C
Hepatitis
C Health Inspiration
Community News #53 • September 2011
HCCSA is planning its second series of six-week workshops for people living with hepatitis C, starting October 2011. The workshop program will provide participants with practical skills for living well with hepatitis C, as well as building networks. The course is FREE, FUN and INTERACTIVE, and most of all it is conducted in a friendly, safe and confidential space.
To register your interest, please contact Mahdi on 8362 8443 or Mahdi@hepccouncilsa.asn.au
HEPATITIS C IN PRISON Image CC www.flickr.com/photos/0olong/1235097536
WIN!
Remember that from now on, the best letter printed in each issue of the Hepat itis C Community News will receive a $25 shopping voucher.
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Fax: Web: Email:
Write to us about anything to do with the magazine, the Council, living with hepatitis C, or living well ideas.
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au
Email the editor at james@hepccouncilsa.asn.au
STAFF 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: Mahdi Nor Nicole Taylor Michelle Spudic (Rural)
About the Cover
Peer Education Coordinator: Maggie McCabe
Adapted from “Il cavalletto” by Giovanni Battista Piranesi (1720–1778), from the series The Imaginary Prisons (Le Carceri d’Invenzione)
Peer Educator Mentor: Fred Robertson Peer Educators: Anya Karan Philip Penny
Mark Will
Megan
Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Dayna Gauri Mark Phil Philip Yvonne Publications Officer: James Morrison Info and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos Vice Chairperson: Kristy Schirmer Secretary: Stefan Parsons Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Bill Gaston Shabeena Laundy
Catherine Ferguson Carol Holly Justine Price
Contents 1
PBS Delays Update
2
Awareness Week 2011 Photos
3
The CHI Study
4
Little Book Launch
6
David’s Story
9
Young People, Risk & Hep C
11
Hep C in SA Prisons
12
Peer Support in Prisons
14
Prison Consensus Statement
Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. 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 Council members and the general public. I’m promoting my underpants to overpants.
Useful Contacts & Community Links Hepatitis C Council of SA
Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. For support and information about hep C, or for referrals, call the Council’s Telephone Info and Support Service for information on 1300 437 222 (for the cost of a local call anywhere in Australia).
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
Clean Needle Programs
To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340
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
Hepatitis Helpline
This hotline operated by Drug and Alcohol Services South Australia provides 24hour information, referral and support. Freecall: 1800 621 780
SA Sex Industry Network (SA-SIN)
Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
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 the Hepatitis C Council 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
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 the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services.
PBS Delays Update Senate inquiry recommends governmental backdown [Editor’s Note: A Senate Inquiry report was tabled on 17 August, after an investigation into the Gillard government’s proposed changes to the working of the Pharmaceutical Benefits System. As seen in the last issue of the Hepatitis C Community News, these changes would significantly delay new treatments for hepatitis C.] What is potentially at stake here is the approval of boceprevir and telaprevir under the S100 Highly Specialised drugs scheme as government-funded therapies—and thus radical improvement in the quality of lives of thousands of Australians with hepatitis C genotype 1. The 6 recommendations of the Senate Committee say it all: Recommendation 1: The committee recommends that the Government
withdraw the statement made on 25 February 2011 regarding the deferral of the listing of new medicines and the new rules applying to listings from that point forward.
new medicines on the PBS within the terms and intent of the Memorandum of Understanding signed with Medicines Australia on 6 May 2010 and re-signed on 28 September 2010.
Recommendation 2: The committee recommends that the Government retract the statement that PBAC listing recommendations will not be proceeded with until savings are found to offset the costs of listing those medicines under the PBS.
Recommendation 5: That the Government reinstate the ‘$10 million rule’ so that medicines that have a financial impact of less than $10 million in each year over the forward estimates can be listed on the PBS Schedule by the minister without waiting for Cabinet approval.
Recommendation 3: The committee recommends that the Government should explicitly state that it rejects any implication that the listing of new medicines requires savings to be made elsewhere in the health portfolio. Recommendation 4: The Government should restate its commitment to making an explicit decision regarding the listing of
I commend the work of this Inquiry, and the submission and evidence from Hepatitis Australia – accessed via the link below, and pass on this note from Helen Tyrrell, our CEO of Hepatitis Australia in Canberra. Stuart Loveday President Hepatitis Australia
Spread the Word! Are you a prisoner? Have you spent time in prison? We would love to hear your experiences of dealing with hepatitis C and treatment in prison. Contact the Hepatitis C Council at michelle@hepccouncilsa.asn.au, ring 1300 437 222, or talk to a peer educator on one of their prison visits. Hepatitis C Community News September 2011 •
Awareness Week 2011
Oliver spreading the word in Rundle Mall and Arndale Shopping Centre during this year’s Hepatitis Awareness Week Hepatitis C Community News • September 2011
The CHI Study: Easy and Anonymous Initial findings—and your help needed! You have probably seen the ad for the CHI study in previous editions of the Hepatitis C Community News, or one of our posters or business cards. It’s a large national online study that investigates the lives of people who are living with hepatitis C. People are signing up from all over Australia. So far, the sample consists of a wide range of people from different circumstances, including people recently diagnosed, right through to those who have been living with the virus for decades. We are also hearing from people who are about to go on treatment, those in the middle of treatment, and some who are not considering treatment at all any time soon, and also people who have successfully cleared the virus. The wide array of people so far is excellent, but we
still need your help. Ideally, we want a large and diverse range of people to be involved in the study. This will give us an excellent understanding of living with hep C. It will also allow us to regularly update you, the readers, about results.
Discrimination and hepatitis C Initial findings from the CHI Study have confirmed that discrimination remains a significant challenge for people living with hepatitis C. Over 50% of people who completed the CHI Study reported they had experienced negative reactions or less favourable treatment as a result of other people knowing about their hepatitis C status. Most
commonly, this negative treatment was in the form of being offered a different level of care (60%), friends or associates acting differently (43%), or negative reactions from a family member (25%). However, the story is not all bad news; many reported experiencing positive reactions resulting from people knowing about their hepatitis infection. Some of the most commonly reported positive reactions included a larger support network through contact with hepatitis services (53%), increased closeness with family and friends (45%), and a greater understanding in relationships with friends (43%). These findings suggest that discrimination is one of the major challenges faced by people living with hepatitis C, thus reinforcing the need for guaranteed anonymity and the right to privacy. At the same time, it brings to light the issue of disclosure, and the decisions associated with this aspect of living with hepatitis C. To join the study, or just to find out more, go to www. chistudy.org.au. Andrew Larner Australian Research Centre for Sex, Health and Society La Trobe University
Hepatitis C Community News September 2011 •
Hepatitis C Community News • September 2011
Launch of the Little Book of Hep C Facts The incidence of hepatitis C in Aboriginal communities is frighteningly high—much higher than in the broader State population. When planning for this year’s Hepatitis Awareness Week (25–29 July), the Hepatitis C Council of SA wanted to do something to help fight this. It was decided that a small but comprehensive book, full of information about the hepatitis C virus, its prevention, transmission and treatment, would be the ideal project. But to succeed, the book would need to be attractive in appearance and straightforward in its language, so that it could be used in Aboriginal communities all over the state, from Adelaide to the remote missions. The Hepatitis C Council worked in partnership with various individuals and groups from a number of different Aboriginal communities, spending eight months creating and preparing the resource. This process was enabled by a $10,000 grant from Hepatitis Australia, the national peak organisation for all state and territory hepatitis organisations, and the promoters of Hepatitis Awareness Week. Cecilia Lim, coordinator of the Council’s Information
and Resources program, worked closely with the Grannies Group at the Parks Community Centre and the Sophia Aunties group, getting the wording just right. Artists Justin Greenhaigh and Stanley Geebung also made invaluable contributions to the text. Meanwhile, Maggie McCabe, artist and head of the Council’s Peer Support program, worked with the Brodie sisters—Bonnie, Colleen and Margaret—as well as other Tauondi artists, creating beautiful images and designs to accompany the text. This was hugely important in creating a book that people would want to pick up and look through— something to use and keep, rather than a dry-as-dust throwaway pamphlet. Despite hepatitis C being a serious issue, there were a lot of laughs along the way as everyone involved in the project shared their experiences and learned from one another. And the Little Book of Hep C Facts was finally ready for Awareness Week, as the centrepiece of the week’s launch. Darrien Bromley of AHCSA, and also a member of the Hepatitis C Council’s board, co-launched the publication along with Isabelle Norvill
of the Parks Grannies Group. “I encourage all here today to share the 38 facts about hepatitis C contained in this little book with their families and communities so that there is much greater awareness of this virus, how to prevent it, manage it and treat it.” He said. “With this greater knowledge and understanding we can encourage those who fear they may have it to ask their GP for a blood test, and for those who already know they are living with hepatitis C to seek assistance and support.” “I would like to thank all involved in putting this resource together for a job well done, and I would encourage anyone with any further questions about hep C, or who just want to talk to someone who understands the issues, to ring the Council helpline.” The Hepatitis C Info & Support Line can be contacted on 1300 437 222 (or 1300 HEP ABC) from 9am to 5pm weekdays. All calls are confidential. More information about hepatitis, the Council and the Little Book of Hep C Facts can be found online at www. hepccouncilsa.asn.au. James Morrison
Hepatitis C Community News September 2011 •
PRISONS & HCV
David’s Story A brother and sister on their fight to get him treatment in prison My name is David, and I am one of the success stories of Interferon treatment. First of all I think I should tell you the circumstances of how I was infected. It was in the late ‘80s, and noone had ever heard of hep C. It was all about AIDS.
The thinking amongst the majority of intravenous drug users was that only gays got AIDS, and the question around the spoon or a shared needle was, “Are you gay? No? Great! Then I’m safe!” Oh, the luxury of hindsight!
In the needle exchange clinics in Sydney, free blood tests were offered, so I took one for peace of mind—but mainly because it was free. I went in for fresh needles several weeks later and was sat down with several people on the staff and told I had non-A non-B hepatitis. They didn’t have a name for it then. I was told it was hep C in 1991, and like a lot of people at that time, I thought it was a death sentence. I returned to Adelaide only to confront the worst period of my hep C in my 18 years of infection. Through no real fault of their own, my own family and mates made me feel like a leper. “Did you use that cup/ plate/spoon?”; “Did you use that towel?”; and so on and so forth. Unfortunately, they all took their information from ‘prestigious’ current affairs shows and magazines. So, as you can imagine, mosquitoes, sneezing and coughing were all “death”. I’m sure they wiped down the seats with Dettol when I left. All of this can be attributed to the level of misinformation that to some extent still exists to this day, though I’m heartened to see that education is playing a good role in breaking down prejudice and negative attitudes. It doesn’t help when you get troglodytes like Dr Oz on TV telling people only two months ago—to an audience of God-knows how many million people—that “There is
Hepatitis C Community News • September 2011
PRISONS & HCV
no cure for hep C!”. How do you compete with that? Only with more education.
came back: virus un-detected. As you can imagine, I was thrilled with the news.
of the treatment and another condition he had called Porphyria cutanea tarda.
It was almost 18 years after I was infected with the virus that I heard of Interferon, and that was because I was in prison. As most of you would be aware, genotype 1 is harder to beat than genotypes 2 or 3. In prison they make sure you take your medication in strict accordance with the Interferon protocol, and the limited access to drugs and alcohol gave our livers a good chance of recovery.
While I had to complete the full 12 months of treatment, my depression grew worse. I was offered and even encouraged to take antidepressants. As I figured it wasn’t “me” that was the cause of my depression but the medication, I did the normal “man thing” and toughed it out. That in hindsight was pigheaded and foolish.
David explained his frustration to me at having to explain his condition to the visiting nurse. He said that while they were “nice enough”, he found them to be lacking in the expertise needed to help him.
As to the side effects, well, I can personally attest that I unfortunately had all of them. As well as the nausea, lack of appetite, bad sleeping (extreme lethargy), depression, etc, I had developed a bad reaction to Ribavirin. The rash I developed from my feet, all over the backs of my legs and my back was distressing, to say the least. It was like rolling in fine sand with bad sunburn. The itching was so bad I would wake up with blood on my sheets from scratching. My Ribavirin dose was reduced from 1200mg per day to 1000mg. My rash eased somewhat, but the itching was still severe. They tried several creams and settled on Betnovate cream rubbed on my back and legs three times per day, and I avoided hot showers. My first bloods after approximately 3 months
At the end of my treatment I had beaten hep C, and all subsequent testing has shown no return of the virus. I no longer use IV drugs, but I still battle with alcoholism and addiction—that would be another long story, not relevant here. Thank you for reading, and I hope this may have been of some use for those of you considering starting treatment. David
David’s sister, Linda, takes up the story: In 2009 David would phone me from the prison. Increasingly I noticed what can only be described as despair in his voice in those conversations. He was very obviously depressed. It was a combination of the Ribavirin, being incarcerated, and dealing with the side effects
One of the issues was that, due to his immune system being really compromised from the treatment for his hep C, it aggravated the underlying genetic condition (Porphyria cutanea tarda). This was made worse by exposure to sunlight. It would cause his hands, back and legs and feet to become covered in large painful blisters. I asked David to ask the prison authorities to allocate him work that was inside to avoid the sunlight. He said he had tried this approach but it seemed no-one was listening to him. David was advised that this genetic disease was probably activated by a compromised immune system (hep C) and stress. It should be a relatively easily treated condition that involves the sufferer having blood taken. This is called therapeutic phlebotomy, and it’s like what happens when someone donates blood. David kept telling the relevant authorities within (continued over page) Hepatitis C Community News September 2011 •
PRISONS & HCV (from previous page)
the prison of his condition and how he needed the therapeutic phlebotomy. I was staggered to see they did nothing! I will admit that after some phone calls with David, I feared he would commit suicide or, at the very least, that his depression and the physical side effects of this Porphyria cutanea tarda was almost driving him mad. I told David that I intended doing something about this. Initially he pleaded with me not to, for fear this would mean reprisals from prison staff towards him if I stirred the pot. I refused to let my brother’s condition be stigmatized, and as he was in prison it was hard for him to advocate on his own behalf. I asked him to trust me and allow me to be his voice. In 2009 I wrote to the Minister for Correctional Services demanding that my brother be given access to treatment related to his condition. I told them that David was covered in large painful blisters and worked outside in the prison. Exposure to sunlight made this extremely painful for him. I asked the Minister to ensure that David received immediate access to therapeutic phlebotomy and to ensure his working conditions meant he would not work out in the sunlight. After a non-committal response from the Minister I contacted his office Hepatitis C Community News • September 2011
and said that they left me with no other course of action than to take my concerns elsewhere in order to get David access to the treatment he needed. Shortly after this occurred, I received a letter to advise that my brother’s situation would be given attention. David received the treatment of therapeutic phlebotomy and had his working conditions changed to ensure he was not required to work outdoors within the prison system—something he had a right to access, and something that he was entitled to. When advocating for him I argued that the Department of Correctional Services were failing in their duty of care, and that they were in fact discriminating against him by not providing adequate access to the medical treatment he deserved. Due to my background in working in both Commonwealth and State government, I was able to cite relevant legislation to further support my argument. I said that if someone was incarcerated with asthma, a heart condition or diabetes they would receive their medication and their medical condition would be given the due care it deserved with regard to what the person was required to do physically within the prison system.
I have always been the type of woman who will challenge bureaucracy when I feel that there is discrimination and people are denied a right to have access to information and medical treatment. I have chosen not to name the relevant Minister for fear that I may be seen to be politically motivated. Suffice to say it would not matter which party was in power—I would have gone ahead with just as much determination to ensure my brother had the access to the treatment he was entitled to. I have never backed away from a challenge with people in positions of power or government. When I am passionate about something or I know that I have the relevant legislation on my side, I am never afraid to stand up and say so. David was pleased with the outcome, although I was disappointed that I needed to revert to threats to approach the media just to ensure he had access to the treatment he was entitled to receive. David wanted me to make it known, though, that while he was disappointed in the treatment of that condition, he cannot speak highly enough of the access to the Interferon treatment while he was in prison. Without that he is not sure he would have completed the treatment. Linda Feetham
Young People, Risk and Hepatitis C The World Hepatitis Day Twilight Education Session Young people may be at risk of hepatitis C due to a lack of understanding about the routes of transmission, risk-taking behaviours and the possible consequences of their actions. The HIV, Viral Hepatitis & Sexually Transmitted Infections in Australia Annual Surveillance Report shows that: • in 2008, 23% of new hepatitis C infections in SA were in people aged 10-29 years old, and • in 2009, hepatitis C transmission rates were highest in the 20-29 age group. Furthermore, the National Hepatitis C Resource Manual (second edition, 2008) reports that Aboriginal and Torres Strait Islander people who engage in risky behaviours are also a priority group, and overall have a higher proportion of young people than the wider population. On this year’s World Hepatitis Day, 28 July 28, a twilight information session for teachers and youth workers was held by the Hepatitis C Council of SA and the Drug and Alcohol Service SA, aimed at exploring the relationship between young people, risk and hepatitis C education and prevention.
Hepatitis C transmission: why are young people at risk? Hepatitis C is transmitted via blood-to-bloodstream contact. This means blood containing the virus must exit the body of one person, and enter the bloodstream of another. Any equipment shared between two or more people which pierces the skin has the potential to transmit hepatitis C, including: • injecting drug equipment; • tattooing, piercing and other body modifications; and • other activities which break the skin, such as sharing personal items like razors and toothbrushes, and fighting. It is very rare that hepatitis C is transmitted through sexual activity unless there is blood-toblood contact, as hepatitis C cannot be passed on through semen or vaginal fluid.
Young people and injecting drug use Up to 83% of hepatitis C transmissions in Australia are through sharing injecting drug equipment. All equipment used in the injecting process has the
potential to transmit hepatitis C, including needles, syringes, spoons, filters, tourniquets, alcohol swabs, and surfaces like tabletops. The 2007 National Drug Strategy Household Survey reports that only 1.8% of the population have engaged in injecting drug use, with those most likely to be in the 20-29 and 30-39 age groups. The average age of first injecting is 18 years. Furthermore, young people who are homeless, or at risk to become homeless, have shown a strong correlation with injecting drug use practices.
There are a many injecting practice risk factors which indicate young people may be at risk of hepatitis C transmission; in particular, young people are more likely to report sharing of needles and other equipment. Other issues include a lack (continued over page) Hepatitis C Community News September 2011 •
(from previous page)
of information on safer injecting practices, lack of awareness of blood-borne virus prevention, greater dependence on others to obtain the drug and equipment, and possible social isolation (particularly for members of culturally and linguistically diverse communities). For young people who are at either at risk of, or are currently, injecting, education about safer injecting practices and the services available for them is vital for harm minimisation and reducing the risk of hepatitis C transmission.
Young people and tattooing, body-piercing and body modification As with injecting drug use, all equipment used in the skin-penetration process during tattooing, piercing and other body modification has the potential to transmit the hepatitis C virus—such as shared inkpots when tattooing, even if a new needle is used each time. ‘Backyard’ tattooing and piercing (i.e. that occurring at home, rather than in a professional setting) or other body modification presents a high level of risk for hepatitis C transmission. This is often due to a lack of knowledge of correct tattooing or piercing processes and of blood-borne viruses, sharing Hepatitis C Community News 10 • September 2011
of equipment, and not using adequate sterilisation processes. Indeed, while tattooing equipment may be purchased relatively cheaply online in Australia, the machine required to sterilise and clean the equipment properly—an autoclave—is very expensive. Strict guidelines and Occupational Health and Safety regulations in tattooing or piercing studios means transmission of hepatitis C in these settings is very unlikely in Australia. Guidelines about single use of skinpiercing equipment, wearing gloves, thorough sterilisation procedures (including the use of an autoclave) and blood-borne virus training all greatly reduce the risk of hepatitis C transmission.
Engaging young people about hepatitis C Due to the sensitive issues discussed in relation to hepatitis C, particularly drug use, it can be difficult to engage young people around this topic. It is important to ensure hepatitis C education is relevant and ageappropriate. Although harm minimisation information on safer injecting practices may be appropriate for some young people, there are many others for whom it will not be suitable. A key strategy Hepatitis C Council educators utilise
to engage young people is exploring healthy body art. This is an area of interest for many young people, and education may begin with a discussion about whether young people currently have or plan to get any tattoos, what tattoos they might want, and so on. This provides opportunity for education on health issues associated with tattooing and piercing, including transmission of blood-borne viruses, and safe practices, such as visiting experienced tattooists who have been properly trained, and the importance of using the correct equipment.
How can the Hepatitis C Council of SA support you? The Hepatitis C Council educators and peer educators are available to provide a tailored information session for any student, client or workforce groups who would benefit from hepatitis C education. Educators utilise a range of resources, including DVDs, artwork, quizzes and games to ensure sessions are engaging and interactive. The session and all resources provided are completely free. For more information about education, please contact mahdi@hepccouncilsa.asn. au, or call the Hepatitis C Council on 8362 8443. Nicole Taylor Educator
PRISONS & HCV Educators’ prison visits during Hepatitis Awareness Week 2011 People in prison are an important population group for the Hepatitis C Council to work with, because of the high prevalence of the virus present in prisoners. Some of the statistics are: • In SA, over 10% of hep C notifications were received from prisons • Hepatitis C prevalence for prisoners upon first admission is just over 40% • About 40% of male prisoners are hep C-positive • About 60% of female prisoners are hep C-positive • Overall, Aboriginal and Torres Strait Islander prisoners have an even higher prevalence of hepatitis C compared with the general prison population An important way to help reduce transmission and improve the health of prisoners is through education. Our educators and peers provide hepatitis C education to prisoners all across the state. And Hepatitis Awareness Week is always a busy time at the Hepatitis C Council of SA, with all workers busy providing education, information and services about hepatitis.
Staff from all the prisons were excited and enthusiastic about hosting education sessions along with “healthy liver lunches” for Hepatitis Awareness Week. Overall, we had four education sessions with prisoners and a couple with staff. For the prisoners we had an interactive fun session to which everyone contributed.
Remand Centre. He provided his personal story about living with the virus, and what hepatitis C treatment was like for him. The positive speaker program, ‘C Talk’, is extremely valuable as it gives participants an opportunity to hear from someone affected by hepatitis C and explore issues such as stigma and discrimination.
Participants from all of the sessions enjoyed the experience. It gave them an opportunity to talk about hepatitis in a safe and confidential space with our educators. Having sessions that create open discussions are particularly important for people to get their questions answered and to be able to discuss the level of risk for blood-borne transmission associated with different behaviours.
I would like to thank all the staff involved in setting up the health liver lunches and sessions at each site. You each did a wonderful job and it was great to see the variety of yummy healthy food available. Also, I would like to send my appreciation and thanks to all the prisoners involved in these sessions, as all of you were engaged, involved and shared your knowledge and experiences. Thank you!
One of our positive speakers came to the session at the
Michelle Spudic Rural Educator
Photo CC Taylor Riché www.flickr.com/photos/djwhitebread/4172985353
Hepatitis in SA Prisons
Our education team received a number of requests for information sessions with SA’s prison population. Prisons that educator Mahdi Nor or I visited as part of Awareness Week were • Cadell Training Centre • Port Augusta • Adelaide Remand Centre
A healthy liver lunch makes a nice change from normal prison food. Hepatitis C Community News September 2011 • 11
PRISONS & HCV
Peer Support for Prisoners Visits, training and opportunities Photo CC Publik16 www.flickr.com/photos/publik16/2926688609/
During June and July this year, the Hepatitis C Council of SA’s rural educator, Michelle Spudic, and an outreach hepatitis C peer educator, Fred Robertson, gave peer education training to eight male prisoners at the Port Lincoln Prison as part of the Department of Correctional Services Prison Peer Support training program. This was the third Prison Peer Support program to have been successfully completed since 2009, and the second this year after a course run at Port Augusta Prison. All programs have involved outreach by hepatitis C peer educators to support and educate prisoners so that they can, in turn, offer that Hepatitis C Community News 12 • September 2011
same support and education to other prisoners living with hepatitis C. This is extremely important, since roughly 40% of the male prison population in Australia has hepatitis C. This training was conducted in partnership with Relationships Australia in order to provide prison peer support graduates with a Certificate of Attainment in Community Services III. The overall hepatitis C training component attached to this certificate course was 15 hours delivered over two and a half days. Initially there were 11 participants in the course. However, one of the peers decided not to continue. The ten prison peer support workers are expected to
graduate this year at a ceremony organised by the Port Lincoln Prison, where they will receive their Certificates of Attainment. We expect to continue our relationship with the Port Lincoln Prison by having a HCCSA Outreach Peer Educator attend the Port Lincoln Prison every six months. There we will assist the Prison Peer Support workers with their hepatitis C knowledge and skills in engaging with peers, maintaining confidentiality to do with hepatitis C, and general support with being a peer educator. The feedback from participants was very positive:
PRISONS & HCV
“Very easy format to understand, with helpful teachers.” “The sessions are full of good tips on how to avoid hep A,B and C.” “I gained a lot more information on low risk, potential risks and high risks.” “There’s so much to learn about hep C that I did not know before!” “I know more now than I did before I started this course.” The peer support workers were able to identify with the need to provide peer support to inmates on treatment and saw the peer support as a powerful means of prevention in a high-risk environment. All the participants were engaged due to the relevance of hepatitis C and how it affects their lived experiences. One person expressed his desire to be able to greet all new prisoners coming into the system in order to help them with the transition process and to give them hepatitis C information and support. Of the ten participants who completed the training, one identified as being hepatitisC-positive, another two had cleared through treatment, and all ten identified as being at risk of hepatitis C infection. “Right from the very first day’s training with this group I remember being very impressed about how seriously the prisoners take
In last issue’s article ‘The Treatment Journey’, we neglected to mention talking to one of the Hepatitis Community Nurses as an option, for which we apologise. These nurses can visit your clinic to provide care and assistance as required. Some of the services available are: • education and counselling for patients diagnosed with hepatitis C • assistance for GPs and tertiary treatment centres to complete patient work-ups prior to referral or treatment • streamlining referrals and supporting patients when attending tertiary treatment centres • coordinating care and communication between various health-care providers • monitoring and follow-up for patients on treatment • education and management of basic treatment side-effects • follow-up of patients who have completed treatment • education and support for practice nurses If there are other relevant services with which the nurses could assist, they are keen to help. For referral to a HCV nurse, contact them by email or phone: • Margery Milner, 0423782415, margery.milner@health.sa.gov.au • Joanne Morgan, 0401717971, joanne.morgan@health.sa.gov.au • Jeff Stewart, 0401717953, jeffrey.stewart@health.sa.gov.au their role as peer educators, with their ready grasp of issues around confidentiality and their acknowledgement of how serious this responsibility can be,” Fred explained. “This is very worthwhile and rewarding peer education work because if there is an area where hepatitis C is a relevant topic, it is in the prison setting. The statistics of the amount of prisoners living
with the virus show this. “Many prisoners have said to me that they are glad to have the opportunity to do the treatment while in prison, because there are too many issues to distract you on the outside. For example, until recently Cadell prison had a 100% success rate of people clearing the virus—only one prisoner recently was a nonresponder, and had to be taken off treatment.” Hepatitis C Community News September 2011 • 13
Hep C Positive Speaker Training Do you have HEP C, or have you recently cleared the virus?
The Hepatitis C Council of SA is conducting FREE TRAINING for people interested in being Positive Speakers, working with the Council’s Education Team. The next round of training will commence in November 2011. Positive Speakers will be used as part of the education sessions the council runs, and has been proven to be effective in enhancing the learning of participants, promoting awareness and providing an involving live experience for the community. Positive speakers will be paid an honorarium for their time.
To register your interest, please contact Mahdi on 8362 8443 or mahdi@hepccouncilsa.asn.au.
Prison Consensus Statement Addressing hepatitis C in Australian custodial settings The Third National Hepatitis C Strategy in 2010, which was endorsed by all Australian Health Ministers, listed people in custodial settings as a priority population. This strategy recommends the monitoring of the implementation of the Hepatitis C Prevention, Treatment and Care: Guidelines for Australian Custodial Settings as a priority action. Despite agreement on this action, little progress has been made on the Hepatitis C Community News 14 • September 2011
ground; there is therefore urgent need for a greatly improved response so that all Australians, including those in a custodial setting, have access to the same level of prevention and care. “Hepatitis C is rife in Australian prisons yet far too little is being done” said CEO of Hepatitis Australia, Helen Tyrrell. “In 2008, the Ministerial Advisory Committee on AIDS, Sexual Health and Hepatitis released a plan to manage the issue. Since then, basically
nothing has happened. No progress report has been released and Health and Corrective services ministers in all jurisdictions are just not driving the implementation of the plan as they should. It’s all too hard, and as a result we have a major and growing public health issue. Prisoners have rights, and they deserve to receive health care services equivalent to those provided to the rest of the community”. In July, Hepatitis Australia sent the following letter to all of Australia’s health ministers:
Photo CC Hazzat www.flickr.com/photos/hazzat/5412540184
K A E SP UUPP!!
PRISONS & HCV
“Hepatitis Australia’s Mission is to ensure effective action on hepatitis B and hepatitis C to meet the needs of all Australians. In keeping with this mission, we have developed the attached Consensus Statement: Addressing Hepatitis C in Australian Custodial Settings, which has been endorsed by over 20 leading organisations in this field. “All Australian Health Ministers endorsed the Third National Hepatitis C Strategy in 2010 which listed people in custodial settings as a priority population. The Strategy lists monitoring the implementation of the Hepatitis C Prevention, Treatment and Care: Guidelines for Australian Custodial Settings as a priority action. Despite agreement on this action, little progress has been made on the ground: there is therefore an urgent need for a greatly improved response. “On behalf of Hepatitis Australia and all the endorsing organisations, I encourage you to consider the attached Consensus Statement and paper, and invite your response to it. We hope that it will assist you in working at a whole-ofgovernment level to develop much stronger programmatic responses to hepatitis C in custodial settings across Australia.” Tom Koutsantonis MP, SA’s Minister for Correctional Services, replied as follows:
“I can advise that In South Australia the Department for Correctional Services personnel work very closely with the South Australian Prison Health Service and the Hepatitis C Council SA to action objectives within the South Australian Hepatitis C Action Plan 2009-2012. “As you are likely aware, the Action Plan derives its goals from national strategies and frameworks. The Department also consults with various other agencies, including Drug and Alcohol Services SA and the Communicable Disease Control Branch, to ensure successful actioning of strategies listed in the Plan, as measured against performance indicators. “One of the major strategies identified and implemented by the Department within the current Action Plan is the establishment of the Prisoner Peer Support Program which provides accredited training in a variety of areas, including health promotion. Training is provided by the Hepatitis C Council of SA, which is committed to regularly visiting prisons for information session updates for both prisoners and staff. “This program has been successfully completed at the Adelaide Women’s Prison, Port Augusta Prison and Port Lincoln Prison, with trainers providing follow-up courses every six months. “Trainers will be returning to Port Augusta Prison in the near future to commence
an Aboriginal Peer Support group, with the assistance of the Aboriginal Services Unit and Aboriginal Staff within the prison. Furthermore, as part of the initial health assessment when prisoners are admitted to custody, there is the opportunity to be tested for Hepatitis C. Those found to be positive are provided with relevant counselling and treatments. “Prisoners are informed of the risks of hepatitis C within the prison environment and are provided with information pamphlets Posters and information pamphlets are available in common areas throughout the prisons and hepatitis C nurses visit institutions on a regular basis. “The South Australian Prison Health Service ensures (where possible) that release planning includes linking Hepatitis C positive prisoners with community treatment programs to ensure continuity of health care, which is also consistent with strategies outlined within the current Action Plan [...] The Department is committed to continuing to work with local and national stakeholders to facilitate a consistent and national response to Hepatitis C management within the custodial environment.” The Consensus Statement can be read at http://tinyurl. com/prisonconsensus. You can contact the Minister to express your views at minister.koutsantonis@agd. sa.gov.au or on 8463 6560. Hepatitis C Community News September 2011 • 15
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The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. A strong membership of people affected by the virus is essential to our work. Complete the form below and send it to us by post: PO Box 782, Kent Town SA 5071 or fax: (08) 8362 8559.
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Hepatitis
Are you happy Cwith your GP? News Community • June 2011 #52
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Community News #51 • April 2011
We are updating our Hep C-friendly GP list for metro and rural areas. TREATMENT OPTIONS nt Journey • The Treatme
New Medications Delayed
Please call Deborah on 1300 437 222. 7/06/2011 9:45:04 AM
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Hepatitis C Community News 16 • September 2011
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Remember that from now on, the best letter printed in each issue of the Hepat itis C Community News will receive a $25 shopping voucher.
The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Fax: Web: Email:
Write to us about anything to do with the magazine, the Council, living with hepatitis C, or living well ideas.
3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au
Email the editor at james@hepccouncilsa.asn.au
STAFF 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: Mahdi Nor Nicole Taylor Michelle Spudic (Rural)
About the Cover
Peer Education Coordinator: Maggie McCabe
Adapted from “Il cavalletto” by Giovanni Battista Piranesi (1720–1778), from the series The Imaginary Prisons (Le Carceri d’Invenzione)
Peer Educator Mentor: Fred Robertson Peer Educators: Anya Karan Philip Penny
Mark Will
Megan
Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Dayna Gauri Mark Phil Philip Yvonne Publications Officer: James Morrison Info and Resources Officer: Rose Magdalene ICT Support Officer: Bryan Soh-Lim Librarian: Joy Sims BOARD Chairperson: Arieta Papadelos Vice Chairperson: Kristy Schirmer Secretary: Stefan Parsons Treasurer: Darrien Bromley Senior Staff Representative: Kerry Paterson Ordinary Members: Lisa Carter Bill Gaston Shabeena Laundy
Catherine Ferguson Carol Holly Justine Price
Contents 1
PBS Delays Update
2
Awareness Week 2011 Photos
3
The CHI Study
4
Little Book Launch
6
David’s Story
9
Young People, Risk & Hep C
11
Hep C in SA Prisons
12
Peer Support in Prisons
14
Prison Consensus Statement
Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. 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 Council members and the general public. I’m promoting my underpants to overpants.
Useful Contacts & Community Links Hepatitis C Council of SA
Provides information, education, support to people affected by hepatitis C, and workers in the sector. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council. For support and information about hep C, or for referrals, call the Council’s Telephone Info and Support Service for information on 1300 437 222 (for the cost of a local call anywhere in Australia).
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
Clean Needle Programs
To find out about programs operating in SA, contact the Alcohol and Drug Information Service. 1300 131 340
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
Hepatitis Helpline
This hotline operated by Drug and Alcohol Services South Australia provides 24hour information, referral and support. Freecall: 1800 621 780
SA Sex Industry Network (SA-SIN)
Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666
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 the Hepatitis C Council 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
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 the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services.
C
Hepatitis
C Health Inspiration
Community News #53 • September 2011
HCCSA is planning its second series of six-week workshops for people living with hepatitis C, starting October 2011. The workshop program will provide participants with practical skills for living well with hepatitis C, as well as building networks. The course is FREE, FUN and INTERACTIVE, and most of all it is conducted in a friendly, safe and confidential space.
To register your interest, please contact Mahdi on 8362 8443 or Mahdi@hepccouncilsa.asn.au
HEPATITIS C IN PRISON Image CC www.flickr.com/photos/0olong/1235097536