HEP C COMMUNITY NEWS Winter 2001
Issue 17
Tell Us Your Treatment Tribulations At this time in South Australia, we are in the early days of the Hep C combination treatment story and already the infrastructure is labouring under even small demand (approximately 70 people are currently undergoing combination therapy following the May 1 changes). One public hospital is already stemming the flow of demand due to concerns about their capacity to offer appropriate support for people before, during and after treatment as no funding has been made available for the critical role of clinical nurse coordinators. It seems waiting lists are set to rise. At the Council we would like to hear from anyone who is having difficulty in accessing treatment or feel that they are not being adequately supported, as the situation will not improve unless we can gather ‘your stories’ about the treatment experience in South Australia and present this information to those who make the funding decisions.
Hepatitis C Community News
Issue 17
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IN THIS ISSUE Treatment Summit
4-5
News in Brief
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Hepatitis C Council SA Inc 4 The Parade Norwood 5067
8 - 10
Considering Treatment Complementary Therapies Book Review
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Disclosure
12 - 15
Volunteering at the Council
16 - 17
Handy Hints
Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55 (GST inclusive)
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Mail Bag
17 - 18
Information / Support Group Guide for 2001
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Resource & Additional Service Guide
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You can request a zero-cost membership if you are experiencing financial difficulties. Donations do not attract GST
Postal Address 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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Hepatitis C Community News
Issue 17
NINTH NATIONAL SYMPOSIUM
September 3rd- 4th
on
HEPATITIS B C and
Saturday 17th November 2001 St Vincent’s Hospital Melbourne Session 1 - Hepatitis C Session 2 - Hepatitis B Session 3 - Breakout Session 4 - Discrimination and Access
Registration Fee (includes morning/afternoon tea, lunch and course notes)
Before 26/10/01 After 26/10/01
Skills Training for Peer Educators
$275 (includes GST) $330 (includes GST)
Meeting Administrator Ms Eleanor Belôt Department of Gastroenterology St Vincent’s Hospital Melbourne 41 Victoria Parade Fitzroy, Victoria 3065 Phone: (03) 92883580, Fax: (03) 92883590 E-mail: belote@svhm.org.au
The Gear’d Up project is organizing another free 3-day training for peer educators and peer support workers with an injecting drug background. This nationally accredited training (Train Small Groups BSZ401A) will teach the skills to plan, deliver and review education and training delivery to small groups and is generously supplied by COPE. For expressions of interest and further info please contact: Craig at Gear’d Up on 8234 9180.
Quiz 1. What are the most common genotypes in Australia? [a] 1 & 4 [b] 1 & 3 [c] 2 & 3 2. When did testing for hepatitis C in our blood supply begin in Australia? [a] February 1991 [b] March 1991 [c] February 1990 3. Sharing razors is safe as long as I wash them first. [a] True [b] False 4. What two genotypes have the highest sustained response rate to combination therapy? [a] genotypes 1 & 2 [b] genotypes 1 & 4 [c] genotypes 2 & 3 5. How many people in SA were diagnosed with Hepatitis C last year (2000)? [a] 1066 [b] 166 [c] 866
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Hep C Treatment Summit Afterthoughts from Adelaide The Australian Hepatitis Council (AHC) held a Treatment Summit in Adelaide in early June. This Summit was very timely as the eligibility criteria (S100) to combination therapy for people with hepatitis C changed on May 1 to allow much broader access to this significantly improved treatment. The Summit brought together representatives from all State and territory Hepatitis C Councils, national representatives from the Haemophilia Foundation, the Australian IV League (peak body for user groups) as well as representatives from the medical professions engaged in hepatitis C treatment issues. This opportunity to meet with others working in various places and in various contexts provided an excellent national overview and stimulated much thought. In this article I am presenting my thoughts: The aim of the Summit was to improve access to treatment for people living with hepatitis C. Broadening of the eligibility criteria for access to the combination therapy drugs is only one part of the jigsaw, albeit an important part. The other pieces of the treatment access puzzle focus on education, attitudes and resources. Education is a key component of access to treatment. Education about the improved efficacy of combination therapy; the S100 eligibility criteria; the importance of genotype as a predictor of treatment success; the greater knowledge we now have about the natural history of hepatitis C which offers critical information to target those individuals who are more likely to progress to serious liver disease; and the growing understanding available of the psycho-social impacts of hepatitis C infection for the
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hepatitis C affected community. This knowledge needs to be spread in the medical world amongst specialists, nurses and for appropriate referrals to liver clinics, it is crucial that General Practitioners have education about these issues. Equally important to the spread of this knowledge in the medical arena, is that this education also occurs amongst people who are living with hepatitis C – an informed choice for the individual is the optimal choice. Attitudes from others towards people living with hepatitis C are influenced by layers of fear (of contracting a communicable disease that is not well understood by the general community) and morality (about injecting drug use). An environment of fear and moral judgement feeds secrecy and this is far from the ideal environment for the spread of education – and thus a barrier to treatment access. In these times of fierce competition for the health dollar, the lack of a strong political voice from the ‘invisible’ community has meant that the infrastructure to offer access to treatment to a diverse, growing population has not been developed. According to the epidemiologist at the Summit who looks at the size of the treatment story, we need to be looking at treating 10,000 – 15,000 people Australia wide over the next 3 to 4 years. Assuming my maths is correct, this would equate to around 800 people in South Australia. In South Australia liver clinics are not adequately resourced to cope with these numbers nor to provide the optimal support for people before, during and after treatment.
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Greg Dore presenting at Treatments Summit, 4th–5th June in Adelaide.
There is no dedicated funding for psychiatric support (treatment pre-assessment and for depression experienced by some as a side effect of interferon) nor for Clinical Nurse Coordinators, who can play a vital role in education and support for people undergoing treatment. As specialist medical services are concentrated in Adelaide, distance is a huge barrier to treatment access for people living in rural communities. Members of the hepatitis C affected community who are also from culturally and linguistically diverse backgrounds or from indigenous communities generally have difficulties accessing health services. The need for interpreters, culturally appropriate written material and an accessible environment are additional barriers to treatment for these people. Other groups who have special needs within the hepatitis C affected community are people who are currently injecting and those who are in prison.
When piecing together the parts of the jigsaw to form the treatment picture in South Australia, we will need to decide on an approach that will provide workable answers to overcome the barriers for all people living with hepatitis C who ‘fit’ the S100 criteria and choose this treatment option. If we agree with the view stated at the Summit that combination therapy is not a sophisticated treatment for the specialists as long as the side effects of the treatment can be managed, and considering the size of the treatment story and the diversity of need and circumstances amongst the affected community, then a ‘shared care’ approach where interested GPs in various community locations develop treatment protocols with specialists and liver clinics could provide a workable answer to many barriers – not least the sharing of the financial burden between the State funded hospitals and the Commonwealth Medicare system. Kerry Paterson
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News in Brief Tattoos and HCV in the US Tattooing a Major Route of Hepatitis C Infection DALLAS - April 4, 2001 - Getting a tattoo could be a key infection route for hepatitis C, according to a study by a University of Texas South-western Medical Centre at Dallas. Researcher Dr. Robert Haley, chief of epidemiology, writes in the March issue of the journal Medicine that tattooing has been previously overlooked as a widespread source of hepatitis C. The study found that people who had received a tattoo in a commercial tattoo parlour were nine times more likely to be infected with hepatitis C than people who did not have a tattoo. Participants in the study were patients of an orthopaedic spinal clinic, a setting that provided a large volume of patients seeing a physician for reasons unrelated to blood-borne infection. Of the 626 patients studied, 113, or 18 percent, had a tattoo. Of those with a tattoo, 22 percent were infected with hepatitis C. Of the 52 patients who had acquired their tattoos in commercial tattoo parlours, 33 percent had hepatitis C. In contrast, only 3.5 percent of patients with no tattoos had hepatitis C. Few of the tattoo-associated infections could be traced to injection-drug use, transfusions or other known routes of exposure. Study participants were asked about other possible hepatitis C risk factors, including injection drug use, prior blood transfusions, sexual promiscuity, acupuncture, electrolysis, occupation, ethnic factors, obesity and others. The risk of hepatitis C infection was also higher among patients with a history of injection-drug use, hospital custodial workers. "Most importantly, we found that commercially acquired tattoos accounted for more than twice as many hepatitis C infections as injection-drug use," Haley said. "This means that it may have been the largest single contributor to the nationwide epidemic of this form of hepatitis." Hepatitis C can be passed through tattooing by reuse of tattooing needles or dye, inadequate sterilization of tattooing needles between customers, or breaks in sterile technique such as the artist pricking the back of his or her hand to test the
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needle's sharpness. Few states have hygienic regulations to ensure safe tattooing practices in commercial tattoo parlours, and even fewer monitor and enforce standards. Patients for the study were interviewed and tested in 1991 and 1992. "The results of the study were not published then because other epidemiological studies at the time were expected to address the issue, but they did not," said Fischer. "This was the last study done before widespread hepatitis C testing began, when a largely unbiased study could still be done." Tattooing has been shown to transmit other infectious diseases, including hepatitis B, syphilis, leprosy and tuberculosis. Small outbreaks of hepatitis have been identified in customers visiting certain commercial tattoo parlours on the same day. Fine-art tattooing has become a common practice, particularly among teen-agers and young adults. Sociological studies of tattoo recipients, however, have shown that few recipients compare tattoo parlours or watch a tattooing procedure before getting one, and few consider tattooing a future health risk. adapted from the HepC Connection on line newsletter May-June 20001 web site: http://www.hepc-connection.org/
Weight Reduction in the Management of Hepatitis C The results of a recent small study, reported out of Australia, suggests that weight reduction may reduce fat around the liver (steatosis), lower ALT, and improve fibrosis, triglycerides and serum insulin. Steatosis is common in patients with chronic hepatitis C and is associated with increased fibrosis. Twelve individuals (9 males and 3 females, ages 30-52) underwent the study. Patients received a calorie-controlled diet, increased their daily exercise during a 12-week intervention period and were seen weekly by a nutritionist. The goal was a 0.5 kg (1.1 lb) weight loss per week.
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At the end of the 12-week period the average weight loss was 7.6 kg (approx. 17 lbs). All patients reported subjective increases in energy and well-being. Eight of 12 patients had a progressive reduction in ALT (average 120 to 85) that paralleled their weight loss. Seven patients had liver biopsies following the 12-week study and all decreased their amount of steatosis. Fibrosis was reduced in 3 of 7 patients. Weight loss also reduced necroinflammatory (cell death) activity, urinary F2-isoprostanes, fasting serum insulin (blood sugar regulator) and triglycerides (fatty acids). These results demonstrate that weight reduction in patients with chronic hepatitis C can reduce several factors which may lead to more severe disease. The results also support the need for larger studies to assess the place of weight loss in the management of chronic hepatitis C. Study Authors: Andrew D Clouston, Julie R Jonsson, Univ. of Queensland, Brisbane; Ingrid Hickman, Claudia Shorthouse, Princess Alexandra Hospital, Brisbane; Trevor Mori, Univ. of Western Australia, Perth; John Prins, Princess Alexandra Hospital, Brisbane; Graeme Macdonald, Elizabeth E Powell, Univ. of Queensland, Brisbane. adapted from the HepC Connection on line newsletter March-April 20001 web site: http://www.hepc-connection.org/
Like other viruses, HCV "borrows" the proteinmaking machinery of the cells it infects because it is unable to churn out viral proteins on its own. In a recent issue of the journal Science, Doudna and colleagues described how they gathered extremely high-resolution images of the interaction of HCV with the machinery of the host cell in order to study how HCV forces the host cell to make proteins. "We were trying to see how hepatitis C and other viruses initiate synthesis of proteins," Doudna said in a statement, noting that this is the first time this process like has been visualized. "A long-term goal of this work is to understand the molecular basis for protein synthesis in hepatitis," according to Doudna. "It's already clear that hepatitis C and a number of other viruses utilize a method for protein synthesis that's different from the mechanism used in the host cell. That already makes it a target for drugs that could serve as an effective treatment for HCV." The researchers note that in addition to providing therapeutic targets, a deeper understanding of the changes that occur in these types of events may offer insights into features common to protein synthesis in general. "This is only the first step in getting information on how HCV interacts with the host cell," Frank said. "The findings may pave the way toward drug design-drugs that could bind to specific sites (on the virus). This could be a promising way to fight the disease." SOURCE: 1961.
2001;
291:1959-
abridged from the HepC Connection on line newsletter May-June 20001 web site: http://www.hepc-connection.org/
Study Illuminates How Hepatitis C Infects Cells By Emma Patten-Hitt, PhD NEW YORK Apr 10 (Reuters Health) - Researchers have gained new insights into the way in which hepatitis C virus (HCV) takes over the machinery of a host cell, which may lead to the development of drugs that can eliminate the infection without harming normal cells. Currently no cure exists for hepatitis C, which is why finding new targets is so important, according to Dr. Jennifer Doudna of Yale University, New Haven, Connecticut, lead author of the study.
Science
The HepC Connection—Hepatitis C Network and Support system provides information kits, an on line newsletter and links to related sites.
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Considering hepatitis C treatment
Objectives of treatment Although the principle aim of hepatitis C treatment is to clear the virus from a person's body, linked to this are three broad objectives: ♌
to prevent progression to advanced liver disease (liver failure and liver cancer)
♌
to improve quality of life
♌
to reduce the risk of transmission of hepatitis C.
By Greg Dore
The considerable improvements in response rates for interferon and ribavirin combination therapy have changed the treatment landscape for people with chronic hepatitis C. From a situation a few years ago where a relatively small minority of people could expect a sustained response (around 15-20%) with interferon mono-therapy, we are approaching a situation where close to half of those commencing therapy can expect to reach a sustained response. Although combination interferon and ribavirin therapy has been available through a compassionate access scheme in recent years, this scheme has been largely limited to people attending specialist clinics in large urbanbased hospitals. The recent approval of subsidised combination therapy under the Commonwealth Government S100 scheme for certain patients who have not had prior interferon therapy will undoubtedly broaden access to combination therapy. In the previous era of interferon monotherapy, the vast majority of people with hepatitis C were either unwilling or unable to access therapy; only about 5,000 of an estimated 150,000 people in Australia with chronic hepatitis C were treated. The new era of combination therapy should see more people with hepatitis C enquiring about treatment and more clinicians willing to strongly recommend it.
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The strength of these objectives will differ from person to person and may dictate both the necessity and timing of antiviral therapy. For example, a woman with hepatitis C may want to attempt viral clearance prior to childbearing to eliminate the risk of mother to child transmission.
Considerations for therapy There are several considerations that need to be discussed, often over several clinic visits, before a decision is made to embark on antiviral therapy:
The prognosis of hepatitis C A major feature of hepatitis C is the highly variable nature of liver disease progression; some people progress relatively rapidly, while most will never develop advanced liver disease complications. This variability, and the presence of factors known to influence liver disease progression, emphasise the need to individualise discussion of prognosis (someone's long term outcome). Factors that should be taken into consideration in this discussion are the age at initial hepatitis C infection, duration of infection (if able to be estimated), alcohol intake (past and present) and the level of liver enzymes as measured through a liver function test.
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Although these prognostic factors are important, often a liver biopsy is the only method of assessing longer-term prognosis. People with hepatitis C who should consider a liver biopsy are those with abnormal liver enzymes who have an estimated duration of infection longer than 10 years (or unknown duration), and those with shorter duration of infection and significant cofactors (eg. previous heavy alcohol intake, age at infection over 40 years, coinfection with HIV or chronic hepatitis B). Most clinicians would strongly recommend antiviral therapy if the liver biopsy shows levels of fibrosis greater than minimal. In cases where there is minimal fibrosis, other factors such as the degree of liver inflammation, quality of life, and the hepatitis C genotype should be considered in determining the need for current antiviral therapy. A liver biopsy should be used to help assess prognosis, not simply as a baseline test prior to commencement of antiviral therapy.
Efficacy of available therapy Interferon and ribavirin combination therapy is now considered "standard of care" for treatment of hepatitis C and is provided under certain conditions as both first and second option treatment under the Pharmaceutical Benefits S100 scheme. In large clinical trials, approximately 40% of people treated with interferon and ribavirin reached a sustained response (normal liver enzymes and no evidence of hepatitis C in the blood-stream after six months). For the vast majority of people with a sustained response, this means prevention of further liver damage (and reversal in many), no risk of hepatitis C transmission, and the word "cure" as a meaningful concept. Relapse of hepatitis C more than six months after stopping treatment appears to be uncommon, however, it must be stressed that continued exposure to hepatitis C (eg. through sharing of injecting equipment) may result in re-infection and resumed liver damage.
The most important predictor of response to interferon and ribavirin therapy is the hepatitis C genotype or strain. People with genotype 1 or 4 have a 20-25% chance of a sustained response, while those with genotype 2 or 3 have a 70-75% chance of a sustained response. Both hepatitis C genotype and viral load testing are available free under the Medicare rebate system for people considering treatment. A person with early liver damage with genotype 1 or 4 may be advised to await results of trials of new treatments such as pegylated interferon and ribavirin combination therapy. All people with hepatitis C considering treatment should have a genotype test performed to inform them of their likelihood of response.
Possible improvements in therapy Can a further advance in therapy for people with hepatitis C be expected over the next 2-3 years? Different formulations of interferon, such as pegylated interferon, and different interferon-based treatment strategies, such as high dose and/or more regular dosing induction periods (eg. daily for the first month), may improve response for some people. The trailing of these new interferon formulations and strategies, especially in combination with ribavirin, are particularly important for people with unfavourable HCV strains (genotypes 1 & 4) and people with cirrhosis. These two groups enjoy relatively poor response to current standard therapy. A person with genotype 1 who has minimal to moderate liver fibrosis might be advised to await the results of pegylated interferon and ribavirin therapy trials due in the next 12 months or so.
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Further potential advances in treatment, with use of other classes of drugs which specifically target HCV replication sites, such as protease, helicase, and polymerase inhibitors may be more than five years away.
Quality of life The decision regarding therapy for a person experiencing chronic fatigue, muscle and joint aches and pains may differ greatly from the person whose quality of life is not affected by the physical symptoms of hepatitis C. A person with minimal physical symptoms may, however, experience considerable psychological morbidity (illness) related to hepatitis C. For some people, therapy may provide a means to "close a chapter" on aspects of their past life, and move into the future free of stigmatisation related to both a history of injecting drug use and hepatitis C itself, and free of the fear of disease progression.
Psycho-social considerations As with symptom-based considerations, the current psycho-social situation of a person with hepatitis C will have an influence on a decision whether to commence antiviral therapy. Some people with hepatitis C may have several reasons why antiviral therapy would be problematic in their current situation. Psycho-social factors which may be important include the effects therapy may have on work capacity, availability of social supports, the "energy" required to commit to a long course of therapy, and simply whether the "time is right". Current drug use may be an important factor for many people with hepatitis C. Some people will be on methadone maintenance therapy, and others will still be injecting. Although continuing injecting drug use should not per se be considered an exclusion for anti-
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viral therapy, for many people hepatitis C may be a relatively low priority in their current personal setting that includes a range of other health and social issues. Many people, however, continue occasional injecting drug use that does not overly interfere with their daily life. If for someone in this situation the risk of progression to advanced liver disease is high (for example, if they already have severe fibrosis or cirrhosis), then therapy should be considered. Counselling regarding the risk of ongoing injecting drug use should be given, in particular the risk of re-infection in people who achieve a sustained response to therapy, but continue to share injecting equipment. Since the largest proportion of people with hepatitis C are in the 20-40 year age group, for many people, family considerations will be an important factor in their decision to start on antiviral therapy. The requirement for contraception during and for at least six months following interferon and ribavirin combination therapy (due to the ribavirin's potential to cause birth defects) needs to be clearly discussed. Some people may prefer to delay therapy, if possible, until after having children, while others may prefer to attempt to clear hepatitis C prior to conception. These decisions may also vary according to gender, with women taking into consideration the approximately 6% risk of mother to child transmission of hepatitis C.
Conclusion The most important feature of making decision regarding hepatitis C treatment to be well informed. Often, several visits an experienced clinician will be required gather this information.
Dr Greg Dore is an Infectious Diseases Physician at St Vincent's Hospital Hepatitis Clinic, Darlinghurst, NSW.
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a is to to
complementary and alternative therapies for hepatitis C
There is a new booklet on Complementary and Alternative Therapies for hepatitis C. It has been published by the Australian Hepatitis Council and is quite worth a look for those interested in choosing a therapy for managing their symptoms. The booklet provides information on the following: What do the terms complementary and alternative mean? Why choose complementary and alternative therapies? Is there research on complementary and alternative therapies? What do I need to consider before choosing a therapy? How do I choose a practitioner? A contact list and a reading list for further information is included at the back of the booklet. There is also a list at the back of the booklet on a selection of herbs used to treat hepatitis C which could be quite useful. The Australian Hepatitis Council does not endorse one therapeutic approach over another. All treatments (conventional, complementary and alternative) have potential risks and benefits. We recommend that if you are consulting a doctor or liver specialist that you inform them of the treatments you are choosing. Interested organizations or individuals can request a copy or copies by ringing the Hepatitis C Council of SA on 8362 8443. Fred
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DISCLOSURE By Leslie Wightman
Part 1 Telling Others-What’s the Story Do I have to tell anyone that I am Hep C positive? Are there some situations where I may benefit from disclosing? What about telling my partner, lover, child? When people are first diagnosed with Hepatitis C they are confronted with a myriad of questions adding to the confusion and anxiety of this period. There are no magic answers to the question of who you should and should not tell. Erring on the side of caution is probably very wise, at least until you feel confident about the level of information you have about hepatitis C, feel comfortable with your emotional response to having the virus and until you have a clear appreciation of the complexities of disclosure. At the Hepatitis C Council of SA we have heard many 'to disclose or not to disclose' stories. Some wished that they hadn’t in situations where they received unexpected consequences as a result of their disclosure. Several people have described how they eventually had to leave their job as a result of others' negative and insensitive reactions. Parents have spoken about how their entire families became isolated as a result of talking to a 'friend' about their hepatitis C status. There are also many stories from those who, thinking they were doing the right thing, disclosed to their health professional and suffered significant negative reactions. In contrast, we have also heard a number of stories where individuals have directly benefited from being open about their hepatitis C status with lovers, partners, friends, relatives and health professionals. These individuals found that sharing their stories allowed these relationships to deepen and to have their struggles acknowledged. They have described the need to share the realities of their lives with significant others. There are many factors to consider around the decision 'to disclose or not to disclose'. We hope the following information will help you in your own situations.
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Should I tell people I have Hepatitis C? At present there is a considerable amount of misinformation and fear in our community about hepatitis C. People generally know very little about how it is transmitted, how it affects people and whether it is ‘curable’. Hepatitis C is heavily stigmatised because of its close association with injecting drug use, a perception that it is easily transmitted and people’s fear of catching it. The following checklist may assist you to ensure that you are in fact acting in your own best interest in telling others about your hepatitis C status: 1. Are you clear about why you feel the need to disclose. Are feelings of fear, guilt, shame or a sense of moral or legal obligation impacting on your decision? 2. Are you aware of your legal obligations and rights in relation to disclosure? 3. Do you feel that you will benefit in some way by telling a particular person you are hepatitis C positive? 4. Do you feel that you can trust the person you plan to talk to, that they will respect your rights in relation to confidentiality and privacy? 5. What kind of response do you want from the person you plan to tell. What would it mean for you if they react badly, or in a manner that you didn’t expect?
Work related Disclosure Looking for Work Many people who have hepatitis C approach job seeking with some caution. They're afraid that at some stage in the pre-employment process they will be asked a question which may force them to disclose their health status to prospective employers. People fear being asked such questions on pre-employment forms, in the process of having a medical or in a face to face interview. Most people are not obliged to disclose their hepatitis C status to their future employer. Health care workers whose work will involve them in ‘Exposure Prone Procedures” should seek specialised advice and support. (see below) Employers in SA are strongly advised by the SA Equal Opportunity Commission to ask only questions that will show if an applicant matches the requirement of the job. This means that employers should frame their questions in a way that will assist them in selecting the most qualified individual for the job. Unfortunately we know that individuals are being asked inappropriate questions that have no relevance to the position being applied for. So, whilst you are NOT obliged to provide information about hepatitis C as part of the pre-employment process you need to be aware of the potential impact of declining to provide this this to a prospective employer who is seeking this information anyway.
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The South Australia Equal Opportunity Act 1984 covers the following: If a person is denied a job because: • they are asked inappropriate questions, and • these questions relate to unlawful discrimination then s/he may wish to lodge a complaint with the Equal Opportunity Commission of SA using the South Australian Equal Opportunity Act 1984 or with the (Federal) Human Rights and Equal Opportunity Commission using the Disability Discrimination Act. If you feel that you have been discriminated against, make some notes immediately about what was said and what happened. This will help you to prepare a formal complaint. Australian Defence Forces do have an exemption under the Disability Discrimination Act and can lawfully discriminate against individuals on the basis of existing conditions such as HIV or Hepatitis C. When asked a specific question on a preemployment form about having hepatitis, a liver disease or blood borne virus you may want to consider the following: 1. Many people are making a decision to respond 'No' to this question. They are hoping that it will never become an issue and that nobody need know the difference. Legally this could later be found to be a false or misleading statement and could have legal implications. 2. Some people are making the decision to leave such a question blank in the hope that this is not noticed. By doing this they have avoided the possibility of legal consequences from a false statement but if it is noticed they may be asked to respond again. If this occurs, they may then ask what is the relevance of the question to the position being applied for. 3. Another option is to write 'Yes'. If you write 'Yes' you should be aware that discrimination may occur on the basis of your answer. If you believe that you are not offered the position specifically because of your hepatitis C status you may be able to lodge a complaint under the South Australian Equal Opportunity Act 1984 or Federal Disability Discrimination Act. Individuals are not required to disclose their hepatitis C status to Centrelink staff and their local Job Network agency. Some individuals may choose to disclose in the process of applying for specific financial support payments such as the Sickness Allowance, Disability Support Pension, Carer’s Payment and Carer’s Allowance and the Newstart Allowance. In these instances it will become necessary to truthfully state the grounds for making the application. Complaints concerning discrimination and Commonwealth programs should be directed to the Human Rights and Equal Opportunity Commission.
What about telling your employer when you are in a job? Health care workers performing Exposure Prone Procedures may have a legal obligation to disclose to their employer. (See HCW section below) No other worker is legally required to disclose their status to their employer once they are in job. People who feel ill as a result of their hepatitis C or hepatitis C related treatment should be able to access the usual sick leave and long service leave entitlements without having their status disclosed. Beyond this many workers should be able to negotiate more flexible options that will enable them to continue working. Hepatitis C is classified as a physical impairment (ie a disability) under the SA Equal Opportunity Act 1984 and Disability Discrimination Act and employers do have a legal responsibility to make reasonable work place modifications to support workers with an impairment. Some of these options may include: Changing the person's position from full-time • to part-time Adopting flexitime arrangement • Allowing work from home where appropriate • Reducing the amount of physical activity • required within the job
Telling Work Colleagues Your decision to disclose or not to disclose to workmates will depend on the nature of your relationship with these individuals. It, however, may be wise to think carefully before you talk to colleagues, as there may be some unexpected consequences. It may be something you choose to do after you have worked with these people for a period of time and have a better sense of whom you can trust. The work place is often a place where significant friendships are formed and valuable support can be gained through these friendships. Discrimination and harassment by work mates may be an equal opportunity issue. Employers have a responsibility to provide employees with discrimination-free work environments.
Health Care Workers and Disclosure All health care workers have a responsibility to follow standard infection control guidelines and to continually review their work practices to minimise the risk of blood to blood contact. Some health care workers are involved in “exposure prone procedures”. These are procedures where there is a potential for contact between the skin of the health care worker and sharp surgical instruments in body cavities or poorly visualised or confined sites in the body (including the mouth) of the person on whom the procedure is being carried out. Continued next page
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Health care workers who are involved in such procedures are usually dentists, some midwives and some surgeons. These workers have an ethical responsibility to know their current blood-borne virus status. If such a worker finds they are hepatitis C positive they have an ethical and probably a legal duty to seek specialised support and advice. Individuals in this situation are advised to seek further information from their physician, professional body and from the HIV, Hepatitis C and Related Programs Unit of the Department of Human Services for details outlined under the Infected Health Care Worker Guidelines. (These guidelines are also available through the Hepatitis C Council of SA). They can also seek confidential advice from the Hepatitis C Council. Other health care workers not engaged in Exposure Prone Procedures are currently not ethically or legally required to disclose their hepatitis C status to anyone. These individuals are advised to seek information from their professional registration board if they have any concerns regarding their situation. This information could be sought anonymously. However, there is legislation currently being considered by the SA Parliament to require all dentists, doctors and medical students who are hepatitis C positive to disclose to their Registration Board. It is advisable that individuals do not make false or misleading statements regarding their hepatitis C status on pre-employment forms. It is probably best to leave it blank then explore the reason disclosure is being sought and its relevance to the job. This can provide evidence if you subsequently feel you have been discriminated against. Health care workers with hepatitis C do not have to inform workplace colleagues of their status.
Do I have to inform health professionals? You are not legally obliged to disclose to health professionals. If you are asked to fill in a form which asks specific questions regarding blood borne viruses or a liver condition you may choose to leave it blank or write ‘yes’. It is inadvisable to write ‘no’ as this may be considered to be a false statement and could have ramifications in some situations. Any request that a health professional makes for specific health information should be about providing you with better care. You do not have to inform a health professional of your hepatitis C status on the basis of alerting them to the need for extra care in handling your blood. All health services should be employing standard precautions in relation to blood and responding to all clients in the same manner. If a health service requests this information
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from you, it could possibly be an indication of sub-standard infection control procedures in that establishment. It is illegal for health care workers to disclose your health status to anyone without your permission.
What about if I live in a small town? Living in small communities, especially rural communities tends to present unique dilemmas when it comes to disclosure. Anecdotal information suggests that it is wise to be very careful who you tell about your hepatitis C status. Some people choose to travel to another town or a bigger city for health monitoring and in some cases for treatment so as to reduce the potential for breaches of confidentiality relating to their health status. People comment on their experience that confidential information seems to be made more widely known in small towns. This also happens in bigger cities but the consequences may be more significant in a smaller community. The Hepatitis C Council has a free call number for advice 1800 02 11 33 The Adelaide Counselling Team can provide telephone counselling (08) 8362 2000
Disclosing to sexual partners You are not legally obliged to inform your sexual partner that you are hepatitis C positive. Hepatitis C is rarely transmitted sexually and is not classified a Sexually Transmitted Infection (STI). Sexual transmission is probably related to blood-to-blood contact during sex. There are certain circumstances which increase the risk of blood-to-blood contact during sex (eg. the presence of abrasions, ulcers, a STI especially herpes, menstruation, some S&M practises). It is your personal choice to decide if and when to disclose. Some people choose not to disclose to casual sexual partners but do so in ongoing relationships. This may depend on the nature of the relationship and the level of trust you have in the partner. Whatever your choice concerning disclosure of your hepatitis C status to a sexual partner, you should, where appropriate, take steps to prevent blood-to-blood contact during sex.
Disclosing to people you have injected with You have no moral or legal obligation to disclose to people you once injected with. For some people injecting drugs is a long ago event that is no longer a part of their lives or what they identify as part of themselves. However if some individuals you once injected with are still an important part of your life you may choose to discuss your status with them and the implications this may have for them.
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If you are currently injecting you do not have a legal or moral obligation to disclose to people you inject with. You should however follow safe injecting guidelines to prevent any risk of transmission. For information on safe injecting guidelines contact SAVIVE on (08) 8362 9299 or the Drug and Alcohol Information Service (ADIS) for information on Clean Needle Program locations.
What about telling children? (This extract was taken from an article by Penny Mount titled ‘Disclosure of HCV status to children’. Copies can be obtained by contacting the Hepatitis C Council) 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 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 whom 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. If you tell your child about the positive status of a family member, but then ask 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 strategies you will adopt should your child have a secrecy slip up.
Disclosure and sport Individuals are not obliged to disclose their hepatitis C status to club official, team mates and umpires. Many sporting codes use the Blood Rule to prevent the transmission of blood borne viruses. The strict application of this rule should prevent the transmission of hepatitis C. Unfortunately many sporting associations, teams and officials are not aware of standard precautions around blood and are reluctant to enforce the Blood Rule. In these situations individuals with
hepatitis C should take extra care to prevent bloodto-blood contact. Sporting associations should ensure all players and officials have a good understanding of the standard precautions, access to the appropriate equipment, and that precautions are enforced to prevent any possible risks of transmission.
What if I feel I can't tell anyone? If this is something that stresses or concerns you then you may want to contact the Hepatitis C Council of SA where you can openly and confidentially talk with others about your situation. The Council can also link you by phone with other people with hepatitis C and make arrangements for personal meetings if this would be useful. One to one support is available and monthly information and support groups often provide the opportunity to meet with others and share stories, swap ideas and generally gain support. The Hepatitis C council can be contacted on (08) 8363 8443 If you are from a Culturally and Linguistically Diverse (CALD) background and wish to talk on the phone or in person with someone who understands the issues from your own cultural background you can contact PEACE. PEACE is a project with community consultants and a community project officer who is available to provide confidential, culturally sensitive, one to one support. PEACE can be contacted on (08) 8227 1654 The Adelaide Counselling Team provides counselling support to people with hepatitis C and can be contacted on (02) 8363 2000. Other useful contacts are The Hepatitis C Helpline 1800 621 780, the Drug and Alcohol Information Service (ADIS) on 1300 13 13 40 and Lifeline (24hr service) on 13 1114. Please note: Information contained in this article is general, it is recommended individuals seek legal advice on specific issues. Acknowledgements: Thank you to the following people for assistance with this article: David Waterford, Kirsty Hammet and Emma Miller-Senior Project Officers- HIV/Hepatitis C and Related Programs Unit (DHS); Stephen Lawrence-Training and Education Officer-South Australian Equal Opportunity Commission; Penny Mount, CounsellorAdelaide Counselling Team for writing the section on “What about Telling Children” and Cathi Healy and Dr William Donohue-Hepatitis C Council of SA. Thank you also to the many individuals who have discussed their experiences and concerns regarding disclosure with Council workers.
References: Hepatitis C Council of NSW-Hepatitis C what you need to know-because understanding is the key 2001 Australian Federation of AIDS Organisations-HIV AIDS and your Rights, 5th Edition, 1998 Cope-Mental Health & HIV...working together, 2001
Part 2 will focus on disclosure in relation to insurance and superannuation.
Hepatitis C Community News
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Who wants to be a Volunteer ? How did you first hear about the Council? I’m not sure who told me that the council existed but I do remember looking through the phone book and finding it listed. I rang, left a message requesting information on everything and impatiently waited for its arrival. To my surprise, in 2 days information had arrived. Unbeknown to me at the time, my prized info was sent by Ray, a truly dedicated volunteer who was working from his lounge room (there was no office or staff in those days). Why did you decide to become a volunteer? At first, I didn’t want to be a volunteer. I did want to help other people get information and support (remembering what it had meant for me) but when Colin asked if I was interested, I didn’t think there was anything I could really do. I had never worked in an office, I had no clerical skills and computers intimidated me (I couldn’t even turn one on, let alone use it). Emotionally I was a bit up and down, so making a regular commitment was also a bit daunting. I did want to help in some way though, so I offered to help out at crisis times, like when requests were made for large quantities of ‘What you need to know’ booklets or pamphlets. There wasn’t room to swing a cat in the office so Colin would drop off photocopied pamphlets for me to fold at home.
Julie (our first editor) started working part time for the council and I was at the office more often helping make information packs in any free space we could find. I looked forward to spending time with her, being able to talk to someone openly about hepatitis C was a rarity for me. It felt good to help others get the basic information I was so appreciative of. I was most interested in news and research, trying to get a handle on hepatitis C. I was becoming familiar with the Barr Smith library, spending time reading current journals, steadfast in the idea that eventually I would understand some of what I was reading, and I did. The office workload was increasing and Colin offered to send me off to a typing and using a PC course if I could commit to a half day per week. Ironically, I was already volunteering for more than a half day, it was the formality that scared me; I didn’t have much confidence in myself back then. But I was thirsty for information and wanted to share it with others and for this I would need computer skills. So I became the research and resource aid for the council.
One day Colin asked if I would be interested in attending a meeting about a newsletter for people in SA affected by hepatitis C. I thought a newsletter was great idea, but was still was reluctant to become involved. Colin suggested I just come to the meeting with no obligation to do any thing. Doug, the two Julies, Colin and I met in the kitchen at the Joslin complex (the closest room with chairs and a table to the office) and the Hep C Community News was conceived.
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Hepatitis C Community News
I haven't changed much in 30 years
Issue 17
Tell us about your experiences as a volunteer. I don’t know where to start. I’ve learned so much, and not just about hep C. Once I got over my initial fear (that I might break a computer some how) I began to appreciate what a wondrous, fascinating and time saving piece of equipment a computer is. There are always more things to learn, and you can teach yourself (given enough time). Being a volunteer has motivated me to pursue my ever growing interest in hep C research and advocacy. I am also one of a group of positive speakers who tell their stories to help breakdown the stereotypes about people living with hepatitis C. I have volunteered in the past but my experience of being involved with the council equals none. The atmosphere that the staff and other volunteers create embraces and validates people, empowering them to achieve more than they ever thought possible. I’m a very different person now than who I was 4 years ago. I have confidence in myself and my abilities. I’m eager to learn new things with the mantra “If it scares you try it anyway”. Deborah
Mail Bag Hi, I’ve been getting your newsletter for some time and look forward to reading peoples stories. They are always interesting and some I can personally relate too. I have been hoping to read some letters from people with kids. I have a daughter who is going to start high school next year and haven’t told her I have hepatitis C. I’m torn between wanting to nurture an open and honest relationship with her and a strong need to protect her from unnecessary hurt, worry or discrimination. What could happen if she confided in her friends versus what could happen if she found out before I told her and was resentful that I had kept something so important from her? I’d like to hear from other parents about how their children reacted when they told them. How did things change? I look forward to getting some help with this, Jean.
Quiz Answers
1.
Handy Hint
[b] 1 & 3. Approximate breakdown: 55% genotype 1 35% genotype 3
2.
[c] February 1990
3.
[b] False
4.
[c] genotypes 2 & 3 have the highest sustained response rates to combination therapy (approx 70-75%)
5.
[a] In SA 1066 people were diagnosed with hepatitis C in the year 2000.
A safe way to dispose of razor cartridges is to put them into a piggy bank. Make sure the opening is large enough to place them in easily but not drop out.
Hepatitis C Community News
Sabine
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Mail Bag Hello to all readers I was diagnosed with Hep C about 10 years and it has changed my life to say the least. It’s best described as “Living with it is more of a problem than the virus itself”. I have come to this conclusion due to discrimination and the negativity that surrounds it, but I an starting to deal with it a lot better. Before I go on, I must stress the importance of being involved with the Hep C Council who are supportive and non-judgemental, also having family and close friends to support you. I find the newsletters great as they keep you up to date with the latest information available and offer a line of support and experiences from other people in similar situations. In 1992 I was referred to see a specialist. I was advised to participate in the interferon trial and had to have a liver biopsy prior to commencing treatment. Having the biopsy was quite traumatic (don’t panic, just read on) and I stayed a night in hospital in great discomfort. I found it to be of a cold environment and was not offered a lot of support throughout this very distressing period. I responded to treatment but relapsed a couple of years later.
I was quite distressed about having to have another biopsy due to previous experience. My doctor performed the biopsy and it was nothing like the first time. His professionalism, medical skills and bedside manner are second to none. I was allowed to go home six hours later with minimal discomfort and was looked after very well by the nursing staff during my short stay. I am positive about going on treatment and have genotype 3 so the odds of a sustained response this time are in my favour. I am not looking forward to the related side effects as I have heard and read they can be quite substantial. I have a wonderful son of ten years. Prior to going on this treatment I have never told him about it due to not wanting to worry him and place any responsibility or burden on him. I have not specified the illness to him due to his age. However, I thought it was important to forewarn him that times could get tough so he understands why I may not be my usual self, to say the least. A positive attitude, good diet and support will hopefully make a difference, that’s my plan anyhow! The next six months I am only to concentrate on a good response and it gives me time to take focus on other important issues in my life. Best of luck to all living with it and all on treatment! Bye for now H, from South Australia.
I decided to change doctors and I now see a doctor at the Flinders Medical Centre and would highly recommend him to anyone as their specialist. He is extremely informative, shows humour and compassion and really puts you at ease. I am about to commence treatment of the interferon combination therapy but needed to have another biopsy prior to treatment (OH NO!!).
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Do you have a story you would like to share? We are always looking for personal stories and peoples experiences to publish in our newsletter. We would particularly like to hear from people on, or who have completed treatment.
Issue 17
Adelaide Information Evenings The Adelaide information Evenings are for people who are affected by hepatitis C. Guest speakers are invited to speak on topics such as biopsy, treatment strategies and diet. Partners, friends and interested professionals are welcome to attend.
1st Wednesday of each month 6.30pm - 8.30pm
A guest speaker will speak on a given topic followed by question time. Stay on for a chat and light refreshments.
Sept
All Council financial members receive monthly updates on information evening topics. If you are not a financial member and would like more information on evening topics, please contact the Council.
Oct
5th
Nov
7th
3rd
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.
2nd Monday of each month 10.30am - 12.30pm
These Coffee and Info Mornings will be quite informal and provide women with the opportunity to hear from guest speakers, ask questions and have plenty of time to chat. If you would like more information on coffee mornings, guest speaker topics or women and hepatitis C, please contact the Council.
Men’s Information Gathering
13th
Oct
8th
Sept
10th
Nov
12th
Italian Community Educator Available to take telephone information calls from the Italian community.
This Group will recommence in spring. Further details in next newsletter.
Aug
Commencing
September 4th
Tuesdays 11.30am –1.30pm Information and Support Groups are held at the Hepatitis C Council 4 The Parade, Norwood Hepatitis C Community News
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Resource list
Other Services
Hepatitis C Information packs contain a Contact booklet, pamphlets and membership form in a small sized envelope.
The Adelaide Counselling Team Inc provides a free independent counselling and advocacy service specialising in Hepatitis C and associated issues. Ph: (08) 8363 2000
Information Sheets Liver Biopsy Combination Therapy Genotypes Fatigue Facts Hepatitis C in Australia - A Snapshot Cirrhosis Pegylated Interferon
Pamphlets C Positive - What does it mean? What is Hep C - Indigenous What is Hep C - Low literacy ABC Positive Discrimination Hep C - Women, Pregnancy and Babies C Talk - Positive Speakers’ Program Support Group Guide Hepatitis C Council of SA Inc - Council services Hep C - Dental Care Adelaide Counselling Team Healthy Body Art Hepatitis C & Injecting Drug Use
Booklets Preparing for Testing Contact: Post Test Information for Hep C Women and Hepatitis C
Support Group Transcripts Testing & Hepatitis C - Dr Robina Creaser Women and Hepatitis C - Dr Jo Thomas Acupuncture and Hepatitis C - Lynn Lobo
Other Publications Diet and Hepatitis C - A Common Sense Guide to Healthy eating At Home with Hepatitis C Lesbians and Hepatitis C Info for Family and Friends Australian Hepatitis C Chronicle - Quarterly publication of the Australian Hepatitis Council Hep C Review - Quarterly publication of the NSW Hepatitis C Council
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Hepatitis Helpline provides information, counselling, referral and support over the phone. Ph: 1800 621 780 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 The Second Story-Child and Youth Health provides a free confidential youth health service for young people aged 12 to 25 years in the metropolitan area. City (08) 8232 0233 Elizabeth (08) 8255 3477 Christies Beach (08) 8326 6053 ADIS-Alcohol and Drug Information Service provides counselling, information, referrals and a current location list of your nearest Clean Needle Program outlet. Ph: 1300 131340 (24 hrs Toll Free) Nunkuwarrin Yunti Ph: (08) 82235011 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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