#35 Hep C Community News

C

Hepatitis

Community News #35 • March 2007

Focus on Liver Transplants 23/02/2007 10:20:38 AM

Editorial

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk.

Street: Mail: Phone: Freecall: Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1800 021 133 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au

STAFF Acting Manager: Kerry Paterson Senior Administration Officer: Lynn Newman Administration Officer: Megan Collier

For many people living with hepatitis C, the idea of having to have a liver transplant is quite frightening. Even though only a small minority of those with the HCV virus will ever reach a point of being so ill that they need a transplant, it can still loom as something that seems catastrophic.

But there is another side to the story, and that’s one we look at in this issue. Being the recipient of a new liver does not leave you an invalid for life. Instead, it restores quality of life. The interviews we present here show the reality of life after getting a transplant, and it’s far from gloomy.

We also devote some space to the HCCSA itself in this issue. Our manager, Danny Gallant, is moving on and will be greatly missed. We also want to draw your attention to the new membership system—as well as individual members being able to join or rejoin at no cost, we are offering 12 months of free membership to organisations and professionals. See page 9 or the insert for more details. Remember that the more members we have, the more effectively we can campaign on behalf of those living with hepatitis C. A further call for help: Last issue we asked if anyone could suggest an improved name for this publication. Answers came there none. Do you have any suggestions? Let us know at editor@hepccouncilsa.asn.au.

Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Steve Lyn Will Mark Judy Anne Debra Janette Annette Michele Wendy Education Coordinator/Rural Education: Leslie Wightman

Contents Cover: The Gift of Life Garden on Port Road, established as an expression of gratitude and to pay tribute to organ donors and their families (Photos by james Morrison)

Metropolitan Educator: Nicci Parkin Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Maggie Phil My Phuong Lyn Dean

Focus on Liver Transplants 2 Looking Forward to Elephants: Lynn Newman’s Story 4 Libby John and the Liver Transplant Unit 6 “I Have Experienced a Miracle.”

6 Food For When You Can’t Face Food 7 Children of the Transplant Generation

Publications Officer: James Morrison Librarian: Joy Sims

BOARD

Other Features 1 Farewell to Danny Gallant 10 Hep C & Childbirth: Cheryl’s Story 12 Strategies for Preventing Liver Damage 15 Co-infection Update 16 Two Successful Decades of NSPs

Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Treasurer: Thuy Huynh My Le Senior Staff Representative: Kerry Paterson Ordinary Members: Pamela Hanson Enaam Oudih Anthea Krieg Nick Taylor Carol Holly Lisa Carter Nicole Carey

Plus...

1 Brief News 8 Council Update 15 Online Update Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.

We welcome contributions from Council members and the general public.

“Gentlemen, you can’t fight in here! This is the War Room!”

Cover Pages.indd 2

Farewell to Danny Gallant Kerry Paterson pays tribute to the Council’s outgoing manager.

Danny Gallant resigned his position as Manager at the Hepatitis C Council of SA in February 2007. Danny began as Manager at the Council in early 2004, and has worked hard over these past three years to increase the funding base of the Council to provide much-needed resources to increase the Council’s capacity to provide hepatitis C services to the South Australian community.

on a range of hepatitis C issues, including increased access to treatment for people who inject drugs and indigenous people.

He was a driving force in gathering momentum for a coordinated strategic response to hepatitis C in South Australia, and successfully implemented a political advocacy strategy to

engage SA politicians in hepatitis C issues.

The Board, staff and volunteers of the Council would like to thank Danny for his inspirational leadership of the Council, and wish him very well with his studies. We strongly hope that we may see him again in the hepatitis C sector at some time in the future.

Danny was a strong advocate for the interests of people with hepatitis C, both at the national and state level, and represented the interests of South Australians affected by hepatitis C on the South Australian HIV, Hepatitis C and Related Disease Advisory Committee (SAACHHARD), and was Chair of the Hepatitis C Subcommittee of SAACHHARD, as well as having the role of Secretary on the Australian Hepatitis Council.

Danny was a strategic thinker, and extended the influence of the Council in South Australia, initiating partnerships to advocate

Australian Hepatitis Council becomes Hepatitis Australia In February the Australian Hepatitis Council, the national peak body representing the interests of people with hepatitis C, officially changed its name to Hepatitis Australia.

This matches the organisation’s existing website, at www. hepatitisaustralia.com.

New Resource: ‘Hepatitis C in Australian Prisons: A Terminal Sentence?’

Hepatitis C is endemic in Australian prisons. This DVD resource showcases highlights of a panel discussion held in National hepatitis C Awareness Week, October 2006.

The discussion, facilitated by Dr Norman Swan, explores a wide range of issues relating to the prevalence, transmission and treatment of hepatitis C in Australian prisons. It provides a stimulating debate of what should be done to more effectively manage hepatitis C in our prisons.

Single copies of this DVD resource are available free of charge for a limited time. To request a copy of the DVD please email ahcinfo@ hepatitisaustralia.com or call 02 6232 4257.

Hepatitis C Community News March 2007 •

Internal Pages.indd 1

23/02/2007 10:09:12 AM

Looking Forward to Elephants The HCCSA’s Lynn Newman talks about her liver transplant experience.

I was told that I had liver cancer, and that the only chance of survival was a transplant. To do that I had to go through the transplant assessment, which checks whether you’re physically and mentally able to go through the operation. It took about six months to be able to get to the assessment, which then took a whole week. It’s pretty rigorous.

You’re admitted to hospital, and just about every organ in your body, especially your heart and lungs, are looked at. You’re Xrayed, MRI-scanned, everything, and you also have thorough psychological testing. There are a lot of psychological issues that go with receiving a body part from someone else.

After those five days of testing, your results go to a committee, I think, and then I was lucky enough to find out on the Friday, as I was leaving hospital, that I was on the list. I was given my little pager.

You have to carry that absolutely everywhere, and you’re not supposed to be more than a couple of hours away from the hospital, in case you get the call that a liver is available.

For me, the wait between getting the pager and getting the call was about 12 weeks. I went on the list at Easter, and I got the transplant in the June long weekend. The waiting time is really, really weird.

First I felt really edgy, but after a couple of weeks I settled down.

I thought, “OK, I’m in this for the long haul.” My pager went off some time during that 12 weeks— no-one knows why—and there was 10 minutes of panicking before I got Libby at the unit and found out that they hadn’t sent a message.

That brought me back down to earth a bit.

I found after about six weeks that I was almost looking at people to run over with my car, if they looked a possible fit. You just get

sicker and sicker. I knew that my time was running out. With a liver tumour, it has to be under a certain size for you to have a transplant, under 5cm, and mine was 4.9cm at that stage, so I was very aware that I didn’t have long to go.

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

Once I got the call, and had the operation, I woke up in intensive care feeling better than I had in years—mentally and physically.

I was so pleased it had finally happened. I knew I had someone else’s liver, but it didn’t feel like an odd fit—it didn’t feel like a part of somebody else. I just felt a lot fitter, immediately. People were saying how much better I looked, and they actually meant it, not just being nice to someone in hospital.

“Wow, Mum’s got pink skin and shiny eyes—she’s not all yellow!”

I felt fantastic from then on—within 10 weeks I did the City-Bay walk.

And that’s gone from strength to strength. The only thing that holds me back from doing things now is my own laziness. There’s no physical reason for not doing anything.

In my case the liver’s been accepted fantastically. There have been no rejection problems.

There were some medication hiccoughs, getting the dosages right, but nothing directly related to the transplant. The anti-rejection drugs were difficult to begin with, when your body gets used to them, and you’re very nervous of damaging the new liver. For a while, anything that didn’t feel a bit normal I automatically assumed was something terrible. But in my case I’ve come, in a couple

of years, from a very high to a very low dose. I was on over 100 tablets a week immediately after transplant, but now I just take two a day.

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

It’s an opportunity. You can carry on with a great quality of life— there don’t have to be any limits.

I still have hepatitis C, but I now have a perfectly healthy liver.

The hepatitis C can be a lot more aggressive the second time around, so like anyone living with hepatitis C, I’m very careful about drinking.

For me, that’s also out of respect for the person whose liver I have—I don’t want to do anything that could be seen as ungrateful. I so appreciate the value of what I’ve been given.

The whole experience, for me, was incredibly positive. I don’t think I’m the only one. I have known people who have died after transplant—I think they had other complications, which made it much harder for them—but for me it’s been almost too good to be true. I live a normal life now.

I look at the impact it’s had, not just on me, but my family, people I work with, people in the street. For some people I seemed basically dead, and it’s almost as though I just came back to life. I’ve been able to see my children start high school—there’s just so much that the person who decided to donate, their family, have let me see. Every day I wake up wishing there was something I could give back to them. The only thing I can do, I

Hepatitis C Community News • March 2007 Internal Pages.indd 2

23/02/2007 10:09:13 AM

think, is to live, and live well, in honour of what they did for me.

You just have to live each day.

My goal was to get to Africa by the time I was 36. Now, I’m a few

years overdue, but I’m going to get there. I’m going to go and see the elephants. Things like that give you reasons to fight when you’re so sick, when it’s hard to remain positive. For a lot of people, they

don’t have supportive people around them, and it’d be lovely to find some way of addressing that.

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

Interview by James Morrison

Hepatitis C Community News March 2007 • Internal Pages.indd 3

23/02/2007 10:09:14 AM

Libby John & the Liver Transplant Unit Libby John has been a nurse for many years, and recently completed her Masters of Nursing (Nurse Practitioner) in liver transplantation. She has long specialised in this area, having been involved with the Liver Transplant Unit when it started at the Flinders Medical Centre back in 1992, and working with liver transplant units in the UK. She has been the co-ordinator of the Liver Transplant Unit for 12 years.

The Hepatitis C Community News interviewed her at Flinders about the unit’s work and history.

The Liver Transplant Unit “We’re the only liver transplant unit in SA, so patients from the other hospitals, like the RAH and the Queen Elizabeth, come here.

We also have doctors from each of the hospitals come here as part of the unit—we’ve got liver transplant physicians at the Queen Elizabeth and the RAH who can refer patients here. They come to our weekly meetings here, and they also consult in our liver clinic here once a week.

“We follow patients all the way through the process. There are some who are referred to us for transplants, and some who we work up through the process for transplants. Then there’s the transplant operation itself, and after that they continue to see us here for monitoring for the rest of their lives. We usually have around 150 patients, pre- and post-transplant, at any one time.

“The first successful liver transplant was done in 1963, in Denver in the US, and then in 1968 in the UK, at Cambridge. In Australia the first successful liver transplant was in 1985, in Brisbane. State-based liver transplant units started soon after that—Melbourne in 1988, us in 1992, and Perth in 1993.

There’s now one in each State, with SA covering the NT, and Victoria covering Tasmania.”

The Waiting List “The waiting list is slowly getting longer, compared to what it

was about 10 years ago. We always have about 15 patients on the waiting list, and we do 15 transplants or so a year, depending on donor liver availability. Around Australia there are probably about 180 liver transplants each year, with NSW doing the most.

“The waiting time is getting longer, too. There’s a significant shortage of organ donors, although SA has the highest per capita organ donor rate in Australia. There are only about 20 or 30 South Australian donors per year, but not all of those donate their livers, or have livers suitable for donation.

People have to die in certain circumstances—be clinically dead, but the organs still receive oxygen via a ventilator, and the person with no medical history that would be a problem.

“The waiting time is usually a minimum of six months, sometimes less, but it depends on blood group—you have to receive a liver from someone of the same blood group as yourself.

Unfortunately, some people do die on the waiting list before an appropriate liver is available.

‘We’re probably not getting referred everyone we could be at the moment, but we get about 50 referrals a year, perhaps, and only 50% of those would be transplantable. We could easily do 20 transplants a year if we had the donor livers.

“The growing list is probably from more people being referred or identified. And, of course, not everybody referred to us is suitable for transplant—they may have other contraindicated medical or psychosocial conditions. One of the main things that we’re finding, though, is the growing incidence of hepatitis C-related cirrhosis.

Certainly in Australia, and SA, the main reason for transplantation is hepatitis C. There’s particularly a growing incidence of liver cancer in people with viral hepatitis.”

Transplantation “There’s a lot of variation in liver size—the liver actually adjusts to the size of the person it’s in, so a large man will have a larger liver than a 50kg female, for example.

A smaller transplanted liver will grow to accommodate a larger body size. They can shrink a little bit, too, as long as they fit into the abdominal cavity in the first place.

“It is possible to transplant half a liver, which will then grow to the size of a whole liver in a couple of months. It’s one of the few regenerative organs. As long as you have a certain minimum mass, which can perform the functions the liver needs to perform, and that mass is based on your body size. For example, with children, there aren’t enough child livers for transplant, but you can cut down an adult liver, as long as you calculate that you have enough to regrow and do the job. The liver is an amazing thing.”

After Transplant Surgery “The stay in hospital after transplant can be from two weeks to two months, depending on complications. On average, though, it’s two to three weeks. If all goes well, two days are usually in intensive care, and then the rest of the time is on the ward. There we teach transplant recipients about medications and monitor them closely. Then, once they go home, they come back in three times a week for the first month or so to have blood tests and check medication levels. Later on, though, people might only come in every three to six months or so, for monitoring.

“Liver transplantation restores quality of life, but sometimes we exchange one set of problems for another. Liver transplantation is a high-risk procedure, and the anti-rejection medications that we have to give people for the rest of their lives can have side-effects.

They suppress the immune system so that the body doesn’t reject the new liver, but this means that

Hepatitis C Community News • March 2007 Internal Pages.indd 4

23/02/2007 10:09:17 AM

the body can’t fight bacteria and virus the way it used to, so you’re susceptible to infectious diseases, cancers…

And the other thing is that transplantation doesn’t cure someone of hepatitis C, because the virus is still in their body— unless they’ve been successfully treated—so there’s a risk of the virus infecting the new liver, and that does occur in the majority of cases. But the extent to which the virus damages the new liver can vary—for many people that new liver will last for many, many years. You could argue that it took 20 years for the virus to damage your first liver, so it might take another 20 to damage the new one, although with a suppressed

immune system, the virus can be more aggressive, and damage the liver faster.

“We can remove the problems associated with end-stage liver disease—the jaundice, the fluid retention around the tummy, the lethargy, the encephalopathy, the itching, the bleeding, all of those things—but after a transplant you may get infections because of the anti-rejection drugs. We try to keep the drug levels to a minimum, but it’s a balancing act. We titrate drug levels very carefully, and adjust dosages very carefully for each patient on an ongoing basis.

“The chance of surviving a year after a liver transplant here in SA is about 95%. So you have a 5% chance of not getting off the table—perhaps the new liver just doesn’t work, or there’s too much bleeding, they might have a heart attack on the table—but there’s a risk associated with any surgery, even having an ingrown toenail removed. Then there’s a 5-year survival rate of 80%--and not every person is that 20% dies of anything to do with their liver. They might have a heart attack years after the operation, for example, or develop cancer.”

“The issue of whether someone gets a second transplant because the hepatitis C virus has severely damaged their new liver is a tricky one, because that’s through no fault of anybody; it just happens.

So, in theory, we should re-

Rejection “For the rest of your life there’s a risk of rejection. If somebody stops taking their medication 10 years down the track because they feel fine, they will still get rejection.

Pretty much everybody gets a small degree of rejection, but these days it’s pretty rare to lose a transplant from rejection, because the medications we have now are very good. There are some cases which are difficult to treat, but that’s quite rare.

“It’s common to have some acute rejection in the first three months after transplant, which is why we monitor people very closely for those first few months, so that we can pick it up early and give extra anti-rejection medication, and it’s usually pretty easy to treat.”

Education “Education about liver transplantation is important, not just in the general public but in the medical community as well.

We’ve done a lot of education, and we say that when in doubt it’s better to refer people to us, and we can say yes or no, but it’s better to do it that way. Sometimes, for example, people will be referred to us when it’s too late—when they’re too sick for transplant. It’s better to refer people earlier in their disease so that we’re aware of them and they’re assessed by us, even if they don’t need to consider transplantation at that time.’

Interview and photographs by James Morrison

Multiple transplants “People do have more than one liver transplant, for various reasons.

It depends on the reason why their first transplanted liver has failed. If it’s for a technical reason—perhaps an artery supplying blood to the liver has blocked off—then we will redo it, because that’s a technical problem we can solve with a new transplant. If somebody has a failure of their transplanted liver because they started drinking alcohol again, they won’t get another liver.

transplant that person. But what we have to look at is if the virus has attacked that first liver very quickly, then it will do so again to any other liver we put in. The survival rate for each successive transplant reduces. So if we’re looking at a 5-year survival rate of 80% for a first transplant, it’s only 60% for a second, and so on. We have to weigh that up—does someone want to go through the transplant again, do we have enough livers, and so on.

Fortunately we haven’t had to do re-transplantation much in SA.”

Hepatitis C Community News March 2007 • Internal Pages.indd 5

23/02/2007 10:09:20 AM

“I Have Experienced a Miracle.”

A recent liver transplant recipient talks about their experience.

I was placed on the waiting list and transplanted a week later. By this time I was so ill with encephalopathy, liver and kidney failure and in and out of consciousness that what I really felt was profound confusion and distress. I was vaguely aware that I was dying and I would panic internally but I couldn’t verbalise it. At some stage the pain and vomiting stopped and I was able to reach a state of calm.

The person who really went mad was my partner. He would hold me and talk to me of hope for our future together but then leave the room in a complete state of desperation to find out if a liver had been found. I was very conscious of my partner’s pleading and negotiation with the transplant team, and I wished that I hadn’t brought this onto him. There was a feeling of finality on that Friday, many goodbyes to family, and then

my memory fails me. I woke up two days later with a new liver.

I have very little memory of the first few days post-op when I was in intensive care. I do, however, recall marvelling that I was alive, but this was tempered by the knowledge that someone died in order for this to happen. It was a very strange place to be in and nothing in life prepares you for that. I do believe I have experienced a miracle. By day three I became delirious from the medications I was given and the trauma of the surgery so this period was marked by some strange behaviour and beliefs where I actually felt survivor guilt and unworthiness. I’m glad that has passed.

My life was saved and now my life expectancy is normal—it has been a gift that I will forever cherish. For anyone going through it, I would

say that I needed to have complete trust in my loved ones to help me through this, because at some point I lost control over my body and mind. My advice is to plan your care team early and engage them in every step along the way, because no-one can do this alone.

I’ve taken a lot of medication in my life, including interferon, and for me the anti-rejection medication is a walk in the park. Initially, I did experience a tremor and mild headache, but these symptoms have abated over time.

The only misconception I can think of is that there is some common understanding of what happens to people engaged in the process.

It is most likely as unique as each individual who goes through it. I am still going through the process less than six months after the transplant, and I expect to be doing it for a lifetime.

Food For When You Can’t Face Food This is a really cheap, easy-tomake, tasty dish that is easy to eat when you have no appetite due to liver failure (or any other reason for no appetite, I guess). It is a good comfort food. It’s healthy, easy to digest, and does provide your body with something to help sustain it. If you’re too sick to cook, a friend or relative could help, or it can be purchased in some Greek delicatessens.

In a heavy saucepan, cook the cold milk, rice, sugar, and butter over low heat, stirring frequently until thickened, for approximately 1 hour. If you want to include the cinnamon stick and cloves for flavor, add them during the last 15 minutes.

Remove from the heat. Remove the cinnamon stick and cloves, if included.

Stir in the vanilla and beaten eggs.

Return to heat again, making sure it’s well folded in, and cook on low heat for another 5 minutes.

Pour into dish. Sprinkle with ground cinnamon, cool at room temperature, then refrigerate. Serve cold.

Lynn Newman

RIZOGALO (Greek Rice Pudding) Serves 8 8 cups milk 1 cup raw long-grain white rice ¾ cup sugar 4 tbsp butter 1 cinnamon stick (optional) 3 whole cloves (optional) 1 tsp vanilla essence 2 eggs, slightly beaten ground cinnamon

Hepatitis C Community News • March 2007 Internal Pages.indd 6

23/02/2007 10:09:22 AM

Children of the Transplant Generation A look at the present and the future For more than forty years transplant recipients have been parenting children. There are now many thousands of children who only entered the world after one or the other of their parents underwent organ transplantation.

Long-term studies of pregnancy following transplantation now provide sound evidence of the safety for both the recipient and the children following transplantation.

Risks Risks are involved in pregnancy following transplantation and it is ideal for conception to occur two years after transplantation, and only after a long period of stable health, free from rejection episodes, infection or changes in drug therapy.

The risks include: • rejection, • loss of the organ, • loss of life, • complications in pregnancy, • changes in rejection therapy levels, • miscarriage, and • marital stress.

and premature births. There is also a much higher rate of caesarean section. This is most common in renal transplant recipients, as the obstetrician and renal surgeon prefer to deliver the baby through the abdominal wall rather than risk injury to the transplanted kidney or ureter, and so of less concern to people who have had a liver transplant.

Importantly, the miscarriage rate is low, and foetal development abnormalities are no more frequent than in the general population.

The Really Good News Now that some of the recipients’ children are mature adults, we can report that the long-term outcomes of conception after transplantation are excellent. There is absolutely no evidence of increased rate of incidence of cancer or other genetic diseases.

The main thing to remember, of course, is that there is a risk of inheriting the disease which precipitated the organ disease in the parent—but this would be the

case whether or not the parent had received a transplant. There are some special concerns for people who have received lung transplants, but these do not apply to people who have received liver transplants.

Organ Donor Awareness After receiving an organ transplant, parenting is the next most wonderful outcome for a recipient. While organ donation is controversial to some people, every effort should now be made to bring to the attention of the world the joy of parenthood which follows organ donation. In the future, all involved in organ donation and transplantation should make the world aware of the “children of transplantation”.

Organ donation is indeed, a gift of life to many generations now.

Associate Professor Daryl Wall AM Medical Director of Transplant Australia

The main concern, of course, is the influence of the drug therapy on the mother during pregnancy and on the foetus during development.

In addition, the drugs may alter the genetic make-up of the child, which in turn may create problems for that person at some point during their life. Therefore, there was concern that the drugs may damage the father's genetic structure, which may obviously lead to problems for the child.

The Good News Studies throughout the world reveal that all but the most modern of immunosuppression medications have been demonstrated to not cause maternal or foetal problems.

Pregnancies proceed predictably.

However, there is an increased risk of hypertension, pre-eclampsia Hepatitis C Community News March 2007 • Internal Pages.indd 7

23/02/2007 10:09:23 AM

council news

New HCCSA Board The Annual General Meeting of the Hepatitis C Council of SA was held on Tuesday 28 November 2006 at the Fullarton Park Centre. The guest speaker was Mr Leigh Garrett, CEO of Offenders Aid and Rehabilitation Services SA. He presented on Hepatitis C and Prisons, which stimulated many questions and a robust discussion amongst members present at the AGM. The new board of the Hepatitis C Council was also elected. The board members are as follows: Chairperson:

Arieta Papadelos

Vice Chairperson:

Catherine Ferguson

Secretary:

Position currently vacant

Treasurer:

Thuy Huynh My Le

Members:

Carol Holly Dr Anthea Krieg Enaam Oudih Nicholas Taylor Lisa Carter Pamela Hanson Kerry Paterson

If you wish to contact the Board of the Council for any reason, please write to: Secretary Hepatitis C Council of SA PO Box 782 Kent Town SA 5071

Resources The Hepatitis C Council of SA has a library with hundreds of books, magazines, research papers, CDs, DVDs and videos relevant to people dealing with hepatitis C. Free broadband internet access is also available in the library to members of the community during office hours.

The library catalogue is online. It contains all of the items in our collection. If you are interested in an item please email us, or use the enquiry form on the webpage. Go to http://www. hepccouncilsa.asn.au/websearch.html to begin!

The Council also has dozens of printed resources in stock, many of which we have produced ourselves, and others of which are provided by hepatitis councils and medical organisations around Australia. To see what we can offer, and to place a free order, visit http://www.hepccouncilsa.asn.au/resources.html.

Hepatitis C Community News • March 2007 Internal Pages.indd 8

23/02/2007 10:09:25 AM

council news

We Need Your Support!

Become a member of the Hepatitis C Council of South Australia How does becoming a member help?

In 2006 the Hepatitis C Council of SA initiated a series of meetings and briefings about hepatitis C issues with our state politicians.

The Council’s Board members and staff met with The Minister for Health, John Hill, the Minister for Correctional Services, Carmel Zollo, and advisors to the Minister for Mental health and Substance Abuse, Gail Gago.

The Acting Manager of the Council, Kerry Paterson, and C Talk speaker Lynn Newman also had the opportunity to provide a briefing on hepatitis C issues to around 30 Opposition Members of Parliament

Membership is zero-cost in 2007! and another session to around 6 members of the government.

In October 2006, the Minister for Health announced that the South Australian government would work towards the development of a State Action Plan to address hepatitis C, supported by the whole of government.

This SA Hepatitis C Action Plan will be developed during 2007, and the Hepatitis C Council of SA plans to build the momentum during the year, targeting politicians and others in leadership

roles across the government and non-government sectors to raise the profile of hepatitis C, make them aware of the issues and present arguments for increased resource allocations to implement the SA Hepatitis C Action Plan.

Having the support of a large membership really assists our advocacy role!

Membership forms for Organisations and Professionals are included in this edition of the Hepatitis C Community News, and for Individuals on the back cover.

Workforce Development Project The Education team at the Hepatitis C Council is currently undertaking a needs assessment to identify how best to develop and improve the hepatitis C education of those organisations (and workers) who work with the Hepatitis C Priority Population Groups.

In case you haven’t read the Australian Government’s National Hepatitis C Strategy 2005-2008 lately, the priority population groups are defined as: • People who inject drugs • Young people • People from culturally and linguistically diverse (CALD) backgrounds

• People in rural and remote areas • People in custodial settings • Aboriginal and Torres Strait Islander people We are currently surveying and speaking to different organizations (both government and nongovernment) who have clients from these population groups to see how hepatitis C can become a sustainable part of their workforce development. In the coming weeks key organizations will receive an electronic survey with

questions on hepatitis C and workforce development. The results of this survey will help develop the planning of HCCSA education services and ultimately strengthen the capacity of workers on the ground.

We are hoping that this research will be completed by the end of March so stay tuned to Hep C Community News to find out more.

For more information contact Kristy Schirmer, Education Researcher, at kristy@hepccouncilsa.asn.au, or phone 8362 8443 or 1800 021 133 (regional callers) Stay tuned for the results!

Strengthening relationships Strengthening workforce development Strengthening hepatitis C education

Hepatitis C Community News March 2007 • Internal Pages.indd 9

23/02/2007 10:09:29 AM

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

I finally told my local doctor. I thought he would be understanding and not judge me. I told him that I had formerly used heroin, and that I had been on methadone during my last pregnancy. The doctor asked me if I had been using any kind of drugs during this pregnancy.

I told him I hadn’t used for over eight months. I also told him I had hepatitis C, and asked what this would do to my body while I was pregnant. The doctor got angry at me for not telling him earlier that I was HCV-positive. He wrote ‘HEPATITIS C’ in big red letters on the front of my file, then said not to worry and that everything would be fine. He said that when the baby was born it would be tested to see if it had contracted the virus.

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

was admitting me to hospital until I gave birth to the baby. I would be on Ventolin. He also agreed to do some more tests.

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

the tears that this had nothing to do with heroin or any other drugs. I yelled, “I am in pain, I am scared and I don’t know what’s happening”. The doctor yelled back at me to wake up to myself.

“You’ve already given birth twice before, and if you don’t snap out of it now, then how will you be when you really do go into labour

The next morning I was given blood tests and a urine analysis test. I was told that I needed to do them because of the infection and the hepatitis C, so I was willing to do the tests. It was 10pm on New Year’s Eve. My family had been visiting, and they left. As they were leaving I was getting some cramps in my stomach and lower back. I had my Ventolin but didn’t finish it all as the pain was too intense. I got hold of a midwife. All she did was give me two Panadol. This got me really upset as something didn’t feel right and I was in pain and two Panadol were useless.

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

Finally he started to check me over, listening to parts of my body and checking the baby. He said I had a chest infection and that he

My doctor was on duty that night and he arrived in less than five minutes, asking what the problem was. I explained that I was in pain and I wasn’t quite sure what was happening. The doctor yelled at me, telling me there were people who really needed him in Emergency, and that he wasn’t there just for me. I got upset and started to cry. He said, “What do you want? What pills do you need?”

He wrote ‘HEPATITIS C’ in big red letters on the front of my file, then said not to worry...

I was speechless. He continued by saying, “Did your partner have some heroin and you missed out?

Is that why you need something now?” I let loose. I yelled through

and give birth?” He said that he had some other patient to see and would be back in 10 minutes.

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

I said to him that it was no use, and with the way I said it and the look on my face the doctor knew

Hepatitis C Community News 10 • March 2007 Internal Pages.indd 10

23/02/2007 10:09:30 AM

something was up. He pulled my sarong open and there was the baby’s head showing. The doctor started yelling for help, but noone showed up. I was sitting there with my legs open seeing exactly what was going on. The thing was, my waters hadn’t broken and the doctor knew that the baby was coming with or without them being so. He told me that he had to break the waters with his nails. He

..the doctor told me that the baby’s hepatitis C test results had come back positive.

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

I wanted to get in contact with my partner and tell him about the birth. The nurses allowed me to ring him from the nurses’ station.

My file happened to be sitting on the desk, and of course after seeing my name on the file and papers, I read what was in it. I couldn’t believe my eyes. All the tests that the doctor had ordered to be done were tests for drugs: every drug you could think of. Of course they all came back negative, but what really upset me was that there wasn’t one test done on my hepatitis C. The doctor had not asked permission, let alone admitted to doing them. He told me he did it because he thought I was using and he had to think of the baby. It didn’t make me feel any better.

did this and a few seconds later the baby came out: a beautiful baby girl.

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

The next day my room was still dirty with blood. The nurse on duty had changed the sheets on the bed but left the dirty ones in the bathroom so the cleaners could take them. The bathroom had blood in the shower and on the floor from when I gave birth. There were towels in there covered with blood and afterbirth, which I had to clean up myself from the floor in my room. Even the chairs had blood and whatever else on them.

The cleaners didn’t want to clean my room because they knew I had hepatitis C, and with all the blood they weren’t going near my room.

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

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

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

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

He said that if I had a problem then I should have contacted him.

I was then admitted to hospital on Australia Day with a pelvic infection.

The staff could not believe the baby had been delivered in such an unsterile manner, and that I had never even been prescribed an antibiotic.

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

Hepatitis C Community News March 2007 • 11

Internal Pages.indd 11

23/02/2007 10:09:31 AM Visit http://www.positivenotpunitiv details.

Strategies for Preventing Liver Damage Linda McInnes examines a comprehensive study Most people I know with hepatitis C worry about what they can do to slow down the progress of their illness. Very few studies have looked at this issue and of those that I could find only one looked at it in great depth (Riley, 2001part 1 & 2).

Although intended to be used as a reference for GPs, the information in this article is valuable for people with hepatitis C. It looks at the hepatotoxic (damaging to the liver) effects of herbal remedies, vitamins, vaccinations, alcohol and medications. I have not included some of the more technical information, or material related to conditions besides hepatitis C.

Strategies for slowing progression to cirrhosis In Australia the progression rate to cirrhosis is 7% in 20 years and 20% in 40 years. (HCCNSW Medical Research & Advisory Panel, 2005).

Alcohol: Alcohol consumption is associated with a faster progression towards cirrhosis, and it can result in hepatocellular carcinoma (liver cancer) and death. Even small amounts of alcohol can cause damage to the liver, and where possible people with hepatitis C should be encouraged to stop drinking completely.

Riley notes that in one study they found that alcohol in patients with hepatitis C can cause cirrhosis to develop faster, can cause the virus to replicate, can affect the immune system and can interfere with iron content and regeneration of the liver.

Alcohol also decreases the response to interferon. It has now been found that alcohol increases the toxicity of vitamin A, which can cause steatosis (fatty liver), perisinusoidal fibrosis (a vascular liver lesion), chronic hepatitis and cirrhosis.

Vaccinations: If you are not immune to hepatitis A or B, it is recommended that you be vaccinated against these. All patients who are hepatitis C-positive should be checked for hepatitis A total antibodies and hepatitis B surface and core antibodies. To not be vaccinated against these is to put oneself at risk.

In one study of co infected people, the mortality rate was 35%.

Toxic Medications: Many people with hepatitis C also suffer from other illnesses or disorders which require them to take medication. Many medications (both prescription and over-thecounter) can be quite toxic to the liver (see Box 1). Riley notes that, for example, taking paracetamol on an empty stomach or with alcohol can be harmful. Eating regularly will help avoid this as well as help you absorb any other medication or supplements you are taking. If you are in pain, paracetamol is still the best option, with a safe dosage being 500mg four times a day (2g daily).

Hidden dangers: Echinacea may contain concealed nasties.

Hepatotoxic Vitamins and Supplements: Many vitamins and supplements can cause damage to the liver depending on the dose.

One study in the USA found that up to one third of the patients in a liver clinic used herbal remedies.

One of the most hepatotoxic vitamins is vitamin A, and anyone taking vitamin A supplements should be aware that doses higher than 25,000 IU (international units)

Hepatitis C Community News 12 • March 2007 Internal Pages.indd 12

23/02/2007 10:09:32 AM

Box 1: Toxic Medications Muscle relaxants Psychotropics (drugs which alter the mind, eg antidepressants) Anticonvulsants (drugs which prevent or reduce the severity of convulsions) Lipid-lowering drugs Oral antidiabetic agents (therapy for type-II diabetes) Oestrogens (steroid hormones developing and maintaining female characteristics of the body; produced artificially for use in oral contraceptives, etc) Anabolic steroids (synthetic steroid hormones used to increase muscle size) Antituberculous agents

per day may be dangerous. Most multivitamin preparations contain 4,000 IU vitamin A, which is well within the safety range. One of the few supplements which has been shown to be beneficial to the liver but without any toxic effects is milk thistle (Silybum marianum), and there is no evidence of toxicity related to the pure form of milk thistle.

Diet & Exercise: If you are a diabetic or are overweight you need to be particularly careful, especially if the fats in your liver account for more than 5% of the weight. It has been shown that following a supervised low-fat diet and exercise program can minimise the risk of fatty liver.

Strategies for slowing progression to end-stage liver disease In Australia the progression rate to end-stage liver disease is 1% in 20 years, and 4% in 40 years (HCCNSW Medical Research & Advisory Panel, 2005).

Varices and Bleeding: Varices (swollen veins in the oesophagus and stomach) can be found in 60% of patients with cirrhosis. A endoscopy is recommended to detect varices or bleeding. This should be repeated every year or two to assess the risk of bleeding.

As a preventative treatment, beta blockers have been shown to reduce the risk of variceal bleeding from about 45% to 22%. Other preventative treatments may also involve oesophageal banding (a band is used to tie off the bleeding portion of the vein) or sclerotherapy (a drug injected into the bleeding vein causing it to narrow).

Screening for Hepatocellular Carcinoma: Patients with cirrhosis should also be screened for liver cancer. This can be done by ultrasound with serum alphafetoprotein testing. In order to improve early detection, these should be performed together, and on a regular basis as this is the leading cause of death in patients with cirrhosis.

Vaccinations: Patients with cirrhosis are advised to have vaccinations against infections such as peritonitis and pneumonia, and also yearly vaccinations against influenza.

Diet: It is important to reduce salt intake, as failure to do so can cause development of ascites.

It is important that people with cirrhosis follow a sodium-restricted diet (less than 2g per day). Apart from developing ascites, people with cirrhosis can develop malnutrition, and it is advised to have 1-1.5g of protein a day.

Continued on next page

Hepatitis C Community News March 2007 • 13 Internal Pages.indd 13

23/02/2007 10:09:35 AM

Strategies for Preventing Liver Damage However, if you have advanced cirrhosis you can develop encephalopathy (inflammation of the brain) if you eat too much protein at one time. Therefore, at this stage, you should have small servings of protein throughout the day to bring the level up to 1g daily.

Ascites and Spontaneous Bacterial Peritonitis: Cirrhosis can lead to portal hypertension (an increase in the pressure within the vein which carries blood from the digestive organs to the liver), low albumin (water-soluble proteins found in blood), and increased sodium retention (which can cause the development of ascites, which is a swollen accumulation of fluid in the abdominal cavity).

Ascites is the most common form of clinical deterioration and complications such as peritonitis (inflammation of the abdomen) and renal (kidney) insufficiency can worsen the long-term outcome.

Once you develop ascites it is recommended that there be an evaluation done for liver transplantation. Patients with newonset ascites or clinical deterioration may have an operation called paracentesis, where an incision is made to remove fluid or gas.

Peritonitis is usually treated with antibiotics. Treatment should be ceased after 6 months to avoid the development of antibiotic resistance.

I hope this article will be of some benefit to all readers. I would like to thank Wanda Dillon from the Department of Human Resources Library for her assistance with this research, and Doug Mellors for his valuable help in setting out this article.

Linda McInnes

Box 2: Toxic Vitamins, Supplements & Herbal Remedies Amanita (wild mushrooms) Asafoetida (plant, comes in powder, tablet or oil form) “Bush” herbal teas Chaparral (a potent antioxidant) Comfrey (used in organic gardening, having many medicinal and fertiliser uses) Echinacea (used in various herbal remedies and teas) Gentian (used in tonic liquor, and as flavouring in ‘bitters’) Germander or Teucrium (a herb) Iron (patients with chronic liver disease tend to accumulate excessive iron amounts in their liver parenchyma) Jin bu huan (traditional Chinese herbal mix used as a sedative and analgesic) Mistletoe (used to treat circulatory and respiratory system problems and cancer) Nicotinic acid/Niacin/Nicolar (a form of vitamin B, available over the counter as vitamin B3).

Pennyroyal (oil or tea, can cause serious liver and kidney problems) Senna fruit extracts (a laxative) Valerian (herbal sedative) Vitamin A (if you are taking multivitamins, vitamin A might already be included in this, so make sure that you are under the recommended limit)

Continued

Box 3: Preventative measures Complete abstinence from alcohol Avoid toxic medications Avoid iron supplements unless you have anaemia (multivitamins without iron should be used) Assessment of vitamins and herbal remedies for safety Eat low-fat, ‘heart-smart’ diet Have an endoscopy yearly to screen for oesophageal varices Have alpha-fetoprotein testing every six months and ultrasonography yearly to detect early hepatocellular carcinoma Avoid elective surgery once signs of liver decompensation develop REFERENCES: HCCNSW Medical Research & Advisory Panel, 2005 in report “Estimates & Projections of the HCV Epidemic in Australia 2002.

Riley, T.R. & Bhatti, A.M. Preventative Strategies in Chronic Liver Disease Part 1. American Family Physician (2001) Vol. 64(9):1555-60.

Riley, T.R. & Bhatti, A.M. Preventative Strategies in Chronic Liver Disease Part 2. American Family Physician (2001) Vol. 64(10):1735-40.

Is there an area of hepatitis C research you would like to see covered? Is there something you just can’t find out about, no matter where you look?

Get in touch with Linda or Doug Mellors via the Council.

Are you happy with your GP? If you are, we need to hear from you.* We are updating our Hep C-friendly GP list for metro and rural areas.

Please call Deborah on 8362 8443 or 1800 021 133 (SA regional callers). *We approach GPs for permission before putting their names on our list; and we do not reveal who nominated them.

Hepatitis C Community News 14 • March 2007 Internal Pages.indd 14

23/02/2007 10:09:36 AM

Co-infection Update A look at recent research on hepatitis C co-infection Last year we looked at some of the issues facing people living with both hepatitis C and hepatitis B. Since then, several studies have been published looking at this and other forms of HCV co-infection.

Hepatitis B/Hepatitis C Coinfection Due to common or connected risk factors, many people living with one form hepatitis have also been infected with another. In the Autumn 2006 edition of the Hepatitis C Community News we looked at hepatitis B/hepatitis C co-infection. This information is available from the HCCSA as a fact sheet, and the relevant issue of this magazine can be downloaded from our website.

Since then, however, several other studies have been published which explore co-infection further.

The December 2006 European Journal of Gastroenterology and Hepatology details one such study, and draws the following conclusions.

• The effects of co-infection are due to both viruses interacting with the host’s cells, as well as with each other, and with the body’s immune system.

• Infection with hepatitis C lowers the body’s response to both hepatitis A and B vaccines.

• Hepatitis B infection increases the risk that someone living with chronic hepatitis C will develop hepatocellular carcinoma.

• Treatment which suppresses the hepatitis C virus in someone who has been coinfected may result in the hepatitis B virus flaring up again.

• It’s important that someone who has tested positive for HCV antibodies but negative for HCV RNA also be tested for hepatitis B (and D).

This backs up some of the findings of research published in the Journal of Viral Hepatitis in March 2006. This overview of earlier experiments found that HCV/HBV co-infection led to an increased risk of developing hepatocellular carcinomas (a risk that was even bigger than the risks from each separate virus added together). However, the report’s author, M. C. Kew, noted that the reasons for this were unclear.

Kew also pointed out the “rarity of concurrent infection with HBV

and HCV in individuals without clinically evident liver disease”—in other words, not enough studies have been done on people with co-infection.

HIV/Hepatitis C Co-infection A group of studies indicate that people living with both hepatitis C and HIV experience faster liver disease progression than those with hepatitis alone. They may also have greater CD4 cell (a ‘T helper cell’)depletion and slowed CD4 cell recovery. November 2006’s Clinical Infectious Diseases prints a study which suggests this may be part of a complicated relationship between CD4 cells, T-cells and the viruses.

Hepatitis B/Hepatitis C Coinfection A study published in the December 2006 Journal of Hepatology looks at people coinfected with hepatitises C and A. From a small sample group (only 17 people), they concluded that hepatitis A superinfection is associated with decreased hepatitis C RNA replication, “which may lead to recovery from HCV in some individuals”.

James Morrison

Online Update In the last issue of the Hepatitis C Community News, we looked at Hep C Australasia, an Australian and New Zealand online peer support forum for people affected by hepatitis C, as well as their family and their friends.

That site has now been moved and updated, and can be found at http://hepcaustralasia.org/index. php.

A new website, ‘Positive, Not Punitive’, has been set up by the Australian Injecting and Illicit Drug Users League at http://www. positivenotpunitive.com.au/.

It’s designed to provide basic hepatitis C information to members of the public and to the media, and it is well worth a look.

The Big Combo is a hepatitis C treatment-related video produced by the Hepatitis C Council of

NSW in partnership with the NSW Health Department, and with the support of unconditional grants from Roche and Schering-Plough.

The doco-drama follows the stories of two people: Matt and Lily, and explores the issues involved in each person’s decision whether or not to undergo hep C treatment.

It features interviews with several well-known Australian clinicians.

To view the video, go to http://www.hepatitisc.org.au/ resources/inforesources.html.

Hepatitis C Community News March 2007 • 15

Internal Pages.indd 15

23/02/2007 10:09:36 AM

Two Successful Decades of NSPs On 13 November 2006, leading health professionals gathered in Sydney to mark the 20th anniversary of the first public needle and syringe program (NSP) in Australia. Established at the Alcohol and Drug Service of St Vincent’s Hospital in Darlinghurst, Australia’s first NSP was illegal—and only got off the ground as the result of an act of reluctant civil disobedience due to numerous failed attempts to obtain government approval for a pilot program.

I worked for Dr Wodak at St Vincent’s Drug and Alcohol Service at the time of the program’s establishment. I remember the sense of urgency of all those involved in creating this lasting public health initiative: In 1986 Australia’s first publicly declared needle and syringe exchange program for injecting drug users opened its doors in Darlinghurst. It was a courageous act of civil disobedience instigated by the Director of the Drug & Alcohol Services at St Vincent’s Hospital, Dr Alex Wodak. With the support of some of his staff (Kate Dolan and me), local activists and local drug users, and very importantly the tacit support of the Sisters of Charity who operate St Vincent’s Hospital, the fight to protect Australians from HIV opened on a new and controversial front. The decision of NSW Police at the time to treat the service as an ‘unofficial trial’ and not take action against the staff or users attending the exchange was also both sensible and vital.

as in many other countries, to take the necessary step of providing sterile equipment for people who inject drugs. Their rationale was insufficient evidence that needle exchanges work; and that needle exchanges would send the wrong message about illicit drug use.

However, significant injecting drug use had existed in Australia long before needle exchanges.

There was an imperative to start doing something urgently before HIV infection reached a point of critical mass amongst people who inject drugs and then inevitably spreading to the general community.

Dr Wodak took the step of opening the doors publicly to Australia’s first unofficial needle exchange program, after numerous unsuccessful attempts to get permission to start an official pilot program.

The NSW government of the day was thrown into a panic by the decision. Could they really arrest health officials for trying to stop the spread of HIV infection? To be fair, this day represented a real public shift in the approach to drug use in Australia. The goal of achieving abstinence was still just as valid but there was now also a complementary goal: to protect the health of people while using illegal drugs, even if they had not reached the point of stopping. Eventually common sense won out and the program was given trial status by the government to allow it to operate legally.

In time, all

eight governments in Australia were able to see that needle exchanges actually saved lives and resources by keeping our HIV rates to one of the lowest in the world. This has meant that in Australia, HIV infection is very rare among people who inject drugs and the wider community. In some countries, where NSPs were not established in time, HIV spread rapidly among injecting drug users and to the wider community through sexual contact.

The contribution from NSPs across Australia is now estimated to have saved thousands of lives and prevented thousands of HIV infections and other diseases.

As many as 25 000 cases of HIV and 21 000 cases of hepatitis C were avoided between 1990 and 2000 in Australia. As a result, the savings to the health system were estimated to have been between $2.4 and $7.7 billion.

The evidence is unambiguous: NSPs are a huge success and although the level of support among many in positions of power and influence can be limited, this 20-year anniversary celebration will hopefully mark the beginning of a new era of acceptance.

Gino Vumbaca Executive Officer of the Australian National Council on Drugs Courtesy of Of Substance, Jan 2007

From the early 1980s there were increasing reports from around the world that HIV was spreading among people who inject drugs.

It was also being reported that this was providing a new avenue of HIV infection into the young sexually active heterosexual population. Despite these reports there was an overwhelming reluctance for leaders in Australia, Hepatitis C Community News 16 • March 2007 Internal Pages.indd 16

23/02/2007 10:09:39 AM

Useful Contacts & Community Links Hepatitis C Council of SA Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council.

Call the Council’s Info and Support Line for information on (08) 8362 8443 or, for rural SA callers, 1800 02 11 33 (freecall).

MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds.

(08) 8223 4566 Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic.

(08) 8223 5011

Clean Needle Programs To find out about programs operating in SA, contact the Alcohol and Drug Information Service.

1300 131 340 Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809 SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet.

(08) 8334 169 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support.

Freecall: 1800 621 780 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers.

(08) 8334 1666

Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program.

(08) 8447 8821 The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can recieve priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443.

Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities.

(08) 8362 0395 AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community.

(08) 8334 1611

Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services.

The Council offers a meeting room suitable for workshops, presentations, formal and informal meetings. It is a spacious area suitable for up to 30 participants.

Meeting Room Hire at the

The room has modern, self-contained kitchen and bathroom facilities.

It also contains an electronic whiteboard, and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability).

Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.

Community members affected by hepatitis C are encouraged to use the room at no cost.

Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au

23/02/2007 10:20:40 AM

Become a

member

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. A strong membership of people affected by the virus is essential to our work.

Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071 or fax: (08) 8362 8559.

Your details Member type (tick one) Title

 New

 Renewing

Name

Occupation Organisation (if applicable)

Mailing address

Postcode

Phone Fax Email

It’s renew a

Membership type  FREE!

Individual Membership

Donations Would you like to make a donation?

 Yes

If yes, how much?*

$

 No

*GST does not apply. Donations over $2 are tax deductable.

The Hepatitis C Council of South Australia Inc. is aware of the need for privacy and endeavours to comply at all times with the Privacy Act 2001. As such, any information provided by you is accessed only by authorised personnel and will remain strictly confidential. To change or access any personal information we hold about you, please write to the Manager at the above address.

ABN: 38 030 552 547 Tax invoice – please retain a copy for your records.

Proudly supported by:

Cover Pages.indd 1

l time!

Please fill in this form so that we have yo ur up-to-da te details.