Good Liver - December by Hepatitis Victoria

The Magazine of Hepatitis Victoria

December 2014

Good Liver …AN END TO STIGMA

All we want for 2015... …ENGAGED POLITICIANS …ACCESS TO NEW TREATMENTS

…INCREASED AWARENESS AND STOPPING NEW INFECTIONS

…RAPID TESTING CLINICS …ADEQUATE FUNDING TO ADDRESS HEP B

…NEW MEDICAL ADVANCEMENTS

…CONSIDERATION OF OUR PRISON POPULATION

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

Raising awareness about viral hepatitis • Community Advocates • Multicultural media • Educating Vietnamese communities • Festival and events •Yarning about hepatitis C 1

Staff

Contents

Contact and postal address:

Melanie Eagle

CommuniquĂŠ

Hepatitis Victoria

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

From the desk of the

Chief Executive Officer

4 6

De-livering the news

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 Damian Salt Office Coodinator Telephone: 9380 4644 admin@hepvic.org.au Judi Brewster Health Promotion Officer Telephone: 9385 9111 judi@hepvic.org.au Zoe Peck Development Coordinator Telephone: 9385 9105 zoe@hepvic.org.au Marg Sutherland Health Promotion Officer Telephone: 9385 9103 marg@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

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.

Community Participation Project Officer Telephone: 9385 9106 marina@hepvic.org.au

Reader response Your comments or experiences in regard to any articles in Good Liver are welcome. Email: admin@hepvic.org.au

Graphic Design: Swivel Design 0435 733 206

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

10 The push for change 13

Julie Sheils

The stigma has to stop

Quarterly wrap-up

Events and training

Finding hepatitis C in high-risk population

How New York City did it

New Hep Hero

Jules Cassidy

Capturing impact

Prison Peer Education

Advocating for access to new hepatitis C treatments

Spotlight on innovative youth

Your mob, my mob, our mob.

20 21

Liver clinics Contacts

Communique

From the desk of the Chief Executive Officer prevent transmission, treat early and ultimately

our heroes and show them to the world.

end hepatitis).

We can support those who speak publicly.

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

So what do we wish for in 2015?

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).

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.

street. I want to see them knocking on the door

And for some this might mean casting off

of politicians. I want to see them going viral on

fear. Disowning stigma and saying I will not

social media.

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. So that is what I really want for 2015. How will we get to this position –

rights. I will not let my voice be silenced. It is time I was heard. I will no longer be ignored.

I could talk about resources. (And yes we

acknowledging that Santa is probably not

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

need an end to the inequities and instead have

packaging viral-hepatitis-self-mobilisation-

clinicians, health workers, advocates,

this condition that affects 2% of the population

magic on his sleigh just at the moment?

we here at Hepatitis Victoria, and most

properly funded – across research, prevention, treatment, support and awareness raising).

Here at Hepatitis Victoria we can do some of the ground work. We can run campaigns

importantly the people affected. Let’s get mobilized. Let’s demand change. Let’s be loud!

I could even talk about ending hepatitis. (And

and create advocacy opportunities. We can

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

train people and back them up with media

Melanie Eagle

the right actions in place now we could in time

releases and online petitions. We can support

CEO

De-livering the news Funding uncertainty

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-

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

waiting-list-20141017-116ji1.html

Eat yourself happy

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.   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 newonset 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

New treatments, medical advancements

New technique increases chances for liver transplant rate.

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

The Sydney Morning Herald recently reported on a new technique that

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

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

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

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

for patients to predict the drugs effectiveness before treatment

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

is initiated.

Approximately 10 percent of Americans have some form of liver

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

disease, but fortunately, the research community has made great strides in recent years in developing new treatments for patients.

Canada

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

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

presented, including 246 abstracts presented in oral sessions.

New HCV drugs pass muster in real world MedPage 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/

At the first International Meeting on Hepatitis Cure & Eradication in 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/

MeetingCoverage/AASLD/48495

Success in first human trials of hepatitis C vaccine According 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-cfamous-faces#11

In the UK

Taking it to the streets… Street Shot 2014 is going on the road and will be hitting Sunshine and Shepparton.

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

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.

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

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.

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

Watch our Facebook page for further details about these events.

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

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

All we want for 2015... 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 saidâ&#x20AC;Ś

Joel Murray

Kate Bindu

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.

Marion Lau

Community Member 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,

Hep Hero, Victorian Multicultural Commission

not evenings, as I travel quite a long way to

What I would like to see in 2015 is the

get to them (Creswick). Blessings to all and

perception of having viral hepatitis as a

Happy Xmas.

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.

Ben Cowie

Nellie Montague

Emily Lenton BBV Program Co-ordinator

Volunteer

Hep Hero and Epidemiologist A commitment from the Victorian Government

All I want for 2015 is for more people to know

to implementing an evidence-based and

the realities of viral hepatitis and how to

appropriately funded program to address

avoid it.

the needs of the 55,000 Victorians living with chronic hepatitis B. Together, let us make 2014 the last year in which the increasing

Jen Anderson

numbers of Victorian deaths due to hepatitis B were met with excuses and inaction.

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.

Professor Rob Moodie

Ross Williams

Community Advocate What I would like to see in 2015 is for Victorian government to show real

Hep Hero, Melbourne School of Population and Global Heath

commitment to tackling the issues around Hepatitis. We need government to understand the seriousness of the problem

All I want for 2015… is for countries,

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

governments, industries and civil societies

committing to Hepatitis Victoria’s Framework

across the globe to invest in the prevention

for Action – it’s a good plan!

of hepatitis. To think hard about how can we avoid unnecessary suffering and death by being a bit bolder, smarter and braver.

Community Advocate 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.

All we want for 2015... Damian Salt

Professor Carla Treloar

• funding being provided to support the development of a community based response to viral hepatitis

Community Advocate

• that communities most affected by

hepatitis are intrinsically involved at all

I was diagnosed with hepatitis C when I

levels of the response

was 46. I found the diagnosis devastating.

At a personal level: access to treatments that

With a history of anxiety and depression the

work and won’t send me mad.

current form of treatment was not an option for me. I knew very little about the virus and

Karen Jehn

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

Hep Hero

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.

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

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.

Jack Wallace

Hep Hero and Researcher At a community level:

• a government strategy that ensures that the dedication, commitment, work and

energy of people working in hepatitis B

managing hepatitis B, thus freeing up tertiary

and hepatitis C is focused, supported

centre appointments for complex cases.

and efficient

Community Advocate and volunteer 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.

Margaret Hellard

For people infected with hepatitis C

• A point of care test for hepatitis C

For hepatitis B

• A community education program to raise awareness of hepatitis B in key affected populations in Victoria, in particular in

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

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.

not require any blood tests or further monitoring (except for the HCV RNA point of care test I mentioned above that

• A quality screening/testing program that provides testing for people at risk of

would be performed 12 weeks after the

Hep Hero, Burnett Institute 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

end of treatment to show they are cured). Obviously this treatment is available to anyone who wants it.

• The effective hepatitis C vaccine I

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

• 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/

requested above to be given to everyone

service that does not reuse medical

who has had treatment, that wants it to

equipment and that has high quality

reduce their reinfection risk

• Infrastructure and funding to ensure this is able to be provided to all who need it.

• Education programs to reduce behaviours • A high quality surveillance system to that put people at risk of hepatitis C measure and monitor the success of the • Annual point of care antibody tests program. • An effective hepatitis C vaccine, • A reduction in stigma and discrimination infrastructure and funding to ensure this is able to be provided to all who need it

hepatitis B – preferably oint-of-care.

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

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.

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..

The push for change the population, acting as an effective provision of low threshold and community With viral hepatitis being preventative measure. based HCV testing (voluntary, confidential a significant issue and free of charge) and referral to • At present polices responding to HCV worldwide, we thought it affordable and high quality treatment are inconsistent, or non-existent across would be good to take a (interferon free) and care for HCV. Europe. The broad range of issues Consensus agreements must be made pertaining to HCV have not been look at what is happening among pharmaceutical companies and thoroughly included in European and/or (or what our colleagues are EU member states to reduce prices of national policies, or comprehensively dealt seeking to have happen) new medications to allow the scale-up of with among designated stakeholders. treatment, thereby allowing for equitable around the world in the push • HCV prevention, screening, early access to affordable treatments.   for change: diagnosis, and treatment among people who inject drugs have been proven to be • Scale-up Harm Reduction, evidence and On the world stage: Community-Based Programs: ensuring 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.

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.

• Importantly there has been little attention to • Meaningful inclusion of People who Inject Europe The 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

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

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.

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

Asia The 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

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

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

2. Policy Research and Development Identify information data gaps and ways to address deficiencies eg. improving disease surveillance systems

•

• Conduct policy research to inform

“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

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

impact and achieve positive outcomes in the

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

Facilitated discussion and collaboration

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

•

of society across the globe.

local stakeholders to build knowledge base:

CEVHAP is keen to do more to support their

civil society and people themselves who public awareness across at many levels

• Greater engagement with

government policy development eg. Patient Needs Assessments, Policy Survey and Analyses

business sector, academic researchers, are infected, emphasizing the need to raise

be developed.

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

members and stakeholder organisations in their various WHD activities, to further build 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.

• Policy Survey and Assessment Project – Taiwan

Continued on page 12

The push for change U

ntil 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.

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 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.

The immune response elicited by our vaccine

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 vaccine Our 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

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!

Julie Sheils

The stigma has to stop

he stigma has to stop says the woman

and, for instance, advised women with hep C

health in the State Government, and would

who gave Good Liver its name.

not to have children. No one knew anything

ring him every couple of weeks with the

with any consistency. I was told, for instance,

latest outrageous story reported through the

to avoid tomatoes. No one understood just

helpline.”

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

how dangerous blood could be. People with hep C feared for their jobs. The level of stigma was high.”

“After the Myer money came through, I told

him it would be really embarrassing if the poor health information revealed by our huge

newsletter. Carmel Shute spoke to her about

Approaches for funding to the Federal and

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

Victorian Governments resulted in a lot of

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

Julie Shiels joined the Hepatitis C Foundation

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

a meeting with me and senior bureaucrats and

in 1994, not long after it was started by Joan

experience in NGOs and grant writing, then

we worked on a service agreement.”

Alter whose husband acquired the virus during

applied to the Myer Foundation for funding –

a mass vaccination program whilst stationed

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

in Italy after World War 2. The Foundation’s

a game-changer.

husband was transferred for work. Nearly two

main activity was running

“It meant that the Hepatitis C Foundation

a telephone helpline.

could employ a volunteer co-ordinator. He’d

to people with hep C.

“Chris Richards, the head of the Fairfield

had experience in the AIDs education and

Infectious Diseases Hospital, provided us

helped us draw up policies, procedures and

with a room and some resources and our

protocols. I was chairperson for a short time

ambition was for a 24-hour helpline, all run

and rebranded our newsletter as Good Liver

by volunteers. It was an impossible task. We

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

were up against it – no funding and health

Julie said.

services that hadn’t kept up to date with

“The Myer Foundation funding allowed us

developments,” Julie said. “It was just dreadful. Doctors were ill informed

to leverage the State Government. I’d got to know John Carney, the head of public

database of callers were made public – and

Soon after, Shiels moved to Vietnam as her decades later, she’s still appalled by attitudes

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

Quarterly wrap-up – events and training Horsham Regional Viral Hepatitis Forum, which was held at the beautiful Horsham Golf Club.

Horsham forum goes viral

Multicultural Women’s Forum Hepatitis 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.

reach for many regional workers due to the

Around 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.

time and expense associated with travel and

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.

This event was made possible through a grant

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.

Diseases Laboratory), Nicole Allard (GP Co

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

overnight stays. The venue was set amongst the beautiful Horsham Golf Club grounds which made for a perfect setting for this highly successful day.

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 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.

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

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

Finding hepatitis C in high-risk populations: 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 2015

Shed3 (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

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.

• Medicare-subsidised hep C antibody tests, • Pharmaceutical Benefits Scheme (PBS)

How New York City did it

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 The Check Hep C Program involved eight organizations at 12 community sites, including rapid testing, and confirmation (RNA testing) immediately after HCV antibody positive tests. syringe exchange programs and community health centres. Over 4,500 people were In the Check Hep C program population, screened and tested, and of those who tested the estimated prevalence of HCV infection HCV RNA positive, 85% attended their first was 14%, and 9% among persons born after medical appointment and 50% remained in 1965 and 14% among baby boomers. Among care, which put them in the position to benefit enrollees, 25% had injected drugs in the past from the HCV treatment advances of 2014. (20 times more likely to have HCV infection), In describing the Check Hep C program, Mary 15% were homeless (1.6 times more likely Ford, MS, program evaluator for the program to have HCV infection), and 18% had been previously incarcerated (five times more said, “The screening protocol for the Check likely to have HCV infection). In addition to Hep C program includes testing those in the supporting the birth cohort based screening birth cohort as well as those who are at high risk from injection drug use either currently or recommendation of the CDC, the authors of the article recommend expanding the Check Hep C in the past.” model to settings with high-risk populations. After the Centre for Disease Control and “Further outreach and education to primary Prevention (CDC) recommended a one-time screening for HCV infection for all Americans care providers will be needed to fully implement the testing mandate, and programs like Check born from 1945 to 1965 (baby boomers), Hep C will play an integral role this process New York State passed a law mandating in high-risk communities, said Ms. Ford. “The that health care providers offer a HCV test to individuals in this age group, and provide care, successful model demonstrated in Check Hep or linkage to care, for those who test positive. C can be replicated not only in communitybased organizations, but also in community However, many people at high risk for HCV were not visiting a health care provider to get health centres, and outpatient clinics of large medical centres.” 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

(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…

New Hep Hero Jules Cassidy

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.

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. 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.

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

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.

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 Cassidy Hep Hero

Capturing Impact 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.

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

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

resources and activities have reached

1. Why does the project need to be done?

their attention. We can see the increase

support group members as they begin to

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?

individuals that may never have heard of viral hepatitis and brought the issue to in confidence and emotional wellbeing of 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

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

Prison page peer education Blank

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

In 2011 the Hep C training manual for Prison

C become available in the future, the role

for and rates of hepatitis C. Hepatitis

Peer Educators was launched. This resource

of peer educators in the provision

Victoria has undertaken prison specific

is unique in that it is written by a prisoner

of accurate and up to date information to

work since 2001 in recognition. According

for prisoners. Hepatitis Victoria works with

people in custodial settings is essential.

to the Australian Bureau of Statistics, crude

Peer Educators to provide extensive training

imprisonment rates in Victoria increased to

Recent training to induct peer educators was

relating to the specific risks for viral hepatitis,

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

facilitated by an experienced peer educator.

which are unique to custody.

Further illustrating the potential possibilities

Peer educators understand the nuances

for those undertaking the training.

of the custodial environment. They can

Hepatitis Victoria recognises the many

understand problems and experiences

benefits of activities undertaken by peer

Prison is a complex setting, which requires

of people in custody and may be able

educators and supports innovative ideas and

unique, environment-specific solutions to

to offer real solutions, which are context

programs in which they are able to expand

issues, which impact upon the lives of people

specific. Information can be tailored by peer

their role in assisting a population who has

in custody each day. One very important

educators, to be relevant to each setting and

an increased risk of viral hepatitis and who

strategy for addressing many issues

therefore highly individualised messages

are difficult for many services standard to

experienced by people in custodial settings

of harm minimisation. They bring their own

the community to access.

is supporting people in custody to provide

unique knowledge and experience to the

factual information to others. This is called

work they do, they are accessible when

Peer Education.

other organisations may not be and they

Peer educators are trained and supported

borne virus when other health promotion

Increasing numbers of people in custody make this an important risk factor for viral hepatitis.

by several organizations within the justice system to undertake a variety of roles. The

can access those at highest risk of blood activities may be unsuccessful. They can collaborate with services within custody to

importance of Peer Educators is formally

promote services available to inmates, clarify

acknowledged in the framework for action

information or ask questions on behalf of

against communicable diseases used

their peers.

by Justice Health 2012 â&#x20AC;&#x201C; 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.

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

But we also recognize that more is needed in this area:

â&#x20AC;˘ 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.

â&#x20AC;˘ 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.

Hepatitis Victoria has been working with Peer

as a contact for information and prevention to

Melissa Wright

Educators in custodial settings since 2003.

new entrants. As new treatments for hepatitis

Health Promotion Officer

Pic: Participants in The New Mexico Hep C Peer Education Project

eople in custody experience higher risk

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

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

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 Physiciansâ&#x20AC;&#x2122; Rooms

155 High St, Wodonga

St John of God

Contact: (02) 6022 8888

Warrnambool Hospital,

Fax: (02) 6024 5792

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

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)

Marg Stangl

128 Peel Street, North Melbourne

Contact: (03) 5338 4500

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 andâ&#x20AC;&#x2C6; 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

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 andâ&#x20AC;&#x2C6;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

What is Hep Connect?

SUPPORT GROUP

1800 703 003 (free call)

people who are going through the same

Contact: (02) 6022 8888

Hep Connect aims to:

Yarra Valley Community Health Service

• Assist people living with

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

The 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 sorts of challenges as you. It’s a great way to deal with those feelings of

Jenny Horan/Anita

Healesville

HEPATITISVICTORIA

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

isolation and aloneness. Please note that, because of the nature of the discussions, Support Group meetings

hepatitis C

are not suitable for children.

• Assist people’s decision

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

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.

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

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 â&#x20AC;&#x201C; 5.00pm

1800 703 003 Your donations make a difference!

our donations help us to provide information, services, advocacy, resources and support for people affected by viral hepatitis, health professÂionals 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

Suite 5, 200 Sydney Road

Brunswick, Victoria 3056