C
Hepatitis
Community News #44 • July 2009
Hepatitis C Community News July 2009 •
Introduction Welcome to our newest—and slightly late—edition. This planned lateness was due to Hepatitis Awareness Week 2009 in May, and you can find out more about what happened in the front half of this magazine. The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Fax: Web: Email:
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au
The big news of Awareness Week was the launch of the long-awaited Hepatitis C Action Plan 2009-2012 for SA. You can find out more about it within, and we’ll have more detail in the next issue. Other upcoming features include a look at hepatitis C and food, hepatitis C and insulin resistance, interviews with health care workers and with people living with HCV, and more.
Next issue’s copy deadline is 21 August, and the magazine will be published in September. See you then.
STAFF Executive Officer: Kerry Paterson Administration Coordinator: Lynn Newman
About the Cover
Info and Support Line Coordinator: Deborah Warneke-Arnold
On the front, some of the entrants to our latest Colour In Oliver competition, held during Awareness Week this year. The photos in the background are all from Awareness Week campaigns—for more, see pages 4 and 5. On the back, our new comic strip continues with part four. Script and art by James Morrison.
Info and Support Line Volunteers: Fred Lyn Will Judy Anne Debra Michele
Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
Administration Officer: Megan Collier
Coordinator of Education Programs: John McKiernan Educators: Maggie McCabe Alan Yale Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Adil Bryan Gauri Lyn Mark Phil Philip Yvonne
Contents 1
Looking Back and Ahead
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Awareness Week Launch
Publications Officer: James Morrison
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The New HCCSA Website
Librarian: Joy Sims
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Awareness Week in Pictures
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Make a Noise: Politics
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Make a Noise: Down My Street
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Adelaide’s CHARIOT Research
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The Action Plan
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Poetry
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Police, Privacy and Blood II
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Library News
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Second Story
BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Bill Gaston Carol Holly Stefan Parsons Justine Price Kristy Schirmer
Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Council members and the general public.
Hepatitis C Community News • July 2009
Picnic. Lightning.
Looking Back, Looking Ahead
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May was World Hepatitis Day, an annual event which aims to raise awareness that 1 in 12 people across the world are living with chronic viral hepatitis: chronic hepatitis B and/or chronic hepatitis C. These statistics tell us viral hepatitis is of global epidemic proportions, and, as most of you know, a huge challenge for health systems world-wide. I believe South Australia is a step closer to meeting that challenge today, with the launch of the SA Hepatitis C Action Plan. The Hepatitis C Council of SA would like to take this opportunity to congratulate the SA Department of Health, in particular staff from the HIV/Hepatitis C Policy and Programs, and partner agencies across the government and nongovernment sectors who have contributed to the first Hepatitis C Action Plan for SA, a milestone strategic document for our state. The Council would also like to acknowledge the current work being done by the Department of Health to develop a strategic response to chronic hepatitis B in South Australia. Another milestone to consider in 2009 is that it is now 20 years since the hepatitis C virus was first identified in 1989. This marked the beginning of a health response to hepatitis C in this country, and over this 20-year period, we have seen progress—even if at times it seems to happen at too slow a pace for some of us. I would nominate the following as some of the markers of progress. • Obviously from my perspective, there is the establishment of Hepatitis Councils in the earlyto mid-‘90s, and their ongoing steady growth since that time. Most importantly, Hepatitis Councils have increasingly been able to provide opportunities for those people affected by hepatitis C to be
directly involved in planning and delivering services, and in having their voices heard by a broader audience. • We have seen medical progress. Current treatments can now achieve sustained viral response (SVR) in 60% of people undertaking treatment overall, and more than 80% SVR for people with some genotypes. We have also seen some significant barriers to treatment access being removed from the S100 criteria, such as mandatory liver biopsies and current drug use behaviour. • The hepatitis C sector workforce has also seen steady growth, and we now have a skilled, knowledgeable and diverse—if still relatively small—dedicated workforce, who have developed some excellent hepatitis C services in SA. At this milestone time in the response to hepatitis C in SA, (and the beginnings of the response to chronic hepatitis B), it is appropriate to pause and consider our progress. However, we all know there is still a long way to go, with many challenges ahead. I would like to highlight two of those challenges. The Minister outlined the key priorities of the Hepatitis C Action Plan (see page 10): enhancing prevention and increasing access to treatment. The Action Plan also has a focus on increasing access to all services for the hepatitis C priority population groups: people who inject drugs, prisoners, people from Aboriginal and Torres Strait Islander communities, and members of culturally and linguistically diverse communities. Each of these population groups has a complex cultural context. This presents us with a huge ongoing challenge in reorienting our service delivery models to be culturally appropriate and more accessible to these groups in a sustainable manner.
Secondly, attracting the necessary resources for the implementation of the Hepatitis C Action Plan in the current economic climate will also be a challenge. This means that the relatively new South Australian Health Steering Committee on HIV/AIDS and Hepatitis C (SAHSCHAHC) will have an important role to play in gaining greater priority for hepatitis C on the agenda across the breadth of the South Australian health system, as well as the other relevant government departments (such as Education and Corrections). As a member of this committee, I have observed what I believe are some promising early signs, and I hope that we will see greater integration of hepatitis C services unfold over the life of the Action Plan. On another positive note, I would like to speak about the partnership model which has underpinned our working relationships in this sector. This model brings together a diverse range of government and community agencies with a wide range of expertise and experience, and has been a vital strength of the response to hepatitis C. It has allowed us all to extend our services beyond the resources of our own individual organisations. I have no doubt that it will continue to be a strength of our communal response as we move forward, embracing new partners and broadening relationships with our existing partners to meet the objectives of the Action Plan. The Hepatitis C Council of SA thanks all of our current partners for their ongoing commitment to meeting the challenges presented by hepatitis C, and we look forward to working with you all over the next three years of the Action Plan—and beyond. Kerry Paterson (Adapted from a speech delivered on World Hepatitis Day)
Hepatitis C Community News July 2009 •
Awareness Week: The Launch
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hank you for inviting me today to launch National Hepatitis Awareness Week in South Australia, as well as launching the first South Australian Hepatitis C Action Plan. On this day, in over 200 cities around the world, people are being encouraged to consider the question ‘Am I number 12?’, acknowledging that, globally, 1 in 12 individuals have either chronic hepatitis B or C. This is a staggering statistic, and we must do more to stop the spread of these diseases through the enhancement of targeted prevention programs which focus on priority population groups. Although hepatitis B is a preventable illness, in South
Australia, between 1996 and 2008, there were 4,422 hepatitis B notifications. The key public health response for the prevention of hepatitis B is the statewide hepatitis B vaccination program. In 2008, SA Health distributed 17,902 doses of hepatitis B vaccine to babies at birth and 25,690 doses to adults. Free access to hepatitis B vaccine is also provided for people who are at most risk of acquiring the infection. Importantly, the SA Hepatitis C Action Plan includes a dedicated strategy to increase access to hepatitis B vaccinations for people who inject drugs. The SA Health Department has also begun developing a strategic response to chronic hepatitis B. In Australia, chronic hepatitis B largely affects people from countries where there are no universal hepatitis B vaccination programs, as well as our indigenous communities, where vaccination programs have not been universally implemented.
For hepatitis C, between 1995 and 2007 inclusive, 15,746 cases of chronic hepatitis C infection were recorded in South Australia. The first South Australian Hepatitis C Action Plan reflects the South Australian government’s commitment to this significant health issue, which affects between 1% and 1.5% of the state population. The South Australian Hepatitis C Action Plan sets priority strategies, activities and performance indicators, and will provide direction for the management of hepatitis C over the next three years. The goal of the Action Plan is: • to reduce transmission and minimise the personal and social impacts of hepatitis C. The Action Plan will achieve this goal through two key priorities. • Expansion of access to effective treatments among the main populations affected by hepatitis C in South Australia; and • expansion of targeted prevention programs. Under the priority to expand treatment access, the Action Plan includes the expansion and coordination of treatment services by increasing the capacity of specialist treatment centres—as well as primary health care and community settings—through increased nursing capacity and GP participation. As part of the Action Plan’s priority to expand targeted prevention programs, the priority target group is people who inject drugs, with a special focus on those people new to injecting, and those who are more marginalised or have special needs. South Australia’s Clean Needle Program has been shown to be highly effective in the prevention of HIV transmission through injecting drug use. In order for the Clean Needle Program in South Australia to be equally effective in the prevention of the much more infectious hepatitis C virus,
Hepatitis C Community News • July 2009
HCCSA Website these programs need to be further developed.
Made over, but still evolving
The Action Plan includes expansion of this program to rural areas, 24-hour access, expanding the range of equipment available, and the targeting of programs to particular communities at risk, such as culturally and linguistically diverse communities, Aboriginal people engaged in risk behaviours, and young people new to injecting.
ebsites, like creatures that moult and grow into new skins, have to keep changing and growing. So in recognition of that, we’ve given our website a new look and lots of new functions.
The strategic response to hepatitis C in South Australia depends on the maintenance and support of the partnership between the government, non-government and community sectors. The ongoing involvement of key communitybased services like the Hepatitis C Council of SA, and those most affected by hepatitis C, will ensure that implementation of the South Australian Action Plan is successful. It gives me great pleasure to launch the South Australian Hepatitis C Action Plan on this World Hepatitis Day, and to congratulate you all on your dedication and hard work in reaching this important milestone in the South Australian response to hepatitis C. Finally, sincere thanks to the staff and volunteers of the Hepatitis C Council of SA for organising today’s important event. I commend you on your ongoing efforts and commitment to tackling Hepatitis in South Australia.
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The Council’s first website was set up around 2002 when the World Wide Web was still a relative novelty. It was given a little nip-tuck in 2006, with incremental changes added over the next two and a half years until it finally got the extreme makeover in 2009. What’s new? Besides a neater layout and more coherent menu structure, a significant number of new functions have been added. Our website now has: • a new, easy-to-use order cart for resources, • a photo and art gallery to show off our community’s artwork and pictures taken at events, • an opinion poll for you to have your say, • a search engine for articles on the site, and • a calendar of events where you can check up on when that next Calming the C or Hep C Network meeting is going to be.
All the popular pages on the old site—such as the fact sheets and presentations—have been retained in the new site. You can check up on the Council’s current and past projects, job or volunteer vacancies, what we’re stirring up in our Make A Noise campaign, catch up on the Community News magazine, and revisit Jack in LiveRLife. The navigation has been restructured to reflect what visitors look for when visiting the site. Brief notes on hepatitis C are readily available on the front page with links to more information. Most of the new features and content on the site have been put in as a result of feedback over the years from visitors and Council workers. Built with the Joomla! content management system, the HCCSA site is W3C-compliant, with accessible tagging and a discreet “skip to content link” for web readers. Although it has been user-tested prior to going live, we know it will be constantly evolving—as all internet publications should be. We welcome criticisms and ideas, so don’t hesitate to contact us if you have any. Our website can be viewed at www. hepccouncilsa.asn.au.
I now officially launch National Hepatitis Awareness Week 2009 in South Australia, and wish you all the very best with your awareness week activities. Hon. Dr Jane Lomax-Smith Minister for Mental Health and Substance Abuse, representing the Hon. John Hill, Minister for Health (Edited text from a speech delivered at the launch of Hepatitis Awareness Week 2009)
Hepatitis C Community News July 2009 •
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Awareness Week in Pictures
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Hepatitis C Community News • July 2009
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1: Launch of Hepatitis Awareness Week in SA, at the Sophia Centre (2) 3: Kerry Paterson, Minister Lomax-Smith and Matthias Wentzlaff-Eggebert 4: Healthy Liver Lunch at the Vietnamese Community in Australia (SA Chapter) offices in Athol Park 5: Some of the Awareness Week displays that went up around Adelaide 6: HCCSA’s contingent in the RSPCA’s Million Paws Walk included dogs both real and balloon
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Hepatitis C Community News July 2009 •
MAKE A NOISE!
Political Will The Health Minister on hep C
Contributing to the National Response
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rofessor Michael Kidd and Senator Jan McLucas visited the Council during April to hear from us about hepatitis C issues in South Australia.
HCCSA Treasurer Darrien Bromley and Health Minister John Hill
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epatitis C is an important public health issue for South Australians. The first-ever SA Health Hepatitis C Action Plan (2009-2012) is testament to the commitment, expertise and dedication of all partners (people with hepatitis C, affected communities, clinicians, non-government organisations, researchers, health service providers and Government) in the response to hepatitis C. It is particularly encouraging to see that the Action Plan responds to the strong vision of the SA Health Strategic Plan, ‘The best health for South Australians’, with a comprehensive set of concrete and achievable strategies and actions in prevention, treatment, research and workforce development, as well as addressing stigma and discrimination. I applaud the courage of people with hepatitis C and those from affected communities to be visible and contribute as centrally as they have done on the development of this plan, and I hope to count on your contribution as partners in its implementation.
Hepatitis C Community News • July 2009
Increasing access to and uptake of treatment over the next three years will be crucial to diminish the health and personal impact of hepatitis C, and continuing to reduce new infections through targeted prevention programs is an equally important goal. I look forward to the continuing relationship between the Government and non-government sectors in the response to hepatitis C, and wish us all success in achieving the goals of the Action Plan. The Hon. John Hill Minister for Health
Professor Kidd was the recently appointed chair of the new Ministerial Advisory Committee on Blood-Borne Viruses (BBV) and Sexually Transmitted Infections (STI), by the Health Minister, Nicola Roxon. This committee’s role is to advise the Australian government on a national framework to prevent and treat blood-borne viruses and STIs and play a role in the implementation and monitoring of the new framework. Senator McLucas was representing the Health Minister and is also involved in revitalising the Australian government’s Parliamentary Liaison Group on BBV and STIs, and advised us that the Minister was committed to the partnership approach with the nongovernment sector in the response to BBV and STIs, and this national tour was to assist in facilitating effective connections between all the key stakeholders. The Council welcomed this more pro-active consultative approach by Professor Kidd and Senator McLucas as it gave us the opportunity to discuss many of our local issues in the response to hepatitis C in South Australia, as well as let them know about our current work, get them to meet staff and volunteers and have a tour of our premises, which we believe gave them a very good insight into our local context.
Senator McLucas and Professor Kidd
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unning an awareness campaign on a shoestring can be a real challenge— unless you have a supportive network! When the Council sent out a little email asking colleagues to drop some bookmarks in letterboxes down their streets, little did we expect the enthusiastic response that came back. Some people forwarded emails to others on their networks. Others walked not only their streets but their neighbourhoods as well, and some letterboxed streets around their workplaces. One service brought the bookmarks to 25 remote communities. In all, about 40 people walked down their streets, bringing the hepatitis awareness message to their neighbours. One person met a neighbour who promptly asked for 20 bookmarks to take to a meeting that she was attending on the day. In Australia, one in 60 people have either hepatitis B or C, translating roughly to one person on an average suburban street of 24 homes. Our network of supporters covered 38 suburbs and 25 remote communities letterboxing over 6,500 homes, potentially reaching almost 15,000 people.
Not a bad outcome for a couple of hours’ healthy exercise. Cecilia Lim
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ecently I was reading the current Hepatitis C Community News, as I have been considering treatment for my hepatitis C. One of the themes struck me as a necessity - to be vocal about hepatitis C so as to reduce the stigma and encourage awareness and understanding for treatment and prevention, which in this case, is much, much better than cure! The stigma bothers me immensely, as I feel as though I’ll be ‘tarred and feathered’, along with my children, if I disclose my hepatitis C status. Still, I have an urge to
MAKE A NOISE!
Down My Street
help prevent the spread of this insidious disease. Delivering bookmarks to letterboxes seemed to be an inconspicuous way of informing my local community of the hepatitis C statistics. If even one person is saved, forewarned or encouraged by this knowledge, then my time was worth it. Armed with 50 bookmarks, my daughter and I took our dog for a walk around the neighbouring streets and discreetly slid the bookmarks into 50 letterboxes. I quietly pointed out to her that the statistics say 1 in 12 of these people could have this disease, and she remarked that was a lot in such a small area! We had fun trying not to be seen by anyone on the walk, and I noted how quickly I became judgemental and selective as the bookmarks ran low. We realised that 50 bookmarks didn’t cover many houses or streets. We might only reach four people—even the dog was disappointed at how short the walk was! I felt I needed to have more impact in my area to spread the knowledge and not the disease, so I requested another 200 bookmarks and we went for three more enjoyable walks. Elaine Bridges (a pseudonym) Hepatitis C Community News July 2009 •
Clinical Trials in Hepatitis C World-leading research from Adelaide
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n Australian-led international clinical trial has highlighted the benefits of treating hepatitis C sooner rather than later. The study involved more than 700 Australians with hepatitis C and 33 Australian hospitals. It found people living with the most common strain of hepatitis C who receive treatment when there is minimal, or no liver damage, may double their chance of a cure, compared to those treated in the later stages, where liver damage has become more advanced. According to the lead investigator, Associate Professor Stuart Roberts, Director of Gastroenterology and Hepatology, The Alfred Hospital, Melbourne, the study enabled a close look at treatment strategies to see when they are most effective. “The study confirmed that the current standard of care is effective. In addition, the study demonstrated that the cure rates in this common strain of hepatitis C may be a lot higher than we previously thought,” he said. “We found that up to seven out of ten people, with the most common strain of hepatitis C (called genotype 1), may be cured if treatment starts before liver scarring or damage has occurred.”
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epatitis C treatment knowledge has developed considerably in the six years since I commenced working as the Clinical Trial Coordinator in the Viral Hepatitis Centre and Hepatology Unit at the Royal Adelaide Hospital. An outstanding contribution to this increased knowledge was the Australian Investigator-initiated CHARIOT study, as outlined in Dr Hugh Harley’s article published in this issue of the Hepatitis C Community News (see next page). CHARIOT has shown that in Genotype 1 patients, the earlier the virus is treated the better the outcome of treatment, and that with a rapid viral response (RVR), undetectable virus at week four of treatment, outcomes are also much improved. It was exciting to see these results being published and discussed worldwide, knowing of the contribution South Australians made through both the Royal Adelaide Hospital and Flinders Medical Centre.
According to Stuart Loveday, VicePresident of Hepatitis Australia, this research provides those patients that have not yet received treatment with a good reason to consider their options.
The excitement continues as we see more and more of the newer drugs that Dr Harley mentions being used in clinical trials in Australia. The Viral Hepatitis Centre and Hepatology Clinical Trial Unit at the Royal Adelaide Hospital are involved in phase 2 and 3 clinical trials to treat our South Australian patients with the new treatment drugs.
“Currently, fewer than 2% of Australians with chronic hepatitis C are receiving treatment. Some people with hepatitis C risk ongoing liver disease, liver failure and ultimately liver transplantation if they do not undergo timely treatment,” he said.
These trials involve both treatment-naïve patients (those who have never been treated for hepatitis C) and patients who have previously failed treatment for hepatitis C being given access to drugs which are unlikely to be marketed for three to five years.
“This study confirms that cure rates are highest for people with hepatitis C genotype 1 when they have treatment early.”
In collaboration with C-MAX (an early-phase trial unit based at the RAH), we have also
Hepatitis C Community News 10 • July 2009
participated in phase 1 studies (very preliminary studies of any new drug) involving naïve and treatment-experienced patients with very positive results. Both units are well recognised internationally. The hope for future treatments of hepatitis C is for a shortened duration of treatment, an improved percentage of outcomes, and reduced toxicity leading to a better quality of life while on treatment. Of course, interferon and ribavirin will continue to be used in conjunction with the polymerase and protease inhibitors for many years to come. The use of interferon and ribavirin with these newer drugs helps to reduce the likelihood of the hepatitis C virus mutating, as seen in the HIV and hepatitis B treatments using these types of drugs. New interferon-based drugs with less associated toxicities are also currently being trialled. Treatment on a clinical trial can give a patient a chance at an improved outcome to treatment while simultaneously improving hepatitis C treatments and outcomes for future patients. If you, or someone you know, would like to find out if you are eligible to receive treatment on a clinical trial, please contact me on the phone number or email address below.
Megan Phelps CPC Clinical Trial Co-ordinator Viral Hepatitis Centre Level 7 OPD Royal Adelaide Hospital Phone 08 82224248 Fax 08 82236329 megan.phelps@health.sa.gov.au
The CHARIOT Study: A study of efficacy and safety of higher-dose induction therapy with pegylated interferon and ribavirin in genotype 1 HCV infection
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uccessful treatment of Hepatitis C is foremost in the mind of every individual with this infection, and also those of us who treat the disease. Very significant improvements in outcomes have been achieved over the last 20 years by carefully evaluating new strategies and exposing them to rigorous clinical trials. This has led to the current standard of care (SOC) being the combination therapy of weekly pegylated interferon 2a or 2b with daily ribavirin. We understand many of the factors that affect the chances of successful treatment, including the genotype, viral load, duration of disease, patient age, racial background, extent of scar tissue (fibrosis), associated fatty liver disease, excessive alcohol intake, and whether or not the course of treatment can be completed without missing or reducing doses.
We also know that with the SOC the results of treatment are better in patients who have undetectable virus at week four of treatment than in those where this is not achieved. This is called a Rapid Viral Response (RVR). The Sustained Viral Response (SVR) is defined as the absence of detectable virus assessed 24 weeks after the completion of therapy. In many patients this is most certainly a cure of the disease, but in a small minority there may still be minute amounts of virus, but not enough to cause ongoing liver damage. The SVR rates for all-comers with genotype 1 are 40-50%. Genotypes 2 and 3 have SVR rates of 8090%, while genotype 4 (almost universally found in Egyptian patients) has rates of 65-80%. The CHARIOT study was undertaken to determine whether more intensive treatment with a double dose of pegylated inteferon for the first 12 weeks of treatment would increase the RVR rate and thus the SVR rate (SVR). This study is one of the largest studies ever undertaken in the treatment of hepatitis C. It was restricted to individuals with only genotype 1 infection. 896 patients were enrolled, and 702 of these were Australians from
31 different treatment centres. 10% of the Australian patients were from South Australia. The results show a higher RVR rate (at week 4) of 36% versus 26%, and complete early virological response rate (at week 12) of 74% versus 62%. However, the SVR rate was no better at 53% versus 50%. These results reinforced the fact that the current SOC is still the best proven treatment available for hepatitis C. Patients with advanced fibrosis (developing or established cirrhosis) respond less well to pegylated interferon and ribavirin, and induction dosing doesn’t improve results in any particular group. The SVR result was 27% for patients with advanced fibrosis (including cirrhosis), and 70% for those without fibrosis. However, if treatment led to an RVR, the SVR rates were 64% in the advanced fibrosis group and 80% for those with minimal fibrosis. The results also confirmed that a low viral load (of less than 400,000 IU/mL) predicts a better outcome (63% as opposed to (continued on p11) Image Š Luca Volpi Hepatitis C Community News July 2009 • 11
Action! The Action Plan is out!
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fter much anticipation, the Hepatitis C Action Plan 2009-2012 has at last been published by the South Australian Department of Health (see the launch details on pages 1 and 3). This vital document is the blueprint to the way hepatitis C will be handled in this state over the next few years. The Action Plan’s primary goal is simple: to reduce transmission, and minimise the personal and social impacts, of hepatitis C. The expansion of access to effective treatments for the main hepatitis C-affected populations in SA is one of the plan’s key priorities. Although at least half of eligible people with chronic hepatitis C can be cured with current treatments, the number of people who actually undertake treatment is still relatively small. Increasing the number of people treated will improve the quality of life of those living with hepatitis C, reduce the burden of disease and long-term health costs to the state, and reduce further transmission. Addressing the often debilitating symptoms of the virus and the effects of prejudice and discrimination are also vital to improving quality of life and social participation for people affected by hepatitis C. The expansion of targeted prevention programs is the other key priority of this plan. This includes an expansion of the highly successful clean needle program including (increasing its presence in rural areas, giving people access to clean needle program sites 24 hours a day, and making specific CNP programs for the most at-risk communities) and development of educational and professional learning resources for school-based educators and school staff. It is the Action Plan’s focus on its priority populations that is of central importance to its intended success. People who inject drugs, Hepatitis C Community News 12 • July 2009
people in custodial settings, Aboriginal people who engage in HCV-risk behaviours, and people from non-Anglo-Saxon backgrounds are all included here.
maintenance programs will be provided for Aboriginal community services.
As an example, here are the main developments to come in regard to the indigenous people of South Australia.
• Aboriginal Health Workers will be educated in hepatitis C awareness and prevention, treatment programs, health maintenance and monitoring and anti-discrimination issues.
Prevention
Prisons
• New secondary CNP sites will be provided through two metropolitan primary health care services in areas of easy access for Aboriginal people.
• Hepatitis C treatment services will be provided in Adelaide Women’s Prison and three rural prisons (Mobilong, Port Augusta and Mt Gambier) for all Aboriginal inmates.
• New secondary CNP sites will provided through two rural/remote primary health care services operating in areas of easy access by Aboriginal people. • Aboriginal-identified positions working in the CNP and primary health care services will be established, targeting Aboriginal people at risk of hepatitis C. CNPs already working in the metropolitan area will be aided to employ and train more Aboriginal staff. Awareness • One Aboriginal community hepatitis awareness campaign with culturally specific resources will be developed and implemented annually, in consultation with Aboriginal communities. Workforce Development – Treatment/Health maintenance • GPs and Aboriginal Health Workers working in Aboriginal Community Controlled Health Services will be trained in hepatitis C health maintenance and monitoring. • S100 GP prescribers among medical practitioners working in these health services will be trained. • Information on hepatitis C treatment and health
• Strong post-release referral pathways must be formed for Aboriginal inmates between their custodial setting and their community’s hepatitis C services. • Cultural awareness training programs will be established, educating health, welfare and custodial staff in about health issues and hepatitis C. The Hepatitis C Community News will keep you updated as the vital programs are instituted.
The CHARIOT Study (continued from p9) 46%). Unfortunately, only around one-fifth of patients have these low viral loads. The data hasn’t been fully evaluated yet to know whether other factors are also important. Looking at side-effects, the higher induction doses were well tolerated, with only a slightly higher frequency of weight loss and diarrhoea. However, dose reductions were more common with the higher induction dosing, and particularly in patients with advanced fibrosis, mainly due to effects on the white blood cell count (leucopaenia) and red blood cell count (anaemia). This was not an unexpected finding. These dose reductions might partly explain why the results of treatment for advanced fibrosis were less satisfactory. The poorer results in those with advanced fibrosis suggest that altered drug metabolism, or impaired hepatic viral clearance due to the extent of fibrosis, may partly explain the poorer results. The only modification of the SOC that has led to improved SVR rates in difficult-to-treat groups, such as genotype 1-infected patients, has been a longer period of treatment, increased to 72 weeks.
Nitazoxanide, which was originally used to treat parasites in the gut, is a drug that also shows promise, with an action that augments host defences against viral infection.
The results of this study should encourage doctors and patients to consider initiating antiviral treatment as early as possible in HCV genotype 1 patients, before fibrosis has progressed, as the likelihood of an SVR and possible cure is much better than previously appreciated. The other real importance of a study such as this is that it demonstrates that specialists in Australia who manage patients with chronic hepatitis C are at the forefront of expanding the treatment options for patients with HCV infection. All those infected with this virus should know that we will not lessen our endeavours to improve the outcomes of those affected until further advances are achieved. My thanks go to all those individuals who were enrolled in this very important CHARIOT study. Dr Hugh Harley Head, Clinical Hepatology Co-Director, Viral Hepatitis Centre, Royal Adelaide Hospital, and Co-Investigator in the CHARIOT study
If you want to be healthy just like me Then listen to this, I’ve got a recipe: Apples, bananas, any type of fruit, Tomatoes, lettuce, even radish root So… if you want to be cool just like him Than start working at the gym So if you want to be cool just like this Eat an apple for nutrish But on the bad side, this is what it said: Heart attack, even some people dead If you eat like that you’re so unco Burgers, chips! No! No! No! So… be fit, try some swimming If you do you’ll start winning If you don’t have a pool then go to the lake Or maybe go to the fresh river But most importantly
Image © K. Latham
It is clear that the SOC needs to be improved in difficult-to-treat patients, and the strategies currently under investigation are STAT-C agents (Specific Target Antiviral Therapy), including inhibitors of HCV polymerase and protease (bocepravir and telapravir), interferons with different characteristics (interferon lambda1) that may reduce toxicity (particularly related to white blood cells), cyclophylin inhibitors, Debio 025 (which has a mechanism of action not yet understood), and inhibitors of HCV entry to the liver cell.
The combination of telapravir and SOC has shown very good initial results for genotype 1 infections as the initial treatment in previously untreated patients, and also when patients have previously failed to have SVR with SOC.
Love Your Liver
LOVE YOUR LIVER! Ellie Cram, aged 10 Submitted by one of the entrants to our Colour In Oliver competition (see some of the other entries on the Hepatitis C Community News front cover). July 2009 • 13
Police, Privacy and Blood (Part 2) The Council’s concerns about the National Police Reference System
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he complaint made by HCCSA to the SA Police Complaints Authority detailed in the last edition (issue 43, March 2009) of this magazine could not be acted upon, as the young woman who called the HCCSA Telephone Information and Support Service to make the complaint about a breach of her privacy by SA Police was not contactable to follow through with the details needed to pursue the complaint. HCCSA has included information on the role of the SA Police Complaints Authority and contact details in this edition. HCCSA may be able to assist others in the future, if they believe their privacy has been breached by the National Police Reference System. HCCSA is also publishing the letter received from the SA Commissioner of Police in response to previous letters published in the last edition of the Hepatitis C Community News. This letter states that information about blood-borne virus health information is only collected if an individual volunteers to give this information at the time of arrest and official charging. Thus there is no obligation on the individual to disclose his or her hepatitis C status.
The Role of the Police Complaints Authority The Police Complaints Authority is an independent statutory body which answers directly to Parliament. The Authority is entirely independent of the South Australia Police, and none of the staff are police officers. The Police Complaints Authority has been created to: • receive complaints about the conduct of police officers; • maintain a register of complaints lodged both with the Authority and with the police;
The Police Complaints Authority’s physical address (accessible to wheelchairs) is: 5th Floor, East Wing 50 Grenfell Street Adelaide. The postal address is: Police Complaints Authority GPO Box 464 ADELAIDE SA 5001 Telephone: 8226 8677 Facsimile: 8226 8674 email: pca@agd.sa.gov.au
• oversee complaint investigations conducted by the South Australia Police; • investigate certain complaints itself; • assess the merits of complaints; • resolve complaints by conciliation where possible; • recommend disciplinary or other action; and • report to Parliament on the handling of complaints about police.
Image © Kim Davies
Hepatitis C Community News 14 • July 2009
Contact Details
From Malcolm Hyde, South Australia’s Commissioner of Police, to Kerry Paterson, Hepatitis C Council of SA Executive Officer 30 March 2009 I refer to your correspondence dated 20 February 2009 seeking clarification of a number of issues as a result of previous communication with South Australia Police (SAPOL) concerning the recording of persons with Hepatitis C on the National Police Reference System (NPRS). Police obtain information concerning carriers of any communicable disease from the person concerned, at the time of arrest and official charging. The person is asked whether they have any communicable disease. If the person volunteers to provide information that they do in fact have a communicable disease, they are asked what that disease is. It is important to note that this information is provided voluntarily. Arrested and charged persons regularly refuse to answer these questions.
Library News New liver-friendly cookbook reviewed If information is voluntarily provided by the individual, it is recorded on SAPOL’s internal intelligence system for reference by police within an operational setting, in order to minimise risk of infection exposure. Police have strict and enforced policies and rules, including an overall Code of Conduct concerning the access and use of confidential information. Unlike a controlled medical environment, police are subjected to spontaneous, unprovoked and, at times, unintended violence without any forecasting of such violence being about to occur. Furthermore, police are required to undertake enforcement, which includes spontaneous contact, detention and arrest again increasing the likelihood of violence and exposure to communicable disease.
The Hepatitis C Cookbook by Heather Jeanne The National Hepatitis Awareness Week rolled out its new Love Your Liver lunch campaign this year, so we thought we’d have a look at what cookbooks were available for people dealing with hepatitis C. We found one book that directly claims to have developed recipes for Hepatitis C. In the preface, Heather Jeanne told the story of her father’s encounter with hepatitis C and how helping him deal with it changed her whole lifestyle and approach to food. Putting aside some of the slightly jarring terminologies (e.g. “hepatitis C sufferers”), the book itself does offer delicious-sounding recipes that seem relatively simple to prepare. The recipes are organised into Breakfast, Main Meal: Dinner,
Supper and Desserts. Additional sections include the strangely named “Holiday Holidays” (which comprises mainly muffins, pies and finger foods), Salads (which includes pasta and rice), and Extras—the goodies which don’t fit anywhere else. The author has gone for the full fresh, organic food approach, but it is possible to take what works for you and not go to that extent if you personally find it hard to do so. The Hepatitis C Cookbook is available at the Hepatitis C Council of SA Library. All HCCSA members are automatically library members. Individual membership is free. To view our library catalogue, visit www.hepccouncilsa.asn.au and click on Search Library Catalogue under Quick Links. Cecilia Lim
Police may use different tactical options or proceed with an added degree of caution in a potential arrest or violent situation if they are pre-armed with information such as a person being a carrier of a communicable disease. Police have extensive policies and operating procedures to eliminate, reduce and manage risks associated with communicable disease.
South Australia’s Commissioner of Police, Malcolm Hyde
Hepatitis C Community News July 2009 • 15
Second Story Help for young people
T
he Second Story is the Youth Division of the Children, Youth and Women’s Health Service (CYWHS), and provides primary health care services. The term Primary Health Care can be defined as “the essential health care made accessible at a cost the country and community can afford, with methods that are practical, scientifically sound and socially acceptable”. Funded by the SA Department of Health, the Second Story has
O
n Tuesday, 21 April, a small group of peer educators from Second Story’s ‘Inside Out’ and ‘Evolve’ project received training about hepatitis C from the Hepatitis C Council of SA. I was part of this group, and I found the experience
around 50 staff plus approximately 15 grant-funded staff who provide services across the metropolitan Adelaide area. The team of staff consists of information and referral officers, community health nurses, community health workers and medical staff. The Second Story provides free and confidential health services for young people from the ages of 12 to 25. Priority health issues are those related to mental health, sexual health and substance abuse.
to be very informative, wellplanned and presented with a positive mindset and atmosphere. I learned quite a lot of new information which in just one short month I’ve had the privilege of sharing with people in my home, at
Other important concerns are the effects of violence, lifestyle issues, homelessness and unemployment. Priority populations include socially disadvantaged young people, young parents, indigenous youth, same-sex-attracted young people, early school-leavers and young people in secure care centres. The service aims to provide an integrated and co-ordinated service, so there is cross-referral between medical and counselling my work and in my social environment. What surprised me the most was just how little I knew about hepatitis in general, which is what inspired the cartoon below: ‘Education beats hepatitis C!’ Jamie Burford
Cartoon © Jamie Burford
Hepatitis C Community News 16 • July 2009
services and group programs. Liaison with other services to promote appropriate and “youthfriendly” services is a fundamental part of our work. We are also contracted to provide clinical services at the Magill and Cavan Secure Care Training Centres. Confidentiality has been identified as a major issue with young people. On the first consultation, the client is made aware of Your Rights and Responsibilities: A Charter for South Australian Public Health System Consumers. Clients are also informed on the limits of confidentiality. Workers are required to adhere to legal responsibilities outlined in government legislation. The Second Story provides community health workers who give accurate health information, referral and support, on the Youth Health line. The Youth Health line operates 24 hours a day, seven days a week. Call 1300 13 17 19, or for mobile users 8303 1691 (normal rates apply). The ‘Inside Out’ project is for young men under 26 who are gay, bisexual, transgender, attracted to other guys, or questioning their sexuality. Inside Out includes counselling, workshops, support groups, advocacy, HIV/AIDS counselling and testing, and links with other agencies. ‘Evolve’ includes programs and drop-in groups aimed at bringing together same-sex-attracted women, or those questioning their sexuality, aged 16 to 26 years, to discuss issues of same-sex attraction and to provide health information and support. A History of The Second Story Youth Health Service For the most part, health services for young people in South Australia were fragmented before 1985, and many young people felt disenfranchised. CAFHS’
Adolescent Team offered a limited health service to young people, as did community health centres, local councils, local community groups, GPs and the Family Planning Association. Community health and youth workers, aware of the lack of co-ordinated health services available for young people living in SA, began to lobby the state government for discrete funding to be made available for the provision of youth-specific health services. It was subsequently identified by a ministerial working party that in SA there was a range of major issues facing young people and a need for a specific service whose environment would encourage (rather than discourage) young people’s access, with a multidisciplinary staff with skills required to work with young people. It was also concluded that it was necessary for a youth health centre to reflect the fact that young people’s health is affected by a range of factors (such as housing and employment), and that these factors must be addressed in order to provide a holistic approach to health care. And so in the early 1980s the then Health Minister visited a Youth Service called the ‘The Door’, based in New York. This Manhattan centre was a community-based multi–service centre, whose service model essentially involved the provision of comprehensive and integrated services while developing linkages with and among existing service systems.
LOCATIONS The Second Story (TSS) Youth Health Centres: Call 1300 13 17 19, or to make a GP appointment, the relevant number below. Central 57 Hyde Street Adelaide 5000 Tel: 8232 0233 North Gillingham Street Elizabeth 5113 Tel: 8255 3477 South 50A Beach Road Christies Beach 5165 Tel: 8326 6053 West 51 Bower Street Woodville 5011 Tel: 8268 1225 All clinics open 9am-5pm, Monday to Friday.
The idea was brought back to South Australia, and a service to meet the health needs of young people between 12 and 25 years was opened in 1985 by the then Premier, John Bannon, on the second floor of a building in Rundle Mall: hence the name ‘The Second Story’. Hepatitis C Community News July 2009 • 17
Are you happy with your GP? If you are, we need to hear from you.* We are updating our Hep C-friendly GP list for metro and rural areas. Individual Membership will continue from year to year without the need for renewal, as long as contact details provided remain current. You are able to resign your membership at any time. To update contact details for continuing membership or to resign your membership, please phone HCCSA Administration on 8362 8443.
Please call Deborah on 1300 437 222. *We approach GPs for permission before putting their names on our list, and we do not reveal who nominated them.
Hepatitis C Community News 18 • July 2009
Useful Contacts & Community Links Hepatitis C Council of SA Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. Call the Council’s Info and Support Line for information on 1300 437 222 (for the cost of a local call anywhere in SA). MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds. (08) 8223 4566 Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic. (08) 8223 5011
Clean Needle Programs To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340 Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809 SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 1699 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program. (08) 8447 8821 The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443. Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities. (08) 8362 0395 AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611
Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services. The Council offers a meeting room suitable for workshops, presentations, formal and informal meetings. It is a spacious area suitable for up to 30 participants.
Meeting Room Hire at the
The room has modern, self-contained kitchen and bathroom facilities. It also contains an electronic whiteboard, and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability). Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.
Community members affected by hepatitis C are encouraged to use the room at no cost.
Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au Hepatitis C Community News July 2009 • 19
ONE DAY, AFTER work, Jack is walking along North terrace...
what on earth is that?
what the... hepatitis c council? hepatitis C INFO line? i didn’t even know there was such a thing!
Hepatitis C Community News 20 • July 2009
to be continued!