Hep Review ED80

HEP REVIEW Edition 80

Winter

June 2013

py o c e e r F ake t e s a e Pl

Recent medicare listing of new treatment drugs for hep C page 9

HEPATITIS NSW - Working towardsHep atitis hep2013 Review magazine Edition 1 vir80al June free of rld a wo

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life is important:

the orange hospital auxiliary and Kite Street clinic story The divide between country and city is as old as Aesop. But while the town-mouse, country-mouse fable was a plea for greater understanding of our differences, the current divide speaks of issues around fairness and equity, writes Charlie Stansfield.

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ince the 2010 Federal election independent MPs Katter, Oakeshott and Windsor have reminded us there is a whole swag of people out there beyond the city sprawl who are paying taxes and, one would think, have rights to the kinds of health services we take for granted in our “big smoke” urban centres. Statistics show that people in rural areas experience poorer access to medical services; some enduring three week waits before getting in to see a GP or having to travel long distances for specialist appointments only available in the big smoke.

But many country people have no time for debates about the rights and wrongs of urbancentric politics, preferring to simply get on with fixing gaps where they can. As Tracey Wilkinson, President of the United Hospital Auxiliary in Orange put it, “it’s absurd that someone has to travel 6-8 hours to go to Sydney for some basic medical investigation – but since no one from the city is going to come here and help us, we have to work out how to help ourselves…”

Wilkinson heads up the 86 member strong community of volunteers (predominantly women) who operate a café at Orange Base Hospital, seven days per week. Families and friends visiting patients in hospital will stop by the café for a cup of tea, snack or meal, truly cooked and served with love. The hospital café attracts volunteers from young adults to those in their 70s and beyond and the roster includes hospital managers using their free time to give back. But as Wilkinson pointed out, the volunteer role is more than just plating up sausage rolls and cakes.

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“Many times people have come in for a cuppa and you can see they’re teary, sometimes we will go over take a seat beside them and exchange a few kind words or be a bit of a shoulder to cry on…”

Last year in addition to serving and supporting hundreds of visitors to the hospital, the goodwill of the United Hospital Auxiliary volunteers led to an astonishing $295,000 in profits raised from the cafe. All of the money is diverted to the hospital wish list for the purchase of medical equipment, administered by a Medical Instruments Committee.

“the goodwill of the United Hospital Auxiliary volunteers led to an astonishing $295,000 in profits raised from the cafe. All of the money is diverted to the hospital wish list for the purchase of medical equipment” Wilkinson has a seat on the committee and is part of a team with the unenviable role of prioritising the numerous requests every few months from all sections of the hospital. Examples of decisions made on her watch include anything from physio chairs to upgraded scanners. “When the new hospital was built two years ago, the Gynaecology unit required $50,000 worth of equipment before it was able to open – in stepped the Auxiliary.”

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hris Bennetts

Troubling though it is, that within resourcerich NSW, the purchase of essential medical equipment in one country region is dependent upon the daily acts of kindness of a bunch of good women and a few good men working in a hospital café, the knock-on effect of this committed volunteer labour transforms lives.

In August 2010, Dr Annie Balcomb of Clinic 96, Kite Street Community Health Centre, Orange Hospital, made an application to the Medical Instruments Committee for a Fibroscan machine.

By October 2011 it had reached the top of the priority list and was approved.

The Kite Street Community Health Centre combines drug and alcohol services, hepatitis C, opiate replacement and sexual health services in one location. As many readers would know, Fibroscan technology can deliver an assessment of liver health in a few minutes, far less invasively than traditional assessment via liver biopsy. After using a portable Fibroscan kindly provided by Prof Greg Dore (St Vincent’s Hospital) on one of

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his visits to the bush, Dr Balcomb immediately recognised the many benefits of providing her patients with an on-the-spot added assessment of chronic hepatitis C liver health.

“I have been staggered at how many people, when presented with the information and provided with support, can make dramatic changes to their lives. Even if they’re not undergoing treatment.”

Of course, the Fibroscan is only one part of a comprehensive case management service that engages with marginalised people.

“Many people assume drug users and those

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on opiate replacement programs don’t have high healthcare priorities; this stigmatisation permeates their interactions within society and, in many cases, travelling from Central West NSW to Sydney for basic monitoring tests is unfeasible.”

Unlike many overworked time-poor peers in general practice, Dr Balcomb acknowledges her patients’ need for best standard health care and offers hour-long appointments, with an open, non-judgmental approach that allows trust to build.

“I have been moved to witness so many stories of trauma just under the surface particularly from the men attending the clinic. These are men who in their younger years have often experienced horrific violence and emotional turmoil. One had several family members murdered; others have had some other complex trauma such as child abuse or death of a parent in their childhood. It’s trauma that often pre-dates the alcohol or drug use.”

The increased levels of support, which range from simple things like SMS appointment reminders, personal interest in clients, listening time and consideration of the individual, have led to outcomes that have inspired Dr Balcomb and her team.

“When he first came into the clinic, one man seemed a bit dishevelled, he had been drinking a case of beer every day since he was

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fourteen years old. He began to attend clinic appointments, had the assessments including Fibroscan, and that’s when we started to see subtle changes – he started to reduce his drinking, would turn up for appointments in his RM Williams pants all cleaned and ironed, after a few appointments, he went off and had some long overdue dental care, eventually he was able to stop drinking completely go through 48 weeks of treatment for hep C and cleared the virus.”

The support has enabled Ken to give up daily visits to the pub and to take up successful treatment for hep C. With the help of the new Fibroscan he could also be reassured that the treatment and lifestyle changes had reversed his early cirrhosis.

It’s true to say that technology is only as good as the people using it. So, it isn’t the Fibroscan in isolation that fosters these kinds of transformational changes in people. However, the delivery of the machine in December 2011 has brought services at Kite Street clinically on par with what is offered in the city.

feature Kenneth Cain, 57, from Canowindra has made the ten-hour return trek to Sydney in the past for liver assessment, relying on friends to take him.

He just accepted that was what he had to do.

However, since having treatment and care at the more accessible Kite Street Clinic he’s noticed a world of difference.

“They’re lovely people, Annie and her team feel like family.”

You wouldn’t often hear of a medical service being referred to as family, but Ken’s relationship with the clinic is such that if he finds himself in town (Orange) he will “always duck in and say hello.”

The support has enabled Ken to give up daily visits to the pub and to take up successful treatment for hep C. With the help of the new Fibroscan he could also be reassured that the treatment and lifestyle changes had reversed his early cirrhosis. Although he finds it hard to identify what it was the clinic staff said or did that helped him change, “after seeing them a few times, something in my head just clicked one day, and I was off the grog…I discovered also that the more I use my willpower the stronger it gets.”

it is that Dr Balcomb and her team are doing and saying to make such a difference.

My guess is that the communication that occurs at the clinic is similar to that happening every day on shift with the regular volunteers in the hospital café. It’s expressed in that moment when a volunteer sits down with a teary visitor, or when Dr Balcomb takes the time to gently ask the person in front of her about their life. It’s this kind of communication that fosters healing. The space, time, words and gestures that convey – regardless of where you live, or what you’ve done in the past – that you and your life are important.

That you matter.

• Charlie Stansfield is a freelance writer, counsellor and coach. Contact her on violettara@yahoo.com.

Brett Wilson, 51, tells of a similar experience, describing his contact with Kite Street Clinic as “a package deal...not just about the hep C...they give me hope.”

In the past, Brett – like Ken – had also had to endure the costs and inconvenience of travel down to Sydney “eight hours travel for a ten minute procedure” to determine liver health. He uses his experience of Fibroscan, treatment and Kite Street Clinic to educate others.

“There are a lot of people out there who still think you have to have a biopsy ... I’m trying to help get the message out that you don’t have to do that anymore”

“There are a lot of people out there that still think you have to have a biopsy – and they are scared of the biopsy – or they think you have to travel to Sydney for medical help and they won’t do that. I’m trying to help get the message out that you don’t have to do that anymore.”

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Image / Chris Bennetts

Brett

Both Brett and Ken frequently use words like “family” and “caring” when describing the Kite Street Clinic. Yet it’s hard to identify specifically what

editor’s intro

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his edition of Hep Review magazine carries great news – the Medicare listing of Incivo (telaprevir) and Victrelis (boceprevir). Thousands of people across Australia, living with hep C, now have access to these groundbreaking new treatment options.

If you have hep C genotype 1 and have been thinking about treatment, now is the time to start talking with your GP. For more information about new treatment options, phone the Hepatitis Helpline on 1800 803 990.

This edition also marks our new approach of carrying pictures of actual readers (thanks Ken and Brett). It’s our magazine so it makes sense to carry our pictures. For more info, check out page 43.

Going public about having hep C – or even having your picture in our magazine – isn’t something to be taken lightly. So if you do want to provide your story (see right) or send in a letter-to-the-editor, you can still be anonymous or use a made-up name.

Please enjoy this edition of Hep Review.

It marks 20 years of production a n d I hope you find it a great read.

keyhole to our work

An update on our advocacy work

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bviously, the biggest news since the last edition of the Hep Review was the announcement by the Health Minister, the Hon Tanya Plibersek MP, on 19 February that the Federal Government intended to list telaprevir and boceprevir on the Pharmaceutical Benefits Scheme. Those listings took effect on 1 April and they mean that these treatments are now paid for by the Australian Government, subject to monthly prescription charges payable by the person undergoing treatment.

This announcement followed a lengthy campaign from Hepatitis Australia, Hepatitis NSW, other state and territory hepatitis organisations and many other groups from right across the viral hepatitis sector.

At Hepatitis NSW we are particularly proud of the role played by our C me advocates in helping to keep up pressure on federal MPs to ensure these groundbreaking drugs were eventually listed. “Well done, advocates.”

ED 79 ReaderSHIP survey winner

Now that telaprevir and boceprevir have been subsidised, we are encouraging people living with hepatitis C, and especially those who may have had the condition for many years, to talk to your doctor about getting a referral to see a specialist to have a non-invasive Fibroscan liver assessment done. When you are informed about the progress of your disease, you will be in the best position to make a decision about possible treatments.

We’d like to congratulate Mark who was the lucky winner, chosen at random from the 22 readers who responded to our survey. We’ve sent a letter to you Mark, care of your MIN number.

There have been plenty of other developments in the advocacy space since your last edition of Hep Review.

Hepatitis NSW has lodged two submissions to state parliamentary inquiries into drug-related issues.

Weblink of the month

The first was a submission to the Inquiry into the use of cannabis for medical purposes. In our submission we recommended that the personal use of cannabis for medical purposes should be decriminalised, including allowing the personal growth of a limited number of plants or for supply through certified growers and producers.

Paul Harvey, Editor.

Having hep C means it’s even more relevant to get yourself and keep yourself healthy. Losing weight is not easy for many people but here’s a weblink to some down-to-earth practical advice on exercise. Finding the “best” exercise to burn fat is less important than keeping at it: http:// tinyurl.com/b2bdj96

Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.

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Continued on page 39.

Cover photo of Ken Cain, by Chris Bennetts of www.orangecitylife.com.au

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other readers want to hear your story “I have [received] your valued publication for many years and it helps me deal with my hep C. It continues to inform me, keeping me up to date with the progress in options for treatment. It helps me emotionally as I read and sometimes re-read the stories of others.

The encouragement that comes through your mag helps sustain me when things get low and I thank you. I even have articles that I found so incredibly helpful, ones I could closely relate to, that have cut out and kept.” RP, Tasmania

Letters

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Australian news

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World news

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Features Life is important: the Orange Hospital Auxiliary and Kite Street Clinic story

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Q&A: Where can I get a fibroscan test?

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Australians gain access to new medicines for hep C

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Don’t make doctors the health police

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Victorian doctor jailed for giving hep C to 55 women 22 C me community action on the Central Coast

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C me Treat Us Better bike ride

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C me community advocates geared up for even better media work 25 The wellbeing of younger Australians

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Hepatitis C: the cure?

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Justice Reinvestment Campaign for Aboriginal young people 32 In the field: a new hep B vaccination outreach clinic 40 Is family and peer naloxone distribution gaining momentum 41

Image / Google Images

My story

Hep Review magazine is a lifeline for many people; linking them to news, information, views and stories. We want the voice of people with hep C to ring loudly through the magazine.

Please consider sharing your story. Published stories attract a $50 payment. Your contact details must be supplied (for editorial purposes) but need not be included in the printed article. Articles should be roughly 400 words or 800 words, handwritten or typed.

• Further conditions apply. For more information, or to submit your story, please contact pharvey@hep.org.au Also see our call for photos on page 43.

Wayne’s story: Banishing the monster

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Shane’s story: Rockin’ on

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Shane’s story: A follow up

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Research updates Exposure to injecting and hep C among young people at risk 59 Impact of hepatitis and alcohol on liver-related deaths among people who inject 59 Liver cancer survival time tripled by modified smallpox virus 60 People with hep B die most often of hep B issues 60 New research into survival of HCV outside of the syringe 61 Tattooing poses increased hep C risk 61 Regular features Harm Reduction poster: injecting sites

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Hep Chef – Lamb and barley soup

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Hello Hepatitis Helpline – treatment in prison

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Pharmaceutical treatment for hep C

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Complementary medicine

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Support and information services

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Hep Review magazine

Edition 80

June 2013

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promotions

letters

ONLINE

Harm reduction in NSW prisons

chat Want to talk about anything hepatitis related?

You can now chat instantly with one of our Helpline workers via www.hep.org.au Just click the blue Live Support button at the top of the site, answer some confidential questions for our stats and you’re able to start chatting. There’s no need to sign in or download any new software. Simple!

I read the last edition and the claim that prisoners have access to Fincol is not true in all correctional centres.

In fact, in our case the opposite is true. For two years our wing has had a lemon disinfectant placed in the Fincol dispenser.

Prisoners seeing the yellow colour think they are dowing the right thing cleaning fits when infact they are putting themselves and others at further risk.

My pleas for change are ignored.

• Anonymous, NSW The above comments were provided in a Hep Review reader feedback form.

You can use the online chat service between 9am-5pm weekdays (except Thursdays when it is available from 1-5pm). The service provides free information, support and referral to anyone in NSW.

For info, support and referral online

>>

Hepatitis NSW has contacted Corrective Services NSW about this incident, expressing concern that Fincol should be available to all prisoners, in all locations across NSW.

Our online version of Hep Review can be found via www.hep.org.au and contains live links to the various sources shown in blue text at the end of articles. They’re another great reason to go online for your Hep Review magazine.

Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse support, lifestyle education, monitoring of side-effects and referrals to other services.

You will just need a referral from your local GP to attend the clinic. This is a great opportunity to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today.

• For more info, please contact Katherine McQuillan on 6330 5866 or 0407 523 838

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Image via Google Images

news Image courtesy of Google Images

we welcome access to ground-breaking Hep C drugs Australia – Hepatitis NSW welcomes the announcement by the Federal Health Minister, Tanya Plibersek, that the drugs telaprevir and boceprevir will be listed on the Pharmaceutical Benefits Scheme (PBS).

Hepatitis NSW CEO, Mr Stuart Loveday, said “These truly are ground-breaking drugs for the treatment of hepatitis C.” “Hepatitis NSW congratulates the Australian Government for announcing its intention to list telaprevir and boceprevir on the PBS, drugs which will significantly increase the chances of cure for people living with hepatitis C genotype 1.”

Until now, genotype 1 has been the hardest-totreat type of the hepatitis C virus (HCV). It is also the most common type of HCV in Australia – it is estimated that more than half of the 226,700 Australians living with chronic hepatitis C have genotype 1.

C me community advocate Warren Fahey was delighted that the new drugs will be publiclysubsidised and easily-accessible in the near future.

Mr Fahey said “Telaprevir and boceprevir can increase the chances of cure for genotype 1 from roughly 50% to between 70 and 80%.”

or, for those people who may have already tried treatment, to go through it again.”

Mr Loveday agreed that these listings make it a great time for people living with hep C to talk to their GP about their treatment options.

Mr Loveday said “Hepatitis NSW encourages people living with hep C, and especially those who have had hep C for many years, to talk to their doctor about getting a referral to see a specialist to have a Fibroscan liver assessment done.”

“When people are informed about the progress of their disease, they will be in the best position to make a decision about possible treatments.”

Mr Loveday concluded “We hope that the formal listing of telaprevir and boceprevir on the PBS occurs as soon as possible, because these drugs offer increased hope that people living with HCV genotype can be cured of their hepatitis.”

• Abridged from ahha.asn.au (19 Feb 2013) http://tinyurl.com/d8z85lu We can confirm that, yes, following publication of the above news item, the Federal Government did list the new drugs on Medicare on 1 April.

“That difference can be enough to motivate someone to go through treatment for their hep C

St Vincent’s viral hepatitis clinic St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, Sydney, offers treatment for hepatitis. Featuring a fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment.

• For further information, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au Image courtesy of Google Images

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news liver cancer man’s $350,000 payout New South Wales – A man dying of liver cancer has been awarded more than $350,000 because his GP failed to refer him to a weight-loss clinic or send him for lap-band surgery.

Medical experts say the case of Luis Almario is a legal landmark in NSW and will force suburban doctors to ensure overweight patients shed kilos or risk being sued.

Dr Emmanuel Varipatis, a Manly GP, is appealing the Supreme Court ruling.

Mr Almario, a Colombian-born former left-wing revolutionary and one-time candidate for State Parliament, was in the care of Dr Varipatis from 1997 to 2011. During that time he weighed 140kgs despite being just 154cm tall.

The court found Mr Almario had terminal liver cancer as a result of liver disease brought on by his obesity. He has been given 40 weeks to live.

In his verdict, Justice Stephen Campbell said when Dr Varipatis first saw his patient in 1997, Mr Almario was “morbidly obese and suffered from a constellation of other interrelated conditions, all affected by his obesity, including the liver disease”.

and a healthful weight been achieved by Mr Almario following surgery,” Justice Campbell noted.

He found Dr Varipatis negligent on three counts but the GP has appealed the decision.

Dr Adrian Sheen, a Penrith GP and president of the group Doctor’s Action, said the Supreme Court ruling would place an “intolerable burden” on the family doctor.

“This will force doctors to refer patients off for every test under the sun or fear being dragged into the courtroom. The cost to the health service will be astronomical,” he said.

“Where is this going to stop? We have a high standard of care in this country, GPs have a tough task as it is and this will make it impossible.”

Mr Almario was awarded $569,332 in damages discounted to $364,372 on a range of mitigating factors, including that a “reasonable person” would have taken the precaution of dieting.

• Abridged from smh.com.au (7 Feb 2013) http://tinyurl.com/b3rjbs8

“I am satisfied that but for the negligence of the defendant, the liver disease would not have progressed to cirrhosis and one could have expected a great improvement in his health generally, had bariatric surgery been successful,

If you are overweight, why not talk to your GP about your weight and how it might impact on your viral hepatitis. Also consider phoning the Hepatitis Helpline for more information.

For more on this story, see Don’t make doctors the health police, page 21.

Did you take part in the Australian Treatment Outcome Study ?

We are looking for people who were part of the Australian Treatment Outcome Study (ATOS), a study run by the National Drug and Alcohol Research Centre, looking at what treatments work best for heroin users in Australia.

ATOS started in 2001-2002 and most people had their first interview at a drug treatment service (e.g., at a methadone clinic, detox, or rehab) or at an NSP. These same people were interviewed again several times up until 2005. If you were in this study, some of the interviewers you would have talked to are Kath, Kate, Alys, Anna, Sandra, Ev and Nicky.

The study has been re-funded for an 11-year follow-up, and we are looking for the same people we interviewed between 2001 and 2005 to do another interview. If you think you were interviewed as a part of ATOS, please call Jo on 9385 0304 or 0477 426 503. The interview will take about an hour and you will be given $40 for out of pocket expenses.

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Continuing the push Talking hep Health for awareness on 3AW New South Wales – Wellington man Darren Ellwood says he is ecstatic that boceprevir and telaprevir are to be listed on the Pharmaceutical Benefits Scheme, but there’s a long way to go in his battle to share more awareness about the disease.

“I have a lot of passion for this and it’s good they are listening,’’ the Central West campaigner said.

Mr Ellwood believes people are “coming around”.

Wellington-based martial arts coach Phil Bennett will help raise awareness at an international fight night in Orange next month. The boxing ring card women will carry out a message on the cards which says “we are hep aware” and this will be showcased to 47 countries.

Victoria – A podcast of the recent two-hour show “Talking Health” on 3AW devoted entirely to hepatitis is now available. Hosted by Dr Sally Cockburn (aka Dr Feelgood), and guests Melanie Eagle (Hepatitis Victoria), Jacqui Richmond (Royal Melbourne Hospital) and Dr Sally Bell (St Vincent’s Hospital, Melbourne).

• Access the podcast by going to: http://tinyurl. com/crxtvgk

“I congratulated Phil so much when he told me he backed the awareness campaign that it brought me to tears,” he said.

Policy and Advocacy OfFicer at Hepatitis Australia

Mr Bennett, who coaches world-class Thai fighters based in Wellington, is a driving force for the cause.

Australia – Hepatitis Australia has recently appointed Kevin Marriott to the position of Policy and Advocacy Officer for a 12 month period.

“If you’re inspired...join the C me project as a Hep C Champion. We’re campaigning to ensuring effective action on hep C, and...eradicating viral hepatitis,” said Mr Elwood.

This new position will lead the development of national policy papers, position papers, discussion papers and submissions that reflect the needs of people living with viral hepatitis and those communities affected by hepatitis.

• Abridged from wellingtontimes.com (1 Mar 2013) http://tinyurl.com/abyn66e

• Hepatitis Australia, 20 Feb 2013

C me website: http://www.hep.org.au/c-me/

Do you live in the Eastern Suburbs and have hepatitis?

Are you looking for treatment?

The Prince of Wales Hospital Gastrointestinal and Liver Unit, in Randwick, Sydney, specialises in treating a broad range of liver-related conditions, with a large focus on hepatitis B and C. The nursing staff coordinate all aspects of patient care for people with chronic hepatitis including, education, antiviral therapy, follow-up, medical appointments, interdisciplinary referrals and Fibroscan assessments.

We also participate in a range of clinical trials offering new and innovative treatments to our patients. Other health care professionals that complement our service include Psychiatrist,

Clinical Psychologist, Dietician, Social Worker, and Clinical Research Physicians. There are daily outpatient medical clinics so waiting times for patients are minimal.

For more information, phone Shona on 9382 3800 or email shona. fletcher@sesiahs. health.nsw.gov.au

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news

Rehab, not jail, can reap rewards

Online tattoo and piercing kits risks

Australia – More than $110,000 could be saved per year per offender if non-violent Aboriginal and Torres Strait Islander offenders were diverted to drug and alcohol rehabilitation programs, a report

by Deloitte Access Economics said. A further $92,000 per offender could be saved in the longer term through lower mortality and better health, according to the report commissioned by the Indigenous Drug and Alcohol Committee of the Australian National Council on Drugs (ANCD).

Australia – Tattoo and body piercing parties could be breeding grounds for hep C. A major report released recently calls hep C the “silent pandemic” and warns its impact is “set to grow dramatically”.

Chairman John Herron said he hoped the report would spur authorities to take action through the Council of Australian Governments.

Dr Herron, who served as minister for Aboriginal and Torres Strait Islander Affairs from 1996 to 2001, said it did not make sense for Australian governments to spend $3 billion a year on prisons.

The report found that Aboriginal and Torres Strait Islander offenders were less likely than other offenders to be diverted by courts to drug and alcohol treatment facilities.

In 2009, just 10 out of 17,859 people diverted by courts to drug and alcohol treatment were Aboriginal or Torres Strait Islander.

Hepatitis Australia warns that people buying tattooing and piercing kits online could be unwittingly spreading the virus.

President Stuart Loveday said more research was needed, but that they do know the risky behaviours are increasing.

“You’ve got this situation where people are getting involved in tattooing parties and body piercing parties among themselves,” he said.

According to The Silent Pandemic: Tackling Hepatitis C with Policy Innovation, published by the Economist Intelligence Unit, very few Australians seek treatment for their hep C. Mr Loveday said new treatments offered a high chance of cure.

• Abridged from news.com.au (17 Jan 2013) http://tinyurl.com/corjnwu Silent Pandemic report: http://tinyurl.com/ cscqloc

In 2011, about 7600 of the 29,000 prisoners in Australia were Aboriginal or Torres Strait Islanders.

• Abridged from www.canberratimes.com.au (4 Feb 2013) http://tinyurl.com/czxcaro ANCD report: http://tinyurl.com/apef4kj

resource OF THE MONTH

Living with Cirrhosis: a guide for people with hepatitis-related cirrhosis

A booklet for people who have been diagnosed with hepatitis C related cirrhosis. Published by Hepatitis Australia, it contains information to help you manage your health and prevent further liver disease. Hepatitis Australia’s new edition is now available.

For free supplies across NSW, please use our faxback resources order form... http://tinyurl.com/7kctp25 or call the Hepatitis Helpline 1800 803 990

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call for more action Drug Law Reform Australia – A report by the Economist Intelligence party launched Unit in London warns hep C has become a “silent pandemic” that kills 350,000 people worldwide each year.

The impact of the disease was likely to increase as many people who contracted the virus reach the end stages of associated medical conditions.

Commenting on the report, Hepatitis Australia president Stuart Loveday said Australian health authorities were doing a good job to combat the disease but more action was needed, including stepped-up preventive measures.

“We would dearly love to see injecting equipment available more broadly because the primary needle and syringe programs are open only from nine to five and that’s limiting access and service,” he said.

“So we need expansion of outlets, we need more vending machines and the like. We need a proper look at what the impact of the drug laws in Australia is on blood-borne virus transmission.”

The ACT government has proposed a needleexchange program for Canberra’s jail but other states have not taken such action.

“Prisons are a hotbed of hepatitis C transmission,” Mr Loveday said.

“The need for a prison-based needle exchange is not just necessary in the Alexander Maconochie Centre [in the ACT], it is necessary in every prison,” he said.

• Abridged from smh.com (17 Jan 2013) http:// www.smh.com.au/national/hep-c-call-formore-action-20130116-2ctwb.html

Australia – A new political party hopes to put the issue of drug decriminalisation on the agenda at the upcoming federal election.

Greg Chipp, whose father Don was the founder of the Australian Democrats, launched the Drug Law Reform Australia party in Melbourne in March 2013. Mr Chipp says the party aims to reinvigorate the debate about drug laws in Australia.

“We believe the issue of drug law reform has been comprehensively ignored by the major parties and the best way of dealing with that is through the electorate,” Mr Chipp told AAP. He said he was disillusioned at the lack of interest in a report released last year by think tank Australia21, which argued the war on drugs had been lost and the tough law-and-order approach was doing more harm than good.

The report, written by a group made up of former federal law enforcement officers, health ministers and premiers, including current Foreign Minister Bob Carr, said the prohibition of the use of certain illicit drugs had failed comprehensively.

Mr Chipp said the party hoped to field senate candidates in every state at the September 14 election. The party needs to find 500 members in order to register as a political party with the Australian Electoral Commission.

• Abridged from news.com.au (3 Mar 2013) http://tinyurl.com/bjgdnmv http://druglawreform.com.au/

Also see page 18.

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Image courtesy of Google Images

news

Hawaii takes action in hep battle USA – Health officials in Hawaii have turned to regional languages in their continuing fight against hepatitis B and C. A new series of pamphlets are being made available in a variety of languages including Chuukese, Marshallese, Samoan, Tongan and Ilocano.

Hep Free Hawaii estimates that 46,000 Asian and Pacific Islanders in Hawaii have Hepatitis B and 23,000 have hepatitis C - both diseases are causes of liver cancer.

• Abridged from radioaustralia.net.au (13 Feb 2013) http://tinyurl.com/ce9xf6f Campaign: http://www.hepfreehawaii.org/

12 test positive for hep c after insulin pen concerns USA – At least 12 people have tested positive for hep C, after undergoing screening offered by Olean General Hospital because of the possibility that insulin pens were inadvertently reused, according to a report in the Olean Times Herald.

At least one former patient reportedly plans to sue the hospital system, after claiming to have been infected when injected with an insulin pen at the hospital last year.

Last month the hospital mailed 1,915 patients letters recommending they seek testing, after an internal review raised the possibility that some of them may have received an injection from another patient’s insulin pen.

Cattaraugus County Public Health Director Dr Kevin Watkins told the Board of Health this week that the recent testing revealed 12 people tested positive for hep C and one person for hep B, the newspaper reported.

But it’s not clear exactly how those people may have been infected. Both the commissioner and Olean General said the hospital “has not identified a single patient who ever received an insulin injection from another patient’s insulin pen.”

• Abridged from buffalonews.com (14 Feb 2013) http://tinyurl.com/bn4szns

Royal Prince Alfred Hospital liver clinic Royal Prince Alfred Hospital, Camperdown, Sydney, offers specialist services for people with liver diseases including viral hepatitis. Daily medical and nursing clinics provide liver health checks, fibroscan, IL28B gene tests, treatment assessment and management including access to newer therapies via clinical trials.

Image, source unknown.

The clinic also provides specialist care and treatments for people with advanced liver disease and liver cancer, and is home to the NSW Liver Transplantation Unit.

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Do you want to know more?

Please contact the following specialist nurses: Hep C – Sinead Sheils 9515 7661 or Sue Mason 9515 7049 Hep B – Margaret Fitzgerald 9515 6228 Liver Transplantation – Margaret Gleeson 9515 7263 or Fiona Burrell 9515 6408 Liver Cancer – Barbara Moore 9515 3910

news

Film Highlights Hep Research on Kids With Disabilities

nearly one in four villagers test positive

USA – “Willowbrook,” a film that highlights hepatitis research on disabled children during the 1960s, was screened as part of ReelAbilities, a festival that features disabilities in film.

India – Nestled deep within snow-clad mountains, the people of Takiya Magam talk in whispers.

They talk about a disease they know little about.

Of the 4,000 inhabitants of this village in south Kashmir, [one in four] have been found to have hep C.

The film is based on the Willowbrook State School for children with intellectual disabilities.

During the 1950s and 1960s, some children there were purposefully exposed to hepatitis for research.

The film follows a new doctor, Bill Huntsman, as he learns what the research patients endure for inpatient care and must decide whether he wants to participate. Huntsman’s superior, known only as Dr. Horowitz, explains that parents willingly give consent for hepatitis research on their children because they think they have no other choice. The non-research ward stopped taking new patients, but the research ward would take children in if they underwent a hepatitis injection.

Although neither director Ross Cohen nor screenwriter Andrew Rothschild had personal connections to Willowbrook, they stumbled upon it and were intrigued, Cohen said.

“The main ethical issue, apart from the fact that doctors are supposed to do no harm, is that the decision was not done freely,” said Cohen.

All of the children in the film, with the exception of the lead actor, actually had disabilities. They live in California with Ann Belles, who has adopted and parented 59 boys with disabilities since 1989.

She also runs non-profit and a supported living program for adults with disabilities.

Although all of the actors spent time with Belles’ children, no one spent more time with them than Zachary Winard, the actor who played Brian Sussman, a teen whose intellectual disabilities rendered him unable to speak. In the film, Sussman is a boy whose mother debates whether to sign the consent forms for hepatitis research.

• Abridged from abcnews.go.com (11 Mar 2013) http://tinyurl.com/byl3acd

The state Health Department has started screening the villagers and has already taken blood samples of more than 1,300 people [of which 300 have tested positive].

“We have sent the samples to the NCDC (National Centre for Disease Control) for genotyping to find the exact strain,” Director, Health, Saleemur-Rehman told The Indian Express. “As a precaution, we have decided to test all the villagers, and every day our team collects more than 100 samples.”

A four-member NCDC team has also arrived in Kashmir for an on-the-spot assessment and will try to find out the source of the disease.

Those with hep C include people from all age groups – from a boy of 12 to a 62-year old man.

The outbreak of hep C, a contagious lifethreatening liver disease that primarily spreads by blood-to-blood contact – largely through intravenous drug use, infected medical equipment or contaminated transfusions – was discovered by accident.

“A pregnant woman’s blood tests showed she had the hepatitis C virus. Similarly six other patients were detected when they went for tests for some other diseases,” said Ghulam Mohammad Mir, Takiya Magam mayor.

“When several of our patients tested positive for the disease at SKIMS (Sher-i-Kashmir Institute of Medical Sciences), the Health Department started screening in the whole village.”

• Abridged from indianexpress.com (4 Feb 2013) http://tinyurl.com/cr6fx29

Hep Review magazine

Edition 80

June 2013

15

news

Chinese hospitals urged to review unsafe practices

hep C breastfeeding lawsuit highlights low risk

China – The Chinese Ministry of Health urged local health departments and institutions to implement safer practices after 99 people contracted hep C after receiving contaminated injections at a private clinic in the city of Donggang in northeast China’s Liaoning province.

Canada – The risk of transmitting hep C through breast milk is “infinitesimally small” says a breastfeeding expert in the wake of a $3.2million lawsuit launched by an Edmonton couple whose baby was allegedly given breast milk from another woman with the disease.

The ministry deemed the scandal as a “major mass hospital infection incident caused by serious violations of medical regulations and procedures.”

“There’s very little risk of transmission of hep C. It hasn’t been documented. If a mother has hep C, we encourage her to breastfeed,” said Dr Shirley Gross, director of the Edmonton Breastfeeding Clinic at Misericordia Hospital, Alberta.

The clinic originally belonged to a public nonprofit medical institution. However, its surgery department was illegally leased to Xue Feng and Fan Peng.

The couple used new treatment methods in violation of normal medical practices to treat a total of 120 patients with varicose veins. Ninetynine people were infected with hepatitis C during the procedures, the circular said.

The ministry urged local health departments to strengthen supervision over the service quality and safety of local medical institutions. It also stressed a ban on illegally-posted medical advertisements and the contracting of medical work to other individuals and groups.

• Abridged from shanghaidaily.com (27 Feb 2013) http://tinyurl.com/au2cye2

Doctors might only be concerned about the possibility of transmission from a nursing mother if the woman was bleeding at her nipples, because the disease can be transmitted through blood, Gross said.

A lawsuit filed by Celeste and Jeffrey Fleming against Alberta Health Services and numerous health-care workers claims a nurse at the Royal Alexandra Hospital mistakenly fed their newborn son breast milk from another woman whose blood later tested positive for hepatitis C. • Abridged from edmontonjournal.com (19 Jan 2013) http://tinyurl.com/cdo92du In Australia, mothers are encouraged to breastfeed whether or not they have hep C. As a precaution, mums should temporarily stop breastfeeding if a nipple is cracked or bleeding.

The multi disciplinary Liver Clinic at St George Hospital, Kogarah, Sydney, supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer.

We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials.

For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 lisa.dowdell@sesiahs.health. nsw.gov.au

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www.hep.org.au

Image via Google Images

St George Hospital liver clinic

news

Exeter Hospital denies liability

hep c matchmaking in heaven

USA – Exeter Hospital is denying liability in the alleged criminal conduct of the former employee charged with infecting 32 of its patients with hep C.

USA – Gilead’s sofosbuvir with Johnson & Johnson and Medivir’s simeprevir are a match made in heaven.

The hospital and five other defendants are named in 26 local lawsuits in relation to the hep C outbreak.

“The hospital denies liability and maintains that it is not responsible for (David) Kwiatkowski’s criminal actions,” the motion states. “Specifically, the hospital maintains that at all times, it acted reasonably and responsibly, with appropriate regard for the health and safety of its patients, and in compliance with applicable standard of care.”

The hospital’s denial of liability in the summary statements has rubbed some the wrong way.

Attorney Jared Green of Abramson, Brown & Dugan malpractice firm, which is representing 13 of the hepatitis C victims, said he’s not surprised that Exeter Hospital is trying to distance itself from Kwiatkowski, but he doesn’t think it will be successful.

“We disagree strongly,” Green said. “We are very confident that Exeter Hospital is legally responsible for what David Kwiatkowski did, and we look forward to addressing that issue with the judge at the appropriate time.”

• Abridged from seacoastonline.com (31 Jan 2013) http://tinyurl.com/bra4naz

Interim data shows 100% of patients were free from hep C virus 12 weeks after treatment.

Patients were treated using either the two experimental drugs together, or both drugs and ribavirin. The results are especially impressive because these patients had already failed to respond to treatment with pegylated interferon and ribavirin.

While the trial will enroll 80 patients, only 10 have reached 12 weeks post treatment. Nineteen patients have been treated completely, and all of them were free of the virus at the end of treatment. Despite the awesome data, this combo therapy isn’t likely to ever see the pharmacy.

The trial was established before recent pharma company takeovers.

Gilead is planning on pushing on with a combination of sofosbuvir and drugs it has developed in-house. Fortunately for Johnson & Johnson and Medivir, simeprevir is being tested with additional hep C drugs, including Vertex’s VX-135, Idenix Pharmaceuticals’ IDX719 and Bristol-Myers’ daclatasvir. If any of those combinations can hit 100% efficacy and the partners can agree to produce a convenient combination pill, they should have a shot at taking on Gilead.

• Abridged from fool.com (5 Mar 2013) http:// tinyurl.com/bdmpoqe

Paediatric viral hepatitis clinic

Hep C and hep B can be passed on from pregnant mother to baby and occur in unknown numbers in children.

Children with hep B and hep C are usually well and often unaware of their infection.

Our Paediatric Viral Hepatitis Clinic will provide early diagnosis, monitoring, and in some cases treatment of children with these infections.

Assessment and regular follow up is essential to provide optimal care for these children to reduce the risk of significant liver disease in later life.

For information, contact Brooke Andersen at the Children’s Hospital Westmead, Sydney, on 9845 3989 or brooke.andersen@health.nsw.gov.au

Image via Google Images

Hep Review magazine

Edition 80

June 2013

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news

us Medical school settles over hep B claims USA – The US Justice Department has reached a settlement with a New Jersey medical school resolving complaints brought under the Americans with Disabilities Act that the school had unlawfully rejected two applicants with hep B. The University of Medicine and Dentistry of New Jersey agreed that it should not have excluded the applicants, who have not been named, the Justice Department said in a statement.

The settlement agreement said the school, which is a public institution, had made its decision based on a “misimpression” that the students would be required to perform invasive procedures.

Both students had applied to the osteopathic medicine program and one had also been accepted into the medical school.

The settlement papers said the school agreed to adopt a new disability rights policy that will make it clear that applicants with hep B can be admitted. The school will pay each of the applicants $37,500 in combined cash and tuition credits in compensation.

The Justice Department noted that both of the students are Asian-American Pacific Islanders, a population that accounts for 50% of Americans with hep B. • Abridged from thomsonreuters.com (5 March 2013) http://tinyurl.com/cbkbrj3

Norway set to allow heroin smoking Norway – Health Minister Jonas Gahr Støre, claiming that the heroin overdose rate in Norway is shamefully high, wants to allow people with a heroin dependence to smoke the drug under controlled circumstances. Støre has full support for his proposal from the rest of the government.

Norway has long ranked at or near the top of lists measuring overdose fatalities in Europe.

“The means by which addicts take their drugs is important in preventing overdose. My opinion is that we should allow them to smoke heroin.

Injecting it is worse and more dangerous.”

Støre thinks that if more addicts smoke the drug instead of injecting it, the risk of hepatitis and HIV would decline as well.

Støre launched what some are calling an “historic liberalisation” of Norwegian drug policy. It was warmly welcomed by spokespersons for Norway’s addicts including Arild Knutsen, leader of a national association for humane narcotics policies.

“Støre’s move marks a breakthrough and will save many from an overdose,” Knutsen said.

The government will call for liberalization under controlled circumstances. Støre said it would be up to local municipalities to provide the controlled circumstances, such as “smoking rooms” in facilities that have provided clean needles.

• Abridged from newsinenglish.no (1 Mar 2013) http://tinyurl.com/cvrta7j

Lismore Liver Clinic We provide a free public clinic specialising in hepatitis C & B. The clinic is run by nurses working with Specialist doctors to provide assessment, information and treatment.

If you have hepatitis C or B please come and see us. We can provide free access to a Dietician for nutritional support and also to a Counsellor to Image / Mark Fuller assist you prepare emotionally for treatment and identify the social supports you will require.

Please get in touch with us on 6620 7539

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www.hep.org.au

feature Q&A: where can i get a FIbroscan test?

The current list of clinics able to do fibroscans includes Concord, Cumberland, Justice Health, Liverpool, Nepean, Newcastle (John-Hunter), Orange/Bathurst, Prince of Wales, Royal North Shore, Royal Prince Alfred, St George, St Vincent’s, The Canberra Hospital ACT, UNSW at St Vincent’s, Westmead, Wollongong.

There’s also one private gastro clinic in Sydney that has one.

In NSW the best place to check is the Hepatitis Helpline. We regularly update the listing and, if you are overweight, we can tell you which clinics have the suitable machines.

For more info, call the Hepatitis Helpline on 1300 437 222 (local call costs from landlines)

Healthy Liver Clinic every Tuesday 10am - 12pm @ KRC ‡ ‡ ‡ ‡ ‡

Information about hepatitis C transmission and prevention Hepatitis C testing and monitoring Fibroscan referral Specialist treatment Doctor, nurse and counsellor available

Kirketon Road Centre (KRC): Above the Darlinghurst Fire Station, entrance on Victoria Street, Darlinghurst 2010 Phone: (02) 9360-2766

There’s a lot you need to know about hepatitis C - like the fact it can be treated!

Nepean region Liver Clinic We provide a range of services for persons and families affected by hepatitis B and C. We assist with the assessment and treatment of viral hepatitis. We have a fibroscan machine and satellite nursing clinics are held at Lithgow and Blue Mountains hospitals, including opiod substitution clinics. Services are also provided at Mt Druitt Aboriginal Medical Service. We can also provide possible access to clinical trials.

Image / Google images

• For more information, contact Vince on 4734 3466

Hep Review magazine

Edition 80

June 2013

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feature

Australians gain access to new medicines for hep c Hepatitis Australia applauds the recent Pharmaceutical Benefits Scheme listing of new drugs to treat hepatitis C. Two new medicines are being made available by the Federal government to help tackle the rapidly rising burden of disease stemming from longstanding hepatitis C infection.

Boceprevir and telaprevir, when used in combination with the current treatment regime, increases the cure rate to around 75% for those with the most common and difficult to treat strain of the hepatitis C virus. The medicines also have the added benefit of allowing the usual 12-month treatment period to be halved for many people.

“Boceprevir and telaprevir are the first new advances in hepatitis C treatment in over a decade, and these innovative new medicines offer a significant opportunity for those who urgently need treatment to achieve a cure, even if they have been unsuccessful with hepatitis C treatment previously,” said Helen Tyrrell, Hepatitis Australia Chief Executive Officer.

Hepatitis C is the primary, underlying reason for liver transplants in Australia and has overtaken HIV as the number one major cause of death from a blood-borne virus.

Underlining the urgency around making the new treatments accessible, Ms Tyrrell stated that long-standing hepatitis C infection is a major and increasing public health burden which already affects over 225,000 Australians.

“There are people with hepatitis C who need these new hepatitis C treatments without delay in order to avoid developing severe liver disease, or liver cancer. We therefore welcome the announcement by Minister Plibersek today stating the Federal government will allocate funds to make these two award-winning new hepatitis C medicines, boceprevir and telaprevir, available on the Pharmaceutical Benefits Scheme,” Ms Tyrrell said.

Warren Fahey, who has been living with chronic hepatitis C for decades and has unsuccessfully undergone treatment twice already, is relieved that the medicines will soon be available in Australia.

Mr Fahey said “Without a liver health assessment it is hard to know how urgently you need treatment, as hepatitis C symptoms can be mild for many years, even though liver damage can all the while be silently developing. Many people put hepatitis C treatment to the back of their mind because they don’t feel ill.”

“These new medicines are a great advance, and I would urge everyone with hepatitis C to actively start preparing for a cure. The first step is to make an appointment with your doctor to arrange a liver health assessment and have a discussion about the new hepatitis C treatments.”

• Hepatitis Australia, 19 Feb 2013.

Images / Google images

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www.hep.org.au

feature

Don’t make doctors the health police

THE negligence case against Sydney GP Dr Emmanuel Varipatis is still stirring up controversy. Assistant Professor WENDY BONYTHON, from the University of Canberra law school, discusses its implications.

T

he NSW Supreme Court recently awarded a morbidly obese man $364,372 in damages for developing terminal liver cancer as a consequence of his doctor’s failure to refer him for bariatric (lap band) surgery. (See news item, page 10).

The decision has reignited the war of words between courts and medical practitioners, including claims of defensive medical practice and spiralling medical costs.

It also raises the question of whether doctors can expect their patients to take responsibility for their own health. Or does every doctor or healthcare worker need to repeat general health warnings, even if the risks are obvious?

Medical negligence

Medical negligence requires that defendant doctors failed to respond to risks they should have foreseen, in the way a reasonable person in their position would. It also requires that, on the balance of probabilities, their conduct caused the harm suffered by the plaintiffs.

Almario v Varipalis

In the recent Supreme Court case, plaintiff Luis Almario had a long history of health complaints, including abnormal liver function, at the time he started consulting Dr Emmanuel Varipatis. Some of his problems were aggravated by his obesity.

Other doctors had counselled Mr Almario about his weight and referred him to specialist weight management programs with mixed success prior to his first visit to Dr Varipatis.

Mr Almario sued, claiming his liver cancer resulted from the doctor’s failure to address his weight problem. Although the evidence showed Dr Varipatis discussed the plaintiff’s weight with him during their relationship, the court found the discussion had not directly associated failure to lose weight with progression of the liver disease to cancer. And advising Mr Almario to lose weight, without providing further support, was insufficient.

The doctor’s conduct fell short of “a reasonable person’s” in three ways: failure to refer Mr Almario for assessment for gastric banding surgery; failure to refer him to specialist weight loss support services; and failure to refer to a specialist

hepatologist as the patient’s liver condition deteriorated but before he developed cancer.

Dr Varipatis was only found liable for his negligent failure to refer Almario for bariatric surgery assessment, which was a “necessary condition” of Mr Almario’s progression from liver disease to cancer, in spite of the possibility that Mr Almario may not have been suitable for surgery, may not have complied with the postoperative requirements, or may not have been able to afford the procedure.

Expert witnesses were divided as to whether bariatric surgery, then a relatively new and untested procedure, was sufficiently recognised as a treatment option for the plaintiff’s type of liver disease.

What does it mean?

The decision imposes on doctors the burden of exploring every possible treatment option that might have benefits to their patient, regardless of its chance of success. It also requires that they do more than just counsel patients about lifestyle modifications – how much more, or what would be sufficient in the case of an obstinate patient, is not clear.

Presumably it would require doctors to follow up when patients are provided with referrals to specialists, other clinics, or for tests such as imaging or pathology, to ensure they keep their appointments. The burden of practising this type of defensive medicine is enormous, and it will substantially reduce the affordability of healthcare.

Patients have the right to make their own decisions, with those decisions being respected by healthcare providers and the law. Likewise, patients cannot abdicate responsibility for the consequences of their decisions. Doctors should not be forced into policing the choices of their patients. To do so denies patient autonomy and forces doctors into the role of health police.

• This article was originally published in The Conversation. www.theconyersation.edu.au Abridged from Australian Doctor, 22 Feb 2013.

Hepatitis NSW does not endorse or reject this opinion piece. It is simply put as one opinion following the news item on page 10.

Hep Review magazine

Edition 80

June 2013

21

feature

Victorian doctor jailed for giving hep C to 55 women A doctor’s breach of patient trust results in transmissions of hep C and puts the spotlight on Victoria’s medical board, writes AAP’s Patrick Caruana.

J

ames Latham Peters will spend at least a decade in jail, [for infecting 55 women with hepatitis C].

The women were all patients at a Melbourne abortion clinic where the anaesthetist worked, despite being a known drug dependant.

Victorian Supreme Court Justice Terry Forrest said Peters had abused the trust of 55 vulnerable women and caused them to suffer needlessly.

“The physical damage caused by your conduct and the associated emotional harm cannot adequately be described by me in words,” he said.

“You breached the great trust that every patient places in his or her treating doctor,” he said.

Peters injected the women with the same needles he used to give himself doses of the opiate Fentanyl at a Croydon abortion clinic in 2008 and 2009. The women now [potentially] face an increased risk of suffering cirrhosis of the liver and liver cancer.

Justice Forrest sentenced Peters to 14 years in prison, with a non-parole period of 10 years, after he pleaded guilty to 55 counts of negligently causing serious injury.

The sentence is short of the 16-year jail term recommended by prosecutors.

Outside court, Slater and Gordon lawyer Julie Clayton told reporters there were still unanswered questions.

“How could this be allowed to happen in Victoria in the 21st century?” she asked.

“Why was this man allowed to practice unsupervised without any restriction on his licence?”

Ms Clayton, who is leading a class action against Peters, the clinic and the Victorian Medical Board, said the sentence would help some of the victims move on with their lives.

Justice Forrest said the medical board deserved criticism for its failure to monitor Peters’ addiction.

The board had suspended Peters in the 1990s for issuing false prescriptions for his wife, but he returned to practice under supervision from 1997.

That year, he informed the health department that he had hep C, but the medical board was not informed.

Justice Forrest said the board’s shortcomings did not reduce Peters’ moral culpability.

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www.hep.org.au

Image / isafmedia / flickr

• Abridged from smh.com.au (7 Mar 2013) http://tinyurl.com/b3dvp5f

feature

Hepatitis C: the cure?

As usual, hepatitis C was nowhere near the main stage. The elders of the American Association for the Study of Liver Diseases – the AASLD – had put the disease in its accustomed place: the upper floors and smaller meeting rooms of its enormous, annual research conference.

Sam Knight reports on one presentation that dropped jaws.

O

ne look at the program told conference-goers that a session “HCV: Refining the Use of Direct-Acting Antivirals” was going to be mobbed.

Dr Ed Gane, a 51-year-old hepatologist and transplant specialist from New Zealand, arrived about 10 minutes before it was due to begin.

“It was packed to the gunwales,” he told me.

Conference staff began setting up a video link to adjoining rooms to cope with the spillover.

At about 4.30pm, Gane stood up to present his data. Like the other speakers, he had a 15-minute slot. By this time, three adjoining conference rooms had been filled, so he had a total audience of about 2,000 scientists – almost a quarter of the entire attendance at AASLD – but he could only see the few hundred standing and sitting in front of him. Among them was Professor Graham Foster, a leading British expert on hep C. A member of Pharmasset’s advisory board, Foster had seen the results a few weeks earlier. “It really was a jaw-dropper,” he said.”

Gane began to click through the slides. He trotted through the design of the trial. The 40 patients on ELECTRON had been divided into four groups.

Three groups of 10 patients had taken PSI7977 in various combinations with the standard treatment of interferon and ribavirin. A fourth group had taken PSI-7977 and ribavirin alone.

The shock showed on the faces of the delegates as they drifted out into the hallways. “Everyone knew – this is a cliché – but everyone knew this was a new dawn,” said Dore, the Australian doctor. Clinicians were delighted, but conscious that many things could still go wrong. Drug developers from rival companies were frankly panicked. Everybody’s world shifted a little on its axis.

Jason Grebely, a colleague of Dore’s, who arrived after the presentation, remembers wandering into a quiet, stunned crowd. “Everybody was dumbfounded,” he said. “We spoke to pharma people ... and they were just, ‘Oh, whoah. What just happened?’”

Some decided that they had just witnessed the cure to hep C. On 21 November, 15 days after Ed Gane’s presentation, Gilead Sciences, a US pharmaceuticals company, agreed to buy Pharmasset – effectively the PSI-7977 molecule – for $11.1bn.

“The fundamental problem has gone,” Foster decided. “We know how to do this.” Along with the thrill for patients, this knowledge brought with it a secondary, much more subtle feeling, of being part of a huge, collective, intellectual enterprise that was now, rather suddenly, going to end.

• Abridged from ft.com (15 Mar 2013) http:// tinyurl.com/bwuavqr Image / Google images

After just three months of treatment – as opposed to six months, or a year – all 10 patients in this group were cleared of hep C. In medical language, their “sustained virologic response”, or SVR, was 100%. Gane clicked through to the next screen. At six months, long after their treatment had stopped, their SVR was the same: 100%. No one had relapsed. The drug had worked. There were no reported side effects.

“You could hear a pin drop in the auditorium,” Greg Dore, another hep C doctor, from Sydney, told me. Dore was standing against a wall.

“People were just absolutely amazed by what they were seeing.” Gane finished his presentation by thanking his patients. The room broke into applause.

Hep Review magazine

Edition 80

June 2013

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feature

c me Community action on the Central Coast

U

ntil recently Nigel Spence has overseen the running of seven martial arts schools, so he’s used to having a carefully controlled fight on his hands.

More recently, the fight that he has taken up is that of the Treat Us Well – Treat Us Better campaign.

Nigel is living with hepatitis C. Like many people diagnosed with hep C he was initially bombarded with a myriad of feelings, concerns and issues.

But these all paled into insignificance when he thought of his future with his children if his health slowly declined with cirrhosis and the real possibility of liver cancer. Nigel undertook treatment with pegylated interferon and ribavirin but the virus did not clear.

“When the treatment failed it took me nearly two years to be able to allow myself to make anything like long term plans. I have always been physically and mentally fit and strong, and eaten well but despite my best efforts my liver is not in a good way so I still don’t make long term plans. I felt shattered when I realised I might not be around for my kids, let alone grandkids and certainly for not as long as I always thought.”

Meeting with the Federal member for Robertson as well as an advisor to Jillian Skinner, the NSW Health Minister, is one of the ways that Nigel is fighting back, taking the message to decisionmakers about why listing the new treatments on the PBS would make such a difference to Nigel and thousands of other Australians living with hep C genotype one. Nigel has spread this message across the electorates in his region and has been in touch with his state members as well as the major candidates from other parties.

If you’re interested helping with advocacy in your Local Health District or finding out about the Treat Us Well – Treat Us Better campaign and the fight to get access to the new drugs, send an email to campaigns@hep.org.au or call 02 93321853.

• Abridged from The Champion Hep C Community News, Feb 2013. http://tinyurl. com/d2m3wbk

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www.hep.org.au

c me Treat Us Better bike Ride

C

me Community Advocate Darren Ellwood recently completed another awarenessraising bike ride aimed at keeping media attention focused on the need to get Direct Acting Antivirals boceprevir and telaprevir funded through the PBS as soon as possible.

Darren left home in Wellington on Sunday 6th January and rode 100km to Orange in one day.

On Monday 7th in 41 degree heat (equivalent to 50 degrees when reflected off the road) he rode through Bathurst to Lithgow where he took a well deserved break. Darren’s ride was covered by local media including Orange PhotoNews, Orange Advocate and the Wellington Times.

The exceptional heatwave of mid-January stopped Darren’s progress for a time, but he was back on track within days to make appearances in Sydney and Wollongong where he hooked up with C me Community Advocate for Illawarra Shoalhaven Mick Fernandez to generate some media attention and get hep C back in the news.

Darren cleared his hep C through treatment five years ago but there are still 225,000 other Australians, including his mate Jackie from Wollongong who are still living with hep C. Thanks to the campaigning efforts of Darren and others like him, new treatments are now available in Australia.

The Therapeutic Goods Administration passed boceprevir and telaprevir as safe to use and the PBS Advisory Committee recommended listing on the PBS back in July 2012. The drugs have now been approved for subsidised access from 1 April, 2013.

Darren is pleased the Federal Government put its money where its mouth is and backed the recommendation provided by its own advisory committee so that people like Darren’s mate Jackie can access an effective cure for this debilitating disease before it causes cirrhosis or liver cancer.

• Abridged from The Champion Hep C Community News, Feb 2013. http://tinyurl. com/d2m3wbk

c me Community Advocates geared up for even better media work

feature

Recent training has given your C me Community Advocates valuable media skills and confidence, reports project coordinator, David Pieper.

D

ealing with media is a vital part of advocacy, but sometimes can be a bit scary. From across NSW, thirteen C me Community Advocates came to Sydney in early February for an intensive weekend of training.

Before the training several delegates were nervous about appearing in front of the media, but after the weekend they said goodbye to their fears as they learnt from the experts about how to deliver their message effectively and with confidence.

C me Community Advocates are people with lived experience of hep C who are trained with the skills to enable them to advocate on behalf of themselves and other members of the communities affected by hep C. They learn how to use their personal experience as an advocacy tool; work with other affected individuals, and affected communities; and advocate for hep C issues within formal decision-making structures.

The media training day covered issues such as: understanding what makes the news, how journalists find stories and how hep C is covered by news media. It also included community action on hep C, an introduction to advocacy and health consumer representation. They practiced writing and using their own media releases. Using the PACE formula (Preparation, Approach, Control, Expression) they developed useful techniques for handling media interviews.

Advocates were thrown into the hot seat with practice radio interviews to help develop their confidence and skills. They received individual feedback as well as comments from the other Advocates.

Coaching by experienced journalists Delegates were coached by two experienced journalists who helped them to build skills in writing media releases and conducting radio and television interviews in a positive and confident manner.

Lynette Simons has been a media skills trainer for a wide range of organisations in the public and private sector. She was Training Manager at SBS Radio where she developed and supervised the provision of courses in ethics and standards, broadcasting, voice presentation skills and journalism.

Don Palmer has worked as a presenter, anchor and interviewer for a range of media networks as well as directing and producing more than 30 documentaries. He has worked on programs for the ABC, SBS and BBC. Don lectured in television, print journalism and public relations and helped train some of Australia’s foremost journalists and presenters.

C me is an evolving project that aims to recruit hundreds of “Local Champions” in local communities across NSW. • If you’re interested in being a Local Champion, contact David Pieper on 02 9332 1853 to be connected with your C me Community Advocate in your area. www.hep.org.au/c-me/

Finally, the C me Community Advocates were filmed in a live TV-style interview where they practiced their responses to a series of challenging questions and attempted to get their point across, while the interviewer pursued a line of questioning focused on his own agenda.

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Hep Review magazine

my story

wayne’s story: Banishing the Monster

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recently had to fight a medical monster. I had a relic from my wayward youth called hepatitis C. When I had the chance to be treated, and hopefully cured, of this reminder of my younger wayward years, I went for it.

I explained to my manager the seriousness of the situation and the fact I would be running at less than optimum performance levels. I was assured I was a valuable part of the team and he would be happy to support me through my treatment. Cool.

It is a dual attack treatment with pills morning and night, and an injection once a week. The injection is the worst bit as it hits me pretty hard. I feel like shit soon after the jab, but it recedes as time goes by, leaving me feeling slightly better as the week goes on. Only to face the knowledge I have to do it all over again. This is why I refer to it as a monster, as it lives in the fridge, just waiting till its time comes around to make me miserable all over again. So I think monster is an apt name for it.

As it turns out, though, there was more than one monster to battle. The drugs and their side effects was the easy monster, the harder one to deal with was my own head. The state of my head was one of the side effects of treatment, and knowing that should have helped me to cope. Around the time of my treatment I also had to deal with my brother (and partner in crime) losing his battle with cancer.

It was with him I contracted the virus in the first place, so there were a lot of conflicting emotions in play. Then it was my mum’s turn to lose her ongoing battle with the big “C”. Another funeral and more financial stress, as my family lives in NZ. Add in midlife issues on top of treatment and a shrinking family and it is no wonder I felt as though I was losing my mind. Let me tell you, it is no fun to realise you don’t trust yourself, that what confidence you had has up and left.

And so I realised I was fighting another monster, one who had ridden in on the coat tails of the first monster. So there I was, battling my monsters on a daily basis, managing to keep getting myself out of bed and face work. My boss had told me I was a valuable member of the team and the company was supportive. Call me naïve if you like but I believed him. He knew about everything going on in my life, and still he did what he did, which was nothing.

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“Depression is insidious.

It gets into every aspect of your life, no exceptions” Nothing to support me or fight my case for me.

The GFC hit, and work started to dry up. I was let go in the first round of redundancies. I was just finishing my treatment, at my lowest physical ebb, and at my lowest point psychologically. He knew all this and didn’t give it a thought when it came to deciding who to let go. Now I knew that not all monsters look like monsters. Some are just regular Joes who don’t think beyond their own short term goals. He left the company shortly after to go to another job on better money. No skin off his nose. No thought at all to the outcomes of his decisions. I thought he was a man of his word, I was wrong. My mistake.

Time to reassess this thing called life, or at least my strategies to deal with it. If all these goings on were beyond my control, what control did I really have? Mmmm, not a lot on the face of it. Except for the fact I could still choose my response to any and all of these trials life was throwing at me.

This was my “aha” moment. If I could still choose how to respond, then I still had some control. But even this takes work, as our default settings are pretty strong and it takes focus to make good choices.

my story

life.

Time was all I needed to beat the first monster. The second monster (depression) is an ongoing battle, but one I am going to win. I am now clear of the virus and any lingering side effects are long gone. I aim to make good use of my second chance at a healthy

My advice to those with monsters to fight?

Pick your fights carefully, then fight hard.

Believe in yourself and the resilience of your spirit. Life keeps on coming at you so look for the good bits and enjoy the trip. And keep smiling – it makes them wonder what you’re up to.

• Wayne Thacker, WA. Reprinted with permission from hepatitisWA Newsletter, Issue 02/Dec 2012 http://tinyurl.com/awfh3vr

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Image / Felicia Bradley

And that is the key. With good choices you can battle any monster, even the ones that beat you down. Like the nagging voice in my head that was always planting seeds of doubt and trying to find reasons why I would fail. I worked out that if I kept my mind busy with other things the voice didn’t get a word in. An easy choice to make then, stay busy or go into the black.

I will better guard myself against the monsters that lurk in life, in all their myriad forms. I have battled my medical monster and won. The virus has been banished and my head begins to clear. My world is still a little dark, but then it probably always was, but I can see a little clearer now and life is not so grim. I am a lucky man to have made it this far in life and I am grateful to all who helped.

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the wellbeing of younger australians Formal education is about more than just academic achievement; students are also prepared for living in society, for leading healthy and safe lives, and for dealing with problems and issues they will face, writes Adrian Rigg.

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ducation is one of the most important and valued aspects of Australian society. There is almost no limit to the education a person can gain throughout their life if they choose; there is, however, a minimum level of education that is provided for each child by federal and state governments. The formal schooling years, from kindergarten to year 12, are an important time for learning about things people may experience throughout their lives; this is the ideal time to teach life skills, as students are receptive, so knowledge can be given in a structured way. Formal education is about more than just academic achievement; students are also prepared for living in society, for leading healthy and safe lives, and for dealing with problems and issues they will face.

This is the purpose of subjects such as Personal Development, Health and Physical Education (PDHPE), which is a part of the NSW curriculum.

PDHPE aims to teach students how to be healthy and how to stay healthy throughout their lives.

The emphasis is on movement and exercise, but the subject also covers sexual health, mental health, personal safety, gender issues, drug education and other topics. Social justice and diversity are also discussed, with the aim of helping students prepare for their future lives by understanding the society they will be a part of, and how to use the resources that will be available to them.

In the Individual and Community Health component of PDHPE, high school students learn about how to prevent blood-borne viruses being spread through sexual activity and through drug use. When learning about first aid, they are also taught how to reduce the risk of contact with body fluids, and what to do if they are exposed to body fluids, to minimise the transmission of HIV and hepatitis B and C.

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Setting the curriculum and syllabus Curriculum refers to the outline for what needs to be taught to students during their school years; the syllabus is a more specific guide to what will be covered as part of a school subject.

Currently in Australia, the school curriculum is set by the education authority in each state and territory. In NSW, the curriculum and the syllabus are set by the Board of Studies NSW. The board supports both government and non-government schools with resources for teachers and manages the Higher School Certificate exams. It is also responsible for accreditation of non-government schools, certifying their standards and practices.

The NSW Department of Education and Communities, through the NSW Curriculum and Learning Innovation Centre, provides curriculum support for educators. This includes suggested activities for teachers to use in subject areas; for PDHPE, there are activities designed for education about sexually transmissible infections and blood-borne viruses. These are designed to promote class discussion, with emphasis on realistic scenarios and positive messages rather than dramatic outcomes and judgemental stances. For example, the activity about hep C involves group discussion of a case study about a student with hep C bleeding after a sports accident. The discussion is guided through the management of someone bleeding, the transmission of hep C, disclosure and the student’s right to privacy, and what they could do within their school to educate everyone about hep C. The Department of Education acknowledges that both students’ and teachers’ knowledge of hep C is low, and that the most common trigger for discussions is the discovery that a student, teacher or parent has hep C.

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Image / Geoffery Kehrig / Flickr

A new national curriculum In 2008, the Federal Government began to prepare a new high school curriculum that would be standardised across Australia. Each state and territory would then set its own syllabus. The guidelines for high school education would be set nationally, and the way this would be delivered to students would be set by each state or territory. It is the first time this has been done in Australia.

Several subjects have already been through the draft and consultation processes; PDHPE is now going through this. The task has been given to the Australian Curriculum, Assessment and Reporting Authority (ACARA), an independent authority

that is working with state and territory education departments, teachers, education associations and other interested stakeholders. PDHPE has been through the “Shaping” phase and is now in the “Writing” phase; part of this is consultation on the draft curriculum, which closed in April 2013.

ACARA says that the reason for the change in responsibility for the curriculum is to raise education standards across Australia; to take the best from states and territories so that all Australian students will benefit. A national curriculum would also allow better consistency in education across the country, and provide a single curriculum to be updated and improved in future years.

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feature Health and Physical Education

Changes to the Curriculum

The name for the new national curriculum is Health and Physical Education (HPE). The aim of the HPE curriculum is to give students the skills and knowledge they will need to have safe and healthy lives, now and in their future.

It is being designed to shift the focus from a negative approach to a positive approach: from risk factors, poor health and disease to enhancing health and wellbeing. This is based on the salutogenic model, developed in the 1970s by sociologist Aaron Antonovsky. Salutogenis concentrates on factors that are positive and supportive of health; using this model, the new curriculum would be aiming to equip students to cope with stress and stay well using resources that they have, and those that are available in wider society.

One concern of the health education field is the seeming stepping back from dealing with some issues, such as blood-borne viruses, in the HPE curriculum.

I could not obtain any sanctioned statements from ACARA about the omission of these topics, but informal discussion with a media representative suggested that there is room to cover specific areas such as STIs, BBVs and HIV/ AIDS within the subjects of Sexual Health, and Drugs and Alcohol. As states and territories will be setting a more detailed syllabus, each education authority would be able to decide what exactly should be taught within these subject areas.

However, with the new draft HPE curriculum, there is no specific provision for high school students to be educated about STIs, BBVs and HIV/AIDS as part of their health and physical education. Additionally, there are other aspects of blood-borne viruses outside of these categories, such as the risks from unsterile tattoos and piercings; these issues

Image / D.Boyarrin / Flickr

“We want the curriculum to take a strengthsbased approach,” says Professor Doune Macdonald, lead writer of the Shaping Paper for the Australian Curriculum, Health and Physical Education. “This involves changing the emphasis from ‘Why am I unhealthy?’ to become ‘Why am I healthy?”’

While in the existing NSW curriculum for years 7 to 10, as part of Sexual Health learning, students are taught to: “identify behaviours that assist in preventing sexually transmissible infections (STIs), blood-borne viruses (BBVs) and HIV/AIDS and explore the interrelationship with drug use”, the new draft national curriculum makes no references to STIs, BBVs or HIV/AIDS.

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feature are particularly relevant to young people.

Introduction of a national curriculum is a unique opportunity to formalise and improve education; this is especially important for providing information that young people may not get elsewhere. Educating young people about things which they may not realise can affect them is one of the most difficult, yet most important aspects of high school.

With input from other groups and individuals, including from Hepatitis NSW’s C me advocates, the new national curriculum could fulfil its potential to raise high school standards across Australia, and prepare young people for the society in which they will live. • Adrian Rigg is a freelance health writer who regularly contributes to Hep Review magazine: adrian.j.rigg@gmail.com

Consultation on the draft curriculum

Image / danisabella / Flickr

Hepatitis NSW, together with Hepatitis Australia, submited its views to ACARA, advocating for more specific references to education about blood-borne virus facts and transmission routes.

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feature

Justice reinvestment campaign for aboriginal young people In NSW, Aboriginal young people make up just 2.2% of the general population, but over half of the detention population.

Aboriginal young people are also 28 times more likely to be placed in juvenile detention than non-Indigenous young people.

The Justice Reinvestment for Aboriginal Young People campaign aims to help close these gaps.

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he Justice Reinvestment for Aboriginal Young People Campaign is committed to addressing the shameful overrepresentation of Aboriginal people in custody.

We aim to influence the NSW Government to shift spending that has been allocated for prisons towards community-based programs and services that address the factors that contribute to criminal behaviour in young people. This is because: • Aboriginal young people now make up 50% of the prison population in NSW, and are 28 times more likely to be placed in juvenile detention than non-Indigenous young people; • When young people offend, there are often other issues at play such as homelessness, child protection, disability, high-risk drug and alcohol use, normalisation of violence, poverty and a lack of appropriate services; and • The average daily cost of supervising and caring for juvenile offender in detention in 2011 was $652 per person per day, or $237,980 per person annually.

A justice reinvestment model provides communities with the power and resources to support Aboriginal young people, tackling challenging circumstances through long-term measures tailored to local needs. Our campaign seeks to create alternative pathways for Aboriginal young people who may otherwise be destined to life-long offending, drug and alcohol abuse and suicide.

The Campaign is calling on the NSW Government to implement a justice reinvestment policy and is seeking a commitment to establish a Justice Reinvestment Advisory Group. This Group would provide input into the development 32

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and implementation of justice reinvestment policies, monitor the proportion of funds redirected from corrections and detention over the next 5-10 years and monitor the levels of Aboriginal young people in detention.

Adding her support to the campaign, Her Excellency, Marie Bashir, Governor of NSW, said “Aboriginal young people surely need our help and our support to address the circumstances that lead to prison.

Communities need more help to support Aboriginal young people.”

“More programs indeed are required that can make a real difference and positively engage Aboriginal young people who may be at risk of offending. Incarceration is not the solution. More community cohesion, more hope and a better future for our valuable young people are required,” she said.

Mr Mick Gooda, Aboriginal and Torres Strait Islander Social Justice Commissioner, is one of hundreds of supporters.

“Putting Aboriginal and Torres Strait Islander people in detention centres and prisons should be the option of last resort. We’d do far better if we put our resources and political will into trying proven alternatives like justice reinvestment,” he said.

“If we are serious about closing the gap in life outcomes for Aboriginal and Torres Strait Islander people we have to get serious about tried and tested alternatives like justice reinvestment.”

Image / kirikiri / Flickr

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A justice reinvestment model provides communities with the power and resources to support Aboriginal young people, tackling challenging circumstances through long term measures tailored to local needs.

Actions you can take today to support the campaign Keep up to date by subscribing to the campaign e-newsletter.

Justice Reinvestment Campaign will email you occasionally with progress reports and additional actions you can take.

Email your friends, networks, membership base and colleagues. Justice Reinvestment Campaign has some sample emails you may like to use.

Like the campaign on FACEBOOK, subscribe to the YouTube channel and follow Justice Reinvestment Campaign on Twitter. • Your first step? Visit the campaign website: http://justicereinvestmentnow.net.au/

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Sites

www.hep.org.au

High-Risk Sites l

be lp l l i e w get he s r e th ke t to a a d h m t of un g, it o y So r n e a wron nto a n o i e re o t m a g c o e u s o gs o inj y n i n h if t ot t s whe n. n se ite ur ow n s e s e s o

The groin and the backs of the legs are high-risk.

No advice is given on how to inject into them because there isn't anything you can do to make them safer: they are described here to explain the risks.

l

These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs.

Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.

Safer Injecting Procedures

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y on

If you are injecting into your arms now, it would be well worth promising yourself that if you ever find yourself contemplating using any high-risk sites, you'll stop injecting.

*

If you d these s o use any of ites an around d you injecto are rs who tried in haven' jecting t yet sites, r into da emem ngerou b s er tha you do t seeing it may encou them to try. rage

The Hep Review harm reduction poster, July 2013 (#35). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne.

The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au

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my story

Shane’s story: Rockin’ On I

n my early 30s I had a major relationship breakdown and one day found myself standing on the street in my overalls with the door slammed shut and the locks changed. I kinda thought, “Right then, what shall I do now?” I had a good paying job and somewhere to stay so I started partying. For about four to five years I got heavily into drugs. I thought I was moving forward but really, I was just digging myself a big hole. I was working 10 hours a day at hard physical work and every cent I was getting, I was spending on a bunch of bad stuff. At one stage I was having a hit just to get up and go in the morning. I realised a few years ago that I probably had depression, and that was just the way I buried it.

By the end of that decade, I had come off the drugs and managed to dump the methadone. Not many people give up methadone. Heroin detox takes about four days, but for methadone you can just times that by 10. I went to a friend’s house and locked myself in his garage for two weeks.

He looked after me a bit, cooked meals and stuff.

Every now and then he would get me to come outside and mow the lawns or something like that. I knew that the withdrawal couldn’t kill me, so I just kept going. I wanted to be rid of it.

I was first diagnosed with hep C at a Melbourne hospital, back in 1996. The specialist discussed interferon monotherapy with me, but then said, “Don’t worry about it, there’ll be a cure in five years.” So I just carried on playing in bands, drinking, not taking anything too seriously. But six years later I started going downhill really fast.

I had encephalopathy. I was confused and didn’t know who or where I was at one point. Two close friends told my partner, Michele, that I was dying.

I remember talking to the specialist, then going outside into the hospital gardens with Michele, holding her as she went limp in my arms and saying over again, “Listen, I am not dying!”

I’d been sick with fevers and cramping in my face, my body, everywhere. During this time I had been discharged with “fever of an unknown origin” from two major hospitals before the doctors at another hospital realised that it was related to my liver and the hep C, that it wasn’t going to work just trying to manage it and that I was in big trouble. They said my only option was a liver transplant, “If they’ll have you.”

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The specialist knew another specialist at a hospital where there was a renowned transplant team, and he wrote an old-fashioned referral letter for me, and they accepted me for a transplant work-up. I think without him I wouldn’t have survived. By then I had given up smoking and drinking and was looking after myself. The work-up takes about three months. Before they decide you can have a transplant, they assess you carefully. I saw specialists in this, that and the other department. They did regular tummy taps, where they drained ten litres of fluid from my stomach; it’s when the whole liver has just shut down basically. I went into hospital at 135 kilos and when I left I weighed 84 with no muscle tone in my legs or arms and this great big face.

It wasn’t a good look. I spent so much time in hospital in those days I started to see it like a second home, a place to go where you get looked after.

Anyway, after all the assessments, you then have to wait for a suitable liver to come up. I think the waiting was tougher on my family than on me.

I had the feeling that things would take care of themselves. It was midnight when the specialist came into my room, tapped me on the head with his mobile phone, and said, “You’re going in, mate.”

I had the transplant on 31 July 2004. I was discharged home in 13 days. I had my birthday and wrote 30 songs. I wrote a song and a poem for the family of the donor. It was passed on to them. I do think about the donor from time to time. He was a young guy who died in a car accident. I don’t dwell on it though or have any guilt. I’m just lucky to get another chance. I’ve always been a happy-go-lucky type. Things are at their best when they’re at their worst. I try to keep people’s spirits up and not be too sombre.

With all these times in hospital, I’ve been placed in wards where people are dying, and I’ve always tried to have a smile and a laugh. There’s nothing anyone gains by being depressed. I’m not saying clinical depression isn’t a terrible thing or that people don’t suffer with it. I just try to keep myself up.

One day when I was at the liver clinic, I noticed this guy with black fingernails. I thought I recognised him. Then when they called his name out, he turned out to be Paul Stewart from the

my story

(Melbourne punk band) Painters and Dockers. He ended up writing an article about organ donation, and another muso, drummer Bob Carey read it and said it made his mind up about deciding on organ donation. The three of us got together with my sister who is a singer and a few other ring-ins, and formed an “on again off again” band, The Transplants. We played old Painters and Dockers numbers and some of mine at the World Hepatitis Day concert and at an event to raise awareness for organ donation. The whole idea is to use the music to raise awareness so that others might get the opportunity to live longer and healthier lives.

It gives me a feeling of giving back as I have been given so much.

When you have your liver transplant and then get discharged home, there’s a euphoria that happens. Mine hasn’t gone away yet. I still think its just amazing. There were some complications after I had a biopsy and I ended up in hospital again having chest surgery after they had accidentally clipped my diaphragm. But before the transplant, I’d thought I was gone, and I’ve had two plus years of good heath now. I have a great life. I’ve worked for community television for ten years, I write songs, perform, I’ve got into editing. I’ve started learning new things and doing things since I got my health back. It’s been a long road but I got there in the end.

Since the transplant in 2004, the virus has attacked the new liver, which is now partly cirrhotic.

I know a lot of people who have hep C are scared of treatment. I’d say don’t be. Treatment is much better now than it was when I was looking into it.

I wouldn’t hesitate to try it if I could. From what I know a small number of people do get horrible side-effects, and a small number don’t get any. I never get any side-effects of drugs. I’ve been on immunosuppressant drugs that aren’t even on the PBS (Pharmaceutical Benefits Scheme) and all I’ve had is a bit of dry skin.

I’d say that the majority of people that do treatment for hep C just muddle through. If I had the knowledge I have now, back then when I was diagnosed, I’d have done treatment, for sure.

• Abridged from Treatment, Life, Hep C & Me. Hepatitis Australia 2009.

Shane Laffy, 54, is a veteran of the music industry, performing with bands such as 20 Flight Rock, Man Friday, and most recently with The Transplants: http://tinyurl.com/ cqbbm7e See next page for Shane’s update.

Image / Elian Chrebor / Flickr

I haven’t really felt the stigma of having hep C. Most of my friends are artists or musicians and a lot of that crowd have hep C. I know lots of people who have died from liver failure or liver cancer and usually it’s a result of hep C. Outside that community of course, there’s a lot of stigma about drug use and hepatitis. I’m not shy about talking about it, and I’m not shy about showing my scars.

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my story

shane’s story: a follow up

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ight years and six months after my transplant and I’m still here enjoying life. Being close to death way back then, it’s amazing for me.

I’m back on the scene; rock & roll writing and performing, meeting new friends and generally having a very nice time of it.

It’s fine to say that I am having a wonderful time, but the truth is, it’s the people I have around me that makes it so special. I’m about to celebrate my 12th anniversary with my partner. If I didn’t have that strong relationship with her, I may well be gone by now.

My “Liver Brother” Paulie Stewart is now into his fifth year post-transplant. You couldn’t work with a better person. Always up and at ‘em, eccentric to the 9s and just an amazing artist. The best PR guy you could want.

Last year we put on a show for Donate Life Week at the Caravan Club in Oakleigh. We had some refugee boys from Africa, “The Flybyz” hip hoppin’ their way through the afternoon. Paulie works with these guys through The Brosnan Centre Brunswick, and they are just fantastic people.

Paulie got the “Human Headline”, Derryn Hinch to give a talk and he also did his Joe Cocker impersonation, “You are so beautiful” (apparently it’s one of his old party tricks). He then did a Painters and Dockers song with us “Your going

home in the back of a divi van.” It was hilarious.

I interviewed Derryn for ASYLUM TV about his transplant and his presence got all the free-to-air channels to show up. It gave us national coverage on the news that evening and we had over 400 attend the show; it is still a record for the venue.

Thank you Paulie, you’re a legend, mate.

We lost our little mate Shaun Miller just after the show. He was 17 and had two heart transplants.

His book has been published and it looks like a movie is in the wind. Shaun was to give a talk on the day for Heart Kids, but was unable to attend.

We miss you mate.

“The Transplants” again performed for Donate Life Week this year at Argyle Square in Lygon St Carlton on 3 March.

We have a couple of new members who performed with us last year, Jo’ Fraser on vocals and Steve Dagg on sax. They are both double liver transplant patients and are just great performers. We had John Grant (keyboards), Bob Cary (drums), Colin and Michael Badger (guitar and bass). Also Judith Durham (The Seekers) read some poetry that she has written about organ donation. It was a great day.

So, post-liver transplant, it’s fine to be alive but without all these wonderful people around me, it would be very lonely. I’m a very, very lucky boy in more ways than one. My message to others with liver disease is don’t give up on hope.

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Image provided by Shane

• Shane Laffy More on Shaun: http://tinyurl.com/bdtgcnv More on The Transplants: http://tinyurl.com/ atsmcv3

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AN UPDATE ON OUR ADVOCACY WORK

Follows from page 6.

Hepatitis NSW also supported a four year clinical trial of medical cannabis, which was originally recommended by the 1999 NSW Drug Summit.

The second was to the Legislative Council Inquiry into drug and alcohol treatment. In our submission, we argued against the further expansion in the use of naltrexone implants, and in favour of the ‘decriminalised’ approach to drug laws adopted by Portugal, as opposed to the more strict approach adopted by Sweden.

We also opposed the further rollout of compulsory treatment of people with dependence on alcohol or other drugs, and strongly argued against the passage of Mr Fred Nile’s proposed Drug and Alcohol Treatment Amendment Bill 2012. We will let you know the outcomes of both inquiries in future editions.

Close the Gap day @ hepatitis nsw

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n 22 March Hepatitis NSW co-hosted a Close the Gap event which drew close to one hundred workers together to hear about Close the Gap challenges and campaigning.

Aboriginal and Torres Strait Islander people can expect to live substantially shorter lives than other Australians – up to 20 years less in some cases.

Babies born to Aboriginal mothers die at more than twice the rate of other Australian babies, and Aboriginal and Torres Strait Islander people experience higher rates of preventable illness such as heart disease, kidney disease and diabetes.

Finally, we will make sure to provide an update on our campaigns on the draft national Health & Physical Education curriculum, and our prisons campaign, in the next Hep Review.

• Alastair Lawrie, Hepatitis NSW

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

Image / jasonmalouin.com

It’s a health crisis you’d associate with an impoverished nation, but it’s happening right here in our own backyard. Together we are changing this picture.

The Close the Gap coalition is calling on governments to take action to achieve Indigenous health equality within 25 years.

The study is open to people preparing for hep C treatment and participants are being sought from within Australia or from other countries.

Information provided is completely confidential and you have the right to withdraw from the study at any time.

For more information and if you have any questions regarding this research please contact Mr Simon Langston at slangsto@bond.edu.au

Please take the Close the Gap pledge. It doesn’t cost you anything; just a few minutes of your time, but will help keep up the pressure for change: http://tinyurl.com/d4fjrn2 • Abridged from the Oxfam Close the Gap website: http://tinyurl.com/6t8v73q

The Hepatitis C Treatment Outcome Study – Bond University http://hepcstudy.hsstechnology.bond.edu.au

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feature

in the FIeld: A New Hep B Vaccination Outreach Clinic This year saw the start of a pilot project that offers hepatitis B vaccination to clients of Health ConneXions, the Primary Needle Syringe Program (NSP) in Liverpool.

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ealth ConneXions is located within South Western Sydney Local Health District at Liverpool Hospital. It is part of a partnership formed between the Local Health District’s Drug Health Harm Reduction Program and Community Health Sexual Health Service aiming to increase the level of hep B vaccination among clients.

Reflecting the previously mentioned surveys, current literature suggests there are low levels of vaccination coverage among people who inject drugs. Despite universal infant vaccination (since 2000) and adolescent catch-up programs, not all people who inject drugs will be protected by these programs for some time.

Survey results in 2011 indicated that 41% of Health ConneXions clients were either unvaccinated or did not know their hepatitis B immune status. A previous client survey in 2006 indicated strong interest in hepatitis B vaccination if offered at the NSP.

Hepatitis B vaccination uptake is greatest when offered on-site. People who inject have ongoing issues around access to health services especially around trust, due to stigma and discrimination.

This is the first time a clinical outreach service has been provided at ConneXions. An advisory committee was established to oversee the pilot project with one staff member from each service together with a peer representative. The committee worked together to ensure the clinic is friendly and supportive of the clients’ needs whilst maintaining privacy and confidentiality.

There is a vaccination nurse from the Sexual Health Clinic present on-site for two hours every Friday. The clinic has been promoted to clients with posters, stickers on fit packs and the use of messages utilising the health promotion mannequin at Health ConneXions. Clients are offered refreshments and the nurse is happy to answer questions and offer referrals if necessary as well as explaining the importance of being vaccinated for hepatitis B. The pilot will run until the end of June when the project will be evaluated. It is hoped that the clinic can continue to be offered as an outreach service by the Sexual Health Clinic.

Hepatitis B (HBV) is both a blood-borne and sexually transmitted infection. The major issues in Australia are the need to prevent new infections and managing chronic infections.

New infections can be prevented by hepatitis B vaccination, which is especially recommended for people who inject drugs.

40

www.hep.org.au

It is proposed that by offering hepatitis B vaccination on-site for people accessing Health ConneXions, it will help build a supportive environment, increase trust and improve access to health services, in particular the Sexual Health Clinic for this community.

We hope to report back following our project evaluation later this year.

• By Christine Maidment, Health Promotion Officer, Sexual Health Service SWSLHD

Factsheets on Hepatitis B now available in 13 languag es The HepB

Help is a g reat websit lots of info e that offe rmation on rs hepatitis B factsheet in , including the top 13 a languages to hepatiti s B prevale according nce for people who are ne . The factsheets are wly diagno give a bas sed and th ic overview ey and inform disclosure ation abou , managem t e n spread of t and prev infection. enting the • To dow nload the factsheets website: w , just visit ww.hepbh the elp.org.au /

Is family and peer naloxone distribution gaining momentum?

feature

It is very concerning that fatal overdoses associated with heroin and other opioids such as oxycodone and morphine continue to rise. An NDARC study reported that 500 people accidentally overdosed and died in 20081 – Trevor King from CREIDU reports on this worrying issue.

I

The ACT led the way in 2011 in Australia by launching Expanding Naloxone Availability in the ACT (ENAACT), a program designed to provide comprehensive overdose management training and prescribe supplies of naloxone for use by a trained peer (friend or family member) in the event of an opioid overdose.

In NSW, the Overdose Prevention Education & Naloxone (OPEN) project at Sydney’s Kirketon Road Centre and Langton Centre remains the only project of this nature in NSW. It involves training people who inject opioids and their carers in opioid overdose prevention and management, including the medical prescription and dispensing of naloxone. The acceptability and feasibility of this approach is being formally evaluated. It is hoped that this will lead to its wider implementation, to complement other efforts to reduce overdoserelated morbidity and mortality among people who inject drugs.

The Victorian Government intends to “assess and implement targeted interventions to widen the use and availability of naloxone...and take steps to encourage prescribing for use by family members, carers or nominated peers...” This is outlined in Reducing the Alcohol and Drug Toll: Victoria’s Plan 2013-2017 (p38).

The Centre for Research Excellence into Injecting Drug Use (CREIDU) developed a naloxone distribution policy brief last year: Improving responses to opioid overdose through naloxone.

The authors, Prof Paul Dietze (Burnet Institute) and Prof Simon Lenton (National Drug Research Institute) have both provided national leadership on this important policy issue. The brief outlines research evidence and the implications for policy and practice.

Image / Google Images

mproved access to treatment services, such as methadone and buprenorphine maintenance, and provision of safer places to inject are responses that are known to be effective strategies in reducing fatal overdose. Another is the provision of naloxone as part of an overdose management strategy for potential witnesses.

The ANCD has also been a strong advocate for freeing up the availability of naloxone to potential overdose witnesses (including frontline workers, families and peers). They have a Position Statement: Expanding Naloxone Availability.

Hopefully there is a realisation across jurisdictions that the research is in and it is now time for policy action and further evaluation of this safe and costeffective way to reduce opioid overdose.

• Trevor King, Centre for Research Excellence into Injecting Drug Use, Burnet Institute, Melb.

CREIDU is funded by the National Health and Medical Research Council (NHMRC). Grant Number 1001144. The contents of this document are the sole responsibility of the author and do not reflect the views of NHMRC.

Links Expanding Naloxone Availability in the ACT: http://tinyurl.com/bdvflqz Overdose Prevention Education & Naloxone: http://tinyurl.com/ac56frs Victoria’s Reducing the alcohol and drug toll plan: http://tinyurl.com/aoycm9p Improving responses to opioid overdose through naloxone: http://tinyurl.com/b9n2nzh ANCD Expanding Naloxone Availability Position statement: http://tinyurl.com/ay7j6gc 1

http://tinyurl.com/8f29dh5

Hep Review magazine

Edition 80

June 2013

41

promotions

Live Well recruiting

Book early for your place in the next Central Coast...

Hep C: Take Control Program Want to meet other people with hep C? Want to learn what you can do to stay healthy and get more out of life?

Our Live Well program goal is to help people achieve better health outcomes through sharing information on diet, exercise, alcohol and other drugs, mental health, treatment and navigating the health care system.

We welcome anyone who is living with hep C and is looking for ways to improve their health and well-being. Our group workshops are free, confidential and suitable for everyone’s needs.

We have also invited a number of experts in diet, exercise, alcohol and other drugs, mental health and treatment to be guest speakers.

• Duration: One weeknight each week for six weeks.

In a supportive environment, participants will work together over four weeks to share and develop skills to better manage their hep C and improve their symptoms.

Some topics to be covered are: • Dealing with stigma and discrimination • Better management of hep C and its effects on your life • Treatment and dealing with side-effects • Making healthy lifestyle changes

• Who: You and other people with hep C • Where: Surry Hills (near Central Station)

live well

The course will be facilitated by Jennie Hales and Amanda Burfitt, from the Central Coast Local Health District.

There will be an emphasis on respecting the privacy and confidentiality of all participants.

For more info about Take Control, please phone Jennie on 4320 2390 or email: jhales@nsccahs.health.nsw.gov.au

Are you living with hep C and looking for ways to maximise your health? live well can help Come join our group, meet others who have hep C and get information that can help you improve your health and wellbeing.

These courses are held at Wyong Central 38A Pacific Hwy, Wyong 42

www.hep.org.au

Image / Leonard John Matthews / flickr

Interested?

Contact Fungi on P: 9332 1853 or E: ffoto@hep.org.au ALL GROUPS ARE CONFIDENTIAL AND FREE

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hep review magazine photo call A picture tells a thousand words, the old saying goes, and we really want your pictures in Hep Review magazine.

We want our “voices” to ring loud in Hep Review and for many years we’ve recruited people’s personal stories. We want to go further, though.

It makes sense to get pictures of us and our health workers and our clinics into our magazine. Who wants to see images found on the internet which could be from anybody, anywhere (often overseas)?

If you like taking photos and have a decent camera, why not become a roving hep C photographer?

We’ll pay $50 for each image that we publish in Hep Review and $100 for Hep Review cover shots.

Image / Pa

ul Harvey

Does it sound too easy? Well, there is a bit of work involved. We want pictures of people and this means we need permission signoffs from the people in the photos. We also need high-definition images; pictures that are between 2 to 5MB and even bigger for covershots.

• Further conditions apply. If you’re interested, please contact Paul Harvey on 02 9332 1853 or pharvey@hep.org.au Also see our call for personal stories, page 6.

Would you like to help with hepatitis C research?

You can if you have recently contracted hep C Research Study Treatment of recently acquired hepatitis C virus infection (ATAHC II) The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) is running a hepatitis C study for patients who have acquired hepatitis C recently (in the last two years). ATACH II aims to explore the best treatment strategy for patients with recently acquired hepatitis C infection. You can choose to receive treatment or not if you decide to help.

There are clinics participating in the study in Sydney, Melbourne, Brisbane and Adelaide. Contact Barbara Yeung at the Kirby Institute on 02 9385 0879 or byeung@kirby.unsw.edu.au to find out about the study or to find your nearest site.

The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee

Hep Review magazine

Edition 80

June 2013

43

promotions

C-network The C-network is an “announcement-only” email news service with almost 900 subscribers. Posts are made by Hepatitis Queensland about once every three weeks. Membership is anonymous and confidential and not visible to other C-network members.

Topics on the C-network include viral hepatitis treatment studies and trials, research, information on testing, transmission, prevention, harmminimisation, complementary therapies, coinfection, chronic-disease self-management, personal stories and the latest events and resources.

A subscriber survey in 2008 found that 96% of respondents rated the C-network either “Good” or “Excellent” overall.

• Want to keep up-to-date on viral hepatitis?

Subscribe to C-Network today: just send an email to hco@hepqld.asn.au

Hepatitis and FOOD FoodSURVEY survey HEPATITIS C C AND The Hepatitis C and Food survey has been designed to gain a better understanding of what you think about nutrition and the current Hepatitis C and Food brochure.

This is an anonymous survey and your answers will help improve the current brochure and potentially inform other nutrition promotion programs for people with hepatitis C in NSW. All participants can choose to go in the draw for a $50 Coles Gift Card.

Please go to the following links to complete the survey. If you have further enquires please contact Louise Houtzager at The Albion Centre, phone 9332 9611. The survey will be available until late August, 2013.

•

Hepatitis C and Food brochure: http://www.hep.org.au/documents/HepC-Food-980KB.pdf

•

If you are living with hepatitis C and live in NSW, please complete the survey at: https://www.surveymonkey.com/s/CCRRL8V

•

If you are a health care provider working with people living with hepatitis C in NSW, please complete the survey at: https://www.surveymonkey.com/s/CCNCQRT

The study is a collaborative project between The Albion Centre, Royal Prince Alfred Hospital and Hepatitis NSW. This study has been approved by the South Eastern Sydney Local Health District – Northern Sector Human Research Ethics Committee. Any person with concerns or complaints about the conduct of this study should contact the which is nominated to receive complaints from research participants. You should contact them Research Support on 02 9382 3587, or email ethicsnhn@sesiahs.health.nsw.gov.au and quote HREC ref no 12/275.

2012 AlbionCentreHepCandFood Surveyadvert pdf Version 2: 10/12/2012

44

www.hep.org.au

avoid alcohol to st e b ’s it , C p e h e v if you ha as much as possible

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Want to alternate your alcoholic drinks with something soft but still with a bit of bite?

Image via realfoods.co.uk

• Tonic water with a squeeze of lemon • Soda water with a squeeze of lemon • Tonic or soda water diluted with fruit juice and bitters.

Hep Review magazine

Edition 80

June 2013

45

hep chef

Lamb and barley soup S

oups are easy winter warmers which can be healthy alternatives to other unhealthy comfort foods. Avoid the extra sodium found in canned and packet soups, and try your hand at whipping up your own. It’s not as hard as you think and you’ll also fill your house with warmth and delicious aromas! Packed full of nourishing veggies and lean meat or legumes for protein, you can turn them into a complete meal with a grainy bread roll, or some pasta, couscous or barley cooked through.

Try making a double batch and freezing the left-overs in portions to simply reheat for the inevitable night when you can’t be bothered to cook.

This recipe for lamb and barley soup serves four.

Ingredients 1/3 cup (75g) pearl barley 2 teaspoons olive oil 1 large onion, finely diced 2 sticks celery, diced 600g lean lamb leg, trimmed, cut in 2cm cubes 2 cloves garlic, crushed 2 large tomatoes, diced 2 springs fresh rosemary, chopped or 1 teaspoon dried rosemary 2 cups (500ml) salt-reduced chicken stock or water 3 cups (750ml) water Handful of kale or spinach leaf (optional) Method Pick through barley and remove any sticks or stones. Rinse in cold water and drain.

Heat oil in a large saucepan over medium heat. Add onion and celery and cook, stirring occasionally, for five minutes. Turn heat to high, add lamb and garlic. Cook, stirring occasionally, for five minutes or until lamb is browned.

Add barley, tomatoes, rosemary, stock and water to pan. Bring to the boil. Reduce heat to low and simmer, partially covered, for one hour or until the lamb and barley is tender. Add extra water during cooking if soup gets too thick.

• This recipe was provided by Miriam Chin, Dietitian at the Albion Centre, Surry Hills.

Image / Paul Harvey & Michelle De Mari

Adapted from www.healthyfoodguide.com.au

46

www.hep.org.au

Do you want to see your recipe here?

Simply send it in to us – see address on page 67.

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“I get the opportunity to communicate with people from all walks of life...and to do something productive with my time.”

“I got hepc after having multiple blood transfusions. I was unable to talk about it until I joined the mailout team. At last I was able to speak freely with other people who also had the condition.”

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“I was successfully treated but am continuing to be part of the team.”

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Image / Jason Pier in DC / Flickr

Image / Parker Knight / Flickr

Volunteering at our hep review mailouts

If you’re interested in finding out more about volunteering for our mailouts, just contact Paul Harvey on 9332 1853 or pharvey@hep.org.au Hep Review magazine

Edition 80

June 2013

47

feature

HELLO HEPATITIS HELPLINE I’m calling from prison and I just found out I have hep C. One of my mates told me I can get treatment while I’m here as long as I’ve got enough time left on my sentence – is that right? How long will the whole process take?

What you’ve heard from your mate is mostly right.

You can access hep C treatment in any prison in NSW and, while it’s unlikely that you’ll be started on treatment if you’ve got less than a six month sentence – especially if you have genotype 1 – you can still be released while on treatment. If you are it’s really important that you keep up your treatment on the outside to give you the best possible chance of clearing the virus.

With the recent approval of the new treatment drugs boceprivir and telaprevir it’s most likely that you’ll be looking at around six months of treatment, regardless of your genotype. However, if you are genotype 1 and have had treatment before or have cirrhosis you might be looking at a slightly longer duration.

This is the short answer to your question but there are a couple of other things which might be helpful for you to know.

First of all there is usually a waiting time to see a nurse. How long you will have to wait depends on which prison you’re in (a smaller prison usually means a shorter waiting time) and what health concerns other prisoners may have as some are deemed more urgent than hep C. As a general guideline, it can be a couple of months before you see a nurse so it’s a good idea to be as honest as you can with the request as the more information the nurse has about your situation and risks, the more likely you are to see someone in a timely manner.

“Hello Hepatitis Helpline” is brought to you by the Hepatitis Helpline team.

The questions are based on genuine calls but some details may have been changed to ensure caller anonymity.

48

www.hep.org.au

If you’re nervous about being completely honest (for example if you’re injecting drugs and are worried you might pass the virus on) remember that anything you tell the nurse is confidential.

Secondly, there is an assessment process that needs to take place before you can start treatment. This happens on the outside too – as you may have heard, hep C treatment can be a bit rough so it’s important that your needs and any other health issues are investigated and assessed before you start. This process can take up to six months but does vary from person to person.

Once this is complete and you have the green light to start, it will usually be about one month before you actually start treatment.

So as you can see it can be a bit of a process!

While the duration of the treatment itself is reliable, remember that the waiting periods given here are just guidelines and things may move more quickly depending on where you are and what support is available.

If you’d like more information you can call the Prisons Hepatitis Helpline. We’re number “3” on the common calls list. As well as answering general questions about hep C and treatment, we can assist with individual enquiries about your testing or treatment process. If things are taking a lot longer than what has been outlined here we can get in touch with Justice Health on your behalf and get an update on where things are.

• Kirsty Fanton, Hepatitis NSW.

FERRAL. INFO. SUPPORT. RE CONFIDENTIAL

hepatitnise helpli

Please tell us what you think about Hep Review magazine below or go to http:// www.surveymonkey.com/s/KDJLGPY You’ll go in a draw to win a $50 gift card of your choice (see conditions below*) After reading this edition, I feel I know more about hep C.

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For people who are affected by viral hepatitis

After reading this edition, I feel more connected to my doctor and nurses, etc.

For healthcare workers

Is there anything you’d like to comment on – good or poor?

* Your feedback will help us develop a better magazine. For each edition we will draw one winner from all entries received who have provided a name and contact number. This offer is for NSW residents only. One entry per person.

Hep Review magazine

Edition 80

June 2013

49

To send:

• Carefully rip or cut out this page

• Fold the top part of the page back along the top dotted line

• Then fold this bottom part back along the bottom dotted line

• No one will be able to see what you’ve written

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

• Post the form in your nearest mailbox

• Or fax back both sides of this form to 9332 1730.

One $50 prize winner will be drawn for each edition.

Your feedback will help us continue to develop a better magazine – for you!

50 www.hep.org.au

male

transgender

60+

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

m. Other (please describe)

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 health care worker

f. Ex-prisoner

e. Current prisoner

d. Person with hep B

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

b. Person who has been cured of hep C

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 45)

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

2. What is your gender? female

1. What is your age? (Please circle one) -20 20-29 30-39 40-49 50-59

www.mhahs.org.au

Hep Review magazine

Edition 80

June 2013

51

www.mhahs.org.au

52

www.hep.org.au

Are you affected by hepatitis and looking for support? Then Let’s Talk.

promotions

Hepatitis NSW has a free counselling service offering face to face, telephone and online sessions. We have a team of qualified counsellors and a psychologist, all with specialised knowledge in hep C. If you want to talk we have someone who will listen and work with you to start creating a better way of living.

For more information call the Hepatitis Helpline on 1800 803 990 or email kfanton@hep.org.au

Let’s Talk

Hepatitis NSW Counselling Service

Hepatit is Treatm C factsheets ent ove rview Standa rd treatme combination nt Triple c ombina Triple c tion tre ombina Triple co atments m b tion tre ination co tr m ea bination atments What a treatme tment is the sta a d d n e n t with a re the c d. Th third “ne dard ure rate name V e third drug is w” drug e ictrelis) s? or telap ither boceprevi Predicto re r (brand vir (bran The two rs of cu d name tr re Incivo). “bocepre iple combinatio n treatm vir com What’s b e combin involve ation tre ination treatme nts are called n a t” tm d in sta and “tela ent”. combin Triple co previr nd ation tr m eatmen ard in Austra bination treatm e lia n ts have t? via Med What’s be icare sin in ce April en available 2013. combin volved in triple ation tr What a eatmen re the c ts?

Side eff ure rate Triple c ects sp s? o mbinati ecial w on trea a r tments n People ings Medica (w re subs chance ith genotype 1) idised tr of cure. have an average eatmen Liver b 70-80% S tandard t iopsy n combin a tion tre o longe require P a e tm ople (w ent ra ment fo average ith genotypes o r treatm th 70-80% ent chance er than 1) have NSW tr of cure. an eatmen t centre s Further Predicto informa rs of cu tion re The tim Standa

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Hep Review magazine

Hepatitis NSW’s range of factsheets Following the Medicare listing of boceprevir and telaprevir on 1 April, we’ve recently updated our Treatment overview factsheet.

To view the complete four page factsheet and our range of 40 other factsheets please go to http://tinyurl.com/3f2gx2p

Edition 80

June 2013

53

promotions

hep C okmarks bo

O

ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

www.hep.o rg .a u –

Can you help raise awareness by distributing the bookmarks?

Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets.

We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990).

• Hepatitis NSW

join us

sms

0404 440 103

email

TRANSMISSION@

Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)

Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques.

To find out about safer tattooing and piercing, visit

www.hepatitisc.or

g.au

or call the

Hep C Helpline (see over)

54

www.hep.org.au

Don’t discr

iminate

Hepatitis C is hard to catch.

Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds.

People with hep C come from all backgroun ds. accurately ass You can’t ume anythin about them. g

It is not transmitted by Hep C is ver touching someone who y difficult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid forks. and bloodknives tosame blood contac t wit h other people, you are not at risk .

It is transmitted when So if infected blood from one hep you find out someone C, sup the port them and has person gets into don dis ’t crim inate agains bloodstream of someone t them. else.

For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)

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feature

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Do you want to get healthy?

A new Hepatitis Queensland film launched recently confronts hepatitis and HIV discrimination in healthcare using personal stories and interviews with healthcare professionals.

“Infectious Personalities” explores the emotional and physical impacts of stigma experienced by four Queenslanders and the barriers this can create to accessing healthcare. The film shows the human face of stigma, using personal stories from real people with powerful messages.

Image / Google Images

See inside to find out how.

Infectious Personalities: A new FIlm about stigma

www.gethealthynsw.com.au

Hep C treatment is more effective if you’re in better shape: not carrying too much extra weight, and not tending towards type-2 diabetes.

With better treatment options on the horizon, perhaps now is a good time to ask yourself, Do I want to get healthy?

If the answer is yes, give the gethealthy campaign a call.

56

www.hep.org.au

It also describes practical ways that healthcare workers can engage with patients and the standard precautions that should be observed with all patients regardless of hepatitis status.

The film is available online: http://tinyurl.com/atpae69 • Hepatitis Queensland

An invitation to join or rejoin Hepatitis NSW

working towards a world free of viral hepatitis

You can join or rejoin Hepatitis NSW online at www.hep.org.au OR by filling out the membership form below.

Please complete the appropriate section (A or B or C) See the table at the bottom for membership types.

Are you a new or an existing member? (please tick one) I want to join for the first time I am renewing my membership I currently receive Hep Review but want to become a member

PAYMENT SECTION Hepatitis NSW membership ABN 96 964 460 285 All Hepatitis NSW membership fees are GST exempt.

Membership fees may be tax deductible for health professionals.

PAYMENT BY CHEQUE OR MONEY ORDER:

Please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form in the reply-paid envelope supplied.

I’m not sure - please check your database

PAYMENT BY CREDIT CARD:

A. People affected by hepatitis or other interested people

Please complete card details below and include day time phone contact.

Name

Mastercard

Postal address

Visa

Expiry:___ / ___

Name on credit card

Suburb/town State

Cardholders signature

Postcode

Phone

Card Number

Email B. Individual healthcare or related professionals $40 Name

Please quote name or invoice number in transaction description and post this completed form to our postal address, below.

Occupation Postal Address

Account Name: Hepatitis NSW Inc Membership BSB: 012 140 Account No: 3487 90744

Suburb/town State

Postcode

Phone Email C. Agencies, organisations and companies $50 or $70 Agency name

Your donation is also warmly welcomed.

Donations over $2 are tax deductable.

Please record the amount here.

$................

Declaration – I accept the objects and rules of Hepatitis NSW and apply for association membership / renewal. I agree to my personal contact details being held by Hepatitis NSW and used in accordance with the association’s privacy policy.

Contact name Position Postal Address

Signed:

Suburb/town Phone Email 1 2

5

10

20

50

Dated:

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Membership fee $25 $10 $0 (NSW residents only) $40 $50 $70

Hepatitis NSW Hepatitis Helpline 1800 803 990 www.hep.org.au

P: 02 9332 1853 | F: 02 9332 1730 | E: hnsw@hep.org.au PO Box 432 Darlinghurst NSW 1300 | Level 4, 414 Elizabeth St, Surry Hills NSW 2010

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research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need.

Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate.

This helps develop consensus opinion on particular research topics and broadens our overall knowledge.

The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.

Our online version of Hep Review is at www.hep.org.au and contains live links to the various sources shown in blue text. Another great reason to go online for your Hep Review magazine.

Research quick links Integrating treatment: Key findings from a qualitative evaluation of the Enhancing Treatment of Hepatitis C in Opiate Substitution Settings (ETHOS) study. http://nchsr.arts.unsw.edu.au/ media/File/Integrating_treatment.pdf Injecting drug use among Aboriginal people in New South Wales. http://nchsr.arts.unsw. edu.au/media/File/Injecting_drug_use_among_ Aboriginal_people_in_New_South_Wales.pdf Technical review of hepatitis C health promotion resources. http://nchsr.arts.unsw.edu.au/media/ File/1_Technical_review_of_hepatitis_C_health_ promotion_resources_report.pdf ‘Makes you wanna do treatment’: Benefits of a hepatitis C specialist clinic to clients in Christchurch, New Zealand. http://tinyurl.com/ a63ob6b Exploring the relationship between implicit selfrepresentation and drug use. http://tinyurl.com/ a26eyy5 Challenging stereotypes and changing attitudes: Improving quality of care for people with hepatitis

C through Positive Speakers programs. http:// tinyurl.com/b7mzfo6 Harm reduction knowledge and information exchange among secondary distributors in Sydney, Australia. http://tinyurl.com/ap5v8f9 Perspectives of a self-selected sample of former patients on the long-term health outcomes of interferon-based hepatitis C treatments: an exploratory study. http://tinyurl.com/alfyg62 Evaluation of an integrated care service facility for people living with hepatitis C in New Zealand. http://tinyurl.com/a7d28yu Risk Practices Among Aboriginal People Who Inject Drugs in New South Wales, Australia. http:// tinyurl.com/azma8dm Health worker attitudes toward peer workers in hepatitis C prevention. http://tinyurl.com/bklkbso Use of health services for sexually transmitted and blood-borne viral infections by young Aboriginal people in New South Wales. http:// tinyurl.com/aoq2bhd • If you have no access to the internet, please phone the Hepatitis Helpline for more information on the above studies.

Virology update Exciting results are reported from a study in which patients with chronic hep B were treated for at least five years with tenofovir disoproxil fumarate.

Post-treatment biopsies revealed histological improvement in the vast majority of patients, fibrosis regression and, among biopsied patients with cirrhosis at baseline, 74% were no longer cirrhotic at five years.

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Tenofovir DF was also shown to be safe and well tolerated, with no recorded cases of virological breakthrough related to tenofovir DF resistance.

• To keep up to date on hepatitis virology research, subscribe to Research Review, edited by Professor Stephen Riordan.

Healthcare workers can subscribe at http:// www.researchreview.com.au/

research updates Exposure to injecting and hep C among young people at risk

Impact of hepatitis and alcohol on liver-related deaths among people who inject

Australia – The study points to several ways in which the harms associated with hepatitis C might be reduced for socially vulnerable young people.

Contexts of injecting and exposure to injecting The extent to which participants were exposed to injecting was related to a variety of factors such as homelessness and/or volatile family histories, and to the kind of drug they used, in particular methamphetamine. Here, gaining better understanding about why methamphetamine use is common among vulnerable young people, and what meanings they attach to it, may allow the development of health promotion initiatives with messages about methamphetamine injecting that are specifically relevant to young people.

Making hepatitis C matter The silence around hepatitis C among study participants suggests the need to not only improve their knowledge about what it is and how it affects the body, but also to find ways to make it relevant to them. This could be done by connecting hepatitis C to issues that matter for them in their current circumstances, such as desires to be good parents, to have a life that is free from homelessness and violence; in short to have what some interview participants called ‘a normal life’.

Improving linkage between services Participants’ dependence on youth services and their lack of knowledge about harm reduction services suggests the need for better linkage between youth and harm reduction services. This could take the form of outreach work conducted by the harm reduction sector, where staff who have expertise about harm reduction go to the places where young people are. This could have an added benefit of upskilling the youth service workforce, who may have little understanding of what harm reduction is, and where to refer their clients.

Bryant, J., et al. The exposure and transition study: exposure to injecting and hepatitis C among young people at risk. National Centre in HIV Social Research, UNSW.

Australia – Mortality rates are elevated among heroin-dependent populations compared to the general population. Liver disease is emerging as an important contributor to mortality as the heroin-dependent population ages. Two major risk factors for liver disease are hepatitis C virus infection and chronic heavy alcohol use. Both of these are highly prevalent among heroin dependent people, but their relative contribution to liver-related mortality is poorly understood.

Data recording all prescriptions of opioid substitution treatment in NSW 1997-2005, were linked to the National Death Index. Crude and standardised mortality rates and standardised mortality ratios were calculated for liver-related and other major causes of death. Frequency counts were obtained for viral hepatitis and alcohol mentions in underlying liver deaths.

There were 208 underlying liver deaths for a CMR of 72.4 per 100,000py and liver deaths occurred at 9.8 times the general population rate. There were increases in liver-related mortality over time.

Viral hepatitis was mentioned in three-quarters (n=156, 76%), and alcohol in 43% (n=90) of underlying liver deaths.

Liver-related deaths were shown to be increasing in this heroin-dependent population, and the majority of these deaths involved chronic viral hepatitis infection. Increased uptake of treatment for hepatitis C virus infection is crucial to reducing the burden of liver-related mortality in this population. Hepatitis B vaccination, and screening of OST patients for alcohol use disorders and delivery of brief interventions as clinically indicated may also be of benefit.

The contributions of viral hepatitis and alcohol to liver-related deaths in opioid-dependent people. Larney S, et al. Drug Alcohol Depend.

2012 Dec 10.

• Abridged from http://tinyurl.com/b9zutt9

• Abridged from http://tinyurl.com/afv935u

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research updates Liver cancer survival time tripled by modiFIED SMALLPOX virus

people with hep b died most often of hep B issues

UK – The virus used in the vaccine that helped eradicate smallpox is now working its magic on liver cancer. A genetically engineered version of the vaccinia virus has trebled the average survival time of people with a severe form of liver cancer, with only mild, flu-like side effects.

United States – Researchers evaluated data from 6,689 patients (3,445 males and 3,244 females) with hep B over a decade. Mortality rates were determined, with deaths grouped according to causes including HBV-related issues, cancer, cardiovascular problems or other/unknown causes. HBV-related causes were subdivided into decompensated cirrhosis (DCC) or hepatocellular carcinoma (HCC). DCC was defined as ascites, portal hypertension or hepatic encephalopathy.

Thirty people with hepatocellular carcinoma received three doses of the modified virus – codenamed JX-594 – directly into their liver tumour over one month. Half the volunteers received a low dose of the virus, the other half a high dose. Members of the low and high-dose groups subsequently survived for, on average, 6.7 and 14.1 months respectively. By contrast, trials several years ago showed that sorafenib, the best existing medication for this cancer, prolonged life by only three months.

Two of the patients on the highest viral dose were still alive more than two years after the treatment. “It’s a very substantial survival benefit,” says Laurent Fischer, president of Jennerex, the company in San Francisco developing the treatment under the trade name Pexa-Vec. Besides shrinking the primary tumour, the virus was able to spread to and shrink any secondary tumours outside the liver. “Some tumours disappeared completely, and most showed partial destruction on MRI scans,” says David Kirn, head of the study at Jennerex. Moreover, the destruction was equally dramatic in the primary and secondary tumours.

“This clinical trial is an exciting step forward to help find a new way of treating cancers,” says Alan Melcher of the University of Leeds, UK, who was not involved in the study. “It helps demonstrate the cancer-fighting potential of viruses, which have relatively few side effects compared with traditional chemo or radiotherapy,” he says. “If it proves effective in larger trials, it could be available to patients within five years.”

The fact that the virus appears able to spread to secondary tumours suggests that simply injecting the virus into the bloodstream may be effective. A trial to compare this treatment with injecting the virus directly into a tumour is under way.

• Abridged from newscientist.com (10 Feb 2013) http://tinyurl.com/d2gc2z8

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Four hundred and thirty-nine patients died during the study, including 307 males, for an overall mortality rate of 7.5 per 1,000 person-years.

Death was related to HBV in 205 cases (165 males). Mortality rates were higher among males than females overall (8.9% vs. 4.1%) and for HBVrelated causes (4.8% vs. 1.2%).

Deaths from HCC were twice as common as deaths in males from all other cancers combined; and represented 70% of cancer deaths among males and 37% among females.

Advanced age, male sex and pre-existing comorbidities, including kidney disease, cancer, diabetes or cardiovascular disease, were predictive of all-cause mortality. Only advanced age was predictive of HBV-related mortality for males and females.

“Hepatitis B was a major cause of mortality in those infected with HBV and this mortality increased dramatically with increasing age,” the researchers concluded. “Of note … those with hepatitis B die more often from HCC than from all other cancers put together. This has implications for the priority that should be given to ageappropriate HCC screening in this population.

Even more important are the appropriate screening for HBV in high-risk populations, appropriate use of anti-HBV medications, and ultimate eradication of this disease through universal HBV vaccination.”

• Abridged from healio.com (11 Jan 2013) http://tinyurl.com/bk9p9kl For detailed information on hep B health outcomes, phone the Hepatitis Helpline or visit www.hepbhelp.org.au/

research updates New Research into survival of HCV outside of the syringe

Tattooing poses increased hep c risk

Germany – Juliane Doerrbecker from the Medical School of Hannover and Helmholtz Centre for Infection Research and colleagues in Germany looked at the risk of HCV transmission associated with water used to dilute drugs, water containers, and filters (such as cotton).

USA – Hepatitis C virus (HCV) infection is more common in people who have had a tattoo, research shows. Significantly, this relationship held true in patients without other risk factors for infection, such as a history of blood transfusion or injecting drug use.

Experiments were designed to replicate the practices of people who inject drugs, with routinely used injection equipment.

“These findings have important implications for screening non-injection drug users in the United States, particularly since the prevalence of tattooing is on the rise and intravenous drug use is on the decline,” say Fritz Francois and colleagues.

The study found that HCV was able to survive for three weeks in bottled water, although its infectivity decreased over time.

The study included 1930 patients with chronic HCV infection and 1941 HCV-negative controls.

Additionally, infectious virus particles could be detected in water containers even after rinsing.

Also, HCV was also associated with filter material, with about 10% of the original amount of virus remaining detectable after 24 to 48 hours.

“This study demonstrates the potential risk of HCV transmission among people who inject drugs who share water, filters, and water containers,” the study authors concluded. “These findings add strong evidence to the high transmission rate of HCV when sharing these drug preparation materials and should help in the design of prevention strategies aimed at reducing HCV transmission.”

“Prevention messages and campaigns should be revised to notify people who inject drugs to the importance of eliminating all equipment-sharing practices” and harm reduction programs should supply other injection equipment along with syringes.

Injecting drug use (64.9 vs 17.8%) and blood transfusion prior to 1992 (22.3 vs 11.1%) were both significantly more common in HCV-positive patients than HCV-negative patients, as expected.

However, the authors also found that having had at least one tattoo was associated with a 3.7fold increase in the odds of HCV infection, after adjusting for confounders, such as injecting drug use, blood transfusion history and body piercings.

HCV could be transmitted during tattooing through the use of nondisposable needles, inadequate sterilisation of equipment, or the reuse of ink contaminated with blood, explain the authors.

However, previous studies into the association between HCV-infection and tattooing have led to conflicting results, and have not always adequately controlled for additional risk factors.

J Doerrbecker, et al. Transmission of Hepatitis C Virus Among People Who Inject Drugs: Viral Stability and Association With Drug Preparation Equipment. Journal of Infectious Diseases 207(2):281-287. January 15, 2013.

“Our study confirms the association between tattoo exposure and hepatitis C infection in a very large ethnically diverse population of HCV cases and uninfected controls,” write Francois and colleagues in Hepatology.

• Abridged from hepctrust.org.uk (11 Jan 2013) http://tinyurl.com/cm7xwuw

They say that their findings could lead to changes in HCV screening practices. “All patients who have tattoos should be considered at higher risk for HCV infection and should be offered HCV counseling and testing.”

• Abridged from news-medical.net (21 Jan 2013) http://tinyurl.com/d567fvq

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pharmaceutical treatment Triple combination treatment

Standard combination treatment

Triple combination treatment for hep C consists of either Incivo (telaprevir) or Victrelis (boceprevir), taken with standard combination treatment (peginterferon alpha and ribavirin).

Standard combination treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily. Standard combination treatment lasts between 24 or 48 weeks (depending on a person’s genotype and liver condition) and gives a 50-80% chance of cure (depending on a person’s genotype).

This new treatment is for people aged 18 years and over who have hep C genotype 1 and compensated liver disease (no serious liver damage).

Triple combination treatment generally lasts between 24 and 48 weeks (depending on a person’s treatment history, liver condition and/or response) and gives a 70-80% chance of cure.

Studies show there is increased risk of anaemia and skin rash, and other side effects. These will be explained in detail by your treatment team and will be carefully monitored by them.

Subsidised combination treatment for people with chronic hep C is available to people (aged 18 years or older) who satisfy all of the following criteria: Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive.

Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner).

Men undergoing treatment and

their female partners must use effective forms of contraception (one for each partner). Female partners of men undergoing treatment must not be pregnant.

Duration and genotypes People with genotype 1, see Triple combination treatment, left.

For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks.

For people with genotype 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks.

Monitoring People with genotype 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.

For more detailed information on current treatment options, see our Treatment Overview factsheet... http://tinyurl.com/bqbrwr9

CAUTION Treatment with interferon has been associated with depression and suicide in some people. If you have any history of suicide ideation or depressive illness, talk to your treatment team. They will be able to provide additional treatment monitoring and support.

A potentially serious side-effect of ribavirin, telaprevir or boceprevir is anaemia (an imbalance of red blood cells). During treatment your blood is monitored closely, especially in the first few weeks, and if problems arise, doses of your treatment drugs may be lowered or other drugs may be given to help manage your side effects. Skin rash is another side effect that is closely monitored.

Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.

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complementary medicine People with genotype 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24.

Similarly, people with genotype 2 or 3 and cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12.

You and your clinician should monitor your level of liver damage. Fibroscan is the preferred option although in some cases, liver biopsy may be suggested.

NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy.

Phone the Hepatitis Helpline for the contact details of your nearest centre and to find out where your nearest fibroscan is located.

In NSW, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment.

• Hepatitis NSW For more information, please phone the Hepatitis Helpline and see our Two Hep C Questions booklet.

Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits.

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects. A similar trial, but on a larger scale, was later carried out. A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (contact the Hepatitis Helpline regards the above mentioned trials).

Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments.

Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to.

• Will they consider all relevant diagnostic testing?

• Will they consult with your GP about your hepatitis?

• Is the treatment dangerous if you get the prescription wrong?

• How has this complementary therapy helped other people with hepatitis?

• What are the side-effects?

• Are they a member of a recognised natural therapy organisation?

• How have the outcomes of the therapy been measured?

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer.

If you are not satisfied, shop around until you feel comfortable with your practitioner.

You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies.

It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee.

It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done.

It is best if your doctor, specialist and natural therapist are able to consult directly with one another.

If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist.

If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis.

Additionally, they should be members of a relevant professional association.

Phone the Hepatitis Helpline (see page 64) for more information and the contact details of relevant professional associations.

• Hepatitis NSW.

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For more information, please phone the Hepatitis Helpline.

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support and information services Hepatitis Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services.

•

9332 1599 (Sydney callers)

•

1800 803 990 (NSW regional callers).

Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment.

This is a free and confidential phone-based service which anyone in NSW can access. Please phone 1800 803 990 (free call NSW).

Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales detainees and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above.

Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training.

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Alcohol and other drugs services People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW).

NSPs Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Helpline.

Family Drug Support FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186.

Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.

Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card and they keep all medical records private.

Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies.

Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres.

support and information services Culturally and linguistically diverse communities The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes information resources in some languages.

The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au AHCS online hep C support forum Australian Hepatitis C Support – an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338.

Coffs Coast Hep C support group This is a monthly meeting for people living with hep C, supportive others and on treatment, or thinking of treatment. The meeting is facilitated by healthcare professionals. For more information contact Helen Young 6656 7865.

Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789.

Nepean Wednesday groups This is a relatively new group open to people who are considering or preparing for treatment, undergoing treatment and post treatment. Family and significant others are welcome to attend.

The group meets every two weeks at the Nepean Centre for Addiction Medicine, Nepean Hospital on Wednesdays between 10.30 and 12.00. The first session for 2013 is on 9 Jan and will be a mixed session but each alternate session will be for women only.

Our aims for this group are to provide social support, information and encouragement to people affected by HCV. For more information please contact George Klein on 0411 028423.

Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539.

Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0412 126 707 or 6588 2750.

Gosford: 5.30pm-7pm on the 3rd Thursday of each month at the Health Services Building, Gosford Hospital.

Wyong: 1pm-2.30pm on the first Thursday each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609.

Want to get involved in lobbying for, or, supporting hep services in your local area?

Wollongong hep C support group A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am-11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.

Contact David Pieper, the Hepatitis NSW C me Coordinator, at dpieper@hep.org.au

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promotions

HALC

legal centre is now able to offer free help with hep C legal issues

HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with: • • • •

Superannuation, insurance and employment Privacy and healthcare complaints Immigration, discrimination and vilification Enduring Power of Attorney and Enduring Guardianship.

We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.

promotions The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs.

Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time.

It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life.

People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.

Please phone 02 6198 9800.

A historical perspective – september 1998 Headlines from 15 years ago: • • • • • • • • •

PCR given – yet kept – by Commonwealth Parliamentary committee considers hep C Chronic illness – an introduction Treat the disease, not the person Painkillers and the liver Adaptation to chronic illness Hepatitis C and life insurance Hepatitis C and employment The doctor/patient role in hep C management • A plea for change to ignorant and unacceptable funeral practices • Living with chronic illness: does the route of transmission make a difference?

If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy.

• Taken from The Hep C Review, Edition 22, September, 1998.

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Stay up to date with what’s happening in the hepatitis sectors. Take a look at the WDP website. It includes a training directory and has information and resources on harm reduction and health promotion, and provides updates on upcoming events.

ASHM runs ongoing WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details.

We invite you to use our website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at wdp@ashm.org.au or phone Ronnie Turner, Program Manager, 02 8204 0722.

www.wdp.org.au

noticeboard

acknowledgements

Upcoming events

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Miriam Chin Paul Harvey Alastair Lawrie Stuart Loveday Andrew Smith Jeffrey Wegener

World Hepatitis Day – 28 July http://tinyurl.com/bjs93na NSW Hepatitis Awareness Week – 22 to 28 July http://tinyurl.com/b559t66 National Hepatitis Health Promotion Conference, Sydney, 14-15 November http://tinyurl.com/3pr4dcv

Complaints

S100 treatment advisor: Kristine Nilsson (AGDHA)

If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2 or see right for our phone number and postal address.

Proofreading/subediting: Prue Astill Christine Berle Gerard Newham Adrian Rigg Cindy Tucker First dog on the moon comic: Andrew Marlton

Do you want to help?

We are a membership organisation, governed by a board elected primarily from our membership.

We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. Image / Google Images

As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • taking part in our C me community advocacy project • providing content for Hep Review and Transmission Magazine.

• proofreading for Hep Review and other Hepatitis NSW publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker.

Want to find out more? Please phone the Hepatitis Helpline (see right).

Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Lisa Camillo, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak

Contact Hep Review by phone: 02 9332 1853 fax: 02 9332 1730 email: pharvey@hep.org.au post: Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in: Level 4, 414 Elizabeth St, Surry Hills, Sydney

Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health.

The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body.

Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions.

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ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.

Hep Review magazine

Edition 80

June 2013

67

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Janssen-Cilag Pty Ltd, ABN: 47000129975, 66 Waterloo Road, Macquarie Park, NSW 2118 Australia. www.hep.org.au Date of Preparation: 28th February 2013, AU-INC0150.