HEP REVIEW JULY- october 2016 Edition #91
NEW THE TREA LAND TMENT SCAP How h E new h as the rol lo ep C m edica ut of tion progre ssing? been HEP B FACT 15 thi ngs ev S shoul eryone d know
LET’S MAKE HEP C HISTORY!
ALSO INSIDE...OTHER BATTLES TO WIN n HEP B FREE n GRIBBO’S LIVER TRANSPLANT n HEALTHY RECIPES
HEP REVIEW Editor/Design/Production Grace Crowley
Editorial Committee Tim Baxter Paul Harvey Alastair Lawrie Stuart Loveday David Pieper Lia Purnomo Yvonne Samuel Rhea Shortus Denise Voros
Contributors & content Ngaio Chandler Steve & Faye Gribbin Kyle Leadbeatter Lila Pesa David Pieper Rhea Shortus
Hep Review advisors Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Rhoslyn Humphreys, Prof Geoff McCaughan, Dr Cathy Pell, Dr Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak, Ms Catherine Stevens
Proofreading/Sub-Editing Samantha Edmonds 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
© 2016 Hep Review ISSN 1440 – 7884 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 Hep Review is mailed free to HNSW members – membership of HNSW is free for people living with viral hepatitis in NSW.
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/HCVinformed 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.
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Contents
JULY 2016 Edition #91
HEP REVIEW
Features 6
18
34
The New Treatment Landscape
15 Things Everyone Should Know About Hepatitis B
The Gribbo Report
How has the March 1 roll-out of DAAs changed the face of hep C treatment in Australia?
Hep B is a potentially deadly virus that many people around the world and in Australia live with.
Regulars Letters..........................................4 Editorial........................................5 Local news................................. 13 World news................................ 14 Healthy recipes......................... 46 Going Viral: Three years of amazing outcomes...............50 Horrorscope.............................. 52 Crossword & comics.................53 Treatment clinic listings............54 Let’s Talk About: Positive psychology..................................59 Your feedback rewarded.......... 61
Mains Zepatier to be considered by PBAC.....................................24 Discrimination & hepatitis........ 25 Being Strong in prison .............. 27 Been cured? Other battles!.......28 Hep B Free!................................ 31 Hep C Testing Flow Chart.......... 32 Trying to get your hep C script filled?................................39 Viekira Pak treatment now available on PBS........................42 4 medication reminder apps for you.......................................45
Steve and Faye Gribbin’s journal recording Steve’s recovery from his life saving liver transplant at RPA early in 2016.
My Story My Hep B Secret It is highly likely that hepatitis B was transmitted to Jin during his birth. First diagnosed in 1997, John has lived with this secret for much of his adult life. ................................................... 17 Chantell’s Story Chantell was diagnosed with hep C six and a half years ago while undergoing treatment for drug addiction in rehab - this is her story. .................................................. 40
hep.org.au | Hep Review 3
letters Dear Hep Review, I was pleased to read a little bit on hep B in your current edition - but I’d like to see more. I would especially love to see information on pathology results, what are the ‘norms’ and how they go up when infected. I think this would catch people’s interest to know what their readings are. I know I loved seeing my pathology figures. Would love to see hep C examples, hep A etc, too. I posted information on Facebook regarding hep C and hep B and was dismayed at how little people knew about it, but at least I got to address their stigmas! Yours, Kim Thanks for your feedback and suggestions, Kim. We will definitely be including more information about hepatitis B in this and coming editions of Hep Review - in fact, please see 15 Things Everybody Should Know About Hepatitis B on page 18 in this very issue! You might also be interested in Jin’s personal story about living with hep B on page 17 and the new campaign - B In The Know (page 44) - which Hepatitis NSW is getting underway soon. Dear Hep Review, I think it would be good to have more information for people who contracted the virus through means other than injecting, and how to deal with the stigma attached to hep C and being labelled drug users. I believe this would be helpful for a lot of people, as I am sure there are lots of people out there in this situation. Helpful tips for dealing with the work place, privacy, discrimination, and your rights also asking for leniency during treatment would make for useful articles. Regards Donna Hello Donna. Many thanks for your feedback. This issue does get raised with us from time to time and while we would like to think the articles in each edition are of use to most if not all our readers, sometimes - due to our aims and objectives the balance will tip towards providing material for people who currently, or used to, inject drugs; but please check out the article on discrimination on page 25 in this edition. Dear Hep Review, Thanks for your informative magazine. It would be great though if there were more chances to win the survey prize. I’ve done all surveys for the last three editions and yet nothing. JL Cheers Natalie Hi Natalie! Firstly, let us say thank you very much for regularly sending in the survey, it helps us greatly to get the feedback from our awesome readers. Each issue, about 100 people also fill in and send us the survey; so any one of them, including yourself, have roughly a one in one hundred chance of winning the $100 Coles/Myer gift voucher. The winner is drawn randomly every four months, so overall those are pretty good odds! Please keep trying, you never know your chances. For anyone else who might like to send us their feedback and be in the running to win the $100 Coles/Myer gift voucher prize for this edition, please check out the survey on pages 61-62 at the back of the magazine. Postage is free or you can even do it online: bit.ly/HReviewSurvey
4 Hep Review #91 | July-November 2016
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editorial
GRACE CROWLEY
I
t has now been over three months since the hep C treatment landscape changed for the better. At Hepatitis NSW we are hearing from people who began their eight week treatment course in March and who are already waiting for their SVR test to see if they are cured. This is fantastic news! It is our great expectation and hope that the trend will not only continue but also increase substantially as more and more people learn that the Peg-Interferon days are over and then commence their treatments on the direct acting antiviral medicines. There were a number of teething problems around distribution and implementation encountered in the initial roll-out of the medication. Many pharmacies discovered that purchasing the drugs from suppliers at full price and then waiting for reimbursement from Medicare was not a viable business proposition for them. The bump on effect saw many people, script in hand, being told their chemist could not or would not stock the medications. Steps are “At Hepatitis NSW underway to resolve these supply issues we are hearing from to ensure that the new hep C drugs are as people who began widely available to as many people who are looking to buy them. their eight week
treatment course in March and who are already waiting for their SVR test to see if they are cured.”
At this point in time processes and procedures are still shifting and changing. Viekira Pak became available through the PBS as a treatment option from 1 May and there are other drugs that will benefit those who have Genotypes 4 and 6 and are being submitted for consideration to the Pharmaceutical Benefits Advisory Committee. All these issues and more - including some personal stories from people undergoing or who have finished treatment - are discussed in this issue’s feature article on the new treatment landscape. In addition, there is a load of other useful info and news on the new treatments peppered throughout these pages. But don’t think that hepatitis C is hogging all the attention. There is an outstanding article on hepatitis B that is stuffed full of amazing (and sobering) facts and figures, plus we have a reader’s story about their experience of living with the virus. But wait! There’s more! Steve Gribbin, a long time volunteer and advocate here at Hepatitis NSW, has generously shared the story of his experience recovering from his life saving liver transplant. Plus we have a load of news, updates, recipes, and stories that we’re sure you’ll enjoy reading. Please share your feedback with us through the form on page 61! Cheers Grace Editor
hep.org.au | Hep Review 5
B
y the time this edition of Hep Review is published Australia will have been over four months into a new era of hepatitis C treatment. Thousands of people across the country will not only have started treatment on direct acting anti-viral (DAA) drugs but an increasing number will have also finished their courses. While it is still too early to know, it is anticipated that cure rates for those people – providing they were able to follow their course as prescribed and had no complicating factors – will be in the 90-95% range that was reported during drug trials. Once the full data comes out over the next few months we’ll have a clearer picture of treatment uptake and success; this article however is only intended to provide an overview of the rapidly evolving new treatment landscape. Has it been working for people taking the medication? Was gaining access to treatment, at any of the relevant stages, easy or problematic? How did medical professionals, pharmacy and support workers navigate new treatment guidelines, medicine purchasing and availability, and patient care? While the roll-out of the new treatments has been relatively drama free and straightforward for many, there
6 Hep Review #91 | July-November 2016
were still a number of roadblocks encountered by others, especially within the first two months. There was not much time between the late December announcement in 2015 and the listing of the drugs Harvoni, Sovaldi and Daklinza on the Pharmaceutical Benefits Scheme (PBS) from March this year. Taking the Christmas/New Year period into account, there were only two months to put treatment options, protocols, systems and educational materials into place by the end of February. Despite this, a lot was accomplished –from across government, the health sector and non-government organisations, including Hepatitis NSW – within a very short period. Come Tuesday March 1st, the Australian Government made good on its promise and the new treatments became widely available to the public with no restrictions on health status, or whether or not a person injected
JACK
H
epatitis C has been an irritant that has rested in the back of my mind since I found out I was infected in 1993, and I’ve tried not to let it gain too much power in my life. While I’ve been lucky, I need to acknowledge that I’ve never had a normal liver function test and my liver has been damaged by the virus – not too much, but enough for me to care about being treated. I have been tired for years, but I could never work out if the fatigue was hep C or just getting older, being stressed, and/or living life. When the new treatments became available, I went to my local community health centre and got a prescription. Today, I am six weeks into what may be an eight week treatment. My reflections on the treatment are: n The bottle of tablets that I paid $38.30 for has $22,213.54 printed on the label. While I understand this may not be the actual cost paid by the Australian Government, I am very grateful that the government has subsidised the enormous cost of these medicines to enable me to be cured of hep C. I feel that there is a responsibility for me to do everything I can to be cured – which really is just to be taking a tablet a day. n I had nausea for three weeks. I assumed there could be side effects, although I don’t recall the doctor talking about these. After the nausea started there were a couple of times when I
drugs or were in prison. Less than two months later, this was followed by the announcement that another combination DAA – known as Viekira Pak – would similarly be made available from 1 May. At the time of writing this article in late May, a picture of the uptake of the new treatments for hep C during March was becoming clearer thanks to data gathered and released by the Kirby Institute. While that information was derived from PBS reporting of prescriptions during March the data itself may not be complete. Regardless it is clear there was a significant uptake of the DAAs during that first month. Over 1,800 people across Australia were prescribed Sovaldi, Harvoni or other forms of new hep C medication; that number for March 2016 alone was more than the number of people who were started on PegInterferon treatment for all of 2015. At 679 prescriptions, New South Wales counted for almost 40 percent of the new treatments begun during March, with Victoria at 27% and Queensland at 23%. Given there is estimated to be over 230,000 people in Australia living with hepatitis C those 1,800 prescriptions represent less than one percent of the iceberg, but it is still an amazing and very encouraging start. Australia-wide the PBS data shows that a huge majority of people were prescribed under the General Schedule – almost 90% in total. This is because liver clinics in many public hospitals have been issuing scripts under the s85
thought “if I stop taking the pills, the nausea will stop”. I knew that this was insane given the opportunity to be cured, and the experience of friends who went through the debilitating side effects of interferon based treatments. n I have many friends on Facebook with hep C. In the past 12 months, the discussion among my friends about hepatitis C has changed from people dying of liver disease or being on the transplant list to reports of blood tests showing no virus. This is amazing. n A few times over the last couple of weeks, I have woken up feeling refreshed. I don’t know how much of the fatigue was related to hep C, but the treatments are making a difference. Imagining not having hep C has a significant psychological impact for me. While not having shame or being embarrassed about being infected, the opportunity to be cured means that I feel like I can participate in my life far more fully. I’m not sure it will change my life choices but, at a very deep level, I’ve used hep C as an excuse not to feel like I am a full participant in life. I’m not sure I will know the full impact of hep C until I am rid of the virus. I suspect it will be more than I realise.
(as opposed to s100) scheme for two reasons: both to help people pick up their medication from a community pharmacy and to help avoid stock supply and cash flow problems that would have occurred if all people accessing the new hep C treatments through liver clinics had collected their meds from hospital pharmacies. Harvoni was the most commonly prescribed regimen in March – 64% of scripts written were for that medication. Sovaldi & Daklinza accounted for the bulk of the rest except for 70 scripts written for sofosbuvir with other agents such as ribavirin, or peg-interferon which is still being used to treat genotypes 4, 5 and 6. Of those started on Harvoni, almost three quarters were given a 12-week course, with almost 20% placed on a 24-week course and the remainder given only eight weeks. Likewise, a course of Sovaldi & Daklinza was most commonly prescribed for 12 weeks with just over 580 people starting that treatment during March. The remainder of those prescribed Sovaldi & Daklinza were given a 24-week course. Judging by only a small sampling of the feedback being received on the Hepatitis Infoline those people who started the eight week treatment courses in March are now waiting for their SVR test to confirm they are clear of the virus. Unfortunately there are still people who are missing out on access to effective treatment. While the old PegInterferon therapy was a one size-fits all treatment the
Continued next page... hep.org.au | Hep Review 7
SUE
T
oday I live a good, healthy and productive life and do not take drugs of any sort. I contracted hep C (genotype 1a) from my adventurous youth and my fear of enlisting for treatment was due to watching good friends go through the old Interferon treatment. I saw it knock people down like some terrible chemotherapy treatment and it was an emotional and physical roller coaster for most. Plus, my fellow genotype 1a sufferers were not cured even after all that. I have a great Liver specialist based at Tamworth Hospital who I have been seeing for a few years. He was understanding as to why I did not want to go on the Interferon treatment and never once made me feel bad for being fearful. He did however monitor my liver health on a regular basis and told me about a different treatment coming out which sounded very hopeful and much more successful for my genotype. So here I am. I have been approved for the new treatment. I was told the side effects - headaches, nausea and lethargy - were only experienced by 5% of patients. In trusting my doctor, I have finally surrendered to thinking that such side effects are not a big price to pay to add more years onto my good life. And besides, having hep C, I often suffer with headaches and tiredness anyway.
MY FEARS
n Will the treatment interfere in my busy career? The Doc says “no”.
n Am I going to get violently ill? The Doc says “no”. n Does this medicine send me along an emotional roller-coaster? The Doc says “no”, trusting that I am normally of good emotional wellbeing. n Am I going to lose my appetite? The Doc says “no”. I must admit this is a bit disappointing as I could do with some weight loss! n Will I lose my hair? The Doc says “no”.
MY TREATMENT
I have started Harvoni treatment and do not feel different in any way. I have not had any headaches, I do not feel tired or nauseated. The worry I had put myself through seems unnecessary.
PRESCRIPTION TIP
Give your pharmacy notice each time you need a script filled - at this early introduction stage, it may not be filled instantly. My course is for 12 weeks and the script is repeated each month. The clinic hand delivered my prescription to a pharmacy of my choice. I called into the pharmacy to get the script but because it is a new thing, the pharmacy hadn’t ordered my tablets, it only took them a couple of days. My liver specialist tells me that it is vital not to miss one day of the course but if I do I should let him know immediately.
current batch of DAAs are, for the most part, genotype specific. Genotypes 1, 2 and 3 are now more easily treated and, while 1 and 3 are the most common genotypes across Australia, there are still a significant number of people in the country living with genotypes 4, 5 or 6. There are next generation pan-genotypic drugs (able to treat across the spectrum of genotypes) in development but it may be some time before they arrive in Australia. At the time of writing the drug combination Zepatier, for the treatment of genotypes 1, 4 and 6, was being considered by the Pharmaceutical Benefits Advisory Committee (PBAC) for possible recommendation to the Health Minister for PBS listing status (see page 24 for further information).
SIDE-EFFECT FREE?
There is a lot of buzz about the lack of side-effects associated with the new treatments. And this is understandable, as opposed to the experience of treatment by Peg-Interferon & Ribavirin the nature of DAA side-effects seem, on paper, to be mild or negligible by comparison. Some of the common side effects reported from usage of Harvoni or Sovaldi & Daklinza have been fatigue, headache, nausea, diarrhoea and/or insomnia. Anecdotally, the extent to which someone may
8 Hep Review #91 | July-November 2016
experience any of those side effects is largely dependent on the individual and may range from extremely mild to, in some few cases, possibly severe. Furthermore, initial figures suggest that the longer someone was on the treatment the possibility of experiencing side effects could also increase. Concerns were raised in Melbourne at the Hepatitis Health Conference (May 2016) that patients that might experience severe side effects could have their concerns and discomfort dismissed due to the “no side effects” perception associated with the DAAs. Where people were once fully supported through the arduous Peg-Interferon regimen, the issue of support during treatment with the new DAAs, especially where a person is struggling with side effects, still needs to be considered.
SUPPLY & DEMAND?
In the first four to six weeks following the listing of hepatitis C DAAs on the PBS, the Hepatitis Infoline received a significant number of calls from people stating they had been unable to get their scripts filled at their community pharmacy. The issue was not an isolated one either, with calls from across Sydney and the state. A health care worker from the Broken Hill area advised they had clients with scripts for the hep C treatment who
could not get them filled. Another caller claimed that not only was the pharmacy’s software not recognising new medications, even after finding a pharmacy that would dispense the drugs there were waiting times to get a script filled. For many pharmacies, especially the smaller ones, there were multiple administrative and financial issues and potential burdens involved in filling the DAA scripts. Some other examples provided via the Infoline included: n A northern beaches pharmacy found their usual supplier was unable to supply them with Sovaldi. n After dispensing nine scripts in March, a chain of pharmacies had significant pressure put on their line of credit with their supplier. Slow reimbursement from Medicare led to cash-flow management issues and the group was forced to stop filling new scripts until better arrangements could be devised. n A caller to the Hepatitis Infoline advised that his regular pharmacy was having significant problems trying to obtain Harvoni from their supplier due to “significant demand”. Trying a second and third pharmacy the caller found that both dealt with the same supplier and were having the same issues. n Another Infoline caller said they had been prescribed Harvoni from a Sydney based hospital’s Liver Clinic, the hospital pharmacy was unable to fill the prescription and could not give a date when it could be filled; they were having issues obtaining the drugs.
n A community pharmacy in the foyer of a public hospital received 15 scripts on 1 March and needed to set up a bank line of credit for $150,000 to cover their upcoming tax BAS payment. n A chemist filled a script on a faxed form that contained errors; the PBS would not reimburse and the pharmacy ended up $15,000 out of pocket. n Within prisons a number of scripts had reportedly been written however there were some issues procuring the drugs and the expected time of treatment commencement for some prisoners was potentially delayed as a result. Fortunately many of these teething issues have been, or are being, resolved. The pharmaceutical companies are also acknowledging the cash-flow pressures on community pharmacies and some have established programs with significantly extended payment terms (see page 13 for news on one such program started by Abbvie to support access to Viekira Pak). In order to help people with scripts find pharmacies who are willing and able to dispense the medications Hepatitis NSW has been contacting chemists across the state regarding the new DAAs. Some pharmacists were provided with relevant information and those who were dispensing were added to an online directory. Currently the directory lists over 300 community pharmacies across New South Wales and is continually being added to. See: hep.org.au/services-directory
Continued next page...
A COMMUNITY PHARMACIST’S PERSPECTIVE ON DISPENSING DAAS n Depending on a patient’s needs (genotype, cirrhosis, previous treatment experience), a prescription for their treatment is written by the doctor for 8, 12 or 24 weeks. Most doctors are expected to write a single prescription to cover the full course of treatment. However, the PBS dictates that a supply of only 28 tablets (4 weeks) can be dispensed at a time. The result is a single prescription with two, three or six repeats. n These are high cost medications: • Daklinza 28 x 30mg tablets = $7,813 • Harvoni 28 x 90mg & 400mg tablets = $22,213 • Sovaldi 28 x 400mg tablet = $19,444 n Medicare reimburses pharmacies for the cost of the product plus a dispensing fee and an admin (AHI) fee. For every 28 days’ supply of DAAs dispensed, the pharmacist makes a gross profit of $76.93.
n Medicare reimbursements can take up to 16 days; the suppliers’ payment terms can be short as 15 days. As a result a pharmacist may be in the position of needing to cover the costs of the DAAs until the Medicare reimbursement is received. The high cost of DAAs can disrupt pharmacies’ routine business practices and lines of credit from suppliers. n The Pharmacy Guild has advised its members that: • Patients and prescribers should be advised if DAAs are ordered on demand by the pharmacy rather than routinely stocked; • Patients should be encouraged to lodge their prescription in advance before their current prescription runs out to ensure no break in treatment. Further PBS info on hep C listings: bit.ly/1qFWs7d
hep.org.au | Hep Review 9
GETTING TREATMENT
Treatment using Interferon is a specialised process that has almost exclusively been the domain of liver clinics and related specialists. While gastroenterologists, hepatologists, or infectious disease physicians experienced in the treatment of chronic hepatitis C infection are still eligible to prescribe the new DAA medicines, general practitioners (GPs) are now also eligible to prescribe under the PBS, provided that is done in consultation with an appropriate specialist. The consultation can be over the phone, by Skype or in writing. A GP is not obliged to provide treatment if they do not feel qualified or able to do so, in which case they should refer their patient to someone who can. While GPs do not require special training to prescribe the new DAAs, if they do feel they need some guidance there are learning tools available (see the For GPs box on next page). GPs should refer to Liver Clinics for complex cases, including cirrhosis, co-infection and genotypes 4,5 & 6. The shift in procedure around hepatitis C treatment seems to have caught some practitioners and specialists off guard. While there were minimal issues for many seeking treatment, others did experience issues. Some patients reported to the Hepatitis Infoline that their GPs claimed to be waiting for “authorities” to send instructions to them and that, after receiving those guidelines, the GP would decide if they would treat. Some GPs were reporting difficulty in referring their patients to liver clinics, especially in some regional areas
of New South Wales. Phones were going unanswered in some clinics, possibly due to staffing or resource issues; while in at least one reported instance the staff at the liver clinic of a major hospital informed a GP he could not prescribe treatment without “special training”. This seems like a case of crossed wires since, although training is available for GPs wishing to treat for hep C with the new medications, it is not a mandatory requirement. Feedback through Hepatitis NSW’s network with local area networks highlights that clinicians are reporting three trends needing observation: n There are emerging concerns of drug-drug interactions, particularly with the use of some antibiotics interacting with the new DAAs; n The importance of compliance - i.e. taking the treatments as prescribed, as resistance to the medication is a known complication if doses are missed; and n There is ongoing need to ensure the appropriate health literacy of people accessing the treatments; for example, what doctors assume is easily understood is not always easily understood or acted upon by patients. The Hepatitis Infoline and other networks have provided a valuable resource for Hepatitis NSW to gather information on new treatment teething problems as they arise; not just for patients but for GPs and specialists. Any issues flagged were passed on to the health department to help improve processes.
HEPATITIS INFOLINE
T
he Hepatitis NSW Hepatitis Infoline offers confidential info, support and referrals across NSW. It’s a free call from landlines to 1800 803 990 and from prisons. With the arrival of the new treatments receiving major coverage in the media during the first week of March that month was a particularly busy one for the Infoline.
During December 2015, prior to the PBS listing of DAAs announcement, there was a “Buyer’s Club” desperation being expressed by callers. There had been lots of frustration and anger expressed pre-access to the new treatments. Follow-up calls in March and April with dozens of people from that time revealed almost all were on treatment. Few of them reported barriers to getting on treatment and all reported few or no side effects while feeling great. One man said he noticed the difference after the very first pill of Harvoni and he “was buzzing”. For several weeks, the Prison’s Hepatitis Infoline was advocating to Justice Health, and providing information to and emotional support for a caller in his 60s. In
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March he called to share that he had taken his first pill of new HCV treatment and finally feels hopeful about his future. “I am over the moon!” The staff on the Infoline report that it is amazing to hear how many people now have access to these new treatments and the happiness, relief and great feeling on the other end of the phone is absolutely wonderful.
MARCH HEPATITIS INFOLINE STATS
n 226 - calls regarding the new treatments; n 22 - of those calls were either from a GP or pharmacist; n 127 - calls regarding testing; n 87 – Information packs have been sent to general community; n 12 – Information packs have been sent to GP or Pharmacist.
MARCH PRISON INFOLINE STATS
• 46 - calls from people in prison enquiring about new treatments; • 27 - calls from people in prison regarding testing.
EMMA
O
ne week after returning from a cruise I started to feel ill with nausea and vomiting but no explanation why. An ultrasound showed I had a gall stone but my blood test results revealed I had hepatitis C - how I contracted the virus is unknown. I was hospitalised twice within two weeks of receiving the news. I met my liver specialist in hospital; he was wonderful and advised me that I might clear the virus on my own. I felt a stigma from having hep C and felt that it was a dirty disease. I went for regular blood tests and visits to the hospital liver clinic; I was advised of a new drug and, as I suffer from depression, my specialist nominated me for the new drug via an early access program to Abbvie drug company’s interferon free treatment. I was approved. I had to go for a final test before I started the program to see if the virus was still active. This was May last year and I had been told the virus had cleared itself! However, I had to go for a further test one month later to see if the virus was still clear; unfortunately it was not so I needed to start the Abbvie program. The liver clinic had the prescription for me ready to go and I went to the chemist at the hospital to collect my
THE ROAD AHEAD
Changes to hepatitis C treatment have not only offered realistic hope of cure for the 230,000 Australians living with the virus but has already had a significant impact on the way practitioners, institutions and organisations work. It is only early days but a significant and encouraging start has been made with over 1,800 people beginning their treatment in March. However, as this represents less than one percent of the total Australian population living with hep C, efforts to get people into treatment must continue. The important thing is to ensure that the systems for treatment continue to improve, that new medications that can treat other genotypes continue to be added to the PBS as they become available and, crucially, ensuring that the information is available to assist as many people as possible in the testing and treatment process so they can start their own journey to cure.
ACKNOWLEDGEMENTS
n Many thanks to Jack, Sue and Emma for sharing their stories of treatment. n All Hepatitis Infoline material used in this article had any personal and identifying information removed before being included. n Thank you to Paul Harvey and Aisling Dowling at Hepatitis NSW for providing information and material used in this article.
monthly doses. At the beginning I was advised it was a 12 week course, just before starting I was then advised it has been changed to 24 weeks. Once starting the treatment I was OK and I was doing well. Around week eight I started to have sideeffects, such as itchiness over my body and my body had become very sensitive even though I was using moisturising cream. This was my main complaint about the treatment. I also had a haematoma in my arm following a blood test during treatment. I reached ten weeks and my liver specialist asked me instead to stick to with the drugs until week 12 and then I could stop. I finished the treatment in September 2015 and have just reached six months of clearance – I had my final test in April and it has come back all clear. While I was living with the virus I had a wonderful support lady. She was amazing, I found trust in her and never felt judged. She was truly amazing. I am not sure if the stigma will change as much as we would like it to. But I will never judge a person for their story.
FOR GPs Clinical advisors to Hepatitis NSW have recommended a number of education tools from The Royal Australian College of General Practitioners (RACGP)/ Gastroenterological Society of Australia (GESA)/ National Prescribing Service (NPS) to help GPs with new hep C DAA treatment information. n Form to support consultation between specialists and general practitioners >>> bit.ly/hepc-consultform n Information and guidance regarding the medicines and prescriber eligibility >>> bit.ly/hepc-eligibility n Recommendations for management of hepatitis C virus consensus statement >>> bit.ly/hepc-consensus n Managing hepatitis C in primary care: free online training module on the diagnosis, treatment and ongoing management of people with chronic hepatitis C infection >>> bit.ly/manage-hepC n HealthPathways: online health information portal for GPs to be used with patient consultations. Networking tool connects GPs with local liver specialists for s85 treatment sign off >>> bit.ly/healthpathways-hepc n ASHM training & resourses >>> ashm.org.au n HEP Drug Interaction Checker >>> hep-druginteractions.org
hep.org.au | Hep Review 11
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 12 Hep Review #91 | July-November 2016
LOCAL NEWS NEWS | AUSTRALIA DRUG SUBSIDIES COULD ELIMINATE HEPATITIS C IN AUSTRALIA WITHIN A DECADE, EXPERTS SAY There is a realistic chance hep C will be eliminated within a few years due to public subsidies of powerful new treatments, some of Australia’s top health experts say. “Australia has the ability to eliminate hep C as a public health threat over the next 10 to 15 years,” said Professor Margaret Hellard of Melbourne’s Burnet Institute. However, despite the new drugs to help combat the disease health experts say the stigma of having hep C will need to be overcome because of its link with injecting drug use.
access the therapies in a timely way, how they would like to do it,” said Margaret Hellard. She said avoiding judgement would be a key to overcoming stigma. “People who inject drugs are interested in treatment and are able to go on treatment,” she said. “Now that we have new drugs which are simple, easy to take, minimal side effects, people who inject drugs are really interested in treatment.”
Abridged from: abc.net.au Read in full: ab.co/1qqXJj3
The National President of the Pharmacy Guild, George Tambassis, applauded the initiative. “The extended payment terms being offered by AbbVie will significantly reduce the cost and the risk for pharmacies in supplying these expensive medicines,” Tambassis said. Pharmacies interested in registering for the AbbVie Pharmacy Program can contact: 1300 892 566
Abridged from: ajp.com.au Read in full: bit.ly/1Yj2OEV
ABBVIE AUSTRALIA ANNOUNCES LAUNCH OF PROGRAM TO SUPPORT ACCESS TO VIEKIRA PAK VIA COMMUNITY PHARMACIES Viekira Pak (with or without Ribavirin) is now available on the Pharmaceutical Benefits Scheme (PBS) for the treatment of genotype 1 chronic hepatitis C.
Sam Sejavka, musician with friend
Musician Sam Sejavka has had hep C for decades, and is a former injecting drug user. “The stigma does exist, it’s just how you cope with it personally,” he said. Bill O’Loughlin from Harm Reduction Victoria said the new treatment had huge implications. “We need to look at people who inject drugs to not only access treatment but to remain free from getting infected afterwards,” he said. “For example, making sure they have access to needle and syringe programs, counselling and information about maintaining their health, and they understand what being clear of the virus means and how to remain clear.” “The next hurdle will be to ensure our health systems and services are set up well to ensure people can
AbbVie, the drug manufacturer, has acknowledged the cash-flow pressures that the listing of new hepatitis C antivirals has had on community pharmacy. The “AbbVie Pharmacy Program” has been announced as a solution that seeks to reduce the financial burden on many pharmacies, while ensuring patients prescribed Viekira Pak can receive access to therapy without delay. Under the program AbbVie will provide registered pharmacies with extended payment terms of up to 120-days, dependent on wholesaler.
HEP B PATIENT WHO DIED IN HOSPITAL CONTRACTED VIRUS DURING DIALYSIS TREATMENT A man who died of hep B while on dialysis at Melbourne’s Northern Hospital contracted the virus from another patient. An internal Health Department report reveals the man caught hep B from another patient who had a genotype of the virus that was 99.9% the same. The man died in March 2014; his hep B was discovered in January 2014 after he slipped into a coma while on dialysis at the hospital. As hepatitis B is a reportable disease, the Victorian Health Department commenced an investigation into the cause of the transmission. It found that another patient who had hep B had undergone dialysis at the same time as the man on three occasions in 2013, and concluded the transmission occurred on one of those dates.
Abridged from: abc.net.au Read in full: ab.co/1UOMRaO
hep.org.au | Hep Review 13
WORLD NEWS NEWS | INTERNATIONAL
duration of DAA therapy with a projected cost savings of 16-20% per 100 treated persons and up to half in about 40% of patients,” Dr. Dahari and colleagues wrote. “Shorter regimens with low pill burdens, and few adverse effects, could improve patient adherence in difficult to treat populations.”
MORE COST-EFFECTIVE CURE FOR HEPATITIS C MAY BE CLOSE
Abridged from: sciencedaily.com Read in full: bit.ly/1ZuPr5o
The cost of treating the hep C virus (HCV) could be cut up to 50 percent if mathematical models are used to predict when patients can safely stop taking direct-acting antiviral (DAA) medication, according to a new study. “Recent clinical trials of DAAs against HCV suggest that cure of the infection often took place before the end of treatment,” said Harel Dahari, PhD, assistant professor at Loyola University Chicago Stritch School of Medicine. “Treatment currently is standardised to be given for a set period of time, not tailored to the patient,” said Scott Cotler, MD, FCO, hepatology division director for Loyola and Stritch professor. “In many cases, this may result in the prolonged use of expensive drugs with essentially no additional positive effect.” Using more frequent blood testing to determine HCV levels, Loyola researchers were able to identify when a cure was reached and predict when therapy could be discontinued. This modelling could allow for individualised treatment to achieve optimal results while reducing drug duration and cost. “The use of early viral-kinetic analysis has the potential to individualise
The review is being carried out by the EMA Pharmacovigilance Risk Assessment Committee. After conclusion of the committee’s review, it will make a set of recommendations, which will be forwarded to the Committee for Medicinal Products for Human Use, the committee responsible for questions concerning medicines for human use, which will adopt a final opinion. The final stage of the review procedure is the adoption by the European Commission of a legally binding decision applicable in all European Union member states. While the review is ongoing, patients receiving one of the direct-acting antivirals who have questions or concerns should speak to their physicians, the EMA advises.
EMA TO REVIEW NEW HEP C DRUGS FOR POSSIBLE HEP B REACTIVATION
Abridged from: medscape.com Read in full: bit.ly/1o7MQAL
The European Medicines Agency (EMA) has launched a review of the six direct-acting antivirals approved for use in the European Union for treating chronic hepatitis C virus infection.
FDA APPROVES EXPANDED ROCHE HEPATITIS C VIRUS RNA TEST AS AID IN DIAGNOSIS
They are daclatasvir, dasabuvir, the combination of sofosbuvir and ledipasvir, simeprevir, sofosbuvir and the ombitasvir/paritaprevir/ritonavir combination. The review follows cases of hepatitis B re-activation in patients who have been infected with hepatitis B and C viruses, and who were treated with direct-acting antivirals for hep C. The EMA will assess the extent of hep B reactivation in patients treated with direct-acting antivirals for hep C and evaluate whether any measures are needed to optimise the treatment.
14 Hep Review #91 | July-November 2016
Roche announced in March that it has received approval from the U.S. Food and Drug Administration (FDA) for its hepatitis C virus RNA test to be used as an aid in the diagnosis of HCV for certain patient populations. Results can now be used to confirm an active hepatitis infection, in addition to providing an accurate measurement of how much virus
WORLD NEWS NEWS | INTERNATIONAL
is in a patient’s blood, to help a physician determine the best course of treatment. This expanded use for the test saves a physician time in making a treatment decision and helps improve patient care. A positive HCV antibody test alone does not indicate an active infection. So it’s critical for physicians to diagnose an active infection by detecting the presence of hepatitis C virus RNA. The Roche test is the first quantitative HCV RNA test to be approved for use as an aid in diagnosis for active HCV infection. This expanded indication is in addition to its approved use as a viral load test to help physicians assess a patient’s response to antiviral therapy.
Abridged from: prnewswire.com Read in full: prn.to/1ZuRUwX HEPATITIS C DEATHS RISING IN THE UNITED STATES The number of deaths from hep C in the U.S. is on the rise, and the increase is hitting particularly hard among middle-age people, a study from the Centers for Disease Control and Prevention (CDC) reports. The study found that the number of deaths in the U.S. from hep C rose from 11,051 in 2003 to 19,368 in 2013. And baby boomers, or those ages 55 to 64, accounted for 51 percent of the deaths in 2013, according to the study. “This rise in deaths from hep C is alarming,” said Amy Nunn an associate professor of behavioural and social sciences at the Brown University School of Public Health. Nunn is currently working on a study about hep C screening and
treatment in Philadelphia. “This is an epidemic of enormous magnitude,” she said. In the analysis, CDC researchers looked at data collected from death certificates in the U.S. between 2003 and 2013. During the study period, there was an average yearly increase in deaths from hep C of more than six percent, the researchers found.
“Hepatitis C can be a silent illness, and people may have no symptoms for decades, allowing the disease to progress in the liver unnoticed,” explained Dr. Raymond Chung, director of hepatology and the Liver Center at Massachusetts General Hospital. Three to four million Americans may be chronically infected with hepatitis C, and most of those people are in their baby boomer years.
“IRRESPONSIBLE” NOT TO ADOPT NATIONAL HEPATITIS PLAN Fears about the high cost of hepatitis drug treatment must not delay action on a pan-Canadian hepatitis strategy, according to a coalition of 35 health groups. Action Hepatitis Canada (AHC), which includes the Canadian AIDS Society and the Canadian Liver Foundation, wants Ottawa to act now on a 2014 World Health Organisation resolution urging member states to adopt national hepatitis plans similar to those already implemented by Australia, France, the United Kingdom and the United States. “National strategies in these countries promote prevention and screening, as well as price controls for hepatitis C medicines,” said Patricia Bacon, chair of the AHC’s steering and executive committees. A national hepatitis strategy would result in higher treatment rates, improved prevention strategies, higher treatment retention, fewer treatment disparities and new pharmaceutical treatments moving faster to market, she said.
The challenge to health care providers is to identify people with hep C earlier, through screening, and to get these individuals into care sooner. There are now treatments that can cure the infection, or stop the development of the disease, Chung said.
According to the AHC the Canadian government needs to understand that if not tackled today, both hepatitis B and C will be major burdens on the health care system in the next 20 years, as today’s patients will suffer complications, develop liver cancer or require liver transplants. Proper care can prevent or cure this cancer, but due to the lack of a national strategy, the majority of patients who develop liver cancer will die from their disease.
Abridged from: livescience.com Read in full: bit.ly/1ox0FsD
Abridged from: cmaj.ca Read in full: bit.ly/1RKvJ0A
This increase in the number of deaths may continue for another five years or longer before it peaks, Chung said.
hep.org.au | Hep Review 15
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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16 Hep Review #91 | July-November 2016
MY HEP B SECRET JIN’S STORY
I
was first diagnosed with hepatitis B in 1997 during a routine check-up at a University medical clinic. Prior to being diagnosed, although I had heard about hepatitis, I did not understand what living with hepatitis B meant. Soon after my diagnosis, I started treatment at the Royal Prince Alfred. I was one of the first to receive treatment on Lamivudine. Due to some resistance to that treatment, they added Adefovir in combination with Lamivudine. I am now on Tenofovir, which I understand is one of the best drugs available currently to treat hep B. Although not certain, it is very likely that the hep B was transmitted at birth from my mum. Underpinning this theory is the fact that my older brother has also been diagnosed with the virus and I belong to an ethnicity where hepatitis is very prevalent. After being diagnosed with hep B, little did I know the profound impact that it would have on my life. One of the biggest challenges occurred when I met my wife and we were discussing the possibility of marriage. At this stage, my hep B has remained suppressed for many years due to effective treatment and my liver function remained normal with no detectable hep B virus DNA. However, I felt it was important and before the relationship went any further I wanted to disclose my hepatitis B status. With much trepidation, I told my future wife and to my surprise she too confided that she has also been living with hep B. We have been married for the past 17 years with two wonderful kids living a very middle class lifestyle in the suburb. I have never really spoken to my parents or my other siblings about my hep B status and it is a topic that both my wife and I feel very uncomfortable talking about. The fact that I am writing this under a pseudonym is indicative of the wider discrimination faced by those living with this terrible disease and a greater need for education within the community. It is for this reason I appreciate the work that Hepatitis NSW and other similar organisations do to promote awareness of hepatitis to the relevant stakeholders. Breaking down the barriers that people living with hepatitis face day to day and promoting effective treatment. I am sharing my story to express my solidarity with others who may be suffering in silence.
hep.org.au | Hep Review 17
15 THINGS EVERYONE SHOULD KNOW ABOUT HEPATITIS B
W
by Kyle Leadbeatter
ith hepatitis C grabbing all the headlines lately due to the revolutionary new treatments that are now available, it’s easy to forget about the equally important hepatitis B virus. Both viruses belong to the hepatitis family, but there are plenty of differences between them and hep B is very much worth knowing more about. With this in mind we’ve put together a list of 15 things everyone should know about hepatitis B…
18 Hep Review #91 | July-November 2016
1
DESPITE SHARING A FIRST NAME, HEPATITIS B AND HEPATITIS C ARE VERY DIFFERENT VIRUSES
Hep B and C are actually very different from each other with hep B being more similar to HIV and hep C being more similar to viruses like yellow fever. The thing that unites hep B and C is that they both affect the liver. The word hepatitis simply means inflammation (swelling) of the liver: “hepa” refers to the liver and “-itis” means inflammation. Just like arthritis is the inflammation of your joints (arthro is Ancient Greek for joints) and appendicitis is the inflammation of your appendix. Hepatitis covers any way your liver might become inflamed whether by viruses like hep B or C, by drinking a lot of alcohol, or by an auto-immune disorder. It’s important to remember hep B and hep C can be very different in testing, treatment, prevention and those groups most at risk.
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3
THERE ARE AN ESTIMATED 213,300 PEOPLE LIVING WITH HEPATITIS B IN AUSTRALIA
That’s a little less than 1% of Australia’s population. According to the 2015 Kirby Institute Annual Surveillance Report: n 38% of those living with hepatitis B were born in the Asia-Pacific region n 9% are Aboriginal or Torres Strait Islander n 6% are people who inject drugs n 4% are men who have sex with men n 4% were born in sub-Saharan Africa
Table: Estimated prevalence of chronic hepatitis B infection in Australia, by country of birth
THERE ARE THREE MAIN WAYS THAT HEP B CAN BE TRANSMITTED
n Mother-to-baby transmission during childbirth. n When blood containing the hepatitis B virus enters a person’s bloodstream. n Through sex with a person who has hepatitis B without the use of barriers like condoms.
Hepatitis B is most commonly transmitted during childbirth (not during the pregnancy itself) - which is known as ‘vertical transmission.’ Many people in Australia who contracted hep B did so from their mothers who were born overseas, a large number of whom don’t know they are living with the virus. Hep B is classified as both a blood-borne virus (BBV) and a sexually transmitted infection (STI). This means that hepatitis B can be found and transmitted in the blood and sexual fluids (semen and vaginal fluid) of a person who has hep B. The best protection against mother-to-baby, blood-toblood, or sexual transmission of hepatitis B is the hep B vaccination (see next page). For unvaccinated people prevention includes not sharing injecting equipment, avoiding unsterilised tattooing or piercings, and practising safe sex. However, if a person has been successfully vaccinated against hep B then their body will fight off the hep B virus off when it first comes into contact with the body and they will not get hep B.
Source: Victorian Infectious Diseases Reference Laboratory, Doherty Institute & Australasian Society for HIV Medicine, 2015 (ashm.org.au/hbvmapping)
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“
Making sure you are vaccinated is the easiest and most effective way to prevent getting hep B. It’s also really important in the goal of eliminating hepatitis B transmission in Australia.”
4
OF THIS ESTIMATED 213,300 PEOPLE, 44% HAVE YET TO BE DIAGNOSED
There are certain populations who are at more risk of coming into contact with hep B. If someone belongs to any of the following at-risk populations, they should consider getting tested for hep B from their doctor: n People from culturally and linguistically diverse backgrounds; in particular, people from Asia-Pacific or Sub-Saharan African backgrounds n Aboriginal and Torres Strait Islander people n Children born to mothers with chronic hepatitis B n Unvaccinated adults at higher risk of infection which includes: • men who have sex with men • sex workers • people who inject drugs • partners and other household and intimate contacts of people who have acute or chronic hepatitis B infection • people who are in custodial settings or have ever been • people undergoing dialysis • people with HIV, hepatitis C or both or have chronic liver disease
5
THERE WERE 6,635 PEOPLE DIAGNOSED WITH HEPATITIS B IN 2014
n There were 2,527 diagnoses in NSW alone. n More than 80% of these occurred in people aged over 25 years It should be noted that these are not necessarily new hepatitis B infections but people who were newly diagnosed.
6
APPROXIMATELY 90-95% OF UNVACCINATED ADULTS WHO COME INTO CONTACT WITH HEPATITIS B WILL CLEAR THE VIRUS NATURALLY
When an unvaccinated person is exposed to hepatitis B they have an infection for up to six months which is called acute hepatitis B infection. During this time a person can transmit the hepatitis B virus and a small number of people may experience symptoms such as nausea, abdominal pain and even jaundice (yellowing of the skin and eyes). Fortunately, the vast majority of unvaccinated adults (9095%) will fight the virus off naturally in that first 6 months. There are no real indications as to why some people clear the virus and a small number do not. If a person’s immune system clears the virus in these first six months, they will also gain immunity to hepatitis B for any future exposures. If someone has already been vaccinated successfully against the virus they are immune from hepatitis B infection and will clear the virus straight away. See #8 for more information on vaccination.
20 Hep Review #91 | July-November 2016
7
AROUND 90% OF UNVACCINATED CHILDREN WHO COME INTO CONTACT WITH HEP B WILL NOT CLEAR THE VIRUS NATURALLY AND WILL GO ON TO DEVELOP CHRONIC HEPATITIS B
Most people worldwide and in Australia who are living with hep B contracted it during childbirth. This is particularly in countries where hep B testing for pregnant women is not widespread. Hepatitis B screening is part of the antenatal testing for pregnant women in Australia and transmission to the child can be almost eliminated. Babies born to mothers with hep B are given hepatitis B immunoglobulin (which contains high levels of antibodies) along with their first dose of hepatitis B vaccine within 12 hours of birth and the usual second, third and fourth doses of the vaccine as per regular immunisation scheduling.
If an unvaccinated child is exposed to hep B through blood-to-blood contact during childhood, it is likely that they will go on to develop the virus chronically – meaning that they will need to monitor and manage their hep B for the rest of their life.
8
THERE IS A SAFE AND EFFECTIVE VACCINE FOR HEPATITIS B
Making sure you are vaccinated is the easiest and most effective way to prevent getting hep B. It’s also really important in the goal of eliminating hep B transmission in Australia. The vaccination works by stimulating your body to produce what are called antibodies which are a vital part of your immune response to infection. These little proteins attach themselves on to the hep B virus, stop it from being able to make copies of itself and they send a signal to the rest of your immune system to come along and destroy the virus. It’s like giving your immune system the secret to defeating the virus so that it’s ready to beat the virus as soon as it comes into contact with it. The importance of getting children immunised is that more than 9 out of 10 children who come into contact with hep B will have the virus for the rest of their life if they haven’t been vaccinated. The vaccine is safe, effective and the best way to ensure protection against the hep B virus if a child ever comes into contact with the virus. The hepatitis B vaccine, which has been available in Australia since 1983, was technically the first ever anticancer vaccine in the world. The vaccine involves 3 injections spread out over 6 months for adults. Babies/ young children are given the hepatitis B vaccine as part of the National Immunisation Program Schedule and a catch-up program was implemented in 2000 to those who missed out. For babies the vaccination involves 4 injections over the first 6 months of a child’s life – at birth, 2 months, 4 months and 6 months.
Vaccinations are also free for the following priority populations: n All people who live in a household with someone who has hep B; n Those with a sexual partner who has hep B; n Aboriginal and Torres Strait Islander people. And in certain situations: n People who inject drugs; n People in custodial settings; n People with HIV; n Men who have sex with men; n People with hepatitis C. Speak to your GP about getting vaccinated. A small number of people vaccinated can experience what is called a sub-optimal response. This means the vaccine has not worked as well as it should have and so to check for successful vaccination, a hepatitis B serology report is needed. If this blood test shows the level of hepatitis B antibodies is above a certain level then that person has gained hep B immunity (protection). Booster doses of hepatitis B vaccine are no longer recommended for people who have completed the full course of the vaccination (and have previously shown to have gained immunity on testing), if they are ‘healthy’ (have a strong immune system).
9
THERE WERE 395 DEATHS IN AUSTRALIA FROM HEPATITIS B-RELATED LIVER DISEASES IN 2014
n 44,730 people were living with severe fibrosis or hepatitis-related cirrhosis in 2014 which has more than doubled from 18,580 in 2004. n 18 out of 224 liver transplants in 2014 were related to hep B. n 27% (30,614) of those diagnosed with hepatitis B were in care.
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LIVER CANCER IS THE SINGLE FASTEST LIVER CANCER IS THE FASTEST INCREASING CAUSE OFSINGLE CANCER DEATH INCREASING CAUSE OF CANCER DEATH IN AUSTRALIA IN AUSTRALIA
Having hepatitis B is the most significant risk factor for developing liver cancer in Australia and the rate of liver cancer is increasing in Australia largely due to the numbers of people living with hepatitis B.
There is a 20-100 times increase in the risk of developing liver cancer for people living with hepatitis B and the chance of surviving more than 5 years after a diagnosis of liver cancer is less than 16%. Thankfully, currently this can mostly be avoided through regular monitoring, screening and treatment when necessary (see next page).
hep.org.au | Hep Review 21
11
FOR 1 IN 4 PEOPLE WITH CHRONIC HEPATITIS B, THE VIRUS CAN CAUSE LIVER CANCER, CIRRHOSIS OR LIVER FAILURE IF IT IS LEFT UNTREATED
This is mostly preventable! Monitoring and management of hepatitis B is relatively straightforward but many of the deaths associated with liver cancer, cirrhosis and liver failure are due to people not knowing they have hep B. This shows the importance of getting tested and monitoring regularly for those living with hep B, which is detailed below.
12
WHILE THERE IS NO CURE FOR HEP B, THERE IS EFFECTIVE TREATMENT AVAILABLE TO MANAGE THE VIRUS & REDUCE THE CHANCE OF LIVER DAMAGE
There are phases of disease progression with hepatitis B, some of which cause few noticeable effects and some of which can cause serious damage to the liver that can lead to liver cancer, cirrhosis or liver failure. Starting treatment for hepatitis B at the right time can cut the risk of developing liver cancer by as much as 75%. Unfortunately, only 27% of people who had been diagnosed with hep B were under the care of a doctor in 2014. People living with hep B should get a check-up by their GP every 6-12 months (how often will depend on your condition and age). Usually this involves the following tests: n A liver function test that checks the levels of certain chemicals in the blood which indicate how the liver is doing. n Full hepatitis B blood testing which looks at levels of the virus present in the blood as well as the presence of certain antibodies.
n Regular 6 monthly liver cancer surveillance (abdominal ultrasound and blood test AFP) is recommended in men >40 years, women >50 years, African people >20 years and people with cirrhosis or a family history of liver cancer. These may also be accompanied by a Fibroscan – a quick and painless machine like an ultrasound that checks for any damage to your liver. These tests and scans help to build a picture of the phase the virus is in, the health of the liver and whether treatment should be considered. Treatment can minimise the damage and bring the virus back under control. The most common treatment used involves taking one tablet a day.
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IT’S ACTUALLY THE IMMUNE SYSTEM’S RESPONSE, NOT THE HEP B VIRUS, THAT DAMAGES YOUR LIVER
Hepatitis B, like hepatitis C, is what is known as a “noncytopathic” virus. This means that the virus itself does not actually do the damage to the liver cells (called hepatocytes); it is the immune system that damages the liver cells when it tries to get rid of the hepatitis B virus. The virus lives and makes copies of itself inside the cells of the liver without causing significant damage to the liver itself.
While hep B interferes with the normal functions of the liver cells it does not cause scarring and damage to them. In certain ‘phases’ of the hep B life cycle, flare ups can occur when the immune system decides to rapidly attack the hepatitis B virus, damaging the liver cells as it breaks inside them to get to the virus. It is important for people with hepatitis B to monitor their health every six months to check if this damaging period is occurring and get treatment to manage the potential damage to the liver.
5 GLOBAL HEP B FACTS!
n
Most of the people who have hep B (almost two-thirds) are unaware of their infection.
n
The hep B virus is about 10 times more widespread than HIV infection worldwide.
n
The general perception is that HIV virus is very infectious and contagious, however the hepatitis B Virus is 100 times more infectious than HIV.
n
Of the 7.4 billion people worldwide 500 million are living with hep B and/or hep C; 450,000 of those are in Australia.
n
The hep B vaccine is very safe. Most people do not have any problems with it. The vaccine contains non-infectious material, and cannot cause hepatitis B infection.
22 Hep Review #91 | July-November 2016
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IN CASES OF EXTREME IMMUNOSUPPRESSION, HEP B CAN COME BACK IN THOSE WHO HAVE CLEARED IT AFTER ACUTE INFECTION
“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.”
It is true that a person who is exposed to hepatitis B and then clears the virus within six months will have immunity from hepatitis B. However, traces of hepatitis B are detectable in the liver cells of any person ever exposed to the virus. This can be seen in the presence of hepatitis B core antibodies (different from hep B surface antibodies). These are inactive and pose no risk to the person except in extreme cases of when the immune system is suppressed. During chemotherapy for instance, these pieces of hepatitis B virus can become ‘reactivated’ and cause serious flare-ups of the virus. Anyone who has ever been exposed to hepatitis B and undergoing chemotherapy or immunosuppressive therapy will be tested. A person with a positive hepatitis B core antibody test will need monitoring by a liver specialist in these cases. People with a detectable level of the virus will need antiviral treatment during and for some time after their immunosuppressive therapy.
15
“It’s so much better to talk to someone than bottling it all up inside, especially if you are on treatment.”
PEOPLE WHO HAVE HEPATITIS B CAN ALSO GET HEPATITIS D
Hepatitis D, or hepatitis delta, is another virus that affects the liver but which can only exist if a person already has hep B virus. Hepatitis D is spread by blood-to-blood contact or sexually just like hep B but if a person doesn’t have hep B they can’t get hep D. Hep D has been seen to be associated with the more severe forms of hepatitis B infection and the easiest way to protect against hep D is to get vaccinated against hepatitis B as the virus cannot live without it.
SOURCES
“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.”
Many thanks to Catherine Stevens, Hepatitis B Community Clinical Nurse Consultant, at The Royal Prince Alfred Hospital for invaluable input, comments, and insight. Stats and information in this article from: n The World Health Organisation (WHO) n Cancer Council NSW n Cancer Council Victoria n The Kirby Institute Annual Surveillance Report, 2015 n The Australian Immunisation Handbook, 10th Edition, 2013 n The Second National Hepatitis B Strategy
Hep Connect treatment peer support
1800 803 990 hep.org.au | Hep Review 23
Zepatier to be considered by PBAC
N
ew Direct Acting Antiviral treatments were funded on the Pharmaceutical Benefits Scheme (PBS) from 1 March 2016. These treatments cure over 95% of people in just 12 weeks with minimal side-effects, but they will not be suitable for everyone with hepatitis C. The Pharmaceutical Benefits Advisory Committee (PBAC) is considering whether a new combination treatment for hep C should be made available on a fully subsided basis to people in Australia living with hep C. Zepatier is a once-daily, single tablet combination containing two direct-acting antiviral (DAA) drugs grazoprevir+ elbasvir that are active against hepatitis C genotypes 1, 4 and 6. It is especially useful for people with particular conditions such as: n people with chronic kidney disease; n people who have not responded to previous therapy; n people with liver cirrhosis; and n people living with HIV and HCV co-infection.
broader access for all people with hep C is important. We believe it is important for community members and healthcare workers to have their say and to tell the PBAC why these new treatments are so important. We provided a factsheet, submission guide and a link to the online submission site to enable community members to have a direct impact on broadening the choice of treatments available to people in Australia living with hepatitis C. Submissions closed on 8 June 2016, and an announcement should be made later in the year.
Hepatitis NSW asked Community Advocates and others to make a submission to the Pharmaceutical Benefits Advisory Committee (PBAC) in support of grazoprevir + elbasvir. Not everyone with hep C can tolerate treatments containing sofosbuvir, so
INFO SUPPORT REFERRALS HEPATITIS INFOLINE
1800 803 990 24 Hep Review #91 | July-November 2016
Discrimination & Hepatitis
D
iscrimination occurs when someone is treated less favourably than other people in the same or similar circumstances because of a particular characteristic they have, such as having viral hepatitis. The basis for hepatitis related discrimination is usually the fear someone has of contracting the virus, or their attitude towards injecting drug use (a major transmission risk for hepatitis). For example, ‘Joan’ goes to see a dentist, fills out a form and mentions that she has hep C. The dentist then tells Joan that she will have to wait until the last appointment. That dentist could be discriminating against Joan if they adopt a non-standard practice for fear that their workspace might become contaminated and that hep C might be passed on to other patients or themselves. “Standard infection control procedures” are practiced in all medical settings and ensure that workspaces do not become contaminated with blood or other body fluids.
ANTI-DISCRIMINATION ACT
Under the NSW Anti-Discrimination Act (1977) it is against the law to harass or treat someone with hepatitis unfairly because: n A person has hepatitis or someone thinks they have it. n A person had hepatitis in the past, or someone thinks they had it in the past.
n Someone thinks a person might get hepatitis in the future. n A person has a relative, friend or work colleague who has or is thought to have hepatitis.
HEPATITIS DISCRIMINATION
In general, discrimination against someone because they have hepatitis is against the law. This includes: n In most types of employment, for example when applying for a job, in a job or leaving a job. n When someone is prevented from getting a promotion or dismissed because they have hepatitis. Employers have a legal duty to provide employees with any special facilities or services they need to help them do the job, as long as it won’t cause the employer ‘unjustifiable hardship’. n When someone tries to get most types of goods or services, such as from banks, shops, pubs and government departments.
hep.org.au | Hep Review 25
n When a person with hepatitis is seeking health care services, they are entitled to proper medical treatment from doctors, hospitals and dentists. n When someone rents or tries to rent accommodation. n When someone applies to get into a course or are studying in any government educational institution. n When someone with hepatitis tries to enter, join or get services from a registered club.
“
When a person with hepatitis is seeking health care services, they are entitled to proper medical treatment from doctors, hospitals and dentists.
OTHER LEGISLATION
The Disability Discrimination Act 1992, a federal law administered by the Human Rights and Equal Opportunity Commission also covers discrimination against people with hepatitis. It may also be against the law if an employer, workmate or service provider tells anyone else that someone has hepatitis when the person hasn’t given consent. This may also be against state and federal privacy laws. For more information on privacy laws: Privacy NSW: 02 9228 8585 Federal Privacy Commissioner: 1300 363 992 For more information about discrimination and the law, contact the Anti-Discrimination Board (ADB) Enquiry Service: Sydney: 02 9268 5544 Toll free NSW: 1800 670 812
MAKING A COMPLAINT
The Anti-Discrimination Board (ADB) can provide information about everyone’s rights. The Board treats all complaints confidentially and their services are free. The ADB has the legal power to investigate a complaint. If it appears to be against the law, they will try to help the person making the complaint and the person (or
organisation) they’re complaining about reach a private settlement that everyone can agree on. The settlement will depend on each case. Most complaints are resolved through private settlement. If a case isn’t resolved this way it may go to a court that provides a legal judgement in order to try to settle complaints.
LEGAL ADVICE
The HALC Legal Centre is an accredited community legal centre that provides free advocacy and advice on a range of issues including hepatitis related discrimination, privacy and health care complaints. website: halc.org.au phone: 02 9206 2060 (Sydney & NSW) The NSW Disability Discrimination Legal Centre aims to help people with disability to use disability discrimination laws. They provide accurate and easy to understand advice to people with disability in NSW who want to make a complaint of disability discrimination. phone: 02 9310 7722 (Sydney) toll-free: 1800 800 708 (NSW) In some cases the Human Rights and Equal Opportunity Commission (HREOC), may be able to help. phone: 02 9284 9600 (Sydney) toll-free: 1800 021 199 (NSW) If you need to speak any of the above services in a language other than English, call a telephone interpreter on 13 1450. Ask for an interpreter and when they come on line, ask them to call the number you want. You will then be able to speak via the interpreter. For more info about the details in this article: Hepatitis Infoline: 1800 803 990 web: hep.org.au The information used in this article was originally developed by Hepatitis NSW with assistance from the Anti-Discrimination Board of NSW and Privacy NSW.
26 Hep Review #91 | July-November 2016
HEPATITIS NSW PROJECT FOR THE CORRECTIVE SERVICES NSW INTRANET
in prison
A
fter some earlier collaborations, Hepatitis NSW was approached by Corrective Services NSW in late 2015 with a proposal to provide content for their prisoner accessible intranet.
The front page of Being Strong: design for the site copies many visual elements from the Hepatitis NSW web site.
An intranet - unlike the internet or “world wide web” - is a closed computer network, often used by companies and organisations for the purposes of internal communication, knowledge distribution and staff collaboration. In the case of the CSNSW Intranet - also known as the Green Network because of the colour of the computer boxes - the intention is to give prisoners access to educational, legal and employment information and resources. The CSNSW Intranet has no connection to the internet, anyone using it is not able to click on a link to go to an external web site or email service. Prisoners using the CSNW Intranet are provided with individual log in details so that they can use any computer connected to the state wide network and access material, resources or work they may have previously saved. Being Strong was developed by Hepatitis NSW using mainly repurposed existing resources, with printed material being modified into PDFs. Furthermore, with the help of volunteers, spoken recordings of the text were added so the PDF can also read aloud the words if required. Low cost videos were produced for the site using an iPhone, free stock video and slides from existing resources. Finally, due to the technical restrictions built into the CSNSW Intranet browsers, the site around which the resources can be browsed and opened needed
to be “low-tech”. Unlike modern websites there are no slideshows, forms, databases or other bells and whistles; Being Strong is a straightforward site with easy navigation and minimal coding. The three main sections focus on health, the liver and getting treatment . Some of the resources include PDFs on Managing Liver Health, Cleaning Fits, and Hep C; and videos on Hepatitis B, Transmission TV and Hepatitis C. The site has been designed to allow new content to be easily added as needed. Being Strong was launched on the CSNSW Intranet in late May. If you’re inside, hop on now and check it out!
HOW TO ACCESS BEING STRONG The Intranet is available to adult inmates in public Corrective Services NSW prisons (not available in Juvenile Justice Centers or private prisons). Speak to the Education Officer for approval to be added to the system. A Transmission TV video on hepatitis C is one of many resources included on the Being Strong site
Once you log into your personal desktop account you will find Being Strong via the computer’s Start menu > All Programs > Being Strong
hep.org.au | Hep Review 27
B
een cured of hep C? Already got your hep B under control? There are tens of thousands of other battles still to be won in NSW! Thousands of people have commenced treatment with new Direct Acting Antivirals for the treatment of hep C since they became available in Australia through the PBS on 1 March 2016. Maybe you are among the first group who have finished treatment already and are now waiting to find out if you been cured of hep C. Congratulations if you have “slayed the dragon” – that is fantastic news. Now we would like you to help us reach other people with hep C to fight their battles, and win. The new treatments and their availability for every Australian living with hepatitis C came at the end of a long battle for Equal Treatment Access. That battle was spearheaded by our volunteer community advocates - people from all over NSW with lived experience of viral hepatitis who help implement our advocacy campaigns. They used their knowledge of living with hepatitis and the skills they obtained from training to campaign for changes that benefit everyone living with or affected by viral hepatitis. Your treatment and cure is an important step towards our aim of a world free of viral hepatitis. Unfortunately there are still more than 200,000 people living with hepatitis C and in addition, more than 200,000 living with hepatitis B in Australia. But you can help improve the lives of people in affected communities across NSW, by becoming one of our Community Mobilisation Volunteers to help other people find out about the new treatments. Then use your experience and success help give them the confidence and skills to access treatment and cure too. And if you have hepatitis B and are already under the medical care of your doctor or liver clinic - and maybe on treatment for hep B or not, we are really keen to hear from you and have a chat about how you can become involved in helping the 44% of people living with hep B in NSW who remain undiagnosed access HBV testing, and then help them access hepatitis B and treatment. While there is not yet a cure for hep B, there are good, easy-take treatments that are approved and funded by the
28 Hep Review #91 | July-November 2016
Australian government that prevent people living with hep B from progressing to serious liver disease and liver cancer. In 2016-17 and beyond Hepatitis NSW will carry out a major community mobilisation campaign that will: n Support people across NSW living with hep C to access the new treatments through GPs and liver clinics and help them achieve cure; and n Support and encourage people across NSW who are at risk of having hep B to get tested, and then get linked up with a doctor to help them manage their hepatitis B so they can stop it in its tracks.
If you are have lived experience of viral hepatitis and would like to help others in a range of different ways, please join our Community Mobilisation Program as a volunteer. We will provide free training, support for you to help others and you will get to be part of a friendly and professional community team.. To find out how you can get involved contact: David Pieper phone 02 9332 1853 email campaigns@hep.org.au
OTHER WAYS OF GIVING BACK
While enjoying your new found health, you may find that the hepatitis experience has left an indelible impression on your life. Many people who have been cured feel they would like to continue their involvement with Hepatitis NSW as a way of ‘giving back’ Other ways you can continue your involvement with Hepatitis NSW include: n Membership is always free for people who have been affected by viral hepatitis. Your membership helps us demonstrate we are representative of those also who have now cleared the virus in our community. n Our Hep Connect project is looking for people with experience of interferon-free treatments who can provide telephone peer support to others who are thinking of starting or currently on treatment. Full training is provided. n Our C-een & Heard speakers project is looking for people with lived experience of hepatitis C or hepatitis B who are willing to tell their hepatitis story to groups of healthcare workers, educators and others in your local area. This is essential work in breaking down stigma and discrimination and tremendously fulfilling for those involved.. n Subscribe to The Champion eNewsletter to keep up to date with new developments and the latest challenges in the world of viral hepatitis. n Become a donor. Hepatitis NSW is a registered charity and donations over $2 are tax deductible. Donations help us undertake work that government does not fund directly, such as advocacy. What could be more satisfying than supporting a charity which has supported you? Whatever you decide it is our sincere wish that you become a life-long friend of Hepatitis NSW.
Contact our Hepatitis Infoline 1800 803 990 for more information on getting involved. hep.org.au | Hep Review 29
PREVENT | TEST, MANAGE, TREAT | ENABLE
BBV & STI FRAMEWORK FOR ABORIGINAL PEOPLE IN NSW RELEASED NSW Health has released the NSW Aboriginal Blood Borne Viruses and Sexually Transmissible Infections Framework 2016-2021. The Framework outlines the priorities for blood borne viruses and sexually transmitted infections prevention, testing, treatment and management for Aboriginal people in priority settings. Implementation of this Framework in conjunction with the current NSW strategies for HIV, STIs, hepatitis B and hepatitis C will help support the achievement of health outcomes and equity for Aboriginal people in NSW. The Framework is aligned to support achievement of the goals and targets of the National Aboriginal and Torres Strait Islander Blood-Borne Viruses and Sexually Transmissible Infections Strategy 2014-2017. Download: bit.ly/1OoJEId
HEPATITIS HEALTH INTRANET FOR NSW PRISONERS
On the inside? Have questions about hepatitis and liver health? Check out Being Strong - a Hepatitis NSW site available through the Corrective Services NSW Intranet. Features info on the liver, looking after your health and getting treatment for hepatitis - with PDFs on Managing Liver Health, Cleaning Fits, and Hep C and videos on Hepatitis B, Transmission TV and Hepatitis C. Available to adult inmates in public Corrective Services NSW prisons speak to an Education Officer to get added to the system.
Start Menu > All Programs > Being Strong 30 Hep Review #91 | July-November 2016
Hep B Free!
by Rengen Parlane, Sydney University Hep B Free Society
I
n 2013, a group of five doctors and nurses got together to vaccinate a village in Papua New Guinea. Over the course of seven days they ran general health clinics, worked with the local health workers, and distributed thousands of vaccines. The success of that first visit inspired the group to continue to provide health services to communities without their own medical resources. That group is now the Hepatitis B Free Charity.
Sydney University Hep B Free Society We are one of two daughter societies of the Hepatitis B Free Charity. Our aim is to educate the student community about hepatitis B, raise funds to support screening and vaccination programs run by the Hepatitis B Free Charity and support local community projects which combat the spread of hepatitis B. Throughout the year we run numerous events, including trivia nights, debates, food-related fundraisers and educational forums to deliver on the fundraising and educational aspects of our mission. Our members also have the opportunity to volunteer in local screening, vaccination and educational projects within the wider community. The movement begun by the Hepatitis B Free Charity drew people together, and we hope to do the same. Our student volunteers come from diverse backgrounds and are studying a myriad of different fields, but what we all have in common is a deep desire to see a world without the suffering and heartache experienced as a result of hepatitis B. If you believe that a world without hepatitis B is a world worth fighting for then please join us in our stand. To get the latest updates on our society’s events and the great volunteering opportunities that we promote you can: n Like our Facebook page: Hepatitis B Free USYD n join our email list by emailing: usydhepbfree@gmail.com
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 31
32 Hep Review #91 | July-November 2016
ANTIBODY
A
MEANS THAT THE HEP C VIRUS IS PRESENT IN YOUR BLOOD AND YOU HAVE HEP C
PCR POSITIVE
THE PCR TEST SHOWS WHETHER THE VIRUS IS PRESENT IN YOUR BLOOD OR NOT
PCR TEST
1 IN 4 PEOPLE WILL CLEAR HEP C WITHIN 6 MONTHS
THIS BLOOD TEST WILL SHOW IF YOU HAVE EVER BEEN EXPOSED (HAD THE HEP C VIRUS IN YOUR BLOOD)
ANTIBODY TEST
YOUR DOCTOR, NURSE OR CLINIC WILL DO A
PCR
IF YOU ARE EXPOSED TO HEP C, FOR A 6 - 12 MONTH PERIOD, YOUR BODY WILL TRY TO CLEAR THE VIRUS.
MEANS YOU HAVE BEEN EXPOSED TO HEP C AT SOME TIME IN YOUR LIFE
ANTIBODY POSITIVE
PCR
ANTIBODY
A
MEANS YOU HAVE NEVER HAD HEP C
ANTIBODY NEGATIVE
MEANS YOU HAVE CLEARED THE VIRUS AND THAT YOU DO NOT HAVE HEP C
PCR NEGATIVE
NO MORE TESTS NEEDED
TO TEST FOR HEP C, START BY MAKING AN APPOINTMENT WITH YOUR DOCTOR, NURSE OR CLINIC.
HEP C TESTING
hep.org.au | Hep Review 33
IT CAN BE HELPFUL IN LETTING YOUR DOCTOR, NURSE OR CLINIC KNOW MORE ABOUT HOW WELL YOUR LIVER IS WORKING BY MEASURING CERTAIN LEVELS IN YOUR BLOOD.
THIS WILL DETERMINE WHICH COMBINATION OF TREATMENT WILL BE PRESCRIBED FOR YOU. (IF A FIBROSCAN IS NOT AVAILABLE AN ULTRASOUND MIGHT BE USED INSTEAD.)
THIS IS A SIMPLE, QUICK, PAIN-FREE WAY FOR A NURSE TO CHECK FOR ANY LIVER DAMAGE. IT IS LIKE AN ULTRASOUND AND DOESN’T HURT. IT WILL SHOW UP ANY FIBROSIS AND CIRRHOSIS.
FIBROSCAN
THIS TEST MAY BE USED DURING YOUR TREATMENT TO SEE IF THE TREATMENT IS WORKING. YOU WILL GET THIS TEST AGAIN 12 WEEKS (MINIMUM) AFTER FINISHING TREATMENT TO CHECK IF YOUR TREATMENT IS SUCCESSFUL. YOU MIGHT ALSO GET YOUR VIRAL LOAD CHECKED BEFORE STARTING TREATMENT.
THIS BLOOD TEST MEASURES THE AMOUNT OF HEP C VIRUS IN YOUR BLOOD.
PCR VIRAL LOAD
IT’S REALLY IMPORTANT TO TELL YOUR DOCTOR, NURSE OR CLINIC IF YOU HAVE BEEN ON TREATMENT FOR HEP C BEFORE.
NEW WAYS TO CHECK FOR LIVER FIBROSIS ARE AVAILABLE. THE APRI METHOD USES BLOOD TESTS (LIVER FUNCTION TEST/ FULL BLOOD COUNT). IT IS A USEFUL TOOL TO DETERMINE LIVER FIBROSIS WHEN A FIBROSCAN MACHINE IS NOT AVAILABLE.
YOUR DOCTOR, NURSE OR CLINIC WILL ALSO LOOK AT YOUR MEDICAL HISTORY AND ANY OTHER MEDICATIONS YOU MIGHT BE TAKING TO DETERMINE THE BEST POSSIBLE TREATMENT FOR YOU.
OTHER MEDICAL HISTORY
FIBROSIS MARKER
NO MORE TESTS NEEDED
Call our Hepatitis Infoline 1800 803 990 or look up our website www.hep.org.au
WANT TO KNOW MORE?
ONCE YOU HAVE BEEN CURED THROUGH TREATMENT, THERE IS NO NEED TO HAVE ANOTHER ANTIBODY TEST EVER AGAIN. THIS IS BECAUSE EVEN AFTER CURE, THE HEP C ANTIBODY TEST RESULT WILL SHOW POSITIVE, PROBABLY FOR AS LONG AS YOU LIVE. THE ANTIBODY TEST DOES NOT MEAN YOU HAVE HEP C. IT IS THE PCR TEST WHICH SHOWS WHETHER YOU HAVE HEP C OR NOT. AND AFTER CURE FROM TREATMENTS, YOUR HEP C WILL NOT COME BACK, UNLESS YOU GET RE-INFECTED BY A NEW EXPOSURE TO HEP C THROUGH BLOOD-TO-BLOOD CONTACT WITH SOMEONE ELSE WITH HEP C.
THIS IS A BLOOD TEST THAT MEASURES HOW YOUR LIVER IS WORKING.
A BLOOD TEST THAT CHECKS WHICH TYPE OF HEP C VIRUS YOU MIGHT HAVE.
THE DIFFERENT TYPES OF HEP C VIRUS ARE GENOTYPES 1- 6.
LIVER FUNCTION TEST
PCR GENOTYPE TEST
THEY COULD INCLUDE ANY OF THE TESTS BELOW.
PRE-TREATMENT ASSESSMENT TO HELP THEM WORK OUT THE BEST TREATMENT FOR YOU.
The
GRIBBO Report
W
hen Steve Gribbin was first diagnosed in the 1980s not a lot was known about “non-A, non-B” type hepatitis. He felt alone and wondered what this would mean for him and his wife Faye.
The possibility of a cure came four years later. His first series of treatment saw him injecting himself with Interferon three times a week. He lost some hair, had bouts of high temperatures, chills that left him shaking so badly he couldn’t walk and night sweats that meant having to change the bed sheets sometimes twice a night. He went twelve weeks with what seemed to be a dropping viral load but the treatment was unsuccessful. He undertook treatment again in 2000 and 2005 with much the same side effects each time but the added effect of throat ulcers from the Ribavirin tablets. The treatments took the same path as his first, 12 weeks with an unsuccessful result. With his hepatitis C seemingly untreatable, Steve’s liver health deteriorated and, over the next several years, he developed stage 4 cirrhosis. In 2014, he qualified for compassionate access to the new direct acting anti-viral treatments which, after 24 weeks, successfully cleared his hep C. Unfortunately, even though his hep C was cleared the damage to his liver remained severe enough to have him added to the transplant list. After spending 18 months waiting for a liver transplant he was called down from Tamworth to the Royal Prince Alfred Hospital in Sydney for the transplant late on January 23 this year. Third time lucky proved to be the charm for Steve who had received the transplant call twice before. This article has been put together from Facebook posts written by Steve and Faye over the period of his operation and recovery. Our gratitude to them both for sharing Steve’s “Gribbo Report”!
34 Hep Review #91 | July-November 2016
“ JANUARY 23 | STEVE
Fingers crossed for third time lucky. I had “the call” from the Royal Prince Alfred this evening and need to be there by 7 am. They’ll ring in the next hour if anything changes.
He started on soup water, orange jelly, and a cup of tea for dinner. He had 1/2 a teaspoonful of each and couldn't have any more but he kept it down. For desert he was handed the first of his oral anti-rejection tablets. Yum.”
JANUARY 24 | FAYE
Steve is having his operation as I write and it’s expected that it won't be over until 11 pm at the earliest, more likely 2 or 3 am. I can ring ICU at those times to see if he has arrived there and will be able to visit for a short time.
JANUARY 25 | FAYE
I arrived in ICU as the nurse was removing two tubes from the side of Steve's neck. Never having a problem with blood and such I held Steve's hand while she worked. When the first tube came out, all 60 cm of it, I was OK; but as she removed the next tube I felt faint. Not for 50 years have I fainted, but I politely said “I'll just sit down on the chair for a moment...” And that was the last thing I remember... I am now known by every nurse in ICU!
The news of the day for me was when the nurse said his hernia was fixed at the same time as everything else.
JANUARY 27 | FAYE
Not a great day for Steve today; he needed an MRI so the transplant team could check that one of the ducts in his new liver isn't too narrow and blocking flow. Fingers crossed we will find out the results tomorrow and I pray that another operation isn't necessarily. On the brighter side he had more tubes removed and, as the doctor said, “one less bit of plastic, mate, and a lot more comfortable.” Still more to go though; I think they are multiplying overnight.
Steve is still drugged and in a lot of pain. They expect him to be in ICU at least another two days and only family is allowed to visit and only two at a time.
JANUARY 28 | FAYE
He started on soup water, orange jelly, and a cup of tea for dinner. He had 1/2 a teaspoonful of each and couldn't have any more but he kept it down. For desert he was handed the first of his oral anti-rejection tablets. Yum.
The doctors are a little worried because he has a temperature so they are running more tests to make sure that this isn't just from the move. They started him on a course of antibiotics through his drip just in case.
They had him out of bed in a chair this afternoon for 10 minutes while his mattress was changed for an air mattress which is a lot kinder on his back.
At the moment they have stopped the energy food through his food tube and hope that this will encourage him to start eating a few solids as he is only eating things like custard. This could be causing a stomach upset that they are also checking for.
Each day is a challenge and will continue to be for a while.
JANUARY 27 | FAYE
Some more of the tubes have come out, but there’s still plenty left there. He’s still on high levels of pain relief and being fed through a tube in his nose but he started on full fluids today; not Steven's favourite food, so hopefully after he can manage a little more than two teaspoonful’s so the tube can come out. The vanilla ice cream scoop I tracked down in a nearby cafe was the winner and he managed to eat some of this. Steve was determined to sit in his chair for an hour today. It took a long time for the pain to go afterwards but they hope it helps with clots. He’s now on anti-rejection drugs twice a day, the dose will be adjusted until it is right. He also had his first needle of insulin today. All liver transplant patients are insulin dependent diabetics and they expect Steve to be.
I've arrived back at my apartment after getting Steve settled into the Liver Transplant ward.
Before he left ICU he sat in his chair for three hours and then walked on one of the armrest walkers around the circuit of the ward, he was exhausted and was ready to get back into bed but felt a great sense of achievement.
JANUARY 30 | FAYE
The doctors discovered they had over prescribed Steve's pain medication which was causing him to be slow at processing what was said to him. This came about because of the pain level he was in all the time. This has been corrected and he is slowly getting back to his normal cheeky self. The physio came today and wants Steve to do one lap of the ward each hour and a couple of other exercises. A dietitian discussed what to eat and what not eat. He needs lots of protein and four protein drinks each day.
Continued next page... hep.org.au | Hep Review 35
JANUARY 31 | FAYE
Like chalk and cheese is the only way to describe how Steve looked today compared to yesterday. Sitting up bright as a button, not having that drugged look in his eyes, talking as only Steve can; non-stop. Thank you, Lord, I have my husband back! He went for a short walk with the walker, it was hard work but wonderful to see even though it was back to bed after that for a rest. He still has pain and enough medication to dull it. The doctors say the trick is to keep it at a manageable level.
JANUARY 31 | STEVE
Looks like I'll be in the land of living a bit longer. Thanks to my wonderful wife Faye and all of our fantastic family and friends. I told my nurse I'd shower myself this morning. He asks, “Are you sure?” Yeah, yeah says I. Fifteen minutes later I'm sweating more than the shower is wetting me. A shower is a marathon right now.
FEBRUARY 2 | STEVE
Struggling a bit today, lots of pain yesterday. One dressing was redressed to a collection bag as the drain hole has started to leak again. I'm lying here wondering if I should get some pain relief or try to ignore it. After a visit from friends I'm having better luck eating. They suggested chewing on sugar free gum to get the saliva flowing again and it seems to have worked a treat.
FEBRUARY 3 | FAYE
Steve is sitting out of bed longer and walking on the large walker four or five times a day now. This is making him tired and feeling a lot more pain. Even though he struggles I can see him getting a little stronger each day. He still has one area that is draining but as the drains and tubes have come out it makes it a little easier for him to move around. They increased the strength of the pain medication in the patches he wears to lessen his dosage of oral pain tablets but this made him really groggy.
STEVE
This is me on day two in ICU. The nurse is hooking one of the machines back up after refilling the medication in the syringe. There’s four tubes in my right arm, the main line into my heart and lungs at my neck, the two lines in my left arm and the oxy-meter on my finger. The feed tube and the oxygen tubes are in my nose. What you can't see is the three drains coming out of the wounds. 36 Hep Review #91 | July-November 2016
They are also having a struggle with his sugar levels. He has to drink four bottles of a special protein drink a day; it’s a little high in sugar but has a higher level of protein which shoots his sugar levels up. It’s a juggling act but it seems this can be the norm for liver transplant patients. He is starting to become familiar with the daily cocktail of pills that he has to take, these will be adjusted until the combination is right for him.
FEBRUARY 4 | FAYE
Steve either sat out of bed or did his walks around the circuit of the ward without any walker at all today. All going well he should be allowed to leave the hospital on Wednesday and go into accommodation near the hospital. One step at a time.
FEBRUARY 5 | FAYE
blood sugar OK, they changed my doses again.
Steve had his shark bite (his name for the operation site) cleaned and redressed today. It is just amazing how well it is healing and looks so clean.
After lunch we caught a cab to Diabetes NSW to get supplies and I had my first crack at stairs; only three but each one looked about six feet tall.
With the staples it looks like a giant zipper going from the top left of his chest down his side around the bottom of his stomach and across to the other side. He has a bit of a problem with the drain site but he is having antibiotics for that so hopefully it will soon clear.
We caught a cab to a place that sells nice steaks but it turned out there’s nothing on the menu that I can safely eat. So we bought some groceries and walked the 150 odd metres to the cab rank for a short trip home.
The staff are so helpful and kind at the RPA and look after him so well. He has daily visits from the surgical team, the medical team, the diabetes educators and the dietician all working together to get the best result for him.
FEBRUARY 7 | FAYE
The latest word from the doctors is, if there are no hiccups, Steve will be discharged on Wednesday and will attend the liver clinic as an outpatient. They will decide how often and for how long on the results of the blood tests that he will have each visit.
Once we got in and I lay down I admit I've over done it and submit to the pain medication.
FEBRUARY 14 | FAYE
On Saturday we moved from our accommodation at Sydney Uni into a studio apartment. A big day for Steve but so worth it as it is a lot more comfortable. On Sunday we had to dress the “shark bite scar”, cleaning around the staples with the fluorescent green, antiseptic lollipop sticks. “Ouch it stings,” he says. Suck it up, sunshine! It really looks good though, and is healing well.
Once all of the medications are balanced, the staples are out and the doctors are pleased with the results that very dim light at the end of the tunnel will be getting a little brighter and calling “HOME!”
Then a four hour snooze; a good thing because Steve had a restless night with broken sleep. He is having bad back pains and spasms after he sit or lays in one spot too long.
FEBRUARY 8 | FAYE
FEBRUARY 17 | STEVE
Today Steve threw aside his stylish hospital gown and put on a pair of PJ pants and a t-shirt. He went for a longer walk to the lifts down to level 4 and then back to level 5 where we sat for a while watching people walk by. When we returned to his room he sat out in his chair for a while and proceeded to talk and make jokes with the other patients in his room. It’s wonderful to see "Gribbo" back in fine form with his favourite pastime… talking.
FEBRUARY 10 | STEVE
Today I was sprung from hospital. After some false starts I finally got all my medications, instructions, appointment times and discharge letters. With that I headed to the discharge lounge before I was passed on to Faye. Instead of taking a cab we had a slow stroll to the Sydney Uni campus room where I am now.
FEBRUARY 12 | STEVE
Woke at 3.00 am with a hypo. Felt shaky and weak; had jelly beans and orange juice after a blood check. Woke at 6.00 am to another hypo; more jelly beans. After my insulin, breakfast and a shower it was off to the hospital. First some blood tests, then up to the clinic to have my wound re-dressed. Once the nurse took the drain bag off she cleaned the site and started painting me with “green lolly pops” which are an antiseptic liquid. All good. Down to the diabetic clinic, where yesterday they had changed my insulin doses. Getting out of the lift I couldn’t see properly. I'm sweating, shaking and can hardly walk; hypo again. After two quick apple juices and, with my
Another walk and I didn't even have to crack the whip!
Had all the staples out this morning. When they tell you it doesn't hurt pulling them out, I think you need to take in the grand scheme of how much pain you had been in! Seeing the specialist again tomorrow to have more blood tests. With a bit of luck they will drop some of the pills, either altogether or reduce the amount I have to take. On the way home we stopped at a small cafe that does all day breakfasts. I had forgotten just how good bacon is. May find out tomorrow how much longer I have to stay in Sydney. Fingers crossed it isn't much longer. I miss my home, my friends and my dog.
FEBRUARY 18 | FAYE
Another milestone reached today, the last stitch was removed. No change to the medication, this will start to happen next week. The diabetic educator changed his insulin slightly and said it would continue to change as the other medications changed; it’s a learning curve. What used to take Steve 20 minutes to walk to the clinic today only took six minutes. How wonderful it is to see him improving each day!
FEBRUARY 18 | STEVE
After lunch Faye and I were wondering if I wanted to go for a walk. Checking Google Maps on the phone we set off on what looked like a small walk, yeah right... Google Maps doesn’t show the uphill bits! Made it home but was well and truly worn out.
Continued next page... hep.org.au | Hep Review 37
FEBRUARY 19 | STEVE
Took the dressings off ourselves today. Used the saline water and sterile gauze to clean the couple of spots they are worried about and then painted the whole thing with my favourite lime green antiseptic lollipop sticks. It was a glorious day outside and we strolled up to King Street. I bought a thank you card and a couple of boxes of gourmet doughnuts for the nurses who looked after me in ward 9. We wandered to the hospital and dropped them off. All up today we walked at least 5 km.
FEBRUARY 20 | STEVE
After visitors, lunch and a trip to our little supermarket I realised how far I've come but also how sick I still am. I almost fell up the stairs and luckily had a shopping trolley to hold onto as we walked around. Although I have Superman slippers I am not he; I can't stand up all day. I still need a couple of hours lie down each day. It was still a great day. We could hear birds singing, people walking around the streets smiling and I'm still alive and able to spend time with my fantastic wife Faye. So don't forget, keep smiling, life is great.
FEBRUARY 23 | STEVE
Found out today I have an infection in the wound. The surgeon came in with a swab, held the wound open and pushed the swab inside; to be fair he did say “this is really going to hurt”!
FEBRUARY 26 | STEVE
Saw the specialist this morning and he reduced the dose of one of my pills but not the one I hoped he would. He was happy with how things are going but said we would have to stay around until the infection has cleared. Bugger. We headed to Broadway Shopping Centre and decided to get a few things; a belt for me as I somehow seem to have lost a little weight and my pants keep falling down! After lunch with friends and a trip to the market we walked the 2.5ks back to the unit, unpacked the groceries then had visitors. They were amazed at how well I look. Do me a favour after you read this; go look in the mirror. Smile at yourself and keep that smile on your dial. Then through the day share that smile with people you see!
FEBRUARY 21 | STEVE
Steve and Faye are now back home in Tamworth and, apart from a complication which has since been resolved, Steve continues to improve after his life saving operation.
FEBRUARY 22 | STEVE
Although Steve will never know the donor’s family he was encouraged to write them a letter. He says, “I’ve been a volunteer my whole adult life but in the last five or six years I wasn’t able to do anything. I want to tell them the donation will help me get back to helping people in my community.”
I'm still going with shark bite as my story: “Having the love of surfing that I do I was out with Mick Fanning when all of a sudden...”
On Monday friends and their son dropped in. It was great to hear a young child laughing; really is food for the soul.
38 Hep Review #91 | July-November 2016
Psst... trying to get your HEP C script filled?
Y
ou’ve seen your doctor and now have a script for your Direct Acting Antiviral (DAA) hep C treatment in hand. Unfortunately not all pharmacies stock these medicines. So what can you do to get the pills and get started on treatment?
s100 VS s85 SCRIPTS
s100 scripts are written as public hospital items and need to be dispensed in the public hospital pharmacy. Hospital pharmacies will usually be able to fill scripts on the day. s85 (General Schedule streamlined approval) scripts are written by GPs or specialists and are dispensed at community pharmacies. Community pharmacies will probably not have the capacity to carry stocks of the DAA medicines, but will be able to order them in – usually within 72 hours.
COMMUNITY PHARMACIES
If your community pharmacy is not able to fill your script you can try looking for one nearby using the Hepatitis NSW Directory: hep.org.au/services-directory Scripts are usually filled for a month at a time. It is important to remind the community pharmacy to order in your next month’s supply of medications about a week before the medications are due to be collected.
ONLINE PHARMACIES
The new hepatitis C treatment drugs can also be ordered from online pharmacies. While this might not be as secure as customers picking up their treatment drugs from a local pharmacy, it will be very helpful for people who live in parts of NSW with no pharmacies that fill these scripts.
Consumers are required to: n fill in their details online; n phone the pharmacy; n post the prescription to the address provided on the website.
The pharmacy must first receive the prescription. Once they receive the script, they will place the order for the medicine, which may arrive within 1-2 days and then the medicine is delivered through Australia Post. Please factor these delays into your refill requirements.
Try these online pharmacies: n chemistwarehouse.com.au n epharmacy.com.au n pharmacyonline.com.au n pharmacydirect.com.au n yourchemistshop.com.au n royyoungchemist.com.au If the treatment drugs don’t appear in their search option, call the online pharmacy. They can take orders over the phone (generally, a medicine doesn’t go live on their site until it’s ordered previously). Further, online pharmacies prefer to receive a call about the script beforehand so they can explain to the consumer the process.
TREATMENT COSTS
These medications are available on the PBS and people will be charged only the usual monthly co-payment paid for a prescription. This is currently $38.30 per month for general patients and $6.20 per month for concessional patients. Currently, the NSW Ministry of Health will pay the s100 co-payment costs but not the s85 co-payment costs.
For more information please call the Hepatitis Infoline on
1800 803 990 hep.org.au | Hep Review 39
C
hantell was diagnosed with hepatitis C six and a half years ago while she was undergoing treatment for drug dependency in rehab... this is her story.
A hep C nurse came to the rehab from the Royal Prince Alfred hospital to tell us about what hep C was and its affects on our health. All the women who attended the group that day were given the option to go and get tested if we needed.
So then I needed to have a PCR test to see whether I still had the virus or if my body had cleared it. Another two weeks later the results were in and, yes, I tested hepatitis C positive and had genotype 2... which meant nothing to me at the time!
As a street based sex worker for over 20 years I only ever got tested for HIV and nothing else. I went to RPA sexual health clinic to have tests for all blood borne viruses and STIs and returned two weeks later to get the results.
I went back to the rehab a bit depressed over the results testing positive to hep C. Mentally the diagnosis was messing with my head and for me having hep C made me feel filthy and contaminated. I didn't want to be in the rehab any longer because I felt like I might infect the other women in the rehab. I was assured by staff at the rehab that it was not possible as universal precautions were practiced on the premises at all times, but it just wasn't sinking in that I had this virus and I didn't want it.
The nurse I saw that day was fantastic. She could see that I was nervous and went out of her way to make me feel comfortable before reading out my results. My HIV and STI results had come back negative, but it looked like I had come into contact with the hep C virus at some stage.
40 Hep Review #91 | July-November 2016
“
...I needed to have a PCR test to see whether I still had the virus or if my body cleared it. Another two weeks later the results were in and, yes, I had tested hep C positive and had genotype 2... which meant nothing to me at the time!�
My journey started then with many trips to and from the RPA liver clinic where I saw a hep C nurse who sent me off to get more tests. I'll tell you what, I've never been jabbed so many times with a needle where something was taken from my body. As an injecting drug user over the years I was only ever used to jabbing myself with a needle and putting something into my body. All my tests came back OK with minimal damage to my liver from the hep C virus, which was a good thing the nurse assured me; however I didn't find comfort in knowing it. I was told that it would be best for me to wait until I had completed my drug treatment before going on to another treatment for the virus. It seemed like a better option to follow as I still had a couple of months left of drug treatment. I eventually finished rehab and moved into my own place. I started treatment not long after that and saw why it was important for me to wait to treat the virus outside of rehab. I would've never of been able to complete treatment for the virus in rehab due to the medication interferon. It was like walking into a brick wall every time I took the medication. Mentally, psychically and spiritually the treatment drained me. I had restless sleep, back pain, mood swings and depression. I pushed on though because I was determined not to let it beat me down. I looked at it like this, if I could stick it out for six months in what felt like the hardest drug rehab in the world, I could endure the hep C treatment for six months. And that's exactly what happened. I had my monthly check ups at RPA where my blood results were taken with all of them returning negative!
I saw a dietician on the other days of that month to help me with the right foods to eat and I even had a lovely counsellor call me every fortnight just to see how I was going and to give me advice on dealing with my sleepless nights and other things. It felt so good talking to the counsellor on the phone someone I could connect with who never judged me. I was so grateful for all the help I was getting from the people I saw. They made my journey through treatment so much easier and I wouldn't have been able to do it without their help. I finally completed my treatment after six months which proved to be worth every bit of pain and mental anguish at the time. My final results were still negative which was the best news ever and made me feel so happy. This also meant I didn't have to have interferon anymore and that I was free of the virus. I had no idea at the time that when I made that conscious decision to get help for my drug problem it was also going to help me work through treatment for hep C. Today life is good for me and for that I couldn't ask for anything more. Chantell is one Hepatitis NSW’s many great C-een & Heard speakers and also assists with some of our Living Well sessions. Thank you for sharing your story Chantell! Chantell went through the old interferon treatment for hep C, to find out about the new treatments read the New Treatment Landscape on page 6 of this edition. If you want to know more about the hepatitis C testing process check out the flowchart on pages 32-33.
hep.org.au | Hep Review 41
Transmission Magazine is Hepatitis NSW’s easy read publication featuring a comic developed by community, puzzles and basic info about hep B & C!
Viekira Pa I
n great news for people living with hepatitis C, treatment options have expanded again with Viekira Pak being also available through the Pharmaceutical Benefits Scheme (PBS) from 1 May.
Latest issue: Frank’s time in prison is nearly up. He’s making plans for the future and thinking about how he can get his music career back on track. He knows he might have hepatitis C, but will he make testing a priority when he has so much else on his mind?
Viekira Pak (a combination of ombitasvir/paritaprevir/ ritonavir, dasabuvir - with or without ribavirin) has been approved for the treatment of hepatitis C genotype 1, including people with mild to moderate liver disease. There are now multiple interferon-free options for the treatment of genotype 1, which is the most prevalent genotype of hepatitis C in Australia. In phase 3 clinical trials of Viekira Pak, which has been developed by AbbVie, most adverse events were mild in nature, with the most commonly reported being fatigue, nausea, itching and insomnia. Hepatitis NSW thanks the Commonwealth Government for including Viekira Pak on the PBS, and looks forward to even more additions of interferon-free Direct Acting Antivirals in coming years. Most importantly, we look forward to the role of drugs like Viekira Pak in offering a cure to the tens of thousands of people living with hepatitis C in NSW, and ultimately in helping to eliminate hepatitis C as a public health concern in Australia over coming decades.
To have a copy of this edition posted to you, email: transmission@hep.org.au Read online: hep.org.au/news-stand
42 Hep Review #91 | July-November 2016
One day’s dosage of Viekira Pak... three in the morning, one in the evening
ak treatment now available on PBS VIEKIRA PAK FACTS! To help you get your head around this treatment here is a brief factsheet relating to: n Viekira Pak (paritaprevir/ritonavir/ombitasvir and dasabuvir) in 4 separate pills, taken daily. n Viekira Pak plus ribavirin (paritaprevir/ritonavir/ ombitasvir and dasabuvir and ribavirin) in 6 or more pills taken per day.
Treatment genotypes? n Hep C genotype 1 • Viekira Pak • Viekira Pak with ribavirin pack
Success rates Viekira Pak (with or without ribavirin) achieves cure rates in excess of 90-95%, depending on pre-treatment variables such as the presence of cirrhosis, prior therapy, etc.
Treatment contraindications A contraindication is a condition or factor that might be a reason to withhold medical treatment due to the harm that it would cause the patient. Viekira Pak includes ritonovir which can lead to significant drug-drug interactions. All medications should be checked before prescribing with any hepatitis C medications. Pregnancy must be strictly avoided by both men and women treated with ribavirin (during treatment and for 24 weeks after). People are advised to talk to their doctor or specialist about treatment with Viekira Pak in pregnancy.
How do you pronounce it? n Viekira Pak - Vi-KEERA pak [see: bit.ly/1KX3PNt]
How long does treatment last? n Viekira Pak • 12 weeks for people with genotype 1b, no cirrhosis • 12 weeks for people with genotype 1b, compensated cirrhosis n Viekira Pak plus ribavirin • 12 weeks for people with genotype 1a, no cirrhosis • 12 weeks for people with genotype 1a, with cirrhosis • 24 weeks for people with genotype 1a, cirrhosis and prior null response to treatment
Treatment side-effects Viekira Pak is well tolerated with only minor side effects. When taken with ribavirin, it is well tolerated but may be associated with anaemia, fatigue, headache, skin irritation and insomnia.
One week’s worth of Viekira Pak...
hep.org.au | Hep Review 43
B IN THE KNOW
B
CAN YOU HELP US GET THE WORD OUT? Hepatitis NSW will be launching a new campaign in 2016 called B In the 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. B in the Know will work with some of the communities most affected by hep 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
44 Hep Review #91 | July-November 2016
4
“uh oh.. Did I take my pil s this morning??”
4
MEDICATION REMINDER
APPS 4 U!
I
f you’ve been prescribed any of the new oral treatments for hepatitis C it was probably made clear to you that you need to take your dose every day. There is a risk of the virus developing a resistance to the drugs if doses are skipped. However as we know, with all the distractions life throws at us, it can be easy to forget to take a dose on any given day - or to have difficulty remembering if you have taken the dose. Fortunately,
technology has a solution in the form of medication reminder apps for your smart phone or tablet device. Here are four free apps that you may find useful if you need a prompt or a handy means of keeping track for either iOS (Apple) or Android devices. This is just to get you started, there are many other apps available - some free, some not. As always, take care when installing third party software and beware of hidden terms and costs.
App: Med Helper v2.7.7
App: Pill Monitor v3.3
Platform: Android 2.3+
Platform: iOS 7 (Apple)
Features: Keeps track of your prescriptions; alarms to remind you when medication needs to be taken, when doctor appointments are scheduled and when meds are running low or about to expire.
Features: Schedule reminder of your pills; customer reminder time, repeat date and dosage of pills; remind you on time; chose snooze time if not convenient to take pills; check your reminders.
Google App Store User Score: 86% (from 3,428 ratings)
iTunes App Store User Score: 76% (from 66 ratings)
Users say: “One of, if not the best med tracking app on the market! Been using it for at least a year. It has helped me keep track with my med cocktail!” n “Very useful , just needs to be a bit more user friendly.” n “There’s room for some improvements but it’s better than any other app I’ve considered using.”
Users say: “Once your meds have been set up, this is an easy app to use. It is good to see trends on how “on time” I am taking my medications, so I can see if it is affecting my sleep or other symptoms.” n “It can be a little fiddly to add the medications.” n “It is not very flexible or user friendly if pills are taken at different times. For basic daily meds maybe OK.”
FREE: play.google.com/store/apps
FREE: itunes.apple.com/au (click ‘app store’)
App: MyMeds v4.3.1
App: Pill Organizer (Reminder)
Platform: iOS 7 (Apple)
Platform: Android 4+
Features: Sends daily medication and refill reminders; keeps your healthcare team and loved ones in sync with medications you’re taking; analyses your medication usage history.
Features: Allows you to create various medicine taking schedules; plan when you should take tablets, pills and all other medicines; alarm functions - control when and how many tablets you take.
iTunes App Store User Score: 80% (from 16 ratings)
Google App Store User Score: 86% (from 3,993 ratings)
Users say: “Great for managing my family’s medication schedule. It also helps when caring for an elderly parent. I love being able to easily share medication lists with our health care providers.” n “Has been great for managing my medications. It’s really easy to use and has some great features.”
Users say: “Awesome app. This has lots and lots of settings for each medication reminder.” n “Use this daily. Helps keep my pills in order.” n “I was looking for a medication reminder that was easy to use. The other ones weren’t great because the alarm wouldn’t go off or it just stopped working. Easy to use and its also very organised.”
FREE: itunes.apple.com/au (click ‘app store’)
FREE: play.google.com/store/apps
hep.org.au | Hep Review 45
Hot spiced apple cider Serves: 2-3 1.25L non-alcoholic apple cider 2 cinnamon sticks 6 crushed cardamom pods Heat apple cider, cinnamon and cardamom in a saucepan over medium-low heat. Bring to a simmer and cook for 5 minutes to allow the spices to infuse their flavour. Strain and divide among serving glasses. Serve immediately.
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 #91 | July-November 2016
Vegetable Soup
Smoked Salmon Delights
Preparation time: 15 minutes Cooking time: 25 minutes Serves: 6 Storage: Store covered in the fridge – suitable for freezing
INGREDIENTS • • • • • • • • • • • • •
1 onion, diced 1 tablespoon oil 1 teaspoon minced garlic or 1 fresh clove 1 teaspoon cumin 1 green capsicum, chopped 1 red capsicum, chopped 2 large carrots, chopped 400g tin crushed tomatoes 1.5 litres vegetable stock 0.5 cup red or brown lentils 1 zucchini, chopped 400g tin red kidney beans, drained and rinsed 1 small sweet potato, diced
METHOD 1. Place the oil, onion, garlic and cumin into a large pan 2. Cook over a medium temperature until the onion softens 3. Add the stock, tomatoes, carrots, zucchini, capsicum and lentils and bring to the boil 4. Reduce the heat and simmer for approximately 20 minutes 5. Add the kidney beans and simmer for another couple of minutes 6. Pour contents into a blender and puree, or serve as is
Preparation time: 20 minutes Cooking time: nil Serves: 8 Storage: Store covered in gladwrap in the fridge – not suitable for freezing
INGREDIENTS • • • • • • • • •
16 watercracker biscuits (optional) 8 pieces of smoked salmon (approximately 400g) 100g reduced-fat ricotta cheese 60g extra light cream cheese 1 teaspoon capers 1 teaspoon lemon juice 0.25 teaspoon lemon zest 1 teaspoon spring onions or chives, chopped 1 teaspoon dill, chopped
METHOD 1. Lay the salmon out on a clean board 2. Place all remaining ingredients (except the biscuits) into a bowl and mix well 3. Spread 1 tablespoon (20g) of the mixture over each piece of salmon 4. Roll the salmon up into a tube 5. Serve as fingerfood or on individual plates with water crackers 6. The salmon roll can also be cut up and put onto water crackers.
Recipes sourced from LoveYourLiver.com.au hep.org.au | Hep Review 47
Apple Ginger Juice Serves: 2 3 apples 2cm piece of ginger, peeled 1/2 small lime or lemon 1/2 cup wa1er 1/2 cup parsley Cut the apples into pieces and remove the core. Process all ingredients through a juicer. Pour juice in serving glasses. Serve immediately, consume within 10 minutes.
Greek spinach pie Serves: 6
INGREDIENTS • • • • • • • • • •
1 packet of filo pastry A little olive oil to brush filo 2 bunches of English spinach or 1 bunch of silver beet 200g fetta, crumbled 250g low-fat ricotta 3 eggs, lightly beaten 2 tablespoons fresh dill, chopped 3 tablespoons fresh mint, chopped 8 shallots, finely sliced 1/2 cup of pinenuts
METHOD 1. Remove the stalks and tough white centre of the spinach leaves and slice 2. Blanch the spinach in a pot of boiling water until wilted 3. Drain and cool, squeeze out excess water and chop the spinach again 4. In a large bowl, mix together the spinach, fetta, ricotta, beaten eggs, herbs and pinenuts 5. Season with freshly ground black pepper and a little salt - the fresh herbs will provide lots of flavour reducing the need for salt 6. Spray or brush the filo sheets on each side with olive oil 7. Line a baking dish with half the filo sheets 8. Pour the filling over the pastry and place the remaining filo sheets over the top 9. Tuck the pastry down well around all sides 10. Bake in a moderate oven for 40 minutes 11. Allow to stand for 5 mins before cutting
48 Hep Review #91 | July-November 2016
AVOCADO FETA DIP
Baked apples with custard Serves: 4
BAKED APPLE INGREDIENTS • • • • • •
4 Granny Smith or Mt Fuji apples 1/2 cup walnuts, chopped 4 tablespoons maple syrup 1 tablespoon water 1 dessert spoon low-fat spread 1 teaspoon cinnamon
Serves: 4-8 1 avocado - peeled and diced 4 oz feta cheese 1 lemon - juiced 2 or 3 scallions - roughly chopped 1 large handful of parsley Dash of black pepper to taste Add avocado, feta cheese, juice of one lemon, scallions, parsley and pepper to food processor. Pulse food processor until desired consistency. Serve with healthy bread chunks.
CUSTARD INGREDIENTS • • • • •
600 mls skimmed milk 2 level tablespoons cornflour 1 tablespoon sugar 2 egg yolks, beaten a little 1/2 teaspoon vanilla extract
METHOD 1. Wash the apples and remove the cores 2. Make small slits in the apples on the top and the bottom where the core was removed 3. Mix together the walnuts, sultanas and cinnamon 4. Fill the cores with the fruit and nut mix 5. Pour 1 tablespoon of maple syrup inside each apple 6. Place the apples in a casserole dish with the water and low fat spread 7. Bake with the lid on for approximately 25 minutes, or until the apples are tender 8. Meanwhile, make the custard by heating almost all of the milk in a small saucepan 9. Mix the remainder of the milk with the cornflour and sugar until smooth, then stir in the beaten egg yolks 10. Just before the milk comes to the boil, remove from the heat and stir in the cornflour mixture 11. Return to the heat, stirring until the mixture boils and thickens 12. Simmer, and continue stirring until the custard is cooked through 13. Remove from the heat and stir in the vanilla extract 14. Pour into a jug and cover until ready to serve
hep.org.au | Hep Review 49
THREE YEARS OF AMAZING OUTCOMES G
oing Viral NSW’s current funding agreement finishes in June this year after three very successful years delivering the youth focused hepatitis C prevention program.
The need for a youth centred program addressing prevention issues was driven by research identifying 18 years as the average age that injecting begins, and that 18 months was the average window of time between first injection and contracting hepatitis C. In 2012, five local health districts (LHD) - Far West, Nepean Blue Mountains, South Eastern Sydney, Sydney, and Western Sydney - entrusted Hepatitis NSW with their Hepatitis C Education and Prevention (HCEP) money. They combined resources and knowledge so Hepatitis NSW could then implement and organise the project in each LHD in the most efficient way. In 2013 Going Viral NSW was launched. This was Hepatitis NSW’s first formal hep C transmission prevention program. Going Viral NSW was an innovative hepatitis C youth transmission prevention program, underpinned by the State and Federal Hepatitis C strategies. It was a scale-up of a pilot project that was delivered with great success in the South Eastern Sydney LHD in 2012. The collaboration of the five LHDs in addition to Yfoundations, NUAA and Hepatitis NSW meant optimal value for money through the bringing together of expertise and pooling of resources. The logic of combining the Hepatitis C Education and Prevention (HCEP) funds and allocating a co-ordinating role to the not-for-profit organisation, Hepatitis NSW, allowed improved delivery and reach, maintained flexibility through reduced bureaucratic processes,
50 Hep Review #91 | July-November 2016
developed new partnerships and strengthened existing ones within the hepatitis C prevention sectors, with a focus on youth services. Young people are a priority for hepatitis C prevention and education programs due to potential exposure to activities where blood may be shared; unsterile tattooing or body piercing and sharing injecting equipment including steroids. Going Viral NSW aims were: n to increase the capacity of youth organisations working with ‘at risk’ young people to engage with their young clients on topics like hepatitis C prevention and transmission risks; n to grow and nurture partnerships between youth services and NSP/ hep C prevention services via NSP staff delivering a section of the training and then an activity where youth workers attend NSPs and utilise the services like they were clients; n to increase access to hepatitis C primary prevention services for young people by working to reduce barriers to accessing services for young people; and n to increase access to NSP services among young people who inject drugs or who are engaging in behaviours that cause them to be at risk of exposure to hepatitis C. Going Viral NSW was able to meet these aims through the training delivered in each participating LHD and then the grant projects delivered by the attending youth services.
Some of the images from a resource developed to help course participants rate risks of hepatitis C transmission
“ Each LHD has a local working group consisting of the LHD HARP Advisory Group member, a Hepatitis Going Viral NSW Project Officer, and local NSP/youth sector representation. Local working groups meet regularly during the lead up to project implementation, and continue to support grant development and implementation for the life of the project. This structure allowed for a great deal of practical support offered to the services who undertook a grant project as part of the Going Viral NSW ‘third stage’. The dedication and skills of each LHD’s staff enabled Going Viral NSW to reach well over 80 organizations and 1,360 young people since its implementation in July 2013. During the second half of last year, the combined efforts of this partnership enabled Going Viral NSW to deliver seven education sessions to 80 individuals, which is the greatest number of participants Going Viral NSW has ever seen in one training round; in fact exceeding participant numbers of 2014-15 by 63%. Course attendees came from 24 different organisations that all work with young people. Out of the 24 organisations, 17 grant applications were developed and approved. Since its inauguration grant funded projects have provided hepatitis C, blood borne viruses, safe piercing, tattooing and injecting education directly to nearly 1,400
During the second half of last year, the combined efforts of this partnership enabled Going Viral NSW to deliver seven education sessions to 80 individuals, which is the greatest number of participants Going Viral NSW has ever seen in one training round...”
young people and indirectly to many more through the physical or online dissemination of resources produced by the funded projects, through media campaigns, and through public hepatitis C messaging. Overall, building capacity with organisational staff to address issues related to hepatitis C with the young people they work with has been hugely successful. Workshop participants’ knowledge increased significantly, as misinformation about hepatitis C reduced from up to 73% of wrong answers down to 6%. More importantly participants’ confidence to engage with their clients about hepatitis C has increased tremendously, jumping from an average “poor” competence level to “very good”. Going Viral NSW has shown, many times over, the great number of committed youth workers there are who want to engage with young people around hepatitis c prevention and the amazing outcomes they can achieve when they are provided with the education and support they need.
hep.org.au | Hep Review 51
HORRORSCOPES with Madam Grace, AstroChick
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)
Service with a smile needs to be your priority, Aries. This might seem a bit strange if your work is generally regarded as one of the “grumpy professions”; for example, smiling while you hand out a parking ticket might not go across very well with the person being “served”. The trick here is to learn the art of the inward smile so you can grin without also getting in a fight.
For too long now you have been caught up in your own efforts and awesomeness; but it may surprise you to know there are many other people involved in like-minded efforts of awesome. They are your tribe and your tribe needs you, whether they realise it or not. Whether your “thing” is environmental rescue, religious fervour or grammatical pedantry, there is a tribe out there for you.
Lights, camera, action! No, you haven’t accidentally stumbled onto a movie set, Leo (unless you work in movies, in which case, you have); but it may feel like your life has become a drama for the world’s entertainment. Whether you find yourself in a rom-com, a teen flick or an action blockbuster give it your best shot – you might pick up an Oscar for your efforts.
No person is an island, Virgo—not even your self-sufficient sign. Hop into your boat and head on over to the mainland to experience some real human support and interaction. Chances are you’ll soon be reminded of why you prefer your “island” to the “mainland”; just make sure you stock up on your provisions before you hightail it back to your righteous rock of independence.
Gemini (May 21 - June 20)
Libra (September 23 - October 22)
Cancer (June 21 - July 22)
Scorpio (October 23 - Nov 21)
Turn your grandest goal into a tangible and profitable reality but follow a sound financial strategy. Swedish business theorists ABBA recommend, “Money, money, money, always sunny”. Financial advisers The Flying Lizard say, “The best things in life are free but you can give them to the birds and bees” and economic big wigs Pink Floyd suggest, “Grab that cash with both hands and make a stash”.
Get out of your shell and explore new terrain! Sometimes it’s too easy to stay bunkered down with familiar faces and landmarks, but doing so means missing out on opportunity after opportunity as life passes you by. Go exploring! Check out your neighbourhood! Please note, if your neighbourhood includes a shooting and/or bomb range it is probably safer to remain in your shell.
There won’t be much time for rest, so you’ll want to stick closely to your priorities. Lists can help but only as long as you write down actual priorities and not a page of doodles. As always, Libra, balance is the key to your success. Too much or not enough of one priority can lead to disaster, things spin out of control and crash and burn. Maybe you should have kept to the doodles after all.
You may have a reputation as one of the zodiac’s control freaks... not that anyone would ever dare say it to your face! Even so, maybe it time to stop chanelling your inner scorpion? Can you lower your barbed tail for just a moment and just let all us other so called “losers” bumble through the disorganised chaos of our otherwise “aimless” lives? No? Oh well, it was worth a try!
What will it take to bring sacredness to your sanctuary, Sagittarius? Maybe you like the simple approach and scented candles will suffice? Or perhaps you need to knock down a wall and install a spa with a fountain statue of your personal deity/spiritual guide? Regardless, if you are renting just make sure your solution resonates with the aura of your lease agreement.
You’re ready to duck off the grid and unwind for a spell. Like all good Capricorn’s you are well prepared. Sure, some people might chortle at the secure concrete bunker you’ve been building and stocking piling with provisions and medicine and arms and air filters and a water purifier and generator. They’ll be laughing on the other side of their face come the zombie apocalypse.
Aquarius (January 20 - Feb 18)
What is it that truly inspires you to share? There’s a whole world out there waiting to receive your gifts, your kindness, your wisdom and, primarily, your money. In fact you don’t need to be an astrologer to know there are between three and thirty emails in your inbox right now making requests for your generosity; mine is the one with the subject heading “The $$tar$$ Reveal All.”
Pisces (February 19 - March 20)
Your passions and solo endeavours are in the spotlight! If the thought of an audience watching your every move is too daunting don’t be koi. You might flounder at first but don’t carp on about it, just know that if you mullet over you’ll sea any fin is possible and you cod be a star, Fish. If you reveal your sole to the world you will scale the heights and everyone will be herring about you.
please note that these horrorscopes are like election promises: neither real nor accurate. 52 Hep Review #91 | July-November 2016
CROSSWORD Find solutions at hep.org.au/news-stand
ACROSS
1. Reuse; reprocess (7) 7. Do this to warm up cold food (6) 8. Rough first version of text or drawing (5) 9. Soaked up water or information (8) 10. Fluffy rain bringer (5) 11. Thing; unit (4) 13. Unenergetic; limp (8) 18. TV’s talking horse, Mister .. (2) 19. Formerly Persia (4) 20. Australia is one. As is Peru, India, etc (6) 21. A house for farm animals (4) 23. Plump, purple skinned fruit (4) 24. Bite; pinch (3) 26. A lawn is like this, as is a Dallas knoll! (6) 27. Superman, Man of ..... (5)
DOWN
1. Mockery; derision (8) 2. Kids draw with these coloured sticks (7) 3. A fortress or castle (7) 4. Rub out (5) 5. A need to drink; a strong desire (6) 6. Students do this if they want to pass (5) 11. Exists! (2) 12. Hearing organ (3) 14. Concept; lightbulb moment (4) 15. Ball game (6) 16. Ouch! Bees have one (5) 17. Dog, hippo, wombat, etc (6) 19. Enter data (5) 21. Ginormous (3) 22. Ribonucleic acid (3) 25. Introduces an afterthought (2)
hep.org.au | Hep Review 53
CLINIC LISTINGS C - Hep C treatment & monitoring B - Hep B treatment & monitoring F - Fibroscan
MONITOR MANAGE TREAT New Hep C Treatment Info The new direct actind anti-viral (DAA) treatments for hepatitis C can be prescribed by GPs and by medical specialists working in liver clinics. The same is true for hepatitis B treatments. This is a list of all liver clinics in NSW. To find GPs who prescribe the new hep C DAAs, please see the Hepatitis NSW Directory.
CLINIC
CONTACT
The Albion Centre, Surry Hills
02 9332 9600
Bathurst Liver Clinic, Bathurst Hospital
02 6330 5346 0407 523 838
Bega District Hospital Interferon Treatment Unit
02 6492 3255
SERVICES C
B
F*
C
B
F
C
B
F
*Fridays only
HEPATITIS INFOLINE 1800 803 990 INFO, SUPPORT, REFERRALS Treatment through Bankstown B FHospital Outpatients Clinic
Burwood Endoscopy Centre
02 9745 3988 endoscopy@ iinet.net.au
C
Canberra Gastroenterology Hepatology Unit
02 6244 2195
C
B
F
Canterbury Hospital – Outpatients Liver Clinic
02 9767 6372 legan@med. usyd.edu.au
C
B
F
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
hep.org.au/services-directory
54 Hep Review #91 | July-November 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*
F
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
*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 assess whether treatment inside prison or outside (after you’re released) is your best option. If treatment inside prison is your best option, they will do some tests and assessment, then 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.
The new hep C treatments are available to prisoners. 56 Hep Review #91 | July-November 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
C
02 6362 5055
B
F
HEPATITIS NSW DIRECTORY
Search for doctors near your local postcode who are able to write prescriptions for new hepatitis C treatments & for local chemists who plan to fill scripts. Over 100 doctors and 250+ chemists listed state-wide!
hep.org.au/services-directory hep.org.au | Hep Review 57
58 Hep Review #91 | July-November 2016
Let's Talk about:
Positive Psychology by Lila Pesa, Hepatitis NSW
I
n this issue we finish exploring essential components of the PERMA model (see diagram next page) for Positive Psychology.
In the last two articles we looked through other important aspects of this model: n Positive Emotions n Engagement/ Flow n Relationships Please, see Hep Review issues ED90 (February 11, 2016) and ED89 (October 8, 2015) if you have missed the beginning of these series. We are now going to unpack the last two sections of this model.
MEANING / PURPOSE AND ACCOMPLISHMENTS
Meaning / Purpose is important because it provides both a stable foundation and sense of direction in life. Pursuing meaningful activities has been found to be more strongly related to happiness than pursuing pleasurable ones (although they can be or become both – meaningful and enjoyable!). Image: Jocelyn Kinghorn | flic.kr/p/i7rPhs
We are at our best when we dedicate our time to something greater than ourselves. This could be religious faith, community work, family, a political cause, a charity, a professional or creative goal. Studies have shown that people who belong to a community and pursue shared goals are happier than people who don’t. It is also very important to feel that the work we do is consistent with our personal values and beliefs. From day to day, if we believe our work is worthwhile, we feel a general sense of well-being and confidence that we are using our time and our abilities for good. Examining our own true values can be a very helpful activity to identify what has meaning to us and what our true priorities are. What do you value most in this world? It might be family, or learning, your sense of freedom and independence, or your faith. Perhaps you feel strongly about helping
hep.org.au | Hep Review 59
“
Much of the best work in the counselling room is to amplify strengths rather than repair the weaknesses of the clients… to help individuals be the authors of their own evolution.”
Positive Emotion
Accomplishments
Martin Seligman, American Psychologist, 2000
Meaning/ Purpose
disadvantaged children, or protecting the environment. Once you have identified what matters most to you, it is possible to find some like-minded people and begin working together for the things you care about. You can find meaning in your professional life as well as your personal one. If you see a deeper mission in the work you do, you are better placed to apply your talents and strengths in the service of this mission.
ACHIEVEMENT /ACCOMPLISHMENT
This is another broad category used in this model, which includes everything from achievement, success and mastery at the highest level possible to progress towards goals and competence. To achieve well-being and happiness, we need to look back on our lives and acknowledge our achievements, so far. Creating and working toward goals helps us anticipate and build hope for the future. Past successes make us feel more confident and optimistic about future attempts. There is nothing bad or selfish about being proud of our accomplishments. When we feel good about ourselves, we are more likely to share our skills and strengths with others. We may be motivated to work harder and achieve more next time. We may even inspire the people around us to achieve their own goals. By saying that - it is important to set ourselves with tangible goals, and keep them in sight. In Positive Psychology counselling we are encouraged to identify our ambitions and cultivate the strengths that we need in order to reach
Relationships
them. Regular counselling is a great way to keep focused on our long-term goals and acknowledge the little successes along with the big ones. It is vital to cultivate resilience against failure and setbacks. Success doesn’t always come easy, but if we stay positive and focused, we don’t give up when adversity strikes. Hope you have enjoyed reading and exploring with us some of the possible benefits of Positive Psychology. There is growing evidence and strong emphasis on importance of emotional and psychological health, which is really at the core of our physical health, in scientific and popular psychology literature around the world. We are capable of making a major contribution to our own recovery and healing and it is good to know that we do not have to do it alone as there are peer and professional services working in assisting us on our journeys to feeling better and empowering us to take the lead in our path to better health and well-being.
RESOURCES
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 positivepsychologyprogram.com
LET’S TALK COUNSELLING SERVICE Highly skilled, hepatitis-informed counsellors supporting clients affected by viral hepatitis living in NSW by delivering telephone, Skype and face to face counselling sessions. Our service is free.
More information: Hepatitis Infoline: 1800 803 990 Counselling Coordinator: 02 8217 7717 60 Hep Review #91 | July-November 2016
Engagement/ Flow
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Shoutout letters to inmates from their friends and family to give us a little hope and love n Try to help all in jail and tell them about hep C, or getting a needle exchange in all jails to stop hep getting passed on n Put addresses of clinics so we can write to them as it's hard to ring them when you're a prisoner n Every different issue focusing on one Correctional Centre at a time. Discrimination in jails or in Community Stories that matter n I'm currently at Goulburn gaol (maximum security). I go to the main clinic daily for my meds so I have access to this magazine. 98% of the gaol don't have access to main clinic which means no mag n Maybe a promotional look at hepatitis, targeting all inmates, m/f, ethnic/ age/visitors etc n Possibly a few more reader's stories. I really empathise with them.
hep.org.au | Hep Review 61
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62 Hep Review #91 | July-November 2016
Alcohol and Other Drugs Support & Information Services
GET BLOODY SERIOUS!
A workshop (mostly) about hep C
THINK. PLAN. ACT A comprehensive workshop that will help you work better with your clients around hep C
Upcoming workshops n 29 July 2016 n 28 October 2016
Register: 1800 803 990
working towards a world free of viral hepatitis
NUAA
People who inject drugs and want to access peer based info and support can call NUAA (the NSW Users & AIDS Association). phone: 8354 7300 (Sydney) 1800 644 413 (NSW regional)
ADIS
NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Call the Alcohol & Drug Information Service (ADIS) for assistance. phone: 9361 8000 (Sydney) 1800 422 599 (NSW regional)
FAMILY DRUG SUPPORT
FDS provides assistance to families to help them deal with drug issues in a way that strengthens family relationships. phone: 1300 368 186