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HEP C COMMUNITY NEWS Autumn / Winter 02

Who Wants to be an Editor ? Deborah did… All of us who have been here at the Council for the past three or so years have seen the development of the Hep C Community News and we have also seen the development of its Editor, Deborah Warneke. Deborah has taken on the challenges of hep C and the workings of the Hep C Council of SA with great gusto – or perhaps that should read with great guts – o. From a slightly hesitant beginning, wanting to learn more for herself about hep C and volunteering to ‘help out’ at the Council – Deborah is now a Metro Educator at the Council, a participant in the Council’s positive speaker program ( fielding invitations to ‘educate’ at national conferences ) - and has still managed to be our Editor – but alas, no longer. Deborah has decided it is time to hand on the challenge and the opportunity of the Editor role to another. Deborah will acknowledge she has re-discovered a number of her talents and developed her skills in this very ‘hands on’ role – from researching the latest hep C studies; listening to and recording people’s stories of living with hep C; interviewing for articles;

Issue 20 ‘hounding’ some for promised articles by deadline dates; organising ‘snaps’ to include; designing layout – piecing each edition together ; ‘driving it’ to the printers and supervising the mail out. On this occasion of your final Hep C Community News edition as Editor, Deborah, your colleagues would like to acknowledge that you have undertaken this role with great curiosity, determination, enthusiasm and integrity and we congratulate you on a job well done. We think our readers will agree –

Deborah tries out her interview skills at the 3rd Australasian Conference…

Looking for an Editor for the Hep C Community News The Council is looking for someone from the hepatitis C affected community who has a range of editorial skills and a keen interest in the issues related to hepatitis C to take up the challenge. Skills required: • Writing & proof-reading skills • Research & interviewing skills • Planning and Organisational skills and the ability to meet deadlines

• • •

Experience in layout and production Experience in the use of MS Office suite Ability to work with staff & volunteers at the Council

The position is funded for 6 hours per week, but Deborah tells us there are a few more hours required than this in order to meet the quarterly deadlines !!! If you have an interest in the position, please write to the Council outlining how you meet the skills listed above and why you are interested in the position. Send your expression of interest to: The Editor Hepatitis C Council of SA P.O. Box 782 Kent Town SA 5071 1 Hepatitis C Community News Issue 20


IN THIS ISSUE Volunteer Program

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C Clearly Program

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Men, Health & Hep C Survey News in Brief Conference Report Dental Care

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Hepatitis C Council SA Inc 4 The Parade Norwood 5067

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Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55 (GST inclusive)

Mosaic Counselling

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You can request a zero-cost membership

Prison Initiatives

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Donations do not attract GST

Farewell Adelaide Counselling team

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Health Monitors

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Youth Focus ◊ Simon’s Story

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HIPP Program

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Postal Address

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Hep C Community News PO Box 782 Kent Town SA 5071

Alcohol Advice

Support Group Information Mail Bag Resource & Additional Service Guide

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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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Volunteer Program Hi to all our readers, my name is Janette Chegwidden (I can blame the Cornish ancestors for this moniker). I am the newly appointed Volunteer Coordinator for the Hepatitis C Council. My background has mainly been in government, in the fields of health and education. In particular, I have worked with the Communicable Diseases Branch of the Commonwealth Department of Health and Aged Care, and with TAFE Queensland, where I taught management skills to Aboriginal and Torres Strait Islanders in Far North Queensland and throughout the Torres Strait. Before TAFE, I spent a very eventful three years in Papua New Guinea as a trainer. I have also worked for Lifeline as a volunteer telephone counsellor and shop assistant (I’m an op-shopper from way back!). The position of Volunteer Coordinator has been newly created specifically to help organise volunteer workloads and to support the volunteers. We currently have six very active volunteers and I am looking forward to providing more opportunities for volunteers from the hep C affected Community to work with the Council.

Presently, volunteers undertake a wide variety of tasks, for example, sending out flyers, filling orders from organisations for hepatitis C related information, staffing stalls at events (Womad, Passion in the Square), and designing graphics for inclusion on Council publications. Volunteers can also get involved in participating in the Positive Speakers program, and staffing the telephone line information service, after attending the appropriate training The Council gains a lot from its volunteers and in return, volunteers have an opportunity to develop new skills and gain experience in a supportive proactive organisation. Volunteers get to meet new people, develop new skills and give back something to the community.

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Some of our volunteers have been successful in obtaining paid employment. The Council’s volunteers play an active role helping the Council achieve its objective: contributing to the improved health and quality of life for people affected by hepatitis C.

If your life is directly affected by hep C you may be interested in our volunteer program, please call me on 8362-8443 for a “no obligation” chat. Following that, you can visit the Council and after an introduction to the program, you can decide whether the program suits your present needs. Janette Chegwidden

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C Clearly Program

A Program for people at risk of Hepatitis C and for people who are Hepatitis C antibody positive has commenced. It is called the “C-CLEARLY” Program and employs William Donohue from the “Health in Human Diversity Unit” of the Department of General Practice at Adelaide University. William is a medical practitioner and used to be the Rural Education Officer for the Hepatitis C Council of South Australia. The Program maintains and improves the well-being of people living with HCV, and people who may be at increased risk of HCV infection.

This will be achieved by: ♦

Identifying any current physical, psychological and social problems which might affect a participant’s health

Tailor making a plan, in close consultation with the participant, their GP and other Health Care Workers, to address any problems identified. The care plan will include education about HCV

Coordinating the participant’s health care in a way that is sensitive to any special needs they may have

Reviewing their progress each one to two years and assessing the success of the plan

Providing training and support for GPs and other Health Care Workers involved in care of people with Hepatitis C or at risk of Hepatitis C

The aims of the Program are to: Contribute to the minimisation of HCV transmission in South Australia. * Provide services (Dietitian and Psychologist consultations are available as part of the Program). * Increase the number of General Practitioners, Aboriginal Health Workers, Nurses and other Health Care Workers who are highly skilled in the care of people living with HCV and people who may be at increased risk of HCV infection *

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MEN’S SURVEY

Who is eligible to enroll? You are welcome to participate in the Program if you are in any of these groups: *

If you have hepatitis C

*

If you have ever injected drugs

*

If you have body piercing or tattoos

*

If you have ever been in prison

*

If you regularly require blood products

*

If you are a health care worker

*

If you identify as being an Indigenous Australian

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If you have ever lived in a country where hepatitis C is very common

How do I enrol? Most people will be referred to the Program by a general practitioner. If you do not have a regular GP, or feel unable to discuss the reasons for your referral with your usual doctor, William will be able to put you in contact with GPs who have a special interest in HCV. People can also refer themselves or be referred by sector workers. You will need to contact the Project Officer, Dr William Donohue, to enrol (08) 8410 0466 /mobile 0428 428 027. You will need to allow two hours for the enrolment process and there is no cost. This Program is funded by Commonwealth Department of Health and Aged Care and South Australian Department of Human Services and supported by unrestricted grants from Schering-Plough Pty Ltd.

Men, Health & Hep C Little is known about the personal, social and health needs of men with hepatitis C. A study is now being conducted by the School of Health Sciences at Deakin University that will investigate the experiences of men with hep C. The Men, Health and Hep C study aims to describe how hep C affects men, so that health and support services can be better targeted to meet the needs of men with hep C. The study will survey 600 men in Melbourne and regional Victoria (men from SA are welcome to participate), asking them about their experiences coping with hep C. The Men, Health and Hep C research team have extensive experience in the areas of public health and the social and cultural aspects of blood borne viruses. This study is completely anonymous and participation is voluntary. If you would like more information or would like to participate, please contact the research coordinators, Meredith Temple-Smith on (03) 9251 7252, or Mark Stoove on (03) 9251 7059. Further information can also be found on the web at www.hbs.deakin.ade.au/hepc This project is funded by the National Health & Medical Research Council (NHMRC).

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News in Brief Measurement of serum hyaluronic acid in patients with chronic hepatitis C and its relationship to liver histology. Consensus Interferon Study Group. McHutchison JG, Blatt LM, de Medina M, Craig JR, Conrad A, Schiff ER, Tong MJ. Division of Gastroenterology/Hepatology, Scripps Clinic, La Jolla, California 92037, USA. jmchutchison@scrippsclinic.com

BACKGROUND AND AIMS: Chronic hepatitis C is a slowly progressing inflammatory disease of the liver that can lead to cirrhosis and its complications. Assessment of liver damage in hepatitis C has been primarily via histological evaluation. Liver biopsy, while useful in determining the extent of liver damage, has associated costs and places patients at a small but finite risk of bleeding. Studies in small patient populations have identified serum markers shown to correlate with liver histology, including procollogen III peptide and hyaluronic acid (HA). To determine whether serum HA was a reliable predictor of cirrhosis and fibrosis, we examined serum HA concentrations from 486 chronic Hepatitis C virus (HCV) patients. METHODS AND RESULTS: Patients were anti-HCV and HCV RNA positive, with elevated alanine aminotransferase values and underwent a liver biopsy. Sera were obtained at the baseline for HA using radioimmunoassay methodology. Patients with cirrhosis had significantly higher serum HA concentrations compared with noncirrhotic patients (382+/-31 vs. 110+/-9 microg/L respectively, P< 0.001). Patients with fibrosis had significantly higher mean serum HA concentrations (179+/-11 microg/L) compared with patients without fibrosis (62+/-20 microg/L; P< 0.001).

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The correlation between HA concentration and the components of the Knodell histological activity index score revealed no strong associations with the exception of fibrosis, which showed moderate correlation (R=0.5421, P<0.001). The clinical value of HA measurement appears to be its ability to exclude cirrhosis. A HA value of < 60 microg/L excluded the presence of cirrhosis or significant fibrosis with a predictive value of 99 and 93%, respectively. CONCLUSIONS: Serum HA measurement may be clinically useful to non-invasively assess the degree of fibrosis and cirrhosis. Further prospective studies are warranted to determine the clinical utility of HA as a noninvasive marker of liver fibrosis. J Gastroenterol Hepatol 2000 Aug;15(8):945-51

Decreased bone mineral density after therapy with alpha interferon in combination with ribavirin for chronic hepatitis C. Solis-Herruzo JA, Castellano G, Fernandez I, Munoz R, Hawkins F. Department of Gastroenterology, Hospital Universitario 12 de Octubre, Universidad Complutense, Madrid, Spain. jasolis@h12o.es

BACKGROUND/AIMS: Several thousand patients with chronic hepatitis C have been treated with interferon plus ribavirin. After observing a male patient who developed severe bone loss during this treatment, we studied skeletal status and bone mineral metabolism in patients on therapy with interferon plus ribavirin.

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METHODS: Bone mineral density and biochemical bone markers were studied in 32 male patients (31-58 years old) treated for 12 months with either interferon alone (group 1; n=13) or interferon plus ribavirin (group 2; n= 19). RESULTS: Bone mineral density was significantly lower in group 2 (0.877-0.07 g/cm2) than in group 1 (1.108+/-0.08 g/cm2, p<0.001). Likewise, T- and Z-score values were also decreased in group 2 (T:-1.95+/-0.6. Z: -1.76+/0.51) compared with group 1 (T: 0.19+/-0.6; p<0.001. Z: 0.26+/-0.6; p<0.001). Serum and urine biochemical bone markers were normal in both groups. However, urinary calcium excretion was decreased in patients on combined therapy. CONCLUSION: Treatment of chronic hepatitis C with interferon plus ribavirin may induce bone loss. This secondary effect should be investigated during the follow-up of these patients, since they may require therapies aimed at prevention or amelioration of these defects. J Hepatol 2000 Nov;33(5):812-7 â&#x2122;Ś

Taken with thanks from HEPV-L info list

High proportion of untreated chronic hepatitis C patients suffer emotional distress. Approximately 35% of patients with chronic hepatitis C, who are not receiving antiviral therapy, suffer from clinically significant emotional distress, claim researchers from Ann Arbor, Michigan, USA. The team determined the prevalence, type, and severity of emotional distress in a large group of consecutive chronic hepatitis C (CHC) patients not receiving antiviral therapy.

They reported their results in the March issue of the Journal of Hepatology. A brief symptom inventory, together with a questionnaire, was used to study 220 outpatients with compensated CHC. Of the participants, 35% reported significantly elevated global severity index (GSI) T-scores, compared to an expected frequency of 10% in population controls. In addition, significantly elevated depression, anxiety, somatization, psychoticism, and obsessive-compulsive subscale T-scores were reported in 28%-40% of subjects. Subjects with an active psychiatric comorbidity had significantly higher GSI and subscale T-scores, compared to subjects with active medical co-morbidities and subjects without medical or psychiatric co-morbidities. However, patients with CHC alone were also found to have a higher frequency of elevated GSI T-scores compared to population controls (20% versus 10%). Broad array of psychological symptoms observed in chronic hepatitis C sufferers. Journal of Hepatology Robert J. Fontana, of the University of Michigan Medical School, Ann Arbor, said on behalf of his colleagues, "Clinically significant emotional distress was reported in 35% of chronic hepatitis C patients not receiving antiviral therapy. In addition to depression, a broad array of psychological symptoms was observed. Further investigation into the etiopathogenesis and treatment of emotional distress in chronic hepatitis C patients is warranted," he concluded. J Hepatol 2002; 36 (3): 401-7 22 February 2002 â&#x20AC;˘

Source URL:http://www.gastrohep.com/ news/news.asp?id=1133

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Basic Sciences – Clinical Sciences – Community Responses – Epidemiology & Social Research – Policy & Prevention – Selected extracts from the Rapporteur’s Reports

From the 3rd Australasian Conference on Hepatitis C Full text articles are available on the net - www.hepc.conf.au Basic Sciences Stream Two interesting studies from Dr Anthony Freeman and Dr Jeffery Post (both from Prince of Wales Hospital, Sydney) investigated high risk HCV seronegative IDUs and the natural history of primary infection in a cohort of prison inmates respectively. The first study identified antibody and RT-PCR negative individuals who had HCV-specific cellular immunity. They concluded that these individuals were “HCV resistant” and that a protective cellular immune response is maintained by episodes of sub-clinical infection without seroconversion. The second study identified prison inmates with acute HCV infection who cleared virus with no hepatitis, no detectable antibody response however, a transient specific CTL response was detected. Either, current antibody detection methods are unable to detect seroconversion in these individuals or cellular immunity is sufficient for protection. Long-term monitoring of these individuals is required, while an understanding of the underlying immunological response will help in vaccine development. Rapporteur: Dr Michael Beard

Clinical Sciences Stream Management issues concentrated on three areas: optimising current antiviral therapy; addressing host factors that influence treatment outcome; and management of acute disease. Michael Manns’ comprehensive talk on antiviral therapy in chronic HCV emphasised the need to individualise therapy based on factors such as genotype, viral load and body weight. The Pegylated Interferon/Ribavirin trials have demonstrated benefit for genotype 1, but no convincing benefit for genotype 2 or 3. There was a higher response rate in genotype 1 patients with low viral load or a higher Ribavirin dose. The side effect profile is similar although less severe and recent quality of life data show improved QOL on PEG as compared to standard three times a week combination therapy.

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The optimal duration of therapy for genotype 2/3 has not yet been established as there was no six month treatment arm in the Manns’ trial. Of interest: the control arms of both trials showed a higher sustained viral response rate (SVR) than previous trials, and that has been attributed to better compliance rates. Analysis of the data shows a SVR of >50% in those patients with good compliance. Non-responders and cirrhotics demonstrate improved histology post-Interferon therapy, raising the possibility of maintenance therapy aimed at halting fibrosis rather than at viral eradication. Elizabeth Powell (Princess Alexandra Hospital, Brisbane) presented exciting data demonstrating that fat plays an important role in HCV. Weight reduction achieved by an outpatient dietician intervention reduced steatosis, ALT level and the degree of fibrosis. Weight loss was maintained medium term. These results demonstrate that there is a possible overlap between NASH (non alcoholic steaohepatitis) and HCV, and show that simple, cost effective manoeuvres can help retard fibrosis. The session on acute HCV infection began with evidence from Greg Dore that 450 of the 20,000 new notifications per year are acute or newly acquired infections (2%). These patients are predominantly female teenagers. The diagnosis and clinical course of acute infection was addressed by Darryl Crawford, who highlighted that those who present with acute hepatitis have a lower risk of chronicity than documented seroconversion. A self-limited or ‘resolved’ course is seen more commonly in infants, females, and jaundiced patients who have a lower viral load. High dose Interferon monotherapy has been shown by Manns et al to result in 98% sustained viral response in seroconverters. However, this group was biased towards those with medically acquired hepatitis with excellent compliance with treatment, and high dose Interferon does not represent a practical regime for many seroconverters.

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Community Responses Stream This Stream covered five basic themes: • Prevention: Why do people still get hep C? • Treatments and management: what do we want? • Identifying barriers to health maintenance • Discrimination • Developing community responses Preface What struck me in summarising Community Responses, was the powerful confounding impact across the entire stream - of discrimination and stigmatisation around injecting drug use. Speakers argued that this discrimination was a social construct, the result - in most part - of almost a century of illegality. The illegal nature of injecting, the primary HCV transmission risk behaviour, greatly complicates our HCV community response. It impinges on the political and community-wide support necessary for a successful HCV response and it alienates those people most at risk. Rapporteur: Paul Harvey

Epidemiology & Social Research Stream Matthew Law, from the National Centre for HIV Epidemiology & Clinical Research (NCHECR), described modelling of the hepatitis C virus in Australia, estimating the current prevalence to be 210,000 cases with 16,000 new infections annually. Albeit reluctantly he predicted there may be 400,000 to 500,000 cases of hepatitis C in Australia in 2020. Dr Law emphasised there were many assumptions made in modelling and we must be cautious in predicting future disease and overinterpreting the model results. Professor Kate Hankins from McGill University, Canada and Professor Nick Crofts from the Macfarlane Burnet Institute, discussed the importance of recognising that in 2000 hepatitis C was predominantly transmitted through injecting drug use. We need to focus our research and harm reduction strategies in this area. Both indicated that the risk of sexual transmission was extremely low (0.01% per year). Professor Hankins also highlighted the need for further research in the area of vertical transmission of hepatitis C. Speakers at the Monday session ‘Defining barriers to effective care’ emphasised the need to provide culturally appropriate information and improve access to clinics for people from different cultural backgrounds, particularly women from South East Asian and Middle Eastern backgrounds.

The session ‘Hepatitis C and quality of life’ discussed the importance of providing support and understanding for people who suffer from hepatitis C. Dr Graeme Macdonald presented preliminary data on the quality of life of people with hepatitis C, reporting they had significant fatigue, irritability, physical tiredness, poor quality sleep and depression. Professor Sandy Gifford reported how people with hepatitis C rated their quality of life at a lower level compared with how people with HIV rated their quality of life. Dr. Greg Dore emphasised that apart from when people developed advanced liver disease, their impaired health-related quality of life (HRQOL) does not appear to be associated with severity of liver disease. Therefore more research is required into the impact of treatment on ‘non-liver symptoms’ of hepatitis C and other strategies to improve the management of these symptoms. The first proffered paper session on Tuesday was ‘Patterns of hepatitis C transmission.’ Dr Margaret MacDonald described the increasing prevalence of hepatitis C in new injecting drug users (IDUs) (injecting for less than three years) rising from 13% (1996) to 26% (2000). The prevalence of hepatitis C in people aged less than 20 years rose from 32% (1998) to 44% (2000). Further prevention efforts are needed to limit the spread of the virus in this age group. The next session, ‘Determining prognosis for people with chronic hepatitis C’, concerned the need for accurate information on the probability of an individual patient developing severe liver disease. Dr. Tony Freeman described individual level models that showed being male, heavy alcohol intake, high ALT and higher-grade fibrosis on biopsy increased the likelihood of progression. Age at infection and mode of infection did not appear to be important. Dr. Geoff Farrell reminded the audience that the majority of people with HCV have chronic progressive liver disease but that the rate of progress in many people is so slow as to not be clinically relevant. He reported a patient’s serum albumin was an important prognostic marker with the mortality for low albumin being 50% in five years. Stuart Loveday completed the session by highlighting the need for health care workers and community-based workers to be well informed. The “fear factor” associated with hepatitis C needs to be removed by providing the patient with accurate information in a positive manner. The final session of the Epidemiology & Social Research Stream was ‘Risk of transmission of hepatitis C in injecting drug users’. Robyn Dwyer described risk factors associated with unsafe injecting; these included

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being young, having unstable accommodation, frequent injecting, poly drug use and injecting in public places. Patricia Preston discussed the importance of IDUs not being considered as a homogeneous group; there were many different subgroups of injectors and this should be considered when developing prevention activities. Campbell Aitken gave preliminary results of research measuring the determinants of hepatitis C transmission by studying an IDU's injecting network. An interesting aspect of his results was finding a group on IDUs who were HCV antibody and RNA negative despite frequently injecting with HCV RNA positive IDUs.

Dental Health Care

Rapporteur: Dr Margaret Hellard

Policy & Prevention Stream Dominant themes for the opening session – and throughout the Policy and Prevention Stream were: • The role and value of New Syringe Programs (NSP) as first-line harm reduction; • The importance of providing service quality – which could include a range of other services for NSP clients, hence the focus on linkages and new models of NSP service, particularly in taking the service to the client, rather than waiting for the client to come to the service, given the reluctance of clients to access mainstream services; • The importance of excellence in support for workers, particularly in relation to training, ongoing professional development and networking on a national as well as a local or regional basis; • The necessity for further identifying and including marginalised communities; • Sentencing Reform which recognises the need to keep people out of prison which, in terms of HCV and drug use, has to be one of the best primary prevention strategies ever; • Ongoing evaluation of programs to provide more information about injecting drug use and practice; • NSP is very successful in terms of return for investment, yet still severely under funded; • Law reform, cultural change or just plain old education for police personnel which can and will make a difference to disposal issues; • And possibly one of the most difficult issues – introduced early on in the Satellite and then discussed at length later - that of the introduction of retractables into the NSP. Rapporteur: Jean Wyldbore

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An effective preventive care program for a person diagnosed with hepatitis C is often the most important immediate goal for the dental practitioner. There is evidence to suggest that people with hepatitis C are prone to tooth decay, suffer loss of self-esteem due to poor oral aesthetics and also have difficulty with diet due to poor oral health. 5

Xerostomia Recent studies have shown an increased incidence of dry mouth or xerostomia in patients with hepatitis C. In particular, patients on antidepressants may display this symptom.6, 7 The role of saliva includes cleaning, lubrication, chemical protection and antibody and cell mediated immune defence. Its depletion can lead to rapid and widespread destruction of the dentition, severely impacting on the patient’s quality of life. Indicators of reduced saliva levels include patients complaining of dry mouth, particularly at night; sore oral tissues, particularly tongue, gums and cheeks; frothy foamy and stringy saliva; difficulty talking, eating and swallowing; halitosis; dental decay and tooth sensitivity. The management of xerostomia is aimed at prevention of damage to the dentition and often involves simple but effective treatment.

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Initial management strategies include: Saliva stimulation by sialogogues such as chewing gum or sugar free sweets and increase fluid intake to reduce the effects of dehydration. In very severe cases cautious oral administration of pilocarpine solution (0.5mg/ml, 5ml qid) may be of benefit. Preventive dental care such as improving oral hygiene to remove the dental plaque responsible for much of the damage. Diet analysis and advice is important to reduce both the frequency and amount of simple and complex carbohydrate intake. Application of home fluoride, either as a rinse or gel, or remineralising solutions is essential. Changing to a non-foaming dry mouth toothpaste will improve oral comfort. Saliva replacement with frequently sipped water or artificial saliva is essential in providing symptomatic relief by lubricating the oral cavity. Saliva replacements that stimulate the protective functions of saliva, when incorporated with appropriate preventive care, offer the greatest protection against the breakdown of oral hard and soft tissues.

Cirrhosis In patients with cirrhosis, the most significant problem in terms of dental care is the likelihood of prolonged bleeding following dental procedures, caused by a lack of coagulation factors and thrombocytopaenia (a common cause of bleeding disorders). Consequently, any invasive dental treatment (extractions, surgery and extensive periodontal treatment) should be undertaken after consultation with the appropriate medical specialists. Simple treatment may be carried out utilising agents to establish local control of bleeding (for example topical tranexamic acid).8 There is a small but significant risk for a patient with severe cirrhosis that drug interactions and toxicity will burden an already stressed liver. The use of octapressin as a vasoconstrictor, for example, is contraindicated in someone with extensive liver dysfunction. Prescribing medications that are processed or excreted in the liver are also potentially hazardous. Drugs such as metronidazole, tetracyclines, erythromycin and paracetamol are contraindicated for people suffering liver failure.9

HCV therapy In addition to medical complications arising from liver disease, problems in delivering dental care also exist for those undergoing antiviral therapy. Drugs such as interferon, ribavirin and corticosteroids may lower resistance to infection and cause bleeding, so non-urgent invasive dental treatment should be postponed until therapy has ceased. Urgent dental treatment needs to be undertaken in consultation with the appropriate medical specialists.10 Sporadic dental care will not address the oral health needs of many people suffering symptoms from hepatitis C infection. If oral health and prognosis for dental treatment is to be improved, then oral care treatment plans incorporating long term prevention components need to be developed for each patient, so that the influences of medication and the effect of infection with a chronic virus can be overcome. The use of topical fluorides, oral hygiene instruction, dietary counselling and regular recall should be combined into a comprehensive treatment protocol for patients with hepatitis C infection. References 5. Coates, E.A. et.al, “Hepatitis C infection and associated oral health problems”, Australian Dental Journal 2000,45:(2):pp.108 -114 6. Ibid 7. Roy, K.M. and Bagg, J., “Hepatitis C virus and oral disease: A critical review”, Oral Diseases, 5:270-277, 1999 8. Coates, E.A., Walsh, L. and Logan, R., op.cit 9. Ibid 10. Ibid 11. Central Sydney Area Health Service op cit, p.23. 12. Coates, E.A. et.al, op.cit

Taken from the recently released Dental Health Hepatitis C the Facts now available from the Council.

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MOSAIC COUNSELLING A Service for people whose lives are affected by HIV/AIDS or Hepatitis C.

Mosaic is a free and confidential counselling service designed to support the emotional and mental health and well being of: children, adolescents, women and men whose lives are affected by HIV/AIDS or hepatitis C, including family, friends or carers. Mosaic is a new service for Relationships Australia, funded by the Department of Human Services (HHARP), to be provided by Relationships Australia (SA), in recognition of the emotional and psychological impact of a life changing illness on peoples lives. Relationships Australia has recently appointed two counsellors to the Mosaic service, Anne Bourne and Bill Gaston. Anne and Bill bring a range of experience and knowledge to working with people living with, or affected by HIV/AIDS and Hepatitis C. They are committed to providing a service that is sensitive, non judgmental, supportive and which acknowledges each person’s unique needs and circumstances. The counsellors understand the importance of protecting confidentiality and the service is designed to maintain privacy. They can assist with issues such as: recent diagnosis and treatment issues; the impact of living with a long term illness; depression, anxiety, panic; grief and loss; effects of discrimination and prejudice; relationship and family issues; sexual concerns; alcohol and other drug use –anything that is having an impact on health and wellbeing. The service is based at the Relationships Australia offices at 55 Hutt Street, Adelaide. However, counselling can be provided at other places depending on client request and counsellor availability. If you would like to make use of this service ring the Client Appointment number at Relationships Australia (SA), Ph; 8223 4566, and request an appointment with Anne or Bill. Relationships Australia would like to thank the Adelaide Counselling Team for their work in providing counselling to the HIV/HCV affected community over the previous 12 years, acknowledging their grassroots, volunteer beginnings and their growth into a dedicated, diverse and professional team. Relationships Australia hopes to build on these foundations, bringing to the community the added benefits of a daytime as well as an evening service, a central location and an infrastructure and reputation for excellence & accountability in service provision, which the organisation has built over the past 50+ years. DAY AND EVENING APPOINTMENTS!!!

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Is alcohol abstinence the way to go? Dr Greg Dore outlines alternatives to alcohol abstinence for some people with hepatitis C As with many aspects of information for people living with hepatitis C, messages regarding “safe” levels of alcohol intake vary considerably. Although studies that have examined the influence of alcohol intake on liver disease progression have only found high levels (four or more standard drinks per day) to be associated with more rapid disease progression, many clinicians advocate following an abstinence pathway. This philosophy is not unique to hepatitis C, with alcohol and pregnancy another example of where the “any level is unsafe” message is often pushed. But, is there a reasonable message for people living with hepatitis C? There is little doubt that heavy alcohol intake is a strong “co-factor” for liver disease progression, and in fact may have a multiplicative rather than additive effect. That is, if chronic hepatitis C increases the risk of cirrhosis by say seven times above the general population, and heavy alcohol intake increases the risk by five times, then chronic hepatitis C and heavy alcohol intake may increase the risk by 35 times, rather than 12 times. On the other hand, there are many people living with hepatitis C who have drunk heavily for many years and have limited liver damage. My advice to all people with hepatitis C is that heavy alcohol intake should be avoided (more than 4 standard drinks per day), but my advice regarding lower levels of intake is based on an assessment of other factors. (Continued next page)

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For example, if a person has been infected for 15-20 years, has been drinking at moderate levels (2-3 standard drinks per day), and on liver biopsy has no or minimal liver scarring (fibrosis), then abstinence is not necessary. Some moderation may be advisable (say to 1-2 standard drinks per day), and heavy intake at any stage of the week should be avoided (so you canâ&#x20AC;&#x2122;t save the 1-2 drinks per day for a big weekend binge). All Australians especially those with hepatitis C, should have two or more alcohol free days every week. In contrast, a person who has been infected for the same estimated duration, and has been drinking at the same level, but who has progressed to severe scarring (fibrosis) should attempt alcohol abstinence.

Recommendations regarding alcohol intake are more difficult in cases where the duration of infection is difficult to estimate and a liver biopsy has not been performed. In these cases, people who should minimize their alcohol intake are those with other cofactors for liver disease progression (eg obesity, co-infection with HIV or chronic hepatitis B, high ALT levels). In these cases, however, it would be preferable to establish liver damage by performing a liver biopsy. Knowing the extent of liver scarring, advice on both alcohol intake and antiviral therapy can be more effectively provided. Greg Dore is an Infectious Disease Physician at St Vincentâ&#x20AC;&#x2122;s Hospital Hepatitis Clinic, Darlinghurst, NSW.

All people with hepatitis C who have progressed to cirrhosis should definitely avoid alcohol intake (see table below).

Recommendations for alcohol intake based on stage of liver disease and duration of therapy Stage of fibrosis and duration of infection

Alcohol intake (upper limit)

Stages of fibrosis

Stage 0-1

Stage 0-1

Stage 2

Stage 2

Stage 2-3

More than 20 yrs

10-20 yrs

More than 10 yrs

Less than 10 yrs

Any duration

1-2 0-1 standard drinks standard drinks per day per day

NO ALCOHOL

NO ALCOHOL

1-2 standard drinks per day (women), and 2-3 standard drinks per day (men)

0 = no liver scarring 1 = minimal scarring 2 = moderate scarring

3 = severe scarring 4 = cirrhosis

All Australians especially those with hepatitis C, should have two or more alcohol free days every week.

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Two Hepatitis C Initiatives in Prisons Just to inform everyone there will be two new initiatives regarding Hepatitis C in Prisons. The first initiative is a video called – Staying Safe In Prison. The second is the introduction of the first SA Prisons Hepatitis Phone Helpline. As we all know hepatitis C prison prevalence and incidence rates are considerably higher than in the general community. Although we don’t have accurate data for South Australia, it is believed our rates are comparable with other jurisdictions. Studies from New South Wales indicate that the prevalence rate is one third of all male prison entrants and approximately two– thirds of all female prison entrants are hepatitis C antibody positive.1 The path taken to get the Staying Safe In Prison video up and running has not been easy. I would like to thank the HIV and Hepatitis Related Programs Unit at Communicable Disease Control Branch, Department of Human Services and the South Australian Film Corporation for their contributions. Also for the support and contribution of the Custodial Programs Unit, Department for Correctional Services and Foundation Studios. We are now looking forward to the production phase of the video commencing shortly. The aim of the video is to raise awareness in regard of the hepatitis C virus, modes of transmission within a prison environment and services available to prisoners. The video is specifically aimed at prisoners with an emphasis on graphics, animation and narration of fictional stories about different prisoners and their association to hepatitis C.

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Prison peer supporters will be used as consultants on the script and footage will be filmed in prison environments. Actors will play the main roles but minor roles may go to prisoners and staff, although this is yet to be negotiated. Hepatitis C education does occur in all prisons however it is fair to say that sometimes some prisoners fall through the information net. Also, we find that the quality of hepatitis C information sometimes varies. When this video is distributed throughout the South Australian prison system, it will assist in getting reliable and accurate information to all. The production will begin in the second quarter of this year and the final product will be ready for release towards the end of the year. The second Project is a joint initiative between The Drug & Alcohol Service Council who through The Alcohol & Drug Information Service and Department for Correctional Services are providing a SA Prison Hepatitis C Phoneline Helpline. Currently 1800 community information numbers are not available to prisoners under the monitored Arunta telephone call system. This initiative allows prisoners through a specifically allocated number to access the Hepatitis Helpline number in the same manner as is available to the general community. This initiative will be running by the time this Newsletter edition is printed and circulated.

If any one would like more information on the Projects please don’t hesitate to contact me on 8226 9161

Anton Colman Health Promotion Officer Department for Correctional Services

1

Butler, T., Doolan, K., Ferson, M., et.al. (1997) Hepatitis B & C in prison: Prevalence and risk factors. Medical Journal of Australia, 166: 127-130

Hepatitis C Community News

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Thankyou and Farewell to the Adelaide Counselling Team It was a sad occasion on Friday 21 June when the Council hosted a farewell for members of the Adelaide Counselling Team to thank them for the counselling services they have provided for members of the hepatitis C affected community and the HIV affected community for the past 9 years. Team members worked closely with the Council over the past couple of years, offering their expertise, experience and good humour on many occasions to support the development of Council services for our community. Best wishes to you all.

How do you Monitor your Health? The Health Monitor aims to help people with hepatitis C to maintain good health and develop useful relationships with health care providers. Why monitor your health? Keeping a record of your health can help you make better health care decisions. Use the Health Monitor to record Test results ♦ Medications, treatments and therapies you are using ♦ Symptoms or side effects you experience ♦ Appointments and things to remember ♦ Information about allergies, vaccinations and other health details ♦ Contact details of health workers ♦ Personal health goals ♦ Health Monitors are available for people with hepatitis C Phone 8362 8443 (Regional callers) 1800 02 11 33 For a Health Monitor to be sent to you free of charge

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Personality Disorder. It is harmless to my friends and to strangers, but quite stressful for me.

Youth focus

I will tell you a little bit about my experience in Perth where I contracted Hepatitis C. My trip to Perth began when my parents told me to leave and that they were sick of me. That pissed me off. Anyway, I left for Perth with high hopes and $350, $50 of which went on booze on the plane. When I arrived I caught the shuttle bus into the city and met a young librarian (who we will call Mr X). Mr X let me stay at his house, he also took me to his speed dealer’s house and got me some stuff. I shouted him and his friends and we all went to a lookout. It was all-in-all a good first night in Perth.

Simon’s Story My name is Simon and I am a volunteer at the Hepatitis C Council of S.A. It is one of the positive things in my life and I am not referring to my blood test either. I have been doing a lot of computer work recently trying to improve my overall ability and my graphics design in particular. This is something that helps me day to day and hopefully will give me an advantage in later work or study. It will be much nicer having a job now than it was in the past. In the past I was on drugs to the extent of using them at work and eventually quitting some of my jobs. Now I am 21 and I want to spend my money on things that will improve my lifestyle rather than make me feel on top of the world for 5/6 hours. My work at the Council is very fulfilling-it is a positive feeling. You are doing something for the community, even if you do not want to work full steam ahead, all of your efforts are praised and like they say healthy mind = healthy body. Some of the conflicts in my life are contracting hepatitis C at a fairly young age, but mainly my personality disorder, which if any body wanted more info on, look in any mental heath book/encyclopedia under Borderline

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I had a short stay at Mr X’s house, followed by a horrible suicidal speed binge living on the streets and the local nut house. Towards the end of this, I realised that I needed to get away from it all. So I came to South Australia and this worked like a treat. Unfortunately, I had contracted hepatitis C from somewhere during my speed binge. I was prepared for it when I found out I had hepatitis C, because I had friends who had it - but I was not as informed as well as I am now. I have had hepatitis C for almost a year now. At first my ALTs were rather high, about 1400 but they rapidly became normal and have remained that way for the rest of the time, I have regular testing as well. I guess its not so bad, with a positive outlook and some support from friends and family or just something as simple as a community based counselling centre. I guess if I had a message for young people it would be “drugs are good fun, I love them, even though I now choose not to do them. But if you do, just make sure it’s really safe.” Anyway, I wish luck and good fortune to whoever is reading this. Simon

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H.I.P.P. Hepatitis C Intervention and Prevention Program Providing information and support to young people at risk of hepatitis C

Adelaide Information Evenings

6.30pm 8.30 pm

1st Wednesday of each month

!

H.I.P.P. aims to increase awareness of hepatitis C amongst young people.

Please register your attendance by calling the Council on 8362 8443

!

Provide counselling, support and education to clients.

!

Hepatitis C testingâ&#x20AC;&#x201C; pre and post test counselling

!

Provide peer education in consultation with the client group.

Information and Support Groups are held at the Hepatitis C Council 4 The Parade, Norwood

!

Provide access to clean needles and injecting equipment.

Who is eligible? !

Young people aged between 12-25 yrs.

Contact: Leslie at Streetlink, Ph : 8231 4844 9am - 5pm Mon - Fri

Hepatitis C Awareness Week November 4-8

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if things would fall apart. The initial two weeks of self injecting Interferon and daily doses of Ribavirin was a new discipline and the immediate effects were very uncomfortable. The first side effects were worth experiencing as a reference point for how I would feel later during the six month programme.

Mail Bag HEPATITIS C HITS HOME In October 2000 (15 months ago), my wife and I met the shock of the news of me being HCV positive. The revelation came about as a result of screening my Red Cross blood sample when I had decided to resume donating after a lapse of more than two decades. It was a great blow to us, having found some health stability following years of struggling with injuries and related problems. We knew that the implications of me having Hep. C were serious, but knew nothing about it. To appease our anxiety we began the acquisition of knowledge of Hep. C. This was a desperate and puzzling experience because we kept encountering the known boundaries, thinking incredulously "Is that it ?". So we looked and asked for more from numerous sources, but crossed the same medical scenarios. It appeared that that Hep. C was a very big problem with a compact brief. Our relationship with the virus seemed ominous, especially with regard to its virulence, and the need for precautions. Our anxiety eased a little as none of the family had been infected, and we came to understand that this is a long term disease. We came to view it as an unwelcome visitor whose status would be reviewed after treatment. The assessment from a liver biopsy put me into the combination therapy programme. This opened a new anxious period as we faced the uncertainties of treatment. The odds of it being successful were low and that fact was simple enough, some chance is better than none. However the expected side effects varied with every breath of testimony from a pool of people. I appreciated talking in person to two people who had undergone treatment, and while their stories were daunting, I felt encouraged because they had endured the difficulties and could look forward again. When I thought I was prepared for a worst case scenario and didn't get it, well, I wasn't disappointed, but it kept me wondering when and

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I entered the programme with welcome and appreciated support from the FMC clinic. Most importantly my family gave the best help with understanding and patience. Being almost free of concerns such as employment, and other performance related activity was a great relief, as they, with family matters, all surely combine as serious dynamics on one's ability to cope with what is happening. Mine is not a tale of woe. Rather, the experience was mild compared to some, perhaps most, and yet it wasn't easy by any means, so it underscores the testimonies of people who have struggled with circumstances and the side effects of treatment. It is only now, after the programme, that I properly realise my own state. These things were noticed, in varying degrees of severity, while on combination therapy:- Mild moodiness and melancholy (but aware of greater depths just below a fragile will), hair loss, hair thinning, dry mucus membranes, - eyes, throat, skin, nose bleeds, irritable cough; persistent itchiness on various areas of the body, headaches, body aches, sweats and chills, body heat, weight loss, sleeplessness, confusion (especially in communication), sudden mental and physical lag and onset of fatigue, and whatever I was prone to normally seemed amplified. Some of these things were cyclical with the medication, eg. Interferon injections on alternate days meant: bad day / not so bad day / bad day / not so bad day, and so on. Some side effects were constant, while some grew over time. Some ills were managed with medications, some by lifestyle adjustment or other methods. Mostly it became a discipline of self awareness, knowing when to shut up, to lie down, to apologise, believing it won't always be like this. The daily reminders of having Hep. C pass. The constant discomforts, distractions and fatigue grew over the months, adding to a condition of malaise that was only fully appreciated when the medication stopped. It was then, after the therapy programme stopped, over the subsequent weeks, I felt the daily advantage of feeling better (than the day before).

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Four months later, being Hep. C positive is a thought that only visits occasionally but it doesn't hold the power that sparked so many emotions at first. I fell in with the odds when the therapy didn't clear the virus, and I feel like my old pre - treatment self. Now another walk is before us. The past 20 years have been a hard trail to hike, only to find now I've had a (Hep.C) rat in the pack all along, and the bugger has eaten into my cheese box, and crapped in my wine skin. Perhaps, as with many things in our lives, we'll adapt, give it a silly name, and walk on. Alex

Hi every one, I have recently finished the combination therapy (interferon/ribavirin) and would like to share my experience with you. Prior to starting I was extremely nervous of the effect on my life, both physically and mentally. You read and hear a lot of things about this treatment and mostly not rosy either! I also decided it was time to deal with it emotionally and did quite a lot of work on myself. I finally removed the guilt, shame, frustration and anger of having hep C.

Towards the end I lost quite a lot of hair, which was a little stressful, although it has not taken long to thicken again. The worst side effect from the medication is the depression that you can experience. I recommend to anyone who has suffered from or begins to feel low to see your doctor early in the treatment. I also found it difficult to cope with too much, so plan for “time out” and make sure you have someone you can talk to when things are not going well. If you are going to the Flinders MC, there is a lovely clinical nurse there who makes all the difference! So, six months go by and I have my PCR test, I expected it to come back positive and guess what It’s Negative, yes that’s right. It is now undetected and it took quite a while for those words to sink in. I just couldn’t believe it. I was fortunate to have genotype 3 which has a good response ratio. However, they are working all the time on new trials and I hope that some day real soon they find a treatment that is effective for all types. So, if you are considering treatment, I say go for it. What have you got to lose? I would like to thank all of the Hep C Council staff for their support and also my wonderful team of doctors whom have helped me to recover with a new lease of life! Keep smiling. ☺ H from South Aussie

After 15 long years, I finally had accepted myself and felt worthy again. The discrimination that goes with it no longer got to me as much. This is important in order to gain benefit in the total healing process. For anyone with children, do not let this perturb you from treatment. They cope with it better than we think they will, as long as you forewarn them. Full time work was a bit difficult to maintain. Dropping a day or two is the way to go if you can arrange this. During the six-month treatment I was fortunate to only experience minor side effects like the initial flu-like side effects and headaches. These eased off rather quickly and I only had the fatigue to deal with.

Hep C and Me Two angels in blue jeans The night I chose white Some say you play, You pay There are no winners Though others call call us sinners

Sandra

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Resource list Hepatitis C Information packs contain a Contact booklet, pamphlets and membership form in a small sized envelope.

Information Sheets Liver Biopsy Combination Therapy Genotypes Fatigue Facts Hepatitis C in Australia - A Snapshot Cirrhosis Pegylated Interferon

Support Group Transcripts Testing & Hepatitis C - Dr Robina Creaser Women and Hepatitis C - Dr Jo Thomas Acupuncture and Hepatitis C - Lynn Lobo Lesbians &Hepatitis C (Conference paper by Gai Lemon)

Publications for Health Professionals Hepatitis C - The Facts Dental Health and Hepatitis C Hepatitis C - A Management Guide for GPs Australian Hepatitis C Chronicle - Quarterly publication of the Australian Hepatitis Council

Hep C Council of SA Resources Hepatitis C Council of SA Inc - Council services Support Group GuideC Talk - Positive Speakersâ&#x20AC;&#x2122; Program Hepatitis C !- What does it mean? What is Hep C - Indigenous What is Hep C - Low literacy ABC Positive Hepatitis C & Disclosure Hep C - Women, Pregnancy and Babies Hep C - Dental Care Hep C & Sex Hepatitis C & Injecting Hep C - Information for Family and Friends At Home with Hep C Hepatitis C Community News

Resources for CALD Communities Hepatitis C (Booklet available in Arabic, Bosnian, Chinese, Croatian, Filipino, Greek, Indonesian, Italian, Japanese, Khemer, Malay, Persian, , Thai, Serbian, Vietnamese )

Safe Injecting Information Spoonman - wallet sized booklet on safe injecting & hepatitis C. SAVIVE - (SA Voice for IV Education Pamphlet) Close Shaves (a streetwise comic)

Tattooing and Body Piercing Information Booklets - Produced by Australian Hepatitis Council Contact 01: Post-test Information for Hep C Preparing for Testing Women and Hepatitis C (temporarily out of stock) Health monitor Complementary and Alternative Therapies for People with Hepatitis C The Guide to Healthy Eating for People with Hepatitis C

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Hygienic Procedures for Tattooists Hygienic Procedures for Body Piercers Safe Piercing (postcard) Healthy Body Art (pamphlet)

Post cards Spread the Facts...not fear (test your knowledge on Hep C) Be Blood Aware

Hepatitis C Community News

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#20 Hep C Community News  

Quarterly magazine of the Hepatitis C Council of South Australia. Printed copies of this resource are available from Hepatitis SA - email ad...

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