Good Liver March 2013 by Hepatitis Victoria

The Newsletter of Hepatitis Victoria

March 2013

Good Liver Liver transplantation

Applying for a liver â&#x20AC;&#x201C; the hows and whys

Staying well after a liver transplant

Personal stories from liver transplantees

Julie Pavlovic, Liver Transplant Coordinator, explains the process leading to a liver transplant.

Itâ&#x20AC;&#x2122;s vital that post-transplant patients are engaged in their health care to make the most of this new opportunity.

Frank Carlus and Shane Laffy share their experiences of having liver transplants and gratitude to their donors.

Contents

Contact and postal address:

Staff contacts:

Hepatitis Victoria

Melanie Eagle

Suite 5, 200 Sydney Road, Brunswick, Victoria. 3056

CEO Telephone: 9385 9102 melanie@hepvic.org.au

Telephone: (03) 9380 4644 Facsimile: (03) 9380 4688

Garry Irving

Email: admin@hepvic.org.au Website: www.hepvic.org.au

1800 703 003

In the news

Applying for a new liver – Position description Julie Pavlovic outlines the process leading to performing a liver transplant.

Ofﬁce Coodinator Telephone: 9380 4644 admin@hepvic.org.au

Felicity Omar

Autumn 2013 Good Liver is produced by Hepatitis Victoria. The opinions and language expressed in this magazine are not necessarily those of Hepatitis Victoria or the Department of Health. Images used in this newsletter are sourced from StockXchng stock photo library at: www.sxc.hu/. Images are used for illustrative purposes only and have no connection to hepatitis.

Reader response Your comments or experiences in regard to any articles in the Good Liver are welcome. Call, write or email: ray@hepvic.org.au

Project Coordinator Hep C: Take Control Program Telephone: 9385 9106 louisa@hepvic.org.au

Jessie Di Blasi Development Coordinator Telephone: 9385 9123 jessie@hepvic.org.au

Fred Negro cartoon Lily Liver moves into her new home!

Organ donation by people with hepatitis People with hepatitis can donate their organs to medicine? Myth or reality?

Garry Sattell Community Participation Program Telephone: 9385 9110 garry@hepvic.org.au

A personal story – Shane Laffy With a song in his heart, Shane Laffy tells of his liver transplant and sings praises to his organ donor.

Aboriginal Program Telephone: 9385 9108 felicity@hepvic.org.au

Louisa Walsh

A personal story – Frank Carlus Frank Carlus tells his story – all the lows and highs of going through a liver transplant.

Isabella Natale Young People’s Project Ofﬁcer Telephone: 9385 9111 Isabella@hepvic.org.au

Crunching the numbers – Liver transplant statistics Chronic hepatitis C causes more liver transplants in Australia than any other condition.

Amy Kirwan Prison Project Ofﬁcer Telephone: 9385 9108 Amy@hepvic.org.au

Liver 2.0: Service and maintenance guide It’s vital that post-transplant you are involved and engaged in your health care to make the most of this new opportunity.

Alex Taylor Prisons Program Telephone: 9385 9104 alex@hepvic.org.au

Communiqué From the desk of the Chief Executive Ofﬁcer.

Programs Manager Telephone: 9385 9109 garryi@hepvic.org.au

Lisa Nulty

HepatitisInfoline

15 15

Aboriginal Program report Moving in – Amy Kirwan Our new Prisons Project Ofﬁcer

16 17 18 19 20 21

Young Blood Hep C Connect – A case study Hep C: Going Viral Hepatitis Victoria membership Liver clinics list Contacts

Communiqué From the desk of the Chief Executive Officer

While fortunate that the medical expertise

of Good Liver we pay tribute to the people

exists to provide transplants – and you can

who have undergone this life saving

read some positive personal accounts in the

procedure. We also think of the people with

following pages – liver transplants arising

serious liver disease who never get a chance

from chronic viral hepatitis is actually some–

to access treatments like transplantation, and

thing in theory we should not even need to

that fact that with improvements in treatments

discuss. If people with viral hepatitis were

and services end-stage disease in viral

being tested, diagnosed, and able to access

hepatitis is largely preventable. We bear

treatment and monitoring early, and if society

all this in mind as we strengthen our efforts

invested in new and more effective treat–

to achieve and deliver on our new

ments, fewer people with hepatitis B or C

strategic goals.

would reach end stage liver disease, and we would see a drop in demand for transplantation for people with viral hepatitis.

Warm regards

Melanie Eagle CEO

But instead the facts are these:

• One third of liver transplants in Australia

elcome to the ﬁrst edition for 2013 of

Good Liver – the quarterly newsletter of Hepatitis Victoria. This edition comes at an exciting time. At the end of last year the Board of Hepatitis Victoria adopted our Strategic Plan which will guide the work of the organisation for the years 2013 to 2017. Our vision at Hepatitis Victoria is a Victorian

are due to chronic hepatitis C, and with the increasing prevalence of chronic hepatitis B in our community, the proportion of transplants being for people with viral hepatitis (B and C) will only rise.

• While 500 Australians and New Zealanders die each year from the complications of viral hepatitis, only 70 people with viral hepatitis were transplanted in 2011, suggesting many

community where there are no new infections

people with end-stage liver disease are

of viral hepatitis, and where those who have

not connected to transplant services.

the virus are able to maximise their health and wellbeing. This vision is underpinned by our values, namely: Respect; Participation; Diversity; Excellence; Integrity; Innovation; Impact and Collaboration.

• In 2012, Australia performed 230 liver transplants, however our donor rates are very low. One in ten people on the transplant waiting list will die, and many others die from their viral hepatitis without

Further information about this plan, and the journey we intend to undertake to get there, can be found on our website at www.hepvic.org.au/strategicplan.

even being considered for transplantation.

• Many of these transplants and deaths are preventable with proper access to testing, treatment, and monitoring.

Another exciting dimension of 2013 is that it is the year Hepatitis Victoria will celebrate 21

With increases in the number of people with

years of service to the Victoria community.

viral hepatitis, and the ageing Australian

We intend to hold some events to mark our

population, there is likely to be more demand

history and achievements, and also to build

for liver transplants into the future. We are

even further on what we have accomplished.

already seeing this occur in the US, and

Meanwhile to more sombre matters. For the

Australia is likely to follow suit.

ﬁrst time, Good Liver is dedicating an entire

Transplantation is an important issue for the

issue to transplantation.

viral hepatitis community, and in this edition

P O T S S! PRES

After concerted advocacy by many individuals and organisations, including Hepatitis Victoria, the Federal Government announced on 19 February, 2013 that two new treatments for chronic hepatitis C would be listed on the Pharmaceutical Beneﬁts Scheme (PBS). This means the new breakthrough treatments - Boceprevir and Telaprevir - will be more affordable and available, and offers new hope for people with chronic hepatitis who have not had access to treatments suitable to their particular condition. These medicines indeed could double the cure rate and shorten the treatment duration by six months - ultimately stopping the virus from progressing into life-threatening conditions such as liver failure and liver cancer. Hepatitis Victoria is delighted with this development, and would like to thank all those who joined us in the campaign. For further information about these new treatments contact the Hepatitis InfoLine on 1800 703 003

In the news Article exerpts and published Letters to the Editor from major newspapers

Demand for liver transplantation set to increase in the US An ageing population of adults with hepatitis C is behind an increasing demand for liver transplantation in the United States, a new study reveals. The ﬁndings suggest that the development of liver cancer in baby boomers with hepatitis C is spurring the continuing increased demand for liver transplantation, but that the demand

“Over the coming decade, the ageing of those

Tasmania, Queensland, the Northern

infected with [hepatitis C virus] will challenge

Territory, the Australia Capital Territory and

the transplant community to reconsider

New South Wales all achieved their highest

current treatment plans given the projected

ever annual organ donation outcomes in

increase in liver transplantation demand,

2012. The breakdown of donors in 2012 was:

particularly from patients with [hepatitis C

New South Wales – 88; Victoria – 92;

virus] and liver cancer,” Biggins said.

Queensland – 78; South Australia – 29;

“Many of these patients may not be healthy enough for transplantation, and the number

Western Australia – 32; Tasmania – 15; Northern Territory – 8 and ACT – 12.

of liver transplants in patients with [hepatitis C virus] may decrease,” he added.

may decrease as these patients grow older, the study authors said.

Organ donation and transplantation report shows steady progress

Pioneering surgery using cow heart tissue saves woman with incurable liver cancer

Australian families are being urged to decide

A team of British doctors has managed

and discuss their donation decisions in an

to save the life of a woman in Liverpool

effort to build on the generosity of those

suffering from an incurable liver cancer

families who in 2012 agreed to their loved

thanks to a pioneering surgery through

one becoming an organ and tissue donor.

which they rebuilt her liver by using cow’s

The researchers analysed data from the

heart tissue.

Organ Procurement and Transplantation

Michelle Morgan-Grainger was diagnosed

Network between 1995 and 2010, and found

with a rare and incurable form of liver cancer

that nearly 127,000 new candidates for ﬁrst

back in October 2010. While she was initially

liver transplant registered with the network

told by doctors that the cancer could not be

during that time.

cured, she underwent a pioneering form of surgery at the Aintree University Hospitals

Forty-one percent of those patients had

NHS Foundation Trust where the doctors

hepatitis C. People born between 1941 and

removed the tumor along with a large portion

1960 accounted for 81 percent of all new liver transplant registrants infected with the virus, according to the study in the December issue of the journal Liver Transplantation.

of her Inferior Vena Cava (IVC) and went on A total of 354 Australians became organ

to reconstruct the major blood vessel by

donors in 2012, representing a 5% increase

using tissue, known as bovine pericardium,

above the 2011 outcome of 337, and a 43%

from a cow’s heart.

“The dire projections in [hepatitis C virus]

increase since 2009. The 2012 outcome of

complications spurred our investigation of

1,052 transplant recipients from deceased

age-speciﬁc trends in liver transplantation

donors represents a 4% increase (or addi–

demand,” study lead author Dr. Scott

tional 43 recipients) above the 2011 outcome

Biggins, of the University of Colorado School

of 1,009, and a 30% increase since 2009.

of Medicine, said in a journal news release.

Associate Professor Stephen McDonald

“This was a long and complex procedure and is offered only in a handful of places around the world. There are only ﬁve centres in Europe with experience in such cases. To date about 150 patients have been treated worldwide. The bovine patch has been used

The investigators also found that between

said, “Australia achieved its highest ever

in heart surgery for a while but employed in

2000 and 2010, rates of new liver transplant

number of liver transplant recipients at 230,

just six liver surgery cases, four of which

candidates with hepatitis C and liver cancer

compared to the 213 recipients in 2011. This

we’ve performed”, the consultant

quadrupled in those who were born between

represents an 8% increase over 2011 and a

hepatobiliary surgeon, Hassan Malik said.

1941 and 1960.

24% increase since 2009.

liver cancer. ‘’The need for a prison-based needle exchange is not just necessary in the Alexander Maconochie Centre [in the ACT], it is necessary in every prison,’’ he said. ,

Hepatitis Victoria calls for access to new therapies

Hep C: call for more action Needle exchange services should be provided in late-night convenience stores, petrol stations and in all Australian prisons to help stop the spread of hepatitis C, according a public health group. A report by the Economist Intelligence Unit in London warns hepatitis C has become a ‘silent pandemic’ that kills 350,000 people each year. The impact of the disease was likely to increase as many people who were infected with the blood-borne virus before it was discovered in 1989 reach the end stages of associated medical conditions. Commenting on the report, Hepatitis Australia president Stuart Loveday said Australian health authorities were doing a good job to combat the disease but more action was needed, including stepped-up preventive measures. Mr Loveday said better access to clean injecting equipment for intravenous drug users should be considered. “We would dearly love to see injecting

equipment in service stations, in late-night convenience stores because the primary needle and syringe programs are open only from nine to ﬁve and that’s limiting access and service,’’ he said. ‘’So we need expansion of outlets, we need more distribution machines - vending machines and the like. Overall, we need a proper ofﬁcial look at what the impact of the drug laws in Australia is on blood-borne

On 2 February, 2013, Hepatitis Victoria hosted a roundtable at St Vincent’s Hepatitis Clinic in Werribee Mercy Hospital on the need to urgently improve treatment options for people living with Hepatitis C in Western Melbourne. Hepatitis Victoria CEO, Melanie Eagle, said that hepatitis C is an urgent health concern needing immediate action to prevent new infections and to limit the rising burden of cirrhosis, liver cancer and avoidable deaths.

virus transmission.’’ The ACT government has proposed a needle-exchange program for Canberra’s jail but other states have not taken such action. “It is something that we believe is absolutely essential to reduce the transmission of blood-borne viruses, particularly hepatitis C. Prisons are a hotbed of hepatitis C transmission, they are a hotbed or a powerhouse of the hepatitis C epidemic,’’ he said. Hepatitis C was spread between prisoners and then into the general community when detainees were released, Mr Loveday said. It could damage the liver for decades before symptoms appeared and led to cirrhosis and

“With more than 225,000 Australians living with chronic hepatitis C, successive national hepatitis strategies have pointed out the need to improve access to new therapies which lead to increased cure rates. The new drugs, telaprevir and boceprevir, were recommended for listing under the Pharmaceutical Beneﬁts Scheme (PBS), by the Pharmaceutical Beneﬁts Advisory Committee in July 2012, and are already available in 25 countries. Editor’s note: These two treatments were approved on the 19 February 2013. Please see Communique on page 3.

Applying for a new liver - position description The who, what, where, why and how of liver transplantation

ransplantation has become an accept-

able form of treatment for many liver

What happens...

related diseases. With improvements in

Waiting

knowledge, surgical skill and immunosuppressive medication the success rate and

Referred

long term survival of transplant recipients

Transplanted

Patient and Graft surviving

Delisted

Died posttransplantation

Die on waiting list

Graft failed

has greatly improved and the patient population continues to grow.

Deferred

Assessed

The Liver Transplant Unit (LTU) at the Austin Hospital, is a unique service to Victoria and

Rejected

Tasmania. It is the only liver transplant unit in Victoria and Tasmania and receives referrals

Activated

state wide. Each year approximately 120 patients are referred for liver transplantation assessment. At least 70 of these are admitted

Still waiting

for a formal assessment to determine their suitability for placement onto the transplant waiting list. The conditions that can lead to liver transplant

radiological scans and procedures, heart

collaborated and discussed within the team

tests, endoscopic procedures) and interviews

as to whether the patient is suitable for liver

are very varied. Hepatitis B and C used to be

with members of the multidisciplinary

transplantation. Those patients who are not

unsuitable for transplantation, but now with

transplant team. The assessment usually

suitable for liver transplantation are either

the development of anti-viral medication,

takes 5-8 days as an outpatient or it can be

referred back to their specialist for continuing

transplantation is an option for people with

undertaken as an inpatient if the patient is

care or are monitored by the liver specialists .

viral hepatitis.

unwell. The purpose of the assessment is to

Patients are referred to the Austin LTU usually

assess the extent of the liver disease and to

via specialists, GPs or other Hospitals. The

identify any associated problems with other

majority of patients referred to LTU have either organs that may make the liver transplant too a conďŹ rmed diagnosis or at least a suspected risky. Associated problems may be corrected diagnosis. The diagnosis is conďŹ rmed with

if possible.

patient interview, blood tests, radiological

Patients and family get

procedures and physical assessâ&#x20AC;&#x201C;ment.

to know the LTU team,

Once the results are collaborated a plan for

which consists of

Those patients who are suitable for liver transplantation are placed onto the Liver Transplant Waiting List. They have regular contact with the liver transplant coordinator, medical staff and allied health staff, to ensure optimal health prior to liver transplantation.

Diseased liver removed

assessment, treatment and care can be made. medical staff, surgical Patients are reviewed by the liver specialist in either the outpatient clinic or as an inpatient if they are unwell. Depending on the review, the patient is either referred for liver transplant assessment or they will be treated and monitored as an outpatient (deferred). These patients may very well be referred for liver transplant assessment at a later time. However some patients are deemed unsuitable for liver transplantation due to extensive liver disease or other health problems.

staff, transplant coord-

Donor liver transplanted

Hepatic artery

staff- dietician, physiotherapist, psychiatrist, pastoral care, occupational therapist and social work. Patients and family are encouraged to ask questions

Inf. vena cava

Portal vein Common bile duct

Anastomoses

and learn about transplantation and its risks. At the end of the

The liver transplant assessment consists of

assessment process

a variety of medical tests (blood tests,

all results are

inators, allied health

A diagram of a diseased liver (A) and a transplanted liver (B) showing the vessels that are joined (anastomosed).

information has been obtained, the organ

surgery is cancelled.

patients, the constant wondering “when is a

donor coordinator contacts the liver

liver going to become available” often puts

transplant coordinator and relays the

lives and dreams on hold. Family relation-

information. The liver transplant

After as little as a few hours or a number of days in the ICU, depending on how the transplant surgery went or how sick the patient was prior to the transplant. The patient is then transferred to the ward where they usually stay for 7–10 days. Prior to discharge the patient and their family receive education on medications – why they are taking particular medication and how and when to take them, outpatient clinics, infection prophylaxis and general health care. They are given the direct phone number to the liver transplant coordinator for any questions or concerns. The patient is discharged home or to the hospital ﬂats depending on how far they live from the hospital. The patients attend post liver transplant clinic initially twice weekly. As they improve the clinic visits are extended out to monthly, bi-monthly and then every 3 – 6 months. The LTU at the Austin sees all post transplant patients at least once every six months no matter how long post transplant. Post transplant patients are with us for life and a bond is created between the patient and the unit.

Waiting for a liver transplant can be taxing on

ships are often tested, as the focus is on

coordinators discuss the potential offer with

keeping the patient in optimal health. Waiting

the liver transplant surgeon and physician.

times for a liver can be as little as a few days or as long as 3 years. During this time all patients on the liver transplant waiting list are regularly reviewed by the LTU, and the patients and their families are asked to participate in a support

The Liver Transplant Unit relies on every department in the hospital for their expertise to ensure a successful outcome for our patients.

group program. Unfortunately not all patients make it to transplantation. Some patients become too sick whilst on the waiting list and their other organs start to fail. These patients are removed from the waiting list – they are delisted and deemed too sick for transplant.

The potential recipient is chosen based on:

• •

Same blood group; Similar size- based on height, weight and girth measurement;

•

Priority within that blood group (the sickest patients get top priority).

Some patients need to go on hold – to treat

On certain occasions the liver is able to be

an infection or stabilize their liver disease.

split into 2 halves. A child and adult are then

Once treated or stabilized they are then re-

able to be transplanted, however this is

activated onto the waiting list. Some patients

dependent on the anatomy of the liver and is

however, die on the waiting list as a suitable

not suitable for all livers. Wherever possible,

organ has not been found.

if the liver is able to be split, this is undertaken.

Donation When a potential donor has been identiﬁed and the donor family has expressed the wish to donate their loved one’s organs, the organ donor coordinator is contacted by the hospital. The donor coordinator discusses at length with the family and investigates the donor’s medical and social history to ensure the suitability for organ donation. Once all

The liver recipient is then notiﬁed that a potential liver has been offered for them and they are advised to come to the hospital urgently for preparation for liver transplantation. Preparation for liver transplantation can take up to 12 hours – blood tests, chest x-ray, antibacterial body wash. During this time a retrieval team has been sent to the donor hospital to view and retrieve the liver. Once the liver has been viewed by the lead surgeon a go ahead is given to the liver transplant coordinator, and the recipient operation can commence. The liver transplant surgery takes 6 –12 hours and the patient is taken to the intensive care unit (ICU) immediately after the transplant to recover. On some occasions the liver is deemed untransplantable when viewed by the lead surgeon, the liver transplant coordinator is then notiﬁed and the recipient

Liver transplantation requires an extraordinary multidisciplinary team to manage and support the patient from the initial referral through the transplant procedure, post operatively, and beyond. The Liver Transplant Unit relies on every department in the hospital for their expertise to ensure a successful outcome for our patients.

Julie Pavlovic, Liver Transplant Coordinator, CNC Liver Transplant Unit, Austin Health References: Gow, P.J., D. Mutimer. Liver Transplantation. Indications and outcomes at the start of the 21st century. CME Gastroenterology 2001; 4: 17-20. Liver Transplant Unit, Austin Hospital, Liver Transplant Unit Website 2012, Liver Transplant Unit Protocols and Clinician Information. Manzarbeiria, C. & Smith, S .L, Liver Transplantation, viewed 13/5/10 www.medscape.com/viewarticle/451209_print>

Liver 2.0: Service and maintenance guide Staying well after a liver transplant

liver transplant is a life changing event,

and can restore health to people with

Know your medications. It is

hepatitis B or hepatitis C who are in end-stage

practice good handwashing, avoid

important that you know the

crowded spaces like public transport

medications you are on, doses and

at peak hour, and talk to your doctor

liver disease. It has usually come after a long

what they do. This can be quite

about regular vaccinations you may

time spent on a waiting list, with lots of

challenging initially because there

need. Some foods which put you at

contact with both gastroenterology specialists

may be a lot of medications and a big

higher risk of food poisoning (such as

and transplant specialists. It can be an

change from your previous regime.

sushi, shellﬁsh, food in bain-maries

overwhelming time, and may also seem like your medical care is out of your control. However, it is vital that post-transplant you

are involved and engaged in your health care

medications can interact with a lot of

to make the most of this new opportunity.

So how can you keep yourself healthy after a liver transplant?

Eat a healthy diet. A diet low in fat and salt, and high in fruits, vegetables,

post transplant help the body to

transplant – ask your doctor. After the

accept the new organ, as well as

transplant you will speak to a dietitian

assist with ﬁghting infections. You may

who can guide you on the types and

whole grains and ﬁbre is essential for whole body health. Many people with advanced liver disease require ﬂuid-

also be on speciﬁc treatment for your

amounts of food to eat, and what to

viral hepatitis. All of these medications

avoid, to maintain good health.

need to be avoided post-transplant. Speak to your doctor or dietitian to ﬁnd

out more about food safety.

Be sun smart. Many transplant medications make you more likely to tan or burn, and they also make your immune system less able to get rid of pre-cancerous cells. Both of these things means you are more susceptible to skin cancers, so slip, slop, slap, seek and slide to stay sun safe when outdoors.

A transplant is a wonderful, life-saving operation for people who develop end-stage liver disease, but it is deﬁnitely not the end of the story. Good self management and working closely with your treating team are the keys

Avoid alcohol and smoking.

to a long and healthy life with your new liver.

Smoking and alcohol can both do

People with viral hepatitis who have had a

You will also have lots of medical

damage to your new liver, and should

transplant are welcome to be part of our self

appointments in the months after your

be avoided post-transplant.

management programs at Hepatitis Victoria.

transplant, and contact with the clinic

Exercise. Ask your doctor or

If you’re interested, contact Louisa

physiotherapist about exercise post-

transplant. You should be able to

(louisa@hepvic.org.au) or the Infoline 1800 703 003 to ﬁnd out more.

make a gradual return to exercise, but

Reference

this will need to be done in

Australian National Liver Transplant Unit.

consultation with your treating team.

Information Manual for Liver Transplant

Monitor your health. Your doctor

Regular exercise can help you to

Recipients and Their Families. January 2009.

or nurse may have instructed you to

maintain a healthy weight – it is not

monitor some aspects of your health,

uncommon to put on a few kilograms

such as blood pressure, temperature

after transplant.

for the rest of your life. It is important to keep these appointments so any problems with your new liver can be picked up quickly and managed effectively.

and weight. It is important that you do this as directed by your doctors and

before taking anything new.

restrictions, but this can change after

skipped doses, to be effective.

different medications and drugs – it is important to check with your doctor

Take all medications as prescribed, keep all doctor appointments and get all recommended tests. Medications

need to be taken regularly, without

and buffets, processed meats) may

Tell your doctor about any other medications (even over-thecounter) you are taking. Transplant

Avoid infection. The transplant drugs need to alter the function of your

nurses and report back any changes

immune system so your body won’t

or problems. Similarly, if you start

reject your new liver. Unfortunately

having any unusual symptoms, issues

this means that you are more

with pain or fatigue, or you become ill,

susceptible to all sorts of infections.

you should contact the transplant clinic.

Try to avoid people who are sick,

Louisa Walsh Take Control Coordinator Hepatitis Victoria

Crunching the numbers Australian liver transplant statistics

ith over 200,000 Australians currently

Australians and New Zealanders die each

With both hepatitis B and C having poor

living with hepatitis C and 11,000 new

year from complications relating to viral

treatment uptake in our community and

infections each year, chronic hepatitis C

hepatitis, however only 70 of 250 liver

untreated disease potentially leading to

causes more liver transplants in Australia

transplants performed in the two countries

severe complications that may require liver

than any other condition.i Around one-third of

are in individuals with chronic viral hepatitisvi.

transplants, the importance of increasing

liver transplants performed in Australia are

Approximately one in ten people on the

treatment rates cannot be underestimated

due to liver damage caused by the virusii,

waiting list for a liver transplant will pass

however transplants generally only occur

away before one becomes availablevii.

when liver disease would lead to death within two years without a transplant or if other lifethreatening complications have occurrediii.

One drug company (Janssen) that manufactures treatment drugs for hepatitis C has commissioned a study which found that

Despite hepatitis C being the leading cause of widely available anti-viral treatment could prevent 2,200 deaths from virus-related liver transplantation in Australia, the chance of developing severe liver complications with

complications and around 10,000 people

hepatitis C is quite low. After 40 years of living could be prevented from having serious

Extremely low treatment rates amongst those with chronic hepatitis C (less than 2% ) increases the likelihood of individuals progressing to more serious liver disease with the virus, the chance of developing liver

liver disease developing after living with

failure or liver cancer for which the only

hepatitis Cviii.

treatment option is transplantation is only around 4%iv. However, when approximately 1 in 100 people in Australia has the virus, this can lead to quite a high demand for liver transplants. A recent US studyv found that untreated virus

Amy Kirwan Prison Project Ofﬁcer Hepatitis Victoria

Extremely low treatment rates amongst those with chronic hepatitis C (less than 2%) increases the likelihood of individuals progressing to more serious liver disease. Without signiﬁcant scale-up in treatment provision in Australia, demand for liver

in an ageing population was contributing to a

transplant will only rise, as it has done in

greater demand for liver transplant relating to

the US. This will particularly happen as

hepatitis C. More than three quarters of new

those with hepatitis C age and the disease

patients on the liver transplant register in the

progresses. If treatment is scaled up to

US between 1995 and 2010 had hepatitis C

reach a much larger proportion of those with

and were born between 1941 and 1960. This

chronic hepatitis C, particularly in light of new

ﬁgure quadrupled between 2000 and 2010,

and more effective treatment regimens, the

References i. McDonald, T. (2012) PBS decision on Hepatitis C drugs looms ABC News www.abc.net.au/news/2012-08-23/hepatitis-ctreatment-decision-looms/4218946 ii. Hepatitis Australia (2012) A guide to current and emerging hepatitis C treatments , Hepatitis Australia, Woden www.hepatitisaustralia.com/__data/assets/pdf_fi le/0010/2350/Guide-to-hepatitis-C treatments.pdf iii. The Transplantation Society of Australia and New Zealand (2012) Organ transplantation from deceased donors: Consensus statement on eligibility criteria and allocation protocols, Australian Government Organ and Tissue Authority, Canberra www.donatelife.gov.au/media/docs/TSANZ_Con sensus_Statement_V1.2.pdf iv. Hepatitis Victoria (2012) Impact: Information about hepatitis C, Hepatitis Victoria, Melbourne www.hepvic.org.au/sites/default/files/Impact%20 2012.pdf v. Batey, R. (2006) Managing hepatitis C in the community Australian Prescriber, 29 www.australianprescriber.com/magazine/29/2/3 6/9/ vi. Australasian Viral Hepatitis Conference (2012) Key facts and figures, published online

indicating a sharp increase in demand for liver need for transplants amongst this group transplant among older patients with hepatitis could potentially decline.

www.hepatitis.org.au/Key-facts-and-ﬁgures

C. This is a trend likely to be mirrored in

vii. Australasian Viral Hepatitis Conference (2012) Key facts and ﬁgures, published online

Australia and New Zealand where demand for liver transplants outweighs their availability. The Australasian Viral Hepatitis Conference draws together professionals and community members on an annual basis to discuss new developments in viral hepatitis from both research and practice. In 2012, this conference revealed that around 500

Similarly, the increasing prevalence of chronic hepatitis B in our community brings with it an elevated demand for liver transplants. If not monitored and treated, chronic hepatitis B can lead to lifethreatening complications in 30% of cases.

www.hepatitis.org.au/Key-facts-and-ﬁgures viii. McDonald, T. (2012) “PBS decision on Hepatitis C drugs looms” ABC News www.abc.net.au/news/2012-08-23/hepatitis-ctreatment-decision-looms/4218946

With adequate monitoring and treatment when needed, people with chronic hepatitis B will not need liver transplants.

Personal story Frank Carlus

Frank Carlus was surprised to find out he had hepatitis C. Moving on with his busy life he soon realised there were more surprises in store.

From

the DonateLife B Life:

y Hep C diagnosis came about quite

http://www.donatelife.gov.au/resourc

by chance, long before I started to

life/read-the-book-of-life#/page/405

suffer it’s worst effects, and was not

Reprinted with permission from the author and Do

something that I initially attached a lot of importance to. It was a chance visit to my GP during a quiet summer afternoon, a routine blood test to check the speed of my blood clotting. Then a referral to a Gastroenterologist and I was

Frank Carlus

told that I had Hep C. appear and start to undermine my general

By then I had become used to short hospital

“So, how do I get rid of it”, I asked. You don’t

health. By the late 1990’s, some 7– 8 years

stays at the Austin, to undergo tests and

get rid of it, there is no cure at the moment,

after my original diagnosis, the tell tale

minor procedures and ﬁght off infections.

she responded. Some further questioning

symptoms started to take their toll and I was

I got to know the staff and the routines and

and a passing reference was made to the

referred to the Alfred’s Liver Clinic.

developed a great respect and conﬁdence in

possibility of a liver transplant, should I ever need it in the future.

A year or so of close monitoring, a short course of interferon, all my body could take at

I was in my very early 30’s, ﬁt and living an

that point, and soon I was fully in the grip of

their work. My work was in the health ﬁeld and I knew the pressures that health services work under.

active lifestyle. So life went on, there was a

Hep C. It’s worst damage done. My liver was

Mid November, helplessly waiting, feeling my

career to pursue, overseas travel, family,

cirrhotic and there was no going back. Soon

self get weaker and sicker by the day, I got

sport. I wouldn’t say the issue was fully

enough the subject of transplantation came

the call – my turn had come up. With great

forgotten, but it was certainly pushed to

up again.

excitement and some trepidation my wife,

the back of my mind. My only ‘risk factor’ appeared to be the fact that I was born and immunised overseas, in Spain. Consequently I told my family of my

My sense of gratitude to my donor and his family continues to be overwhelming, and I doubt it will ever wear off.

diagnosis and suggested that they get tested. I sensed some skepticism, after all what

The formal referral to the Austin’s Liver

daughter and I made our way to the Austin

might have I got up to while living away and

Transplant Unit came as a bit of a shock at

and the pre-op process started, but within a

at university? Had I been using drugs?

ﬁrst. Surely there would be other solutions to

few hours, by now the middle of the night, the

Eventually they all got tested and

help me beat this. Apparently not! I was

bad news came. Some issues with the donor

unfortunately I was not alone. My mother

placed on the liver transplant waiting list.

liver meant it was not suitable for me and we

and younger sister tested positive for chronic

By mid 1999 I was down for the count. No

Hep C, and one of my older sisters carries

longer able to drive or do any thing involving

the antibodies as evidence of contact with

even minor exertion. I managed to stay at

the virus. My mother would eventually die as

work for a few more months thanks to the

were sent home, disappointed but not dejected. My conﬁdence in the process and the staff kept me in a positive state of mind – well mostly!

a direct result of liver failure. My younger

strong support of my wife, employer and work

Many weeks would pass, my health fast

sister continues in the quest to ﬁnd a cure

colleagues. My wife would have rather I’d

deteriorating, my mood and conﬁdence

to this insidious bug.

stayed home, but I wasn’t prepared to give

dropping. I suffered terrible leg cramps, poor

Initially life went on for me, but more

up, not just yet.

digestion, esophageal varices, internal

concerning symptoms would inevitably

bleeding, constipation and terrible

Book of

ces/book-of-

onateLife

encephalopathy. I was on my last legs. January 2000 was terrible, I hadn’t lost hope or patience, but I was just hanging in there by the barest of threads. Another false alarm was shortly followed by the real thing early in February. I was euphoric on my way to theatre – I thought that one way or the other my suffering was coming to an end. The transplant procedure was long but successful. The 36 long hours in Intensive Care, not knowing where I was and what was happening to me, were terrible. It was not what I had expected. Beam me up Scotty! Soon enough I was moved out to the ward, in total isolation initially to prevent infections, and I started to get my bearings, although I was still connected to a central line and several beeping machines. Better times were around the corner. Soon I had a ravenous appetite and I was up and about, ready to take on the world and make up on lost ground, or so I thought! The transplant had not removed Hep C from

We beat the bugger – well, not really, but we

supported and encouraged me throughout

won the ﬁrst decisive battle, but not before my

the ordeal. But don’t get me wrong, I am not

new liver had been severely damaged, a ten

up for sainthood just yet.

day long bout of prednisolone psychosis and a few other minor complications. By week six post transplant I was on my way home with my new liver and a new sense of hope – a rare second chance in life. My sense of gratitude to my donor and his family continues to be overwhelming, and I doubt it will ever wear off. Importantly my wife, family and many friends share in that sense. The journey would never have been possible without their ﬁrm support

Post transplant cycling has become my physical activity of choice. I am no Lance Armstrong and I can freely admit to being on drugs, immune suppressants mostly. I have competed in two Australian Transplant games, completed 6 Round The Bay in a Day rides, and later this year I hope to complete my tenth Murray to Moyne cycle relay from Echuca to Port Fairy through which my work

and a healthy active life, just like I had hoped.

based team, sponsored by the Better Health

I could say I am a model post transplant

Channel, has raised over $100,000 for a

patient, although unfortunately there is

number of health related organizations.

probably no such thing. Everyone is different; we all face different issues at different times. Sadly many still die waiting for a transplant, others recover but are not necessarily able to resume their earlier activities and remain challenged by their health and scarred by the pre transplant experience of ill health and

perfect playground. The virus was having a

near misses. Some of my contemporaries

ball and playing merry hell with my new liver,

have sadly passed on.

other specialists at the Austin and beyond.

all that life has to offer.

smooth sailing. I was able to resume work

my body immediately post transplant was its

ledge and resolve of the liver transplant and

be confronted, some risks need to be taken. One does not need to be reckless to enjoy

The last 13 years have been relatively

my body and the immune suppressed state of

it tested not just my reserves but the know–

Life is meant to be lived, challenges need to

Post transplant I’ve continued to pursue a lifestyle that would honor my donor, the transplant team, and all of those who have

It would be wrong to present my Hep C and transplant journey as straight forward or easy. It has had many ups and downs, but I look forward to every new day with a sense of optimism. I have been given a great gift which I respect not by attempting supernatural feats but by doing simple every day things as well as I can and contributing to my community and the lives of others.

Frank Carlus 16 January 2013

Personal story Shane Laffy

At Hepatitis Victoria’s Annual General Meeting in 2009, musician, Shane Laffy spoke of his discovery that he had hepatitis C and his subsequent liver transplant. Shane’s liver transplant story is told here for Good liver readers.

had my liver transplant on 31 July 2004. I was discharged home in 13 days. I had

my birthday and wrote 30 songs. I wrote a song and a poem for the family of the donor. It was passed on to them. I do think about the donor from time to time. He was a young guy who died in a car accident. I don’t dwell on it though, or have any guilt. I’m just lucky to get another chance. I’ve always been a

from a certain era, and a lot of that crowd have hep C. I know lots of people who have died from liver failure or liver cancer and usually it’s a result of hep C. Outside that community of course, there’s a lot of stigma about drug use and hepatitis. I’m not shy about talking about it, and I’m not shy about showing my scars.

wonderful time, but the truth is, it’s the people I have around me that make it so special. I’m about to celebrate my 12th anniversary with my partner. If I didn’t have that strong relationship with her, I may well be gone by now. Paulie Stewart (The Liver Brother), my old friend from the band Painters and Dockers, is also part of The Transplants. Paulie is now into his 5th year of transplantation.

When you have your liver transplant and then get discharged home, there’s a euphoria that happens. Mine hasn’t gone away yet. I still think it’s just amazing.

happy-go-lucky type.

...with

Hinch. Derryn

Life after death, Shane’s story now It’s eight years 6 months after my transplant. Amazing, I’m still here enjoying life. Playing rock & roll, writing, performing, meeting new friends and generally having a very nice time of it. It’s ﬁne to say that I am having a

When you have your liver transplant and then

You couldn’t work with a better person. Always up and at em’, eccentric to the 9’s, and just an amazing artist, and the best PR guy you could want. Last year we put on a show for Donate Life Week at the Caravan Club in Oakleigh. We had some refugee boys from Africa, “The Flybeez” Hip Hoppin’ their way through the afternoon. Paulie works with these guys through The Brosnan Centre Brunswick, and they are just fantastic people. Paulie got the Human headline, Derryn Hinch to give a talk and he also did his Joe Cocker

ser g Fra Dag o e J v e St tewart Pa u l S

get discharged home, there’s a euphoria that happens. Mine hasn’t gone away yet. I still think it’s just amazing. Before the transplant, I’d thought I was gone, and I’ve had seven plus years of good heath now. I have a great life. I’ve worked for community television for ten years, I write songs, perform, I’ve got into ﬁlm editing. I’ve started learning new things and doing things since I got my health back. It’s been a long road but I got there in the end. I haven’t really felt the stigma of having hep C. Most of my friends are artists or musicians

ane Sh

fy Laf

impersonation You are so beautiful. (Apparently it’s one of his old party tricks). He then did a Painters and Dockers song with us Your going home in the back of a divi van and it was hilarious. I interviewed Derryn for ASYLUM TV and he was great. His presence also got all free to air channels to show up, which gave us national coverage on the news that evening. We had over 400 attend the show, which is still a record for the venue. Thank you Paulie, you’re a legend mate. We lost our little mate Shaun Miller just

(guitar and bass). Also Derryn Hinch is

Shane Laffy

coming along with Judith Durham (the

Musician

seekers) who will be reading some poetry that she has written about organ donation, it should be a great day. So, it’s ﬁne to be alive, but without all these people, it would be a very lonely existence. I’m a very, very lucky boy.

Shane Laffy, 56, is a 35 year veteran of the music industry, performing with bands such as 20 Flight Rock, Man Friday, and most recently with the Transplants and his original band ‘RUMBLE’. He spent the past decade working in community television in Victoria.

nts anspla The Tr

after the show. He was 17 and had 2 heart transplants. His book has been published and it looks like a movie is in the wind. Shaun was to give a talk on the day for Heart Kids, but was unable to attend. We miss you mate. ‘The Transplants’ are doing Donate Life Week again this year, and will be performing in Lygon Street, Carlton on the 3 March. We have a couple of new members who performed with us last year. Jo’ Fraser on vocals and Steve Dagg on Sax, They are both double liver transplant patients and are just great performers, as well as John Grant (keys) Bob Cary (drums) Colin and Michael Badger

Organ donation Can people with hepatitis be organ donors?

n recent years the number of organ donors

To learn more about organ donation visit

and transplant recipients has increased

www.donatelife.gov.au and discover the facts,

steadily, however, there is still more than

decide if you wish to be a donor, and discuss

1,500 Australians waiting for an organ transplant.

Many Australians do not know that less than two percent of people will die in

the issue with your family and friends. Article supplied by DonateLife

Although 80 percent of Australians support

hospital in the speciﬁc circumstances

donation, many Australians have still not

where organ donation is even possible.

Ed’s note: We often talk about organ

Every donation counts and it is

donation in Hep C: Take Control, and

important for everyone to discuss their

sometimes I get asked if signing up to the

discussed their wishes with their families, or are unsure if they would be able to donate.

wishes regarding organ donation with

organ donor register means you have to

donate if you have been diagnosed with

their loved ones, as they will be asked

disclose your health status to your family.

transmissible diseases, like chronic hepatitis

to give the ﬁnal OK.

A common myth is that you are not eligible to

B or C.

This is a myth. People can be an organ donor and have acute or even chronic viral hepatitis (hepatitis B or hepatitis C).

DonateLife Victoria’s State Operations Manager, Kelly Rogerson.

be made by the medical team as to whether the organs and tissue are suitable for

every potential organ donor is critical.

being transplanted into a recipient.

People with hepatitis are able to donate

Often an organ from a donor with hepatitis will save the life of a

they will have lots of tests done to determine will be retrieved and read. A decision will then

that organ donation is possible, so

to ﬁnd a suitably matched recipient.

process quicker, however, if someone is identiﬁed as a potential organ or tissue donor, their health status, and their medical records

Very few people die in such a way

their organs and every effort is made

Your family knowing your medical history may make parts of the donation assessment

Part of this testing involves looking

VOILA! OILA!

for blood borne viruses, which means that your family does not have to be able to inform the doctors of your full medical

potential recipient with hepatitis or a

history for a decision to be

person with only days or hours to

made.

live without a transplant. Organs from donors with chronic hepatitis B can also be donated to recipients who have already been immunised against hepatitis B. DonateLife Victoria’s Organ Donor Coordinator, Hayley Furniss.

Illustration by Swivel Design

One donor can transform the lives of up to 10 people and significantly improve the lives of many more.

Last year 92 Victorians gave life-changing transplants to 267 Australians.

Young Blood

Photo Mick Tsikas. SMH.

For young people with hepatitis.

Personal story... Imagine

FIND-A-WORD by Lauren Proudfoot I EH T Y KD Y A KK O D T Y F C XE N O SF M T EG X E SOD Z RY S W UR A M NCO M DE S A SH O R EU S S BJ K K I O B O YE W B EK K E FO F Y SP K X

I P I A T Z Y A X S M E T I I L J E L I

F N Y L R O R O T T U C A T I V S Z R H

O Y T F A E R N B N N E G V G S H X H T

A C X E N R E S Z E I D E N U Z E T W T

H F Y E S I T I A M T R S C F R A F T M

Y C S C P T I S V E Y E S E E Y R V J G

C S N I L F I S U G R I L G V N T K Z B

F O C L A O T N F A D C I P A I L K N M

M E R M N T S A E G F S N G O A L I L O

R K I N T A Q P R N T W R A C E K D F L

S L F L E P N J O E Y O O I P S P N P O

Y Y X N K A R P R R C O N S E N T E R F

T R A N S P L A N T I I O L U N G Y L U

S E L N A A T B I S P I S R O B H Y K C L N N H D E L K R X O P WM CW H O M I

AUSTRALIA

DONOR

PEOPLE

AWARENESS

ENGAGEMENT

RECIPIENTS

BOWEL

FAMILY

BRISBANE

HEART

SHORTAGE

CLINICAL

HOSPITALS

SKIN

COMMUNITY

INTESTINE

TECHNIQUE

CONSENT

KIDNEY

TISSUE

CORNEA

LIVER

TRANSPLANT

CYCLOSPORINE

LIVES

WORLD

DECEASED

LUNG

DECIDE

NURSES

DISCUSS

ORGAN

DOCTORS

PANCREAS

D E C I D E L E S T E C H N I Q U E P P

magine you’re 13 and someone said your mum was dying. Without a liver transplant she wouldn’t survive till Christmas. Imagine knowing that to save your mum, someone would have to give the ultimate gift of life. This was my family’s reality some years ago.

As Mum’s condition grew worse, she clung to the life she had left, but slowly it was slipping away. Then at midnight we received a call that changed our family forever as a donor liver had been found. Mum went straight into surgery and it went well. While there were still many post-transplant challenges, Mum met them all and returned to near perfect health. This moment forever changed my life. Between the dedication of Mum’s medical team and the courageous and selﬂess gift of life from the donor family, I wanted to give something back. In 2005 at age 15, I saw the Tour de France and an idea hit me—a ride to raise awareness and get people talking about organ and tissue donation. Two years later I completed the inaugural Awareness Ride during Australian Organ Donor Awareness Week, cycling over 1,800km and raising much needed awareness. Then in 2009 another cycle ride took me from Cairns to Brisbane, helping to further spread the word about organ donation. Recently Mum needed another transplant, and again thanks to a kind selﬂess donor, one was found. They say each donor can help the lives of up to ten people and I knew that if I could change one person’s perspective on organ donation, then indirectly, I might improve the lives of ten. I encourage everyone to think about organ donation and talk about it with your family. Imagine if your discussion or decision resulted in saving one life, or even ten. To you, I’d be forever grateful.*

XENOTRANSPLANT

Josh * From the DonateLife, Book of Life: www.donatelife.gov.au/resources/book-oflife/read-the-book-of-life#/page/405 Reprinted with permission from the author and DonateLife

Moving in Amy Kirwan

Aboriginal Program

i, I’m Amy Kirwan, the new Prisons Project Ofﬁcer at Hepatitis Victoria.

My focus will be on exploring how particularly marginalised prisoners (young people in the

fter a very productive 2012, I am

This was a great opportunity for Hepatitis

excited and looking forward to the

Victoria to network with other organisations,

New Year. Of note from last year were two important projects that I worked on:

government departments and ACCHO’s from rural, urban and regional Victoria. It was also an excellent chance to develop

adult prison system, women and prisoners

Firstly, I attended the Mob in the Margins

from non-English speaking backgrounds) can be better served by the organisation

Forum – Ararat, Warrnambool, Swan Hill and Cobram.

and their opportunities to become educated

This Forum was to open high level

about viral hepatitis can be improved.

discussions with CEO’s and Aboriginal

I have spent the past nine years working in

Community Controlled Health Organisation

public health in Victoria. My early beginnings

(ACCHO) board members on Viral Hepatitis

were in community health over on the

prevention in Victorian Aboriginal

networks and partnerships with other Aboriginal organisations and communities. 2013 began with the Hepatitis Victoria Aboriginal Program participating in theYoung

Aboriginal and Torres Strait Islander National Sexual Health Survey on Survival Day, 26 January.

Richmond public housing estate working to

communities. As Hepatitis C rates are 6 times

This iniative involved developing and

assist health service providers to respond

higher in Aboriginal Communities, over 80%

conducting the ﬁrst Australia-wide study

to the needs of culturally and linguistically

of new hepatitis C (HCV) infections are from

describing levels of knowledge, risk practices

diverse communities. For the last ﬁve years I

injecting drug use. Needle Syringe Program

and access to health services in relation to

have worked in the harm reduction ﬁeld with

(NSP) services are proven to reduce HCV

sexually transmitted infections (STI’s) and

a range of roles across policy advocacy,

and HIV transmission and increase support to

blood borne viral infections (BBV’s) among

research and frontline service delivery. It is

a vulnerable group in the Aboriginal

young Aboriginal and Torres Strait Islander

population. The Yiaga ba Wadamba Report

(TSI) people aged 16 to 29 years.

in this ﬁeld that I feel I have found my niche, particularly through my work with prisoners

recommendations show that Aboriginal

Another exciting project is our multi–

and injecting drug users, two of Hepatitis

people who inject drugs want NSP services

organisational partnership with the Aboriginal

Victoria’s key population target groups. I am

from ACCHO and culturally competent

Community Development Workers from the

also a qualiﬁed social worker.

mainstream services. I accompanied

Melbourne Sexual Health Centre; Konnect -

VACCHO staff and we were fortunate to

Jesuit Social Services; Cancer Council

spend a day at the people at Lake Condah

Victoria; Victorian Aboriginal Health Service

Each person has a story. While these stories may have common themes, such as disadvantage and poor physical and mental health, each person has had their own

Mission who were holding their annual

(VAHS); to deliver educational sessions to

Strengthening Community Day.

the Aboriginal prison population.

journey. Sometimes the most important

Secondly, VACCHO Chronic Disease and

thing anyone can do is listen and just treat

Health Lifestyle Forum was held late November and Hepatitis Victoria’s Aboriginal Program had a stall. This State-wide event was aimed at health care professionals working in the Aboriginal Health Sector and focused on chronic conditions, such as: • smoking cessation and control; • nutrition and physical activity; • sexual health and blood borne viruses; • general health promotion.

them as another human being, as this is often missing from people’s experiences. I hope to work with a range of stakeholders to ensure that these individuals are given the opportunity to make informed choices about their health.

Amy Kirwan Prisons Project Ofﬁcer

I am looking forward to working with and developing further strong partnerships with other Aboriginal Organisations and the community around the state as well as working with the Aboriginal Liaison Prison Ofﬁcers.

Felicity Omar Health Educator Aboriginal Program

Hep Connect A case study

ast issue we told you about our new

service Hep Connect, which provides an

opportunity for people with hepatitis C to mutually discuss their experience with a trained peer volunteer over the telephone. All peer volunteers have experience of living with hepatitis C and have undertaken hepatitis C treatment or are living with cirrhosis. Hep Connect is a free and conﬁdential service. Read below to ﬁnd out how it’s going from an

David – Hep Connect Volunteer

the interferon/ribavirin medication. I have to

Infoline caller and the corresponding Hep

Recently I received my ﬁrst request

say that a lot of my thoughts and feelings

Connect volunteer.

through the Hep Connect program to speak during the treatment were quite negative. to somebody about my experience of going Largely owing to this often negative

Background Sophia’s partner was about to start treatment for hepatitis C and Sophia wanted to learn more about what that would be like for him.

on hepatitis C treatment.

experience, I cautioned against rushing

onto treatment unless it really is an urgent We were able to cover a lot of topics during matter. Perhaps the fact that I didn’t clear our chat. These topics included preparation the virus has tended to make me view my

She wanted to understand what he might go

for treatment (or, in some cases, my lack of story in a poor light.

through so she was able to provide him with

preparation) and understanding how and

the support he needed. Hepatitis Victoria

when to administer the drugs and be

Infoline staff connected Sophia to a male

educated about their possible side effects.

volunteer who has been through treatment.

We also discussed in detail having support from family, friends and the relevant medical professionals. Clearly these support networks weren’t great for me at the time, but I would say that was largely owing to my own stubbornness.

As for Hep Connect, I think these contacts can be very beneﬁcial, for both the caller and the called. It’s not always easy for an individual to seek a counselling or support service face to face and this could be due to different factors. They may be shy, they may live in a remote area or it could be something else I haven’t thought of. Overall, I enjoyed sharing my experience in

I tried to relate as best I possibly could

the hope that it can assist somebody else

about my thoughts and emotions while on

in their journey.

Sophia – Infoline caller Sometimes, your partner doesn’t tell you everything. Maybe he just doesn’t know and doesn’t want to ask the question. I spoke with David and he covered everything I needed to know. “He made me see reality” It was very good to hear what going through 12 months of treatment was like for David, as I want to be there for my partner and now I know it’s going to be difﬁcult, I can prepare for it. I can work out how I will cope. I would deﬁnitely recommend Hep Connect to other people and might use it again in the future.

Call for Hep Connect volunteers: Are you the partner of someone who has been through treatment? Are you interested in supporting other people like yourself? For more information contact Garry Sattell on the

Hepatitis Infoline 1800 703 003

It would be great to talk to other partners of people who have been through treatment.

HepC:Going Viral Do you have, or have you ever had, hepatitis C? Would you like to connect with other people with hepatitis C? Face-to-face not your style? In the ﬁrst half of 2013 Hepatitis Victoria is running the popular and successful Hep C: Take Control as an Internet-based program.

The commitment will be around one and a half – two hours (one hour group chat, 30 mins to one hour module activities) per week for six weeks. The modules will be tailored to your health needs and interests. Multiple groups will be running (including outside work hours),

We are currently looking for people with hepatitis

so we should be able to ﬁnd a day and time to suit

C, or who have had hepatitis C in the past,

your needs.

to help us trial our Internet-based group.

Previous participants in Hep C: Take Control are also

Hep C: Going Viral will be a six week online group program with a focus on health education around hepatitis C, and learning the skills for setting goals around health and well-being.

welcome, and this will be great way to refresh some of

The online group will be made up of between 5 and 10 people, and will consist of a weekly one hour online (typed) chat session with the whole group, plus some modules you can work on in your own time, for your own learning.

those self management skills, and get your health back on track if you’ve had a few slips recently.

If you are interested in being part of Hep C: Going Viral, or would like more information, please contact Louisa Walsh at Hepatitis Victoria on 1800 703 003 or louisa@hepvic.org.au

We need YOUR help! Making a donation to Hepatitis Victoria helps us to help others.

I would like to make a donation of $

q Please ﬁnd my cheque/money order enclosed. Please debit my: q Visa q Mastercard

q American Express

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Club Expiry date: Name on card:

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Title:

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)

Hepatitis Victoria membership Make a difference. Become a member of Hepatitis Victoria.

Having remained unchanged for several years, the Hepatitis Victoria membership fee is set to rise on 1 July, 2013

PROMOTIONAL OFFER! JOIN BEFORE THE PRICE RISE IN JULY,

We are committed to growing our organisational capacities and will be able to provide our members with the best possible tools, services and resources.

(currently $77 for organisations)

WITH NO RENEWAL UNTIL JULY 2014!

2013 will see the addition of new resources, new programs, new services, and a dedicated approach to providing a ﬂow-on of valuable beneﬁts to our members. As an organisation we are constantly striving to raise awareness and support for those affected by viral hepatitis. Unfortunately much of the community see hepatitis as a 'dirty word' rather than a chronic disease that 400 million people worldwide are living with at this very moment (over 400,000 Australians – 2% of our population!) By becoming a member you are also providing a voice for people living with viral hepatitis.

Fees from 1 July, 2013 • Organisations

$150

• Individuals

$40

• Concession (student, pensioner, unemployed)

$15

• People living with viral hepatitis

$0 (or by donation)

To join please email Lisa Nulty: admin@hepvic.org.au

Liver clinics

Liver clinics and liver specialists To access public hepatitis C treatment services a referral from a GP is needed. In most cases a referral is faxed to the hepatitis treatment service. The hepatitis treatment services will generally not discuss your treatment options with you until after they have received a referral from your GP.

CLAYTON

MILDURA

Southern Health Monash Medical Centre 246 Clayton Road, Clayton Contact: 9594 6035 Fax: 9594 6925

Mildara 234 Thirteenth Street, Mildura Contact: 0408 581 781

CRANBOURNE

Royal Melbourne Hospital Corner Royal Parade and Grattan Streets, Parkville Contact: 9342 7212 Fax: 9342 7277

Southern Health Monash Medical Centre Contact: 95943177 Fax: 9594 6245

EPPING

This list of hepatitis treatment services includes clinics that are known to Hepatitis Victoria. Not all possible services are listed and there may be others in your local area.

Northern Hospital 185 Cooper Street, Contact: 8405 8000 Fax: 8405 8761

ALBURY

FITZROY

Albury Community Health – Hepatitis Clinic Suite 3, Albury Wodonga Specialist Centre 2 Ramsey Place, West Albury. Contact: (02) 6058 1800 Fax: (02) 6058 1801

BAIRNSDALE Bairnsdale Regional Hospital Bairnsdale Regional Health Service Specialist Consulting Rooms. Princes Hwy, Bairnsdale. Contact: 5150 3478 Fax: 5150 3404

BALLARAT Ballarat Base Hospital Drummond Street, Ballarat Contact: 5320 4211 Fax: 5320 4472

BALLARAT Ballarat Community Health 210 Stuart Street, Ballarat Contact: 5338 4500 or 5320 7500 Fax:5339 3044

BENDIGO Bendigo Health Cnr Arnold and Lucas Streets, Bendigo Contact: 5454 8422 Fax: 5454 8419

BOX HILL Box Hill Hospital 16 Arnold Street, Box Hill Contact: 9895 3333 (ask for OPD) Fax: 9895 4852

St Vincents Hospital 35 Victoria Parade, Fitzroy Contact; 9288 3771 Fax: 9288 3489

FOOTSCRAY Western Hospital Eleanor Street, Footscray Contact: 8345 6291

GEELONG Geelong Hospital Ryrie Steet, Geelong Contact: 5246 5117 Fax: 5221 3429

GIPPSLAND Central Gippsland Health Service Guthridge Parade, Sale. Contact: 5143 8600 Email: enquires@cghs.com.au

HEIDELBERG Austin Hospital 145 Studley Road, Hiedelberg Contact: 9496 2787 Fax: 9496 7232

MAROONDAH

PARKVILLE

PRAHRAN Alfred Hospital Gastroenterology Department 55 Commercial Road, Prahran Contact: 9076 2223 Fax: 9276 2194 Alfred Hospital Infectious Diseases Unit 55 Commercial Road, Prahran Contact; 9076 6081 Fax: 9076 6578

SHEPPARTON Goulburn Valley Health 50 Graham Street, Shepparton Telephone: 03) 5832 3600

SPRINGVALE Springvale Community Health 55 Buckingham Street, Springvale Contact: 9594 3088

TRARALGON Latrobe Regional Hospital Private Consulting Suites 3 and 4 Princes Highway, Traralgon West. Contact: 5173 8111

WARRNAMBOOL Western Region Alcohol and Drug Centre (limited hepatitis treatment services) 172 Merri Street, Warrnambool Contact: 1300 009 723

Maroondah Hospital (Eastern Health) Out-Patients, Ground Floor, Davey Drive, Ringwood East Contact: 9895 3333 Fax: 9871 3202

Murray Valley (Private) Hospital (Dr Tim Shanahan – Gastroenterologist) Nordsvan Drive, Wodonga. Vic. Contact: (02) 6056 3366

MOORABBIN

WODONGA

Bayside Liver Clinic (Alfred Hospital) 999 Nepean Highway, Moorabbin Contact: 9276 2223 Fax: 9276 2194

WODONGA

Wodonga Regional Hospital Vermont Street. Wodonga Contact: (02) 6051 7413

Contacts

Community-based hepatitis C treatment services Community based treatment clinics have been developed to enable more people to access treatment in their local communities.

Living Room 7 – 9 Hosier Lane, Melbourne Contact: 9945 2100

Dr Ohnmar John

84 – 85 Forster Street Dandenong Contact: 9794 7895

Weekly visiting Hep C Nurse

Health Works

75 Brunswick St, Fitzroy

Primary healthcare and needle syringe program Hepatitis C information, support and treatment 4-12 Buckley Street Footscray Contact: (03) 9362 8100 www.wrhc.com.au/Services_HEALTH.html

North Yarra Community Health

Contact: 9411 3555 or 9288 2259

Dr John Sherman GP who does hepatitis C treatment Also opiate replacement therapy 131b Hopkins Street (rear)

Health Works

(entry via Chambers Street), Footscray

4 –12 Buckley Street, Footscray

Contact: 96891602

Contact: 9362 8100

Barkley Street Medical Centre Dr Elizabeth Leder Monthly visiting Gastroenterologist and hep C Nurse

Primary health care centres (for people who use drugs) Primary Needle Syringe Programs

60 Buckley Street, St. Kilda

Living Room

Contact: (03) 9534 0531 or (03) 9288 2259

Primary healthcare and needle syringe program Hepatitis C information, support and treatment services 7–9 Hosier Lane (off Flinders Lane), Melbourne Contact: 9662 4488 www.youthprojects.org.au

Greater Dandenong Community Health Service Hepatitis C outreach treatment clinic 229 Thomas Street, Dandenong Contact: 9594 3089

Cranbourne Integrated Care Centre Hepatitis C outreach treatment clinic

Access Health

as part of Southern Health Services

Primary healthcare and needle syringe program for marginalised/street based injecting drug users, street sex workers and people experiencing homelessness. Hepatitis C information, support and treatment 31 Grey Street, St. Kilda Contact: 9536 7780

140–154 Sladen Street, Cranbourne Contact: 9594 3089

North Richmond Community Health Dr John Furler Weekly visiting Hep C Nurse 23 Lennox Street, Richmond

Inner Space

Contact: (03) 9418 9800 or (03) 9288 2259

Primary healthcare and needle syringe program Hepatitis C information, support and treatment. 4 Johnson Street, Collingwood Contact: 9468 2800 www.nych.org.au/services/drug.html

St. Kyrollos Family Clinic Dr Ashraf Saddik Monthly visiting Hep C Nurse 2A Moore Street, Coburg Contact: 9386 0900 or 9288 2259

Werribee Mercy Hospital Consulting Suites 300 Princess Hwy, Werribee Contact: 9386 2259 Fax: 9288 3596

South East Alcohol and Drug Service (Forster Street) Primary healthcare and needle syringe program

Services-Metro/statewide COMPLEMENTARY MEDICINES National Herbalist Association of Australia Peak body of accredited herbalist and naturopaths Contact: (02) 8765 0071 www.nhaa.org.au Professor Jerry Zhang (Jiansheng) Chinese Medical Service, specialising in Chinese Immunology, internal medicine and dermatology Suite 9, 2nd ﬂoor, 517 St. Kilda Road, Melbourne Contact: 9820 4462 Jenny Adams Naturopath Wellness Medicine Centre. Integrating western medicine with complementary and alternative medicine 41 Queens Parade, Clifton Hill Contact: 9489 7955 www.wellnessmedicine.com.au Gill Stannard Herbalist and Naturopath City Natural Therapies 510/220 Collins Street, Melbourne Contact: (03) 9650 3419 gillstannard.com.au Kundalini House Wide range of complementary therapies 1/391 St Georges Road, Fitzroy North Contact: 9482 4325 www.kundalinihouse.com.au

COUNSELLING SERVICES Caraniche Free Counselling Community Alcohol and Other Drug Services Craigieburn Ofﬁce – 8339 6800 Whittlesea Ofﬁce – 0429 855 673 Positive Health (Hep C) Counseling Victorian AIDS Council 6 Clarendon Street, South Yarra. Telephone: 9865 6700 1800 134 840 (freecall for country callers) Direct Line (Drug and alcohol counselling and NSP info) Free call: 1800 888 236 Margie Fry Psychologist, Nexus Psychology Balwyn Road Medical 353 Balwyn Road, Balwyn North Telephone: 9500 0751 www.nexuspsychology.com.au/

MEDICAL SERVICES Royal District Nursing Service Telephone: 9536 5222 Email: getinfo@rdns.com.au

Indigenous Health Ngwala Willumbong Co-op Limited 93 Wellington Street, St Kilda Indigenous drug and alcohol service Telephone: 9510 3233 Email: info@ngwala.org VACCHO (Victorian Aboriginal Community Controlled Health Organisation) 17 – 23 Sackville Street, Collingwood. Telephone: 9411 9411 Email: enquiries@vaccho.com.au Web: www.vaccho.org.au Victorian Aboriginal Health Service 186 Nicholson Street, Fitzroy Telephone: 9419 3000 Fax:9417 3897

Sexual Health Melbourne Sexual Health Centre 580 Swanston Street, City Telephone: 9347 0244 Free call: 1800 032 017

Multicultural Health and Support Service, Carlton 81 – 85 Barry Street, Carlton. HIV, hepatitis C and sexually transmissible infections Telephone: 9342 9720 Go to: www.ceh.org.au/mhss.aspx

MISCELLANEOUS SERVICES ANEX (Association of Needle Exchanges) Suite 1 Level 2, 600 Nicholson Street, North Fitzroy Telephone: 9486 6399 Email: info@anex.org.au HIV/Hepatitis/STI Education and Resource Centre at the Alfred Moubray Street, Prahran Statewide resource centre on HIV/AIDS, Hepatitis and Sexually Transmissible Infections Telephone: 9276 6993 Email: erc@alfred.org.au Web: www.hivhepsti.info Turning Point Alcohol and Drug Centre, Fitzroy 54- 62 Gertrude Street Telephone: 8413 8413 Email: info@turningpoint.org.au Web: www.turningpoint.org.au Victorian Equal Opportunity and Human Rights Commission Level 3, 380 Lonsdale Street, City Information on state and federal equal opportunity laws and programs Telephone 9281 7111 Freecall: 1800 134 142 Email: information@veohrc.vic.gov.au Web: www.humanrightscommission .vic.gov.au Haemophilia Foundation Victoria, 13 Keith Street, Hampton East Bleeding disorders and hepatitis C. Telephone:9555 7595 Hepatitis Australia Web forum for professionals in the hepatitis C sector.www.hepatitisaustralia.com/ forum/publicaccess/

Ofﬁce of the Health Services Commissioner 30th Floor, 570 Bourke Street, City Telephone: 8601 5222 Complaints: 8601 5200 Freecall: 1800 136 066 Victorian Viral Hepatitis Educator Training for Doctors, Nurses and other health professionals Telephone 9288 3586 Mobile 0407 865 140 Harm Reduction Victoria (HRV) 128 Peel Street, North Melbourne Telephone: 9329 1500 Email: admin@hrvic.org.au Website: www.hrvic.org.au

Multilingual Hepatitis C Resources This website has over 400 pages of hepatitis C and HIV information in 18 languages. www.multiculturalhivhepc.net.au

Services - Regional These contacts are able to provide information about local viral hepatitis related services as well as active support groups. Ballarat Community Health Contact: Marg Stangl Telephone: (03) 5338 4500 Barwon - Surf Coast Health Service Telephone: 03) 5261 1100 Barwon Health Drug and Alcohol Services Telephone: (03) 5273 4000 Bendigo Health Care Group Contact: Catina Eyres Telephone: 5454 8414 Camperdown Hepatitis C Support worker Contact: Jo Sloetjes Telephone: 5593 3415 Email: camperdown.resource@svdp-vic.org.au CAN (Country Awareness Network), Bendigo Information, education, support, referrals and advocacy to Victorian rural/regional communities regarding HIV/AIDS, Hepatitis C, other Blood Borne Viruses and Sexually Transmitted Infections Telephone: 5443 8355 Email: can@can.org.au Web: www.can.org.au

Jigsaw Youth Health Service Contact: Rochelle Hamilton Telephone: 5279 2754

Hepatitis C support on the Internet Australia Hepatitis C Support (AHCS)

Latrobe - Mobile Drug Safety Worker Helen Warner Mobile: 0438 128 919 Mildura - Sunraysia Community Health Contact: Anne Watts Telephone: 5023 7511 Moe Community Health Centre Telephone: 5127 5555 Portland - Glenelg Southern Grampians Drug Treatment Service Contact: Bev McIlroy Telephone: 5521 0350 Shepparton Community Health Telephone: 5823 3200 Wangaratta - Ovens and King Community Health Centre Contact: Diane Hourigan Telephone: 5723 2000 Warrnambool - Western Region Alcohol and Drug Centre (WRAD)

Dr Brough is offering limited specialist services from the WRAD centre on the 2nd Thursday of each month. Telephone: 1300 009 723 Wimmera (East) Region (Birchip, Wycheproof, St Arnaud) Phil Blackwood (Naturopath/Psychologist) Mobile telephone: 0403 625 526 Wodonga Community Health Contact: Jenny Horan/Anita Telephone: (02) 6022 8888 Yarra Valley Community Health Service Contact: Debra Cahill Telephone: 1300 130 381 Yarrawonga Community Health Contact: Cherie McQualter Whyte Telephone: 5744 1324

A community-based information resource, providing support and assistance to people from Australia and around the world. www.hepcaustralia.com.au Hep C Australasia Forum A community based internet discussion forum which aims to empower people affected by hepatitis C by providing a place to share ideas, opinions and support www.hepcaustralasia.org/

'Our C-ciety' Hepatitis C Support Website This is a hepatitis C support web site with an injecting drug use focus. It is for those who are interested in hepatitis C, injecting drug use and pharmacotherapy, regardless of hepatitis C status or history of injecting drug use. ‘Our C-ciety’ still has a separate peer support closed section for people who are living with hepatitis C and have a history of injecting drug use and/or are on a pharmacotherapy program. http://c-ciety.ning.com/

HEPATITISVICTORIA

SUPPORT GROUP Meets monthly on a Sunday between 2.00pm – 4.00pm The Hepatitis Support Group meets at the ofﬁce of Hepatitis Victoria,

Suite 5, 200 Sydney Road, Brunswick. The meetings are a great place to meet other people who are also living with hepatitis. The group is friendly and welcoming and comprises people from various backgrounds who come together once a month to talk about their experiences of living with hepatitis. One aspect of the group is support while another is socialising regularly with people who are going through the same sorts of challenges as you. It’s a great way to deal with those feelings of isolation and aloneness. You can call Garry on the Hepatitis Infoline

Hepatitis B support on the Internet Hepatitis B Support List A worldwide information and support group, dedicated to providing timely resource information and support to all those involved with Hepatitis B. www.hblist.org/

Hepatitis C support/ discussion groups Brunswick Hepatitis C Support Group

1800 703 003 if you want to either attend a meeting or would like to learn more about how the support group works.

Garry Sattell Community Participation Coordinator (Support Group Facilitator)

Upcoming Support Group dates in 2013

March 17

Group meets monthly. (See advertisement

April 21

at right side of this page)

May 19

Frankston Hep C Discussion Group SHARPS

June 16

20 Young Street, Frankston

July 21

Hep C Nurse visits weekly on Tuesdays 10.00am – 1.00pm Call Melissa 9781 1622

Hepatitis Infoline

English

Call to talk to an Educator about hepatitis. Information: We can answer questions and mail information to you. Support: We can provide support for a range of issues and concerns. Referral: We can refer you to other organisations and services.

The Hepatitis Infoline is a free and conﬁdential service for all Victorians.

Hepatitis C Information Line. To use an interpreter with this service ﬁrst call 131 450

Chinese

Amharic

Khmer

Farsi

Arabic

Vietnamese

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Send to: Hepatitis Victoria Suite 5, 200 Sydney Road Brunswick, Victoria. 3056