Good Liver July 2015 edition

The Magazine of Hepatitis Victoria

July 2015

Good Liver

The fight against global hepatitis goes global

Inspiring policy development in hepatitis B

For the first time the World Health Organisation (WHO) has committed to a global strategy on viral hepatitis, pursuing a co-ordinated response.

Australian scientists have found a potential cure for hepatitis B, with a promising new treatment proving successful in preclinical models.

Inspiring Advocacy Leader of the Australian Sex Party, Fiona Patten, and Labor party member, Lizzie Blandthorn, took a proactive step in reaching out to the Victorian Parliament following 1 a meeting with Jen Anderson.

Staff

Contact and postal address:

Melanie Eagle

Hepatitis Victoria

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

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

Telephone: (03) 9380 4644 Facsimile: (03) 9380 4688 Email: admin@hepvic.org.au Website: www.hepvic.org.au

HepatitisInfoline

1800 703 003

Garry Irving Programs and Operations Manager Telephone: 9385 9109 garryi@hepvic.org.au Martin Forrest Health Promotion Program Manager Telephone: 9385 9111 martin@hepvic.org.au Damian Salt Office Coordinator Telephone: 9380 4644 admin@hepvic.org.au Susan Peterson Health Promotion Officer Telephone: 9385 9105 susan@hepvic.org.au Aurora Tang Health Promotion Officer Telephone: 9385 9103 aurora@hepvic.org.au Melissa Wright Health Promotion Officer Telephone: 9385 9104 melissa@hepvic.org.au Shinen Wong Health Promotion Officer Telephone: 9385 9108 shinen@hepvic.org.au Garry Sattell Community Support Services Coordinator Telephone: 9385 9110 garry@hepvic.org.au Marina Mazza Community Participation Project Officer Telephone: 9385 9112 marina@hepvic.org.au

Good Liver is produced by Hepatitis Victoria, with support from the Victorian Government.

The opinions and language expressed in this magazine are not necessarily those of Hepatitis Victoria or the Department of Health.

Reader response Your comments or experiences in regard to any articles in Good Liver are welcome.

Email: admin@hepvic.org.au

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Zoe Peck Development Coordinator Telephone: 9385 9106 zoe@hepvic.org.au Sophie Broughton-Cunningham Policy and Advocacy Officer Telephone: 9385 9123 sophie@hepvic.org.au Graphic Design: Swivel Design 0435 733 206

Contents

3

CommuniquĂŠ

From the desk of the Chief Executive Officer

4 6

De-livering the news

Celebrating inspiring stories

7

The fight against hepatitis goes global

8

Inspiring policy developments

9

Inspiring policy deleopment in hepatitis B

SKiNK

Specialised Drug Program improvements

10

Potential hepatitis B cure

Inspiring advocacy

Hepatitis issues raised in Victorian Parliament

12

Inspiring stories

Starlie and Amanda

14

Inspiring new heroes

Jennifer Critchlow

15

Inspiring new heroes

Elaine Fitts

16

Western Liverability Festival

Calendar of events

17

The silent disease

Parliamentary inquiry into hepatitis C in Australia

18

Workforce development

Training and workshops

20 21

Liver clinics Contacts

Communique

From the desk of the Chief Executive Officer

Joffa Corfe and Melanie Eagle at the Joffa: Isn’t That Life book launch.

I

recently attended the book launch of our dear friend, judge of our StreetShot

program, active supporter, and Hep Hero, Joffa Corfe: Joffa Isn’t That Life.

The introduction to his book starts with a quote by Winston Churchill, “We make a living by what we get, we make a life by what we give”. To me Joffa epitomises that quote. He gives his all to make a difference to the many causes he champions. He works tirelessly to rid the world of stigma and discrimination. And his life is rich.

To me he is inspirational. Joffa asked me, along with some others, to contribute to his book. As I wrote at the time, Joffa is the type of person where, each time you meet him, you feel a blast of confirmation that the things we strive to do are worth doing, and emboldened to do more”.

So it is very fitting that the theme of this issue of Good Liver is INSPIRING. We look at some of the inspiring people and organisations working to eradicate viral hepatitis, and to challenge the discrimination that surrounds it.

Happy reading.

Melanie Eagle

3

De-livering the news On World Hepatitis Day, events will take place around the world focussing on preventing hepatitis B and hepatitis C. The date of 28 July was chosen for World Hepatitis Day in honour of the birthday of Nobel Laureate Professor Baruch Samuel Blumberg, discoverer of the hepatitis B virus and developer of the first hepatitis B vaccine.

The key messages for World Hepatitis Day 2015 are: Prevent hepatitis – know the risks Unsafe blood, unsafe injections, and sharing drug-injection equipment can all result in hepatitis infection.

Prevent hepatitis – demand safe injections Two million people a year contract hepatitis from unsafe injections. Using sterile, single-use syringes can prevent these infections.

Prevent hepatitis – vaccinate children Approximately 780 000 persons die each year from hepatitis B infection.

A safe and effective vaccine can protect from hepatitis B infection for life.

Prevent hepatitis – get tested, seek treatment Effective medicines exist to treat hepatitis B and cure hepatitis C.

Inspiring snippet Did you know that one of the all time great cricketers, and former West

Hep Connect Team wins Volunteer Award

Indian team skipper, Brian Lara was diagnosed with hepatitis B in 2002?

According to Sporteology e-news, Lara’s future as a cricketer was considered to be uncertain by medical practitioners when he was diagnosed with hepatitis B. He was dropped from the ICC Champions Trophy and subsequent tour. The actual nature of Lara’s illness was kept a quiet as the West Indian team management had refused to disclose the problems. Lara was rushed to the hospital after scoring a century in a pool game where the illness was discovered.

You can’t keep a good man down – Lara continued his cricketing career, scoring test cricket’s first ever (and so far the only) 400, in 2004 against England, and regaining his world record back from Mathew Hayden.

World Hepatitis Day Update from the World Health Organisation On World Hepatitis Day, 28 July 2015, WHO and partners will urge policy-makers, health workers and the public to act now to prevent infection and death from hepatitis.

Photographed accepting the award below, are the Minister for Health: Jill Hennessy and our HepConnect representatives: Carol Steele, Ross Williams, Pam Woods and Graham Ashton from left to right. Missing, but part of the team: Jean Crook The Hepatitis Victoria’s HepConnect Team continues to inspire us, so we were very excited that they were awarded the ‘Improving the Patient Experience Award’ by the Minister for Health at the Volunteer Awards on Wednesday 13 May. The Hep Connect Team is a group of people with lived hepatitis experience. They provide telephone peer support services via the HV

In May 2014, World Health Assembly delegates from 194 governments

Infoline – a vital service as they clearly understand and identify with

adopted a resolution to promote global action to prevent, diagnose, and

clients’ health challenges. There is no other service offering like this in

treat viral hepatitis.

Victoria. Over the past two years the Hep Connect team has had

4

over 150 connections with community members, providing

He is one of a group of artists, either Aboriginal or hailing from a

valuable support. Congratulations Team!!.

war-torn country overseas, who is featured in the Wyndham WAR

New websites for Hepatitis Victoria www.hepvic.org.au The Hepatitis Victoria official website has recently been revamped, reinvigorated and improved to make it easier for our community to find what they need in relation to viral hepatitis.

We have also included many new interactive features to ensure the site is as useful and practical as possible. We will be continuing to roll out new pages and functionality over the coming months, so keep an eye out for future developments on the website. We hope that you enjoy the improvements!

We also recently launched a dedicated website for our annual photographic competition, StreetShot. www.streetshot.org.au Now in its sixth year of operation, StreetShot is a unique way of inviting young people to share, through their own creativity, what they understand about viral hepatitis – a silent killer that affects more than 120,000 Victorians.

exhibition. The exhibition is running from 18 July – 14 September at the Wyndham Art Gallery, Wyndham Cultural Centre, 177 Watton Street, Werribee. For further information go to: www.wyncc.com.au/ art_gallery/war

Diverse cultural and community groups get on board for World Hepatitis Day Hepatitis Victoria’s annual World Hepatitis Day grants program has been running for more than seven years now. The program aims to help improve community understanding and reduce the stigma of viral hepatitis by recognising this special World Health Organisation endorsed day.

The community grants are given to not-for-profit organisations and must be used to support events/activities which:

• Increase awareness of viral hepatitis • Reduce stigma and discrimination associated with viral hepatitis.

This year we received a great range of applications from rural and

This year’s entries to the StreetShot competition close on 17 July.

They will be exhibited at the Centre Space @ Metrowest, Victoria

urban community health organisations, with the following organisations

University, from 7 August.

• Ballarat Community Health • Ballarat and District Aboriginal Co-Op • Bendigo Health Infections Diseases Service • Galliamble • Goulburn Valley Health • Health Works/CoHealth • Innerspace/CoHealth • Lakes Entrance Aboriginal Health Association • Mallee District Aboriginal Health Service • Ngwala Willumbong Co-Op Ltd • North Richmond Community Health • ReGen • SHARPS • CoHealth and VAHS • Winja Ulupna Women’s Recovery

Hep Hero wins art inaugural award

receiving grants to run events to mark World Hepatitis Day 2015:

Congratulations to all – we wish you all the best for a successful WHD!

Peter Waples-Crowe, one of our long-term Hep Heroes, and also a former HV board member of six years, representing the interests of Indigenous people, is also now a recognised artist.

Peter, who also played a key role in the Blood Born Virus team at Victorian Aboriginal Controlled Community Health Service (VACCHO), won the $2000 inaugural Wyndham Art Prize People’s Choice Award presented on 24 June.

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SKiNK

Celebrating inspiring stories

O

ur SKiNK page on Facebook, has

MAURICE

TAHLIA

grown to close to 500 likes and over

“I have had hepatitis B since I was four.

“This is my second tattoo which I got a

30 thoughtful entries to our competition.

The image on the left is the virus under

year after my 3rd suicide attempt and

We have so far awarded prizes of

a microscope. Since the virus will never

during my constant battle with depression

leave me neither will the tattoo”

and anxiety. This was what I used to

Andrew Smith tattoo prints, a Lauren Fenlon print, and two $250 Dangerfield

meditate to and had always calmed me

vouchers. In the next month, we will be

down. To me it means this bad moment

awarding prizes thanks to our wonderfully

will pass as every other bad moment has

generous sponsors (including a custom

passed before you”

Reid bicycle, Harmon/Kardon wireless speakers, and a custom canvas print from Lowe Airbrush).We are asking the community to share their stories around tattooing, and to inspire conversations about strategies to keep tattoos safe and sterile.

To enter, go to: www.skinktales.com

TAMMY

going to be clouded by personal taste, it

“I got my tattoo after my pa, who had cancer was in hospital in Toowoomba. We went up to see him for what would be the last time. On the way home he asked us to count the windmills from Toowoomba to Ballarat. When we got home we rang him up and told him that there was 270 windmills from Toowoomba to Ballarat.

Later that night, he passed away. It was the last thing he heard before going. I like to think he asked us to do that so our minds were occupied on the way home.

Once we rang him to tell him how many there was that was his cue that we were

doesn’t mean I am wrong”.

home safely and it was okay to pass on.”

Here are some examples of the inspiring entries we’ve received so far: JESS “This is a quote by Jessica Rabbit which sums me up perfectly. I may be judged as bad by my tattoos and style but this is me.

Your perception of art or people is always

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THE MAJO R PR WINN IZE ER O F SKiN will b e ann K ounc ed on 28 JU L Y WOR LD H EPAT ITIS DAY

The fight against hepatitis goes global For the first time the World Health Organisation (WHO) has committed to a global strategy on viral hepatitis.

It is inspiring and significant that the organisation has taken the proactive step to pursue a co-ordinated response to this serious issue.

The following is a summary of the most recent report prepared by WHO: Evolving the three Global Health Sector Strategies in response to consultation feedback (An Interim Report, June 2015) INTRODUCTION This Interim Report has been prepared to support the Europe Regional Consultation on the three global health sector strategies 2016-2021 that seek to cover: HIV/AIDS; viral hepatitis; and sexually transmitted infections (STIs).

It provides an overview of the key regional and stakeholder consultations undertaken from January-May 2015 and the emerging ideas for the evolving strategies that will help inform the next phase of consultations from June through to December 2015.

It identifies key stakeholder considerations that are helping to inform WHO’s thinking about key content areas and themes that will be included in the subsequent draft strategies.

• Holistic understandings of the

It is intended as an update to the initial draft strategy documents that were made public to support the April online consultation process.

health service continuum

• Access considerations

(affordable drugs, monitoring drug

The three global health sector strategies will be finalized for consideration by the 69th World Health Assembly (WHA69) in May 2016 in

resistance, scale up)

• Contributing to Universal Health Coverage (UHC)

response to discussion and resolutions from past Assemblies.

• Need for advocacy to address

STRATEGY DEVELOPMENT CONSULTATIONS TO DATE

• Stigma and discrimination

Since the start of 2015 a series of consultations have been held with: Member States; technical experts and partners; civil society; development partners; UN agencies and other stakeholders including through a five week public online consultation.

Between now and May 2016 the following

health inequity

A consistent recommendation has emerged from stakeholders that a fifth theme focusing on strategic information and accountability be included.

As of June 2015 it is proposed that each strategy follows a similar structure based on five strategic themes in the table below: WHO has also been urged to be more explicit about the commonalities across the three (HIV/ AIDS; viral hepatitis; and sexually transmitted infections (STIs)) strategies including a clearer focus on: • Modes of transmission (sexual, injections, Mother-Child) – integrated prevention response

consultations will be undertaken:

• The Europe Regional Consultation • The South East Asia Regional Consultation • Other global regional conferences and meetings (including the International AIDS Society Conference in Vancouver and the Global Hepatitis Summit in Glasgow)

• Discussion in/around WHO Regional Committees (September/October)

• Member States Briefing

• 137th Executive Board • World Health Assembly 69 Importantly, final decisions on strategy structure and content will only be taken after all regions and stakeholders have been heard.

Hepatitis Victoria would like to thank WHO for providing this update. We look forward to further progress reports as they become available.

Making a compelling case for action Frameworks for action: Universal health coverage and the continuum of care

Goal: ‘Ending’ epidemics by 2030 – alligning with emerging SDGs

Targets: 2020 and 2030 targets and milestones.

Strategic Direction 1 Information focus and accountability The who and the where

Strategic Direction 2

Intervention for impact

The what

Strategic Direction 3 Delivering for quality and equity The how

Strategic information for situation assessment analysis planning and montoring.

Identifying high impact interventions across the continuum Applying the continuum to key populations and key locations and settings. Creating an enabling environment.

Strategic Direction 4 Financing for sustainability The financing

Covering the costs to ensure access to needed health and services without financial hardship.

Strategic Direction 5 Innovation for acceleration The future

Moving beyond existing technologies, approaches and systems to change the response trajectory.

Strategy implementation: leadership, partnership, accountability, monitoring and evaluation

7

Inspiring policy developments

Specialised Drug Program improvements

W

A

B

C DE

e are inspired by the sensible policy

Organisation (WHO) Collaborating Centre

We at Hepatitis Victoria would like to see the

making at the Federal level in relation

for Viral Hepatitis at the Doherty Institute in

same approach taken in relation to hepatitis

Melbourne these combined changes are a

C prescribing and treatment.

huge step forward in the effective treatment

Allowing GPs to initiate prescribing of

of hepatitis B.

medications for hepatitis C, and resourcing

medicines from the pharmacy of their choice,

“Allowing authorised community-based

workforce development to support the

regardless of whether they are prescribed

prescribers to prescribe hepatitis B

accredited community-based prescriber

in a hospital or community setting. Under

treatments (using Streamlined authority

program so more GPs can prescribe

current arrangements, eligible community

codes – no phone approvals!), and

would benefit the healthcare system and

based prescribers and patients are required

community pharmacies to dispense these

community in a number of ways. This would

to be able to access these medicines.

medications – will go a very long way to

include reducing the demand and cost

to access to hepatitis B medication.

The Commonwealth Department of Health announced in mid-June that from 1 July improvements are being made to the way that some PBS medicines under the Highly Specialised Drugs Programme will be processed. The process for prescribing and dispensing HIV antiretroviral therapy (ART), clozapine for maintenance therapy and hepatitis B medicines will be simplified.

The changes will make it easier for practitioners to prescribe and for patients to have their prescription/s dispensed, better reflecting current clinical practice where treatment is increasingly being provided in the community setting Patients will be able to access these

incurred within hospitals by enabling GPs to treat people living with viral hepatitis within their community, and getting medicines from their local pharmacy.

Allowing authorised community-based prescribers to prescribe hepatitis B treatments... will go a very long way to improving access to treatment for people living with hepatitis B Without GP prescribing, the Victorian Government will need to spend almost $3 million in the tertiary care system over the next two years in order to meet the target of the National Hepatitis C Strategy 2014-2017.

The process to prescribe these medicines will be the same for all prescribers, with

improving access to treatment for people

streamlined Pharmaceutical Benefits Scheme

National Hepatitis B Strategy”, says Ben.

(PBX) Authority prescription requirements applying for community, private and public hospital based prescribers.

living with hepatitis B, in accordance with the

“Hopefully the authorisation of communitybased practitioners to do this in Victoria happens as soon as possible to allow these

According to Associate Professor Ben

benefits to be quickly realised for Victorians

Cowie, Director of the World Health

living with hepatitis B”.

8

This approach will be even more relevant as more treatment options become available to the market over the coming 12-24 months.

For further information: http://www.nhv.org.au/news/2015/6/24/ department-of-health-releases-faqs-for-hivand-hepatitis-b-medicine

Inspiring developments in hepatitis B Potential Hepatitis B cure

A

B

C DE

Dr. Marc Pellegrini (background) and Dr. Greg Ebert at the Walter and Eliza Hall Institute.

A

ustralian scientists have found a

“Birinapant enabled the destruction of

“It is relatively easy for an organism to

potential cure for hepatitis B virus

hepatitis B-infected liver cells while leaving

adapt to a drug, but it is very difficult to

(HBV) infections, with a promising new

normal cells unharmed. Excitingly, when

adapt to a change in the host cell,” he

treatment proving 100 per cent successful in

birinapant was administered in combination

said. “The virus relies on the survival

eliminating the infection in preclinical models.

with current antiviral drug entecavir, the

mechanisms of the host, so if it can’t

infection was cleared twice as fast compared

exploit them, it dies. Such a monumental

with birinapant alone. We are hopeful these

change in the virus’ environment may be

promising results will be as successful in

too big a hurdle for it to adapt to.”

Australian patients are now the first in the world to have access to the potential treatment – a combination of an antiviral drug and an anti-cancer drug - which is in phase 1/2a clinical trials in Melbourne, Perth and

human clinical trials, which are currently underway in Melbourne, Perth and Adelaide.”

Dr Pellegrini and colleagues will now investigate if the same strategy could

The combination treatment, developed

be applied to other chronic infectious

in collaboration with TetraLogic

diseases. “Pathogens that infect and

Pharmaceuticals based in Malvern,

reside inside host cells, including viral

Pennsylvania, US, targets the cell signalling

diseases such as HIV, herpes simplex

pathways that the hepatitis B virus uses to

and dengue fever, and bacterial infections

keep host liver cells alive.

such as tuberculosis, could all potentially

“Normally, liver cells would respond to

be cured in a similar way,” he said.

incurable.

infection by switching on a signal that tells

Patients are not currently being recruited

Dr Marc Pellegrini, Dr Greg Ebert and

the cell to destroy itself ‘for the greater good’,

for the phase 1/2a clinical trial.

preventing further infection,” he said.

Adelaide.

Scientists from Melbourne’s Walter and Eliza Hall Institute developed the combination treatment using birinapant, a drug developed

by US biotech company TetraLogic Pharmaceuticals for treating cancer. Hepatitis B is a chronic viral disease that is currently

colleagues at the institute used their studies

The research was funded by the

“However our research showed that the

Australian National Health and Medical

virus commandeers the liver cells’ internal

Research Council, the Australian

communications, telling the cells to ignore

Dr Pellegrini said the treatment was

Research Council and the Victorian

the infection and stay alive. Birinapant flips

successful in curing infections in preclinical

Government.

the cell survival ‘switch’ used by the virus,

models, leading to a human trial that began

causing the infected cell to die.”

of the behaviour of hepatitis B virus in infected cells as a basis for the treatment.

in December 2014.

Article contributed by the ‘Walter and Eliza Hall Institute’.

Treatments that enable the host cell to rid

“We were 100 per cent successful in curing

itself of the virus, rather than targeting the

HBV infection in hundreds of tests in

virus itself, may prevent drug-resistant strains

preclinical models,” Dr Pellegrini said.

of HBV emerging, Dr Pellegrini said.

9

Inspiring advocacy

Hepatitis issues raised in Victorian Parliament

and Jen, as well as the questions

and comments from Lizzie and Fiona, on the matters that they think need urgent consideration:

JEN ANDERSON

“

I spent some time working in a remote indigenous community in the far north east region of WA – a place called Turkey Creek. It highlighted to me that indigenous communities don’t have the same options as people living in major cities to access appropriate health services.

Given the proportionally extremely high rate of hepatitis prevalence amongst our indigenous communities we need to look at increasing access to testing and treatment options in remote areas, and also rural and regional centres, if we are going to have any chance of “closing the gap.

Providing a clear and easily accessible testing and treatment system for those living with hepatitis C is also vital if we are to tackle this health crisis head on.

A strong and consistent awareness raising campaign would help to ‘normalise’ this condition, and lessen the fear for people about coming forward for tests. And we must widen those referral pathways so that treatment is easily available to all who seek it – for instance, making treatment available through local GP’s.

10

FIONA PATTEN

Finally, waiting too long for treatment can pose serious health risks. With the new treatment options that are hopefully going to become available here soon, treatment is far less scary for those living with hepatitis C to contemplate. So not only do we need to get these drugs listed on the PBS and make them readily available and accessible to everyone.

It’s simple – we have to bring

this health crisis under control.

FIONA PATTEN

“

I can’t believe that Victoria has such a narrow and outdated approach

to handling this important issue. Given the appropriate diagnosis and treatment, we know that hepatitis is actually quite manageable to live with.

Many other states and territories across Australia have current action plans in relation to hepatitis C and hepatitis B, which complement the currently implemented National Strategies. Sadly, Victoria doesn’t have one in place.

With four Victorians dying every week as a consequence of viral hepatitis, and fewer than five per cent of accessing treatment, we just have to do better. The Victorian government must develop an action plan to tackle hepatitis C and hepatitis B. There are other areas where we really need

Lizzie Blandthorn

One of the main risk factors for transmission of hepatitis C is through the sharing of unsterile equipment such as needles. People who access Needle Sharing Program (NSP) in the community won’t be able to access sterile injecting equipment while they are in custody. The inability to access sterile injecting equipment while in custody directly undermines activities to reduce the rate of transmission.

It’s time for our approach to testing to change. I commend the initiative PRONTO - a rapid testing service for HIV which has been running for a few years now. Hepatitis C is far more prevalent than HIV and I would like to see the implementation of a rapid testing program for this condition too.

Rapid testing would enable increased early diagnosis and treatment; preventing huge cost to the hospital system. Prevention is vital if we are to avoid liver disease, liver cancer and death.

The Victorian Government’s role is clear: increase diagnosis rates and, for those that are positive, increase entry into appropriate clinical care and support.

Hepatitis Victoria, and other health organisations are doing wonderful and vital work to try and battle viral hepatitis, but we need to get behind them with better action plans and resources to end the reign of this silent killer.

“

F

ollowing are perspectives from Fiona

JEN ANDERSON

“

We were inspired recently when two of our state politicians took the significant step of raising the issue of viral hepatitis in the Victorian parliament. Leader of the Australian Sex Party, Fiona Patten, and Lizzie Blandthorn, Labor party member for Pascoe Vale, both took the proactive step following a meeting with Hep Hero and Community Advocate, Jen Anderson where they discussed the issues, and the urgent need for practical, positive strategies to be implemented to deal with the impact of the disease.

LIZZIE BLANDTHORN

and two in three women in Australian prisons

On 25 June, Lizzie Blandthorn also posed a question to the Minister for Health: I appreciate the opportunity to raise a matter for the attention of the Minister for Health.

The action I seek is that the Minister for Health work with the community to design a strategy that addresses the prevalence of

have hepatitis C infections.

hepatitis B and hepatitis C in Victoria.

to concentrate our efforts, such as the prison population.

People in custody experience higher risk of exposure to and rate of contraction of hepatitis C – estimates are one in three men,

Hepatitis B and C are two different viral

In the electorate of Pascoe Vale, a

expired. In 2014, Victoria, along with all other

infections transmitted through blood and

district with a large migrant population,

states and territories, signed up to all five

bodily fluids, causing inflammation of the

it is estimated that 2 per cent of people

national strategies for blood-borne viruses,

liver. In some cases hepatitis can cause

suffer from this debilitating condition, with

including for both hepatitis B and C. Despite

chronic infection of the liver, eventually

approximately 228 people living with chronic

becoming a signatory to the national strategy

leading to liver failure and cirrhosis. Recent

hepatitis B and around 628 people living

for blood-borne viruses, the former coalition

statistics reveal that in Victoria alone

with chronic hepatitis C. In light of these

government failed to develop an action plan

approximately 56 000 people live with chronic

figures, more needs to be done to reduce the

for hepatitis B and C. Developing an action

hepatitis B and approximately 65 000 people

prevalence of hepatitis.

plan is essential if we are to begin to address

have been diagnosed with chronic hepatitis C.

To date, Victoria’s response to this issue

the prevalence of hepatitis in Victoria.

Measured against other states and

has languished behind the responses of

I ask that the minister work with the

territories, Victoria has the highest

other states. South Australia, New South

community to identify priority actions that

prevalence of hepatitis B and the second-

Wales and Western Australia have taken

will help reduce transmission and increase

highest prevalence of hepatitis C among

the lead on this issue through their prompt

treatment options for those in the community

its population. In addition, research has

implementation of action plans. Unlike these

suffering from hepatitis B and C.

revealed that hepatitis is most common

other states, an action plan for hepatitis

amongst certain population groups.

B has never existed in Victoria, and the

A large proportion of those diagnosed with

previous action plan for hepatitis C has now

the disease are from migrant communities.

armaceutical listed on the ph treatments be e certainly mad scheme. I have s fit ne the y be s s lth monwea on Jill Henne Fiona Patten n to the ns to the com to tio se ta on en sp es re pr , n re ealth questio s. They ca Minister for H Constituency ese new drug portance of th June im 10 ne , Ju lth ks, which 25 ea H n, w r Ms Patte nce in 12 ee Minister fo e viral cleara ev r hi fo ac le g in hepatitis Va liv oe s ople nt in term of r for Pasc with some pe k the membe quite significa an ly th al I re Recently I met e. is rate su is Victorian important ve an efficacy . In 2014 the what is a very , and they ha g ts in en is m ra e at ng ro with hepatitis tre st l pe s a very e nationa rtainly ho th r obviously ha mmitted to fiv r cent. So I ce be co pe t em en 94 m t m e rn ou Th ve ab to te go of quickly list r electora d-borne vernment acts e people in he go th lation to bloo r re lth fo in ea n w io es on ss gi l m te pa stra com benefit for ng, as wel transmitted ve enormous th and wellbei ly ha al al ill he xu w r ei It se th s. d r ug an fo and viruses these dr ns. sue that nds of Victoria challenging is s and thousa nd sa as for this very l ou al infections. th of rvices le for raising and health se hepatitis governments r for Pascoe Va te specifically be am la I . re em e ith m w e os g th th in k of I than Two cacy about are grappl es ct r ongoing advo configurations any other stat pa he M . r im C fo e d is th tit an ng r pa ci B and he this matte the work mitted to redu ve current to continuing certainly com in Australia ha munity. I look forward m I co e. e su th is is on d and territories th C and the member patitis C an of hepatitis B t is doing with relation to he e of the in en m s m so rn an pl ith ve w n go tio ng is ac th to worki oving and ement the look forward ns terms of impr d these compl scoe Vale in ity organisatio Pa un r m hepatitis B an fo m ose who co tic barriers for th really fantas gies. the structural removal of e ng ci th r du fo national strate re g tin ca C. that are advo hepatitis B and ent of a silent the managem are dealing with n described as of te s of rm is te s in iti at rs Hep barrie ing every Victorians dy neral practice. . killer, with four is hepatitis in ge tit pa he l ra vi of e nsequenc barriers to week as a co ians, e of structural Hepatitis Victoria final comment r cent of Victor ere are a rang pe Th 2 an th of hepatitis e In 2014 mor management d an , t is en tit m pa at We are obviously pleased to see that ve the tre ople, lived he ese matters ha or 120 000 pe ral practice. Th em are th ne of ge hepatitis is being raised as an issue and nt in ce C r on 5 pe n submissi but fewer than to in the Victoria n tio ed is es ra qu discussed in Parliament. The comments y en M be atment. ealth accessing tre the commonw n ia to e or ct ad Vi m e e th w and questions from Fiona and Lizzie come that : when will is C the minister is iry into hepatit in qu an in pl ry n ta tio en ac straight to the heart of the problem. We parliam plement its government im lia. ra st are very keen to see that these specific Au ?� in C is patit relation to he Benefits al tic eu questions and issues are responded to with ac m ar Further, the Ph ered and id ns co s ha the necessary actions and policies that mittee Advisory Com titis C pa he w ne e MUST come from the State government, d that thre recommende under the guidance of the Minister for Health.

11

Inspiring stories Starlie and Amanda

One of our great supporters, Amanda Geike recently submitted her story to The Age Good Weekend, hoping the paper would consider running it in the ‘Two of Us’ section.

Unfortunately they weren’t able to assist. We thought it deserved a run. So here it is in Good Liver. In the meantime we continue to hope and strive for a greater recognition and response to viral hepatitis, from mainstream media.

been there for her also and that the good has

And for all these years I’ve been well and

outweighed the difficulties and complexities

symptom free – until now. Although I always

of our relationship - things I have come to

knew it would likely rear up to bite me one

believe characterise most if not all mother/

day I was still profoundly shocked to be told

daughter relationships.

recently that day had come.

I have had a lot of difficulties, disappointments

Now that this bad news has sunk in I am

and tough times but the love I felt and

determined to do all I can to try and remedy

received from her made my life worthwhile

this terrible situation that I and 250,000

and worth striving to improve. Recently

other Australians diagnosed with hepatitis

becoming a grandma has added a whole

C are having to deal with. And also the

other glorious layer.

thousands who remain undiagnosed. It is

Artist Starlie Geikie, 40, and her mother

worry over the years but guess I did my best

I wish I hadn’t given Starlie so much cause for

Amanda, 60 have always had an incredibly

within my circumstances.

close bond. Recently Starlie has grown

I was diagnosed with hepatitis C more than 25

from daughter to supporter and champion of her mother who is battling liver disease

years ago just after testing became possible.

incredibly frustrating to know that there is a cure available which is being used in so many places around the world, but which we can’t yet access in Australia. We hope the government takes on board the recent recommendations by PBAC on new hepatitis

At the time I was so happy that it was hepatitis

C treatment.

AMANDA:

C and not HIV. When my doctor’s receptionist

While other countries are rejoicing in the

I had Starlie when I was very young – 20.

told me after a blood test in 1990 that I needed

knowledge that they could potentially

While not always a “perfect” mother Starlie

to come in and see the doctor straight away

eliminate this massive epidemic by curing

can be in no doubt of the huge love I have for

I just remember praying l wouldn’t be HIV

those who sufferer, and halting the spread

her and have felt from the beginning.

positive.

of the disease, Australia cannot. Until this

A failed marriage, childhood abuse and all

When told I had this “new hepatitis” I laughed

manner of insecurities became less painful

with relief! How little I really knew. In fact, how

and problematic because I had the love of

little anyone really knew about the disease

Absolutely true to form Starlie has taken

my cherished daughter. I hope I have always

and the course it would take.

up the battle and as always is my greatest

12

approach changes, hepatitis C will continue to be a huge burden on the Australian economy.

support. Together we are a strong and determined team, and in a short period of time have managed to get on national TV and radio in an effort to raise awareness about the desperate need for these drugs that we all so badly need to live to be made available, and ultimately wipe out this epidemic all together.

My daughter, her partner and my grandson are everything to me and I am so lucky to be such a big part of their lives. Not a day goes by that I don’t express gratitude for what I DO have in my life. I feel very positive that I will be able to access a cure in time for my liver to regenerate and live a life free of the worry of the disease. I currently work voluntarily performing a very important role in the community. Once I am hep C free and my energy levels are back to 100% I plan to expand on that work. Ultimately what I wish for is an Australia where hepatitis C is no longer ravaging so many of its citizens and this can only be achieved by quickly making the cure available and providing equal treatment access.

be infected with the hepatitis C virus: backyard

So many people don’t know or understand

piercings as a teenager, acupuncture, a very

that hepatitis C doesn’t just affect

brief experience with drugs in her hippie days,

intravenous drug addicts. It affects people

and working as a nurse in the years before

from all walks and stages of life. Medical

today’s stringent OH&S protocols.

professionals have contracted the disease,

She has been in the “liver danger zone” for a long time now. Doctors have been telling her for years that a cure is just around the corner.

The result of her last fibroscan (three months ago) was pretty grim. She told me later that that day was the worst of her life. After finally feeling she had got to the stage where she was truly happy, suddenly she felt like that was all under threat. Mum has advanced liver

as have people who received blood prior to its being screened for hepatitis C. People have contracted it from tattoos and piercings and even through simply sharing a toothbrush or razor with an infected person.

There are very few people who can truly say they never made one bad, snap decision in their lives, that hasn’t had a long-term impact on them.

fibrosis, could develop cirrhosis very soon

In the case of people infected with hepatitis

if untreated and this could advance to liver

C that one bad decision could have been to

cancer and then total liver failure.

experience a hit just one time, to get a

She worked to put herself through university, and I can recall sitting under desks, as a young child, playing with pencils while mum attended university lectures.

The standard treatment protocol for hepatitis

“backyard” tattoo while on holiday abroad,

C that has remained unchanged for many

share a piercing experience as a youngster,

years is a very poor alternative to the new

or simply have been in the wrong place,

medications, that are available overseas, and

at the wrong time. How the disease was

which have a 95% success rate. In fact the

contracted should not of course affect

success rates with these old treatments are

a person’s access to the best treatment

in many cases so low and the side effects so

options. We don’t tell people who have

horrific that they are being administered to

chosen to have a poor diet or drink large

We have a deep, complex relationship that has only strengthened since I had my son. We are a very tight family unit: me, my partner and son, and mum. While I’m based in Melbourne and she’s in regional Victoria not far from Melbourne, we see a lot of each other.

less than 2% of people with the virus. This

quantities of alcohol or smoke that they can’t

treatment can last up to a year and often

receive expensive life saving medications so

people are unable to work. However the new

why is mum, who does none of these things,

drugs are taken in pill form daily for around 12

make to feel that her life is not considered

weeks with no or very few side effects.

worth the cost of saving?

I have a great admiration and respect for mum. She’s kind and thoughtful, intelligent, funny and incredibly persistent. She worked to put herself through university, and I can recall sitting under desks, as a young child, playing with pencils while mum attended university lectures.

In spite of the bad diagnosis, mum has

out, because of the dreadful stigma that

We are waiting to hear the outcome

She studied and worked hard to secure better opportunities for us both. And she has been very successful in her business life and work as a counsellor.

surrounds the virus.

of the recent Pharmaceutical Benefits

STARLIE: In many ways mum and I grew up together, and did a lot of looking after each other. It wasn’t all plain sailing when I was growing up.

I craved the normality and structure that mum evaded for quite some time.

Mum in her younger days was definitely a product of her time: flower child, hippie.

absolutely picked herself up off the ground and dusted herself off. She is doing all she can to achieve some positive change, and speak out on behalf of all those people living with hepatitis C, who are too scared to speak

Like mum, I am determined to change the course of this dreadful situation – obviously for the hundreds of thousands of people who are living a precarious existence, but mainly for my mum and for my son, who needs his grandmother for many more years to come.

Advisory Committee recommendations In many ways it is a mystery why this

to Government. If favourable we can only

disease that affects so many and contributes

hope that the time period between the

to the death of around 800 people a year

Committee’s recommendation and the

has received so little attention and is so

actual availability of the drugs won’t be too

stigmatised, while other diseases that affect

long and cause too much more suffering

There are multiple potential risk factors over a

far fewer people garner huge community

to people like my mum, and that too many

number of years that may have caused her to

support.

more lives to be lost.

13

Inspiring new heroes Jennifer Critchlow

However, not all stories end as well as mine. I have a friend who is dying from liver disease because his alcoholic lifestyle stopped him from caring for his health and getting tested in time. I know another woman whom I support who needs the medication NOW and is going to mortgage her house to raise the money for the drugs. The costs of liver transplants and caring for the dying have got to be higher than the cost of supplying the available drugs for complete cures. Something needs to be done and that is why we should all be involved.

From my journey I have learnt that education is preferable to ignorance. We are not “Typhoid Mary”.

Most people and sexual partners I have told have responded positively to my status when I have explained the ramifications and how difficult it is to get Hep C from someone else except by blood to blood. They just didn’t know. ”If hepatitis C is kept secret and underground, it spreads more easily. Knowledge is power. Fear is dangerous - discrimination, bullying and social exclusion all lead to negative outcomes for the person living with Hep C and their families”.

I am a Hep Hero because I was out and proud of my status A

dventuress, experimenter, rebel, risk taker are some words that could be used to describe myself - I tried any drug

and was an active alcoholic until 1997 when I was 43. Rode a motorcycle around Europe and Africa in 1988 for 9 months, solo.

I fight my fears...and refuse to be stopped by them. I’m scared of heights, so I have done a tandem airplane jump and bungy jumped.

Became an active member of Alcoholics Anonymous in 1997 and have been drug and alcohol free ever since, and my life is unimaginably good today.

I lived with Hep C for 35 years and decided not to be ashamed of my status, was open with everyone I came into contact with, told my class at TAFE to stay away from my blood if I cut myself and educated anyone when possible about the realities of Hep C. I was in the “hard to treat” group until 2014 when I was offered a late place on a trial of the new drugs and was cured of the disease. My viral load dropped to “undetectable” after three weeks of taking the medication, but I persisted with the required regime for three months - and have been given a clean bill of health.

14

Jennifer’s message to others:

“If hepatitis C is kept secret and underground, it spreads more easily. Knowledge is power.

Fear is dangerous - discrimination, bullying and social exclusion all lead to negative outcomes for the person living with Hep C and their families”

Inspiring new heroes constantly worried that I would develop liver cancer.

Thankfully that all changed in September 2013 when I was offered a place in a clinical trial at St Vincent’s. After only 12 weeks on the new drugs I was deemed cured, and after another six months given the all clear. This has given me a completely new lease on life and until now I didn’t realise how sick I actually was. To feel how I do now is something I never imagined would happen.

My life couldn’t be more different: I am enjoying my newfound energy with my family, beautiful grandson, at work and at the gym where I am working on getting my fitness back. I would also like to use this energy to educate the wider community about hepatitis C, and help put a stop to the stigma that it unfairly associated with it.

I would like to see the new treatments available now, so they can transform the lives of other people as they have transformed mine.

I don’t see why others shouldn’t have the same opportunity I had.

These new treatments have the potential of saving lives and should become accessible and affordable for everyone as soon as is possible. In some ways I feel guilty that I have had the privilege to take part in a treatment that should be available to anyone suffering this illness no matter how they contracted it, or what their status in life is.

I am a Hep Hero because I believe hepatitis C is a misunderstood illness, people are at times unfairly discriminated against, and I want it to be better understood. I also want the available and successful new treatments to be made available to anyone who is suffering this debilitating and sometimes life-threatening condition.

I

contracted hepatitis C from a blood transfusion after the birth of my first daughter in 1975 but didn’t know I had it until I was

diagnosed in 2008, an astonishing 33 years later. When I was told I had hepatitis C I was firstly stunned and went into shock to then make room for fear...of not knowing much about it and its implications. Suddenly all those years of symptoms finally started to make sense.

I was told there was a possible cure available and elected to participate immediately in what was the only available treatment

at the time. This conventional treatment involved weekly injections of interferon in combination with ribavirin for a total of 24 - devastating - weeks.

The side effects were terrible and made me feel even worse than I already did. It was almost impossible to keep up with my full-time job and enjoy quality time with my family. Nonetheless I persisted and completed this regime only to find it had been unsuccessful.

Concluding this I continued with my life, although hep C was now a big part of it, and struggled with the lack of energy as well as being

Elaine’s message to others:

“I don’t see why others shouldn’t have the same opportunity I had. These new treatments have the potential of saving lives and should become accessible and affordable for everyone as soon as is possible. In some ways I feel guilty that I have had the privilege to take part in a treatment that should be available to anyone suffering this illness no matter how they contracted it, or what their status in life is.”

15

© Cameron Davidson/Corbis

Elaine Fitts

Western Liverability Festival

Calendar of events 22 July – 28 August

H

epatitis Victoria is marking World Hepatitis Day with a

The Western Liverability Festival is an annual program of events

month-long Western Liverability Festival, in Melbourne’s

conducted in the weeks around World Hepatitis Day (28 July).

West – hosting seminars, information sessions, a photo competition

The festival aims to raise awareness about viral hepatitis, and

and exhibition and a video launch, and also collaborating with other

the importance of testing and treatment, within the general

organisations who are doing great things in this field.

population, but particularly in the west where there are high rates of notifications of hepatitis B and C.

DATE

EVENT NAME

EVENT FOCUS

LOCATION / HOST

22 July

Spotlight on Hepatitis B

Improving treatment, management and care for people living with chronic hepatitis B. In conjunction with the Victorian Hepatitis B Alliance (VHBA)

The Doherty Institute for Infection and Immunity.

*Plus announcement of Hepatitis B Mums resource

792 Elizabeth Street, Melbourne

24 July

Brimbank Community engagement on hepatitis B

Brimbank community event: Brimbank has more than three times the national average for rates of notification of Hepatitis. The aim of this event to increase awareness of Hepatitis B, prevention, screening and referral options, and the importance of maintaining a healthy liver.

Sunshine Market.

294 Hampshire Road, Sunshine.

Brimbank Council

28 July

WORLD HEPATITIS DAY

Worldwide 400 million people are living with hepatitis B or C. Every year 1.4 million people die from viral hepatitis and yet all of these deaths could be prevented.

Better awareness and understanding will help to eliminate this disease and save 4,000 lives a day.

Various locations: www.worldhepatitisday.org/ www.hepatitisaustralia.com/

28 July

Announcement of SKiNK Grand Prize Winner

SKiNK aims to encourage community discussion about tattoos and to promote safe and sterile tattooing practices.

www.facebook.com.au/skinktales

Doherty Hepatitis B Symposium

Hepatitis B: Past, Present and Future. On the 50th Anniversary of the discovery of the ‘Australia Antigen’ the Symposium will look at current research and future directions.

Australian Centre for Hepatitis Virology and Doherty Institute of Infection and Immunity

A creative photography competition and exhibition for young people to educate about risk factors and encourage behavioral change.

The exhibition will run from 7 –21 August.

The Centre Space, @ MetroWest.

Victoria University,

30 July

7 August

Street Shot Exhibition launch

* Plus announcement of Art inside the West, activity for custodial settings

792 Elizabeth Street, Melbourne.

138 Nicholson Street, Footscray.

10 – 14 August

Victoria University Multicultural Festival

Raising awareness of viral hepatitis with multicultural students from high risk communities.

Victoria University campuses: www.hepvic.org.au/news/1065/ western-liverability-festival-2015

28 August

Western Action Forum

Politicians, Policy Makers, Clinicians will meet to discuss the way forward for managing viral hepatitis in the West. This event is supported by the Melbourne Primary Care Network.

Western Centre for Health Research & Education, Sunshine Hopital.

176 Furlong Road, St Albans

The Western Liverability Festival Calendar of Events has been collated by Hepatitis Victoria, Hepatitis Victoria gratefully acknowledges the assistance and support of the Department of Health and Human Services.

16

The silent disease

Parliament inquiry into hepatitis C in Australia

T

he House of Representatives Standing Committee on Health released its final report into its inquiry into hepatitis C in Australia on 25 June. Hepatitis Victoria commends the report. We also call on the Victoria Government to implement the many recommendations that are within their own health and corrections spheres of responsibility.

The Report raises the level of political debate around hepatitis C higher than it has ever been before. Important issues are addressed head on - the need to tackle stigma, targeted awareness raising campaigns, increasing access to testing (including rapid testing), and increasing treatment through greater primary care.

Considerable attention was given to prisons, and while it stops short of recommending needle and syringe programs in prisons, the recommendations are consistent with this. Unfortunately, while there is significant discussion about new treatments, the recommendations do not include a call for urgent approval of these.

We do not know how the Government will choose to respond to the Report, but we hope that it will act on the recommendations swiftly and decisively.

I’d like to thank all our supporters and Community Advocates, who took the time to prepare submissions and present their very personal stories. Your support and involvement was pivotal to the good outcome. – Melanie Eagle

While Australia has one of the highest diagnosis rates for hepatitis C in the world (at approximately 80 per cent), it is estimated that 40 000 to 50 000 Australians are unaware that they are living with the disease. Exploring ways in which testing can be delivered in non-hospital settings, such as through community health clinics and medical services in rural and remote areas may increase the diagnosis rate for the disease as well as reach people who may not be able to seek medical treatment through more traditional avenues.

Approximately one per cent of people living with hepatitis C are undergoing treatment at any time. There are many reasons why the treatment rate for hepatitis C is low –

with the disease. Hepatitis C is a virus carried by many everyday Australians, however, medical practitioners may still be unaware of how it can be transmitted. The Committee recommended that there be a specific campaign targeted at those at high risk of infection, focusing on: prevention strategies and testing options, as well as a campaign focusing on people living with hepatitis C, who may not have sought advice about treatment options after their initial diagnosis. The Committee also recommended exploring ways in which the patient experience in general practice could be improved for people living with hepatitis C, through better information provision, improved treatment processes, and patient counselling.

The Committee found the need for a more robust reporting and review framework to support rates depending on the genotype of hepatitis C carried by the person infected. Further, the Fourth National Hepatitis C Strategy, the location of treatment services in hospital recommending that the Department of Health settings can make treatment difficult to access for varying reasons including geographic develop key performance indicators and annual proximity. reporting against those indicators to measure progress in addressing the challenge of hepatitis C. While Australia has one of the highest diagnosis rates for hepatitis C in the world (approximately Developed in consultation with State 80 per cent), it is estimated that 40,000 and Territory governments, and hepatitis stakeholder organisations, the Fourth to 50,000 Australians are unaware National Hepatitis C Strategy 2014-2017 is one of five national strategies aimed at that they are living with the disease. one is that current therapies are long term commitments and have varying success

From a social perspective, there is a stigma

Following is an extract of the Forward to the full Report written by Steve Irons MP, Chair of the Committee. The full report can be accessed at: http://www.aph.gov.au/ Parliamentary_Business/Committees/House/ Health/Hepatitis_C_in_Australia/Report

associated with hepatitis C which can act as a

Hepatitis C, an infectious disease is the most prevalent blood-borne virus in Australia, affecting an estimated 230 000 people.

Hepatitis C is difficult to diagnose in its early stages, and over time, hepatitis C adversely affects the liver, and may lead to cirrhosis, liver disease, and liver cancer. Hepatitis C is the leading cause of liver transplants in Australia.

to-child transmission, unsafe tattooing or

disincentive to seeking treatment. As hepatitis C is a blood-borne disease, the majority of transmissions occur due to unsafe sharing of injecting equipment. There are, however other means of transmission, including motherpiercing, or through breakdowns in routine infection control practices in a medical setting.

Transmission can also occur through receipt of unscreened blood product (received before 1990).

Raising awareness and understanding about hepatitis C can reduce the stigma associated

reducing sexually transmitted and bloodborne viruses. The strategy identifies priority populations, how actions to address hepatitis C will be implemented, and the roles and responsibilities of all stakeholders.

The Committee found the need for a more robust reporting and review framework to support the Fourth National Hepatitis C Strategy, recommending that the Department of Health develop key performance indicators and annual reporting against those indicators to measure progress in addressing the challenge of hepatitis C. Additionally, the Committee recommended that targets be set and reported against annually for the rates of testing for hepatitis C. continued on p.18

17

Blank pagedisease The silent continued

Improved testing regimes, including the use of rapid point of care testing, offer opportunities for earlier diagnosis and treatment.

During its inquiry, the Committee examined testing and treatment

Workforce Development Training and Workshops Bloody Serious Facts

Hepatitis C Strategy (NHCS) 2013-2017 including: people who

13 August: 9:30am – 1.00pm 12 November: 9:30am – 1.00pm

inject drugs, people from Aboriginal and Torres Strait Islander and

Hepatitis Victoria, 5/200 Sydney Road, Brunswick

options for several high risk groups identified in the Fourth National

culturally and linguistically diverse backgrounds, and people in custodial settings.

The development of a national strategy for blood-borne viruses and sexually transmitted infections in prisons to complement the five existing national strategies concerning these viruses and infections was also recommended by the Committee.

The Committee recommended that there be an improved focus on reaching migrant communities with high rates of hepatitis C infection, and that all Australian jurisdictions work together to address the high hepatitis C infection rate amongst Aboriginal and Torres Strait Islanders.

The Committee was also interested in the issue of needle and syringe programs in prisons, and was grateful for the evidence it received.

Evidence received will inform the ongoing broader debate in state and territory jurisdictions.

In response to evidence received, the Committee also made several recommendations concerning people in custodial settings. The Committee found inconsistencies between jurisdictions in the way prisoner health data is collected and reported, and recommended the development of a standardised approach to data collection and reporting. Improvements in this area have been identified as an important foundation for dealing with hepatitis C infections in custodial settings. The development of a national strategy for blood-borne viruses and sexually transmitted infections in prisons to complement the five existing national strategies concerning these viruses and infections was also recommended by the Committee. Thirdly, the Committee recommended that the issue of hepatitis C in prisons, including exploring the provision of safe tattooing and barbering services, and the establishment of national standards in prison health delivery be discussed as part of the Council of Australian Governments Health Council process.

The Committee greatly appreciated hearing from people living with hepatitis C. They described the effect a hepatitis C diagnosis has on their life, as well as their experiences in seeking further information about their diagnosis and treatment.

I thank all the individuals, community and health organisations and government agencies who contributed to this Inquiry. In particular, I thank the many individuals who are living, or have lived with hepatitis C who participated in the inquiry. I also thank Committee Members for their contribution and participation.

Steve Irons MP Chair

18

Bloody Serious Facts training offered in 2015 is Hepatitis C specific and designed for drug and alcohol workers, community health staff, prison staff, welfare workers, health students and anyone working with people who are at risk of or caring for someone affected by hepatitis C. Topics covered will include transmission risks, improved treatments, management and care of people living with chronic hepatitis C.

For bookings and further enquiries, call (03) 9380 4644 or email admin@hepvic.org.au * The courses are free to Hepatitis Victoria members* or $25 per person for non-members. Up to two free members per organisation per membership term.

B-informed 25 August: 9.30am – 12.30pm Training Room – North Richmond Community Health 23 Lennox Street, Richmond 3121

B-informed is an introductory course targeted at health and community workers wishing to improve their understanding of hepatitis B. This course is delivered with assistance from St Vincent’s Hospital and the Multicultural Health and Support Service at The Centre for Culture, Ethnicity and Health (CEH). The course covers the basic facts about hepatitis B testing, transmission and treatment, and the resources and support available to assist health workers and the affected communities.

For bookings and enquiries, call (03) 9418 9929 or email enquiries@ceh.org.au * The courses are free to Hepatitis Victoria members* or $25 per person for non-members. Up to two free members per organisation per membership term.

Hepatitis Victoria services

Become a member

of Hepatitis Victoria now

Hepatitis Victoria is working with and for people affected by or at risk of viral hepatitis to raise awareness and prevent transmission, and increase access and referral to quality information, care, treatment and support.

CUSTOMISED TRAINING

EDUCATION PROGRAMS

Care for Mums with hepatitis B

HEPATITIS HEROES

Hepatitis Victoria is a membership-based organisation - our members are the heart of our organisation. Membership fees help support and recognise our work in raising awareness of and understanding about viral hepatitis.

Individual $40

*Concession card holders- $15 *With lived experience - $0

Organisation $160 *10 staff or less - $100 Supporter $0

*Cannot vote or stand for Board

hepatitisinfoline

1800 703 003 JOIN TODAY! Go to http://www.hepvic.org.au/page/46/membership and follow the prompts.

An initiative of HEPATITISVICTORIA

Membership benefits include:

• Access to the latest information and resources • Receipt of electronic and printed publications • Discounted education and training for organisations

• Invitations to special events and seminars

HEP C

• Shaping advocacy campaigns and ‘change’ initiatives

TAKE CONTROL 19

Liver clinics Liver clinics and liver specialists

CLAYTON

GEELONG

Southern Health Monash Medical Centre 246 Clayton Road, Clayton Contact: (03) 9594 6035 Fax: (03) 9594 6925

Geelong Hospital

In most cases a referral is faxed to the hepatitis treatment service. The hepatitis treatment service will generally not discuss your treatment options with you until after they have received a referral from your GP.

CRANBOURNE

GIPPSLAND

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.

EAST RINGWOOD

To access public hepatitis C treatment services a referral from a GP is needed.

ALBURY Albury Community Health Centre – Hepatitis Clinic 596 Smollett Street, Albury Contact: (02) 6058 1800 Fax: (02) 6058 1801

BAIRNSDALE Bairnsdale Regional Hospital Bairnsdale Regional Health Service Specialist Consulting Rooms 122 Day Street, Bairnsdale Contact: (03) 5150 3478 Fax: (03) 5150 3404

BALLARAT Ballarat Base Hospital Drummond Street, Ballarat Contact: (03) 5320 4211 Fax: (03) 5320 4097

BALLARAT Ballarat Community Health 12 Lilburne Street, Lucas Contact: (03) 5338 4500 Fax: (03) 5332 6617

BENDIGO Bendigo Health Cnr Arnold and Lucas Streets, Bendigo Contact: (03) 5454 8422 Fax: (03) 5454 8419

BOX HILL Box Hill Hospital 51 Nelson Road (First Floor Blue Lift), Box Hill Contact: (03) 9895 3333 (ask for OPD) Fax: (03) 9895 4852

20

Cranbourne Integrated Care Centre 140-154 Sladen Street, Cranbourne Contact: (03) 5990 6789 Fax: (03) 5990 6328 Maroondah Hospital (Eastern Health) Davey Drive, Ground Floor Outpatients, East Ringwood Contact: 1300 342 255 Fax: (03) 9871 3202

ELTHAM North Eltham Medical Centre Dr Tony Michaelson Weekly visiting Hepatitis C Nurse Rhonda O’Malley 1170 Main Rd, Eltham Contact: (03) 9439 2222 Fax: (03) 9439 3662

EPPING Northern Hospital 185 Cooper Street, Epping Contact: (03) 8405 8000 Fax: (03) 8405 8524

FITZROY St Vincent’s Hospital 35 Victoria Parade, Fitzroy Contact: (03) 9231 3475 Fax: (03) 9231 3489

FOOTSCRAY

Bellarine Street, Geelong Contact: (03) 5246 5117 Fax: (03) 5221 3429 Central Gippsland Health Service 155 Guthridge Parade, Sale Contact: (03) 5143 8600

HEIDELBERG Austin Hospital 145 Studley Road, Heidelberg Contact: (03) 9496 2787 Fax: (03) 9496 7232

West Heidelberg Banyule Community Health Centre Hepatitis C Outreach Clinic as part of Austin Health.

Dr Daljean Sandhu, weekly visiting Gastroenterologist and Hepatitis C Nurse.

21 Alamein Road, West Heidelberg Contact: (03) 9496 6846 Fax: (03) 9496 2732

MAROONDAH Maroondah Hospital (Eastern Health) Out-Patients, Ground Floor, Davey Drive, Ringwood East Contact: 1300 342 255 Fax: (03) 9871 3202

MILDURA Mildura Infectious Diseases Unit 234 Thirteenth Street, Mildura Contact: 0408 581 781

Western Hospital Gordon Street, Footscray Contact: (03) 8345 6291 Fax: (03) 8345 6619

PARKVILLE

FRANKSTON

Contact: (03) 9342 7212

Peninsula Liver Clinic 141 Cranbourne Road, Frankston Contact: (03) 9770 0139

PRAHRAN

Royal Melbourne Hospital Corner Royal Parade and Grattan Streets, Parkville Fax: (03) 9342 7277 Alfred Hospital Infectious Diseases Department 99 Commercial Road, Prahran Contact: (03) 9076 2359 Fax: (03) 9076 2194

Contacts SANDRINGHAM Bayside Hepatitis Clinic (Alfred Hospital) 193 Bluff Road, Sandringham Contact: (03) 9076 2259 Fax: (03) 9076 2194

SHEPPARTON Goulburn Valley Health Centre

Community-based hepatitis C treatment services

St Kyrollos Family Clinic

Community based treatment clinics have

Contact: (03) 9386 0900

been developed to enable more people to access treatment in their local communities.

Dr Ashraf Saddik Monthly visiting Hep C Nurse 2A Moore Street, Coburg

Werribee Mercy Hospital Consulting Suites

Barkly Street Medical Centre

300 Princess Hwy, Werribee

Contact: (03) 5832 3600

Dr Elizabeth Leder

Contact: (03) 9288 2171

Fax: (03) 5831 6032

Dr David Iser visits monthly

Fax: (03) 9288 3596

50 Graham Street, Shepparton

SPRINGVALE Springvale Community Health

60 Barkly Street, St Kilda Contact: (03) 9534 0531

Primary health care centres (for people who use drugs)

55 Buckingham Street, Springvale

Cohealth (formerly North Yarra

Contact: (03) 9594 3088

Community Health)

Fax: (03) 9594 2273

75 Brunswick Street, Fitzroy

TRARALGON

Contact: (03) 9411 3555

Access Health

Latrobe Regional Hospital

Cranbourne Integrated Care Centre

Primary health care and needle syringe

Private Consulting Suites 3 and 4

Hepatitis Outreach treatment clinic

Princes Highway, Traralgon West

140-154 Sladen Street, Cranbourne

Contact: (03) 5173 8111

Contact: (03) 03 5990 6789

Fax: (03) 5173 8097

Fax: (03) 03 5990 6328

WARRNAMBOOL

Gateway Community Health

Warrnambool Physicians’ Rooms

155 High St, Wodonga

St John of God

Contact: (02) 6022 8888

Warrnambool Hospital,

Fax: (02) 6024 5792

Health Works

Health Works

syringe program

Suite 4, Wentworthh Street Consulting Rooms, Warrnambool Contact: (03) 5562 9444 Fax: (03) 5561 2699

WODONGA Murray Valley (Private) Hospital Nordsvan Drive, Wodonga

4-12 Buckley Street, Footscray

Primary Needle Syringe Programs

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: (03) 9536 7780

Primary health care and needle Hepatitis C information, support

Contact: (03) 9362 8100

and treatment

Living Room

4-12 Buckley Street, Footscray

7-9 Hosier Lane, Melbourne Contact: (03) 9945 2100

Contact: (02) 6056 3366

North Richmond Community Health

Fax: (02) 6056 3466

Dr John Furler Weekly visiting Hep C Nurse 23 Lennox Street, Richmond Contact: (03) 9418 9800

Contact: (03) 9362 8100 www.wrhc.com.au/Services_HEALTH.html Inner Space Primary health care and needle syringe program Hepatitis C information, support and treatment.

4 Johnson Street, Collingwood

Nunawading Clinic

Contact: (03) 9468 2800

176 Springvale Road, Nunawading

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

Dr David Ross GP s100 prescriber for HCV and Opiate Replacement Program Contact: (03) 9878 9191

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Contacts Living Room Primary health care and needle syringe program Hepatitis C information, support and treatment services 7-9 Hosier Lane (off Flinders Lane), Melbourne Contact: (03) 9662 4488 www.youthprojects.org.au

Related Health Services

Regional services

Penington Institute - formerly ANEX

These contacts are able to provide

(Association for Needle Exchanges)

information about local viral hepatitis

95 Drummond Street, Carlton

related services.

Contact: (03) 9650 0699

Ballarat Community Health

Harm Reduction Victoria (HRV)

Kirsty Simpson

128 Peel Street, North Melbourne

Contact: (03) 5338 4572

Contact: (03) 9329 1500

Barwon - Surf Coast Health Service

South East Alcohol and Drug Service (Forster Street) Primary health care and needle syringe program Level 2, 229 Thomas Street, Dandenong Contact: (03) 8792 2330

Haemophilia Foundation Victoria, 13 Keith Street, Hampton East Contact: (03) 9555 7595 Email: info@hfv.org.au

Contact: 03) 4215 7850

Hepatitis Australia Web forum for professionals in the hepatitis C sector. www.hepatitisaustralia.com/ forum/publicaccess/

Catina Eyres

Turning Point 54-62 Gertrude Street, Fitzroy Contact: (03) 8413 8413 Email: info@turningpoint.org.au Web: www.turningpoint.org.au

Indigenous Health Ngwala Willumbong Co-op Limited 93 Wellington Street, St Kilda Indigenous drug and alcohol service Contact: (03) 9510 3233 Email: reception@ngwala.org VACCHO (Victorian Aboriginal Community Controlled Health Organisation) 17 - 23 Sackville Street, Collingwood Contact: (03) 9411 9411 Email: wendyb@vaccho.com.au Web: www.vaccho.org.au Victorian Aboriginal Health Service 186 Nicholson Street, Fitzroy Contact: (03) 9419 3000

Sexual Health Melbourne Sexual Health Centre 580 Swanston Street, Melbourne Contact: (03) 9341 6200 Free call: 1800 032 017 Multicultural Health and  Support Service, HIV, hepatitis C and sexually transmissible infections 23 Lennox Street, Richmond Contact: (03) 9418 9929 Go to: www.ceh.org.au/mhss.aspx

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HIV/Hepatitis/STI Education and Resource Centre at the Alfred Moubray Street, Prahran Statewide resource centre on HIV/AIDS, Hepatitis and Sexually Transmissible Infections Contact: (03) 9076 6993 Web: www.alfredhealth.org.au

Barwon Health Drug and Alcohol Services Contact: (03) 4215 8700 Bendigo Health Contact: (03) 5454 6000 Camperdown Hepatitis C Support worker Jo Sloetjes Contact: (03) 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

Multilingual Hepatitis C Resources

Transmitted Infections

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

Contact: (03) 5443 8355

Health Services Commissioner 30th Floor, 570 Bourke Street, Melbourne Freecall: 1800 136 066 Email: hsc@health.vic.gov.au

Jigsaw Youth Health Service

Victorian Equal Opportunity and Human Rights Commission Information on state and federal equal opportunity laws and programs Level 3, 204 Lygon Street, Carlton Contact: 1300 891 848 Email: information@veohrc.vic.gov.au Web: www.humanrightscommission .vic.gov.au

Latrobe - Mobile Drug Safety Worker

Victorian Viral Hepatitis Educator Training for Doctors, Nurses and other health professionals Contact: (03) 9288 3586

Contact: 1800 242 696

0407 865 140

Contact: (03) 5521 0350

Email: can@can.org.au Web: www.can.org.au (Barwon Health Geelong) Rochelle Hamilton Contact: 1300 094 187 Helen Warner 0438 128 919 Mildura - Sunraysia Community Health Anne Watts Contact: (03) 5022 5444 Email: schs@schs.com.au Moe Community Health Centre Portland - Glenelg Southern Grampians Drug Treatment Service Bev McIlroy

Contacts Shepparton Community Health Contact: (03) 5823 3200 Wangaratta - Ovens and King Community Health Centre Diane Hourigan Contact: (03) 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.

Contact: 1300 009 723 Wimmera (East) Region (Birchip, Wycheproof, St Arnaud) Phil Blackwood (Naturopath/Psychologist) 0403 625 526 Wodonga Community Health Jenny Horan/Anita Contact: (02) 6022 8888 Yarra Valley Community Health Service Healesville Shop 2, 297 Maroondah Highway, Healesville.

Once per month clinic GP referral – can be faxed to Dept of Hepatology, Eastern Health Contact: 1300 130 381 Yarrawonga Community Health Cherie McQualter Whyte Contact: (03) 5743 8111

What is Hep Connect?

Hep Connect 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 and can be accessed by calling the Hepatitis Infoline

1800 703 003 (free call)

Hep Connect aims to:

•

Assist people living with hepatitis C

•

Assist people’s decision making process around treatment

•

Enhance people’s capacity to cope with treatment

•

Assist people to manage living with cirrhosis

•

Reduce isolation and increase overall hepatitis C support.

GET THE REAL STORY! FOR YOUR NEXT EVENT!

BOOK A SPEAKER

The Hepatitis Victoria Public Speakers Bureau is a highly dedicated group of people affected by hepatitis B and hepatitis C who seek to educate the wider community on the issue of living with viral hepatitis by sharing their personal stories.

Our speakers are the human face of viral hepatitis and help to reduce fear, myths, stigma and discrimination. Speakers will tell their personal story around viral hepatitis and how it has impacted on their life. Common discussions around viral hepatitis include:

• Experiences with diagnosis and treatment • Experiences with the health sector and/or health care professionals • Community attitudes, stigma and discrimination • Disclosure • Being healthy with viral hepatitis.

HOW TO BOOK A SPEAKER Bookings are open to all community groups, not-­for-­profit agencies, commercial and organised training or conferences.

To discuss bookings or for more information contact: Marina Mazza Community Participation Project Officer on 9385 9106 or: marina@hepvic.org.au

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Hepatitis Infoline Call the Hepatitis Infoline to talk about: 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.

Hours Monday to Friday 9.00am – 5.00pm

1800 703 003 Your donations make a difference!

Y

our donations help us to provide information, services, advocacy, resources and support for people affected by viral hepatitis, health profess­ionals and members of the general

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

If you do not receive your receipt promptly, then please call Hepatitis Victoria on 03 9380 4644, or email: admin@hepvic.org.au

I would like to donate the following amount:

Please send my receipt to:

$20

$50

$100

$_____ (Your choice)

I have enclosed my cheque/money order/cash or Please debit my credit card for $______

Name

Address

Type of card: Visa/MasterCard Suburb/City Name on Card Card number:

Postcode State Send to: Hepatitis Victoria

Expiry Date

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Suite 5, 200 Sydney Road

Brunswick, Victoria 3056