HEP C COMMUNITY NEWS Summer 01 - 02
Issue 19
Hepatitis C Community News
Issue 19
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IN THIS ISSUE News in Brief
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Advances in Hepatitis
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Vietnamese Street Work & Mobile Clean Needle Project
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Hepatitis C Council SA Inc 4 The Parade Norwood 5067
Women & Hep C Survey
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Illness is normal
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Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55
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(GST inclusive)
Life after treatment stories What’s in a name?
14 - 15 You can request a zero-cost membership
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3 Australasian Conference
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Volunteering at the Council
16 - 17
Donations do not attract GST
Mail Bag
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Book review
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Hepatitis Trial
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Information / Support Group Guide for 2002
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Resource & Additional Service Guide
Postal Address 20
Hep C Community News PO Box 782 Kent Town SA 5071 PH. (08) 8362 8443 Fax. (08) 8362 8559 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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Hep C Info & Support Line 8362 8443 Sabine
Cathi
(Regional Callers)
Sabine and Cathi would like to hear from you if you have any questions, confidentiality assured.
Current Staff Vacancies at the Council The Hepatitis C Council of SA is currently advertising for three staff positions. We encourage people affected by hepatitis C to apply for the following:
Rural Educator 1 FTE Metropolitan Educator 1 FTE These positions are responsible for the planning and delivery of education sessions on hepatitis C and related issues to a variety of people throughout SA. The positions are also responsible for developing links between key health and community workers, people affected by hepatitis C and the Council. Volunteer Coordinator 0.6 FTE This position is responsible for the coordination, support and development of the Council’s volunteer program.
All positions are under the SACS Award Level 4. Applications must address the selection criteria which can be obtained by phoning the Council on 8362 8443. Applications close Friday 1st January 2002.
1800 02 11 33
Farewell to William William Donohue finished up as Rural Educator with the Council in early December to take up a position at the Hepatitis C Education, Prevention and Care Program. All of us at the Council would like to thank William for the contribution he has made to hepatitis C education in rural and remote areas of South Australia over the past 18 months. William has had particular interests in promoting hepatitis C education in prisons and has worked closely with the Aboriginal Drug and Alcohol Council to raise hepatitis C issues within our indigenous communities. His background knowledge as a GP has been highly valuable to the many people who have accessed education sessions as part of a group or at an individual level (not to mention his co-workers at the Council). We would like to wish him and this new project every success.
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News in Brief THE NEW ENGLAND JOURNAL OF MEDICINE EARLY RELEASE (Notice: Because of its potential clinical implications, this article is being published early [on October 1, 2001 http://content.nejm.org/cgi/content/ abstract/NEJMoa011232v1]. It will appear in the November 15 issue of the Journal.)
Treatment of Acute Hepatitis C with Interferon Alfa-2b Elmar Jaeckel, M.D., Markus Cornberg, M.D., Heiner Wedemeyer, M.D., Teresa Santantonio, M.D., Julika Mayer, M.D., Myrga Zankel, D.V. M., Giuseppe Pastore, M.D., Manfred Dietrich, M.D., Christian Trautwein, M.D., Michael P. Manns, M.D., and the German Acute Hepatitis C Therapy Group ABSTRACT Background In people who are infected with the hepatitis C virus (HCV) chronic infection often develops and is difficult to eradicate. We sought to determine whether treatment during the acute phase could prevent the development of chronic infection. Methods Between 1998 and 2001, we identified 44 patients throughout Germany who had acute hepatitis C. Patients received 5 million U of interferon alfa-2b subcutaneously daily for 4 wks and then three times per week for another 20 weeks. Serum HCV RNA levels were measured before and during therapy and 24 weeks after the end of therapy. Results The mean age of the 44 patients was 36 years; 25 were women. Nine became infected with HCV through intravenous drug use, 14 through a needle-stick injury, 7 through medical procedures, and 10 through sexual contact; the mode of infection could not be determined in 4. The average time from infection to the first signs or symptoms of hepatitis was 54 days, and the average time from infection until the start of therapy was 89 days. At the end of both therapy and follow-up, 42 of the 43 patients who have completed follow-up (98 percent) had undetectable levels of HCV RNA in serum and normal serum alanine aminotransferase levels. Levels of HCV RNA became undetectable after an average
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of 3.2 wks of treatment. Therapy was well tolerated in all but one patient, who stopped therapy after 12 weeks because of side effects. Conclusions Treatment of acute hepatitis C with interferon alfa-2b prevents chronic infection. • taken with thanks from the HEPV-L info list
Transplantation of hepatitis C-positive livers in hepatitis C-positive patients is equivalent to transplanting hepatitis Cnegative livers Marroquin C. E., Marino G., Kuo P. C., Plotkin J. S., Rustgi V. K., Lu A. D., Edwards E., Taranto S., Johnson L. B. Liver Transpl (2001) 7(9): 762-8 A significant number of patients with end-stage liver disease secondary to hepatitis C die of disease related complications. Liver transplantation offers the only effective alternative. Unfortunately, organ demand exceeds supply. Consequently, some transplant centres have used hepatitis C virus positive (HCV+) donor livers for HCV+ recipients. This study reviews the clinical outcome of a large series of HCV+ recipients of HCV+ liver allografts and compares their course with that of HCV+ recipients of HCV-negative (HCV(-) allografts. The United Network for Organ Sharing Scientific Registry was reviewed for the period from April 1, 1994, to June 30, 1997. All HCV+ transplant recipients were analysed. Two groups were identified; a group of HCV+ recipients of HCV+ donor livers (n = 96), and a group of HCV+ recipients of HCV(-) donor livers (n = 2827). A multivariate logistic regression model was used to determine the odds of graft failure and patient mortality, and unadjusted graft and patient survival were determined using the Kaplan-Meier method. There were no differences in demographic criteria between the groups. A greater percentage of patients with hepatocellular carcinoma received an HCV+ allograft (8.3% v 3.1%; P = 0.01). Patient survival showed a significant difference for the HCV+ group compared with the HCV(-) group (90% v 77%; P=0.01). Blood type group A, group B, group O incompatibility was significant,
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with 4.2% incompatibility in the HCV+ group and only 1.3% in the HCV(-) group (P = 0.04). Donor hepatitis C status does not impact on graft or patient survival after liver transplantation for HCV+ recipients. Their survival was equivalent, if not better, compared with the control group. Using HCV+ donor livers for transplantation in HCV+ recipients safely and effectively expands the organ donor pool. •
SourceURL:http://www.gastrohep.com/ Taken with thanks from the HEPV-L info list
Phase II Hepatitis C Trial Initiated by Ribozyme Pharmaceuticals Oct. 8 /PRNewswire/-Ribozyme Pharmaceuticals (RPI) (NASDAQ:RZYM) today announced the beginning of a multi-centre Phase II clinical trial utilizing HEPTAZYME™ for the treatment of patients with chronic hepatitis C. HEPTAZYME, developed by RPI, is a direct anti-viral therapeutic specifically engineered to target the hepatitis C virus and has shown potent anti-viral activity in pre-clinical models. The study is designed to evaluate HEPTAZYME safety and efficacy when administered alone and in combination with interferon. According to Principal Investigator Myron Tong, M.D., Ph.D, Chief of the Liver Centre, Huntington Medical Research Institute, Pasadena, CA, and Professor of Medicine, University of Southern California, "Whether as monotherapy or in combination with interferon, HEPTAZYME offers significant promise for the four million Americans we believe to be infected with this deadly disease. It offers a potentially exciting treatment advance over presently available therapies due to the drug's high degree of specificity and anticipated low side effect profile." Additional investigators and HEPTAZYME clinical sites include Dr. Gregory T. Everson at the University of Colorado Health Sciences Centre, Dr. Ira Jacobson at Cornell University Medical Centre, New York Presbyterian Hospital, Dr. Donald Jensen at Rush-Presbyterian-St. Luke's Medical Centre, Dr. John McHutchison at Scripps Clinic and Dr. Eugene Schiff at the University of Miami School of Medicine.
Currently available treatments are effective in up to 50% of patients, leaving a significant number with no available therapy. In addition, current therapies are often associated with serious side effects that many patients find intolerable," said Howard W. Robin, President and CEO at RPI. According to Eugene Schiff, M.D., Professor of Medicine and Director of the Centre for Liver Diseases, Miami, FL, "This is a smart virus, generally unrecognised until recently and able to mutate and continually develop new subtypes. While it would be unrealistic to develop a therapy for each HCV strain, HEPTAZYME's unique ability to specifically target the conserved region of the virus - an area common to all subtypes makes this approach both appealing to researchers and potentially useful for patients desperate for new hope in the fight against hepatitis C." Despite broad publicity, hepatitis C remains largely unknown or is misunderstood by many of those now believed to be infected. "Most are surprised to learn that they are infected and often reject presently available remedies because of the unpleasant side effects together with the uncertainty of a response. The HEPTAZYME trial is therefore significant in that it offers hope for a safe and effective therapeutic alternative," Dr. Tong concluded. Ribozymes are the product of Nobel prize winning research and are synthetically engineered to act as "molecular scissors" capable of cleaving target RNA in a highly specific manner, blocking gene expression and preventing production of unwanted proteins. In addition to its therapeutic and diagnostic pipeline, RPI is also leveraging broad based nucleic acid technology for applications in genomics, proteomics, and individualized therapeutics. A ribozyme for treatment of Hepatitis B is in preclinical studies. This press release contains forward-looking statements that involve risks and uncertainties, and actual events or results may differ materially. •
Abridged press release - taken with thanks from the HEPV-L info list.
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Advances in Hepatitis C
This study showed that most patients with genotype 4 had mild disease on liver biopsy and that these individuals seemed to respond as well to combination therapy as those infected with genotypes 2 and 3.
Abridged from an article by David Bernstein, MD
Interferon Monotherapy Failures
Part 2
Treatment-Naive: Haemophilia Certain patient groups have previously been excluded from hepatitis C treatment trials. Ronald Fried and co-workers [5] reported on the treatment of haemophiliacs and patients with other clotting disorders with combination interferon alfa-2b plus ribavirin given for 48 weeks. Forty-two patients with clotting disorders were enrolled in this multicentre trial. All patients were negative for antibody to HIV. A sustained viral response of 40% was seen in all patients; 25% of patients with genotype 1 and 55% of those with genotype 2 and 3 had a sustained viral response. Fourteen percent of patients required a dose reduction due to development of significant anaemia. Another 14% of subjects had treatment discontinued because of severe side effects. No adverse effects related to bleeding were caused by the interferon plus ribavirin therapy. The study authors concluded that the results of this trial were comparable to those of randomised trials in non-haemophiliacs, and that chronic HCV infection in patients with clotting disorders should be treated with interferon plus ribavirin combination regimens.
Each patient received an induction dose of 10 million units of interferon alfa-2b daily for 2 weeks and was then started on combination interferon alfa-2b plus ribavirin for 52 weeks. All patients received a total interferon dose of 780 million units and ribavirin at a daily dose of 1000-1200 mg, based on body weight. Participants were followed for 78 weeks following commencement of combination therapy. A sustained virologic response of 77% was achieved in all patients. Ninety percent of nonresponders and 71% of relapsers had a sustained viral response. There were no breakthroughs on therapy and the overall relapse rate was 8%. The study authors concluded that combination interferon alfa-2b plus ribavirin therapy is effective in this subpopulation of chronic hepatitis C patients with genotypes 2 and 3 who are virologic nonresponders to interferon monotherapy. Thus, combination therapy should be offered to the subset of interferon nonresponders who have favourable genotypes.
Recurrent Hepatitis C Following Liver Transplantation
Genotype 4 Response Genotype 1 is believed to be the most resistant to therapy, whereas genotypes 2 and 3 are more responsive to therapy. Genotype 4, a less common HCV genotype seen in the United States, has been proposed to be similar to genotype 1 in terms of its response to treatment. Ramrakhiani and colleagues [6] reported on the clinical features and response to therapy of patients infected with HCV genotype 4 in the United States. Fifteen patients with genotype 4 disease were included in this study. Sixty-seven percent of these patients had a sustained viral response to combination therapy.
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Pimstone and colleagues [8] reported on the treatment of 24 patients with HCV genotypes 2 and 3 who had previously failed interferon monotherapy and been placed on interferon alfa-2b plus ribavirin combination therapy. Thirteen of these patients were previous nonresponders, and 11 were interferon monotherapy relapsers.
Hepatitis C is the leading indication for liver transplantation in the United States. Unfortunately, hepatitis C viremia is seen in nearly all patients following successful liver transplantation for cirrhosis secondary to hepatitis C infection. Recurrent infection is an important cause of progressive fibrosis and cirrhosis after liver transplantation, with as many as 20% of patients progressing to cirrhosis within 5 years of transplantation. Firpi and associates [7] reported on the use of combination interferon alfa-2b plus ribavirin in liver transplant recipients who had histologic recurrent hepatitis C. Patients with significant
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fibrosis or cholestatic disease were treated with interferon alfa-2b at a dose of 3 million units thrice weekly plus ribavirin (800-1000 mg/day) for 12-18 months. Fifty patients were enrolled in the trial. The sustained viral response to therapy was 20%. Paired liver biopsies were available in 31 patients at 1 year and in 12 at 2 years. For those patients who achieved viral eradication/suppression, there was no significant progression of fibrosis after 1 year of therapy. The study authors concluded that treatment with interferon alfa-2b plus ribavirin in patients with recurrent hepatitis C after transplantation was effective in inducing a sustained virologic response in 20% of cases. A randomised, controlled trial is needed to determine the histologic effect of viral eradication in the post-liver transplantation setting.
Alternative and New Therapies Two abstracts [9,10] addressed the role of various Chinese herbal preparations for the treatment of hepatitis C. No consensus was reached by these studies, which showed no role for the herb, CH100, in leading to viral clearance from blood. Lin and colleagues [11] reported on levovirin, an L-isomer of ribavirin, for the treatment of hepatitis C. Levovirin has similar properties to ribavirin, but it is not retained in red blood cells in partition experiments. Whether this prevents the development of a ribavirin-like anemia must be further investigated. This new agent has excellent pharmacokinetic, genotoxicity, and animal safety profiles. Phase 1 data show that levovirin is well tolerated in healthy volunteers at dosages of 200-1200 mg daily. Lurie and associates [12] investigated the combination of interferon alfa-2b and histamine dihydrochloride for the treatment of previously untreated patients with hepatitis C. Histamine dihydrochloride is believed to function as an immune-enhancer for interferon therapy by protecting both NK and T cells from monocyte-induced inhibition. One hundred and twenty patients received interferon thrice weekly and were randomised to receive 1 of 4 doses of histamine dihydrochloride for 50 weeks to determine safety and efficacy of histamine as combination therapy with standard interferon alfa-2b. Therapy discontinued if 12-week serum HCV RNA titer was positive. At 72 weeks or end of follow up, 40% of all patients had a sustained virologic response.
Thirty-eight percent of genotype 1 patients and 29% of patients with a high viral load had a sustained virologic response. This study is intriguing because histamine was well tolerated. However, these results are difficult to interpret because the study did not include a control group that did not receive histamine. Additional studies with this combination are therefore warranted.
Concluding Remarks Material presented during these meeting proceedings has introduced several new "advances" in therapy for hepatitis C. We have learned, for example, that acute hepatitis C should be treated for the purpose of preventing chronic disease. Additionally, many new therapies are undergoing evaluation for their role in the treatment of patients with hepatitis C. In this setting, sustained viral response data for pegylated interferon alfa-2a plus ribavirin have shown significant improvements over standard therapy and pegylated interferon monotherapy. Novel medications, such as levovirin and histamine dihydrochloride, may also offer improved responses over standard ribavirin.
References 5. Fried R, Meili E, Peter K, et al. Ribavirin and interferon alfa-2b combination treatment of chronic hepatitis C is effective in patients with clotting disorders. Gastroenterology. 2001;120:A-382. 6. Ramrakhiani S, Bacon BR, Varma SC, et al. Hepatitis C virus type 4 infection in the United States: clinical features and response to therapy. Gastroenterology. 2001;120:A-381. 7. Firpi RJ, Nelson DR, Soldevila C et al. Combination of interferon alfa-2b and ribavirin in liver transplant recipients with histological recurrent hepatitis C. Gastroenterology. 2001;120:A-93 8. Pimstone NR, Canio JB, Chiang MH, et al. Ribavirin/ interferon alfa-2b therapy is very effective in the treatment of chronic hepatitis C genotype 2 and 3 patients who have failed to respond virologically to IFN monotherapy. Gastroenterology. 2001;120:A-382. 9. Sladden TJ, Batey RG, Keefe N. A trial of Chinese herbal medicine for chronic hepatitis C. Gastroenterology. 2001;120:A-382. 10. Mollison LC, Totten L, Hovell C, et al. A randomised double blind, placebo controlled trial of Chinese herbal preparation (CH100) in chronic hepatitis C. Gastroenterology. 2001;120:A-384. 11. Lin C-C, Tam R, Orr R, et al. Development of Levovirin as a second generation ribavirin for the treatment of chronic hepatitis C. Gastroenterology. 2001;120:A-569. 12. Lurie Y, Hyle R, Gehlsen KR. A phase 2 study of the combination of histamine dihydrochloride and interferon alfa-2b as initial therapy in chronic hepatitis C patients: 48 and 72 week results. Gastroenterology. 2001;120:A-381.
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Hepatitis C Community News
Adapted from the original article by David Bernstein MD posted on the HEPV-L Info list.
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Vietnamese Street Work / Mobile Clean Needle Project
At the commencement of the project, the VCASA found it essential to have a developmental stage of the project. This involved consulting with relevant service providers, young Vietnamese users and Vietnamese parents. Ten consultations were completed with service providers and 10 with young Vietnamese users. One consultation workshop was held with Vietnamese parents, with 38 participants. The developmental stage also involved literature reviews and the formation of an advisory steering committee involving members from VCASA, SAPOL, SAVIVE, Parks Community Health Service, PEACE, Pt Adelaide Enfield Council, DASC and the Hepatitis C Council.
Peer Educators
The Vietnamese Community in Australia / SA Chapter Incorporated (VCASA,) has developed and implemented a Street Work and Mobile Clean Needle van since March 2001. The project has included a number of different areas including community education about Hepatitis C, bilingual resource development, peer education, clean needle program and street work.
Outcomes from the developmental stage included a 3-month pilot program, where the VCASA employed 3 Peer Educators who are ex- and current users to work on the Clean Needle Program. This pilot program was successful, whereby the Peer Educators took a leading role in promotion of the program and advising the VCASA on drug issues in the Vietnamese Community.
Peer Educators and mobile van dragon logo
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After evaluation of this pilot program by a working group, it was decided that the VCASA should continue the Peer Education program and the program will now continue for 12 months. The VCASA now has 4 Peer Educators employed on the CNP project. The Peer Educators’ role will include; providing information to their peers about hepatitis C and safe injecting practices, focus group activities, group programs, mobile CNP and providing training on the Vietnamese culture. They will be supported in their activities by the Street Workers at the VCASA. The VCASA fixed CNP site was established in July 01 and is being utilised by Vietnamese users. The Mobile Clean Needle Van began on November 17th 01 and has already been successful in engaging intravenous users from various cultural backgrounds to access clean injecting equipment from the mobile van. The mobile van receives phone calls and books in appointment times, but also sits in hot spots in the western areas. Food packs, toiletry packs and emergency bus tickets are also distributed from the mobile van. The mobile van does 2 weekend shifts, Saturday evening 7pm-11pm and Sunday evening 5pm-9pm. The contact number for the mobile van is 0421 780 117. If you are interested in promotional materials about the van, please contact Nhung (Ruth) on 82688925. Bilingual health labels for fit-packs are also available.
Peer Educators
Community education has included newspaper articles about drug issues and hepatitis C in the weekly Vietnamese newspaper Nam Uc, distribution of information and stalls at main cultural festivals, and workshops with both young people and parents about hepatitis. Through community education the program is gaining some support from Vietnamese parents.
Volunteer Worker on mobile van
The Street Work aspect of the project involves the VCASA street workers doing outreach in popular hot spots for young Vietnamese. It has been identified from the young people and other stakeholders that Tea Tree Plaza Modbury, Arndale and Adelaide city are hot spots. The Street Work team works on Friday and Thursday evenings. Their role is to make contact with young Vietnamese who need assistance and link them in to services at the VCASA, including the Clean Needle Program. Despite some concerns expressed by stakeholders that the VCASA may face some barriers to implementing this project, the project is ahead of planned schedule and has been successful in not only engaging Vietnamese intravenous users, but also other contacts from various backgrounds. The success has been largely due to the Peer Educators who have played the main role in steering and developing this project. The project has now expanded to include 4 employed Peer Educators, 4 volunteers and 2 Street Workers. I look forward to the project growing even more.
The Vietnamese Community also found it essential to gain the support for the CNP from the wider Vietnamese Community. Therefore community education about hepatitis C and groups at high risk has been essential.
Nhung (Ruth) Chau Street Worker Vietnamese Community in Australia/SA Chapter Inc. (VCASA.)
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A Survey of Women Living with Hepatitis C in Victoria and the ACT.
The Good News Health and Medical Care •
A summary of findings
“being healthy – good diet and exercise especially yoga…is the most important thing that has helped me deal with hep C”
Investigators Professor Sandy Gifford* Dr Mary O’Brien** Dr Cathy Barnwell*** Dr Gabriele Bammer***
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When women received their diagnosis most were told face-to-face (80%), by a doctor (84%). About two thirds of these women were also given useful information about: -how HCV affects health (61%) -how HCV is spread (61%) and -reducing their alcohol intake (65%)
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Of those women drinking alcohol when diagnosed with hepatitis C, most (76%) had reduced or stopped drinking alcohol.
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At the time of the study half the women (49%) were seeing a doctor for their hepatitis C and most of these women (90%) had confidence in their doctors’ level of knowledge about hep C.
Project Coordinator Ms Maria Karvelas*
Project Officers Ms Niki Main*** Ms Nicola Thomson* * School of Health Sciences, Deakin University ** Australian Research Centre in Sex, Health and Society, LaTrobe University *** National Centre for Epidemiology and Population Health, Australian National University
The Study There are approximately 60,000 women living with hepatitis C in Australia. Very little is known about their health and social needs. The Women living with Hepatitis C Study took place in 2000 in Victoria and the ACT. The aims of the study were: • to collect baseline data an the social and health concerns of women living with hep C, and • to identify gender specific needs for medical care and social support services
Relationships: Family, Friends and Partners •
About two third of women (64%) had a regular sexual partner and about half of these women had a partner without hep C.
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Of the women with a regular partner who were hep C negative, 57% said that hep C was not a concern in their sexual relationship.
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When women disclosed their hep C status, most partners (77%) were supportive, whether or not they themselves had hep C.
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Women were as likely to receive emotional support from friends and partners, as from other people with hep C or doctors.
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More than half (54%) were satisfied with their level of emotional support.
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32% of women were living in households with dependant children. Most of these women (97%) took special care in attending to their own and others’ blood spills.
Recruitment Strategies In order to reach women who had contracted hep C in different ways and who had different experiences, questionnaires were distributed through a variety of agencies. 75% of these questionnaires were completed and returned. 662 women participated in the study.
Percentage of women recruited from different venues Clinical services 14% IDU/outreach organisations 44% Alcohol & drug services 15% Community groups/support groups 26%
How did Hep C Affect Women’s Lives? Women had both good and bad experiences in the following areas- health and medical care; relationships; and social and work life.
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Slightly more than half (54%) of women described their health as good to excellent. Some found they could improve their lives by actively managing their health.
Social and Work Life •
Most women had not experienced discrimination in the workplace because of their hep C.
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The Bad News Women identified areas within their own lives and in interactions with other people and the medical system, where things could be better.
Health and Medical Care
• A substantial proportion of women (46%) described their health as only fair to poor. This is a higher proportion than among most women in Australia. • More than half the women (55%) had experienced hep C symptoms, usually including tiredness (78%) and nausea (42%). • More than two thirds of women (71%) were not given any pre-test counselling or information. • Less than one third (31%) of the women surveyed said they were satisfied with the way they got their diagnosis. “I was emotionally distraught after finding out, not only with a total lack of understanding but with a lack of caring really” (Jan, 36 years). • Less than half the women (49%) were referred to either a hep C support group or specialist doctor when they were first diagnosed with hep C. “When I was diagnosed, no services or information was available. I had to research myself” (Debbie, 43 years). • Of the women who had a pregnancy (n=174) after being diagnosed with hep C, 9% were advised to have a termination because of their hep C. • Only one third of all the women surveyed (32%) said they had ever been given information by a doctor or midwife on hep C and pregnancy. • Nearly one half (48%) of women said that they received less favourable treatment from health professionals because of their hep C.
Making ends meet Women with hep C struggled to make ends meet • Almost half the women were living below the poverty line. • Nearly half (48%) found it very difficult to meet the costs of one or more of the following: rent, utilities, clothing, transport and food. Women and injecting drug use (IDU) Compared to women who had never or no longer injected women currently injecting were: • More likely to be living below the poverty line, • Less likely to have contact with a hep C support organization but more likely to be in contact with a user group, • More likely to be treated negatively by dentists, pharmacists and nurses.
Taking Action There is a need to: • Improve access to information and support for women at the time of diagnosis • Ensure women receive pre and post test counselling • Reduce the stigma attached to HCV in general community especially among health care professionals • Improve care and support for women who inject drugs • Improve the knowledge among health care professionals about HCV and women's health especially as it concerns pregnancy • Remove the economic barriers that women face in relation to accessing care and treatment including natural therapies
For more information Professor Sandy Gifford Phone 03-9251 7288 E-mail sgifford@deakin.edu.au www.hbs.deakin.edu.au/hepc/
Acknowledgements
Relationships family and friends
• A small number of women (12%) said that their hep C had negatively affected a new sexual relationship in the last 12 months. • Over a third (36%) of women had their hep C status disclosed without their permission usually among family and friends.
Social and work life
• A small number of women reported that in the last year their HCV status was cause for: -Being refused a job (4%), -Domestic violence (5%), and -Access to children threatened (6%).
Thanks to the women who completed the survey and to the community organizations and services who assisted us. We also acknowledge input and support from: M Beers-The Australian National University. Sandy BrietHaemophilia foundation The Alfred Hospital Melbourne. Mary Burns-Hepatitis C Helpline Melbourne. Jude ByrneAVIL (Australian IV League). Carlo Campora-Hepatitis C Council Of Victoria. Anouk Dev-Monash Medical Centre Melbourne. Denise Haldane-VIVAIDS (Victorian Injectors Group). Wendy Holmes-Macfarlane Burnet Centre Melbourne. Marion Kainer-CDC Atlanta U.S.A. Suzanne O’CallaghanAccess Information Centre Melbourne. Jacqui RichmondSt Vincent’s Hospital Melbourne. Katrina WatsonSt Vincent’s Hospital Melbourne. Tarquin McPartlan-CIN (Canberra's injecting group). NHMRC Strategic Reserve Fund on Hepatitis C Social and Behavioural Research
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Illness is normal and everywhere, but we often fail to recognise the fear of those who are suffering, writes Meg Gurry.
Following a heart valve operation with many complications, the author wrote the following: I crossed an invisible but nevertheless real boundary to become part of the undifferentiated "sick" of our society. It was not a pleasant place. I did however, learn a few things along the way. The experience gave me an insight into the psychologically transforming nature of illness, and just how emotionally complex the whole process can be. In her book, Tiger's Eye, Melbourne historian Inga Clendinnan discusses her experiences as a liver transplant patient. One of her most interesting revelations, I felt, was her observation that the gap between the sick and the well in our society is as least as great as the other big gaps of race, gender and class. It certainly felt that way for me. Now having crossed back to rejoin the "healthy" side of the divide, I'm left wondering how best we can reduce it to make the experience of illness more manageable. This is not, strictly speaking, a medical problem. Rather it is a question of medical culture and therefore, one in which the medical profession must be centrally implicated. It was during slow recovery time that I began thinking about sickness and health in ways I never had before. What had I learnt? My first epiphany related to the debilitating impact of fear in seriously ill patients. Once (ill) …. I became psychologically and emotionally paralysed by fear. This in turn deepened my sense of alienation from "normal" life, further inhibited my digestive system, and reduced my strength even more. It seems to me that the medical process has not yet accommodated and worked out adequate responses to patients' fear……The night before my major surgery, the anaesthetist listed all the disasters that could eventuate in the next few days, including a 1% chance of dying of stroke. It must be possible to find a better form of words, a way to reassure patients that their situation – and their fear – is normal. But, particularly once the (complications) started, this was not my experience.
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I was not reassured. Indeed, the most common response from the medical staff was surprise: "Aren't you lucky," was a frequent observation. They often added that they hadn't "seen anything like this for years". While it was comforting to know my case was not a daily occurrence, feeling like a freak, a statistical anomaly, made the future, which I so desperately needed to imagine, seem precarious and remote. It was during regular trips from my hospital bed down to radiology that I realised the extent to which I had shed my former identity and become part of another reality. There were no individual differences here. In our dressing gowns, with hospital blankets over our knees, we were lined up in wheelchairs, our various bottles and drips on display and medical records on our laps. We each silently and obediently waited our turn, the casual social chatter among the young medical staff around us only served to underline the difference between us and them. It was here I felt most defenceless, vulnerable and – for reasons I don't fully understand – humiliated. The humiliation was somehow tied up with a sense of failure, a terrible fear that I had let down those closest to me. As I lay ill and miserable in hospital – unsuccessfully combating my sickness, in fact at one stage getting sicker by the day – it distressed me that I was putting my family through such misery. Friends made many suggestions: try meditation, kinesiology, vitamin injections, draw on your inner strength to beat the infection. This might sound like helpful advice, genuflecting as it does towards the non-traditional sources of health and healing, but at the time it seemed more like a variation on the "pull-yourself-together" theme, and my failure to do so only made me feel worse. The problem was that I had no inner strength. I had no strength at all, so all the advice only exacerbated my feelings of impotence. I was reminded of a friend who had died from cancer and who, towards the end of his life, became increasingly frustrated with all the books he was being given, books on the success stories of those who had fought the good fight and survived. He also, I remembered, talked of a sense of failure. I'm still unable to resolve this question: who should I have talked to about my fears, my feelings of failure? I couldn't talk to my husband or children because I did not want to increase their anxieties. Their daily visits could be difficult enough, for them and me, as they anxiously (and unsuccessfully) searched my face for signs of recovery.
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Perhaps I should have broached it with my doctor. I liked and trusted him. But I think I was worried about becoming a "difficult" patient. In fact, I felt difficult enough - and he was busy enough, dealing with my ever-compounding physical problems – without asking me to take me on emotionally as well. The hospital does provide a pastoral care service. Maybe I should have turned to that, but sharing my inner world with strangers seemed far too confronting. There are, I believe, some answers. As I grew stronger, I was able to see more clearly that it was possible to identify factors that help to bridge the gap between the well and the sick, between coping and not coping with serious illness. But these answers won't be found in the cutting-edge technology of modern medicine. For me, it was the small acts of kindness and empathy of the medical staff – their acknowledgment, in essence, of my pain, fear and anxiety – that made the big difference.
On a more abstract level, I learnt how we abnormalise illness in our society, how frightening that is for those who become sick and, in turn, how little space there is in the system (or in our lives) for an acknowledgment of this fear. Yet, since my operation, in a number of deeply satisfying conversations with many friends and relatives, I have been struck by just how many people are affected by serious illness, either their own or that of a close family member or friend. Illness, in fact, is not abnormal at all. So why do we act as if it is? How can we best teach our young doctors and nurses that the spontaneous, empathetic response is still an essential part of the process of caring for the sick? Dr. Meg Gurry is a former lecturer in politics at La Trobe University, Victoria, Australia. •
Excerpt from The Age newspaper. Saturday November 24, 2001
Keen to get any recorded
Life after Treatment Stories In January 2001, an AHC Reference Group will meet to commence the process of developing a new resource on the subject of life after treatment. To inform this process I am very interested in accessing any personal stories that may have been written/recorded for public use on the experience on life after treatment. This includes stories where treatment has resulted in a sustained response along with stories where it has not. If you have published or have access to any such stories, can you please seek the appropriate permission of the author and forward them on to Leslie Wightman at the AHC. Some quotes may be taken from these stories at a later stage for inclusion in the final resource. All quotes will be used in a non-identifying manner. When seeking permission can you please inform individuals that quotes may be used in this manner. I would greatly appreciate it if you could forward these stories to me.
Please send any stories to:
Leslie Wightman Education Officer AHC PO Box 357 Curtin ACT 2605
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What’s in a name? The following is an extract from The Australian Media Guide to Hepatitis C; 2001 Edition. Hepatitis C is now the most commonly notified infectious diseases in Australia. It is a comparatively new public health issue, not well understood in the community. Misconceptions and misinformation about the virus and people affected by it are widespread. The following section offers alternatives to common terms, suggested usage which reflects more positively on people with hepatitis C and which contributes to more informed public discussion about the nature of the virus and its effects.
TERMS TO AVOID
ALTERNATIVE TERMS TO USE
CARRIER •
•
This term is stigmatising and offensive to many people living with hepatitis C and attempts to differentiate between people who have cleared hepatitis C and those who have not.
•
person / people with hepatitis C
•
hepatitis C positive person
•
person living with hepatitis C
•
person / people who inject drugs illicitly
•
person / people who inject drugs
•
injecting drug user (IDU)
• • •
person / people with hepatitis C hepatitis C positive person person living with hepatitis C
• • •
person / people with hepatitis C hepatitis C positive person person living with hepatitis C
The term portrays the subject as a public health threat, rather than as a person affected by chronic illness.
JUNKIE •
•
This term is stigmatising, as it implies a stereotypical image of someone who injects drugs. Use of this term further marginalises people who are often disadvantaged socially, and prevents them from accessing health services or from being actively involved in their own and others’ health promotion.
HEP C VICTIM, HEP C SUFFERER •
This implies a person is powerless, and has little control over their condition.
A PERSON DESCRIBED AS ‘BEING HEPATITIS C’ •
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Sometimes people with hepatitis C are described as ‘being hepatitis C’. This is confusing, and implies that hepatitis C consumes their whole lives.
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INNOCENT VICTIMS •
•
This term is sometimes used to describe people with medically acquired hepatitis C infection, or children who have acquired hepatitis C transmitted from their hepatitis C positive mother during pregnancy or at the time of birth. It incorrectly implies that people infected in other ways are guilty.
•
person / people with hepatitis C
•
people with medically acquired hepatitis C
•
children with hepatitis C
•
hepatitis C positive people
rd
3 Australasian Conference
hosted by the
On behalf of the Blood Borne Virus Consortium, I am delighted to announce that Melbourne Australia will host the 3rd Australasian Conference on Hepatitis C, at the Melbourne Hilton, 25-27 March 2002. This Conference is the leading Asia/Pacific gathering for Hepatitis C Research and Treatment. It has been held twice before to oversubscribed audiences: in Sydney (1997) and Christchurch (NZ) (1999). It is an unusual Conference, bringing together speakers and participants from the widest range of Hepatitis C interests. Five major Streams in the Conference reflect this - Basic Sciences (including virology and laboratory diagnosis), Clinical Sciences, Epidemiology and Social Research, Policy and Prevention, and Community Responses. As well as having world-leading expertise in each of the Streams, the Conference endeavours - highly successfully, we believe - to engage participants with different sectoral interests in dialogue and the crossfertilisation of ideas. In essence, your presence at this Conference will be before the entire Hepatitis C community of interest - prescribers, patients, support groups, researchers, diagnosticians in and out of the laboratory, politicians, health bureaucrats and others. This is the only occasion of its kind in our region at which such a broad spectrum of the Hepatitis C community comes together. We put a particularly keen effort into ensuring that there is a large representation of treating doctors: gastroenterologists, infectious disease physicians and general practitioners. To this end, the Conference provides keynote and other speakers who will address current issues around the diagnosis and management of chronic Hepatitis C infection, and provide the most up-to-date information on these subjects. Dr Nick Crofts Conference Chairman Macfarlane Burnet Centre for Medical Research Rates (all rates quoted include GST) Registration (members of Auspicing societies) Registration (non-members) Student rate (a late penalty of $90 applies after February 1st 2002) Day Registration (includes social program of the day)
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$490 $540 $290 $250
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Who wants to be a Volunteer ?
The doctor who ordered the test for hepatitis B & C was as helpful as he could be. With little information available on hep C, my doctor referred me to a specialist at one of the major hospitals in Adelaide. I had numerous blood tests and later on a biopsy, which basically told me I had mild chronic persistent hepatitis. I was still in the dark about what this actually meant and the little information from the specialist wasn’t enlightening at all.
Dean does. The years following my diagnosis with hepatitis C in “1991”, have been life changing. Living now with the virus for twenty years, the changes cover almost every aspect of my life. After being diagnosed, I needed to understand the meaning of hepatitis C for myself, how this affects my life and those who share my life, sometimes briefly, others for many years. It has been a very interesting journey, with numerous periods of complacency.
I was offered interferon mono-therapy, but declined the offer. I needed to know more about this virus called hepatitis C, and also about the treatment being offered. I wasn’t going to jump into the unknown and go on treatment without first finding out about what I was getting into. In 1993, I phoned the Westmead Hospital in NSW. I received some information over the phone about the Australian Support Group, which provided information and support for those affected by the virus. Over the following years I saw numerous doctors, specialists etc, but little help or information was forthcoming, so for a time I became quite complacent and did very little about my hep C. After approximately 7 years, I became a member of the Hepatitis C Council of SA (1998). This was my first contact with the SA Council. I received various newsletters and became aware of the support groups run by the Council. I went along to their support groups to find out more about different issues affecting those who are hepatitis C positive. These groups were very informative, and one of the most important aspects of the group was that you could talk with other people who were hepatitis C positive. I was amazed at the number of people in South Australia alone that are positive, and Australia wide was eye opening. So after numerous support group meetings I decided to become a volunteer at the Council. Having some experience in volunteering in the past, this was an area I could put my energies into, and make a small difference in the wider scheme of things.
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I have now worked for the Council for over two years and as I mentioned earlier in the first paragraph, my whole life has changed. This being the year of the volunteer, many people already know the value of volunteering in their community and the benefits derived from volunteering. Working in the community is of great value to the community, as well as to the volunteer (rewarding for both parties). I have learned different skills in the job, in training programs, and gained confidence by working in a supportive and caring atmosphere. I feel fortunate to have had the opportunity to volunteer at the Council, from which I have benefited greatly.
Mail Bag Dear Hep C Newsletter Editor, As a HCV+ person who lives rurally, I would like to say that you don't have to be geographically-challenged' to feel isolated when hep C affects your life. You can live smack-bang in the middle of the biggest city, surrounded by family and friends; but if you alone have hep C in that circle, you can feel lonelier than any hermit in the Mallee or the mountains. I knew I had hep C for a full eighteen months before I actually met another hepper in the flesh, and despite having a loving family, it was regular contact with other Australian heppers that I sometimes needed. A few of us who felt the same way, decided to do something about it, and in mid-October 2001 we started a Yahoo Group called AUShepC. It is basically a meeting place for Australians affected by hepatitis C, and the only rule we have is, "be nice to each other". It is a place to post the latest hep C information, to give and receive support, a place to swap stories and experiences. It can be found on the internet at http://groups.yahoo.com/group/aushepc
To become more proactive in one’s health and to be able to make informed choices about lifestyle, treatment etc. based on good and well researched information is a valuable thing. My only wish at this stage is that more people in the hepatitis community would come forward and become members of the Hepatitis C Council of SA and become proactive in their own health and well being. The greater number of people involved and active within the community can only help in changing perceptions about hep C and reducing the stigma of having hep C.
By the end of November we were approaching 50 members. Some of us can't stop posting, others are unashamed 'lurkers', having never posted once. Some of us have posted our photos. The point is that you can choose your own identity when you join, and share as little or as much of yourself as you like. There is a kind of freedom in anonymously participating with other Aussies with similar experiences. There is also a kind of confidence that if you are down and in need, someone, somewhere in this big country, will return post to you. From Broome to Eden, we are just a mouse-click away from each other. I'd like to extend an invitation to all Australians who live or work with hep C, to join in and make our place yours. Membership is free and there are no commitments necessary. Please feel free to post Council notices or any local support group activities, or, in fact anything at all remotely to do with hep C. Nobody 'owns' AUShepC; we're a sort of electronic community noticeboard that hopefully reflects the greater hep C community across Australia. Come along, you never know who you'll meet. Cheers to all...... Archer A rural hepper. (Name & address withheld but supplied) PS. If you have trouble getting to AUShepC, email me at sreiszele@bigpond.com with your tag and email address, and I'll fix it for you.
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Hepatitis C An Australian Perspective World-wide, an estimated 170 million people are infected with the hepatitis C virus and 3 to 4 million people are newly infected each year. In Australia, hepatitis C is the most commonly notified communicable disease, with an estimated 200,000 people currently infected and 11,000 new infections each year. This book provides a comprehensive, authoritative and up-to-date guide to hepatitis C. Following a chapter, ‘Living with hepatitis C: a constant bloody struggle’, in which 5 people living with hepatitis C tell their stories, the book’s 21 chapters are grouped into five sections: ·
The virus (virology and molecular virology, laboratory diagnosis, vaccine development);
·
The disease (pathology and pathogenesis, natural history, extrahepatic manifestations, HCV/HIV co-infection);
·
Clinical management (assessment and monitoring, antiviral therapy, alternative therapies, decision-making);
·
Living with the virus (quality of life, discrimination);
·
The epidemic (transmission, epidemiology, transfusion, epidemiology among IDUs); and
·
Responding to the epidemic (developing policy, the role of community-based councils, peer education, gaining control of the epidemic).
The chapters on the virus, the disease, treatments and the epidemic are state-of-the-art expositions of current knowledge by acknowledged experts in their field. Many of the chapters in ‘Living with the virus’ and ‘Responding to the epidemic’ document Australia’s innovative and effective policy and program development in response to the hepatitis C epidemic. The book will prove essential to all with an interest in hepatitis C: those infected, their families, friends and colleagues; and physicians, public health workers, social and community workers, counsellors, biomedical scientists, policy-makers, and students. Bibliographic details Published, September 2001. 229x153mm. 400 pages. Includes bibliography and index. Paperback. ISBN 0-9578617-2-9. $85.00
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Media Release October 2001
World First Trial To Help People With Chronic Hepatitis C. It is estimated that presently in Australia there are 200,000 individuals chronically infected with hepatitis C virus. There is limited success with current treatments of hepatitis C and only 25% of individuals have sustained clearance. In a world first trial, the Women’s and Children’s Hospital is utilising a heat –killed Mycobacterium Vaccae to stimulate a response that may convert people with chronic hepatitis C to a non-infective state. Dr Paul Goldwater, Senior Clinical Microbiologist at the Hospital said, “This particular bacterium M.vaccae, occurs in regions of Africa that have extremely low rates of diseases like HIV and tuberculosis.” “It is thought that M.vaccae is an environmental agent that helps the body mount an immune response and this is why people living in those areas of Africa are better able to cope with some highly contagious diseases.” “The aim of the WCH trial is to establish whether immunisation of people with chronic hepatitis C given heat - killed M. vaccae, will help them rid themselves of the hepatitis Virus.” Dr Goldwater said. Previous studies have shown that M. vaccae helps raise a good immune response in a wide range of other diseases – rheumatoid arthritis, leprosy, melanoma and cancers of the cervix, ovary, lung, kidney and prostate. People with chronic hepatitis C who would like to take part in the trial or want further information about the trial are invited to contact: Leanne Hemer (Research Nurse) at the hospital on 8161 6080. Enquiries can also be made to Dr Paul Goldwater , 8161 7432.
Hepatitis C Community News
Infor ma tion & Suppor t Topics Feb-June 2002 Adelaide Information Evenings 6.30 pm-8.30 pm Feb 6th
Hepatitis C - The Basics
March 6th
Alternative Therapies for Hepatitis C
April 3rd
Treatment-Considerations for Family & Friends
May 1st
Guided Meditation
June 5th
Understanding Test Results
Women’s Coffee Morning 10.30 am-12.30 pm Feb 11th
Managing Symptoms
March 11th Meditation April 8th
Diet and Great Recipes
May 13th
Alcohol & Other Drugs
June 10th
Current Treatment Options
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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 8am—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 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 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. Ph: 8223 3433
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