HEP C COMMUNITY NEWS Spring 2001
Issue 18
to follow the Adelaide Information Evening Adelaide Central Mission Rooms 1 & 2 10 Pitt St Adelaide
Dr Paul Goldwater and Penny Mount Present HCV & Children
6.30 pm HCV & Children 8.00 pm AGM
Hepatitis C Community News
Issue 18
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IN THIS ISSUE 3
Medical Bill 2000 Council Services 00-01
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News in Brief
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Disclosure - Part 2
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Handy Hints
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Surveillance & Notification Explained
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Hepatitis C Council SA Inc 4 The Parade Norwood 5067
Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55 (GST inclusive)
Advances in Hepatitis
10 - 11
Disclosing to Children
12 - 13
You can request a zero-cost membership Donations do not attract GST
PEACE A Multicultural Program
14 - 15
Complementary Therapies Book Review
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Information in Italian
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Farewell Vanessa
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Mail Bag
18 - 19
Postal Address
Information / Support Group Guide for 2001
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Resource & Additional Service Guide
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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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Medical Practice Bill 2000 This Bill introduced into the SA Parliament by the Health Minister Dean Brown contains provisions for infection control of blood borne viruses that the Minister believes are designed to ensure patients are not put at risk of infection. The Bill proposes that Medical practitioners (and medical students) be required to have regular tests for blood-borne viruses, including hepatitis C and to discuss any implications with their medical practitioner. Medical practitioners will be required to report to the Board if they are treating another medical practitioner who has a prescribed communicable infection – and the Board has the power to immediately suspend registration to protect the health and safety of the public, pending the hearing and determination of a complaint.
and Environmental Health Act already contains adequate guidelines for healthcare workers performing ‘exposure prone’ procedures. The ‘approach’ contained in this Bill, where the person who has the virus is blamed – by having his/her privacy exposed and his/her livelihood threatened – only further feeds an environment of fear about hepatitis C and other blood-borne viruses amongst health professionals. We are already aware that most complaints of discrimination against people with hepatitis C come from health professionals and this situation will only deteriorate if health professionals themselves feel threatened by what is proposed in this Bill. We should instead be concentrating our efforts on regularly reviewing all medical procedures that contain some risk of transmission of blood borne viruses and encourage strict adherence to standard precautions – where all blood is viewed with the potential for carrying these viruses. This we know is the best way to minimise the risk of transmission of bloodborne viruses and does not require any discriminatory practices against any person. The Bill is due for a second reading in the Legislative Council on September 25th.
This Bill was introduced into Parliament by the Minister without consultation with the South Australian Advisory Committee on HIV, Hepatitis C and Related Diseases which has expressed great concern about the implications of this Bill as the ‘approach’ contained in the Bill is completely at odds with public policy in other jurisdictions both in Australia and overseas. The Hepatitis C Council of South Australia Inc believes medical practitioners and students, in common with all other South Australians, have the right to absolute privacy of their confidential medical information which should only be overridden where there is significant risk to the welfare of others. Only a small range of medical procedures pose any appreciable risk of transmission of blood borne viruses from health care worker to patient and the majority of medical practitioners do not ever perform such procedures. The SA Public
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The Year in Review REPORT ON COUNCIL SERVICES 2000 - 2001
INFORMATION SERVICES Telephone Information Service The Council received 680 calls requesting information during the year. 53% of calls were from positive people and 20% from a family member or friend – thus 73% of calls were from the Council’s primary target group – those affected by hepatitis C. The remainder of calls were from health sector workers and other workplaces. The geographic spread where location was recorded show that 81% of calls were from the metropolitan area and 19% from rural areas of South Australia. Consistent feedback from people affected by hepatitis C accessing information and support via the telephone services of the Council has been an expression of gratitude for being ‘listened to’ and having someone take the time so that concerns can be voiced and addressed by the correct information without the layers of judgement experienced by many. There were 279 referrals recorded for the year, including 81 to the Adelaide Counselling team; 38 to a GP Friendly; 17 to the Adelaide Dental Clinic and 7 to SAVIVE. With the move to the Parade during the year, the Council now had suitable premises to offer faceto-face interviews for members of the hepatitis C affected community. There were 30 of these interviews during the year. Production and Distribution of Print Resources 51,871 pamphlets, 3,654 Fact Sheets and 837 transcripts of guest speaker talks produced by the Council were distributed. In addition, the Council also distributed over 15,000 copies of resources produced by national groups. Apart from requests for written resources directly from members of the hepatitis C affected communities, requests for information on hepatitis C also came from a variety of agencies throughout South Australia. 82% of the agencies requesting resources were located in Adelaide, 17% were located in rural areas and 1% of requests came from agencies located interstate.
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Over 2,000 copies of the Hep C Community News were distributed to individuals and organisations throughout South Australia during the year. The Council’s Website www.hepccouncilsa.asn.au has local information on hepatitis C and Council services as well as links to other relevant sources of hepatitis C information. During the year, there were 9,660 ‘hits’ to this website. Community Awareness The Council participated in more public awareness events during the year by holding information stalls at a number of public events such as WOMAD; Big Day Out; The Moon Festival; Lifestyle festivals; Youth festival as well as the Royal Adelaide Show and the Tanunda Show. Two information stalls were also held in shopping centres at Elizabeth and Arndale. The Council in partnership with DASC, COPE, The Parks Community Centre; The Vietnamese Community and many other individuals also organised a full program of events for Hepatitis C Awareness Week in March. This year’s theme was Hepatitis C Spread the facts…not fear. Forty community health centres throughout South Australia also participated in Hepatitis C Awareness Week by holding displays and community events in their local areas. The week was launched by the Hon. Dean Brown, Minister for Human Services and many issues were highlighted in a variety of events with a diversity of guest speakers. Thankyou to all our guest speakers, sponsors, volunteers, organisers and participants in assisting the Council to spread the facts about hepatitis C.
EDUCATION SERVICES The two Council educators presented 85 education sessions during the year – 48 in the metropolitan area and 37 in rural and remote areas of South Australia. Additionally in rural areas, individual sessions were held for 26 health and community workers and 8 for members of hepatitis C affected communities. In total over 1,180 people attended education sessions during the year. Metropolitan Area Over 80% of education sessions held in the Metro area were in response to requests from various organisations as a result of contact with hepatitis C affected or ‘at risk’ clients; disclosure
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in the workplace; OH&S issues re transmission concerns. The remaining 20% resulted from direct promotion of these services to community health organisations, local Council, youth organisations and all Metro FAYS organisations. This year over 20% of education sessions in the metro area were held for youth or youth workers including a secondary school program in conjunction with Second Story and the juvenile detention centre. Youth organisations also responded well to targeting and many youth workers identified they are seeing an increase in young people who are hepatitis C positive or ‘at risk’. Information sessions were also offered to newly diagnosed people every three months during the year with an average participation of 5 to 6 people. Rural There has been a significant increase in the number of hepatitis C education sessions being held in rural and remote areas of South Australia during the year due to the employment of a rural educator. The geographic reach of these services has included Coober Pedy, Port Lincoln & Ceduna, Port Augusta, Port Pirie and Whyalla, and Mount Gambier. The rural educator has worked in partnership with the Aboriginal Drug & Alcohol Council and indigenous health and community workers have attended sessions in six locations. The rural educator has also worked with key staff from the Department of Correctional Services and has delivered education sessions for staff and inmates in all prisons in rural South Australia as well as for staff at the Refugee Detention Centre at Woomera. Positive Speakers The Council has actively promoted this program during the year as part of its education services and this year there were 32 positive speaker engagements, a 40% increase in the utilisation of this program. Positive speakers have been involved in the Council’s education services such as newly diagnosed sessions, information and support group events. DASC has also initiated positive speaker services in their regular training for the Clean Needle Program. Participant feedback from positive speaker engagements has been excellent and continues to be a significant education tool in breaking down the stereotyping of people affected by hepatitis C.
SUPPORT GROUP PROGRAM The Council held ten Information evenings during the year for members of the hepatitis C affected community and interested health workers. These evenings have a guest speaker and a question and answer segment. Topics this year included symptoms management; ’Should I Go on Treatment’; disclosure; cirrhosis; progression factors; natural therapies. The Council tries to keep a balance between alternative and orthodox treatment options in guest presentations. The Women’s Group has also been operating on a monthly basis throughout the year.
ADVOCACY Council staff and community members participate on a number of committees at the local, State and national level and have participated in a number of consultative processes and projects during the year including the Review of the Hepatitis C Response in SA; the national testing policy; HCV Social Research Agenda; Australian Hepatitis Council strategies flowing from the National Hepatitis C Strategy including the Media Project; Discrimination Strategy and Access to Treatment Summit. A limited number of individual advocacy issues were also addressed during the year. Following calls to the telephone information service re discriminatory practices in the Funeral industry, the Council was able to assist an individual to make a complaint through the Disability Complaint Service. Council staff also contacted Funeral industry representatives to hold education sessions on hepatitis C. Other individual advocacy during the year included follow up with issues re workplace disclosure; occupational needlestick injury and access to combination therapy in a rural area. Conclusion During this very busy year, the Council has continued to forge links at the local community, State and national levels of Australia’s response to hepatitis C and has continued to build credibility as an organisation offering high quality, responsive, flexible services on behalf of the hepatitis C affected community of South Australia.
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News in Brief Hepatitis C Researchers Give Mice Human Cells
Liver failure secondary to long-term hepatitis C infection is the number-one reason for liver transplantation in North America. There is no vaccination against hepatitis C, and current treatments work only in a select number of patients.
July 31, 2001 – A team of University of Alberta researchers has successfully created a mouse model scientists can use to test antiviral therapies against hepatitis C, a contagious viral disease that usually leads to serious, permanent liver damage. The disease afflicts about 175 million people worldwide.
Arising from this discovery, and in keeping with the vision and strategy of both the University of Alberta and the Alberta government, the investigators have founded a biotechnology spin-off company, KMTHepatech Inc., with the goal of actively working towards a cure for hepatitis C.
“We now have a viable way of testing new drugs which might ultimately help lead to development of a cure,” said Dr. David Mercer, the lead author of the scientific paper published in this month’s Nature Medicine journal. “This is certainly a major advance in the fight against the disease.” For more than a decade, researchers have been held back by difficulties in establishing in vitro and in vivo models of viral replication. “We’ve solved that problem,” says principal investigator Dr. Norman Kneteman, a professor of surgery at the University of Alberta. Essentially, the researchers have transplanted human liver cells into a genetically modified mouse; the transplanted cells rapidly divide and fill up much of the mouse liver. These “chimeric” mice can be infected with the hepatitis C virus, whereas previously only humans and chimpanzees have been susceptible to it. “Not only does the new mouse model give researchers the ability to test new therapies, it also allows researchers to study questions hitherto impossible to study, such as how the virus infects healthy cells and how the virus replicates,” said co-principal investigator Dr. Lorne Tyrrell. “This advance opens the floodgates on basic and applied research,” added Dr. Tyrrell, Dean of the U of A Faculty of Medicine and Dentistry. His previous work on the hepatitis B virus led to the development of a revolutionary new drug, Heptovir, proven to be an effective treatment for hepatitis B. Transmitted by direct blood contact, hepatitis C infection leads to chronic liver disease in 70 to 80 per cent of patients, with 30 per cent developing cirrhosis, and up to 10 per cent cancer of the liver.
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By Michael Robb Related link – internal The University of Alberta Faculty of Medicine and Dentistry Web site: http://www.med.ualberta.ca Related links – external The Nature Journal Web site: http://www.nature.com The Alberta Heritage Foundation for Medical Research Web site: http://www.ahfmr.ab.ca/ •
Abridged Public release
Marijuana-Like Substances Linked to Cirrhosis Complications Marijuana-like substances (endocannabinoids) intrinsic in animals and humans act at specific receptors on the blood vessel wall to produce vasodilation, the generalized blood vessel dilation seen in many patients with advanced liver cirrhosis, according to an article by George Kunos, M.D., Ph.D., and colleagues in the July 1 issue of Nature Medicine (Volume 7, Number 7; Endocannabinoids acting at vascular CB1 receptors mediate the vasodilated state in advanced liver cirrhosis). Dr. Kunos, who serves as Scientific Director, Division of Intramural Clinical and Biological Research, NIAAA, performed some of the research under a National Heart, Lung, and Blood Institute (NHLBI) grant while at his previous position on the faculty of the Department of Medicine at Virginia Commonwealth University.
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In advanced cirrhosis, vasodilation lowers blood pressure and increases blood flow to the liver and gut. Due to liver scarring, this increased blood flow meets with resistance, resulting in elevated portal pressure (portal hypertension) that can cause fluid to accumulate in the abdomen (a condition known as ascites) and dilated blood vessels to rupture-both life-threatening complications. Prevailing theory has held that an unknown endogenous vasodilator contributes to the maintenance of portal hypertension and the development of ascites. In the series of experiments reported July 1, Dr. Kunos and his colleagues demonstrate that the elusive mediator is most likely an endocannabinoid acting at vascular CB1 receptors. "Our findings raise the promising possibility that CB1 receptorblocking drugs can reverse the vasodilated state and reduce the risk of death in patients who are awaiting liver transplants," Dr. Kunos said. The research team led by Dr. Kunos found elevated levels of the endocannabinoid anandamide and low blood pressure in two distinct animal models of cirrhosis. Using the CB1 antagonist SR141716A, they succeeded in raising blood pressure and reducing portal pressure and blood flow to the liver. A separate experiment demonstrated that macrophages, a special type of white blood cell isolated from the blood of cirrhotic humans and rats, contained elevated levels of the endocannabinoid anandamide. When the researchers injected such macrophages into healthy animals, they decreased blood pressure-an effect that they also found could be prevented by pretreatment with SR141719A. In addition to elevated levels of anandamide, the researchers found elevated cellular levels of its receptor; in human cirrhotic liver samples, they identified a threefold increase in CB1 receptors in cells lining the blood vessel walls. "Taken together, these findings strongly implicate anandamide and vascular CB1 receptors in the vasodilated state in advanced cirrhosis and indicate a novel approach for its management," the authors conclude.
"New understandings of the mechanisms of cirrhosis recently have emerged, providing hope that soon we may have medications that can interrupt or reverse the disease process," said NIAAA Director Enoch Gordis, M.D. "The work by Dr. Kunos and his colleagues extends that hope even to treatments for end-stage cirrhosis." The National Institute on Alcohol Abuse and Alcoholism, a component of the National Institutes of Health, U.S. Department of Health and Human Services, conducts and supports approximately 90 percent of U.S. research on the causes, consequences, prevention and treatment of alcohol abuse, alcoholism, and alcohol problems and disseminates research findings to science, practitioner, policy making, and general audiences.
• Source National Institutes of Health National Institute on Alcohol Abuse and Alcoholism Press Release - Friday, June 29, 2001
Evidence for a cerebral effect of the hepatitis C virus. Forton DM, Allsop JM, Main J, Foster GR, Thomas HC, Taylor-Robinson SD. Patients with hepatitis C virus (HCV) infection frequently complain of symptoms akin to the chronic fatigue syndrome and score worse on health-related quality of life indices than matched controls. We address the hypothesis that HCV itself affects cerebral function. Using proton magneticresonance spectroscopy we have shown elevations in basal ganglia and white matter choline/ creatine ratios in patients with histologically-mild hepatitis C, compared with healthy volunteers and patients with hepatitis B. This elevation is unrelated to hepatic encephalopathy or a history of intravenous drug abuse, and suggests that a biological process underlies the extrahepatic symptoms in chronic HCV infection. •
Source Lancet 2001 Jul 7;358(9275):38-9
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DISCLOSURE By Leslie Wightman
Part 2 What about disclosing on insurance forms? You have a legal duty to disclose all relevant information about your health and any risk behaviours when filling out an insurance form. Disclosing that you are hepatitis C positive will not necessarily preclude you from taking out insurance however you may be required to pay higher annual premiums.
In South Australia protection is offered under the SA Equal Opportunity Act 1984 and the Disability Discrimination Act to people who feel they may have been treated differently or unfairly in the assessment of their superannuation. Under both of these Acts it is not unlawful for superannuation or insurance companies to discriminate against an individual if they base their decision/s on relevant statistical data. If a company cannot substantiate their decision/s with relevant data, an individual may be able to lodge a complaint using either Act. It is important to note that any information about a person applying for, or holding superannuation cover must be kept confidential by the employer and the superannuation provider. If you feel that you have been treated unfairly in regard to superannuation you can contact the Superannuation Complaints Tribunal and or the Equal Opportunity Commission of SA
It is important that you provide accurate information on the insurance form because failure to do so could result in the insurance company denying payment on a claim.
Travel Insurance There is an expectation that people will fully disclose their health status on such forms. Some people are choosing not to disclose on travel insurance forms as they believe there will be very limited risk that their hepatitis C will affect them whilst they are travelling.
Handy Hint
In the case that something did happen and it was revealed that you did have hepatitis C the company may not have to pay the claim.
Superannuation It is not unlawful to ask if a person has hepatitis or other infectious diseases, or whether they are recreational injecting drug users. These questions can be asked verbally or in written form. Superannuation providers make assessments for suitability of cover based on medical, statistical and actuarial basis. In this regard they must look at applications on a case-bycase basis. They can avoid acting in a discriminatory manner by asking questions that are directly relevant to assessing superannuation cover.
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Hepatitis C Community News
To carry rubber gloves in an inconspicuous manner put them into an old kinder surprise container, no one will know they are there. Sabine
Issue 18
Surveillance & Notification of Hepatitis C infection in South Australia In South Australia, statewide surveillance of hepatitis C infection is conducted by the Sexually Transmitted Diseases Services under an agreement with the Communicable Diseases Control Branch, Department of Human Services. Notification of hepatitis C infection began on 1st January, 1995. The prime purpose of surveillance is to direct statewide prevention and control activities, with the current priorities of determining the magnitude of the problem, dynamics of transmission and to monitor the level of hepatitis C testing in South Australia. Notification allows: • investigation of cases where exposure to hepatitis C virus (HCV) is unclear • detection, follow up and definition of the epidemiology of new infections • identification of unusual modes of transmission that may require specific public health interventions. Under the Public and Environmental Health Act, notification of hepatitis C infection is a legal requirement of medical practitioners. Notification forms are completed by doctors at the time of hepatitis C diagnosis and provide demographic, clinical and epidemiologic information.
The notification system is confidential and information cannot be disclosed to a third party without permission from the person. An example of disclosure is when the doctor reports that the person received a blood transfusion in the past. The person may be contacted to request permission to forward their details to the Red Cross Blood Service Hepatitis C Lookback program. There is no national register of people with HCV infection. Follow-up of cases People newly diagnosed with hepatitis C infection are interviewed in several circumstances. Some examples are: • if the person has become infected very recently • when the doctor is unable to provide the required information • the person has received a blood transfusion in the past. If the circumstances of infection appear unusual, the person may be contacted and told their case will be referred to the Communicable Diseases Investigation Unit. This happens several times a year. Statistics and reports For reports, cases of hepatitis C are grouped into categories (for example, males/females or age-groups) and the data are displayed in tables or graphs. Newly diagnosed cases of hepatitis C infection are those who have never had a positive test before, each year this accounts for about 1000 people, most of this group were actually infected with HCV many years ago. Those who have become infected in the last 12 months are designated incident cases and information from this group informs us about current transmission of hepatitis C virus. Data are published annually in the Epidemiologic Report of STD Services and on the internet site: • www.stdservices.on.net/publications
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Advances in Hepatitis C Abridged from an article by David Bernstein, MD
Treatment-Na誰ve -patients who have not previously been treated for hepatitis C with interferon.
Part 1 Although medical science has progressed considerably during the past 12 years in terms of its understanding of hepatitis C, many questions remain unanswered. At the recent Digestive Disease Week meeting, held in Atlanta, Georgia, May 20-23, 2001, several important papers were presented on these topical issues.
Immunology The mainstay of therapy for hepatitis C is interferon; however, interferon's mechanism of action remains incompletely defined. One theory is that interferon enhances the hepatitis C-specific T-helper-cell responses. Kamal and colleagues[1] presented data that compared the effect of hepatitis C-specific immune responses in patients treated with either pegylated interferon alfa-2a or the standard thrice-weekly administered interferon alfa-2a, for 48 weeks. Fourteen patients were enrolled in each arm and the groups were adequately controlled for genotype, hepatitis C virus (HCV) RNA titers, and age. There were no significant pretreatment differences between the mediators of inflammation in the patient groups Patients treated with pegylated interferon had a significant increase in the strength and frequency of hepatitis C-specific CD4+ responses over patients treated with standard interferon. This difference was noted as early as the fourth week of therapy. Pegylated interferon-treated patients had significantly higher levels of gammainterferon and significantly lower posttreatment interleukin (IL)-10 production in response to hepatitis C antigens compared with patients who received standard interferon. There was no significant difference in tumor necrosis factoralpha production between the 2 groups. Patients who achieved a sustained viral response had a strong, sustained hepatitis C-specific CD4+ response, with high gamma-interferon levels and low IL-10 production, regardless of the treatment received
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This study group concluded that treatment with pegylated interferon alfa-2a was associated with a more vigorous and multispecific immune response compared with standard interferon alfa-2a treatment. The efficacy of pegylated interferon alfa-2a in inducing higher rates of sustained virologic responses may be due to enhancement of hepatitis C-specific T-helper-1 responses.
Treatment-Naive Patient: Acute Hepatitis C Because of the rarity of this condition, the literature is quite sparse in this area. Jaeckel and colleagues[2] presented the results of a large, multicentre German trial, involving 43 patients with acute HCV infection. All patients were treated within 4 months of exposure with 5 million units of interferon alfa-2b daily for 4 weeks, followed by another 20 weeks of interferon alfa-2b given 3 times per week (6 months total). Forty patients with acute HCV infection who did not receive therapy, were used as a control group. The mean age of the patients in the treated and untreated groups was 36 and 40 years, respectively. Sixty-three percent of patients were infected with HCV-genotype 1, 28% with genotype 2, 8% with genotype 3, and 5% with genotype 4. At the end of the 24-week treatment period, 97% of treated patients were virologic responders, whereas only 30% of untreated patients spontaneously cleared virus. At the end of the 24-week follow-up period, the sustained virologic response rate in the treated group was 70%, whereas no patients in the untreated control group had spontaneous clearance of virus. No significant side effects were reported. The study authors concluded that early therapy of acute HCV infection with interferon alfa-2b is safe and effective and may prevent the development of chronic hepatitis C. Chone and co-workers[3] also reported on the efficacy of interferon alfa monotherapy in preventing development of chronic disease.) Without early treatment, acute HCV infection becomes chronic in the majority of patients. The role of combination therapy with interferon plus ribavirin or with pegylated interferon has not been evaluated in this patient group.
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Treatment-Naive Patient: Combination Pegylated Interferon Alfa-2a Plus Ribavirin Dr. Michael Fried,[4] Associate Professor of Medicine at the University of North Carolina, presented data on the use of pegylated interferon alfa-2a plus ribavirin in previously untreated patients with chronic hepatitis C. This study assessed the safety and efficacy of a 48-week course of therapy followed by a 24-week follow-up period in 3 treatment groups. Group 1 (n=453) was treated with pegylated interferon alfa-2a plus ribavirin; Group 2 (n=224) was treated with pegylated interferon alfa-2a plus placebo; and Group 3 (n=444) was treated with standard interferon alfa-2b thrice weekly plus ribavirin. Pegylated interferon alfa-2a was given as a single dose of 180 mcg/kg subcutaneously once weekly. Ribavirin was dosed as 1000 mg/day for patients weighing less than 75 kg and 1200 mg/day in those weighing 75 kg or more. The characteristics of the 3 patient groups are shown in Table 1. Table 1. Patient Characteristics Groups 1, 2 & 3 respectively. Intravenous-drug user - 42% 36% 40% Male - 71% 67% 73% White - 82% 83% 86% Cirrhosis - 15% 12% 12% Genotype - 1 65% 64% 64% HCV RNA (x106 copies/mL) - 6.1 5.9 6.0 Results of this trial showed: End-of-treatment viral response rates for patients treated in groups 1, 2 & 3 were 69%, 58%, and 52%, respectively. Sustained viral response for patients treated in groups 1, 2 & 3 were 56%, 30%, and 45%, respectively. Subgroup analysis in the pegylated interferon plus ribavirin group revealed the sustained viral response by genotype to be 46% for genotype 1 and 76% for genotypes 2 and 3. For standard interferon alfa-2b plus ribavirin, the sustained viral response rate by genotype was 37% for genotype 1 and 61% for genotypes 2 and 3 (see Table 2). Table 2. Response by Genotype Groups 1, 2 & 3 respectively. Genotype 1 - 46% 21% 37% Genotypes 2 and 3 - 76% 45% 61% The utility of obtaining an HCV RNA test at the twelfth week of therapy was also investigated. A negative HCV RNA test at 12 weeks was associated with a 65% positive predictive value for obtaining a sustained viral response.
A positive HCV RNA test at 12 weeks had a 97% negative predictive value for obtaining a sustained viral response. Of those patients who were HCV RNA-negative at the 12-week time point and who took more than 80% of their medication, the sustained viral response rate was 75%. This is interesting information to note and suggests the possibility of being able to predict response earlier in the course of therapy than the current 6-month timepoint commonly used in practice. If these data are confirmed in additional analyses and studies, they may lead to most costeffective use of the pegylated interferon therapies. Dr. Fried also presented safety data. Neutropenia was significantly more common among patients in the pegylated interferon alfa-2a treatment group than among those in the other 2 groups. The percentage of dose modifications required was similar in both arms including ribavirin in the regimen. There were, however, more withdrawals in the pegylated interferon plus ribavirin arm than in either of the other 2 treatment groups. The overall side effect profile for the 2 treatment (nonplacebo) groups was similar, although the pegylated interferon alfa-2a plus ribavirin-treated patients reported significantly fewer episodes of pyrexia, myalgia, rigor, and depression than did patients receiving standard interferon alfa-2b plus ribavirin. References 1.. Kamal SM, Peter T, Rasenack JW. PEG (40kDa) Interferon alfa-2a therapy enhances HCV specific CD4 + T helper 1 responses during and after therapy. Gastroenterology. 2001;120:A-55. [Abstract #288] 2.. Jaeckel E, Cornberg M, Santantonio T, et al. Treatment of acute hepatitis C infection with interferon alfa-2b monotherapy prevents development of chronic HCV infection. Gastroenterology. 2001;120:A-567. [Abstract #2883] 3.. Chone L, Bronowicki J-P, Barraud H, et al. Early treatment of acute hepatitis C infection with monotherapy interferon alfa is effective to prevent development of chronic hepatitis. Gastroenterology. 2001;120:A-380. [Abstract #1952] 4.. Fried MW, Shiffman ML, Reddy RK, et al. Pegylated (40 kDa) interferon alfa-2a in combination with ribavirin: efficacy and safety results from a phase III randomized, controlled, actively controlled, multicenter study. Gastroenterology. 2001;120:A-55. [Abstract #289]
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Adapted from the original article by David Bernstein MD posted on the HEPV-L Info list.
Part 2 Treatment naĂŻve - hemophilia Genotype 4 response Interferon mono-therapy Failures Recurrent hepatitis C following liver transplantation Alternative and new therapies
Conclusions
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DISCLOSURE OF HEPATITIS C STATUS TO CHILDREN. By Penny MountAdelaide Counselling Team, July 2001.
vary at different times. As many parents of teenage children already know, there may be times when the teenager may seem embarrassed by his or her parents and seem terribly conscious of how others outside the family may view them (luckily for parents, most teenagers grow out of this stage). Also, if you tell your child about the positive status of a family member, but then asked that child not to tell anyone else, that becomes a huge burden for the child, as well as sending mixed messages about how you respect confidences. As keeping a secret is very difficult, particularly for young children, you may have to consider your reaction, and plan the strategies you will adopt should your child have a secrecy slip-up.
If you decide not to tell … The decision to tell children of your’s or another family member’s status as a positive person will depend very much upon a variety of factors, and what is right for one family may not be so for another.
Some things to consider … Some of the things you may need to consider include the age of your child, your family’s belief systems around the benefits or costs of having secrets, and who would most benefit from disclosure. In addition, it may be worthwhile asking yourself what you expect from your child as a result of having shared this information, and most importantly, how would you react if these expectations are not met. Many parents believe that having secrets within the family is not a good thing, and they feel comfortable about openly discussing a range of issues. On the other hand, many parents also believe that children have only a short time being children, and to worry them with something they can do little to change is an unnecessary burden on a child. Both attitudes have advantages to a child. The key is to consider the individuality and uniqueness of your children, and your own ability to provide consistent messages about your family’s values. For example, you may feel quite confident about your place in the world, and feel you can deal with how others outside the family may perceive you. However, your child may not have the same confidence, and if he or she does, it may
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If you are considering not telling a child about your’s or another family member’s positive status, there are still some things to think about. First and foremost, how good are you at keeping your home life on an even keel? Secondly, what makes you so sure your child has absolutely no idea about the presence of HCV in your family? If someone having HCV has meant that there are changes in your family life, either through illness, fatigue, or increased irritability or anxiety, it is likely your children will be aware of this. Whispers and chopped-off conversations when a child is present, taking medication or trips to the doctor may be other behaviours that suddenly become introduced into family life. Children depend upon the adults in their life being able to provide nurturing, predictability and security, and that same dependency upon adults provides them with an inbuilt antenna that enables them to detect emotional changes in the home. If parents are distracted from the parenting tasks mentioned above (for example, due to illness in the family), the child may react to that changed behaviour or emotional tension in different ways. For example, young children may exhibit increased clingy behaviour, and all children may show anxiety, or demonstrate behavioural disturbances such as acting out, or disengaging from school in various ways (poorer results, truancy, inattention, fighting, etc). If you decide not to tell a child because you wish to spare them an adult burden, that is right and fair – but be sure that you are not “telling” in other ways.
Hepatitis C Community News
Issue 18
If you decide to tell … If you decide to tell your child, any discussion you have with your child must match the age and stage of development your child is at. Remember younger children have a short attention span and a limited understanding of the concepts of health and illness. They will probably not understand the role and function of the liver, and rational explanations concerning how a chronic illness occurs may not be the impression a young child is left with. For example, children up to about 8 years of age often engage in “magical thinking”, and may make up their own explanations for their own or a family member’s illness. As a result, the concept of “germs” and contagion may assume frightening dimensions, or young children may view chronic illness (either theirs or yours) as a form of punishment because they were naughty. Young children may need to be reassured that HCV is not caught from crockery or hugging people, or that the illness is not due to anything they may have done. In addition, young children fear abandonment acutely, and so you may have to reassure them that they will not be left isolated as a result of the illness. From your own experience with your children, you will know that each individual child may have different reactions to the same experiences. Your approach will depend upon your child’s temperament – some children react cautiously and at first reject new information or experiences, so a more gentle approach is required. Others take most things in their stride and will not be unduly affected. For those children who have reached the stage at which they are curious and ask questions, answers should be direct, clear and restricted to the level of understanding expected at the developmental stage of the child. Telling adolescent children also has its’ own difficulties. Many parents may not wish to tell an older child because it may raise questions, or the need for comment or explanation regarding a range of issues (e.g., sexual practices, or other risky or experimental behaviours) that parents are not feeling ready to discuss. However, for older children failure to talk openly may be more dangerous than knowing the truth. In addition, parents may be surprised at their adolescent child’s response. It may seem adolescents are uncaring, unaffected, or as though they haven’t heard. Remember that this is a time when older children may give the impression of
being mature and well-informed, but parents should make no assumptions about an adolescent’s ability to understand and assimilate information. Adolescents’ mental capacity has developed to the point that they can apply both logic and knowledge to a situation, but they may still have difficulty integrating these insights with the realities of everyday life. A number of the higher cognitive functions, such as being aware that things are not always as black or white as they may have first seemed, only develop in adulthood. For example, a teenage child may become judgemental, but not accept others’ assessment of their behaviour. Or they may say they know how HCV is transmitted, but that knowledge may not stop them from participating in high-risk behaviours themselves. Reasons for this include the fact that most adolescents are very wrapped up in their own uniqueness. As it is a time when they also experience growth in size and strength, which is the opposite of illness, they may conclude they are beyond the reach of disability or illness that other people may suffer. You may be in a position where you feel forced to tell your child about yours or another family member’s HCV because there has been a decision to undertake treatment, and you anticipate some changes at home as a result. Most children will accept a fairly straight-forward explanation of your expectations about the effects of treatment, providing they know in advance that as the adult, you expect that you can manage the situation, that they are not to blame for any mood changes, and that it will not go on forever. Plan to inject some humour into the situation (for example, young children may like to rate the person on treatment on a “grump-meter” each day), and plan to reward your child for their understanding and good behaviour.
Conclusion The decision to disclose the positive status of a family member to children is a personal choice of parents. In reaching that decision, you will identify and exercise many of the beliefs and values that are important in your family, and you will think about the strength and skills of each of your children. Whatever you decide, that process alone will be a beneficial one. Penny Mount can be contacted at the Adelaide Counselling Team on (08) 8363 2000
Hepatitis C Community News
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PEACE, a multicultural Program (Personal education and community empowerment) provided by COPE By Enaam Oudih Manager
The former Multicultural Communicable Diseases Program (MCDP) is now called PEACE – Personal Education and Community Empowerment: A multicultural Program. Our new name was created after wide consultation with culturally and linguistically diverse (CALD) communities – and we’re thrilled to have such a positive new image Our general aim is to create healthier individuals and healthier CALD communities. Specifically we aim to: !
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disseminate up to date, accurate and culturally appropriate information about HIV/ AIDS, Hepatitis C and related health issues inform communities about services available to them and improve their access to these services build valuable relationships.
PEACE was established when it was recognised that many people from culturally and linguistically diverse communities experienced difficulties in accessing mainstream services or programs relating to HIV/AIDS or Hepatitis C. Because of language and cultural differences in areas like religion, marriage, relationships, sexuality and health management, many of the mainstream services are seen as inappropriate or inaccessible. Talking about and dealing with communicable diseases like HIV/AIDS and Hepatitis C can be a difficult task in some communities. Sometimes these subjects have fairly strong taboos around them, and sometimes they can only be discussed with particular people.
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We have recognised over the years the need to be flexible and innovative in our approaches towards meeting community needs. We have therefore relied strongly on individual CALD communities for input into the ways in which education and support strategies can be best developed and implemented. PEACE has 23 trained educators working within their own communities providing HIV/AIDS and Hepatitis C information, education and support. Some of the community workers are involved in specific projects like the gay men’s program, injecting drug users’ (IDU) program and the new arrivals group. There are three key ways in which the community educators work: • They provide information and education to ethnic communities about HIV/AIDS and Hepatitis C • They provide support to people who are infected or affected by these diseases • They liaise to improve community links with agencies and service providers as well as other groups. The community educators are available to ethnic communities and/or individuals who would like information on HIV/AIDS or Hepatitis C. The services are free and confidential. Currently PEACE has trained educators from a variety of cultural backgrounds including: Malaysian, Chinese, Arabic, Greek, Vietnamese, Filipino, Persian, Peruvian, Indian, Italian, Sudanese, Somalian, Polish, Laotian, Thai, Cambodian and Chilean. In 1997 the PEACE program (formally the Multicultural Communicable Diseases Program) established a support network and information service for people interested in sharing experiences of culture, health and sexuality, which is called UNIDOS. The network is committed to providing support for gay, lesbian and bisexual people from CALD backgrounds, and their partners. The group organises regular events and discussion groups, and it provides up to date information on HIV/AIDS and Hepatitis C in various languages. The network provides a safe, informal, confidential environment where people can discuss important issues around culture, health, sexuality, coming
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Enaam and Lola…………. out, family, and the ways in which these relate to individuals from migrant communities. The group also provides one-on-one support for people who feel the need to discuss issues privately. Confidentiality is always guaranteed. PEACE works hard at building strong cooperative relationships with different communities because we recognise that the most effective and most appropriate strategies can only be devised at the ‘grass roots’. In conjunction with other relevant agencies we’ve developed a number of exciting initiatives that have proved effective and have helped increase community awareness and access to services. For example, we have: ! disseminated Hepatitis C and HIV information to thousands of CALD individuals using festivals and community networks. !
worked with the Cambodian community to establish and implement an HIV/AIDS awareness campaign using integrated community, theatre, media and education strategies.
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distributed Hepatitis C booklets to culturally diverse organisations, bilingual GPs and hospitals in metropolitan and regional areas.
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Assisted CALD organisation in implementing community initiatives programs such as the Hoi Sinh project, The multicultural Youth Drug Prevention Project and many other
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Worked with bilingual and professional interpreters to address language and cultural issues around Hepatitis C and HIV/AIDS
If you would like further information, or you would like someone to come and talk to you or members of your community about HIV/AIDS and/or Hepatitis C, please contact: Enaam Oudih, (Manager PEACE) Ph: 8223 3433, or mobile no’ 04188 24739
Hepatitis C Community News
Issue 18
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The Guide to Healthy Eating for People with Hepatitis C BOOK REVIEW This resource has been developed for people with hepatitis C by the Australian Hepatitis Council as part of it’s National Hepatitis C Education Project. The guide aims to help people with hepatitis C manage their diet and maintain good health. It contains information about hepatitis C, current eating guidelines, nutritional information and how to be a good critic of diet and nutritional information. The Guide to Healthy Eating for People with Hepatitis C provides general dietary advice and is not intended to replace the advice of a dietician or nutritionist (who can develop a program to meet individual needs). Many benefits can be gained from eating a healthy, balanced diet, although there is little research available on the effect that diet and nutrition have on liver function or the level of virus present in your blood. Having said all that – I think that this booklet can be very useful. There is excellent information on what food groups contain and where they are useful in the body. The section on “Healthy Alternatives: Putting healthy eating guidelines into practice” has some good tips on cutting down on saturated fats, (saturated fats which can contribute to feeling nauseous). There are also some good tips for relieving nausea in the section Relieving Gastrointestinal Symptoms. There is one section on dietary supplements that I may not totally agree with. While I understand that certain vitamins like A, D, E and K are fat soluble and can be stored in the liver, the guide suggests that many of these may cause damage to your liver. I firmly agree that vitamins from a well balanced diet are better utilised than vitamin supplements but if one doesn’t have the time to eat a well balanced diet, I believe that one can benefit from taking certain vitamins and supplements such as the B groups and perhaps St. Mary’s Thistle. The guide suggests that benefits from Silymarin or St.Mary’s Thistle have not been proven, but Silymarin has been used in European Hospitals for years to treat liver disease. I have found an article in The American Journal of Gastroenterology (Vol 93. No. 2 1998) which states that Silymarin has been used for centuries as a natural remedy for diseases of the liver and biliary tract. Silymarin and it’s active constituent silybin, have been reported to work as antioxidants scavenging free radicals and inhibiting lipid peroxidation. Studies also suggest that they protect against genomic injury, increase hepatocyte protein synthesis, decrease the activity of tumour promoters, stabilise mast cells, chelate iron, and slow calcium metabolism. In summary, silymarin has not been shown to have any adverse side effects and I believe can only help our situation with hepatitis C. Overall though, I think that the guide will be quite useful to people with hepatitis C and there is a section at the back on Further Reading that lists some useful books and websites. If anyone would like a copy of the guide to read, simply ring the Hepatitis C Council on 8362 8443 and we will send you a copy. Happy Eating.
Fred.
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Hepatitis C Community News
Issue 18
Information about Hepatitis C
for Italians If you would you like confidential information about hepatitis C in Italian
Contact Elena or Ornella at the Hepatitis C Council of SA
Each Tuesday 11.30 am - 1.30 pm
Phone: 8362 8443 1800 02 11 33 (Regional callers-free call)
Farewell Vanessa Behne left the Council in September to take up a position at Shine. Vanessa’s contribution to the Council over three and a half years was considerable, not only in her roles as educator, support group coordinator and administrator of the C Talk Program, but also in the many additional tasks she willingly took on – promoter, fundraiser, shopper, cook, bottlewasher, social organiser, Quiz Mistress to mention a few – The many challenges coming her way over this period have been met by Vanessa with energy, courage and integrity. We thank her for her presence amongst us and ponder that it seems only appropriate that our star is moving on to Shine.
Hepatitis C Community News
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Mail Bag
die and explained that the reason that I was telling her was that I didn’t want her to ever contract the virus from me by using something that may have some of my blood on it. I talked to her about the virus and the different modes of transmission and have always kept her informed about what it is and how it is affecting me. This has been really good as I have not had to keep this important issue from her, however if I had my time over I would certainly wait til she was a bit older.
Hi, I am writing in reply to Jean’s letter in the last Hep C Community News, wondering about disclosing to her daughter. I was diagnosed with Hep C about four years ago. I live alone with my daughter who is now 11 years of age. After the initial trauma of diagnosis, my thoughts and worries immediately went to my daughter. I had been positive when she was born and it took me all of about 5 minutes to talk myself into the fact that she was hep C positive as well. I used to worry constantly about whether she was infected and found myself looking at her and thinking that she was yellow so many times. It was terrible. I had known of my status for approximately one year when we had a conversation about shaving legs and stuff like that. I was talking to her about sharing razors and made the statement that when she was older to always make sure that she had her own razors, toothbrushes etc. Then it crossed my mind that there would be a time when she was perhaps here by herself and would want to use a razor, thinking that I wouldn’t know anyway, there would be a chance that she may use mine. I decided to tell her and did.
My daughter has always had people that she could talk to if she wished, however to my knowledge she hasn’t talked to anyone except me about how she feels about the hepatitis C. Also every time something happens to me with my health she immediately jumps to hepatitis C and what is it going to do to you Mum. Obviously the burden that she carries is fairly big. This troubles me. I have also spoken with her about disclosure, community fear, and discrimination and explained why it may be a good idea not to tell her friends at school. She hasn’t told anyone and where I am happy that this has happened, I am also aware that I have asked her to keep a secret that she may not be comfortable in keeping. This also has troubled me at times, as it doesn’t seem altogether fair. We eventually got her tested, more to allay my own fears than hers. Thankfully she does not have the virus. I would just like to add here that while we were waiting for the test results to come back that I went through probably one of the most difficult times in my life worrying about what a positive diagnosis would mean for her and how I would cope with that knowledge. While writing this letter I have been feeling a fair amount of discomfort and so thought that I would tell her what I was doing and ask if there was anything that she would like to say. This is what she has said;
The first thing she wanted to know was if I was going to die. I hadn’t expected that (probably because I hadn’t thought it through properly) and found the experience quite harrowing. I assured her that I wasn’t going to
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When you used to get tired and not feel well I used to think that you were going to die and that made me feel upset. I didn’t talk to anyone about that because I thought that they might think I was being silly. I don’t worry about you
Hepatitis C Community News
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now so much because you have made sure that I know about the virus and that helps me to deal with it, also you have said that you aren’t sick at the moment and if you do get sick, you might be able to go on treatment.
Adelaide Information Evenings 10 th October
Keeping the secret doesn’t really worry me too much as it isn’t other people’s business anyway. It would be nice though if one of my friends had a mum with hep C as well, so that when things did get to me I would have someone to talk to that wasn’t an adult and that would understand how it feels sometimes because then they would be the same as me. I am glad that you told me because otherwise there would have not been an explanation as to why you get sick four or five times a year and I only get sick once and also when you got really tired I would have just thought that you were being lazy. I know that I can talk to people at the hepatitis C Council if I want to and that is good. Having a mum with hep C isn’t so bad. She isn’t any different than any other mum and I love her anyway. Love is what really matters.
October Date & Venue Change
Rooms 1 & 2 10 Pitt St Adelaide
6.30 pm 10th October
7th November
Women’s Coffee and Information Morning This morning is specifically for women with hepatitis C. Women who are hepatitis C positive are invited to a coffee morning at the Council on the second Monday of each month. 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.
Anonymous
Do you have a story you would like to share? We are always looking for personal stories and people’s experiences to publish in our newsletter. We would particularly like to hear from people on, or who have completed treatment.
If you would like more information on coffee mornings, guest speaker topics or women and hepatitis C, please contact the Council.
10.30 am - 12.30 pm
8th October
12th November
Information and Support Groups are held at the Hepatitis C Council 4 The Parade, Norwood
Please state clearly if your letter is private or for publication and if you want your name to be withheld.
October Date & Venue Change See Above
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 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
Hepatitis C Community News
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