#29 Hep C Community News

Hepatitis C Community News Winter 2005

News and info

Latest news 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

Staff members Manager: Danny Gallant

Hep C Info and Support Line Coordinator: Deborah Warneke-Arnold Metropolitan Educator (Community Programs): Sharon Drage Rural Education and Support Officer: Leslie Wightman Information and Resource Coordinator: Elissa Mortimer Senior Administration Officer: Lynn Newman

Administration Officer: Megan Collier

Librarian: Joy Sims

Newsletter Editor: Fleur Lewis

In politics The Labor party has recently called on the Howard Government to get serious about the prevention and treatment of hepatitis C and deliver the funds which are so urgently needed in the area.

Hepatitis C is one of the most commonly diagnosed notifiable diseases in Australia, but a recent strategic review identified a lack of resources as a serious constraint.

As our readers may have noticed, we have had quite a turnover of Newsletter Editors over the past 12 months. We thank and sincerely appreciate all of the hard work of our previous editors in bringing the Hepatitis C Community News to the current standard. The council welcomes Fleur Lewis, the latest newsletter editor to join the HCCSA team!

Fleur has done an amazing job on the newsletter and we invite you all to give feedback on the Winter 2005 Edition.

Staff comings and goings Funding Fred, our much heralded HCCSA legend, has returned to volunteer with us after a much deserved break. Fred will be volunteering on the phone line as he did before he went away. We would like to wish him a very warm welcome back.

Gary Clarke and Michelle Morrisson have joined the Getting it Together project. See article on page 6 for more details.

Funding and budget submissions have been submitted for the following projects:

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The Getting it Together project

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The Rural Program

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HCCSA website development

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An awareness campaign focussing on hard-to-reach populations.

The HCCSA’s Hep C Info and Support Line has been expanded with the training of 12 new volunteers. This training has been provided by HCCSA in conjunction with the HHPP training team at Relationships Australia (SA) and will allow volunteers to achieve a Certificate 3 in Telephone Counselling Skills. Welcome to all of the fantastic new phone line volunteers.

Board members Chairperson: Vice Chairperson: Secretary: Treasurer: Manager: Ordinary members:

Leslie Dunbar Peter Underwood Fred Robertson Barbara Williams Danny Gallant Catherine Ferguson Fiona Bellizzi Barry Horwood Helen Ingham Marian Rich Dean Wilkins

2 • Hepatitis C Community News

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.

Submissions:The Hepatitis C Community News welcomes contributions from Council members and from the general public.

Hi! From the new editor My name is Fleur, and I am the new Newsletter Editor here at the Hepatitis C Council. I am qualified as a professional writer and also have experience in graphic design. As well as working for the HCCSA, I am also the Publications Officer at Relationships Australia (SA); my role there involves working on course guides and fliers and brochures for the Australian Institute of Social Relations.

Mosaic art project Page 15

Ultimately, though, my passion is editing and writing, and I am enjoying the position of Newsletter Editor very much.

Feature articles

This issue has a brand new look which I have developed over the past few months. I based the design concepts on the great work of Xanthe Kleinig, the Newsletter Editor for the Autumn issue, and it has been a pleasure to expand on her ideas and develop this newsletter to a new level. I hope you like what you see.

National Hepatitis C Awareness Week Page 2 Getting it Together Page 6

Since I arrived here, so many exciting things have been happening that there was hardly room to fit it all in one issue.

Sharon has been working on the Mosaic Art Project since 2004 and the results have been stunning. Some beautiful mosaic pieces have been created by groups of young people from around Adelaide, one of which is featured on the cover of this issue.

Future directions for the HCCSA Page 8 Tune Into Your Health CD launch Page 10

The Rural Program has a new project called Getting it Together which has also been achieving great things thanks to Leslie and her new team.

The CD for the Tune Into Your Health project was officially launched on April 14, and I was lucky enough to attend this highly entertaining event.

And then of course there was National Hepatitis C Treatment Awareness Week. It was great to see all the hard work and planning come to fruition. As the State Coordinator of Awareness Week, Elissa, with everyone who participated, made a huge impact on increasing awareness of changes to pharmaceutical treatment for people living with chronic hepatitis C. I hope you enjoy reading about these projects and the many other articles featured in this issue.

I look forward to hearing what you think about the Winter issue of the Hepatitis C Community News. Please email me at newsletter@ hepccouncilsa.asn.au with your comments, or write to PO Box 782, Kent Town SA 5071.

The Clean Needle Program Page 13 A day on the golf course Page 14

Regular features Sector worker profile

7

Dear Doctor

9

My story

12

Read it now

13

Service directory

15

Membership form

16

Fleur Lewis

Winter 2005 • 3

Editorial

Cover story

Hi everyone, welcome to the Winter issue of the Hepatitis C Community News!

National Hepatitis C Feature article

Awareness Week

National Hepatitis C Awareness Week was held from May 23-27 2005. It’s theme was ‘Get Hep C Free’, and the spotlight was on more effective treatments for hepatitis C.

The launch After months of planning and preparation, Awareness Week was launched at Tandanya Cultural Institute on Monday May 23 at 12.30pm. Showcased at the event were four of the mosaic pieces created as part of the Mosaic Art Project (see page 15).

Leslie Dunbar, HCCSA Chairperson, opened the event and acted as MC. Auntie Josie Agius, respected Gaurna elder, welcomed the visitors to Gaurna land.

Dr Rod Givney from the Department of Health then spoke about current issues, highlighting the importance of prevention methods such as clean needle programs, and discussing the need to improve services to those who are affected by hepatitis C and are marginalised and stigmatised.

He strongly encouraged people with hepatits C to discuss new possibilities of treatment, such as the improved combination therapy, pegylated interferon and ribavirin.

4 • Hepatitis C Community News

Officially launching the event was the South Australian Health Minister, the Honorable Lea Stevens. Minister Stevens discussed the issue of hepatitis C in a South Australian context; it is estimated that 1.5 per cent of our population currently have hepatitis C. ‘We must strengthen our efforts in prevention,’ the Minister said, ‘especially with people most at risk of hepatitis C infection.’

This important point was reinforced

by Dr Nick Williams, a GP working at The Parks Community Health Centre. He said that it was essential to improve empathy towards all people living with hepatitis C, whether they are injecting drug users or not.

Michelle Morrisson’s poignant speech about her own experiences with hepatitis C tugged at the audience’s heart strings. Michelle was receiving treatment at the time; she said that although it is a terrible thing to have to experience, it has been easier for her to bear because she was prepared and informed. She encouraged people affected by hepatits C to seek help, highlighting the importance of having a strong support network.

‘It is possible to get free of hep C,’ Michelle said. ‘Information is free.’

All of the speeches were enjoyable, informative and succinct. An afternoon tea of modern Australian food provided a chance for everyone to get together and discuss the topical issues that had been raised. Included on the mouth-watering menu was grilled barramundi seasoned with bush spices, kangaroo salami sandwiches and satays with quondong sauce.

A Hypothetical Evening What an amazing occasion to have such key members of the hepatitis C community and sector in the same place at the same time! HCCSA staff, board and community were joined by staff from various agencies for this event which took place on the Wednesday of National Hepatitis C Awareness Week.

This event provided the opportunity for participants to consider hypothetical case studies and pose questions to an expert panel.

Questions were led by our MC for the evening, the charismatic Dr Darren Mounkley. Other members of the expert panel included gastroenterology consultants Dr Hugh Harley and Dr John Ring; Dr David Shaw, Infectious Disease Consultant; Libby John, Liver Transplant Coordinator; Dr Jackie Coughlin, Medical Officer with the Red Cross Blood Service; Hoa Nguyen, Clean Needle Program Coordinator at the Vietnamese Community Association; Enaam Oudih, P.E.A.C.E. Multicultural Services Manager; Dr William Donohue and Dr Phouc Le Cong, both GPs working closely with people living with hepatitis C; Anton Colman and Robyn Tanti, two of the Clinical Nurse Consultants from the treating hospitals; Carol Holly, Manager of SAVIVE; Anne Bourne, Clinical Practice Leader of MOSAIC; and the HCCSA’s very own Rural Education Officer, Leslie Wightman.

South Australian Department of Health staff from the HIV/Hepatitis C Policy and Programs Unit joined us for this event and we welcomed three special guests from interstate for this function; Kerry Paterson from the Australian

Above: Drs David Shaw, John Ring, Darren Mounkley and Hugh Harley at the Hypothetical Evening.

Facing page: The Honorable Lea Stevens.

Hepatitis Council, and two staff from the Hepatitis C Section of the Commonwealth Department of Health and Aging, Florence Foo and Julianne Quaine.

These guests were very impressed to hear different views on the management of hepatitis C in the hypothetical cases. Panel members encouraged us to consider all of the different issues that a person living with hepatitis C would be facing when considering undergoing treatment. This discussion became broader than just the treatment issues though and encompassed discussions around disclosing to loved ones and workmates, liver transplant issues as well as cultural issues around liver biopsies.

Everyone agreed that this event was a great opportunity to learn something new and, as one audience member commented, ‘An enlightening panel of speakers and a wonderful diversity of ideas,’ made the evening a success.

Other events Information stalls were held at various locations around Adelaide, including hospitals and shopping centres, as part of Awareness Week.

These stalls were staffed by workers and volunteers, and were on all accounts a success. There were also unstaffed displays at Nunkuwarrin Yunti and the Second Story Youth Health Service.

An information session for health care and community workers was held on the Thursday of Treatment Awareness week at Dale Street Women’s Health Centre.

An update for staff involved in Clean Needle Programs was also held at the Hepatitis C Council in conjunction with Drug and Alcohol Services SA. Regional events were also held in Whyalla, Point Pearce, and Port Lincoln to improve awareness of hepatitis C in those communities.

From the coordinator Kerry Paterson was the National Coordinator of Awareness Week.

Kerry worked with the national

On a national level, Awareness Week was funded by the Australian Government Department of Health and Aging. Some states and territories also received funding from their governments, including South Australia which was generously supported by the SA Department of Health. Some sponsorship was also provided by pharmaceutical companies, which gave the campaign a breadth which would otherwise not have been possible.The basic resource packs were distributed throughout the state, comprising a poster and postcard and a variety of Council brochures. At the national level, a video news release was also created.

Each state and territory nominated a media spokesperson who had been through the treatment process and then participated in media training which was provided in Melbourne.

Michelle Morrisson was South Australia’s community spokesperson and made us all very proud because of her great efforts.

Onreflection,Kerryadmitted:‘It’s been asteeplearningcurveorganising thisfirstnationalawarenessweekin manyways.’ Shesaidthesuccessof thecampaignwasduetothefactthat, eventhoughresourceswererestricted, thehepatitisCworkforceacross Australiacametogetherfortheweek toorganisesomeexcellentinformation eventsanddisplaystopromote hepatitisCtreatmentawareness.

‘My hope would be that people with hepatitis C, and GP’s in particular, will have a better understanding that there is now a better treatment for hepatitis C,’ she said.

Winter 2005 • 5

Feature article

coordinating committee which was made up of a member from each of the Hepatitis Councils in the states and territories. In turn, each state and territory formed a local organising committee, to coordinate events for the week.

Feature article

Getting it Together In the last newsletter, you would have read about a new Hepatitis C Council rural initiative which aims to build and strengthen connections between rural South Australians affected by hepatitis C. This project is funded by a grant from the Commonwealth Hepatitis C Section, specifically as part of the Hepatitis C Education and Prevention Initiative. During the past three months considerable progress has been made and the development of the rural community network is well underway. The steering committee has named the project Getting It Together – Rural Community Action on Hep C.

Achievements so far

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The steering committee has been formed with members including: Michelle Morrison and Gary Clarke: Getting It Together community workers; Marion Rich: Primary Health Care Nurse, Woodcroft Community Health Service; Lynn Newman: Senior Administration Officer, Hepatitis C Council of SA; Claire Hose: Community Representative, Users Association of SA; Leslie Wightman: Rural Education Officer, Hepatitis C Council of SA; George Valiotis: Education and Training Project Officer, Relationships Australia (SA); Danny Height: Drug and Alcohol Community Worker, Barossa Drug and Alcohol Service, Drug and Alcohol Services SA.

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An advertisement promoting establishment of the new rural network for people affected by hepatitis C has been posted in all rural newspapers and sent via a range of networks.

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The first network meeting will take place on July 30 and 31.

Meet the Community Workers Michelle My name is Michelle Morrison. I won’t bore you by telling my story again, as many of you would have heard it at some point during Hepatitis C Awareness Week. I know I’m getting a little sick of me, so you must be too! I will just say I have just now completed my 48 weeks of treatment for hep C and am travelling well!

I became involved with the Council through my role as Community Spokesperson for Awareness Week. It was through this that I was drawn to Getting It Together. Although at this stage I’ve only been involved for a short while, I’ve already hit the ground running! We have a great team behind us. I’m feeling very enthusiastic and am very much looking Above: Gary and Michelle forward to the success of this project.

Gary I am Gary Clarke and I am one of the new Getting It Together project workers here at The Hepatitis C Council.

I have been working in the community sector for more than a decade now and in particular I have specialised experience with injecting drug users, or to use the more politically correct term, ‘people who use drugs illicitly’.

I am enjoying the challenge of becoming involved in the project in its inaugural phase and I look forward to being a part of it as it grows and develops over the next 15 months or so. Initiatives such as these that reach out and engage with our most important stakeholders, the affected communities, are fundamental to maintaining an effective response to the challenge of hepatitis C in our rural and regional communities in South Australia.

Despite the obvious limitations we face operating on such a small scale, I believe this project is a good idea whose time has come. Add to that a small but dedicated team willing to nurture that idea to fruition, it then augers well for any outcomes, be they planned or less intended. I am proud to be a member of such a team.

6 • Hepatitis C Community News

Meet

Robyn Tanti

Here at the FMC, my days vary and I always need to be ready for anything. I work 38 hours per week plus four hours of overtime.

I have two clinic days each week; on Wednesday afternoon I work at the Infectious Diseases Clinic, and on Friday afternoon at the Liver Clinic. Every week I also start, on average, one person on interferon/ribavirin treatment.

I try to fit in patient reviews, meetings and office time as well as being always contactable by either phone or pager. Quite a bit of my time is often spent on the phone talking to patients.

then to be able to tell them at the end that all their hard work has paid off and they have cleared the virus. It is also great to be able to give people information and make them immediately feel better because it is not as bad as they first imagined it to be. Knowledge equals power.

I am very excited about the coming year and hopefully as a service we can grow and achieve some great things at Flinders Medical Centre which will flow on to our patients.

As told to Fleur Lewis

Above: Robyn Tanti

New nurse to join the FMC hepatology team At the end of May, Rosalie Day joined the team at the FMC hepatology department. Rosalie’s position will involve drug and alcohol counselling, referrals and follow-ups as well as clinical trial work and clinical practice improvement activities. She will also be covering Robyn Tanti’s position while she is away on annual leave.

When I am not at work I enjoy spending time with my dog, a red kelpie named Pinot, and my family and friends. I love food, both cooking and eating it, and am always up for trying a new restaurant.

‘I often see people at their most fragile and it can be difficult to remain empathetic but not get caught up in their feelings.’

The hardest part of my job is dealing with people’s emotions – both those of patients and their families. I often see people at their most fragile and it can be difficult to remain empathetic but not get caught up in their feelings.

I am really fortunate that I work with a great team at FMC; I am always well supported by senior staff who help me to get through challenging situations.

I have to say that I do really enjoy my job and the best part of it is getting to know my patients and their families and friends. It is also very fulfilling to have supported someone through treatment and

creative streak?

Got a bit of a

We are looking for contributions of poems, stories and articles from our readers.

If you have anything you would like to submit get it to us by: • Email – newsletter@hepccouncilsa.asn.au • Mail – PO Box 782, Kent Town SA 5071 • or drop in to 3 Hackney Road, Hackney.

Winter 2005 • 7

Sector worker profile

Robyn Tanti works at Flinders Medical Centre (FMC) as the HIV and Viral Hepatitis Liaison Nurse (Clinical Nurse Consultant).

Future direction Feature article

for the HCCSA

About the Strategic Plan The Hepatitis C Council of South Australia (HCCSA) has devised its first Strategic Plan. The Strategic Plan gives the HCCSA a plan of action to initiate programs and projects which have been identified as high priority. It is hoped that the Plan will reinforce the priorities of the people who work at the HCCSA, and give clear direction to staff and volunteers regarding the aims of the organisation.

The Plan has been in the making since the middle of 2004. Staff, volunteers and board members were all involved in the process, which included a planning day and the creation of a mission statement and a vision statement. HCCSA members and interested members of the community were then invited to participate in a consultation on the draft of the Strategic Plan before it was finalised.

People who come to the HCCSA for support may well be unaware of any significant changes. The aim is to maintain and improve the services that are currently being provided without impacting on the nurturing environment already established within the organisation.

It is hoped that the strategic directions will maintain a sustainable future for the Hepatitis C Council of South Australia.

Leslie Dunbar HCCSA

Strategic Plan 2005-2008 hepatitis C including their families, partners, and carers

Our vision A society that cares for the health and wellbeing of people affected by hepatitis C and supports the end of the epidemic by acknowledging the link between health and social justice.

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Advancing healthy public policy, ending discrimination and eliminating barriers to equity and access

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Fo s te r i n g s u p p o r t i ve e nv i ro n m e n t s a n d partnerships

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People who inject drugs

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Young

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Homeless

Our mission

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In prisons or associated facilities

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Focusing any health responses on those most affected

To lead the community response to hepatitis C in South Australia through:

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Aboriginal or Torres Strait Islanders

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Promoting inclusiveness, respect, creativity and innovation

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Continuing into the future with professionalism, accountability and quality assurance

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Advocating for holistic health and support services that meet the needs of our focus communities.

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Education and awareness that targets focus populations and contributes to prevention efforts

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Advocacy, with our communities

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Information and support for those affected by hepatitis C.

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From culturally and linguistically diverse backgrounds

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Rendered vulnerable by medical histories or work place

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Living in rural and regional settings.

Our principles and values Our focus communities Are South Australians who are:

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Living with or at risk of

8 • Hepatitis C Community News

We are a community based health promotion organisation. In all that we do, we will seek to be active in:

Continued on page 9

Your questions

answered

Our strategic partners

Do you have a question relating to hepatitis C you would like a professional to answer in the Dear Doctor section? Email it to newsletter@hepccouncilsa.asn.au; post it to PO Box 782, Kent Town SA 5071; or drop in to the Hepatitis C Council at 3 Hackney Road, Hackney.

Our strategic partners include:

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Funding bodies

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Community networks, alliances and groups that influence programs and community attitudes

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Health professionals and service providers to our focus community

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Research, education and training organisations

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Professional, business and industry groups that influence policy and legislation.

Our strategic directions

Q.

My partner doesn’t understand the impact of living with hepatitis C, and thinks that I’m just being lazy and negative.

Sometimes the fatigue is so bad that I need to spend the day in bed, which means missing work. At times I feel like I’m going mad, and that I must be imagining things.

A.

Partners and family members often struggle to understand the full impact of living with hepatitis C, particularly if your appearance is not affected and you seem to be physically healthy. It might be useful to take your partner along to an appointment with your doctor or counsellor; this will give them an opportunity for a reality check from others who have a good understanding of the impact of hepatitis C both physically and emotionally.

If people close to you do not understand how unwell hep C can have you feeling it can lead to feelings of frustration and anger for everyone involved. You may feel that your partner doesn’t care about you or thinks you are lying or making it up, leading to resentment and having a negative impact on the relationship. This could be compounded by depression that some people living with HCV experience, and you may end up feeling very alone and isolated.

Are to:

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Contribute to hepatitis C prevention strategies

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Be accountable to, and form active partnerships with, our community, members, funding bodies and strategic partners

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Support people affected by hepatitis C achieve the highest quality of life, free from discrimination

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Ensure that our affected community receives highly practical assistance and support

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Advocate for easier access to a wide range of traditional and non-traditional treatments

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Maintain an organisationally robust, sustainable future for the Hepatitis C Council of SA.

Contact with the Hepatitis C Council would be a good idea, to get some initial support through the Hep C Info and Support Line (see service directory on page 15).

The Council will also be able to send out resources that provide helpful information about hepatitis C symptoms for both yourself and family members. The Council also has an excellent website that you can access for information, including dietary advice for helping to manage the symptoms of hep C. Relationships Australia (SA)’s MOSAIC program runs Living Well with Hep C groups regularly. They offer practical advice and techniques on how to live well with a chronic illness. It may be useful for you and your partner to talk with a counsellor from MOSAIC to discuss strategies for both of you to adjust to the reality of living with a chronic and sometimes debilitating illness.

The MOSAIC Team Relationships Australia (SA)

Winter 2005 • 9

Dear Doctor

Continued from page 8

Tune Into Your Health Feature article

CD launch The launch of the Tune Into Your Health CD was held at 2pm on Thursday April 14 at Nunkuwarrin Yunti.

The event was much more than just a CD launch. It was a celebration of indigenous culture and, as Steven Goldsmith from the Paitya Dance Group put it, it was all about ‘indigenuity’ and keeping the culture alive. There was a fantastic sense of togetherness and participation, and also a real sense of pride at achieving so much. Danny Gallant, manager of the Hepatitis C Council, described the event as, ‘A ground-breaking milestone for the HCCSA.’ Everyone was at the event to promote an important issue, but there was no shortage of fun and entertainment. The Paitya Dance Group performed traditional aboriginal dances including the Kangaroo and Emu dance, accompanied by the rhythmic sounds of the digeridoo and clapping sticks. Later, a musical

A slideshow featuring all the different regional groups and their songs was played to officially launch the CD. Everyone got a tiny taste of the music on the CD; an eclectic mixture of rap, r’n’b, and pop harmonies which come together to form a unique and informative tool for promoting awareness of hepatitis C. Afternoon tea was provided afterwards, giving everyone the

‘Stay healthy, stay deadly and stay strong!’ performance by Asta Wanganeen and Andrew Stennett provided a backdrop for afternoon tea.

A highlight of the event was the appearance by Kururru Indigenous Youth Performing Arts troupe. Kururru is a unique company made up of young indigenous performers from South Australia. They performed several modern dance pieces with movements inspired by traditional aboriginal dance. The audience was also treated to a live performance of their song from the Tune Into Your Health CD. Like all of the songs featured on the CD, the lyrics were meaningful and wonderfully uncensored.

10 • Hepatitis C Community News

opportunity to come together and discuss the success of the entire project. Everyone was thrilled by the enormity of what had been achieved; already so many young members of indigenous communities have been educated about the realities of hepatitis C, and the CD has the potential to reach hundreds more.

To use the parting words of Jan Fenley, from the Department of Health, which were taken from the Mount Gambier group’s song, ‘Stay healthy, stay deadly, and stay strong’.

Fleur Lewis

Top: A digeridoo player from the Paitya dance group.

Above: A rapper from Kurruru belts out his tune.

Facing page: Scott, Anson, Shannon and Lindsey at the Port Augusta launch.

Feature article

Port Augusta launch Following on from the successful launch of the Tune Into Your Health project in Adelaide, a regional launch was held at the Pika Wiya Health Service in Port Augusta. Approximately 25 project participants and regional health and community workers attended the launch.

Thanks to Warren Miller of Ceduna Koonibba Aboriginal Health Service for attending the launch to collect CDs and certificates on behalf of the Ceduna and Ernabella participants.The Tune Into Your Health project team was represented by Micah Wenitong (Nunkuwarrin Yunti), Leslie Wightman (Hepatitis C Council of SA), and Jimmy Perry and Paul Elliot (Aboriginal Drug and Alcohol Council). Thanks to Noelene ‘Noelsy’ Ryan-Lester of Umeewarra Aboriginal Media Association for providing media coverage of the launch and promoting the project via the National Indigenous Radio Network.

Point Pearce launch Bringing It Back to the Community was the name given to the Point Pearce launch of the CD. Point Pearce Youth Worker, Lynette Newchurch was enthusiastic about having a local launch to acknowledge and celebrate the fantastic work done by local youth on the CD project.

The Point Pearce launch was held on Wednesday May 25 during Hepatitis C Awareness Week.

The Tune Into Your Health project team was represented by Leslie Wightman with the event financially supported by the Hepatitis C Council. Thanks to Lynette for her local coordination.

CMAX requires volunteers with chronic hepatitis C to participate in clinical trials • You must be male or female and Aged 18–60 years • You must be a ‘non-responder’ or ‘relapser’ following interferon-based treatment • You must have had a liver biopsy within the last two years, or be prepared to have a liver biopsy as part of the screening procedures • You must not have cirrhosis on liver biopsy.

OR • You must be aged 18–60 years, male or female of non-childbearing potential (surgically sterile or postmenopausal) • You must not have received treatment for hepatitis C in the past • You must have had a liver biopsy within the last three years, or be prepared to have a liver biopsy as part of the screening procedures • You must not have cirrhosis on liver biopsy.

Financial reimbursement will be provided for volunteers.

The trial is approved by the Royal Adelaide Hospital Ethics Committee and will be held at CMAX, located at the Royal Adelaide Hospital.

For more information call 1800 150 433 Winter 2005 • 11

Zoe’s story My story

the holiday that changed my life Each edition we will be including a one-page story on a person’s experiences of hepatitis C. To submit your story, email it to newsletter@hepccouncilsa.asn. au; post it to PO Box 782, Kent Town SA 5071, or drop in to the Hepatitis C Council at 3 Hackney Road, Hackney.

When I was first diagnosed with hepatitis C, my world fell apart.

I thought it was just a matter of time before I died.

times during this period, visiting predominantly Asian countries, and it became all too clear to me that I had picked it up on a recent trip when I had gotten a tattoo in a makeshift tattoo parlour in Thailand. When I thought back to those few minutes that I had spent there, and the dinginess of the parlour, I cringed. I don’t believe that I would have gotten that tattoo had I not been under the influence of cheap beer and in a care-free holiday mode!

this disease!) to undergo a liver biopsy in the next few months.

That is a little scary in itself – but I am taking everything one day at a time. I have had to decrease the amount of alcohol that I drink, which in all honesty hasn’t been easy as I am a very social person and it just seems to be everywhere, but at the end of the day, it is just something that I have to do. My tiredness seems to have remained, and I am finding myself having nana naps at every given

I have now come to terms with the fact that I will more than likely have this disease for the rest of my life, and my initial fears of death seem a long way away.

Had I not made the effort to go

opportunity, but hey, I’m alive, and I have many more years to enjoy before I leave this earth.

I locked myself up in my house and cried and felt sorry for myself as I thought about never seeing my daughter grow up, and spending my last few years in and out of hospital wards. I was terrified; how could this be happening to me?

I had been feeling unwell for a number of months already. I had had abdominal pain, and had been unusually tired. I just knew there was something wrong.

Following a series of tests and a number of possible explanations as to the cause of my problems, the final test spelled it out clearly – I had hep C. The doctor, although trying to be helpful, was

Hep C doesn’t necessarily have to be a death sentence, but it does

‘Hep C doesn’t necessarily have to be a death sentence, but it does force you to re-evaluate what’s important to you...’ the first to admit that she knew very little about the disease. I think her ignorance, and inability to answer the bombardment of questions I fired at her did little to shed light on my situation; which only made me feel worse.

I racked my brain thinking about how I had gotten this disease. I had been very regular with STD check-ups, so I was able to isolate the time period between the last one, and my diagnosis. I had also been overseas a number of 12 • Hepatitis C Community News

into the Hepatitis C Council to find out more information, and talk with other people who have this disease, I don’t believe that I would be feeling as comfortable about my prospects as I am now.

I think that that was the single most important decision that I made in those early days, and I am extremely grateful for their assistance and honesty.

I am currently on a very long waiting list (I didn’t know that there were that many of us with

force you to re-evaluate what’s important to you, and how you can make the most of every day that you have with your friends and loved ones.

Please note that names have been changed to protect the identities of those involved.

The Clean Needle Program a question of accessibility

The program provides sterile injecting equipment, information about safer injecting and disposal practices, brief interventions and referral to injecting drug users via an extensive network of community-based CNP sites in community health centres, hospitals, pharmacies, nongovernment organisations and related agencies.

The Clean Needle Program was established in South Australia in 1989. The state now has 283 CNP sites operating in metropolitan and country areas, including pharmacy sites.

One of the most important aspects of the program is ensuring the service is accessible to those who need it most. ‘Injecting drug users from socially excluded groups tend not to access the Clean Needle Program’, said Stephen Lymb, Drug and Alcohol Services SA (DASSA) Manager.

‘There are poor rates of access to the CNP by injecting drug users who are indigenous or homeless,’ he said. ‘We want to improve those rates by making sure people can get access to services.’

DASSA is currently implementing a number of outreach activities to help make the state’s Clean Needle Program more accessible to young, homeless and Indigenous people. An additional outreach worker trained to work with injecting drug users has been

allocated to the CBD, through the city’s Indigenous clean needle program known as Nu-Hit, run by Nunkuwarrin Yunti Inc. Other activities being trialled include the introduction of a peer educator to the Second Story Youth Health Service in the city and an after-hours mobile service operating in the city on selected nights.

Feature article

South Australia’s Clean Needle Program (CNP) helps to reduce the spread of blood borne viruses, including hepatitis B, hepatitis C and HIV.

‘Outreach is really essential,’ Stephen said. ‘You want people to be able to access clean injecting equipment to reduce the spread of diseases such as hepatitis B, hepatitis C, and HIV.’ For further information on the Clean Needle Program or site locations phone the Alcohol and Drug Information Service on 1300 131 340.

CAM Therapies for Hepatitis C

This book was produced by the Hepatitis Resource Centre in Auckland, New Zealand. It covers a wide range of complementary and alternative medicines (known as CAM therapies) and is specifically targeted at people affected by hepatitis C; this includes people who have the virus, as well as agencies such as the Hepatitis C Council of South Australia, and professionals who treat hepatits C.

As the book points out, not everyone is suited to pharmaceutical treatment of hepatitis C, involving interferon and ribavirin combination therapy. Some people are not eligible for this treatment, and others opt to look for an alternative to avoid its often challenging side-effects.

The topics covered are many and diverse. A section on nutrition details a liver-friendly diet, listing foods to reduce and foods than can be beneficial; this section also looks at the advantages of dietary supplements. Also covered are western herbal medicine and ayurvedic medicine,

with specific examples of plants than can be helpful. The various elements of traditional Chinese medicine are detailed, from acupuncture to Qi Gong (‘energy work’).

CAM Therapies for Hepatitis C provides a broad and comprehensive overview of alternative and complementary medicines which can be used to treat hepatitis C, and should be used as a starting block for anyone interested in seeking out an alternative to conventional treatment of the virus.

Winter 2005 • 13

Read it now

CAM Therapies for Hepatitis C is available for loan and photocopying from the Hepatitis C Council.

by Robyn Brown

A day on the Feature article

golf course

On Friday May 6, a fierce competition was held to determine which of the Hepatitis C Council volunteers would take the crown of Golf Champion 2005. The volunteers had raised funds for this recreation day through an initiative selling drinks and collecting the deposit money from cans and bottles collected at the council.

Although rain had been forecast, when the big day finally arrived, there were clear blue skies and there was a sudden scramble for the sunscreen. Phil, Fred, Tim and John, all of who have been volunteering at the Council for at least a couple of years, set off with clubs in hand to see who would triumph and become Golf Champion 2005.

Geoff Heath Par 3 golf course at Campbelltown was the arena for this fiercest of showdowns. It was a good clean round of golf with all of the vollies displaying superb sportsmanship and encouragement to their fellow competitors. After the final ball was sunk, Fred, John, Tim and Phil realised that a countback was necessary to separate the top two players. Following a great deal of nail-biting and a long and anxious silence, Phil was pronounced the winner and received his crown with much pride, thanking his golfing partners for maintaining such a high standard of competition.

With the formalities taken care of, Phil found the time to sign a few autographs for his adoring fans and finalise his next sponsorship contract before heading back to the council where the four lads posed for a few publicity shots.

Then, it was off to the 19th hole for a thoroughly well-deserved lemon squash. The only thing left to do was to rest poor aching muscles and contemplate the next volunteer showdown.

14 • Hepatitis C Community News

Above: Phil, Tim, John and Fred at the Hepatitis C Council.

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artiic

Feeling

We want to see your stuff!

If you are a person whose life is affected by hepatitis C, drop in to the Hepatitis C Council at 3 Hackney Road, Hackney and show us your artwork.

We might just publish it in the next edition of the Hepatitis C Community News!

Mosaic Art Project Each group of young people had four health promotion sessions: hepatitis C, substance use, sexual health, and mental health.

The Mosaic Art Project was presented by HCCSA to five groups of young people in 2004 (this went all year). The participants in the Mosaic project came from Parafield Gardens Alternative High School, Marion Youth Service, Streetlink Youth Service, Services to Youth Council in Adelaide and Mission Australia’s Hindmarsh Centre.

At the end of each health promotion session the participants were encouraged to do some art about their thoughts and feelings on the particular subject. After this process had occurred all of the art work was put together and the groups of young people decided what they wanted to use to create one mosaic piece.

Each one of the mosaic pieces took approximately three months to complete. This allowed plenty of time for the young people to learn about the hepatitis C virus and in turn empowered them to talk to their peers about harm minimisation practices regarding each subject.

Cover story

The mosaic featured on the front cover this month was produced as part of the Hepatitis C Council’s Mosaic Art Project.

Sharon Drage, Metropolitan Educator/Community Programs at the HCCSA and Gina Allain, Art Therapist from Dreamcoats Paint Studio, worked collaboratively to present this exciting project to the young people involved.

Need help with hep C? Find it here...

SAVIVE

Relationships Australia (SA)

Provides information, education, support to the hepatitis C community and those at risk. The Council provides information and education sessions, as well as free written information.

Provides peer-based support, information and user education, and is a Clean Needle Program outlet.

Provides support, education, information and referral for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services.

The Calming the C Support Group is also run by the Council.

Hepatitis Helpline

Call the Council’s Hep C Info and Support Line for information.

(08) 8362 8443 or 1800 02 11 33 freecall number for rural callers

(08) 8334 1699

This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, counselling, referral and support.

Freecall: 1800 621 780

MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from culturally and linguistically diverse backgrounds.

(08) 8245 8100

The Adelaide Dental Hospital

Clean Needle Programs Nunkuwarrin Yunti To find out about programs operating in South Australia, contact the Alcohol and Drug Information Service.

A health service for Aboriginal and Torres Strait Islander people.

(08) 8223 5011

1300 131 340

Has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can recieve priority dental care.

Call the Hepatitis C Council for a referral on (08) 8362 8443.

Winter 2005 • 15

Service directory

The Hepatitis C Council

Become a member If you would like to become a member and recieve The Hepatitis C Community News on a regular basis, 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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