#67 HepSA Community News

Community News

#67 • July 2015

PBS Listings Imminent?

Living Well with Hepatitis • Quiz Night

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FREE! Please take one

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

Street Address: 3 Hackney Road, Hackney Postal Address: PO Box 782 Kent Town SA 5071 Phone:

Fax:

(08) 8362 8443 1300 437 222 (08) 8362 8559

Online: www.hepsa.asn.au admin@hepatitissa.asn.au

21 YEARS!

This year, Hepatitis SA ( formerly the Hepatitis C Council of SA) will be celebrating its 21st anniversar y. Please ge t in touch with us with your memories of the organi sation’s early years, or with any ideas of what you’d like to see us do to celeb rate our first two decades.

Email us at editor@he patitissa.asn.au About the Cover: The newly decorated eBox and associated art: see p12.

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

Editor: James Morrison Non-staff Contributor: Danella Smith

Contents

1

PBS Developments

HEPATITIS SA BOARD

2

Sing It Out!

Chair Arieta Papadelos

4

Treatment Champion

Vice Chair Bill Gaston Secretary Lindsay Krassnitzer Treasurer Howard Jillings Ordinary Members Catherine Ferguson Ratan Gazmere Kristen Hicks Nicci Parkin Kerry Paterson (EO) Judith Peppard Jeff Stewart

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6

Drug Import Warning

7

Living Well 2

11 News 12

Quiz Night

15

What’s On

16

In Our Library

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.

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

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

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.

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

Call Hepatitis SA on 1300 437 222 for a referral. beyondblue 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 Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8447 8821

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

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

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

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

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

Youth Health Service Free, confidential health service for youth aged 12 to 25.

(08) 8406 1600

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

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

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

(08) 8245 8100

Assistance hotline: 1300 729 202

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

Central & North

headspace Mental health issues are common.

Find information, support and help at your lcoal headspace centre

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

1800 650 890 www.headspace.org.au

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 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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daclatasvir News

sofosbuvir

ledispasvir New HCV Treatments paritaprevirto PBS Listing Closer

ritonavir PBAC and TGA make positive recommendations ombitasvir

T

dasabuvir

he Pharmaceutical Benefits Advisory Committee (PBAC) has recommended three new drugs for treatment of hepatitis C. This was the outcome of its meeting in March. The three drugs are daclatasvir, sofosbuvir, and the combination of ledispasvir and sofosbuvir.

treated in the near future is around 62,000.

The Committee advised the Health Minister of the “high clinical need for all oral interferon-free treatments of [chronic hepatitis C] to be made available on the PBS”.

daclatasvir sofosbuvir

Visit http://bit.ly/1Gyd86S to read the PBAC’s positive recommendation document.

ledispasvir

In its recommendation, the PBAC said it was “appropriate for the new all-oral treatment to be listed in the General Schedule, rather than Section 100 Highly Specialised Drug Program, to facilitate the longerterm objectives for access to treatment, increased treatment rates and better outcomes with a view to treat all patients with [chronic hepatitis C] over time”.

paritaprevir

The PBAC will be considering additional new hepatitis C treatments at its meeting in July.

These include:

ritonavir

• Paritaprevir with ritonavir, ombitasvir and dasabuvir (commercial name: Viekira Pak), for the treatment of hepatitis C, genotype 1

ombitasvir dasabuvir

• Paritaprevir with ritonavir, ombitasvir, dasabuvir and ribavirin (commercial name: Viekira Pak-RBV) for the treatment of hepatitis C, genotype 1

daclatasvir

The PBAC also said it did not accept that the treatments were costeffective at the price proposed by the sponsors.

It estimated the number of people who could be

sofosbuvir

ledispasvir

In addition, the Therapeutic Goods

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Administration (TGA) has approved the ledipasvir/ sofosbuvir combination (with the commercial name ‘Harvoni’) for use in treating hepatitis C. The Australian Pharmacy Guild daily newsletter, Pharmacy Daily, said the approval was confirmed by Harvoni’s manufacturer, Gilead Sciences.

TGA approval is required before a drug can be listed with the Pharmaceutical Benefits Scheme (PBS).

Hepatitis SA has been advocating for these new treatments to be made available on the PBS, and keenly awaits an announcement from the Federal Government as to when this will happen.

Information about the approvals process, the treatments and how to use the PBS form (including links) is located on the Hepatitis Australia website at www. hepatitisaustralia.com/ newtreatments.

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Working with Community

Sing It Out! One way to work with the African community

G

ot a health message for the African community? Try putting it to music!

This was just one of many tips and ideas from Nora Darius, Lawuo Peewee and Constance Jones from the African Women’s Federation of SA (AWFOSA).

Nora recalled an extremely successful campaign she’d worked with where health messages were

put to simple tunes and played out to villagers.

“We recorded the song and played it over the loud speaker as we drove into the village.

It was catchy, easy for them to understand and remember,” she said.

Other suggestions include using lots of video clips and pictures, and being aware of your audience’s backgrounds.

Speaking to Hepatitis SA

staff about working with African communities, the three women said because of different education levels and exposure to new ideas, different age groups often hold different attitudes.

“Sometimes it works better to split your audience by age and work with them separately in smaller groups,” said Constance. “Other times you may have to split them up by gender.”

This is especially true, they said, if you are going to talk about sexual activities. “Older people don’t think such talk is for young people and they themselves are not young enough to talk about such activities,” said Nora.

“Some may be confused or offended. And some, even young people, don’t feel comfortable talking about such things in the presence of the opposite sex.”

When discussing blood-borne virus

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CNP Hepatitis SA

Monday - Friday 9am - 5pm transmission risks that particularly affect African communities, such as circumcision (both male and female), scarring and initiation ceremonies, they said it is important to remember that you are dealing with traditional practices and beliefs.

“You could be talking to someone whose father is the traditional healer in the village,” said Constance. “It’s hard for them to change their belief or go against what they’ve been taught and what their families have been practising.”

They pointed out that it is important to understand that Africans are diverse and they don’t all have the same practices. There are also differences between those who come from urban and rural areas.

Another challenge is talking about drug use.

Because the community is small, the stigma is greater.

“Most tend to do it in isolation,” said Nora. “For the same reason, they prefer to use vending machines rather than CNPs. Or they improvise.”

Other challenges include common myths, such as the belief that there is no HIV, hepatitis C or hepatitis B in Australia, and so there’s no need for caution.

Full range of syringes and needles. Water and filters also available for sale.

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

1300 437 222

“Some people believe the Australian health system is so good, they are safe,” said Constance. “Others think because they were tested before they came, they are OK forever.”

Despite the challenges, Nora, Lawuo and Constance said people understand that health education workers have sincere intentions. So long as they and their community are treated with openness and respect, they will respond accordingly.

Cecilia Lim

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Working with Community Treatment Story

Treatment Champion Aboriginal health educator Damien House

A

boriginal health educator Damien House took some time out to talk with the Hepatitis SA Community News when he visited Adelaide in March to present at the 2015 HeplinkSA Forum.

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Damien House is a treatment champion.

The Aboriginal Health Educator and Hepatitis Peer Educator believes in encouraging people from his community to go for hepatitis C treatment as soon as possible.

Damien—who was originally from South Australia but grew up in Sydney—was removed from living with his Aboriginal family. He said his advocacy for hepatitis C treatment grew out of his personal experience.

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BY TRACEY HUTTON

For more information on getting access to treatment, contact: Nunkuwarrin Yunti on 8406 1600 “I was diagnosed around the age of 28 after my mother died from liver disease and I decided to get myself tested, and was HCV-positive,” he said.

“I eventually went for treatment and cleared.”

He kept a diary to help himself through treatment.

“I knew I had to complete the treatment. I didn’t want to let myself down. I didn’t want to die young.”

Damien discovered his Aboriginal heritage when he was 13. “That explained so many things… like why my brother and sister were white and I was this colour,” he said.

After his successful treatment in 2010, Damien decided he wanted to help others in his community beat hepatitis C. Damien said Aboriginal culture emphasises community and country, so he looks for ways to support his clients in that.

“I had received a lot of support from the nurse during my treatment and I wanted to offer the same support to other people undergoing hep C treatment,” he said. “The model of care I use to support my clients is the same model I received with my treatment.

Viral Hepatitis Nurses on • 0423 782 415 (Central) • 0413 285 476 (North) • 0466 777 873 (South) “So far I have supported 13 people through treatment and all have successfully completed their treatment and cleared hep C.” He said that when health workers discuss hepatitis C treatment with people, it was often the prospect of liver cancer and cirrhosis, and the stigma and shame of hepatitis C that was highlighted.

“When I started treatment, what they didn’t tell me was that at the end of the 12 months of caring for myself I would learn to love myself again,” he said. “During my treatment, I quit smoking, lost weight and met some amazing people.

“If they had told me this before I would have done treatment earlier.”

Since completing treatment, Damien has gone on to university, completed a degree and now works with the Sydney Local Health District in a job he is passionate about.

“So when I work with a client, I look at why this person wants to undertake

treatment and help them to focus on that—on life after hep C.” He believes strongly that people, especially from his community, must be encouraged to go for treatment.

“It is important to keep people engaged, or they leave and don’t return for follow up.

“If you tell people, ‘your liver is fine, wait for new treatments’, many will take that to mean they have a lot of time, and there’s no need to change their lifestyles, or return for monitoring,” he said.

“I cannot emphasise strongly enough—no matter the state of the liver, the right time for treatment is right now.

Now is the time to treat.

“My life experience is a shared experience. Peer support is crucial so I incorporate my lived experiences to help others in their journey.”

Cecilia Lim

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Treatment Warning

A Warning on Drug Imports Eager self-medicators risk liver health

H

epatitis Australia and other hepatitis organisations have been made aware that some people living with hepatitis C are seeking to import medicines not yet available under the Pharmaceutical Benefits Scheme in Australia (see p1 for more information) to treat their hepatitis C infection. We understand the frustrations caused by the current lack of availability of new hepatitis C treatment drugs in Australia and we are among

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a number of organisations working hard to address it.

Anyone considering buying new hepatitis C treatment drugs from overseas should be aware of the following: Treatment of hepatitis C infection • Sofosbuvir is never taken on its own to treat hepatitis C. • Different combinations of medicines are needed depending on the specific genotype (strain)

of the hepatitis C virus.

• If the wrong combination of treatment is taken there will be high rates of treatment failure and it may make successful treatment more difficult for you in the future.

• If one hepatitis C treatment drug is purchased from overseas there is no guarantee that Australian hepatitis C treatment providers will be able to prescribe (continued on p14)

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Living Well

Living Well with Hepatitis Chronic Disease Self-Management, part 2

I

n this second article in our series on Chronic Disease Self-Management, Rose Magdalene looks at a more in-depth exercise to assist with coming to terms with the affects of hepatitis on your daily life.

As introduced in our previous article in Hepatitis SA Community News issue 66 (available online at issuu.com/ hepccsa/docs/hcn66), Chronic Disease Self Management (CDSM) is an approach that is

being used to help people manage diseases such as diabetes, autoimmune conditions and other chronic illnesses and can also be helpful for people with hepatitis when they experience periods of illness or fatigue.

CDSM is having positive impacts not just on longterm health outcomes but on the quality of people’s daily lives.

The approach discussed in this article series is Patricia Fennell’s Four Phase Model

as described in her Chronic Illness Workbook. Fennell says that “completing the exercises [in the Chronic Illness Workbook] throughout your journey helps you achieve your goal to validate the realities of your experiences, stabilize and structure your life, develop meaning for your experiences, and ultimately enjoy the whole, complete life that you deserve”.

When you become ill, changes in your ability to live your life in the way

Photo CC John/Puzzler4879 [flickr.com/photos/puzzler4879] WINTER 2015 • HEPATITIS SA COMMUNITY NEWS 67 •

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Living Well

(continued from p7) you did when you were well can be disruptive and upsetting, both for you and the people around you. Being unable to meet your usual responsibilities such as work, childcare, household chores or social obligations can have many negative effects.

For you there may be a sense of failure or disappointment, especially if your self-worth or identity is caught up in the responsibilities you’re struggling to meet. For instance, perhaps you pride yourself on being an excellent worker with lots of initiative, a very energetic and involved parent, or a caring friend, but the effects of your illness now mean these things are difficult for you.

You may also feel angry or bitter about the loss of your old life.

Thinking about the impact of your illness on your daily life, your sense of self and your relationships 8

• face and express feelings about your illness • acknowledge and accept the loss you have all suffered • come to a new understanding about who is able to fulfil responsibilities now that you’re not well.

Developing a new, realistic routine for yourself is also very important in terms of your physical and mental health. Because chronic illnesses tend to be unpredictable with a cycle of good periods and bad periods, many people push themselves too hard during their bad periods.

This can lead to relapses as well as negative emotions.

Setting the bar at a level you are able to achieve almost all of the time with some contingency plans for things you would like to do when you are (continued over page)

Photo CC www.sqfp.info [flickr.com/photos/shoshot]

The people around you can also be deeply affected.

They may be worried about your prognosis, saddened by the loss of your former relationship, or stressed and angry about the disruption to their normal routine, especially when this involves them taking on some extra responsibilities.

with others can be helpful in continuing to have a worthwhile life despite your illness. However painful the process may be, facing the effects of your illness on all areas of your life in a systematic way can be an enormous relief.

Some benefits include the opportunity for you and the people around you to:

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Living Well

Exercise: Activity Analysis Record your daily activities

Time of day

Day and Date

List of activities

Total time per item

Morning activities (includes washing, dressing, bed-making, breakfast, making lunches, getting kids ready, walking pets, etc.)

Morning at work/home (itemise typical activities, including weekend jobs and activities)

Noon/lunch time (includes going out, doing errands, etc.)

Afternoon at work/home

Photo CC www.sqfp.info [flickr.com/photos/shoshot]

Dinnertime (preparation, serving, clean-up)

Evening

HOW MUCH OF MY ENERGY DID I USE TODAY?

 Colour in the boxes Adapted from The Chronic Illness Workbook, Patricia Fennell WINTER 2015 • HEPATITIS SA COMMUNITY NEWS 67 •

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Living Well Practical help (continued from p8) feeling well is a much more sustainable approach.

An activity analysis will allow you to see how much your capacity has changed and help you to build a new daily routine. You will need 8 copies of the Activity Analysis exercise on page 9 of this magazine (contact Hepatitis SA if you would like printed copies of this exercise).

First, complete the exercise by remembering what you typically did on a day when you were well.

Then label the remaining 7 copies with the days of the week and track what you are able to do each day.

Do your best to capture some information about what you are able to do but don’t worry too much if you can’t write everything down for the whole week. Perhaps complete a morning one day and an afternoon on another, or a few weekdays and the weekend.

In our next article, we’ll look at using the results of your activity analysis to set up a new daily and weekly routine. In particular, we’ll focus on creating a routine that leaves you with some energy left over to have a balanced life that includes 10

doing some of the things that you enjoy and find meaningful.

If you would like to continue these exercises before our next issue The Chronic Illness Workbook is available for members to borrow from our library.

Thinking about the effects of your illness can be difficult and you may want to consider talking some of these issues over with a friend, support worker or counsellor.

Talk to someone who shares your experience - come to one of our Calming the C support groups (see page 15 for locations and dates).

Get more information and support: call the Hepatitis SA Helpline on 1300 437 222.

Access free counselling: call the MOSAIC Blood-Borne Viruses Support Service on 1300 364 277.

Make sure you have a supportive doctor: call Hepatitis SA on 8362 8443 or 1300 437 222 for the contact details of a Hepatitis-Friendly GP.

Printed Resources Resources available from Hepatitis SA • Hepatitis C Guide to Healthy Living • Living with Advanced Liver Disease

Available to borrow from our library • The Chronic Illness Workbook, Patricia Fennell • The Chronic Illness Workbook: the exercises, Patricia Fennell

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Hepatitis Cruise

This is how far one American pharmaceutical executive was willing to go to secure inexpensive versions of Gilead’s hepatitis C drug Sovaldi, unavailable to US consumers under federal drug import and patent laws.

His plan: Dock a cruise ship flying an Indian flag off the coast of Miami. Stock the ship with versions of Sovaldi sold in India for US$83,000 less than the American retail price for 12 weeks of treatment. Ferry US patients to the boat.

Then send them home with the potentially lifesaving medicines at a huge discount.

The only wrinkle in his plan wasn’t the absurdity of a pharmacy benefit manager manning and operating a cruise ship full of drugs from India.

The problem, after doing some quick research into the idea, was that it would probably violate U.S. drug re-importation laws that limit the value of drugs brought into the country to US$1,500—the price of one and a half Sovaldi tablets in the US, said Steve Miller, chief medical officer at Express Scripts, who came up with the idea.

“I was trying to be as creative as possible,” Miller said in an interview.

“This is what the market is demanding, this level

of creativity that almost borders on the ridiculous.”

Miller quickly dropped the drug boat scheme, but he says he is still searching for creative ways to save money on the US$84,000 Sovaldi, which Express Scripts stopped covering for many patients this year because of the cost.

He isn’t alone. A cottage industry of drug distributors, medical tourism agencies and consultants is emerging to offer patients in the US and other developed countries cheap copies of Sovaldi from countries where it is sold for 1% of the American price. (See p6 for a warning on this growing trade in Australia.)

Read more at Bloomberg Business, http://bloom. bg/1KIGsZZ.

Antihistamines vs HCV

In search of a more costeffective way to defeat Hepatitis C, researchers at the US National Institutes of Health in Bethesda, Maryland, screened 3,800 drugs already FDAapproved that might have an antiviral activity against hepatitis C infection.

As published in the 8 April 2015 edition of the journal Science Translational Medicine, human liver cells

were grafted into mice to test the allergy drug chlorcyclizine HCl. An over-the-counter antihistamine, chlorcyclizine HCl costs about US$17 for 30 pills under the brand name Ahist. The research team found that chlorcyclizine HCl was a potent inhibitor of Hepatitis C infection in human liver cancer cells and human liver cells.

Although traditionally used to treat hayfever, chlorcyclizine HCl also appears to inhibit an early stage of Hepatitis C, most likely by targeting viral entry into host cells.

In addition, chlorcyclizine HCl was found to be synergistic with other antiviral drugs used for hepatitis C, such as ribavirin, interferon, telaprevir, boceprevir, sofosbuvir and daclatasvir (for more on these treatments, see p1).

The authors of the study make an interesting case for further investigation into chlorcyclizine HCl as part of hepatitis C treatment. They claim this allergy drug (that is already FDA-approved and has a favorable safety profile) could provide a more affordable alternative to the costly Hepatitis C treatments now offered.

Read more at Hepatitis Central, http://bit. ly/1dfE3aW.

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Name 3 Countries with no ‘A’ in their name And other puzzlers from the 2015 Quiz Night

O

n Saturday 23 May, Hepatitis SA hosted a fundraising quiz night with more than 115 participants, raising a grand total of $3476.45.

Held at the Unley Community Centre, the event included a number of quiz rounds, music rounds, interactive games (including a hard-fought battle for a bottle of Cointreau), silent auction items, raffles, and prizes.

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Monies raised from the quiz night will fund our World Hepatitis Day event on Friday 24 July at Victoria Square.

The success of the event was largely attributed to generous donations from a number of local Adelaide businesses, including an overnight stay for two people plus breakfast at Mount Lofty House; a handmade pendant by local contemporary

jeweller Sarah Rothe; ceramic art by local ceramic designer Gus Clutterbuck; and gift baskets from Etienne, Robern Menz, Ditters and Beerenberg Farm.

We would like to thank everyone who attended the night, and all of the contributors. Your support is greatly appreciated!

Shannon Educator

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Fundraising Hepatitis SA would like to thank the following organisations: Mount Lofty House Etienne, a world of beautiful objects Sarah Rothe Jewellery & Design Beerenberg Farm Robern Menz Fruchocs Ditters (Unley) Burnside Village Pharmacy Joles Candles & Gifts Chonet Humphries at OV Personalised Hair Studio and GO2JO Fitness The Queen’s Head Mayflower Restaurant and Bar, Mayfair Hotel

Bakers Delight (St. Peters) Feast! Fine Foods (Unley) Palace Nova Cinemas Maggie Beer’s Farm Shop La Bomba Productions Schweppes Australia Target (Unley) General Trader (City Cross Arcade) Kmart (Rundle Mall) Bupa Private Health Insurance T2 Tea

Kiehl’s

Ultra Tune Auto Service Centre (Unley)

Danca Brazil

Take Heed Design

Hepatitis SA would like to thank the following individuals: Bevan Ferguson

Katarina Spudic

Bryan Soh-Lim

Lisa Carter

Claire Hose

Lola Aviles

Daniel Grant

Megan Wright

Gail Wright

Michelle Spudic

James Morrison

Nicole Taylor

Jane Scarborough

Rose Magdalene

Jo Sloan

Tess Opie

Justin France

Todd Curgenven

Kam Richter WINTER 2015 • HEPATITIS SA COMMUNITY NEWS 67 •

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News

Hepatitis SA will be celebrating

WORLD HEPATITIS DAY 2015

at Victoria Square, Adelaide (Southern end, near the Hilton Hotel) from 11am–2pm on Friday, 24 July, 2015.

Come and join us!

For more info on the planned events, call Jen on 8362 8443.

(continued from p6) the other drugs that you need to take with it to treat your hepatitis C infection.

• Treatment regimens also vary depending upon personal factors such as how someone has previously responded to treatment, whether they have other medical conditions, and how severely their liver has been damaged by the hepatitis C virus.

• Specific advice about appropriate hepatitis C treatments for your own circumstances can be obtained from a healthcare professional with substantial experience in prescribing medicines for the treatment of hepatitis C, for example a hepatologist (liver specialist) or infectious diseases specialist. Most GPs do not prescribe hepatitis C medicines because special training is required.

Buying medication over the internet

• Quality checks may be 14

• Fake medicines are often packaged to look like a real medicine.

• There are also specific legal requirements which you need to follow.

• The first thing to do is to consult a healthcare professional with substantial experience in prescribing medicines for the treatment of hepatitis C. Remember, most GPs do not prescribe hepatitis C medicines as special training is required.

Further information on buying medicines over the internet can be obtained from: https://www.tga.gov.au/ community-ga/buyingmedicines-and-medicaldevices-over-internet and: https://www.tga.gov.au/ counterfeit-medicinesand-devices For further information, please contact your doctor or call the Hepatitis SA Helpline on 1300 437 222.

Photo CC Mike Cogh

• It is essential that you are very careful if considering purchasing any medicine over the internet, in particular from a supplier located overseas.

lacking and you may end up with tablets which contain dangerous ingredients or an ineffective medicine (including doses of the drug too small to be effective).

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What’s On?

Hepatitis C peer educators are also available to provide information and support to clients at the following services: Warinilla Outpatients Hepatitis C Treatment Clinic 92 Osmond Tce, Norwood Tuesdays monthly 2–4pm Upcoming dates: Ring Lisa on 8362 8443 for details DASSA Southern Service 82 Beach Rd, Christies Beach Monday monthly 10am–1pm Upcoming dates: Ring Lisa on 8362 8443 for details DASSA Northern Service 22 Langford Dr, Elizabeth Thursday fortnightly 10am –12pm Upcoming dates: Ring Lisa on 8362 8443 for details Hutt Street Centre 258 Hutt St, Adelaide Wednesday weekly 10am–12.30pm WestCare Centre 17 Millers Court (off Wright St), Adelaide Wednesday weekly 10.30am–12.30pm WINTER 2015 • HEPATITIS SA COMMUNITY NEWS 67 •

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In Our Library

More resources on symptoms & how to deal with them There are many symptoms that can occur with liver disease (and many side effects associated with their treatments): itchy skin, bloating, sleep disorders, brain fog, stress and depression to name a few. It’s a lot to cope with - but there are some really useful and effective resources available to help deal with it all. Here’s a sample of what we have available in our library.....

Itchy skin: Pruritis Mayo Clinic, Arizona, 2014 Details of a range of medications, natural therapies and strategies to help alleviate this condition.

Healthy Eating and Depression Mental Health Foundation, London, 2007 Advice and evidence to encourage a more healthy diet for better mental health.

Hepatic Encephalopathy (HE) British Liver Trust, London, 2014 HE affects the body and the mind in many ways: this comprehensive booklet contains information about recognising the symptoms and ways to deal with them Fatigue Hepatitis SA, Adelaide, 2012 Information about the causes and management of tiredness and lack of energy.

No Added Salt Diet Gastroenterology Society of Australia, Sydney, 2012 Simple but effective guidelines and chart to assist in supporting liver health through dietary changes

All resources are available for loan. Contact us for more information. Don’t forget that most of our resources are also available free online: for more details, go to our library catalogue at hepatitissa.asn.au/library.

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

Street Address: 3 Hackney Road, Hackney Postal Address: PO Box 782 Kent Town SA 5071 Phone:

Fax:

(08) 8362 8443 1300 437 222 (08) 8362 8559

Online: www.hepsa.asn.au admin@hepatitissa.asn.au

21 YEARS!

This year, Hepatitis SA ( formerly the Hepatitis C Council of SA) will be celebrating its 21st anniversar y. Please ge t in touch with us with your memories of the organi sation’s early years, or with any ideas of what you’d like to see us do to celeb rate our first two decades.

Email us at editor@he patitissa.asn.au About the Cover: The newly decorated eBox and associated art: see p12.

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

Editor: James Morrison Non-staff Contributor: Danella Smith

Contents

1

PBS Developments

HEPATITIS SA BOARD

2

Sing It Out!

Chair Arieta Papadelos

4

Treatment Champion

Vice Chair Bill Gaston Secretary Lindsay Krassnitzer Treasurer Howard Jillings Ordinary Members Catherine Ferguson Ratan Gazmere Kristen Hicks Nicci Parkin Kerry Paterson (EO) Judith Peppard Jeff Stewart

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6

Drug Import Warning

7

Living Well 2

11 News 12

Quiz Night

15

What’s On

16

In Our Library

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.

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

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

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.

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

Call Hepatitis SA on 1300 437 222 for a referral. beyondblue 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 Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8447 8821

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

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

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

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

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

Youth Health Service Free, confidential health service for youth aged 12 to 25.

(08) 8406 1600

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

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

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

(08) 8245 8100

Assistance hotline: 1300 729 202

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

Central & North

headspace Mental health issues are common.

Find information, support and help at your lcoal headspace centre

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

1800 650 890 www.headspace.org.au

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 8362 8443 or drop us a line at admin@hepatitissa.asn.au.

We rely on volunteers for many of our vital services.

12/06/2015 9:55:03 AM

Community News

#67 • July 2015

PBS Listings Imminent?

Living Well with Hepatitis • Quiz Night

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FREE! Please take one

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