C
Hepatitis
Community News #38 • December 2007
Awareness Week • Research Update 23/11/2007 11:53:59 AM
About the Cover As part of Hepatitis C Awareness Week this year, we ran a colouring competition through a number of metropolitan and regional public and school libraries.
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Freecall: Fax: Web: Email:
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1800 021 133 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au
We received piles of wonderful entries, which meant we had to get a lot of extra prizes for the talented kids who entered. We’ve printed a selection of some of the winning entries on the cover. Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
COLO OLIVURERIN! Prizes for the best entries! 2 Categories: • Ages 7 & under • Ages 8-12
STAFF
Name:
Manager: Kerry Paterson
Age:
Administration Coordinator: Lynn Newman
Phone:
Administration Officer: Megan Collier
Address:
Info and Support Line Coordinator: Deborah Warneke-Arnold
Hand in your entry to the library.
Info and Support Line Volunteers: Fred Steve Lyn Will Mark Judy Anne Debra Janette Annette Michele Wendy
Closing date: 14 October, 2007 Winners will be notified by 31 October ss Week 2007 • of South Australia for Hepatitis Awarene • Produced by the Hepatitis C Council HEP ABC (1300 437 222) • patitisaustralia.com or ring 1300 • Hepatitis C: Learn the facts at www.he
Judges’ decision will be final
Coordinator of Education Programs: John McKiernan Rural Education: Leslie Wightman Metropolitan Educator: Nicci Parkin Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Bee Phil My Phuong Lyn Dean Justin Publications Officer: James Morrison Librarian: Joy Sims
BOARD
Contents Research Update 5
Hep573: A trial
6
Confusion in the Riverland
7
Looking at Hep C Councils
10
Drama: Painless education
13
The Community Response to Hepatitis C
Plus! 1
Introduction
2
Awareness Week in Pictures
4
The Future?
Secretary: Carol Holly
12
Chopped Liver
Senior Staff Representative: Kerry Paterson
14
Meeting Reg
14
Fred’s Story (Part 2)
16
Council Projects
Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson
Ordinary Members: Pamela Hanson Kristy Schirmer Anthea Krieg Lisa Carter
Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Council members and the general public. “Look at these people, these human beings; consider their potential! From the day they arrive on the planet, blinking, step into the sun, there is more to see than can ever be seen, more to do than... no, hold on. Sorry, that’s The Lion King.”
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A quick introduction to the contents of this issue Student Research Projects Each year the Hepatitis C Council of SA welcomes a number of students from a range of university and TAFE courses to undertake their student placements with us for either a day or for a number of weeks. We also welcome students who are interested in undertaking research projects involving hepatitis C issues, either as part of their placement or for another aspect of their studies. We would like to introduce you to some of the students and their hepatitis C research projects that have been undertaken during the past year. The Council welcomes this interest from the next generation of health care professionals, and we thank them for their contributions to the hepatitis C sector. For more about this research from the people who undertook it, have a look at pages 6-13. Above: Two enthusiastic supporters of Hepatitis Awareness Week wear their Oliver stickers with pride.
council news
Research! Awareness Week! Action Plans!
Awareness Week Hepatitis C Awareness Week this year was another success. It was launched with the premiere performance of Stephen House’s playing Meeting Reg, which Hepatitis Australia commissioned as a way to inform people about hepatitis C while entertaining them as well. Meeting Reg closely followed the SA tour of Chopped Liver, another play exploring life with hepatitis C. Information on these plays, and on the theory behind this kind of education, can be found on pages 10-12 and 14. Council staff and volunteers were also out and about around South Australia, helping our mascot, Oliver, explain some hepatitis C basics to the general public. See the photographic roundup over the next two pages. Next year’s Awareness Week will be much earlier in the year, in May. We’ll have more on this change in our next issue. Action Plan After a lot of waiting, and campaigning from the Council, it looks as though South Australia will soon get a hepatitis C state action plan. As we noted early in 2006, SA is the only remaining state without a hepatitis C strategy or action plan to co-ordinate and develop services for people living with hepatitis C. We hope to bring you more about the SA Hepatitis C Action Plan in our next issue. In the meantime, South Australian Minister for Health John Hill discusses it briefly on page 4. Hepatitis C Community News December 2007 •
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Hepatitis C Awareness Week in Pictures
(Below) From the Awareness Week launch: 1. Playwright Stephen House talking about Meeting Reg 2. Minister John Hill launches the week 3. HCCSA Board Chair Arieta Papadelos, Minister Hill and HCCSA manager Kerry Paterson 4. The crowd at the launch performance of Meeting Reg
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(Right) The lurid but eye-catching Radio Adelaide display on North Tce
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(Above) From Awareness Week: 1 & 2. Oliver spreads the word in Rundle Mall 3. Oliver poses with camels and children at Semaphore 4. Oliver at Parliament House 5. A fluffy hepatitis C virus toy, used as part of our promotional efforts this year 6. Lots of fluffy viruses 7. Children queueing for Oliver stickers at the North Terrace train station 8. The fluffy-virus-starring media packs waiting to be sent out (Right) Oliver hugs his way through the population of South Australia Hepatitis C Community News December 2007 • Internal Pages - Dec 2007.indd 3
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The Future of Hep C in SA? The Hon. John Hill, SA’s Minister for Health, launched Hepatitis C Awareness Week 2007 with a look at the state government’s plans for the future. This includes the longawaited Hepatitis C Action Plan! Here we present an edited version of his speech. The launch itself included the debut performance of Stephen Houses’s Meeting Reg. For more information, see page 12.
As Minister for Health, I have had the opportunity to learn a lot more about hepatitis C and I am pleased to say the SA Hepatitis C Action Plan, announced at last year’s launch, is nearing completion. The plan addresses key issues, including: • prevention of new infections, • increasing the number of people accessing treatment; and • paying attention to high-risk groups such as Aboriginal people. This plan builds on years of ground-breaking and creative initiatives carried out by the hepatitis C sector in South Australia. I would like to mention some recent examples of activities that are educating and enlightening people on this major health issue. Increased access to treatment is now being provided through community health services such as Nunkuwarrin Yunti and through drug and alcohol services such as Warrinilla. GPs and health service providers receive regular education updates on supporting patients with hepatitis C. A successful play, Chopped Liver by Ilbijerri Aboriginal and Torres Strait Islander Theatre, has toured SA, including rural areas and prisons, to raise awareness of hepatitis C among Aboriginal people. And this afternoon you have all seen Meeting Reg, a new play by Adelaide playwright Stephen House which explores how life choices can lead to hepatitis C. All these types of projects play a part in helping dispel the myths and stigma that often surrounds hepatitis C. But let’s leave the myths to one side and focus on a few key facts. • Hepatitis C is the most commonly notified infectious disease in Australia. • Currently the rate of infection in South Australia is estimated to be 1.5%, which translates to more than 17,000 South Australians. Given how misunderstood hepatitis C often is and the discrimination and fear surrounding transmission, this year’s theme (‘Learn the facts!’) is particularly appropriate. ‘Learn the facts’ is for everyone. Those living with hepatitis C need the facts to take control of their health and receive the treatment and support they need. People at risk of contracting hepatitis C need the facts to enable them to stay safe and educate their peers. And everyone needs the facts to challenge negative judgements and stereotypes and support people living with, or at risk of contracting, hepatitis C.
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Hep573 A trial of complementary therapies (Huang Qi) and Curcumae rhizoma (Jiang Huang). The antioxidants included Vitamin C, zinc, alpha lipoic acid, selenium, green tea, grape seed extract, and turmeric. Milk thistle has been known to create some gastrointestinal problems such as nausea, bloating and diarrhoea, headaches and skin reactions, but no significant side effects were reported and the trial preparations were well tolerated by all. It took significantly longer than expected to recruit people for the study. There were a number of difficulties, including interactions between St John’s wort and the selective serotonin reuptake inhibitor antidepressants (SSRIs). The necessity for a 12-week washout period from any herbs and vitamins was a concern for some people, and others who may have been interested in the trial were reluctant to take part in a trial with a placebo group. Eventually, 98 participants were successfully enrolled in the study. Ages varied from 22 to 75 years, and all participants had been affected by chronic hepatitis C for between 5 to 40 years. All participants had abnormal ALTs on three occasions in the past 6 to 24 months. The trial itself lasted 6 months, with another 6 months of follow-up. During each person’s initial visit, their viral load was measured and their genotype determined. Viral load was measured again after 6 months on treatment, and—as part of the follow-up—6 months after treatment concluded. Liver biopsies were not required, as ethics approval was unlikely to be given in a trial of unproven medication. Some participants noticed their ALT readings were the best they had been for years, and although all information from the trial has not yet been collated, already results are showing that some people have had a reduction in their viral load. ALTs have normalised in at least 20% of participants so far, with 77% of those being genotype 1. This is a very encouraging result for people with genotype 1 who
For more information: • www.ahrq.gov/clinic/epcsums/milktsum.htm • mcic3.textor.com/cgi-bin/mc/printabs.pl?APP=ISVHLD2006-abstract& TEMPLATE=&client=&keyf=0602&showHide=show
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may be reluctant to embark on interferon therapy due to the longer treatment period and the possibility of clearance being less than optimal Due to these positive findings, some people have sought access to the trial preparations so as to maintain their improved health, through the importer Phytomedicine. It is to be hoped that, since the trial is showing such good results, the preparation will be made easily available in the near future. The hepatitis C virus seems to be something that truly emphasizes the individuality in us all. The virus seems to affect each person in a slightly different way. Symptoms vary greatly, affecting people’s lives in vastly different ways, and the progression of the virus differs for each person. Even the moment of diagnosis is such an individual experience. It makes sense that there needs to be a variety of ways to treat this virus, so as to fit into each person’s individual needs. Any research into complementary and alternative therapies is therefore potentially exciting and important. The results of the Hep573 trial are being collated in December 2007, and are anticipated with great interest. The more ways discovered to deal with the effects of hepatitis C, the better for our whole community. Anne Jackson
Saint John’s Wort
St John’s wort image reprinted courtesy of the National Agricultural Library, ARS, USDA
Over the past 10 years there have been constant improvements in the conventional interferon therapy for hepatitis C. Side effects are now being realistically approached. Taken once a week, pegylated interferon has eased some of the difficulties associated with administering treatment, and the introduction of combination therapy using ribavirin has improved relapse rates. However, for many people affected by hepatitis C, conventional interferon therapy is still not an option. It’s estimated that 264,000 people in Australia have been exposed to hepatitis C, but only 10% have accessed interferon therapies. The reasons for low treatment uptake can be many and varied, including concern about the possible side effects, and (for some people) the long and often stressful treatment regime may not be suitable for their present lifestyle. The possibility of not clearing the virus after such a long and often difficult treatment period is also a strong deterrent for many people. The news of trials being conducted in alternative treatments is therefore always very welcome to the hepatitis C community. The Hep573 trial is one such study. It was conducted in three hospitals in NSW: the Royal Prince Alfred, Westmead and the John Hunter hospitals. The study aimed to discover whether the antioxidants chosen for the study were effective and safe in the treatment of chronic hepatitis C, whether milk thistle is best used alone or in combination, and to identify whether milk thistle and antioxidants were more or less efficient depending on genotype. There were three groups to the trial. One group of participants took a placebo, another was given silymarin (a milk thistle derivative) alone, and the third group took a combination of milk thistle, St John’s wort, other antioxidants, and traditional Chinese medicines (TCM). The TCM used were Andrographis paniculata herba (Chuan Xin Lian), Astragali radix
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Confusion in the Riverland Hepatitis C Awareness Amongst the Renmark Population A study by Ron Jones, Ben Fry and Andy Primeau of the Flinders University School of Medicine, undertaken as a project of Regional Community Week, 22-26 October, 2007. Aims The aims of the project were to investigate community awareness of hepatitis C amongst the general population within the regional community of Renmark. We also hoped to assist the Hepatitis C Council of South Australia to develop strategies to increase awareness of hepatitis C in regional communities. Methods The survey consisted of 11 questions with the possible answers being ‘true’, ‘false’ or ‘unsure’. The survey was conducted via convenience
sample in the community of Renmark. A sample size of 90 was obtained. Results were compiled and analysed as separate questions and total aggregated responses. Discussion The study conducted was of limited size and the selection process was not randomised as it was done during the day at a shopping centre and health clinic. However, it clearly demonstrates a level of confusion in the community of Renmark regarding hepatitis C. In particular, people were unaware of the potential long latency of the disease, the fact that there is no vaccine, and the fact that there is an effective treatment.
to increase public awareness of the facts surrounding hepatitis C. For example, media campaigns, brochures and/or posters at health clinics and high school. Education could also be targeted at high risk populations, such as IV drug users, prison inmates, tattoo parlour patrons, and those who have received blood products prior to 1990. By increasing community awareness, both the incidence and morbidity associated with the disease can be reduced.
Recommendations Our results suggest that more community education is required
Ben Fry, Ron Jones and Andy Primeau, with Renmark in the background
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Making Hepatitis Councils Work Professionalism, effectiveness, and getting to grips with the third sector Through 2005-2006 the Hepatitis C Council of South Australia took part in a social research project, An Ethnographic Study of Hepatitis C. The project utilised ethnographic methods to explore the growth and change of the organisation. This involved observing, participating and interviewing the staff and volunteers of the Hepatitis C Council of South Australia. The Hepatitis C Council began when a hepatitis C-positive clinician advertised a public meeting for those affected by the condition. This meeting took place in 1993, and uncovered a group of individuals who were seeking information and support regarding hepatitis C. This group, in conjunction with several supportive clinicians and healthcare workers, developed into what is now known as the Hepatitis C Council. From its inception two distinct roles were established and these remain fundamental to the Council’s operations today: effecting political change and providing (and advocating for) accurate information and support for those affected by hepatitis C. Development of written resources containing accurate information was, and remains to this day, a priority of the organisation. In the early stages, people’s living rooms were used to develop resources for sending to individuals requiring information. In late 1994 the Council became incorporated. It began a phone counseling service, held information meetings, produced a community newsletter, and formally established a governing committee. As the demands on the Council, and its workload, grew, it moved to its first official office. Here it shared the premises with a project for homeless children, funded by a local charity. This move, in conjunction with the appointment of its first paid employees, occurred in 1996. Funding was received by the State Health Department through money allotted for HIV/AIDS.
Gemma Carey
This funding grant from the government enabled the Council to develop and stabilise its infrastructure and build upon the foundations laid by volunteers. This new office provided a further degree of professionalism for the Council: it now contained an interview room to allow individuals affected by hepatitis C to seek information and advice in private. One of the first Council newsletters proudly boasted of its new premises that it offered a place “where volunteers can come to lend a hand with the newsletter, a mail-out, or with anything that may require an extra hand now and again”. As the Council continued to expand, it soon outgrew its first office and, around 1997, the organisation was given a room at the rear of one of the state’s drug and alcohol service’s premises. In 2001 the Council finally received a building of its own. This, in conjunction with the erection of signage, raised the visibility of the Council as a community organisation. During this time the Council was funded to provide information and education on hepatitis C to the public. It also provided support groups, referral and advocacy for those affected by hepatitis C. The telephone line still represented the Council’s main contact with those affected by hepatitis C. At the time the research project was conducted the Council was undergoing a significant transition in terms of who worked in the organisation, and the scope of the work the organisation undertook. In the past, the Council drew their volunteers from within the affected community. However, recently it has opened up volunteering to the wider community. In term of the Council’s work, previously the organisation predominately concentrated on working with people post-diagnosis. More recently, it has begun to undertake Continued over page...
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A Closer look at the Third Sector Here Gemma is interviewed about what ‘the third sector’ really means, and how it works. “The third sector is a term that’s used to refer to organisations which are not part of the government or corporate sectors. Third-sector organisations tend to be non-profit, community-based or volunteer organisations, although the term is used to describe quite a wide variety of groups. “In recent years, there has been considerable debate about how these organisations should work with governments and community groups. Increasingly, third-sector organisations are forming partnerships with government and market sectors. The partnership model offers considerable potential for the growth of community organisations as it enables them to access greater resources. “However, some scholars and activists argue that third-sector organisations should stay at the ‘margins’, rather than form partnerships with government and so on. By this, they mean that organisations should work with disadvantaged groups at the margins of society, away from government, medical and market organisations which constitute the ‘centre’. “This is because many believe that this is the place where thirdsector organisations can do the most good. They can work with people which the government and market either can’t help, or are not interested in helping. Also, when partnerships are formed with other sectors, community organisations often end up being dictated the terms of the partnership, rather than mutual decisions being made. Some Australian researchers have advocated for selective and more equal partnerships between third-sector organisations and the ‘centre’. “However, for this to occur, third-sector organisations will need to evaluate their contributions and work in such a way that does justice to the type of community development and empowerment activities they undertake. This style of evaluation would be in stark contrast to the government’s economic evaluation of the third sector that currently takes place. “Through demonstrating their significant and worthwhile contributions, third-sector organisations will be able to bargain for more equal partnerships. Naturally, this is easier said than done, and some scholars believe that sector-wide collaboration is required to unite and build up the third sector so that individual organisations may make stronger claims when negotiating partnerships.” prevention work as well as work with organisations who come in contact with priority populations. These changes have both positive and negative implications for the Council and the work that it does. Consequently, they have been a source of tension within the organisation. Tensions were clustered around four main areas, as listed below: 1. Expertise in the organisation 2. Who to work with, and how 3. Creating a space where people can be cared for
the affected community. This has created a dilemma: as the Council grows it needs skilled workers to run and manage it; however, as a community organisation, there is also a strong desire to keep affected community members integrated. Some workers were also concerned about whether or not people from outside the affected community would truly understand, or be invested in the organisation, in the same way as people from the affected community. Indeed, research suggests that the sources of trust and solidarity within community groups stem from the belief that these people have common problems, social identities, opportunities and perhaps futures. Reducing the number of volunteers drawn from affected community has also resulted in a decline in the use of identity politics within the organisation. Identity politics is the use of identity in delivering health messages: for example, an organisation may use hepatitis C-affected people to provide information to people at risk, or also affected, by hepatitis C. This is aimed at making information less threatening. By treating hepatitis C as a normal part of life and showing that hepatitis C positive people can work and function, the Council aims to undo the stigma associated with the condition. Because normalising hepatitis C is fundamental to the organisation’s mandate, the decline in the mixing of identity politics and service delivery has caused concern for some staff and volunteers.
4. Boundaries between workers Each of these areas presented a dilemma for the Council and the people who work there. Dilemma 1: Expertise in the organisation As the organisation has grown and taken on larger amounts of funding and new roles, there has been a need to attract people with a professional background to run and manage the Council. However, people with this background may not necessarily come from within
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Social movements with a strong sense of identity are well positioned to effect political change. Through the mixing of identity politics and service delivery, the Council is able to begin to build a collective hepatitis C identity which in turn may serve to reinforce the work of the Council through political recognition. Dilemma 2: Who to work with, and how? Previously, the Council focused on people affected by hepatitis C in the community. Recently, they have expanded their role significantly and begun to work with organisations and institutions who regularly encounter priority populations. This is a point of contention because when the Council was first established in the early 1990s, the affected community members who came together to create it were concerned with establishing an organisation for the support of people affected by hepatitis C, after diagnosis. In the early days of the Council this often took the form of one-on-one support, either through the support-line, in face-to-face interactions or volunteer positions. Although this kind of support is still offered by the Council, it has begun to decrease in favour of larger projects outside of the organisation, involving a wide range of people, not just affected community, and more prevention-based projects. So what does it mean to be a community organisation, and what should you do if you work in one?
Should you work with people in your affected community groups? Alternatively, should you have as broad an impact as possible across all groups? There are, however, benefits in placing resources and energy into education and community development and empowerment activities outside of Council walls. For example, workers feel that their time is used more productively and that the new direction has enabled them to feel that they are making a broader contribution to hepatitis C awareness. This shift has been precipitated by the practical limitations associated with identifying and working with people affected by hepatitis C; such individuals are dispersed and often do not identify hepatitis C as a ‘commonality’. Dilemma 3: Creating a space where people can be cared for. It’s always been important to the staff and volunteers at the Council that the organisation is a place where people can come and receive support, care and information. As the organisation changes, this affects how affected community might come to the Council for care and support. At the time this research was conducted, some workers were concerned that there was no longer a space for community within the organisation. As community organisations grow and develop, they begin to occupy different types of physical spaces. The Council has shifted from being a drop-in community organisation, to one which workers describe as being more professional. However, this has implications for who comes to the organisation for support and care, and who feels comfortable approaching it. While the new look may be approachable for other organisations and institutions, this is not necessarily the case for people from the affected community. Dilemma 4: Boundaries between workers Both staff and volunteers at the Council discussed that in the ‘early
days’ of the organisation, workers and work were not divided into sections. When work needed to be done, whoever was around would help—manager, staff member or volunteer. This gave the organisation a more informal, grass-roots atmosphere. Workers at the Council explain that previously the size of the organisation and its building meant that both space and work were constantly shared. This small space was conducive to informal discussions, and the ‘workshopping’ of ideas. Workers felt that the workspace of the current Council means that they are now divided into sections, which are relatively separate from one another. Decisions which once involved all workers are now more likely to be made separately by individual teams or sections within the organisation. This raises issues for the Council regarding community integration, and how important it is for a community-based organisation. The informal collaboration, which occurred when there were fewer boundaries between workers, was important for the grass-roots environment of a community organisation. As this informal collaboration and integration diminishes, some workers fear that the Council is at risk of losing its sense of community. However, this is not a wholly negative development for the organisation. Through the development of boundaries between workers the productivity of the organisation has been enhanced. However, the benefits of increased focus and productivity need to be weighed carefully against the negative consequences boundary formation has for the incorporation of affected community into the organisation. Gemma Carey Gemma’s thesis and report are available to be read from the Council’s library. Her article based on this research, ‘Conceptualising the Third Sector: Foucauldian Insights’, will be printed in a forthcoming issue of Third Sector Review. See more by Gemma on page 13. Hepatitis C Community News December 2007 •
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Painless Education A look at theatre as a tool for teaching people about hepatitis C I am currently doing a student internship at the Hepatitis C Council of South Australia. This placement is a part of my Bachelor of Health Sciences/ Bachelor of Social Sciences double degree with the University of Adelaide. As a part of the Bachelor of Health Science, I have undertaken a Public Health Internship, and this is what has brought me to HCCSA. Public health is essentially concerned with health on a population basis. Often public health initiatives will work with specific target populations in mind. Population groups can be defined by (but not limited to) age, gender, socio-economic status, indigenous background, occupation, ethnicity, exposure to a particular environment or climate, or levels of community and family support. Health promotion in these target groups usually follows a framework of advocacy and enabling, to make political, economic, social, environmental, cultural, behavioural and biological factors favourable to health and ensuring equal opportunities to health, and mediation, to coordinate actions by governments, health, social and economic sectors, NGOs, industry, professional and social groups to produce these favourable conditions. A large proportion of public health is community-based, using geography or some other defining character. Community-level public health is, in essence, focused on social and cultural perspectives and factors, and how these factors contribute to health.
Over the past four months I have been doing some qualitative research for HCCSA on the effectiveness of theatre as a tool for educating and health promotion for hepatitis C. Specifically, the research was based on the health promotion project Chopped Liver, a ‘Blak’ comedy written by Kamarra Bell-Wykes and presented by the Victorian-based Ilbijerri Aboriginal and Torres Straight Islander Theater group. The performances were aimed at indigenous audiences. However anyone could come to see the play. The play featured two indigenous characters, and followed their story of contracting hepatitis C. The play ran for two weeks in August and September 2007, reaching diverse audiences (including prisoners) in both metropolitan and rural SA. There were two specific aims in this research project. The first was to complete a literature review on past public health theatre projects to assess their strengths and weaknesses, and how these applied to Chopped Liver.
The literature review identified four main themes. The first of these was the ability of theatre projects to be highly successful in engaging audiences with limited literacy and numeracy skills. Because health promotion plays often use similar social situations to those in the audience (as Chopped Liver did), they provide a familiar medium that can diffuse feelings of educational inferiority. The second theme was the ability to foster collective thinking and action. The dynamic of participating in an audience as a group can mean that after seeing a play, discussion is generated within audiences that can lead to collective action to improve the health of the community. The third theme was the frequent use of plays to educate people about ‘difficult’ topics such as sexual health, drugs and alcohol. These plays allowed emotional safety in learning by letting young people to talk about character situations, not themselves. The fourth theme was the barriers that some theatre projects faced. There is a danger that by representing some negative social situations on stage, the plays may actually reinforce existing negative attitudes and behaviours. Responses to the survey were overwhelmingly positive. Three weeks after the play, most respondents could recall at least two of the intended key themes of the play, and there was a general uniformity in the interpretation of the play. Given the context of the plays, audiences responded to socio-political themes well, claiming that they were realistic and relevant to an indigenous setting. The political message of the play was interpreted as just as
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The second aim of this project was to assess how health and community workers who work with indigenous client groups rated Chopped Liver as an educational tool. This was done through the use of online surveys. From this, the project aims to contribute feedback to
HCCSA that can be taken into consideration for future theatre projects.
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These factors can include, but are not limited to, poverty, employment opportunities, food access and security, housing and shelter, violence and criminal activity, and social connectedness/ capital.
The HCCSA provides a service with the aim to lead the community response to hepatitis C in South Australia in several different ways. First, there are education and awareness campaigns that are directed at specific populations, and which contribute to prevention efforts. Second, HCCSA provides advocacy for affected communities. Third, it provides information and support for those affected by hepatitis C.
important as the health message. More specifically, the ‘Nunga’ and ‘deadly’ imagery, language and use of soundbites rated highly. These similar social situations made the play a more effective educational tool, as was supported by the literature review. One point that was not raised was the uniqueness of this method of education—not only because of its relatability, but because of the way it allows people to identify with content without being confronted personally. Even though people view these plays in a group situation, the messages and experience may be very personal. Building on this, the stories give audience members a literal ‘toolbox’ of narratives and ideas to talk about the issue afterwards. Many community health workers found that their clients had the confidence to talk about the issues surrounding hepatitis C after seeing the performances. The performances diminished the stigma surrounding hepatitis C. Despite this positive feedback, generally the community health workers felt that the performances were less likely to affect behaviours in relation to transmission (such as injecting drug use and unsafe tattooing). One respondent felt that change within the prison system was unlikely, because there were many other social factors that needed to be addressed in these settings. Despite this, the performances did have some positive impact on behaviours with audience members being tested. Two community health workers reported that some members of their client bases were seeking testing and treatment.
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One respondent said that, “I was approached by a woman after the performance, who had never disclosed her hep C status before, and she requested an appointment at our clinic to discuss the possibility of commencing treatment. We have also received three telephone enquires about the treatment clinic from people whose family saw the performance.” Now that is a positive outcome. Fiona Hill
See pages 12 and 14 for more about hep C on the stage. Hepatitis C Community News December 2007 • 11
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Chopped Liver: A Look at the Tour The Hepatitis C Council of SA (HCCSA), in partnership with the Aboriginal Health Council of SA and many other local Aboriginal health organisations, worked for many months to bring an exciting new play, Chopped Liver, to South Australia recently for a two-week tour around Adelaide, Port Augusta, Port Pirie and Murray Bridge. With the support of the Department for Correctional Services, Chopped Liver was also performed in three prisons: Adelaide Women’s Prison, Port Augusta Prison and Mobilong. Chopped Liver, by talented writer Kamarra Bell-Wykes, is a ‘blak’ comedy which follows the lives of Lynn and Jim for a number of years, from their teen years, through the risky exploits of Melodie Reynolds and Isaac Drandich in Chopped Liver
young adulthood (which included exposure to the hep C virus) to the responsibilities of marriage and parenthood. Melodie Reynolds and Isaac Drandich, from the Ilbijerri Aboriginal and Torres Strait Islander Theatre Co-operative, were exceptional in the two lead roles, as comments from audience members demonstrate: ‘Had me believing you were really married and presenting your own story.’
‘An unforgettable performance–I was captivated from start to finish.’ ‘This play is really educational but, at the same time, hilarious.’ ‘Deadly! A strong performance. [It] really got to me. Your message was strong.’ The production was excellent, with simple but effective visuals and sound effects to provide the context for the characters to move between their country and city locations at different stages of their stories. PJ Rosas from Ilbijerri was in charge of these effects, and demonstrated his calm determination and tour experience in overcoming unexpected hitches, such as flight damage to technical equipment, to get the show on stage in a variety of venues. Lisa Maza, the tour manager, was also fantastic in providing support to all the Ilbijerri team during the tour, and liaising with all the SA organisers. The South Australian tour was launched at Tauondi College by Che Cockatoo Collins, who acknowledged the shame, fear and stigma surrounding hepatitis C in both indigenous and nonindigenous communities in his speech, and who reinforced a key message of the play: that ‘it is important for our mob to learn the facts about hep C and not be in fear of our brothers and sisters who have been infected with this virus’. John Harvey, general manager at Ilbijerri, and Kylie Belling, the artistic director, also made it over to Adelaide for the SA launch, and were well pleased with the response to the play from the Adelaide audience, which included a number of local Kaurna elders. There were 12 performances in the two weeks of the tour. Over 500 people saw the play, with around 70% of audience members being from indigenous communities. Leslie Wightman, John McKiernan and Nicci Parkin from the education team at HCCSA also
toured with the play to be on hand to answer any questions about hep C from audience members. Clinton Dadleh from the Aboriginal Health Council of SA joined the HCCSA educators on the road to regional areas. From audience members: ‘That was too deadly. This is just what our people need to get greater understanding.’ ‘Great to see a play set in a Nunga way of doing business.’ ‘Was really good to see our people talk about hep C and know its affects on our families. More people should take notice.’ ‘That was fantastic! You should do a second tour, so we can tell everyone about it and they can see it.’ ‘Awesome play! Need more of the community to see this.’ Clearly, these comments suggest that Chopped Liver was very effective in raising awareness of hep C and its impacts in communities, and that many were keen to have others see the play too. Perhaps we can convince funding organisations that a second SA tour of Chopped Liver in the future is well worth while! The Hepatitis C Council of SA would like to thank the Australian Government Hepatitis C Education and Prevention Initiative, the Aboriginal Health Division of the SA Department of Health, and Nunkuwarrin Yunti for funding the tour, as well as the many other Aboriginal organisations who supported the tour by providing a ‘feed’ after the show. We would especially like to thank the members of the organising committee for the SA Tour: Clinton Dadleh, Christian Wilson, Paul Newchurch, Jaimie Cripps, Rachel Abdullah, Renae Porcelli and Diat Alferink.
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The Community Response to Hepatitis C The community response to HIV/AIDS created a framework which has guided and informed the hepatitis C response. The HIV/AIDS epidemic demonstrated the need and effectiveness of community participation and community-led action in reducing the impact of infectious disease, both in terms of prevention and support. The close affiliation of the HIV/ AIDS and hepatitis C epidemics has stemmed largely from their first recognition close together in time; hepatitis C became established as a serious public health concern relatively soon after the discovery and spread of HIV/AIDS. There are also shared characteristics which have encouraged comparisons between the epidemics: both are blood-borne viruses that spread through behaviour considered to be ‘high-risk’, and both affect marginalised sections of the population. This association has shaped hepatitis C strategies, policies, and funding throughout its history. This close association of the two epidemics has had both positive and negative effects on the hepatitis C sector. At times it has been beneficial due to the high-profile nature of HIV/AIDS. However, hepatitis C has also been subordinate to HIV/AIDS in terms of political attention and funding, despite its higher prevalence. Structurally, the hepatitis C response has persistently been attached to HIV/AIDS. At a federal level, and in many states, hepatitis C is grouped under ‘HIV/AIDS and related diseases’. This association is grounded in political sentiment, rather than etiological association. Although the HIV/AIDS response acted as an important forerunner for hepatitis C in the early 1990s—whereby peer education, community agencies and advocacy were established as effective measures to combat the effects of infectious disease—for the most part HIV/AIDS affected a cohesive community group who were well positioned to
assert collective action. The gay community in Australia was instrumental in raising awareness, and in education and prevention measures, along with providing support to those who were directly affected. Those affected by hepatitis C are not well positioned to replicate this level of collective agency. The virus affects disparate and often marginalised sections of the population, who often share nothing in common aside from a diagnosis. While the disease is common in those currently identifying as injecting drug users, many people affected by hepatitis C may have contracted the virus decades earlier and no longer identify with this lifestyle. In comparison to HIV/AIDS, this has made a community-led response more difficult to organise. As with the beginning of the HIV/AIDS epidemic, the start of the hepatitis C epidemic was characterised by the absence of a national response. This resulted in increasing isolation for the people who had been affected by the condition. The provision of contradictory and inaccurate medical information further compounded this sense of isolation and confusion, both in the general public and amongst medical practitioners. In the face of government inactivity and widespread confusion concerning the aetiology of the disease, small groups of hepatitis C-affected people began to come together to assert collective action. As a result, hepatitis C councils began to emerge around Australia
in the early 1990s. Establishment of these councils occurred first in the eastern states of Australia, and resulted in each capital city having a form of hepatitis C council by the conclusion of 1995. It is worth noting that some councils around Australia are not designated as specific hepatitis C councils; several are general hepatitis councils, and others are combined with HIV/AIDS. During 1996, a national council was established to provide a peak representative body—the Australian Hepatitis Council (now named Hepatitis Australia). Today, many of these councils retain the features so dominant at their conception, such as the presence and influence of those directly affected by the virus and the utilisation of volunteers. The workforce of many of these councils has also grown from a small group of directly-affected individuals and interested health professionals to include a more diverse range of people. Similarly, the growth of hepatitis C councils has seen the preservation of many of the original roles, in conjunction with the acquisition of new responsibilities. Increasingly, their core business has become intertwined with the objectives of state and federal governments. Currently, hepatitis C councils in Australia are a conglomeration of many of the features of a selfhelp group, a pressure group to advocate for increased funding and research, a service provider, and an expert group intervening in public debate. Gemma Carey
Information presented by Professor John Kaldor (of the National Centre for HIV Epidemiology and Clinical Research) in Adelaide on 12 November, 2007. Hepatitis C Community News December 2007 • 13
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Meeting the Sources of Reg Stephen House on the story behind his play Acclaimed Adelaide playwright Stephen House created the wonderful play Meeting Reg as the centrepiece of this year’s Hepatitis C Awareness Week in SA. Here he discusses some of the background to his script. I did a lot of research in leading to this project. My strong belief is that art can go some fabulous lengths in health promotion messages. When Kerry [Paterson, then of the Australian Hepatitis Council] and I first spoke in early 2005, we discussed the possibilities for creating theatre that would share important stories and messages surrounding hepatitis C, and we both became very excited by the concept, and what theatre could do to raise awareness about hep C. It was very exciting to me to receive this commission, and it was also very challenging and, I have to admit, a little bit scary. I felt a certain obligation to represent the importance of this issue in the very best way that I could. There were some hiccoughs with the first draft, which there were always going to be, because of the issues. But we moved on from
there with a second draft, and on towards production. I would really like to thank those people who are living with hepatitis C, and who were willing to talk to me. I must say that they are the best. I had some amazing conversations with some incredible people who are brave, courageous, talented in every aspect of the human condition, and I promised them my confidentiality. I had
fish and chips at Semaphore and cups of coffee and walks along the beach and I went to people’s houses and was welcomed into people’s lives as I began to create this play that I thought would best do justice to them. Unfortunately I can’t, of course, name these people, but for me they remain the most important people in the chain that put this play together.
Meeting Reg being performed at the Bakehouse Theatre
Fred’s Story (Part 2) A personal look at working with people affected by hepatitis C Linda McInnes of the Australian Hepatitis C Support forums talked to Fred, a worker at the Council, about his experiences with hepatitis C. This interview continues from our last issue. Let’s look at your volunteer work with the Hepatitis C Council of SA. You are a peer educator, and you visit drug rehabilitation centres. Can you tell me about this role? Sure. I really enjoy my role in that work—I find that I relate to the people and can often pass on some vital information. It can be
quite surprising that the level of knowledge about transmission of blood-borne viruses among injecting drug users who might share equipment is sometimes quite low, especially among the young people who inject drugs. So I find it a vital role, and I enjoy doing it. You also co-facilitate a course called ‘Living well with hepatitis C’, which is run through Relationships Australia. Could you tell us a bit about this? The ‘Living well with hepatitis C’ workshops I find are very helpful, especially for people who were actually struggling with their health
with hep C. Some people may find it to be basic stuff, but it’s giving people tips and clues to help manage a chronic illness. It gives people strategies for dealing better with most areas of their lives, like chronic fatigue, depression, interacting with health care professionals, and so on. The courses run for six weeks—each weekly session runs for two and a half hours. The workshops are run through MOSAIC, which is a part of Relationships Australia SA. MOSAIC has counsellors who deal with all issues to do with hepatitis C and HIV. The MOSAIC
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counselling team are just fantastic, and we refer people to them from the Council quite often. What do you think is the future, in regards to hepatitis C? I think it’s quite positive. There seem to be quite a lot of scientists and researchers now on the job, looking to develop a vaccine and better treatments. With any luck the treatments will get a lot better, and we won’t have to rely on interferon at all. Although interferon is still the best thing we have at the moment, I believe that if one can use some other treatment that doesn’t have such serious side-effects, and just get away from interferon altogether, that would be great. Most importantly, I would like to see the existing services for people with chronic hepatitis C improved. I think there needs to be more practical support for people who advance to serious liver damage—perhaps something like a respite house where people can go for a week or two and have meals cooked for them and such. I feel that there’s a need to help some people to get away from the stresses of life and illness, even just for a short while. I believe it would
be very beneficial. I have observed people who have progressed to serious liver damage that seem to go downhill faster because the stresses of life are just too hard to deal with. Unfortunately the hepatitis C councils around Australia don’t have the funding to do much in that area.
quite realise that family members are trying to help. It’s not anger so much, but you wish people would just leave you alone. You feel like saying, “This is just all too hard for me to deal with, all your concern!” It’s difficult, and it sounds bizarre, but I’ve heard this reported so often. A European respite cottage
I just think that, especially for people on treatment who live on their own, or even people who live with their families that find it hard, if only we could have a respite house—in the country, maybe—and just go there for a couple of weeks or a month and have everything taken care of, a bed, nice food and a peaceful atmosphere just to get away from worries. I think that would be an incredible asset while you’re on treatment, and especially for people who are getting quite ill. That’s because, on treatment, stress can be the biggest, hardest thing to deal with—and all the more so for people who have progressed to serious liver damage. You think that family members aren’t coping with people who are on treatment? Oh I think it’s a very difficult thing. Relationships come under an incredible strain for people who are on interferon, and I think that for those people it seems as though it’s quite invisible in the beginning. There is an irritability that builds up, and even when people are trying to help, you can get quite angry and snappy at times and lash out. It’s very difficult for family and friends to support someone who’s on treatment where the person is actually very irritable and a bit confused—you sometimes don’t
Since your diagnosis, you have obtained quite a bit of knowledge about hepatitis C. Where did you get this information? The Hepatitis C Council, for sure. In the early days the knowledge was quite poor. I wasn’t really clear on the transmission routes and things like that, so I visited the HCCSA with a new girlfriend and they gave me every copy they had of the Hep C Review, the magazine that’s put together by the Hepatitis C Council of NSW, and I just soaked all that knowledge up like a sponge and just found that there was a desire to keep learning more. So then I started volunteering at the Council, and it’s been wonderful, actually. And I believe you also run a support group called ‘Calming the C’ at the Hepatitis C Council. The Council runs the group—I just kind of facilitate sometimes. But, yes, that’s a wonderful source of information too. It’s especially good for people considering doing treatment, and people who are currently on treatment. It’s great for them to share tips and ideas that they have found help get them through. I think it works well. I can’t imagine what life for people with hep C would be like without the hepatitis C councils. Hepatitis C Community News December 2007 • 15
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council news
Turning Point A hep C film by young people for young people “Young people experimenting with injecting drugs, using piercing equipment at home, or getting homemade tattoos are most at risk. At some stage in a young person’s life, these risky behaviours may become a reality for either themselves or for someone they know. “Getting the messages to them before that happens is critical. For instance, it has been shown that many initiates to injecting are likely to contract hepatitis C within the first few times of using.” The Hepatitis C Council of SA and the Youth About Changing Reputations and Adult Perceptions (YAC-RAP) youth team, in conjunction with Mt Barker & District Health Services, are developing this exciting health promotion initiative using a peerdeveloped resource approach. The participants are 11 young people from Birdwood, Heathfield and Mt Barker high schools, who are members of the YAC-RAP team, based at the Adelaide Hills
Community Health Service. They are working with Sonja Vivienne, an independent filmmaker, and the HCCSA education team to create an educational film for use in schools and youth agencies. This film is designed to promote harm reduction messages for young people, and links them to appropriate services who deal with hepatitis C awareness and issues of concern to young people. This film will provide a nonthreatening, engaging, and locally relevant way to provide the key messages that young people need to know. Accompanying the film will be an easy-to-use resource for facilitators and teachers which should prompt useful discussion points, and a take-away handout for distribution that reinforces the key messages and provides appropriate contact information. The film is due to be launched in Youth Week 2008. Nicci Parkin
Voki? Voki!
If you are hep C positive and you would like to share a quick message with others in a fun way, check out this tool—the voki!. Your identity will be protected. We developed it in the Learnscope ‘Narrative Technologies’ project. We are building a collection of them to test their usefulness. View the hep C voki collection at www.hepcstories.blogspot.com to see what others have done 1. Go to www.voki.com/ mywebsite.php. 2. Play the Welcome voki and the Tips On What to Say voki. 3. Choose Create New Voki, and the set-up instructions will guide you through. 4. Say something that you would like others to learn about hep C. If you have a plug-in microphone, your message can be up to 60 seconds long.
Provisional artwork for the film’s DVD release
5. When you have finished, choose Send to a Friend, and enter the email hepcprojects@hotmail.com. Use the message section to write your contact details (unless you would like to remain anonymous). 6. The Hepatitis C Council of SA will retrieve the voki and add it to the collection. Nicci Parkin
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Useful Contacts & Community Links Hepatitis C Council of SA Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. Call the Council’s Info and Support Line for information on (08) 8362 8443 or, for rural SA callers, 1800 02 11 33 (freecall). MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds. (08) 8223 4566 Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic. (08) 8223 5011
Clean Needle Programs To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340 Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809 SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 1699 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program. (08) 8447 8821 The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443. Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities. (08) 8362 0395 AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611
Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services. The Council offers a meeting room suitable for workshops, presentations, formal and informal meetings. It is a spacious area suitable for up to 30 participants.
Meeting Room Hire at the
The room has modern, self-contained kitchen and bathroom facilities. It also contains an electronic whiteboard, and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability). Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.
Community members affected by hepatitis C are encouraged to use the room at no cost.
Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au
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The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. A strong membership of people affected by the virus is essential to our work. Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071 or fax: (08) 8362 8559.
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