HEP C COMMUNITY NEWS Winter 03
Seeing Red! Feeling Panic
Identifying our strengths and revving up the response
Not a nut loving Liver page 6
Rural News A Lonely Place: Being diagnosed in rural SA
Hepatitis C Community News
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Do you enjoy reading the Hep C Community Newsletter but always want to read more? Check out the Hepatitis C Council of NSW "Hep C Review" online at http://www.hepatitisc.org.au/reviews/reviews.htm
Cover picture taken of a section of Adelaide’s inner Green Belt.
We welcome contributions from Council members and the general public. Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of S.A. Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.
Hepatitis C Community News
Under new Management
y the time this newsletter goes out I will have been in the position of Manager at the Hepatitis C Council of SA for around 4 months. It has been for me an interesting, challenging and rewarding time. It is always interesting to reflect on community organizations and how they evolve over time. They generally develop because a few people in a group care enough and are passionate enough to want to do something about an issue that affects them either directly or indirectly. The Hepatitis C Council of SA is no exception, although it is now 10 years since the first meeting of what was to become the council the passion and commitment remain. It is this passion that has attracted me to working with community groups but what is different with this team is the depths of warmth and compassion that accompany their commitment.
It is a place where anyone can feel safe and protected, it is by far the most caring environment that I have ever worked in. The other area that has left me feeling quite overwhelmed at times is the amount of knowledge and expertise that exists within the council. It is a credit to those few people who approx 10 years ago decided to make a commitment to a cause and they should feel proud of the ongoing commitments and achievements of the council. For me, I feel privileged to be given this opportunity to follow both Kerry and Liz in the chance to continue the growth of the council while we ensure we maintain the commitment and passion that it stemmed from. Laurie
Next Annual General Meeting Thursday 25th September 2003 Timeâ€Ś Venueâ€Ś Addressâ€Ś
6.30pm Fullarton Park Community Centre. 411 Fullarton Road. Fullarton.
Hepatitis C Community News
Volunteer News South Australia’s volunteers contribute a whopping 850 million to the South Australian economy every year. More than a quarter of a million people volunteer their time each week in a wide range of roles, particularly in the field of sport! Here at the Hepatitis C Council of South Australia we have 8 current volunteers. There are a range of programs that volunteers can become involved in. Specifically, two areas that utilise volunteers here at the Council are the Information and Support Line program and the Resources program. We currently have four volunteers on our Information and Support Line, which is a Hepatitis C information service running between 9am and 5pm Monday to Friday. (8362-8443). The other four volunteers work in the resources program. This program covers mailouts and filling resource orders received from other organizations. The program also conducts resource drops to relevant organizations, tailoring resource packages and delivering them free of charge to community health centres, drop in centres and other community based organizations. Over the next month, we will be conducting resource drops in Victor Harbour/Goolwa, Murray Bridge, Mount Barker and throughout the Salisbury/Elizabeth region. Volunteers at the Hepatitis C Council of SA undertake a wide range of training and development activities to strengthen their skill base. This month alone, volunteers have attended programs ranging from basic computer training to advocacy and dealing with challenging behaviours. Several volunteers are also enrolled in the nationally accredited Certificate 4 in Community Services. (Community Work) The volunteer program at the Council has recently been independently evaluated and is now being reviewed internally. Part of this process will happen through a participative, externally facilitated planning day. Council volunteers will be able to nominate a range of projects that they wish to undertake as volunteers whilst on their rostered shifts.
Whilst the program is currently being restructured, we are unable to recruit new volunteers. However, if you wish to find out more about the program or to put your name down on a waiting list to join the program, please contact Janette Chegwidden, the Volunteer Coordinator, on 8362-8443.
First South Australian HCV Strategy The first South Australian HCV Strategy is currently being developed by HIV, HCV & Related Programs (HHARP) for the Department of Human Services. The Strategy will complement and extend the blueprint for action laid down by the National Hepatitis C Strategy. The Strategy is based upon evidence of best practice and continuing gaps in HCV program delivery across prevention, care, disease surveillance, research, workforce development and broader community education. It is intended as a “Whole of Government” policy framework based on a shared vision of issues, priorities and partnerships needed to respond to HCV in a sustainable and effective manner. An advisory group convened by HHARP provides expert advice on all aspects of the policy’s development. Council is represented on the Strategy Advisory Group. The document will be released for public consultation that is a mix of Web-based input and forums to be held for service providers priority populations and communities. With the assistance of the Advisory Group, HHARP will integrate this feedback into a final draft for the Minister’s consideration and endorsement. This should then be put forward for Cabinet to consider and endorse for launching as a public document. HHARP will work with Council to ensure thorough consultation with affected community members. Author: Kirsty Hammet Senior Project Officer HIV, HCV & Related Programs Communicable Disease Control Branch Population Health Department of Human Services
Hepatitis C Community News
Hep C and Plasma Report Extract from the Report of the Expert Advisory Group on Hepatitis C and Plasma in 1990. This is a direct extract from the above report and may be of interest to our readers. The reference to the Minister refers to the Federal Minister for Health
Further matters for consideration by the Minister As part of our inquiry we interviewed people who were affected by hepatitis C and spoke movingly and convincingly of the personal health and social consequences of HCV infection and subsequent liver disease. We have taken into consideration the numerous reports, policy documents and results of inquiries into hepatitis C, as a result of the impact of this disease on our citizens, the considerable unmet needs and the immensity of the problems ahead, and we have listed further matters for consideration by the Minister. That the Minister review progress for the implementation of the National hepatitis C Strategy 1999/2000 – 2003/2004 with a view to full implementation as soon as possible. !
That the recommendations contained in the Report of the Working Party on the Supply and Use of Factor VIII or IX in Australia 2002 be implemented as soon as possible.
That there be expedited consideration of the anti-HCV drugs so that Australian patients have timely access to treatment recommended by guidelines of international best practice.
That the Commonwealth support focused research into some aspects of hepatitis C, and in particular,
- clinical research into the prevention of hepatitis C co-morbidity from factors such as alcohol, weight gain and diabetes. The risk of transmitting infectious diseases through blood transfusions will probably never be completely eliminated. However, the risk in Australia has been greatly reduced. The use of blood and blood products in health care will always remain a balance of risks. The extremely low risk of transmitting a viral infection in Australia (described in section 5.6) must always be compared with the possible life threatening consequences of not receiving a transfusion. This report has now been released and a full copy of the report is available on the web at http://www. health.gov.au/hsdd/bodt/pdf/hepc.pdf or in the Council’s library.
Federal Budget 2003-2004 The Council is really pleased to note that for the first time the Federal Government has recognised hepatitis C in it’s own right in the Federal Budget. Until this year all funds for hepatitis C both nationally and at a state level have been diverted from AIDS funding. The federal budget has allocated 15.9 million dollars over the next four years. How much of this will filter down to the state remains to be seen. It is however important to recognise that no matter how large or small the amount, it is a milestone for hepatitis C to have this recognition.
MOSAIC DOWN SOUTH
- research to allow the level of medical and psychological disability to be quantified and monitored appropriately.
MOSAIC Counselling is now providing regular appointments at Noarlunga. Anne Bourne, Senior Counsellor with MOSAIC will be based at Noarlunga Health Village fortnightly on Thursday afternoons; evening appointments will be available on request.
- liver cancer research to monitor cancer rates and study ways to prevent the anticipated doubling of HCV-related liver cancer in the next 10-20 years.
If you would like to make an appointment to see Anne at Noarlunga, contact Relationships Australia on 8223 4566 and ask for an appointment with MOSAIC Counselling at Noarlunga.
Hepatitis C Community News
News in Brief New liver not a nut lover An Australian man who received a liver transplant developed a life-threatening nut allergy apparently passed on through the donated organ. The liver donor was a 15-year-old boy whose own allergic reaction to peanuts had caused his death. His organs were donated to four different patients, but only the recipient of the liver acquired the nut allergy. Dr Tri Giang Phan and colleagues from Royal Prince Alfred Hospital and the University of Sydney report on the case in the January issue of the Archives of Internal Medicine. The surgeons in this case did not know the donor had an allergy to nuts prior to performing the operation. The recipient of the liver was a 60-year-old man with chronic hepatitis B and a liver tumor. A day after he was sent home from the hospital, the man developed a severe allergic reaction after eating cashews. Nuts had been a regular part of his diet prior to the transplant, causing no problems. He was taken to a hospital and treated for tightness in his throat, blurred vision, nausea, vomiting and diarrhoea. Tests confirmed an allergy to cashews, peanuts and sesame seeds. The patient was sent home with an epinephrine shot to self-inject in case of a future allergic reaction. He had to use the shot again 32 weeks after his transplant; this time he was accidentally exposed to peanuts. To prevent such potentially serious allergic reactions after liver transplantation, Phan’s team recommends that screening for allergies be included in the donor-selection process. Archives of Internal Medicine. 2003;163:237-239. !
Abridged with thanks from Reuters Health via HEPV-L
Article first appeared in the Hepatitis C Council of NSW, “The Hep C Review” Autumn Issue, March 2003, Edition 40 page 8.
Sexual transmission of HCV: 16 April 2003 Michael Carter Not a single case of sexual transmission of hepatitis C virus (HCV) was identified in a ten year study conducted amongst 171 Spanish heterosexuals who had a regular partner who was infected with both HIV and HCV. The study is reported in the April 2003 edition of the journal, Sexually Transmitted Infections. However, the same journal also reports an investigation conducted in Miami, Florida which found that having an HCV-positive sexual partner was a risk factor for acquiring the infection, and a case report of an HIV-positive man who became infected with HCV after sharing a treatment for erectile dysfunction which is administered by insertion into the urethra. These studies look set to add to the debate about the sexual transmission of HCV, which is thought to occur at a higher rate amongst people infected with HIV. Evidence for this was recently the subject of a special issue of AIDS Treatment Update. Investigators in Madrid monitored 171 heterosexual couples, where one partner was positive for both HIV and HCV and the other negative, between 1991 and 2001. The same cohort of patients was monitored for oral transmission of HIV without a single case being attributable to this cause. At six monthly intervals both partners were interviewed about their sexual behaviour. They were asked if they had had anal, oral, or vaginal sex and whether a condom had been used. Data on condom breakage or slippage were also obtained. Over 529 person years of follow-up were counted and over 40,000 instances of anal or vaginal sex were reported. Sex without condoms was frequently reported by the couples in the study, with 43.3% reporting anal or vaginal sex without protection and a little under 70% oral sex without condoms. In addition, condom accidents were reported by 27% of study members. Over 5,800 incidents of unprotected anal and vaginal sex were calculated to have occurred and unprotected oral sex was estimated to have happened 25,000 times. Although 31 women became pregnant and one case of HIV seroconversion occurred, not a single case of HCV transmission could be identified. The investigators calculated that unprotected anal or vaginal sex had
Hepatitis C Community News
the debate continues an HCV seroconversion rate of 0 to 6.3 per 10,000 unprotected intercourses and unprotected oral sex a rate of 0 to 1.4 per 10,000 intercourses. The investigators conclude that these results do not enable us to exclude the possibility of HCV transmission through sexual intercourse in heterosexual relationships, but do suggest that this transmission mechanism is inefficient, even when the index case is HIV co-infected. HCV amongst sexual health clinic patients in Miami However, a study conducted amongst 687 people attending a sexually transmitted infections clinic in Miami Florida, found that along with injecting drug use and spending time in prison, sexual contact with an HCV infected person was a risk factor for becoming infected with HCV. The study was conducted in early 2001, when clinic attendees were asked to complete a questionnaire about their demographic background and HCV risk activity. They were then tested for HCV, with 4.7% testing positive, which is consistent with rates of infection amongst sexual health clinic patients in the US. Being aged over 30 and being a non-Hispanic white were the only demographic characteristics associated with HCV infection. When the results were subjected to multivariate analysis, only injecting drugs, spending a day or more in jail, sexual contact with an HCV-infected person, and older age remained associated with an increased risk of being HCV-positive. When sexual contact with an HCV-infected person was controlled for spending time in prison or injecting drug use, it was still found to be significantly associated with an increased risk of becoming infected with HCV.
Impact of smoking on liver in hepatitis C Smoking could aggravate the activity of chronic hepatitis C, find researchers in the January issue of Gut. In this study, a research team from France examined the association between smoking and histological (liver cell and tissue) lesions in chronic hepatitis C. The team studied 244 people with proven chronic hepatitis C. They recorded daily tobacco consumption (number of cigarettes smoked daily) during the 6 months preceding liver biopsy. In addition, the researchers graded liver biopsy specimens for histological activity (cell & muscular damage) and fibrosis using the Metavir scoring system. They found that the proportion of people with moderate (A2) or marked (A3) activity increased gradually from 62% in non-smokers, to 82% in those who smoked more than 15 cigarettes per day. A similar relationship was observed for total lifetime tobacco consumption. Further analysis showed that age over 50 years, alcohol intake exceeding 20 g/day, and tobacco consumption of more than 15 cigarettes/day were independently related to the histological activity (liver damage) score. The researchers concluded, “This study suggests that smoking, independent of alcohol, could aggravate the histological activity of chronic hepatitis C”. “Patients with chronic hepatitis C virus infection should be advised to reduce or stop smoking.”
Abridged with thanks via the HEPV-L internet email list.
Impact of smoking on histological liver lesions in chronic hepatitis C. Gut 2003; 52: 126-9 !
Abridged from a Gastrohep article via HEPV-L
Article first appeared in the NSW “The Hep C Review” March 2003, Edition 40, page 24.
Hepatitis C Community News
Identifying our strengths and revving up the response A speech delivered by Jack Wallace, Executive Officer Australian Hepatitis Council, given at the Third Community Conference on Hepatitis C.
People with hepatitis C come from all walks of life. This we all know. Well, all of us here in this room know that. We work in the public and private sectors; we have a range of sexual identities and preferences; come from a range of cultural backgrounds; live in inner city enclaves and in major regional centres. People with hepatitis C live in upper class areas and drop their children to school in new four wheeled drives, while others use homeless shelters and shopping trolleys. We reflect the complex experiences of the Australian community. People with hepatitis C may identify with their current or former injecting drug use while some people with hepatitis C have never injected drugs. For some people with hepatitis C, injecting is part of their daily life, and that of their social networks. For others their former injecting drug use is something they choose not to disclose to even their closest family and friends, and yet for others it may form a special and unique part of their history. The diversity of people with hepatitis C is our strength. Sadly, it is also in our numbers that our power is derived. !
We, people with hepatitis C, are a constituency, a lobby group, a community, of a quarter of a million Australians.
That is a quarter of a million people INFECTED with hepatitis C. But our community, which includes people affected by hepatitis C. Each and every person with hepatitis C has a network of people and of access to various levels of power in their life. Many people are not consciously aware that they have access to power and influence. Most people do not know what to ask for even if they knew they had this power to influence. And this is a key task if we are to ever gain the respect, services and resources that we are entitled to. !
The objective of the sector is to identify the avenues to power we have available, and then what to ask for when we get there.
Can you imagine a group of lawyers (for whom there is less than a quarter of a million) not being aware of what they were entitled? Okay, so lawyers might not be a great example. What about teachers? Or construction workers? Imagine that a new virus has been introduced into Australia. It is transmitted by drinking wine. It has largely affected young women; its symptoms can be debilitating and will affect their capacity to contribute to the Australian community and its overall productivity. A small percentage of these young women will die as a result of this new disease, after a long and painful illness. Every woman under 35 in Melbourne is affected. The transmission of this disease can be prevented; and young women can change their behaviour to reduce their risk of being infected. Imagine for a moment the political and public response. Apathy? Discrimination? Maybe politicians will suggest that it was the young women’s choice to drink wine, and they deserve the consequences? Not likely. There would be outrage at all levels within the community. Young women who are infected with this virus are experiencing a very low quality of life and some are dying. This disease, like hepatitis C, is preventable. Parliamentarians and public health officials would say - “We need a wide ranging education campaign about safe wine drinking”. Significant research funding is immediately provided to look for better ways of preventing the transmission of the virus, treatments would be made available for every young woman who needs it, and funding for research into vaccines and cures is dedicated. Strategies and funding comes from the government, because we can’t have generations of young women wine drinkers dying of a preventable disease. Young women would mobilise together and DEMAND support services, access to welfare and world class health service delivery. After all, we are a first world country with a universal health care system. Aren’t we? The situation with hepatitis C is fundamentally the same.
Hepatitis C Community News
(Continued on page 9)
Infection with hepatitis C is completely PREVENTABLE. As we speak, new infections are of EPIDEMIC proportions, particularly among young Australians. Support services, delivered by entitlement to other sectors and people with health conditions, are carried by the community sector with some Government support. Research into treatments and vaccines are poorly supported and funded. Social research is rare and when it is done is leapt on with eagerness. So how did we get here? A strong, diverse, large and vibrant community, but with limited public and political support and resourcing. We can limit what we think we deserve, both on a personal and community level. This can translate into asking for much less than we are worth. Self limiting behaviour at a sectoral and lobbying level feeds upwards from the community at an individual level. As a result of systematic and continuous discrimination and poor service provision, people with hepatitis C can come to believe that this is all they deserve. In other words, over time, people with hepatitis C shrink their expectations to match previous experiences. This is a natural defence mechanism. We are less likely to be disappointed if we have low expectations to start with. However, the low expectations can hold us back. Personally, self-limiting behaviour happens to me on a regular basis, and in a variety of areas in my life. Recently its been an issue for me when visiting federal politicians, and I become aware that some of my history and experiences are something that most of them have railed against at one time or another. My usual bolshie communication skills become timid and I’m keenly aware of the marginalisation that I have felt for much of my life. I am waiting to be judged harshly, and yet am often delighted at the positive response I receive from these people. Self-limiting behaviour can no longer hold me or us back. We can’t afford to limit ourselves - other people will try and do that. The experiences of people with hepatitis C as we all know range from individual discrimination from family and friends to receiving poor
information and service from health care professionals to being personally aware of how little political will there is to address hepatitis C. As far as I’m aware, unless someone can enlighten me of changes made since I left Canberra yesterday, Australia still claims to have a universal health system. This is an old fashioned socialist concept whereby a citizen receives health care based on their need for it. There are no other qualifications. You don’t have to earn above or below a certain amount. You don’t have to be a man or a woman. You are supposed to be able to live anywhere you like. Universal implies no qualifications. It doesn’t matter WHY an Australian citizen requires health care, it is the NEED that is measured. Former or current injecting drug use, whether it be real or implied, is of no relevance in the current system. Basic, necessary, primary health care is a right of all Australian citizens. As a community who is often denied this basic right, or who have these services provided with disdain, it is imperative that we don’t lose sight of how our health system claims to work. It is important that we reclaim our position as citizens with rights, and not health consumers with purchasing power. It is the job of politicians to sell their policies to the electorate; part of our job at the Australian Hepatitis Council is to sell the problem so that politicians know the reality of hepatitis C. It is not all doom and gloom for the hepatitis C sector. We have some incredibly powerful arguments. Arguments that we, at the Australian Hepatitis Council, will continue to make in every forum that becomes available to us. !
New infections are spiralling out of control. We have had a 45% increase in new infections in recent years. In 1997 it was estimated that there were 11,000 new infections of hepatitis C in Australia. In 2001, that figure was 16,000 new infections. Hepatitis C is still Australia’s most frequently reported notifiable communicable disease. The Commonwealth government’s commitment until now to hepatitis C has been $12.4 million over four years. That equates to just over $10 per person with
Hepatitis C Community News
Feature Article cont.
hepatitis C, per year of funding - we’d do better at a chook raffle. The fastest growing demographic of new infections are amongst young people, under the age of 25. 2003 will be the first year people will die waiting for liver transplants. There will be more people needing liver transplants than there will be livers available.
So who do we make these compelling arguments to? The short answer is: Anyone who will listen! We have access to a variety of possibilities. At an individual level, the value of the education we do with our GPs, family and colleagues is invaluable. You can never anticipate how far sharing your understanding and knowledge about hepatitis C will go. Maybe your nurse contributes to the professional development programme in their hospital? Maybe they will be training their colleagues? It is always best to assume that your voice is being heard and that they are in a position to make change. As voting members of the public, it is impossible to underestimate the power of your local state and federal members. Letters have to be opened and answered. You may get a standard pro forma response. As the national peak body, we get standard pro forma responses from politicians; what we do is to ignore the response, and arrange a meeting with them anyway. However, the letters are still opened and your view noted. It is the volume of letters that make the difference. At a systems advocacy level we are represented on the Australian National Committee, and the Intergovernmental Committee on AIDS, Hepatitis C and Related Diseases. We work with drug companies, Ministers, parliamentarians, other non government health, welfare and discrimination bodies and federal government departments. We make our arguments, with what we hope is the weight of the community behind us, and as powerfully as we are able. Sandy Gifford this morning mentioned poor policy development at a national level. I think the national hepatitis C strategy is an example of good policy development, but shocking implementation. The strategy was developed after broad Australia
wide consultation with the range of people with a stake in hepatitis C; submissions were called for and developed and public meetings attended. And then the political commitment and political will ran out. What we’ve been doing at the Australian Hepatitis Council is revving up politicians. Tell them the facts; tell them about the response or lack of response, and suggest things they can do. Jill Meade mentioned this morning that it is the job of politicians to sell their policies to the electorate. Harm reduction is a fundamental part of Australia’s response to hepatitis C. This policy is perceived as being difficult to sell to the community, but it only takes courage and leadership for this to occur. In his foreword to the C-Change report into hepatitis C related discrimination, Chris Puplick the President of the NSW Anti-Discrimination Board said What we are essentially calling for is a major transformation in public policy – one which refuses to accept that discrimination is the inevitable companion of hepatitis C infection and one which asserts that the level of hepatitis C related discrimination, which this Enquiry has identified, cannot be tolerated any longer. The key to his message is that we need to refuse to accept discrimination as inevitable. When we refuse to accept this discrimination, we also refuse to accept that access to treatment should be difficult, that young people aren’t receiving hepatitis C prevention education and information, that hepatitis C research should be poorly funded and that we should have an unfunded national strategy. It sometimes feels that if hepatitis C is ignored for long enough that it will go away. It won’t and your commitment by being here reflects that. We can use the power we have to ensure that people with hepatitis C can reach their potential and that noone else need be infected with hepatitis C. Speech co-authored by Jack Wallace, Executive Officer Australian Hepatitis Council and
Danielle Elston, Policy and Advocacy Manager Australian Hepatitis Council
Hepatitis C Community News
Of Interest The Australian Alcohol Guidelines now specifically mention Hep C. As mentioned under Guideline 4 If you have hepatitis C, or another form of chronic viral hepatitis, you should consider drinking only infrequently and well below the levels recommended in Guideline 1. Guideline 1 To minimise risks to your health, both in the short and long term, and to gain any longer-term benefits to your health For men • No more than 4 Standard Drinks a day on average and no more than 6 Standard Drinks on any one day* • One or two alcohol-free days per week. For women • No more than 2 Standard Drinks a day on average and no more than 4 Standard Drinks on any one day* One or two alcohol-free days per week. *These drinks should be spread over several hours. For example, men should have no more than 2 standard drinks in the first hour and 1 per hour after that. Women should have no more than 1 standard drink per hour.
Teaching about hepatitis C: a national survey of secondary school teachers Hepatitis C is a significant public health problem in Australia and it is essential that information about the virus and associated risks is provided to the community. A potential key target audience is secondary school students. If issues related to hepatitis C are to be taught in secondary schools, teachers need to be well-informed and have the necessary resources. A survey research design was used to provide descriptive data on teachers’ hepatitis C knowledge, attitudes, beliefs, and behaviours via a self-completion mail questionnaire. Health education and sex education teachers in all States and Territories were recruited. These teachers reported that there was little being taught about hepatitis C in their schools and few of the teachers surveyed taught about this topic. Teachers were reasonably well informed, although there was evidence of conflating HIV and hepatitis C issues, and they believed that it was important for schools to include hepatitis C in the curriculum. Teachers reported that there were few opportunities for professional development and few appropriate curriculum resources to assist in teaching about hepatitis C. Barriers to including this issue in the curriculum were perceived to be structural.
NOTE: Guideline 1 assumes that you: • are not about to undertake any activity involving risk or a degree of skill, including driving, flying, water sports, skiing, using complex or heavy machinery or farm machinery etc • do not have a condition that is made worse by drinking, or a family history of alcoholrelated problems • are not on medication • are not pregnant • are 18 years or older
Among this sample of teachers there is recognition of public health concerns about hepatitis C and the need for prevention education for young people. There is also a willingness on their part to support the inclusion of hepatitis C in the curriculum.
Abridged with the permission of the Department of Health and Ageing
For more information the complete Guidelines can be viewed on the internet at http://www.alcoholguidelines.gov.au/
Mechanisms need to be put in place in schools to assist teachers in teaching about hepatitis C. These include providing appropriate professional development and curriculum resources, as well as giving consideration to the most appropriate place in the curriculum for hepatitis C prevention education. Teaching about hepatitis C: a national survey of secondary school teachers. Dosenthal, D. et al. Health Promotion Journal of Australia. 2002: 13(3) 214219
Article first appeared in the Hepatitis C Council of NSW, “The Hep C Review” Autumn Issue, March 2003, Edition 40 page 22.
Hepatitis C Community News
Rural Update A Lonely Place: Being diagnosed in rural SA I live in a South Australian regional centre. In October 2002 my doctor told me I have hepatitis C. I couldn't have been more stunned if I'd been punched in the head. After he gave me the news, he continued to talk but I couldn't take in anything he was saying, his voice seemed to be really faint. When he stopped talking, I asked what this means, that I have hepatitis C. He told me he didn't really know, but it has some serious implications. I asked him if this could kill me. He said yes, it could. I asked what the prognosis is, and he said he thought it was good. But then he said he just didn't know enough about it to inform me and said I needed to go and have another blood test. He said it is a notifiable disease and told me I should talk to my partner. He gave me the name and phone number of an Adelaide specialist and also a pamphlet to read. I remember very little of the next couple of hours. I walked from the clinic to the blood test laboratory and gave a blood sample. Then I walked back to work and told my boss something had come up and I needed to go home. I rode my pushbike home but I have no memory of it. I rang my partner up at her work and told her. This was at about 5.00 pm. She wasn't due home till nearly midnight. I tried to behave normally around my kids. I surfed the net for information. I found plenty of dry, unemotional medical articles. They were all quite grim describing the course of the disease. I kept on seeing the words "cirrhosis" and "cancer", over and over again. By this time I was just weeping. I thought - "I'm fâ€Ś., I'm going to die of liver cancer". The shock had worn off and now I was sliding into despair. I had no-one to talk to. I've never felt so bad in my whole life. After about an hour on the net, I came across the website for the Hepatitis C Council of South Australia. The website invited people to email. I sent an email off which reflected my grief and confusion. I asked that someone reply to me. When my partner got home later that night, I was sitting up in bed, holding a book but unable to read it. She didn't touch me, which wasn't very helpful. I guess she didn't know what to do or think.
The next morning I went in to work early to catch my boss alone. I told him the news and that I might not be in for a few days. He was pretty good. He had come out of a job in the prison system and so he had a better than average awareness of hep C. At that stage I had no idea I needed to be careful who I told. I was very lucky this guy is well informed, and respects privacy and confidentiality. He's since left. If I told my current manager, she'd start wearing rubber gloves and a gas-mask to work. I told my 3 teenage daughters the news. I didn't do a very good job, it all got a bit fraught. Later that day, I read a wonderful email from the Hep C Council. It was written by Leslie Wightman, who suggested I ring her the next morning, which I did. From then on, things started to slowly look brighter. Leslie was able to tell me that many people are living with hep C, that most people learn to manage and get on with their lives and that for some people there are treatment options. She told me that the specialist I was referred to was very approachable and would be very helpful. She put a large amount of information in the post for me, which helped a lot. Leslie made a time for me to visit the council on the day of my specialist appointment in Adelaide. On that day I met a lovely person who was able to give my partner and me some re-assuring feedback about living with hep C. Nothing was glossed over, we heard the good and the bad, but I felt that with this meeting, combined with my first consultation with the specialist, I was being empowered with clear information, delivered in a beautiful supportive manner. I know a lot more about my condition and prognosis now. I have now managed to "compartmentalise" the knowledge of this virus so I don't have it on my mind all the time. I have undergone some huge changes in the way I think and perceive. Everything has changed since my diagnosis. Nothing is the same. Living in a small community, it's very hard to talk about this eyeball to eyeball. It's difficult to maintain your privacy at the best of times. Having hospital staff, test lab staff and medical clinic staff all know I have hep C is difficult to ignore. I have to trust they are all professional enough to maintain confidentiality. I wouldn't bet my house on it.
Hepatitis C Community News
(Continued next page)
It is very comforting to have lovely close friends and family to give me unconditional love and support. I've certainly learnt who my friends are. A couple of people fell at the first hurdle, and they are now out of my life. It is also great to have the Hep C Council and its wonderful staff as a resource and a support. I don't know how I - and my family - would have got through the first few
Hepatitis C diagnosis in rural settings Rural Educator, Leslie Wightman explores the issue of diagnosis in rural areas further. Peter’s story highlights a number of experiences that are common to people who have been newly diagnosed with hepatitis C in both rural and city settings however there are a number of factors which combine to make the rural experience of diagnosis quite unique.
Choice People in rural locations usually have limited choices between doctors and other sources of support and information. Soon after diagnosis, individuals are usually keen to establish a relationship with a medical practitioner who they can trust to provide ongoing, accurate information in a respectful and holistic manner. Unfortunately, to the contrary, it has not been uncommon for people with hepatitis C to express concerns about the attitudes of GPs they have approached, including the issue of injecting drug use. Staff at the Hepatitis C Council have spoken to a number of people who feel they have had no other choice than to travel long distances to Adelaide to visit a GP who has more up-to-date information and, in some cases, for reasons of confidentiality. Unfortunately resident and/or visiting specialists are also nonexistent in a number of regions throughout South Australia. This may involve quite a number of trips if the individual is considering going on a treatment program.
Quality of information As in Peter’s story, many GPs do not have ready access to current information on hepatitis C nor an appreciation of the significance of the
weeks without them. I'm looking forward to calling in on them again, next time I'm in Adelaide.
Peter (Not real name)
diagnosis experience. For most people the period of testing and diagnosis is an emotionally challenging time and to be given inadequate information and support amplifies the level of distress experienced. In Peter's case, access to internet technology and the ability to search out information, provided him with another means of identifying useful points of contact. Many other people don’t have such access. Even though a number of resources distributed over the past five years have advised GPs about the value of appropriate pre and post-test counselling and information, there is obviously still much more work to be done in this area. It is known that the quality of the diagnosis experience can strongly influence the way a person 'lives with' hepatitis C into the future.
Confidentiality As Peter suggests, an individual being diagnosed with hepatitis C in a rural setting relies heavily on the professionalism of staff in health care settings. Unfortunately, like Peter, a number of people have expressed a lack of confidence in the capacity of some workers in these settings to maintain privacy and confidentiality. Some workers have even identified themselves that they would also feel nervous being diagnosed with something as stigmatised as hepatitis C because they too have observed serious breaches of confidentiality. In small rural settings, the impact of a diagnosis such as hepatitis C can have serious implications for the individual's local relationships as well as for his/her family. Luckily for Peter, his disclosure to his employer was well handled due to the employer’s level of knowledge. Unfortunately this is not true of all employers. Other people have been met with less than favourable responses including breaches of confidentiality to other workers
Hepatitis C Community News
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resulting in very uncomfortable work settings. It is important to be aware that most people are not required to disclose their hepatitis C status to anyone. It is up to the individual to decide if disclosure is appropriate - many people decide it is of benefit in relationship with people such as doctors and counsellors. The following are issues that should be addressed by GPs at the time of diagnosis. These points may also provide individuals with a prompt for useful questions. (These points are taken from page 72 of ‘Hepatitis C liver disorders liver health - A practical guide’ by Geoffrey C Farrell; 2002: MacLennan and Petty Pty Ltd) ! Deal with the emotional response after breaking the news. ! Explain the reliability of the result - is there a need for further testing. ! Interpret the meaning of the result. ! Further tests for cases unlikely to be due to hepatitis C infection. ! Lay the framework for constructive approaches to better health. ! Re-visit issues of virus transmission – the prevention messages. ! Continue education about the natural history of hepatitis C. ! Introduce or extend the concept of viral cure, hepatitis C is not a death sentence! ! Hear and respect the affected person’s own major concern. ! Provide take-away materials-written educational brochures, phone contacts for client-based support systems, websites. ! Ensure personal ‘support system’ in place for the initial ‘grief reaction’; provide out-of-hours numbers for other support if this seems inefficient. ! Ensure the follow up appointment is timely and long enough. ! Invite persons to write down content-to bring a ‘shopping list’ of questions. For more information about hepatitis C and relevant services, rural callers can contact the Hepatitis C Council of SA on the free-call number 1800 021 133. Leslie Wightman Rural Education Officer Hepatitis C Council of SA
MELBOURNE RESEARCHERS AWARDED U$1 MILLION FROM THE USA FOR NEW HEPATITIS C TREATMENT A group of Melbourne medical researchers have been awarded a grant of more than US$1 million from the National Institutes of Health in the USA to develop and test a new strategy to treat patients who are infected with hepatitis C virus (HCV). Current estimates suggest that approximately 230,000 Australians have been infected with HCV. There is no vaccine to prevent the infection and as a result, there were 16,000 new cases in Australia in 2001. Professor Eric Gowans, Head of Hepatitis C Research at the Burnet Institute said, “This is great news that a group of medical researchers in Melbourne has been awarded a highly prestigious grant from the National Institutes of Health in the USA. It is highly encouraging, and a real measure of the respect and standing that this group enjoys on an international basis.” Many people who are infected with HCV risk the development of serious liver disease, including cirrhosis and liver cancer. Although treatment has improved during the past 14 years since the virus was first discovered, treatment is expensive and is only effective in approximately 50% of patients. In addition, the side effects are very unpleasant and many patients complain of nausea and other alarming side effects during treatment, such as mood swings and severe depression. Because only a few patients can be treated, the resultant liver disease means that HCV is currently the leading single indicator for liver transplantation in the Western world. “Basically, the new treatment will explore a new way to boost and use a patient’s own immune response to eliminate the virus. We believe patients might require 3 injections over a period of one month as opposed to the current treatment which requires patients to receive regular injections for up to one year” said Eric Gowans. The overall project which will be funded for 3 years. During the first year, the research group will optimise the treatment strategy, and then recruit suitable Hep C positive people into the trial. The next two years will be used to treat patients and assess the outcome. The Burnet Institute is investigating some of today’s most serious viral infections such as HIV/ AIDS, hepatitis B, C, E and measles. Its HCV programs encompass all aspects of the biology of HCV and extend to the management of HCV in infected people. The Institute’s domestic (Continued next page)
Hepatitis C Community News
Seeing Red, Feeling Panic A Discussion group held by Mosaic Counselling Services Seeing Red, Feeling Panic is a catchy title for a very moving and empowering group discussion, which provided an opportunity for women who live with Hep C to talk about their feelings about and experience of menstruation. A small group of women met twice to share the struggles and challenges associated with menstruation that many women who live with hep C experience every month.
Sexuality and Intimacy Living with hep C can also have a big impact on intimacy and closeness - especially when you’re bleeding. Women in the group talked about how “before I got hep C I just wanted to be touched during my period - after I found out I was the opposite” “I get really horny and feel like I have to abstain – that’s a nasty trick!” “I worry about my period starting during sex”.
It was a very safe and supportive space to talk about how your periods can be a very isolating and fearful time. Menstruation is something of a taboo topic at the best of times – if you have hep C even more so. The group was a great opportunity to share our thoughts, feelings, and responses to bleeding; • “I worry about being rejected” “I want to be close but I push away” • “There’s the fear of contamination; cleaning up the shower, checking the toilet button and light switch for traces of blood” • “I feel dirty; I get angry and snappy; I have panic attacks” • “I get into excessive hand washing and clothes washing” • “I curl up in a ball and hide from everything”
In our second session it was great to hear that the previous discussion had a positive impact; “The first group made me aware that I am not alone – I felt more comfortable when I had my next period” “Since the first group I have been challenging irrational thoughts, such as expecting rejection” “Listening to other women’s experience really helped; it was empowering”
Some of the hassles women experience during menstruation relate to worry about how to dispose of things, how to manage when you are away from home on holidays; how long the virus lives; whether it stays alive in dried blood; and how best to clean up spills or traces of blood.
and international public health programs address important issues of disease prevention and health promotion. The Melbourne group, a consortium which comprises researchers from the Burnet Institute, the University of Melbourne, the Peter MacCallum Institute, the Red Cross Blood Transfusion Service and Monash Medical Centre were awarded the funds to trial a new method of treatment. They include: Professor Eric Gowans, Burnet Institute; Dr David Jackson, Dept of Microbiology, University of Melbourne; Dr
Where to from here? All of us agreed that it would be helpful for women affected by hep C to have good information - as well as acknowledgment of the feelings and struggles we experience around menstruation. We are planning to put together an information leaflet to include all the things we wished someone had talked to us about when we were first diagnosed. Anne Bourne, the Senior Counsellor from MOSAIC Counselling facilitated the group and is available to provide opportunities for women who wish to share their experiences, fears and frustrations about menstruation in a group or individual counselling. Contact Anne at Relationships Australia on 8223 4566. Lorena Brown, Dept of Microbiology, University of Melbourne; Dr Rosemary Sparrow, Australian Red Cross Blood Transfusion Service; Professor Derek Hart, Mater Medical Research Institute Brisbane; Dr Jia-yee Lee, Victorian Infectious Diseases Reference Laboratory; Professor Miles Prince, Peter MacCallum Cancer Institute and Dr William Sievert, Monash Medical Centre Media Contact: Media Enquiries: Stefan Swadzba, Public Relations, Burnet Institute. Tel: (03) 9282 2135
Hepatitis C Community News
New Resources Back by popular demand
The Guide to Healthy Eating for People with Hepatitis C. This booklet, developed by the Australian Hepatitis Council contains all kinds of useful info about current eating guidelines, nutritional information and how to be a good critic of diet and nutritional information. This booklet is one of many tools you can use to help manage your diet and maintain good health.
"Complementary and Alternative Therapies for Hepatitis C" contains some basic information about the range of treatment and types of services that are available outside the scope of Western medicine. Often people who live with a chronic illness such as Hep C will explore various options when making choices for their health. This booklet can help to identify some of the options that are available.
Copies of both booklets are now available at the Council. If you would like to order a copy, please give us a call on 8362 8443 or 1800 021 133 (SA regional callers). If you prefer you can email us at firstname.lastname@example.org
Hepatitis C Community News
HEP C and me. After 20 plus years in Darwin I thought our future was pretty well marked. I got married, we had a tribe of kids and had a good family business. That all changed in May 01.
I ended up going to hospital when these symptoms would not go away. I had heaps of tests done and was told I had Gallstones and Hep C. (HCV) Also they tossed in a bit of end stage liver disease (Cirrhosis).
Firstly I got really tired. Could not lift my head off the bed. Cold, fever, chills, diarrhoea and jaundiced. My whole body thermostat was out of control. I dead set thought I was gonna die.
As for now I am living in the southern suburbs of Adelaide and am being treated at the Flinders Medical Centre. Here I am now 18 months on and have been assessed for transplantation and I am on a clinical trial for a new drug to combat the Hep C virus.
I remembered something similar happening to me when I was about 17 or 18. I remember in those days in the mid 70s when everything was rough and ready. Tattoos and drugs were just the norm in the western suburbs of Sydney. I was no different to anyone else. I used drugs a couple of times and I got a few tattoos. They were pretty cool blokes but in those days I knew nothing of hepatitis let alone hepatitis C. I got very ill once and the doc said it was nothing to worry about. I moved away from where I grew up and I got an excellent job. I could no longer stand seeing the people I grew up with either overdose or end up in jail. I never touched drugs after I moved away.
A transplant is needed regardless of sustained response or not. The docs said I could have had this for 25 years or so. Along the way it has been hard at times to understand the amount of tests and medical procedures as well as the different drugs you must go through to find a balance in how your body is reacting to the changes in your body-chemistry with Hep C, and a liver that is barely keeping up with what is happening. Though it can be incredibly frustrating and nerve wracking at times, the wait and see game is what I find myself playing at the moment, for the time being anyhow.
After a few years I was off around Oz, ending up in Darwin. To cut a long story short, here I am in my mid 40â€™s with the biggest challenge of all.
Hepatitis C Community News
Meditation as a practice originated in ancient times. Today it is regarded as a particularly useful tool for relieving stress and tension that often prevail as a direct result of leading busy lifestyles. More recently people are turning to meditation for the specific purpose of improving their health and general well-being. (Devereux C and Stockel F, 1997:6). With a growing body of scientific evidence to back up the ancient wisdom, main stream sectors of our culture are taking meditation practice seriously. Newcomers to meditation may struggle with the unfamiliar techniques, or be inconsistent in the practice, resulting in disillusionment at experiencing no obvious benefits. However those that do persist are finding that the beneficial effects that they receive are well worth the effort. Benefits can include the reduction of anxiety levels in people who live with chronic illness, relief of stress, tension and a more restful sleep for people affected by insomnia. (Devereux C & Stockel F, 1997:8)) Meditation affects our physiology in subtle but obvious ways. After only a 10 minute session almost anyone should be able to say, â€œYes my muscles have relaxed, I am breathing more easily and my mind is less agitated.â€? Decades of substantial scientific research on meditation demonstrate measurable improvement in mind and body function as a result of the regular practice of meditation. It follows that meditation has far reaching benefits in the health area as well. (Harrison E, 2001:8) There are several sites on the internet where further knowledge can be accessed about this subject. The hepatitis C council runs regular meditation sessions on Tuesday evenings from 7:00pm8:00pm. Affected community are welcome to attend these sessions in order to learn how to meditate and access the accompanying benefits of the practice. For further enquiries about this contact Sharon Drage, on 8362 8443.
Hepatitis C Community News
April – Combo Therapy
How to Meditate
Catherine Bunting, Clinical Nurse Consultant, from the Viral Hepatitis Centre at the Royal Adelaide Hospital, spoke extensively about combination therapy. The session was well attended and very informative covering many aspects of the pre to post treatment procedures, including support from the Clinical nurse, the option of shared care with your own GP, testing during treatment, adverse effects during and after treatment and so much more.
What is this Test? November 5th
May – What are my rights? Franco Parrella, Training Services Coordinator, from the Equal Opportunity Commission, put into plain English what constitutes unlawful rather than unfair discrimination under the Equal Opportunity Act. The time limits on making complaints, the steps involved as well as exemptions to the Act were explained clearly. Franco gave an informal but very informative presentation including answering many questions which made a complex subject much easier to understand.
The Hepatitis C Council of SA sincerely thank Catherine Bunting, Franco Parrella and all our past Guest speakers for giving their expertise and time freely to our community.
Hepatitis C Community News
A Healthy Diet All Information Evenings are held on the 1st Wednesday of each month in a supportive, non-judgemental, friendly environment at the Hepatitis C Council of SA
4 The Parade Norwood 6.30pm—8.30pm 19
Hepatitis C Council of SA
Phone the Hep C Council for confidential information and support about hep C, as well as free written information. The Hep C Council also runs information and support sessions. Phone to find out about upcoming sessions. 4 The Parade, Norwood. Phone: 8362 8443 or 1800 021 133 (SA Regional Callers) Email: email@example.com Web: www.hepccouncilsa.asn.au
C-Clearly helps to coordinate the health care of people living with hepatitis C and people who may be at increased risk of infection with hepatitis C. CClearly can help you find a â€œuserfriendlyâ€? GP as well as access to a psychologist and a dietician. Phone: 8410 0466 or 0428 428 027 Email: William@careandprevention.org
The Adelaide Dental Hospital is a specially funded clinic for people with hep C who also have a Health Care Card to receive priority dental care. Some research on dental health is carried out at the clinic, however it is up to you if you choose to participate.
Free and confidential counselling for people with hepatitis C. Daytime and evening appointments are available. Phone: 8223 4566 and ask for MOSAIC
Adelaide Dental Hospital
Phone the Hepatitis C Council for a referral on 8362 8443
PEACE (Personal Education and Community
Empowerment) A Multicultural Program
PEACE provides support, education, information and referral services for culturally and linguistically diverse communities affected, or at risk of infection of hepatitis C and/or HIV. Phone: 8223 3433
SAVIVE (SA Voice for IV Education) SAVIVE provides peer-based support, information and user education. SAVIVE is a Clean Needle Program outlet 64 Fullarton Road, Norwood. Phone: 8362 9299 Email: firstname.lastname@example.org
Streetlink Streetlink is a service for people aged 12-25 years who are homeless or at risk of being homeless. Through Streetlink you can access information about hep C prevention as well as free medical and counselling services for you or your children. 28 Peel Street, Adelaide. Phone: 8231 4844 Email: email@example.com
[CNP] Locations for state-wide Clean Needle Programs Contact
ADIS [Alcohol &Drug Information Service] Phone 1300 131 340
Hepatitis C Community News