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Good LiverDecember 2014

The Magazine of Hepatitis Victoria

Raising awareness about viral hepatitis

• Community Advocates • Multicultural media • Educating Vietnamese communities • Festival and events•Yarning about hepatitis C

Incidence, awareness and action on hepatitis BDr. Chris Leung, Gastroenterologist, reports on what needs to be done in Aboriginal and Torres Strait Islander communities to tackle hepatitis B.

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All we want for 2015...

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Melanie EagleCEOTelephone: 9385 9102melanie@hepvic.org.au

Garry IrvingPrograms and Operations ManagerTelephone: 9385 9109garryi@hepvic.org.au

Damian SaltOffice CoodinatorTelephone: 9380 4644admin@hepvic.org.au

Judi BrewsterHealth Promotion OfficerTelephone: 9385 9111judi@hepvic.org.au

Zoe PeckDevelopment CoordinatorTelephone: 9385 9105zoe@hepvic.org.au

Marg SutherlandHealth Promotion OfficerTelephone: 9385 9103marg@hepvic.org.au

Melissa WrightHealth Promotion OfficerTelephone: 9385 9104melissa@hepvic.org.au

Shinen WongHealth Promotion OfficerTelephone: 9385 9108shinen@hepvic.org.au

Garry SattellCommunity Support Services CoordinatorTelephone: 9385 9110garry@hepvic.org.au

Marina MazzaCommunity Participation Project Officer Telephone: 9385 9106 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 responseYour comments or experiences in regard to any articles in Good Liver are welcome. Email: admin@hepvic.org.au

Contact and postal address:

Hepatitis VictoriaSuite 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

HepatitisInfoline1800 703 003

3 Communiqué

From the desk of the

Chief Executive Officer

4 De-livering the news

6 All we want for 2015... We ask the people involved

10 The push for change

13 Julie Sheils The stigma has to stop

14 Quarterly wrap-up Events and training

15 Finding hepatitis C in high-risk population How New York City did it

16 New Hep Hero Jules Cassidy

17 Capturing impact

18 Prison Peer Education Advocating for access to new hepatitis C treatments

19 Spotlight on innovative youth Your mob, my mob, our mob.

20 Liver clinics

21 Contacts

ContentsStaff

Graphic Design: Swivel Design 0435 733 206

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Communique From the desk of the Chief Executive Officer

So what do we wish for in 2015?

I could talk to you about technological

advances. (And yes we do want a

vaccination for hepatitis C and a cure for

hepatitis B).

I could talk to you about systems changes.

(And yes we do want easier to navigate

pathways of care so individuals, their carers,

and health service providers understand what

to do when and where to go next).

I could talk about resources. (And yes we

need an end to the inequities and instead have

this condition that affects 2% of the population

properly funded – across research, prevention,

treatment, support and awareness raising).

I could even talk about ending hepatitis. (And

while it would take more than a year, if we put

the right actions in place now we could in time

prevent transmission, treat early and ultimately

end hepatitis).

But what is it I really want?I want to be drowned out by the loud – even

raucous – voices of people who themselves

are affected by hepatitis.

I want to hear people clearly telling those who

should know that the legitimate needs and

rights of those with viral hepatitis are not

being met.

And I want to hear them saying this often and

loudly.

I want to see them (you/us together) in the

street. I want to see them knocking on the door

of politicians. I want to see them going viral on

social media.

So that is what I really want for 2015.

How will we get to this position –

acknowledging that Santa is probably not

packaging viral-hepatitis-self-mobilisation-

magic on his sleigh just at the moment?

Here at Hepatitis Victoria we can do some

of the ground work. We can run campaigns

and create advocacy opportunities. We can

train people and back them up with media

releases and online petitions. We can support

our heroes and show them to the world.

We can support those who speak publicly.

We can gather the irrefutable facts and

convincing data. We can be there when it

gets tough and encourage the next step.

We can show there is strength in numbers

and sharing experiences. But we can’t

do it alone.

We can put in train a range of different things

that hopefully empower others. But we don’t

ultimately have the power.

The power lies in the people.

We need the experts, those with the personal

experience, to come forward and participate.

And for some this might mean casting off

fear. Disowning stigma and saying I will not

let it determine my actions or diminish my

The voices of people personally affected by viral hepatitis need to be heard. To do this we need to collectively mobilise. We need to support each other to be loud and demanding – to disown stigma and instead say here we are. We will not let you to continue to ignore us. It is time you listened to us an acted.

rights. I will not let my voice be silenced. It is

time I was heard. I will no longer be ignored.

So in 2015 let’s do it together: researchers,

clinicians, health workers, advocates,

we here at Hepatitis Victoria, and most

importantly the people affected. Let’s get

mobilized. Let’s demand change.

Let’s be loud!

Melanie EagleCEO

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Funding uncertainty

Hepatitis Australia CEO, Helen Tyrell, has advised that HA, along

with all of the other Peak National Community Organisations (Scarlet

Alliance AFAO, NAPWA, and AIVL) has faced significant future funding

uncertainty twice this year. Their funding agreements with the Federal

government expired on 30 June and an extension was provided at the

very last minute for six months to the end of December.

As Christmas approaches, none of the Peak National Organisations

for the community response to BBVs and STIs have any indication

what, if any, arrangements will be put in place prior to the cessation

of current funding agreements on 31 December 2014.

Hepatitis Australia is grateful for the significant support from the

State and Territory organisations that comprise Hepatitis Australia

(including Hepatitis Victoria) and partner organisations as they try

to resolve this significant threat to the ‘partnership’ approach to

BBVs and STIs in Australia.

New treatments, medical advancementsNew technique increases chances for liver transplant rate.

The Sydney Morning Herald recently reported on a new technique that

assesses the health of livers donated for transplant, which could boost

De-livering the news

the number of successful transplants, and reduce the number

of viable donor livers discarded.

The technique involves injecting a fluorescent dye into the

bloodstream of brain-dead donor patients while their heart is still

beating. Only the liver can clear the specially designed dye. The

amount of dye remaining in the blood indicates the health and

function of the donor’s liver: a lot of dye in the blood means the liver

is performing poorly.

A pilot study of 20 donors had promising results, with the dye picking

up livers of poor quality that would have passed the current test.

The test has also been able to identify adequate function in donated

livers that would otherwise not have been used.

To read the full article go to: http://www.smh.com.au/technology/

sci-tech/new-test-to-boost-liver-transplant-success-rate-reduce-

waiting-list-20141017-116ji1.html

Eat yourself happy

According to a recent article in The Australian, the secret to

happiness could be as simple as your daily food and drink. Eating

the right things can prime the brain to remain positive and even ward

off depression. The article says a study led by scientists from Kings

College, London, confirmed that omega-3 fatty acids found in oily

fish can help prevent depression. The study suggested that a short

course (two weeks) of a nutritional supplement containing one such

omega-3 polyunsaturated fatty acid (EPA) reduced the rates of new-

onset depression to 10 per cent in a group of patients with hepatitis

C, which is known to trigger depression in 30 per cent of sufferers.

To read the full article go to: http://www.theaustralian.com.au/news/

world/eat-yourself-happy/story-fnb64oi6-1227115088066

Annual Liver Meeting – U.S.The American Association for the Study of Liver Diseases (AASALD)

held it’s annual Liver Meeting in Boston from 7-11 November. The

Liver Meeting® is the premier Annual Meeting in the science and

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practice of hepatology, including the latest findings on new drugs,

novel treatments, and the results from pilot and multicenter studies.

Approximately 10 percent of Americans have some form of liver

disease, but fortunately, the research community has made great

strides in recent years in developing new treatments for patients.

At this year’s meeting, 2106 abstracts addressing these issues were

presented, including 246 abstracts presented in oral sessions.

New HCV drugs pass muster in real worldMedPage Today has reported that studies presented at AASALD

annual meeting indicate that “real world data” shows cure rates of

some of the direct-acting agents against HCV are comparable to

rates reported in clinical trials.

To read more go to: http://www.medpagetoday.com/

MeetingCoverage/AASLD/48495

Success in first human trials of hepatitis C vaccineAccording to a report in Healthline News a Phase 1 clinical trial for a

new hepatitis C vaccine that has shown to be safe in humans shows

promise. To read more go to: http://www.healthline.com/health-news/

success-in-first-human-trial-hepatitis-c-vaccine-110914#1

Check out Healthline’s item on The Famous Faces of Hepatitis C:

http://www.healthline.com/health-slideshow/hepatitis-c-

famous-faces#11

In the UK

BBC Scotland recently reported that the NHS in Scotland could be

reimbursed for the cost of a new hepatitis drug if sufferers fail to clear

the virus. The proposal was revealed after the drug Olysio (otherwise

known as simprevir) was cleared for use by the Scottish Medicines

Consortium (SMC). The manufacturer of the drug claims the move

would help cut prescribing costs. The scheme would come into effect

if patients treated with the drug do not become clear of HCV after 12

weeks. The drug’s manufacturer will pay for pre-treatment blood tests

for patients to predict the drugs effectiveness before treatment

is initiated.

To read more go to: http://www.bbc.com/news/uk-scotland-29569242

CanadaAt the first International Meeting on Hepatitis Cure & Eradication in

Toronto on 5 and 6 November, a statement known as the Toronto

Declaration was released. The Declaration calls for co-ordinated

action and sets out a range of strategies to control and eliminate

viral hepatitis globally. It has been endorsed by organisations

from Canada, Australia, the Netherlands, China, Italy, USA, UK

and Germany.

To read more go to: http://www.infectiousdiseasesonline.com/event/

workshop/1st-hepatitis-cure-eradication/toronto-declaration/

Taking it to the streets…

Street Shot 2014 is going on the road and will be hitting Sunshine and Shepparton.

On 11 December, Hepatitis Victoria will be partnering with headspace (sic) Sunshine and Brimbank Council to conduct an exhibition launch event (at the Visy Cares Hub, 180 Harvester Road, Sunshine) which will feature a BBQ, music and some surprise guests. The exhibition will continue until February.

In the New Year, courtesy of a grant from the FRRR McEwen Foundation and in partnership with Goulburn Ovens Institute of TAFE, we will be taking the Street Shot photos to Shepparton.

Watch our Facebook page for further details about these events.

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Joel Murray

Hep Hero

I would like to see new non-interferon based

treatments made available for patients who

have failed or are not suitable for interferon

treatments.

What I wish for, like all of us sufferers and

recovered people, is that the new more

efficient drugs (with hardly any side effects)

to treat hepatitis are permitted to be on the

PBS. I did triple treatment and the side

effects were (and some still are with me four

months after completion) brutal! I think it

worked though. Final test in January. Also,

I wish that all those with hepatitis have the

motivation to front up for treatment and

support! I also wish for the Hepatitis Vic

support group to stay as a daytime group,

not evenings, as I travel quite a long way to

get to them (Creswick). Blessings to all and

Happy Xmas.

Kate Bindu

Community Member

What I would like to see in 2015 is the

perception of having viral hepatitis as a

stigma changed. That people be assured that

viral hepatitis is treatable and for GPs to refer

patients with hepatitis to Hepatitis Victoria

for assistance and support. I would also

like to see more educational and information

sessions on this topic being conducted in

multiple languages to include people from

non-English speaking backgrounds.

Marion Lau

Hep Hero, Victorian Multicultural Commission

Hepatitis Victoria sought the opinions of many of the people who contribute to our work, what they wanted in the world of hepatitis in 2015. This is what they said…

All we want for 2015...

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Jen Anderson

Community Advocate

What I would like to see in 2015 is for

Victorian government to show real

commitment to tackling the issues around

Hepatitis. We need government to

understand the seriousness of the problem

that we have on our hands, and to act, by

committing to Hepatitis Victoria’s Framework

for Action – it’s a good plan!

Ben Cowie

Hep Hero and Epidemiologist

A commitment from the Victorian Government

to implementing an evidence-based and

appropriately funded program to address

the needs of the 55,000 Victorians living with

chronic hepatitis B. Together, let us make

2014 the last year in which the increasing

numbers of Victorian deaths due to hepatitis

B were met with excuses and inaction.

All I want for 2015… is for countries,

governments, industries and civil societies

across the globe to invest in the prevention

of hepatitis. To think hard about how can we

avoid unnecessary suffering and death by

being a bit bolder, smarter and braver.

Professor Rob Moodie

Hep Hero, Melbourne School of Population and Global Heath

Nellie Montague

Volunteer

All I want for 2015 is for more people to know

the realities of viral hepatitis and how to

avoid it.

The two things I would most like to see in

2015 are pretty predictable:

1. The new hep C drugs listed on the PBS.

2. State government action to make viral

hepatitis testing much more accessible

- cheaper tests and more providers

encouraged to test.

Ross Williams

Community Advocate

My wish would be an increase in the provision of sterile injecting equipment in Victoria. This is based on the Australian evaluation of the cost effectiveness of NSP in the 2009 Return on Investment Report released by the Federal Government. This report highlights the health, social and financial benefits associated with preventing blood borne virus transmission by supporting NSP. If patient/client costs and productivity gains and losses are included in the analysis, then the net present value of NSPs is $5.85 billion; that is, for every one dollar invested in NSPs, $27 is returned in cost savings.

Victoria still does not have any vending machines, provision of sterile equipment in custodial settings and people from Indigenous backgrounds and young people continue to experience a range of barriers to accessing sterile equipment. More needs to be done as a way to prevent the transmission of

new infections.

Emily Lenton

BBV Program Co-ordinator

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All we want for 2015...

That the Australian Government provides

access to new generation hepatitis C

treatments to avoid the catastrophe of

unnecessary ill-health and death. That we

can move towards a grown-up conversation

(without prohibitionist hysteria) with the

community, media and politicians about the

tremendous work done by harm reduction

services and people who use drugs in

protecting the health of our community.

Professor Carla Treloar

Hep Hero

I was diagnosed with hepatitis C when I

was 46. I found the diagnosis devastating.

With a history of anxiety and depression the

current form of treatment was not an option

for me. I knew very little about the virus and

threw myself into the world of hepatitis C

through volunteering with Hepatitis Victoria.

The experience of meeting people with

similar backgrounds and life experience was

inspiring and the depression and feelings of

isolation began to diminish. I have learnt a lot

and I am positive that with the hard work of

Community Advocates and Hep Heroes who

are out and about raising awareness that the

new treatments with fewer if any side effects,

will become available to us in 2015 or not too

far in the future. In the meantime I encourage

more people with the virus along with your

family and friends to get involved, meet some

great people and be a part of something that

will make a difference to so many.

Damian Salt

Community Advocate

At a community level:

• a government strategy that ensures that

the dedication, commitment, work and

energy of people working in hepatitis B

and hepatitis C is focused, supported

and efficient

Jack Wallace

Hep Hero and Researcher

Dr. Lester Mascarenhas

GP (Refugee Health)

I would like a system that facilitates referrals

within primary care. A GP with limited

exposure to hepatitis B management should

be able to refer to a GP experienced in

managing hepatitis B, thus freeing up tertiary

centre appointments for complex cases.

I would love to see the new treatments for hepatitis C be made available for all those affected on the PBS. I would love to see Victoria lead the way so people can access these treatments with a shorter treatment time and a higher clearance rate and with fewer side effects. I don’t want people to have to wait any longer for these treatments. Neither do I want others to have to go through the horrible side effects I went through on the Interferon/Ribavirin treatment. These new treatments need to be made available NOW! I don’t want people to have to wait any longer. Bring in the new treatments in 2015! That hepatitis C can be put out of existence and those that have hepatitis C can access a simple, side effect and interferon free

treatment that gets rid of the virus forever.

Karen Jehn

Community Advocate and volunteer

• funding being provided to support the

development of a community based

response to viral hepatitis

• that communities most affected by

hepatitis are intrinsically involved at all

levels of the response

At a personal level: access to treatments that

work and won’t send me mad.

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For people infected with hepatitis C• A point of care test for hepatitis C

antibody and RNA.

• A point of care test to measure

liver fibrosis.

• An affordable pan-genotypic once a

day tablet that cures hepatitis C in four

to six weeks (or for those who like that

sort of thing – an subcutaneous implant

that does the same thing) and that does

not require any blood tests or further

monitoring (except for the HCV RNA

point of care test I mentioned above that

would be performed 12 weeks after the

end of treatment to show they are cured).

Obviously this treatment is available to

anyone who wants it.

• The effective hepatitis C vaccine I

requested above to be given to everyone

who has had treatment, that wants it to

reduce their reinfection risk

• Infrastructure and funding to ensure this

is able to be provided to all who need it.

• A high quality surveillance system to

measure and monitor the success of the

program.

• A reduction in stigma and discrimination

to people infected with hepatitis C

• That the ‘war on drugs’ is stopped and

we have an evidence based coordinated

supportive response to helping people

who have problematic drug use

For hepatitis B• A community education program to raise

awareness of hepatitis B in key affected

populations in Victoria, in particular in

CALD communities.

• To reduce the risk of people who don’t

have hepatitis B getting infected.

• Better implementation of hepatitis B

vaccine in high-risk populations.

• An education program to reduce

behaviours that put people at risk of

hepatitis B.

• A quality screening/testing program that

provides testing for people at risk of

hepatitis B – preferably oint-of-care.

• Infrastructure and funding to ensure this

is able to be provided to all who need it.

• For friends overseas –universal provision

of birth dose vaccine and a health system/

service that does not reuse medical

equipment and that has high quality

blood screening.

For people infected with hepatitis B• A point-of-care test for hepatitis B to

identify current hepatitis B status.

If I can’t have that immediately just

proper testing.

• A point-of-care test to measure

liver fibrosis.

• In people identified as having chronic

hepatitis B – aclear management plan

including the provision of treatment to

reduce the risk of disease progression.

• In a truly magical world I would have a

drug that provides cure – one day...

• Infrastructure and funding to ensure this

is able to be provided to all who need it.

• As with hepatitis C - a high quality

surveillance system to measure and

monitor the success of the program.

• A reduction in stigma and discrimination

of people at risk of or infected with

hepatitis B..

A litany of wishes:

To reduce the risk of people who don’t have hepatitis C getting infected or those already with hepatitis C getting reinfection/superinfection:

• Increased provision of needles and syringes and opioid substitution therapy

• Education programs to reduce behaviours that put people at risk of hepatitis C

• Annual point of care antibody tests

• An effective hepatitis C vaccine, infrastructure and funding to ensure this is able to be provided to all who need it

• For friends overseas – a health system/service that does not reuse medical equipment and that has high quality blood screening

Margaret Hellard

Hep Hero, Burnett Institute

I would love to see Victoria lead the way so people can access treatments with a shorter treatment time and a higher clearance rate and with fewer side effects. I don’t want people to have to wait any longer for these treatments.

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With viral hepatitis being a significant issue worldwide, we thought it would be good to take a look at what is happening (or what our colleagues are seeking to have happen) around the world in the push for change:On the world stage:

EuropeThe European Initiative on Hepatitis C and Drug Use has petitioned the European Parliament to adopt its policy platform: Manifesto on Hepatitis C and Drug Use. The issues surrounding viral hepatitis, in that region are not dissimilar to ours. As outlined in the Manifesto:

• In spite of European guidelines recommending treatment access, people who use drugs still face considerable barriers to, and are frequently denied, access to the newly approved HCV treatment regimens.

• The scale-up of HCV treatment access to people who inject drugs has the potential to significantly reduce the number of new infections and the prevalence in

the population, acting as an effective preventative measure.

• At present polices responding to HCV are inconsistent, or non-existent across Europe. The broad range of issues pertaining to HCV have not been thoroughly included in European and/or national policies, or comprehensively dealt with among designated stakeholders.

• HCV prevention, screening, early diagnosis, and treatment among people who inject drugs have been proven to be both effective and cost effective.

• Research exploring the values and preferences of people who inject drugs with regards to HCV treatment has found that concerns about side effects; limited HCV knowledge; rationed treatment expectations; experiences of treatment refusal due to drug use; stigma and discrimination within healthcare settings; and difficulties associated with hospital systems pose significant hurdles for HCV treatment, access and uptake.

• Presently, public awareness, surveillance systems, availability of HCV prevention and harm reduction based interventions remain inconsistent throughout Europe. Access to screening and diagnosis services are not available to people who use drugs in every country.

• Importantly there has been little attention to addressing the stigma and discrimination faced by people who use drugs and even higher among people who inject; this is a major barrier to accessing services and requires urgent remedial action if effective HCV policy and programming is to be implemented.

In summary, the Manifesto calls for urgent action to:

• Develop Targeted HCV Strategies and Action Plans: that include appropriate funded multidisciplinary approaches for HCV prevention and control among communities engaged in high-risk behaviours including people who inject drugs, in line with the 2014 WHO resolution WHA67.6 OP1(1).

• Provide Access to HCV Testing, Treatment and Care Services: particularly the

provision of low threshold and community based HCV testing (voluntary, confidential and free of charge) and referral to affordable and high quality treatment (interferon free) and care for HCV. Consensus agreements must be made among pharmaceutical companies and EU member states to reduce prices of new medications to allow the scale-up of treatment, thereby allowing for equitable access to affordable treatments.

• Scale-up Harm Reduction, evidence and Community-Based Programs: ensuring high quality, effective and sustainable coverage. Research has shown that a combination of integrated interventions in low threshold settings such as NSPs, opioid substitution therapy (OST), access to medicalised heroin and community based, peer led harm reduction programs are not only cost effective regarding HCV prevention, but also ensure that marginalised populations stay connected to direly needed services.

• Decriminalize People Who Use Drugs: all EU member states should adopt laws that decriminalize people who use drugs and prosecute human rights violations that threaten access to, or deny, essential life saving services, such as NSP, harm reduction and treatment services.

• Meaningful inclusion of People who Inject Drugs and their organisations: required in all levels of HCV policy development, including the development and provision of harm reduction, HCV prevention, treatment and care services.

• Increase Health and HCV Literacy: development and implementation of standardized training for healthcare workers and for people who use drugs on HCV prevention, treatment updates and drug use issues…lack of sufficient health literacy on hepatitis, negatively influences decisions regarding appropriate prevention and treatment options. Dedicated funding must be allocated for the development of interventions that will improve the knowledge and skill level regarding HCV treatment and drug use/user cultural issues

among healthcare professionals.

The push for change

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AsiaThe Coalition to Eradicate Viral Hepatitis

in Asia Pacific (CEVHAP) is advocating for

public policy reforms that reduce the burden

of viral hepatitis in that region.

Established as a multidisciplinary body,

CEVHAP is the first organisation based in the

Asia Pacific region to dedicate its efforts to

this cause.

CEVHAP’s particular focus is on building

the case for governments to develop their

own national action plans, based on the

framework laid out by the WHO under the

Global Hepatitis Programme.

Jennifer Johnston, Executive Director of

CEVHAP, says that a critical aspect of the

organisation’s advocacy work is to work in

partnership with others who share the same

goals including: governments, NGOs, the

business sector, academic researchers,

civil society and people themselves who

are infected, emphasizing the need to raise

public awareness across at many levels

of society across the globe.

“The lack of understanding and capability

around viral hepatitis is confounding,

particularly when one considers that the

world incidence numbers are so heavily

influenced by the Asian numbers,” she says.

Jennifer points to the fact that over 400

million people are infected with chronic

hepatitis B or hepatitis C and these people

are at high risk of developing liver disease

leading to cirrhosis, liver cancer and

eventually, death.

“Each year around 1.3 million deaths result

from hepatitis infection, yet there are effective

therapies now that can largely prevent these

deaths – if we can get them to those who

need them.”

CEVHAP’s work is focused on 3 key areas of activity:

1. Education and Capacity-Building:

• Initiate educational meetings and conference symposia that provide a platform for cross-border information exchange

• Conduct media and communications campaigns e.g. World Hepatitis Day

• Design and convene policy and advocacy workshops for members and stakeholders

2. Policy Research and Development

• Identify information data gaps and ways to address deficiencies eg. improving disease surveillance systems

• Conduct policy research to inform government policy development eg. Patient Needs Assessments, Policy Survey and Analyses

• Act as a conduit for dissemination of data and information from global research projects

3. Policy Advocacy

• Promote policy frameworks at local, regional and global forums

• Develop partnerships and collaborations and represent the region at local, regional and international policy forums

• Support members’ efforts locally in pushing for policy reform

Some examples of the types of activity CEVHAP has undertaken or has advanced plans to initiate:

• Policy Survey and Assessment

Project – Taiwan

A review and assessment of policies in

Taiwan, benchmarking each against the

WHO framework. Stakeholders were

surveyed on their views of current and

potential future policy infrastructure, where

effort needs to be concentrated, and what

resources need to be boosted to enable

their country to achieve better prevention,

management and treatment outcomes.

This will enable an informed gap analysis to

be developed.

• Greater engagement with local stakeholders to build knowledge base:

Facilitated discussion and collaboration

between regional influencers and specialist

organisations through “Policy Think-Tanks”

in at least two different countries in the next

12 - 18 months where stakeholders will

come together to hear about best practice

initiatives from other parts of the world to

enhance focused consideration of issues

locally and to enable identification of areas

for focus and improvement .

• Build regional momentum of World Hepatitis Day:

World Hepatitis Day (WHD) plays such an

important role in building understanding and

reducing stigma. The momentum of WHD

has increased over the past few years but

CEVHAP is keen to do more to support their

members and stakeholder organisations in

their various WHD activities, to further build

impact and achieve positive outcomes in the

reduction of hepatitis prevalence and death.

• Build commitment to indigenous communities:

Indigenous peoples throughout the world

commonly experience poorer access to

health-care, worse health outcomes, and

are subject to discrimination in mainstream

health services. Rates of liver cancer

directly caused by the hepatitis B virus

are three times higher In the Australian

Indigenous population. Despite this, viral

hepatitis has a low priority in discussions

about Indigenous health.

Continued on page 12

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Until the World Indigenous Peoples’ Conference on Viral Hepatitis (WIPCVH),

held in in Alice Springs in September 2014, on which CEVHAP was a key collaborator and steering committee member, there had not been a forum to highlight this experience at a global level. The central purpose of the meeting was to examine the health burden of viral hepatitis in Indigenous peoples, to share common experiences and innovative solutions and to develop new relationships to enable collective responses into the future.

The next WIPCVH will be held in Brazil in 2017, with an Asia Pacific interim planning seminar during the APASAL forum being held in Japan in 2015.

Australia Pursuing a vaccine to prevent HCV. By Dr Patricia Vietheer and Associate Professor Heidi Drummer, Centre for Biomedical Research, Burnet Institute, Melbourne, Australia.

Why do we need a vaccine? The advent of direct acting antiviral therapy is likely to have an enormous impact on our ability to treat HCV with sustained virological response (SVR) rates of 95% reported, along with reduced treatment times and fewer side effects.

Unfortunately, the reality is that the high cost of these new therapies ($1,000/pill) will restrict their use in developed countries. In the United States, treatment of all eligible people is predicted to add $136 billion USD to healthcare costs over the next five years.

In developing economies, even at reduced cost, direct acting antivirals are unlikely to be widely used for many years, if ever. Furthermore, successful clearance following therapy still leaves people at risk of reinfection if they are exposed to HCV, especially if there remains a large pool of infected people.

A vaccine is urgently needed so that we can stop the spread of HCV, and when used in conjunction with antiviral therapy, provides the opportunity to eradicate HCV.

The challenge Challenging HCV vaccine development is the virus’s ability to rapidly change its genetic

sequence thereby altering its appearance to our immune system. These changes in appearance effectively provide the virus with a cloak so that it escapes immune surveillance.

The genetic diversity of HCV has resulted in its classification into seven distinct genotypes that circulate world-wide. A vaccine must be able to protect against each of these genotypes.

Approximately 30% of people exposed to HCV will spontaneously clear their infection and will not progress to chronicity. This suggests that developing chronic HCV can be prevented if the right type of immune response is produced. The goal of a preventative vaccine is to develop immunity against all genotypes before a person becomes exposed to HCV.

The surface of HCV is coated with two different proteins that allow the virus to attach to our liver cells and initiate infection. These proteins, E1 and E2, are major targets of our immune response and generate antibodies. Antibodies are present in human serum and on the surface of some cells, and function by binding to infectious agents, such as HCV.

The genes that make antibodies also mutate rapidly and so co-evolve with HCV until they are optimised for their ability to bind E1 and E2. Some of these antibodies will have the ability to prevent HCV from invading liver cells. These “neutralizing antibodies” are essential components of both the natural immune response to HCV and vaccines. During natural infection with HCV, the neutralizing antibody response is delayed for almost one year and this delay has been associated with the ability of HCV to establish chronic infection. In addition, the virus has the ability to hide the parts of E1 and E2 that generate antibodies that can bind to more than one HCV genotype.

The vaccineOur laboratory at the Burnet Institute has been successful in developing a lead HCV vaccine candidate. To achieve this, we modified the appearance of the E2 protein such that it is now “uncloaked”, exposing previously hidden areas of the protein to the

immune system. The antibodies generated to this modified form of E2 have the capacity to prevent HCV invading liver cells and effectively block all seven genotypes of HCV infection in experimental systems.

The immune response elicited by our vaccine is fundamentally different to that produced in natural infections. This is a major advance in the development of HCV vaccines.

What’s next? All experimental vaccines must be tested to determine if they are safe and produce the desired immune response in human clinical trials. This is a lengthy, expensive (~1 billion USD) and necessary phase of vaccine development, and it can take up to 10 years before a vaccine is approved for human use. We are planning to conduct a phase I clinical trial in healthy human volunteers to determine safety and examine whether our vaccine, when given to humans, similarly produces antibodies that are neutralizing against all seven genotypes of HCV.

Who to vaccinate? A prophylactic vaccine can be used in many different ways. Perhaps the easiest but most controversial is to add a vaccine to our current hepatitis A and B vaccine given to infants at birth, or to the Human Papillomavirus vaccine given to adolescents. This has the advantage of providing broad coverage but may not be accepted in the first instance in the developed world where the overall incidence of HCV is low. In the developing world, where the incidence of HCV is higher, this may be a more desirable approach.

The second approach is to vaccinate ‘at-risk’ people: those who are HCV negative but engaged in injecting drug use, and health care workers. The third approach that can be used in conjunction to preventative vaccination is to vaccinate those who have received antiviral therapy and eliminated their HCV. This would theoretically prevent the possibility of re-infection and make antiviral therapy more cost effective.

Ultimately, we envisage that antiviral treatment together with a successful vaccination program could eradicate HCV. What we need is vision and funding to make our vaccine a reality!

The push for change

13

The stigma has to stop says the woman

who gave Good Liver its name.

Artist and academic Julie Shiels was one

of the early activists in the Hepatitis C

Foundation, the forerunner to Hepatitis

Victoria – and came up with the name Good

Liver for what was then the Foundation’s

newsletter. Carmel Shute spoke to her about

the good old days, which weren’t so good.

Julie Shiels joined the Hepatitis C Foundation

in 1994, not long after it was started by Joan

Alter whose husband acquired the virus during

a mass vaccination program whilst stationed

in Italy after World War 2. The Foundation’s

main activity was running

a telephone helpline.

“Chris Richards, the head of the Fairfield

Infectious Diseases Hospital, provided us

with a room and some resources and our

ambition was for a 24-hour helpline, all run

by volunteers. It was an impossible task. We

were up against it – no funding and health

services that hadn’t kept up to date with

developments,” Julie said.

“It was just dreadful. Doctors were ill informed

and, for instance, advised women with hep C

not to have children. No one knew anything

with any consistency. I was told, for instance,

to avoid tomatoes. No one understood just

how dangerous blood could be. People with

hep C feared for their jobs. The level of stigma

was high.”

Approaches for funding to the Federal and

Victorian Governments resulted in a lot of

buck-passing – and no bucks. Julie, who had

experience in NGOs and grant writing, then

applied to the Myer Foundation for funding –

and managed to get $13,000 in funding. It was

a game-changer.

“It meant that the Hepatitis C Foundation

could employ a volunteer co-ordinator. He’d

had experience in the AIDs education and

helped us draw up policies, procedures and

protocols. I was chairperson for a short time

and rebranded our newsletter as Good Liver

– a title I’m pleased to see it still has today,”

Julie said.

“The Myer Foundation funding allowed us

to leverage the State Government. I’d got

to know John Carney, the head of public

health in the State Government, and would

ring him every couple of weeks with the

latest outrageous story reported through the

helpline.”

“After the Myer money came through, I told

him it would be really embarrassing if the

poor health information revealed by our huge

database of callers were made public – and

all of a sudden, we got funded. Carney set up

a meeting with me and senior bureaucrats and

we worked on a service agreement.”

Soon after, Shiels moved to Vietnam as her

husband was transferred for work. Nearly two

decades later, she’s still appalled by attitudes

to people with hep C.

“It doesn’t matter how you got hep C – you shouldn’t be discriminated against. The stigma has to stop.”

Julie SheilsThe stigma has to stop

14

Quarterly wrap-up – events and training

Horsham forum goes viralAround 80 health and community workers from the Grampians/Wimmera region took a day out of their busy schedules to attend an all-day forum on viral hepatitis, held in Horsham in early November.

The event featured local and Melbourne based presenters, and covered a wide range of topics relevant to hepatitis B and hepatitis C. The morning presenters gave a comprehensive update on hepatitis B, highlighting the huge challenges associated with addressing this under-recognised, but common public health issue.

Participants were surprised to hear that without appropriate intervention up to 25% of people living with chronic hepatitis B will eventually be diagnosed with liver failure or cancer. With around 1% of the Australian population living with this “silent killer”, it’s time to ensure services are available to test, monitor and treat those at risk.

The afternoon session focused on hepatitis C; a key highlight was the optimism associated with the highly effective Interferon free treatments that we are all hoping will be available in Australia in the next year. The other highlight was hearing from Jules Cassidy, a local person living with hepatitis C (and new Hep Hero, see page 16). Jules talked about her experiences, both positive and negative of living with the virus, in particular the impact of basic kindness and respect shown by health care workers as powerful forces for change and empowerment.

Attendees repeatedly expressed their appreciation for the opportunity to access this forum locally. Melbourne forums are out of

reach for many regional workers due to the

time and expense associated with travel and

overnight stays. The venue was set amongst

the beautiful Horsham Golf Club grounds

which made for a perfect setting for this highly

successful day.

This event was made possible through a grant

from the Victorian Department of Health. The

Forum was organised by Hepatitis Victoria in

collaboration with the Victorian Hepatitis B

Alliance with support from Networking Health

Victoria and regional workers who assisted in

local promotion. Hepatitis Victoria would like

to thank Jen MacLachlan (Victorian Infectious

Diseases Laboratory), Nicole Allard (GP Co

Health), Ben Cowie (VIDRL), Nadia Gavin

(Harm Reduction Victoria), Mohammed

Al-ansari (Ballarat Community Health), Kirsty

Simpson (BCH), Michelle Orr (BCH) and

Jules (Positive Speaker) for their invaluable

contribution to the success of the Horsham

Regional Viral Hepatitis Forum.

Multicultural Women’s ForumHepatitis Victoria recently hosted ‘Translating Hep,’ a multicultural viral hepatitis workforce development seminar. The event was funded through a generous grant by Hepatitis Australia, and was hosted in partnership with the Multicultural Centre for Women’s Health (MCWH), an organisation committed to being a national voice for refugee and immigrant women’s health and wellbeing in Australia.

The seminar began with the clinical aspects of viral hepatitis led by Dr Nicole Allard, a GP at the Joslin Clinic, Cohealth in Western Footscray. Dr Allard’s session was followed by presentations of lived experiences with hepatitis B and hep C by two of our trained public speakers. We then explored the cultural determinants of immigrant and refugee women’s health from a critical feminist perspective with Regina Quiazon, a Senior Research and Policy Advocate from MCWH. The final presentation looked at various social policies and entitlements relevant to viral hepatitis work within multicultural women’s communities. Some examples include:

• the Federal Disability Discrimination Act

• aspects of immigration health checks (information for this presentation was collated from the Victorian Equal Opportunity and Human Rights Commission (VEOHRC) and the Refugee and Immigration Legal Centre (RILC)) that impact on migrants from high prevalence countries

• free testing and hep B vaccinations for particular communities

Horsham Regional Viral Hepatitis Forum, which was held at the beautiful Horsham Golf Club.

‘Translating Hep,’ a multicultural viral hepatitis workforce development seminar.

15

• Medicare-subsidised hep C antibody tests,

• Pharmaceutical Benefits Scheme (PBS) subsidised first course of interferon-based hep C treatments.

Finally we asked participants to consider how we can improve intake, assessment, and referral, as well as devise new strategies for integrative organisational partnerships to reduce the burden of viral hepatitis on women from immigrant and refugee communities.

The event demonstrated how the combined experience and expertise of a range of individuals and organisations can be integrated – such as clinical and biomedical research, personal stories of lived experiences with hepatitis B and C, expertise in culturally specific studies and strategies, and explorations of public health and social policy - to provide training that benefits a broad range of attendees, in this instance refugee advocates, multicultural and bilingual health workers, viral hepatitis workers, health interpreters and members of affected communities.

We look forward to further partnership approaches into the future to help manage the diverse social and cultural determinants of hepatitis prevention, transmission, treatment and chronic disease management.

Hepatitis Victoria hopes to reach out to new communities and build new and exciting collaborations in 2015.

Training in 2015Shed3 (in conjunction with Networking Health Victoria, ASHM and The Alfred) is running a Hepatitis B Advanced Management in Primary Care (s100) course on Wednesday 18 and Sunday 22 February 2015. Course participants will engage in a detailed overview of hepatitis B infection and its management, including risk assessment, diagnosis, co-morbidities, suitability and preparation for treatment and monitoring during treatment. Medical practitioners successfully completing this course and associated activities may be able to prescribe s100 antiviral therapy for hepatitis B under shared care arrangements.

For further information: Email: j.brock@nhv.org.au, or to register go to: www.cvent.com/84q622/4W

I t is estimated that 2.4 % of New York City (NYC) residents have hepatitis C (HCV)

infection, but half do not know their status. To address this gap, the NYC Department of Health and Mental Hygiene launched the Check Hep C Program, which, in its first year, helped increase the rate of complete HCV diagnostic testing among at risk populations and has successfully linked more people to HCV supportive services, care, and treatment.

The Check Hep C Program involved eight organizations at 12 community sites, including syringe exchange programs and community health centres. Over 4,500 people were screened and tested, and of those who tested HCV RNA positive, 85% attended their first medical appointment and 50% remained in care, which put them in the position to benefit from the HCV treatment advances of 2014.

In describing the Check Hep C program, Mary Ford, MS, program evaluator for the program said, “The screening protocol for the Check Hep C program includes testing those in the birth cohort as well as those who are at high risk from injection drug use either currently or in the past.”

After the Centre for Disease Control and Prevention (CDC) recommended a one-time screening for HCV infection for all Americans born from 1945 to 1965 (baby boomers), New York State passed a law mandating that health care providers offer a HCV test to individuals in this age group, and provide care, or linkage to care, for those who test positive. However, many people at high risk for HCV were not visiting a health care provider to get tested or screened.

According to Ms. Ford, “While a formal evaluation of the mandate has not been completed as of yet, we have collected anecdotal evidence from many of our partners and from providers that we have met with during the year, finding that adherence varies

widely -- lack of knowledge by primary care providers, lack of accountability by leadership, lack of adequate resources for testing, lack of integration between service delivery locations, etc.”

In order to increase screening in groups at highest risk for HCV, the Program generated awareness about HCV and recruited patients through a local media campaign and targeted outreach. The program improved rates of complete diagnosis through field-based rapid testing, and confirmation (RNA testing) immediately after HCV antibody positive tests.

In the Check Hep C program population, the estimated prevalence of HCV infection was 14%, and 9% among persons born after 1965 and 14% among baby boomers. Among enrollees, 25% had injected drugs in the past (20 times more likely to have HCV infection), 15% were homeless (1.6 times more likely to have HCV infection), and 18% had been previously incarcerated (five times more likely to have HCV infection). In addition to supporting the birth cohort based screening recommendation of the CDC, the authors of the article recommend expanding the Check Hep C model to settings with high-risk populations.

“Further outreach and education to primary care providers will be needed to fully implement the testing mandate, and programs like Check Hep C will play an integral role this process in high-risk communities, said Ms. Ford. “The successful model demonstrated in Check Hep C can be replicated not only in community-based organizations, but also in community health centres, and outpatient clinics of large medical centres.”

(from the AASALD Press Room)

Note by Hepatitis Victoria: we are keeping our fingers crossed that a rapid testing pilot for hepatitis C in Melbourne’s west will be realised in 2015…

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Finding hepatitis C in high-risk populations:

How New York City did it

16

extensive periods of living without drugs or minimal use. I studied, trained and became active in peer-based education and community work. I was very proud and challenged in a positive way to become employed in places where progressive and preventative health measures such as the supply of syringes, and other strategies were part of the service delivery.

I was diagnosed with ‘non A non B hepatitis’ in the late 1980’s (before it was renamed as hepatitis C), and although I was working ‘in the industry’ it was striking the minimal information that was available around hepatitis C.

I consider myself incredibly lucky as over the years I have been both included and supported in decisions regarding to my diagnosis by my family and many health workers, even though hepatitis C has notably impacted on my life, changing my energy levels and ability to work, and worsening my depression and mental health, all of which made me an ‘inappropriate’ candidate for current treatment options.

New Hep HeroJules Cassidy

I am a Hep Hero because I want to stop discrimination against people

with hepatitis. And although Hero is not a word I associate myself with, throughout my life I have been blessed with many heroes: doctors, nurses, friends, family and associations including ‘Hepatitis NSW, VIC and Australia’ who made it possible to be where I am right now.

I have lived with hepatitis C for approximately 32 years - I became infected with hepatitis B (which I fortunately cleared) and C when I commenced ‘using’ drugs intravenously - most specifically speed and heroin - in the early 1980’s. New syringes were incredibly difficult to buy in this period and it was also a legal offence to ‘have syringes on your person’; thus syringes were hidden and shared over and over, for which we had to frequently sharpened them and used to wash the whole instrument in hot water - sometimes including soap – in an attempt to keep the syringe ‘clean’.

I continued to use drugs intravenously for many years – whilst also experiencing

Nevertheless, I am aware of the level of stigma and discrimination associated with hepatitis C. As little as 2 years ago, I suffered enormous (and devastating at the time) discrimination from both, residential workers and clients in a woman’s housing where I was residing due to both being homeless and in a state of crisis as a consequence of my mental health during that period.

Ignorance, lack of education and lack of wanting to address stigma and discrimination forced me to leave the service after having experienced hellish bullying, threats and intimidation from the clients as well as indifference and apathy from the staff. Again, I was lucky and eventually had options in relation to safe housing. So many do not and so many are not free from discrimination.

I have enjoyed thus far a complex life and hepatitis C is part of that life. I am extremely fortunate in the fact my life and health has been immensely enhanced in relation to hepatitis C as I have been able to access information and support as well as ‘complimentary’ medicines (and traditional ones through the P.B.S., which have been greatly beneficial.

I am honoured to have worked as a volunteer addressing my experience of living with hepatitis C for ‘Hepatitis NSW’ for over ten years – and am now equally privileged to begin in a similar position at ‘Hepatitis Victoria’, helping to raise awareness around viral hepatitis.

My primary message in relation to ‘visibly’ living with hepatitis C is that, regardless of how one transmits the virus or one’s lifestyle, universal access to support, treatment, resources and referrals should be available without discrimination or harm of any sort to that person. The virus can be very debilitating and no one needs further obstacles to clutter their path and their life. Education, kindness and generosity should guide how we (as individuals and society) address these type of issues.

Jules CassidyHep Hero

Regardless of how one transmits the virus or one’s lifestyle, universal access to support, treatment, resources and referrals should be available without discrimination or harm of any sort to that person.

17

As a small, not-for-profit organization, Hepatitis Victoria is constantly seeking funding to undertake much-needed education and support projects. We are not alone.

There are over 600,000 community organisations in Australia (2010 estimate, Australian Productivity Commission).

Whilst this reflects our commitment to community well being, it also means that many organisations remain small, underfunded, and are often unable to achieve clear outcomes for the communities they represent.

In 2015 the competitive nature of funding in the so-called ‘third’ sector will inevitably increase, and it is imperative that we present clearly researched and appropriately structured projects for consideration by our donors and key stakeholders.

Our strategies should take into account sector learnings, previous models of success, and most importantly, be developed in consultation with the communities they ultimately affect. It is also important that projects match with the organisation’s overall mission, and link in with collaborative organisations seeking to achieve similar outcomes for the community.

In my experience, when looking to invest in a project, potential donors generally ask three key questions:

1. Why does the project need to be done?

Has the project been done before? Why is it unique? Has the community that will be directly affected by the proposed project been consulted during its planning?

2. Who will the project benefit?

What is your target group? What factors regarding this particular group make them more vulnerable?

And number three: the most complicated question of all.

3. How will the project work towards achieving impact, and how will this impact be measured?

What strategies and activities will you use to achieve your overall goal? How will

you show that your strategy has been

successful?

In the end, the community sector’s

‘’product’’ is the impact we are able to

achieve for the communities we serve.

Impact is the end result – impact is what

donors are looking to invest in. As well as

change, and how we measure it.

The nature of our work is that our product

- impact - cannot be captured, bottled

and sold. It is up to us to find new and

innovative ways of capturing impact. By

doing so, we can show that our strategies

are effective. We can show that donors can

trust us to take their hard earned dollars

and create lasting change.

As supporters, members and interested

parties I hope you will agree that the

impact Hepatitis Victoria is having is

becoming more visible: our Hepatitis

Heroes project has helped raise

awareness and decrease the stigma

associated with viral hepatitis, showing

that the disease can affect people from

all walks of life.

Our range of culturally appropriate,

sensitive and targeted educational

resources and activities have reached

individuals that may never have heard of

viral hepatitis and brought the issue to

their attention. We can see the increase

in confidence and emotional wellbeing of

support group members as they begin to

meet other like-minded individuals who are

experiencing the same issues they are.

In the year to come we will continue to

search for new and innovate ways of

capturing impact. And we implore you

to continue to support us in our quest to

do so.

Zoe Peck Development Coordinator

Hepatitis Victoria

Capturing Impact

18

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People in custody experience higher risk

for and rates of hepatitis C. Hepatitis

Victoria has undertaken prison specific

work since 2001 in recognition. According

to the Australian Bureau of Statistics, crude

imprisonment rates in Victoria increased to

120 per 100, 000 in 2013 (from 112 in 2012).

Increasing numbers of people in custody

make this an important risk factor for viral

hepatitis.

Prison is a complex setting, which requires

unique, environment-specific solutions to

issues, which impact upon the lives of people

in custody each day. One very important

strategy for addressing many issues

experienced by people in custodial settings

is supporting people in custody to provide

factual information to others. This is called

Peer Education.

Peer educators are trained and supported

by several organizations within the justice

system to undertake a variety of roles. The

importance of Peer Educators is formally

acknowledged in the framework for action

against communicable diseases used

by Justice Health 2012 – 2014. They are

explicitly identified as an initiative to reduce

transmission of BBV and STI in prison.

They contribute too many other important

health promoting actions available against

communicable diseases in custody.

Hepatitis Victoria has been working with Peer

Educators in custodial settings since 2003.

In 2011 the Hep C training manual for Prison

Peer Educators was launched. This resource

is unique in that it is written by a prisoner

for prisoners. Hepatitis Victoria works with

Peer Educators to provide extensive training

relating to the specific risks for viral hepatitis,

which are unique to custody.

Peer educators understand the nuances

of the custodial environment. They can

understand problems and experiences

of people in custody and may be able

to offer real solutions, which are context

specific. Information can be tailored by peer

educators, to be relevant to each setting and

therefore highly individualised messages

of harm minimisation. They bring their own

unique knowledge and experience to the

work they do, they are accessible when

other organisations may not be and they

can access those at highest risk of blood

borne virus when other health promotion

activities may be unsuccessful. They can

collaborate with services within custody to

promote services available to inmates, clarify

information or ask questions on behalf of

their peers.

In some settings peer educators are able

to contribute to general programs. They

may participate in pre-release programs to

reiterate heightened risk of viral hepatitis

associated with custodial settings. They may

be present at reception to identify themselves

as a contact for information and prevention to

new entrants. As new treatments for hepatitis

C become available in the future, the role

of peer educators in the provision

of accurate and up to date information to

people in custodial settings is essential.

Recent training to induct peer educators was

facilitated by an experienced peer educator.

Further illustrating the potential possibilities

for those undertaking the training.

Hepatitis Victoria recognises the many

benefits of activities undertaken by peer

educators and supports innovative ideas and

programs in which they are able to expand

their role in assisting a population who has

an increased risk of viral hepatitis and who

are difficult for many services standard to

the community to access.

But we also recognize that more is needed

in this area:

• greater access to treatment while in

prison, particularly new hepatitis C

treatments so that people can be cured

whilst in a stable situation. Hepatitis

Victoria congratulates the latest group

of peer educators to complete training.

• Implementing programs to help prevent

the transmission of hepatitis within

prisons, such as access to safe injecting

equipment, as is the case in at least 10

other countries in the world, and recently

committed to in the Australian

Capital Territory.

Melissa Wright Health Promotion Officer

Prison peer educationP

ic: Participants in T

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eer Education P

roject

Peer Educators provide extensive training relating to specific risks for viral hepatitis

19

Spotlight on innovative youth

Isiaha Ramsay with the mural that he

helped create with fellow classmates at

Forbes High School

Your Mob, My Mob, Our Mob: a hepatitis C peer education project.

This pilot program was undertaken by the Aboriginal Health and Medical Research Centre (AH&MRC) and Hepatitis NSW from June 2012

to February 2014, to raise awareness and increase knowledge of hepatitis C in Aboriginal communities in NSW.

The program was delivered across eight sites and involved Aboriginal Community Controlled Health Services, NSW Juvenile Justice, Justice Health and a rural high school.

The model involved collaboration and capacity building via staff training. In addition, young Aboriginal people were recruited as peer educators in each community and were provided training in delivering hepatitis C transmission prevention messaging to their peers.

An added component of the project aimed not only to engage the young people but also to sustain the conversation about hepatitis. A professional street artist was engaged in each community to assist the young Aboriginal people to design and create artwork (in the form of wall murals, decorating a health

promotion caravan, and skate parks), which reinforced hepatitis prevention messages. Using street art was particularly valuable in engaging young people in both the juvenile detention centres and community settings.

An internal evaluation of the project found that the project was effective in engaging young Aboriginal people in learning about prevention and management of hepatitis C.

Close planning with staff (AH&MRC, Hep NSW and the street artist) and forming relationships with the program staff in the juvenile justice settings proved to be highly effective in the organisation and delivery of the project.

Delegating roles and responsibilities to locally based workers also helped to give each site their own flavour. For example, one service

organised a community event, which included a jumping castle, face painting and other activities to launch the murals. Another service invited the town Mayor to speak at the launch of their mural.

The use of street art was highly effective in engaging the young people and facilitating peer education at places where the mural was a permanent fixture, as it repeatedly prompts conversation about hepatitis C. Incorporating a variety of interactive activities to educate young people was also found to be an effective way to communicate health information.

“This project had some great outcomes for some of our partner agencies” relayed Kerry Walker, Project Officer from Hepatitis NSW.

“One community in particular was surprised that they had managed to engage some challenging kids who normally would not get involved in this type of thing.

“A program like this becomes a template for new ways to talk with young Aboriginal people and communities about sensitive topics like hepatitis C”, she said.

“We are planning on running the program again around sexual health,” added Sallie Cairnduff, Public Health Manager for the Aboriginal Health and Medical Research Council of NSW (AH&MRC).

You can find out more information at the following links:https://www.facebook.com/YourMobMyMobOurMob

Compiled with assistance from Kerry Walker (Hepatitis NSW) and Sallie Cairnduff (AH&MRC).

Judi Brewster Health Promotion Officer

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 service 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.

ALBURY Albury Community Health Centre – Hepatitis Clinic596 Smollett Street, Albury Contact: (02) 6058 1800Fax: (02) 6058 1801

BAIRNSDALE Bairnsdale Regional Hospital Bairnsdale Regional Health Service Specialist Consulting Rooms122 Day Street, BairnsdaleContact: (03) 5150 3478Fax: (03) 5150 3404

BALLARATBallarat Base Hospital Drummond Street, BallaratContact: (03) 5320 4211Fax: (03) 5320 4097

BALLARATBallarat Community Health 12 Lilburne Street, LucasContact: (03) 5338 4500Fax: (03) 5332 6617

BENDIGOBendigo HealthCnr Arnold and Lucas Streets, BendigoContact: (03) 5454 8422Fax: (03) 5454 8419

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

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

CRANBOURNECranbourne Integrated Care Centre140-154 Sladen Street, CranbourneContact: (03) 5990 6789Fax: (03) 5990 6328

EAST RINGWOODMaroondah Hospital (Eastern Health)Davey Drive, Ground Floor Outpatients, East RingwoodContact: 1300 342 255Fax: (03) 9871 3202

ELTHAMNorth 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

EPPINGNorthern Hospital 185 Cooper Street, EppingContact: (03) 8405 8000 Fax: (03) 8405 8524

FITZROYSt Vincent’s Hospital35 Victoria Parade, Fitzroy Contact: (03) 9231 3475Fax: (03) 9231 3489

FOOTSCRAYWestern HospitalGordon Street, FootscrayContact: (03) 8345 6291Fax: (03) 8345 6619

FRANKSTONPeninsula Liver Clinic141 Cranbourne Road, FrankstonContact: (03) 9770 0139

GEELONGGeelong Hospital

Bellarine Street, Geelong

Contact: (03) 5246 5117

Fax: (03) 5221 3429

GIPPSLANDCentral Gippsland Health Service

155 Guthridge Parade, Sale

Contact: (03) 5143 8600

HEIDELBERGAustin Hospital

145 Studley Road, Heidelberg

Contact: (03) 9496 2787

Fax: (03) 9496 7232

WEST HEIDELBERGBanyule 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

MAROONDAHMaroondah Hospital (Eastern Health)

Out-Patients, Ground Floor, Davey Drive,

Ringwood East

Contact: 1300 342 255

Fax: (03) 9871 3202

MILDURAMildura Infectious Diseases Unit

234 Thirteenth Street, Mildura

Contact: 0408 581 781

PARKVILLERoyal Melbourne Hospital

Corner Royal Parade and Grattan Streets,

Parkville

Contact: (03) 9342 7212

Fax: (03) 9342 7277

PRAHRANAlfred Hospital

Infectious Diseases Department

99 Commercial Road, Prahran

Contact: (03) 9076 2359

Fax: (03) 9076 2194

Liver clinics

21

SANDRINGHAMBayside Hepatitis Clinic (Alfred Hospital)

193 Bluff Road, Sandringham

Contact: (03) 9076 2259

Fax: (03) 9076 2194

SHEPPARTONGoulburn Valley Health Centre

50 Graham Street, Shepparton

Contact: (03) 5832 3600

Fax: (03) 5831 6032

SPRINGVALESpringvale Community Health

55 Buckingham Street, Springvale

Contact: (03) 9594 3088

Fax: (03) 9594 2273

TRARALGONLatrobe Regional Hospital

Private Consulting Suites 3 and 4

Princes Highway, Traralgon West

Contact: (03) 5173 8111

Fax: (03) 5173 8097

WARRNAMBOOLWarrnambool Physicians’ Rooms

St John of God

Warrnambool Hospital,

Suite 4, Wentworthh Street Consulting

Rooms, Warrnambool

Contact: (03) 5562 9444

Fax: (03) 5561 2699

WODONGAMurray Valley (Private) Hospital

Nordsvan Drive, Wodonga

Contact: (02) 6056 3366

Fax: (02) 6056 3466

Community-based hepatitis C treatment servicesCommunity based treatment clinics have

been developed to enable more people to

access treatment in their local communities.

Barkly Street Medical Centre Dr Elizabeth Leder

Dr David Iser visits monthly

60 Barkly Street, St Kilda

Contact: (03) 9534 0531

Cohealth (formerly North Yarra

Community Health)

75 Brunswick Street, Fitzroy

Contact: (03) 9411 3555

Cranbourne Integrated Care Centre

Hepatitis Outreach treatment clinic

140-154 Sladen Street, Cranbourne

Contact: (03) 03 5990 6789

Fax: (03) 03 5990 6328

Gateway Community Health155 High St, Wodonga

Contact: (02) 6022 8888 Fax: (02) 6024 5792

Health Works

4-12 Buckley Street, Footscray

Contact: (03) 9362 8100

Living Room

7-9 Hosier Lane, Melbourne

Contact: (03) 9945 2100

North Richmond Community Health

Dr John Furler

Weekly visiting Hep C Nurse

23 Lennox Street, Richmond

Contact: (03) 9418 9800

Nunawading Clinic

176 Springvale Road, Nunawading

Dr David Ross GP s100 prescriber for

HCV and Opiate Replacement Program

Contact: (03) 9878 9191

St Kyrollos Family Clinic

Dr Ashraf Saddik

Monthly visiting Hep C Nurse

2A Moore Street, Coburg

Contact: (03) 9386 0900

Werribee Mercy Hospital

Consulting Suites

300 Princess Hwy, Werribee

Contact: (03) 9288 2171

Fax: (03) 9288 3596

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

Access Health

Primary health care 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: (03) 9536 7780

Health Works Primary health care and needle

syringe program

Hepatitis C information, support

and treatment

4-12 Buckley Street, Footscray

Contact: (03) 9362 8100

www.wrhc.com.au/Services_HEALTH.html

Inner Space Primary health care and needle

syringe program

Hepatitis C information, support

and treatment.

4 Johnson Street, Collingwood

Contact: (03) 9468 2800

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

Contacts

22

Living RoomPrimary health care and needle syringe program Hepatitis C information, support and treatment services7-9 Hosier Lane (off Flinders Lane), MelbourneContact: (03) 9662 4488www.youthprojects.org.au

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

Turning Point54-62 Gertrude Street, FitzroyContact: (03) 8413 8413Email: info@turningpoint.org.auWeb: www.turningpoint.org.au

Indigenous HealthNgwala Willumbong Co-op Limited93 Wellington Street, St KildaIndigenous drug and alcohol serviceContact: (03) 9510 3233Email: reception@ngwala.org

VACCHO (Victorian Aboriginal Community Controlled Health Organisation)17 - 23 Sackville Street, CollingwoodContact: (03) 9411 9411Email: wendyb@vaccho.com.auWeb: www.vaccho.org.au

Victorian Aboriginal Health Service186 Nicholson Street, Fitzroy Contact: (03) 9419 3000

Sexual HealthMelbourne Sexual Health Centre580 Swanston Street, MelbourneContact: (03) 9341 6200Free call: 1800 032 017

Multicultural Health and Support Service, HIV, hepatitis C and sexually transmissible infections23 Lennox Street, RichmondContact: (03) 9418 9929

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

Related Health ServicesPenington Institute - formerly ANEX

(Association for Needle Exchanges)

95 Drummond Street, Carlton

Contact: (03) 9650 0699

Harm Reduction Victoria (HRV)128 Peel Street, North Melbourne

Contact: (03) 9329 1500

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

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

HIV/Hepatitis/STI Education and Resource Centre at the AlfredMoubray Street, PrahranStatewide resource centre on HIV/AIDS, Hepatitis and Sexually Transmissible InfectionsContact: (03) 9076 6993Web: www.alfredhealth.org.auMultilingual Hepatitis C ResourcesThis website has over 400 pages of hepatitis C and HIV information in 18 languages.www.multiculturalhivhepc.net.au

Health Services Commissioner30th Floor, 570 Bourke Street, MelbourneFreecall: 1800 136 066Email: hsc@health.vic.gov.au

Victorian Equal Opportunity and Human Rights CommissionInformation on state and federal equal opportunity laws and programsLevel 3, 204 Lygon Street, CarltonContact: 1300 891 848Email: information@veohrc.vic.gov.auWeb: www.humanrightscommission.vic.gov.au

Victorian Viral Hepatitis EducatorTraining for Doctors, Nurses and other health professionalsContact: (03) 9288 3586

0407 865 140

Regional servicesThese contacts are able to provide

information about local viral hepatitis

related services.

Ballarat Community Health Marg Stangl

Contact: (03) 5338 4500

Barwon - Surf Coast Health Service Contact: 03) 4215 7850

Barwon Health Drug and Alcohol Services Contact: (03) 4215 8700

Bendigo HealthCatina Eyres

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

Transmitted Infections

Contact: (03) 5443 8355

Email: can@can.org.au

Web: www.can.org.au

Jigsaw Youth Health Service (Barwon Health Geelong)

Rochelle Hamilton

Contact: 1300 094 187

Latrobe - Mobile Drug Safety WorkerHelen Warner

0438 128 919

Mildura - Sunraysia Community Health Anne Watts

Contact: (03) 5022 5444

Email: schs@schs.com.au

Moe Community Health Centre Contact: 1800 242 696

Portland - Glenelg Southern Grampians Drug Treatment Service

Bev McIlroy

Contact: (03) 5521 0350

Contacts

23

Shepparton Community HealthContact: (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.

HEPATITISVICTORIASUPPORT GROUPThe Hepatitis Support Group meets

at the offices 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.

Please note that, because of the nature of

the discussions, Support Group meetings

are not suitable for children.

The final Sunday Support Group for 2014 was held on 16 November. Details for the 2015 Support Group sessions will soon be finalised and posted on the Hepatitis Victoria website: www.hepvic.org.au

In the meantime if you have any queries please email: admin@hepvic.org.au or call the Hepatitis Infoline 1800 703 003

Contacts

24

1800 703 003

Hepatitis InfolineCall 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.

HoursMonday to Friday 9.00am – 5.00pm

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

Your donations help us to provide information, services, advocacy, resources and support for people affected by

viral hepatitis, health profess ionals 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

Your donations make a difference!