HEP C COMMUNITY NEWS Summer 02
Issue 21
Hepatitis C Awareness Week 2002 As It Happened 4th - 10th November It all began with a Steering Committee Planning for Awareness Week 2002 began formally in July with a brainstorming session held with representatives from a variety of relevant organizations. Following on from this meeting a steering committee was formed with the aim of further developing ideas and planning events. Thank you to the individuals and organizations who contributed to Awareness Week planning. Focus for 2002 The steering committee decided that the focus for Awareness Week this year should be to promote hep C prevention messages particularly for young people. In the past our Awareness Weeks have focussed on shedding misinformation in the community with the aim of reducing stigma and discrimination. Although this year we wanted to achieve this goal, we also wanted to target a slightly different audience. Slogan Unfortunately the Hepatitis C Council of SA cannot take credit for the clever, catchy slogan used for Awareness Week this year. “This is Bloody Serious!” was the slogan originally used by the Hepatitis C Council of Victoria for their Awareness Week in March this year. The steering committee decided that as Victoria had spent a lot of time and effort developing an effective slogan, that we should not try to “reinvent the wheel” and just use an idea that was already proven to be quite successful. Generally the slogan has been very well received with individuals and organizations commenting that it was an excellent, clever slogan. We did receive one piece of feedback which stated that the swearing was offensive.
Our gang of helpers on Launch day Full coverage continues page 4
Hepatitis C Community News
Contents Editor’s Note Awareness Week
4 The Parade Norwood SA. 5067 Ph. (08) 8362 8443 SA Regional Callers 1800 021133 Non-waged membership -— $5.50 Waged membership -——– $16.50 Organisational membership — $55 (GST inclusive)
3 4—10
The Retractable Syringe
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New Resources
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Library Resources
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Inspirations & Alternatives
14—15
Letter’s to the Editor
16—18
Updates
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Resource List
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You can request a zero-cost membership Donations do not attract GST
Postal Address Hep C Community News PO Box 782 Kent Town SA 5071 PH. (08) 8362 8443 Fax. (08) 8362 8559 Email: hepcsa@senet.com.au Web site: www.hepccouncilsa.asn.au
We welcome contributions from Council members and the general public. Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of S.A. Inc. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist.
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Hepatitis C Community News
Issue 21
Editors
H
ello and welcome to the Hep C Community
Newsletter. My name is Stephen Bobyk and I have recently been appointed to the position of editor for this publication. I am looking forward to the ongoing experience and challenges that this role has to offer. My relationship with this Council so far has been a personal one spanning over several years now, I’m eternally grateful for the information and support that has been offered to me in this time. It’s a nice feeling to now have the opportunity to be able to give something in return. My desire, through this publication, would be to encourage others to take advantage of the resources available and not have any misgivings or fears about doing so. All information available from this Council, whether it be in the form of Info and Support groups held here on the premises, or support via our telephone information service, is always handled in a non-discriminative, non-j ud geme ntal a nd completely confidential manner. I know that’s easy to say, however in this case it’s true because most of us here have seen what can happen to a person’s life when others around them begin to behave in a discriminative manner. The extent of this behaviour in my opinion is directly related to the persons ignorance surrounding the Hep C virus. The word “ignorant” simply means “uninformed.” How can anyone have an informed opinion without experience or the relevant information? Sadly I can remember all too clearly the time when the whole world seemed to be in awe of Princess Diana when she touched that man with HIV on the arm. Everyone appeared horrified! It was common-place for people to
Note
be talking about it as though she were taking her life into her hands by doing so. I couldn’t believe that event made global headline news! Sadly, to me that displayed the height of ignorance on a massive scale. So it is for these reasons and more that I would encourage everyone to become more learned with regard to the issues surrounding their opinions before setting them in stone. That’s not to say that I feel everyone needs to know everything about everything, but with regard to HCV, the basics such as the means of transmission, possible symptoms, certain aspects regarding treatment etc. are all pertinent issues which concern all of us, not just those infected. At the Council we are well aware of the far reaching implications and concerns of those who find themselves in a position whereby they are being affected by this virus, whether this is a de-facto type of effect, or a more direct one, the concerns are just as real and painful. This is why we encourage everyone to utilise our information services. Most people find that once they are armed with the facts they are able to cope with the situation much more painlessly. Other helpful information is the knowing that you’re not alone. There are others out there in similar situations, for this reason I would like to encourage all of you to share your experiences and concerns with us all via our Letters to The Editor section in this newsletter. It is surprising how encouraging it can be to someone newly diagnosed to see how others in similar circumstances are dealing with their concerns. Best Wishes to you all. Steve
Hepatitis C Community News
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Monday’s Launch
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At The Amphitheatre
n the spirit of hepatitis C prevention and young people, the launch for this year’s Awareness Week took on a different feel. The launch was targeted towards young people and aimed to create a youth-friendly atmosphere. The launch, held at the Festival Centre Amphitheatre, kicked off with an awesome martial arts display from local young performers from Soul Capoeira Martial Arts. The vigour and skill of the young performers brought an incredible energy to the day. Also bringing a youthful, vibrant energy was George Valiotis (Our Volunteer Coordinator) who acted as MC. Rod Givney, Acting Director of the Communicable Disease Branch for the Department of Human SerSoul Capoeira Mr R Givney vices performed the official duties of launching the event. Prior to declaring the Officially Opening The Week week officially open, Mr Givney delivered a well informed speech covering the range of difficulties facing those affected by the virus. Topics ranged from the immediate medical issues of those infected, to the less obvious, but no less devastating effect on all those surrounding, such as the family unit and friendship circles.
Our own MC at work
Soul Capoeira
Simon, a volunteer at the Council and a positive speaker spoke of his experiences with hep C from the perspective of a young person in an interview with Triple J’s Adelaide morning show reporter, John Thompson-Mills. Thank you Simon for sharing your story. The day was concluded with a great set music by DJ Josh played while people mingled and gathered information from different organisations who had displays on the day.
Triple J’s John Thompson-Mills (left) With Positive Speaker Simon (right)
The launch, as well as other Awareness Week activities was promoted to many different organisations. The launch was also promoted to secondary schools as a means to learn about hep C prevention and to collect information for their school.
DJ Josh
Crowd Gathering on the Day
There were approximately 70 people in attendance at the launch including representatives from 2 different schools. We were fairly happy with these numbers but a bit disappointed that not more schools did not choose to use the event to access information and resources.
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Hepatitis C Community News
Issue 21
Continues Elsewhere around the State “You and your Health” for Multicultural People
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n Monday 4th November, Enaam Oudih, of the PEACE program, (a multicultural program run by Relationships Australia), and the Hepatitis C Council Rural Education Officer, Leslie Wightman, presented a half day forum titled ‘You And Your Health' for the Whyalla Multicultural Communities’ Council. Teresa Nowak, the Community Settlement Worker with the Whyalla Multicultural Centre, contacted community centre members and provided local co-ordination of the event. This forum focused on general liver health, hepatitis A, B and particularly C including strategies for promoting optimum health.
Adelaide Train Station Information Stall
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ne of the Awareness Week activities targeting the general community was an information stall at the Adelaide Train Station.
The stall enabled a large number of commuters to find out about the Hep C Council and to collect information or ask questions. The stall was up and running at an early 7am targeting travellers heading to work. Deborah Warneke, Metro- Educator and Volunteers who facilitated the stall said that the general reaction of people passing by was curiosity. All the people who approached the stall did not know that the Hep C Council existed.
This very interactive forum also enabled participants to explore cultural practises in relation to risk factors for hepatitis A, B and C. Fifteen community leaders from a variety of cultural backgrounds attended the forum. Immediate and subsequent forum feedback has been very positive, participants indicated they found the forum both enjoyable and educational. Thank you to Enaam and Teresa for their leadership and enthusiasm in the creation of this forum.
Train Station Stall
Vietnamese Hep C Prevention Poster Launch Liz O’Keefe attended this event. About 50 people attended on the evening. Minister Lee Stevens launched the poster. The minister was keen to support this communities efforts in harm reduction and education regarding HCV. A striking bold coloured poster was produced in both Vietnamese and English. The poster uses images of people from all age groups, and will help to break down stereotyping the affected community. The Vietnamese community work tirelessly to prevent infections in their Community, and for this they were highly commended by the Minister and we also congratulate them.
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Tuesday’s Events Info-Jection A team of volunteers headed by George Valiotis (Volunteer Coordinator) ventured to Clean Needle Program Outlets around Adelaide armed with Hep C information packs. Covering all bases: from the Shopfront Salisbury, down to The Parks, Port Adelaide, Noarlunga and SAVIVE. The team
distributed information and also set up displays ensuring that everyone knew that it was Hep C Awareness Week and that it is bloody serious! Information packs were also sent out to other Clean Needle outlets around the state. Thanks to DASC for distributing these packs.
“Let’s get bloody serious!” One of the main activities for Awareness Week this year was “Let’s get bloody serious!-Confronting the epidemic”. The aim of this evening was to educate health professionals about the big picture of Hepatitis C Prevention looking at epidemiology and what we are doing on a state and national level to address the epidemic. The speakers for the evening were the following: Introduction and Welcome Sharon Drage (Chairperson, Hepatitis C Council of SA)
Rod Givney (Acting Director, Communicable Disease Branch Department of Human Services)
The Big Picture Emma Miller (Senior Project Officer, HIV, Hepatitis C and Related Programs Unit and Epidemiologist, Communicable Diseases Control Branch, Dept. of Human Services)
Dr Alex Wodak (Director of the Alcohol and Drug Service, St. Vincent’s Hospital, Sydney)
The Local Picture (Interviews by Iain Henderson, COPE) Catherine Bunting (Clinical Nurse Consultant, Viral Hepatitis Centre, Royal Adelaide Hospital)
Leslie Dunbar (Community Worker/Youth Advocate, Streetlink Youth Health Service)
Dr William Donohue (Project Manager—C Clearly Program, a project of The Health in Human Diversity Unit Department of General Practice, Adelaide University)
The Response (Interviews by Rosanna Mangiarelli, ABC) Dr. Ingrid Van Beek (Medical Director of the Sydney Medically Supervised Injecting Centre)
Associate Professor Robert Ali (Director Clinical Policy and Research, Drug and Alcohol Services Council)
The evening was concluded with a panel discussion with questions from the audience. There were approximately 135 people in attendance on the night including GPs, health professionals working in the sector, university lecturers as well as the hepatitis C affected community. We had planned to include key people from SAVIVE and AIVL but unfortunately they were not available due to prior commitments.
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Hepatitis C Community News
Issue 21
The Week Continues Wednesday Nungas and Hep C: Everybody’s Business
Flinders Uni Information Stall An information stall and BBQ coordinated by a team of Health Promotion students from Flinders University was held at different locations around Flinders Uni. The stalls were a huge success. There were over 550 Hep C postcards (containing Hep C info) handed out and many questions answered. Both students and lecturers passed by the stall, and there seemed to be a lot of confusion and misinformation from people particularly around the difference between types of hepatitis. Some of the comments from people included: “I’ve just been teaching my students about safe sex practices and HIV” “I don’t need any information because I’m not from that generation” “I’ve already been immunised against hep C” “I won’t kiss any foreigners” There were many discussions with people to help address the misinformation and provide people with the correct facts.
In conjunction with the weekly Nunga lunch at Parkes Community Centre, a positive speaker spoke about her experiences with Hep C and gave people information about the virus. The information was well received and it was reported that people approached the positive speaker after the event.
Adelaide Information Evening A regular Information Evening/support session was held during the week with the topic “Diagnosis: Sharing Experiences”. Guests for the evening were Mosaic Counselling Service.
Thursday Celebrating Community Achievements Enaam from the PEACE Project must be commended for her achievements, this was truly an amazing outcome. On the night about 15 people graduated as peer educators. Enaam managed to bring people together from a broad range of nationalities/cultures and trained them to take health messages particularly hepatitis C information back to their communities. It is no easy task to overcome sensitive cultural boundaries and discuss issues like sex and drugs. However, PEACE did this and from the way the graduates applauded and encouraged each other during the presentations it was obvious that they had built strong alliances and had a lot of fun on the way. Congratulations to Enaam and Lola, you are Inspirational. Enaam also provided a list of those graduates so that agencies can utilise their skills when engaging with people from other cultures.
Poping into prisons The Partners of Prisoners Program – POP (OARS SA) report that they had good outcomes at the Adelaide Women’s Prison and the Adelaide Pre-Release Centre. POP organised 80 information packs filled with hep C and drug information for the women. Staff put a pack under every inmates door early that morning and POP also distributed 60 information packs during a walk and talk session at the Pre-Release Centre. The Social Worker organised for the video ‘Traces Of Blood’ to be played through a link up which can be accessed in all the cottages at the Centre. Many thanks to POP, Prison Managers and staff for facilitating this event.
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Friday Co-infection Workshop and Lunch A workshop on HIV/Hep C Co-infection (with a positive speaker) was held in conjunction with the weekly lunch provided by the Positive Living Centre. Deborah Warneke, Metro Educator facilitated the event introducing Dr. William Donohue (C-Clearly) as the guest speaker at the workshop. The small group of participants were able to address their individual concerns and needs.
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Roving The Riverland
n partnership with the Riverland Regional Health Services Inc. and Mosaic Counselling, the Hepatitis C Council’s Rural Education Officer, Leslie Wightman set out to raise general community awareness of hepatitis C and to promote telephone information contact details for people seeking further information and support. During Hepatitis C Awareness week, information messages were directed to the Riverland community via WIN Television news and the popular Lifestyle program -‘At Home’ (aired four times during Awareness Week). Leslie Wightman of the Hepatitis C Council and Anne Bourne from Mosaic Counselling (Relationships Australia) were interviewed by ABC Radio morning program presenter, Susie Hamilton.
Information stalls were also displayed at shopping centres at Berri and Renmark. Bill Gaston (also of Mosaic Counselling) and Anne Bourne met with Riverland Relationships Australia Counsellor, Paul Campbell to explore possibilities for increasing access to counselling services for people with, and affected by hepatitis C living in the Riverland region. Thanks to Julie Fieke and Jenny Boyd of the Riverland Regional Health Service and to Bill Gaston and Anne Bourne for participating in Roving in the Riverland
Youth Workshop - Awareness Week 9th - 10th November
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ttended by over 20 participants, a great time was had by all! Second Story city centre was the place of the ‘gathering.’ A ‘gathering’ of very special young people, artists, emerging artists and health professionals. The vehicle of presentation? Dance, drama and music! A weekend where young people could voice their concerns and engage in honest exchange about their lives, their values and their perceptions of how their peers could be accessed to learn about Hepatitis C and harm minimization. A weekend where indigenous and non-indigenous youth and workers utilised their creative skills and cultural icons to produce works of immense power and sensitivity. The Hepatitis C Council will be applying for funding in 2003 to produce a major educational tool of forum
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theatre for young people. It is anticipated that this form of education will be a vehicle whereby we can access young people deemed at greatest risk of contracting Hepatitis C. If any of our members would like to keep informed of our progress or would like to be a part of the process please don’t hesitate to contact Jeanette Dal Santo (Metro Educator) at the Council.
Hepatitis C Community News
Issue 21
Throughout The Week This is Bloody Bananas!
Media
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rganised in collaboration with the Department for Correctional Services, people in prisons throughout SA received bananas with stickers containing information about hep C. The objective of this project was to educate prisoners about hep C in a fun and unusual way as there are not generally bananas in prisons.
Royal Adelaide Hospital Information Stall and Television info Throughout Awareness Week an information stall was set up in the busy foyer of the Royal Adelaide Hospital. The stall was viewed by many hundreds of people during the week with information postcards handed out to passers by. People viewing the stall included hospital staff, patients and members of the general public. The stall was staffed by Catherine Bunting and Fiona Bellizzi from the RAH as well as staff and volunteers from the Hep C Council. Throughout the week we received many questions and comments from people from all walks of life. Perhaps some of the most interesting comments came from health professionals who, when we approached them offering information stated that they “know all about Hep C” or “I’m a nurse, I don’t need to know anything about that”. It makes us realize that we still have a lot of work to do to educate health professionals. The internal television system of the Royal Adelaide Hospital also helped to share information about hep C. During the week information and contact numbers scrolled across patient’s TV screens informing and educating people in the hospital. A big thank you must go to Catherine Bunting, Clinical Nurse Consultant of the Viral Hepatitis Centre at the Royal Adelaide Hospital for all her effort in organising the Awareness Week activities at the RAH.
Information Display Packs
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t seems that the media do not want anything to do with Hep C related stories if our experience from this year’s Awareness Week is anything to go by. Despite many press releases and follow up calls to outlets, very minimal media resulted. However it is evident that what media coverage we did receive was very useful in getting information about hep C and the Hep C Council to the public. One of the most responsive media outlets was Fresh FM (a community based radio station). The station promoted Awareness Week by offering to record and play a series of community service announcements (spoken by a local DJ, DJ Josh) as well as an interview with Leslie Wightman, Rural Educator. Leslie was also involved in an interview on a health section of a Whyalla radio station and Liz O’Keefe (Acting Coordinator) spoke on ABC radio. Riverland TV station WIN and ABC radio also provided media during the week. The Hep C Council also paid for 2 different advertisements promoting information about hep C. These were a quarter page ad in all Messenger newspapers and a small ad in the “health” section of the Sunday Mail. Following these advertisements there was an increase in calls with people citing “the ad in the paper” as how they heard about us.
Information packs containing a selection of information about hep C and Awareness Week were sent to Community Health Centres and Services around the state to display throughout communities.
Hepatitis C Community News
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Wrapping it Up Thank Yous
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would like to take this opportunity to thank the staff and volunteers at the Hep C Council for their hard work and support during this year’s Awareness Week – what a fantastic team!
Sponsors Thank you to the sponsors of Hepatitis C Awareness Week 2002: Government of South Australia, Dept. of Human Services. Drug and Alcohol Services Council. Adelaide Central Mission. The AIDS Council of SA. SAVIVE. Nunkuwarrin Yunti. Child and Youth Health. Youth Drug Action Team. Schering-Plough. ASP Harm Reduction Systems. Roche. GlaxoSmithKline.
Supporters Thank you to the organisations who made Awareness Week possible: Relationships Australia. Flinders University. Vietnamese Community in Australia, SA Chapter. C-Clearly. Parks Community Centre. Partners of Prisoners. PLWHA. Second Story. Department for Correctional Services. Royal Adelaide Hospital. Riverland Regional Health Service Inc.
What’s next?
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fter every major project such as Awareness Week there is a process of evaluation and critical reflection (not to mention rest!) Traditionally Hepatitis C Awareness Week has been a mammoth task for the Hepatitis C Council and 2002 was no exception. The planning and lead up to the week is extremely time consuming for staff and volunteers. Following this years efforts there has been some reflection about the week. We have been asking ourselves whether the results gained from an Awareness Week are worth the time and effort invested in organising the events. We are not certain of the answer to this question yet. The Hep C Council has also been brainstorming alternatives to awareness raising if we decide not to continue holding Awareness Weeks. Suggestions so far include organising a conference style event, having a variety of information stalls throughout the community over the year, or paying for media such as newspaper advertisements with information
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about hepatitis C. Hepatitis C Councils around Australia are also looking to the Australian Hepatitis Council for leadership and vision to develop a national approach to awareness raising in the community. Stay tuned for further news as developments occur! If you would like to voice your opinion about the future of Hepatitis C Awareness Week please do so by contacting me at the Hep C Council on 8362 8443 or write a letter to the Editor of the Hep C Community News.
Kristy Schirmer Information Officer kristy@hepccouncilsa.asn.au
Hepatitis C Community News
Issue 21
The Retractable Syringe! Good, Bad, or just plain Ugly? A few words on the issue from SAVIVE. South Australian Voice for IV Education.
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he idea of a retractable syringe has been floating around for many years gathering some support. But we were all a bit shocked and dismayed when the Prime Minister announced it as an election promise. While at first glance many people in the community would think that this is a good idea in order to prevent needle-stick injury and increase safety for others, most people with any knowledge of the health issues involved realize that this is not an effective way of dealing with the problem. The reasons are many and complicated. Firstly being that the perceived problem of carelessly disposed of syringes posing a health risk to people is exactly that, a perception, it’s not actually a reality. The reality is that there has not been one case proven in the world where an environmentally discarded syringe has led to HIV, Hepatitis B or Hepatitis C. That’s not to say it hasn’t happened, just that as yet there has not been a single case proven. All cases of needle-stick injury where transmission has been proven to occur have happened in health care situations where they are dealing with warm wet blood. Some concerns have been raised by the AMA (Australian Medical Association) as to whether the retractable may or may not lead to a false sense of security, undermining efforts of adhering to standard precautions in infection control. Carelessly discarded syringes will still be frightening to the public to see lying around whether they are retractable or not. Most users, particularly since we’ve had Harm Reduction Services and Peer Education, are really quite responsible about the disposal of their syringes. They don’t want users to get a bad name and they don’t want to put anyone at risk. In those areas where syringe litter does occur, such as street based drug scenes, the unsafe disposal of syringes tends to be because of fear of the police. The people are afraid that if they are caught with a syringe in their possession, this will lead to further questioning and searches etc. Another problem is that some models of the retractable syringe require the user to physically engage a mechanism in order to make it retract. This requires the user to be responsible to begin with.
However, the biggest problem will be one of cost. The current 1 ml syringe retails between 13 and 18 cents, the price we have seen for one of the retractable models is $1.50 US. At the present we are still seeing Hep C and HIV transmissions occurring because even though we say “A Clean Fit for every Hit,” this target is not achievable with the current resources available let alone increasing the cost of a single syringe by a factor of 10 or more. It would be devastating to see the closure of needle exchange units because of the cost involved. This has the capacity to plunge us back to the 1970’s where users will hang on to their equipment for use time and time again, except this time HIV and Hep C will run rampant. If the entire purpose of bringing in retractable syringes is because of public fear over carelessly disposed syringes, then in my opinion we should be working from our strengths. For example more sharps safes, needle exchange units, education, etc, and it would be helpful if the police were to come on board and say that they would not arrest or harass anyone found with a syringe as long as it was being returned to a clean needle program. As yet we do not know how the government wishes to implement this, however if this is handled wrongly, it has the capacity to totally devastate our prevention efforts. Therefore it is vitally important that the people currently running clean needle programs are involved in any trials or pilot programs that are to be conducted. SAVIVE’s peak body AIVL (Australian Injecting and Illicit Drug Users League) wants to get user representation on this issue as they represent the people who are going to be using the retractable. Also it would be good to have the Hep C councils and the AHC (Australian Hepatitis Council) represented as they have a lot to do with the prevention of blood-borne virus transmission. Damon Brogan Manager SAVIVE
Hepatitis C Community News
Issue 21
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New Resources Understanding Your Liver Understanding Your Liver
An information booklet for patients compiled by Schering-Plough Pty Ltd. Handy little booklet full of info that most would not know in simple English An information forfrom patients compiled by Schering-Plough Pty it’s Ltd.particular This is a covering a rangebooklet of topics the basic location of the liver, through handy little full factory of info for thatyour mostbody. would not you know. simple it functions as booklet a chemical Also getIna peek at English, the architecture covers a range of topics from the basic location of the liver, through it’s particular of both a normal and damaged liver along with a few words on the complications of functions the as abiopsy chemical for your body. Also you get a peek at the architecture hepatitis, andfactory symptoms of cirrhosis. of both a normal and damaged liver along with a few words on the complications of Well worth a look. hepatitis, cirrhosis. Give us a the callbiopsy and weand cansymptoms post you aofcopy or pick one up next time you’re here. Well worth a look. Give us a call and we can post you a copy or pick one up next time you’re here.
<ready, set, combo> This resource is for people with hepatitis C who have decided to start, and been accepted for, a course of conventional pharmaceutical treatment. At such times you may find that your mind is racing along with all sorts of questions. This booklet may help you to put things in perspective and help to give some solid grounding to what otherwise could seem to be like life spinning out of control. It covers a range of topics from the medical aspect and any work issues that may affect you, to your relationships and taking care of yourself. It is written in a manner that gives you a list of things to think about on each topic along with planning suggestions to help you prepare for these events should they pertain to you. I would recommend that everyone considering conventional pharmaceutical treatment get a copy of this resource. Forewarned is forearmed in my opinion and it could make things a lot easier for you.
Living With Cirrhosis A guide for people living with Hepatitis C related cirrhosis, this includes family, friends and anyone who is in a position of support to those affected. A very comprehensive booklet explaining the liver functions and the effects of liver damage, how the damage occurs and what is actually taking place in the body at the time. People have a tendency to feel more
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Hepatitis C Community News
at ease if they know what is going on and this booklet does just that. It also explains the medical procedures that may be involved and any symptoms that may occur and offers suggestions as to how they could be managed. It provides advice on monitoring your health and points you to further information and support services.
Issue 21
Library and Resource Collection
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i, my name is Joy and I’d like to tell you about the Hep C Council’s resource collection. The most important source of information at the Council is, of course, the people. The staff and volunteers are an absolute fount of knowledge, only they won’t stay in neatly labelled boxes so I have no control over them. But we have been able to work all the other resources into a very useful system. The cataloguing system is fairly friendly and obvious, using headings such as: diagnosis & assessment, transmission & aggravating factors, treatment, lifestyle, rights & discrimination, and special needs groups. There are posters on the wall of the resources room that explain the system, and hopefully this should make it relatively easy to find specific material. The Council also has a fine collection of journals and newsletters from many Hepatitis C Councils and related organizations. Every month the latest issues are checked and details about the main articles are entered into the ‘Journal articles catalogue.’ This catalogue is a great way to locate up-to-date research, opinions and activities from around Australia. Look for it on the shelf where the latest journals are on display. The back issues are kept in
labelled boxes on the top and bottom shelves. Now for the filing cabinet. This is a huge collection of stuff from all over the place: articles from the internet, photocopies from books and magazines, info sent from various companies and organizations, and those bits from the back of everyone else’s filing cabinet. It’s an incredibly useful collection and well worth a serious browse. It’s organised using the same basic system as the books and journal articles, but with a bit more detail. There are signs on the front of the cabinet explaining the scheme. Please feel free to rummage, but it’s nice if things are put back in some semblance of order. There’s also a small but expanding area of CD ROMS and tapes as well. The whole resource collection is relatively small and for this reason items are not generally available for home loan. But there are comfy chairs and quiet places where you can read, watch or listen. And some items can be copied if needed. So that’s the library tour…hope you can get in to check it out: there are some gems in there. I enjoy my time at the council messing around with the resources area and hope that it can be used as much as possible. And a big thank you to Claire S. who was vital in setting up the library area and who taught me so much.
Hepatitis C Community News
Regards Joy
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Inspirations R
ecently a woman I know came to me for advice. She had been frustrated by attempts to help a friend who was not responding. Instead of telling her what to do, I told her this Jewish parable, as told by the old rabbis, which captures the dilemma many of us face in our intimate relationships with lovers, siblings, parents, children and friends. There was a man walking along a mountain ravine. He was well prepared for a long journey, carrying a great wad of rope around his body, a water bottle, compass and appropriate survival items. Along the path he came across another man, who was merely out for an afternoon amble. “Join me,” said the first man, leading the other deeper and deeper into the mountain range. “Could you help me carry some rope?” he asked the second man. The second man happily agreed and tied half the rope around his body. They walked on, chatting, and developing a solid friendship. Then they came to a precarious, swinging, footbridge. Halfway across, the first man tumbled off. The second man felt a huge tug on his body and grabbed the rope. Slowly he peeked over the edge of the wooden bridge, and saw the first man dangling high above a rocky river. “Help me, please! Pull me up or I’ll plunge to my death,” the first man cried. The second man tried to pull up the rope but couldn’t. There was no solid railing or tree to tie the rope to. He didn’t have enough strength in his arms to pull. And it was
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obvious that if he tried too hard, he’d end up toppling over the edge. “I can’t pull you up. You will have to climb up the rope yourself,” he shouted down. But the first man grew hysterical. “No. I can’t climb. I’m afraid. You’ll have to pull me up!” The second man tried again. He stood there for hours, pulling, dragging, pleading with the other fellow to help him. “Please try. I can’t do this alone,” he begged, but the first man remained stuck. “No I can’t,” he yelled back. “Pull me up.” More hours went by, night came. The second man was thirsty, exhausted from the weight. He knew that if the first man didn’t climb soon, then both their lives would be in danger. “Please at least try,” he cried, still trying to pull the rope. “No,” said the first man. “I can’t.” The next day came. The sun was boiling down. Without water, food or rest, the second
Past a certain point, our attempts to rescue someone may endanger our own psyche man was beginning to slip closer to the edge. But he couldn’t let another man plunge to his death. He rationalised that if he let go, the first man may be buffered by the water and survive. But the situation wasn’t so clear-cut. Having ventured this
Hepatitis C Community News
Issue 21
far into uncharted terrain, he believed that only the first man knew the way home, and had water and a compass. Day became night. Night became day. The second man was dizzy, dehydrated and sunburned. He knew that if he closed his eyes, he’d go over. “You must try,” he yelled down. “I haven't got the strength to save you. We will both die.” “I can’t,” cried the first man, dangling desperately at the end of the rope. And on the morning of the next day, the second man took a deep breath, said a little prayer, and let go the rope. He didn’t stay to hear whether the first man survived the fall. He was too busy running to save his own life. The parable has much significance in the relationships arena. According to Queensland therapist, Diane Summer, it captures splendidly the nature of the codependent relationship. This is where two people are unable to move, so stuck are they in some balancing act of interdependence, guilt, obligation and fear — each needing, hoping to be rescued by the other. In friendship and in love the question always remains: How responsible are we for another? Where does compassion end and indulgence begin? And is it them or us we are really trying to help or save? The parable doesn’t tell what happened to the two men. The first may well have swum happily home, having been mercifully released from the rope that entangled and terrified him. (Continued on next page)
Alternatives Biofeedback
(Continued from previous page )
What's clear from the parable is that our survival is our own responsibility. We are not responsible for anyone else’s fears or self-destructive tendencies. We can always try to give good advice and be of service. But past a certain point, our attempts to rescue someone may endanger our own psyche. Nor should we expect others to save us. These are the words I offered to my girlfriend. I didn’t want to save her from trying to save her friend. Merely told the parable and walked away. My parting words were from the Christian adage which echoes a similar sentiment to the Jewish parable: “God helps those who help themselves.” "ostrowr@theaustralian.com.au Acknowledgements: Many thanks to Ruth Ostrow For allowing us to print this article. This article first appeared in Ruth’s column “Heart and Soul” In the Review Section of the Weekend Australian.
Could this form of treatment finally bring mainstream medicine closer to accepting alternative therapies? Biofeedback is a method, which utilises monitoring equipment in order to let the patient see the responses of their attempts. For example, a head injury or stroke has left a person slightly paralysed; a machine that measures muscle tension is connected to the offending muscle group (a leg for instance) Then the patient attempts to move the leg and nothing happens, but a blip appears on the screen. The brain has sent the message and the patient can see this. Then the patients own will and determination to get that blip bigger and eventually move the leg is greatly enhanced thanks to the visual aid. This feedback to the patient, particularly when linked with the use of an electroencephalogram (EEG) that measures brain wave activity, (also known as nurofeedback) has been stated to have great promise in treating numerous conditions. Seeing is believing! Mind over matter perhaps? Alternatively, it is my understanding that the EEG has been used to show altered brain wave activity in those who enter into meditative states. Delving into these states for periods of time on a regular basis would appear to show great benefit to a persons state of mind, contributing to the physical well-being. Enter:- Art Therapy and Meditation. Both of which have been utilised by the Hep C Council and have shown very promising results. We’ll keep you posted with our regular flier’s, and through this publication. For more on Art For more information on Biofeedback Just type “Biofeedback” into your favorite search engine on the Net.
‘EXPLORE YOURSELF THROUGH ART – WOMEN’S WORKSHOP’ 26th October 2002. “Thanks Gina & Deb….When I went to school I didn’t think I had a creative bone in by body….Hey I’m actually very creative – not in the conventional way – ya just got to let it happen!!” “We were able to also talk openly in a supportive and relaxed environment about our own individual approach to managing our health…” “Sometimes as women we forget to take time out for ourselves, to just give ourselves permission to move at our own pace, to laugh loud and strong, to greet the absurd and embrace our own space!” Just some of the comments by women who attended the Art workshop with artists Gina Allain and Debra Cooper. Art Therapy has its roots deep in our creative and ancient psyche. Within a personalised space and ritual experience of being women the workshop utilised paints, pastels and clay to explore and reflect on the participants individuality, personality, abilities, concerns and conflicts. The Council is fully committed to extending and exploring this avenue of expression so that women affected by Hepatitis C can come together in a series of 6 workshops and a weekend retreat in 2003. It is anticipated that this project will enable women affected by Hepatitis C to come together and reflect on where they’re coming from and where they want to go. To meet with their peers in a environment of exchange, fun, celebration and freedom! If you are interested in hearing more about our plans for 2003 please contact Jeanette at the Council. Hepatitis C Community News
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I
thought that if I share my experiences with doing the Combination treatment. It might help some others that are contemplating treatment. Although near the end, (five months into it) I could not wait for the treatment to finish, overall I found that it could be tolerated. Mind you, after having said that, my course of treatment was only six months (having genotype 3A). I somehow feel that it may have more to do with the length of time that one expects to be on treatment rather than the actual time itself. Of course, that’s just a feeling. The first four to six weeks were very much like a severe flu. I felt that perhaps I had picked up a flu virus as well but maybe it was just the Interferon. After those symptoms died down a bit there were other less debilitating ones like the soft tissue inside my nose became very dry and there was always blood present when I blew my nose. I had probably lost about 5 kilos in weight as well and I had a horrible itchy skin, which was cleared up after applying a cream prescribed by my GP. Probably the most concerning symptom for me was the brain fog or short term memory loss, I found that whilst talking to people all of a sudden it felt like all thoughts would just drop out of my head and I couldn’t remember what the conversation was about. People would notice this blank, confused look and fortunately realised what was going on. That symptom actually got more intense and actually took some time to dissipate even after ceasing the treatment. The Ribavirin capsules which I took daily (I think it was three in the morning and two at night although it could have been the other way around, it is a little bit difficult recalling it now as it all seems a bit hazy looking back on it) have symptoms of their own too, they lower your haemoglobin and red cell count making you anaemic which has the symptom of making you feel short of breath and a little bit weak. This symptom is not as bad as it sounds and my GP told me that the only time this would become a serious problem would be if the haemoglobin dropped very suddenly and that one cannot get the
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levels back up with iron etc., as the anaemia is drug induced. The actual injecting of the Interferon wasn’t really the drama that I thought it would be. The drug comes in these neat little ready pens, which you dial up the dose at the bottom of the pen, attach the tiniest needle to the other end and just find a roll of skin around the tummy area and just pierce the skin (which sounds awful but really isn’t that bad). This gets a bit more difficult near the end of treatment as there seemed to be a bit less of a spare tyre as I lost weight. Once the needle is in it’s just a matter of pressing down the end of the pen, which clicks as it goes down. I probably should mention that near the end (fifth or sixth month), I felt that there was a bit of a psychological aversion to putting the needle in, as I knew what the side effects would be like. My hair was also thinning somewhat and that was a bit of a concern. I persevered anyway and I am glad that I did. By the way, the hair does grow back after a few months of ceasing treatment. I found that at the end of the fortnight, which is how long the ready pen lasts, there was always some leftover Interferon. This seemed like a terrible waste and because I wanted to give myself the best chance of success, I started to dial up a bit extra each time. This brought the dose up to about three and a half million units, which my specialist thought that was probably a reasonable tactic, (more is better, he said). Having said that though, that would be an individual choice depending on how severely you experienced side-effects. Check with your specialist first. The most encouraging sign for me to follow through with it all was that the blood results after the first month were good. My ALTs had dropped from always being around the 200 mark to 15, which helped me to feel that it was actually working. They stayed around 15 for the whole six months of treatment and now hover around 25 that I have cleared the virus.
Hepatitis C Community News
(Continued on next page)
Issue 21
I realise that this may not happen with each patient. This insidious virus seems to respond to treatment differently with each individual. I sincerely hope that others have an equally successful time of it. It’s not really a walk in the park but with a bit of preparation and support it can be managed. By the way, I lived alone and still was able to mow my lawns, clean the house etc.; I would encourage anybody who is contemplating it to have a go, as it may well be worthwhile. This might be a bit controversial with some but another thing that I felt helped get me through the side-effects was smoking a bit of dope. I think it helped with the physical stuff but mainly helped to keep my appetite happening. It also may have exacerbated the memory problems but I felt like what the ……, if it makes me feel better? If I had to do it again, I don’t think that I would do it any differently. I should probably mention that I took St. Mary’s Thistle and a vitamin B complex Daily. I would like to add that I undertook Interferon monotherapy in ’96 and although it wasn’t successful in clearing the virus, there were other benefits such as reversing the level of fibrosis from stage 2 back to zero, a rare thing apparently. I’ve spoken to others who undertook the Interferon monotherapy and although they also did not clear, they reported that they felt better for a couple of years due to the reduction in inflammation in the liver. How does it go – “you’ll never, never know if you never, ever give it a go. Fred.
I REMEMBER WHEN I WAS YOUNG, T HINKIN’ NOTHING CAN HURT ME HIV & AIDS WASN’T HEARD OF, LET ALONE HEP C SHARING NEEDLES W ITH PEOPLE, I SOMETIMES DIDN’T KNOW NEVER BELIEVING I’D BE INFECTED. I WENT W ITH T HE FLOW I REMEMBER IN T HE CROSS WHEN T HE CHEMIST WAS SHUT I’D SEARCH T HE STREETS FOR A NEEDLE SO I COULD SHOOT UP ANYTHING T O EASE T HE PAIN OF FEELING S ICK NEVER T HINKING T HERE COULD BE A DISEASE IN T HIS P ICK T HEN ONE DAY I REMEMBER WATCHING T HE T V T HEY SAID DRUG USERS BE CAREFUL OF HEP C & HIV I T HOUGHT ME, NEVER, NO WAY IN HELL I’M FEELING F INE, BUT THERE WAS NO WAY T O TELL I REMEMBER T HE DAY T HE DOCTOR SAID T O ME IT’S NOT NECESSARILY A DEATH SENTENCE BUT YOU’VE CONTRACTED HEP C I T HOUGHT T O MYSELF, THIS J UST CAN’T BE RIGHT AND I HARDLY GOT ANY SLEEP T HAT NIGHT T HE FIRST T HOUGHTS WAS NOW, I’M T HE WALKING DEAD T HEY RAGED IN MY MIND & T OOK OVER MY HEAD BUT I HAVEN’T DIED YET, LIKE I T HOUGHT I WOULD AND I’M NOT USING ANYMORE AN I’M FEELING GOOD AND I KNOW I’LL BE F INE, AS LONG AS I LOOK AFTER MYSELF I KNOW WHAT I NEED T O DO NOW, T O T AKE CARE OF MY HEALTH T HE INFORMATION IS OUT T HERE, IT’S NOT T O HARD T O FIND AND AS SOON AS I GOT IT, I ALSO GOT P IECE OF MIND MY DAYS OF SHARING NEEDLES ARE GONE BUT T HE CONSEQUENCE OF IT FOR ME, STILL L IVES ON.
By: Leanne
Hepatitis C Community News
Issue 21
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A Tale of Two People
M
y partner and I had been seeing each other as friends for a while and it was obvious to both of us that there would be more to it than that. I had been on my own for six years. I have three children, two teenagers and a nine year old. My partner sat me down and told me that he would like for us to take our friendship to the next level, but there was a matter of concern. I could see the difficulty of what he was about to tell me and since I too wanted to go to the next level, I listened as he told me his story. The main concern was that he had Hep C. I had heard of Hep C and immediately connected it with AIDS, but was unsure of how it could be transmitted. Yes, I thought the physical side of a relationship would be out of the question causing an instant problem. Due to my own ignorance in regard to this virus I could have easily up and run away, but because I cared so much about this man, I decide to ask questions first and choose a course of action later. It was obvious to my partner that this could put a division between us. Naturally I was concerned about the effect on his lifespan and his lifestyle. Even as I asked questions I was upset that this man that I wanted in my life may soon be taken away how unfair life can be. Thankfully my partner was patient with me and answered all of my questions, even those I asked twice. Of course there are the kids, they are too young to possibly be infected with a virus that could ruin the rest of their lives, or even shorten it. I soaked up as much information as I could in a short time. My partner was fully informed and able to answer every question I asked. I think the main thing I remember was his firm statement, “No sharing razors, toothbrushes or nail cutters, it is contracted by blood to blood contact”. This showed he was concerned about the health of myself and my children and did not want to pass this virus on to others. Firstly, he was responsible in giving me a choice, we could continue with a
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relationship or end it now before either of us got in too deep. He also took responsibility for the fact that he had contracted this virus even though it was an unknown illness at the time, plus the firmness in his voice in regard to sharing personal items. He also arranged for us to go to an information evening at the council. This information evening was informal and since everyone was there for the same reason, no judgments were made. I felt very comfortable asking questions and received all the answers in language I could understand. I’m no expert in regard to Hep C but I’m no longer ignorant about it either. It hurts me that my partner has Hep C and his health has been affected, but we continue to have a great relationship. We have told only the eldest of my children (the other two will find out later) and surprisingly enough she took it very well, after all she had known my partner for twelve months by this time and got on with him very well. She has been informed of the precautions she needs to take. It is because we are in the know about Hep C that we are not afraid of it. It is because we are informed that we can see when my partner is run down and we let him know “hey, you’re looking a bit grey”, we can see it before he feels it so we can work together. We and I have chosen not to mention this to other members of my family because some members will not understand and think us foolish, they also choose to remain ignorant of some issues in life regardless of facts, so it would be pointless to try to explain it to them, so for peace of mind and no judgement they will not be informed. My final question to my partner was, “How do I refer to this?” He answered simply, “Hep C”. So I did and it isn’t a problem. Sharing my experience in writing, I hope to help others understand that there are two types of people in the world... those you can trust who need to know and... those who couldn’t cope with knowing, it’s up to you to decide.
Hepatitis C Community News
Miss V from Adelaide.
Issue 21
Updates Men, Health & Hep C Survey The Men, Health and Hep C study being conducted by the School of Health Sciences at Deakin University is now in full swing with the majority of data having been collected. The team is hoping to have over 300 questionnaires returned by the end of this year and data analysis will begin in the new year. There is also a push on to get out to the rural communities and collate the rural data as well. Preliminary, if not full results should be available by our next publication.
UPDATE to our readers from last edition where Janette Chegwidden was introduced as our new Volunteer Co-ordinator. Janette has since had a baby and is enjoying some quality time with Tamalia Rose. Born on October 13th 7lb 11oz. Happy and Healthy sister to Joshua.
Congratulations from all of us Janette. Meanwhile our fill in has been George Valiotis who has been doing a tremendous job holding down the fort. Janette will be returning to us on the 29th of January.
Closing down over Christmas We here at the Hep C Council have to do the usual stuff and catch up with family we’ve barely seen all year just like everyone else. So we are going to be closing our doors from………...
Tuesday 24th December 4pm Until th
Monday the 6 of January at 9am. However phone messages can be left and we will ________follow them up when we return.______ For urgent assistance the Hepatitis Helpline through DASC will be receiving calls 24 hours a day, 7 days a week throughout. They can be reached on 1800 621 780
The Annual Report from 2001— 2002 is now available to any interested parties. Contents of which are: ♦ Management Committee and Staff ♦ Chairperson’s Report ♦ Council Activities 2001—2002 ♦ Acknowledgements ♦ Treasurer’s Report ♦ Audited Financial Accounts for Year Ending 30/6/02. Should anyone like a copy please feel free to give us a call and we can pop one in the mail for you, or pick one up next time you visit us here at the Hepatitis C council.
Hepatitis C Community News
Issue 21
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Resource List
If you are interested in receiving any of our free resources, please call the Hepatitis C Council on 8362 8443
Hepatitis C Council of SA resources Hepatitis C Council of SA Inc. ! ! Hepatitis C!!?? What does it mean? (green) ! What is hep C – Low literacy (yellow) ! What is Hep C – Indigenous (red) ! Free Services for People with Hep C (green) ! ABC Positive????? (blue) ! Hep C – Women, pregnancy and babies (cream) ! Support group guide (lemon) ! C Talk – Positive speakers forum (yellow) ! Hep C Dental Care (pink) ! Hep C and sex (purple) ! Hepatitis C & Disclosure – Telling others…what’s the story? ! Hepatitis C – Information for family and friends ! At Home with Hepatitis C ! Hep C Community News-Newsletter of the Hepatitis C Council of SA Information packs (small sized envelopes) Hepatitis C Info Pack (contains selection of ! Council pamphlets, Contact 01 booklet, membership form) ! Treatment Info Pack (Contains information specific to combination therapy) Australian Hepatitis Council resources Contact 01 – Post-test information for hep C ! ! Women and Hepatitis C ! Complementary and alternative therapies for hepatitis C (out of stock) ! The guide to healthy eating for people with hepatitis C (out of stock) ! Preparing for testing – Hepatitis C ! Thinking about treatment (out of stock) ! Health monitor (tool for people with hep C to monitor their own health care including lifestyle, treatment, appointments, side effects and symptoms) ! Ready, Set, Combo! (NEW!) ! Living With Cirrhosis (NEW!) Information/Fact sheets Combination therapy ! ! Genotypes ! Liver biopsy ! Cirrhosis ! Hepatitis C in Australia – a snapshot ! Fatigue ! Pegylated interferon Publications for health professionals Hepatitis C – The Facts ! ! Dental Health and Hepatitis C ! HIV/Viral Hepatitis: a Guide for Primary Care
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Hepatitis C – A Management Guide for General Practitioners (Australian Family Physician) (limited stock) ! National Hepatitis C Resource Manual (limited stock) ! Ambulance Officers and Hepatitis C (NEW!) Resources for CALD communities Hepatitis C ! Transcripts from Support Groups and Conference papers Testing and Hepatitis C (Dr Robina Creaser) ! ! Women and Hepatitis C (Dr Jo Thomas) ! Acupuncture and Hepatitis C (Lynn Lobo) ! Lesbians & Hepatitis C (Conference paper by Gai Lemon) Schering-Plough resources Understanding your liver ! Safe Injecting information Hep C and Injecting ! ! Safer Injecting (produced by the Australian Intravenous League) ! Spoonman-Sharing Info not Equipment (a wallet sized info booklet on safe injecting and hep C) ! Close Shaves (A Streetwize Communications Comic about Hep C and possible modes of transmission) ! Hep C (A Streetwize Communications Comic about Hep C – not for distribution in schools) Tattooing and body piercing resources Hygienic procedures for body piercers protecing ! the health of your customers and you. ! Hygienic procedures for tattooists protecting the health of yourself and your clients ! Safe piercing (postcard with information about responsible, hygienic piercing practice) ! Healthy body art (pamphlet) Postcards Spread the facts…not fear (test your ! knowledge about Hep C) ! Be blood aware (simple information about blood awareness and Hep C) ! This is Bloody Serious! (contains basic hep C facts) Posters and business cards Hep C Info and Support Line (Poster) ! ! Hep C Info and Support Line (Business card, wallet sized) ! Spread the Facts…not fear (Poster) ! This is Bloody Serious! Hep C Awareness Week 2002 (Poster) ! Basic Hep C info (Poster)
Hepatitis C Community News
Issue 21