good liver march 2013

The Newsletter of Hepatitis Victoria

March 2013

Good Liver

Applying for a liver –the hows and whys

Julie Pavlovic, Liver Transplant

Coordinator, explains the process

leading to a liver transplant.

Staying well after a liver transplant

It’s vital that post-transplant patients

are engaged in their health care to

make the most of this new opportunity.

Personal stories fromliver transplantees

Frank Carlus and Shane Laffy share

their experiences of having liver trans -

plants and gratitude to their donors.

Liver transplantation

2

Staff contacts:

Melanie EagleCEO

Telephone: 9385 9102

[email protected]

Garry IrvingPrograms Manager


[email protected]

Lisa NultyOffice Coodinator


[email protected]

Alex TaylorPrisons Program


[email protected]

Amy KirwanPrison Project Officer


[email protected]

Isabella NataleYoung People’s Project Officer


[email protected]

Felicity OmarAboriginal Program


[email protected]

Louisa WalshProject Coordinator

Hep C: Take Control Program


[email protected]

Garry SattellCommunity Participation Program


[email protected]

Jessie Di BlasiDevelopment Coordinator


[email protected]

Contact and postal address:

Hepatitis Victoria

Suite 5, 200 Sydney Road,

Brunswick, Victoria. 3056

Telephone: (03) 9380 4644

Facsimile: (03) 9380 4688

Email: [email protected]

Website: www.hepvic.org.au

HepatitisInfoline

1800 703 003

Contents

3 Communiqué

From the desk of the

Chief Executive Officer.

4 In the news

6 Applying for a new liver –

Position description

Julie Pavlovic outlines the process

leading to performing a liver transplant.

8 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.

9 Crunching the numbers –

Liver transplant statistics

Chronic hepatitis C causes more liver

transplants in Australia than any

other condition.

10 A personal story – Frank Carlus

Frank Carlus tells his story – all the

lows and highs of going through a

liver transplant.

12 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.

13 Fred Negro cartoon

Lily Liver moves into her new home!

14 Organ donation by

people with hepatitis

People with hepatitis can donate their

organs to medicine? Myth or reality?

15 Aboriginal Program report

15 Moving in – Amy Kirwan

Our new Prisons Project Officer

16 Young Blood

17 Hep C Connect – A case study

18 Hep C: Going Viral

19 Hepatitis Victoria membership

20 Liver clinics list

21 Contacts

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: [email protected]

Autumn 2013

of Good Liver we pay tribute to the people

who have undergone this life saving

procedure. We also think of the people with

serious liver disease who never get a chance

to access treatments like transplantation, and

that fact that with improvements in treatments

and services end-stage disease in viral

hepatitis is largely preventable. We bear

all this in mind as we strengthen our efforts

to achieve and deliver on our new

strategic goals.

Warm regards

Melanie Eagle

CEO

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

3

CommuniquéFrom the desk of the Chief Executive Officer

Welcome 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

community where there are no new infections

of viral hepatitis, and where those who have

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.

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.

Another exciting dimension of 2013 is that it

is the year Hepatitis Victoria will celebrate 21

years of service to the Victoria community.

We intend to hold some events to mark our

history and achievements, and also to build

even further on what we have accomplished.

Meanwhile to more sombre matters. For the

first time, Good Liver is dedicating an entire

issue to transplantation.

While fortunate that the medical expertise

exists to provide transplants – and you can

read some positive personal accounts in the

following pages – liver transplants arising

from chronic viral hepatitis is actually some–

thing in theory we should not even need to

discuss. If people with viral hepatitis were

being tested, diagnosed, and able to access

treatment and monitoring early, and if society

invested in new and more effective treat–

ments, fewer people with hepatitis B or C

would reach end stage liver disease, and

we would see a drop in demand for

transplantation for people with viral hepatitis.

But instead the facts are these:

• One third of liver transplants in Australia

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

people with end-stage liver disease are

not connected to transplant services.

• 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

even being considered for transplantation.

• Many of these transplants and deaths

are preventable with proper access to

testing, treatment, and monitoring.

With increases in the number of people with

viral hepatitis, and the ageing Australian

population, there is likely to be more demand

for liver transplants into the future. We are

already seeing this occur in the US, and

Australia is likely to follow suit.

Transplantation is an important issue for the

viral hepatitis community, and in this edition

STOP

PRESS!

4

In the newsArticle exerpts and published Letters to the Editor from major newspapers

Demand for livertransplantation set toincrease in the USAn 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

may decrease as these patients grow older,

the study authors said.

The researchers analysed data from the

Organ Procurement and Transplantation

Network between 1995 and 2010, and found

that nearly 127,000 new candidates for first

liver transplant registered with the network

during that time.

Forty-one percent of those patients had

hepatitis C. People born between 1941 and

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.

“The dire projections in [hepatitis C virus]

complications spurred our investigation of

age-specific trends in liver transplantation

demand,” study lead author Dr. Scott

Biggins, of the University of Colorado School

of Medicine, said in a journal news release.

The investigators also found that between

2000 and 2010, rates of new liver transplant

candidates with hepatitis C and liver cancer

quadrupled in those who were born between

1941 and 1960.

Tasmania, Queensland, the Northern

Territory, the Australia Capital Territory and

New South Wales all achieved their highest

ever annual organ donation outcomes in

2012. The breakdown of donors in 2012 was:

New South Wales – 88; Victoria – 92;

Queensland – 78; South Australia – 29;

Western Australia – 32; Tasmania – 15;

Northern Territory – 8 and ACT – 12.

Pioneering surgery usingcow heart tissue saveswoman with incurable liver cancerA team of British doctors has managed

to save the life of a woman in Liverpool

suffering from an incurable liver cancer

thanks to a pioneering surgery through

which they rebuilt her liver by using cow’s

heart tissue.

Michelle Morgan-Grainger was diagnosed

with a rare and incurable form of liver cancer

back in October 2010. While she was initially

told by doctors that the cancer could not be

cured, she underwent a pioneering form of

surgery at the Aintree University Hospitals

NHS Foundation Trust where the doctors

removed the tumor along with a large portion

of her Inferior Vena Cava (IVC) and went on

to reconstruct the major blood vessel by

using tissue, known as bovine pericardium,

from a cow’s heart.

“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

in heart surgery for a while but employed in

just six liver surgery cases, four of which

we’ve performed”, the consultant

hepatobiliary surgeon, Hassan Malik said.

“Over the coming decade, the ageing of those

infected with [hepatitis C virus] will challenge

the transplant community to reconsider

current treatment plans given the projected

increase in liver transplantation demand,

particularly from patients with [hepatitis C

virus] and liver cancer,” Biggins said.

“Many of these patients may not be healthy

enough for transplantation, and the number

of liver transplants in patients with [hepatitis

C virus] may decrease,” he added.

Organ donation andtransplantation report shows steady progress Australian families are being urged to decide

and discuss their donation decisions in an

effort to build on the generosity of those

families who in 2012 agreed to their loved

one becoming an organ and tissue donor.

A total of 354 Australians became organ

donors in 2012, representing a 5% increase

above the 2011 outcome of 337, and a 43%

increase since 2009. The 2012 outcome of

1,052 transplant recipients from deceased

donors represents a 4% increase (or addi–

tional 43 recipients) above the 2011 outcome

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

Associate Professor Stephen McDonald

said, “Australia achieved its highest ever

number of liver transplant recipients at 230,

compared to the 213 recipients in 2011. This

represents an 8% increase over 2011 and a

24% increase since 2009.

5

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

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 trans-

mission, 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

Hep C: call for more actionNeedle 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

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 foraccess to new therapies

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.

“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.

radiological scans and procedures, heart

tests, endoscopic procedures) and interviews

with members of the multidisciplinary

transplant team. The assessment usually

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

undertaken as an inpatient if the patient is

unwell. The purpose of the assessment is to

assess the extent of the liver disease and to

identify any associated problems with other

organs that may make the liver transplant too

risky. Associated problems may be corrected

if possible.

Patients and family get

to know the LTU team,

which consists of

medical staff, surgical

staff, transplant coord -

inators, allied health

staff- dietician, physio -

therapist, psychiatrist,

pastoral care, occu -

pational therapist and

social work. Patients

and family are encour -

aged to ask questions

and learn about trans -

plantation and its

risks. At the end of the

assessment process

all results are

Transplantation has become an accept -

able form of treatment for many liver

related diseases. With improvements in

knowledge, surgical skill and immunosup -

pressive medication the success rate and

long term survival of transplant recipients

has greatly improved and the patient

population continues to grow.

The Liver Transplant Unit (LTU) at the Austin

Hospital, is a unique service to Victoria and

Tasmania. It is the only liver transplant unit in

Victoria and Tasmania and receives referrals

state wide. Each year approximately 120

patients are referred for liver transplant ation

assessment. At least 70 of these are admitted

for a formal assessment to determine their

suitability for placement

onto the transplant waiting list.

The conditions that can lead to liver transplant

are very varied. Hepatitis B and C used to be

unsuitable for transplantation, but now with

the development of anti-viral medication,

transplantation is an option for people with

viral hepatitis.

Patients are referred to the Austin LTU usually

via specialists, GPs or other Hospitals. The

majority of patients referred to LTU have either

a confirmed diagnosis or at least a suspected

diagnosis. The diagnosis is confirmed with

patient interview, blood tests, radiological

procedures and physical assess–ment.

Once the results are collaborated a plan for

assessment, treatment and care can be made.

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.

The liver transplant assessment consists of

a variety of medical tests (blood tests,

6

collaborated and discussed within the team

as to whether the patient is suitable for liver

transplantation. Those patients who are not

suitable for liver transplantation are either

referred back to their specialist for continuing

care or are monitored by the liver specialists .

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.

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

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

Still waiting

Die on waiting list

DelistedAssessed

Rejected

Deferred

Patient andGraft surviving

Died post-transplantation

What happens...

Activated

Referred

Waiting

Graft failed

Transplanted

Diseased liver removed

Anastomoses

Hepatic artery

Common bile duct

Portalvein

Inf.venacava

A.

B. Donor liver transplanted

7

Waiting for a liver transplant can be taxing on

patients, the constant wondering “when is a

liver going to become available” often puts

lives and dreams on hold. Family relation -

ships are often tested, as the focus is on

keeping the patient in optimal health. Waiting

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

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.

Some patients need to go on hold – to treat

an infection or stabilize their liver disease.

Once treated or stabilized they are then re-

activated onto the waiting list. Some patients

however, die on the waiting list as a suitable

organ has not been found.

DonationWhen 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

information has been obtained, the organ

donor coordinator contacts the liver

transplant coordinator and relays the

information. The liver transplant

coordinators discuss the potential offer with

the liver transplant surgeon and physician.

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).

On certain occasions the liver is able to be

split into 2 halves. A child and adult are then

able to be transplanted, however this is

dependent on the anatomy of the liver and is

not suitable for all livers. Wherever possible,

if the liver is able to be split, this

is undertaken.

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

transplant ation. Preparation for

liver trans plantation can take up to

12 hours – blood tests, chest x-ray,

antibac terial 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 untrans plantable when viewed by

the lead surgeon, the liver transplant

coordinator is then notified and the recipient

surgery is cancelled.

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.

Liver transplantation requires an extra -

ordinary 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>

The Liver Transplant Unit relies on everydepartment in the hospital for theirexpertise to ensure a successful

outcome for our patients.

Aliver transplant is a life changing event,

and can restore health to people with

hepatitis B or hepatitis C who are in end-stage

liver disease. It has usually come after a long

time spent on a waiting list, with lots of

contact with both gastroenterology specialists

and transplant specialists. It can be an

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

to make the most of this new opportunity.

So how can you keepyourself healthy after a liver transplant?

Take all medications as

prescribed, keep all doctor

appointments and get all

recommended tests. Medications

post transplant help the body to

accept the new organ, as well as

assist with fighting infections. You may

also be on specific treatment for your

viral hepatitis. All of these medications

need to be taken regularly, without

skipped doses, to be effective.

You will also have lots of medical

appointments in the months after your

transplant, and contact with the clinic

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.

Monitor your health. Your doctor

or nurse may have instructed you to

monitor some aspects of your health,

such as blood pressure, temperature

and weight. It is important that you do

this as directed by your doctors and

nurses and report back any changes

or problems. Similarly, if you start

having any unusual symptoms, issues

with pain or fatigue, or you become ill,

you should contact the transplant clinic.

8

Liver 2.0: Service and maintenance guideStaying well after a liver transplant

Know your medications. It is

important that you know the

medications you are on, doses and

what they do. This can be quite

challenging initially because there

may be a lot of medications and a big

change from your previous regime.

Tell your doctor about any other

medications (even over-the-

counter) you are taking. Transplant

medications can interact with a lot of

different medications and drugs – it is

important to check with your doctor

before taking anything new.

Eat a healthy diet. A diet low in fat

and salt, and high in fruits, vegetables,

whole grains and fibre is essential for

whole body health. Many people with

advanced liver disease require fluid-

restrictions, but this can change after

transplant – ask your doctor. After the

transplant you will speak to a dietitian

who can guide you on the types and

amounts of food to eat, and what to

avoid, to maintain good health.

Avoid alcohol and smoking.

Smoking and alcohol can both do

damage to your new liver, and should

be avoided post-transplant.

Exercise. Ask your doctor or

physiotherapist about exercise post-

transplant. You should be able to

make a gradual return to exercise, but

this will need to be done in

consultation with your treating team.

Regular exercise can help you to

maintain a healthy weight – it is not

uncommon to put on a few kilograms

after transplant.

Avoid infection. The transplant

drugs need to alter the function of your

immune system so your body won’t

reject your new liver. Unfortunately

this means that you are more

susceptible to all sorts of infections.

Try to avoid people who are sick,

practice good handwashing, avoid

crowded spaces like public transport

at peak hour, and talk to your doctor

about regular vaccinations you may

need. Some foods which put you at

higher risk of food poisoning (such as

sushi, shellfish, food in bain-maries

and buffets, processed meats) may

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

to a long and healthy life with your new liver.

People with viral hepatitis who have had a

transplant are welcome to be part of our self

management programs at Hepatitis Victoria.

If you’re interested, contact Louisa

([email protected]) or the Infoline

1800 703 003 to find out more.

Reference

Australian National Liver Transplant Unit.

Information Manual for Liver Transplant

Recipients and Their Families. January 2009.

Louisa Walsh

Take Control Coordinator

Hepatitis Victoria

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9

With over 200,000 Australians currently

living with hepatitis C and 11,000 new

infections each year, chronic hepatitis C

causes more liver transplants in Australia

than any other condition.i Around one-third of

liver transplants performed in Australia are

due to liver damage caused by the virusii,

however transplants generally only occur

when liver disease would lead to death within

two years without a transplant or if other life-

threatening complications have occurrediii.

Despite hepatitis C being the leading cause of

liver transplantation in Australia, the chance

of developing severe liver complications with

hepatitis C is quite low. After 40 years of living

with the virus, the chance of developing liver

failure or liver cancer for which the only

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

in an ageing population was contributing to a

greater demand for liver transplant relating to

hepatitis C. More than three quarters of new

patients on the liver transplant register in the

US between 1995 and 2010 had hepatitis C

and were born between 1941 and 1960. This

figure quadrupled between 2000 and 2010,

indicating a sharp increase in demand for liver

transplant among older patients with hepatitis

C. This is a trend likely to be mirrored in

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

Australians and New Zealanders die each

year from complications relating to viral

hepatitis, however only 70 of 250 liver

transplants performed in the two countries

are in individuals with chronic viral hepatitisvi.

Approximately one in ten people on the

waiting list for a liver transplant will pass

away before one becomes availablevii.

One drug company (Janssen) that manufac -

tures treatment drugs for hepatitis C has

commissioned a study which found that

widely available anti-viral treatment could

prevent 2,200 deaths from virus-related

complications and around 10,000 people

could be prevented from having serious

liver disease developing after living with

hepatitis Cviii.

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

transplant will only rise, as it has done in

the US. This will particularly happen as

those with hepatitis C age and the disease

progresses. If treatment is scaled up to

reach a much larger proportion of those with

chronic hepatitis C, particularly in light of new

and more effective treatment regimens, the

need for transplants amongst this group

could potentially decline.

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 life-

threatening complications in 30% of cases.

With adequate monitoring and treatment

when needed, people with chronic hepatitis B

will not need liver transplants.

With both hepatitis B and C having poor

treatment uptake in our community and

untreated disease potentially leading to

severe complications that may require liver

transplants, the importance of increasing

treatment rates cannot be underestimated

Amy Kirwan

Prison Project Officer

Hepatitis Victoria

References

i. McDonald, T. (2012) PBS decision on Hepatitis

C drugs looms ABC News

www.abc.net.au/news/2012-08-23/hepatitis-c-

treatment-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

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

vii. Australasian Viral Hepatitis Conference

(2012) Key facts and figures, published online

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-c-

treatment-decision-looms/4218946

Crunching the numbersAustralian liver transplant statistics

Extremely low treatment rates amongst those with chronichepatitis C ( less than 2% ) increases the likelihood ofindividuals progressing to more serious liver disease

From

the DonateLife Book of

Life:

http://www.donatelife.gov.au/resources/book-of-

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

Reprinted with permission from the author and DonateLife

10

Frank Carlus was surprised tofind out he had hepatitis C.Moving on with his busy lifehe soon realised there weremore surprises in store.

My Hep C diagnosis came about quite

by chance, long before I started to

suffer it’s worst effects, and was not

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

told that I had Hep C.

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

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

she responded. Some further questioning

and a passing reference was made to the

possibility of a liver transplant, should I ever

need it in the future.

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

active lifestyle. So life went on, there was a

career to pursue, overseas travel, family,

sport. I wouldn’t say the issue was fully

forgotten, but it was certainly pushed to

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

diagnosis and suggested that they get tested.

I sensed some skepticism, after all what

might have I got up to while living away and

at university? Had I been using drugs?

Eventually they all got tested and

unfortunately I was not alone. My mother

and younger sister tested positive for chronic

Hep C, and one of my older sisters carries

the antibodies as evidence of contact with

the virus. My mother would eventually die as

a direct result of liver failure. My younger

sister continues in the quest to find a cure

to this insidious bug.

Initially life went on for me, but more

concerning symptoms would inevitably

appear and start to undermine my general

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

after my original diagnosis, the tell tale

symptoms started to take their toll and I was

referred to the Alfred’s Liver Clinic.

A year or so of close monitoring, a short

course of interferon, all my body could take at

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

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

cirrhotic and there was no going back. Soon

enough the subject of transplantation came

up again.

The formal referral to the Austin’s Liver

Transplant Unit came as a bit of a shock at

first. Surely there would be other solutions to

help me beat this. Apparently not! I was

placed on the liver transplant waiting list.

By mid 1999 I was down for the count. No

longer able to drive or do any thing involving

even minor exertion. I managed to stay at

work for a few more months thanks to the

strong support of my wife, employer and work

colleagues. My wife would have rather I’d

stayed home, but I wasn’t prepared to give

up, not just yet.

By then I had become used to short hospital

stays at the Austin, to undergo tests and

minor procedures and fight off infections.

I got to know the staff and the routines and

developed a great respect and confidence in

their work. My work was in the health field

and I knew the pressures that health services

work under.

Mid November, helplessly waiting, feeling my

self get weaker and sicker by the day, I got

the call – my turn had come up. With great

excitement and some trepidation my wife,

daughter and I made our way to the Austin

and the pre-op process started, but within a

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

bad news came. Some issues with the donor

liver meant it was not suitable for me and we

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!

Many weeks would pass, my health fast

deteriorating, my mood and confidence

dropping. I suffered terrible leg cramps, poor

digestion, esophageal varices, internal

bleeding, constipation and terrible

Personal storyFrank Carlus

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

Frank Carlus

From

the DonateLife Book of

Life:

http://www.donatelife.gov.au/resources/book-of-


Reprinted with permission from the author and DonateLife

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

my body and the immune suppressed state of

my body immediately post transplant was its

perfect playground. The virus was having a

ball and playing merry hell with my new liver,

it tested not just my reserves but the know–

ledge and resolve of the liver transplant and

other specialists at the Austin and beyond.

11

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

won the first decisive battle, but not before my

new liver had been severely damaged, a ten

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

The last 13 years have been relatively

smooth sailing. I was able to resume work

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

I could say I am a model post transplant

patient, although unfortunately there is

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

near misses. Some of my contemporaries

have sadly passed on.

Post transplant I’ve continued to pursue a

lifestyle that would honor my donor, the

transplant team, and all of those who have

supported and encouraged me throughout

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

up for sainthood just yet.

Life is meant to be lived, challenges need to

be confronted, some risks need to be taken.

One does not need to be reckless to enjoy

all that life has to offer.

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

based team, sponsored by the Better Health

Channel, has raised over $100,000 for a

number of health related organizations.

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 super -

natural 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

12

At Hepatitis Victoria’s AnnualGeneral Meeting in 2009,musician, Shane Laffy spokeof his discovery that he hadhepatitis C and his subsequentliver transplant. Shane’s livertransplant story is told herefor Good liver readers.

Ihad 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

happy-go-lucky type.

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. 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

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.

Life afterdeath, Shane’sstory 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

Personal storyShane Laffy

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 relation -

ship 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.

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

When you have your liver transplant and then get discharged home, there’s a euphoriathat happens . Mine hasn’t gone away yet.

I still think it’s just amazing.

...with Derryn Hinch.

Jo Fraser

Steve Dagg

Paul Stewart

Shane Laffy

13

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

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

The Transplants

(guitar and bass). Also Derryn Hinch is

coming along with Judith Durham (the

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

Musician

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.

VOILA!OILA!VOILA!

14

Organ donationCan people with hepatitis be organ donors?

To learn more about organ donation visit

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

decide if you wish to be a donor, and discuss

the issue with your family and friends.

Article supplied by DonateLife

Ed’s note: We often talk about organ

donation in Hep C: Take Control, and

sometimes I get asked if signing up to the

organ donor register means you have to

disclose your health status to your family.

Your family knowing your medical history may

make parts of the donation assessment

process quicker, however, if someone is

identified as a potential organ or tissue donor,

they will have lots of tests done to determine

their health status, and their medical records

will be retrieved and read. A decision will then

be made by the medical team as to whether

the organs and tissue are suitable for

being transplanted into a recipient.

Part of this testing involves looking

for blood borne viruses, which

means that your family does not

have to be able to inform the

doctors of your full medical

history for a decision to be

made.

Illustra

tion

by S

wiv

el D

esig

n

In recent years the number of organ donors

and transplant recipients has increased

steadily, however, there is still more than

1,500 Australians waiting for an organ

transplant.

Although 80 percent of Australians support

donation, many Australians have still not

discussed their wishes with their families, or

are unsure if they would be able to donate.

A common myth is that you are not eligible to

donate if you have been diagnosed with

transmissible diseases, like chronic hepatitis

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).

Very few people die in such a way

that organ donation is possible, so

every potential organ donor is critical.

People with hepatitis are able to donate

their organs and every effort is made

to find a suitably matched recipient.

Often an organ from a donor with

hepatitis will save the life of a

potential recipient with hepatitis or a

person with only days or hours to

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.

One donor can transformthe lives of up to 10 peopleand significantly improve thelives of many more.

Last year 92 Victorians gave life-changing transplants to

267 Australians.

Many Australians do not know that less

than two percent of people will die in

hospital in the specific circumstances

where organ donation is even possible.

Every donation counts and it is

important for everyone to discuss their

wishes regarding organ donation with

their loved ones, as they will be asked

to give the final OK.

DonateLife Victoria’s

State Operations Manager,

Kelly Rogerson.

15

Ph

oto

Mic

k T

sik

as

. S

MH

.

Young BloodFor young people with hepatitis. Personal story... Imagine

Imagine 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 perspec -

tive 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.*

Josh

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

K D Y A P N Y C F C S O E K L Y R L N E

K K O D I Y T X Y S N C R I F X A A A C

T Y F C A L F E E C I L M N L N N T B I

X E N O T R A N S P L A N T E K S I S D

S F M T Z O E R I T F O T A P A P P I E

E G X E Y R R E T I I T S Q N R L S R L

S O D Z A O N S I S S N A P J P A O B E

R Y S W X T B Z A V U F E R O R N H Y S

U R A M S T N E M E G A G N E R T K C T

N C O M M U N I T Y R D F T Y C I L N E

D E S A E C E D R E I C S W O O I N H C

S H O R T A G E S S L I N R O N O D E H

E U S S I T V N C E G P G A I S L L K N

B J K K I I G U F E V A O C P E U R X I

I O B O L V S Z R Y N I A E S N N O P Q

Y E W B J S H E A R T L L K P T G W M U

E K K E E Z X T F V K K I D N E Y C W E

F O F Y L R H W T J Z N L F P R L H O P

S P K X I H T T M G B M O L O F U M I P

AUSTRALIA

AWARENESS

BOWEL

BRISBANE

CLINICAL

COMMUNITY

CONSENT

CORNEA

CYCLOSPORINE

DECEASED

DECIDE

DISCUSS

DOCTORS

DONOR

ENGAGEMENT

FAMILY

HEART

HOSPITALS

INTESTINE

KIDNEY

LIVER

LIVES

LUNG

NURSES

ORGAN

PANCREAS

PEOPLE

RECIPIENTS

REGISTER

SHORTAGE

SKIN

TECHNIQUE

TISSUE

TRANSPLANT

WORLD

XENOTRANSPLANT

FIND-A-WORD by Lauren Proudfoot

* From the DonateLife, Book of Life:

www.donatelife.gov.au/resources/book-of-


Reprinted with permission from the author

and DonateLife

16

Moving inAmy Kirwan

After a very productive 2012, I am

excited and looking forward to the

New Year. Of note from last year were two

important projects that I worked on:

Firstly, I attended the Mob in the Margins

Forum – Ararat, Warrnambool, Swan Hill

and Cobram.

This Forum was to open high level

discussions with CEO’s and Aboriginal

Community Controlled Health Organisation

(ACCHO) board members on Viral Hepatitis

prevention in Victorian Aboriginal

communities. As Hepatitis C rates are 6 times

higher in Aboriginal Communities, over 80%

of new hepatitis C (HCV) infections are from

injecting drug use. Needle Syringe Program

(NSP) services are proven to reduce HCV

and HIV transmission and increase support to

a vulnerable group in the Aboriginal

population. The Yiaga ba Wadamba Report

recommendations show that Aboriginal

people who inject drugs want NSP services

from ACCHO and culturally competent

mainstream services. I accompanied

VACCHO staff and we were fortunate to

spend a day at the people at Lake Condah

Mission who were holding their annual

Strengthening Community Day.

Secondly, VACCHO Chronic Disease and

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.

This was a great opportunity for Hepatitis

Victoria to network with other organisations,

government departments and ACCHO’s from

rural, urban and regional Victoria. It was

also an excellent chance to develop

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.

This iniative involved developing and

conducting the first Australia-wide study

describing levels of knowledge, risk practices

and access to health services in relation to

sexually transmitted infections (STI’s) and

blood borne viral infections (BBV’s) among

young Aboriginal and Torres Strait Islander

(TSI) people aged 16 to 29 years.

Another exciting project is our multi–

organisational partnership with the Aboriginal

Community Development Workers from the

Melbourne Sexual Health Centre; Konnect -

Jesuit Social Services; Cancer Council

Victoria; Victorian Aboriginal Health Service

(VAHS); to deliver educational sessions to

the Aboriginal prison population.

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

Aboriginal Program

Hi, 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

adult prison system, women and prisoners

from non-English speaking backgrounds)

can be better served by the organisation

and their opportunities to become educated

about viral hepatitis can be improved.

I have spent the past nine years working in

public health in Victoria. My early beginnings

were in community health over on the

Richmond public housing estate working to

assist health service providers to respond

to the needs of culturally and linguistically

diverse communities. For the last five years I

have worked in the harm reduction field with

a range of roles across policy advocacy,

research and frontline service delivery. It is

in this field that I feel I have found my niche,

particularly through my work with prisoners

and injecting drug users, two of Hepatitis

Victoria’s key population target groups. I am

also a qualified social worker.

Each person has a story. While these

stories may have common themes, such as

disadvan tage and poor physical and mental

health, each person has had their own

journey. Sometimes the most important

thing anyone can do is listen and just treat

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

17

Last 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

Infoline caller and the corresponding Hep

Connect volunteer.

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.

She wanted to understand what he might go

through so she was able to provide him with

the support he needed. Hepatitis Victoria

Infoline staff connected Sophia to a male

volunteer who has been through treatment.

Sophia – Infoline callerSometimes, 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.

It would be great to talk to other partners of

people who have been through treatment.

David – Hep Connect Volunteer

Recently I received my first request

through the Hep Connect program to speak

to somebody about my experience of going

on hepatitis C treatment.

We were able to cover a lot of topics during

our chat. These topics included preparation

for treatment (or, in some cases, my lack of

preparation) and understanding how and

when to administer the drugs and be

educated about their possible side effects.

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.

I tried to relate as best I possibly could

about my thoughts and emotions while on

the interferon/ribavirin medication. I have to

say that a lot of my thoughts and feelings

during the treatment were quite negative.

Largely owing to this often negative

experience, I cautioned against rushing

onto treatment unless it really is an urgent

matter. Perhaps the fact that I didn’t clear

the virus has tended to make me view my

story in a poor light.

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

the hope that it can assist somebody else

in their journey.

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

Hep ConnectA case study

18

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 q Diner

Club

Name on card: Signature:

Title: First name: Surname:

Address:

Postcode: Email: Phone: ( )

Expiry date:

In the first half of 2013 HepatitisVictoria is running the popular andsuccessful Hep C: Take Control as an Internet-based program.

We are currently looking for people with hepatitis

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

to help us trial our Internet-based group.

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.

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.

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),

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

your needs.

Previous participants in Hep C: Take Control are also

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

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 ofHep C: Going Viral, or would like more information, please contactLouisa Walsh at Hepatitis Victoria on1800 703 003 or [email protected]

HepC:Going ViralDo 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?

19

JOIN BEFORE THEPRICE RISE IN JULY,(currently $77 for organisations)

WITH NO RENEWALUNTIL JULY 2014!

Having remained unchanged for several years, the

Hepatitis Victoria membership fee is set to rise

on 1 July, 2013

We are committed to growing our organisational

capacities and will be able to provide our members

with the best possible tools, services and resources.

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.

Hepatitis Victoria membershipMake a difference. Become a member of Hepatitis Victoria.

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: [email protected]

PROMOTIONAL OFFER!

20

Liver clinics and liver specialistsTo 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.

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.

ALBURYAlbury Community Health – Hepatitis Clinic

Suite 3, Albury Wodonga Specialist Centre

2 Ramsey Place, West Albury.

Contact: (02) 6058 1800

Fax: (02) 6058 1801

BAIRNSDALEBairnsdale Regional Hospital

Bairnsdale Regional Health Service

Specialist Consulting Rooms.

Princes Hwy, Bairnsdale.

Contact: 5150 3478

Fax: 5150 3404

BALLARATBallarat Base Hospital

Drummond Street, Ballarat

Contact: 5320 4211

Fax: 5320 4472

BALLARATBallarat Community Health

210 Stuart Street, Ballarat

Contact: 5338 4500 or 5320 7500

Fax:5339 3044

BENDIGOBendigo Health

Cnr Arnold and Lucas Streets, Bendigo

Contact: 5454 8422

Fax: 5454 8419

BOX HILLBox Hill Hospital

16 Arnold Street, Box Hill

Contact: 9895 3333 (ask for OPD)

Fax: 9895 4852

CLAYTONSouthern Health Monash Medical Centre

246 Clayton Road, Clayton

Contact: 9594 6035

Fax: 9594 6925

CRANBOURNESouthern Health Monash Medical Centre

Contact: 95943177

Fax: 9594 6245

EPPINGNorthern Hospital

185 Cooper Street,

Contact: 8405 8000

Fax: 8405 8761

FITZROYSt Vincents Hospital

35 Victoria Parade, Fitzroy

Contact; 9288 3771

Fax: 9288 3489

FOOTSCRAYWestern Hospital

Eleanor Street, Footscray

Contact: 8345 6291

GEELONGGeelong Hospital

Ryrie Steet, Geelong

Contact: 5246 5117

Fax: 5221 3429

GIPPSLANDCentral Gippsland Health Service

Guthridge Parade, Sale.

Contact: 5143 8600


HEIDELBERGAustin Hospital

145 Studley Road, Hiedelberg

Contact: 9496 2787

Fax: 9496 7232

MAROONDAHMaroondah Hospital (Eastern Health)

Out-Patients, Ground Floor, Davey Drive,

Ringwood East

Contact: 9895 3333

Fax: 9871 3202

MOORABBINBayside Liver Clinic (Alfred Hospital)

999 Nepean Highway, Moorabbin

Contact: 9276 2223

Fax: 9276 2194

MILDURAMildara

234 Thirteenth Street, Mildura

Contact: 0408 581 781

PARKVILLERoyal Melbourne Hospital

Corner Royal Parade and Grattan Streets,

Parkville

Contact: 9342 7212

Fax: 9342 7277

PRAHRANAlfred 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

SHEPPARTONGoulburn Valley Health

50 Graham Street, Shepparton

Telephone: 03) 5832 3600

SPRINGVALESpringvale Community Health

55 Buckingham Street, Springvale

Contact: 9594 3088

TRARALGONLatrobe Regional Hospital

Private Consulting Suites 3 and 4

Princes Highway, Traralgon West.

Contact: 5173 8111

WARRNAMBOOLWestern Region Alcohol and Drug Centre

(limited hepatitis treatment services)

172 Merri Street, Warrnambool

Contact: 1300 009 723

WODONGAMurray Valley (Private) Hospital

(Dr Tim Shanahan – Gastroenterologist)

Nordsvan Drive, Wodonga. Vic.

Contact: (02) 6056 3366

WODONGAWodonga Regional Hospital

Vermont Street. Wodonga

Contact: (02) 6051 7413

Liver clinics

21

Contacts

Community-based hepatitis C treatment servicesCommunity 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

Health Works

4 –12 Buckley Street, Footscray

Contact: 9362 8100

Barkley Street Medical Centre

Dr Elizabeth Leder

Monthly visiting Gastroenterologist

and hep C Nurse

60 Buckley Street, St. Kilda

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

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

as part of Southern Health Services

140–154 Sladen Street, Cranbourne

Contact: 9594 3089

North Richmond

Community Health

Dr John Furler

Weekly visiting Hep C Nurse

23 Lennox Street, Richmond

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

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

North Yarra Community

Health

Dr Ohnmar John

Weekly visiting Hep C Nurse

75 Brunswick St, Fitzroy

Contact: 9411 3555 or 9288 2259

Dr John Sherman

GP who does hepatitis C treatment

Also opiate replacement therapy

131b Hopkins Street (rear)

(entry via Chambers Street), Footscray

Contact: 96891602

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

Living Room

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

Access Health

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

Inner Space


syringe program


and treatment.

4 Johnson Street, Collingwood

Contact: 9468 2800

www.nych.org.au/services/drug.html

South East Alcohol and

Drug Service (Forster Street)

Primary healthcare and needle syringe

program

84 – 85 Forster Street

Dandenong

Contact: 9794 7895

Health Works


syringe program


and treatment

4-12 Buckley Street

Footscray

Contact: (03) 9362 8100

www.wrhc.com.au/Services_HEALTH.html

Services-Metro/statewideCOMPLEMENTARY MEDICINESNational 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

22

COUNSELLING SERVICESCaraniche

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.


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


www.nexuspsychology.com.au/

MEDICAL SERVICESRoyal District Nursing Service



Indigenous HealthNgwala Willumbong Co-op Limited

93 Wellington Street, St Kilda

Indigenous drug and alcohol service



VACCHO (Victorian Aboriginal Community

Controlled Health Organisation)

17 – 23 Sackville Street, Collingwood.



Web: www.vaccho.org.au

Victorian Aboriginal Health Service

186 Nicholson Street, Fitzroy


Fax:9417 3897

Sexual HealthMelbourne Sexual Health Centre

580 Swanston Street, City


Free call: 1800 032 017

Multicultural Health and

Support Service, Carlton

81 – 85 Barry Street, Carlton.

HIV, hepatitis C and sexually

transmissible infections


Go to: www.ceh.org.au/mhss.aspx

MISCELLANEOUS SERVICESANEX (Association of

Needle Exchanges)

Suite 1 Level 2, 600 Nicholson Street,

North Fitzroy



HIV/Hepatitis/STI Education and

Resource Centre at the Alfred

Moubray Street, Prahran

Statewide resource centre on HIV/AIDS,

Hepatitis and Sexually Transmissible

Infections



Web: www.hivhepsti.info

Turning Point Alcohol

and Drug Centre, Fitzroy

54-62 Gertrude Street



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


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


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



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 - RegionalThese 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


Camperdown Hepatitis C Support worker

Contact: Jo Sloetjes



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



Web: www.can.org.au

HEPATITISVICTORIASUPPORT 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

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

April 21

May 19

June 16

July 21

23

Jigsaw Youth Health Service

Contact: Rochelle Hamilton


Latrobe - Mobile Drug Safety Worker

Helen Warner

Mobile: 0438 128 919

Mildura - Sunraysia Community Health

Contact: Anne Watts


Moe Community Health Centre


Portland - Glenelg Southern Grampians

Drug Treatment Service

Contact: Bev McIlroy


Shepparton Community Health


Wangaratta - Ovens and King

Community Health Centre

Contact: Diane Hourigan


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


Hepatitis C support on the InternetAustralia Hepatitis C Support (AHCS)

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/

Hepatitis B support on the InternetHepatitis 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 groupsBrunswick Hepatitis C Support Group

Group meets monthly. (See advertisement

at right side of this page)

Frankston Hep C Discussion Group

SHARPS

20 Young Street, Frankston

Hep C Nurse visits weekly on Tuesdays

10.00am – 1.00pm

Call Melissa 9781 1622

Chinese

Amharic

Khmer

Vietnamese

Farsi

Arabic

EnglishHepatitis C Information Line. To use an interpreter withthis service first call 131 450

Hepatitis InfolineCall 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.

1800 703 003

www.hepvic.org.au

Your donations help us to provide information, services,

advocacy, resources and support for people affected by

hepatitis C, health profess ionals and members of the general

Your donations make a difference!

I would like to donate the following amount:

■ $20 ■ $50 ■ $100 $_____ (Your choice)

I have enclosed my cheque/money order/cash or

Please debit my credit card for $______

Type of card: Visa/MasterCard

Name on Card

Card number:

■■■■ ■■■■ ■■■■ ■■■■Expiry Date

Please send my receipt to:

Name

Address

Suburb/City

Postcode State

Send to: Hepatitis Victoria

Suite 5, 200 Sydney Road

Brunswick, Victoria. 3056

public. All donations of $2 or more are tax deductible.

If you do not receive your receipt promptly, then please call

Halo Jones on 03 9380 4644.

good liver march 2013

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