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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.
…AN
EN
D TO
STI
GMA
…ENGAGED POLITICIANS…
INCREASED AW
ARENESS AN
D STO
PPING N
EW IN
FECTION
S
…ACCESS TO
NEW
TREATMEN
TS
…NEW MEDICAL ADVANCEMENTS
…RAPID TESTING CLINICS
…CONSIDERATION OF OUR PRISON POPULATION
…ADEQ
UATE FUN
DING
TO
ADDRESS HEP B
All we want for 2015...
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Melanie EagleCEOTelephone: 9385 [email protected]
Garry IrvingPrograms and Operations ManagerTelephone: 9385 [email protected]
Damian SaltOffice CoodinatorTelephone: 9380 [email protected]
Judi BrewsterHealth Promotion OfficerTelephone: 9385 [email protected]
Zoe PeckDevelopment CoordinatorTelephone: 9385 [email protected]
Marg SutherlandHealth Promotion OfficerTelephone: 9385 [email protected]
Melissa WrightHealth Promotion OfficerTelephone: 9385 [email protected]
Shinen WongHealth Promotion OfficerTelephone: 9385 [email protected]
Garry SattellCommunity Support Services CoordinatorTelephone: 9385 [email protected]
Marina MazzaCommunity Participation Project Officer Telephone: 9385 9106 [email protected]
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: [email protected]
Contact and postal address:
Hepatitis VictoriaSuite 5, 200 Sydney Road, Brunswick, Victoria 3056.
Telephone: (03) 9380 4644 Facsimile: (03) 9380 4688
Email: [email protected] 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
5
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.
6
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.
9
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
11
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
12
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: [email protected], 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…
© C
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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
he New
Mexico H
ep C P
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: [email protected]: www.turningpoint.org.au
Indigenous HealthNgwala Willumbong Co-op Limited93 Wellington Street, St KildaIndigenous drug and alcohol serviceContact: (03) 9510 3233Email: [email protected]
VACCHO (Victorian Aboriginal Community Controlled Health Organisation)17 - 23 Sackville Street, CollingwoodContact: (03) 9411 9411Email: [email protected]: 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: [email protected]
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: [email protected]
Victorian Equal Opportunity and Human Rights CommissionInformation on state and federal equal opportunity laws and programsLevel 3, 204 Lygon Street, CarltonContact: 1300 891 848Email: [email protected]: 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: [email protected]
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: [email protected]
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: [email protected]
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: [email protected] 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: [email protected]
Your donations make a difference!