HEP C COMMUNITY NEWS Autumn 2001
Issue 16
Facts and fears in SA The SA Hepatitis C Awareness Week 2001 was held in the first week of March with a full program of events organised to spread the facts…not fear about hepatitis C amongst various groups in our SA community.
Day 1 The week of events was launched by the SA Health Minister, the Hon Dean Brown to a group of 60 people at The Lion Hotel in North Adelaide. Interstate guest speakers at the launch included Dr Greg Dore from the National Centre in HIV Epidemiology and Clinical Research and Jeff Ward President of the Australian Hepatitis Council presenting the medical and community perspectives on the facts and fears of hepatitis C. Deborah Warneke then gave her individual perspective on the theme. Deborah’s clear, self assured ‘voice’ told a story very familiar to many who have had to struggle with the facts and fears of hepatitis C. The humour and warmth of Deborah’s anecdotes effectively dispelled any ‘virus victim’ notions her audience may have had as she recounted her diagnosis experiences, how she dealt with the fear of disclosing to friends and how she has learned to live positively with hepatitis C. The simple statement of her expectation of a non-judgemental response from her audience at the Launch reminded us that this expectation is an important first step in dealing with the fear of discrimination from others. Continued on pages 10 & 11
Hepatitis C Community News
Issue 16
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IN THIS ISSUE Quiz
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Funding for Ifn+Ribavirin
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Hepatitis C Council SA Inc 4 The Parade Norwood 5067
5-6
News in Brief Funeral Practice
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Even in Death
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Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55 (GST inclusive)
Prison Issues
8-9
Awareness Week activities
10 - 11
You can request a zero-cost membership if you are experiencing financial difficulties.
Complementary Therapies
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Donations do not attract GST
Newsletter Survey results
13 - 15
Volunteering at the Council
16 - 17
Handy Hints
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Mail Bag
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Information / Support Group Guide for 2001
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Resource list & Additional Service Guide
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Postal Address Hep C Community News PO Box 782 Kent Town SA 5071 PH. (08) 8362 8443 Fax. (08) 8362 8559 Email: deborah@hepccouncilsa.asn.au Email: hepcsa@senet.com.au Web site: www.hepccouncilsa.asn.au
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.
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Hepatitis C Community News
Issue 16
The Hepatitis C Council of SA Inc. Adelaide Information Night Special Event
“Should I go on Treatment?” on
* MONDAY 4TH JUNE 2001 Adelaide Central Mission 10 Pitt St, Adelaide 6.30-8.30pm Dr Greg Dore and Leslie Wightman will guide two hepatitis C positive speakers (and us) through the process of assessing if combination therapy is the right choice. RSVP by May 28th on 8362 8443 BOOK EARLY for this very popular speaker * Please note change of date and venue
Spice & Dice Night A social getget-together for people with hep C and their family & friends on
Tuesday 26th June 2001 at
The Hepatitis C Council of SA
4 The Parade, Norwood
6-9pm
Quiz 1) Can you name 4 hospitals in SA through which interferon ribavirin combination therapy can be accessed? 2) Name the 3 main information/support services for people affected by hepatitis C in SA. 3) What is the ‘window period’ for antibodies to appear following infection with hepatitis C? 4) Do hepatitis C antibodies protect against reinfection? 5) How many people in Australia have been infected with hepatitis C from needle stick injuries from discarded syringes on beaches, parks etc? 6) What is the most popular herbal remedy used by people with hepatitis C that reputedly offers protection for the liver? 7) What agency in SA provides people who inject drugs with information on safer injecting from a peer?
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Funding Approval for Combination therapy It’s welcome news that on May 1 the eligibility criteria for interferon plus ribavirin combination therapy has been expanded to enable more people to access ‘gold standard’ treatment. The new criteria require people not to be previously treated with interferon and have stage 2, 3 or 4 fibrosis or stage 1 with A2 or A3 inflammation. (see criteria) This means those with compensated cirrhosis who had previously been excluded, will now be eligible for treatment under the new authority. However, it’s expected waiting lists will mean long delays. Decisions regarding treatment need to be well informed and carefully thought out. Therapy can be a gruelling experience for all involved. Not just the physical side effects of treatment need to be considered but the possible effects on work, family, relationships etc. If you would like more information on treatment for hepatitis C contact your GP, specialist or the Hepatitis C Council. Adelaide Information Evening – June 4th – “Should I Go on Treatment ?” Dr Greg Dore will be joined by Leslie Wightman to guide two of the Council’s positive speakers, and us, through the process of making an informed choice about combination therapy – applying what is known about medical science and the social & emotional issues related to hepatitis C to the real lives of two people. If you are considering treatment, this session may help you to tease out some of the issues worth considering. Please RSVP to the Council on 8362 8443 by Monday 28 May. Dr Greg Dore is a very popular speaker, so book early.
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S100 criteria People must not have previously been treated with interferon alfa-2a/2b and satisfy the following criteria. 1) Histological evidence of stage 2, 3 or 4 fibrosis or stage 1 with grade A2 or A3 inflammation, i.e. moderate to severe inflammation evident on liver biopsy (except in patients with coagulation disorders considered severe enough to prevent liver biopsy); 2) Abnormal serum ALT levels in conjunction with documented chronic hepatitis C infection (repeatedly anti-HCV positive and/or HCV RNA positive); 3) Female patients of child-bearing age are not pregnant, not breast feeding, and both patient and their partner are using effective forms of contraception (one for each partner). Male patients and their partners are using effective forms of contraception (one for each partner). Female partners of male patients are not pregnant. The treatment course is limited to 24 weeks, except for patients with genotype 1 and patients with hepatic cirrhosis or bridging fibrosis regardless of genotype, for whom the treatment course is limited to 48 weeks. Patients eligible for 48 weeks treatment may only continue therapy if plasma HCV RNA is not detectable by an HCV RNA qualitative assay after 24 weeks of therapy.
Caution Treatment of interferon Alfa has been associated with depression and suicide in some patients. Patients with a history of suicidal ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. Caution Ribavirin is a category X drug and must not be given to pregnant women. Pregnancy in female patients or in the partners of male patients must be avoided during treatment and in the 6 mth period after ending treatment.
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News in Brief Trial for Non-Responders A phase 3 hepatitis C clinical program that will compare Zadaxin® plus Pegasys® (pegylated interferon alfa-2a) to Pegasys mono therapy has been initiated in the US by SciClone Pharmaceuticals.
ZADAXIN, a synthetic peptide that enhances the immune response, has been administered to over 3,000 subjects in over 70 clinical trials covering a broad range of diseases, and an estimated 7,000 patients commercially, with virtually no serious drug related adverse events or toxicities. ZADAXIN is approved for sale in 20 countries, principally for the treatment of hepatitis B and hepatitis C and as a
vaccine adjuvant for patients with weakened immune systems.
The program will target people who are non-responders to interferon monotherapy or interferon plus ribavirin combination therapy.
Extract from SciClone Pharmaceuticals press release
The program consists of two 500-patient randomised double blind studies. Patients will be assigned to one of two treatment arms: 1.Zadaxin plus Peg-Intron or 2.Placebo plus Peg-Intron.
US Approve Pegylated Interferon
Both treatment arms will receive 12 months of therapy and be followed for 6 months after. The first part of the program led by Dr. Adrian DiBisceglie, M.D., Chief of Hepatology at the Saint Louis University and Medical Director of the American Liver Foundation, will focus on non-responders who do not have signs of cirrhosis. A second part, led by Kenneth Sherman, M.D., Associate Professor of Medicine and Director of Clinical Trials at the Liver Unit of the University of Cincinnati Medical Centre, will focus on non-responders who show early signs of cirrhosis. Meta-analyses of studies on re-treatment for 12 months of those non-responders with either alpha interferon alone or in combination with ribavirin has resulted in viral RNA clearance in less than 8 percent of these primary nonresponders. Conversely, in a pooled analysis of previous studies with non-responders to standard treatment, the combination of ZADAXIN plus standard alpha interferon demonstrated a 22 percent sustained virological response rate.
The US Food and Drug Administration (FDA) have approved Peg-Intron™ (pegylated interferon) monotherapy for treating chronic hepatitis C in people with compensated liver disease who have not previously been treated with alfa interferon. In a large randomised study involving 1,219 patients, once weekly dosing of Peg-Intron (at doses of 0.5, 1.0 or 1.5 mcg/kg) was compared to alfa interferon (3MIU) three times a week. Patients received 48 weeks of therapy and were followed up for 24 weeks. A sustained response was achieved in 24% of patients receiving the 1.0 mcg/kg dose of Peg-Intron compared to 12% in the alfa interferon arm. Adverse effects were experienced by almost all patients in the study. The most common side effect associated with Peg-Intron, occurring in about half of patients were ‘flu-like’ symptoms, 29% experienced depression. Although Sustained response rates for Peg-Intron are not as high as interferon/ribavirin combination therapy, they do offer an alternative for people who are unable to take ribavirin.
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Interneuron licenses Phase 3 Compound for the Treatment and Prevention of Liver Disease Interneuron Pharmaceuticals, Inc. announced that it has exercised its option and entered into an agreement to license IP 501, an orally-administered anti-fibrotic purified phospholipid compound in Phase 3 development for the treatment and prevention of liver diseases, including alcohol and Hepatitis C-induced cirrhosis. The license agreement gives Interneuron rights to develop and commercialise the drug in several major markets, including the United States and Japan. In addition, the Company announced the initiation of a government-funded Phase 3 clinical trial evaluating IP 501 in Hepatitis C. IP 501 is the subject of a recently completed Phase 3 clinical trial funded by the government to evaluate the compound in alcoholic cirrhosis. The primary endpoint of the study is reduction in the progression of cirrhosis among drug-treated pre-cirrhotic patients compared with placebo patients, as measured by serial liver biopsies. The Company expects to receive a preliminary analysis of the data in the first quarter of this year. In addition to this trial, IP 501 is also being studied in another government-funded, multicentre, Phase 3 clinical trial. This recently initiated, multi-year trial is designed to evaluate the safety and effectiveness of IP 501 in treating patients with Hepatitis C-associated cirrhosis. Under the terms of the license agreement, the Company has acquired rights to develop and commercialise IP 501 in the United States, Canada, Japan, Korea, and, under certain circumstances, Europe and other markets. Interneuron is responsible for all remaining clinical and regulatory development, manufacturing, and marketing of the compound. Except for the descriptions of historical facts contained herein, this press release contains forward-looking statements that involve risks and uncertainties that could cause the Company's actual results and financial condition to differ materially from those anticipated by the forward looking statements. •
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Abridged Press release from Interneuron Pharmaceuticals Web site http://www.interneuron.com
Funeral Practice Mathew’s story was originally published in The Hep C Review-Sept 98, and reprinted in The Hep C Review-March 2001. I am writing about when I lost my brother in October 1997. He died so suddenly that our family didn’t identify him but we planned to have a viewing with him at the funeral. With one day’s notice from the funeral, the funeral directors made a phone call to my family stating in that call, “We have some good news and some bad news”. “The good news is we have your son’s body back on the central coast so the funeral is right to go ahead tomorrow as planned.” “But the bad news is that your son had hepatitis C and it is a highly contagious disease. Because you’re not allowed to view a person with hepatitis C there can’t be a viewing.” It wasn’t until months later when I found out that we as a family had every right to view my brother. I’d written to the Minister for Health, Andrew Refshauge, and he sent a letter back explaining our rights - but it’s too late, my brother is buried. My mother and I have suffered extra grief because of the actions of the funeral directors. I have attempted a legal case against them as they were negligent in their handling of this whole affair. The reason why I’m writing this letter to readers of The Hep C Review is because all my mother wanted to do was see her son of 28 years for the last time in her life. This right was taken away. I would hate to think this is going to happen to someone else’s family. The thought that this may have been occurring for some time is also hard to swallow. I believe that until a funeral company is taken to court and punished for their behaviour, this type of ignorant and disgusting action will continue within the funeral industry. It is in this regard that I decided to take legal action against the funeral company. Mathew, NSW. •
Taken with thanks from The Hep C Review, Edition 32
Hepatitis C Community News
Issue 16
Even In Death It appears that people with hepatitis C are being discriminated against even when they are dead!! Workers at the Hepatitis C Council have received feedback from several sources about a number of discriminatory incidents that have taken place at funerals. In the instances reported, funeral directors have presumed that the recently deceased individual is hepatitis C positive, particularly in cases where the cause of death has been by overdose. Some funeral directors are instructing family members and friends to avoid touching and kissing the deceased person. The reason given is to protect others from catching hepatitis C. In a state of grief and distress, and with limited knowledge of hepatitis C transmission, funeral guests have complied with funeral directors' directions. By doing so these family members and friends have missed a significant opportunity to farewell their loved one in a full and meaningful way. This heightened level of distress is compounded by newfound anxieties relating to risk of transmission via previous contact with the deceased. Hepatitis C is a blood borne virus that is transmitted by infected blood gaining direct access into the bloodstream of another. Kissing and hugging poses no risk for transmission given that: a) blood is rarely present in these circumstances; and b) entry into the bloodstream is difficult and unlikely. When these individuals discover at some later point the facts about hepatitis C transmission, they are left with feelings of renewed grief and anger.
Is this Discrimination? The behaviour being demonstrated by some funeral directors could well be discriminatory, and relatives and friends may be able to lodge a complaint under the federal Disability Discrimination Act (DDA). The complaint would be lodged under the part of the Act that makes it illegal to discriminate against somebody because of his or her relationship with a person with a disability. Within the Act, relatives and friends are called “associates�. What this means, is that even if you don’t have a disability it is still possible to lodge a complaint about disability discrimination if you are treated differently to someone else in the same situation, because you are an associate of someone who has hepatitis C. If you would like to talk to someone about making a complaint under the DDA you can ring David Arblaster at the Disability Complaints Service on 8234 5699.
What the Hepatitis C Council of SA is doing About This? Our Metro Hepatitis C Educator Vanessa Behne has contacted the Funeral Association of SA to voice our concerns and to provide training about Hepatitis C to it's members in May. We would also like to hear from you if you have had a similar experience so that we can continue to document how widespread this practise is and to advocate for change. Leslie Wightman & David Arblaster
Next Edition Your rights & issues to consider before disclosure Hepatitis C Community News
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Can hepatitis C transmission be reduced in Australian prisons? Strategies to reduce the number of people who inject drugs and minimise harm should help, but the cooperation of correctional authorities is essential. MJA 2001; 174:378-379
Approximately 20,000 people were incarcerated in Australia at the end of 1999.1 Another 20,000 had cycled through our prison systems in that year, but had been released by December 1999. This dynamic movement of people in and out of prisons not only increases the possibilities for transmission of infections such as hepatitis C virus (HCV) and HIV, but also makes it very difficult to detect transmission. Hepatitis C infection is endemic among Australian prisoners. In New South Wales prisons, approximately a third of male and two-thirds of female inmates are infected. Corrections Health Service had the second-highest number of hepatitis C notifications for an Area Health region in NSW in its debut report.2 HCV incidence is likely to be high in prison, but to date there have been few cases reported.3 Nevertheless, several studies have found that a history of imprisonment is associated with HCV infection.4 These findings, from both Australia3 and overseas,4 raise two questions: •
What is the incidence of HCV for various transmission modes in prison?;
and •
Can HCV transmission be reduced in prison?
Despite gaps in our knowledge, there is sufficient evidence to address the two most frequent modes of transmission: injecting drug use and tattooing. About a quarter of prisoners inject drugs while incarcerated.3 Virtually all drug injecting occurs with used injecting equipment shared among numerous partners. Therefore, the primary goal has to be to reduce drug injecting in prison.
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One way to achieve this is to reduce the number of drug injectors in prison.5 There is abundant evidence that community-based methadone treatment reduces injecting, crime and the subsequent incarceration of drug users,6 yet only a third of the demand for methadone treatment is met in the community.6 Another way to reduce the level of drug injecting in prison is to provide methadone maintenance treatment for prisoners. In one study, prisoners maintained on methadone injected half as often as those out of treatment, but only when doses reached 60mg and treatment was provided for the entire term of the prison sentence.7 The NSW prison methadone program started in 1987, but meets only a quarter of the potential demand for treatment.5 Prison methadone programs have been recently introduced or expanded in Queensland, South Australia, Victoria, Tasmania and the Australian Capital Territory. Drug injecting in prison is also likely to be reduced if prisoners receive lesser punishment for the use of non-injectable drugs compared with injectable drugs. Yet prisoners receive the same penalty whether they test positive on urinalysis for cannabis or for heroin. Research into mandatory drug screening in United Kingdom prisons found that inmates moved from smoking cannabis (detectable in urine for weeks) to injecting heroin (detectable in urine for only a day or two) after mandatory drug testing was introduced.8 South Australia and Tasmania have introduced differential penalties for different drugs, with the aim of reducing drug injecting in prison. Victoria is considering a similar system.
Hepatitis C Community News
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Another way to reduce drug injecting is to facilitate non-injecting routes of administration among injecting drug users. Preliminary results from a cognitive behavioural trial indicated that some injecting drug users will shift to non-injecting methods of use (A Wodak, Director, Alcohol and Drug Service, St Vincent’s Hospital, Sydney, personal communication). Prisons, where injecting is so risky and common, are ideal settings for a trial of this intervention. Without doubt, the most controversial strategy is prison needle and syringe exchange programs. These programs have been successfully implemented in Switzerland, Germany and Spain in 17 different prisons.9 However, they reduce sharing of injecting equipment rather than drug injecting it self, and the problems of fatal overdose, abscesses, and inmates’ involvement in the prison drug trade may persist. If prison needle and syringe exchange programs are unacceptable, then much more effort must be directed towards meeting the demand for drug treatment by prisoners. HCV transmission in prison may also occur through tattooing. One way to reduce tattoorelated hepatitis C transmission is to train select inmates in infection control procedures and to provide them with auto claves and single-use ampoules of ink. Penalties for tattooing in prison should be removed. Allowing professional tattooists to visit prison is likely to be too expensive for inmates. So how can these strategies be implemented? The first step would have to be increasing the number of general practitioners who prescribe methadone both the community and in prison. Less than 1% of GPs prescribe methadone in NSW.10 The opportunities for improvement here are enormous. Almost all other strategies listed above require the cooperation of prison authorities. Yet, correctional services administrators (comprising prison commissioners from each jurisdiction) have signalled their resistance to examining hepatitis C infection in prison by declining to even discuss recommendations made in the Review of the Third National HIV/AIDS Strategy.11 Until prison authorities are made to recognise that prisons play a significant role in the hepatitis C epidemic, it is unlikely that hepatitis C transmission will be reduced in Australian prisons.
Kate A Dolan Senior Lecturer National Drug and alcohol Research Centre University of New South Wales, Sydney, NSW
1. Corrective Services, Australia. Canberra: Australian Bureau of statistics, December 1999. (Catalogue no. 4512.0) 2. NSW Department of Health. Healthy people 2005: new directions for public health in NSW. NSW Public Health Bull 2000; 11: 198. 3. Dolan K. The epidemiology of hepatitis C infection in Prison Populations [discussion paper]. Canberra: Commonwealth Department of Health and Aged Care, 2000. 4. MacDonald M, Crofts N, Kaldor J. Transmission of hepatitis C virus: rates, routes and cofactors. Epidemiol Rev 1996; 18: 137-148. 5. Dolan K. Surveillance and prevention of hepatitis C infection in Australian prisons. A discussion paper. Technical Report No.95. Sydney: National Drug and Alcohol Research Centre, 2000. 6. Ward J, Mattick R, Hall W. Methadone maintenance treatment and other opioid replacement therapies. Amsterdam: Harwood Academic press, 1998. 7. Dolan KA, Hall W, Wadok A. Methadone maintenance reduces injecting in prisons. BMJ 1996; 312: 1162. 8. Gore SM, Bird AG. Mandatory drug tests in prisons. BMJ 1995; 310: 595. 9. Rutter S, Dolan K, Wodak A, Heilpern H. Prison syringe exchange; a review of international research and program development. Technical Report No. 112. Sydney: National Drug and Alcohol Research Centre, 2001. 10. NSW Health Department. The NSW drug treatment services plan, 2000-2005: better health good health care. Sydney: NSW Health Department, 2000. 11. Proving partnership. Review of the National HIV/AIDS Strategy 1996-97 to 1998-99. Canberra: Australian National Council on AIDS and Related Diseases, 1999. ©MJA 2001
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Continued from cover story Helen Vidot, dietician from Royal Prince Alfred Hospital Sydney, also launched “Nutrition and Hep C” a resource for healthcare workers. The Launch was followed by Look Sharp – an information forum for workers in the Clean Needle Program. Dr Greg Dore presented results from the NSP 2000 Survey and Joy Copeland, Senior Project Officer from Surveillance STD Services gave a SA surveillance report. The tripling of notifications nationally of hepatitis C in young people (13-19 years) over the last 5 years is a stark reminder that this epidemic is far from being contained and represents perhaps the greatest challenge for everyone working in hepatitis C prevention education.
Alan Yale & Stephen Lymb from DASC The evening event for Day 1 of Awareness Week was the Hep C Challenge – which proved to be a popular event with over 90 people attending. Participants came together from a range of work and life experiences of hepatitis C – members of the affected community, general practitioners, drug and alcohol workers, nurses, academics, community workers and bureaucrats. Teams were formed to represent this diversity of experience, and the quiz format interspersed with guest speaker presentations from the medical, drug and alcohol and community sectors in the relaxed, if a little crowded atmosphere of the Lion Hotel was for most participants, an enjoyable way to learn more facts about hep C and an opportunity
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to “rub shoulders” with others working with the challenges of hepatitis C they would not usually team up with. The event was lively, noisy and at times a tad unruly in getting the task done and I would particularly like to acknowledge the skills and talents of the guest speakers for the event – Dr Greg Dore, Jeff Ward, Dr Rob Ali, Leanne Totten, Dr William Donohue and Tania Mancer and the MC for the evening Dr Rob Hall and quiz mistress Vanessa Behne for keeping us ‘on track’. Despite the ‘mayhem’, for those of us who noticed, this event demonstrated the benefits of a ‘partnership’ / team approach in taking on the Hep C Challenge. Day 2 Workers and groups associated with The Parks Community Health Centre initiated a hep C awareness event for the Nunga community in this area. Over 60 workers and members of the indigenous community in the area supported the event. Presentations on hep A, B & C and IDU issues were given, and positive speakers from the Council and members of the grannies group shared their personal and family stories with the wider audience. The event was well received by the community and offered an opportunity to talk more openly about sensitive issues amongst its members. On Tuesday evening, Dr David Shaw, infectious diseases specialist at the Royal Adelaide presented Doubling Up – HIV / Hepatitis C Co-infection at the Positive Living Centre. Much is still to be investigated about how these two viruses interact in the body, what is appropriate treatment for people with a dual diagnosis and the emotional and psychological impact of living with this virus cocktail – and from one person’s story we could gain a little insight into the human experience of dealing with these issues. Day 3 Staff and volunteers from the Council held a hepatitis C information stall at Arndale Shopping Centre during the day and in the evening two information sessions were held. The ABC of Hepatitis presented by Dr Le Cong, Enaam Oudih and Vanessa Behne for the Vietnamese Community and Current Treatments for People with Hepatitis C presented by Dr John Ring, hepatologist from the viral hepatitis clinic at Flinders Medical Centre and someone who has just completed combination therapy.
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Day 5 Nunkuwarrin Yunti organised a very informal hep C education gathering in Victoria Square for members of the indigenous community during the morning and in the evening a Rave Safe Dance Party was held at St Paul’s.
Dr John Ring, Hepatologist from Flinders Medical Centre. Day 4 A health and lifestyle Expo was held at the Adelaide Congress Centre for people affected by a range of liver conditions including hepatitis C. Guest speakers presented on a wide range of topics including diet and nutrition, complementary therapies, liver biopsy, current treatments and developing strategies for coping with the emotional impact of HCV infection. There were a variety of stallholders dispensing health information and product samples including massages, non-alcoholic wines, tasty and healthy multicultural foods, teas, essential oils and alternative remedies. The event was supported by a half a dozen different cultural communities and during some presentations the buzz of interpreters in the room echoing the speaker in a variety of unfamiliar sounds gave the event a unique atmosphere. While organisers of the Expo had expectations of attracting 200 people (and there was a little disappointment that we did not get these numbers), about 60 people did feel ready to attend a public event on hepatitis C in a rather ‘small place’ like Adelaide where there is only 2 degrees of separation - and these people on the whole, felt they benefited from the wide range of information and sampling available to them on the day.
Day 6 A hepatitis C information stall was held at the rural Show at Tanunda and due largely perhaps to the positioning of the site of the stall and the left over Expo Sample Bags, the stall got a good deal of exposure and many enquiries. Thanks to William and Nadia for this effort at the end of a very busy week. The Council would also like to acknowledge the support from all the community health services, particularly those in rural areas who supported the Awareness Week with displays of the Poster and other information distributed by the Council. Behind the scenes, the organisation of this Awareness Week provided a great challenge for a small community organisation such as the Council - from conceptualising the theme of the week, creating posters and postcards, having seemingly endless planning meetings with our hard working, creative partners, negotiating venues and catering (not to mention car parking), the rounds of telephone calls, letters, faxes and emails associated with inviting guest speakers and sponsorship, meeting deadlines for printing and distribution of the program – it all seemed to take on a life of its own and then all too quickly Day 1 had arrived and it was on with the Show, ready or not ? This work for Awareness Week was done in addition to the Council’s normal workload and we began with only the additional resources of $6,000 from the Department of Human Services. For the organisers, the Awareness Week was an exciting and exhausting experience in building community and what we lacked in resources and experience we filled with energy and a willingness to ‘have a go’ (it’s the Australian way) and learn from the process, in order that hepatitis C will not always remain ‘the invisible epidemic’ for most South Australians. Kerry Paterson
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Complementary Therapies St Mary’s Thistle or Milk Thistle The following is an article from the National Centre for Complementary and Alternative Medicine taken from the National Library of Medicine (PubMed). Milk Thistle in the treatment of Hepatic Diseases Silybum marianum (milk thistle) is currently the most well researched plant in the treatment of liver disease. Silymarin, which is found in the entire plant but is concentrated in the fruit and seeds, is an extract of milk thistle which contains the flavinoids silibinin, silydianan, and silichristin. Silybinin constitutes 60-90% of silymarin and is the component with the greatest degree of biological activity. Milk thistle extracts are usually standardised to contain 70-80% silybinin. Milk thistle is not water soluble and is typically administered as an encapsulated standardised extract. The use of silymarin in chronic liver disease was recently reviewed in the NIDDK/NCCAM symposium, Complementary and Alternative Medicine in Chronic Liver Disease (Seeff 1999 draft). The hepatoprotective properties of silybinin against a variety of hepatotoxins are established by experimental data. The mechanisms which provide silymarin’s hepaprotective effects are many and varied, and include antioxidation, anti-lipid peroxidation, enhanced detoxification, and protection against glutathione depletion. In contrast, the clinical benefits of silymarin therapy are difficult to establish. Conflicting data has emerged from randomised controlled studies in the treatment of chronic liver disease with differing results. No randomised trials have yet been performed in patients with chronic hepatitis C, although small pilot studies have shown a lowering of serum enzymes without accompanying loss of HCV RNA levels. It seems apparent that silymarin has a clearly positive effect on the liver with little to no accompanying side effects, and is therefore deserving of more rigorous clinical trials. The first challenge will be to identify a pure and standardised product and then to consider which form of liver disease is likely to benefit from rigorously developed and conducted treatment trials. (NIH Symposium 1999). Whilst researching this topic, I found that there are trials being held in France and Germany to be concluded early next year that should show the effects of Silymarin on Hep C and cirrhosis. Meanwhile if you are considering the use of St. Mary’s Thistle, it seems that some brands have a higher concentration of silybinin. Hilde Hermes’ brand has quite a high one. Fred
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2001 Newsletter Survey Results Thank you to everyone who took the time to complete and return a survey. Your input will help us plan and improve the newsletter over the next twelve months. The Hep C Community News will now conduct annual surveys.
Duration of readership
We received a total of 26 responses. Number of others reading your copy Who you are
Who other readers are
Gender
Discussing articles Age groups
Aboriginal or Torres Strait islanders Where you live
No respondents were Aboriginal or Torres Strait Islanders.
Languages spoken at home English was the language spoken at home by all but one respondent; who spoke Italian and English.
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Comments • • •
• • •
Where else you get information on hepatitis C
A very informative and useful newsletter. Seems to be more female stories, letters, opinions etc than men. After 10 yrs of abstinence - sick of seeing it in all media/all the time. How many subscribers are currently using anyway? I love the personal stories and help on how you can cope. Excellent keep it up. I particularly like to read personal stories from people who contracted hepatitis C in other ways-not necessarily through IDU.
GP Specialist
*
Other Health Prof
Other sources included:
•Council pamphlets •Other people with hep C •Patients •Professional development •Hep C Councils in other states
Alternative Prac Iternet Helpline Other Newsletters Books Journals
* Other Info Srcs 0
2
4
6
8
10
Interest level in regular articles—Space allocated Council Updates
State/National Strategies
HCV Information
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From Doug’s Desk
Personal Stories
News in Brief
Mail bag
Complementary Therapies
Hepatitis C Community News
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Support Group Dates
Interest in other articles
Easy to read/understand
Dear doctor Recipies Mens issues Womens issues IDUs
Number of pages
Treatment in SA Interviews Book reviews Handy hints 0
Quarterly publication
5
10
15
20
25
Suggestions for other regular articles: • • • •
Personal experiences of single events eg liver biopsy, telling a potential partner, problems in the medical system. Alternative treatments. Hep C related problems eg depression, care of kids affected by HCV directly, or indirectly. More surveys and the results published.
Issues or topics you would like in future newsletters •
News from other states, info re: national directions
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Detailed results and stats of any trials, and trials elsewhere.
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More complementary therapies, lifestyle issues, food, exercise, relaxation changing and managing change.
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How can we set up a local area support network/group?
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As an ex IV user, now given up alcohol, as is common I use cannabis. What are the implications for the liver.
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Healthy eating and personal stories.
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Management of people with normal ALTs, what complications may occur later in life with the treatment of other diseases of old age.
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Status of hep C in other countries esp. Canada, UK, USA and Sweden.
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Which Hospital offers what?
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Essential hep C information/implications could usefully be related in different formats. 1) as reminder 2) for newcomers.
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Policies + strategies-what’s going on re: hep C in govt in SA.
•
Hep C astrology (fun), singles meet singles.
Hepatitis C Community News
Duration of diagnosis
Council member
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Who Wants to Be a Volunteer? Fred Does ! In this, the ‘International Year of the Volunteer’ the Council would like to sing the praises of our volunteers who make an enormous contribution to our team. In this issue we are pleased to feature one of our longest serving volunteers, this is Fred’s story.
How did you first hear about the Hepatitis C Council? I was first diagnosed at Clinic 275, who then advised me to see my G.P. for further advice. Fortunately, my doctor was reasonably conversant around hepatitis C and was able to allay many of the concerns that I had at the time. He also told me about an organization called the Hepatitis C Council and that they hold support groups for those affected and their families. Admittedly, my first feeling about a support group was that it wasn’t for me and that there would probably be a lot of very sick people attending, and that was something that I didn’t want to see at the time. It was not until about three years later when I had a new partner, that I realised that I could not answer all of her questions around sexual transmission that I first contacted the Hepatitis C Council. Together with my partner, we met with a man there who was very helpful and really took some time to allay our fears around transmission routes.
Why did you decide to become a volunteer at the Council? At that first meeting with Colin, he loaned me all of their copies of the NSW Hep C Review. I found that I read all of them with much interest and couldn’t wait to find out all that I could around the virus. The Hep C Council to me, was like a library devoted to the subject and once I found out that they welcomed volunteers, I knew that it was something that I wanted to do.
Tell us about your experiences as a volunteer. Well, right from day one I found that there was a really caring and supportive atmosphere to the place and getting to know the other volunteers, some who also were Hep C positive, was very enlightening for me. I found that I could talk very openly about the virus and my past, which I could not really do before with others that do not have the virus. It was a bit like discovering a long lost family that you did not know you had.
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Not long after joining as a volunteer I was asked if I would like to be a member of the Management Committee, as they wanted more members that were Hep C positive. I found that I enjoyed sitting in on those meetings and not long afterwards I was asked to take the minutes, which I still enjoy doing almost three years later. The Council has always encouraged the volunteers to gain new skills, I have certainly learned some new ones and have done numerous courses. One that was a bit challenging for me was the positive speaking (that is speaking to a group of people - health workers etc.). I still do the occasional speaking engagement and it is just starting to be a little less nerve racking, but it is very rewarding – especially knowing that you might be making a difference to people’s attitudes by giving them a personal story that helps put a face to the virus. Answering the telephones and talking to the Hep C affected community is also very rewarding, when you know that certain information allays fears, and helps empower people to manage their virus more successfully. In October ‘99, I was offered the chance to go to Christchurch, New Zealand for the 2nd Australasian Hep C Conference, which was just brilliant. Whilst there I met Mathew Dolan the author of the Hepatitis C Handbook and numerous other knowledgeable people, including a Naturopath who was quite enlightening on a few Hep C issues. The Council does encourage volunteers to undertake any training that builds new skills. Overall, my involvement at the Council has been such a positive thing for me that I am so glad that I made that first move to volunteer. The people that I have met here I have grown to love dearly and as I am thinking about doing the combination therapy soon, I am so glad that I will have a support network there that will help to see me through it.
Quiz Answers 1)
Flinders Medical Centre Queen Elizabeth Hospital Royal Adelaide Hospital Lyell McEwen Hospital
2)
Hepatitis C Council Adelaide Counselling Team Hepatitis Helpline
3)
From 54 to 192 days (8 to 28 weeks) (2 to 6 months)
4)
NO. Antibodies give no protection at all against reinfection.
5)
None.
6)
Milk thistle (St Mary’s Thistle, Silybum marianum, Silymarin)
7)
SAVIVE – South Australian Voice for IV Education (see other services page 20)
Handy Hints Dry Skin If you’re having problems with dry or flaky skin, try washing with sorbolene cream instead of your usual soap. Thanks go to Peter for our first hint.
Before Treatment Make sure you stock your pantry before starting treatment. You might not feel much like shopping for a while.
So to all at the Council, a big thank you.
Jean
Fred
If you have any handy hints please share them with us.
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Mail Bag
Do you have a story you would like to share?
Hi folks, I wrote a letter to this mag a couple of years ago about how I became sick post-pregnancy and my husband left me 2 days before being diagnosed Hep C positive in 91. I cut down my working hours until I finally had virtually no choice but to try interferon-then landed in the loony bin with psychosis. Finally, when I couldn’t cope with the physical and mental stresses, my son went to live with his Dad - to give me a break. My physical health improved after interferon, but the mental “cloud” from it took a very long time to decrease. In 1999 I had a bleed, but because of my previous mental problems, my GP misdiagnosed me as psychotic and my liver specialist agreed, so I sacked them both in disgust. Lucky I knew how to treat myself for shock or I might have died. I went to a different GP (who didn’t know my whole health profile) and she treated me correctly. The whole way through this nightmare the folks at the Hep C Council were understanding, supportive and non-judgemental - thank you guys - I couldn’t have managed without you!
We are always looking for personal stories and peoples experiences to publish in our newsletter. We would particularly like to hear from people on, or who have completed treatment.
HEPATITIS C FIND OUT THE FACTS ARE YOU NEWLY DIAGNOSED WITH HEPATITIS C AND WANT TO TAKE A CLOSER LOOK AT WHAT THAT MEANS FOR YOU? COME ALONG AND HEAR CLEAR AND UP-TO-DATE INFORMATION ABOUT HEPATITIS C FROM WHAT IT IS, CURRENT TREATMENTS, LIFESTYLE ISSUES, DISCLOSURE AND MANAGEMENT OF SYMPTOMS.
Thursday 24th May
Of course, in the past few years the profile of HCV and its treatment have improved and I have eagerly followed others’ progress, with some good results. There is even a song about us Heppers, (Yellow Fellow) by a band called Coldplay. The song is called “Yellow”.
1.30-3.30pm To be held at:
My son came back to me in 2001 because his Dad, who is also a Hepper, couldn’t cope. I can’t go back to work but value every day I get vertical without feeling ill and I’m becoming more and more determined to fight for my life.
The Hepatitis C Council of SA 4 The Parade, Norwood
Good luck to all of you in similar situations support the H. Council-they are there to help us.
Ph: 8362 8443
Dotti.
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Adelaide Information Evenings (Formerly Adelaide Support Group) The Adelaide information Evenings are for people who are affected by hepatitis C. Guest speakers are invited to speak on topics such as biopsy, treatment strategies and diet. Partners, friends and interested professionals are welcome to attend. A guest speaker will speak on a given topic followed by question time. Stay on for a chat and light refreshments. All Council financial members receive monthly updates on information evening topics. If you are not a financial member and would like more information on evening topics, please contact the Council.
1st Wednesday of each month 6.30pm - 8.30pm 4th
Sept
5th
July
4th
Oct
3rd
Aug
1st
Nov
7th
June
Please note the June information evening will be held on Monday June 4th at the Adelaide Central Mission, see add page 3. •
Women’s Coffee and Information Morning This morning is specifically for women with and affected by hepatitis C. These Coffee and Info Mornings will be quite informal and provide women with the opportunity to hear from guest speakers, ask questions and have plenty of time to chat. If you would like more information on coffee mornings, guest speaker topics or women and hepatitis C, please contact the Council.
2nd Monday of each month 10.30am - 12.30pm June
18th
Sept
10th
July
9th
Oct
8th
Aug
13th
Nov
12th
Support Group for People with Symptoms Due to changes in community needs the Support Group for People with Symptoms has been discontinued. This group was attended mainly by men and the Council is in the process of identifying ways to meet the needs of men living with hepatitis C.
Information and Support Groups are held at the Hepatitis C Council 4 The Parade, Norwood Hepatitis C Community News
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Resource list
Other Services
Hepatitis C Information packs contain a Contact booklet, pamphlets and membership form in a small sized envelope.
The Adelaide Counselling Team Inc provides a free independent counselling and advocacy service specialising in Hepatitis C and associated issues. Ph: (08) 8363 2000
Information Sheets Liver Biopsy Combination Therapy Genotypes Fatigue Facts Hepatitis C in Australia - A Snapshot Cirrhosis Pegylated Interferon
Pamphlets C Positive - What does it mean? What is Hep C - Indigenous What is Hep C - Low literacy ABC Positive Discrimination Hep C - Women, Pregnancy and Babies C Talk - Positive Speakers’ Program Support Group Guide Hepatitis C Council of SA Inc - Council services Hep C - Dental Care Adelaide Counselling Team Healthy Body Art Hepatitis C & Injecting Drug Use
Booklets Preparing for Testing Contact: Post Test Information for Hep C Women and Hepatitis C
Support Group Transcripts Testing & Hepatitis C - Dr Robina Creaser Women and Hepatitis C - Dr Jo Thomas Acupuncture and Hepatitis C - Lynn Lobo
Other Publications Diet and Hepatitis C - A Common Sense Guide to Healthy eating At Home with Hepatitis C Lesbians and Hepatitis C Info for Family and Friends Australian Hepatitis C Chronicle - Quarterly publication of the Australian Hepatitis Council Hep C Review - Quarterly publication of the NSW Hepatitis C Council
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Hepatitis Helpline provides information, counselling, referral and support over the phone. Ph: 1800 621 780 9am—9pm SAVIVE-South Australian Voice for IV Education provides peer-based support, information and user education. SAVIVE is a Clean Needle Program outlet. Ph: (08) 8362 9299 Clinic 275 provides free and confidential advice, testing and treatment for all STDs, including HIV/AIDS. Ph: (08) 8226 6025 Toll free country call: 1800 806 490 The Second Story-Child and Youth Health provides a free confidential youth health service for young people aged 12 to 25 years in the metropolitan area. City (08) 8232 0233 Elizabeth (08) 8255 3477 Christies Beach (08) 8326 6053 ADIS-Alcohol and Drug Information Service provides counselling, information, referrals and a current location list of your nearest Clean Needle Program outlet. Ph: 1300 131340 (24 hrs Toll Free) Nunkuwarrin Yunti Ph: (08) 82235011 Multicultural Communicable Diseases Program 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. Ph: 8223 3433
Hepatitis C Community News
Issue 16