experience and I am very grateful to the people who shared the journey with me. My specialist deserves a medal for getting me through treatment. He didn’t sit on the other side of the desk and dictate to me. He was a partner with me in the decisions about my health. I think partnering with medical practitioners when you have a chronic illness is a critical step in selfmanagement. I am in my 40s now and have the confidence to drive decisions about my health. It comes from working in a career where you lead projects and use your initiative. I would like to see people with a chronic illness getting support or training in how to partner with their medical practitioners. I think the culture of medicine doesn’t naturally encourage the partnership model and therefore patients need to be encouraged to actively engage in this process. You can be emotionally volatile on treatment. It is critical that anyone going on to treatment is given information about support networks. Combination treatment requires ongoing support from a range of sources – not just the clinics or specialists. Hepatitis organisations can refer people to great

www.hepc.org.au

resources – from advisers on health and nutrition, to the online support network, to support groups in local and regional areas. People shouldn’t have to go through it alone. During the first six months of treatment I had significant side effects but managed well. But after six months I was shattered. I dragged myself through each day. At one point I was on over 90 tablets a week and only 35 of those were ribavirin. The rest were to manage the side effects. I had so many different side effects that I could write a manual on it. In the end, I decided with my specialist to finish early at around 40 weeks. I remember thinking that I didn’t care anymore. I was just so exhausted. There was new research suggesting people who are PCR negative at four weeks might only have to do 24 weeks of treatment instead of 48. I didn’t have a PCR at four weeks but I was PCR negative at 12 weeks and everyone was confident that I was going to clear. I didn’t think I was jeopardising my chances of clearing by coming off treatment at nine months. After I stopped treatment I ached all over and felt miserable for about three weeks. Then I started to feel great. I vividly remember standing at the sink two months after I finished and saying to my husband how great I felt. I thought “if this is how other people feel, what a fantastic way to live your life”. We both thought I was going to clear. About two weeks later, we went into Federation Square for the day. I had noticed a stitch in my side in the morning. It wasn’t until an hour or two later that I realised that the pain was in my liver. I went and got a test the next day. My ALTs were up. It was all over red rover. I’d relapsed. I wasn’t mentally prepared for a relapse. Everybody thought I was going to clear. At first I was terrified. What did this mean for my future and the future of my family? Then I was furious at everyone. I was angry at my specialist even though he had done nothing to deserve it. I was angry with everyone who had flippantly said that I would clear. It was a terrible shock which took me many months to recover from.

my story

Image © by Stephan Geyer, via www.flickr.com

self medication

Before you do treatment all you can think about is starting. When you’re on treatment, all you think of is finishing. But when you relapse, and you are looking at a future with ill health, it is like being reinfected over again. In the www.hepCaustralasia.org online support group the only people who understood my relapse were the people who had relapsed themselves. People on treatment understandably don’t want to know – it is frightening to them. People who haven’t been on treatment still have the hope that future treatment will clear them. I got fantastic support from the website whilst I was on treatment, but once I had relapsed I turned away from the site for many months. It is easy to discuss being on treatment and hep C when you might get rid of it. But I couldn’t face being reminded of my hepatitis after my relapse. I wanted to ignore it and get on with my life. Recently, people have asked me if I would do treatment again. I would do treatment again in a blink of an eye. It is a relatively short time in your life and absolutely worth the effort if there is a chance of clearing. But could I go through a relapse again? That’s a different story. The hardest thing about the relapse was the loss of hope. Like all relapsers and non-responders, my sight is on the new treatment regimes with the protease inhibitors and polymerase. My specialist will keep me informed about the trials, but I don’t have the same hopefulness. There is

a lot to lose if the next round of treatment fails. I am now cautiously interested in treatment rather than naively optimistic. After the relapse, I am more interested in selfmanagement: good diet, exercise, rest, relaxation, focusing on the day instead of the future, etc. I am forcing myself to slow down and I resent it – not being able to work more hours, sit on committees, travel, study at night, bushwalk. I want to feel a part of things and I hate feeling different. On the other hand, hep C makes me look at what is valuable in my life. It’d be easy to say if I didn’t have my hep C that my life would be perfect, but I’m sure this wouldn’t be the case. Hep C is like a dysfunctional family member that you have to make peace with when you would rather run screaming for the hills. I hate my hep C but it is part of me – for better or worse. I was thinking recently about whether I would stop being a “hepper” (that’s what we call ourselves) if I cleared. And I knew I wouldn’t. Hepatitis came from some fundamentally defining moments in my life and continues to take me in unexpected directions. It has shaped me as a person. I will always be a hepper because of everything it has brought to my life – both good and bad. •

Juz, VIC. Part three of three. See previous two editions for our abridgment of Juz’s story. Alternatively, see Juz’s full story on www.hepatitisaustralia. com/about_hepatitis/personalstories. html#Justine

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December 2009

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Community consultation on a Community survey calls for the national drugs budget to be balanced in favour of prevention and harm

nex, Australia’s leading non-profit public health organisation on drug issues, has announced the results of an Australian community survey on drugs and harm reduction. The survey results expose the need for improved education and awareness surrounding drugs, their affects and responsive public health measures. Research conducted earlier this year of 500 people aged from 18 to 79 years has reported the community’s desire to rebalance the current Australian Government’s drug budget. Results from the survey show the community wants expenditure allocated to increase funding of prevention initiatives and programs that reduce the harms of drugs for users and the broader community. Anex’s CEO John Ryan commissioned The Social Research Centre to conduct the Drug Issues and Harm Reduction: Community Attitudes and Knowledge Survey so that Anex could ascertain the levels of understanding of drug related issues amongst the general public. “On the eve of a new national drug strategy being delivered by the Australian Government, this survey on drugs suggests the government should adjust the corresponding budget in order to put more resources into education and harm reduction,” said John Ryan. “The community was concerned that the allocation of Australia’s national drug budget was unbalanced and reported a desire to continue to fund law enforcement but to dramatically increase prevention and harm reduction programs,” said Ryan. The current national budget for drug prevention and response allocates 56% to law enforcement, 22% to education for prevention, 19% to treatment and only 2% to reducing the harms caused by drug use. The survey found that the community wants funding for harm reduction increased to 22% of the total budget, prevention education increased to 33% and a commensurate decrease in law enforcement related funding component to 22%.

www.hepc.org.au

“There was an extremely high level of contradiction within the survey responses, which shows us there are large gaps in the community’s understanding of drugs despite ongoing education and awareness campaigns,” said Ryan. Anex found respondents’ answers were largely motivated by a fear of drugs and a need to protect themselves, their family and friends. The survey showed 62% of respondents believed that dependence is an inevitable consequence of drug use. Yet nearly half of all respondents had tried cannabis and as many as one in five had sampled other illicit drugs, such as ecstasy, ice, or cocaine. “For the past 12 years Australians have been exposed to a ‘war on drugs’ style rhetoric, which has had a large emphasis on law enforcement and ‘scare-tactic’ educational campaigns. But the community is looking for a more balanced approach,” said Ryan. The community showed considerable concern around drugs and drug use. Most people (86%) would be worried if someone close to them was using drugs, while 85% of people regard drugs as a serious problem in our society. A further 77% think the problem is escalating. “Statistics show one in seven Australians use an illicit drug. No one sets out to become drug dependent, yet more than 78,000 Australians are. Now more than ever we need to continue to have systems in place to protect and support the vulnerable in our society,” said Ryan. “Rather than having a rational understanding of drugs and the effects of drugs, the general public is fearful and tends to want to put distance between themselves and the problem.” “This distance means people are less inclined to engage in understanding the critical public health measures that are in place, such as Needle and Syringe Programs, and it cements the social marginalisation of people who are vulnerable to drug use,” said Ryan.

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attitudes towards drugs 2009 reduction, writes John Ryan. Less than half of respondents knew how to safely dispose of a discarded syringe with almost a quarter of people saying they would put the unprotected needle straight in the bin. Close to one in four people said they would ignore it altogether consequently leaving others in danger of needle stick injuries. The survey also showed people have little understanding of harm reduction services, such as Australia’s world-leading Needle and Syringe Program. One third of respondents believed Needle and Syringe Programs encouraged drug use. An overwhelming 20% of people thought Needle and Syringe Programs dispensed drugs and a further 40% were unsure. These programs decrease drug use and provide access to sterile equipment and referrals to treatment. They do not dispense drugs.

Australia is leading the world in harm reduction. We have one of the lowest rates of HIV infections despite having a high number of injecting drug users, as acknowledged in the UN 2009 World Drug Report. The prevention of a massive HIV epidemic here was attributed to Australia’s quick response to the virus by conceiving and implementing the extremely effective Needle and Syringe Programs. • John Ryan is CEO of Anex. Abridged from an Anex press release (27 Sept 2009).

Image © by oobrien, via www.flickr.com

“These programs are in place to protect users and the wider community. Needle and Syringe Programs alone have already prevented thousands of Australians from contracting HIV and hep C resulting in savings of up to $7 billion in avoided healthcare costs. But the future of these programs is under threat due to lack of support and community understanding,” concluded Ryan.

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Social determinants of he This article by Richard Wilkinson and Michael Marmot introduces Social determinants of health: the solid facts, a discussion paper from the World Health Organization.

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

4. 5. 6. 7. 8. 9. 10.

Social Determinants of Health: The Solid Facts is a booklet that outlines the most important parts of this new knowledge. The ten topics covered are: 1. the social gradient 2. stress 3. early childhood

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

social exclusion working conditions unemployment social support drug dependence food transport

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

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

Drug dependence Individuals turn to alcohol, drugs and tobacco and suffer from their use, but use is influenced by the wider social setting.

What is known Drug use is both a response to social breakdown and an important factor in worsening the resulting inequalities in health. It offers users a mirage of escape from adversity and stress, but often makes their problems worse. Alcohol dependence, illicit drug use and cigarette smoking are all closely associated with markers of social and economic disadvantage. In some of the transition economies of central and eastern Europe, for example, the past decade has been a time of great social upheaval. Consequently, deaths linked to alcohol use – such as accidents, violence, poisoning, injury and suicide – have risen sharply. Alcohol dependence is associated with violent death in other countries too. 28

www.hepc.org.au

The causal pathway probably runs both ways. People turn to alcohol to numb the pain of harsh economic and social conditions, and alcohol dependence leads to downward social mobility. The irony is that, apart from a temporary release from reality, alcohol intensifies the factors that led to its use in the first place. The same is true of tobacco. Social deprivation – whether measured by poor housing, low income, lone parenthood, unemployment or homelessness – is associated with high rates of smoking and very low rates of quitting. Smoking is a major drain on poor people’s incomes and a huge cause of ill health and premature death. But nicotine offers no real relief from stress or improvement in mood. The use of alcohol, tobacco and illicit drugs is fostered by aggressive marketing and promotion by major multinational companies and by organised crime. Their activities are a major barrier to policy initiatives to reduce use among

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ealth: drug dependence and appreciated. We need more social interaction within society. We need friends and the feeling of being useful. And we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.

Image © by Ryan Christopher VanWilliams - NYC, via www.flickr.com

By tackling some of the material and social injustices, social policy will not only improve health and wellbeing, but may also reduce a range of other social problems that are associated with ill health and are rooted in some of the same socioeconomic processes. • In ED61, we began our coverage of Social Determinants of Health. Over the following editions of The Hep C Review, we are featuring the remaining topics (far left) that underpin this social viewpoint. Ed.

young people; and their connivance with smuggling, especially in the case of tobacco, has hampered efforts by governments to use price mechanisms to limit consumption.

Policy implications • Work to deal with problems of both legal and illicit drug use needs not only to support and treat people who have developed dependant patterns of use, but also to address the patterns of social deprivation in which the problems are rooted. • Policies need to regulate availability through pricing and licensing, and to inform people about less harmful forms of use, to use health education to reduce recruitment of young people and to provide effective treatment services for people dependent on drugs.

responsibility on to the user is clearly an inadequate response. This blames the individual rather than addressing the complexities of the social circumstances that generate drug use. Effective drug policy must therefore be supported by the broad framework of social and economic policy. In the next edition of The Hep C Review we will cover access to food. • Abridged from Social determinants of health: The solid facts (second edition), World Health Organization, 2003. The full booklet can be downloaded from http://www.euro.who.int/ document/e81384.pdf

• None of these will succeed if the social factors that breed drug use are left unchanged. Trying to shift the whole The Hep C Review

Edition 67

December 2009

www.hepc.org.au

The Hep C Review

Edition 67

December 2009

my story

Leonie’s story: walking I am a practising artist with personal experience of living with hep C and undergoing treatment to clear the virus. When a call went out for activities to publicise Hepatitis Awareness Week, I felt that an art project would have been a great vehicle to get the hepatitis awareness message out there. The theme for this year’s awareness week was: One in 12 people worldwide have hepatitis. My aim was to bring together artists from a variety of backgrounds to produce ephemeral street artwork in chalk, referencing hepatitis issues, on the footpaths of Lismore. Street art has become a contentious issue in contemporary society – some call it vandalism, some call it art. By utilising a medium such as chalk, that just washes away, I hoped we could make “graffiti style” art that would draw a lot of attention to our project.

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Lismore, located in northern NSW, is a city encompassing many marginalised groups. This region has one of the largest populations of people affected by hep C in Australia. It is also the location of a liver clinic for people undergoing treatment for hep C.

Hepatitis Awareness Week coincided with major flooding in northern NSW. Chalk and water don’t mix. The dates scheduled for our project kept shifting with the weather. We kept rescheduling, hoping the rain would clear. Unfortunately the shifting dates meant many of the original artists booked could no longer participate. This required constantly updating the artists with a barrage of phone calls and emails booking, rebooking and sourcing new artists willing to participate.

my story

the walk Most of the artists involved were not aware of the issues surrounding hepatitis, and had to research the disease before realising an appropriate piece of artwork. All the artists responded in a uniquely individual way: frightening skeletons, huge syringes and blood cells, 12 dancing women, text and a personal response to living with the disease. The wonderful workers from the Lismore Liver Clinic provided invaluable support in the form of a public education and information stall providing lots of printed handouts and facts about the disease.

Many people I spoke to had never heard of hep C and were not aware of transmission risks. The majority of people were supportive and interested. Many people thanked me for the information; a majority of the comments were “I didn’t know the risks, I’ll be more careful in future”. Art has the ability to connect and communicate. This was magnificently illustrated by the success of this project. •

Leonie, NSW.

The Hep C Review

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December 2009

Main image © by faster panda kill kill, via www.flickr.com (Image, top, provided by Leonie)

I stencilled the Hepatitis Awareness Week slogan: “am I number 12?” up and down the footpath. This question engaged many people; they wanted to know if they were number 12! The artwork provided a strong visual attraction, with most members of the passing public asking what we were doing and what the art was about. This opened the way for the artists involved to engage in a dialogue with the public about hepatitis issues and the opportunity to direct them to the information stall.

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Hep C: a captive of the Hep C poses critical challenges to the way NSW prisons operate, reports Kirsty D’Souza, writing for

eing in prison is – just by itself – a risk factor for hep C. When someone begins a custodial sentence, his or her risk of contracting the virus soars. Studies show that about one in three men in prison and more than half of all female prisoners are hep C antibody positive. In the general population about one in one hundred people has the virus. While the estimated rates of new infections in the general community have dropped since the 1999-2000 heroin drought, there seems to have been little change to the high rates of infection in our prisons.

The epidemic of hep C amongst inmates is a problem for everyone. Prisons have been described as “reservoirs of infection” in the community. Inmates are immersed briefly in this reservoir – most serve sentences of less than six months – and then are released into the community at the rate of up to 10,000 people each year. Without education, support and treatment while in prison, when prisoners are released, there is a risk they may be unaware they have the virus, or unsure how to treat it or manage it safely. Epidemiologists have been saying for some time that we won’t get control of hep C in the community until we get control of it in our prisons.

www.hepc.org.au

The prison environment could have been designed for nurturing blood-borne viruses like hep C. Many inmates are or have been injecting drug users. In a 2004 survey 59% of prison entrants reported a history of injecting drugs and about half of drug users are thought to continue using while in prison despite the risks and difficulties involved. Although the virus can only be contracted from contact with the blood of an infected person, there are a multitude of ways this can happen in prison. They include: • sharing injecting equipment of any sort (not just needles) – particularly if it hasn’t been disinfected. • tattooing and body piercing done without sterilised equipment • sharing personal grooming items such as razors, toothbrushes and metal combs • through injuries as a result of fights or from contact with blood-spills after an altercation • from self-harming or “slashing up” using a contaminated blade or something similar.

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e NSW prison system The Hep C Review.

• prevention of transmission – including methadone and other drug treatment programs to discourage prisoners from injecting drugs, as well as providing information about the virus and how it can be transmitted • screening for blood-borne viruses • clinical care of prisoners with hep C including those not being treated, those undergoing treatment and those with liver disease • training and developing a workforce equipped to deal with all areas of hep C management • research and monitoring. Justice Health is currently reviewing these strategies to assess how well they’re working.

Meanwhile, the good news is that the work done so far means the potential for screening and treatment of hep C in NSW prisons is steadily improving. There was a time when only Long Bay had facilities to offer treatment. Now every NSW prison has a clinic capable of organising hep C testing, and eight centres can provide treatment through visiting doctors. At other centres prisoners wanting hep C treatment are sent to Long Bay to start off, then they return to their gaol of classification for the duration of treatment. Justice Health is trialling a new model of nurse-led care which it’s hoped will mean better access for more prisoners. Every person coming into prison has a reception health assessment where screening for the virus is recommended. New prisoners will also be told about ways of staying safe from blood-borne viruses while inside. Initial screening for hep C is voluntary and, at any time during their sentence, prisoners can arrange an appointment and talk to a Public/Sexual Health Nurse (PSHN) about screening and potential treatment. The nurse, who will have had special training in hep C care, will discuss the pros and cons of testing and help to explain what test results mean. Everything discussed is confidential so it won’t be revealed to other prisoners or to staff.

The Hep C Review

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December 2009

Image © by Ryan Dingman, via www.flickr.com

It’s clear that health services in prisons have a unique role to play in breaking the cycle of hep C infection – but it’s a daunting task. In NSW, Justice Health is the body which looks after the physical and mental health of prisoners while the Department of Corrective Services is responsible for custodial management. In 2007, Justice Health launched a three year plan to tackle hep C in prisons. The plan covers:

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Prisoners can also phone the Prisons Hep C Helpline using the phone system in their prison. The call and the information provided are free of charge. One of the main barriers to undergoing hep C treatment in prison is simply timing. Since most prisoners serve less than six months and it takes a number of weeks for appointments and testing to go ahead, by the time possible treatment is being discussed, a prisoner can be close to release. It may not be worthwhile embarking on a regime that will last 24 or 48 weeks. Short duration therapy for hep C is being studied at the moment and, if it proves effective, could make it considerably easier to treat people during a custodial sentence. Another barrier to treatment is the movement of prisoners between jails. Few people serve their entire sentence in one place which can make it difficult for an inmate, who wants support with hep C, to get any continuity of care. Prisoners in jails where treatment can’t be provided on site may be reluctant to embark on treatment if it means moving to another facility, usually Long Bay. Justice Health also offers help to prisoners who are leaving the system so that they can continue treatment outside or get access to treatment if they haven’t started. The discharge service will link people with appropriate services and even make appointments for them. Unfortunately the up-take is low and many prisoners discontinue treatment, or lose interest in starting it, once they’re released. Prison can be a good environment for some people to undergo drug therapy for hep C, particularly if their life outside prison tends to be chaotic. Treatment is available close-by, there’s no organising to be done, no juggling a job with treatment, no travelling during times of fatigue, sickness or other side effects plus there’s always medical staff on hand for support. There may also be informal support or mentoring from prisoners who’ve had experience of treatment. For other people, treatment is best left until they’re at home with family and friends around them to offer support.

www.hepc.org.au

Justice Health says that any prisoner who thinks they may have been exposed to any of the risks listed above should begin the process of getting testing and potential treatment as soon as possible; the earlier in their sentence the better. Although hep C treatment in prisons has improved enormously, there are many who say it’s not enough and it never will be. They believe the only way to reduce the level of hep C is to make it easier for inmates to avoid infection in the first place. Various groups continue to pressure governments to trial Needle and Syringe Programs in Australian prisons. At the Australian Drugs Conference in October, delegates voted almost unanimously for such a trial to go ahead. Some jails in other countries, including Switzerland, Spain and Germany, are already supplying prisoners with sterile injecting equipment in an effort to contain the spread of hep C and HIV, and NSPs have been highly successful outside prisons in reducing the number of infections and thus saving lives. Because it’s relatively difficult to smuggle drug injecting equipment into prison, any that does get in tends to be passed around amongst inmates. One ex-prisoner at the conference said it wasn’t uncommon to have one needle circulating almost the whole prison. However, correctional services in Australia believe there should be a total ban on illicit drugs in prisons and efforts and resources should be concentrated on helping prisoners to stop using drugs altogether, rather than making drug use safer. Many people would also like to see sterile equipment made available for tattooing and body piercing. Meanwhile the message for current inmates of NSW prisons seems to be this: prison is a high-risk environment so minimise your risk of contracting hep C as much as possible. If you think you may have been infected, make the most of the services on offer to get information, support, testing and possibly treatment. • Kirsty D’Souza is a freelance health writer. (kirstieds@hotmail.com)

Image © by Ryan Dingman, via www.flickr.com

For many inmates who are seeking information about hep C, it’s vital to have someone who is prepared to sit down and talk with them in straightforward terms. Prisoners who’ve spent time in the current system say any inmate who’s unsure about how the system works, or who’s reluctant to access it, should try to get help from someone who has more experience of how things work in that jail.

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HELLO HEP C HELPLINE “Hi there. My husband started having treatment for hep C a few weeks ago. I thought the side-effects would only affect him and his health, but the whole family’s stressed. He’s been irritable and feeling down since he started. He obviously feels unwell but he won’t talk about it. What can I do?” Supporting or caring for someone with hep C can be really tough, especially if they’re on treatment. Sometimes people need quite a lot of support, and it can be hard to know what your role is as a friend or family member. Getting informed and showing that you care are excellent ways to start. Even though it’s difficult, try not to take that irritability personally. Remember that the treatment your partner is taking is a combination of very strong drugs, and it can have all sorts of effects. There are lots of effects he can’t control, and he probably wishes they weren’t there too. People do sometimes experience depression, mood swings and anxiety as a result of hep C treatment, and it’s important that they mention that to their doctor. There are ways to manage those side effects; they’re quite common and mental health problems are nothing to be ashamed of.

It’s also important to offer your husband support on his terms. Treatment and management of hep C involve very personal decisions and experiences, but for someone on treatment it can be really valuable just to know that other people are there for support if they want it. Some people find it useful to have someone come along to appointments to write things down or ask questions. Other people might want help with practical things around the house, and might not feel comfortable talking about their feelings. In any case let the person who’s having treatment direct the process: if help is forced upon someone, it doesn’t look much like help anymore. As well as all these things, it’s vital that you look after yourself too. Accept your feelings and talk about them, take breaks and ask for help when you need it. Recognise your limits; there are some things you might not understand if you haven’t had hep C, and you can encourage the person to go to a support group or use a peer support service like Hep Connect for those things. Find time to do the things you enjoy and don’t forget to laugh, because if you’re not looking after yourself then you can’t look after anyone else. •

Hep C Helpline.

If your partner is experiencing depression, it might make you feel frightened and helpless. It can be hard to know how to react, but try to keep your expectations of him to a minimum, and definitely don’t expect him to snap out of it. Treatment-related depression is often caused by physical factors, and all the willpower in the world won’t make it go away. Don’t ignore remarks about self-harm if they happen; get help as soon as you can.

‘Hello Hep C Helpline’ is brought to you by the Hep C Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity. FERRAL. INFO. SUPPORT. RE L TIA EN ID CONF

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All you need 2 do is

Don’t cuff yourself

elcome to the first instalment of All you need 2 do is ask. This is a new initiative for people who have a connection with the criminal justice system in some way. It is not just for people in corrections but anyone who has been affected by hep C and the criminal justice system. All you need 2 do is ask provides you with answers to questions you may have on treatment inside NSW prisons, infection rates, risk factors, services and support, information, literature and updates. It is written by me, Robert (Bob) Barco, an ex-inmate who served almost 17 years before being released. I now do volunteer work for the Hepatitis C Council NSW. I got a degree in social welfare and served as a health promotion peer mentor inside NSW correctional centres for many years and have been a member of the Council for nine years. While in prison I also served as secretary for the Inmate Development and Aboriginal Inmate Development committees. In our first article we are looking at: • What is hep C? • Being tested for hep C • Hep C treatment for NSW prison inmates • Support for prisoners • Support for families • Barriers. 38

www.hepc.org.au

What is hep C? Hep C is an infectious disease affecting the liver, caused by the hepatitis C virus (HCV). The infection is often asymptomatic, but once established, chronic infection can progress to liver inflammation (fibrosis), and advanced scarring (cirrhosis) after many years. The hep C virus is spread by blood-to-blood contact. Most people have few, if any symptoms soon after the initial infection, yet the virus persists in the liver in about 75% of those infected. Being tested for hep C A quick look at the pros and cons shows why it is important to be tested. If you feel you have been at risk, it’s important to be tested, so don’t put it off. Firstly knowing whether you’re HCV+ or HCV- empowers you, it gives you information from which you can make a choice. Knowing means you can lessen the chances of accidently infecting others and you can make an informed choice about treatment. Not knowing means you can unknowingly infect others and your longterm health can suffer. A simple blood test can make a difference and put your mind at ease. To be tested simply put your name down at the clinic to see the public health nurse, or if you’re in a country prison, just ask the nurse to put you down for blood tests.

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ask Support for families

Hep C treatment for NSW prison inmates Chronic hep C can be treated with combination treatment; weekly peg-interferon injections and daily ribavirin pills. Between 50-80% of people are cured, depending on your genotype. Combination therapy is available to NSW prisoners depending on your suitability for treatment. All centres can do hep C testing and eight centres have visiting treatment doctors. Prisoners at other centres can go to Long Bay to start off treatment then go back to their centre to continue and finish their treatment. The first thing to do is to have an HCV test. If it is positive, then a PCR test will be required. Current treatment lasts for a period of 24 or 48 weeks, depending on your hep C genotype (sub-type). Support for prisoners The treatment may be physically demanding but support is available through the Justice Health staff at your centre. Most centres have inmate mentors, peer support workers and inmate development committee delegates who can help you to access the Prisons Hep C Helpline. If you have questions ring the Helpline. Access the jail phone and dial in your MIN number and then your PIN, followed by the number 2 button and then the number 3 button. Deciding on treatment is not an easy choice to make. Justice Health community health nurses are there to support you in making this choice. The Prisons Hep C Helpline will also assist by providing you with up to date relevant information, support and advice.

The NSW Hep C Helpline is a state-wide telephone information and support service for people affected by hep C. It is a free, confidential and non-judgmental service and callers are offered: • Up to date, accurate information about hep C • A supportive environment to talk over their experiences and any particular issues • Referral details to appropriate services • Individual advocacy • A detailed, posted, free information package on hep C. Family members who have concerns about their loved ones can contact the help line on 9332 1599 (Sydney) and 1800 803 990 (regional NSW). You can also log onto www.hepc.org.au and access a range of support services via the Hep C Council’s website. Barriers Accessing hep C treatment in NSW Corrections is not as easy as it sometimes sounds. There are many barriers to accessing services such as lock-ins, short staffing, industrial action and union meetings. Sometimes it can take months just to see the doctor and weeks to get a blood test. It is during these times that you need the most support. The Prisons Hep C Helpline is only a free phone call away and the Hep C Council NSW is here to support you. There are many dedicated caring staff with Justice Health who can also help. All you need 2 do is ask, means what it says. I’m here to answer your questions and find answers for you. I have direct experience inside NSW prisons and I trust The Hep C Review and all the expert workers dealing with hep C and prisons. So remember we’re here for you. If you have any questions, write to us at All you need 2 do is ask at PO BOX 432, Darlinghurst NSW 1300. • Robert (Bob) Barco writes for The Hep C Review.

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December 2009

Image, above left, provided for All you need 2 do is ask, by Long Bay MSPC inmate.

Remember, having a test is strictly confidential. No-one will know why you’re having a blood test and no-one will know the results of those tests except you and the community health nurse who gives you the results and then explains them to you. Justice Health maintains confidentiality, as does the Hep C Council.

my story

Ian’s story: raising awareness on the

would like to share this story with the readers of The Hep C Review and ask for feedback in relation to heps A, B & C. I am currently on remand at the Junee Correctional Centre, NSW, and there is a lot of talk and always continuous disagreements on the ways these viruses can and cannot be contracted. Although your magazine is available to prisoners in the system, a lot of inmates do not know how to get a hold of it. It is mostly kept in the education block or medical clinics inside the prison and unless inmates go to these sections of the prison, they have no access to it. I have hep C but still have a very limited understanding of it, or A and B, even though I sometimes read the Review. I have had injections in the past for hep B but still don’t know if I can catch it. I find everyone I talk to about this subject has a different opinion or little knowledge and there is always disagreement. I have injected drugs for many years and came into contact with hep C in 1994 after sharing injecting equipment. I still know very little about available treatments as it is difficult to access any information in the prison system. My GP on the outside tells me I

have to go for tests to see if I have the right strain to actually be able to receive the treatment. I do have some friends in the community who have had the treatment, but they say it is not very comfortable going through every day waking up like you have been hit by a truck. I have discovered that not a lot of people with the virus like to talk about it and I figure this to be because of shame. The shame due to lack of information and understanding and fear of ridicule by your peers. I have noticed over time that, because so many people in the wider community have little or no knowledge of these viruses and don’t have it themselves, they look down on those that do. Some even go as far as putting people down thinking that they may catch this disease if they touch anything someone with the virus has touched beforehand. I was guilty of this myself. In 1980, hep C hadn’t been identified and was called “non-A non-B hepatitis”. Back then, I learned that my sister had got it via a blood transfusion and I had my fears of getting it from her. I was very careful not to use anything she had touched beforehand and even kept my distance. This was because I was led to believe it was a certain death sentence to have this virus and for many years I remained ignorant.

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Image © by fanfan2145, via www.flickr.com

My sister has had the virus now for almost 30 years, and although she has some complications due to excess alcohol, she is still here with us.

inside

The little book of hep B facts

I believe now that there should be more education on this subject, especially in the prison system where a big percentage of prisoners have hep C. The Hep C Review should be made more readily available to inmates along with other information so inmates would have a better understanding of the disease and more people would then seek the proper advice on treatments available to them. They will be less afraid to talk to others about their hep C. I was one of them because my shame and fear made me feel like I was contagious. When I first discovered I had the virus, I kept it to myself as I had witnessed people’s attitudes towards others that had the virus and I didn’t wish to feel alienated and ridiculed. Still today, when I tell some people I have the virus, I see the change in their attitude towards me because they know little about it. I became depressed and even thought of suicide rather than seeking advice and help from anyone. Still, it is like that now for some people; it is a life change for the worse. I hear people in prison discussing the ways you can get hepatitis viruses and most of them have no idea and strike fear into people and make it all the more difficult for someone who has the virus to seek any kind of help. The Hep C Council and the Prisons Hep C Helpline have all the information needed, but it needs to be made easier to access them in prison, and in a way that people do not have to worry, e.g. someone might see them pick up The Hep C Review and then make that person feel ashamed. Anyone with the virus should not have to fear being found out and left feeling alone. I would really appreciate it if you would publish my story and if readers could give any feedback and suggestions on what needs to happen so that all inmates in all prisons can get a better understanding of the hepatitis viruses and need not fear detection or be at risk of catching them. •

Ian, NSW.

Thanks for your story and thoughts, Ian. Yes, we’d hope that other people will write in on this subject. We’ll report back in next edition’s Council Keyhole what the Council’s doing at this end. Ed.

Digitally altered stock photo via www.images.google.com.au

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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. • Transmission from mother to baby can be prevented by vaccination and injection of immunoglobulin soon after birth. • Breastfeeding is not associated with hep B transmission. • There is a safe and effective vaccination for hep B. It is recommended for everyone, especially where people are exposed to blood or body fluids. • You can get hep B vaccination from your GP, sexual health clinic and some local councils. • The hep B vaccine is the world’s first anti-cancer vaccine as it helps prevent hep B related liver cancer. • The long term result of hep B infection depends on the person’s age at the time of infection. • Over 90% of adults who are infected with hep B recover and are immune for life. See our previous and following editions of The Hep C Review for all 38 hep B facts – or check out the booklet at www. hepccouncilsa.asn.au/resources/downloads/ category/15-resources

The Hep C Review

Edition 67

December 2009

opinion

George Shultz on the US drug war The former secretary of state has long doubted the wisdom of drug prohibition, writes Mary O’Grady in The Wall Street Journal.

Image © courtesy of www.usdiplomacy.org

eorge Shultz took office as Ronald Reagan’s secretary of state in 1982. Mr Shultz, now a co-chair of the North American Forum which pulls together members of the business and government community, which is paying a lot of attention to the problem of drugtrafficking violence on the Mexican border. “It’s got to the point that... you’ve got to be worried about what’s happening to Mexico, and you’ve got to realize that the money that’s financing all that comes from the United States in terms of the profits from the illegal drugs. It’s not healthy for us, let alone Mexico, to have this violence taking place.” Mr Shultz carries weight on this issue, in part because he has been thinking about it critically for decades. He has long harboured scepticism about interdiction (prohibition) as a solution to drug abuse in the US. In 1988, Mr Shultz recalls, he travelled to Mexico for the inauguration of President Carlos Salinas. After the ceremony they had a private conversation. “He said to me that he understood it was important for Mexico to do what it could to stop the flow of drugs into the United States. But he wanted me to know that the funds to support all that traffic came from the United States to Mexico.” Mr Shultz says that around the same time he heard a very similar refrain from the president of Colombia, Virgilio Barco. In recent years, Mr Shultz says, “There has come to be more and more of a realization of the nature of the problem. I thought it was interesting six or eight months ago, that three former presidents of Latin American countries, President Zedillo from Mexico, President Cardoso from Brazil and President Gaviria from Colombia made a report basically saying that we have to look at this problem in all of its dimensions if we are going to get anywhere with it. And we have to realize what its origins are.” Mr Shultz is a strong proponent of education to reduce demand. “If we want to get serious about this issue, we should start with a gigantic campaign to persuade people that drugs are bad for them. And it has to be based on solid factual material. You can’t try to mislead people.”

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Yet that’s been difficult because of the taboo. Mr Shultz recalls what happened shortly after he left government, when his view that interdiction is not the solution generated questions after a speech to a Stanford alumni group. Then, as now, he believed that we need to look at the problem from an economic perspective and understand what happens when there is high demand for a prohibited substance. When his comment hit the press, he says he “was inundated with letters. Ninety-eight percent of them agreed with me and over half of those people said I’m glad you said it, but I wouldn’t dare say it. The most poignant comment was from a former member of the House of Representatives who wrote and said I was glad to see your statement. I said that a few years ago and that’s why I’m no longer a congressman!” I asked Mr Shultz if he thinks a more sensible approach might come from the states. He says “people can express themselves a little better at the state level.” And, with respect to some liberalization of the drug-possession laws at the state level, “I regard these developments as a distinctive statement by people that the present system is not working very well and they want to change it.” • Abridged from The Wall Street Journal http:// tinyurl.com/yzsfr2d (11 Oct 2009).

Image © by marj k, via www.flickr.com

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Treating hep C in the Hunter Carla Silva provides an update on how hep C treatment is delivered in the Hunter region of NSW.

he John Hunter Hospital viral hepatitis service has been reviewing and treating patients with hep C since 1991. Every two years we conduct a patient satisfaction survey, as we want to find out what our patients think of our service, what they feel we could do better, what their ideas are to improve our service and tell us what we are doing well. The survey also gives our patients an opportunity to provide open and anonymous feedback. Changes to the way we provide our service have come about from past surveys. For example, we have restructured the way we run our treatment clinics to provide improved access to the treating specialists when patients attend their monthly clinic appointment and to streamline the pretreatment assessment process. Patient feedback from previous surveys has also assisted us to improve the information we provide to patients in the initial assessments for treatment. Also, past surveys have helped us lobby for outreach clinics and shared-care arrangements with other services, for example local Drug and Alcohol Clinical services. In March 2009, our 68 patients who were either on dual therapy treatment for hep C or in follow up from treatment were provided with the fourth patient satisfaction survey to be undertaken since 2003. The survey sought to explore our patients’ experiences in a number of areas, such as the time leading up to and during treatment, transport, parking, the actual treatment clinic and staff. Thirty-seven surveys were completed and returned. Most patients surveyed indicated that our clinic, treatment process and staff were meeting their needs and were supportive. They reported that the service provides clear information and good support. Patients commented that they felt the “talk about the side effects and information before treatment was extremely good,” and that “the

staff were very sensitive and respectful and I had absolutely no problems whatsoever.” All of the patients who responded felt that the front line treatment staff were respectful, approachable and polite. Thirty-six respondents felt that they had been given clear information by the staff each time they had contact with them and were happy with the preparation in the lead up to treatment. Our patients indicated that they felt listened to and understood how their treatment was progressing. Patients also provided us with some ideas on how to improve our service, such as “more physical information to take away with me in regards to emotional wellbeing”, “children’s toys in the waiting area”, and “email or text reminders/ support”. Similar to previous surveys, negative responses predominately related to systemic issues with hospital facilities such as the waiting room facilities, waiting times and, as usual, parking facilities at the hospital. Overall, the responses relating to the staff within the hep C multi-disciplinary team, the pretreatment work up and the treatment period indicate a high standard of patient satisfaction and staff professionalism. We hope that this strong satisfaction with the John Hunter hep C treatment service will encourage more people living with hep C to come to us and other public hospitals to discuss their health maintenance and treatment options. We’d also like to take this opportunity to say “thank you” to our patients for their feedback and input into our surveys. They provide us with valuable information on what we are doing well and what we need to do better, and they also provide ideas on how to continue to improve our service to meet their needs. • Carla Silva is Viral Hepatitis Social Worker at the Viral Hepatitis Service, John Hunter Hospital, NSW.

The Hep C Review

Edition 67

December 2009

Council keyhole promotions Council keyhole, “The Council’s view on scare tactics in health promotion”, continued from page 2. But while there is plenty of community and political and some health sector ignorance about hep C, there is arguably very little fear that it will cause untimely death or cause society to collapse. GIVEN: We know what initiatives would prevent HCV transmission but we also know that considerable well known barriers work continue to against them. QUESTION: Would scare tactics work? Messages warning people who inject drugs that if they get someone else’s blood into their bloodstream then they are likely to get a disease that might cause serious liver disease and may cause death, in 5% of cases, 45 years down the track? ANSWER: We suggest not. We note that the antitobacco health promotion campaign to reduce the incidence and prevalence of cigarette smoking has several components, all of which have contributed to its relative success. That’s why that one’s worked. The shock tactics of the adverts are but one part. GIVEN: Generally, we know what needs to be done to increase awareness of treatment and to increase awareness of the need for treatment. QUESTION: Could scare tactics be used in health promotion messages to try to encourage people to seek treatment in order to help prevent progression to severe liver disease such as cirrhosis, liver cancer or end stage liver failure. Should pictures of cirrhotic livers and horribly swollen ankles and extended guts be shown in posters and in community service announcements – warning people with hep C that this is what we face if we don’t seek treatment now? ANSWER: We suggest not. There are too many other barriers to treatment and too many examples of positive health in a large proportion of people with long term hep C to enable such a campaign to be an honest one.

It is our view that: 1. Prior to any scare tactics being considered, relevant and applicable published (in peer reviewed literature) research examining the use of scare tactics in a range of health related social marketing campaigns be examined and considered; 2. We should work with and listen to what Aboriginal communities and leaders are saying, and work with them to design appropriate messages and campaigns; 3. Any social marketing campaign (using scare tactics or not) should have full and effective focus testing with the correct sample size of the relevant target group; 4. Any social marketing campaign must specifically aim for, and have the effect of, not marginalising the population groups whose behaviours are being targeted in the campaign; 5. Truthful and honest and non-sensationalist information and easy calls to action must be used in hepatitis social marketing campaigns.

•

HCCNSW

HALC

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

HALC is a community legal centre providing free advocacy and advice. Our solicitors understand the needs of people living with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and Health Care Complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. We understand the importance of confidentiality and practise discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.

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membership matters You are vital to us — we are here for You Membership renewals for 2010 Sunshine, blue skies and barbecues ... it must be Summer! The “silly season” is here again, but you won’t be silly if you take advantage of our annual Early Bird membership promotion: Members renewing for 2010 before the 1 March due date will go into the Early Bird prize draw; up for grabs are a 2010 organisational fee refund and tasty rewards for two individual members. For quick, easy and secure renewal payment, visit the membership page of our website www.hepc.org.au or use one of those other time-honoured methods – mail or fax – to submit your renewal. Cheques and money orders are very welcome. We will send invoices to all organisational and professional category members in January. Please quote your invoice number for accurate payment allocation. Remember, in order to remain a financial member, all members, including those people who choose the zero-fee option, need to renew their membership. This is a constitutional requirement. In addition to the electronic payment option, you’ll find a membership renewal form on the back cover of this magazine.

In your December edition of Member News, watch out for: • Feedback from our AGM and Audrey Lamb Community Forum • Sponsored member perspective on the National Hepatitis Health Promotion Conference in Hobart • Results of Membership AGM survey

HEPATITIS C: AN EXPANDING PERSPECTIVE We have limited copies of this latest publication on hep C for a special discounted price of $68 + postage. This book is essential reading for all practitioners with an interest in hepatitis C, from medicine, nursing, public health, public policy, the BBV and drug and alcohol fields, and for undergraduate and graduatelevel students in these fields. It’s particularly useful for people affected by hepatitis C who would like to gain an in-depth knowledge of the condition. Hepatitis NSW can offer this discount price to our currently financial members. Your membership bulletin, Member News, contains further details of this special offer.

A historical perspective

representatives of existing support groups and other interested people to meet and talk about how our national body can best operate. (Abridged) roles of national body:

Taken from Edition 7, December 1993.

Report on the national HCV support group conference As is clear from these newsletters a very active and efficient national body already exists; the Australian Hepatitis C Support Group. The group’s existence is due to the dedication of a small number of individuals who have put enormous amounts of unpaid time and energy into establishing and maintaining the Group. However, as with all initiatives that are established quickly out of an urgent need, the time comes for clarifying, streamlining and forward planning. The Hepatitis C Symposium held in Melbourne on 8 October 1993 was used as an opportunity for

• Support state groups in their activities • Facilitate communication between state groups • Coordinate national strategies, media activities, lobbying and research promotion • Secure and diseminate federal funding to state groups The outcome has been increased respect for many other members, an appreciation of their strengths and the formation of a truly collaborative working relationship between people across Australia whose primary aim is to further the needs of the hepatitis C infected and affected communities. • By Ali Marsh, President, W.A. Hepatitis C Support Group.

The Hep C Review

Edition 67

December 2009

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

Edition 67

December 2009

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 • taking them to your local library • taking them to your local community centre. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hep C Helpline (on 1800 803 990). • HCCNSW

Hepatitis C is not classified as a sexually transmitted disease The virus is transmitted when infected blood from one person gets into the bloodstream of someone else For more information about how hep C is transmitted, visit www.hepatitisc.org.au 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 transmitted when infected blood from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker does not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit

www.hepatitisc.org.au

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Hepatitis C is hard to catch. It is not transmitted by touching someone who has it or drinking out of the same cup or using the same knives and forks. It is transmitted when infected blood from one person gets into the bloodstream of someone else. For more information about hepatitis C visit www.hepatitisc.org.au or call the Hep C Helpline (see over)

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research updates Keeping hep C virus at bay after a liver transplant

The lived experience of hep C among people who inject drugs

Japan – One of the most common reasons for needing a liver transplant is liver failure or liver cancer caused by liver cell infection with hep C virus (HCV). However, in nearly all patients the new liver becomes infected with HCV almost immediately. But now, Hideki Ohdan, Kazuaki Chayama, and colleagues, at Hiroshima University, Japan, have developed an approach that transiently keeps HCV levels down in most treated HCV-infected patients receiving a new liver.

Australia/UK – Hepatitis C virus infection is a stigmatised condition because of its close association with injecting drug use. There is a need to explore how people who inject drugs (IDUs) perceive hep C, including in relation to treatment experience.

Specifically, the team took immune cells known as lymphocytes from the donor livers before they were transplanted into the HCV-infected patients, activated them in vitro, and then injected them into the patients three days after they had received their liver transplants. Importantly, these infused cells were able to keep the HCV at bay even though the patients were taking immunosuppressive drugs to prevent their immune systems from rejecting the new livers. Despite showing clear clinical effects, the authors are planning further studies in which they will modify the protocol in an attempt to find a way to keep HCV levels down for longer and in all patients. • Adoptive immunotherapy with liver allograftderived lymphocytes induces anti-HCV activity after liver transplantation in humans and humanized mice. Ohira M, et al. J Clin Invest doi:10.1172/JCI38374. Abridged from http://tinyurl.com/yzmr4yf

We undertook a review, using a qualitative synthesis approach, of English-language qualitative research focusing on the lived experience of hep C among IDUs. The review included 25 published articles representing 20 unique studies. A synthesis of this literature generated three interplaying themes: social stigma, biographical adaptation, and medical and treatment encounters. Interactions with health systems can reproduce stigma linked to drug injecting and hep C, as well as trivialise the lived experience of diagnosis and illness. Hep C can be biographically reinforcing of socially accommodated risk and spoiled identity, as well as disruptive to everyday life. We hypothesize hep C as an illness experience, oscillating between trivial and serious, normalized and stigmatized, public and personal. • Abridged from the abstract of The lived experience of hepatitis C and its treatment among injecting drug users: qualitative synthesis. Treloar C, Rhodes T. Qual Health Res 2009; 19; 1321-1334.

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. They help broaden our overall knowledge and develop consensus opinion on a particular research topic. 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 NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers).

The Hep C Review

Edition 67

December 2009

research updates Hep B and C in NSW children Australia – This study aimed to characterise epidemiological, clinical and laboratory features of children in New South Wales with chronic hep B (HBV) or hep C (HCV) infections. It involved a review of epidemiological, clinical, laboratory, liver biopsy and treatment data for children in NSW with chronic HBV or HCV referred to specialist clinics during 2000–2007; and comparison with NSW Health notification data for the same period. Seventy-nine children with chronic HBV and 29 with HCV infection were referred to specialist clinics, while 930 children with HBV and 777 with HCV infection were reported to NSW Health. Most of the referred children with HBV were born overseas, while most with HCV were born in Australia to mothers with a history of injecting drug use. Of the 79 HBVinfected children, 56 were e-antigen positive. Most HCV-infected children (23/29) had alanine aminotransferase levels = 2 times the upper limit of normal, and more than half of those who had genotype determined had type 2 or 3. Fibrosis was evident in liver biopsies performed for both HBV and HCV. Although advanced liver disease was uncommon in children referred with HBV or HCV infection, a large number of infected children in NSW were not referred for specialist medical care, indicating that opportunities to intervene early in the natural history of these infections, particularly HCV, are being missed. • Chronic hepatitis B and C infection in children in New South Wales. Nightingale S, et al. MJA 2009; 190(12):670-673. Abridged from http://tinyurl.com/yzsb4py

Hep C treatment in opioid pharmacotherapy treatment services needs closer look Australia – In an effort to increase the number of people undergoing hep C treatment, a range of initiatives are planned or underway to provide treatment in non-specialist services, such as opioid pharmacotherapy treatment (OPT) clinics. This commentary from researchers at the National Centre for HIV Social Research considers the implications of this new approach to treatment delivery, taking account of individual-level issues generally discussed in the literature, such as knowledge of treatment and concerns about side effects. In addition, because less visible organisational and structural factors would equally influence the successful implementation of hepatitis C treatment in OPT services, these are also explored. Provision of hep C treatment in OPT services raises a broad range of pressing questions, from individual knowledge and concern about treatment, to workforce issues, such as discrimination, and tensions between the need for supportive care during hep C treatment and the surveillant, regulatory nature of OPT clinic operations. A thorough critical examination of the structure and delivery of all services involved is necessary. Social research can play a unique role in this assessment because of its ability to generate detailed insight into lived experience and make use of social theories that allow previously invisible operations of power to become visible. The success of hep C treatment in new sectors, such as OPT clinics, is not a given. Close attention needs to be paid to the context and culture in which OPT is delivered. In turn, this needs to be considered alongside the context and culture necessary for successful hep C treatment delivery. • Hepatitis C treatment in pharmacotherapy services: increasing treatment uptake needs a critical view. Treloar C, et al. Drug Alcohol Rev. 2009 Jul;28(4):436-40. Abridged from www.ncbi.nlm.nih.gov/pubmed/19594798

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research updates Hep C among young people who inject drugs: infection, resolution and reinfection

Cases of liver cancer reduced in a younger population vaccinated for hep B

USA – Hep C infection, clearance, and reinfection are best studied in people who inject drugs, who have the highest incidence of HCV and are likely to represent most infections.

Taiwan – A 20-year follow-up study revealed a dramatic drop in liver cancer cases among 6-19-year-olds who were vaccinated for the hep B virus at birth, according to a study published in the Journal of the National Cancer Institute.

A prospective cohort of HCV-negative young injecting drug users (IDUs) was followed up from January 2000 to September 2007, to identify acute and incident HCV and prospectively study infection outcomes. Among 1,191 young IDUs screened, 731 (61.4%) were HCV negative, and 520 (71.1%) of the 731 were enrolled into follow-up. Cumulative HCV incidence was 26.7/100 person-years of observation. Of 135 acute/incident HCV infections, 95 (70.4%) were followed; 20 (21.1%) of the 95 infections cleared. Women had a significantly higher incidence of viral clearance than did men and also showed a faster rate of early HCV viremia decline. The estimated reinfection rate was 24.6/100 personyears of observation. Among seven individuals, multiple episodes of HCV reinfection and reclearance were observed. In this large sample of young IDUs, females show demonstrative differences in their rates of viral clearance and kinetics of early viral decline. Recurring reinfection and re-clearance suggest possible protection against persistent infection. These results should inform HCV clinical care and vaccine development. • Acute hepatitis C virus infection in young adult injection drug users: a prospective study of incident infection, resolution, and reinfection. Page K, et al. Journal of Infectious Diseases. 15 October 2009 V.200 N.8 p.1216-1226. Abridged from http://tinyurl. com/mmkncs

In July 1984, a universal vaccination program was initiated among newborn children in Taiwan to prevent the hep B virus infection, which can predispose to the development of hepatocellular carcinoma, a primary malignancy of the liver. For this study, Dr Mei-Hwei Chang of the Department of Pediatrics, National Taiwan University Hospital in Taipei, and colleagues collected data from almost 2,000 patients with hepatocellular carcinoma who were aged 6-29 years at diagnosis in Taiwan between 1983 and 2004. Age- and sex-specific incidence were compared among vaccinated and non-vaccinated birth cohorts with regression models. Sixty-four cases of hepatocellular carcinoma were found among people vaccinated in almost 38 million person-years vs. 444 cancers among non-vaccinated people in almost 80 million person-years. A few individuals have developed liver cancer despite the program. Analysis of their records shows that most of these patients, however, were not given enough doses of the vaccine, or were insufficiently protected when they were born to hepatitis B-infected mothers, according to the study. “These data suggest that the effectiveness of the universal HBV immunization program to prevent hepatocellular carcinoma has extended beyond childhood and into young adulthood over the past two decades,” the authors write. • Cases of Liver Cancer Reduced in a Younger Population Vaccinated for HBV. Chang M-H, et al. J. Natl. Cancer Inst. 2009 101: 1293. Abridged from http://tinyurl.com/yfltlbm

The Hep C Review

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December 2009

research updates The many faces of hep C: liver Experiences of hep C positive disease and type 2 diabetes clients in AOD clinics Australia – Apart from causing chronic liver injury, hep C infection is associated with extrahepatic disease (outside or other than the liver). Foremost is evidence that infection results in metabolic sequelae (abnormalities in the body’s synthesising of foodstuffs in our production of energy), with the virus interacting with metabolism resulting in hepatic steatosis, insulin resistance (IR), type 2 diabetes, and hypocholesterolemia. Studies have identified the association between chronic hep C (CHC), IR, and type 2 diabetes. The prevalence of diabetes in CHC is between 19%-33%, is specific to hep C compared to other chronic liver diseases, is independent of the severity of liver fibrosis, and its incidence is increased in patients with CHC after liver transplantation. A causative association is further suggested by the knowledge that treatment-induced viral eradication results in improvements in insulin sensitivity. In type 2 diabetes not associated with CHC, impairments in insulin action (insulin resistance) and pancreatic cell failure normally precede diabetes development. In these individuals, the primary sites of insulin action and resistance are muscle and adipose tissue (peripheral compartment) and the liver. With regard to IR in CHC, a number of studies have found reduced insulin sensitivity in non-diabetic subjects with minimal liver fibrosis. The association between CHC and IR is of clinical significance to hepatologists, because IR is a predictor of fibrosis progression and a reduced response to antiviral therapy, irrespective of genotype. Our understanding of IR in CHC has been limited by a number of factors. For example, factors that contribute to IR such as ethnicity, hepatic steatosis, body fat distribution, and family history of type 2 diabetes have not always been assessed. To date, the pathophysiology of IR in CHC is not well defined, and it is unclear if derangement in insulin action are a direct consequence of the virus or if they arise through indirect mechanisms such as lipid accumulation or cytokine secretion. Finally, there has also been some suggestion that IR in CHC may be genotype-specific; the mechanism of any such effect has not been elucidated. • The many faces of hepatitis C: Liver disease and type 2 diabetes. Jacob George, et al. Hepatology 2009 Sep;50(3):668-670. Heavily abridged from http://tinyurl.com/yjd2j4e

www.hepc.org.au

Australia – This study aimed to assess whether HCV-positive clients perceive that alcohol and other drug (AOD) staff discriminate against them. The study compared the treatment experiences of 120 HCV-positive clients with those of 120 HCVnegative clients attending the same AOD treatment facilities. Despite the overall findings of favourable attitudes of HCV-positive clients towards their health care workers (HCWs), these attitudes were less positive than their HCV-negative counterparts. Clients with HCV also rated their interpersonal treatment by their HCWs less favourably. These findings suggest that HCV-positive client’s attitudes towards their HCWs, and their experiences of differential treatment by these HCWs might be a barrier to HCV treatment uptake in AOD treatment facilities. • Abridged from the abstract of Alcohol and other drug treatment experiences of hepatitis C-positive and negative clients: implications for hepatitis C treatment. Brener L, Treloar C. Aust Health Rev 2009:33(1): 100-106.

Hep C treatment among Indigenous people in Victoria Australia – A study was conducted in Victoria that investigated access to hep C treatment services among Indigenous people. It evolved out of concern for the high rate of hep C in the Indigenous population and the low uptake of treatment and care. Through interviews with service providers and Indigenous people, barriers to treatment were revealed, namely the low priority afforded to hep C due to competing comorbidity. Shame and lack of knowledge about hep C among Indigenous people and health care workers, were also identified as major barriers to treatment. Several suggestions and recommendations have been offered for addressing these treatment barriers. • Recognising and responding to hepatitis C in Indigenous communities in Victoria: a research project exploring barriers to hepatitis C treatment. McNally S, Latham R. Australian Research Centre in Sex, Health and Society (2009) http://tinyurl.com/yf85jsc

research updates Lambda gene variant provides Commenting on Lambda clue to treating hep C Australia – The Lambda study is important. It Australia – An Australian-led team of international medical researchers has identified a variant in the human interferon gene IL28B, linking it with the treatment of chronic hep C. Westmead Millennium Institute molecular geneticist, Dr David Booth and the University of Sydney hepatitis C expert, Professor Jacob George, led this important genetic discovery. The international team examined the genomes of more than 800 individuals (including 300 Australians) receiving treatment for chronic HCV. The study published in the Nature Genetics article reports that L28B is involved with suppression of viruses including HCV. “The same principles apply to hep C infection as to MS: we inherit from our parents subtle differences in the make up of our immune system that can make a major difference in susceptibility to disease or how we respond to treatment,” said Dr David Booth, who is also widely recognised for his work with multiple sclerosis and genes that cause autoimmune disease. “Finding each of the few genes that have such an impact gives science an edge in the eventual prevention or control of many of the major diseases of humankind.” “The current study renews interest in therapies which involve this type of interferon, and suggest that combined treatment with interferon-alpha and interferon-lambda may prove a more effective treatment,” said Professor Jacob George, Professor of Hepatology at the University of Sydney. “It also highlights the potential benefits of individualised treatment, including the prediction of which patients are more likely to benefit, sparing others the cost and side effects associated with treatment.” • Abridged from http://tinyurl.com/ygesov6 (14 Sept 2009). For information on this study, contact co-researcher, Dr Vijay Suppiah, on 02 9845 6749.

shows an association between an area on a chromosome and hep C treatment sustained viral response (SVR) rates. Identifying the area on the chromosome is not quite the same as confirming the identity of the gene responsible – that will be the next study. There are however three genes in that region of the chromosome that have a plausible role in response to interferon. All three of these genes are from another interferon family, interferon lambda, as opposed to the interferon alpha we currently use in treatment. The study is stronger because there are two other studies by independent groups which have shown similar things, including one in the same issue of Nature Genetics and one in Nature. The implications are firstly that this could be used to come up with a test to provide additional information about likelihood of SVR. Telling someone with HCV they have a 60% chance of cure compared with 30% will influence how people decide what to do. It may also mean some people with genotype 1 only need 24 weeks of therapy instead of 48. The second implication is that these interferon lambdas will now be studied to determine their effectiveness either alone or with our current PEG. Some of these new interferon lambda agents are about to be used in clinical trials. The third implication is that these findings will improve our understanding of how interferon gets rid of HCV and open up avenues for the development of new therapeutic agents. So expect to see a whole range of new studies about the role of these genes in HCV in the next few years. Exciting days for those of us involved in helping people living with HCV. • Abridged from correspondence between Graeme Macdonald and Hepatitis Council of QLD (15 Sept 2009). For more information about interferon lambda, contact the Hep C Helpline (see page 37). Ed

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interferon-based treatment Interferon-based treatment Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily. Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection (repeatedly antiHCV 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 person). Female partners of men undergoing treatment must not be pregnant. Age: People must be aged 18 years or older. Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hep C 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.

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 peginterferon 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.

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

Complementary medicine

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

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

Alternative access People wanting to access interferon-based therapy outside of the government-subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, contact your nearest treatment centre. For telephone numbers, please call the Hep C 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 Hep C 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. • HCCNSW (above info is reviewed by the Department of Health and Ageing prior to publication).

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

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 hep C? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hep C? • 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

The Hep C Review

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 hep C. Additionally, they should be members of a relevant professional association. Phone the Hep C Helpline (see page 56) for more information and the contact details of relevant professional associations. • HCCNSW To access any of the above mentioned articles, please phone the Hep C Helpline.

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

Hep C Council NSW 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 6–8 pm at the Hepatitis C Council, Level 1, 349 Crown Street (corner of Crown and Albion Streets), Surry Hills. Food and drink provided. For more information please call the Hep C Helpline on 1800 803 990.

Prisons Hep C Helpline A special phone service provided by the NSW Hep C 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 doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The NSW Hep C 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

www.hepc.org.au

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. 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 Although hep C is not classified as a sexually transmissible infection, these clinics offer confidential pre- and post-test discussions and HCV blood tests. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private.

Community health centres Community health and neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community health centres. Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hep C Helpline distributes some information resources in various languages. 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

support and information services 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). 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 10.30â&#x20AC;&#x201C;11 am, (Eastern Standard Time). Go to 3CRâ&#x20AC;&#x2122;s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Coffs Coast hep C support group A self directed peer support group for people living with or receiving treatment or recovering from hep C. For more information please contact Trevor on 0432 141 574 or Mal on 0408 305 833. Coffs Coast family and friends support group A self directed peer support group for the family and friends of those living with or receiving treatment or recovering from hep C. For more information please contact Debbie on 04 1961 9859 or Corinne on 04 2209 0609. 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 information please contact Carla Silva on 4922 3429 or Tracey Jones on 4921 4789.

Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information please contact Vince on 4734 3466.

Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For more information please phone 6620 7539. Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For information please contact Lynelle Wood on 0418 116 749 or Jana Vanderjaght on 0418 207 939. Parramatta support group A support group for people living with hep C, including those in treatment. From 7 pm to 8.30 pm, 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 information please contact Susan on 9845 5627. Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. It offers free and confidential services to affected people and their families and carers. For more information contact Traids 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 information please contact Susan on 9845 5627.

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

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December 2009

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.

National Centre HIV Social Research: 11th Social Research Conference on HIV, Hepatitis C and Related Diseases, 8-9 April 2010, Sydney.

People seeking more information about donating their liver should contact Lifegift, the NSW/ACT network that coordinates organ donation.

Australasian Society for HIM Medicine: 2010 Australasian Conference on Viral Hepatitis, 6-8 Sept 2010, Melbourne.

Complaints If you wish to make a complaint about our products or services, please visit our website for more information: www.hepc.org.au/aboutus/complaints-and-disputes-handling.

Please phone 02 9229 4003.

Or see page 3 for our phone number and postal address.

Want to help your Council?

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We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. 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 C Review and Transmission Magazine. • proofreading for The Hep C 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 Hep C Helpline for more information.

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16 Feb, 16 March, 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.

Inner city Sydney support groups:

Paediatric viral hepatitis clinic Hepatitis C virus (HCV) and hepatitis B virus (HBV) occur among children in Australia although exact numbers are unknown. Children with HBV and HCV 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 the Council 1. Please complete A or B or C, then complete other side

A. For people affected by HCV, or other interested people

Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: (02) 9332 1730

P ostal address

About the Council

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We are a community-based, non-government membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hep C in New South Wales.

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

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

B. For individual healthcare or related professionals

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

Ma y we li st yo u o n o ur re fe rra l d a ta base ?

Membership

Free copies of The Hep C Review required

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

New South Wales health care workers

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If you would like to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular HCV update information. Please note that we encourage services on our referral database to become members of the Council.

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C. For agencies, organisations and companies

One of our services is the NSW Hep C Helpline, an information and support phone line that is able to refer callers to a range of services and health care workers in their local area (within New South Wales only).

As the most widely read hep C publication in New South Wales, targeting both people affected by hep C and healthcare workers, The Hep C Review is provided free to all members of the Council.

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The Hep C Review

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2 5 10 20 50 80 160

December 2009

membership form / renewal / tax invoice 2. Are you a new or existing member ? This is the first time I've applied to become a financial member

5. Separate donations are gratefully accepted by the Council. Donations of $2 and over are tax deductible. If you would like to make a separate donation, please record the amount here:

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I'm not sure - please check your database 3. Our membership year begins on 1 March and finishes on the last day of February. To become a financial member, please tick one membership fee box, below:

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7. Payment, GST and postage instructions

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

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If paying by cheque or money order, please make payments out to: Hepatitis C Council of NSW - Membership

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

Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285

4 . C o n ta c t w ith th e C o u n c il o ffic e . We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office. I'd like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work for the Council

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9. Declaration - I accept the objects and rules of the Hepatitis C Council of NSW and apply for membership of the Council. I agree to my personal contact details being held by the Council and used in accordance with the Council's privacy policy. Signed:

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