Hep Review ED86

HEP REVIEW DECEMBER 2014 - MARCH 2015 edition 86

EQUAL TREATMENT ACCESS

Our campaign to make sure YOU can access new treatments

7 LIVER-LOVING TIPS FOR EATING OUT THEY SAY / BUT THEY SAY For and against NSP in prison DRUG POLICY REFORM Prejudice based practice

• Australia and the liver danger zone Horrorscopes • Recipes • Crossword hep.org.au / HEP REVIEW / 1

HEP REVIEW Editor/design/production Bruce Cherry Editorial committee Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Jeffrey Wegener Rhea Shortus David Pieper Contributers Adrian Rigg Hep Review advisors Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Prof Geoff McCaughan, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak Proofreading/subediting Wendy Beecroft Samantha Edmonds Adrian Rigg Cindy Tucker Contact tel. 02 9332 1853 fax 02 9332 1730 email: hepreview@hep.org.au mail: Hep Review PO Box 432, Darlinghurst NSW 1300 office: Level 4, 414 Elizabeth St, Surry Hills, Sydney Cover image by Exposition by RAF expositionbyraf.com

Hepatitis Infoline 1800 803 990 2 / HEP REVIEW /

© 2014 Hep Review ISSN 1440 – 7884 is published every four months by Hepatitis NSW (HNSW) Level 4, 414 Elizabeth St, Surry Hills, NSW, 2010. HNSW is an independent communitybased, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health.

Hep Review is mailed free to HNSW members – membership is free for people living with hep C in NSW. We accept contribution of articles about medical and personal aspects of hep C or hep B. Contributions to Hep Review are subject to editing for consistency and accuracy. Contributors should supply their contact details and whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to images, graphics or cartoons.

For reprint enquiries email hepreview@hep.org.au Although Hep Review takes great care to ensure the accuracy of all the information it presents, Hep Review staff and volunteers, HNSW, or the organisations and people who supply us with information cannot be held responsible for any damages, direct or consequential, that arise from use of the material or due to errors contained herein.

The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Information, resources and advertising in Hep Review do not constitute endorsement or recommendation of any medical treatment or product. HNSW recommends that all treatments or products be discussed thoroughly and openly with a qualified and fully HCV-informed medical practitioner.

A model, photographer, or author’s hep C or hep B status should not be assumed based on their appearance in Hep Review, association with HNSW or contributions to this magazine.

Hepatitis NSW would like to acknowledge and show respect for the Gadigal people of Eora nation as the traditional custodians of the land on which Hep Review is published.

We’d also like to extend our acknowledgement and respect to all Aboriginal nations in NSW and across Australia.

HEP REVIEW

Features 7

16

24

Playing the waiting game

Drug Policy Reform

They say / But they say

Video brings the personal side to the campaign for Equal Treatment Access

Adrian Rigg looks at the WHO’s recommendations for fixing a broken system

A mix and match of the arguments for and against providing NSP in prison

NSP

Regulars 4 Letters 5 Editorial 14 Local news 15 World news 26 Liver loving & eating out 34 Liver loving - recipe Discover research into viral hepatitis 38 39 Research recruitment 42 Horrorscope 43 Crossword 44 Clinic listing 49 Reader survey 53 The B word - hep B 54 Hello Hepatitis Infoline

Extras Liver Health Report Living in Australia’s liver danger zone In memory Helen McNeill

My story 6

Maria 12 shares her story of a life-changing treatment trial

22

Annie 23 shares what she learnt from an ill-informed doctor on a scubadiving holiday

Opinion 40 Carla Treloar - hepatitis and the bigger picture

Simon 31 shares his story from prison – an extract from Stories from the Other Side

Our cover features Jenny from Western Sydney.

Jenny volunteered to be part of Hepatitis NSW’s Photocall Project - see page 22 hep.org.au / HEP REVIEW / 3

DECEMBER 2014 edition 86

Contents

CONNECT

INBOX Dear Hep Review, after reading this edition (Ed. 84) I visited the prison medical clinic and had my bloods done to get the ball rolling in doing the interferon program. So thank you!

E.J Good luck, E. J - don’t forget you can call the Hepatitis Infoline (#3 on common calls list) if you want to talk to someone while you’re on treatment. - Ed. Dear Hep Review, my neighbour has had hep C for a decade now. In the beginning he refused to acknowledge the disease’s existence to the detriment of his health. I happened to come across a recent copy of Hep Review while at the chemist and gave it to him.

He’s now considering seeking vital help. About time.

L.L

before subscribing

Dear L. L - thanks for your letter! Seeking help for hep C can be hard for anyone – but it’s great to hear that your neighbour now feels more comfortable to do so and that you’ve helped him with that. - Ed. Dear Hep Review, after being involved with with both Taree and Port Macquarie hep C clinics and considering my treatment options, I finally had a fibroscan done at Newcastle and was over the moon about a 6.3 result.

I have now deferred ribavirin and interferon and am looking forward to the new drugs that, with your people’s parliamentary support, will become available soon.

Thanks to all of you. Sincere regards, Phillip Osbourne Dear Phillip - that’s great to hear! And we’re also hoping that the new treatments will soon be available - check out the story on page 7. - Ed Write to us at: Hep Review, Hepatitis NSW PO Box 432, Darlinghurst 2010 or email hepreview@hep.org.au

22 years of stories.

Share yours with us.

Hep Review magazine is a lifeline for many people, linking them to news, information, views and stories.

We want to hear from you about your story together we’ll share it with our community. hepreview@hep.org.au 4 / HEP REVIEW /

after subscribing

Hep Review is the most widely read liver health magazine in New South Wales

HEP REVIEW Get your subscription today 1800 803 990

editorial

editorial bruce cherry

W

ELCOME to a new-look Hep Review. Same informative articles, treatment news, research updates and personal stories – plus a few new surprises. We hope you like it!

This has been a big year for people living with hep C worldwide.

With the advent and commercial release of better direct-acting antivirals, the way that people are thinking and talking about hep C is changing.

When you consider how long interferon and ribavirin were the only players on the treatment field, the research and development of new treatment options for people living with hep C is moving at what seems like lightning speed. Of course, funding and approval of these ...the Australian new drugs by the Australian healthcare healthcare system system moves less like lightning and moves less like more like the muscles on a poker lightning and player’s face – slowly and inscrutably.

more like the muscles on a poker player’s face – slowly and inscrutably.

In terms of the new treatments, we have the latest news on the campaign to ensure Equal Treatment Access and the videos that will be coming soon to a YouTube near you.

Of course, thinking about treatment is only one part of living with hep C. The broader context of the part that the law plays in people’s lives, especially the lives of people who inject drugs, is tackled by writer Adrian Rigg. He wonders who the hell knows what is going on with drug policy reform across the globe.

You’ll also find some new features – check out the HR crossword on page 43 and find out how to fold your own cup on page 34.

I’d also like to thank Paul Harvey - outgoing Hep Review editor of 20 years standing. Paul has steered Hep Review from its humble newsletter beginnings to a distribution of 16, 000 glossy magazines across NSW and the world. Paul remains Information & Resources Co-ordinator at Hepatitis NSW. Thanks Paul for your leadership, passion and care for our communities.

Have a great end of 2014 and beginning of 2015.

Take care of one another.

Unless someone like you cares a whole awful lot, nothing is going to get better.

It’s not.

Dr. Seuss

Bruce Cherry Editor Hep Review hep.org.au / HEP REVIEW / 5

liver health report

Living in

Australia’s liver danger zone ut simply, the liver danger zone is the point at which a P person’s risk of serious and life-threatening liver disease caused by hep B or C significantly increases due to age.

Australia’s ageing population and the age demographics of people living with chronic hep B and hep C are combining to place an everincreasing number of Australians in the liver danger zone and one step closer to serious liver disease.

If you haven’t had a liver check and fibroscan for six months or more, why not make an appointment today?

more at liverdangerzone.com.au 6 / HEP REVIEW /

NEXT Check out what your C me Advocates are doing about this in EQUAL TREATMENT ACCESS Playing the waiting game

FEATURE

EQUAL TREATMENT ACCESS PLAYING THE WAITING GAME David Pieper

“I

believe in Equal Treatment Access because everybody living with hepatitis C is entitled to the same standard of care no matter how they acquired hep C, no matter what the condition of their liver and no matter whether they have had treatment previously,� says Glenn.

Glenn and four other Australians living with hepatitis C are pushing for access to sofosbuvir which when used in combination with other drugs, has a cure rate of over 90 per cent.

The drug has become available in many other countries but is yet to become available in Australia.

health care workers who were indirectly affected also made submissions based on the difficulties faced by people they were working with or were close to.

In the first wave of the campaign Hepatitis NSW C me Community Advocates were active in encouraging other members of Hepatitis NSW and people from the wider affected community to make submissions to the PBAC.

Sadly the PBAC decided at its July meeting not to recommend sofosbuvir on the basis of unacceptably high and likely underestimated cost-effectiveness and the high price and likely budgetary impact on the PBS. This rejection includes people with cirrhosis and people with serious liver disease as well as those with less serious liver disease.

Over 75 submissions demonstrated how they were affected by hepatitis C and why they needed new drugs like sofosbuvir to be made available in Australia. Family and friends and

Meet the faces of ETA on pages 8 and 9.

Story continues on page 10 hep.org.au / HEP REVIEW / 7

equal treatment access

the faces of eta

OPI

JANE

PHILLIPA

I knew all about harm reduction, so getting hep C was a shock and it has affected my life a great deal.

I had a number of health problems in 2010 which led to my diagnosis. My health is now reasonably good because I radically changed my lifestyle.

I went from being a high achiever to someone who struggled to cope. I had an enormous investment in being a doctor-I wanted to be a professor of medicine but ended up with a limited career as a result of hepatitis C.

Like 230,000 other Australians, I am waiting for a more tolerable permanent cure for my hep C. I believe sofosbuvir and simeprevir will provide that – but they need to be made available for everyone.

I feel like my life is on hold waiting for treatment. I don’t think that I should have to wait for my liver to be damaged just to get well again.

I swim twice a week and eat fresh fruit and vegetables. But I suffer from sleeplessness, night sweats, brain fog and mood swings as a result of my hep C. It makes me feel quite upset that I have missed out on trials which could cure me because it is a daily struggle dealing with hep C. I don’t want to miss out on the chance to cure my hep C with sofosbuvir.

Everyone with hep C deserves an equal chance of a cure.

I’ve had Interferon treatment twice with very toxic side effects. When treatment failed the second time I had a period of depression.

I have learned to be resilient, but every aspect of my life is severely impacted by hepatitis C. The new treatments are my first chance of cure in over 10 years.

They would give me the opportunity for an active life and the ability to pursue my dreams.

The hep C breakthrough 230,000 Australians have waited for is here . . .

Images by JJ Splice

8 / HEP REVIEW /

equal treatment access

GLENN

LEN

I was diagnosed 15 years ago.

Since then I’ve taken good care of myself. I’m working as a therapist now and I’m interested in complementary therapies.

I’ve had hepatitis C for 31 years, after contracting it from infected blood products in 1991.

I chose not to have treatment because I heard that the interferon treatment had severe side effects and there was only a small chance of clearing hep C.

In 1993 I took part in one of the first Australian trials of interferon. Most people do six, 12 or even 18 months, but I’ve spent an incredible 14 years on interferon and was still not able to clear the virus.

Now I’m ready to try treatment with sofosbuvir but if it is restricted to people with severe liver disease I won’t qualify.

After enduring so much heartache and suffering I’m looking forward to a cure which I think I deserve.

I’m worried that I might miss out on the new drugs because I’ve been taking good care of my liver.

My latest fibroscan test shows I have cirrhosis of the liver. I enjoy spending time with my grandchildren and I don’t want that time cut short by liver failure.

what are we waiting for now?

“I’ve spent an incredible 14 years on interferon and was still not able to clear the virus.”

EQUAL TREATMENT ACCESS hep.org.au / HEP REVIEW / 9

equal treatment access

Hepatitis NSW is responding immediately.

The Equal Treatment Access campaign now moves into high gear with the release of a social media campaign supported by a video clip. The video clip features Opi, Phillipa and Len who are still living with hep C as they have not been able to clear it using existing treatment, as well as Jane and Glenn who have been waiting 15 years for better more effective treatment come along.

“Our stories are all different stories but we have one thing in common” said Phillipa, who features in the video clip. “We all need access to sofosbuvir to enable us the get rid of hep C”.

Phillipa who was exposed to hep C as an intern at Concord Hospital, has tried treatment several times but the hep C has returned after treatment both times.

Singer Jane Little, who also features in the video clip was days away from commencing treatment with interferon in 2012, when a blood test indicated a rheumatoid factor in her blood meant she would be unable to take the interferon without risking permanent rheumatoid arthritis. “I felt like I had crashed into a brick wall at 100km per hour” said Jane.

Everyone living with hep C as well as those who are lucky enough to have cured it, is urged to get behind the Equal Treatment Access campaign by visiting the website: www.bit.ly/ETA2014 to sign the petition.

Healthcare workers are also encouraged to get behind the campaign. As Vince Fragomeli, CNC from Nepean Hospital in Sydney, says “Healthcare workers have a vested interest in seeing patients cured of hep C so I am happy to sign the petition and encourage all my colleagues to do so as well”. 

We want to hear from you.

Join the conversation Twitter@hepatitisnsw Facebook - Hepatitis NSW

I enjoy spending time with my grandchildren and I don’t want that time cut short by liver failure.

10 / HEP REVIEW /

equal treatment access

EQUAL TREATMENT ACCESS bit.ly/ETA2014

Watch the video

Sign the petition

Share it with your friends

Because access to treatment is everybody’s right hep.org.au / HEP REVIEW / 11

MY STORY

My story Maria

I am 46 years old and I have had my hepatitis for 28 years, and yet have had no desire to take interferon. No desire to feel ill or off-colour for 12 months, no desire to feel depressed, no desire to inject myself, no desire to have my already thin hair fall out! Maybe it is my ‘She’ll be right – I won’t get liver cancer’ attitude or maybe it was my optimistic streak which wanted to wait for something better in the future.

All this waiting may have paid off as I became a participant in a clinical studies trial in n September 18 2012 I had my first Christchurch, New Zealand, which involved dose of non interferon-based drugs to taking two drugs - sofosbuvir and ledipasvir + try and eradicate my hep C virus. I have ribavirin for 12 weeks. And so the ritual began. genotype 1a and have never been on any A medium-fat breakfast followed by five pills in treatment for my hepatitis before (treatment the morning, and in the evening a normal meal naive). I took herbal remedies for five years followed by two pills. Timing was important, (2001-2006) and my inner self and immune and the breakfast and evening meal had to system felt fantastic. My dentist said he’d never be 12 hours apart, with the pills being taken seen my gums looking so good! immediately afterwards.

O

Having a medium-fat breakfast wasn’t as easy as it sounds. I’m not hungry first thing in the morning and having Weetbix with fruit, yoghurt and toast with cheese every day for breakfast was a challenge.

Image by Matti Vuorre, Flickr Creative Commons

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mY STORY

Occasionally I would treat myself and get eggs benedict from my favourite café. One interesting side effect was I no longer wanted my daily caffeine fix! My taste buds had changed. And another plus was I lost four kilos.

At the clinic’s weekly visits we were put through the usual tests. Urine samples, ECG, blood pressure and, of course, the blood tests.

Usually six to eight vials were taken each time. These were sent off to the US, where the company that developed the drugs is based.

The file folder at the end of the bed was getting larger and larger. I found it interesting following the results.

The best result came through at the end of week two. My viral load went from 13 million to 84. And at the end of week three it was 15! Ironically, 15 or below is considered undetectable. I had to pinch myself. What fantastic results!

However, a side effect I didn’t find so easy was the low red blood cell count, which was caused by the ribavirin and led to anaemia. I felt very old when I had to climb stairs or walk fast.

My legs were so weak and pins and needles happened regularly. So, upon advice, I upped my meat intake. Steak has never looked so good! And this stabilised my red blood cell

count. If it had fallen below a certain level they would have taken me off the trial.

Another side effect was a very bad ‘ribavirin rash’ on both my arms. This was exacerbated when I went for a short holiday to South Australia and the heat was so much more intense than NZ. I had to seek help from a pharmacy as I was beginning to scratch so much to relieve the intense itching. Fortunately, I only had two weeks to go on the trial and the end was in sight.

I am very grateful to the Christchurch Clinical Studies Trust that I had the chance to be on this trial. I still can’t quite believe that the virus has gone from my body.

I am waiting for the six-month PCR test to come back negative, and then perhaps it will sink in properly and I can shout it from the rooftops. I don’t feel any different physically, but psychologically I do. This ‘invasive thing’ that was so much a part of me has gone.

Thank goodness for science and the neverending final frontier.These ‘next generation’ Direct Acting Anti-viral drugs are incredible and give hope where there was none.

Hep Review thanks HepCNZ and Maria for their kind permission to reproduce this story.

We want to hear from you about your story together we’ll share it with our community.

hepreview@hep.org.au

hep.org.au / HEP REVIEW / 13

news

LOCAL NEWS

news - new south wales - australia Number of women in australian prisons skyrockets There has been a 13 per cent year on year increase (298 persons) in females in custody and an 18 per cent year on year rise (142 persons) in Aboriginal and Torres Strait Islander females in custody since June 2013, according to a report released by the Australian Bureau of Statistics (ABS) recently.

“The overall number of persons in custody increased by 11 per cent (3222 persons) nationally between the June quarter 2013 and the June quarter 2014,” said William Milne, ABS Director of the National Centre for Crime and Justice Statistics.

“Aboriginal and Torres Strait Islander prisoners have also increased nationally by 10% (872 persons) between the June quarter 2013 and the June quarter 2014.

“While federal-sentenced persons in custody decreased annually by 3 per cent in the June 2014 quarter, the number of federalsentenced females in custody increased by 18 per cent for the same period,” Mr Milne said.

Rates of hep C among women in prison are very high, with as much as 60% of women in prison testing positive for hep C antibodies.

HEPATITIS B AND C STRATEGIES LAUNCHED On Monday 15 September 2014, the NSW Minister for Health, the Hon Jillian Skinner MP, released the long-awaited NSW Hepatitis B and C Strategies.

The Hepatitis B Strategy is the first ever state-wide strategy for hep B in NSW, and represents a significant commitment by the Government to tackling this

14 / HEP REVIEW /

epidemic. Targets of the Hepatitis B Strategy 2014-2020 include: • Ensuring that all babies born to hep B-positive mothers receive hep B immunoglobulin within 12 hours of birth, and • Increasing the number of people living with hep B receiving antiviral treatment (when clinically indicated) by 300%.

The third NSW Hepatitis C Strategy is also important to recommit focus and – hopefully – resources to help to reduce new transmissions. Targets of this strategy, which also runs from 2014-2020, include: • Reducing sharing of injecting equipment among people who inject drugs by 25%, and • Increasing the number of people accessing hep C treatment in NSW by 100%.

Hepatitis NSW Board President Warren Fahey spoke at the launch, welcoming the release of both strategies, and expressing Hepatitis NSW’s commitment to working with the Government and partner organisations to help achieve these goals.

HEP C RATES DROP IN SYDNEY among people who inject drugs The incidence of hep C among Sydney’s injecting drug users appears to have dropped over the past decade, according to research published in the Medical Journal of Australia.

Dr Bethany White and Professor Lisa Maher, from UNSW’s Kirby Institute, and colleagues found that HCV incidence was 7.9 cases per 100 person-years between 2009 and 2011, a significant drop from 30.8 per 100 personyears seen in a similar cohort between 1999 and 2001. The result, the researchers wrote, was “consistent with other data

sources indicating that the epidemiology of HCV among people who inject drugs (PWID) in Australia is changing”.

Younger age was significantly associated with an increased risk of HCV infection, as was daily or more frequent injecting of drugs. However, the researchers found that participation in opioid substitution therapy (OST) was protective against incident HCV infection, with a greater than fivefold reduced risk among those who mainly injected heroin or other opioids.

“The potential role of OST in preventing HCV infection is encouraging, given improving access in the Australian setting”, the authors wrote.

“The number of people receiving OST nationally has almost doubled since 1998, from 1.3 to 2.1 per 1000 population, and this has been accompanied by a concurrent reduction in the population size of PWID,” the authors wrote..

“These two factors are the likely key drivers of reduced HCV incidence, including the lower incidence observed in our study.”

Despite the encouraging reduction in HCV incidence, the researchers pointed out that “young PWID in Australia remain at risk”.

“Other prevention and education initiatives – such as increased access to sterile injecting equipment and innovative health service delivery models – will remain essential.”

Head to www.hep.org.au for links to the full articles

news

WORLD NEWS news - international Students Sue UK Uni for HIV, Hep C Scare More than 60 students are suing the University of Derby in the UK after finding out that they were potentially exposed to HIV and the hep C virus (HCV) by a healthcare worker who botched vaccinations and blood tests while employed at the school, the Daily Mail reports.

Health experts say 629 former and current students at the university were contacted in April after an investigation revealed several potential “errors” in the way a health worker was using syringes at a school-run clinic between September 2005 and October 2013. Reports show that the staff member reused syringe barrels, which may have put students at risk of contracting the blood-borne viruses.

So far, there have been no reports of any infections. However, students are suing the university because they claim that receiving news of the health scare in the middle of finals season caused them to suffer unnecessary stress and anxiety. Attorneys representing the students say they are seeking damages “in the region of £400,000” (AU$600,000) to make up for the scare.

EGYPTIANS RUSH HEALTH MINISTRY TO ACCESS NEW HEP C TREATMENT More than 171,000 hep C patients registered with Egypt’s Health Ministry to receive a potential cure for HCV less than 72 hours after registration opened, Egypt’s Health Minister said in September.

The new treatment pill for hep C

by Gilead Sciences has arrived in Egypt at more than a 99 per cent

discount to the usual US price.

Gamal Esmat, a member of the Egyptian National Committee on Viral Hepatitis, said that about 171,000 people had registered within days of online registration opening on the Health Ministry’s website.

For many Egyptians suffering from hep C, however, the drug remains costly. In Egypt, the drug will cost about AU$340 for a 12-week course of treatment, according to the Health Ministry.

In the United States, the same treatment will cost AU$96,000.

The website allows patients to register using their national identification cards. Those who register are told within 24 hours which medical centre they should visit for the treatment. At least 26 medical centres across Egypt are equipped to receive HCV patients seeking the new treatment.

Egypt has the world’s highest prevalence of the virus, which the World Health Organization estimates infects more than 150 million people worldwide. More than 12 million Egyptians suffer from HCV. SOVALDI UPTAKE PAUSE When Gilead Science’s Inc. launched their new hep C wonder drug Sovaldi in the US the drug scored AU$3.95 billion in sales in the second quarter, but since then the uptake has dropped off.

Why is this?

According to some analysts, it’s the same game that has been played for a while: some people call it warehousing. Broadly speaking, it’s to do with waiting for better treatment combinations to become available. This means that demand for drugs containing

Sovaldi will pick up once Gilead’s Sovaldi-ledipasvir combination Harvoni is approved by the United States’ Food and Drug Administration.

The main advantage of Harvoni isn’t necessarily on the efficacy side, but Sovaldi-ledipasvir can be taken alone, while many people seeking treatment for hepatitis C in the US currently have to take Sovaldi with difficult-to-tolerate injected interferon.

Beyond the lack of injections, the all-oral combination will have a huge advantage because it will side-step the symptoms that many patients experience with interferon.

EU APPROVES DAKLINZA Another new hep C treatment drug has been approved for use by the European Union. BristolMyers Squibb announced in August that its new hepatitis C drug, Daklinza, had received approval.

Daklinza is a potent pangenotypic NS5A replication complex inhibitor. It has been ratified for use in combination with other treatment drugs across genotypes 1, 2, 3 and 4 for the treatment of chronic hep C virus infections in adults.

When used in combination with sofosbuvir, this all-oral interferonfree regimen has been shown to provide cure rates of up to 100 percent in clinical trials, including among patients with advanced liver disease and those for whom previous treatment with protease inhibitors has not resulted in cure.

For daily news updates follow Hepattis NSW on Facebook and Twitter hep.org.au / HEP REVIEW / 15

drug policy reform prejudice

Evidence-based practice tHE WORLD HEALTH ORGANIZATION & THE FUTURE OF DRUG POLICY LAW REFORm

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Images from Google Images

Adrian Rigg looks at what the World Health Organization’s latest recommendations around drug law reform would mean for Australia

FEATURE

W

hat would you do if you had tried to achieve something for years, I mean really tried, but it wasn’t working?

Redouble your efforts? Try a different approach?

Or would you give up altogether?

Many countries, including Australia, have laws that make it illegal to use some types of drugs.

The effects of these laws are felt throughout our society – they include: corruption, preoccupation of police forces; crowding of the legal system, and the costs associated with this; underground and unregulated drug production and distribution; and isolation of people who use some drugs. Yet after many years and many millions of dollars, some people in Australia continue to use drugs. In an ideal world a country’s laws are designed to protect the greatest number of citizens, but what should be done in instances where the laws seem to be causing harm to some groups of people in the absence of any benefit to society as a whole?

Many people are calling for changes to laws surrounding personal drug use where no other people are harmed.

The WHO Guidelines

In the 2012 report “Risks, Rights and Health”, the Global Commission on HIV and the Law (an independent body convened by the United Nations Development Programme and UNAIDS) states that wars on drugs are effectively wars on the people who use drugs.

These people are subjected to a range of disadvantages including: police intimidation, violence and incarceration; stigma and discrimination; and difficulties accessing basic needs such as healthcare, legal protection and housing.

Legality and incarceration “Decriminalisation” would mean that drugs are still illegal, but policing and prosecuting of people who use drugs is made a low priority and deterrents are less likely to include prison.

This is different to “legalisation”, which would make drugs legal and accessible, albeit with possible restrictions, for example as with the restrictions on buying alcohol and cigarettes.

The World Health Organization (WHO) has recently called for the worldwide decriminalisation of people who use drugs.

The focus of their stance is on strategies to protect people in key populations from HIV; this includes people who inject drugs, and, therefore, also applies to hep C.

A direct result of the current illegal nature of drugs is the incarceration of many people for using drugs. Being in prison is a known risk factor for exposure to hep C, through sharing of drug injecting equipment in an environment where people are denied access to sterile injecting equipment, unsterilised tattooing and WHO, in its 2014 report “Consolidated piercing, and the increased risk of violence Guidelines on HIV Prevention, Diagnosis, where blood may be present. This affects Treatment and Care for Key Populations”, the rest of the community when people are states that “without protective policies and released from prison and return to their lives decriminalisation of the behaviour of key and families. There are many infection control populations, barriers to essential health services policies within the prison system, but in NSW will remain; many people from key populations (or, as yet, any Australian prison) needle and may fear that seeking healthcare will expose syringe exchange is not one of them. them to adverse legal consequences.” hep.org.au / HEP REVIEW / 17

FEATURE

Clearly, putting groups of people into prison for drug offences increases the risk of spreading hep C for them and for the rest of the population.

DRUGS IN

OZ

2013

8 million

About people in Australia aged 14 years or older had used illicit drugs at some time

Dr Alex Wodak, Emeritus Consultant, Alcohol and Drug Service at St Vincent’s Hospital, and President of the Australian Drug Law Reform Foundation, says that the main success of drug prohibition has been as a political strategy for governments wanting to appear tough on crime.

“Consequently, criminal justice measures such as customs, police, courts and prisons are generously funded despite a poor return on investment,” says Dr Wodak. “In contrast, health and social interventions are poorly funded despite a much better return on investment.”

that’s 4 in10 people Almost

3 million

people had used illicit drugs in the last 12 months

Successful decriminalisation models Portugal decriminalised possession of personal amounts of illicit drugs in 2001 – long enough ago for some trends to emerge: new cases of HIV dropped dramatically in the following years, as a result of harm reduction services; the number of people undertaking treatment for drug use roughly doubled; fewer people died from causes related to drug use; and they reported decreases in the number of people using illicit drugs.

Rather than being arrested and sent to prison, people in Portugal who use drugs are

National Drug Strategy Household Survey 2013 - Key findings

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FEATURE

assessed and given a range of conditions, including the possibility of a fine, community service, educational programs or drug treatment programs. These programs are paid for by the money saved in the criminal justice system.

Community organisations work to eliminate stigma and discrimination and improve access to health care services.

Several other countries have seen improvements in harm reduction through different approaches to how they deal with drug use, including places where the drug market is far more widespread than Australia.

Mexico decriminalised possession of drugs in small amounts in 2009; they believe that if people are unafraid of arrest they are more likely to be tested for HIV and hep C, and more likely to access treatment for these and other health issues. Brazil took similar action in 2004; there has been no reported increase in drug use in either country.

In all these cases, any benefits cannot be seen as due solely to decriminalisation; other social and legal changes have to be made at the same time to help improve people’s lives. To have a real impact on health and wellbeing of a population, decriminalisation of drug use should be coupled with an increase in community health education and outreach, and increases in healthcare services for the people in key populations.

Australia already has good, although not universal, health services including needle and syringe exchange programs; the main benefits of decriminalisation would be keeping people out of the criminal justice system, reducing stigma and discrimination, and removing barriers to healthcare.

WHO states that the prevalence of HIV is caused, in part, by laws criminalising drug use, because it limits access to services, and constrains the effectiveness of services. This can also be applied to hep C. WHO says that it is important for people to understand their rights as individuals, especially the right to healthcare; changing the legal status of their personal actions would help with this.

WHO states that the prevalence of HIV is caused, in part, by laws criminalising drug use, because it limits access to services, and constrains the effectiveness of services.

This can also be applied to hep C.

hep.org.au / HEP REVIEW / 19

FEATURE Opposition to decriminalisation Of course decriminalisation issues don’t impact only on people who use drugs; those around them and people who work with them are also affected. The Community and Public Sector Union (CPSU) represents employees in the public sector, among others, and says that its members are against decriminalisation because it would expose them to danger.

This is most pronounced in the corrective services sector, where union members are in direct contact with people in an enclosed setting.

Alistair Waters, Deputy National President of CPSU, has said that needle exchanges in prisons could increase the spread of bloodborne viruses rather than reducing it, by raising the number of needles in a prison that could be traded as commodities and reused. Mr Waters says that the union’s members are concerned with doing their best to protect prisoners and that needle exchange would undermine this, as well as endanger their own health. He also states that any efforts at treatment for drug use would be hampered by making it easier for inmates to continue using drugs in prison.

“This poses real risks to the community and is likely to lead to reoffending and the associated human and economic costs,” says Mr Waters.

Ed: For an interesting look at the arguments for and against prison NSP, check out ‘They say / But they say’ on page 24 Decriminalisation in daily life The International Network of People Who Use Drugs is a member-based organisation which advocates and lobbies for the rights of people who use drugs. Chair Jude Byrne says that current laws discourage people who use drugs from accessing healthcare as they fear discrimination and legal consequences.

“Drug users commonly put off going to doctors until the very last minute, when a range of other harms develop due to late care,” she says.

20 / HEP REVIEW /

Portugal decriminalised possession of personal amounts of illicit drugs in 2001.

New cases of HIV dropped dramatically in the following years, the number of people undertaking treatment for drug use roughly doubled; fewer people died from causes related to drug use; and they reported decreases in the number of people using illicit drugs.

FEATURE

DRUG arrests & seizures IN

OZ 2012-2013

Australian Crime Commission 2013

1 arrest every 6 minutes 1 seizure every 7 minutes 1kg seized every 28 minutes

101, 749 arrests 86, 918 seizures 19.6 tonnes

highest on record highest on record 2nd highest on record

It is uncertain whether decriminalisation would lead to a decrease in stigma and discrimination for people who use drugs; however, some research has found that the public is against drug use largely due to its illegal status.

Ideally, any changes to the law would be accompanied by increases in access to healthcare and other support services, so that all people’s health and wellbeing would be improved.

Ms Byrne says that the impact on the daily lives of people who use drugs would depend on the model of decriminalisation adopted, and the reasons for adopting it. WHO’s call for decriminalisation has the aim of decreasing the spread of blood-borne viruses such as HIV and hep C.

Dr Wodak says that continued criminalisation of drug use is detrimental to society as a whole.

“We desperately need change, but we have to make sure that we don’t settle for a situation that only partly addresses the needs of our community, such as a reduction in an epidemic that the general community wants to get sorted,” says Ms Byrne.

“By only addressing a section of our lives and not the whole lived experience, no changes will really make much difference to the isolation and discrimination people who inject feel and are subject to.”

“While drugs have been increasingly criminalised in Australia and other countries over the last 50 years, the drug market has expanded and become more dangerous and drug policy outcomes have worsened – including deaths, disease, crime, corruption, violence and threats to national security,” says Dr Wodak. 

Have your say – join the conversation Twitter@hepatitisnsw Facebook - Hepatitis NSW Email - hepreview@hep.org.au hep.org.au / HEP REVIEW / 21

In Memory

In memory Helen McNeill 1964 - 2014 Our friend and colleague Helen McNeill died in July this year.

Helen was a long-standing Board member of Hepatitis Australia and former CEO of Hepatitis Victoria, and for many years served on the National Ministerial Advisory Committee. We pay tribute to her leadership, her loving spirit and her significant contributions to the viral hepatitis sector in which she worked for almost a decade.

Hepatitis NSW

When her cancer returned in 2012 Helen said that she wasn’t sure she would make it to 50.

Helen surprised herself and celebrated that milestone birthday this year. As her health deteriorated Helen retired to spend precious time with her family and close friends. Our thoughts go out to Helen’s parents, her partner, Duncan, and her daughter, Molly.

Wherever you are, Helen, we know that you are shining brightly.

22 / HEP REVIEW /

Your photos, your stories Share your photos with your communities.

Email us at hepreview@hep.org.au for more information.

Images by Exposition by RAF

Those of us who knew Helen well have been educated and entertained by her in equal measure over the years. Helen was a woman of keen intellect, insight and irreverent humour. Helen was also a great leader, a passionate advocate and a wonderful friend.

We remember her with immense warmth and affection.

PHOTOCALL PROJECT

MY STORY

My story Annie I

had the most discriminatory experience of my life related to my hep C as a result of treatment by a doctor.

A few days later a second doctor, horrified about his colleague’s treatment of me, said there were no problems with me scuba diving and gave me a medical certificate. In In 2005 a friend and I decided to learn to the meantime, my friend, desperate to do scuba dive. We were required to give our dive the course and unable to get a refund, was course provider a medical certificate from a conned by the course provider into buying doctor (the name of which was suggested to an expensive breathing apparatus which us by the course provider) and I revealed my was given to me as though it was part of the hep C status as requested. provider’s equipment.

The doctor said he was unable to supply clearance for the course because if something went wrong, I would have to share breathing apparatus with my “buddy” or perhaps be given mouth-to mouth-resuscitation – exposing that person to hep C.

I was furious when I found out.

I felt really unsupported by my friend for not making a stand with me and telling the provider that they were acting in a discriminatory way. I was furious, too, at the provider for taking her for a ride financially and for refusing to refund our fees. They took advantage of the situation. The doctor is still practicing.

I expressed my incredulity to the doctor that his information was so incorrect. I pointed out that I had never given anyone hep C despite having had a few kissing partners! He refused to approve a certificate and suggested all I I can’t say I’m any better at advocating for could do was get a second opinion. myself – but thankfully I haven’t needed to.

Editor’s note: What happened to Annie is unacceptable and discriminatory.

If you have experienced something like Annie and want to know what you can do about it, contact HALC on 9206 2060 or call the Hepatitis Infoline on 1800 803 990.

Thanks for sharing your story, Annie.

Hep Review magazine is a lifeline for many people, linking them to news, information, views and stories.

We want to hear from you about your story together we’ll share it with our community.

Image by Scuba_thib, Flickr Creative Commons

hepreview@hep.org.au hep.org.au / HEP REVIEW / 23

they say/ butthey say

They say . . .

They say/But they say is about one story having two sides.

They say all is fair in love and war, but not in journalism . . .

The proposed needle exchange scheme could increase the spread of bloodborne viruses rather than reduce it.

Needle exchange also increases the risk of staff and inmates being threatened or attacked with a syringe, as with Geoff Pearce.

The willful pursuit of a flawed scheme is more about politics than a practical response to the serious issues of blood-borne virus management in the jail.

Your challenge is to match the “Home truths” about prison NSP according to Alistair Waters, deputy national president of the Community and Public Sector Union (CPSU) to the “evidence-based truths” about prison NSP from the Public Health Association of Australia and Hepatitis NSW. We’ve done one for you . .

Needles, like drugs, are valuable currency within the prison system.

A needle exchange sends mixed messages about institutional support for rehabilitation and the ACT government’s approach to illicit drugs.

Rehabilitation efforts would be significantly undermined by enabling the ongoing drug habits of prisoners while inside and then releasing them still addicted to drugs.

Jail needle exchange is poor public policy that fails to address the causes of the transmission of blood- borne viruses and could heighten the risk of either prisoners or staff getting infected.

There are significant risks that inmates may be stood over to obtain needles for others to use

Needles will continue to be shared and the exchange program is likely to facilitate the sharing of needles within the prison’s walls.

Rates of hep C in Australian prisons are estimated at 30% for prisoners in male prisons 24 / HEP REVIEW /

they say/but they say

but They say . . .

Numerous studies have shown that prison NSP programs effectively reduce needle sharing.

If used injecting equipment can easily be traded for sterile equipment, the need to share and reuse equipment is removed.

People in prison actually don’t want to contract illnesses that can kill them.

The evidence shows that a small amount of drugs will continue to slip through the net and be used by a small number of detainees. NSP is a strategy that covers the gap left by demand and supply reduction.

Evidence from the more than 50 prisons across the world where NSP has been introduced show that the spread of blood-borne viruses has been reduced as a result.

When the supply of something goes up, the price comes down.

Needles in a prison with NSP lose their value as currency.

People are currently using and injecting drugs in Australian prisons. NSP accepts this reality, and seeks to reduce the harms that are part of that reality.

Denying access to NSP denies this reality and does nothing to reduce the resultant harms.

Standover tactics are currently used to force people in prison to share their possessions, including needles. These tactics may persist in a prison with NSP but since sterile equipment will be readily available, it will have less value and therefore be less likely to result in standover bullying.

Of course, it’s difficult to be impartial when NSP is clearly the most effective way that hep C and other blood-borne viruses can be prevented. And the CPSU is right - NSP in prison NSP is not a cure-all. But it’s worth remembering that the current system isn’t working, and that prison NSP is designed to reduce risk of blood-borne virus transmission, not to redress all the current problems within prisons.

The CPSU is right in part: NSP alone will not halt the spread of BBVs in the ACT prison. It needs to be part of a comprehensive and integrated approach that incorporates education, prevention, testing, treatment and aftercare initiatives as well.

There have been no reports of syringes having been used as weapons in any prison within an operating NSP. Geoff Pearce – a NSW custodial officer who died in 1998 after being assaulted by a detainee with a blood-filled syringe was assaulted in a prison that had no NSP and there have been no reports of syringes having been used as weapons in any prison within an operating NSP.

Jail needle exchange is poor public policy that fails to address the causes of the transmission of blood- borne viruses and could heighten the risk of either prisoners or staff getting infected.

Have your say.

Join the conversation Twitter@hepatitisnsw Facebook – Hepatitis NSW

Rates of hep C are estimated at 45% for prisoners in female prisons in Australia. hep.org.au / HEP REVIEW / 25

lifestyle

7 liverloving tips for eating out

BRIGITTE STAPLES

Brigitte is a regular contributor to Hepatitis NSW’s monthly newsletter The Champion and runs her website www.liverlife.com For more recipes subscribe to The Champion online at bit.ly/Csubscribe

26 / HEP REVIEW /

E

ating out can be a challenge when we want what’s best for our liver, but, with a little thought and planning, we can avoid the extreme compromises that we might make if our usual foods aren’t available.

Following these 7 simple tips and having a tasty alternative, like these delicious Chocolate Walnut Balls, can help.

1 2 3 4

Always eat well at home, and save your compromises for when you have less control over what you eat, such as at parties, weekend outings and holidays.

Don’t get caught out hungry or lagging in energy, as this is when you are more likely to make unhealthy choices.

Eat before you leave the house.

Become familiar with outlets for healthy foods in places you often go when you are out, or places you know you’ll be visiting.

A quick internet search before you leave home can help with this.

Choose fresh. If you are buying your lunch or snacks out, look for fresh juice outlets, fruit and veg suppliers and salad bars. Check menus for salads, soups, fish and other suitable menu items before entering a restaurant. Aim for a balance of fresh vegetables, wholegrains and lean protein, limiting creamy and fried foods.

5

6

7

When ordering meals, ask for variations. Can they make your order without oil, salt or sugar? Ask if they can put sauces, dressings or anything that might be less than optimal for your liver health on the side, so that you can control how much or how little you use.

When going to parties, take something with you to share that you know is healthy – vegetable sticks and dips, a salad, or other favourite dish that you know you can eat. This might take a bit of research, but you can use the same ideas over and over.

Always have some kind of snack in your bag. Even a boiled egg, celery sticks filled with peanut butter or hummus, assorted nuts, and fresh fruit will help – or you can try these delicious Chocolate Walnut Balls.

lifestyle

Chocolate Walnut Balls If all else fails, eat one of these rather than heading for the fastfood counter or grabbing a cream puff in desperation. They can be made ahead of time and kept in the freezer. Wrap one in foil to take out for a liverloving treat. Be warned, your friends might want what you’ve got!

Makes 20 Ready in 30 minutes INGREDIENTS • • • • • • • • •

400 gm walnuts 2 heaped tbs raw cocoa powder 4 heaped tbs unflavoured pea protein 1 tsp ground cinnamon 30 fresh dates, pitted and chopped 3 tbs fresh orange juice zest of 1 orange seeds of 1 vanilla bean or a tsp vanilla essence (no alcohol) almond meal or LSA (linseed, sunflower and almond meal) for coating

METHOD

Image by Mercedes Aspland

Place walnuts, cocoa, pea protein and cinnamon into a food processor. Process until coarsely ground. Add dates, orange juice, zest and vanilla. Process until the mixture clumps together.

Divide the mixture into 20 equal portions. Roll each one into a ball with the hands, and roll in almond meal.

Store in the freezer if not consumed within a few days.

Why eat Linseed Sunflower & Almond (LSA)?

LSA is full of essential nutrients including fibre, magnesium, omega-3 fats, vitamins E, D, B1 (thiamin), B2 (riboflavin), B5 (pantothenic acid), biotin, calcium, phosphorous, zinc, potassium, and many other micronutrients.

Plus it tastes delicious, adding a subtle nuttiness and satisfying crunch to recipes.

hep.org.au / HEP REVIEW / 27

lifestyle

Sweet potato wedges

Healthy, quick and delicious, these wedges serves 4 as a snack or 2 as the main accompaniment to a meal.

Ready in 30 minutes INGREDIENTS • 750gms of sweet potato • Olive oil spray • ¼ tsp ground paprika • Salt & pepper to taste and for the dip • 200ml low fat plain yoghurt • 1 clove of garlic, crushed • 2 tbsp fresh mint, shredded METHOD

Tip: If you don’t have oil spray, put the wedges into a clean freezer bag and pour in a teaspoon or two of oil. Stir wedges around in the bag until they’re well coated with oil.

Google images

Pre-heat oven to 220ºC. Wash the sweet potatoes and pat dry (or peel them if you prefer) and cut into long thick wedges. Lightly spray with olive oil spray.

Spread wedges out onto a baking tray and bake for 40 minutes or until tender. Mix the dip ingredients together in a bowl and refrigerate until ready to serve.

Want to know more about living well with hep C? Check out the Living Well course - page 32

Image by Exposition by RAF

For more on healthy living with hepatitis go to www.hep.org.au

28 / HEP REVIEW /

Have a favourite liver-loving recipe you’d like to share?

Email it to hepreview@hep.org.au

hepcaustralasia.org The largest online support community for people living with hep C in Australia “What I love about hepcaustralasia is that it gives me a place to go where everyone is in the same boat.

We can talk freely about our experience without having to disclose to the wider world.

And, most importantly, it provides valuable advice and support for those of us on treatment.

It is a long, hard road but it’s made a lot easier by having sympathetic, like-minded people to talk to.�

Dee hepcaustralasia forum moderator

hepcaustralasia.org is proudly supported by Hepatitis NSW hep.org.au / HEP REVIEW / 29

It’s so much better to talk to someone than bottling it all up inside, especially if you are on treatment.

HepConnect definitely helped me, and I am motivated by other people who have been through the treatment.

I like being able to help people who are going through what I’ve been through, I wish HepConnect was around back when I was on treatment.

Throughout my 24 week treatment she was the only person I had contact with that had hep C. It meant so much to me to actually speak to another person who has been affected by hep C.

Hep Connect

treatment peer support

1800 803 990 30 / HEP REVIEW /

MY STORY

My story Simon I

shared once. When I first went to gaol I shared. Back then gaol was a lot different, in the ways and in the mentality of crims, the staunchness and the code (the culture and the way inmates behave).

Back then it was just green versus blue (inmates versus corrections officers), now it’s bitches and snitches (inmates who report on other inmates and/or don’t look out for other inmates’ wellbeing).

Back then, whoever was holding (had drugs) within the crew, like say the Aboriginals, we’d share, everyone would put in, you might have like a five weight (amount of drugs). Everyone knew what everyone had (in relation to blood-borne viruses).

This last time inside blokes got jealous because I wouldn’t let them use my fit, so they dogged (reported to prison officers).

I pleaded not guilty, but if I was caught I could have got whacked (sentenced) with three days pound (three days of solitary), more time or loss of privileges.”

Apart from the risk of blood-borne virus transmission from sharing syringes in prison, Simon demonstrates other health risks associated with injecting drug use in the prison environment when he shows the interviewer damage to his arms: “It’s because of the state of the needles; they’re like trying to stick nails in your arm.

They leave a crater like this (indicates a 3-4cm hole in his arm). I’ve also got an 8cm blockage in my upper arm from trying to use the same fit in the same place.”

Simon believes that providing sterile needles and syringes in prison would be beneficial to inmates and the broader community:

It would stop the spread of HIV, hep C and all those other viruses through the system.

It would stop people not telling or lying about what diseases they have. It would stop people going in with nothing wrong with them and coming out with HIV or hep C, you know? It’s sad . . .you wouldn’t have to worry about whether it would be blunt or like a nail, you could get a new fresh one whenever you needed it, it would be more efficient. It would be better; safer.

This is an extract from Stories from the Other Side - An exploration of injecting drug use in NSW prisons, a powerful and heartbreaking publication produced by NSW Users & AIDS Association (NUAA).

Simon’s story is one of many in the book, and one of many more similar stories from across NSW and Australia.

Interwoven with these, Stories from the Other Side canvasses the range of issues involved in NSP programs for prisoners. Health and legal experts examine the social issues, and detail the human rights issue that denying people in prison access to NSP represents.

What is unique about the book is the presence of voices rarely heard – those on the other side.

Download Stories from the Other Side at www.nuaa.org.au/wp-content/ uploads/2014/09/prison.pdf For more information contact: NUAA 1800 644 413 nuaa@nuaa.org.au Hepatitis NSW strongly supports the introduction of NSP in prisons in NSW and across Australia.

Share your story through Hep Review hepreview@hep.org.au

Image by Exposition by RAF

hep.org.au / HEP REVIEW / 31

workshops & courses

Living Well

Chronic Disease Self-Management Course Next course November/December - dates to be confirmed

For more information or to register, please contact: Sarah George Education & Community Support sgeorge@hep.org.au 02 8217 7705

Living Well is a peer-facilitated program and runs over two days on consecutive weekends.

Participants will learn how to set goals for their own health and get support to help them achieve it.

Get Bloody Serious

A workshop (mostly) about hep C Do you work with: People living wth hep C, people who inject drugs, young people, Aboriginal people or people affected by the criminal justice system?

How do you engage your communities and clients in conversations around hep B or C? Get Bloody Serious Workshops 2015 Attendees receive: • A statement of attendance • One year membership to Hepatitis NSW • HepLink eforum subscription • lunch + morning & afternoon tea

May 15 Attend an interactive workshop and get practical skills in hep C health promotion Increase your confidence in talking about the choices people make around risks and consequences.

Learn new activities to promote harm reduction and reduce stigma Includes a free kit packed with activities and tools for your organisation or group.

The course costs $30 and places are limited.

Free for members

02 8217 7707

32 / HEP REVIEW /

For more information or to register, please contact: Ruth Bearpark Education & Community Support rbearpark@hep.org.au

Images by Exposition by RAF

January 30

GOING going VIRAL viral NSW

We asked some of the young people and health workers involved in Going Viral NSW for their thoughts on the most innovative hep C prevention project this side of NSP. Here’s what they said . . .

KRC g into ng n i k l a etti of w erves entre) and g n e h t g C P “Feelin keton Road s of NS e v i l r e i h (The K nsight into t ll i a sma .” me clients made d n y a e nge face Sydn l challe o inject can nd a e r a wh ity a was ctivity ulties people und anonym a P S “The N ut the diffic pecially aro bo es think a taining fits, n” b o all tow m s when a ent in judgem tern NSW es Far W

Going Viral NSW is a partnership project between five local Health Districts and Hepatitis NSW. For more info head to hep.org.au

hep.org.au / HEP REVIEW / 33

lifestyle

When life gives you lemons . . .

EAT THEM! Lemon juice is high in vitamin C – a natural antioxidant that supports good health and is essential for a healthy immune system.

Below you’ll find some tips for using lemon to support your health and to deal with some of the side effects of treatment, and opposite a delicious recipe for egglant with lemon and garlic yogurt.

In addition to boosting the vitamin C in your diet, the acidity of lemon juice may help people with dry mouth by stimulating saliva flow, and can also be helpful in managing taste changes from medications.

For those trying to reduce their sodium intake, try using lemon juice or zest in your cooking instead of salt for a bit of freshness and zing.

1

Start with your paper white side up

2 34 / HEP REVIEW /

Google images

For some brain zing – try folding the easy origami cup by following these step-by-step instructions.

Fold the top corner down to the bottom.

Crease well and then unfold

3

Fold the bottom left hand corner up to the crease you’ve just made

lifestyle

Grilled Fairytale Eggplant with Lemon and Garlic Yogurt Prep time 15 mins Cook time15 mins Total time 30 mins Serves 4 Ingredients • • • • • • • •

1 cup plain yogurt 1 large clove garlic, minced 1 tablespoon fresh squeezed lemon juice 1/2 teaspoon salt 1 to 2 tablespoons milk 1/2 kg fairytale eggplant (small purple and white eggplants) 1 to 2 tablespoons regular olive oil (or as needed) pomegranate seeds

1. In a small bowl, stir together the yogurt, minced garlic, lemon juice and salt. Use milk to thin the sauce to the desired consistency and set aside. The garlic flavor will become more noticeable the longer it sits with the yogurt.

2. Slice the eggplant in half lengthwise and sprinkle liberally with salt (you can slice the stem off first but it looks prettier attached, like poached pears). Place in a colander over the sink.

3. Preheat a grill to medium-high for 10-15 minutes.

4. Rinse the salt from the eggplant and lightly pat dry. Place in a large bowl and toss with just enough olive oil to prevent the eggplant sticking to the grill.

5. It is easiest to grill the eggplant in batches since they are small and don’t take very long. Place 10-15 eggplant halves on the grill, flat side down. Cook for 2 minutes and then flip them carefully with tongs. Close the lid and cook for another 2 minutes. Remove from the grill, cover with foil to keep warm and repeat with the remaining eggplant.

6. Just before serving, drizzle the eggplant with the garlic yogurt sauce and sprinkle liberally with pomegranate seeds.

4

5

Now fold the bottom right hand corner up to the opposite side

Fold the front flap downwards

6

Google images

METHOD

7

Now fold the back top flap backwards in the same way

Open out a cup!

hep.org.au / HEP REVIEW / 35

discover

DISCOVER Research into viral hepatitis

POMEGRANATE FIGHTS HEP C By breaking the replication cycle of hep C, a new health benefit of pomegranate has been confirmed.

Hep C may prevent transplant rejection In a surprise twist, a new study in Science Translational Medicine claims that the hepatitis C virus can suppress the immune response that results in the rejection of transplanted organs.

In most clinical trials, transplant patients with viral infections are excluded due to the idea that their infection might hamper the success of the transplant.

Felix Bohne, Ph.D., a researcher at the Helmholtz Zentrum München center for environmental health research in Germany, studied 34 patients with HCV who had recently had a liver transplant. Bohne showed that the patients could stop taking immunosuppressive drugs to prevent rejection. Bohne’s team found that the mechanism that the virus usually uses to avoid detection by the immune system helps create an environment that promotes tolerance of the new organ. Basically, the virus acts like an immunosuppressive medication.

“The main option now is to find out exactly how the virus can favor the immunologic tolerance and try to mimic this, in order to get a therapy which can induce transplant tolerance without the need for the virus,” Bohne said.

36 / HEP REVIEW /

Researchers at the Indian Institute of Science (IISc) in Bangalore found that three compounds in pomegranate (punicalin, punicalagin and ellagic acid), suppress the hep C virus.

More specifically, these three pomegranate compounds found in the fruit’s peel successfully inhibit the NS3 protease enzyme in hep C. Regarding hep C, lead researcher professor Saumitra Das of the department of microbiology and cell biology said: “The NS3 protease enzyme is very important for the virus for the polyprotein process, in which the virus replicates. The compounds we have found in the pomegranate’s peel inhibit the enzyme and appear to block the catalytic site of the enzyme in a cell-culture system.”

To simplify, healthy cells were pretreated with the pomegranate compound, then inundated with the hep C virus, then spared because the pomegranate blocked hep C infection.

Because the pomegranate compounds blocks hep C’s life cycle, they inhibit virus entry and replication – two primary, therapeutic goals for stopping hep C. According to Das, about one litre of whole pomegranate juice yields between 1.5 and 2 grams of these compounds.

Based on Das’s research, we might expect to see future generations of hep C drugs based on punicalin, punicalagin and ellagic acid.

Editor’s note: This study was conducted with isolated compounds from pomegranate on Hep C virus in vitro and doesn’t suggest that drinking pomegranate juice has any particular benefit for people with hep C (but it tastes good!)

discover

THE END OF HEP C? Effective new drugs and screening would make hep C a rare disease by 2036, according to a new computer simulation conducted by The University of Texas MD Anderson Cancer Center and the University of Pittsburgh Graduate School of Public Health.

“If we can improve access to treatment and incorporate more aggressive screening guidelines, we can reduce the number of chronic HCV cases, prevent more cases of liver cancer and reduce liver-related deaths.” said Jagpreet Chhatwal, Ph.D., assistant professor of Health Services Research at MD Anderson, and corresponding author on the study.

Google images

Chhatwal and collaborators used a mathematical model with information from several sources including more than 30 clinical trials to predict the impact of new therapies called “direct-

acting antivirals” and the use of screening for chronic hep C cases. Researchers developed a computer model to analyse and predict disease trends from 2001 to 2050. The model was validated with historical data including a recently published national survey on hep C prevalence.

Researchers predicted that with new screening guidelines and therapies, hep C will affect only one in 1,500 people in the US by 2036.

HIV/HCV+ Have 12 Times Higher Death Rate Than Other Canadians People co-infected with HIV and HCV in Canada had a 12 times higher death rate than the general population of Canada, according to a 2003-2013 analysis.

Several studies show that some people with HIV—usually excluding people who inject drugs—are now living as long as their age and gender counterparts in the general population. To see if HIV/HCV-coinfected people were approaching the general population in longevity, researchers analyzed deaths in the multicenter prospective Canadian Co-infection Cohort.

The research team recorded deaths that occurred between 2003 and 2013. For people who fell out of the cohort during that period, the investigators determined vital status through Canadian provincial records. They calculated standardised mortality ratios (SMRs) comparing death rates in co-infected people with death rates of people the same age and gender and living in the same province in 2009.

Of the 1150 HIV/HCV co-infected people in the cohort, 133 died

to yield a mortality of 4.0 per 100 person-years, meaning 4 of 100 people died every year.

The overall SMR was 12.1 (95% confidence interval [CI] 10.1 to 14.2), meaning co-infected people had a 12 times higher death rate than their counterparts in the general population.

Mortality was substantially higher in HIV/HCV co-infected people than in the general population in every subgroup analyzed including men, women, people with a CD4 count below 200 cells/μL, people who currently inject drugs, people who smoke and people with advanced liver disease.

People who spontaneously cleared HCV infection and those who had a sustained virologic response (SVR) to HCV therapy had the lowest relative SMRs compared with the general population.

“HIV-HCV co-infected persons remain at markedly increased risk for death despite antiretroviral therapy,” the researchers conclude.

They propose that “interventions targetting modifiable risk factors such as substance use, smoking, adherence to antiretrovirals and timely provision of HCV therapy could substantially reduce death rates.” Newer anti-HCV regimens yield high SVRs in people coinfected with HIV and should lower mortality if regularly prescribed.

Head to www.hep.org.au for links to the full articles hep.org.au / HEP REVIEW / 37

discover

DISCOVER Research into viral hepatitis NEW TESTING TO PREDICT EARLY HEP C-RELATED CIRRHOSIS A genomic signature, combined with bilirubin and platelet tests, can help identify patients with early hepatitis C virus (HCV) cirrhosis who are at high risk for complications, new research suggests.

“This study provides additional evidence that a gene signature (...) can itself predict future clinical events for a patient with HVCrelated cirrhosis. It helps predict downstream deterioration in terms of liver failure and deaths from liver failure or risk for hepatocellular carcinoma,” said co-senior author Dr. Raymond T. Chung of Harvard Medical School in Boston.

“The most important aspect of this is really to help stratify or identify patients who may need more intensive follow-up, but also to potentially identify candidates for possible interventions that might help slow the progression of liver disease. Our hope would be to apply this in patients with a longer run-up so they can be identified further in advance and potentially intervened and treated before complications occur,” he said.

NEW HEP C DRUGS TO BE TRIALLED IN TREATING KIDS Researchers at St. Louis University will begin study enrolment to test the safety and efficacy of sofosbuvir with ribavirin to treat hep C virus infection in children.

38 / HEP REVIEW /

In a multicenter clinical study, researcher Jeffrey Teckman, MD, professor of pediatrics at SLU, will analyse the combination of sofosbuvir (Sovaldi, Gilead Sciences) and ribavirin among children aged three to 17 years in an effort to cure the infection while limiting side effects.

Sofosbuvir and ribavirin already is being used to treat HCV infection in adults and has shown cure rates of 90% to 100%, according to the release.

“A lot of times studies for children don’t get approved,” said Dr Teckman “The exciting part with our study is that the medication has already been tested in adults, and we are moving rapidly to test in children.”

“I think this treatment is a real game-changer. The previous treatments were arduous. People would often start the treatment, but eventually drop out. This new therapy is a revolution that affects people around the world.”

Editor’s note: yet another reason that new treatments need to be available for all.

CLINICAL TRIAL DEATH The development of BMS986094 (Bristol-Myers Squibb), a nucleotide-polymerase inhibitor for the treatment of chronic hepatitis C (HCV) infection, was terminated back in August 2012, but a new retrospective review analyzing adverse events provides an in-depth look at the cardiotoxicity associated with the investigational agent.

The findings may have profound implications for other

drugs in late-stage testing or others approved for use.

Investigators say understanding the mechanisms of cardiac dysfunction and its relevance to other agents will require more study.

Development of BMS-986094 was stopped after a 25-year-old male treated with 200-mg dose experienced rapidly progressive heart failure and died. The patient had been hospitalized with shortness of breath and was found to have a left ventricular ejection fraction (LVEF) <10%.

Now, as part of a retrospective review of the phase 2 study that included the index death, researchers report that 14 of 34 patients treated with BMS-986094 had some evidence of cardiac dysfunction.

The review was published online September 24, 2014 in Hepatology 2014; DOI:10.1002/ hep.27488.

We want to hear from you.

Join the conversation – Twitter@hepatitisnsw Facebook Hepatitis NSW Head to www.hep.org.au for links to the full articles

research recruitment

RESEARCH

Studies currently recruiting people living with hep C

The Hepatitis C Treatment Outcome Study

www.hcvstudy.bond.edu.au

You are invited to take part in a study designed to determine some of the physical, psychological, and social factors associated with hep C treatment outcomes.

Previous research has indicated that certain physical and psychological profiles predict better treatment outcomes across a range of medical conditions. Little is known of how these factors predict treatment outcomes in hep C.

LIVEr health project People living with hep C in Australia are invited to take part in a study about the experiences of living with hepatitis over time, including disclosure, well-being, employment, discrimination, stigma and resilience. The study will also look at peopleâ&#x20AC;&#x2122;s responses to the rapidly changing treatment environment, and subsequent shifts in their experiences at clinics and with their healthcare providers and aims to identify the current and future support and service needs of people living with hep C.

The primary objective of this research is to increase understanding of individual profiles that are associated with better Hepatitis C treatment outcomes.

Contact Simon Langston Bond University slangsto@bond.edu.au

Each interview will take approximately one hour and can be conducted face-toface if you live in Sydney or over the telephone at a time convenient to you. You can be reimbursed up to $50 per interview.

Contact Jeanne Ellard La Trobe University You will take part in three confidential research interviews. To take 02 9385 9496 or J.Ellard@Latrobe.edu.au or part you must have been diagnosed with hep C, live in Australia Sarah George and be over the age of 18.

Hepatitis NSW 02 8217 7705 sgeorge@hep.org.au

Image by Exposition by RAF

Looking for information about clinical trials for new and developing treatments?

clinicaltrials.gov hep.org.au / HEP REVIEW / 39

opinion

opinion @carlatreloar This year World Hepatitis Day followed hot on the heels of the Olympic-sized 20th International AIDS conference of 2014, held in Melbourne, July 20-25. As I wrote this, it felt as if the world was talking, debating and tweeting about HIV and AIDS. Of course, the tragic murder of conference delegates on MH17, coupled with the array of leading scientists, celebrities and global leaders who gathered in Melbourne, focussed the world’s attention once again on the global HIV/AIDS epidemic.

Professor Carla Treloar is the Deputy Director of the Centre for Social Research in Health at UNSW and head of the centre’s hepatitis research team

Why is it that people affected by viral hepatitis have not been able to emulate the great strides made by the HIV/AIDS sector in raising global awareness about HIV/AIDS? This is despite the force of numbers being with the viral hepatitis sector; for example, more than ten times as many Australians live with hepatitis infections than the number of people in Australia living with HIV, and the numbers of deaths attributable to viral hepatitis in Australia passed those attributable to HIV/AIDS years ago.

A number of factors work against a broader acknowledgement of the viral hepatitis epidemics. One key factor is the stigma associated with hep C, which is largely an outcome of the illegality of certain types of drug use. Voluminous amounts of research, including from our centre, highlight the significant burden of stigma that affected people experience as a consequence of the

40 / HEP REVIEW /

association of hep C with injecting drug use.

The world’s inability to come to terms with illicit drug use, and to implement alternatives to prohibitionist drug policies, contributes significantly to why the viral hepatitis sector lacks high profile activists who can mobilise popular and political support around the globe in the ways that occurred from the very early days of the HIV/AIDS epidemic.

The stigma associated with injecting drug use and hep C is a disincentive for movie stars, musicians, politicians, business leaders and other notable talking heads to step into the harsh glare of public opinion to advocate for a greater acknowledgement of the hep C epidemic. As such, hep C-related stigma and discrimination continues to have wide-ranging effects, such as inequality of access to bloodborne virus prevention strategies, health information, social support, and treatment and care for affected people.

“we all need to look at the bigger picture.”

The International AIDS Conference of 2014 was underpinned by commitments and public statements relating to stigma and discrimination because stigmatisation of people with HIV/AIDS is acknowledged as a key driver of the HIV/ AIDS epidemic in the 21st century. While we, too, can draw on research to show that stigma disrupts the health outcomes we desire for people with viral hepatitis, we all need to look at the bigger picture.

Work to reduce and redress all forms of stigma related to blood-borne viral infections is a priority in and of itself. It is undeniable that

some in our community feel that because they have viral hepatitis or HIV, they are not worthy of care and that others are more deserving.

These messages are received over and over again from multiple sources, including from health professionals who should instead be acknowledging and encouraging the steps that people take to protect their health.

However, there is some good news; the NSW Ministry of Health released its hepatitis B and hepatitis C strategies in September and the National strategies were released in early July.

This follows the NSW HIV strategy released for World AIDS Day in December 2013. These state and national strategies have, for the first time, provided us with ambitious targets to guide our work, particularly the challenging work required to address stigma.

There remains a lot to do. Most of us who do not live with viral hepatitis are not targets of

stigmatising attitudes and behaviours and so many of the material effects of stigma and discrimination are invisible to us. Therefore, we require close and trusting partnerships with people who live with or are at risk of viral hepatitis to open our eyes to the impact of stigma and discrimination.

It behoves all of us to talk about stigma, name it when we see it and make the aim of reducing its impact a core feature of the everyday framing of our work. ď &#x17E;

Got your own opinion on this?

We want to hear from you.

Join the conversation â&#x20AC;&#x201C; Twitter@hepatitisnsw Facebook Hepatitis NSW

hep.org.au / HEP REVIEW / 41

horrorscopes

HORRORSCOPE Aries

Leo

Sagittarius

Stop using butter on your bread this month so that if the bread falls, it’ll be lucky-sideup no matter what. This may mean you have to cut toasted sandwiches from your diet.

Zombies will stalk you and kill your animals.

Parrots can be annoying as well as beautifully coloured. Rawwr! Parrots can be annoying as well as beautifully coloured. Rawwr!

Parrots can be annoying as well as beautifully coloured.

Rawwr!

Your favourite sources of protein may dry up later this month, so remember to eat lots of lentils.

Taurus All the time you spent on learning French is never going to pay off. C’est des conneries!

Liven up your month by putting party balloons all around your desk.

Gemini You will be provoked by an angry echidna. Do not rise to it. You are a green bag and life is one big supermarket. Now you’re fully engrossed in that analogy, I want you to think of me as the store announcer.

“Clean up in aisle 12”.

That’s as exciting as it gets this month.

Cancer Hoping to find love in a takeaway shop just shows how optimistic you are. There’s no harm in taking the day off.

A new love will present itself today, grab it with both hands, in all possible places.

42 / HEP REVIEW /

Buying a T-Shirt proclaiming that your bald patch is a solar panel for a sex machine is a good idea.

Monsters plague your every move and will soon be here to eat your flesh.

Cat hair is an excellent source of breathing problems.

Virgo

Capricorn

Don’t trust little birdies, they’re renowned liars. Memory can often plays tricks on people – why not trick memory first by getting a lobotomy?

Your choice of reading material is starting to swerve dangerously into the “grey” section.

Make any important decisions regarding your future now.

Wear more sunscreen than usual, leatherback is not your look.

Libra

Aquarius

When ending letters this month, remember to append ‘xox’ to the end, especially if your letter is formal.

Parts of you feel like giving up the ghost today, and feeding those parts with icecream and bacon bits may finish them off.

Be sure to wear sensible shoes if going dancing. Steel caps prevent sore toes.

Scorpio Beware of people offering free screensavers – they want to steal the celebrity photos you illegally downloaded.

Dress for success this month, especially when going to bed.

Reality TV shows are not crying out for someone like yourself. The camera adds 10kgs of dislikable character traits and you should keep yours to yourself.

Pisces If you never liked sprouts before, try them again. Your tastes may have changed.

You’re lucky that your sign is known for being daydreamy, it means you get away with being out of it.

fun stuff

CROSSWORD 1

2

3

4

7

5

8

6

9

SPOT THE DIFFERENCE

10

11 12

13

14

15

16

17

18 19

20 21

22

23 24

ACROSS

DOWN

1. Largest organ in the body (5) 4. Approximately (6) 7. Prison ID number (acronym) (3) 8. Unit of measurement (liquid) (3) 11. Having the right to do or

obtain something (8) 12. European Christmas drink, egg- (3) 13. In the air, overhead (5) 14. Vehicle theft detectors (3, 6) 18. Host town to 2014

Australasian Viral Hepatitis Conference (5) 19. Do something (3) 20. Central Australia sacred site (5) 21. More than 4 alcoholic drinks (5) 22. Substance used to improve looks or strength (acronym) (4) 23. Legal service for people living with viral hepatitis or HIV (4) 24. Encounter (4)

1. Dodgy car, bad deal (5) 2. Salad dressing (11) 3. Absurd, silly (10) 5. Latin dance (5) 6. Preliminary version (5) 9. Sick (3) 10. Star-sign (3) 14. Painful involuntary contractions of a muscle 6) 15. Stone used in sculpture (6) 16. Wash or rinse freely with a stream or shower of water (6) 17. Opposes the established order (6)

Weâ&#x20AC;&#x2122;ve borrowed Spot the difference from Edition 17 of Transmission Magazine.

Spot 10 differences between the two pics Thanks TM! Find the answers in the online edition of TM 17.

Find the solutions at www.hep.org.au hep.org.au / HEP REVIEW / 43

CLINIC LISTING

C - Hep C treatment & monitoring B - Hep B treatment & montioring F - Fibroscan

MONITOR MANAGE TREAT

CLINIC

CONTACT

SERVICES

The Albion Centre Surry Hills

9332 9600

C

Bathurst liver clinic Bathurst Hospital

6330 5346 0407 523 838

Bega District Hospital Interferon Treatment Unit

6492 3255

B F* *fridays only

clinic highlight Holdsworth House Medical Practice Sydney (02) 9331 7811 Suite 4, Level 1, 32a Oxford St, Darlinghurst NSW 2010 Hours Sun Closed Mon 8am - 7pm Tues 8am - 7pm Wed 8am - 7pm Thur 8am - 7pm Fri 8am - 7pm Sat 9am - 1pm Holdsworth House Medical Practice Byron Bay (02) 6680 7211 37 Fletcher St Byron Bay, NSW 2481 Hours Monday to Friday 8:30am - 5:30pm Holdsworth House is a comprehensive GP medical centre.

They offer hep C monitoring and treatment.

44 / HEP REVIEW /

C

B F

C B

Hepatitis Infoline 1800 803 990 Info, support, referrals

Burwood Endoscopy Centre

9745 3988 C endoscopy@iinet.net.au

Canberra Gastroenterology Hepatology Unit

6244 2195

Canterbury Hospital – 9767 6372 Outpatients Liver Clinic legan@ med.usyd.edu.au Coffs Harbour Base Hospital – Hepatitis Treatment Unit

6652 5655

Coffs Harbour Sexual Health Clinic 916

6656 7865

Concord Hospital – Liver Clinic

9767 8310 melissa.kermeen@ sswahs.nsw.gov.au

C

Treatment through Bankstown Hospital Outpatients Clinic

B F

C

C F

C

B F

C F

CLINIC LISTING

C - Hep C treatment & monitoring B - Hep B treatment & montioring F - Fibroscan

CLINIC

CONTACT

Central Coast Hepatitis C Clinic

Centre for Addiction Medicine, Westmead

4320 2390 helen.blacklaws@ health.nsw.gov.au 9840 3462

MONITOR MANAGE TREAT

SERVICES

C

C

B F* *two days/month

clinic highlight The centre includes

B F

• Clinic 16 Royal North Shore Hospital

9462 9500

C

•

B F

• •

Clinic 33 Port Macquarie Community Health Centre

6588 2750 C hdc@midcoast.com.au

Eastern Suburbs Endoscopy Centre Bondi Junction

9387 6600 C paullgoodman@ gmail.com

Excel Endoscopy Centre, Campsie

9718 0041 C B excelendocentre@ gmail.com

Gosford Hospital – Endoscopy Unit

4320 2111

Gosford Hospital – Teaching & Research Unit (Wyong)

4320 2390

Holdsworth House Medical Practice – Byron Bay/Sydney

C

C

6680 7211 (Byron) 9331 7228 (Sydney)

These services are located in central Sydney and Byron Bay. Doctors at the Holdsworth House medical centre provide an extensive range of services including: •

Goulburn Community 4827 3913 Health Centre

B F* *one day/month

B F* *one day/month

*one day/month

C B

• •

B F*

C

Onsite dental centre Psychology services Allied health centre Medical research facilities

Sexual health check-ups and treatments Men’s and women’s healthcare Travel medicine.

The medical centre at Holdsworth House has established itself as a hub for urban and remote healthcare services.

Continues over

hep.org.au / HEP REVIEW / 45

CLINIC LISTING

C - Hep C treatment & monitoring B - Hep B treatment & montioring F - Fibroscan

MONITOR MANAGE TREAT clinic highlight The dental centre at Holdsworth House provides restorative, cosmetic and dental hygiene services.

Psychologists and psychotherapists situated onsite offer counselling and therapies, and our network of allied health practitioners provides a wide variety of complementary services in both Sydney and Byron Bay.

I MY 46 / HEP REVIEW /

CLINIC

CONTACT

John Hunter Hospital – 4921 3478 Hepatitis Service Tracey.Jones@ hnehealth.nsw.gov.au

Kirketon Road Centre (KRC) Kings Cross

9360 2766 phillip.read@sesiahs. health.nsw.gov.au

9722 8400 Lidcombe Hospital – Outpatients Liver Clinic

SERVICES

C B F

+ outreach clinics at Raymond Terrace and Cessnock

C

B* F *one clinic/month

C

6620 7539 mark.fuller@ncahs. health.nsw.gov.au

C B F

Liverpool Hospital – Department of Gastro & Hepatology

8738 4074 miriam.levy@ sswahs.nsw.gov.au

C B F

Manning Clinic

6592 9315

Lismore Liver Clinic

Treatment

referred to C B Newcastle

Taree Community Health Centre

Hepatitis Infoline 1800 803 990 Info, support, referrals

Narooma Community Health Centre

4476 2344

Nepean Hospital Outpatients

4734 3466 vincenzo.frageomeli@ health.nsw.gov.au

Nepean Private Specialists Centre

4722 5550

C

C B F

C

CLINIC LISTING

C - Hep C treatment & monitoring B - Hep B treatment & montioring F - Fibroscan

CLINIC

Northern Rivers Gastroenterology Lismore

CONTACT

SERVICES

6622 0388

nrgstaff@tpg.com.au

6392 8600 Orange Interferon Treatment Unit Orange Community Health Centre

Orange Base Hospital

MONITOR MANAGE TREAT

6369 3000

C B

C F

Is your hepatitis clinic or treatment centre located in NSW but not listed here?

C F

Prince Of Wales Hospital Liver Unit

9382 3100 cherie.raby@ C B F sesiahs.health.nsw.gov.au

Royal Prince Alfred Hospital AW Morrow Liver Clinic

9515 7268

St George Hospital – Hepatology & Liver Clinic

9113 3111 C B F Lisa.Dowdell@ sesiahs.health.nsw.gov.au

St Vincents Specialist Medical Centre Lismore

6622 0388 nrgstaff@tpg.com.au

C B

St Vincents Hospital – Viral Hepatitis Clinic

8382 3707 viralhepatitis@ stvincents.com.au

C B F

Sydney Clinic for Gastrointestinal Diseases

9369 3666

Wagga Wagga Hospital Hepatitis Treatment Unit

6921 2711

C B F

Contact us with the details and we’ll add you to our clinic directory!

C B

C B* *referred to

private rooms hep.org.au / HEP REVIEW / 47

CLINIC LISTING

C - Hep C treatment & monitoring B - Hep B treatment & montioring F - Fibroscan

MONITOR MANAGE TREAT

I MY

CLINIC

CONTACT

SERVICES

Westmead Childrens Hospital

9845 3989

C B

Westmead Drug and Alcohol Services

9840 3462

C F

Westmead 9845 7705 jacob_george@ Gastroenterology Hepatology Department wmi.usyd.edu.au

Wollongong Hospital Hepatology Unit

4222 5180

C B F

C B F

Check out our online hepatitis service directory at hep.org.au Shout out to Krista Zohrab (Clinical Nurse Specialist at Lismore Liver Clinic) and Karen Powley!

Karen cleared her hep C earlier this year – “It’s one of the best health actions I’ve taken for myself. It’s like a new beginning.”

Congatulations Karen!

Photo care of Hep Review’ Photocall project.

Find out more on page 22

48 / HEP REVIEW /

female

male

trans/Intersex

2. Carefully rip or cut out this page

6. Secure the top back edge (the shaded bit below) with sticky tape

hep.org.au / HEP REVIEW / 49

...............................................................................

5. No one will be able to see what youâ&#x20AC;&#x2122;ve written

m. Other (please describe)

1. Fill out the survey

l. Working in AOD (alcohol & other drugs)

k. Working in NSP sector

j. Person who used to inject drugs

i. Person who currently injects drugs

h. Community or youth worker

g. GP or allied healthcare worker

f. Ex-prisoner

e. Current prisoner

d. Person with hep B

c. Partner, family or friend of someone with hep C

4. Then fold this bottom part back along the bottom dotted line

b. Person who has been cured of hep C

3. Fold the top part of the page back along the top dotted line

a. Person with hep C

7. Please describe yourself (circle as many as you want)

.............................................................................

6. Are you Aboriginal or Torres Strait Islander?

.............................................................................

5. Is a language other than English spoken at home?

.....................................................................................

4. For the purposes of the prize draw, what is your first name and your contact phone number or, if you are currently inside, your MIN? (see conditions, page 49)

3. What is your postcode? (or prison code?) ............................................

2. What is your gender?

1. What is your age?

COMPETITION

Enter to WIN a $100 Coles/Myer gift card!

Itâ&#x20AC;&#x2122;s easy! Just give us your feedback to help us develop a better magazine.

For each edition we draw one winner from all entries received who have provided a name and contact number. Draw entry open to NSW residents only. Limit one entry per person.

Fill out the survey on this page and the next OR go to https://www.surveymonkey.com/s/HepReview TO SEND

7. Post the form in your nearest mailbox

8. Or fax both sides of this form to 9332 1730

1.

After reading this edition of Hep Review magazine, I feel I know more about hepatitis

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2.

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Since reading this edition of Hep Review magazine...

HEP REVIEW EXTRA FEEDBACK If you’re a regular reader of Hep Review we’d love to get some feedback on the changes we’ve made in this edition.

reader feedack survey

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After reading this edition of Hep Review (please tick) I’m likely to read the next edition of Hep Review

I have called the Hepatitis Infoline

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I have looked up the (www.hep.org.au) website I have looked up a different website in the magazine I have phoned one of the clinics listed in the magazine I have talked to someone else about hepatitis

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Please contact me for more feedback

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Congratulations and thanks to Tony - winner of $100 gift card for Edition 85

50 / HEP REVIEW /

If you have other feedback about Hep Review email hepreview@hep.org.au

HEP C CAN BE CURED

To find out about your options in prison, call the Hepatitis Infoline or visit the health centre

Hepatitis INFOLINE

FREE CALL

info, support, referrals

FOLLOW THESE STEPS TO CALL FREE ENTER MIN ENTER PIN NUMBER PRESS 2 FOR COMMON CALLS LIST PRESS 3 FOR HEPATITIS INFOLINE

Hepatitis NSW Working towards a world free of viral hepatitis

hep.org.au / HEP REVIEW / 51

www.mhahs.org.au

52 / HEP REVIEW /

The B Word

The B word Hep B

halc

I have chronic hep B, is there anywhere I can’t work?

If you’re living with hep B you can work most places, including childcare and healthcare.

There may be restrictions about the kinds of healthcare you can perform – depending on your viral status, you can’t perform “exposureprone procedures”.

If you are asked to disclose that you have hep B on a job application you don’t have to answer unless you are: • •

applying to join the army, navy or air-force applying for a job in which you would be performing exposure-prone procedures (putting your hands inside people’s bodies where you cannot see your hands – internal surgery).

If you are applying for a position with NSW Health you will be asked to provide proof that you have been vaccinated against hep B. You may also need to provide evidence that you know your hep B viral status with your application.

You can get more informationfrom the Hepatitis Infoline 1800 803 990

what can you do about discrimination or vilification?

If you feel that you have been discriminated against or victimised, you can make a complaint to the NSW Anti-discrimination Board or the Australian Human Rights Commission.

Complaints of vilification can also be made to the Board.

HALC can provide you with legal advice and representation to help you with your complaint.

CALL 1800 063 060

HIV/AIDS LEGAL CENTRE www.halc.org.au Image by Exposition by RAF

hep.org.au / HEP REVIEW / 53

hello hepatitis infoline

hello hepatitis

Hello Hepatitis Infoline is brought to you by the Hepatitis Infoline team.

The questions are based on real-life calls but details have been changed to protect caller’s privacy

INFO, SUPPORT, REFERRAL CONFIDENTIAL

1800 803 990

H

ello Hepatitis Infoline.

I’ve heard about new hep C treatments: interferon-free; shorter timeframe, fewer side effects, and clearance success rates of 95%+ … how do I get onto the treatment?!

Sam, 55

Hi Sam, thanks for your question it’s one we’ve been asked a lot lately!

There are new hep C treatments constantly in development. Some other countries are already prescribing the new treatments (sofosbuvir is available to many people in the US and there is restricted availability in the UK and Europe), however, in Australia, we still have a way to go: the government’s advisory group recommended against funding sofosbuvir in July so we will be campaigning hard over the next 12 months in an attempt to get sofosbuvir subsidised by the Australian Government Pharmaceutical Benefit Scheme (PBS).

In the meantime there are a number of clinical trials happening to further test new treatment regimens: including interferon-free, 12-week, daily tablet only medications. There is one trial set to occur within a prison setting (SToP-C) soon.

You can check out a list of all clinical trials at: clinicaltrials.gov You can search for what you are looking for: eg. hepatitis C Sydney.

To be accepted into trials you will need to be recommended by a hep C specialist doctor.

Check out the clinic directory on page 44 for your nearest specialist.

If you are considering treatment, you need to know your genotype and have a fibroscan test to get an idea of whether or not you have liver scarring. You may also want to think about the available supports you have to help get you through. The first step is to get a GP referral to your local liver clinic/hep C clinician to get the conversation started.

Sign up to our campaign for Equal Treatment Access to keep up to date on where we are at with access to new treatments, and to make sure that we are heard loud and clear: we need access now!

Go to www.hep.org.au/c-me/ You can help the campaign by signing up to our monthly newsletterThe Champion.

You’ll also be kept up-to-date with new treatment news.

Hepatitis NSW also offers HepConnect – a service to speak to someone who has been through treatment.

Call the Hepatitis Infoline on 1800 803 990 to arrange to speak to a HepConnect worker.

Have a question for Hello Hepatitis Infoline?

Send your question to info@hep.org.au or call the Hepatitis Infoline on 1800 803 990 54 / HEP REVIEW /

Like Hep Review?

HEP REVIEW MARCH - JUNE 2015 edition 87

Yes! (We hope) And we want to keep you happy!

Along with the changes to Hep Review there are changes coming to Hepatitis NSW membership.

From July 2015 to continue to receive Hep Review in the post you’ll need to be a Hepatitis NSW member.

Don’t fret! Membership will be free for people living with viral hepatitis in NSW and we’ll have great membership deals for professionals and people in other states.

We’ll be in touch with more information in early 2015.

“SOMETHING TO TELL YOU” Hep C & relationships The best hepatitis website in the state country WORLD! THEY SAY / BUT THEY SAY Treatment for some vs treatment for all SELF-HELP The rise of disease self-management amongst people living with hep C

hep.org.au hep.org.au / HEP REVIEW / HEP /REVIEW 55 / 55

Your liver needs you as much as you need it.

Show your liver a little Get a liver check every 6 months.

Call 1800 803 990 Hepatitis NSW Working towards a world free of viral hepatitis