Hep Review ED69

The Hep Review Winter

June 2010

Edition 69

Awareness Week 2010 Hep C diabetes link A vaccine for hep C

Hep B: a poor cousin Four new hep resources World Health Assembly resolution The Hep Review Edition 69 June 2010 1

editor’s intro

a keyhole to our work

Hello readers

Hepatitis NSW – working with Aborigin

World Hepatitis Day and the Australian Hepatitis Awareness Week have rolled around. It’s great to see these awareness raising events continuing and growing bigger each year. I sometimes wonder though, when we talk of hepatitis awareness, whether we really know much about the people in Australia who are affected by hepatitis B and C?

SW has the largest Aboriginal population of any state or territory. Aboriginal incarceration rates in NSW, already disproportionate across Australia, continue to rise.

Researchers have examined in detail how these viral infections are transmitted, and what typically happens to people over time. They continue to develop more effective treatments and vaccines.

They are also homing in on the genetic essence of these viruses and how they work. But here in Australia, do we really understand the humanity behind our hepatitis B and C epidemics?

In order to develop and target effective educational resources – like this very magazine – it’s important to understand your readership. I’ve been working in this sector for over 15 years and I’ve yet to see much examination into the background of Australia’s 220,000 people living with chronic hep C. We have seen age, gender, geographical breakdowns, and needs assessments within small groups of people already associated with hep organisations, but what do we know about all 220,000 of you? What are your educational backgrounds? How do you earn a living? Are you paying off mortgages? How many children do you have? How do you cope with your hep C? What questions do you have about hep C? Our readership surveys hint at the answers but there is usually a pretty poor response rate and, importantly, they don’t reach the thousands of people with hep C who don’t read this magazine.

There have to be other ways to find the answers.

Do you have any suggestions? Please write in with your thoughts.

N

With hep C endemic in prisons and with incidence and prevalence at relatively higher levels among Aboriginal people, it is no surprise that hep C rates amongst Aboriginal people in NSW are estimated to be up to three times higher than the non-Aboriginal population.

In line with the Third National Hepatitis C Strategy, the National Hepatitis B Strategy and the Third National Aboriginal and Torres Strait Islander Blood Borne Viruses and Sexually Transmissible Infections Strategy, Aboriginal people remain a key priority population in our work and we are committed to providing culturally appropriate and inclusive services. While all the work of Hepatitis NSW reflects that commitment, we are involved in a number of specific initiatives that address the additional hep C related needs of Aboriginal communities in NSW. Our Coordinator of Aboriginal Projects, Kerry Walker, was employed in 2009. Kerry undertook a mapping of NSW services providing hep C testing, treatment, education and support for Aboriginal people. In keeping with general NSW trends, three key issues were identified: inconsistency, lack of identifying data on Aboriginal status and alarmingly high diagnoses of hep C amongst young Aboriginal people in alcohol and other drug rehabilitation settings.

Kerry attends the NSW Aboriginal Sexual Health Workers’ Network meetings and serves as a representative on a number of Aboriginal Advisory Groups/Committees: 1. NSW Aboriginal Sexual Health Advisory Committee where key stakeholders represent issues around blood borne viruses (BBVs) and sexually transmitted infections (STIs).

Paul Harvey, Editor

Weblink of the month

Our weblink of the month is http://www.aminumber12.org/ This is the homepage for World Hepatitis Day. Whether you are a healthcare worker, someone living with hep C or a member of the general community, check it out.

Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.

2 www.hep.org.au

Cover pic by :Bron: courtesy of www.flickr.com

acknowledgements

nal people across NSW 2. Aboriginal Sexual Health BBV Prison Project Interagency; addresses issues around incarceration and health.

3. Improving access to HCV treatment among Aboriginal people Project Advisory Committee. NSW Health’s AIDS and Infectious Diseases Branch secured funding through the National Partnership Agreement – Indigenous Health for a four year program to improve access to hep C treatment, care and support across NSW. It has four projects: a) $900,000 p.a. over four years to fund nine Aboriginal hep C coordinator positions in Area Health Services, ACCHS and in Justice Health. b) $90,000 p.a. over two years: workforce development to clinical care teams in ACCHS and for GPs working with Aboriginal communities to address hep C. Continued on page 44.

Seeking your story

Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Lia Purnomo Rachel Stanton Gideon Warhaft Scott West Hep Review medical and research advisors: Dr David Baker, Prof Bob Batey Ms Christine Berle, Ms Sallie Cairnduff Prof Yvonne Cossart, A/Prof Greg Dore Prof Geoff Farrell, Prof Geoff McCaughan Mr Tadgh McMahon, Dr Cathy Pell Ms Ses Salmond, A/Prof Carla Treloar Dr Ingrid van Beek, Dr Alex Wodak S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Andi Andronicos Prue Astill Margaret Hancock Gerard Newham Adrian Rigg Maureen Steele Cindy Tucker Dog on the moon comic: Andrew Marlton Contact The Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au text/mobile 0404 440 103 post The Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney

Personal stories provide balance to our other articles. Please consider telling us your story.

Published articles attract a $50 payment.

Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published.

Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.

Seeking your ideas We want The Hep Review to remain relevant to you. If you have any ideas we can use as topics for our commissioned articles (e.g.. see page 20), let us know. If we pick up and run with your idea, you could win a $50 ‘finder’s fee’.

Just phone and ask for Paul (02 9332 1853), or email pharvey@hep.org.au or text me on 0404 440 103.

Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation. We are funded by NSW Health.

The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body.

Contributions to The Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and whether they want their name published.

We’re happy for people to reprint information from this magazine, provided The Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to graphics or cartoons.

ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www.flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.

The Hep Review Edition 69 June 2010 3

contents Opinion

Letters Battling hep C – help prisoners and help the community Treating treatment better

5 5

Hep B advice

5

News World Health Assembly viral hep resolution

6

Nobel winner’s Hawaiian liver cancer awareness 6 EU researchers build 3D virtual liver

7

Insite injecting centre to remain open

8

US campaign to dispel hepatitis stigma needed

8

Doctor’s note needed to attend church

9

Employee says he was fired because of hep C

9

Mosques help raise UK hep C awareness

10

NSP in Tajikistan prisons

10

Red-shirts blood high in hep

11

Irish aid project confirms high Vietnamese hep B 11

Time to decriminalise drugs

43

Promotions Four brand new hep C resources hit the streets

7

Sydney Central support group

29

St Vincent’s Hospital viral hepatitis clinic trials 29 HALC legal centre

44

Central Coast support group

44

Hep C bookmarks

46

www.hep.org.au 46 7th Australasian conference on viral hepatitis

52

Transmission Magazine 53 Hep Connect

53

Research updates Hep C incidence and risk in Australian prisons 47 Hep C treatment results: how should they be handled? 47

US considers chimp experiments ban

12

Doctor investigated over hep C cases

12

Words used to describe drug use can contribute to stigma 48

Blood Service goes automated

13

Virus eyed as new treatment for cancers

48

Social research conference

13

Hepatitis Awareness Week 2010

13

Historic trauma in Canadian Aboriginal people boosts hep C risk

49

National strategies endorsed

14

The Big Day Out study

49

Hepatitis NSW and Awareness Week

14

Boost for NSW needle program

15

Mouse gets human liver

50

Researchers probe hep C diabetes link

51

Obesity is now more deadly than smoking

17

Tree shrew offers new hep C research options

51

Men get health advice on tap

18

Features

Inactive hep B virus can still cause liver cancer 50

Regular features

Hepatitis B: a poor cousin knocking on our health system’s door 20

A keyhole to our work – working with Aboriginal people across NSW

Claire’s gone but a much thornier question remains 24

Q&A – Second chance at subsidised treatment 15 Harm reduction poster – Finding a vein

30

Fearless to the end: remembering Margaret Moth 27

The little book of hep B facts

37

A vaccine for hep C: a worthy and attainable goal 28 Bad seed 32

Hello Hepatitis Helpline – workplace disclosure

42

Membership matters

45

A historical perspective (from June, 1994)

45

Interferon-based treatment

54

Complementary medicine

55

Support and information services

56

All you need to do is ask: Where did HIV and health promotion go?

38

Social determinants of health: transport

40

My story

2

Noticeboard 58

Paul’s story: twenty-five years on and twenty weeks to go

16

Do you want to help us?

58

Susan’s story: to treat or not to treat?

26

Upcoming events

58

Elaine’s story: dog walks and letterbox drops

35

Complaints 58

Bluey’s story: the roadtrip and the wait

36

Membership form / renewal / tax invoice

4 www.hep.org.au

59

letters Battling hep C - help prisoners and help the community Transmission of hep C poses a well-known and critical problem. While it affects only about 1% of the general community, up to 70% of women in prison, and approximately 35% of incarcerated men, live with it (McNeill, 2009).

This disparity between the general population and prison inmates seems to be related to an important difference – access to sterile drug injecting equipment.

The Federal Department of Health released a report on an the benefits of needle and syringe programs (NSPs) in Oct 2009 suggesting that nearly 100,000 hep C infections were prevented, resulting in saving 33,000 Disability Adjusted Life Years.

McNeill regretted the fact that certain subgroups do not have access to NSPs (e.g. prison inmates) and argued for appropriate policy and practice decisions on political levels.

The introduction of NSPs in prison is a controversial issue. Concerns are expressed that needles may be used as weapons, however international evidence suggests that “prisonregulated and controlled NSPs actually increase institutional safety” (Ryan et al). In the interest of prisoners, and the broader community, prisonbased needle and syringe exchange appear to be imperative in order to minimise harm from the transmission of BBV such as hep C. Mellor (2003), a medical practitioner working among incarcerated women in the US, addressed the issue by asking: “How long before the ticking bomb explodes into the wider population and everyone pays the price?”

•

Marika Guggisberg, CHIRI and Centre for Population Health Research, Curtin University, Perth.

References McNeill, H. (2009). Good Liver, Hepatitis Victoria Newsletter, 23 April 2010.

Mellor, P.A. (2003). The Inside Story on Prison Health.

British Medical Journal, 326 (7379), p. 59.

Ryan, J., Voon, D., Kirwan, A., Levy, M., & Sutton, L. (2008). Prison, Needles, and OHS. Page 166.

Treating treatment better There are very many stories emerging now about the potential long term health and emotional costs of undergoing hep C treatment.

How is the system going to change and develop to help ensure that undergoing treatment is a positive longterm investment for individuals?

Or, if these stories are overblown, as I have heard some doctors allege, then what is the system doing to allay these fears and respond to the concerns of those infected, their families, and workers involved?

•

Elizabeth Merrilees, NSP worker, Kings Cross.

Hep B advice I’m 35 years old. In 2006 I found out from my doctor that I was a hep B carrier. Since then I’ve been getting blood tests each year and they always say that I am still a hep B carrier (hep B surface antigen positive, hep B core antibodies positive). However, I feel fit and normal, rarely get sick, exercise regularly and have a good diet – no alcohol and no smoking.

Are there any symptoms I should look out for that would indicate that I am getting sick due to being a hep B carrier? Do hep B carriers usually end up dying due to liver related problems?

•

Anonymous, NSW. We’ve put the author in contact with the Hepatitis Helpline. Also see article, page 20

International Journal of Prisoner Health, 4(3), 164-168

The Hep Review Edition 69 June 2010 5

Image courtesy of Google Images

news

World Health Assembly viral hep resolution UK – The World Health Organization Executive Board will recommend a resolution on viral hepatitis to the World Health Assembly in May 2010. If adopted, the resolution would for the first time provide a framework for international action to prevent, diagnose and treat heps B and C. In addition, the resolution would provide global support for an official World Hepatitis Day, and provide a focus for national and international awareness-raising efforts. Should the resolution be passed it has been proposed that World Hepatitis Day be celebrated annually on July 28 from 2011 onwards, commemorating the birthday of Dr Baruch Blumberg, the codiscoverer of the hepatitis B virus. However, this will be discussed further at the World Health Assembly.

“The adoption of the resolution by the World Health Assembly in May will be a clear statement that viral hepatitis now has the same priority as the other major world diseases” said Charles Gore, President of the World Hepatitis Alliance.

The 63rd World Health Assembly will take place in Geneva from 17 May until 21 May, 2010.

• WHD press release, via Hepatitis Australia (21 April 2010).

Nobel winner’s Hawaiian liver cancer awareness USA – Nobel Prize winner and cancer expert Dr Baruch Blumberg, is participating in local events aimed at raising awareness about liver and other cancers prevalent in Hawaii. This effort is spearheaded by the Cancer Research Center of Hawaii and was made possible thanks to the foresight of the Weinman Foundation.

With a A$1.8 million investment the Weinman Foundation has created the Weinman Foundation Fund for Innovation at the Cancer Research Center of Hawaii.

“We are most grateful for this fund that will help bring fresh ideas and new knowledge to our State,” said Dr Michele Carbone, director, Cancer Research Center of Hawaii.”Ultimately our goal is to transform this leading-edge knowledge into improved treatments and therapies for the people of Hawaii and the world.”

Dr Blumberg is a Distinguished Scientist at Fox Chase Cancer Center and professor of medicine and anthropology at the University of Pennsylvania in Philadelphia. In 1976, he was awarded the Nobel Prize in medicine for the discovery of the Hepatitis B Virus and later developed the first vaccine for Hepatitis B, a preexisting condition that can lead to liver cancer.

Hawaii has the highest incidence of liver cancer in the nation.

“We are delighted to welcome Nobel Laureate, Dr Baruch Blumberg as the inaugural Weinman Foundation Innovator in Cancer Research,” said Weinman.” His research has transformed the way we approach the prevention and treatment of liver cancer, and has literally saved millions of lives around the world.”

As part of the effort to bring awareness and improve opportunities for collaboration to address liver cancer in Hawaii, Dr Blumberg is giving a lecture to the medical community. This lecture is co-sponsored by The Queen’s Medical Center and the Cancer Center with financial support from the American Cancer Society.

• Abridged from http://tinyurl.com/2666ho3 (11 Mar 2010).

6 www.hep.org.au

news promotions EU researchers build 3D virtual liver France – European researchers have developed a virtual liver intended to improve the treatment of patients with diseases such as liver cancer and cirrhosis of the liver. It is based on software that can generate a three-dimensional image of a patient’s liver and allow it to be shared by experts in different geographical locations. Until now, liver surgery has been based on a model of the liver dating from 1957.

The software provides doctors with detailed information on the shape of the patient’s liver and the location of blood vessels in the organ. These details should lead to an increase in the number of patients who are considered eligible for surgery and help doctors to plan operations.

The 3D modelling software reveals that up to 50% of patients have a liver structure that differs markedly from that of the old model.

Two surgical simulators also allow surgeons to practise the planned surgery on the virtual liver before operating on the patient. The simulators mimic the texture and resistance of liver tissue, and users comment that it is hard to tell the difference between the simulator images and photographs of surgery. The simulators can also be used to train surgeons.

The project partners from France, Germany and Norway, are now working to bring their new technologies to the market and implement their new system in hospitals.

The project partners have already made improvements to the software and made it freely available on the Internet.

• Abridged from http://tinyurl.com/ya6gcpr (22 Jan 2010).

Four brand new hep C resources hit the streets

These four bookets are produced by Hepatitis Australia and are distributed via the various state and territory hepatitis organisations.

For free copies, phone the Hepatitis Helpline (see page 2). For bulk copies, please use our faxback order form: http://tinyurl.com/2gx6hrc The Hep Review Edition 69 June 2010 7

news Insite injecting centre to remain open

US campaign to dispel hepatitis stigma needed

Canada – British Columbia’s Court of Appeal rejected the Canadian government’s attempt to shut down the first safe injecting site in North America.

USA – Health officials need to initiate an AIDStype public awareness campaign to dispel the stigma of hepatitis B and hepatitis C, a report said.

The facility, called Insite, has operated since 2003 under a constitutional exemption to the federal Controlled Drugs and Substances Act. As the exemption was due to expire, Insite successfully obtained a permanent exemption, which the Conservative government challenged.

The report by the US Institute of Medicine said chronic hepatitis B and C cause thousands of cases of liver cancer, liver disease and death each year in the United States, taking the heaviest toll among Asians, Pacific Islanders and AfricanAmericans. These infections account for nearly half of the liver transplants performed annually.

Justice Carol Huddart wrote in her decision, “What is at issue is the provincially-authorised supervision of the injection of illegally-obtained heroin to prevent health problems associated with its self-injection. Like palliative care, it is a form of harm reduction with benefits for both the patient and the community.”

Madam Justice Anne Rowles added, “I doubt that the accuracy of the assertion that the operation of Insite is controversial in a policy sense. In this province, there is no longer any serious debate about the need for Insite as a health care facility.”

Two of the three judges supported Insite’s continued exemption.

One of the arguments submitted by the Canadian government was that to maintain the exemption would “seriously impair Canada’s ability to meet its international treaty obligations”.

Justice Huddart interpreted the argument “to be founded on a view that Insite’s provision of services somehow approves of or promotes drug use”. She noted it was “particularly difficult to understand, given the establishment of 45 sites where a supervised injection service is provided in other countries and that some of them provided the model for Insite.”

• Abridged from http://tinyurl.com/23o3qlh (19 Jan 2010).

8 www.hep.org.au

Committee chairman R. Palmer Beasley, a professor of epidemiology and disease control at the University of Texas School of Public Health in Houston, says resources and efforts to contain the viruses that cause hepatitis B and C lag behind those directed at other infectious diseases of similar impact to public health.

Beasley state that although hepatitis B and C are preventable, the rates of infection have not declined over the past several years, underscoring the conclusion that we have allowed gaps in screening, prevention and treatment to go unchecked.

“This report outlines the additional resources and actions needed to reduce the unacceptably high burden of liver disease and cancer associated with these viruses.”

The Institute of Medicine provides independent, objective, evidence-based advice to policy makers, health professionals, the private sector and the public.

• Abridged from http://tinyurl.com/2e3hyrx (11 Jan 2010).

Doctor’s note needed to attend church USA – Doctor’s notes may be needed to get out of school or work. But what about a doctor’s note to get back into church? One Tennessee woman needed one after being diagnosed with a disease.

The 64-year-old was diagnosed with hep C last month. She said she had nowhere to turn, except the front door at Grays Point Baptist Church where two church Deacons brought bad news.

“They told me if I wanted to come back to church that I had to have a note before I could come back in the doors,” said Brewer. “They said I was contagious, and that I would give it to everyone in my church.”

In a conversation with News Channel 5, Preacher James Humphrey spoke about his genuine concern for Betty and his congregation of 80.

“My duty to the church is to look out for the welfare of that congregation,” said Humphrey.

“I was crying on my couch because it hurt me. I love my church, and I feel lost if I don’t go to church,” said Brewer.

Health Officials reaffirmed that hep C is not contagious. It’s only spread through blood to blood contact like needles.

“There’s no reason whatsoever that people should be excluded from regular daily activities,” said State Epidemiologist Tim Jones.

Betty isn’t sure about going back to Grays Point just yet. Even though she got the doctor’s note to return to church, she’s holding her own services at home.

Church officials said they’re dedicated to Betty and have even spent years driving her to and from service.

The pastor said Betty is welcome at church as long as she has a doctor’s note ensuring that the rest of the congregation isn’t in danger.

• Abridged from http://tinyurl.com/2b28wav (2 Mar 2010).

news Employee says he was fired because of hep C Canada – Was it was poor health or a poor work ethic that caused a man to lose his job as a seasonal maintenance worker at Lake Okanagan Resort? This question will be investigated at a British Columbia Human Rights Tribunal hearing.

Joseph Rodrigue Vallee claims he was fired because he has hep C, which made his co-workers so uncomfortable that they began putting their coffee cups in Ziploc bags.

The resort, meanwhile, claims he said he was available for full-time work when he was hired on 18 March 2009, but never worked more than 40 hours in a two-week period.

Vallee alleges he was fired because of his physical disability, even though he told the company when he was hired that he would only be available two or three days per week because of his health problems.

He claims his foreman told him that other employees were “afraid of catching my hep C.” The complainant also says co-workers, in addition to wrapping their coffee cups, were “telling me not to touch anything they would touch.”

A resort spokesman said Vallee was hired on the understanding that he was available for full-time work. In an unsigned letter, ostensibly penned on 10 June, the company’s human resources manager writes that Vallee’s foreman told her that Vallee “had medical issues and could not be relied upon to report for scheduled shifts.”

In one 10-day period, the letter continues, Vallee “had not shown up for a single shift. He also had not bothered to call his supervisor to let him know he wasn’t coming in for work.”

If the tribunal rules in Vallee’s favour, it can order a range of remedies, including financial compensation for lost wages.

• Abridged from http://tinyurl.com/2evudas (27 Feb 2010).

Hep C is not transmitted via social contact. It is a blood borne virus and is transmitted when the blood of one person with hep C gets into the bloodstream of another person.

For more information, see http://tinyurl.com/2b7389x The Hep Review Edition 69 June 2010 9

news Mosques help raise UK hep C awareness

NSP in Tajikistan prisons

UK – In a unique collaboration, a team from the Royal London Hospital in east ­London – led by Graham ­Foster, a professor of hepatology and a leading authority on viral liver disease – five years ago embarked on a mass viral hepatitis screening program of healthy people of south Asian origin in mosques and community centres.

Tajikistan – Needle and syringe programs (NSP) in prisons proved their effectiveness by reducing the risk of contamination with HIV and hep C among imprisoned injecting drug users who share needles and syringes. The experience of countries which introduced prison NSP, shows the programs are safe for staff and prisoners, and promote decreases in both risky behaviours and transmission of blood borne diseases.

Foster found that UK Pakistanis with hepatitis were usually infected while on visits to Pakistan – often through poor healthcare practices such as the r­ e-use of needles by doctors administering injections, vaccinations and blood transfusions.

Considering the importance and the need to introduce NSP in prisons, the Tajikistan Department of Correction Affairs initiated a rapid assessment in several penitentiary facilities in November 2009 to identify a pilot prison for NSP.

Shahid Mursaleen, spokesman for ­Minhaj-ulQuran, praised Foster’s team for the way they reached out to local people. “In his Friday sermons, our imam included information about hepatitis and has encouraged people to get tested,” M ­ ursaleen says.

In January 2010, the Department of Correction Affairs signed a decree on piloting NSP in prisons in the Republic of Tajikistan. The first stage included increasing awareness on the urgency of NSP implementation in prisons.

Foster voiced concern about the lack of action on the part of the government. It costs about A$166,449 for a liver transplant with ongoing care costs of A$8,300 to A$17,000 a year for every subsequent year of survival, while it costs just A$5,000 to A$6,600 to treat and potentially cure someone of hep C before they develop cirrhosis.

A Department of Health spokesman said it was up to primary care trusts to decide on their priorities and that a national clinical director in liver disease had been appointed. Although the government has an action plan, it does not include targets.

But Foster says the government needs to make testing for and treating hep C a t­arget for GPs with money attached. “They have produced leaflets targeting the south Asian community but at this stage we need a [strategic] sledgehammer approach, nothing less will solve the problem.”

• Abridged from http://tinyurl.com/yk58gcr (10 Feb 2010).

10 www.hep.org.au

Two two-day training on blood borne virus prevention focusing on harm reduction for 20 staff in the pilot facility were organised. A number of education sessions for prisoners are scheduled in the near future.

• Abridged from http://tinyurl.com/23elvst (5 Mar 2010).

Red-shirts blood high in hep Thailand – Lab tests at three different hospitals all show that blood used in the red-shirt protest and thrown at Government House and the Prime Minister’s residence carried the hep B and C viruses, Vajira Hospital’s director Chaiwan Charoenchokthavee said yesterday.

news

Irish aid project confirms high Vietnamese hep B

Ireland – A major aid initiative, backed by the Irish government, has helped to confirm an unusually high rate of hep B in Vietnam.

Chaiwan added that the information had been kept confidential until a group of doctors, led by Dr Kusol Prawitpaiboon, publicly voiced concern about the possible spread of disease.

The state-of-the-art diagnostic facility, developed by the Ireland-Vietnam Blood borne Virus Initiative (IVVI), will be formally opened at the National Institute of Hygiene and Epidemiology (NIHE) in Hanoi on St Patrick’s Day.

In March, thousands of red-shirt demonstrators gave blood to the cause of forcing the government to dissolve the House, despite warnings from various health authorities.

The project is the brainchild of Prof William Hall, professor of virology at University College Dublin, who, along with Prof Nguyen Tran Hien of NIHE, is IVVI co-director”.

A 106-strong team from Vajira Hospital spent March 17 and 18 cleaning up after the blood protest in a bid to prevent the spread of disease.

The blood collected from the protest sites was disposed of as infected waste in line with prescribed procedures, Chaiwan said.

“The IVVI programme has been designed to increase capacity and infrastructure in viral diagnostics in Vietnam. The focus of the program is on blood borne viruses which include HIV, and heps B and C. However, it is anticipated that once completed this will allow the development of capacity to rapidly respond to all viral diseases,” Prof Hall told The Irish Times.

“We tested the blood to determine the risk faced by our staff,” Chaiwan said. “Actually, we kept the results secret when we sent the sample to the other two hospitals.”

Chaiwan said the lab results were hardly a surprise, because there were bound to have been some people infected by the hep B and C viruses, in the big crowd.

• Abridged from http://tinyurl.com/24m7gwd (6 April 2010).

Now in its third year, the project is gathering blood specimens and demographic information from different parts of Vietnam.

It is focusing on people thought to be in “atrisk” groups, such as commercial sex workers, injecting drug users and dialysis patients.

Results so far show a very high prevalence of blood borne viral infections in northern Vietnam.

More than 10% of injecting drug users and commercial sex workers in Hanoi tested positive for hep B, which “demonstrates extraordinarily high levels of active infection in the general population,” Prof Hall said.

• Abridged from http://tinyurl.com/27uec4r (16 Mar 2010).

The Hep Review Edition 69 June 2010 11

USA – Lobbyists were on Capitol Hill recently, campaigning for newly introduced congressional legislation that would eventually ban invasive experiments on chimpanzees.

According to Dr Hope Ferdowsian, director of research policy at the nonprofit Physicians Committee for Responsible Medicine, the Great Ape Protection Act, or GAPA, “would ban all invasive and harmful research on chimpanzees in American laboratories.” It would also “release federally-owned chimpanzees, about half of the thousand chimpanzees that are languishing in American laboratories today, to sanctuaries.”

But the legislation is not to everyone’s liking. John VandeBerg, director of the Southwest National Primate Research Center in San Antonio, Texas, says the use of chimpanzees in biomedical research is essential. He argues that there are no other animals that can be infected with heps B or C. “So in order to develop drugs to treat people who have heps B or C, we need to use chimpanzees to determine if the drugs can reduce the level of viruses in their blood and in their livers,” says VandeBerg.

While he acknowledges that there is much to be learned from alternative research methods like cell culture – a process by which cells are taken from a living organism and grown under controlled conditions – VandeBerg says they have learned a lot more from research on chimpanzees.

The Great Ape Protection Act is currently making its way through the US Congress. It has more than 140 co-sponsors in the House of Representatives.

Until the measure becomes law, medical testing on chimpanzees will continue to be a highly divisive, and hotly debated, issue.

• Abridged from http://tinyurl.com/ykbqdo6 (16 Feb 2010).

Well known US hepatitis advocate, Pamela Anderson, supports the chimp research ban. For more info, see http://tinyurl. com/29q5ee2

12 www.hep.org.au

Image courtesy of Google Images

news US considers chimp experiments ban

Doctor investigated over hep C cases Australia – A Melbourne doctor is being investigated over the infection of 12 patients with hep C from his own blood.

Police are investigating how at least a dozen of the anaesthetist’s patients contracted a strain of the blood borne disease that is a perfect match to his DNA, the Herald Sun reports.

Health department investigators became alarmed after noticing a cluster of hep C cases among pregnant women. The exact nature of how the disease spread from the doctor to his patients is yet to be determined; however, it is typically passed through contaminated syringes or needlestick injuries.

The Herald Sun believes the doctor had stopped working at the clinic at least several weeks before the Medical Practitioners Board suspended his registration.

Department of Human Services investigators have interviewed the infected patients, and also staff at the clinic where the man worked up until his suspension.

• Abridged from http://tinyurl.com/yze5m9z (9 April 2010).

Law company Slater & Gordon revealed it was representing 17 women who allege they were infected by Dr James Latham Peters while he worked at Croydon Day Surgery.

The Age revealed Dr Peters received a suspended jail sentence for forging more than 100 prescriptions for the drug pethidine in 1996. The Medical Practitioners Board of Victoria also faces a lawsuit from the women.

For more information, visit http://tinyurl. com/25bhmwn

Blood Service goes automated Australia – In 2010, the Blood Service is introducing a fully automated testing system for the simultaneous detection of HIV, HCV and HBV. The change is now possible due to the high level of automation offered by new testing platforms and is consistent with international best practice.

It will significantly improve laboratory process control and will provide the opportunity to further improve the quality and safety of the Australian blood supply, benefiting both blood product recipients and blood donors.

• Abridged from Blood Service Med e-News (Jan 2010).

Social research conference Australia – HIV and hep C researchers and workers recently gathered at the University of NSW for an important annual conference.

The Evolving Knowledge and Practice: 11th Social Research Conference on HIV, Hepatitis C and Related Diseases took place on 8-9 April 2010 and was attended by delegates from across Australia and New Zealand.

news Hepatitis Awareness Week 2010 Australia – Hepatitis Awareness Week was celebrated around Australian between the 17th – 23rd of May, 2010.

World Hepatitis Day was launched at Federation Square in Melbourne on the 19th of May, by Angry Anderson with a “Rock for Hepatitis” concert featuring Angry Anderson & Band, Calling All Cars, Fastrack, The Gun Street Girls, Red Ink & The Demon Parade.

Other activities that took place around Australia included: Hep C Community Info Night, Street Shot photo essay competition and launch, YZzzz Up on Hepatitis workshops and the Albion Park Out of Hours project (in NSW).

Love your Liver Lunches; Street Shot photo essay competition and launch; and Hep B & C Updates (in Victoria).

Lunch with your Liver Nurse; information days; Circus in the park @ Nambour Hospital; Picnic in the Park &Love your Liver lunches (in Queensland).

• Hepatitis NSW. For a full rundown of 2010 activities, visit http://tinyurl.com/22mclf6 and www.hepatitisaustralia.com

The conference program covered many topics and is viewable by visiting http://tinyurl. com/2fum2oy • Hepatitis NSW.

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The Hep Review Edition 69 June 2010 13

news National strategies endorsed Australia – Hepatitis Australia congratulates Australia’s Health Ministers for their endorsement of the latest hep C, and first hep B national strategies at the Australian Health Ministers’ Conference, and is now calling on all levels of government to ensure their immediate implementation.

“The first national hepatitis B strategy provides the framework for ensuring that the estimated 165,000 people living with chronic hep B will be provided with the information and treatment services they need which have been lacking to date,” said Helen Tyrrell, CEO, Hepatitis Australia.

The third national hep C strategy reiterates many of the priorities previously articulated in the first and second hep C national strategies; priorities that were not met. Far more attention needs to be given to the implementation of the current strategies, and progress needs to be monitored closely.

“National strategies in the end are just pieces of paper; the serious work begins with the rolling out of the strategies across the nation.

Unfortunately, both the first and second national hep C strategies were not fully implemented; we can’t let this happen again with either the third national hep C strategy, or the first national hepatitis B strategy,” said Tyrrell.

“We want to be in a position in three years’ time where we can congratulate the federal and state governments for their leadership in not merely the endorsement, but the implementation of both the hepatitis B and C national strategies. We want new hepatitis B and C infections to be rare, and all people with existing chronic infections to have access to the information and clinical services they need to improve the quality of their lives and prevent premature deaths from viral hepatitis.”

The burden of disease from viral hepatitis is growing each year, and the strategies clearly articulate what is needed within Australia in order to turn this situation around. It is going to require ongoing commitment and funding from both federal and state governments to make sure the goals of the national strategies are achieved.

• Hepatitis Australia press release (27 April 2010).

14 www.hep.org.au

Hepatitis NSW and Awareness Week Australia – Hepatitis NSW recently celebrated World Hepatitis Day (19th May, 2010) and assisted in a number of exciting events and activities for National Hepatitis Awareness Week (17-23rd of May, 2010).

Running for its second year, the Hepatitis NSW Community Grants Program again generated a wide range of innovative ideas for health promotion from non-Government organisations across the state.

Twenty-nine activities were funded and included number of arts and music awareness raising programs, information stalls and update events; and community language information days including information in Arabic, Korean, Vietnamese, Cantonese/Mandarin and Assyrian.

The activities that took place during Awareness Week aimed to involve many different community groups including young people, Aboriginal communities, people who inject drugs, and people from culturally and linguistically diverse backgrounds.

Hepatitis NSW staff provided media kits, specialised capacity building workshops and education sessions to further raise the profile of these vibrant community events and staff also attended and offered support at a number of local activities.

Our positive speakers program provided the all-important personal face of people living with hepatitis in the national media campaign.

The launch of Hepatitis NSWs’ art and photoessay competition, StreetShot was scheduled to coincide with National Hepatitis Awareness Week; with winning entries exhibited on opening night at CarriageWorks contemporary arts space on Tuesday 18th May. This year, 12 services participated in the competition, with the winning entry coming from Gungahlin Youth Centre.

• Hepatitis NSW

Boost for NSW needle program Australia – The NSW Health Department is aiming to raise the number of needle packs, called Fitpacks, that are distributed by pharmacies. To do this, they are increasing the number of pharmacies that participate in its Needle and Syringe Program (NSP) and has employed a special field officer until 2012 to coordinate a pilot program to support the scheme.

A spokeswoman for the NSW Health Department said a 2009 report into needle exchange programs across Australia found that they had averted 96,667 new hep C infections in the past decade but it was still not enough.

“Given the cost of hep C to individuals and the health system, there is an imperative to reduce new infections. The report notes that the volume of sterile needles and syringes currently distributed via NSPs in NSW is not sufficient to drive down the rate of hep C infection,” she said.

news

Q&A:

Can I get a second chance at the subsidised hep C combination treatment?

In a nutshell, yes, you can access subsidised hep C treatment if you have previously tried it but it didn’t work.

As reported in Edition 63, page 11, people with chronic hep C who didn’t respond to previous treatment, or relapsed (the virus came back) after previous treatment can now be retreated with combination treatment.

• Hepatitis NSW For more information, please contact the Hepatitis Helpline (details on page 3).

• Abridged from http://tinyurl.com/2dpjt8w (1 Mar 2010).

The number of fitpacks distributed via pharmacies across NSW has decreased by 54% over the last five years. Initiatives such as the NSW Health scheme, above, are vital if the proven benefits of Australia’s NSP scheme are to be realised.

The Hep Review Edition 69 June 2010 15

my story

Paul’s story: twenty-five years on and twenty weeks to go

I

had hep C for 20 years before I did 48 weeks of combination therapy in 2005. I took it on not thinking too much about the side effects.

“I’m doing this treatment, I’m not going to worry too much about what happens, I’m just going to do it,” I told myself.

The virus was undetectable in four weeks and I didn’t get any flu-like symptoms or any headaches; the worst side effects I had were constant itching and a subtle downwards mood swing.

I treated the itching with a few different things before I discovered Pinetarsol bath oil. The mood swing tended towards reclusiveness and was harder to notice. I wasn’t doing the things that I usually love to do like spending time with my daughter or surfing.

I do still have some fond memories of my year with combination treatment. I pushed my reclusiveness aside to sail to Hobart on the James Craig tall ship and I have exhilarating memories that will last a lifetime. Treatment also coincided with a time of change. It was linked to the idea that if I got rid of the virus, it would be easier to find someone. Indeed, not long after treatment finished, I met my new partner.

16 www.hep.org.au

Photographer unknown (James Craig crew mate)

About two weeks after my last ribavirin pills, the specialist rang me at work and told me I had relapsed. I sat there, got teary for a minute. I started to tell people, made a few calls, told a few people at work. It was a bit of a slap in the face, but after a few days I was over it. I had given it a shot.

It’s been four years and I find myself on treatment again. It’s not standard treatment as I am on a 48 weeks triple therapy clinical trial. All seems to be currently going well. It plays with the emotions a bit – but that’s nothing new compared to last time. The big difference this time is the wonderful support I get from my wife. Add to this a supportive workplace and I don’t think I can complain too much.

People’s perceptions of treatment are sometimes out of whack with the reality. I would definitely encourage people to give it a go. Find out about it and don’t go in blindly but give it a go. The potential rewards of treatment far outweigh doing nothing.

Paul, NSW

feature

Obesity is now more deadly than smoking Writing in the Sydney Morning Herald, Amy Corderoy looks at Australia’s overweight epidemic; an interesting read given for people with hep C that being overweight is considered a risk factor for worse outcome of their hep C.

O

besity has overtaken smoking as the leading cause of premature death and illness in Australia, as experts say the federal government is woefully unprepared for a tsunami of weight-related health problems.

Fat was rapidly becoming the biggest public health challenge Australia had to face, said the president of the Public Health Association of Australia, Mike Daube, who is also the deputy chairman of the government’s National Preventative Health Taskforce.

New figures from Western Australia, which are expected to be echoed across Australia, show the contribution of excessive weight to ill health has more than doubled in just six years, and by 2006 accounted for 9% of all disease. Tobacco’s role has fallen by a quarter, and now causes 6% of illness and early death.

“The obesity crisis is not on its way - it is already here,” Professor Daube said. “What we have done about obesity is not working. This issue needs concentrated and determined action.”

“Our political leaders should be considering not only improvements to the hospital system but how to stop literally hundreds of thousands of preventable deaths,” he said.

The Prime Minister, Kevin Rudd, has signalled he will use the COAG meeting to push the states to accept his hospital reform plan. Critics have said it might not work well for complex diseases such as those caused by obesity, which is linked to increased rates of diabetes, heart disease and cancer.

More than 60% of Australian adults and one in four children are overweight or obese. In 2008 the cost of obesity in NSW alone was $19 billion, according to NSW Health.

Ian Olver, chairman of the Australian Chronic Disease Prevention Alliance, criticised the

government for its lack of action on the taskforce’s recommendations last year.

Professor Olver said governments had acted strongly against tobacco but had failed to tackle obesity adequately.

“They have access to evidence-based policy and they need to act on it,” he said.

The leader of the study, Victoria Hoad, said she expected the rest of the country to reflect the findings in Western Australia.

“Smoking traditionally has been the leading preventable cause of disease but people have been getting fatter and quitting smoking,” she said.

Timothy Gill, from the Boden Institute at Sydney University, said people in their 30s and 40s did not understand they faced health problems caused by obesity that in the past were more commonly seen in people in their 60s and 70s.

“There has been a degree of normalisation of the problems,” he said, adding that “It took 50 years to lower the rates of tobacco use in Australia but we don’t have that much time to deal with obesity.”

A spokesman for the Health Minister, Nicola Roxon, said that the government was investing $872 million in preventive health.

• Abridged from http://tinyurl.com/yfscut4 (9 April 2010).

Obesity is listed as a cirrhosis risk factor in the two Australian texts: Hepatitis C: an expanding epidemic, and Hepatitis C, other liver disorders and liver health. Also, a study has looked at impact of obesity on hep C treatment; Charlton MR, et. al. Hepatology 2006. 43(6):1177-86. Phone the Hepatitis Helpline for more information.

The Hep Review Edition 69 June 2010 17

feature

Men get health a Following our article about men’s hep C health promotion in our previous edition, we carry an article by Claire Donnelly on a novel UK project that brings men’s health services to the pub.

W

hen Tim Hall strolls the few streets to his local after work, he is usually looking for nothing more taxing than a few pints and a relaxing chat with his mates.

But today, propping up the bar at The Traveller’s Rest in Macclesfield, Cheshire, the 40-year-old cleaner has found a healthier option on offer.

Amid the booze and banter, he slips on a blood pressure cuff, ready for his first encounter with a health worker. As well as a confidential cholesterol, weight and blood sugar level check, he will also be offered advice about drinking, as part of a pioneering project to bring men’s health services to the place where many feel most relaxed – the pub.

Two pre-booked sessions, each offering 15 appointments and staffed by two health workers, are being held at the pub as a pilot.

Posters and mirrors with the scheme’s slogan, “Drink A Little Less, See A Better You”, are on the walls, alongside notices about darts matches and karaoke nights. Hall and his fellow regulars are being offered discounted soft drinks, shandies and even hot toast to limit the amount of alcohol they drink.

Hall, who is married and has a 13-year-old daughter, says: “This isn’t exactly my normal night out, but I suppose that’s the point – it’s making you think. Like a lot of men, I can’t tell you the last time I went to the doctor’s. I’ve wanted to get my cholesterol checked for a while, but I wouldn’t make an appointment with my GP about it. It’s just the way men are. It’s easier to talk to someone here. It feels a lot less intimidating.”

Devised by the Cheshire and Merseyside Public Health Network (ChaMPs), and backed by regional brewery Robinsons, which is allowing its premises to be used and discounting non-

18 www.hep.org.au

alcoholic drinks, the initiative highlights the needs of what the network sees as an overlooked group of drinkers: working-class men aged 35-55.

The network’s research found examples of men in this group who consume between five to 10 pints a day, but who are unaware of the health risks.

“This is a long-term problem, and something we have to address now,” says Heather Grimbaldeston, the region’s director of public health. “Rather than telling people not to go to the pub and not to drink at all, we wanted to modify their behaviour in there. If people swap even one pint for a soft drink a night, that can mean a huge reduction of their weekly units.”

Nationally, the UK National Health Service spends A$5 billion a year addressing our doomed love affair with drink. In Cheshire, alcohol-related illness and injuries have cost the region A$52.4 million this year alone – A$166 per person. With this in mind, ChaMPs has been looking for ways to promote safer drinking. If this works, it hopes to get other local pubs involved, and even to roll it out nationally.

As he waits for the results of his tests, Hall admits to feeling a little nervous. “I’m just hoping I don’t get any nasty surprises,” he laughs. “I like a drink like anyone does, so you do wonder how it affects your health. It’s something we all need to be aware of.”

• By Claire Donnelly. Abridged from http:// tinyurl.com/28vk9fb (9 Dec 2009).

The Hep Review Edition 69 June 2010 19

Image by nictuck2, courtesy of www.flickr.com

advice on tap

feature

feature

Hepatitis B: a poor cousin knock Australia has an effective hep B vaccination program and many people may ask “What’s the fuss about hep B?” Writing for The Hep Review, Adrian Rigg takes a closer look at what’s involved.

T

he hepatitis B virus was discovered in the 1960s during a study on patients who had been given blood transfusions. Although “type B hepatitis” had been recognised before that, it was not known what caused it. The discovery of the virus allowed an effective vaccine to be developed by 1982.

Hep B is a virus that infects human liver cells and then reproduces itself; it penetrates a liver cell and causes the cell to produce copies of the virus, which are released into the bloodstream. As with hep C, hep B can cause liver damage; if undiagnosed and untreated, hep B can lead to cirrhosis and eventually liver failure or liver cancer.

Acute hep B infection refers to the initial six months of infection. Symptoms of acute hep B include jaundice, general fatigue, lack of appetite and nausea, but some people don’t experience any symptoms. Most adults infected with hep B will clear the virus and recover completely, and some may never know they had it.

People whose immune systems are unable to clear the virus experience chronic hep B; these people will then be infected for life. Some with chronic hep B may have no symptoms and can be unaware of infection; others experience liver pain, tiredness, general aches and nausea.

20 www.hep.org.au

How hep B affects people The age of a person at the time of infection is very significant to the outcome of hep B. People infected at birth do not usually become ill until well into adulthood; they may not show any signs of infection, and this is why testing is important for people who have lived in countries where hep B is endemic. Most people infected at birth will experience chronic hep B. People who are infected as teenagers or adults may experience some of the symptoms of acute hep B, but most will clear the virus and avoid chronic infection. Approximately 5% of adults infected will develop chronic hep B. Anyone who has been infected and cleared hep B will then be immune against reinfection.

feature

king on our health system’s door Transmission

Cultural groups and at-risk groups

Hep B can be spread by body fluids (including blood, semen, vaginal fluid, saliva and breast milk) getting into another person’s body. The virus has to enter the body through broken skin or a mucous membrane; it is not spread by contact such as kissing, by sharing food or through coughing and sneezing. In countries like Australia, it is most commonly contracted through sexual contact, sharing injecting equipment or accidental needlestick injury. It can also be spread by biting and other circumstances where skin is broken, or sharing items like toothbrushes and razors where blood and body fluids can be present. The hep B virus can live outside the body for about a week, and is still infectious during this time.

Most people with hep B in Australia were born elsewhere. Africa, Central and South America, the Mediterranean and Eastern Europe who have populations with a higher prevalence of hep B infection. Hep B is endemic in China and other parts of North-East and South-East Asia and the Pacific; the World Health Organization estimates that more than 10% of the adult world population has chronic hep B, most of these being infected with hep B when they were babies or children.

The most common method of transmission around the world occurs from mother to child during birth; this can happen if the baby is exposed to blood or other body fluids.

Testing Blood tests can detect hep B by measuring antigens (a foreign substance in the body, i.e. the virus) and antibodies (the body’s response to a virus or vaccine). Tests for hep B can measure: • Hep B surface antigen – if a person has the hep B virus in their body • Hep B surface antibody – if a person is immune to hep B, either through having cleared the virus or through vaccination • Hep B e antigen – a marker of the virus multiplying • Hep B e antibody – if the person’s immune system is actively fighting the virus • Hep B core antibody – if a person has ever had hep B, whether the virus is ongoing • Hep B virus DNA (viral load) – measure the amount of virus in the blood Blood tests that show how well the liver is functioning are also used to monitor the ongoing health of people with hep B. Treatment During the acute phase, the immune system fights to clear the virus and is usually successful. Treatment is available for chronic hep B, but is not always necessary. People with chronic hep B who have no liver damage should have six-monthly check-ups to ensure their liver remains healthy; people with liver damage may be recommended for treatment.

The Hep Review Edition 69 June 2010 21

feature People with hep B may experience four distinct phases of infection: 1) immune tolerant, 2) immune clearance, 3) immune control, and/or 4) immune escape. Only people in the second and fourth phases are considered for hep B treatment.

There are two types of treatment: weekly injections or daily tablets.

some people, as well as the long wait for initial appointments. He believes that more people would benefit from treatment if GPs were able to treat hep B as part of their patients’ overall health.

“In Australia we estimate that perhaps 2% of people with hep B are receiving antiviral treatment,” says Dr Cowie. “More people could benefit from treatment if alternative models of care were explored.”

Dr Cowie says that community-based care would make treatment more accessible, and also more effective. The First National Hepatitis B Strategy, recently endorsed by the Commonwealth and all states and territories addresses this issue, as well The second option involves tablets, taken daily for at as ways to reduce stigma and discrimination, and least a year; longer-term treatment is usually needed, make prevention and treatment of hep B a part of and many people take the tablets for years. There broader health plans. are a variety of tablets which can be prescribed, Taking care of yourself depending on test results and liver condition. The main concern with tablets is the the virus mutating People with hep B can make changes to minimise and becoming resistant to the medication; if this the impact it has on their lives. Even small changes happens, the medication may be changed. can make a difference, for example: cutting down or cutting out alcohol; quitting smoking; eating These treatments work to prevent the hep B virus well to maintain a strong immune system and growing so that liver damage is minimised. Unlike good general health; and making time for rest and other organs the liver is able to repair itself, and treatment can give it a chance to regenerate; the aim relaxation. Complementary therapies may also help, but should be discussed with health care of treatment is to suppress the hep B virus. professionals to ensure they do not affect the liver or Deciding whether to have treatment for hep B interfere with treatment. hinges on clinical and personal issues and should be The effects of hep B are not only physical; one man made in consultation with a specialist. It should be living with hep B says that there are other issues that considered at a time of relative stability in life; this affect him. helps with adherence as well as making it easier to cope with any side effects.

“The biggest impact on my life is psychological,” Dr Benjamin Cowie, an infectious says the 35 year-old man, diagnosed with hep B during a regular check up with his GP. “My father diseases physician with the died from liver cancer two years ago. It’s always Victorian Infectious Diseases something I worry about.”

Service at the Royal Melbourne Hospital, He helps alleviate this by seeking information; says that the hospital or his GP referred him to a specialist, who provides clinic setting can be a answers and helps put hep B into perspective. barrier to treatment for Weekly injections of pegylated interferon are given, usually for 12 months; possible side effects are headaches, muscle aches, nausea, loss of appetite, fatigue, insomnia, mood swings and depression.

Images previous page, L-R, top to bottom by RezaG!, Coyote2024, kadavoor, Dominique Alyce, DavidDennisPhotos.com, lintmachine, Steffe, kuttibalu, jesse.millan, Rusty Stewart, Phototrope, See-ming Lee, all via www.flickr.com

22 www.hep.org.au

feature Vaccination There is a vaccination against hep B – a series of injections over six months. The vaccination is safe and there are usually no side-effects. It has been part of the universal vaccination program for children in Australia since 2000. Adults at risk of hep B should be vaccinated; if you’re not sure, a GP or health centre can test to find out if you are already immune. People considered at risk for hep B include health care workers, men who have sex with men, people with multiple sex partners, people who inject drugs, partners and families of people with hep B, Indigenous Australians, and people who travel to countries where hep B is endemic.

Anyone with hep C will be advised to be vaccinated against hep B, as coinfection can increase liver damage. Because they are blood borne viruses, it is possible to contract hep B and hep C in the same instance.

Levinia Crooks, Chief Executive Officer of the Australasian Society for HIV Medicine (ASHM), says that providing a vaccination program is essential for primary prevention, but does not address the needs of people who already have hep B. “We also need to deal with managing disease progression,” says Levinia. “This means targeting affected individuals and communities, following up all diagnoses, and screening for disease progression.”

Dr Cowie and Levinia agree that education about hep B is important: for affected communities, to empower them to take charge of the issues around hep B; and for health professionals, to assist them to target testing, and in appropriate management of patients.

• Adrian Rigg is a freelance health writer who regularly writes for The Hep Review. adrian.j.rigg@gmail.com

Images this spread, top to bottom, L-R, by puck90, Primeroz, hpk, Steffe, Dominique Alyce, Rusty Stewart, Rusty Stewart, Rusty Stewart, D G Butcher, Carol Mitchell, pierre pouliquin, My name’s axel, louisa_catlover, rAmmoRRison, docman, Julie70, all via www.flickr.com

The Hep Review Edition 69 June 2010 23

feature

Claire’s gone but a much thornier question remains The death of Claire Murray might well mark one of those rare times when a politician’s attempt to wriggle out of answering a tough question might actually lead to a better outcome for all, writes Chalpat Sonti in WA Today.

C

laire Murray, a mother-of-two and former heroin user, needed a second liver transplant when the first replacement failed due to drug use.

She was rejected due to that drug use, and her family approached politicians for help. Initially she was to go to New Zealand to see if a family member’s piece of liver could be transplanted into her, but she did not meet the criteria there either. So a hospital in Singapore offered her a last chance.

The Singapore operation was largely thanks to WA Health Minister Kim Hames, who agreed the Murray family should be lent $258,000, interestfree for two years, so the 24-year-old could have a second chance.

Dr Hames said he made this decision based on his medical background. Odd really, considering most doctors of my experience, and I’ve known hundreds as friends or family over the years, would have done exactly the opposite.

Indeed, a team of medical experts did so when refusing Ms Murray’s request for a second transplant in WA. Why Dr Hames chose to give her a second chance could smack more of not wanting to be seen with blood on his hands than any medical leaning. I’ll be charitable and say maybe his heart over-ruled his head.

His early use of the word “precedent” when talking about the floodgates opening for others was quickly downplayed by Premier Colin Barnett and later Dr Hames himself. You can bet others lining up for government largesse will be fobbed off faster than they can spell “precedent”.

They’ll simply be forced to resort to old-fashioned fund-raising or mortgaging the home or business, as most are now.

24 www.hep.org.au

In the manner of all politicians who’ve made a politically, and I would argue ethically, dodgy decisions, Dr Hames refused to talk about the status of the loan following Ms Murray’s death, and instead wanted to shift the focus on the thorny question of organ donation. So do the other politicians who promoted Ms Murray’s plight.

Three of them, from across the political divide, have proposed introducing a private members bill that would see WA switch to an opt-out organ donation system. Dr Hames agrees it needs to be debated.

Good on him. It might mean actually thinking like a doctor, making decisions with the head and a little heart tossed in, not the other way around.

Such a scheme would mean you are automatically a donor, substantiated on your driver’s licence, unless indicated otherwise.

Sounds fine, in theory. Bound to improve our, and Australia’s, miserable donation rate, which is about one-third of that of countries with opt-out systems. Maybe it will – but it’s a big maybe.

The country that is often cited as the model of donation virtue is Spain. They introduced an optout scheme about 30 years ago, and now have one of the highest rates of organ donation in the Western world.

But those who have examined Spain’s scheme argue that isn’t the reason why. Rather it was the decision about 10 years later, when rates were still wallowing, to focus on improving the bureaucratic barriers to donation.

They have a person in each hospital whose role is to ensure that as many organs as possible can be donated, and are donated.

A considered examination of various systems by UK health authorities recommended retaining an opt-in system, and also improving those barriers,

feature

That, authorities concluded, could increase the donation rate there by 50%, from a rate little better than Australia’s.

One of the little-known bits of fine print about Spanish organ donation is that the deceased person’s family must still agree [this is also the case in Australia, where even if the deceased gave prior consent to organ donation, his next of kin, can still override his decision].

No such requirement exists in Australia, yet donation rates are still one-third below that of Spain, and are about the same as the US, where opt-in remains.

Nationals MP Vince Catania, one of the MPs behind the proposed WA opt-out bill, recently told me that while it has yet to be drafted, with public input still being sought, his personal preference was for the family to have to approve.

I agree. I’m a donor but I remember telling my mother when I first registered. Though she worked in the medical profession, she was strongly opposed and told me that should she ever have to make the decision, she wouldn’t allow my organs to be donated.

After initially being taken aback, I could see her point of view. While life is for the living, and I’d like to help out, I wouldn’t want my family to do something they didn’t want to.

It’s by the by now anyway, with my partner agreeing to honour my wishes, if possible.

So, in this debate about organ donation, maybe it’s time to focus less on the law and more on

implementing already-proven, simple solutions.

After all, they don’t require state-based laws, or long lead-in times as debates rage in parliament, rightfully, over the question of whether opt-in or opt-out is fairer.

One problem, though. Those solutions require some money, a little patience, and the ability to better inform those people who would otherwise waver when deciding on donating the organ of a loved one (the refusal rate in Spain is under 20%).

Not merely some politician saying “here’s the law, we’ve done what we can, all will be well and if not, it’s not our fault”.

Headed straight for the “too hard” basket, do you reckon?

We might be back to the comfort of refusing to answer tough questions again.

• By Chalpat Sonti. Abridged from http://tinyurl. com/26t6klc (7 April 2010).

NB: An interesting online comment taken from the WA Today website... “There was speculation that her drug use was responsible for the demise of this graft which caused her to go into liver failure again – hence the need for a second transplant. When she came to us, we ran a series of blood tests to find out whether she had any inherent genetic disorder that would make her more likely to have blood clots. And as it turned out, [she did]. Of course that isn’t as good a story.” Dr Lui Hock Foong, liver transplant physician, Mt Elizabeth Hospital, WA. Also see, “The most precious gift”, page 58.

The Hep Review Edition 69 June 2010 25

Composite image by Paul Harvey, thorns via www.image.google.com

including donor identification and referral, donor co-ordination and organ retrieval arrangements.

my story Susan’s story: to treat or not to treat?

He told me that hep C is not as harmless as I think it is. It’s an opportunistic virus that could wreak havoc with my body given the chance. He suggested that if I had the chance to get the virus out of my body then I should consider taking it.

Questions that couldn’t be directly answered filled my mind: How will I react to treatment?

Will I get ill or be reasonably well during those 12 months? Will I cope mentally seeing as I have Bipolar Affective Disorder (BP)? Will I lose too much weight and have to stop treatment? I’m on the low end of my recommended ideal weight so this was a real concern to me and the Liver Clinic at Royal Perth Hospital.

I do see his point and would consider doing it in a couple of years when I will be ready. It’s back to square one for me. At least I know where I stand a little better than I did three years ago.

My preparation for treatment lasted two and a half years. I spoke with psychiatrists, dieticians and counsellors to make sure I was in the best possible state to commence treatment.

The final step in my preparation for treatment was a test to determine the level of damage my liver had sustained during my 22 years of living with the virus. In November 2008 the results of my test came back. In the range of zero to four, zero being completely healthy and four being seriously damaged, my score came back as practically zero It was the lowest score my doctor at the liver clinic had ever seen.

I was told that basically it meant my immune system didn’t recognise the virus as being a threat and that I was very healthy.

The upshot was that I could delay having treatment for years or choose to live with the virus for the rest of my life and I only needed my LFT’s and an abdominal ultrasound done every couple of years.

I was in shock. The only way I can describe how I felt is this. It was like I’d prepared for my wedding day for the last two and a half years only to have the groom walk out on me on my wedding day.

Eventually I felt relieved and blessed and put having treatment out of my mind.

I recently started seeing a psychiatrist again to help me stabilise and manage my BP as it had gotten out of control again. My doctor sees many patients on treatment and helps manage their mental health during their journey.

26 www.hep.org.au

What really has sealed the deal for me is my recent diagnosis of Rheumatoid Arthritis (RA), another inflammatory, immune disease. This new diagnosis adds more questions in my mind when considering treatment for hep C: Will I be able to continue taking pain medication? How will treatment affect my RA? Will treatment make me sicker than I normally would have been? Will it interfere with my arthritis medication?

RA will be a painful part of my life from here on in as there is no “cure” for it. If I can have a shot at becoming hep C free and therefore have one less inflammatory, immune disease then why not?

It might even help me to cope with RA better and to slow the progress of the disease.

Hep C treatment was not on my “things-to-do list” but sometimes life changes that list for you.

So now, with hope and prayers, I’m beginning to prepare for treatment again.

Susan Leisavnieks, WA We wonder whether many people are advised against having hep C treatment on the basis that their liver is ‘pretty good’?

It is interesting given that evidence points to better response rates in people who undertake treatment at an earlier age. Ed.

Image by space_monkey, courtesy of www.flickr.com

O

n the 16th February 2009, I was supposed to start treatment for my chronic hep C. I am genotype-one so I was looking at a long haul of 12 months of treatment and I wasn’t looking forward to it.

obituary

S

imply put, Margaret Moth made an impression. Given her jet-black hair, thick black eyeliner, black clothes and combat boots (which she often slept in while on assignment), people didn’t always know what to think upon meeting her. She was quirky, the sort who excused herself from a social gathering by saying she had to wash her socks. And she was fearless, the kind of woman who not only kept the camera rolling while under fire, but zoomed in on a soldier who was shooting at her.

Colleagues learned quickly to appreciate all that this CNN camerawoman was. Beyond her rich personality, which included deep optimism and kindness, she brought to her profession topnotch technical abilities, unmatched dedication and an approach to work that inspired others to push themselves.

Moth sought out, even demanded, assignments in conflict zones. She barely survived being shot in the face in Sarajevo in 1992, only to go back as soon as she was physically able. The multiple reconstructive surgeries that followed, as well as the hep C she contracted from a consequent blood transfusion, were mere obstacles she moved around.

But more than three years after being diagnosed with colon cancer, her tremendous 59 year life journey had come to an end.

“Dying of cancer, I would have liked to think I’d have gone out with a bit more flair,” she said with a laugh last spring during an interview with a CNN documentary crew that had travelled to Texas, where she was visiting friends.

Image courtesy http://videomaker.com

Fearless to the end: remembering Margaret Moth Born Margaret Wilson in Gisborne, New Zealand, to a homemaker and a man who made swimming pools, she got her first camera at age 8. She later changed her name to Margaret Gipsy Moth, a nod to the airplane, which was appropriate for a woman who had a penchant for jumping out of planes, barefoot.

She said she never aspired to be a photojournalist. Rather her path, she explained, was mostly driven by a love of history and her desire to see it unfold firsthand.

Whether she was amid rioters after Indira Gandhi’s assassination or covering a long menu of wars spanning continents, Moth felt she and her colleagues were the lucky ones.

“You could be a billionaire, and you couldn’t pay to do the things we’ve done,” said Moth, who had most recently called Istanbul, Turkey, home.

Her attitude made other colleagues, many of whom were interviewed for the documentary “Fearless: The Margaret Moth Story,” strive to be better at what they did. Sound techs and correspondents would often follow her lead, whether they felt ready or not. She was known to outrun her own security. Photojournalists viewed her as a bar-setter.

She “led the complete life,” Christiane Amanpour, CNN’s chief international correspondent said. “I don’t think Margaret could ever look back and say, ‘What if?’ She did it to the max, and she did it brilliantly. And she did it on her terms.”

• Abridged from http://tinyurl.com/y99gtpz (22 March 2010).

The Hep Review Edition 69 June 2010 27

feature

A vaccine for hep C: a worthy and Researchers from Oxford University provide a reasonably easy to understand backgrounder on the development of hep C vaccines.

T

he hepatitis C virus (HCV) was discovered only 20 years ago but the scientific progress made since has been truly impressive; we can now reliably diagnose the infection and cure it in many people using interferon-based treatment regimens.

We are currently working to develop a vaccine that can be used both to prevent hep C (a prophylactic vaccine) and to help increase treatment cure rates (a therapeutic vaccine).

The successful control of any viral infection is dependant on the interplay and effectiveness of multiple arms of the immune system. These arms may be broadly divided into: the innate immune response, which includes generation and activation of blood immune cells that recognise danger signals generated by infection, and the production of interferons; and adaptive immune responses, where antibodies and T-cells are programmed to target specific small protein regions of invading pathogens (bacteria, viruses, fungai, germs, etc).

Over recent years, a number of hep C vaccines have been developed. Only a small handful of these have progressed to studies in humans. There are major obstacles to vaccine development, such as a lack of suitable animal models, and financial and regulatory constraints. Nevertheless, a number of vaccines, composed of a variety of hep C proteins and vectors (the agent that carries the hep C proteins), are in development.

In Oxford, we are currently working with Okairos, a biopharmaceutical company based in Italy, to develop a T-cell vaccine that can be given by intramuscular injection and induces very large numbers of T-cells that target hep C. Our hope is that it will act as both a prophylactic vaccine and a therapeutic vaccine. It is based on two different adenoviral factors that have been engineered to code for the non-structural proteins of hep C. Adenovirus is often the pathogen responsible for common colds. However, in our vaccine, the adenovirus has been genetically manipulated

28 www.hep.org.au

so that following injection it does not replicate and cause infection, but it does express the hep C proteins (infectious hep C is not contained within the vaccine).

One of the potential problems with adenovirus vaccine technology is that people may have pre-existing antibodies to the vector, and this may limit its effectiveness. To get around this problem, we are using rarely two different adenoviruses that rarely infect humans.

We have vaccinated approximately 30 healthy volunteers in a phase I clinical study. The results to date are highly promising and were recently presented at the 2009 annual meeting of the American Association for the Study of Liver Diseases (AASLD) in Boston.

The vaccine appears to be safe. It is well tolerated and is inducing a very strong T-cell response that targets multiple parts of hep C – two of the criteria that we think will be essential for a successful T-cell vaccine. We believe that this vaccine may prevent people from developing chronic hep C. In November 2009, we began a further phase I study in Oxford to assess the effect of the vaccine in people living with chronic hep C. People will be treated with 12 weeks of combination treatment before being given the vaccine. In this setting, we hope that the vaccine will be able to induce significant levels of antiviral T-cells. The ultimate

promotions

attainable goal

aim will be to prevent virological relapse.

One of the major challenges facing hep C vaccine development is the generation of an immune response across multiple hep C strains. Once we have evidence that this vaccine is effective in genotype-1, it may be adapted to work with other genotypes.

The next few years are going to see a revolution in the treatment of hep C. Not only will we see the emergence of whole new class of antiviral drugs in clinical practice, but we will have the first indication of whether a prophylactic vaccine that we know to be effective can also increase the treatment cure rate (work therapeutically).

Support Groups here at Hepatitis NSW are going strong!

February’s group featured a speaker from HALC – a hep C related legal centre. Support group participants heard from a solicitor and got answers to questions about disclosure, discrimination, insurance and more.

Hep C discrimination can be stressful and hard to substantiate. The best way to avoid discrimination is to be careful who you disclose to. The speaker highlighted that it’s a good idea to talk to your health care provider about who you’re happy to have your hep C status disclosed to.

The next Sydney Central support group will be in July, and the speaker will focus on living well with hep C. • For more details, call the Hepatitis Helpline on 1800 803 990.

Image courtesy of Google Images

Image courtesy of Google Images

Sydney Central support group

• Abridged from Barnes E, et al. (2010). A vaccine for hepatitis C: a worthy and attainable goal.

AIDS and Hepatitis Digest. No. 135, pp. 1-4.

St Vincent’s Hospital viral hepatitis clinic trials Trials for patients with hepatitis C

For more information about clinical trials, see ‘A guide to medical trials: what’s in it for you?’ Hep Review, ED66, page 20.

• For further information about hep C clinical trials at St Vincent’s Hospital, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au

Image courtesy of Google Images

The St Vincent’s Hospital Viral Hepatitis Clinic in Darlinghurst is recruiting patients for trials with new therapeutic agents, including combination therapy with pegylated interferon, ribavirin and newly developed protease inhibitors.

The Hep Review Edition 69 June 2010 29

30 www.hep.org.au

The Hep Review Edition 69 June 2010 31

feature

Bad seed

Drawing on the name of Nick Cave’s seminal alternative rock band, this article by Kate Legge explores the toll that hep C is having on many Australian rock music identities.

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ock guitarist Rowland S. Howard dragged himself out of bed on 29 October last year for a gig in his St Kilda neighbourhood.

Weighing 60kg, he barely made a bump under the blankets but a dapper suit helped him conceal his swollen abdomen, puffy legs and the rash over his dysfunctional liver. Dosed with anti-nausea medication, he warned the audience of goths and hipsters that he was feeling queasy and could vomit. The signature Lark cigarette that dangled from his lips when he burst on to the ’70s punk scene with Nick Cave in The Boys Next Door was missing. So too was the heroin that had laced his veins on and off until 2004.

He swigged from a bottle of Pepsi at the Prince that night, playing his trademark Fender Jaguar, performing songs from his new solo album Pop Crimes as well as classics the fans knew by heart.

Standing several feet from the front of the stage, gig reviewer Greg Moskovitch tried to reconcile the room’s thumping mood with the painful signs of Howard’s physical decay.

Halfway through the last song, Exit Everything, he noticed something spill from Howard’s lips. He thought it was sweat or saliva. But when Howard wiped his mouth his fingers were covered in blood; it dripped on to the microphone and down to the floor. “I’m not sure if I’ve ever knowingly been this close to a dying man,” Moskovitch later recounted in an article lauding this gaunt, talented, under-appreciated songwriter, who like it or not had made heroin chic. Eight weeks later, on 30 December, Howard let go of life. He was 50.

Liver cancer had dealt the knock-out punch to a body cannibalised by the hep C, which few Australians could identify as our most common

32 www.hep.org.au

notifiable blood borne disease. It has been estimated that 212,000 people have chronic hep C, numbers that dwarf those for headline-grabbers such as HIV (17,500). Yet there are no pink, red or yellow lapel ribbons drawing attention to their plight because the stigma surrounding infection silences news of the epidemic’s spread. Transmission occurs through blood. People can catch it from tattooing, unhygienic health procedures, or transfusions that occurred prior to screening, but most hep C cases in Western countries come from sharing needles during intravenous drug use.

Studies indicate that 80% contract the disease through shooting up. One jab with a contaminated needle is all it takes.

Those infected with hep C may be like two friends of mine who wish to remain anonymous. They used heroin with borrowed equipment a couple of times over 20 years ago. They now have young children, careers and lead healthy lives – keeping their fingers crossed. Just as bush fires raze one house and leave the next untouched, some individuals (up to 25%) may clear hep C spontaneously while others will experience long term infection. Unchecked and untreated hep C can be a ticking time-bomb that gradually ravages the liver.

Highly successful cures are available but take-up rates remain abysmal. Treatment requires selfinjection for up to 48 weeks, depending on the hep C strain, which can leave patients suffering nasty side-effects including severe depression.

This gruelling regime discourages recruits already shy of owning up to illicit drug use. Inhaling might be something US presidents admit to, but injecting is a darker demon, conjuring up

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Image, this page and following page, courtesy of http://nickcavefixes.files.wordpress.com

d junkies, back alleys and the menace of hard core drug dependence, or what a former hep C carrier dubs “the yuck factor”. In this hushed-up climate the disease casts a lengthening shadow over an ageing population. “[Howard] really hated having hep C,” says Genevieve McGuckin, his closest friend.

“He never complained, ‘why me?’ He hated victimhood [and] he was never the sort of person who glossed over what he’d done.”

“Hepatitis C is an epidemic,” confirms Dr Paul Gow, a senior hepatologist at Melbourne’s Austin Hospital, the nation’s liver transplant centre, where a third of the transplants are hep C-related. “And it’s going to get worse.” He rattles off epidemiological modelling that predicts complications from the virus will increase threefold in the next decade. “The gap between the waiting list and available organs is going to widen unless something changes.”

Australia has one of the lowest organ-donor rates in the developed world and the Rudd Government launched a nationwide campaign in 2008 to try to reverse this trend. The Austin Hospital hinted at sensitivities surrounding organ donation. A spokesman indicated there was anxiety lest this article feed perceptions that organs are being harvested for “deadbeats from punk bands with only themselves to blame”.

Certainly the Prime Minister preferred the sad story of a young girl born with a genetic liver disease to launch the appeal over a 50-year-old former heroin user, brilliant or not.

Yet Rowland S. Howard’s cultural tribe will be lining up for livers, over-represented in the list of patients seeking medical reprieve. On 23 December, seven days before Howard’s death, guitarist Mick Cocks of Rose Tattoo succumbed to the same fate.

The Hep Review Edition 69 June 2010 33

feature There’s an abundance of rock celebrities who could serve as pin-ups for hep C in an age when health campaigns jostle for high-profile patrons.

Paul Stewart of the Melbourne band Painters and Dockers, who got a new liver at the Austin, jokes that the hospital’s liver unit “is like a rock’n’roll catch-up house”. Hepatitis Australia has trouble persuading some to risk recording contracts and sales by adopting the cause. But older musicians who’ve gained a second wind from transplants are keener converts: Criston Barker (ex Air Supply), Shane Laffy (ex Man Friday) and Stewart spruik for the cause. Last May Barker hooked up with Russell Coleman (ex AC/DC) in The Melbourne Hep Cats, while Stewart and Laffy formed The Transplants for a Federation Square concert to draw attention to hep C. Activists say they often encounter a nasty puritanical streak, perhaps heightened by “compassion fatigue”, which reserves pity for more deserving “innocent” victims of illness and disaster. Lindy Morrison (ex The Go-Betweens), who helps run Support Act Ltd for musicians in strife, was informed by a colleague that “several big names” had withdrawn assistance after “finding that many of those who are in need of ‘charity’ had done the drugs/rock’n’roll thing and their money ‘went up their nose’, so to speak”.

“I can’t stand this amazing judgmental attitude from people who should know better,” Morrison snaps. This hardening, even in the industry’s backyard, makes carriers reluctant to report for treatment and sabotages efforts to use prominent people as lightning rods who could encourage public debate.

Like Anzac veterans counting fallen comrades, musicians now aged 50-plus count colleagues with hep C, some of them since buried, along with contemporaries struck down by cancer.

Paul Stewart was waiting for his liver transplant when he attended a 2006 benefit concert for guitarist Lobby Loyde, who died a year later from lung cancer. “I was in a semicircle of five guys. Three of them are now dead and I’ve had a

34 www.hep.org.au

liver transplant and Jimmy Barnes has had heart surgery,” he says. “To tell you the truth I feel blessed. Rowland Howard died. I didn’t. I feel obliged to tell people to take care of themselves.”

Health professionals say there’s a deficit of public knowledge about hep C compared to the hyperawareness of AIDS. They point to the “grim reaper” shock tactics adopted in 1987 TV ads that galvanised the population into a preventative, proactive mindset. Stuart Loveday, president of Hepatitis Australia, calls for “a measured, factual, well-funded, broad-based media campaign to alert the Australian community to what you can do, where you can go for effective treatment.

That’s the best way to make a great big dent in the hep C epidemic”.

“We need to stop the leap in people dying,” says Helen McNeill of Hepatitis C Victoria.

“We need to double the rates of people being treated and we need to reduce the numbers of new infections.” Sixty-five% of people with HIV receive treatment, while only 3% of hep C sufferers put themselves through the combination therapy of pegylated interferon and ribavirin for a period determined by which genotype they carry. The blood is cleared in up to 80% of genotype 3 infections and 50% of genotype 1, the two most common hep C strains in Australia.

“The treatment can make people terribly sick,” McNeill concedes. “They often lose weight and look terrible which means they may have to disclose their condition to family and friends and employers. The stigma is so great that some people prefer to lie and say they’re having chemotherapy.”

For as long as people are frightened or embarrassed to speak out there will be silence and shame. Rowland S. Howard didn’t have the energy or the temperament to proselytise on behalf of his colleagues and contemporaries, but his death screams the loudest warning.

• By Kate Legge. Abridged from http://tinyurl. com/ybvmzgz (19 Feb 2010).

Image by Kate’s Photo Diary, courtesy of www.flickr.com

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Elaine’s story: dog walks and letterbox drops

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ecently I was reading the current Hepatitis C Community News (magazine of the Hepatitis C Council of SA) as I have been considering treatment for my hepatitis C. One of the themes in the magazine struck me as a necessity – to be vocal about hepatitis C so as to reduce the stigma and encourage awareness and understanding for treatment and prevention, which in this case, is much, much better than cure!

The stigma around hepatitis C bothers me immensely, as I feel as though I’ll be tarred and feathered, along with my children if I disclose my hepatitis C status. Still, I have an urge to help prevent the spread of this insidious disease.

Delivering bookmarks to letterboxes seemed to be an inconspicuous way of informing my local community of the hepatitis C statistics.

If even one person is saved, forewarned or encouraged by greater knowledge then my time was worth it.

Armed with handfulls of bookmarks, my daughter and I took our dog for a walk in the neighbouring streets and discreetly slid the bookmarks into letterboxes.

We had fun trying not to be seen by anyone on the walk, and I noted how quickly I became judgemental and selective as the bookmarks ran low. I felt I needed to have more impact in my area to spread the knowledge and not the disease, so I requested many more bookmarks and we went for more enjoyable walks.

Elaine (SA) • Abridged from Hepatitis C Community News, Edition 44. Also see our bookmarks promotion on page 46 of this Hep Review.

The Hep Review Edition 69 June 2010 35

my story

Bluey’s story: the road trip a

T

here is nothing more sombre and thoughtprovoking than a condemned man being escorted through mainstream population in a US prison. Dressed in orange overalls, handcuffs and leg shackles, the man is escorted by four burly prison guards who forge their way though the sea of incarcerated humanity with one chilling command: “Step aside, step aside, dead man walking. Step aside!”

As an eery silence descends on those milling in the prison yard, the macabre procession continues at a snail’s pace towards Death Row. When Bluey told me he felt like a dead man walking, it rattled me. It was my first introduction to hep C. I bumped into Bluey in a Queensland prison during the winter of ‘99. He was doing a fouryear stint for credit card fraud and I was doing three-to-ten for bank robbery. We were both past our use-by-dates in criminality even back then.

It was the last year of the 20th century and a touch football comp had been arranged to see the century out. And to make it interesting, they had an over-50s team: The Over-the-Hill Gang.

Of course, Bluey and I signed up for a guernsey.

Fifty-year-olds thinking they were 30-year-olds and playing like 80-year-olds. But we stuck it out and clawed our way to the grand final.

36 www.hep.org.au

The Youngbloods walked all over us but the Overthe-Hill Gang got to the grand final of ‘99 to play them! And that’s what counted.

It was after the grand final that Bluey told me he had hep C and it might have slowed him down a bit. I didn’t think much about it. We were all lost in the euphoria making it to the end of the comp.

The years passed and we eventually got out of jail. Bluey had settled in country NSW. I returned to Sydney and ended up back in jail. That’s how Bluey found me after 10 years and got back in touch. The hep C had taken its toll on him over the years but he had pulled on another guernsey and was in there fighting again.

“I’m as crook as Rookwood every couple of weeks, and always lethargic. On the whole, though, I’m okay for a dead man walking,” Bluey chuckled to me.

“They’ve got me on 120ml of Oxycontin every day for the pain,” Bluey told me.

“It’s like being on the gear but as long as it stops the pain I don’t give a rat’s arse.”

The doctors were not impressed with Bluey’s deteriorating health and gave him a life expectancy of two years if his liver didn’t repair, with a back-up prognosis of four years.

and the wait Bluey remained the same battling optimist I remembered from the ‘99 end-of-the-century grand final in that Queensland prison.

“I’ve got over their first prediction and now I’m heading towards their back-up prognosis,” he mused thoughtfully.

“Can’t look too far ahead though or I might get crushed if things don’t work out,” Bluey confided.

“A bit like getting knocked back on parole for a dirty urine.”

“As soon as I know one way or the other, I’m selling up and doing a road trip to the Kimberleys. Go catch some barramundi before I cark it. When I finish travelling I’ll come back home and kick my heels up. And wait.”

It seemed like a good solution to his problems. I wished Bluey all the best and then later I thought long and hard.

The little book of hep B facts

Image courtesy of Google Images (digitally altered)

feature

Do you know your facts about hep B? Keep an eye on this new column. It is taken with thanks from The Little Book of Hep B Facts, Hepatitis C Council of South Australia.

I thought about prison, and dead men walking, end-of-the-century grand finals, and hep C. And I realised how ignorant I was of a disease that had infiltrated and spread like an out-of-control bush fire through the entire prison system over the past 20 years. I resolved to go to the library later to learn more. Knowledge is no weight to carry in this place and it can always be handed down to the next generation.

• Only three out of ten people have symptoms when first infected. Symptoms are rare in children.

By Bernie Matthews, Parklea Correctional Centre, NSW.

• Simple blood tests can show if you have ever been exposed to, or currently have, hepatitis B.

• Common symptoms include jaundice, fatigue, joint or abdominal pain, loss of appetite or flu-like illness.

• Most people living with chronic hepatitis B have no symptoms.

• Hepatitis B testing is available through your GP or sexual health clinic.

Image by kabl1992, courtesy of www.flickr.com

• There is a treatment for hepatitis B but not all people with the virus need, or will benefit from, treatment.

• The main goal of current hepatitis B treatment is to suppress the virus and prevent further liver damage.

See our previous and following editions of The Hep Review for all 38 hep B facts – or check out the booklet at http://tinyurl. com/2b8jzdp

The Hep Review Edition 69 June 2010 37

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All you need 2 do is Where did HIV and Health Promotion go?

I

n 1997 Nick Crofts stated “Prisons take people from diverse settings who would not otherwise meet, create the opportunity to spread blood borne viruses among them and then send them back to their original social networks as potential sources of infection”.

Since 1987 when the NSW Health Department first funded the Prison AIDS Project, the main harm reduction tool used to reduce the spread of blood borne and non-blood borne viruses in prisons has been peer education programs.

The peer support system has proved to be a model founded on the principles of a “nonjudgemental approach” and the “respect of peers and confidentiality”. Harm reduction and health promotion were the basis of the program. The Peer Support Program was not intended to turn peer support workers into doctors or nurses but rather to provide more knowledge about HIV/ AIDS, hep C and other infectious diseases taken from the prerequisite HIV & Health Information.

The HIV & Health Promotion unit appears to have closed its doors in 2005. Since then, the prison Alcohol and other Drug (AOD) services in various centres seem to deliver peer support worker programs which provide a harm reduction approach.

My interviews with guys on the inside told me that there are no longer any hep C specific peer support workers. There are peer support workers but these are a more AOD focused model with the aim of preventing harm associated with drug use, tattooing and any risk behaviours. But the fact that there are peer support workers means at least there is a direct source of important information available to people inside jail.

38 www.hep.org.au

I asked some guys what they thought should be done to improve the program.

“I think that the Peer Support Worker should be a longer program with the inmates being employed in that role as their jail job,” said one ex-inmate.

Others believed that it should be a main program inside the jails as infection rates are increasing all the time.

During my conversations some said that they felt that infection rates could be decreased if prisons allowed tattooing and introduced a tattoo program so inmates could learn to become professional tattoo artists. They could have all the proper equipment, as well as a skill they could take into the community upon release.

When asked about this, custodial staff said it would be difficult to initiate as staff would see it as a security issue regarding the safety of staff and inmates.

The previously mentioned HIV/Health Promotion program provided peer support programs that trained inmates to be peer support workers within their centre. Over time this built up a body of qualified peer support workers, ensuring a steady flow of updated and accurate information that was available to anyone who wanted it. The program would be a more than reasonable model for hep C information.

Don’t cuff yourself

”If it were [classified as a prison job] we could have all the pamphlets, etc., and give out small kits to guys. We could visit different wings and units and give small talks in small group settings,” one peer support worker said.

It sounded like a good idea to me, however, corrective services were not keen on too many inmates having too much access to different wings and units. ”We already have a range of delegates and sweepers who have access and it’s hard to keep any eye on all of it without adding to it. If you want to do something like that, each unit should have their own delegated support inmate,” one officer said.

Offender Services and Programs staff believed that current services are more than adequate. ”In the centres, we have AOD workers on the ground, AOD peer support programs, access to the Hepatitis Helpline, as well as Justice Health services focusing on hep C.” But I can’t help seeing the removal of the HIV/ Health Promotion program as being a mistake.

HIV Health Promotion provided workshops, T-shirts and caps to those completing training as well as posters, competitions, diaries and training packages so that peer support workers had a manual of sorts to refresh from and reflect on.

Not only did it enable information to be spread, it empowered those prisoners involved in the program.

This column, “All you need 2 do is ask”, awaits your questions and comments. All mail is read and where possible answered. Specific questions will be answered in the column.

Thank you to all the guys who took the time to write to me and help develop this article.

Remember guys the Hepatitis Helpline is there for you, it’s a free call and our Helpline team is there to answer your questions and provide you with accurate and updated information.

• Until next time Bobby B over and out!

NB: I was in prison when the DCS commenced the HIV/Health Peer Support Program, running one-, three- and five-day peer support programs. Many guys I spoke to recently were also in jail during that time and some are still in jail today. While writing this article I interviewed a few guys from jail outside and over the phone and by mail in order to get the most accurate information possible.

The Hep Review Edition 69 June 2010 39

Image, left, courtesy of http://thisisthelaw.files.wordpress.com Image, far left, provided for All you need 2 do is ask, by Long Bay MSPC inmate.

ask

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Social determinants of he

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

E

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

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

Transport Healthy transport means less driving and more walking and cycling, backed up by better public transport.

Cycling, walking and the use of public transport promote health in four ways. They provide exercise, reduce fatal accidents, increase social contact and reduce air pollution.

Because mechanisation has reduced the exercise involved in jobs and housework and added to the growing epidemic of obesity, people need to find new ways of building exercise into their lives.

Transport policy can play a key role in combating sedentary lifestyles by reducing reliance on cars, increasing walking and cycling, and expanding public transport. Regular exercise protects against heart disease and, by limiting obesity, reduces the onset of diabetes. It promotes a sense of well-being and protects older people from depression.

Reducing road traffic would also reduce the toll of road deaths and serious accidents. Although accidents involving cars also injure cyclists and pedestrians, those involving cyclists injure relatively few people. Well planned urban environments, which separate cyclists and pedestrians from car traffic, increase the safety of cycling and walking.

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1.

2.

3.

4.

5.

6.

7.

8.

9.

10.

the social gradient stress early childhood social exclusion working conditions unemployment social support drug dependence food transport

In contrast to cars, which insulate people from each other, cycling, walking and public transport stimulate social interaction on the streets. Road traffic cuts communities in two and divides one side of the street from the other. With fewer pedestrians, streets cease to be social spaces and isolated pedestrians may fear attack. Further, suburbs that depend on cars for access isolate people without cars – particularly the young and old. Social isolation and lack of community interaction are strongly associated with poorer health.

Reduced road traffic decreases harmful pollution from exhaust. Walking and cycling make minimal use of non-renewable fuels and do not lead to global warming. They do not create disease from air pollution, make little noise and are preferable for the ecologically compact cities of the future.

Policy implications The 21st century must see a reduction in people’s dependence on cars. Despite their health-damaging effects, journeys by car are rising rapidly in all European countries and journeys by foot or bicycle are falling. National and local public policies must reverse these trends. Yet transport lobbies have strong vested interests. Many industries – oil, rubber, road building, car manufacturing, sales and repairs, and advertising – benefit from the use of cars.

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ealth: transport

lid facts, a discussion paper from the World Health Organization.

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

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

As social beings, we need not only good material conditions for good health, but, from early childhood onwards, we also need to feel valued and appreciated. We need more social interaction within society. We need friends and the feeling of being useful. And we need to exercise a significant degree of control over meaningful work. Without

these we become more prone to depression, drug use, anxiety, hostility and feelings of hopelessness, which all affect physical health.

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

• In ED61, we began our coverage of Social Determinants of Health. Over the following nine editions of The Hep Review, we have featured all the topics (far left) that underpin this social viewpoint. Ed.

• Roads should give precedence to cycling and walking for short journeys, especially in towns.

• Public transport should be improved for longer journeys, with regular and frequent connections for rural areas.

• Incentives need to be changed, for example, by reducing state subsidies for road building, increasing financial support for public transport, creating tax disincentives for the business use of cars and increasing the costs and penalties of parking.

• Changes in land use are also needed, such as converting road space into green spaces, removing car parking spaces, dedicating roads to the use of pedestrians and cyclists, increasing bus and cycle lanes, and stopping the growth of low density suburbs and out-of-town supermarkets, which increase the use of cars.

• Increasingly, the evidence suggests that building more roads encourages more car use, while traffic restrictions may, contrary to expectations, reduce congestion.

Series conclusion

This publication examines this social gradient in health, and explains how psychological and social influences affect physical health and longevity. It then looks at what is known about the most important social determinants of health today, and the role that public policy can play in shaping a social environment that is more conducive to better health.

This second edition relies on the most up-to-date sources in its selection and description of the main social determinants of health in our society today.

Key research sources are given for each: stress, early life, social exclusion, working conditions, unemployment, social support, drug dependence, healthy food and transport policy.

Policy and action for health need to address the social determinants of health, attacking the causes of ill health before they can lead to problems. This is a challenging task for both decision-makers and public health actors and advocates.

• Abridged from Social determinants of health: The solid facts (second edition), World Health Organization, 2003. The full booklet can be downloaded from http://tinyurl.com/55lcc9

Poorer people live shorter lives and are more often ill than the rich. This disparity has drawn attention to the remarkable sensitivity of health to the social environment.

The Hep Review Edition 69 June 2010 41

feature

HELLO HEPATITIS HELPLINE I’ve just started a new job and I’m wondering how I should tell my boss that I have hep C. What’s the best way to get it out in the open?

The first thing I’d like to do here is go back a step.

Let’s think about whether you need to tell your boss about your hep C at all; most people actually don’t have to! Unless you’re a health care worker who performs exposure-prone procedures or you work for the Defence Force, then there’s no legal requirement to tell people at work.

You might be worried about the risk of transmission at work – this is a really normal concern for lots of people living with HCV. Many people with hep C feel that they need to alert their first aid officer in case they get injured at work, but that actually isn’t necessary. If the first aid officer is properly trained, they will know that all blood should be treated as though it can pass on viruses like hep C. Those universal precautions are the best way to ensure everyone’s safety, regardless of any individual’s health or medical history. If you think that the first aid procedures at work aren’t up to scratch, you might even consider becoming a first aid officer yourself.

Having said all that, some people still feel they need to tell their co-workers and employer. In those cases, it’s worth thinking about why you feel obliged to disclose. Unless you’re working in one of those industries I mentioned above, the decision to disclose should be about you. Will you have a better time at work if you decide to disclose? Will it make it easier for you to take time off if you need to? Will it mean that people jump to conclusions if you’re unwell? Do you think your boss will treat you differently? These are the sorts of things that are worth weighing up.

It might also be worth thinking about the sorts of reactions (negative, positive and indifferent) that you might receive when you tell people at work.

Once you’ve told someone that you have hep C that information can’t be taken back. As always with disclosure, it’s a good idea to practise (alone or with someone who already knows), to have some printed info on hand and to give people a bit of time. Also, try to prepare yourself for the full range of reactions; you might not have to worry about negative reactions, but it doesn’t hurt to think about what might happen and how you might respond.

The final thing you might want to do if you decide to disclose at work is have the Hepatitis Helpline card handy. We often talk to people’s employers and co-workers about hep C, and we handle difficult questions all the time. We can make sure the information your colleagues are receiving is up to date and precise, and provide you with support before and afterwards.

For more information about disclosure, or to order a copy of My Choice – My Rights, please call 1800 803 990.

Finally, remember that we are always happy to answer as many questions as we can here at the Hepatitis Helpline.

•

‘Hello Hepatitis Helpline’ is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details have been changed to ensure caller anonymity.

42 www.hep.org.au

Hepatitis Helpline.

FERRAL. INFO. SUPPORT. RE L TIA EN ID CONF

hepatitnise helpli

opinion

Time to decriminalise drugs Practically all people answered “no” when asked if they would try hard drugs if made legal, so let’s look at decriminalisation, writes former Seattle police chief, Dr Norm Stamper.

O

f all the noteworthy reasons offered for putting an end to the “War on Drugs”, the one that surely gets the least play is this; people like their drugs and don’t appreciate the Government telling them they can’t have them.

Only a tiny fraction of drug-policy reformers trot that one out at conferences or in opinion pieces. Even some doctrinaire libertarians choke on the sentiment.

We have to draw the line somewhere, they say. What message does adult drug use send our youth?

An important question, to be sure. But we might want to ask ourselves what message we’re already transmitting to young, impressionable minds.

We’ve told our kids that cannabis is a “gateway” drug. Smoke it and you’ll surely wind up face down in a urine-soaked alley, a needle sticking out of the collapsed vein in your arm.

We’ve told them, by the very act of repealing alcohol prohibition in the United States 76 years ago, that booze is safer than pot. We’ve told them that those who use drugs are criminals, and those who become addicted are “junkies” or “dope fiends”. We’ve told them to “just say no”, surely inoculating them and their friends against any foreseeable drug use.

The problem is that so much of what we’ve told our children is a lie. And they know it.

Are drugs dangerous to kids? You bet they are, starting with the certifiably authentic “gateway” drug of nicotine.

Mind and mood-altering drugs can cause serious damage to adolescents’ normal development. So can lies. Misleading young people subtracts from our credibility. It diminishes our authority, and makes it difficult to convey legitimate concerns about drug use.

A growing number of reformers are challenging the duplicity of drug war proponents – even as we work just as hard as they to keep dangerous drugs, including alcohol, out of the lives of our kids.

I’m a member of Law Enforcement Against Prohibition, an organisation of 13,000 present and former criminal justice practitioners and allies. We’ve concluded that the drug war, prosecuted with bogus claims and shrill propaganda, has made the world much less safe for all, especially our youth.

Our agenda? End the drug war; replace prohibition with a regulatory model; reverse the 7:1 ratio of funding for enforcement over prevention and treatment, thereby reducing death, disease, crime, and drug dependence; and support solid educational programs that help all people, young and old, make informed judgments about what they choose to put into their bodies.

Defenders of the status quo believe that ending prohibition would cause hordes of drug-free people to line up to smoke crack or shoot smack. An October 2007 Zogby poll of voter-age Americans debunks that myth. More than 99% of non-users answered “no” when asked if they would try hard drugs “such as heroin or cocaine” if such were made legal (0.6% said yes, 0.4% weren’t sure).

What would happen if the government no longer ordered adults not to use drugs? My guess is that a small number of the uninitiated would experiment with cannabis (100 million Americans have already tried it at least once), and that overall drug use would drop – the result of a shift in public policy that puts our money on prevention and treatment.

• Abridged from http://tinyurl.com/2ch8j42 (15 Oct 2009).

Dr Norm Stamper was a police officer in the United States for 34 years, including six years as Seattle’s police chief. He is visiting Australia with support from the Australian Drug Law Reform Foundation.

For more information about Dr Norm Stamper and LEAP, visit their website; www.leap.cc

The Hep Review Edition 69 June 2010 43

a keyhole to our work c) $90,000 over one year; workforce development, raising awareness of hep C and building capacity of workforce of Aboriginal Health Education Officers and Aboriginal Drug & Alcohol workers. d) $300,000 over two years; state-wide health promotion/social marketing campaign.

Kerry and other HNSW staff will be involved in and consulted on these projects, with our specific focus on supporting and working collaboratively with the nine AHS and ACCHS Aboriginal hep C coordinator positions.

We held our second Aboriginal Cultural Awareness training in February 2010 for staff and volunteers. A follow up plan ensures ongoing implementation of actions arising.

Eight per cent of callers (110) identified as Aboriginal to the NSW Hepatitis Helpline and Prisons Hepatitis Helpline in 2008/09.

We promoted and accompanied the highly acclaimed health promotion community theatre production Chopped Liver tour across NSW in both 2008 and 2009.

We enjoy an ongoing, formal Memorandum of Understanding with the Aboriginal Health and Medical Research Council (AH&MRC) the peak organisation for the Aboriginal Community Controlled Health Services (ACCHS) in NSW. Our award winning Street Shots hep C health promotion photoessay project has been taken on

by AH&MRC to become Deadly Shots, adapted specifically for young Aboriginal young at risk from or with hep C. We contribute to resource development and printing of the AH&MRC’s booklet Hep C and Us Mob, and to other health promotion initiatives such as the Play Your Cards Right playing cards developed by a group led by South West Sydney Area Health Service, and the AH&MRC’s Dr BBV board game.

Our Education and Development team provides workforce development and training to Aboriginal Health Workers and ACCHS. We have a commitment to further liaison with ACCHS executive officers and development of future partnerships with Boards of ACCHS. •

Hepatitis NSW

44 www.hep.org.au

HALC

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

HALC is a community legal centre providing free advocacy and advice. Our solicitors understand the needs of people living with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and Health Care Complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship.

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

Central Coast support group For people on treatment or thinking about treatment The group provides an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere.

Gosford: 6pm-7.30pm on the last Thursday of each month at the Education Centre, Gosford Hospital.

Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy, Wyong.

• For more information, please contact 4320 2390.

Image courtesy of Google Images

Continued from page 2.

membership matters You are vital to us — we are here for You MEMBERSHIP RENEWALS REMINDER It’s June, and the clock is ticking … renewals are OVERDUE for all categories of membership. We have fee categories and payment methods to suit all circumstances, so don’t delay - renew today.

Help US to help YOU. How to join or renew? It’s easy – by mail, fax or secure online facility via our website www.hep.org. au Visa, MasterCard, cheques and Australian Money Orders are all welcome.

Are you an existing professional or organisational member? Please quote your invoice number for correct payment allocation; we need to identify your membership before we can credit it.

IN YOUR WINTER EDITION OF MEMBER NEWS (DUE IN YOUR LETTERBOX ANY DAY NOW), READ ABOUT: • Community member scholarships to the 7th Australasian Viral Hepatitis Conference in Melbourne, 6 – 8 September 2010, up for grabs for two of our financially current 2010 members living in NSW in Zero Fee, Concessional and Waged membership categories. We give preference to those members who have not already been awarded one of our scholarships.

• Sydney psychologist profile - our latest Board appointment • A new recruit to the Education and Development team

A historical perspective – 1994 Ignorance of the symptoms of hep C has been an enormous barrier faced by symptomatic people who cannot work full-time and who seek income support from the Department of Social Security. Through the Welfare Rights Centre’s involvement with the Hepatitis C Support Group, we have recently been able to assist several people with hep C in their battles to secure Disability Support Pension (written

by Linda Forbes, Welfare Rights Centre).

Currently, everyone is aware that interferon is not available except to those who are able to afford the cost of the drug. A taskforce set up by the NH&MRC has been working hard to put forward proposals to the Federal Department of Health regarding the availability of this drug for people with chronic hepatitis C. It is hoped that a decision would be made on this drug before the middle of this year. At John Hunter Hospital in Newcastle, a proposal has been put to the Ethics Committee to allow a study of traditional Chinese herbal medicine in a small group of patients who at this stage, are unable to gain access to interferon (written by Prof Bob Batey).

A Planning Sub-committee has been formed to develop a strategic plan for the organisation, consider funding applications and work towards raising the organisational skills of the management committee.

A number of members in Sydney have expressed the wish to just get together and talk to other members of the group. In response to this, three members have offered to open their homes and invite people in for coffee. Talk about fairy Godmothers (and fathers!)

A big, big, thank you to all those wonderful people: metro, country and interstate who give so freely of their time and themselves to act as volunteer phone counsellors for people with hepatitis C. Please note that from the 19th of July, the 008 Support Line will operate for NSW only. The organisation can no longer afford the enormous costs of an Australiawide service.

• Taken from Australian Hepatitis C Support Group newsletter, Edition 9, June 1994.

The Hep Review Edition 69 June 2010 45

hep C bookmarks O

ur hep C bookmarks have proved handy in promoting greater awareness about hep C in the general community.

Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.

Can you help raise awareness by distributing the bookmarks?

Ideas include: • putting them in doctors’ surgeries • taking them to your local library • taking them to your local community centre.

We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990).

• Hepatitis NSW

Hepatitis C is not classified as a sexually transmitted disease The virus is transmitted when infected blood from one person gets into the bloodstream of someone else For more information about how hep C is transmitted, visit www.hepatitisc.org.au or call the Hep C Helpline (see over)

Hep C is a serious illness caused by a tiny virus (germ) that damages the liver Hep C is transmitted when infected blood from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker does not use sterile equipment and sterile techniques.

To find out about safer tattooing and piercing, visit

www.hepatitisc.org.au

or call the

Hep C Helpline

(see over)

46 www.hep.org.au

Hepatitis C is hard to catch.

It is not transmitted by touching someone who has it or drinking out of the same cup or using the same knives and forks.

It is transmitted when infected blood from one person gets into the bloodstream of someone else.

For more information about hepatitis C visit www.hepatitisc.org.au or call the Hep C Helpline (see over)

Visit the all new www.hep.org.au and start clicking

promotions

research updates Hep C incidence and risk in Australian prisons

Hep C treatment results: how should they be handled?

Australia – This study aimed to establish hep C incidence and the demographic and behavioural predictors in seronegative drug injecting prisoners. It involved prisoners in NSW who were aged 18 years and over, reported IDU, had been continuously imprisoned, had a documented negative hep C antibody test result in prison in the last 12 months and provided written informed consent. Subjects were interviewed about their demographic characteristics and detailed risk factors for transmission prior to, and since, imprisonment. A blood sample was collected to screen for hep C antibodies and PCR.

Australia – This research aims to explore the experiences of patients who have relapsed following hep C therapy, and to illustrate the benefits of pre- and post-test counselling to prepare patients for the news about whether or not their treatment was successful.

Of 253 inmates recruited, 120 were continuously imprisoned and included in this analysis. Sixteen acquired hep C infection indicating an incidence of 34.2 per 100 person years. Risk factors for transmission included prior imprisonment, methadone treatment and greater than 10 years of education. Although the frequency of injecting was reduced in prison, 33.6% continued to inject drugs, most commonly methamphetamine, and 90% of these reported sharing injecting equipment. Prison inmates were at high risk of HCV infection, despite some reduction in highrisk behaviours and access to prevention services.

To prevent HCV transmission in prisons, better prevention strategies are required.

• Incidence and risk for acute hepatitis C infection during imprisonment in Australia.

Kate Dolan, et. al. Eur J Epidemiol DOI 10.1007/s10654-009-9421-0

Patients who have failed to respond to treatment will be invited to participate in a semi-structured interview and to complete a questionnaire.

Information gathered from the questionnaire will be analysed to identify common themes.

Anecdotal evidence suggests that patients who have relapsed post-therapy experience a sense of failure and exhibit symptoms of anxiety. Numerous studies have reported pre- and post-test counselling reduces anxiety and facilitates acceptance and results in a less stressful response to a positive hep C diagnosis.

To date there have been no studies into the benefits of pre- and post-test counselling for patients who have relapsed after completion of hep C therapy.

Our study findings aim to improve patient health outcomes, facilitate the development of a model of care to prepare and support patients prior to and immediately following test results and to allow the identification of strategies that may help patients negotiate ongoing issues resulting from the failure of treatment.

• What happens when treatment fails? an investigation into the development of better practice models to prepare patients for relapse post HCV therapy. Janssen, C. Dept of Gastroenterology and Hepatology, St George Hospital, Sydney. Abridged from conference abstract, Evolving Knowledge and Practice: 11th Social Research Conference on HIV, Hepatitis C and Related Diseases.

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

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

The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). NB: in some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.

The Hep Review Edition 69 June 2010 47

research updates Words used to describe drug use can contribute to stigma USA – Stigma is a frequently cited barrier for many people who are seeking help and who are dependent on drugs. Common ways of describing individuals with such problems may perpetuate or diminish stigmatising attitudes yet little research exists to inform this debate. We sought to determine whether referring to an individual as “a substance abuser” versus “having a substance use disorder” evokes different judgments about behavioural self-regulation, social threat, and treatment versus punishment.

A randomised, between-subjects, cross-sectional design was utilised. Participants were asked to read a vignette containing one of the two terms and to rate their agreement with a number of related statements. Over 500 clinicians attending two mental health conferences completed the study. A Likert-scaled questionnaire assessed the perceived causes of the problem, whether the character was a social threat, able to regulate substance use, and should receive therapeutic versus punitive action.

No differences were detected between groups on the social threat or victim-treatment subscales.

However, a difference was detected on the perpetrator-punishment scale. Compared to those in the “substance use disorder” condition, those in the “substance abuser” condition agreed that the character was personally culpable and that punitive measures should be taken.

Even among highly trained mental health professionals, exposure to these two commonly used terms evokes systematically different judgments. The commonly used “substance abuser” term may perpetuate stigmatising attitudes.

• Does it matter how we refer to individuals with substance-related conditions? A randomized study of two commonly used terms. Kelly JF and Westerhoff CM. International Journal of Drug Policy 2010.

21(3): 202-207.

48 www.hep.org.au

Virus eyed as new treatment for cancers Canada – Researchers are working on a fascinating new way to treat prostate cancer using viruses. And while it’s still early days, they say their research opens the door to more effective cancer therapies with fewer side effects.

The treatment uses something called oncolytic viruses, which are viruses that seek out cancer cells, invade them and destroy them.

While there are a few naturally-occurring oncolytic viruses, in the last decade scientists have been studying how to genetically engineer them to attack specific cancer tumours.

The idea is that the viruses will attack cancer cells while leaving healthy tissues alone, offering an alternative to current cancer treatments, such as chemotherapy and radiation, which destroy healthy cells as they work.

The new therapy being developed by Alberta researchers uses a reovirus, from a family of common viruses that cause mild, even undetectable, stomach and respiratory illnesses.

The virus they use has already shown potential to attack many types of cancer cells, including lymphoid, ovarian, and breast cancer. To test how well it worked against prostate cancer, researchers led by Dr Don Morris, a medical oncologist in the Department of Oncology at the Tom Baker Cancer Center in Calgary, recruited six men for a Phase 1 trial.

“When we first saw [the] results, the safety and efficacy activity in human patients, ecstatic would be the word,” Morris told CTV News.

“The success in the first six patients’ trial was everything we hoped for and perhaps more.”

Oncolytics Biotech is now studying the reovirus on other forms of cancer, such as those that affect the head and neck, liver cancer, even breast and brain tumours.

• Abridged from http://tinyurl.com/2a4gtle (9 Mar 2010).

research updates Historic trauma in Canadian Aboriginal people boosts hep C risk Canada – The trauma of having a parent who was forced to attend a residential school [mission] is linked to higher rates of hep C infection among Aboriginal young people, new research suggests.

The research was part of the Cedar Project, a long-term collaborative research project focusing on HIV and hep C infection in young Aboriginal drug users in British Columbia, Canada.

The Public Health Agency of Canada estimates the prevalence of hep C infection is 0.8% in the general Canadian population, but says the disease is seven-times more prevalent among Aboriginal people than non-Aboriginal people.

Factors strongly linked with hep C infection among study participants who used injection drugs included: • Being female (women were 1.9 times more likely to test positive).

• Having at least one parent who attended a residential school (1.9 times more likely).

• Reusing syringes (2.4 times more likely).

Schechter said the research suggests that breaking apart communities and separating children harms cultural identity and social cohesion, which, in turn, affects disease risk.

“Intergenerational trauma passes down and ends up demonstrating itself as risk-taking in the next generation,” Schechter said. That risk-taking can manifest as injection drug use and sharing needles.

The study’s authors called for culturally based prevention, treatment and harm-reduction programs that are designed and delivered by Aboriginal people, including needle exchanges, wide distribution of clean needles and safe injection sites.

The researchers estimated more than 100,000 Aboriginal children were removed from their families between 1874 and 1986, based on studies and the 1996 Royal Commission on Aboriginal Peoples.

• Abridged from http://tinyurl.com/2bdgsec (12 Feb 2010).

The Big Day Out study Australia – This study surveyed young people who attended the annual Big Day Out music festival in Sydney, from 2006 to 2009.

Illicit drug use was common among attendees of the Big Day Out with 55% of respondents in 2009 reporting that they had used at least one illicit drug in the previous 12 months. The most common drugs recently used were cannabis (43%), ecstasy (35%) and amphetamine (29%).

Respondents generally had poor knowledge of how hep C was transmitted. While it was generally known that a person could get hep C from sharing needles, less than half the respondents knew that a person could not get hep C from sharing toilets and showers or sharing food, drinks, cups or cutlery.

Injecting drug use was rare, with 4% of respondents in 2009 reporting that they had injected a drug in the previous 12 months. Being exposed to injecting by other young people who engaged in it was much more common, with 26% of respondents reporting that in the previous 12 months they had had a friend or boyfriend/girlfriend who had injected, or that they had been offered drugs to inject.

Respondents who had been exposed to injecting generally had a poor understanding of how hep C was transmitted, with for example only 64% knowing that a person could get hep C from sharing needles. Further, they had poor knowledge about health services available to those who injected drugs, with only 12% being able to correctly identify a place to obtain sterile needles and syringes.

Respondents who could identify places to obtain sterile needles and syringes mostly identified pharmacies, which highlights an important role for pharmacies in providing harm reduction services for young people who have recently started injecting or who may start injecting soon.

The findings identify a need to improve knowledge about hep C and safe injecting among young people in NSW. Importantly, any education messages should capitalise on the finding that a considerable proportion of young people know others who inject, and suggest to young people that they could help their friends and partners by acquiring and passing on quality information about injecting and hep C. • Abridged from Drug use, hepatitis C and exposure to injecting among young people in NSW, National Centre in HIV Social Research. http://tinyurl.com/25668d8

The Hep Review Edition 69 June 2010 49

research updates Inactive hep B virus can still cause liver cancer Taiwan – Despite a belief by researchers that inactive carriers of hep B are not at high risk of disease progression, a new study suggests that such patients are still at increased risk of liverrelated death.

And a drinking habit is “the universal risk predictor of liver disease progression” in such patients, note Dr Chien-Jen Chen and coauthors in Gastroenterology.

Inactive hep B carriers have hep B surface antigen in serum without HBV e antigen or aminotransferase elevations, according to the authors.

In a prospective cohort study conducted in Taiwan, the researchers compared the risk of HCC and liver-related mortality in two sub-cohorts from the REVEAL-HBV study; an inactive hep B carrier group (1,932 people) and a control group negative for hep B surface antigen (18,137 people).

People’s ages ranged from 30-65. They excluded people with liver cirrhosis at entry or who developed end-stage liver disease during the first 12 months. None had received antiviral medications.

Dr Chen, from Academia Sinica, Taipei, and his group believe this is the first populationbased study with long-term follow-up of inactive hep B carriers.

They verified liver-related death and new cases of hepatocellular carcinoma through computerised data linkage with the National Cancer Registry and National Death Certification files.

Even carriers with an undetectable serum HBV DNA level at study entry were at increased risk for both liver cancer and cancer-related death.

One weakness of the study, the authors note, is that it was not clear how many subjects remained in the inactive carrier phase because there were neither liver biopsies nor serial hep B DNA levels available.

Gastroenterology 2010.

• Abridged from http://tinyurl.com/25tjeut (15 Feb 2010).

50 www.hep.org.au

Mouse gets human liver USA – A mouse has been given an almost complete human liver so that it is susceptible to human liver infections, including heps B and C, and responds to human drugs, opening a door to new study methods and treatments for debilitating human liver diseases, researchers say.

Many infectious diseases are host-specific and are adapted to infecting certain organisms but not others. For example, only humans and chimpanzees can catch heps B or C. This specificity helps to prevent widespread infection across species, but it makes it hard to study human diseases in other animals.

The usual way around this problem is to grow and treat human cells in a dish, but this isn’t possible with liver cells, called hepatocytes.

“Human hepatocytes are almost impossible to work with as they don’t grow and are hard to maintain in culture,” explains study-author Inder Verma, a professor in the Laboratory of Genetics at the Salk Institute in La Jolla, Calif.

Mice whose own hepatocytes have been replaced with human liver cells provide a solution to all these hurdles. They use a specific mouse that has liver problems of its own, but whose problems can be kept in check with a drug called NBTC. Taking away NBTC allows transplanted human hepatocytes to take hold and populate the mouse liver with human cells.

With the new system, nearly 95% of the liver cells are of human origin.

Importantly, unlike normal mice, these mice could develop heps B and C. And when given the standard drugs for treating these diseases, the “humanised” liver inside the mouse responds just like a normal human liver.

“This robust model system opens the door to utilise human hepatocytes for purposes that were previously impossible. This mouse can be used for drug testing and gene therapy purposes, and in the future, may also be used to study liver cancers,” Verma said.

• Abridged from http://tinyurl.com/2e5msdc (23 Feb 2010).

research updates Researchers probe hep C diabetes link

Tree shrew offers new hep C research options

Australia – Heightened risk of type 2 diabetes among people with hep C was thought to be linked to fat build-up in the liver caused by their hep C, but a recent study found something else was awry.

Japan – Researchers suggest that the tree shrew may be a practical small-animal model for studying the progression of hep C. This discovery would replace the need for rare and expensive studies using chimpanzees, currently the only validated animal model for hep C. They report their findings in the Journal of Virology.

The Garvan Institute of Medical Research study confirmed the 29 study participants all had “high insulin resistance”, a precursor to diabetes, but the problem was traced to their muscle and not their livers.

Professor Don Chisholm said this result was “contrary to all expectations”.

“Not only did we find no significant insulin resistance in the liver of the patients in the study, half of them suffered from a strain of hep C that causes about three times the normal level of fat to accumulate in the liver,” Prof Chisholm said.

Genotype 3 is known to cause significant fat deposits in the liver. Study participants with this strain were shown to have the same level of insulin resistance as those with no liver fat accumulation.

An insulin-resistant liver produced unwanted glucose while insulin-resistant muscle could not absorb it from the bloodstream, leading to high levels of sugar in the blood, Prof Chisholm explained.

“More work now needs to be done into why hep C causes insulin resistance in muscle. That will give us better insight into the behaviour of the disease,” Prof Chisholm said.

Prof Chisholm conducted the research along with Dr Kerry Lee Milner also from the Garvan Institute, in collaboration with Professor Jacob George from the Storr Liver Unit at the University of Sydney and Westmead Hospital.

• Abridged from http://tinyurl.com/2es7trl (9 Mar 2010).

Hep C is a highly potent viral infection that can ultimately lead to chronic hepatitis, liver steatosis, cirrhosis, and hepatocellular carcinoma. The current course of treatment against hep C includes interferon therapy (stimulating the processes within cells that slow the reproduction and growth of the virus) in conjunction with the antiviral drug ribavirin, however, the combination treatment is difficult for patients to endure and is often ineffective.

The tupaia (Tupaia belangeri), also known as a tree shrew, is a small non-primate mammal commonly found in certain regions of Southeast Asia. Previous studies have shown tupaias to be susceptible to a wide range of human-pathogenic viruses, including hep B. In this study researchers inoculated tupaias with hep C and analysed the progress of infection over a three-year period.

Results showed mild hepatitis and intermittent viraemia during the acute phase of infection, chronic hepatitis that worsened over time, and the detection of liver steatosis, cirrhotic nodules and the production of new tumours.

“These data suggest that the tupaia is a practical animal model for experimental studies of hep C infection,” say the researchers.

“Comparative studies of hep C infection in different species will help us to understand the basic mechanisms of persistent infection.”

• Abridged from http://tinyurl.com/2ctu6b6 (21 Jan 2010).

The Hep Review Edition 69 June 2010 51

Monday 6 to Wednesday 8 September 2010 The Sebel Albert Park, Melbourne, Victoria, Australia

Registration is Now Open.

Please visit the conference website to register and view the conference program.

Be sure to register online before Friday 2 July to receive the reduced earlybird registration rate.

There are also reduced rates for people working in community organisations & for people living with hepatitis.

A number of key international and national speakers have been confirmed along with the conference symposia sessions. Please visit the conference website to view the updated program and list of the confirmed speakers.

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CONFERENCE PARTNERS  Australasian Society for Infectious Diseases  Australasian Society for HIV Medicine  Australian Centre in HIV and Hepatitis Virology Research  Gastroenterological Society of Australia/Australian Liver Association  Hepatitis Australia  Hepatitis Foundation New Zealand  National Centre in HIV Social Research  National Hepatitis B Alliance

52 www.hep.org.au

For information please visit www.hepatitis.org.au or contact the conference office at: 7th Australasian Viral Hepatitis Conference 2010 Locked Mail Bag 5057, Darlinghurst NSW 1300 Australia Ph: +61 2 8204 0770 Fax: +61 2 9212 4670 Email: info@hepatitis.org.au Web: www.hepatitis.org.au

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interferon-based treatment Interferon-based treatment

partner). Female partners of men undergoing treatment must not be pregnant.

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

Age: People must be aged 18 years or older.

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

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

Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each

Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information).

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

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

tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response.

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

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

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

CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks.

Psychiatric status during therapy should be monitored.

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

Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.

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complementary medicine they have cirrhosis or bridging fibrosis, both of which would have an impact on treatment monitoring.

See “Monitoring Points”, page 54.

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

Alternative access People wanting to access interferonbased 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, contact your nearest treatment centre. For telephone numbers, please call the Hepatitis Helpline (see page 56).

NSW treatment centres Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy.

Treatment centres exist in most parts of New South Wales. Phone the Hepatitis Helpline for the contact details of your nearest centre.

Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits.

A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few side effects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see Edition 24, page 8). A trial of particular herbs and vitamins was recently carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see Edition 45, page 9).

Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to.

• Will they consider all relevant diagnostic testing?

• Will they consult with your GP about your hepatitis?

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

In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment.

• How has this complementary therapy helped other people with hepatitis?

• Hepatitis NSW (the above info is reviewed by the Commonwealth Department of Health and Ageing prior to publication).

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

• What are the side effects?

• How have the outcomes of the therapy been measured?

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

You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee.

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

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

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

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

Phone the Hepatitis Helpline (see page 56) for more information and the contact details of relevant professional associations.

• Hepatitis NSW. To access any of the above mentioned articles, please phone the Hepatitis Helpline.

The Hep Review Edition 69 June 2010 55

support and information services Hepatitis Helpline For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services.

• 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers).

Prisons Hepatitis Helpline A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above.

Advice on food and nutrition Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners It is important that you have a well-informed GP who can support your long-term healthcare needs. Your doctor should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training.

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

Family and relationship counselling If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.

56 www.hep.org.au

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

Sexual health clinics Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private.

Community health centres Community health and neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community health centres.

Culturally and linguistically diverse communities The Multicultural HIV/AIDS and Hepatitis C Service (MHAHS) provides services for people from culturally and linguistically diverse backgrounds.

To access hep C information in languages other than English, phone 9515 5030 or 1800 108 098 or visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes some information resources in various languages.

The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www.ashm.org.au

Legal advice The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment.

This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW).

support and information services Hep C Australasia online peer support This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences.

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

Online hep C support forum An online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups For people on treatment or thinking about treatment.

The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390.

Gosford: 6pm-7.30pm on the last Thursday of each month at the Education Centre, Gosford Hospital Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy. Coffs Coast hep C support group A peer support group for people living with or receiving treatment for hep C. Meets every 3rd Monday, 5-7pm at the Coffs Harbour Community Centre. For info, phone Janet Urquhart, Social Worker, Coffs Harbour Health Campus on 6656 7846.

Coffs Coast family and friends support group A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609.

Hunter hep C support services A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789.

Nepean hep C support group Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light

refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466.

Northern Rivers liver clinic support group An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539.

Port Macquarie hep C support group Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0418 207 939.

Parramatta support group A support group for people living with hep C, including those in treatment. From 7pm to 8.30pm, first Thursday of every month (except Dec and Jan) at Parramatta Health Services, Jeffery House, 162 Marsden St, Parramatta. There is no parking on site. It is a 10-minute walk from Parramatta station. For info, phone Susan on 9845 5627 or Jamie on 9845 7419.

Sydney Central support group A chance for people living with hep C to meet others and get some support. We meet on the 3rd Tuesday of each month, from 6–8 pm at Hepatitis NSW, Level 1, 349 Crown Street (corner of Crown and Albion Streets), Surry Hills. Food and drink provided.

For info, phone the Hepatitis Helpline on 9332 1599.

Traids Traids is a statewide counselling, support and advocacy service for people with medically acquired hep C or HIV. It offers free and confidential services to affected people and their families and carers. For info, phone the Traids worker at ASHM on 9515 5030 or 1800 108 098.

Westmead hep C information night Our information nights are organised for people with hep C, families, friends and interested others. Parking is available at the hospital but you will need $6 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 info, phone Susan on 9845 5627.

The Hep Review Edition 69 June 2010 57

noticeboard promotions The most precious gift

Upcoming events

We hope that all readers – including those people living with hep C – will consider registering to donate their body organs.

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

Inner city Sydney support groups: 15 June, 20 July, 17 Aug. Level 1, 349 Crown St, Surry Hills. For more info, please phone 9332 1599.

Conferences:

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

Australasian Viral Hepatitis Conference 2010.

The 7th Australasian Viral Hepatitis Conference is being held in Melbourne from 6-8 September 2010. Online abstract submission is also now available and submissions close on 23 April; please visit the conference website at www. hepatitis.org.au

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

Complaints

Please phone 02 9229 4003.

Do you want to help us?

Image courtesy of Google Images

We are a membership organisation, governed by a board elected primarily from our membership.

We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C. As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • providing content for The Hep Review and Transmission Magazine.

• proofreading for The Hep Review and other Council publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker.

Want to find out more? Please phone the Hepatitis Helpline for more information (see page 3).

58 www.hep.org.au

If you wish to make a complaint about our products or services, please visit our website for more information: about-us/complaintsand-disputes-handling.

Or see page three for our phone number and postal address.

Paediatric viral hepatitis clinic Hepatitis C and hepatitis B occur among children in Australia although exact numbers are unknown.

Children affected usually feel well and often are unaware of their infection.

The Paediatric Viral Hepatitis Clinic at Westmead provides early diagnosis, monitoring and, in some cases, treatment of children with these infections.

Assessment and regular follow up is essential to provide optimal care for children with hep B or C to reduce the risk of significant liver disease in later life.

For more information, contact Janine Sawyer at The Children’s Hospital Westmead on 9845 3989 or by email: janines1@chw.edu.au

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

1.

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

A. For

people affected by hepatitis or other interested people

Name P ostal address S uburb/ town

Hepatitis NSW is overseen by a voluntary board of governance, mainly made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and financial support of our members.

S ta te

P o s tco d e

Home phone

E mail

Privacy policy

Name

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

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

Membership Our membership year begins on 1 March and runs to the end of February the following year.

All members (including Zero Fee members) are required to renew their memberships annually to retain member benefits.

For NSW health care workers One of our services is the NSW Hepatitis Helpline, an information and support phone line whose staff are 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 hepatitis information.

The Hep Review, the most widely-read hepatitis publication in NSW, targeting both people affected by hepatitis C and health care workers, is provided free to all members of Hepatitis NSW. If your service has clients or patients who may be interested in The Hep Review please indicate the number of extra copies you would like to receive.

B.

For individual healthcare or related professionals

Postal address Suburb/town State

P ostcode

Work phone

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E mail

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Free copies of The Hep Review required

C.

1

2 5 10 20 50 80 160

For agencies, organisations and companies

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P ostcode

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The Hep Review Edition 69 June 2010 59

Free copies of The Hep Review required

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5. Separate donations are gratefully accepted Donations of $2 and over are tax deductible

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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: Waged: for people in paid employment

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

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

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

All Hepatitis NSW membership fees are GST exempt.

For health professionals, our membership fees may be tax deductible.

If paying by cheque or money order, please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form to Hepatitis NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt ?

If you would like a receipt for your payment, please tick here 9. Declaration – I accept the objects and rules of Hepatitis NSW and apply for association membership / renewal. I agree to my personal contact details being held by Hepatitis NSW and used in accordance with the association’s privacy policy.

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