#64 HepSA Community News

Community News

#64 • August 2014

World Hepatitis Day 2014 SA’s Hep B Action Plan • National Hepatitis Strategies CNPs at Hepatitis SA • Sofosbuvir Approved by TGA

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FREE! Please take one

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

Street: Mail: Phone:

Fax: Web: Email:

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

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter

20 YEARS!

In September, Hepatitis SA (formerly the Hepatiti s C Council of SA) will be celebrating its 20th 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

Hepatitis SA Helpline Volunteers: Louise Debra Karan

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

Education Coordinator (Acting): Shannon Wright Educators: Claire Hose Damian Creaser

Editor: James Morrison Non-staff Contributor: Danella Smith

Hepatitis B Coordinator Jenny Grant Information and Resources Coordinator: Cecilia Lim Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims Information and Resources Volunteers: Ram Sandy Jo

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

Contents 1

National Hepatitis Strategies

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Urgent Action on Hep B

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WHO for WHD

5 Prevention 6

SA’s Hep B Action Plan

Peer Educator Mentor: Fred Robertson

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The Hepatitis Report Card

Peer Educators: Dean Karan Mark Penni Will

10 CNPs

CNP Peer Projects Coordinator: Michelle Spudic CNP Peer Projects Officer: Carol Holly Margie Sue

Mark

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Cake Nation

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Viral Hepatitis Nurses

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What’s On

14 Sofosbuvir

BOARD

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New Resources

Chairperson: Arieta Papadelos

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In our Library

Vice Chairperson Bill Gaston

Treasurer: Howard Jillings Senior Staff Representative: Kerry Paterson

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Hepatitis SA Helpline 1300 437 222 (cost of a local call)

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

Call Hepatitis SA on 1300 437 222 for a referral.

AIDS Council SA ACSA has closed down.

See p3 of issue 61 for details and replacement service contact details. beyondblue Mental health information line 1300 224 636 www.beyondlbue.org.au Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service.

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

(08) 8447 8821

Secretary: Lindsay Krassnitzer

Ordinary Members: Gillian Bridgen Nicci Parkin Jeff Stewart

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au

Amita Gurung

Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold

CNP Peer Educators: Kylie Justin Patrick Penni

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

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.

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

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

1800 650 890 www.headspace.org.au

(08) 8245 8100

Lifeline National, 24-hour telephone counselling service.

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

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

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

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

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

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

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

(08) 8406 1600

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

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

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

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

Central & North:

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

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

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

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News

Strategic Approach National Hepatitis B and C Strategies must be ‘catalyst for investment’

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alf a million Australians are set to benefit from new National Strategies on viral hepatitis launched by the Federal Health Minister in July, but only if investment is made available to turn aspirational targets into a reality for people living with, or at risk of, viral hepatitis.

Hepatitis Australia worked with the Government to develop the National Strategies and welcomed their launch just ahead of World Hepatitis Day on 28 July.

Hepatitis Australia’s President, Terry Higgins said, “We welcome the commitment of the Federal, State and Territory Governments in launching the National Strategies, which should herald a brighter future for Australians at risk of, or living with, viral hepatitis.

“However, the real work starts today. Immediate investment and action in prevention and treatment programs is now urgently needed to address rising rates of new infections and appallingly low levels of treatment,” he said.

Despite half a million Australians living with viral

hepatitis, very few receive treatment each year—less than 5% receive treatment for hepatitis B and 1% for hepatitis C. Almost 1,000 Australians die from hepatitis-related liver cancer each year (see the Hepatitis Report Card article on p8).

The Hepatitis B Strategy calls for a three-fold increase in treatment and an increase in diagnosis so that at least 80% of all people living with chronic hepatitis B are diagnosed. The Hepatitis C Strategy calls for a 50% increase in treatment rates each year, and for a 50% overall reduction in transmission.

“Across the board, these strategies call for a rapid upscaling of testing and treatment. We need to harness latest scientific advances, address drug pricing and eliminate the stigma and discrimination that might hinder progress,” said Australasian Society for HIV Medicine (ASHM) CEO Levinia Crooks.

“In particular we need to invest heavily in our health workforce, so that they have

the capacity and knowledge required to deliver quality care.”

“Without urgent investment in rigorous treatment programs, Australia will continue to fail in its efforts to halt escalating rates of serious liver disease due to chronic hepatitis B or C,” Hepatitis Australia’s Acting CEO, Kevin Marriott said.

Despite having National Strategies for viral hepatitis in place for some years, the number of people affected by hepatitis B and hepatitis C has continued to grow year on year, highlighting the need for more investment in prevention.

“Australia needs to redouble its efforts and investment in prevention. We know what works—educating the community on the risks of infection and improving access to hepatitis B vaccinations and needle and syringe programs for vulnerable populations. It’s now time for the investment to make it happen,” Mr Marriott concluded.

The strategies can be downloaded from http:// tinyurl.com/natstrats2014.

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News World Hepatitis Day 2014

Act Urgently on Hepatitis B, and We Can Save Lives

Chris Enright & Associate Professor Benjamin Cowie on the importance of hep B intervention

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iver cancer incidence rates are set to triple by 2020, yet the potential to save many lives and reduce the impact cancer has on families is enormous.

The condition is responsible for the second most cancer deaths worldwide each year, yet the leading cause of liver cancer — chronic hepatitis B infection — is a vaccine-preventable, treatable infection.

The asymptomatic nature of chronic liver disease means that once patients develop symptoms, it is often too late to intervene. They may have advanced liver disease or liver cancer, and less than a year to live. Five-year survival for liver cancer is still less than 20%, so for many people, a diagnosis of liver cancer leads to death within a year.

The fact that people are dying from chronic hepatitis B-related liver cancer at all, let alone

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on such a rapidly increasing trajectory, is a very loud wakeup call.

In a country where vaccination and treatment for this infection is available, this is very alarming and requires immediate action. No one should die of a disease that can be so easily prevented.

Australia’s response to HIV/ AIDS will be in focus this month when the International AIDS Conference comes to Melbourne. Characterised by ongoing appropriate funding, a primary care focus for medical care, and partnership with, and leadership of, affected communities, our approach to HIV/AIDS is recognised as being an example of developing healthy public policy for a chronic communicable disease.

It is estimated that 10 times the number of Australians die from viral hepatitis when compared with HIV/ AIDS each year.

Chronic hepatitis B disproportionately affects certain communities, namely those born in hepatitis B virus endemic areas such as East and South-East Asia, the Pacific, and Sub- Saharan Africa, as well as Aboriginal and Torres Strait Islander people. For Indigenous Australians, liver cancer is among the top three causes of cancer deaths.

Yet research into perceptions of liver cancer conducted

by Cancer Council Victoria shows the link between chronic hepatitis B and the disease is widely unknown and that prevention is not well understood.

Stigma related to infection status stems largely from misinformation within the community about transmission, with the belief that infection is largely linked to hygiene factors. Many people in affected communities believe their life in Australia, where

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News

Photo CC BC the Path [flickr.com/photos/bc_the_path/536236164]

A cross-section of a cirrhotic liver

eating practices like sharing meals differ from their home countries, protects them from infection.

While much work has been done on the issue within the health and multicultural sectors, this work is impeded by a lack of government coordination, and insufficient funding. A systematic, ongoing, culturally specific approach could ensure measurable investments are made that lead to a reduction of infection and liver cancer incidence.

Both clinical services and access need to be improved— and this will require long-term commitment from government.

Research shows lack of awareness among some GPs about the link between chronic hepatitis B and liver cancer, treatment advances and the availability of funded vaccination for susceptible contacts of people diagnosed

with chronic hepatitis B. With one-third of the 220,000 Australians living with chronic hepatitis B remaining undiagnosed and 87% of those with the condition not receiving appropriate treatment, there is a long way to go to address the needs of people living with this chronic health condition.

It is also important to address some of the myths around chronic hepatitis B, including confusion around transmission methods and the clinically incorrect notion of ‘healthy carrier’ status.

Culturally specific and accurate information on the realities of prevention and management of infection, and how those at risk can protect themselves from infection and liver cancer, is paramount. Clinical services can only be effective if people are aware of the need to access them and are actively involved in their healthcare. Addressing

these gaps in knowledge and false perceptions within the community will save lives.

We need a properly funded and co-ordinated community response, education, access to appropriate testing and treatment for viral hepatitis, and diagnosis support if we are going to have any success in addressing this growing problem.

Ms Enright is manager of priority populations in Cancer Council Victoria’s prevention division. Professor Cowie is a physician and epidemiologist with the WHO Regional Reference Laboratory for Hepatitis B in Melbourne.

This article was first published in Australian Doctor (4 July 2014) and is reprinted with permission of the author and Australian Doctor. See www. australiandoctor.com.au.

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World Hepatitis Day 2014

World Action?

WHO adopts viral hepatitis resolution

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he World Health Organisation has now published the final version of the new resolution on viral hepatitis, adopted at the World Health Assembly last month.

The first resolution in 2010 was ground-breaking and resulted in significant action from the WHO. However, it did not achieve so much at country level, with the exception of more participation in World Hepatitis Day. The new resolution is therefore designed to speed up action from countries by setting out in much more detail what they should do.

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Adopted unanimously; it clearly asks countries to develop national strategies, to improve surveillance of viral hepatitis, to increase use of hepatitis B vaccination, particularly the birth dose and to strengthen prevention measures including infection control and harm reduction.

The resolution also, for the first time, calls on the World Health Organisation and all relevant United Nations funds, programmes and agencies to place viral hepatitis higher up their agendas.

Critically the resolution also asks WHO to develop a system to monitor countries’ progress in tackling hepatitis and to examine the feasibility of eliminating hepatitis B and

C with a view to setting goals.

This is the first time the world community has addressed the idea of eliminating these two viruses. We hope to see WHO suggest clear measurable goals against which countries will be judged.

Almost as important as the resolution itself, 50 different Ministries/Departments of Health from right across the world spoke out at the meeting to strongly support action, to demand better access to treatment, together with increased support from the WHO, to highlight the key place for hepatitis plans in cancer control programmes.

Visit http://bit.ly/1qLLzNG to read the resolution in full.

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Don’t Neglect Prevention!

World Hepatitis Alliance warns of over-reliance on breakthrough treatments

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n the run-up to World Hepatitis Day 2014, the planet’s leading hepatitis NGO was pressing for more focus on prevention New drugs with 90% cure rates are revolutionising treatment for hepatitis C. Safer and with easier, shorter regimens, they offer the possibility of dramatically cutting the death toll from hepatitis C, currently estimated at 500,000 a year.

As a consequence they have been at the centre of a media storm over the past months, with international calls for widespread access and considerable reductions in price.

However, the World Hepatitis Alliance, an international patients organisation, has warned that global health leaders are allowing their focus to be diverted too far onto treatment and are dangerously neglecting essential prevention efforts.

The Alliance is urging World Health Organization Member States to give prevention of hepatitis C as much prominence as access to the new therapies.

Without investment in prevention, there is a high risk that governments will abandon treatment programs when the results are not as hoped. “There are 150 million people living with hepatitis C and even treating a fraction of them will require huge investment from governments, who will be looking not just to reduce deaths but also for decreasing prevalence rates to justify the cost” said Charles Gore, President of the World Hepatitis Alliance.

“If prevention is neglected and governments see no progress towards reducing the numbers infected, I fear they will lose the appetite to continue funding these new drugs.

It is critical that not only is hepatitis prevention promoted but that a mechanism is put in place to establish goals and a system of monitoring action” Although effective evidencebased prevention measures do exist, many countries are still lagging behind in their implementation, resulting in an estimated 3-4 million new infections every year.

Not all countries test donated blood for hepatitis C and not

all those that do use reliable tests; there is widespread reuse and improper sterilisation of syringes and other equipment in healthcare; few countries have adequate harm reduction measures for people who inject drugs.

Despite the lack of resources and international support, the significance of widespread prevention measures is beginning to be recognised by governments. Amongst those calling for increased WHO leadership on viral hepatitis prevention is Pakistan, where almost 8% of the population is infected. Health Minister Saira Afzal Tarar said it is essential to “avoid unnecessary injections and reuse of syringes to prevent hepatitis”.

“Right now there is a huge momentum for action” said Charles Gore. “We absolutely mustn’t lose that by taking a one-dimensional approach.

The new drugs could be gamechanging, but we must see governments and the WHO emphasising prevention as a key part of healthcare systems if the drugs are going to make the global impact we’re hoping for.”

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Hepatitis B Action Plan The launch of SA’s long-awaited response to HBV

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he SA Government has launched its first Hepatitis B Action Plan, recognising hepatitis B as a serious health issue requiring a coordinated response from health services and community based organisations.

There are an estimated 14,400 people living with chronic hepatitis B in South Australia. Of this estimated number only about 6,550 are known.

The Action Plan identified partnerships with communities as key to an effective response to hepatitis B in the state. In addition it laid out six other priority action areas.

Photo CC Christopher Brown [flickr.com/photos/christopherbrown]

The highest prevalence occurs in the Central Adelaide and Hills Medicare Local area.

The seven priorities in the Plan include: • Building partnerships and strengthening community action • Preventing hepatitis B transmission

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• Optimising diagnosis and screening • Clinical management of people with chronic hepatitis B • Development health maintenance, care and support for people with hepatitis B • Knowledge transfer using surveillance and research • Workforce and organ­ isational development.

Photo CC Christopher Brown [flickr.com/photos/christopherbrown]

Leesa Vlahos MP, Parliamentary Secretary to the Premier, launched the Action Plan at the Love Your Liver Marketplace event to mark World Hepatitis Day. The goal of the South Australian Hepatitis B Action Plan 2014-2017 is to reduce transmission and incidence of hepatitis B, as well as reduce deaths from the illness. To that end, the Action Plan has the three objectives of: • reducing rates of newly acquired hepatitis B infection, • reducing the proportion of undiagnosed chronic hepatitis B cases, and • improving the health

and wellbeing of people with chronic hepatitis B through education and support.

The Action Plan identified priority population groups as Aboriginal people and people born overseas as over 70 per cent of known cases in SA are from these communities.

Strategies to prevent transmission include promoting national consistency in eligibility criteria for hepatitis B vaccination, confirming access to the vaccination for priority population groups, increasing the uptake of vaccination in priority populations, improving awareness of hepatitis B prevention through safe sex and safer injecting and improved care for mothers with chronic hepatitis B and their children.

The Stratgy aims to improve clinical management of chronic hepatitis B, there will be trials of innovative approaches to overcome language and cultural barriers where they exist, in order to increase access to on-going care.

The Nursing Model of Care will need to be strengthened to build support and capacity to work with hepatitis B patients and primary care practitioners.

Access to screening for liver disease and liver cancer will also need to be increased with all diagnosed chronic hepatitis B patients to be monitored regularly.

While SA Health leads in the implementation of this Action Plan, it has also identified a number of partners in the implementation process.

They include Hepatitis SA , Aboriginal Health Council SA , Country Health SA, Migrant/new arrival/ detention health services, Gay Men’s Health, Local Health Networks, PEACE Multicultural Services, Primary Health Networks, prisoner health services, SA Health Disease Surveillance & Investigation Section, SHineSA and SIN. All will work together to improve the state of response to hepatitis B in South Australia.

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The Hepatitis Report Card Size and scope of Australia’s Liver Danger Zone revealed

New analysis which reveals the number of Australians with hepatitis B or C who may be in the ‘liver danger zone’ was released for World Hepatitis Day, on 28 July 2014.

Hepatitis experts released a new report showing the number of Australians who have entered the ‘liver danger zone’—the age-point where the impact of viral hepatitis accelerates and the risk of cirrhosis, liver cancer and liver failure increases.

A Brief History of SAVIVE

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e wouldn’t dream of not checking blood pressure and cholesterol in people at risk of heart attack or stroke, so why aren’t people with diagnosed chronic viral hepatitis having their liver health checked regularly?

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The Hepatitis Report Card also includes 15-year projections of chronic hepatitis C-related deaths, liver cancer and cirrhosis in Australia. It calls for investment in the health services. It also highlights the role of GPs and health care providers in encouraging regular liver check-ups for people with viral hepatitis.

Australia’s leading hepatitis organisations urge Federal and State Governments to put in place the funding and resources to support the following blueprint for action.

Regular liver check-ups must become the standard of care for all people living with viral hepatitis.

This is possible if Australia: • Invests in services, equipment and training needed to provide access to high-quality and regular liver check-ups for all Australians with chronic hepatitis B and C each year.

• Educates and empowers primary healthcare providers to ensure that people with chronic viral hepatitis receive regular liver check-ups.

• Increases efforts to diagnose people with chronic hepatitis B and C and improve their awareness of the importance of regular liver check-ups.

Ensuring all Australians with chronic hepatitis B and C are diagnosed and undergo regular liver health checks to track their liver health is critical in preventing nearly 1,000 deaths occurring each year due to viral hepatitis.

This is the first step to avert a liver disease crisis in Australia.

Fast, simple and minimally invasive tests now exist, such as blood tests, FibroScan, and ultrasound scans, to assess the level of damage to the liver.

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World Hepatitis Day 2014

Doctors recommend that regular liver check-ups should be carried out every three, six or twelve months, depending on the stage of liver disease.

Regular liver check-ups allow people living with viral hepatitis to be in control of their liver health and facilitate discussion with healthcare professionals about treatment options and how to slow down the progression of liver damage.

Many Australians living with chronic viral hepatitis are not benefiting from regular liver check-ups. For example, currently, 87 per cent of people living with chronic hepatitis B are not engaged in care and as such do not receive regular liver check-ups.

Experts cite a number of reasons, including low community awareness of the need for regular follow-up, stigma and discrimination, low awareness among healthcare practitioners and lack of service provision. As a result, many Australians with hepatitis B or C are developing serious and life-threatening liver disease.

Some people with hepatitis B have been told they are ‘healthy carriers’. This is incorrect, as we now know there is no such thing as a ‘healthy carrier’ and all people with hepatitis B require life-long regular liver monitoring and may need treatment to prevent complications.

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Michelle hopes the Hepatitis SA CNPs continue to advance.

“In the future HepSA hopes to further expand on our sessional work so our peers can share their knowledge with a broader group of people who use CNPs, and thereby help reduce the risk of blood-borne viruses and other injecting related harms.”

Sue Brownbill, who works at the CNP in Salisbury, dislikes discrimination and has been an advocate in some form throughout her life. That is where the passion for her role as peer educator stems from.

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hen the AIDS Council of SA and SAVIVE closed the doors of their Clean Needle Programs (CNPs) in September 2013, a new door opened for Hepatitis SA as it temporarily took over the coordination of CNP peer education services in South Australia.

Now that service has become permanent, as Hepatitis SA has been awarded SA government funding to continue running the CNP program until at least 2017.

Michelle Spudic, CNP Peer Projects Coordinator, travels to each of the Hepatitis SA CNP sites regularly. The main sites are located at Noarlunga, Salisbury, Port Adelaide and the Parks.

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Michelle says, “Since being established by Hepatitis SA, the program has now implemented ‘sessional peers’ who have regular sessions, about one day a week, at CNP sites run by other organisations.

“This means the peers can see a broader range of people who access CNPs in Adelaide such as Aboriginal people, the homeless, young people and people from non-English speaking cultures.

“As the sessional peers are experienced peer educators they bring with them a wealth of knowledge on harm reduction, safer injecting practices and specialised equipment to the clients of the site they are visiting.”

She says Hepatitis SA CNP workers are non-judgemental.

Individuals can speak to them in confidence knowing their thoughts and feelings will be understood.

Sue explains that a major part of her role is simpy listening to clients.

“Quite often we turn out to be an accidental counsellor,” she says. “We do not have an ulterior motive—only the person’s health around injecting practises, and to assist them in choosing a program that might assist them to get away from drugs if they choose.

“We do not push people into a treatment program. We are here to offer a service of giving clean equipment to clients.

“It is of the utmost importance to me, that clients trust us to keep their information confidential,” she says.

Danella Smith

Shirt image CC end_thewod [flickr.com/photos/end_thewod/2984061867] Street scene CC Monica Reida [flickr.com/photos/monicareida/6013830384]

The CNP at Hepatitis SA

“I do not like discrimination in any form, especially coming from people who do not want to understand another person.”

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Shirt image CC end_thewod [flickr.com/photos/end_thewod/2984061867] Street scene CC Monica Reida [flickr.com/photos/monicareida/6013830384]

Working with Communities

Cake Nation NAIDOC Week Activities in the Adelaide Women’s Prison

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o celebrate the history, culture and achievements of Aboriginal and Torres Strait Islander peoples, Nicole and Claire from our Education team, along with Lisa and Karan from the Outreach Hepatitis C Peer Education and Support Project, attended the Adelaide Womens’ Prison Main Stream and Living Skills Units during 2014’s NAIDOC Week (6-13 July).

The word NAIDOC was once the acronym for the ‘National Aborigines and Islanders Day Observance Committee’.

Historically, the committee was once responsible for organising the national activities during NAIDOC Week.

As this year is the 42nd anniversary of the Aboriginal flag first being flown—the flag was designed by Harold Thomas, a Luritja man from Central Australia—we thought it would be great to acknowledge that the flag was actually first flown here in Tarndanyangga (Victoria

Square), Adelaide, for National nature of NAIDOC Week), were eager to engage with us Aborigines Day, back on 12 and were not shy about asking July 1971. questions. Inevitably, as we are We felt that a way of from Hepatitis SA, the topic celebrating his design, art and of conversation turned to viral connection to country would be to decorate cakes influenced hepatitis; testing, treatment, transmission risks and by the symbolism that the treatment. Like many places we flag represents, as described visit, there were a lot of myths

by Harold Thomas. We each about hepatitis which we were made up icing coloured able to dispel. with black, representing the Aboriginal people of Australia; red, representing the earth, red ochre and a spiritual relationship to the land; and yellow, representing the sun, the giver and life protector.

The activity was well received by the women and provided an opportunity for us all to yarn about a broad range of topics, including inspirational Aboriginal people, the Arts, as well as the importance of liver health, general health and wellbeing.

While decorating the cakes and cupcakes, the women from a variety of cultures and walks of life (reflecting the inclusive

The women, some of whom were contemplating treatment, were interested to hear the recent hepatitis C treatment experiences of Karan, the Peer Educator. She was able to address some of the misinformation about treatment, and provide some personal insights into her own treatment journey.

We hope to build upon the relationships we have begun to establish with the women at the Adelaide Women’s Prison and return soon to provide regular, more formal education sessions regarding viral hepatitis.

Lisa Carter

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News

New Video Explains Role of Viral Hepatitis Nurses

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he viral hepatitis nurses represent a new approach to providing care to people with viral hepatitis.

Introduced in 2011, this model of care is centred on the role of specialist nurses in community settings, who act as a bridge between the patients, GPs and specialists.

People with hepatitis B or hepatitis C can contact the nurses directly to make an appointment. A referral is not needed.

The nurses will also provide advice to GPs on the management of patients with viral hepatitis, including assistance with referral to specialists.

To further promote awareness of this service and explain

the roles of the viral hepatitis nurses, SA Health has produced a 7-minute video where the nurses talk about their work and approach.

The video also features interviews with people who have received care and support from the viral hepatitis nurses.

For more information about services provided by the viral hepatitis nurses, visit: http:// bit.ly/viralhep-nurse-page. To view the YouTube video, go to http://bit.ly/viralhep-nurse-role.

Contact details for the viral hepatitis nurses can be found on the inside back cover of this magazine.

The Beauty in Disease: Artist Rogan Brown creates incredibly delicate sculptures from hand-cut paper which reflect the biological forms of microbes and viruses. See more at roganbrown.com.

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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 future dates 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

CALMING THE C IN THE NORTH Friday, 25 January

Friday, 28 June

Friday, 22 February

Friday, July 26

Friday, 22 March

Friday, August 23

Friday, 26 April

Friday, September 27

Friday, 24 May

Friday, October 25

Warinilla Outpatients Hepatitis C Treatment Clinic 92 Osmond Tce, Norwood Tuesdays monthly 2–5pm Upcoming dates: Aug26 Sep 23 Oct 21 Nov 18 Dec 16 Southern DASSA 82 Beach Rd, Christies Beach Monday monthly 10am–1pm Upcoming dates: Aug 18 Sept 15 Oct 13 Nov 10 Dec 8

Northern DASSA 22 Langford Dr, Elizabeth Thursday fortnightly 10am–12pm Upcoming dates: Aug 7 & 21 Sep 4& 18 Oct 2, 16 & 30 Nov 13 & 27 Dec 11 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

AUGUST 2014 • HEPATITIS SA COMMUNITY NEWS •

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TGA Approves Sovaldi: What About the PBS? Opportunity to turn around Australia’s low treatment rates ‘must not be missed’

N

early a quarter of a million Australians with chronic hepatitis C may soon have a new treatment option following the approval of Sovaldi (sofosbuvir) by the Therapeutic Goods Administration (TGA).

Sofosbuvir is a drug developed by Gilead used to treat hepatitis C infection.

In combination with other therapies, Sofosbuvir can effectively cure hepatitis in 90% of patients. It inhibits the RNA polymerase that the hepatitis C virus uses to replicate its RNA. Sofosbuvir is a component of the first all-oral, interferonfree regimen approved for treating chronic hepatitis C. Interferon-free therapy for treatment of hepatitis C reduces the significant sideeffects associated with the use of interferon.

Hepatitis Australia welcomed the TGA listing as the first step towards making this transformative new treatment—which has a very high cure rate combined with

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low side-effects—available to all Australians who might benefit from it.

Hepatitis Australia’s President, Terry Higgins said, “The approval of a new treatment for people with hepatitis C represents a huge opportunity to turnaround Australia’s lamentably low treatment rates.

“However this opportunity cannot be realised until the Pharmaceutical Benefits Advisory Committee recommends the medicine for listing on the Pharmaceutical Benefits Scheme and the Government subsidises the medication to make it widely available.” he said.

Following the TGA’s approval of Sovaldi, a physician can write a prescription for the medicine, but the full cost of the medicine will have to be paid by the patient, until the Government subsidises the medicine under the Pharmaceutical Benefits Scheme.

Hepatitis Australia’s Acting CEO, Kevin Marriott, said that

without a Government subsidy for this medicine, there will be an ‘insurmountable’ financial barrier to accessing the treatment for the vast majority of people living with hepatitis C. “Australia already has appallingly low treatment rates. Less than 1% of people with hepatitis C receive treatment, and we are already seeing escalating rates of serious liver disease as a result.

“Many people with hepatitis do not display symptoms until their liver starts to fail, so it is important that people who know they are living with hepatitis, or who think they might have been exposed to the virus, speak to their doctor about treatment.

“With the Government launching new National Strategies on viral hepatitis (see p1), we need all Australians to have equal access to this medicine without delay,” Mr Marriott concluded.

• HEPATITIS SA COMMUNITY NEWS • AUGUST 2014

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Resources

New & Back on the Shelf The latest resources at Hepatitis SA NEW Hepatitis B – There’s no such thing as a healthy carrier One common hepatitis B myth in the community is that some people who have the virus are “healthy carriers”.

A result of this belief is that these people think they have nothing to worry about and need do nothing to monitor the health of their liver.

By the time the damage is discovered, it could be too late.

This pamphlet debunks the myth, and explains the need for anyone with hepatitis B to have on-going monitoring of their liver.

Vietnamese and Chinese versions will also be available soon.

BACK BY POPULAR DEMAND

Why Should I Care About Hepatitis?

This pamphlet is for people who inject drugs and who feel that hepatitis – especially hepatitis B – is not their major concern.

It discusses the basics of hepatitis B and C including symptoms, transmission routes and prevention strategies including brief tips on safer injecting.

I Have Hep C – What could happen to me?

This A5 booklet for people newly diagnosed with hepatitis C has been updated and reprinted, and is now back on the shelf. New information includes triple therapy and updated contact details and resources. This booklet was originally produced by Hepatitis NSW and is reprinted with permission by Hepatitis SA Tattoos, body art and hepatitis C in Prisons This colourful eight-page comic tells the story of a prisoner who unwittingly got hepatitis C through receiving tattoos while in prison. The story is simply told and the drawings have a rough reality all the more because they lack the slickness of professionally inked art.

This comic was produced

by Hepatitis Victoria. The South Australian edition is produced by with permission

by Hepatitis SA. All four publications are available on request from Hepatitis SA. To order, visit hepsa.asn.au/orders.

Alternatively, call 8362 8443 or for country callers on 1300 437 222 (local rate).

AUGUST 2014 • HEPATITIS SA COMMUNITY NEWS •

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In Our Library New to the Library Here are a few of the recent items to be added to our library...

Liver Tests Explained, British Liver Trust, London, 2014 This 52-page booklet from the British Liver Trust looks at the different liver tests you may encounter and explains how they are used in the diagnosis and treatment of liver disease.

It includes explanations of liver functions, categories of liver diseases and some of the medical terms used. This booklet can be downloaded from the BLT website. (www.bit.ly/livertests_ britishlivertrust)

This is a series of 10 You Tube videos, each with a simple message or tip for young people who have a parent with a mental illness.

Liver Biopsy/FibroScan, Sydney ; Hepatits NSW ; 2010 FibroScan, HPSP Factsheet, San Francisco ; HCSP ; 2013 These two fact sheets provide useful information on liver tests. The HCSP fact sheet deals specifically with FibroScan and is a useful companion to the Hepatitis NSW fact sheet which

discusses a range of tests but touches only briefly on FibroScan.

The NSW fact sheet discusses when you may need to have further tests, ie when blood tests are insufficient.

It explains in simple terms the options available for determining the level of cirrhosis, the reliability of results and the pros and cons of the tests. It is available online (www.bit.ly/ hepc_liver_biopsy) or by contacting Hepatitis NSW. The HPSP factsheet can be downloaded from the HCV Advocate website (www.bit. ly/hcsp_fibroscan).

What you need to know: So you have a parent with a mental illness…

Children of Parents with a Mental Illness (COPMI), Adelaide, 2014 www.bit.ly/ parentalmentalillness_ whatyouneedtoknow

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• HEPATITIS SA COMMUNITY NEWS • AUGUST 2014

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

Street: Mail: Phone:

Fax: Web: Email:

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

STAFF Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter

20 YEARS!

In September, Hepatitis SA (formerly the Hepatiti s C Council of SA) will be celebrating its 20th 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

Hepatitis SA Helpline Volunteers: Louise Debra Karan

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

Education Coordinator (Acting): Shannon Wright Educators: Claire Hose Damian Creaser

Editor: James Morrison Non-staff Contributor: Danella Smith

Hepatitis B Coordinator Jenny Grant Information and Resources Coordinator: Cecilia Lim Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims Information and Resources Volunteers: Ram Sandy Jo

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

Contents 1

National Hepatitis Strategies

2

Urgent Action on Hep B

4

WHO for WHD

5 Prevention 6

SA’s Hep B Action Plan

Peer Educator Mentor: Fred Robertson

8

The Hepatitis Report Card

Peer Educators: Dean Karan Mark Penni Will

10 CNPs

CNP Peer Projects Coordinator: Michelle Spudic CNP Peer Projects Officer: Carol Holly Margie Sue

Mark

11

Cake Nation

12

Viral Hepatitis Nurses

13

What’s On

14 Sofosbuvir

BOARD

15

New Resources

Chairperson: Arieta Papadelos

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In our Library

Vice Chairperson Bill Gaston

Treasurer: Howard Jillings Senior Staff Representative: Kerry Paterson

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Hepatitis SA Helpline 1300 437 222 (cost of a local call)

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

Call Hepatitis SA on 1300 437 222 for a referral.

AIDS Council SA ACSA has closed down.

See p3 of issue 61 for details and replacement service contact details. beyondblue Mental health information line 1300 224 636 www.beyondlbue.org.au Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service.

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

(08) 8447 8821

Secretary: Lindsay Krassnitzer

Ordinary Members: Gillian Bridgen Nicci Parkin Jeff Stewart

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au

Amita Gurung

Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold

CNP Peer Educators: Kylie Justin Patrick Penni

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

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.

headspace Mental health issues are common.

Find information, support & help at your lcoal headspace centre

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

1800 650 890 www.headspace.org.au

(08) 8245 8100

Lifeline National, 24-hour telephone counselling service.

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

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

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

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

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

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

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

(08) 8406 1600

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

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

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

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

Central & North:

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

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

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

23/07/2014 10:42:44 AM

Community News

#64 • August 2014

World Hepatitis Day 2014 SA’s Hep B Action Plan • National Hepatitis Strategies CNPs at Hepatitis SA • Sofosbuvir Approved by TGA

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FREE! Please take one

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