The Magazine of Hepatitis Victoria
April 2016
Good Liver There has never been a better time to...
TREAT The new hepatitis treatments The new generation direct-acting antiviral (DAA) medications now available to Australians living with chronic hepatitis C are more effective, easier to take and have fewer sideeffects than the older medications.
TEST
CURE
Health promotion response to new treatments The speedy uptake of the new treatments is partly due to those who have been waiting under the care of a specialist for the new medicines.
Oh, what a journey! Pam Wood’s story “I have a future to look forward to that I never thought existed and it amazes me how much my thinking has changed in terms of what I want to do with my life.”
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Staff
Contents
Contact and postal address:
Aurora Tang
Hepatitis Victoria
Health Promotion Officer Telephone: 9385 9103 aurora@hepvic.org.au
Suite 5, 200 Sydney Road, Brunswick, Victoria 3056. Telephone: (03) 9380 4644 Facsimile: (03) 9380 4688 Email: admin@hepvic.org.au Website: www.hepvic.org.au
HepatitisInfoline
1800 703 003 Melanie Eagle CEO
Telephone: 9385 9102 melanie@hepvic.org.au
Garry Irving Programs and Operations Manager Telephone: 9385 9109 garryi@hepvic.org.au
Martin Forrest Health Promotion Program Manager Telephone: 9385 9111 martin@hepvic.org.au
Damian Salt Office Coordinator Telephone: 9380 4644 admin@hepvic.org.au
Jawid Sayed Health Promotion Project Officer Telephone: 9380 4644 jawid@hepvic.org.au
Tuan Nguyen Health Promotion Project Officer Telephone: 9385 9105 tuan@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 and Human Services.
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Melissa Wright Health Promotion Officer Telephone: 9385 9104 melissa@hepvic.org.au
Shwetha Shankar Health Promotion Officer Telephone: 9385 9108 shwetha@hepvic.org.au
Toni-Marie Wuelfert Development Coordinator Telephone: 9385 9110 tonimarie@hepvic.org.au
Marina Mazza Health Promotion and Community Participation Co-ordinator Telephone: 9385 9112 marina@hepvic.org.au
Shaun Knott Digital and Online Services Officer Telephone: 9385 9106 shaun@hepvic.org.au
Reece Lamshed HEPReady Business Development Manager Telephone: 9385 9116 reece@hepvic.org.au
Karen Greening HEPReady Project Officer Telephone: 9385 9117 karen@hepvic.org.au
Pam Wood Community Participation Project Officer Telephone: 9380 4644 pam@hepvic.org.au
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CommuniquĂŠ
From the desk of the Chief Executive Officer
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The new hepatitis treatments
Some frequently asked questions
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Health Pathways
Important new information for GPs on HCV treatment
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Jane Little
The wait is over!
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Health promotion response to new treatments
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Hepatitis C medications and your local pharmacy
New treatments A GPs perspective
10 Oh, what a journey!
Pam Wood tells her story
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A level playing field
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There’s never been a better time to ensure treatment for people in custody
Art Inside the West and Stay Safe Inside Health promotion art winning entries
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Timeline to success
Time to be HEPReady
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Introducing HEPLink...
and... HEPSpeak
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How healthy is your weight?
HEPReady is here!
Amanda Geikie
Community Participation Project Officer Telephone: 9380 4644 amanda@hepvic.org.au
Body Mass Index is a quick, easy way to check
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Eat healthy!
Some liver loving recipes to enjoy!
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Liver clinics
Reader response Your comments or experiences in regard to any articles in Good Liver are welcome. Email: admin@hepvic.org.au
Contacts
Graphic Design: Swivel Design 0435 733 206
Communique
From the desk of the Chief Executive Officer
There has never been a better time to test, treat and CURE! at some point) will become aware of this opportunity to take positive action.
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here are very few moments in history that we witness the end of a killer disease. This last month we have seen just that – the beginning of the elimination of hepatitis C in Australia.
Tuesday 1 March was a momentous turning point for around a quarter of a million Australians. It was the day that breakthrough interferon-free therapies officially became available to ALL people living with hepatitis C through the Pharmaceutical Benefits Scheme. It has been a long time coming, but this development does represent a huge step forward. We can now talk about elimination within a generation: a treatment regime that is fast (a few short months), that is easy (daily tablets that are less toxic) and that represent a cure for nearly all.
There has never been a better time to test, treat and CURE! There has never been a better time to look forward to a future that is free of hepatitis C. We are very keen to ensure that all Victorians living with hepatitis C (including those who may not yet be diagnosed, but may have been exposed
Hepatitis Victoria has begun a community awareness campaign to help drive home this message. We hope that you will help us share the word and encourage others to take action. It is important for people to understand that the release of new treatments means that there initially may be a high demand placed on doctors and pharmacies. We are aware that not all pharmacies, particularly those in regional areas, are currently stocking the treatments. We encourage those who may be experiencing any delays or issues to be patient, and stay engaged with your doctor and local pharmacy.
We also encourage people with any queries or concerns to phone the Hepatitis Victoria Infoline on 1800 703 003. While much of this issue of Good Liver is devoted to this new future, it is important to acknowledge that a cure is not yet available for hepatitis B. It is being worked on however, and we hope these positive developments inspire improvements in the response to hepatitis B. Hepatitis Victoria aspires to a Victoria free of viral hepatitis. This month that goal has become much closer.
Melanie Eagle, CEO
Tuesday 1 March was the day that breakthrough interferon-free therapies officially became available to ALL people living with hepatitis C through the Pharmaceutical Benefits Scheme. 3
The new hepatitis treatments Some frequently asked questions
T
he new generation direct-acting antiviral (DAA) medications now available to Australians living with chronic hepatitis C are more effective, easier to take and have fewer side-effects than
Are the new medications available for all people with hepatitis C?
The Australian Government has listed these new medications on the Pharmaceutical Benefits Scheme (PBS), ensuring they are accessible and affordable to all people with hepatitis C.
Yes, treatment using the new DAA medications is available through the PBS for all people living with hepatitis C over the age of 18 and who have a Medicare Card. However, the particular combination of medications used will depend on a range of individual factors including genotype, prior treatment experience and whether or not you have
This is a leap forward in the management and treatment of hepatitis C
already developed cirrhosis (liver scarring).
and positions Australia as a world leader in publicly-funded access to
What about people who currently inject drugs?
the older medications.
these new, highly effective medications.
There are no restrictions applied to people who inject drugs as they are a priority population for hepatitis C treatment. Whether or not a person currently injects drugs should not be used as criteria for restricting access to the new medications.
Can people in prison access the new medications? Yes, people in prison are a priority population for hepatitis C treatment. The Australian Government has ensured the new medications will be funded for people in prison.
Are there interferon-free options available for all genotypes? Initially, from 1 March, interferon-free treatment options will be available for genotypes 1, 2 and 3 – these are the most
What are the new medications? The new, direct-acting antiviral medications available on the PBS from 1 March 2016 are:
• sofosbuvir + ledipasvir (Harvoni®) • sofosbuvir (Sovaldi®) • daclatasvir (Daklinza®) • ribavirin (Ibavyr®) Following a clinical assessment, these medications are used independently or in combination with other medications depending on the person’s particular situation. For most people, this will mean treatment without the need to use interferon.
Are the new medications better than the previous ones? Yes, there are a number of benefits. The new DAA medications are:
• more effective, resulting in a cure for 90-95% of people • taken as tablets only and have very few side-effects • taken for as little as 8-12 weeks in most cases, and • provide interferon-free treatment options for all common genotypes in Australia.
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common genotypes in Australia. For now, treatment for people with genotypes 4, 5 and 6 will still require taking a combination of one of the new medications in conjunction with pegylated interferon and ribavirin, but for a shorter duration than before. To find out more go to http://www.hepatitisaustralia.com/hcv-treatments-options Other new DAA medications are currently being considered by the Government for listing on the PBS and we anticipate that more will follow. Further information about these and other interferon-free options for genotypes 4, 5 and 6 will be provided as it becomes available.
What information will the doctor need to know about your health before treatment can be prescribed? There are a number of tests the doctor will do and information you will be asked to provide before treatment can be prescribed. These include: undergoing blood tests to confirm you have active hepatitis C infection undergoing tests to determine the hepatitis C genotype (strain) you have undergoing an assessment to see if you have developed cirrhosis (liver scarring) discussing any previous treatments for hepatitis C you may have taken
• • • •
• identifying any other illnesses or health complaints you have, and • discussing any other prescription medications, over-the-counter medications or substances you are taking (to avoid any possible drug interactions).
based pharmacies and not local, community-based pharmacies. As well as some initial delays, some prescriptions may only allow you to collect four weeks’ supply of medicine at a time. So it is important to plan ahead so you don’t run out of medicine.
It is very important that medications are taken as prescribed. So the doctor or nurse may also talk with you about your readiness to start treatment and discuss things that may impact on your ability to take
Will you need to have more tests during treatment?
the medicine regularly, as prescribed.
Yes, the doctor will need to do blood tests to monitor how your body is
Where can you get your prescription filled? This will depend on the type of prescription you receive and the doctor will provide more details. There are two types of prescriptions, known as either s100 or s85. Most people will receive the s85 prescription, which can usually be filled by your local pharmacy. However, it is important to note that some pharmacies may not have the medications readily available and you may need to wait up to 72 hours to collect them. This is due to the very high cost the pharmacies have to outlay to stock the medications and the initial unknown quantities needed in your area. Some smaller pharmacies may refer you to another pharmacy or a public hospitalbased pharmacy to fill your prescription. This situation should improve over time as more people start accessing treatment. Some people accessing specialists may receive the s100 type of prescription. These prescriptions can only be filled through hospital-
responding to the medications. This means checking if the medicine is working effectively against the hepatitis C and that it is not negatively affecting your overall health.
Can General Practitioners (GPs) prescribe treatment for hepatitis C? Yes. From 1 March, GPs in Australia can prescribe the new medications. Before prescribing any medications, your GP will be required to collect information and conduct tests (see above) to establish which combination of medications will be the most effective for you. Based on that information, the GP will then consult with a specialist before prescribing the medicine for you. This means it is likely you will need a couple of appointments before receiving a prescription. In some cases, where there are other significant health factors to consider, the GP may refer you to a specialist before treatment is commenced. Continued over page
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New hepatitis treatments Some frequently asked questions continued What does treatment with the new medications involve? The treatment regimens for the new DAA medications range between eight and 24 weeks for a complete course of treatment, depending on your genotype, treatment history, whether you have cirrhosis and the combination of medications used. Refer http://www.hepatitisaustralia.com/hcv-treatments-options Some treatments require only one to two tablets once or twice a day. For some treatment regimens, up to three medications may be required to be used together. Depending on treatment history and genotype, some people may still need to include an injection (peginterferon) as well as taking tablets. Your doctor will explain the options available to you in more detail.
HealthPathways Important new information for GPs on HCV treatment
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ictorian General Practitioners now have access to updated and comprehensive information for the assessment, management and referral of patients with chronic hepatitis C.
The hepatitis C pathway has been updated on HealthPathways* Melbourne, in consultation with the Department of Health and Human Services, specialists from The Royal Melbourne Hospital, St Vincent’s Hospital Melbourne, Western Health, Eastern Health, and the Burnet Institute, as well as hospital and community pharmacists. The updated information includes comprehensive drug tables, patient management and surveillance guidelines, as well as localised referral information for Liver Clinics and Units. The update is an important development given that new, highly successful treatments became available to all people with hepatitis C on 1 March.
Can you still see your specialist to access the new medications?
The listing of new treatments on the PBS represents a huge step forward
Yes, gastroenterologists, hepatologists or infectious diseases
of HCV patients in general practice. So it is crucial that general
physicians experienced in the treatment of chronic hepatitis C will
practitioners improve their knowledge and skills in the diagnosis and
continue to prescribe the new medications. These specialists will
in the battle against hepatitis C, and a major change to the management
management of HCV especially the use of the new DAAs.
also provide advice to GPs prescribing the new medications, so you
Further updates to the HealthPathways page will occur regularly as
may consider seeing your GP if this is more convenient for you.
new information becomes available.
How much do the medications cost you? From 1 March 2016, you will only be charged the usual co-payment price you pay for the dispensing fee of each prescription. As these medications are PBS ‘authority required’ the doctor can only prescribe one medicine on each prescription. This means you may be required to pay the dispensing fee for each medicine. From 1 January 2016, the dispensing fee for each prescription is $38.30 for general patients and $6.20 for concessional patients. This fee is reviewed each year.
What if treatment is not effective for you? For most people it is highly likely the new DAA medicine will be effective. If the new treatment does not work for you, your doctor will refer you to a specialist for further assessment prior to commencing any further treatment.
How to access HealthPathways Melbourne If you are a health professional in Melbourne’s north western or eastern region, you can access the site by requesting the username and password from the HealthPathways Melbourne team, email: info@healthpathwaysmelbourne.org.au HealthPathways Melbourne Collaboration For health professionals outside of these areas you can contact
Where can you get further information?
your local PHN: http://vphna.org.au/victorian-phns/
You can talk to your GP, specialist, clinic nurse or call the Hepatitis Victoria Infoline on 1800 703 003.
*HealthPathways provides a manual for general practice teams to assess, manage and refer their patients to secondary, tertiary, and community services. The pathways have been designed for use during consultation and are jointly developed through collaboration between hospital clinicians and community clinicians
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Jane Little
The wait is over! “I am a Hepatitis Hero because I think my story will be able to help others” I contracted the hepatitis C from IV drug use between 1979 and 1983. At that time I was experimenting with IV drugs, which was quite common amongst my peers. In those days there was no public awareness about the transmission of blood borne viruses. I was diagnosed in 2010 when another health problem alerted my GP that something was very wrong. An abnormal Liver Function Test resulted in me being referred to a gastro specialist. I told her my entire health history, including information about my alcoholism
undertake treatment because of a rheumatoid factor in my blood that meant that there was a possibility that I could contract full blown rheumatoid arthritis if I had the Interferon based treatment. I had no choice but to wait for new improved treatments, that I had heard would be coming in four to five years’ time, and would not include Interferon. Since then, my health has been reasonably good. I tried to stay focused on living one day at a time and doing what I can to manage my condition and to raise awareness about hepatitis C, like participating in the HEPSpeak program or becoming a Hepatitis Hero.
and IV drug use, way back in the late 70s and early 80s. She then
The waiting is now over. On 11 March I obtained a prescription for one of the new hep C drugs. After this long wait, I’m finally
suggested I have a hep C test, which came back positive.
able to start treatment and get rid of this virus.
Jane’s message to others: The more public awareness “ there is about viral hepatitis and the new treatments the better as more people will be able to now clear the virus. Get tested, go to a doctor, get on to the new therapies and clear this virus once and for all!
”
I was extremely shocked and upset when I learned about my hepatitis diagnosis. Mainly because I had stopped drinking and taking drugs in 1984 and felt that after living a clean and sober life for that length of time this diagnosis seemed very unfair. What I heard about treatment at the time was that it was ‘no walk in the park’ - with extensive physical and mental side effects present in the majority of people. However, after the triple therapy came in, the percentage of people clearing the virus looked higher. That gave me hope. I then had a test and found I had the gene that responded to treatment, so that gave me even more hope. If I embarked on treatment I may have a good chance of clearing the virus. It helped me immensely going to a monthly support group where I prepared myself for treatment around July 2012. However, after arriving at the hospital the hep C Nurse told me I was unable to
Have your say on our Hepatitis Heroes PROGRAM We are currently evaluating the Hepatitis Heroes program and would really appreciate your feedback. After reading this story, please go online to: www.hepvic.org.au/page/95/custom-hepheroes-page and take a few minutes to give us your opinion about the Hepatitis Heroes program.
Your comments are very important for us and will help improve the HEPHeroes program.
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Heath promotion response to new treatments groups is key to spreading the message that there has never been a better time to seek treatment. A recent forum hosted by the Australian Research Centre in Sex, Health and Society (ARCSHS) investigated this very question. It has become obvious that the message has to be delivered in a way which is meaningful for the priority group. This will mean having resources and information available in the languages of migrants, refugees and new arrivals. Prisoners will need to have information that promotes testing and treatment within the custodial setting. Many Indigenous groups will also need to have language specific resources, delivered by a trusted voice. The messages themselves are quite simple; all Australian adults with a Medicare card can access the new medicines; cure rates are up to 95%; treatment duration is short, 12 weeks for most; and side
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effects are minimal. Cost should no longer be a significant barrier t is good to see that the community has an appetite for the
with each script costing a maximum of $38.30 (and under $6.30 for
new medicines to cure hepatitis C which became available
health care card beneficiaries), and for the most common genotypes
in March.
It has been reported that in the first three weeks of their availability, the total number of scripts which have been written, exceeds what would normally be issued for a whole year
of the old treatments. This speedy uptake is in part due to the numbers who have been waiting under the care of a specialist for the availability of the new class of
It has been reported that in the first three weeks of their availability, the total number of scripts which have been written, exceeds what would normally be issued for a whole year of the old treatments.
medicines. The risk is that once
it is an all-oral therapy. Information regarding treatment options comes from all quarters mainstream media, a health care provider, the internet, a pharmacist, family and friends, or organisations such as Hepatitis Victoria. We need to ensure that we are consistent and current in the information being distributed and that unrealistic expectations are not promoted.
this backlog of patients has been cured in the coming months, the
The voice of the lived experience community is a powerful
demand for treatment will not persist.
communication tool. It breaks down the “us versus them� mentality
In the past it has been reported that under the Interferon regime, only
and can give insight into treatment experiences.
two percent of those diagnosed with hepatitis C would seek treatment
The highest rate of transmission is in young people, who can be
every year.
a difficult group to reach with health promotion messages. The
With reports of the brutality of the side effects putting off many, and others who began treatment not able to tolerate the physical and psychological discomfort, treatment rates remained low.
importance of harm minimisation becomes paramount. If tattooing, injecting or piercing, use sterile equipment. The same message needs to be reinforced for people who inject drugs. Reinfection is a risk, but treatment is the best form of prevention.
This barrier to treatment has now been removed, but there are others
This is one of the most important demographics to reach. Treatment
that persist. Stigma and discrimination are still deterring patients from
is available regardless of past or present drug use behaviour. The
approaching health care providers. Whether in a small country town
message needs to be delivered consistently, in a way that speaks to
where gossip is quick to spread, or in the local family clinic, many are
the priority group.
still not made to feel welcome.
It needs to be acknowledged that individuals may face obstacles when
So how do we maintain the demand for a cure and overcome some of
seeking treatment. But please persist. Now is the time to get tested.
the obstacles that will present? Engagement with priority population
There has never been a better time to be cured.
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Hepatitis C medications and your local pharmacy
New treatments A GP’s perspective
A
s a GP working in a primary care service , including an NSP for people who inject drugs, it is wonderful to know that after years of little change there is now the opportunity, through the availability of the new DAAs, to move towards eliminating hepatitis C. The new drugs for the treatment of hepatitis C are safe, efficacious, and available on the PBS. Together with an increase in GP and primary care based management the new drugs will have a dramatic impact on access, equity and therefore the epidemic.
T
he recent listing of new treatments for hepatitis C on the Pharmaceutical Benefits Scheme (PBS) also means they can now be obtained through local pharmacies in many cases. This is great
news for many people living with chronic hepatitis C.
Hepatitis Victoria is aware that system issues are resulting in some people experiencing difficulties in getting their prescription filled at their local community pharmacy and that this is very distressing for people who have made the important decision to commence treatment. Hepatitis Australia is liaising with the Health Minister’s office, pharmaceutical companies and the Pharmacy Guild in an attempt to have the identified system problems resolved as soon as possible. Until these problems are fully resolved we recommend you:
• Ask to speak directly to the Pharmacist when you present your hepatitis C prescription at a community pharmacy.
• Discuss with them whether they will work with you to obtain the hepatitis C medicines for you.
• Bear in mind that almost all pharmacies will need to place an order to obtain the medicines, which may result in a short delay
(24 – 72 hours). This is an especially important consideration for those people who are filling second or third scripts, to avoid a risk of there being a gap in availability of their medication. If any particular pharmacy declines to work with you to obtain the medicines please contact the Hepatitis Victoria Infoline on 1800 703 003.
Understandably, there are some initial teething issues as health providers come to grips with the requirements for prescribing and dispensing of these medications. These issues will diminish in the coming months. Training of GPs, up-skilling of workforces across many sectors including alcohol and other drugs, mental health, refugee and asylum seeker teams will occur and assist with this process. A Consensus Statement prepared by an expert panel of clinicians representing the Gastroenterological Society of Australia, the Australasian Society for Infectious Diseases, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine, the Australasian Hepatology Association, the Royal Australian College of General Practitioners and Hepatitis Australia also provides a vital reference for health professionals involved in the management and treatment of hepatitis C. Stigma and discrimination are ongoing issues for people with and at risk of hepatitis C. In terms of treatment however this should not be the case, and the medical and broader community need to remember this. The new DAAs are available to everyone over 18, regardless of how they may have acquired hepatitis C. One of my catch cries is: “I don’t care how you got it, let’s just get rid of it”. I encourage my medical colleagues to have a similar attitude. And I encourage all people living with hepatitis C to speak with their doctor, and get cured.
Fran Bramwell, GP Fran is a GP working for Health Works, which is a part of the cohealth community health service in Footscray. She also was one of the contributors to the Consensus Statement (https://www.asid.net.au/ documents/item/1208).
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Oh, what a journey! Pam Wood
A
new diagnosis of any health problem is always a little problematic, but my diagnosis with hepatitis C came as a
shock. I felt ashamed and guilty. I hadn’t just brought this on
myself but also on my family. I told as few people as possible, put my head in the sand hoping that it would all just go away. Unfortunately that didn’t happen and I developed further health problems that were related to my hepatitis C and was advised that I should have treatment. At this point in time I was more than treatment naïve, I was totally naïve and with a few notes on side effects and a letter for a psychiatric review, which you would have thought would have given me some clue as to what I was getting into, I set off on my first treatment roller coaster. I had been told that I had between 50% - 70 % chance of curing the virus and I felt very confident that would happen.
The two weeks in the clinical trials unit wasn’t exactly a walk in the park, but my blood tests showed that the treatment was working. My liver function
I diligently took my medication, giving myself an injection of interferon
tests improved and I started to feel fantastic. These medications felt
once a week. I struggled emotionally but knew that was probably the
amazing. Unfortunately it was a phase 1 trial and I was only able to access
medication. At work, disclosure wasn’t an option as I was aware of
them for the two weeks and it was back to the interferon/ribavirin regime.
discrimination towards people who had taken drugs or had blood borne
Yet again after 24 weeks it was found that the treatment wasn’t working
viruses and I didn’t want to risk that, or losing my job. I spent a lot of time nodding my head and biting my tongue and grumpily retreated into my own stoic little world. I felt I was doing quite well. I was pretty confident that pretty soon it would be over and I would be cured and all of this would be history. Unfortunately I couldn’t have been more wrong. After 22 weeks the treatment was not working, my viral load was increasing not decreasing; I was to stop taking the medication immediately. The treatment hadn’t been easy, but I hadn’t considered that it wouldn’t work. All that hope had disappeared. All I’d achieved were some lingering side effects to add to my hepatitis symptoms and I was still left with the condition that had
and even though my viral load had been incredibly low on the new DAA meds my viral load was increasing on interferon /ribavirin. It was time to stop again. It felt like a tease, my viral load was low and I had a taste of what it would feel like to live without this virus but unfortunately it wasn’t gone and with this treatment it wasn’t going to.
The two weeks in the clinical trials unit wasn’t exactly a walk in the park, but my blood tests showed that the treatment was working. My liver function tests improved and I started to feel fantastic.
initiated treatment in the first place. The hard part for me was that at this stage there were no other treatments
By this time my liver was deteriorating and I developed further health
and I was left with no other course of action. I felt hopeless.
problems. I had reached a point were I decided that I just needed to get on
I remember at this time talking with my counselor and being told I couldn’t
through these journeys was that I stopped feeling guilty, stopped blaming
predict the future and that with all the medical research advances happening I shouldn’t give up hope. I thought she was talking rubbish and
with living my life as well as I could. One of the things that had happened myself and started to grow in confidence. I became much more nurturing towards myself. This disease no longer overwhelmed me and I was living
wasn’t consoled. I couldn’t even imagine a cure in my lifetime.
as well as I could with it.
Time moved on and I came to some sort of acceptance of my situation.
Due to the clinical trial I had done with new DAA medications I wasn’t
With the help of some great people I became better informed and a little
eligible to take part in any further trials with these new medications. I could
less judgmental towards myself. It was around this time that I was offered
only hope that they would be available and approved in time to save my
a clinical trial with some new meds, which I was told “were likely to be
life. Chemotherapy for a related blood cancer had meant that my liver was
game changing”.
now cirrhotic and my risks of liver cancer or my blood cancer returning
Hope was reborn and I felt much better prepared for this second
were high.
round of treatment. I was to spend two weeks living in, at a clinical
Waiting seemed eternal, especially when I knew that for me these
trials unit, a unique experience in itself: being given these new meds
medications really would mean the difference between life and death. I had
and closely monitored for drug effectiveness and to see that they
seen several specialists and had been in touch with anyone that I thought
had no ill effects on my health. This was to be followed up with 48 weeks
might be able to help me to access these new DAA meds. It paid off. I
of interferon/ribavirin.
became aware that one of the drug companies was offering compassionate
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access to people who couldn’t afford to wait for the medications to come
skeptical. I was always incredibly grateful for this opportunity to treat, but
through. I contacted my specialist and he set things in motion.
was never totally convinced that it would work. There was always that
As always with things relating to hepatitis C there was lots of waiting, but once again I was hopeful. I waited for the data to be sent to the
niggling small percentage of people it didn’t work for. Was I going to be one of them?
drug company and for them to accept my application. I waited for the
No matter how much reassurance I was given and no matter how many
medications to have individual TGA approval so I could use them and for
blood tests I had, that niggling doubt still remained. The blood tests
the hospital ethics committee to give their approval. The final wait was
were reassuring and for some of the time would help to put to rest the
for the drug company to send the medications to the hospital. Eventually
extreme anxiety I was feeling. But I couldn’t completely override it. Past
I was walking away from the pharmacy with a large bag of medication,
experiences loomed strongly.
looking over my shoulder and wondering why something so valuable didn’t require an armed guard and would I get home safely without being mugged!
I finished treatment clear of the virus and recovered very quickly from the side effects. In fact the terrible brain fog that I had been experiencing for such a long time seemed to have almost completely disappeared. It’s hard to explain but something was missing and I wasn’t missing it at all. I finished treatment clear of the virus and recovered very quickly from the side effects. In fact the terrible brain fog that I had been experiencing for such a long time seemed to have almost completely disappeared. It’s hard to explain but something was missing and I wasn’t missing it at all. Four weeks after treatment I had a blood test and for the first time in a long time I wasn’t anxious about the result. I just knew that the virus was gone. My GP carefully organised my test so as I would have access to the results the day after I had it, because of previous anxieties about test results. It was her day off but at midday she phoned me, she had tracked down my results and wanted to be the person to share the good news. We had been through a lot together. Four weeks post treatment and I was still clear. I’m sure the joy could be heard for miles.
My treatment required 24 weeks of new meds plus ribavirin. It wasn’t quite as simple as I’d hoped; the ribavirin caused a few glitches. Even though my haemoglobin had remained high on both previous treatments, this time it dropped significantly and I did a very embarrassing faint in
I still had a 12-week test to go to officially have a ‘sustained virological response’ (SVR), essentially a cure, but the chances of relapse now were minimal and I was happy to claim the victory.
the supermarket and ended up with a blood transfusion. Nothing it
Clearing was a strange feeling, after the initial elation I discovered there
seems is predictable.
was also a strange sense of grief that I found difficult to grasp. This
Right from the word go my bloods started to improve and after four weeks I was able to achieve what I had never managed with any other treatment; the virus was undetected in my blood. I hadn’t even contemplated what it would mean to not feel infectious. The day after that result I was at my dentist and what an incredible experience it was to
virus had been part of my life for such a long time and it had taken me on a journey that I had never expected. Some of that journey I could happily have done without but I am also very aware that some of the personal growth that has occurred would never have happened without this journey. For a little while I was a little unsure of whom I was without
sit in the chair and know that I wasn’t putting her at risk. I couldn’t infect
hepatitis C. It was also very difficult at times to actually believe that after
her. I’d never smiled in the dentist’s chair before, but I did that day.
all this time it was finally gone.
Even though I knew that I had at least a 95% chance of success with
I no longer feel ashamed or guilty about my past but acknowledge that as
this treatment, it was still hard to believe that I wasn’t going to be in that
a teenager I was doing what I could to survive in what at times seemed
small minority that wouldn’t clear. My previous treatments had made me
an overwhelming world.
11
Oh, what a journey
Pam Wood|continued from p. 11 My family has suffered along beside me with these battles and during my journey I realised what amazing individuals they had grown to be: supportive, empathetic, loving and so much more. They have given me courage when I needed it and always unconditionally supported me even at times when I didn’t think much of myself. I’m now past the 24-week post treatment period and my tests are all still clear. My liver function tests are all in the normal range and every fibroscan comes back with a lower score. I’m able to exercise much more than I’m afraid I do and in reality can’t remember the last time I felt this good. I have a future to look forward to that I never thought existed and it amazes me how much my thinking has changed in terms of what I want to do with my life. Unfortunately curing my hep C hasn’t cured everything in my life. I still have all those niggling little things that go with being an older person and the body certainly isn’t as agile as it once was but I look at my peers and feel I can now keep up.
HEPSpeak offers you access to a unique group of courageous hepatitis survivors, who are willing to share their personal story. BENEFITS: • Diverse group of people with ‘lived’ experience
of viral hepatitis.
• Modify the content of the session based
on the training needs and participants.
• Understand the impact, including the
stigma and discrimination, of hepatitis through a real life example.
• Interact with the speakers to discuss
their experiences with treatments, health care professionals and community.
• Well trained, mentored
With the recent PBS listing of the new DAA medications, making them available for everyone I realise what a different journey people are going to have from the one I had. The journey from diagnosis to cure could be less than twelve months. With the recent PBS listing of the new DAA medications, making them available for everyone I realise what a different journey people are going to have from the one I had. The journey from diagnosis to cure could be less than twelve
and experienced speakers, who are the ‘human face of viral hepatitis’, at a reasonable price.
Search on the internet for ‘HEPSpeak’ or contact us at: admin@hepvic.org.au or (03) 9380 4644 to book a HEPSpeaker
months. Damage to lives and livers will be minimal. I can’t help but feel just a tinge of jealousy amongst the delight and hope I feel for people in the future. It is also sobering to look back with some grief at the many
ATTENTION! Needle and Syringe Program information:
courageous people I came to know on my journey, who
New treatments for hepatitis C play a critical role in the elimination of
just didn’t have time on their side and either needed liver
hepatitis C, however the ongoing importance of awareness and harm
transplants or died before this miracle of science became
minimisation programs cannot be underestimated. Needle and syringe
available.
program services (NSPs) help minimise the spread of blood borne viruses
I’m eternally grateful that with great support, compassionate access and timely management I’m not just still here but every day gets better and better.
like hepatitis B and C. Following are online links to up-to-date information for NSPs: Victorian Department of Health and Human Services directory: https://www2.health.vic.gov.au/alcohol-and-drugs/aod-treatment-services/ aod-prevention-harm-reduction/needle-and-syringe-program
Pam Wood is a former Hepatitis Victoria Board member.
Australian Injecting & Illicit Drug Users League (AIVL) directory:
She has supported many people living with hepatitis C
http://www.aivl.org.au/nsp/
through being a member and moderator of the online peer support group, hepcaustralasia.org.
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A level playing field
There’s never been a better time to ensure treatment for people in custody
It is said that no one truly knows a nation until one has been inside its jails. A nation should not be judged by how it treats its highest citizens, but its lowest ones. Nelson Mandela
A
n important component of Minister Ley’s announcement
The revisions relating to health and medical services are consistent
on 20 December 2015 was the inclusion of access to the
with the decision of the Federal Government to fund access to the
new medications for people in custody.
new DAA medication for people in custody. In particular, the rules
The Federal Government funds the Medicare scheme which enables access to free or subsided health care of nominated medical and hospital services to Australian residents and some categories of visitors to Australia. The Pharmaceutical Benefits Scheme enables
promote the principle of comparable health services to those in the community, enabling continuity of care with services outside of prison including infectious diseases, medical confidentiality, appropriate and specialised treatment and care.
people who are eligible for Medicare to access specific medications
The disproportionate burden of hepatitis C experienced by people
subsided by the Federal Government under specific conditions.
in custody is widely accepted. Important information about the
Prison health services throughout Australia are the responsibility of the State or Territory. As a result, there can be limitations to accessing care under both the Medicare Scheme and the Pharmaceutical Benefits Scheme to people in custody. Such limitations could have resulted in the provision of new medications for chronic hepatitis C infections to be left to the discretion and expense of each State and Territory. Fortunately this is not the case. The United Nations Standard Minimum Rules for the treatment of prisoners serve as a guide for the treatment of people in custody and the governance of custodial facilities. First adopted in 1955, a revision of these rules was adopted on 17 December 2015. The revision of the rules acknowledges the importance of protecting the human rights and
health and risk behaviours of people in custody is accessible in the Kirby Institute’s Prison Entrants Blood Borne Virus survey, and the Australian Institute of Health and Welfare’s report on the Health of
Australian Prisoners 2015. Both provide ongoing surveillance that is relevant to all people in custody rather than only prison entrants who have hepatitis C at reception into prison. Treatment for people in custody has multiple benefits. For the individual who has chronic hepatitis C it reduces their potential morbidity and mortality risk. It avoids delays to care that might otherwise not be available in custody. Treatment provides an opportunity for people who have a chronic infection to be cured during their period of incarceration.
dignity of people in custody and has been named the Mandela Rules.
Key areas revised resulting in the Mandela Rules are:
(a) Respect for prisoners’ human rights (b) Medical and health services (c) Disciplinary action and punishment (d) Investigation of all deaths in custody, torture
or inhuman treatment or punishment
(e) Protection and special needs of vulnerable groups deprived of their liberty, (f) The right of access to legal representation
Marngoneet prison Treatment is also important to reducing transmission in a setting in which the full range of harm minimisation strategies are not yet
(g) Complaints and independent inspection
available. Access to new DAA medications is also important to
(h) The replacement of outdated terminology
custody are only there temporarily.
(i) Training of relevant staff to implement the Standard Minimum Rules
communities and services outside prison as the majority of people in
In short, treating those on the inside, and on the outside provides a level playing field that is consistent with the Mandela Rules and of benefit to everyone.
13
Art Inside the West and Stay Safe Inside
I
n our last issue we featured entries to the “Art Inside the West” competition. A collaboration between Hepatitis Victoria and Justice Health as part of the 2015 Western Liverability Festival, the competition was conducted to encourage people in custody to contribute to new prison specific health promotion resources. The competition is now complete and we are pleased to share the winning entries with you. The resulting health promotion resources will be delivered to people in custody who participate in Hepatitis Victoria’s new program ”Stay safe inside”.
14
The winning entry “Heard the one about the hep C virus that walked into the cell…” This entry was an image replicated four times (see
images below) highlighting multiple risks for blood borne viruses that can be faced by people in prison. It will feature on a deck of playing cards created specifically for people in prisons throughout Victoria Anonymous Artist, Art Inside the West 2015
Second place
People’s Choice Award “Hepatitis C is treatable and it is curable so my submission is about hope” With medication, diet and a healthy lifestyle hepatitis C doesn’t have to be something you just have to live with. It also represents that there is hope for a life which is healthy and productive outside of prison and it is available to us all. Anonymous Artist, Art Inside the West 2015
Third place “Don’t share even the filter used in the spoon” Garry, Art Inside the West 2015
Fourth place “If you share fits there is a very high chance you will catch some type of hepatitis” Prisons can register their interest in participating in the Stay Safe Inside program with Hepatitis Victoria. Anonymous Artist, Art Inside the West 2015
15
Timeline to This Timeline is an adaptation of that previously published in Hepatitis NSW’s Hep Review magazine.
Success
O
n 1 March 2016, people in Australia living with hepatitis C gained equal
access for the first time to all-oral, interferon-free, direct-acting antiviral
December 2013
treatments which lead to cure in more
Sofosbuvir approved by FDA
than 90% of cases. In an historic moment
US patients get first access to sofosbuvir. There is public outcry when the cost is revealed to be US$84,000 for a 12 week course of treatment. Some health insurers and US State Governments try to limit their exposure by restricting access to treatment for people with limited liver disease to reduce cost.
on 20 December 2015, Australian Health Minister Sussan Ley announced the new drugs are to be listed on the Pharmaceutical Benefits Scheme from 1 March, subsidised by the Australian Government. The hepatitis C communities and their
July 2014
PBAC recommends simeprevir, but rejects sofosbuvir The PBAC rejected the submission for the listing of sofosbuvir on the Pharmaceutical Benefits Scheme (PBS) for the treatment of chronic hepatitis C on the basis of unacceptably high and likely underestimated cost-effectiveness and the high and likely underestimated impact on the budget. Simeprevir is, however, recommended.
representative organisations advocated strongly all the way for approval and listing of these long-awaited treatments. The push was made for Equal Treatment Access so that all people in Australia can receive the new treatments, without
2013
2014
restriction based on treatment history or liver disease stage. Hepatitis Victoria sincerely thanks, in
May 2014
August 2014
particular, our Community Advocates
Hepatitis Victoria calls for public submissions to PBAC: Round 1
Equal Treatment Access
for the big part they played in this treatments advocacy and to the many people affected by hepatitis C who signed the ETA Petition, wrote submissions to the PBAC, wrote to and met with Parliamentarians, gave evidence at hearings and wrote submissions to the Parliamentary Inquiry, and gave TV, radio and newspaper interviews. Hepatitis Victoria congratulates and thanks the Hon Sussan Ley MP, Minister for Health for her strong support for all people in Australia living with hepatitis C. What follows is a timeline of how advocacy and other events shaped this historic outcome.
16
Hepatitis Victoria calls on members of the public to make submissions to the Pharmaceutical Benefits Advisory Committee (PBAC) in support of new drugs sofosbuvir and simeprevir. The PBAC is delighted although perhaps a bit unprepared for the level of public interest in their process.
Five people with hep C, four hours of filming, three afternoons spent editing for a two minute video clip produced by one brilliant film maker JJSplice, all to illustrate the case for Equal Treatment Access. A picture is worth a thousand words but on social media a good movie can be a powerful call to action.
22 January 2015 Commonwealth Parliament holds inquiry into hep C
26 November 2014
New treatments could eradicate
Local & International
hepatitis C
support for ETA petition
Over 110,000 people with hep C have already been cured in the United States and Europe where sofosbuvir has been approved. Which leaves Australians living with hepatitis C asking: Why
1,300 people sign the ETA petition in just ten days. Hundreds of Australians and people from all over world including the US, UK, India, Vietnam, New Zealand, Canada, Singapore, the Philippines, Israel, Norway, the Netherlands and Saudi Arabia support the petition because they believe in Equal Treatment
Experts believe new treatments could mean the eradication of hepatitis C “within our lifetimes”. But they say their vision will only become reality if there’s a worldwide effort to make the new remedies available to all. The global call comes as top clinicians from around Europe gather ahead of the first Five Nations Conference on HIV and
The Commonwealth Parliament’s House of Representatives Standing Committee on Health conducts an inquiry into hepatitis C. This inquiry calls for public submissions on important hep C matters including: prevalence and testing; treatment in primary care, acute care, Aboriginal Medical Services and in prisons; long and short term impacts of hepatitis C; prevention of new infections; stigma and discrimination. Hepatitis Victoria helps community members to make submissions, and on 21 January, we support half a dozen people tell their own experiences of living with hepatitis
are we so far behind?
Access.
Hepatitis in London.
C to a public hearing in Melbourne.
October 2014 Why is Australia so far behind?
12 December 2014
2015 13 November 2014
1 December 2014
8 January 2015
28 January 2015
ETA petition launched
Small Step forward as simeprevir
New Health Minister
The online Equal Treatment Access petition is launched. Hepatitis Victoria and the other State and Territory Hepatitis organisations jump on board and share it with people living with
is listed on PBS
Sussan Ley, MP for Farrer, is appointed as Federal Health Minister replacing Peter Dutton. The ETA petition has reached over
PBAC to reconsider sofosbuvir, and consider other new treatments: Round 2
hepatitis C across Australia.
The Australian Government lists simeprevir on the PBS. Simeprevir will go on to benefit a small number of people then waiting for treatment, with use limited given it still required the use of interferon injections. However, the much larger gains which are possible with other new interferonfree drugs, such as sofosbuvir, continue to be denied to Australians living with chronic hepatitis C.
3,600 signatures.
Three new hep C treatments (asunaprevir, daclatasvir, ledipasvir + sofosbuvir and sofosbuvir) are on the agenda for the March 2015 meeting of the PBAC, as well as sofosbuvir (again). Hepatitis Victoria encourages community members to take this first opportunity since the rejection of sofosbuvir last July to let the PBAC know that all Australians living with hep C deserve Equal Treatment Access.
17
April 2015 ongoing Limited access through trials, and compassionate access schemes
10 March 2015 PBAC meets to consider hep C drugs Hundreds of community members have made PBAC submissions in support of sofosbuvir, asunaprevir, daclatasvir and Harvoni for the treatment of 230,000 Australians living with hep C.
With the new drugs recommended by the PBAC but with an uncertain wait until PBS listing, the main options for people trying to access them within Australia is through clinical trials, although these are now thin on the ground, or, for people with advanced liver disease, through compassionate access schemes. All hep C pharmaceutical companies seeking PBS listing offered these programs, although the numbers were small (especially when compared to the more than 230,000 people waiting for treatment access overall).
28 July 2015 World Hepatitis Day (WHD) 20 May 2015 Health Minister shows first sign of support Health Minister Sussan Ley tells her local paper that she “will support recommendations for several new hepatitis C treatments to be listed on the Pharmaceutical Benefits Scheme”. Ms Ley told The Border Mail “she would begin working toward their inclusion on the PBS after the July meeting”.
Hepatitis Victoria, Hepatitis Australia and other state and territory hepatitis organisations say that it’s Time For Action to stop the rising death toll from viral hepatitis. Globally, the World Hepatitis Alliance highlights the alarming statistic that 4,000 people die every day from hepatitis-related liver disease. The key message is that “Now is the time for all Governments to help ensure all people living with hepatitis B and C who need treatment are able to access it”.
2015 27 April 2015
15 May 2015
1 June 2015
Positive recommendations from PBAC
Greg Jefferys blogs about personal importation of hep C meds
More new treatments on the PBAC agenda: Round 3
Good news! The PBAC recommends that new hepatitis C treatments sofosbuvir, sofosbuvir/ ledipasvir and daclatasvir/ sofosbuvir should be listed on the PBS. But there’s a catch: acceptable prices for these drugs still need to be negotiated between the Government and the companies involved. Government then needs to agree to list them on the PBS, which means we could be months, or even years, away from PBS listing.
18
Frustrated at the high prices of sofosbuvir internationally and the lack of availability in Australia, Tasmanian Greg Jefferys heads to India to investigate potential sources of generic versions of sofosbuvir to cure his hep C. He blogs his journey in the hope that the information he discovers will be helpful to other people who also want to pursue personal importation, and that it puts pressure on the big drug companies to lower their prices.
Another new treatment called Viekira Pak is on the agenda for the July 2015 meeting of the PBAC. Hepatitis Victoria once again encourages people to make a submission telling PBAC why it should be approved – and despite an understandable level of ‘submission-writing fatigue’, many community members answer the call (thank you!). More treatments mean more choice for people with different genotypes, different levels of cirrhosis and different treatment histories, as well as those who are co-infected with HIV or hep B.
22 August 2015 FixHepC opens for business Tasmanian Dr James Freeman and his father (also a doctor) set up FixHepC Buyers Club to provide affordable treatment for hepatitis C in Australia for around $2,000. The Club assists Australians to import the Approved Pharmaceutical Ingredient (API) in sofosbuvir, ledipasvir and daclatasvir from China and have them compounded (made into tablets) in Australia. Taking advantage of the regulatory framework in Australia, where it is legal for a patient to import a 12 week supply of medication for their own use, the Buyers Club assisted people who were not prepared or able to wait for PBS listing to navigate this process.
24 August 2015 PBAC Recommends Viekira Pak More good news! Another interferonfree drug combination has been recommended for inclusion on the PBS. This makes four interferon-free drugs/ combinations supported by the PBAC. But, Australians are STILL waiting for the first interferon-free hepatitis C treatment option to be made available on the PBS. Hepatitis Victoria calls for Government to act as this situation is unacceptable, and it is unconscionable.
October 2015
20 December 2015
Equal Treatment Access Petition delivered
Turnbull government to spend $1 billion on hepatitis C ‘miracle cures’ for all
The online ETA petition, containing over 5,000 signatures and hundreds of comments, was delivered to Federal Health Minister Sussan Ley, together with a cover letter urging her, and the Federal Government, to list new hepatitis C treatments on the PBS urgently. In that letter we also reiterated the need for these new treatments to be made accessible without restriction based on treatment history or liver disease stage so that as many people can benefit from them as possible.
The best news of all! Sussan Ley announces $1billion over 5 years in funding for new treatments for hepatitis C – sofosbuvir, sofos-buvir+ledipasvir and daclatasvir will all be listed on the PBS from 1 March 2016. The move will make Australia one of the first countries in the world to publicly subsidise the drugs for their entire population of people with hep C, no matter what the condition of a patient’s liver. No listing date is yet proposed for Viekira Pak.
2016 1 October 2015
October - November 2015
1 March 2016
Time for Action – Time for new cures campaign
Community joins Time for New Cures call
PBS Listing
Hepatitis Australia, Hepatitis Victoria, state and territory hepatitis organisations and other groups from across the sector write an open letter to Health Minister Sussan Ley indicating the urgent need to end the impasse, and to list the new hep C drugs on the PBS, so that the process of saving lives – and ultimately ending the hepatitis C epidemic in Australia – can begin.
In the absence of action from Federal Government, Hepatitis Victoria supports the nation-wide social media campaign providing images to share on Facebook & Twitter to let the Health Minister, the Hon Sussan Ley MP, know that it’s #TimeforAction. We also encourage the community to make its voice heard by writing to their local Member of Parliament to support the urgent listing of new hep C cures on the PBS. We provide a link to help find local MPs and a draft letter to download and send.
The day that the community has been waiting for is finally here – new, all oral, direct acting antiviral interferon-free hepatitis C treatments are available on the Pharmaceutical Benefits Scheme (PBS). Now is the time for people living with hepatitis C to talk to their doctor or liver specialist to find out how you can benefit from the new drugs.
Still to come The treatment landscape has changed forever on 1 March 2016, but that doesn’t mean it will stand still. Hepatitis Victoria will continue to advocate for Viekira Pak to be listed on the PBS, as an additional option depending on different genotypes or coinfection with HIV. We hope to see more hepatitis C direct acting anti-viral drugs in the PBAC pipeline during 2016, while sofosbuvir+velpatasvir (a pan-genotypic treatment option) has already been submitted for US FDA approval. As always, Hepatitis Victoria will push for these drugs to be accessible to all, so as many people as possible can be cured of hepatitis C.
19
HEPReady is here! Blank page Time to be HEPReady
EPReady is a comprehensive suite of training programs that will be
H
which information about hepatitis, care and treatment needs
progressively rolled out over 2016.
to be sensitively communicated.
The aim of HEPReady is to train community and health care workers so
Individuals attending courses are also connected to HEPLink,
that they are better able to diagnose, work with and treat viral hepatitis,
which is a professional online network where community and
increase community awareness, and empower community and health
health professionals can discuss issues regarding the care and
care workers to join in the fight to eliminate hepatitis C.
treatment of people with hepatitis.
With the new hepatitis C treatments becoming widely available, it has
An exciting aspect of the HEPReady initiative is the training
never been more important to train the workforce in these new treat-
provision that addresses the health organisation, as well as the
ments, and the issues surrounding the virus, so that they are in a
individual health worker. We assess the whole organisation’s
position to sensitively encourage individuals to seek appropriate testing
understanding and dealings with people with viral hepatitis, and
and treatment.
workforce training is implemented, where necessary, across the
In devising the HEPReady program, Hepatitis Victoria has had the input of its own educators who have worked with and supported thousands
board. After completion of this training program, an organisation will be accredited as ‘HEPReady’.
of people affected by viral hepatitis. We have also established a broad
In order to cater for those people who cannot attend face-to-face
expert Advisory Committee that oversees the implementation of the pro-
training, we are developing a series of online courses that can be
gram. Members include Rosemary McKenzie, Director of Teaching and
accessed and completed by an individual at a time that best suits
Learning, Melbourne School of Population and Global Health, University
them. This means that people in regional and rural settings will be
of Melbourne; Dr Kudzai Kanhatu, Refugee Health Fellow, Victorian
able to access up-to-date information about viral hepatitis issues –
Infectious Diseases Service; and adjunct Assoc. Prof. Lavinia Crooks
management, care and new treatments – without having to travel.
of ASHM.
HEPReady courses can be conducted in-house at your organisa-
The courses are designed to meet the highest quality standards in terms
tion, or you can attend the regular sessions at the Hepatitis Victoria
of content and presentation. Each course includes content that has been
training facility.
developed with experts in their field - from epidemiology to the latest treatments. The University of Melbourne, School of Population and Global Health, is also conducting a comprehensive evaluation of the implementation of the HEPReady program. Importantly our courses include a Q&A session with a person who has lived the experience of hepatitis. This provides a unique insight into the personal impact of the hepatitis virus, and highlights the issues of communication, stigma and discrimination that may be part of this experience. This presentation helps course participants better understand the way in
20
To keep abreast of the range of training options as they are rolled out this year, visit the Hepatitis Victoria website: www.hepvic.org.au If you would like further information on how a HEPReady course may be implemented for your organisation please contact Reece Lamshed via email: hepready@hepvic.org.au or phone: (03) 9380 4644. To register for the next HEPReady Essentials course, visit: www.hepvic.org.au/page/1155/hepready-essentials
Introducing... HEPLink Linking the Vic hepatitis workforce HEP Essentials course a winner The first HEPReady Essentials course was held on Wednesday 2 March to a fully booked out session. HEPReady Essentials is an introductory course that covers all the important information about the hepatitis virus – liver function, the difference between hepatitis B and hepatitis C, transmission,
HEPLink is a professional network of individuals and organisations responding to viral hepatitis in Victoria. The aim is to maximise Victoria’s capacity to respond to hepatitis B and C by connecting those working in the sector. It provides access to an email discussion group, enabling members to network, and access peer-support and keep up to date with all the
privacy and disclosure, and latest treatments and medications.
relevant information around viral hepatitis.
The 15 participants attending the first Essentials course were
What does HEPLink offer?
primarily from the drug and alcohol sector. A number of participants had come to refresh their knowledge of hepatitis and to fully understand the implications of the new drug treatments for hepatitis C.
• Professional connectivity and networking • Support from other colleagues working in your area • Opportunity to share information and resources with members • Access to the only Victorian online community for workers in the viral hepatitis sector.
From the feedback gathered, all participants were very pleased with the course content and course presenter, Aurora Tang.
Membership is open to participants of any of our HEPReady courses.
Everyone was particularly engaged by the presentation from Jane,
People living with viral hepatitis are encouraged to contact
who gave a lively overview of her “lived experience”. Participant
Hepatitis Victoria on 1800 703 003 to learn about our other
comments included such things as “comprehensive”, “excellent
programs available for the community.
presenter” and “well organised”. (See testimonials below.) Hepatitis Victoria is pleased with the response. It augurs well for future HEPReady Essentials courses.
HEPLink is moderated by Hepatitis Victoria to control the number of postings sent to members and to maintain relevance of the correspondence. To find out more about HEPLink go to:
The next HEPReady Essentials course is scheduled for:
9.30 am – 11.30am, May 18, 2016 at the Hepatitis Victoria premises (the April session is completely booked out).
Testimonials The course provided me with information on new medications for Hepatitis C. Cristina Francioli, Odyssey House
The information was delivered simply and often repeated. We had quizzes, and it used different types of learning – pictures, videos, diagrams, etc. Questions were encouraged. Linda Cropley, Royal District Nursing Service Homeless Persons’ Program.
https://www.hepvic.org.au/page/1141/heplink
… and… HEPSpeak Hepatitis Victoria’s Public Speakers Bureau has been rebadged as HEPSpeak. Despite a change in the name, this program will continue to offer access to a unique group of courageous hepatitis survivors, who are willing to share their personal story.
HEPSpeak program benefits:
• Choose from a diverse group of people with “lived” experience •
of hepatitis B & C to suit your training needs and audience
Flexibility to modify the content of the session based on the training needs and participants
• Opportunity for the audience to understand the impact, including •
the stigma and discrimination, of hepatitis through a real life example
Opportunity for the audience to interact with the speakers to discuss their experiences with treatments, health care professionals and community
• Access to well trained, mentored and experienced speakers,
who are the ‘Human face of viral hepatitis’, at a reasonable price
HEPSpeak and HEPLink, HEPReady work together to provide a three pronged solution to organisations that want to respond more effectively to hepatitis B and hepatitis C.
21
How healthy is your weight? Body Mass Index is a quick, easy way to check
D
uring February Hepatitis Victoria celebrated Australia’s Healthy Weight Week, helping raise awareness about the importance of maintaining
a healthy weight and balanced diet. Obesity and excess weight directly affect the liver, adding extra pressure for those
Healthy weight calculator
who live with viral hepatitis. Furthermore, obesity increases the risk of other chronic conditions, such as heart disease. It is important to assess how healthy your weight is and keep track of it regularly to notice any weight gain or loss that might motivate you to make healthier lifestyle choices. Body Mass Index (BMI) is an easy and quick way for adults to check their weight status. On the chart at right, find your weight (without shoes and in light clothing) on the left of the chart and your height (without shoes) on the bottom. Draw lines from each one until the point they meet that is your BMI. *
Please note this is a screening tool and works for most Australian adults but there are some exceptions. If you have concerns about the result, seek advice from your Doctor or a Dietitian. Another easy way for adults to find out their weight-related risk is to measure waist circumference. Research shows that fat accumulated around your waist is associated with an increased risk of metabolic diseases (such as cardiovascular conditions and diabetes). Grab a measuring tape and measure halfway between your lowest
Here’s the good news!
rib and the top of your hip bone, roughly in line with your belly button.
If you got:
The good news is that most weight-related illness is preventable by following a healthy
Men less than 94cm, Women less than 80cm
lifestyle: eating a balanced diet, keeping
Your weight-related health risk is low
yourself physically active, quitting smoking
Men between 91 – 102cm, Women between 80 – 88cm
in sugar, alcohol, fat or salt.
and avoiding food or drinks which are high
Your weight-related health risk is increased, particularly if your BMI >25
Men over 102cm, Women over 88cm
Your weight-related health risk is high
22
* BMI information sourced from the Australian Dietary Guidelines: https://www.eatforhealth.gov.au/sites/default/files/files/the_guidelines/n55a_australian_dietary_guidelines_summary_131014.pdf
Eat healthy! Here are some liver loving recipes to enjoy!
Wholemeal Savoury Muffins with Spinach and Sunflower Seeds Preparation time: 20 minutes Cooking time: 35 minutes Makes: 24 Storage: Air-tight container Ingredients
• 1 egg • 185g wholemeal self-raising flour • 250ml soy milk • 70g firm tofu, diced • 3 tbsp shallots, chopped • 5 button mushrooms, finely chopped • 100ml olive oil • 50g cooked spinach, chopped • 2 tbsp sunflower seeds • 1 tsp salt Method 1. Preheat oven to 190°C. 2. Beat egg, add to flour, then stir in other ingredients 3. Spoon mix into greased muffin tins 4. Bake for 35 minutes, until golden brown 5. Serve hot with homemade pumpkin, carrot and potato soup. Sourced from: http://www.soylife.com.au/recipes/
Chicken Risotto Preparation time: 10 minutes Cooking time: 30 minutes Serves: 4-6 Storage: Covered in the fridge or freezer Ingredients
• 1 onion, diced • 1/2 tablespoon olive oil • 1 teaspoon minced garlic, or 1 clove, crushed • 400g chicken breast or thigh, trimmed of fat and cubed • 2 cups Arborio rice • 5 cups salt-reduced chicken stock • 2½ cups button mushrooms, sliced • 1 small floret broccoli • 1/4 cup white wine • Pepper to season • 2 cups baby spinach leaves Method 1. In a large saucepan or pot, fry the onion and garlic in the oil over medium heat for about 3 minutes 2. Add chicken and stir until browned. 3. Add rice and stir for 5 minutes, until rice changes colour slightly 4. Add the wine and stir until absorbed 5. Add 1 cup of stock and stir until absorbed 6. Add the broccoli and another cup of stock, stir until absorbed 7. Add mushrooms and the remaining 2 cups of stock, one at a time – making sure the liquid has been absorbed before adding more 8. Test the rice – if it is not cooked, add water as required 9. Remove from the heat, season with pepper, stir through the spinach and serve.
23
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 Princess Highway, 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 210 Stuart Street, Ballarat Contact: (03) 5338 4500 or (03) 5320 7500 Fax: (03) 5332 4572
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
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Cranbourne Integrated Care Centre 140-154 Sladen Street, Cranbourne Contact: (03) 5990 6789 Fax: (03) 9594 6245 Maroondah Hospital (Eastern Health) Davey Drive, Ground Floor Outpatients, East Ringwood Contact: 1300 342 255 Fax: (03) 9871 3202
ELTHAM North Eltham Medical Centre Dr Tony Michaelson Weekly visiting Hepatitis C Nurse Rhonda O’Malley 1170 Main Rd, Eltham Contact: (03) 9439 2222 Fax: (03) 9439 3662
EPPING Northern Hospital 185 Cooper Street, Epping Contact: (03) 8405 8000 Fax: (03) 8405 8524
FITZROY St Vincent’s Hospital 35 Victoria Parade, Fitzroy Contact: (03) 9231 3475 Fax: (03) 9231 3489
FOOTSCRAY
Bellarine Street, Geelong Contact: (03) 5246 5117 Fax: (03) 5221 3429 Central Gippsland Health Service 155 Guthridge Parade, Sale Contact: (03) 5143 8600
HEIDELBERG Austin Hospital 145 Studley Road, Heidelberg Contact: (03) 9496 2787 Fax: (03) 9496 7232
West Heidelberg Banyule Community Health Centre Hepatitis C Outreach Clinic as part of Austin Health. Dr Daljean Sandhu, weekly visiting Gastroenterologist and Hepatitis C Nurse. 21 Alamein Road, West Heidelberg Contact: (03) 9496 6846 Fax: (03) 9496 2732
MAROONDAH Maroondah Hospital (Eastern Health) Out-Patients, Ground Floor, Davey Drive, Ringwood East Contact: 1300 342 255 Fax: (03) 9871 3202
MILDURA Mildura Infectious Diseases Unit 234 Thirteenth Street, Mildura Contact: 0408 581 781
Western Hospital Gordon Street, Footscray Contact: (03) 8345 6291 Fax: (03) 8345 6619
PARKVILLE
FRANKSTON
Contact: (03) 9342 7212
Peninsula Liver Clinic 141 Cranbourne Road, Frankston Contact: (03) 9770 0139
PRAHRAN
Royal Melbourne Hospital Corner Royal Parade and Grattan Streets, Parkville Fax: (03) 9342 7277 Alfred Hospital Infectious Diseases Department 99 Commercial Road, Prahran Contact: (03) 9076 2359 Fax: (03) 9076 2194
Contacts SANDRINGHAM Bayside Hepatitis Clinic (Alfred Hospital) 193 Bluff Road, Sandringham Contact: (03) 9076 2259 Fax: (03) 9076 2194
SHEPPARTON Goulburn Valley Health Centre
Community-based hepatitis C treatment services
St Kyrollos Family Clinic
Community based treatment clinics have
Contact: (03) 9386 0900
been developed to enable more people to access treatment in their local communities.
Dr Ashraf Saddik Monthly visiting Hep C Nurse 2A Moore Street, Coburg
Werribee Mercy Hospital Consulting Suites
Barkly Street Medical Centre
300 Princess Hwy, Werribee
Contact: (03) 5832 3600
Dr Elizabeth Leder
Contact: (03) 9288 2171
Fax: (03) 5831 6032
Dr David Iser visits monthly
Fax: (03) 9288 3596
50 Graham Street, Shepparton
SPRINGVALE Springvale Community Health
60 Barkly Street, St Kilda Contact: (03) 9534 0531
Primary health care centres (for people who use drugs)
55 Buckingham Street, Springvale
Cohealth (formerly North Yarra
Contact: (03) 9594 3088
Community Health)
Fax: (03) 9594 2273
75 Brunswick Street, Fitzroy
TRARALGON
Contact: (03) 9411 3555
Access Health
Latrobe Regional Hospital
Cranbourne Integrated Care Centre
Primary health care and needle syringe
Private Consulting Suites 3 and 4
Hepatitis Outreach treatment clinic
Princes Highway, Traralgon West
140-154 Sladen Street, Cranbourne
Contact: (03) 5173 8111
Contact: (03) 03 5990 6789
Fax: (03) 5173 8097
Fax: (03) 03 5990 6328
WARRNAMBOOL
Gateway Community Health
Warrnambool Physicians’ Rooms
155 High St, Wodonga
St John of God
Contact: (02) 6022 8888
Warrnambool Hospital,
Fax: (02) 6024 5792
Health Works
Health Works
syringe program
Suite 4, Wentworthh Street Consulting Rooms, Warrnambool Contact: (03) 5562 9444 Fax: (03) 5561 2699
WODONGA Murray Valley (Private) Hospital Nordsvan Drive, Wodonga
4-12 Buckley Street, Footscray
Primary Needle Syringe Programs
program for marginalised/street based injecting drug users, street sex workers and people experiencing homelessness. Hepatitis C information, support and treatment 31 Grey Street, St. Kilda Contact: (03) 9536 7780
Primary health care and needle Hepatitis C information, support
Contact: (03) 9362 8100
and treatment
Living Room
4-12 Buckley Street, Footscray
7-9 Hosier Lane, Melbourne Contact: (03) 9945 2100
Contact: (02) 6056 3366
North Richmond Community Health
Fax: (02) 6056 3466
Dr John Furler Weekly visiting Hep C Nurse 23 Lennox Street, Richmond Contact: (03) 9418 9800
Contact: (03) 9362 8100 www.wrhc.com.au/Services_HEALTH.html Inner Space Primary health care and needle syringe program Hepatitis C information, support and treatment. 4 Johnson Street, Collingwood
Nunawading Clinic
Contact: (03) 9468 2800
176 Springvale Road, Nunawading
www.nych.org.au/services/drug.html
Dr David Ross GP s100 prescriber for HCV and Opiate Replacement Program Contact: (03) 9878 9191
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Contacts Living Room Primary health care and needle syringe program Hepatitis C information, support and treatment services 7-9 Hosier Lane (off Flinders Lane), Melbourne Contact: (03) 9662 4488 www.youthprojects.org.au
Related Health Services
Regional services
Penington Institute - formerly ANEX
These contacts are able to provide
(Association for Needle Exchanges)
information about local viral hepatitis
95 Drummond Street, Carlton
related services.
Contact: (03) 9650 0699
Ballarat Community Health
Harm Reduction Victoria (HRV)
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/
Contact: (03) 5454 6000
Turning Point 54-62 Gertrude Street, Fitzroy Contact: (03) 8413 8413 Email: info@turningpoint.org.au Web: www.turningpoint.org.au
Indigenous Health Ngwala Willumbong Co-op Limited 93 Wellington Street, St Kilda Indigenous drug and alcohol service Contact: (03) 9510 3233 Email: reception@ngwala.org VACCHO (Victorian Aboriginal Community Controlled Health Organisation) 17 - 23 Sackville Street, Collingwood Contact: (03) 9411 9411 Email: wendyb@vaccho.com.au Web: www.vaccho.org.au Victorian Aboriginal Health Service 186 Nicholson Street, Fitzroy Contact: (03) 9419 3000
Sexual Health Melbourne Sexual Health Centre 580 Swanston Street, Melbourne Contact: (03) 9341 6200 Free call: 1800 032 017 Multicultural Health and  Support Service, HIV, hepatitis C and sexually transmissible infections 23 Lennox Street, Richmond Contact: (03) 9418 9929 Go to: www.ceh.org.au/mhss.aspx
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HIV/Hepatitis/STI Education and Resource Centre at the Alfred Moubray Street, Prahran Statewide resource centre on HIV/AIDS, Hepatitis and Sexually Transmissible Infections Contact: (03) 9076 6993 Web: www.alfredhealth.org.au
Multilingual Hepatitis C Resources This website has over 400 pages of hepatitis C and HIV information in 18 languages. www.multiculturalhivhepc.net.au Health Services Commissioner 30th Floor, 570 Bourke Street, Melbourne Freecall: 1800 136 066 Email: hsc@health.vic.gov.au 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 Victorian Viral Hepatitis Educator Training for Doctors, Nurses and other health professionals Contact: (03) 9288 3586 0407 865 140
Barwon Health Drug and Alcohol Services Contact: (03) 4215 8700 Bendigo Health Camperdown Hepatitis C Support worker Jo Sloetjes Contact: (03) 5593 3415 Email: camperdown.resource@svdp-vic.org.au Jigsaw Youth Health Service (Barwon Health Geelong) Rochelle Hamilton Contact: 1300 094 187 Latrobe - Mobile Drug Safety Worker Helen Warner 0438 128 919 Mildura - Sunraysia Community Health Anne Watts Contact: (03) 5022 5444 Email: schs@schs.com.au Moe Community Health Centre Contact: 1800 242 696 Portland - Glenelg Southern Grampians Drug Treatment Service Bev McIlroy Contact: (03) 5521 0350 Shepparton Community Health Contact: (03) 5823 3200 Wangaratta - Ovens and King Community Health Centre Diane Hourigan Contact: (03) 5723 2000
Contacts 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,
What is Hep Connect? Hep Connect provides an opportunity for people with viral hepatitis to mutually discuss their experience with a trained peer volunteer over the telephone. All peer volunteers have experience of living with viral hepatitis including 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 viral hepatitis
•
Assist people’s decision making process around management and treatment
•
Enhance people’s capacity to cope with treatment
•
Assist people to manage living with cirrhosis
•
Reduce isolation and increase overall hepatitis support.
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
Become a member
of Hepatitis Victoria now Hepatitis Victoria is a membershipbased organisation - our members are the heart of our organisation. Membership fees help support and recognise our work in raising awareness of and understanding about viral hepatitis.
JOIN TODAY!
Go to: http://www.hepvic.org.au/ page/46/membership and follow the prompts.
Membership benefits include:
• Access to the latest information and resources
• Receipt of electronic and printed publications
Individual $40
*Concession card holders- $15 *With lived experience - $0
Organisation $160 *10 staff or less - $100
• Invitations to special events and seminars
• Shaping advocacy campaigns and ‘change’ initiatives
Supporter $0
*Cannot vote or stand for Board
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Hepatitis Infoline Call the Hepatitis Infoline to talk about: Information: We can answer questions and mail information to you. Support: We can provide support for a range of issues and concerns. Referral: We can refer you to other organisations and services. The Hepatitis Infoline is a free and confidential service for all Victorians. Hours Monday to Friday 9.00am – 5.00pm
1800 703 003 Your donations make a difference!
Y
our donations help us to provide information, services, advocacy, resources and support for people affected by viral hepatitis, health 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:
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28
Suite 5, 200 Sydney Road
Brunswick, Victoria 3056