#56 • July 2012
Community News
TOURING SOUTH AUSTRALIA 16–27 July 2012
WIN!
Remember that from now on, the best letter printed in each issue of the Hepat itis SA Community News will receive a $2 5 shopping voucher. Write to us about anything to do with the magazine, the Council, living with hepatitis C, or living well ideas.
Hepatitis SA provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Fax: Web: Email:
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepsa.asn.au
STAFF
Email the editor at james@hepatitissa.asn.au
Executive Officer: Kerry Paterson Administration: Megan Collier Kam Richter Info and Support Line Coordinator: Deborah Warneke-Arnold
SA Health has contributed funds towards this program.
Info and Support Line Volunteers: Fred Will Debra Michele Steve Karan Louise Janette Educators: Nicole Taylor Michelle Spudic (Rural) Dale Halliday Dan Hales
About the Cover
Peer Education Coordinator: Maggie McCabe Peer Educator Mentor: Fred Robertson Peer Educators: Karan Krystal Megan Penni
Mark Will
Photos © Steven Rhall: Actors Leroy Parsons and Maurial Spearim in Body Armour (see page 2) Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepatitissa.asn.au.
Information and Resources Coordinator: Cecilia Lim Information and Resources Volunteers: Amanda Gauri Mark Phil Philip Yvonne
Contents
Publications Officer: James Morrison
2
Body Armour
Information and Resources Officer: Rose Magdalene
4
Farewell, Archway
ICT Support Officer: Bryan Soh-Lim
6
The Cost of Drugs
Librarian: Joy Sims
9
CPIX Returns
BOARD
10
Calming the C
11
Meet ঠ!ۦۦ
12
Being Mindful
15
A New Record
15
Killing Liver Cancer
16
HepSA Library Online
Chairperson: Arieta Papadelos Vice-Chairperson: Currently vacant Secretary: Stefan Parsons Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Bill Gaston Tess Opie
Catherine Ferguson Carol Holly Jeff Stewart
Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Hepatitis SA members and the general public. Watch where you point that thing!
r See p2 f o RMOUR A Y D O B r WORLD o f 5 1 p d an TIS DAY I T A P E H RD S RECO S E N N I GU PT ATTEM
Hepatitis SA Community News July 2012 • 1
Meet Dannii, Harley and Rose: three teenagers, three individuals. Three modernday warriors on a quest for identity, fuelled with attitude and armed with ink and steel. When their paths cross unexpectedly, they realise that they might have found more than they were looking for. And that sometimes, the best way to look forward is by looking back… Body Armour is the next instalment from the team behind the multi awardwinning Chopped Liver (which has been seen by almost 10,000 people in over 150 communities, schools and prisons across Australia). Fresh, sassy and razor-sharp, Body Armour has been specifically designed for high school audiences, to raise awareness of hepatitis C in the indigenous community and beyond. The story follows the journey of three teenagers as they experiment with at-risk activities such as piercing, tattooing and blood sharing. Timely comparisons to ancient body modification rituals gently remind us of the importance of history and culture in the search for identity and the need to belong. Hepatitis SA Community News 2 • July 2012
Hepatitis SA and the Aboriginal Health Council of SA (AHCSA) are very excited to announce that Australia’s premier Aboriginal theatrical group, Ilbijerri Theatre Company, will be bringing their new production, Body Armour, to South Australia in 2012, after staging two successful tours of the play Chopped Liver throughout SA in 2007 and 2009. Body Armour addresses the highly topical issue of hepatitis C/blood-borne virus
transmission and body art and modification, especially body-piercing and tattooing, which continues to grow as a phenomenon within youth culture. Body Armour also looks at other forms of hepatitis C transmission, including ‘blood sisters’ and injecting drug use. While the majority of hepatitis C transmissions occur through sharing injecting equipment, the popularity of body art among young people and the potential for
Photos © Steven Rhall
transmission of blood-borne viruses via piercing and tattooing means educating young people about hepatitis C and assisting them to become ‘blood aware’ is an extremely valuable exercise in attempting to reduce new infections. The play is specifically aimed at young Aboriginal people, but the messages contained within are universal and therefore accessible and important for all youth. In the lead-up to World Hepatitis Day on July 28, Hepatitis SA are pleased to invite a number of South Australian schools to participate in this year’s tour by staging performances of Body Armour within the schools for their students and, where appropriate, their local communities. The tour will take place in regional centres including Port Augusta, Ceduna, Port
Lincoln and Maitland, as well as four metropolitan schools (Kaurna Plains, Warriappendi School, Le Fevre and Christies Beach high schools). Specific schools were approached during the programming process due to their links with Aboriginal communities, high proportion of Aboriginal students enrolled, and commitment to principles of health promotion and reconciliation. The response has been extremely positive, with some schools registering in excess of 100 students. Hepatitis SA and AHCSA are looking forward to building partnerships between the individual regional schools and the local AHCSA regional member organisations, so that young Aboriginals and Torres Strait Islanders are comfortable accessing their local Aboriginal communitycontrolled health service.
Following the SA tour of Body Armour, Hepatitis SA plans to revisit schools participating in this project to work alongside AHCSA local member organisations in delivering a series of hepatitis C and other blood-borne viruses health education workshops to the students, focusing on bodypiercing and tattooing. Hepatitis SA is once again looking forward to working with Ilbijerri Theatre Company, the Aboriginal Health Council of South Australia and its regional member organisations and the schools involved in this project. Hepatitis SA wishes to thank SA Health for funding this exciting project, and the STI and BBV Section for their support. For further enquiries about the SA tour, contact me at Hepatitis SA on 1300 437 222 or dan@hepsa.asn.au. Dan Hales Hepatitis SA Community News July 2012 • 3
Farewell, Archway Peer education in an atmosphere of trust and camaraderie Anglicare’s Archway program in Port Adelaide provided long-term residential treatment for adults with severe alcohol and or other drug issues, and co-occurring mental health disorders. The program helped participants develop strategies to maintain healthy lifestyles free from alcohol and/or drugs. The Archway will be closing its doors at the end of June this year after providing more than 50 years of rehabilitation services. Outreach hepatitis C peer educator Karan began providing hepatitis C peer education at the Archway in 2009, and has remained a regular peer for the residents ever since. Here Karan recounts her time at the Archway as an outreach hepatitis C peer educator. I have met some of the most amazing and courageous people from all walks of life with a multitude of skills and abilities who, when I meet them, are beginning a recovery program from alcohol and drug addiction. Archway is a rehab at Port Adelaide which was established in the 1950s for alcohol and drug withdrawal. It has seen various programs and managers over the years, with Anglicare being the last of the parent bodies overseeing this service. The supportive atmosphere that permeates the program comes from the deep Hepatitis SA Community News 4 • July 2012
Before…
camaraderie amongst the residents, along with some down-to-earth counsellors. Initially I didn’t know what to expect working at the Arch. I did, however, find a little paradise in Port Adelaide. Archway is a great set-up, and it has a beautiful garden. At times I have helped out by bringing in plants or pulling a few weeds. I have also brought in beads and shells to make Celtic dreamcatchers, as well as other art projects which have all been popular with the residents, both as activities and as a way in which engagement and conversations about hepatitis C have occurred. I feel creativity is a great need in these sorts of places, as it helps clients with finding other interests, hobbies, skills, music, gardening... Having art around you helps inspire more creativity—it encourages self-esteem. I saw that while creating the art, it created an atmosphere of trust and was helpful in getting conversations going.
It is another way of imparting knowledge about hepatitis C. Most of my peer education with the clients has been on a one-on-one basis with people who have just come into the program. During that initial contact we discuss issues that help to assess who, what, when, where and how peer education can assist them. By engaging with the Archway clients I am able to let them know what hepatitis C treatment options are available, where treatment can be accessed, and how they can get the ball rolling. I can refer them to contact a viral hepatitis nurse who can start them off with the treatment process. I also discuss hepatitis B risks and vaccination. Through the Port Adelaide/ Enfield Council I have been able to organise hepatitis B vaccination for clients as well as staff. It took a lot of work, but it was a great achievement to have a lot of people vaccinated. For some Archway clients who may already have cirrhosis,
decreasing their risks of other infections is really important. The biggest work I do as a peer educator is to dispel myths, as this ultimately alleviates a lot of fear and stigma about hepatitis C, especially fear directed towards people affected by the hepatitis C virus. Some of the Archway residents have family and friends who have hep C; residents who with peer education will be able to share their knowledge with these friends and family members on the latest treatment options. It’s good to give a little more understanding of how people are affected by HCV.
Another highlight of the peer education program at the Archway was the Archway Mural. Initially I was working towards doing a mural on a wall there when we (Archway staff and peer education team) decided, ‘Why not paint the water tank?’ which, at the time, was a large eyesore in the midst of their garden. I organised a meeting with the Archway residents where we brainstormed some ideas around images and text about hepatitis C and healthy livers. The brainstorming was a great start to weeks of ongoing painting, collaging,
writing, designing, stencilling, admiring, discussing and conversing around the tank. The mural features some fantastic indigenous designs, poetry, some ‘love your liver’ messages, and is now a predominantly peaceful blue object with beautiful reflections imposed upon its surface that depict some very significant times in people’s healing and changing. The Outreach Hepatitis C Peer Education and Support Program has been very grateful to have worked with the staff and residents of the Archway.
…and after!
Hepatitis SA Community News July 2012 • 5
The Cost of Drugs New report proposes radical new approach [From The prohibition of illicit drugs is killing and criminalising our children and we are all letting it happen: A report of a highlevel Australia21 Roundtable] It is time to reopen the national debate about drug use, its regulation and control. In June 2011 a prestigious Global Commission stated that the 40-year “War on Drugs” has failed, with devastating consequences for individuals and societies around the world. It urged all countries to look at the issue anew. In response to the Global Commission report, Australia21, in January 2012, convened a meeting of 24 former senior Australian politicians and experts on drug policy, to explore the principles and recommendations that were enunciated by the Global Commission. The group also included two young student leaders, a former senior prosecutor, a former head of the Australian Federal Police, representatives of Families and Friends for Drug Law Reform and a leading businessman. The Australian group agreed with the Global Commission that the international and Australian prohibition of the use of certain “illicit” drugs has failed comprehensively. By making the supply and use of certain drugs Hepatitis SA Community News 6 • July 2012
criminal acts, governments everywhere have driven their production and consumption underground and have fostered the development of a criminal industry that is corrupting civil society and governments and killing our children. By defining the personal use and possession of certain psychoactive drugs as criminal acts, governments have also avoided any responsibility to regulate and control the quality of substances that are in widespread use. Some of these illicit drugs have demonstrable health benefits; many are highly addictive and harmful when used repeatedly. In that respect they are comparable to alcohol and nicotine, which are legal in Australia and, as a result, are under society’s control for quality, distribution, marketing and taxation. Australia has made great progress in recent decades reducing the harm from tobacco, a drug which kills half the people who use it. A substantial proportion of Australia’s street and household crime is a direct consequence of the trade in illicit drugs and the need for dependent users to find money to acquire drugs. Large numbers of young people who experiment with these drugs are criminalised by the enforcement of prohibition laws – even though those thus criminalised are only
a minority of the huge numbers of experimenters. The current policy of prohibition discredits the law, which cannot possibly stop a growing trade that positively thrives on its illegality and black market status. Our prisons are crowded with people whose lives have been ruined by dependence ndence on these drugs. Like ke the failure of the prohibition on of alcohol in the USA from m 1920 to 1933, the current ent prohibition of illegal drugs rugs is creating more harms than an benefits and needs to be reconsidered by the Australian ralian community. Many other her countries are starting to o review this area. A decade ago, and with excellent ellent results, Portugal decriminalised the possession ession of small quantities es of all illicit drugs consistent nsistent with personal sonal consumption. ption. A number of other countriess have adopted versions of this approach. pproach. In December er 2011, the current Presidents of 12 Central and South American countriess called for the use of ‘market et mechanisms’ in responsee to illegal drugs. In a 2011 US Gallup poll, 50% supported ed the legalisation of marijuana uana with 46% opposed.. Every year ar some 400 Australians ans die from using illicit drugs. ugs. Thousands of otherss suffer the short
and long term health consequences of drug dependence, unsafe injecting practices and infections. Their families also suffer with them. Discussion of drug policy in recent years has been largely absent from the Australian political agenda except as an excuse for being tough on law and order. Fifteen years on from a landmark decision by the Howard government to embark on its “Tough on Drugs“ policy and to
override a 6:3 Ministerial Council on Drug Strategy decision to support a trial of the use of prescribed heroin in the management of heroin dependent users, illicit drugs continue to be widely available on the streets and in Australian prisons and a culture of illicit drug use flourishes among young people. Courts and prisons
continue to be dominated by those involved in drugrelated crime, with few positive results, even though prevalence statistics suggest that only about three per cent of marijuana users are apprehended in a given year. Fear of illicit drugs, their culture and consequences is widespread among parents. If policy change is contemplated parents of young children will need firm reassurance that the new policies will not
exacerbate the problems. If politicians are to move to change this culture they also will need to be confident that any change will improve, not worsen, the current situation. A growing body of international evidence demonstrates that such concerns can be alleviated. Both heroin and marijuana have valuable medical (continued over page) Hepatitis SA Community News New July 2012 • 7
The Cost of Drugs (from previous page)
uses, but it became virtually impossible for patients to continue to benefit from these drugs after they were prohibited, even though the international treaties have provisions permitting medical and scientific use of the otherwise proscribed drugs. In other parts of the world, the medical use of cannabis is now being enabled and the treatment of heroin dependent users with prescribed and carefully controlled heroin has proven medically and socially effective, both in improving the health and social wellbeing of dependent users, and in preventing crime. Heroin was legal and could be prescribed by doctors in Australia until 1953. That is, heroin became a problem after, and not before, it was prohibited. The prohibition of heroin in Australia in 1953 was severely criticised at the time by the then leaders of the medical profession. Cannabis was included in the official list of medical drugs in the USA until 1937. A number of alternative options for managing illicit drugs in Australia were discussed, including: de-penalisation, decriminalisation, legalisation, regulation and taxation. Prohibition places the emphasis on law enforcement and criminalisation, whereas Hepatitis SA Community News 8 • July 2012
the other options make it possible to focus primarily on the health and social effects of drug use. Governments in Australia often use a harsh rhetoric when referring to drug use and drug users. There are clear contrasts with two other psychoactive drugs in widespread use in Australia, nicotine and alcohol. They are not prohibited, despite creating far more health, social and economic costs to our people and society than do the currently illegal drugs. In the case of nicotine, use has diminished as regulation, taxation and social control have been invoked. In the case of alcohol, there have been identifiable social harms as earlier regulatory and social controls have been relaxed. But neither drug is prohibited. Instead, they are controlled not by organised crime, but by governments. The group did not propose a specific set of policy changes. Rather it saw the need to promote a new national discussion about prohibition of drug use. It proposed placing the onus on governments and the community generally to consider the range of available alternatives to the current criminalisation approach, and to develop one which is more effective. The unacceptably high number of drug deaths among young Australians cannot be allowed to continue.
There is a particular need to engage parents and young people in considering the benefits and costs of a shift away from prohibition. A bipartisan political approach to this tricky issue is highly desirable. The move against prohibition is gathering momentum in other countries across the ideological spectrum as communities around the world place responsibility for the costs of prohibition where it belongs: with those legislators who continue, by default, to support the international prohibition approach. The group also recognised, however, how difficult this issue is for politicians. Sometimes, approaches such as the emphasis on law enforcement are popular despite being proven to be ineffective and more rational approaches which are proven to be effective can be unpopular in the beginning. Another difficulty is trying to make political progress in this difficult area within a single electoral cycle. Reform will have to be slow, cautious, step-wise and incremental. The full report can be found at www.australia21.org.au// publications/press_releases/ Australia21_Illicit_Drug_ Policy_Report.pdf.
CPIX Returns! CPIX 2012 launches at Adelaide Northern Headspace CPIX is a collaborative project between Hepatitis SA and Adelaide Northern Headspace, taking place in June 2012. The project combines education and conversation with the creation of visual artwork to give young people the opportunity to communicate their ideas to do with hepatitis C prevention, especially in the context of healthy body art.
C prevention and safer body art, which will then be applied to life size mannequins. The completed mannequins will be exhibited at the Adelaide Northern Headspace office (2 Peachey Road, Edinburgh North—formerly Elizabeth West). For more information, please contact Nicole by email at nicole@hepsa.asn.au or call 08 8362 8443.
The education will focus on hepatitis C transmission and harm minimisation; hepatitis C in the context of body modification, including tattooing and piercing; and the social and emotional impacts of living with hepatitis C.
Photo CC Minneapolis Institute of Arts [flickr.com/photos/minneapolisinstituteofarts/5842806040]
Hepatitis SA has run CPIX with great success with a range of organisations in the past, but this year brings a new flavour— participants will design ‘tattoos’ about hep
Hepatitis SA Community News July 2012 • 9
Calming the C • Information and support in a confidential, friendly environment • Speak to others who have had treatment • Partners, family and friends welcome Meet us fortnightly on Tuesdays, 12.30pm-2.30pm at Hepatitis SA, 3 Hackney Rd, Hackney To get more information, phone 8362 8443 or 1300 437 222. The dates for the rest of 2012: Tuesday, 10 July Tuesday, 24 July
Tuesday, 4 September Tuesday, 18 September
Tuesday, 13 November Tuesday, 27 November
Tuesday, 7 August Tuesday, 21 August
Tuesday, 2 October Tuesday, 16 October Tuesday, 30 October
Tuesday, 11 December
Friday, 22 June Friday, 27 July Friday, 24 August Friday, 28 September Friday, 26 October Friday, 23 November
Hepatitis SA Community News 10 • July 2012
Meet ঠ!ۦۦ Meet ঠۦۦ, a.k.a. O’liver! Over 950 children and their families were recently introduced to their “precious liver” in a hepatitis B awareness raising project targeting seven local Chinese ethnic schools. The ቢঠۦ۴ (My Precious Liver) project disseminated hepatitisrelated information to the wider Chinese community. The focus of the information was around hepatitis B but basic information relating to general liver health was also included. Hepatitis B affects 170,000 to 187,000 people in Australia. Almost half (49%) are from countries in the Asia-Pacific region which includes East and South-east Asia. An Australian study found that among people with chronic hepatitis B in Australia who speak little or no English, the largest number are Chinese
speakers. Other er studies indicated relatively ively low level of understanding ng of hepatitis B in the wider Chinese and Vietnamese communities ommunities and that one in n three Chinese peoplee in Australia who reported having tested positive for hepatitis B did not see a doctor regularly to monitor their condition. There are seven n Chinese ethnic schools in metropolitan Adelaide mostly run by community groups with support from the Department for Education and Child Development and the Ethnic Schools Association. Information to the school communities are delivered in the form of bilingual
packs tailored for teachers/school council members, primary school children, high school children, adult students and parents. The children are also invited to participate in a drawing competition. Teachers and school organisers gave feedback and suggestions on translations and our approach to the project. A new information leaflet was also developed in response to queries and suggestions from parents and teachers. The project, funded by a small grant from Hepatitis Australia, ends in June, but follow up activities are being planned in response to requests for information sessions for parents in the school communities. For more information, contact Cecilia on 8362 8443 or email cecilia@ hepatitissa.asn.au. Hepatitis SA Community News July 2012 • 11
Being Mindful The effectiveness of Mindfulness-Based Stress Reduction techniques for the management of symptoms of chronic hepatitis C The flow of blood symbolizes life, well-being and the bonds of family. For people living with chronic hepatitis C virus (HCV) however, blood can also represents stress, isolation, fear of discrimination and transmission, and anxiety concerning the future. HCV is a blood-borne virus with many physical and psychological symptoms. Only a small percentage of people living with chronic hepatitis C (CHC) decide to undergo pharmaceutical treatment each year indicating a need for the ongoing development of alternative therapies, such as mindfulness-based stress reduction (MBSR). Extensive trials of MBSR have shown it to be a useful therapy in managing symptoms of a wide variety of chronic illnesses, many of which exhibit similar symptoms to CHC. The interest of the CHC population in alternative therapies is indicated by the large number of people who already use complementary and alternative treatments in an attempt to manage their symptoms (Harley et al 2003). Harley et al (2003) found that due to the difficulties associated with pharmaceutical treatment, many people with CHC use alternative therapies to help manage their symptoms. Koerbel and Zucker (2007) assert that MBSR would offer techniques that would assist in alleviating physical symptoms and would reduce the stress and anxiety associated with CHC. The MBSR program involves Hepatitis SA Community News 12 • July 2012
eight weekly classes, with guided meditations and yoga exercises and after the sixth week a daylong silent retreat is held (Koerbel and Zucker 2007). Participants learn to direct mindful attention towards their daily routines and are taught the process of scanning the body, consciously noting each part, beginning at the feet and progressing to the head. Keeping a daily record of mindfulness exercises and experiences is encouraged for all participants and daily meditation of 45 minutes, is required as homework (Reibel et al 2001; Kerr et al 2010) although Reibel et al (2001) indicated this could be reduced to 20 minutes. These classes provide a social and supportive environment that can reduce the isolation felt by many people living with chronic HCV. Vollestat et al (2010) identified that engaging in group related treatment can also be beneficial for anxiety and Hozel et al (2010) noted that the group interaction and education, about methods of coping with stress, could be factors involved in positive outcomes of MBSR. The therapeutic process of MBSR is based upon the ‘mindfulness’ concept of Buddhist meditation (Majumdar et al 2002). Kabat-Zinn (cited in Kerr et al 2010, p. 81) describes the program as a method designed to teach ‘participants how to pay attention in a particular way: on purpose, in the present moment, and non-judgmentally’. MBSR was developed in 1979 with the aim of integrating mindful
attention and awareness into medical settings (KabatZinn 2003). The cultivation of mindful attention and awareness enables a person to experience events and emotions in their ‘bare form, stripped of … associative meanings’ (Rapgay and Bystrisky 2009, p.3). Rapgay and Bystrisky believe that MBSR can provide insight into the causes of thoughts and feelings and that identifying these triggers will enable the development of productive rather than unproductive responses. Reibel et al (2001, p.2) describes mindfulness as ‘moment to moment awareness that is intentionally nonreactive and non-judgmental’ and agrees that MBSR enables practioners to ‘respond consciously rather than to react automatically to events’ (Reibel et al 2001, p.2). Mindful attention and awareness of blood allows it to run free of emotional association and would help people living with CHC to alleviate anxiety concerning transmission and future symptoms. Through developing MBSR techniques feelings and thoughts that arise, when focusing on the moment, can be noticed without habitual reactions or self-judgment. The MBSR techniques involve learning to separate yourself from events, so that they can be observed without habitual reaction. This technique of separation and observation is named ‘repercieving’ by Shapiro et al (cited in Kerr et al 2010, p.82). Kerr et al (2010) clarify this concept by stating that reperception, enables
Photo CC John WIlliams [flickr.com/photos/johnwilliamsphd/3340767589]
MBSR practioners ‘to observe present experience objectively, and in turn, respond with greater consciousness …and emotional flexibility’. Through mindfulness and reperception, a person living with CHC could notice her thoughts and concerns without reaction or judgment. Rather than becoming overwhelmed with anxiety and distress, she could let go of her stress and the thoughts causing it and return to her original focus on day to day events. The process of letting go is described by Rapgay and Bystrisky as similar to ‘a child learning to let go of a mother’s hands in order to take the first steps on its own’. By diminishing reactions to symptoms of chronic illness and letting go of events and thoughts, Kerr et al assert that people can ‘live fulfilling lives despite the illness’. The ability to develop ‘an observing attitude and relationship towards illness rather than trying to change the illness itself’ (Kerr et al 2010, p. 91) would have several benefits for CHC. Koerbel and Zucker refer to a study by Robinson et al (2003) when asserting that ‘the ability to change perception of stress and stress-related events can affect immune function positively’. Robinson et al studied the benefits of MBSR on the effect of stress on the immune system, for people living with HIV.
Improvements in immune functioning were reported, implying, according to Koerbel and Zucker, that ‘the ability to change perception of stress and stress-related events can affect immune function positively’. Many of the symptoms of CHC occur due to the constant immune response to the virus, according to Franciscus (2011) therefore the study by Robinson is significant to CHC. Koerbel and Zucker assert that altering the perception of illness can influence the impact of symptoms upon the lives of people with chronic illness. MBSR has been successfully trialed for managing symptoms of a variety of chronic illnesses, many of which have similar physical and psychological manifestations as CHC. Results from the study by Reibel et al demonstrated that the MBSR program had ‘significantly enhanced health-related quality of life, reduced physical symptoms and decreased psychological distress’ (Reibel et al 2001). This study involved 136 participants, diagnosed with a range of different illnesses, including cancer, arthritis, lupus and diabetes; participants also reported fatigue, depression, anxiety, sleep disorders and stress. The positive results indicate that MBSR could be beneficial for people living with CHC as these problems and illnesses are all associated with CHC according to Franciscus (2011).
Research by Tacon et al (cited in Koerbel and Zucker 2007), into the effectiveness of MBSR on anxiety levels of women with chronic heart disease ‘showed significant reduction in anxiety’. This indicates the benefits of MBSR, for treating anxiety suffered by people living with CHC. A study conducted by Majumdar et al, which included people with CHC, concluded that MBSR had created positive changes ‘in their ability to live their daily lives’ (Majumdar et al 2002, p.726). Majumdar et al (2002) discovered that after the eight week program, many of the participants in the study had incorporated regular meditation into their lives. Koerbel and Zucker revealed that this program does not suit all personalities; however Reibel et al reported improvements in symptoms regardless of meditation duration, indicating a degree of adaptability. Practically all the participants completed the program run by Reibel et al), regardless of lifestyle or age, indicating it’s suitability for the CHC population, as they range greatly in age and lifestyle. Follow-up surveys conducted by Majumdar et al (2002) revealed that most of the participants in their study had begun other therapies and had found that MBSR ‘complemented medical and other treatments well’. These results indicate that MBSR would fit with therapy regimes already followed by people with chronic HCV. (continued over page) Hepatitis SA Community News July 2012 • 13
(from previous page)
Reibel et al concluded that MBSR was a successful program for people with chronic illness and 90% of participants ‘gained something of lasting value or importance from the MBSR program’. Skills in mindfulness can be applied to all aspects of daily living and the MBSR program can be incorporated into many lifestyles. Extensive research has proved the MBSR program to be a successful therapeutic process for managing many of the symptoms of chronic illnesses, physical and psychological, including those experienced due to CHC. The anxiety and stress of chronic illness is intensified, for people living with CHC, by fear of discrimination and apprehension concerning the infectious nature of their blood. Depression and isolation frequently occur as a consequence. The weekly group meetings, in the MBSR program, provide skills for managing anxiety and a supportive environment, beneficial for reducing distress and isolation. The adaptability of the program would suit the CHC population and complement the alternative therapies often used. Mindfulness-based techniques can alter the perception of illness, providing methods to manage symptoms and possibly even encourage people to attempt pharmaceutical treatment. The mindfulness techniques, combined with the support offered by the group based program, make MBSR an effective therapeutic process for managing symptoms of CHC. Anne Jackson
Hepatitis SA Community News 14 • July 2012
References Batey, R 2003, ‘Chronic hepatitis C’, Australian Family Physician, vol. 32, no.10, pp. 16-20. Crofts, N, Loveday, S & Kaldor, J 2003, ‘The meaning of hepatitis C for the community’, Australian Family Physician, vol. 32, no.10, pp. 55-58. Harley, H, Shaw, D & Steven, I 2003, ‘Ongoing management of hepatitis C’, Australian Family Physician, vol. 32, no.10, pp. 30-35. Holzel, B, Carmody, J, Vangel, M, Congleton, C, Yerramsetti, S, Gard, T & Lazar, S 2010, ‘Mindfulness practice leads to increases in regional brain gray matter density’, Psychiatry Research: Neuroimaging, vol. 191, pp. 36-43. Kabat-Zinn, J 2003, ‘Mindfulness-Based Stress Reduction (MBSR)’, Constructivism in the Human Sciences, vol.8, no. 2, pp. 73-84. Kerr, C, Josyula, K & Littenberg, R 2010, ‘Developing an Observing Attitude: An Analysis of Meditation Diaries in an MBSR Clinical Trial’, Clinical Psychology and Psychotherapy, vo. 18, pp. 80-93, DOI: 10.1002/ cpp.700 Koerbel, L & Zucker, D 2007, ‘The Suitability of Mindfulness-Based Stress Reduction for Chronic Hepatitis C’, Journal of Holistic Nursing, vol. 25, no. 4, pp. 265-274, DOI: 10.1177/0898010107304742. Loveday, S, Deakin, G & Neophyton, D 2003, ‘Meaning for the person’, Australian Family Physician, vol. 32, no.10, pp. 49-54 Majumdar M, Grossman P, Dietz-Waschkowski, B, Kersig S & Walach, H 2002, ‘Does Mindfulness Meditation Contribute to Health? Outcome Evaluation of a German Sample’, The Journal of Alternative and Complementary Medicine. vol.8, no. 6 pp. 719-730, DOI:10.1089/10755 530260511720 National Institute of Diabetes and Digestive and Kidney Diseases 2008, Autoimmune Hepatitis, viewed 17 November 2011, http://digestive. niddk.nih.gov/ddiseases/pubs/autoimmunehep/#autoimmunedisease Reibel, D, Greeson, J, Brainared, G & Rosenzweig, S 2001, ‘Mindfulnessbased stress reduction and health-related quality of life in a heterogeneous patient population’, General Hospital Psychiatry, vol. 23, no. 4 pp.183192, DOI: 10.1016/S0163-8343(01)00149-9. Rivera, J, Garcia-Monforte, A & Nunez-Cortez, J 1999, ‘Extrahepatic Symptoms as Presenting Manifestations of Hepatitis C Virus Infection’, Journal of Clinical Rheumatology, vol. 5, no. 5 pp. 268-272 Rapgay, L & Bystrisky, A 2009, ‘Classical Mindfulness An Introduction to its Theory and Practice for Clinical Application’, Annals of the New York Academy of Sciences, vol. 1172, pp. 148-162, DOI: 10.1111/j.17496632.2009.04405.x Sievert, W 2003, ‘Antiviral therapy for chronic hepatitis C’, Australian Family Physician, vol. 32, no.10, pp. 36-43 Vollestad, J, Sivertsen, B & Hostmark Nielsen,G 2010, ‘Mindfulnessbased stress reduction for patients with anxiety disorders: Evaluation in a randomized controlled trial’ Behaviour Research and Therapy, vol.49, no. 4, pp. 281-288, DOI: 10.1016j.brat.2011.01.007.
For information on MBSR training venues: • Open Ground Mindfulness Training http://www.openground.com.au/ogcrsadel.html • Mindfulness Centre http://mindfulnesscentre.com/9wkstress.html • Mindful Movement www.mindfulmovement.net.au
A New Record? Guinness World Record for World Hepatitis Day? Absolutely everyone can identify with a record attempt, no matter where you’re from, what language you speak, or how old you are. A record attempt is about setting ourselves a seemingly impossible goal and showing the determination to achieve it. Hence, the World Hepatitis Alliance is planning a Guinness World Record attempt to celebrate World Hepatitis Day 2012 on July 28 by having the most people performing the “see no evil, hear no evil, speak no evil” actions in 24 hours at multiple venues around the world. These actions relate to a proverb known as the three wise monkeys covering their eyes, ears and mouth. There
are many meanings attached to the proverb, but mostly it is used to refer to those who deal with problems by refusing to acknowledge them. This theme has been chosen to highlight the fact that, around the world, hepatitis is being ignored. We need as many people as possible to take part in the record on the same day, to encourage people to confront hepatitis. If we can’t mobilise ourselves, how can we expect governments to mobilise resources to help us? If you would like to join us in this amazing global event and help hepatitis achieve a place in the record books, please visit our website to register: www.hepatitissa.asn.au.
Killing Liver Cancer Scientists have identified a new compound that rapidly kills hepatocellular carcinoma (HCC) cells, the most common form of liver cancer, while sparing healthy tissue. The compound, Factor Qunolinone Inhibitor 1 (FQI1), works by inhibiting an oncogene originally discovered by a team of researchers led by Devanand Sarkar at Virginia Commonwealth University. Recently published in the journal Proceedings of the National Academy of Sciences, the study demonstrates that HCC cells have what is known as an “oncogene addiction” to the transcription factor Late SV40 Factor (LSF). Oncogene addiction is a term used when a cancer cell is found to be dependent on a single gene to survive. Using the compound Factor Qunolinone Inhibitor 1 (FQI1), the scientists prevented LSF from binding to HCC DNA during the transcription process, which is the first step in a series of actions that lead to cell division and duplication. This action caused rapid HCC cell death in laboratory experiments and a dramatic reduction in tumor growth in mouse models with no observable toxicity to normal liver cells. “We may be on the verge of developing a new, effective drug for liver cancer,” says Sarkar. “We never anticipated it would work this well.” Now that FQI1 has been identified, pharmacokinetic studies are being conducted to determine how the drug behaves in the human body. See more at http://tinyurl.com/ FQI1HCC. Hepatitis SA Community News July 2012 • 15
HepSA Library launches online collection The Hepatitis SA library which started years ago as a small repository of books and articles has grown into a specialised library with a significant collection of hepatitis related information. Responding to new technologies and the changing ways in which we look for information and resources, our library has now developed a considerable collection of free-to-access online resources from reputable national and international sources. These include: •
books
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video and audio clips
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brochures and pamphlets
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reports
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useful websites
To access the collection, visit our library home page www. hepsa.asn.au/library and click on the View Catalogue Search Page button. You can choose to search for online resources only or to search
the entire collection. Topics include: treatment, tests and procedures, lifestyle matters (nutrition, mental health etc), drug issues and other risk factors, discrimination, information for different cultures and interest groups, as well as policy and statistical documents. Subject headings are listed on the right side of the page. The headings expand to display subheadings which are useful key words for searches. The online catalogue is easy to use and will give you details of all of the resources. Results of online resources include live links that take you directly to the electronic document. The online collection is available to anyone with access to the internet. The physical collection is available for browsing to anyone but can be borrowed only by members.
Library membership is free. To join, call 8362 8443 (country callers: 1300 437 222) or email cecilia@ hepatitissa.asn.au. The online catalogue is updated weekly. If you would like to receive periodic email updates on new resources in our collection, send an email to cecilia@hepatitissa.asn.au with the subject line “library updates”. In the body of the email, please include your full name, telephone number and preferred email address for receiving the updates.
CLEAN NEEDLE PROGRAM now operating at Hepatitis SA
3 Hackney Rd, Hackney Monday to Friday, 9am-5pm Please ring the CNP doorbell at the front entrance. Hepatitis SA Community News 16 • July 2012
Useful Contacts & Community Links Hepatitis SA
Clean Needle Programs
Provides information, education and support to people affected by hepatitis B and C and to health and community workers. We offer free education sessions, printed information, telephone information and support, referrals and a clean needle program. Hepatitis SA also facilitates Calming the C, a support group for people affected by hepatitis C. Office Tel: (08) 8362 8443 Hepatitis SA Helpline: 1300 437 222 (cost of a local call anywhere in SA).
To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340
MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from non-Englishspeaking backgrounds. (08) 8223 4566
Nunkuwarrin Yunti An Aboriginal-controlled community health service with a clean needle program and liver clinic. (08) 8223 5011
Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8218 0700
SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 1699
Vietnamese Community in Australia (SA Chapter) Provides social services and support to the Vietnamese community, including alcohol and drug education, and a clean needle program. (08) 8447 8821
The Adelaide Dental Hospital has a specially funded clinic where people with hepatitis C who also have a Health Care Card can receive priority dental care. Call us at Hepatitis SA for a referral on (08) 8362 8443.
Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities. (08) 8351 9031
Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia has now been taken over by Hepatitis SA: see the Hepatitis SA listing above.
SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
Aboriginal Health Council SA Peak body representing Aboriginal communitycontrolled health services and substance misuse services in SA. AHCSA is the ‘health voice ’ for all Aboriginal people in SA, advocating for the community and supporting workers with appropriate Aboriginal health programs. (08) 8273 7200
Are you interested in volunteering with Hepatitis SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepatitissa.asn.au and let us know. We rely on volunteers for many of our vital services.