#65 HepSA Community News

#65 • November 2014

Community News

World Hepatitis Day 2014 LORA in Port Lincoln • Treatment Urgency

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FREE! Please take one

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21 YEARS!

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

Street: Mail: Phone:

Fax: Web: Email:

Next year, Hepatitis SA (formerly the Hepatitis C Council of SA) will be celebrating its 21st anniversary. Please get in touch with us with yo ur memories of the organisa tion’s early years, or with any ideas of what you’d like to see us do to celebrate our first two de cades.

Email us at editor@hepa titissa.asn.au

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

Amita Gurung

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

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

Aboriginal Projects Coordinator Darrien Bromley

About the Cover: I ♥ MY LIVER rock candies, produced for World Hepatitis Day and given away at our various events.

CNP Peer Projects Officer Carol Holly Kylie MarkT Sue

Education Coordinator: Tess Opie Educators Claire Hose

13 11 14 (cost of a local call) www.lifeline.org.au Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers.

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CNP Peer Projects Coordinator Michelle Spudic

CNP Peer Educators Bernadette Justin Andrea Margie MarkB1 MarkB2 Nikkas Patrick Penni

Lifeline National, 24-hour telephone counselling service.

Shannon Wright

Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au.

Editor: James Morrison Non-staff Contributor: Danella Smith

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. beyondblue

Contents

Mental health information line

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Catching Up on Treatment

1300 224 636 www.beyondlbue.org.au

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Hep B Action Plan

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

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

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

(08) 8293 3700 www.hivsa.org.au SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

(08) 8351 7626 SAVIVE SAVIVE has closed. Peer run CNPs are now run from Hepatitis SA. (08) 8362 8443.

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

(08) 8406 1600

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

World Hepatitis Day 2014

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

Vincentian Centre Men’s night shelter run by St Vincent dePaul Society.

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Hepatitis in Parliament Strategic Plan Launched

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

1300 131 340

(08) 8245 8100

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Liver Deaths Double

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Mark’s Story

Community Access & Services SA Alcohol and drug education; clean needle program for the Vietnamese and other communities.

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

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Homelessness Expo

(08) 8447 8821

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

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LORA in Pt Lincoln

Peer Educator Mentor: Fred Robertson

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What’s On

Peer Educators: Dean Karan Penni Will

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

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

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In Our Library

1800 650 890 www.headspace.org.au

South

Hepatitis B Coordinator Jenny Grant Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold Hepatitis SA Helpline Volunteers: Louise Debra Karan Information and Resources Coordinator: Cecilia Lim Publications Officer James Morrison

Librarian Joy Sims

Information and Resources Officer: Rose Magdalene IT Support Officer Bryan Soh-Lim Information and Resources Volunteers: Michelle Jo

Mark

BOARD Chair Arieta Papadelos

Vice Chair Bill Gaston

Secretary Lindsay Krassnitzer

Treasurer Howard Jillings

Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Nicci Parkin Jeff Stewart

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Catherine Ferguson Dr Judith Peppard

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.

Assistance hotline: 1300 729 202

Central & North

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.

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News

Catching Up with the World

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20 years on, a call for next-generation treatment

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n the 20th anniversary of the inclusion of interferon on the Pharmaceutical Benefits Scheme (PBS), as the first subsidised treatment for hepatitis C, Hepatitis SA has backed Hepatitis NSW’s call on the Commonwealth Government to approve the next generation of hepatitis C drugs.

“While interferon, and later pegylated-interferon, has saved the lives of many people over the past two decades, people living with hepatitis C in Australia need access to new, more effective, shorter duration, easier-totake and lower side-effect treatments,” Hepatitis NSW CEO Mr Stuart Loveday said.

Interferon, which was revolutionary when it was first listed on 1 October 1994, has always required long treatment times (of at least 6 months), been associated with significant and often debilitating side-effects, and even then only provided a modest chance of cure.

The 2013 addition of either telaprevir or boceprevir to

interferon and ribavirin for the treatment of people with hepatitis C genotype 1—the most common genotype in Australia—has increased cure rates, and, in some cases, reduced treatment duration, but still causes significant side-effects.

The first of the next generation of hepatitis C treatments— sofosbuvir—offers the potential for much shorter treatment duration (used with interferon), or even interferonfree treatment, depending on the genotype of hepatitis C being treated, as well as even higher cure rates for most individuals.

Sofosbuvir was approved for use by the US FDA in December 2013 and by the European Union in January 2014, but was rejected by the Australian Pharmaceutical Benefits Advisory Committee (PBAC) at its July 2014 meeting.

“Hepatitis C globally is undergoing a treatment revolution. Unfortunately, people living with hepatitis C in Australia are being left behind,” Mr Loveday said.

Just how far behind is illustrated by the decision of the European Medicines Agency’s Committee for Medicinal Products for Human Use, on September 25 2014, to recommend approval for sofosbuvir/ledipasvir, a fixed-dose, once-daily pill for the treatment of hepatitis C genotypes 1, 3 and 4—all without interferon.

The US FDA is expected to make a decision on sofosbuvir/ledipasvir by the end of the year.

“People living with hepatitis C in Australia deserve equal treatment access to their overseas counterparts.

Instead, they are being made to wait, already for many months but potentially for years, for these life-saving new drugs to be approved,” Mr Loveday said.

“The Commonwealth Government should be acting now to ensure that the 1 in 100 Australians living with hepatitis C receive access to the next generation of hepatitis C treatments, rather than, in many cases, being left to rely on interferon.”

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News World Hepatitis Day 2014

Hep B Action!

The Hon. Tung Ngo, MLC, represented the SA State Government at the launch of the South Australian Hepatitis B Action Plan 2014–2017 in July, which was part of Hepatitis SA’s celebration of World Hepatitis Day this year. Mr Ngo has kindly allowed us to present an edited transcript of his speech.

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hank you for inviting me today to release the firstever South Australian Hepatitis B Action Plan. The Action Plan is a joint initiative between SA Health and the non-government sector.

I offer my thanks and congratulations to all members of the Project Steering Committee. It is great to see SA Health and the NGOs once again working together on such a great initiative.

I would also like to express our thanks to Associate Professor Ben Cowie and Ms Jennifer MacLachlan from the World Health Organisation, Hepatitis B Reference Laboratory in Victoria for their direction and input on the project, as well as everyone who contributed to the development of the Action Plan. It is a great strength of the Plan that there was so much interest in its development from clinicians, the government and non-government sectors,

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News

surveillance officers, and researchers.

This Action Plan builds on SA Health’s Aboriginal Health Care Plan, the Second National Hepatitis B Strategy, and the Fourth National Aboriginal and Torres Strait Islander Blood-Borne Viruses and STIs Strategy.

Internationally, chronic hepatitis B is the single most important risk factor in the development of liver cancer, with around 600,000 people dying each year due to the consequences of hepatitis B infection.

Our Hepatitis B Action Plan has been developed in the context of a greater understanding of the longterm health impacts of chronic hepatitis B infection on liver health, and the need for regular monitoring to reduce liver disease and liver cancer.

Around 14,500 people in South Australia live with chronic hepatitis B, and it’s estimated that around half of these people are yet to be diagnosed, and so are yet to receive regular liver monitoring to prevent liver disease or antiviral medications.

While progress has been made in Australia, through immunising young people for hepatitis B, there are still around 400 chronic hepatitis B cases diagnosed in the community each year.

Without regular monitoring and treatment, around one in five people will die from hepatitis B-related liver disease or liver cancer. Hepatitis B infection is also one the primary factors leading to liver transplants in Australia.

Hepatitis B is a blood-borne virus, where most people show no obvious symptoms, and which can progress slowly over decades. It is most frequently passed unknowingly from mother to child during childbirth, and, less frequently, through other blood or body fluid contact.

The likelihood of developing future liver disease increases dramatically if a person is infected at a younger age.

Hepatitis B-related liver disease disproportionally affects some of our most vulnerable or hard-to-reach groups in the community.

In Australia, 70% of people living with chronic hepatitis B were born in locations where the virus is more common.

This includes people who are from parts of southern Europe, sub-Saharan Africa and east and north Asia. As I was born in Vietnam, I am more likely to have contracted hepatitis B. I realise that I do not know as much as I should about this disease and I hope to learn more today.

Aboriginals and Torres Strait Islanders are also disproportionately affected by hepatitis B, particularly

those who live in rural and remote communities. Other groups we know to be at higher risk of hepatitis B as an adult are men having sex with men, intravenous drug users, prisoners, and sex workers.

This Action Plan is focused on building statewide coordination for hepatitis B services, increasing service capacity, embedding hepatitis B management in primary health care, and increasing prevention, testing and treatment efforts.

To ensure we can achieve these aims, it will be vitally important that we work in partnership with people who are affected by hepatitis B. SA Health remains committed to ensuring that we work together to make sure we are responsive to individual differences, culture and meaning.

There is a need for strong partnerships for an effective statewide response to hepatitis B, and I am confident that this sector will continue working in partnership with government and affected communities to achieve progress in this area.

It is with great pleasure that I hereby officially launch the first South Australian Hepatitis B Action Plan 20142017, and open this “Love Your Liver Marketplace” event, and again thank all those who contributed to its development.

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World Hepatitis Day 2014

World Hepatitis Day 2014 Love Your Liver Community Marketplace

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or World Hepatitis Day 2014, Hepatitis SA and PEACE Multicultural Services (PEACE) jointly organised the inaugural Love Your Liver Marketplace community event on 31 July.

The plan was to bring together community members in a casual setting, provide some basic hepatitis B information and share lunch together.

The Honourable Tung Ngo MLC was invited to the Marketplace, which was held at Relationships Australia SA (RASA) Hindmarsh, to launch the first South Australian

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Hepatitis B Action Plan 20142017, and open the event (see p2).

Hepatitis SA and PEACE planned for the event to be interactive and fun to encourage full participation from the groups attending.

Four training rooms were set up with information and activities covering transmission, testing, treatment and living with hepatitis B. The staff and volunteers from PEACE were on hand to assist with translating information to the community.

Invitations went out far and wide, with buses organised to transport large groups of people from schools, colleges and community groups. The event was a huge success with over 140 community members attending, from several different cultural backgrounds.

Feedback received from the event will be taken in to consideration when Hepatitis SA and PEACE plan for the second World Hepatitis Day Love Your Liver Community Marketplace in 2015.

Jenny Grant

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Hepatitis SA also spent much of World Hepatitis Day in Rundle Mall, giving out hepatitis information and engaging passers-by—like Lord Mayor Stephen Yarwood (above right)—in various activities like henna tattooing, tests of skill, Oliver-themed bowling, and even a ukelele flash mob (above left): see http://tinyurl.com/ukemall for all the action!

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Hepatitis in Parliament

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outh Australian members of parliament were offered insights into the challenges of viral hepatitis in Australia at a forum that was part of the national hepatitis awareness campaign in JulyAugust.

Forum participants were given copies of the “Liver Danger Zone” report and a talk on the basics of hepatitis (L to R) Forum presenters Deborah Warneke-Arnold, B and C including treatment, Jeff Stewart and Kerry Paterson with hosts Tammy transmission and prevalence Franks, Stephen Wade and Gerry Kanderlaars in Australia. The highlight however, was undoubtedly a personal story shared by a positive speaker.

The forum was jointly hosted by Greens MLC Tammy Franks, Labor MLC Gerry Kanderlaars and Liberal MLC Stephen Wade.

Strategic Plan Launched

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epatitis SA has launched its new Strategic Plan 20142019. The heart of the plan is based on the Ottawa Charter for Health Promotion, which provides a framework for effective action and facilitates the active participation of affected communities and individuals to increase their influence over the determinants of their health and the formulation of public policy that supports healthy behaviours.

The plan is designed to ensure that the physical and emotional wellbeing of South Australians living with

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viral hepatitis is optimised and that the transmission of viral hepatitis is prevented.

Hepatitis SA’s mission is to lead the community response to viral hepatitis in South Australia, in keeping with our core values: • Participation of people affected by viral hepatitis • Respect for diversity and the context of people’s lives • Partnership

All Hepatitis SA members should have received a copy in the post. If you have not, please get in touch with us and we will send one out to you, or else you can download it from hepatitissa. asn.au/resources/downloads/ category/2-strategic-plan.

See more on the Ottawa Charter at www.who.int/ healthpromotion/conferences/ previous/ottawa/en/.

• Creativity and innovation • Evidence-based practice • Accountability and transparency

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Liver Deaths Double Annual Surveillance Report 2014 makes for alarming reading

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he estimated number of people dying from liver disease related to hepatitis C infection has more than doubled over the last 10 years, according to the HIV, viral hepatitis and sexually transmissible infections in Australia Annual Surveillance Report, which was released by the Kirby Institute at September’s Ninth Australasian Viral Hepatitis Conference in Alice Springs.

Australia and should not be taken lightly,” said Associate Professor David Wilson, lead author of the national report.

“The number of people dying from advanced liver disease related to their hepatitis C infection has more than doubled over the last 10 years. It will only get worse as a wave of many people with the infection develop more severe disease in years to come.”

Figures from the report indicate a massive disease burden caused by the hepatitis B and hepatitis C virus infections affecting Australians. In 2013, an estimated 210,000 people were living with chronic hepatitis B infection and 230,000 people were living with chronic hepatitis C infection in Australia. Among those with chronic hepatitis C, 80,000 people have moderate-to-severe liver disease, including 15,900 with cirrhosis. An estimated 630 people died from hepatitis C liver failure and liver cancer in 2013, 160% greater than the number of deaths 10 years ago (250 in 2003).

Hepatitis B and C infections were the underlying causes of liver disease in 75 liver transplants and an estimated 1,000 deaths in Australia in 2013.

“These infections are a major public health problem in

“This places an enormous burden on the health of our nation and on our resources, and really speaks to the need for improved access to effective treatments for these infections,” said Associate Professor Wilson. “Not only will this greatly improve the health of individuals with liver disease, but treatment can also have a preventative role in reducing new infections.”

The full report can be downloaded from kirby.unsw. edu.au/sites/default/files/hiv/ resources/ASR2014.pdf.

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Mark’s Story A 30-year journey with hepatitis

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’m now 55 years old—my journey with hepatitis began more than three decades ago. When I was in my late teens, I got hepatitis A, which knocked me around for about six weeks. I had to stay off work for that length of time.

I was told not to drink for six months. I got better, and basically that was the end of hepatitis A. Three years later, just before my twenty-first birthday, I ended up getting hepatitis B. I got it through intravenous drug use. I was involved in the entertainment, arts, and television industry where drug use was very common at the time. Progressing from one drug to another was just a matter of time.

A Brief History of SAVIVE

I got very sick, was very yellow in the eyes and skin.

As soon as the doctor saw me, he did a blood test and I was sent to the Northfield Infectious Diseases Ward [Editor’s note: Northfield Infectious Diseases Ward was a part of Hampstead Rehabilitation Centre, which was closed in the early 1980s]. My infection was so extreme I was on bed rest for two weeks. The doctors were concerned that I might have kidney failure, due to the bile my body was pumping through. After that, I ended up getting a chronic condition.

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Seven or eight months after getting infected with hepatitis B I got what I thought was a relapse of the acute hepatitis B infection. In actual fact it was hepatitis C. I ended up in the Infectious Diseases Ward again. When they tested me, they told me I had non-A non-B hepatitis, which is how hepatitis C was identified back then—you have to remember that hep C was not identified until the late 1980s, and there was no test for it until the early 1990s.

was officially confirmed that I had hepatitis C. I was given a biopsy, and they put me on the waiting list to have the treatment.

I recovered from the acute infection, and was told not to drink for a year. Everything went back to normal, I went back to work. The only thing I had to do was go to a liver specialist every 12 months to see how the liver was going.

Shortly after I started treatment, I had injections of old-style interferon three times a week. After twelve weeks, it was found that I did not respond. I expressed my interest in having any other treatment whenever it became available. The next treatment I tried was with pegylated interferon, which required an injection once a week. I got to 28 weeks, and once again I did not respond. Some time later they put me on another treatment for 48 weeks. At that point I had stage two fibrosis. I did not respond to this last treatment either.

At the time there was not much information about hepatitis C, so I lived my life as I pleased. I drank and went out to party. I did whatever young people did. After about 15 years, I went into hospital with a severe irritable bowel syndrome, which is something that a lot of people with hepatitis C get. My condition was so extreme that I bled internally. At that stage they asked me whether I was ever tested for hepatitis C, which I wasn’t. I only knew that I had non-A non-B hepatitis at the time. They tested me and it

I heard that there was some success in the US with new treatments called protease inhibitors. I waited for three years for the treatment to come to Australia, and for me to be eligible. Unfortunately, during that time, my liver developed cirrhosis. The doctors said I needed to do more blood tests, in order to see if I fit the criteria for the new treatment. After the tests, I got a phone call asking me to come in and see the specialist straight away. I could tell something wasn’t quite right. The doctor told

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Personal Story

me, “I’m sorry, but you can’t go on treatment. Your liver is decompensating.”

I was going into liver failure.

I started getting swelling of the feet. I no longer could tolerate alcohol in any way. I was putting on weight, which was mostly due to fluid retention.

I noticed things weren’t quite right. I was told to go straight to the liver transplant clinic at the Flinders Hospital. There I was evaluated using the MELD score [Model for EndStage Liver Disease, which calculates if and how urgently a transplant is needed], to see if I needed a transplant. A lot of my symptoms were masked by the painkillers I was taking for the irritable bowel syndrome, so I was not able to tell that something was not right earlier.

I was happy with either, because I didn’t want to wait too long. I had a common blood type, and was told that I may have to wait a long time

for a transplant. However, I was lucky and I got one within three months.

After being approved for a transplant, I had to go to the

At Flinders I saw a liver specialist. He explained everything to me in detail and I was briefed on what I needed to know. The specialist gave me a choice of whether to have the liver transplant or not. I said I would rather do it earlier than later, because my body would handle it better. I was given an option of having a liver infected with hepatitis C, which might become available faster, or to wait longer for a healthy liver.

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(continued from p9)

hospital as an inpatient for five days. They did every test possible to make sure that my body could deal with the transplant. They checked my heart’s ability to handle stress, my lung capacity, and they even gave me a psychiatric assessment. This was necessary to make sure I could survive the operation.

They concluded that I was healthy enough to go ahead with the transplant.

While waiting for the transplant I got encephalopathy, which is a build-up of ammonia in the brain. This caused me to have some interesting hallucinations. One day I was laying in bed and my Persian cat hopped up next to me; he was dressed in a camouflage flak jacket with explosives wrapped around him. He then proceeded to chat to me, saying, “Mark, I have just blown up the AMP building in Adelaide.” I asked him why, and he said that he did it for me.

I knew at this stage that things were getting pretty serious.

Towards the very end I got some horrific leg cramps, which would wake me up. It could go on for hours, and the pain didn’t go away no matter what I did. I was at the stage where I would bang my head against the wall. I was single at the time, which meant I didn’t have any assistance at home. Due to my health deteriorating so much, I had 10

to move in with my mother.

We made an arrangement such that she would look after me while I got through my illness, and I would look after her after I recovered. I could not have done it without her.

I also had my sister help me a huge amount. She came around at least twice a week and made sure we had food in the fridge. She helped us a lot in other ways as well.

It is essential to have a good support system while you go through something like this.

I got a phone call at six o’clock one night telling me that I had got a transplant.

I was told that I needed to get into Flinders Medical Centre within 90 minutes. I started shaking—it was like being hit in the head with a sledgehammer. I was shellshocked: I couldn’t drive, I couldn’t function, and my sister had to drive me into the hospital. I was very agitated, but the staff at the hospital helped me deal with it.

The preparation for the transplant took around eight hours—they needed to make sure that there weren’t any problems. The operation itself also took around eight hours. There were minor complications, which is fairly usual for transplant operations. I stayed in hospital for twelve days, and I recovered reasonably well.

The liver that I ended up getting was hepatitis C-free,

which was fortunate for me.

However, I still had the virus.

I was taking anti-rejection drugs for the new liver, but it caused the virus to run rampant because my immune system was suppressed. This does not necessarily happen with everyone, but in my case it did. In about three months time, I believe I had stagetwo fibrosis again. Due to this, I had to take a course of antiviral drugs to try and get rid of the virus before it did any more damage.

I did a PCR test six months later to see if the virus was gone. By the grace of God, the virus was gone. I was told that I was cured.

I have battled this disease for 30 years. For about a decade during that time I could not work. After the treatment was over, I felt like I could start doing things again. My brain was no longer foggy from the antiviral drugs. I enrolled myself into a Community Services certificate. I also started doing work as a peer educator at Hepatitis SA. I help people with hepatitis C, by giving them all the information they need to make informed choices. I advocate having treatment as early as possible, because it gives people the best chance of success. I try to support people in every way possible by using my experience.

Interview by Alyona Haines

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Shelter At the Homelessness, Health and Housing Expo

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helterSA hosted Homeless Connect, the Annual Homelessness, Health and Housing Expo, in Whitmore Square, Adelaide, on a warm Wednesday in October.

Among our other activities, people entered the Little Liver Quiz. The two correct entries drawn received generous prizes provided by Charlesworth Nuts and BRITA water filter jugs and bottles.

Stalls were held at the event

by Hepatitis SA and many other agencies that provide information and support to our homeless population, enabling them to connect with essential and ongoing services relating to housing, health, employment, government support and legal aid.

There was an array of live music performances by talented bands and our mascot, Oliver, especially enjoyed dancing to the amazing sounds of the ‘PIPE GUY Adelaide’ (if you haven’t heard him

busking in the Rundle Mall, check him out on Youtube at www.youtube.com/ watch?v=0vsTIR4HXTM).

Approximately 400 people who are homeless or at risk of homelessness enjoyed free morning tea and lunch, as well as many other activities, giveaways and prizes from 45 different agencies.

Lisa Carter

The lovely weather and relaxed atmosphere provided an opportunity for our staff and volunteers to convey information regarding viral hepatitis, transmission risks, symptoms, testing, treatment and living well.

Hepatitis SA was able to give away Nippy’s Juices throughout the day to all those in attendance, due to their kind donation of orange and apple fruit juices.

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LORA in Port Lincoln

Telehealth-based community care

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he Liver Outreach Australia (LORA) program is a community outreach, telehealth-based model of care for the assessment and treatment of people with chronic hepatitis C. The program is especially useful for people in rural or regional areas where there is both a high prevalence of chronic hepatitis C and the low treatment rates which can be caused by long waiting lists for services and lengthy travel demands to hospitals where treatment is available.

LORA is sponsored by pharmaceutical company Janssen, but is run under the guidance of an independent steering committee co-chaired

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by Professors Andrew Lloyd of the University of NSW and Geoff McCaughan of Royal Prince Alfred Hospital.

Experienced nurse Donna Sellen runs the LORA program in the Port Lincoln area, and was kind enough to talk to Hepatitis SA Community News about her work.

How does treatment work under LORA? We have it set up so that, where possible, everything is done from Port Lincoln.

That way people who can’t travel or might be put off by having to go to Adelaide to see a specialist can still get assessed and treated.

We do teleconferencing

with a specialist—they are in Adelaide speaking and listening to the client through computer screens. After the specialist has gone through everything with the client and checked all the information that I’ve sent across—like the patient’s mental health state, their general wellness, whether they’re using alcohol or any other drug, family history, all the work-up, all the blood tests, all the scans and FibroScans—the doctor writes a script, the medications are sent from Adelaide and I go through the treatment initiation here. Dr K Ajao, a local GP with an interest in hepatitis C, has come on board as the LORA GP to assist with any medical issues

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Regional Treatment

that may arise before, during and after treatment.

into it, and at first I thought, “Oh no, another job!”

throughout the course of their medication.

And you’re based in Port Lincoln. How far afield can you cover?

I’ve really enjoyed it, and I’ve really felt that it’s one part of health that you can actually offer someone a cure. Before LORA began, I had set up a sort of Hepatitis treatment program of my own in collaboration with QEH, but the issues with getting people to Adelaide to have specialist appointments and the subsequent FibroScans, and then returning regularly for checkups with a specialist— it was a very difficult thing financially for clients. So when LORA came along I jumped at the opportunity to have treatment more easily accessible.

So it’s very much an ongoing relationship?

At this stage it’s for anyone in the immediate Port Lincoln area, because it’s a pilot program. It’s a trial for two years, and then after that hopefully the governments and the states will talk about taking it on and using the LORA format for major areas.

Are you the only SA site?

Yes, we were very lucky to be selected. There are eight sites around Australia, all with FibroScans. All site nurses have been trained to perform the FibroScans. Some sites started last year. I only started in Port Lincoln from April.

The trial finishes in June 2015. And everyone on the trial will be followed through until they’ve completed their treatment. They won’t be left.

So how did you come to be running LORA there?

I’ve been here in Port Lincoln for a number of years, working with the Aboriginal community with bloodborne viruses and STIs. We had a doctor involved with our clinic who was doing public health, and he wanted to know what the bloodborne virus status was of the Aboriginal community at Port Lincoln. I was asked to look

The Queen Elizabeth Hospital and I have been able to work well together in the past, and now with the LORA program, the Viral Hepatitis Nurses and specialists from the QEH and the Royal Adelaide Hospital are involved, and it works really well. And of course, that’s essential. I’m not a specialist, and sometimes I need to discuss my concerns or queries with those who know more.

It’s about using the services that are available to me.

They’ve been very good at supporting me and assisting with having my clients ready and maintaining their health and their wellbeing

Yes, it’s not just enrolment in a treatment program. It’s not just the specialist review. It’s ongoing. Every time I have an appointment or telephone call to any of the clients on treatment or treatment monitoring, I send a copy of the pro forma to the respective hospital, so they can see that I’m assessing the person and asking them the necessary questions. It’s not just, “Oh, well, here’s next month’s medication. I’ll see you in a month’s time!”

I’ll ask about relationships, I’ll ask about their mental state. I ask about contraception. I ask about any issues that they’ve noticed in the last week, and check their wellbeing. I also assess the person as to how much support they’ll need to stick to the treatment. You can sometimes sense with people whether you have to let them run with it, or whether you have to nurture them through it.

I feel like a stalker when they’re first on treatment, because I’m phoning and texting, “How are you feeling today? How are you going with your medication?”

And you need to take into account sensitivities around people too, for example some people don’t like phone calls, but would prefer a text. And

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Regional Treatment

always remembering that they might not have many other people in their lives that they can talk to about Hepatitis C. It’s nice to allow the time to just talk as there is so much misinformation out in the community.

It’s taking an interest in the whole of life, not just seeing them as Viral Patient 73 or whatever.

Yes, I think that’s important.

I hope it makes them feel like I’m interested, because actually I really am interested!

For the clients, it’s real nice to learn that there’s someone in your near vicinity that can answer your questions. Or

sometimes you just need to be able to vent a lot of frustrations with your feelings with someone who understands what’s involved. And my job, it’s also about kickstarting the person’s engagement with multiple medical services in the community, like dieticians, to try and get them on a care plan, and dental care and so on.

It’s amazing the difference that some people experience, the transformation over the 6 to 12 months they’re on treatment. It’s been quite astounding for some of my clients! Quite often they actually don’t know a lot about the hep C, but they’ve been living with it and

thinking about it for a long time. People can come in convinced that they’re dying, that there’s no treatment that will work, and then they can find themselves with a cure.

I mean, not that it’s perfect for all cases, but I think people just don’t realize how effective it can be.

And it’s not just about LORA. I do say to people, “Look, if you feel that you’re uncomfortable with me, you can do this through the major hospitals in Adelaide. Even if you don’t come through me, if during the course of your treatment that you’d like to just have some support or just ask a question, just give me a call.” I give them all my cards. For my figures and for the program, it would be great if everyone wants to come on it (laughs), but just because they don’t doesn’t mean that I’m not interested in how well they do. It’s a matter of getting them better however they end up going about it.

That must be good, seeing that change.

I’m loving it! I come to work each day looking forward to it. I don’t think a lot of people have that.

James Morrison

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• HEPATITIS SA COMMUNITY NEWS • NOVEMBER 2014

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What’s On Calming the C: Now at Port Adelaide!

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

Photo © S.Allen

Photo © S.Allen

Affected by hepatitis C?

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

Ring us on 8362 8443 for dates and times for 2015 Hepatitis C peer educators are also available to provide information and support to clients at the following services:

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

Ring us on 8362 8443 CALMING THEthe C INC THE for Calming datesNORTH in 2015!

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

Warinilla Outpatients Hepatitis C Treatment Clinic 92 Osmond Tce, Norwood Tuesdays monthly 2–5pm Upcoming dates: Nov 18 Dec 16 Jan 13 & 27 Feb 10 & 24 Southern DASSA 82 Beach Rd, Christies Beach Monday monthly 10am–1pm Upcoming dates: Nov 10 Dec 8 Jan 5 Feb 2

Northern DASSA 22 Langford Dr, Elizabeth Thursday fortnightly 10am–12pm Upcoming dates: Nov 13 & 27 Dec 11 Jan 8 & 22 Feb 5 & 19 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

NOVEMBER 2014 • HEPATITIS SA COMMUNITY NEWS •

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In Our Library Looking for resources in multiple languages?

Our library now contains a great range of informative and reliable resources in a number of languages. We’ve been collecting booklets, DVDs, CDs, books and leaflets for various community groups –these resources can be borrowed from our library in hard copy and most are also available online and free to access.

To make it easy to find the online resources we’ve created a ‘quicksearch’ link in our online catalogue...just go to the library homepage (hepatitissa.asn.au/ library/) and click on the ‘Visit our Catalogue Search page’ link:

Frequently asked questions about hepatitis C, published by HCV Advocate, San Francisco.

Available in Chinese, Korean, Russian, Somali and Spanish Love Your Liver, published by Hepatitis SA, Adelaide, 2014.

Available in Pitjantjatjara Protect your baby for life – when a pregnant woman has hep B, published by the Center for Disease Control, Atlanta, 2010. Available in Burmese, Chinese, French, Hmong, Khmer, Korean, Lao, Russian, Spanish, Tagalog and Vietnamese.

Be informed, be safe, be healthy, published by the Centre for Culture, Ethnicity and Health, Melbourne. Available in Amharic, Arabic, Burmese, Chinese, Karen, Khmer, Lao, Somali, and Vietnamese.

And here are some of the resources that you can borrow from our library:

The ‘Quicksearch’ links are on the right hand side of the page:

Just click on ‘Groups & settings’ then on ‘Multicultural: language other than English’—this will open up a list of online resources. Click on any title to find more information and to link to the actual resource.

Here are examples of some online resources:

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Top: Everybody’s Business: A resource in HIV, AIDS and Hep C (in Thai, Somali, Khmer, Indonesian, Vietnamese, Mandarin, Arabic and Spanish); Change of our Lives (in Vietnamese); Hepatitis b – what you need to know (in Arabic, Chinese and Vietnamese); Together we are strong (in Vietnamese); Living a positive life (in Arabic, Cantonese, Croatian, Indonesian, Khmer, Mandarin, Spanish, Thai and Vietnamese) Front: Hep b and you (in Arabic, Mandarin, Vietnamese); Living well with hepatitis c (in in Arabic, Burmese, Chinese, French, Italian, Khmer, Spanish, Swahili, Thai and Vietnamese) and Please contact us if you would like more information, or if you have any resources you would like us to add to the collection.

• HEPATITIS SA COMMUNITY NEWS • NOVEMBER 2014

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21 YEARS!

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

Street: Mail: Phone:

Fax: Web: Email:

Next year, Hepatitis SA (formerly the Hepatitis C Council of SA) will be celebrating its 21st anniversary. Please get in touch with us with yo ur memories of the organisa tion’s early years, or with any ideas of what you’d like to see us do to celebrate our first two de cades.

Email us at editor@hepa titissa.asn.au

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

Amita Gurung

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

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

Aboriginal Projects Coordinator Darrien Bromley

About the Cover: I ♥ MY LIVER rock candies, produced for World Hepatitis Day and given away at our various events.

CNP Peer Projects Officer Carol Holly Kylie MarkT Sue

Education Coordinator: Tess Opie Educators Claire Hose

13 11 14 (cost of a local call) www.lifeline.org.au Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers.

13 14 65

CNP Peer Projects Coordinator Michelle Spudic

CNP Peer Educators Bernadette Justin Andrea Margie MarkB1 MarkB2 Nikkas Patrick Penni

Lifeline National, 24-hour telephone counselling service.

Shannon Wright

Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au.

Editor: James Morrison Non-staff Contributor: Danella Smith

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. beyondblue

Contents

Mental health information line

1

Catching Up on Treatment

1300 224 636 www.beyondlbue.org.au

2

Hep B Action Plan

4

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

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

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

(08) 8293 3700 www.hivsa.org.au SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

(08) 8351 7626 SAVIVE SAVIVE has closed. Peer run CNPs are now run from Hepatitis SA. (08) 8362 8443.

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

(08) 8406 1600

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

World Hepatitis Day 2014

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

Vincentian Centre Men’s night shelter run by St Vincent dePaul Society.

6

Hepatitis in Parliament Strategic Plan Launched

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

1300 131 340

(08) 8245 8100

7

Liver Deaths Double

8

Mark’s Story

Community Access & Services SA Alcohol and drug education; clean needle program for the Vietnamese and other communities.

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

11

Homelessness Expo

(08) 8447 8821

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

12

LORA in Pt Lincoln

Peer Educator Mentor: Fred Robertson

15

What’s On

Peer Educators: Dean Karan Penni Will

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

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

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In Our Library

1800 650 890 www.headspace.org.au

South

Hepatitis B Coordinator Jenny Grant Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold Hepatitis SA Helpline Volunteers: Louise Debra Karan Information and Resources Coordinator: Cecilia Lim Publications Officer James Morrison

Librarian Joy Sims

Information and Resources Officer: Rose Magdalene IT Support Officer Bryan Soh-Lim Information and Resources Volunteers: Michelle Jo

Mark

BOARD Chair Arieta Papadelos

Vice Chair Bill Gaston

Secretary Lindsay Krassnitzer

Treasurer Howard Jillings

Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Nicci Parkin Jeff Stewart

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Catherine Ferguson Dr Judith Peppard

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.

Assistance hotline: 1300 729 202

Central & North

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.

18/11/2014 12:17:48 PM

#65 • November 2014

Community News

World Hepatitis Day 2014 LORA in Port Lincoln • Treatment Urgency

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FREE! Please take one

18/11/2014 12:17:45 PM