HEP REVIEW
NEW HEPAT ITIS C TREAT MENTS AVAILA B 1 st MAR LE CH!
MARCH -JUNE 2016 Edition #90
PUT TO THE TEST NEW First hand accounts MEDICATION of treatment on FAQ new medications Answers to your frequently PEOPLE WHO asked INJECT DRUGS questions Treatment works & shouldn’t be discouraged
ALSO INSIDE...
TIMELINE TO SUCCESS TEST RESULTS MEETS ART IT’S BETTER TO KNOW HEALTHY RECIPES & MORE!
© 2016 Hep Review ISSN 1440 – 7884
HEP REVIEW
Published every four months by Hepatitis NSW (HNSW) - an independent community-based, non-profit membership organisation and health promotion charity. We are primarily funded by the NSW Ministry of Health. Level 4, 414 Elizabeth St, Surry Hills NSW 2010
Editor/Design/Production Grace Crowley
Hep Review is mailed free to HNSW members – membership is free for people living with viral hepatitis in NSW.
Editorial Committee Tim Baxter Paul Harvey Alastair Lawrie Stuart Loveday David Pieper Lia Purnomo Yvonne Samuel Rhea Shortus Denise Voros Contribut0rs Helen Blacklaws David Pieper Kurt Brereton Ngaio Chandler Lila Pesa Hep Review advisors Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Rhoslyn Humphreys, Prof Geoff McCaughan, Dr Cathy Pell, Dr Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak, Catherine Stevens Proofreading/Sub-Editing Adrian Rigg Cindy Tucker Contact phone 02 9332 1853 email hepreview@hep.org.au post PO Box 432, Darlinghurst NSW 1300 office Level 4, 414 Elizabeth St, Surry Hills, Sydney Cover Images Exposition by RAF expositionbyraf.com
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We accept contribution of articles about health and personal aspects of hep C or hep B. Contributions to Hep Review are subject to editing for consistency and accuracy. Contributors should supply their contact details and indicate whether they want their name published. We’re happy for people to reprint information from this magazine, provided Hep Review and authors are acknowledged and that the edition number and date are clearly visible. This permission does not apply to images, graphics or cartoons. Reprint permission: hepreview@hep.org.au Although Hep Review takes great care to ensure the accuracy of all the information it presents, Hep Review staff and volunteers, HNSW, or the organisations and people who supply us with information cannot be held responsible for any damages, direct or consequential, that arise from use of the material or due to errors contained herein. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Information, resources and advertising in Hep Review do not constitute endorsement or recommendation of any medical treatment or product. HNSW recommends that all treatments or products be discussed thoroughly and openly with a qualified and fully HBV/HCV-informed medical practitioner. A model, photographer or author’s hep C or hep B status should not be assumed based on their appearance in Hep Review, association with HNSW or contributions to this magazine.
Hepatitis NSW would like to acknowledge and show respect for the Gadigal people as the traditional custodians of the land on which Hep Review is published. We’d also like to extend that acknowledgement and respect to all Aboriginal nations in NSW and across Australia.
MARCH 2016 Edition #90
Contents
HEP REVIEW
Features 6
14
22
New Hep C Medication FAQ
Put To The Test!
The recent announcement on new treatments has led to a range of questions - here’s a list of answers to help.
We talk with three people treated with the new direct acting anti-viral medications for a first hand account of treatment.
Why We SHould Treat People Who Inject Drugs
Regulars Letters..........................................3 Editorial........................................4 Local news..................................17 World news................................ 18 Healthy Recipes........................ 46 Going Viral: Boosting Skills & confidence.................................50 Horrorscope.............................. 52 Crossword & Comics.................53 Treatment clinic listings............54 Let’s Talk About: Positive psychology..................................58 Your feeback wanted................ 61
Mains Timeline to success.....................9 What the Minister said.............. 13 CEASE - HIV & Hep C co-infection................................26 Hep C research in NSW prisons scales up....................................29 Two paths of chronic hepatitis B .................................30 Test Results Meets Art.............. 31 Obituary: Yvonne Cossart.........36 It’s Better To Know................... 37 The health of Australia’s Prisoners 2015............................38
Treatment works and shouldn’t be discouraged.
My Story Fungi’s Story While she was living in Zimbabwe, Fungi was exposed to the hepatitis C virus during a medical procedure. It took her many years to realise she was living with the virus and by that time she was constantly exhausted and struggling with serious episodes of “brain fog”. Fungi credits treatment with giving her back her life - read more about her journey! ...................................................20
Our cover features Annie, Daniel, Sergio, Brett, David, Jacklynne, Esther, David, Annette and others who all volunteered to be part of Hepatitis NSW’s Photocall Project. Thank you! hep.org.au | Hep Review 3
letters Dear Hep Review, I have been a member of Hepatitis NSW for a number of years and am currently an inmate in a NSW prison. Over the years I have read your magazine with interest. A common theme raised in articles, and again by Heather McCormack in issue #89 (Aboriginal People are Disproportionately Affected by Hepatitis. We Know Why, page 16), is the introduction of a needle syringe program (NSP) within the prison system. There are a number of issues raised. While I agree that a NSP would reduce transmission of hep C between drug users it would pose an unacceptable risk to non-drug users via needle stick while conducting searches. Officers conducting a search who find drugs or drug paraphernalia are obliged to seize these items as they are illegal in Australia. Therefore inmates are forced to conceal the needles in mattresses, clothes, book spines, etc. This leads to needle stick potential. As an inmate I do not want to contract hep C because I inherit a mattress with a concealed needle. The only way Australia will negate hep C transmission within the prison system is by legalising or at least decriminalising narcotics. This would address McCormack’s other point, that of indigenous over representation within the prison system. Currently NSW prisons are flooded with illegal drugs and drug use is on the rise due to corrective services doubling up cells to house more inmates. In July 2015, CSNSW had 10,800 beds and 11,000 inmates. As of October there are 12,000 inmates and CSNSW informed the Official Visitor Conference recently they are projecting 18,000 inmates by 2017. The inmate response to this overcrowding is to take drugs to escape the anxiety, stress and violence induced by cramming more than 80 inmates into units designed to house only 58, and into cells the size of suburban bathrooms for up to 18 hours a day (assuming a good day, for even longer on a bad day). I do not have the answers. I do know that if I ran the country/state I would decriminalise narcotics and push for greater education of the risks of hep C and other transmissible diseases. Yours, Robert Thank you for your letter, Robert. We understand your concerns regarding concealed syringes; however that issue, along with a number of other related matters, would need to be addressed in the development of any effective and safe needle syringe program within the prison system. Ideally any fit being used should only be used once and then disposed of, thereby greatly reducing the risk to other people in custody and prison staff of accidental needle stick injuries and potential exposure to hepatitis C and/or other blood-borne viruses. Experiences in overseas jurisdictions with NSPs does not indicate there is a greater risk of needlestick injuries. However, as you very effectively point out, the penal system and the way the state deals with narcotics also needs a significant rethink and until that happens there is unlikely to be a change in the status quo. Dear Hep Review, I really enjoyed the Hep Artwork from Long Bay inmates. I was wondering if any more art from inside was being considered? Cheers Darren Thanks Darren, it was indeed some awesome art from the guys at Long Bay! We hope to have more in future issues.
4 Hep Review #90 | Nov-Feb 2016
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editorial
GRACE CROWLEY
H
epatitis NSW has been delighted by the announcement that the new anti-viral treatments for hep C are to be subsidised by the Australian Government through listing on the Pharmaceutical Benefits Scheme (PBS). This has been a long time coming but the fact that, from March 1, all people in Australia with hep C will be able to access these life-saving medicines is a ground-breaking moment. Given the 12-week course duration, the ease of taking the pills, mostly minimal side effects and, above all, an exceptionally high cure rate of more than 95% plus, the new sofosbuvir-based treatments have the capacity to stop the hep C epidemic in Australia. Hepatitis NSW is urging all people in NSW and Australia who are living with hep C to talk with their doctor about the new treatments. For people with any history of the risk behaviours, we urge you to see your doctor for a simple blood test, so you can take action and seek treatment too.
“...from March 1, all people in Australia with hepatitis C will be able to access these life-saving medicines...”
We thank and congratulate Health Minister Sussan Ley and the Turnbull Government for giving people with hepatitis C equal treatment access. In this issue of Hep Review we have a number of articles concerning the new medication treatments - a FAQ that collects information on everything we know so far from the Government’s announcement, a look at how the new treatments have worked so far, and more. As always, our website (hep.org.au) and Hepatitis Helpline (1800 803 990) will have the very latest information.
"BE YOURSELF...
NO ONE
CAN SAY
YOU ARE DOING IT
WRONG." SNOOPY
New treatments aside, there are also plenty of other good reads in this edition. We speak with Kurt Brereton who has used his evocative artwork to document his journey with hepatitis C. An article by Helen Blacklaws discusses the discrimination often faced by people who inject drugs seeking treatment for hepatitis C, and we also take a look at the scale and human impact of the hepatitis epidemic continuing to grow in Mongolia. Thanks to the Australian Institute of Health and Welfare we take an in-depth look at the level of hepatitis B and C infection within Australia’s prisons. There are plenty of yummy healthy recipies, our hepatitis treatment clinic listings, crossword, comic, horrorscope and heaps more news, info and entertainment within! Cheers Grace Editor
hep.org.au | Hep Review 5
New med O
n 20 December 2015 Health Minister Sussan Ley made the very welcome announcement that funding had been allocated for the Pharmaceutical Benefits Scheme (PBS) listing of new hepatitis C treatments from 1 March 2016. The recent announcement has also led to a range of questions from people living with hep C and their families and friends, including, what will be available, when and whether there are any exclusions. These new treatments mark a major turning point in the fight to cure hep C for as many people as possible. The old interferon-based treatments, while offering a good chance of cure, had significant and very debilitating side effects for many people with hep C who took them. For this and other reasons, treatment uptake was very low. These new, Direct Acting Antiviral (DAA), all-oral, interferon-free hep C treatments will enable us to take a major leap forward in curing hep C in many more people, more easily, and more quickly. Hepatitis Australia has prepared a set of frequently asked questions (FAQs) to help provide an accurate picture for the community. Our thanks go to Hepatitis Australia for this information, which we have updated, including for the NSW setting.
What are the names of the new medicines and who are they for? The medicines being made available on the PBS from 1 March 2016 are:
Image by Arturo Castellanos | flic.kr/p/9SMday
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n Harvoni (sofosbuvir/ledipasvir) – genotype 1 n Sovaldi and Daklinza (sofosbuvir and daclatasvir) – genotype 1 and 3 n Sovaldi and Ibavyr (sofosbuvir and ribavirin) – genotype 2 and 3 n People with hep C genotypes 4 or 6 (less common in Australia) are still only being offered interferonbased combination treatment.
hep C dication FAQ How long will these new DAA treatments last? n Harvoni • 8 weeks for people with no prior treatment, no cirrhosis and viral load less than 6 million IU/mL • 12 weeks for people with no prior treatment, no cirrhosis and viral load more than 6 million IU/mL • 12 weeks for people with no prior treatment and cirrhosis • 24 weeks for people with prior treatment and cirrhosis n Sovaldi and Daklinza • 12 weeks (although likely longer for people with cirrhosis). n Sovaldi and Ibavyr • 12 weeks for people with genotype 2 • 16 or 24 weeks for people with genotype 3
Are the new medicines better than the older ones? There are a number of benefits. The new medicines: n are far more effective resulting in a cure for 90%-95% of people who take the treatment as prescribed n are taken as tablets. As a result there is no longer a need for interferon injections for the vast majority of people with hep C in Australia n have very few side effects, and these are mostly mild n can be taken daily for 12 weeks for most people, and even as little as 8 weeks for some people n do not require the use of pegylated interferon. They are interferon-free. Note that people with hep C genotypes 4 or 6 (less common in Australia) are still only offered interferon-based combination treatment.
Will other medicines be listed too? There are other medicines currently being considered for PBS listing. Updates will be provided as details are finalised.
When will the new medicines be available to Australians? The new medicines will available on the PBS from the 1 March 2016.
Are they available from GPs? The government has said that GPs will be able to prescribe these medicines in (or following) consultation with a specialist. Specialists will also be able to prescribe the new medicines.
Do you have to be very sick to access the new medicines? No. Everyone who has been diagnosed with chronic hepatitis C infection will be eligible to receive the new medicines regardless of their stage of disease. However hepatitis treatment clinics are likely to priortise treatment for those people with more advanced liver disease. That is why treatment prescription and management by GPs is so important.
Will people who currently inject drugs be able to access the new medicines? Yes. There will be no restrictions applied for people who inject drugs as they are a priority population for hepatitis C treatment.
Will access to the new medicines be restricted or limited in any way? No. The new medicines will be available through the PBS to all adults who have chronic hepatitis C and have a Medicare card – regardless of their stage of liver disease. The particular combination of medicines prescribed will depend on a number of individual clinical factors. Interferon-free treatment options will be available for all major genotypes in Australia.
Continued next page... hep.org.au | Hep Review 7
Will people in prison be able to access the new medicines? Yes. It is usually a state and territory responsibility to fund the health care of people in custodial settings. However, the Australian Government has agreed to fund the treatment for prisoners as they are a priority population for hepatitis C.
Do the medicines really cost the government around $100,000 per treatment? No. The actual price to be paid is not public knowledge as it is a matter of commercial negotiation between the government and the pharmaceutical companies. Often the ‘list price’ (e.g. $100,000) is quoted in reports but this does not acknowledge any negotiated discounts being applied. Once applied, the true cost to government is substantially less than the ‘list price’.
Is it true that the hep C PBS listing is under threat if the government’s proposed budget cuts to bulk-billing of blood tests and x-rays are not approved by the Senate? No. Hepatitis Australia has received advice from the Minister’s office that the government funding for the PBS listing for the new hepatitis C medicines on 1 March 2016 has been approved and is committed. This means the PBS listing is not dependent on legislation being passed for proposed health reforms.
8 Hep Review #90 | Nov-Feb 2016
How much will the medicines cost me? For the broader Australian population, the all-oral, DAA hep C treatments will be funded under the general (Section 85) schedule of the PBS, rather than under the S100 Highly Specialised Drugs (HSD) schedule, as is the case for the interferon-based treatments. Once the PBS listing takes effect on 1 March 2016, you will be charged only the usual monthly co-payment price you pay for a prescription. From 1 January 2016 this is $38.30 per month for general patients and $6.20 per month for concessional patients. However, in NSW we are awaiting confirmation that the NSW Ministry of Health will pay these co-payment costs, making access to treatments for people with hep C completely free, in the same way the NSW Government committed to absorb these costs when the treatments were listed as S100 schedule medications.
Where can I get further information? n You can talk to your treatment nurse or doctor at your liver clinic or your GP. n NSW Hepatitis Infoline: 1800 803 990 Monday to Friday 9am to 5pm (closed Thursday mornings)
The information in this article is subject to change as new information emerges - please refer to our website for updates: hep.org.au
Timeline to
SUCCESS
O
n 1 March 2016, people in Australia living with hepatitis C will have equal access for the first time to all-oral, interferon-free, directacting antiviral treatments which lead to cure in more than 90% of cases. In an historic moment 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 representative organisations advocated strongly all the way for approval and listing of these longawaited treatments. Hepatitis NSW led the push for Equal Treatment Access: so that all people in Australia can receive the new treatments, without restriction based on treatment history or liver disease stage. Hepatitis NSW sincerely thanks, in particular, our C me Community Advocates 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, appeared in our ETA video and gave TV, radio and newspaper interviews. Hepatitis NSW 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.
December 2013 Sofosbuvir approved by FDA 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.
2013
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 costeffectiveness and the high and likely underestimated impact on the budget. Simeprevir is, however, recommended.
2014
May 2014 Hepatitis NSW calls for public submissions to PBAC: Round 1 Hepatitis NSW 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.
August 2014 Equal Treatment Access 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.
hep.org.au | Hep Review 9
22 January 2015 Commonwealth Parliament holds inquiry into hep C
October 2014 Why is Australia so far behind? 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 are we so far behind?
26 November 2014 Local & International support for ETA petition 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 Access.
12 December 2014 New treatments could eradicate hepatitis C 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 Hepatitis in London.
2015
2014 13 November 2014 ETA petition launched Hepatitis NSW Campaigns Coordinator, David Pieper, launches the online Equal Treatment Access petition. Hepatitis Australia and the other State and Territory Hepatitis organisations jump on board and share it with people living with hepatitis C across Australia. Partners from across the Blood Borne Virus Sector, including NUAA, also lend a hand.
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 NSW helps community members to make submissions, and on 22 January, we support half a dozen people tell their own experiences of living with hepatitis C to a public hearing in Sydney.
1 December 2014 Small Step forward as simeprevir is listed on PBS 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.
10 Hep Review #90 | Nov-Feb 2016
8 January 2015 New Health Minister
28 January 2015 PBAC to reconsider Sussan Ley, MP for Farrer, sofosbuvir, and consider other new treatments: is appointed as Federal Health Minister replacing Round 2 Peter Dutton. The ETA petition has reached over 3,600 signatures.
Three new hep C treatments (asunaprevir, daclatasvir, ledipasvir + sofosbuvir and sofosbuvir) are on the agenda for the March meeting of the PBAC, as well as sofosbuvir (again). Hepatitis NSW encourages community members to take this first opportunity since the rejection of sofosbuvir last July let the PBAC know that all Australians living with hep C deserve Equal Treatment Access.
10 March 2015 April 2015 ongoing PBAC meets to consider Limited access through hep C drugs trials, and compassionate access schemes 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. Hepatitis NSW CEO Stuart Loveday, and community member and C me advocate Bill Lehane (above), have the rare opportunity to directly address Committee members, and explain just why these drugs are so important to more than 80,000 people living with hepatitis C in NSW alone.
With the new drugs recommended by the PBAC but with an 20 May 2015 uncertain wait until PBS listing, Health Minister shows the main options for people trying first sign of support to access them within Australia Health Minister Sussan is through clinical trials, although Ley tells her local paper these are now thin on the ground, that she “will support or, for people with advanced liver recommendations for disease, through compassionate several new hepatitis C access schemes. All hep C treatments to be listed on pharmaceutical companies the Pharmaceutical Benefits seeking PBS listing offered Scheme”. Ms Ley told The these programs, although the Border Mail “she would numbers were small (especially begin working toward their when compared to the more inclusion on the PBS after than 230,000 people waiting for the July meeting”. treatment access overall).
28 July 2015 World Hepatitis Day (WHD) Hepatitis NSW, Hepatitis Australia and other state and territory hepatitis organisations say that it’s Time For Action to stop 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. Hepatitis NSW’s 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 Positive recommendations from PBAC 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.
15 May 2015 Greg Jefferys blogs about personal importation of hep C meds 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 put pressure on the big drug companies to lower their prices.
1 June 2015 More new treatments on the PBAC agenda: Round 3
22 August 2015 FixHepC opens for business
Another new treatment called Viekira Pak is on the agenda for the July meeting of the PBAC. Hepatitis NSW 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 coinfected with HIV or hep B.
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.
hep.org.au | Hep Review 11
24 August 2015 PBAC Recommends Viekira Pak More good news! Another interferon-free 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 interferonfree hepatitis C treatment option to be made available on the PBS. Hepatitis NSW calls for Government to act as this situation is unacceptable, and it is unconscionable.
October 2015 Equal Treatment Access Petition delivered 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.
20 December 2015 Turnbull government to spend $1 billion on hepatitis C ‘miracle cures’ for all The best news of all! Sussan Ley announces $1billion over 5 years in funding for new treatments for hepatitis C – sofosbuvir, sofosbuvir+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.
2015 1 October 2015 Time for Action – Time for new cures campaign Hepatitis Australia, Hepatitis NSW, 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.
2016 October - November 2015 Community joins Time for New Cures call In the absence of action from Federal Government, Hepatitis NSW 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.
1 March 2016 PBS Listing 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 will change forever on 1 March 2016, but that doesn’t mean it will stand still. Hepatitis NSW will continue to advocate for Viekira Pak to be listed on the PBS, as an additional option depending of different genotypes or coinfection with HIV. We hope to see more hepatitis C direct acting antiviral 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 NSW will push for these drugs to be accessible to all, so as many people as possible can be cured of hepatitis C.
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What The Minister said HIGHLIGHTS FROM FEDERAL HEALTH MINISTER SUSSAN LEY’S MEDIA RELEASE 22 DECEMBER
Turnbull Government to invest more-than $1 billion to give all Australians with hepatitis C access to breakthrough cures. Australia first in the world to publicly subsidise these cures – currently costing patients up to $100,000 – for the nation’s entire population of people with hep C, no matter what their condition or how they contracted it. There is hope of not only halting the spread of the hep C virus, but eradicating it altogether in time. More-than $1 billion investment in hep C over the next five years. Listing of multiple drug combinations to ensure cures for all types of hep C are available to the entire patient population through the Pharmaceutical Benefits Scheme (PBS) from March 1, 2016. PBS listed medications: Sofosbuvir with ledipasvir (Harvoni); Sofosbuvir (Sovaldi); Daclatasvir (Daklinza); Ribavirin (Ibavyr). Important to tackle the disease head on, providing medicines to all Australians, particularly vulnerable populations where rates of infection are high. Cures to be administered in line with the Australian Government’s 4th National Hepatitis C Strategy. Medicines on PBS will see hep C patients pay just the normal PBS co-payment for these medicines: $6.20 concessional $38.30 general PBS funding had been fully accounted for as part of December’s Mid -Year Economic and Fiscal Outlook (MYEFO), but was not announced at the time as confidential pricing negotiations with medicine suppliers were still being finalised. All PBS listings are subject to final arrangements being formalised with the suppliers of the medicines. hep.org.au | Hep Review 13
PUT TO THE TEST! Comparing different interferon-free treatments
D
uring 2015 several new treatments were recommended by the Pharmaceutical Benefits Advisory Committee (PBAC), and in December it was announced that all but Viekera Pak will be funded by the Pharmaceutical Benefits Scheme (PBS) from 1 March this year. Some of these medicines have been available in the US for over two years, where thousands of people have already been cured. Until now the only Australians who could access them were those on clinical trials, those who had paid for and imported generic forms privately, and some people who qualified for compassionate access.
Image by Grant | flic.kr/p/7sFnkS [modified]
14 Hep Review #90 | Nov-Feb 2016
“ The word on the new medications is very positive, with cure rates over 90 per cent, 8-24 weeks (majority 12 week) courses and minimal side effects being reported. But the limited community access to date has made it difficult to gauge the real-world performance of these drugs. Fortunately Hepatitis NSW knows a few people who have been treated with the new drugs, who can give a first-hand account of what it was like for them. Phillipa finished her 12 week course of Harvoni (a combination of ledipasvir and sofosbuvir) in June, Steve finished a course of sofosbuvir and daclatasvir in September and Bill has just finished a 24 week course of Viekira Pak plus ribavirin.
WHICH TREATMENT FOR WHICH GENOTYPE?
People in the US with genotype 1 have been taking sofosbuvir (Sovaldi) and simeprevir (Olysio) plus ribavirin, Harvoni or Viekira Pak. Genotype 1a is the most common in Australia but also has the greatest number of treatment options. Bill had genotype 1a and has been taking Viekira Pak and ribavirin. Phillipa took Harvoni for 12 weeks to treat Genotype 1 and Steve took sofosbuvir and daclatasvir for 24 weeks to treat genotype 1a.
SIDE EFFECTS
Side effects were pretty much negligible according to Steve. When pressed, he mentioned a bit of nausea. He had some difficulty sleeping (insomnia) although he suffered tiredness at the same time. Phillipa also experienced fatigue on Harvoni although she says it was not significant. Documented side effects of Harvoni include: fatigue, headache, insomnia and nausea. They tend to be more common when the combination is used with ribavirin. Bill says he experienced some “brain fog” while taking Viekira Pak. He also mentioned a strange thumping pain in his lower back, insomnia and strange dreams. In the prescribing information fatigue, nausea, itchy skin, insomnia and weakness are the most common side effects.
Hepatitis NSW knows a few people who have been treated with the new drugs, who can give a firsthand account of what it was like. ”
TREATMENT DURATION
Standard treatment duration is 12 weeks for all four treatment combinations recommended by PBAC. People with cirrhosis or severe liver damage may be prescribed 24 weeks of treatment. Bill did 24 weeks of treatment with Viekira Pak because he has cirrhosis. Steve also did 24 weeks because he has severe liver disease. For some people, high cure rates can be achieved in just eight weeks with Harvoni which will be available in Australia from 1 March 2016.
PILL BURDEN
The ideal treatment is one pill once per day, although some of our participants were on regimens with multiple pills. Steve described the plain white tablet and houseshaped green tablet in his treatment as being reminiscent of components of the board game Monopoly. Viekira Pak’s fixed-dose combination of paritaprevir, ritonavir and ombitasvir in one tablet, plus dasabuvir in another, with or without ribavirin is probably the most complex dosing regimen. Bill says he didn’t miss a dose but said he had three tabs left over at the end of treatment.
MANAGING SIDE EFFECTS
None of our participants required anything more than over-the-counter remedies (for example, Paracetamol) to counter the side effects of their treatment.
Continued next page...
hep.org.au | Hep Review 15
BILL
STEVE
PHILLIPA
Medication: Viekira Pak & ribavirin Genotype: 1a Course: 24 weeks Complications: cirrhosis Side effects: “Brain fog”, lower back pain, insomnia, “strange dreams”
Medication: Sofosbuvir & daclatasvir Genotype: 1a Course: 24 weeks Complications: Severe liver disease Side effects: Some nausea, insomnia and tiredness
Medication: Harvoni Genotype: 1 Course: 12 weeks Side effects: Some fatigue “not significant”
For nausea resulting from hep C regimens, patients are usually advised to take the medication with food. Phillipa said taking meds on an empty stomach made her a little nauseous, but it generally wasn’t severe. Bill found it helpful to keep himself busy to manage the side effects of treatment. He kept a record of his treatment on a chart and counted down the days. He would also take his dog Jeda for walks or cook himself a meal if things bothered him. Similarly, Steve made the decision not to push himself beyond what he could easily manage and to eat small regular meals, rather than try to get through a bigger meal. Anaemia is the primary adverse effect of ribavirin, which continues to be included in some treatment combinations, such as Viekira Pak, taken by Bill. Shorter treatment lengths mean that the effects on the blood can usually be managed by adjusting the dose. Bill was given the option of reducing his ribavirin dose, but chose not to. Ribavirin has been associated with side effects in the past but thankfully there are now combinations available which do not include it.
16 Hep Review #90 | Nov-Feb 2016
MAKING THE BEST CHOICE
Overall the consensus between our three patients was that there was “nothing much” to report in the way of side effects from any of the new treatments. Success rates are also comparable between them. But the psychological effects of getting treatment and becoming cured are profound. In Steve’s words “I can’t believe how different I feel”. Reports of euphoria, increased energy, and of feeling well may be potentially life-altering experiences!
The information in this article is purely anecdotal and should not be relied upon for clinical purposes. Your clinician is the best person to advise on the best choice of treatment for you. Australian treatment guidelines are currently being developed and will be available on the Hepatitis NSW website.
hep.org.au
LOCAL NEWS NEWS | NSW | ACT | NT |AUSTRALIA
exchange could not be introduced without the support of guards.
John Didlick, Hepatitis ACT
Public Health Association of Australia Chief Executive Officer Michael Moore said the continued emergence of hepatitis C cases in the prison could only amount to a “failure of duty of care” by the ACT government.
AT LEAST SIX ACT PRISONERS INFECTED WITH HEP C AS SLOW PROGRESS ON NEEDLE EXCHANGE CONTINUES
Abridged from: canberratimes.com.au Read in full: bit.ly/1Zxs0a3
ACT health authorities received 30 notifications for hepatitis C infections involving prisoners at the Alexander Maconochie Centre from January to September 2015, figures released to Fairfax Media show.
VIROLOGY CONFERENCE FOCUSES ON ADVANCES IN HEPATITIS AND HIV RESEARCH
Six were confirmed as “in-custody transmissions”. Authorities were unable to determine whether a further 12 hepatitis C cases were caused by transmission behind bars or in the community. Hepatitis ACT executive officer John Didlick said the reality at the AMC was an unregulated needle exchange, which was “the very worst possible” model. News of the new infections came as guards, their union, and the government continued to hammer out a needle exchange model that would win the support of custodial officers at the Alexander Maconochie Centre. The proposal for a prison-based needle and syringe program was announced in 2012 by then Chief Minister Katy Gallagher, who said she hoped to have it operating in 2013.
The Australasian Virology Society held its meeting in the Hunter during December, along with another conference specific to hepatitis and HIV virology. Experts travelled from the United States, New Zealand, Singapore and Malaysia to attend the summit. Conference convenor, Professor Peter White said it is an important opportunity for those in the field. "We're looking for cures, we're looking for vaccines and it's important to know what other groups around the country are doing and around the region.” Groundbreaking developments on hepatitis C treatment dominated discussions at the conference. Professor White said there have been huge steps forward in hepatitis C research in recent years.
"We've got a new wave of drugs coming forward which will cure 95% of people in 12 weeks and it's a huge breakthrough, it's not like HIV where it's only a suppression of the virus."
Abridged from: abc.net.au Read in full: ab.co/1U8bNa0
STRATEGY HELPS PREVENT HIV AND HEP C ACROSS AUSTRALIA About 500,000 needles and syringes have been distributed to Northern Territory people who inject drugs in the past year. The NT’s AIDS and Hepatitis Council (NTAHC) also revealed there was a reported 7000 “episodes of service” to clients to the Darwin, Palmerston and Alice Springs exchange in the same period. NTAHC executive director Kim Gates told the NT News the Territory’s successful needle and syringe program (NSP), which was established in the 1980s as a harm-reduction strategy was about reducing harm and particularly the reduction in blood-borne viruses in the community. Ms Gates said the national program came in response to the HIV and viral hepatitis epidemic, reaching out to intravenous drug users to halt the spread.
But prison guards immediately voiced concerns, fearing the program could not be managed in a way that guaranteed their safety.
In the decade to 2008 it was estimated NSPs across Australia prevented 32,000 cases of HIV and almost 100,000 cases of hepatitis C, while saving more than $1 billion in healthcare costs.
Under their union’s enterprise agreement, a prison-based needle
Abridged from: ntnews.com.au Read in full: bit.ly/1RwMjFh
hep.org.au | Hep Review 17
WORLD NEWS NEWS | INTERNATIONAL
TPP COULD LIMIT AFFORDABLE DRUGS: WHO A trade pact between 12 Pacific rim countries could limit the availability of affordable medicines, the head of the World Health Organisation (WHO) has warned.
MOROCCO “TO BE WITHOUT HEPATITIS C BY 2020”
SCIENTISTS HOMING IN ON NEW HEPATITIS C VACCINE
The Moroccan Minister of Health, Houceine El Ouardi, has declared that “a Morocco without hepatitis C” is the aim for the North African country. The statement was included in his announcement that a Moroccan generic brand medication for hepatitis C would be available for purchase from December 2015.
Around 180 million people worldwide, and an estimated 20,000 to 50,000 people in Ireland, have hepatitis C. Currently, there is no effective vaccine available for hepatitis C and Interferon treatment is costly - often in the region of €50,000 ($AU72,516) per individual lengthy, associated with side effects and is not 100% effective.
The generic drug, made by Moroccan laboratory Pharma 5, contains sofosbuvir which can cure hepatitis C in three months, and which has been authorised for sale on the market using the trade name “SSB”.
Margaret Chan told a conference in Geneva there were “some very serious concerns” about the TransPacific Partnership (TPP). “If these agreements open trade yet close the door to affordable medicines we have to ask the question: is this really progress at all?” Chan asked. The deal's backers, including the US, Canada, Japan and Australia, say it will cut trade barriers and set common standards across 40% of the world's economy. But other bodies, including leaders of India's pharmaceuticals industry, have said it could end up protecting the patents of powerful drug companies inside the deal area, at the expense of makers of cheaper generic drugs outside. “Unless we get these prices down many millions of people will be left behind," Chan told the conference.
Abridged from: skynews.com.au Read in full: bit.ly/1JVWwIQ
18 Hep Review #90 | Nov-Feb 2016
Houcine El Ouardi
It will be sold at 3,000 dirhams ($AU1,115) per box or 9,000 dirhams ($AU3,345) per treatment, while the original drug, under the pharmaceutical brand Sovaldi has a retail price of 800,000 dirhams ($AU300,000) . 625,000 Moroccans are living with hep C and only have access to Interferon treatment and the unpleasant side effects make most patients relinquish the treatment.
Numerous recent outbreaks of hepatitis C in people living with HIV internationally have highlighted the urgent need for a vaccine to prevent infection. People living with HIV are at increased risk of hepatitis C infection due to some similar routes of acquisition. Hepatitis C infection also progresses more rapidly to liver damage in people living with HIV. Approximately 20-30% of people with HIV are co-infected with hepatitis C. “A safe, affordable and effective vaccine for hepatitis C would have a huge impact on combating hep C given the multitude of people who are unaware of their diagnosis and represent a potential source for new infections,” said Dr Ciaran Bannan - a research fellow in Trinity College Dublin and the Department of GU Medicine and Infectious Diseases at St James’ Hospital - who is leading the research with Professor Colm Bergin, Clinical Professor of Infectious Diseases, School of Medicine.
El Ouardi spoke of a “new national strategy for the drug industry capable of meeting domestic demand.”
Abridged from: moroccoworldnews.com Read in full: bit.ly/1PcqyKQ
Hepatitus C virus
NEWS
WORLD NEWS NEWS | INTERNATIONAL
The study, which is the first phase-1 vaccine study in HIV infected people in Ireland, is also the first of a planned number of early intervention studies to be carried out in the Wellcome Trust-HRB Clinical Research Facility, a joint enterprise between Trinity College Dublin and St James’s Hospital. The research team is evaluating the safety and the ability of a new vaccine to produce an immune response against hep C. Previous healthy volunteer studies in the University of Oxford have shown encouraging results. If effective, this vaccine could also be made available to other high risk groups such as people who inject drugs. The study, which will run for 20 months, will follow 20 patients in Dublin and St Gallen, Switzerland. Patients will be given two vaccines eight weeks apart and then followed closely to assess safety and the development of immune responses to hep C following vaccination.
Abridged from: medicalxpress.com Read in full: bit.ly/1U8gGjb HEPATITIS C PREVALENCE IN THE UNITED STATES IS HIGHER THAN WHAT’S USUALLY REPORTED Hepatitis C, the most common bloodborne virus in the US is now curable however an article by Brian Edlin and colleagues in Hepatology has thrown light on an issue that needs to be addressed. Estimates of the prevalence of chronic hep C infection in the US rely on data gathered from the National Health and Nutrition Examination Survey (NHANES). The purpose of the NHANES is to survey the health of the US adult and child population. Using questionnaires, lab tests and
physical exams, NHANES tracks diseases, health risks, and the relationship between diet and health.
Drug Application that seeks approval of its combination drug to treat all genotypes of chronic hepatitis C infection. The FDA grants the designation for investigational drugs that would significantly improve the safety or effectiveness of the treatment of a serious condition when compared to standard applications.
Participants are selected based on a formula intended to represent the U.S. population of roughly 319 million. There are 5,000 participants in the NHANES however the sample size is not the problem. The bigger issue is that NHANES does not count people who are in the military, homeless, in temporary housing, incarcerated, hospitalised, or institutionalised. It does not include people who live on Indian reservations or in a US territory. NHANES does not survey those who don’t want to be documented or reveal their HCV status. In short, NHANES doesn’t include a portion of the population where the hepatitis C prevalence is higher than average. Rather than the 2.7 million people living with hepatitis C, Edlin estimates that there are up to 3.5 million people living with hep C in the U.S.A.
Abridged from: huffingtonpost.com Read in full: huff.to/1V3joGY FDA GRANTS FASTER REVIEW FOR GILEAD’S HEPATITIS C NEW DRUG APPLICATION The US Food and Drug Administration has granted Gilead Sciences a priority review of a New
The past two years have seen a revolution of sorts in the treatment of hepatitis C with the development and approval of new yet pricey drugs that have much higher cure rates. There is no single drug currently on the market that is approved to treat all six genotypes of the virus. If approved, the Gilead regimen could be the first pan-genotypic drug for hepatitis C to hit the market. The pharmaceutical company Merck is also working to develop a one-pill drug that could potentially treat multiple genotypes of the virus.
The faster review time for Gilead’s NDA means federal regulators could decide whether to approve the drug by mid-2016. The drug combination remains an investigational product and its safety and efficacy have yet to be established, Gilead noted in the release.
Abridged from: hcplive.com Read in full: bit.ly/1ZIqgjL
hep.org.au | Hep Review 19
Fungi's story
B
eing free of hepatitis C has given me my life back. I am finally free of the emotional stress that comes from living with the constant fear of death. I have regained my strength and it feels so good to not be tired anymore and free of the brain fog that plagued me for years. My journey began in Africa 47 years ago when I was born in Zimbabwe. Back then, the sharing of razor blades was a cultural norm. I came from a large family where sharing was the order of the day. Uncles, aunts and cousins would forget their toothbrushes or razors and just grab someone else's from the cupboard. We had no idea about transmissible diseases and the impact they would have on the individual and community. Even in hospitals, nurses would share medical injecting equipment between two, three or more people. I suffered a ruptured appendix and required surgery while I was still in Zimbabwe. Looking back, I realise the syringe that was used to deliver my medication had most likely been used previously on another patient.
20 Hep Review #90 | Nov-Feb 2016
As the years went by and the political situation started to change in my home country, I migrated to New Zealand and settled in Wellington in 2001. Starting a new life, I had no choice but to work wherever I could. I worked as a handyperson, an industrial cleaner, laundry worker, dishwasher and nurse's aide. I was constantly exhausted, but at the time I put it down to the hard labour. In 2007, I was working as a health promoter in the area of HIV and AIDS. While the job wasn't physical I still felt tired. I started forgetting simple things and had serious episodes of brain fog. One day in the middle of the street I couldn't remember which side I was crossing to, where I was, who I was or where I was going - I knew something was seriously wrong. I did a lot of reading
Image: Fungi at Hepatitis NSW | Image by RAF
“
Sometimes I wonder what would have happened to my health if I did not get treatment - I guess I might be on the liver transplant list or worse, in a grave somewhere.”
about infections and viruses and one day came across information on the hepatitis C virus. I insisted on getting the test after reading about how the re-use of medical equipment could put people at risk. I was tested and it returned a positive diagnosis. I spent a few weeks running around like a headless chicken trying to get information, which ultimately just confused me more. I didn't understand the medical terms or what having hepatitis C meant. I went through a lot of emotions. I wanted to know, "Why me?" I was angry that I didn't know how I was infected with the virus or for how long I had been living with it. I began to fear death and wish I had done more with my life. I then moved to the acceptance phase, "Yes, I have hepatitis C, so what?" This disease happens to affect human beings and I am a human being who happens to be infected. I found help in the form of the internet and the Hepatitis NSW website which made it easier for me to cope with the virus. I started interferon treatment in January 2008, which lasted for 48 weeks. The side-effects were horrible. I had rashes on my skin like a stamp, but I was focused on treatment and getting rid of the virus. I was cleared one year later. I have since completed a Post Graduate Diploma in Public Health, a Diploma in Project Management and Certificate IV in Training and Assessment. This would not have happened before treatment as I was suffering from serious brain fog. Getting treatment has meant that the
government is not responsible for looking after me or my young children anymore. I moved to Australia and I am proud of my contributions to society. Sometimes I wonder what would have happened to my health if I did not get treatment - I guess I might be on the liver transplant list or worse, in a grave somewhere. Treatment has been very important in my life. My son was five years old when I began treatment and saw me struggling with side-effects every day. I can't imagine how hard it has been on him. He has seen the changes over the years though and finally has his Mum back. I am thrilled that there are new therapies being developed with a much shorter treatment time and with fewer side-effects. These treatments mean less suffering and a quicker solution to symptoms that can be unbearable or even lead to an eventual death. Originally published in Together We Can: See Our Future telling the personal stories of a group of Australians who have been impacted by hepatitis C and details of their fight to break the chains of stigma and cure the virus that threatens their health and well-being. Read online: hepatitisaustralia.com/together-we-can
C-EEN & HEARD Our positive speaker service program, C-een & Heard, let’s you share first-hand in someone’s personal account of living with hepatitis C. The power of a personal story is universal and a C-een & Heard speaker will enhance your existing training and education initiatives with a personal perspective.
To book a speaker please call the Hepatitis Infoline: 1800 803 990 Contact Susanne Wilkinson: swilkinson@hep.org.au | 02 8217 7716 hep.org.au | Hep Review 21
By Helen Blacklaws Helen is the Hepatology Nurse Practitioner for Central Coast Health, and has been working in the area of viral hepatitis for the past 15 years. She is very much looking forward to the new era of hep C treatment and being able to say “cured� to many more people. Editors note: This article was written prior to the announcement regarding the general availability of new direct acting anti-viral, pill based medications for all Australians living with hepatitis C - including for people who inject drugs. However, the issues raised by Helen are still highly relevant regardless of the hepatitis C treatment program.
DAVID INJECTS DRUGS. DAVID HAS SUCCESSFULLY COMPLETED HEP C TREATMENT.
P
DAVID IS PRETTY PLEASED ABOUT THIS.
eople who inject drugs comprise a substantial proportion of people living with hepatitis C, yet disproportionately few receive anti-viral treatment. The reason for this imbalance is complex, but there is some suggestion that people who inject drugs are being discouraged from treatment.
Image by Mike Fritcher | flic.kr/p/s823aK
22 Hep Review #90 | Nov-Feb 2016
There may be some people who inject drugs who feel that, when it comes to treatment, now is not the right time, but the person who has made an appointment to discuss their treatment options has made a considered decision that now is the right time. We are all aware that discrimination against people with hep C is, unfortunately, rife. People with hep C who inject drugs face a double whammy of discrimination. Withholding treatment on the grounds of current injecting drug use doesn’t stack up: we don’t refuse to treat the smoker’s lung cancer, detox units and rehabs don’t refuse a second admission on the basis the individual may relapse again. We are currently witnessing the predicted rise (and rise) in the number of people developing advanced liver disease after 30+ years of infection. It seems illogical not to encourage treatment in the largest hep C population and risk a second wave of advanced disease in years to come. So, what are the concerns regarding treating people who are current injecting drug users? Issues that have been raised are: injecting drug use will lead to poor adherence to medication, side effects of therapy may lead to an escalation of drug use, development or exacerbation of mental health problems, and risk of reinfection post treatment. The latter is probably the most commonly cited reason against treating people who inject drugs. Opinions and concerns are one thing, but what is the evidence to support these concerns; what does the research say?
Essentially, the research tells us there is very little cause for concern, and it probably should be mentioned that most of the evidence regarding the ‘concerns’ relates to people undertaking interferon based therapies. Whilst not everyone has a terrible time on interferon, I doubt there would be many who would say it was a pleasant experience. When the long awaited non-interferon ‘perfectavirs’ (finally) arrive, the situation can only improve. Let’s have a look at the arguments one by one. For the sake of brevity I’ll only cite one or two papers per argument, but a quick PubMed or Google search will reveal very many more.
TREATMENT ADHERENCE The evidence shows that people who inject drugs have similar adherence rates to non-users. A study designed to measure treatment adherence in opioid substitution treatment clinics (OST), amongst people who had recently injected drugs, found adherence was 86%.1 Likewise, a further study showed that injecting drug use prior to or during treatment did not affect adherence rates. They concluded that that high levels of adherence were observed, and that any sub-optimal medication was due to treatment discontinuation and not missed doses.2 Treatment adherence is of course reflected in sustained viral response (SVR) = cure. As you would imagine, given that adherence is similar in people who inject
Continued next page...
hep.org.au | Hep Review 23
“
...there are no justified grounds for not treating people who inject drugs, and compelling evidence that treating people who inject drugs is safe and effective.”
drugs and those who do not, so is the cure rate. Cure in people who inject drugs is comparable to those who do not.3 As with all populations, differences in cure were largely attributable to the individual’s genotype. Again, it should be emphasised that these studies were in the interferon era. New treatments with minimal side effects and shorter durations have SVR rates in the order of 95% plus. As cure/adherence rates were comparable in the interferon days, it can only be assumed that outcomes will get a lot better in the ‘new era’.
use for fear of discrimination or having their treatment discontinued. Exacerbation or development of mental illness is a risk associated with interferon treatment and is not particular to any one group.
RISK OF HEPATITIS C REINFECTION This is probably the issue that causes most concern ‘treating current injecting drug users is futile, as people may re-infect post treatment’. Whilst it would be foolish to suggest that reinfection post treatment does not occur, estimates of the rate of reinfection suggest the incidence is low. And it should be borne in mind that if no people who inject drugs are treated then 100% will remain infected, with ongoing progressive disease and the potential to transmit the virus to others. It seems logical that treating people who inject drugs far outweighs the small risk of reinfection post treatment. The following is a snippet of the evidence: n The estimate of HCV reinfection was low.5 n The rate of reinfection is low after HCV antiviral treatment.6 n The rate of reinfection following treatment for HCV is low.7 n Low incidence of reinfection following treatment.8 n The reinfection incidence is low.9
POTENTIAL ESCALATION OF DRUG USE Hepatitis C treatment was found to be safe and effective as the treatment experience did not lead to an increase in drug use or unsafe injecting. In fact, the reverse was found; a decrease in equipment borrowing.4 Escalation of drug use may occasionally occur; it would be impossible to say categorically that it wouldn’t. What I can say is, that in my 15 year’s experience there has been just one occurrence where a person’s drug use escalated to the point where there were undesirable outcomes.
EXACERBATION OR DEVELOPMENT OF MENTAL HEALTH ISSUES Firstly I would say that, having accompanied many hundreds of people on their treatment journey, interferon related mood change will affect just about everyone to a greater or lesser degree. If concerns regarding mental health were an exclusion criteria our liver clinics would be pretty empty and we’d have a lot of time on our hands! A person with florid psychosis would not be a suitable candidate for treatment regardless of ‘injecting status’. Unfortunately it is sometimes, although rarely, the case that severe psychiatric side effects result in early cessation of treatment. Support and early intervention can go a long way towards alleviating deterioration in mental health but this may be hampered if an individual feels they can’t disclose injecting drug
24 Hep Review #90 | Nov-Feb 2016
It would seem that the jury’s in, and current injecting drug use should not be a barrier to treatment.
REFERENCES Grebely. J. et al. (2015), “Treatment for hepatitis C virus infection among people who inject drugs attending opioid substitution treatment and community health clinics: The ETHOS Study.” Addiction, doi:10.1111/add.13197. 1
Grebely J. et al. (2011), “Adherence to treatment for recently acquired hepatitis C virus (HCV) infection among injecting drug users.” Journal of Hepatology, 55(1), 76-85. 2
Alavi M. et al. (2015), “Injecting risk behaviours following treatment for hepatitis C virus infection among people who inject drugs: The Australian Trial in Acute Hepatitis C.” International Journal of Drug Policy, 26, 976-983. 3
Martin N.K. et al. (2015), “HCV treatment rates and sustained viral response among people who inject drugs in seven UK sites: real world results and modelling of treatment impact.” Journal of Viral Hepatitis, 22(4), 399-408. 4
Aspinall E.J. et al. (2013), “Treatment of hepatitis C virus infection among people who are actively injecting drugs: a systematic review and meta-analysis.” Clinical Infectious Diseases, 57 Suppl 2: S80-89. 5
This brings us on to the subject of treatment as prevention (TaP), a subject I admit I had not previously given a lot of thought. In October I was fortunate enough to attend the INHSU (hepatitis care for substance users) conference where the message was very clear. Not only do we need to treat people who inject drugs, we need to treat lots of people who inject drugs. The theory of TaP is as follows. Treating a large number of people who inject drugs will reduce the ‘pool of infection,’ thereby reducing the number of new infections, thus reducing prevalence. Sounds easy, but the crucial point is the ‘large number of people’. Even with the new hepatitis C drugs, business as usual in terms of the number of people treated will not alter the prevalence of hepatitis C. The number treated needs to be up-scaled to have any impact. It is suggested that even a fairly modest increase could reduce prevalence by 15%, and a substantial scale-up could reduce prevalence by 75% in 15 years.4,10 Certainly something to think about. In conclusion, I think it’s safe to say that there are no justified grounds for not treating people who inject drugs, and compelling evidence that treating people who inject drugs is safe and effective. And finally, the question was asked “...excluding people who use drugs or alcohol from access to hepatitis C treatment – is this fair, given the available data?”11 The summary was that “there is no good ethical or health based evidence” for excluding people who inject drugs from hepatitis C treatments.
Arain A., Robaeys G. (2014), “Eligibility of persons who inject drugs for treatment of hepatitis C virus infection.” World Journal of Gastroenterology, 20(36), 12722-17233. 6
Grebely J. et al. (2010), “Reinfection with hepatitis C virus following sustained virological response in injection drug users.” Journal of Gastroenterology and Hepatology, 25(7), 1281-1284. 7
Grady B.P.et al. (2012), “Low incidence of reinfection with the hepatitis C virus following treatment in active drug users in Amsterdam.” European Journal of Gastroenterology and Hepatology, 24(11), 1302-1307. 8
Grady B.P., Schinkel J., Thomas X.V., Dalgard O. (2013), “Hepatitis C reinfection following treatment among people who use drugs.” Clinical Infectious Diseases, 57(S2), S105-110. 9
Martin N.K. et al. (2013), “Hepatitis C virus treatment for prevention among people who inject drugs: Modeling treatment scale-up in the age of direct-acting antivirals.” Hepatology, 58(5), 1598-1609. 10
Grebely J. et al. (2015). “Excluding people who use drugs or alcohol from acess to hepatitis C treatments – Is it fair given the available data?” Journal of Hepatology, 63, 779-782. 11
hep.org.au | Hep Review 25
N
ew treatments for hepatitis C will be available for all people in Australia from 1 March 2016 and that’s good news for the estimated 10 to 20% of people living with HIV in Australia who also have hepatitis C. Hepatitis C is a more serious illness for people who also have HIV than it is for people who don’t, because HIV can cause hepatitis C to progress more rapidly to serious liver disease. The best way for people living with HIV and hepatitis C to manage the risk of developing serious liver disease is to get treated for hepatitis C and clear the infection. A new study being coordinated by the Kirby Institute at the University of NSW will provide an opportunity for people living with HIV who also have hepatitis C to get ready for the new treatments when they come. Called CEASE, the study will look into the feasibility of rapidly increasing hepatitis C treatment amongst people who also have HIV, and how that would help control hepatitis C infection among people living with HIV. “Hepatitis C treatment is really important for people living with both hepatitis C and HIV and we look forward to new treatments for hepatitis C being available,” Positive Life NSW CEO Craig Cooper said. Older interferon-based treatments for hepatitis C were often not well tolerated, and many people who receive these treatments report side-effects which resemble the flu, such as shivering, muscle aches and fatigue. New treatments with minimal side effects will encourage more people with HIV to seek treatment, and enable
26 Hep Review #90 | Nov-Feb 2016
more to tolerate and stay on treatment once they’ve started. Once cleared, it is also important people living with HIV do what they can to avoid being reinfected with hepatitis C and that requires knowing how to reduce the risk. The rate of reinfection with hep C among people who also have HIV is of concern. Successful treatment for hep C and clearing the virus provides no protection against becoming infected again. Some people manage to clear hep C without treatment, but this too is no guarantee the virus will be cleared a second time. The risk of hep C infection can be reduced by always using sterile injecting equipment or, during sex, by changing condoms and lube between each partner if you’re playing in a group, washing your hands with soap between glove and condom changes, using non-latex gloves to avoid skin damage caused by allergic reactions to latex, washing sex toys with warm soapy water between each partner, and bringing your own lube containers or keeping containers clean with soapy water. Getting tested regularly for hepatitis C and other sexually transmitted infections is also important, as is getting vaccinated for hepatitis A and B and the human papillomavirus (HPV).
“I like being able to help people who are going through what I’ve been through, I wish HepConnect was around back when I was on treatment.” “HepConnect definitely helped me, and I am motivated by other people who have been through the treatment.”
by Scott Harlum, Communications & Policy Officer, Positive Life NSW
A new study being coordinated by the Kirby Institute at the University of NSW will provide an opportunity for people living with HIV who also have hepatitis C to get ready for the new treatments. Information collected in this study will be used to create strategies that will allow for efficient access to new medications for hepatitis C. You are eligible if you: n Have HIV n Have or have previously had hepatitis C n Are 18 years of age or older
“It’s so much better to talk to someone than bottling it all up inside, especially if you are on treatment.”
This study involves up to three visits over five years. During each visit you will complete a survey, collect a sample of blood through a finger prick and have your liver assessed by FibroScan (where available).
For more information and to participate: email: cease.kirby.unsw.edu.au or speak to your doctor today
“Throughout my 24-week treatment she was the only person I had contact with that had hep C. It meant so much to me to actually speak to another person who has been affected by hep C.”
Control and Elimination within Australia of hepatitis C from people living with HIV
Hep Connect treatment peer support
1800 803 990 hep.org.au | Hep Review 27
hepcaustralasia.org The largest online support community for people living with hep C in Australia run by people with hep C for people with hep C
“What I love about hepcaustralasia is that it gives me a place to go where everyone is in the same boat. We can talk freely about our experience without having to disclose to the wider world. And, most importantly, it provides valuable advice and support for those of us on treatment. It is a long, hard road but it’s made a lot easier by having sympathetic, like-minded people to talk to.� Dee hepcaustralasia forum moderator 28 Hep Review #90 | Nov-Feb 2016
World-first hep C research in NSW Prisons scales up A
world-first study of hepatitis C testing and treatment in NSW prisons is set to deliver highly effective directly acting antiviral (DAA) therapy to hundreds of people living in incarceration with hepatitis C. The Surveillance and Treatment of Prisoners with Hepatitis C (SToP-C) study aims to eliminate hep C infection in the four correctional centres participating in the study. By testing all prisoners at these centres and offering treatment to everyone with chronic hep C infection, researchers at the University of New South Wales (UNSW) hope to halt the transmission of the virus. The SToP-C study started with 6-monthly testing of all prisoners at Goulburn Correctional Centre in late 2014 and Lithgow Correctional Centre in 2015. In February 2016 Dillwynia Women’s and the Outer Metropolitan Multi-Purpose Correctional Centres (OMMPC) will join the study. A non-invasive FibroScan assessment of liver health is performed in the prison health centre for everyone with chronic hepatitis C infection, to identify and measure any scarring present. The Treatment Phase will be introduced at Goulburn by mid-2016 and at the other centres in the second half of this year. The treatment available through the SToP-C study is a combination of two highly effective new drugs, sofosbuvir and velpatasvir. It involves taking one tablet once daily for 12 weeks, with minimal side effects. Results of clinical trials of this combination released in November 2015 showed that the treatment cures all genotypes of hep C in over 95% of people. It is effective in people with liver cirrhosis (or scarring) and those who have previously undergone treatment, two groups in which interferonbased therapy was less successful. The SToP-C medication has been developed by the pharmaceutical company Gilead Sciences Inc. An application was submitted for its approval by the US Food and Drug Administration in November 2015.
In parallel to the SToP-C study, the number of prisoners treated in all NSW correctional centres is likely to significantly increase in 2016, when DAA treatment becomes available through the Pharmaceutical Benefits Scheme on 1 March. Prisoners participating in hep C testing under the SToP-C study can opt to have standard of care therapy offered through Justice Health and Forensic Mental Health Network (JH&FMHN) or the SToP-C medication. The SToP-C study will evaluate the impact of this treatment as prevention approach, based on similar successful strategies in HIV. It is a National Health and Medical Research Council (NHMRC) Partnership Project led by UNSW in collaboration with the JH&FMHN, Corrective Services NSW, NSW Health, Hepatitis NSW, NSW Users and AIDS Association and Gilead. The project is expected to conclude in 2018.
Prisoners at the participating correctional centres (Goulburn, Lithgow, Dillwynia and OMMPC) should ask to speak with the SToP-C nurse or contact the NSW Prisons Hepatitis Infoline.
hep.org.au | Hep Review 29
The Multicultural HIV and Hepatitis Service (MHAHS) provides support to HIV-positive people or people who are undergoing hepatitis C treatment. The Service specifically targets more than 20 language groups, but is also available to other individuals and communities from culturally diverse backgrounds seeking assistance. Clients with hepatitis C who are undergoing treatment can be referred to the Clinical Support Program by liver clinic staff, social workers and specialists. MHAHS bilingual/ bicultural assist clients with: n Access to the health care system and other services n Emotional support n Liaising with case managers or other health care workers n Facilitating discussions regarding treatment issues The Clinical Support Program is available in the Sydney Metropolitan area. It may be possible to provide support to clients living outside these areas. All services are free and confidential.
Visit mhahs.org.au for more information on chronic hepatitis B in Arabic, Chinese, Indonesian, Khmer, Korean, Thai & Vietnamese Sources: Hepatitis B Mapping Project 2011, ASHM, VIDRL | Hepatitis B Mapping Project 2012-13, ASHM, VIDRL, Doherty Institute | NSW Hepatitis B and C Strategies 2014 Annual Data Report, NSW Health Design originally from “Two Paths of a Bullied Student�, K12 Blog
30 H Hep ep Review #90 | Nov-Feb 2016 30 Review #90 | Nov-Feb 2016
K
urt Brereton is a NSW based visual and digital media artist, writer and a creative arts and design academic. He has held numerous exhibitions of his work and is self-published. Kurt has also lived with hepatitis C for many years and during that time has focused his art on exploring treatment and other related themes through his evocative imagery. Hep Review recently spoke with Kurt about his art, living with hep C and how the two have been a part of his journey.
For Kurt, his interferon based treatment was the catalyst that turned his creative interests towards using art to express life with hep C. “Art is an excellent therapeutic way of externalising or distancing difficult emotions,” he says. “It makes it easier to reflect on life at any given time.” He wanted to document his journey in a way that
would serve as a record of how he was feeling physically and emotionally at each stage of his 12-month triple drug treatment. He first thought of setting up a video camera and saying a few sentences each morning to camera.
Continued next page...
hep.org.au | Hep Review 31
He then considered a conventional written diary, then a series of photographs and a scrapbook. However, in the end he realised that on some days it was not possible to muster enough energy to concentrate on maintaining a regular daily record. He settled on producing a series of paintings that would serve as time maps - “rather like a graph over time”. These abstract grid paintings look like DNA printouts, medical or scientific records of emotions experienced over the period of treatment. Unfortunately Kurt is in a small 3% of the viral population who experience what is called Viral Breakout Syndrome, meaning the hep C virus did not fully clear after his first interferon treatment. “I’m told my liver had a rest for the 12 months during treatment, even if it didn’t feel like a picnic,” he said. Once Kurt had finished his series of paintings he thought he should write something about the impact of virality on not just the individual but on our culture in general. “It was apparent to me that many things in our lives function like a virus (the media, internet, relationships amongst them) and this is now one of the defining characteristics of our digital age.” The result was a small book called Test Results that both documented the art works while offering some critical and personal commentaries on virality. Kurt draws inspiration from the details of medical and scientific processes of treatment and testing, and working with this gave him the opportunity to transform
32 Hep Review #90 | Nov-Feb 2016
his experiences of treatment, testing and living with hep C into evocative imagery. He finds that it is always a lot easier to deal with adversity in life if you are being creative - being a producer and not just a passive consumer. “It is your life, body and mind, and your personal future is an ongoing dramatic performance work.” He notes that one of the most debilitating side effects of the hep C treatment was the depressive episodes you can sink into. “You’re shaking hands with death in a very exposed manner. And you have to commit your body that bag of organs, chemicals, pipes and pumps always in a state of chaos - to the medical industrial complex. You lurch from blood test to liver scan and from hospital appointments with nurses and specialists and then back to bed, family and even a job.” Kurt jokes that the world is divided into two; those people who have been through treatment and those who haven’t. He acknowledges that it is the same with many extreme life experiences. “The shock always seems to come out of the mundane quarter - that phone call from your nurse, when you least expect it. As the saying goes, life is bad for your health.” When asked if his work has helped him deal with frustration or anger, Kurt says he has never felt angry about his situation - “it’s too exhausting”. Instead he
Left: Test Results (end of treatment), 130cm x360cm, 2014 Previous page: Test Results (at six months), 152cm x 183cm, oil on canvas, 2014
tries to see the comic or ironic sides to life. “Feeling selfpity is a part of depression and of course, at the time, it all makes perfect sense.” Art is a very personal form of therapy for him and he believes it can touch or ring true to other people too. “Because art and life need each other to exist, all the same emotions, ideas and responses come with the work.” He sees the big difference is that the artist has some control over what is produced and how it is exhibited. He adds that above all else lies the simple, and perhaps most important role of art - the opportunity to reflect upon life and to imagine new ways of being. Has Kurt faced any stigma or discrimination because of his status or the content of his work? “For many years I told no one at work I had hep C. It did not affect my job performance so I kept it out of the equation. Most people still know very little about the virus and how it sleeps in your system before causing havoc.” As regards art, Kurt notes that Australia is the country of “polite indifference” and that it is a rare to ever receive any feedback on one’s art. “Silence is the pervading critical voice. There are welcome noisy exceptions of course. A few critics, friends and other artists will offer a few words of insight and encouragement,” he says. But he adds that with any exhibition a number of people will engage in serious discussions about his work - and they are often the people who end up buying from him. He says he has had little feedback on his Test Results body of work or
the book outside of the “hep C community”, although the community itself has been very positive. “The book especially seems to have been useful to counsellors and I’m working on developing an art therapy kit for people going through treatment.” Sometimes it takes a while before you hear anything back through the noisy static of recent shows, new posts and present concerns. The Test Results exhibition was shown at the Shoalhaven Regional Art Centre in Nowra last June through July. The book was launched at the same time. Kurt says it was a low-key affair with not a lot of publicity. “Still, the gallery and key people in the local Shoalhaven and Illawarra medical spheres expressed a desire to represent the paintings and book as a part of a larger solo exhibition.” That exhibition, titled Biographs, will be featured at the gallery from November 2016 to February 2017... put it in your diary! Does his work help people draw inspiration or strength? Kurt hopes that the public will reflect on the hepatitis C epidemic and the issues of treatment in a way that is not didactic or moralistic. At the time of the interview there had been no announcement from the Australian Government regarding the listing of new medications on the PBS and Kurt had hoped his work might help convince the powers that be to list the new drugs before too many more people die for lack of access. Given recent developments we can only wonder!
Continued next page... hep.org.au | Hep Review 33
Top: Day By Day (in a similar vein), 137cm x 304cm, oil on canvas, 2014 Left: Self-portrait (ego machine), 50cm x 70cm, oil on mirror, 2014
Having taught many art workshops over the years, Kurt knows that everyone who tries their hand at creating some form of record (diary, photo album, drawings, video, whatever) has felt a lot more in control of their own destinies. “You don’t need any special skills and there are no standards to meet and no one is going to say, ‘that is terrible’. It is for you and by you and that’s what really matters. If you want to show it to anyone else that is up to you.” Kurt is now working on a few new paintings that incorporate embroidery for his solo show. He adds that he has never done any embroidery, but has got a few books out of the library and is feeling excited about seeing what he can do. He has also recently published a forty-year collection of his selected photographs titled The Shock of the Ordinary (Photographs 1975 – 2015).
34 Hep Review #90 | Nov-Feb 2016
Test Results & more about Kurt There are still some signed and numbered copies of Test Results available at the Shoalhaven Regional Art Centre in Nowra. Kurt produced a limited number of copies with original art works bound into the covers. Once they are sold out he will produce an e-book version online at lulu.com for free download. To see his artwork including the Test Results exhibition visit kurtbrereton.com Kurt is also happy to talk to anyone going through treatment or who would like to do any art workshops with him.
halc WHAT CAN YOU DO ABOUT DISCRIMINATION? Do you feel you have been discriminated against or victimised? You can make a complaint to the NSW Anti-discrimination Board or the Australian Human Rights Commission. Complaints of vilification can also be made to the Anti-discrimination Board. HALC can provide you with legal advice and representation to help you with your complaint.
CALL 1800 063 060
HIV/AIDS LEGAL CENTRE halc.org.au
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hep.org.au | Hep Review 35
OBITUARY | Emeritus Professor Yvonne Cossart AO
A CHAMPION AND A PASSIONATE VOICE
O
n behalf of Hepatitis NSW we wish to mark with great sadness the passing on 16 December 2014 of Emeritus Professor Yvonne Cossart AO.
Although best known for her discovery of the parvovirus B19, viral hepatitis was Yvonne's great passion. Yvonne was a stalwart of the Australian viral hepatitis community from the very start of the "duck hepatitis B" meetings in the mid-1980s, through the formation of the Australian Centre for Hepatitis Virology and through her work at the former King George V Memorial Hospital for Mothers and Babies in Camperdown, Sydney NSW. I met Yvonne when we both served on the inaugural NSW Hepatitis Advisory Committee – quickly to become the Ministerial Advisory Committee on Hepatitis. Yvonne’s articulate and feisty advocacy for women with hepatitis B – and their babies and families – particularly women from SE Asia, China and the Pacific Islands gave her colleagues very good insight into Yvonne’s passion for those women and their children and her in-depth knowledge of the health and social dilemmas they were facing . In the mid-1990s - when a broadening and specific and funded focus on hepatitis C was starting and contributed to greatly by advocacy from hep C-affected communities - it was Professor Cossart who strongly led the advocacy push for a policy and program response at the NSW state level for people living with hepatitis B.
“...it was Professor Cossart who strongly led the advocacy push for a policy and program response at the NSW state level for people living with hepatitis B.”
Yvonne was a champion and a passionate voice for people living with hepatitis B. Yvonne also served as a diligent and exceptionally supportive member of Hepatitis NSW’s Medical and Research Advisory Panel. Yvonne taught us much about the thinking and details and risks behind the terribly difficult moral and medical dilemma presented by the choice whether, in the late 1980s, to test Australia’s blood supply for surrogate markers of HCV infection or not. The Senate Inquiry into Hepatitis C and The Blood Supply in Australia in 2004 put an end to the very divisive debate about compensation that had raged for some years. Hepatitis NSW would like to pay tribute to Emeritus Professor Yvonne Cossart AO – a woman and leader who did so much to advance the cause for and lives of people affected by viral hepatitis. Stuart Loveday CEO, Hepatitis NSW
36 Hep Review #90 | Nov-Feb 2016
IT’S BETTER TO KNOW
B
CAN YOU HELP US GET THE WORD OUT? Hepatitis NSW will be launching a new campaign in 2016 called It’s Better to Know. We are looking for people with lived experience of hepatitis B to get involved with the campaign.
B
An estimated 77,000 people in NSW have hepatitis B, although more than 40% of these people don’t know they have it. Because of this they are unable to access treatment, care and support that could prevent them from getting sick from cirrhosis of the liver or liver cancer. It’s Better to Know will work with some of the communitiues most affected by hepatitis B and explain why it’s better to know if you have hepatitis B. If you, or someone close to you, has hepatitis B, if you are a community leader from a culturally and linguistically diverse community, or if you were born in a country with a high rate of hepatitis B (such as Taiwan, Vietnam, China, Cambodia, Afghanistan, Philippines, Fiji or Korea) or if you are Aboriginal and/or a Torres Strait Islander we want to hear from you.
contact: David Pieper | phone: 02 9332 1853 | email: campaigns@hep.org.au
hep.org.au | Hep Review 37
The health of, Australia s prisoners 2015
A
report titled The Health of Australia’s Prisoners 2015 was released by the Australian Institute of Health and Welfare late last year. It reports on the National Prison Health Indicators, developed to help monitor the health of prisoners, and to inform and evaluate the planning, delivery and quality of prison health services. The report includes data on thousands of people in custody, including those entering and leaving prisons, from all states and territories. Participation was not universal and by the Institute’s own admission the information in the report needs to be interpreted with some caution. Although the report covers a wide number of indicators regarding prisoner health, both physical and mental, Hep Review is looking specifically at the information related to hepatitis B and C, and to injecting drug use. The Health of Australia’s Prisoners provides a useful snapshot of hepatitis prevalance amongst people in custody in Australia and highlights the need for needle and syringe programs within Australia’s prisons.
38 38 H Hep ep R Review eview #90 #90 || Nov-Feb Nov-Feb 2016 2016
The content of this article has been edited from The Health of Australia’s Prisoners 2015 © AIHW 2015 aihw.gov.au
BLOOD-BORNE VIRUSES
The proportion of those entering prison in 2013 who tested positive to a blood-borne virus were 31% with hepatitis C and 18% with hepatitis B. There were no prison entrants testing positive to HIV, a result unchanged since 2010. In this article we’ll focus on the hep C and hep B data from the report.
HEPATITIS C
As we know, hepatitis C is one of the most commonly reported notifiable diseases. There were an estimated 230,000 people in Australia who were living with chronic hepatitis C infection in 2012. Untreated it can result in progressive liver inflammation, which can lead to liver disease and failure, as well as cancer. People in custodial settings are listed in the 2014-17 National Hepatitis C Strategy as a priority population; their increased risk of infection is due to the use of non-sterile injecting equipment, sharing of tattooing and piercing equipment, and other blood-to-blood contact. Acute Hepatitis C virus infection often has few noticable symptoms, which makes the timing and source of
transmission difficult to determine. In one study of 79 prisoners with acute hep C in New South Wales prisons, three of four likely in-custody transmissions identified were related to drug injecting and equipment.1 In June 2015, the Australian Federal Parliamentary Standing Committee on Health Inquiry into Hepatitis C in Australia made a number of significant recommendations, including: n The Australian Government, in collaboration with the states and territories, should work to develop well-informed awareness campaigns targeted at populations at high-risk of hep C infection (including prisoners), informing them of transmission risks, prevention strategies, and the availability of voluntary testing. n The Department of Health should work with state and territory health and corrections agencies to: o develop a standard approach to data collection and reporting of prisoner health in custody; and o consider support for safe tattooing, barbering and other legal practices which may present a risk of hep C transmission in custodial settings.
Continued next page... Table 1: Prison entrants who tested positive for hepatitis C, 2013 Tested positive for hep C antibody
%
Total prison entrants tested
Male
131
29
454
Female
34
41
82
9
23
40
Sex
Age group under20 20–24
11
12
95
25–29
31
28
112
30+
117
37
313
Indigenous
52
31
170
Non-Indigenous
115
30
385
Total
165
31
536
Indigenous status
hep.org.au | Hep Review 39
n Develop a national strategy for bloodborne viruses and sexually transmissible infections in prisons. The strategy should accompany and support existing strategies and be developed, implemented, reviewed and assessed in the same way. n The Australian Government should raise the issue of hep C in prisons and the establishment of national standards of prison health delivery as part of the Council of Australian Governments Health Council processes.
injected drugs and two-thirds of women who injected drugs tested positive, compared with 4% of males and 6% of females who did not use injecting drugs. This association holds over time, with the prevalence of hepatitis C increasing with the length of time a person who injects drugs has been injecting. Among those who have been injecting for at least three years, 75% of daily injectors tested positive to hepatitis C.
At the time of publication the Australian Government had not responded to the Inquiry’s report.
Hepatitis B is the world’s most common liver infection, affecting an estimated 225,000 people in Australia, although many of those may not know they have the infection. While a vaccination exists, prisoners are recognised in the Second National Hepatitis B Strategy as being at increased risk due to low vaccination rates.
Data on hep C prevalence within prisons came from the 2013 National Prison Entrants’ Bloodborne Virus & Risk Behaviour Survey which screened 536 prison entrants for the hep C antibody. Overall, just under one-third of entrants tested positive for hep C (table 1, page 39). This was more common among women than men, with no difference by Indigenous status. Generally, prevalence increased with age, from 12% of those aged 20–24 years to 37% of those entrants aged 30 years or older. This is consistent with the association between hepatitis C and injecting drug use and number of years of injecting. In 2013 there was a spike for the youngest entrants, with almost one-quarter of those aged less than 20 testing positive for hepatitis C. This was not seen in previous years and it is not clear whether this reflects an actual increase in hepatitis C among the youngest entrants or if it is due to the relatively low number of entrants in this age group who were tested. Among both men and women, people who inject drugs were more likely than those who did not inject drugs to test positive to hep C. More than one-half of men who
HEPATITIS B
Data on hepatitis B prevalence were obtained from the 2013 National Prison Entrants’ Bloodborne Virus & Risk Behaviour Survey, which tested 456 prison entrants for the hepatitis B antibody. Overall, 18% of entrants tested positive (table 2, below). Men were slightly more likely than women to test positive. The likelihood of testing positive increased as age increased, from 3% of the youngest entrants aged under 20, to almost one-quarter (24%) of the oldest entrants. One-quarter of Aboriginal and Torres Strait entrants tested positive, compared with 15% of non-Indigenous entrants. Among men and women, people who injected drugs were only slightly more likely than those who did not to test positive to hepatitis B. For men, 20% of IDU and 17% of non-IDU tested positive, and among women, the rates were 13% and 11% respectively.5
Table 2: Prison entrants who tested positive for hepatitis B, 2013 Tested positive for Hep B antibody
%
Total prison entrants tested
75
18
407
7
15
48
Sex Male Female Age group under20
1
3
35
20–24
4
5
81
25–29
16
18
88
30+
61
24
251
Indigenous
35
25
142
Non-Indigenous
47
15
308
Total
82
18
456
Indigenous status
40 Hep Review #90 | Nov-Feb 2016
DRUG USE IN PRISON NEEDLE SHARING
Sharing needles and syringes carries the risk of acquiring blood-borne diseases. Community needle and syringe exchange programs (NSPs) have long been shown to be a cost-effective way to reduce infections such as hep C. In some countries, NSPs are being extended to prisons where they have decreased needle sharing practices and bloodborne virus transmissions, with no evidence of major negative consequences. While there are currently no NSPs operating in Australian prisons, the Australian Capital Territory Government announced in April 2015 that a trial of a prison-based NSP would be conducted, subject to the support of the majority of prison staff. The trial has yet to be enacted. An Inquiry of the Standing Committee on Health into Hepatitis C in Australia, conducted during 2014–15, included an investigation of NSPs in prisons. They noted the developments in the ACT and that the outcome of the trial would inform the broader debate on prison-based NSPs in Australia. Data from the National Prison Entrants’ Bloodborne Virus and Risk Behaviour Survey in 2013 found that, of people entering prison who reported injecting drugs, 90% said they used sterile injecting equipment all or most of the time in the previous month. Re-using someone else’s used needle and syringe was reported by 18% of entrants, slightly down from 20% in 2010.
Hepatitis NSW PHOTOCALL PROJECT
DISCHARGEES
Four per cent of dischargees reported using a needle and syringe that had been used by someone else while they were in prison. A further 11% did not know if equipment they used had been used by someone else. This excludes NSW which did not provide dischargee data, and Victoria which did not collect data for this indicator. Also, the data is self-reported and is likely to be an underestimate as prisoners can be reluctant to disclose this kind of information.
Download full report: bit.ly/1nyHleL
Help us to share your stories and/or photos with your communities. Email us at hepreview@hep.org.au for more information.
Images by Exposition by RAF
More than one-quarter of dischargees reported having injected drugs prior to being in prison, and 16% of all dischargees reported accessing needle and syringe exchange programs in the community. Of those dischargees who injected drugs prior to prison, more than one-third accessed a needle and syringe exchange program in the community. Of the 12 dischargees who reported sharing equipment in prison, five had accessed exchange programs in the community, and seven had not. This excludes NSW which did not provide dischargee data.
Your photos, your stories
hep.org.au | Hep Review 41
a crisis in mongolia S
ince the arrival of the Year of the Water Snake, Dashnyam, the eldest of three children of an ordinary working family in Mongolia, has faced anxious thoughts on one topic: how to keep her father alive. A former military man turned miner, 57-year-old Oyunsukh’s liver disease progressed rapidly. He developed a sack-like belly during Lunar New Year celebrations in 2013 and was diagnosed with ascites (excess fluid causing abdominal swelling) and a high hepatitis C viral load. In April doctors told Oyunsukh he had cirrhosis.1 In October he was diagnosed with liver cancer. “We took our dad to South Korea in November, hoping that we could arrange a liver transplant for him there,” says 30-year-old Dashnyam, a kindergarten teacher. “However, we could not cover the costs of this surgery and spent all the money we had on having dad’s blood vessels that were feeding the four tumors in his liver tied up and the treatment that followed.”
42 Hep Review #90 | Nov-Feb 2016
The family understood that without a liver transplant they may lose their father to liver cancer. Mongolia has the highest rate of liver cancer in the world: prevalence in Mongolian men is eight times higher and in women 16 times higher than the global average. By the next year, the Year of the Blue Horse, Oyunsukh had developed three more tumors in his liver. Dashnyam and her siblings researched liver transplantation extensively. The family collected its savings – profits from selling underwear and socks at Ulaanbaatar’s largest open-air market.
“
There is rarely a family in Mongolia which does not have somebody infected with hepatitis B or hepatitis C.”
Surgery in India was considered, but fell beyond the family's means at a cost of US$50,000. The cost elsewhere was even more prohibitive – in the Republic of Korea for example the surgery cost US$300,000. “We had no choice but to consider having the surgery performed here, in Mongolia,” says Dashnyam. However, she was told to call back in four months to get her father’s name on the waiting list. “In Mongolia a liver transplant costs 65 million Mongolian Tugrik/MGT (US$35,000). But we’re not even on the waiting list,” says Dashnyam whose two younger siblings are willing to donate parts of their own livers to their father. “I’m willing too,” says Dashnyam. “But I cannot. The doctors said I am overweight so my liver isn’t suitable”. Oyunsukh, does not want any surgery. “It’s too risky for my children and too costly – I do not want them to sacrifice everything for me. They need to raise their own children and live well themselves.”
HEPATITIS – THE “NUMBER 2 KILLER IN THE NATION” “Hepatitis B and C are the number two killer of our people, after heart and coronary diseases,” says hepatologist Jazag Amarsanaa, the member of the capital city parliament and the owner of the leading private hepatitis clinic and laboratory in Mongolia: “We lose far
too many of our people to liver cancer and cirrhosis. It’s a real threat.” Indeed, according to a 2003–05 prevalence survey hepatitis C had affected 10–15% of Mongolia’s population. By 2011, 10–22% of Mongolians were affected by hepatitis B. “There is rarely a family in Mongolia which does not have somebody infected with hepatitis B or hepatitis C,” says Oidov Baatarkhuu, President of the Mongolian Association on Study of Liver Diseases (MASLD). A number of studies indicate that the peak of viral hepatitis transmission was in the 1970s and 1980s before disposable syringes were available in Mongolia. Poor infection control, re-use of syringes in health settings and administering injections at home led to the rapid spread of viral hepatitis. Currently hepatitis B is significantly high among people from 19–40 years of age and hepatitis C is spread among people from 19–65 years of age.2 “People in the sexually active age group are still at high risk of contracting hepatitis B whereas there is no clear age distinction in
Continued next page...
Former liver cancer patient Altantuya, 51, is desperately searching for hepatitis B treatment for her son Bayasgalan, 26, as well as his brother who has hepatitis C. The family cannot afford hepatitis tests and treatment, and are resorting to herbal remedies such as boar's liver and camel hair broth.
hep.org.au | Hep Review 43
HEPATITIS IN MONGOLIA n Reporting of hepatitis (as jaundice) commenced in Mongolia in 1952. n The first hepatitis B antigen test became available in 1977. n In 2004 hepatitis B incidence was 3 cases per 10,000 people. According to a 2013 study hepatitis B incidence has now fallen to 2 cases per 10,000 people. n Five years ago hepatitis A incidence was 25 cases per 10,000 people. Since the introduction of hepatitis A vaccine in 2012, hepatitis A incidence has fallen to 6 cases per 10,000 people. n Alcohol is one of the key factors contributing to cirrhosis and liver cancer. Alcohol is consumed by 50% of Mongolia’s population. Almost 11% of people consume alcohol at harmful levels. n Viral hepatitis infection is associated with the development of liver cancer. Among patients with liver cancer in Mongolia, 46% have hepatitis C, 34% have hepatitis B and 14% have co-infection with more than one hepatitis virus. n The hepatitis B immunoglobulin (HBIG) for assisting the prevention of mother-to-child transmission of hepatitis B at birth is not registered and therefore not available in Mongolia.
the hepatitis C spread although a higher number of hep C cases are found in people older than 40. This means that there are common risk factors present for all adults,” explains Dorj Narangerel, senior officer in charge of communicable diseases control at the Ministry of Health and Sports (MOHS). A 2013 national study on hepatitis prevalence and risk factors, found hemodialysis or dental treatment patients are five times more likely to contract hepatitis B than people who have not had such procedures. Patients undergoing a surgical procedure or receiving blood products in a hospital are twice as likely to contract hepatitis C.3 Oyunsukh says he must have contracted the virus in a private dental clinic when having a root canal treatment. “There was a lot of blood,” he recalls.
SILENT EPIDEMIC The introduction of hepatitis B vaccine in 1991 for the child immunisation schedule in Mongolia as well as the usage of disposable syringes since the 1990s was a huge breakthrough in fighting transmission. “Children born in the 1990s who now are young men and women in their 20s as well as the younger generation do not have to fear hepatitis B anymore,” says Dr Soe Nyunt U, WHO Representative in Mongolia. The National Strategy on Fighting Viral Hepatitis 2010–2015 has a goal of reducing new hepatitis cases registered each year to 10 cases per 10,000 people. By 2013 this number had fallen to 9 cases per 10 000 due to the successful hepatitis B immunisation program, a reduction in new hepatitis C infections and the introduction of the hepatitis A vaccine in 2012. Despite the slight drop in numbers of new viral hepatitis cases in Mongolia, statistics reveal that every year around 600 cases of hepatitis B and 140 cases of hepatitis C are registered. “If hepatitis B infection is contained due to vaccinating children, the trend for hepatitis C has remained the same in the last ten years,” says Dr Narangerel. “It’s a silent disease and when there are no serious symptoms initially people do not refer to hospitals. Often one learns about having a hepatitis C or hepatitis B infection only by chance.” In the last five years Mongolia has budgeted about 135 million MNT for viral hepatitis treatment. According to the National Centre for Communicable Diseases (NCCD) this amount is sufficient only for treating 6 to 8 patients for hepatitis C. There have been 30 chronic hepatitis B and hepatitis C patients treated in the public sector health-care system, all at the NCCD. The remaining 300,000 chronic hepatitis B and hepatitis C patients go without treatment.
44 44 H Hep ep R Review eview #90 #90 || Nov-Feb Nov-Feb 2016 2016
“
There have been 30 chronic hepatitis B and hepatitis C patients treated in the public sector health-care system... the remaining 300,000 chronic hepatitis B and hepatitis C patients go without treatment.”
MONEY OR LIFE? Dr Lunkhuu Altantsetseg is a manager of the private Happy Veritas clinic popular among patients with hepatitis. The clinic's day rate, including food, a bed and basic treatment, costs from 35,000–50,000 MNT (US$19-27). “However the key medications–pegylated interferon and ribavirin–must be provided by the patients themselves. They spend 300,000–400,000 MNT (US$162–217) per week on one injection of interferon,” says Altantsetseg. Many patients and their families sell property and incur debts to pay for these services. It’s not much different for Doljinsuren Altantuya who is unemployed. She was diagnosed with cancer and her two sons have hepatitis B and C. They receive a monthly disability benefit totaling US$ 244. Altantuya brought her son, who has ascites as a result of hepatitis B infection, to the Happy Veritas clinic for treatment: “It cost us over 2 million MNT (US $1000) to spend 10 days in this clinic including all the extra medications we needed to provide ourselves,” says Altantuya. The family of six adults and two young children lives on 1.5 million MNT (US $800) including the pension and Altantuya's husband's wages as a truck driver. To have her son treated at the clinic Altantuya left all her golden jewelry in a pawn shop. “I am worried for my husband and daughter – they must take a hepatitis test but we simply cannot afford it,” she says. At the public NCCD one hepatitis B or hepatitis C DNA or RNA confirmation test costs from 150,000–180,000 MNT (US $82-98). Experts agree that testing of those at risk is the first step in fighting viral hepatitis, yet testing remains unaffordable for many. The Mongolian rural and district clinics do not have sufficient laboratory capacity to detect infection or do viral load testing. Unable to afford expensive treatment Altantuya uses traditional remedies: eating raw wild boar’s liver that costs 150,000 MNT (US$82) for a four-month supply; and drinking a broth of rutting camel hair sold in match boxes worth 20,000 MNT (US$ 11). “It’s a much more affordable and efficient treatment,” says Altantuya.
MORE AFFORDABLE TREATMENT News that a new hepatitis C treatment will be available and affordable through tiered-pricing strategies has stirred public attention. The hepatitis C anti-viral drug, the sofosbuvir of Gilead Sciences, has just been registered in Mongolia but has not entered the market yet. The large pharmaceutical company has listed Mongolia as one of 91 countries eligible for lower cost medications through tiered pricing. Public health experts note that while the tiered pricing strategy is welcome, making long-term commitments is undesirable when market forces may drive prices further down. More companies are coming
up with effective combination treatment formulas. This will reduce prices and improve the quality and variety of effective combination drugs,” says WHO’s Dr Soe. While the drugs are being registered the MOHS is working on issuing a WHO Advisory on hepatitis C diagnostics and treatment guidance to doctors and medical practitioners. On a larger scale the MOHS is working towards submitting a newly devised National Programme on Combating Viral Hepatitis to the government. A new comprehensive program is being developed that highlights prevention, diagnostics and treatment of viral hepatitis as well as purchase of necessary equipment and medical supplies. However, there is no commitment by the government to cover treatment costs. Meanwhile, Dashnyam stresses the importance of educating children and parents about viral hepatitis and teaching them how to protect themselves from this deadly disease. Unable to afford treatment abroad, and waiting months to get onto a waiting list for liver transplant surgery, the young woman seems to have left everything now to fate.
FOOTNOTES 1 Cirrhosis is scarring of liver tissue so substantial that normal liver function is lost. Typically, this results in a swollen belly and legs, blood clotting problems and the risk of serious infections. Cirrhosis linked to hepatitis C can lead to liver cancer. Bekhbold Dashtseren, Bayarmagnai Bold, Naranjargal Dashdorj, Dawghadorj Yagaanbuyant, Department of Infecious Disease, HSUM, Onom Foundation “Epidemiological Study of Prevalence and Risk Factors for Viral Hepatitis among Apparently Healthy Mongolians”. 2
Bekhbold Dashtseren, Bayarmagnai Bold, Naranjargal Dashdorj, Dawghadorj Yagaanbuyant, Department of Infecious Disease, HSUM, Onom Foundation “Epidemiological Study of Prevalence and Risk Factors for Viral Hepatitis among Apparently Healthy Mongolians”. 3
This aricle was originally published on the World Health Organisation (WHO) Western Pacific Region website: www.wpro.who.int Read in full: bit.ly/1OLufac
hep.org.au | Hep Review 45
Berry Good Smoothie Serves: 1 1 cup berries (raspberries, strawberries, or blueberries) + ¼ cup pomegranate juice + ¼ cup water + half of a banana + 1 cup ice On-the-go smoothies are often loaded with sugar and calories. But this version saves you about 140 calories, plus it’s loaded with antioxidants. Just combine the ingredients in a blender, and process until smooth.
Vegetable lasagne Preparation time: 20 minutes Cooking time: 30 minutes + 10 minutes to stand Serves: 6 Storage: Covered in the fridge or freezer (loses some of its texture when reheated)
INGREDIENTS • • • • • • • • • •
1 small eggplant or 2 thin eggplants, cut into ½cm slices 1 bunch of silver beet 250g reduced-fat ricotta cheese 1 1/2 cups tomato sauce/passata 1 handful fresh basil, roughly chopped 4 lasagne sheets 1 1/2 cups grated reduced-fat mozzarella cheese 2 tablespoons reduced-fat parmesan cheese Olive or canola oil spray Pepper to season
METHOD 1. 2. 3. 4.
Preheat the oven to 200°C(180°C fan-forced) Line a baking tray with foil and spray with oil Lay the eggplant on top and spray the eggplant with oil Bake for 10 minutes, turning once, until eggplant is soft and slightly browned 5. Cut the stalks off the silver beet, roughly chop the leaves, place in a colander and rinse well 6. Pour a jug of boiling water over the silver beet to wilt it 7. Once cool enough to touch, remove any thick stalks and squeeze the water out of the leaves 8. In a bowl, mix the basil and tomato sauce 9. Line a casserole/lasagne dish with 1 to 2 sheets of lasagne 10. Lay half the eggplant over the lasagne sheets, spread with half the ricotta cheese, then place half the silver beet on top 11. Drizzle with half the tomato-basil mixture, sprinkle with a third of the cheese, 1 tablespoon of parmesan and season with pepper 12. Place another layer of lasagne on top, then repeat the layering process 13. Finish with lasagne and a sprinkling of the remaining mozzarella 14. Place in the oven for 30 minutes, or until cheese is melted and slightly browned 15. Stand for 10 minutes before serving with a side salad
46 Hep Review #90 | Nov-Feb 2016
Pumpkin, Carrot And Potato Soup Serves: 6
Salmon with walnut and herb crust Serves: 4-6 (depending on size of fish fillet)
INGREDIENTS
INGREDIENTS
• 1 small butternut pumpkin, peeled and diced (ripe, not fibrous – buy 2 cut halves so you can see the pumpkin) • 1 large carrot, peeled and diced • 1 large potato, peeled and diced • 1 large onion, chopped • 2 large garlic cloves, sliced • 1 litre of salt-reduced chicken stock • 1 Massel vegetable stock cube dissolved in 1 tablespoon of hot water • 1 teaspoon curry paste (or powder) • Black pepper to taste • 2 tablespoons light cream (optional) • 1 tablespoon olive oil
• 1 large salmon fillet (approx 750 g to 1 kg) brushed with olive oil • 1 tablespoon olive oil (extra) • 1/2 cup continental parsley, chopped • 1/4 cup dill, chopped • 1 clove garlic, crushed • 1/2 cup walnuts, chopped and lightly dry roasted • 1 tablespoon lemon juice • Extra lemon wedges for serving
METHOD 1. In a large pan, gently fry the onion in olive oil, add the sliced garlic cloves and cook until soft 2. Add the curry paste or powder and cook for one minute 3. Add all the prepared vegetables and the chicken stock, then bring to the boil 4. Lower the heat, cover with the pan lid and simmer gently until the vegetables are tender 5. Blend the soup and season with black pepper 6. Add the cream (optional)
METHOD 1. Preheat the oven to 200°C (180°C fan-forced) 2. Line a baking dish with baking paper, place the oiled salmon into the dish and bake for 5 minutes 3. Meanwhile, combine all the crust ingredients in a medium-sized bowl 4. Remove the salmon from the oven and spread with ¾ of the crust mix 5. Place the salmon back in the oven for a further 5 to 10 minutes (depending on whether you prefer it a little rare or cooked through) 6. Carefully cut the fillet into 4 to 6 pieces and place on a serving plate sprinkled with the remaining crust mix 7. Serve with the extra lemon wedges, new potatoes and a tossed salad
Recipies sourced from LoveYourLiver.com.au hep.org.au | Hep Review 47
Green Smoothie Serves: 1 2 oranges, peeled 1/2 rib celery 1 lemon, peeled 1/2 cup dandelion greens (or other bitter green) 1/2 cup parsley Place all ingredients in a blender and blend until smooth. Enjoy!
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 the chicken and stir until browned. 3. Add the rice and stir for 5 minutes, until rice has changed 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 the 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 48 Hep Review #90 | Nov-Feb 2016
Homemade Hummus
Healthy fruit cake Preparation time: 20 minutes + soaking overnight Cooking time: 70 to 85 minutes Makes: 12 slices Storage: Covered in the fridge. Double wrap in plastic to freeze.
INGREDIENTS • • • • • • • • • • • • • •
1 1/2 cups sultanas 1/2 cup raisins 2 tablespoons brandy (optional) 1 tablespoon water (or 3 tbsps of water or fruit juice if not using brandy) 2 cups raw pumpkin cut into 1cm cubes 2 eggs, beaten 1/2 cup apple juice 1/2 cup skimmed milk 1/2 cup pecans or walnuts, chopped 1 teaspoon ground cinnamon 1 teaspoon mixed spice 1 cup white self-raising flour 1 cup wholemeal self-raising flour 1/2 teaspoon bicarbonate of soda
Serves: 4 1 large tin chickpeas, drained and rinsed 1-2 tablespoons tahini paste 2 garlic cloves Juice of half a lemon (or more if you like more bite) Blend all the ingredients, taste and add more lemon juice if required Add a little water if mixture is too thick Serve as a dip with toasted pita bread or vegetable crudités.
METHOD 1. Put the sultanas, raisins, brandy and water in a bowl and soak overnight 2. Preheat the oven to 200°C(180°C fan-forced) 3. Line the bottom of a 20cm cake tin with foil and spray the foil and sides of the tin with oil 4. Put the small cubes of pumpkin into a microwave-safe dish, cover and cook on high for 8 - 10 minutes, or until well done 5. Place the cooked pumpkin in a food processor, blend until smooth and set aside to cool (you will need 1 cup of pumpkin puree - if you have any left over, add it to mashed potato or soup to use it up) 6. Mix the pumpkin puree, eggs, apple juice and milk together in a large bowl 7. Add the soaked fruit, nuts and spices 8. Sift the flours and bicarbonate of soda into the mixture and combine 9. Spoon the mixture into the prepared tin and bake for 10 minutes at 200°C 10. After 10 minutes, turn the heat down to 180°C (160°C fan-forced) and bake for a further 1 to 1 1/4 hours, until browned 11. Test by inserting a skewer; if it comes out clean turn the cake out onto a rack to cool.
hep.org.au | Hep Review 49
NSW STATE WIDE TRAINING
BOOSTING SKIL BOOSTI & CONFIDEN O
ver two days in October last year, Going Viral NSW rolled out the inaugural State-Wide Training. All of the five local health districts (LHD) involved contribute funds so we could deliver the Going Viral experience to a state wide organisation. This one was attended by Justice Health and Juvenile Justice with staff flying in from across the state to spend two nights in Sydney for the biggest Going Viral training we’ve ever had. There were 22 participants in total with nine from Justice Health and 13 from Juvenile Justice. They came from Juvenile Correctional Centres across the State including the Central Coast, Grafton, Wagga Wagga, Dubbo and Metropolitan Sydney. They were predominantly Youth Officers, Counsellors, Educators and Clinical Nurse Consultants and were specifically engaged because their roles mean they are ideally placed to deliver hep C education and prevention messages directly to young people in juvenile correction centres. The vast majority work with both Aboriginal and Torres Strait Islander young people and young people from remote or rural NSW. A large percentage also work with young people who inject drugs. We were very excited that the attendees are all in regular contact with the priority populations who Going Viral NSW seeks to access in a meaningful way. As with all Going Viral training, we sent the participants a pre-training survey to complete. The results we received highlighted the common misconceptions we see, with 65% incorrectly believing saliva and sexual fluid can spread the hep C virus and that sharing cutlery and not using condoms were transmission risks. However 100% did accurately identify that the virus is spread via blood and that sharing injecting equipment is a risk. While only 7% believed there was a vaccine, half of the participants did
50 Hep Review #90 | Nov-Feb 2016
not know there was currently a treatment for hepatitis C. Four out of five rated their competence when talking about hep C with their clients as poor or average and a similar number rated their skills to manage hep C related issues at work as similarly poor. Overall what we saw was a genuine interest in hepatitis prevention and related services as well as an understanding of the relevance it has with their work and the young people they work with but a lack of knowledge and, consequently, a lack of confidence in broaching this topic with young people. In short, perfect candidates for Going Viral NSW. The participants were wonderfully engaged throughout both days and threw themselves into everything that was asked of them. Helping the participants understand what it is like for a young person to navigate this landscape is a big part of the training and the Stigma and Discrimination Activity on the first day is integral to this. As a means of exploring belief systems and how they can differ greatly between young people and the adults working with them, the participants were asked to think of a client they had worked with quite extensively and then take on their persona. Organised chaos ensued with 22 participants now acting as adolescents who have all engaged with the Juvenile Justice system in one way or another. The commitment to the activity shown by the participants was amazing and they were able to get a lot
Going Viral is a program run across NSW to increase knowledge of, and access to, Needle and Syringe Programs (NSPs) and hepatitis C prevention among young people who are new injectors or at risk of injecting and/or contracting hepatitis C.
LLS NCE “ out of the exercise. The main learning being that to work effectively with young people it is important to discover what their views and beliefs are about the issues being addressed and to not assume that they think the same as the worker. Continuing the theme of ‘a day in the life’ everyone participated in The Amazing Race on the second day (see issue #89 of Hep Review for details on the race). It was the biggest endeavour of this kind so far with 22 participants, four vans used and 20 plus services visited. Overall the race was well received with everyone agreeing via feedback forms that involvement in The Amazing Race improved their understanding of the barriers a young person faces in accessing needle and syringe programs (NSPs). All but one agreed that The Amazing Race improved their confidence in providing information to a young person about where and how to access NSPs and related services. One participant beautifully captured the purpose of the activity in their feedback form: “It brought home how hard it is and confronting to go to an NSP the first time and imagining how much harder that would be for a young person.” Overall the Going Viral NSW State Wide Training appears to have been a great success with the feedback from participants overwhelmingly positive across all aspects
I just can't praise you and your fellow facilitators enough. Very, very well done! An understatement to say I found it an educational, eye opening, mind opening experience along the way while being extremely enjoyable. I look forward to being involved in the next stage, learning the skills to inform others on hepatitis facts which will be beneficial knowledge in my work place, for both the young people and fellow staff.” Training Participant
of the training including an increase in their confidence levels when engaging with young people about hepatitis prevention and related services. As is always the case with Going Viral NSW, we now move onto the third stage where we support the organisations in implementing a hepatitis C prevention project of their own. For Juvenile Justice this will be further training for staff and young people and for Justice Health this will be further training in addition to the development of a youth specific resource. According to the emails participants sent after the training had wrapped, they are very excited about working their newly developed Hepatitis C education muscles and getting the information where it most needs to be, with young people most at risk of being exposed to hepatitis C transmission.
hep.org.au | Hep Review 51
HORRORSCOPE* Aries (March 21 - April 19)
Leo (July 23 - August 22)
Sagittarius (November 22 - Dec 21)
Taurus (April 20 - May 20)
Virgo (August 23 - September 22)
Capricorn (December 22 - Jan 19)
Gemini (May 21 - June 20)
Libra (September 23 - October 22)
Aquarius (January 20 - Feb 18)
Cancer (June 21 - July 22)
Scorpio (October 23 - Nov 21)
Pisces (February 19 - March 20)
Relationships are in focus right now but that doesn’t mean you don’t have to put in some work. A relationship is like any ship, you have to swab the decks, maintain the bilge pump and check for leaks. Most important of all, keep an eye out for emotional icebergs; you might think you’re unsinkable but so did the Titanic and look how well that turned out for them.
You have plenty of energy for bringing more excitement to your life. Of course excitement is a relative term; for some it means trying a new variety of blue cheese, for others it is jumping out of plane with a live lobster in their pants. The task before you Taurus is to use your energy wisely and to realise when enough is truly enough.
There is quite a bit of animation and imagination in your life and it’s important to make it work for you, not against. Examples of “for”: imagining a run along the beach then going for a run along the beach; imagining a great meal then cooking and eating a great meal. Example of “against”: imagining you can fly like a superhero and then leaping off a rooftop. That ain’t ever going work.
It’s a great time for creative writing, if you’ve ever wanted to write your best-selling Great Australian Novel™ now is the time to get to it. Beware though: procrastination is the enemy of any writer, nagging you to waste copious amounts of time so as to avoid the blank page staring back at you. Sometimes it’s easier to limit your creative writing to your Tinder profile.
You may be motivated to take action that helps boost your feelings of security. Motivation can come in many forms, Leo; while you may rule the jungle with an iron paw there are many jealous baboons out there who would gladly dethrone you given half the chance. So you have to ask yourself, not how insecure do you feel but how insecure should you feel?
You are turning heads and making things happen, but possibly not in a good way. “Turning heads” may mean you forgot to wear your pants today and, as a result, “making things happen” indicates an encounter with law enforcement officials - all of whom will be wearing their pants (except, of course, if they’re also Virgos).
It’s an important time for considering whether some projects and attitudes have outgrown their value. Like all good Librans you need to carefully weigh up all the pros and the cons of each aspect. Add a bit to the pro side, and then maybe take some away from the con side... keep doing this until you can safely say that, on balance, nothing needs to change after all.
This is a time for feeling more in control of everything; just make sure this doesn’t cause you to flip out the other side and become a total control freak, Scorpio. Sometimes you need to have the serenity to accept the things you cannot change, the courage to change the things you can, and the wisdom to know when to ruthlessly crush all dissent.
The year gets off to a great start with your life-path goals in focus. Unless that is you got totally arse faced on New Year’s Eve and everything is a terrible, head pounding blur. Of course that could mean instead that you groggily stumble down someone else’s life-path by accident and end up with their hot car and their awesome house plus their souldestroying debt and mortgage.
If you play your cards right, this can be a time for coming to an important work-play balance. However, to continue the card analogy, the stakes can be high. You may think that you have a winning hand but next thing you know, your boss has a quadruple royal flush and you’re doing overtime for a month. Lesson: the boss holds most of the cards.
It’s a prudent time for reminding yourself of long-term plans as well as the rules of the road. This is merely a metaphor of course; if, for example, your long-term plans are to become a world renowned concert pianist, then knowing how to indicate a left hand turn at an intersection isn’t going to help you much whilst banging out Beethoven’s Fifth on a Viennese stage.
Opportunities to impress can figure in a big way right now. While not everyone will be impressed by your encyclopaedic knowledge of Star Wars, cosplay endeavours, stamp/ comic/plushy collection and/or other nerdy pursuits, someone out there surely will be. However, if that “someone” is your pet goldfish you are setting the bar way too low, Pisces.
*please note that these horrorscopes are like election promises: neither real nor accurate.
52 Hep Review #90 | Nov-Feb 2016
CROSSWORD Find solutions at hep.org.au/news-stand
ACROSS 1. Winner; our e-newsletter The ........ (8) 7. Presses clothes (5) 8. Send off a rocket! (6) 9. Spooky (5) 11. A gathering for a group chinwag (7) 13. Weep (3) 15. Confined (5) 17. Regarding (2) 18. A watch tells you this (4) 20. Month (8) 22. Red Beard, Black Beard (6) 23. Once ruled by Pharoahs (5) 25. More pleasant! (5) 26. Mattress pest (6) DOWN 1. Mishap; ........ Jane (8) 2. Entertain (5) 3. Outdoor packed meal (6) 4. A river in 23 across (4) 5. Revitalising substance (5) 6. Donkey (3) 9. Laid by a chook (3) 10. To do this is only human! (3) 12. Title (4) 14. 2015 was one. So was 1999. (4) 16. Vandalised (7) 19. Modern measuring system (6) 20. Discourage (5) 21. Telepathy (abbrev.) (3) 22. A play on words! (3) 24. Label attached for identification (3)
hep.org.au | Hep Review 53
CLINIC LISTINGS C - Hep C treatment & monitoring B - Hep B treatment & monitoring F - Fibroscan
MONITOR MANAGE TREAT
CLINIC HIGHLIGHT
CLINIC
CONTACT
The Albion Centre, Surry Hills
02 9332 9600
Bathurst Liver Clinic, Bathurst Hospital
02 6330 5346 523 838
Bega District Hospital Interferon Treatment Unit
02 6492 3255
0407
SERVICES C
B
F*
C
B
F
C
B
F
*Fridays only
HEPATITIS INFOLINE 1800 803 990 INFO, SUPPORT, REFERRALS
Hunter New England Local Health District Liver Clinics
Treatment through Bankstown B F Hospital Outpatients Clinic
Burwood Endoscopy Centre
02 9745 3988 endoscopy@iinet.net.au
C
02 4921 3478
Canberra Gastroenterology Hepatology Unit
02 6244 2195
C
B
F
HNE Liver Clinics provide culturally appropriate and friendly services.
Canterbury Hospital – Outpatients Liver Clinic
02 9767 6372 legan@med.usyd.edu.au
C
B
F
They provide education and information on viral hepatitis and access to hepatitis treatment.
Coffs Harbour Health Campus – Clinic C
02 6656 7865
C
B
F
Coffs Harbour Sexual Health Clinic 916
02 6656 7865
C
B
F
Concord Hospital Liver Clinic
02 9767 8310 melissa.kermeen@sswahs.nsw.gov.au
C
B
F
Central Coast Hepatitis C Clinic
02 4320 2390 helen.blacklaws@health.nsw.gov.au
C
B
Centre for Addiction Medicine, Westmead
02 9840 3462
C
B
F
Clinic 16, Royal North Shore Hospital
02 9462 9500
C
B
F
Clinic 33, Port Macquarie Community Health Centre
02 6588 2750 hdc@midcoast.com.au
C
B
Eastern Suburbs Endoscopy Centre, Bondi Junction
02 9387 6600 paullgoodman@gmail.com
They also provide information and support to patients preparing for treatment, supportive counselling during all stages of treatment, ongoing case management and health monitoring in relation to liver care.
Tell us about your clinic and why it’s great so we can highlight it in upcoming issues!
hepreview@hep.org.au
54 Hep Review #90 | Nov-Feb 2016
C
B
F*
*two days/month
F*
*one day/month
F
CLINIC LISTINGS C - Hep C treatment & monitoring B - Hep B treatment & monitoring F - Fibroscan
MONITOR MANAGE TREAT
I MY
CLINIC
CONTACT
SERVICES
Excel Endoscopy Centre, Campsie
02 9718 0041 excelendocentre@gmail.com
C
B
Gosford Hospital – Endoscopy Unit
02 4320 2111
C
B
Goulburn Community Health Centre
02 4827 3913
C
B
F
Holdsworth House Medical Practice, Byron Bay/Sydney
02 6680 7211 (Byron) 02 9331 7228 (Sydney)
C
B
F*
John Hunter Hospital - Viral Hepatitis Service Newcastle
02 49214789 tracey.jones@hnehealth.nsw.gov.au
C
B
F
Kempsey Liver Clinic
02 65882750
C
B
F
Kirketon Road Centre (KRC) Kings Cross
02 9360 2766 phillip.read@sesiahs.health.nsw.gov.au
C
B*
Lidcombe Hospital Outpatients Liver Clinic
02 9722 8400
C
B
F
Lismore Liver Clinic
02 6620 7539 mark.fuller@ncahs.health.nsw.gov.au
C
B
F
Liverpool Hospital Department of Gastro & Hepatology
02 8738 4074 miriam.levy@sswahs.nsw.gov.au
C
B
F
F
F*
*one day/month
*fortnightly /Wed-Fri/Sydney
F
*one clinic/month
HEPATITIS INFOLINE 1800 803 990 INFO, SUPPORT, REFERRALS Narooma Community Health Centre
02 4476 2344
C
B
F
Nepean Hospital Outpatients
02 4734 3466 vincenzo.frageomeli@health.nsw.gov.au
C
B
F
Nepean Private Specialists Centre
02 4722 5550
C
B
F
Northern Rivers Gastroenterology, Lismore
02 6622 0388 nrgstaff@tpg.com.au
C
B
F
hep.org.au | Hep Review 55
CLINIC LISTINGS C - Hep C treatment & monitoring B - Hep B treatment & monitoring F - Fibroscan
MONITOR MANAGE TREAT
I MY
CLINIC
CONTACT
SERVICES
Clinic 96, Kite St Community Centre, Orange
02 6392 8600 debra.goodacre@health.nsw.gov.au
C
B
F
Orange Base Hospital
02 6369 3000
C
B
F
Prince Of Wales Hospital Liver Unit
02 9382 3100 cherie.raby@sesiahs.health.nsw.gov.au
C
B
F
Port Macquarie Liver Clinic
02 6588 2750
C
B
F
Royal Prince Alfred Hospital AW Morrow Liver Clinic
02 9515 7049
C
B
F
St George Hospital – Hepatology & Liver Clinic
02 9113 3111 Lisa.Dowdell@sesiahs.health.nsw.gov.au
C
B
F
St Vincents Specialist Medical Centre, Lismore
02 6622 0388 nrgstaff@tpg.com.au
C
B
F
St Vincents Hospital – Viral Hepatitis Clinic
02 8382 3707 viralhepatitis@stvincents.com.au
C
B
F
Shoalhaven Hospital Hepatology Clinic
0477 399 445
C
B
F
In prison and want to get treated for hep C? You need to make an appointment to see the Justice Health nurse at your Centre and tell them that you would like to be treated for hep C. It may take some time – they will do some preparation work to find out which treatment is best for you – after that you will join the waiting list for treatment.
You can find out more about treatment by calling the Hepatitis Infoline (dial number 3 on the common calls list) 1800 803 990. 56 Hep Review #90 | Nov-Feb 2016
CLINIC LISTINGS C - Hep C treatment & monitoring B - Hep B treatment & monitoring F - Fibroscan
MONITOR MANAGE TREAT Is your hepatitis clinic or treatment centre located in NSW but not listed here? Already listed but the info is out of date? Contact us with the details and we’ll add you to/ update our clinic directory! hepreview@hep.org.au
CLINIC
CONTACT
SERVICES
Sydney Clinic for Gastrointestinal Diseases
02 9369 3666
C
B
Wagga Wagga Hospital Hepatitis Treatment Unit
02 6921 2711
C
B* private F rooms
Westmead Childrens Hospital
02 9845 3989
C
B
F
Westmead Drug &Alcohol Services, North Parramatta
02 9840 3462
C
B
F
Westmead Gastroenterology Hepatology Department
02 9845 7705 jacob_george@wmi.usyd.edu.au
C
B
F
Wollongong Hospital Hepatology Unit
02 4222 5180
C
B
F
F *referred to
HEPATITIS INFOLINE 1800 803 990 INFO, SUPPORT, REFERRALS 76 Prince St Orange
02 6362 5055
C
B
F
hep.org.au | Hep Review 57
Let's Talk about:
Positive Psycho
I
n our previous issue of Hep Review we started looking at the concept of Positive Psychology – the science and the practical applications of this approach to well-being.
Using the diagram from Martin Seligman’s model – PERMA: theory of flourishing (see diagram opposite) – we started exploring separate components of the model and talked about the power of Positive Emotions. Let’s continue moving through this diagram and pay close attention to other integral parts of this model. Our next stops are Engagement/Flow and Relationships. Engagement, or ‘flow’ as it is often called, is a state of optimal experience and refers to the well-being we get from being totally absorbed in the task in hand, so much that we lose track of time and feel completely at one with what we are doing. Flow has been around as long as humanity, but it did not come to the attention of psychologists until the late 1960s. While researching creativity in artists, the Hungarian American psychologist Mihaly Csikszentmihalyi made what turned out to be the most important discovery of his life – most people he
58 58 H Hep ep R Review eview #90 #90 || Nov-Feb Nov-Feb 2016 2016
spoke with (artists, dancers, chess players, sports people, artisans and so on) described the same phenomenon as being totally immersed in their work with little attention to spare for anything else; many said it felt like being effortlessly moved forward by the flow of a river.
CHARACTERISTICS OF A FLOW/ ENGAGED EXPERIENCE How do I know that I am in “the flow”? n What I am doing is a challenge for me, but I feel able to meet it - pretty much any daily activity (including work!) can lead to a flow experience as long as it presents a challenge and we have about the right skill level to do it. n My goals are clear and I get immediate (or fast) feedback on how I am doing. n I feel completely absorbed by what I am doing.
logy by Lila Pesa, Hepatitis NSW
Positive Emotion
Accomplishments
Meaning/ Purpose
n I feel completely at one with what I am doing. n I feel in control and I am not concerned about failing. n I lose track of time - it feels like time passes much more quickly or more slowly than I’d expect. n I do not feel self-conscious. n What I am doing is intrinsically rewarding – I want to do it! There is no one activity of flow for all individuals. Finding flow depends on our subjective experience of challenge and interest.
HOW TO INCREASE FLOW? There are basically two routes to increase flow: n Discover where you have found flow in the past and present and prioritise these activities. n Create flow in activities that have not yet produced flow.
Engagement/ Flow
Relationships
FIVE TIPS TO HELP YOU GET MORE FLOW IN YOUR LIFE n Make sure the challenge is set at an appropriate level; the bar should be set neither too high nor too low. n Make sure that you have clear goals; having SMART goals (Specific, Measurable, Achievable, Results-focused and Time-bound) can help flow. n Get clear feedback as to whether you are achieving your goals; if possible, set up the activity so you can automatically gauge how you are doing. n Concentrate fully on the task; do one thing at a time and set your mind to doing it; the ability to concentrate may be helped / improved by meditation and yoga. n Choose a working environment where there are few or no distractions; find out the best way for yourself that helps you concentrate / focus.
Continued next page...
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Continued from previous page... Let’s look at our next segment of the diagram: Relationships. Relationships are included in this model because all evidence suggests that good caring and supportive interpersonal connections are essential to our well-being at any age or stage of life. The call is to explore how positive psychology toolkit can help to enhance and improve relationships.
WHAT POSITIVE PRINCIPLES MAKE INTIMATE RELATIONSHIPS FLOURISH? n Enhance your love maps: learn what is important for your partner. The best way to do it is quite simple ask them! Ask them what’s on their mind, about their hopes and dreams and try to listen and pay attention. n Nurture your fondness and admiration: research suggests that flourishing couples are able to focus on and appreciate their partner’s good points and gifts and tend to see their partner’s weaknesses as endearing foibles. If they make a mistake that is not characteristic, be sure to recognise that the problem is situational and temporary rather than a permanent trait. Focusing on their strengths and positive qualities can also be a good way to help you feel more appreciative. It is important that our appreciation and fondness is expressed as well as felt! n Turn towards each other instead of away from each other: prioritise time for each other; this may require quite a bit of work, planning and commitment. We need to learn to respond positively when our partner wants or needs our attention. This can be a skill to learn and practice, not a “default mode” for many of us. n Let your partner influence you: good relationships involve working as a team and making joint decisions. This does not mean to always do exactly what the partner wants, but means being aware of what they want and taking it into account.
n Solve your solvable problems: soft, gentle, mindful approaches to tackling existing problems or issues; focusing on defusing tension, looking for win-win agreements, compromise rather than winning. Practices such mindfulness, relaxation technics and slow breathing can be very beneficial. n Overcome gridlock: some problems just do not have a good compromise. If after searching for a win-win solution or a compromise this proves impossible initiate an open dialogue, acknowledge the fact openly and sit with the issue together. n Create shared meaning: rituals like taking turns to make each other breakfast or watching a movie together are simple; they do not require a lot of resources but can work wonders in helping to create a shared culture that expresses joint values and gives a shared purpose. All our relationships including intimate relationships are hugely important for us in order to experience fullness of life and to flourish. For our families, friends and work relationships the main principle is to prioritise relationships and simply make time and invest emotionally: show interest, encouragement, loyalty and support; learn to communicate effectively. In our next article we will explore the last components of the diagram: Meaning/Purpose and Accomplishments.
RESOURSES n Flow, Mihaly Csikszentmihalyi n Positive Psychology: a Practical Guide, B. GrenvilleCleave n The Will to Believe and Other Essays on Popular Philosophy, William James n positivepsychology.org n Achieve Your Potential With Positive Psychology, Tim LeBon
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