The Hep C Review Spring
September 2008
Edition 62
World Hepatitis Day
National Hepatitis Awareness Week Fincol replaces bleach in NSW prisons Encouraging report on Telaprevir Everyday Lives social research conference overview Social determinants of health Major funding for Australian researchers
The Hep C Review
Ed61
June 2008
1
editor’s intro promotions ‘World Hepatitis Day’ – this new event will
play an important role in helping promote greater awareness around the world – and will serve as a launch pad for national, state and local awareness-raising initiatives. We’re excited to be able to help promote World Hepatitis Day and in this edition you’ll find articles about the big event. Another interesting piece in this edition is our centrespread poster for Fincol. This new cleaning agent has replaced the bleach previously provided in NSW prisons for cleaning injecting and tattooing equipment. Tim Baxter, graphic artist for our posters, has liaised with NSW Department of Corrective Services staff and developed a pretty snappy poster. This is significant, as Fincol plays an important role in helping reducing the risk of hep C transmission occuring within our prisons. Other items you might find of interest in ED61 touch on the United Nations call for decriminalisation of drug users, telaprevir’s potential role in hep C treament, highlights of the Everyday Lives social research conference, social determinants of health, type 2 diabetes, and the Chopped Liver tour. Also there are articles on helping achieve and maintain good general health. There have been a couple of health scares in my family over the last month or two – which have given me a bit of a wake up call regarding the importance of not taking good health for granted. I hope you enjoy these articles. Speaking of not taking things for granted, thank you so much to those readers who responded to our ED60 readership survey. We are analysing your feedback and comments and this will help ensure our magazine best meets your hep C information needs. In closing, we hope you enjoy ED61. Please don’t hesitate to write, phone or email in and let us know what sort of articles you’d like to be reading in three months time. Paul Harvey, Editor
Front cover Earth image from http://images.google.com.au
2
www.hepatitisc.org.au
Volunteers Needed for Hep Connect The Hepatitis C Council of NSW is now recruiting volunteers for Hep Connect – a phone based peer support program which aims to support people thinking about or undergoing hep C treatment. • Do you have experiences of living with hep C? • Have you tried hep C treatment? • Would you like to support others with hep C? • Do you live in NSW? If you answered YES to the above questions we would like to hear from you! To find out more about volunteering for Hep Connect please contact Niki or Emma on 1800 803 990 or email: nparry@hepatitisc.org.au
acknowledgements Calling all members Look inside for your special Membership Update (p45). Our 2008 membership year began on 1 March – we look forward to receiving your applications or renewals. It’s now easier than ever – join or renew securely online... www.hepatitisc.org.au Or use the form at the back of this magazine.
Hep C Review editor: Paul Harvey Editorial Committee: Tim Baxter Kay Bazley Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang HCR medical & research advisors: Dr David Baker Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Geoff McCaughan Dr Cathy Pell Assoc Prof Carla Treloar Dr Ingrid van Beek Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proof reading: Prue Astill Chris Audet Sarah Bowman Judith Campbell Samantha Edmonds Margaret Hancock Adrian Rigg Cindy Tucker
Seeking your personal story Personal stories provide balance to our information articles.
MARLTON comic: Andrew Marlton
They are often written by people with hep C, but also by family members or friends. The experience of health care workers would be equally valuable to many readers. Please consider writing in with your story. Published articles attract a $50 payment.
The Hepatitis C Council of NSW is an independent, community-based, non-profit, membership organisation. We are funded by the NSW Health Department.
Author’s name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Articles should be between 400800 words. Publication of submitted articles is at the discretion of the Editor and Editorial Committee. Articles considered unnecessarily inflammatory or vilifying will not be published. We’re really looking forward to receiving your articles.
phone: 02 9332 1853 fax: 02 9332 1730 email: hccnsw@hepatitisc.org.au website: www.hepatitisc.org.au postal address: PO Box 432 DARLINGHURST NSW 1300 AUSTRALIA Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Aside from HCCNSW editorial comment, views expressed in this magazine or flyers enclosed with it, are not necessarily those of the Hepatitis C Council of NSW. Neither are such views necessarily those of our funding body. Contributions to The Hep C Review are welcomed and are subject to editing for spacing and clarity. Contributors should supply their contact details – although we do not publish such details unless asked. We’re happy for people to reprint information from this magazine provided that The Hep C Review and any particular author/s where such exist are credited, and the edition number and date are highlighted. This permission does not apply to graphics or cartoons. Many of these are not subject to public domain and must not be reprinted without permission of original artists/publishers. If you have any doubts, please contact us. ISSN 1440 – 7884
The Hep C Review
Ed61
June 2008
3
contents letters Conference questions 5 In praise of nurses 5 Bookmarking success 5 news Artificial liver offers new hope 6 Allmans cancel tour – singer fights hep C 6 Tysabri warning 6 UN calls for decriminalisation of drug users 7 Hep C ban slammed 7 Canadian injecting centre gets thumbs up 8 World Hepatitis Day 8 Scottish prison needle exchange 8 ACT prison needle exchange on hold 9 Anti-cholesterol drug could help fight hep C 9 Website helps people with hep C 10 Drug use rife in prison 11 The wrong side of the law 11 New disinfecting product for NSW prisons 11 Research funding gets boost 11 Anti-fungal tablets linked to liver damage 12 Liver function tests urged for women using natural HRT 12 Half NSW adults overweight or obese 13 $17million for new research 13 2008 HCR readership survey 13 Staff changes at HCCNSW 13 Encouraging report on telaprevir 14 NSW care and treatment review 14 National Hepatitis Awareness Week 14 features World Hepatitis Day 15 Hep B screening needed for higher-risk migrant groups 16 Chronic hep B: is there such a thing as a healthy carrier? 17 Highlights from the Everyday Lives social research conference 18 What are social determinants of health? 20 Type 2 diabetes: just diagnosed and needing help 22 Alcohol: what do people think? 26 Fincol takes over the fight against hep C in NSW prisons 29 A tribute to Audrey Lamb 34
4
www.hepatitisc.org.au
Enjoy better health: preventing fatigue 35 Occupational therapy and hep C 36 Hep C – a snapshot of the issues for Aboriginal people 37 my story Murray’s story: coping with hep C 24 Surviving unscathed: Simon’s treatment story 38 opinion Time to intervene and put human rights first 28 Prisons, hep C and harm minimisation 32 promotions Chopped Liver tour 37 Post treatment hep C experiences (study) 40 101 things your GP should tell you (book) 40 What do you do for a living? (study) 41 Access All Areas (DVD) 43 National Hepatitis C Needs Assessment (study) 43 Genetic hep C factors (study) 44 Support people’s support needs study 46 HALC legal centre 47 Retreat for Aboriginal people living with hep C 47 The most precious gift (organ donation) 48 Hepatitis B: what you need to know 48 6th Australasian Conference on Viral Hepatitis 49 research updates Treatment safe and effective for kids 50 New evidence links kava to liver damage 50 Long term hep B outlook often good 51 Standard hep B treatment bested by newcomer 51 Chinese herb may inspire drug development 52 Prejudice among health care workers 52 Resilience and coping 52 An overview of liver disease in Europe 53 Adiponectin predicts fatty liver and treatment response 53 regular features Harm reduction centrespread (Fincol) 30 Hello Hep C Helpline (post treatment coping) 42 An historic perspective 44 Membership matters 45 Interferon-based treatment 54 Complementary medicine 55 Support/info services 56 Noticeboard 58 Membership form / renewal / tax invoice 59
letters
Conference questions I attended a conference a few weeks ago at the National Centre for HIV Social Research at the University of NSW, and I heard someone raise a point about hep C prevention among injecting drug users that I thought was most interesting. We know that hep C is a big problem and while an HIV epidemic has been prevented, a large proportion of injecting drug users continue to catch hep C. But, some injecting drug users DON’T have hep C, including some very long term users. The vital question seems to be then: what are they doing differently?
In praise of nurses I am currently on the combination treatment at Wollongong Hospital. I am writing to share with the readers of your magazine my praise for the nurses whose service to me has been outstanding – both in clinical service delivery and in their personable, nonjudgemental therapeutic approach. My hep C CNC (clinical nurse consultant) forms what I would call an alliance with her patients, from start of treatment, to finish and ongoing. As her patient, I was always fully informed of every aspect of the treatment process and she took time to discuss all of my concerns. She made me feel like we were in this together. I am not a full supporter of the medical-model in regards to health due to the over use of drugs as band-aids for many illnesses. I am a committed believer in the power of optimism and the therapeutic relationship that can exist between the patient and nurse/healer. Many doctors could learn so much from our nurses. Name withheld (NSW)
I actually fall into this category myself – a long term IDU who is hep C negative. I don’t know what I did differently to those injecting drug users who do have hep C but I’d love to find out!
Bookmarking success
Mo (Marrickville)
I am writing to let you know about the success I have had in distributing the hep C bookmarks. The bookmarks that you provided have been distributed throughout the drug and alcohol service at Wyong Hospital and have been well received. I believe this is an excellent resource to get information out there to the community and to workers within associated fields. Staff have requested more bookmarks, as have clients. I will continue to distribute them for as long as needed. Well done, to the designers and initiators of this project. Regards, Sharon, Wyong Hospital. Do you want to help promote hep C awareness in your local area? For more information, see p48. ED
The Hep C Review
Ed61
June 2008
5
news Artificial liver offers Allmans cancel tour – singer fights hep C new hope Scotland – Scientists are developing an artificial liver that could save the lives of hundreds of patients by avoiding the need for an organ transplant. Researchers have created a ‘bioartificial’ liver using living cells in a machine that can filter blood and take over the functions of the natural organ. They believe the artificial liver – which works outside the body in a way similar to kidney dialysis – could help patients with acute liver disease such as hepatitis by giving their own liver the chance to ‘rest’ and heal itself. They also say it could give a patient who is dying from chronic liver failure, such as cirrhosis, valuable, extra time while they wait for an organ transplant. The team of University of Strathclyde researchers are at the forefront of the technology in the UK. They have already created devices that replicate the functions of the liver and are now developing ways to allow the living cells used within the device to thrive better. Deaths from liver disease are increasing and researchers are trying to find alternatives to transplantation. Dr John Gaylor, from the Bioengineering Unit at the University of Strathclyde, has led the team responsible for developing the artificial liver. He said patients could benefit from the treatment within a decade if sufficient funding is put into the research. A spokeswoman for the British Liver Trust said of the developments: “This sounds particularly positive as there is currently nothing similar out there for liver patients. The benefits could be enormous.” • Abridged from http://news.scotsman.com (27 Nov 2007) via www.hcvadvocate.org
6
www.hepatitisc.org.au
USA – Veteran southern rock group the Allman Brothers Band has postponed 15 shows scheduled for May at New York’s Beacon Theatre while singer Gregg Allman recovers from treatment for hep C. The virus has been ‘eradicated’ from Allman’s system after a six-month treatment program, but it has left him tired, according to a statement. “I need to be at 110% to do the shows the way we do them,” said Allman, aged 60. The Allman Brothers Band, established in 1968 by Gregg’s late brother, Duane, is best known for such classic-rock anthems as ‘Ramblin’ Man,’ ‘Midnight Rider’ and the epic ‘Whipping Post.’ • Abridged from http://nz.entertainment.yahoo. com (27 Mar 2008) via www.hcvadvocate.org
Tysabri warning UK – The European Medicines Agency said that warnings about liver injury should be added to the product information for the multiple sclerosis drug, Tysabri, and that doctors should monitor the liver function of patients receiving the drug. • Abridged from www.medscape.com (20 Mar 2008). Tysabri was approved by the Australian Therapeutic Goods Administration in 2006 for use in relapsing-remitting MS. ED
UN calls for decriminalisation of drug users USA – The United Nations Secretary-General supports calls for Asian governments to amend outdated laws that criminalise injecting drug users and other stigmatised groups. At the recent launch of a major new report on HIV in Asia, UN Secretary-General Ban Ki-Moon called for increased protections of health and human rights for people living with HIV, sex workers, men who have sex with men, and young people who inject drugs. Commenting at the launch of the report, Redefining AIDS in Asia: Crafting an Effective Response, UNAIDS director Peter Piot also called for action. “I look to Asian Governments to amend outdated laws criminalising the most vulnerable sections of society, and take all the measures needed to ensure they live in dignity.” The report urges governments to provide a comprehensive package of harm reduction, including needle exchange programs and opiate substitution treatment, and says governments should abandon counterproductive ‘war on drugs’ programs. One of its key recommendations is to avoid programs that accentuate AIDS-related stigma. These include ‘crack-downs’ on red-light areas and arrest of sex workers, large-scale arrests of young drug users under the ‘war on drugs’ programmes, mandatory testing in healthcare settings without the consent of the person concerned, and releasing confidential information on people who are HIV positive through the media.
news Hep C ban slammed United Arab Emirates – The United Arab Emirates (UAE) has been singled out for condemnation by global health organisations following the news that hep C has been added to the country’s list of deportable diseases. A UAE Ministry of Health circular, which was leaked to the press last month, said that visa applications and renewals would now include a screen for hep C. Existing residents will face deportation if they test positively for the virus. Charles Gore, president of the World Hepatitis Alliance, called the decision “incredibly disappointing.” “I find it particularly surprising weeks before the first World Hepatitis Day, which focuses on how global a problem this is. The notion of exporting the disease does not quite fit in,” he said. Hepatitis Australia, a partner in World Hepatitis Day told Medical Times it was “disappointed” at the UAE government’s decision. Dr Zainab Khazaal, director of preventive medicine for the Health Authority Abu Dhabi (HA-AD) defended the government’s resolution, declaring the matter a “question of health economics.” The move is intended to force countries to screen migrant workers for hep C before they arrive in the UAE, Khazaal said. Gore suggested the “unethical” move is equally likely to hamper the UAE’s attempts at establishing a globally competitive health service. “A world-class health system is not just a delivery of services and the latest equipment. It’s also about ethics,” he said, adding that, with travel, diseases can no longer be viewed in terms of single country health.
These initiatives can be counterproductive and can keep large numbers of at-risk groups and people living with HIV from accessing even the limited services being provided by the countries.
“I think other countries will feel far less inclined to cooperate with the UAE if they are going to have this mentality regarding diseases. No single country is an island any more and it is a very unfortunate way to deal with a health problem.
• Abridged from www.tdpf.org.uk (31 March 2008).
• Abridged from www.arabianbusiness.com (6 May 2008) via www.hcvadvocate.org
The Hep C Review
Ed61
June 2008
7
news Canadian injecting centre gets thumbs up Canada – Vancouver’s much-debated Insite supervised injection site for drug users is well supported by the community, provides as much as $4 in benefits for every dollar spent, doesn’t lead to increased drug use, doesn’t appear to affect crime rates, encourages users to seek treatment, and saves at least one person a year from dying of a drug overdose. These were some of the positive conclusions of an expert advisory committee, appointed by Health Canada. The committee was appointed last year to review the existing research on Insite. It found there was in-fact, generally, favourable evidence about the site’s impacts. The report also suggested other types of research that could be done and noted the limitations of existing studies. Despite this evidence and strong support from the Vancouver City authorities and British Columbia state government, conservative Canadian Prime Minister Stephen Harper continues to oppose Insite’s ongoing operation.
Scottish prison needle exchange Scotland – A prison needle exchange project aimed at reducing the spread of infection may be piloted in Aberdeen in a UK first. Prison and public health chiefs hope that if this scheme is supported and put in place, it will help to reduce hepatitis C and other infections that are commonly contracted through sharing dirty needles and syringes among prison inmates. The suggestion for the pilot, where clean needles will be provided and dirty ones disposed of, has been highlighted as part of a first year progress report on Scotland’s Action Plan for Hepatitis C, introduced by the Scottish Executive in September 2006. A spokesman for the Scottish Prison Service stated that nothing had been decided yet. “The focus is purely on harm reduction and reducing the amount of transferred diseases. We need to be pragmatic about this. This is not about making it easier for prisoners to take drugs.” He said that a recent prisoner survey showed prisoners injected drugs in prison and many shared needles.
• Abridged from www.dailydose.net (12 April 2008).
The spokesman said Aberdeen was a logical place to pilot the scheme as prison staff were at the forefront of working with prisoners and drugs.
World Hepatitis Day
Dr Maria Rossi, consultant in public health medicine, said that needle exchanges had proved valuable in communities and that they could also prove useful in the context of reducing the spread of infectious diseases in prisons.
Australia – The 2008 World Hepatitis Day (WHD) campaign focused on the magnitude of chronic viral hepatitis as a health challenge using a memorable question: “Am I number 12?” This simple question highlights the fact that approximately one in every 12 people in the world has chronic hepatitis B or chronic hepatitis C; that the infection often goes undiagnosed for long periods, and that it could affect any one of us. The World Hepatitis Alliance kicked off World Hepatitis Day 2008 with a press event in Geneva on May 19 to coincide with the first day of the WHO World Health Assembly meeting. • Abridged from WHD press release 8
www.hepatitisc.org.au
“A lot of footwork needs to be done to show that it can be effective in a prison context as well. It must be properly evaluated,” said Dr Rossi. Julian Winter, a patient advocate of the charity, The Hepatitis C Trust, was cautious but optimistic. “It sounds like a positive step forward. If it is likely to reduce instances of hep C, then, from our point of view, it is a good thing,” said Mr Winter. • Abridged from www.thisisnorthscotland.co.uk (29 Jan 08) via www.dailydose.net
ACT prison needle exchange on hold Australia – Hopes of the first Australian prisonbased needle-exchange program to be introduced this year, have been dashed. The $128 million Alexander Maconochie Centre in the ACT will open later this year, with a focus on rehabilitation. But after four years of debate, ACT Government ministers have stepped back from introducing a needle-exchange program, claiming more research is needed. Prison needle-exchange programs have been supported by public health professionals and the Royal Australasian College of Physicians, and recommended by the Australian National Council on Drugs. ACT Health minister Ms Katy Gallagher told the ABC, “We’re certainly not taking it off the table, but we’re saying give us 12 to 18 months, come back to government with your health researchers’ own data around our own prison population, their health needs ... and based on that we will make our decision.” Health workers will be tasked with collecting data on drug use and infections among prison inmates. Hep C infection rates for men in NSW prisons have been estimated at about 40%, and for women prisoners at about 60%. This compares with the one-percent rate of infection in the general population. Needle-exchange schemes have been successfully used in Canada and Spain, but prison officer unions in Australia have resisted the idea, warning that prisoner access to needles presents a potential safety threat.
news Anti-cholesterol drug could help fight hep C USA – A commonly prescribed anti-cholesterol drug holds hope for hep C patients, University of Oklahoma Health Sciences Centre researchers have found. Dr Ted Bader, a gastroenterologist and staff physician at the Oklahoma City VA Medical Centre, studied the effect of fluvastatin on US war veterans with the liver disease, most of whom didn’t respond to the standard anti-viral treatment. In the study, Bader treated 31 veterans at the VA Medical Centre with fluvastatin, which slows the body’s production of cholesterol. The drug has been on the market since 1993. When given to study participants daily for two to 12 weeks, it lowered the level of the virus in their blood six-fold in two out of three patients. Half the patients showed a reduction in the virus in their blood within a month. Although fluvastatin alone doesn’t eliminate the virus, it may improve the recovery chances of those who don’t respond to standard therapy. Bader’s findings appear in the American Journal of Gastroenterology. He is now recruiting people in a phase II trial to be treated with fluvastatin and the standard hep C drugs. Because fluvastatin doesn’t rid the body of the virus, the other drugs are needed. Despite needing further testing and FDA approval, fluvastatin still could be available much sooner than other drugs currently under research and development, Bader said. • Abridged from The Oklahoman, 11 April 08, via http://newsok.com
• Abridged from Aust Doc, 23 Mar 08. Also see p28. ED
The Hep C Review
Ed61
June 2008
9
news Website helps people with hep C Canada – The Caring Ambassadors Program (CAP), a national nonprofit organisation, has released a new internet medical management tool, Hep C Discussion Point at www. hepcchallenge.org/ Discussion Point takes you through a guided series of questions about your hep C experience. It analyses your responses and generates a report designed to be used as both a learning tool for you, and as a guide to facilitate communication between yourself and your doctors. Discussion Point was developed by CAP in conjunction with leading experts in the field of hepatology to help facilitate, inform, and enhance the therapeutic decision-making process by providing discussion points on state-of-theart hep C management. Discussion Point is a groundbreaking effort, and is the only tool of its kind designed exclusively for hepatitis C clients and their health care providers. “We are excited about the launch of Discussion Point and are very pleased to offer this tool to the hepatitis C community, which includes both patients and their health care providers,” said Dr Tina St John, Executive Director and Medical Director of the Caring Ambassadors Program. “Discussion Point represents a new and innovative approach to CAP’s commitment to ensuring that all persons living with hep C have accurate and adequate information by which to make decisions that match their personal medical circumstances and health care goals.” The Caring Ambassadors Hepatitis C Program (CAP-Hepatitis C) is a Canadian non-profit organisation whose mission is to improve the lives of people living with hep C through information and awareness. • Abridged from http://biz.yahoo.com (11 March 2008) via www.hcvadvocate.org Also see the ‘hepCaustralasia’ online peer support forum, p47. ED
10
www.hepatitisc.org.au
Drug use rife in prison Australia – Prison authorities have expanded drug detection tests in Victorian prisons after discovering an increasing number of inmates abusing a heroin dependence substitute. With the addition of the drug buprenorphine to Corrections Victoria’s drug-testing regime, comes new statistics revealing that scores of prisoners remain drug-dependent while in Victorian prisons. Buprenorphine is a semi-synthetic opiate introduced in Victoria in the late 1990s as a treatment for heroin dependency in cases where methadone was deemed inappropriate. Professor Nick Crofts, from Melbourne University’s Nossal Institute, said that although buprenorphine was a treatment drug, it also offered users a ‘high’, increasing its likelihood of being abused. Documents obtained by The Age under freedom of information laws revealed that hundreds of Victorian prisoners, despite being in custody, are being convicted of drug offences. Corrections Commissioner Kelvin Anderson confirmed that Corrections Victoria had recently held a re-evaluation of its ‘Identified Drug User’ program for managing inmates who are convicted of drug offences while behind bars. He said the program would remain, but authorities were considering whether it would be more effective if the program was more understood and accessible for prisoners, family members and corrections staff. But Professor Crofts said Victorian prisons would never be free of drugs. “Drugs are an issue in prison because of boredom and lack of meaningful occupation. Until the prison system is reformed, you are going to continue to have a demand for drugs,” he said. • Abridged from The Age, 14 Jan 2008, via www.ancd.org.au
The wrong side of the law Australia – A study has found that young offenders have high rates of substance abuse, hep C infection and learning difficulties, but they share the same sorts of hopes and dreams as other people of their age. University of Sydney researchers assessed 800 NSW juvenile offenders who were placed on community orders, rather than being incarcerated. Most had been charged with assault, robbery, theft, and breaking and entering. The study found high rates of intellectual disabilities, learning difficulties and substance use. Almost half had committed a crime to obtain drugs or alcohol. A third were overweight, a third of the girls had been pregnant, and a tenth were mothers. One quarter of women and 14% of males had a sexually transmitted infection, and 8% of all offenders had experienced nonconsensual sex. Nine per cent of young offenders in custody were hep C positive and 5% of those on community orders were hep C positive [this compares to a prevalence in the general community of around one per cent]. There were also high rates of head injuries, which the researchers stated were a precursor to violent offending. Yet, more than half the youths reported feeling “delighted, pleased or mostly satisfied” with their lives. Professor Dianna Kenny, who ran the study in conjunction with the Department of Juvenile Justice and Justice Health, said many “wanted the house with a picket fence, the family, the job.” “However, given their current functioning and skill, they were quite unlikely to achieve [them].” • Abridged from The Sydney Morning Herald, 15 March 2008.
news New disinfecting product for NSW prisons Australia – The bleach detergent mix CCF5T has been replaced by a disinfectant product called Fincol throughout the NSW correctional system. Fincol has been tested at the Centres for Disease Control in the USA against HIV, hep B and a surrogate virus for hep C, and was found to be effective against all three. Fincol is less toxic and corrosive than CCF5T, doesn’t deteriorate when stored in cold or hot conditions, and retains its effectiveness for up to eight hours after it is mixed with water. • NSW Department of Corrective Services. For more information, see p29 & p30, ED.
Research funding gets boost Australia - The University of NSW (UNSW) has announced a number of new research centres and projects that have been funded under the Vice-Chancellor’s Strategic Priorities Fund. The $20 million fund has been created to assist in the development of teaching, research and infrastructure projects that support the University’s strategic priorities to confirm UNSW distinctiveness and substantially strengthen research. Allocations from the fund in 2007 will see the creation of several new UNSW research centres and the development and support of research projects. Many of these projects highlight the cross-disciplinary strengths of the University. The projects include a hep C vaccine initiative involving researchers from the Faculties of Medicine, Arts and Science. • Abridged from news@unsw, 3 April 2007. This is a news item that slipped under the radar last year. It is something that should be noted so we’ve run it in this edition. ED The Hep C Review
Ed61
June 2008
11
news Anti-fungal tablets linked to liver damage Australia – Three people have died and several others have suffered serious liver reactions after taking Lamisil, a pill formulation for ringworm and nail fungal infections, the Therapeutic Goods Administration (TGA) says. The medication is commonly prescribed to people who do not respond to topical fungal creams, but the regulator’s Adverse Drug Reactions Advisory Committee (ADRAC) warns it can cause liver failure. The committee has received 722 adverse event reports related to Lamisil, known generically as terbinafine, including 70 liver reactions, 61 implicating the tablet form as the sole suspected drug. Those affected ranged from 20 to 85 years old, with half suffering a liver reaction within the first month of taking the pills. “Most of the reports documented minor abnormalities of liver function but three describe fatal liver failure, 10 describe hepatitis, and 12 described jaundice,” stated the committee’s latest drug reactions bulletin. The committee warned prescribers that the oral formulation should only be prescribed short-term and as a last resort. A spokesman for the drug’s manufacturer, Novartis, stated that serious and life-threatening liver reactions were rare, and side-effects of oral anti-fungal medications were well documented. The company said it agreed with the advice issued by ADRAC. • Abridged from AAP, 4 Feb 08, via www. medicalsearch.com.au
Liver function tests urged for women using natural HRT Australia – Women who take menopause medication containing the herbal extract black cohosh are being recommended to have liver function tests after a South Australian woman suffered organ failure while taking the remedy. Thousands of Australian women, and millions worldwide, take over-the-counter remedies with black cohosh for the relief of menopausal symptoms like hot flushes, night sweats and irritability. The extract, first used for gynaecological conditions by North American Indians, is a key ingredient in more than 200 drugs and is marketed as a natural and safe alternative to controversial hormone replacement therapy (HRT). But while studies show the extract is well tolerated, there are emerging reports of a rare but severe side effect on the liver. Seven women have suffered liver failure in the past decade, five requiring liver transplantation, and in a new case, reported in the Medical Journal of Australia, an otherwise healthy Adelaide woman had to undergo a transplant. Her treating physician, Dr Elizabeth Chow from Flinders Medical Centre in Adelaide, said the patient had taken the drug within the recommended dose over three years. Dr Chow said the latest case was further proof that tighter regulations were required to monitor the use and safety of these preparations. “There is a widespread belief in the community that ‘natural’ plant substances are safe, effective and free of side effects,” she said. The Therapeutic Goods Administration updated labels on black cohosh products in 2006 and again in November 2007 in response to adverse drug events reported worldwide. • Abridged from AAP, 6 April 08, via www. medicalsearch.com.au
12
www.hepatitisc.org.au
news Half NSW adults overweight or obese Australia – The latest data, published in the NSW Health Annual Report 2006/07, shows there are now a dozen regional areas and seven urban areas where more than half the adult population is overweight or obese. Premier Morris Iemma says the figures show the whole community needs to face the growing problem, not just governments and the health system. “This is a real warning sign of heart disease and diabetes to come into the future,” he said. “Get on the bicycle, get walking. That is the best way to prevent heart disease, type 2 diabetes and a lot of other lifestyle illnesses,” he said. • Abridged from ABC News, 28 Jan 2008. Also see article on type 2 diabetes, p22. ED
$17million for new research Australia - The University of NSW (UNSW) has been awarded the largest Australian grant in its history, receiving $17.7 million in funding to advance understanding of both hep C and HIV. Professor David Cooper from UNSW’s National Centre in HIV Epidemiology and Clinical Research will lead a nine person team combining researchers with skills in virology and immunology with those who have expertise in translating findings in the laboratory into human clinical trials. • Abridged from www.news-medical.net (5 Feb 2008) via www.hcvadvocate.org Research partners include Andrew Lloyd from the University of NSW and Greg Dore from the National Centre for HIV Epidemiology and Clinical Research. ED
2008 HCR readership survey Australia – Many thanks to all those readers who sent in their ED60 Hep C Review (HCR) readership forms. We have entered the data and will provide feedback on the survey in the next edition of The Hep C Review magazine. Congratulations to Tristan, Alyson, Scott and Elizabeth, our survey prize draw winners. • HCCNSW
Staff changes at HCCNSW Australia – Scott West has joined the Council staff team as Project Officer Information and Resources following the departure of Emily Seaman. Scott will play a leading role as editor of our soon-to-be released, easy-read hep C magazine. We’d like to thank Emily for her work with the Council, specifically the development of our AOD hep C treatment promotional resources (see p45). • HCCNSW
Conference update ‘Hepatitis B & C at the Crossroads’ The 6th Australasian Conference on Viral Hepatitis. 20-22 October 2008 in Brisbane. Abstracts deadline: 18 July 2008. Early bird registration by 29 Aug 2008. http://hepatitis.org.au/ Also see p49. ED
The Hep C Review
Ed61
June 2008
13
news Encouraging report National Hepatitis on telaprevir Awareness Week Australia – Results from two studies presented to a European conference of liver specialists show that when a new drug called telaprevir (also known as VX950) was taken alongside combination treatment for the first 12 weeks of treatment, the success rate increased from 41% to 61%. More significantly, the treatment time was halved from 48 weeks to 24 weeks. Telaprevir is the most advanced of a new class of drugs for hep C infection called protease inhibitors, which work by blocking a key stage of the virus’s replication cycle. Presenting the findings at the European Association for the Study of the Liver conference, lead investigator John McHutchison said that if these results were borne out in a larger trial about to start, the drug had the “potential to halve treatment duration for most people.” • Abridged from The Weekend Australian, 26 April 2008.
NSW care and treatment review Australia – At the time this edition went to print, NSW Health had still not publicly released the report following its review of hepatitis C care and treatment services in NSW. The report calls for a doubling of the numbers of people with chronic hep C accessing antiviral treatment. However it notes that treatment services are operating at maximum capacity. Without a substantial injection of new funds and without effective service coordination, treatment capacity will remain at its current low level, and liver disease will progress unnecessarily for many people with hep C. Not only will this create extreme hardship for those people affected, but it guarantees that inpatient healthcare costs will place further, unnecessary demand on an already overburdened NSW hospital system. • HCCNSW 14
www.hepatitisc.org.au
Australia – National Hepatitis Awareness Week, ran from May 19 to May 26. It aimed to raise awareness of viral hepatitis among Australians and secure the support of government to strengthen prevention efforts and improve the diagnosis, treatment, care and support of people living with viral hepatitis. The campaign included hundreds of local initiatives and several larger events. These included the online national launch of Haemophilia Foundation Australia’s Hepatitis Awareness Week Information Updates. The Australian Injecting and Illicit Drug Users’ League (AIVL) also hosted a public forum at the ACT Legislative Assembly, Exhibition Room which explored the issue of needle exchange programs in Australian prisons. Be Positive: everything you wanted to know about hep B – a practical resource to support primary care providers in combating hepatitis B – was launched by the Australasian Society for HIV Medicine (ASHM) and The Cancer Council of NSW. For the full overview of the recent National Hepatitis Awareness Week program, visit www. hepatitisaustralia.com • HCCNSW
feature
World Hepatitis Day World Hepatitis Day took place on 19 May and from all reports, was a great success.
H
epatitis Australia played a key role in preparing and promoting World Hepatitis Day, which also formally opened the Australian National Hepatitis Awareness Week. The event was formally launched at a cocktail reception at Circular Quay on Sunday 18th May. Invited guests and media enjoyed an exclusive performance from former Air Supply band member, Criston Barker who has personal experience of having lived with chronic viral hepatitis. The 12 Asks A key plank of the global event was a push for political change. Governments around the world had been asked to commit to putting in place 12 constituents of an effective hepatitis program. They had been asked to initially commit to them by 2012. Six of the 12 are universal for all countries, and a further six had been developed specifically for Australia. In a welcome first, Australian Health Minister Nicola Roxon committed to a national hep B strategic response as part of an overall viral hepatitis strategy. You can view the 12 Australian asks at www. hepatitisaustralia.com Hepatitis Atlas Up until recently, information on global hepatitis trends had been surprisingly out of date. Data for the Hepatitis Atlas was collected across the world, collated and analysed in the development of a global Hepatitis Atlas. The Atlas was launched on WHD and can be viewed on the global campaign website www.aminumber12.org
Image courtesy of www.google.com
Teaser Campaign The global teaser website www.aminumber12.org went live on 26 March. Thousands of supporters signed up and on World Hepatitis Day the teaser website automatically became the global World Hepatitis Day website.
Spotlight Campaign In order to demonstrate the fact that it is a truly global campaign – which was the rationale for the projections – all participating countries captured photographic images of the teaser logo in front of iconic landmarks. Many of these images were uploaded to the global campaign website. State and Territory Based Activities Individuals and organisations across Australia delivered many varied events for World Hepatitis Day and National Hepatitis Awareness Week. Their hard work and imagination helped ensure that the events were a success. A comprehensive list of these activities is viewable on the Hepatitis Australia website. China’s large-scale World Hepatitis Day Chinese officials implemented ambitious plans for World Hepatitis Day. On 19 May a summit on hepatitis prevention was held in the Great Hall of the People in Beijing. Leading experts and Ministry of Health officials discussed China’s hepatitis epidemic and reviewed best practices in controlling the disease. Activities also took place at the Great Wall of China – where about 500 people, including government officials, experts, celebrities, students and over 100 journalists, came together to raise awareness of hepatitis. United Kingdom – Louie, Me & Hepatitis C The UK Hepatitis C Trust organised for 250,000 people to watch the documentary Louie, Me & Hepatitis C in one night. The film is an explicit depiction of a single mother’s fight to eradicate her hep C with a year’s course of hep C treatment. • More information about World Hepatitis Day and the Australian National Hepatitis Awareness Week successes can be found at www.hepatitisaustralia.com
The Hep C Review
Ed61
June 2008
15
feature
Hep B screening needed for higher-risk migrant groups Screening some migrant groups would detect hundreds of cases of hep B and help prevent cirrhosis and liver cancer in Australia, say liver disease experts.
T
he call for hep B screening in Australia follows a study revealing that nearly one third of a random sample of pregnant women with chronic hep B infection, was unaware of their status until it was identified during screening as part of their antenatal care. Another 12 percent of the sample of women were diagnosed hep B positive by a GP in the same year as their pregnancy, suggesting the virus was also detected as part of routine antenatal testing. The finding by a team of researchers at UNSW and Liverpool Hospital means that nearly half of the pregnant women with HBV infection didn’t know they had hep B infection prior to being screened through pregnancy care. Most of the women (84%) were South East Asian migrants in their mid 20s. A baby who contracts hep B has a much higher chance of developing a longstanding and damaging infection compared with adults who contract the virus. One quarter of babies born to hep B positive women have the virus at birth. While adults may become quite sick and take weeks to recover from acute infection, they usually clear the infection completely. However, when the infection is acquired at birth or in the first years of life, it usually becomes chronic and poses significant long-term health risks, including a 30 percent chance of developing liver failure or liver cancer later in life. The incidence of liver cancer in Australia has increased by nearly 250% in the past 20 years. Commenting on the findings, UNSW virologist Dr Peter White says: “The high prevalence of hep B didn’t surprise me. What does surprise me is the lack of screening by authorities, particularly as hep C and HIV are already screened for.” The true, underlying rate of hep B infection in Australia is unknown because screening is not routinely done across the population. Latest
16
www.hepatitisc.org.au
figures reveal that between 90,000 and 160,000 Australians have chronic hep B infection. Dr Miriam Levy, a UNSW liver diseases expert who co-authored the research, says: “Generalised screening of the migrant population is likely to identify hundreds of cases of unrecognised hep B infection.” Australia’s hep B prevention program provides screening for pregnant women and a vaccination regime to reduce the risk of infection being passed from mother to baby. Vaccinations are offered to school children and babies. Health workers are also offered vaccination but it is not offered in other circumstances. Dr Levy says hep B targeted screening should be made available for other high risk groups – such as people immigrating to Australia from Asian countries such as Vietnam, Cambodia and some African nations – to promote early treatment and prevent life threatening complications. “Mass screening isn’t on the table as a policy option at present because some leaders in the infectious diseases community [consider that bureaucrats] fear that the publicity may provoke racism and discrimination,” Dr Levy says. Guidelines are being developed for GPs that alert them to the high prevalence of HBV in these migrant populations, so that screening can be offered. Although the study focused on hep B awareness among pregnant women in SW Sydney, national hep B infection rates are highest among men (3.1 per 100,000) and women (2.3 per 100,000) in the 25 to 29-age bracket. The incidence of hepatitis in the Northern Territory is more than three times the national average. • Abridged from www.aushealthcare.com
feature
Chronic hep B: is there such a thing as a healthy carrier?
There have been significant advances in our understanding of what happens to people who have chronic hep B virus infection. Dr Sam Galhenage and colleagues provide a valuable overview.
A
number of studies have led to the realisation that anyone with detectable hep B surface antigen is potentially at risk for complications of liver disease. It is now recognised that clinical outcomes are determined by the interplay between the virus and a person’s immune response. This relationship between virus and the immune system changes over the life of a person. The majority of infected persons in the world – currently estimated at approximately 400 million – are thought to have contracted their hep B at birth, or in early infancy. From the time of infection, chronic hep B passes through phases of relative inactivity, and phases of activity with progressive liver damage. It is currently thought that there are four phases of chronic hep B, including: 1. an immune tolerance phase in childhood and adolescence, in which there are very high levels of virus, but no accompanying active liver disease; 2. an immune clearance phase in which the immune system attempts to clear the virus, resulting in liver damage; 3. an immune control phase characterised by low levels of virus and no obvious liver damage, and 4. an immune escape phase, during which the virus mutates, evades the immune system and causes more liver damage. During the first and third phases, people have no obvious ongoing liver damage and, in the past, have been called ‘healthy carriers’ or ‘inactive carriers’. However, people do not always stay in these states, as they move from one phase to another, and are always at risk for hepatitis flares or progressive liver damage and the development of cirrhosis.
People in the first (immune tolerance) or the third (immune control) phases are generally not offered antiviral therapy, as therapy has never been shown to result in benefit. Rather, people in the second and fourth phases should be actively monitored for antiviral therapy by assessment of liver enzymes, hep B levels, and liver biopsy. With these people, therapy has been shown to result in normalisation of liver enzymes, improvement in liver damage, and reduced rates of liver failure and primary liver cancer. Thus, all people who are ‘hep B surface antigen positive’ need to remain in longterm follow-up to ensure they are assessed properly and on a regular basis. This will allow their identification as they are moving from one phase to another and will provide the opportunity for further reassessment of the need for antiviral therapy. Nobody with chronic hep B should be considered to be a ‘healthy carrier’ and nobody should be dismissed from regular follow-up. There is no such thing as a ‘healthy carrier’ of hep B. • Dr Sam Galhenage and Professor John Olynyk, Fremantle Hospital, Western Australia; Professor Darrell Crawford, Greenslopes Private Hospital, Queensland; Professor Geoff McCaughan and Associate Professor Simone Strasser, Royal Prince Alfred Hospital, NSW. Abridged from an Australian Society for HIV Medicine article. For further information about hep B, including testing, follow the links at www. hepatitisc.org.au ED
The Hep C Review
Ed61
June 2008
17
feature
Highlights from the Everyday Li
The Everyday Lives conference was held in Sydney on 27-28 March. It brought together a range of peop community and health planning fields. Christina Thomas reports back with her point of view on some o Living with hep C Nadine Krejci made the point that treatment can be difficult for people who are working. It brings their illness out into the open because they are visibly sick as a result of the treatment side effects. They have to grapple with what to tell people and whether to expose themselves to potential stigma. Magdalena Harris highlighted that some people with hep C resist messages to abstain from or reduce their alcohol intake. There were several reasons proposed: alcohol being one of their few pleasures, alcohol helping them in social interaction, alcohol’s addictive nature. Harm reduction messages need to engage with the different meanings alcohol can have for people. Loren Brener presented findings that discrimination by health care workers tends to lead to poorer physical health among people who inject drugs – whereas discrimination by others tended to affect mental health. Indigenous research and health promotion Presentations from Sarina Solar and Julie Mooney-Somers overviewed some of the principles, ethics and challenges of undertaking research within Aboriginal communities. They highlighted negative examples of research conducted within Aboriginal communities that have resulted in few tangible outcomes. Partnerships with Aboriginal organisations and communities are an important part of effective research. This involves working in true partnership, allowing flexibility and joint planning and development of the research. Another important component of conducting effective research within Aboriginal communities is building the capability and capacity of Aboriginal organisations to undertake their own research. It was highlighted that Aboriginal organisations must benefit directly from the processes and outcomes of the research.
18
www.hepatitisc.org.au
The Aboriginal Health and Medical Research Council of NSW with the National Centre in HIV Social Research presented the results of a comprehensive survey of young Aboriginal people in NSW aged 16-30. The survey related to knowledge, risk behaviours and health service access for viral hepatitis, sexually transmissible illnesses (STIs), and HIV. While knowledge of hep C is generally good, there are some clear gaps related to hep C treatment. Young people’s access to health services for STIs and blood-borne viruses was equally shared between private GPs and Aboriginal Community Controlled Health Services. Hep C health promotion and peer support Several presenters gave good presentations on health promotion and peer support initiatives carried out by Hepatitis Councils. Reporting on an evaluation of the NSW C-een & Heard Service, Grenville Rose said that C-een & Heard workers enjoyed speaking of their personal experiences and that the service was effective in reducing stigma. Debriefing of speakers, which the Hepatitis C Council of NSW continues to provide, is regarded as essential. He said that greater feedback from speakers who drop out would be useful in planning future training and services. Emma Ward presented on the Hep Connect service, highlighting its role in helping alleviate social isolation of people with hep C. Nick Bennet and Ken Abrahams presented on the hepCaustralasia internet peer support forum and its usefulness in helping break down isolation and build social capital. Jodie Walton gave a presentation on Picnics in the Park. This impressive Queensland initiative aims to build social capital and improve access to services for marginalised and disadvantaged communities.
feature
ives social research conference
ple working in the social research, medical, of the conference highlights. Drugs, blood-borne viruses and risk Matthew Dunn highlighted the need to target health promotion to people, less readily– identifiable as a risk group. Within a group of 741 regular ecstasy users, 13% had injected drugs in the last six months. Only around half of these people had been tested for blood-borne viruses. Of those tested, 10% were hep C positive. The number of competing health messages was seen as a challenge in targeting this group.
Image courtesy of www.google.com
Carla Treloar discussed a fascinating study involving videotaped recordings of people injecting at the Medically Supervised Injection Centre. The interviewers discussed participants injecting practices pre-, during- and postinjection and then showed them the tape. It highlighted the extent to which users are unaware of their own risky practices. A videotape of a couple also indicates the extent to which people learn injecting practices from each other. The next phases of the project are focus groups with people who inject drugs and then the development of a model for peer education based on the data. The aim is to bring about more mindful and safer practices. Max Hopwood presented research findings from fifteen in-depth interviews with people who access pharmacy-based injecting equipment. They chose to use pharmacies: to avoid the stigma of being publicly identified and demonised as injecting drug users, to lessen their interaction with the culture which surrounds drug prohibition in order to facilitate self-management of drug use, to avoid being hassled by the police, and to avoid surveillance by health professionals. Max emphasised that people who inject drugs come from all walks of life whereas illicit drug research tends to recruit from narrow sources like NSPs which can create skewed and biased understandings of illicit drug users’ problems and health service needs. People who inject and attend pharmacies highlight a hidden diversity among illicit drug users. Daniel Mogg gave a very thought provoking and topical paper on overcoming non-engagement
and resistance on the issue of a needle exchange program for the new ACT prison. He examined the discourse on the topic by stakeholders and then looked at what schools of thought, other than an evidence based rational approach, had to offer in fostering engagement and overcoming resistance. Social identity theory asserts that individuals define themselves according to the groups to which they belong, noting that prison officers work as tight teams isolated from ‘others’. Tim Rhodes’ (UK) presentation examined the inter-relationship between risk environments and hope. Hope is a motivating force which affects how people think and act, and is seen as a determinant of health status. Measuring hope involves determining whether people have a sense of agency [i.e. being self-empowered and able to take ownership of decisions and actions] and can engage with and plan around their health and illness issues. All-in-all, it was a very useful and enlightening conference. As with such events, there was so much information packed into the available time. It was difficult deciding which sessions to attend – I wished I could have gone to them all! • Christina Thomas serves on the Hepatitis C Council of NSW Board of Governance. Please phone the Hep C Helpline for more background on the speakers mentioned.
The Hep C Review
Ed61
June 2008
19
feature
What are social determ
This article by Richard Wilkinson and Micheal Marmot introduces Social determinants of health: the sol
E
ven in the most affluent countries, people who are less well off have substantially shorter life expectancies and more illnesses than the rich. Not only are these differences in health an important social injustice, they have also drawn scientific 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 remarkable sensitivity of health to the social environment and to what have become known as the ‘social determinants of health’. Social Determinants of Health: the Solid Facts is a 32 page booklet that outlines the most important parts of this new knowledge as it relates to areas of public policy. The ten topics covered are: • the social gradient • stress • early childhood • social exclusion
20 20
www.hepatitisc.org.au www.hepatitisc.org.au
• • • • • •
working conditions unemployment social support drug dependence access to good food access to transport
In each case, the focus is on the role that public policy can play in shaping the social environment in ways that improve health. This focus is maintained whether we are looking at behavioural factors, such as the quality of parenting, nutrition, exercise and substance abuse, or at more structural issues such as unemployment, poverty and the experience of work. Each of the chapters contains a brief summary of what has been most reliably established by research, followed by a list of implications for public policy.
minants of health?
feature
lid facts, a discussion paper from the World Health Organisation. 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. This is now changing. While medical care can prolong survival and improve prognosis after some serious diseases, more important for the health of the population as a whole are the social and economic conditions that make people ill and in need of medical care in the first place. Universal access to medical care is clearly one of the social determinants of health. Why, in this new publication on the determinants of health, is there nothing about genes? The new discoveries on the human genome are exciting in the promise they hold for advances in the understanding and treatment of specific diseases. But, however important individual genetic susceptibilities to disease may be, the common causes of the ill health that affects populations are environmental: they come and go far more quickly than the slow pace of genetic change because they reflect the changes in the way we live. This is why life expectancy has improved so dramatically over recent generations; it is also why some countries have improved their health while others have not, and it is why health differences between different social groups have widened or narrowed as social and economic conditions have changed.
Image by Optimieron, courtesy of www.flickr.com
Nevertheless, as both health and major influences vary substantially, according to levels of economic development, the reader should keep in mind that the bulk of the evidence on which this publication is based, comes from rich developed countries and its relevance to less developed countries may be limited.
the sections converge on the need for a more just and caring society – both economically and socially. It is not simply that poor material circumstances are harmful to health; the social meaning of being poor, unemployed, socially excluded or stigmatised are also factors. As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we need to feel valued and appreciated. We need more social interaction within societies. We need friends, the feeling of being useful, and we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health. We hope that by tackling some of the material and social injustices, 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 socio-economic processes.
1. The social gradient Life expectancy is shorter and most diseases are more common further down the social ladder in each society. Health policy must tackle the social and economic determinants of health. What is known
We emphasise the need to understand how behaviour is shaped by our environment. Consistent with a social determinants of health approach, we recommend looking for ways to change our environment so that people would adopt healthier behaviours.
Poor social and economic circumstances affect health throughout life. People further down the social ladder usually run at least twice the risk of serious illness and premature death than those near the top. Nor are the effects confined to the poor: the social gradient in health runs right through society; even among middle-class office workers, lower ranking staff suffer more disease and earlier death than higher ranking staff.
Given that this publication was put together from the contributions of acknowledged experts in each field, what is striking is the extent to which
Both material and psychosocial causes contribute to these differences and their effects extend to most diseases and causes of death. The Hep C Review
Ed61
June 2008
21
feature Disadvantage has many forms and may be absolute or relative. It can include having few family assets, a poorer education during adolescence, insecure employment, being stuck in a hazardous or dead-end job, living in poor housing, trying to bring up a family in difficult circumstances and living on an inadequate retirement pension. These disadvantages tend to accumulate during life. The longer people live in stressful economic and social circumstances, the greater the physiological wear and tear they suffer, and the less likely they are to enjoy a healthy old age. Policy implications If policy fails to address these facts, it not only ignores the most powerful determinants of health standards in modern societies, it also ignores one of the most important social justice issues facing modern societies. Life contains a series of critical transitions: emotional and material changes in early childhood, the move from primary to secondary education, starting work, leaving home, starting a family, changing jobs, facing possible redundancy, and eventual retirement. At each of these critical transitions, people’s health can be affected positively or negatively depending on their experience of the situation. Because people who have been disadvantaged in the past are at greatest risk in each subsequent transition, welfare policies need to provide not only safety nets, but also springboards to offset earlier disadvantage. Good health involves reducing levels of educational failure, reducing insecurity and unemployment and improving housing standards. Societies that enable all citizens to play a full and useful role in social, economic and cultural life, will be healthier than societies where people face insecurity, exclusion and deprivation. • Abridged from Social Determinants of Health: The Solid Facts (second edition) World Health Organisation 2003. Over several of the following editions of The Hep C Review, we will feature the remaining nine topics that underpin the Social Determinants of Health.
Type 2 diabe just diagnos
Having hep C puts you at increased risk of developing threats that accompany diabetes. This article from Hea
Y
our doctor looks at you and says: “Your results have come back from your oral glucose tolerance test, it confirms that you have type 2 diabetes.” You’re thinking, “Hang on! Isn’t type 2 diabetes an ‘old person’s disease?’ I still feel young. How could this have happened to me? I eat reasonably well – I still do some exercise. Why is my doctor telling me this horrible news?” My suggestion is don’t panic. Okay, this is a very important diagnosis – and yes, you are going to have to take this seriously. On the other hand you have probably had blood glucose levels in the range for people with diabetes for some time – months or even years. (That’s the sneaky thing about type 2 diabetes – you can have it for ages without realising it.) But this also means that you don’t have to change everything overnight. You have some time to find out what you are dealing with and what you need to do. The fact that you have looked after your health to some extent has probably delayed the onset of diabetes for a number of years. So don’t feel guilty. In some respects the diagnosis doesn’t change much. You have known all along that you should eat healthy food and exercise regularly. It is now just more important. The stakes are higher. However, if you are honest with yourself, you have let things slip lately. You used to play a lot of sport. When you were younger you were very competitive, very fit. Then there was that injury and work got busy; keeping fit has dropped lower on the priority list; you have filled out around the middle; exercise has become a chore to fit into your busy schedule. Most of us are in the same boat! There is no doubt that type 2 diabetes has the potential to significantly damage your body and your health. However, much of that damage can
22 22
www.hepatitisc.org.au www.hepatitisc.org.au
feature
etes: sed and needing help
g type 2 diabetes. It is important to avoid the range of additional health althy and Heartwise discusses the diabetes diagnosis. be minimised or even avoided if you make a few positive changes and stick with them. What you do will make a difference to your future health, but it’s not what you do in the next five minutes. It’s what you do on a regular basis in the years to come that will make the difference.
How do you find your nearest diabetes educator? Contact Diabetes Australia or visit the Australian Diabetes Educators Association website (www. adea.com.au) where you will be able to search for your nearest ADEA credited Diabetes Educator.
Now is the time to find out about diabetes. Diabetes is a complex condition and our understanding of how it develops and how it should be treated has improved dramatically over recent years. It will take some time to learn how to best manage all of this, but you don’t have to do this on your own.
A diabetes educator will help you achieve the balance between taking diabetes seriously and, at the same time, still enjoying life to the full.
Diabetes educators are health professionals qualified to practice in a range of nursing and allied health disciplines. They have the current knowledge in diabetes to help you understand what you need to know and what you need to do. This is called diabetes self-management education (DSME). DSME will allow you to become the most active participant in your own health care team.
• George Barker is a credited Diabetes Educator-RN at Hornsby Ku-ring-gai Hospital. This article reprinted with thanks from Healthy & Heartwise (Vol37) www.heartwise. com.au
Even if you have had diabetes for years it is a good idea to make an appointment and learn about the latest developments in diabetes management.
Image by Dots Treats, courtesy of www.flickr.com
A diabetes educator can give you advice on travelling, new medications, blood glucose monitoring, insulin administration, what to do if you become ill and most other diabetes related issues. Nearly all hospitals have a diabetes education service. Typically these services also employ dietitians and podiatrists. Your consultation might be as part of a group or individually. Increasingly diabetes educators can be also found in private practice.
The Hep C Review
Ed61
June 2008
23
my story
Murray’s story: co
At the age of 18, I started to smoke marijuana and by the time I was 21, I smoked reasonably regularly. I lived in country NSW and dropped a few pills now and then, having the odd trip. I moved to Melbourne and met up with a few people and continued to smoke pot. My new friends were into heroin and after a few weeks they asked me if I wanted to try some. It was like a sledge hammer exploding inside of me, it was horrible and made me very ill all night, I didn’t feel well for a couple of days – I never tried it again. I continued to smoke off and on for several years. Finally I got sick of the scene – if you had it, people wanted to come around all the time – so I got over that and used to just drink. About six years ago I was diagnosed with hep C. Initially it didn’t really sink in and I didn’t do anything about it until about four years ago, when I went for tests. I have hep C, genotype 1b, and I have bridging fibrosis, which some specialists call ‘stage 3’ of liver damage. I also found out I had haemochromatosis which has also contributed to the bridging fibrosis – a double whammy as the specialist says! I went on combination treatment about two years ago and went through it reasonably well. I was very crook but it’s worth doing as there’s a good chance of being cured. My goal was to clear it and get back to a normal life. I heard that my liver can grow back to what it’s supposed to be. Unfortunately treatment didn’t work for me, so I will just wait for the next trial to happen and I’ll be very willing and happy to go on a similar trial again. My treatment went for 48 weeks and I lost 21kg. I couldn’t do much at all through the treatment. Luckily I had good support from my wife; she would take days off work to help me through it.
At the start of the treatment I was nauseous for about a month. For the rest of the time, it just made me very tired and I slept a lot through the day – some days I’d sleep for 18 hours. I ached a lot and developed a rash here and there, but every person’s treatment is different, some people don’t have any side effects at all. Towards the end of my treatment I became anaemic and had to cut back on some of my pills, but I did finish it all in the end. Other people have more side effects than I had – enough to give up – but it’s definitely worth trying it because of the ongoing benefits after the treatment has finished.
My blood tests couldn’t be any better at the moment, even though I’ve got bridging fibrosis – absolutely perfect. This is because of the treatment I went on and also because I gave up alcohol before I went on my treatment. Around the time that I was diagnosed with hep C and haemochromatosis, I had an accident at work. Owing to constant, chronic pain, I had to have a right hip replacement and a new disc put in my back. Things have never been 100% since and I’m now on daily morphine, paracetamol and Tramal, as well as a Norspan Patch that is made up of a morphine substance that I change weekly – all this to help cope with the pain. Eight years ago I moved back to a small country town in the Riverina in NSW. No regrets – just so happy now with my life and it’s going to continue that way. We have a dog that we got about five years ago. He is the best thing for company; you can talk to him whenever you want and he just listens. He was with me all the time, slept on my lap when I was in my chair and slept beside me in bed when I was crook. He was just something there to put my hand on to help me through that year and just life in general – it’s just incredible having a pet. I like bush walking and hanging out in our native garden, lying back in a comfy chair watching the birds and the clouds go by. And I am looking forward to my next hep C treatment! Murray, NSW
24
www.hepatitisc.org.au
Image by Mouse, courtesy of www.flickr.com
I
am 54 this year. I have now been living with hep C for around 30 years and this is my hep C story.
my story
oping with hep C
The Hep C Review
Ed61
June 2008
25
feature
Alcohol: what do
Alcohol is a big issue for people living with hep C but it is also a big issue for the wider Australian comm Jenny Tinworth reports on a survey of Australian attitudes to alcohol.
Key findings showed: • a third of people did not believe, or were uncertain whether, alcohol is a drug • there was a wide range of views on how many drinks constituted a ‘binge’ • only one in five people knew about the National Alcohol Guidelines which recommend safe drinking levels • most respondents believed alcohol advertising should be reviewed by an independent body before appearing in the media Dr John Herron, Chairman of the Australian National Council on Drugs which is the principal advisory body to the Federal Government on drug policy, believes it is time for urgent action. “Australia has a massive problem with alcohol, and this survey shows that the community is aware of that and concerned about it,” Herron says. “It is time for a National Discussion on Alcohol where all these issues can be put on the table to pave the way for necessary changes to the laws and policies on how alcohol is marketed and used in Australia.”
26
www.hepatitisc.org.au
“Some will suggest that changes to alcohol laws and policies are the work of wowsers. No-one is suggesting a blanket ban on alcohol, but rather a recognition that we need to address the serious social, health and economic problems that alcohol can cause.” Alcohol: the drug link Overall, 33% of respondents did not consider alcohol to be a drug. However, among younger people (aged 18-29), this opinion was significantly more popular (43%). While 95% of people believed that it was not safe to mix other drugs with alcohol, responses varied when they were asked about individual drug types. Prescription drugs were rated as ‘okay’ to mix with alcohol by 11% of respondents. Twelve per cent said cannabis or marijuana was ‘okay’ to use with alcohol. This figure rose to 19% among younger people, with males in general (15% compared to 8% of females) much more likely to support mixing alcohol and cannabis. Binge drinking While ‘binge drinking’ is not a popular term among health professionals because its meaning is vague, the phrase is often used in the media and community where it is generally accepted as drinking large amounts on any one occasion. When asked what they considered to be a session of binge drinking, respondents showed some confusion. Three out of four people believed a binge would be drinking more than five standard drinks (the equivalent of five cans of mid-strength beer) on one occasion, with one in five people thinking a drinking session was not a binge until a minimum of ten standard drinks (equal to ten cans of mid-strength beer) had been consumed.
Image courtesy of www.google.com
T
he Australian National Council on Drugs has called for national discussion on alcohol after a nationwide survey by Of Substance showed widespread community concern about the drug’s impact. Questions about binge drinking, underage use, public safety, alcohol advertising and the marketing of pre-mixed drinks to young people all generated across-the-board disquiet in the snapshot of public opinion taken in December 2007.
feature
o people think?
munity. Guidelines The survey was held shortly after publicity about proposed changes to the National Health and Medical Research Council’s National Alcohol Guidelines. When questioned, only 17% said they had ‘definitely’ heard of the Guidelines, which recommend low-risk drinking levels and define a standard drink as 10 grams of alcohol (the equivalent of one can of mid-strength beer). Another 36% ‘thought’ they had heard of the Guidelines. At the time of this edition going to press, the revised Guidelines were expected to be released in June/July, this year. Seeking help Almost one in three people (29%) didn’t know where to seek help if they, a friend or family member had a problem with alcohol. Alcoholics Anonymous was the most common place (32%) nominated for assistance, with a GP or hospital the next most popular source of help (27%). Charities, community services and telephone helplines were only nominated as sources of assistance by 8% of people. Education and advertising The survey showed a clear desire by the community for increased restrictions on alcohol advertising, coupled with more public education about alcohol issues. The advertising of alcohol products is governed by the Alcohol Beverages Advertising Code (ABAC). ABAC is a voluntary, self-regulatory convention administered by the alcohol industry. Respondents in the Of Substance survey were asked to indicate how strongly they agreed or disagreed with a statement that an independent authority should review alcohol ads before
they appeared in the media. The answer was an overwhelming ‘agree’, with 33% of people ‘strongly agreeing’ and another 44% ‘agreeing’. Only 11% of people disagreed with this statement. Support for strict controls on advertising was strong, regardless of respondents’ age or geographic location. There was strong support for national campaigns to educate the community about the dangers of excessive drinking. Three out of four people (73%) said there was not enough public education, while more than half of respondents (52%) were willing to pay an additional levy on alcohol to fund this kind of campaign. Conclusion “The impact of alcohol, and particularly of excessive drinking, is an issue that Australia can no longer afford to ignore,” ANCD Chairman John Herron says. “No-one is saying that there should be no alcohol, but we must look at the way it is consumed and the way it is promoted in our community.” “It is not acceptable that alcohol can be targeted at young people or that there isn’t any independent review of its promotion and advertising. The community is expressing genuine concern about alcohol’s impact on society and this cannot be ignored, nor can the need for increased education about the dangers of excessive drinking. It is imperative that the impact of alcohol is put firmly on the national agenda.” • Jenny Tinworth is managing editor for Of Substance. This article abridged from Of Substance (April 2008) Vol 6, No 2.
The Hep C Review
Ed61
June 2008
27
opinion
Time to intervene and put human rights first
The ACT government is failing in its first real test of the human rights compliancy and its own goals for prison management, writes Michael Moore.
A
ction is needed from the Chief Minister to prevent the spread of disease and to protect human rights in the new ACT prison. It is not too late for Jon Stanhope to pull his Health and Corrections Ministers Katy Gallagher and Simon Corbell into line. This seems the only way to enable prison needle exchange and have the Alexander Maconochie prison genuinely ‘human rights compliant.’ Without the Chief Minister’s intervention, or a change of heart from his Ministers, it will be a dismal failure. Rhetoric is not enough. The ACT government is failing on its first real test of the human rights compliancy and its own goals for prison management. It has failed to include a needle and syringe program in its health services plan for the prison. Instead, it has offered bleach and condom availability. Unfortunately, this is not enough to effectively protect the people in its charge or meet human rights compliancy. A review of the international evidence published by the World Health Organisation (WHO) indicates that bleach is not an effective intervention. The same report verifies the efficacy of needle and syringe programs. Such programs are working successfully in a series of correctional centres in 10 countries worldwide. The scientific papers that have assessed efficacy of needle exchange programs have concluded that there is no increase in use of drugs. The same papers found that the most significant benefit was that there were no HIV infections.
Bill of Rights. He has done it and now it is time for him and for his ministerial colleagues to make it work. They should not shirk this responsibility. The preamble to Stanhope’s Human Rights Act 2004 states, “Although human rights belong to all individuals, they have special significance for Indigenous people.” Unfortunately, through all Australian correctional facilities Aboriginal people are disproportionately over-represented. The Act also states “Anyone deprived of liberty must be treated with humanity and with respect for the inherent dignity of the human person.” Depriving someone of liberty and putting them in danger of contracting hep C or HIV/AIDS hardly respects human dignity! Katy Gallagher’s statement that she wanted to start the prison from the position of preventing drug use is a cop out. Allowing bleach is neither consistent with this statement, nor is it effective. It was a ministerially ‘brave’ act when the 1980s Labor Federal Health Minister, Neil Blewett, moved to legalise community needle and syringe programs. His vision, his preparedness to take a political risk and to stand up to a significant element of his own constituency is what separated him from other politicians. A study in 2002 found that needle syringe programs in Australia had reduced the number of HIV infections by 25,000 and hep C infections by 21,000.
The ACT government seems to have caved in to the conservative union that represents prison officers. What other credible explanation can there be for this failure of government to protect people from HIV and hep C?
Australia is one of the few communities internationally that stemmed the spread of HIV through adoption of harm minimisation policies – especially through the introduction of needle and syringe programs. It is time for Jon, Kathy and Simon to make as difficult a decision as the life saving one made by Neil Blewett.
Proposing to delay the issue to reconsider it in 18 months is the same tactic this government used with the safe injecting room. It should fool noone. It will not happen if it does not happen now.
• Michael Moore is a former independent member of the ACT Legislative Assembly and Minister for Health. He is CEO of the Public Health Association of Australia.
Jon Stanhope came to government with one personal agenda above all others: to establish a 28
www.hepatitisc.org.au
Abridged from Canberra City News, 20 Mar 2008.
feature
Fincol takes over the fight against hep C in NSW prisons A new disinfectant cleaning product has replaced the old bleach detergent mix for cleaning injecting, tattooing and piercing equipment in NSW prisons.
P
risoners have an alarmingly high level of hep C prevalence. Around 1% of the general public has hep C. This compares to around 40% of the 9,000 male prisoners and 60% of the 700 female prisoners in the NSW correctional system. The NSW Department of Corrective Services (DCS) spent a long time investigating a suitable replacement for the CCF5T bleach previously used across NSW prisons. Fincol – a hospital grade disinfectant, effective against bacteria, fungi and viruses – is the product that met their requirements. For several years, questions had been raised about bleach’s ability to kill the hep C virus. The search for a bleach replacement took DCS interstate and overseas. Fincol has been used in Western Australian prisons for several years. Wanting to be certain they had the best product, DCS liaised with researchers at the Centres for Disease Control in the United States. The researchers there tested Fincol against HIV, hep B and a surrogate virus for hep C and it was found to be effective against all three.
Image courtesy of www.google.com
Fincol has now been rolled out across NSW correctional centres. It is mixed with water to the recommended concentration and dispensed from specific dispensers in the same way that CCF5T was. Fincol is less toxic and corrosive than CCF5T, doesn’t deteriorate when stored in cold or hot conditions and retains its effectiveness for up to eight hours after it is mixed with water. DCS believes it is a lot more suitable for the prison environment than the previous bleach product.
There were considerable problems with the previous bleach – including deterioration in temperatures that were too hot or cold, or with exposure to air. As part of the investigative process, DCS consulted with Justice Health, the Hepatitis C Council of NSW and the AIDS Council of NSW (ACON). Although used primarily for general cleaning purposes, Fincol is also being used for disinfecting injecting, tattooing and body piercing equipment. Of course, no method of cleaning such equipment is guaranteed to be completely effective but it can reduce the risk. Transmission of hep C is seen as a serious issue within prisons and the department’s health promotion advice for prisoners involves a hierarchy of risk: 1. Safest is not to use drugs, or get tattoos or body piercings at all. 2. If you are going to use, then don’t inject. 3. If you are going to inject, then use new equipment each time and don’t share. 4. If you can’t get new equipment then clean the equipment as thoroughly as you can with Fincol (as per our centrespread poster). • Abridged from Users News (#53, p20), with assistance from the NSW Department of Corrective Services. Also see this edition’s centrespread harm reduction poster, next page, ED.
The Hep C Review
Ed61
June 2008
29
30
www.hepatitisc.org.au
The Hep C Review
Ed61
June 2008
31
opinion
Prisons, hep C and
Hep C within prisons poses public health repercussions for the whole community, writes Associate Pro
T
he Australian response to illicit drugs is directing a disproportionate burden of drugrelated illness, including hep C virus (HCV) infection, into the prison system. Not only is the prevalence of HCV high among prison entrants, but other prisoners are also at risk of contracting HCV while incarcerated. Given the mobility of prisoners between the community and prison, the public health repercussions for the whole community are potentially great. The National Drug Strategy promotes harm minimisation. In contrast, prison policies promote zero tolerance and abstinence-based treatment programs. The highly politicised industrial environment in prisons compromises the implementation of harm minimisation strategies. As an example, despite high levels of community acceptance for body art and skin piercing, a planned prison-based tattoo pilot project for Victorian prisoners has never been implemented, due to opposition from prison officers (the idea was “blasted by jail guards.”) There has been an absence of bipartisan and consensus-seeking policy development between the health and custodial sectors in Australia. Despite three national reports calling for changes to blood-borne virus prevention in Australian prisons, there is still only piecemeal implementation of harm minimisation programs. A federal government report noted that “the implementation and evaluation of prevention efforts for hep C infection in prisons have lagged behind efforts in the community.” Importantly, the document stated that “unless concerted efforts are directed towards the control of hep C transmission among prisoners, it is unlikely that the hep C epidemic in the broader community will be brought under control.” In their 2002 position paper, the Australian National Council on Drugs specifically recommended the provision of educational programs on drug use, hep C and other bloodborne infections for inmates and custodial staff and the provision of bleach for cleaning injecting equipment.
32
www.hepatitisc.org.au
The 2003 review of the 1st National Hepatitis C Strategy made the following recommendations: • That lessons learnt from harm reduction strategies in custodial settings in other countries be explored in Australia • That custodial staff be provided with training about HCV in an occupational health and safety context • That support be given to initiatives that help divert drug users away from incarceration and into non-custodial alternatives • That nationally consistent standards for education and prevention be implemented in custodial settings. Current practice Health education is the most widely employed method of preventing blood-borne viral infections. Prisoners are informed of the risks of infection and transmission, but are not provided with the means of applying this knowledge. The Australian situation is characterised by inconsistent application of harm minimisation strategies and slow adoption of successful programs between jurisdictions (Australian States and Territories). The first prison-based methadone maintenance program was initiated in NSW in 1986, the second in SA in 1999. Two initiatives that could potentially minimise the contribution prisons make to the HCV epidemic in Australia deserve consideration: the provision of sterile injecting equipment, and the establishment of professional tattoo parlours in prisons. Prison-based needle-exchange programs In 2001, 49% of female prisoners and 48% of male prisoners in NSW reported that they had used illicit drugs while in prison. Of those prisoners with a prison drug-use history, 43% of women and 24% of men had injected while in prison. The specific risks of injecting in a prison environment have been highlighted in anthropological and epidemiological studies.
opinion
harm minimisation
ofessor Michael Levy. Since 1992, several jurisdictions in other countries have introduced prison-based needle exchanges. Five of six German prison needleexchange programs were closed for local political, not operational, reasons. In 2001, a position paper supporting the exchange of injecting equipment by prisoners was developed by the peak injecting drug users’ organisation. It has not been considered by any of the eight Australian jurisdictions. At a 2005 workshop, the case for prison syringe exchange programs was made. The provision of bleach and methadone is not a sufficient response to the risk of HCV transmission via syringe sharing among prisoners. Prison syringe exchange programs reduce the risk behaviours and prevent disease transmission related to injecting drug use. They are safe for prisoners and for prison staff. They have other positive outcomes on prisoners’ health, such as increased referral to treatment services, fewer overdose events, and reduced polydrug use. Exchange programs do not increase drug use or initiation of injecting among non-injectors, they do not undermine abstinence-based programs, and are adaptable to differing prison environments using a variety of distribution methods. In January 2007, the Queensland State Coroner noted the inability of custodial authorities to keep drugs out of Queensland prisons, and consequently recommended that an injecting equipment exchange be provided to prisoners, in addition to access to pharmacotherapies. The Queensland Department of Corrective Services rejected the Coroner’s recommendations. Safe tattooing in prison The 2001 New South Wales inmate health survey reported that 60% of female prisoners and 58% of male prisoners in NSW said they had at least one tattoo. Of those with tattoos, 37% of the women and 42% of the men had at least one tattoo done in prison.
The Canadian Corrections Service initiated a pilot tattoo project in August 2005 with an understanding that regulated tattooing would implement higher infection control standards than the existing peer-run clandestine activity. The infection control standards set for the prison pilots exceeded those currently in the Canadian community, but would be consistent with Australian standards. The trial ceased in September 2006. A number of benefits were identified, including better control of tattooing equipment and enhanced education opportunities for both inmates and staff.
Conclusions As long as Australia fails to provide prison prevention programs for blood-borne viral diseases at community and international standards, our public health and human rights will both be compromised. The increasing body of evidence supporting harm-minimisation programs for prisoners may soon be tested in an Australian court, with the possibility of Australian jurisdictions being mandated to implement programs that they are poorly prepared for. The highest priority for federal and state governments is to address the inconsistencies in the way proven harm minimisation practices are applied across the eight jurisdictions. When that has been addressed, the evidence from prisonbased harm minimisation programs overseas should be applied in Australia. Our prisons will then be safer to work in, reside in, and return from. • Michael Levy is Associate Professor at the School of Public Health, Uni of Syd. Abridged from the Medical Journal of Australia 2007; 186 (12): 647-649, Michael Levy, Carla Treloar, Rodney McDonald and Norman Booker. Also see Australian National Council on Drugs Needle and Syringe Programs Position Paper (2001): www.ancd.org.au/publications/ pdf/pp_needle_syringe.pdf
The Hep C Review
Ed61
June 2008
33
feature
A tribute to Audrey Lamb
Audrey died on Thursday 6 March, following a short and very intense battle with cancer. In 2007 Hepatitis Australia interviewed Audrey Lamb and Professor Geoff Farrell about their friendship and work over 15 years. Their hard work in the early 1990s helped pave the way for the establishment of hepatitis councils across Australia. A special friendship grew, based on mutual respect and the shared value of helping others wherever they can. For many years Audrey had been experiencing tiredness, vague nausea, irregular bowel habits, and a poor functioning liver. In September 1990, Audrey was finally diagnosed with hep C. Unaware of exactly what hep C was, Audrey’s situation was made all the worse by the lack of support and knowledge in the medical community. One doctor told Audrey it was a “good thing you have antibodies in your blood – that means you’re now immune to the disease” while another said it was “a very serious disease leading to cirrhosis and possible death through liver cancer.” With her first grandchild due in December of that year, Audrey was desperate for some basic information on how this virus was transmitted, and how infectious it was, but no information or support was forthcoming. She was told to try and get an appointment to see Dr Farrell who was leading research into the hepatitis virus at that stage. Dr Geoff Farrell (now Professor) was working at that time at the Westmead Hospital in Sydney. The two decided that something needed to be done about the inadequate state of hep C information, care and support, and together they were instrumental in creating the first Australian hepatitis C support group. 34 34
www.hepatitisc.org.au www.hepatitisc.org.au
Along with others, Audrey wrote the first hep C information booklet available in Australia, coordinated a national network of volunteers from the affected communities and organised a 4,000 signature petition to the NSW Health Minister, delivered in May 1993, calling for the NSW Government to initiate an antidiscrimination focussed community awareness campaign, and for resourcing and support for the tens of thousands of people in NSW already living with hep C. An information helpline was established, but with no office space, callers were directed to Audrey’s own home, where she stayed up all hours answering calls and providing information. Geoff was always ready to provide the most recent research information and help any way he could, and so was formed a strong friendship. In the following years as that friendship grew and developed, so did the support groups, until today when hepatitis councils are established in every state and territory providing people with information, education and support services. Professor Farrell is now Director of Gastroenterology and Hepatology at The Canberra Hospital, and Professor of Hepatic Medicine at the Australian National University Medical School. Audrey Lamb was fittingly honoured during the 2007 Queen’s Birthday celebrations, receiving an OAM for service to public health and to the community. Our heartfelt condolences go to Audrey’s close and wonderful family, and our sincere thanks, respect, love and goodbyes go to Audrey Lamb, the strong, forthright woman who placed hep C so firmly on the Australian map. • Abridged from www.hepatitisaustralia.com
Image courtesy of www.google.com
O
n Thursday 6 March 2008 we lost a true champion of the hepatitis community in Australia: Audrey Lamb, founding President and Life Member of the Hepatitis C Council of NSW and recent recipient of the Order of the Medal of Australia for her work on behalf of the communities in Australia affected by hep C. Her wisdom, passion and vision shaped the nature of the hepatitis community sector.
feature
Enjoy better health: preventing fatigue
Never mind that fatigue is the most commonly reported symptom of hep C, it is also one of the most common health complaints for the general community, reports Dr Vivienne Miller.
I
classify fatigue into three groups when I see a patient with this problem: understandable fatigue (usually lifestyle factors); fatigue that suggests a medical cause is likely; and the middle group, in whom it is not clear. This classification works well as a screening test.
Certainly, regular exercise gives you more stamina for the rest of the day and decreases the likelihood of shoulder tension, headaches and backache. It is vital for overall health, and most people who do have a hectic lifestyle cope with stress by exercising vigorously daily.
If a person feels that their fatigue is not normal, if there have been medical problems or if medications are being taken, if the feeling doesn’t recover after resting or if there are additional warning signs (such as weight loss, fever, loss of appetite, sleep disturbance, cough or other symptoms), it is important to seek medical advice.
Equally important is eating regularly during the day, starting with breakfast, as low blood glucose levels cause tiredness. Women need to ensure a good oral intake of iron (from meat, supplements or carefully balanced vegetarian meals) to prevent anaemia. Drink at least one litre of water a day (plus other drinks), and avoid having more than two percolated or three instant cups of coffee daily. Do not drink coffee after 4pm as it may affect your sleep. Do not regularly drink alcohol as it is habit forming – have at least two alcohol-free days a week and always restrict yourself to one standard glass of wine (100mL) or spirits (30mL) daily if you are female. If you are male, you may double this amount.
If fatigue lessens with increased rest after a difficult time, it was probably due to a large workload or doing too much. For those who regularly have this problem, there are some things that may decrease fatigue. Firstly, reassess what your main goal is, bearing in mind your hectic lifestyle. How much of it is really necessary? Is it worth the physical and mental toll? Are there things that can be modified to decrease workload? Are there relationship problems or illnesses in yourself or those close to you that may be contributing to, or, are worsened by the fatigue? If financial reasons are behind the exhausting lifestyle, think seriously of ways of reducing this burden.
Image courtesy of www.google.com
Most common causes of fatigue are due to early mornings or late nights, doing a lot during the day and/or poor quality or quantity of sleep at night. As we age, we naturally find that doing a lot requires more energy. When all these factors become draining, people complain of fatigue. If they feel they are not coping well, or that things are becoming beyond their control, they also complain of stress. This is related to the development of chronic anxiety and depression. There are things one can do that will decrease fatigue (and potentially stress), during the day. Exercising after a light breakfast before work is a good boost for those who find this possible; not everyone is an early riser – certainly not me!
If you have a sedentary job, have a few minutes’ break every hour; stretch your muscles and focus into the distance to prevent eyestrain. You should have a longer break every 2-4 hours. If you can, plan a siesta in the afternoon or alter work so you can sleep in late. These are marvellous ways of being able to do more in the afternoon and evening. Aim to go to sleep at a regular time each night and do not watch television within an hour of bed. Don’t exercise in the evening. The final advice is that your GP should always be consulted if you or anyone around you feels that the fatigue you are experiencing has been going on ‘too long’ or is not ‘normal’. Healthy life is a balance of relaxation, exercise, nutrition and work and fatigue is a warning sign, even if it is ‘only’ due to lifestyle. • Dr Vivienne Miller is a practicing GP and health writer. This article reprinted with thanks from Healthy & Heartwise (Vol37) www.heartwise.com.au
The Hep C Review
Ed61
June 2008
35
feature
Occupational therapy and hep C Occupational therapy students introduce the emerging role of occupational therapy for people living with hep C.
What is occupational therapy (OT)? Occupational therapy is defined as the treatment of physical and psychiatric conditions through activities that help people reach their maximum level of functioning and independence in all aspects of daily lives (Hagedorn, 1995, p.17). Occupational therapists aim to enable people to perform daily life activities to the satisfaction of self and significant others, and help adapt the environment to enable individuals to perform daily life activities. Life changes as a result of hep C infection Psychosocial and psychological changes experienced by people with hep C include: Perceived condemnation – People feel they have been sentenced to a future that includes illness, disease, loss, stigma and premature death. Fear of the unknown – People often have limited knowledge of the condition prior to the diagnosis which can lead to misconceptions about what the diagnosis may bring into their future. Loss of social supports – It was found that people with hep C have an increased need for emotional support because isolation and loss of social support network are common consequences of the diagnosis. Perceived loss of life opportunities – There is a feeling of loss due to changes in health, routine, and even vision of the future. People may feel that they are unable to build a family and career, and that they will be treated with prejudice. This is particularly relevant in terms of vocational opportunities. Stigma – The community often forms negative assumptions about people with hep C. These assumptions may have originated from ignorance about hep C and association of the disease with injecting drug use.
36
www.hepatitisc.org.au
Depression – Diagnosis may lead to a feeling of hopelessness about coping with the negative lifestyle changes. As a consequence, with some people, the diagnosis may result in depression. So how can occupational therapists help? There has been limited occupational therapy involvement in the management of lifestyle changes for people with hep C and it is an emerging field of practice. Occupational therapy includes a range of interventions: education on disease process; anger and stress management; relaxation techniques; exploration of role changes; development of social support networks; establishing links to community resources; exploring vocational roles; developing time management skills; conducting an environmental assessment; advocacy on behalf of the clients in gaining social support; individual and group therapy to reduce anxiety and promote a healthy outlook on life; and health promotion including diet and exercise. Conclusion Every year, a significant number of people are being diagnosed with hep C – which has a significant impact on quality of life. The role of occupational therapy for people with hep C is an emerging field of practice. Further research is thus encouraged to explore this new and exciting field of practice with regards to the role of occupational therapy for people living with hep C. • Yochi Ananto, Mellishia Hoondal, Andrea Huang, Anna Kim and Joanne Wong are OT students at the University of Sydney.
Image courtesy of www.google.com
A
hep C diagnosis can significantly impact on people, including effects of psychosocial, psychological, and physiological stress. Physiological stress usually manifests 10-20 years after the initial infection and in this article, we focus on the more immediate psychological and psychosocial impacts following diagnosis.
promotions feature ilbijerri theatre presents a Blak comedy you can’t liver without…
CHOPPED LIVER In 2005, Ilbijerri Theatre Company teamed up with the Victorian Department of Human Services, the Victorian Aboriginal Community Controlled Health Organisation, and Hepatitis C Victoria to develop a play that would communicate hep C prevention and education messages to Aboriginal communities. The result was Chopped Liver, which has gone on to tour to over fifty communities and prisons in Victoria and South Australia over the last two years. With continually growing interest, Ilbijerri is touring
Image courtesy of www.ilbijerri.org.au
NSW, Victoria, South Australia, Tasmania and Western Australia on it’s biggest tour yet. Told through the stories of Lynne (Melodie Reynolds) and Jim (Isaac Drandich), the play uses comedy to humanise the experience of hep C and to break down social boundaries surrounding the virus, raising awareness and opening opportunities for discussion, prevention and support. It’s about knowing that people with hep C are so much more than ‘Chopped Liver’.
FREE PERFORMANCES NSW tour 16 June to 18 July For more information, phone the Hep C Helpline on freecall 1800 803 990
www.ilbijerri.org.au/
Hep C – a snapshot of the issues for Aboriginal people • In Aboriginal communities, hep C is found at more than twice the rate as for the wider community [Estimates and Projections 2006].
• Hep C treatment needs to be flexible. Many Aboriginal people think of hospitals as the ‘sick’ place rather than a healing place.
• Trust is a key element for healthcare workers in engaging with Aboriginal people. Relationship building with Indigenous organisations, communities and individuals is crucial and it takes time.
• Aboriginal people who inject drugs are marginalised and shamed within their own communities. Hep C is associated with injecting and it carries stigma.
• In general, Aboriginal people are not aware that there is treatment for hep C. • Aboriginal people are over-represented in prisons. In NSW, Aboriginal people make up around 2.2% of the general population, but they represent 20% of the male and 32% of the female prison population (DCS, 2007).
• A question of priority. With the many health issues potentially affecting Aboriginal people, and the comparatively lower life expectancy, hep C is often not a priority. Peter Waples-Crowe, Victorian Aboriginal Community Controlled Health Organisation (VACCHO).
The Hep C Review
Ed61
June 2008
37
my story
Surviving unscathed: Sim
A few months’ experimentation with drugs in my early 20s had probably exposed me to the virus. I had thought I’d been fairly careful and as this was over 20 years ago, I had thought I’d got away without any serious consequences of that brief, but now apparently significant, episode in my life. Even now, I’m still not convinced that this is the way that I contracted the virus. There is no way of telling how long since initial infection though, and I have learnt not to dwell too much on the source of the infection. As for ‘what to do next’, there was never any real doubt about undergoing treatment. As soon as I was diagnosed, the questions I asked were about treatment. I was initially told I would have to wait about six months for the chance to start treatment, which at the time seemed an eternity. However, this turned out to be an underestimation by the clinic staff and it eventually took two years. The long wait was primarily due to my refusal to undergo a liver biopsy, something I considered to be an unnecessary and potentially dangerous medical procedure. I found out a few weeks after diagnosis that I was genotype 1a. A fairly devastating discovery as I was fully aware that genotype is the primary indicator of treatment success, and this wasn’t good. Additionally it meant nearly a year’s worth of treatment. Soon after, I got a viral load result; this was in the millions and not a good result, this being the second strongest indicator of treatment success. Add to this gender (wrong one), length of time of infection (too long) and age (too old). Things weren’t looking too good. However, I realised that all these factors were things that I couldn’t change and that I should only concentrate on things that I could change and aim to push those statistics up again. The 38
www.hepatitisc.org.au
stats for someone in my position I calculated at about 40%. By careful preparation, I thought I could push this to 50% and, given the success rate at the clinic where I was being treated, maybe push this higher, possibly up to 60%. Things weren’t all that bad; there was some good news. The liver function tests were nearly all in the normal range, the exception being the GGT (an enzyme that is produced in the bile ducts) which was just above normal. An ultrasound scan showed no abnormalities, so the chances of having a cirrhotic liver were probably very low. I have always had a fairly good diet and never been a heavy drinker so I was confident that there was minimal liver damage, which would increase the chances of treatment success. The factors that I could do something about – in increasing my chances of success – would be in the preparation for the year ahead. My aim was to be in the best mental and physical condition that I could achieve, and then to maintain that to keep the chances of success as high as possible. In other words, I was determined that, if my physiology would allow it, this treatment was going to work. I decided to try and enjoy the year as much as I could, to treat it as a year off, almost like a long holiday. I was lucky in that I could claim state benefits so that I would not have to work and could take time to look after myself and indulge myself in activities that I enjoyed. Having a positive attitude to treatment is, I believe, vital to getting through treatment and increasing success rate. One of the things that I liked about my treatment clinic was that they shared this view. Since being diagnosed I had access to a social worker who, while not always agreeing with me, did give me good advice and challenged me to think about what I was doing and therefore helped me achieve and maintain a positive outlook on things. I also had access to a psychologist throughout the treatment to help with strategies to overcome negativity, low moods and other problems. There were other factors that helped in maintaining a positive attitude: firstly I was lucky that I did not have any major depression
Image courtesy of www.google.com
I
was diagnosed with HCV just over three years ago as part of a routine check at a sexual health clinic. The result came as a complete shock. I can still hear those words the doctor spoke as he became the central character in one of those thankfully rare life changing moments: “there seems to be a problem with one of your results.”
mon’s treatment story problems or other mental health problems that a lot of people have to cope with on treatment. Also I had a told a couple of friends about what I was going through and they were very supportive. Generally I didn’t tell friends and family simply because they didn’t need to know and their ignorance of what I was going through helped me to maintain a sense of normality; I found that this stopped me focusing too deeply on the treatment experience. The clinic staff were very supportive – not only the treatment nurses and consultants, but the admin staff and ‘blood’ nurses were also very helpful. I used to actually enjoy visiting the clinic; it was as if I had acquired an extended family. This was particularly beneficial to me, as I was in the clinic at least once a week, partly due to my neutrophils count dropping to levels that were causing concern. To stay as fit as I could, I increased my involvement with a local walking club. It was not only the exercise that was important but the achievement of being able to walk regularly eight to 12 miles every week, despite being on treatment gave me a psychological boost. The walking group has a very active, social aspect to it which I took an increasingly active part in.
my story
Meeting new people and doing new things turned out to be a central theme of my treatment experience. Another source of exercise was involvement with railway heritage. Before treatment began I was training to be a fireman on a local heritage steam railway. Unfortunately this was one of the few things I had to give up. I did go regularly to help with the cleaning and maintenance of steam locomotives and still got out on the footplate on various occasions. I was not strong enough to be able to finish the training and qualify as a fireman; this is just about the only regret I have about treatment. For most of the treatment year I was regularly visiting a sauna and steam room at my local sports centre, partly as this was very relaxing but also as I thought it might stimulate the lymphatic system to expel the virus that can be found there. I have spoken to other people who have found saunas too much when on treatment, but I had no problem with them and found them extremely beneficial. I was not completely free from side effects; I was very tired at times but rarely had to spend time in bed resting. I ensured that I had plenty of rest by learning to get this where I could, for example relaxing on the train or sitting in a coffee bar reading a book, or even a quick snooze while waiting to see my treatment nurse.
The The Hep Hep CC Review Review
Ed61 Ed61
June June 2008 2008
39 39
my story promotions I was lucky in not suffering any serious side effects following the Interferon injections, although I did tend to take them before going to bed, just in case. I did become very breathless due to anaemia and this was probably the worst part of the treatment. I had to be careful when out walking that there weren’t any serious hills to climb, as I could have problems ascending. I did occasionally suffer from ‘riba rage’, but kept it under control and managed to direct it to people who deserved it! Other side effects were itchiness and rashes, which were annoying but not serious, and I also tended to be easily confused and had problems concentrating. Again, not serious but annoying. I did, however, go back to college to complete a certificate in counselling. This was very therapeutic, as I confided in the other students on the course what I was going through and it was helpful to check in every week and have the chance to discuss issues outside of the clinic. The only serious side effect problem was that my neutrophils dropped to a level where I had to take an additional drug to boost these. This meant another injection each week, which seemed to make the breathlessness slightly worse but luckily nothing more serious. After 48 weeks, I was relieved that it was all over. I had survived relatively unscathed, but there was a slight feeling of sadness in that I would not be in regular contact with the people at the clinic who cared for me. Their professionalism and dedication has been inspirational and I owe them a huge debt of gratitude. I feel that the time on treatment has taught me things about myself and overall it has actually been a positive experience that will help me in the future. I don’t yet know if this has worked; I will have a test in a few weeks’ time to determine the outcome. I really hope it’s good news and I can put this episode behind me. However, if the news isn’t good then I have no major anxieties about trying new treatment options in the future, as I have shown that I should be able to tolerate them and hopefully turn them into positive experiences. But I hope it has worked and I can direct my energies to other enterprises! Simon, NSW
40 40
www.hepatitisc.org.au www.hepatitisc.org.au
Have you finished treatment for hep C?
If you completed hep C treatment at least six months ago, we would like to talk to you about your experience of life after treatment. • Interviews last for about an hour. • Please contact Max on 9385 6436 or nchsr@unsw.edu.au to arrange an interview. This is a research project of the National Centre in HIV Social Research, The University of New South Wales.
101 things your GP should tell you Dr Gillian Deakin, Random House Australia (rrp $34.95) Dr Gillian’s thought provoking book is a very useful guide for people who want to communicate effectively with medical professionals. There are practical tips on how to choose the right professional and how to help your doctor help you. It also discusses how to deal with hospitals, specialists, and making tough decisions. • This article reprinted with thanks from Healthy & Heartwise (Vol37) www. heartwise.com.au
promotions
What do you do for a living? (working with chronic hep C)
Nadine Krejci writes about a research program that explores the work experience of people living with hep C.
P
aid employment is perhaps the most persistent and constant demand of adult life. Paid work gives us a materialistic standard of living and influences other life opportunities. Work also provides many of us with our primary sense of identity.
With an expected increase in Australia’s hep C-related burden in the coming years – approximately 500,000 by 2020, depending on future patterns of injecting drug use – this study will contribute to implications for policy, advocacy and service provision.
Those living with chronic hep C in Australia are predominantly working-age people with a history of injecting drug use. Not surprisingly, employment has been identified as a problematic area of daily life for people living with this chronic illness.
If you are interested in taking part in this project and live in the Wollongong/Illawarra region of NSW, please contact Nadine on: ph/sms: 0431 979 039 email: nadine.krejci@student.unsw.edu.au
Hep C symptoms, treatment side-effects, stigma and discrimination can all have an impact on work. Little research however, pays attention to the work lives of people living with chronic hep C.
•
Nadine Krejci is a post graduate student at the National Centre in HIV Social Research. NB: Nadine’s research previously targeted people in the Hunter region of NSW, but now focuses on the Illawarra region.
If you live in the Illawarra Region of NSW, we would like you to help us with a research project exploring the employment experiences of people living with chronic hep C. Participation involves a confidential interview lasting about an hour at a place and time convenient to you.
Image courtesy of www.google.com
The research project is being run through the University of New South Wales and is being undertaken as part of a Masters degree by researcher, Nadine Krejci. Nadine lives in the Hunter Region and is supervised by Associate Professor Carla Treloar (National Centre in HIV Social Research) and Dr Tony Eardley (Social Policy Research Centre).
The Hep C Review
Ed61
June 2008
41
feature
Hello, I have been on the hep C treatment and just received my six month post treatment PCR test. It turns out I did not clear the virus. I can’t believe it, after a whole year of terrible side effects! I feel angry and emotional that I still have hep C. Why me? What can I do? Most people start hep C treatment with the hope that the outcome will be favourable. It can be a massive disappointment to hear the words “you are still hep C positive.” Hearing that you still have hep C after you have spent anywhere from 12 to 48 weeks (and sometimes longer) coping with uncomfortable side effects can be very difficult. If you are given these results while still taking medication or recently after you completed treatment, you may be still experiencing side effects. This can leave you even more vulnerable to the impact of this information. It is reasonable to have an emotional reaction if the outcome does not turn out the way you had hoped. Some common reactions people report when they are told that treatment did not work are depression, guilt, blame, anger, anxiety, fear, denial, sadness and/or grief. Although it might not be easy at first, try to focus on the positive aspects of going through treatment. Your liver may be healthier than it was before treatment. Combination therapy may have slowed the progression of liver fibrosis. Some people report that after side effects have worn off, they feel noticeably better than they did prior to treatment. Also consider that there is a benefit to knowing that you made the effort. You did not waste your time. If you had not tried hep C treatment, the future might have had a different outcome. By making the effort now, perhaps you have avoided future regret. ‘Hello Hep C Helpline’ is brought to you by the Hep C Helpline team. The questions are based on genuine calls, however some details have been changed to ensure caller anonymity. 42
www.hepatitisc.org.au
Do not just expect yourself to bounce back immediately from treatment. Acknowledge the feelings attached to the disappointment, but don’t dwell on them. Be patient and generous with yourself. Be proud of yourself, as it takes courage to go through treatment. The outcome of your treatment may mean you have to make choices and changes. Start by talking to your health care providers about your health and the future. Are there any specific recommendations to consider, such as medications or lifestyle changes? Are there any available clinical trials you could join? How do you best look after yourself from here? As you recover from your treatment journey, it is important to look after yourself. Take up moderate exercise and maintain a healthy diet. Get adequate sleep and reduce stress (e.g. through yoga, meditation, tai chi). Many people choose to manage hep C symptoms with complementary therapies. Avoid isolation by seeking support and talking about what’s bothering you. Stay informed about hep C and your health. If you are experiencing difficulty moving on after treatment, talking through your concerns with a staff member on the Hep C Helpline may be useful. We will be able to refer you to more support, should you need it. We can also send you resources to help get you back on track after treatment, and to help manage your physical and mental health. •
Hep C Helpline
promotions
Access All Areas
This DVD is an information resource for injecting drug users, especially heroin users. It aims to explain drug treatment options as well as the treatment of other drug-related health problems such as dental care, hepatitis and overdose. The DVD may be useful for health care professionals or others who work with people who use drugs, and may also be used as an aid to teaching clinical students. Access All Areas may also be of interest to family members and carers of people who use drugs, helping them get a better understanding of what treatment is, how it works, and how to get the most out of it. To obtain free copies of the DVD, please contact: phd@nationalmailing.com.au or 1800 020 103 (ext 8654) or visit www.alcohol.gov.au The Hep C Helpline also has free copies to give away. Call 1800 803 990
National Hepatitis C Needs Assessment
T
he National Hepatitis C Needs Assessment 2008 aims to gather information on the education, information and support needs of people living with hepatitis C. The results will help in guiding the delivery of education and support services through Hepatitis Councils and other community organisations throughout Australia. Focus group discussions are being held throughout Australia in June 2008. In addition, telephone interviews will be conducted with people living with hep C. An on-line questionnaire is available via the Hepatitis Australia website: www. hepatitisaustralia.com. A hard copy version of the questionnaire is available from the Hepatitis Council in your state or territory.
Hepatitis Australia encourages you to participate in the needs assessment and share your views about the delivery of hep C information, education and support programs. In order to provide the most relevant, appropriate and targeted services for people living with hep C, we need to know how you want to receive hep C information and support, what sources you have found useful and what you think are the best strategies to provide hep C information, education and support. If you would like to participate in the Needs Assessment (interview or questionnaire) or would like more information please contact Jacqui Richmond, the Needs Assessment Project Officer via: Jacqui.Richmond@svhm.org.au 03 9288 3586
The Hep C Review
Ed61
June 2008
43
promotions
Image by Danielle Elston
An historical perspective .. taken from Edition 01, May 1992. “We have had an excellent response to publicity, and the number of telephone calls received indicate a genuine need for a our group. Despite a few hiccups with our answering system, there have been an overwhelming number of requests. In the past two months, two television programs have shown segments about hep C. NSW viewers were shown a two-part story on Channel 9’s Sydney Extra. This was followed by the ABC’s Seven Thirty Report. The latter was national and prompted enquiries from interstate as well as many local calls. Yes, we are now Australia-wide (or perhaps even international, if you consider an enquiry from Malaysia)! Hep C has been discussed on radio in Brisbane, Canberra, Adelaide and Perth. Articles have appeared in the Western Suburbs Courier, Wentworth Courier, Weekly Southern Courier, Western Courier, The Manly Daily and La Fiamma.” • HCCNSW (May 1992) 44
www.hepatitisc.org.au
Call for hep C study volunteers The Storr Liver Unit at Westmead Hospital is recruiting people with hep C to take part in a study looking at genetic factors of response to combination antiviral therapy. You should: • Previously or currently have genotype 1 chronic hep C infection. • Previously have completed combination therapy with interferon and ribavirin therapy, IRRESPECTIVE of treatment outcome. There is only one visit, which takes less than 30 minutes and involves the collection of a sample of blood. Please call Dr Vijay Suppiah on 9845 6749 for more information. • This project has been approved by the Sydney West Area Health Service Human Research Ethics Committee.
membership matters You are vital to us – We are here for You Membership renewals for 2008 are now overdue All categories of membership were due for renewal on 1 March…so please don’t delay…renew today. You can do this online via our secure payment facility at www.hepatitisc.org.au or by mail or fax. We’re easy to please with credit card, cheque or money order! Organisational or professional members – please quote your invoice number when renewing. We happily supply receipts on request. Please remember that people in severe financial hardship can remain financial members by ticking the ‘Zero fee’ box on the membership/renewal application form. In order to remain a financial member, you still need to complete and sign and return the form to us, even if you are a ‘Zero fee’ member, or tick the declaration agreement box if you use the online facility. Are You Healthy & Heartwise? Don’t miss your free bonus magazine: Healthy & Heartwise – Your Guide to Wellbeing, exclusive to members. Watch for it in the letterbox with your copy of Member News. 6TH AUSTRALASIAN CONFERENCE ON VIRAL HEPATITIS – BRISBANE MONDAY 20 – WEDNESDAY 22 OCTOBER 2008 One of the benefits of NSW-based people with or affected by hepatitis C remaining financial members of the Council is that you stand the chance of winning one of two scholarships to take part in the 6th Australasian Conference on Viral Hepatitis in Brisbane, Qld. Please see your copy of Member News for details.
Hep C treatment promo resources
T
his new and exciting resource set includes a series of six easy-read postcards that aim to raise the awareness of hep C treatment across NSW. The six themes portrayed through a casual conversation approach are:
To order supplies of the promotional set, phone the Hep C Helpline on 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) or download a resources order form from www.hepatitisc.org.au/resources.html •
HCCNSW
• hep C treatment exists • support is available • hep C treatment is available in prison • people who inject drugs can access treatment • the cost is minimal • liver biopsy is no longer required to be eligible for treatment. The postcards will be accompanied by matching A3 posters and small stickers.
The Hep C Review
Ed61
June 2008
45
promotions Are you currently on treatment for hep C? Have you recently been on treatment for hep C? Do you have family or friends providing you with support? Would you like to see improved services for support people? We are looking for volunteers to complete a brief survey. Sydney South West Area Health Service is recruiting people on hep C treatment, and their support people, to complete a brief survey on support needs. We will use the information gathered to improve our services for people who are providing support to someone on hep C treatment. We are looking for: • People who have been on hep C antiviral treatment for at least 8 weeks, or completed treatment no more than 3 months ago, and live in Sydney’s inner west. • A family member, partner, friend or other support person who is providing/has provided practical, emotional or other support to the person on treatment.
The surveys are around 12 pages long and take 15-20 minutes to complete. We will post surveys for you and your support person to complete and return to us by prepaid post. All surveys are confidential and the information will help us develop resources or services to assist family members or friends who are providing support to people on hep C treatment. You will be reimbursed for your time. Please call Scott Rutter, Hepatitis C Health Promotion Officer – SSWAHS (Inner West) on 9515 5293 for more information. This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney South West Area Health Service.
To organise a time to speak to a volunteer phone
9332 1599 (Sydney) 1800 803 990 (Freecall NSW regional) 46
www.hepatitisc.org.au
halc
legal centre is now able to offer free help with hep C legal issues
HALC is an accredited community legal centre that provides free advocacy and advice. Our solicitors understand the unique legal needs of people living with hep C. We frequently provide assistance in the following areas: • Immigration • Discrimination and vilification • Superannuation, insurance and employment • Privacy and Health Care Complaints • Enduring Power of Attorney and Enduring Guardianship. When advocating on your behalf we understand the importance of confidentiality and practise discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060
Retreat for Aboriginal people living with hep C
promotions
ONLINE & CONNECTED ONLINE FORUM The Australasian online internet support forum Hep C Australasia provides a secure and supportive environment for people affected by hep C. Here, you will find conversation threads, chat room, blogs, private messaging and more.
http://hepcaustralasia.org COUNCIL WEBSITE The Hepatitis C Council of NSW website is internationally accredited and contains a wide range of hep C related information. Our quarterly magazine, The Hep C Review, is fully accessible with over 10 years worth of editions downloadable as PDFs.
Sydney South West and South Eastern Sydney Illawarra Area Health Services are organising a retreat for Aboriginal people living with hep C and who are considering treatment options. In a safe and culturally sensitive environment, the retreat will focus on delivering hep C information and education through key educators including clinicians, alternative treatment specialists and nutritionists.
In addition to detailed downloadable factsheets, the site features search functions and an email ‘Your Questions Answered’ facility.
It will run over two days in November 2008 at the Aboriginal Women’s Healing House in Picton. Participants will have the option of staying over or attending each day individually.
All hep C info resources frequently used in NSW are viewable as PDFs and the site carries research news and reports.
• For more information, please contact Anna McGowan on 9515 5292.
www.hepatitisc.org.au
The Hep C Review
Ed61
June 2008
47
promotions
hep C bookmarks O
ur hep C bookmarks (below) have proved to be a great way to promote better hep C awareness within the general community. Close to 250,000 have been distributed across NSW via many public and private schools, public libraries, TAFE and university libraries and commercial book stores. Can you help with further distributing the bookmarks? Ideas include: • Taking them to doctors’ surgeries in your area. • Taking them to your local library (to see whether it is a participating library). • Taking them to your local community centre. If you are able to help, we can supply as many bookmarks as you need. Just go to our website and download one of our resources order forms, or phone the Hep C Helpline (on 1800 803 990). • HCCNSW
The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver into someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time. It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Lifelink, the NSW/ACT network that coordinates organ donation.
Please phone 02 9229 4003.
Hepatitis B: what you need to know Two billion people worldwide have been exposed to hep B and up to 160,000 people in Australia have chronic hep B – an infection which can cause damage to the liver. Produced by the Hepatitis Council of QLD and Hepatitis Australia, this new booklet provides simple informative answers to the frequently asked questions about hep B. To view the booklet, go to www.hepatitisc.org. au/resources/documents/ HepB.pdf To obtain copies of the booklet, phone the Hep C Helpline (on 1800 803 990). • HCCNSW
48 48
www.hepatitisc.org.au www.hepatitisc.org.au
The Hep C Review
Ed61
June 2008
49
research update Treatment safe and effective for kids
New evidence links kava to liver damage
Spain – Treatment with pegylated interferon plus ribavirin results in virologic control in children with chronic hep C and is “reasonably welltolerated,” a Spanish team reports in the February issue of The Pediatric Infectious Disease Journal.
Australia – Serious concerns about the dangers of kava and the effects on the liver have resulted in Australia’s Therapeutic Goods Administration restricting the sale of kava and kava products.
Investigators at Children’s University Hospital ‘La Paz’ in Madrid, Spain, studied 30 children between three and 16 years of age with detectable HCV RNA, elevated ALT values and disease duration of more than three years. Children received PEG-IFN-alpha-2b, 1.0 mcg/kg weekly, plus ribavirin, 15 mg/kg daily. Children with HCV genotype 2/3 received 24 weeks of treatment. Those with genotype 1/4 received 48 weeks of combination therapy. Sustained virologic response occurred in 50% of children, Dr. Paloma Jara and colleagues report. After 12 weeks of treatment, 52% of patients were HCV RNA negative and 72% had a more than 2 log10 decrease in viral load over baseline. The investigators concluded that the combination of ribavirin and PEG-IFN-alpha-2b is effective for children with chronic HCV infection and results in a sustained viral response in the majority of patients treated. Viral response at 12 weeks is a predictor of future response. Studies are now needed to determine the optimum combination treatment regimen for children with chronic HCV infection, Dr. Jara’s team concludes. Pediatr Infect Dis J 2008;27:142-148. • Abridged from www.medscape.com via www.hcvadvocate.org
This study by the University of Sydney focused on the major ingredient in kava believed to affect the liver – kavain – and investigated the effects it had on the biological structure of the liver. This required the use of electron microscopes (which enable the examination of the interior of cells), provided by the Australian Key Centre for Microscopy and Microanalysis at the University of Sydney. The study found that following kavain treatment the liver tissue displayed an overall change in structure, including the narrowing of blood vessels, the constriction of blood vessel passages and the retraction of the cellular lining. Interestingly, kavain also adversely affected certain cells which function in the destruction of foreign antigens (such as bacteria and viruses), which make up part of the body’s immune system. Additional investigations into the effects of other major kavalactones on the liver, as well as studies on whether the effects of kava are reversible, are urgently needed. Fu S, et. al. Influence of kavain on hepatic ultrastructure. World J Gastroenterol 2008; 14(4): 541-546 • Abridged from www.eurekalert.org via www. hcvadvocate.org
In previous readership surveys, many people said that they wanted detailed information on hep C. These ‘research update’ pages attempt to meet this need. Individual articles may sometimes appear to contradict current knowledge but such studies are part of overall scientific debate. They help broaden our overall knowledge and help develop consensus opinion on a particular research topic. The following articles have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). ED
50
www.hepatitisc.org.au
research update Long-term hep B outlook often good
Standard hep B treatment bested by newcomer
Italy – The majority of Caucasian patients who are hepatitis B e antigen (HBeAg) positive become inactive carriers over time, Italian researchers report.
China – New research by Chinese scientists suggests that a newer medication known as telbivudine (Tyzeka, Sebivo) is more effective for treating hep B than the standard treatment, lamivudine. They also found that a smaller number of people developed resistance to the newer drug.
In the January issue of Gut, Dr Giovanna Fattovich of the University of Verona and colleagues noted that studies conducted in Asian populations suggested high liver-associated morbidity and mortality in people with chronic hepatitis B, and thus further evaluation of the long-term outlook in Caucasians is required. The researchers examined data on 70 patients with HBeAg-positive hep B who were followed for a median of 25 years. In all, 61 patients (87%) underwent spontaneous HBeAg seroconversion. During a median of 22.8 years after seroconversion, 40 (66%) became inactive carriers. Liver-related deaths occurred in 11 patients, five due to hepatocellular carcinoma and six because of liver failure. Overall, the cumulative probability of survival was 90% at 10 years and 86% at 25 years. The 25-year probability of survival was 95% in inactive carriers, 50% in patients with HBeAgnegative hepatitis or HBeAg reversion, and 40% in those who were persistently HBeAg positive. Summing up, Dr Fattovich told Reuters Health that “most patients with HBeAg seroconversion became inactive carriers with a very good prognosis.” The risk of liver-related mortality, she added, “is strongly related to sustained disease activity and an ongoing high level of hepatitis B virus replication, independently of HBeAg status.” Fattovich G, et. al. Long-term outcome of chronic hepatitis B in Caucasian patients: mortality after 25 years. Gut 2008;57:84-89. • Abridged from a Reuters news item, 18 Jan 2008. For explanation of hep B infection phases, and whether there is such a thing as a healthy hep B carrier, see p17. ED
The study found that about 8% more people responded to telbivudine than lamivudine, and the risk of resistance was at least halved for people taking telbivudine. The goal of treatment is to keep levels of the hep B virus as low as possible. Even if hep B levels become so low that they’re undetectable, long-term treatment is still required to prevent recurrence. While there are several treatment options available to suppress the virus, one problem is that people can develop resistance to these drugs. The current study looked at how effective telbivudine is compared to the standard first-line treatment, lamivudine. According to the study’s authors, both medications have a similar side effect profile, and no significant differences were found among the volunteers in the current study. “Telbivudine seems to work and is safe. It seems to have shown a better therapeutic and histological response,” said Dr Marc Siegel, an internist at New York University Medical Centre. “It decreases the risk of cirrhosis. It’s welltolerated, and it prevents the progression of hepatitis B better than the standard treatment right now,” said Siegel. The study authors pointed out that telbivudine hasn’t yet been compared to entecavir in a randomised clinical trial. Entecavir, another new hep B medication, has also been shown to be more effective than lamivudine and creates less resistance as well. Lai C-L, et. al. Telbivudine versus Lamivudine in Patients with Chronic Hepatitis B. New England Journal of Medicine; Vol357(25):2576-2588 • Abridged from www.healthday.com (19 Dec 2007)
The Hep C Review
Ed61
June 2008
51
research update Chinese herb may inspire drug development
Prejudice among health care workers
China – Scientists from the Beijing Genomics Institute have determined that the antifibrotic function of Chinese herbal extract Cpd 861 is evidently different from that of Western antifibrogenic drugs and could allow for the development of new drugs for hepatic fibrosis – a condition which can lead to portal hypertension or cirrhosis.
Australia – Recent research measured explicit (self-reported) and implicit (unconscious) attitudes of health care workers and their hep C positive drug injecting clients toward each other, and the association of these attitudes with contact.
Previous research has shown that Cpd 861, which was formulated in accordance with traditional Chinese medical theory, and can significantly improve the clinical manifestations and biochemical parameters of people with hepatic fibrosis. The scientists explain that the herbs used to prepare Cpd 861 have been used for thousands of years in Traditional Chinese Medicine, and the results of this research could allow for the development of effective antifibrogenic drugs from Chinese medicinal herbs. Further research should be done to explain the mechanism for Cpd 861’s regulation of collagenrelated gene expression and to identify the active antifibrotic ingredient in Cpd 861. Wang L, et. al. Herbal compound 861 regulates the mRNA expression of collagen synthesis and degradation related genes in human hepatic stellate cells. World J Gastroenterol 2008; 14(10): 1790-1794 • Abridged from www.sciencedaily.com
Sixty health care workers and 120 of their clients with hep C acquired from injecting drug use, were administered measures of attitudes to determine whether greater contact with hep C positive clients would result in more favourable attitudes on the part of health care workers toward these clients, and also on the part of these clients towards their health care workers. Findings suggest that increased contact between health care workers and clients with hep C is associated with more favourable explicit attitudes and more negative implicit attitudes among health care workers toward injecting drug users. Findings also suggested a correlation between greater contact of health care workers, and favourable explicit attitudes of clients. However, no correlation was found with implicit attitudes and contact between workers and clients. Brener L, et. al. Prejudice among health care workers toward injecting drug users with hepatitis C: Does greater contact lead to less prejudice? International Journal of Drug Policy; 18(5): 381387 • Abridged from http://linkinghub.elsevier.com
Resilience and coping Australia – Social marginalisation is associated with poor health outcomes. However, a psychosocial study of treatment for hep C infection in Sydney showed that participants living in socially disadvantaged circumstances applied adaptive approaches learned from past experiences of drug dependence. Living with symptoms of chronic illness or coping with depression and childhood sexual abuse helped them to endure severe treatment-related side effects.
52
www.hepatitisc.org.au
This finding has implications for the management of hep C treatment; the factors and processes that facilitate coping with adversity, associated with social marginalisation, can be assessed for their contribution to coping with an arduous regimen. Hopwood M, Treloar C. Resilient coping: Applying adaptive responses to prior adversity during treatment for hepatitis C virus infection. Journal of Health Psychology; 13(1): 17-27 (2008) • Abridged from http://nchsr.arts.unsw.edu.au
research update An overview of liver disease in Europe
Adiponectin predicts fatty liver and treatment response
Europe – Estimates suggest 10 million people are living with viral hepatitis in Europe, of whom over 8 million have hep C. Although statistics vary by country, hep C accounts for a large (or in some countries, majority) proportion of all cases of cirrhosis and liver cancer. Although precise figures are not available, alcoholic liver disease is a growing problem in both Western and Eastern Europe, in part because of changing lifestyles and the increasing numbers of women and adolescents who drink to excess (a problem that in the past was largely a phenomenon of adult males).
USA – Lower adiponectin levels are associated with a higher risk of liver steatosis and a lower rate of response to interferon/ribavirin combination treatment, according to a report in the American Journal of Gastroenterology.
The Dionysos study, conducted in Northern Italy, reported that 4% of the population had alcoholic liver disease of varying severity. Alcoholic liver disease is the second most common indication for liver transplantation, after hep C. Nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis denote fatty infiltration of the liver that is not the result of excessive alcohol, but related instead to insulin resistance, type 2 diabetes, obesity, and the metabolic syndrome. These abnormalities are now receiving considerable attention not only because they may progress to liver cirrhosis, but also as additional risk factors for cardiovascular disease. The best current estimates suggest that in the general population, NAFLD can be found in 3% to 24% of adults. Despite improved prevention, diagnosis, and treatment, the overall costs of liver disease remain very high because of an increased prevalence of selected conditions, and the common progression to a chronic state, possibly leading to life-threatening complications. • Abridged from a European Association for the Study of the Liver (2008) conference report. Detailed reporting can be found at www. hcvadvocate.org
Recent studies have shown an association between nonalcoholic steatohepatitis (NASH) and reduced serum adiponectin, the authors explain, but the relationship between combination treatment and serum adiponectin has not been examined in detail. Dr Theodoros Zografos and associates from University of Thessaly, Larissa, Greece evaluated whether various features of chronic hep C, including the presence of steatosis and the response to treatment, could be linked to serum adiponectin and tumour necrosis factor (TNF)alpha levels. Authors reported that among 83 people studied with chronic hep C, those with steatosis had significantly higher TNF-alpha levels than those without steatosis. However after adjustment for hep C genotype, lower serum adiponectin and longer disease duration were independent predictors of steatosis grade in patients with genotype 1. In patients with genotype 3, lower adiponectin and increased body mass index (BMI) were independently associated with steatosis grade. Virological responders to treatment had significantly higher serum adiponectin before the beginning of therapy than did nonresponders, and lower serum adiponectin and genotype 1 were the only independent variables that predicted no virological response to treatment. “Serum adiponectin and TNF-alpha at baseline seem to be independent predictors of liver steatosis, irrespective of HCV genotype, while adiponectin is also an independent predictor of the achievement of end-of-treatment virological response,” the authors concluded. Zografos TA, et. al. Adiponectin: A New Independent Predictor of Liver Steatosis and Response to IFN-a Treatment in Chronic Hepatitis C. Am J Gastroenterol 2008;103:605–614 • Abridged from www.medscape.com
The Hep C Review
Ed61
June 2008
53
interferon-based therapy Peg Interferon alpha and Ribavirin Overview Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily. Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has. S100 government subsidised treatment information Subsidised ‘peg combo’ treatment for people with chronic hep C is available to those who satisfy all of the following criteria: 1 Blood tests: people must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive). 2 Contraception: women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both a woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female
partners must use effective forms of contraception (one for each person). Female partners of men undergoing treatment must not be pregnant. 3 Age: people must be aged 18 years or older. 4 Treatment history: people must not have had prior interferon or peg interferon treatment. Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2 log drop. The baseline and 12-week tests must be performed at the same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary
for people with genotype 2 and 3 because of their higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2 log drop in viral load, may only continue treatment after 24 weeks if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may only continue treatment after 24 weeks if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Liver biopsy no longer a general requirement for treatment From 1 April 2006, a biopsy examination is no longer a mandatory pretreatment test for people wanting to access government subsidised S100 hep C pharmaceutical treatment. Note that some people with genotype 2 or 3 may still require biopsy to determine whether they have cirrhosis or
CAUTION Treatment with interferon alpha has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised PegInterferon Alpha-2b if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or in the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
54
www.hepatitisc.org.au
complementary medicine bridging fibrosis – which would have an impact on treatment monitoring. See ‘Monitoring Points’, lower left. For further information on this issue, please speak to your treatment specialist. Alternative access People wanting to access Interferon-based therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, people should contact their nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see p52).
Complementary medicine Good results have been reported by some people using complementary therapies, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects (Ed 15, p 6). A similar trial, but on a larger scale, was later carried out (Ed 24, p 8). A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (Ed 45, p 9).
• A nurse educator/counsellor for patients
Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to:
• 24 hour access to medical advice for patients
• Will they consider all relevant diagnostic testing?
• An established liver clinic
• Will they consult with your GP about your hep C?
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:
• Facilities for safe liver biopsy. Treatment centres exist in most parts of NSW. Phone the Hep C Helpline for the contact details of your nearest centre. NSW Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • HCCNSW (above info is reviewed by the Commonwealth Department of Health prior to publication).
• Is their treatment dangerous if you get the prescription wrong? • How has their 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 they measured the health outcomes of their therapy?
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to arrangements about payment; perhaps a discounted fee? It is also important to continue seeing your regular doctor and/ or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and well experienced in working with people who have hep C. Additionally, they should be members of a relevant professional association. Phone the Hep C Helpline (see p56) for more information and the contact details of relevant professional associations. • HCCNSW
The Hep C Review The Hep C Review Ed60 Ed61 March June 2008
55
support / info services NSW Hep C Helpline
Family and relationship counselling
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 referral to local health care and support services: • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers)
If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.
Prisons Hep C Helpline
Sexual health clinics
A special phone service provided through the NSW Hep C Helpline that can be accessed by NSW inmates and prison staff. Call this free and confidential service by using the prison phone, or by calling the numbers above.
Although hep C is not classified as a sexually transmissible illness, these clinics offer confidential pre- and post-test discussions and HCV blood tests. They are listed in your local phone book under ‘sexual health clinics’. They do not need your surname or Medicare card, and they keep all medical records private.
Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or www.daa.asn.au General Practitioners It is important that you have a well-informed GP who can support your long-term health care needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system. The NSW Hep C Helpline may be able to refer you to doctors and other health care workers in your area who have been involved in hep C training. Alcohol and other drug services People who inject drugs and want to access peer-based info and support can phone NUAA (the NSW Users and AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a drug or alcohol related problem. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW) for advice and details on your nearest clinic.
56
www.hepatitisc.org.au
Family Drug Support FDS provides assistance to families to deal with drug issues in a way that strengthens family relationships. Phone FDS on 1300 368 186.
Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some Neighbourhood Centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Neighbourhood Centres can be found by phoning your local town Council. Other support and counselling Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. They offer free and confidential short- and long-term counselling, support and advocacy to affected people and their families and/or carers. Traids services can be accessed either face-to-face or by telephone. For more information, phone 9843 3143 (Traids have a call-back policy for NSW regional callers). Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English and for more details, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net/ Additionally, the Hep C Helpline distributes some information resources in various languages.
support / info services Further, the Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Phone ASHM on 8204 0700. Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C related legal issues. They offer advocacy and advice on a number of problem types including: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and health care complaints; and the appointment of attorneys and guardians. For more information, phone 9206 2060 or 1800 063 060, or visit www.halc.org.au Hep Connect peer support program HepConnect offers support and discussion with volunteers who are affected by hep C and have been through treatment. This is a free and confidential phone based service which anyone in NSW can access. To speak with a volunteer please phone 9332 1599 or 1800 803 990 (Freecall from regional NSW). Hep C Australasia This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning between 10.30 and 11am, (Eastern-Standard-Time). Go to 3CR’s website at www.3cr.org.au and follow the prompts. Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Hunter Hep C Support Services A service for all people of the Hunter region living with hep C. It is linked to a team of health care professionals specialising in hep C treatment and care. Based at John Hunter Hospital, New Lambton. For information, please contact Gabrielle Murphy on 4922 3429 or Tracey Jones on 4921 4789.
Nepean Hep C Support Group Guest speakers keeping you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information, please contact Vince on 4734 3466. Northern Rivers Liver Clinic Support Group An opportunity for people contemplating treatment, undergoing treatment, and for those who have completed treatment to get know each other. For more information, please phone 6620 7539. Port Macquarie Hep C Support Group Peer support available for people living with or affected by hep C. For information, please contact Lynelle Wood on 6588 2750 or Alison Mears on 0418 207 939. St Vincent’s Support Group Darlinghurst This treatment-related support group meets on the first Tuesday of each month. St Vincent’s Hospital, Darlinghurst. For information, please contact Zoe Potgieter 8382 2887. Parramatta Support Group A support group for people living with hep C, including those on treatment. From 7pm to 8.30pm, the first Thursday of each month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 158 Marsden St, Parramatta. There is no parking on site. It is a 10 minute walk from Parramatta station. For information, please contact Traids on 9843 3143 or Susan on 9845 5627. 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 five dollars 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 Traids on 9843 3143 or Susan on 9845 5627.
The Hep C Review
Ed61
June 2008
57
noticeboard Our loan library Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require. Items are loaned free of charge but you need to pay return postage. Videos/DVDs The Big Combo (HCCNSW, 2002): 20 min DVD with two people who consider pharmaceutical treatment for hep C in very different ways; information on current treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English. Everybody’s Business (MHAHS/ANCAHRD, 2004): Covering hep C and HIV; suitable for health workers working with groups. Comes with a facilitator’s workbook. Available in English, Khmer, Somali, Indonesian and Thai. Look Back Look Forward (Kathy Sport/Ronin Films, 1998): 30 min video with real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers. English. (Members only) Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hep C clinical management, treatment and prognosis. Suitable for health workers. (Members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hep C management, treatment and lifestyle issues, as well as other liver disorders. Suitable for individuals and health workers. (Members only) •
HCCNSW
Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information: www.hepatitisc. org.au/hepcouncil/disputes_policy.pdf Or phone us here at the office (see page 3 for our contact details).
58
www.hepatitisc.org.au
Did you know
that the following factsheets are free to download from our website? Antibody testing Australian snapshot Blood & organ donation Complementary therapies Council history Council overview Diet Disclosure Discrimination Disposing of fits Fatigue First aid & general precautions Genotypes Harm minimisation Heps A B & C HIV coinfection Liver biopsy Liver function testing Liver transplant Natural history Painkillers PCR availability PCR & HCV transmission Pegylated combo therapy Pregnancy, babies & children Prevention Sexual transmission Stress Superannuation Support services Symptoms Tattooing Test counselling Treatment consent Treatment response Treatment side effects Workplace issues
www.hepatitisc.org.au
membership form / renewal / tax invoice An invitation to join or rejoin the Council Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About the Council We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hep C throughout NSW. The Council is overseen by a voluntary Board of Governance, primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.
Privacy policy The Hepatitis C Council of NSW respects and upholds your right to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information. For a copy of the policy, please contact the Council office on 02 9332 1853 (Sydney and non-NSW callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hepatitisc.org.au
1. Please complete A or B or C, then complete other side
A. For people affected by HCV, or other interested people Name Postal address
Suburb/town State
Postcode
Home phone
Email:
B. For individual healthcare or related professionals Name Occupation Postal address
Suburb/town State
Postcode
Work phone
Work fax
Mobile
Email:
Membership
May we list you on our referral database?
Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) must renew their memberships on an annual basis. Membership income assists the Council greatly in its work throughout the year.
Free copies of The Hep C Review required
NSW health care workers One of our services is the NSW Hep C Helpline, an information and support phone line that is able to refer callers to a range of services and health care workers in their local area (within NSW only). If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular HCV update information. Please note that we encourage services on our referral database to become members of the Council.
1
2 5 10 20 50 80 160
C. For agencies, organisations and companies Name of agency Contact person Position Postal address
Suburb/town
As the most widely-read hep C publication in NSW, targeting both people affected by hep C and health care workers, The Hep C Review is provided free to all members of the Council.
State
Postcode
Work phone
Work fax
Mobile
Email:
In NSW, if your service has clients/patients who may be interested in The Hep C Review, please indicate the number of extra copies you would like to receive on this form.
May we list you on our referral database? Free copies of The Hep C Review required
The Hep C Review
Ed61
1 2 5 10 20 50 80 160
June 2008
59
membership form / renewal / tax invoice 2. Are you a new or existing member? This is the first time I've applied to become a financial member
5. Separate donations are gratefully accepted by the Council.
Donations of $2 and over are tax deductible. If you would like to make a separate donation, please record the amount here:
I'm already a financial member and this is a membership renewal
$.....................................
I currently receive your magazine and I want to become a financial member
6. If paying by credit card, please provide all information in this section.
I'm not sure - please check your database
Card number:
3. Our membership year begins on 1 March and finishes on the last day of February. To become a financial member, please tick one membership fee box, below:
Card type
Waged: for people in paid employment
$25
Cardholder signature:
Concession: for people on government benefits
$10
Zero Fee membership: for people in NSW experiencing severe financial hardship (NSW prison inmates)
$0
Individual health or allied professionals
$40
7. Payment, GST and postage instructions
Community-based agency (Management Committee run)
$50
All Council membership fees are GST exempt but for most people, our membership fees are not tax deductible.
Public/private sector agency
$70
NB: Above are Australian rates only. Overseas applicants please contact the office or consult our website for additional surcharge information.
4. Contact with the Council office. We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office. I'd like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work for the Council
MasterCard
Expiry date:
Visa
month:
Bankcard
year:
Please print cardholder name:
If paying by cheque or money order, please make payments out to:
Hepatitis C Council of NSW - Membership
Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt? If you would like a receipt for your payment, please tick the box (right)
9. Declaration - I accept the objects and rules of the Hepatitis C Council of NSW and apply for membership of the Council. I agree to my personal contact details being held by the Council and used in accordance with the Council's privacy policy. Signed:
Dated:
If you would like to obtain a copy of our constitution or privacy policy, please contact the office (02 9332 1853) or visit our website: www.hepatitisc.org.au
This section office use only
date received
staff initials
60
www.hepatitisc.org.au
amount received
receipt number
date entered
membership number
info pack sent?
