C
Hepatitis
Community News #43 • March 2009
APOLOGY
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:
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
STAFF Executive Officer: Kerry Paterson Administration Coordinator: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Lyn Will Judy Anne Debra Michele
Linda McInnes, the author of the article ‘Conference Time’ in the last issue, was not pleased by the way in which her article was edited to fit the magazine. Please see the original text at www.medhelp.org/user_journals/show/41600 for the unedited version.
Introduction It’s all about making a noise this time. Jump right in to see what we’re on about.
Next issue’s copy deadline is 25 June, and the magazine will be published in July. See you then.
About the Cover On the front, highlights from HCCSA’s contribution to the 2009 Adelaide Fringe Parade on Friday, 27 February. On the back, our new comic strip continues with part three. Script and art by James Morrison. Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email james@hepccouncilsa.asn.au.
Coordinator of Education Programs: John McKiernan Educator: Maggie McCabe Information and Resources Coordinator: Cecilia Lim Info and Resources Volunteers: Adil Bryan Fred Judy Lyn Phil Philip Stephen Yvonne
Contents 1
Start a Noisy Network
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Fringe Spectaculars
Publications Officer: James Morrison
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Making a Noise: The Theory
Librarian: Joy Sims
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Web Cures
BOARD
& Crowd-Maddening Astroturf
Chairperson: Arieta Papadelos
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Becoming Free
Vice Chairperson: Catherine Ferguson
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Political Speech
Secretary: Peter Underwood
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Connecting with Politicians
Treasurer: Darrien Bromley
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Police, Privacy & Blood
Senior Staff Representative: Kerry Paterson
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Peer Education
Ordinary Members: Lisa Carter Bill Gaston Carol Holly Stefan Parsons Justine Price Kristy Schirmer
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Brain Fog Explained
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. Warm up? We may as well sit round this cigarette. This is ridiculous. We’ll be found dead in here next spring ... This place has become impossible. Nothing to eat, freezing cold and now a madman on the prowl outside with eels.
Start a Noisy Network with the Hepatitis C Council of South Australia
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t the Hepatitis C Council of SA, we believe there has never been a better time to make a noise about hepatitis C. 20 years have gone by since the hepatitis C virus was first discovered in 1989. The epidemic has not been contained, and the hepatitis C burden of disease is ever-expanding. How can we convince our state’s decisionmakers that hepatitis C is a serious public health issue which requires action now? This year, HCCSA looks forward to the release of the long-awaited SA Hepatitis C Action Plan, due before the end of June. This plan is a very important milestone for all South Australians affected by hepatitis C, as it is the first time our state will have its own strategic response to hepatitis C. If implemented fully, the plan will provide increased coordination and provision of services for people living with the virus, as well as those at risk. There is no doubt the Action Plan has been a long time in the making, and many people in the hepatitis C sector have worked hard to develop it, but arguably the most difficult part of the process is
yet to come: implementation! HCCSA believes one resource hepatitis C has that could make a difference is its numbers—an estimated 17,000 South Australians have been exposed to hepatitis C. As any of you who have been diagnosed know, hepatitis C does not just affect you, but also your partners, families and friends. So many people are affected, yet our community—including our politicians—hears very little and has very little understanding about this virus and its human costs. So how do you go about making a noise? We believe there are three essential steps: • connect with others, • challenge ignorance and fear (the raw ingredients of discrimination and denial), and • celebrate strengths and successes. Throughout this edition of the Hepatitis C Community News, there are articles on how we are going about making a noise, and we invite you to join us. At the Council we know the personal story is a powerful way to make a noise. Our new CCHAT program of hepatitis C peer educators are connecting to others to educate them about hepatitis C and to share their experiences of managing hepatitis C in their lives.
On the front cover you can see how HCCSA staff, volunteers, our partner organisations, families and friends had a lot of fun making a spectacular noise celebrating our strengths and successes
At the Council we understand only too well the fears involved for individuals in talking to others about hepatitis C. You may not yet be ready to talk to your local MP, but are you ready to challenge your fears and consider if there is a family member or a friend that you would like to talk to about hepatitis C whom you trust to hear your story, learn the facts and not judge you? Network theory suggests that there are only up to six degrees of separation between us all (see p4), and in Adelaide it always seems like only two degrees. Imagine if all 17,000 South Australians exposed to the virus talk to someone in their personal networks about hepatitis C, and ask them to talk to some-one else. We could have one big noisy network connecting with the SA community about hepatitis C. Lots of little noises can make one big noisy network. Let’s not allow another 20 years to go by before the SA Hepatitis C Action Plan is implemented. Connect with someone, challenge their fear and ignorance about hepatitis C (and maybe your own too), and celebrate your strengths and successes. HCCSA can support you to make a noise by providing you with any hepatitis C facts you or your networks need to know. Call 8362 8443 or 1300 437 222, or check www.hepccouncilsa.asn.au. We can also celebrate your strengths and successes by publishing your Make a Noise stories in future editions of the Hepatitis C Community News and on our website. Send stories to james@ hepccouncilsa.asn.au; fax 08 8362 8559, or mail PO Box 782, Kent Town, SA 5071. Kerry Paterson
Image © www.luxmart.com
Also, two readers tell their inspirational stories of challenging their own fears, and we also report on how HCCSA is challenging what we believe is ignorance and fear in police policy, with the use of individual’s health information about blood-borne virus status in the new National Police Reference System.
at the Fringe Parade, in front of an estimated 80,000 strong crowd—and our contribution to the parade received colour Advertiser coverage over two days.
Hepatitis C Community News March 2009 •
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Hepatitis C Community News • March 2009
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OPPOSITE PAGE 1: Making the costumes and the walking float for the 2009 Adelaide Fringe Parade 2: The Fringe Parade, 27 February, 2009 THIS PAGE
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3: Ange Panousakis and Jaan Kiploks perform at the Council on March 6, 2009
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4: International artist Heri Dono and friends perform a Wayang show at the Council on March 6, 2009
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Hepatitis C Community News March 2009 •
Making a Noise How to make a difference
‘M
ake a Noise’ makes use of network theory, a facet of which is commonly known as ‘six degrees of separation’. This proposes that anyone on the planet can be connected to any other person on the planet through a chain of acquaintances that has no more than five intermediaries. The theory was first proposed in 1929 by the Hungarian writer Frigyes Karinthy in a short story called ‘Chains’, which was based on a popular idea in Budapest that everybody could be connected socially to everybody else via a few steps. In 1967, American sociologist Stanley Milgram devised a method of testing the theory, which he called ‘the small-world problem’. He randomly selected people in the USA to send packages to a stranger located in Massachusetts. The senders knew the recipient’s name, occupation, and general location. They were instructed to send the package to a person they knew on a first-name basis who they thought was most likely, out of all their friends, to know the target personally. That person would do the same, and so on, until the package was personally delivered to its target recipient. Although the participants expected the chain to include at least a hundred intermediaries, it only took (on average) between five and seven intermediaries to get each package delivered. Milgram’s findings were published in Psychology Today and inspired the phrase ‘six degrees of separation’. The idea reached a sort of popular critical mass in the 1990s. A play-turned-movie with the title Six Degrees of Separation was a success on both stage and screen, and introduced the idea to the people who were neither social scientists nor Hungarians. It became the basis for a popular Hepatitis C Community News • March 2009
game called ‘Six Degrees of Kevin Bacon’, the idea of which is to connect any actor to Kevin Bacon in six moves or less. For example, Cary Grant has a score of 2, as he was in Charade (1963) with Walter Matthau, who was in JFK (1991) with Bacon. Pal (the dog who played Lassie in the original movies) also has a score of 2, starring with June Lockhart in Son of Lassie (1945), while Lockhart was in The Big Picture (1989) with Bacon.
This theory is of particular concern to hepatitis C in two ways. First of all, the ‘six degrees’ theory applies to diseases, both genetically and symptomatically: by researching infections like hepatitis, and using network theory, conclusions can be drawn which will help
Even though this network is huge and contains many people, every person in it is linked to everybody else by only a few steps.
In 2001, Duncan Watts, a professor at Columbia University, continued his own earlier research into the phenomenon and recreated Milgram’s experiment on the Internet. Watts used an e-mail message as the ‘package’ that needed to be delivered, and surprisingly, after reviewing the data collected by 48,000 senders and 19 targets (in 157 countries), Watts found that the average number of intermediaries was indeed, six.
with future research on hepatitis itself. Secondly, it shows a great method for improving the public’s general knowledge about hepatitis C, and in creating momentum for political change. This is the basis for ‘Make a Noise’. Network diagram© Mat Morrison
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Here’s an example: a single person tells 10 friends about their personal experiences with hepatitis C, and gets them to become involved in various ways. Perhaps they write letters on health reform to MPs or the media, or tell others about hepatitis C, or get their local GPs to display hepatitis C information in the clinic. These 10 active people each spread the word to 10 more people, who each spread the word
This is why we’re asking you to make a noise. There’s a state election coming up in 2010. Nationally, there’s significant movement on health reform, with the Federal Government contemplating taking on most of the health services currently managed by the various state governments. South Australia’s Hepatitis C Action Plan is imminent.
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It’s a good time to get noisy. James Morrison For more information on network theory, see the recent ABC documentary ‘How Kevin Bacon Cured Cancer’ at www.abc. net.au/tv/documentaries/ interactive/futuremakers/ ep4/, or else borrow the CDROM featuring this program from the HCCSA library.
10,000
Exponential growth: If each person tells 10 other people, each step leads to a 10-fold increase. In only a few steps, a vast number of people are involved. Here, each Earth is 10 times the surface area of the one before it. Only 6 steps are shown here.
to 10 more, and so on. In six steps that action by one person has led to over 1.1 million people being informed and perhaps made aware of hepatitis C issues. In another four steps, the entire population of the world would be reached. Now, obviously, not every person at every step is going to take action, but even if only some of them do so, a small start and a bit of momentum can end up involving huge numbers of people.
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Hepatitis C Community News March 2009 •
Web Cures and Crowd-Maddening Astroturf
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f you’ve used websites like Myspace, Facebook, YouTube, Bebo, Ning or Twitter before, whether you know it or not you’ve participated in what bleeding-edge IT-wonks call ‘Web 2.0’. You may have even seen our HCQ Facebook, YouTube and Ning pages via our website at www.hepqld.asn. au or the hepcaustralasia.org or hepcaustralia.com.au discussion forums. Pronounced “Web two point oh” the term is a play on the software development practise of sequentially numbering updated software versions with decimal points. Sexy stuff. ‘Web 1.0’, is what you’d retrospectively call the web of the old days, where information was pushed out to you from various websites and your only participation was choosing what you wanted and when. Like selecting from one of those Japanese restaurants where the food goes around on a conveyor belt. ‘Web 2.0’ is all about usergenerated content and sharing - websites where the real meat is created by people like you, the visitor to the website, and the things you say and do can be shared in vast collaborative networks of friends and strangers. This is ‘online social networking’. It’s how you keep track of what your friends ate for breakfast. ‘Crowdsourcing’ is also another buzz-word that gets a lot of play. This is when a repetitive or challenging task is outsourced to a large group of organized individuals (a crowd) via the internet. The free, collaborative online encyclopaedia ‘Wikipedia’ is a great example of this. One interesting new example of these web 2.0 resources is a site called CureTogether www. curetogether.com where patients anonymously share personal medical data and ‘life-track’ measured real-world experiences of their chronic conditions. Hepatitis C Community News • March 2009
For one of the site’s founders, Alexandra Carmichael, the site was a way to make sense of her own very personal chronic condition vulvodynia, and others. CureTogether.com has since expanded to include 158 conditions. As of 16 December 08, although there is a listing for cirrhosis, no one has yet added hepatitis B or C - so there’s a window of opportunity here for some web-savvy reader out there to add their condition! The site enables people to anonymously share and compare notes on symptoms, available treatments, support groups, books and resources, see how friends are feeling, discover patterns in personal health, and learn what makes a condition better or worse. It also provides an open source pool of aggregated anonymous patient data for researchers to crunch and analyze to produce things like Quality of Life studies. Regardless of the merits of the particular site, CureTogether is a key example of a growing and unavoidable convergence between online resources and health. During the presidential campaign, President-elect Obama announced plans to reduce health care costs by increased-use of computerized health records. Google’s new ‘Google Health’ www.google. com/health/ site announced in February last year is another example of this trend, providing web-based personal health records. The declared aim is to enable you to organise all your health information in one place, gather your medical records from doctors, hospitals and pharmacies, keep your doctors up-to-date about your health, and stay informed about important health issues. There are a number of challenges created by these new tools. The obvious concern with most is confidentiality and privacy rights. CureTogether (http://curetogether. com/ privacy.php) and Google Health (https://www.google.com/ health/html/privacy.html) were quick to try address these. It’s up to
you to decide whether their terms are acceptable and whether the benefits of the service outweigh the costs. With websites like CureTogether that share and aggregate anonymous patient experiences, the scene is set for an epic battle between The Wisdom of Crowds, The Madness of Crowds, and the corruptions of ‘astroturfing’, where commercial PR campaigns are faked to look like popular ‘grassroots’ opinions (“My friends and I all love the new Hep-BeGone Elixir, patent-pending, made from real unicorn tears”). However, the potential real-world benefits of these technologies are huge. Google recently demonstrated on a new ‘Flu Trends’ website that, because regular people like you and me use their Google search-engine to search for information about flu symptoms, Google is now able to aggregate this data across all users to estimate U.S. state-by-state flu activity two weeks faster than traditional flu surveillance systems like those used by the U.S. Centers for Disease Control and Prevention (CDC). As consumers and early-adopters in e-health promotion it is incumbent upon communitybased-organisations (like HCQ) and their members to help focus and shift these technology trends wherever possible in the directions of free-access, patient-rights, confidentiality, and informed consent. These must be negotiated however in light of the huge advances and cost-savings that will be made available in the areas of health care, consumer-information, online support, medical research and epidemiology. That should keep us busy until Web 3.0. Which will probably have something to do with robots. Brad Colbourne Health Communications Officer, Hepatitis Council of QLD
Becoming Free Acceptance, freedom and education
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viewed a documentary last year about a man who had shocking physical disfigurements he had inflicted upon himself. His story was extremely moving, and he was fascinating. Toward the end of the program he said that he was able to help others these days because he has the courage to be open about himself and his emotions. He said that by freeing himself he was now able to help free others. I didn’t really understand what he meant at the time, but he had made such an impression on me that I found myself thinking about him and the things he had said for weeks after, because I’ve always wondered about this life of mine, what it is all about, and the mark I will leave on the world. That was when I realised that I wasn’t free. I have hepatitis C, and have spent much of my life avoiding the truth, especially in the workplace and new social situations, because I’ve always felt a social pressure to do so. This hasn’t been very good for my inner self, and my self-esteem has taken a battering along the way because of it, so I decided to make some changes, for myself,
and—who knows—maybe even the world. I began by educating myself about hepatitis C, because I believe we can only do better when we know better. I found it all very enlightening, and I started making the necessary changes to improve my health immediately, and in no time I felt better than I had in years. While doing my research, I was also drawn to the issue of discrimination many others with the disease have to deal with on a daily basis, and I thought that it would be nice if the community at large could learn to be a tolerant and supportive community. So now, whenever I feel safe and secure, I am honest about having hepatitis C. I don’t need to tell all the nittygritty about things in my past. I can gloss over large chunks because most of it is just drama anyway, and with this new acceptance within myself I have the control. I tell you, this gaining of control over my life has been wonderful— in fact, powerful. At the same time, I use this opportunity to educate the people I am open with a little about
the disease, trusting that they in turn are armed with the correct knowledge to educate others. I believe this will be a positive process for everyone involved, because as people gain understanding about hepatitis C, they won’t be so afraid and full of fear about the unknown. My hope is that the wider community will become more accepting about hepatitis C, which will help everyone affected be able to get on with their lives by seeking help if needed, and treatment if required, because shame and secrecy won’t be necessary. I know my changes are small, but most change starts with baby steps. Just imagine: if everyone that has the disease could share the correct information about hepatitis C with just two people, approximately 500,000 people in Australia alone would be on the way towards helping break the current moral and structural barriers. And can you imagine an Australia with minimal new infection rates of hepatitis C because those at risk have the opportunity to stop the spread of the infection? I can. Debra
Image © Colin E. Johnson (http://whimshot.com) Hepatitis C Community News March 2009 •
Political Speech Spreading the word to SA’s MPs
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stood at the entrance to Parliament House, glancing back to North Terrace for a mental snapshot of this moment. The chatter of my mind demanded answers to just two questions... “What the hell are you doing?” and “Are you crazy?” Both good questions, considering I was about to stand in front of more than two dozen members of one of the major political parties in the South Australian Parliament and tell them that I have hep C, and how living with it impacts on my life.
This invitation to share my experience with some of the ‘decision-makers’ of our state was, I believe, an opportunity to challenge any stereotypes held of ‘a person with hep C’, and despite the stigma and discrimination reserved for people who have hep C, I am not ashamed about having it. I like myself. I didn’t set out to get hep C. I didn’t know what it was until my doctor told me I had
it. Hep C is just a part of my life that I live with as best I can. I am a mother, a wife, a daughter, a sister. I am someone’s best friend. I work, I volunteer and I have good friends. I have a life. Just like the many other people who live with hep C. It was a very powerful experience. The meeting room was full, whispering voices humming quietly. As I spoke the room fell silent. I tell my story from my heart, with the emotion of a person who has experienced just about everything hep C can throw at you. They were listening to my story—really listening to what I had decided to share with them. I felt a little overwhelmed by the time I had finished. Tentatively, the questions began. Questions that were respectful, relevant and insightful. Some quietly asked about “someone they know who...” and “should they get tested?” I felt that there was a level of realisation that it could easily be their wife, mother, sister—or even themselves in my place, telling this story. I wasn’t really that different to them. I was thanked on behalf of ‘the party’, but was surprised by the many members who came forward, shook my hand and thanked me personally. They had learnt something from me and my story—maybe it would influence a future decision. Who knows?
Lynn Newman
Hepatitis C Community News 10 • March 2009
Image © Niclas Lindh
For me, having hep C isn’t something to be ashamed of. It’s just the way it is. I feel proud and very pleased with my decision to share a part of my life story with these influential strangers. Maybe I made a difference.
Connecting with Politicians
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CCSA and Hepatitis Australia, the national peak hepatitis body with representatives from all state and territory hepatitis organisations, are meeting with a number of politicians to make a noise about hepatitis C issues. In South Australia, HCCSA Board member Carol Holly and executive officer Kerry Paterson met with Jane Lomax-Smith, Minister for Mental Health and Substance Misuse, to discuss the need for enhanced hepatitis C prevention efforts such as the expansion and diversification of the Clean Needle Program and blood-borne virus prevention content included in the drug education courses in schools in South Australia. A further meeting has been arranged with the Minister for Health, John Hill, in April. Kerry Paterson also joined Helen Tyrell, CEO of Hepatitis Australia, at Parliament House Canberra to meet with Steve Georganas, Member for Hindmarsh and Chair of the House of Representatives Standing Committee on Health and Ageing, to seek support for a national public awareness campaign, an enhancement of the hepatitis C prevention program, and improved access to hepatitis C treatment to prevent an epidemic of end-stage liver disease in the coming years.
Are you happy with your GP? If you are, we need to hear from you.* We are updating our Hep C-friendly GP list for metro and rural areas. Please call Deborah on 1300 437 222. *We approach GPs for permission before putting their names on our list, and we do not reveal who nominated them. Hepatitis C Community News March 2009 • 11
Police, Privacy and Blood The Council’s concerns about the new National Police Reference System
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e publish here an exchange of letters and emails between the Hepatitis C Council of SA (HCCSA) and the South Australian Police (SAPOL) about a recently introduced form of interstate police co-operation which may well have an effect on some people living with hepatitis C. This police program is described in this report from the Australian Associated Press.
Here are the letters and emails, some of which have been edited for length and to remove sensitive details. The sense of each letter has not been changed.
From Kerry Paterson, Hepatitis C Council of SA Executive Officer, to Malcolm Hyde, South Australia’s Commissioner of Police 13 January 2009
Australian Associated Press 12th January 2009 Police can detect interstate criminals Interstate criminals using NSW as a hide-out can now be detected immediately by police thanks to a new mobile tracking tool. From Monday, police on patrol in NSW have access to the National Police Reference System (NPRS) on which they can immediately view information on criminals from outside the state. The technology will allow police on patrol to query interstate details on suspects who may have no criminal history in NSW. Some of the many potential uses include alerting officers to people who may be carrying weapons or who have a contagious disease such as hepatitis. Previously, police only had access to the state-based system that contains information about criminal activity in NSW. “This is groundbreaking technology that will not only assist police in catching wanted criminals but will provide police officers with additional safety,” NSW Police Minister Tony Kelly said in a statement. The new system also means other states will have access to details in the NSW criminal database. “Criminals no longer have any place to hide by fleeing interstate,” Mr Kelly said.
Hepatitis C Community News 12 • March 2009
I am writing to express my concerns about the potential use of health data in relation to hepatitis C in the new National Police Reference System, as quoted in the media today: “Some of the many potential uses include alerting officers to people who may be carrying weapons or who have a contagious disease such as hepatitis.” Information about an individual’s hepatitis C status is health data, not criminal data. Hepatitis C is poorly understood by the general public (and I dare say that this would include the Police), including hepatitis C diagnosis test results to identify whether an individual has the virus or has in fact only been exposed to the virus and has cleared it from his/her body and can therefore not transmit the virus to others. Also, if someone has had pharmaceutical treatment for hepatitis C and cleared the virus, they will also not be able to transmit the virus, yet they will remain hepatitis C positive to the antibody test. I cannot imagine that the NPRS would have the level of medical sophistication needed to determine accurate information about the potential for someone to pose some risk of transmission of the hepatitis C virus. Also with a ‘window period’ for
seroconversion to hepatitis C antibodies, such a system could not be accurate in detecting all instances of hepatitis C infection. Thus, reliance on hepatitis C status information in the NPRS as a measure to protect police officers from hepatitis C infection is flawed, and rather than contributing to the safety of Police Officers or the general public, this policy only serves to further discriminate against all Australians living with this chronic condition. The best protection from the risk of blood-borne viruses for all police officers is to be blood-aware, with adherence to standard infection control measures in searching suspects or property, and in dealing with blood spills or other risks from blood-borne viruses.
From Mal Hyde to Kerry Paterson 16 February 2009 ..in relation to the recording of persons with hepatitis C on the National Police Reference System (NPRS): each State/Territory provides data to the NPRS which is used for policing purposes only. SAPOL do not record a list of people who have any medical or contagious disease. SAPOL may record information relating to a contagious disease against a person, who is recorded for police purposes only. This type of information recorded within SAPOL is only associated to a person if there is substantiating evidence, and is information that relates to a police event and is used by police employees for their awareness and safety and the individual’s safety. Pursuant to the Freedom of Information Act 1991, this type of information is not released, as it: • refers to personal information;
• may prejudice the maintenance or enforcement of any lawful method or procedure for protecting public safety; • may prejudice any system or procedure for the protection of persons or property; • or may have a substantial adverse effect on the effective performance by an agency of the agency’s functions.
further what action the SA Police are taking to safeguard people’s private health information, now that they have access to this information in the new National Police Reference System. I wrote to the SA Police Commissioner about the Council’s concerns with this new system, (but at this time did not even mention the potential for privacy breaches), and within a couple of weeks of its introduction we have received this complaint. I would appreciate your response to this email and the concerns expressed about SA Police having access to people’s private health information, particularly when that information concerns a highly stigmatised health condition. Thank you.
From Kerry Paterson to the SA Police Complaints Authority 16 February 2009 The Hepatitis C Council of SA received a disturbing call last Tuesday, 10 February, at 3.30pm from a young woman who was extremely distressed about an incident that had just occurred with a Police Officer in Rundle Mall. As reported to our phoneline staff member, during the course of their interaction the female Police Officer, by checking the National Police Referencing System with a hand-held device, then said to the young woman, “You dirty little bitch, you’ve got hep C!” loudly enough for her companions and others in the Mall to hear this. The young woman rang off shortly after telling our staff member about this incident, so it is not possible for us to trace her to support her further action in making a complaint for herself. However, I believe the Police Complaints Authority should be aware of this breach of private health information, and investigate
From Kerry Paterson to Mal Hyde, South Australia’s Commissioner of Police 20 January 2009 Thank you for your response to my first letter about my concerns regarding the National Police Referencing System. I did have further enquiries and rang [contact details removed] at SAPOL’s Information Services Branch. Unfortunately this person was unable to assist me with all my further enquiries and advised me that the nature of these queries was an Operational matter, and suggested I write to you again, so that my query could be directed to the appropriate section of the SA Police Department for a response. I understand from my contact with the Information Services Branch that gathering a person’s blood-borne virus health status information is for risk management purposes, and that the only way information is gathered about a
person’s blood-borne virus status by the Police is if that person volunteers this information. The letter, however, did state that “this type of information recorded within SAPOL is only associated to a person if there is substantiating evidence”. Could you please clarify what the nature of substantiating evidence is and from what sources this evidence is collected?
Image © Owen James
• may prejudice the effectiveness of any lawful method or procedure for preventing, detecting, investigating or dealing with any contravention or possible contravention of the law (including any revenue law);
I am particularly interested in knowing in what ways procedures used by the Police would differ between managing a person who was recorded on the NPRS as having a blood-borne virus such as hepatitis C, to management procedures used with those who either did not volunteer this information or did not know they had a blood-borne virus: in other words, when someone has a blood-borne virus, but you do not know this. The point I am making in this last query is that all blood should be treated as potentially infectious, and I would expect that the Police do adopt standard precautions for infection control to minimise the risks of transmission when dealing with all blood exposures. This is the case in other work environments with high levels of potential blood exposure such as healthcare settings and emergency services settings, which do not rely on disclosure of blood-borne viruses to manage infection control. If there is no difference in Police procedures for managing blood exposures, what is the reason for collecting this sensitive health information? I look forward to your response to these enquiries.
We will keep you informed of further developments. Hepatitis C Community News March 2009 • 13
C-Chat Outreach Peer Education Project Do you need a Hep C peer educator to assist in your work?
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he outreach Peer Education Project has been running since September 2008, and over this period we have been busy establishing the service as well as recruiting and training peer educators. We now have the pleasure to announce that we have 10 peer educators from a range of backgrounds and experiences. It was a tough job selecting 10 out of the 18 applicants who put their hands up to be part of this project, even though it meant publicly disclosing their hepatitis C status. The number of applicants demonstrates individuals’ desires to take a stand and contribute towards the education of the general community and add to the support for those affected by hepatitis C. The project is now successfully placing peer educators within different services. Peer educators are going into organisations and supporting their work, by providing clients with opportunities to talk and gain accurate information about hepatitis C transmission, treatment and testing. Clients get information about different services available, as well as speaking to someone who has had the experience of living with hepatitis C and all this implies. Currently we have peer educators placed at Mission Australia’s Hindmarsh sobering-up unit, the Vietnamese Community in SA, drug and alcohol services at Warinilla, Joslin and Elizabeth, and the Aboriginal Sobriety Group Inc. All placements look different and have different contexts. The project is happy to negotiate and adapt to the service’s needs in order to ensure peer educators can have the opportunity to be in touch with clients who would benefit from the connection and the sharing of their experiences.
Hepatitis C Community News 14 • March 2009
If you think your service and your clients may benefit from connecting with a peer educator, then contact the project coordinator, Lola Aviles, to negotiate new opportunities (phone 8362 8443 or email lola@ hepccouncilsa.asn.au).
Peer Educators reflect on their involvement in the project: What has been your experience? It’s been a good and enlightening experience learning more about hep c and having the right information. I tried to get myself involved so as to get away from drug culture. Now I identify with the workers, not with the drug users, and this is important to me. It was hard to get people to engage in my particular program, which is disappointing. Working at Adelaide’s only afterhours CNP, it has been difficult to interact with clients. They are in a hurry; they just don’t want to talk about health matters. But maybe once a night you will get someone who will talk briefly about it. I introduce myself a lot which is good, though. Overall my experience has been very positive and rewarding: there is always someone in the group that is grateful for the information. Having had no practical experience I am only able to articulate how fulfilling the training and continued debriefs have been. For instance, I arrive from a dark personal circumstance and, holistically, the education, social interaction and facilitation of the Hepatitis C Council have been most beneficial in my reeducation into a social, work and educational setting.
What have been the difficult things? Some people are reluctant and don’t want to know. Some people still have a barrier against talking about it. It’s hard unravelling the myths. Meetings after working, late on a Thursday night. They are good people down there, very welcoming. I work with one other guy—there are three of us there. We cook up a meal. It’s a drawcard to get people in to the Vietnamese community centre. There are a core group who come and others are the extras. 10 to 20% speak broken English—that is the hardest thing. To get people to open up, the ignorance in regards to hepatitis c in general, and also denial is a big one! The most difficult aspect is probably getting the evaluations filled in at the end of the session! For me, I feel substantial frustration at not being able to put into practice what I have learned as I don’t have an agency placement yet. I aspire to contribute to my community in a way that makes a positive difference. What have been the interesting things? Helping people cope with hep c. It’s entertaining being part of the council and meeting new people. It’s been great sharing art and counseling. Sharing meals and being part of the Fringe has been a great bonus. Learning about the whole hep C thing has been interesting. Meeting people, both the staff and the clients has been very interesting. I can have quite different reactions with clients, though; sadness, handy reminders, shock, the age of some clients, and just all the different
Some of the HCCSA Peer Educators, possibly not taking the photographer seriously
groups you get, like labourers, nurses, constructions, council, unemployed, professionals, everything.
A big learning curve—it will take time, but it’s a great road to travel. They’re great people, and it’s great to be able to share my experience.
The interesting aspect for me is meeting new people and hearing their stories. It’s quite insightful to hear how people cope with their life challenges—I find it quite moving that they have made that positive step in enrolling in a detox program.
I am proud of having done the training. It’s been good to be part of such a good group of people and forming new friendships. It’s been good to feel that you are back in the workforce. It’s very positive and challenging. My life has improved, I am proud to be a part of this. Still a lot of learning to do, though. The extra money has been an enormous help.
All experiences are interesting to me, especially new ones. I have found this journey a challenge, yet relatively easy because of my own experience with hep c. Overall, this course has encompassed the entirety of what it is to learn, to grow and to move on. How would you describe your experience of being involved with the Council?
I’m hopefully only at the beginning of my experience as a peer educator with the Council. But so far I’ve found it interesting and I’m learning and it has been fun too at times. I’ve really loved meeting and interacting and discussing things with the staff at the Hindmarsh Centre. I really do like meetings, and there have been
plenty of those, so onwards and upwards I say! My experience working for the Council as a peer educator is very rewarding, as it is obvious when doing the work that this information is essential to help stop the spread of hepatitis C. Also, relating my own positive experiences of undergoing two lots of treatment may help someone decide to give it a go. The Council, as always, has been definitively supportive. I feel a sense of friendship with all members that transcends ideas of ‘job descriptions’. I feel like a family member. A learning curve—it’s been a great experience dealing with and helping people with issues that I can share due to my own experience.
Hepatitis C Community News March 2009 • 15
council news
Brain Fog Explained? Anti-Poverty Week (October 12-18)
R
esearchers have found evidence of hepatitis C virus in brain cells suggesting a biological reason for the “brain fog”, fatigue and depression experienced by some people with hepatitis C. At the recent 16th National Symposium on Hepatitis B and C in Melbourne, Prof. Jorge Rakela of the Mayo Clinic Scottsdale, Arizona said a study of autopsy brain tissues found negative and positive strands of the hepatitis C virus in the medulla oblongata and cerebellum of three out of six HCV-positive patients.
researchers have found that the hepatitis C virus in these blood cells often appear to be a minor variant with genomic sequences different to those in the serum (blood fluid) and the liver. Interestingly, the replicating strands found in brain cells are similar to those found in the blood cells indicating a link between the two sites of infection. The white blood cells (leukocytes) in which hepatitis C virus have been found to replicate include B cells, T cells, monocytes and
macrophages (cells that engulf and digest cellular debris and germs). Because monocytes migrate from the bloodstream to other tissues, settle there and differentiate into macrophages in the new location, it is postulated that this could be the way by which the hepatitis C virus is able to penetrate the bloodbrain barrier. There is emerging evidence that in people with HIV-hepatitis C co-infection, the HIV could facilitate the replication of hepatitis C outside of the liver. How this actually happens is still unclear but
Prof Rakela said the positive and negative viral strands are replicative forms of the virus indicating active replication of the virus in brain cells – specifically in the Central Nervous System. He said this finding was confirmed by another group in the United Kingdom using a different method. The significance of this finding is its contribution to understanding the reason behind the neuropsychiatric symptoms experienced by people with chronic hepatitis C. There is growing evidence that people living with hepatitis C are more likely to experience fatigue, depression and other cognitive dysfunction than people with liver disease from other causes. This could not be linked to the severity of liver dysfunction.
Thought by many to replicate only in the liver, hepatitis C virus is now known to also replicate in certain types of white blood cells (peripheral blood mononuclear cells - PBMC). Furthermore, Hepatitis C Community News 16 • March 2009
Cartoon © Verônica Lacerda
Studies have found that besides impairment on cognitive tasks, people with chronic hepatitis C also displayed impairments in power of concentration and speed of working memory, independent of the person’s history of mental illness and drug use.
there is speculation that it could be the effect of general suppression of the immune system. This is supported by a small study which found more replicating hepatitis C virus in the blood cells in patients after liver transplants (on immune suppression drugs) than in patients before liver transplants. Other possible mechanisms include virus to virus interactions within cells that harbour both viruses. It had also been demonstrated that even after treatment-induced or spontaneous clearance, the hepatitis C virus may linger for years at sites outside the liver. Although it was long believed that white blood cells cannot enter the Central Nervous System, it is now known that they are able to enter the brain under certain conditions. Prof Rakela and his team postulated that infected leukocytes cross the blood-brain barrier, leading to secondary spread of the hepatitis C virus to certain types of brain cells. These brain cells are basically white blood cells which – as part of normal cell development and replication process – have settled in the brain, changed into brain-resident cells and multiplied. These infected cells then release proteins which induce inflammation causing alteration in brain function and neuro-cognitive dysfunction and depression.
Individual Membership will continue from year to year without the need for renewal, as long as contact details provided remain current. You are able to resign your membership at any time. To update contact details for continuing membership or to resign your membership, please phone HCCSA Administration on 8362 8443.
Prof Rakela stressed that more research is needed to test the hypothesis. He also said that no change was noted in the brain tissues where the hepatitis C viral strands were found, an indication that the brain cells themselves were unchanged by the invasion. Cecilia Lim Reference: Emerging evidence of hepatitis C virus neuroinvasion. Tomasz Laskus, Marek Radkowski, Debra M Adair, Jeffery Wilkinson, Adrienne C Scheck and Jorge Rakela. 2005 Lippincott Williams & Wilkins. Hepatitis C Community News March 2009 • 17
So go out and...
MAKE A NOISE! Remember the three Cs:
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Hepatitis C Community News 18 • March 2009
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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. Call the Council’s Info and Support Line for information on 1300 437 222 (for the cost of a local call anywhere in SA). 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) 8210 0809 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 24-hour 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) 8362 0395 AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/homosexually active people, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611
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. The Council offers a meeting room suitable for workshops, presentations, formal and informal meetings. It is a spacious area suitable for up to 30 participants.
Meeting Room Hire at the
The room has modern, self-contained kitchen and bathroom facilities. It also contains an electronic whiteboard, and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability). Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.
Community members affected by hepatitis C are encouraged to use the room at no cost.
Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au Hepatitis C Community News March 2009 • 19
THE first week after Jack’s diagnosis...
I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c! I’VE GOT hepatitis c!
Hepatitis C Community News 20 • March 2009
to be continued!