#62 HepSA Community News

#62 • December 2013

Community News

LOU REED & HEP AWARENESS Art & Health • Reaching In at Glenside

FREE! Please take one

Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis.

Street: Mail: Phone:

Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepatitissa.asn.au

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Information and Support Coordinator: Deborah Warneke-Arnold Hepatitis SA Help Line Volunteers: Debra Karan Louise Michele Will Education Coordinator: Dr Tessa Opie

Useful Services & Contacts Hepatitis SA Free education sessions, printed information, telephone information and support’, referrals, clean needle program and library.

Cecilia Lim/Hepatitis SA

Hepatitis SA Community News offers hearty congratulations to the talented, dedicated and fundamentally amazing Fred Robertson, currently Peer Educator Mentor and a long-time Info & Support Line volunteer, for having given 15 years of service to the hepatitis community of SA. Fred is one of our most valuable assets, having been with the Hepatitis C Council and then Hepatitis SA from almost the beginning, and if he doesn’t stay with us for at least another 15 years, we’ll all be the poorer for it.

Front cover: Derived from an image by Vectorportal.com, used under a Creative Commons license Back cover: Photo by Nicole Taylor (see p14) Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au.

Educators: Claire Hose Elaine Lloyd Nicole Taylor Shannon Wright Hepatitis B Coordinator Jenny Grant

Editor: James Morrison Non-staff Contributor: Danella Smith

Information and Resources Coordinator: Cecilia Lim Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene

Contents

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline 1300 437 222 (cost of a local call)

Adelaide Dental Hospital A specially funded clinic provides priority dental care for people with hepatitis C with a Health Care Card.

Call Hepatitis SA on 1300 437 222 for a referral.

AIDS Council SA ACSA has closed down.

See p3 of last issue for details and replacement service contact details.

ICT Support Officer: Bryan Soh-Lim

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CNP in the South

beyondblue

Librarian: Joy Sims

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Success on a Shoestring

Mental health information line

Outreach Hepatitis C Peer Education & Support Project Coordinator: Lisa Carter

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Reaching In

1300 224 636 www.beyondlbue.org.au

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Nursing Webinars

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Carol’s Story

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Looking After Them? Study

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Lou Reed & Hep C Awareness

Peer Educator Mentor: Fred Robertson Peer Educators: Dean Karan Mark Penni Will CNP Peer Project Coordinator: Michelle Spudic CNP Peer Projects Officer: Carol Holly CNP Peer Educators: David Kylie Mark Nikkas Patrick Penni Sue BOARD Chairperson: Arieta Papadelos

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What’s On

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Art, Education & Health

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In Our Library

Secretary: Lindsay Krassnitzer

1300 131 340 Community Access & Services SA (a service of the Vietnamese Community in Australia, SA Chapter) Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8447 8821

Treasurer: Howard Jillings Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Carol Holly

Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service.

Catherine Ferguson Jeff Stewart

Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. 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 Hepatitis SA members and the general public.

Department for Health and Ageing, SA Health has contributed funds towards this program.

Bring back life form. Priority One. All other priorities rescinded.

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

P.E.A.C.E. HIV and hepatitis education and support for people from non-English speaking backgrounds.

1800 650 890 www.headspace.org.au

(08) 8245 8100

Lifeline National, 24-hour telephone counselling service.

Positive Life Services and support for HIV positive people – including treatments information and peer activities.

13 11 14 (cost of a local call) www.lifeline.org.au

(08) 8293 3700 www.hivsa.org.au

Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers.

SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

13 14 65 MOSAIC Counselling service For anyone whose life is affected by hepatitis.

(08) 8223 4566 Nunkuwarrin Yunti A city-based Aboriginal-controlled health service with clean needle program and liver clinic.

(08) 8406 1600

(08) 8351 7626 SAVIVE SAVIVE has closed down. Its role has been taken on by Hepatitis SA: please contact us for more information on 8362 8443.

The Second Story Free, confidential health service for youth aged 12 to 25.

Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100

Hepatitis C Community nurses Care and assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for appointment.

Central & North:

Margery - 0423 782 415 margery.milner@health.sa.gov.au Debbie - 0401 717 971 deborah.perks@health.sa.gov.au Jeff - 0401 717 953 jeffrey.stewart@health.sa. gov.au Trish - 0413 285 476 South:

Rosalie - 0466 777 876 rosalie.altus@fmc.sa.gov.au Emma - 0466 777 873

Are you interested in volunteering with Hepatitis SA? Give us a call on 08 8362 8443 or drop us a line at admin@hepatitissa.asn.au. We rely on volunteers for many of our vital services.

News

CNP in the South

A CNP offers IV drug users a safe environment, with sterile needles and syringes, sharps disposal containers, disposal facilities, and education about drug use.

Drug and Alcohol Services SA (DASSA) approached DRUG-ARM to open a CNP at their Warradale location after identifying a gap in the local services. Although CNPs are sometimes a controversial topic, the CNP coordinator at DRUG-ARM SA, Rhona Wood, says, “The benefits of CNPs are hard to argue with.”

“They have reduced the transmission of hepatitis C and other blood-borne viruses (BBVs) significantly since their introduction. This equates to a large saving of money to the health budget, as well as reducing suffering to those who may have otherwise contracted a BBV.” Rhona explains the benefits of CNPs are vast and contribute to the wider community.

She says, “CNP workers are great advocates for the benefits of CNPs and can help

to break down the myths, taboos and stigma that often surrounds the topic of IV drug use in the general community.

“CNPs are also in a unique position to be able to provide education, brief intervention, and referrals to clients that may not be linked in with any other services.”

The DRUG-ARM SA state office relocated to its Warradale location in 2011 and has since provided services to those living in the southern suburbs.

Other programs offered include the Community and Family Support Services 12-week brief intervention for individuals seeking assistance with their use of drug and alcohol (offered in the southern and northern suburbs) and the Street Outreach Program (SOS) which is a mobile service offering referrals in the southern suburbs on Friday and Saturday nights.

The DRUG-ARM program runs Tuesday to Friday, 9am to 5pm. For more information on the CNP or DRUG-ARM services, please contact the state office on (08) 8296 4777 or sa@drugarm.com.au.

Danella Smith

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

Rhona Wood/DRUG-ARM

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RUG-ARM Australasia recently opened their first Clean Needle Program (CNP) in Australia, at their SA headquarters in Warradale.

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News Working with Communities

Success on a Sh Shoestring es r ng Highlights from the National Hepatitis Health Promotion Conference

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he right staff, the ability to tap into existing networks and resources, and an understanding of community needs—these were common features of the Successful Projects on a Shoestring presented at the National Hepatitis Health Promotion Conference recently.

About 200 health packs are distributed at each event, providing opportunities for engagement and brief interventions with homeless people who may have, or are at risk of, hepatitis C.

“Nikki puts regular posts on the site requesting various items, and amazingly, people come in and drop off donations that go into our health packs.

How do they do it without a budget? According to Jodie, with a dedicated, engaging worker named Nikki and a website called givit.org.au.

donations and discounts. She makes friends, follows up and gives feedback on the impact of donations through Facebook and other social media.

“She is not afraid to ask for

The three projects presented were all under $12,000 and all worked with hard-to-reach communities.

Outreach Without A Budget The first project, Hepatitis Queensland’s (HQ) homeless outreach project, has no allocated budget yet amazingly reaches at least 1,000 homeless people each year at regular Homeless Connect events in the parks.

“We work first with what clients need,” said HQ health promotion officer Jodie Walton.

HQ outreach workers hand out health packs that include much-needed basic items like toothpaste, tooth brushes, razors, shampoo, condoms, tampons, deodorants, band aids and soap.

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This national website, which appears to be especially active in Queensland, matches those who need with those who give. “We tap into people’s need to give and share,” said Jodie.

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

“And she always remembers to say thank you.”

For tips on using givit.org.au, email Nikki at info@hepqld. asn.au.

Working with Communities News Deadly Liver Mob Like the HQ outreach project, Deadly Liver Mob hinges on having just the right people working on it. This project was born out of the need to raise hepatitis C awareness among the Aboriginal community in Western Sydney.

Adopting an approach of expanding networks, the service’s busy Aboriginal Sexual Health Centre encouraged clients to attend short viral hepatitis education sessions. As incentive, those who did were given a $20 shopping voucher.

The education sessions were simple and visual, employing models to explain how blood vessels work and the location of body organs.

My Precious Liver

basic questions about viral hepatitis.

People who had the viral hepatitis education were given further incentives to go for hepatitis screening and hepatitis B vaccination, to return for results and followup, and to attend their last hepatitis B injection.

After 26 weeks, operating twice a week, the project had recruited 248 people, 77% of whom also underwent hepatitis screening. Not all participants were injecting drug users, and some came from as far away as Armidale (more than five hours by road).

“One of the reasons the project was successful was because David Webb, our Aboriginal Sexual Health worker, was from the local Aboriginal community,” said Aboriginal project worker Kerri-Anne Smith.

“The fact that I am Aboriginal, and had successfully undergone treatment for hepatitis C, also got people listening.”

The third project presented was Hepatitis SA’s hepatitis B awareness promotion through local Chinese ethnic schools.

Funded by a small grant from Hepatitis Australia, the success of My Precious Liver was driven largely by an experienced bilingual worker who was flexible and able to build rapport with the different school organisers.

It made use of an existing network to reach the wider community and also understood what was important to the school organizers by providing them opportunities to showcase their students’ skills, with materials useful for lessons, and most importantly giving them the flexibility to decide how they wanted to use the materials.

For more information about My Precious Liver, see page 11, issue 56 Hepatitis SA Community News (www. issuu.com/hepccsa/docs/ hcn_56).

Cecilia Lim

Clients who had done the education were given incentives to recruit friends and family to attend. They were also encouraged to educate their mates about hepatitis. The recruiter gets another $10 shopping voucher for each recruit, plus another $10 voucher for each who could correctly answer

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

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Working with Communities

Reaching In Peer Educators and Support Workers ‘reach in’ to DASSA Withdrawal Management Services’ new site at Glenside

Peer Educator Fred Robertson at Glenside

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ur Peer Education and Support Team provide health promotion and harm reduction information about hepatitis C transmission, prevention, symptoms, testing, health maintenance and treatment during weekly group sessions with the Drug and Alcohol Services of South Australia (DASSA) in-patients.

The Peer Educators, Fred and Karan, speak openly and candidly, dispelling myths about living with hepatitis C. They also explore experiences of having accessed treatment and of navigating treatment services.

Lisa Carter / Hepatitis SA

At a recent session, there was a patient who felt the group was not relevant to him, and was reluctant to join in. This is understandable, given that in-patients are withdrawing from alcohol or other drugs, 4

and while as an in-patient their symptoms are medically managed to ensure that they are as comfortable as possible, talking about hep C may not be high on their list of priorities.

This person said to Fred that he “didn’t need to talk about hepatitis, I don’t do that shit”.

However, he was encouraged to attend the group by the DASSA nurse. The person joined in and at first was disruptive and interrupted with incorrect information.

Near the end of the session, when Fred was explaining the difference between anti-body testing and PCR testing, this person disclosed that he was once told that he had hep C antibodies and that they had never, until now, made the connection that he may be hep C-positive.

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

Fred was able to explain things more and refer him for further testing. By the end of this session, the client said, “Thank you for the insight you gave me during the talk. More people should have the right to information sessions like this— it may reduce the percentage of these viruses in Australia”.

DASSA Withdrawal Management Services provides assessment and inpatient medical detoxification for people withdrawing from alcohol and a range of other drugs. The service is free and confidential. No referral is necessary. To arrange an assessment, call 1300 13 13 40 (for a local call fee). Services are now located at Glenside Health Services: 226 Fullarton Road, Eastwood, SA 5063.

Lisa Carter

Advancing Healthcare

Nursing Webinars Advancing primary health care through online measures

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he Australasian Society for HIV Medicine (ASHM) have begun publishing free nursing webinars to help increase knowledge within primary health care about topics such as viral hepatitis, HIV and STIS. The webinars are hour-long educational sessions presented live by experienced nurses and educators. They are recorded and then uploaded onto the ASHM Vimeo website, where anyone with an internet connection is able to view them.

Participants have the opportunity to submit questions to the presenter who can answer them directly during the live webinar.

The nursing program manager at ASHM, Emily Wheeler, says the webinars are “primarily designed for primary health care nurses around Australia, especially those outside metropolitan areas or those who work in busy practices, which can result in a limited capacity to attend faceto-face training.”

She says the webinars “allow for quick, regular updates without the need for nurses to travel,

which is efficient and effective use of the workforce development funding as it reaches many more people without compromising on the quality of education.”

Available now on the Vimeo page is a webinar presented by the University of NSW Deputy Director of the Centre for Social Research in Health, Professor Carla Treloar, concerning knowledge in hepatitis C prevention, transmission, self-care and treatment.

Other available webinars are on topics such as hepatitis C triple therapy, sexual health diagnosis and testing, chlamydia and hepatitis B nursing.

Ms Wheeler addresses the need for nurses and health care workers to stay updated with education particularly on topics which are relevant to practice nurses.

“The National Strategies for HIV, hepatitis B, hepatitis C and STIs all indicate a need for primary care to take on a greater role in the testing and management of these conditions,” Ms Wheeler says.

“The epidemiology shows rising numbers of BBVs and STIs and the need for prevention, testing, care and management is always growing. Nurses can play an important role in expanding access to testing and management and should be supported to do so.

“Expanding the scope of nursing practice is possible through education and support from organisations such as ASHM and the Australasian Hepatology Association (AHA).”

Adelaide University health science student Jade Spurgin hopes to be an intensive care nurse one day, and agrees advances such as the webinars are a great way to continue increasing knowledge and staying updated.

“I can understand nursing is a very busy job where

a lot of the time you are working shift work and the last thing you would want to think about is organising to get back into study or attend a session on your day off,” Miss Spurgin says.

“The hour-long webinars seem great for a quick update from people who are very experienced in the field.”

ASHM plan to run a new nursing webinar every month throughout 2014.

Nurses and other health care professionals are encouraged to register for the webinars to continue to build their skills.

The recorded webinars can be found at http:// vimeopro.com/ashm/ live.

For more information, contact Emily Wheeler on (03) 9341 5244.

Danella Smith

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

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Personal Story

Breaking Out of a Dead End Carol’s story

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he daunting emotions after being diagnosed with hepatitis C are all too familiar for 50-year-old Carol Bose.

Approximately eight years ago, a routine blood test led to doctors discovering Carol had hepatitis C. “I was not in a good place with my life,” Carol says. “I had lost my career path a few years earlier and landed myself in a dead-end relationship.

“Looking back now, I realise I was depressed and doing all the wrong things. It’s hard to believe, but I actually continued drinking alcohol.”

Specialists recommended

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interferon and ribavirin combination therapy in the hopes of clearing the hepatitis virus from Carol’s blood.

Being told there was a 50% chance of the medication working, Carol knew she had to give it a shot.

“A main concern for the specialist at that time was that for some people treatment can cause suicidal thoughts, and it was highly recommended that there was support from a partner or family for the duration of the treatment,” she says.

Carol quickly learnt that, as with most medication, there were some other serious sideeffects.

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

She says, “The main ones I remember were being drained all the time, as though I had just run a marathon—body aches and pains, headaches, some nausea, dry skin, dry mouth and hair loss. My hair started to thin so I got extensions, but it didn’t take long before they began to pull my hair out from the roots.”

While on the medication, Carol’s days turned into a big blur as she struggled to find energy.

“I would spend most of my days lying on the sofa watching TV,” she says.

“I remember leaning against the sink at night while brushing my teeth because

“My house wasn’t very big but I would have to sit down and take a break when walking from one side to the other.

“Every morning when I made my first move, my biggest dilemma was deciding whether I felt like I had been hit by a truck or fallen out of a high-storey building.”

Despite Carol’s struggles with hepatitis C, she was lucky enough to meet Alex—the man of her dreams.

She says, “We lived together after two weeks and brought a home together shortly thereafter.

“It’s somewhere I have always wanted to live—a cottage in the country with open fireplaces and beautiful leadlight.

“We married on our front porch in 2009.”

Carol says meeting her wonderful and supportive partner allowed her to finally become serious about facing her virus.

After 11 months of being on the medication, Carol completely gave up alcohol, cigarettes and a negative outlook on life.

“It’s a whole new life and every day I feel very lucky and appreciative,” she says.

“For about a year afterwards I still felt most of the effects of the medication as my body started to recover.

“My hair is now the longest it has ever been. Even as a child I don’t remember it being this long.”

The combination therapy was a success for Carol, despite all the horrible side-effects, as she is now hepatitis C-free.

Confetti Photo CC smcgee [flickr.com/photos/smcgee/219449343]

it was too tiring to stand for long.

“I was so lucky it worked,” she says.

“Like many things in life, we are all so unique from one another and are lucky in some areas but not so lucky in others.”

Danella Smith

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

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• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

Advancing Healthcare

Looking After Them?

New study aims to improve hep C care

J

ane Scarborough is a PhD candidate at the University of Adelaide.

She also works at Drug and Alcohol Services South Australia (DASSA) working with community general practitioners (GPs) on prescribing methadone and buprenorphine for heroin and other opioid dependence.

She offers ongoing support to prescribers, including organising education about issues such as hepatitis C. Her PhD project, Looking after them? Factors affecting provision of care for hepatitis C in Australian private general practice, aims to look at what affects the care provided for people with hepatitis C in private general practice and to make recommendations as to how this care can be improved. Her supervisors are Dr Jaklin Eliott (PhD), Dr Emma Miller (PhD) and Dr Paul Aylward (PhD).

The basis for the project is that GPs are well placed to be involved in the management of hepatitis C playing a key role in diagnosis, initial assessment, referral to specialists and ongoing monitoring of people with chronic infection.

Jane Scarborough Most people diagnosed with hepatitis C are diagnosed

by GPs but not everyone with hepatitis C has been diagnosed. Studies have found that people have a mix of good and bad experiences with GPs. Hepatitis C and injecting drug use are stigmatised and this can affect care provided and care sought. There are reports of people feeling that some GPs don’t understand what it is like to live with hepatitis C. The first stage of the study will examine the experiences and perceptions of people affected by hepatitis C. Jane hopes to interview people with, or at risk of, hepatitis C and key workers who provide hepatitis C related services. To be involved people must be over 18 and able to be interviewed in English. The

interviews will take about an hour, with Jane asking some questions and having a chat about what is said.

Topics to be explored include: • People’s knowledge of hepatitis C. • The perceived effect on people’s lives of hepatitis C. • Care sought by people for hepatitis C and other medical care.

• Experiences and perceptions of interactions with private GPs and their practices.

As a research project; participation is voluntary, participants can decide which information they wish to share and are free to withdrawal from interviews at any (continued on p12)

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

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Cover Story

We Need to Talk about Hepatitis C The death of musician Lou Reed from liver cancer may raise awareness of the challenges of living with hepatitis C, but more work needs to be done to make sure treatments are widely available.

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n a moving, intimate tribute to Lou Reed in the current issue of Rolling Stone, his partner Laurie Anderson writes with gratitude and love of their shared joys of artistic endeavour, their embrace of life and learning and of Reed’s power and grace, even in the face of death.

C and comes with lots of nasty side effects.

She also writes, in an awareness-raising matter-offact manner, of the challenges of living with hepatitis C, the chronic liver disease that led to his liver cancer, a liver transplant, and ultimately his death from complications.

One of the greatest challenges faced by people living with hepatitis C, their partners and families, is discussing the illness openly.

Anderson wrote: “He was sick for the last couple of years, first from treatments of interferon, a vile but sometimes effective series of injections that treats hepatitis

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“Last spring, at the last minute, he received a liver transplant, which seemed to work perfectly, and he almost instantly regained his health and energy. Then that, too, began to fail, and there was no way out.”

Although Reed, a founding member of The Velvet Underground, did not shy away from his own personal history, the stigma associated with the alignment of hepatitis C infection and injecting drug use is so profound that people often hide their status, even

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

from their family and friends.

For most people with hepatitis C there is no fame or fortune to dilute fears of being harshly judged.

Consequently, even in consultations with health care professionals many people with hepatitis C are reluctant to acknowledge past injecting drug use, often due to their previous experiences of discrimination.

Such stigma and discrimination are major barriers to advancing the public health response to hepatitis C at both the individual and population levels.

Furthermore, although injecting drug use accounts for the majority (70-

There is a huge diversity of people with hep C. Irrespective as to whether someone acquired hep C through a single episode of injecting drug use many years

ago, or uses regularly, or acquired infection through another means, they all deserve access to quality, nonjudgemental health care.

The mobilisation of advocacy to address the rising burden of infection and deaths from HIV in the 1980s was supported by the effective community-based endeavours of the gay rights movement of the 1970s.

In contrast, former or current injecting drug users are generally reluctant to identify with this part of their lives, despite often having strong social networks related to such shared experiences.

The illicit nature of injecting drug use has also clearly influenced community attitudes and impeded the overall public health response to hepatitis C, despite a well-developed strategic governmental response, particularly in New South Wales.

Change, however, is imminent. Within the next few years, the treatment of hepatitis C should be transformed from the relatively prolonged (6 to 12 months), arduous, and often ineffective interferon-based injectable therapy that Reed endured, to an oral once-daily “directacting antiviral” therapy with limited side effects.

Even more remarkably, based on preliminary clinical trials, the cure rate with these new

hepatitis C regimens should be greater than 90%, with treatment only required for three months.

But, to enable people living with hepatitis C to benefit from what could be one of the great clinical advances in recent decades, treatment programs must be within reach.

This means challenging stigma and discrimination now and raising community awareness to support people with hepatitis C to seek treatment, as well as making sure that treatment is widely available.

I have had the opportunity to care for people with hepatitis C in hospitals, methadone clinics and community-based clinics; such diverse care environments reflect the great diversity of those living with the illness.

The Perfect Day that we are striving for in hepatitis C would be one in which the 230,000 people living with chronic hepatitis C in Australia have the opportunity to fully benefit from approaching advances in treatment and care.

Professor Gregory Dore Professor Gregory Dore is head of the Viral Hepatitis Clinical Research program at the University of New South Wales’s Kirby Institute.

Read Laurie Anderson’s piece at www.rollingstone.com/ music/news/laurie-andersonsfarewell-to-lou-reed-a-rollingstone-exclusive-2013110

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

Lou Reed photo CC Phil King [flickr.com/photos/24365773@N03]; background photos CC Doctor Popular [flickr.com/photos/docpopular]

80%) of cases in Australia, there are other means of infection. People have become infected through contaminated blood transfusions they received before screening of blood donors was introduced in 1990 (hep C was discovered in 1989), and through injections or other health care procedures in developing countries (rarely in developed countries) prior to migration to Australia. Being infected with hep C through sexual contact is rare, apart from among gay men with HIV.

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Walking on the wild side: not so easy for some As Greg Dore explained (see p10), renowned rock artist Lou Reed passed away in October from liver cancer after living with cirrhosis and hepatitis C. Despite his health difficulties, Reed lived a fulfilling life and was not ashamed of being hepatitis C-positive—in fact he was happy to let the world know.

Taking a walk on the wild side was not always as easy for Naomi Kempm, who was once hepatitis C positive but is now fortunate enough to have cleared the virus. Naomi says she struggled to be open about living with hepatitis C to her family and closest friends.

“One of the reasons I didn’t make my condition known was because I felt people would make assumptions, and I’ve had

(continued from p9) stage. The interviews will be recorded with only Jane having access to the recordings. The interviews will then be typed up. Jane and her supervisors value highly the confidentiality of participants and of the information provided. Details which identify the person interviewed will be changed so that it would not be easy to tell who they are. They will not publish any information which they believe will identify the participant, people talked about or particular organisations discussed.

To get involved in the study please ring Jane on 0404 676 304. If you wish to talk to Jane 12

enough of people assuming the worst of me,” she says.

“Secrets are kept for a reason, whether you’re famous or otherwise, and most of the time it’s not to be looked down on or shamed, ostracised, avoided, neglected and so on—it’s the reason I’ve not shared more about my experience with hep C or many things I’ve been through in my life.”

Naomi says the social stigma surrounding hepatitis C is often the reason people are afraid to talk. “There are so many people with hep C but the social stigma surrounding it keeps them quiet,” she says. “No disease, illness or accident discriminates—only people do.”

Naomi was not a huge fan of Reed, but she enjoyed listening

and she does not answer the phone, please ring back later or leave a message with your number, the best time to call back and first name (optional) or text this information. Jane will call you back and will: • check whether you are over 18 and can speak English; • answer any questions you have about the study; • arrange a time and place for your interview; and • ask you whether you want an information pack sent to you.

Jane and her supervisors will analyse what people have said, then sum up what they have found from speaking

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

to his music and can appreciate his dedication to shining a light on people living with hepatitis.

“I admire those who are and have been open about their diagnosis, treatment and battle with hepatitis C and any other medical, mental, physical, sexual, emotional or other battles they have triumphed over or are still fighting.

“I believe the more people share their experiences with each other and the world, the more awareness, knowledge, understanding and prevention results. I admire their bravery and courage to stand in the line of fire of those who don’t know, because not all will admire or respect how incredibly hard it is for them to do so.”

Danella Smith

to everyone. They hope to publish what they find to help people understand more about getting care for hepatitis C from private GPs. Your name or any other information that could identify you will never be published.

Once the first stage is complete, Jane plans to do research in private general practices to gain an understanding of the provision of care within these settings. The findings from the two stages of the project will be used to inform implementation strategies of best practice care for people with hepatitis C in private general practice.

What’s On Hepatitis C peer educators available to provide information and support to clients at the following services:

Affected by hepatitis C?

• Information and support in a conidential, friendly environment • Speak to others who have had treatment • Partners, family and friends welcome

Now meeting at HACKNEY and ELIZABETH Meet us fortnightly on Tuesdays, 12.30pm-2.30pm at Hepatitis SA, 3 Hackney Rd, Hackney Live in the Northern Suburbs? Can’t make it to Hackney? Come to

CALMING the C in the NORTH Every fourth Friday of the month 1–3 PM Room C20, GP Plus Elizabeth 16 Playford Blvd, Elizabeth light lunch provided

For information, phone 8362 8443

2013 Dates Tuesday, 8 January

Tuesday, 22 January

Tuesday, 23 July Tuesday, 6 August

Tuesday, 5 February Tuesday, 19 February

Tuesday, 9 July

Tuesday, 5 March Tuesday, 19 March

Tuesday, 3 September Tuesday, 17 September

Tuesday, 2 April Tuesday, 16 April Tuesday, 30 April

Tuesday, 1 October Tuesday, 15 October Tuesday, 29 October

Tuesday, 14 May Tuesday, 28 May

Tuesday, 12 November Tuesday, 26 November

Tuesday, 11 June Tuesday, 25 June

Tuesday, 10 December

Tuesday, 20 August

CALMING THE C IN THE NORTH Friday, 25 January

Friday, 28 June

Friday, 22 February

Friday, July 26

Friday, 22 March

Friday, August 23

Friday, 26 April

Friday, September 27

Friday, 24 May

Friday, October 25

Photo © S.Allen

Photo © S.Allen

Warinilla Outpatients Hepatitis C Treatment Clinic 92 Osmond Tce, Norwood Tuesdays fortnightly 2–5pm Upcoming dates: Jan: 14 & 28 Feb: 11 & 25 Mar: 11 & 25 Southern DASSA 82 Beach Rd, Christies Beach Monday monthly 10am–1pm Upcoming dates: Jan: 6 Feb: 3 Mar: 3 Northern DASSA 22 Langford Dr, Elizabeth Thursday fortnightly 10am–12pm Upcoming dates: Jan: 9 & 23 Feb: 6 & 20 Mar: 6 & 20 Hutt Street Centre 258 Hutt St, Adelaide Wednesday weekly 10am–12pm WestCare Centre 17 Millers Court (off Wright St), Adelaide Wednesday weekly 10.30am–12.30pm

Now That’s a Good Question!

Hepatitis SA workers get asked all sorts of questions about hepatitis. Here’s one of them...

Q: If you already have hep C, can you catch it again?

A: Even if you already have hep C, you can be reinfected with another strain of the virus. Hepatitis C has several strains (genotypes) and the most common in Australia are 1, 2, 3 and 4. Each strain

is different from the others, and some are harder to treat than others. Having more than one genotype at once can make treatment even harder. 

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

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Working with Communities

The Hepatitis SA and APOSS Men’s Pizza Oven Project

Art, Education & Health

APOSS provides support services to pre and post release Aboriginal offenders, including providing short term accommodation, supporting emotional and social wellbeing, educational opportunities and supporting the development of life skills.

The project ran over four weeks in September 2013, including an educational component (covering hepatitis C, hepatitis B and a personal story of ‘the lived experience’) as well as the painting of an outdoor pizza oven, focusing on the themes of culture, 14

land, health and community.

Following completion of the project, a launch was held in October 2013.

painted scenes like Raukken and Monarto (where I used to live). I did a Flinders Ranges scene.

Rick Taylor’s diary provides fantastic insight into the hard work that went into the project.

Week 4: One of the guys helped us out. Everyone did a good job and the mural was nearly finished.

Week 1: We went to APOSS at Kilburn, run by Jim. Nicole and Laney discussed what hep C and B were about, and after that we got people to design drawings for the mural project.

Week 5: During my holiday break I came down on my own time. Weather was crappy—lots of rain. Could only do the Rainbow Serpent and people holding hands.

Week 2: We started to paint the colour base on the pizza oven. While we did this, Jim was preparing the wood oven to have pizzas made for lunch. Nicole just finished painting the last stroke when it poured with rain.

Week 3: Another good artist came to help one of the guys.

I wanted a bush scene, so he

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

Week 6: Worked all day on Monday and Wednesday to complete the mural.

The Launch: A delicious BBQ lunch, cooked in the oven, with lots of staff and clients from APOSS, Hepatitis SA, Aboriginal Sobriety Group and Uniting Care Wesley attending to join in the fun.

All photos by Nicole Taylor

I

n 2013, Hepatitis SA collaborated with Aboriginal Offender and Support Service (APOSS) and local Aboriginal community artist Rick Taylor to run a health promotion project at an APOSS residential site at Kilburn.

Rick’s explanation of the artwork and symbols:

Final word from Rick Taylor:

Snake: a double figure-8, from the ancient Celtic symbol for infinity. The snake is also the Rainbow Serpent, the Aboriginal Creation Spirit, who creates life, water, rivers and plants.

It was an enjoyable mural project and it was great fun!

Thanks to Nicole, Laney and Tess and not to mention Selena for finding them!

Special thank you to the guys (you know who you are) for doing a deadly job painting!

Fish: a totem for the people who live by the sea and rivers (Raukken, Point Pierce, Ceduna, Swan Reach, Naut Naut and Renmark).

Purple and yellow triangles: representing livers, both healthy (purple) and sick (yellow) Wanginas: divine creation spirits from the Kimberley, who always travel in threes and create rain and billabongs. They have no natural form, and assume human shape so we can understand them.

Moon: Bahloo the moon god, new to the Earth, where he came to make human women pregnant and then take them back to the Moon. Biammi, creator of the universe, punished Bahloo.

The sun goddess and Bahloo’s brother threw fire at Bahloo and burned him, then Biammi made him the guardian of the Earth, yet unable to visit it, always trapped looking at it with his burned, ashen face.

People holding hands: representing people of all cultures living in harmony.

See the back cover for more detail in colour.

Final word from Hepatitis SA educators: The Hepatitis SA education team would like to thank the APOSS clients for their brilliant work, Jim (the coordinator of the Kilburn site), Selena and Julie from APOSS, and our own Hepatitis SA peer educator Dean.

Last but not least, a very special thank you to Rick Taylor who put in so much time and effort made this project such a success!

Rick Taylor (community artist) & Nicole Taylor (Hepatitis SA educator)

JANUARY 2014 • HEPATITIS SA COMMUNITY NEWS •

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In Our Library Colour and movement in the library Did you know that we have a collection of audio visual resources in our library for members to borrow? We have DVDs with general information about hepatitis as well as keeping healthy, eating well, treatment, drug awareness, mental health and more All resources in our library are available for borrowing by members: just call us on 8362 8443 or 1300 437 222 (SA regional callers) to find out how you can access these titles and many others...

The A-Z of hepatitis (Rural Health Education Foundation): includes a panel discussion, cross cultural information and a range of printable resources Turning point (Hepatitis SA): a personal confrontation with hepatitis c - a film by young people for young people

prevention in Arabic speaking and East African communities Strong body healthy lifestyle (Rural Health Education Foundation): contains videos and materials from Indigenous communities including cooking demonstrations, health education pamphlets, healthy lifestyle songs and dances and interviews Hep C the movie (Link Youth Health Service): ‘vox pop’ interviews with young people, music, and a ‘test your knowledge’ quiz game The guerrilla gardening movie (Handheld Camera Productions): documents the chaotic, quirky, creative, sometimes messy and amazing guerrilla gardening scene in Adelaide Keeping the blues away (Uni of Adelaide): a guide to reducing the chances of relapsing into depression

sex, drugs and alcohol this 20-minute film tells the stories of the decisions they make and why The rhythm exchange (Hepatitis SA, Vietnamese Community in Australia & Peace Multicultural Services): A community celebration to mark

national Hepatitis Awareness Week Back on Track Vietnamese Community in Australia, SA Chapter): a music DVD for and by young Vietnamese peoples is aimed at raising awareness of alcohol and other drug issues

Helpful Hints For Advanced Liver Disease Having a close relationship—family, friend or work colleague—with someone who has advanced liver disease is more often than not very challenging, particularly if you do not know where to get help and information from.

At times you are left feeling as though your loved one’s health is in your hands, which comes with an extraordinary amount of pressure.

Living with advanced liver disease is arguably even more difficult, as individuals face many life-changing challenges and struggle to keep their independence.

The liver is one of the most important organs in the body and complications arise when it is not performing, including lifestyle changes, health conditions and emotional difficulties.

Shannon Wright at Hepatitis SA has written Living with Advanced Liver Disease: Helpful Hints, which provides useful information and help for those with liver disease.

The guide touches on topics such as eating, nutrition, itchy skin, memory loss, confusion, emotions, alternative transport and ambulance services.

Shannon put together the guide with information from health care professionals in the field, people living with advanced liver disease, and their family/carers.

Reading through the guide, I can relate to each topic as my family member living with advanced liver disease has experienced them all at some point (see issue 60 of this magazine for more).

The guide has provided me with information I had not previously known about and also elaborated on what I was already aware of.

Bridging differences, enhancing understanding (Centre for Culture, Ethnicity and Health): a family oriented health project on hepatitis c

16

Choosing right with sex, grog and drugs (An Astrid Clark Production): It’s Friday night and 2 young girls are out with their boyfriends. Faced with choices about safe

• HEPATITIS SA COMMUNITY NEWS • JANUARY 2014

There need to be more such guides available for those experiencing advanced liver disease, as it is a great way to educate and offer information to individuals who are searching for help and assistance.

To get a copy of Living with Advanced Liver Disease: Helpful Hints, please call 1300 437 222 or email cecilia@hepatitissa.asn.au.

Danella Smith

Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis.

Street: Mail: Phone:

Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepatitissa.asn.au

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Information and Support Coordinator: Deborah Warneke-Arnold Hepatitis SA Help Line Volunteers: Debra Karan Louise Michele Will Education Coordinator: Dr Tessa Opie

Useful Services & Contacts Hepatitis SA Free education sessions, printed information, telephone information and support’, referrals, clean needle program and library.

Cecilia Lim/Hepatitis SA

Hepatitis SA Community News offers hearty congratulations to the talented, dedicated and fundamentally amazing Fred Robertson, currently Peer Educator Mentor and a long-time Info & Support Line volunteer, for having given 15 years of service to the hepatitis community of SA. Fred is one of our most valuable assets, having been with the Hepatitis C Council and then Hepatitis SA from almost the beginning, and if he doesn’t stay with us for at least another 15 years, we’ll all be the poorer for it.

Front cover: Derived from an image by Vectorportal.com, used under a Creative Commons license Back cover: Photo by Nicole Taylor (see p14) Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au.

Educators: Claire Hose Elaine Lloyd Nicole Taylor Shannon Wright Hepatitis B Coordinator Jenny Grant

Editor: James Morrison Non-staff Contributor: Danella Smith

Information and Resources Coordinator: Cecilia Lim Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene

Contents

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline 1300 437 222 (cost of a local call)

Adelaide Dental Hospital A specially funded clinic provides priority dental care for people with hepatitis C with a Health Care Card.

Call Hepatitis SA on 1300 437 222 for a referral.

AIDS Council SA ACSA has closed down.

See p3 of last issue for details and replacement service contact details.

ICT Support Officer: Bryan Soh-Lim

1

CNP in the South

beyondblue

Librarian: Joy Sims

2

Success on a Shoestring

Mental health information line

Outreach Hepatitis C Peer Education & Support Project Coordinator: Lisa Carter

4

Reaching In

1300 224 636 www.beyondlbue.org.au

5

Nursing Webinars

6

Carol’s Story

8

Looking After Them? Study

10

Lou Reed & Hep C Awareness

Peer Educator Mentor: Fred Robertson Peer Educators: Dean Karan Mark Penni Will CNP Peer Project Coordinator: Michelle Spudic CNP Peer Projects Officer: Carol Holly CNP Peer Educators: David Kylie Mark Nikkas Patrick Penni Sue BOARD Chairperson: Arieta Papadelos

13

What’s On

14

Art, Education & Health

16

In Our Library

Secretary: Lindsay Krassnitzer

1300 131 340 Community Access & Services SA (a service of the Vietnamese Community in Australia, SA Chapter) Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8447 8821

Treasurer: Howard Jillings Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Carol Holly

Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service.

Catherine Ferguson Jeff Stewart

Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. 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 Hepatitis SA members and the general public.

Department for Health and Ageing, SA Health has contributed funds towards this program.

Bring back life form. Priority One. All other priorities rescinded.

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

P.E.A.C.E. HIV and hepatitis education and support for people from non-English speaking backgrounds.

1800 650 890 www.headspace.org.au

(08) 8245 8100

Lifeline National, 24-hour telephone counselling service.

Positive Life Services and support for HIV positive people – including treatments information and peer activities.

13 11 14 (cost of a local call) www.lifeline.org.au

(08) 8293 3700 www.hivsa.org.au

Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers.

SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

13 14 65 MOSAIC Counselling service For anyone whose life is affected by hepatitis.

(08) 8223 4566 Nunkuwarrin Yunti A city-based Aboriginal-controlled health service with clean needle program and liver clinic.

(08) 8406 1600

(08) 8351 7626 SAVIVE SAVIVE has closed down. Its role has been taken on by Hepatitis SA: please contact us for more information on 8362 8443.

The Second Story Free, confidential health service for youth aged 12 to 25.

Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100

Hepatitis C Community nurses Care and assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for appointment.

Central & North:

Margery - 0423 782 415 margery.milner@health.sa.gov.au Debbie - 0401 717 971 deborah.perks@health.sa.gov.au Jeff - 0401 717 953 jeffrey.stewart@health.sa. gov.au Trish - 0413 285 476 South:

Rosalie - 0466 777 876 rosalie.altus@fmc.sa.gov.au Emma - 0466 777 873

Are you interested in volunteering with Hepatitis SA? Give us a call on 08 8362 8443 or drop us a line at admin@hepatitissa.asn.au. We rely on volunteers for many of our vital services.

#62 • December 2013

Community News

LOU REED & HEP AWARENESS Art & Health • Reaching In at Glenside

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