#28 Hep C Community News

Community News Autumn 2005

South Australia

Autumn 2005 • 1

Strategic Directions 2005-2008 The Hepatitis C Council provides information, education and support to the Hepatitis C community and those at risk.

Street: 3 Hackney Rd, Hackney Mail: PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 SA Regional Callers:1800 021 133 Web: www.hepccouncilsa.asn.au

Staff Members

Manager: Danny Gallant Metropolitan Educator/ Acting 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

Administration Officer: Megan Collier

Administration Officer: Lynn Newman

Librarian: Joy Sims

Board Members Chair Person: Leslie Dunbar Vice Chair: Peter Underwood Secretary: Fred Robertson Treasurer: Barbara Williams Manager: Danny Gallant Ordinary Members: Catherine Bunting Fiona Bellizzi Barry Horwood Helen Ingham Marian Rich Dean Wilkins

2 • Hepatitis C Council SA

A draft copy of the Strategic Plan for the Hepatitis C Council of SA is now available on our website.

The plan was developed through joint workshops of the Board and Staff in the latter part of 2004 and finalised by the Board in January 2005. Calls for feedback from our community and stakeholders was advertised through the Adelaide and rural press and through a mail out of our membership. A community consultation meeting was hosted by the Board on February 21st.

The feedback was presented at a Board meeting on March 1st and the overall consensus was that the draft plan was a sound mapping of where the Council wants to be in three years.

There was more than one member who requested that the Board be more clear about who are our target groups and stakeholders and this feedback will be addressed in the final copy.

A particular thank you goes out to those community members and staff who provided feedback on the plan and our stakeholders including the South Australian Voice for Intravenous Education (SAVIVE), Partners of Prisoners (POP), Equal Opportunity Commission (EOC), and Adelaide Diocesan AIDS Centre (ADAC) for their contributions.

We look forward to releasing the final Strategic Plan before June 2005.

Library opened The Hepatitis C Council’s library is now open for member’s use. It has a great range of resources very carefully selected by staff and volunteers who have ensured that resources chosen are relevant, reliable and come from trustworthy sources.

Some council members may remember its new librarian, Joy Sims, from her days as a final year student of Information Management. Almost four years ago Joy did a five-week placement with the council, an experience that helped shape her future path.

“I learnt a lot around that kitchen table at The Parade, and my time with the Council helped me to decide that I didn’t want to work in a traditional library setting,” she said.

Together with the support and advice of staff and volunteers, Joy has devised a cataloguing system unique to the Hep C Council of South Australia.

Designed to be a logical and simple approach to information about Hepatitis

C, the catalogue of resources follows a progression from general guides and handbooks and then moves through • Diagnosis and assessment • Transmission and aggravating factors • Treatment (medical and holistic) • Lifestyle • Education • Non medical issues (such as discrimination) • Special needs groups.

The library has also purchased a videoplayer and computer with CD drive to make use of its growing collection of videos, audiotapes and CD ROMs, and users are encouraged to use this equipment.

Another improvement brought to the library has been the introduction of a catologue of journal articles.

Major articles from newsletters and periodicals are listed in the ‘journal articles catalogue’, updated monthly, and located on the ‘new to the library’ display shelf.

“There are some brilliant articles in these newsletters, they’re highly relevant and of course right up-to-date,” said Joy. “The catalogue is organised using the same system as the main library so if you want to find the latest information on risk factors, medical research or alternative therapies: it’s all there and easy to find.”

Factsheets, articles and brochures are now easy to access in the comprehensive vertical file system (just inside the door on the right hand side).

This is a large collection of items found by staff, volunteers and visitors and library visitors are welcome to rummage to their hearts content and photocopies are available on request.

There are materials to suit a wide range of interests relating to Hepatitis C and related issues in the newly organised library. Come in and check it all out: just grab a coffee and browse.

Staff Movements By now many of you may have heard that Catherine Healey will be leaving the Hepatitis C Council to work at Relationships Australia as a counsellor for the MOSAIC Project and a new initiative in family support. Catherine has been involved with the Council for over 5 years in various capacities from volunteer to administration to Coordinator of the telephone line. The council wishes Catherine well in her new career path and thanks her for her

NEWS ongoing commitment to the care and support needs of people living with or affected by hepatitis C. A belated farewell to Sabine Whittlesea. Late in 2004, Sabine unfortunately had to resign to enable her to stay in Germany to assist with the support of her ailing father. Sabine started working at the Council as a volunteer in May, 1999 and in February 2000 commenced job sharing the role of Administration Officer. Sabine undertook her roles with commitment, creativity and energy. Over the years Sabine played an important role on the Telephone Information Line, in contributing to Council resource development and in maintaining currency of information on the Council website. All of us at the Council wish Sabine and her family best wishes.

Rural Network Connecting and Amplifying the Voice of Rural South Australians affected

by Hepatitis C is a new community development initiative to mobilise people throughout rural and regional South Australia who are directly affected by hepatitis C. To date over 12,000 South Australians have been diagnosed with hepatitis C and significant numbers of these are likely to live in rural areas. Using the prevalence estimates of 1%, there could be approximately 4,000 rural South Australians affected by hepatitis C. Anecdotal information from individuals living across rural South Australia suggests that there are many issues for people affected by hepatitis C, including fears of breaches of privacy, experiences of discrimination and limited access to a range of services and information.

This project will facilitate a network through which people with hepatitis C from rural communities can communicate with peers, articulate their experience and seek support.

Members will meet in Adelaide over a 15 month period commencing in May, 2005. The network will facilitate the sharing of information and personal stories and provide access to information and training that will encourage and enable participants to engage more confidently with relevant services.

The network will also serve as an advisory forum which will inform HCCSA rural policy and advocacy priorities.

From the editor...

In this edition...

Treatment is the big news in this edition.

On page 4, readers will find all they need to know about National Hepatitis C Awareness Week, the events planned for South Australia, and the Australiawide campaign to increase public awareness for treatment of the virus.

Tune into Your Health is a project to raise awareness of hepatitis C prevention among young indigenous people and you can get a taste of the fun the project’s participants had on page 6.

Don’t miss the cd launch on April 14 at Nunkuwarrin Yunti as part of the Youth Week Celebrations.

There are also a few personal touches in this edition - read Eve Doley’s account of establishing the “Calming the C” support group on page 8, and Steve Parker’s story of living with hepatitis C on page 13.

Hepatitis C Awareness Week

page 4

Tune into your health

page 6

For the latest research in simple-tounderstand language (no doctorspeak!) have a look at pages 10, 11 and 12.

In my brief time with the Hepatitis C Council I have found it to be a wonderful, welcoming place full of helpful staff and dedicated volunteers.

It is an organisation busily striving to serve the hepatitis C community and the broader public to the very best of its ability.

I hope this newsletter is a small part of that mission.

- Xanthe Kleinig

Calming the C

page 8 News New Research My Story Dear Dr Help Membership Form

2 10 13 14 15 16

The Hep C Community News Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of S.A. Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

We welcome contributions from Council members and the general public.

Hep C Community News PO Box 782, Kent Town, SA 5071 Ph: (08) 8362 8443 Fax: (08) 8362 8559 newsletter@hepccouncilsa.asn.au

Autumn 2005 • 3

National Hepatitis C

Awareness Week Hepatitis C is the most commonly notified viral infection in Australia with an estimated 225,000 people living with hepatitis C infection in this country (NCHECR, Annual surveillance report, 2002). Despite approximately 30,000 Australians with hepatitis C being eligible for government-funded treatment, only a small percentage access it. In fact, in 2003, “combination” therapy for hepatitis C was administered to fewer than 1,300 people in Australia.

So what are we going to do about it?

The Australian Hepatitis Council, with the state and territory Hepatitis Councils, is planning the first National Hepatitis C Awareness Week in May 2005, promoting hepatitis C treatment awareness amongst people with hepatitis C and general practitioners. Being the first nationally coordinated hepatitis C awareness week in Australia, this initiative was undertaken on the basis of recommendations made in various national reports such as the Australian Government Department of Health and Ageing’s 2003 report “Review of the National Hepatitis C Strategy 1999-2000 to 2003-2004” and the more recent Report of the Senate, Community Affairs References Committee “Hepatitis C and the bloody supply in Australia”, June 2004.

GPs are an important target of this campaign because they are usually the first point of contact for hepatitis C positive people 4 • Hepatitis C Council SA

to discuss treatment options.

Also, treatment has changed a lot over the last couple of years so it is important that GPs and other health workers are informed about these changes.

Here are some of the changes to hep C treatment you might not know about: •Hepatitis C positive people may be able to access government sponsored treatment even if they are currently injecting drugs and/ or on methadone.

•Management of side-effects (like depression) have improved a lot in the last few years.

•The newest treatment for hep C requires only one interferon injection a week, instead of 3 with the older type of interferon.

•Hepatitis C treatment has improved markedly in recent years, with 50% - 80% (depending on genotype) of people being treated with pegylated interferon and ribavirin clearing the virus •Even if treatment doesn’t work, it can have ongoing benefits for your liver.

Staff from the Hepatitis C Council of SA and other organisations working in this area have been busy planning for Awareness Week 2005.

An advertising campaign of posters and postcards will promote the campaign and

May 23rd- 27th in South Australia the week’s activities will be launched by Health Minister Lea Stevens.

A great event to get along to will be an ‘interactive case study’ forum where experts will discuss the issues to consider before starting treatment for hepatitis C .

A new website with information about both awareness week events and treatment options will soon be online and will remain a valuable research tool after the week is over.

We look forward to making 2005 Awareness Week a big success but we can only do it with your support.

Please contact the council and ask how you can get involved.

Alternatively, you could use Awareness Week as an opportunity to educate your family, friends and workmates about hep C and inform them that there is treatment available. Let’s make some noise about treatment awareness!

Contact the Coordinator of SA Awareness Week, Elissa Mortimer, on 8362 8443 for more information.

“Get hep C free” The theme of National Awareness Week 2005 is to promote awareness of hepatitis C treatment among people with chronic hepatitis C and general practitioners. Hence, the name of this year’s campaign is “Get hep C free.” The image on the front cover of this edition of the Hepatitis C Community News will be used in a poster and postcard campaign for awareness week. The AHC consulted an advertising company to design the image for awareness week. Their brief was to encourage hepatitis C positive people to talk to their general practitioners about treatment for the virus. These posters and postcards will be displayed and distributed in as many locations as possible and will form part of a resource kit which community health centres, GP practices and other organisations will receive.

How was the chain image chosen?

A selection of images were initially presented to the AHC by the advertising company and members of the National Awareness Week Coordinating Committee were consulted for feedback.

These state and territory representatives summarised the perspectives of members of the Local Organising Committees in their jurisdictions. Following this, focus testing was carried out with members of the hepatitis C positive community to discover which campaign they liked and responded to best.

If you would like to receive a resource pack including posters and postcards as well as booklets on treatment for hepatitis C, please contact Elissa Mortimer at the Council on 8362 8443.

What’s happening in South Australia?

•The State Health Minister, Hon. Lea Stevens (MP), will be launching the SA Awareness Week on Monday 23rd of May so mark it in your diaries now!

•An evening event is being planned during which community members and health workers will listen and ask questions to a panel of experts on the topic of treatment. This will be presented as a hypothetical case study and will be a fascinating look at the diversity of issues that need to be considered before someone starts treatment for hepatitis C. •Display stalls featuring “Get hep C free” posters and postcards.

This ad campaign was designed specifically for Awareness Week 2005 in consultation with sector workers and members of the hepatitis C positive population throughout Australia, including SA. •A website coming online soon with information about both awareness week events and treatment options for hepatitis C www.hepcawareness.net.au Autumn 2005 • 5

Tune into

your health Music is the universal language and a new cd to be launched in April will communicate vital health messages about hepatitis C in indigenous communities.

It is hoped that the ‘Tune Into Your Health’ CD, a compilation of songs written and recorded by indigenous youth will help to lower South Australia’s rates of hep c transmission amongst young people.

Key project workers Garry Goldsmith and Micah Wenitong from Nunkuwarrin Yunti and Sharon Drage and Leslie Wightman from the Hepatitis C Council worked with a range of agencies to educate young people about hepatitis C .

The initiative was designed to combat the over-representation of indigenous people in hepatitis C notifications. Indigenous people account for 6% of hepatitis C notifications despite representing less than 2% of the South Australian population.

“Singing and music is an excellent medium for learning and to broaden promotion of the hepatitis C message,” said Leslie Wightman, educator at the Hepatitis C council SA, “we found that young people were really keen to learn in the hands-on environment of music workshops.”

Rappers, singers and musicians took part in two-day workshops in Mt Gambier, metropolitan Adelaide, Noarlunga, Point Pearce, Port Augusta, Ceduna, Coober Pedy, Winkie and Murray Bridge. During the sessions they were taught music production and recording, as well as vital health messages.

Participants used the songwriting process to learn about hepatitis C and recorded their ideas about the disease on cds to be distributed back to indigenous communities.

1000 copies will be distributed after the project launch during Youth Week. The celebration will be held at Nunkuwarrin Yunti on April 14 at 2pm.

The project was the culmination of over a year of planning by Nunkuwarrin Yunti, the Hepatitis C Council of South Australia, the Aboriginal Drug and Alcohol Council, and supported by the Centre for Aboriginal Studies in Music (CASM). Local regional support was provided by a range of regional rural and remote Aboriginal Community Controlled Health services along with youth and education services and steering committee input was provided by Kumanka Aboriginal Youth Service and Kurruru Youth Theatre.

6 • Hepatitis C Council SA

Participants’ comments: “It was fun” “I thought it was deadly” “Easy to understand” “Proud to be part of the workshop” “Would like it to be over a week” “Loved learning about recording the beats of the song” “Writing and singing our own song is something I never thought I’d do” “That was very good, I liked the whole thing and I liked singing” “The input of the music onto the computer was hard work but great!”

Top: the group at Coober Pedy Above: Project workers: (left to right) Micah, Asta, Garry, Leslie and Sharon Left: Isaac and Susan at Ceduna Below: boys waiting to record at Nunkuwarrin Yunti

‘Spread the Word Positively’ Song sample Adelaide workshop - Nunkuwarrin Yunti

Hey broth, lend us your fit hey?

Nah broth, just used it You don’t want to catch hep C Same mother, same father, makes us brothers, doesn’t matter!

Yeah it does matter!…

Did you know that hep C is an infection That is carried through blood contact It’s a virus that can harm both you and me Hep C can lead to catastrophe (Chorus) Above: Mt Gambier girls, Kiah Dodd (left), Njirrah Rowe and Fabiola Goldsmith tune in Right: Anthony, one of the workshop participants at Point Pearce Below: the group at Point Pearce

Hep C isn’t safe for you and me Blood to blood to contact is easy to contract If you’re not aware of the impact Hep C can be dangerous No need to feel like it’s poisonous Responsibility as a community Spread the word positively We gotta tell the community about the fact Explaining hep C in this rap If you’re really tired and your feeling blue You have aches and pains and you don’t wanna move Go see your doctor ‘cause it might not be the flu Hep C is a virus and it can get you too!

Blood to blood contact is how it’s spread, sterilized equipment-get it in your head To stop it spreading be blood aware To beat it now we have to care You know that you’ve got to be more careful Hep C’s not a joke it’s for real (Chorus) You can get it from sharing needles & gear for a rush Watch out for tattooing, piercing, razors and the toothbrush There’s always a safe way but whacking up ain’t safe anyway Kissing hugging and sharing bongs, you won’t get hep C Listen to our messages and you can see how to protect yourself from hepatitis C

This project was a collaborative partnership between Nunkuwarrin Yunti, the Hepatitis C Council of South Australia and the Aboriginal Drug and Alcohol Council, funded through the Office of Aboriginal and Torres Strait Islander Health (OATSIH) with source funding from the National Indigenous Australian’s Sexual Health Strategy (NASHS).

(Chorus) Autumn 2005 • 7

Calming the C:

how it all began

By Eve Doley It was April 2004 and twelve of us were enrolled in a ‘Living Well with Hepatitis C’ course at Relationships Australia in Hindmarsh. We were a feisty lot as we were often bubbling over with conversation. We really needed to talk, especially to each other. Fred Robertson and Anne Bourne, our group facilitators really had a lively bunch to contend with.

Over the next few weeks a core group of us in the steering committee met at the Council and there we planned our support group.

We wrote up our simple mission statement:

It was great to meet others who were in the same boat. Being together we swapped stories and found ourselves so very enriched by the support and information that we shared.

We wrote our group norms in which we banned sexism and racism at our meetings. Our group norms are based on mutual respect and on sharing principles.

Our wonderfully apt name sprang magically to us in a moment of sheer creative serendipity. We are forever grateful to Mark for his brilliantly simple idea of the name, “Calming the Sea/C.”

We found ourselves helping, bonding and befriending each other. It was voiced in the group:

“something magic happens when we get together!”

The need for having our own support group was strongly expressed. We wanted to be able to continue on with the support that we felt we were giving each other. Previously many of us had felt isolated. It was a great relief to talk to others who understood our special problems of having to cope with fatigue, depression, isolation and discrimination.

Relationships Australia agreed to ‘tack on’ an extra session at the end of the Living Well course and at that meeting we formed our steering committee. The Hepatitis C Council of SA provided us with a wonderful facilitator in Deborah WarnekeArnold. The Council also offered us a venue and financial support for catering and for publicity. We were off and running!

8 • Hepatitis C Council SA

“Our aim is to initiate actions to improve the quality of life of people affected by hepatitis C.”

Some of the reasons expressed for wanting a support group were: -

•“As a single mum of teenagers I wanted to see if others had trouble maintaining a household and keeping up with all the demands of a family.”

•“For company as I felt so isolated.”

•“To see how others coped.”

•“To be at one with others with similar problems.”

•“To be able to talk to people who understand.”

•“To see how others cope and deal with the effects of treatment.”

•“I felt like Alice in Wonderland being told to take this or do that.

I needed to see for myself how others coped with managing their chronic illness.”

How things developed over time: Our group became very successful.

- Often fifteen or so people would turn up to the Tuesday meetings.

You never knew just who would come. It was great fun to see such a wide spectrum of people turn up.

We always share a healthy lunch of finger food and we have a roster for catering duties. There is something so pleasant about sharing food together as this action symbolises community.

One of the best aspects of the group is the two-way flow, the give and take of sharing support and conversation. For example, initially I got involved because I wanted to help my community but to my surprise I found myself being helped immensely. I’ve met some interesting people and have made some lasting friendships through my involvement with the support group.

As well as learning from my peers I found that I gained invaluable information from the professional people who came along to some of our sessions. The group was fascinated by the information session given by Alison, the dietitian who works from the O’Brien Street Clinic.

We recognised this information as being vitally important for the successful management of our disease. I found her information about the necessity of having high levels of protein in the diet to be personally very significant.

Similarly, a session with the naturopath Maureen went down a treat. She explained that supplementing our diets with protein powder mixed with soya milk can be highly beneficial for maintaining energy levels. She had some with her and John tried a glass and declared

LIBRARY PROFILE

A new addition to the Hep C Council’s library:

In the Eye of the Needle

by Dr Ingrid van Beek

Artwork by Eve Doley

it to be fine. Maureen also extolled the virtues of using vitamin B supplements as a way of combating depression and fatigue.

Health Service. Hopefully there will be many more such beneficial sessions coming up for us later this year.

Dr William Donahue gave us a talk on, ‘Pathways to Serotonin.’ It was a great talk as depression can be a major problem for us. We also recently had a wonderful relaxation and meditation session with Tina, from Adelaide Central Community

All in all, I think that we can be very proud of ourselves because we have done something very positive in taking the initiative and creating a support group for ourselves.

Well done “Calming the C!”

“It all began in a moment of great triumph and political courage.

Then there were complications: fierce opposition in the parliament including from the Australian prime minister John Howard, interference by the Vatican and the United Nations International Narcotics Control Board, heated community debate and a court action. Finally, in May 2001, Australia’s first legally sanctioned “A great read medically and hard to supervised get hold of in injecting centre opened with Adelaide” the challenge to – Danny Gallant save the lives of injecting drug users.

In the Eye of the Needle traces the story of the centre’s first 30 months and the battles to justify its existence. It introduces us to the harrowing world of injecting drug users, their tragedies and successes and the outstanding efforts of a group of health professionals dedicated to saving lives.

Despite its success, the injecting centre continues to provoke debate. This is a story that will not go away. In the Eye of the Needle provides a unique insiders account of what continues to be one of the most controversial public health approaches of today.”

Autumn 2005 • 9

NEW RESEARCH

Hepatitis C prevalence a nationwide serosurvey Most of us know that the number of people infected with the Hepatitis C virus in Australia is estimated at between 210 000 and 260 000. But, an interesting question is: where did this figure come from?

There is no way of testing every single Australian for the Hepatitis C antibody so in order to accurately estimate what the figure is, a Working Group was formed in 1998 called the Hepatitis C Virus Projections Working Group. The figure they came up with was calculated by estimating the number of Injecting Drug Users (IDUs) in Australia. Then, using figures which show the actual percentage of Hepatitis C in an IDU population, this percentage was applied to the rest of the estimated Australian IDU population. This is a simple explanation of the method used and other factors were also taken into account. Although these calculations provided an estimate, figures like this require a serosurvey in order to be validated.

This article summarises the method of conducting a serosurvey and the results from using this method, as described in a recent journal article. A serosurvey involves obtaining samples of serum (part of a blood sample) and analysing or “surveying” them for the Hepatitis C antibody.

This study was conducted by staff from 3 clinical research centres in Australia, including the National Centre in HIV Epidemiology and Clinical Research, National Centre for Immunisation Research and Surveillance of Vaccine Preventable Diseases and Centre for Infectious Diseases and Microbiology. The researchers included Greg Dore, a highly respected Australian Hepatologist.

Basically, the researchers requested laboratories throughout Australia to provide serum samples which were no longer being analysed and were soon to be discarded. Through this, they acquired 2800 samples. The researchers could not determine whether the samples they were testing were from IDUs or people with any other risk factors for Hepatitis C. The basis for using a serosurvey to estimate the incidence in the Australian population, is that the samples will represent a picture of the incidence of HCV infection in the population tested (in this case, 2800 samples.) The percentage of infection in this group is then extrapolated to the rest of the population. In order to lessen the bias in this survey, serum samples originally obtained from patients of sexual health clinics were excluded. In the past, testing of patients attending sexual health clinics has shown a higher level of Hepatitis C infection than in the general population. Consequently, these figures

To be held back to back with the

Australasian Sexual Health Conference Features Sessions on HIV and Hepatitis For further information:

visit: www.ashm.org.au/conference2005 or contact us on conferenceinfo@ashm.org.au or +61 2 9368 2718

10 • Hepatitis C Council SA

would have biased the sample and were therefore excluded.

So, what did the researchers find?

Well, out of the 2800 samples tested for Hepatitis C antibodies, 81 were antibody positive. As described earlier, these figures were then used to estimate the rate of HCV infection in the whole of Australia. If 81 out of 2800 samples were infected with the Hepatitis C virus, this represents 2.3% of the total samples tested. Consequently, using this serosurvey method, the number of people living in Australia who are infected with Hepatitis C is 433,000! (2.3% of the current population of Australia). As you can see, this is significantly more than the 210 000- 260 000 that we often hear!

How do we manage this discrepancy?

Well, firstly, we need to acknowledge that both methods for estimating infection have shortcomings and opportunities for errors. Both methods assume that the infection rate of a tested population can be generalised to the rest of the nation. This is how many statistics are calculated. Secondly, we need the scientists conducting such estimates to take these serosurvey findings into account and develop more accurate means of estimating the infection rate.

Thirdly, we need to consider that there may be a lot more people who are HCV antibody positive than we first thought.

Consequently, health services need to be adequately funded to provide services for those individuals who are PCR-positive (PCR tests for the Hepatitis C virus, not just the antibody). As Hepatitis C is a chronic illness, we may find that once the symptoms of Hepatitis C arise, often 15-25 years post-infection, the current health system is unable to cope with the increased demand on services. If we consider that the figure of infection may be much higher in Australia than we think, we all need to be aware of just how urgent this issue is likely to become.

Elissa Mortimer Summary of article: “Hepatitis C prevalencea nationwide serosurvey”, Communicable Diseases Intelligence, Quarterly Report, Volume 28, Issue no 4, 2004, Australian Government, Department of Health and Ageing

Mental

Changes

MENTAL HEALTH

associated with Hepatitis C and Interferon treatment This is an edited extract from research undertaken by Jo Mathers, an intern at the Hepatitis C Council of South Australia and in conjunction with the University of Adelaide, in late 2004.

Hepatitis C patients go through many physical and mental changes before and after diagnosis as well as when they undergo treatment. Interferon (IFN) treatment can potentially cause physical changes affecting skin, liver and eyesight.

Mental changes include memory loss, anxiety and depression. These mental health changes are of great importance as they influence quality of life as well as the outcome of treatment and may therefore have adverse effects on physical health.

Patients and health professionals need a greater understanding of why these mental health changes are occurring and at what stage, to enable patients to be supported and informed about their changing needs. An increase in knowledge and understanding of what causes these mental health changes will potentially make symptoms more manageable and increase quality of life for people living with Hepatitis C. Eight personal stories were gathered through in-depth discussions between the researcher and with individuals affected by Hepatitis C. All participants were recruited through the Hepatitis C Council and ages ranged from 41 to 57 years with a mean age of 50 years.

Discussions with participants explored their personal experiences including initial diagnosis, their associations to date and treatment.

Results - Initial Participants discussed the changes that occurred before and at the time of diagnosis. Symptoms prompting participants to be tested for Hepatitis C varied from asymptomatic to chronic symptoms for many years, as many as four years for one participant. These included unexplained symptoms such as fatigue and chronic nausea as well as brain fog (a state of confusion and haziness). One participant also noted that a hangover lasted for 4 days (a sign of liver damage) and liver pains were also common.

Reactions to the diagnosis varied throughout the participants, many were shocked but some were relieved as they now had a reason for these unexplained symptoms. Unfortunately many were left

wondering what that diagnosis meant due to the non-existent pre or post-test counselling at time of diagnosis. One participant was devastated and severely depressed, as they may be ineligible for treatment. There was also concern with the level of liver damage, as some participants had been drinking heavily prior to the diagnosis. For some it was seen as a death sentence.

All participants discussed the importance of having support from family and friends when they were diagnosed. At this time especially it was important not to feel ostracised. Most participants had the positive support they required, although one felt they couldn’t disclose this information to family for the fear of repercussions that might occur. Another participant found they were treated differently at family get togethers.

To Date Changes in mental health and quality of life since diagnosis varied among the participants. Many were able to continue lives as normal but the symptoms became worse with time. Problems with sleep and nausea were prominent. There were also relationship breakdowns with partners, family and friends, this lead to depression and anxiety. Isolation was very common, causing other changes such as not wanting to be involved with activities or unwillingness to leave the house. Lack of concentration was a problem as was mental tiredness and blank spots, which for many affected working and social situations. There was also a decrease in determination along with the difficulty of taking on something new. Confidence and a sense of fearlessness were no longer present. The combination of these factors especially depression, fatigue and nausea made the possibility of having a normal life seem very limited.

One physical progression associated with Hepatitis C is the change in liver function. These physiological changes can also have adverse affects on mental health. One participant developed cirrhosis within the last 5 years, this causes irreversible liver damage. While for another the results of a biopsy showed level 3 fibrosis, which is the stage before cirrhosis. There was a notable change in happiness and outlook before and after the liver function tests and biopsies.

In some cases diagnosis was interpreted as a positive experience. It made some more aware of their own health, more assertive and able to recognise physiological and psychological changes.

It was seen to change life for the better as it stopped destructive behaviour.

Treatment Seven of the participants underwent treatment with varying levels of success.

One participant was ineligible for treatment, due to level zero fibrosis of the liver (eligibility is level 2 fibrosis). The time difference between diagnosis and undergoing treatment varied from 2 to 13 years among the participants, with each participant having different reasons for timing of treatment, including eligibility (biopsy results) as well as being mentally and physically ready for the treatment.

Two participants underwent monotherapy (IFN treatment) and both were unsuccessful in clearing the virus. In 1996 mono-therapy was the only treatment available, which consisted of interferon injections three times a week for a period of six months. One of the participants, who was unsuccessful in clearing the virus in 1996, underwent combination therapy (interferon and ribavirin) and successfully cleared the virus in 2001. Combination therapy consists of injecting interferon three times a week as well as taking oral ribavirin tablets daily. A successful course of treatment takes 6 to 11 months depending on responsiveness to the therapy. Of the remaining five participants who underwent combination therapy, two were unsuccessful in clearing the virus, and they were removed from treatment due to lack of physical response and for psychological reasons.

One participant was initially cleared of the virus but remitted 6 months later.

Overall three participants out of the seven who underwent treatment successfully cleared the virus. The mental, physical and social changes that occurred throughout treatment varied considerably as well as the timing of onset changes from participant to participant.

Mental Health Throughout treatment mental health changes were prominent including several stages of depression, some resulting in hospitalisation. There were cognitive changes noticed by the participants including loss of short-term memory, brain fog as well as becoming Autumn 2005 • 11

confused. Emotional changes were present to varying levels including mood swings, emotional numbness, difficulty in feeling happy as well as agitation. One participant noted that activities that were once pleasurable were no longer pleasurable by the second month of treatment.

One participant found it hard to be subjective about their situation, thought they were doing fine, but others around them could see they were being severely affected by the treatment. While another participant found that treatment wasn’t that obstructive and they were able to continue to do the things they wanted to.

‘It was just a matter of living through the experience ‘.

Two of the participants were unable to complete treatment. One suffered severe depression, treatment ceased and they were placed on antidepressants. They spoke of having a total breakdown and hitting rock bottom.

Quality of Life The change in quality of life was quite severe for many participants when undergoing treatment. One experienced no quality of life at all as most time was spent in and out of hospital or in bed.

Isolation is a very common experience of participants going through treatment, which makes the time very lonely and drawn out. Especially when it is a time where the support of others is crucial.

Panic attacks were prominent, which made it difficult to function socially.

Anxiety in certain situations caused participants to rethink their day to day activities, they had to learn to take things easier. Some participants had prepared themselves for the worst and knew that their quality of life was going to be extremely poor. Although one participant noted that there were no changes in quality of life.

Physical Changes The extent of physical changes varied throughout treatment, many of which took a long time to dissipate and in some cases are still present many years after ceasing treatment. Weight loss was extremely common, not only due to lack of appetite but caused by changes of behavioural patterns such as sleep.

Fatigue and nausea are prominently associated with the virus but the severity of the effects was multiplied when undergoing treatment. Physical ailments included skin problems such as 12 • Hepatitis C Council SA

rashes, blisters, peeling and eczema. For some the sensation that ‘someone was scraping your bones with a wire’ was felt intermittently throughout treatment.

The aching pains like those when suffering from the flu is extremely common as well as night sweats, eyesight deterioration and loss of hair. One participant suffered from a thyroid problem, causing severe weight loss and resulting in the individual becoming very gaunt. The treatment also causes weakened immunity so participants were susceptible to conditions such as pneumonia.

After treatment Not all the mental, physical and social changes return to normal once completing treatment. Some participants had a roller-coaster experience once stopping interferon. They struggled to control moods and nausea. There was also the waiting to find out the results of the treatment. For one participant even once finding out they had cleared the virus it took a long time to be happy, they ‘just felt numb’. It took 3 or 4 months post treatment before moods started to lift. Another participant noted they didn’t completely get over symptoms till 2 years after ceasing treatment. After finishing treatment one participant ended up in hospital receiving palliative care caused by anaemia.

Overall 6 out of the 7 participants (who underwent treatment) said that going through treatment was worth it. The one participant who thought the overall experience was not worth it, still cleared the virus but thought that the mental and social changes that occurred throughout treatment did not outweigh the benefits.

The three participants who did not successfully clear the virus still thought treatment was beneficial because they tried and gave it a go. Liver function tests of these participants showed that interferon treatment diminished the level of fibrosis even if it didn’t clear the virus completely.

Discussion - Findings This research shows that the interpretation and perception of mental health varies greatly between individuals with Hepatitis C. It is important to understand that quality of life, physical changes, home life as well as social aspects all affect someone’s mental health at a specific time. According to the Department of Health and Ageing the health status of an individual or population’s overall health, takes account

of various aspects such as life expectancy, amount of disability, levels of disease risk factors and so forth. Mental disorders are described to include mood or thoughts that can affect behaviour and distress the person or those around them, so the person cannot function normally. The results of this research concludes that patients diagnosed with Hepatitis C as well as those who have undergone or undergoing treatment have low status of health (in all determinants) as well as varying mental health disorders.

Through in-depth discussions it was clear that the experiences of each participant were very different. The importance of having support throughout their experiences was shown. This involved family, friends and partners. Some were fortunate to have medical support, either an understanding specialist, general practitioner or psychologist. After initial diagnosis many were left feeling confused due to lack of information available and lack of understanding or support. For many study participants, with time, the Hepatitis C Council played an important role. It was seen as a safe place where the participants could be involved, while receiving understanding and support. It allowed many to become socially active again through volunteering, which was seen as extremely important. This was an expected outcome as participants were accessed through the Council’s networks, although it does not diminish the important role the Council plays.

The treatment experience varied throughout participants but despite the outcome most believed the experience was worth it. Participants were asked to discuss what they would tell other’s who were considering treatment.

They noted it was important to listen to questions, inform of personal experience, but understand that it is the individual’s decision. Everyone has a different physical and mental reaction to treatment. People need to understand the level of commitment that is required and, how long it will take to complete treatment. It is important to find out as much as possible about the side effects and the likelihood of clearing the virus.

The importance of a strong support network including family and friends was reiterated. A good general practitioner and specialist who understands the mental health consequences of treatment and the virus is also essential.

Jo Mathers

MY STORY

Every edition we feature someone’s story of coping with Hep C. If you would like to tell your story, please contact the council on 08 8362 8443 or email: newsletter@hepccouncil.asn.au

I

lay back on my pillow, cursed God and truly expected to die that night. The previous weeks had been a mixture of diarrhoea, vomiting, black urine and a weakness I’d never felt before. I could not hold food or fluids for more than a few moments and then I’d crawl back to a sweat soaked bed. I had been losing about three pounds in bodyweight each day and by then weighed in at 61 kg (about 20 kg lighter), and my skin was virtually orange.

The sickness started about 4 – 6 weeks after having been discharged from a hospital where I received blood products as part of my treatment. This was in the late seventies when blood could not be screened for the Hep.C virus.

Consequently the doctors I sought help from had no way of diagnosing whatever had made me so sick and this in turn left them with few options for treatment.

A couple of months later I was sent to prison for 14 months. Because I could not do the fairly easy task of gardening, I convinced the governor of that gaol to have further blood tests taken and the results of that was to have me handcuffed to a bed in Fairfield Infectious Diseases Hospital for the next two weeks.

They knew that I had something and they knew that they had no idea of what it was. It must have been too expensive to have two prison officers on duty 24/7 for just one person. So, in the end I got transferred to a small gaol where I suppose they thought they could contain whatever it was I had, should it turn out to be highly infectious.

Upon release, I did not feel much better, just weak, sick and distressed and very, very alone.

I married my best, and in truth, only friend and we had two sons.

These we brought up to the best of our ability considering our circumstances. She had to put up with me being an alcoholic and I had to put up with being alcoholic (a term most people have little or no concept of.) Regardless of my alcoholism the only thing which gave me any energy or relief from constant distress was to drink. And this of course made me sick anyway.

So naturally the doctors, teachers and anyone else put my problems and that of others down to me drinking. Thing is, when I would go to a rehabilitation centre I did not feel much better as time passed by.

Most others seemed to blossom, they found doors to pass through and many found new lives. Not me.

I only saw blank walls. Thinking was clouded, I rarely had any appetite so of course had little energy. If it was not for vitamin tablets I doubt I would still be standing.

I’d always been shy; having one untreated breakdown after another.

I became so scared of people that I could not even face a receptionist or make a simple thing like a phone call. Isolation, depression, distress and despair became my constant companions.

Eventually I had no choice about ceasing to drink alcohol. That was about three years after having been diagnosed Hep C positive. So I’d been very lucky to survive such chronic alcohol consumption for 19 years with this virus. I might point out that I did not use intravenously for 20 years after the hospitalisation, so it seems reasonable to presume that is where I picked this disease up.

to take me more effort than other people. Whenever I did find work it usually involved hanging off the side of a blast furnace or some other equally pleasant place. Rigging, scaffolding or building and repairing railway lines; real hard yakka which hurt and most of the time I felt weak and sick. Still what can you do when people think you are only making excuses? I even became a TaeKwondo instructor (which seems a bit out of place). It took me a year longer than most of the others.

Thing is only one in fifty healthy people achieve that and I simply refused to be beaten.

So now I am learning a bit about this disease, I can see that I am not the lazy, bludging, selfish failure that I had come to see myself as.

When I stopped drinking (6 years ago) my ALT was 1280, today it is 28. All other readings are within the normal range. It’s my hope that when I’m free of medications I may feel well within myself. In the meantime all I can do is to continue trying to improve my lifestyle. That and to be grateful for the blessings which I have received in my life.

I hope this writing makes someone feel a little less fearful or alone about his or her own lives.

So in the long run it’s just a matter of trying to do the best things for my body and hope that one day I’ll be medication free and know what it feels like to be well again.

Nearly everything I tried seemed

S. E. Parker Autumn 2005 • 13

Treatment trials The Viral Hepatitis Centre of the Royal Adelaide Hospital (RAH VHC) conducts national and inter-national clinical trials in the treatment of hepatitis C. Clinical trials in hepatitis C therapies have been conducted in Australia since the early 1990s - these studies are supported by the Australian Liver Association (ALA), and associated bodies, in the promotion of liver research, public awareness, professional education and standards of professional practice and treatment in hepatitis.

All trials conducted by the VHC are approved by the research ethics committee of the Royal Adelaide Hospital. All participants in trials are treated medically, with no placebo substitution for treatment of their hepatitis C virus.

Currently the standard of care for the majority of patients with chronic hepatitis C infection is combination therapy with ribavirin and pegylated interferon alpha, which replaced interferon-alpha monotherapy. The sustained virological response to treatment has greatly improved with the introduction of combination therapy, however, room for improvement remains, and therefore the need for research and development resulting in ongoing clinical trials continues.

Entry into clinical trials can be difficult, with the inclusion and exclusion criteria being very specific. However, some trials allow for the treatment of patients who do not necessarily meet the government S100 criteria for subsidised treatment. Each participant is fully evaluated, including liver biopsy, medical and psychological wellness and treatment status.

The Viral Hepatitis Centre of the Royal Adelaide Hospital is eager to provide optimal care to all hepatitis C patients on referral from your general practitioner.

The RAH VHC is involved in a number of studies. Two studies, actively recruiting, require the participants to meet the government S100 criteria - the benefit of participation in these two trials is that the waiting period for commencement of S100 treatment may be bypassed.

CHARIOT is a national study evaluating the effect of induction dosing with peginterferon and ribavirin (high dose peginterferon for the first 12 weeks of treatment) in patients with chronic hepatitis C genotype 1.

GET-C is a national study of tailored therapy with peginterferon and ribavirin for patients with genotype 3 and high viral load.

Other studies, now closed to recruitment, are: NV17317, an inter-national study evaluating the effectiveness of 16 wks V 24 wks of peginterferon and ribavirin in patients with HCV Genotype 2 and 3.

VISER 2, an inter-national study evaluating the safety and efficacy of a new drug, Viramidine, in conjunction with peginterferon in patients with HCV genotype 1.

Megan Phelps Clinical Trial Co-ordinator Viral Hepatitis Centre Royal Adelaide Hospital L7 OPD 14 • Hepatitis C Council SA

DEAR DR Got a question? Each edition we invite experts working with the hep C community to answer your queries.

Email: newsletter@hepccouncilsa.asn.au with “dear doctor” in the subject line. Names and adresses will be kept confidential and will not appear in print.

Q: I am thinking about starting treatment for Hepatitis C. I am worried about the impact this may have on my relationships with my partner and children?

A: It is important to be fully aware of how the treatment might affect you both physically and emotionally. This will help you make an informed decision and to know what to expect before you start.

Here are a few tips on how to prepare for and minimize its effect on your personal relationships: •People in your life may need information and support services during the course of your treatment (eg. access to carer benefits) so give them written information about treatment and side effect, as well as contact details for support services and groups.

•Side effects may mean that you are unable to carry out your routine domestic chores, so discuss rearranging this with your family. It may be a good opportunity for teenage children to take on more responsibility around the house. If needed, enquire about access to domestic support services.

•Mood swings, irritability, tiredness, aches and pains, foggy head and forgetfulness which can be caused by treatment may impact on your relationships. Talk about your needs and feelings with the people closest to you. Acknowledge the impact that your treatment may have on their lives and plan for how you will deal with the times when you feel the worst, and make the most of the times you are together when you’re feeling good.

•To prevent pregnancy, contraception is needed by both partners during and for six months after treatment (ribavirin can cause birth defects.) Discuss this with your sexual partner, specifically the use of contraceptives during and after treatment and how you will both remember to use them.

The HEP C Team

Q: I have just tested positive for hepatitis C and I am really worried about how to break this news to my family. I want to disclose but I am not sure how to go about it?

Service Directory

A: With disclosure, it’s very important to act thoughtfully and give yourself time. You may be strongly affected by the reactions of others. Do you know what they might say or do? Once you give out personal information you have no control over how others react to it or with whom they feel the need to share it. Some people find it hard to keep secrets: it can feel like a burden.

There are also particular issues to consider if you are thinking of telling children.

The Hep C Council provides Information, Education and Support to the Hepatitis C community and those at risk. The council provides information and education sessions.

Street Address: 3 Hackney Rd, Hackney.

Mail: PO Box 782, Kent Town SA 5071 Phone: 08 8362 8443

Why do you want to disclose? Is it a matter of household safety or are you still shocked and want to relieve your anxiety? Is this the right time to disclose? Are you coping well enough with the situation at the moment that you can talk about it calmly, answer questions with facts and minimise any fears others may have? Do you have enough information to do this?

At this time it can be really helpful to talk it over first with a counsellor or someone else you trust. The Hepatitis C Council has accurate information and resources available on a range of topics, including disclosure.

Counsellors with MOSAIC are also experienced in supporting people as they think through the many aspects of disclosure.

The MOSAIC Team MOSAIC Relationships Australia (SA)

Phone the Hep C Council for confidential information and support about hep C, as well as free written information.

Phone: 08 8362 8443 or 1800 02 11 33 (SA Regional Callers) Web: www.hepccouncilsa.asn.au Calming the C support group A group for people living with hepatitis C, initiated by community members, to provide support and opportunities for ongoing education and information sharing. Meets fortnightly on Tuesdays 12.30 - 2.30 pm at the Hepatitis C Council.

Phone: 08 8362 8443 Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander People.

Wakefield Street Clinic 182-190 Wakefield Street, Adelaide Phone: 08 8223 5011 Adelaide Dental Hospital The Adelaide Dental Hospital has a specially funded clinic for people with Hep C who also have a Health Care Card to receive priority dental care. Some research on dental health is carried out at the clinic.

Phone the Hep C Council for a referral on 08 8362 8443

HELP Hepatitis Helpline Operated by the Drug and Alcohol Services Council, Government of South Australia. Provides 24-hour information, counselling, referral and support.

Phone: 1800 621 780 (free call) PEACE (Personal Education and Community Empowerment) PEACE provides support, education, information and referral services for culturally and linguistically diverse communities affected, or at risk of infection of hepatitis C and/or HIV. Phone: 08 8245 8100 and ask for the PEACE project SAVIVE (SA Voice for IV Education) SAVIVE provides peer-based support, information and user education. SAVIVE is a Clean Needle Program outlet.

64 Fullarton Road, Norwood.

Phone: 08 8362 9299 Email: savive@camtech.net.au MOSAIC-HIV and Hepatitis C Counselling A free and confidential counselling service provided by Relationships Australia (SA) for anyone whose life is affected by HIV or hepatitis C. Free telephone counselling available for country residents.

Living Well with Hepatitis C courses are run periodically throughout the year.

49a Orsmond St, Hindmarsh.

Phone: 08 8245 8100 and ask for MOSAIC Clean Needle Programs Contact ADIS (Alcohol & Drug Information Service) for statewide locations of Clean Needle Programs.

Phone: 1300 131 340

Autumn 2005 • 15

Become a Member The Hepatitis C Council provides information, education and support to the Hepatitis C community and those at risk, and a strong membership of people affected by the virus is essential to our work.

Street: 3 Hackney Rd, Hackney Mail: PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 SA Regional Callers:1800 021 133 Email: admin@hepccouncilsa.asn.au www.hepccouncilsa.asn.au COMPLETE THE FORM BELOW AND MAIL TO THE COUNCIL The Hepatitis C Council of SA Inc. is aware of the need for privacy and endeavours to comply at all times with the Privacy Act 2001. As such, any information provided by you is accessed only by authorised personnel and will remain strictly confidential. To change or access any personal information we hold about you please write to the Coordinator at the above address.

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or renewing

member?

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Tick one membership box Non-waged membership Waged membership Organisational membership Application for zero cost membership (GST inclusive) Donations are gratefully received by the Council

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16 • Hepatitis C Council SA