Hep Review 57

Hep C skyrockets in Sydney Fatigue & illness Who owns your genes?

Women, hep C & HRT Nexavar extends survivial with liver cancer

The Hep C Review

Edition 57

June 2007

editor’s intro

I

t has been a busy few months here at the Hep C Council office. We have been inducting new staff (see p16) who have been settling into our team really well. We look forward to the resulting new initiatives that these new staff positions will allow.

One of these will be an awareness-raising resource, focusing on hep C combo treatment and targeted at clients of all the AOD (Alcohol and Other Drugs) clinics across the state. This sort of initiative follows closely the Council’s approach from the early days - that being, to tap into as many relevant health care networks as possible.

As well, some of us have been flat out preparing presentations for the upcoming National Hepatitis C Health Promotion Conference. These conferences and workshops are a very good way of showcasing individual projects so that other hep C workers from across Australia can find out what is being done and take away ideas for possible implementation in their local area.

Of course, our magazine team have also been busy putting together this edition of The Hep C Review and we hope that you enjoy your Winter read.

Paul Harvey, Editor

Hep C Council NSW website review

Council keyhole

An overview of the Council’s support services The online HCV peer support forum (www. hepcaustralasia.org) has over two hundred members.

People can start their own conversation thread or take part in existing threads, offer their point of view, support each other, upload photographs, chat on-line and share experiences. The forum was initiated by the Council and is community based with volunteer moderators.

This magazine, The Hep C Review, carries people’s stories and other articles of interest that serve as means of support. It also lists the range of support services throughout NSW, including support groups which are primarily run by health care workers.

Hep C Helpline (including the Prisons Hep C Helpline): Provides detailed information, support and referrals for any issue related to viral hepatitis, primarily hep C. Open Mon-Fri 9am-5pm (40 hours per week). Services are provided by full time paid staff. An extensive referral database of over 800 hepatitis/health related services is maintained, including a medical practitioner database of over 300 GPs, plus treatment clinics, counsellors, support groups, complementary therapists and AOD services.

About 2,800 phone calls are handled annually.

Email question service: People can email a question via the website (or info@hepatitisc.org.au) and receive a response within three working days. Email responses provide basic information and appropriate weblinks, including referral suggestions. The email service does not aim to provide support and email recipients are encouraged to call the Hep C Helpline for support, further information and referrals. About 200 emails are handled annually.

Drop-in service: People can drop in to the Council office and will be seen by a Hep C Helpline staff member either in the foyer or in the meeting room.

We do not provide counselling services or case management, but rather, provide information, support and referrals. Clients are provided with the same range and level of services that are accessed by people who phone the Hep C Helpline.

We are giving our website a thorough review and would love to hear what you think of it.

Just take a moment to visit.. www.hepatitisc.org.au ..and click on the gold star icon.

Please consider helping us. This is a once-everyfive-years review and your responses will help determine the look, feel and content of our website.

The Hep C Review

Edition 57

June 2007

Our Hep Connect Peer Support Program was launched on 15th March and is a NSW-wide 12 month pilot program. Clients call via the Helpline to arrange a volunteer call-back. Volunteers will phone the client at a prearranged time and will have a conversation where they can discuss their personal experiences and perspectives about the treatment process, and will chat about any issues related to living with hep C, providing personal support and encouragement.

Continued on page 23.

acknowledgements Calling all members

Hep C Review editor:

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

Look inside for your special Membership Page (p*).

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

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:

Seeking your personal story

Paul Harvey

Kristine Nilsson (AGDHA) Proof reading: Prue Astill Thuy Van Hoang Emma Ward

MARLTON comic:

Andrew Marlton

Personal stories provide a good balance to our information articles.

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

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

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

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

email:

Articles considered unnecessarily inflammatory or vilifying will not be published.

The deadline for contributions to ED58 is 13 June 2007.

We’re really looking forward to receiving your articles.

•

ED

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

Articles should be between 400-800 words.

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

phone:

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 57

June 2007

contents News

Who owns your genes?

37

A third of Australian prisoners test hep C positive

8

Viral confections

40

Australia says ‘no’ to offshore blood processing

8

My story

Australians urged to be more generous organ donors 9 Europe’s historic hep C declaration

9

Thousands of Swedes get hep C 10 Louie, me and hep C 10 Geno 1 treatment goes mini in Europe 10 UK contaminated blood inquiry begins 11 Chinese tainted blood leads to infections 11 Japanese win compensation package 11 New discovery leads to better research tool 12

Looking forward to Africa 18 Starting treatment

20

I’m not ready to let go

22

Drugs and jails do not mix

31

Vortices: a memoir

32

With child ... with hep C

38

Promotions Hep C Council NSW website review

2

Ontario investment in hep C treatment nurses 12

Looking for proofreaders

42

Charity begins at home 13

Call for genetic study volunteers

42

UK dentist cleared of transmission threat 13

HepConnect peer support project

42

Hep C runs rife in Romania 13

HALC legal centre

43

Spanish doctor faces two thousand life sentences 13

Online & connected

43

Making criminals out of victims 14

Research updates

Hep C debated in Pakistan 14

Children with HCV rarely symptomatic initially

44

Malaysian NSP expanded 14

Heavy drinking women with HCV cut decade off life

44

Women, hep C, fibrosis, menopause, steatosis and hormone replacement therapy

45

Shorter treatment effective for HCV geno 2

45

Psychiatric history does not predict treatment completion

46

Hep C treatment in a drug dependency setting

46

Lactulose improves quality of life for people with cirrhosis

47

Headache tablets take toll with vulnerable livers 17

Nexavar extends survival in people with advanced liver cancer

47

Features

Drug users have other health problems

48 48

Bad weather delays solo kayak bid 14 Give me a chance asks ex-drug user 15 Union backs new boss with drug past 15 Claims injecting room a failure ‘offensive’ 15 Drug policy gone Green 16 Harm minimisation balance 16 New staff join NSW Council team 16 Two readers join Ed Com 16 Double Bay hep C scare 16

New hep C drugs in the pipeline

21

Genomic test to predict fibrosis test

Liver health begins at home

24

Regular info

United Nations - reducing the harms of injecting drugs?

Canada plays conservative

25

New strategies for new threats

25

Talking prison needle and syringe exchange

26

Prohibiting human nature?

28

A view from the top

Council keyhole - overview of Council’s support services

2

Did you know? HCV prevalence rates among mental health service users 17 Hello Hep C Helpline - treatment sides

41

29

Member news

49

Sensationalism is no way to fight drug addiction

30

Interferon-based therapy

50

Hep C skyrockets in Sydney

34

Complementary therapies

51

Hep C policies failing as drug users fall ill

35

Support / info services

52

Allowing the spread of HCV?

35

Noticeboard

54

Fatigue and illness

36

Membership form / renewal / tax invoice

55

The Hep C Review

Edition 57

June 2007

letters

Jail crackdowns

Bishop bias

Figures provided by the Department of Corrective Services under freedom of information laws show repeated crackdowns on drugs in jails have had no significant effect on the number of positive (drug use) tests results. (Crackdowns failing in battle on drugs in jail SMH 10 April 2007)

I was recently invited to give evidence at the current Federal Government enquiry into the impact of illicit drug use on families and must express my concern about the attitude and behaviour of the chair, MHR Bronwyn Bishop.

In NSW prisons, 40% of men and 64% of women have hepatitis C, compared with 1-2% of the broader Australian population. Hepatitis C is transmitted when people share equipment used to inject drugs.

Justice Ministers across Australia remain fearful of industrial action by prison officers should they be seen to be “sending the wrong message” or being “soft on drugs” by following clear, evidenced based policy and practice from Europe regarding prison needle exchange.

But all the while, drugs get into jails and injecting drug use, hepatitis C transmissions and all their related harms continue to occur in Australian prisons and outside in the broader community after release.

Surely the time has come for prison authorities to be pragmatic, accept the evidence and engage in serious debate with the unions and provide education for the prisons workforce that acknowledges that needle exchange in prison will benefit the health and safety of prison officers and inmates alike?

Stuart Loveday, EO, Hepatitis C Council of NSW (Published in The Sydney Morning Herald, 14 April 07)

As chair, Ms Bishop showed a complete lack of impartiality, ignoring that the accepted neutral role of a chair required her to ask questions and listen to the people who were invited to give evidence. From the onset, she continually stated her own opinions, despite often displaying a lack of knowledge or understanding of the problems faced by families of drug users.

Further, she was prepared to debate issues to the point of expressing her disapproval of anyone daring to differ from the position she held. This occurred often, even though several witnesses were extremely knowledgeable, were in positions of importance and were held in high esteem in the field of alcohol and other drugs.

Her continued attacks on Professor Margaret Hamilton, recognised as an international authority in the field, both nationally and internationally, are inexcusable. Public attacks from the position of the chair in any enquiry are not acceptable.

Ms Bishop’s failure to switch off her mobile phone at any time during the day displayed a lack of manners and commitment to the task. At one stage when a witness was responding to a question asked by her, she actually turned her back to speak on her mobile.

[At another point] she was texting when another witness was making an opening statement.

Of even more concern was the lack of sensitivity and compassion shown by her to both drug users and their families. It fills me with apprehension that a person showing Ms Bishop’s ignorance, bias and lack of willingness to listen openly and learn, can formulate policies affecting people of Australia J Alcock, WA (Published in The West Australian, 23 March 07.

Also carried in Family Drug Support’s FDS Insight newsletter)

The Hep C Review

Edition 57

June 2007

letters

Are we being duped about treatment success rates?

It seems to me that some drug companies are cooking the books. I think there has actually been little improvement in cure rates and that there has been an increase in side-effects and adverse outcomes.

The recommended therapeutic period for resistant genotypes (1&4) has been increased from six months to 12 months.

Side-effects tend to build up over time, but there is only a tiny proportion of people who would fail after six months but go on to succeed if treated for 12 months.

If there is no significant drop in viral load after six months there is no therapeutic reason to continue.

Side effects would likely increase, but the likelihood of clearing is virtually zero. Any responsible GP would recommend discontinuing under such circumstances So a large proportion of those with resistant genotypes do not complete the 12 month course and only those who complete the course are counted when assessing the success rate.

Thus, the success rate for, say, genotype 1, goes up from around 10% to around 45%, even though the chance that someone starting the course will clear the virus has hardly changed at all.

On the other hand, the chance that someone will suffer serious side-effects without clearing the virus increases, as there is a higher proportion of patients subjecting their bodies to 12 months rather than six months of potentially debilitating therapy (though this would probably be offset somewhat by the more stable interferon serum levels with pegintron and pegasys).

I was hoping this letter might spark discussion of this among the hep-c support community.

Micheal, NSW

The Hep C Review

Edition 57

June 2007

Comment I believe that Micheal (left) has confused what happens in practice, guided by our s100 regulations and what happened in the clinical trials. The success rates quoted by the companies are from their clinical trials and are about 40-50% with 48 weeks combination therapy for genotype 1 and 75-80% for 24 weeks combination therapy for genotype 2 and 3.

These results are from a number of large trials with the two different pegylated interferons and a few different doses of ribavirin.

The clinical trials were done first and they were used to prove to the authorities that the drugs work. When the trial results are analysed there are two ways of doing the analysis, the most rigorous is the “intention to treat” method where everyone who started the medicine is included in the results whether they completed the treatment course or not, and the other way is the “on treatment” method and this includes all the patients who were able to complete the treatment.

The authorities know about these methods and they take them into account when they licence the drugs.

The s100 regulations, which say people should stop treatments if they do not have particular responses at certain times during treatment (and what I think the writer of the letter is referring to) were devised by the Australian pharmaceutical benefits scheme to guide doctors in their prescription of the drugs. The guidance is based on avoiding giving patients drugs with bad side effects, when the patients response showed that they would be unlikely to get further benefit if the drugs were continued.

•

Dr Cathy Pell is a visiting fellow at the National Centre in HIV Epidemiology and Clinical Research, and works in private practice at a medical clinic in Darlinghurst, Sydney, and in the Education and Training team at the Australasian Society for HIV Medicine.

letters

Hep C awareness still needed

Daily Telegraph and ABC Insiders on hep C

In her letter mistakenly linking a recent story about a person living with hepatitis C and the debate on recycled water, Jennifer Wayman’s ‘Recycled Water a Health Risk’ (TB, February 14) has demonstrated the need for more public education about the hepatitis epidemic. Hepatitis C is a virus transmitted by bloodto-blood contact.

On Sunday’s The Insiders current affairs show (18 Mar), the ABC’s Michael Bowers spoke with Daily Telegraph cartoonist Warren Brown about the NSW state election campaign. The water crisis was discussed with hepatitis C being jokingly highlighted as a possible danger associated with Peter Debnam’s water recycling approach.

This means blood infected with hepatitis C must come into direct contact with the bloodstream of another person to effect transmission. The hepatitis C virus cannot, as Ms Wayman states be caught from water fouled with human waste’, and the case of the person living with hepatitis C at Kingaroy has little relevance to the debate on recycled water.

Hepatitis C is a virus transmitted by blood-to-blood contact. This means blood infected with hepatitis C must come into direct contact with the bloodstream of another person to effect transmission. The hepatitis C virus cannot be caught via recycled drinking water.

The less common and less harmful hepatitis A virus can potentially be transmitted through contact with contaminated faeces, but does not cause chronic liver disease. For the facts about viral hepatitis in Australia, please see www.hepatitisaustralia.com

Clint Ferndale, CEO, Hepatitis Council of Queensland (Published in the Townsville Bulletin, 20/2/07)

The less common and less harmful hepatitis A virus can potentially be transmitted through contact with contaminated faeces. Unlike hepatitis C, hepatitis A does not cause chronic liver disease and a vaccine is available.

The ABC has previously produced some accurate and informative reports on the hepatitis C epidemic in Australia via the 7:30 Report and the Triple J Hack current affairs program. Over 250,000 Australians are living with hepatitis C and responsible and factual reporting helps to combat stigma and discrimination.

It is a shame to see your previous good reporting undone by use of the hepatitis C virus as a poor political punchline.

Helen Tyrrell, CEO, Hepatitis Australia (Sent to ABC TV but as yet, unpublished)

Hep C psychologists I would like to make contact with any social workers or psychologists in the hep C field who are interested in forming an informal email and telephone support network. There used to be a network along these lines, but the contact has dropped off and staff turnover has made it difficult to reconnect.

So... if you are a social worker or psychologist working in hep C, and consent to your details being passed on to other clinicians for the purposes of support and networking, then please reply to me at: gabrielle.Murphy@hnehealth.nsw.gov.au

Gabrielle Murphy, Hepatitis C Social Worker, Hunter New England Health

The Hep C Review

Edition 57

June 2007

news A third of Australian prisoners test hep C positive AUSTRALIA - One in three inmates of Australian prisons have hep C, new statistics show.

A sample of prisoners from NSW, Queensland, Tasmania and Western Australia returned rates of 34 per cent for the blood-borne disease.

Infection numbers were almost double this among inmates who regularly injected drugs before they were incarcerated.

Previous estimates have put the prison infection rate at between 40 and 60 per cent.

The study, lead by the University of NSW Centre of Health Research in Criminal Justice, also found that one in five had hepatitis B but only one per cent were HIV positive.

Researchers tested almost 500 volunteers from a crosssection of Australia’s 25,000 prison population.

Results showed NSW inmates were “significantly more likely” to test positive to hep C than prisoners in other states.

Most sufferers were aged over 30 and had been in prison before.

The findings, published in the Australian and New Zealand Journal of Public Health, show the need for better harm minimisation practices in prisons.

Authorities should also consider routinely including prisoners in the national surveillance of hepatitis and HIV, the study’s lead researcher Tony Butler found.

“That would provide a more complete picture of blood-borne virus epidemiology in Australia,” Dr Butler said in the study.

•

Abridged from www.smh.com.au/ NSW figures are even more alarming - with 40% of male prisoners testing positive and 64% of female prisoners testing positive. ED

Australia says ‘no’ to offshore blood processing AUSTRALIA - The Commonwealth Government has announced that the processing of Australian blood for plasma products will remain in Australia.

The Government released the Flood Review of plasma fractionation arrangements in December last year and wrote to all state and territory health ministers to seek their views. The state and territory governments have not agreed to introducing changed fractionation arrangements for Australia.

Since there is no consensus for change, the current arrangements whereby Australian plasma is processed within Australia will continue. Under the current Plasma Products Agreement, CSL Bioplasma in Victoria processes plasma collected by the Australian Red Cross Blood Service to make plasma products for the Australian community.

The Flood Review made a number of recommendations on blood sector issues where there is the potential for reform. The Commonwealth Government will work with states and territories to address all of the review recommendations so that Australia’s safe and affordable blood system is sustained into the future.

Under the Australia-United States Free Trade Agreement (AUSFTA), the Commonwealth Government agreed to undertake a review of Australia’s plasma fractionation arrangements and to then recommend to the states and territories that future arrangements for the supply of such services be done through tender processes consistent with AUSFTA Chapter 15 (Government Procurement). The Commonwealth Government has complied with these commitments.

Under the 2003 National Blood Agreement, and as recognised in the AUSFTA, the Commonwealth and all state and territory governments must jointly agree if any change in policy is to take place.

An independent committee chaired by Mr Philip Flood AO conducted the review.

•

CDHA press release, 30 March 2007 For more info, also see “US free trade agreement flags offshore blood,” ED54, p11 5. ED

The Hep C Review

Edition 57

June 2007

Australians urged to be more generous organ donors AUSTRALIA - Western Australian doctors say a lack of donor organs could be linked to people wrongly assuming that young children, elderly and very sick people were not suitable donors.

In a bid to drive up donor rates, the Australian Medical Association is calling on people to talk to their doctor about donating organs and tissue in the event of their death.

WA president Geoff Dobb said there were a lot of misconceptions about the donor process and as a result, many West Australians were dying each year because life-saving organs were not available.

Professor Dobb said children under 12 could become organ donors with consent from their parents, and this could help the many children waiting for a transplant.

Even people with diseases such as hep C could be donors if their organs went to people with the same condition.

Last year, about 700 Australians had their lives saved or improved by organ or tissue donations - more than 80 were from WA. •

Abridged from The West Australian, 21/2/07.

This is a pretty important issue for us as hep C has become the most common reason for liver transplants here in Australia.

Readers with hep C are urged to register as organ donors. Fore more information, see “The most precious gift,” p54.

news Europe’s historic hep C declaration EUROPE - The European Parliament formally adopted a written declaration on hep C with some 470 MEPs signing the declaration. The declaration calls on the European Commission and Council of the European Union to recognise hep C as an urgent public health issue and identify priority actions in programmes of future Council presidencies.

It also calls for the adoption of a Council recommendation on hep C screening, ensuring early diagnosis and wider access to treatment and care.

The written declaration calls on the Commission and Council to respond to the recommendations of its June 2006 report on protecting European health care workers from blood-borne infections due to needlestick injuries and facilitate further research on treatment for hep C patients co-infected with HIV and/or Hepatitis B. Twelve millions persons in Europe are infected with HCV. This is an urgent issue with hep C being a disease which attacks the liver and usually leading to chronic hep C possibly causing cirrhosis, liver failure or liver cancer, thus increasing the need for transplantation. Hep C is often not detected so that many patients remain undiagnosed while the diagnosed patients frequently suffer from stigmatisation.

“According to the British Hepatitis C Trust, only one in 10 people with hep C have been diagnosed. Extended and reinforced screening efforts are therefore essential to guarantee early diagnosis and treatment, and to prevent a further spreading of the virus,” claimed John Bowis (EPP-ED, UK).

“Hep C is also the first cause of liver transplant in the EU, as there is still no vaccine, screening and organ donations remain the most efficient medical practices to stop the disease. It is therefore crucial to reinforce European cooperation,” added Frederique RIES (ALDE, BE).

•

Abridged from http://www.europarl.europa.eu

The Hep C Review

Edition 57

June 2007

news Thousands of Swedes get hep C SWEDEN - The Swedish National Board of Health and Welfare has revealed that thousands of people in Sweden could have been infected with hep C after being given blood transfusions between 1965 and 1991, and the risk has been known for years.

It is thought that up to 23,000 people who might have the liver disease could be traced. In the past it was thought it might be ethically wrong to contact patients and tell them they were at risk, as there wasn’t much that could be done to help those who were infected.

But the health board says now there are relatively effective treatments, patients should be traced and informed.

The Swedish National Union of Hepatitis C patients is welcoming the recommendation but says people should have been told before to reduce suffering and to help stop the illness being passed on to others.

•

Abridged from http://www.sr.se via www. hcvadvocate.org

Louie, me and hep C UK - When Gemma Peppe needed a subject for her MA in documentary research, she decided to use her own battle with the potentially fatal liver condition hep C. She hoped it would be an opportunity to raise awareness about the condition.

Gemma attracted the support of the Hepatitis C Trust and the UK Community Channel, and her film became a documentary of her treatment over a year - and how it affected her 14-year-old son Louie.

Now ‘Louie, me and hep C’ - a documentary narrated

by Gemma and including her video diary - is being used to educate the public and medical professionals.

Charles Gore, from the UK Hepatitis C Trust, said the film will do a great deal to improve understanding of the condition.

“It gives a remarkable insight into what it is like to have hep C. •

10

Abridged from http://news.bbc.co.uk via www. hcvadvocate.org. It is hoped that the documentary may become viewable on the internet.

The Hep C Review

Edition 57

June 2007

Geno 1 treatment goes mini in Europe Switzerland. Some European hep C patients with difficult-to-treat genotype 1 who respond quickly to treatment can benefit from a shorter and simplified course of therapy, following a recent EU decision.

With the new approval, a subset of patients with genotypes 1 and 4 HCV who achieve rapid viral response can now receive a shortened, 24-week duration of treatment. This is half the normal treatment duration.

The EU approval is based on data from two pivotal clinical trials for PEGASYS plus COPEGUS. Results from these trials show that among patients who achieved a rapid viral response (undetectable viral load at week 4) in the first month of treatment up to 93 per cent of patients with genotype 1 HCV with a low pre-treatment viral load and 83 per cent of patients with genotype 4 were cured following only 24 weeks of therapy - a similar cure rate to that seen following 48 weeks of therapy.

“This is excellent news for patients with hep C,” said Dr Peter Ferenci, Professor of the Department of Internal Medicine IV, Gastroenterology and Hepatology, at the University of Vienna, Austria. “This means that patients can find out within one month of starting therapy if they have an excellent chance of being cured and can benefit from a shortened treatment duration. This is likely to encourage patients to seek treatment and motivate them to stay on therapy.”

•

Abridged from a PR Newswire press release on behalf of Roche Pharmaceuticals, 6 Mar 2007.

news UK contaminated blood inquiry begins

Chinese tainted blood leads to infections

UK - An independent public inquiry into the supply of contaminated National Health Service (NHS) blood to haemophilia patients is set to investigate the circumstances surrounding the supply of contaminated NHS blood and blood products and make recommendations to assess the needs of patients and bereaved families.

CHINA - An unknown number of people in China have contracted hep C after a company distributed tainted blood in one of its immune system-boosting antibody products.

During the 1970s and early 1980s, nearly 5,000 people were exposed to hep C and of these more than 1,200 were also infected with HIV. More than 1,700 patients have since died, and many more are terminally ill.

The inquiry is being funded privately, and not by the government who said treatments were given in “good faith”. BBC’s Newsnight programme, though, has reported seeing documents suggesting experts were aware of the threat at an early stage, but transfusions were not stopped.

Labour peer Lord Archer of Sandwell, a former solicitor general, is leading the inquiry which is due to report in late summer.

Lord Archer said the first purpose of the inquiry was to find out why and how this contamination occurred to help those affected come to terms with what had happened.

He added: “Hopefully, we may discover something that will help for the future and we can learn some lessons.”

Former health ministers had also offered to help the inquiry, Lord Archer added.

Meanwhile former health minister Lord Owen said he had secured extra money in 1975 to help avoid using blood donations from abroad, but had later found out it had not been spent.

Lord Owen said: “If we had gone in for selfsufficiency, I am pretty confident we would have had a substantial reduction in contaminated blood supplies.

“It would not have completely ruled it out, but I think much fewer people would have got hep C and fewer people would have got HIV.” •

Abridged from http://news.bbc.co.uk/go/pr/fr/-/2/ hi/health/6563669.stm Also see about Australia’s blood supply inquiry - ED*, p*. ED

Sales of the products have been halted while recipients are being tracked down, according to a statement from Chinese authorities.

The statement said Guangdong Bioyee Pharmaceutical had acted illegally in its production of immunoglobulin. It also said the company could not produce a complete set of production and inspection records for the products.

Health scandals due to the unhygienic sourcing of blood have increasingly emerged across China in recent years. Local authorities allowed blood stations collecting blood through unsanitary methods to be set up in the 1980s to mid-1990s, leading to thousands of people becoming infected with HIV/AIDS. •

Abridged from http://news.yahoo.com

Japanese win compensation package JAPAN - The Tokyo District Court ordered the state and three drug makers to pay a combined 259 million yen (AUD$2.6mill) in damages to 13 of 21 plaintiffs infected with the hep C virus from tainted blood products.

The verdict is the third in as many rulings handed down in a series of similar lawsuits that found the government and pharmaceutical companies guilty of not regulating the use of unheated coagulants despite being aware that such products might contain the hep C virus.

•

Abridged from The Japan Times, 24 March 2007 via www.hcvadvocate.org

The Hep C Review

Edition 57

June 2007

11

news New discovery leads to better research tool

Ontario investment in hep C treatment nurses

UK - A new way of growing viruses in the laboratory developed by Japanese researchers could spell hope for people infected with hep C, only half of whom currently respond to drug treatments, scientists announced at the Society for General Microbiology’s 160th Meeting at the University of Manchester, UK. “Until now we have been unable to grow HCV in the laboratory, which has delayed our development of new treatments. Now, thanks to the system from Japan, we can explore the full life-cycle of the virus”, says Dr Stephen Griffin from the University of Leeds, UK. The scientists have identified a key protein, called p7, which helps the viruses grow by transporting molecules across membranes. A drug targeting a similar protein in the influenza virus was one of the first licensed anti-viral treatments. The Leeds research team has discovered that while the hepatitis viruses are growing, the same protein is crucial for stabilising new virus particles. This offers the hope that blocking its action could provide a new and effective way of combating hep C. The new laboratory culture system will allow scientists to study the complete virus life-cycle, including how it builds new virus particles and how these in turn infect new cells.

“We have shown that the p7 protein can form seven sided pores in the cell membranes and alter acidity within the liver cells. We think this is crucial in forming new virus particles, so it is an ideal target for new types of drugs”, says Dr Stephen Griffin.

“A drug called amantadine, which can be used successfully by doctors against influenza infections, specifically blocks the action of p7. Encouragingly, some clinical trials of amantadine used alongside current treatments have improved patients’ response.

New drugs based on amantadine offer exciting possibilities for the future treatment of hep C. •

12

Abridged with thanks from http://www. medicalnewstoday.com/medicalnews. php?newsid=64831via www.dailydose.net

The Hep C Review

Edition 57

June 2007

CANADA - The McGuinty government is helping people with hep C get the nursing care and support they need to complete their treatment regimen and lead healthier and more active lives, Health Minister George Smitherman announced recently.

“People with hep C often find it difficult to stick to their treatments because of the side effects they suffer,” said Smitherman. “We want to provide patients with the nursing care and support they need to complete their treatment program and improve their chances of beating this disease.”

The government is providing $2.3mill to employ up to 20 nurses who will provide support to approximately 1,500 patients a year in Ontario and ensure they follow their hep C treatment plans.

Nurses will help manage patients’ treatment, consulting with the treating physician who may decide to change the course of treatment depending on the type and severity of the side effects.

A provincial advisory committee will identify where nurses will be located based on hep C statistics on rates of infection and identify local agencies that can best support additional care needs of people undergoing treatment for hep C. An estimated 110,000 people in Ontario have hep C and of those, 35,000 don’t know they have the virus.

Today’s initiative is part of the McGuinty government’s plan for innovation in public health care, building a system that delivers on three priorities - keeping Ontarians healthy, reducing wait times and providing better access to doctors and nurses.

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Abridged from http://www.newswire.ca

news Charity begins at home

Hep C runs rife in Romania

UK - A manager facing credit card debts has been jailed for five years after admitting stealing more than £400,000 from a government compensation fund for people who had caught hep C through blood transfusions.

ROMANIA - About two million of Romania’s 22 million people are carrying some form of hepatitis, in the highest infection rates in Europe. Between 6 to 8 per cent suffer from hepatitis B, and between 8 to 12 percent from hep C, making liver disease the main cause for hospitalisation.

Prosecutors said that Keith Foster had exploited loopholes in accounting systems and diverted charity cheques into his own account after becoming company secretary of the Skipton Fund - a charity that paid compensation to hep C sufferers.

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Abridged from http://news.bbc. co.uk/go/pr/fr/-/2/hi/uk_news/ england/essex/6496729.stm via www.hcvadvocate.org

UK dentist cleared of transmission threat UK - There is no evidence that a dentist with hep C infected any patients, a report by the National Public Health Service for Wales says.

Half of the 5,000 patients at the unidentified Gwynedd dental practice were tested for the virus.

Eleven patients did return positive results, but all had different types of hep C from the dentist.

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Medical reports suggest that most people in Romania got infected during the 1980s because of poor conditions in hospitals and polyclinics and negligent medical practices such as using non-sterile syringes and transfusions with untested blood.

Compulsory testing for the two viruses and hep B vaccination campaigns were only introduced in the 1990s, and then mostly to reduce risks for AIDS patients, whose condition is seriously aggravated if they carry hepatitis as well. The ministry of health has still not launched a campaign to inform the public how widespread these infections are.

A report presented at the National Conference for Liver Diseases in Bucharest September 2006 details the effects of the hepatitis viruses. The national health system has resources to treat just 6 to 8 percent of the infected people, Dr Adrian Abagiu from Matei Bals said. Only the most serious cases get the needed treatment, a combination of stimulants for the immune system and substances that limit reproduction of the virus.

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Spanish doctor faces two thousand life sentences SPAIN - Anaesthetist Juan Maeso, on trial for infecting 276 patients with hep C. The anaesthetist Juan Maeso, the only person accused for the massive infection of 276 patients with the hep C virus in Spain’s Valencia Region in the late 1990s, has told the court that he is innocent and should be acquitted.

He is accused of infecting the patients during surgery at La Fe public hospital, and the private clinics Casa de Salud, Virgen del Consuelo and Clínica Quirón.

Maeso made his statement on the final day of his trial, which is now ready for sentencing. More than 350 people have been called to take the stand in the past 18 months, from the patients affected, to health staff and expert witnesses.

157 lawyers are involved in the case, along with 111 solicitors.

It is suspected that Dr Maeso, who for a long time has been dependent on morphine, administered part of the contents of syringes containing opioid analgesic to himself before giving the rest to his patients using the same syringe.

He faces more than two thousand years in prison if found guilty.

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Abridged from http://www. ipsnews.net

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

Abridged from http://news.bbc. co.uk

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news Making criminals out of victims

Malaysian NSP expanded

INDONESIA - An approach that sees drug users treated like criminals instead of victims is the main cause of overcrowding and HIV/AIDS related deaths in prisons, the Indonesian National AIDS Commission says.

MALAYSIA - The Needle and Syringe Program for drug users which was carried out on a pilot project in Kuala Lumpur, Penang and Johor since February 2006 will be extended to Kuantan in Pahang, Kota Baru in Kelantan and Alor Star in Kedah this year.

Inang Winarso, assistant to the commission’s deputy secretary, said that National Police chief Sutanto’s 2002 instructions to police to get tough on drugrelated cases had resulted in thousands of already ill drug users being imprisoned.

Health Ministry Parliamentary Secretary Lee Kah Choon told the Dewan Rakyat today that 3,000 users are targeted for the programme this year.

He said that nationwide, prison sentences for drugrelated cases had increased fivefold, from 7,211 to 34,166 in the last five years.

He said the pilot project carried out in Chow Kit in Kuala Lumpur, Jelutong in Penang and Ngee Heng in Johor last year involved 1,380 drug users and was run by the Malaysian Aids Prevention Foundation.

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“Only two percent of the convicts are drug dealers, while the others are drug users,” he said during a discussion with officials from the Justice and Human Rights Ministry, prison authorities and nongovernmental organizations.

Abridged from The New Straits Times, 12 April 2007 via www.dailydose.net

HIV infection in Indonesia spreads fastest among drug injecting users who share needles. Drugs are easily available in prison but needles are scarce and inmates often share them.

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Abridged from The Jakarta Post, 13 April 2007

Hep C debated in Pakistan PAKISTAN - Health experts warned that hep C and other liver-related disease were assuming alarming proportion in Pakistan.

At a seminar organised by Sarwar Zubari Liver Centre, Prof. Masood Hameed Khan expressed concern over the fast increase in hep C and other liver-related diseases in Pakistan.

He and other experts rejected the notion that impure water and unhealthy food was the main cause of the disease instead arguing that use of unsafe syringes is responsible for spreading the disease.

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Abridged from www.onlinenews.com.pk

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June 2007

Bad weather delays solo kayak bid NEW ZEALAND - An attempt by a New Zealander to circumnavigate the Auckland Islands in a kayak has been delayed because of bad weather.

Jack Finn, 23, who suffers from mild haemophilia and hep C, was due to travel to the sub-Antarctic island group on his support ship from Bluff harbour at noon on Wednesday.

Mr Finn says the solo voyage is a world first and says the 250km journey around the island group should take about two weeks.

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Abridged from Radio New Zealand, 11 April 07.

Give me a chance asks ex-drug user AUSTRALIA - The new head of the NSW Education Department Michael Coutts-Trotter, a former convicted drug user, has appealed for people to “give him a chance” but he said he accepted public interest in his criminal background was perfectly legitimate.

The state opposition has questioned the appointment of Mr Coutts-Trotter as the department’s directorgeneral, because the former Labor staffer spent two years and nine months in jail in the 1980s on drug charges.

Mr Coutts-Trotter said the director-general of education was one of the most important jobs in government.

“I just hope I’m given the chance to prove myself by performing rather than being pre-judged.”

“I think the counter-view is my life shows that redemption is possible, that a criminal mistake, serious as it was, can be paid for and you can move on from it,” he said.

“If this publicity about my background does anything I hope that it reassures people that change is possible, that there is reason to hope.”

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Abridged from The Daily Telegraph, April 11, 2007.

news Union backs new boss with drug past AUSTRALIA - Public servants in NSW have spoken out in support of the embattled new head of the NSW education department, Michael Coutts-Trotter.

Mr Coutts-Trotter, husband of federal Labor MP Tanya Plibersek, has been criticised over a drug-crime conviction, as well a lack of experience in education.

A former heroin user, he served almost three years in jail in the 1980s after being arrested when he was 19 for conspiracy to import narcotics.

But Public Service Association general secretary John Cahill says the newly appointed director-general of the Department of Education is a first-rate manager and a strong leader.

“PSA members who have worked under Mr CouttsTrotter during his time as director-general of commerce have only good things to say about him,” Mr Cahill said today.

The union has also rejected arguments that Mr CouttsTrotter’s lack of experience in education makes him unsuitable for the job.

“Running a department is a lot different to running a classroom, and a proven public sector manager is the right person for this position,” Mr Cahill said in a statement.

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Abridged from The Sydney Morning Herald April 12, 2007

Claims injecting room a failure ‘offensive’ AUSTRALIA - Claims that Sydney’s supervised injecting room is not helping drug drug users into rehabilitation are offensive, the head of the facility says.

NSW Opposition Leader Barry O’Farrell said recently he would vote to close down the injecting room in Kings Cross because it was not helping drug users get into rehabilitation.

Dr Ingrid Van Beek, director of the Medically Supervised Injecting Centre (MSIC), said it was “offensive” to the staff at the centre to imply they would not attempt to refer drug users to rehabilitation programs.

“We have 230 visits a day among drug users who would be otherwise be injecting in back streets, unsupervised, less safe situations,” Dr Van Beek said.

Dr Van Beek said that in six years, the MSIC had made contact with 10,000 drug users and more than 1000 of them had received referrals for rehabilitation.

Another 11 per cent had been referred to medical treatment, with some going on to receive rehabilitation, she said.

The centre is under review, with a report due by 1 May. It is expected to be tabled in parliament in June, ahead of a vote on whether to extend the facility’s trial period, which expires on October 31.

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Abridged from The Herald Sun, 23 April 2007.

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news Drug policy gone Green AUSTRALIA - The NSW Greens recently defended a controversial election policy to decriminalise personal drug use.

Greens leader Lee Rhiannon said they would go after drug dealers with tough penalties, but that locking up individual users would not remove drugs from our streets.

“For individual drug users, we need to be giving them treatment,” the Upper House MP said.

“What is also needed are prevention initiatives that educate the target populations,” she added.

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Abridged from The Herald Sun, 14 March 2007.

Harm minimisation balance AUSTRALIA - The Alcohol & Drugs Council of Australia has highlighted some recent findings from the Drug Policy Modelling Project.

Under our current national harm minimisation drug policy, only 3% of government expenditure on drugs is for harm reduction programs, and the vast majority is spent on law enforcement and customs (56%), prevention (23%) and treatment (17%).

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For more information, see What is Australia’s “drug budget”? The policy mix of illicit drug-related government spending in Australia. Moore, T.J. (2005). Monograph No. 01: DPMP Monograph Series.

Fitzroy: Turning Point Alcohol and Drug Centre.

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New staff Double Bay join NSW hep C scare - A treatment Council team AUSTRALIA described by the Australian AUSTRALIA - 2007 is shaping up to be a big year for the NSW Council, with the recent allocation of $250,000 funding (non recurrent) from NSW Health for new and enhanced services.

The funding will allow us to expand our work across all three of our main program areas and will include: Appointment of an additional Education & Workforce Development project officer, expanding our work for the first time into the non-health hep C related workforce.

Appointment of a new Information and Resources project officer to expand our capacity to reach marginalised communities (e.g. hep C positive clients of drug and alcohol services).

The developments increase the Council’s paid staff team to 12.

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HCCNSW

Two readers join Ed Com AUSTRALIA - Following the Council’s call in the previous edition for a volunteer to join our Editorial Committee, we’d like to congratulate Thuy Van Hoang and Tom Pryce, and welcome them onboard.

Van is a student from Sydney, and Tom is an NSP worker from the Northern Territory and both have taken to their new role with gusto.

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HCCNSW

June 2007

Medical Association as “controversial” is allegedly behind the recent Eastern Suburbs hep C scare based at a Double Bay surgery.

The treatment involves vitamins and minerals delivered intravenously and was the speciality of Dr Danny Hameiri who is now under investigation by the NSW Department of Health for possible links to a hep C outbreak among his former patients.

Three women have been infected and public health professionals have contacted another 127 patients who received injections at Dr Hameiri’s general medical practice between late 2004 and late 2006.

A spokesperson for Dr Hameiri, who counts Susan Renouf and Aussie Home Loans founder John Symond among the clinic’s clientele, said the doctor uses intravenous vitamin and mineral injections to minimise the side effects of a number of conditions.

Advocates of the treatment claim it can assist with weight loss and general wellbeing.

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Abridged from The Wentworth Courier, 4 April 2007.

news Headache tablets take toll with the vulnerable livers

Did you know?

AUSTRALIA - Paracetamol (acetaminophen), the drug commonly found in headache tablets, has been linked to fulminant hepatitis - a relatively rare form of acute liver illness.

A study in Melbourne found a hep C antibody positive prevalence rate of 19% in an acute inpatient unit. (The prevalence rate in the Australian population as a whole is 1.14%).

Doctors are being urged to exercise caution when prescribing paracetamol following cases of some patients suffering accidental poisoning after taking only the recommended dose of the painkiller, often sold under the brand Panadol.

Abridged from “Hepatitis C in people with mental illness: how big is the problem and how do we respond?” Australasian Psychiatry. Vol 14, No 4.

374-378. December 2006.

Evidence shows that hep C prevalence rates are considerably higher among mental health service users with low prevalence disorders (such as schizophrenia) than in the general population.

A report published in The Medical Journal of Australia found people who didn’t eat enough, drank a lot of alcohol or took certain medications were vulnerable to toxic effects from paracetamol.

Between 1989 and 2004, 42 patients were referred to the Victorian Liver Transplant Unit with paracetamolinduced acute liver failure. In 11 of these (26%), the poisoning was clearly accidental. Eight patients recovered spontaneously, one survived after undergoing liver transplantation, and two died.

Severe life-threatening liver injury from accidental paracetamol poisoning appears to be quite uncommon in Australia, nevertheless, it is a readily preventable syndrome of which both patients and the medical profession should be made more aware.

In particular, clinicians should be cautious about prescribing regular doses of paracetamol for pain control in malnourished or fasting patients, and need to appropriately counsel patients who are regular users of the drug. Elderly people with kidney or heart and lung problems may also be at increased risk.

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Compounded from an article from http://www. news.com.au/ (via www.hcvadvocate.org) and www.mja.com.au/public/issues/186_07_020407/ lub11145_fm.html Readers with chronic hep C don’t need to rush to the medicine cabinet and throw out their supplies of paracetamol. This story does not relate to hep C except to say that we probably don’t need any additional stress on our livers. If you feel you might be at risk for paracetamol-related liver damage, for more information please speak to your doctor. ED

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my story

Looking forward I

was told that I had liver cancer, and that the only chance of survival was a transplant. To do that I had to go through the transplant assessment, which checks whether you’re physically and mentally able to go through the operation. It took about six months to be able to get to the assessment, which then took a whole week. It’s pretty rigorous. You’re admitted to hospital, and just about every organ in your body, especially your heart and lungs, are looked at. You’re X-rayed, MRI-scanned, everything, and you also have thorough psychological testing. There are a lot of psychological issues that go with receiving a body part from someone else.

After those five days of testing, your results go to a committee, I think, and then I was lucky enough to find out on the Friday, as I was leaving hospital, that I was on the list. I was given my little pager. You have to carry that absolutely everywhere, and you’re not supposed to be more than a couple of hours away from the hospital, in case you get the call that a liver is available.

For me, the wait between getting the pager and getting the call was about 12 weeks. I went on the list at Easter, and I got the transplant in the June long weekend. The waiting time is really, really weird. First I felt really edgy, but after a couple of weeks I settled down. I thought, “OK, I’m in this for the long haul.” My pager went off some time during that 12 weeks—no-one knows why—and there was 10 minutes of panicking before I got Libby at the unit and found out that they hadn’t sent a message. That brought me back down to earth a bit.

I found after about six weeks that I was almost looking at people to run over with my car, if they looked a possible fit. You just get sicker and sicker. I knew that my time was running out. With a liver tumour, it has to be under a certain size for you to have a transplant, under 5cm, and mine was 4.9cm at that stage, so I

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was very aware that I didn’t have long to go. After a while, though, there’s an acceptance—you know you’re not going to run anyone over, you’re not going to wish anyone dead, so I became pretty calm. I was telling myself, “This is just going to have to happen,” although I was also aware it might not happen. I was prepared either way, I guess.

Once I got the call, and had the operation, I woke up in intensive care feeling better than I had in years— mentally and physically. I was so pleased it had finally happened. I knew I had someone else’s liver, but it didn’t feel like an odd fit—it didn’t feel like a part of somebody else. I just felt a lot fitter, immediately.

People were saying how much better I looked, and they actually meant it, not just being nice to someone in hospital. “Wow, Mum’s got pink skin and shiny eyes—she’s not all yellow!”

I felt fantastic from then on—within 10 weeks I did the City-Bay walk. And that’s gone from strength to strength. The only thing that holds me back from doing things now is my own laziness. There’s no physical reason for not doing anything.

d to Africa In my case the liver’s been accepted fantastically.

There have been no rejection problems. There were some medication hiccoughs, getting the dosages right, but nothing directly related to the transplant. The anti-rejection drugs were difficult to begin with, when your body gets used to them, and you’re very nervous of damaging the new liver. For a while, anything that didn’t feel a bit normal I automatically assumed was something terrible. But in my case I’ve come, in a couple of years, from a very high to a very low dose.

I was on over 100 tablets a week immediately after transplant, but now I just take two a day.

Apart from having a compromised immune system, there are no other problems whatsoever—except that I can’t drink grapefruit juice, which is a shame, because I love grapefruit juice. It interferes with the medication. Other than that, it’s been amazing. People think you’ll be an invalid after the transplant, but I’m doing things now, like the City-Bay, I couldn’t have done before the operation. It’s an opportunity. You can carry on with a great quality of life—there don’t have to be any limits.

my story

I still have hep C, but I now have a perfectly healthy liver. The hep C can be a lot more aggressive the second time around, so like anyone living with hep C, I’m very careful about drinking. For me, that’s also out of respect for the person whose liver I have—I don’t want to do anything that could be seen as ungrateful. I so appreciate the value of what I’ve been given.

The whole experience, for me, was incredibly positive.

I don’t think I’m the only one. I have known people who have died after transplant—I think they had other complications, which made it much harder for them— but for me it’s been almost too good to be true. I live a normal life now. I look at the impact it’s had, not just on me, but my family, people I work with, people in the street. For some people I seemed basically dead, and it’s almost as though I just came back to life. I’ve been able to see my children start high school—there’s just so much that the person who decided to donate, their family, have let me see. Every day I wake up wishing there was something I could give back to them. The only thing I can do, I think, is to live, and live well, in honour of what they did for me. You just have to live each day.

My goal was to get to Africa by the time I was 36.

Now, I’m a few years overdue, but I’m going to get there. I’m going to go and see the elephants. Things like that give you reasons to fight when you’re so sick, when it’s hard to remain positive. For a lot of people, they don’t have supportive people around them, and it’d be lovely to find some way of addressing that.

That’s what I’d love to be able to do.

Lynn, SA Abridged from Hepatitis C Community News, No 35, March 2007. Hepatitis C Council of SA. Interview by James Morrison.

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my story

Starting treatment S

itting at the dinner table on the night that I’m due to start treatment and I look at the collection of three tablets of Ribavirin that I have to take twice a day for the next 48 weeks. They don’t move by themselves. I pick them up and a feeling comes over me that’s like going over the top of the first big hill on the Big Dipper. Except it’s not as much fun. I smile at my wife, pop them into my mouth, swallow, and I’ve started treatment. I’m committed. Later that evening I inject myself with the other part of the combination treatment, Interferon, and wait for the aches and pains that it causes. But I don’t get any aches and pains that night. Don’t worry though, they do come later.

For the duration of treatment I intend to eke out a living as a ‘research consultant’.

Which sounds interesting, and it is, but for me it’s not going to give me enough work to make a living from. But it will allow me to have long rests which is very important. The first day after I start medication I have a meeting to discuss some work that a client wants me to do. At the meeting I’m a complete zombie.

They follow up by taking me to lunch with a group of the staff so I can meet everyone.

Conversation with me is ‘difficult’.

The Hep C Review

There is, however, a large and difficult project that should have been over before now, and for which I’ve already been paid. Well, the client ran over time, and as a result here I am in the early stages of treatment trying to cope with a fair bit of work. Plus the people I’m working for have to cope with me because anger is a frequently reported side effect of treatment, and it’s one that I have. Extreme fatigue, let me say that again, extreme fatigue, and of course body aches and pains, are some of the other wonderful side effects that have me in their grip. Sometimes by three o’clock in the afternoon I’m ready for bed. Sometimes by 10 in the morning. If I let my head go I can sleep 20 hours a day and only wake up for meals. I have enough energy to wash myself and to walk the dog. That’s it. The need to earn a living is a real inconvenience right now I can tell you. My wife finds me to be grumpy and boring these days and I have to admit that I’m not much fun around the house, and, given that I’m not earning much money or doing any housework, I’m not much use either.

Lots of people say that the first 6 weeks are the worst. I, and my wife as well I suspect, are hoping that things look up from there.

Gren, NSW This is the second instalment in Gren’s ongoing treatment journey.

Also see ED56, p18.

I appear to be ‘not with it’.

They must be worried about hiring such an idiot.

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We walk back to the office, and I leave for home to start on the work (yes, I work at home, which also helps me to cope). Hopefully I don’t look like too much of an idiot when they look at what I’ve done.

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New hep C drugs in the pipeline New drugs need to pass several stages in a thorough development process before they hit our pharmacy shelves.

F

or a new treatment to become licensed for use, there are several stages of testing to assess both the safety and effectiveness of the therapy.

Cell culture systems – often new antiviral drugs are tested in cell culture systems to assess whether they inhibit replication of a virus.

Animal studies – once there is evidence of activity in cell culture systems the safety of the drug is initially examined in animal studies.

Phase I human trials – if animal studies have not demonstrated safety concerns, the next step is to examine safety in humans. This is generally performed by giving the drug for a short period (days to weeks) and increasing the dose of the drug in “cohorts” of people in the study in a stepwise fashion to see if any side effects are experienced at different dosing levels. If significant safety concerns are evident at lower doses, the subsequent higher doses are not given. At this stage early antiviral efficacy is also examined.

Phase II human trials – if phase I trials provide no significant safety concerns and evidence of antiviral efficacy, then larger trials with longer duration of therapy are conducted. These studies are to gather further safety data, as some side effects may only be evident with more prolonged use, and more closely examine efficacy.

Phase III human trials – if phase II trials provide no significant safety concerns and further evidence of antiviral efficacy, then even larger trials are conducted. These trials generally compare the new drug to the “standard of care” treatment. For example, if a polymerase or protease inhibitor demonstrates promise in phase II trials, it would then be compared to pegylated interferon and ribavirin therapy in phase III trials.

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Above article abridged from a trial press release, sourced from the internet.

feature Drug Name

Drug type

Phase I trials (Initial, small, safety-focused studies) A-831 Viral protein inhibitor Alinia S M Non-nucleoside Bavituximab Anti-phospholid Belerofon Interferon CGI-5005 Therapeutic vaccine IL-29 Interferon ITMN-191 Protease inhibitor NOV-205 Immunomodulator Oglufanide Immunomodulator Oral interferon alpha Interferon PeviProtm Therapeutic vaccine R7025 Interferon R7128 Polymerase inhibitor XTL-2125 Polymerase inhibitor XTL-6865 Monoclonal antibody

Phase II trials (Larger, longer, safety and efficacy studies) ACH-0137171 Replicase inhibitor Celgosivir Glucosidase inhibitor EMZ702 Interferon enhancer HCV-796 Polymerase inhibitor IC41 Therapeutic vaccine Locteron Interferon Medusa interferon Interferon Mulitferon Interferon Omega interferon Interferon R1626 Polymerase inhibitor SCH 503034 Protease inhibitor Suvus Antiviral Telaprevir Protease inhibitor Valopicitabine Polymerase inhibitor VGX-410C Viral protein inhibitor Viramidine Ribavirin pro-drug

Phase III trials (Large efficacy trials) Albuferon Rebif

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Interferon Interferon

Above table abridged from www. hepatitismagazine.org

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my story

I

’m Annie and finished my 48 weeks treatment in January 06 and have cleared - for which I am very grateful.

I find it very hard, though, to talk openly about how I ‘really’ feel. I just cringe when people say to me ‘so it was all worth it then’ - and I just choke on my words!!

Physically I can now say that I do feel heaps better. It has been a long slow physical recovery for me and was probably not until the 12-month post treatment mark that I could truly say that I felt back to good health (however I am 50 so this may have something to do with it and had the virus since my very early 20’s).

My neutrophils stayed low until the 12 month mark when they did a mighty jump up (it was at a different laboratory so I am a bit sus on that) but the specialist said that treatment can result in neutrophils remaining low and that he had one other case of that. No negative effects however. I can honestly say that within that 12 month post time, each month I could notice physical improvements. I am still dealing with some muscular/ joint aches but its difficult to say that these are the result of treatment or just general ageing. It is hard to know the difference.

My major concern has been my emotional well-being.

I felt treatment was ‘soul destroying’ and I just have not been able to reconnect to that inner part of me - emotional and spiritual. I guess I have tried to make sense of it thus: I have a lot of ‘stuff’ in my life. I thought I had dealt with it but know that it is and always will be part of who I am.

Because I had hep C for a very long time and had known that I had it for a good ten years before treatment, I used to ‘hang’ a lot of ‘me’ on hep C. I had hoped for great things - being hep C free - but found out that I wasn’t so different and that I had to accept me as me. But, for the life of me, I still don’t know who me is!!

It’s like the treatment took my last resources - I feel more brittle, certainly more empty, harder and less hopeful - than I did before treatment. Maybe it is because I have lost the ‘hope’ that I will be different without the excuse of the hep C. I keep waiting hoping that I will find the soul that I used to feel - not necessarily the same but one nonetheless. I feel like I am drifting.

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From a more measurable level - my concentration has improved to what it was on treatment but not where it was before treatment. I do get stressed easily ( just ask my kids), I am now taking St John’s wort in an effort to ‘lift’ myself because my attempts with antidepressants have been disappointing in the past. I walk through life with my head down rather than skip through life full of the joy of it - its a bit like an endurance test trying to get to the end.

My lack of concentration and cognitive prowess is frustrating - I used to be quite a bright intelligent person but now see myself as not quick on the uptake and not reliable in holding information. Sometimes I can but more often I don’t. This is a marked change. My mood can plummet and I can feel in the depths very quickly (does not seem to be related to hormonal swings and I now recognise it and ‘hold my breath’ until it passes. I say to my partner ‘I am having one of my times when I want to sit on a jack jumper’s nest - being highly allergic to jack jumpers!!

What else.... I have thought a lot that it feels like post traumatic stress syndrome .. knowing a bit about psychology I have some knowledge of this. I cannot think about my time on treatment without getting quite emotional and I am sure that those around me did not appreciate just how hard it was for me.

I am sure that other thoughts will come to mind later. I do not know how to make sense of it - I’m not sure that I would ever recommend treatment especially 48 weeks worth to others, but then others aren’t me and may well have a completely different journey to mine. Its so hard to know just what is the treatment and what is the person. I just feel that it took that last of my resources and has left me empty and as yet I just haven’t built up sufficient resources to rebuild myself.

I have no doubt that the medicos have little awareness of the outcomes of treatment other than relapse or clear. Not really of much interest to them and a bit too complicated for anyone else. Maybe its unrealistic to expect others in the ‘helping professions’ to understand - cause hey! “I should be so happy that I cleared” eh!! And I feel so dog-gone ungrateful to complain when I have cleared.

So I don’t know if any of this will make sense to anyone. My guess is that most people who are at my stage, post-treatment, have long ago moved on and I feel so guilty and weak that I still lurk around, because I’m just not quite yet ready to let go.

Annie, SE Australia For more info about the hepcaustralasia online community, see p43.

Council keyhole An overview of Hepatitis C Council NSW support services - continued from page 2 All volunteers have been through a course of treatment (with various outcomes). A process has been established to provide ongoing support to volunteers, including a training workshop and opportunities for debriefing. A Volunteer Agreement clearly defines the role and boundaries of volunteers. The program has a treatment support focus and it is expected that many clients will access it for peer support while they undergo treatment or prior to treatment. 8 volunteers have joined the program. 6 volunteers will make callbacks from their own home phone when prearranged with Helpline staff (phone expenses are reimbursed). 2 volunteers will come in to the Client Services office to make client call-backs and assist with administrative duties.

Hep Connect is a good complement to the current range of support options for people related to treatment (such as clinic staff, support groups, online discussion forums, family/friends, counsellors, the Hep C Helpline, etc.) and will be especially useful for people who are feeling isolated due their region or circumstances. The Hep Connect volunteers do not provide detailed information about hep C and it’s management, they are not counsellors, and will refer clients back to the Hep C Helpline or to their respective treatment centre staff if the client is requiring information or support that is beyond the role of the volunteers. As at 22nd March 11 clients have accessed the peer support volunteers.

Advocacy services: The Council occasionally provides limited advocacy services to individual clients. Examples of this include: our providing a generalist letter about common hep C symptoms or common treatment side effects that the client can use to support his/her application with Centrelink, Department of Housing or an employer (the client is encouraged to obtain a more individualised support letter from their health care worker or counsellor/support worker); our handling of complaints by a client about a specific service or worker - these can be passed on to the relevant people to enable them to improve their services (if appropriate and with client consent, though anonymity can be maintained if required).

The Council is continuously proactive in community advocacy activities which can be seen as a means of supporting our communities (e.g. advocating for expanded treatment models).

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HCCNSW

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feature

Liver health begins at home The Canadian Liver Foundation’s healthy home checklist encourages us to make positive lifestyle choices - where we live and how we live.

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ew people realise that each day they make decisions that affect their liver health. To kick off Canadian Liver Health Month, the Canadian Liver Foundation has prepared a Liver Healthy Home Checklist to demonstrate how everyday activities or common-place products can all have positive or negative effects on the liver.

“There is a misconception that only alcohol impacts the liver,” says Gary Fagan, President, Canadian Liver Foundation, “but your choices of what to eat, how to treat an illness, or even your extracurricular activities can help or hurt your long-term liver health.”

The liver plays a critical role in nurturing and protecting your body so it only makes sense to learn what you can do to take care of it. The more you know, the better prepared you can be.

Liver Healthy Home Checklist The Canadian Liver Foundation invites Canadians to tour their homes using the Liver Healthy Home Checklist to see how they can make their homes and daily routines liver healthy. The checklist, along with other resources and liver health information tips, is available on www.liver.ca Kitchen * Fill your cupboards and refrigerator with low fat, high fibre foods and keep salty and sugary snacks to a minimum. A healthy, well balanced diet can help keep your liver functioning at peak levels and you, in turn, will feel better and have more energy. On the other hand, an unhealthy diet can lead to obesity - a leading cause of fatty liver disease.

Living Room * If you drink alcohol, do so in moderation. No more than one to two drinks at a time and not on a daily basis. Women process alcohol slower than men and therefore tend to be more susceptible to alcoholrelated liver damage.

Bathroom * Store medications and vitamins out of reach of children or in child-proof containers.

Adult medications and supplements can do serious harm to a child’s liver if they are accidentally swallowed or are used inappropriately to treat an illness.

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* Do not mix medications and/or herbal supplements without talking to your doctor or pharmacist. Prescription and non-prescription medications and herbal supplements can do damage to the liver if not taken as directed. Never mix medication with alcohol. Combining alcohol and acetaminophen, for instance, can lead to acute liver failure. * Always wash your hands after going to the bathroom. Hepatitis A is a liver disease that can be spread when someone does not wash their hands properly after going to the bathroom and then touches something you eat.

Laundry Room/Garage * When cleaning or painting, ensure the room is well-ventilated and/or wear a mask. Since the liver has to detoxify everything you breathe in, exposure to airborne chemicals can damage your liver.

Backyard * Take precautions to avoid exposure when using weed control chemicals or spraying for bugs. Another option is to investigate more organic methods for maintaining your lawn and gardens. * Take every opportunity to get outside and enjoy some exercise. Exercise helps keep your body - and especially your liver – strong and better able to defend itself against viruses, disease and pollutants.

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Abridged from http://www.newswire.ca

feature

United Nations - reducing the harms of injecting drugs?

Canada plays conservative

New strategies for new threats

In contemplating the fate of Insite - Vancouver’s supervised injection site - the Canadian government concluded in 2006 that the risk of offending the international community by keeping Insite open had more serious consequences than closing it over the objections of the B.C. government, according to internal documents obtained by The Vancouver Sun.

In relation to the assertion by the International Narcotics Control Board (INCB) that Canada’s Supervised Injecting Room (SIR) encourages illicit drug trafficking, Dr Robert Haemmig (who established the first SIR in Berne, Switzerland in 1986) and Dr Ingrid van Beek (the Medical Director of Australia’s first SIR in Kings Cross) have published the following information.

A Health Canada document, which describes and evaluates the risks associated with both options, warned that refusal to extend Insite’s licence would simply result in the opening of an illegal facility.

With considerable risks inherent in either choice, Prime Minister Stephen Harper’s government - asked to extend the permit by up to five years - found a middle ground by extending the facility’s permit only until the end of this year. The government also refused to renew the $1.5 million in research funding provided by the former Liberal government when the Downtown Eastside site opened for a three-year trial in 2003.

In the past, the Harper government has criticised harm reduction measures such as Insite, which focuses on reducing the risk of overdoses and HIV infection rates among drug users.

The government said it shouldn’t be in the business of facilitating drug use, and instead should focus on enforcement, prevention, and rehabilitation.

The head of the United Nations’ drug control agency, the International Narcotics Control Board (INCB), criticized the Harper government earlier this month for “encouraging illicit trafficking” by allowing Insite to operate legally.

The INCB and US President George W. Bush’s administration have led the international battle against harm-reduction initiatives.

•

Abridged from The Vancouver Sun, 26 March, 2007 via www.dailydose.net

“In its 1999 report the [INCB] of the United Nations Office of Drugs and Crime (UNODC) contended that [SIRs] contravene Article 3 paragraphs 1 (c) (iii) and (iv) of the 1988 UN Convention by publicly inciting or inducing as well as aiding and abetting, facilitating or counselling the illicit use of drugs for personal use and strongly urged countries to discontinue their operation.

All countries with SIRs [which currently include Switzerland, Germany, the Netherlands, Spain, Australia, Canada, Norway and Luxembourg] are signatories to all UN drug control treaties (although some have not yet ratified the 1988 Convention)...

However, a report prepared by the Legal Affairs Section of the UNODC for the INCB in 2002 concluded that drug policy must come up with new strategies to cope with new health threats like growing rates of intravenous HIV transmission. The report stated that “It could even be argued that the drug control treaties, as they stand, have been rendered out of sync with reality, since at the time they came into force they could not possibly have foreseen these new threats” (UNODC Legal Affairs Section (2002) The flexibility of the treaty provisions as regards harm reduction approaches. Document E/INB/2002/W.13/SS5.).

On SIRs it specifically stated: “It would be difficult to assert that, in establishing drug injection rooms, it is the intent of parties to actually incite or induce the illicit use of drugs, or even more so, to be associated with, aid, abet or facilitate the possession of drugs. On the contrary, it seems clear that in such cases the intention of governments is to provide healthier conditions for IV drug [users], thereby reducing risk of infections with grave transmittable diseases and, at least in some cases, reaching out to them with counselling and other therapeutic options.” (Haemmig, R., van Beek, I. Supervised Injecting Rooms. Chapter 13, Injecting Illicit Drugs. Blackwell Pub, Addiction Press. 2005, 160-169).

It is curious that the INCB seems to be ignoring its own legal advice regarding SIRs, but thankfully this has not been a barrier to their establishment in 8 countries where 76 SIRs have operated for up to 20 years.

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HCCNSW

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Talking prison ne syringe exchang Stuart Loveday discusses why we need needle & syringe exchange in Australian prisons.

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revalence of HCV is much higher than in the broader Australian community with around 34% of Australian prisoners having hep C compared with 1-2% of the general Australian population. This provides great risk for prisoners who enter prison hep C negative then begin to inject drugs while in prison.

It is acknowledged that drugs still find their way into prison and inmates continue to inject them. Figures provided by the NSW Department of Corrective Services in 2007 show that repeated efforts to curtail drugs in jails have no significant effect.

The first-line defence aimed at preventing hep C and HIV infections among people who inject drugs in the broader community is the access to sterile injecting equipment via needle and syringe outlets. These are an established part of health care service provision but remain a particular health service that is not provided in jail.

Prison incarceration involves a loss of liberty but this should not lead to a denial of basic health care services. Government-approved prison based needle exchanges have shown that needle sharing leading to blood borne virus transmissions can be reduced whilst not increasing overall drug use within prison.

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PNSE in Europe The first prison needle and syringe exchange was introduced in Switzerland in 1992. It began as a pilot project and was based on a pragmatic approach to reducing harm to prisoners and the wider community.

Such programs now exist in nearly 70 prisons in six European countries including in all prisons in Spain and more than eight prisons in Switzerland.

A review of studies in three European countries found that staff were generally supportive of the programs.

Occupational health and safety for prison staff is improved by providing a more controlled working environment.

Luxembourg’s CPL Prison in Schassig – Luxembourg’s largest prison housing >650 prisoners started in August 2005.

How it works: Prisoners have to make a request to the prison doctor to participate in the programme. Based upon an evaluation, the prisoner is given a harm reduction kit containing two syringes in a plastic case, along with safer injecting paraphernalia including distilled water, alcohol swabs and ascorbic acid.

Once enrolled in the programme, exchanges of used syringes for new ones are made in the prison medical unit.

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eedle and ge Programme syringes that are safely stored inside the case will be left alone by prison officers, and won’t be reported. However, syringes found outside the case will be confiscated, and the prisoner will face disciplinary sanctions for improper and unsafe storage.

The consumption and possession of drugs remains illegal in the prison.

According to the prison, “The syringe exchange program is an efficient way to reduce the harms of drug abuse. It reduces the sharing of syringes and needles, and therefore it reduces the risk of infectious diseases’ transmission (hepatitis, AIDS and others) among detainees who inject drugs. The exchange of syringes does not jeopardize the security of the staff or the detainees; it enables a safer work and life environment.”

Current situations in Australian prisons In 1991, prison officer Jeff Pierce was stabbed by a prisoner using a needle as a weapon. He contracted HIV, developed AIDS and subsequently died. This tragic situation occurred however under the system that is currently in place – the unofficial, unsterile and highly dangerous needle ‘exchange’ that exists in Australian prisons.

Michael Barnes, Queensland’s coroner, makes a sensible and pragmatic call for the provision of sterile injecting equipment in Queensland prisons.

Regrettably, Queensland’s Prisons Minister Judy Spence has joined all of Australia’s other Justice Ministers in rejecting such recommendations.

While it is an uncomfortable reality, drugs do find their way into prisons and prisoners do inject them, and as many as 10% of prisoners who inject drugs start to inject for the first time in prison. On this basis, the Prime Minister’s own drug advisory council ANCD recommended PNSE piloting, in at least one prison in each state and territory.

Australian justice and health ministers would do well to learn the lessons from overseas and adopt these pragmatic, evidence based programs in Australia. If drugs cannot be kept out of prisons, authorities have a duty of care to protect prisoners from the life long sentence of being exposed to a blood borne virus whilst in prison.

•

Stuart Loveday is Executive Officer of the Hepatitis C Council of NSW

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Prohibiting human

Criticism of harm reduction and drug law reform may be clever politics in the short term, but th drugs has been an expensive way of making a bad problem worse, says Dr Alex Wodak.

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ood-altering drugs have been used by people in virtually all countries throughout history.

Anyone who believes that this entrenched pattern over thousands of years can be simply and suddenly ended by government fiat is naive in the extreme. From time to time, countries prohibit certain drugs. Alcohol was illegal in the USA from 1920 to 1933. Opium for eating was taxed and legal in Australia until 1906 and was then banned. Heroin was prohibited in Australia in 1953. Before 1953, heroin could be lawfully prescribed by doctors in Australia.

There is no pharmacological or public health logic to the classification of some drugs as legal and others as illegal. These decisions about declaring different drugs in different countries to be illegal or legal at different times have all been arbitrary historical accidents more influenced by politics than logic or science.

While there is a strong demand for a drug, a source will always emerge. If there is no legal source, illegal sources will emerge. Suppliers of illegal drugs compensate for the risk of getting caught and punished by increasing the price of the drug. Higher prices increase the profits made. The higher the risk of getting caught and the more severe the punishment, the higher the price and the higher the profit. The higher the profit, the more people who are attracted to becoming drug traffickers and the greater the quantity of drugs available for sale.

This is the Achilles heel of drug prohibition. What has often happened in drug prohibitions is that dangerous drugs were driven out by even more dangerous drugs. In Asia over the last half century, anti-opium policies have had pro-heroin effects. During alcohol prohibition in the United States, beer disappeared and was replaced by wine and spirits. In Australia in the last seven years, amphetamines have taken over during the heroin shortage.

Whatever we may think about drugs, they are markets with buyers and sellers just like real estate or ballpoint pens or any other commodity. Access Economics estimated in 1997 that the market for mood altering drugs in Australia was worth $29 billion a year. Drugs that we call illicit accounted in 1997 for $7 billion of that $29 billion total. These days, since the fall of the Berlin Wall, few are now brave enough to attempt to defy powerful market forces. Only North Korea, Cuba and drug war warriors still believe that they can ignore powerful market forces.

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Everyone else knows that sooner or later it is inevitable that a heavy price will be paid for trying to ignore powerful market forces. Harm reduction, a widely and possibly often wilfully misunderstood term, is a simple concept. It means that we focus primarily on reducing the adverse consequences of drugs, such as deaths, disease, crime and corruption.

The alternative to harm reduction is use reduction, as in the war against drugs. In use reduction, we focus primarily on reducing drug consumption, whatever the impact on deaths, disease, crime and corruption. The most important point about harm reduction is that the scientific debate about harm reduction is now over.

Harm reduction is recognized widely to be effective, safe and cost effective.

Five Labor and three coalition governments, in Tasmania, Queensland and the Northern Territory, adopted harm minimisation as our official national drug policy in April 1985. Every state and every territory government since then, whatever its political hue, has adopted and implemented harm minimisation. The current federal government, despite its public stance, sensibly but unfortunately discreetly, continues harm reduction in several forms. These include a $10 million a year enhancement of stateterritory needle syringe programs, generous funding to support HIV prevention among injecting drug users in Asia, vigorously carrying the torch for harm reduction in debates within the UN system and by diverting drug-using offenders from the criminal justice to the drug treatment system.

According to a study commissioned by the Commonwealth Department of Health, from 1988 to 2000, needle syringe programs in Australia prevented 25,000 HIV infections and saved up to $7.7 billion.

It said that by 2010, needle syringe programs will prevent 4,500 deaths from AIDS. If anyone in this day and age wants to scrap harm reduction in this country, they will have to take personal responsibility for the HIV epidemic that Australia then has to have.

There is growing realisation that relying on drug law enforcement, customs, police, courts and prisons to control illicit drugs in the last several decades has not worked, is not working and can never work. In the decades of global drug prohibition, drug production and consumption has soared around world. It is now a global $322 billion a year industry, of which 26 to 58 per cent may be profit.

nature?

he war against

Drug problems have got worse and worse over the decades. Governments have spent more and more taxpayers’ money. This is a typically high-taxing, big government approach. Many fiscal conservatives, such as the Nobel prize winning economist Professor Milton Friedman, condemn these futile attempts to arrest and imprison our way out of our drug problems.

What we have to do is redefine drugs as primarily a health and social issue, with funding for health and social interventions raised to the level enjoyed by drug law enforcement. Criticism of harm reduction and drug law reform may be clever politics in the short term, but the war against drugs has been an expensive way of making a bad problem worse. If drugs are treated primarily as a public health problem, as suggested recently by Justice Don Stewart, deaths, disease, crime and corruption will fall, and I expect that drug consumption will also fall once the huge profits of the industry are removed. In the current system, criminals and corrupt police control the drug market. Regulating this market mainly using public health measures is the least worst way of responding to these drugs.

There are two ways of responding to difficult problems in our community such as illicit drug use. One way is to stress the community’s condemnation of the rejected behaviour - in this case, the consumption of prohibited substances - but place less emphasis on the actual outcomes of the prohibition. The other way is to focus on reducing the harms of the rejected behaviour - in this case, reduced overdose deaths, disease, crime and corruption - and investing in what science shows us works while respecting the human rights of all of our citizens, including those citizens who still choose to use prohibited drugs.

Harm reduction and drug law reform are steadily gathering national and international support. Support for zero tolerance and a war against drugs approach is steadily declining. What we need now is to find ways so that good policy can also be good politics.

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feature

A view from the top:

a statement from the Prime Ministerial advisory Australian National Council on Drugs (ANCD) The Australian National Drug Strategy is supported by the Federal, State & Territory Governments, as well as the ANCD and the many sectors involved in addressing drug and alcohol problems in Australia.

This support has been met with an unprecedented level of funding from the current Australian Government.

As a result, Australia now invests heavily in reducing the supply of illicit drugs and successfully targets those that seek to profit from the manufacture and trafficking of illicit drugs.

We also see a much greater level of investment in providing treatment and support for those affected with drug and alcohol problems, as well as making significant investments to inform and educate the general public, and particularly young people, to prevent drug and alcohol problems.

Finally for those unable or unwilling to cease their drug use or seek treatment and support there is investment in harm reduction programs to minimise the risk of HIV, hep C and other harms associated with problematic drug use.

This balanced approach taken by Australia has been very effective. There have been dramatic declines in illicit drug use in Australia, dramatic declines in drug related deaths and we still have one of the lowest rates of HIV amongst drug users in the Western world. Importantly, we also have the infrastructure and partnerships in place to deal with new drug problems when they appear.

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Abridged from http://www.ancd.org.au/media/ media103.htm

Dr Alex Wodak is President of the Australian Drug Law Reform Foundation.

Missing hep C harm reduction centrespread This edition of The Hep C Review doesn’t carry a harm reduction centrespread poster as our graphic designer is currently overseas. The poster series will resume within our following editions.. ED

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Sensationalism is no way to fight drug addiction Drug use disorders are a health problem that cannot be solved by harsh laws or sensationalism, writes Andrew Macintosh.

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Unfortunately, it is a rare event when any government body decides to make drug policy recommendations that are based on evidence. The report was not received warmly by the Government.

In 2003, the House of Representatives standing committee on family and community affairs inquired into drug abuse and produced a report that was in keeping with the history of drug policy. It called for the abandonment of harm minimisation as the principal objective of the National Drug Strategy. The committee wanted prevention and abstinence-based treatment to be the focus of government policy.

The House of Representatives Standing Committee on Family and Community Affairs has also launched another drug-related inquiry, seemingly to counter the recommendations made by the joint committee.

And in its recent hearings, the chairwoman of the committee, Bronwyn Bishop, attacked representatives from the Department of Health for publishing documents containing harm minimisation messages, saying “this document is full of harm minimisation.

The Prime Minister said that he is opposed to harm minimisation and that we do not have it.”

rugs policy arouses strong emotions. People see drug users and fear the unknown.

The traditional response from politicians, particularly conservatives, has been to exploit these fears for political gain. The outcome has been an overreliance on law enforcement as a means of stamping out both the supply and use of harmful drugs.

This position is partially reflected in the Federal Government’s “tough on drugs” policy. Penalties have been increased for drug offences, funding has been increased for drug law enforcement, the Government has run several prevention campaigns based on dramatic images of the dangers associated with drug use and money has been directed to abstinence-based treatment services. All the while, harm reduction and other treatment services have remained chronically under-funded.

Given this history, the recently released report on amphetamines and other synthetic drugs by the federal Parliamentary Joint Committee on the Australian Crime Commission is a brave document.

Most notably, in contrast to the report from the House of Representatives Standing Committee, the committee unanimously supported harm minimisation and recommended that “harm-reduction strategies and programs receive more attention and resources”.

In its conclusions, the committee said “prohibition, while theoretically a logical and properly intentioned strategy, is not effective”. It also argued that “the current national approach to illicit drugs - supply reduction, demand reduction and harm reduction - will achieve greater outcomes if a better balance between these approaches can be reached”. In common parlance, this means there should be less emphasis on law enforcement and more on education and drug treatment.

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Professor Margaret Hamilton, a respected drug expert with more than 30 years’ experience in the field, received a particularly harsh broadside for also using this type of terminology, as well as for making the sensible observation that moral considerations have historically played too great a role in drug debates.

Bishop is on a mission to ensure the Government’s drug prevention programs are sensationalised, going as far as calling for a campaign based on the message that “this is going to scramble your brains”.

In this climate, the Government’s drug policy is unlikely to change markedly in response to the joint committee’s recommendations. Yet the members of the committee have signalled that there are now politicians from across the political spectrum prepared to listen and act on the evidence.

It is hoped there will come a time when enough politicians recognise that drug use disorders are a health problem that cannot be solved by harsh drug laws or sensationalised advertising.

Andrew Macintosh is deputy director of the Australia Institute.

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Abridged from http://www.theage.com.au/news/ opinion/sensationalism-no-way-to-fight-drugs/200 7/03/19/1174152967041.html via NSP Forum

my story

Drugs and jails do not mix

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y names is Carlos and I am currently in jail due to drug problems. I contracted hep C when I was about 15 years of age - I am now going on 30 years old and have not had any problems with my health due to hep C. I started to get involved with regular exercise when I was around 18 years old and since then have become extremely fit and I think this has helped me fight off any symptoms.

I do believe that the more I continue to keep fit and healthy, the longer I will live without any complications to my health. The only problem I face is that I drink around six cups of coffee a day and I also smoke 15-20 cigarettes daily.

I am on the methadone program and this will help me avoid heroin use once I am released from jail.

I get very angry, upset and sad with the government’s attitude toward prisoners and drug users. I feel they do not want to listen to us - when they should listen to people who know and have been around the drug culture all of our lives.

I see it day-in and day-out and I actually witnessed it only a few hours ago .. at least eight prisoners shooting up drugs in a cell with the same needle and then when they were finished, another few prisoners entered the cell and then they had their gear. This is an everyday occurrence and it sickens me to imagine how many diseases are going around just within this prison.

This was only one out of four pods within a unit block and there are another four sections in the whole jail. There are so many jails that I have been to and witnessed guys sharing needles just to shoot up; what is going to happen once someone who has HIV gets

put inside and wants to have a shot? God help us all - that’s all I can say about the matter.

The government mustn’t care about the community because whenever we speak up and talk about what’s going on in jail, we are branded as liars and judged straight away because we broke the law! Some of us are not bad people; we just made a few bad choices and mistakes. We just need some help to break the cycle of drug addiction, crime, prostitution and antisocial behaviour.

Some prisoners do deserve to be locked up for the things they have done, but many of us just need a hand up. Some of us have never had a chance to be given trust by the community, our family or from society.

I just pray and hope that the government would have some kind of compassion and soften their hearts instead of always trying to be hard on law and order.

Sure, I believe that people have to pay for their wrongs but I don’t believe that once we go to jail then are released we should continue to pay and suffer for the rest of our lives. That takes away any kind of hope to try to rehabilitate and become a good member of society.

The way things are at the moment, at the end of the day, the wider community suffers because people who have not done anything wrong will have to deal with all these angry and bitter people who get out of prison only to live next door to them.

I pray that the government would look into having some kind of needle exchange program inside jail.

Drugs in jail should be a medical thing instead of looking at it as just criminal. But it seems the government would rather look tough and be seen to not endorse drug use in prison. I guess they don’t want to show to the public any admission that there is access to drugs inside as it makes them look incompetent. So they sweep it under the carpet and allow prisoners to be infected with HIV and hep C allowing the infected prisoners to go back to the community where they will spread it and pass it on to other people.

So c’mon government, let’s get serious and think of the damage being done! Stop all the red tape and beating around the bush! You owe it to the community to protect and preserve life and stop all these kinds of infections.

Carlos, NSW

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my story

Vortices: a me Succubus: ‘that which lies below’ (Latin)

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he years have numbered one score and five, almost to the day, since I fled Sydney’s darkened alleyways cloaked and choked in the inarticulate wog girl shame of who I was. I journeyed by mail train, longing to be engulfed in the tropical steam trailing in tattered drifts outside my window, as I lay through the long night, hungry and huddled around a `hot box’ for meagre warmth. My creaking polished ‘dog box’ mausoleum lulled me, carrying me through unfamiliar terrain as I awaited my rebirth into new adventure. Hording my secret desire to begin again, to start afresh, to write a script of my own choosing.

It was within the leafy canopy of a Toowong `Queenslander’ that I became enchanted with views of the rambling graveyard. And it was here that my succubus - ‘that which lies below’ - stole seductively into my life on bat wings of heroin desire. The ethereal allure of her hypnagogic nocturnal visitations were persuasive. Her supernatural beauty caressed me, separating me gently from my slumbering body with a new lover’s sighing promises.

She anticipates my resistance and thrusts me to the bed. Why am I resisting? I have forgotten. I only know I must... must... Must I? Must what? But before my thoughts can clarify she has become a crushing, claustrophobic pressure on my chest. I feel I am suffocating. Fearfully I look in my lover’s eyes. Her unearthly beauty has metamorphosed. Grown huge and angry. Commanding and compelling.

I turn my head when her lips seek my failing breath, but I can resist no longer. As she looms above me, shapeshifting grotesquely from Succubus to Incubus, I am only dully aware of the demon’s prick, impregnating me with the seed of this shapeshifter’s viral load.

And as the Incubus courses through my blood, I now know my sexual deviancy has been a mortal sin against god. That I am deserving of my fate. Eternally damned. I have not found escape from my entrapment at all, at all. Now she will haunt me perpetually to death’s door.

Even after returning to Sydney, some time later, I was blind with lust for her. She became my soul’s desire in every waking and dreaming moment. I had fallen prey to her hypnotic charms. I lay entranced; my free will had tethered itself to my dreams of her. My energy drained freely. Her kisses sucked in my spirit with each breath that she took from me. I knew my soul was being stolen. Still, though, I felt I could choose.

For years I kept my shame deeply buried within the basement floor. The twisted key to the cellar door hung heavily at my throat. And thus I managed to keep her venomous touch at arms length still, with herbal sprigs and decoctions, holy water and full moon incantations. Until that fateful day I felt in my body that she had broken loose; she was no longer held at bay, and ascended emblazoned in fury.

When I came near to that point of utter exhaustion, the prelude to final extinguishment, I vacillated.

Should I willingly offer up my last essence of self to her or clutch my remains in my own hands, and thus leave the fetid comfort of her embrace?

My liver flailed and howled in impotence at her assault; her scarification, her withering. My daily doses of tinctures and glycetracts no longer warded off her poisonous cirrhosis. My succubus had once again shapeshifted and in a measured scrambling ascent from her sepulchre in the depths, metamorphosed yet again into the Incubus; into ‘that which lies above’ and must be countenanced. The virus, no longer slumbering, torrented relentlessly through my veins, caustically wreaking havoc in every organ, tissue and bones’ marrow. My jaundiced viral load now transfigured effortlessly, evading all my natural defences. Beguiled no longer, I became increasingly concerned.

Resolute at last, determined to feel and countenance my pain again, I stand and face my jilted lover. But she intercepts my utterances and I swoon beneath .her lips and the feel of her skin erotically insinuated against my own. I feel my resolve dissipating, yet cling, wondering why.

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emoir

The physicians, who previously had held out little hope for my condition, now offered me salvation in the form of a drastic new healing. But, and here was my inducement, it came with the lure of a cure.

The odds of success were fifty/fifty, the treatments highly noxious and of one full year’s duration. For half the patients the results were everlasting! Could it be that my penance may be paid in full, at last? My philandering past put behind me? Ah, to no longer be haunted by hepatic shadows of guilt and shame, but to grasp my birthright’s claim to health, to have a life lived fully.

Other furtive hepers slipped through the doors in ones and twos. All of us wore the shame of our seduction, our flirtations with our Succubi, emblazoned defiantly across our breasts, their shadows looming at our backs. And as our fears were shared; peeling away in the garnered courage of tales retold, the spectres of our demons were dispelled. It was only then that I knew I possessed the courageousness to see this through. Thus in the company of this motley crew, my guard has slipped, my shame is borne, in camaraderie and optimism my journey towards redemption has begun.

Donning my cape, one rain slicked afternoon, hat pulled low over my eyes, my silent feet padded the mortared steps of Lismore’s merchant district.

Stealthily I slid between wooden doors and overstuffed chairs into a round-tabled boardroom under phosphorescent chandeliers.

Gyps Curmi, NSW

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feature

Hep C skyrock Alarmingly high rates of hep C among certain groups of injecting drug users suggests an urgent need for better policy and resource commitments.

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research study led by Dr Lisa Maher (National Centre in HIV Epidemiology and Clinical Research and School of Public Health and Community Medicine, University of New South Wales) Objective: Evidence of ongoing hep C (HCV) transmission among injecting drug users (IDUs) suggests a need for a better understanding of seroconversion characteristics among new IDUs and other vulnerable subgroups. This study aimed to determine incidence of HCV and associated risk factors among new IDUs in Sydney.

Methods: IDUs who had injected drugs in the past six months and who were unaware of their antibody HCV status or knew their serostatus to be negative were recruited through street-based outreach, methadone clinics and needle and syringe programs in south-western Sydney. Anti-HCV negative IDUs (n=215) were enrolled and followed-up at 3-6 monthly intervals. New IDUs (n=204) were defined as aged below 30 years or injecting for <6 years at baseline.

Results: A total of 61 seroconversions were observed and incidence was 45.8 per 100

person years. Independent predictors of seroconversion were duration of injecting <1 year, female gender, culturally and linguistically diverse background (CALDB) and intravenous cocaine use. While new IDUs shared common risk factors, strong associations were observed between HCV seroconversion and sharing syringes, sharing other injecting equipment and backloading in CALDB new IDUs. Conclusion: Incidence of HCV infection among new IDUs in Sydney is unacceptably high.

Implications: Extremely high rates of incident infection among newly initiated CALDB IDUs indicate an urgent need for enhanced policy and resource commitments to reduce the vulnerability of this group to HCV and other blood-borne infections.

•

Above is an abridged version of the abstract for the article “High hepatitis C incidence in new injecting drug users: a policy failure?” The full article can be found in Australian and New Zealand Journal of Public Health 2007; 31: 30-5

215 hep C antibody negative drug users in SW Sydney were recruited to be part of this study. 204 were young and new to injecting drugs.

34 34 The TheHep HepCCReview Review Edition Edition57 57 June June2007 2007

Regular blood testing showed that after one almost half of the 204 had become hep

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kets in Sydney

Allowing the spread of HCV?

Hep C policies failing as drug users fall ill

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D

espite more than two decades of harm minimisation policies and the ready availability of free syringes, Australia’s injecting drug users have some of the highest hep C rates in the world.

Sydney has outstripped London’s alarming rates of infection, with a NSW research team warning that half of all new users contract the virus within three years and the “extremely high” numbers need the urgent attention of Australian policy makers.

“We had no idea it was going to be this high,” said professor Lisa Maher from the National Centre in HIV Epidemiology and Clinical Research. The team studied more than 200 users who were either younger than 30 or who had been injecting for fewer than three years, in Sydney’s south-west.

They found that for every 100 new users followed for a year, 46 became infected with hep C. Rates were highest among women, those under 20, people originally from South East Asia, cocaine injectors and those using for less than a year. Maher says the statistics paint a grim picture of rates in NSW. They exceed London, which recently recorded a rate of 42 per 100 new users.

“This one of the highest, if not the highest, documented rate of hep C infection in injecting-drug users in the world,” Maher said.

She says it shows prevention strategies implemented in the late 1980s don’t appear to be working. New users appear to pick up the blood-borne disease almost immediately after they start injecting, making the window to help protect them “very, very small”, she said.

•

year of injecting, p C positive.

Abridged from The Australian, 10 Mar 07

he work of Lisa Maher and colleagues is extremely important to further our understanding about how hepatitis C spreads. This work is also extremely important to understanding where hepatitis C “fits” within the political and social landscape.

We have recently seen in the media and in political circles great concern over increases in HIV infection and celebrations of 20 years of HIV prevention programs (starting with the Grim Reaper). Lisa Maher’s work shows that we have the highest rate of hepatitis C incidence recorded in the developed world.

•

Where is the political urgency around the astoundingly high numbers of new hepatitis C infections?

•

Where is the political finger-pointing and, more importantly, large dollar value funding directed towards stemming this alarming rate of hepatitis C seroconversion?

It is no news to people working in the sector that hepatitis C is not sexy, or perhaps even palatable, to policy makers and the broader society. But it is not acceptable that, on a purely economic level, we, as a society, allow the spread of hepatitis C to continue.

From a human perspective, it is not acceptable that we are allow people experiencing some of the greatest disadvantage in our societies to become less healthy, more disadvantaged and further marginalised from the mainstream.

People who inject drugs are an easy target for punitive political measures and easy for society to ignore as either bad or mad. And in the meantime, more and more people acquire hepatitis C.

Most worrying - of the new injecting drug users, injecting for less than 1 year at enrolment, 98% acquired hep C in the first year of the study.

•

Dr Carla Treloar, National Centre in HIV Social Research, UNSW.

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feature

Fatigue and illness With many medical conditions - such as liver disease - fatigue can be a major issue.

Dr Mark Swain explores why we feel tired when we’re ill?

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rain function drives the fatigue in these diseases, even though all of them occur outside of the brain, AHFMR Senior Scholar and Calgary hepatologist Dr. Mark Swain points out.

“When we become sick with the flu or a bacterial infection, we feel tired, as well as losing our appetite and so on,” explains Dr. Swain. “The body signals the brain to produce these symptoms or behaviours.

It’s important for us to conserve energy and not move around and do things—so we’ll get over the illness and get back to normal. Unfortunately, with a chronic disease, we don’t get over the illness. The stimuli to the brain keep happening. Our bodies try to adapt but they never fully do so.”

Throughout his career as a physician and researcher, Dr. Swain has attempted to improve the quality of life and health outcomes for people suffering from liver disorders. More than 100 known forms of liver disease affect everyone from infants to older adults. Liver damage can result from viruses, cancer, autoimmune disorders, alcohol, drug use, toxins, and obesity.

Liver problems Dr. Swain studies, diagnoses, and treats such liver problems as hepatitis, cirrhosis, fatty liver disease, and liver cancer. He investigates the basic mechanisms of liver inflammation and the changes in neurotransmission within the brain that occur in the context of liver disease. He is especially fascinated by the effects of liver damage on symptoms in liver disease, particularly fatigue. Dr. Swain studies how the liver might signal the brain, with the end result that the person feels tired.

Fatigue is the symptom most commonly mentioned by people with liver disease, but its cause is a puzzle. Since fatigue is an unspecific symptom (in other words, it can be caused by a variety of health problems), it is difficult to determine whether it is caused by the liver disease or by something else, or by a combination of factors. This is one reason why fatigue is difficult to study, understand, and treat.

Peripheral fatigue Many people with very severe liver disease suffer what is called peripheral fatigue as a result of muscle

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atrophy. Patients with less severe disease often experience fatigue not related to muscle deterioration: that is, fatigue that comes from changes occurring within the brain. The severity of the fatigue in these individuals does not relate to their liver function. This means that some people who have severe liver damage may not feel tired at all, while others with minimal liver damage may feel totally exhausted.

“Fatigue can be the main feature of many forms of liver disease, and can be anywhere from mild and trivial to completely incapacitating,” explains Dr. Swain. “The thing that’s most difficult is that there’s no correlation between the severity of the fatigue and the severity of the liver disease. Some people will say, ‘If I have cirrhosis, why do I feel so good?’ Others will say, ‘Why do I feel so bad?’ I think, inherently, some people are more tired than others because of the different ways individuals adapt to the signals which their bodies are sending to their brain.” Dr. Swain hopes that his research may someday allow physicians to better target the treatment of fatigue as a symptom, improving quality of life for patients with liver disease and possibly for those with other chronic diseases as well.

•

Abridged from http://www.ahfmr.ab.ca Dr. Mark Swain is an AHFMR Senior Scholar and a professor in the Department of Medicine at the University of Calgary, Canada.

Also see, Fatigue associated with chronic hep C, ED30, p16. Ed

feature

Who owns your genes?

In the late 1980s, Chiron Corporation ‘discovered’ the hep C virus and then promptly patented it. Micheal Crichton reports on the issue of biological patenting.

Y

ou, or someone you love, may die because of a gene patent that should never have been granted in the first place. Sound far-fetched?

Unfortunately, it’s only too real.

In the United States, gene patents are now used to halt research, prevent medical testing and keep vital information from you and your doctors. Gene patents slow the pace of medical advance on deadly diseases and they raise costs: a test for breast cancer that could be done for USD$1,000 now costs USD$3,000.

Why? Because the holder of the gene patent can charge whatever he wants, and does. Couldn’t somebody make a cheaper test? Sure, but the patent holder blocks any competitor’s test. He owns the gene. Nobody else can test for it. In fact, you can’t even donate their own breast cancer gene to another scientist without permission. The gene may exist in your body, but it’s now viewed as private property.

This bizarre situation has come to pass because of a mistake by an under-financed and understaffed government agency. The United States Patent Office misinterpreted previous Supreme Court rulings and some years ago began — to the surprise of everyone, including scientists decoding the genome — to issue patents on genes.

Humans share mostly the same genes. The same genes are found in other animals as well. Our genetic makeup represents the common heritage of all life on earth. You can’t patent snow, eagles or gravity, and you shouldn’t be able to patent genes, either. Yet by now one-fifth of the genes in your body are privately owned.

The results have been disastrous. Ordinarily, we imagine patents promote innovation, but that’s because most patents are granted for human inventions. Genes aren’t human inventions, they are features of the natural world. As a result these patents can be used to block innovation, and hurt patient care.

The owner of the genome for hep C is paid millions by researchers to study this disease. Not surprisingly, many other researchers choose to study something less expensive.

But forget the costs: Why should people or companies own a disease in the first place? They didn’t invent it.

Yet today, more than 20 human pathogens are privately owned, including haemophilus influenza and hep C. And we’ve already mentioned that tests for the BRCA genes for breast cancer cost $3,000. Oh, one more thing: If you undergo the test, the company that owns the patent on the gene can keep your tissue and do research on it without asking your permission.

The plain truth is that gene patents aren’t benign and never will be. When SARS was spreading across the globe, medical researchers hesitated to study it — because of patent concerns. There is no clearer indication that gene patents block innovation, inhibit research and put us all at risk.

Even your doctor can’t get relevant information. An asthma medication only works in certain patients. Yet its manufacturer has squelched efforts by others to develop genetic tests that would determine on whom it will and will not work.

Such commercial considerations interfere with a great dream. For years we’ve been promised the coming era of personalized medicine — medicine suited to our particular body makeup. Gene patents destroy that dream.

Fortunately, two US congressmen want to make the full benefit of the decoded genome available to all Americans. Last In February, Xavier Becerra, a Democrat of California, and Dave Weldon, a Republican of Florida, sponsored the Genomic Research and Accessibility Act, to ban the practice of patenting genes found in nature. Becerra has been careful to say the bill does not hamper invention, but rather promotes it. He’s right. This bill will fuel innovation, and return our common genetic heritage to us. It deserves our support.

•

Michael Crighton is a writer with the New York Times. Above article abridged from http://www.iht. com This issue arose back in the late 1980s with Chiron Corp’s discovery of the hep C virus through genetic mapping. At the time, they sought and were granted a patent over HCV’s identification.

This story was covered in The Hep C Review, ED 9, p8, Sept 1994 (available by phoning the Hep C Helpline).

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my story

With child ... with I

was four months pregnant, and I had hep C. It started to really worry me as I thought the virus could be harming this living person growing inside my body. I didn’t feel comfortable to ask anybody what would really happen to me or the baby. It was a really small community.

I finally told my local doctor. I thought he would be understanding and not judge me. I told him that I had formerly used heroin, and that I had been on methadone during my last pregnancy. The doctor asked me if I had been using any kind of drugs during this pregnancy. I told him I hadn’t used for over eight months. I also told him I had hep C, and asked what this would do to my body while I was pregnant. The doctor got angry at me for not telling him earlier that I was HCV-positive. He wrote ‘HEPATITIS C’ in big red letters on the front of my file, then said not to worry and that everything would be fine. He said that when the baby was born it would be tested to see if it had contracted the virus.

In the last six weeks of the pregnancy I had some health problems. I went to the hospital and a nurse took me to an examination room. My doctor asked me what was wrong. I told him but he didn’t seem to be listening to me. He was worried about how I looked, and he asked if I had used any heroin. I told him I hadn’t. He gave me a lecture about having a baby born with a habit in a hospital not equipped to look after a withdrawing baby. I tried to get through to him yet again that I hadn’t used, that I was there because of a bad cough that I’d been having for about six weeks.

Finally he started to check me over, listening to parts of my body and checking the baby. He said I had a chest infection and that he was admitting me to hospital until I gave birth to the baby. I would be on Ventolin. He also agreed to do some more tests.

That night, after the first lot of Ventolin, I felt so much better I got a good few hours sleep. In the early hours of the morning a nurse sat with me and we talked. She was there to watch over me as they all thought I was in withdrawal.

The next morning I was given blood tests and a urine analysis test. I was told that I needed to do them because of the infection and the hep C, so I was willing to do the tests. It was 10pm on New Year’s Eve. My family had been visiting, and they left. As they were leaving I was getting some cramps in my stomach and lower back. I had my Ventolin but didn’t

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finish it all as the pain was too intense. I got hold of a midwife. All she did was give me two Panadol. This got me really upset as something didn’t feel right and I was in pain and two Panadol were useless.

I was upset and sick of everyone at the hospital thinking I just wanted to get off my face. I decided to leave. I got as far as the driveway when a nurse spotted me and asked where I was off to. The shift had just changed for the night and the nurse walked me back to my room.

My doctor was on duty that night and he arrived in less than five minutes, asking what the problem was.

I explained that I was in pain and I wasn’t quite sure what was happening. The doctor yelled at me, telling me there were people who really needed him in Emergency, and that he wasn’t there just for me. I got upset and started to cry. He said, “What do you want?

What pills do you need?”

I was speechless. He continued by saying, “Did your partner have some heroin and you missed out? Is that why you need something now?” I let loose. I yelled through the tears that this had nothing to do with heroin or any other drugs. I yelled, “I am in pain, I am scared and I don’t know what’s happening”.

The doctor yelled back at me to wake up to myself.

“You’ve already given birth twice before, and if you don’t snap out of it now, then how will you be when you really do go into labour and give birth?’’ He said that he had some other patient to see and would be back in 10 minutes.

I sat down on the easy chair in the room and started crying. When the doctor entered my room again he pulled a chair up to face me. He looked me in the eye and asked if I had made my mind up, did I need him to help me with anything. I started to tell him I didn’t know what was going on. He cut me off and said, “Okay, we’ll do an internal examination—that way I’ll know exactly what’s going on.”

I said to him that it was no use, and with the way I said it and the look on my face the doctor knew something was up. He pulled my sarong open and there was the baby’s head showing. The doctor started yelling for help, but no-one showed up. I was sitting there with my legs open seeing exactly what was going on. The thing was, my waters hadn’t broken and the doctor knew that the baby was coming with or without them

my story

hep C Being so. He told me that he had to break the waters with his nails. He did this and a few seconds later the baby came out: a beautiful baby girl.

The doctor was yelling and I started to as well, and then the entrance of my room started filling up fast with midwives and nurses. The doctor yelled for scissors to cut the cord. A midwife said she had some scissors but they weren’t sterilised. The doctor snapped at her that nothing was sterile and to just give him the scissors. He cut the cord, and then told me to jump up on my bed to have the afterbirth. I couldn’t believe what had just happened. I had the afterbirth on my bed and the doctor left.

Later we talked, and he told me that they were doing tests on the placenta to see if the baby had hep C. Then he said that he had done the delivery without any gloves on. He said he had cuts on his hands, and therefore he could have contracted hep C. The way he talked about it was very accusatory—he was acting as though it was my fault!

I wanted to get in contact with my partner and tell him about the birth. The nurses allowed me to ring him from the nurses’ station. My file happened to be sitting on the desk, and of course after seeing my name on the file and papers, I read what was in it. I couldn’t believe my eyes. All the tests that the doctor had ordered to be done were tests for drugs: every drug you could think of. Of course they all came back negative, but what really upset me was that there wasn’t one test done on my hep C. The doctor had not asked permission, let alone admitted to doing them.

He told me he did it because he thought I was using and he had to think of the baby. It didn’t make me feel any better.

The next day my room was still dirty with blood.

The nurse on duty had changed the sheets on the bed but left the dirty ones in the bathroom so the cleaners could take them. The bathroom had blood in the shower and on the floor from when I gave birth. There were towels in there covered with blood and afterbirth, which I had to clean up myself from the floor in my room. Even the chairs had blood and whatever else on them. The cleaners didn’t want to clean my room because they knew I had hep C, and with all the blood they weren’t going near my room.

Apparently it was OK for all the visitors who came to see me to be near it, though.

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my story After two days of having bloody towels and sheets in my bathroom and the bloody chair in the corner of the room, it was cleaned. I heard the cleaners outside the room say, “It’s the patient with hep C, and there is hep C all over the room!”

A few days before I left the hospital the doctor told me that the baby’s hep C test results had come back positive. I was so upset I started crying. I couldn’t believe my beautiful baby had hep C, and all because of me. My partner asked the doctor how they knew this. The doctor told him this was the second child he had to test in the last month for hep C. He told us we should tell the day carers and schools and doctors who would be caring for her that she had hep C, as they all need to know. I told him I didn’t have to tell anyone.

Later I saw an alcohol and drug worker and told her about my daughter having hep C. She told me that of course a child tests positive for hep C antibodies because the child has the mother’s blood. A child can have the antibodies in their blood for up to two years, but not necessarily have the virus. I told the counsellor the doctor’s name and address and she wrote him a letter including some pamphlets explaining hep C. The doctor wasn’t impressed and didn’t take the letter well.

He was angry the counsellor got involved. He said that if I had a problem then I should have contacted him.

feature

Viral Confections

C

aitlin Berrigan is an interdisciplinary artist in tactile and edible sculpture, immersive installation, electronic media and interactive performance. Invoking the history of science and pop culture, her works address the ruptures & confluences of the body’s medicalisation, and many variations as object of desire. The results are quietly disturbing works of subtle humour & irony that speak to our violent and conflicted relationship to the body.

Her recent work in designer chocolates illustrate the inventive protein structure of the hep C virus. A plaster model of the virus was printed as a rapid prototype from a 3D illustration of the virus, from which the chocolates were cast.

I was then admitted to hospital on Australia Day with a pelvic infection. The staff could not believe the baby had been delivered in such an unsterile manner, and that I had never even been prescribed an antibiotic.

I just hope other people with hep C will be given the correct information. I wouldn’t want another mother to feel the way I did about infecting their baby when the child isn’t really infected.

Cheryl, SA Abridged from Hepatitis C Community News, No 35, March 2007. Hepatitis C Council of SA. It saddens us to hear of Cheryl’s story as quality of health care has been an issue for so long.

Following is a quote taken from C Change - report of the enquiry into hepatitis C related discrimination. Anti-Discrimination Board of NSW, Nov 2001.

“Evidence demonstrates that discrimination within the health care system is prevalent, particularly in hospitals, general practice and dental surgeries.

Such discrimination has a negative effect on the relationship between people with hepatitis C and health care professionals, and can become a serious deterrent for people seeking health care.”

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Viral Confections is part of a series, Sentimental Objects in Attempts to Befriend a Virus. Living with a chronic, virtually incurable virus can lead to a certain identity crisis in which one’s occupied body is seen simultaneously as enemy and victim; friend and abuser.

“Weary of the rhetoric of war and fighting used to describe the illness, I wanted to domesticate my untamed virus by offering it comfort, bread and circus.

Instead of starvation, I offer it delicacies,” Berrigan said.

Many thanks to Richard Kuhn in the Department of Biological Sciences at Purdue University, Alex Gibbons and the New York University Arts Technology Group for providing the rapid prototype.

•

Abridged from www.membrana.us/ viralconfections.html

feature

‘I am currently seven months into 12 months of treatment for my hep C, genotype 1a, and the side effects are really starting to get me down. Luckily I have some flexibility and work part-time but have very little support from family or friends. What can you suggest?’

Well, congratulations on getting this far! Treatment for hep C can certainly be a trying journey, with many ups and downs along the way. The 12 month course of treatment can present a whole new set of challenges, where the chances of clearing the virus are not quite as good and the treatment duration is longer (Genotypes 2 & 3 require 24 weeks of treatment and have approx 80% chance of a cure, whereas genotype 1 requires 48 weeks of treatment and has approx 50% chance of a cure).

Still, many people choose to give it a go and most people (around 90%) finish the treatment. The ultimate outcome of clearing the virus for good can be a great motivator.

The side effects of treatment can be many and varied ranging from skin conditions to irritability and depression, but most people find their own personal ways of coping with the different side effects. Staff at the treatment clinic or your specialist can be a great source of information and often have useful suggestions for people, so it’s worth having a chat with them about how you are feeling.

Looking at the list of side effects can be quite scary, however most people will not get them ALL and they tend to come and go throughout the 12 months.

You are lucky to have some flexibility in your work situation, and in some ways working part time can be a good motivator and provide some purpose on those days when you are not feeling so well.

There are some really useful written resources that make practical suggestions on ways of coping with treatment and the side effects, to request copies just call the Hep C Helpline on 1800 803 990.

If you have very little support from friends or family it is worth checking if the treatment clinic you attend runs a support group, as this can be a great way of connecting with other people who are going through the same process and getting tips and ideas from them about what they are doing to cope with the side effects.

If you have internet access there is also an online forum that many people find helpful. A lot of the members are currently undergoing or have been through treatment, and can understand where you are coming from. The web address is www. hepcaustralasia.org Another suggestion would be to speak to one of our Hep Connect volunteers. These are all people who have experiences of living with hep C and have been through treatment. They are available to speak with people over the phone about their personal experiences and can provide a really useful support system, and level of understanding, that only comes from having been through the process themselves.

Just call 1800 803 990 to speak to a Hep Connect volunteer.

You will have your good days and your bad days, but it is important to keep talking and stay in touch with people who can support you. You’ve made it over half way now and are on the downward stretch from here!

Remember to try and take each day as it comes, look after yourself and most importantly talk to people who really understand what you are going through.

•

Hep C Helpline

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

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

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promotions Call for genetic study volunteers

Looking for proofreaders To keep our The Hep C Review looking as professional as possible, we are looking for additional volunteer proofreaders to join the team and be listed on page three!

You don’t need to be an experienced proofreader but you need • good attention for detail • a good awareness of conversational grammar • internet access • capacity to commit 4-5 hours, four times a year.

We would email out a PDF four times a year, giving you 10-12 days to get back with comments. For more info, contact Paul on 9332 1853, or paulh@hepatitisc.org.au

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

You should ..

• previously or currently have genotype 1 chronic hep C infection • previously have completed combination therapy with interferon and ribavirin therapy, IRRESPECTIVE of treatment outcome There is only one visit which takes less than 30 minutes and involves the collection of a sample of blood.

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

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

HEP CONNECT Talk treatment Talk hep C Hep Connect offers you support & discussion with volunteers who are affected by hep C and have been through treatment.

This is a free & confidential phone based service which anyone in NSW can access.

To speak with a volunteer please phone 9332 1599 (Sydney) or 1800 803 990 (Freecall regional NSW)

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halc

legal centre is now able to offer free help with hep C legal issues HALC is an accredited community legal centre that provides advocacy and advice to people with HIV/AIDS and hep C related legal issues. Our solicitors understand the unique legal needs of people living with Hep C. We provide a quality service that involves people in the recognition, understanding and solution of their legal problems.

Hep C can affect many different aspects of a person’s life and we frequently provide assistance in the following areas: •

Immigration

•

Discrimination and vilification

•

Superannuation, insurance and employment

•

Privacy and Health Care Complaints

•

Enduring Power of Attorneys and Enduring Guardianships.

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

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

http://hepcaustralasia.org

WEBSITE The Hepatitis C Council of NSW website contains a wide range of hep C related information.

Our quarterly magazine, The Hep C Review, is fully accessible with over 10 years worth of editions downloadable as PDFs. In addition to detailed downloadable factsheets, the site features search functions and an email “Your Questions Answered” facility.

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

www.hepatitisc.org.au

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research update Children with HCV rarely symptomatic initially USA - Children with hepatitis C virus (HCV) infection, mostly acquired through blood transfusions, are generally asymptomatic, according to a study of such patients treated at a Washington, DC hospital.

In the February issue of the Journal of Paediatrics, Dr Parvathi Mohan of Children’s National Medical Centre and colleagues note that there is a lack of uniformity in the descriptions of the natural history, clinical presentation, and histologic features of HCV infection in children.

This prompted them to evaluate a cohort of 60 HCVinfected children followed at the medical centre over a 5-year period. Sources of infection were transfusions (68%), perinatal transmission (13%), both (7%), and unknown (12%). The mean age at infection was 7.1 months, and the duration of infection was 13.4 years.

Mean alanine aminotransferase level was normal in 25% of the children, up to three times normal in 62%, and greater than three times normal in 13%. In addition, liver biopsy specimens showed minimal to mild inflammation in 71%, absent or minimal fibrosis in 88%, and bridging fibrosis in 12%.

Most patients were asymptomatic, but three patients had advanced liver disease at presentation. Two died after transplantation.

Summing up, Dr Mohan told Reuters Health that further research is required, but “most children who acquire HCV infection early in life manifest only mild liver disease over the first two decades of their infection.”

“However,” she concluded, “it is apparent that severe liver disease may develop in some -- and all children with HCV should be followed closely.”

Clinical Spectrum and Histopathologic Features of Chronic Hepatitis C Infection in Children, Mohan P, et al. J Pediatr 2007;150:168-174 •

Abridged from www.hcvadvocate.org

Heavy-drinking women with HCV cut decade off life USA - Heavy-drinking HCV-infected women died more than a decade earlier than HCV-infected women who drank only moderately or not at all, reported Chiung Chen and colleagues, in the February issue of Alcoholism: Clinical and Experimental Research.

The findings suggest that alcohol affects men and women with HCV differently, and provides further evidence that heavy drinking contributes to HCV-related disease progression and death, the investigators said.

“Previous studies indicated that alcohol use is a risk factor for HCV disease progression, but they seldom examined the effect on women and men separately,” said Chen.

He and his colleagues looked at 7,263,163 death records from 2000 to 2002, from a US National Centre for Health Statistics data set. They used codes to identify people who were infected with HCV and who were heavy alcohol users. Alcohol use was determined by alcohol-induced medical conditions as either the underlying cause or as one of the contributing causes of death.

They found that among those with HCV listed as the underlying or contributing cause of death, there was an excess of heavy alcohol use compared with those who died from non-HCV causes.

In addition, people who died from HCV-related causes and who were heavy alcohol users tended to die sooner than HCV-infected people with temperate drinking habits.

Among men with HCV, the mean age at death for heavy alcohol users was 50, compared with 55.1 for non-heavy users. For women with HCV, heavy alcohol users died at an average age of 49.1 years, compared with 61 years for those who were abstemious or did not drink to excess.

The study has the advantages of being massive and of relatively simple design, and applies epidemiological tools not much previously used on this question of HCV, heavy alcohol use and gender relationships.

Chen CM et al. “Alcohol and hepatitis C mortality among males and females in the United States: a life table analysis.” Alcohol Clin Exp Res 31(2), 2007.

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

research update Women, hep C, fibrosis, menopause, steatosis and hormone replacement therapy FRANCE - The rates of fibrosis progression in chronic hep C are significantly different between males and females. The anti-fibrogenic effect of oestrogen has been proposed, possibly via inhibition of stellate cells. The aim of this study was to evaluate the severity of chronic hep C in women, in relation to the menopause, steatosis and hormone replacement therapy (HRT).

From November 2003 to October 2004, women with chronic hep C were enrolled prospectively. A questionnaire was completed prospectively and a blood sample was obtained on the day of biopsy. We identified characteristics associated with moderate/ severe fibrosis using univariate and multivariate analysis.

251 women were included in the study. 122 women (52%) were menopausal and 65 were receiving HRT. 61 (24%) women with moderate/severe fibrosis had a longer known duration of infection (>15 years), a higher body mass index and presented with steatosis more frequently than 190 (76%) women with mild fibrosis (F0-F1). Women with F2-F4 were more often menopausal (67% v 47%). The probability of fibrosis F2-F4 was lower for menopausal women receiving HRT. Steatosis was more frequent and more severe in menopausal women.

Severity of fibrosis was associated with a longer duration of infection (>15 years), a higher body mass index, advanced steatosis and the menopause.

Menopausal women receiving HRT presented with a lower stage fibrosis. These results reinforce the hypothesis of a protective role of oestrogens in the progression of fibrosis. Steatosis may be implicated in the progression of fibrosis after the menopause.

Codes, L. et al, (Mar 2007), Gut, Vol 56, Issue 3, 390395.

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Abridged from www.hcvadvocate.org

Shorter treatment effective for HCV geno 2 USA - For people with chronic hep C virus genotype 2 who achieve a rapid virologic response at four weeks, 16 and 24 weeks of treatment with peginterferon and ribavirin are equally efficacious, according to researchers.

“The recommended treatment for patients with hep C virus genotype 2 (HCV2) is pegylated interferon and ribavirin for 24 weeks,” Dr Wan-Long Chuang, of Kaohsiung Medical University Hospital, Taiwan, and colleagues write in the April issue of the journal Gut. In the present study, the researchers examined whether a 16-week treatment with peginterferon and ribavirin is as effective as a standard 24-week treatment.

People with HCV2 were randomly assigned in a 1:2 ratio to 16 weeks (n = 50) or 24 weeks (n =100) of treatment with peginterferon alpha-2a and ribavirin.

They were followed for 24 weeks after the end of the treatment.

The initial response rate was 86% in the 16-week group and 87% in the 24-week group. The rate of sustained response was 94% in the 16-week group and 95% in the 24-week group. Patients in the 16week group had a higher relapse rate than those in the 24-week group (6% versus 3.1%, respectively), but the difference did not reach significance.

Early response, patient age, but not treatment duration, were independent factors associated with sustained viral response, Dr Chuang reported.

Both treatment arms were well tolerated. There were no serious adverse events reported. Both groups had similar rates of adverse events with the exception of alopecia, which was significantly higher in the 24week group.

A randomised study of peginterferon and ribavirin for 16 versus 24 weeks in patients with genotype 2 chronic hepatitis C. Yu, M.L. et al, Gut 2007;56:553559.

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Abridged from www.medscape.com

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research update Psychiatric history does not predict treatment completion USA - Psychiatric illness does not predict interferon treatment completion rates in hep C seropositive veterans, reports March’s Journal of Clinical Gastroenterology Clinical experience suggests that pre-existing psychiatric conditions may adversely affect the ability to tolerate combination antiviral therapy in hep C. Dr Adrian Dollarhide and colleagues from California evaluated the impact of common psychiatric disorders on completion of antiviral therapy in HCV positive US veterans. The team performed a retrospective chart review of 130 veterans treated with combination antiviral therapy from 2000 to 2004.

The research team examined baseline psychiatric, substance use, demographic, and comorbid medical disease variables for all patients started on treatment.

The researchers found that 13% of patients required treatment discontinuation for neuropsychiatric adverse effects.

There was no association between treatment completion, and any specific psychiatric diagnosis, or combined psychiatric and substance use diagnoses.

The team also noted that there was no association between treatment completion, baseline use of antidepressants, and history of substance abuse/ dependence.

However, higher body weight did predict likelihood of treatment completion. The researchers observed this association especially for those weighing 100 kg or more compared with subjects weighing less than that.

Dr Dollarhide‘s team commented, “In this cohort of veterans, prior psychiatric or substance use history did not predict completion of recommended interferon with ribavirin treatment.”

“These findings suggest that a larger pool of veterans with psychiatric or substance use disorders may be considered candidates for antiviral therapy when provided with multidisciplinary support.”

Psychiatric Comorbidity Does Not Predict Interferon Treatment Completion Rates in Hepatitis C Seropositive Veterans. Dollarhide A, et al. Journal of Clinical Gastroenterology. 41(3):322-328 •

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Hep C treatment in a drug dependency setting AUSTRALIA - In order to examine rates and predictors of referral for hep C virus (HCV) treatment and preliminary treatment outcomes in injecting drug users (IDUs) receiving opioid replacement treatment, a prospective clinical audit was undertaken in an inner city Sydney drug dependency treatment practice between December 2002 and November 2005.

The majority of IDUs (178/237; 75%) were HCV antibody positive, of whom 170 were HCV treatment naïve with no absolute treatment contra-indications.

Among these 170 patients, 121 (71%) had chronic HCV. Based on risk factors for HCV disease progression, 63 of 121 (52%) chronic HCV patients were targeted for referral; these patients were older, had higher alanine aminotransferase levels and longer estimated duration of HCV infection. Of these 63 patients, 43 were referred to a hepatitis treatment clinic, and 27 attended during the audit period.

Patients who attended for treatment assessment were more likely to have genotype 2 or 3, but sociobehavioural factors were similar. Liver biopsy was performed in 20 patients, with moderate or greater fibrosis in 18 patients.

Of 14 patients commenced on pegylated interferonalpha and ribavirin therapy, one ceased treatment due to non-response, 10 have completed treatment, all with an end-of-treatment (n = 4) or sustained virological response (n = 6), and treatment is ongoing in three.

The development of HCV treatment referral criteria has allowed prioritisation of patients for referral, potentially halving those that require early assessment.

Preliminary HCV treatment outcomes are encouraging and highlight the potential for reducing liver disease burden in this patient population.

Referral for chronic hep C treatment from a drug dependency treatment setting. Richard Hallinan, et al.

Drug and Alcohol Dependence. Volume 88, Issue 1, 17 April 2007, Pages 49-53.

Abridged from ADCA Update

research update Lactulose improves quality Nexavar extends survival of life for people with in people with advanced cirrhosis liver cancer INDIA - A study of patients with cirrhosis who had minimal hepatic encephalopathy (MHE) found that cognitive function and health related quality-of-life improved when they took lactulose.

The results of this study appear in the March 2007 issue of Hepatology, the official journal of the American Association for the Study of Liver Diseases (AASLD).

Led by Dr Radha Dhiman, of the Department of Hepatology, Postgraduate Institute of Medical Education and Research in Chandigarh, India, researchers conducted a study involving 61 patients who had MHE. The patients were diagnosed with MHE if they had abnormal scores on two or more neuropsychological tests that were used to assess their mental state. The patients were also given a Sickness Impact Profile (SIP) questionnaire to determine the impact of the disease on daily activities such as sleep/rest, eating, work, home management, mobility, social interaction and emotional behaviour and communication.

They were then divided into two groups: 31 patients received lactulose treatment for 3 months, while 30 patients received no treatment.

The results showed that the number of abnormal neuropsychological tests decreased among patients who took lactulose compared to those who did not. Changes in these tests indicating significant improvement in cognitive function were also seen in the lactulose group. In addition, the lactulose group also showed improvement in their quality of life as measured by SIP scores, with significant improvement in emotional behaviour, movement, mobility, sleep/ rest, and recreational activities.

In an accompanying editorial in the same issue, Asif Qadri and colleagues from MetroHealth Medical Centre affiliated with Case Western Reserve University in Cleveland, OH, state that the current study “may potentially change the overall management of hepatic encephalopathy (HE),” adding that the results strongly suggest that MHE is the cause of reduced quality-oflife in patients with cirrhosis.

Lactulose improves cognitive functions and healthrelated quality of life in patients with cirrhosis who have minimal hepatic encephalopathy. Dhiman R et al. Hepatology 2007;45(3): 549-559 •

SPAIN / USA - Bayer Pharmaceuticals and Onyx Pharmaceuticals announced that an independent data monitoring committee (DMC) has reviewed the safety and efficacy data from the companies’ pivotal Phase 3 trial in patients with advanced hepatocellular carcinoma (HCC), or primary liver cancer.

Based on this planned interim analysis, the DMC has concluded that the trial met its primary endpoint resulting in superior overall survival (OS) in those patients receiving Nexavar tablets versus those patients receiving placebo. The DMC also noted that there was no demonstrated difference in serious adverse event rates between the two treatment arms (Nexavar and placebo). Based on these conclusions, the DMC recommended that the trial be stopped early.

As a result of this recommendation, Bayer and Onyx will stop the trial and allow all patients enrolled in this trial access to Nexavar.

Given that there are limited approved systemic therapies for this disease, the companies will continue discussions with health authorities worldwide, including the US Food and Drug Administration (FDA) and European health authorities regarding the next steps in filing for approval for the treatment of HCC. The two companies plan to submit the results from the trial to the American Society of Clinical Oncology (ASCO), for presentation at its annual meeting in June 2007.

“The observed superiority in overall survival for Nexavar-treated patients over patients receiving placebo demonstrates the efficacy of Nexavar in advanced primary liver cancer,” said Dr Jordi Bruix, co-principal investigator and Head of the Barcelona Clinic Liver Cancer Group, Liver Unit, Hospital Clinic Barcelona, Spain.

Dr Josep Llovet, co-principal investigator and Associate Professor of Medicine/Director, HCC Research Program, Division of Liver Diseases, Mount Sinai School of Medicine, New York, and Professor of Research at Barcelona Clinic Liver Cancer Group, Liver Unit, Hospital Clinic Barcelona added, “These results point to new potential treatment options for those patients suffering from this devastating disease.”

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Abridged from www.eurekalert.org

Abridged from http://www.docguide.com

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research update Drug users have other health problems

Genomic test to predict fibrosis risk

AUSTRALIA - The National Drug and Alcohol Research Centre at the University of NSW has reviewed the autopsy reports of 841 people who died of opioid toxicity.

USA - Specialty Laboratories announced the launch of HCV Liver Fibrosis GenotypR, the first genomic clinical test to predict progression to liver fibrosis or cirrhosis for people with hep C.

This review aimed to determine their characteristics and whether they had any medical conditions as some chronic diseases may contribute to deaths from overdose.

The test identifies a person’s genomic signature of seven single nucleotide polymorphisms to provide a Cirrhosis Risk Score (CRS) which rates the relative risk of progression to liver fibrosis or cirrhosis. To assist physicians and patients in determining for whom early therapy is most warranted, the CRS places the patient into one of four risk groups.

The average age of the deceased was 33 years. Most of the deaths were in men.

In 40% of cases the victim had drunk alcohol in addition to taking opioids. Benzodiazepines were present in more than 28%, and 10% had taken antidepressants.

Nearly 6% of the cases had ventricular hypertrophy and 13% had evidence of bronchopneumonia.

Approximately 17% of those older than 44 years had pulmonary fibrosis.

Many of the bodies showed signs of hepatic disease.

One in four of those older than 44 had cirrhosis of the liver.

There can be a tendency to focus on the drug-seeking behaviour of people with opioid dependence. This study shows that their other health problems should not be overlooked as they may have multi-organ disease.

It is surprising that severe coronary arteriosclerosis was already present in a relatively young group.

People who are opioid dependent may have multiorgan disease and smoking is likely to be a factor.

In view of the incidence of liver disease, it is important to check hepatic function and for the presence of hep C. The presence of liver disease could explain why some deaths occurred at relatively low opioid concentrations. This risk could be exacerbated by alcohol.

Systemic disease among cases of fatal opioid toxicity.

Darke S, Kaye S, Duflou J. Addiction 2006;101:12991305.

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Abridged from Medical Observer, 9 March 2007

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Hepatitis C virus (HCV) is a major cause of chronic liver disease with approximately 4 million people infected in the United States with 35,000 new infections identified annually. Liver biopsy is the primary method of establishing which patients to treat, based upon the amount of bridging fibrosis present at the time of the biopsy. Complications of chronic hep C, which are cirrhosis and the indication for liver transplantation, are expected to result in large increases in medical care costs in coming decades as people with chronic hep C experience the long-term effects.

This article was prepared by Genomics & Genetics Weekly editors from staff and other reports.

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Abridged from Genomics & Genetics Weekly, 3 Nov 2006, via www.therapeuticsdaily.com via www.hcvadvocate.org

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interferon-based therapy Peg Interferon alpha & Ribavirin Subsidised ‘peg combo’ treatment for people with chronic hep C is available to those who satisfy all of the following criteria: 1 Blood tests: people must have documented chronic hep C infection (repeatedly antiHCV positive and HCV RNA positive).

2 Contraception: women of child-bearing age undergoing treatment must not already be pregnant nor breast-feeding, and both a woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each person). Female partners of men undergoing treatment must not already be pregnant.

3 Age: people must be 18 years or older.

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

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

Monitoring points People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable or the viral load has decreased by at least a 2 log drop. The baseline and 12-week tests must be performed at the same laboratory using the same type of test kit. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of their higher likelihood of early viral response.

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

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

Liver biopsy no longer a general requirement for treatment From 1 April 06, a biopsy examination is no longer a mandatory pretreatment test for people wanting to access government subsidised S100 hep C pharmaceutical treatment.

Note that some people with genotype 2 or 3 may still require biopsy to determine whether they have cirrhosis or bridging fibrosis - which would have an impact on treatment monitoring. See ‘Monitoring Points’, lower left.

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

Alternative access

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 6 months after cessation of treatment.

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

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.

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

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

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

a nurse educator/counsellor for patients

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24 hour access to medical advice for patients

•

an established liver clinic

•

facilities for safe liver biopsy.

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

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

•

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

Some people choose complementary therapies as a first or a last resort. Others may not use them at all. Some may use them in conjunction with pharmaceutical drug treatments. Whichever way you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to: •

Has the practitioner considered all relevant diagnostic testing?

•

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

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Is the treatment dangerous if you get the prescription wrong?

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How has their complementary therapy helped people with hep C?

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What are the side-effects?

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

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

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How have they measured the health outcomes of their therapy?

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How do they aim to help you?

Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner.

You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask your natural therapist about money before you visit them.

Many will come to arrangements about payment; perhaps a discounted fee?

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

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

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

If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and well experienced in working with people who have hep C. Additionally, they should be members of a relevant professional association.

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

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support / info services NSW Hep C Helpline

Family Drug Support

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

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

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

Prisons Hep C Helpline A special phone service provided through the NSW Hep C Helpline that can be accessed by NSW inmates and prison staff. Call this free and confidential service by using the jail phone, or by calling the numbers above.

Advice on food & nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, call the Dietitians Association of Australia: 02 6282 9555 or 1300 658 196 or www.daa.asn.au General Practitioners

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

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

The Hep C Review

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

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

Some Neighbourhood Centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Neighbourhood Centres can be found by phoning your local town Council.

Other support & counselling

It is important that people find a well-informed GP who can support their long-term health care needs.

A doctor should be able to review and monitor a person’s health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system.

The NSW Hep C Helpline may be able to refer people to doctors and other health care workers in their area who have been involved in hep C training.

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Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. They offer short and long-term counselling, information, support and advocacy to affected people and their families and/or carers. Traids services are free and confidential, and on either a face-to-face or telephone basis. They also run support groups and have a regular newsletter. Current hep C information is available. For more information, phone 02 9843 3143 (Traids have a call-back policy for NSW regional callers).

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

support / info services Legal advice

Northern Rivers Liver Clinic Support Group

The HIV/AIDS Legal Centre (HALC) also assists people with hep C related legal issues. They offer advocacy and advice on a number of problem types including immigration; discrimination and vilification; superannuation and insurance; employment; privacy and health care complaints; and the appointment of attorneys and guardians. For more information, phone 9206 2060 or 1800 063 060 or visit www.halc.org.au

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

Hep Connect Peer Support Program Offers support and discussion with volunteers who are affected by hep C and have been through treatment.

This is a free and confidential phone based service which anyone in NSW can access. To speak with a volunteer please phone 9332 1599 or 1800 803 990 (Freecall from regional NSW).

Hep C Australasia This Australasia-wide online internet community has over two hundred members. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org Radio HepChat Hep Chat, the weekly radio program of the Hepatitis C Council of Victoria, can be heard across Australia on your computer at home or work, and on your mobile.

Hep Chat started in April 2001 and remains the only regular radio program that focuses on hep C and the health, welfare and drug issues that surround it in Australia. The program streams live every Thursday morning between 10.30 and 11am, (AustralianStandard-Time). To listen, go to 3CR Radio’s website at www.3cr.org.au and follow the prompts.

Online hep C support forum An online forum aimed at combining and sharing hep C information. Visit http://hepcaustralia.com.au Hunter Hepatitis C Support Services A service that is open to all people of the Hunter living with HCV and is linked to a team of health care professionals specialising in hep C treatment & care.

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

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

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

Parramatta Support Group A support group for people living with hep C, including those on treatment. People from any area are welcome. From 7pm to 8.30pm, the 1st Thursday of each month (except Dec & Jan) at Parramatta Health Services, Jeffery House, 158 Marsden St, Parramatta.

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

Westmead Hep 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 hep C such as: research about the virus, transmission, treatment and symptom relief. People who have hep C or who have successfully undergone treatment often speak of their experiences and we also allow time for questions and answers. Supper is generally provided as we know this can be an awkward time for some people. Parking is available at the hospital but you will need five dollars in coins. Alternatively, it is about a ten-minute walk from Westmead station. Go to the main entrance of the hospital and ask for directions at Reception, or look for our signs. There is no charge for the Information Night and people from any area are most welcome. For information, please contact Bruce or Maria on 9843 3143 or Susan on 9840 4110.

Nepean Hepatitis C Support Group Guest speakers keeping you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For further information, please contact Jo 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/DVDs The Big Combo (HCCNSW, 2002): Approx 20 mins; two people consider pharmaceutical treatment for hep C in very different ways; information on current treatment and interviews with treatment specialists.

Available with subtitles for people with hearing difficulties. English.

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

The most precious gift Until recently, people living with hep 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 hep C do consider the act of organ donation.

Transplanting a hep C infected liver into someone who already has the condition makes good sense - if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and non-HCV livers are unavailable 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.

For more information, telephone 02 9229 4003.

•

HCCNSW

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

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

Conference update National Hepatitis C Health Promotion Conference Melbourne, 5-6 June 2007 15th National symposium on heps B & C St Vincents Hospital, Melbourne, Nov 2007

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 for more information.. www.hepatitisc.org.au or telephone the office (see page 3 for contact details)

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

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

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

Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300

Postal address

Or fax: 02 9332 1730

Suburb/town

About the Council

State

Postcode

Home phone

Email:

We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hep C throughout NSW. The Council is overseen by a voluntary Management Committee, primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.

Privacy policy

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

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

Suburb/town

Membership

Free copies of The Hep C Review required

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

C. For agencies, organisations and companies

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

If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post.

We will provide posted regular HCV update information.

Please note that we encourage services on our referral database to become members of the Council.

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

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

State

Postcode

Work phone

Work fax

Mobile

Email:

May we list you on our referral database?

1

2 5 10 20 50 80 160

Name of agency Contact person Position Postal address

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

May we list you on our referral database?

Free copies of The Hep C Review required

The Hep C Review

Edition 57

1 2 5 10 20 50 80 160

June 2007

55

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.

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

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

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

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

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

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

I'm not sure - please check your database

Card number:

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

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

Card type

Waged: for people in paid employment

$25

Cardholder signature:

Concession: for people on government benefits

$10

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

$0

Individual health or allied professionals

$40

7. Payment, GST and postage instructions

Community-based agency (Management Committee run)

$50

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

Public/private sector agency

$70

month:

Bankcard

year:

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

Hepatitis C Council of NSW - Membership

4. Contact with the Council office.

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

Please do not contact me regarding volunteer work for the Council

Expiry date:

Visa

Please print cardholder name:

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

I'd like to assist. Please contact me regarding volunteer work

MasterCard

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

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

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

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

Signed:

Dated:

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

This section office use only

date received

amount received

staff initials

56

The Hep C Review

Edition 57

June 2007

receipt number

date entered

membership number

info pack sent?