#59 HepSA Community News

Community News

#59 • April 2013

More than Art

Hep B Survey • Quizzical Response • Side Effects Penni’s Story • The Silent Pandemic

coverpages_59.indd 1

FREE! Please take one

18/03/2013 12:06:19 PM

WIN!

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@hepsa.asn.au

STAFF

The best contribution pr inted in each issue of the Hepatitis SA Comm unity News will receive a $25 shopping vouche r.

Write to us about anythi ng to do with the magazine, Hepatitis SA , your personal experienc es living with hepatitis, or living well ideas.

Email us at editor@hepa titissa.asn.au

About the Cover

Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Acting Information & Support Coordinator: Fred Robertson Information and Support Line Volunteers: Debra Fred Janette Karan Louise Michele Will

Front cover art by Anthony David, photography by Dean Harris.

Back cover art by Eric Guerkin, Shane Sumner, Tony Lovegrove and Anthony David. Photography by Dean Harris.

See story More than Art on page 8.

Education Coordinator: Tess Opie

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

Educators: Nicole Taylor Michelle Spudic (Rural) Imogen Dayman Shannon Wright

Issue 59 editorial and production team: Alyona Haines, Bryan Soh-Lim, Cecilia Lim, Joy Sims, Rose Magdalene

Hepatitis B Coordinator Elaine Lloyd Peer Education Coordinator: Maggie McCabe Assistant Peer Education Coordinator: Bill Gaston

1 News

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

Contents

Mark Will

Information and Resources Coordinator: Cecilia Lim Information and Resources Volunteers: Alyona Amanda Dayna Phil Philip Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Project Officer: Alyona Haines Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos

2

The Silent Pandemic

3

New drugs approved for PBS

4

Quizzical Response

5

Meet Emma and Trish

6

First Step

8

More than Art

12

Getting on with Life

14

Stay in Charge

15

Rural Education

16

In Our Library

insert photo from stories here

Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Carol Holly

Catherine Ferguson Jeff Stewart

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

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline 1300 437 222 (cost ofa 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 Peak HIV/AIDS body in South Australia.

(08) 8334 1611 www.acsa.org.au beyondblue Mental health information line 1300 224 636 www.beyondlbue.org.au

insert photo from stories here

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

1300 131 340

insert photo from stories here

Vice-Chairperson: Lisa Carter Secretary: Lindsay Krassnitzer

Useful Services & Contacts

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 Menatl 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.

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

13 14 65 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

SANE Australia National helpline free call number.

Available 9am to 5pm, Mon to Fri. 1800 187 263 www.sane.org SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

(08) 8351 7626 SAVIVE Clean needle program and peerbased support information and education for people who use drugs.

(08) 8334 1699 The Second Storey 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 & assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for appointment.

Community Access & Services SA (Formerly Vietnamese Community in Australia SA Chapter) Alcohol and drug education; clean needle program for the Vietnamese and other communities.

Central & North:

(08) 8447 8821

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

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

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.

Ella Grace is beautiful

coverpages_59.indd 2

21/03/2013 11:35:10 PM

News

A research collaboration by Saint Louis University, the University of Pittsburgh and the University of Missouri has found a way to measure and block a previously unstudied hepatitis B enzyme.

The enzyme in question – ribonuclease H – is vital to the hepatitis B virus’ replication.

Researchers say that this discovery could lead to new drugs for treating hepatitis B.

that if the mother is hepatitis B positive of HBeAg-positive or highserum HBsAg, and the child did not receive a hepatitis B immune globulin (HBIG) vaccination on the day of birth, the child will have a 29 percent risk of contracting hepatitis B by senior-high school age.

has said she will “have a look at” what’s happening with the needle exchange program in a Canberra prison.

The risk drops to 19 percent if the child received a HBIG injection on the day of birth.

In WA’s Bandyup Women’s Prison, more than 70 per cent of detainees are infected with hepatitis C – a figure drug and alcohol groups say is staggering, and only made worse by the sharing of dirty needles and syringes amongst prisoners.

A previous study conducted by the team showed that one-sixth of

A spokeswoman for the Minister said the West Australian matchstick / SXU

New drugs possible after Researchers block vital hepatitis B enzyme

The team also found that several drugs effective for HIV treatment also work against the hepatitis B virus.

Early diagnosis key to hepatitis C prevention Scientists in Greece say they have worked out the hepatitis C virus’ pattern of spread, and shown that early diagnosis is key to preventing epidemics.

The study in IDUs looked at four hepatitis C epidemics in Greece, using data from 943 patients from 1995 to 2000 and genetic information from 100 virus samples.

Each infected person was found to have spread the virus to 20 other people, 10 of those within the first two years.

This suggests that programs focusing on early diagnosis and treatment in high-risk groups could prevent many new infections.

From: BBC News – 1/02/2013

Study shows hepatitis B vaccinations can wear off A recent study by Mackay Medical College in Taiwan has found that a significant number of adolescents lose their protection from hepatitis B infection despite having been vaccinated as infants.

The study tracked 8,900 teenagers over ten years, finding

ericanfly / SXU

From: Vaccine News Daily – 7/02/2013

One-sixth of children born to hep B positive mothers lose their immunity by senior-high school age, despite being vaccinated as infants.

the 2,000 children born to hepatitis B positive mothers studied lose their immunity by senior-high school age, despite receiving vaccinations as infants.

Government is not currently considering a trial in WA prisons.

From: ABC News – 24/01/2013

From: Taipei Times – 31/01/2013

Promising results from hep C vaccine trial

World’s first hepatitis E vaccine

An early clinical trial of a hepatitis C vaccine by researchers at Oxford University has promising results.

The world’s first hepatitis E vaccine, Hecolin, is now available in Xiamen, China, after 14 years of research, trials and development by Xiamen Innovax Biotech Co., Ltd., and Xiamen University.

The vaccine went to market in China late last year, and is available in Xiamen’s centres for disease control and prevention, community clinics, hospitals and other medical organizations.

From: Vaccine News Daily – 29/01/2013

WA to “look at” needle exchange in ACT prison The West Australian Mental Health Minister Helen Morton

The vaccine – which targets the inner workings of the hepatitis C virus instead of variable surface markings – was created by modifying samples of the Common Cold with genetic material from the hepatitis C virus.

The vaccine was given to fortyone healthy patients in the Phase I trial, and according to researchers, produced a “very strong” immune response lasting for over a year without major side-effects.

Further trials will involve giving the vaccine to people at-risk of hepatitis C infection to see if it protects them from the virus.

From: BBC News – 4/01/2013

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 1

1

18/03/2013 12:32:17 PM

News

The Silent Pandemic Economist Intelligence Unit Report

A

recent investigation by the London-based Economist Intelligence Unit (EIU) into the extent of hepatitis C infection worldwide, described hepatitis C as a “silent pandemic” and “an iceberg looming in a fog of uncertainty”.

The EIU report said hepatitis C may be the serious disease which most combines widespread prevalence with widespread ignorance.

Sponsored by Janssen Pharmaceutica NV and released in December 2012, The Silent Pandemic: Tackling Hepatitis C with Policy Innovation report called for co-ordinated, innovative approaches to minimise the impact of the hepatitis C virus.

It noted that while hepatitis C infection is more prevalent in developing countries, it also affects developed nations to a great extent.

In the United States, hepatitis C is now a bigger killer than HIV. Citing the World Health Organisation (WHO), the report pointed out that this entirely preventable and largely curable disease, hepatitis C, kills 350,000 people a year worldwide; and the number is set to rise. A hundred and fifty million people live with chronic hepatitis C infection with 27 per cent of all cirrhosis cases and 25 per cent of all primary liver cancers traceable back to the disease.

According to the report, about 60 to 70 per cent of those with hepatitis C – develop chronic liver disease.

An estimated 20 to 30 per cent of these develop cirrhosis of the liver which can lead to liver cancer. It pointed out that the healthcare cost

2

of these “end-stage conditions” of hepatitis C can be substantial.

Tackling hepatitis C can be difficult, with widespread misconceptions among the general public as well as healthcare practitioners. The report quoted results from a 2011 Hepatitis Australia survey which showed that only 20 per cent of the Australian public believed that hepatitis C could cause cancer.

It also reported that people were reluctant to undergo treatment, because of potentially significant side effects. It quoted Achim Kautz, manager of Deutsche Leberhilfe (German Liver) saying, “A lot of patients are still waiting for one pill a day for a month with no side effects”. During the time spent waiting for better treatment options, people can develop serious complications.

Sixty-three per cent of the world’s injecting drug users have hepatitis C. Few are treated due to their unwillingness to undergo diagnoses and treatment. This is largely due to stigma and discrimination they encounter with health care providers. “Health systems are often the worst at discriminating against people who they think will be tricky,” the report quoted Charles Gore, President of the World Hepatitis Alliance. In addition, many people who are not drug users are unwilling to get tested for the disease, due to the stigma associated with hepatitis C. The EIU report said the hepatitis C pandemic could be even bigger than currently estimated as many countries have poor records.

The report urged governments to concentrate on gathering accurate data, in order to have innovative, tailored responses to curb the pandemic.

It said prevention must be implemented in all countries to curb the spread of infection.

Strategies could include public awareness raising, blood screening, and promotion of use of sterile equipment.

The report discussed strategies adopted by some countries such as a mass media and online campaigns in The Netherlands, the introduction in the United States of hepatitis C screening for baby boomers and the Hepatology Nurse Practitioner program in Western Australia. It also included a case study on the Scottish Action Plan 2008-2011 which was often cited as an example of good practice.

The full report may be viewed via our online collection at http://bit.ly/ silent_pandemic. 

I

n response to the Economist Intelligence Unit (EIU) report, Hepatitis Australia has called for more needle exchange programs as a part of preventive measures to reduce the spread of hepatitis C. ‘‘We would dearly love to see injecting equipment in service stations, in late-night convenience stores because the primary needle and syringe programs are open only from nine to five and that’s limiting access and service,’’ Hepatitis Australia President Stuart Loveday told the media.

Mr Loveday said an expansion of needle and syringe program outlets was needed.“ We need a proper official look at what the impact of the drug laws is in Australia on blood-borne virus transmission,” Mr Loveday said.

He congratulated the ACT government on its proposal to introduce a needle-exchange program in Canberra’s prison, pointing out that prisons were a “hotbed of hepatitis C transmission” and needle exchange programs were “absolutely essential” to reducing blood-borne virus transmission in prisons.

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 2

18/03/2013 12:32:17 PM

News

New hep C drugs approved for PBS Boceprevir & telaprevir get the green light

T

subsidies treatment would cost up to $78,000 for individuals.

“These breakthrough medicines represent new hope for patients with hepatitis C,” Ms Plibersek said.

“In many cases, this virus can progress into life-threatening conditions such as liver failure and liver cancer.”

Ms Plibersek said these medicines could double the cure rate and reduce treatment duration by six months.

Hepatitis Australia has welcomed the listing of the two medicines, stressing the urgency of making new treatments available.

vierdrie / RGBstock

wo ground-breaking new medicines – telaprevir and boceprevir – have been added to the Pharmaceutical Benefits Scheme (PBS) list, potentially benefiting 130,000 people, a significant proportion of the estimated 225,000 Australians living with chronic hepatitis C. The government will provide more than $220 million over five years to subsidise the treatment of chronic hepatitis C (genotype 1) in people aged 18 year or older.

Announcing the decision on 19th February, Federal Health Minister, Tanya Piblersek, said that without

More Needle Exchanges Needed In its media release on the EIU report, Hepatitis Australia quoted report contributor, Jack Wallace from La Trobe University and executive member of the Coalition for the Eradication of Viral Hepatitis in Asia and the Pacific.

“Eighty per cent of cases of hepatitis C in Australia are contracted through unsafe injecting drug use,” Mr Wallace said. “Whether a person contracted the blood-borne virus through drug use or other means, few are prepared to admit to having the infection and many delay testing and treatment.”

Only about two per cent of people receive treatment every year Mr Wallace said. “The full impact of hepatitis C is only starting to be felt in Australia.

“Hepatitis C is the leading cause of liver transplantation, but this is just the tip of the iceberg.”

Mr Loveday agreed that increasing hepatitis C treatment rates in Australia is both a priority and a challenge.

“Right now new hepatitis C treatment options offer a high chance of cure for people with the most common and hardest to treat strain of the hepatitis C virus, genotype 1.

Hepatitis Australia hopes these drugs are listed on the Pharmaceutical Benefits Scheme in the near future,” Mr Loveday said.

“As treatment options improve, Australia will need to expand its access to treatment delivery to reduce the risk of people developing life-threatening liver disease,” Mr Loveday added. 

Chief Executive Officer Helen Tyrell said chronic hepatitis C is a major and increasing public health burden pointing out that hepatitis C is the primary, underlying reason for liver transplants in Australia and has overtaken HIV as the number one major cause of death from a bloodborne virus.

When used in combination with the current treatment regime, these medicines increased the cure rate to 75 per cent for people with the most common and difficult to treatment strain of hepatitis C. “Boceprevir and telaprevir are the first new advances in hepatitis C treatment in over a decade and these innovative new medicines offer a significant opportunity for those who urgently need treatment to achieve a cure, even if they have been unsuccessful with hepatitis C previously,” Ms Tyrell said.

Telaprevir and boceprevir shared the Prix Galien Award, for best pharmaceutical agent in 2012. This is an internationally recognised award considered the highest accolade for pharmaceutical research and development.

To find out more about the new medicines and your eligibility, contact Hepatitis SA on 1300 437 222, or call a hepatitis C nurse on one of the numbers listed on the back inside cover of this magazine. 

Did you know?

Besides being the leading cause of liver transplants in Australia, hepatitis C, together with hepatitis B, is contributing to primary liver cancer becoming the fastest growing cause of cancer deaths in Australia.

See Hepatitis SA Community News issue 58, and read full text of letter to the Medical Journal of Australia from epidemiologists Jennifer MacLachlan and Benjamin Cowie, at http://bit.ly/fastest_growing_cancer_death.

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 3

3

18/03/2013 12:32:17 PM

From the Community

Quizzical Response W

hat do you do when your husband receives a shock diagnosis of hepatitis C and you are both confronted with stigma and discrimination? Organise a quiz night!

This was what Jo Sloan decided to do after her husband Les received an unexpected hepatitis C diagnosis.

Jo and Les were told that he’s had the virus for 25 or 30 years, and this has resulted in cirrhosis of the liver. At this stage Les’s specialist has not offered any treatment.

To support Les, Jo started doing research on hepatitis C. “I wanted to learn more about it so I could help my husband in any way possible. It has meant a lot of big changes to our lives. I visited the Hepatitis SA website and got some more information. I also joined a Hep C group on Facebook,” she said.

Since discovering Les has hepatitis C, the couple found themselves being judged by others.

“We encountered discrimination and prejudice as a lot of people automatically assume that if you are hepatitis C positive, you are either a drug addict or sexually promiscuous,” Jo said. “This lack of

4

information and understanding is what led me to organise a quiz night fund-raiser.

“With what I have learnt over the past 18 months or so, I felt that the community in general really needed more information. As with most medical conditions we don’t look into it until we ourselves have it, or someone we love does.”

Jo’s friends, Susan Forsyth, Natalie Pope and Amanda Josephs, have stepped in to help her with the quiz, in the hope that it will reduce ignorance and dispel common misconceptions about hepatitis C within the community.

Jo, Amanda and Susan have previously organised four Girls’ Night In and Biggest Morning Tea fundraisers Cancer Council SA and Natalie is a quiz night veteran having organised them before for other charities. Funds raised this time will go to Hepatitis SA. The quiz will cover the usual general knowledge and trivia but will also include a section on hepatitis C. “We hope not only to raise much needed funds but also to raise awareness about hepatitis C,” Jo said.

She said raising awareness about hepatitis C would mean a lot to people affected by it because people with hepatitis C were often left in a lonely world making them feeling like lepers, by uninformed family, friends and colleagues

Courtesy of Natalie Pope

Friends challenge hep C stigma

“Word needs to get out that hepatitis C cannot be caught through casual contact, that it’s possible for people to have the virus without even knowing and that early detection can make all the difference,” she said.

Jo said if the fundraiser turns out to be successful, she would like to make it an annual event. For the time being, Les’s health is her main concern. “My ultimate wish for me and my family is for my husband to be clear of the virus.”

Jo’s quiz night will be held on the 6th of April at the Denison Centre in Mawson Lakes starting at 6.30pm. All are welcome to attend. For bookings, call Natalie Pope on 0466 888 922 or email nataliepope@yahoo.com.  - Alyona Haines Picture L-R: Natalie Pope, Jo Sloan, Amanda Josephs, Susan Forsyth.

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 4

18/03/2013 12:32:18 PM

New to the Community

Meet Emma and Trish New hepatitis nurses talk to the Community News

Emma Tilley (Photography: C.Lim/ Hepatitis SA)

“I studied nursing in Adelaide and stayed here for a couple of years until I felt the need to travel,” she recalled. “Nursing is a kind of job that you can do anywhere in the world.

“It took me all over, including some interesting places like London and Nepal. After 10 years in emergency and remote nursing in the Northern Territory, I decided to come back to Adelaide.”

Emma had worked in sexual health and blood borne viruses, becoming familiar with hepatitis C. “I saw an opportunity to be a hepatitis C nurse in October last year and I took it, because I generally enjoyed working in that area.”

To contact the hepatitis C nurses, call or email them directly (See contact details on back cover) or get a referral from Hepatitis SA by calling 1300 437 222.

She conducts education sessions for people who may be at risk of, or already have, hepatitis C. She also manages patients through their hepatitis C treatment journey. “I work hand in hand with doctors and relevant organisations to refer people to services best suited for them,” she said.

Emma believes there is a need for more widespread education about hepatitis C. “There are misconceptions about hepatitis C in the general public and the medical community, as people need to be interested in it to be properly informed.”

“I meet regularly with Hepatitis SA workers to bounce off ideas,” she said.

“We constantly refer clients to each other’s services.”

Emma is located at the FMC and services the southern region of metropolitan Adelaide. The doctors that she works with also service the Riverland, Naracoorte and Mt. Gambier.  - A. Haines

T

rish Inslay has worked in public health all her life and pshe believes it’s best to deal with clients in a community setting, before their problems becomes significant enough to send them to hospital.

Trish recently joined the team of hepatitis C nurses, working in the central and north of the Adelaide metropolitan area.

“I mainly work with clients from northern suburbs at Elizabeth GP Plus, as well as northern DASSA once a month.

Often people would see the specialist without having enough blood tests and scans done, which results in them being sent back to do the tests, and then having to wait again for another appointment,” Trish said.

“I see clients before they see the specialist, and ensure that they have everything ready for their appointment. Our team

of hep C nurses see clients all through their hepatitis C journey, including treatment. We check up on their health and wellbeing, and ensure they are doing well.”

Trish said the service provided by hepatitis C nurses frees up the hospital system and is, financially speaking, a good option.

“It’s also nicer for clients to interact with a health care professional outside of a hospital.”

“Part of what I do, is educating people, including medical practitioners, about hepatitis C. There are still a lot of misconceptions out there about the disease, which can often hinder people’s willingness to seek help.”

Trish said she refers her patients to Hepatitis SA’s Calming the C in the North support group as it is helpful to people who feel isolated.  - A. Haines

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 5

Trish Inslay (Photography: C.Lim/ Hepatitis SA)

N

ursing took Emma Tilley all over the world but eventually led her back to Adelaide as a hepatitis C nurse with the Flinders Medical Centre (FMC).

5

21/03/2013 11:05:31 AM

New to the Community

First Step Statewide Hepatitis B Coordinator to investigate services for a growing need

T

here is an increasing need for hepatitis B related services in the health and community sector in South Australia. This is supported by documents such as the National Hepatitis B Strategy 2012 - 2013, data collected by agencies such as hospitals and Hepatitis SA, as well as anecdotal evidence.

Hepatitis B Facts

C. Lim / Hepatitis SA

To begin to meet the need for a coordinated approach to hepatitis B service provision in South Australia, SA Health has provided funding for a Statewide Hepatitis B Coordination Project, at Hepatitis SA.

Raise Awareness Elaine (Laney) Lloyd who started as the HBV Coordinator in August 2012, explained her role, “My job is to raise awareness of hepatitis B activities such as screening, vaccination, treatment and monitoring, and to act as a coordinating point for hepatitis B activities within the state.

“Part of the role also includes providing education and training to the workforce, as well as collaborating with relevant agencies to link clients and their communities to information about hepatitis B services.

“It also includes sourcing and developing appropriate hepatitis B resources.”

Laney said an important first step was to undertake an environmental scan of hepatitis B activities already occurring in South Australia and 6

a project steering committee was established to oversee this task.

Representatives on the Hepatitis B Coordination Project Steering Committee were drawn from a cross section of agencies which work with targeted communities, and are already directly providing some level of hepatitis B services.

Environmental Scan The Committee currently includes representatives from the Aboriginal Health Council of South Australia, Viral Hepatitis Nurses, Hepatitis SA, Migrant Health Service SA, Relationships Australia PEACE Multicultural Service, SA Health STI/ BBV Section and SA Prison Health.

The environmental scan will give an overall picture of where services exist geographically, who is providing hepatitis B related

An estimated 209 000 people were living in Australia with hepatitis B in 2011.

An estimated 382 deaths in Australia in 2011 were attributed to chronic hepatitis B. In South Australia in 2011, 412 people were diagnosed with hepatitis B. Of these nine were new infections.

There is a safe and effective vaccination for hepatitis B. It is considered to be the first anti-cancer vaccine developed as hepatitis B, if left unmanaged, can lead to liver cancer.

Hepatitis B cannot be cured but with regular monitoring, can be managed effectively.  (Statistics source: HIV, viral hepatitis and sexually transmissible infections in Australia. Annual Surveillance Report2012, Kirby Institute.)

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 6

18/03/2013 12:32:20 PM

services, the level and nature of services and so on.

“It will also help identify any gaps or barriers to service provision as well as what is currently working well,” said Laney.

“It is really important to emphasise that hepatitis B is a silent disease. You may have it and not know it as the symptoms are very vague, such as: tiredness or flu-like symptoms from time to time”.

Lost to the system At the time of writing, Laney has completed a number of interviews, and she thinks that clinical services here are good once a person is diagnosed and enters the system with regular monitoring.

“The issue lies with all those who are not diagnosed and those who are diagnosed but then become lost to the system because they don’t return for regular monitoring,” she said. (See Are YOU at risk? on this page.)

When completed, the report will inform the South Australian Hepatitis B Action Plan which is currently being developed by SA Health.

To find out more about this project, contact Laney on 8362 8443 or email elaine@hepatitissa.asn.au.  - Cecilia Lim

CNP Hepatitis SA

Monday - Friday 9am - 5pm Full range of syringes and needles. Water and filters also available for sale.

Are YOU at risk?

Population groups identified as being at higher risk of hepatitis B are: dd People from culturally and linguistically diverse backgrounds (i.e. if you come from a non-English speaking cultural background) dd Aboriginal and Torres Strait Islanders dd Children born to mothers with chronic hepatitis B (pregnant women) dd Unvaccinated adults at higher risk of infection e.g. living with a person with chronic hepatitis B, sexual partner of a person with hepatitis B or people who inject drugs.

If you fall into one of these groups, ask your GP for a hepatitis B test. If you need more information: dd call the Hepatitis Helpline on 1300 437 222 dd contact us for the factsheets,12 fast facts about Hepatitis B, 12 Questions to ask your GP about hepatitis B and 12 Questions to ask your GP about hepatitis B testing.

Become a Member Hepatitis SA provides information, education and support to people affected by viral hepatitis and those at risk. A strong membership is essential to our work.

Individual membership is FREE and includes Library membership.

Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071, or fax 08-83628559.

Your Details Member type New Renewing Title: ___________________________ Name: __________________________ Occupation: _____________________ Address: ________________________ _______________________________ Phone: _________________________ Email: __________________________ Signature: _______________________ Hepatitis SA Inc is aware of the need for privacy and endeavours to comply at all times with the Privacy Act 2001. As such, any information provided by you is accessed only by authorised personnel and will remain strictly confidential. To change or access any personal information we hold about you, please write to the Manager at the above address.

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

Vaccination You may be eligible for free hepatitis B vaccination. To find out if you are entitled to free hepatitis B vaccination, go to: www.sahealth. sa.gov.au/freehepbvaccine, or call the Hepatitis SA Helpline 1300 437 222 (1300 HEP ABC). 

Call Us!

post

please don’t send me anything Or, except notifications required by law.

Donations I would like to make a donation of $___________ GST does not apply. Donations over $2 are tax deductible.

OFFICE USE ONLY TIS

Peer Ed

For free, confidential information and support on viral hepatitis call:

Membership entered

1300 437 222

Library card sent

Library membership entered Member pack sent



Member pack order entered

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 7

7

18/03/2013 12:32:20 PM

Cover Story

More than Art A

t Lakalinjeri Tumbetin Waal Frahns Farm, art is a part of the scenery.

Residents create carvings and paintings as part of their rehabilitation journey.

The artworks include carved emu eggs as well as paintings on stones, tree trunks and canvasses; and the artists who made them come from mixed artistic backgrounds and experiences.

This is reflected in the art pieces which range from simple to very sophisticated designs.

“Participation in arts projects is optional,” said Frahns Farm manager, Craig Minervini, “but 99 per cent of clients take it up. Even fellas who have never painted before jump in.”

The link between arts and health is now well accepted. The art activities at the Frahns Farm rehabilitation centre in Monarto is just another example of the value of art as a medium for engagement and an aid to recovery.

Therapeutic Art at Frahns Farm is more than just art. “We are really big on encouraging our clients to be involved in art projects for a number of reasons,” said Craig.

“It’s therapeutic… gives them something to think about, and it takes their minds away from other things in their lives.”

In creating the artwork, there is also the element of completion, Craig explained. “There’s a starting point and an end point.

“There’s also the teaching aspect of the experience,” he added. “On the way through, participants learn a lot more than painting.”

Participants, he said, learn and develop life skills along the way. “They learn to plan, to think ahead... doing things in order… going through step by step.”

The actual paintings or artworks themselves are also really important to the clients in their recovery because they touch on the cultural aspects of their

8

lives and keep them in touch with their culture.

Craig said art had always been there at some level at Frahns Farm, but they have now “taken it to a new level” because there is now a greater understanding of what clients get out of it.

“It’s an invaluable tool,” he said.

Share ideas Hepatitis SA peer educator, Karan, who visits Frahns Farm once a fortnight together with fellow peer educator, Dean, agrees.

“It’s a really good way to get the conversation going and to share ideas,” she said. Karan and Dean will be starting a mural project with the Frahns Farm residents in the near future.

This enthusiasm for art as an education tool is shared by the rest of Hepatitis SA which has been using art as an engagement tool in education as well as resource development for some time.

The recent “Going Viral” project (See story on page 11) is one such example, as are the on-going Women’s Circle of Health at the Adelaide Women’s Prison and work at The Woolshed.

Artist and Hepatitis SA supporter, Maureen Cook who recently held an exhibition of her work depicting her treatment experience says the organisation’s use of art in its work is clearly visible to her.

“I think Hepatitis SA uses art well in health promotion, such as your digital story telling projects. There always seems to be an inclusion of art in the work by Hepatitis SA.”

Relaxing Hepatitis SA Peer Education Coordinator and practising artist, Maggie McCabe, sums it up: “Art is a powerful way to engage with community

Artworks by Anthony David, Eric Guerkin, Maureen Cook, Tim Lovegrove and Shane Sumner.

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 8

18/03/2013 12:32:23 PM

memb partici is rela where their l “Fo in pris focus their c somet oppor For health me pr alway

“It helps me contextualise my issues and make sense of them. This enables me to learn how to deal with what is happening in my life.”

Connection

t (See mple, e of rison

r,

g is

ell in gital seems k by

members. It creates a space where participants can talk about issues. It is relaxing and creates a state of mind where people can let go of the stresses in their lives.

“For many young people, and people in prisons, the art activity provides a focus and a tool for them to celebrate their culture or express themselves… something they won’t normally have the opportunity to do.”

For Maureen, art is essential to her health. “Art is the vehicle which helps me process my life situation, which always includes my health,” she said.

She uses art to communicate her experiences and emotions. “Hearing people’s stories is a strong way of getting information across and using art to tell the story is a powerful means of communication,” she said.

“My recent exhibition at Gallery M focussed on my treatment for hepatitis C, the side effects that put me in intensive care and my recovery from that near death experience.” (continue next page)

LTW is a non-medical ‘dry’ rehabilitation centre managed by the Aboriginal Sobriety Group.

Lakalinjeri Tumbetin Waal, meaning ‘clan, family, community’ healing place, adopts a holistic approach by treating the underlying grief as well as the disorder.

The programs encompass traditional cultural methods of teaching and learning, which increase the effectiveness of the recovery process.

The common beliefs and rituals of various clans are considered, so that all communities can share in the healing process.

(Source: www.aboriginalsobrietygroup.org.au)

“...art activity provides a focus and a tool for them to celebrate their culture or express themselves…something they won’t normally have the opportunity to do.”

sa munity

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 9

9

18/03/2013 12:32:25 PM

Cover Story - More than Art (from previous page)

The art created out of that experience enabled her to connect with other people. “So many people shared their stories with me about themselves their friends and relatives who had battled with major illness, death or near death experiences. This was a rich and validating experience for the viewer and for me to hear their story as well.”

National Framework

John Hill at C-Pix exhibition launch 2010 - J Morrison/ Hepatitis SA

The application of arts in health can be considered in the context of art in health care design, art programs (performance, exhibitions) in health care services, art therapy (visual, dance, music, drama), communitybased (participatory) arts, and arts and humanities in health professional education.

Against this background, a National Framework for Arts and Health is being developed.

According to the Arts and Health Foundation, this framework is expected to be finalised after a meeting of the Australian Government’s Standing Council on Health (members include the Federal Minister for Health and all State and Territory Health Ministers) in April this year.

For more information, visit www. artshealthfoundation.org.au.  - Cecilia Lim

John Hill on the healing power of art One of the strongest advocates for the arts in health is former SA Health Minister, John Hill who in a radio interview recently, spoke passionately of the importance of the arts in aiding healing.

Mr Hill told listeners about an experience at the Flinders Medical Centre, which “demonstrated the power of art to make changes”. “…Several years ago… there was an artist who was doing... a skyscape down one of the long empty corridors – it was a 15, 20 m long painting a metre high.

“She was painting clouds and sky ...while wearing a wedding dress.

She was cleaning the brush on the side of her dress, which was part of the performance.

“She had a guy on a cello playing some classical music...that was very mellow, very evocative…

10

Young refugee “Going Viral” participants de scribe their artw ork: “This is a pictur e of a healthy liver with a happy face and an un healthy liver with a sa d face because it has hepatitis.”

“...the day I went there, there was a young girl who had Down Syndrome who was painting a very small section of this painting. I went up and started chatting ...the girl’s parents came up to me.

“They said this was a miracle … they’d been told a day or two before that their daughter didn’t have much longer to live. As she was going off for a test, she came past this painting, her eyes lit up and she developed a will to live... and she was participating in this artwork. It really was transformative - for that one girl, and I thought, well if you can do that for one girl, what can you do across the whole system?”

To the delight of John Hill and his interviewer, the mother of the girl in the story rang during the interview, to say that her daughter was still with them and doing well. 

“This is the wor d hepatitis - th ere are syringes in the background be cause this is the mos t common way to get hepatitis C.” “There is bloo d in the middl e of this picture with a cross through it and two hands whi ch are staying away from the bloo d because ther e could be hepatitis C virus in it.”

“These are the small virus’ entering the blood stream.”

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 10

18/03/2013 12:32:27 PM

What’s On

Going Viral Street art workshops

Hepatitis C peer educators available to provide information and support to clients at the following services: Warinilla Outpatients hepatitis C treatment clinic 92 Osmond Terrace Norwood Tuesdays fortnightly 2pm – 5pm Upcoming dates: Apr: 9th,23rd May: 7th,21st Jun: 4th,18th Jul: 2nd,16th,30th Aug: 13th,27th Sep: 10th,24th Oct: 8th,22nd Nov: 5th,19th Dec: 3rd,17th Southern DASSA 82 Beach Road, Christies Beach Monday monthly 9am – 12pm Upcoming dates: 29 Apr, 27 May, 24 Jun, 22 Jul 9 Aug, 16 Sep, 14 Oct, 11 Nov

S

treet art workshops are fun and creative ways for young people to learn about, and discuss their thoughts on, hepatitis C. During the last January school holidays, Hepatitis SA, in collaboration with the Australian Refugee Association (ARA), ran a two-day ‘health promotion through the arts’ program with seven young participants from diverse cultural backgrounds.

An education session was delivered at the start of each day covering topics such as the functions of the liver, the hepatitis C virus and its effect on the body, transmission, prevention, prevalence, testing, vaccination, treatment and stigma/discrimination. A C-Talk positive speaker also attended the second day to talk to the group about living with hepatitis C. The knowledge acquired through these education sessions enabled each participant to create an artwork portraying what they believed others

should understand about hepatitis C. A young Adelaide spray artist, Anthony, attended both days to guide and assist the young people in the development of their concepts, stencils and art.

Anthony talked to the group about spray and stencilling techniques, different types of street art and the benefits of creating street art in an ethical and legal manner.

At the end of the workshop, the participants explained to the group how their piece of spray art related to themes around hepatitis C. A question and answer quiz game was conducted to gain an insight into the participants newfound understanding. The results were impressive as all questions but one were answered correctly.

The group reported enjoying the workshop, with several of the participants asking if Hepatitis SA would be running another course next school holidays.  - Imogen Dayman

Northern DASSA 22 Langford Drive, Elizabeth Thursday fortnighty 10am – 12pm Upcoming dates: 4, 18 Apr; 2, 16, 30 May; 13, 27 Jun; 11, 25 Jul; 8 , 22 Aug; 5, 19 Sep; 3, 17, 31 Oct; 14, 28 Nov; 12 Dec.

Hutt Street Centre 258 Hutt Street, Adelaide Wednesday Weekly 9am-12pm _______________________ Hep C online health course 6 week course via internet, chat (text) & self-paced modules. louisa@hepvic.org.au Tel: 1800 703 003 Webcast hepatitis forum http://www.rhef.com.au/ 7 May (tentative).

Confirm closer to the date at www.rhef.com.au/ SA Sex Industry Network annual community forum Community forum to discuss SIN focus for next 12 months.

Where: SIN 276 Henley Beach Rd, 3 April (tentative) Contact SIN 8351 7626 closer to date.

Connecting Up - Monetising Mobile Webinar. (cost: $40) Tap into the power of mobile.

Http://e.mybookingmanager. com/E117172826194606 18 April, 2013 10:00am - 11:00am

?

Byron Place (New Roads Program) 61 - 67 Byron Place, Hindmarsh Wednesday weekly 9 am -12 pm

Manual Handling Training (Free for volunteers) Adelaide Hills Positive Ageing Centre 17 April 2013 9:30 am - 12:30 pm Tel: 8339 4400

Now That’s a Good Question!

Hepatitis SA telephone information workers and peer educators are asked all sorts of questions about hepatitis.

Here’s one of the interesting ones…

Q: I share injecting equipment with my relatives. We can’t give each other hep C since we have the same blood. Is that true?

A: No one has a natural immunity to hepatitis C. Even if your relative had been able to clear hepatitis C naturally, your body may not respond the same

way. Being related does not make any difference, and neither does blood type. The hepatitis C virus can infect anyone through blood to bloodstream contact, even those who have cleared the virus before. Sharing any injecting equipment with anyone exposes you to the risk of infection. 

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 11

11

18/03/2013 12:32:28 PM

My Story

H

epatitis SA peer educator Penni Moore lives well with hepatitis C.

transmission and I was careful, so I don`t know for certain how I got it.

“I’ve been hepatitis C positive for over 15 years, and I still feel relatively fine.” said Penni. “Even after such a long time, I still have a low viral load and no scarring on my liver. I don’t have many symptoms, apart from occasional aching joints, and lately, exhaustion.

“Reading about hepatitis C initially did freak me out as some of the details of the virus can sound pretty dreadful but since I felt fairly normal because I didn’t have many symptoms, I just went on with my life. I still had to adopt certain lifestyle practices, to make sure that I didn’t transmit it to anyone else.”

“I can’t have much alcohol or rage as much as I used to, because I’d feel horribly sick after that. I also feel ghastly after eating greasy and fatty foods so I just try to have a healthy diet as much as possible.”

Pre-natal test “I found out I had hepatitis C while I was in hospital for the birth of my daughter. It was picked up through a routine pre-natal blood test,” she remembered.

“My kids’ dad had hepatitis C, so I had some information about it from the local clean needle programs.

I was really surprised that I got it, as I wasn’t sick. I knew about

12

When Penni’s kids turned two, she had them tested for hepatitis C as well. “Luckily they both tested negative for the virus, which was a huge relief for me,” she said. “I would have been heart-broken if they were positive. I would have felt guilty for the rest of my life.”

Penni’s work as a peer educator at Hepatitis SA contributes to her sense of well being.

“We go out and talk to people who have hepatitis C or are at risk of getting hepatitis C,” she explained.

“I find it great to be able to do work where I can just be myself. It’s a positive, worthwhile thing to do.

Fulfilling “It’s good not to have to compromise myself. Sometimes, the job can be difficult, as sometimes people just do not listen, and do not want to accept help, but I try my best. I hope to keep doing this job, as I find it very fulfilling.”

C. Lim / Hepatitis SA

Getting on with Life

Although her health is good, Penni nonetheless keeps treatment in view. “I always wished I’d be one of those people that could get rid of it naturally,” she said.

Peni’s hepatitis C virus didn’t clear naturally but she has a “pretty diligent” doctor who gets her to investigate treatment options because she’s had hepatitis C for such a long time.

“I found that for my genotype, the treatment would last a year and I’d have a 55 per cent chance of success,” she said. Because she was afraid she might be too sick from the side-effects to continue working during treatment, Penni decided not to embark on it.

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 12

18/03/2013 12:32:29 PM

Affected by hepatitis C? However, she keeps in touch with the hepatitis C nurses through her work as a peer educator at Hepatitis SA. “They know I am genotype 4, so they always notify me of things which could be relevant to me. I was interested in a genotype 4 trial which I heard about recently.

The side-effects of treatment were an important consideration for Penni. “I simply cannot afford to give up my work. I work part-time, but I earn just enough not to be eligible for government assistance,” she explained.

“If I had to cut my hours back, my income would drop significantly.”

To Penni, everyone’s circumstance is different. “People need to weigh up the benefits of treatment versus the side-effects. You’ll find that people will arrive at different conclusions.”

“If another trial comes up with good odds of clearing the virus and not too heavy on the side-effects I’d probably go for it,” she said. In the meantime, Penni will simply go on with her life.

If you would like to know more about Hepatitis SA’s peer education program or about how to live well with hepatitis, call 1300 437 222 or email admin@ hepatitissa.asn.au. 

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

Photo © S.Allen

“At first I was concerned that I wouldn’t be able to maintain my work commitments but I heard that those trials weren’t meant to throw you around too much. I was in a bit of a dilemma but in the end, the trial didn’t proceed so I didn’t have to make that choice.”

Photo © S.Allen

Dilemma

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

- A. Haines

Tuesday, 8 January

C.Lim / Hepatitis SA

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 Hepatitis nurses for central, northern and southern Adelaide met with Hepatitis SA staff recently to share updates, identify issues in providing community based treatment services and coordinate activities. It is hoped that these meetings will occur six monthly and will improve collaboration between services and keep participants informed.

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

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 13

13

18/03/2013 12:32:30 PM

Treatment

Stay in Charge

Dealing with side effects of new Direct Acting Antivirals

W

ill said he went into the first round of treatment with a positive attitude. He even stopped alcohol to give himself the best chance of success. But still he wasn’t prepared for the side effects.

“The most surprising one was weight loss from nausea and loss of appetite,” he said. Other side effects included fatigue, rash over his shoulders and arms, and depression. Coping with the side effects during the first round of treatment was a challenge but he persevered and was rewarded with “virus undetectable” at end of the treatment period.

However, his post treatment test after six months showed the virus had returned.

“After four or five weeks where it felt like my whole world was falling apart, I finally came to terms with it and decided to fight back again,” Will recalled. “I read everything I could get my hands on

14

C. Lim / Hepatitis SA

Will, 67, was diagnosed with hepatitis C in 2003. He went through combination therapy with pegylated interferon and ribavirin in 2005. When that didn’t work, Will went onto a trial in 2008 with the new direct acting antiviral drug telaprevir, used in combination with peginterferon and ribavirin. He shares his experience in dealing with the side effects of treatment.

Photos: C.Lim / Hepatitis SA

about hepatitis C. I was determined to beat it.

“In late 2008, I went on a stage three trial of telaprevir. Telaprevir comes in tablet form, taken every eight hours with 20grams of fat to help absorption. I used peanut butter, nuts, or just something small with lots of cream on it.”

Prepared The side effects this time were even more severe than the first time, but Will was more experienced and prepared.

Will’s early side-effects were “feeling incredibly nauseous and extremely sick”. Soon after, he started to experience “anal issues, including soreness and irritable bowel movements. His whole body ached. However, he found ways of dealing with the side effects.

“I found it hard to move, so I tried to avoid it,” he said. “I would prepare myself by having a jug of water nearby, such that I wouldn’t have to get up very often.

“I also tried to eat smaller and plainer meals, as I couldn’t deal with eating a lot of solid foods. In the end I only lost 8 kilos, because I had some experience and knew that I had to try my hardest to keep eating.

“I had a rash from the back of my knees up to my back. It was constantly itchy and burning.

I found that using moisturisers helped; Sorbolene in particular was quite useful. I also tried to avoid harsh soaps, because they only made things worse. I advise people away from scratching if they can help it, because it only aggravates the condition.

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 14

18/03/2013 12:32:31 PM

Will also made use of whatever support services he could access.

“My GP and liver specialist were most helpful. They guided me through the treatment process and gave me all the relevant information,” he said. “Hepatitis SA’s support staff were really helpful when times got tough.”

Will also used Meals on Wheels, because sometimes it was too hard to cook for himself. He said this service was especially useful for people living alone.

“Domcare SA sent a cleaner once a month to help me with cleaning the house,” he said. “And my local Council also provided a service that helped me with cleaning. Not every Council does that.”

Upon the completion of his second course of treatment, Will’s test results once again showed the virus was undetectable. “I did feel a bit uncertain,” he recalled.

However, a PCR test at six months after treatment found he’d achieved a sustained response and cleared the hepatitis C virus.

FDA Telaprevir Warning

telaprevir, the odds of beating the disease are better than before.

“It is important for people with hepatitis C to weigh this up against the side effects. Not everyone will have side effects as severe as what I’d experienced.”

Will said with new drugs and improved chances of clearance, it is for most, a choice between experiencing the short-term sideeffects of treatment and clearing the virus, or experiencing the effects of the hepatitis C virus for the rest of your life.

If you are interested in participating in a trial talk to your GP or liver specialist, or call the Hepatitis SA Helpline. 

The US Food and Drug Adminstration (FDA) has updated the label on Incivek (telaprevir) to include a “Black Box” warning following reports it received of potentially fatal skin rashes in people receiving the drug.

Telaprevir is given in combination with pegylated interferon and ribarivin as treatment for hepatitis C. Skin rash is one of the side effects of this therapy.

In a Safety Announcement on 19 December 2012, the FDA said it had received reports of serious skin reactions, some of which were fatal.

Significantly, it said, some pat­ients died when they continued receiving Incivek even after developing progressive worsening rash with symptoms that affected the whole body.

(For other aspects of Will’s treatment experience, see “Treatment”, Issues 47 and 48, Hepatitis C Community News, www.issuu.com/hepccsa.)

- Alyona Haines

The Safety Announcement includes data summary, and additional information for patients and health care professionals.

It can be viewed at the FDA website: http://www.fda.gov/Drugs/DrugSafety/ ucm332731.htm. 

Rural Education

M. Spudic / Hepatitis SA

Support Services

Worthwhile “Since clearing the virus, I noticed how much things have changed in my life especially after the side effects of the treatment drugs had worn off,” he said. “I was no longer suffering depression and anxiety. I believe it was mostly hepatitis C that was responsible for my depression.

“I found my mind a lot clearer; no longer fuzzy and scattered. As the months progressed I seemed to gain more energy.

“Overall, my attitude towards people had mellowed. I noticed how angry I was during treatment.

At times I just couldn’t help it and I acted inappropriately because of my anger.

“From my experience, the treatment is definitely worthwhile.

It gives you a chance of clearing the virus. With the new drugs such as

Rural communities are disadvantaged through lack of up to date information about viral hepatitis. This can lead to increased transmission risks as well as discrimination within the community.

Hepatitis SA’s rural education visits promote awareness of accurate information about transmission, living with viral hepatitis, testing and treatment.

Rural Educator Michelle Spudic, together with hepatitis C nurse Margery Milner and John McKiernan, BBV Coordinator from the Aboriginal Health Council of SA (AHCSA), visited Port Augusta in early February to conduct a number of education sessions.

Services visited included the Aboriginal Health Service, Pika Wiya and the Port Augusta Hospital.

Michelle said the team trained approximately 15 workers at Pika Wiya about hepatitis C and other hepatides.

“I discussed issues around hepatitis C, Margery talked about treatment and

John provided information on how to apply this knowledge,” she said. ”The audience was engaged and the team received a lot of positive feedback.”

Margery and John will continue doing regular visits to Pika Wiya in the future.

At Port Augusta Hospital Michelle presented an information session to nurses, registrars, and students.

“There are still some misconceptions about viral hepatitis in the medical community,” said Michelle. “Education sessions help to make things clearer for medical practitioners.

“This session was mainly about hepatitis C transmission and treatment. The reception was positive and the event was successful overall.”

Hepatitis SA conducts similar education sessions in rural areas throughout South Australia. If you would like to have an education session to be presented in your area, please contact Hepatitis SA on 8362 8443. 

APR 2013 • HEPATITIS SA COMMUNITY NEWS •

internal_pages_59.indd 15

15

18/03/2013 12:32:32 PM

In Our Library Review

Aging and Hepatitis C: A guide

C.Lim / Hepatitis SA

Lucinda Porter, San Francisco, 2012 Call no: 79 POR 2

Know Your Rights: when using health and community services in South Australia Health and Community Services Complaints Commissioner (HCSCC), Adelaide, 2012.

Call no: 5.6 HCS 7 (Aboriginal and Torres Strait Islander version).

Generic version call no. 5.6 HCS 8

Unpolished Gem, Alice Pung, Call no: 7.5; 011; PUN How to Follow a Low Sodium Diet Heart Failure Society of America, St Paul MN, 2002 Call no: 4.1 HFS 34 Increasing Hepatitis B Vaccination in People who Inject Drugs Lisa Maher (CREIDU), Melbourne, 2012 Call no: 2.4 MAH 23

HCV treatment and the brain (HCV Advocate Newsletter)

Action for Happiness: Happiness Action Pack – Putting the science of well-being into practice

Hepatitis C Support Project, San Francisco, 2012 Call no: 1.3 HCS 9

Action for Happiness, London, 2011. Call no: 4.4 HEA 51

Depression and Anxiety: Information (translations) beyondblue, Melbourne, 2012 Call no: 4.3 BEY 26 (folder contains 12 booklets in various community languages inc.

Dari, Arabic, Chinese, Vietnamese and Italian)

Hepaitis C Support Group Handbook, Hepatitis C Support Project, Cambridge MA, 2012 Call no: 5.2 HCS 10 Also available: Hepatitis C Support Group Lessons.

Call no: 5.2 HCS 11

16

Speak Up! Responding to everyday bigotry Southern Poverty Law Centre, Alabama, 2005 Call no: 6.0 SPL 21

U

npolished Gem is the next best thing to hearing an immigrant story first hand from a friend.

Alice Pung writes with a humour and candour that makes an absorbing and easy read. This gem of a book reflects the Australian immigrant experience across cultural and age differences.

Her parents, for example, remind me of my own parents who are of an entirely different generation to Alice’s parents. Yet they reflect the same anxieties and hopes – the similarity borne of being first generation immigrants to a country with an unfamiliar language and culture.

This cross-cultural resonance can be seen on Pung’s website (alicepung.com) where people of various cultural backgrounds post messages thanking her for reflecting their own experiences: I’m Sri Lankan and when I read Unpolished Gem it was amazing, it was as if you were writing about my life  I don’t think I’ve ever felt such a connection with a book.

Thanks so much for writing (and living? Does that even make sense?)

‘Unpolished Gem’.

‘Unpolished Gem’ reminds me of many people of different backgrounds – it’s universal, but at the same time so personal.

I’ve just finished reading Unpolished Gem and like everyone else here, really loved it. I am Malaysian Chinese and was amazed at the similarities of culture and language that are retained wherever Chinese migrants settle.

I loved Unpolished Gem, I can truly relate to your experience... although I have no Asian background…

If you work with new immigrants from Asia and Africa, or simply want to understand your new fellow Australians more, Unpolished Gem is one of the best places to start. It is available at the Hepatitis SA library. Library membership is free.

For more information: 1300 437 222.  - C. Lim

• HEPATITIS SA COMMUNITY NEWS • APR 2013

internal_pages_59.indd 16

18/03/2013 12:32:33 PM

WIN!

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@hepsa.asn.au

STAFF

The best contribution pr inted in each issue of the Hepatitis SA Comm unity News will receive a $25 shopping vouche r.

Write to us about anythi ng to do with the magazine, Hepatitis SA , your personal experienc es living with hepatitis, or living well ideas.

Email us at editor@hepa titissa.asn.au

About the Cover

Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Acting Information & Support Coordinator: Fred Robertson Information and Support Line Volunteers: Debra Fred Janette Karan Louise Michele Will

Front cover art by Anthony David, photography by Dean Harris.

Back cover art by Eric Guerkin, Shane Sumner, Tony Lovegrove and Anthony David. Photography by Dean Harris.

See story More than Art on page 8.

Education Coordinator: Tess Opie

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

Educators: Nicole Taylor Michelle Spudic (Rural) Imogen Dayman Shannon Wright

Issue 59 editorial and production team: Alyona Haines, Bryan Soh-Lim, Cecilia Lim, Joy Sims, Rose Magdalene

Hepatitis B Coordinator Elaine Lloyd Peer Education Coordinator: Maggie McCabe Assistant Peer Education Coordinator: Bill Gaston

1 News

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

Contents

Mark Will

Information and Resources Coordinator: Cecilia Lim Information and Resources Volunteers: Alyona Amanda Dayna Phil Philip Publications Officer: James Morrison Information and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Project Officer: Alyona Haines Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos

2

The Silent Pandemic

3

New drugs approved for PBS

4

Quizzical Response

5

Meet Emma and Trish

6

First Step

8

More than Art

12

Getting on with Life

14

Stay in Charge

15

Rural Education

16

In Our Library

insert photo from stories here

Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Gillian Bridgen Carol Holly

Catherine Ferguson Jeff Stewart

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

(08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline 1300 437 222 (cost ofa 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 Peak HIV/AIDS body in South Australia.

(08) 8334 1611 www.acsa.org.au beyondblue Mental health information line 1300 224 636 www.beyondlbue.org.au

insert photo from stories here

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

1300 131 340

insert photo from stories here

Vice-Chairperson: Lisa Carter Secretary: Lindsay Krassnitzer

Useful Services & Contacts

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 Menatl 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.

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

13 14 65 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

SANE Australia National helpline free call number.

Available 9am to 5pm, Mon to Fri. 1800 187 263 www.sane.org SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers.

(08) 8351 7626 SAVIVE Clean needle program and peerbased support information and education for people who use drugs.

(08) 8334 1699 The Second Storey 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 & assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for appointment.

Community Access & Services SA (Formerly Vietnamese Community in Australia SA Chapter) Alcohol and drug education; clean needle program for the Vietnamese and other communities.

Central & North:

(08) 8447 8821

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

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

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.

Ella Grace is beautiful

coverpages_59.indd 2

21/03/2013 11:35:10 PM

Community News

#59 • April 2013

More than Art

Hep B Survey • Quizzical Response • Side Effects Penni’s Story • The Silent Pandemic

coverpages_59.indd 1

FREE! Please take one

18/03/2013 12:06:19 PM