Hep Review 58

The Hep C Review Spring Issue

September 2007

Edition 58

Enhancing uptake of hep C treatment in AOD clinics Launch of several new therapies to drive dramatic growth in hep C drug market Engaging Communities - the 2007 national hep C health promotion conference Your guide to feeling less tired Llama lashes & grumpy old gits Public opinion on NSPs

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editor’s intro

The Health On the Net (HON) Foundation is a non-government organisation, connected to the European Union and World Health Organisation and “internationally known for its pioneering work in the field of health information ethics, notably for the establishment of its code of ethical conduct, the HONcode. HONcode is the oldest and the most used ethical and trustworthy code for medical and health related information available on the internet.”

We are especially proud to have attained this level of accreditation for our website and strive to continue to provide quality services to the people of NSW affected by hep C. Working on Edition 58 has been very enjoyable.

Articles that particularly caught my eye include trainee surgeons and needlesticks (p7), US FDA warnings on Chinese toothpaste (p11), hatching a plan (p12), Engaging Communities (p20), The Last King producer (p35) and All Saints (p36).

I hope you find this edition an interesting read and hope that you will write in to share your opinions or story.

Paul Harvey, Editor

Website survey thanks!

The website review survey has closed and we’d like to thank the large number of people who completed both the online and hard copy survey.

From this great response, we are now able to update our website to ensure we continue to provide accurate information, as well a range of functions to make the site accessible and user friendly.

Keep an eye on the site to see the new improvements soon!!

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Emily Seaman, Information and Resources project officer, HCCNSW.

Hep C Helpline Hep C Helpline staff receive approx 3,000 calls a year with 200 of these coming from the Prisons Hep C Helpline, a free-call line that can be accessed by inmates from all 32 correctional centres across NSW. An out-of-hours recorded information service has been in operation since 2000 and takes an additional calls per year.

The Helpline was started in late 1991. Callers could access a free-phone 1800 support line which was staffed by a network of home based peer volunteers, who had personal experiences of hep C. The home based peer service continued until 1995, when NSW Health approved further funding and we were able to professionalise the Helpline by initiating an in-house service from the office, formalising the volunteer training program and expanding the hours of operation. From this point, the service was provided by a team of trained staff and volunteers. Although the Helpline moved away from being a peer-based service, many of the volunteers were still personally affected by hep C, through friends or family members or through having hep C themselves.

From June 2006 Helpline calls have been taken only by paid staff. This decision came about due to a recognition that volunteers coming in to the Helpline only once per week often found it difficult to maintain the level of knowledge required to meet the increasingly complex needs of clients and that staff have the capacity to handle the volume of calls. Even though the volunteer role has evolved over the years, the Council remains strongly committed to ensuring that communities affected by hep C continue to directly participate in our activities.

Part of this commitment involves the establishment of a 12 month peer support pilot project called HepConnect, which provides a phone-based volunteer peer support service for people living with hep C, their partners and carers, and particularly people who are considering or currently undergoing interferon based treatment. Volunteers share from their personal experiences of living with hep C and undergoing treatment, and provide a unique service that callers are finding very useful.

With the introduction of HepConnect the Helpline team was re-named the Client Services Team in recognition of the broader range of services that are provided to clients, including seeing drop-in clients and managing the email questions answered service in addition to taking Helpline calls and managing the peer support service.

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HCCNSW

Cover image - Peter Allen / Flickr

A

s mentioned in every editor’s intro, it has been a busy few months since the last edition of The Hep C Review. A highlight over this time has been our gaining HONcode accreditation for our website.

Council keyhole

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acknowledgements Calling all members

Hep C Review editor: Paul Harvey Editorial Committee: Tim Baxter Teresa Clonan Megan Gayford Paul Harvey Stuart Loveday Tom Pryce Emily Seaman Thuy Van Hoang

Look inside for your special Membership Page (p44).

Our 2007 membership year began on 1 March - we look forward to continuing to receive your renewals.

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

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) Proof reading: Prue Astill Grant Bannakin Judy Campbell Samantha Edwards Gerard Newham Bill Whelan

Seeking your personal story Personal stories provide a good balance to our information articles.

MARLTON comic: Andrew Marlton

They are written mostly by people with hep C, but can be just as interesting when written by family members or friends. The experience of health care workers would be equally interesting to many readers.

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

The Hepatitis C Council of NSW is an independent, community-based, non-profit, membership organisation.

We are funded by the NSW Health Department. phone: 02 9332 1853

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

fax: 02 9332 1730 email: hccnsw@hepatitisc.org.au website: www.hepatitisc.org.au postal address: PO Box 432 DARLINGHURST NSW 1300 AUSTRALIA

Articles should be between 400800 words.

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 so please send them in.

•

ED

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

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contents News Prexige withdrawn from market and patients told to get liver tests

6

Enhancing uptake of hep C treatment in AOD clinics 6 Rehab services must not be starved of funds

7

Most trainee surgeons fail to report needle-sticks

7

Jack Kevorkian to be paroled

8

From Russia with hep C

8

Hep C considered as an occupational hazard

8

Blues drummer dies

8

Indian President promotes safe syringe use

9

Taliban’s Julaluddin Haqqani dead from hep C

9

Teachers with hepatitis buy fake medical records

9

Ireland’s controversial nurse autonomy plan 10 Hep C spreads among drug users in Iceland 10 US FDA places Idenix’s hep C drug on hold 10 US doctor sued over spread of hep C 11 Biolex raises $30mill for hep C drug studies 11 US FDA warning on Chinese toothpaste 11 Hep C runs rife through the Amazon 11

34

Media watch - All Saints, One moment in time

36

Hello Hep C Helpline - fears of transmission

37

Your guide to feeling less tired

38

Meet the Council

41

My story Chancing it 18 Hep C and me in the Northern Territory

26

A story of HIV and hep C coinfection

30

Heroin, jail and hep C

44

Promotions Hep C bookmarks 19 Llama lashes & grumpy old gits 19 Call for genetic study volunteers

42

HepConnect peer support project

42

HALC legal centre

43

Making sense of hep C research project

43

Online & connected

43

Research updates Many with haemophilia and hep C develop end-stage liver disease

45

Hatching a free-range plan against hep C 12

Impact of heroin availability on patterns of drug use, risk behaviour and HCV incidence in NSW

45

Scientists learning to harness gene control 13

Progression to cirrhosis: an age-dependant process? 46

Downing Street hiding blood scandal facts 13

Public opinion on NSPs

46

Launch of several new therapies will drive dramatic growth in hep C drug market 14

Taribavirin & peg interferon tested for hep C

46

Giaconda announces clinical trial for Hepaconda

47

$100,000 for QLD liver research foundation 14

Does outcome of hep C vary with genotype?

47

New blood test for liver fibrosis approved in UK 14

Coffee linked to less liver cancer

47

Four more years for Kings Cross MSIC trial 15

HCV-infected livers better benefit liver transplant

48

A trio of Aussie hep C award winners 15 Double Bay doc investigation concludes 16

Injection behaviour not sexual contact accounts for couples’ hep C risk

48

Comedian apologises for Pammy hep C joke 16

Hep C and lymphoma link

49

DNA testing for chronic hep B 16

Hep C linked to severe kidney disease

49

Mundine talks hoops and some hard truths 17

Thyroid cancer in chronic hep C patients

49

Goodbye Judith Jones 17

Regular information

Farewell Sue Kippax 17

Council keyhole -

2

Features

Letters

5

Membership news

44

Interferon-based therapy

50

Complementary therapies

51

Support & info services

52

Noticeboard

54

Membership form / renewal / tax invoice

55

NZ Medilab fails to protect patient privacy 12 Cow compound boosts the human immune system 12

Engaging Communities - the 2007 national hep C health promotion conference

20

The C-een and Heard hep C speakers service from the speaker’s viewpoint

22

Opinion - Worrying signs of health in ACT jail

25

Hep C nurse practitioners - a new beginning

33

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The Last King producer recovers from combo

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letters

You’re not ready to let go Hi Annie. I’d like to say how grateful I am to you for telling us your story (I’m not ready to let go, ED57, p22). I think it should be compulsory reading for all health care workers who are involved with giving people prolonged and unpleasant treatments.

Now, I’m not trying to defend us here, because unfortunately I have witnessed the callous and objectifying treatment sometimes dished up in ‘the system’. I think the main problem, for those who do genuinely want to help, is that they just don’t know; they’re not aware, they have no experience of ‘what happens afterwards’. The post-treatment appointment, when good news is given is inevitably a joyous occasion for all, so it’s all too easy to think ’good job done’, pop the front sheet into the SVR file and imagine everything’s fine and dandy.

Your article was very timely: we have just completed a family impact study where we held focus groups to look at the effects of interferon on family life. A huge secondary gain for focus group-ees (not groupies!) was the benefit of being able to talk with fellow survivors.

The group was set for one and a half hours but lasted nearly double! We had such positive feedback from people’s experience that we’re planning to make a post-treatment get together a regular event.

Every cloud has a silver lining, as they say, and mine was the insight I gained and the opportunity to apply it in my work. To this end, we send an info sheet out to our clients a couple of weeks before their treatment finishes, telling them what to expect ‘after’. As well as the practical stuff we talk about the potential for exactly what you describe. This is all very well, but with the best will in the world we still can’t ‘know’, so I think giving people your article to read would ‘tell it from the heart’ and be far more beneficial than an information sheet.

Finally, even though it might not feel like it now, treatment will recede and become ‘past’. There is also good that can come out of bad stuff. I think it’s impossible to go through such an experience and not emerge a changed person. To have endured and survived an experience such as yours inevitably makes you grow as a person. I think that when healing’s done, and you can look back, you’ll find you’re a better person that you were before.

Helen, Central Coast.

Your article also touched a personal chord. I can’t class myself amongst those who don’t know as this was also my story. Many years ago I went through a similar experience. I couldn’t wait for the whole horrible ‘thing’ to be over: the world was going to be a wonderful place and life was going to be all sparkly and lovely. This was not the reality; I felt fearful and alone, had my first encounter with the black dog and became profoundly depressed. It took over a year to become me again. I too was met with the ‘you should be grateful to be alive’ scenario.

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news Prexige withdrawn from Enhancing uptake of hep C market and patients told to treatment in AOD clinics get liver tests AUSTRALIA - The National Centre for HIV AUSTRALIA - Up to 60,000 users of a drug, which caused the deaths of two Australians and two others to undergo liver transplants, have been warned to stop taking it immediately and undergo a liver function blood test.

In August, the Therapeutic Goods Administration (TGA) recalled the drug Prexige, used to treat osteoarthritis. The TGA took less than 24 hours to deregister Prexige and order a recall after it reviewed eight cases where people suffered severe liver damage.

Two of the eight died and two needed liver transplants after using the drug.

Two of the eight cases emerged in March and the other six were revealed in the past six weeks.

“As a result of those case reports we have taken this straight to our drug safety committee who met yesterday ... and they recommended that it immediately be deregistered,” TGA principal medical adviser Rohan Hammett said.

“It’s important that people cease taking the drug immediately and see their doctor to see if they have any liver damage and get advice about what else they should do.”

Prexige was first approved by the TGA in 2004, but has only been in common use since being listed on the Pharmaceutical Benefits Scheme last year. Novartis Pharmaceuticals produces the drug, which is listed under the technical name Lumiracoxib.

Approximately 60,000 people take Lumiracoxib in Australia, which is prescribed for relief of osteoarthritis, post-operative pain, pain related to dental procedures and painful menstruation.

Dr Hammett said the level of severe cases in Australia was extremely low but the chance of liver damage increased the longer a person used the drug.

He said that Australia was the first country to recall Prexige, which is a Cox 2 inhibitor - a non-steroidal anti-inflammatory drug.

NCHECR has sub-contracted the Australasian Society for HIV Medicine (ASHM) to provide workforce development in hep C to medical staff and health professionals involved in the provision of pharmacotherapy treatment, with a view to support the implementation of HCV services in the drug treatment sector.

A steering committee for the project has been convened. The steering committee includes research and clinical experts in both the drug and alcohol and the hepatitis C sectors, representatives from Commonwealth and State government agencies, the Commonwealth Bloodborne Virus and Sexually Transmitted Infections Sub-committee (BBVSS) and community based organisations.

Initial consultations with drug treatment service providers will help promote the project and inform the educational needs of the workforce to assist ASHM with planning workforce development.

An introductory and an advanced level course will be offered to publicly and privately funded opioid pharmacotherapy providers. The curricula will be based on the HCV course currently offered by ASHM to general practitioners and nursing staff as part of the ASHM Viral Hepatitis Education Program.

Existing knowledge and attitudes amongst both practitioners and clients regarding the provision of hepatitis C treatment services and the barriers to service provision and/or access will be surveyed by NCHECR. Models of service delivery will be piloted in several opioid pharmacotherapy sites with a view to enhancing access to hepatitis C treatment and monitoring.

People with inquiries about the withdrawal of Prexige can ring the TGA info line on 1800 004 599 or Novartis Pharmaceuticals on 1800 671 203.

Evaluation of the project will focus on the workforce development program, client satisfaction in relation to the HCV services provided in opioid pharmacotherapy settings, and the impact of service delivery models in terms of predictors of treatment uptake and rates and predictors of treatment outcomes.

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Epidemiology and Clinical Research (NCHECR) has received Commonwealth and State funding to examine models of service delivery that will enhance access to HCV treatment for people on opiate dependency pharmacotherapy.

Abridged from www.smh.com.au (11 August 2007)

Abridged from ASHM News, Vol18, no2 (7 May 2007).

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news Rehab services must not be starved of funds

Most trainee surgeons fail to report needle-sticks

AUSTRALIA - A measure of a government is its behaviour towards the less fortunate in society.

USA - Almost all surgical residents accidentally stick themselves with needles or other sharp medical instruments but most fail to report the injury, increasing their risk of contracting bloodborne diseases from patients, according to a study published Thursday in the New England Journal of Medicine, the New York Times reports.

How its resources are channelled to help the homeless, the addicted, the mentally afflicted and the economically disadvantaged, is the yardstick of compassion.

In times of prosperity such as these, it is too easy to neglect those who have fallen by the wayside.

Which makes all the more disturbing a report in The Age detailing the strain under which Victoria’s alcohol and drug rehabilitation services are trying to operate.

A discussion paper by the Department of Human Services reveals that the services are under pressure on several fronts: increasing rates of binge drinking, a crisis in methadone treatment and a strong rise in young people seeking treatment.

In the past year there has been a 12 per cent increase in young people entering treatment. Despite these facts, there is to be no additional funding in line with the increased strain put on the services. Any improvements are to be made “within existing resources”. This is hardly acceptable.

While it is noted, and is commendable, that the State Government has adopted a drug strategy and is formulating a mental health strategy, all the policy in the world will mean little to the person on the street if funding is insufficient to meet needs. The problem requires greater thinking than merely diverting funds from one area to another, as the Government did in February when it shifted $14 million from heroin treatment to a prevention and treatment program for the drug ice.

Federally, too, there can be reluctance to react. Last month, Canberra rejected a submission from the Alcohol Education and Rehabilitation Foundation for $20 million to boost programs.

For the study, researchers at Georgetown University and Johns Hopkins University questioned 699 physicians who in 2003 were residents at 17 medical centres nationwide. They found that 99 per cent of participants had experienced at least one needle-stick injury by the final year of residency, with an average of eight such injuries per resident.

The study found that 51 per cent of residents did not report the injuries to an employee health service, which is required at some hospitals. Of the residents who reported their injuries, 53 per cent were stuck while working with a patient at high risk for common bloodborne diseases.

The National Institute for Occupational Safety and Health estimates that only two in every 100 health care workers who are stuck while treating people with hep C will develop the infection. The researchers noted that although the risk of disease is low, it would be virtually nonexistent if health care workers reported the injuries and sought treatment immediately.

Being rushed at work was the key reason residents did not report needle-stick injuries. The study found that residents believed reporting their injuries would take too much time, could jeopardize career opportunities and might cause them to lose face among peers.

•

Abridged from www.kaisernetwork.org via HCV Bulletins

These services, obviously, are not huge road or rail projects. They exist to help the people too often forgotten.

•

Abridged from www.theage.com.au (6 June 2007) via www.dailydose.net

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news Jack Kevorkian to be paroled

Hep C considered as an occupational hazard

USA - Dr Jack Kevorkian, the man known as Dr Death, is to be released from a Michigan prison. He has spent eight years inside for participating in an assisted suicide that he had videotaped and broadcast on television.

USA - The Pennsylvania state House Labor Relations Committee approved a bill yesterday that would classify hep C as an occupational disease for certain law-enforcement jobs.

Kevorkian, who turns 79 this year, is in seriously declining health, suffering from hep C, which he contracted while serving in Vietnam, Kevorkian’s attorney, Mayer Morganroth said.

Representative, James Casorio Jr, introduced legislation that would presume officers with hep C who work for the state Fish and Boat Commission, the Department of Natural Resources and the Port Authority contracted the disease on the job.

“He’s not in the best shape, but he can function,’’ Morganroth said.

The law would provide automatic workers compensation to officers with the disease.

Morganroth said Kevorkian will concentrate on educating the public about his position on assisted suicide and will concentrate on “writing, doing his painting and composing music.’’

•

•

It seems odd that fishing inspectors, park rangers and port workers should be seen as having any increased risk of contracting hep C. ED

Abridged from www.abcnews.go.com (25 May 2007).

From Russia with hep C

Blues drummer dies

RUSSIA - A young Chechen who tried to negotiate the release of hostages during the Moscow theatre siege five years ago, has said he was drugged by the Russian security service so that it could claim to have caught one of the perpetrators.

USA - Blues drummer “Uncle” John Turner, who played with guitarist Johnny Winter, died recently of complications related to hep C, said family friend Mark Murray. He was 62.

Zaur Talkhigov, 30, is half way through his eightand-a-half-year sentence. He vehemently rejects claims by the Federal Security Service that he was an accomplice of the Chechen terrorists who took more than 800 theatre-goers hostage.

Independent observers who attended his trial insist that the charges were trumped up and his lawyer is taking his case to the European Court of Human Rights in Strasbourg.

According to Talkhigov, he has caught hep C, apparently after Federal Security Service doctors used an infected needle on him.

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Abridged from www.centralpennbusiness.com (20 June 2007) via HCV bulletins

Abridged from www.timesonline.co.uk (15 July 2007) via HCV Bulletins

Mr Turner performed at Woodstock in 1969 with Winter. He split with Winter in 1970 and joined Krackerjack, which featured the late Stevie Ray Vaughan on guitar.

“Bass player Tommy Shannon gave John the nickname “Uncle” because of his willingness to drive his bandmates to gigs and take care of business affairs,” said Murray.

Turner played with artists including B.B. King, Jimi Hendrix, Freddie King, Muddy Waters and Lightnin’ Hopkins.

He grew up in Port Arthur, where he started his musical career on guitar before switching to bass. He began playing drums in a band called the Nightlights.

•

Abridged from www.boston.com/news/globe via http://news.ask.com

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news Indian President promotes safe syringe use INDIA - Unsafe syringe use, one of India’s biggest health challenges, has attracted the attention of country’s President, A P J Abdul Kalam, who has decided to endorse a safe syringe use campaign and help promote a short film about the magnitude of the menace.

The film, presently being made, will show exactly how the syringes are reused, poignant stories of patients suffering from bloodborne illnesses after being injected with infected syringes and the benefits of the auto-disable syringe (ADS).

ADS eliminates the risk of infection because it cannot be re-used. It has a built-in mechanism designed to give a single dose of medicine after which the syringe is permanently locked or disabled.

Such a mechanism prevents the re-use of contaminated syringes and needles and eliminates unauthorised packaging, re-sale or re-use of the equipment.

According to a health ministry study, three out of every five injections in India are unsafe.

While glass syringes are generally not sterilised, plastic disposable ones are reused indiscriminately.

According to the World Health Organisation, 63 per cent of injections in India are unsafe. Of this, nearly one-third carry a risk of transmitting bloodborne viruses.

While 67 per cent of injections at government health facilities are unsafe, 60 per cent were unsafe in private clinics and hospitals.

•

Abridged from http:// timesofindia.indiatimes.com (26 April 2007) Also see ED39, p16 and ED53, p15. ED

Taliban’s Jalaluddin Haqqani dead from hep C AFGHANISTAN - An unconfirmed report by Bakhtar News Agency has surfaced indicating legendary Mujahadeen commander and Taliban era Minister Jalaluddin Haqqani has died. According to a source that refused to be named, Haqqani ‘died from hep C while under medical care in Abu Dhabi, United Arab Emirates.’

Teachers with hepatitis buy fake medical records EGYPT - Egyptian teachers who have hepatitis are buying fake medical records from corrupt officials so they can work in Kuwait, it has been claimed.

The Kuwait government is planning to tighten up on work permit procedures after 48 Egyptian teachers were thrown out of the country after testing positive for hepatitis.

So far there has been no official proclamation of his death from his sons Sirajuddin and Nasiruddin or the Taliban in Afghanistan.

The report must be treated as pure speculation until further information is available.

“Teachers wanting to work in Kuwait have to have a medical check-up including tests for hepatitis,” an Egyptian teacher said.

“But they simply have the results changed on their medical report by bribing officials.”

His legacy of fending off the Soviet’s largest offensive of the Soviet-Afghan war, Operational Magistral, is remembered fondly by many of Afghanistan’s eastern residents. His high public regards and ‘war hero’ status helped ensure his safety over the last five years as Coalition forces vehemently hunted him down.

There are more than 4,000 Egyptian teachers in Kuwait and before they receive work permits they have to undergo a medical examination, which includes tests for hepatitis, in Egypt. The results of those tests are then passed on to the Kuwait Embassy in Cairo.

Haqqani suffered numerous injuries on the battlefield over the years and according to the Pajhwok report, a 2004 Coalition air strike severely wounded him.

It’s likely that the surgery and medical operations needed to treat him after this incident may have used a tainted blood transfusion.

Although Haqqani has an Emirati wife, his body will likely be returned for burial in Afghanistan or North Waziristan if indeed he has perished.

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Abridged from www.afgha. com (15 June 2007) via HCV Bulletins

The Ministry of Education fired the 48 teachers on June 19 after it was revealed they had failed hepatitis tests last March, according to the Ministry of Health. But they stayed in their jobs until the end of the school year before their work permits were revoked.

•

Abridged from www. kuwaittimes.net (24 June 2007) via HCV Bulletins.

An odd news piece that is out of kilter with current hep C awareness. Don’t the Kuwait authorities know that hep C positive teachers pose no transmission risk to their students? Or perhaps they apply this sort of blanket ban on all foreign workers? ED

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news Ireland’s controversial nurse autonomy plan IRELAND - Dublin GPs involved in treating substance abuse have met to discuss Health & Safety Executive (HSE) plans to give clinical nurse specialists autonomy to refer hep C patients on to other services.

A recent advertisement for a clinical nurse specialist (CNS) for Dublin-Mid Leinster stated that the CNS would have the autonomy to assess, plan, deliver and evaluate care for patients.

It is understood that around 20 GPs met in Dublin to discuss the proposal, and that it was agreed to seek clarification on the proposal from the HSE as soon as possible.

GPs at the meeting are understood to have expressed medico-legal fears over the potential dilution of clinical responsibility to the patient as a result of CNSs doing work that GPs are contracted to do.

It is thought that the meeting decided to request that the Irish Medical Organisation get a legal opinion on the drug service GPs’ contractual responsibilities; that GPs were fully meeting these responsibilities; and to see if two HSE contracts could exist for the same work.

Hep C spreads among drug users in Iceland

US FDA places Idenix’s hep C drug on hold

ICELAND - During the last ten years 636 individuals have been infected by hep C. Most of the cases involve drug users who share needles. Doctors say this is serious news and that health authorities should take immediate action.

USA - The FDA’s decision to place Idenix Pharmaceuticals’ program developing valopicitabine for treating hep C on clinical hold was based on the drug’s overall riskbenefit profile, the company said.

“About 70 per cent of those who inject drugs are infected. That is a very high per cent that can be traced back to individuals using contaminated needles and needles that others have used,” Sigurdur Thorsteinsson, a senior physician at the Infectious Disease Ward at the National Hospital told Fréttabladid.

Thorsteinsson said that health authorities should consider providing easier access to sterile needles for substance abusers.

Doctors fear that the high number of hep C infections is an indication of an upcoming HIV epidemic; recently three substance abusers who had shared needles were diagnosed as HIV positive. In other countries an HIV epidemic is known to have followed a spread of hep C. •

Valopicitabine (mentioned in ED57, p21) is an investigational nucleoside polymerase inhibitor.

Last month Idenix announced results from a Phase II study showing that combination therapy consisting of valopicitabine, pegylated interferon and ribavirin reduced hepatitis C viral load in 72 per cent of patients.

The FDA conducted an independent risk-benefit analysis based on the drug’s entire clinical program and concluded that the benefits did not outweigh the risk of gastrointestinal toxicity.

•

Abridged from http://fdanews. com via HCV Bulletins

Abridged from Iceland Review (17 June 2007) via www. dailydose.net

Treatment services GP, Dr Pat Troy, told IMN: “We need these hep C nurses but let’s get it right.... We want these hep C nurses and want them to work alongside us but for each of us to know our role.”

•

Abridged from www. irishmedicalnews.ie via HCV Bulletins.

See article about Australian HCV Clinical Nurse Consultants, page 33. ED

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news US doctor sued over spread of hep C USA - Two more people have contracted hepatitis C after receiving intravenous anaesthesia from a doctor in New York who is under investigation.

Dr Brian Goldweber, 64, is accused of spreading the disease by failing to follow proper infection control protocols, The New York Post reported Sunday.

A 45-year-old woman with a prominent corporate post filed a lawsuit last week against Goldweber and three other doctors at the Manhattan practice, where she underwent a colonoscopy in 2004.

She filed her suit as Jane Doe due to what she called the stigma, discrimination and embarrassment of a hep C infection, which typically affects drug users.

Another woman has notified the city Health Department after contracting hepatitis C after an outpatient procedure. That notification brings the number of possible victims to at least five, the Post said.

•

Abridged from www. imedinews.ge (25 June 2007) via HCV Bulletins

Biolex raises AUD$38 mill for hep C drug studies

Hep C runs rife through the Amazon

USA - Biolex Therapeutics, a privately held biopharmaceutical company, announced today the closing of an AUD$30 million financing share offer.

BRAZIL - The Indians of the Javari Valley in the Brazilian Amazon have warned that rates of hepatitis in their communities are spiralling out of control, and that uncontacted tribes in the area are in grave danger.

The financing was oversubscribed and included strong participation from existing shareholders. The funds will be used primarily to advance Biolex’s lead drug candidate Locteron into Phase-3 clinical trial development in hep C (see ED57, p21), and to advance their other drug candidates.

A recent study of 306 Indians revealed that 56 per cent were carrying the hepatitis B virus; the level considered ‘acceptable’ by the World Health Organisation is two per cent. A staggering 85 per cent of the Indians had contact with the hepatitis A virus, and 25 per cent were carrying hep C.

•

The Javari Valley is the second largest indigenous territory in Brazil. It is home to the Kanamari, Kulina, Marubo, Matsés, Matis, Korubo and Tsohom Djapá tribes, and at least six uncontacted tribes are known to live in the remote region near the Peruvian border.

Abridged from www. hcvadvocate.org

US FDA warning on Chinese toothpaste USA - The FDA is warning consumers to throw out any Chinese toothpaste after it found a component of antifreeze in several products.

Because diethylene glycol (DEG) is not always listed in the ingredients on the package, the FDA says people should discard any imported from China.

There have been deaths in several countries from DEG-contaminated products like cough syrup and the FDA is concerned about chronic exposure to DEG, particularly to vulnerable populations like children and people with kidney or liver disease.

•

Abridged from http://firstwatch. jwatch.org via www. hcvadvocate.org

A local Indian cultural organisation has said in a letter to the Brazilian government, ‘The situation of the isolated Indians in this region is serious. Illegal and predatory invasions aggravate the health situation and make these peoples even more vulnerable. These factors threaten their physical and cultural survival, contravening Article 231 of the Federal Constitution, which determines that the State will protect customs, languages, and traditionally occupied territories.’

The Indians say that the Brazilian authorities responsible for indigenous health care have taken insufficient action to combat the crisis. Indian leaders have been speaking out about the situation for fifteen years, but the crisis has worsened in the last five.

•

Abridged from www.survivalinternational.org

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news NZ Medlab fails Cow compound to protect patient boosts the privacy human immune system NEW ZEALAND - Medlab South, one of the nation’s largest providers of diagnostic services, is under fire for failing to act over repeated warnings it was sending sensitive patient information to the wrong person.

More than 40 patients suffering a range of illnesses including hep C, alcoholism and depression have had their names, addresses, test results and further details of their conditions faxed to a Christchurch woman.

Both the Privacy Commissioner and the Health and Disability Commissioner have expressed serious concerns.

The woman, who did not want to be named, said she had repeatedly told Medlab South about its error but the faxes kept coming.

“One time I came home and the kitchen floor was covered in them,” she said.

The Christchurch woman said she had been receiving the faxes for 14 months and had been visited by Medlab staff three times to retrieve documents.

In March, Medlab gave the woman a bouquet of flowers and promised the problem would end. Chief executive Brian Willcox said the company believed it came from a dialling error.

The problem, which he believed occurred because of similarities between the woman’s number and the company’s Nelson branch number, had been fixed.

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•

Abridged from www.stuff.co.nz (7 July 2007) via HCV Bulletins

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www.hepatitisc.org.au

UK - A compound that boosts the immune system - discovered in the former Soviet Union - has caught the imagination of Australia’s best-known medical researcher.

Ian Frazer of the University of Queensland, who invented Gardasil, the recently introduced vaccine against cervical cancer, has turned his scientific attention to “oglufanide”.

Russian scientists originally extracted oglufanide from cows’ thymus glands, to treat viral infections. It is a simple molecule, a dipeptide, which Professor Frazer and his Australian colleagues have produced synthetically for clinical trials. He believes it will prime patients’ immune defences, enabling them not only to fight off viruses such as flu and hep C but also to resist some cancers.

“Oglufanide is very safe,” says Frazer, who is chief scientist of Implicit Bioscience, a Brisbane company set up to develop the compound outside Russia.

“Most other drugs that modulate the immune system have sideeffects, but this one doesn’t. It also has a very broad spectrum of activity and is impervious to viral mutation.”

•

Abridged from The Financial Times - www.ft.com

Hatching a free-range plan against hep C SCOTLAND - Researchers have managed to rear a flock of transgenic hens capable of producing eggs that express remarkably high levels of a protein used for the treatment of hep C, potentially creating a cheaper and more efficient rival to traditional bio-manufacturing techniques.

By tweaking a proprietary region of DNA, researchers were able to dramatically increase the efficiency of protein production in the transgenic-hen based system, upping the quantity of interferon alpha-2a expressed in each egg from four milligrams to forty milligrams.

“Based on these expression levels, each egg contains enough alpha interferon to treat up to 15 patients suffering from hep C for a full year,” said Elizabeth Elliot, senior project leader at Viragen (Scotland) Ltd. According to researchers at the Roslin Institute, the team expects to be able to maintain this elevated level of protein production, and perhaps even improve on it for both interferon alpha-2a and other protein drugs.

Commercialising would obviously involve numerous flocks of hens which would be put to work laying enough eggs to satisfy the demand for the particular therapeutic proteins. Elliot explained that this bio-manufacturing could be achieved either through drug companies having their own flocks of transgenic hens, or Viragen offering a kind of contract-laying service to commercial partners.

•

Abridged from www. biopharma-reporter.com/ (09 May 2007) via ADCA Update

21/08/2007 2:12:02 PM

news Scientists learning to harness gene control

Downing Street hiding blood scandal facts

EUROPE/USA - Using a new experimental technology, researchers have lowered cholesterol levels in mice by 35 per cent and stopped hepatitis C virus infecting cells. Although the work is still at a very early stage, some experts believe it could herald big changes in drug development.

UK - An independent public inquiry into how thousands of people with haemophilia contracted HIV or hep C from contaminated blood, discovered last night that Downing Street [Britain’s equivalent to the White House] is withholding crucial information about how hundreds of relevant documents were shredded.

The mechanism involves tiny bits of RNA which interfere with the translation of genetic instructions.

Like DNA, RNA carries genetic information in the form of chemical sequences.

These microRNAs (miRNAs) are able to “silence” genes by locking onto another type of RNA molecule essential to the translation process. Messenger RNA carries the instructions written in genes to the proteinmaking machinery within cells.

When it is blocked by miRNA, the instructions are never read and the protein never made. In this way, miRNAs “switch off” genes. The mechanism is one way that 90 per cent of genes in a cell are silenced at any given time. Without this kind of braking system, genes would be in continual overdrive.

Scientists in Europe and the US, writing in the journal Nature outlined new findings shedding light on how the miRNA mechanism works. A Danish pharmaceutical company was also reported to have used the technology therapeutically for the first time, in mice.

Researchers at Santaris Pharma in Horsholm set about inhibiting miRNA using short, single stranded RNA molecules. By causing the molecules to bind with miRNA in the liver, they lowered cholesterol levels in the mice by 35 per cent. Laboratory tests also showed that blocking a particular miRNA protected the liver against infection by hepatitis C. The work, highlighted in New Scientist magazine, was praised by American expert Dr Graham Brock, director of drug discovery at Ordway Research Institute in Albany, New York.

•

Abridged from www.channel4.com/news (16 May 2007)

More than 1,700 patients died and many more are now terminally ill as a result of one of the biggest medical disasters of recent times, when people with haemophilia were given infected blood clotting products during the late 1970s and early 1980s.

The products came from American prisoners who were allowed to sell their blood even though there were fears about the risks of contamination. It has since emerged that many of the files detailing the scandal were shredded by civil servants in the 1990s.

At the upcoming second hearing of the contaminated blood inquiry, chaired by the former British SolicitorGeneral, Lord Archer of Sandwell, Downing Street representatives will be asked why the results of an internal inquiry into the destruction of crucial files are being withheld.

Jenny Willott, Liberal Democrat Parliament member for Cardiff Central, has discovered that Downing Street is holding back the report, carried out by the Department of Health in 2000, when Alan Milburn was Health Secretary. Some of the destroyed documents detailed meetings between the blood transfusion service, health boards, government officials and consultants during the 1970s and 1980s.

The records also contained information on when precisely the government became aware of the risks from imported blood and what measures were taken to warn patients.

The Haemophilia Society said Saturday night that Downing Street’s decision was “incomprehensible, given the public interest”. In 1989, the society brought legal action on behalf of thousands of patients who had become infected with HIV after being given the clotting product Factor 8.

However, it then transpired that hundreds of documents relating to the case were shredded, allegedly by accident, by junior civil servants.

•

Abridged from http://freeinternetpress.com

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news Launch of several new therapies will drive dramatic growth in hep C drug market USA - Decision Resources, one of the world’s leading research and advisory firms for pharmaceutical and healthcare issues, predicts that the drug market to treat hep C will experience dramatic growth through 2011 as the launch of several novel therapies, beginning in 2009, significantly alters the standard of care.

However, the market will contract after 2011 as the treatment-eligible pool of people with hep C declines in the United States, France, Germany, Italy, Spain, the United Kingdom and Japan.

The new Pharmacor report Emerging Hepatitis C Virus Therapies finds that the most highly anticipated drugs in development are the hep C virus protease and polymerase inhibitors. The uptake of protease inhibitors, such as Telaprevir (Vertex/Johnson & Johnson/Mitsubishi), Boceprevir (Schering-Plough) and ITMN-191 (InterMune/Roche) will be driven by their impressive efficacy rates, safety, and oral formulation.

Furthermore, leading gastroenterologists and hepatologists believe that polymerase inhibitors such as valopicitabine (Idenix/Novartis), HCV 796 (Wyeth/ ViroPharma), R1626 (Roche), A-837093 (Abbott) and MK 0608 (Merck) will also drive significant growth in the market to treat the hep C. •

Abridged from www.prnewswire.com via www. hcvadvocate.org

$100,000 for QLD liver research foundation AUSTRALIA - The Queensland Government is investing $100,000 to support Australia’s first national organisation dedicated to liver research and education, QLD Health Minister Stephen Robertson said recently.

Mr Robertson said today the one-off grant would provide vital seed funding for the newly-established and Brisbane-based Australian Liver Foundation.

“Queensland has a proud history in liver research and its clinical applications dating back 40 years, including at the Royal Brisbane and Women’s Hospital and the Queensland Liver Transplant Service that was developed in 1985 and based at Princess Alexandra Hospital and the Royal Children’s Hospital,” he said.

“Until now, Australia has never had a national liver foundation despite the fact two million Australians are, or have been, affected by liver disease.

Mr Robertson said the Australian Liver Foundation will raise funds for urgently-needed scholarships, fellowships, research and public education into liver disease.

“Funds will be distributed nationally to research institutions, universities, hospitals and other appropriate organisations for projects aimed at producing significant outcomes of benefit to the community,” he said.

Mr Robertson encouraged the Commonwealth, other States and territories and the private sector to also provide funding to support this important foundation and its work.

•

Abridged from an Australian Healthcare Association press release, 04 July 2007.

New blood test for liver fibrosis approved in UK UK - A new blood test that detects and monitors liver damage has now received regulatory approval to be used in the UK. The ‘Enhanced Liver Fibrosis Test’ (ELF), produced by IQur, a biotech company in the field of liver disease, detects liver problems without the need for invasive biopsies.

“This is a massive shift in the area of liver disease,’’ said Professor William Rosenberg, one of the pioneers behind the test. “Liver disease is one of the most common causes of death in the UK and anything that we can do to stem the rise has huge significance for patients and those treating the disease.’’

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The new test is available through GP surgeries, health clinics and hospitals. The analysis of samples is undertaken by iQur’s specialist diagnostic service, and the test can be repeated at appropriate intervals to monitor disease progression and response to therapy.

ELF test has been developed by iQur in association with the University of Southampton and Siemens Medical Solutions in the US. •

Abridged from www.mlwmagazine.com via www hepatitis-central.com (11 July 2007).

www.hepatitisc.org.au

21/08/2007 2:12:02 PM

news Four more years for Kings Cross MSIC trial

A trio of Aussie hep C award winners

AUSTRALIA - The Medically Supervised Injecting Centre (MSIC) in Kings Cross will be allowed to remain open for four more years - but may be shut down if client visits decline by more than a quarter.

AUSTRALIA - Audrey Lamb, was recognised recently with an Medal of the Order of Australia for “service to public health and to the community, particularly through the Hepatitis C Council of NSW.”

The Health Minister, Reba Meagher, told Parliament in early June she would introduce legislation to extend the trial of the centre until October 2011.

Audrey was instrumental in the setting up in Nov 1991 of a patient support group called the Hepatitis C Support Group (later the Australian Hepatitis C Support group, then the Hepatitis C Council of NSW).

She was the Group’s first President and her strong leadership abilities, interpersonal, organisational and communication skills and empathy for others set the group on a very sound path in the early years.

It is the third extension for the trial - two of those extensions have come shortly after an election win.

The injecting centre was set up by the former premier, Bob Carr, in 2001 in an attempt to halt drug use in public places and stop deaths by overdose.

Unexpected in Ms Meagher’s announcement was the provision that if the number of people attending the centre fell “below 75 per cent of current daily levels (208 clients a day), a formal review will be triggered into the economic viability and need for the centre”.

The medical director of the centre, Ingrid Van Beek, and the licensing operator, the executive director of Uniting Care, Harry Herbert, welcomed the Government’s decision to extend the centre.

Dr Van Beek said lives had been saved by the centre, with more than 2,100 drug overdoses occurring there without death or serious brain injury since its inception.

“There’s no doubt that if some of those cases had occurred in less safe [situations] that some of those cases would have resulted in death,” Dr Van Beek said.

Over six years, 10,000 drug users have used the centre - mostly for injecting heroin - with about six per cent now using it for methamphetamine injection including ice. Ms Meagher said there was no consideration of establishing an injecting centre in any other part of Sydney, since Kings Cross, with its sex workers, had its own peculiar drug problems.

•

Abridged from the Sydney Morning Herald, 8 June 2007.

Conference update 15th National Symposium on Heps B & C, St Vincents Hospital, Melbourne, 17 Nov 2007.

6th Australasian Conference on Viral Hepatitis, Brisbane Convention Centre, 20-22 Oct 2008.

Through her work, Audrey laid the very strong foundations that led to developments to address both physiological and psychosocial aspects of this epidemic from a community perspective both at a local and national level.

Two inaugural winners of the Hepatitis Australia Health Promotion Awards were announced at the Hepatitis C Health Promotion Conference in Melbourne on 5 June 2007.

The Outstanding Service to the Hepatitis C Sector was presented to Paul Harvey of the Hepatitis C Council of NSW in recognition of outstanding individual service.

Paul has been a leading light in the hepatitis C community and health sector since 1993. He started working on behalf of the communities affected by hep C in 1993, initially serving as a volunteer with the Hepatitis C Council of NSW. He was elected to the Council’s Management Committee, and served as its President from December 1994 to May 1995.

Paul applied for paid work and was appointed to the position of Senior Projects Officer in May 1995. He was appointed to the new position of Coordinator – Information and Resources in June 2002 and continues to serve in this role.

The Excellence in Hepatitis C Health Promotion Award was presented to the Picnics in the Park project in recognition of project excellence. This project is a partnership between Hepatitis Council of Queensland, Queensland Injectors Health Network (QuIHN) and Brisbane Youth Service.

A truly excellent collaborative health promotion initiative, this series of picnic events attracted large numbers of people with hepatitis C and served to engender strong community development and awareness.

•

HCCNSW

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news Double Bay doc investigation concludes AUSTRALIA - NSW Health in early July advised that the investigation into possible patient-to-patient transmission of hep C involving three patients at an Eastern Suburbs GP clinic has concluded.

Professor Mark Ferson, Director of Public Health for South Eastern Sydney and Illawarra Area Health Service said that the spread of hep C between the patients most probably occurred as a result of inadequate infection control practices at the clinic, leading to contamination of the work area with microscopic drops of blood.

“Despite this potential for bloodto-blood contact, there has been no evidence of spread of the other major bloodborne viruses that cause hepatitis B or HIV,” Professor Ferson said.

“Dr Hameiri has cooperated fully with the investigation. He closed the clinic for a period so that infection control procedures could be upgraded. The clinic was inspected prior to its re-opening, and the assessment showed that the infection control knowledge and practice of clinic staff was up to standard,” Professor Ferson said.

The investigation follows the diagnosis of hepatitis C in three patients who visited the clinic for vitamin or mineral injections (see ED57, p16).

NSW Health director of communicable diseases Dr Jeremy McAnulty said public health officers had tested more than 150 patients thought to be at possible risk, during the course of the investigation.

•

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Abridged from NSW Health press release, 4 July 2007.

Comedian apologises for Pammy hep C joke AUSTRALIA - Comedian Peter Helliar has apologised for making light of hep C with a joke branded “cheap and cruel”.

Hepatitis Australia said it was offended by an on-air witticism in which Helliar joked about giving hep C to Pamela Anderson for her 40th birthday.

In a segment of the Sunday night comedy show Rove, the comedian asked what would be the best present for the former Baywatch star, who has everything.

“Hepatitis, oh wait, she already got that last year,” Helliar said on the program.

Hepatitis Australia chief executive Helen Tyrrell said the “irresponsible” comment was a cruel and discriminatory attempt at humour.

“Many of the 260,000 Australians affected by hepatitis C already experience stigma and discrimination on a regular basis, and ignorant ‘comedy’ like this only adds to the pain,” Ms Tyrrell said.

But Helliar today said he did not mean to cause offence.

“I realise hepatitis is a disease affecting many Australians,” he said.

DNA testing for chronic hep B AUSTRALIA - The Medical Services Advisory Committee has approved public funding for HBV DNA testing for chronic hepatitis B. This has been given final approval by the Minister for Health and Ageing, the Hon Tony Abbott.

MSAC considered the safety, effectiveness and cost effectiveness of the use of hepatitis B assays in the pre-treatment assessment and in the monitoring of patients with chronic hepatitis B. It found that there is sufficient evidence of the safety, effectiveness and cost effectiveness of hepatitis B assay in the pre-treatment and in the monitoring of patients with chronic hepatitis B. MSAC recommended that the number of hepatitis B assays for pre-treatment assessment or for the monitoring of patients with chronic hepatitis B who are not on antiviral therapy be restricted to one assay in a twelve month period, and for patients on antiviral therapy the number of assays be restricted to four assays in a twelve month period.

The Department will now work with the medical profession to implement this decision through appropriate changes to the Medicare Benefits Schedule.

•

Abridged from Commonwealth Department of Health & Aging correspondence.

“The joke ... was not intended to offend those living with hepatitis and if any offence was caused, I sincerely apologise.”

•

Abridged from www.theage. com.au (03 July 2007) via HCV Bulletins

www.hepatitisc.org.au

21/08/2007 2:12:02 PM

news Mundine talks hoops and some hard truths AUSTRALIA - Always calling a spade a spade, world champion boxer Anthony Mundine was in Darwin recently lending his support for the Hoops 4 Health (H4H) campaign to raise awareness of hep C. In the Top End (Northern Territory) for two days to market the important health issue to youngsters, the outspoken activist and part-time sportsman drove home the message of healthy living and eating.

Always a vibrant spokesman for the Indigenous cause, Mundine successfully traded a profitable career in rugby league for the tough life of professional boxing and has become an Australian sporting ornament and a nononsense character.

“I just set it straight ... the truth is like a rock, you throw it into a pack of dogs and they start barking.

That’s how it is,” Mundine said.

His involvement in the H4H campaign, which culminated in a clash between the Maningrida All-Stars and Under-18 team the D-Livers on Friday, accentuated his tirelessness in bettering the health of Aboriginal people.

Goodbye Judith Jones

Farewell Sue Kippax

AUSTRALIA - After decades of passionate, sustained and acclaimed work in the areas of HIV and hep C prevention, Judith Jones has retired from the Australian Research Centre in Sex, Health and Society (ARCSHS) and the health workforce.

Australia - We say farewell to Professor Sue Kippax who retired in August from her long-held position as Director of the National Centre in HIV Social Research at the University of NSW (NCHSR).

Judith’s first stint at ARCSHS was in 1993, after years of work as a sexuality educator at both Family Planning Victoria and the Social Biology Resources Centre (SBRC).

This involvement launched 25 years of distinguished contribution to the cause of HIV and hep C prevention.

In her retirement Judith leaves a substantial legacy: she is responsible for the production of a vast range of educational resources on bloodborne viruses, mostly recently the National Hepatitis C Resource Manual.

She has been a key link for the diverse information and support networks involving bloodborne viruses. She will be missed by the ARCSHS team and the broader community of her peers.

•

Abridged from ARCSHS eNewsletter, July 2007

Having joined NCHSR as Deputy Director in 1990 and serving as Director since 1994, Professor Kippax has inspired and led the staff at NCHSR. They have carried out ground breaking social research which informed the initiatives that helped make Australia a world leader in responses to the HIV/ AIDS epidemic.

We appreciate so very much and thank Sue for the direction and leadership she showed in expanding the work of NCHSR into the hepatitis C area when the Centre was not provided with additional funding to do so.

Sue additionally served as a member of our Council’s Medical and Research Advisory Panel since December 1997.

We wish Sue happiness, peace and a well deserved rest in what we trust will be an enjoyable and productive retirement.

•

HCCNSW

Top-End basketball great and founder of the H4H campaign, Timmy Duggan along with Mundine have worked to minimise and control the effects of hep C amongst their people through the efforts of the campaign.

•

Abridged from the National Indigenous Times (19 April 2007).

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my story

Chancing it M

y name is Ben. I am 33 years old and I remember contracting hep C in 1994 on my 21st birthday!

I know this as I was in prison on remand at the time.

My friend got a gram of heroin through on a visit. At the time, I was overjoyed to get stoned and put my misery out of mind for a few hours.

At this stage, hep C was still known as “non A, non B” and there was minimal amount known about it. It was still believed by many that the common mosquito could transfer the disease. Also anyone that had hep C was loathe to admit it.

Interferon was new and I had spoken to a nurse who’d undertaken the treatment and beaten the disease. As I recall the success rate was about one in five. I wasn’t interested as being young and stupid, invincibility fitted in well with me.

I was released in 1997 having served three years of a seven year sentence for armed robbery and burglaries done in desperation to support an $800 a day smack habit. Over the next eight years I spent about four in society. I binged on alcohol, used speed and did all the things that someone with hep C should not have been doing.

I felt no pain in the liver or abdominal area and my liver function tests were fine.

To this day I’m not sure how I contracted it again but I’m guessing that a spoon being shared was the culprit.

(Along with my own stupidity and ignorance.)

I wasn’t as lucky this time. Within one month I was admitted to hospital with severe jaundice and my liver was severely inflamed. My system was flushed with a saline solution and I was very sick for some time.

It is eighteen months now since I re-contracted hep C. Every liver function test result has been high. I spend days where I have absolutely no energy and minimal interest in everyday life. My partner of six years has finally had enough of my self-pity and threatened to leave. Only now is the time I have decided to get treatment even though it could be too late.

I was lucky the first time. This second time, hep C has damaged my liver irreparably and very quickly.

My advice to all young people with hep C is not to ignore it as I did. If you are lucky as I was and you can beat it either with treatment or otherwise, treat this as a God-send because the second time around could be much more severe.

Ben, NSW For information about long it takes, generally, for hep C to effect people, see Illness Outcomes Factsheet at www.hepatitisc.org.au/quickref/ factsheet.html There is also a booklet about how to predict illness outcome in individual cases. See I Have Hep C: what could happen to me at www.hepatitisc.org.au/ resources/inforesources.html

Image - Tammy B / flickr

Later I served six months in Goulburn Prison in 2005 and nearing the end of this, decided to get a PCR blood test. I screened negative to hep C and was shocked but naturally thrilled. I questioned prison medical staff and was informed that I was very lucky.

I was told many times that this was very rare and to count myself extremely fortunate.

Once again I was released and on my merry way. I was careful not to use anyone else’s syringes. Three months later I tested positive to hep C and realised that although I had been careful, I hadn’t been careful enough.

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www.hepatitisc.org.au

21/08/2007 2:12:03 PM

promotions

hep C

Llama lashes & bookmarks grumpy old O gits ur hep C bookmarks (below) have proved a great way to promote better hep C awareness within the general community.

Close to 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 with further distributing the bookmarks? Ideas include..

• Taking them to doctors’ surgeries in your area.

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

• Taking them to your local community centre.

If you are able to assist on a local level, we can supply as many bookmarks as you need. Just go to our website and download one of our resources order forms.

•

HCCNSW

T

he radio play is something of a neglected artform in the Twenty-first Century. The weblog, or blog debate on its merits as art aside - could probably stand to be a bit more neglected. Last year though, the BBC brought the two together to make a very effective and unusual documentary about living with hep C. “Don’t forget there are quite a few pillocks on the planet, some of whom you need to be rude to!”

Devised by Anne Edyvean and Jonathan Myerson, Llama Lashes and Grumpy Old Gits takes verbatim extracts from real blogs to tell the story of how isolated individuals found each other online, and how they laughed and raged and cried together through the highs and lows of treatment for hep C. “Well, hair continues to fall out, but I finally have llama lashes!”

The results are fascinating. Those who tell their stories include a gay bell-ringer, a beer-loving engineer, a Canadian healthcare worker and a Muslim family man, among dozens of others.

“It is not a dream – this monday I have finally done the last injection, very smoothly, followed by a chocolate caramel bar!”

It’s also very funny as well as being moving. Judicious use of music from Jeff Buckley to Fleetwood Mac, helps to add texture to the voices that tell the stories, as bloggers talk about how they contracted hep C, share how they deal with self-injection, wait for test results and wrestle with side-effects.

Where can I hear it?

The play was originally streamed from the BBC’s Radio Four website, but is unfortunately no longer available there. However, it can be downloaded from www.theboltons.plus.com/Llama_Lashes.mp3 or listened to online at http://blog.myspace.com/index. cfm?fuseaction=blog.view&friendID=171492849&blo gID=255326741 •

Abridged from Community News No36, June 2007

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feature

Engaging our comm

the 2007 national hep C health promot

Affected communities, health care workers and researchers came together to explore how people livi and the knowledge and skills of the hep C workforce improved. Magdalena Harris provides an overvie

I

would like to thank Hepatitis Australia for this fantastic and provocative conference (Melbourne, 5-6 June, 2007) which brought together such a wide range of perspectives. Affected communities, health care workers and researchers have all come together to explore how we can empower those living with hep C as well as improve the knowledge and skills of the hep C workforce.

I enjoyed the collaborative feel of this conference and the large number of delegates who attended from user groups, aboriginal communities and those living with hep C – especially the numbers who felt comfortable to disclose in this context. This alone is a small step in reducing the stigma and isolation that many experience in living with this virus.

This conference has been a strange ride for me. I am currently at week 15 of pegylated interferon and ribavirin treatment which is a bizarre roller coaster journey in and of itself. My brain exited the building at 11am yesterday – two hours of mental stimulation and that was enough! Coupled with the full conference schedule, little sleep and these psychedelic wall hangings, it somewhat feels like an acid trip gone wrong.

Interferon is aptly named – it interferes: with cognitive function and the tackling of day to day obstacles. In a similar way, as we have heard in the plenary (opening session), those working in the field of hep C health promotion face obstacles and structural barriers in empowering those who live with hep C (or are at risk of contracting it) to care for their health.

Prohibition has been a bit like the elephant in the living room at this conference. It has been rarely or indirectly mentioned. However, as Helen Tyrrell and Annie Madden discussed this morning, prohibition plays a part in creating the tension between proving health promotion materials that are relevant and interesting and the requirements of funding bodies.

I was saddened to hear of the constraints placed on AIVL’s Junk Mail magazine and the difficulty that Hepatitis Australia had in getting a website for youth established because the content included safe injecting and vein care.

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These issues are important and we need to keep on persevering. Ingrid van Beek (director of the Kirketon Road Centre and medical director of the Medically Supervised Injecting Centre (MSIC)) gave an inspiring presentation about the MSIC showing how, against the political odds, the centre has remained running for six years – even as the ‘eternal trail’, and has provided individualised injecting and vein care advice on nearly 22,000 occasions.

Fiona Poeder, of the Australian Injecting and Illicit Drug Users League (AIVL) in her presentation on AIVL’s hand-washing campaign, talked about how users connected more with messages that took into account what was relevant and a priority to them.

How to prevent abscesses and dirty hits are often of a more immediate and pragmatic concern than hep C. By addressing these issues, it is then easier to engage users with hep C health promotion messages.

Carla Treloar, of the National Centre in HIV Social Research, talked of the importance of a critical approach to current health promotion materials and the necessity of engaging with affected communities to understanding how hep C is conceived. With this understanding, health promotion materials can be reorientated to address the concerns of priority populations.

One theme that came out strongly for me in this conference was the importance of partnership, the use of multi-disciplinary teams and engagement with affected communities in providing hep C care, information and support.

Gary Gahan, Coordinator of Bloodborne Infections Prevention, SE Sydney Illawarra Area Health Service, described the St George Project and showed how an integrated model of care which utilised the expertise and support of local services including a drug treatment program, NSP, sexual health clinic and hepatology services could help facilitate hep C treatment access by lessening the number of doors people have to walk through.

Maree Peterson (of the Hunter New England Health Needle & Syringe Program) presented on the NSP harm reduction nurse and Sophie Dutertre (Australian

www.hepatitisc.org.au

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feature

ommunities

omotion conference

ow people living with hep C can be empowered des an overview of this valuable conference.

Research Centre in Sex, Health and Society, La Trobe University) presented on the Springvale Community Liver Clinic. These presentations showed the benefits of taking the services to where people are, sidestepping structural barriers such as access to transport, and the benefits for people when they receive services where they feel most comfortable.

I think it is important, as Carla Treloar pointed out, that health promotion materials don’t subtly stigmatise through the messages they send. I couldn’t help noticing, as a person living with hep C, the reference to people with hep C as ‘complex patients’ within some of the presentations. I wonder if this is a statement about the clinical nature of the hep C virus or the types of lifestyles that people with hep C are assumed to lead. Patients with cancer, diabetes and other illnesses often receive more complex pharmaceutical interventions and care, yet I don’t know if that are referred to in this manner. I could be wrong.

The ‘complex’ nature of care for people with hep C may stem from and be exacerbated by a lack of resources. This came through strongly in a presentation by Dr Erol Digiusto (SW Sydney Clinical School, Faculty of Medicine, UNSW) who spoke about the nature of services available to patients undertaking hep C treatment in NSW. To hear that a hep C specialist spends on average six minutes per patient per week doesn’t speak to quality support and care.

Erol’s feedback from GPs that work involving patients with hep C is “time consuming and inadequately paid” doesn’t exactly inspire my confidence in the NSW health care system.

This brings us back to the structural issues, or as Helen Keleher (Head of Department, Health Science, Monash University) expressed it, the upstream level of health promotion. Much within the hep C health promotion sector is focused on the downstream, such as prevention. While this is valuable, it is just a small part of health promotion. Craig Sinclair from the Cancer Council showed how education, advocacy, political processes, social and cultural norms and the knowledge and attitudes of individuals all interact in the health promotion context.

Brian Howe (ex-Deputy Prime Minister and Hepatitis Australia patron), in his plenary address, described health promotion as an ethical issue, in that it is about reaching and recognising a balance between individual and social responsibility. An emphasis on ‘choice’ and ‘personal responsibility’ can deny the structural constraints that people experience within this political climate.

As Rod Quantock (Melbourne based comic) said last night, even teddy bear biscuits in Australia have become economically rationalist – hard and unyielding. Therefore, it is doubly important that health promotion workers can see past the current mantra of individual responsibility to recognise and help to alleviate the structural constraints people face in their day to day lives – which then affects the access to and uptake of hep C services.

One of these constraints is stigma. Nicole Highet (of Beyond Blue) showed the success of using a broad based mass media approach. Many hep C programs are targeted at specific populations which may speak to limited funds. However, I would love to see a hep C mass media campaign which increases community awareness and reaches all the many people living with hep C who no longer belong to ‘at risk’ populations and thus are not reached by targeted interventions.

I regret I couldn’t get to all of the sessions, especially that on Health promotion with the Aboriginal and Torres Straight Islander community. I heard from many people that this session was particularly inspiring with fantastically charismatic speakers.

Finally, I loved the session on peers – peer support is a passion of mine and I think it is wonderful to see within this conference the many programs and services that are engaging with affected communities in the construction of programs and health promotion materials. Peer involvement recognises the lived expertise of people from affected communities and this recognition is a small chink in the armour of stigma that surrounds this disease. As Jenny Kelsall (of VIVAIDS) articulated “nothing about us without us”.

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Magdalena Harris, National Centre in HIV Social Research.

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feature

The C-een and Heard hep from the speaker’s viewpo

The Hepatitis C Council of NSW and the Consortium for Social Policy Research on HIV, Hepatitis C an Diseases recently conducted a study that explored the thoughts and attitudes of speakers about thei in the Council’s C-een & Heard service. Grenville Rose reports here on the study.

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he C-een & Heard speakers service has been run by the Hepatitis C Council of NSW (the Council) for around five years. With this service, hep C positive people speak about their experiences of living with hep C in front of health professionals and community groups. The aims of the service are to reduce discrimination and to increase and broaden people’s understanding of the experience of living with hep C. This type of service is not unique to the Council, there are a number of different organisations in Australia and around the world, in different areas of health that have a similar service. As this type of service is quite widespread it would be expected that there is a body of research which has found that this type of service is useful, and indeed this is the case (eg. Bell et al 2006).

The body of research is not large, but it is consistent and indicates that these types of speaking services do indeed reduce discriminatory attitudes in the audience. Five years of feedback to the Council from audiences indicates, additionally, that the speakers also find it a worthwhile experience.

So, discrimination is reduced and the audience members are impressed so it’s all good, right? The answer is ... maybe.

The problem is that there is very little information on how speakers feel about standing up in front of an audience of strangers or, perhaps more worryingly, an audience that includes people they work with, and talking about their experience of living with a potentially stigmatising condition, (eg. Wykurz and Kelly 2002). Specifically, there is no published information relating to the experiences of people with hep C while doing this type of work.

While evidence suggests that the experience of taking part in this general type of service is a positive one, there are also some concerns about whether the retelling of a difficult personal story might result in that

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person becoming more traumatised as a result - and there is a small body of literature also to suggest that this does happen (eg. Honos-Webb et al 2000).

Together, the Council and the Consortium for Social Policy Research on HIV, Hepatitis C and Related Diseases recently conducted a small study which sought to explore the thoughts and attitudes of the speakers about their participation in the Council’s Ceen & Heard service.

Four out of the nine current speakers in the service were interviewed and the recordings were analysed.

Three of the speakers attended a focus group and one speaker was interviewed by phone. Although one of the researchers, Grenville Rose is a speaker in the C-een & Heard service and thus might have a biased viewpoint, he did not participate in the interviews.

The researcher who conducted the interviews and reviewed the analysis and report, Carla Treloar, is independent of C-een & Heard and the Council.

A most pleasing result of the study was that all of the speakers found that their participation in the service to be very positive, ‘98 per cent positive’ as one person said. They found that their participation was exciting and challenging, but that this excitement and challenge was rewarding because there was the possibility to influence the attitudes of those in the audience.

“I actually get a rush from the challenge of it. You know, I almost get a bit high off it, it’s, good. I guess knowing that I may just change …. one opinion today.”

And “if anyone was thinking of doing the speaking then I’d really encourage them to do it, it is quite a rewarding experience. And the more people that get involved, that’s the more, you know, people to make change.”

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hep C speakers service ewpoint

Hepatitis C and Related rs about their participation One of the common fears of speaking in public is that the audience will ask questions that the speaker will have difficulty answering. When this happens it may be due to the audience being hostile for one reason or another, or it may be due to a certain level of ignorance amongst the audience members.

While C-een & Heard speakers are given specialised training by the Council before giving any talks, they are by no means full-time professional speakers, and they are often asked to talk about their personal medical situation.

For some this might sound like a nightmare scenario and there is the real possibility that the speakers might be distressed by audience questions or by comments on the evaluation sheets completed by audience members at the end of a session.

Image - Kaiesh Vohra

Our participant’s comments, however, show that most of the time the questions during the talks and comments in the evaluation sheets were seen as positive, and again it was the ability to change the attitudes of the audience that was rewarding for the speakers.

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feature “I find it rewarding when you get the evaluations afterwards and some of the times they write, oh, you know, things like ... “I’ve changed my attitude, I didn’t realise,” and they didn’t realise that they were discriminating. Or, or they just say, like ... “I have to review my own practice after this,” and things like that … and also when they ask questions, when, you know, they ask questions … and it shows that they’re listening and they’re trying.”

“Yeah, questions are the thing I find most rewarding … if they’re asking the questions then they’re obviously interested in learning and changing their practices.”

The speakers talk in front of different types of audiences, (nurses, doctors, D&A workers, multicultural workers and others) and it might be expected that audience attitudes and reactions would be different. The speakers, however, picked out only one group as being substantially different from the others: doctors.

Speakers felt that doctors were more judgemental and less willing to understand the point of view of the speaker. However, when this sort of attitude is evident, even from such an intimidating audience as a group of doctors, it can still be seen as a positive by the speakers and again it is the desire to change attitudes that helps turn a difficult situation into a positive.

“Doctors are sort of more, you know, like they will devalue you ... what you’re saying, yeah, … this is what they’ve been taught, this is ... how it happens.”

“One of the worst ones was when I went to go up with somebody and, like there was two speakers, and they were doctors … and one of the doctors said that we come from, like, from the bottom of the barrel … and then we had to get up, knowing their attitude. And so that was hard but, like, you wanted to change it.”

As there is the possibility of the sessions’ being confronting, the participants were asked for their views on the necessity for the Council to supply additional support or debriefing after the talks. (The Council usually sends a worker to the venue with the C-een & Heard speaker or, if not, there is always support available over the phone).

All of the participants thought that some kind of external support was useful.

“I think sometimes maybe you do need just a quick debrief after [saying something like] … you did a really good job … don’t worry about what such and such said in the audience.”

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“We can debrief with ... our workers, and I think that’s an important thing that we do have that time to go for a coffee and talk about what we’ve just done … if we need to.”

The heartening finding for the Council is that the speakers in the C-een & Heard service find it to be a very positive experience. This, along with the research indicating that audience attitudes are changed by these kinds of presentation presents us with the sought for win/win situation. The speakers benefit from their participation and the audience is positively changed by the experience.

The participants in this study did, however, allude to some negative aspects of participation and, while all had their own internal resources to draw from, also stated that the external support that the Council provided was comforting and useful.

The current research, however, is limited. The study participants were all experienced speakers who had been with the service for a number of years, and thus were a self-selected group. Any participants who did find the experience a negative one may have withdrawn from the service prior to this study being undertaken. That limitation, along with the small number of participants means that this study must be taken as a preliminary investigation which, while it raises an intriguingly positive scenario, is not definitive of all speakers’ reactions to participation in this type of service in general, or indeed the C-een & Heard service in particular.

•

Grenville Rose (Consultant Psychologist), and Carla Treloar (Head, Hepatitis C Research Centre, National Centre in HIV Social Research).

Bell J, Johns R, Rose G, Chen T, 2006: A Comparative Study of Consumer Participation in Mental Health Pharmacy Education Annals of Pharmacotherapy;40(10):1759-65.

Honos-Webb L, Harrick E, Stiles W, Park C, 2000: Assimilation of traumatic experiences and physical-health outcomes: Cautions for the Pennebaker paradigm. Psychotherapy: Theory, Research, Practice, Training. Vol 37(4).

Wykurz G, Kelly D. 2002: Developing the role of patients as teachers: literature review.

BMJ;325:818-21.

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opinion

Worrying signs of health in ACT jail Writing in The Canberra Times, Bill Bush put the case for greater effort to be put into building a more humane and effective jail in the ACT.

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here is doubt that the ACT community and its politicians are aware of all they are acquiring with their new human rights-compliant jail.

Much is made of ceasing transportation to NSW and taking responsibility for our own prisoners, of providing more ready access by families to detainees and of providing opportunities for local businesses.

The mere establishment of a jail in the ACT will achieve these objectives. The problem is whether the project will meet its other, most important objectives: rehabilitation and a safer ACT community.

Safety and rehabilitation are linked. Prisoners return to the community. The community is safer only if prisoners do not re-offend. Rehabilitation ensures that they do not. The promise of the jail will therefore fail unless it will substantially enhance the prospect of rehabilitation. The promise is broken if the ACT jail achieves only temporary incapacitation and deterrence.

In 2006, 68.4 per cent of ACT prisoners had been in jail before. That was a low year. It had been about 85 per cent in the two previous years. The Government is spending more resources sending more people to jail. The ACT prisoner population has almost doubled in the past 10 years and the number on remand has increased by 133 per cent.

These statistics are not the hallmarks of a safe community. It is young people, and particularly young men, who end up in jail. That they do comes as no surprise. Their life course, if captured in slow motion, would smack of a Greek tragedy leading to jail: the accretion of well known risk factors and dearth of protective ones. Justice Health, which provides health services to inmates and detainees in NSW, says some of the most disadvantaged and stigmatised people in society are in jail - those from disadvantaged backgrounds, with poor education and histories of unemployment. And indigenous people are overrepresented.

If, for example, released prisoners cannot get stable accommodation and employment on their release, they are at high risk of re-offending. Addressing this requires coordinated, whole-of-government action which is not yet occurring. A lot of community accommodation can be bought for the $70,000 a year it costs to keep one person in jail.

The pre-eminent risk factor that a rehabilitative jail would have to tackle is health, particularly mental health and the spread of bloodborne diseases. Health

experts are clear about preventive measures. Key among them are ones informed by the reality of substance abuse in jail and of addiction being a health condition that requires a health and not a law-andorder response.

The framework legislation for the jail, the Corrections Management Bill, is about to be debated. It and the associated correctional drug and alcohol strategy erect a coercive regime of testing, searching, segregation, monitoring and discipline aimed at the impossibility of keeping drugs out. Security is the paramount consideration that can be used to trump everything else. Against international standards and recommendations of Australian inquiries, the legislation would place jail health services under the control of the correctional, not health authorities.

This also stands in the way of combating bloodborne diseases. Hepatitis Australia has called on governments to act now to provide all prisoners with access to sterile injecting, tattooing and piercing equipment, and education and treatment options. The framework for an effective national response to HIV/ AIDS in jails (by the United Nations Office on Drugs and Crime) points out that reducing the transmission of HIV in jails is an integral part of reducing the spread of infection in the broader society. Any diseases contracted in jail, or any medical conditions made worse by poor conditions of confinement, become issues of public health for the wider society when people are released.

The operational regime that is emerging for the jail reflects a mindset that gives top priority to jail security and abstinence. The product will be people with an increase of risk factors for re-offending. Prisoners may leave with a bloodborne disease they did not have.

If they did not take drugs in jail, their difficulty as ex-prisoners of gaining employment and otherwise reestablishing themselves is likely to produce a relapse of drug use.

An altogether different operational regime would emerge from a mindset that placed top priority on improving health, social functionality, reducing recidivism and, indeed, of promoting community wellbeing. Unfortunately, the signs are that for all the verbal deference to human rights and rehabilitation, the ACT is buying for itself a typical jail.

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Bill Bush is a member of Families and Friends for Drug Law Reform and of the Community Coalition on Corrections.

Abridged from The Canberra Times, 1/6/07

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my story

Hep C and me in the N I

’ve often wondered where I got the hep C virus that is my burden to live with. Granted, given that 90 per cent of injecting drug users acquired the HCV through sharing used fits or other contaminated equipment like spoons, filters or swabs, and that I’m an ex-injecting drug user, then I probably got it that way too … but I’ve often wondered.

I’ve wondered if it wasn’t the blood transfusion I had following a car accident in 1973, or perhaps the blood brother thing I did with my best friend and exchanged blood. I’ve also questioned whether it came from unsafe sex practises, which although considered extremely low-risk, I practised often in the 1970’s.

As I don’t have any tattoos I couldn’t have got it that way, but maybe I was unlucky enough to catch it off somebody’s razor or toothbrush.

However, for all the possible ways leading to my infection and HCV positive status, the path that it most likely took is through sharing used injecting equipment.

I don’t display a lot of obvious symptoms. Nothing I can lay my hands on and say ‘this is my hep C doing this to me’. There are just a suite of minor things, such as an ‘achey liver’ after a few too many beers (or too much rich cheese), tiredness if I lay around and do nothing for a while, the odd wave of not-quite depression if I think about my status too much, and other little niggly ailments that may, or may not be, my hep C. It just may be that I’m getting older.

I know I’m not alone. There are roughly 270,000 others like me. However, according to the Australian Doctor (25th March 2005), notifications of hep C in Australia could be underestimating the true extent of the virus’s impact, after a recent survey has suggested a prevalence of 2.3 per cent which translates into about 433,000 cases nationwide.

Some of us with hep C may show only mild, flu-like symptoms or no symptoms at all during the acute stage, which is what happened to me. Symptoms that can appear in others during this period include darkcoloured urine or jaundice (when the skin and the whites of the eyes go yellow). However, when hep C becomes chronic, which is when the initial infection persists for more than six months, it’s called chronic hep C. Symptoms of chronic hep C can include mild to severe tiredness, fever, joint pains, loss of appetite, vomiting and soreness in the upper right side of the stomach (under the ribs).

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our blood for life (unless successful with treatment).

We have an increased risk of developing cirrhosis (scarring) of the liver and some of us will develop liver cancer. We can also infect other people at any time.

And not only with one strain of the virus, either. There are 11 strains, or genotypes, which, funnily enough, are named 1 through 11. These 11 can have up to three sub-types each (of which there are more than twenty, and known as 1a, 1b, 1c, 2a, etc.) with each sub-type having millions of members, known as quasispecies.

I think of it like this. However much they may look alike, wolves are not dogs. They are separate species in the same way that different genotypes are. But there are several sub-species of wolf and many breeds of dog. These are analogous to the sub-types. Then, each individual dog has certain characteristics that make them different from other dogs. These represent the quasi-species.

It is thought that within a HCV sub-type, several million quasi-species may exist. Scientists predict that those of us who have hep C may have billions of actual viruses circulating within our bodies! Although there may be one or two predominant sub-types, the infection as a whole is not a single entity and is composed of many different quasi-species.

Thinking that forewarned is fore-armed , I tried to inform myself on possible treatments. It turns out that current medical treatment for hep C is limited to pegylated interferon combination therapy.

Combination anti-viral therapy means that there would be a number of medications used at the same time to fight my HCV. The treatment is a combination of interferon injections and ribavirin tablets.

This therapy is effective in roughly 50 per cent of cases of hep C genotype 1 (responsible for around 50 per cent of cases in Australia and the one I’m identified as having). It is up to 90 per cent effective with genotypes 2 and 3 (responsible for roughly 42 per cent of cases in Australia). In medical terms, the 50 per cent of effective combination respondents achieve what is known as a sustained viral response. In other words, the virus would become undetectable in my blood tests if it was effective.

But (and this is a big but) while on treatment there are a range of side effects. Some of the most common are: ‘flu like symptoms, muscle aches, headaches, fevers and tiredness, depression , irritability or confusion, feeling sick in the stomach, and loss of appetite or diarrhoea. I could also experience weight loss, skin rashes or worsening of existing skin conditions such as

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my story

e Northern Territory psoriasis. I could also experience a drop in libido and temporary hair loss. (I could also experience visual loss and deafness, although apparently this is rare.)

The main reason I haven’t bothered to get treatment is because I don’t yet need it, but it is scary to think that I may get to the point where I have to. It’s even scarier to think I would have to suffer some or possibly all of these side-effects and still only have 50 per cent chance of an effective outcome. I chat on the internet to HCV positive people undergoing treatment and they tell me that the treatment can create great difficulties with partners, children and friends, as the fatigue, irritability or other side-effects take their toll.

They tell me that they anger easily or get “riba-rage”, that they can’t move off the couch for days on end, that everything’s worthless and some say that they can’t stand to be out in the sun. Very scary indeed.

However, if this is what it would take to have a 50 per cent chance of surviving, then I would do it.

I would finish by saying that although I don’t have a particular problem about being known to be HCV positive, it does make me angry that there seems to be a lot of discrimination associated with this disease. Some people - particularly injecting drug

users - feel stigmatised by their HCV positive status and the consequences that can stem from it. Those whose status may be known sometimes get seen last by dentists, they may feel discriminated against in the workplace or they have difficulty trying to make others understand what the virus is. Others don’t admit their status for fear that they may encounter the problems described.

My response to the virus? I sometimes think it’s all a vast conspiracy, but I certainly don’t believe that.

It’s more like nature doing its job of reproducing life – it just happens to be expressed through a virus that harms humans. Furthermore, if I was to consider combo treatment I’m sure I would be asking if it would all be worth it given the financial, physical and emotional costs it could entail. And, finally, I want to change the way people think about HCV, and try and make this “silent” epidemic a little louder.

Tom, NT I would like to acknowledge and thank NSW Health and Clinic 34 (here in the NT) for information on treatments and genotypes in this article.

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my story

A story of HIV and he T

he day I received the news that I had hep C could not have been more poorly timed as it was just three days before I was due to go overseas on a holiday in June 2003. My doctor informed me I had the disease after a routine liver function test picked up an ALT reading ten times higher than normal.

with fewer side effects. Up to six ribavirin tablets per day are taken as well (three in the morning and three in the evening).

I was shocked and devastated, with no idea how I could have contracted the illness, having thought I had taken all precautions. I was not sharing needles which is the main form of transmission. To this day, I am still not sure how I contracted hep C, but it appears that it could have been a sexual transmission.

I was extremely concerned for my health, as just eight months prior I was diagnosed HIV positive, so now I had a coinfection.

•

It was now January 2004. I was aware I had the disease in June 2003 which was only about three months after I had contracted it. Treating the disease early meant a better chance of success.

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HIV and hep C coinfection can be dangerous.

•

Although I had no symptoms besides an elevated liver function, I just could not bear the thought of sitting around and not taking action, and possibly ending up very sick or worse, dead.

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I was living in Sydney at the time, but knew in my mind, I had to leave the big city if I wanted to do the treatment.

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I had no idea what effect it would have on me, and I did not want to have people seeing me if I got sick, as this was my perception of what may happen.

•

Being a gay man in Sydney also places undue pressure on you when other gay men may be critical of one’s appearance. In reality, I didn’t really give a damn what people thought, but I just didn’t want to have that stigma and negative comments to deal with on top of treatment.

My best friend gave me good advice. “Just go and enjoy your holiday. There is nothing you can do until you get back.”

It was impossible to do this as all I wanted to do was see a specialist and start some action in dealing with the disease. However, I tried to put it to the back of my mind and enjoyed my holiday immensely, as I knew I had to deal with a lot on my return.

When I returned from overseas I sank into the biggest depression of my life. For over six months, I debated in my head and with my doctors and friends about whether or not to undergo hep C treatment. I was on HIV medication which had worked well to bring that disease to an undetectable level with a healthy CD4 count. However, with a hep C genotype 1 diagnosis, I was getting mixed information from all types of sources that the combination treatment (interferon and ribavirin) can have very nasty side effects with perhaps only a possible 20 per cent success rate after 48 weeks of treatment (because I had HIV as well).

I was so scared I would not be able to cope with the treatment, perhaps only to find at the end of the initial three months when they first test to see if the virus has been affected by the treatment, that it may not have worked. I now feel that the information I was getting, was coming from those who had experienced bad side effects on the old style of interferon treatment which was three injections per week.

On offer to me, was the new type of treatment as just one injection per week (pegylated interferon), which is slowly released through the body to fight the hep C,

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In the end, I had to make a decision, as my future health and perhaps life, was now on the line. I weighed up the positives and negatives.

Remember … all of this was just my projection of what I thought I would go through. I had no real evidence. My brilliant general practitioner, Dr Dick Quan, my specialist, Dr Greg Dore at St. Vincent’s Hospital and my best friend were the catalysts for convincing me to give the treatment a go.

Many doctors in general practices such as Holdsworth House General Practice in Sydney, specialise in HIV and hepatitis so that is a great place to seek initial consultation and then expert advice, support and care during your treatment.

My best friend suggested I move out of Sydney to a quieter city near him, where I could be in an environment with less temptations, less stress, and close to his support. I thought to myself that if I did not at least give the treatment my best shot, I may regret things down the track.

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d hep C coinfection I left Sydney in September 2004, moving to a large rental property where I could grow vegetables and do other gardening which proved to be very therapeutic. I commenced treatment as soon as I had moved.

I am heavily into health and fitness and go to the gym regularly, and try to eat very well and take vitamins.

At the time of treatment commencement, I really increased my fitness level. I was told that because I was only 32, healthy and fit, and was treating the virus early, I had a good chance of beating it. Of course I was petrified, and had decided to be on sickness benefits and not work.

I thought I may not be able to go the gym anymore and that I may get very depressed and not look well. But I was determined and believed I had the possibility of clearing the hep C (not an option with HIV), and that this horrible nightmare could end if the treatment worked.

I commenced the treatment not knowing what may happen. I remember the first day very clearly, when I was shown how to inject myself with interferon and was given my first injection by Zoe, the hep C clinical nurse specialist at St Vincent’s Hospital. I was so scared and apprehensive, but she is a brilliant nurse and was a great support prior to, and throughout the treatment.

The first injection does have the most side effects. I was very lethargic with headaches for about 48 hours.

The side effects decrease over time.

Although I heard so many horror stories about side effects, I believe I had fewer myself because I kept up a healthy lifestyle of exercise, plenty of rest and a really healthy diet. My biggest side effects (and remember everyone is different, so what I experienced will be unique) were periods of depression, insomnia and a heightened sensitivity to pain. My red blood cell count dropped 35 per cent, so I had to reduce the ribavirin dosage from six tablets to five per day.

This subsequently helped my red blood cell count to rise slightly again so that I was not getting as short of breath.

Image - Greg Hollobaugh

I lost some of my strength at the gym and continued to do so, and eventually lost about six kilograms, but I was SO grateful that I was able to continue a schedule of three to five gym workouts per week, even from about week two of the treatment.

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my story Without this outlet or riding my push bike to the gym and exercising, I would have felt very lazy as I have always been pretty active. The headaches and nausea were more heightened near the beginning of the treatment, but nothing that could not be fixed with headache or anti-nausea tablets. I also experienced periods of lack of motivation and depression, and this can be very overwhelming at times, but I knew that it was the treatment doing this to me, and that I wasn’t mentally ill, and that it would be only a short term side effect.

After 12 weeks, I got the great news I needed to hear ... that my hep C viral load had become undetectable and my liver function dropped down to almost normal. I could now see the light at the end of the tunnel, and the 48 weeks just flew by.

Chance of treatment success may be higher without a coinfection of HIV. In comparison with the results doctors were getting about six years ago, this new pegylated interferon and ribavirin combination treatment literally could save your life. Therefore, isn’t that hope far more of a wonderful feeling to hold on to, than the belief that you will not have success with treatment.

My only regret was taking about a year to decide to commence the treatment. Through all that anguish, I could have undergone the treatment, cleared the virus and saved a year of depression and worry about something I knew little about. Please try to get all the facts and talk to people who have successfully been treated.

Having my weekly injection was just like taking a vitamin. Once the treatment is over, you will feel like a new person again as the depression leaves you and your energy levels come back and the side effects stop.

My own private nightmare that so few people in my life knew about was over, and now three months on from that final blood test, the memory of hep C just seems like a distant bad dream. In fact, with hindsight, the experience was a very positive one for me.

It allowed me to just take a step back from my hectic life and enjoy things like gardening and walking along creeks … things, that sometimes as an adult we forget just how much joy they bring. I feel much more mature and able to help others in situations of distress or illness, which is why I am so keen to get my story out to you all, so you can read a balanced testimony.

I must reiterate that my case, like everyone else’s, is unique. However, if you have coinfection of HIV and hep C and are considering treatment for hep C, I strongly advise you to at least give it a go, and see how you handle it. Every person I have spoken to has had a different experience, has handled the treatment differently and has experienced different side effects.

If you can keep yourself healthy, avoid drugs and alcohol and can treat the hep C early on, you have a very good chance of clearing the virus - in reality, perhaps up to an 80 per cent chance of success, which I was told half way through my treatment.

This is vastly different from the 20 per cent chance of curing the hep C someone told me at the beginning.

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Image - Lisa Bliss Chin

I was very keen to get back into the workforce and moved back to Sydney to do that. If I had to do it all over again, I would, to rid myself of this disease. After the 48 weeks, my virus was still undetectable, and was again six months later, and finally, completely undetectable at the 18 month follow up blood test.

Call the Hep C Helpline and go to hep C support groups so you don’t feel like you have to go through it alone. These support groups are fantastic because you are with people who won’t judge you and will help you, as you will help them to understand how to deal with the treatment and it’s effect on your life.

When doing the treatment, just take each day as it comes and have faith that you are potentially one day closer to freedom from the disease. Imagine you are just simply in a fog and at the end of the fog is a beautiful peaceful beach. Just keep picturing how wonderful that feeling will be … to be hep C free.

Matt, NSW. Risk of sexual transmission of HCV via heterosexual contact remains extremely low.

Risk among HIV negative men who have sex with men is also very low. The risk is higher for HIV positive men who have unprotected sex with men. ED

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feature

Hep C nurse practitioners - a new beginning Tracey Jones highlights developments in the nurse’s role in hep C treatment.

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Image - Hanna Nikkanen

his is a personal story as well as a very public one. Most people know me and know that I have worked within the area of hep C nursing for almost twelve years. I am known for my passionate beliefs and staunch advocacy of patient rights as well as a passion for the development and recognition of the hepatology nurse’s role.

I had the pleasure of working with and being guided by one of the most influential men within this area, Professor Robert Batey and greatly value his support.

What he did though is unleash a monster, a little mouse that became the first Hepatology Nurse Practitioner in NSW. During the first five years of my role as Clinical Nurse Consultant-Hepatitis C at the John Hunter Hospital Hepatitis C clinic, I primarily educated and supported the patients regarding their medication including administration and management of side effects. I also conducted educational updates for healthcare staff within the area.

After that time I was looking for a personal and professional challenge. I approached Professor Batey with the idea of conducting a pre-assessment clinic to review patients prior to their specialist appointments.

The staff specialists had been expressing some concern that the general practitioners at that time were referring patients too early and with inadequate testing and assessment. Professor Batey agreed and the preassessment clinic has now grown over the past seven years to become an integral part of the management process of our service.

All new referrals are assessed and triaged by me prior to patients’ appointments being arranged. I believe this reflects a high level of respect for my role as the CNC and now Nurse Practitioner and my capability to be able to make clinical judgements based on limited information.

My authorisation as a Nurse Practitioner is the fulfilment of a lengthy process that began in 2004, when with the support of my team I applied to do my Masters of Nursing (Nurse Practitioner). The next major step is the development of my scope of practice and clinical guidelines. This will include my drug formulary and enable me to prescribe hep C medication and order relevant pathology and diagnostic tests.

Within NSW, once my guidelines are approved at an area level, they will be available for other nurses working within the field of hepatology to adapt for their own respective scope of practice and clinical guidelines. This will support one of my desires that I have had from day one, that all patients no matter where they are within the state, will have access to consistent and up-to-date practices.

My managers, medical and nursing colleagues are as excited as I am about the capacity of the role and the positive impact that it will have on improving service provision and health outcomes for people with liver disease.

All that Nurse Practitioners need to expand the opportunities for managing patients within both government and non-government facilities to increase treatment access and participation is a Medicare rebate number.

Of course, Area Health Service planning, resource allocation and position creation on the basis of evidenced need are essential ingredients to creating a sustainable Nurse Practitioner position.

•

Tracey Jones is Nurse Practitioner-Hepatology at the Hepatitis Service, Hunter New England Health.

Also see ED48, p20. ED

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feature

The Last King produce

Lisa Bryer is feeling better than she has for some years. Not only has she finally recovered from the s she has also just finished a gruelling six-month treatment for hep C. Alison Roberts writes about this

L

“There was a nightshoot - we were filming day and night - and the director Kevin Macdonald was tearing his hair out because we couldn’t give him any more time or money.

She has just returned from a health farm in Brazil called Body and Soul (“more of a boot camp really, with hiking and kayaking and eating lots of vegetables”), and looks tanned and well in a kaftan and black slacks.

“I was literally there for 24 hours on that occasion.

I had to fly back on the 9am flight, and I remember thinking, I actually don’t think I can continue with this. On one hand I’m trying to remain sane for my family and my boys, and I’m also trying to run a company with a multi-million-pound turnover.”

isa Bryer, co-producer of the Bafta Awardwinning The Last King of Scotland, is sitting in her office in her big house in Notting Hill drinking a large glass of very green cucumber and celery juice.

Indeed, at 49, she is feeling better than she has for some years. Not only has she finally recovered from the shattering exhaustion of filming Last King, in Uganda, she has also just finished a gruelling sixmonth treatment for hep C - a disease she contracted 25 years ago as a heroin user.

Bryer’s is an extraordinary journey - from eight years of heroin addiction to red carpet receptions and glittering premieres. In the wake of Last King’s worldwide success Lisa became one of the biggest names in British film; yet she has now decided to sell up her independent production company, Cowboy Films, give up work and concentrate instead on her family.

She is also increasing the amount of time she devotes to the drugs charity Action on Addiction, of which she is trustee. “I’m incredibly lucky. I have the financial infrastructure to do this. I’ve worked all my life, I’ve travelled, and finally I’ve had this great success with Last King.

Despite the movie’s quality and success, her brush with Hollywood has left her deeply disillusioned; the “big machine” that is an American studio lacks “compassion” and can be “exploitative”. At times, flying back and forth from London to Uganda, where filming took place under extremely basic conditions and to a very tight schedule dictated by Fox, she wondered whether she could even go on.

“It did get to a very low point. I remember very vividly arriving in Entebbe on one occasion. I hate flying, absolutely hate it, and now of course I can’t get drunk or take any pills. I got off a very bumpy overnight flight at about 5am and drove down this very dangerous road - the road that Idi Amin used to escape the country - to the film set.

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“It was very tough on the crew. They were filming 16hour days and Kevin was pushing them to the absolute max. There were threats of mutiny, not because they didn’t love Kevin or believe in the film, but because they were just so exhausted. There was malaria and dysentery. Our poor accountant is still suffering the affects of having full-blown malaria. They were hanging in rags.”

Unbeknown to her, Bryer was also exhausted because of hep C. She first discovered the presence of the illness 12 years ago, but was told by doctors that her liver was okay and that the treatment was horrendous and not very successful anyway. Her health was closely monitored, and last year doctors finally advised that she take a six-month course of interferon.

Bryer is an undeniably successful woman, the kind of person who enters a room and turns heads by sheer force of personality. Yet you sense a trace of fragility beneath the warm confidence. She has never spoken publicly about her drug use before, and though she does so openly and frankly, at times the memories threaten to overwhelm her. She apologises as she trips over words, or, biting her lip, pauses to recompose herself.

“Having two parents who were always working and who had very powerful, very active businesses, did not help at all. I grew up feeling that whatever I said was neither important nor good enough.

“I went from being this sweet pretty little girl to this monster with dyed-black hair.” She did not pass a single exam and instead, on the night of her 18th birthday, moved out of the family home, taking a job at the Great American Disaster burger bar in Chelsea and a flat with a boyfriend.

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feature

ucer’s combo recovery

red from the shattering exhaustion of filming Last King, in Uganda, es about this high achieving Brit.

Bryer swiftly discovered drugs, progressing to heroin.

“I discovered something that made me not feel. I loved that. It was addictive very quickly.

I overdosed a few times and I was lucky enough to have someone with me on each occasion who got my heart started. You didn’t call an ambulance in those days because the police came too.”

But it was film-making that got her out. Desperate to help his floundering daughter, her father asked one of his patients, the director Tony Palmer, to find her a job on his new movie. As a result, in 1983 Lisa became a runner on the epic film Wagner, starring Richard Burton, Laurence Olivier and John Gielgud. She was still using heroin, but for the first time she had found something that absorbed her totally.

“I was 25, and I loved every minute of that film, travelling all over Europe and finally realising that my life could be good. But I couldn’t stay off the drugs.

I guess I got to the point where I just thought, once a junkie, always a junkie.”

“Then I bumped into a friend of mine, someone I’d done a lot of using with, and he looked incredibly well. He told me he’d been going to something called Narcotics Anonymous, and that he would take me to a meeting. I went along and just burst into tears. I thought: I’m in the right place. This is a room full of people like me - and they’re getting better.”

Bryer still goes to NA, partly for her own sake and partly to help others beginning to tackle their dependency. She also works with inmates in Holloway Prison, whose desperate circumstances sadden her enormously.

Today, she says, her life revolves around her twin boys. “Motherhood is the greatest challenge I’ve ever had. I’m still very busy - I’m involved with several children’s charities in Africa, too - but I’m here during the day for them. And I love it.”

“The thing is, now that I’m a parent, I’ve also forgiven my parents a million times. Because now I realise how hard it is to do. The older I get, the younger and happier I feel. And that’s because I know myself better.

In the end, as much as I feel let down by the studio, I also feel that life’s too short.

“It’s important to say that they did give us the money to make the film, they did take a risk and when we delivered a great film, they did get behind it, and spent millions getting bums on seats. It was my decision to involve them and I knew that by doing that I wasn’t making a good financial deal - but that they would make sure the world saw it. And the world has seen it. I think it’s a really important film about a really important historical subject. And that, for me, is worth a lot more at the end of the day than just about anything else.”

Is it a permanent retirement? She narrows her eyes and smiles. “I’m doing some advisory work. I’m keeping my hand in. Maybe one day.” When she’s mothered those boys to pieces, I wouldn’t bet on Lisa Bryer not making another successful comeback.

•

By Alison Roberts, writer for The Evening Standard. Abridged from www.actiononaddiction. org.uk via C-Network.

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media watch

All Saints One moment in time W

hen a hep C patient, Adriana, walks into All Saints declaring herself to be at endstage liver failure, Dan and Charlotte are distressed to realise she’s embracing her death rather than trying to fight it. When Dan questions her about this she reveals the reason for going off her meds - the recent death of her husband whom she wants to follow into the afterlife. Her survivor guilt is compounded by the fact he died of hep C - which she thinks he contracted from her.

As Dan listens to Adriana’s heartbreaking story he accidentally gives himself a needlestick injury contaminating himself with Adriana’s blood. In that one second, his whole life changes and he finds himself shutting down emotionally - even from Erica.

He’s immediately cared for by Gabrielle and Frank who explain the protocol he’ll have to work and live by for the next six months until blood tests prove he’s free of the disease - or not.

In a related story, ambulance officers, Cate and Heath, are called out to an abandoned silo where a mother and son have crashed five metres to the floor below.

Once Cate is lowered down she also discovers the mum is a drug user who was at the silo - a known pushers hangout - to score.

The ambos split with Heath taking Lindy to hospital and Cate later travels with the son, Caleb, into All Saints where, to Von’s horror, Bart’s naïve questioning of the teenager forces him to reveal his mum, Lindy, was prostituting herself for drugs.

When Frank finds out about Bart’s unorthodox questioning of Caleb, he throws him out of the boy’s cubicle, only later apologizing and finally admitting Bart’s clinical work with the boy was courageous and life-saving.

This is an abridged synopsis of Channel Seven’s All Saints, Episode 397, taken from http:// au.blogs.yahoo.com/all-saints/2185/episode397one-moment-in-time On a score of one to ten, for hep C accuracy, the show gets a solid nine points. In the show, after Dan’s needlestick, he is told he must wait six months for the crucial blood test to show whether he has contracted hep C. The reality is that any health care worker suffering a needlestick injury will be offered PCR testing at six weeks following the incident - see www. health.nsw.gov.au/policies/PD/2005/pdf/PD2005_ 311.pdf The episode also dealt with health care worker attitudes to drug users. The drug using mother, Lindy, was given first class treatment by the emergency surgical team irrespective of her background. This was explicitly reinforced through conversations between team members.

All in all, a great show to begin a hep C thread in this well regarded Australian TV medical drama.

Image - All Saints

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HCCNSW

Dan (Mark Priestley)cannulates Adriana (Maureen Ryan)and gives himself a needle stick injury.

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feature

I went to the doctor about two weeks ago because I was feeling a bit run-down.

He did lots of different tests and I came back as hep C positive. I feel very scared and confused. I told my boyfriend and he got really angry and said I had put him at risk and stormed out. Then I told my mum and she freaked out and said I couldn’t look after my sister’s kids anymore as I might pass it on. What do I do?

Receiving a new diagnosis of hep C can be a very scary and difficult time in a person’s life, and initial reactions from people you love can have a big impact on how you feel in the future.

I wonder how much information you have been provided? Here at the Hep C Council we have lots of booklets and resources that can give you correct information and help to reassure you at this crucial time. Once people access the facts and gain a better understanding of what having hep C might mean they are usually able to calm down a bit and realise that it doesn’t have to be the major focus in their lives.

Let’s look at each of the problems individually…

Regards your boyfriend, as I said, it is pretty normal for people to be a bit scared and unsure when someone they know is diagnosed with the virus. They often start to think about what will happen if they get hep C, and then start to worry about their partner or friend and the long term effects it might have for their health.

Many people don’t really understand how hep C is passed on, and believe that casual contact or sexual contact is a big risk.

The reality is that sexual transmission in a long term, monogamous relationship is actually very low risk.

There have been long term research studies into this very issue and they have shown that very few people, if any, in this situation will get hep C via sex. Basically there has to be blood present for there to be a risk of transmission.

The same can be said for your sister’s kids. Touching other people, alongside sharing food, cups, plates, cutlery, showers, toilets, linen and towels do NOT pose a risk for hep C transmission. We encourage people to maintain contact with all family members and friends and certainly not stop hugging or kissing, and in your case playing with children.

Hep C is transmitted when the blood of a person with the virus gets into another person’s bloodstream. As you can imagine, that doesn’t occur through casual contact, rather through very specific activities like injecting drugs, tattooing or needlestick injuries.

Getting those extreme reactions from people you love can be very hard to deal with. They are often based on the other person’s lack of knowledge and fear, and usually once these two things are addressed they are able to accept that their loved one has hep C, but that doesn’t mean they are at any great risk of getting it themselves.

We would encourage you to follow up your diagnosis with a visit to a GP who has a good level of understanding of the virus (we can provide details of hep C friendly GPs if needed), and possibly even visit a liver specialist. There are many options available for people living with hep C, including treatment, and it is important to explore them all and decide what is right for you.

•

Hep C Helpline

“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.

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feature

Your guide to feeling le

Most of us chalk up tiredness to having too much to do and not enough time to do it in, especially du what we eat, how we sleep, and how we cope emotionally. Nancy Rones explores 22 tips that can help

E

very day, we hear people complain of being tired. Most of us chalk it up to having too much to do and not enough time to do it in. Often the true culprits are our everyday habits ... what we eat, how we sleep and how we cope emotionally. Read on for some simple, recharging changes that can help you tackle all of the energy stealers in your life.

Energize Your Diet Why is it that filling up on pasta or Chinese food for lunch leaves us snacking and sleepy an hour later? Or that falling short on fluids makes us forgetful and foggy? Fact is, eating habits play a powerful role in how well we function on every level. Below, six top fatiguefighting nutrition strategies to chew on.

1. Have breakfast ... even if you don’t feel hungry.

Studies show that people who eat breakfast feel better both mentally and physically than those who skip their morning meal. British researchers at Cardiff University even found that spooning up a bowl of breakfast cereal every morning is associated with lower levels of the stress hormone cortisol.

2. Eat every three to four hours. Having three smallish meals and two snacks throughout the day can keep your blood sugar and energy levels stable all day long, says Roberta Anding, a spokesperson for the American Dietetic Association. At each mini-meal, get a mix of carbohydrates (which the body uses for energy), protein (which helps sustain energy if needed), and healthy fats like those found in fish, nuts, and olives - these fats and protein contribute to meal satisfaction, so you don’t go hunting for sweets an hour later and wind up with a short sugar high and subsequent crash.

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3. Fill up on more fibre. Fibre has a time-releasing effect on carbs, so they enter your bloodstream at a slow and steady pace, giving you energy staying power. When choosing your mini-meals (see above), include fibre-filled options that add up to the daily recommended 25 to 30 grams of fibre (the average person gets only between 10 and 15 grams).

4. Fuel your brain with omega-3s. Found in fatty fish (such as tuna and salmon), walnuts and canola oil, these essential fatty acids play a role in keeping brain cells healthy and helping you feel mentally alert.

Another potential bonus: Omega-3s encourage the body to store carbs as glycogen - the storage form of glucose (blood sugar) and the body’s main source of stored fuel - rather than as fat.

5. Stay hydrated. Water makes up the majority of your blood and other body fluids, and even mild dehydration can cause blood to thicken, forcing the heart to pump harder to carry blood to your cells and organs and resulting in fatigue. Also, ample fluids keep energy-fueling nutrients flowing throughout the body.

Besides drinking more, you can also consume foods that naturally contain water, such as yogurt, broccoli, carrots, and juicy fruits, like watermelons, oranges, and grapefruits.

6. Watch caffeine intake after noon. Typically, consuming a moderate amount of caffeine - 200 to 300 mg, the amount found in two to three cups of coffee - can make you more energetic and alert in the hours following. When caffeine is consumed in large quantities - or anytime in the afternoon or evening - the quality of your sleep that night can take a nose dive, leaving you with heavy eyelids the next day.

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feature

g less tired

especially during extra-busy periods. But often the true culprits are our everyday habits: that can help you tackle the energy stealers in your life.

Energize Your Spirit

We’re all familiar with physical exhaustion, but mental strain - sadness, boredom, worry, anger, and general stress (the biggie) - can take an even heavier toll on vitality, completely wearing you out. Life happens, and these difficult emotions will, too. But if you react wisely, your brain and body will rebound - along with your vim and vigour.

7. Splash some water on your face or take a shower when you’re feeling burned-out. Some 55 per cent of study participants reported using these types of “water therapy” to successfully increase their energy, according to findings in the Journal of Personality and Social Psychology. Apparently, a little H2O refresher can instantly help take the edge off when you’re feeling overwhelmed.

8. Suit up in a “power” outfit to beat the blahs.

Fight the tendency to throw on sloppy clothes when you’re feeling sluggish. Although it may seem counterintuitive to slip into the outfit you save for special occasions, it helps to look in the mirror and see an energizing image - not a deflating one that confirms and reinforces your internal state. Dressing for success will give you a big mental boost every time you catch sight of your reflection (or receive a compliment) throughout the day.

runners in one study who listened to music while on the treadmill ran faster than those who jogged in silence, no matter how loud the volume or how fast the tempo. Research suggests that music effectively distracts you from feeling fatigue. Try burning a CD of your favourite songs and playing it anytime you need a pick-me-up.

11. Let go of grudges. Nursing a grudge prompts your mind and body to react as if they’re under chronic stress, increasing your heart rate and blood pressure and potentially resulting in an impaired immune system and exhaustion over time. On the other hand, practising empathy and forgiveness after you’ve been wronged makes you feel as if you’re back in control, which keeps the body’s stress responses in check. The next time you find yourself harbouring ill feelings, repeat a stress-relieving mantra to yourself, such as, “forgiveness makes me a happier and stronger person.”

12. Take belly breaths. When we’re under stress, we’re prone to take “chest breaths” - short, shallow ones. Chest breathing brings less air into the lungs and reduces the supply of energising oxygen to the body and brain, leaving you physically and mentally drained. When you breathe in, your belly should round and fill like a balloon. On an exhale, your belly should slowly deflate. Try posting a tranquil picture (such as a pool of water or your kids smiling) with the word “breathe” next to your computer, or anywhere you tend to feel on edge.

13. De-clutter a corner. Go through that teetering pile of papers or overflowing closet and clear it out. Clutter can make you feel out of control and overwhelmed, especially when you’re already feeling stressed or down. Plus, simply accomplishing a goal, no matter how seemingly minor, can be energizing.

9. Vent your feelings. Keeping fear, anxiety, and stress pent up inside may seem like a grown-up way to deal with these emotions. But discussing negative feelings with another person can ease them far better than keeping them bottled up; by airing them, you reduce their ability to sap your stamina.

14. Do some good. Acts of altruism can lend a little pep to your step. In fact, one study in the Journal of Health and Social Behaviour found that volunteer work can boost your energy in six ways: It enhances happiness, life satisfaction, self-esteem, sense of control over life, physical health, and mood.

10. Turn on some tunes. Listening to music is one of the most effective ways to change a bad mood, decrease tension and increase energy. Consider that

[Find short- and long-term volunteer opportunities at http://volunteersearch.gov.au/ and http://govolunteer. com.au]

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feature Get a Restorative Rest

When you have a lot to do, usually the first thing to get squeezed off your agenda is sleep. But miss out on shut-eye and your energy, positivity, productivity and memory are sure to suffer. And nearly a quarter of adults aren’t getting enough rest, which has led to an epidemic of daytime sleepiness. The key to bucking this trend is to brush up on sleep hygiene. Try these steps for starters.

15. Cut back on TV and computer time after 8 pm.

If you’re already a night owl (you go to bed late and sleep in on weekends), the bright light emitted from television and computer screens can make falling asleep at a decent hour even harder. The reason is that light suppresses the production of melatonin, a hormone secreted at sunset that tells the brain that it’s night time. And when melatonin levels are low, your brain is fooled into thinking that it’s still daytime - and remains raring to go. Whenever possible, wait until the next morning to tune in and/or log on. If you must use light-emitting technology at night, try to turn it off an hour or two before hitting the sack.

16. Hide your alarm clock. Watching the clock to see how long it’s taking you to drift off or how much time you have left before your alarm goes off can result in a poor night’s sleep. This hyper-vigilance keeps the brain awake and alert and prevents you from slipping into deep, restorative sleep. The easy fix is to set your alarm clock, then either face the numbers away from you or put it on the floor, in a drawer, or across the room.

17. Give your pet his own separate sleeping space.

At night, pets snore, jiggle their tags, move around a lot and even hog the covers and bed space. It’s no wonder that 53 per cent of pet owners who sleep with their pets in the bedroom have some type of disrupted sleep every night. Consider relocating your furry friend’s sleeping quarters to another area, even if it’s just his own bed in your bedroom.

18. Lower the thermostat. For a good night’s sleep, make sure your room is comfortably cool - enough so that you need a light blanket. This ensures that your environment is in sync with your body’s internal

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temperature, which naturally drops during the night.

Studies suggest the ideal sleeping temperature is between 12 and 23 degrees; anything cooler or warmer may cause you to wake up.

19. Skip the nightcap. Alcohol depresses the nervous system - the system of cells, tissues, nerves, and organs that controls the body’s responses to internal and external stimuli. So while sipping a glass of wine before bed may help you nod off, the sedative effects wear off as your body metabolizes the alcohol, which may cause you to wake up in the middle of the night and have trouble falling back to sleep. Alcohol has also been shown to interfere with the body’s natural 24-hour biorhythms, causing blood pressure to rise and heart rate to race at night when it’s normally calm and relaxed. You don’t have to give up that evening cocktail entirely to achieve sound sleep - just try to avoid alcohol within two to three hours of bedtime.

20. Get your exercise. While scientists don’t yet understand why, aerobic exercise has been proved to help you fall asleep faster at bedtime, spend more hours in deep sleep and wake up less often throughout the night. At the same time, vigorous exercise can act like a stimulant (which is a great daytime energiser), so schedule your workouts in the morning or afternoon, when you need a boost the most.

21. Follow the 15-minute rule. If you can’t fall asleep, or if you wake up and can’t get back to sleep within about 15 minutes, get out of bed and do something relaxing that will help clear your head, such as reading, meditating, or knitting (but not watching TV or surfing the Web). Then, once you feel sleepy again, go back to bed. If you stay put and fret about being awake, you’ll only make yourself more anxious - and less likely to catch the z’s you need.

22. Write down your worries. During the day, jot down any stressors that are weighing on you. Then, do some mental problem-solving before your head hits the pillow or, if you’re falling short on solutions, tuck your list away and resolve to brainstorm ideas during your morning shower or commute to work.

Just knowing you’ve established a plan for tackling your to-do’s will make you feel like you’ve made some progress, allowing you to relax, drift off - and wake up the next morning ready to take on the day.

•

Abridged from Redbook Magazine, via www. webMD.com To see references for many of the claims made in this article, see www.redbookmag.com/your/ never-feel-tired-yl

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promotion

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promotions

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

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

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

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

Please phone 02 9229 4003.

Call for hep C genetic study volunteers The Storr Liver Unit at Westmead Hospital is recruiting hep C patients 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

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My NSW inte C, b syst

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If yo rega 040 z31

To organise a time to speak to a volunteer phone

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

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21/08/2007 2:12:16 PM

halc

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 Attorneys and Enduring Guardianships.

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

Making sense of hepatitis C My name is Paul Simpson, I am a PhD student at the Uni of NSW conducting research on hepatitis C. In particular, I am interested in how people make sense of living with hepatitis C, be that though the help of one’s family, friends, the health system or associations like the Hepatitis C Council of NSW.

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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

WEBSITE The Hepatitis C Council of NSW website 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.

I would like to interview people living with hepatitis C who are members of the Hepatitis C Council of NSW. Interviews will consist of asking participants to talk about their thoughts and feelings when they were first diagnosed with hepatitis C, as well as participants’ views of living with hepatitis C now.

Interviews are expected to run for an hour and can be held at a place convenient to you. Complete confidentiality will be upheld at all stages of the research process. Participants will be given $20 to cover for any transport costs.

If you would like to participate, or have any questions in regards to the study please feel free to call me on 0406 053 745 or alternatively email me at z3156101@student.unsw.edu.au •

Paul Simpson

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

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my story

members news

Heroin, jail and hep C

P

eople often say that if heroin and jail is your way of life, then hep C will eventually follow. My husband was heroin dependent for 16 years and spent 10 years of his life in jail. Seven of those years were consecutive.

After two years in jail, he found out he had contracted hep C, the most likely way was through having jail tattoos done or blood transfer through fighting, as he had never shared a needle in his life.

At the time the drug interferon was a relatively new treatment for hep C and was being tried in various combinations with other treatment drugs. He spent six months of intensive combination therapy with interferon (one of the many treatments that were being tried) involving six tablets a day and three injections a week into his abdomen.

The treatment was not without side effects, including severe weight loss, aching bones, insomnia, headaches and severe nausea. Four months into the treatment, the doctors were seriously considering terminating the treatment, due to the intense side effects it was having.

My husband decided (and convinced the doctors) to let him continue with the treatment and it worked.

After six months of treatment, the test results came back completely clear. Subsequent test results show that he is totally hep C free.

Ten years later, he is still off heroin, out of jail and hep C free.

Name withheld, NSW.

Membership

You are vital to us - We are here for You

At 30 June 2007 we had 780 members. We hope that many more people from our affected community will be able to join the Council and help support others with hepatitis C.

Member News . . . .

In your Spring edition of Member News, please watch for:

•Sponsorship to Symposium in Melbourne - we are offering sponsorship for two

current community members of the Council to attend the 15th National Symposium on Hepatitis B & C on Saturday 17 November 2007 in Melbourne. How to apply and more details are available in Member News . . . check your letterbox

•Getting to know your board - this time, we profile our IDU representative.

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research update Many with haemophilia and Impact of reduced heroin hep C develop end-stage availability on patterns of liver disease drug use, risk behaviour and HCV incidence in NSW HOLLAND - Nearly one-fifth of haemophilia patients with chronic hepatitis C virus (HCV) infection will eventually develop end-stage liver disease (ESLD), according to a report in the May 1st issue of Blood.

Dr Eveline Mauser-Bundschoten from University Medical Centre Utrecht, The Netherlands, and associates assessed the occurrence of ESLD in 847 such patients who were infected with HCV between 1961 and 1990 and were followed until 2005.

The authors report that after a median follow-up of 27 years, 19 per cent of the patients had spontaneously cleared HCV and 81 per cent remained chronically infected.

After 35 years of infection the cumulative incidence of ESLD was 17.1 per cent of all patients with chronic HCV infection, compared with only 2.1 per cent of patients who spontaneously cleared HCV, the results indicated.

“The cumulative incidence of ESLD was far higher in patients coinfected with HIV (35.1 per cent) than in HIV-negative patients (11.5 per cent),” the researchers note.

Of the 70 patients with chronic HCV infection who developed ESLD, 58 had never been treated with antiHCV therapy and 12 were unsuccessfully treated.

During follow-up, 199 patients died, including 73 from HIV/AIDS, 55 from liver disease, and 71 from other causes.

Dr Mauser-Bundschoten and colleagues conclude that, with longer duration of HCV infection, the risk of ESLD is emerging in patients with inherited bleeding disorders. “Future studies must be performed to study the effect of interferon-based regimens on the development of ESLD,” the investigators say.

AUSTRALIA - In early 2001, Australia experienced a sudden and dramatic reduction in the availability of heroin. Research examining the impact of the reduction on drug-related harms has yielded a conflicting picture.

The current study uses data from a prospective cohort study of 368 anti-HCV negative injecting drug users (IDU) to examine patterns of injecting drug use, risk behaviours and HCV incidence before and after the reduction. The proportion of participants mainly injecting heroin declined sharply from 74 per cent to 47 per cent after the onset of the reduction and continued throughout 2001.

There was marked shift to other drugs, mainly cocaine and amphetamine. Cocaine injectors had the highest risk profile and the highest incidence of HCV (82.6 per 100 person years).

While HCV seroconversions increased by year, this increase was not statistically significant. We observed a reduction in heroin injection and a concomitant increase in cocaine injection and a significant association between cocaine injection and incident HCV infection during a period of reduced heroin availability.

Results suggest that attempts to suppress drug markets by manipulating availability may result in collateral damage in the form of drug-related harms, indicating a need for more sophisticated understandings of the potential trade-offs involved in attempting to suppress the supply of illicit drugs.

Lisa Maher, et al. Drug and Alcohol Dependence, Volume 89, Issues 2-3, 10 July 2007, Pages 244-250.

Blood 2007;109:3667-3671.

Many people say in our previous readership surveys that they want to see 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 particular research topic.

For consensus opinion on hep C matters, please refer to hep C booklets, manuals and other texts. To clarify any medical terminology, or for further information, please speak to your doctor or specialist, or phone the NSW Hep C Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). ED

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research update Progression to cirrhosis: an age-dependent process?

FRANCE - Age at infection is known to be associated with disease progression rate in people with chronic hep C. The aim of this study was to assess when cirrhosis is expected to occur according to host and viral factors.

Fibrosis progression was studied in 247 naive HCV patients using multiple regression analysis. The expected age at cirrhosis was calculated for each patient.

Progression rate was 0.13, 0.14, 0.27, and 0.36 U of fibrosis/year for patients with age at infection <19, 20–24, 25–36 and >37 years, respectively. Age at infection above 37 years was independently associated with fast progression.

Body mass index >25 kg/m2 and alanine aminotransferase>3 × ULN are also possibly associated with faster progression. Based on progression rates, the expected age at cirrhosis is 65.4, 64.6, 64.8 and 69.4 years for age at infection <19, 20–24, 25–36, >37 years, respectively.

Conclusion: Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis. A specific active monitoring and therapeutic approach should be adopted in older patients to prevent progression to cirrhosis and its complications.

Pierre Pradat, et.al. Liver Int. 2007;27(3):335-339.

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Public opinion on NSPs AUSTRALIA - Despite evidence for their effectiveness, harm reduction services such as needle and syringe programmes (NSPs) are highly vulnerable to perceptions of community disapproval. This paper reviews Australian research on community attitudes to harm reduction services and its impact on research, policy and practice.

The literature on community attitudes to NSPs in Australia comprises a small number of representative national samples and surveys of local communities affected by specific services.

Despite these extremely limited data, negative community attitudes are often cited by policy-makers and health professionals as a primary constraint on policymaking.

The main finding of this literature review is that community perceptions of NSPs are largely positive. Also, support for NSPs was not synonymous with condoning drug use. The failure of policy-makers and politicians to recognise positive community attitudes to NSPs has led in some instances to hasty political responses to adverse media reports, including the closure of services.

This literature review showing positive community attitudes to harm reduction services should embolden researchers, practitioners and policy-makers to challenge such reactionary responses. Further, this evidence should be used in countering negative publicity surrounding these services.

Treloar C, Fraser S. Public opinion on needle and syringe programmes: avoiding assumptions for policy and practice. Drug Alcohol Rev 2007;26:355-361.

Taribavirin & peg interferon tested for hep C USA - Pegylated interferon plus ribavirin can cause anaemia.

Taribavirin, a ribavirin prodrug, has shown a lower incidence of anaemia. We sought to determine the efficacy and safety of taribavirin vs. ribavirin combined with peginterferon.

This phase two open-label study randomised 180 people with chronic hep C to receive pegylated interferon alfa-2a 180micrograms/ week plus taribavirin 800, 1200 or 1600mg daily or ribavirin 1000 or 1200mg daily.

The proportions of people with undetectable HCV RNA at 12 weeks did not differ significantly between taribavirin and ribavirin.

The highest proportion of patients with undetectable HCV RNA at end of treatment and at follow-up occurred in both the taribavirin 1200mg group (63 per cent and 37 per cent) and ribavirin group (62 per cent and 44 per cent).

Fewer patients on any dose of taribavirin had severe anaemia than those on ribavirin (4 per cent vs. 27 per cent).

The researchers concluded that given with interferon, taribavirin produced SVR rates comparable to those of ribavirin, with a lower occurrence of anaemia.

Virological response and safety outcomes in therapy-naive patients treated for chronic hepatitis C with taribavirin or ribavirin in combination with pegylated interferon alfa-2a: A randomised, phase two study. Gish, R.G. et al, (Jul 2007), J.Hepatol., Vol 47, Issue 1, Page 51-59.

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research update Giaconda announces clinical trial for Hepaconda AUSTRALIA - Australian drug company Giaconda announced its phase 2a clinical trial of Hepaconda for the treatment of chronic hep C (genotype 1) which is seen as refractory to current therapy.

Hepaconda is a combination of bezafibrate and chenodeoxycholic acid, both of which have demonstrated activity against HCV as single compounds, according to Giaconda.

The company said it believes the combination of bezafibrate with chenodeoxycholic acid may offer a synergistic advantage over current treatment.

The clinical trial is a two-center, open-label, prospective study of the efficacy and safety of the treatment in subjects diagnosed with HCV genotype 1 who have failed standard therapy.

The primary end points of the trial are to obtain a virological response and a reduction in viral load at three months and six months. The secondary objectives are to obtain clinically significant improvements in elevated liver function tests at three and six months and to obtain an acceptable safety profile.

Abridged from http://fdanews.com (25 June 2007) via HCV Bulletins NB: we usually publish only research updates from medical journals. This one came from a company press release but we have printed it as it is an Australian research initiative.

ED

Does outcome of hep C vary with genotype?

UK - It is currently uncertain whether differences in the natural history of hep C can be explained by differences in the infecting HCV genotype. The aim of this study was to investigate whether the HCV genotype might influence the clinical outcome of infection.

Study serum samples were taken from 749 individuals enrolled into the UK HCV National Register from which data on clinical outcomes were extracted. HCV-RNA-positive specimens were genotyped and HCV-RNA-negative specimens serotyped.

Logistic regression analysis was used to investigate the independent effect of HCV type on viral clearance by comparing patients who were HCV RNA negative (n = 86) with those who were HCV RNA positive (n = 508). The same method was used to investigate whether HCV genotype was associated with histological stage of liver disease.

HCV type 1 infection was more often HCV RNA negative, suggesting that spontaneous clearance may occur more commonly with this type.

Among the RNA-positive infections, type 1 infection may be more aggressive than types 2/3.

HE Harris, et.al. The HCV National Register Steering Group, J Viral Hepat. 2007;14(3):213-220.

NB: The differences above were probably very slight. We have not found Australian experts mentioning genotype as a significant predictor of long term outcome (prognosis). ED

Coffee linked to less liver cancer SWEDEN - Increased coffee intake appears to lower the risk of developing liver cancer, according to findings published in the May 2007 issue of Gastroenterology.

“Data on potential beneficial effects of coffee on liver function and liver disease have accrued over the last two decades,” doctors Susanna C Larsson and Alicja Wolk, from the Karolinska Institute, Stockholm, Sweden, write.

The researchers conducted a meta-analysis of epidemiological studies to quantitatively assess the association between coffee consumption and the risk of liver cancer. A total of four cohort and five case-control studies were included in the meta-analysis, involving 2260 cases and 239,146 non-cases.

An inverse association between coffee consumption and liver cancer risk was observed in all of the studies. The association was significant in six of the studies.

The investigators note that an increment of two cups of coffee per day was associated with a 43 per cent reduced risk of liver cancer.

“A protective effect of coffee consumption on liver cancer is biologically plausible,” the researchers point out.

“Coffee contains large amounts of antioxidants, such as chlorogenic acids, and experimental studies in animals have demonstrated an inhibitory effect of coffee and chlorogenic acids on liver carcinogenesis.”

Gastroenterology 2007;132:17401745.

Also see ED 56, p49; ED54, p45; ED52, p43. ED

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research update HCV-infected livers better benefit liver transplant USA - Donor livers with hepatitis C virus (HCV) appear to offer a slight survival advantage over uninfected organs in hep C positive patients who are in need of a liver transplant.

These organs are traditionally thought to be suboptimal, because they do not meet the criteria established by the United Network for Organ Sharing (UNOS) for donor livers, so this finding should widen the pool of livers available for transplantation, investigators announced at the US Digestive Disease Week 2007.

“There are approximately 6,000 liver transplants done in the US every year and about half are for HCV-related cirrhosis,” principal investigator Dr Paul Kwo of the Indiana University School of Medicine in Indianapolis said as he presented his team’s findings of a case-control study of patients who received extended-criteria donor livers.

The investigators used data from UNOS, the transplant centre registry and the on-site donor data chart to identify 38 HCV-infected recipients of HCV-infected livers. The outcomes were compared with those of 76 liver transplant recipients of donor livers meeting strict UNOS criteria.

Dr Kwo said demographics were similar between the extended criteria group and the standard matched donor-recipients.

One-year survival rates favoured recipients of HCVinfected livers at 97 per cent compared with 87.5 per cent, for recipients of organs meeting UNOS criteria, Dr Kwo reported.

Significantly less fibrosis developed in HCV-infected organs at one year post-transplant, with a 26 per cent increase compared with a 69 per cent increase in scarring with UNOS-approved organs.

“The survival rates are at least equivalent, but we saw a trend toward improved survival with HCVinfected organs ... We think HCV-positive organs can be considered first-line therapy for HCV-positive recipients.”

“HCV-infected organs are under-utilised, but they are over-represented in the donor pool,” Dr Kwo told Reuters Health. The finding that HCV-infected organs can be used will widen the donor pool, he added.

Injection behaviour not sexual contact accounts for couples’ hep C risk USA - Injection behaviour, rather than sexual contact, accounts for clustering of hep C infection in heterosexual couples, according to a report in the Journal of Infectious Diseases.

The role of sexual transmission of HCV has remained controversial because of inconsistent findings across studies involving heterosexual couples, Dr James McMahon and colleagues explain.

Dr McMahon from National Development and Research Institutes, New York, and associates applied multilevel dyadic modelling techniques to data collected from drug-using heterosexual couples to assess multiple risk factors for HCV infection at both the individual and couple level.

Four significant risk factors for anti-HCV positivity remained in a final multivariable model: an individual’s older age; history of ever injecting illegal drugs; history of ever receiving a tattoo; and a couple’s recent drug injection, moderated by a partner’s antiHCV-positive status.

“Our results indicate that HCV infection is not associated with sexual risk behaviour among members of long-term heterosexual couples,” Dr McMahon and his associates conclude. “This finding must be qualified by the fact that the sample consisted entirely of drug users - a population with very different characteristics and levels of risk than other populations.”

“Although prevention programs aimed at decreasing unsafe injection practices in high-risk communities have met with some success in recent years,” the authors add, “our findings indicate a need to expand HCV prevention efforts to address the injection practices of primary heterosexual couples.”

“Interventions to prevent HCV transmission [among people who inject] including the reduction of injecting in general, will be the most effective way to combat the HCV epidemic,” writes Dr Judith A Hahn from University of California, San Francisco/San Francisco General Hospital, in a related editorial.

J Infect Dis 2007;195:1572-1581,1556-1559.

Abridged from www.medscape.com

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research update Hepatitis C and lymphoma link USA - Non-Hodgkin’s lymphoma (NHL) is a hard-to-cure cancer of the immune system which usually affects middle aged and older people and for some reason its incidence has been rising in the population. Ozone layer depletion was thought to be associated through ultraviolet exposure - but that’s probably a furphy and some have blamed pesticides.

Now hep C has been linked and the good news may be that treating the hep C may help the lymphoma.

You catch hep C largely through contact with infected blood, so IV drug use and things like unhygienic tattooing put you at risk. In addition to the liver damage that hep C can cause, it seems to be linked to an overdrive of the immune system, increasing the proliferation of antibody and white cell producing tissue.

A comparison of 146,000 people with hep C infection to 570,000 people who didn’t have it, has confirmed an increased risk of non Hodgkin’s lymphoma by around 30 per cent over five years, and a tripling of another form of lymphoma.

The implications could be that treating hep C more aggressively might prevent more than liver damage, and that looking for hep C in people with lymphoma and then treating it might help address the cancer.

Giordano TP et al. Risk of nonHodgkin’s lymphoma and lymphoproliferative precursor diseases in US veterans with hepatitis C virus. Journal of the American Medical Association 2007;297:2010-2017.

Abridged from www.abc.net.au/ health/minutes (9 July 2007)

Hep C linked to severe kidney disease

Thyroid cancer in chronic hep C patients

USA - Adults with chronic hep C are at increased risk for developing end-stage kidney disease, a serious disease that requires lifelong dialysis or kidney transplantation, investigators report in the Archives of Internal Medicine.

ITALY - This recent study prospectively investigated prevalence and features of thyroid cancer in people with chronic hep C in comparison to two samples from the general population with different iodine intake.

“Research has shown that the liver is not the only organ affected

by HCV,” Dr Judith Tsui and her associates note. “Still, the impact that this virus has on kidney disease has not been well defined.”

Researchers studied the prevalence of thyroid cancer in 308 unselected HCV+ patients in comparison to two population-based, genderand age-matched control groups: 1) 616 subjects from an iodine deficient area; 2) 616 subjects from an iodine-sufficient area.

In this study, Tsui, from the Veterans Affairs Medical Centre in San Francisco, and her team linked data from Medicare, the Department of Veterans Affairs, and the United States Renal Data System. Their goal was to see if HCV infection was associated with end-stage kidney disease.

The study group included 474,000 veterans who were tested for HCV within one year of a having blood levels of creatinine measured, a simple test of kidney function.

Of these subjects, 53,000 tested positive for HCV. HCV infection nearly tripled the risk of end-stage kidney disease, the results indicate. However, this finding was only apparent in subjects younger than 70 years of age and was most pronounced in those with normal or near-normal kidney function when the study began.

“Patients with HCV are more likely to experience rapid decline in (kidney) function,” the authors conclude.

Judith I. Tsui, et.al. Association of Hepatitis C Seropositivity With Increased Risk for Developing Endstage Renal Disease. Arch Intern Med. 2007;167:1271-1276.

Thyroid status was assessed by: measurement of circulating thyroid hormones and auto-antibodies, thyroid ultrasonography, and when indicated, fine-needle aspiration cytology.

Circulating thyrotropin, anti-thyroglobulin, and antithyroperoxidase antibodies levels, and the prevalence of hypothyroidism were significantly higher in HCV+ patients). Six patients with papillary thyroid cancer were detected among HCV+ patients, whereas only one case was observed in the control groups.

In HCV+ patients, 83 per cent with thyroid cancer had evidence of thyroid auto-immunity vs 31 per cent of the other HCV+ patients.

These data suggest a high prevalence of thyroid papillary cancer in HCV+ patients, overall in presence of thyroid auto-immunity; careful thyroid monitoring is indicated during the follow-up of these patients.

Thyroid Cancer in HCV-Related Chronic Hepatitis Patients: A CaseControl Study. Antonelli, A. et al, (May 2007), Thyroid, Vol 17, Issue 5, Page 447-451.

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interferon-based therapy Peg Interferon alpha & 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 weeks 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 already be pregnant nor 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 already be pregnant.

3 Age: people must be 18 years or older.

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

Duration & 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.

Alter

Liver biopsy no longer a general requirement for treatment

Treatm to hav specia of clin C:

From 1 April 06, 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 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.

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 in the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.

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complementary therapies Complementary therapies 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).

NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: •

a nurse educator/counsellor for patients

•

24 hour access to medical advice for patients

•

an established liver clinic

•

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 jails for women) and various clinics for monitoring ongoing treatment.

•

HCCNSW (this information is reviewed by the Commonwealth Dept of Health prior to publication).

Good results have been reported by some people using complementary therapies while others have found no observable benefits. As with any treatment, it’s important to remember that wrongly-prescribed medicines can be harmful.

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side-effects (see Ed 15, p 6). A similar trial but on a larger scale was carried out in the NSW Northern Rivers region (see Ed 24, p 8). Currently, a trial of particular herbs and vitamins is being carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see Ed 45, p 9).

Some people choose complementary therapies as a first or a last resort. Others may not use them at all. 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: •

Has the practitioner considered all relevant diagnostic testing?

•

Has your practitioner consulted about your hep C condition with your GP or other health care providers?

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Is the treatment dangerous if you get the prescription wrong?

•

How has their complementary therapy helped people with hep C?

•

What are the side-effects?

•

Is the practitioner a member of a recognised natural therapy organisation?

•

How much experience do they have working with people with hep C?

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How have they measured the health outcomes of their therapy?

•

How do they aim to help you?

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 your natural 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 NSW Hep C Helpline (see p52) for more information and the contact details of relevant professional associations.

•

HCCNSW

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support / info services NSW Hep C Helpline

Family Drug Support

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 those issues important to you. We also provide referral to local health care and support services: • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers)

FDS provides assistance to families to deal with drug issues in a way that strengthens relationships and achieves positive outcomes. Phone FDS on 1300 368 186.

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 jail phone, or by calling the numbers above.

Advice on food & 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, call the Dietitians Association of Australia: 02 6282 9555 or 1300 658 196 or www.daa.asn.au General Practitioners It is important that people find a well-informed GP who can support their long-term health care needs.

A doctor should be able to review and monitor a person’s 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 people to doctors and other health care workers in their area who have been involved in hep C training.

Alcohol & other drug services People who inject drugs and want to access peerbased info and support should 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/alcohol 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.

Family & relationship counselling If hep C is impacting on your family relationships, it may be wise to seek family or relationship counselling. To find out more, contact Relationships Australia on 9418 8800 or 1300 364 277.

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Sexual health clinics Although hep C is not classified as a sexually transmissible disease, staff at these clinics can offer a range of services including pre- and post-test discussion and HCV blood tests. They are listed in your local phone book under ‘sexual health clinics’. If you are concerned about confidentiality, these clinics do not need your surname or Medicare card, and 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.

Other support & counselling Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. They offer short and long-term counselling, information, support and advocacy to affected people and their families and/or carers.

Traids services are free and confidential on either a face-to-face or telephone basis. They also run support groups and have a regular newsletter. Current hep C information is available. For more information, phone 02 9843 3143 (Traids have a call-back policy for NSW regional callers).

Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) works with culturally and linguistically diverse individuals and communities to achieve better health and wellbeing in relation to HIV/AIDS and hep C, and to encourage and support health services working in these areas to respond appropriately and equitably. To access hep C information in languages other than English and for more details, phone 9515 5053 or 1800 108 098 or visit www.multiculturalhivhepc.net/ Alternatively, the Hep C Helpline also distributes information resources in several various languages.

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support / info services Legal advice

Northern Rivers Liver Clinic Support Group

The HIV/AIDS Legal Centre (HALC) also 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

An opportunity for people contemplating treatment, undergoing treatment and for those who have completed treatment to get know each other. The Liver Clinic invites you to come and join in a facilitated, relaxed and informal monthly discussion and to join us for a light lunch afterwards. For more information, please phone 6620 7539.

Hep Connect Peer Support Program 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).

Hep C Australasia This Australasia-wide online internet community has over two hundred members. 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 Hep Chat, the weekly radio program of the Hepatitis C Council of Victoria, can be heard across Australia on your computer at home or work, and on your mobile.

Hep Chat started in April 2001 and remains the only regular radio program that focuses on hep C and the health, welfare and drug issues that surround it in Australia. The program streams live every Thursday morning between 10.30 and 11am, (AustralianStandard-Time). To listen, go to 3CR Radio’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. Visit www.hepcaustralia.com.au Hunter Hepatitis C Support Services A service that is open to all people of the Hunter living with HCV and is linked to a team of health care professionals specialising in hep C treatment & care.

Based at John Hunter Hospital, Lookout Rd., New Lambton. For information, please contact Gabrielle Murphy on 4922 3429 or Tracey Jones on 4921 4789.

Port Macquarie Hepatitis 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.

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. People from any area are welcome. From 7pm to 8.30pm, the 1st Thursday of each month (except Dec & Jan) at Parramatta Health Services, Jeffery House, 158 Marsden St, Parramatta.

There is no parking on site. It is a 10 min. walk from Parramatta station. For information, please contact Traids on 9843 3143 or Susan on 9840 4110.

Westmead Hep C Information Night Our Information Nights are organised for people with hep C, families, friends and interested others. Our speakers talk about various aspects of hep C such as: research about the virus, transmission, treatment and symptom relief. People who have hep C or who have successfully undergone treatment often speak of their experiences, and we also allow time for questions and answers. Supper is generally provided as we know this can be an awkward time for some people. 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 Maria on 9843 3143 or Susan on 9840 4110.

Nepean Hepatitis 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 Jo on 4734 3466.

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noticeboard Our loan library

Did you know?

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 borrowers are required to pay return postage.

that the following factsheets are freely downloadable from our website...

Videos/DVDs The Big Combo (HCCNSW, 2002): Approx. 20 mins; two people 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): Approx. 30 mins; real-life stories of people’s experiences with hep C and interviews with health specialists. Suitable for individuals and health workers.

English. (Council members only)

Blood & organ donation

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. (Council financial 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. (Council financial members only) Cassette Tapes Hepatitis C: A Brief Introduction (HCCNSW, 2000): The Council’s comprehensive brochure on audiotape for people with reading difficulties. NB: treatment information has changed slightly since 2000. English.



HCCNSW

Antibody testing Australian snapshot 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

Complaints If you wish to make a complaint concerning our products or services, please visit our website for more information.. www.hepatitisc.org.au Or telephone the office (see page 3 for contact details)

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Tattooing Test counselling Treatment consent Treatment response Treatment side effects Workplace issues

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membership form / renewal / tax invoice An invitation to join / rejoin the Council

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

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

Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300

Postal address

Or fax: 02 9332 1730

Suburb/town

About the Council

State

Postcode

Home phone

Email:

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 Management Committee, 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 rights 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

Membership 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.

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.

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.

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.

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

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

May we list you on our referral database?

Free copies of The Hep C Review required

2 5 10 20 50 80 160

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

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

May we list you on our referral database?

Free copies of The Hep C Review required

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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

amount received

receipt number

date entered

membership number

info pack sent?

staff initials

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