Hep Review ED62

The Hep C Review Spring

September 08

Edition 62

Hep C treatment – where to from here?

NSW hep C care & treatment review Action needed for hep C treatment Antiviral therapy: facts and myths Disclosure and hep C treatment A good night’s sleep Mediterranean diet and diabetes The Hep C Review

ED62

September 2008

1

editor’s intro

H

i everyone and welcome to ED 62. This particular edition finds me following up on results from a recent liver biopsy, feeling very much part of our affected community. In regards to ‘community’, I’ve also been reflecting on the results of our readership survey (see p40). It’s really heartening that the magazine seems so well regarded by you – the readership. Especially well regarded were our news items, feature articles, research updates and personal stories.

Not everyone will be interested in every article. I guess it’s a case of trying to ensure that everyone can find a few (or hopefully, many) items that they’ll enjoy.

As with all others, I’ve certainly enjoyed working on this edition. It’s one that features a bit of a focus on treatment services in NSW. Stuart Loveday’s article following up on the NSW Health Department’s review of hep C care and treatment services is well worth reading, as is Adam Creswell’s article, Action needed for hep C treatment.

We’re also carrying a couple of articles from frontline hep C treatment workers: one about treatment facts and myths, the other about treatment disclosure. Additionally, you will find a two-page research update summarising a study of people’s treatment experiences. I hope you enjoy these articles; if you are not currently considering treatment, they’ll certainly provide good background to current treatment issues.

Other goodies include: our personal stories, an article about the Sala Baluard Spanish injecting centre, an article about getting good sleep, our readership results, and a neat little time-travel piece that showcases the Council, as we were, in September 1992 (p48).

Paul Harvey, Editor

Council keyhole

A new website – building on past successes Around 12 months ago, the Hepatitis C Council of NSW secured funding from NSW Health for a thorough review and redevelopment of our website. We went back to basics; starting with defining our target audience, what they wanted, at what level it should be pitched, and in what formats it should be.

Research revealed the demographics of Australian internet and web usage. It also showed what was currently expected of websites and industry standards for layout and design. We reviewed our existing site’s prior statistics to see what was popular. We initiated an online survey assessing what people thought about the site and how they felt it could be improved.

We realised that we needed a more multi-media and personable website. It also needed to meet the international Hon Code and Australian Government Health Insite accreditation standards.

Six-months on, we have a site featuring video and audio and a design relying heavily on images of people.

The customer is always right We began our layout and navigation makeover from the perspective of the customer. We asked our selves, how would the average site visitor expect to find our various services and resources?

Services where there was client dialogue are grouped under the heading “Talking hep C”. This part of the site carries pages for our Helpline and Hep Connect services, the vidcasts and podcasts, hepCaustralasia peer support forum and text based personal stories.

Continued on page 38.

Weblink of the month – Beating tiredness Feeling tired all the time is horrible, and working out the cause is difficult. But effective treatments could be close to hand. Check out the following webpage: http://www.abc.net.au/health/healthyliving/video/ date2008.htm?url=http://www.abc.net.au/health/healthyliving/video/ clips/2244344.htm Front cover image, Lost in the Labyrinth, by MarcelGermain, via www.flickr.com

2

www.hepatitisc.org.au

acknowledgements Calling all members

Hep C Review editor: Paul Harvey Editorial Committee: Tim Baxter Kay Bazley Megan Gayford Paul Harvey Stuart Loveday Thuy Van Hoang

Look inside for your special Membership Update (p45).

Our 2008 membership year began on 1 March – we look forward to receiving your applications or renewals.

It’s now easier than ever – join or renew securely online... www.hepatitisc.org.au Or use the form at the back of this magazine.

Seeking your personal story

HCR medical & research advisors: Dr David Baker Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Geoff McCaughan Dr Cathy Pell Assoc Prof Carla Treloar Dr Ingrid van Beek Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading: Andi Andronicos Prue Astill Sarah Bowman Judith Campbell Andrew Dunstall Margaret Hancock Adrian Rigg Maureen Steele Cindy Tucker Bill Whelan

Personal stories provide balance to our information articles.

They are often written by people with hep C, but also by family members or friends. The experience of health care workers would be equally valuable to many readers.

Comic: Andrew Marlton: firstdog@crikey.com.au

Please consider writing in with your story. Published articles attract a $50 payment.

Author’s name and contact details must be supplied (for editorial purposes) but need not be included in the printed article.

The Hepatitis C Council of NSW is an independent, community-based, non-profit, membership organisation. We are funded by the NSW Health Department.

Articles should be between 400800 words.

phone: 02 9332 1853 fax: 02 9332 1730 email: hccnsw@hepatitisc.org.au

Publication of submitted articles is at the discretion of the Editor and Editorial Committee.

Articles considered unnecessarily inflammatory or vilifying will not be published.

We’re really looking forward to receiving your articles.

website: www.hepatitisc.org.au postal address: PO Box 432 DARLINGHURST NSW 1300 AUSTRALIA Hep C Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Aside from HCCNSW editorial comment, views expressed in this magazine or flyers enclosed with it, are not necessarily those of the Hepatitis C Council of NSW. Neither are such views necessarily those of our funding body.

Contributions to The Hep C Review are welcomed and are subject to editing for spacing and clarity. Contributors should supply their contact details – although we do not publish such details unless asked. We’re happy for people to reprint information from this magazine provided that The Hep C Review and any particular author/s where such exist are credited, and the edition number and date are highlighted. This permission does not apply to graphics or cartoons.

Many of these are not subject to public domain and must not be reprinted without permission of original artists/publishers.

If you have any doubts, please contact us.

ISSN 1440 – 7884

The Hep C Review

ED62

September 2008

3

contents Letters Contracting hep C – why some and not others? 5

Opinion End our jailhouse blues

32

News Tattoo gun backfires on boy Quebec plans safe-injection centres Czech Republic’s syringe vending machines Natalie Cole’s hep C diagnosis Californian prison system sued R1626 shows significant benefit Cuba set to eradicate hep B China unblocks hep B website Access to free hep B vaccination Support site for educators launched Clinicians respond to hep B crisis Queen’s honour for pioneering virologist Chopped Liver Chopper’s Liver Controversial drug leaflet withdrawn Choose to Use not “pro-drugs” MSIC head moves on Cathy Yip – a tribute Stem cells hold key to liver cure

Promotions Do you feel lost at C? “Drop in” event Jailbreak radio show Access all areas Centre for Digestive Diseases trial Genetic factors to response trial Hep C treatment promo resources Support needs of carers study Hep Connect service HALC legal centre Online & connected Hep C bookmarks Hepatitis B – what you need to know Post-treatment experiences study 6th Australasian Conference on Viral Hepatitis

43 43 44 44 44 45 46 46 47 47 48 49 49 49

5 6 6 6 7 7 8 8 8 8 9 9 10 10 11 11 11 12 12

Features HCCNSW responds to C&T review 13 Action needed for hep C treatment 16 Greg Bell, 1951-2008 17 Antiviral therapy: facts and myths 18 Social determinants of health 20 Disclosure and hep C treatment 24 Sala Baluard: Spanish harm reduction 28 A good night’s sleep 34 A connection between diabetes and hep C 35 Fight against hep B is also a battle against fear 36 B Positive – a book about hep B (book review) 37 Mediterranean diet and diabetes 39 2008 readership survey 40 Testing new drugs 41 My story The bite of the monkey – Floyd’s story Far from Superman – Allan’s story It was too late – Gary’s story

4

www.hepatitisc.org.au

14 23 29

Research updates Disease progression – modifiable and nonmodifiable factors 50 Diabetes may increase hep C liver cancer risk 50 Hep C prevalence and risk factors in Aboriginal and non-Aboriginal adolescent offenders 51 Citalopram effective for hep C treatment related depression 51 Experiences of hep C treatment and its management 52 Regular features Weblink of the month – beating tiredness 2 Council keyhole – A new website 2 The most precious gift (organ transplant) 5 Conference update 10 Resource of the month - I Have Hep C 12 Centrespread poster – protecting other people 30 Hello Hep C Helpline – caring for carers 42 Membership matters 45 A historical perspective 48 Combination therapy access infomation 54 Complementary medicine 55 Support / info services 56 Noticeboard 58 Membership form / renewal / tax invoice 59

letters news Contracting Tattoo gun backfires hep C – why some on boy and not others?

Mo, from Marrickville, asked in our last edition (ED61, p5), why it is that some long-term drug users don’t seem to contract hep C?

Australia – Tattooists have condemned the actions of a 16-year-old who bought a tattoo gun over the internet and used it on other children.

There are unanswered questions about why some people don’t seem to contract hep C. Given that their injecting practices are probably similar to others, it could be that these people do contract hep C. Perhaps their immune response is stronger and they are able to clear the virus in the initial 6-12 month period and avoid chronic infection.

Queensland police seized the tattoo gun after they were told the boy was tattooing other boys’ and girls’ backs, wrists, chests and breasts with stars, hearts and words.

A couple of studies could help answer this question: the Australian Trial in Acute Hepatitis C (ATAHC) and the National Centre in HIV Social Research’s study, Injecting practice among heterosexual hepatitis C sero-discordant couples.

The National Centre sees this as a very important question. As such it has applied and re-applied for research funding to answer it. As of yet they have been unsuccessful. They will seek to identify new funding avenues to hopefully start a project on this issue as soon as they can.

We will report more on this question as soon as news becomes available.

•

HCCNSW

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.

“Police received information from a concerned parent that a juvenile was in possession of a tattoo gun and was tattooing other juveniles and adults in Mundubbera,” Sergeant Tully Anderson said.

“Investigations have revealed a possible list of six juveniles that have been tattooed.”

Sgt Anderson said the boy had purchased the gun over the internet for $212.

Harsh penalties apply to illegal tattooing activity.

“A person must not perform tattooing on a minor and it’s a maximum penalty of six months in prison and there’s no leeway, even if parents have consented,” the police officer said.

Yesterday the News-Mail conducted a search on internet trading site eBay, which revealed about 130 tattoo equipment items for sale. The products were priced at about $190 and one seller claimed that even hobbyists could use the tattoo guns.

Bundaberg tattooists “Statue” Rogers and “Borze” Davidson have been working in the industry for 23 years and 20 years respectively. They said all operators had to abide by stricter health and sterilisation guidelines than doctors’ surgeries.

Both warned against the dangers of blood-borne diseases like hep C, which can be spread by using dirty needles in a tattoo gun or a dirty work surface.

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

“We use a new needle with every client. They are single-use needles kept in sterile packets and disposed of, once used, in a sharps container,” Mr Davidson said.

People seeking more information about donating their liver should contact Lifelink, the NSW/ACT network that coordinates organ donation.

• Abridged from www.news-mail.com.au via C-Network

Please phone 02 9229 4003.

The Hep C Review

ED62

September 2008

5

news Quebec plans safeinjection centres Canada – Health officials in Quebec are preparing to open a supervised injection site in Montreal in coming months, and say it could become one of many in the province.

The idea of creating a network of injection sites is already part of Quebec’s public health plan, but a recent court decision in British Columbia has given momentum to the project.

Vancouver is the only other city in North America to have a safe-injection site for injecting drug users. Set up as a pilot project in 2003, Insite was operating under a limited exemption from federal drug laws until a ruling last May that granted it a permanent constitutional exemption.

British Columbia’s Supreme Court declared Insite to be a health facility and said it was unconstitutional to prevent drug users from using its services. That ruling appears to have cleared one of the legal obstacles to similar sites opening in other parts of the country, namely running afoul of federal authorities.

“It’s an interpretation that views injection sites as health services and those are under provincial jurisdiction,” said Quebec public health director Alain Poirier.

Quebec already has close to 800 locations where heroin users and other injecting drug users can exchange needles. For Poirier, establishing safeinjection sites is the logical next step.

He acknowledged that the facilities in Quebec would be modelled partly on Insite, which offers drug users clean needles, a safe place to inject and access to counselling and detox.

Insite enjoys a long list of supporters: lawenforcement officers and political leaders among them, who say it benefits users and the public by keeping drug use off the streets.

• Abridged from http://canadianpress.google. com (16 July 2008)

Czech Republic’s syringe vending machines Europe – The Czech Republic recently installed automatic syringe machines in the capital Prague in an effort to curb the spread of hep C, HIV and other blood-borne diseases among injection drug users, Prague Daily Monitor reports.

The project was launched by Progressive-os and provides constant access to clean syringes, even when pharmacies are closed.

“The use of clean syringes prevents the spreading of infectious diseases, such as hepatitis and HIV,” said Vojtech Janouskovec, head of the progressive-os No-Biohazard program.

If the pilot project in Prague is successful, it could be expanded to other parts of the country, Prague Daily Monitor reports.

• Abridged from www.kaisernetwork.org via www.dailydose.net (5 Jun 2008). Also see http://progressive-os.cz

Natalie Cole’s hep C diagnosis USA – Singer Natalie Cole has been diagnosed with hep C, her publicist said in a statement yesterday. He said the disease was revealed during a routine examination and was likely caused by her drug use years ago.

“I am embraced by the love and support of my family and friends; I am committed to my belief in myself and in my abiding faith to meet this challenge with a heartfelt optimism and determination,” said Cole.

Her physician said Cole has had a terrific response to her medication and, while awaiting final follow-up testing, is now virus negative.

• Abridged from Sydney Morning Herald, 17 July 2008

6

www.hepatitisc.org.au

news Californian prison system sued

R1626 shows significant benefit

USA – Californian prisoners with hep C aren’t getting the health care they need while they’re behind bars, according to a lawsuit filed in a US District Court.

Italy – Roche’s investigational therapy for hep C, R1626, has shown a significant end-oftreatment response rate when given with current combination treatment. The experimental drug also shows a high barrier to the development of resistance.

It estimates that as many as 40% of the state’s inmates have hep C. About 30,000 are expected to report difficulty getting adequate care, which is why the suit seeks class-action status, said Shawn Khorrami, the prisoners’ lawyer.

The filing comes on the heels of collapsed settlement talks in a different lawsuit seeking to reduce the prison population. If the state loses at trial, the federal judicial panel could order inmates to be released early.

After four weeks of treatment with this triple combination, followed by 44 weeks of standard combination treatment, levels of HCV were undetectable in 84% of patients infected with the hard-to-treat, genotype 1 virus.

This was higher than patients treated with combination treatment alone for the entire 48week treatment period (65%).

The lawsuit estimated the prison population at 190,000 inmates, but contrary to the filing, the state says its prisons hold about 159,000 inmates.

R1626 was discovered and developed at Roche and belongs to a class of antivirals called polymerase inhibitors.

The issue is whether overcrowding violates inmates’ rights, that leads to among other things, inadequate health care. A trial is set for November.

“These results demonstrate that R1626 holds significant promise to potentially increase the number of hep C patients who can be successfully treated,” said Dr David Nelson, Director of Hepatology and Liver Transplantation at the University of Florida, Gainesville, Florida.

Lead plaintiff Kevin Jackson is an inmate in California State Prison at Solano. The filing says that, despite a 2007 diagnosis of an advanced stage of the disease, he was repeatedly refused treatment.

Khorrami said that, despite federal efforts, the problem has persisted.

“We’re in no better shape now than we were several years ago. Nothing has happened,” Khorrami said.

The news was reported at the 43rd Annual Meeting of the European Association for the Study of the Liver (EASL), held recently in Milan, Italy.

• Abridged from www.earthtimes.org Also see other news on evolving treatments: ED61, p9, p14; ED60, p6; ED58, p14; ED 57, p21.

• Abridged from the San Francisco Chronicle via www.sfgate.com

The Hep C Review

ED62

September 2008

7

news Cuba set to eradicate hep B

Access to free hep B vaccination

Cuba – With seven cases reported in 2007 and only four so far this year, Cuba is poised to eradicate hep B transmission with a highly effective vaccine produced in the country, reports Prensa Latina news agency.

Australia – NSW Health has now established a mechanism to expand access to free hep B vaccination to clients of hep C and HIV prescribers, including clients of all accredited providers within the Opioid Treatment Program.

In 1992, when Cuba’s immunisation program began, over 2,100 cases were reported. Today, all Cubans under 26, and large parts of the rest of the population, have been immunised and the infection rate has been cut by 99.2%.

This represents a remarkable opportunity to reduce morbidity and mortality rates attributed to hep B coinfection.

The vaccine is under large scale production at the Genetic Engineering and Biotechnology Centre in Havana and is marketed in over 40 countries.

• Abridged from www.radionuevitas.co.cu (23 June 2008) via www.hcvadvocate.org

Eligibility will be for those people from priority populations (regardless of hep C or HIV status), who have not been documented or do not believe themselves to have previously received a primary course of hep B vaccine.

For further information contact Sally Spruce, ASHM Primary Care Liaison Officer on (02) 6656 7848.

• Abridged from www.ashm.org

China unblocks hep B website China – A website dedicated to helping China’s 100 million hep B virus carriers is back up and running, after having been blocked inside the country for 43 days.

“This is good news,” Chinese health activist Lu Jun said.

The shutdown of www.hbvhbv.com was part of China’s ever-tightening security in the lead-up to the Olympic Games, Lu said.

Virus carriers face shocking job discrimination in China, and the website had become a vital forum for carriers to let off steam and seek mutual support.

Neither Lu nor staff at Beijing’s Yirenping Centre, a counselling office for hep B carriers, were notified by government that the site was to be unblocked.

• Abridged from www.thestar.com via www. hcvadvocate.org

8

www.hepatitisc.org.au

Support site for educators launched Australia – Hepatitis Australia has formally launched its Hepatitis Education site – www. hepedu.org.au – an online resource for people who educate others about viral hepatitis.

There are various people in the community that provide hep C education. This may be their primary role (e.g. workers in state and territory hepatitis councils), or it could be a small component of an education curriculum (e.g. secondary school teachers discussing bloodborne viruses with students).

The site supports these workers and provides links to accurate and relevant information about hep C. The website was developed with funding from the Australian Department of Health and Ageing.

• Abridged from www.hepatitisaustralia.com via www.dailydose.net

Clinicians respond to hep B crisis Australia – A group of leading Australian doctors and health and prevention experts have joined together to help curb the impact of hep B, coinciding with the launch of World Hepatitis Day and Hepatitis Awareness Week.

The National Hepatitis B Alliance will provide a forum for these experts to exchange ideas, lobby government, and allow practitioners and researchers working in viral hepatitis to focus on specific needs of patients.

“This largely is an overlooked condition which impacts greatly on the lives of many Australians.

We now need to work with GPs to improve the outcomes for chronic hep B patients,” said Professor Darrell Crawford, President of the Gastroenterological Society of Australia.

news Queen’s honour for pioneering virologist Australia – A leading virologist who helped open the path towards a hep B vaccine has been recognised in the recent Queen’s Birthday Honours.

South Australian immunologist Professor Chris Burrell has been made an Officer in the General Division of the Order of Australia (AO) for service to medicine as a specialist in infectious diseases, particularly in the field of virology.

Burrell, who will retire from his position as professor of microbiology and immunology at the University of Adelaide next month, says the award “acknowledges a long effort I’ve made in infectious diseases”.

“People with chronic hep B infection incur a high burden of chronic disease and around 30% of these people will die prematurely of liver cancer or other liver disease,” said Dr Andrew Penman, Chief Executive Officer of The Cancer Council NSW. “We can respond to this challenge more effectively by applying all our knowledge and resources in a coordinated public health strategy.”

Director of the Institute of Medical and Veterinary Science (IMVS) in Adelaide, Burrell was part of the Edinburgh University research team that in the late 1970s became the first to clone the DNA of a human virus.

The Alliance seeks Commonwealth Government support on issues such as making viral load testing available to patients living with hep B. This test, which helps assess risk of liver cancer, is not reimbursed by Medicare and is therefore costly to patients, hindering the selection of appropriate treatment.

He came under the influence of the man he describes as a wise mentor and great friend, Professor Barrie Marmion.

Another of the Alliance’s key goals is to create tools for GPs and other health practitioners to monitor the health of chronic hep B patients, allowing timely identification of cancer and liver disease and appropriate treatment.

Burrell, who has also made inroads in research into the human papilloma virus and HIV, is modest about his career achievments.

“There is now good evidence to suggest the earlier we diagnose and treat hep B carriers, the less likely it will develop into liver cancer, due to more effective anti-viral therapy,” said Professor Sharon Lewin, Director Infectious Diseases Unit, Alfred Hospital, Melbourne.

After completing his PhD, Burrell went to the University of Edinburgh to take up a lecturer’s position in the medical school.

As part of Marmion’s team he helped fight a severe outbreak of hep B at the Royal Infirmary of Edinburgh, launching his lifelong interest in the virus.

“In the whole scope of what medical research has achieved, what I’ve done is quite small and circumspect,” says Burrell.

“But everyone’s contribution counts and everyone’s contribution adds up.”

• Abridged from www.abc.net.au/health/ healthnews/

• Abridged from an NHBA press release, 19 May 08.

The Hep C Review

ED62

September 2008

9

news Chopped Liver Australia – Audiences were moved by the powerful performances of Melodie Reynolds and Isaac Drandich from the Ilbijerri Aboriginal and Torres Strait Islander Theatre Cooperative who performed the theatre show Chopped Liver in Aboriginal communities around the state.

The play alternates between drama and comedy, humanising the life experiences of an Aboriginal couple with hep C in an effort to break down social boundaries surrounding the virus. It raises awareness and brings opportunities for discussion, prevention and support.

Aboriginal communities across Australia often exist within a context of hardship and disadvantage. They also experience twice the rate of hep C found in the general population.

Aboriginal people are also overrepresented in prisons, where hep C infection is 40 times that of the general population.

Given these factors, Chopped Liver is a crucial tool to break through barriers and raise awareness within communities.

The five week tour began in mid-June. Twentyeight shows were performed at centres including Kempsey, Nowra, Queanbeyan, Broken Hill, Bourke, Walgett, Orange, Mt Druitt and Glebe.

“It’s the perfect mix of drama, humour and educational content that is not confronting and hits the mark each time with its accuracy and contextual appropriateness,” said one healthcare worker.

Local Aboriginal sexual health workers throughout the state were instrumental in the success of the tour, helping organise local interest before the actors hit town.

The tour was a collaboration involving NSW Health, the Ilbijerri Aboriginal and Torres Strait Islander Theatre Cooperative, the Aboriginal Health & Medical Research Council, regional Aboriginal sexual health workers and HCCNSW. • By Harpreet Kalsi, Education & Development project worker at HCCNSW.

10

www.hepatitisc.org.au

Chopper’s liver Australia – Mark “Chopper” Read says he is dying, but would refuse a liver transplant to save his life.

“I am dying and I accept that,” the notorious convict says. “All I want now is to do the right thing and make sure my two young boys are looked after.”

Read has hep C, but has ruled out a life-saving liver transplant because he does not believe he deserves one.

“A transplant would save me, but why would anybody give 53-year-old Chopper Read a liver over and above an 11-year-old girl with liver cancer?

“They wouldn’t – and I wouldn’t ask.”

Doctors have given Read two to five years to live. More recently, they said he would die in 20 months if he did not stop drinking.

“The diagnosis shocked me and I hit the bottle hard,” Read says.

“I drank and drank and drank. If I kept drinking, I would’ve been dead quicker.”

Read does not want to know more about hep C. He sees a doctor twice a week and is taking medication.

“I do what I’m told and try to live a clean life,” he says.

• Abridged from The Herald Sun, 15 June 2008.

On 25 June in the Adelaide Advertiser it was reported that Mark Read was considering a ‘split liver’ transplant from a friend. ED

news MSIC head moves on

Controversial drug leaflet withdrawn

Australia – It’s been a long and arduous journey for Dr Ingrid van Beek, Medical Director of Australia’s first Medically Supervised Injecting Centre (MSIC). Dr van Beek, who for eight years put her heart and soul into this ground-breaking public health initiative, recently announced her resignation.

Australia – The NSW Government has ordered that all drug education material for young people be reviewed. Controversy over a leaflet suggesting ways to minimise the risk of taking illegal drugs sparked the review.

The leaflet, Choosing to use but wanna keep your head together?, was developed by Sydney West Area Health Service and advised teenagers on what to do if they chose to take substances like ecstasy and cannabis.

Distributed at schools and community facilities, it contained advice for young people, including to wait until they turn 18 before experimenting with drugs, and then to “use only small amounts and not too often.”

State Health Minister Reba Meagher recalled it to be pulped, saying its advice about what people should do if they take drugs is unacceptable.

The Kings Cross service received a four-year trial extension by the NSW Government in June last year, making it a ten-and-a-half year scientific trial.

“It is now well-established the MSIC has been effective in reducing the various drug-related harms associated with street-based injecting to both individual drug users and the greater community,” says Dr van Beek.

“My one hope is that the MSIC’s trial status is revisited prior to the next State election. The MSIC’s apparently endless trial status is a barrier to its integration with the rest of the public health system. It also ensures that the service remains politicised,” says Dr van Beek.

“The Iemma Government is 100% committed to harm minimisation, but we will not tolerate any message to young people that implies that it’s okay to experiment with drugs.”

• Abridged from www.abc.net.au/health/ healthnews/ (17 Jun 2008).

• Abridged from an MSIC press release.

Choosing to Use not “pro-drugs”

Conference update

Australia – The Sydney West Area Health Service has denied a leaflet it has published encourages young people to take drugs.

The controversial leaflet, Choosing to use but wanna keep your head together?, advises teenagers on what to do if they choose to take substances like ecstasy and cannabis.

“It’s been a great privilege to work in [this] field .. my only disappointment is that the MSIC continues to operate on a trial basis,” says Dr van Beek.

‘Hepatitis B & C at the Crossroads’ The 6th Australasian Conference on Viral Hepatitis. 2022 October 2008 in Brisbane. http://hepatitis. org.au/ Also see p49. ED

A spokesperson for the Area Health Service said the leaflet does not encourage young people to take drugs: “the leaflet clearly states that there is no safe drug use, but its advice is based on the realistic view that most young people experiment.”

• Abridged from www.abc.net.au/health/ healthnews/ (17 Jun 2008).

The Hep C Review

ED62

September 2008

11

news Cathy Yip – a tribute Australia - We say farewell and pay our respects to Cathy Yip, who died unexpectedly and suddenly in June 2008. For four years, Cathy supported hundreds of people through hepatitis C treatment at Concord Hospital in South West Sydney.

Cathy was a clinical nurse specialist, and worked quietly and calmly with very many people who faced a range of barriers in their lives.

Our thoughts go to Cathy’s son Jonathon, and to her colleagues at Concord. The many people with hepatitis C who were supported through their treatment will remember Cathy as a warm and gentle woman with a bright smile and a strong supportive way of working with others.

• HCCNSW

Resource of the month:

Stem cells hold key to liver cure Australia – Within the next decade, liver stem cells will be used to treat diseases such as hep C, leading researcher George Yeoh predicts.

Professor Yeoh, a cell biologist at the West Australian Institute for Medical Research, has been working on sourcing a stemcell from foetal and adult liver tissue that can be grown to replace diseased liver cells.

Already, his team has found the liver precursor cells in foetal mice tissue and from them has grown robust adult stemcells. Now it is testing whether adult mice with a liver disease would be cured when treated with the grown cells.

If human cells with similar viability and safety could be grown, it might be possible within 10 years to regenerate small areas of diseased liver and within a few years to use the cells to develop better artificial livers and bioreactors for dialysislike blood filtration technology for people with liver failure.

It also had to be determined if regenerated tissue could become infected with the disease of that which it replaced, he said.

“The challenge will be when you put the cells back, will the hepatitis virus infect them?” he said.

• Abridged from The West Australian, 7 May 08.

I Have Hepatitis C: what could happen to me?

This booklet helps you and your doctor predict what your long term hep C outcome might be.

This could help you make lifestyle changes that lessen the risk of long term liver damage, or assist in any decision around treatment.

• To obtain copies, download our resources order form on www.hepatitisc.org.au, or contact the Hep C Helpline on: 9332 1599 (Sydney) or 1800 803 990 (Freecall NSW regional)

12 12

www.hepatitisc.org.au www.hepatitisc.org.au

Where to for hep C treatment in NSW? Following the release of NSW Health’s report into hep C treatment services, Stuart Loveday comments on the current state of play.

T

his edition of The Hep C Review is jam packed with news, views, stories and research findings on hep C treatment.

Personal stories from Floyd and Allan, both of whom have been through treatment, provide powerful voices that can inform other people grappling with their own treatment decisions.

HCV clinical nurse consultant Vince Fragomelli reports that treatment is tolerated and managed better than ever before. Carla Treloar, Max Hopwood and Louise Redsull, qualitative researchers whose work examines the detailed, lived experiences of people with hep C, provide fascinating insight into trends and themes that can help guide both policy and practice and decision making around treatment.

increase the investment needed to help double the numbers of people accessing hep C treatment in NSW by the year 2012?

Will the eight NSW Area Health Services and Justice Health take heed of the warnings contained in the report that unless we double treatment numbers, we will see a much greater call on hospital budgets as more people present with hep C related liver disease such as cirrhosis and liver cancer. This warning is stark.

Social workers Gabrielle Murphy and Karissa Freestone describe the important matter of disclosure that needs to be considered when undergoing hep C treatment. Researchers call on page 46 for people to help provide information that can be used to better support carers of people with hep C who are on treatment.

Clinical researchers look on page 44 for people to take part in treatment studies that may lead to improved health outcomes and higher cure rates.

Adam Cresswell, journalist and Health Editor of The Australian, takes a detailed look at the implications of and barriers to implementing the recommendations of the recently released report of the review of hep C care and treatment services in NSW. And we describe, on page 54, detail of the current gold-standard, governmentsubsidised combination hep C therapy (pegylated interferon and ribavirin). This wealth of knowledge provides a level of transparency of information that can help people with hep C make better and more informed choices.

But the work and decision making that lies behind our State’s health system to be able to provide effective and timely treatment support services is less clear. What does it take to

Certainly, the care and treatment review report, available on our website www.hepatitisc.org. au provides the evidence and the detail that the government needs. It makes far more sense to spend a smaller amount of money now funding permanent nursing and allied health positions that are vital to help support people on hep C treatment in the outpatient setting, rather than spend far more money later dealing with the complications of untreated hep C. Over the coming months we shall be calling on people living with hep C to help us convince their local AHS chief executives – especially those in some rural areas on NSW where precious little hep C treatment support exists – that they need to provide dedicated investment in viral hep outpatient services.

Money is not the only solution. There are many hurdles to jump before treatment numbers are where they need to be, such as people’s perceptions and knowledge of treatment. But the single most important barrier remains the inability of existing liver clinics in our public hospitals to engage more people in treatment.

• Stuart Loveday is executive officer of the Hepatitis C Council of NSW.

The Hep C Review

ED62

September 2008

13

Image via http://images.google.com.au

feature

my story

The bite of the mon S

miles, congratulations and high-fives from my amazing ‘Team C’ support team members.

The six-month post treatment PCR result returned no virus detected. A supporting ultrasound checking elevated gall level and occasional abdominal pain gave the all clear with a healthy “smooth” liver. Hugs and accolades of “well done” burst forth from family and friends. Thirtyplus years of living with hep C was over.

I’d taken the cure and had just gotten through …

Bob Dylan (1975).

The hep C I had been dragging around was genotype 1 and my prescribed course of treatment was the combination treatment for 48 weeks. My team at the clinic emphasised commitment to the program with the goal of eradicating the virus.

How to endure 48 weeks with the forecast ups and downs, side effects, possible side effects etc, was the first issue for me. The supporting psychologist had informed me that I “would not tolerate fools” by month five of the treatment.

A vivid recollection of a period of incarceration many years past gave me the cue.

The task was to develop a strategy enabling me to navigate my way through a 48-week sentence.

My strategy was to focus on the weekly injection as my time marker. A pack of four syringes in the fridge plus two more packs and I was at week 12.

Amazingly the 48 weeks instantly looked and felt smaller. No virus was detectable at week 12. It was smiles and thumbs up from the team to carry on.

Adopting a survivalist attitude, doing what it took to deal with the situation at hand, allowed me to cope with the mild confusion, moments of intolerance and physical tiredness.

When mind and body felt good, I focussed on going surfing; or tackling a task at home, or for a neighbour; or attending a social event.

14

www.hepatitisc.org.au

I had a “get-ready-and-go” attitude. Too much deliberating and fitting in with other people instantly raised the stress level.

I likened what I called the “riba-anxiety” to the survival anxiety one experiences when incarcerated. Living with “the safety catch off” 24-hours-a-day, seven-days-a-week, and yes the psychologist’s words “you won’t tolerate fools by month five” were indeed true.

My partner and I live in an alternative community situated within a national park. I withdrew from the community management team as my tolerance for deliberation and associated politics became nil. For me, issues appeared to be clear cut and I became intolerant of the politics and “fluff”.

My partner worried about me and my relationship with other people in the community.

This concern led to her occasional phone conversation with the clinic’s psychologist. I understood her worry – but could not see the need for her to do so. I felt I was in touch and dealing with things adequately.

My monthly “weigh-in” at the clinic also included a chat with the psychologist; something I placed great value in as it allowed the team and me to be intimately aware of how I was travelling. A moment of checks and balances on my hours of reflection and meditation that I embraced throughout the treatment. I did not work a regular job as such throughout the 48 weeks.

Self-soothing came by way of playing music from early morning through to the evening. The music was moderately loud, especially when I had the need to don the gloves and flail the punching bag for 15 minutes or so.

my story

nkey – Floyd’s story

I no longer experience the energy and motivation loss which would flatten me for several days at a time. Pursuing creative interests that I had previously neglected over the years is now a big personal focus.

My physical body still demanded some maintenance for my well-being. Part of my comfort wrap was my spirituality. Music and prayer and the lighting of a prayer candle given to me by a friend became a significant ritual throughout my treatment.

During treatment I travelled to Bali with family for our son’s wedding. Surfing together he caught waves as I just paddled around. I was wasted just getting across the reef and that was before paddling out through the line-up. While in Bali I was bitten on the arm by a monkey. The irony of it didn’t escape me – on treatment dealing with the ramifications from the “bite of the monkey” thirty years previously!

The Hep Connect and other support activities especially in my local area are something I am looking to engage with in the coming months. I am hoping to be part of encouraging others as they seek to take the cure.

Floyd, NSW. NB: For information about the Hep C Council’s Hep Connect service, see page 46.

The Hep C Review

ED62

September 2008

15

Image via http://images.google.com.au

With treatment over and no virus detected, my reclaimed daily energy and endurance allow me to perform all day, following up one task after another, hallelujah!

feature

Action needed for hep C tr

The number of hep C patients receiving treatment needs to double within five years just to stop the exis and liver cancer from turning into a flood. Adam Creswell reports on the NSW Hepatitis C Care and Trea

H

ep C is a viral disease which attacks the liver and is commonly transmitted via sharing needles. It ranks as the most commonly notified infectious disease in Australia over the past 10 years. In 2005 it was estimated that over 260,000 people in Australia had been exposed to hep C. A long-awaited review of treatment services commissioned by NSW Health has concluded that if the number of people receiving treatment remains at its 2005 level of 2,000, the number of people living with chronic HCV and more advanced-stage liver disease or cirrhosis is projected to “increase by around 38% by 2015”.

The report says the number of people treated each year would need to reach 6,000 to prevent the expected increase in people with advanced liver disease.

Although treatment rates have risen since 2005 (it is now estimated that 3,500 people a year are being treated for HCV infection in Australia), the number still has to rise substantially to ensure hospitals are not overwhelmed by people needing treatment for liver failure that could have been prevented.

Image by Jiva, via www.flickr.com

Stuart Loveday, Executive Officer of the Hepatitis C Council of NSW, says the most pressing need is to recruit more nurses and psychologists to help people get through the arduous year-long treatment.

16 16

www.hepatitisc.org.au www.hepatitisc.org.au

“The side effects can be exceptionally debilitating and cause massive mood swings,” Loveday said.

“Hep C itself causes depression, but the treatment can worsen that, and suicides have occurred on a number of occasions on hep C treatment. Really, it’s the nurses who are in demand.”

Greg Dore, head of the hepatitis program at the National Centre in HIV Epidemiology and Clinical Research, says although commissioned in NSW, where 40% of the country’s new hep C cases are reported, the report’s findings apply to every other state except Queensland.

Capacity in the system has not increased and “clinics are full at the moment,” he says.

“Apart from Queensland, where they have injected money into (recruiting more) clinical nurse consultants.”

As well as recruiting more nurses and psychologists, other doctors such as sexual health physicians and doctors working in methadone clinics could also be used to deliver hep C treatments, he said.

Acting Chief Medical Officer of NSW Health Kerry Chant says the department is “looking at how best to respond and implement the recommendations in the report.”

feature

reatment

sting flow of cases of liver cirrhosis atment Review.

Work has also begun on developing revised guidelines for hep C treatment, in line with the recommendations, including the funding of pilot sites to trial provision of hep C treatment through alcohol and other drug services. Doctors with prescribing rights for hep C treatment will also get free supplies of hep B vaccine, a three-dose vaccine that normally requires one or more doses to be bought on private prescription, “to improve broader health outcomes for people with hep C”.

The 120-page report found most HCV treatment services reported having no spare capacity to increase numbers of patients receiving treatment, and most funding came from multiple sources and was nonrecurrent – a point that hinders recruitment efforts, because candidates are deterred by the reduced job security.

The report also found treatment services were scarcer in rural areas. Also a number of groups including prisoners, children and Aboriginal people found it harder to access treatment.

Helen Tyrrell, CEO of Hepatitis Australia, says the report is “to my knowledge, the first really comprehensive review of the treatment and care services in any of the states” for at least five years.

As NSW accounts for nearly half of all HCV cases, “if NSW can make some inroads here, it’s going to have some impact on the national figures”.

“Unless we get numbers of new transmissions per year below the number who are treated and cured every year, we are not really winning,” Tyrrell said.

Image via http://images.google.com.au

Chant says NSW Health has already agreed to boost health service budgets by an extra $800,000 in recurrent funding to support hep C patients. An extra $250,000 in recurrent funding has also been given to the Hepatitis C Council of NSW for health promotion initiatives, and $290,000 to the Australasian Society for HIV Medicine to train GPs to prescribe hep C drugs.

Greg Bell, 1951-2008

W

ith the renaissance of the Australian film industry in the 1970s, cameramen such as Russell Boyd showed the world what Australia looked like. Greg Bell showed how it sounded.

Sound editors, responsible for all the sounds, except music that make up a film’s soundtrack, are often the least noticed of the creative team.

Bell was the sound editor on many of Australia’s foremost films. The director Phillip Noyce said Bell was the first to raise Australian sound editing to the level of an art form.

Greg Bell, who died of liver cancer at 56, had credits on more than 300 film and television productions in a career that began in 1968 with Skippy – The Bush Kangaroo. His films included Sunday Too Far Away (1975), Picnic At Hanging Rock (1975), My Brilliant Career (1980), Gallipoli (1981), Heatwave (1982), Emerald City (1988), Crush (1992) and Heavenly Creatures (1994).

Greg is survived by his partner of 13 years, two children and two grandchildren.

• Abridged from the SMH, 14 July 2008.

• Adam Cresswell is health editor with the Australian newspaper. This article abridged from ‘Call for action now to cut hep C burden’, The Weekend Australian, 28/6/2008.

We don’t know if Greg Bell’s liver cancer was caused by hep C, but his untimely death reminds us of the importance of improved clinical and transplant services for people with end-stage liver disease. ED

The Hep C Review

ED62

September 2008

17

feature

Antiviral therapy:

Vince Fragomelli provides an update on current treatment of hep C, encouraging people with hep C to c

I

nterferon treatment for hep C has been available in Australia since the early 1990s.

Since then, significant advances have been made in treatment tolerability and response rates. However, in Australia, the uptake of hep C treatment remains low.

Around 200,000 people in Australia may be eligible to receive antiviral treatment but current treatment numbers are around 3,000 per year.

If treatment numbers remain at the current low level, the number of people living with advanced liver disease may triple in the decades to come.

Standard interferon monotherapy was the first form of treatment for hep C and was available in the early 1990s. Side effects were often a problem and the cure rate was less than 20%. In the mid 1990s, ribavirin was introduced, taken with standard interferon. Treatment became known as combination therapy and the response rate more than doubled to approximately 45%.

The previous standard interferon gave peaks and declines in interferon levels within the blood.

These are thought to explain the often dramatic and intense side effects associated with standard interferon. It has also been demonstrated that hep C viral load could increase when interferon blood levels are lower on the non-injecting days associated with standard interferon. This phenomenon could also explain standard interferon’s lower cure rate.

“We must as why current treatment numbers rema low, and why overwheming negative perceptions about side effects still exist.”

From 2000 onwards, pegylated interferon – a once per week longer acting interferon – was introduced. In 2004, the combination of pegylated interferon and ribavirin was listed on the Pharmaceuticals Benefits Scheme (PBS) and this is the current gold standard of treatment for chronic hep C in Australia and throughout the world.

Today’s combination of pegylated interferon and ribavirin is a superior treatment for chronic hep C, not only in terms of response rates but also tolerability. We must ask why current treatment numbers remain low, and why overwhemingly negative perceptions about side effects still exist.

The overall cure rate with pegylated interferon and ribavirin is approximately 60%. Therefore, the response rate has trebled in the last decade.

And, most importantly, the tolerability of treatment has also been dramatically improved.

While I understand that there are a range of reasons why people do not choose to have hep C treatment, I believe that the main reason is associated with the fear of perceived treatment side effects.

The improved response rate and tolerability of pegylated interferon is directly related to the pharmacodynamics of this medication. Pegylated interferon is slowly released into the bloodstream over a one-week period. Consequently, interferon levels are maintained at a more constant and therapeutic level. The antiviral effect of pegylated interferon is more enhanced, sustained and prolonged.

I feel that this fear stems from the history of standard interferon and its often intense side effects. However, as previously stated, today’s pegylated interferon combination treatment enjoys greatly improved response rates and tolerability.

18

www.hepatitisc.org.au

Doubters will probably ask, “has the tolerability of pegylated interferon been evaluated?”

Thankfully the answer is “Yes!”

feature

facts and myths

consider their antiviral treatment options.

sk t

ain y gly

s

In a paper titled Peginterferon alfa 2a improves HR-QoL outcomes compared with unmodified interferon alfa 2a in patients with chronic hepatitis C, the tolerability of pegylated interferon as opposed to standard interferon has been evaluated.* To summarise, 531 patients were enrolled in this study, the majority of whom had a high viral load and 13% had cirrhosis. Scientifically tested and proven QoL (quality of life) assessment tools namely FSS (Fatigue Severity Scale) and SF36 (Short Form Health Survey) were completed by patients periodically during treatment and at 24 weeks post treatment. The results showed that people receiving pegylated interferon reported lower scores for both the FSS and SF36, reflecting fewer physical, psychological and emotional side effects whilst on treatment. These results are further heightened by the fact that people receiving standard interferon were receiving six million units three times per week as opposed to the conventional practice in Australia of three million units per week.

Interestingly, differences in FSS and SF36 scores in the standard interferon and pegylated interferon groups were less prominent at week 12, suggesting that people receiving either form of interferon had adjusted to the treatment. I notice this in my own clinical practice.

physical, psychological and emotional benefits of pegylated interferon as opposed to standard interferon.

In conclusion, the main objective of this article was to create an increased awareness of what I am seeing in my clinical practice every day.

Sure, treatment may not be a party, but pegylated interferon and ribavirin can be an effective and tolerable treatment for chronic hep C. Clinical research has clearly demonstrated that current treatment has less impact on a person’s quality of life. It really is a question of “a little bit of short term pain for a lot of long term gain.” The benefits to your liver health and general wellbeing far outweigh the potential and temporary side effects of this treatment.

In particular, antiviral therapy may reduce the chance of you developing severe liver disease and this in itself should be sufficient motivation to consider treatment.

As a Clinical Nurse Consultant, I believe that the key to successfully completing combination treatment is in the management of potential side effects and this is the primary role of the nurses and doctors.

I urge you all to move past old fears and misinformation about hep C treatment. Pegylated combination treatment is clearly a better and more tolerable drug. There are also some exciting new emerging therapies that may be available through clinical trials and the future looks bright for even greater efficacy and tolerability of hep C treatments. So please, I urge you to visit your doctor or nurse to discuss your hep C treatment options.

Overall, people in the trial who received pegylated interferon were less likely to report moderate to severe pain or pain that interfered with their work. They had higher energy levels and were more emotionally stable. Furthermore, people who were cured (sustained virological response), regardless of which interferon they received, had significantly lower scores for FSS and SF36. The latter further enhances the potential long term benefits of seeking treatment and achieving a sustained virological response.

• Vince Fragomeli is a hep C Clinical Nurse Consultant at Nepean Hospital, NSW.

Overall, this clinical research study demonstrates that pegylated interferon is associated with fewer and less disabling side effects and reinforces the

* Peginterferon alfa 2a improves HR-QoL outcomes compared with unmodified interferon alfa 2a in patients with chronic hepatitis C. Rasenack J, et. al.

PharmacoEconomics. 2003; 21 (5) 341-349.

The Hep C Review

ED62

September 2008

19

feature

Social determinants of

This article by Richard Wilkinson and Michael Marmot introduces Social determinants of health: the sol

E

ven in affluent countries, people who are less well off have shorter life expectancies and more illnesses than the rich. Not only are these differences in health an important social injustice, they have also drawn attention to some of the most powerful determinants of health standards in modern societies. In particular, they have led to a growing understanding of the sensitivity of health to the social environment and to what have become known as the “social determinants of health”.

• • • • • • •

Social Determinants of Health: the Solid Facts is a booklet that outlines the most important parts of this new knowledge. The ten topics covered are: • the social gradient • stress • early childhood

Health policy was once thought to be about little more than the provision and funding of medical care; the social determinants of health were discussed only among academics.

social exclusion working conditions unemployment social support drug dependence food transport

Each chapter contains a brief summary followed by a list of implications for public policy.

As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we need to feel valued and

Stress Stressful circumstances, making people feel worried, anxious and unable to cope, are damaging to health and may lead to premature death.

What is known Social and psychological circumstances can cause long-term stress. Continuing anxiety, insecurity, low self-esteem, social isolation and lack of control over work and home life, have powerful effects on health. Such psychosocial risks accumulate during life and increase the chances of poor mental health and premature death. Long periods of anxiety and insecurity and the lack of supportive friendships are damaging in whatever area of life they arise. The lower people are in the social hierarchy of industrialised countries, the more common these problems become.

20

www.hepatitisc.org.au

Why do these psychosocial factors affect physical health? In emergencies, our hormones and nervous system prepare us to deal with an immediate physical threat by triggering the fight or flight response: raising the heart rate, mobilising stored energy, diverting blood to muscles and increasing alertness. Although the stresses of modern urban life rarely demand strenuous or even moderate physical activity, turning on the stress response diverts energy and resources away from many physiological processes important to long-term health maintenance. Both the cardiovascular and immune systems are affected. For brief periods, this does not matter; but if people feel tense too often or the tension goes on for too long, they become more vulnerable to a wide range of conditions including infections, diabetes, high blood pressure, heart attack, stroke, depression and aggression.

feature

f health

lid facts, a discussion paper from the World Health Organisation. appreciated. We need more social interaction within society. We need friends, the feeling of being useful, and we need to exercise a significant degree of control over meaningful work. Without these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.

By tackling some of the material and social injustices, social policy will not only improve health and wellbeing, but may also reduce a range of other social problems that are associated with ill health and are rooted in some of the same socioeconomic processes.

In ED61, we began our coverage of Social Determinants of Health. Over the following editions of The Hep C Review, we will feature the remaining topics that underpin this social viewpoint. ED

Although a medical response to the biological changes that come with stress may be to try to control them with drugs, attention should be focused upstream, on reducing the major causes of chronic stress. • In schools, workplaces and other institutions, the quality of the social environment and material security are often as important to health as the physical environment. Institutions that can give people a sense of belonging, participating and being valued are likely to be healthier places than those where people feel excluded, disregarded and used. • Governments should recognise that welfare programs need to address both psychosocial and material needs; both are sources of anxiety and insecurity. In particular, governments should support families with young children, encourage community activity, combat social isolation, reduce material and financial insecurity, and promote coping skills in education and rehabilitation.

The The Hep Hep C C Review Review

ED62 ED62

September September 2008 2008

21 21

Image by Rubybgold, via www.flickr.com

Policy implications

feature Early childhood A good start in life means supporting mothers and young children: the health impact of early development and education lasts a lifetime.

Observational research and intervention studies show that the foundations of adult health are laid in early childhood and before birth. Slow growth and poor emotional support raise the lifetime risk of poor physical health and reduce physical, cognitive and emotional functioning in adulthood. Poor early experience and slow growth become embedded in biology during the processes of development, and form the basis of the individual’s biological and human capital, which affects health throughout life.

Poor circumstances during pregnancy can lead to less than optimal fetal development via a progression that may include deficiencies in nutrition during pregnancy, maternal stress, a greater likelihood of maternal smoking and misuse of drugs and alcohol, insufficient exercise and inadequate prenatal care. Poor fetal development is a risk for health in later life.

Infant experience is important to later health because of the continued malleability of biological systems. As cognitive, emotional and sensory inputs program the brain’s responses, insecure emotional attachment and poor stimulation can lead to reduced readiness for school, low educational attainment, problem behaviour, and the risk of social marginalisation in adulthood. Good health-related habits, such as eating sensibly, exercising and not smoking, are associated with parental and peer group examples, and with good education. Slow or retarded physical growth in infancy is associated with reduced cardiovascular, respiratory, pancreatic and kidney development and function, which increase the risk of illness in adulthood.

Policy implications These risks to the developing child are significantly greater among those in poor socioeconomic circumstances, and they can best be reduced through improved preventive health care before the first pregnancy and for mothers and babies in pre- and postnatal, infant welfare 22

www.hepatitisc.org.au

Image by Carf, via www.flickr.com

What is known

and school clinics, and through improvements in the educational levels of parents and children.

Such health and education programs have direct benefits. They increase parent’s awareness of their children’s needs and their receptivity to information about health and development, and they increase parental confidence in their own effectiveness.

Policies for improving health in early life should aim to: 1. increase the general level of education and provide equal opportunity of access to education, to improve the long term health of mothers and babies; 2. provide good nutrition, health education, and health and preventive care facilities, and adequate social and economic resources, before first pregnancies, during pregnancy, and in infancy, in order to improve growth and development before birth and throughout infancy, and reduce the risk of disease and malnutrition in infancy; and 3. ensure that parent–child relations are supported from birth, ideally through home visits and the encouragement of good parental relations with schools, to increase parental knowledge of children’s emotional and cognitive needs, to stimulate cognitive development and pro-social behaviour in the child, and to prevent child abuse.

• Abridged from Social Determinants of Health: The Solid Facts (second edition) World Health Organisation 2003.

my story

Far from Superman – Allan’s story

M

I will admit I am far from superman. Being genotype 1, I just have to toughen up to fight on another day.

y name is Allan and I am on combination treatment for my hep C genotype 1.

I am 43 weeks into 48 weeks of treatment. I was able to stay on treatment after week 12 even though my viral load was down by only 7%.

Nevertheless, today at week 43, I feel healthier, and in fact, my protein levels are back to normal.

I really want to thank the nurses, doctors, Hep C Helpline, HALC solicitors and last, but far from least, The Hep C Review. I do wish the best for anyone going on treatment.

“Concrete” Allan (the nurses’ nickname for me)

At week 12, I was informed that I was a nonresponder and left the nurse’s office very upset. At church that weekend I cried my heart out.

With the help of songs and church, I have built up again the strength of mind to hopefully beat this disease one day in the future. I refuse to give up. After all, it is the only life I have.

I have found treatment with few side effects. This doesn’t mean I haven’t had back-breaking days, but I knuckle down for the benefit of my health, even though I will continue to be chronically affected with hep C. It does me good to speak words of help to others on treatment. I have found that it is not what others can give to you in life, but what you can give to others that matters.

I have been getting lots of assistance from the Hep C Helpline. I really don’t know what I would have done without their help. To put it simply, they are great.

I also get free assistance from a HALC solicitor in accessing my superannuation to look after my health.

I do need this help because in my state of mind (health problems, prison, family, etc.) it would have been too much to handle.

The Hep C Review

ED62

September 2008

23

Image by Phil Romans, via www.flickr.com

I now look to the future. Would it be beneficial to go on an interferon low dose maintenance program? Should I try complementary medicines? Should I look after my health with vitamins and minerals? I’ve heard that staying as healthy as possible can help avoid damage to my liver.

feature

Disclosure and hep

One of the biggest difficulties identified by people considering hep C treatment is telling others about their hep C status, write Gabrielle Murphy and Karissa Freestone.

W

hile many people are confident that they have disclosure of their hep C status worked out by the time they consider treatment, the prospect of treatment and its many physical and psychological demands can raise many new questions.

While the client’s concerns have validity, from a clinician’s viewpoint, non-disclosure can raise many issues that may affect that client’s ability to manage the affect of combination therapy.

Questions that we often ask the clients to consider include:

In our work in the hep C treatment clinic at the John Hunter Hospital, it is apparent that disclosure is an issue which affects people across all or some aspects of their life, including the family unit, social supports, work place and financial situation. We see that this can ultimately impact upon our client’s ability to manage treatment programs and is likely to affect their ability to complete the required 24 or 48 week therapy course.

There are four types of disclosure (as described

by Hopwood, et. al.) that our clients tend to use:

• Can you manage and explain the side effects of treatment to your family and friends if you choose not to disclose?

• non disclosure: not telling anyone in any of their social spheres of their hep C status; • strategic disclosure: telling only certain people across certain spectrums of their life, e.g. their mother but not their father, their family but not their work colleagues, their work colleagues but not their manager; • substitute disclosure: telling people that they are unwell or have a liver condition but do not give specific information that the condition is hep C; and • open disclosure: where clients openly tell everyone of their hep C status.

In our experience, one of the primary reasons clients choose not to disclose their hep C is fear of the impact that such disclosure would have.

Issues such as loss, change in the nature of a relationship and stigma are all real concerns.

Fear of a bad reaction and rejection by loved ones, maybe losing their job or friends, or fear that people will think of them differently because they have hep C are all reasons why clients may choose not to disclose their hep C status.

These same worries are relevant for many people when it comes to considering disclosing about treatment.

24

www.hepatitisc.org.au

• Can you hide the medication from family and friends when it needs to be kept in the fridge?

• How do you ensure that hep C transmission will not occur with family or flat mates if you don’t want to inform them of your hep C status and treatment?

• Can you keep your job without some form of disclosure? What if your boss assumes you have lost interest in your job and are taking time off for other reasons?

• What (if anything) do you need to tell your children? At what age should they know?

When considering treatment, we recommend that you think seriously about your options for disclosure – who, what and when – including possible consequences of each option. Once you’ve thought it all through, approach the situation carefully and be armed with the right information. It also helps if you practise your words out loud with someone you know, so it sounds natural and you feel well prepared.

The best way to approach this issue and help with your planning is to think through who your main support people are, what they are likely to say, the value of their support and relative risks and benefits of them knowing about hep C and treatment. If you decide that it is important that they know, then great! Go for it! But if you decide that the whole truth is not in your best interests, remember that “being creative with the truth” can lead to extra stress and is hard to maintain. The following section is a series of suggestions about how you may approach these common situations and questions.

feature

Image by Unhindered by Talent, via www.flickr.com

C treatment

How can I explain side effects without full disclosure?

How can I manage the medication and avoid accidental tampering?

Sometimes being vague may be a useful compromise. Having a “liver condition” or “crook liver” can be an option, then you can be vague and forgetful about what your condition is called.

This is hard, because the injections need to be kept in the fridge. A strong, airtight plastic container with a firm, frosted lid, labelled clearly so it’s not mistaken for food, kept in the veggie bin or butter cooler helps prevent accidental opening by kids and visitors. You can also try using a lockable medicine chest or even petty cash box which may make the curious give up.

If you do choose this option, make sure you focus on what you want out of the situation. “I can’t remember what it’s called, but the doc said that the side effects could be… and what I need from you is…”

Middle-aged women have told us that they refer to their hep C as “early menopause” – other women are sympathetic and men run a mile from asking more details.

In shared households (especially flatmates), having your razors, toothbrushes, etc separate from the rest of the house is essential, so extending that to “my stuff” in the fridge may be easy. If that doesn’t suit you, consider buying a bar fridge to keep in your room.

The Hep C Review

ED62

September 2008

25

feature How can I express my support needs to my family without full disclosure?

For most people, the goal of disclosure is to get support. Using that principle, disclosing about your “crook liver” is not the focus – describing in specific detail what you may need help with should be the focus of conversation. Be specific; help with childcare, financial flexibility or mood swings, etc. If you just can’t face the prospect of telling someone about a history of injecting drug use, maybe you can trust them enough to say “Please don’t ask how, just know I need your support.”

Focus your discussion on how they can help you and how much you will appreciate their support.

You may even decide to negotiate specific duties around the house – share the cooking, cleaning or the outside duties more evenly. This way, others know what they need to do and can focus on this, rather than on your health issues.

What can I tell my boss about my ability to work without full disclosure?

Again, focusing on what you need or want is the goal in any discussions with your employer. But before talking to your employer in any detail, get your information right. Check with your pay office or administration staff to see how much sick leave, annual leave or long service leave you have and when you will be due for more.

Think through what the possible advantages and disadvantages of disclosure may be. Will your boss automatically jump to the wrong conclusion about your work commitment if you use sick leave? Would disclosing to your boss end up with a breach of your confidentiality? Or could your boss prove to be a great support and help make your treatment experience easier? If you have answered these questions for yourself and decide you want their support, go to your boss with specific ideas: • You may need to consider reduced hours due to health reasons, such as working short days one day per week, no overtime, light duties or flexible sick leave arrangements.

• Stress that you may not need such changes now, but you want to keep your boss informed in case you do. Highlight that if you do become unwell, it will be for a set time only – the treatment starts and ends on a specific date and within a few weeks of finishing, you hope to return to full duties.

26

www.hepatitisc.org.au

• If your boss asks, try to stress the confidential nature of your illness – “I have a crook liver and I need medication but I want to keep this confidential between us.”

• Remember that you do not have to disclose your illness to anyone, no matter what argument they use. If you feel you are being pressured to disclose, say so! “I feel you are putting unfair pressure on me to disclose something confidential. I am discussing this with you out of courtesy, not any legal requirement.”

A word of caution, however. Some bosses get worried about Occupational Health and Safety (OH&S) issues, especially if they fear that your medication may affect your ability to do your job safely. If you are operating machinery or driving a lot, would a loss of concentration and fatigue put you or others at risk? While your treatment centre may be able to provide you with a letter outlining the side effects and management strategies, there are cases of this backfiring on the worker. So, if your boss asks for something in writing and you feel comfortable with that, ask your treatment centre if they can provide you with a brief letter, containing start and stop dates, potential side effects and the best ways to manage these. Get the letter sent to you first so you can read it, decide if it’s right for your needs and then you can decide who (if anyone) you want to give it to – keep the information in your hands!

Remember that the purpose of this strategic disclosure to a colleague or boss is to identify them as an “ally” in your contact and negotiations with management. If in doubt about how this will work, you may decide to wait and see how the treatment is affecting you before making major decisions.

What can I tell my kids?

This is really hard, because for many people this involves admitting to past life choices of which you may not be proud. The main things to consider are the individual traits of the child.

Do they have the emotional maturity to deal with this information? Do they understand about information “just for the family” without compromising your principles of truthfulness?

Would they be tempted to tell their best friend/s, teacher and canteen lady? Is telling them this going to cause them undue stress or worry?

feature Whatever you opt to tell them, make sure you, your partner and anyone else who knows (grandparents, etc.) all have the same story. It’s no good you telling them the treatment is for your liver, your partner telling them it’s for diabetes and grandma saying it’s cancer!

Disclosure to children is based on your knowledge of the individual child, their maturity, ability to treat the information confidentially and your willingness to disclose how you acquired hep C. Many people use this as an opportunity to warn about the dangers of drug use for their kids.

As a general guide, high school children are probably at an age when partial or complete disclosure is most appropriate. For younger children, your decision should be based on the individual child. One general comment though – most clinic staff would be pretty uncomfortable with patients giving themselves their interferon injection in front of young kids. It may be important that they know what you need to do, but giving yourself some peace and quiet (in your room or somewhere else) with the door closed may give you a few precious minutes to gather your thoughts and will reduce the chances of injecting incorrectly.

Conclusion The prospect of hep C treatment is often daunting, but if you plan, prepare and negotiate the important things with those around you, then the support you receive from family, friends and colleagues may make the treatment easier for everyone.

But please remember that you are under no obligation to tell anyone about your hep C status – any choice you make about disclosing hep C or your treatment is about getting the best support you can to help you cope!

If you want more information on disclosing, check out the booklets, My Rights and My Choice to Tell, and the Hepatitis C Council factsheets available from www.hepatitisc.org.au

• Gabrielle Murphy and Karissa Freestone are Viral Hepatitis Social Workers at John Hunter Hospital, Newcastle.

Hopwood, M, Treloar C, Redsull L. Experiences of hepatitis C treatment and its management. NCHSR monograph 4/2006.

The Hep C Review

ED62

September 2008

27

Image by Enggul, via www.flickr.com

Also see The 3-D Project – diagnosis, disclosure, discrimination and living with hepatitis C (http:// nchsr.arts.unsw.edu.au/pdfreports/3Dproject.pdf)

feature

Sala Baluard: Spanish harm reduction Barcelona embraces harm reduction in providing supervised consumption rooms for drug users. DDN talked to a physician working in the largest, the Sala Baluard.

L

ike many port cities, Barcelona has a long history of drug culture and drug use. A few years ago, concerned by the social and public health implications of widespread injecting drug use, the city authorities took the decision to open the first of Barcelona’s injection facilities, or ‘consumption rooms’. Here service users could not only go to inject safely, away from the dangers of the street, but gain access to vital health and social care services as well.

Opening in November 2003, Sala Baluard was the first, and is still the largest, of the city’s five consumption rooms. Unlike the others, which open for between eight and ten hours at a time, it is open 24 hours a day, seven days a week. A nurse and an auxiliary are available at all times, and doctors work at the facility in shifts that add up to around 20 hours cover each week.

Manel Anoro is a general physician in Barcelona’s primary healthcare services with a long-standing interest in drug treatment, and he works at Sala Baluard one morning a week.

Dr Anoro was part of a team that had been visiting a high drug use district since the late 1990s, offering a needle exchange service and providing food. The team began providing a special injection room in a large tent, and then in a van – “a very simple place,” as he describes it.

Consumption rooms in Spain operate on two different models. In Barcelona and Bilbao, the facilities are inside the city itself. In Madrid, it’s a different kind of solution: a large injection room outside the city – like a drug Disneyworld.

Sala Baluard is in Barcelona’s old city, just minutes from prime tourist areas. What was the reaction to the facility being sited there?

“Barcelona has a long tradition of people who consume drugs, so it didn’t really seem strange,” Dr Anoro says.

28

www.hepatitisc.org.au

Image via http://images.google.com.au

“Some people said they didn’t want the facility near their homes. You have to explain to the community what you are doing ... after a while it becomes clear that these facilities are not a problem.”

Is it possible to quantify the effect the facility has had on public health in the city?

“It’s very difficult to know the exact impact,” he says. “There are around 180-200 injections taking place each day in the facility. If we didn’t have Sala Baluard, then most of those injections would take place in the street. We have around 100 overdoses a year in the facility. If they were happening outside it’s possible that a percentage would die. It’s difficult to measure exactly.”

The facility provides a first point of contact where the health of the users can be assessed and from where they can be referred to other services, medical or social. If the nurse notices someone with a problem she will refer him to one of the doctors, who offers antibiotic treatments and basic primary healthcare as well as methadone programmes. If the service users are found to have serious medical conditions, however, they are referred to the relevant facilities.

“We don’t have specialists here,” Dr Anoro says.

“If they have problems such as hep C, we will send them on to the normal health services.”

Are there plans to open more consumption rooms in the city?

“I’d like to see more opened, but that depends on the council and if the local communities can be persuaded. Hopefully they will,” Dr Anoro said.

• Abridged from Drink & Drugs News, 2 June 2008.

my story

It was too late – Gary’s story

I

was 18 when I first came to jail and before that had no tattoos, nor had I ever injected any drugs. Little did I know that these two things would have such a big impact on my life and on my family. But boy did it!

At age 24 I went to Odyssey House and as I was withdrawing, I became very sick. I thought it was just from the gear. When we went to the doctor we got the usual tests for HIV, etc. and when they returned I found out I was sick from hep B.

I still don’t know which of these two did it, but lo and behold I ended up with hep C.

It was horrible. I had yellow eyes and skin and no one wanted to be near me. Eventually I got better and thought that was the end of it. This was in the late 80s before we knew much about hep C.

I never worried about sharing needles until the HIV/AIDS epidemic hit, and when those Grim Reaper ads appeared, I really took notice. I started cleaning my fits 2x2 with bleach but it seemed I was too late.

Then, when I was in my late thirties, I started feeling lethargic with pains in my right side and I just generally felt like crap. So I went to see the doctor again. He did some tests and told me I had hep C and would have to start changing my lifestyle. So, here I am at 43 finding myself trying to teach young blokes the errors of my ways.

I will be getting on the interferon when I am released and can only hope that it works. I wrote this in the hope that somebody gets something out of it. The Hep C Review is the only way I have of getting information on my disease and how to make living with it easier. I thank them for their interest and their care.

I would also like to tell people coming into the prison system wanting to get tats, or use intravenous drugs, that it is not that hard to get hold of bleach. Keep your needles clean. Sure, it might take a couple of extra minutes, but it’s better than a few years off your life or the pain and suffering that you and your family will surely go through.

Image by MatthewM, via www.flickr.com

I don’t wish to preach, but I wish someone had told me to use bleach, as I would not be in this predicament now. With all the information you can find around in jails these days you’d be a fool not to take notice. I only wish I had known about all this when I first ended up here in the 80s.

To be forewarned is to be prepared and if I can get this message through to some of you young blokes out there, then we’re all better for it.

Gary, NSW

The Hep C Review

ED62

September 2008

29

30

www.hepatitisc.org.au

The Hep C Review

ED62

September 2008

31

opinion

End our jailhouse Thousands of prisoners suffering from drug and mental health problems need help behind bars, not official bungling, writes Gino Vumbaca.

I

n the past 20 years, Australia has almost doubled the rate at which we put people in prison. As we go about our daily business there are more than 25,000 fellow citizens living in a prison. They are locked away each night behind the high walls and razor wire in cities and towns around the country, out of sight and increasingly out of our thoughts for the future.

Most of these prisoners can be categorised as having committed their offence/s while intoxicated with alcohol or some other drug, being drug or alcohol-dependent or suffering from severe mental health problems, if not all three at once. Some would also have been physically and sexually abused as children.

Aboriginal people make up more than 22% of the prison population. More than half of Aboriginal prisoners will have been in prison before, with some returning for many more visits, and their rate of hep C will far exceed the rate in the community.

In prison people can be expected to regularly see, if not experience, acts of violence, sexual assault and intimidation, be moved from prison to prison at a moment’s notice and locked in their cells for hours or days at a time. Not quite the holiday camp some may have you believe.

Nonetheless, prisons have a role to play as they provide deterrence against crime and a secure environment to keep the community safe from murderers, sex offenders and other violent offenders. However, for the mentally ill, sexually abused and drug dependent, there are much better options, such as getting people with problems into treatment much earlier, whether this be in residential centres that provide 24-hour services, or by providing other forms of treatment.

In its recent review of Australian prisons and drug policies and programs, the Australian National Council on Drugs found that many prisons failed to provide even the most basic range of treatments for most of their prisoners.

32

www.hepatitisc.org.au

This was particularly so for methadone, which is the most widely available and effective treatment option in the community. This is the price you can pay if heroin-dependent and in prison: the removal of the most effective and efficient treatment we have. One of the results of this policy is groups of prisoners regularly sharing used and often blunt injecting equipment, as needle exchange fails to even gain a trial foothold in any prison.

The indisputable evidence for investment in these programs seems to be overrun by a belief that the limited money available for drug and alcohol services in prisons is better spent urinetesting hundreds of prisoners each day to see who is using drugs, and then punishing them if they have used a drug. Given what we already know about the high levels of drug use by people before they enter prison and the continuation of drug use in prison, I wonder how we would react to governments spending millions of dollars each year on the aged, to prove they were aged rather than help them with care and support services.

So what can we do? The first thing is to acknowledge that for the tens of thousands of people going through the prison system each year, it is in our best interests to have them leave prison with a reduced likelihood of re-offending and a real chance to live with respect and dignity.

We need to increase the availability of drug rehabilitation and treatment in prisons and the wider community so that people can access these services and not be put on endless waiting lists.

Thankfully some things are changing. The Council of Australian Governments Illicit Drug Diversion Initiative is a genuine attempt to provide alternatives for the drug dependent and may have contributed to the very recent stabilisation in Australia’s prison population. We hope it is a program the Federal Government will commit to in the long term, and that the recent COAG initiative on mental health will lead to better access in the community for people with mental illnesses.

opinion

blues

job in difficult environments, for us to expect that prison officers predominantly trained in security are best placed to manage some of most serious cases of substance use, mental illness and disability is not in anyone’s best interest.

Another idea gaining currency in professional circles is the development of health-based alternatives to prison for mentally ill people and those with alcohol problems.

The alternative is to continue the current practice of often releasing into the community people more damaged and more violent as a result of their prison experiences.

We also need to rethink our prisons in order for real changes to occur. Prisoners are probably some of our most damaged citizens. To start with, we have to look at how we staff and manage prisons. While prison staff often do a tremendous

Prisons cost a lot of money to run — close to $60,000 a prisoner each year. It is unacceptable for public funds to be poured into a system in which violence and intimidation are the norm and the outcomes on re-offending are so poor.

We could expect a much better return on our investment if it was spent more wisely.

Gino Vumbaca is Executive Director of the Australian National Council on Drugs.

• Abridged from The Age, April 28, 2008 via www.dailydose.net

The Hep C Review

ED62

September 2008

33

Image by Stigeredoo, via www.flickr.com

Of course, the issue here will be ensuring that it goes to those that most need it, as already highlighted by the Mental Health Council of Australia.

feature

A good night’s sle

How are your fatigue levels? Sleep is essential for good health and combatting fatigue says Delwyn Bar

A

recently published report following 3,300 participants found that 18.4% slept for less than 6.5 hours. Having less than 6.5 hours and more than 8.5 hours of sleep is associated with type 2 diabetes, increased cardiovascular disease and reduced immune function.

The paradox of good sleep is to give yourself the opportunity to sleep, that is, sufficient time (7– 8.5 hours) in bed without feeling pressured to sleep which can lead to sleep stress and anxiety.

Other individuals spend sufficient time in bed but suffer from a sleep disorder. It is important to discuss any sleeping difficulties with your GP. The most common sleep disorder is insomnia (a repeated difficulty with going to sleep, staying asleep or waking too early). Half the population will experience some form of insomnia at some stage in their lives.

More severe forms of insomnia are associated with increased frequency, reduced daytime function and an overwhelming sense of insufficient sleep for the individual’s need.

Image by Jahdakine, via www.flickr.com

Insomnia is often a symptom of some other underlying problem such as relationship issues, work or financial stresses (primary insomnia);

34 34

www.hepatitisc.org.au www.hepatitisc.org.au

or is secondary and occurs in association with some other medical or psychiatric disorder such as pain or depression.

The most effective long term treatment is cognitive behavioural therapy where a person relearns good sleep behaviours, such as “bed being a place for sleeping and not a place for tossing and turning, worrying, planning or being awake for longer than approximately a quarter of an hour”. This treatment can be found at specific sleep centres and from many GPs. Sleeping medication can be useful in periods of stress, but should only be used for a short time as individuals tend to lose their confidence about their ability to sleep.

When the individual is spending sufficient time in bed but snores and is often unable to stay awake during the daytime, then sleep apnoea could/can be suspected.

Sleep apnoea (apnoea = absence of breath) occurs when sleep is broken due to the individual being repeatedly roused as the brain is deprived of oxygen from partial or complete closure of the airway. Sleep apnoea is common and is prevalent in 5% of men and 2-3% of women.

feature

eep

A connection between diabetes and hep C

rtlett, writing for Healthy Heartwise magazine.

Untreated sleep apnoea has serious cardiovascular consequences with an increased risk of stroke and heart attacks. It is important to discuss daytime sleepiness, snoring problems or waking with a dry mouth or headache with your GP, especially if your bed partner tells you that you stop breathing during sleep. An overnight stay in a sleep laboratory will be able to confirm the presence of sleep apnoea.

T

The most effective treatment is continuous positive airway pressure (CPAP). Individuals wear a mask at night, attached to a machine which delivers air pressure and splints the airway open during sleep. Another treatment for less severe sleep apnoea is the mandibular advancement splint (MAS) which is similar to a mouth guard and increases the space at the back of the throat, reducing apnoeas.

Weight loss can also reduce the symptoms of sleep apnoea. Surgical treatment is not recommended at present based on current long term research outcomes, but may be beneficial for some individuals.

he increase in the number of cases of type-2 diabetes among people with hep C has been reported to be as much as four times higher than in the general population.

Other factors, such as obesity, which is characterised by a high body mass index (BMI), advanced age and family history of diabetes, are also associated with the higher incidence of diabetes among people with hep C. It is unclear why some people with hep C develop diabetes. However, we can speculate that the hep C infection is able to trigger autoimmune mechanisms against the insulin producing pancreatic beta cells in susceptible individuals.

• By Dr José Azócar, Medical Director, Northgate Medical, Springfield, Massachusetts, USA.

Other sleep disorders that are treatable include the movement disorders of Restless Legs Syndrome, periodic limb movement disorder; parasomnias (sleep walking, sleep talking, sleep terrors, night eating disorders; hypersomnia [narcolepsy] and circadian rhythm disorders).

Abridged from http://www.hcvadvocate. org/hcsp/articles/Azocar-1.html Also see p39 and ED61, p22.

Image of pancreas cells by Euthman, via www.flickr.com

More detailed information can be found on the Australasian Sleep Association website www. sleepaus.on.net/factsheets.html Delwyn Bartlett is secretary of the Australasian Sleep Association and Coordinator of Medical Psychology, Woolcock Institute of Medical Research, University of Sydney.

• This article reprinted with thanks from Healthy & Heartwise (Vol37) www.heartwise. com.au

The Hep C Review

ED62

September 2008

35

feature

Fight against hep B is also a battle against fea Chronic hep B affects up to 160,000 Australians but few understand much about it, writes Brian Howe.

I

magine a potentially life-threatening disease that afflicts a minority group unwilling to call for help because it may unleash a public backlash. The consequence is easy to predict: a silent epidemic that places the community at greater risk.

I’m not talking about HIV/AIDS, a disease Australians intelligently and courageously addressed a generation ago through a big public education and treatment campaign. I’m talking about hep B. Despite the fact that chronic hep B affects up to 160,000 Australians, few understand much about it. For important public health reasons, it’s time we did and time we insisted that state and federal governments adopt a national action plan to deal with it.

Hep B is a serious illness. Put most simply, it is a viral infection of the liver transmitted by infected blood or bodily fluids, and in most cases it can be treated with medication. If left undiagnosed or untreated it can lead to liver disease, cirrhosis, liver cancer, liver failure and death.

While it is classed as a sexually transmitted disease, in fact the main route of infection worldwide is from mother to baby. Fortunately in Australia we can guard against mother-to-baby transmission through vaccination of all infants shortly after birth.

The largest proportion of those infected with chronic hep B in Australia – who often feel constrained from speaking out – are Australians born in countries with high levels of hep B. The shame associated with the disease and the fear of provoking anti-immigration sentiment is stopping people living with the disease from speaking out, and is causing health officials to drag their feet in addressing it.

36

www.hepatitisc.org.au

The Director of the World Health Organisation’s Collaborating Centre for Virus Reference and Research, in Melbourne, Professor Stephen Locarnini, recently said the fear of stirring up xenophobia was so great that government health officials regarded the issue as politically “radioactive”.

The result is that the disease has received only a fraction of the funding of other viral illnesses.

Disturbingly, it is estimated that fewer than 5% of people with hep B are on some form of treatment – and those who are, often have difficulty accessing adequate services. There are no dedicated funds for medical research into this disease, or for creating community-based awareness and treatment programs. This contrasts with the more successful approaches Australia has adopted to combat HIV/AIDS and hep C. It’s true that Australia has a number of positive programs to prevent hep B. For instance, the blood supply is screened for it, pregnant women are offered screening and there is a universal vaccination program for babies and adolescents.

Ninety-four per cent of all infants are now immunised against it by the age of one.

But this approach does nothing to help people already living with chronic hep B. The efforts have to be accompanied by a strategy to educate migrant communities and primary care providers about the best way to manage the disease. Hep B can’t be cured but treatment can suppress the virus and stop its progression to more serious lifethreatening illnesses, so awareness and treatment are absolutely vital.

Ultimately, what is needed is leadership. We have to combat the ignorance and fear with education and science. This is especially important given that the actual risk of newly arrived migrants transmitting hep B to others is low. No matter what the bigots say or the gullible believe, we can’t put up walls against viruses, particularly

book review

B Positive

ar

a book about hep B when dealing with chronic hep B or C infection, which affect one in 12 of the world’s population and when so many nations lack universal hep B immunisation programs.

This means combating hep B is not an immigration issue but a public health risk minimisation issue.

The task for health authorities is clear: to improve our prevention efforts here in Australia, most notably by undertaking a public education campaign; to make the effective treatments that exist available to all Australians living with the disease; and to play our part in tackling and treating this disease globally – because in our multicultural nation, a global solution is the only real solution.

Having been a government minister in the 1980s and ‘90s, including three years as health minister, when Australia faced similar public health challenges, I know Australians are big enough and smart enough to put aside our prejudices and confront hep B without fear. If we don’t, we risk rising numbers of people with severe liver disease and greater pressure on our health services in the future. We must tell our leaders that it’s time to act.

After a decade of comparative inaction on hep B, we have a new government elected with a pledge to reduce chronic disease. Tackling hep B is its opportunity to live up to that important promise.

Australia has led the way before in public health campaigns of this sort and we can do it again.

• Abridged from The Sydney Morning Herald, 20 May, 2008.

Brian Howe, a former deputy prime minister and health minister, is patron of Hepatitis Australia and a supporter of the National Hepatitis B Alliance.

Professor Graham Cooksley reviews a new Australian book about hep B.

R

eading through this book, I thought what a pot of gold it was. It was written for primary care providers but it is also a good resource for gastroenterologists (both paediatric and adult), epidemiologists and public health workers.

It is also a good resource for other professionals whose work touches on hep B: nurses, teachers, surgeons, obstetricians, dentists and emergency services staff.

The book is comprehensive, beginning with epidemiology, proceeding to virology, natural history and then prevention (the most important weapon in combating this disease). It then deals with clinical assessment, laboratory assays, diagnostic strategies, the problems of hepatocellular cancer, and proceeds to treatment in a variety of clinical settings. Finally, it deals with occupational health, confidentiality and legal issues.

The contributors to each chapter have given an up-to-date authoritative account of the topic and yet have kept it practical and readable. People with hep C also may wish to consult this book to gain an understanding of their disease.

Hep B is arguably a most challenging issue.

Although it will be a long time before we can boast that we have defeated hep B, this book emphasises that we have the expertise needed to deal with it. We can all feel proud of this book.

• B Positive – all you wanted to know about hepatitis B: a guide for primary care providers. Produced by ASHM and The Cancer Council, NSW. Reviewed by Professor Graham Cooksley, Professorial Research Fellow, University of QLD. Abridged from www.ashm.org.au

The Hep C Review

ED62

September 2008

37

Council keyhole Continued from page 2.

Information resources were grouped under the heading “Info resources” and sub-grouped according to resource type (e.g. brochures versus booklets) rather than publisher (HCCNSW versus Hepatitis Australia). We imagined that many visitors would know whether they wanted a brochure or a booklet but might not know the difference between HCCNSW and Hepatitis Australia resources (as they are currently grouped). This common-sense, visitor-centred approach guides the rest of our new website.

First time visitors to our site will be greeted with a welcome message and a one-step easy read navigation ribbon across the page, featuring drop down contents. They will also notice five entry portals for various first time visitors: people with hep C, healthcare workers, students, volunteers, and supporters.

Each portal takes visitors to a welcome page that highlights which parts of our website might be of most interest and describes the website from their possible perspective, (e.g. the healthcare worker welcome page describes our partnership approach to healthcare sector and the veracity and sourcing of our information resources).

The customer is not always Englishspeaking On our homepage, people will find 15 links taking people directly to the corresponding language page within NSW Health’s Multicultural HIV/AIDS & Hepatitis C Service website. The links are written in original language script and no understanding of English language is needed to access hep C information.

Focus testing The value of focus testing cannot be understated.

Accordingly, we are about to seek 50 people to test-run it and provide feedback. We are planning five phone conferences each involving 10 people. We will give them the access URL, then talk through a series of steps and tasks, discussing the site’s navigation, appearance and content.

This feedback will be instrumental in our final polishing and fine tuning, prior to NSW Health approval and launch.

Wrap up While we anticipate our new website will go live in November 2008. However, our site is forever a ‘work in progress’. New technology

38

www.hepatitisc.org.au

will be incorporated as it becomes available and as staff resourcing allows (for example, we may incorporate blogs at the bottom of most pages that promote discussion on the page content).

Our website showcases the Council’s background, services and projects. It also represents a hub linking visitors to a wide range of other hep C related agencies. We will strive to ensure it plays an effective role in both regards.

In the meantime our existing site www.hepatitisc. org.au remains current and continues to inform and refer.

• HCCNSW Above images..

1. Reef to Outback // YWAM Townsville, via www.flickr.com 2. Iambigred, via www.flickr.com 3. via, http://images.google.com.au 4. Photographer Padawan, via www.flickr.com

feature

Mediterranean diet and diabetes Dr Norman Swan reports on a study in Spain that found people who stick closely to the Mediterranean diet have a lower chance of type 2 diabetes – a condition that has been linked to hep C.

T

he Mediterranean diet has scored another victory: this time against type 2 diabetes – the type that mostly develops in adulthood.

It just slips off the tongue doesn’t it – the Mediterranean diet – but what is it? Well it’s actually different depending on where you live around the Mediterranean, and is changing as hamburgers and chips take over. The diet is a pattern of eating and cooking that involves a lot of plant-based foods, virgin olive oil, not much meat, and a bit of alcohol.

A four-year study in Spain of more than 13,000 adults has found the closer a person sticks to the Mediterranean dietary pattern, the lower their chances of diabetes.

It wasn’t an ideal study because the people were probably healthier than the typical Spaniard to start with – although the people who stuck most closely to the diet in the first place had the highest pre-existing risk of diabetes.

They may have been more motivated, but even allowing for that, it suggests that the diet is even better than the average benefits would suggest.

There are a few reasons why Mediterranean eating and cooking might do the job. It lowers inflammation, is good for blood fats, and olive oil itself may make insulin work more efficiently.

So for the sake of your pancreas, lie back and think of Crete.

Abridged from ABC Radio Health Minutes, 23 June 2008.

Also see p35, and ED61, p22.

The The Hep Hep C C Review Review

ED62 ED62

September September 2008 2008

39 39

Image by Marysia, via www.flickr.com

• Dr Norman Swan, presenter of Health Minutes, is a multi-award winning producer, broadcaster and investigative journalist.

feature

2008 readership survey Want to know what you think of your Hep C Review? Here, we report back with an overview of our ED60 readership survey results.

Demographics Just over 100 readers responded to the survey.

Most were aged in their 40s or above, although around 25% were in their 30s.

There was an almost equal balance of men and women. Just over half lived in the Sydney region while the balance was made up of people from regional NSW and other States and Territories.

People who responded were divided almost equally between those who reached year 12 or less and those who had a tertiary education (college or university).

Although approximately one in three respondents worked in a health related job, the remainder came from a wide range of backgrounds: labouring, hospitality, entertainment, public service, trades, administration, management, legal, finance and sales. Around one in ten respondents was either unemployed or on a pension.

Eighty people who responded said they had contracted hep C, and of these readers, eight said they had cleared their hep C and were now PCR negative.

Twenty-six described themselves as healthcare workers and 20 described themselves as either “family or friend” of someone with hep C. Treatment background Of the 80 people who had contracted hep C, 32 had undertaken treatment and 25 had tried complementary medicine.

Magazine access Most respondents (74) received their magazine directly through the post, while others (21) picked it up at healthcare clinics. Four respondents accessed their copy via prison distribution.

40

www.hepatitisc.org.au

Magazine scoring We asked for feedback on a range of magazine features, including news, hep C articles, hep B articles, personal stories and research updates, etc.

No part of the magazine was scored negatively and our consistently high-scoring features included: • news items (positivity score of 81) • hep C articles (81) • research updates (79) • personal stories (77) • health promotion articles (72) • letters (71).

Eighty-five people compared to seven, felt we had a good balance of opinion within the magazine. Eighty-three compared to nine felt the images we use look good.

Changes made Most readers said that reading the magazine led to changes for them. Thirty-six felt more knowledgeable or understanding. Seventeen felt more positive and less isolated. Seventeen also made lifestyle and dietary changes. Eleven considered hep C treatment as a result of reading the mag.

Some additional comments “I think it’s great how it’s written; it isn’t dumbed down at all which is great so that people have the facts and information.”

“The mag is usually an uplifting experience due to the fact it contains positive stories and is very hands-on about self advocacy and lifestyle hints.”

“It is good that all this info is disseminated to the general public through a free magazine.”

“I’m in my mid-50s and will use drugs from time to time until I die. Society ostracises me because of this, but your mag shows me that I’m not alone – there are other people out there living similar lives.”

• HCCNSW

Image via http://images.google.com.au

I

n discussing the responses to our recent readership survey, we’ve drawn a very general picture of how most people responded. To see the finer detail, check out our fuller report at www.hepatitisc.org.au/

feature Image via http://images.google.com.au

Testing new drugs

This article from Medicines Talk describes the testing process for new medicines and highlights some process limitations.

N

ew medicines undergo considerable testing before being released for use in the community. Testing always begins with animal trials which, if successful, are followed up by human trials.

treat people with the disease for some years. This allows the effectiveness of the new medicine to be compared with no treatment or a known treatment.

Animal studies Potential new medicines are first tested on animals to determine whether they appear to be safe enough and effective enough to justify further testing on people.

Clinical trials Clinical trials (testing on people) are then carried out in four stages. The researchers conducting the trials must adhere to strict guidelines that specify how they must conduct the trials, and ensure that people fully understand what the trial involves and provide their consent.

Phase 1 trials Potential medicines are first tested on 20-80 healthy young people (usually men) to begin determining how the body reacts to the medicine, and to ascertain the dose that can safely be given to people in the next phase of testing.

Phase 2 trials The potential medicine is then given to 50-100 people who have the disease that the medicine is intended to treat. The aim of this testing is to further assess the medicine’s effects on the body.

The information is used to ascertain the smallest dose that is effective in most people, and the largest dose that most people can tolerate without experiencing unacceptable side effects.

Phase 3 trials The next stage of testing is designed to assess the medicine’s safety and effectiveness, and to determine the most appropriate dose.

To achieve this, 1000-3000 people with a disease are randomly divided into two groups. One group is given the potential medicine. The other group is given a placebo (harmless, look-alike pill) or another medicine that has been used to

People taking part in phase 1-3 trials are monitored closely for side effects, so a picture of the medicine’s side effects can start to emerge.

However, the picture is always incomplete. In particular, it is unlikely to include the uncommon and rare side effects. Identifying such side effects is not usually possible until many thousands of people have used the medicine. This may occur only when the medicine has been used in the community for several years.

Governments use the results of phase 3 trials to determine whether the medicine is safe and effective enough to be approved for use in their country. Not all new medicines obtain government approval.

Phase 4 trials All new medicines are monitored after being approved for use in the community. Some also undergo further phase 4 testing. Such testing may run for several years, following thousands of people undergoing treatment with the medicine.

Phase 4 testing allows researchers to learn more about the medicine and helps them to resolve uncertainties about the medicine’s safety, side effects and most appropriate use. For example, it may be used to determine whether the medicine should be the first treatment tried for a condition, or whether it should be used only if other treatments have not worked.

Phase 4 trials take a long time but often provide more useful information than earlier trials as they test the medicine in real-life situations.

• Abridged from Medicines Talk, Spring 2007:6-7

The Hep C Review

ED62

September 2008

41

feature “Hello, my partner has had hep C for about 20 years and recently began experiencing many symptoms. I have reduced my work hours so I can spend more time helping her. I am feeling emotionally and physically drained and finding it difficult to cope with the level of care she now needs.”

It is normal to find that caring for someone becomes difficult and challenging at times.

Caring for someone can have a big impact on all aspects of your life and routine.

It is common for care-givers to experience a wide range of emotions, including depression, loneliness, loss, grief and fear. You may be worried about the security of your future, the possibility of being a sole financial provider or your partner’s long-term health. You may also feel insecure or guilty about your ability to give adequate support. You may feel angry about how your life has changed. All these things may be affecting your ability to cope as a carer.

Care-givers are at a higher risk for mental and physical health problems than non-caregivers, especially if you put the needs of your loved one before your own. The best way you can care for your loved one is to look after yourself first.

The following suggestions may make your time as a carer easier: • Ensure you make a commitment to your own health. This will mean getting adequate sleep, eating a healthy diet and some regular exercise.

• Get some support. Find out if there is a carers group in your community. Connecting with other carers through support groups is one way to overcome isolation.

• Try taking breaks from care-giving. See friends, go for a walk, or read a book. Do something that will revitalise you.

• Do at least one thing you enjoy everyday and try to maintain a life outside of your caring role. Know your own limits.

• Understanding the needs of the person you are supporting is important. Learn as much as possible about their illness. Knowing which behaviours are a result of the hep C or medication side effects may help you not take things personally.

Some care-givers can experience warning signs that they may not be coping well with their situation. For example; uncontrollable anger, depression, thoughts of harm to another, misuse of drugs or alcohol or sleeping and eating changes. You should seek help if any of these occur.

You may have loved ones or friends who have hep C. Whether they are asymptomatic, struggling with multiple symptoms or on treatment, their illness may affect you. Staff from the Hep C Helpline can talk with you about how to best provide support. We can also provide referrals to organisations in your area. Call us on 1800 803 990.

•

• Accept your feelings and talk about them.

Talking with a counsellor will give you an outlet for your emotions.

• Ask for help when you need it. Share the care with family and friends. Don’t feel as though you have to do everything on your own.

Research has shown that the carers who feel in the most control are those with the most assistance.

‘Hello Hep C Helpline’ is brought to you by the Hep C Helpline team. The questions are based on genuine calls; however, some details have been changed to ensure caller anonymity.

42

www.hepatitisc.org.au

Hep C Helpline (Some of this article was adapted from CARERS NSW resources).

Also see our promotion of a research project looking at the support needs of carers, p46.

promotions

6-8pm, 23 September 2008 Hepatitis C Council of NSW Level 1, 349 Crown St, Surry Hills

Jailbreak radio show has new timeslot Jailbreak is a ½ hour RADIO show, with music, stories, opinions and handy information for prisoners, families and the community. Jailbreak promotes health and wellbeing by providing information on criminal, prison and health issues, as well as connecting prisoners to the community through their views, music and poetry.

The show seeks to raise community awareness about prison and provide support and referrals for those affected by prison.

Jailbreak now broadcasts each Tuesday at 6.30 PM, in and around Sydney on 2SER 107.3 FM You can also play or download selected shows at anytime via www.crcnsw.org.au and follow the links to Jailbreak. • For more information about the show, write to [Jailbreak, 2SER, PO Box 123, BROADWAY NSW 2007] or contact us at CRC by emailing info@crcnsw.org.au or phoning us on (02) 9288 8700.

The Hep C Review

ED62

Images via http://images.google.com.au

September 2008

43

promotions

Access All Areas

This DVD is an information resource for injecting drug users, especially heroin users. It aims to explain drug treatment options as well as the treatment of other drug-related health problems such as dental care, hepatitis and overdose.

The DVD may be useful for health care professionals or others who work with people who use drugs, and may also be used as an aid to teaching clinical students.

Access All Areas may also be of interest to family members and carers of people who use drugs, helping them get a better understanding of what treatment is, how it works, and how to get the most out of it.

To obtain free copies of the DVD, please contact: phd@nationalmailing.com.au or 1800 020 103 (ext 8654) or visit www.alcohol.gov.au The Hep C Helpline also has free copies to give away. Call 1800 803 990

VOLUNTEERS SOUGHT FOR MEDICAL TRIAL Are you suffering from chronic hep C? Have you failed to respond to standard treatment?

If you answered yes to both these questions then you may be interested in participating in a trial studying a new combination treatment.

You will be under specialist supervision and incur no out of pocket expenses. The trial will be carried out in conjunction with your own doctors.

If you are interested, please contact: The Research Department, Centre for Digestive Diseases Telephone: (02) 9713 4011 (press option ‘3’) or email: clinical_trials@cdd.com.au

44

www.hepatitisc.org.au

Call for hep C study volunteers The Storr Liver Unit at Westmead Hospital is recruiting people with hep C to take part in a study looking at genetic factors of response to combination antiviral therapy.

You should: • Previously or currently have genotype 1 chronic hep C infection.

• Previously have completed combination therapy with interferon and ribavirin therapy, IRRESPECTIVE of treatment outcome.

There is only one visit, which takes less than 30 minutes and involves the collection of a sample of blood.

Please call Dr Vijay Suppiah on 9845 6749 for more information.

• This project has been approved by the Sydney West Area Health Service Human Research Ethics Committee.

membership matters You are vital to us – We are here for You AUDREY LAMB COMMUNITY FORUM AND ANNUAL GENERAL MEETING COME TO OUR NEXT AUDREY LAMB COMMUNITY FORUM AND Annual General Meeting ON THURSDAY 13 NOVEMBER 2008…our previous community forums have been well attended and most informative. Please join us for a chance to talk with and hear experts discussing the latest developments in hepatitis C management and care. As a current financial member you will be entitled to vote on issues directing the Council and be kept up to date with what’s happening. Please see the enclosed Notice of Annual General Meeting for further details.

ZERO FEE MEMBERSHIP CATEGORY So that as many people as possible may benefit from membership of the Council, there is a Zero Fee membership category designed to assist people in severe financial hardship such as those in correctional facilities. Zero Fee membership carries the same rights and responsibilities as other categories and requires renewal in March each year.

WHY DO WE APPRECIATE YOUR DONATION? Donations help cover the costs of essential advocacy initiatives (such as advocacy work with the NSW government and area health services in order to enhance treatment capacity), for which we receive minimal government funding.

6TH AUSTRALASIAN VIRAL HEPATITIS CONFERENCE - BRISBANE 20-22 OCTOBER 2008 Congratulations to the community members who were awarded a Council scholarship to attend this conference.

Hep C treatment promo resources

T

his new and exciting resource set includes a series of six easy-read postcards that aim to raise the awareness of hep C treatment across NSW. The six themes portrayed through a casual conversation approach are:

To order supplies of the promotional set, phone the Hep C Helpline on 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) or download a resources order form from www.hepatitisc.org.au/resources.html •

HCCNSW

• hep C treatment exists • support is available • hep C treatment is available in prison • people who inject drugs can access treatment • the cost is minimal • liver biopsy is no longer required to be eligible for treatment.

The postcards are accompanied by matching A3 posters and small stickers.

The Hep C Review

ED62

September 2008

45

promotions Are you currently on treatment for hep C? Have you recently been on treatment for hep C? Do you have family or friends providing you with support?

Would you like to see improved services for support people?

We are looking for volunteers to complete a brief survey Sydney South West Area Health Service is recruiting people on hep C treatment, and their support people, to complete a brief survey on support needs.

We will use the information gathered to improve our services for people who are providing support to someone on hep C treatment.

We are looking for: • People who have been on hep C antiviral treatment for at least 8 weeks, or completed treatment no more than 3 months ago, and live in Sydney’s inner west.

• A family member, partner, friend or other support person who is providing/has provided practical, emotional or other support to the person on treatment.

The surveys are around 12 pages long and take 15-20 minutes to complete.

We will post surveys for you and your support person to complete and return to us by prepaid post. All surveys are confidential and the information will help us develop resources or services to assist family members or friends who are providing support to people on hep C treatment.

You will be reimbursed for your time.

Please call Scott Rutter, Hepatitis C Health Promotion Officer – SSWAHS (Inner West) on 9515 5293 for more information.

• This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney South West Area Health Service.

To organise a time to speak to a volunteer phone

9332 1599 (Sydney) 1800 803 990 (Freecall NSW regional) 46

www.hepatitisc.org.au

halc

promotions

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

HALC is an accredited community legal centre that provides free advocacy and advice. Our solicitors understand the unique legal needs of people living with hep C. We frequently provide assistance in the following areas: • Immigration • Discrimination and vilification • Superannuation, insurance and employment • Privacy and Health Care Complaints • Enduring Power of Attorney and Enduring Guardianship.

When advocating on your behalf we understand the importance of confidentiality and practise 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

Do you provide a service or have a research study that will benefit people with hep C? We’ve reserved this space, free of charge, for you!

Give us a call on 9332 1853 or email paulh@hepatitisc.org.au (conditions apply)

ONLINE & CONNECTED ONLINE FORUM The Australasian online internet support forum Hep C Australasia provides a secure and supportive environment for people affected by hep C. Here, you will find conversation threads, chat room, blogs, private messaging and more.

http://hepcaustralasia.org COUNCIL WEBSITE The Hepatitis C Council of NSW website is internationally accredited and contains a wide range of hep C related information.

Our quarterly magazine, The Hep C Review, is fully accessible with over 10 years worth of editions downloadable as PDFs.

In addition to detailed downloadable factsheets, the site features search functions and an email ‘Your Questions Answered’ facility.

All hep C info resources frequently used in NSW are viewable as PDFs and the site carries research news and reports.

www.hepatitisc.org.au

The Hep C Review

ED62

September 2008

47

promotions

hep C bookmarks O

ur hep C bookmarks (below) have proved to be a great way to promote greater hep C awareness within the general community. Almost 250,000 have been distributed across NSW via many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

Can you help raise awareness by distributing the bookmarks?

Ideas include: • Taking them to doctor’s surgeries in your area.

• Taking them to your local library (to see whether it is a participating library).

• Taking them to your local community centre.

If you are able to help, we can supply as many bookmarks as you need. Just go to our website and download one of our resources order forms, or phone the Hep C Helpline (on 1800 803 990).

• HCCNSW

A historical perspective .. taken from Edition 2, September 1992.

In November last year (1991), a group met at Westmead to discuss the formation of a support group. We decided the first thing to do was to try and get the public more aware of the disease and how it should be handled.

There have been TV interviews, numerous radio and press releases throughout NSW particularly after it was found that 10 people had contracted hep C from blood transfusions in Gosford after screening of blood was introduced.

As a result, the 008 information line was set up on 18 May 1992 and during the next two months handled an average of eight calls per day.

Meanwhile we have held meetings for our members and interested members of the public.

Professor Geoff McCaughan and Dr Chris Liddle have spoken; videos of disease progression have been shown; and Rob Booker, grief counsellor from Sydney Hospital has discussed the conflicts we all face. Thanks to Anita who kindly lent her home for several of the meetings.

We have had posters distributed and put up in Drug and Alcohol Centres, thanks to the efforts of Steven and Sharlene who photocopied a lot of material for us.

We have sent out hundreds of information packs and have made the decision to only include the Public Health sheet, Hepatitis Glossary and our membership form and to impose an extra $5 for our “big packs” as they were costing us $4.35 in photocopying and postage.

There is now a support group set up in Perth, as well as one in Newcastle and on the Central Coast of NSW. We have contacts in each of the states (and also in each area of NSW) who have agreed to be the contact person for their area and we are hoping that they will eventually form groups as hep C numbers grow.

At the inaugural Annual General Meeting held on 8 September [1992], it was decided to go ahead with incorporation of the group so that we gain more financial credibility.

• HCCNSW (Sept, 1992)

48 48 www.hepatitisc.org.au www.hepatitisc.org.au

promotions Hepatitis B: what you need to know

Have you finished treatment for hep C?

Two billion people worldwide have been exposed to hep B and up to 160,000 people in Australia have chronic hep B – an infection which can cause damage to the liver.

Produced by the Hepatitis Council of QLD and Hepatitis Australia, this new booklet provides simple informative answers to the frequently asked questions about hep B.

If you completed hep C treatment at least six months ago, we would like to talk to you about your experience of life after treatment.

To view the booklet, go to www.hepatitisc.org.au/ resources/documents/HepB. pdf

• Interviews last for about an hour.

• Please contact Max on 9385 6436 or nchsr@unsw.edu.au to arrange an interview.

To obtain copies of the booklet, phone the Hep C Helpline (on 1800 803 990).

This is a research project of the National Centre in HIV Social Research, The University of New South Wales.

• HCCNSW

20-22 October, 2008 For information, visit the conference website: www.hepatitis.org.au

The Hep C Review

ED62

September 2008

49

research update Disease progression: Diabetes may increase hep C modifiable and non-modifiable liver cancer risk factors The Netherlands – Diabetes increases the risk Canada – The hepatic complications of chronic hep C (CHC) usually occur only after progression to cirrhosis has taken place. Progression to cirrhosis, however, is extremely variable and depends on a broad set of host and viral factors that modify the rate at which fibrosis develops in a given individual.

Despite their inherent limitations, studies of the natural history of CHC have identified several nonmodifiable factors associated with disease progression. These include age at acquisition of infection, sex and race. More recent reports suggest important roles for host genetic and viral factors. Of greater immediate relevance to patients and their clinicians are the potentially modifiable factors, which include excessive alcohol consumption; smoking (tobacco and marijuana); insulin resistance; and coinfection with hep B virus, human immunodeficiency virus type 1, or schistosomiasis.

Unfortunately, to date, there are no reliable predictive models that can accurately estimate the risk of CHC disease progression.

Disease progression in chronic hepatitis C: modifiable and nonmodifiable factors.

Missiha SB, et. al. Gastroenterology May 2008;134(6):1699-714.

for hepatocellular carcinoma (HCC, liver cancer) in patients with hep C and advanced cirrhosis, according to the results of a study reported in the June issue of Hepatology.

“Recent epidemiological studies suggest that the presence of diabetes mellitus increases the risk of HCC,” said Dr Bart Veldt, from the Erasmus MC University Medical Center in Rotterdam, the Netherlands.

“An explanation for this association may be that diabetes often occurs as part of the metabolic syndrome, which increases the risk of nonalcoholic steatohepatitis (NASH), and that HCC can be a late complication of NASH.” In a large cohort of people with chronic hep C and advanced fibrosis, the investigators aimed to quantify the risk for HCC in patients with both diabetes mellitus and hep C. The risk for diabetes mellitus was increased for people with elevated body mass index, and the risk for diabetes mellitus was decreased for those with higher serum albumin levels.

During follow-up, HCC developed in 11 (13%) of people with diabetes mellitus vs 27 (5.9%) of people without diabetes mellitus. The fiveyear occurrence of HCC was 11.4% and 5.0%, respectively. Diabetes mellitus was independently associated with the development of HCC.

Abridged from www.medadvocate.org Increased risk of hepatocellular carcinoma among patients with hepatitis C cirrhosis and diabetes mellitus. Veldt B, et. al. Hepatology.

2008;47:1856-1862.

Abridged from www.medscape.com

In previous readership surveys, many people said that they wanted detailed information on hep C. These ‘research update’ pages attempt to meet this need.

Individual articles may sometimes appear to contradict current knowledge but such studies are part of overall scientific debate. They help broaden our overall knowledge and help develop consensus opinion on a particular research topic.

The following articles 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 NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). ED

50

www.hepatitisc.org.au

research update Hep C prevalence and risk factors in Aboriginal and non-Aboriginal adolescent offenders Australia – This study set out to define and compare the prevalence, risk factors and understanding of hep C transmission among Aboriginal and non-Aboriginal young offenders.

Design, participants and setting: Cross-sectional study of young offenders (aged 12–19 years; median age, 16.6 years) in custody or serving community orders with the New South Wales Department of Juvenile Justice who participated in a physical and mental health survey between March 2002 and December 2005, and who provided blood samples for analysis of biochemistry, bloodborne viruses and sexually transmitted infections.

Main outcome measures: Risk factors and prevalence of hep C antibody positivity.

Results: Of the 1,042 young offenders studied, 709 provided blood samples, 179 (25%) of whom identified as Aboriginal.

Aboriginal adolescents had more markers of social disadvantage and higher rates of hep B (9.6% v 5.2%) than non-Aboriginal young offenders. Hep C rates were high in both groups (7.3% v 5.3%).

Risk factors for hep C were the same in both groups, the most important being injecting drug use and prior use of heroin. Current custodial sentence doubled the risk of hep C. Knowledge of hep C transmission was very poor in both groups, with more than 50% not knowing how it is transmitted and fewer than 10% able to identify sharing needles as a risk.

Conclusions: Hep C rates are extremely high in all young offenders and interventions to halt its spread are urgently needed. Aboriginal adolescents, who are over-represented in this population, are particularly at risk.

Prevalence of and risk factors for hepatitis C in Aboriginal and non-Aboriginal adolescent offenders. van der Poorten D, et. al. MJA 2008; 188: 610–614

Citalopram effective for hep C treatment related depression Germany – The selective serotonin reuptake inhibitor (SSRI) citalopram is effective in patients with hep C who develop depression in association with interferon treatment, according to a report by German researchers in the April issue of Gut. Given the effectiveness of the drug, prophylactic treatment of depression in these patients is not necessary, the researchers add.

Dr Michael Kraus from the University of Wurzburg studied 100 outpatients during combination treatment. In the 28 patients (28%) who developed depression, researchers compared the effectiveness of citalopram vs placebo.

In depressed patients, Hospital Anxiety and Depression Scale (HADS) scores had increased significantly during antiviral treatment but decreased significantly within four weeks after initiation of SSRI treatment. Placebo patients showed no significant improvement in HADS scores.

The study was terminated prematurely after a planned interim analysis showed a significant advantage for SSRI treatment.

Open-label citalopram therapy produced a “prompt and significant decrease” in depression scores in all five patients who failed placebo treatment, the report indicates.

There were no reported side effects that could be attributed to citalopram.

“During antiviral treatment, patients should be evaluated 3-4 times per 6 months,” Dr. Kraus said. “Moreover, patients should be encouraged to always report severe depressive symptoms/ adverse events at once, irrespective of the planned screening schedule.”

Therapy of interferon-induced depression in chronic hepatitis C with citalopram: a randomised, double-blind, placebocontrolled study. Kraus MR, et. al. Gut 2008; 57: 531-536.

Abridged from www.medscape.com

Abridged from http://healthbulletin.org.au

The Hep C Review

ED62

September 2008

51

research update Experiences of hep C treatment and its management: what some patients and health professionals say Australia – Since hep C was identified in 1989, increasingly more-effective drug therapies have been developed to treat it. Today, treatment combines pegylated interferon and ribavirin in a regimen lasting for either 24 or 48 weeks depending on viral genotype. Treatment is considered successful if people attain a sustained virological response (SVR), that is, if the virus remains undetectable in a person’s blood for a period of six months after treatment is over.

Current treatment is associated with significant reductions in health-related quality of life caused by medication side effects. Significant numbers of people have difficulty adhering to treatment and discontinue therapy.

Method A qualitative study of treatment experiences and management of treatment, using in-depth semistructured interviews, was conducted in Sydney, during 2004 and 2005.

The study aimed to uncover some of the strategies that people in treatment used to cope with the side effects associated with treatment. A total of 20 people who either were receiving treatment or had completed treatment within the six months prior to interview were recruited. Six health professionals who managed treatment regimens were also interviewed.

Treatment and its side effects were explored from the perspectives of patients and clinic staff. The impact of treatment on personal relationships, work, socialising, physical and emotional health and wellbeing, sense of self and future outlook were investigated. Analysis highlighted key themes and issues as reported by patients and health professionals.

Side effects and coping strategies People reported a wide array of physical and psychiatric side effects related to hep C treatment.

While many people shared common side effects, treatment was characterised as an experience that affected individuals in diverse ways. Participants reported having difficulty separating psychiatric side effects from the negative impact on mood brought about by having to cope with chronic

52

www.hepatitisc.org.au

physical impacts related to treatment. Participants also discussed the cumulative impact of treatment, which included fatigue, insomnia, irritability, depression and cognitive impairment.

Commonly accessible medications often helped to address many of the physical side effects. However, participants reported that treatment-related impacts on mood were difficult to predict, contributed to a substantial reduction in quality of life and were challenging to manage, clinically.

To reduce the severity of side effects and better adhere to treatment, people incorporated a range of medical interventions and personal coping strategies into their treatment regime. These included planning and preparation, garnering support, anger- and stress-reduction techniques, work, rest and relaxation and adopting a healthy lifestyle and positive attitude.

Support during hep C treatment A central theme about people’s support networks during treatment were the issues of stigma and fear of discrimination. People discussed their concerns about garnering support: who could they trust with the information that they were being treated for hep C? This could be especially problematic for those who continued to work.

Participants who had disclosed to partners and family generally reported having received high levels of support, but the mere act of telling loved ones about treatment did not ensure satisfactory and appropriate care at home.

Mood changes as a result of treatment interrupted family dynamics and strained relationships within normally well-functioning family units. For example, treatment at times negatively affected parents’ relationships with their children. Family members had to adjust to the circumstances that arose from the impact of treatment.

Support groups also reportedly assisted people during treatment. Health professionals identified a need for such support groups and established peerbased models which allowed patients to share with others their treatment experiences and strategies for coping.

Disclosure of being in treatment, and hep C related discrimination Disclosing that one is having hep C treatment can lead to discrimination because of the association of hep C with injecting drug use. When people disclose they managed it in multiple ways in order to facilitate treatment uptake, garner support and

research update avoid discrimination. Data analysis uncovered four approaches to disclosure adopted by participants: (i) non-disclosure, where participants told no one they were receiving treatment; (ii) strategic disclosure, where they told only carefully selected individuals; (iii) substitute disclosure, where they used a euphemism like ‘treatment for liver disease’; and (iv) open disclosure, where they told anyone and everyone about being in treatment.

These findings are relevant to GPs advising newly diagnosed patients, to health professionals responsible for initiating and managing treatment, to people considering treatment and to those developing information resources.

Unrealistic optimism A factor that affects people’s preparation for treatment and their ability to cope with it is a psychological construct referred to as “unrealistic optimism”. This describes people’s tendency to believe that they are less likely than others to experience adverse outcomes. It becomes a problem when people believe they are unlikely to experience adverse outcomes from the side effects and do not adequately prepare themselves.

Or, similarly, they believe they have protected themselves sufficiently from side effects and then ignore evidence to the contrary.

Unrealistic optimism was evident in the interview transcripts. Health workers also reported that people were at times overly optimistic. For example, people reported that because they had not experienced mental health problems in the past, they would be unlikely to experience psychiatric side effects during treatment.

Health workers suggested unrealistic optimism needed to be addressed during pre-treatment counselling.

Resilient coping Resilient coping is defined as the ability of people from normal circumstances to maintain relatively stable and healthy levels of psychological and physical functioning when confronted with a highly disruptive and potentially traumatising situation or change in circumstances (Bonanno, 2004).

An emerging body of evidence indicates that even under circumstances of considerable social disadvantage people can develop adaptive coping strategies that enable them to withstand subsequent adversity. People who are receiving hep C treatment are often from marginalised and socially disadvantaged backgrounds, and side effects of

treatment are acknowledged to have a detrimental impact on quality of life. Participants in this study reported having coped with the side effects of treatment by adopting coping strategies learnt during past experiences of drug dependence, living with chronic illness, poverty, coping with childhood sexual abuse and depression. The data suggests that factors and processes that help people cope with adversity (associated with marginalisation and social disadvantage) can assist them to cope with the side effects of treatment. Promoting strategies that foster resilience among people on treatment might be beneficial in helping them complete their treatment.

Strengths-based assessment in the management of treatment Many people on treatment have their dose reduced or discontinue treatment because of adverse side effects. However, there is no published literature that explores how health workers prepare people for treatment and only a small amount regarding the management of adverse events as a result of treatment. This chapter of the final report presents findings on the management of treatment, with a particular focus on how people were prepared for it. Study participants reported that they were given information about side effects and the medical strategies that could lessen the impact of these side effects. Health workers assessed people’s vulnerabilities and support networks prior to treatment, and adopted a problem-focused approach to the management of treatment; that is, they addressed people’s crises as they arose. Health workers discussed in interviews patients’ resilient coping strategies and the advantages of applying strategies learnt from past hardship to help them to complete treatment. In this chapter, we also discussed the value of ‘strengths-based assessment’ during preparation for treatment.

Further research should investigate the contribution that assessing patients’ strengths can have on reducing the impact of side effects and treatment adherence. If more people can finish their treatment and in doing so, stick to their correct dosage, then more will successfully clear their hep C infection.

Experiences of hepatitis C treatment and its management: what some patients and health professionals say. Assoc Prof Carla Treloar, Dr Max Hopwood, Louise Redsull. National Centre in HIV Social Research, 2006.

Abridged from www.nchsr.arts.unsw.edu.au

The Hep C Review

ED62

September 2008

53

interferon-based therapy Peg interferon alpha and ribavirin Overview Standard pharmaceutical treatment for hep C consists of a combination of weekly self-administered injections of pegylated interferon and ribavirin pills taken orally daily.

Treatment generally lasts for either 24 or 48 weeks, depending on which hep C genotype a person has.

S100 government subsidised treatment information Subsidised ‘peg combo’ treatment for people with chronic hep C is available to those who satisfy all of the following criteria: 1 Blood tests: people must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive).

2 Contraception: women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both a 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 person). Female partners of men undergoing treatment must not be pregnant.

3 Age: people must be aged 18 years or older.

4 Treatment history: people must not have had prior interferon or peg interferon treatment.

Duration and genotypes For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks.

Monitoring points People with genotype 1, 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. The baseline and 12-week tests must be performed at the same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary

for people with genotype 2 and 3 because of their higher likelihood of early viral response.

People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2 log drop in viral load, may only continue treatment after 24 weeks if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may only continue treatment after 24 weeks 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.

Liver biopsy no longer a general requirement for treatment From 1 April 2006, a biopsy examination is no longer a mandatory pretreatment test for people wanting to access government subsidised S100 hep C pharmaceutical treatment.

Note that some people with genotype 2 or 3 may still require biopsy to determine whether they have cirrhosis or

CAUTION Treatment with interferon alpha has been associated with depression and suicide in some people.

Those people with a history of suicide ideation or depressive illness should be warned of the risks.

Psychiatric status during therapy should be monitored.

A potentially serious side effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised PegInterferon Alpha-2b if they meet certain criteria.

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.

54

www.hepatitisc.org.au

complementary medicine bridging fibrosis – which would have an impact on treatment monitoring. See ‘Monitoring Points’, lower left.

For further information on this issue, please speak to your treatment specialist.

Alternative access People wanting to access Interferon-based therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs.

For more information, people should contact their nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see p52).

Complementary medicine Good results have been reported by some people using complementary therapies, 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 (Ed 15, p 6). A similar trial, but on a larger scale, was later carried out (Ed 24, p 8).

A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (Ed 45, p 9).

• A nurse educator/counsellor for patients

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

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

• 24 hour access to medical advice for patients

• Will they consider all relevant diagnostic testing?

• An established liver clinic

• Will they consult with your GP about your hep C?

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:

• Facilities for safe liver biopsy.

Treatment centres exist in most parts of NSW. Phone the Hep C Helpline for the contact details of your nearest centre.

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

• HCCNSW (above info is reviewed by the Commonwealth Department of Health prior to publication).

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

• How has their complementary therapy helped other people with hep C? • What are the side-effects?

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

• How have they measured the health outcomes of their therapy?

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 arrangements about payment; perhaps a discounted fee?

It is also important to continue seeing your regular doctor and/ 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 well experienced in working with people who have hep C. Additionally, they should be members of a relevant professional association.

Phone the Hep C Helpline (see p56) for more information and the contact details of relevant professional associations.

• HCCNSW

C ReviewED62 ED62 September September2008 2008 55 The The HepHep C Review

support / info services NSW Hep C Helpline For free, confidential and non-judgmental info and emotional support, phone the NSW Hep C Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referral to local health care and support services: • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers) Prisons Hep C Helpline A special phone service provided through the NSW Hep C Helpline that can be accessed by NSW inmates 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 www.daa.asn.au General Practitioners It is important that you have a well-informed GP who can support your long-term health care needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system. The NSW Hep C Helpline may be able to refer you to doctors and other health care workers in your area who have been involved in hep C training.

Alcohol and other drug services People who inject drugs and want to access peer-based info and support can phone NUAA (the NSW Users and 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 drug or alcohol related problem. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW) for advice and details on your nearest clinic.

56

www.hepatitisc.org.au

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.

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

Sexual health clinics Although hep C is not classified as a sexually transmissible illness, these clinics offer confidential pre- and post-test discussions and HCV blood tests. 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.

Neighbourhood Centres can be found by phoning your local town Council.

Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English and for more details, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hep C Helpline distributes some information resources in various languages.

Further, 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

support / info services Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C related legal issues. They offer advocacy and advice on a number of problem types including: immigration; discrimination and vilification; superannuation and insurance; employment; privacy and health care complaints; and the appointment of attorneys and guardians.

For more information, phone 9206 2060 or 1800 063 060, or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who are affected by hep C and have been through treatment. This is a free and confidential phone based service which anyone in NSW can access. To speak with a volunteer please phone 9332 1599 or 1800 803 990 (Freecall from regional NSW).

Nepean Hep C Support Group Guest speakers keeping you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept.

Lecture Room (Somerset Street entrance), Nepean Hospital. For further information, please contact Vince on 4734 3466.

Northern Rivers Liver Clinic Support Group An opportunity for people contemplating treatment, undergoing treatment, and for those who have completed treatment to get know each other. For more information, please phone 6620 7539.

Port Macquarie Hep C Support Group Peer support available for people living with or affected by hep C. For information, please contact Lynelle Wood on 6588 2750 or Alison Mears on 0418 207 939.

Hep C Australasia 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 Radio HepChat HepChat is a weekly radio program that can be heard on Radio 3CR, Melbourne, or across Australia via the internet. The program broadcasts every Thursday morning between 10.30 and 11am, (Eastern-Standard-Time). Go to 3CR’s website at www.3cr.org.au and follow the prompts.

Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Hunter Hep C Support Services A service for all people of the Hunter region living with hep C. It is linked to a team of health care professionals specialising in hep C treatment and care. Based at John Hunter Hospital, New Lambton. For information, please contact Gabrielle Murphy on 4922 3429 or Tracey Jones on 4921 4789.

St Vincent’s Support Group, Darlinghurst This treatment-related support group meets on the first Tuesday of each month. St Vincent’s Hospital, Darlinghurst. For information, please contact Zoe Potgieter 8382 2887.

Parramatta Support Group A support group for people living with hep C, including those on treatment. From 7pm to 8.30pm, the first Thursday of each month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 158 Marsden St, Parramatta. There is no parking on site. It is a 10 minute walk from Parramatta station. For information, please contact Susan on 9845 5627.

Westmead Hep C Information Night Our Information Nights are organised for people with hep C, families, friends and interested others. Parking is available at the hospital but you will need five dollars in coins. Alternatively, it is about a ten minute walk from Westmead station.

Go to the main entrance of the hospital and ask for directions at reception, or look for our signs.

There is no charge for the Information Night and people from any area are most welcome. For information, please contact Susan on 9845 5627.

The Hep C Review

ED62

September 2008

57

noticeboard Our loan library Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require.

Items are loaned free of charge but you need to pay return postage.

Videos/DVDs The Big Combo (HCCNSW, 2002): 20 min DVD with two people who consider pharmaceutical treatment for hep C in very different ways; information on current treatment and interviews with treatment specialists. Available with subtitles for people with hearing difficulties. English.

Everybody’s Business (MHAHS/ANCAHRD, 2004): Covering hep C and HIV; suitable for health workers working with groups. Comes with a facilitator’s workbook. Available in English, Khmer, Somali, Indonesian and Thai.

Look Back Look Forward (Kathy Sport/Ronin Films, 1998): 30 min video with real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers. English.

(Members only) Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hep C clinical management, treatment and prognosis.

Suitable for health workers. (Members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hep C management, treatment and lifestyle issues, as well as other liver disorders.

Suitable for individuals and health workers.

(Members only) •

HCCNSW

Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information: www.hepatitisc. org.au/hepcouncil/disputes_policy.pdf Or phone us here at the office (see page 3 for our contact details).

58

www.hepatitisc.org.au

Did you know

that the following factsheets are free to download from our website?

Antibody testing Australian snapshot Blood & organ donation Complementary therapies Council history Council overview Diet Disclosure Discrimination Disposing of fits Fatigue First aid & general precautions Genotypes Harm minimisation Heps A, B & C HIV coinfection Liver biopsy Liver function testing Liver transplant Natural history Painkillers PCR availability PCR & HCV transmission Pegylated combo therapy Pregnancy, babies & children Prevention Sexual transmission Stress Superannuation Support services Symptoms Tattooing Test counselling Treatment consent Treatment response Treatment side effects Workplace issues

www.hepatitisc.org.au

membership form / renewal / tax invoice An invitation to join or rejoin the Council Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About the Council We are a community-based, non-government, membership organisation and a health promotion charity.

Our role is to represent and provide services to people affected by hep C throughout NSW. The Council is overseen by a voluntary Board of Governance, primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.

Privacy policy The Hepatitis C Council of NSW respects and upholds your right to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information.

For a copy of the policy, please contact the Council office on 02 9332 1853 (Sydney and non-NSW callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hepatitisc.org.au

1. Please complete A or B or C, then complete other side

A. For people affected by HCV, or other interested people Name Postal address

Suburb/town State

Postcode

Home phone

Email:

B. For individual healthcare or related professionals Name Occupation Postal address

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

Membership

May we list you on our referral database?

Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) must renew their memberships on an annual basis. Membership income assists the Council greatly in its work throughout the year.

Free copies of The Hep C Review required

NSW health care workers One of our services is the NSW Hep C Helpline, an information and support phone line that is able to refer callers to a range of services and health care workers in their local area (within NSW only).

If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular HCV update information. Please note that we encourage services on our referral database to become members of the Council.

1

2 5 10 20 50 80 160

C. For agencies, organisations and companies Name of agency Contact person Position Postal address

Suburb/town

As the most widely-read hep C publication in NSW, targeting both people affected by hep C and health care workers, The Hep C Review is provided free to all members of the Council.

State

Postcode

Work phone

Work fax

Mobile

Email:

In NSW, if your service has clients/patients who may be interested in The Hep C Review, please indicate the number of extra copies you would like to receive on this form.

May we list you on our referral database?

Free copies of The Hep C Review required

The Hep C Review

ED62

1 2 5 10 20 50 80 160

September 2008

59

membership form / renewal / tax invoice 2. Are you a new or existing member?

This is the first time I've applied to become a financial member

5. Separate donations are gratefully accepted by the Council.

Donations of $2 and over are tax deductible.

If you would like to make a separate donation, please record the amount here:

I'm already a financial member and this is a membership renewal

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

I currently receive your magazine and I want to become a financial member

6. If paying by credit card, please provide all information in this section.

I'm not sure - please check your database

Card number:

3. Our membership year begins on 1 March and finishes on the last day of February.

To become a financial member, please tick one membership fee box, below:

Card type

Waged: for people in paid employment

$25

Cardholder signature:

Concession: for people on government benefits

$10

Zero Fee membership: for people in NSW experiencing severe financial hardship (NSW prison inmates)

$0

Individual health or allied professionals

$40

7. Payment, GST and postage instructions

Community-based agency (Management Committee run)

$50

All Council membership fees are GST exempt but for most people, our membership fees are not tax deductible.

Public/private sector agency

$70

NB: Above are Australian rates only. Overseas applicants please contact the office or consult our website for additional surcharge information.

4. Contact with the Council office.

We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office.

I'd like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work for the Council

MasterCard

Expiry date:

Visa

month:

Bankcard

year:

Please print cardholder name:

If paying by cheque or money order, please make payments out to:

Hepatitis C Council of NSW - Membership

Please post payments to Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt?

If you would like a receipt for your payment, please tick the box (right)

9. Declaration - I accept the objects and rules of the Hepatitis C Council of NSW and apply for membership of the Council.

I agree to my personal contact details being held by the Council and used in accordance with the Council's privacy policy.

Signed:

Dated:

If you would like to obtain a copy of our constitution or privacy policy, please contact the office (02 9332 1853) or visit our website: www.hepatitisc.org.au

This section office use only

date received

staff initials

60

www.hepatitisc.org.au

amount received

receipt number

date entered

membership number

info pack sent?