The Magazine of Hepatitis Victoria
March 2015
Good Liver Seizing opportunities
Parliamentary inquiry into hepatitis C in Australia
Introducing SKiNK: Your Skin, Your Ink, Your Tattoo Tales
Opportunities for new treatments
News on the House of Representative’s investigation and Hepatitis Victoria’s submission to the Victorian inquiry.
SKiNK aims to create a conversation about tattoo art, tattoo culture, and safe tattooing practices.
The Pharmaceutical Benefit Scheme will be considering submissions of new medications for hepatitis C treatments.
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Staff
Contents
Contact and postal address:
Melanie Eagle
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Communiqué
Hepatitis Victoria
CEO Telephone: 9385 9102 melanie@hepvic.org.au
From the desk of the Chief Executive Officer
Garry Irving Programs and Operations Manager Telephone: 9385 9109 garryi@hepvic.org.au
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Hepatitis A, B, C, D and E An overview
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2014 Mark Farmer Memorial Award
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
Martin Forrest Health Promotion Program Manager Telephone: 9385 9111 martin@hepvic.org.au Damian Salt Office Coordinator Telephone: 9380 4644 admin@hepvic.org.au Susan Peterson Health Promotion Officer Telephone: 9385 9105 susan@hepvic.org.au
Kate Bindu
11 New Hep Hero
Jennifer Johnson
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Introducing SKiNk
Your Skin, Your Ink, Your Tattoo Tales
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Parliamentary Inquiry into hepatitis C in Australia
The House of Representatives are undertaking and inquiry into hepatitis C in Australia
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Parliamentary Inquiry Hepatitis Victoria’s submission
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Parliamentary Inquiry Survey results
Melissa Wright Health Promotion Officer Telephone: 9385 9104 melissa@hepvic.org.au
Results of Hepatitis Victoria’s public survey
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Workforce development
Marina Mazza Community Participation Project Officer Telephone: 9385 9112 marina@hepvic.org.au
Zoe Peck Development Coordinator Telephone: 9385 9106 zoe@hepvic.org.au
Reader response
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10 New Hep Hero
Garry Sattell Community Support Services Coordinator Telephone: 9385 9110 garry@hepvic.org.au
Your comments or experiences in regard to any articles in Good Liver are welcome. Email: admin@hepvic.org.au
We ask the people involved
Aurora Tang Health Promotion Officer Telephone: 9385 9103 aurora@hepvic.org.au
Shinen Wong Health Promotion Officer Telephone: 9385 9108 shinen@hepvic.org.au
Good Liver is produced by Hepatitis Victoria, with support from the Victorian Government. The opinions and language expressed in this magazine are not necessarily those of Hepatitis Victoria or the Department of Health.
Graphic Design: Swivel Design 0435 733 206
Hepatitis Victoria’s training and workshops
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Opportunities for new treatments
The latest on the PBAC process
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Liver clinics Contacts
Communique
From the desk of the Chief Executive Officer
So let’s
HEP UP away from what we
already know how to do, and do what we
The figures speak for themselves – and they have to be addressed.
know needs to be done: HEP UP!!!!
So everyone has to…
H
U
HO HUM We already excel at partnership and collaboration – what we need is the policy framework and resourcing for it to work.
E T
his month’s theme is all about seizing opportunities. As a sector we are all
too aware of the issues we face. Sometimes it’s hard to see the wood for the trees. The reality is that we have a lot of data, knowledge, skills and ideas. At a Federal level five strategies have been adopted in relation to blood borne viruses and STIs.
From Victoria’s perspective it is clear that to implement those it is now time for everyone – the broader health sector, government and
P
policy-free, resource-poor zone.
PREVALENCE AND IM(P)ACT Annual DEATHS
• hepatitis C: > 500 • hepatitis B: 386 • HIV/AIDS: < 100 23 • STIs:
Aim: for the response to viral hepatitis to be as successful as the response to HIV/AIDS How: An equitable response proportionate to prevalence
Hepatitis is thriving in a
SO WE MUST NAME AND ADDRESS THE IN(E)QUITY
UPSCALE THE RESPONSE
and impact.
P
PROBLEM SOLVING Five Victorian action plans to guide the implementation of the five National Strategies, (each with priority actions, targets, timelines, responsibilities and $). We already have state priorities for hepatitis B, but need the actions, targets, timelines, responsibilities and $. We need to update the previous state strategy for hepatitis C.
individuals - to act.
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De-livering the news Hepatitis A outbreak
and intervention campaigns to be targeted in the most efficient and appropriate ways. The aim is for it to be used for planning public health and clinical responses, which can reverse the rising burden of hepatitis B related liver cancer nationally. For the first time, national datasets have been used to indicate the current level of diagnosis, monitoring and treatment, as well as vaccination rates and outcomes of infection. The report found that only 57 per cent of people living with hepatitis B have been diagnosed.
An outbreak of hepatitis A in mid-February, believed to be the result of contaminated, imported frozen mixed berries, saw health authorities and media spring into action, and there was a flurry of reporting on the condition. It was a timely reminder of the lack of community awareness about hepatitis generally. An overview of the range of hepatitis strains
The national hepatitis B strategy sets a target to increase the proportion of people living with chronic hepatitis B who are receiving antiviral treatment to 15 per cent. It’s currently five per cent. Increasing uptake of treatment is a means to achieving a significant and sustained reduction in mortality attributable to advanced liver disease and liver cancer. To view the full report go to http://www.ashm.org.au/hbvmapping
Hep Free Shep
appears on the following pages 6-8.
The Treatment and Prevention (TAP) Study The Burnet Institute, in collaboration with St Vincent’s Hospital and The Alfred Hospital Melbourne, has received a grant from Gilead Sciences to study the effectiveness of new highly effective hepatitis C medication in a community setting. The TAP study is the first of its kind in the world. Using a nurse-led model of care, people infected with hepatitis C will have the chance to be treated with new direct-acting antiviral medications (DAAs) sofosbuvir and ledipasvir. Trials to date indicate that they are more effective than existing treatments, with cure rates of over 95%; can be taken for a shorter duration and, are well-tolerated with few side effects– hence the possibility of treating people without them having to attend a hospital service. The TAP study has two key aims: to determine (1) the feasibility of community based treatment; and (2) whether treatment and prevention can reduce hepatitis C transmission and prevalence. The study will run for approximately two years. http://www.burnet.edu.au/projects/227_treatment_and_prevention_ tap_study
Hep B Mapping - Massive Hepatitis B Impact on Liver Cancer The Australasian Society for HIV Medicine (ASHM) and the Victorian Infectious Diseases Reference Laboratory (VIDRL) at the Doherty Institute recently released the second national report from the National Hepatitis B Mapping Project. The report serves as a benchmark against which progress in achieving the national priorities can be assessed. It provides detailed information at a national, state and territory, and local area, and allows for awareness
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Thanks to a partnership initiative between Hepatitis Victoria and GOTAFE, young people in Shepparton will soon be participating in the Street Shot program. This initiative comes at a pivotal time: the rates of hepatitis C notifications in Shepparton are 35% higher than the Victorian average, and the region rates 15 out of 79 Victorian local government authorities with respect to hepatitis C notification rates. According to Hepatitis Victoria CEO, Melanie Eagle, in spite of these startling statistics there is a frightening lack of awareness about this chronic illness. “The increasing prevalence of viral hepatitis, especially in young people, is incomprehensible, particularly when transmission can so easily be prevented.” “But in order to build awareness and reduce the stigma, we need to get people talking about it. So initiatives that connect and resonate with young people are vital.” The Street Shot education sessions will be undertaken with local students on 25 March. And after a successful run in Footscray and Sunshine
last year, the Street Shot photographic exhibition will be on display at Shepparton GOTAFE from 25 March until 17 April.
A video, titled ‘Hepatitis C Awareness in Guelph,’ that was filmed during World Hepatitis Day has also been released.
Hepatitis Victoria gratefully acknowledges funding from the McEwen Foundation and the Foundation for Rural and Regional Renewal in
For further information go to: http://sanguen.com/
support of this event.
Our Heroes in the news – John Kenney With a number of recent and imminent public appearances, our Hep Hero, John Kenney is fast becoming a poster man. Recently the Brimbank Star ran a full page story on John: his insights and messages for young people in light of recent figures showing Brimbank had the highest rate of hepatitis B diagnoses in Victoria in 2012, and the second highest number of hepatitis C diagnoses. Sadly more than 15% of hepatitis C notifications were in young people aged 25 or younger. The full story can be viewed: http://www.brimbank.starweekly.com.au/ story/1830267/hepatitis-victoria-s-hep-hero-john-kenney-presses-point/ And just the other weekend John appeared with members of the Hepatitis Victoria team at the Sydney Road Street Party.
Portugal to treat up to 13,000 The Hepatitis C Trust reports that the Portuguese government has agreed to treat up to 13,000 people infected with hepatitis C in the next three years. The Portuguese Minister of Health was quoted as saying “We will be able to treat more in a fairer way. We will open ways to initiate the eradication, the elimination of the disease”. It is understood the government will pay for every treatment undertaken: “We will not pay for three, 12 or 24 weeks of treatment, but for each patient treated”, the Minister is quoted as saying. He also said that the state will not cover expenses if the patient needs additional treatment. The move came on the heels of the death of 51-year-old female liver cancer patient who died last month while waiting to receive treatment. Shortly before the announcement, the new Gilead Sciences drug, Sovaldi, reached the European market. According to Portuguese daily newspaper Publico, the agreement between the Ministry of Health, the National Authority for Medication and U.S. drug industry group Gilead Sciences was made on 19 February, following a week of intense negotiations. Sovaldi is expected to cost up to 25,000 euros (28,287 U.S. dollars) in Portugal per treatment, the same price agreed for Spain.
Prince Edward Island (P.E.I) Canada, leading the way in hepatitis C management strategies P.E.I is leading the way in proactive management strategies with the province’s Health and Wellness minister recently announcing a $5-million hepatitis C management strategy unique to P.E.I.
What’s happening overseas GUELPH, Canada
the Sanguen Health Centre recently launched a health care/harm reduction related program which aims to educate and minimise the potential for hepatitis C infection as well as other infections. The pilot project offers free colour-coded syringe ‘Kloud Kits’ for intravenous drug users. The initiative is seeking to try to reduce the chance of accidentally sharing used needles and running the risk of contracting infections. The pilot project will continue for as long as supplies of the British-sourced syringes last (the centre has obtained thousands).
P.E.I will be the first province in Canada to make available new treatments recently approved by Health Canada that can cure the hepatitis C virus (HCV) genotype 1, which is carried by 70 to 75 per cent of Islanders with hepatitis C. The treatment with HOLKIRA PAK takes 12 weeks with a daily pill and fewer side effects. About 400 Islanders are known to have been infected with the hepatitis C virus and at least 60 are in the advanced stages of the disease The Minister said the province’s small size was advantageous in implementing this type of strategy, making it possible to closely monitor and assess HCV cases and mobilize and coordinate health resources. The province is working with the pharmaceutical company AbbVie to offer services including referral of patients, assessments, treatment support, education and follow-up. The province will invest $1.6 million in the program in each of the next three years.
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HEPATITIS
An overview
A C DANDE B
The following is intended as an overview only. For further information go to: www.hepatitisaustralia.com/
infection.
600,000 people die every year due to the
Symptoms
consequences of hepatitis B.
Symptoms generally include fever, weakness,
In Australia, it is estimated that 225,000
fatigue, loss of appetite, nausea, joint aches
people are chronically infected with hepatitis
and pains, vomiting, and jaundice (yellowish
B. However, nearly half of those living
Hepatitis
eyes and skin, dark urine and pale-coloured
with chronic hepatitis B in Australia are
faeces).
undiagnosed.
A
BC DE Overview Hepatitis A is an acute (short-term) infection of the liver that can be serious and require medical attention. It is spread through the faecal-oral route or when infected faecal matter enters the mouth. Symptoms can be debilitating but most people infected
People with chronic hepatitis B have a
Two billion people worldwide have been infected with hepatitis B globally, and about 600,000 people die every year due to the consequences of hepatitis B.
with hepatitis A recover completely. Once you have had hepatitis A you cannot get it again. Hepatitis A is preventable with good personal hygiene. Hepatitis A is diagnosed by a simple blood test. There is a vaccine, usually recommended for people travelling to high prevalence countries.
Hepatitis
A
Prevalence In Australia, there are approximately 300â&#x20AC;&#x201C;500 cases of hepatitis A reported per year. The number of cases reported has been declining nationally since the late 1990s (DoHA 2006). In 2013 there were 170 diagnosed cases of hepatitis A in Australia.
Transmission In Australia infection with hepatitis A is more likely in particular locations and amongst specific groups of people, including child day-care centres and preschools; men who have sex with men; injecting drug users; residential facilities for the intellectually disabled; and; travellers to countries where the infection is common
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B
C DE
significantly increased risk of developing liver cancer. Deaths from primary liver cancer are climbing faster than any other cause of cancer death in Australia.
Transmission Hepatitis B is a blood-borne and a sexually transmitted infection. Hepatitis B is spread through the blood or sexual fluids (vaginal fluids or semen) of an infected person entering the blood stream of a non-infected person. It can also be transmitted from mother to baby during birth. The hepatitis B virus cannot penetrate unbroken skin and is killed by the digestive juices in the stomach if it is swallowed. It is NOT spread by contaminated food or water, and cannot be spread through casual or social contact such as kissing, sneezing or coughing, hugging or eating food prepared by a person with hepatitis B.
Symptoms Most people (95%) who get infected with
Overview
hepatitis B as an adult will have a short
Hepatitis B is the most common liver infection
term (acute) illness, and their body will
in the world and is caused by the hepatitis
get rid of the virus naturally. Symptoms of
B virus. A blood borne virus, it attaches
acute hepatitis B infection may be flu-like
to healthy liver cells and multiplies. This
symptoms, muscle aches and pain, nausea,
replication then triggers a response from
vomiting, fatigue and jaundice (yellow skin
the bodyâ&#x20AC;&#x2122;s immune system. People are
and eyes), however many people will have
often unaware they have been infected with
no symptoms at all and not know that they
the hepatitis B at this stage. Hepatitis B
have the infection.
infection can lead to cirrhosis (scarring of the liver), liver cancer or liver failure if it is not diagnosed and managed. Hepatitis B is diagnosed through various blood tests, which look for markers of the virus in the blood.
People with chronic hepatitis B often experience no symptoms at all, or nonspecific symptoms. Most people with chronic hepatitis B have had the infection since birth or early childhood, and so may not know that
(Asia, Africa, South-Pacific, Central
Prevalence
the symptoms they experience are abnormal
and South America). Drinking or eating
Two billion people worldwide have been
in any way. Symptoms vary and their severity
contaminated water or food could result in
infected with hepatitis B globally, and about
and intensity may rise and fall over time.
Hepatitis
AB Overview
C
DE
The hepatitis C virus is one of several viruses that can cause inflammation of the liver. Hepatitis C can damage the liver. The amount of damage may be slight or serious.
Prevalence It is estimated that 150 million people worldwide are chronically infected with hepatitis C. In Australia, approximately 233,000 are living with chronic hepatitis C. It is estimated that without significant preventative action there will be a 245%
Hepatitis
increase (in Australia) in liver cancer due to hepatitis C by 2030.
Transmission Hepatitis C is a blood borne virus. Transmission may occur when the blood of an infected person enters the bloodstream of another person; through unsafe injecting
D
ABC Overview
E
Hepatitis D is a liver disease caused by the hepatitis D virus, a defective virus that needs the hepatitis B virus to exist. Infection can occur as a co-infection, which means it occurs at the same time as hepatitis B
Hepatitis C infection involves an initial
drug use, unsterile tattooing or body piercing
acute phase of infection that may not be
procedures; unsterile medical procedures
noticeable, because in most cases people
or vaccinations (particularly in countries
do not feel sick. This phase can last up to
with high rates of hepatitis C); needle-stick
People who are co-infected with hepatitis
six months, and levels of the virus in the
injuries and accidental exposure to infected
B and hepatitis D may experience a more
blood rise dramatically until the bodyâ&#x20AC;&#x2122;s
blood or blood products; exposure to
seriously acute illness and have a higher risk
immune system starts to produce antibodies.
blood in the home; or, some other form of
(2%â&#x20AC;&#x201C;20%) of developing acute liver failure
Antibodies are made in response to the
blood-to-blood contact.
compared to people infected with hepatitis
presence of the hepatitis C virus.
The hepatitis C virus cannot penetrate
On average, around 25% of people who
unbroken skin and is killed by the digestive
contract hepatitis C will clear the virus
juices in the stomach if it is swallowed.
naturally within the first 12 months. For the
Symptoms
remaining 75% of people the virus is not
Some of the symptoms that people may
eliminated. For these people the virus will
experience include flu like symptoms, pain
probably remain in their body for the rest of
in the liver region, fatigue, night sweats,
their lives. This is called chronic (long term)
abdominal bloating, nausea/indigestion,
hepatitis C.
increased perspiration, poor concentration
The initial screening test for hepatitis C is a blood test, which checks for antibodies. The human body produces antibodies in response to the virus. A different test, the Polymerase Chain Reaction (PCR) test is used to see whether the virus is in the blood. A further test: HCV PCR genotype test determines which particular strain of the virus a person has. A Liver Function Test (LFT) is a blood test that gives an indication of whether the liver is functioning properly, and provides a gauge of possible damage to liver cells. Treatment is tailored according to the particular genotype or strain of hepatitis C. Currently there is no vaccine available for the prevention of hepatitis C.
and forgetfulness, itching and skin problems,
infection; or it can occur as a superinfection in people who already have chronic hepatitis B.
B alone. However, most people who are co-infected will clear hepatitis D and never develop chronic hepatitis D infection. People with chronic hepatitis B who are infected with hepatitis D (superinfection) usually develop chronic (long term) hepatitis D infection. Long-term studies of people with hepatitis D superinfection show that between 70% and 80% develop cirrhosis (liver scarring) compared to 15% to 30% of people
depression, irritability, mood swings, adverse
with chronic hepatitis B alone.
reactions to alcohol, loss of appetite,
The hepatitis B vaccine can prevent infection
diarrhoea and irritable bowel syndrome
with hepatitis D. Diagnosis can be made by a blood test. There is no specific treatment
On average, around 25% of people who contract hepatitis C will clear the virus naturally within the first 12 months. For the remaining 75% of people the virus is not eliminated.
for hepatitis D. Research indicates that the medication used to treat hepatitis B has a limited effect on the activity of hepatitis D virus.
Prevalence Worldwide the pattern of hepatitis D infection is similar to the occurrence of hepatitis B infection and it has been estimated that 15 million people with hepatitis B are infected with hepatitis D. Hepatitis D is not a common infection in Australia. Over the past 6 years there have been between 20 and 30 cases diagnosed and reported each year.
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HEPATITIS C, D and E All we wantA,forB,2015... Continued Transmission
Hepatitis
Hepatitis D is spread in similar ways to hepatitis B because the virus is found in blood. Therefore, whenever blood from an infected person enters the bloodstream of a person who is not immune there is the risk of transmission. For example, hepatitis D infection can occur through sharing injecting equipment, or through needle stick or sharps injuries. It is less common for hepatitis D to be spread through sexual contact, or mother to baby transmission compared to hepatitis B.
Symptoms Symptoms of hepatitis D include loss of appetite, nausea and vomiting, tiredness, pain in the liver (upper, right side of abdomen), muscle and joint pain, and jaundice (yellowish eyes and skin, dark urine and pale-coloured faeces.
Hepatitis E is not a common cause of liver disease in Australia. Over the last six years, there have been approximately 10 to 30 cases of hepatitis E diagnosed and reported to the government each year.
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E
ABC D Overview
Hepatitis E is caused by an infection with the hepatitis E virus. Hepatitis E does not develop into a chronic (life-long) infection, however, the infection is more severe among pregnant women in the third trimester. In general, people with hepatitis E recover with no long lasting illness. There is a very small chance (1â&#x20AC;&#x201C;4%) of developing sudden and life threatening liver disease. Pregnant women who become infected with hepatitis E are at greater risk of severe illness and liver failure and 20% may die because of
Travellers to developing countries are advised to take precautions against drinking contaminated water (including beverages with ice), eating uncooked shellfish and uncooked fruits and vegetables that are not peeled or prepared by the traveller. They also need to be aware of personal hygiene including hand washing.
Prevalence The highest rates of hepatitis E infection occur in regions where there is poor sanitation and sewage management that promotes the transmission of the virus. For example, hepatitis E is common in Central and South-East Asia, North and West Africa and Mexico. Hepatitis E is not a common cause of liver disease in Australia. Over the last six years, there have been approximately 10 to 30 cases of hepatitis E diagnosed and reported to the government each year.
the infection. However, this occurs mainly
Transmission
in developing countries where hepatitis E
Hepatitis E is found in the faeces and
is very common and where there is limited
spread via the faecal-oral route, similar to
healthcare for pregnant women.
hepatitis A. Drinking or eating contaminated
Diagnosis of hepatitis E is performed by a blood test that detects either the antibodies or the virus itself. The blood tests needed to diagnose hepatitis E are not widely available. At present, no vaccine exists
water or food could result in infection. Person-to-person transmission of hepatitis E is uncommon. There is no evidence that hepatitis E is spread sexually or through blood or blood product transfusion.
for the prevention of hepatitis E, and there
Symptoms
is no treatment: as it is caused by a virus,
Symptoms may include fever, weakness,
antibiotics are of no value in the treatment of
fatigue, loss of appetite, nausea, vomiting,
the infection. Bed rest and fluid replacement
and jaundice (yellowish eyes and skin, dark
is recommended.
urine and pale-coloured faeces).
2014 Mark Farmer Memorial Award This issue’s theme ‘Seizing Opportunities’ provides a very apt introduction to our report on the 2014 Mark Famer Memorial Award – where we learn how amazing people take the initiative to reach out and get involved.
The Award is one of the many ways that Hepatitis Victoria seeks to recognise and also empower the affected community.
T
he Award is made annually to acknowledge and celebrate
2014 Nominees: Joel Murray, Ross Williams (holding award), Jane Little, Chris Stassinis, Justine Block. President of the Board Kieran Donoghue, CEO Melanie Eagle and Mark Farmer Memorial Award Selection Committee Member Catina Eyres
individuals with hepatitis C who have: shared their knowledge
and experience to help others in the community, increased community knowledge and understanding of viral hepatitis, and demonstrated positive use of self-management principles in their daily life. The Award was named in honour of Mark Farmer, a former Hepatitis
The Board of Hepatitis Victoria is very grateful to Ross for his enormous and ongoing contribution to our work and for his awareness raising activities in the community, and was delighted to award him with the 2014 Mark Farmer Memorial Award.
build awareness.
The Ross Williams Story
The Award is one of the many ways that Hepatitis Victoria seeks to
Ross in acknowledging the award said: “I was delighted to
Victoria Board Member, who did so much to champion the issue and
recognise and also empower the affected community. Other examples are our Hepatitis Heroes (www.hepheroes.com.au), our Community
receive the 2014 Mark Farmer Memorial Award as it topped off a memorable year for me with Hepatitis Victoria. I was still being
Advocates (http://www.hepvic.org.au/communityadvocates) and our
treated for hep C late in 2013, but I knew I was clearing the virus
Public Speakers Bureau (http://www.hepvic.org.au/publicspeakers).
and I felt ready to take on something beyond the important but
The 2014 recipient is Ross Williams. Ross will be known to many of you. He has a long history of dealing with and successfully managing hepatitis C having undertaken four Interferon based hepatitis C
rather monotonous task of recovering my health. I wasn’t quite sure what I had to offer Hepatitis Victoria, but when I phoned and spoke with Gary Sattell he was keen to get me involved,
treatments, the final one successfully clearing hepatitis C. He was
so I came in and got started.
referred to the liver transplant unit in 2007 and received a liver
I felt that I had lost so much of my life to hep C, and that even
transplant in January 2008. At this time he had not yet cleared the
with the support of family and friends it felt like a solitary battle.
virus and it attacked his transplanted liver, resulting in him being
Volunteering at Hepatitis Victoria gave me the chance to retrieve
re-listed for transplant in 2010, and receiving a second liver
something of that loss, to take part in a larger struggle, and at
transplant in June 2011.
the same time, I found myself working with a warm, supportive
Since then Ross has become a highly valued and esteemed supporter
organisation where I made new friends and felt very strongly valued.
of Hepatitis Victoria and our work in the community. Former recipient
The Mark Farmer Award goes to a new person each year, but
of the award, Karen Jehn, nominated for the Award Ross saying:
really it recognises a whole community of people working in the
“I feel Ross shows remarkable courage and amazing selflessness,
field of viral hepatitis. When I heard all the other nominations
devoting much of his time in his efforts to increase community
I felt proud to be in such good company.
understanding and advocating for people affected by viral hepatitis. On a personal level he is a very generous and gentle person and I feel his story is inspirational, showing his great resilience and perseverance. He is certainly a shining example of triumph over adversity”, she said.
Yet, although I’m very pleased to have received the award, what really sticks with me is how much I’ve gained and still am gaining from working with all the people at Hepatitis Victoria.”
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New Hep Hero Turn On, Tune In and Drop Out! We were gonna change the world. In 1971 I lived and co-managed a Conceptual Art Gallery named The Yellow House in Potts Point, NSW. The gallery was huge and each room was a ‘happening’ or an experience, painted in psychedelic motifs by Op Art artists. Life was constantly entertaining, an ongoing roller coaster of weird and wonderful and often talented people passing through the doors and an ongoing pot-smoking, psychedelic LSD party. We lived by such rallying cries as ‘Up The Revolution’, ‘Down With The System’, and I took part in a few gay rights and women’s liberation marches. I started to straighten up in my early 30s after having a baby and getting married. In the 90s, I was diagnosed with hepatitis C. I freaked. I thought I was going to die – soon. But denial kicked in and I didn’t seek treatment for another 21 years. I had sober periods with relapses during these years, when I used pot and drank quite a bit. I have now been clean for Seven years, and happily so. I probably had hep C for 41 years before I did anything about it. I’ve had two rounds of treatment, for a total of two years, finally finishing last July – and clearing the virus. Side effects were and still are to a degree, hideous. My hair fell out, my skin itched, my eyes felt sore, watery and irritated. I survived on Sustagen and frozen and take away meals for all that time,
Kate Bindu I
am a Hep Hero because: I hung in there with my hep C meds and refused to “say die”!
“I saw the best minds of my generation destroyed by madness... starving hysterical, naked... dragging themselves through the streets at dawn looking for an angry fix, angel-headed hipsters burning for the ancient heavenly connection to the starry dynamo in the machinery of the night... who, hollow-eyed and high, bared their brains to Heaven and, staggering on tenement roofs, saw angels illuminated...” * I had been present a couple of times when people around me were shooting up heroin and I had resisted having a taste, mindful of my mother’s dire warnings and horror stories. One night in 1972, I was with my hippie mates. I was feeling down and Bruce came over and said: “hey babe, this’ll blow you right into 7th Heaven”. I succumbed and gave him my arm. He had the syringe ready, full of Pethidine. He was right – it was bliss. It was a one-off situation, but the seed was planted. A year later, when offered a shot of almost pure Heroin I said “Yes”, and was hooked straight away. It was the age of drug experimentation for reckless youth. We didn’t use clean disposable needles in those days, they weren’t so easily available so we just rinsed our glass ‘fits’ and used again or shared with others. In the mid-sixties I had embraced the youth explosion, the Revolutionary Counterculture. I had a groovy uncle sending me underground magazines from London so I was more than ready to
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Changes... that I would like to see happen: Aftercare when treatment finishes. Physical and emotional health can be affected for quite awhile after treatment. too exhausted and depressed to bother to cook. I didn’t drink or take anything for the whole two years of treatment. I think this was the wisest choice. I don’t know how I hung in there, but I did. I was largely supported by living for five years in yoga ashrams in India, NSW and finally Victoria. I learned to be a yoga and meditation teacher and how to live a healthy life and to deal with stress and depression, which hasn’t returned since my hep C treatment finished. Changes regarding hep C treatment that I would like to see happen: Aftercare when treatment finishes. Physical and emotional health can be affected for quite a while after treatment. Re-adjustment to life after meds, and for me after ashram life, can be hard, regardless of the outcome. People usually need a period of health care, counselling and ongoing support. Unfortunately, this does not usually happen in my area. Nevertheless, I did eventually pick up the phone to call the Hep Vic Helpline and they are wonderful. Very supportive. I now feel ‘a part of’ rather than ‘apart from’. I am considering starting a hep C support once I feel up to it. I live an hour and a half out of Melbourne.
Kate’s message to others: “Considering that liver cancer is the fastest growing cancer in the Western World, I urge everyone living with hepatitis C to bite the bullet and front up for treatment. Yes, wait for the new and better meds but please don’t wait too long if you are, like me, a recovered Wild Child baby boomer. Life is precious and we don’t have much time. Namaste.” * Excerpt from Allan Ginsberg’s Howl and Other Poems, published in 1956 by City Lights Bookshop, California.
New Hep Hero is perfectly healthy, willing and able to work if only someone would give her a job. She showed me the website of a hepatitis B support group, the home page showing a group of people with their backs to the camera to emphasise the stigma and dangers of showing their faces. I met a senior health official in Hanoi who spoke passionately about family. He was one of five boys - all four of his siblings had died from the effects of hepatitis passed to them by their mother at birth. He asked “Why not me? Why don’t I also have hepatitis? I don’t know, perhaps there is a reason”. In this way, for the 2000 decade, I learnt about hepatitis, doing every_ thing I could internally to get funding - both from the pharmaceutical company and its philanthropic foundation, for emerging patient support groups and advocacy organisations that were trying to increase awareness of viral hepatitis. But funding was limited, the groups were small, disconnected and their struggle was great. The issues and problems associated with viral hepatitis are so large and universal that it really is only governments that are in a position to undertake the real public health communication and reform that is needed. So perhaps it was the perfect storm, when in 2010, I was simultaneously offered redundancy and the opportunity to help a group
Jennifer Johnson I
am a Hepatitis Hero firstly, to help spread the word about the devastating impact that viral hepatitis can have on those who
are infected if they are not able to access proper medical care; and secondly, as a tribute to those very people living with viral hepatitis they are the real heroes. I worked in the early 1990s as a researcher, and later a policy adviser, to various federal politicians in Canberra covering health and social policy. After a decade in Canberra, I was offered a job heading up policy and government affairs for a pharmaceutical company, firstly in Melbourne but later moving to Singapore to cover the Asia Pacific region. As the company was preparing to launch a new anti-retroviral product for hepatitis B part of my job was to understand about the policy and social environment in relation to hepatitis B. This was a huge revelation to me! I had no idea about this disease and the enormous lack of understanding about its long term impacts on liver health. I actually felt personally embarrassed that, despite being tertiary educated, with a decade working in health policy, I had
Hepatitis is not a death sentence... for those who do not know their status, if you think you have any risk factors, get tested! of clinicians and other experts set up a regional Asia Pacific group to focus on policy advocacy for viral hepatitis. I continue to work towards the long term goal of eradicating hepatitis from the region as I know the value of advocacy and I can see that we are starting to get some traction in this most challenging area. Because hepatitis does not usually have any particular symptoms until the advanced stages, people can go for years without knowing they have it. During this time, as the virus continues to damage the liver, they do not have the opportunity to seek medical advice and treatment if they need it, nor are they able to take precautions to avoid passing it on to others. We need to let people know that there are treatments that can stop the damage caused by the virus, and in the case of hepatitis C, a cure. We need to increase knowledge and understanding in the general population to reduce the fear that is often driven by ignorance.
Jennifer’s message to others:
no knowledge... and if I was so ignorant, what did this say about the
“Hepatitis is not a death sentence, but you must take action to
understanding and knowledge of the condition, throughout Asia
ensure you understand your status and seek regular medical advice
and the world?
as to whether or not you need treatment. For those who do not
I spoke to many people living with hepatitis - a young girl in Beijing who very firmly told me that she is a carrier and not a patient - that she
know their status, if you think you have any risk factors, get tested!”
11
Introducing SKiNK
Your Skin, Your Ink, Your Tattoo Tales
W
ith 60% of newly acquired
hepatitis C infections occurring
in young people aged 15–29, getting
prevention and safety messages across
SKiNK was introduced to the public at the Sydney Road Street Party on 1 March.
in a meaningful way is not always as easy as telling them: ‘Don’t share a bloody thing’.
Young people face many barriers to
preventing viral hepatitis, such as limited access to sterile equipment for injecting drug use and exposure to unsafe
tattooing practices. The recent rise in
‘home’ tattooing, due to the availability
of tattoo guns online for as little as $50,
and growing popularity of getting tattoos
overseas has contributed to an increase in unsafe tattooing practices.
Enter SKiNK:
Your Skin, Your Ink, Your Tattoo Tales (a Hepatitis Victoria Production and supported by the Telematics Trust)
SKiNK offers the public a platform to
share photos of their tattoos and the
stories behind them. SKiNK aims to create a conversation about tattoo art, tattoo culture, and safe tattooing practices.
Get involved /skinktales
Facebook App
A facebook app allowing the public to enter their tattoo stories for public voting will be launched within the next few months in the lead up to World Hepatitis Day on July 28. Like our page at www.facebook.com/skinktales to keep in the loop!
12
As you can see, our Hepatitis Hero John Kenney proved to be a great drawcard with over 200 people queuing up to have their photo taken with him. In addition to the SKiNK concept being launched to street party attendees, info on safe tattooing and other health messages were distributed widely, and close to $300 was raised from gold coin donations to support the work of Hepatitis Victoria!
Getting involved is easy: take a photo of your tattoo and post it, along with your tattoo ‘tale’ on the SKiNK facebook page at: https://www.facebook.com/skinktales Here are a couple of examples of recently posted ‘tales’: ALICIA This is my latest and probably favourite tattoo (for now!) It is based on a painting I love
and I was really surprised with how it turned out. I had it done in New York a couple of years ago after a friend recommended a particular artists who is great at these types of tattoos.
It brings back a lot of memories for me of wandering around the Bowery, in the sweltering heat – thinking I was super cool with my new ink! I have a few tattoos now, and it’s nice to
see how they have progressed both artistically and as a reflection of my growth personally. For me they represent a timeline of my life. And I am just about ready for my next one!
KAREN My tattoo of my Unicorn has very special meaning for me. It was my first tattoo and I got it
done at a tattooist in Seymour. I got this tattoo done the day after my Mum passed away in
1999. My sister, brother and brother in-law all went down to the tattooist to get tattoos as a family bonding exercise to remember my mother.
I didn’t know what I wanted to get done, but being a unicorn collector, it was a simple choice
and picked out this tribal style tattoo from the wall. It reminded me of getting my first unicorn as a child. My mother took me down to spend my $17 pocket money I had saved up. In the
store was a brass unicorn and it was exactly $17 and that was my first of hundreds of unicorns I collected over the years. I still miss my mother greatly, especially when I need advice about life, but I keep her voice of wisdom in my heart and mind and I always remember her when I look at my tattoo.
GRAEME This was my first tattoo. I did it in 1973 when I was eighteen. I was naïve about the possibility
of getting a blood-borne virus, it was a few mates around using a matchstick, a sewing needle
and some cotton thread and some Indian black ink to create homemade tattoos. It could have been my initial risk at contracting hepatitis C, so I think it was pretty stupid now in hindsight. So think before you ink, and go to an authorised tattooist to get a tattoo.
13
Parliamentary Inquiry into hepatitis C in Australia A
s many will know, the federal government announced at the end of
• Tragically, the most common area
of lives: think about the Quit campaign,
where discrimination is experienced is
Slip, Slop, Slap. Look at our road safety
last year that the House of Representatives
by health professionals themselves.
campaigns: 1,500 people die each year
Standing Committee on Health would
This problem has to be comprehensively
on our roads. Australia has recognised
undertake an investigation into hepatitis C
addressed, with widespread and
and acted to end this. Millions of dollars
in Australia. It is our hope that the Inquiry
ongoing workforce development
have been poured into road safety
will result in an improvement in the policy and practical response to hepatitis C.
• It is this same stigma that has actually prevented the people directly affected
and research, and awareness raising campaigns, over many years. Yet half this number dies each year in Australia
Public hearings were held in Melbourne
from standing up and demanding
and Sydney at the end of January. Hepatitis
the health response they need and
Victoria and a number of our Community
deserve. “When you do not hear people
Advocates appeared at the Melbourne
clamouring at your doors, with placards
hearing. The key points presented to the
outside parliament, and making media
Minister whose courage and foresight
panel included:
appearances, do not think it is because
and drive caused Australia to be
Waiting times for treatment in specialist
there are not hundreds of thousands
recognised as a leader in halting the
clinics are too long and access to
of people who care desperately.
AIDS epidemic. This Government can
treatment for those in rural areas is
Know that they are fearful of coming
go down in history as the Government
inadequate. More efficient treatment and
forward, because of the entrenched
that had the foresight to end this silent
care models must be pursued within the
discrimination and stigma that they know
killer – the hepatitis C epidemic.
primary care system if treatment levels
only too well.”
•
•
and health outcomes are going to improve
comparison?
• Just as Neil Blewett was the Health
The information and stories put forward by the ‘industry’ and community members
developing and implementing health
were very powerful. A full transcript of the
might seem expensive, they can reverse
education and behavioural change
day’s proceedings can be found at: http://
the escalating impact of hepatitis C on
campaigns that have saved thousands
www.aph.gov.au/Parliamentary_Business/
While the upfront cost of new treatments
the community and economy
• There needs to be a
focus on investing in/ implementing early intervention and prevention initiatives, rather than playing catch up further
Committees/House/Health/Hepatitis_C_in Australia/Public_Hearings.
Following are a few of the many thoughtful comments and insights that were received:
down the track which
“I should have been followed
results in much higher costs
up in the period between my
• We know that nearly 70% of our stakeholders feel they
first diagnosis and now. When I was diagnosed in 2002 I was
receive inadequate support
not eligible for treatment on the
to manage their hepatitis
PBS because my liver was OK.
C. We know that they feel
And now that it is not OK, my
isolated, marginalised,
chance of clearing the disease
discriminated against and
is significantly reduced, both
helpless. Every day we see
because of disease progress,
campaigns and messages in
age and because I am now post
other contexts highlighting that
menopausal.”
bullying won’t be tolerated, that workplace harassment won’t be
14
• Australia has a great track record of
of hepatitis C. What are we investing in
“Why is so much support and
tolerated. And we should not tolerate
sophisticated free medical treatment
people feeling fearful and contaminated
available to me for my breast cancer but
because they have a virus.
so little for my Hep C?”
Hepatitis Victoria lodged its submission to the Parliamentary Inquiry on 27 February. Following is the executive summary of the document. A copy of this full submission can be found on our website (www.hepvic.org.au). EXECUTIVE SUMMARY This is a watershed moment in Australia’s
combination of strategies to counteract this
response to hepatitis C. By combining
rapidly growing health disaster without delay.
prevention and testing initiatives, along with the new direct acting antiviral treatments, we have the potential to cure those with hepatitis C, transforming this epidemic into a rare disease. Such a significant moment can only be
Provided programs are comprehensively evaluated and flexible enough to adapt to the changing needs of the community, there is no need to withhold action. We have enough information to implement successful programs
compared with the point at which a commitment immediately. Waiting until we ‘have all the was made to respond to HIV in the early years
answers’ is a disservice to both those with,
of the epidemic. Here, the swift implementation
and at risk of, hepatitis C. It is also a discredit
of a whole of government approach involving
to those internationally recognised research
suitably resourced prevention, testing and
organisations and world health organisations
management services, sustained public
that have provided recommendations for
awareness campaigns, and addressing
action, supported by rigorous studies and
stigma and discrimination, led to the HIV
modelling.
epidemic being controlled and many lives saved.
Input from Hepatitis Victoria’s members, collaborators and stakeholders has been
We have the same choice now with hepatitis
utilised in this submission to contextualise
C. With the new therapies on the horizon
the discussion, reframing it to highlight the
and finally, a focus on hepatitis C through
personal impact and cost of hepatitis C and
the initiation of a Parliamentary Inquiry, we
identify the priorities for action most needed by
can progress beyond the poorly resourced,
those most affected. The personal perspectives
minimally effective approach Australia has
are absolutely vital in any discussion
maintained until now. We can eliminate
about hepatitis C, to ensure the response
hepatitis C, save lives and save our precious
is appropriate and relevant to those most
health dollars.
affected. This submission also reinforces the
The approach must incorporate a range of prevention, testing, management and treatment
existing research conducted by organisations, with which Hepatitis Victoria collaborates.
strategies. As articulated by a Hepatitis Victoria
On behalf of those living with, or affected
member who spoke to the Standing Committee
by hepatitis C, Hepatitis Victoria calls for an
on Health on 21 January 2015:
investment in prevention, testing, treatment and
“By combining prevention and testing initiatives
management of hepatitis C that is proportional
along with the new treatments we have the
to the significance of this neglected illness.
potential now to transform this epidemic into a
The Australian Government, through this
rare disease.”
commitment, has an opportunity to be the
Despite there being some unknowns, there is already enough research from Australia and internationally to effectively implement a
Government applauded with initiating the virtual elimination of hepatitis C and preventing unnecessary deaths.
Parliamentary Inquiry Survey In preparing our submission to the Parliamentary Inquiry, including ensuring our community’s views were represented, Hepatitis Victoria undertook an online survey of community members. We were very pleased to receive over 100 responses, which far exceeded our expectations. Importantly the thoughtful and informative feedback helped us to frame a powerful submission paper. One aspect of the survey results that deserves attention is that almost all responses included ‘stigma’ and/or ‘discrimination’ no matter what they related to, clearly demonstrating the major impact this has on people living with viral hepatitis. (See pages 16-17). Almost all respondents agreed that health workers delivering the diagnosis required better training about stigma and discrimination associated with hepatitis C, as well as counselling skills in order to encourage people to get tested. The lack of appropriate information about viral hepatitis and available services were both identified as lacking at the time of diagnosis. This situation was considered by most as a further deterrent (along with stigma and discrimination) to seeking follow-up management and treatment. Similarly, almost 70% of respondents mentioned they have not received appropriate support to manage their hepatitis C, with one respondent highlighting the difference between the level of support she was offered for breast cancer compared to hepatitis C. In regards to treatment and care of hepatitis C and opportunities for improvement, the key issues identified were:
• costs associated with loss of productivity • travel expenses - highlighting the need
to improve access to treatment
• the need for GP prescribing and
monitoring for hepatitis C treatment and management.
15
© Cameron Davidson/Corbis
Hepatitis Victoria’s submission
Parliamentary inquiry Survey results
Following is the summary of survey responses. Thank to everyone who contributed, the information you provided was invaluable to our submission:
Reason for getting tested for hep C
Gender
(self-referred) 23.5%
AWARE OF RISKY BEHAVIOUR ROUTINE CHECK-UP 39%
67%
FOUND IN TEST FOR OTHER CONDITIONS 6% OTHER 8%
Timeframe between possible exposure until diagnosis (years)
33%
FEMALE
SYMPTOMS/FEELING UNWELL 23.5%
MALE
Most mentioned a combination of lack of knowledge of the individual and lack of
65%
appropriate information provided by the health worker giving the positive diagnosis.
<5
22% 40–59
13% 60+
Barriers to getting diagnosed Most answers included travel time and cost
6%
18%
Preferred place to access testing Respondents agreed that it would be most convenient to access it at GPs and community health centres with appropriate counselling and referrals.
the GP or respective health professional
Barriers to care/treatment
Recommendations to improve diagnosis Almost all respondents nominated better training of health workers about discrimination and how to be non-judgmental, (described by one as
OTHER
20%
fear of getting a positive result and getting to prescribe the right test.
WORK IN ANOTHER CAPACITY WITH PEOPLE WITH HEPATITIS C
HEALTHCARE PROVIDER AFFECTED OTHER
HAD HEPATITIS C AND CLEARED IT
LIVING WITH HEPATITIS C
15%
16
10–20 20–30 30+ UNSURE
(particularly those from regional areas);
Relationship to hep C
38%
...however most agreed that they were the few lucky ones that got appropriate care.
Reasons for no follow-up after diagnosis
Age group
20–39
Received appropriate follow-up after diagnosis
8%
“hep C friendly” services). Most agreed that it is crucial to improve
Time (travel time and waiting lists) and cost were the main barriers identified
counselling skills of workers and were
by respondents. Most also mentioned
particularly concerned about stigma and
stigma and discrimination faced
discrimination at time of diagnosis.
within the health system.
Costs incurred when accessing care/treatment (multiple answers permitted)
Recommendations regarding improvements to care/treatment Most common answers included easier
51%
TRAVEL
66%
MEDICINES
access to treatment/care via GPs (particularly supported from those in rural
Do you think better knowledge at the time would have prevented you from getting hep C
60.8%
areas where there is limited specialist availability) and the addition of more staff in liver clinics to reduce waiting hours and improve service. Also follow-up care and support after treatment as symptoms continue.
36% MEDICAL TESTS EXAMINATIONS
68%
40% DOCTOR/ SPECIALIST FEES COST ASSOCIATED WITH LOSS OF PRODUCTIVITY
Respondents nominated the loss of income because of their inability to work as the key cost associated with care/treatment.
13.7%
25.5%
People that receive appropriate support to manage their hep C Recommendations to raise awareness about hep C
67.5%
32.5%
Common answers were advertising and social media campaigns and to include hep C/BBV in school curricula and target older (high-risk) populations.
Social and psycho-logical Level of know-ledge Recommendations impact associated with around hep C prior to to improve care/treatment prevention diagnosis of hep C STIGMA 82% ANXIETY 74% DEPRESSION 68% ISOLATION 60%
DISCRIMINATION 54% OTHER 18%
Possible long term benefits of receiving early care/treatment
VERY LOW 52%
E.g. only knew the name and that is was something to do with the liver).
LOW 18%
E.g. also knew some ways of prevention/
Answers included greater public awareness, more NSPs in the community and in prisons, and education of BBV at schools.
transmission but unclear about them).
SUFFICIENT 16%
E.g. confident with prevention/transmission routes, knew it can be a chronic condition and if unattended can lead to liver damage)
Recommendations to increase treatment uptake
HIGH 14%
Improving access to better treatment
E.g. confident with prevention/transmission
options (via PBS and campaigns that
would have greatly improved their quality
routes, knew it can be related to cirrhosis
inform the community of its availability)
of life, particularly in relation to isolation
and liver cancer and some knowledge
and access to treatment in community
and mental health.
around treatment options).
settings (via GPs, etc).
Most respondents agreed that having had the chance to receive early care/treatment
17
Workforce Blank pageDevelopment Training and Workshops B-informed
Hepatitis Victoria HepConnect Training
Bloody Serious Facts
Tuesday 24 March 2015
Tuesday 14 April 2015;
Wednesday 13 May 2015;
9.30am - 12.30pm.
6.30pm to 8.30pm.
9-30am to 1-00pm.
North Richmond Community Health Centre,
Hepatitis Victoria,
Hepatitis Victoria,
23 Lennox Street, Richmond
5/200 Sydney Road, Brunswick
5/200 Sydney Road, Brunswick
B-informed is an introductory course targeted
HepConnect is a service provided by
at health and community workers wishing
Hepatitis Victoria, providing people with
Bloody Serious Facts is a workshop designed
to improve their understanding of hepatitis
viral hepatitis the opportunity to discus their
B. This course has been developed in
experiences with a trained peer volunteer.
partnership with Hepatitis Victoria,
The next training program for new and
St Vincent’s Hospital and the Multicultural
existing HepConnect volunteers will be held
Health and Support Service. The course
at Hepatitis Victoria on Tuesday 14 April
covers the basic facts about hepatitis B
2015. If you are living with viral hepatitis
management and care of people living with
testing, transmission and treatment, and the
and would like to assist others in similar
chronic hepatitis C.
resources and support available to assist
situations, then why not become a part of the
The course is free to Hepatitis Victoria
health workers and the affected communities. HepConnect team. Further courses are scheduled for 26 May
for drug and alcohol workers, community health staff, prison staff, welfare workers, health students and anyone working with people who are at risk of or affected by hepatitis C. Topics covered will include transmission risks, improved treatments,
members or $25 per person for non-members.
2015 and 25 August 2015.
To further discus the HepConnect program
For bookings and further enquiries call (03) 9380 4644 or email admin@hepvic.org.au
Further enquiries and bookings on 9418 9929
and opportunities for peer volunteering, call the Hepatitis Infoline on 1800 703 003 or
Further sessions will also be conducted later
email info@hepvic.org.au
in the year.
or email enquiries@ceh.org.au
l o r t n o C e k Program Hep C: Ta Some topics to be covered are: • Better management of hep C and liver-related health problems. • Making healthy lifestyle changes • How to achieve your health goals. • Treatment and dealing with side effects. Hep C: Take Control is a successful 6-week chronic disease self management group program run by Hepatitis Victoria. In a supportive group environment, participants will work together to share skills and develop strategies to better manage and improve their health and wellbeing.
Book early for your place in the next course Starting: Wednesday 8 April 2015 Ending: Wednesday 13 May 2015 Time: 6 – 8 PM Venue: Hepatitis Victoria,5/200 Sydney Road, Brunswick To register call the Hepatitis Infoline on 1800 703 023 or email admin@hepvic.org.au
18
GET THE REAL STORY! FOR YOUR NEXT EVENT!
BOOK A SPEAKER
The Hepatitis Victoria Public Speakers Bureau is a highly dedicated group of people affected by hepatitis B and hepatitis C who seek to educate the wider community on the issue of living with viral hepatitis by sharing their personal stories. Our speakers are the human face of viral hepatitis and help to reduce fear, myths, stigma and discrimination. Speakers will tell their personal story around viral hepatitis and how it has impacted on their life. Common discussions around viral hepatitis include:
• Experiences with diagnosis and treatment •
Experiences with the health sector and/or health care professionals • Community attitudes, stigma and discrimination • Disclosure • Being healthy with viral hepatitis.
HOW TO BOOK A SPEAKER Bookings are open to all community groups, not-for-profit agencies, commercial and organised training or conferences. To discuss bookings or for more information contact: Marina Mazza Community Participation Project Officer on 9385 9106 or: marina@hepvic.org.au
Opportunities for New Treatments The latest on the PBAC process
T
he Pharmaceutical Benefits Advisory Committee (PBAC) the group that makes recommendations to Government on
medications to be subsidised by the Federal Government through the Pharmaceutical Benefit Scheme (PBS) - will this month be considering submissions in support of the new medications for
ABC: Giulio Saggin, file photo
hepatitis C treatments.
Members of the public have had the opportunity to provide input through the lodging of individual submissions. Hepatitis Victoria has, as a member organisation of Hepatitis Australia, had input into the development of Hepatitis Australiaâ&#x20AC;&#x2122;s submission. We agree that making these new treatments widely available is imperative to improving the lives of the estimated 233,000 Australianâ&#x20AC;&#x2122;s living with chronic hepatitis C. Following is a summary of our statement of endorsement: We are aware of the critical need for all people living with chronic viral hepatitis to have access to the new treatments that are available, and which will change the prospects of effective cure from approximately
50% to over 90%, and the huge personal and economic and social cost of people not having access to effective treatment. We specifically emphasise the need for access to be available for all, rather than on a restricted basis â&#x20AC;&#x201C; noting that other factors such as lack of awareness by the affected community and health practitioners, and the lack of access to services, will inevitably mean that there will be a phased uptake in the new treatments even when approved. Hepatitis Victoria is committed to the principle of equal access for all and (just as does not exist with any other comparable condition) we do not believe it is ethical to deny anybody their right to a cure for a life threatening condition. Neither is it cost effective given the productivity and health system implications of providing a cure compared with the cost of dealing with the consequences of liver disease. In its submission Hepatitis Australia stated: Many people have been living in hope and anticipation of access to the new, highly effective and more tolerable treatments. In many cases the decision to wait for the new treatments was made in consultation with their treating doctor. For some people the chance to reclaim their health is fast running out. Based on an extrapolation of current estimates of disease progression there will be 30 people each week that will progress to decompensated liver disease, or they will develop liver cancer or they will die from complications of their HCV infection. It is critical that these new hepatitis C medicines are made available on the PBS immediately to avert these adverse health outcomes. There is no doubt delay in the PBS approval process will result in a mounting death toll. We hope the PBAC listens and acts accordingly!
19
Liver clinics Liver clinics and liver specialists
CLAYTON
GEELONG
Southern Health Monash Medical Centre 246 Clayton Road, Clayton Contact: (03) 9594 6035 Fax: (03) 9594 6925
Geelong Hospital
In most cases a referral is faxed to the hepatitis treatment service. The hepatitis treatment service will generally not discuss your treatment options with you until after they have received a referral from your GP.
CRANBOURNE
GIPPSLAND
This list of hepatitis treatment services includes clinics that are known to Hepatitis Victoria. Not all possible services are listed and there may be others in your local area.
EAST RINGWOOD
To access public hepatitis C treatment services a referral from a GP is needed.
ALBURY Albury Community Health Centre – Hepatitis Clinic 596 Smollett Street, Albury Contact: (02) 6058 1800 Fax: (02) 6058 1801
BAIRNSDALE Bairnsdale Regional Hospital Bairnsdale Regional Health Service Specialist Consulting Rooms 122 Day Street, Bairnsdale Contact: (03) 5150 3478 Fax: (03) 5150 3404
BALLARAT Ballarat Base Hospital Drummond Street, Ballarat Contact: (03) 5320 4211 Fax: (03) 5320 4097
BALLARAT Ballarat Community Health 12 Lilburne Street, Lucas Contact: (03) 5338 4500 Fax: (03) 5332 6617
BENDIGO Bendigo Health Cnr Arnold and Lucas Streets, Bendigo Contact: (03) 5454 8422 Fax: (03) 5454 8419
BOX HILL Box Hill Hospital 51 Nelson Road (First Floor Blue Lift), Box Hill Contact: (03) 9895 3333 (ask for OPD) Fax: (03) 9895 4852
20
Cranbourne Integrated Care Centre 140-154 Sladen Street, Cranbourne Contact: (03) 5990 6789 Fax: (03) 5990 6328 Maroondah Hospital (Eastern Health) Davey Drive, Ground Floor Outpatients, East Ringwood Contact: 1300 342 255 Fax: (03) 9871 3202
ELTHAM North Eltham Medical Centre Dr Tony Michaelson Weekly visiting Hepatitis C Nurse Rhonda O’Malley 1170 Main Rd, Eltham Contact: (03) 9439 2222 Fax: (03) 9439 3662
EPPING Northern Hospital 185 Cooper Street, Epping Contact: (03) 8405 8000 Fax: (03) 8405 8524
FITZROY St Vincent’s Hospital 35 Victoria Parade, Fitzroy Contact: (03) 9231 3475 Fax: (03) 9231 3489
FOOTSCRAY
Bellarine Street, Geelong Contact: (03) 5246 5117 Fax: (03) 5221 3429 Central Gippsland Health Service 155 Guthridge Parade, Sale Contact: (03) 5143 8600
HEIDELBERG Austin Hospital 145 Studley Road, Heidelberg Contact: (03) 9496 2787 Fax: (03) 9496 7232
West Heidelberg Banyule Community Health Centre Hepatitis C Outreach Clinic as part of Austin Health. Dr Daljean Sandhu, weekly visiting Gastroenterologist and Hepatitis C Nurse. 21 Alamein Road, West Heidelberg Contact: (03) 9496 6846 Fax: (03) 9496 2732
MAROONDAH Maroondah Hospital (Eastern Health) Out-Patients, Ground Floor, Davey Drive, Ringwood East Contact: 1300 342 255 Fax: (03) 9871 3202
MILDURA Mildura Infectious Diseases Unit 234 Thirteenth Street, Mildura Contact: 0408 581 781
Western Hospital Gordon Street, Footscray Contact: (03) 8345 6291 Fax: (03) 8345 6619
PARKVILLE
FRANKSTON
Contact: (03) 9342 7212
Peninsula Liver Clinic 141 Cranbourne Road, Frankston Contact: (03) 9770 0139
PRAHRAN
Royal Melbourne Hospital Corner Royal Parade and Grattan Streets, Parkville Fax: (03) 9342 7277 Alfred Hospital Infectious Diseases Department 99 Commercial Road, Prahran Contact: (03) 9076 2359 Fax: (03) 9076 2194
Contacts SANDRINGHAM Bayside Hepatitis Clinic (Alfred Hospital) 193 Bluff Road, Sandringham Contact: (03) 9076 2259 Fax: (03) 9076 2194
SHEPPARTON Goulburn Valley Health Centre
Community-based hepatitis C treatment services
St Kyrollos Family Clinic
Community based treatment clinics have
Contact: (03) 9386 0900
been developed to enable more people to access treatment in their local communities.
Dr Ashraf Saddik Monthly visiting Hep C Nurse 2A Moore Street, Coburg
Werribee Mercy Hospital Consulting Suites
Barkly Street Medical Centre
300 Princess Hwy, Werribee
Contact: (03) 5832 3600
Dr Elizabeth Leder
Contact: (03) 9288 2171
Fax: (03) 5831 6032
Dr David Iser visits monthly
Fax: (03) 9288 3596
50 Graham Street, Shepparton
SPRINGVALE Springvale Community Health
60 Barkly Street, St Kilda Contact: (03) 9534 0531
Primary health care centres (for people who use drugs)
55 Buckingham Street, Springvale
Cohealth (formerly North Yarra
Contact: (03) 9594 3088
Community Health)
Fax: (03) 9594 2273
75 Brunswick Street, Fitzroy
TRARALGON
Contact: (03) 9411 3555
Access Health
Latrobe Regional Hospital
Cranbourne Integrated Care Centre
Primary health care and needle syringe
Private Consulting Suites 3 and 4
Hepatitis Outreach treatment clinic
Princes Highway, Traralgon West
140-154 Sladen Street, Cranbourne
Contact: (03) 5173 8111
Contact: (03) 03 5990 6789
Fax: (03) 5173 8097
Fax: (03) 03 5990 6328
WARRNAMBOOL
Gateway Community Health
Warrnambool Physiciansâ&#x20AC;&#x2122; Rooms
155 High St, Wodonga
St John of God
Contact: (02) 6022 8888
Warrnambool Hospital,
Fax: (02) 6024 5792
Health Works
Health Works
syringe program
Suite 4, Wentworthh Street Consulting Rooms, Warrnambool Contact: (03) 5562 9444 Fax: (03) 5561 2699
WODONGA Murray Valley (Private) Hospital Nordsvan Drive, Wodonga
4-12 Buckley Street, Footscray
Primary Needle Syringe Programs
program for marginalised/street based injecting drug users, street sex workers and people experiencing homelessness. Hepatitis C information, support and treatment 31 Grey Street, St. Kilda Contact: (03) 9536 7780
Primary health care and needle Hepatitis C information, support
Contact: (03) 9362 8100
and treatment
Living Room
4-12 Buckley Street, Footscray
7-9 Hosier Lane, Melbourne Contact: (03) 9945 2100
Contact: (02) 6056 3366
North Richmond Community Health
Fax: (02) 6056 3466
Dr John Furler Weekly visiting Hep C Nurse 23 Lennox Street, Richmond Contact: (03) 9418 9800
Contact: (03) 9362 8100 www.wrhc.com.au/Services_HEALTH.html Inner Space Primary health care and needle syringe program Hepatitis C information, support and treatment. 4 Johnson Street, Collingwood
Nunawading Clinic
Contact: (03) 9468 2800
176 Springvale Road, Nunawading
www.nych.org.au/services/drug.html
Dr David Ross GP s100 prescriber for HCV and Opiate Replacement Program Contact: (03) 9878 9191
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Contacts Living Room Primary health care and needle syringe program Hepatitis C information, support and treatment services 7-9 Hosier Lane (off Flinders Lane), Melbourne Contact: (03) 9662 4488 www.youthprojects.org.au
Related Health Services
Regional services
Penington Institute - formerly ANEX
These contacts are able to provide
(Association for Needle Exchanges)
information about local viral hepatitis
95 Drummond Street, Carlton
related services.
Contact: (03) 9650 0699
Ballarat Community Health
Harm Reduction Victoria (HRV)
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
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HIV/Hepatitis/STI Education and Resource Centre at the Alfred Moubray Street, Prahran Statewide resource centre on HIV/AIDS, Hepatitis and Sexually Transmissible Infections Contact: (03) 9076 6993 Web: www.alfredhealth.org.au
Barwon Health Drug 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 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
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.
HEPATITISVICTORIA
SUPPORT GROUP Over the years Hepatitis Victoria has
Thursday 16 April 2015, from 6-30pm to
operated a Support Group for people living
8-30pm: Support Group at Hepatitis Victoria,
with hepatitis C in a variety of formats and
Suite 5/200 Sydney Road Brunswick
locations. As the hepatitis C landscape is changing, particularly with the imminent
Thursday 21 May 2015, from 6-30pm
arrival of medications that will change the
to 8-30pm: Support and Information
Yarrawonga Community Health
treatment landscape, it is opportune to
session on New and emerging treatment
Cherie McQualter Whyte
review the approach and ensure it meets
options for hepatitis C with Guest
Contact: (03) 5743 8111
the needs and aspirations of the affected
Speakers, at Hepatitis Victoria,
community going forward.
Suite 5/200 Sydney Road, Brunswick
To this end, Hepatitis Victoria has
Sunday 21 June, from 2-00pm to 4-00pm:
commenced a review of all of our client
Support Group and introduction to
support and participation activities. Already
Chronic Disease Self Management,
a survey of previous and potential Support
at Hepatitis Victoria,
Group attendees has been undertaken.
Suite 5/200 Sydney Road Brunswick
Broader consideration of the ways people wish to engage with the organisation, now and into the future, will now occur, with an anticipated completion in May 2015.
For further information on the Support Group, please contact Garry Sattell at Hepatitis Victoria on 1800 703 003.
In the meantime, the Hepatitis Victoria
If you would like to contribute to the review
Support Group will continue, in a slightly
of the ways in which Hepatitis Victoria can
amended operating format and focus until
best support, mobilise and engage with
the end of the current 2014/15 financial year. people affected by all forms of viral hepatitis, then please contact Garry Irving at Hepatitis To that end the Support Group dates until June 2015 will be:
Victoria via admin@hepvic.org.au.
23
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!
Y
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
24
Suite 5, 200 Sydney Road
Brunswick, Victoria 3056