Hep Review 48

Inside this edition..

Looking after your best interests (the role of the HCV Clinical Nurse Consultant) Hepatitis C, pregnancy and child raising New guidelines for the funeral industry Opinion - Prison’s second sentence

The Hep C Review

Edition 48

March 2005

1

editor’s intro

H

ere at the Council we wish a warm 2005 welcome to all our readers. We hope you have weathered the Christmas season festivities and are sticking to any resolutions you may have made.

In this edition of The Hep C Review we present our usual mix of letters, news, opinion, information articles, personal stories and research updates.

To help place Australia’s hep C epidemic in an international context we continue to obtain as many news items from overseas as possible. In addition to the local news we hope these articles help to keep you up-to-date on developments in knowledge and treatment of HCV. One news item in this issue concerns the Hepatitis C Choices website. If you have internet access, consider visiting this site. It is a truly valuable source of hepatitis C information... http://www.hepcchallenge.org/ Speaking of hepatitis C information, we must pay tribute to our friends at the US-based Hepatitis C Support Project.

You will note in this edition our continued reliance on their excellent website as a source for information... http://www.hcvadvocate.org/ HCV Advocate writer Lucinda Porter has contributed an article to this issue titled, Herbs and Hepatitis C (pg 24).

Although written for an American readership, we hope this piece provides insight into the use of complementary therapies for dealing with hepatitis C.

Complementary therapies were shown to be the most popular topic in our most recent readership survey. If you would like to comment on our coverage of complementary therapies, please don’t hesitate to write in.

We’d be very keen to hear about what you’d like to see covered.

Other interesting features in this edition include the article

by Prof Bob Batey and Tracey Jones titled, Hepatitis C, Pregnancy and Child Rearing (pg 12). Reading it I am reminded of some of the issues I encountered as the HCV positive father of a young daughter (she was aged three when I received my diagnosis).

Our article on the funeral industry (pg 14) marks a high point in an ongoing campaign to address unacceptable practices in that industry. It details welcome amendments to guidelines that will ensure that people, recently bereaved, do not suffer from the ignorance of funeral workers.

A timely article, Looking after your best interests (pg 20), describes the role of HCV Clinical Nurse Consultants.

Working at a large metropolitan hospital, these staff are a key cog within the overall treatment program. They play an essential role in overall coordination, education and support. If, like me, you are considering combination treatment, you’ll be one step ahead with the help and involvement of your treatment centre’s HCV CNCs. Here at the Council, one could be mistaken for thinking that things would be comparatively quiet. We have two staff off on holiday - Stuart Loveday overseas on holiday and long service leave, and myself off for a months’ leave, sailing down to Tassie and back.

Stuart’s ten year long service rewards are well earned. He has guided the Council over a decade of hepatitis C developments and we are indebted for his thoroughness and commitment to the hepatitis C communities.

With two staff away, this is not to say that the atmosphere at the office is dull. Our new staff member, Holly Beasley, is settling in to her role as our Project Officer - Education & Development. Grant Malpas, our recently appointed Coordinator - Hep C Helpline (pg 39) is hard at it, giving the Helpline room a refreshing renovation and make-over.

The next time I sit writing an introduction, the trees outside (see left) will have lost their leaves and winter will be upon us. I hope your guardian angel watches over you and Edition 49 finds you fit and well.

Within Edition 49 we will carry news of the upcoming National Hepatitis C Treatments Awareness Week (see pg 37).

Until then, best regards, Paul Harvey Editor

2

The Hep C Review

Edition 48

March 2005

Front cover image by Melanie Faith Dove, courtesy of Fairfaxphotos.

Calling all members Thank you so much for your ongoing support for our Council.

Our 2005 membership year began on 1 March and renewals are now due.

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

Hep C Review editor: Editorial Committee:

Tim Baxter Paul Harvey Louise Houtzager Stuart Loveday Yvonne Preston Helen Taylor Lisa Waller

HCR medical & research advisors:

Prof Bob Batey Prof Yvonne Cossart Dr Greg Dore Prof Geoff Farrell Prof Sue Kippax A/Prof Geoff McCaughan Dr Ingrid van Beek Dr Alex Wodak

New applications for membership are always welcome.

Please refer to the loose-leaf flyer and membership form enclosed for your convenience.

Paul Harvey

S100 treatment advisor:

Mick Turner (AGDHA)

Proof reading: Prue Astill Philip Golderman Liz Roberts Helen Skinner MARLTON comic by Andrew Marlton, Doggy Times Cartoons: androom@optusnet.com.au

phone: 02 9332 1853 fax: 02 9332 1730 email: hccnsw@hepatitisc.org.au website: www.hepatitisc.org.au postal address: PO Box 432 DARLINGHURST NSW 1300 AUSTRALIA Hep C Helpline:

1800 803 990 (NSW) 9332 1599 (Sydney)

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

Contributions to The Hep C Review are welcomed and are subject to editing for spacing and clarity. Contributors should supply their contact details - although we do not publish such details unless asked to.

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 give us a ring.

ISSN 1440 - 7884

The Hep C Review

Edition 48

March 2005

3

contents News

Promotion

NSW government rules out gaol needle programs

6

Breath test your liver

6

Syringe program pays off

6

Mouse to help fight hepatitis C

6

New York votes to reduce harsh sentences for minor drug offences

7

Mbeki blood rejected

7

Hep C at epidemic levels among young injectors in London

7

Research update

US health officials probe hepatitis C cases

8

Oestrogen and fibrosis progression

32

Irish reform trust slams mandatory drug tests

8

Retinopathy rare with interferon therapy

32

Police station prisoners to be handed free needles 8

Blood test may reduce need for liver biopsy

33

Researcher cites bias in head-to-head trial

9

Dietary intake, metabolism and hepatitis C study

33

Hepatitis C Choices: third edition released

9

Heavy metals in Ayurvedic herbs

34

Low-dose therapy slows hep C

9

Caffeine reduces risk of raised LFT results

10

Increased serum capase activity marks HCV associated liver damage

40

Irish health minister apologises formally on hepatitis C case

10

Feature Liver cell transplant creates a little marvel

11

Hepatitis C, pregnancy and child raising

12

New guidelines for the funeral industry

14

Looking after your best interests

20

Drugs and harm minimisation: a social and health issue, not a criminal matter say Greens 21 Herbs and hepatitis C

24

Good intentions and getting fit

28

Decriminalisation of drugs in Portugal: a current overview

36

Successfully surviving therapy

18

Peelings of the Psyche

22

“I’m fortunate but I did not know it”

34

A little kindness

38

Opinion Injecting reason

19

Prison’s second sentence

42

The Hep C Review

29

National hepatitis C treatment awareness week

37

Hepatitis C and your health care

38

Book review In the Eye of the Needle: Diary of a medically supervised injection centre

Edition 48

March 2005

30

Long-term outcome of vertically acquired and posttransfusion hepatitis C infection in children 40 Non-invasive assessment of liver fibrosis by liver stiffness measurement

41

Excellent prognosis in hepatitis C with sustained response to interferon

41

Risk factors for liver cancer identified in asymptomatic HCV

44

Sleep and fatigue in people with chronic hepatitis C

44

Short treatment for some genotypes?

45

Interferon stabilises fibrosis progression

45

Spontaneous HCV clearance

45

A Council profile Introducing Grant Malpas, Coordinator: Hep C Helpline

My story

4

Hepatitis C: how will the media cover it?

39

Regular information articles HCV prevention poster

26

Interferon-based therapy

46

Complementary therapies

47

Support / info services

48

Noticeboard

50

Membership form

52

letters

Paying the piper?

A senior staff member of United Nations Office on Drugs and Crime (UNODC) sent the following email to more junior staff in November 2004.

“UNODC policy on needle exchange is reflected in the statement of [our] Executive Director. Nevertheless, and again taking our guidance from the [UN] conventions, the Commission on Narcotic Drugs and the International Narcotics Control Board, we neither endorse needle exchange as a solution for drug abuse, nor support public statements advocating such practices”

Hepatitis C can be stopped by good quality maintenance treatment At last there is some good news about hepatitis C. In an article published recently the ANZ Journal of Public Health*, we have shown that the incidence of HCV can be kept very low in drug users who are in treatment (with methadone or buprenorphine).

“The Project & Program Committee ... requested changes to the language of some projects to eliminate references to harm reduction and needle/syringe exchange. Please ensure that this policy is observed in our projects and programs. Please also ensure that references to harm reduction and needle/syringe exchange are avoided in UNODC documents, publications and statements.”

While much of the recent information about this virus shows continued sero-conversions as being the rule, this study shows that by using treatment consistent with established guidelines, such cases can become exceptional. In fact, it was our experience that nearly all of the few cases of sero-conversion were in patients who had their treatment interrupted and/or had been placed in custody for a time.

It is understood that this email followed discussion between senior UNODC and senior members of the US government following the re-election of George W Bush on 2 November. These discussions are also understood to have included the possibility of the US government withdrawing funding from UNODC if the desired changes did not take place.

Between January 1996 and July 2003, 54 treatment entrants were initially HCV negative. In the study period five sero-conversions occurred. Four sero-conversions occurred in the sub-group with interrupted opioid replacement therapy (n=20). One sero-conversion occurred in the sub-group with continuous opioid replacement therapy (n=34).

This email raises many questions. HIV/AIDS is the greatest global health problem since the Black Plague of the 1340s. It is getting worse. By 2010, the epicentre will shift from Africa, where injecting is a small problem, to Asia home to half the world’s population and a region where drug injecting is the major or second major route of transmission in most countries.

The authors conclude: “HCV incidence among IDUs receiving opioid replacement therapy in our clinic was relatively low. Those IDUs without interruptions to their treatment appeared to be at particularly low risk of HCV infection. These findings support the role of opioid replacement therapy in HCV prevention for IDUs.”

The evidence that harm reduction, in the form of methadone maintenance treatment and needle syringe programmes, reduces HIV infection substantially is now incontrovertible.

It is of course the right of the US government to be less than luke warm about methadone maintenance treatment and needle syringe programmes even though the US has the highest proportion of AIDS cases attributed to injecting drug use in a developed country. But exporting this folly to international organisations ensures that HIV/AIDS will be an even bigger problem in the future.

Andrew Byrne. * Hallinan R, Byrne A, Amin J, Dore GJ. Hepatitis C virus incidence among injecting drug users on opioid replacement therapy. ANZ Journal Public Health (2004) 28;6:576-578

UNODC is part if the UNAIDS consortium and should stand up to threats from member governments - including the US - if these threaten to imperil HIV control.

It is vital that pragmatic, effective, evidence based responses to the threat of HIV spreading among IDUs are established and expanded quickly and soon reach a scale commensurate with the problem.

Alex Wodak

The Hep C Review

Edition 48

March 2005

5

news NSW government rules out gaol needle programs Australia - The New South Wales government has rejected as “ridiculous” a proposal to set up needle exchanges in the states’ correctional centres.

The proposals were made in “Supply, Demand and Harm Reduction Strategies in Australian Prisons: Implementation, Cost and Evaluation,” a report published today by the Australian National Council on Drugs.

Justice Minister John Hatzistergos said, “Drugs are illegal in correctional centres and we devote a huge amount of time, effort and resources to keep them out.”

He said the government already has rehabilitation and counselling services for the 70-80 percent of inmates who had drug problems before entering the correctional system. “But we will not countenance handing out needles to inmates to assist them with illegal activity inside our jails,” the minister said.

“Why on earth would we consider undermining our zerotolerance policy on drugs by allowing a needle exchange?”

Syringe program pays off Australia - St George Hospital’s Needle and Syringe Program (NSP) has contributed to a reduction in the transmission of HIV, hepatitis and other diseases in South East Sydney Health’s area, a report has found.

Director of sexual health Christopher Carmody said many people believed a program focused on stopping illicit drug use should be implemented but the reality was that some people would inject drugs regardless of the risks.

“Many studies have shown that harm-reduction services such as NSP do not contribute to the uptake of illict drug use, nor do they increase the level of drug use among people who inject drugs,” Dr Carmody said.

“Initiation into drug use is complex and influenced by cultural, familial, psychological and historical factors.”

If you are in NSW and find a discarded syringe, phone the Needle Cleanup Hotline on 1800 NEEDLE (1800 633 353).

Abridged with thanks from The Leader, 14 Dec 2004.

The minister said, “The needle-exchange proposition is ridiculous and is an unacceptable safety risk to staff.”

Despite opposing needle-exchange programs in prisons, Hatzistergos said the government acknowledges the need for them in the community.

Abridged with thanks from an AAP news item, 16 Nov 2004. (Also see pgs 19 & 42.)

Mouse to help fight hepatitis C India - A genetically engineered mouse will soon be used in a new initiative by Indian and German scientists to prevent hepatitis and other communicable diseases.

Breath test your liver Australia - Researchers have developed a breath test which could replace painful liver biopsies to detect liver fibrosis and cirrhosis in people with liver diseases including hepatitis C. The breath test, which is still under evaluation, involves a drink which has been ‘tagged’ with a special cargon molecule. After one hour, the breath test can measure the amount of tagged carbon molecules in expired breath, giving doctors a measure of liver damage.

6

Abridged with thanks from an AAP news item from Positive Living, Oct/Nov 2004.

The Hep C Review

Edition 48

March 2005

Under an agreement to be signed in March by the German Research Centre for Biotechnology (GBF) and the Indian Council of Medical Research, scientists will develop a mouse that would be infected with the hepatitis-C virus, said Rudi Balling, GBF’s director.

“So far, it has been impossible to create a study model for the disease. But we are trying our best since a mouse in many cases behaves like humans,” Balling told IANS on the sidelines of the Indian Science Congress here.

The mouse would receive human immune cells derived from the umbilical cord of a foetus and be infected with the “hepatocides” that cause the Hepatitis-C disease.

“It would help in our study to a great extent,” said Balling, whose organisation does a lot of work with “mouse genetics”.

This Indo-Asian News Service item was abridged with thanks from www.hcvadvocate.org

news New York votes to reduce harsh sentences for minor drug offences

Hep C at epidemic levels among young injectors in London

USA - After years of false starts, state lawmakers have voted to reduce the steep mandatory prison sentences given to people convicted of drug crimes in New York State, sanctions considered among the most severe in the nation.

Levels of hepatitis C among young injecting drug users across London are reaching epidemic levels, report researchers from Imperial College London, the Health Protection Agency and the London School of Hygiene and Tropical Medicine.

The push to soften the so-called Rockefeller drug laws came after a nearly decade-long campaign to ease the drug penalties instituted in the 1970’s that put some lowlevel first-time drug offenders behind bars for sentences ranging from 15 years to life.

According to the study, published in the British Medical Journal, four in ten new young injectors now has hepatitis C, while three per cent are now infected with HIV.

While some elected officials and drug policy advocates hailed the drug sentencing changes as a major step forward, others complained that they did not go far enough. They complained that inmates serving what they called unduly long prison terms for lesser crimes would not be allowed to apply for early release, and that judges were not given the power to sentence some offenders to treatment programs rather than prison.

A study by the Democrats in the State Senate found that New York State imposed the harshest penalties in the nation for low-level drug offenders. It found that 32 states, including Texas and Florida, offer probation to non-violent offenders who sell small amounts of drugs, and that New York was the only state that required more than three years in prison for such offences.

Abridged with thanks from a New York Times article, 8 Dec 2004, circulated via ADCA Update.

Mbeki blood rejected Blood donated by the South African president, Thabo Mbeki after an urgent appeal for donors was destroyed because it was regarded as a health risk.

The country’s National Blood Service incinerated the President’s donation after he failed to complete a compulsory questionnaire about his personal health, a spokesperson said on Sunday. - The Telegraph, London.

Hepatitis C, which can cause serious and sometimes fatal liver damage, is mainly spread by sharing needles and syringes. Preventing HCV transmission among injecting drug users is critical to avoiding significant later health consequences in the population and associated treatment costs.

Dr Ali Judd, from Imperial College London, based at Charing Cross Hospital, and one of the authors of the study, comments: “Hepatitis C is now spreading at epidemic levels across London and HIV incidence is worryingly high, which if unchecked will lead to an increase in the total number of HIV infections. There is an urgent need for new and comprehensive programmes to tackle this growing problem.”

The study was made possible through the use of saliva and blood spot tests for HCV and HIV developed at the Health Protection Agency Centre for Infections. Of those that were HCV negative or HIV negative at the first interview they found 42 per cent and 3.4 per cent were infected with HCV and HIV respectively one year later. The researchers also found high levels of syringe sharing, with one in four reporting injecting with needles and syringes that had been used by someone else in the last four weeks and one in two sharing other injecting paraphernalia.

The researchers believe a number of factors may have contributed to the rise in the incidence of HCV and HIV. These include a rise in the number of injectors, without any increase in the number of syringes distributed through syringe programmes, more risky injecting behaviour in newer injecting drug users, and greater levels of crack injection. There has also been a lack of targeted health promotion campaigns about hepatitis C in recent years.

Abridged with thanks from www.hcvadvocate.com

Reprinted with thanks from the Sydney Morning Herald, 7 Dec 2004.

The Hep C Review

Edition 48

March 2005

7

news US health officials probe hepatitis C cases USA - A vial of a radioactive solution, 12 hepatitis C cases and one death so far are the elements of a mystery that has left health officials pondering.

The cases were from a group of 16 people injected with the solution for routine heart-stress testing, all from a single vial produced by a Timonium pharmacy run by Cardinal Health.

Among them was John Leto, 80, a Brooklyn Park man who died of pneumonia on Christmas Day after suffering from hepatitis C, a disease of the liver.

Investigators are now trying to learn how the 12 were infected, a probe that could take months to complete, said John Hammond, a spokesman for the state health department.

Cardinal Health said the investigation is focusing on the way the doses were prepared and not on the pharmaceutical tracer contained in the doses.

The US Centres for Disease Control said recent studies have found the hepatitis C virus can survive on surfaces at room temperature for at least 16 hours, but no longer than four days. Medical and dental procedures in the United States generally do not pose a risk for spreading hepatitis C, but it has occurred in a few situations when supplies or equipment were shared, according to the CDC web site.

Irish gaol reform trust slams mandatory drug tests Ireland - The Irish Penal Reform Trust has criticised Justice Minister Michael McDowell’s plans to introduce mandatory drug testing in all Irish gaols.

The trust said today that the plan would have no impact on drug abuse among inmates and could even make the problem worse.

It said a comprehensive drug treatment program to help reduce the spread of HIV and Hepatitis C in gaols would be a better use of resources.

IPRT director Rick Lines said evidence from other countries showed that mandatory testing was ineffective and counterproductive.

“It has, in fact, had an influence in encouraging people to switch their drug of choice and their method of drug use from smoking cannabis to injecting heroin,” he said.

“This is specifically because injecting heroin is less easily detected by drug-screening kits. As a result, you have a situation where you’re increasing the risk of transmission of HIV and Hepatitis C in gaols while not making a significant dent in the overall levels of drug use.”

This http://wjz.com article was abridged with thanks from www.hcvadvocate.,com

This Ireland Online article was abridged with thanks from www.hcvadvocate.org

Police station prisoners to be handed free needles Scotland - Prisoners are to be given free needles by police after it emerged that two-thirds of drug users taken into custody in the city are infected with hepatitis C or HIV.

“A programme like this is about reducing the potential harm to both the police and to the user.”

The new scheme is intended to decrease the risk of police officers being jabbed by hidden syringes while searching suspected criminals.

All prisoners are routinely searched before being placed in one of 40 holding cells at St Leonard’s police station where people arrested in Edinburgh are generally held overnight.

Lothian and Borders Police Deputy Chief Constable Malcolm Dickson today predicted the move would reduce the chances of officers becoming infected with such diseases.

Research has shown that about two-thirds of the 6,000 prisoners who use drugs who pass through the station’s cells every year are infected with the hepatitis C virus.

Many also have HIV.

“We are not condoning or encouraging drug use, but we cannot be ignorant about the fact that people are going to take drugs, whether or not we tell them not to,” he said.

Needle injuries to police personnel are not uncommon and individuals face an anxious wait of several months before they can be given confirmatory blood tests.

8

The Hep C Review

Edition 48

March 2005

Abridged from The Scotsman, 14 Jan 2005

news Researcher cites bias in head-tohead trial

Hepatitis C Low-dose Choices: therapy third edition slows hep C released

USA - A lead researcher for a highstakes trial comparing the world’s topselling drugs for hepatitis C said the study’s design could “bias” results in favour of Schering-Plough’s product.

USA - The Hepatitis C Caring Ambassadors Program (HCCAP) announced the internet release of the newly updated 3rd edition of Hepatitis C Choices: Distinctive Viewpoints on Choices for Your Hepatitis C Journey. The book is authored by a team of 20 leading medical experts and community advocates. ‘Choices’ presents an objective review of conventional and alternative treatment options for people with hepatitis C.

“Unfortunately life is not perfect and this study is not perfect as well,” Dr. John McHutchison, co-lead investigator of the Schering-Plough trial, told Reuters in an interview on Thursday.

McHutchison, a Duke University researcher, said the study design will probably allow more patients receiving Peg-Intron to stay on stronger doses of ribavirin than those taking Pegasys.

“Maintaining the highest tolerable dose of ribavirin, regardless of which interferon is used, is very important for controlling the virus, particularly in the early part of treatment,” he said.

Peg-Intron patients who develop anaemia or other side effects from ribavirin will have their daily dose of the pill reduced by 200 milligrams, with subsequent 200-milligram cuts if necessary. By contrast, Pegasys patients with side effects must have their ribavirin cut back to 600 milligrams in one fell swoop.

“The dose reductions for ribavirin are not equivalent in the two arms of the study and could therefore introduce a potential bias” in favour of the PegIntron arm of the trial, McHutchison said.

The FDA insisted that instructions on the Pegasys drug label be followed — any ribavirin reductions must be to 600 milligrams.

This Reuters article abridged from www.hcvadvocate.org

The book thoroughly reviews conventional (western) treatment along with naturopathic, Ayurvedic, homeopathic, and traditional Chinese medicine management approaches.

Other important topics such as disease progression, nutrition, laboratory testing, and health care consumer information are also included. In addition to extensive updates, ‘Choices’ has two new chapters on integrative medicine and immunology.

According to Dr Robert Gish of the Liver Transplant Program at California Pacific Medical Centre in San Francisco, “Hepatitis C Choices provides not only choices on treatment for hepatitis C, it delivers a detailed overview of background information for patients seeking answers to key facts on why their specific treatment pathway is correct for them.”

USA - For the first time, a study confirms what many doctors thought was true: The progression of hepatitis C can be prevented or delayed by using pegylated interferon as longterm maintenance therapy in patients who have not responded to full-dose interferon therapy.

The study, led by Dr. Nezam Afdhal of the Beth Israel Deaconess Medical Centre, includes 550 people with advanced fibrosis who have previously failed interferon therapy.

“It’s a totally different approach” from trying to eradicate the virus with fulldose interferon, Dr. Afdhal said in an interview. In patients for whom interferon does not eradicate the virus, many die of complications from the disease, he said.

“Why not try to lower the dose to prevent complications” and see what would happen, he said he thought before beginning the study.

Patients experience much fewer complications on about one-third the regular dose, he said. Since many patients on interferon fail to complete therapy due to side-effects, this is an important outcome.

This www.medicalpost.com article abridged from www.hcvadvocate.org

The Hepatitis C Caring Ambassadors Program is a US nonprofit organisation dedicated to increasing awareness about the hepatitis C epidemic and improving the lives of those afflicted with the disease.

This Reuters article abridged from www.hcvadvocate.org ‘Choices’ is downloadable from www.hepcchallenge.org

The Hep C Review

Edition 48

March 2005

9

news Caffeine reduces risk of raised LFT results

Irish health minister apologises formally on hepatitis C case

USA - In a large study including persons at high risk for liver injury, consumption of coffee and especially caffeine has been found to be associated with lower risk of elevated alanine aminotransferase activity.

Ireland - The Deputy Prime Minister and Minister for Health, Mary Harney, has formally apologised to a 24year-old man who contracted hepatitis C from his mother at birth.

Dr Ruhl and colleagues from Maryland in America designed a study to investigate whether drinking caffeine reduced the risk of elevated alanine aminotransferase (ALT) activity in persons at high risk for liver injury.

The apology was issued after a settlement was reached in a High Court case taken against her and the Blood Transfusion Service Board. The terms of the settlement are confidential, but they are believed to involve a payment of around 2 million Irish pounds.

In this national, population-based study - reported in Gastroenterology 2005: 128 (1) - the researchers recruited a total of 5944 adult participants from a recent US National Health and Nutrition Examination Survey.

The participants exhibited excessive alcohol consumption, viral hepatitis, iron overload, overweight, or impaired glucose metabolism. The researchers found elevated ALT activity in 8.7% of this high-risk population.

In unadjusted analysis, the research team noted that lower ALT activity was associated with increasing consumption of coffee and caffeine.

Dr Ruhl concluded, “In this large, national, populationbased study, among persons at high risk for liver injury, consumption of coffee and especially caffeine was associated with lower risk of elevated ALT activity.”

This www.gastrohep.com article was abridged with thanks from www.hcvadvocate.org

Staff arrivals Holly Beasley has been appointed to the position of Project Officer - Education & Development, within the Council’s Education & Development Team.

Holly comes to us from Perth where she was working for Avon Youth Services as an alcohol and drug youth officer.

Holly’s main priorities will be representing the Council on the numerous localised committees, maintaining the secretariat function for Heplink - the key network of NSW HCV workers and agencies.

She will also be coordinating the NSW arm of the upcoming National Hepatitis C Treatment Awareness Week Campaign.

10

HCCNSW

The Hep C Review

Edition 48

March 2005

The man sued the Minister for Health and the BTSB for the pain and suffering caused by contracting the disease from his mother who had been given an infected blood product in 1977. He was 13 when he was diagnosed positive.

This news article from www.rte.ie/news was downloaded with thanks from www.hcvadvocate.org

feature

The Sydney Morning Herald’s Amanda Dunn reports on a medical operation that has turned the theoretical into the practical.

E

ight-year-old Rama, who has a metabolic liver disease, became Australia’s first liver cell transplant recipient at the Royal Children’s Hospital in Melbourne. If everything goes according to plan, her life could change forever.

A defective liver that has left her jaundiced and bound to a light box for treatment eight hours a day for all of her short life may soon function properly after she became Australia’s first liver cell transplant recipient.

It is hoped the transplant, a relatively simple procedure in which healthy cells are infused into the liver, will mean Rama will not need a full organ transplant - for which waiting lists are long - later in life.

Rama was born with the genetic condition Crigler-Najjar syndrome: her liver cannot process the yellow pigment bilirubin in the blood, which is usually removed from the body through bile.

“Now her liver is unable to do this and the bilirubin builds up in the blood and can cause brain damage,” said Winita Hardikar, head of hepatology at Melbourne’s Royal Children’s Hospital, who performed the procedure with Katie Allen, a paediatrician at the Murdoch Children’s Research Institute.

Before the transplant, Rama would spend eight hours a day in a specially made phototherapy box, which would process the bilirubin her liver could not.

“Unfortunately this is a terrible thing on her lifestyle because as an eight-year-old she has to wake up at 4.30 in the morning, sit in this box for three hours, then she goes to school, then she comes home

and sits for another four hours,” Dr Hardikar said. “So it’s a big impingement on lifestyle, she goes to bed at midnight, and it’s really surprising what a bright button she is.”

The doctors took cells from a healthy donor, and inserted a catheter into Rama’s stomach. Over the course of an hour, they slowly injected the liver cells into the main vein that feeds into Rama’s liver.

“What happens is they have this amazing ability to then find their home in the substance of the liver and take up, just like Rama’s other cells,” Dr Allen said.

As with a full organ transplant, there is a chance Rama’s body could reject the transplanted cells, and she is being treated with anti-rejection medication.

But so far, it appears to have been a success, with Rama able to return home yesterday. Her condition will be closely monitored, and she still needs some phototherapy, but much less than she once did.

Had Rama not had the cell transplant, Dr Hardikar said, she would inevitably have needed a full liver transplant.

Transplant waiting lists are long: doctors have to wait 10 months for a suitable donor from which to extract the liver cells for Rama’s transplant.

The technique means that, in the future, one liver may be able to provide cell transplants to many more patients, rather than just one or two as is now the case. It has been used on about five to 10 children worldwide, including two with the same condition as Rama.

Abridged with thanks from the Sydney Morning Herald, 8 December 2004. Photo by Craig Abraham, courtesy of Fairfaxphotos.

The Hep C Review

Edition 48

March 2005

11

feature

Many misconceptions do exist in relation to hepatitis C and pregnancy and in this article we will seek to make discussion of this issue and decision making around these issues more reasonable and hop

By Robert Batey and Tracey Jones Hepatitis C affects many aspects of life and there is no question that there is a very significant interaction between hepatitis C and a woman who is considering pregnancy and child bearing and raising.

Any severe liver disease makes pregnancy more difficult to achieve but as most people with hepatitis C have mild disease and are often these days diagnosed early in the course of their illness it is not unusual for women to fall pregnant whilst having a hepatitis C infection. The first point to stress is that hepatitis C itself does not have any apparent adverse effects on a pregnancy or on foetal development.

It is possible that a pregnant woman may contract hepatitis C whilst pregnant and if she were to experience a severe bout of hepatitis there is an increased risk of foetal loss but, as we know, acute, severe illness from hepatitis C is most unusual and we are not aware of any cases of foetal loss resulting from an acute hepatitis C infection in early or late pregnancy.

The key issues that really require clarification are:

•

the risk to the baby of infection with hepatitis C virus,

•

the advisability of treatment for hepatitis C pre pregnancy, during pregnancy or after pregnancy and

•

the risks to a pregnant mother of a partner undergoing hepatitis C treatment.

The risk of transmission of HCV from mother to baby Hepatitis C can be transmitted from mother to baby and whilst the exact time of transmission is unclear it is still felt by most authorities that transmission occurs at or around the time of delivery. Hepatitis C is only transmitted to the baby if the mother is positive to hepatitis C RNA (genetic material) at the time of delivery.

Hepatitis C antibody positive mothers who are RNA negative pose no risk to the baby at the time of delivery although the baby will have maternal hepatitis C antibodies circulating for up to 14 months following delivery even if the mother is RNA negative. This simply reflects the normal situation of maternal antibodies crossing to the foetus to protect the baby against a variety of infections in the peri partum period.

12

The Hep C Review

Edition 48

March 2005

The risk of transmission from a hep C RNA positive mother to a baby when all precautions are taken is approximately 6 – 8%. Managing obstetricians and midwives need to minimise any trauma to the skin of the foetus so that the chance of transmission through broken skin is minimised.

Whilst a few recent papers suggest that caesarean section may reduce the risk of HCV transmission, those studies have not been large enough to recommend that Caesarean section be done as a routine in HCV RNA positive mothers. This may change in time. In Australia at the moment it would be standard practice to recommend vaginal delivery, with staff taking precautions to avoid blood exposure of the newborn child.

Babies who are born to hep C RNA positive mothers can be tested for hepatitis C RNA and the timing of that is best left for 3 months because of the occasional baby having a transient hep C RNA viremia immediately after delivery.

Measuring hepatitis C antibodies will not answer the question as to whether the baby has been infected as the presence of maternal antibodies in uninfected babies is a reality for up to 18 months.

Recommended testing policy would be a hep C RNA on the baby at 3 months or 6 months if one is concerned about identifying transmission early in the baby’s life.

Treatment is not available to babies or children under the age of 18 unless there is very clear evidence of severe progressive liver problems.

One area that causes hep C positive mothers a great deal of concern is whether to breastfeed or not. Are they putting their child at more risk? Studies have shown that while indicators of the virus have been found in breast milk and colostrum, scientists believe that the virus is inactivated in the gut of the child. They do not believe that it can be transmitted through colostrum or breast milk. The main risk factor to consider is if the breasts are cracked or blood is present for any reason.

Hepatitis C treatment and pregnancy Should a pregnant woman be treated for hepatitis C? It is abundantly clear that the toxicity of ribavirin to developing foetuses renders it an inappropriate drug for use in pregnancy. Mothers who are hep C positive should be advised that their risk of transmission to family and to the foetus is low and that the pregnancy will progress safely so treatment should not be used in the pregnancy at all.

feature

k to provide information pefully, easier.

It is advised that individuals considering pregnancy might wish to have their antiviral therapy undertaken before the pregnancy commences. These individuals should be reminded that the earliest time that is considered safe to conceive after the use of ribavirin is 6 months after the drug has been discontinued. This relates to the long half life of the drug in the body. Numerous studies suggest that breast feeding is not a risk factor for the transmission of hepatitis C and mothers who deliver a baby are encouraged to breast feed if that is their desire.

Within any household there is a risk of transmission of hepatitis C from blood exposure and all family members need to be aware of the risk this means of transmitting hep C at all times. Families should be advised of the precautions to take to avoid accidental transmission from sharing equipment in the household that may be contaminated with blood such as toothbrushes, razor blades, hair combs etc. Wherever a blood spill has occurred the affected individual should clean that up if possible, if not, other members of the family should use gloves, paper towelling and the area should be cleaned with bleach after the blood spill has been cleared up. These actions will only minimise the risk of transmission in the household setting though, as bleach does not kill the hepatitis C virus.

Hepatitis C treatment of a partner: risk to a pregnant woman It is advised that female partners of males who are on antiviral therapy should not consider pregnancy whilst their partner is on treatment or for 6 months after the partner has ceased therapy. This is based on a very small theoretical risk that ribavirin could be transmitted in the semen having an adverse affect on foetal development. It is stressed that this risk remains theoretical at this stage.

Conclusion While there is much concern about possible adverse effects of HCV infection in the pregnant woman, it has to be stressed that much of the concern is ill-founded. HCV infected women are likely to have a normal pregnancy and the baby is most likely to be born free of the virus.

This does not mean that patients in this particular situation should not receive support, information and management of their symptoms during the pregnancy. It is imperative that antiviral therapy not be used during pregnancy. It is also critical that patients not be given advice to terminate the pregnancy so that treatment may be given. This approach is not appropriate in any patient. It is of interest that in most pregnant HCV infected patients, the ALT level is normal as the immune system tends to be less active against the virus during the pregnancy. Normal ALT levels in pregnancy should not be taken to mean the virus has been cleared. An HCV RNA test remains the only way of determining the infective status of the patient.

Above photo downloaded with thanks from www.google.com/images

Professor Robert Batey is Area Director for Drug and Alcohol Clinical Services, Hunter and New England Health; and Tracey Jones is Clinical Nurse Consultant-Hepatitis C: Hepatitis C, Department of Gastroenterology, John Hunter Hospital, Newcastle.

The Hep C Review

Edition 48

March 2005

13

feature

Over the years, there has been great trauma for fa arbitarily decide on how the funeral will be carried industry, health services and local government to Following our introduction we present excerpts fro

Introduction No matter our religion or philosophical beliefs, the two most central happenings in our lives are our birth and our death.

Several times in the past we have reported on family and friends being denied the last chance to view their departed loved one.

In a previous edition of The Hep C Review (Ed32, p15), Matthew describes his family’s experience of funeral workers who acted in ignorant fear and left ongoing scars that remain today. This abridgedment highlights the pain of his hepatitis C story.

I am writing about when I lost my brother. He died so suddenly that our family didn’t identify him but we planned to have a viewing with him at the funeral.

With one day’s notice, the funeral directors [phoned to say] “We have your son’s body back on the Central Coast so the funeral is right to go ahead tomorrow as planned.

But your son had hepatitis C and it is a highly contagious disease. Because you’re not allowed to view a person with hepatitis C there can’t be a viewing.”

It wasn’t until months later [after writing to the Minister for Health] I found out that we as a family had every right to view my brother. But it is too late, my brother is buried.

My mother and I have suffered extra grief because of the actions of the funeral directors. All my mother wanted to do was see her son of 28 years for the last time in her life.

This right was taken away.

Matthew, NSW In this edition, we are able to report that as a result of letters to the Minister from Matthew and other affected families, ongoing lobbying by the Council, other related organisations and individual health care workers, and following the NSW Anti-Discrimination Board Inquiry into Hepatitis C related discrimination (C-Change), revised guidelines on funeral industry practices will now help prevent these situations happening again.

Following this introduction are excerpts from the guidelines that particularly relate to HCV and other infectious diseases.

14

The Hep C Review

Edition 48

March 2005

Image downloaded with thanks from www.google.com/images

feature

mily and friends when a person with hepatitis C infection dies and funeral industry workers out. The NSW government has recently initiated revised guidelines is to assist the funeral understand and comply with the Public Health (Disposal of bodies) Regulation (2002). om the guidelines that particularly relate to HCV and other infectious diseases.

4.1 Bodies to be placed in body bags There are three main issues to be considered before a body is moved (Clauses 13 and 14). The first is to ensure that the body is bagged or wrapped securely in high quality material so that there is no risk to public health and hygiene from the body. The second is to ensure that the body is clearly identified. Thirdly, if the deceased had any disease which could be infectious or pose a risk to people handling the body, then warning labels must also be attached to the bagged body.

The Regulation specifies the material to be used for the bag or wrapping and its dimensions. A body bag or wrapping must be made of low density polyethylene film of not less than 150 micrometres in thickness. This standard has been set to ensure that the bag or wrapping will cope with the weight/strain of the body when lifting and moving, will not permit body fluids to soak through the material and will resist moisture from refrigeration or other sources from coming into contact with the body. A bag for an adult must measure at least 2.4 metres in length and 1 metre in width. A bag for a child must be at least 1.5 metres in length. if wrapping is used for an adult it must be at least 2.4 metres in length when open and flat and 2 metres in width. Wrapping for a child must be at least 1.5 metres in length.

The name of the dead person, or some other identification of the person, must be written clearly and indelibly on the top outer surface of the bag or wrapping. The responsibility for correctly bagging and labelling the body lies with the hospital when the body is at a hospital. (The definition of hospital as used in the Regulation includes nursing homes, private hospitals, day procedure centres and institutions under the Mental Health Act 1990) The Regulation states that the chief executive officer is

responsible for compliance with bagging of bodies. In practice, hospital CE0s will delegate to responsible staff.

The funeral director may actually complete this task for the hospital but the hospital CEO remains responsible to ensure that the task has been done. In any other place or premise, the funeral director or other person removing the body is responsible for complying with correct bagging and labelling of the body.

An additional responsibility for the person bagging and labelling the body is to ensure the correct labelling when there is reason to believe that the body is infected with a List A or List B disease (see over page). In this situation the bag or wrapping must also be clearly and indelibly marked with the appropriate words either ‘INFECTIOUS DISEASE -LIST A - HANDLE WITH CARE’ or ‘INFECTIOUS DISEASE - LIST B - HANDLE WITH CARE’.

Should the original bag or wrapping be replaced for any reason, then these words must be written on the new bagging or wrapping.

Hypothetical case For many years, the Truly Excellent funeral Company has … built a reputation for providing sensitive and respectful services. On several occasions they have been called to remove the body of a man who has died at home from [infectious disease such as hepatitis C]. If family and friends want to remain in the room while the body is wrapped and prepared for transfer then the funeral directors are careful to explain what they are obliged to do while wearing protective clothing and labelling the wrapped or bagged body.

The funeral directors prefer that the family and friends should leave them in privacy to do these tasks. They also prefer that no family or friends see the labelling of the body bag with the required words for a List A disease (see over page). Once the labelling is done they completely cover the bagged or wrapped body with a plain coloured sheet and possibly a stretcher cover as well so that no labelling can be seen as they carry the body from the room, out of the home and into the vehicle.

The Hep C Review

Edition 48

March 2005

15

feature 6.1 Transmission of disease and standard precautions Bacteria and viruses which cause disease are carried on the skin and in the blood and other body fluids. Some bacteria and viruses can still be active in the body after death. This means that if any of the infected body’s fluids come into contact with a person and find a way to enter their body, e.g. through a break in the skin or through the mouth or nasal cavity then there is the possibility of causing infection in that person. For most blood borne diseases (like hepatitis C or HIV) this risk is extremely small as the viruses are quite fragile and blood carrying infectious particles has to quickly enter the bloodstream before it could cause infection.

It is always possible that a person may have had a blood borne disease such as hepatitis C or HIV that was never diagnosed or recognised when they were alive. Hospitals and other settings where there is any risk of occupational transmission of infection from living people operate under the same basic principle which is to assume that everyone is potentially infectious. Therefore when carrying out any invasive procedures or exposing workers to another person’s body fluids, standard precautions for infection control are followed.

Even though the risk is not large in the first instance in handling the body of a person who may have died with an infectious disease, the risk of transmitting infection can be almost entirely eliminated by following the standard precautions for infection control. Such standard precautions in the handling of all bodies, alive or dead, are a requirement under occupational health and safety legislation.

For the purpose of the Regulation, infectious diseases which could pose some risk to people handling and preparing bodies have been divided into List A and List B diseases.

List A diseases Creutzfeld-Jacob disease (CJD), Hepatitis C, Human immunodeficiency virus infection (HIV).

These three diseases are grouped as List A diseases because the bodies of people known to have died with these conditions should be handled with caution and care.

The actual risk of the transmission of virus after death is extremely small and is manageable by following standard precautions.

List B diseases Diphtheria, Plague, Respiratory anthrax, Smallpox, Tuberculosis, any viral haemorrhagic fever (including Lassa, Marburg, Ebola and Congo-Crimean fevers).

One of the features that List B diseases have in common is the potential for airborne transmission. This means that infected particles from an infected body could be breathed in by a person in close contact with the body, particularly if they are manipulating the body in such a way as to expel air from the lungs.

The precautions include practices like wearing gloves and other protective clothing and carefully managing waste.

Detailed information is available in the NSW Health Department Circular No. 2002/45: Infection Control Policy.

In summary..

Under the previous Public Health Regulation, funeral directors should use their discretion in allowing viewings of bodies with HIV or hepatitis C. This situation led to many distressing occasions for families and friends. They had been able to touch, kiss and hold their relative or friend when they were alive but found they were denied even a final look at their body, let alone the opportunity to touch or kiss them goodbye.

16

The Hep C Review

Edition 48

March 2005

feature 6.6 General management 6.7 Management of of bodies with bodies with List A infectious diseases diseases There are other infectious diseases which do not appear as List A or List B diseases. Some of them are potentially more infectious than the List A diseases. Both hepatitis B and hepatitis A are infectious. However immunisation is available against both these forms of hepatitis. Again the prevalence of these types of infections in the community is the reason to practice standard precautions when handling all bodies.

The Regulation puts no restriction on viewing bodies of people who have had List A infections.

Protective clothing

However in recognition of some concern in the funeral industry about the handling of bodies with List A diseases, the Regulation does stipulate that a person who carries out an invasive procedure (one in which the dermis is cut) must have completed certain training. They must have completed a training course, or series of courses, in mortuary practice, infection control procedures and occupational health and safety and these courses must have been approved by the Public Health Unit (Clause 12). There is a NSW Health policy in place on approval for these courses. Funeral directors should contact their local Public Health Unit to find out about the availability of approved courses.

When a person is placing in a bag, or wrapping, a body that they have reason to believe has an infectious disease, the person must wear protective clothing. The Regulation (Clause 14) stipulates a clean outer garment such as a gown, overalls or jumpsuit; a clean pair of disposable gloves, a disposable mask and appropriate eye protection.

Immediately after use, the wearer is responsible for ensuring that all the items are placed in a clean plastic bag. They must then be laundered as soon as practicable or if they are disposable items, they must be disposed of promptly as contaminated (clinical) waste.

When embalming a body with a List A disease or when carrying out more minor procedures to prepare the body for viewing, standard precautions should be followed in the same way as they would be in handling or doing invasive procedures on every body.

Bodies believed to be infected with a List A disease must have the bagging or wrapping marked indelibly with ‘INFECTIOUS DISEASE - LIST A - HANDLE WITH CARE’ (Clause 13). Refer to Section 4 of this document on handling of bodies.

It should be noted that the importance of this issue is mainly to do with the trauma associated with the inevitable death of loved ones who may inadvertently have hepatitis C - as opposed to the possibility of dying from hepatitis C related complications. Indeed, only about four in every hundred people with hepatitis C will face liver cancer or liver failure and in these cases, it is only after 30 or 40 years of having chronic hepatitis C.

C-Change, a comprehensive report from the AntiDiscrimination Board on discrimination related to hepatitis C documented these cases.

This was a difficult situation for the funeral directors who were acting accordingly to the regulations and believed that they were taking appropriate precautions both to protect the health of their own staff and the friends and families involved.

It is important to understand that under the new Regulation (Clause 16) there is no restriction on viewing bodies with HIV or hepatitis C. There is also no discretion for the funeral director to refuse a viewing on the basis of possible infection with a List A disease.

For further information, please contact the NSW Hep C Helpline (pg 48).

Image downloaded with thanks from www.google.com/images

HCCNSW

The Hep C Review

Edition 48

March 2005

17

my story

I

n November 2003, I started a twelve-month course of weekly injections of pegylated interferon together with ribavirin capsules. I knew it would be hard work. But I didn’t realise how challenged I’d be by the side effects.

This is about how I survived those side effects.

I’d had chronic Hep C since about 1994. I’ve also been HIV positive since 1985, responding well to combination ante-retroviral medication. With that background and at age 58, my specialist said I could only hope for a one-infive chance of success.

But I was optimistic – I was fit, didn’t drink, ate well and in regular employment. From my experience with the strict regime needed for HIV medications, I knew the value of a personal routine. I’d also learned about coping with the side effects of medication.

I was determined to keep on working full time. The alternative was to sit at home, thinking about how rotten I felt. Besides, I had plans for the future and continuing to work was a big part of those plans.

So I structured my life around getting to work each day, five days a week. My low energy levels were a problem.

But I found that I could function better in the mornings than later in the day; and so I adjusted to that.

Encouraged by what I read in the Hep C Review about the experience of a Hep C positive woman benefiting from exercise, I swam three or four mornings a week – not far, but enough to give me a sense of achievement. And it did make me feel physically better.

18

The Hep C Review

Edition 48

March 2005

Small amounts of regular exercise were built into my routine – very much on a trial and error basis - and in all of this, I had the professional support and advice of my hepatologist. I was able to make well-informed decisions about my treatment and its side effects. He was always ready to discuss even the most ordinary things about my routine. Better still, he collaborated with my HIV specialist on the drug interactions. Regular blood tests ensured that my drug intake was altered when necessary.

Still, work remained the focus of my routine. I had to ensure I always had plenty of sleep every night. Yes, it was dull – family and friends knew not to ring me up after 8 pm, because I’d be in bed and wouldn’t answer the phone.

In this, and in so many ways, they were all supportive. So were my work colleagues. All of them had to put up with my grumpiness and whinging about how rotten I felt. And if I just couldn’t get out of bed, I stayed put until the energy levels rose again.

It was the longest twelve months I’ve experienced. But all the time I stuck to my routine and believed in a successful result. I continued to make plans for overseas travel and doing some more study down the track. And what a Christmas present I had! Two months after completing the injections, I remain clear of Hep C. There is now every chance I’ll clear the virus permanently from my system. This makes all the planning and sticking to a dreary routine worthwhile. Those twelve months were hard for me. But I proved to myself that I could do whatever was necessary to get that result.

John, NSW

Graphic above by Jim Greene, courtesy of www.google.com/images

opinion

Morbidity and mortality associated with drug dependence, especially drug injecting, constitute major problems for public health. This editorial from The Lancet discusses the benefits of supervised injection facilities.

S

upervised injection facilities (SIFs) are professionally supervised healthcare facilities, where high-risk drug users can use drugs in safe, hygienic conditions. They have been around in Europe for nearly 20 years. But in North America, where public-health interventions for intravenous drug users (IDUs) have been controversial and are heavily politicised, opening of this SIF signifies a radical step forward.

Historically, Europe and North America have diverged in their public-health response to intravenous drug use. In the mid 1980s needle-exchange programmes faced fierce opposition in the USA. By contrast, Europe and Australia quickly adopted them, as did Canada. As a result, they all experienced a reduction in injection-related HIV incidence and prevalence, and no further increase in drug abuse and criminal activity. But despite the overwhelming scientific evidence, the US view was - and in many states still is - opposed to the programmes. The belief is they promote increased drug use.

A 1988 US ban on federal funding of needle-exchange programmes, and the research into their safety and effectiveness, meant that there was a long delay before the programmes got going in the USA. To this day that ban still exists.

A rational public-health response was also hindered by the AIDS epidemic in IDUs in the USA coinciding with a crack cocaine epidemic that generated a lot of public fear about drugs. The violence associated with the drug distribution trade generated a tremendous amount of public anxiety. In that atmosphere it was hard to get rational discussion of measures to reduce HIV infection.

This situation was further compounded by drug use in IDUs being concentrated in ethnic-minority groups, which made the political discussions much more difficult.

Over the years one thing has become clear—that the response to the HIV epidemic among intravenous drug users in North America has become entrenched in law enforcement and incarceration as the major public-health intervention. This fact is most evident in the allocation of expenditures in the US national drug control budget for fiscal year 2004. Of a $12 billion total, more than $7.2 billion (60%) is devoted to drug law enforcement, interdiction, and supply reduction in the USA and abroad.

This figure is predicted to rise to more than 70% in 2005.

The evolution of SIFs is similar to that of needle-exchange programs, since both are surrounded by controversy.

According to the UN’s International Narcotics Control Board, SIFs violate the provisions of the international drug control convention, and countries that allow the operation of SIFs are guilty of facilitating illicit drug trafficking.

The first SIF opened in 1986 in Berne, Switzerland, followed by Germany and the Netherlands in the 1990s, and then Spain. The UK is currently debating whether a pilot project should be set up. SIFs were seen as a pragmatic approach to a persisting drug problem. But despite having a medical rationale, they were often run by community and social workers, and had a history of repeatedly being shut down and reopened. Thus the major limitation of SIFs over the years has been the absence of rigorous scientific evaluation.

However, the SIF that opened in Australia in 2001 as an 18-month scientific trial has demonstrated a decrease in drug-related deaths, and no reported increase in hepatitis B and C infections, which has meant that the SIF continues to operate.

The Vancouver SIF has taken 10 years for its doors to open, following a barrage of political opposition claiming it will encourage increased drug use, public disorder, and conflict with treatment goals. But with an explosive HIV epidemic that remains among the most rapidly spreading in the developed world, it is timely that the Vancouver SIF has opened now.

What will be invaluable is a rigorous evaluation of the Vancouver facility. Eight months since opening, there have already been improvements of public order, a reduction in discarded syringes in the street, and less injecting in public. It is very encouraging to hear that Wood and colleagues have embarked on a prospective cohort study that will provide a scientific evidence base to support a change in drug policy, and potentially make a strong case for not allowing public health to get caught up in politics in the future.

Reprinted with thanks from the The Lancet Infectious Diseases, Volume 4, Number 5, 1 May 2004.

On the other hand, Europe [and Australia] have focused more on harm-reduction strategies, with emphasis on the health and human rights of the individual.

The Hep C Review

Edition 48

March 2005

19

feature

The role of the hepatitis C Clinical Nurse Consultant (CNC) within Royal Prince Alfred’s gastro and liver services is specialised and varied. By Sue Mason and Sinead Sheils.

A

t the Royal Prince Alfred Hospital (RPAH), Sydney, the two HCV Clinical Nurse Consultants share a varied role. They provide expert nursing advice and resources to all staff. They also coordinate and ensure high quality treatment services to patients and their carers, both in hospital and through the outpatient gastro and liver clinics.

Additionally, the CNC liaises closely with community based services such as pathology laboratories, community health services, or indeed with any services used by patients on treatment - such as Centrelink.

All people who seek treatment for their hepatitis C through RPAH will be referred to the CNCs who working closely with a small team of expert nurses, will coordinate treatment preparation, screening process, ongoing monitoring and follow-up visits.

Within this coordination role, the CNC wears many hats including that of educator and case manager. The model of care at RPAH is set up with the CNC providing the primary contact, care, monitoring and support of people on treatment with people seeing their medical specialist at three and six monthly intervals.

The CNC liaises closely with the individual medical specialists on an ongoing basis and coordinates referrals to other health care members as needed.

These referrals may be to services within the hospital system, such as dermatology, ophthalmology, endocrinology, psychiatry, dietetics or social work.

Close links have been developed with some GPs to allow for ‘shared care’ arrangements to be available to people who are unable to travel to the hospital for regular visits, or who want their treatment managed by their GP. It is expected that this shared care arrangement will become more widely available through a current ‘Community Prescriber Pilot’ over the next few months.

Our CNCs also coordinate the clinical drug trials which are frequently carried out at the hospital. These trials are vital to the ongoing improvements in hepatitis C therapies and can offer the most up-to-date treatments before they

20

The Hep C Review

Edition 48

March 2005

Image downloaded with thanks from www.google.com/images

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 Drug prohibition has been an expensive failure, with 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 enormous social and financial costs. These include deaths, 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 sickness, ruined lives, violence, corruption, crime, police 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 enforcement, judicial procedures and imprisonment.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 The Greens’ drugs policy is based on harm minimisation 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 and an understanding that drug use should not be treated 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 as a crime, but as a health and social problem. The 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 demand for drugs should be combated with social and 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 educational programs rather than with criminal sanctions.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 The Greens advocate programs including harm reduction, 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 that is, at reducing the adverse health, social and 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 economic consequences of drug use to the community 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 and to the individual user. This includes creating an 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 environment where health and education programs can be 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 delivered to drug users without fear of criminal sanctions.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 Attacked through the media in the lead up to the recent 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 federal election, the Greens were painted as supporting 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 illicit drug use.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 “I abhor drugs and the death toll of young Australians 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 which drugs cause,” Senator Brown said in response.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 “In my career as a family doctor, I helped treat addicts.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 Then and since I have always advised youngsters to avoid 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 illicit drugs but prohibition has not stopped the toll and 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 hundreds die each year.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 “These ads ... are hateful and mislead voters. Nowhere 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 does our policy advocate legalising hard drugs as the ads 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 claim,” Senator Brown said.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 According to the Alcohol and other Drugs Council of 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 Australia, the Greens are the only party to have a 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 comprehensive alcohol and other drugs policy.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 The Greens’ harm reduction policies also echo opinion 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 from medical and police experts.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 We would call on our mainstream political parties to look 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 at harm minimisation practices in Australia and overseas, 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 which have police and doctors’ backing, to reduce the 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 drug death toll.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 Demand reduction and supply reduction alone will not 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 reduce drug harm. Political parties should not abuse harm 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 minimisation for political points scoring. They are playing 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 with people’s lives.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890

Compiled from Greens Party press releases. Also 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 see article on pg 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 The The Hep Hep CC Review Review Edition Edition 48 48 March March 2005 2005 21 21 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890

feature

actually become standard therapies. The CNC can provide accurate and specific information on which treatment programs may be available to an individual, how they differ and what they may offer.

With waiting times to see medical specialists extending up to three months at times, the CNC is a useful contact point for many individuals either directly, or through their GPs, whilst they are waiting for appointments. CNCs can provide pre/ post test counselling and offer information, support and advice on a range of hepatitis C related matters.

They can recommend lifestyle changes which may improve people’s sense of wellbeing. Additionally they can review blood test results, help with interpretation of these results and, if someone is considering treatment, may order more specific blood tests.

Briefings and discussion can begin about treatment related issues so that people can begin the ‘getting ready for treatment’ process.

Most hospitals in NSW who offer hepatitis C treatment have CNCs available.

At RPAH, they can be contacted by phoning 02 9515 6003

Sinead Sheils and Sue Mason share the CNC role at RPAH.

my story

“I did not know how to write this book. How could the collection of frantic scribbles, sketches in notebooks, the hopes, losses, madness, insights, and blind times be woven together intelligibly?

There were years and years of them. Was it worth strewing the whole conglomerate jigsaw of them across pages?”

In this, the second of two excerpts from her book, Peelings of the Psyche, Mary M. describes the trauma of her hepatitis C diagnosis. This represents one facet of Mary’s heartfelt autobiography her journey into the depths of drug dependency and back.

I

was correctly diagnosed in New Zealand with having the Hepatitis C virus. The Doctor there had been alert enough to match my symptoms to the Hepatitis C virus and counselled me prior to testing my blood for it. All the symptoms I exhibited and was experiencing were associated with this virus in the chronic stages.

My skin felt dirty, itchy and irritated all over my body. No matter how many times I showered still felt filthy. Felt toxic. My gums were bleeding and my mouth was dry no matter how many fluids I ingested. The fatigue levels were horrendous. Even talking drained me for a change instead of the unwilling listeners!

When the Doctor told me the test results I remember grabbing the curtain around the clinic bed in a shocked reflex action. Heard her say it is a communicable disease and she would have to report it.

Regarding treatment with Interferon my mind was made up I wanted no part of it. The thought of being a human guinea pig for this treatment terrified me. Worse was the realisation that if I did access mainstream, orthodox treatment those treating me would be privy to my past history of drug addiction.

Staggered off up the road in a daze. However the evening of the diagnosis, ill and physically depleted, I insisted on going out to a party with a friend. Remember yelling over the music to some guy, “I have Hepatitis C I am ill I might die!” Then laughed somewhat hysterically. Must have been in shock because it seems quite insane now and shades of my drama queen leanings!

The actual impact of the diagnosis really hit home in the following weeks. There was no choice but to face into what was physically wrong with me. Had to start to learn about this virus. What stands out to me now is how fortunate I was to have two parents who cared for me through all this. I did not have to worry about financial matters rent and bills and so forth.

Most of the time being bedridden was the pits I have an active, driven personality. Being holed up in bed, ill and exhausted but with my mind speeding with thoughts and worries was hell on earth. There were freight trains of projections of what might happen to me rattling through my head.

The emaciation of my body had progressed to the extent there were pressure areas on my body. No longer loved being so thin as I used to a hangover from the days of using drugs. In fact I could not bear to see my reflection in the mirror. It was ugly.

Slept sitting up. My engorged liver and abdomen area hurt more if lay down in the bed. Then there were the shooting stabs of pain through my head. They were excruciating and occurred in erratic mode. I dreaded them.

22

The Hep C Review

Edition 48

March 2005

The stigma would rear its head and I could not handle the thought of people knowing my past never mind the current predicament was in. Did however ring the hospital and speak to a registered nurse about my condition.

Insisted he tell me in exact details how one dies from Hepatitis C. Told him I could handle the information. He was reticent to at first but I persevered until he gave in.

The most perturbing part of what he relayed to me was the part about getting jaundiced really yellow coloured at the end. My vanity levels kicked in that part of the information really got to me.

Remember sitting with my parents discussing my funeral plans if I should die from this virus. Of great concern was how to cover up the jaundiced look with makeup anything but let me be seen dead and jaundiced!

One night using the rationale if I am possibly going to die from Hep C might as well eat what I want, manipulated my father into buying me deep fried fish and chips.

Greedily devoured them fully knowing regret would follow! It cost me more ultra nauseous days in bed thought my liver was going to seize up completely.

Then in another flash of brilliance decided why care about my teeth... my gums are a mess anyway. Figured if I look this hideous now might as well complete the monster look. Sugar did not seem to upset my liver noticeably. So munched my way through bags of sweets... I think my teeth are still complaining from that number today!

my story

Being diagnosed with any illness is a bummer a slap in the face and reminder of ones mortality. However being diagnosed with a blood borne virus brings an additional burden with it. It’s called people’s discrimination and their fear of you. And not just the stigma of having infectious blood in your veins but in my case how it was contracted.

The initial relief of being told my diagnosis got followed up by a vast amount of rage and denial. Kept demanding blood re testing until this feeble attempt at denial burnt out. The diagnosis had bought with it the accountability of what I had done and what I had been.

It would have been easier to lie to people who asked me how I got this virus could lie and say it happened because of an infected blood transfusion. Just couldn’t do it because felt genuine sadness for those who had contracted it that way. It would be a cowardly and gross abuse of their suffering. I felt and feel sadness for anyone who contracts a blood borne virus either through risk taking lifestyle or medical error.

So I had to learn to live with the impact of discrimination.

Truth is I got the virus from intravenous drug usage. End of story.

Day after dreary day and night after angst ridden night, racked my brain trying to recall the incident that caused me to contract it.

The Doctor had asked me but I had no answers. It took a long time before three incidents came to my recall with vivid clarity. They were from years ago.

Once I fell on top of some unknown person’s syringe and it pierced right through my hand. I just yanked it out and threw it away. And the second incident my partner at that time, had a shot and fell asleep on the bed. I came home jumped into bed and got a needle stick injury.

Third incident was hanging out for a shot and hooked up with a guy who was going to score at some person’s place.

As was hanging out badly was sick and had to go to the toilet. By the time I got back to the lounge room everyone had taken their shot.

My hands were tremulous as reached for my syringe and somehow ended up spilling all the syringes on the floor.

Couldn’t figure out which was mine and then I didn’t care just chose one and had a shot. The need for instant relief overrode any caution.

Undoubtedly there are other incidents and scenarios where I was so drug addled cannot recall my risk taking behaviour. Am very aware could have gotten worse than the Hep C virus more medical complications could have occurred.

Our third and final excerpt from Peelings of the Psyche, The Hep C and Me, will be published in the next edition of The Hep C Review.

Mary’s book can be ordered by phoning her on 0408 257 901. It costs $18 including postage.

Above image by ‘Mary’, taken with thanks from Peelings of the Psyche.

The Hep C Review

Edition 48

March 2005

23

feature

Over 5 years ago, US-based, Lucinda Porter, wrote an information pamphlet on herbs and hepatitis C Interest in herbs continues to be on the rise and since more information is available, it became clear

I

have reformatted Herbs and Hepatitis C into a threepart series - which can be read in its entirety on the website, www.hcvadvocate.org. This series is not meant to be the final word on the issue of herbs and I hope you will use it as a tool towards gaining more insight and knowledge about the world of herbs. This information is not meant to be used for medical care. Always talk to your primary health provider before using herbs.

The use of herbs for medicinal purposes has a long and interesting history. The origins of some modern medications are actually plants, such as aspirin from white willow bark, digitalis from foxglove, morphine from poppies and warfarin (Coumadin) from sweet clover.

Many cultures use indigenous plants for healing purposes.

The use of herbs, however, is controversial in contemporary western medicine due to the lack of evidence-based research to support safety and efficacy.

Couple this with the potential harm these substances can inflict and it is easy to see why physicians are reluctant to endorse herb use. Some people are interested in alternative methods to use with or instead of the treatment their physicians have prescribed.

This is particularly true for patients living with chronic hepatitis C virus (HCV). Although huge progress has been made in the HCV treatment arena, current antiviral therapy has many side effects and is not always effective.

Add these elements to the symptoms some people experience from HCV and it is no wonder that herbs seem attractive.

24 24

The TheHep HepCCReview Review

Edition Edition48 48 March March2005 2005

Although herbs and other supplements may seem appealing, a number of herbs can cause harm.

Some herbs are known to have potentially carcinogenic properties and to cause neurological damage. There are herbs that can be particularly harmful to the liver and can cause damage and death. It is because of the potential for hepatotoxicity (poisoning of the liver) that HCV patients are advised to avoid herbs or to use them cautiously.

The US Food and Drug Administration (FDA) is the federal agency responsible for drug and food safety.

Drugs undergo years of rigorous testing on animals and humans before the FDA allows them to be marketed.

Herbs and supplements, on the other hand, are considered to be dietary supplements.

This means that they are regulated by a different set of standards, as set out in the Dietary Supplement Health and Education Act of 1994 (DSHEA). Under this act, it is the manufacturer that ensures the safety of the dietary supplement. In general, the supplement manufacturers do not need FDA approval and do not need to register their product. They are required, however, to label the supplement in a truthful manner.

The point at which the FDA may become involved with herbs is after marketing. The FDA may monitor product labelling, information, and safety.

feature

C. that it was time to update Herbs and Hepatitis C.

Adverse event reporting is voluntary. Whether the FDA should regulate supplements is a hotly debated issue. The FDA has been criticized both for regulating and underregulating dietary supplements. For a variety of reasons, the FDA’s involvement with herb use has been minimal. To date, the notable exception to this is the sale of dietary supplements containing ephedrine alkaloids. Ephedra, also called Ma Huang, is one of the plants that are a source of ephedrine alkaloids. Its use has been associated with an increase in blood pressure, a condition which will increase the risk of heart attack, stroke, and death.

There is very little independent research involving the use of herbs. The gold standard randomised, double blind placebo controlled studies are few in the area of botanical remedies, let alone the use of herbs and HCV. In 1991, the US Congress established the Office of Alternative Medicine (OAM) within the National Institutes of Health (NIH).

In 1998 The National Centre for Complementary and Alternative Medicine (NCCAM) became a new centre of the NIH. Responding to the need for more research concerning the safety and efficacy of herbs and supplements, NCCAM and the NIH Office of Dietary Supplements established the first Dietary Supplements Research Centres with an emphasis on botanicals. The specific subject of herbs and viral hepatitis was included in the Complementary and Alternative Medicine in Chronic Liver Disease conference in 1999 and a few clinical trials are being conducted in this area.

Unfortunately funding is limited and evidence-based data about herbs and HCV is largely unavailable.

The insufficiency of independent research doesn’t mean there is no value in herbs.

Herbs have made a significant contribution to medicine.

Herbal practice has been around for centuries and has produced some sound observations. Indigenous practitioners relied on botanicals for medicine. In these modern times it is common for people to self-treat a mild sunburn with aloe vera, a mild stomach ache with ginger, or a mild cold with peppermint or chamomile tea.

Generally these are assumed to be safe alternatives.

However, the use of herbs for treatment of more serious conditions such as HCV is more complicated and raises a number of questions. For example, when choosing an herb, which part of the plant is used, when is it harvested, and how is it processed? Botanicals are not made in a lab setting. This means that the consistency of the product is at risk. Is the herbal product safe, which brands are the best, and what is the recommended dose? Next month’s column will attempt to answer some of these questions and will provide some tools that can be used towards making informed choices.

Above image downloaded with thanks from www.google.com/images

Lucinda Porter is a Registered Nurse and regular writer and contributor to the www.hcvadvocate.org website and HCV Advocate Newsletter.

Reprinted with thanks from the HCV Advocate Newsletter, May 2004. Vol 7, Ed 5.

The Hep C Review

Edition 48

March 2005

25

26

The Hep C Review

Edition 48

March 2005

The Hep C Review

Edition 48

March 2005

Hep C Review prevention poster, March 2005. Graphics by Tim Baxter. Text reprinted with thanks from Safer Injecting by AIVL, Feb 2003.

27

feature

You’ve decided that you want to get fit and healthy but how can you make sure you stay the course and get the results you’re after? Hazel Spokes offers advice.

I

f one of your new year’s resolutions was to get fit and healthy, you’re not alone. But how can we make sure we stay the course and get the results we’re after?

Of course, you don’t have to join a gym. And to be frank, techno music at your 6.30am spin class isn’t everyone’s cup of tea.

One approach is to put your money where your mouth is and join a gym. A quick ring-around confirms that there are plenty of special offers to entice the reluctant exerciser.

One company has ‘no joining fee’, while another offers a ‘pay for three months and get another three for free’ deal.

‘For some people going to the gym will be a great way to get active,’ says Tony Stubbs, the Heart Foundation’s NSW Physical Activity Program Manager. ‘Others might prefer walking or swimming or event team sports.’

Some of us may have even received a gym membership as a Christmas gift. Well, let’s face it, nothing says: ‘I love you, but please get your fat butt into gear’, better than that.

But how do you make sure you’re not one of those who loses interest after January’s initial rush? The financial commitment to a gym might be enough of an incentive to begin with. But once you get used to spending that amount each month your motivation can wane.

28

The Hep C Review

Edition 48

March 2005

Whatever we choose, we all find it harder to stick to our new year’s resolutions as the months go on. So what’s the key to staying active?

The Australian Institute of Sport has experience in coaching and motivating the nation’s top athletes. Their advice is to be clear about what your ‘big picture goal’ is.

promotion

So the first step is to know what you want to achieve.

‘Make sure you know what you really want to get out of it - lose five kilograms, drop a few clothes sizes, increase overall fitness level, et cetera,’ says Fitness First’s Nic Monteforte.

The second step is to break it down into specific, positive goals.

‘If you say something like “I want to walk three times a week”, then you are well on your way,’ says Dr Michael Martin from the AIS. Moreover, he adds, ‘if you tie your goal to an emotional reason, such as “to help me enjoy my play time with the kids”, then success is just about assured.’

Thirdly, you’ll need to work out how you are going to build exercise into your daily routine.

HEPATITIS C..

HOW WILL THE MEDIA COVER IT?

‘Be realistic in the goals and expectations you set for yourself to avoid disappointment,’ says personal trainer Rob Hale.

For some this might be taking their 30 minutes of daily moderate activity in bite-sized chunks of 10 minutes throughout the day. For others, it could involve planning a workout schedule each week with a reward/penalty system to keep them on track.

More Australians have been diagnosed with hepatitis C than any other infectious disease over the past decade.

An estimated 250,000 Australians are now infected with hepatitis C, with up to 16,000 new infections occurring each year.

And hopefully, somewhere along the line, you’ll have fun too.

The impact of this epidemic will have major implications for the Australian healthcare system over the next decade and beyond. The personal and social costs are already widely felt.

Hazel Spokes is a journalist who has written columns for 9 to 5 magazine, ABC’s Fly Spray as well as content and features for ABC Kids Online.

Abridged with thanks from ABC Radio Health Matters http://www.abc.net.au/health/thepulse/ s1284539.htm

How the media covers this epidemic directly affects decision making and policy outcomes in the health arena, and almost certainly has an effect on how people with the virus understand and approach their future healthcare choices.

Media workers are urged to familiarise themselves with the AHC’s new Media Centre. This is also a great ‘short answer’ resource for people, particularly the public, looking for info on hepatitis C.

Australian Hepatitis Council p 02 6232 4257 e media@hepatitisaustralia.com w www.hepatitisaustralia.com/media

Image downloaded with thanks from www.google.com/images

The Hep C Review

Edition 48

March 2005

29

feature

The Kings Cross Medically Supervised Injecting Centre has been in operation for nearly four years. M In the Eye of the Needle, Dr Ingrid van Beek’s recently published book that provides a personal acco provide a controversial service for clients with little political or public clout.

E

arly one Sunday evening in May 2001, a young Sydney labourer strolled through a nondescript shopfront in the sleazy heart of Sydney’s Kings Cross, and made medical history. The 19 year old man became the first client of the New South Wales government funded Medically Supervised Injecting Centre, which had quietly opened its doors for the first time about an hour earlier. It had done this without fanfare, hoping to avoid media harassment of clients. Newspaper photographers who had staked out the premises from a hotel opposite for the previous fortnight were oblivious, apparently because of a rugby league match on television.

30 30

The The Hep Hep C C Review Review

Edition Edition 48 48

March March 2005 2005

The centre, a first for the English speaking world, had a long and painful gestation involving protracted legal and political battles. Opponents ranged from the Vatican to a local business organisation and the United Nations International Narcotics Control Board.

Some of the highs and lows of its first 30 months are revealed in In the Eye of the Needle, by the centre’s medical director, Dr Ingrid van Beek, a public health and addiction medicine physician.

The centre was initially established as an 18 month trial, licensed jointly by the New South Wales police and health departments and run by a branch of the Uniting Church.

Its operations have since been extended until October 2007.

feature

Melissa Sweet reviews unt of the struggle to

Unlike some centres in Europe, it was specifically designed to have a clinical atmosphere, to be more like a hospital emergency department than a drop in centre. Dr van Beek says a centre that has subsequently opened in Vancouver has also adopted the clinical model. “I hoped to send the message that every time IDUs [intravenous drug users] put a needle in their arm and inject a drug, they are taking their life into their hands such that a high tech, clinical set up with staff equipped to resuscitate medical emergencies is required to keep them alive,” she says. “By doing this, I hope that over time other unsupervised injecting environments will become increasingly less acceptable to the client base.”

The result is a book which is more conversational than literary, and neither a public health text nor a tell-all exposé. Rather, Dr van Beek has provided a personal account of the struggles to provide such a controversial service for clients who wield little political or public clout.

“It was written from the bunker when we were under siege,” she explains.

In its first 18 months the centre registered 3818 injecting drug users, accommodated over 50 000 injecting episodes on the premises, and provided almost 1400 referrals into treatment and care. Staff also managed 429 overdoses without fatality, including 329 heroin, 80 cocaine, and 20 temazepam or other benzodiazepine overdoses.

However, the book offers many entertaining vignettes, including a visit by Winky, a rabbit living in the backpack of a homeless female client, and the security circus that surrounded Princess Anne’s visit to Kings Cross police station to learn about the centre.

British doctors have cited the centre’s success in reaching the most marginalised drug users to argue against the Home Office’s decision to support such services only if they are part of a heroin prescribing programme.

Prescribed heroin is most appropriate for long term addicts who have not responded to traditional treatment, whereas medically supervised injecting centres target the socially excluded and homeless, according to a BMJ article last year ( BMJ 2004;328: 100-2).

When a publishing industry consultant approached Dr van Beek about doing the book, she agreed on condition that she did not have to write it. Instead, over the next few years she spoke about a quarter of a million words into a dictaphone, a process that at first she hated. “But by the end, the dictaphone had become almost like my second friend,” Dr van Beek said in an interview with the BMJ. “I found it quite cathartic. I laughed and I cried into that machine.”

In one entry, she writes: “Looking back over all the time that I’ve been involved with this injecting centre I cannot help feeling that it’s been very arduous. Whenever things could have been either hard or easy, they always seem to have turned out to be hard.”

“There seemed to be quite a few of these tall, grey-suited men with wraparound sunglasses poking about around the garbage bins and so on,” says Dr van Beek.

“Even one of the street sweepers seemed to be fiddling with something in his ear, apparently speaking without anyone being within earshot. But then quite a few people do that in Kings Cross.”

Dr van Beek also details the clinical and policy lessons, including the dangers to staff of needlestick injuries and the frustration of dealing with bureaucrats and politicians who are more focused on avoiding adverse media coverage than clients’ needs.

The book is dedicated to Dr van Beek’s father, a member of the Dutch Resistance during the Nazi occupation of Holland before migrating to Australia in 1950. Van Beek credits him with inspiring her sense of social justice.

Melissa Sweet is a medical journalist who writes for the Sydney Morning Herald.

Her review is abridged with thanks from the British Medical Journal, 1 Jan 05.

Image courtesy of the Sydney MSIC.

The Hep C Review

Edition 48

March 2005

31

research update Oestrogen and fibrosis progression

Retinopathy rare with interferon therapy

France - It is well known that female sex is associated with less aggressive HCV-related liver disease progression, and many experts believe oestrogen may have an antifibrotic effect.

UK - The low incidence of retinopathy (retina damage) with pegylated interferon treatment of hepatitis C infection does not justify routine screening for retinopathy, UK researchers report in the December issue of the British Journal of Ophthalmology*.

In the December 2004 issue of Hepatology*, P. Lebray and colleagues reported on a study looking at the influence of pregnancy history, use of oral contraceptives, menopause, and hormone replacement therapy (HRT) - all of which affect oestrogen levels - on liver fibrosis in women with hepatitis C. Analysing self-reported survey data from 201 women, the researchers found that fibrosis progression was greater in postmenopausal women (whose ovaries have stopped producing oestrogen) and those who had never borne children, while use of oral contraceptives did not have an effect.

Among the postmenopausal women, the rate of fibrosis progression was lower in those using HRT (which replaces oestrogen and/or progesterone), and in fact was similar to the rate in premenopausal women.

The authors concluded that menopause was associated with accelerated liver disease progression, which might be prevented by using HRT.

Nevertheless, Dr Fiona Cuthbertson from St. James University Hospital, Leeds, told Reuters Health that “it is important that physicians and patients are aware of the potential side effects of treatment and ensure that any reports of new symptoms are taken seriously.”

Dr Cuthbertson and colleagues examined the incidence and severity of retinopathy among 25 people whose hepatitis C infection was treated with ribavirin and low dose (1.5 g/kg/week) pegylated interferon.

After three months, four of the people had evidence of retinopathy, and all but one also had hypertension or diabetes. None had any visual symptoms.

Moreover, at six months, retinopathy had resolved despite continued treatment in three cases. In the remaining person, retinopathy resolved by nine months after therapy was initiated.

However, the large Women’s Health Initiative study showed that the risks of HRT (including increased rates of breast cancer, heart attack, and strokes) outweigh its benefits for many women.

“This study confirms previous reports that retinopathy is a temporary and asymptomatic complication of interferon therapy,” the investigators conclude. “As there are no visual symptoms or sequelae, we feel that routine screening for interferon-associated retinopathy is not justified.”

* Di Martino V. et al. Progression of liver fibrosis in women infected with hepatitis C: long-term benefit of oestrogen exposure. Hepatology. 40(6):1426-33, 2004 Dec.

* Cuthbertson FM, et al. Is screening for interferon retinopathy in hepatitis C justified?. Brit J Ophthalmology.

88(12):1518-20, 2004 Dec.

Abridged with thanks from hcvadvocate.org

Abridged with thanks from a Reuters news item via www.medscape.com

123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 To clarify any medical terminology, In our readership surveys, many Individual articles may sometimes 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 or for further information, please people say they want to see more appear to contradict current 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 speak to your doctor or specialist, or highly detailed information on knowledge. Such studies are part of 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 phone the NSW Hep C Helpline on hepatitis C. The research update scientific debate and it is the collective 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 9332 1599 (Sydney callers) pages scattered through the results of several similar studies that 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 1800 803 990 (other NSW callers). magazine attempt to meet this need. determines current knowledge.

123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890 123456789012345678901234567890121234567890123456789012345678901212345678901234567890123456789012123456789012345678901234567890

32

The Hep C Review

Edition 48

March 2005

research update Blood test may reduce need for liver biopsy

Dietary intake, metabolism & hepatitis C study

USA - Results from people with hepatitis C undergoing treatment at a single clinic suggest that a blood test, the AST/platelet ratio (APRI), is a good predictor of fibrosis in chronic HCV. It may be used to reduce the number of liver biopsies, according to lead investigator, Dr Ned Snyder, Professor of Medicine at the University of Texas Medical Branch in Galveston.

Australia - Hepatitis C is rapidly becoming a major health issue in Australia, and is one of the major causes of liver disease around the world. There are currently no published quantitative data on dietary intake in hepatitis C, and data on resting energy expenditure in chronic hepatitis is limited.

Dr Snyder presented the study results at the 69th annual scientific meeting of the American College of Gastroenterology (ACG)*.

“Liver biopsies are invasive and expensive, so ideally a blood test that could serve as a surrogate for biopsy — a test that could distinguish mild fibrosis from significant fibrosis in chronic HCV —would be a clinical advance,” he told Medscape.

Ninety men and 38 women with known HCV infection who were undergoing liver biopsy were enrolled in the study. Blood samples were assayed for APRI and the results were compared with biopsy results.

“APRI predicted mild fibrosis in 27 of 29 people identified with mild fibrosis at biopsy,” Dr Snyder said. Likewise, APRI “predicted 44 of 46 people identified with severe fibrosis at biopsy.”

“The only reason to initiate treatment in HCV is the presence of progressive disease,” Dr Snyder said. “But some people are understandably reluctant to undergo biopsy, so a blood test could improve our management of these people.”

He noted that “currently if a person has mild fibrosis on biopsy, he/she is followed and biopsy is repeated at three to four years. With a blood test, if the results are low, one could wait a year and do another test.”

Dr Rowen Zetterman, a professor of internal medicine at the University of Nebraska Medical Centre in Omaha and a former president of the ACG, told Medscape that Dr Snyder’s results are encouraging.

“Do we need a non-invasive way to assess HCV? The answer is yes. Is a blood test an easy alternative? Again, the answer is yes, so this approach is very appealing,” said Dr Zetterman, who was not involved in the study.

“But we have to confirm the efficacy of this test by studies in other institutions,” Dr Zetterman pointed out.

“The test is about 93% accurate, which still leaves a 7% error rate.” He added that liver biopsy can also miss disease, “so while biopsy is the gold standard, it is not infallible.”

* ACG 69th Annual Scientific Meeting: Abstract 5.

Presented Nov. 1, 2004.

Abridged from a research review by Dr Gary Vogin published on www.medscape.com

The aim of this study* was to investigate the nutritional intake and resting energy expenditure (REE) in people living with hepatitis C, and assess any relationship between these factors and the disease biomarkers of hepatitis C. Forty-seven people were recruited through The Hep C Review magazine and the Albion Street Centre Clinic.

Blood pressure and fasting blood samples were taken, and REE was measured using an open-circuit indirect calorimeter.

Medical history, diet history and a food frequency checklist were completed by interview. Dietary data was analysed using FoodWorks analytical software. Physical activity was assessed using the validated Baecke Physical Activity Questionnaire. Fatigue and symptom questionnaires were self-administered. Body composition was measured using anthropometry and multifrequency bioelectrical impedance analysis (BIA).

Statistical analysis was undertaken using SPSS analysis software. Pearson’s correlation coefficient and chi-square analysis were used to identify relationships between variables.

Ten of the 47 people who participated in the study were vegetarian. Zinc, calcium, magnesium, vitamin A and iron were the five main dietary deficiencies identified. The measured REE was 8% lower than the predicted REE in 75% of people, and 22% lower when compared with a control group.

Thirty-nine of 44 people (89%) experienced fatigue, and 18 of 23 people (78%) experienced other symptoms such as nausea. No significant relationship was found between alcohol intake and elevated ALT. The nutritional deficiencies apparent in this study could be due to several factors including the high proportion of vegetarians in the cohort, the incidence of symptoms, impaired taste perception and taste alteration and selfreport bias.

Our REE results were not consistent with the limited literature available which suggests that REE may be elevated in hepatitis C (Piche et al, 2000). Fatigue was very common in the group. This was consistent with previous studies, but may also be influenced by diet, physical activity levels and psychological factors.

* Giudice C. Dietary intake, metabolism & hepatitis C study (research project report), Albion Street Centre, Sydney, Australia.

Abridged from the author’s project report.

The Hep C Review

Edition 48

March 2005

33

research update Heavy metals in Ayurvedic herbs USA - Ayurvedic medicine is ancient and quite popular, especially in the Indian community and in India itself. But disturbing research from the United States suggests that buyers better be wary of Ayurvedic herbs. They may contain more than you paid for.

Following several case reports, including one from Australia, of lead and other heavy metal poisoning from Ayurvedic herbs, a group in Boston went to about 30 outlets selling complementary medicines and purchased about 70 products made in either India or Pakistan.

They were then tested in a reputable laboratory and about 20 per cent of them turned out to have significant amounts of lead, mercury or arsenic, sometimes at very high levels.

The sorts of problems that could arise from toxicity include seizures, high blood pressure, kidney damage and developmental delay in children.

The reasons for the heavy metals could be contamination for example from groundwater - or indeed the addition might be intentional as Ayurvedic medical texts do apparently sometimes argue that heavy metals are good for you.

Either way, be careful of what you’re sticking in your tummy herbally. Unfortunately you can’t necessarily rely on regulators making sure they are safe.

*Saper RB et al, Heavy Metal Content of Ayurvedic Herbal Medicine Products. Journal of the American Medical Association 2004, vol 292, pp 2868-2873.

Abridged from ABC Radio’s Health Minutes with Norman Swan.

W

hen I first heard I had hepatitis C, I was told to ignore the fact and continue to live a ‘normal’ life. Now that was not quite what I had expected. I had gone to a doctor because I was finding it very difficult to do just that ... live a ‘normal’ life.

My ‘normal’ life consisted of visiting doctor after doctor, trying desperately to find out what was wrong with me.

Hep C was not on the list of considerations. The only advice I was given was to have the treatment for hep C, and if my ailments do not disappear then it must be something else. (My liver function tests have always been normal).

What is wrong with me? Well I have an over active auto immune system, which has left me living in almost total isolation. I react to just about everything we take for granted in our lives. Toothpaste, shampoos, soaps, dish washing and laundry detergents, petrochemicals, sprays, certain foods, medicines ... the list is endless. All these things and more float in the air around us. We are literally living in a cloud of chemicals as well as eating them.

I’m told I might have lupus, maybe MS or it could be this or it could be that ... not sure I’m told. I do have fibromyalgia, vascularitis and malignant melanomas, that is a fact, and because of the malignant melanomas I can not be treated for hep C. Why ... the cancer would spread rapidly. So I have been left to stand alone and try and figure it all out.

Upon my research I came across very interesting information on hep C and it described me down to a “T”.

I printed all the information out and took it to my local GP. He in turn sent me back to the gastroenterologist. I looked at him very meaningfully and asked point blank... “Is all that is wrong with me anything to do with hep C. I have with me information that tells me it is.” He looked back at me carefully and said “yes.”

“So the numbness in my hands and feet, the pain I suffer in my legs, feet, arms and hands, my stomach complaints, headaches, back pain, mental confusion and forgetfulness, and not forgetting my over active immune system is all part of having Hep C?”

34

The Hep C Review

Edition 48

March 2005

my story

“It can be, yes. Hep C is able to mimic many diseases. But (and there is always a but) you are very fortunate because your liver is not involved.”

So there you have it ... I’m very fortunate. I was so angry I had not been told. I had spent so much time, money and emotional trauma over something I should have been told a long time ago.

Here I am living a social death alone, and I’m fortunate. I can’t share much of my woe with anybody. When I did, many years ago, I found myself shunned and realised I knew all the wrong people. (Funny how the phone stops ringing.) So I keep most of it to myself, the hep C part, which is mainly the whole part. When I do venture out into the big world it takes days to get over my effort. Why bother I ask myself? My answer is ... it is for my sanity.

I am unable to attend any hep C support groups because the nearest one is two hundred odd kilometres away. The local hospital is still up to its old tricks of discrimination as well.

And I’m left wondering where will it all end.

So if you see yourself in this story do not despair, take up gardening, find a friend in a pet, return to nature, become creative, watch the madness of the world from a distance and consider yourself fortunate. Somehow there is quite a bit of truth in the word fortunate, although I’m still trying to convince myself of this.

I most certainly hope I have helped someone in telling a brief part of my story.

Kathleen, NSW Ps. The info that I found was on the web page http://www.janis7hepc.com/Symptoms.htm

Image downloaded with thanks from www.google.com/images

The Hep C Review

Edition 48

March 2005

35

feature

The Beckley Foundation provides an interesting review of Portugal’s recent moves to decriminalise p

Portugal had, and continues to have, a serious heroin problem, with rates of use amongst the highest in Europe at six to 10 cases per 1000 adults. Portugal has, paradoxically, a relatively low historic prevalence of the use of other drugs such as cannabis, ecstasy or cocaine.

The number of HIV infections attributable to drug use in Portugal rose from 73 in 1991 to 505 in 1998. During the same period, drug related deaths rose threefold. These rises brought the public health risks of heroin injection to the forefront of the drug policy debate at that time.

In 1998, the Portuguese government invited a panel of experts, including leading academics and medical professionals, to propose a new national drugs strategy. The report attempted to produce an overall strategy based on scientific evidence and empirical experience. In a framework based on prevention, harm reduction and the reintegration of drug users into society, the report proposed a new long-term strategy and action plan, the decriminalisation of personal drug use and possession, and consideration of treatment as an alternative to prison.

As the reforms were enacted in July 2001, opposition to the policy was encapsulated in claims from conservative politicians that Portugal now offered “sun, beaches and any drug you like.” (The Guardian, 20 July 2001). Indeed, these fears of ‘drug tourism’ were initially shared by the embassies of several other European countries, but it quickly became clear that the flood of heroin addicts from around Europe was not going to materialise.

On July 1 2001, new laws took effect, decriminalising drug use, possession and acquisition for both the ‘casual’ user and addict.

Since the implementation of the new legal framework, drug users apprehended by police for personal drug use or possession are referred within 72 hours to one of twenty local Commissions for the Dissuasion of Drug Use (CDT’s), covering the entire country.

Police no longer have the power to arrest users, but they can dispose of any drugs found, take the offenders name and address, and forward this information to the CDT. The CDTs are three-member panels made up of social workers, legal advisors and medical professionals, and are supported by a team of technical experts. They receive referrals from the police, and assess each case according to:

• •

the type of drug

• •

whether the use was in public or private

the level of drug use (whether an offender is an addict, an habitual or an occasional user)

the economic circumstances of the offender.

They then decide on the appropriate sanction to apply to the individual. Sanctions can include community service, fines, suspension of professional licences and banning from designated places. The CDT also recommends what they consider to be appropriate treatment or education for the offender. In the initial phase, mid to late 2001, the commissions processed almost 2,400 cases nationwide. Of these, 93 per cent were suspended (the panel recommended treatment or education for the offender), 4 per cent were absolved (the panel considered the individual not guilty), and 3 per cent incurred punitive measures, such as fines (EMCDDA 2002).

Four years on, the attitude of the present government towards the changes established by its predecessor is ambivalent. Although initially threatening to abandon the policy, it has instead continued to implement the new system. There are questions, however, as to whether the government support for the CDTs, in terms of resources and political backing, is as strong as under the last administration.

In the light of the present administration’s desire to cut government expenditure – and somewhat gloomy predictions for Portugal’s budget deficit and economic growth – financial resources assigned to drug issues seem unlikely to increase during the lifetime of the present government, with elections next due in 2006.

In addition, developments in government drug policy are likely to be affected by the attitude adopted by the conservative Partido Popular (PP), which forms a small – but potentially decisive – part of the governing coalition.

36

The Hep C Review

Edition 48

March 2005

Image downloaded with thanks from www.google.com/images

feature

personal drug use.

There remains, therefore, considerable uncertainty over whether the Commissions will continue to have the resources and support to continue their work in the coming years. Any decision on this is unlikely to be based on a comprehensive analysis of the costs and benefits of this radical new approach.

However, experience of the initiative so far does allow some conclusions to be drawn:

•

The Portuguese authorities have been successful in implementing a significant national programme of change in the way they deal with drug offenders without major delays or administrative problems.

•

It has been possible for the police, health and social services to work together to prioritise the provision of help to drug users over punishment.

•

The new system has led to an improvement in the ability of the authorities to identify and intervene early in a young person’s drug problem, and to deal with cases more quickly and cheaply than the courts were able to.

•

Tens of thousands of drug users have been diverted from the criminal justice system in Portugal over the last 3 years, producing significant resource savings in the court and prison systems.

•

The introduction of this new approach has not led to a significant increase in drug use in Portugal, or of drug users moving to Portugal because of the perceived lower risk of imprisonment.

Ultimately, the success or otherwise of this change of policy should be measured against the objectives of whether more actual (and potential) drug addicts are helped to reintegrate into society, and whether this more liberal approach has led to an overall increase in drug use. At this stage, the general indications are positive, but clear data does not yet exist on which to draw a firm conclusion.

This abridged Beckley Foundation briefing paper reprinted from www.internationaldrugpolicy.net/reports/ Beckley%20BP%206.pdf via Daily Dose. ©DrugScope and The Beckley Foundation, 2004.

I

t’s official! The Australian Hepatitis Council (AHC), together with the state and territory Hepatitis Councils, are planning the first National Hepatitis C Awareness Week. The theme of year’s event, from 23-27th May, is to promote awareness of hepatitis C treatment among people with chronic hepatitis C and general practitioners.

In recent years the treatment of hepatitis C has become increasingly effective, with pegylated interferon and ribavirin combination therapy providing up to 80% clearance rates in some cases. However, currently only about 2000 people a year access this treatment.

To head up the campaign, a national coordinating committee (NAWCC) has been established to plan the national aspects of the awareness week - which will include:

•

resources targeting people with chronic hepatitis C (posters / postcards)

•

a national website (including an events calendar) and an online forum

•

national launch of the week

•

a national media strategy

In addition to the national campaign, Hepatitis Councils in most states and territories have formed organising committees with partner organisations to plan awarenessraising events at a local level.

The NSW Organising Committee will partner with local Area Health Service staff to implement the NSW arm to the Treatment Awareness Campaign. At this stage, suggested activities and events for the week include a local launch, information sessions, submitting articles and personal stories to various print media, and inviting health and community partners to be involved in displays, activities and distributing resources in their local area.

This is sure to be an exciting and successful week in raising the awareness of available hepatitis C treatments.

Please stay tuned for upcoming details of displays and events in your local area, and for the June issue of The Hep C Review which will be focusing on the campaign and on hepatitis C treatment.

If you can offer any assistance with the campaign, or would like more information, please contact Holly at the Hepatitis C Council of NSW on 9332 1853 or email hbeasley@hepatitisc.org.au

HCCNSW

The Hep C Review

Edition 48

March 2005

37

promotion

my story

A Little Kindness When the heart sighs and whispers “come near”, Do we stop to listen in the hope to hear, Or do we ignore the quiet sounds And continue our constant rush a rounds?

What is it we must continually prove?

That all is well and running smooth?

But what of the secret carried for so long;

Hepatitis C and Your Health Care

A burden buried deep, dug in by a prong; One of many pointed divisions from social life, Producing nothing but unwanted strife.

So the heart sighs and whispers “come near”, Yet nobody listens because of their fear.

If we stopped ‘quietly, listening to sounds of grief, Would we hold the hour or would time be brief?

Could we cope with an opening floodgate, Or is it not written on our path of Fate?

Behold... a little kindness opened the gate,

Do you have hepatitis C? Are you taking treatment for hepatitis C, or thinking about taking treatments?

We would like you to help us with a research project about how people who take hepatitis C treatment, or who are thinking about treatment, discuss this with their doctors.

The project is run by the National Centre in HIV Social Research at the University of New South Wales.

It will involve a conversation-style interview lasting about half an hour, either at a place that is convenient for you, or on the phone. All information that you will give us will be strictly confidential.

Something unheard of, yet it did break, And out it came in a flood of aching tears, A burden held for many, many years.

The silent whispers of a broken heart Fell in droplets upon society’s hearth Quenching the heat of its constant scorn, A little kindness ... how hard is it to be worn?

The heart sighs and whispers “come near”, Dress me in kindness and help me to bear, An illness to great to be spoken about, Causing pointless fear and unnecessary doubt.

Where do you find kindness in the world of today?

People are full of woe and their souls frayed.

Maybe if we took time to listen to our heart, Surely that might be the right place to start’ When you hear a heart whispering “come near”,

We will pay you $30 for your travel expenses and your time.

Be bold, stop, listen and take time to shed a tear,

We hope that this project will make it possible to help people with hepatitis C make decisions about treatment.

Healing souls from battlefields of similar binds.

If you are interested in this project and want to know more, please contact Henrike Körner, (02) 9385 6412, or email h.korner@unsw.edu.au.

Washing away the sighs of troubled minds, And so it is, my heart still whispers “come near , But in my reality there is nobody to hear, I live alone with solitude in a far away place, Dressed in thoughtfulness, kindness etched on my face.

© Kathleen Leada Skinner, Nov. 2004

38

The Hep C Review

Edition 48

March 2005

a council profile

Introducing Grant Malpas, Coordinator: Hep C Helpline How did you come to be at the Council?

I had worked in collaboration with the Hepatitis C Council staff on several occasions and I was very impressed with the professionalism and friendliness of the people. I had also been wanting to specialise more in hepatitis C so I basically set my sights on working for the Council and thankfully the right opportunity came along.

What’s your background?

I am a kiwi lad from the quietly cosmopolitan city of Wellington and I’ve lived in Sydney for over 4 years. My work history has involved health promotion, social work and counselling with a focus on hepatitis, sexual health and HIV/AIDS. I’ve also worked in the youth welfare sector and at New Zealand’s national Quitline.

We are currently looking for new Volunteers to join the Helpline and are planning the training program for new Helpline workers.

What are your interests outside work?

I enjoy dreaming my time away to music, a DVD, the newspaper, and some good old fashioned home cooking.

I’m a big fan of chilling out at home with my partner and friends. I also like to exercise on the treadmill, play tennis and go for weekend bike rides around the cafes.

What’s your favourite movies?

I tend to like anything with Johnny Depp in it.

Any wise thoughts?

What are you working on currently?

An ongoing part of my role is to support and train the fantastic team of Volunteers that work on the Hep C Helpline. Without them we wouldn’t have a Helpline, so supporting them is an essential and enjoyable focus of the job.

Be true to yourself.

The NSW Hep C Helpline provides information, resources and support to people affected by hepatitis C, including community workers and health care workers. Phone 9332 1599 (Sydney callers) or 1800 803 1599 (other NSW callers).

The Hep C Review

Edition 48

March 2005

39

research update Increased serum caspase activity marks HCV associated liver damage Germany - In people with chronic hepatitis C virus (HCV) infection, detection of apoptotic caspase activation in blood is a sensitive method of detecting early HCVassociated liver damage, especially in people with normal aminotransferase levels, researchers in Germany report in the November issue of Hepatology*.

Liver damage is brought about by hepatocyte apoptosis, which in turn is brought about by intracellular cysteine proteases or “caspases”, Dr Klaus Schulze-Osthoff from the University of Dusseldorf noted in comments to Reuters Health.

Having previously shown that these caspases are strongly activated in liver biopsies from people with HCV, the investigators looked for caspase activation in blood samples from 59 people with chronic HCV infection and seven healthy controls.

Using a new test (an ELISA that detects the liver-specific caspase-cleaved substrate of cytokeratin-18), they were able to show that blood from people with HCV contains “considerably higher” levels of caspase activity than healthy controls.

“While 27% of those with hepatitis C showed normal aminotransferase levels despite inflammatory and fibrotic liver damage, more than 50% of those people exhibited already elevated serum caspase activity,” they report.

Moreover, liver biopsy findings from people with normal aminotransferase levels showed that elevated caspase activity was significantly associated with stage 2 or higher fibrosis.

“Routine measurement of HCV-related liver damage includes mostly the measurement of liver transaminases,” Dr Schulze-Osthoff said. “However, these surrogate markers detect very late stages of liver damage and approximately 25% to 30% of people have persistently normal serum transaminases.”

These findings, the authors of an editorial write, suggest that identification of cytokeratin-18 in blood may help identify people with aggressive disease despite normal aminotransferases.

The findings also suggest that HCV is an apoptotic liver disease, implying that antiapoptotic therapy may help prevent HCV-related liver disease, Drs Ariel Feldstein and Gregory Gores from the Mayo Clinic in Rochester, Minnesota, point out.

*Bantel H, et al. Detection of apoptotic caspase activation in sera from patients with chronic HCV infection is associated with fibrotic liver injury. Hepatology.

40(5):1078-87, 2004 Nov.

40

Abridged with thanks from www.medscape.com

The Hep C Review

Edition 48

March 2005

Long-term outcome of vertically acquired and post-transfusion hepatitis C infection in children The aim of our study* was to determine the natural history of perinatally acquired hepatitis C virus (HCV) infection, clinical and laboratory outcomes among 31 children with HCV infection. Fifteen children who had acquired HCV by blood transfusion (BT) prior to six months of age and 16 who had vertically acquired (VT) HCV were retrospectively reviewed.

Demographic data, clinical symptoms and signs, liver biochemistry, HCV antibody, HCV-RNA and liver histology were evaluated.

Average age at last medical visit was 13 years in the BT group and 8.6 years in the VT group. There were no abnormal clinical findings of chronic liver disease in either group.

Estimated HCV-RNA clearance rate was 19%, with no significant difference between the groups. In HCV-RNAnegative children (n = 6), two lost anti-HCV antibody and two developed indeterminate anti-HCV antibody results, while all HCV-RNA-positive children (n = 25) remained both anti-HCV antibody positive and HCV-RNA positive throughout follow up.

The alanine aminotransferase (ALT) level was significantly higher in the VT group than in the BT group during the first five years of life. Liver biopsy, which was carried out in four children, revealed mild to moderate fibrosis and/or necroinflammatory activity, but no cirrhosis.

Outcomes among children with HCV acquired in infancy demonstrate asymptomatic and slowly progressive disease, at least for the initial decade of infection. Mode of acquisition appears to have a limited impact on outcomes, with similar viral clearance and anti-HCV antibody seroreversion rates in vertical and transfusion acquired infection.

* Rerksuppaphol S, et al. Long term outcome of vertically acquired and post-transfusion hepatitis C infection in children. J Gastroenterol Hepatol 2004; in press.

Abridged with thanks from a email post, via NSP Forum.

research update Non-invasive assessment of liver fibrosis by liver stiffness measurement

Excellent prognosis in hepatitis C with sustained response to interferon

France - Despite limitations such as sampling error and risks of complications, liver biopsy remains the gold standard for assessment of liver fibrosis. Among alternative non invasive methods, liver stiffness measurement (LSM) based on transient elastography appears promising.

Netherlands - People with chronic hepatitis C who mount a sustained virological response to interferon therapy have an excellent long-term prognosis, results of a large European study* indicate.

The purpose of this study* was to investigate in comparison with histological staging in people with chronic hepatitis C (CHC) focusing on patients with the largest liver biopsy samples.

French researchers prospectively included 327 people with CHC who underwent both liver biopsy and LSM in four centres. LSM was performed with the FibroScan, a non invasive device measuring liver stiffness.

In order to minimise the bias of histological evaluation, fibrosis stage was assessed according to METAVIR classification by two experienced pathologists. Moreover, biopsies were selected to have at least ten portal tracts or obvious cirrhosis.

The studied population was then split into groups according to the biopsy sample length. Taking into account the whole studied population, LSM was significantly correlated with fibrosis stage.

The authors conclude, “LSM is a reliable, non invasive method for the evaluation of liver fibrosis in people with CHC.”

“The key end point for treatment efficacy in chronic hepatitis C is absence of detectable virus at six months after treatment,” investigators note in the October issue of the journal Gut*.

“However, the incidence of clinical events during longterm follow up of people with sustained virological response is still poorly documented and may differ between the Eastern and Western world,” they point out.

To investigate, they analysed individual data from a group of people treated in eight European follow up studies of interferon therapy for chronic hepatitis C. The sample included 286 sustained virological responders and 50 biochemical responders (detectable virus but normal alanine aminotransferase levels) who were followed for 59 months.

Among sustained virological responders, the rates of late virological relapse and decompensation were low after five years of follow up, 4.7% and 1.0%, respectively, and there were no cases of hepatocellular carcinoma (HCC).

Five-year survival was comparable to the general European population matched for age and sex.

Among biochemical responders, rates of decompensation and HCC were 9.1% and 7.1%, respectively.

*Ziol M, et al. Non invasive assessment of liver fibrosis by liver stiffness measurement (LSM) in patients with chronic hepatitis C (CHC): the importance of sampling. Abstract 263 (poster). 55th AASLD. October 29-November 2, 2004.

Boston, MA, USA.

Abridged with thanks from www.hivandhepatitis.com

Dr Solko Schalm of Erasmus Medical Centre in Rotterdam, the Netherlands, told Reuters Health, “The take home message is that in people with chronic hepatitis C, a blood test taken 6 months after stopping antiviral therapy can predict long term outcome.”

“If the sensitive PCR test detects no virus, the person can be considered cured from the infection and long term liver complications are rare,” he added.

*Veldt BJ, et al. Long term clinical outcome of chronic hepatitis C patients with sustained virological response to interferon monotherapy. Gut. 53(10):1504-8, 2004 Oct.

Abridged from a Reuters Health news item, 24 Sept 2004.

The Hep C Review

Edition 48

March 2005

41

opinion

Needle sharing has spread HIV [and hepatitis C] through prisons worldwide. But prevention program needles to drugs users are shunned by most institutions. The Lancet’s Rachael Davies asks why.

A

sentence of imprisonment should not carry with it a sentence of AIDS [or hepatitis C]. This phrase, often quoted by advocates for controlling HIV/AIDS in prisons, describes a right to health that most people take for granted. But in many countries - including those classed as most developed - it is, sadly, far from the truth.

Prisoners contract HIV at a significantly higher rate than the general population. In parts of Europe and the USA, up to 20% of inmates are HIV-positive. The virus is most commonly transmitted through the needles that addicts use to inject drugs, but most strategies for dealing with HIV in prisons focus on a zero-tolerance approach to drug users. Rocketing infection rates confirm that this approach doesn’t work, but governments are surprisingly reluctant to endorse alternative strategies.

Drugs and prison People who inject drugs are at far greater risk of contracting HIV than are other drug users and the general population.

And, as a result of their habit, these people make up a large proportion of the prison population.

Although prison tends to curb the frequency of injecting, the difficulty of smuggling needles and syringes into penal institutions means that “the few syringes available are shared among several people and are frequently traded”, says Gerry Stimson, executive director of the International Harm Reduction Association.

Diseases such as HIV are known to spread rapidly though communities of injecting drug users. Ralf Jurgens, executive director of the Canadian HIV/AIDS Legal Network, a research and policy group examining the legal and ethical issues related to HIV/AIDS, emphasises that prisoners often have no option but to subject themselves to the risk of HIV infection.

But he says they do want safe options. “Drug users in fact do care about their health”, he explains.

The response of authorities to the HIV infection crisis has often been to ignore the situation, rather than be seen to condone criminal activities such as use of illegal drugs. However, there is a wealth of evidence that shows prison epidemics can be prevented, stabilised, and even a reversed, by use of simple and cost effective harm-reduction strategies, such as needle-exchange programs (NEPs).

Clean needles needed Making sterile injecting equipment available through NEPs is viewed by some as the most effective HIV-prevention intervention for injecting drug users. These programmes, which suffered intense criticism early on, have been shown to be effective and viable for controlling HIV spread, and do not impede the safety or effectiveness of drug-prevention policies.

Furthermore, NEPs are inexpensive to operate; such programs have been successfully implemented in prisons in low-income countries such as Moldova and Kyrgystan.

Critics claim that NEPs could promote the use of needles as weapons. However, in surveys on the topic, prisoners consistently emphasise that there are many other things available to them to use as weapons and, more importantly, they see the value of having clean needles available to protect their own health. “They don’t want to risk the programs being closed”, comments Jurgens.

In light of all this evidence, why haven’t NEPs been implemented in more prisons? According to Jurgens, “there is not a lot of sympathy for prisoners”. He believes there is no political will to improve prisoners’ lives and, because most people are unaware of the extent of the HIV/AIDS problem in prisons, there is little recognition of the potentially disastrous consequences for public health.

In the mid 1980s, NEPs were approved for drug users in the general population (excluding prisons) by Europe, Australia, and Canada. However such programs were fiercely opposed in the USA, which continues to view this method of harm reduction as condoning drug use.

According to Stimson, drugs policy has been over politicised in the USA, both among minority groups who view NEPs as a white conspiracy and by groups on the political right as “pandering to drug use”.

All 50 US states have laws regulating the possession and distribution of sterile syringes as “drug paraphernalia”. The National Institute of Drug Abuse is still forbidden to do any research on needle exchange. But in 2002, injecting drug users accounted for 28% of new AIDS cases.

Since the 1970s, the USA has spent billions on law enforcement and imprisonment, in a largely futile effort to stem the influx and use of drugs. This zero-tolerance response to drug use is typified by the allocation of expenditures in the National Drug Control Budget - of US$12 billion, more than 60% ($7.2 billion) has been assigned to law enforcement, prohibition, and supply reduction.

Even now, NEPs are not politically popular because they symbolise a failure to keep prisons drug-free. As a result, most people in US prisons have no access to HIV-prevention services.

42

The Hep C Review

Edition 48

March 2005

opinion

ms that supply clean

Looking to Europe By contrast, many parts of Europe focus on harm-reduction strategies with an emphasis on the health and human rights.

Needle-exchange and community distribution programs have become a vital part of the public-health response to HIV transmission among drug users. Several community-based studies have shown these programs to be cost-effective and a viable preventive strategy.

However, the lack of interest in prisoners and drug use has meant that the response within prisons has been inadequate consisting mainly of educational programs, segregation of prisoners with HIV/AIDS, and methadone maintenance treatment.

Prison staff in particular are often opposed to NEPs because they have not witnessed the benefits of distributing clean needles. However, Jurgens believes these barriers can be overcome. “When such programs were introduced in Europe, the staff were initially opposed, but they understood quite quickly the importance of these measures”, he says.

Importantly, some penal institutions around the world have proved that NEPs can work. Switzerland has been distributing sterile injection equipment since 1992. And, as of 2004, NEPs had been introduced in 50 prisons in Switzerland, Germany, Spain, Moldova, Kyrgystan, and Belarus. These measures have decreased rates of drug use, syringe sharing, and HIV transmission. Needles have not been used as weapons, and there has been no recorded increase in drug use.

Unfortunately, however, these countries constitute only a tiny proportion of the worldwide prison population; most prisons do not have harm-reduction strategies and HIV-infection rates remain consistently high. Particularly high rates have been reported in Spain (16.6%) and in Portugal (20%). In Eastern Europe, 7% of Ukrainian prisoners, and 15% of those in Lithuania, are reported to be HIV-positive; in South Africa the rate is 41%. In some areas of the USA, HIV infection rates are over 20%.

International support UNAIDS and WHO have pledged support for NEPs in prisons in countries where similar programs operate in the community. But these endorsements have done little to affect adoption of NEPs in countries that disagree with them. WHO and UNAIDS produced guidelines in 1987 (and revised them in 1993) to provide technical recommendations for the management and prevention of HIV infection in prisons, including the availability of prevention measures and access to treatment equivalent to that in the community.

Jurgens says it is now time to revise these recommendations to promote successful studies done with NEPs. “The 1993 guidelines are generally very good, but they are now over 10 years old”, he says. “Countries that have been successful should get presented as best practice”, he adds.

More importantly, NEPs need to be promoted by all the UN agencies especially WHO, United Nations Office in Drugs and Crime, and UNAIDS, says Jurgens. He believes initiatives such as WHO’s “3 by 5" should contain an HIV in prisons component and that the Global Fund for AIDS, Tuberculosis, and Malaria should take the needs of the prison system into account.

According to Jurgens, tackling HIV in prisons needs a comprehensive strategy. It is important to understand the promises and limits of treatment for drug use” as well as understanding that “NEPs are crucial but alone will not solve the problem”, he says. Prisons systems that have achieved the most success in preventing the transmission of HIV have developed and promoted harm-reduction and treatment strategies together - making bleach, condoms, methadone maintenance, needle exchange, and other drug treatment available.

A right to health Experts agree that future efforts to control HIV in prisons must involve directing scarce resources to known effective treatment interventions for users of injection drugs, and making sure that prison workers facilitate these efforts.

“Getting prison staff on-side and prison resources is a crucial public-health issue”, says Stimson. But political support is crucial.

On Feb 23, 2004, the Dublin Declaration on HIV/AIDS in Prisons in Europe and Central Asia was launched. It states: “Under national and international law, governments have a moral and ethical obligation to prevent the spread of HIV/ AIDS in prison.”

People in prison have an equivalent right to health to their free counterparts. This includes preventive measures to protect themselves from HIV. Most people who are sent to prison return to the community and are therefore a potential source of infection for the general population. “Unless we prevent HIV infection in prisons this will have big consequences for the health of everyone”, Jurgens warns.

This article is abridged with thanks from www.thelancet.com © Elsevier Ltd.

The Hep C Review

Edition 48

March 2005

43

research update Risk factors for liver cancer identified in asymptomatic HCV

Sleep and fatigue in people with chronic hepatitis C

Japan - High alanine aminotransferase (ALT) levels, male sex, advancing age and lower serum cholesterol all increase the risk that people with asymptomatic hepatitis C virus (HCV) infection will develop hepatocellular carcinoma (HCC), Japanese researchers report*.

USA - Fatigue and disordered sleep have been shown to affect quality of life in people with chronic illnesses. The purpose of this study* was to evaluate fatigue and sleeping behaviour reported by people with chronic hepatitis C (CHC).

While HCV infection is a known risk factor for HCC, Dr Hideo Tanaka of the Osaka Medical Centre for Cancer and Cardiovascular Diseases and colleagues note, it is unclear what percentage of people with asymptomatic infection will go on to develop cancer.

Those people studied completed the Fatigue Severity Scale (FSS) resulting in a total average fatigue score. Subjective sleep quality was measured using the Pittsburgh Sleep Quality Index (PSQI).

To investigate, the researchers looked at a group of individuals 40 years or older who donated blood between 1991 and 1993, some of whom were found to have HCV infection. Study participants included 1,927 individuals with HCV but without hepatitis B virus (HBV) infection; 2,519 HBV-infected individuals who were HCV negative; 25 people infected with both HBV and HCV; and 150,379 seronegative controls. People’s records were followed until 31 December 2000 or a diagnosis of HCC, for an average follow-up of 99 months.

Among men with HCV, the cumulative risk of developing HCC was 21.6%, while the risk for women was 8.7%.

HCC risk increased in tandem with rising ALT levels, and also increased as baseline serum cholesterol levels dropped. Cancer risk increased with age among both men and women.

Two thirds of individuals with HCV infection had low ALT levels at baseline, and their risk of HCC was low, while the one third with high ALT had an incidence of HCC similar to that seen among people diagnosed with chronic hepatitis.

Among individuals with both HCV and HBV infection, HCC incidence over 9 years was 12%, compared to 3% for those with HCV only and 2% for those with HBV only.

The findings underscore the importance of developing effective HCV screening programs in countries where the infection is prevalent, the researchers conclude.

*Tanaka H, et al. Prospective study on the risk of hepatocellular carcinoma among hepatitis C virus-positive blood donors focusing on demographic factors, alanine aminotransferase level at donation and interaction with hepatitis B virus. Int J Cancer. 112(6):1075-80, 2004 Dec 20.

44

Abridged with thanks from a Reuters news item.

The Hep C Review

Edition 48

March 2005

The study group included 59 people with chronic hepatitis C attending adult liver clinics who completed both the FSS and PSQI questionnaires. 24 people were non-cirrhotic, 31 were cirrhotic and 4 were unknown. No one was receiving antiviral therapy at the time of assessment.

The mean FSS score was 4.69 indicating greater fatigue than past reports of normal healthy adults (2.3) or other studies into people with CHC (3.8).

64% of the group were found to be ‘poor sleepers’ as defined by a global PSQI score of > 5. There was no significant difference between males and females on both measures.

Significant correlations were found between the FSS score and the global PSQI score, and with 6 of the PSQI component scores: subjective sleep quality, sleep latency, sleep duration, habitual sleep efficiency, sleep disturbances, and daytime dysfunction.

There were no significant differences between cirrhotic and non-cirrhotic patients on the FSS and PSQI global score.

The authors concluded that people with CHC suffer from poor quality of sleep regardless of their stage of liver disease, and that fatigue is significantly correlated to poor sleep quality.

*55th AASLD. October 29-November 2, 2004. Boston, Carlson MA, et al. Sleep and fatigue in patients with chronic hepatitis C. Abstract 19 (poster).

Abridged with thanks from www.hivandhepatitis.com

research update Short treatment for some genotypes?

Norway - Because people with genotype 2 or 3 HCV typically respond well to interferon-based therapy, a Norwegian research team explored whether a shorter than usual treatment duration could still be beneficial.

In a non-controlled trial, researchers studied 122 people with genotype 2 or 3 HCV treated with pegylated interferon (Peg-Intron) plus ribavirin.

Results were reported in the December 2004 issue of Hepatology*.

The 95 people (78%) who experienced an early virological response (undetectable HCV RNA at weeks 4 and 8) received treatment for 14 weeks, while the remaining 27 (22%) were treated for the standard 24 weeks.

Six months after the end of therapy, 90% of those in the 14-week arm (85 out of 95) and 56% in the 24-week arm (15 out of 27) achieved sustained virological response.

In other words, a larger proportion of those treated for the shorter period had successful outcomes. People with genotype 3a and lower pre-treatment HCV viral loads were more likely to achieve SVR after 14 weeks of therapy.

If larger, randomised controlled trials confirm these results, a shorter course of therapy could become standard for early responders with genotype 2 or 3 HCV, thus shortening the duration of side effect and reducing the cost of treatment.

*No futher information available.

Abridged with thanks from hcvadvocate.org

Interferon stabilises fibrosis progression

Spontaneous HCV clearance

France - Interferon therapy (with or without ribavirin) can stabilise and potentially improve even severe liver fibrosis or cirrhosis, according to a report in the November 2004 issue of the European Journal of Gastroenterology and Hepatology.

French researchers studied 96 people treated with interferon plus ribavirin and 64 treated with interferon alone.

In sustained responders, the fibrosis progression rate decreased from 0.26 to –0.67 Metavir units. Even in nonresponders, the rate decreased from 0.25 units before treatment to 0 units during therapy.

One-third of sustained responders (6 out of 18) and 9% of non-responders (4 out of 43) experienced reversion from cirrhosis (stage F4) to severe fibrosis (stage F3); however, no people with cirrhosis had a two-point decrease.

Since interferon stabilised fibrosis progression even in non-responders treated for 12 months, the researchers suggested that longer durations of therapy should be explored in these people.

Abergel, A. et. al. Histological response in patients treated by interferon plus ribavirin for hepatitis C virus-related severe fibrosis. Europ J Gastro & Hepatol. 16(11):1219-1227, November 2004.

Abridged with thanks from hcvadvocate.org

Australia / USA - In the October 2004 Journal of Infectious Diseases*, Marianne Jauncey and colleagues reported that as many as 42% of injection drug users (IDUs) may spontaneously clear HCV within two years of infection, based on a retrospective analysis of stored blood samples from 99 IDUs seen at the Kirketon Road Centre, Sydney.

The average time to clearance was about six months. When the researchers restricted their analysis to individuals who previously had a documented detectable HCV viral load, the rate of spontaneous clearance was lower (24%), suggesting that some of the original 42% had a false-positive HCV antibody diagnosis.

Using a model, the researchers predicted that HCV clearance should occur in 23% of newly infected individuals by six months and in 38% by 12 months, levelling off to 40% by 24 months.

In another recent study, reported in the October 2004 issue of Hepatology**, Barbara Piasecki and colleagues found that among a group of nearly 500 US veterans (203 with spontaneous clearance; 293 with chronic infection), spontaneous HCV eradication was less likely to occur in individuals who were heavy alcohol drinkers or were coinfected with HIV, while coinfection with hepatitis B virus increased the probability of HCV clearance.

*Jauncey M, et al. Clearance of Hepatitis C Virus after Newly Acquired Infection in Injection Drug Users. J Infect Dis. 2004;190(7): 1270-1275 **Piasecki BA, et al. Influence of alcohol use, race, and viral coinfections on spontaneous HCV clearance in a US veteran population.

Hepatology. 2004 Oct. 40(4):892-9.

Abridged with thanks from hcvadvocate.org

The Hep C Review

Edition 48

March 2005

45

interferon-based therapy Peg interferon alpha and ribavirin

Interferon alpha and ribavirin

Subsidised ‘peg combo’ treatment for people with chronic hepatitis C is available to those who satisfy all of the following criteria:

Subsidised ‘standard combo’ therapy is made available to two groups of people: those who have not had previous interferon monotherapy or those who have relapsed following previous monotherapy treatment (where such treatment would have complied with the criteria for PBS S100 subsidy). In addition, people need to satisfy the following criteria:

1

Biopsy: people must have evidence of Metavir stage 2, 3 or 4 fibrosis (or equivalent index), or stage 1 fibrosis with grade A2 or A3 inflammation. People with coagulation disorders considered severe enough to prevent liver biopsy are exempt from this criteria point.

2

Blood tests: people must have abnormal ALT levels in conjunction with documented chronic hepatitis C infection (repeatedly antibody positive or PCR positive).

3

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

4

Age: people must be 18 years or older.

5

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, the 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, the treatment course 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.

1a For those who have not had previous monotherapy: people must have biopsy evidence of Metavir stage 2, 3 or 4 fibrosis (or equivalent score) or stage 1 fibrosis with grade A2 or A3 inflammation. People with coagulation disorders considered severe enough to prevent liver biopsy are exempt from this criteria point.

1b For those who have relapsed following prior monotherapy: people must have biopsy evidence of chronic hepatitis C, except for people with coagulation disorders considered severe enough to prevent liver biopsy.

2

Liver function tests: people must have abnormal ALT levels in conjunction with documented chronic hepatitis C infection (repeatedly antibody positive or PCR positive).

3

Contraception: pregnancy must be avoided during treatment.

Women of childbearing 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 person). Men undergoing treatment and their female partners must use effective forms of contraception (one for each person). Female partners of men undergoing treatment must not already be pregnant.

4a For people previously untreated: the course is limited to 24 weeks, except for those with genotype 1 and those with cirrhosis or bridging fibrosis (regardless of genotype), for whom the treatment course lasts for 48 weeks. After the first 24 weeks, people eligible for 48 weeks treatment may only continue if HCV is not detectable by PCR qualitative test.

4b For people who have previously relapsed: treatment is limited to 24 weeks. After 12 weeks of therapy, treatment is to cease if HCV remains detectable by PCR qualitative test.

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.

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 haemolys (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.

46

The Hep C Review

Edition 48

March 2005

complementary therapies Peg Interferon Alpha-2b

Complementary therapies

Government-funded PegInterferon Alpha-2b involves a course of weekly pegylated interferon injections for up to 52 weeks. People are asked to visit their GP or specialist for follow-up visits during and after treatment. Aside from modest Pharmaceutical Benefits Scheme charges, there may be additional nominal costs depending on particular treatment centres.

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.

When interferon molecules are pegylated, the drug lasts longer in the body. It is injected once a week and ensures a more consistent therapeutic dose rather than the peaks and troughs of thrice weekly injections.

PegInterferon Alpha-2b monotherapy leads to a sustained response in around 25% of those who try it, basically doubling the sustained response rate of basic interferon monotherapy.

Government-funded treatment is offered to people 18 years or older who have chronic hepatitis C and compensated liver disease, and who have received no prior interferon therapy, and who have a contraindication to ribavirin (can’t tolerate it) and who satisfy all of the following criteria: 1

Biopsy: people must have histological evidence (liver cell damage as viewed under a microscope) of chronic hepatitis on liver biopsy, except in patients with coagulation disorders considered severe enough to prevent liver biopsy.

2

Liver function tests: people must have abnormal ALT levels in conjunction with documented chronic hepatitis C infection, i.e. repeatedly antibody positive and/or HCV RNA (PCR) positive.

3

Other liver damage: people mustn’t have other forms of chronic liver disease.

4

Contraception: women of childbearing age must not be pregnant, not breast-feeding, and must be using an effective form of contraception.

The treatment course is limited to 0.5 to 1 microgram per kilogram weekly for up to 48 weeks. People may only continue treatment after the first 12 weeks if the result of an HCV RNA quantitative assay (PCR viral load test) performed at the same laboratory using the same test, shows that the plasma HCV RNA has become undetectable or the viral load has decreased by at least a 2 log drop.

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.

Alternative access People wanting to access interferon-based therapy outside of the government subsidised S100 scheme can purchase treatment drugs at full price or seek access through industry-sponsored special access programs. For more information, people should contact their nearest treatment centre. For telephone numbers, please call the Hep C Helpline (see p48).

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

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

Is the treatment dangerous if you get the prescription wrong?

•

How has their complementary therapy helped people with hep C?

•

What are the side-effects?

•

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

•

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

•

How have they measured the health outcomes of their therapy?

•

How do they aim to help you ?

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

You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask your natural therapist about money before you visit them. Many will come to arrangements about payment; perhaps a discounted fee?

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

It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you may want to consider changing your natural therapist.

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

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

NSW treatment centres 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 gaols for women) and various clinics for monitoring ongoing treatment.

The Hep C Review

Edition 48

March 2005

47

support / info services Hep C Helpline For free, confidential and non-judgmental information and emotional support you can phone the NSW Hep C Helpline. The service gives you the opportunity to talk with trained phone workers and discuss those issues important to you. It also provides referral to local health care and support services:

• •

9332 1599 (Sydney callers)

The services are free and the staff are experienced in all aspects of drug and alcohol use and associated conditions. If you are worried about your own or someone else’s drug and alcohol problem, phone the Alcohol & Drug Information Service (ADIS) on 9361 2111 or 1800 422 599, or contact your local hospital or community health centre who will also be able to advise you on your nearest clinic.

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

Sexual health clinics

1800 803 990 (NSW regional callers)

Prisons Hep C Helpline A special phone service, provided through the NSW Hep C Helpline that can be accessed by NSW prisoners and prisons staff. You can call this free and confidential service by using your Smartcard, or by calling the numbers above.

Community health centres Community Health and Neighbourhood Centres exist in most towns and suburbs.

They provide different services, including counselling, crisis support and information on local health and welfare agencies.

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

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

General Practitioners It is important that people find a wellinformed GP who can support all longterm health care needs. Ideally, a doctor should be able to review and monitor a person’s health on a regular basis and provide psychological and social support if needed. GPs should also be able to act as advocates to help with difficulties in other parts of the health care system. GPs should be able to advise when it is necessary to seek specialist advice or further investigations or about research trial options. The NSW Hep C Helpline may be able to refer people to doctors and other health care workers in their area who have been involved in hepatitis C training.

Although hepatitis C is not classified as a sexually transmissible disease, staff at these clinics can offer a range of services including pre- and post-test discussion and HCV blood tests. They are listed in your local phone book under ‘sexual health clinics’.

If you are concerned about confidentiality, these clinics do not need your surname or Medicare card and keep all medical records private.

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

Traids services are free and confidential, and on either a face-to-face or telephone basis.

They also run support groups and have a regular newsletter. Current hepatitis C information is available. For more information, phone 02 9843 3143 (Traids have an immediate call back policy for NSW regional callers).

Family & relationship counselling If hepatitis C is impacting on your family relationships, it may be wise to seek family or relationship counselling. To find out more, contact Relationships Australia on 9418 8800 or 1800 801 578.

Advice on food & nutrition Accredited Practicing Dietitians (APD) are qualified dietitians engaged in a formalised system of ongoing professional updating. Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, call the Dietitians Association of Australia: 6282 9798 or 1300 658 196 or www.daa.asn.au

Cultural and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) works with culturally and linguistically diverse individuals and communities to achieve better health and wellbeing in relation to HIV/AIDS and hepatitis C, and to encourage and support health services working in these areas to respond appropriately and equitably. MHAHS targets 20 different language groups, but is also available to other individuals and communities from culturally diverse backgrounds seeking assistance. For more details, phone 9515 3098 or 1800 108 098 or just visit http://www.multiculturalhivhepc.net/ to access hepatitis C information in languages other than English.

Alcohol & other drug services

NSW Health hepatitis C regional coordinators Central Coast

4320 3399

Nthn Rivers

6620 7539

People who inject drugs and want to access peer-based information and support should phone NUAA (the NSW Users and AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers).

Central Sydney

9515 8643

Nthn Sydney

9976 9860

Far West NSW

08 8080 1511

SE Sydney

9382 7637

Greater Murray

6058 1700

Sth West Sydney

9828 5906

Hunter

4924 6477

Southern

6124 9922

Illawarra

4223 8341

Wentworth area

4734 3877

Macquarie

6841 2256

Western Sydney

9840 4110

Mid Nth Coast

6562 6066

NSW health services have a number of Drug and Alcohol clinics set up around the state. These centres offer confidential advice, assessment, treatment and referral for people who have a drug/alcohol problem or who have concerns about the use of these substances.

48

The Hep C Review

Edition 48

Mid West

6339 5283

New England

6766 2288

March 2005

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

These different times allow people who work or study to also attend. We meet at the PSN House at North Gosford. We also have guest speakers, general discussion and outings. You will always get a cuppa.

For information, please contact Leslie on 4323 2905.

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 kicked off the new year on 20 Jan and meets on the first and third Tuesday of each month. St Vincent’s Hospital, Darlinghurst For information, please contact Zoe Potgieter 8382 2887.

Coonabarabran Hepatitis C Support Group Meets in the Health Counsellor room, Coonabarabran Community Health building. For information, please contact Gary McKernan on 6842 2507.

St George Support Group Meets 7pm on a Thursday, every 2 months in Waratah Clinic. Guest speakers are featured. Light refreshments are provided.

For information, please contact Janice or Robyn on 9350 2957.

Hunter Hepatitis C Support Services A service that is open to all people of the Hunter living with HCV and is linked to a team of health care professionals specialising in hepatitis C treatment & care. Based at John Hunter Hospital, Lookout Rd, New Lambton.

For information, please contact Gabrielle Murphy on 4921 4762 or Tracey Jones on 4921 4789.

Nepean Hepatitis C Support Group Guest speakers keeping you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided.

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

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

Northern Rivers Support Groups Support groups often come and go. For information, please contact Wendi Evans on 6620 7539 or Marilyn Lebeter on 07 5506 6858.

Westmead Support Group A support group for people living with hepatitis C, including those on treatment. People from any area are welcome.

From 7pm to 8.30pm, every 1st Thursday of each month (except Dec & Jan) at Room 2, Level 2, Parramatta Health Service, 158 Marsden St, Parramatta. There is free parking, with entry via George Street.

Otherwise, it is a 10 min walk from Parramatta station.

For information, please contact Sen Kee on 9845 7706, Gabrielle or Maria on 9843 3143, or Frances or Susan on 9840 4110.

Westmead Hepatitis C Information Nights Our Information Nights are aimed for people with hep C, families, friends and interested others. Our speakers talk about various aspects of hepatitis C such as: research about the virus, transmission, treatment and symptom relief. People who have hepatitis C or who have successfully undergone treatment often speak of their experiences and we also allow time for questions and answers.

Supper is generally provided as we know this can be an awkward time for some people. Parking is available at the hospital but you will need five dollars in coins. Alternatively, it is about a ten-minute walk from Westmead station. Go to the main entrance of the hospital and ask for directions at Reception, or look for our signs.

There is no charge for the Information Night and people from any area are most welcome.

For information, please contact Sen Kee on 9845 7706, Gabrielle or Maria on 9843 3143, or Frances or Susan on 9840 4110.

The Hep C Review

Edition 48

March 2005

49

noticeboard Our loan library

Would you like to know more about your diet, metabolic rate and body composition?

Library loans are available for up to 4 weeks. Please call the Hep C Helpline on (02) 9332 1599 (Sydney callers) or 1800 803 990 (other NSW callers) to request the item you require. Items are loaned free of charge but borrowers are required to pay return postage. Please enquire about postage rates when you call the Helpline.

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

The Albion Street Centre is running a study to look at dietary intake, metabolic rate and antioxidant levels in people with hep C.

Hepatitis C – An update on testing and management (RHEF, 2001): Approx 90 mins; a hepatitis C management video for health care workers. Covers testing, monitoring, injecting drug use, lifestyle management and treatments. English.

This is like being offered a diagnostic check up for free! It would involve one visit to the Albion Street Centre, not far from Central Train Station.

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

If you live within 2-3 hrs travel from Sydney CBD and are interested in this study, please contact the Nutrition Unit (Simon or Louise) on 02 9332 9600.

Look Back Look Forward (Kathy Sport/Ronin Films, 1998): Approx 30 mins; real life stories of peoples’ experiences with hepatitis C and interviews with health specialists. Suitable for individuals and health workers. English. (Council members only)

Photo courtesy of Dave Bredeson Photography.

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

Suitable for individuals and health workers. (Members only)

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

HCCNSW

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

Transplanting a hepatitis C infected liver into someone who already has hepatitis C makes good sense - if the newly transplanted liver is in a reasonably healthy condition (e.g. non-cirrhotic) and non-HCV livers are available for that person at the time.

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

50

The Hep C Review

Edition 48

March 2005

HCCNSW

membership form / renewal form / tax invoice An invitation to join / rejoin the Council Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730 About the Council We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to represent and provide services to people affected by hepatitis C throughout NSW. The Council is overseen by a voluntary Management Committee, primarily made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and support of our members.

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

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

Suburb/town State

Postcode

Home phone

Email:

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

Privacy policy The Hepatitis C Council of NSW respects and upholds your rights to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information. For a copy of the policy, please contact the Council office on 02 9332 1853 (Sydney and non-NSW callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hepatitisc.org.au

Membership Our membership year begins on 1 March and runs to the end of February the following year. Like all sporting, social and political clubs, all members (including Zero Fee members) must renew their memberships on an annual basis.

We urge members to renew their memberships as this income assists the Council greatly in its work throughout the year.

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

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

Suburb/town State

Postcode

Work phone

Work fax

Mobile

Email:

May we list you on our referral database?

Copies of The Hep C Review required?

1

2 5 10 20 50 100

1

2 5 10 20 50 100

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

Suburb/town State

Postcode

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

Work phone

Work fax

Mobile

Email:

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.

Copies of The Hep C Review required?

May we list you on our referral database?

The Hep C Review

Edition 48

March 2005

51

membership form / renewal form / 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.

No, 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:

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

No, but 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.

Card number:

I'm not sure - please check your database.

Card type

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:

MasterCard

Expiry date:

Visa

month:

Bankcard

year:

Cardholder signature:

Waged: for people in paid employment

$25

Concessional: 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

Community-based agency (Management Committee run)

$50

Public/private sector agency

$70

Please print cardholder name:

7. Payment, GST and postage instructions All Council membership fees are GST exempt but for most people, our membership fees are not tax deductible.

If paying by cheque or money order, please make payments out to: Hepatitis C Council of NSW - Membership Please post payments to The Hepatitis C Council of NSW PO Box 432 DARLINGHURST NSW 1300

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

Our ABN is 96 964 460 285

8. Would you like us to post you a receipt?

4. Contact with the Council office.

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

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.

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 soley in accordance with the Council's privacy policy.

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

Signed:

Please do not contact me regarding volunteer work for the Council.

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 52

The Hep C Review

Edition 48

March 2005

receipt number

date entered

membership number

info pack sent?