HEP REVIEW Edition 77
Winter
June 2012
py Free co e tak Please C me: Community action on hep C Triple treatment Medicare listing update Serving city streets: A day in the life of St Vincent’s viral hepatitis clinic Taking treatment to the people: the Newcastle Pharmacotherapy Service Hep Review Hep B vaccine recommended for diabetic adults
Edition 77
June 2012
1
promotion
community action on hep C C me is a pioneering, community advocacy project which recruits, trains, connects and supports people across NSW who want to make a difference in their local community. David Pieper, Coordinator of the C me Project speaks out... “Advocacy is about small actions by individuals that can create big wins for communities. It’s about me taking action on issues that are close to my heart and affecting others in my community.” I am outraged at the level of stigma and discrimination toward people with hep C in healthcare settings, in the workplace and in the wider community. I am alarmed at the level of hep C in prisons and by the absence of harm reduction iniatives to control it. I can’t believe that it’s illegal for people who inject drugs to distribute sterile needles and syringes to others. I am appalled that the federal government is holding back on granting PBS approval for the new drugs to treat hep C – drugs that will halve the length of treatment for most people and significantly increase their chance of success on treatment. I am frustrated that blood borne viruses education is not included in the core curriculum in all public schools in NSW, despite the fact that the average age people start injecting drugs is 19. I’m standing up for what’s right and reasonable. For what makes sense good economic sense and for my rights as a citizen of NSW. C me is looking for Community Advocate volunteers to champion the project across the state in all Local Health Districts.
2
www.hep.org.au
Who’s w ith me? If you ar e an enth usiastic commun icator, w ith the potentia l to be in s pirationa and willi l ng to be t r ained up help deli ver the C to m e p r oject, we want to hear f rom you . Email m e on: dpieper@ hep.org.a u or call 02 9332185 3
“Telling my story about how treatment with telaprevir helped me clear hep C has opened lots of doors in my local area. At a local level, people in my community can see the human side of this virus and that helps reduce stigma and discrimination.” Kerri-Anne Smith, NSW
contents
JOIN US, GO TO hep.org.au/c-me
Do you care about social justice, equality and inclusion? It’s time for us to stand up and say to our communities across NSW, “We deserve better.” • We’re offering free training on all the hep C issues including: stigma and discrimination; living with the virus; who’s who in the health sector as well as training in effective campaigning, organising meetings, effecting change and media speaking. • Together, we’ll be lobbying and influencing stakeholders, speaking to the media, attending local meetings and advocating on behalf of people affected by hep C.
NSW news
7
Australian news
9
World news
12
Features C me: Community action on hep C 2 Hep C epidemic calls out for cure 20 Serving city streets: A day in the life of St Vincent’s viral hepatitis clinic 24 Investigating General Practice and hep B 28 An overview of emerging hep C treatments 30 Cuts and comebacks: Greek harm reduction 33 Taking hep C treatment to the people: the Newcastle Pharmacotherapy Service 36 Healthcare clinicians and workers need to speak out on illicit drugs 40 Farewell to Kerry Walker 41 Obituary: Penny Scott 1975-2012 57 Opinion Portugal’s drugs climate, 10 years on
51
My story Charlie’s story: Betty Blue inspired bluebird tattoos Catherine’s story: a country-city commute
22 32
Research updates What is killing people with hep C? 58 Hep C treatment cost-effective for people who inject 58 Delivering hep C treatment within a methadone program: implications for program replication 59 Alcohol treatment boosts hep C cure rates 59 BBQ food link to silent epidemic of fatty liver 60 3D model reveals enzyme’s attack 60 Staying safe from hep C 60 Compound kills liver cancer 60 Discovery provides blueprint for new hep C drugs 61 Drug use increasingly associated with microbial infections 61 Milk thistle disappoints in hep C study 61 Regular features Hepatitis NSW service promotions 21 Hep Chef – Marinated baked salmon quinoa pomegranate salad 43 Reader survey 45 Factsheet – Staying healthy 49 Hello Hepatitis Helpline 50 Hepatitis NSW service promotions 52 Membership 54 Interferon-based treatment 62 Complementary medicine 63 Support and information services 64 Back cover – Tattoo project: Artsafe 68
Hep Review
Edition 77
June 2012
3
editor’s intro
T
his is a really busy and exciting time. Here in the office, we have had coming and goings with several staff changes (see pages 9, 41 & 44). Additionally, Hepatitis NSW has begun work on three new projects. Our Online chat provides an easy and safe place for people to chat with our Helpline staff. Our exciting C me project will recruit and train people across NSW to promote hep C change in their local region. Our Live well project involves groups of people working together to better manage their health; an approach called “chronic disease self management”. These projects offer a lot of potential across NSW for improving the lives of people living with hep C. They also offer potential for greater engagement between our organisation and the eighty thousand plus people in NSW living with hep C.
Hepatitis NSW is celebrating 20 years of service to NSW. Here are snapshots of some staff, present and past. Apologies to pre-digital era staff who are not shown.
Also, we’ve been working on two major evaluations: one of Hep Review magazine, and one looking at our website. I think we’ll see ongoing improvements as a result of these project evaluations. How else can we continually improve our magazine? Please tell us via the reader survey form (page 45). On that note, congratulations to Shane, of Greystanes, NSW, the winner of our $50 reader survey prize for Edition 76. Paul Harvey Editor/Production
Weblink of the month
In 1971, President Richard Nixon declared a “war on drugs”.Today the illegal drug trade is a global industry worth hundreds of billions of dollars. The ABC’s Rear Vision looks at the effects of prohibition and attempts to overcome its inherent counter-productivity: http://tinyurl.com/7z9nwuj or listen now: http://tinyurl.com/6rwsqmd
Hepatitis NSW is proud to acknowledge Aboriginal people as the traditional owners and custodians of our lands and waters.
4
www.hep.org.au
Cover image by Syre.O via www.flickr.com Unless otherwise stated, people in our images are not connected to hep C.
promotions
ONLINE
chat Online chat service
H
epatitis NSW has launched a brand new online chat service!
You can now chat instantly with one of our Helpline workers via www.hep.org.au Just click the blue Live Support button at the top of the site, answer some confidential questions for our stats and you’re on your way. There’s no need to sign in or download any new software. Simple! You can use the online chat service between 9am-5pm weekdays (except Thursdays when it is available from 1-5pm). The service provides free information, support and referral to anyone in NSW.
For info, support and referral online
>>
Seeking your stories Personal stories provide balance to our other articles. Please consider telling us your story. Published stories attract a $50 payment. Your name and contact details must be supplied (for editorial purposes) but need not be included in the printed article. Please advise if you want your name published. Articles should be between 400 and 800 words. Publication of submitted articles is at the discretion of the editor.
Hep Review
Edition 77
June 2012
5
promotion
letters
ALBION STREET CENTRE EDUCATION COURSES Nutrition, Hepatitis C & Injecting Drug Use 15 November 2012 A one day workshop providing an overview of the impact of injecting drug use, hep C and related diseases on nutritional status. Practical strategies for enhancing nutritional status including healthy eating and symptom management will be discussed and complementary therapies reviewed. A workshop suitable for needle & syringe program workers, nurses, social workers, psychologists, drug & alcohol workers and those who work in liver disease and/or infectious diseases. Course Fees:
$165.00 including GST
Hepatitis for Health Care Workers – Online Course 10 September – 26 October 2012 This is a 7 week course which will be conducted entirely on-line through Moodle. It is estimated that that weekly reading and course activities will take around 1-3 hours to complete. There will be no “set time” to be on-line. Participants can complete activities at a time that suits them. This course provides an overview of current information on viral hepatitis with a focus on hepatitis C. It is suitable for clinical and allied health workers who provide services for people living with or at risk of viral hepatitis. Topics covered include: Overview of heps ABC; Management of chronic hep C; Coinfection; Pre-test counselling (introduction); Psychosocial issues; Hep C and discrimination; Nutrition and hep C; Management of Occupational Exposures. Course Fees:
$275.00 including GST
Applicants may be able to obtain funding from their area HARP manager. For enquiries or to register, call Albion Street Centre Education on: Tel: (02) 9332 9720 Fax: (02) 9360 4387 albeducation@sesiahs.health.nsw.gov.au
6
www.hep.org.au
Butterflies Butterflies are a type of needle that are sometimes used by people when they inject drugs. They have been a huge controversy in NSW. For ten years NSPs in NSW have not been able to provide them, so methadone injectors have to get them from a chemist. As there are only about six chemists in Sydney that sell butterflies, this leads to re-use of equipment and vein loss. Many injectors inject into their groins which causes ulcers, infections and can even result in the loss of a leg. The message it sends to me is it’s okay to inject any other substance, but not methadone. As a methadone injector/butterfly user I feel discriminated against and I am really angry about it. Every other state has butterflies. They actually followed NSW’s lead! Injecting methadone is a cheaper, safer option. I haven’t overdosed because I know the quantity of what I’m taking. I am one of few dependant users with a mortgage – methadone injection has left me with enough money to afford one. For the last 10 years, I have pushed the authorities, asking what they are doing about it. For 10 years, the standard reply is “don’t rock the boat, we almost have them back and you are going to ruin it if you start shooting your mouth off.” It’s a reply that is wearing thin for me. • Ann S. NSW
Image courtesy of Google Images
B Positive takes a stand New South Wales – Cancer Council NSW’s B Positive program participated in the Bring It On Festival, an annual youth event held at the Fairfied City showground, attracting more than 6000 people. The B Positive program was designed to increase awareness and knowledge of hep B in communities at high risk of contracting the disease. At our stall, we invited participants to answer a knowledge survey on hep B. Prizes and hep B information were distributed for correct answers. Survey results indicate that while festival goers are generally informed about liver health, future efforts need to concentrate more towards filling in noticeable knowledge gaps about hepatitis B symptoms and methods of prevention. Greater public awareness of hepatitis and liver cancer is needed to prevent needless deaths from disease complications. It is estimated that without adequate medical care more than a quarter of those with chronic infection may die of hepatitis B-related complications. • For more information, contact Debbie Nguyen (Cancer Council B Positive Community Educator) on 02 9334 1708.
news Governer declares Clinic 180 open for business New South Wales – The Kirketon Road Centre (KRC) has a new public health facility following the official opening of “Clinic 180” at 180 Victoria St, Potts Point, by Her Excellency, Professor Marie Bashir, Governor of NSW. Clinic 180 provides an important opportunity to target high-risk hard-to-reach populations who do not access more traditional health services during normal business hours. Nurse-led clinics will operate on the ground floor and provide a range of services on a drop-in and appointment basis. • KRC press release (19 April 2012).
Hepatitis Awareness Week 2012 New South Wales – Hepatitis NSW is in full swing planning activities for NSW Hepatitis Awareness Week (23-29 July). As in previous years, Hepatitis NSW is running the community grants program to support community organisations around the state to hold awareness raising events. In partnership with Local Health Districts, Hepatitis NSW has developed a campaign to run during NSW Hepatitis Awareness Week which will include street banners, t-shirts, posters, stickers and balloons featuring a big “C”, and posing the question “What do 1 in 100 people in Australia have in common?” Hepatitis NSW is also looking forward to assisting Hepatitis Australia with the high profile “Love Your Liver” World Hepatitis Day Launch event to be held in Martin Place in Sydney on Friday 27 July. Join us on World Hepatitis Day, Saturday 28 July and help set a new Guiness world record. Phone 1800 803 990 for details. • Hepatitis NSW Hep Review
Edition 77
June 2012
7
news New hep B resources
NSW GP training
New South Wales – Liverpool Hospital Liver Clinic is soon to launch its hep B easy-read patient information resource. It is a handy booklet that explains the complex various stages of hep B disease progression and clinical management. Another hep B resource, HBV – It’s Family Business, is currently under development by the Multicultural HIV & Hepatitis Service and will be available in seven community languages. • Hepatitis NSW
NSW hep B and C strategies update
The sessions were held over dinner and included input from a local Gastroenterologist, and a CNC and RN from the local liver clinic. The sessions evaluated well and Hepatitis NSW will carry out more GP training throughout the year. • Hepatitis NSW
Drawing Them In
New South Wales – The third hep C and first hep B strategies are currently under development by the NSW Ministry of Health. These documents guide the overall statewide responses to these epidemics and involve government, medical, public health and community goals and responsibilities. It’s likely that stakeholder consultations will take place on in June this year. At this stage, we understand that the hep B strategy will attract no additional targeted funding. • Hepatitis NSW
New South Wales – Hepatitis NSW is now able to provide accredited GP training in NSW through our “Viral Hepatitis – The Basics” course. It has been held in Tamworth and Armidale in North-West NSW in collaboration with the Hunter Rural Division of General Practice.
New South Wales – We recently held a set of successful Drawing Them In workshops in Newcastle for Transmission Magazine. We conducted two education sessions and a group exercise with sex workers who are clients of ACON, Newcastle. The end result was the storyline for our Edition 12 Transmission Magazine comic. These creative workshops give groups from our priority populations a forum to contribute authentic characters, settings and ideas to the easy-read magazine. Do you have any ideas for our Drawing Them In workshops? Email your comments to rshortus@hep.org.au • Hepatitis NSW
Would you like to help with hepatitis C research? You can if you have recently contracted hep C Research Study Treatment of recently acquired hepatitis C virus infection (ATAHC II) The Kirby Institute (formerly the National Centre in HIV Epidemiology and Clinical Research) is running a hepatitis C study for patients who have acquired hepatitis C recently (in the last two years). ATACH II aims to explore the best treatment strategy for patients with recently acquired hepatitis C infection. You can choose to receive treatment or not if you decide to help. There are clinics participating in the study in Sydney, Melbourne, Brisbane and Adelaide. Contact Barbara Yeung at the Kirby Institute on 02 9385 0879 or byeung@kirby.unsw.edu.au to find out about the study or to find your nearest site. The study has been approved by the St Vincent’s Hospital Human Research Ethics Committee
8
www.hep.org.au
news
Staff changes at Hepatitis NSW
C Me, Hear Me DVD resource
New South Wales – We say goodbye and heartfelt thanks to Damian Young (Organisational Services Officer), Stephen Scott (Coordinator Client Services), Althea Mackenzie (Coordinator Education and Development) and Kerry Walker (Project Officer Aboriginal Projects) see page 41.
Australia – This DVD has been produced by the NSW Workforce Development Program; a part of ASHM (Australasian Society for HIV Medicine) for the community and health workforces. The stories on the DVD can be used to become familiar with what it is like to live with hep C.
We warmly welcome David Pieper (Coordinator C-Me Community Advocacy Project). Katia Chehade (Organisational Services Officer) and Kirsty Fanton (Project Officer Client Services). See page 44. At time of going to print, we welcome Rob Wisniewski to the newly created position of Programs Coordinator, a merging of our Client Services Coordinator and Education & Development Coordinator positions. • Hepatitis NSW
It is hoped the personal stories will increase awareness and understanding of hep C, dealing with symptoms, considering and managing treatment, stigma and discrimination. All segments can be viewed free online at http://tinyurl.com/866ltvl Hard copies of this 50 minute DVD cost $60, or are free if you are based in NSW. Visit http:// tinyurl.com/72ro9je to purchase hard copies. • Abridged from www.ashm.org.au
Triple treatment Medicare listing update
ASHM hep B nursing course gets a re-run
Australia – Both telaprevir and boceprevir have now been approved for use in Australia but have yet to be recommended for Medicare-subsidy by the Pharmaceutical Benefits Advisory Committee. If this recommendation is made, it will then be considered by the Federal Cabinet (a grouping of senior ministers who form the highest level of federal government decision making).
Australia – With over 100 nurses on the waiting list for the first ASHM/AHA (Australasian Society for HIV Medicine & Australasian Hepatology Association) Hepatitis B Nursing: Advanced Nursing Management and Care course, it was no surprise all places were gone within 48 hours of registration opening.
Hepatitis NSW is hoping for fast-track Medicare listing by December 2012 and we’ll be working with the community via the C-me project to engage support for cabinet approval.
ASHM now has funding to run the course twice more this year. To add your name to the waiting list, contact Emily Wheeler on 03 9341 5244. • Abridged from BBV News (5 April 2012).
• Hepatitis NSW
Hep Review
Edition 77
June 2012
9
news Multicultural hepatitis website Australia – The Multicultural HIV and Hepatitis Service (MHAHS) website is now home to more than 1,000 pages of HIV and hep C information, in plain-English and more than 20 community languages. Multilingual info on chronic hep B will soon be added to the website. Check it out by visiting www.multiculturalhivhepc.net.au • Abridged from ASHM email alert (20 April 2012)
Hepatitis Victoria and TasCHARD farewells
Report of the National Hepatitis C Treatment Forum Australia – In March 2012, Hepatitis Australia brought together community representatives, NGO partners, GPs, hepatology and infectious disease specialists and nurses, researchers and government representatives in a national forum. The forum participants discussed the evolution of hep C treatment in Australia and how Australia can best respond to ensure that, as a country, we reap the full benefits of the advances in treatment for the more than 220,000 people currently living with chronic hep C in Australia. The report from the forum can be accessed by visiting http://tinyurl.com/6wv2uan • Abridged from www.hepatitisaustralia.com
Australia – Hepatitis NSW pays tribute to Helen McNeill, CEO of Hepatitis Victoria who has moved on to head up Cystic Fibrosis Victoria. Helen played a key leadership role for years with both Hepatitis Victoria and nationally.
Hep B help website
We also say farewell to Keven Marriot who has played a leading role as head of the TasCHARD – the Tasmanian hepatitis peak body.
Australia – “Hep B help” is a website set up by the Victorian Infectious Diseases Reference Laboratory (VIDRL) to assist GPs diagnosing and managing patients with hep B. It includes a clinic finder to assist GPs and patients to link with hep B treatment services around Australia.
• Hepatitis NSW
Check it out here: http://www.hepbhelp.org.au/ • Abridged from BBV News (5 April 2012).
Featured resource: The Big Combo DVD
The Big Combo is an engaging doco-drama which personalises hep C treatment. Anywhere a DVD can be played has just become an outlet for hep C treatment related information and support. For free supplies across Australia, please use our faxback resources order form... http://tinyurl.com/7kctp25 10
www.hep.org.au
Improving access for marginalised populations Australia – In a recent article from Australian Family Physician, Dr Craig Rodgers makes recommendations to fellow GPs about how to improve access to disadvantaged people in their communities, including at risk young people, sex workers and people who inject. Check out the article by visiting http://tinyurl. com/7dkefan • Abridged from BBV News (26 April 2012).
AIVL policy update on hep C Australia – With recent developments in hep C vaccines and emerging treatments, AIVL (Australian Injecting & Illicit Drug Users League) has prepared a policy update focussing on varied topics related to hep C. The articles within this update cover: spontaneous clearance of hep C, factors associated with uptake of treatment (the ATAHC study, see page 8), vaccine preparedness, insight into hep C vaccine development and future hep C treatments.
news Hep C stigma in healthcare settings report Australia – Stigma and discrimination towards people with hep C has been associated with negative health outcomes for affected populations both within Australia and internationally. While policies, legislation and guidelines have been developed at State and Federal level to protect people living with hep C, evidence suggests that these people continue to report stigma and discrimination within health care settings. The NSW Ministry of Health funded ASHM and the National Centre for HIV Social Research to undertake a study to describe the current experiences of stigma and discrimination within health care settings for people living with HIV and/or hep C. The report also makes recommendations to address these issues. Hepatitis NSW applauds the NSW Ministry of Health for funding this valuable study. • Read the full report by visiting http://tinyurl. com/6nqo62f
Check it out by visiting: http://tinyurl.com/6rx576j • Abridged from BBV News (26 April 2012).
St Vincent’s viral hepatitis clinic Image courtesy of Google Images
St Vincent’s Hospital Viral Hepatitis Clinic, Darlinghurst, offers treatment for hepatitis. Featuring a fibroscan machine, the clinic offers a multifaceted approach to your liver care and viral hep treatment. • For further information, please contact Rebecca Hickey: ph 8382 3825 or rhickey@stvincents.com. au or Fiona Peet: ph 8382 2925 or fpeet@stvincents. com.au
Hep Review
Edition 77
June 2012
11
Australia – The Australasian Society for HIV Medicine (ASHM) has recently overseen an update of the National Hepatitis C Testing Policy. Professor Bob Batey, Director of ASHM’s Viral Hepatitis Program and Co-Chair of the policy’s Expert Reference Committee, says the updated policy gives health professionals quick access to relevant information that allows for better use of hep C tests in the first instance. “As a result, our patients will have better outcomes, with fewer repeat visits for additional testing to confirm a diagnosis,” Prof Batey said. “The updated policy includes a clear and concise statement of the tests available to make a hepatitis C diagnosis and how we can best use these tests to screen and define an infection. “Also included is assurance that Medicare funding is available for HCV RNA testing from the beginning,” he said. According to Australian Injecting & Illicit Drug Users League (AIVL) Executive Officer, Annie Madden, patient involvement in the testing process has been strengthened in the updated testing policy. “It’s great to see that the importance of ensuring the patient’s full and informed consent at each stage of hep C testing has been included in this policy update,” Ms Madden said. Hepatitis Australia Chief Executive Officer, Helen Tyrrell said: “While it is not intended to be a guide for people living with hep C, it is a good resource for health professionals seeking information or clarification at any stage in the testing process.” The policy – previously updated in 2007 – is now available from the Testing Portal managed by ASHM; an easy-to-access online gateway that contains all the relevant information for health practitioners who order hep C and other bloodborne virus tests and interpret the results. Enter testingportal.ashm.org.au/hcv in your web browser for more information. • Abridged from ASHM press release (7 May 2012) 12
www.hep.org.au
Image courtesy of Google Images
news Hep C testing policy updated
Hepatitis contest offers World Cup tickets India/Brazil – People in West Bengal, India, are being offered the chance to witness the World Cup. It is part of a campaign, Health in Brazil, 2014, organised by Liver Foundation, West Bengal and Brazil-based NGO C Tem Que Sabir C Tem Que Curar. A quiz competition on heps B and C among school children of classes IX to XII will see two members of the winning team travelling to Brazil. The lucky one among undergraduate students will be the winner of an essay writing competition on the subject. Postgraduate students will have to win a contest in making campaign materials like posters, folders and documentaries on preventing the diseases. Medical students will have to win a debate on the subject to clinch the trip. Liver Foundation West Bengal has formed hep B and C patient groups in the state for advocacy. The most empowered patient will get to visit Brazil. Apart from that, a journalist will also be selected on the basis of her/his work on the issue. “All forces need to be united to combat and prevent heps B and C. Ours is an effort to stress this during the World Cup football,” said C Tem’s Luis Francisco Gonzalez Martu who was in West Bengal to announce the campaign. • Abridged from indiatimes.com (10 Feb 2012) http://tinyurl.com/8ay85yp
Canada pays for boceprevir Canada – People across British Columbia living with hep C will now have Pharmacare coverage for a new drug that was approved by Health Canada nine months ago. The drug is called boceprevir (Victrelis) and Pharmacare coverage will be provided through the special authority program for patients with chronic, lab-confirmed hep C. New patients who have not received treatment before, as well as previously treated patients, will be eligible. The provincial government says it spends more than A$99 million a year on prevention, education and treatment of hep C. There are about 64,000 British Columbians diagnosed with hep C. • Abridged from ancouversun.com (26 Mar 2012) http://tinyurl.com/883hmdj In addition to British Columbia, Victrelis is also publicly funded in the Canadian states of Quebec and Ontario.
news Boceprevir funded in UK National Health Service UK – Merck’s new hep C drug Victrelis (boceprevir) has been recommended for use within Britain’s state health service, despite its hefty price tag. The National Institute for Health and Clinical Excellence, which often spurns expensive new medicines on cost grounds, said significant improvements seen with Victrelis made it a costeffective option. The drug is designed for use in combination with peginterferon alfa and ribavirin for patients with liver disease due to genotype 1 hep C, the most common form [in the UK]. • Abridged from medscape.com (8 Mar 2012) http://tinyurl.com/ctdbpfh Australians with hep C will have to wait until at least December 2012 to access government-funded boceprevir or telaprevir (see page 9.
We publish many more hep-related news items on www.hep.org.au For daily updates, follow us on Twitter or an RSS feed. Twitter – it’s as easy as “one two three!” 1) Open a Twitter account. 2) In Twitter, click on “find people” and search for “hepatitisNSW”. 3) Click on the “follow” button. 4) You’ll get a sentence and a link to each news item as they are put up daily on our website. On our site, you’ll get the link to the original news source. RSS – find out more: A bookmark on your browser toolbar will showcase links to our latest news items. http://www.hep.org.au/documents/UsingOurSocialMediaTools.pdf
Hep Review
Edition 77
June 2012
13
news New York City hits back at hep C USA – The NYC Bloomberg administration is launching a campaign to prevent the spread of hep C, The New York Post has learned. The Check Hep C initiative targets high-risk populations in Harlem, the South Bronx, central Brooklyn and parts of Staten Island and Queens. At-risk populations include people who have shared needles to inject drugs, people living with HIV and immigrants from countries with high hepatitis prevalence, including Egypt, Pakistan and the former Soviet Union. The city Health Department will award up to A$1.2 million in contracts to communitybased medical clinics that would provide free counselling and hep C testing. Patients will also be given a “health coach” to help navigate the medical system. And there will be a community-awareness campaign to reach those at risk. • Abridged from nypost.com (17 March 2012) http://tinyurl.com/7kmfhzn
HALC
legal centre is now able to offer free help with hep C legal issues
HALC is a community legal centre providing free advocacy and advice. We understand the needs of people with hep C and frequently provide assistance with: • Superannuation, insurance and employment • Privacy and healthcare complaints • Immigration, discrimination and vilification • Enduring Power of Attorney and Enduring Guardianship. We understand the importance of confidentiality and practice discretion. For more information, please visit our website www.halc.org.au or email us at halc@halc.org.au or telephone us on 02 9206 2060.
14
www.hep.org.au
California Governor expands access to syringes USA – Governor Jerry Brown signed two bills that will expand access to sterile syringes for people who inject drugs in an effort to combat the spread of hep C and HIV. The first bill allows people to buy syringes at pharmacies without a prescription. California was one of the few states where this was illegal other than in a few pilot programs. The second bill allows the state to authorise needle exchange programs in areas deemed high risk for the spread of disease. As the bill made its way to the governor’s desk, the issue was playing out in real time in Fresno, which has one of the highest rates of injecting drug use in the country. In September, the Fresno County Board of Supervisors voted to back away from a plan to legalise a longtime needle exchange even though county health officials warned that new infections of HIV and hep C were climbing. “We’re legal again! This allows us to do what’s right health-wise for our patients and our community, and we’ll never again have to ask permission from the Board of Supervisors,” said Dr Marc Lasher, who runs a free medical clinic in conjunction with the Fresno needle exchange. In his signing message, Governor Brown said he was directing health officials to implement the law in a “constrained way, working closely not only with local health officers and police chiefs but with neighbourhood associations as well.” • Abridged from latimes.com (11 Oct 2011) http://tinyurl.com/3s7sacv Also see USA to bring back Federal funding ban on NSP, ED76, page 14.
7977 all-oral drug disappoints USA – Gilead Sciences revealed a setback in its efforts to develop an all-oral treatment of hep C. Eight patients completed a 12-week regimen of the experimental GS-7977 compound with ribavirin which resulted in no detectable levels of the virus in their blood. However, six patients experienced a viral relapse within four weeks. The other two patients had not relapsed two weeks after stopping treatment. “We will continue to explore a number of therapeutic approaches...including combinations with other oral antivirals,” suggested Norbert Bischofberger, Executive Vice President of Research and Development and Chief Scientific Officer at Gilead. • Abridged from lagonian.com (18 Feb 2012) http://tinyurl.com/8yolvt8
news 7977 shows promise in partnership USA – Data from a closely watched mid-stage study combining hep C drugs from Bristol-Myers Squibb and Gilead Sciences was presented at the European Association for the Study of the Liver (EASL) annual meeting. Ninety-seven per cent of genotype 1 hep C patients treated with Bristol’s daclatasvir and Gilead’s GS-7977 have undetectable viral levels after 12 weeks of treatment. For genotype 2/3 patients, the 12-week response rate was 90%, according to Jefferies analyst Thomas Wei. Interim results from a phase II study combining Bristol’s BMS-52 with Gilead’s GS-7977 in genotypes 1, 2, and 3 was the most highly anticipated data presentation at the EASL meeting this year. The study is important because it provides the first glimpses at the hep C killing potency of these two classes of direct-acting antivirals combined into a single, all-oral therapy. • Abridged from thestreet.com (9 Apr 2012) http://tinyurl.com/6u4ryj3
Image via Google Images
St George Hospital liver clinic The multi disciplinary Liver Clinic at St George Hospital supports people with all forms of liver disease including treatment of hep C, hep B and liver cancer. We provide access to clinical trial treatments for hep C including combination therapy with the new drugs, as well as liver cancer trials. For appointments please call 9113 3111, or for more information on clinical trials, contact Lisa Dowdell: 9113 1487 lisa.dowdell@sesiahs. health.nsw.gov.au
Hep Review
Edition 77
June 2012
15
news India twists arms Top-end computer on liver cancer drug tackles hepatitis India – For the first time, India has exercised its legal right to arm-twist pharmaceutical companies to make available expensive, patented medicines at a lower cost, allowing the generic manufacture of a cancer drug owned by a foreign company. The Mumbai controller of patents has granted Natco Pharma, a Hyderabad-based company, a licence for generic manufacture of sorafenib tosylate, a drug used to treat advanced stages of liver cancer, patented by German company Bayer. The Bayer product is sold in India at A$5220 per month, while Natco has declared in its application for a compulsory licence that it would sell its generic version for A$164 per month, according to documents submitted to the controller. “The drug is exorbitantly priced and out of reach of most...people,” PH Kurian, the Controller of Patents observed in his ruling. India’s patent laws, revised in 2005, introduced product patents on medicines, but they contain a provision, Section 84, under which compulsory licences for generic manufacture can be granted “in public interest” either because a patented medicine is not accessible or not affordable. • Abridged from telegraphindia.com (12 Mar 2012) http://tinyurl.com/6v89xem
USA – The Cornell Center for Advanced Computing (CAC) has received a HighPerformance Computing Innovation Excellence Award for the “outstanding application of high-performance computing for business and scientific achievements” for crunching hep C data up to 175 times faster on its experimental MATLAB computing resource. Researchers from the Centers for Disease Control (CDC) used the Cornell resource for computations that provided a better understanding of gene testing that may enable the discovery of new therapeutic targets for hep C. [This type of research discovered the IL28B gene*] MATLAB is a high-level technical computing language widely used in science. The Cornell Center has deployed the language on a 512-core parallel cluster that allows researchers to run applications rapidly by dividing problems into many parts that run simultaneously. Scientists nationwide can run applications on the MATLAB cluster from their own desktops via the TeraGrid high-speed research network. • Abridged from ecnmag.com (9 Jan 2012) http://tinyurl.com/7y4y2lx *The IL28B gene test measures your body’s responsiveness to hep C treatment; it helps estimate your chance of being cured. See ED71, page 17.
Paediatric viral hepatitis clinic Hep C and hep B can be passed on from pregnant mother to baby and occur in unknown numbers in children.
Children with hep B and hep C are usually well and often unaware of their infection. Our Paediatric Viral Hepatitis Clinic will provide early diagnosis, monitoring, and in some cases treatment of children with these infections. Assessment and regular follow up is essential to provide optimal care for these children to reduce the risk of significant liver disease in later life.
Image via Google Images
16
www.hep.org.au
For information, contact Janine Sawyer at The Children’s Hospital Westmead (CHW) on 98453989 or janines1@chw.edu.au
Hep C a threat to Irish health Ireland – The large number of people in Ireland with hep C poses serious implications for the national health services in the future, the Health Protection Surveillance Centre (HPSC) has warned. A recent study has estimated that between 20,000 and 50,000 people in Ireland have chronic hep C. HPSC Director Dr Darina O’Flanagan said this would have serious implications for health services in the future as a significant proportion of those with hep C would go on to develop cirrhosis, liver failure and hepatocellular carcinoma. “In this regard, the anticipated publication of the National Hepatitis C Strategy in 2012 is to be welcomed,” the public health specialist commented. She said once again, very large numbers of cases of hep C were reported in 2010, with over 1,200 cases reported for the first time in that year. Some 67% of cases were male, and 72% of cases were aged between 25 and 44 years old. The geographic distribution of cases was skewed, with the HSE-East reporting 76% of all cases notified in 2010. According to available data, 59% of cases involved injecting drug use as a risk factor; 9% of cases involved immigrants born in an endemic country.
news
Hep B vaccine recommended for diabetic adults
USA – New guidelines recommend the hep B vaccine for all unvaccinated adults aged 19-59 with type 1 and type 2 diabetes. The US Advisory Committee on Immunisation Practices says the immunisation should be done as soon as possible after people are diagnosed with diabetes. Between 700,000 and 1.4 million people in the US have hep B, the Centers for Disease Control and Prevention reports. Chronic hep B damages the liver and can lead to serious illness and death. More than 15% of adults with the condition develop cirrhosis and liver cancer. People with diabetes are at an increased risk for hep B infection, which can occur through minute amounts of blood from someone with hep B who has shared a medical or glucose monitoring device. • Abridged from gantdaily.com (26 Dec 2011) http://tinyurl.com/7g2hq7f An excellent Australian resource has been produced by AIVL about hep B. The resource has been written by injecting drug users for injecting drug users. To check it out: http:// tinyurl.com/77m8zcs
• Abridged from imt.ie (13 Jan 2012) http:// tinyurl.com/6myrnzp
Healthy Liver Clinic every Tuesday 10am - 12pm @ KRC ‡ ‡ ‡ ‡ ‡
Information about hepatitis C transmission and prevention Hepatitis C testing and monitoring Fibroscan referral Specialist treatment Doctor, nurse and counsellor available
Kirketon Road Centre (KRC): Above the Darlinghurst Fire Station, entrance on Victoria Street, Darlinghurst 2010 Phone: (02) 9360-2766
There’s a lot you need to know about hepatitis C - like the fact it can be treated!
Hep Review
Edition 77
June 2012
17
news Cirrhosis patients The Wire and hep C strain health system in the blood USA – Older patients with cirrhosis have significant disability, require twice the amount of informal care-giving and contribute added strain to the health care system, according to researchers from the University of Michigan. The researchers noted that non-alcoholic fatty liver disease has become the most prevalent cause of chronic liver disease worldwide, affecting up to 30% of the general population and found in 75% of obese individuals. It is believed to be costing the US A$1.6 billion annually in healthcare costs and lost work days. “With the obesity epidemic contributing to a rise in fatty liver disease cases along with the aging hep C population, cirrhosis among the elderly is expected to become increasingly prevalent,” says Dr Mina Rakoski, of the University of Michigan Medical School and lead author of the study. In reviewing 317 patients with cirrhosis and 951 age-matched individuals without the disease from the Health and Retirement Study and Medicare claims files, the researchers found that patients with cirrhosis were more likely to be Hispanic, have less education, and have lower net worth. They also found that older patients with the disease had worse self-reported health status and more medical co-morbidities compared to those without the disease. The authors said that utilisation of health care services, including physician visits, nursing home stays, hospitalisations, and disability was more than double in those with cirrhosis compared to non-cirrhotic peers. “A greater focus on comprehensive delivery of patient care by involving caregivers and improving care coordination will help to optimise disease management for older cirrhotic patients,” says Rakoski. • Abridged from medicaldaily.com (11 Jan 2012) http://tinyurl.com/742q5b3 At the end of 2010, there were estimated to be almost 50,000 Australians living with moderate-to-severe hep C related liver disease.
18
www.hep.org.au
USA – Police officers consider themselves part of a brotherhood. But for the purposes of organ donation, a brother in blue may not be quite family enough, as Officer Gene Cassidy is finding out. Cassidy was shot 27 years ago in West Baltimore, and though he survived, he contracted hep C during a blood transfusion and now has endstage cirrhosis. Cassidy’s deteriorating condition was profiled by The Wire creator David Simon in The Baltimore Sun, with the call that someone could help by donating half of their liver. But the University of Maryland Medical Center said it is not seeking altruistic donors. Instead, they prefer family members or close friends who have a personal relationship as the most appropriate donors. That frustrated Cassidy’s wife, Patti, and Police union president Robert Cherry. “They don’t understand that police are family,” Patti Cassidy said. Doctors say the reason for seeking those with close relationships to the patient is that the surgery is invasive, complex and potentially deadly. Dr Benjamin Philosophe, who directs the University of Maryland’s transplant program and who is supervising Cassidy’s care, said doctors aren’t turning people away but want to carefully screen potential donors before embarking on weeks of tests. Among the tests that are run are psychiatric evaluations. “People are touched by this story, but I don’t think they fully comprehend what they’re getting themselves into,” said Philosophe. “We want people to really want to do this. People truly close to him are more likely to go through with the risk. If that’s the case, we’ll consider them.” Gene Cassidy, meanwhile, remains hopeful. “I pray to God that we’ll find somebody,” he said. • Abridged from baltimoresun.com (19 Mar 2012) http://tinyurl.com/6u6no8p The Wire is a ground-breaking TV series that in part, deals with drugs and harm minimisation in the United States: http:// tinyurl.com/yghtooo
feature
Q&A: With all the talk of obesity and diabetes and hep C, what’s the secret to staying healthy?
I
n a nutshell, the secret to better health seems to be – exercise.
Whether you’re nine or 90, abundant evidence shows exercise can enhance your health and well-being. Lots of people don’t move enough to meet the minimum threshold for good health – burning at least 3,000 to 4,000 kilojoules a week through physical activity. Adding as little as half an hour of moderately intense physical activity to your day can help you avoid a host of serious ailments, including heart disease, diabetes, depression, and several types of cancer, particularly breast and colon cancers.
Regular exercise can also help you sleep better, reduce stress, control your weight, brighten your mood, sharpen your mental functioning and improve your sex life. The benefits of exercise may sound too good to be true, but decades of solid science confirm that exercise improves health and can extend your life. • Abridged from harvard.edu http://tinyurl. com/6vlxbun NB: to burn off 4,000 kilojoules you’d need to do four hours walking. To put on 4,000 kilojoules, drink four cans of soft drink. For more info, call the Hepatitis Helpline on 1300 437 222 (local call costs from landlines)
One from the vaults – editor ’s favou
rite ‘toon from Oct 1999.
Royal Prince Alfred Hospital liver clinic
Image, source unknown.
RPA offers specialist services for people with liver diseases including viral hepatitis. Daily medical and nursing clinics provide liver health checks, fibroscan, IL28B gene tests, treatment assessment and management including access to newer therapies via clinical trials. The clinic also provides specialist care and treatments for people with advanced liver disease and liver cancer, and is home to the NSW Liver Transplantation Unit.
Do you want to know more? Please contact the following specialist nurses: Hep C – Sinead Sheils 9515 7661 or Sue Mason 9515 7049 Hep B – Margaret Fitzgerald 9515 6228 Liver Transplantation – Margaret Gleeson 9515 7263 or Fiona Burrell 9515 6408 Liver Cancer – Barbara Moore 9515 3910
Hep Review
Edition 77
June 2012
19
Book early for your place in the next Central Coast...
feature
Hep C: Take Control Program In a supportive environment, participants will work together over six weeks to share and develop skills to better manage their hep C. Some topics to be covered are: •
Better management of hep C and liver-related health problems
•
Treatment and dealing with sideeffects
•
Working effectively with doctors and other health professionals
•
Making healthy lifestyle changes
Starts July 2012 at Wyong
The course will be facilitated by Jennie Hales and Amanda Burfitt who eet other are from the Central Coast Local Want to m h hep C? Health District. people wit
rn what Want to lea to stay you can do d get healthy an f life? more out o
There will be an emphasis on respecting the privacy and confidentiality of all participants.
If you are interested or would like more info about Take Control, please phone Jennie on 4320 2390 or email Amanda on aburfitt@nsccahs.health.nsw.gov.au
feature
Hep C epidemic calls out for cure
Kerri-Anne Smith recently spoke of her telaprevir experience in the Newcastle Herald.
H
ealthcare worker Kerri-Anne Smith started feeling constantly exhausted and put it down to being a single mother raising four children. It was only during a course on blood-borne viruses that Ms Smith, from Toongabbie, western Sydney, suspected she might have contracted an infection from a blood transfusion many years earlier. She saw her doctor and her suspicions were proved correct: she had contracted hep C, a slow-acting virus that can cause severe liver damage. Two new treatments, approved by the Therapeutic Goods Administration this year and described as a medical breakthrough will give hope to patients such as Ms Smith, who was devastated by her diagnosis in 1994, 10 years after her blood transfusion. “I was really shocked. I went to pieces, actually, and I felt I couldn’t tell anyone,’’ she said. Ms Smith was one of the first people in Australia to undergo treatment with telaprevir as part of a trial at Westmead Hospital and says that while the side-effects, which included depression and skin rashes, were unpleasant, she cleared her hep C and it was worth it. “The side-effects were a small price to pay if it meant not dying from end-stage liver disease.’’ The chief executive of Hepatitis NSW, Stuart Loveday, believes the treatments are cost effective. “It’s far more economical to fund treatment for those people who need it and will benefit from it rather than allow them to progress to severe liver disease,’’ Mr Loveday said. “That will be an even greater burden down the track on Australia’s healthcare system. The cost of a liver transplant is about A$130,000. That’s just for the operation. Then there is an annual maintenance cost of about A$15,000 per year.’’ • Abridged from theherald.com.au (15 April 2012) http://tinyurl.com/7c733fb
• • •
Where: Wyong Central, 38A 38A Pacfic Highway, Wyong When: starting Monday, 30 July 2012 Time: 10.30am – 12.30pm
20
www.hep.org.au
Image by Leonard John Matthews via www.flickr.com Unless otherwise stated, people in our images are not connected to hep C.
Hear Kerri-Anne tell her story on the C Me Hear Me DVD: http://tinyurl.com/866ltvl
DO YOU HAVE DIRECT EXPERIENCE OFfeature LIVING WITH HEP C AND WANT TO HELP SUPPORT OTHERS WITH HEP C & END DISCRIMINATION? HEPATITIS NSW NEEDS WORKERS FOR 2 OF OUR PROGRAMS THAT REALLY MAKE A DIFFERENCE
C-EEN &speaker HEARD service The C-een & Heard speaker service at Hepatitis NSW is expanding and we are seeking people who would like to be trained in telling their personal story to groups such as health care workers, prison officers, youth workers, schools and rehabs. Hearing personal stories is a great way to put a human face on a disease that is often misunderstood, and your story could help change the way people think about people affected by hep C. For more information about the C-een & Heard Speaker Service please contact Kirsty on ph: (02) 9332 1853 or email kfanton@hep.org.au
hep connect
a telephone based peer support program Hep Connect provides a phone based peer support service for people living with hep C, their partners and carers, and particularly for people who are considering or currently undergoing hep C combination treatment. Hep Connect workers support and encourage other people with hep C, and can assist in decision making around treatment, or offer practical ways to cope while on treatment. Workers also talk about their personal experiences and about their own treatment journeys offering insight, understanding and emotional support. For more information about Hep Connect please contact Kirsty on ph: (02) 9332 1853 or email kfanton@hep.org.au
TRAINING FOR BOTH PROGRAMS STARTS MID 2012 call now to find out more
Hep Review
Edition 77
June 2012
21
my story
Charlie’s story: Betty Blue inspired bluebird tattoos O
ne summer in the 80s, I accepted a shortterm contract to run a program for six girls that the Education department had defined as “at risk”. This was youth-worker code for girls who, as a result of chaotic family situations, were likely to be pregnant, drug-dependent or in detention before they turned 16. Working with two colleagues, Liz and Amanda, our brief was to take the girls on holiday to the coast, and build their self-esteem by encouraging them to do the sorts of things that so-called “normal” teenagers might enjoy. On the first night the girls sat cross-legged in a circle smoking and chewing gum as we outlined our suggested activities on butcher’s paper. When we asked for a response, there were muffled giggles. The most vocal of the group was Maxine, 13-going-on-40. She grabbed a texta and started writing a shopping list, then insisted on some petty cash in a no nonsense tone that couldn’t be denied. She advised us that they intended to stay in, cook spaghetti bolognaise and watch TV adding, “It’s fine if youse want to go out”. Amanda, Liz and I wandered aimlessly along the pier, passing amusement arcades, fortunetellers and tattoo parlours. We found our way to a pub and drank more than a few rounds of beer. Someone brought up the topic of Beatrice Dalle in the movie, Betty Blue. We were all struck by her image; particularly the tattoo she had on her shoulder. In the 80s, tattooed women were rare outside of jails, but Beatrice, wildly passionate in her off the shoulder dresses and butterfly body art, signalled a strong, sexy, if somewhat off-kilter woman. There was a poignant silence where we sipped the last of the beers and thought about Beatrice. Then Liz put down her pint glass and said, “Let’s go!” We left the pub, went back to a place painted with gaudy dolphins and mermaids and fell in the door. The man behind the desk said he didn’t have a butterfly design but he could do a small bluebird. We agreed. He had burly arms covered in blue ink and his hands trembled. The needle buzzed and stung. We all told each other it didn’t hurt.
22
www.hep.org.au
The next day bustling around the kitchen in a terry-towelling dressing gown, Maxine chastising us for our obvious hangovers, demanded to know what the hell the gauze dressing poking out of my t-shirt was. When I peeled it back carefully revealing the bloody bird, she screwed her face up in disgust, and said we were by far the daftest youth workers she had known.
“When I was discovering Betty Blue and showing off my bluebird tattoo, scientists were only just discovering the non-A non-B virus” Certainly neither Amanda, Liz, the tattooist, nor any doctors I saw over the following years suspected that inside the bluebird adorning my shoulder, a virus was making its way through my bloodstream, mounting an attack on my liver that would last for decades. It wasn’t until 1994 that a routine check-up with an unusually diligent GP revealed that my tattoo had given me hep C, which joined me to a network of at least 230,000 Australians, and 3% of the population worldwide Like a lot of my fellow Hepcats, I had been totally unaware of my hep C infection. The symptoms were vague – brain fog, liver pain, fatigue – and fleeting. For this reason, hep C is often called “the silent epidemic”. But as lots of us find out eventually, silent doesn’t mean benign. Left untreated it can cause serious liver damage and liver cancer, and is the leading cause of liver transplants in Australia. When I was discovering Betty Blue and showing off my bluebird tattoo, scientists were only just discovering the non-A non-B virus. I’d lost touch with Liz, Amanda, Maxine and the girls by the time it was re-named hep C and governments started to develop prevention strategies including
my story
trinity of side-effects: depression, chronic fatigue, insomnia. A grounded, more sensible friend pointed out that I may not get all of the sideeffects, that they were potential, not a given. I feared the low success rate (50%). I told myself it was too much of a gamble for a one-in-two chance. A specialist told me that my chances were closer to 75%. I decided my work and life would suffer too much if I went ahead. Instead, I gave myself over to dozens of alternative health practitioners, herbalists and healers. There were significant benefits from some of the treatments I took, especially naturopathy and acupuncture. But, as I got older the uncertainty that living with a chronic illness brings finally pushed through the stories I had been telling myself and I started to wonder about doing the treatment.
Image via Google Images. Unless otherwise stated, people in our images are not connected to hep C.
mandatory screening of blood donors. Meanwhile, the virus proliferated among the poor, homeless, drug-dependent and incarcerated, and infection rates in developing countries soared. A recent study indicated up to 6% of hep C infections in Canada result from tattoos. It’s possible that Australian rates are similar. Tattoos appear to have taken off in the mid-to-late 1990s with a 1998 study reporting one-in-ten young people over 14 yrs had either tattoos or body piercings. When I moved to the inner-west of Sydney in 2000, it seemed every man and woman on the street was sporting a Celtic arm band. I often pondered approaching people on the street and letting them know just what could be lurking under that Celtic band or in the Sanskrit poem etched down their spine, but didn’t. Perhaps those people like me had already stumbled onto a diagnosis and knew that the only treatment available came with its own horror story.
One day in 2005, I walked past a DVD store on King Street, Newtown, and noticed a new release Betty Blue – the directors cut, marking among other things, almost 20 years since my tattoo. I stood holding the DVD for a long time, and went home and rang the Liver Clinic at Royal Prince Alfred hospital. It would be another few years before I actually got to do treatment, and luckily only had to do 24 weeks. I had a challenging time, like everyone does, and I struggled with some of the documented side-effects. But I did it; I got through. I used various means to do this, including recalling the most resilient people I had known in my life. A motley assortment of individuals formed a line in my head, with of course Maxine and her screwed-up, disapproving face at the start. Twelve months after my last injection came the news that the treatment was successful. The virus had gone. It had been a long arduous process, but I consider myself lucky. Unlike the many thousands of people currently living with hep C, at least I’d known it was there. • Charlie, NSW Also see our back cover.
I feared treatment for hep C, specifically the evil Hep Review
Edition 77
June 2012
23
feature
Serving city streets: A day in the life of St Vincent’s viral hepatitis clinic One of Australia’s largest hepatitis treatment clinics, St Vincent’s opens its doors to Hep Review writer, Charlie Stansfield.
I
t’s a hot Thursday morning on level four in the Xavier Building at St Vincent’s Hospital, Darlinghurst. A little girl is dancing around the cosy waiting room with a copy of Hep Review magazine. She points out the beach cover picture to her mother who smiles apologetically at the rest of us. On another couple of chairs a couple in their 60s are talking about what they might get for lunch. In shorts and t-shirts, they seem like a pair of grey-nomads who have taken a pit stop. A young man with headphones buzzing saunters in and sits. After what seems like a couple of songs, he gets up and has a loud chat to reception about where to pick up his script. He then saunters out again, happy with the news that it can be filled downstairs. The child discovers the water-cooler, and then the tap. She giggles with delight as it runs. If it’s going to be a long wait, my guess is that a water-fight is on the cards. The Viral Hepatitis Clinic is not the easiest place to find in the hospital. From the main foyer on Victoria Street, it’s on the next floor up, kind of tucked away at the end of a corridor, but once you arrive, the friendly vibe helps you to relax. There are no starched nurses uniforms, or white coats here. The reception staff have names written on badges pinned to their casual clothes. So, I know it was Rodney who greeted me warmly, unperturbed by a waiting room about to turn Wet’n’Wild. It’s not a long wait as it happens, but while I am there, I go through a stack of publications on display about advances in hep C treatment. There’s also a series of booklets on non-treatment options, living healthily and other ways of managing hep C. Looking at all the different colourful resources, cartoons, photos and an array of up to date information, I can’t help but flick back in time to fifteen years ago. The only thing I received at my diagnosis (in another clinic) was a grim leaflet about liver biopsy, which I quickly binned after reaching the part about biopsy needles under the rib cage.
24
www.hep.org.au
Clinical Nurse Consultant Zoe Potgieter arrives and I’m reassured to find we are in synch when we get onto the topic of stigma in health care settings. “I don’t need to know how you got hep C, unless you want to tell me. Its kind of irrelevant,” she says. “Obviously, I’m interested if you are still using drugs only because we might need to manage things differently if you were, say, on treatment, but otherwise, it’s really none of my business.”
“The St Vincent’s Viral Hepatitis Clinic is a one-stop shop with just about every service you might need to use all in the one location” Zoe, both enthusiastic and matter-of-fact, takes me on a brisk tour of the multi-disciplinary team of nurses, social workers, a dietician, psychologist and drug and alcohol worker. Along the way we pass people in comfy chairs, reading magazines or dozing, looking as contented as you can look when attached to a drip or having bloods done. The St Vincent’s Viral Hepatitis Clinic is a onestop shop with just about every service you might need to use all in the one location. The old days of hospitals that only seem able to recognise the affected body part, rather than the person owning it, are long gone. There is every effort here to see a human being with their own unique lifestyle who just so happens to also have an illness. “We’re looking at the whole person here, we’re dealing with individuals,” Zoe says as we breeze past some other nurses working on a range of clinical trials.
feature
Clinic nurse, Dianne How-Chow, shows patient, Kevin Street, through to the consulting rooms. Other people shown are photoshoped models. Image by Paul Harvey. Unless otherwise stated, people in our images are not connected to hep C.
“We’re not about pushing treatment. Communication has to be a two-way process and what we recommend is based on what’s best for your health at that point in time.”
into infectious disease and the ongoing clinical trials mean that specialists are possibly a bit more innovative, or more confident about tweaking clinical doses if need be, Zoe explains.
But surely it’s important to get numbers for treatment up given only 2% of people with hep C are doing it? Suddenly, I’ve gone all big picture.
“We have learned much about the body’s response to anti-viral treatments through the 30-odd years work with HIV/AIDS. A lot of what we have discovered can be applied to hep C treatment.”
“Doing treatment is a big step. Each person has to make their own choice at the right time for them,” she says, putting the focus firmly back on the individual. I notice how often Zoe and the other team members use words like “holistic”, “individual” and “choice”. It’s reassuring in a medical environment where all too often the approach is based on “one-size-fits-all”. Lots of people who attend the Viral Hepatitis Clinic are of course undergoing triple treatment therapy (interferon, ribavirin and protease inhibitors) or through one of 15 possible clinical trials. The Clinic offers the usual treatment workup (EEG, bloods, etc), monitoring, review and follow up that other clinics offer. However, St Vincent’s position on the leading edge of research
Over 80% of people registered at St Vincent’s complete treatment once it has started, which is impressive given a lot of the people going through have complex health issues. Zoe believes completion rates have improved as a result of more effective pharmaceuticals and “us getting better at managing the side-effects”. What with the lessons learned from HIV and the ongoing research into treatments, the St Vincent’s team really have made herculean efforts to get one step ahead of the hep C virus. Leading the research and development of better treatment and management of hep C at St Vincent’s is Professor Greg Dore, who in addition to holding a number of prestigious
Hep Review
Edition 77
June 2012
25
feature
Professor Greg Dore shown outside consulting room. Image by Paul Harvey. Standing man is photoshopped, courtesy of Tobyotter, via flickr.com Unless otherwise stated, people in our images are not connected to hep C.
clinical and academic posts, also has the lesser known distinction of being a dead-ringer for actor Richard E Grant. (Withnail and I, Wah Wah, The Iron Lady). It could be a trick of the light, or just that Dr Dore, like Richard E Grant has more than just a touch of the maverick-humanitarian about him. Dr Dore has had a long association with Hepatitis NSW and has led St Vincent’s clinic towards an approach that actively engages with people from all walks of life, including people at risk of serious complications of liver disease. Those folk for whom health may not be number one priority, or those who have trouble accessing health services receive respectful care that works towards preventing them slipping through the net. A decade ago, the St Vincent’s clinic was the first to champion treatment for patients who are active drug users. “The broader community and even some in the medical community hold distorted views about people with hep C,” Dr Dore says. “I enjoy the diversity of the population of people with hep C.”
26
www.hep.org.au
Dr Dore’s resume speaks of a passion for addressing the challenges of hep C across medical, community and government policy lines. He also predicts good news ahead for treating the virus. “We’re going to wipe out the hep C virus soon; there are new treatments being developed that will result in cure for over 90% of people across genotypes, and will also remove the need for interferon in the next few years.” So for those who don’t want to have treatment at this point, an assessment at St Vincent’s still has a number of advantages, such as being able to provide up to date information about upcoming treatments and provide an accurate assessment of liver health. Another key advantage offered by the clinic is the fibroscan. It seems ridiculously easy to have an assessment of liver heath these days. No more umming and ahhing or going into denial about biopsies. No more having to undergo an unpleasant process and then wait weeks for the results. The fibroscan takes all of ten minutes. You lie on your back with your
feature right arm up. The ultrasound probe held against your abdomen gives you a funny little tap as it reads the stiffness of your liver in ten or so places. The doctor can determine a score that ranges from no damage to mild, to moderate to severe. It’s non-invasive and a pretty accurate reading of any damage sustained. The results can at least help each person decide how to prioritise their decision-making about treatment.
“fibroscan takes all of ten minutes. You lie on your back with your right arm up. The ultrasound probe held against your abdomen gives you a funny little tap” In keeping with the holistic body-mind-lifestyle approach, the Clinic also runs Help C semistructured support groups for people thinking about treatment and people on treatment. Social Worker James Clarke who facilitates the groups combines organised information sessions provided by guest speakers with support. There is a fairly unique benefit in talking to someone else in a similar situation and Help C provides this. Currently, the group is small – only six people ages early-20s to 60s – but each group will differ depending on the participants. James is easy enough to contact through St Vincent’s if you want to know more. My visit has come to a close and it’s been a busy morning. I make my way out of the clinic through the waiting room. The little girl and her mother are long gone, replaced by a couple of young guys texting like maniacs and a woman sitting quietly in the corner. Whatever our lifestyle, age or history, a hep C diagnosis invariably leads to a host of sometimes conflicting needs and priorities, thoughts and feelings. Whatever the issue that required the little girl and her mother to attend St Vincent’s, I feel sure they will have received care, help and advice empowering them to take the next steps on their journey.
Ten reasons why you might like to make an appointment at St Vincent’s Viral Hepatitis Clinic. • All you need is a Medicare card and a GP referral. • Treatment costs nothing except for a small monthly admin fee. • You don’t have to live in Darlinghurst or the city to attend the clinic. Anyone can go provided you have a GP referral • Once you have got the GP referral you can either call 8382 2575 or email viralhepatitis@stvincents.com.au to make the appointment • If you’re unsure about treatment or you are definitely not having treatment for other reasons, a clinic visit can provide a full comprehensive check-up, predict the degree of possible liver damage you may have and discuss what options are open to you • We provide an individual response to your situation and you may find that a clinic assessment helps overcome your fears • St Vincent’s is a non judgmental space, on the cutting edge of research into hep C. You couldn’t be in better hands • You can access the fibroscan as part of your assessment • Two specialties on your side: infectious diseases (Prof Greg Dore, Dr Gail Matthews) and gastroenterology (Dr Mark Banta) • When it’s all over, you can get a halfdecent coffee in the café downstairs. It is Darlinghurst after all.
• Charlie Stansfield is a freelance health writer who regularly contributes to Hep Review magazine: violettara@yahoo.com Hep Review
Edition 77
June 2012
27
feature
Investigating General Practice and The Australian hep B epidemic confronts our health system, our communities and 165,000 people living with the condition. A report from La Trobe University examines issues for GPs.
G
eneral practice – local doctors – play a vital role in reducing the burden of hep B infection. The Australian Government National Hepatitis B Strategy 2010-2013 recognises the need to reduce the morbidity and mortality caused by, hep B and to minimise the personal and social impact of hep B. Chronic hep B is causing an increasing burden on the community and the health system. The strategy notes that there are several barriers to minimising the impact of chronic hep B, including that only about one-third of people with hep B have been diagnosed, and that only a small percentage of people access specialist clinical services to manage their infection. Interviews with 26 GPs who identified as having a high caseload of patients with hep B – or an interest in hep B – highlighted challenges that need to be acknowledged and addressed to effectively respond to chronic hep B. These challenges fall into the following themes: • knowledge • health system barriers • relationships with specialists • communication. Knowledge
Fundamental to any discussion of the barriers and challenges to an effective response to chronic hep B by general practice is that GPs are aware of their role in responding to chronic hep B, and that they have the skills and capacity to fulfil this role effectively. All of the interviewed GPs recognised significant knowledge gaps in either themselves, their patients or in at-risk communities, and that these gaps were a primary factor affecting their capacity to clinically manage patients with chronic hep B. The majority of GPs interviewed for this study spoke one or more Chinese languages and/or Vietnamese, cared for patients from similar Asian backgrounds where hep B transmission occurred at birth or in early childhood, and where the chronic infection occurs within families.
28
www.hep.org.au
Most GPs reported that their patients with chronic hep B had a poor understanding of hep B natural history and treatment expectations – which were reported as affecting adherence to clinical management. While a good clinical understanding of hep B was seen as affecting adherence, other social issues also had an impact. These included understandings of the western medical model, stigma and priority of hep B individually and within the family or community. Health system challenges
Three main barriers reported by GPs challenging their capacity to provide health services for people with chronic hep B included: health system support of GPs; regulations restricting the provision of best care by GPs; and financial resources. There is a recognised shortage of GPs in Australia, and participants reported working in extremely busy practices in which time was at a premium. Several GPs expressed a need for additional staff to enhance their work, particularly nurses trained in hep B who could support the care of patients with chronic hep B, and their families. Several GPs stated that current financial incentives provided through Medicare rebates did not support their active involvement in managing people with chronic hep B. Participants noted that long consultation sessions for patients with chronic hep B were often required given the needs of the patients and the complex natural history of chronic hep B, and that current Medicare rebates provide a higher financial return for shorter consultations. For a GP with a small busy practice, this meant that it was not economically viable to provide the extensive level of engagement of patients that was often required. The Australian Government policy limiting subsidies of treatment for chronic hep B to prescriptions from specialists is another barrier for GPs. There was a range of perspectives from the GPs about this issue. Several who spoke with us had received approval to prescribe Section 100 drugs for HIV. The restrictions in relation to the prescribing of hep B related drugs were
feature
hep B nonsensical considering these GPs had the capacity to treat HIV/hep B co-infection but not hep B mono-infection. Limits on the ability of GPs and specialists to order hep B DNA viral load test was another challenge identified by participants. GPs and clinical specialists are permitted to order one hep B viral load per year for a patient. This limits their role in monitoring people with chronic hep B, particularly vulnerable patients who are moving from one stage of the disease to another and require closer follow-up. Relationships with specialists
Effective communication between GPs and primarily public hospital based specialists was described by many GPs as challenging. The type and quality of information provided from the specialist service to the GP through referral letters providing details of the patient’s clinical experience often lacked specific explanation, and there were frequently significant delays in receiving the information. Most GPs reported a need to access expert advice in managing patients with chronic hep B, particularly with complex cases. Several reported significant deficiencies in this process with ineffective or no support being provided by public hospital clinics. Communication
The majority of GPs interviewed spoke more than one language, with 16 GPs speaking two or more languages and none of these identifying language as a barrier affecting their practice. Several reported their patients preferring to be referred to specialists who spoke their language. The perceived deficits of telephone interpreting services meant that several GPs reported using patient family members or friends to provide interpreting services. The provision of on-site interpreters can be difficult, particularly with many newly arrived communities where there were not people with the required language skills. This required the training of interpreters in the basics and terminology of hepatitis.
Recommendations
The findings of this study support the development and implementation of a range of interventions including: • Comprehensive and accessible education including screening, diagnosis and clinical management protocols particularly targeting GPs working with the communities most at risk of infection with chronic hep B • An evidenced-based screening protocol, developed in partnership with GPs, specialists and representatives of communities most affected by chronic hep B, with specific guidance addressing concerns of GPs about auditing by Medicare for the over-servicing of patients • A nationally consistent testing protocol that provides guidance to GPs and other health care workers about gaining informed consent, conveying a test result and patient education and support • A model of care for general practice that increases access to clinical management for people with chronic hep B • Community development interventions and educational resources describing chronic hep B and its impact targeting the communities most affected by the virus • A clearer articulation of the role of GPs in future national strategic responses to chronic hep B. Most of the GPs in this study have over ten years clinical experience with hep B, including eight with over 30 years experience. The loss of this expertise with the retirement of these GPs over the next few years will have substantial impact on the capacity of the health system to respond effectively to chronic hep B. • By Jack Wallace. To download the full report, go to http://tinyurl.com/77w7vmg
Hep Review
Edition 77
June 2012
29
feature
An overview of emerging Hepatitis treatment in Australia is going through a period of rapid change following significant research breakthroughs and the development of different types of drugs that can be used to treat the infection. Hepatitis Australia has provided this guide for current and emerging treatments.
R
esearch into new hep C treatments has resulted in major new classes of drugs being tested in clinical trials. The rapid evolution in the treatment of hep C is expected to result in significantly improved cure rates and potentially reduced duration of treatment making it a much more acceptable option for many. It is anticipated that the new drugs will become available in Australia in three sequential waves:
Wave one
Treatment with pegylated interferon and ribavirin will continue unchanged for people with easier to treat strains of the virus such as genotype 2 and 3; however, an extra drug from a class of drugs called Direct Acting Antivirals (DAAs) will be added to treatment for people with genotype 1. It is expected that the first two drugs from this class to be funded under Medicare will be boceprevir or telaprevir. These two drugs work by blocking an enzyme called “protease” which is needed by the hep C virus to multiply; they are therefore known as “protease inhibitors”. The addition of either of these drugs to standard treatment will improve cure rates significantly and, for some people, will also reduce time on treatment. However, further side-effects are experienced.
Wave two
Treatment with pegylated interferon and ribavirin will continue as the mainstay of treatment for all genotypes. Additional new drugs will be added, not only for genotype 1, but also for other common genotypes, such as genotype 2 and 3. The new combinations may see the addition of one or two DAAs, for example protease inhibitors, polymerase inhibitors and NS5A inhibitors. These drugs act in different ways to block the ability of the hep C virus to multiply. It is anticipated that these new drugs will result in improved cure rates for all genotypes and reduce the time on treatment for some people. Treatment is expected to become more tolerable over time as the frequency and number of tablets needed is reduced. Wave three
During wave three, treatments will no longer include pegylated interferon, but it is thought they will still incorporate ribavirin. Various DAAs will be used in combination. Currently there are numerous clinical trials underway to test the effectiveness and safety of various combinations of DAAs for different genotypes. These new treatments show great promise for very high cure rates, shorter time on treatment and much reduced side-effects compared to current treatment regimens.
“it is very difficult to predict with any degree of accuracy when new hep C treatments will be listed on the PBS”
30
www.hep.org.au
feature
hep C treatments
Image by Chuck Johnson, via flickr.com Unless otherwise stated, people in our images are not connected to hep C.
Availability of the new treatments in Australia
While there is great excitement surrounding the potential to move to non-interferon treatments for hep C, it could take five years or more for these to become available in Australia. In the meantime it is expected that other new drugs will become available which will offer considerable advantages over current treatment. The first wave of new drugs, boceprevir and telaprevir, are currently in the process of assessment by the Pharmaceutical Benefit Advisory Committee and approval by the Federal Government. It is hoped that this process will be completed before the end of 2012. If approval is given the drugs will be listed on the Pharmaceutical Benefits System (PBS) which means the Federal Government will subsidise the cost of the medication making it accessible to Australians who meet the eligibility criteria. The first wave of new treatments, adding boceprevir and telaprevir to treatment for people with genotype 1, is anticipated to continue
for several years until the next group of DAAs described in the second wave complete the clinical trial process and gain PBS listing. Optimistically, another two or three years after that, the noninterferon treatment described in wave three will start to become available in Australia. It is important to note that it is very difficult to predict when new hep C treatments will be listed on the PBS. Regardless of how promising any clinical trial is in the initial stages, there are many hurdles to overcome and not all promising new drugs manage to complete the clinical trial process. For those that do, the subsequent rigorous TGA, PBAC and Cabinet assessment and approval process also takes a considerable period of time and is not predictable. Typically the availability of new treatments in Australia lags well behind the USA. • The full unabridged guide can be found on Hepatitis Australia’s website: http://tinyurl. com/6wlqewn
Hep Review
Edition 77
June 2012
31
my story
am a mother of three beautiful children now grown to adulthood and the grandmother of three gorgeous young grandchildren. I have been living with hep C for at least two decades. I received the virus from either a tattoo or a high school rubella immunisation. I have previously undergone combination therapy – ribavirin and pegylated interferon – in 2003.
I
Furthermore, I had to take five ribavirin tablets per day and inject myself with three doses of interferon per week. These days you are only required to have one injection of peginterferon per week.
During the winter of 2008 I began to feel ill each time I had a cup of tea and was constantly falling asleep in the early afternoon/evening. I went to my GP and she ran a series of tests. I was informed that I once again had hep C. I was also diagnosed with a very rare endocrine cancer.
My home is in country NSW and I travel hundreds of kilometres to Sydney to see the team at the AW Morrow Gastroenterology and Liver Centre at Royal Prince Alfred Hospital (RPA). They are absolutely fantastic at RPA – friendly, supportive and informative.
Apparently my immune system was so low that the hep C viral load had resurfaced due to the cancer. I underwent keyhole surgery to have the tumour removed and a bout of radiation therapy. My liver function tests were really high up to 295. They should be under 35 but all the focus had been on the cancer and the doctors were not overly worried about my liver then. I went to see my naturopath who put me on a new eating program. This worked miraculously as I was very disciplined with my eating and it gave my liver a good rest. Subsequently my liver function tests dropped and have been stable around the 50 mark since then. My liver has severe fibrosis and I have been offered a place in a trial program of the new drug telaprevir which is a protease inhibitor and stops the hep C virus from replicating. It is used with the standard-of-care which is ribavirin and peginterferon. It was a hard decision to go on the treatment as I suffered greatly the previous time. However, I believe the current combination therapy has greatly improved since my previous attempt to clear the virus and I had a successful result from the new genetic test for genotyping which revealed I would respond favourably to the treatment. Back in 2003 when on my first treatment, I had a liver biopsy with a reading of three on the metavir scale. The scale is from 1-4 with four being cirrhosis of the liver.
32
www.hep.org.au
It was a huge decision to go on the trial but I feel very confident in the ability of the RPA team to assist me through this process and have faith in my own body to respond to the treatment drugs and clear the hep C virus permanently. This will enable me to live a fuller, happier life and to grow to a ripe old age with my grandchildren. There is nothing worse than the news that you could be dead in a decade without the eradication of hep C in your blood stream. At the very least it will give my lovely liver a well deserved rest. To conclude, I hope I might inspire others toward a life free of the debilitating illness hep C. May the trials bear fruit and be the long awaited cure for the millions of people world wide living with it. • Catherine, NSW
Image by Puddles, via flickr.com
Catherine’s story: a country-city commute
feature
Cuts and comebacks: Greek harm reduction Cuts to Greece’s health budget have led to a sharp rise in HIV/AIDS in the beleaguered nation, says Médecins sans Frontières. Hepatitis NSW imagines Greece would be seeing similar sharp rises in cases of hep C.
T
he incidence of HIV/AIDS among people in central Athens who inject drugs soared by 1,250% in the first 10 months of 2011 compared with the same period the previous year, according to the head of Médecins sans Frontières Greece. Reveka Papadopoulos said that following health service cuts, including heavy job losses and a 40% reduction in funding for hospitals, Greek social services were under very severe strain, if not in a state of breakdown. “What we are seeing are very clear indicators of a system that cannot cope,” she said. The heavy budget cuts coincided last year with a 24% increase in demand for hospital services, she said, “largely because people could simply no longer afford private healthcare. The entire system is deteriorating.” The warning came as the International Monetary Fund approved its A$37 billion share of Greece’s latest A$164 billion bailout which it needs to meet its debts and maintain social services.
Image by Sunset Parkerpix, via flickr.com Unless otherwise stated, people in our images are not connected to hep C.
MSF Greece said the extraordinary increase in HIV/AIDS among people who inject drugs was largely due to the suspension or cancellation of free needle exchange programs. “We are also seeing transmission between mother and child for the first time in Greece,” Papadopoulos said. “This is something we are used to seeing in sub-Saharan Africa, not Europe.” According to Papadopoulos, such sharp increases in communicable diseases are indicative of a system nearing breakdown. MSF has been active in Greece for more than 20 years, but until now has largely confined its activities to emergency interventions after natural disasters such as earthquakes, and providing care to the most vulnerable groups in the community, including immigrants.
sector, providing emergency care in shelters for the homeless and improving the overall response to communicable diseases. Papadopoulos, who spent 17 years abroad with MSF and returned to her native Greece three years ago, sees hope among the rubble. “What keeps me going is an increasingly strong sense of solidarity among the Greek people,” she said. “Donations to MSF, for example, have of course gone down with the crisis, but donors keep giving, they remain active.” She sees a refreshing new phenomenon of selforganisation and social action. “In the past year of this crisis I have seen really encouraging, really exciting things happening – people are seeing the power of organising themselves. We have to support them.” • Abridged from guardian.co.uk (15 Mar 2012) http://tinyurl.com/6lnbsvq
It is now focusing on supporting the public health Hep Review
Edition 77
June 2012
33
Sites
www.hep.org.au
SITES: the arms l
The main problem about blocking these veins is that if you ever need to be given an injection in hospital, or have a drip put up, it will be more difficult
If you are going to inject, and have reduced the other risks as much as possible, it is the least dangerous place to inject.
Inside elbow
No two people have the same network of veins; size and position vary from person to person. Men tend to have slightly bigger veins than women.
l
These posters are written for people who are injecting drugs. There is no completely safe way of injecting drugs. Injecting a drug (rather than smoking, swallowing or sniffing it) carries a much greater risk of overdose, vein damage and infection. The information on this poster is not here to teach you to inject if you are not already doing it, however, if you are injecting, using the information on these posters can help you reduce the risks you are taking.
Safer Injecting Procedures
34
Hep Review
Edition 77
June 2012
35
If you do inject into a vein in your forearm, point the needle with the flow of blood, away from the hand.
If these veins block, the back pressure of blood will start to make the hands swell.
The Hep Review harm reduction poster, June 2012 (#32). Layout and design by Tim Baxter. Text reproduced with permission from The Safer Injecting Handbook - a comprehensive guide to reducing the risks of injecting by Andrew Preston and Jude Byrne. The Safer Injecting Handbook is available from the Australian Drug Foundation: www.adf.org.au
The veins on the forearm tend to be smaller and deeper. Trying to inject into them puts you at risk of hitting small arteries, the bone or a nerve.
Forearm
Lower arm
When these veins are getting blocked it's time to consider another method of taking your drug, such as sniffing, swallowing or smoking.
feature
Taking hep C treatment to the peop the Newcastle Pharmacotherapy Se The push to broaden peoples’ access to hep C treatment is on. Peter Lavelle reports on an initiative to deliver hep C treatment to clients at a drug treatment clinic in Newcastle.
T
here are more than 230,000 people with hep C in Australia and about 9,700 new cases in Australia every year but few of these people undergo treatment. The number of people in Australia with hep C is increasing and many are at risk of serious liver disease, liver failure and liver cancer. Despite these alarming statistics, many people are reluctant to go though the treatment even though it could spare them a chronic illness that possibly leads to loss of life. There are a number of reasons for this. Some people mightn’t want to go on treatment because of the stigma of having hep C. To a degree, treatment involves going public about your illness – even if it is just explaining why you need time off work to go to your appointments. Another issue is the treatment side-effects. These can be physically and psychologically difficult to endure and treatment can last up to 12 months. Even with the significant advancements in recent years – shorter treatment times and better chances of a cure – many people are put off by the perception of a cure that may seem worse than the disease. There are also groups of people who are alienated from the health system and are less willing or unable to access hep C treatment. They include people who are dependent on drugs, the majority of whom will have hep C. They fear discrimination by the health system because of bad past experiences with doctors and nurses. They may also have difficulty travelling to hospitals for appointments to see the doctors in hep C treatment clinics. Many people who experience alienation or marginalisation from mainstream society may prioritise other needs above their hepatitis and a difficult course of treatment. Many may have had hep C for several decades. They may have significant liver disease and be at especially high risk of cirrhosis, liver failure or liver cancer.
36
www.hep.org.au
If it was easier and less stressful for everyone to enter treatment, more people could be cured, potentially saving the community the enormous cost of treating end-stage liver disease. The problem of how to get more people from alienated communities into hepatitis treatment has doctors and health bureaucrats thinking more innovatively. One innovative trend is to provide hep C treatment as an add-on service at drug treatment clinics. These clinics dispense drug substitutes such as methadone or bupenorphine and enable people who inject drugs to manage their narcotic dependence. Called OST clinics (opioid substitution treatment) they are staffed by doctors and nurses, and provide a good opportunity to provide other healthcare services including hep C treatment.
“the problem of how to get more people from alienated communities into hepatitis treatment has doctors and health bureaucrats scratching their heads” In a nutshell, OST clients can have their hep C diagnosed and managed at the same clinic where they receive their methadone or bupenorphine. Clinics do not necessarily have the resources to provide these extra services, but a current hep C research initiative is looking at how services can be most effectively provided. ETHOS stands for Enhanced Treatment for Hepatitis C in Opiate Substitution Settings. The ETHOS study is led by Professor Greg Dore and Dr Jason Grebely of The Kirby Institute and funded by an NHMRC Partnership Grant and includes collaborations with NSW Health, the NSW Users and AIDS Association (NUAA) and Hepatitis NSW.
feature
ple: ervice
Image by daveblume, via flickr.com Unless otherwise stated, people in our images are not connected to hep C.
One clinic taking part in the ETHOS study is the Newcastle Pharmacotherapy Service. This is one of several OST clinics run by the Drug and Alcohol Services at Hunter New England Health. The “Newcastle clinic” has about 500 people receiving OST at any one time out of a population base of around 500,000 in the Newcastle area, explains Dr Adrian Dunlop, of Hunter New England Health Drug and Alcohol Services. “The majority of people who we see at the Newcastle OST clinic are long term injectors who have been injecting for well over five years, often well over 10 years, and the overwhelming majority of people are hep C positive,” he says. But of the current 500 patients, only a handful are in treatment for hep C. Historically, the fact that so few people who inject drugs are in hep C treatment is not through lack of trying. “Clients at the clinic are regularly counselled and advised that they may have hep C and may need treatment,” he says.
People who appeared likely to accept and undergo treatment were referred to either their GP or the local hep C treatment centre: the gastro/liver clinic at John Hunter, the large regional hospital in the Newcastle/Hunter area. The problem has always been that clients aren’t always able to act on this advice, says Ms Sue Hazelwood, a registered nurse who is also on staff at the Newcastle OST clinic. “The health system that most of us take for granted isn’t often able to meet their needs and our clients know this. Also, they often have too many other problems going on in their lives and they simply prioritise these over their hep C,” she says. It can be as simple as there being no transport options to get to hospital and others were put off by the environment of a big public hospital. “They’d acknowledge that they needed treatment, and would say ‘okay, I’ll go’, but many weren’t able to follow through,” she says.
Hep Review
Edition 77
June 2012
37
feature “We realised that if the OST clinic was to provide them with hep C treatment services, it would solve a lot of these problems,” she says. It was not such a big leap for the clinic, since, as is the case with most OST clinics, staff at Newcastle were already providing clients with information and counselling about hep C treatment. “Our staff already had a great deal of experience in counselling, screening, and harm reduction for hep C, so we were already half way there,” she says. “We heard of the ETHOS study and believed our clinic would be a good fit for it. The clinic applied for and received funding to join and is now into the second year of the three-year ETHOS study.” As well as offering counselling, the Newcastle clinic now offers liver tests, and hep C genotype testing. The unit has a pathology service on site and a peer support worker from NUAA, Hope Everingham, who accompanies clients while they are undergoing pathology tests and helps explain and demystify the testing and treatment process. Those clients who test positive and who agree to treatment are managed – by Dr Julian Keats, a senior addiction medicine trainee, and registered nurse, Sue Hazelwood – over the 24 or 48 weeks it takes for hep C treatment. The Newcastle clinic has a close working relationship with the liver clinic at the John Hunter hospital, where clients are referred for investigations such as fibroscans and for any medical complications. Sue Hazelwood believes the “one-stop-shop” approach has advantages in that the hep C treating doctors are in a better position to know about a client’s drug usage than they might be in a stand alone hep C clinic; and might be more sympathetic and be able to provide better care to those clients with their particular set of needs. “Our experience is that clients have been able to prioritise their appointments and follow up – and complete their treatment,” she says.
Dr Dunlop says the results so far are promising. “Since we began in 2009, 12 people have completed treatment, 10 of whom have achieved a sustained viral response – a cure.”
38
www.hep.org.au
“12 people have completed treatment, 10 of whom have achieved a sustained viral response – a cure” “If it hadn’t been for this additional service, I don’t believe the 12 patients would have been treated for their hepatitis,” he says. A key factor in the clinic’s success so far has been the solid support from Tracey Jones (Hepatology Nurse Practitioner) and the John Hunter Viral Hepatitis Service, and the Hunter New England Drug and Alcohol management. “They’ve been right behind us from the start,” he says. The program has another year of ETHOS funding, and the Newcastle Clinic plans to continue providing hep C treatment services if funding can be obtained beyond this, he says. • Peter Lavelle is a freelance health writer who regularly contributes to Hep Review magazine: p.lavelle@optusnet.com.au Many thanks to the staff at the Newcastle Clinic, John Hunter Hospital and Hunter New England Health Drug and Alcohol Services. Suggested reading:
Rance, J., Newland, J., Hopwood, M., & Treloar, C. (in press). The politics of place(ment): problematising the provision of hepatitis C treatment within opiate substitution clinics. Social Science & Medicine. Treloar, C., Newland, J., Rance, J., & Hopwood, M. (2010). Uptake and delivery of hepatitis C treatment in opiate substitution treatment: Perceptions of clients and health professionals. Journal of Viral Hepatitis, 17, 839-44.
feature Some OST background Before the ETHOS study was established there was a robust debate amongst policy makers and health bureaucrats and some health professionals about the wisdom of introducing hep C treatment services into OST clinic. How compatible would the two services be – OST and hep C treatment?
Image by Michael D. Dunn, via flickr.com Unless otherwise stated, people in our images are not connected to hep C.
Some doctors argued that hep C treatment wasn’t the core business of an OST clinic. Others feared that clients might not want problems with their OST management to get in the way of their hep C treatment.
Another issue was confidentiality – clients mightn’t want it known around the OST clinic that they were hep C positive and receiving treatment. On the other hand, in other studies, clients reported that their often long-standing relationships with health professionals at their OST clinic would help their uptake of hepatitis C treatment, because they felt that they had a good rapport with their OST service provider and trusted them, and these health professionals understood their circumstances. • Peter Lavelle
Hep Review
Edition 77
June 2012
39
feature
Healthcare clinicians and workers need to out on illicit drugs Staff working in the alcohol and other drug (AOD) sector have been called on to show leadership in Australia’s approach to illicit drugs, following the publication of a landmark report by a group of prominent Australians, including former senior politicians and drug experts.
T
he Australia 21 (A21) Foundation convened a recent roundtable meeting to discuss Australian drug policies. The group included current Federal Foreign Minister and former NSW Premier Bob Carr, former Western Australian Premier Geoff Gallop, former NSW Director of Public Prosecutions Professor Nicholas Cowdery and former Australian Federal Police Commissioner Mick Palmer. The group compiled a report The prohibition of illicit drugs is killing and criminalising our children and we are all letting it happen. The report encouraged a rethink of Australia”s approach to prohibition of illicit drugs and called for a national debate about drug use, its regulation and control. Reaction to the report was widespread with both strongly supportive comments and very negative comments appearing in the media. Prime Minister Julia Gillard dismissed any discussion of decriminalisation and called for tougher policing. In response to the community discussion and often off-the-cuff comments made in the media, CEO of the Alcohol and Drugs Council of Australia, David Templeman has called on people who face the day-to-day reality of illicit drug use to share their wisdom in this debate. “The A21 report has generated renewed enthusiasm in the sector, but very quickly led to disappointment and disillusion primarily due to the reaction by political leadership without any discussion or debate,” he told Of Substance. “The AOD sector has a key leadership responsibility to ensure the A21 report remains on the agenda – Australia has led the world in drug reform and policy initiatives.” President of the Australian Drug Law Reform Foundation and former president of the International Harm Reduction Association, Dr Alex Wodak, was a participant in the A21. He agreed.
40
www.hep.org.au
“The AOD workforce fought tooth and nail to get harm reduction implemented to prevent an HIV epidemic among and from people who inject drugs. The AOD workforce should dust down its soapbox, climb on top and start telling the community that treatment works and that we will always need a variety of treatments.” Dr Wodak encouraged clinicians to believe in the power of change, both within the individual and the community. Another roundtable participant, Professor Alison Ritter, the Director of the Drug Policy Modeling Program, urged people who use illicit drugs to enter the debate, despite the stigma that they experience. “The voices of illicit drug users are frequently marginalised, yet they are the most affected by our current drug laws,” she said.
feature Farewell to Kerry Walker
speak
H “I agree entirely with these conclusions ... I’ve seen too many families destroyed by this whole drug thing criminalising our children” Alan Jones, 2BL 4 April 2012
The key goal of the A21 roundtable was to put the issue of drug laws back onto the policy agenda. It is yet to be seen whether this goal was achieved. Professor Ritter believes that educating the community about the key terms used in the drugs debate is essential if an open discussion is to be held. “We need more informed and rational debate that includes consideration of the research evidence, and is careful in its use of terminology. For example, the distinction between decriminalisation and legalisation is essential to progress the public debate.” Dr Wodak suggested that the response to the A21 report showed there had been a shift in the attitude of leading politicans and the community.
epatitis NSW bids farewell to Kerry Walker, Coordinator of Aboriginal Projects, who has recently left us at the conclusion of her contracted postion. Kerry worked with Hepatitis NSW for three years. Over that time she has played a key role within the staff team and more broadly, introducing a more heightened and effective awareness of Aboriginal issues and hep C here in NSW. Kerry’s project work focused on capacitybuilding for a range of services and individuals who work with Aboriginal communities. This included research mapping for access to hep C services across the state. Kerry also developed an induction package for the Hep C Aboriginal Access Coordinators across NSW; valuable posts that are funded by the NSW Ministry of Health. The development and delivery of Aboriginal focussed workshops to Aboriginal and wider hep C workforce was another of Kerry’s deliverables. She worked with key partner agencies including the Aboriginal Health and Medical Research Council, Aboriginal community members, Aboriginal Medical Services and Aboriginal Community-Controlled Health Services. Kerry has taken up a position at the Aboriginal Health and Medical Council’s Aboriginal Health College at Little Bay, Sydney. • Hepatitis NSW
• Abridged from ofsubstance.org.au (12 Apr 2012) http://tinyurl.com/83y92d2
Image by Paul Harvey.
Click here to view the report: http:// tinyurl.com/7mdubh2
Hep Review
Edition 77
June 2012
41
hep chef Article yet to come
Marinated baked salmon
42
www.hep.org.au
Image by Paul Harvey
salad
hep chef
quinoa pomegranate Ingredients
Method
Small bunch of broccolini (steamed)
Marinate the salmon cubes with olive oil and spices and refrigerate for 20 minutes.
1 cup (190g) quinoa 2 tbs pomegranate molasses 2 tbs balsamic vinegar 2 sticks of celery cut into bite sized pieces 1/2 cup (60g) pitted black olives, sliced 2 tbs chopped mint
For the salad, cook quinoa according to packet instructions. Drain and cool completely. Whisk together pomegranate molasses and balsamic vinegar, then season. Toss cooled quinoa in a bowl, add pomegranate seeds by cutting it in half and squeezing. Add olives, shallots and mint and mix with dressing and set aside. Remove salmon from fridge and bake in 210 degree Celsius oven for about 12 minutes.
½ cup of chopped shallots 1 pomegranate (just the seeds) 2 x salmon fillets (with skin on) cut into 2cm chunks
To serve, put salmon chunks (and juices from the baking) on top of quinoa salad and add a side of broccolini and sprinkle with black pepper
1 teaspoon ground cumin 1/2 teaspoon ground coriander powder ½ teaspoon sweet paprika ½ teaspoon tumeric 2 tbs olive oil, plus extra to drizzle
You can cook the whole packet of quinoa and freeze leftovers to add to other meals as a side dish. For example, heat a couple of tablespoons of olive oil and sauté some sliced onion, a chopped clove of garlic and some frozen spinach. Then stir in your leftover quinoa.
Black pepper to serve. These ingredients are available from most suburban supermarkets and fruit shops.
This edition’s Hep Chef is Michelle de Mari of Rose Bay.
Do you want to share your recipies with our readers? Send them in. Recipies should be easy to prepare, healthy and most of all, exciting! Email or phone the editor for more information. pharvey@hep.org.au 02 9332 1853
Nutritional background: Salmon is considered to be very healthy due to the fish’s high protein, high omega-3 fatty acids, and high vitamin D Quinoa - It is a good source of dietary fibre and phosphorus and is high in magnesium and iron. Quinoa is gluten-free and considered easy to digest Pomegranates have tannins with free-radical scavenging properties and are linked to lowering cardiovascular risk factors (Medscape Medical News).
Hep Review
Edition 77
June 2012
43
news
Hepatitis NSW welcomes new staff David Pieper
“I am delighted to be working with Hepatitis NSW as Project Coordinator for the C me Project. Hep C is an issue very close to my heart and I am hoping to use my experience of campaigning and awareness raising to really make a difference for everyone in the affected communities.”
Image by Toby Armstrong.
David Pieper is the Coordinator of the C me project at Hepatitis NSW, a pioneering peer advocacy project. Born and bred in Sydney, he has, over the past 13 years, worked for a number of community health NGOs in the UK including The Hepatitis C Trust.
Kirsty Fanton Kirsty Fanton is a counsellor by trade with previous experience involving careers counselling at a small private university on the North Shore.
Image by Toby Armstrong.
“I also lectured a first year psychology subject there and continue to do so now, alongside my work here at Hepatitis NSW. My work here involves the HepConnect and Ceen & Heard Speakers services. I’m really looking forward to sinking my teeth into this role and am excited about speaking with and meeting many of you in the near future.”
Katia Chehade
“My experience includes working at at the NSW Family Services, Brown Nurses Inner City Ministry, Dympna House and the Aboriginal Health College.” Katia works three days per week (currently Mondays, Tuesdays and Thursdays).
44
www.hep.org.au
Image by Toby Armstrong.
Katia Chehade started working with Hepatitis NSW in April as the Organisational Services Officer. Katia worked for non Government organisations for the past 16 years as an office manager/business manager.
Fill out this double-sided form to tell us how you feel about Hep Review magazine or go to http://www.surveymonkey.com/s/K5ZRSG2 You’ll go in a draw to win a $50 gift card of your choice (see conditions below) After reading this edition, I feel I know more about hep C.
Strongly agree
Agree
Neither
Disagree
Strongly disagree
After reading this edition, I feel I am better able to look after my health.
Strongly agree
Agree
Neither
Disagree
Strongly disagree
After reading this edition, I feel I can make changes in my life.
Strongly agree
Agree
Neither
Disagree
Strongly disagree
After reading this edition, I feel more connected to my doctor and nurses, etc.
Strongly agree
Agree
Neither
Disagree
Strongly disagree
After reading this edition, I feel more able to relate to my patients or clients.
Strongly agree
Agree
Neither
Disagree
Strongly disagree
Overall, I am satisfied with this edition of Hep Review.
Strongly agree
Agree
Neither
Disagree
Strongly disagree
Is there anything you’d like to comment on – good or poor?
Your feedback will help us develop a better magazine. For each edition we will draw one winner from all entries received who have provided a name and contact number. This offer is for NSW residents only. One draw per person.
Hep Review
Edition 77
June 2012
45
To send:
• Carefully rip or cut out this page
• Fold the top part of the page back along the top dotted line
• Then fold this bottom part back along the bottom dotted line
• No one will be able to see what you’ve written
• Secure the top back edge (the shaded bit below) with sticky tape
• Post the form in your nearest mailbox
• Or fax back both sides of this form to 9332 1730.
One $50 prize winner will be drawn for each edition.
Your feedback will help us continue to develop a better magazine – for you! 46 www.hep.org.au
20-29
30-39
40-49 male
60+
transgender
50-59
...............................................................................
m. Other (please describe)
l. Working in AOD (alcohol & other drugs)
k. Working in NSP sector
j. Person who used to inject drugs
i. Person who currently injects drugs
h. Community or youth worker
g. GP or allied health care worker
f. Ex-prisoner
e. Current prisoner
d. Person with hep B
c. Partner, family or friend of someone with hep C
b. Person who has been cured of hep C
a. Person with hep C
7. Please describe yourself (circle as many as you want)
.............................................................................
6. Are you Aboriginal or Torres Strait Islander?
.............................................................................
5. Is a language other than English spoken at home?
.....................................................................................
4. For the purposes of the prize draw, what is your first name and your contact phone number or, if you are currently inside, your MIN? (see conditions, page 45)
3. What is your postcode? (or prison code?) ............................................
2. What is your gender? female
-20
1. What is your age? (Please circle one)
Multicultural HIV/AIDS and Hepatitis C Service Hep Review
Edition 77
June 2012
47
liver-friendly eating
Multicultural HIV/AIDS and Hepatitis C Service 48
www.hep.org.au
feature
Hepatitis C factsheets Staying healthy Introduction Alcohol Avoid diabetes Tobacco Marijuana Nausea Fats Salt Coffee and caffeine Sugars Red meat Dairy foods Food colours and preservatives Vitamin and mineral supplements Further staying-healthy information
Introduction Staying as healthy as possible will help you cope better with hep C. Eating a wide variety of food in the right balance will help you improve your health. The following advice about diet and food has been developed by hep C dietitians. It aims to dispel myths and promote better eating habits.
Alcohol With hep C, your risk of developing liver damage is higher if you are a heavy drinker. Drinking less than the Australian general alcohol recommendations – no more than two standard drinks per day whether you are male or female – will help reduce your chance of long term liver damage. A standard drink is one schooner of light beer, one middy of full strength beer, one standard glass of wine or one nip of spirits. If you want to give yourself the best chance for hep C treatment to work, you should consider abstinence from alcohol before and during your treatment course. Studies suggest that controlling and minimising your alcohol intake will help improve your chance of cure. If you have difficulty reducing your alcohol intake to the National Recommendations, seek advice from your doctor or the Alcohol & Drug Information Service. The following tips may also be helpful: •
Try low alcohol drinks
•
Follow each alcoholic drink with several nonalcoholic drinks
•
Avoid places where there is pressure to drink
•
Avoid drinking in rounds (having turns at buying everyone’s drinks)
•
Finish each drink and then wait a while before starting a new one.
Avoid diabetes
Generally, people with hep C should avoid “liver cleansing” diets as there is little clinical or biological basis to support them.
Type 2 diabetes (lifestyle-diabetes) is diet related and more common in people with hep C. Having type 2 diabetes and hep C and is associated with worse long term hep C outcome and poorer response to hep C treatment.
The bottom line is that if you don’t have serious liver damage (e.g. cirrhosis) there are no particular foods that you should seek or avoid. If you do have serious liver damage, speak to your specialist or doctor for dietary advice.
It is important that you avoid developing type 2 diabetes. This is best done by avoiding overuse of sugars, maintaining a healthy weight and staying as fit as possible. Speak to your doctor or specialist about blood tests to see if you are at risk.
To view the complete four-page factsheet, and our range of 40 This factsheet was produced by Hepatitis NSW and was last reviewed in April 2012 other factsheets, please go to http://tinyurl.com/3f2gx2p Hepatitis Helpline infoline and HepConnect peer support service: 02 9332 1599 / 1800 803 990 Web info: www.hep.org.au Web peer support: www.hepcaustralasia.org Hepatitis NSW Inc is a community-based, non-government organisation, funded by the NSW Ministry 77 of Health Hep Review Edition June
2012
49
1
feature
HELLO HEPATITIS HELPLINE I saw something on TV about a new pill you can take to cure hep C. Is it really that easy now?
The news story you saw was about boceprevir. It is one of the new treatments for hep C (the other one is called telaprevir). Some of the news articles haven’t made the situation all that clear so I’ll summarise some of the key issues (in a nutshell, there’s good news and bad news about these new treatments).
T
he first important thing to realise is that the new drugs will only be useful for people with genotype 1. They are the first of many new drugs that we’ll see in the next few years, which will change treatment pretty dramatically. However, if you have one of the easier to treat genotypes (genotypes 2 or 3), then treatment won’t change for you for a while. Keep an eye out for information about other new drugs, though. Within a couple of years, there could be some developments which could benefit you. If you do have genotype 1, then boceprevir or telaprevir can increase your chances of cure to around 75%, and shorten your treatment time to around six months. (On the current standard treatment, people with genotype 1 need 12 months of treatment, and have around a 50% chance of cure, so the newer treatments are a big step forward.) Bear in mind that those are ballpark figures, though. If you had cirrhosis for example, your treatment would still be 12 months. Chances of cure can also vary: factors like whether or not you’ve had treatment before, how well you’ve responded to previous treatment, and the results of your IL28B test may mean that your chances of cure could go up or down.
Adding the third drug on top is the new strategy, but at the moment, treatment is still interferonbased. Again, that won’t be the situation forever: interferon-free treatments are being trialled, but they’re still a good way off. At this stage, because treatment with the new drugs will remain interferon-based, the treatment side-effects won’t change dramatically. Flu-like symptoms, fatigue, headaches, nausea and all the rest of the regular treatment side-effects are still possibilities on this new regimen. Boceprevir also has its own list of side-effects: risk of low white blood cells, low red blood cells and dysgeusia (a metallic taste in your mouth). Telaprevir will involve the risk of additional skin rash. As always, there’s no guarantee that you’ll experience these things on treatment, but it is good to be prepared and to know what you might expect.
T
he final thing to be aware of with boceprevir and telaprevir is that although they’ve been approved by the TGA (meaning that it’s authorised for use in Australia), at the time of writing, they’re not yet covered by Medicare. The prices also haven’t been set yet, meaning that even if you wanted to pay for the medications yourself, you wouldn’t be able to. However, we are hoping that the new treatments will be funded and covered by Medicare by the end of 2012. So, as usual, there are pros and cons to treatment. There’s no miracle cure just yet, but we’re certainly moving forward. • For more information on new treatment options, please give us a call on 1800 803 990. NB: the brand names for the new drugs are Victrelis (boceprevir) and Incivo (telaprevir).
T
he second important thing that the news stories missed is that treatment with boceprevir or telaprevir still involves many months of pegylated interferon and ribavirin (the standard treatment combination). There is no single-pill that will clear your hep C. “Hello Hepatitis Helpline” is brought to you by the Hepatitis Helpline team. The questions are based on genuine calls but some details may have been changed to ensure caller anonymity.
50
www.hep.org.au
FERRAL. INFO. SUPPORT. RE CONFIDENTIAL
hepatitnise helpli
Ten years ago, Portugal decriminalised all drugs. One decade after this unprecedented experiment, drug dependence is down by half.
D
rug law reform opponents often contend that drug use would skyrocket if countries were to legalise or decriminalise drugs. Fortunately, we have a real-world example of the actual effects of ending the violent, expensive, War on Drugs and replacing it with a system of treatment for problem users and people with drug dependency.
feature my story
The Little Book of Hep C Facts
Health experts in Portugal said that Portugal’s decision 10 years ago to decriminalise drug use and treat drug dependants rather than punishing them is an experiment that has worked. “There is no doubt that the phenomenon of addiction is in decline in Portugal,” said Dr Joao Goulao, President of the Institute of Drugs and Drugs Addiction, at a press conference to mark the 10th anniversary of the law.
Do you know your basics about hep C? Keep an eye on this column. It is taken with thanks from The Little Book of Hep C Facts, produced by Hepatitis South Australia.
The number of drug users considered “problematic” – those who repeatedly use “hard” drugs and intravenous users – had fallen by half since the early 1990s, when the figure was estimated at around 100,000 people, Goulao said.
• Hep C can lead to a deterioration in dental health. It reduces saliva production which in turn, affects the health of gums and teeth
Other factors had also played their part, however, Goulao added. “This development can not only be attributed to decriminalisation but to a confluence of treatment and risk reduction policies.” Many of these innovative treatment procedures would not have emerged if drug users had continued to be arrested and locked up rather than treated by medical experts and psychologists. Currently 40,000 people in Portugal are being treated for drug dependence. This is a far cheaper, far more humane way to tackle the problem. Rather than locking up 100,000 criminals, the Portuguese are working with 40,000 patients and fine-tuning a whole new canon of drug treatment knowledge at the same time.
• Getting hepatitis A or B can lead to a more rapid progression of liver disease in a person with hep C. It is recommended that people with hep C vaccinate themselves against hepatitis A and B • Hep C is a medical condition, not a reason for discrimination. This is the sixth and final instalment of our excerpts from The Little Book of Hep C Facts. Please see our previous editions for all 34 hep C facts – or check out the booklet at http://tinyurl.com/2en75mx
None of this is possible when waging a war. • Editorial, abridged from forbes.com (5 July 2011) http://tinyurl.com/3dwt2r3
Hep Review
Edition 77
June 2012
51
Image by semireal_stock, via www.deviantart.com
opinion Portugal’s drugs climate, 10 years on
promotions
hep C bookmarks O
ur hep C bookmarks have proved very handy in promoting greater awareness about hep C in the general community. Almost 250,000 have been distributed to many public and private schools, public libraries, TAFE and university libraries and commercial book stores.
w w w.h ep .
Can you help raise awareness by distributing the bookmarks? Ideas include: • putting them in doctors’ surgeries • putting a stack of them in your local library, community centre or bookstore • letterbox drops in local streets. We can supply as many bookmarks as you need. Just go to our website and download our resources order form or phone the Hepatitis Helpline (on 1800 803 990). • Hepatitis NSW
join us Hepatitis C is not classified as a tted sexually transmi disease The virus is transmitted when blood from cted infe into one person gets of the bloodstream someone else tion For more informa is about how hep C transmitted, visit rg.au sc.o atiti .hep www or call the Hep C Helpline (see over)
Hep C is a serious illness caused by a tiny virus (germ) that damages the live r Hep C is transmi tted when infected bloo d from one person gets into the bloodstream of someone else This can happen during tattooing or body piercing if the worker doe s not use sterile equipment and sterile techniques. To find out about safer tattooing and piercing, visit
www.hepatitisc.or
g.au
or call the
Hep C Helpline (see over)
52
www.hep.org.au
sms
0404 44 Don’t discr
iminate
Hepatitis C (also affects around called hep C) one in every Australian hou 25 seholds. is C Hepatitis People with hep C come from all bac . kgr catch oun hard to ds. accurately ass You can’t ume anythin about them. g It is not transmitted by who e someon Hep C is ver touching y diffi cult to pass on. Whether has it or drinking out of in homes or the same cup or using theworkplaces, if you avoid bloodsame knives and forks. to-blood con tact with oth er people, you are not at risk. It is transmitted when So if infected blood from one hep you find out someone has C, support the person gets into the m and don discriminate against them. ’t bloodstream of someone else. For more info rmation For more information about about hep C visit www.hep.or hepatitis C visit g.au or org.au cal patitisc. l the www.he Hepatitis He or call the lpline (see over) Hep C Helpline (see over)
TRANSMI
feature
or g. au – yo ur on e- st op sh op fo r he p in fo
40 103
ISSION@HEP.ORG.AU
a time to sp To organise
nteer phone
eak to a volu
ydney) 9332 1599 (S SW regional) N ll a c e re (F 0 1800 803 99
Hep Review
Edition 77
June 2012
53
promotions
membership matters
e
E vic E Ser R lth F Hea
SW N
Membership renewals for 2012
Our 2012 membership year begins on the 1st of July and we look forward to receiving your renewal after that date. Unsure of your membership status? Ring the office on 02 9332 1853 and we’ll soon set you straight. Eligible Zero Fee memberships (not new or renewed since November 2010) are also due for renewal now. For quick and easy secure online payment using Paypal, visit the membership page of our website www.hep.org.au
Do you want to get healthy? See inside to find out how.
Other options: fax your renewal to 02 9332 1730 OR mail to PO Box 432, Darlinghurst NSW 1300. Cheque and money order payments are welcome and you may also pay by EFT. Please refer to the membership form (right) or on the website for EFT instructions and remember to quote your invoice number or membership number when making the payment. Don’t know your membership number? Call us. Organisational and Professional members will receive invoices by the end of June. PLEASE quote your invoice number with EFT payments for correct allocation to your membership. Not a member yet?
Check out our range of membership options on the membership page right (or on our website) and choose the one which fits you. Submit your online or hard-copy application and we’ll take it from there. Be informed, be involved. Be part of the solution by helping us to help NSW people living with or at risk from hepatitis.
www.gethealthynsw.com.au
Hep C treatment is more effective if you’re in better shape: not carrying too much extra weight, and not tending towards type-2 diabetes. With better treatment options on the horizon, perhaps now is a good time to ask yourself, Do I want to get healthy? If the answer is yes, give the gethealthy campaign a call. Ed. 54
www.hep.org.au
You’ll receive quarterly copies of Hep Review and e-news updates on hepatitis issues and our work. You’ll have the opportunity to attend our Annual General Meeting and help elect our Board of Governance or express an interest in volunteering your own services for the Board. We’ll also canvass your opinions on issues of concern and invite you to take part in a range of campaigns and fundraising activities for Hepatitis NSW. Register your interest in these activities by emailing campaigns@hep.org.au
membership form / renewal / tax invoice An invitation to join / rejoin Hepatitis NSW Please complete A or B or C, then complete other side
PO Box 432 DARLINGHURST NSW 1300 Or fax: 02 9332 1730
1.
About us
Name
We are a community-based, non-government, membership organisation and a health promotion charity. Our role is to work in the best interests of and provide services for people affected by viral hepatitis in NSW.
P ostal address
Hepatitis NSW is overseen by a voluntary board of governance, mainly made up of people elected by the membership. Although primarily funded by NSW Health, we rely heavily on the involvement and financial support of our members.
Privacy policy Hepatitis NSW respects and upholds your right to privacy protection. In accordance with National Privacy Principles, we have a detailed policy and set of procedures regulating how we collect, use, disclose and hold your personal information.
A. For
people affected by hepatitis or other interested people
S uburb/ town State
P ostcode
Home phone
E mail
B.
For individual healthcare or related professionals
Name Occupation Postal address Suburb/town State
Postcode
Work phone
Work fax
Mobile
For a copy of the policy, please contact us on 02 9332 1853 (Sydney and interstate callers), or 1800 803 990 (NSW regional callers), or visit our website: www.hep.org.au
Membership
May we list you on our referral database?
Our membership year begins on 1 March and runs to the end of February the following year. All members (including Zero Fee members) are required to renew their memberships annually to retain member benefits.
Free copies of The Hep Review required
For NSW health care workers One of our services is the NSW Hepatitis Helpline, an information and support phone line whose staff are able to refer callers to a range of services and health care workers in their local area (within NSW only). If you want to be listed on our database as a referral option, please indicate on this form and return to us by fax or post. We will provide posted regular hepatitis information. Hep Review, the most widely-read hepatitis magazine in NSW, targets both people affected by hepatitis C and health care workers, is provided free to all members of Hepatitis NSW. If your service has clients or patients who may be interested in Hep Review magazine please indicate the number of extra copies you would like to receive.
C.
1
2 5 10 20 50 80 160
For agencies, organisations and companies
Name of agency Contact person Position Postal address Suburb/town State
Postcode
Work phone
Work fax
Mobile
May we list you on our referral database? Free copies of The Hep Review required
Hep Review
Edition 77
1
2 5 10 20 50 80 160 June 2012 55
2. Are you a new or existing member ?
5. Separate donations are gratefully accepted Donations of $2 and over are tax deductible
This is the first time I’ve applied to become a financial member
If you would like to make a separate donation, please record the amount here, thanks
I’m already a financial member and this is a membership renewal
$ ……….
6. If paying by credit card, please provide all information in this section and include your daytime phone contact on page 1
I currently receive your magazine and I want to become a financial member
Card number
I’m not sure – please check your database Card type: 3. Our membership year begins on 1 March and finishes on the last day of February. To become a financial member, please tick one membership fee box, below: Waged: for people in paid employment
$25
Concession: for people on government benefits
$10
Zero Fee membership: for people in NSW experiencing severe financial hardship (eg NSW prison inmates)
$0
Individual health or allied professionals
$40
Community-based agency (management committee run)
$50
Public/private sector agency
$70
MasterCard
Expiry date
Month:
Visa Year:
Cardholder signature:
Please print cardholder name:
7. Payment, GST and postage
NB: Above are Australian rates only. Overseas applicants please contact our office or consult our website for additional surcharge information.
4. Contact with our office We post our magazine out every three months in plain unmarked envelopes. Occasionally, we contact members (especially those living in Sydney) by phone or mail, seeking volunteer assistance here in the office.
All Hepatitis NSW membership fees are GST exempt. For health professionals, our membership fees may be tax deductible. If paying by cheque or money order, please make payable to: Hepatitis NSW Inc Membership Please post your payment with this completed form to Hepatitis NSW PO Box 432 DARLINGHURST NSW 1300 Our ABN is 96 964 460 285 8. Would you like us to post you a receipt ? If you would like a receipt for your payment, please tick here 9. Declaration – I accept the objects and rules of Hepatitis NSW and apply for association membership / renewal. I agree to my personal contact details being held by Hepatitis NSW and used in accordance with the association’s privacy policy. Signed:
Dated:
I’d like to assist. Please contact me regarding volunteer work Please do not contact me regarding volunteer work this section for office use only
56 initials www.hep.org.au staff
date received
If you would like to obtain a copy of our constitution or privacy policy, please contact the office (02 9332 1853) or visit our website: www.hep.org.au amount received
receipt number
date entered
membership number
info pack sent?
obituary
Penny Scott 1975-2012
P
enny is remembered as a valued staff member at Hepatitis NSW and a dedicated advocate of harm reduction, as well as being a generous and loving friend and colleague, and a courageous and wonderful woman and mother. Penny died, aged 36, on Easter Monday, after a short and very intense struggle with cancer. Penny started at Hepatitis NSW in 2008, in the Education and Development team, and quickly became one of my most cherished friends and confidantes. It did not take long for us to realise what a special person she was. Penny had led an extraordinary life, though it was something she would never wear on her sleeve. She had lived in Sydney, Queensland (in a teepee) and northern NSW, and was a tireless adventurer, a wise educator and a soulful nurturer. Penny was someone who you felt you could say anything to and be heard with a level of empathy and compassion I had never experienced before.
She also possessed a breadth and depth of knowledge about an astounding range of subjects, including advanced science (she had a degree in biology, but was also well versed in chemistry and physics), psychology, ethnobotany, Eastern and Western philosophy, contemporary politics, anthropology and mysticism. She had commenced a PhD relating to the philosophy of science. Her feet were truly well planted in the ground and her mind was in the heavens. Penny was also an accomplished visual artist (who exhibited with some of our co-workers in the “Art and Us” exhibition in 2009) and extraordinary singer and song writer, a talent many of us didn’t know about at all. The more you got to know Penny, these little things unveiled, unconsciously, gently and humbly. Penny is remembered by colleagues as being warm, welcoming and generous, with a brilliant intellect. A powerful, beautiful, strong, exceptionally intelligent and gentle woman, Penny is mother to Maya, her 12 year old daughter, who will continue to grow up, blessed by Penny’s strength, support, wisdom and love. • Leon Fernandes – with contributions from staff at Hepatitis NSW, Louise Maher and Harpreet Kalsi.
Hep Review
Edition 77
June 2012
57
Photographer unknown.
“Just when you think you are blessed with the best friends you could ever find, and your life is rich and complete...along comes this beautiful breath of fresh air with a killer smile, and somehow it feels like she has been part of your life forever.”
research updates Research updates introduction In previous readership surveys many people said they wanted detailed information on hep C. These research update pages attempt to meet this need.
Individual articles may sometimes contradict current knowledge, but such studies are part of scientific debate. This helps develop consensus opinion on particular research topics and broadens our overall knowledge. The articles on these pages have been simplified but to a lot of readers may still appear overly medical or scientific. If you want any of these articles explained further, please don’t hesitate to phone the Hepatitis Helpline on 9332 1599 (Sydney callers) 1800 803 990 (other NSW callers). In some of the research updates, for ease of reading, we have rounded percentages down or up to whole numbers.
What is killing people with hep C?
Hep C treatment cost-effective for people who inject
Australia – The burden of hep C morbidity and mortality continues to rise. Progression to advanced liver disease among individuals generally requires decades, but we are entering an era where those who contracted HCV in the 1970s and 1980s are at significant risk of mortality.
UK – Antivirals are cost-effective for people who inject drugs, according to a study published in Hepatology.
Liver disease has overtaken drug-related harm as the major cause of mortality in people with chronic hep C in many settings. Direct-acting antiviral therapies have provided renewed optimism, but HCV treatment uptake will need to increase markedly to reduce liver disease mortality. This review provides updated information on the natural history of chronic hep C, diseasespecific causes of mortality among people with HCV, estimates and projections of HCV-related disease burden and mortality and individual and population-level strategies to reduce mortality. The considerable variability in mortality rates within sub-populations of people with HCV will be outlined, such as in people who inject drugs and those with HIV coinfection.
Natasha Martin and colleagues compared the cost-effectiveness of providing antiviral treatment for IDUs, ex or non-IDUs, or no treatment. They developed a model of hep C transmission and disease progression which incorporated assumptions including: a specified number of antiviral treatments to be given at the mild HCV stage over a period of 10 years, no retreatment for those who failed treatment, potential reinfection, and scenarios for baseline IDU HCV chronic prevalence of 20, 40, and 60%. Long-term costs and outcomes measured in quality adjusted life years (QALYs) were performed and the incremental cost-effectiveness ratio (ICER) was compared for no treatment, antiviral treatment for IDUs, and antiviral treatment for ex/non-IDUs.
Semin Liver Dis. 2011;31(4):331-339
“Treating chronic HCV infection among injectors and ex- or non-injectors is cost-effective, but treating injectors may be more cost-effective when the chronic HCV prevalence among IDU is below 60%,” the authors write.
• Abridged from medscape.com (9 Feb 2012) http://tinyurl.com/7sqnc3n
• Abridged from doctorslounge.com (6 Jan 2012) http://tinyurl.com/8y9ya8l
58
www.hep.org.au
research updates Delivering hep C treatment within a methadone program: implications for program replication USA – Hep C virus (HCV) is a prevalent chronic blood-borne infection among opioid-dependent patients on methadone maintenance treatment (MMT). Despite case reports and case-control studies, a randomised controlled trial (RCT) examining HCV treatment adherence in methadone-maintained patients is lacking and was the impetus for this ongoing RCT examining modified directly administered therapy for HCV treatment integrated within a MMT. People were randomised 1:1 to receive HCV treatment as modified directly observed therapy (mDOT) into the MMT program or at a liver specialty clinic as self-administered therapy (SAT). Randomisation was stratified based on HIV status and HCV genotype. Twenty-one people to date have enrolled in this pilot study. The mDOT subjects have had greater success in starting treatment and 10 of the 12 mDOT subjects achieved early virologic response (EVR) at week 12 and 6 of those 10 achieved sustained virologic response (SVR). Of the nine SAT subjects, only three achieved EVR at week 12 and only one achieved SVR despite not completing the treatment.
Alcohol treatment boosts hep C cure rates France – People who drink – even heavily – can successfully undergo hep C treatment if they’re provided with individualised, multidisciplinary care that also addresses their alcohol use, according to a study published in Journal of Hepatology. Dr Caroline Le Lan and colleagues treated 73 alcohol-dependent patients for both hep C and addiction. Their treatment outcomes were compared to a matched group of non-drinkers. Although overall cure rates were similar (48% versus 49% for non-drinkers), people who drank excessively during treatment – defined as 21 or more drinks per week for men, 14 or more drinks per week for women, or at least four drinks at a time – were less likely to be cured than those who drank less or were abstinent. There is very little information on hep C treatment outcomes among moderate or excessive drinkers. “Doctors are reluctant to treat alcoholic patients because they fear that these patients may experience more side-effects and have poor adherence and that heavy alcohol consumption may worsen antiviral treatment outcomes,” said Lan, noting that it may not be possible for every alcohol-dependent patient to reduce, or stop, alcohol consumption, either before or during treatment.
Hepatitis C treatment can be successfully integrated into a methadone maintenance clinic, and mDOT can be implemented with a methadone clinic’s existing nursing and medical staff. Patients struggling with concurrent substance use and mental illness comorbidity may be successfully addressed in such settings and facilitate access to and completion of treatment through the utilisation of on-site clinical services for HCV treatment and adherence support with mDOT. The exact importance of site of services and adherence support remains a significant area for future investigation.
“The paradox is that alcoholic patients, who have the highest potential to progress to severe liver disease, are excluded from treatment without any published evidence,” said the authors. There was an unexpected benefit to combining treatment for hep C and alcohol dependence: a third of patients, half of them heavy drinkers, stopped drinking during hep C treatment and remained abstinent afterward.
Bruce RD, et al. Developing a Modified Directly Observed Therapy Intervention for Hepatitis C Treatment in a Methadone Maintenance Program: Implications for Program Replication
• Abridged from aidsmeds.com (30 Jan 2012) http://tinyurl.com/6o699u6
Lan’s group concluded, “Treating alcoholic patients was feasible and led to viral eradication and durable alcohol cessation in a number of them.”
• Abridged from http://informahealthcare.com/ doi/abs/10.3109/00952990.2011.643975 Hep Review
Edition 77
June 2012
59
research updates BBQ food link to silent epidemic of fatty liver Australia – Compounds formed when food high in protein and fat is cooked at high temperature – such as barbecued meats – could be a key factor in the progression of liver disease, a Melbourne researcher has found. Chris Leung, a liver specialist at the Austin Hospital, found that a diet high in the compounds – known as advanced glycosylation end-products – accelerated liver inflammation and scarring in animal studies. Dr Leung said fatty liver disease affected 30-50% of the population. The incidence rose to up to 70% for patients with diabetes and high cholesterol. Patients are currently told to exercise regularly and eat a balanced, low-fat diet high in fruit and vegetables. But Dr Leung said he wondered if advanced glycosylation end-products – previously found in elevated levels in the blood of patients with liver cancer – could be part of the problem. • Abridged from canberratimes.com.au (10 Feb 2012) http://tinyurl.com/843ywcu
3D model reveals enzyme’s attack Australia – Scientists have determined the structure of the enzyme endomannosidase, which clarifies how viruses like hep C hijack human enzymes. The findings open the door to the development of new drugs. “If we understand how the viruses use our enzymes, we can develop inhibitors that block the pathway they require, opening the door to drug developments,” he says. “Combining international resources and expertise, we were able to determine the endomannosidae structure and this has revealed how we can block...the viruses from hijacking human enzymes,” says Williams.
Staying safe from hep C UK – Staying Safe is an international, qualitative, social research project, the aim of which is to draw on the experiences of people who inject drugs (long-term) to inform a new generation of HCV prevention strategies. The Sydney project team employed life history interviews and computer-generated timelines to elicit detailed data about unexposed participants’ (n =13) injecting practices, circumstances, and social networks over time. The motivations and strategies that enabled participants to avoid risk situations, and which might have helped them to “stay safe,” appeared not to be directly related to harm-reduction messages or HCV avoidance. These included the ability and inclination to maintain social and structural resources, to mainly inject alone, to manage withdrawal, and to avoid injectingrelated scars. These findings point to the multiple priorities that facilitate viral avoidance among people who inject drugs and the potential efficacy of nonspecific HCV harm-reduction interventions for HCV prevention. Magdalena Harris, et al. Staying Safe From Hepatitis C: Engaging With Multiple Priorities. • Abridged from http://qhr.sagepub.com/ content/22/1/31.short
Compound kills liver cancer USA – Scientists have identified a compound that rapidly kills hepatocellular carcinoma (HCC) cells. Devanand Sarkar discovered Late SV40 Factor (LSF) in 2010 when he demonstrated higher LSF levels in HCC patients in comparison to healthy individuals, and showed that inhibition of LSF reduced the progression of HCC. This finding led to the discovery of LSF inhibitor, Factor Qunolinone Inhibitor 1 (FQI1).
Their findings are published in Proceedings of the National Academy of Sciences.
Studies are being conducted to determine how FQI1 behaves in the human body. Findings will be translated into phase I clinical trials in patients with liver cancer.
• Abridged from futurity.org (6 Jan 2012) http:// tinyurl.com/8yo7ct9
• Abridged from vcu.edu (13 March 2012) http://tinyurl.com/85hjlby
60
www.hep.org.au
research updates Discovery provides blueprint for new drugs to KO hep C
Milk thistle comparable to placebo in hep C study
USA – Chemists at the University of California, San Diego have produced the first high resolution structure of a molecule that when attached to the genetic material of the hep C virus prevents it from reproducing.
USA – Silymarin, an extract of milk thistle, had no benefit on levels of alanine aminotransferase (ALT) in people with hep C, according to a study reported at the 2011 AASLD meeting.
The structure of the molecule provides a detailed blueprint for the design of drugs that can inhibit the replication of hep C virus, which proliferates by hijacking the cellular machinery in humans to manufacture duplicate viral particles. The molecule is from a class of compounds called benzimidazoles, known to stop the production of viral proteins in infected human cells. Its three-dimensional atomic structure was determined by X-ray crystallography, a method of mapping the arrangement of atoms within a crystal. The angles and intensities of the light beams allowed the scientists to calculate the structure of the viral RNA-inhibitor complex. “This structure will guide approaches to rationally design better drug candidates and improve the known benzimidazole inhibitors,” said A/Prof Thomas Hermann. • Abridged from worldpharmanews.com (20 Mar 2012) http://tinyurl.com/7jgfras
Drug use increasingly associated with microbial infections India – Illicit drug users are at increased risk of being exposed to microbial pathogens and are more susceptible to serious infections say physicians writing in the Journal of Medical Microbiology. The review highlights evidence that unsterile injection practices and contaminated needles represent avenues by which micro-organisms can enter the body. Dr Kaushik believes that an increased awareness of the microbial complications associated with drug use will allow better diagnosis and management of infections. • Abridged from infection-research.de (10 Mar 2011) http://tinyurl.com/8xvvvf6
The study, reported by Dr Michael Fried of the University of North Carolina, randomised three groups of people who had chronic hep C and elevated ALT levels. For the study, they received one of two doses of Legalon-brand silymarin or placebo for 24 weeks. The study’s primary goal was to get participants’ ALT levels below 65 IU/L, provided this was at least a 50% decline from people’s pre-treatment measurements. Four US clinical centres enrolled a total of 154 people, of whom 90% completed the requisite 24 weeks of follow-up. Unfortunately, average declines in ALT levels after 24 weeks of treatment did not differ significantly between the three groups. Six study volunteers met one of the primary goals of the study. Fried’s group examined whether failure to take the Legalon as prescribed contributed to the lack of efficacy. Yet, more than 90% of the study volunteers met or exceeded an 80% adherence threshold, determined by counting the number of dose cups returned to the clinic sites. And when the analysis was restricted only to those who maintained at least 80% adherence, there were still no statistically significant differences between the three groups. “Oral silymarin administered at higher-thancustomary doses did not significantly alter biochemical markers of disease activity in patients with chronic hepatitis C who had failed prior treatment with interferon-based regimens,” Fried’s team concluded. • Abridged from aidsmeds.com (15 Nov 2011) http://tinyurl.com/6vovv8n Other studies say that silymarin may be more effective in earlier stages of liver disease and perhaps this group who had failed interferon previously may have had more advanced liver disease. This will not be known until the research is published in detail in Gastroenterology (the AASLD journal).
Hep Review
Edition 77
June 2012
61
interferon-based treatment Triple combination treatment
Treatment generally lasts for either 24 or 48 weeks, depending on genotype.
Incivo (telaprevir) and Victrelis (boceprevir) have been approved by the Therapeutic Goods Administration for the treatment of chronic hep C genotype 1 infection.
Subsidised “peg combo” treatment for people with chronic hep C is available to those who satisfy all of the following criteria:
Each of these new drugs is approved for use in a triple combination regimen with peginterferon alpha and ribavirin, in adult patients (18 years and older) with compensated liver disease who are previously untreated or who have failed previous therapy. These new drugs are not currently funded by the Australian government. Please phone the Hepatitis Helpline for information about how you may be able to currently access boceprevir or telaprevir.
Standard combination treatment Standard treatment for hep C consists of a combination of weekly injections of pegylated interferon and ribavirin pills taken orally daily.
Blood tests: People must have documented chronic hep C infection: repeatedly anti-HCV positive and HCV RNA positive. Contraception: Women of child-bearing age undergoing treatment must not be pregnant or breast-feeding, and both the woman and her male partner must use effective forms of contraception (one for each partner). Men undergoing treatment and their female partners must use effective forms of contraception (one for each partner). Female partners of men undergoing treatment must not be pregnant. Age: 18 years or older. Treatment history: People who do not respond to treatment or who relapse after treatment are no longer excluded from accessing treatment again (phone the Hepatitis Helpline for more information).
Duration and genotypes
For people with genotype 2 or 3 without cirrhosis or bridging fibrosis, treatment is limited to 24 weeks. For people with genotype 1, 4, 5 or 6, and those genotype 2 or 3 people with cirrhosis or bridging fibrosis, treatment lasts 48 weeks. Monitoring
People with genotype 1, 4, 5 or 6 who are eligible for 48 weeks of treatment may only continue treatment after the first 12 weeks if the result of a PCR quantitative test shows that HCV has become undetectable, or the viral load has decreased by at least a 2-log drop. PCR quantitative tests at week 12 are unnecessary for people with genotype 2 and 3 because of the higher likelihood of early viral response. People with genotype 1, 4, 5 or 6 who are PCR positive at week 12 but have attained at least a 2-log drop in viral load may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative test at week 24. Similarly, genotype 2 or 3 people with cirrhosis or bridging fibrosis may continue treatment after 24 weeks only if HCV is not detectable by a PCR qualitative
CAUTION Treatment with interferon has been associated with depression and suicide in some people. Those people with a history of suicide ideation or depressive illness should be warned of the risks. Psychiatric status during therapy should be monitored. A potentially serious side-effect of ribavirin is anaemia caused by haemolysis (destruction of red blood cells and resultant release of haemoglobin). People’s blood counts are monitored closely, especially in the first few weeks, and doctors may lower the ribavirin dose if necessary. Adults who can’t tolerate ribavirin and have had no prior interferon treatment may be offered subsidised peg interferon mono-therapy if they meet certain criteria. Ribavirin is a category X drug and must not be taken by pregnant women. Pregnancy in women undergoing treatment or the female partners of men undergoing treatment must be avoided during therapy and for six months after cessation of treatment.
62
www.hep.org.au
complementary medicine test at week 24. PCR qualitative tests at week 24 are unnecessary for people with genotype 1, 4, 5 or 6 who test PCR negative at week 12. Your clinician may want to establish your level of liver damage. Fibroscan is the prefered option although in some cases, liver biopsy may be suggested. Alternative access
People wanting to access treatment outside of the government-subsidised Medicare S100 scheme can purchase treatment drugs at full price or seek access through industrysponsored special access programs. If you have private health insurance, the drugs may be claimable under your health cover. For more information, call the Hepatitis Helpline. NSW treatment centres
Treatment centres are required to have access to the following specialist facilities for the provision of clinical support services for hep C: • a nurse educator or counsellor for patients • 24-hour access to medical advice for patients • an established liver clinic • facilities for safe liver biopsy. Phone the Hepatitis Helpline for the contact details of your nearest centre. In New South Wales, Justice Health has nine treatment assessment centres (two within women’s prisons) and various clinics for monitoring ongoing treatment. • Hepatitis NSW The above info is reviewed by the Department of Health and Ageing prior to publication.
Complementary medicine Good results have been reported by some people using complementary therapies for their hepatitis, while others have found no observable benefits. A previous Australian trial of one particular Chinese herbal preparation has shown some positive benefits and few sideeffects (see Edition 15, page 6). A similar trial, but on a larger scale, was later carried out (see ED24, page 8). A trial of particular herbs and vitamins was carried out by researchers at John Hunter Hospital, Newcastle, and Royal Prince Alfred and Westmead hospitals, Sydney (see ED45, page 9). Some people choose complementary therapies as a first or a last resort. Some may use them in conjunction with pharmaceutical drug treatments. Whatever you choose, you should be fully informed. Ask searching questions of whichever practitioner you go to. • Will they consider all relevant diagnostic testing? • Will they consult with your GP about your hepatitis? • Is the treatment dangerous if you get the prescription wrong? • How has this complementary therapy helped other people with hepatitis? • What are the side-effects? • Are they a member of a recognised natural therapy organisation?
Remember, you have the right to ask any reasonable question of any health practitioner and expect a satisfactory answer. If you are not satisfied, shop around until you feel comfortable with your practitioner. You cannot claim a rebate from Medicare when you attend a natural therapist. Some private health insurance schemes cover some complementary therapies. It may help to ask the therapist about money before you visit them. Many will come to an arrangement about payment, perhaps discounting the fee. It is also important to continue seeing your regular doctor or specialist. Talk to them and your natural therapist about the treatment options that you are considering and continue to have your liver function tests done. It is best if your doctor, specialist and natural therapist are able to consult directly with one another. If a natural therapist suggests that you stop seeing your medical specialist or doctor, or stop a course of pharmaceutical medicine, you should consider changing your natural therapist. If you decide to use complementary therapies, it is vital that you see a practitioner who is properly qualified, knowledgeable and wellexperienced in working with people who have hepatitis. Additionally, they should be members of a relevant professional association. Phone the Hepatitis Helpline (see page 64) for more information and the contact details of relevant professional associations. • Hepatitis NSW.
• How have the outcomes of the therapy been measured?
Hep Review
To access any of the above mentioned articles, please phone the Hepatitis Helpline.
Edition 77
June 2012
63
support and information services Hepatitis Helpline
Family and relationship counselling
For free, confidential and non-judgemental info and emotional support, phone the NSW Hepatitis Helpline. We offer you the opportunity to talk with trained phone workers and discuss issues that are important to you. We also provide referrals to local healthcare and support services. • 9332 1599 (Sydney callers) • 1800 803 990 (NSW regional callers).
If hep C is impacting on your family relationship, you can seek counselling through Relationships Australia. Call them on 1300 364 277.
Prisons Hepatitis Helpline
Sexual health clinics
A special phone service provided by the Hepatitis Helpline that can be accessed by New South Wales inmates and prison staff. Call this free and confidential service by using the prison phone or by calling the numbers above. Advice on food and nutrition
Dietitians work in hospitals and community health centres, where there is usually no charge for their services. Alternatively, private practitioners are listed in the Yellow Pages. For information on healthy eating and referral to local dietitians, contact the Dietitians Association of Australia on 1800 812 942 or go to www.daa.asn.au General practitioners
It is important that you have a well-informed GP who can support your long-term healthcare needs. Your GP should be able to review and monitor your health on a regular basis and provide psychological and social support if needed. The Hepatitis Helpline may be able to refer you to doctors and other healthcare workers in your area who have had hep C training. Alcohol and other drugs services
People who inject drugs and want to access peerbased info and support can phone NUAA (the NSW Users & AIDS Association) on 8354 7300 (Sydney callers) or 1800 644 413 (NSW regional callers). NSW Health drug and alcohol clinics offer confidential advice, assessment, treatment and referral for people who have a problem with alcohol or other drugs. Phone the Alcohol & Drug Information Service (ADIS) on 9361 8000 (Sydney) or 1800 422 599 (NSW).
Family Drug Support
FDS provides assistance to families to help them deal with drug-issues in a way that strengthens family relationships. Phone FDS on 1300 368 186. Hep B is classified as a sexually transmissible infection – but hep C is not. Irrespective of the type of hepatitis, these clinics offer hepatitis information and blood testing. They are listed in your local phone book under “sexual health clinics”. They do not need your surname or Medicare card, and they keep all medical records private. Community health centres
Community Health and Neighbourhood Centres exist in most towns and suburbs. They provide services including counselling, crisis support and information on local health and welfare agencies. Some neighbourhood centres run a range of support and discussion groups and activities that may range from archery to yoga. Look in your White Pages under Community Health Centres. Culturally and linguistically diverse communities
The Multicultural HIV and Hepatitis Service provides services for people from culturally and linguistically diverse backgrounds. To access hep C information in languages other than English, visit www.multiculturalhivhepc.net.au Additionally, the Hepatitis Helpline distributes information resources in some languages. The Australasian Society for HIV Medicine (ASHM) has a basic information factsheet, Hepatitis C in Brief, in eight community languages. Contact ASHM on 8204 0700 or www. ashm.org.au NSP
Your local Needle and Syringe Program (NSP) may be a valuable source of hep C information and local support. For your nearest NSP, contact the Hepatitis Helpline.
64
www.hep.org.au
support and information services Legal advice
The HIV/AIDS Legal Centre (HALC) assists people with hep C-related legal issues. They offer advocacy and advice about a number of problems including: discrimination and vilification; superannuation and insurance; employment; privacy and healthcare complaints. For more information phone 9206 2060 or 1800 063 060 or visit www.halc.org.au
Hep Connect peer support program Hep Connect offers support and discussion with volunteers who have been through hep C treatment. This is a free and confidential phone-based service which anyone in NSW can access. Please phone 9332 1599 or 1800 803 990 (free call NSW). Hep C Australasia online peer support
This Australasia-wide online internet community offers online support. You can start your own conversation thread or take part in existing threads, offer your point of view or share your experiences. Just visit www.hepcaustralasia.org AHCS online hep C support forum
Australian Hepatitis C Support – an online forum aimed at sharing hep C information and support: www.hepcaustralia.com.au Central Coast support groups
For people on treatment, post treatment or thinking about treatment. The groups provide an opportunity for people going through a similar experience to network and support each other in an informal and confidential atmosphere. For info, phone 4320 2390 or 4320 3338. Gosford: 5.30pm-7pm on the 3rd Thursday of each month at the Health Services Building, Gosford Hospital (note at this stage due to staffing we will not be running an evening Gosford group in May or June). Wyong: 1pm-2.30pm on the first Thursday of each month at the Wyong Health Centre, 38 Pacific Hwy.
Coffs Coast hep C support group A peer support group for people living with or receiving treatment for hep C. Meets on 2nd Tuesday, every month 4.00-5.30pm at Coffs Harbour Community Village, Earl Street Coffs Harbour. For info phone Helen Young, Social Worker, Coffs Harbour Health Campus on 6656 7846. Coffs Coast family and friends support group
A self directed peer support network for family and friends of those living with or receiving treatment or recovering from hep C. For info, phone Debbie on 0419 619 859 or Corinne on 0422 090 609. Hunter hep C support services
A service for people of the Hunter region living with hep C. It is run by healthcare professionals working with hep C treatment and care and based at John Hunter Hospital, New Lambton. For info, phone Carla Silva on 4922 3429 or Tracey Jones on 4921 4789. Nepean hep C support group
Guest speakers to keep you informed about hep C. Family and friends are more than welcome. Light refreshments and supper are provided. Held in the Nurse Education Dept. Lecture Room (Somerset Street entrance), Nepean Hospital. For info, phone Vince on 4734 3466. Northern Rivers liver clinic support group
An opportunity for people considering or undergoing treatment, or who have completed treatment to get know each other. For info, phone 6620 7539. Port Macquarie hep C support group
Peer support available for people living with or affected by hep C. For info, phone Lynelle on 0418 116 749 or Jana on 0412 126 707 or 6588 2750. Wollongong hep C support group
A support group for people living with, receiving or have received treatment for hep C. Meets 1st Tuesday most months, 10am-11.30am. Morning tea provided. For more info, phone the Liver Clinic at Wollongong Hospital on 4222 5181. Family and friends are also welcome.
Hep Review
Edition 77
June 2012
65
promotion
Bathurst region hepatitis clinic A free hepatitis clinic is available at Bathurst Base Hospital. It offers clinical care, nurse Image via Google Images support, lifestyle education, monitoring of side-effects and referrals to other services. You will just need a referral from your local GP to attend the clinic. This is a great opportunity to finally treat your hep C with the confidential support of our team. Contact your GP for a referral today.
promotion The most precious gift We hope that all readers – including those people living with hep C – will consider registering to donate their body organs. Transplanting a hep C infected liver for someone who already has hep C makes good sense if the newly transplanted liver is in a reasonably healthy condition (i.e. non-cirrhotic) and other livers are not available for that person at the time. It is always advisable to discuss your choice with family members and hopefully convince them to also undertake this wonderful act of giving life. People seeking more information about donating their liver should contact Donate Life, the organisation that coordinates organ donation.
Please phone 02 6198 9800.
• For more info, contact Katherine McQuillan on 6330 5866 or 0407 523 838
A historical perspective – April 1997 Headlines from 15 years ago: • Alarming HCV trends (42k notifications in NSW) • Time to act • Speaking to your MP • Europe’s safe injecting rooms hailed • Pre-packaged interferon available • Hunter support group started • HCV – your first 100 days • Bleaching fits a user’s safety guide • Test counselling • Diagnosis – a doctor’s view (Alex Wodak) • HCV and the Steel City • Living with Hepatitis C (book review by Bob Batey) If you are interested in any of the above articles, phone the Hepatitis Helpline to chat about the item or request a copy. • Taken from The Hep C Review, Edition 19, Nov, 1997.
66
www.hep.org.au
Stay up to date with what’s happening in the hepatitis sectors. Take a look at the WDP website. It includes a training directory and has information and resources on harm reduction and health promotion, and provides updates on upcoming events. ASHM runs ongoing WDP initiatives to address the priority population areas identified in HIV, sexual health and hepatitis strategic policies, so keep an eye on the training directory for details. We invite you to use our website as a promotional and communication tool to keep your colleagues and other interested parties informed. Contact us at wdp@ashm.org.au or phone Ronnie Turner, Program Manager, 02 8204 0722.
www.wdp.org.au
noticeboard
acknowledgements
Upcoming events
Editor/design/production: Paul Harvey Editorial committee: Tim Baxter Paul Harvey Thuy Van Hoang Steve James Stuart Loveday Lia Purnomo Rhea Shortus Andrew Smith
Eighth Australasian Conference on Viral Hepatitis. Auckland 10-12 September 2012. www.hepatitis.org.au
Hep Review advisors: Dr David Baker, Prof Bob Batey, Ms Christine Berle, Prof Greg Dore, Ms Jenny Douglas, Prof Geoff Farrell, Prof Jacob George, Ms Sophia Lema, Prof Geoff McCaughan, Mr Tadgh McMahon, Dr Cathy Pell, Ms Ses Salmond, Prof Carla Treloar, Dr Ingrid van Beek, Dr Alex Wodak
Complaints If you wish to make a complaint about our products or services, please visit our website for more information: http://tinyurl. com/28ok6n2
S100 treatment advisor: Kristine Nilsson (AGDHA) Proofreading/subediting: Prue Astill Christine Berle Adrian Rigg
Or see right for our phone number and postal address.
First dog on the moon comic: Andrew Marlton
Do you want to help?
Image courtesy of Google Images
We are a membership organisation, governed by a board elected primarily from our membership. We are also a community organisation dedicated to serving and representing the interests of people across New South Wales affected by hepatitis, primarily hep C.
Contact Hep Review: ph 02 9332 1853 fax 02 9332 1730 email pharvey@hep.org.au text/mobile 0404 440 103 post Hep Review, PO Box 432, Darlinghurst NSW 1300 drop in Level 1, 349 Crown St, Surry Hills, Sydney
As both a membership and community organisation, we actively seek your involvement in our work and want to highlight options: • serving on our board of governance • taking part in our C me community advocacy project • providing content for Hep Review and Transmission Magazine. • proofreading for Hep Review and other Hepatitis NSW publications • magazine mailout work • office admin volunteering (including focus testing of resources) • local awareness raising • becoming a media speaker or C-een & Heard speaker. Want to find out more? Please phone the Hepatitis Helpline (see right).
Hepatitis Helpline: 1800 803 990 (NSW) 9332 1599 (Sydney) Hepatitis NSW is an independent community-based, non-profit membership organisation and health promotion charity. We are funded by NSW Health. The views expressed in this magazine and in any flyers enclosed with it are not necessarily those of Hepatitis NSW or our funding body. Contributions to Hep Review are subject to editing for consistency and accuracy, and because of space restrictions. Contributors should supply their contact details and 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 graphics or cartoons. ISSN 1440 – 7884 Unless stated otherwise, people shown in this magazine are taken from Creative Commons online libraries (e.g. www. flickr.com). Their images are used for illustrative purposes only and they have no connection to hepatitis.
Hep Review
Edition 77
June 2012
67
Over the past 10-20 years tattooing, piercing and other forms of body art have become increasingly popular and have entered the cultural mainstream. As a consequence, the body art industry has experienced phenomenal growth and, more recently, an increase in non-professional or “backyard” tattooing and piercing enhanced by the ready availability of instruction, equipment and “tools of the trade” on the internet. The Artsafe working group was formed initially to promote professional and safe body art, as well as to provide health and safety information for visitors and operators at the 2010 Tattoo and Body Art Expo in Sydney. A successful partnership was formed between the Professional Tattooists Association of Australia (PTAA), Hepatitis NSW and representatives of Public Health and Health Promotion in western and south western Sydney, with the partnership later being joined by TAFE/OTEN NSW. As body art has become more mainstream, and the incidence of “backyard” practices rises, industry and health professionals are presented with significant challenges and opportunities. The rise of the “backyarder” creates a significantly high risk of infection, both bacterial and blood-borne. These illicit operators are not subject to the same health and safety requirements as registered artists, who undergo regular inspection to ensure they are meeting the regulations of the Public Health (Skin Penetration) Regulation under the Public Health Act. The ArtSafe group provides a platform from which to begin addressing these challenges. The group has been active in the development of resources to improve consumer awareness of blood-borne virus risks from unsafe body art. A checklist has been produced to empower consumers in their choice of artist. By providing a list of key questions that should be asked, consumers will be reminded of the importance of choosing professional operators who demonstrate good practice. A suite of posters and display units which support the checklist cards have been distributed to participating studios across NSW. The main objective of ArtSafe is to steadily work towards a formal requirement for all body artists in NSW to hold a basic sterilisation qualification, and have an understanding of transmission of bloodborne infections. Currently this qualification is a requirement in order to operate in Queensland; however it will require amendments to the NSW Public Health Act in order to be a prerequisite in NSW. Ultimately the ArtSafe group would like to see a reduction in demand for unskilled home tattooing and piercing, by promoting the safety benefits of trained professional tattooists and body artists. The group are also exploring opportunities for the restriction of online body art equipment, which will require legislative changes. Under the leadership of TAFE/OTEN and with support of an Industry Reference Group, an online learning course has been developed specifically for the tattoo and body art industry. The focus of the course is sterilisation, management of stock and compliance with infection control policies and procedures. It provides the first step toward an expectation of training of all NSW operators. To order a quantity of ArtSafe Checklist cards (FREE + postage) contact the Lemongrove Unit on: 4734 3877 For information about the TAFE training module contact : Rogers Kumar 02 97158530.
68
www.hep.org.au