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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

Community News #34 • December 2006

Awareness Week in Review • Online Resources


The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Freecall: Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1800 021 133 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au

STAFF Acting Manager: Kerry Paterson Senior Administration Officer: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Steve Lyn Will Mark Judy Anne Debra Janette Annette Michele Wendy Education Coordinator/Rural Education: Leslie Wightman Metropolitan Educator: Nicci Parkin Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Claire Maggie Thuy Lyn Phil Publications Officer: James Morrison Librarian: Joy Sims

BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood Treasurer: Carol Holly Senior Staff Representative: Kerry Paterson Ordinary Members: Leslie Dunbar Enaam Oudih Anthea Krieg Nick Taylor

Unless otherwise noted, articles are written by the editor. Probably. Well, not the editorial, but the rest.

Editorial

Useful Contacts & Community Links

Welcome to the spring edition of Hepatitis C Community News. Featured in this issue is a survey of online resources dealing with hepatitis C. Reliable and up-to-date information is essential for anyone who has been diagnosed with hepatitis C and is seeking to manage their health. We take a look at several useful sites on the internet, including discussion forums, and we show you around the Hepatitis C Council’s own upgraded website.

Hepatitis C Council of SA Provides information, education, support to the hepatitis C community and those at risk of infection. 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.

Staying healthy with hepatitis C was an important message of the recent Hepatitis C Awareness Week. In this issue you’ll find information on oral health and alcohol intake for people living with hepatitis C, articles on some different ways of countering depression, and our regular Q&A section. There’s also news about the Getting It Together project, which is working to give a voice to people affected by hepatitis C in rural and remote areas. We also feature a cartoon story that comes out of the GIT project. It describes the consequences of a person being inadequately advised about the results of a hepatitis C test. We hope you enjoy reading Hepatitis C Community News. And please visit the Council’s web-site at www.hepccouncilsa.asn.au to access information on hepatitis C, search our library catalogue, find out what’s on, or link to other sites. You can also download digital stories told by people living with hepatitis C. A call for help: The title of this magazine is straightforward but dull. Sure, it says what we are, but it’s not exactly thrilling. Do you have a better name? Let us know at editor@hepccouncilsa.asn.au.

Contents Cover: A fortuitous meeting during Awareness Week - see page 2 Online Focus 9 A Guide to the HCCSA Website 10 The Rough Guide to Hep C Info Online 11 HCCSA Library Online 12 Online Forums: The AHCS and Hep C Australasia Depression Information 14 Weightlifting & Depression 16 Finding the Joy Plus... 1 2 4 5 7 8

2005-06 in Review Hepatitis C Awareness Week in Pictures GIT ‘Toons Helen’s Story Hepatitis C & Oral Health Hepatitis C & Alcohol

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. Are you still reading this? Why are you still reading this?

Call the Council’s Hep C Info and Support Line for information on (08) 8362 8443 or, for rural callers, 1800 02 11 33 (freecall). 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 culturally and linguistically diverse backgrounds. (08) 8223 4566 Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander people. (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 169 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) 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 recieve 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 men, 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 the choice of two meeting rooms, both of which are suitable for workshops, presentations, formal and informal meetings. The ground floor has disabled access and can accommodate up to 20 people. Upstairs is a spacious area suitable for up to 30 participants.

Meeting Room Hire at the

Both rooms have modern, self-contained kitchen and bathroom facilities. The upstairs room has 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 rooms 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


2005-06 in Review In November 2005, the Hepatitis C Council of SA launched its Strategic Directions 2005-2008 following an extensive consultation process, to coincide with its first 3-year service agreement signed with the HIV, Hepatitis C Policy and Programs Unit at the Department of Health. This longer-term funding security has enabled the council to better plan, develop and implement the hepatitis C education, information, referral and support services we provide for the South Australian community.

The advocacy role of the council has also been developed during this year as we began a process of engagement with politicians about hepatitis C. Following the survey of political candidates detailed in the last issue of this magazine, meetings have been held with John Hill, the Health Minister; Carmel Zollo, Minister for Corrections, advisors to Gail Gago, Minister for Substance Misuse, and, later in the year, a briefing has been organised for the Opposition Members of Parliament. HCCSA continues its representative role on the South Australian Advisory Committee on HIV, Hepatitis C and Related Diseases, and its Hepatitis C Sub-Committee at the state level. During the year, work continued on the document Hepatitis C Priorities for Action 2007, which was developed out of the Hepatitis C Planning Day held in 2005 with a range of key stakeholders, to achieve a coordinated approach to the hepatitis C response in SA, in lieu of a state Hepatitis C Strategy. Final consultation will be undertaken on this document in late 2006, and it is due for release in early 2007.

Many staff members of the HCCSA also participate on a number of project advisory and planning committees at the local level. During this year, council staff have been involved in projects to provide improved access to hepatitis C treatment for indigenous people and people who inject drugs. HCCSA and a number of other non-government organisations in the HIV and hepatitis C sector began a series of meetings this year with the Department for Correctional Services and the SA Prison Health Service to develop a memorandum of understanding. This process was undertaken largely to address issues of access for prisoners to external agencies providing health education within correctional settings. While the memorandum of understanding is not yet completed, the HCCSA has been able to provide hepatitis C education for key prison staff and female prisoners.

This Virus Hepatitis C

  Wondering where to turn to discuss your concern, your worries, your fears, it is easy to fall; to lose your way. To feel alone, sorrow’s prey. Aware of society’s ruthless gaze.

We’re a wary lot, you see,   those of us who have this strange disease.   Too often have we held out our hands   in friendship and in peace   in hope that our isolation will cease,   to be met instead with fear,  prejudice and scorn.     No one knew the truth   of the paths that we took in youth.   That some would pay such a price   for the life that was made.   We may not gently fade   in time, this sentence forever hanging   in fog to blind mind’s eye.     No comfort in a patient’s trust.   “You’re making so much fuss,”   doctors say as they shy away.   “Don’t come too near,”   is the message in their fear.  

This year, the HCCSA Board approved the proposal for our organisation to offer zero-cost membership for individuals with direct experience of hepatitis C. This removes financial barriers to keeping up to date with hepatitis C information and services. The volunteer program at the Council has undergone considerable development during the past year, with a new volunteer brochure developed and recruitment procedures updated. A new intake of nine telephone information and support volunteers were recruited, planning began for revamping the council’s C Talk program of positive speakers, and six volunteers were active in the Information and Resources team during this time. All of us at the Council were greatly saddened by the death of John Shannon in November 2005, one of our volunteers who had contributed so much of his time, creative energy and enthusiasm to the council over many years. Kerry Paterson Acting General Manager

Labeled with the tarring   brush, we leave.    It can be a lonely place   living on the outer edge. But friendships form in unforeseen places. Strengths found amongst the faces of those we may never have met if life had taken a different path, lends resilience; creates a staff, support upon which to carve our understanding. Anne Jackson Hepatitis C Community News December 2006 • 


Hepatitis C Awareness Week in Pictures Balloons, badges, armbands, paper planes and paper buses were all given away to promote hepatitis C awareness.

Josie Agius, Kaurna elder and representative of Hackney’s traditional owners, opens proceedings on launch day (above left), while mascot Oliver (above centre) peeks at the crowd (above right).

South Australian Health Minister John Hill officially launches Hepatitis C Awareness Week in SA (above left). A central feature of many Awareness Week events was the promotional bus (above centre), hundreds of cut-and-fold model versions of which (right) were given away by Oliver and friends.

Oliver presents Minister Hill (above right) with his membership card for the revamped and improved Hepatitis Council library (see page 11), and later in the day he met Federal Opposition Leader Kim Beazley (above left). Hepatitis C Community News  • December 2006


Kerry Paterson, the Hepatitis C Council of SA’s manager, speaks during the launch (above left). One of the many information displays (above centre) set up for the week, this one at the Royal Adelaide Hospital. Oliver meets the kids at the Parks Community Centre in Angle Park (above and below right).

The Awareness Week promotional display in the window of Radio Adelaide on North Terrace (above left). One of the numerous hugely popular ‘437 2’ promotional armbands given away during the week (right). What does ‘437 2’ represent? Have a look at your phone’s keypad for the answer.

Oliver entertains the school-holiday crowds in Rundle Mall (above left) and celebrates with a stylish umbrella outside the Hepatitis C Council on launch day (above right). Hepatitis C Community News December 2006 • 


community news

GIT ‘Toons Speak Louder Than Words Rural Action on Hepatitis C The Getting It Together (GIT) Project commenced in May 2005 with the aim of strengthening the voices of people affected by hepatitis C who live in rural, regional and remote South Australia. A strategy of the Getting It Together project was to provide an opportunity for network participants to articulate important aspects of their stories and their experiences of living with hepatitis C. Participants chose to tell their stories through cartooning and digital forms. Along the way the group identified many issues significant to people living in rural SA. Some of these included: • lack of access to quality information, • the negative impact of an unsupported hepatitis C diagnosis, • fear of breaches of confidentiality, • stigmatisation of people who inject drugs and people diagnosed with hepatitis C, • inequality in the provision of health services based on how a person got hepatitis C, and • difficulty accessing equipment and information about safe injecting.

While these stories were those of people living in rural South Australia, the emotions described and issues raised are frequently articulated by many people diagnosed with hepatitis C. A common theme running through this series of cartoons is the shock associated with an unsupported diagnosis. Quite often people find that the stress associated with an unsupported diagnosis made them feel more ‘unwell’ than the virus itself. Helen’s story, printed over the next two pages, describes the anguish of believing for 12 years that she had the virus when in fact she only had the antibodies. Another participant, Robbie, provided an insight into the potential impact of the virus on many areas of life: relationships, work, and physical and emotional wellbeing. A third participant, Karen, described the

shock of receiving a letter—with her diagnosis—in the post after giving blood through a blood bank. Robbie and Karen will have their stories featured in future editions of this magazine, and all will be included in a forthcoming publication featuring the best work to emerge from the GIT Project. These and other stories need airing as they have the power to connect people and inform the work of health planners and service providers. Thank you to all who participated in the GIT Project, especially to the rural participants: Helen, Robbie, Pamela and Karen. Giving the stories flight were Roxanne Adams (Relationships Australia), Nicci Parkin (HCCSA) and cartoonist James Morrison (HCCSA). Thanks also to the GIT community workers, Michelle Morrison and Gary Clarke. For more information on the Getting it Together Project, contact Leslie Wightman, the HCCSA’s Acting Education Coordinator on (08) 8362 8442 or 1800 021 133, or email leslie@hepccouncilsa.asn. au. Leslie Wightman

Hepatitis C Community News  • December 2006


Helen’s Story A Comic Biography from the Getting It Together Rural Project You can’t imagine what it felt like to be thinking that you’re going to die of some illness that you have just been diagnosed with, but have no idea when this might happen—an uncertain future with five thriving children. I felt that I was being judged so harshly in the general community because I had been identified as a

‘user’. This is particularly difficult in a small country town, where it is so hard to crawl your way back and be given opportunities.

is that it has turned out that I don’t have the virus, and I lived for 12 years with an incomplete diagnosis.

I felt as though nothing was confidential: ‘hepatitis C’ plastered over my medical files for clinic staff to see. These people are my neighbours—and parents, just like me. What is even more shocking

Nowadays I feel like I don’t fit anywhere; no longer ‘using’, and with a sense that I will never be a part of the mainstream community. This can be really tough, especially when you have children.

Hepatitis C Community News December 2006 • 


People in Rural SA: GIT Linked Up in 2007 Do you have hepatitis C and live in rural SA? Want to know more about hepatitis C? Want to talk with other people living in rural SA? As of February 2007, participants of the Getting It Together network will be facilitating monthly phone link-ups for people interested in connecting with others and getting more information about living with hepatitis C. For more information, contact Leslie Wightman on 8362 8443 or 1800 021 133, or email leslie@hepccouncilsa.asn.au.

Hepatitis C Community News  • December 2006


A Gnashing of Teeth Hepatitis C and oral health Oral health problems are a serious and often forgotten aspect of living with hepatitis C. This potential neglect needs to be overcome, and there is some information that everyone who has the virus ought to know. Up to 60% of people who are living with hepatitis C experience liver damage and other health problems, including damage to the teeth, gums and mouth. Problems to be aware of include: • an increased risk of tooth decay; • an increased risk of periodontal disease (infections of the parts of the gum closest to the teeth); • an increased risk of sensitive teeth; • an increased risk of having a sore mouth (often a burning sensation); • an increased risk of white lichen patches in the mouth; and • an increased risk of bleeding associated with dental procedures (especially when a person has cirrhosis).

Saliva plays an extremely important role in the mouth. Although consisting mostly of water, it includes a number of other very important substances in small concentrations. These include various antibacterial compounds and a number of enzymes. As the amounts of these reduce, infections and tooth decay may increase. The acidity of saliva is also important, the normal balance both protecting the teeth and beginning the breakdown of food (digestion actually begins in the mouth rather than the stomach). Xerostomia changes this acidity level, meaning that the saliva begins to attack and break down the teeth. Roughly half of all people who have hepatitis C will experience problems as a result of this salivary gland dysfunction. Many others will also suffer this dysfunction,

As well as the direct health problems from infections and tooth decay, people with compromised oral health often suffer from a range of secondary problems. Toothache or mouth aches can severely disrupt eating, relaxing and sleeping, while visibly damaged teeth can wreck a person’s self-esteem through worrying about their appearance. For many, a combination of these problems will then lead to reluctance to even leave the house, often resulting in social isolation. What can be done about all of this? In South Australia, the Special Needs Unit of the Adelaide Dental Hospital is the main place to go for advice, appropriate treatment and help with preventative measures. The Hepatitis C Council of SA can refer people to the Unit, as can doctors, dentists, government dental clinics, the Royal Adelaide Hospital and the Drug and Alcohol Services Council of South Australia. Call us on 8362 8443 or 1800 021 133 for more information. The HCCSA also produces an information sheet on hepatitis C and dental care, which includes a number of practical things you can do each day. Call us to have a copy sent out to you.

What is the cause of all this trouble? It’s a condition known as xerostomia, or an increased incidence of dry mouth, caused by a malfunction of the salivary glands. This simple change to the body gives rise to all of the complex problems listed above.

but not to a degree where clinical symptoms develop. To make things worse, a number of medications commonly used by people living with hepatitis C (such as antidepressants, antivirals and methadone) can exacerbate this condition. Hepatitis C Community News December 2006 • 


How Not to Pickle Your Liver Managing the cocktail of alcohol, hepatitis C and treatment The link between hepatitis C and the risk of liver damage is wellknown. The link between heavy drinking and the risk of liver damage is equally well known. So if you are living with hepatitis C and like your booze, what do you need to bear in mind? Hepatitis aside, just being a drinking Australian has its problems. One study in 2001 found more than a third of Australians aged 14 or over put themselves at risk of alcoholcaused damage at least once in the previous year. Alcohol itself is hepatoxic (poisonous to the liver), and in high enough quantities can cause fatal poisoning. This is true for everyone, no matter what other

4. In both cases, one or two days a week should be alcohol free. These guidelines are for people of average weight, so if you are below average weight you may need to reduce these recommended limits. If you are living with hepatitis C, these guidelines become the absolute upper limit for maintaining good health. However, some authorities recommend drinking less—perhaps only 1 standard drink per day, with regular alcohol-free days. There are some studies to suggest that drinking alcohol may affect the efficacy of hepatitis C treatment. A number of studies have found that, although there is no difference in the level of successful response

It’s important to know when to stop drinking for the night. health conditions they may have. For people with hepatitis C, the potential for damage over the long term is particularly significant. The official Australian Alcohol Guidelines for the general community, developed by the Department of Health, say that women should have no more than 2 standard drinks per day, and men should have no more than Hepatitis C Community News  • December 2006

to treatment when comparing drinkers and non-drinkers, those who drink are significantly less likely to complete the treatment. For example, one study found that up to 48% of those who had been drinking in the previous 12 months failed to finish treatment, compared with only 26% of those who had not been drinking during that time. Unfortunately, this correlation does not explain

just why people did not complete the treatment, and more research needs to be done in this area. If reducing or halting alcohol consumption does help your health and help your chances of finishing treatment for hepatitis C, how can you best manage this? Here are some suggestions provided by the Hepatitis C Council of Queensland. • Avoid binge drinking (consuming hazardous or harmful levels of alcohol in a relatively short period of time), as this places a heavy strain on the liver to detoxify and metabolise the alcohol. • If you are or have been a regular binge-drinker, then consider abstinence as an option, particularly if you feel that you may have an inability to stop drinking after the first drink. • Try not to drink in rounds, always finish a drink before pouring another, and avoid situations where you may feel obliged to or pressured to drink. It’s always better to determine your own drinking pace rather than be locked into that of other people. • Start with a non-alcoholic drink, especially if you are thirsty, or alternate alcoholic drinks with non- or low-alcoholic drinks. This will help reduce the amount of alcohol being processed by your liver over a short period of time, and allows your liver a chance to metabolise the alcohol you already have in your body. • Switch to low-alcohol drinks. • It’s very important that you do not save your weekly ration of drinks to be consumed in the one session, as this can be a dangerous shock to your liver. • If you need more advice or help, contact an alcohol information and support service. Ring Drug & Alcohol Services SA on (08) 8274 3333, or go to www.dassa. sa.gov.au for further information.


A Guide to the HCCSA Website The website of the Hepatitis C Council of South Australia has been set up to be a straightforward, easy-to-use portal to all of our services and to the best hepatitis C information on the net. If you’ve never visited it, or haven’t visited for a while, go to the address below and see what’s there for you.

About the Council: Want to know who the staff and board members are, and about their backgrounds? Want to know about the services we offer? Want to join the council, or become a volunteer? Here’s the place to click. You can also find copies of our annual reports, policies and details of our education programs.

Quick Links: Shortcuts to frequently accessed pages.

Information & Resources: Download fact sheets and pamphlets about numerous facets of hepatitis C. Search our library catalogue (see page 11), or order publications and posters for your workplace or yourself. What’s New?: Upcoming and recent events, developments and announcements. At the moment we’re featuring the excellent digital stories of people living with hepatitis C.

Rural Education: For people outside Adelaide who are living with hepatitis C, click here for information on our rural education services and the Getting It Together program (see page 4).

Hepatitis C Community News: The magazine you are reading now is archived online, with complete issues going back to 1999. Useful Links: Your starting point to the huge number of hepatitis C resources available online. Visit other hepatitis councils, government departments, information libraries, multimedia sites and more.

Hepatitis C Community News December 2006 • 


The Rough Guide to Hep C Info Online The best websites for getting to grips with hepatitis C There’s no shortage of information (and misinformation) on hepatitis C to be found on the internet. A quick Google search brings up 11 million pages! So where do you start? Here are a few of the best starting places, as well as a couple of smaller sites with their own unique approaches.

Australian Hepatitis Council www.hepatitisaustralia.com As the central body representing all of Australia’s hepatitis councils, the Australian Hepatitis Council runs a large and informative website, frequently updated, which includes a large amount of information about hepatitis C. A significant part of its value comes from it being local, as health guidelines, medical treatment and other factors can vary enormously from country to country. You can download a huge selection of posters, pamphlets, booklets and magazines, as well as access other resources provided by the various councils. It also maintains an up-to-date news service, useful for keeping track of the latest developments in the world of hepatitis C.

HCV Advocate www.hcvadvocate.org/index.asp This is probably the best international site for people seeking information about hepatitis C. Particularly notable for its news Hepatitis C Community News 10 • December 2006

service, which is updated almost every day with the latest news on research, treatment and advocacy, it also features an extensive online library full of personal stories, self-management suggestions, downloadable pamphlets and booklets, teaching resources and much more. It’s a site that nobody interested in hepatitis C should ignore.

HepNet www.hepnet.com In their own words: “Interactively learning about hepatitis is a big part of what makes HepNet so unique. If you are interested in learning more about the liver itself and it’s involvement in viral hepatitis we have ‘The Liver in Health and Disease’, which is an easy to follow learning module. Eight different slide presentations will update you on almost everything you need to know about hepatitis. Six online quizzes can challenge even the very well informed about hepatitis, including risk factors and recent advances. By checking HepNet often, you can ensure that you are always up to date with current hepatitis related issues. Looking for a way to stay in touch with what’s up in hepatitis? Subscribe to HepWATCH, it’s easy and it’s free!” This is a fine resource, based in Canada, though not as frequently updated as they suggest.

What is this Hep C Thing? www.hepc.com.au/hepc_activity/ index.htm This is a nifty site designed to teach young people about hepatitis C. An animated cartoon about three kids looking for a cheap tattooist is followed by an attractively designed quiz and then further interactive possibilities. Not a site you’d go back to again and again for more information, but then it’s not designed for that. This is the place to start for kids who need to know about hepatitis C but who would never go to a book for that information.

Hep C Transmission www.hepctransmission.com Another attractive well-designed site, subtitled ‘Health information by young people for young people’. The main drawcard here are two clever films created by Vietnamese-Australian teenagers giving basic information about hepatitis C and blood safety. This is backed up with some sensible


Council Library Online basic advice on the site, and there are a number of links that lead you on to other sites; another excellent starting point, rather than an indepth resource.

The Hepatitis C Council of SA has a library with hundreds of books, magazines, research papers, CDs, DVDs and videos relevant to people dealing with hepatitis C. Free broadband internet access is available in the library to members of the community during office hours. HIV, Hepatitis & STI Education and Resource Centre www.accessinfo.org.au A Victorian site with some good basic information, although its broader focus on a range of diseases means that there are better places to go if you’re looking for specific hepatitis C information. It’s a good source of a number of informative fact sheets, though at the time of writing the home page had several dead links.

Multicultural HIV/AIDS & Hepatitis C Information www.multiculturalhivhepc.net.au Twenty-one different languages, from Bosnian to Tagalog, are catered for at this excellent website. Comprehensive information about hepatitis C natural history, transmission, treatment and much more can be downloaded in PDF form for each language.

The library catalogue is also now available online, and was launched during Hepatitis C Awareness Week (see page 2). It contains all of the items in our collection. If you are interested in an item please email us, or use the enquiry form on the webpage. Go to hepccouncilsa.asn.au/websearch.html to begin!

Q&A I have recently learned that I have hepatitis C, but contracted it many years ago. Does this mean that, if I do start to show symptoms, I’ll get very sick very fast, or will it be a slow process? Hepatitis C is a slowly progressing but highly variable disease. This means that although overall hepatitis C progresses very slowly, individuals will progress at different rates: if 100 people acquire hepatitis C on the same day, after 20 years approximately 45% may never

develop serious liver damage, 47% may develop mild to moderate damage, 7% may develop cirrhosis and 1% may develop liver failure or liver cancer. Symptoms usually take 1015 years to develop (if at all). Some people never have symptoms of hepatitis C. Symptoms correlate poorly with the degree of liver damage, so people with minimal liver damage may experience symptoms while people with moderate damage can have no symptoms.

Metro 8362 8443 Country 1800 021 133 Hepatitis C Community News December 2006 • 11


Online Forum Extravaganza Australian Hepatitis C Support A visit to www.hepcaustralia.com. au/forums/ will take you to a new and interesting website for people living with hepatitis C. Organised by individuals rather than under the auspices of a hepatitis council or government department, it is the Australian Hepatitis C Support (AHCS) Forum. With more than 100 registered users and over 500 articles, the forum is already a thriving concern, with numerous discussions about the nature of hepatitis C, its diagnosis and symptoms, its treatment, dealing with lapses, and dozens of other topics. Though based in Australia (and run from Adelaide), it is open to international users. Importantly, however, the administrators are ensuring that everything contained in the forum is relevant and appropriate for Australian readers. The Hepatitis C Community News talked to Linda McInnes, one of the administrators and creators of the AHCS. What was the main reason for starting the forum? My son Shane designed and created the forum. He noticed me on the computer in forums located in the USA, as I was trying to find comfort and answers. He noticed how much research

and knowledge I was obtaining, and I often questioned why there wasn’t an Australian hepatitis C forum. We felt that there was a need for a forum based here in South Australia, which would also help me relate to other people with Hepatitis C in my own community. Somewhere locally or nationally, where all people can share information to help each other cope whilst living with the Hep C virus. A few months after creating AHCS and searching the Hepatitis C Council websites I found the NSW Hep C Australasia forum, which is also a fantastic site. Hopefully the AHCS forum will bring not only South Australians together, but also bring people from all over Australia together to find comfort and support, as well as work together in the fight against hepatitis C. What do you think the AHCS forum does that other forums don’t? The AHCS forum is close to home. In other words, it’s local, national and it’s made FOR Australians, by Australians. Our forums are free to join, our information is free to find, and we do not charge people money for important information that they may have to pay for elsewhere. Most importantly, though, the information we provide has been sourced from all over the world, we’ve ensured as much of it is as correct as possible as per Australian statistics. Our forums have been designed

Hepatitis C Community News 12 • December 2006

using the latest internet language, and are secure and available to anyone. We can email each other and send private messages to each other, whereas some medical and hepatitis C forums won’t allow that kind of contact. Our forums are run

by people who have an affiliation to hepatitis C, and we feel very strongly about how it affects the people in our local community and our nation overall. How do you hope it will develop over time? The AHCS outlook is very bright, and eventually it will be a place where you can find all sorts of information relating to the virus. The latest treatments, cures and health-related news from around the world will be available at the click of a button. A place where others can post their own stories and any links they have to share with everyone. Overall, it will be an information centre, complete with various resources, communication and support. We are also looking at implementing an “Online Voice Communication” room so people can talk to each other using a microphone that’s attached to their computer. It will be free for everyone to use as well, will help people with social interaction problems and assist those that can’t type very well. Has working on the forum helped you as someone living with hep C? I had previously been living like a


hermit, suffering from depression, anxiety, chronic fatigue, nausea and various other problems. I didn’t go out anywhere and I was severely depressed because I couldn’t just talk to anyone (even

those close to me) freely about having hepatitis C because of the stigma attached to it. The forum helped me communicate with others and realise that I am not alone. Everyone that has this virus is going through the same things as I am. Researching material to put in the forum has helped me to understand more about the virus and made me feel confident enough to do something to help other people and bring us together. I have also found my social issues have decreased, which is fantastic. I am slowly (but surely!) finding it easier to interact socially again!

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 8362 8443 or 1800 021 133 (SA regional callers)   *We approach GPs for permission before putting their names on our list; and we do not reveal who nominated them.

Hep C Australasia Hep C Australasia is a communitybased internet discussion forum which aims to empower people affected by hepatitis C and provides a place to share ideas, opinions, support, tears and laughter. The community aims to provide a welcoming, nurturing and respectful place for people to share their stories and thoughts. It is an Australian-based service which welcomes overseas members, but whose primary focus is on people in Australia and New Zealand who are affected by hepatitis C. While it is supported by the Hepatitis C Council of NSW, the community is self-monitoring and regulating, and members do not need to be a member of the Hepatitis C Council in their State or Territory to join. You can find the forum at http://hepatitisc. communityzero.com/ Here are some edited messages from the forum, which give a flavour of the informality and detail of the discussions. Names and identifying details have been deleted.

I experienced hair loss as well. I think it is a case of different strokes for different folks. It was easy for me as I just had a No 2 and it looked okay. Did you get a haircut or anything? I am just not sure where to go with this. If my VL is good I will have another 33 weeks of this. Did it stop falling out only months after Tx? Gosh, that means I could lose it all!! I saw my Doc 2day & i’m convinced i know more about this than him. He will have to pay me soon! I asked for a letter to my employer stating that i have a medical condition & am undergoing treatment which can have severe side effects & lead to cognitive impairment & memory loss etc. He said it doesn’t affect memory! I told him i have read a lot of real life experiences & lots of us suffer from it. He said it causes other distractions & because of that you can’t remember sometimes, then stopped dead when he realised what he said. I said whats the Freaking difference!!!! I need a new DR!

I mentioned you not being happy with your doc and she seemed to think it would be Ok for you to change. Although I didn’t mention that you were currently undergoig Tx, only that you weren’t too happy. I can relate to your problem with the doctor. Although mine is knowledgable he was a bit of a smart-@rse, I suppose it didn’t help that he had a student there as well. I too feel like a guinea pig. He tried to scare me into a biopsy which I don’t want, I understand the reasons why he wants me to have it, but I know what I can cope with mentally at the moment. Hepatitis C Community News December 2006 • 13


Weights & Moods Weightlifting as a Treatment for Depression In the last edition of this magazine I wrote about how meditation is being used to prevent relapse in people who have recovered from depression; specifically, in its use as a way of controlling ruminative thinking. In this issue I want to look at weightlifting (also referred to as strength or progressive resistance training) as both a treatment and a maintenance therapy for depression. Although there have been numerous studies in the past

which have looked at the effects of physical exercise on mood, most of these have focused on aerobic exercise ( such as running, jogging, or cycling), most have involved young people with depression, and the results of these, while generally showing Hepatitis C Community News 14 • December 2006

some benefit, have not been uniform. There have only been two studies which have looked at the effects on mood of lifting heavy weights. Both involved elderly depressed patients, both showed a significant improvement in mood, and both were conducted by the same author (Singh, 2001; Singh, 2005). It is the most recent of these two studies that I wish to describe. I first heard about this study when its author was interviewed by Norman Swan on the ‘Health Report’, on Radio National, on 13 December, 2004. A transcript is available at www.abc.net.au/ rn/talks/8.30/helthrpt/stories/ s1261215.htm. The author, who is an Australian, conducted the study at the Royal Prince Alfred Hospital in Sydney. She took sixty over-60-year-olds who were suffering from a depressive episode and randomly assigned them to one of three groups. The first group (the control group) were assigned to normal GP care, the second group to lifting light weights without progression to heavier weights, and the third group to lifting heavy weights with progression to heavier weights. No-one in either of the two weightlifting groups received any other treatment for their depression for the 2-month period in which the study was conducted (Singh, 2005). The results were intriguing. For the first group (normal GP care), there was a 30% recovery rate (a placebo effect). For the second group (light weightlifting), there was also a 30% recovery

rate (again, the placebo effect). For the third group (heavy weightlifting), there was a 60% recovery rate. This result for the heavy weightlifting group is quite a remarkable outcome and is at least as good, if not better, than the outcomes of either cognitive/behavioural therapy or antidepressants, which are the two most common, currently available, treatments for depression. The study also found significant improvements for the heavy weightlifting group in sleep quality and self-efficacy, as well as evidence of a dose response—in other words, the more effort you put in, the more you improve. There were no adverse events recorded for any of the participants throughout the duration of the study (Singh, 2005). How does it work? That isn’t clear, and the author doesn’t attempt to explain the mechanisms of weightlifting on mood, except to say that it is probably biological and most likely results from changes to hormones, sympathetic and parasympathetic nervous system activity, and neurotransmitter levels. So what exactly was involved? The author used the general principles of strength training to devise the programme for the heavy weightlifting group. The 20 participants were required to attend a gym for a 45-minute session three times a week for two months. The strength training programme involved participants lifting weights for each of the large muscle groups on machines set at 80% of one repetition maximum (1RM being the maximum load that can be lifted fully one time only) on each machine. They completed three sets of eight repetitions on each machine. At each session the load was slightly


increased, and at the end of each month a new baseline was set by retesting the 1RM for each major muscle group. For comparison, the light lifting group used exactly the same format except the 1RM was only 20% and they were not increased over time (Singh, 2005). Because this study is so recent there are unfortunately no readily available courses or programmes based on it. Also, because the study was very small, it will need to be repeated many times before its benefits can be validated. I was recently informed that Adelaide University is currently running a similar strength training study, but have no details as yet. If the study is validated it could be a few years before it is offered as a treatment for depression. However, because weightlifting is a relatively safe and easily accessible activity, and because the benefits are almost immediate, anyone who is committed to getting rid of their depression can, without too much trouble, test it for themselves. If you would like to try this I would strongly advise that you first of all consult your doctor and explain what you want to do, why you want to do it, and make sure there are no medical reasons why you should not lift heavy weights. If you are on antidepressants, you should still feel the benefit of lifting weights if it is working for you, and perhaps you may eventually be able to reduce or even cease them.

It should be possible from the information above for anyone who understands the fundamental concepts of strength training, and who is familiar with gym equipment, to devise their own programme. For someone who has never been in a gym since they left school, you will need a little help. If you are not familiar with lifting weights and want to do this, the easiest way is to join a gym and pay a qualified instructor to write you a programme based on the above. The cheapest gym membership in Adelaide is around $260 per annum (it’s possible to get an even cheaper beginner’s special at around $160). It will cost you around $25 and upwards to have a fitness assessment and a programme written for you, and around the same price for each hour of private instruction. Everything you do will be on machines, which are much safer than free weights. If you don’t have much money, there are always books. Of the many which I reviewed I would recommend The Complete Idiot’s Guide to Weightlifting, which will give you all the information you need about gyms, equipment, the theory of strength training, safety and lots of other important information. I would also recommend Frederic Delavier’s Strength Training Anatomy, which has more than 400 illustrations showing which muscles are being used with any given exercise. Copies of both these books are available at Adelaide City Lending Library, or if you want to buy them they are around $35 each.

If going to a gym seems like anathema to you, it’s possible to buy a home gym for under $400, or a second-hand one for even less. There are many good reasons for going to a gym rather than lifting weights on your own, but after safety the most important is probably motivation. A word of warning: if you suffer chronic nausea you will have to be very careful, as the strain of lifting may make it worse. I would suggest always commencing weightlifting two hours after your last meal and drinking lots of water while you exercise, which you should do as a matter of course anyway. If that doesn’t do the trick you may have to resort to antiemetics on the days you train, if you are keen enough, and if your doctor is happy to prescribe them. I have written both these articles relating to depression (see last issue) with the theme of this year’s Hepatitis C Awareness Week (selfmanagement) in mind. Whether you try weightlifting, meditation, or even both, I wish you every success. Leif Blackstream References: Delavier F., Strength Anatomy Training, Paris: Editions Vigot, 1998. Johnson-Cane, D. et al, The Complete Idiot’s Guide to Weight Training, NY: Alpha, 2002. Singh, N. et al, ‘The efficacy of exercise as a long-term antidepressant in elderly subjects: a randomised trial.’ J Gerentol Med Sci. 2001; 56A:M497-504. Singh, N. et al, ‘A randomised controlled trial of high- versus low-intensity weight training versus general practitioner care for clinical depression in older adults.’ J Gerentol Med Sci. 2005; 60(6):768-76. Hepatitis C Community News December 2006 • 15


Finding the Joy There is pleasure to be found, even on dark days. Recently I have found a recurring theme in the counselling room. When life becomes a challenge, or we face pain, hurt, anger and frustration, it seems to encompass us. Fair enough! Some problems keep us stuck for a while. However, it raises the question, where is the joy when the days seem endless in pain? One day I was reading a delightful book by an author named Sark. In her book Eat Mangoes Naked (a strangely attractive title) she says, “We can dive deeply into our challenges, and still chortle with glee.” This means that, while pain and fear invade our lives, we can still allow joy to accompany us. We can give ourselves permission to have pleasurable times even through the darkest days. So how do we achieve this? Well, firstly, you must know in your heart that you deserve pleasure. Make a promise to yourself that you will respect and love yourself by experiencing times of joy. If you need to, seek out a good counsellor to help you. You may also want to choose a friend who will support your new thinking. Spontaneity can be your friend when seeking joy. Here are some spontaneous moments I have enjoyed in my life that might give you some ideas about what is possible. • I was heading down to the beach, when I spotted a fin off the shore. I realised there was a pod of dolphins frolicking in the shallow water. I sat down Hepatitis C Community News 16 • December 2006

with my dogs and wondered at the intelligence, grace and beauty of the dolphins. I thought about the freedom of being in the sea and what it would be like to be a dolphin, playing in the white foaming waves at the bow of a boat. I experienced a sense of oneness and connectedness with the animals. • When I was in my twenties, I went to the city with a couple of friends for a night on the town. I felt a bit lonely, really. I wasn’t enjoying the nightclub scene or the local pub. Out of the blue, I met some old friends from my days at university. We went to an outside restaurant. It was a balmy warm summer night. We laughed, talked about old times, and watched people walk by. It was a joyous time. • My girlfriend came around one night in tears. Her relationship with a very dear person in her life was over. We cried together, and afterwards we put on a great dance record (before the days of CDs!). We boogied around the lounge room, closely followed by my (then) three-year-old daughter. We laughed and told each other

how grateful we were to have our friendship. If a spontaneous moment eludes you, then plan for a happy time. Set aside time to do things dear to your heart. If nature is important to you, take a walk in the park, and notice the colours in the trees or the clouds the sky. Invite a friend over and rug yourselves up in the moonlight and watch the stars. If you like spending time alone, find an inspirational book, or some great music, curl up on a sofa and enjoy. Remember there are no rules for fun. Simply let joy flow into your life. May you find peace and love for yourself, and know that you are worthy of happiness in hard times. Toni Catford Professional Counsellor Printed with permission from the Eating Disorders Association of South Australia. EDAsa can be contacted on 8332 3466 or at www.edasa. org.au.

Websites to visit: moodgym.anu.edu.au www.beyondblue.org.au


The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Freecall: Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1800 021 133 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au

STAFF Acting Manager: Kerry Paterson Senior Administration Officer: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Steve Lyn Will Mark Judy Anne Debra Janette Annette Michele Wendy Education Coordinator/Rural Education: Leslie Wightman Metropolitan Educator: Nicci Parkin Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Claire Maggie Thuy Lyn Phil Publications Officer: James Morrison Librarian: Joy Sims

BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood Treasurer: Carol Holly Senior Staff Representative: Kerry Paterson Ordinary Members: Leslie Dunbar Enaam Oudih Anthea Krieg Nick Taylor

Unless otherwise noted, articles are written by the editor. Probably. Well, not the editorial, but the rest.

Editorial

Useful Contacts & Community Links

Welcome to the spring edition of Hepatitis C Community News. Featured in this issue is a survey of online resources dealing with hepatitis C. Reliable and up-to-date information is essential for anyone who has been diagnosed with hepatitis C and is seeking to manage their health. We take a look at several useful sites on the internet, including discussion forums, and we show you around the Hepatitis C Council’s own upgraded website.

Hepatitis C Council of SA Provides information, education, support to the hepatitis C community and those at risk of infection. 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.

Staying healthy with hepatitis C was an important message of the recent Hepatitis C Awareness Week. In this issue you’ll find information on oral health and alcohol intake for people living with hepatitis C, articles on some different ways of countering depression, and our regular Q&A section. There’s also news about the Getting It Together project, which is working to give a voice to people affected by hepatitis C in rural and remote areas. We also feature a cartoon story that comes out of the GIT project. It describes the consequences of a person being inadequately advised about the results of a hepatitis C test. We hope you enjoy reading Hepatitis C Community News. And please visit the Council’s web-site at www.hepccouncilsa.asn.au to access information on hepatitis C, search our library catalogue, find out what’s on, or link to other sites. You can also download digital stories told by people living with hepatitis C. A call for help: The title of this magazine is straightforward but dull. Sure, it says what we are, but it’s not exactly thrilling. Do you have a better name? Let us know at editor@hepccouncilsa.asn.au.

Contents Cover: A fortuitous meeting during Awareness Week - see page 2 Online Focus 9 A Guide to the HCCSA Website 10 The Rough Guide to Hep C Info Online 11 HCCSA Library Online 12 Online Forums: The AHCS and Hep C Australasia Depression Information 14 Weightlifting & Depression 16 Finding the Joy Plus... 1 2 4 5 7 8

2005-06 in Review Hepatitis C Awareness Week in Pictures GIT ‘Toons Helen’s Story Hepatitis C & Oral Health Hepatitis C & Alcohol

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. Are you still reading this? Why are you still reading this?

Call the Council’s Hep C Info and Support Line for information on (08) 8362 8443 or, for rural callers, 1800 02 11 33 (freecall). 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 culturally and linguistically diverse backgrounds. (08) 8223 4566 Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander people. (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 169 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) 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 recieve 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 men, 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 the choice of two meeting rooms, both of which are suitable for workshops, presentations, formal and informal meetings. The ground floor has disabled access and can accommodate up to 20 people. Upstairs is a spacious area suitable for up to 30 participants.

Meeting Room Hire at the

Both rooms have modern, self-contained kitchen and bathroom facilities. The upstairs room has 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 rooms 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


Become a

member

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.

Your details Member type (tick one) Title

 New

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Name

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Membership type (tick one)  FREE  $22.00*  $55.00*

Individual Membership Healthcare Professional Organisation * All prices include GST.

Donations Would you like to make a donation?

 Yes

If yes, how much?*

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*GST does not apply. Donations over $2 are tax deductable.

Total costs Membership fee plus donations

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The Hepatitis C Council of South Australia Inc. is aware of the need for privacy and endeavours to comply at all times with the Privacy Act 2001. As such, any information provided by you is accessed only by authorised personnel and will remain strictly confidential. To change or access any personal information we hold about you, please write to the Manager at the above address. ABN: 38 030 552 547 Tax invoice – please retain a copy for your records.

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Community News #34 • December 2006

Awareness Week in Review • Online Resources


#34 Hep C Community News