P E H e h T R O T C FA WORLD HEPATITIS DAY 2016 WRAP UP
NEW HEP C TREATMENTS YOUR QUESTIONS ANSWERED
AFTER THE CURE RECALIBRATION
QUEENSLANDâ€™S HEPATITIS MAGAZINE
VOLUME 16, AUGUST 2016
CONTENTS 04 New hepatitis C treatments Your questions answered.
08 Next step: Recalibration
Life after being cured.
10 Hepatitis Queensland turns 21
Looking back to where it started.
14 World Hepatitis Day
2016 wrap up
16 2016 Stats & Facts
Hep B & C infographic
18 News Roundup
The latest global news
20 Hepatitis Queensland
26 News from the North
SHARE YOUR STORY Make a difference in people’s lives and share your story. You don’t have to write like Shakespeare, just be yourself. Contact Jessie on firstname.lastname@example.org or 07 3846 0020. delay, get a blood test today.
ever shared a needle or razor, we need to talk about hepatitis C. often no symptoms or warning signs. But left undetected, it can lead to cirrhosis, age, cancer and even death. Thanks to the latest antiviral treatments available Theof Hep Factor • www.hepqld.asn.au our GP, you now have a 2 95%•chance being cured.
ested, talk to your GP or visit health.qld.gov.au/hepc
need to talk about Hep C.
CHAT & Cairns Sexual Health news
FROM THE CEO CALLING ON THE COMMUNITY I am still reeling from the great news that over 3,200 Queenslanders have been treated for hepatitis C (HCV) between March and June this year with the new treatments – compared to 2,000 treated annually in Australia before that. That is a huge increase. An astronomical improvement, for which we can thank community advocacy, clinicians and the federal government. This win in HCV is complemented by a win in hepatitis B (HBV) that now allows people to get their scripts dispensed through community pharmacies. We now have to make the most of the opportunities these changes offer by ramping up the rate of testing and encouraging people to seek treatment. We need your help to do this. It is estimated that about 47,000 Queenslanders have HCV and about 38,000 have HBV. We need to help by doing what we can to inform them of the facts about testing and treatment. We cannot reach every one of these people - we need your help. So I am asking you - each member of Hepatitis Queensland, and everyone who receives this edition of The Hep Factor - to encourage 10 people you know, if they have any risk factors to ask their GP for a blood test and to seek treatment. What are those risk factors? They are all related to the possible sharing of even the smallest amount of blood, through: •
shared injecting equipment
unsterile tattooing or body piercing
surgical procedures overseas, or before blood screening in Australia in 1990
unsafe anal sex, or sex with exposure to blood
sharing things that could have the smallest bits of blood on them, such as razors, clippers or toothbrushes.
Many people feel embarrassed about HBV and HCV, and I can understand that is a human reaction to possible discrimination. But these are simply viruses, and we need to work towards community acceptance of the need to treat health conditions without judgement.
The HEP FACTOR Editor Jessie Badger Hepatitis Queensland Board Dr Alison Stewart (President) Mr Kaveen Bachoo (Treasurer) Ms Morag Goodinson (Secretary) Ms Tanya Bain Dr Paul Clark Ms Yvonne Drazic Ms Pam Muir Dr Andrew Smirnov Mr Ken Wallis Hepatitis Queensland Staff Clint Ferndale - CEO Jessie Badger Harriet Doran Edmunds Lana Richardson Sandy Shearer Stephanie Tugade (student placement) Jodie Walton Sam White Sandra Wortlehock Hepatitis Queensland Infoline: 1800 437 222 Office: 07 3846 0020 PO Box 3490 Suite 2, 12 Cordelia Street South Brisbane Qld 4101 email@example.com www.hepqld.asn.au facebook.com/hepqld twitter.com/hepqld The Hep Factor could not be produced without the support of Queensland Health.
Can you help us spread the word? I hope so.
CLINT FERNDALE CEO - HEPATITIS QUEENSLAND
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4 • The Hep Factor • www.hepqld.asn.au
NEW TREATMENTS FOR HEPATITIS C YOUR QUESTIONS ANSWERED
ustralia is leading the way when it comes to treating hepatitis C. We are the first country to make the new, direct acting antiviral (DAA) medications available to everyone over the age of 18 who has hepatitis C. These interferon-free treatments are a welcome relief for many with shorter treatment duration, very few side effects, and very high cure rates, compared to older treatments. Plus these new medications are available on the Pharmaceutical Benefits Scheme (PBS). By investing in Hepatitis C treatments we are approaching the tipping point. With increased treatment access, and GPs now able to prescribe, we are facing a new reality where we can leave behind a disease that kills over 600 people in Australia every year, and we can work towards eliminating
hepatitis C nationwide within 10-15 years. With the advent of these new treatments comes a range of questions which we have endeavoured to answer here. What new treatments are available for people with hepatitis C? The following treatments are now available in Australia: • sofosbuvir + ledipasvir (Harvoni®) • sofosbuvir (Sovaldi®) • daclatasvir (Daklinza®) • ribavirin (Ibavyr®) • paritaprevir + ombitasvir + dasabavir (with or without ribavirin) (Viekira Pak®). Are the new treatments better than the older ones? Yes, there are a number of benefits, to the new medications. They are • more effective, resulting in a cure for over 95 per cent of people
• • •
taken as tablets only have very few side effects taken for as little as eight to twelve weeks for most people.
Are the new treatments restricted or limited in any way? No. Interferon-free treatments are now available for all major genotypes in Australia. The new treatments are available through the PBS to all adults with chronic hepatitis C who hold a Medicare card, including people in prison. These new medications can be used in much later stages of liver disease, compared to the old treatments. What genotypes can be treated with the new medications? Genotypes 1, 2 and 3 are the most common in Australia, can be treated with the new interferon-free treatments. Those with genotype 4, 5 and 6
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may still need pegylated interferon, however new interferon-free treatments for all genotypes have now been developed. These are called pan-genotypic medications. They will be considered by the Pharmaceutical Benefits Advisory Committee in Australia later this year. How long will I be on treatment? The table to the right is a guide for how long your treatment might be. Treatment duration depends on many factors such as what genotype you have, which combination of medications you will need, if you have done treatment before, and your level of liver damage. Can I get treatment from my GP? Yes, GPs can now prescribe hepatitis C treatment. They will have to consult with a specialist clinician (gastroenterologist, infectious disease physician or hepatologist). People
with cirrhosis or more advanced liver health issues will continue to be treated by a specialist at a liver clinic. Some places in Queensland also have hepatitis C treatment programs running, such as aboriginal medical services, community health centres, sexual health clinics, and needle and syringe programs. It is your choice where you have treatment. How do I find a GP? Hepatitis Queensland has created a treatment directory showing GPs and medical centres who are known to prescribe the new medications. The list available is by no means complete and is constantly being updated with new prescribers. The treatment directory can be found at www.hepqld.asn.au/directory. How do I fill my script for treatment? Pharmacies in the community can now
dispense hepatitis C treatment scripts from your GP. Try to fill your scripts at the same pharmacy every time, so choose one close to where you live. See the Hepatitis Queensland Treatment Directory for pharmacy locations at www.hepqld.asn.au/directory. This directory is being continually updated as more location become available. However, if you are getting treated by a specialist at a Queensland liver clinic, you will need to pick up your treatment at the hospital pharmacy. Can people who currently inject drugs access the new treatment? Yes, people who inject can access treatment while they are still using and are a priority for hepatitis C treatment. When considering treatment, think about doing it with your partner or friends to reduce the chance of getting hepatitis C again. For more information about
NEW HEP C TREATMENTS FOR GENOTYPES 1, 2 & 3
SOFOSBUVIR & LEDIPASVIR
SOFOSBUVIR & RIBAVIRIN
SOFOSBUVIR & DACLATASVIR
(SOVALDI® & IBAVYR®)
(SOVALDI® & DAKLINZA®)
(PARITAPREVIR, RITONAVIR, OMBITASVIR & DASABUVIR)
OF PEOPLE CURED
6 • The Hep Factor • www.hepqld.asn.au
OF PEOPLE CURED
OF PEOPLE CURED
sometimes with Ribavirin
OF PEOPLE CURED
SOFOSBUVIR & LEDIPASVIR (HARVONI®) 8 weeks for people who haven’t done treatment before, don’t have cirrhosis, and a viral load less than 6 million IU/ml 12 weeks for people who haven’t done treatment before, don’t have cirrhosis, and a viral load more than 6 million IU/ml 12 weeks for people who haven’t done treatment before and who have cirrhosis 24 weeks for people who have done treatment before and who have cirrhosis.
SOFOSBUVIR & DACLATASVIR (SOVALDI® & DAKLINZA®) 12 weeks (although likely longer for people who have cirrhosis) 24 weeks for people with genotype 3 who have cirrhosis
SOFOSBUVIR & RIBAVIRIN (SOVALDI® & IBAVYR®) 12 weeks for people with genotype 2
SOFOSBUVIR & DACLATASVIR (SOVALDI® & DAKLINZA®) Plus Ribavirin 12 to 16 weeks for people with genotype 3 and who have cirrhosis
VIEKIRA PAK® (PARITAPREVIR, RITONAVIR, OMBITASVIR & DASABUVIR) 12 weeks for people with genotype 1b who don’t have cirrhosis 12 weeks for people with genotype 1b with compensated cirrhosis
VIEKIRA PAK® (PARITAPREVIR, RITONAVIR, OMBITASVIR & DASABUVIR) Plus Ribavirin 12 weeks for people with genotype 1a who don’t have cirrhosis 12 weeks for people with genotype 1a with cirrhosis 24 weeks for people with genotype 1a with cirrhosis who have done treatment before and were null responsers
accessing treatment in a needle and syringe program (NSP) contact QuIHN on 1800 172 076.
From 1 January 2016 this is $38.30 for general patients and $6.20 for concessional patients.
Are people in prison able to access the new treatment?
Interested in finding out more? For those living with hepatitis C: If you have a question, email Hepatitis Queensland at firstname.lastname@example.org or call the infoline on 1800 HEP ABC (1800 437 222).
Yes, treatment is available for people in prisons as they are a priority population for hepatitis C. To access treatment in prison put a request form into Medical. People in prison usually need to start and finish their treatment inside. Call Hepatitis Queensland on the free prison phone line (#12) if you have any further questions or would like an information pack sent to you. How much will treatment cost? You will only be charged the usual co-payment to fill a prescription.
For clinicians For further clinical information see www.gesa.org.au or go to www.spotonhealth.org.au for the latest care pathways, resources and professional development for treating hepatitis C. For education see www.ashm.org.au.
To download the full hepatitis C treatment factsheet, visit www.hepqld.asn.au. Hepatitis Queensland would like to acknowledge Hepatitis Australia and Hepatitis NSW for their permission to adapt existing factsheets to provide this information.
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WHY BEING CURED ISN’T THE END OF THE JOURNEY
NEXT STEP: RECALIBRATION by Lana Richardson, Hepatitis Queensland
After years of having hepatitis C control so much of your life… How do you just get up and walk away like nothing has happened?” 8 • The Hep Factor • www.hepqld.asn.au
As people are completing treatment and more people are curing hepatitis C than ever before, here at Hepatitis Queensland we are having more and more conversations about moving forward in life without hep C. It is something that doesn’t get discussed often enough. Specialists, liver clinic nurses and GPs are focused on the clinical aspect of treatment, how many pills to take, when to take them, and the cure rates. But the conversation about what life might look like after treatment, is a conversation that is just as important. For those who have had hep C for
many years it becomes much more than just a health issue. Once the hep C is gone, people often need to develop new ways to manage and move forward. This is recalibration. The virus becomes part of their armour, their decision making process. It is often described to us as a being a big part of what defines them as a person. They have experienced high levels of discrimination and stigma, they have lost jobs, they have lost relationships and family members. The virus is gone, but after 20 years of shame and stigma how can everything just be different tomorrow
It has defined who I am. I’m terrified of being cured. Who will I be then?”
– how can they wake up and pretend this hep C journey never happened? There is also an identity shift that can take place after treatment. Successfully clearing hep C allows people to start again so to speak. A clean slate, as it is sometimes described. Many people look at being hep C free as a reason not to return to old ways, old networks and move forward with things that they see as more positive, such as new jobs, returning to study or rebuilding relationships with lost family and friends. This can be a positive and exciting step forward but this can also be a scary thought - change can be hard. Some people will celebrate or have a party when they clear the virus but for others that idea is far from reality. Many people feel overwhelmed about such a big life change. They also feel
that something is wrong with them for not wanting to jump for joy after they have cleared hep C. These mixed feelings often bring about high levels of emotion and sometimes sadness. People often share with us that they think they are ‘supposed’ to be happy and then become upset, mad or feel stupid for not feeling this way. For others the idea of being hep C free can cause feelings of guilt about actually being clear. Often people feel guilty that they have cleared the virus while others have not. Many people will be grieving for something that is hard to explain or discuss with others. For many it can be a slow process to come to terms with being hep C free. It can be an exciting, wonderful and life changing time. It can also be a huge adjustment. It is a milestone to have cured hep C, but be kind to yourself if you are
still coming to terms with such a big change. It can take time to understand what it means for you. It took time to get where you are now, so it is ok to take time to move forward to the next step.
It is important to take
time for yourself and don’t feel that you have to rush these feelings and adjust to the new you! Some tips that may help make the recalibration a little bit easier… take a trip, take time just for you, practise self-care, create a vison board of what direction you want to move in, write your feelings down then throw them away, or even burn them, talk to someone you trust, such as a friend, family member or even a counsellor. You can also call the Hepatitis Qld infoline on 1800 HEP ABC (1800 437 222) anytime Monday to Friday 9am to 5pm to talk to one of our staff.
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HEPATITIS QUEENSLAND • Hepatitis C Council of Queensland formed • Inaugural meeting • Organisation is incorporated • Office opens at 308 Edward St, Brisbane CBD • First Queensland Hepatitis C Awareness Week • Audio cassette tapes of support group meetings available to purchase
• Name change to Hepatitis Council of Queensland • New office in 30 Herschel St, North Quay officially opened by Brisbane City Council Mayoress Lisa Newman. • First Queensland HIV, Hepatitis C, and Sexually Transmissable Infections Strategy released
2005 • Office move to 276 Edward St, Brisbane CBD • First Australasian Conference on Hepatitis C, Sydney. Conference speaker quoted as saying: “...there is no vaccine, no cure, limited treatment options, and related issues of discrimination against hepatitis C positive people...”
TIME TO CELEBRATE! We take a look back at the history of Hepatitis Queensland and where it all started
10 • The Hep Factor • www.hepqld.asn.au
As we celebrate the 21st anniversary of Hepatitis Queensland this year, we take a moment to look back at how the organisation came to be and what’s changed along the way. Originally called the Hepatitis C Council of Queensland, the organisation emerged in 1995 from a support group of people with hepatitis C in Brisbane who wanted to help other people with the virus across the state. The council
TURNS 21 • December 15 - Government announces new direct acting antiviral, interferon-free hepatitis C treatments to be listed on Pharmaceutical Benefits Scheme (PBS) • March 16 - New treatments available on PBS • May 16 - Additional treatments added to PBS
2015-16 • Office moves to 12 Cordelia St, South Brisbane • Name change to Hepatitis Queensland
HEPATITIS QUEENSLAND TIMELINE: 1995 - 2016
was incorporated the same year, and was able to receive money from funding bodies to employ its first staff member. With strong momentum and enthusiam the organisation set its aims high. This included: • facilitating hepatitis C support
• • •
groups across the state, providing information to members of the public, helping prevent transmission, raising public awareness of the disease and its medical and social ramifications providing support and counselling to hepatitis C
positive people and their significant others, providing information and education to primary health care workers, and, providing advocacy for those with an interest in hepatitis C.
In 1995, Hepatitis C was seen as a
The Hep Factor • www.hepqld.asn.au • 11
Hepatitis Queensland staff: (from left) Jessie Badger, Stephanie Tugade, Clint Ferndale, Harriet Edmunds, Sandra Wortlehock, Lana Richardson
largely untreatable disease and the mostly commonly notified disease in Australia. 8,000 cases were reported in Queensland alone the previous year. For those that accessed treatment only 24 per cent received lasting benefit after undergoing three million units of interferon three times a week for six months. Jump forward twenty-one years and the landscape may have changed, but the organisation’s focus is still much the same. Now called Hepatitis Queensland to recognise an inclusive focus on all types of viral hepatitis, the organisation is still an active
12 • The Hep Factor • www.hepqld.asn.au
player in providing information, support and advocacy across the state. Having recently taken part in another successful World Hepatitis Day, we at Hepatitis Queensland are excited about the future and the real possibility of eliminating viral hepatitis within the next twenty-one years. With the availability of vaccines for hepatitis A and B, effective treatments for hepatitis B and a cure for hepatitis C, the elimination of viral hepatitis is within our reach.
In addition, the Queensland Government is finalising the Queensland Sexual Health Strategy 2016-2021 and complementary Queensland Action Plans 2016-2021 for HBV and HCV. Here’s to another twenty-one years of supporting Queenslanders who are affected by viral hepatitis.
DO YOU WANT TO MAKE A DIFFERENCE?
HEPATITIS QUEENSLAND MEMBERSHIP IT’S FREE! If you’re not already a member of Hepatitis Queensland, now is the time to join. There’s never been a better time to help shape the future of the viral hepatitis landscape by having your voice heard. As a member of Hepatitis Queensland you’ll enjoy the following benefits: • Opportunity to help shape government planning and participate in advocacy • Receive the latest industry news with our popular Hep Factor magazine plus our HQ News email newsletter • Be the first to hear about training and events happening in your area • Access our free, comprehensive resources Contact Hepatitis Queensland on 1800 437 222 or email@example.com and ask for a membership form.
WORLD HEPATITIS DAY 2016 WE TAKE A LOOK AT THE SUCCESS OF THIS YEAR’S GLOBAL MOVEMENT
orld Hepatitis Day – held on 28 July – is an annual event recognised around the globe that aims to increase awareness and understanding of viral hepatitis and the diseases that is causes. It provides an opportunity to raise awareness of viral hepatitis prevention and access to testing and treatment. The theme for the 2016 World Hepatitis Day (WHD) was “NOhep”. NOhep is a global movement to eliminate viral hepatitis; it provides a platform for people to come together and take action to ensure global commitments are met and viral hepatitis is eliminated by 2030.
• • • • • • • • • • • •
Love Your Liver event, Inala Community Health Centre Host a Meal event WHD morning tea, Sunnybank State High School “Happily Hepatitis” comedy night, Fitzy’s Loganholme Panel discussion “Changing Landscape of Hepatitis in Queensland”, St Leo’s Boardroom, University of Qld Healthy Liver Day, PCYC Logan City WHD Ground Rounds Lecture, Cairns Hospital WHD staff education, Weipa WHD morning tea, Weipa Side Step Hepatitis C Community event, Palm Island WHD BBQ, Yarrabah WHD BBQ, Thursday Island.
As a community and as individuals, there is a lot we can do in relation to hepatitis. Working in partnership with people living with hepatitis, we can encourage others to understand how the virus is transmitted. We can support people to access testing and treatment, as we know that getting treatment at the early stages of infection results in better health outcomes, and we can raise awareness that hepatitis positive people have the right to participate in a community free from stigma and discrimination.
For the first time we were excited to see King George Square and City Hall turn orange for the week, and lightpole banners hung in George Street and across Bedivere Overpass at Carindale.
The Queensland World Hepatitis Day campaign was a great success with plenty of activities to keep everyone entertained including: • Footprints Community Touch Football Tournament, St Joseph’s Nudgee College • Love your Liver event, Logan Central • Lover your Liver event, Redland Hospital
We thank those who supported World Hepatitis Day 2016. This success of this year’s campaign would not have been possible without your unwavering support. Whether you volunteered or attended an event, we thank you. Your commitment and generosity is what brings this campaign to life.
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Staff were very busy during the week mailing out over 174 resource packs throughout the state and 65 to prisons. These packs were very popular and supported numerous events across Queensland.
FOR MORE INFORMATION CONTACT HEPATITIS QUEENSLAND ON 1800 HEP ABC (1800 437 222) OR VISIT WWW.HEPQLD.ASN.AU
Don’t delay, get a blood test today.
If you’ve ever shared a needle or razor, we need to talk about hepatitis C. There are often no symptoms or warning signs. But left undetected, it can lead to cirrhosis, liver damage, cancer and even death. Thanks to the latest antiviral treatments available through your GP, you now have a 95% chance of being cured.
To get tested, talk to your GP or visit health.qld.gov.au/hepc
We need to talk about Hep C.
We’ve got the latest news from around the globe on all things hepatitis Authorised by the Queensland Government, Brisbane.
Queensland Government launches new hep C campaign
The “We need to talk about Hep C” campaign aims to encourage testing among high-risk community groups as well as highlighting that many people do not realise they may be at risk of contracting hep C. The campaign targets medical settings, and encompasses out-ofhome advertising in medical centres and pharmacies, as well as social media advertising. Find out more at: health.qld.gov.au/hepc
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Thousands of Australians now Hep C Free
The Commonwealth Government’s watershed commitment to eradicate Hepatitis C within a generation is paying off, with thousands of Australians now hep C Free as a result of a $1 billion investment. On the seventh World Hepatitis Day, Minister for Health and Aged Care, Hon Sussan Ley MP revealed about 20,000 Australians had already begun treatment to cure their debilitating hepatitis C since the Turnbull Government first
listed these breakthrough medicines on the Pharmaceutical Benefits Scheme in March 2016. About 5,000 of these Australians have already completed their course of treatment, and early-indications show them to be free of the blood-borne liver disease. Ms Ley said it was just another example of the Turnbull Government’ commitment to listing – and paying for – new breakthrough medicines without fear or favour, and in the face of large costs to taxpayers.
Hepatitis is 7th Leading Cause of Death Worldwide
The group of viruses that specifically cause acute liver inflammation, or hepatitis, are no lightweights when it comes to inflicting death and suffering, a new report published in The Lancet has found. And its authors believe the findings signal an urgent need to step up our efforts at prevention and treatment. Examining data from the Global Burden of Disease study, an expansive long-running attempt to quantify health trends worldwide, the researchers tracked how much illness and disability viral hepatitis caused from 1990 to 2013. The collection of viruses — Hepatitis A, B, C, D, and E — were ultimately responsible for 1.45 million deaths in 2013. Not only did this total represent an increase from the 890,000 deaths seen in 1990, it also made viral hepatitis the seventh leading cause of death that year, above other infectious diseases like HIV/AIDS, tuberculosis, and malaria. The rates of disability similarly took an upward climb, particularly for hepatitis C. In comparison, the world’s number one killer, heart disease, took down 8.1 million that same year. Source: http://www.medicaldaily.com/viral-hepatitis-leading-causedeath-infectious-hiv-tuberculosis-391356
Health Translations Directory
With 11,545 multilingual resources and counting, the Health Translations Directory provides health professionals and community members with reliable, accurate, and up to date health information in many different languages. While the service does not host or upload resources, it provides direct links to reliable translated health resources
produced in Australia. There are links to multilingual resources published by government departments, peak health bodies, hospitals, and community health and welfare organisations. Plus new resources are regularly being added. Resources are regularly reviewed ro ensure quality and accuracy. A green tick indicates a resource has been reviewed within the last 3 years. Access the directory at: healthtranslations.vic.gov.au.
Research shows hep C treatment safe and effective for drug users
Hep C patients being treated for opioid addiction achieved high rates of sustained virologic response after 12 weeks of therapy with elbasvir-grazoprevir, compared to those taking a placebo for 12 weeks before beginning the drug treatment. The patients in the elbasvir-grazoprevir group saw a reduced viral load, regardless of ongoing drug use. The results of a randomized, controlled trial are published in Annals of Internal Medicine. Up to 170 million people worldwide have hepatitis C virus (HCV) infection and injection drug use is a major risk factor. While the once-daily dosing, low side-effects profile, and shortened treatment duration of interferon-free directacting antivirals are ideal for injection drug users, most trials of these therapies for HCV have excluded persons with recent injection drug use. The CO-STAR (Hepatitis C Patients on Opioid Substitution Therapy Antiviral Response) trial sought to evaluate the efficacy and safety of elbasvir-grazoprevir for injection drug users. Researchers assigned 301 treatment-naive patients with chronic HCV genotype 1, 4, or 6 infection who were at least 80 percent adherent to visits for opioid-agonist therapy to immediate treatment with elbasvir-grazoprevir for 12 weeks, or deferred treatment with a placebo for 12 weeks, then open-label elbasvir-grazoprevir for 12 weeks. They found that 91.5 percent of the patients in the immediate treatment group achieved sustained virologic response, regardless of ongoing drug use. According to the authors, these results suggest that drug use should be removed as a barrier to interferon-free HCV therapy for patients being treated for opioid addiction. Source:
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HEPATITIS QUEENSLAND ACTIVITIES UPDATE
DEADLY GRANDMOTHERS OF THE SCENIC RIM
by Jodie Walton, Hepatitis Queensland
“This gathering was fantastic for our mental, emotional, physical, spiritual and cultural wellbeing. You got it right with having the Elders strong presence anchoring this business in country.”
In 2015 Hepatitis Queensland was approached by Auntie Ruby Rose (Elder of the Scenic Rim) to discuss concerns around hepatitis and drug use amongst young people. Matters raised included concerns that mainstream organisations often provide education only to young people affected by drug use and to youth workers. However, when organisations close, for many it is often Elders, particularly grandmothers in the community, that often support young people who are using drugs, or at risk, or living with hepatitis. It was also noted that it is culturally appropriate to be utilising the line of authority in the community: it was more appropriate to have Elders teaching young people, than young people teaching Elders about these issues. When Hepatitis Australia grants became available Hepatitis Queensland submitted an application for Elder support and education. The Deadly Grandmothers Project aimed to train A&TSI Elders from Beaudesert and surrounds in hepatitis B and C, drug use, mental health, and how to utilise support systems through the community and government, to better support young people at risk of or affected by hepatitis. We began with consultation and attending Elders gatherings. A wide range of social and health concerns were raised and from these consultations Hepatitis Queensland, in partnership with the Elders, developed a two-day program that included hepatitis B and C education, yarning circles, a mental health workshop, drug use education and personal stories. Fifty backpacks were provided to grandmothers between the two areas of Logan and the Scenic Rim. Backpacks included a DVD, hepatitis B and C brochures, comics, posters, Indigenous health service directory, pens, water bottles, Indigenous cook books, Indigenous mental health fact sheets and print outs of the conference presentations. In total 1500 resources were distributed with these
20 • The Hep Factor • www.hepqld.asn.au
backpacks. Grandmothers also raised concerns about racism within schools and disengagement from education. The grant was also utilised to create education packs for young people. These supplies are held at the Elders room which provides a culturally safe space for young people and Elders to engage in education.
are truly needed in the community to
Focusing on Indigenous processes and cultural safety was crucial for this project. Targeting Elders in the community has proven to be a successful and culturally appropriate way to deliver hepatitis information to the wider Indigenous community. Projects such as this could serve as a culturally appropriate model of service delivery that is holistic, effective and takes into account appropriate cultural processes.
now. We would like more contact please.
Positive feedback from the project included the following comments:
the entire program was professional
“The whole day was very friendly and clear to understand. The life story left a big impact. I understand a LOT more after attending and these meetings
important issue that needs to be talked
educate and assist the hep problem. Awareness is so important.” “Information sharing was done in a culturally respectful way, loved the music. We’ve (as Elders) never been so well supported in conference forums before. Sam and Jodie are our sisters It’s been healing and it’s only the
Heart connections and stories, I am grateful and thankful, I hope we do more of this.”
beginning.” “I liked talking with other cultural people about issues involved in community. Very constructive and positive ideas have eventuated from the forum today. These services must continue to make this world a better society.” “Very respectful to the grandmothers,
I am so grateful for everything, please come again.”
and highly informative. An extremely about. I am so proud the grandmothers made it happen.”
It has been a great two days of sharing and learning. More of these hepatitis days are needed. Being present with grandmothers and sharing stories!” The Hep Factor • www.hepqld.asn.au • 21
HEPATITIS QUEENSLAND ACTIVITIES UPDATE CORRECTIONS AND NON-CLINICAL WORKFORCE DEVELOPMENT PROJECT Staff in QLD Correctional Centres: Custodial Entry Officer Program Nine sessions have been delivered to 202 Correctional Academy students in Brisbane and Townsville with a further seven sessions to be delivered. These are two hour sessions covering hepatitis A, B & C, needle stick injuries, sharps disposal, blood spills, disclosure and discrimination, and safe work practices. Participants were asked how they will apply their learnings in the workplace. Responses included: “Knowing the differences of each hepatitis has given me more confidence within the job” “Better knowledge and understanding of BBV will enable me to do my job more effectively” “Being more informed to help me help prisoners with giving them information” “A better understanding and awareness, removes some of the fears” Participants were also asked what part of the education program they found the most useful. Responses included: “The class activity about the risks with specific situations” (in this exercise participants learnt about different risk levels) “Risk factors exercise- a lot of things I thought were high risk are actually low” “Chances of infection and treatment successes/progression”
IN DEVELOPMENT Telehealth updates for Correctional clinical staff in North and Far North Queensland.
ONGOING Hepatitis B and C training workshops for new nurses in the West Moreton Correctional Services.
Staff in QLD Correctional Centres: First Aid Instructors One session has been delivered to 30 participants with a further three sessions to be rolled out. Participants gained an overall better understanding of blood borne viruses and expressed a willingness to incorporate this into their current training. Feedback included: “As a First Aid Instructor I will be able to answer officer questions on hepatitis A, B, C, and HIV”.
Workshops for non-clinical staff in Alcohol and Drug Facilities and Rehabilitation facilities Two workshops have been delivered to 56 participants in Logan and Toowoomba, with a further eight workshops to be conducted in Brisbane, Townsville, Ipswich, Rockhampton, Gold Coast and Nambour. Hepatitis Queensland delivers this education as a subcontract for ASHM. Workshops dates: Non-clinical staff in Alcohol and Drug Facilities and Rehabilitation facilities • 11th October, Ipswich • 19th October, Rockhampton • 16th November, Southport, • February 2017, Townsville • Mar/Apr 2017, Nambour Phone 07 3846 0020 for more information.
22 • The Hep Factor • www.hepqld.asn.au
“I’m really looking forward to completing this course.” “I want to do this to educate myself so I can pass on updated info to the girls who need it.” Resources are also being developed to further promote the free prison phone directly to Hepatitis Queensland and increase treatment access to people in custody. A deck of cards will be printed with art from people in
PRISONER EDUCATION Hepatitis Queensland staff have been rolling out a new hepatitis, HIV and STI peer mentor program in correctional centres. Over August and September, we are training 40 peer mentors at Brisbane Women’s Correctional Centre. In October we will then travel to Capricornia Correctional Centre in Rockhampton to train a further 20 mentors. Peer mentors will be trained in hepatitis transmission, new treatments, testing, HIV, sexual health, drug use harm reduction and overdose.
The program is currently being monitored for effectiveness and reach, and mentors are provided with further support through the free Arunta prison phone line. Quotes from women currently doing the program include: “Thank you for helping us understand hepatitis, it’s good to be able to find out the correct facts about hep B and C.” “I liked learning something I knew nothing about…thank you for facilitating this program for us.” “I love learning about new things and building my knowledge skills.”
custody and will soon be available when people request an information pack from correctional centres. Hepatitis Queensland staff have also been busy attending several health expos in correctional centres and providing education to prisoners prior to release. These health expos provide staff with great opportunities to provide transmission, treatment and harm reduction information to people in custody, and help raise awareness of viral hepatitis in custodial settings.
Are you in custody or know someone who is?
Call Hepatitis Queensland on Arunta prison number 12 Get the latest hepatitis information
• how you get hep C or B • how you can look after yourself • about new treatments that cure hep C.
Get your FREE information pack mailed to you today. Free call Monday to Friday 9.00am to 5.00pm.
Free call: Arunta number 12 or 1800 437 222 (1800 HEP ABC)
The Hep Factor • www.hepqld.asn.au • 23
HEPATITIS QUEENSLAND ACTIVITIES UPDATE
HEPATITIS B COMMUNITY EDUCATION PROJECTS Hepatitis Queensland (HQ) has secured funding from Hepatitis Australia to develop and deliver seven hepatitis B community education projects (HBCEP) across Queensland. These projects have been designed to achieve the following outcomes: • Increasing the level of awareness of transmission risks, testing, treatment and monitoring of hepatitis B. • Reducing the barriers to hepatitis B treatment. • Increasing the proportion of people from priority populations living with hepatitis B being diagnosed. • Increasing the proportion of people from priority populations living with chronic hepatitis B who are receiving treatment.
“Community partnerships form an essential aspect of each of the hepatitis B projects. Both existing and new partnerships are being developed for these projects.”
If you are interesting in working with us, or want more information about the projects please contact Harriet at firstname.lastname@example.org or Lana on email@example.com or phone 07 3846 0020.
24 • The Hep Factor • www.hepqld.asn.au
Community partnerships form an essential aspect of each of the hepatitis B projects. Both existing and new partnerships are being developed for these projects.
Chinese and Vietnamese Education Project This project will see a range of targeted community education workshops for people at risk of, or living with hepatitis B using creative and innovative methods that are supported by the community. Outreach to community festivals and an awareness campaign will be used to promote and target these education activities. The awareness campaign will use outlets such as community radio, local newspapers, and social media.
TAFE Resource Project This project will develop a set of simple English hepatitis B education resources for students studying Basic Learning English courses at TAFE. These resources may include some translated information and will be used within education sessions and to further support those who have newly arrived in Australia.
Torres Strait Island Art Project and Bamaga Art Project These two projects will be based out of Cairns and will focus on Aboriginal and Torres Strait Islander communities from Torres Strait Islands and Bamaga. The projects will include a range of culturally appropriate workshops on hepatitis B along with an awareness campaign. Workshops will have elements of proven community-engagement activities such as art or music, or an activity that is identified by the community.
African Film Project This project aims to produce a number of culturally appropriate and targeted community education short films on hepatitis B. This project will be focused towards SubSaharan youth. An awareness campaign will be developed to promote the films and the launch. Media outlets such as radio, newspapers and social media will be used.
Sub-Saharan Africa Education Project
DIGITAL TRANSFORMATIONS You may have noticed some changes to the Hepatitis Queensland digital prescence over the past few months with an increased social media presence and updated HQ News email newsletter. With the addition of a Digital and Online Projects Services Officer, we are embarking on several new digital projects to embrace all that technology can offer to help benefit those affected by hepatitis.
Treatment Directory With the advent of new hepatitis C treatments its even more important that those seeking treatment know where to find it. With thanks to Hepatitis NSW for their inspiration, Hepatitis Queensland has created a simplified treatment directory displaying medical services, pharmacies and specialist centres that can assist patients in accessing the new treatments. A more comprehensive directory will be developed as part of the new website project, as mentioned below.
This project will see a range of targeted community education workshops for people at risk of, or living with
hepatitis B using creative and innovative methods that
We are in the process of redeveloping our website. The new site will feature a responsive layout so it can be easily accessed across devices including tablets and smartphones.
are supported by the community. Outreach to community festivals and an awareness campaign will be used to promote and target these education activities. The awareness campaign will use outlets such as community radio, local newspapers, and social media.
QPSB Speakers Project
In addition, the navigation of the website will be streamlined allowing for resources and information to be found quicker and easier. Look out for the new site in the coming months.
QPSB (QLD Positive Speakers Bureau) trains, mentors and supports Queenslanders living with HBV, HCV or HIV as professional speakers and motivators of change within the community. This project will recruit, train, deploy and support Queenslanders living with hepatitis B to become Positive Speakers. There will be an awareness campaign as well as a social media campaign to support these activities with education workshops as required.
SUBSCRIBE TO OUR NEWSLETTER VISIT WWW.HEPQLD.ASN.AU > NEWS > SUBSCRIBE
The Hep Factor â€˘ www.hepqld.asn.au â€˘ 25
Top left: Yvonne Drazic (Hepatitis Qld Board, CHAT) and Earl Rosas (Cairns Sexual Health Service) on Bumma Bippera Indigenous Radio. Right and bottom left: Jaye Hinchliffe (CHAT), Kathy Clark (CHAT) and Marianne Gosse from Cairns Sexual Health Service (as Hep C) in the Cairns Post.
Cairns Hepatitis Action Team: World Hepatitis Day media marathon Hi everyone! We hope you all had an awesome World Hepatitis Day full of good news and awareness. In previous years the Cairns Hepatitis Action Team (CHAT) has run art and music events, but this year we decided to reach as many people as possible doing what we do best – telling our personal stories! We scheduled a marathon of media events for the week. Our key messages for hepatitis B and hepatitis C were different, so we looked hard to find media that suited each audience. For hepatitis C we really wanted to appeal to the baby boomer generation, and to those people who might be frightened about treatment based on the old treatments.
For hepatitis B we wanted to raise awareness around monitoring and treatment, in the context of stigma, shame, and family and community conversations. We were very lucky to secure a spot on National Indigenous Radio on the Talk Black show, and also on ABC Far North. All up we did eight radio interviews and one newspaper interview. Love to all From CHAT, the Cairns Hepatitis Action Team
26 • The Hep Factor • www.hepqld.asn.au
Cairns Sexual Health: LiverLife campaign Between June 27 and 30 the Alcohol, Tobacco and Other
this important study with specialist doctors, laboratory
Drugs Service (ATODS) and Cairns Sexual Health Service
technicians and PhD students all travelling from UNSW to
(CSHS) participated in a national
work with local Cairns and Hinterland
research study called Liver Life with
the Kirby Institute at the University of New South Wales.
On June 27 Professor Greg Dore, Head of the Viral Hepatitis Clinical Research
The research was undertaken at four
Program at The Kirby Institute and
Healthy Liver health promotion days
held over the week with a total of 61
Physician at St Vincent’s Hospital,
participants. Participants had a history
provided an educational event for 40
of injecting drug use and were offered
staff who work in drug and alcohol
liver scanning and blood testing as well as
settings, along with Cairns Hepatitis Action Team
education, STI testing and referral for follow up
member Jaye speaking about her experience of
care or specialist review.
hepatitis C treatment and Cairns and Hinterland HHS Senior Medical Officer Dr Greg Spice
Two sites participated in the health promotion days – ATODS at Aplin Street and Youthlink Needle and Syringe program (NSP) at Severin Street. The study found that 29 per cent of clients recruited at ATODS were living with chronic hepatitis C and that 23 per cent of clients recruited at the community-based NSP at Youthlink were living with chronic hepatitis C.
free by 2020
presenting local case studies. The week of education and research fitted well with the ‘Cairns Hep C Free by 2020’ campaign and the ongoing work by the peer-based Cairns Hepatitis Action Team (CHAT) who have driven much of the community advocacy on this issue.
The ‘Cairns Hep C Free by 2020’ campaign featured at the All clients diagnosed with Hep C are being offered treatment
recent Primary Health Network MyPHN conference in Cairns
which can cure the chronic viral infection within 12 to 24
on July 9-10 with a workshop presentation and information
handouts for primary care providers.
It was exciting that Cairns was chosen as a site for
From Carla Gorton and Rhondda Lewis at Cairns Sexual Health
The Hep Factor • www.hepqld.asn.au • 27
THE NEW HEP C TREATMENTS FOR ADULTS WHO HAVE HEP C GENOTYPES 1, 2 OR 3 AND A MEDICARE CARD
SOFOSBUVIR & LEDIPASVIR
SOFOSBUVIR & RIBAVIRIN
SOFOSBUVIR & DACLATASVIR
(SOVALDI® & IBAVYR®)
(SOVALDI® & DAKLINZA®)
(PARITAPREVIR, RITONAVIR, OMBITASVIR & DASABUVIR)
8, 12 OR 24
12 OR 24
12 OR 24
OF PEOPLE CURED
OF PEOPLE CURED
OF PEOPLE CURED
sometimes with Ribavirin
OF PEOPLE CURED
MOST PEOPLE HAVE NO OR VERY MILD SIDE-EFFECTS * FOR MOST PEOPLE, TREATMENT IS USUALLY TAKEN FOR 12 WEEKS PEOPLE WITH GENOTYPES 4 - 6 ARE TREATED WITH SOFOSBUVIR TAKEN WITH PEGYLATED INTERFERON AND RIBAVIRIN TREATMENT. THEY HAVE MORE THAN A 90% CHANCE OF CURE.
GPs CAN NOW TREAT HEPATITIS C. TALK TO YOUR DOCTOR, NURSE OR CLINIC ABOUT GETTING READY FOR TREATMENT WANT TO KNOW MORE?
Call our Infoline 1800 437 222 (1800 HEP ABC) or visit www.hepqld.asn.au This resource originally developed by Hepatitis NSW, 2016.
Published on Sep 12, 2016
The Hep Factor is a bi-annual magazine published by Hepatitis Queensland. Featuring news and personal stories about viral hepatitis, the mag...