Hep Review 55

Tripling hep C treatment capacity... $4mill boost for hep C treatment Improved treatment will help counter burden Liver disease set to wreak havoc for years Expanding models of hep C treatment The Hep C Review

Edition 55

December 2006

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editor’s intro

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n introducing this edition, I’d like to reflect on the 20-year celebration of Needle & Syringe Programs in Australia (see p10). Reports commissioned in Australia and overseas continue to generate evidence and emphasise the success of NSP as a valuable response to HIV, hep C and other bloodborne illnesses.

Although Australia’s official drugs position is built on a harm minimisation platform, threats do exist to NSP and other harm reduction initiatives in Australia. Let’s hope that over the next 20 years, NSP continues to enjoy broad political and community support. It remains our frontline defence against bloodborne viral infections which have ravaged many overseas countries.

Hepatitis C has had a worrying impact here. Its cost to the Australian community is spelt out in the article, Estimates and Projections executive summary (p19). It makes for sobering reading and highlights the need for more effective prevention initiatives and treatment options. In this regard, it is heartening to see good news on Roche’s and Vertex’s treatment developments (p6).

In this edition, Expanding Models of Hep C Treatment (p23) continues the call for expansion of current treatment initiatives. The Council advocates for high quality treatment services and we promote greater uptake of treatment through hospital liver clinics. Further, we push for development of additional models so that more people have easier access to treatment - general practitioner treatment prescribing being a good example of a current pilot project. Another project on the drawing board involves the delivery of hep C treatment through AOD agencies, especially methadone clinics.

In this edition we carry news on the Carolyn Lang study carried out at the University of Queensland.

Exploring people’s experiences, Carolyn discovered the existence of symptom ‘clusters’. Lisa Waller’s personal story, Weeping at Music (p30) introduces the subject and our following article, Discovery of Symptom Clusters (p33) provides detail on this innovative research project.

We wish you ‘good reading’ and hope that you enjoy Edition 55. We also wish you a very happy Christmas and end-of-year break. The Hep C Review team will be back in 2007 working hard to provide you with the news, information and support which keeps you up-to-date with hep C developments.

Paul Harvey, Editor

The Hep C Review

Edition 55

Quoting from our founding document, the Council’s constitution, we are to act as advocates for people affected by hep C, and represent their interests on relevant bodies.

As a community based agency it is our intention, as it is the expectation of our communities of interest, that we will advocate on their behalf: both to help improve the quality of their lives and also to help prevent HCV transmission.

Client advocacy We define client advocacy as representing and/or acting on behalf of an individual, regarding the resolution of a particular hep C-related issue.

We do not see client advocacy as being the same as case management however. Case management is the process of providing a client with ongoing, practical assistance for a range of life issues whether related to hep C or not. Clients requiring services beyond hep C-related advocacy will be referred to appropriate services. Referral is a major part of our client advocacy approach.

Our level of involvement for individual client advocacy with any particular issue, beyond oneoff action, will vary according to a number of factors, such as complexity of the issue, the Council’s current capacity and likelihood of a useful outcome.

Professional judgment by project staff is used in each individual case. Confidentiality and privacy are paramount, and we always seek consent from the individual before we advocate on their behalf. Records are kept in accordance with our policies and procedures.

Examples of client advocacy include: writing letters or speaking to individuals or agencies on behalf of people with hep C seeking help with housing or income support, early release of superannuation funds, disability support claims, gaining appointments with nursing staff in the correctional setting, or action regarding inappropriate or discriminatory behaviour in health or employment settings and the like.

Community advocacy Community advocacy, on the other hand, refers to actions designed to help meet the needs of a group of people within or our entire communities of interest, ie. people with, or affected by hep C. Quite often, client advocacy can become community advocacy, ie. if the issue or practice is widespread or likely to impact on a broader group of people. (continued page 35)

Cover page graphic from Yahoo or Google images

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Council keyhole - Advocacy

December 2006

acknowledgements Calling all members

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

We are funded by the NSW Health Department.

Hep C Review editor:

Tim Baxter Teresa Clonan Paul Harvey Louise Houtzager Stuart Loveday Lisa Waller

Look inside for your special Membership Page (p44).

Our 2006 membership year began on 1 March - we look forward to continuing to receive your renewals.

Paul Harvey

Editorial Committee:

HCR medical & research advisors:

Dr David Baker Prof Bob Batey Prof Yvonne Cossart Prof Greg Dore Prof Geoff Farrell Prof Sue Kippax Prof Geoff McCaughan Dr Cathy Pell Dr Ingrid van Beek Dr Alex Wodak

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

S100 treatment advisor:

Marcelle Noja (AGDHA) Proof reading: Prue Astill Thuy Van Hoang Emma Ward

Seeking your personal story

MARLTON comic:

Personal stories provide a very valuable balance to the many information articles that we carry in each edition. Overwhelmingly, they are written by people with hepatitis C but can be just as interesting when telling the story of family members or friends - the lived experience of health care workers would be equally interesting.

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

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

Articles should be between 400-800 words.

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

We seek diverse viewpoints, although articles considered unnecessarily inflammatory or vilifying will not be published.

The deadline for contributions to ED56 is 24 Jan 2007.

We’re really looking forward to receiving your articles.

ED

email:

Andrew Marlton

phone:

02 9332 1853

fax:

02 9332 1730

hccnsw@hepatitisc.org.au

website:

www.hepatitisc.org.au

postal address: PO Box 432 DARLINGHURST NSW 1300 AUSTRALIA Hep C Helpline:

1800 803 990 (NSW) 9332 1599 (Sydney)

Aside from HCCNSW editorial comment, views expressed in this magazine or within flyers enclosed with it are not necessarily those of the Hepatitis C Council of NSW. Neither are such views necessarily those of our funding body.

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

This permission does not apply to graphics or cartoons.

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

If you have any doubts, please contact us.

ISSN 1440 - 7884

The Hep C Review

Edition 55

December 2006

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contents News

My story

Salvo worker renews call for injecting room

6

Weeping at music

30

Roche’s R1626 goes to phase II study stage

6

Things for a carer to be aware of

36

Hep C and workload killing Chopper

6

My name is Sam

40

Vertex study shows good results

6

Act now to stop the spread of HCV

7

Hep C could cost New Zealand $350mill

7

Call for more people to sign up and become organ donors

39

Canada offer over blood scandal

8

Hep C Australasia

45

UK prisoners will get drug-taking kits

8

Acupuncture & hepatitis C

45

$4mill boost for hep C treatment

9

Volunteers needed for a peer support program

46

World Hepatitis Awareness Day

9

Have you recently contracted hepatitis C?

46

Shared banknote health warning to coke users

9

No crime increase near injection centre

10

New drug treatment for methamphetamine and cocaine addiction

46

NSP celebrates 20 successful years

10

Improved treatment will help counter burden

11

Drug use - key ingredient for hep C epidemic - continues unchanged

11

Diabetic cat brings needle case unstuck

12

Next generation PCR viral load testing

Promotions

Research updates Marijuana aids hep C therapy

47

African Americans have lower response rates to HCV therapy

47

12

Lifestyle changes and beliefs regarding disease severity in people with chronic hep C

48

One vial infects 16 heart patients in US

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Can sulphasalazine reverse liver disease?

48

Portugal’s injection centres and prison needle exchange

13

Colchicine may prevent hepatocellular carcinoma in people with hepatitis 49

Danger of internet pharmaceuticals

13

$31,000 for hep C firing

13

Hep C contamination of toothbrushes: myth or reality?

Dietary correction

13

Regular features

Women dying early from liver damage

14

Aerosmith frontman confirms hep C

14

Features Going ape: what happens to hep C research chimps?

15

Liver disease set to wreak havoc for years

18

Estimates & Projections executive summary

19

Hepatitis C: the hidden epidemic

20

Expanding models of hep C treatment

23

Tired all the time

24

Discovery of symptom clusters gives insight into hep C experience

33

Silver at transplant games

38

The Chinese puzzle that is complementary medicine

42

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The Hep C Review

Edition 55

December 2006

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Council keyhole - Advocacy

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Letters

5

Harm reduction poster

28

Hello Hep C Helpline (liver care)

41

Membership page

44

Interferon-based therapy

50

Complementary therapies

51

Support / info services

52

Noticeboard

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Membership form / renewal / tax invoice

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letters

Doing fine I am pretty lucky I think. I am doing okay - working three days a week, studying one day a week, learning the drums, looking after my son. I am taking both interferon/ribavirin and another drug (three injections a week) called GCSF which is to bring my neutrophils up (they were very low!).

Then I'm on 56 tablets a week which is 35 ribavirin and all the rest to manage all the symptoms!

jUZ, Melb Vic

Stories of courage and bravery I would like to thank the Council for the incredibly valuable support and information I have received over the last 10 years starting from the very first day I contacted the Helpline on 2 January 1996.

I had been diagnosed that very day and was crying my eyes out. I was put in contact with a wonderful counsellor who was able to steer me towards acceptance and inspire me towards a positive future. She was able to reassure me that life did not finish with this diagnosis.

Since then I have devoutly followed the articles and developments published in your magazine - which I have found to be very informative and of great comfort.

It worked for me I am no longer a sufferer of hep C, having been successfully treated with pegcombo therapy earlier this year. I became infected in 1991 from an unknown source and although the virus never made me ill, except for raised ALTs, I still suffered from the stigma that is hepatitis C. I am one of the lucky ones, only having to endure six months of treatment, as I was genotype 2b. It was hard going most of the time as I suffered both from anaemia and neutropenia and had a dose reduction of both interferon and ribavirin but I had a wonderful specialist in Brisbane who monitored me constantly via blood tests every two weeks. Even on the reduced half-dose I still cleared the virus and hope when I have my final blood tests in December, 2006, I will have attained a sustained viral response (viral clearance).

Becoming more informed and a poor liver biopsy result spurred me to go on combination treatment from mid 2004 to mid 2005. Miraculously this has yielded a negative PCR even up to a year following treatment so I am in effect, cured!!

Unfortunately, immediately after treatment finished and before I could enjoy the fruits of this accomplishment, I was struck down with a mystery fatigue state which has since been diagnosed as Chronic Fatigue Syndrome.

Whilst there appears to be no literature to support this, I believe that because CFS is thought to be caused by an overactivity of the immune system and that interferon treatment is of an immunological basis, then the combination therapy has at least contributed to my CFS condition.

However, at least I can rest easy, reassured that the condition of my liver will not deteriorate further and that in fact, it is quite likely that it will regenerate to some degree.

I have been a subscriber to your Council for many years and have found The Hep C Review very informative and helpful. I wish you all the best for the future and recommend to other sufferers to give combination therapy a go - it worked for me.

At some stage I would like to contribute my full story to your magazine. Over the years, I have found the personal stories of courage and bravery to be inspirational and very powerful. Although I really did not have a choice, the message I would like to share would be for people to have the treatment.

Beatrice, Bundaberg

Barry, Central Coast NSW

The Hep C Review

Edition 55

December 2006

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news Salvo worker renews Hep C and workload call for injecting room killing Chopper Australia - Victoria should follow Sydney's lead and introduce a supervised drug injecting centre, a Salvation Army worker says.

Salvation Army program worker Sally Finn pointed to the success of the supervised injecting room, which opened five years ago in Kings Cross.

Ms Finn was speaking at St Kilda for Overdose Day, which she founded six years ago to recognise the suffering caused by drug overdose. Between 1988 and 2004, over eight and a half thousand people in Australia died from heroin overdose.

While the rate of overdoses had since declined, it was still vital to acknowledge those who had lost their lives or suffered permanent injury, Ms Finn said.

Abridged from The Herald Sun, 1 Sept 06, via www.dailydose.net

Roche’s R1626 goes to phase II study stage Switzerland - Roche announced in mid-October the start of the first phase II development study to evaluate R1626, their promising new polymerase inhibitor, for the treatment of hep C. The investigational drug has also been granted Fast Track status by the US Food and Drug Administration.

R1626 has been shown in an earlier study to have a strong antiviral effect against HCV. In the phase I study, the drug achieved significant reductions in viral load in chronic hepatitis C patients infected with the difficult-to-cure genotype 1 virus. In moving R1626 into phase II trials, Roche will evaluate the safety and antiviral effects of R1626 in combination with the current standard of care for hepatitis C, peginterferon and ribavirin.

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Abridged from www.earthtimes.org via www.hcvadvocate.org

The Hep C Review

Edition 55

December 2006

Australia - Mark "Chopper" Read has revealed he has hep C and has cancelled his road show with football identity Mark "Jacko" Jackson because of the debilitating illness.

New Idea magazine says doctors have told the 51year-old he faces a major health challenge over the next eight years - one which he attributes to sharing razors while behind bars.

Read told New Idea he has had to adopt a healthier lifestyle after the illness, and his workload, took him to the brink.

"I can't take it anymore. The workload was killing me. I'd be vomiting minutes before jumping on stage," Read says.

"I've also had to give up alcohol, which I haven't enjoyed because I'm a devout alcoholic," he added.

Abridged from Sydney Morning Herald, 9 Oct 06

Vertex study shows good results USA - Biotech drug developer Vertex Pharmaceuticals recently reported that its treatment for hepatitis C reduced the virus to undetectable levels in a vast majority of patients in early-stage clinical trials.

In one trial, investigators found that telaprevir, or VX-950, suppressed both wild-type and resistant variant of hepatitis C virus when combined with pegylated interferon.

Investigators also found that after 24 weeks of treatment in two early-stage clinical trials, 24 out of 26 patients did not have detectable levels of the virus, and that levels remained undetectable in some patients even after therapy was discontinued.

Abridged from http://biz.yahoo.com via www.hcvadvocate.org

news Act now to stop the spread of HCV Australia - New research shows 22,000 Aboriginal and Torres Strait Islanders are estimated to have hepatitis C and are four times more likely to be exposed to the hepatitis C virus than nonIndigenous Australians.

The report by the National Centre in HIV Epidemiology and Clinical Research - Hepatitis C Virus Projections Working Group: Estimates and Projections of the Hepatitis C Virus Epidemic in Australia 2006 - shows nationally there is an estimated 264,000 people living with hepatitis C and one additional person every hour across Australia is exposed to hepatitis C. Despite high treatment success rates of between 50 and 80 percent, a very low percentage of Aboriginal and Torres Strait Islander people access treatment. It is very difficult currently to access treatment in rural and remote areas.

"During National Hepatitis C Awareness Week we want to encourage Aboriginal people with hepatitis C to use this opportunity to find out more about hepatitis C, how it can be prevented and how it can be managed, said Ms Dea Delaney Thiele, CEO for NACCHO. "Our message is 'take control now'. Aboriginal people have much higher rates of liver disease and cancer from hepatitis than other Australians. Many of us would not know that we might have this infection."

Aboriginal people should consider being tested if they have: - Shared any injecting equipment even once - Had an unsterile tattoo or body piercing - Had an initiation ceremony performed where other people's blood has been present - Received blood or blood products prior to 1990 "The good news is nationally the number of new cases has fallen from 16,000 in 2001 to 10,000 in 2005 but we have to do more in the Aboriginal and Torres Strait Islander Communities to prevent new cases," said Troy Combo of the Australian Hepatitis Council.

Abridged from National Indigenous Times, 19 Oct 06 For more on the Estimates & Projections Report, see p19

Hep C could cost New Zealand $350mill NZ - Hep C affects an estimated 40,000 New Zealanders but only about 25 per cent know they have the disease. This is according to New Zealand’s leading liver transplant physician Associate Professor Ed Gane who says hep C is now the country’s leading cause of liver transplants and second leading cause of liver failure.

The cost to our health care system of not diagnosing or treating people chronically infected with hep C was projected to be AUD$350mill by 2020, Prof Gane said.

“There is, however, a solution to avoid the cost being this high and that is for people who are at risk of having contracted the virus to get tested so they can be treated if need be. Testing will also allow those with the virus to take precautions to avoid spreading the virus.”

The World Hepatitis Awareness Day theme this year is “Get Tested” and is an opportunity to raise awareness of the disease and encourage people at risk to be screened.

John Hornell, CEO of the Hepatitis Foundation of NZ, said early diagnosis and intervention for people with hep C lead to the best health outcomes.

“Recent advancements in treatment mean the disease has higher cure rates than was previously achievable.”

Mr Hornell said the difficulty with the disease was that many people with chronic hep C did not experience symptoms, or if they did, the symptoms were mild or non-specific.

“That is why we encourage anyone who maybe at risk of carrying the virus to get the diagnostic blood test, whether or not they experience symptoms, so they can receive any necessary treatment before the liver is irreversibly impaired or before they unwittingly transmit the virus to anyone else.”

For more information on hepatitis and patient support groups, people can visit the Hepatitis Foundation of NZ website: www.hepfoundation.org.nz

Abridged from www.scoop.co.nz via www.dailydose.net

The Hep C Review

Edition 55

December 2006

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news Canada offer over blood scandal

UK prisoners will get drug-taking kits

Canada - The recently elected Canadian government has announced a AUD$1.774bill compensation package for thousands of people infected with hep C from tainted blood.

UK - Prisoners will be given personal drug-taking kits under a controversial new scheme to tackle the spread of HIV and hep C in British jails.

The package will include thousands of people left out of a previous compensation agreement. Prime Minister Stephen Harper said it is for the forgotten victims of the tainted blood scandal.

More than 20,000 people were infected in the 1980s and 1990s when Canada did not use up-todate blood screening.

The Liberal government had been criticised over the past nine years by Mr Harper's conservatives and by some of the hep C litigants for only compensating those people who got the disease between 1986 and 1990.

In those years a comprehensive blood screening system was used in the US and could have been applied in Canada - but was not.

About 5,500 people were infected outside of the four-year-period covered by previous compensation.

More than 3,000 people have died. Many of the victims were haemophiliacs.

"Everyone who contracted this terrible disease will be treated fairly and compassionately," Mr Harper said.

Mr Harper said the amount of money each of the sufferers would receive would depend on the severity of their illness. He said he hoped the money would become available from 2007.

David Plater of the Canadian Haemophilia Society welcomed the compensation.

"Finally, a federal government stood up and said we are going to do something," Mr Plater said. "It was about reaching out to people that had been injured by a system that let them down."

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Abridged from http://news.bbc.co.uk/go/pr/fr/ -/2/hi/americas/5215332.stm via www.hcvadvocate.org

The Hep C Review

Edition 55

December 2006

Inmates at Craiginches Prison in Aberdeen, where drug-taking among prisoners was particularly high, will be the first to receive the kits. They include syringes, swabs, filters and a sharps disposal box.

The Scottish Prison Service (SPS) has confirmed that the pilot programme was planned for early next year, after a Glasgow Caledonian University report.

It concluded that prisoners regarded the drug problem in Scotland’s jails as unstoppable.

With the continued proliferation of illicit drugtaking in prisons has come a serious infection problem, which the Craiginches pilot scheme aims to address.

The SPS said yesterday that if the behaviour of prisoners taking drugs could not be changed, the service had a responsibility both to inmates and to prison staff to ensure their safety.

The SPS added that the kits would reflect needle exchange programs that existed in the community and would be modelled on similar schemes in the Republic of Ireland, Switzerland, Germany and Spain. These schemes have dramatically reduced HIV and hepatitis transmission rates A recent study in Canada claimed that giving drug kits to prisoners did not lead to an increase in drug taking or cause needles to be used as weapons The Home Office has given no indication that it will adopt the scheme for England and Wales if the pilot in Scotland proves successful.

Abridged from The Times, 21 Sept 06, via www.dailydose.net

news $4mill boost for hep C treatment Australia - The Beattie Government has invested an additional AUD$4 mill over three years to help provide better hep C treatment in Queensland.

Health Minister Stephen Robertson recently announced the funding saying it would finance the Shared Care Program - a partnership between public hospitals and general practitioners - to ensure a more coordinated approach to treatment and support for hepatitis C patients.

He said dedicated nurses and psychologists would also be recruited to support patients and liaise between their specialists and GPs. "The Shared Care Program provides joint treatment and care to help hepatitis C patients to complete the full 24 - 48 weeks of antiviral treatment for the disease."

Abridged from www.austhealthcare.com.au

World Hepatitis Awareness Day UK - To help raise awareness of hepatitis, October 1st was designated as World Hepatitis Day. On this day, individuals and organisations around the world undertook a variety of activities to increase the public’s knowledge of the risk factors for infection, educating those with hep C about how to get diagnosed and the treatment options available.

The major objective for the European Liver Patient’s Association this year was to mobilise European decision makers in hopes of getting them to encourage those at risk to ‘get diagnosed’ and ‘get tested’.

Shared banknote health warning to coke users UK - British experts are warning of a potential "health time bomb" from drug users snorting cocaine through banknotes, threatening to infect thousands with hep C. They fear that the sharing of banknotes by cocaine users will cause the numbers of those infected with hep C to soar. They are particularly concerned because eight out of 10 carriers don't know they have the virus.

The disease is carried through the blood, and users can easily fail to notice small traces of blood on their banknotes, which are then passed around a group. Without treatment, hep C can lead to chronic liver disease.

Professor Graham Foster, of St Mary's Hospital, London, said: "Sharing banknotes or straws is a significant risk factor that people need to be more aware of. Although the risk of contracting hep C through snorting is lower than through sharing a needle, it is still there."

He added: "We can detect levels of hep C for weeks after it has been on a surface, but infectious levels will only remain for a few hours, maybe more."

The trust has set up a campaign entitled What Not to Share, and is asking for donations to mark World Hepatitis Awareness Day today.

In an American study last year 4.7 per cent of people who sniffed or snorted cocaine or heroin tested positive for hep C.

Abridged from http://news.independent.co.uk via www.hcvadvocate.org

Sir Bob Geldof, Musician and Human Rights Campaigner was enlisted to help raise the profile of hepatitis C.

Abridged from www.elpa-info.org

The Hep C Review

Edition 55

December 2006

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news No crime increase near injection centre

NSP celebrates 20 successful years

Canada - Insite, a Vancouver safe injection site for drug users to inject under medical supervision, has not brought more crime or attracted drug dealers or users from other jurisdictions, according to a policecommissioned study.

Australia - Established at the Alcohol and Drug Service, St. Vincent’s Hospital in Darlinghurst on the 13th of November 1986, Australia’s first NSP was illegal - an act of reluctant civil disobedience as a result of numerous failed attempts to obtain government approval for a legal needle syringe pilot program throughout 1986.

The report by Irwin Cohen, a criminologist commissioned to examine the site for the Royal Canadian Mounted Police, is expected to be considered by Prime Minister Stephen Harper before he decides whether to renew a legal exemption for Insite.

Located in the Downtown Eastside slum between the downtown area and Chinatown, Insite is run by Vancouver Coastal Health Authority under a Health Canada exemption that recently expired.

"Some of the major concerns by those who were not in favour of supervised drug injection sites have not borne out - this idea that if we cluster drug users in a very specific area around this site you're going to have public nuisance increases, you're going to have crime increases," wrote Cohen.

Dr Thomas Kerr, an associate professor of medicine at the University of British Columbia and research scientist at the British Columbia Centre for Excellence in HIV/AIDS, said crime actually has declined in the drug-riddled Downtown Eastside since Insite opened there.

"We've published a study in the Canadian Medical Association Journal showing that the establishment of the site led to substantial reductions in public disorder," Kerr said.

Abridged from http://seattlepi.nwsource.com via www.hcvadvocate.org The Insite trial was recently given a 12-month extension. ED

Advocates argued that HIV had already spread extensively among gay men in Eastern Sydney and, unless effective prevention measures were introduced quickly and rapidly expanded, HIV would soon spread rapidly among and from injecting drug users to the general community.

Critics however, argued that needle syringe programs would ‘send the wrong message’ and only exacerbate injecting drug use in Australia.

The then NSW State Government decided to not prosecute the health staff involved in the pilot needle syringe program, but rather to review the results of the program and then establish a statewide NSP system based in pharmacies and the community within a few months. All other states and territories followed promptly. By 1988, a NSP system had been implemented across Australia.

According to a study commissioned by the Commonwealth Department of Health, NSPs in Australia had prevented by the year 2000 an estimated 25,000 HIV infections and 21,000 hepatitis C infections and saved between $2.4 and $7.7 billion.

Dr Alex Wodak, Director of St Vincent’s Hospital Drug and Alcohol Service said: “It is important to celebrate this success and to commemorate the many people who made it possible, including the senior police who worked closely with their health colleagues to make this a reality. We still need new harm reduction initiatives for new and emerging challenges. The threat of an HIV epidemic among and from injecting drug users in Australia still exists.

It has not - and will not – disappear.

Dr Alex Wodak, concluded: “This celebration is designed to strengthen public resolve and the political goodwill needed for our continuing battle to contain HIV and other blood borne viruses.”

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The Hep C Review

Edition 55

December 2006

ANCD press release via NSPforum

news Improved treatment will help counter burden Australia - The number of people with hep C receiving treatment needs to be trebled to put a lid on rising rates of liver disease, a report warns.

New projections from a government advisory committee suggested the number of people with chronic disease and cirrhosis would otherwise rise by 38% over the next decade.

Nearly 10,000 new cases were estimated in 2005, bringing the total number of people living with HCV antibodies to an estimated 264,000.

The report by a working party reporting to the Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis estimated that more than half of those with HCV had stage 1 liver disease and a further 17% had stage 2/3 or cirrhosis.

Of the estimated 197,000 people with chronic HCV infection, only around 2000 a year were accessing treatment.

Helen Tyrrell, Australian Hepatitis Council EO and a member of the working party, called for GPs to be allowed to initiate s100 prescribing as one strategy to expand treatment access.

Although the overall numbers of new diagnoses were declining - from an estimated 11,000 in 2001 to 9700 last year - rates of liver failure and cancer would increase unless more people with progressive disease were treated, she said.

"All those indicators are going in the wrong direction and the only way to deal with it is through treatment."

Drug use - key ingredient for hep C epidemic - continues unchanged Australia - Half of all people arrested by police are dependent on illegal drugs, researchers have found.

More than half of almost 3800 detainees interviewed for the Australian Institute of Criminology's 2005 Drug Use Monitoring project also tested positive to cannabis use.

About a quarter were found to have used methamphetamine - known as speed or ice - and 52 per cent had either used drugs just before their arrest or were looking to score.

Males made up 84 per cent of detainees who participated in the survey at seven sites around Australia, including two in Sydney.

Other results included: - 12 per cent of men and 17 per cent of women tested positive for heroin; - 2.5 per cent of all detainees tested positive to ecstasy; and - the number taking cocaine was described as "very small".

Researchers found what they called "a considerable overlap" between the heavy use of alcohol and illicit drug use.

They also found half of all detainees were classified as illegal drug dependent.

Abridged from The Sun Herald, 15 Oct 06

"The point at which we will be winning will be when the number of new infections is lower than the number of people being successfully treated," Ms Tyrrell said.

Abridged from Medical Observer, 13 Oct 06 More on the Estimates & Projections Report can be found on p19 & p23. The full report is accessible via www.hepatitisc.org.au/ resources/policyresources.html

The Hep C Review

Edition 55

December 2006

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news Diabetic cat brings needle case unstuck

Next generation PCR viral load testing

Australia - In July The Daily Telegraph heralded the apocalypse when it published photographs of a pile of "potentially deadly blood-tainted needles" dumped in a rubbish bin near the supervised injecting clinic in Kings Cross.

Australia - The Australian Therapeutic Goods Administration has approved an improved method that will allow hospitals to test hep C viral loads over a greater range with increased accuracy.

Cue calls for the centre to be shut, righteous anger from shock jocks and promises from the NSW Opposition Leader, Peter Debnam, that he would close the clinic if elected.

Then came the (less widely reported) riposte from the injecting centre: the syringes photographed by the Telegraph were not the brand they used, and there was no way they came from the clinic.

The Telegraph denied any wrongdoing, but the mystery of the needles, and how they came to be there, remained unsolved - until now. The syringes belonged not to a drug-ravaged junkie but to a diabetic cat named Trotsky, according to an expose in the Sydney City Hub. "While the issue raged in the media, Trotsky, an insulin-dependent cat, lined up for his next shot," reads the exclusive by Pam Walker.

Walker writes that Trotsky's master was moving house the day the damning photographs were taken.

He left unattended a disposal container half full of used syringes while he ducked back into his flat.

When he emerged, the needles were gone and he did not see them again until he picked up the Telegraph.

He did not know how they came to be scattered on top of a bin of a nearby restaurant.

"The vet has been supplying me with a big bunch [of needles] every visit. We go every two weeks to check Trotsky's blood sugar levels," he said.

We'd like to quote Mr Debnam in reminding Trotsky that: "The suggestion there's a safe way to take drugs is simply wrong ... funding should be used for treatment programs to help addicts get off drugs not to help them continue to take drugs."

Abridged from Sydney Morning Herald (4 Sept 06) via www.anex.org.au

The difference between the new extra sensitive PCR tests and currently available PCR tests is quite surprising. Previous viral load tests could measure from between 600 to 700,000 viral particles per mil of blood. The new range of viral load tests can measure anything between 43 and 69 million particles per mil of blood. This is a very useful development for management of patients receiving treatment for hep C. Doctors currently test viral load for people with genotypes 1 & 4 before treatment and at 12 weeks to see how well treatment is working. If the test results show low chance of success, the person is taken off treatment in order to avoid months of unnecessary treatment side effects. The accuracy of the new tests will probably lead to even earlier assessment at week four.

The new High-Sensitivity PCR tests are produced by a range of pharmaceutical companies and their use is rolling out across NSW hep C treatment centres.

One vial infects 16 heart patients in US USA - Sixteen patients in three unrelated clinics were infected with hepatitis C virus (HCV) when they were injected with a radiotracer prepared at a single nuclear pharmacy in Maryland, USA. The source of the outbreak appears to have been a patient with HIV, HCV, and hepatitis B co-infection whose blood was processed at the pharmacy for a radiolabeled white-blood-cell study 12 hours before the contaminated vial was prepared.

Investigators noted that this is the first known report of HCV transmission from contaminated nuclear medicine products.

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HCCNSW

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

news Portugal’s injection centres and prison needle exchange

$31,000 for job firing

Portugal - The Portuguese government has approved the establishment of community sites where injection drug users can inject themselves under supervision, and new measures call for needleexchange programs to be installed in prisons by 2008, AFP/Today Online reports.

The lawsuit said Hoffmann Oil fired the woman one day after she started her job, when it learned she had hep C. The company recruited the woman after a supervisor observed her doing a good job at another convenience store.

Advocates of injection sites say such services can help prevent needle sharing, which can spread HIV and hep C. The measures, which also call for increased methadone use to treat heroin addicts, are part of a broader program aimed at "reducing the consumption of drugs and diminishing their harmful social and health effects," according to a statement from the government.

USA - A convenience store employee who was fired for having hep C has been awarded AUD$31,000 in a lawsuit settlement, the US Equal Employment Opportunity Commission reported.

The company was afraid she would spread the virus to customers and other employees, the EEOC said, but the county health department said that wouldn't happen if she took normal precautions.

The US Centres for Disease Control has stated that the possibility of transmission is so low that employees should not be dismissed on that basis.

Similarly, in Australia it is unlawful to discriminate against people on the basis of hep C infection. Where someone thinks that they may have been discriminated against, the HALC legal service may be able to assist.

Phone the NSW Hep C Helpline for more info. ED

Portugal in 2000 decriminalised drug use but selling drugs remains illegal.

Abridged from www.medicalnewstoday.com via www.dailydose.net

Danger of internet pharmaceuticals UK - A warning about buying medications on the Internet comes from the story of a 64-year-old woman reported in The Lancet.

She turned up in the emergency department complaining she was losing sight in both eyes. The doctors found she had cataracts and high pressure inside the eyes with damage to the optic nerve which transmits visual information to the brain - a condition called glaucoma.

About four years beforehand, the woman had diagnosed herself with chronic fatigue syndrome and gone on the Internet to buy medications from Thailand. What they sent her was prednisolone, a steroid that she’d been taking constantly, making a train-wreck of her eyes as a well recognised side effect.

Abridged from abc.net.au/health via ABC Health Updates

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

Dietary correction Cutting down on dairy foods as stated in “At Risk of Putting On Weight” (ED54, p19) may increase your risk of osteoporosis (a condition where the bones lose calcium, become fragile and tend to fracture more easily).

Dairy foods are the best source of calcium which is not only needed to keep bones strong but required for muscles and nerves to work properly.

A more appropriate statement might have been "Substitute full fat dairy foods for low fat dairy".

It is not necessary to reduce dairy intake to lose weight or because you have hep C. Reducing total kilojoules in the diet whilst including low fat dairy foods is recommended. Three serves of dairy foods per day will provide most people with their average daily requirement for calcium.

Louise Houtzager, dietitian, Albion Street Centre, Surry Hills, NSW.

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news Women dying early from liver damage

Aerosmith frontman confirms hep C

Australia - Women are dying from liver disease in their 30s and 40s due to a rise in alcohol abuse among young women.

USA - Aerosmith frontman Steven Tyler says he was diagnosed with hep C three years ago, after having the illness for a long time without any symptoms.

More teenage girls are drinking at risky or high-risk levels and, if the pattern continues, there will a marked rise in alcohol-related deaths in coming years, research shows.

In an interview that was to air yesterday on Access Hollywood, the 58-year-old singer said the infection was now "nonexistent" in his bloodstream after 11 months of treatment, including the drug interferon.

The medical director of drug and alcohol services at Royal Prince Alfred Hospital, Professor Paul Haber, said: "It's true that women who drink excessively and chronically and at an early age are getting advanced liver disease and dying of it in their mid30s.

"I've been pretty quiet about this," Tyler was quoted as saying.

He said the liver damage was caused by daily drinking at risky levels rather than binge drinking, because of the accumulated damage to the system.

Patients came from across the socio-economic range and had usually started drinking in their teens.

Guidelines say women should not consume more than two standard drinks per day.

"It is nonexistent in my bloodstream as we speak, so it's one of those few miracles in doctoring where it's like a complete cure. It's gone," Tyler said.

Drugs and alcohol nearly destroyed Tyler's music career, but he said in 2004 that he had been clean and sober for nearly two decades and was living proof that addictions can be conquered.

Abridged from Sydney Morning Herald (3 Sept 06) via www.dailydose.net

Pamela Anderson announced in 2002 that she had hep C, which she was diagnosed with a year earlier.

Australian guidelines suggest people with hep C drink less than the above general guidelines. ED

http://www.alcohol.gov.au/internet/ alcohol/publishing.nsf/Content/ groups#guideline4

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"I've had hep C for a long time, asymptomatic. And I talked to my doctor ... and he said now is the time and it's 11 months of chemotherapy. So I went on that and it about killed me."

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Abridged from The Age (27 Sept 06) via www.dailydose.net

feature

She is at the end of a long career in biomedical research. Her efforts have helped improve treatments for hep C. Her exposure to viral hepatitis is an occupational hazard but she is in good health and should enjoy a long retirement in her country home in Louisiana. It’s not an unusual story, except that this research participant is not human.

She is one of many chimpanzees used each year in the fight against hepatitis.

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ur closest relative in the animal kingdom, chimpanzees are the only animals in which the hepatitis C virus can live and replicate says Dr Robert Lanford, a research scientist at the virology and immunology department at the Southwest Foundation for Biomedical Research, a private, non-profit research organisation in San Antonio.

“One of the things my laboratory does is test new hepatitis C antiviral drugs that are being developed by pharmaceutical companies,” says Lanford, who has studied viral hepatitis for more than 20 years.

“We test them in chimpanzees who are chronically infected with HCV before they go into human trials.

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“There’s no other animal that’s susceptible to hep C, so there’s really no other way to test these drugs to really get an idea if they’re going to work very well in people,” Lanford says, adding that some of the HCV protease inhibitors and polymerase inhibitors currently in phase I or phase II clinical trials were tested on chimps at the Southwest Foundation.

Thomas Butler, a veterinarian who also holds a master’s degree in laboratory animal medicine, recently retired after working with chimps at the Southwest Foundation for 19 years. Prior to that, he spent 22 years doing research with chimpanzees and other animals.

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“The chimpanzee is a good animal for studying the vaccine because they don’t get sick from hepatitis” “When I first got (to the Southwest Foundation) we were working on vaccines for hep B,” says Butler, “then there was the vaccine for hep A. Of course, both of those are on the market now. Certainly they’ve been working on vaccines for hep C and for HIV/AIDS, but nobody’s had a lot of success there.

Chimpanzees were used for all of that type of research.”

“The chimpanzee is a good animal for studying the vaccine because they don’t get sick from hepatitis,” says Butler, speaking about viral hepatitis in general.

“The virus will grow – replicate – and (the chimpanzees) will get some of the markers, but they won’t get clinically ill and, of course, don’t die. As a veterinarian, of course, I was tickled that the animals didn’t get sick and yet were still useful.”

Lanford agrees that he has not seen any adverse affects from the hep C virus in chimpanzees, but he thinks it may have more to do with the primates’ life span than with their immune system. With the average life span of a chimp in captivity being in the early 40s, which is longer than the life span of wild chimps, he says that the chimps simply don’t live long enough for the virus to damage their livers.

In addition to testing vaccines and drugs developed by other laboratories, the Southwest Foundation for Biomedical Research is actively involved in its own research projects. The foundation’s Web site states that the Southwest Foundation is a component of one of the four national hep C cooperative centres, and that researchers at the foundation recently demonstrated that chimpanzees that had cleared infection with one strain of HCV showed protective immunity when exposed to other strains of the virus.

This indicates that it could be possible to develop a vaccine against all strains of hep C.

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Lanford says that breeding colonies of chimpanzees and other primates were set up in the 1960s and 1970s so that the need for research animals could be met without taking more animals out of the wild.

“For many types of non-human primates, we haven’t taken animals out of the wild for a long time because we set up these breeder colonies,” he says.

“Our facility is one of the major breeder colonies for chimps, so most of them were born here and raised here.” He says this is true for the foundation’s baboon colony as well, which has about 3,000 animals.

Eventually, it becomes time for the chimpanzees to retire. “There is a point where they are no longer useful for most research,” says Butler. “Most scientists would say that after a point in time, after being used in several different hepatitis and HIV studies … then they really are not a good, valid research animal anymore. They may be totally healthy – most of them are – they just have been used so many times that you can’t really trust the data you’re getting from them anymore.”

This leads to problems because it generally is considered inhumane to euthanise healthy chimpanzees, yet the animals require expert care and expensive facilities. When two of his colleagues at the foundation, research assistant Amy Fultz and staff scientist Linda Brent approached him with the idea of setting up a retirement sanctuary for chimpanzees, Butler was eager to help.

Butler says that Chimp Haven was incorporated as a non-profit organisation in 1995. He says that Fultz, Brent and others began the long process of raising funds and planning the facility. In 2002, Chimp Haven was awarded a contract by the National Institutes of Health (NIH) to provide lifetime care for federally owned chimpanzees that are no longer

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feature needed for biomedical research. In 2003, the organisation began construction on its facility near Shreveport, La. “Over the long haul, we finally opened up Chimp Haven last April,” Butler says.

“It’s a beautiful facility. I’m kind of proud of it.”

Butler says that Chimp Haven has an “excellent staff” of 23 full-time employees. “Thanks to the good folks of Shreveport, who have been very, very supportive of Chimp Haven, we have a large number of volunteers,” he says. The volunteers do not work hands-on with the chimpanzees, Butler says, but they do much of the public relations and fundraising work for the organisation. Fultz now serves as staff behaviourist at the facility. Brent is the president and director of Chimp Haven, and Butler serves as the chairperson for its board of directors.

Butler says that, for the chimps that were once owned by the NIH, the agency pays for their care for the rest of their lives. While the primary purpose of Chimp Haven is to care for these NIH-owned retired chimps, the organisation accepts chimpanzees from pharmaceutical companies or

other research facilities. Butler says that these organisations pay an endowment to provide for the care and feeding of the retired animals.

Lanford says that the Southwest Foundation will not need to send many of its chimpanzees to the sanctuary. “We are moving some animals out to Chimp Haven,” he says, “but we also have built some very nice facilities on our campus to retire chimps right here.”

Lanford is quick to point out that Chimp Haven was founded by three of his former co-workers out of their compassion for research animals. “I think everybody here that uses animals would agree that we’d like to be able to do this research without animals,” Lanford says. “But the reality is that we need experimental models to help understand the disease so that we can better treat it. Until the day comes that we can cure most people, we will continue to use the necessary animal models to try to develop better cures.”

Abridged from www.hepatitismag.com

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feature

THE number of patients with advanced liver disease or cirrhosis - which if left untreated can progress to liver cancer and death - will jump 38 per cent by 2015 unless Australia dramatically boosts its response to the hepatitis C epidemic.

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he recently published report, Estimates & Projections into Hepatitis C, says such an increase in serious cases would send the number of people with advanced liver disease up from an estimated 43,300 in 2005 to nearly 60,000 by 2015.

Melbourne mother-of-two Moira Burke, 41, was diagnosed with hepatitis C about five years ago, while pregnant with her first child, Christina.

The 90-page report by a federal government advisory committee also found that infections of hepatitis C are increasing. Latest estimates suggest there were 264,000 people living with antibodies to the hepatitis C virus (HCV) - a sign of having been exposed - at the end of last year, an increase of more than 50,000 from 2001.

She tries to keep healthy by eating well, exercising and getting as much sleep as she can.

Because a significant proportion of new diagnoses relate to people who have been living with the virus for years without realising it, the number of new infections happening each year is in decline. About 10,000 Australians a year are thought to get infected with hepatitis C, slightly down on the estimated 11,000 for 2001. Although current therapies can cure the infection in 50-80 per cent of those treated, only about 2000 people a year are being treated.

"Projections suggest that to decrease the number of people living with chronic HCV and stage F2/3 (advanced) liver disease or cirrhosis, at least a tripling of the number of people receiving treatment would be required," the report said.

Greg Dore, associate professor at the University of NSW and head of the Viral Hepatitis Clinical Research Program, said the federal Government's move earlier this year to ease restrictions on treatment eligibility were welcome, but would probably only increase treatment numbers from 2,000 a year to about 6,000 a year. Projections showed this was probably not enough to stop the number of people with cirrhosis from increasing.

"There were so many people infected during the 1990s, that because of the long latency, there will still be enormous numbers moving through to develop cirrhosis or serious liver disease," Professor Dore said.

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She now has intermittent symptoms including fatigue, poor concentration, nausea and "brain fog".

Ms Burke said she wanted to avoid treatments which can last up to a year and carry unpleasant side-effects - until her children were older and less dependent on her.

This article abridged from The Australian, 3 Oct 06 See the report’s Executive Summary, right.

ED.

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I

n Australia to the end of 2005, over 225,000 diagnoses of hepatitis C virus (HCV) were reported to State and Territory surveillance systems. Of annual total notifications to the National Notifiable Diseases Surveillance System between 1991 and 2005, around 65% of HCV diagnoses were in the age range 20-39, with approximately 35% of all diagnoses in women.

living with chronic HCV infection (range 10,000 to 28,000). Of the 30,000 to 35,000 people held in prison in Australia during 2005, it was estimated that between 9,000 and 14,000 were HCV antibody positive, with 7,000 to 11,000 living with chronic HCV infection. In 2005 it was estimated that there were 170 children infected with HCV through mother-to-child transmission.

Studies of HCV risk factors in Australia indicate that the majority, around 80%, of prevalent HCV infections are attributed to injecting drug use. HCV prevalence in injecting drugs users (IDUs) has ranged from 50% to 70% since the early 1970s.

HCV incidence among IDUs in the 1980s and early 1990s has been estimated to be around 15% per year, with some evidence of a decline in HCV incidence in the late 1980s, but remained stable during the mid-1990s to mid-2000s.

Of the 264,000 people living with HCV antibodies in Australia at the end of 2005, it was estimated that:

Among people who develop HCV antibodies following exposure to HCV, around 75% develop chronic infection, remaining infectious and at risk of long-term sequelae from their infection. A previous systematic review of published studies estimated that of all people chronically infected with HCV, around 7% would develop cirrhosis after 20 years following exposure. Rates of liver failure and hepatocellular carcinoma (HCC) following cirrhosis were taken to be 4% and 2% per annum respectively.

A mathematical model of the HCV epidemic in Australia estimated that there were around 264,000 people living with HCV antibodies in Australia in 2005 (plausible range 206,000 to 318,000), of whom 197,000 were estimated to be living with chronic HCV infection (range 154,000 to 238,000).

Of all people living with HCV antibodies, 218,000 (82.3%) were estimated to have been exposed to HCV through injecting drug use, 29,000 (10.9%) were estimated to be from countries of high HCV prevalence who migrated to Australia with HCV antibodies, and 18,000 (6.8%) were estimated to have been exposed to HCV through receipt of contaminated blood or blood products or through other exposure routes such as unsterile tattooing or mother-to-child transmission. HCV incidence in 2005 was estimated to be 9,700 new infections (6,600 to 13,200), 88.6% of whom were exposed through injecting drug use, 7.0% were migrants and 4.4% were exposed through other routes.

It was estimated that there were 22,000 Indigenous Australians living with HCV antibodies in 2005 (range 13,000 to 37,000), of whom 16,000 were

- 67,000 (25%) had cleared their HCV infection - 154,000 (58%) had chronic HCV infection and stage F0/1 liver disease - 38,000 (15%) had chronic HCV infection and stage F2/3 liver disease - 5,300 (2%) were living with HCV-related cirrhosis During 2005 it was estimated that: - 210 developed HCV-related liver failures - 105 developed HCV-related HCC Since the beginning of the HCV epidemic in Australia in the early 1960s, it was estimated that 27,700 people with HCV antibodies had died, of whom 1,900 had died of HCV-related liver disease and 6,000 had died of drug overdose.

HCV-related morbidity was estimated to be substantial, corresponding to a total of 37,800 quality adjusted life years (QALYs) lost during 2005, with the majority of QALYs lost in people with stage 0/1 (77% lost) or stage 2/3 (19% lost) chronic HCVinfection.

Under current combination antiviral treatment scenarios, with around 2,000 people with chronic HCV infection receiving treatment each year, numbers of people living with chronic HCV and more advanced stage F2/3 liver disease or cirrhosis are projected to increase by around 38% by 2015.

Projections suggest that to decrease the number of people living with chronic HCV and stage F2/3 liver disease or cirrhosis, at least a tripling of the number of people receiving treatment would be required.

HCV Projections Working Group: Estimates & Projections of the HCV Epidemic in Australia 2006 www.hepatitisc.org.au/resources/ policyresources.html

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feature

Promising new treatments for hepatitis C are in development, but until then Australia faces a battle in getting the epidemic under control.

Adam Creswell, health editor for The Australian, reports on hep C treatment.

I

t took 16 years after initial infection before Lisa Waller found out she had the hepatitis C virus, and the experience of finding out was so awful she is still giving talks and lectures about it.

Waller, who in March 2000 was living in Sydney, had for weeks been feeling fatigued and "toxic'' "as if I had a hangover even though I knew I hadn't been drinking''. Her GP had just kept dismissing the symptoms as a minor, unspecified virus. But then Waller heard about hepatitis C at a dinner party, where another guest, a doctor, was talking about being infected in a needlestick injury. "Hep C had ruined her life, her marriage was gone,'' Waller recalls.

"As she was describing the symptoms, I thought: `That's how I feel'.''

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Armed with this new knowledge, Waller asked her GP for the test - but she had to confess something first; something she would much preferred to have left in the box marked "bad memories''. Unlike HIV, which can be transmitted by blood and sexual fluids, hepatitis C is almost exclusively transmitted by blood-to-blood contact, and almost never through sex. The main route for transmission of hep C is injecting drug use. Waller had to tell her GP that 16 years earlier, she had injected heroin.

"The doctor at that point shut down,'' Waller says. "I was given the test. When I went back for the results and was told I had hep C, I burst into tears.

"The GP didn't have a box of tissues in the room, and she went out and came back with a single tissue. When I asked for information about hep C, she left the room again and came back with a brochure - printed in 1991. It was very out-of-date and misleading. When I kept pressing her for information, she said `I really don't know - I don't see a lot of hep C in my surgery'. I felt like a piece of human detritus.''

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but until then Australia faces a battle in getting the epidemic under control. ep C treatment.

In February this year federal health minister Tony Abbott announced a key change to the eligibility rules governing who is allowed access to subsidised treatment. The move, which took effect from April, removed the prior requirement that patients have a liver biopsy first to ascertain the level of damage to their liver, before qualifying for subsidised access to a key treatment drug, pegylated interferon.

One group, called protease inhibitors, are likely to start Phase III trials as early as next year; the other group, polymerase inhibitors, are slightly behind and will probably move to phase III in the next two to three years.

Liver biopsies are painful and carry some risks, and unsubsidised pegylated interferon costs patients about $16,000 per year, so the biopsy requirement was criticised as one of the factors holding treatment rates low. Only about 2000 Australians a year are treated, barely one per cent of potential patients. Signs so far are that the move to scrap the biopsy rule has had some effect: experts report a jump in treatment inquiries since April.

"I think over the next five years these two classes of drugs will revolutionise how we treat hep C," Dore says.

But even this remains a drop in the ocean, simply because hepatitis C has been circulating unrecognised for so long - decades if not centuries and the pool of those infected in Australia is so large. While there are about 15,000 people in Australia infected with HIV, hepatitis C is thought to affect over 250,000 - nearly 20 times as many (see table). Greg Dore, associate professor at the University of NSW and head of the Viral Hepatitis Clinical Research Program, thinks the social stigma surrounding intravenous drug use has a lot to do with hepatitis C's Cinderella status. Symptoms or a diagnosis of Hepatitis C forces patients who come from all walks of life and include many highly respectable professionals to confront their past, which may have been a secret from friends and family.

Dore says the longer-term picture for hep C treatment looks fairly promising, as there are two separate new drug classes in advanced development which, based on data so far, may improve treatment options substantially.

Unlike interferon, both are direct antivirals in that they block replication of the virus.

"Hopefully they will eventually be used in combination themselves, so you might have a protease and a polymerase inhibitor.

"The holy grail of hep C treatment will be if you can give therapy for 12 weeks max, with drugs that are less toxic."

Existing therapies can effect a complete cure in between 50 and 80 per cent of cases, depending on which strain of the virus the patient has. But as anyone unfortunate enough to have needed to go through treatment can testify, treatment is arduous and typically lasts about a year.

Treatment requires weekly injections of pegylated interferon, a powerful slow-release drug, which is usually given in combination with twice-daily pills of another drug, an antiviral called ribavirin.

Like many others before and since, Waller found the treatments hard to take.

After finding little solace or practical help at her GP's surgery, a stroke of luck would change things for Waller. At home that night she was watching television and in the commercial break saw the launch of the first public awareness campaign that was attempting to widen public knowledge about hep C. The Helpline number flashed on the screen, but finding treatment turned out to be the easy part.

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feature The side-effects of treatment include anaemia, loss of mental acuity, hair loss, depression, and a profound, lasting fatigue.

Waller, who was living in Katoomba in the Blue Mountains near Sydney during her treatment, became anaemic and found she could not walk the hilly town's streets without have to sit frequently on the roadside benches put there for citizens twice her age, and who did not always take kindly to someone younger taking their spot.

Then there was the mind-fog effect. "I couldn't follow the plot of an Inspector Morse mystery on the telly during treatment," she recalls.

"But it was also the accumulated effect of all the minor things that can get you down. I had a lot of mouth ulcers. You lose your hair gradually, because it's a low dose (of interferon) over a long time, and you also don't feel particularly well.

"And I didn't get depression, but I did suffer from incredible rages."

Waller, who was president of the Hepatitis C Council of NSW for two years until December 2005, says treatment was nevertheless the right thing to do, as after 48 weeks she was declared free of infection.

However, one problem is that Dore says there simply aren't enough hospital clinics, specialists and nurses expert in hepatitis C treatment who could cater for this increase in demand for treatment, even if it could be generated. As a result he's already involved in pilot projects that train GPs to prescribe interferon and ribavirin.

At the moment the trials have related only to maintenance therapy, which means a patient would have had to have been started on treatment by a specialist at a clinic. But Dore has his sights set on that too.

"I think we need to go to GPs initiating and maintaining patients on treatment," he says. "There's no way we are going to treat 6000 to 10,000 through tertiary clinics. It's just not going to happen."

Helen Tyrrell is Executive Officer of the government-funded Australian Hepatitis Council.

She says tackling the stigma is the first step: "What we need to do is turn hep C into just another disease – like heart disease, like diabetes, like cancer, so people don't have to deal with discrimination."

Abridged from The Australian, 30 Sep 2006

The challenge now is persuading more infected Australians and follow her example. Dore says the 2000 now on treatment needs to increase to somewhere between 6,000 and 10,000 to make any serious dent in the pool of infected people.

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Australia has an urgent need to triple the number of people accessing treatment for chronic hepatitis C.

T

his is essential if we are serious about reducing the personal and social costs of hepatitis C virus (HCV) infection, and if we are to reduce progression to HCV-related cirrhosis, liver cancer and liver failure.

HCV is already the primary cause of liver transplants in Australia. Deaths from HCV related liver disease are currently occurring at a rate of 250 a year and increasing. By contrast, HIV-related deaths are at 120 a year and decreasing.

While publicly funded liver clinics treat the bulk of the 2000 people currently accessing pegylated interferon/ribavirin combination therapy annually, without increased resourcing they are unlikely to be able to cope with the predicted future demand.

The ongoing GP-prescriber pilot in NSW involving a shared care arrangement between a PBS S100accredited GP and a treatment specialist attached to a liver clinic has shown that new treatment models can and do work well.

A survey of patients has shown a high level of satisfaction with the second and subsequent prescriptions and ongoing management being provided by the GP, especially in high HCVcaseload practices and in a specialist methadone clinic.

The addition of 82 accredited GPs in NSW and the ACT has meant that treatment access has expanded to beyond that offered by liver clinics, and in settings often more accessible to the patients.

What is needed now is a move to enable accredited GPs to initiate prescription. This would smooth the process of treatment workup, commencement and ongoing maintenance and management.

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Nursing and allied health support, such as counselling and in some cases psychiatric services, would remain essential for these GPs to be able to provide HCV patients undergoing treatment with appropriate support and care to help with often significant side-effects management.

A welcome national development is the forthcoming pilot to help train the alcohol and other drug clinical workforce to take on hepatitis C treatment.

Many people with chronic hepatitis C are clients of drug treatment services, and it makes great sense to take hepatitis C treatment facilities to those settings where clients already feel comfortable and supported, and where they already attend a health service for pharmacotherapy.

Last week the Queensland government allocated $4mill over three years to finance the Shared Care Program, a partnership between GPs and hospital liver clinics, to ensure a more coordinated approach to treatment and support for hepatitis C patients.

The welcome removal of liver biopsy from the S100 treatment access criteria on 1 April 2006 saw a significant jump in treatment numbers - and an ensuing increase in demand on liver clinics.

Whether that increase is sustained remains to be seen, but with 197,000 people in Australia with chronic hepatitis C, and given the need to increase the numbers of people on treatment for their hepatitis C from 2,000 to at least 6,000 a year, the role of GPs and other primary health medical practitioners will become all the more vital.

Stuart Loveday is Vice-President, Australian Hepatitis Council.

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feature

Tiredness seems to be one of the most commonly reported hep C symptoms. It is also often seen as a modern condition within the general community. Should we all be getting more sleep? Or are the causes more complex than that?

P

ooped, shattered, knackered, buggered. Being fatigued is an everyday experience that for most of us is the trigger to put on your PJs and get a good night's sleep. But what about when you just can't seem to get going in the morning? When you run out of puff half way through the day? When you're zonked all the time?

Invigoration products are also on the rise. Sales of 'energy' drinks – caffeine and sugar-loaded soft drinks – have grown by 28 per cent over the last year. Clearly Australians feel as though they need an extra boost to get them through the day.

A recent survey by Sydney's Woolcock Institute of Medical Research found that 11.7 per cent of a random selection of the NSW population suffers from chronic daytime sleepiness. Dr Nat Marshall, the study's lead researcher, adds that 32 per cent of people surveyed have insomnia or sleep disturbances, and almost 18 per cent sleep less than 6.5 hours a night.

If you're feeling fatigued, it's important to establish the most basic of issues: Are you getting enough sleep? While everyone is able to function on less sleep than they prefer, if you are consistently undersleeping, ongoing tiredness will be the result.

Dr Marshall says he found these figures worrying, particularly as a lack of sleep can affect "everything from work safety to productivity and is even thought to promote obesity and diabetes."

Worse still, tiredness seems to be on the rise.

Sydney GP Alf Liebhold says tiredness "is a very common presentation." Liebhold, who's been practising for 45 years, says the number of people complaining of tiredness increases every year.

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A question of sleep

Dr Darren Mansfield at Melbourne's Epworth Sleep Centre specialises in sleep disorders. He draws an important distinction between sleepiness and fatigue. "Fatigue is more of a listless, lethargic sense of reduced energy but not necessarily increased sleep propensity during the day."

People with insomnia, he says, are fatigued, but not sleepy. So if you feel tired and find you can drop off to sleep at will, you are probably under-sleeping.

"Not all of us need eight hours sleep," he says. In fact he believes the eight-hour figure is ultimately unhelpful for many people. GP and co-author of Why Am I So Tired? Dr Ginni Mansberg agrees.

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"I think that eight hour figure that gets bandied around does far more harm than good because people get stuck on it. They can have an eight-hour sleep and wake up feeling exhausted and think: 'What's wrong with me? I've had eight hours'. It may simply be a matter of saying: 'Well I need nine'," says Mansberg.

She adds that women, on average, need an hour more sleep than men.

Why do we sleep?

"People almost forget how to go about getting off to sleep," Mansfield says. They need to be re-educated.

He teaches relaxation techniques before bedtime and says that if you find yourself wide awake at three am, you should forget about trying to continue sleeping. Instead, get up, read a "trashy novel" that is entertaining, but not over-stimulating, until you become naturally tired again.

Only then should you return to bed. Having a strategy like this helps dissipate the frustration, he says.

"There is a lot of evidence to suggest that sleep has an important learning and memory function," says sleep expert Darren Mansfield.

He also recommends keeping your body clock regular by going to bed and rising at similar times every day, and "not guzzling too much caffeine".

"If you demonstrate a complex task and then sleep deprive people afterwards, there is very good data now to show that the sleep deprived have a poor retention of that task or slower learning of the task."

"People find themselves in a vicious cycle where caffeine contributes to a sleep disturbance, but because of the sleep disturbance, they feel tired and want more caffeine," he warns.

Mansfield says that the seemingly random electrical impulses running through someone's brain while they're asleep are actually reinforcing important connections between brain cells. He describes this as your brain "rehearsing" its thoughts. "Information that's in long-term memory tends to disappear unless it's in some way rehearsed," he says.

A bit of vigorous exercise earlier in the evening and a warm shower before bed also help send you to the land of nod. The slight fall in body temperature that follows these "warming" activities can trick the body into feeling sleepier. And don't discard the old wives' tale of a glass of hot milk before bed. Milk contains the amino acid, tryptophan which has been shown to help induce sleepiness.

And because we can't rehearse old information while simultaneously learning new information, we hop into bed, turn out the lights and shut our eyes in order to minimise external stimuli that would otherwise need to be processed. There, free from distractions, our brain deals with all the information that's been absorbed over a lifetime.

Insomnia Some people, however, want to sleep, but simply can't – it's estimated that 80 per cent of Australia's adult population will go through a sustained period of insomnia at some point in their lives. Mansfield says insomnia often arises when people are going through a stressful life period, or are suffering from depression or anxiety. Even when these triggers have been resolved, insomnia can linger, having become ingrained in the individual's sleep routine.

Medical solutions Sometimes, tiredness is the result of a treatable medical problem. Mansberg says she checks for a series of common complaints as her first order of business when seeing a tired patient. "The top three are depression, iron deficiencies and thyroid disease," she says.

The thyroid is a gland that controls a person's rate of metabolism, so if it is not functioning properly, tiredness can be a result. A simple blood test can check if the thyroid is functioning properly.

Sleep apnoea is another possible medical cause that can be definitively diagnosed only through overnight monitoring in a sleep lab. In sleep apnoea sufferers, the muscles holding open the airways become too relaxed and collapse. The person wakes, their muscles retension, and they continue breathing normally.

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feature The trouble is, the brief but frequent wakening prevent them reaching the deep, restful phase of sleep. And often, the person falls asleep again so quickly, they have no memory of the event and, therefore, no idea why they feel so exhausted in the morning.

Lifestyle

Some other suggested causes are: (take a deep breath here because it's a long list) stress, low oxygen levels in offices, poor diet, infection, parasites, hormonal changes, allergies, poor spinal adjustment, anaemia, boredom, weight problems, anxiety, heart valve problems, lupis, and environmental toxins.

"There's an epidemic of people who are financially on a treadmill. I see people who haven't had a holiday in three years. I see people who don't want to take time off when they've got the flu. They're afraid of losing their jobs," says Liebold. It is true that Australians have the second longest working hours in the OECD (the Organisation for Economic Cooperation and Development), behind the USA.

However, it's most likely that the cause is not one of these, but a combination of two or more. The problem is that tiredness is a symptom of just about every kind of illness. Even the common cold makes people feel lethargic. When it is such a non-specific problem, it makes tracking down the culprit all the more difficult.

Enduring fatigue If ongoing or persistent tiredness is present, a diagnosis of chronic fatigue syndrome might be considered. This poorly understood illness affects up to one in 100 people who are struck down with a lethargy that just doesn't seem to go away.

Chronic fatigue often follows an infectious illness such as glandular fever and is accompanied by other symptoms like muscle and joint pain, concentration and memory difficulties and general irritability. Worst of all, even the experts are not sure what causes it.

Liebhold's pet theory on the increase in tiredness is that the rat race is sapping Australians' ‘vim’. "I think that much more is expected from some people than used to be," he says.

Liebold says the constant pressure means we're not relaxing properly and are always running on halfcharged batteries. "The sort of thing people used to do in order to regain their energy was have a bit of fun, have a holiday. They're even too tired to do that."

Mansberg agrees people should limit the number of activities they try to cram into their lives, but cautions that people can't simply drop out of society in order to get a bit more shut-eye.

"I've actually never met a woman who could say: 'What will I lop off my busy schedule? I think I'll just give back my children'," she says.

"We have morphed into a 24-hour society. That could be a good thing. There's no point in saying that's a terrible thing because it's here and it's more about learning to survive in that society than trying to change it."

"We know a fair bit about what chronic fatigue is not and not too much about what it is," says University of NSW expert Professor Andrew Lloyd.

By a process of elimination, researchers have tracked the site of the problem to the brain. Lloyd believes it's a problem with the proper functioning of the brain, rather than any structural abnormality.

He suspects chronic fatigue may actually be several different diseases that simply have the same symptoms, meaning that the hunt for the source will be long and difficult.

But the news isn't all bad – most people with chronic fatigue make a full and spontaneous recovery within six months of being diagnosed. For those that do not get better by themselves, a range of management techniques and support groups ease the burden of the disease.

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feature Dietary issues A poor diet is often the most basic of lifestyle issues and can be fixed relatively simply. Dr Trent Watson, spokesman for the Dietitians' Association of Australia, says that iron is a key ingredient to maintain energy levels. He says red meat, green leafy vegetables and whole grains are all foods that give red blood cells the building blocks for optimum performance in their role of delivering oxygen to muscles.

Carbohydrates also power the body along on its daily tasks. Found in fruit, breads and pasta, it is the food most easily converted to energy.

Dehydration is another factor: "If you become dehydrated, you reduce your blood volume so your heart's got to work harder to pump the same volume around," says Watson.

Alcohol, like caffeine, is a drug that can lead to a vicious cycle of tiredness. "Some people drink alcohol to put themselves to sleep, but alcohol can disturb your sleep cycles, so you don't get your normal pattern of sleep during the night. You may get your eight hours, but because the quality of sleep has been reduced you still wake up fatigued," says Watson.

Tiredness can be an immensely frustrating condition, not least because the very generalised nature of it makes the cause difficult to pinpoint. Nonetheless, some solution – be it lifestyle, psychological, or physical – can usually be found. And if all else fails, it's a really good excuse for a holiday.

Abridged from ABC Healthupdates

Similarly, being overweight puts a lot of strain on your heart. And as a nation, we're the fattest we've ever been. At least 60 per cent of men and 42 per cent of Australian women are overweight or obese. The staggering statistic concerns Watson.

"A recent study in the US of 16,000 people showed a distinct correlation between obesity and excessive daytime sleepiness," he says, adding that people with a body mass index over 32 (anything higher than 25 is considered overweight), reported double the incidence of tiredness during the day.

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my story

I

didn't understand this line when I first read it 20 years ago. I didn't know what homeopathy was and the idea of a "remedy" for an emotional state made no sense to me. But when I couldn't stand to listen to music in 2000 I went to see a homoeopath who gave me magnesia muriaticum and nux vomica. It really helped.

In hep C literature symptoms are nearly always described in very broad terms such as 'flu-like, 'aches and pains and 'fatigue when people's experience of them is often very specific. This translates into positive people being unsure that what they are experiencing is a symptom rather than a separate complaint, or if they are just plain mad.

I was seeing a lot of doctors and nurses at the time because I was doing the big combo hep C treatment. But I wouldn't have dreamed of telling them about the problem with music because for one, it had never been suggested to me that it was a hep C symptom. I just thought the doctors would think I was a bit mad, or put it down to depression and maybe offer me some happy pills I didn't want.

At one point I had debilitating pain and lack of movement in my feet and lower legs in the mornings. I would have to set the alarm half an hour earlier than I needed to get up, just to get my feet and legs working. That's hard when you're really exhausted every day. At that point in my illness I could not cope with the idea that I may have a condition such as arthritis on top of the hep C, but the doctor was noncommittal in his response and didn't bother to investigate my discomfort further.

(The pain abated after a course of Chinese herbs and I have since met many other positive people who complain of exactly the same condition.)

But I wasn't depressed. I just couldn't stand to listen to more than a couple of bars of music of any description, which was a huge problem because it's always been food for my soul. I consulted the homoeopath because I knew she'd not only take my condition seriously, but would also offer me some treatment. I wasn't at all surprised when she said the problem stemmed from my liver.

In 2000 I had been hep C positive for about 16 years and been describing my symptoms to doctors for at least five years without knowing it. It was not until I identified myself as a former injecting drug user and explicitly asked for a test after comparing notes with a friend who was really sick with hep C that anyone thought to give me a test.

Hep C is not diagnosed through people describing symptoms. Many will experience no symptoms for years after contracting the virus, or ever, in some cases. Hep C diagnosis and medical management is all about risk factors and blood tests. But I wonder if symptoms were important for diagnosis if they would get more attention and treatment?

For those people who experience symptoms they are the reality of living with hep C. But inquiries to doctors about specific pain and discomfort often lead nowhere - "could this be a symptom?" is likely to be met with "well, it could be ..." and more often than not, no treatment is offered.

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I know and meet a lot of people who are living with hep C, so I'm not surprised when someone says to me "I've got this rash, this pain, this intolerance could it be my hep C?" It happens all the time. And they are always relieved when I say I think it could be because I've had the same problem, or know of others with the same complaint.

But there is always the possibility that it could be another condition altogether and if we just attribute everything to hep C we may miss something else that's going horribly wrong. Another important factor is that many people with hep C have other health issues, which makes it even harder and more frustrating to work out what's what.

Many people with hep C turn to complementary therapies - even though they are not a "cure", they address overall health, acknowledge specific symptoms and provide treatment and strategies for the person trying to cope with illness. That's often just what's needed. Having your reality reaffirmed means a lot to many people and empowers them to take charge of their health.

my story

It is clear from reader surveys conducted for the Hep C Review that complementary medicine is the topic most people want more of for a number of reasons. Apart from the positives already listed, Western treatment is not for everyone - some just don't like the idea of it, they don't fit the strict criteria, they don't feel "sick enough", or perhaps they've tried and the treatment has failed.

At the 2003 Australasian Society for HIV Medicine (ASHM) Conference in Cairns, Carolyn Lang of the Department of Medicine at the University of Queensland presented her research on symptoms and what she calls temporal clustering (attacks of symptoms) in people living with chronic hepatitis C infection and their effect on people's quality of life.

The good news is that some exciting work is being done by Australian medical researchers to identify symptoms, how they occur and to measure the impact they have on our lives.

When Carolyn projected her table of symptoms for the audience to see it brought tears to my eyes. The 21 symptoms on the list and her description of how they occur in clusters, or attacks, was so life affirming - YES, that's what it's like to have hep C.

Photo by Benjamin Townsend, courtesy of www.deviantart.com

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my story It was the first time my symptoms had been described to me as I had experienced them - as attacks - some of which, like the noise intolerance, I had sought complementary therapies for without knowing for sure that they were hep C symptoms.

Carolyn found most of the 188 participants in the study experienced recurrent debilitating episodes, or “hep C attacks”, which had not been described previously.

The 10 most prevalent symptoms in order were physical tiredness, irritability, depression, mental tiredness, abdominal pain, forgetfulness, sleep problems, joint pain, poor concentration and general body pain. Sixty-two per cent of people reported experiencing "hep C attacks", or temporal clustering.

In all, 21 symptoms were commonly identified with 28 other symptoms being reported only by one or two participants each. These were excluded from further analysis but it would be very interesting to see how many of them would be confirmed by larger study.

The list of 21 is certainly not exhaustive. For example, in the same session of the ASHM conference, Dr Andrew Cheng from the special needs unit at Adelaide Dental Hospital in South Australia presented a paper on his research into hep C and gum diseases.

One of the best things about Carolyn Lang's table of symptoms is that "fatigue" is not there as a symptom - it is broken down into five specific conditions which more accurately reflects what people experience - after all, poor concentration is not the same thing as physical tiredness. The old "flu-like symptoms" get broken down the same way - joint pain may feel more like arthritis than the flu.

When the results of this ongoing research begin to filter down to doctors and health consumers it will hopefully make a big difference to how people's health is seen and managed.

Irritability is a good example - it may surprise some that it comes in as the second most prevalent symptom. If this was more widely understood and acknowledged it would help people to be a little bit easier on themselves for a start - so instead of thinking 'I'm just a bitch', the reality is it's the disease that's a bitch. It would also make life easier on relationships if those around us knew that for certain too.

Lisa Waller was the previous president of the Hepatitis C Council of NSW Abridged from Junk Mail, Issue 9, 05

He said it was established that hep C infection has a significant impact on oral health. In a study he conducted he found a significant difference in the number of teeth missing in the hep C group (an average of six teeth gone) in comparison with the control group (with an average of two teeth missing).

Hep C was found to cause dry mouth, raised tartar levels and gingivitis. Dr Cheng reported that the hep C virus effects the gingival tissue that directly contributes to periodontal (gum) disease, which is very important in terms of overall oral health.

The aim of his research is to help dentists to provide appropriate treatment. For this to happen there needs to be more professional education for dentists and people living with hep C about how the virus compromises oral health and what steps they can take to counter it and also issues around disclosure and discrimination.

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HCV infection is one of the major causes of cirrhosis, liver cancer and liver-related deaths however only a small proportion of people with hep C go on to develop life-threatening complications. The major impact for most people with hep C is on their quality of life, writes Carolyn Lang of the University of Queensland.

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number of symptoms are anecdotally attributed to HCV infection, including fatigue, abdominal discomfort, nausea and arthralgia (joint point). However, there is little data on prevalence of these symptoms. A number of studies have examined QOL (quality of life) in relation to HCV infection. These studies have principally used generic questionnaires that are not specific to HCV infection and have not addressed the issue of the severity of the symptoms.

A smaller number of studies have asked general questions about the presence or absence of a limited number of specific symptoms, particularly fatigue, malaise, myalgia (muscle pain), arthralgia (joint pain), depression, fever, chills, nausea, vomiting and headache, abdominal pain, anorexia, vomiting, weight loss, rashes and eye problems. In these studies, symptomatology is not the main focus, and the information on symptoms are difficult to abstract. In general it is not clear in these studies whether predefined lists of symptoms were used or if patients were asked to describe symptoms they attributed to HCV infection. This distinction is important because the investigators may have compiled the symptom list and these therefore do not necessarily reflect the lived experience of HCV infection.

Since 1999 we have been examining the issue of QOL among people with hep C infection. One area in our initial qualitative study was the physical consequences of HCV infection. Two important aspects emerged from this approach: first, participants identified a variety of symptoms they attributed to hep C; and second, a number of participants reported episodes where clusters of severe symptoms occurred. These debilitating symptom clusters were labelled “hep C attacks” by one participant. Using face-to face interviews we have subsequently confirmed that these symptoms and symptom clusters are prevalent and severe in people living with HCV infection.

Using a cross-sectional study design we assessed the prevalence of 21 different symptoms in 188 untreated HCV positive people in Queensland. This list of symptoms was derived from focus group discussions with 75 people living with chronic HCV. An important difference from earlier studies is that investigators or clinicians did not compile this list of symptoms due to HCV, as had been done in the majority of previous studies.

The 188 research participants were recruited from a variety of agencies in urban and rural Queensland including liver clinics, haemophilia clinics, AOD services and community support organisations.

Table 1.

Symptom prevalence in 188 people with hep C

Physical tiredness

86%

Irritability

75%

Depression

70%

Mental tiredness

70%

Abdominal pain

68%

Forgetfulness

65%

Sleep problems

65%

Joint pain

63%

Poor concentration

62%

General body pain

60%

Headaches

56%

Muscle pain

54%

Nausea

53%

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feature A detailed questionnaire based on the results of the first phase of the project was developed to assess symptoms in people living with HCV. This included basic demographic information (age, gender, education level and income) and questions relating to the likely mode and duration of HCV infection as well as the questions regarding the presence or absence of symptoms, and a visual scale (scale 0 to 10) to measure the severity of each symptom over the preceding three months. Participants were also asked about the presence of symptom clusters.

Overall, the 10 most prevalent symptoms in order were physical tiredness (86%), irritability (75%), depression (70%), mental tiredness (70%), abdominal pain (68%), forgetfulness (65%), sleep problems (65%), joint pain (64%), poor concentration (62%) and general body pain (57%).

The most severe symptoms were sleep disturbance, physical tiredness, mental tiredness and joint pain while the median severity of all other symptoms was moderate.

Women were significantly more likely than men to report physical tiredness, depression, mental tiredness, headaches, food intolerance, sensitivity to light and noise, as well as forgetfulness, poor concentration, nausea and day sweats.

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Participants were also asked if any of the symptoms they experienced occurred together, that is a “group” of symptoms. One hundred and sixteen people identified at least one group of symptoms.

Using this data, a cluster analysis was performed.

This analysis “groups” or “clusters” the participants who experience similar types of symptom groups.

From this analysis five clusters were identified, the first two clusters were the largest with three smaller groups identified.

The first cluster of participants experienced mainly neurological symptoms of irritability, mental tiredness and physical tiredness. The second cluster of people experienced gastrointestinal symptoms, mainly abdominal pain and nausea. The third smaller group experienced the pain-related symptoms and fatigue. The fourth group of people experienced a combination of the neurological symptoms and the gastrointestinal symptoms, while the final group experienced headache and migraine-related symptoms.

There were no significant differences between experiencing a particular cluster of symptoms and age, gender, income, living circumstances (living alone or with a partner), residential address, or in the timing and pattern of the occurrence of these clusters.

feature Participants were also asked if they could identify what factors “triggered” or “relieved” their symptom cluster. Sixty per cent of the people experiencing a symptom cluster were able to identify triggers of these symptom clusters. The presence of stress in their lives was a major trigger – stress with regard to family matters, financial, health worries, and work stress. The type of dietary triggers included poor diet, too much junk food, fatty foods and sugary foods.

More than 70% identified strategies they used to relieve their symptoms. Sleep was consistently acknowledged as an important strategy – either a good night sleep or a daytime nap. Dietary factors that could relieve a symptom cluster included a healthy diet, less fat and carbohydrates and more water.

These results confirm our clinical impression that individuals with HCV experience a variety of symptoms and that these symptoms are frequently perceived as being of at least moderate intensity. In particular these data highlight the high prevalence and severity of physical tiredness, irritability, depression, mental tiredness and abdominal pain in people living with hepatitis C. Some of these symptoms have been reported previously but the prevalence of symptoms in the current study is higher. This may reflect in part the strategy of asking about a specific list of symptoms, rather than using open-ended questions about symptoms attributable to HCV infection.

People do seem to get clusters of symptoms, with most experiencing a couple of different types of symptom cluster. The information on triggers and relieving factors can be used to advise people how to manage their symptoms but more work is needed to understand what are the factors that cause these symptom clusters.

In conclusion, people living with HCV experience a significant burden of symptoms in terms of both the diversity of these and their severity. The current study has identified several different types of clusters of symptoms that occur in people living with HCV. These results has provided the basis for our current study to determine if these symptoms and symptom clusters are more prevalent and severe in HCV than in other liver diseases or in healthy controls, and what other factors contribute to these symptoms.

Carolyn Lang, et al. Journal of Pain & Symptom Management, 2006 (in press)

Abridged from Australian Hepatitis Chronicle, Issue 16, Oct 06

Council keyhole - Advocacy (continued from page 2) Community advocacy occurs through liaison with individuals in relevant government departments, Council representation of strategic planning or advisory committees including the Ministerial Advisory Committee on Hepatitis, direct liaison with individuals in positions of influence including politicians, the use of media (letters to the editor, media releases, opinion editorials, relationship building with key journalists), writing to health professional membership bodies and the like.

As with any advocacy strategy the level of the intervention has to be relevant to the context in which the matter is occurring, and it needs to leave space for further advocacy efforts if the situation is not resolved at first attempt. For example, we would not go straight to the Health Minister if an Area Health Service implemented a policy or practice that was not in the best interests of people with hep C. We would hold that option in reserve.

Advocacy need not be confrontational. In fact, far better outcomes can be achieved through rational liaison, always using evidence based approaches and polite communication.

Successful outcomes can also be achieved through our providing information resources or by delivering education sessions.

Examples of community advocacy include: influencing Area Health Service guidelines on antenatal testing and management of infants born to mothers with hep C and advocating against universal HCV screening of pregnant women; financial and personnel resourcing of treatment services; advocating for expansion (or non closure!) of NSP and pharmacotherapy services; expansion of harm reduction services in prisons (e.g. calls to the Prisons Hep C Helpline advising of non-availability of bleach in a wing of a certain prison results in an immediate email to a central manager in health promotion in the Dept. of Corrective Services who in turn follows up the query with the relevant prison staff); advocacy for liver biopsy removal; drug policy reform; submissions to inquiries and service reviews and strategies development.

HCCNSW

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my story

D

uring the 24 week HCV treatment of pegylated interferon and ribavirin my daughter experienced a number of side effects. We found that actually going through it all was different to reading about the treatment. Some people don't have any, or many, side effects, however the following may be useful information for you.

I found that it is so important as a carer to really listen to what the person says about their pain, their frustration, and what it is they are feeling. What the person says is happening for them, is happening for them. It is so hard for the carer to see their loved one in pain, or shouting angry outbursts, or in tears.

The struggle to try and be as “normal” as possible is difficult, and it takes a lot of courage for them to keep going when there is so much being coped with. The carer can feel so helpless at times too for not being able to "make it better".

Things to watch for

• Severe body pain - joint and muscle pain, skin dry and itchy and sensitive to touch, muscles aching, internal organs aching, fever (feeling hot and cold) - ask the person if they would like to have massage (no guessing!!) as at the right time, when the pain eases, massage can be really helpful.

• Severe nausea - not wanting to eat (loss of appetite). Sometimes the person feels like eating what the carer may consider is junk food.

However if it helps the person to feel more "normal", then offer what is being asked for. This also slows down the weight loss. To help the immune system it is important not to cut out healthy food altogether of course.

• Severe headaches - needing to lie perfectly still my daughter found that decaffeinated coca cola helped, as well as the doctor-suggested medications.

• Hair loss - it is scary to find hair in the bottom of the shower, or on the carpet, and patches on the head where hair is no longer there. Sometimes cutting the hair shorter helps to cover the loss, and a new hair style can give a bit of a lift.

• Forgetfulness, brain fog, time distortion - not remembering to take medication or to self inject.

The carer needs to make sure, either by giving the medication and the injection (I didn't have to do this thank god), or watching that the medication is being taken and the injection is done. It's helpful to keep a diary and mark in appointments to be kept, chores to be done, family commitments to be followed through. The brain fog experienced makes it difficult for the person to think. It is so very important for the carer not to take over, but to give gentle reminders of what is to be done. It is important to help build self confidence, and to support actions that also help build self confidence.

• Anger outbursts - happen out of frustration with the self, with the ongoing symptoms, with not feeling "normal", with the brain fog, with feeling out of control of the treatment/situation, feeling as though going crazy. Sometimes the carer feels that they are the target of the volcanic eruptions, and sometimes they are, however imagine how you may feel if you were in the same situation.

• Sensitivity to sound, tinnitus (constant or periodic ringing/whistling sound in the ears) loud noise may feel painful. Need to be on their own to cope (either in silence or with music), in peaceful surroundings. Listen to what the person says they need to do.

• Tiredness, no energy (fatigue) - may be due to anaemia (lack of iron in the blood) or from the body and spirit fighting the virus and coping with the treatment. Rest, peaceful surroundings, time to stare into space, music or silence, withdrawal from the family, help. Understand that you the carer are not being rejected, the body heals when it is relaxed and resting. Help with the household jobs.

• Not being able to sleep, sleep disturbance - at night as well as during the day. Music, staring into space, medication, meditation, may help.

• Mouth ulcers - painful, can prevent enjoyment of food.

• Blurred vision (difficult to focus eyes) - can continue three months after the treatment ends.

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may seem selfish but it is a real fact. Being able to talk about this with each other is important for understanding, and to work together for the best possible results.

• Depression - not wanting to go on, feeling that no-one understands, constant tiredness, unable to sleep, feeling isolated even when surrounded by caring people - antidepressants needed, during and for 12 months after, treatment. Some people may choose not to use antidepressants. Whether taking these or not, the carer needs to watch carefully how the person is acting and how they are handling their situation, especially if there is a family history of depression. Encourage regular contact with the HCV support group network (daily, if able to use a computer), HCV nurse, doctor/specialist

• Muscle wasting - massage helps to try to keep muscle tone.

• No emotional energy (very often not able to support partner or children) - all the energy the person has is needed to defeat the virus and cope with the treatment It is not a rejection of loved ones, there is just nothing left over. It

The carer has needs too and it is important that you have a support network for you as well. A lot of energy is needed to be able to be helpful to the person dealing with the treatment. It is ok to feel tired, angry, etc., and you need to have someone to "have a grizzle" to about this - not the person going through the treatment though.

Despite all of the above, it is a special time for all concerned. Deeper and heartfelt understanding, and compassion, for each other and others, seeing the funny side of some moments, and possible clearance of the virus, can be some of the rewards.

Thank you for reading this, good luck, many good wishes.

Emi, NSW

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feature

Just competing in the Australian Transplant Games makes Julie Gumm a winner.

Bringing home a silver medal was a bonus.

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liver transplant more than a decade ago did not just change Mrs Gumm's life. It saved it.

And now the Queanbeyan resident is living it to the full.

Mrs Gumm, 59, was part of the Canberra contingent that travelled to Melbourne last week to compete in the Tenth Transplant Games.

She competed in the tenpin bowling on Wednesday morning, in both the singles and doubles where she teamed with a woman from Thailand and participated in the three kilometre walk.

However, it was in the cricket ball throwing, where she won silver, that Mrs Gumm really shone.

It is about 12 years since a liver transplant put Mrs Gumm on top in her 14-year battle with a bad liver that resulted from chronic hepatitis.

As a result, she is more than happy to stand behind the message of the Games - sign up to be an organ donor. "The organisers try to get across the importance of people becoming donors because without those donors, we wouldn't be here," Mrs Gumm said.

"It's all about fun, no-one takes the competition seriously - if you get a medal it's a bonus," Mrs Gumm said.

"It's the kids you really feel for, that have had transplants or are waiting. They're the ones who really enjoy the Games," Mrs Gumm said.

Athletes of all ages who are on dialysis, who have had kidney, liver, bone marrow, heart, heart and lung or double lung transplants, compete in events that range from swimming to golf, backgammon to chess over one week in Australia every two years.

"It is an opportunity to get out and to have a bit of fun," Mrs Gumm said. "The Games show that there is life after a transplant."

"I thought you had to be an athlete to compete, so I only went in the walk the first time," she said. "I really didn't know what it was about."

For further information on organ donation go to www.transplant.org.au

Abridged from the Queanbeyan Age, 29 Sept 06

Even though the Games have a serious message for spectators, they are all about a week off for the competitors.

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promotion

T

he number of Australians registering to become organ donors is declining, with donations plummeting by more than a worrying 20 per cent.

Just 84 organs have been donated this year, compared with 108 during the first six months of last year, according to figures released by Transplant Australia.

"Last year, there were only 204 organ donations in the entire country," said Transplant Australia chief executive Mark Cocks.

"More than 3,500 Australians are on waiting lists for an organ, but the number of people who need a transplant is much higher. There are about 8000 people who are on dialysis, and only 1500 of those are on a waiting list."

Mr Cocks is calling on large hospitals to appoint specialist advisers to identify potential organ donors and approach their families for approval.

"We are missing potential donors who are not being asked, and we need to do more in the community to raise awareness," he said. "The US has double the organ donation rate we have, as do a lot of OECD countries.

"We are the bottom of the list. We had a bit of a spike when the David Hookes Foundation was set up, but now it's declined."

The foundation was established in February 04, after the death of the former Test cricketer, to encourage Australians to become organ donors.

The Organ Donor Register, which normally receives about 2,000 calls a month, logged almost 13,000 in the two weeks after the foundation was set up.

"In Spain, which has a much higher donor organ rate, every major hospital has a medical donor representative who makes sure hospital staff are aware of potential donors," Mr Cocks said. "The federal and state governments need to look at strategies like this."

He encouraged people who want their organs donated after their death to inform family members of their decision.

In Australia, approval for organ donation rests with the deceased's next of kin.

"Figures show that if the potential donor has told their loved ones of their intent to be a donor, 80 per cent of the time the family will agree to organ donation," Mr Cocks said.

"But if they didn't tell their family, the refusal rate is around 50 per cent."

Abridged from www.theaustralian.news.com.au (27 July 06)

Helping each other..

Ideally, if everyone with hep C bequeathed their liver through the Organ Donor Register, there would be many more ‘reasonable’ livers available and no person would die needlessly on the liver transplant waiting list.

See page 54, The Most Precious Gift, for more information and please sign up so that you can possibly help someone less fortunate.

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my story

H

ello, I am a public policy professional and work as a consultant in the public service. I am 50 years old and in reflecting on my hep C experience, the most important thing that happened for my ability to manage living with hep C was being diagnosed. I had hep C for over 30 years before I found out. That was in March this year. Then it all started to make sense, being sick or ill for so many years. Being bowled over by things that others seemed to skate through.

My self management is based around these areas: Mood: Once I started treatment I was able to apply some of the skills and techniques for personal management that I had developed or been taught over my lifetime. The most important one of all is meditation. Simple meditation twice a day for twenty minutes, sometimes a lot longer if needed.

Meditation allows me to be calm, relaxed and clear minded. Meditation is my most important tool to manage a professional demanding career while bouncing around the universe on slow release interferon.

Skin: As a result of the virus raging through my liver over 30 years I developed Porphyria Cutanea Tarda (PCT) which means blistering and tearing skin with purple scarring from really high iron levels. This has improved dramatically with venesection (500 mls of blood removed each fortnight for 4 months) and with a really healthy high vegetable and fruit diet.

Diet, rest and staying out of the sun. My skin is slowly recovering. As the virus is dying and being eliminated by combination therapy, my careful diet management is showing dividends. Therapy has caused me to break out like a teenager. Diet, care and creams. Coconut creme soap. Sea salt baths.

Lots of sleep. More fruit. More sleep. Lots of vitamin B and ginseng. If in doubt do research.

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Relationships: This has been a tough one. First of all don't tell those you don't know will handle it well.

OK, that works well! Secondly tell those closest who have to know. Not so easy or smooth. Expect troubled responses - especially from teenage daughters... When its difficult, I meditate. After all I'm the one who's special!

Don't tell people at work if you don't have to - none of their business in most cases. If you have good friends who are worldly enough to handle it and be supportive then you must tell them - the best thing I have done in this area of my life is to tell a few wise friends. The fact that nothing changed in those friendships was a huge boost for me. Just huge, and that's the way it should be.

I have done some serious work on my emotional intelligence recently and those skills are fabulous for when things get tricky in relationships. I met a lovely woman recently and we have been working on working it out between us. Its not been easy, and not just because of hep C. And that's normal. That's a really good word for me - normal.

Me: This is the overarching one. This means for me reviewing openly what I am doing, how I am doing my stuff and where I am going. It means knowing who I am and where I have come from. It means being open, caring, trusting and loving. It means being strong. Most of all it means that I am really happy now that I was diagnosed, that I am getting treatment, that the virus is dying and that the rest of my life is going to be just bloody amazing.

Don't really like that interferon, even though I just love it.

Telegram Sam Reprinted from www.hepcawareness.net.au

Graphics from Yahoo or Google images

feature

The party season is coming up soon and it’s always around this time that I feel the pressure to eat and drink way too much.

Do you have any tips on how to enjoy myself and look after my liver at the same time?

•

This is a common question, and you are not alone in feeling that there is added pressure to indulge at this time of year, however it’s true that over indulgence can have an impact on the liver. The liver performs a range of functions including filtering and removing toxins from the body, producing proteins and enzymes, storing sugars and vitamins, and producing bile that helps to break down fats. The hep C virus can make life difficult for the liver to do its normal job, which is why it’s important not to put it under too much additional strain.

As most people with hep C will know, one of the most important health recommendations is to limit, and in some cases cut out completely, drinking alcohol. For many people this can be quite a challenge, especially if you are used to having a few drinks with friends or colleagues.

Moderation and balance are the key things. It’s recommended that people with hep C have a healthy well balanced diet – no different to what’s recommended for all Australians. This means that people should aim to enjoy a variety of food from the whole range of food groups, which includes grain foods (bread, rice, pasta and cereals), fruit and vegies, dairy, meats, seafood, eggs, and nuts. It’s best to keep sugar, salt, fatty foods and caffeine at low levels.

Some suggestions for looking after your self while socialising could include

•

Have a small healthy meal before the event so that you may feel less tempted towards unhealthy party food

If holding an event yourself you could provide a range of healthy snacks such as dried fruits and unsalted nuts, low fat cheeses, olives and gherkins, and sliced vegetables (capsicum, carrots, celery, broccoli) alongside a low fat dip.

The recommendation for people in Australia is that, on average, men should have no more than 4 standard drinks per day (which equates to about 2½ glasses of wine or 2 schooners of full strength beer) and women should have no more than 2 standard drinks per day (which equates to about 1 glass of wine or a schooner of full strength beer). It’s not uncommon to occasionally drink more than this, especially when socialising, but if you have hep C it’s important not to exceed these recommendations for the majority of the time, and in fact it’s advisable to stay well below them. This is because alcohol can potentially speed up liver damage in people who are living with the virus.

A few tips that may help people keep their drinking at low levels include: switch to low alcohol drinks, mix drinks with water or lemonade, alternate between alcoholic and non-alcoholic drinks, and try to have 2 to 3 alcohol-free days each week.

Even though it’s very important to maintain a healthy diet and drink in moderation, remember that we’re only human. Try to be healthy most of time and don’t forget to have fun as well!

“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

Western medicine can’t always explain how it works, but treatments from the East are gaining acceptance.

F

aced with acute pain, most people head for the nearest hospital. For many chronic conditions, however, more than five per cent of Australians now use traditional Chinese medicine, according to Professor Charlie Xue, head of the division of Chinese Medicine at the RMIT University.

Western medicine is some way from wholeheartedly embracing traditional Chinese medicine (TCM), but there have been moves to incorporate aspects of it.

"When I came to Australia from China 12 years ago, the medical profession didn't want to know about Chinese medicine, but now it's more open-minded," Xue says.

In Xue's case, this open-mindedness has seen his treatments incorporated into an emergency medicine setting. "My team now provides acupuncture to treat patients in pain at the emergency department at Melbourne's Northern Hospital - if we'd suggested this 10 years ago, people would have laughed at us."

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Few Western-trained doctors refer patients to a TCM practitioner. The barriers to more doctors referring patients for TCM include lack of registration - only Victoria has a registration system for its practitioners - and lack of evidence for its benefits.

Still, Xue says, it is the subject of increasing study and there's some evidence that acupuncture helps treat headaches, period pain, back pain and chemotherapy-induced nausea and vomiting.

Studies suggest it may improve IVF's success, though it's unclear why.

"It may increase blood flow to the uterus," says Dr Caroline Smith, who has conducted a study of acupuncture and IVF through the University of Adelaide. "It needs more research, but we know acupuncture does no harm and may increase women's chances of success."

Graphics from Yahoo or Google images

feature

tments from the East are gaining acceptance.

As for Chinese herbal medicine, its acceptance lags behind acupuncture, which now attracts a Medicare rebate provided it's done by a medical doctor trained in acupuncture. But animal studies at Sydney's Garvan Institute of Medical Research suggest a Chinese herb, berberine, shows promise for diabetes by helping to reduce blood sugar levels.

At the University of Technology Sydney, trials of a Chinese herbal formula in rats has found it reduces the, risky symptoms of metabolic syndrome — pot belly, high blood pressure, high blood fats and insulin resistance.

Evidence to support TCM is building, yet its mystique persists because it's hard to find Western medical explanations for how it works.

Unlike Western medicine, which often reduces the cause of illness to a specific organ or system in the body, TCM attributes disease to an imbalance affecting many different parts of the body. It holds that good health depends on a strong flow of an energy source called "chi" coursing through meridians or pathways in the body - we get sick when pathways become blocked, preventing the flow of chi.

This may have its own logic - but X-rays can’t detect a blocked meridian and there's no test to measure the flow of chi.

But Western medicine could explain why some research suggests acupuncture may improve polycystic ovarian syndrome, the hormonal disorder affecting five to 10 per cent of Australian women.

With this disorder, "the levels of male hormones are increased, disrupting menstruation and fertility says Dr Danfom Lim of the faculty of medicine at the University of NSW, who is studying the use of acupuncture to treat the syndrome. "Studies have found acupuncture helps menstruation and fertility return to normal."

This may be due to acupuncture's effect on a part of the brain called the hypothalamus. Research suggests acupuncture raises levels of betaendorphins, the body's natural painkillers produced by the hypothalamus, which controls the hormoneregulating pituitary gland, Lim explains.

As for the effects of herbal medicine on period pain, about 55 trials from Japan, Taiwan and China say it's effective, says researcher Dr Xiaoshu Zhu, of the Centre for Complementary Medicine Research at the University of Western Sydney.

According to Chinese medicine, herbs work by clearing blocked meridians and strengthening the reproductive system, she says, but a Western explanation might be that they have an effect on hormones, relax uterine muscles or reduce prostaglandins, chemicals thought to cause period pain.

There are parallels in Chinese and Western medicine, Zhu says, but "you can't always make sense of Chinese medicine in Western medicine terms”.

As with others trained in both practices, she believes that learning both gives practitioners more skills to draw on. Or as Xue says, "Neither is perfect - but if we can get the best of both worlds, we get the best for patients”.

Article by Paula Goodyer. Abridged from Sydney Morning Herald, Essential Health, 5 Oct 06.

Also see, Complementary therapies, p51. ED

Find a reputable practitioner There is no independent regulator in NSW although practitioners are pressing for a formal registration system like Victoria's Chinese Medicine Registration Board. Dr Chris Zaslawski, director of the College of Traditional Chinese Medicine at UTS, suggests word of mouth or checking with a reputable professional association such as the Australian Acupuncture and Chinese Medicine Association.

There are a range of complementary therapy professional organisations in NSW and nationally.

Phone the NSW Hep C Helpline for more information. ED

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membership page

membership

Here we highlight items of interest regarding membership of the Council and promotions only available to those who are current financial members.

Our bulletin, Member News, with topics of special interest, is mailed under separate cover to all current members. Check your letterbox.

Join the Council or renew your membership the e-friendly way, with our secure online facility Don’t forget that our membership year commences on 1 March, so renewals will be due then. All memberships require renewal each year, including zero fee category.

Just go to our website www.hepatitisc.org.au and click on the membership link.

Individual members who join or renew by 1 March will go in the draw for a double movie pass. Be in it to win it !!!

MEMBER NEWS . . . .

In your Summer edition of Member News, please watch for: > Notes from our Community Information Forum on 9 November > Our new bookmark enclosed as a thankyou for your continuing support of the Council and the affected communities > The next Board profile in our series Getting to Know Your Board, this time spotlighting one of our longest standing Board members

Membership Invoices . . . .

For the convenience of record keeping for members in the membership categories of Professional, Community-based agency, and Public/Private sector agency, membership renewal invoices for the 2007 Membership year will be posted out in early January. Once again we are pleased to be able to hold membership fees at the same level as before.

Attention Agency Members Sydney Tower + OzTrek Adventure Winner Congratulations to our very excited member who won the Family Pass to Sydney Tower + OzTrek, kindly donated

by Sydney SkyWalk.

Don’t forget, Council members who phone our office for a Special Discount Code will be eligible for 30% off the price to Step out over the Edge onto Sydney SkyWalk To each of you, have a special Christmas holiday season, good health and all good things to look forward to in 2007 44

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In line with a number of similar organisations, we would like to acknowledge your support in a public way. We propose to list on our website all Community Based and Public/Private Sector Agencies (NOT individual members) who are current financial members.

Please let us know if your agency would prefer NOT to be listed in this way.

Thank you to all our members who were able to attend our Annual General Meeting on 9 November and vote positively on small changes to our Constitution.

Thank you too for attending our Community Information Forum on the same evening.

promotion

Hep C Australasia an online support group for people affected by hepatitis C

Hep C Australasia is a community-based internet discussion forum which aims to empower people affected by hep C and provides a place to share ideas, opinions, support, tears and laughter.

We seek to support each other emotionally through the difficulties and challenges associated with having hep C.

We do not promote any mode of treatment. We recognise that different treatments are appropriate for the different needs, wishes, and situations of different people.

We are Australasian-based and our primary focus is on those people affected by hep C and living in Australia and New Zealand. People from other countries are welcome and enable valuable linkages to what is happening with hep C in other cultures.

www.hepcaustralasia.org

Announcing a clinical trial to find out whether acupuncture treatment has any effect on the health outcomes of people with hepatitis C. The trial is being undertaken at the University of Technology, Sydney, as part of a Master’s Degree research project.

Participants need to: • have a documented positive PCR viral detection test • be aged between 18 to 70 years • be not currently undertaking combination therapy (or have been on it within the last three months) Treatment will include two acupuncture treatments per week over a twelve week period (24 treatments) at a Guilford, Sydney, acupuncture clinic. Five blood samples will also be taken over a six-month period.

Participants will also be expected to complete questionnaires during the trial.

If you want to know more about this project, please contact Christine Berle on 9632 8989 or Christine.A.Berle@student.uts.edu.au

An invitation to a social event for people affected by hep C Due to the success of the morning tea in October, the Hepatitis C Council of NSW is organising another event in January. People affected by hep C, including family and friends, are invited to come along for supper and a chat with others. Children are welcome. This is a free event and RSVP is not necessary. For more information phone 1800 803 990.

WHEN: Drop-in anytime between 5.30pm & 8pm, Wednesday 24th January 2007 WHERE: 1st Floor (stair access only), Hepatitis C Council, 349 Crown St (Corner of Crown St & Albion St), Surry Hills, Sydney.

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promotion VOLUNTEERS NEEDED FOR A PEER SUPPORT PROGRAM If you have experiences of living with HCV and would like to help others then please read on…..

An exciting new Peer Support Program is being run during 2007 by the Hepatitis C Council of NSW. The program will involve trained volunteers providing phone-based support and discussion to people in the community who are affected by hepatitis C. Many of the callers may be considering or are currently undertaking a course of treatment.

This unique opportunity exists for people who have experiences of living with hep C to become a volunteer and provide support to their peers. We are particularly interested in hearing from people who have already experienced interferon-based treatment. The program will initially run for 12 months and volunteers can live anywhere in NSW. People can do the volunteer work either from their own home or can come in to our Surry Hill's office. Volunteers will have their phone call expenses reimbursed and the cost of attending a 2 day training course in Sydney is covered.

To find our more about volunteering for the Peer Support Program and to request an Information Pack please phone the Hep C Helpline on 02 9332 1599 (Sydney callers) or 1800 803 990 (freecall) or email: info@hepatitisc.org.au

Have you recently contracted hepatitis C? Would you like to help with hep C treatment research?

The Australian Trial in Acute Hepatitis C (ATAHC)* The National Centre in HIV Epidemiology and Clinical Research is running a national study to look at outcomes of people who have recently contracted hepatitis C, and the possible benefits of treatment at this time.

If you have been recently diagnosed with hep C (in the last 6 months) and believe that you might have contracted hep C within the last year or two, and you would like to know more about this study, please contact the study coordinator Barbara Yeung on (02) 9385 0879. If you live in NSW, you can also phone the NSW Hep C Helpline on 1800 803 990 *This has been approved by the St. Vincent’s Hospital Human Research Ethics Committee. Ref #H03/074

New drug treatment for methamphetamine and cocaine addiction The National Drug and Alcohol Research Centre in Sydney is conducting a clinical trial of a new drug which aims to help people with problems with methamphetamine (often known as speed, ice or crystal) or cocaine.

While there is a lot of news about the growing number of people with methamphetamine and cocaine problems, there have been no medications available to help people who have become dependent on these drugs.

The NDARC study is investigating whether modafinil, a new type of non-habit forming

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stimulant, is effective in reducing the craving and uncontrolled binge patterns that are characteristic of both methamphetamine and cocaine dependence. Modafinil has shown great promise in treating cocaine users in US trials and this Australian study is among the first to extend this to methamphetamine users.

Patients take modafinil daily for ten weeks and may also participate in a tailored counselling program.

For more information please contact James Shearer 0414 385 149

research update Marijuana aids hep C therapy USA - Marijuana can improve the effectiveness of drug therapy for hep C, a study has found. The work adds to a growing literature supporting the notion that in some circumstances pot can offer medical benefits.

Led by Diana Sylvestre, researchers at the University of California at San Francisco and at an Oakland substance abuse centre tracked the progress of 71 hep C patients taking the difficult therapy. Tests and interviews indicated that 22 smoked marijuana every day or two during the treatment period while 49 rarely or never did.

At the end of the six-month treatment, 19 (86 per cent) of those who used marijuana had successfully completed the therapy -- meaning they took at least 80 per cent of their doses over at least 80 per cent of the period. Only 29 (59 per cent) of the nonsmokers achieved that goal.

Similarly, 54 per cent of the marijuana users achieved a "sustained virological response," the gold standard goal of therapy, meaning they had no sign of the virus in their bodies six months after the treatment was over. That compared with only 18 per cent of those who did not smoke pot.

While it is possible that the marijuana had a specific, positive biomedical effect, it is more likely that it helped patients by reducing depression, improving appetite and offering psychological benefits that helped the patients tolerate the treatment's side effects, the team reports.

European Journal of Gastroenterology & Hepatology. 18(10):1057-1063, Oct 06

Abridged from The Washington Post, 13 Sept 06, via www.dailydose.net

African Americans have lower response rates to HCV therapy USA - African American adults with chronic hepatitis C are less likely to respond to standard combination therapy with peginterferon and ribavirin, a study in the August issue of Gastroenterology confirms.

The reduced response rate among African American patients is not caused by "the usual predictors such as patient age, gender, pretreatment serum HCV concentrations, amount of fibrosis in the liver biopsy nor amount of medication taken," Dr Charles Howell of the University of Maryland School of Medicine in Baltimore notes in a statement issued by the American Gastroenterological Association.

In a multicentre treatment trial, 196 African American and 205 Caucasian American treatmentnaive patients with HCV genotype 1 infection and similar baseline characteristics received combination therapy for up to 48 weeks.

The sustained virologic response rate was 28% in African Americans compared with 52% in Caucasian Americans.

Racial differences in viral responses were evident as early as four weeks after the start of treatment, the team notes.

According to Dr Howell, "the basis for the racial difference in virologic response rates is being addressed by ongoing supplementary studies in genetics, immunology, interferon signalling and pharmacology, and virology."

Gastroenterology 2006;131:470-477

Abridged from www.medscape.com

Readers are advised to take care in regards to this news. Marijuana is illegal in NSW and the drug has potential to cause physical, psychological or social problems. ED 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 In our previous readership surveys many people say our overall knowledge and help develop consensus 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 they want to see detailed information on hepatitis C. opinion on particular research topic.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 These ‘research update’ pages in the magazine 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 To clarify any medical terminology, or for further attempt to meet this need.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 information, please speak to your doctor or specialist, 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 Individual articles may sometimes appear to or phone the NSW Hep C Helpline on 9332 1599 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567 contradict current knowledge but such studies are (Sydney callers) 1800 803 990 (other NSW callers).

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research update Lifestyle changes and beliefs Can sulphasalazine reverse regarding disease severity in liver disease? people with chronic hep C UK - A team of liver specialists, whose groundFrance - The aim of this prospective study was to investigate beliefs regarding disease severity and lifestyle changes following hepatitis C diagnosis in patients with chronic hepatitis C (CHC). One hundred and eighty-five patients were interviewed by means of self-questionnaires exploring several aspects of their disease.

Most patients (93%) identified cirrhosis and liver cancer as the two main complications of CHC. More than half of patients (59%) thought that CHC was always associated with a fatal outcome whereas 3% thought that they would stay healthy. HCV viral load was the most commonly reported factor associated with disease severity.

Sex life changes were reported by 107 patients (58%) whereas dietary intake changes were reported by 88 patients (48%). In detailed analysis, changes in sex life were associated with male gender, perceived disease severity and anxiety, whereas changes in dietary intake were associated with age and anxiety.

Our results show the considerable impact of CHC diagnosis on peoples' lifestyle. They emphasise the need for improving CHC patient counselling in order to avoid unnecessary sex life and dietary intake changes.

L. Castera; et al. J Viral Hepat. 2006;13(7):482-488.

Abridged from www.medscape.com

breaking work incudes the identification of a drug with the potential to treat liver disease, has moved from Southampton to Newcastle University, creating the largest group of its kind in the UK. The newly-arrived group is headed by Professor Derek Mann, who last year led collaborative research which demonstrated in laboratory tests that sulphasalazine, a drug currently used to treat arthritis and bowel disease, is capable of reversing fibrosis in the liver.

The results were published in the journal, Gastroenterology. A second paper, published in Apoptosis, describes the Southampton group's collaboration with chemists and oncologists to produce novel and more effective derivatives of sulphasalazine.

The researchers believe that, subject to further research and clinical trials, sulphasalazine could potentially be used to treat chronic liver disease (cirrhosis), a condition which is currently untreatable but which is on the increase in the UK, probably as a result of greater alcohol consumption, particularly binge-drinking, and levels of obesity.

Inhibition of Inhibitor of _B Kinases Stimulates Hepatic Stellate Cell Apoptosis and Accelerated Recovery From Rat Liver Fibrosis. Gastroenterology 2005; 128: 108-120.

Novel sulfasalazine analogues with enhanced NFkB inhibitory and apoptosis promoting activity.

Apoptosis 2005; 10: 481–491

Did you know..? that the hep C virus is so small that 30 billion would fit in a space the size of the full stop (dot) at the end of this sentence.

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Abridged from a University of Newcastle press release.. http://www.ncl.ac.uk/ press.office/press.release/ content.phtml?ref=1159201335 A search for research articles using ‘sulfasalazine’ and ‘hepatitis’ reveals only one study. A 34-year-old woman developed dermatitis, fever, lymphadenopathy and hepatitis during a course of oral sulphasalazine for rheumatoid arthritis and died within five weeks. Her’s may have been an extremely rare drug reaction but we would urge caution to anyone considering self medication with this drug. ED

research update Colchicine may prevent hepatocellular carcinoma in people with hepatitis

Hep C contamination of toothbrushes: myth or reality?

Mexico - The anti-inflammatory agent colchicine may prevent or delay the development of hepatocellular carcinoma (HCC) in patients with hepatitis virus-induced liver cirrhosis, physicians in Mexico report.

Germany - This study examines the contamination of toothbrushes in patients with chronic hepatitis C as a model for a possible unconventional way of transmission. In 30 patients with chronic hepatitis C, 2ml of saliva (before and after toothbrushing) and the toothbrush rinsing water after toothbrushing were tested for HCV-RNA. Saliva before and after toothbrushing was positive for HCV-RNA in nine (30%) and 11 patients (36.7%), respectively. Twelve of the toothbrush rinsing water specimens (40%) tested HCV-RNA-positive. In six of these 12 patients, the 'native' saliva had been negative for HCV-RNA.

Colchicine is used primarily to treat gout and immunologic diseases such as scleroderma.

Multiple studies have ruled out the use of colchicine for progression of liver disease, Dr Oscar Arrieta, an oncologist at Instituto Nacional de Cancerologia in Tlalpan, and his associates note in the journal Cancer. However, they have found no published data regarding the drug's effect on the development of HCC. According to their report, the research team evaluated the use of colchicine in 186 patients with hepatitis virus-related cirrhosis who were treated between 1980 and 2000. Colchicine was used to treat 62% of patients, at a dose of 1 mg 5 days/ week, initiated when cirrhosis was diagnosed.

After 3 years' follow-up, cirrhosis had progressed among 56% of those taking colchicine and 60% of the other patients, further proof that colchicine has no direct effect on the progression of cirrhosis.

However, colchicine did appear to prolong time to HCC in these patients.

In the colchicine group, 9% developed HCC, versus 29% in the non-colchicine group, the researchers report. Average time to develop HCC was 222 months among those treated with colchicine, versus 150 months in the other group.

"Colchicine can prevent the development of HCC, independent of other factors such as age, platelet count, alpha-faetoprotein level, and transaminase levels," Dr Arrieta and his associates conclude.

However, larger prospective studies with longer follow-up will be required to confirm this observation, they add.

Cancer 107(8): 1852-1858. 11 Sept 06

This study has demonstrated that with sufficiently sensitive virological methods, a contamination with HCV-RNA can be detected in a large number of toothbrushes used by hepatitis C patients. In our study, the contamination of the toothbrush rinsing water did not show a statistically significant association with serum viral load or parodontal status.

The mere finding of HCV-RNA on the surface of contaminated tools does not prove potential transmission of the virus by these tools, of course, and the low infection risk usually published for household contacts of hepatitis C patients provides good evidence against a significant role of transmission by household objects. Nevertheless, our data prove a possible contamination of personal care objects, suggesting at least a theoretical risk of infection by sharing them.

Thus, our study strengthens the recommendations to pay attention to a clear separation of personal care objects between patients and their household members. Considering the great epidemiological importance of hepatitis C, further examinations and maybe even official instructions concerning publicly used and possibly contaminated objects such as razors in barbershops are indicated.

G. Lock; M. Dirscherl; et al. J Viral Hepat.

2006;13(9):571-573

Abridged from www.medscape.com

Abridged from www.medscape.com

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interferon-based therapy Peg Interferon alpha & Ribavirin Subsidised ‘peg combo’ treatment for people with chronic hepatitis C is available to those who satisfy all of the following criteria: 1

Blood tests: people must have documented chronic hepatitis C infection (repeatedly antibody positive or PCR positive).

2

Contraception: women of childbearing age undergoing treatment must not already be pregnant nor breastfeeding, and both a woman and her male partner must use effective forms of contraception (one for each person). 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.

Liver biopsy no longer a general requirement for treatment From 1 April 06, a biopsy examination is no longer a mandatory pre-treatment test for people wanting to access government subsidised S100 hepatitis 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.

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 industrysponsored 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 hepatitis 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.

CAUTION Treatment with Interferon alpha has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored.

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

Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or 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 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 sideeffects (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 hepatitis C condition with your GP or other health care providers?

•

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 hepatitis C?

•

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 hepatitis 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.

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support / info services NSW Hep C Helpline

Family Drug Support

For free, confidential and non-judgmental information and emotional support you can phone the NSW Hep C Helpline.

The service gives you the opportunity to talk with trained phone workers and discuss those issues important to you. It also provides referral to local health care and support services: • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers)

An organisation that 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.

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.

General Practitioners It is important that people find a well-informed GP who can support all long-term health care needs. Ideally, 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. GPs should be able to advise when it is necessary to seek specialist advice or further investigations or about research trial options. 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 hepatitis C training.

Alcohol & other drug services People who inject drugs and want to access peer-based information 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 services have a number of Drug and Alcohol clinics set up around the state. These centres offer confidential advice, assessment, treatment and referral for people who have a drug/alcohol problem or who have concerns about the use of these substances. The services are free and the staff are experienced in all aspects of drug and alcohol use and associated conditions. If you are worried about your own or someone else’s drug and alcohol problem, phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW), or contact your local hospital or community health centre who will also be able to advise you on your nearest clinic.

Family & relationship counselling If hepatitis 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 1800 801 578.

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Although hepatitis 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.

Other support & counselling

Community health centres

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December 2006

Traids is a statewide counselling, support and advocacy service for people with medically acquired hepatitis 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, and on either a face-to-face or telephone basis. They also run support groups and have a regular newsletter. Current hepatitis C information is available. For more information, phone 02 9843 3143 (Traids have a call-back policy for NSW regional callers).

Advice on food & nutrition Accredited Practicing Dietitians (APD) are qualified dietitians engaged in a formalised system of ongoing professional updating. 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 9798 or 1300 658 196 or www.daa.asn.au

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 hepatitis C, and to encourage and support health services working in these areas to respond appropriately and equitably. To access hepatitis 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.

NSW Health hepatitis C regional coordinators Phone the NSW Hep C Helpline (above) for information about possible local services in your area and/or contact details for your hepatitis C regional coordinator.

support / info services 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, (Australian-Standard-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 combining and sharing hep C information. http://hepcaustralia.com.au

Central Coast HOTS group HOTS: HCV and Offering Togetherness and Support. We are a Central Coast hep C support group who meet twice a month on the 1st Wednesday evening of the month from 7.30 to 9.00 pm, and the 3rd Tuesday morning of the month from 10.30 am to 12 midday.

These different times allow people who work or study to attend as well. We meet at the PSN House at North Gosford.

We also have guest speakers, general discussion and outings.

You will always get a cuppa.

For information, please contact Leslie on 4323 2905.

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 hepatitis C treatment & care. Based at John Hunter Hospital, Lookout Rd, New Lambton.

For information, please contact Margaret Croft on 4922 3429 or Tracey Jones on 4921 4789.

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.

Northern Rivers Liver Clinic Support Group An opportunity for people contemplating treatment, undergoing treatment and for those who have completed treatment to get know each other.

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.

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 hepatitis 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 Bruce on 9843 3143 or Susan on 9840 4110.

Westmead Hepatitis C Information Night Our Information Nights are aimed for people with hep C, families, friends and interested others. Our speakers talk about various aspects of hepatitis C such as: research about the virus, transmission, treatment and symptom relief. People who have hepatitis 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 Seng Kee on 9845 7706, Maria on 9843 3143, or Susan on 9840 4110.

Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital.

For further information, please contact Jo or Vince on 4734 3466.

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noticeboard Our loan library Library loans are available for up to 4 weeks. 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. Please enquire about postage rates when you call the Helpline.

Videos The Big Combo (HCCNSW, 2002): Approx 20 min; two people consider pharmaceutical treatment for hepatitis 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 hepatitis 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 min; real-life stories of people’s experiences with hepatitis C and interviews with health specialists. Suitable for individuals and health workers.

English. (Council members only)

Books Hepatitis C: An Australian Perspective (Crofts, Dore, Locarnini, 2001): Covers all aspects of hepatitis C clinical management, treatment and prognosis. Suitable for health workers. (Council members only) Hepatitis C, other liver disorders and liver health: A Practical Guide (Farrell, 2002): Covers all aspects of hepatitis C management, treatment and lifestyle issues, as well as other liver disorders. Suitable for individuals and health workers. (Council 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

Complaints If you wish to make a complaint concerning our products or services, please visit our website or telephone the office for more information: www.hepatitisc.org.au

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December 2006

The most precious gift Until recently, people living with hepatitis C have been advised not to donate body organs - because HCV would be carried across to the recipient. This advice has now changed and it is suggested that people with hepatitis C do consider the act of organ donation.

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

People seeking more information about donating their liver should contact Lifelink, the NSW/ACT network that coordinates organ donation. Phone 02 9229 4003.

HCCNSW

Volunteers sought for Hep C Review mailout We want to recruit volunteers from the readership to help with the ED56 mailout in mid March 07 and hope you might consider coming along.

We offer free training on the job, bottomless coffee, biscuits and air conditioning. Our mailout mascot Rusty will also be here.

For more information, phone Paul on 9332 1853.

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

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

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

Suburb/town State

Postcode

Home phone

Email:

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

Suburb/town State

Postcode

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Membership

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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.

Free copies of The Hep C Review required

Membership income assists the Council greatly in its work throughout the year.

For 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 hepatitis C publication in NSW, targeting both people affected by hepatitis 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.

1

2 5 10 20 50 80 160

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

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Free copies of The Hep C Review required

The Hep C Review

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1 2 5 10 20 50 80 160

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membership form / renewal / tax invoice 5. Separate donations are gratefully accepted by the Council.

2. Are you a new or existing member?

Donations of $2 and over are tax deductible.

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

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

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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:

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7. Payment, GST and postage instructions

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

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

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?

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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.

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

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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

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