#58 HepSA Community News

#58 • January 2013

Community News

THE AUCKLAND STATEMENT Liver Cancer • PBS Problems Cover Pages - Issue 58 - Jan 2013.indd 1

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WIN!

Remember that from now on, the best contribution in the form of a letter or personal story printed in each issue of the Hepatitis SA Co mmunity News will receive a $25 shopping vouche r.

Write to us about anything to do with the magazine, the Council, living with hepatitis, or living well ideas.

Hepatitis SA provides information, education and support to the hepatitis C community and those at risk.

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@hepsa.asn.au

STAFF

Email the editor at editor@hepatitissa.asn.au

Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Info and Support Line Coordinator: Deborah Warneke-Arnold

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

Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette Education Coordinator: Tess Opie

About the Cover

Hepatitis B Coordinator Elaine Lloyd Educators: Nicole Taylor Michelle Spudic (Rural) Imogen Dayman

Auckland photo CC eGuide Travel (flickr.com/photos/ eguidetravel/292225913), globes photo CC Tup Wanders (flickr.com/ photos/tupwanders/79476476)

Peer Education Coordinator: Maggie McCabe

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

Peer Educator Mentor: Fred Robertson Peer Educators: James Karan Dean Megan Penni Will

Mark

Information and Resources Coordinator: Cecilia Lim Information and Resources Volunteers: Alyona Amanda Dayna Phil Philip Yvonne Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos Vice-Chairperson: Lisa Carter Secretary: Lindsay Krassnitzer Treasurer: Darrien Bromley

Contents 1

The Liver Cancer Burden

2

The Auckland Statement

4

PBS Problems

6

Dean’s Story

8 Clinical & Community Collaboration 10

CNP Report

12

C Health Inspirations

14

Calming the C

15

Why They Stay Away

Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Catherine Ferguson Bill Gaston Carol Holly 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.

Useful Contacts & Community Links Hepatitis SA

Provides information, education and support to people affected by hepatitis B and C and to health and community workers.

We offer free education sessions, printed information, telephone information and support, referrals and a clean needle program. Hepatitis SA also facilitates Calming the C, a support group for people affected by hepatitis C. Office Tel: (08) 8362 8443 Hepatitis SA Helpline: 1300 437 222 (cost of a local call anywhere in SA).

MOSAIC & P.E.A.C.E.

Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through these two services.

MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds.

MOSAIC (08) 8340 2022 P.E.A.C.E. (08) 8245 8100

Nunkuwarrin Yunti

An Aboriginal-controlled community health service with a clean needle program and liver clinic.

(08) 8406 1600

Clean Needle Programs

To find out about programs operating in SA, contact the Alcohol and Drug Information Service.

1300 131 340

SAVIVE

Provides peer-based support, information and education for people who use drugs, and is a Clean Needle Program outlet.

(08) 8334 1699

Hepatitis Helpline

This hotline, formerly operated by Drug & Alcohol Services South Australia, has now been handed over to Hepatitis SA: see the Hepatitis SA listing above.

SA Sex Industry Network (SA-SIN)

Promotes the health, rights and wellbeing of sex workers.

(08) 8334 1666

Community Access & Services SA

The Adelaide Dental Hospital

The hospital has a specially funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care.

Call us at Hepatitis SA for a referral on (08) 8362 8443.

Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities.

(08) 8351 9031

Aboriginal Health Council SA

Peak body representing Aboriginal communitycontrolled health services and substance misuse services in SA. AHCSA is the ‘health voice ’ for all Aboriginal people in SA, advocating for the community and supporting workers with appropriate Aboriginal health programs.

(08) 8273 7200

(Formerly Vietnamese Community in Australia (SA Chapter)) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program.

(08) 8447 8821

Are you interested in volunteering with Hepatitis SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepatitissa.asn.au and let us know.

We rely on volunteers for many of our vital services.

We welcome contributions from Hepatitis SA members and the general public.

A long, awkward pause

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The Liver Cancer Burden Hepatitis treatment central to Australia’s future health Cancer is a leading cause of morbidity and mortality in Australia, accounting for about 20% of the total disease burden and 30% of deaths. According to a new Australian Institute of Health and Welfare report, liver cancer—mostly due to chronic hepatitis B and C—is the fastest increasing cause of cancer mortality in Australia.

Indeed, hepatitis B is the most significant single cause of cancer worldwide, after tobacco.

Low hepatitis treatment rates need to be urgently addressed to stop this rapid rise in cancer deaths. The PBS listing of hepatitis C drugs Boceprevir and Telaprevir is vitally important to achieve this.

Epidemiologists Jennifer MacLachlan and Benjamin Cowie wrote to the Medical Journal of Australia to point out that liver cancer cases were expected to soon double to about 2500 a year if more was not done to tackle the underlying causes.

Dr Cowie attended the 8th Australasian Viral Hepatitis Conference in New Zealand in September, and was involved in launching the Auckland Statement (see page 2).

“A substantial scaling up of resources and efforts is needed to stop these epidemics in their tracks,” experts at the conference stated. “Otherwise liver cancer will continue to be among the fastest increasing

Dr Benjamin Cowie and the cancer report causes of cancer death in Australia and New Zealand.”

The conference organisers called for at least 80% of people with hepatitis B or C to be diagnosed, and for 5% of people with hepatitis C and 10% of those with hepatitis B to receive antiviral treatment every year.

This is important because it’s likely that a third of those living with hepatitis B and a quarter of those with hepatitis C are currently undiagnosed. Though they may not notice any symptoms of the viruses, without treatment their condition can progress to liver cancer or liver failure.

Only 2% of Australians who have hepatitis C and 3% with hepatitis B actually receive medical treatment for the condition. Dr Cowie said

part of the problem was long waiting lists.

“If you are living with hepatitis B and have undiagnosed cirrhosis, and then you wait for a year to be seen, you have a 2-3% chance of getting liver cancer. From a human rights perspective, I think that is unacceptable in rich societies like Australia and New Zealand.

“We need to be exploring not just sending people to hospital and waiting for liver clinics but getting these treatments into the community—and that means supporting general practitioners and nurses to take a greater role.”

The full report, Cancer survival and prevalence in Australia, can be downloaded at www. aihw.gov.au/publicationdetail/?id=10737422720.

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The Auckland Statement Let’s redefine the future of hepatitis In New Zealand on 10 September, the 8th Australasian Viral Hepatitis Conference issued ‘The Auckland Statement’: a call to stop new infections and to stop the rising death toll from viral hepatitis through the introduction of clear targets for governments.

• Over half a million people live with viral hepatitis in Australia and New Zealand.

• 50 new people are diagnosed every day, yet currently only a handful receive treatment.

• Deaths from hepatitis-related liver cancer are growing at the same pace as deaths from melanoma.

• If we don’t act now, liver cancer deaths could treble by 2030.

The Auckland Statement aims to focus attention on viral hepatitis as an urgent health concern that needs immediate action to prevent new infections and stop the rising death toll from cirrhosis and liver cancer.

These deaths are avoidable, and by taking up the opportunities provided by new

medical and scientific advances, scaling up services and approaches and working in genuine partnership with key affected communities we can build a response to viral hepatitis that is both effective and appropriate.

By taking such action now, it is possible to stop these epidemics in their tracks and stop liver cancer from continuing to be one of the fastest increasing causes of cancer death in Australia and New Zealand.

We have the capacity, knowledge and tools to tackle viral hepatitis head-on. We know what needs to be done. It is time for action and that is why we are calling on parliamentarians, responsible ministers, health departments, and others to act now by signing this statement and encouraging others to join us in this action, including you—your action could save many lives.

You can help us get there. By signing and endorsing the Auckland Statement, you’re helping us present a united front. Please read the statement on the next page, and visit www.aucklandstatement.com to sign up.

Photo CC Jay Springett (flickr.com/photos/thejaymo/6181334980)

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Slow Time Why medicines take so much time to get listed on the PBS At a time when there have been problems and delays in getting new hepatitis treatments listed on the Pharmaceutical Benefits Scheme, just what is going on when new medicines are considered for government subsidies? This article looks at the current laws, and at some of the other issues that delay PBS funding.

about the drug for evaluation, can then apply to have their drug subsidised by the government through inclusion in the Pharmaceutical Benefits Scheme (PBS). This makes the drug much more affordable for patients and so increases the market for it.

the health minister approved it for PBS listing. Only medicines that cost more than $10 million a year had to go to Cabinet for approval, and only two drugs (Viagra and nicotine patches) had ever been rejected by Cabinet after a positive PBAC recommendation.

The Australian government introduced a controversial delay to the approval process for subsidised medicines last year, in an attempt to cut costs. We decided to examine the timelines of the approval process in response because such delays reduce access to affordable medicines.

Our research found that while the government decision meant approvals took longer, there are also long delays caused by pharmaceutical companies.

These occur earlier in the approval process and could be having an even greater impact on access.

The drug approval process

The biggest delay is arguably at the stage where sponsors can exert the most control over timing.

For a new drug to be approved in Australia, it must first be assessed for safety by the Australian Drug Evaluation Committee (ADEC), which reviews drugs for listing by the Therapeutic Goods Administration (TGA).

Product sponsors (usually pharmaceutical companies), who provide information

To be on the PBS, a drug must be assessed by the Pharmaceutical Benefits Advisory Committee (PBAC) for effectiveness and cost effectiveness, and the government must agree to fund it.

Until early 2011, if PBAC recommended a medicine,

But in February 2011, the health minister announced that all PBAC recommendations would now need Cabinet review.

In addition, seven drugs were identified for indefinite deferral – despite PBAC and minister approval, they would not be subsidised.

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These decisions were criticised by pharmaceutical companies, consumer groups, medical professionals and a Senate committee for decreasing the affordability of medicines. Most of the drugs were approved after a seven-month delay, and the government agreed to a moratorium on the requirement for Cabinet review.

Timelines and delays The time between PBAC recommendation and listing on the PBS is only one part of the approval process.

We were interested in examining these delays in the context of the whole approval process, starting at the time of ADEC approval. We started by looking at all medicines approved by ADEC in 2004, to see how long it took for the sponsor to submit the drug to PBAC for review, and how long it took for the product to be

On average, there was a 17-month delay from ADEC approval of a drug to the first review by PBAC. In the two years after a drug was approved by ADEC, only 43% were submitted to PBAC and 32% had been approved. This is consistent with other research that has found that the time between ADEC and TGA approval and PBS listing has increased steadily from 13.6 months in 2000 to 34.2 months in 2009.

Although pharmaceutical companies were critical of the seven-month deferrals in 2011, we found a much longer delay occurring earlier in the review process – the time between TGA listing and PBAC submission. And this stage arguably is where sponsors can exert the most control over timing.

One of the reasons that companies may not apply for PBS listing is the cost of a submission. A major submission requires the collection of rigorous data on effectiveness and cost effectiveness, which requires significant time and resources.

Recent changes Although not in place during our study, since 2010 the PBS has also charged cost-recovery fees of up to $19,500 a submission.

The time and resources to prepare a PBAC submission may mean companies choose not to apply for PBS listing at all, and look for alternative ways of selling their products either directly to individuals, or by finding funding through special access schemes, private insurance companies, hospitals or charitable organisations.

Our research shows that while the 2011 policy changes did delay access to affordable new treatments, there are longer delays earlier in the approval process caused by product sponsors.

High submission costs, the availability of alternative sources of funding, and the need to negotiate a price with the pricing authority create disincentives for pharmaceutical companies to apply for PBS listing.

Pills image CC Robson# (flickr.com/photos/_robson_/7766696100) Clock image CC Andrea Joseph (flickr.com/photos/andreajoseph/346009214)

recommended by PBAC for listing on the PBS.

These issues will need to be addressed by future policy initiatives to ensure Australians have timely access to medicines made affordable by the PBS. Alison Pearce PhD Candidate, Centre for Health Economics Research and Evaluation at University of Technology, Sydney Originally published at The Conversation (theconversation.edu.au/ why-medicines-take-somuch-time-to-get-listedon-the-pbs-10902) and reprinted with permission.

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“One day I will beat this virus!”

Dean’s story My name is Dean Harris. I was born here in Adelaide 60 years ago; I spent most of my growing up years in Mitcham. It wasn’t until my late teens and early twenties that I started getting involved with drugs. I had an adventurous spirit, so I tried anything and everything that was going around at the time.

I presume it was around the early ‘70s when I got hep C. I didn’t really suffer any major effects at the time, not that I would have noticed as my health was bad anyway. Also they wouldn’t have been able to tell back then what it was, as a hepatitis C test didn’t appear until 1990.

I went undiagnosed until 2002 when I went to see a GP for another matter. The GP did tests and informed me that I had hepatitis C. By then I was living in Darwin. I had moved there to do bush work and mineral exploration. In Darwin at the time, the knowledge of hepatitis C among GPs was minimal. The GP advised me to go home, stop drinking for three months, do a livercleansing diet, and then come back to see if my liver was back into a healthy state.

After doing that and dropping six kilos in three months, I went back to see him and was told that I was cured—a total misdiagnosis. But I was relying on my GP to tell me the facts about hepatitis C, so I went on with my life.

In 2008 I went to see another GP due to feeling tired all the time and a lack of libido. This GP was more switched on and did the test which showed hepatitis C. I later had a PCR test to determine the genotype of the virus. I was told to go to a liver clinic to try treatment, which was expected to start in December 2008, after I’d had six months of no drinking. During that time I had to cease work and apply for a disability pension. I eventually got to see a specialist at the liver clinic and was told that I was ineligible for treatment since the chances of treatment working were less than 3%.

The advice I got was to go home and have a healthy diet.

I couldn’t even get out of a lounge chair due to cramps in my legs. I took magnesium tablets to try

By then I had encephal­ opathy due to the ammonia build-up in my brain, and was put on medication for that. I started to gain weight due to water retention. In 2009 I continued to attend the liver clinic but nothing seemed to be happening. I got a new GP and he asked, “What are they doing with you?” “I don’t know,” I said. After being rejected for treatment I was left in the dark. The clinic forgot about me. It turns out they were waiting for my liver to deteriorate enough to get a transplant.

I continued to suffer encephalopathic incidents. I could no longer live alone,

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and ease them. Once, while driving, I got lost in a suburb I knew well. I realized that I was a danger to others and

myself, so I ceased driving.

Encephalopathic incidents increased and I had to spend two weeks in hospital. I was out for two weeks and then back in hospital again for the remainder of February 2011.

Then a visiting liver specialist from Flinders said that I needed a transplant soon; my skin and eyes were yellow and I was very lethargic.

The specialist arranged to transfer me to Flinders in March 2011. It was around that time when I suffered a major encephalopathic incident and an ambulance had to be called, I had to be dosed up on drugs and be put on a monitor. My weight had gone up again. I had to have several operations for oesophageal varices, which was a result of the liver not functioning properly. In fact I had spider veins all over my body. It was very itchy.

When I was transferred to Flinders and assessed for a transplant, they found that at 84kg, I was too overweight to have the transplant. It was due to the fluid retention I was accumulating. My legs were swollen, my skin was stretched to its limit. At some point I had kidney failure but I survived that. They put in a tap to drain the fluid out of my body. With the first tap, I had 14 litres of fluid come out, which took 10kg off my weight. The second tap drained 10 more litres.

My weight dropped by about 20kg.

By that time my health got a lot worse. My liver was at the end of its life. I couldn’t remember things well. I had the transplant on 26 June 2011, at 7am. I had the usual side effects after the transplant, including hallucinations and changing eyesight, but I started feeling a bit better.

However, after the transplant my skin was still bright yellow, and I had a high viral load of hepatitis C and the virus started attacking the new liver. I had a PCR test and was told that I should go on treatment. I started treatment in January 2012.

During treatment I had depression and became very emotional. My white blood cell and platelet counts were both low.

I had to cease treatment recently after nine months because it was not working.

I am still on a maintenance dose of interferon, and minimal ribavirin. During my stay in hospital I have picked up MRSA [Editor’s note: a group of bacteria resistant to antibiotics]. This needs to be treated eventually as it is causing me pain, but it would mean decreasing the anti-rejection drugs for my liver to dangerously low levels.

My plans for the future had to be changed. I had plans to return to Darwin to my daughters, but now this is (continued on page 11) Hepatitis SA Community News January 2013 • 7

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Clinical & Community Collaboration HCV treatment and care in a Drug & Alcohol Services SA (DASSA) site The Outreach Hepatitis C Peer Education and Support project that Hepatitis SA runs is based on a model that was successfully engaging clients at the Warinilla Inpatients clinic, which works with detox clients, since 2006. The fundamental idea is that we need to go to where clients are, rather than expect them to come to us.

The Peer Education team has been funded for the equivalent of three full-time positions by the South Australian Department for Health and Ageing since 2008; this pays the wages of a project coordinator and a number of casual peer educators.

Peer educators have a lived experience of hepatitis C, and some of them have undergone hepatitis C treatment. All have attained nationally accredited training.

The project places hepatitis C peer educators at various host agencies which are commonly used by the hepatitis C priority populations. More than 35 sites have hosted peer educators since the project started. Peer education sessions can be anything from weekly to quarterly, and they are delivered to groups or to individuals with informal conversations about hepatitis C. The peer educators have developed a range of client engagement strategies, including ‘Ask me about hepatitis C’ T-shirts, a series of starter questions, arts-based approaches for groups, and our sought-after hepatitis C knowledge book and game called Fact or Crap?.

We do a lot of work at Warinilla, which is an Eastern

Drug & Alcohol Services South Australia (DASSA) site set in the leafy Adelaide suburb of Norwood. The main services here are: Inpatients, Outpatients, Pharmacy, and the Warinilla HCV Treatment Clinic. Peer educators see clients at all these services.

A key priority of the SA Hepatitis C Action Plan is to improve access to hepatitis C treatment. A collaborative treatment and care approach was undertaken by the Hepatology Unit from Flinders Medical Centre, clinical staff at DASSA, and Hepatitis SA’s peer educators.

The treatment clinic was started in October 2009 by Flinders Medical Centre and DASSA staff. A peer educator from Hepatitis SA started seeing the clients accessing treatment there in March 2010.

A pre-treatment clinic, staffed by a DASSA doctor, operates fortnightly. This alternates with a nurse-coordinated hepatitis C treatment clinic held on the other weeks. A consultant from Flinders Medical Centre attends the clinic every fourth week, while the peer educator attends all clinics.

“After all those chats with you, Fred, I’ve finally bit the bullet and I’m going to tackle the treatment. I’m seeing the doctor this morning to organise it.”

—Warinilla Client

In the first 18 months at Warinilla, peer educators have seen total of 298 clients. 190 (or 64%) disclosed that they were HCV-positive. There were more than twice as many male as female clients, while only very small numbers of clients identified themselves as being from CALD or Aboriginal backgrounds. In this time the peer educators referred 42 DASSA clients to the pretreatment clinic.

For peer educators, the Warinilla clinic is a very challenging environment in which to engage clients about hepatitis C and its treatment.

The first of the main challenges is the fact that hepatitis C is well down on the list of priorities for the client, and is often left on the backburner.

Another is that a large number of clients have serious concerns about tackling treatment: for some it’s the fear of side effects, particularly depression. For others, those with a history of injecting, it’s the fear that side effects may mimic withdrawal symptoms, and that might precipitate a relapse into the use of drugs. There is also a great deal of misinformation about hepatitis C and its treatment circulating amongst this client group.

Furthermore, people with no symptoms understandably find it hard to face the idea of undergoing a treatment with sometimes gruelling side effects, given that they don’t yet feel sick from the hepatitis virus.

In the past, when eligibility criteria for hepatitis C treatment specified a certain degree of liver fibrosis, some specialists

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Warinilla

“I’m about halfway through the treatment now. I’m not finding it too bad apart, from feeling tired all the time. Did it get you like that?”

—Warinilla Client told patients that they didn’t need treatment at that time.

These people have continued to hold on to the belief that they don’t need treatment now.

Another major point is that, in the past, people who were currently injecting were also excluded from treatment, and some believe that this is still the case.

Overall, many people had very poor knowledge of hepatitis C, its natural history, and the potential consequences of developing advanced liver disease. Peer educators share the facts of the treatment journey with these clients. But often it takes a lot of time to

build trust with clients before they more seriously consider tackling treatment, and they have many anxieties.

Importantly, to help with this, the peer educator is there throughout the treatment journey, answering any questions and offering advice.

With 18 months of experience, we can now consider what has worked well.

The usual peer educator at Warinilla has been on treatment twice, and is able to share his experiences and management tips from the patient perspective with DASSA clients before, during and after the treatment journey.

Giving clients the time they need to have all their questions answered is essential, and as the peer educator is regularly on site there are many opportunities to build upon and consolidate the previous information and support provided.

“I’m here for my 6-month post-treatment PCR result...I am a bit nervous about getting the result!” And then, a little later: “Good news—the virus is undetectable!”

—Warinilla Client DASSA clients often report barriers accessing care and treatment though hospitals, so it is extremely useful having us go to them. And it’s not all about treatment, but rather it is about entering care and putting a focus on hepatitis C, regardless of a client’s treatment readiness.

The collaboration between clinical and community services and the respect for each others’ expertise has been a key component of the success of this model, and we are continuing this very effective program into the future.

Fred Robertson Hepatitis SA Community News January 2013 • 9

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CNP to continue at Hepatitis SA One-year trial a success

Why have a CNP at Hepatitis SA? The aim of the program is to: • contribute to preventing blood-borne virus transmission by: • increasing the availability of, and access to, sterile injecting equipment,

• reducing the incidence of unsafe injecting practices, and • reducing the incidence of inappropriate needle and syringe disposal, and • provide an opportunity for people who inject drugs to access information about hepatitis C and referral to treatment, health maintenance and support services.

In addition to providing a high-quality service for people who inject, we believe that the CNP service has a number of important benefits for Hepatitis SA. As well as being a visible commitment of our support for harm reduction in relation to the transmission of hepatitis C, it also provides us with the opportunity to connect more with people who inject. This allows us to learn more about their needs, provide referrals, and engage with them about safe injecting practices.

Photo CC Todd Huffman (flickr.com/photos/oddwick/2344377068)

In September 2011, Hepatitis SA began providing a Clean Needle Program (CNP) as a one-year trial. The trial has now come to an end and the Board has approved the CNP continuing as a permanent part of our services.

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So, how did the trial go?

During the trial, which ran for 12 months from 1 September, 2011, there were 139 visits to the CNP. More men than women visited the service, and the age range of clients was 20-57 years, with the largest number of visits made by those aged 35-44 years.

Visitors to the CNP reported that they were collecting equipment for a total of 419 people, making the reach of the service far broader than the clients attending the service in person. The average number of people an individual client collected

Dean’s Story not possible. They come to see me here as often as they can. Sometimes I will see them in Darwin, but every trip is draining. However, life is very hectic right now: I go to TAFE, work at Hepatitis SA, and volunteer at Flinders Medical Centre. There is no time to ponder. I try to keep as positive as I can. I consider coming to Hepatitis SA to be a great support, and also an avenue for me to give back to the community.

I am very passionate about it. I now have a new GP, whom I’m happy with. I feel comfortable discussing the illness with him and also

for was 2.95, and the largest number was 20.

During the trial we distributed 11,546 syringes and accepted 43,630 returns.

Opiates were by far the most commonly reported drug to be injected, being recorded 122 times. This was followed by other drugs (10), amphetamines (8), steroids (4) and cocaine (1) (note that some visitors reported more than one drug to be injected per visit).

More equipment in 2013 ?

From mid-January 2013, more equipment will be

available from our site on a cost-recovery basis. This will include wheel filters ($1 each), Sterifilts (40c each), water (40c each or 3 for $1) and spoons (free).

This is in addition to the 1mL (available in 3-packs, 10-packs and boxes of 100) and 3-30mL barrels, a range of tips, butterflies, swabs and disposal containers, which are provided at no cost.

The CNP is open 9am to 5pm, Monday to Friday, and is accessible from the front door of our premises at 3 Hackney Rd, Hackney.

Rose Magdalene

(continued from page 7) educating him about the virus. My home life is also settled; I share a house with a housemate and two cats.

I had to re-evaluate everything in my life due to this illness. I am now content with my situation. I understand that people are working extremely hard to get me healthy. I believe there were no shades of grey about me having the transplant: if you need it, you need it. Same with the treatment, if you need treatment then you should have it. The earlier you find out you have the virus the easier it is to treat it.

I had the virus for 40 years.

Right now I feel relieved, because I understand why I had certain instances in life which I could not explain before. I also sometimes have mood swings, but now I can explain to the people around me why, so they are aware.

I believe one day I will beat this virus. For now I stay positive and help others stay positive, like in the saying, “If you see someone without a smile, give them one of yours.”

Dean Harris, as told to Alyona Haines

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C Health Inspirations Successful project returns in 2013 The C Health Inspirations (CHI) course is a series of workshops for people living with hepatitis C, enabling them to take ownership over their health and achieve their desired health outcomes.

and learning techniques to bring positive changes into people’s everyday lives. In addition to this, the CHI course can assist participants to physically and mentally prepare for treatment.

The program will run in the northern suburbs of Adelaide, due to the high prevalence of hepatitis C there, allowing Hepatitis SA to expand their outreach to provide services for people with hepatitis C in this area.

The way in which thoughts and emotions, diet, physical activity and the management of substance use can be used in symptom management for people living with hepatitis C will be discussed each week, giving participants an opportunity to gain some practical tips from guest speakers and each other.

Participants will have the opportunity to develop practical skills over 6 weeks through a 3-hour weekly workshop covering a series of activities and presentations from guest speakers on topics such as goal-setting, thoughts and emotions, diet, physical activity, understanding addiction and treatment.

The aim of each workshop is to provide a fun, interactive and safe forum for discussion, sharing of challenges, tips and ideas,

Introduction and Goal Setting Goal setting is a useful skill to have in all areas of life.

Through weekly goal setting activities, participants will develop their ability to recognise a goal and set steps to achieve it in a realistic and timely way, ultimately assisting people to be able to make the desired changes in their own life.

Program Outline & Dates Week Date Theme 1

14 March 2013 Introduction & Goal-Setting

2

21 March 2013 Thoughts & Emotions

3

28 March 2013 Diet

4

4 April 2013

Physical Activity

5

11 April 2013

Understanding Addiction

6

18 April 2013

Considering Treatment

Thoughts and Emotions Depression and anxiety are commonly experienced by people living with chronic conditions. Consequently, it is important that people understand the pressures that living with hepatitis C can place on one’s mental health.

This course will provide people with tips on how people with hepatitis C can manage this pressure, coping when experiencing stigma and discrimination, and what motivates people to stay resilient during challenging times. This week aims to address these areas early on in the course to enable people to be in a positive mind frame to continue the journey towards a healthier life.

Diet People with hepatitis C do not need to eat a diet different to that of a healthy, balanced diet; however, achieving this balance can be difficult for anyone for many varied reasons. For a person living with hepatitis C, an unhealthy diet can place added pressure on the liver which has sustained injury as a result of the virus.

The aim of this workshop is for participants to be able to recognise what constitutes a healthy and balanced diet, the challenges that they face in eating this balanced diet, and how they can overcome these challenges. A practical cooking activity and problem solving tasks will help

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participants to develop the skills to be able to fuel their bodies in the best way for a healthy life and liver.

Physical Activity The benefits of physical activity for people with hepatitis C are much the same as for all Australians.

Exercise has healthprotective functions such as maintenance of a healthy body weight servicing to

stem development of chronic illness, positive impacts on mood, and increased strength and energy. For people with hepatitis C, physical activity can help to manage and reduce fatty liver which can speed up liver damage, and can help to manage sleep issues associated with the virus through ensuring that the body is ‘ready for bed’. Furthermore, exercise can help people to feel

better while going through treatment and reduces the chance of development of common co-morbidities for people with hepatitis C including diabetes and heart disease. The workshops will allow participants to try different types of exercise (walking, a low-intensity exercise class and a yoga class) so that they may find the type of activity that suits them. (continued on page 16)

Audio and Video Giveaways The Hepatitis SA Library has the following resources to give away. First come first served.

• “Are you living with an angry liver?” – by Roche, (3 copies, 2 with no cover), VCR • “Blood Relations” – injecting drug use and Hep C in Indigenous communities – by Australian Injecting & Illicit drug users league, VCR • “Dealing with depression and anxiety – a patient video” (no cover) VCR • “Depression & Cancer” – by Adrenalin Strategics, 2001, CD • “Disease and its treatment” – Chronic non A, non B hepatitis (hepatitis C) – by Roche Products, VCR • “Everybody’s business” – A resource in HIV, AIDS and Hepatitis C for multicultural Australia, by Multicultural HIV/AIDS services. Available in the following languages: Arabic (1999), Bosnian (1999) VCR + booklet in a pack, Chinese (1999) VCR + booklet in a pack, English (1999) VCR + booklet (2 copies), English (2003) CD and VCR in a pack, Spanish (1999) VCR + booklet in a pack, Tetum [east Timorese] (1999) VCR, Vietnamese (1999) VCR + booklet in a pack • “Get ready for Redipen” – Pegatron video, by Schering, 2004, VCR • “Hepatitis B – the hidden penalty” – by Smithkline Beecham Biologicals, VCR • “Hepatitis C treatment andMmanagement” – by Commonwealth of Australia, 1999, (no cover, 2 copies), VCR • “Hepatitis C: an update on testing and management” – by ASHM, Rural Health Ed Foundation, 2001, VCR • “Let’s talk about hepatitis” - Khmer audio program suitable for broadcast or use in workshops. By PEACE Multicultural Services, Relationships Australia. 2006 (two copies) • “Look back Look forward” – coming to terms with hepatitis C, by Kathy Sport (two copies), 1998 VCR • “Managing Depression – the emerging facts” –by Adrenalin Strategics, 2001 CD • “Roferon – A, self injecting programme” 10min (no cover), VCR • “Shattered Illusions” –safe sex and injecting drug use video for people with gender issues, by The Gender Center, 1995, VCR • “Staying Safe in Prisons” – by GMV Productions, SA, (4 copies), VCR • “The Big Combo” – by Hep C Council NSW (2 copies), 2002, DVD • “The Big Combo” – by Hepatitis C Council NSW, (no cover,5 copies), VCR • “Traces of Blood” – a story about hepatitis C, by SAVIVE (3 copies), 1997, VCR • “Your guide to Pegasus self-injection” – Roche, 2003, (4 copies) VCR • “Youth Suicide – Recognising the signs” – by VIZ-AD (SA), promoted by Child Health Foundation. VCR If you are interested, please contact email cecilia@hepatitissa.asn.au or admin@hepatitissa.asn.au, or Hepatitis SA Community News phone 8362 8443.

January 2013 • 13

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Calming the C • Information and support in a confidential, friendly environment • Speak to others who have had treatment • Partners, family and friends welcome Meet us fortnightly on Tuesdays, 12.30pm-2.30pm at Hepatitis SA, 3 Hackney Rd, Hackney To get more information, phone 8362 8443 or 1300 437 222.

The dates for the first six months of 2013 are: Tuesday, 8 January Tuesday, 22 January

Tuesday, 5 March Tuesday, 19 March

Tuesday, 14 May Tuesday, 28 May

Tuesday, 5 February Tuesday, 19 February

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

Tuesday, 11 June Tuesday, 25 June

Friday, 25 January Friday, 22 February Friday, 22 March Friday, 26 April Friday, 24 May Friday, 28 June

Hepatitis SA Community News 14 • January 2013 Internal Pages - Issue 58 - Jan 2013.indd 14

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Image CC Ruben Schade (flickr.com/photos/rubenerd/3588863788)

Why They Stay Away Findings from the Northern Needs Assessment One third of the 34 respondents in a Hepatitis SA needs assessment survey in Adelaide’s northern suburbs said they stayed away from hepatitis C services because they had experienced discrimination by healthcare providers in the past.

Almost 60% of those responding to the early 2012 survey felt there weren’t enough trained “hep C-friendly” health professionals in their area, and 72% felt that there wasn’t enough psychological and emotional support for them in the north.

In contrast, an overwhelming 85% of respondents felt they had enough access to upto-date information about hepatitis C. Trust all-important Participants in a small focus group for the same study agreed that finding an appropriate, understanding GP was the important first step in their hepatitis C journeys. They identified a trusting relationship with a skilled service provider as the

highest priority in accessing services, with one participant describing the experience of getting a skilled and trusted health professional as a “lucky dip”.

When asked how they would describe the ideal medical service, focus group participants said that GPs should feel comfortable discussing the virus and issues of transmission, symptoms, testing and treatment. The initial appointment should be at least 20 minutes long, GPs must know and understand patient history and be willing to learn about hepatitis C even if initially unfamiliar with the disease.

Transport costs and travel time

cost of the service itself— such as transport and parking—was not a major barrier to people seeking hepatitis C services: 44% of respondents indicated strongly that it was not a problem. However, half of the respondents identified travel time and distance as a reason for not accessing hepatitis C-related services.

Some of the suggestions for services from Hepatitis SA which would be of interest to survey participants from the northern suburbs included healthy living and healthy liver cooking classes, basic hepatitis C education sessions and community garden groups.

Alyona Haines

Contrary to expectations, cost incurred in addition to

Tell us your Boceprevir or Telaprevir experiences!

Have you had treatment with boceprevir or telaprevir? How was the experience for you?

Did you feel you were well prepared for the dosing regimen and any side effects, and how did you cope with it all?

Knowing about side effects you have experiences and how to deal with them, if and when they occur, could be really helpful for other people considering, or about to start, treatment with these new drugs.

Hepatitis SA is developing an information Internal Pages - Issue 58 - Jan 2013.indd 15

pamphlet about the side effects of boceprevir and telaprevir, including strategies you have found useful for dealing with them.

If you have information, tips or stories to share, call Cecilia on 8362 8443 (regional callers 1300 437 222) or email cecilia@ hepatitissa.asn.au.

You will remain anonymous unless you Hepatitis SA Community News choose not to.

January 2013 • 15 21/12/2012 3:15:21 PM

Become a

(continued from page 12)

member

Understanding Addiction Our liver acts as a filter for toxic substances. Use of substances such as alcohol and other drugs have the potential to put added stress on your liver, in addition to the stress already caused Hepatitis Inc. isCaware by theSA hepatitis virus. of the need Consumption for privacy and endeavours of alcohol can place people with hepatitis to comply at all times with the C atAct an increased of any Privacy 2001. Asrisk such, developing liver disease, information provided by you including cirrhosis. Smoking is accessed only by authorised has also been found to personnel and remain strictly increase thewill progression confidential.

To change of liver disease, as wellorasaccess exacerbating gum conditions any personal information we hold and dry mouth associated about you, please write to the with at hepatitis C. Participants Manager the address opposite. will gain practical tips for managing/reducing substance use for health and will come away from this workshop with anincludes understanding of Membership a subscription the effects that substances to the quarterly Hepatitis SA can have on your liver, Community News. and increased knowledge regarding the theory behind addiction. s

Hepatitis SA provides information, education and support to the hepatitis C community and those at risk. A strong membership of people affected by the virus is essential to our work.

Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071 or fax: (08) 8362 8559.

Your details  New

Member type (tick one) Title

 Renewing

Name

Occupation Organisation (if applicable) Mailing address Postcode Phone Fax Email Signature

Date

Membership typeof the need for privacy and endeavours Hepatitis SA Inc. is aware toIndividual comply at allMembership times with the Privacy Act 2001. FREE! As such, any information provided by you is accessed only by authorised Organisational Membership $55 personnel and will remain strictly confidential. To change or access any personal information we hold about you, please write to the Manager at the address above.

Individual Membership will continue from year to year without the need for renewal, as long as

 

Hepatitis

contact details provided remain current. You are able to resign your membership at any time. To update contact details for continuing membership or to resign your membership, please phone HCCSA Administration on 8362 8443.

Yes, I would like to receive the Community News and information updates via:  email  post

Or,  please don’t send me anything.

contact details for renewal, as long as to year without the need details for will continue from year time. To update contact Individual Membership your membership at any n on 8362 8443.

You are able to resign please phone HCCSA Administratio provided remain current. or to resign your membership, continuing membership

 Yes

If yes, how much?*

$

 No

*GST does not apply. Donations over $2 are tax deductible. ted SA Health has contribu . funds towards this program

OFFICE USE ONLY  TIS  PEER ED

June 201 Cover Pages - Issue 52 -

#52

Treatment

Difficulty in accessing treatment, variable success rates, symptoms, duration and concerns about one’s ability to work are all factors Hepatitis Community News Take taken into account #51by • Aprilthose 2011 Control considering treatment for of hepatitis C. This week aims Jack’s to clarify the in’s and out’s Life! of the treatment process to TREATMENT OPTIONS nt Journey • The Treatme yed Dela ions icat Med New allow participants to consider all of the factors affecting their decision to commence the process.

C

Donations Would you like to make a donation?

C

New Community • June 2011

The story of Jack’s experienc es discovering he had hepatitis C and learning more about the virus have run in the Hepatitis C Community News since late 2008. Now we’re handing over control of the story to YOU.

1

7/06/2011 9:45:04 AM

Email or write to us with suggestions of what you’d like to see happen next. Should Jack go on treatment? Take up martial arts? Become a masked avenger? Let us know!

If your suggestion is used, you will win a $100 shopping voucher.

 MEMBERSHIP ENTERED #  LIBRARY MEMBERSHIP ENTERED #  MEMBER PACK SENT  LIBRARY CARD SENT  MEMBER PACK ORDER ENTERED #

Send your ideas, with your contact details, to james@hepccouncilsa.asn.a u, or to The Editor at PO Box 782, Kent Town, SA 5071.

ABN: 38 030 552 547

If two or more people send in the same great idea, the first to have done so will be the winner—s o act fast!

Hepatitis C Community

SA Health has contribu

ted funds towards this

program.

News March 2011 • 15

Contact education@ Hepatitis in SA • Blood-Borne Virus Edu hepatitissa.asn.au for• more cation Multicultural Liver Clin ic • information.

Tax invoice – please retain a copy for your records.

Hepatitis SA Community News 16 • January 2013 Internal Pages - Issue 58 - Jan 2013.indd 16

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WIN!

Remember that from now on, the best contribution in the form of a letter or personal story printed in each issue of the Hepatitis SA Co mmunity News will receive a $25 shopping vouche r.

Write to us about anything to do with the magazine, the Council, living with hepatitis, or living well ideas.

Hepatitis SA provides information, education and support to the hepatitis C community and those at risk.

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@hepsa.asn.au

STAFF

Email the editor at editor@hepatitissa.asn.au

Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Info and Support Line Coordinator: Deborah Warneke-Arnold

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

Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette Education Coordinator: Tess Opie

About the Cover

Hepatitis B Coordinator Elaine Lloyd Educators: Nicole Taylor Michelle Spudic (Rural) Imogen Dayman

Auckland photo CC eGuide Travel (flickr.com/photos/ eguidetravel/292225913), globes photo CC Tup Wanders (flickr.com/ photos/tupwanders/79476476)

Peer Education Coordinator: Maggie McCabe

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

Peer Educator Mentor: Fred Robertson Peer Educators: James Karan Dean Megan Penni Will

Mark

Information and Resources Coordinator: Cecilia Lim Information and Resources Volunteers: Alyona Amanda Dayna Phil Philip Yvonne Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos Vice-Chairperson: Lisa Carter Secretary: Lindsay Krassnitzer Treasurer: Darrien Bromley

Contents 1

The Liver Cancer Burden

2

The Auckland Statement

4

PBS Problems

6

Dean’s Story

8 Clinical & Community Collaboration 10

CNP Report

12

C Health Inspirations

14

Calming the C

15

Why They Stay Away

Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Catherine Ferguson Bill Gaston Carol Holly 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.

Useful Contacts & Community Links Hepatitis SA

Provides information, education and support to people affected by hepatitis B and C and to health and community workers.

We offer free education sessions, printed information, telephone information and support, referrals and a clean needle program. Hepatitis SA also facilitates Calming the C, a support group for people affected by hepatitis C. Office Tel: (08) 8362 8443 Hepatitis SA Helpline: 1300 437 222 (cost of a local call anywhere in SA).

MOSAIC & P.E.A.C.E.

Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through these two services.

MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds.

MOSAIC (08) 8340 2022 P.E.A.C.E. (08) 8245 8100

Nunkuwarrin Yunti

An Aboriginal-controlled community health service with a clean needle program and liver clinic.

(08) 8406 1600

Clean Needle Programs

To find out about programs operating in SA, contact the Alcohol and Drug Information Service.

1300 131 340

SAVIVE

Provides peer-based support, information and education for people who use drugs, and is a Clean Needle Program outlet.

(08) 8334 1699

Hepatitis Helpline

This hotline, formerly operated by Drug & Alcohol Services South Australia, has now been handed over to Hepatitis SA: see the Hepatitis SA listing above.

SA Sex Industry Network (SA-SIN)

Promotes the health, rights and wellbeing of sex workers.

(08) 8334 1666

Community Access & Services SA

The Adelaide Dental Hospital

The hospital has a specially funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care.

Call us at Hepatitis SA for a referral on (08) 8362 8443.

Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities.

(08) 8351 9031

Aboriginal Health Council SA

Peak body representing Aboriginal communitycontrolled health services and substance misuse services in SA. AHCSA is the ‘health voice ’ for all Aboriginal people in SA, advocating for the community and supporting workers with appropriate Aboriginal health programs.

(08) 8273 7200

(Formerly Vietnamese Community in Australia (SA Chapter)) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program.

(08) 8447 8821

Are you interested in volunteering with Hepatitis SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepatitissa.asn.au and let us know.

We rely on volunteers for many of our vital services.

We welcome contributions from Hepatitis SA members and the general public.

A long, awkward pause

Cover Pages - Issue 58 - Jan 2013.indd 2

4/01/2013 10:59:35 AM

#58 • January 2013

Community News

THE AUCKLAND STATEMENT Liver Cancer • PBS Problems Cover Pages - Issue 58 - Jan 2013.indd 1

4/01/2013 10:59:33 AM