epatitis C Community News Oct. 04
New directions for Spring
Contents Annual general meeting. Book review. “Enter the zone.”
4 The Parade Norwood. SA 5067 Ph. (08) 8362 8443 SA Regional Callers 1800 021 133
Chat with QEH nurse.
Conversation with John.
C Max Trial.
Hepatitis C-the basics.
New staff profile: interview with Elissa.
New directions with strategic planning.
New resources: “Treat yourself right”
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New resources: “Hep C and injecting drug use.”
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Postal Address Hep C Community News PO Box 782 Kent Town SA 5071
Do you enjoy reading the Hep C Community Newsletter but always want to read more? Check out the Hepatitis C Council of NSW "Hep C Review" online at http://www.hepatitisc.org.au/reviews/reviews.htm
PH. (08) 8362 8443 Fax. (08) 8362 8559 Email: email@example.com Web site: www.hepccouncilsa.asn.au
We would like to thank our Editorial Committee: Danny, Elissa, Eve, Lesley and Peter. Cover art and interviews by Eve Doley. Proof reading by Peter Underwood. and Elissa Mortimer. .
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. Supported by the:-
Hepatitis C Community News
New directions for Spring. Editorial. I’ve noticed that there is a new positive feeling at the Hepatitis C Council these days. The place positively buzzes and hums with activity. After some past changes in management we have now happily acquired a permanent manager in Danny who has been with us for a good eight months or so. Given this stability of management the Council has been able to forge ahead. Worker bees and management board bees have been buzzing away creating a strategic plan to give us new directions for the future. The council will be moving to bigger premises, as we have outgrown the converted suburban house that is at number 4 The Parade, Norwood. We will be so pleased to move to new premises at 3 Hackney Road, Hackney. This should happen sometime in November. We will be closer to town and opposite the wine museum in terraced two story offices adjacent to Woolworth’s Service Station. Our newsletter is also pushing out and going in new directions. The Newsletter Editorial committee has decided to revamp the newsletter to make it more accessible, more uplifting and more attractive. This will have to be within budget constraints of course! In this section of the health sector we have to do a lot with very little. I was asked by the Newsletter Editorial Committee to be guest editor for this edition after the former editor Steve’s resignation. We thank Steve for all of his past hard work for the newsletter. Somewhat surprised, but pleased to be
asked, I agreed to take on the task. I hoped that I hadn’t taken on more than I could chew. Hopefully past experiences working as an English teacher and school-librarian and also as a registered nurse have given me some skills and insights to help with this task. I felt eager to help. I’ve had my L plates on as an editor. I’d like to thank the staff who have so generously helped me particularly in my battles with a recalcitrant scanner. So thank you Megan, Deborah and Elissa. I would like to see a future edition of this newsletter have a section featuring creative work such as writings, drawings and cartoons sent in from our community. I feel that there is a wonderful wealth of untapped creativity out there. One cannot help but notice how much valuable work the volunteers contribute here. I would like to thank all the volunteers who have given their time and energy so willingly to keep the Hepatitis C Council going. Without their efforts the Council would simply not be here in its present form. We hope that you enjoy reading our revamped newsletter. We sincerely welcome any feedback or input from our readers in the form of comments, artwork, creative writing or book reviews. Your guest editor, Eve.
Hepatitis C Community News
Interview with Elissa Mortimer Elissa is our new Information and Resource Coordinator. In her new position Elissa replaces Kristy Schirmer who is currently traveling overseas. Elissa is interviewed by Eve, our guest editor.
still had to run their own homes as well as do their volunteer work. Some of these volunteers were starting to be rewarded with a small sum of money to buy a bicycle or a fridge to help with their work. These women distributed the vitamins and kept records of who received the supplements.
Eve: Iâ€™ve heard that you worked in Nepal. Could you tell us what you did there? Elissa: Iâ€™ve had the idea in my head ever since I was a teenager of helping underprivileged people in developing countries. I am a dietitian and I worked as a nutritionist at the National Vitamin A Program in Nepal. I worked with Australian Volunteers International and our task was to stop problems related to malnutrition by providing vitamin supplements to children. Vitamin A deficiency effects how we develop. Local Nepalese children were having their physical growth stunted and their eyesight and mental faculties were not developing properly. This had a flowon effect on local work capacities. It effected how much food villages could grow and it flowed on further to effect the work capacity of the whole country. My job was to do a research study on how to sustain the Vitamin A Program. I had to talk to and support the local workforce of female community health volunteers. These women were working for nothing other than their training. The best part of my job was working with these ladies because, despite being poorly educated and often illiterate, they had many positive ideas to contribute. Many had never worked outside their households and they
I received a small local salary. It was a fraction of our salaries here. I shared a small house. Standards were low by Australian standards but we were comfortable compared to many of the locals. We had a concrete floor with no carpets and it was freezing in winter. We had to go out the front door to the bathroom and the electricity was not always reliable. We installed hot water, which was a real luxury. I lived there for two years and loved the country and the people. Itâ€™s not the end of the story. I (Continued on page 5)
Hepatitis C Community News
have booked my tickets for a holiday in October. I’m going with my mother. Eve: What are some of the things that you enjoy about your new job? Elissa: I like being so close to the community that I’m working for. I’ve worked in policy and research before but here I’m in daily touch with the community. It’s easy to feel that I’m doing something. I can ask the target people what they feel and I feel that I’m a part of it. A lot of sharing goes on here of personal stories and of information. I feel part of a team. I like working with volunteers. I was a volunteer myself in Nepal. Volunteers can be undervalued. I’m passionate about making the role of volunteers a valued one. They are to be admired for giving their time willingly. It’s been a challenge to learn about hepatitis C but I enjoy learning new things all the time. Hepatitis C is a relatively newly identified disease. Some of the research is brand new and it’s exciting to get E-mails with information coming out of the research setting. It feels like I’m on the cutting edge.
I like this community health sector. I’ve never been a commerce centered person. I love the commitment; the passion and the group drive here. I pick up on that. Health sector workers are more committed and they do a lot with little money. Eve: Under what circumstances could someone affected by hepatitis C ring you for help? Elissa: I am a full-time worker here and I’m available five days a week to take enquiries about anything within the range
of the hepatitis C field. People who are newly diagnosed often ring. Others can ring to discuss the side effects from treatment. Family members can ring me too and they can find it a comfort to discover that they are not alone in the problems that they are experiencing. I am anticipating lots of enquiries about new treatments, new therapies and new trials. I can refer people on to the specialist nurses. If I can’t answer directly I can point people on to the right direction. I can use our library and the internet to gather information for people. As a dietitian I can sort out and discuss any confusion about diet. I have some knowledge of complementary therapies, so I am willing to discuss those as well. Our community seems switched on to knowledge about their condition. Often enquiries show background knowledge and I commend the hepatitis C affected community for being so knowledgeable. Eve: How do you see yourself carrying out your role as Information and Resource Coordinator with local medical staff? Elissa: I’m happy to take enquiries from GPs and nurses. They can ring and ask anything. We welcome their enquiries. It is a way for us to access the community we serve. I have had a few calls from GP’s surgeries where the doctor has passed their clients onto me. I’m happy about that. Other times the doctor’s client has been referred to us.
We have had lots of enquiries for resources from doctor’s surgeries. We have to get our information out there in all GP’s surgeries because these can be the only health services many people access. (Continued on page 6)
Hepatitis C Community News
Interview with Elissa continued…... I’d like more referrals from nurses and GPs. Also we have a wonderful service in our free education sessions. Our educators will give free education sessions to any group who ask.
INVITATION TO OUR ANNUAL GENERAL MEETING
Eve: What do you foresee as being some of the future challenges in your job?
on Monday October 25th at 5:30 pm
Elissa: I foresee discrimination issues as being a major target area. A national campaign on hepatitis C has been recommended by a senate committee. I would like to see it focus on this area as we have a long way to go. Public awareness needs to increase so that discrimination can decrease.
at the FULLARTON PARK CENTRE 411 Fullarton Road Fullarton.
There has been some good work done in the GP sector but we still receive lots of information of GPs not treating people in an appropriate non-discriminatory manner. This is unfortunate, as it is the first port of call for patients. There is lots of potential for us to work with GPs and we need to be positive in our attitude to this. It is also a challenge to give people hope through giving them education, knowledge and support. I think that it can give strength to know that you are not the only one. We are all in this together. I gain strength from seeing and being part of the bigger picture. I am really happy to be here and I’m looking forward to the challenge of helping to overhaul the newsletter and our web-site.
Guest speaker: Mr Jack Wallace Executive Officer of the Australian Hepatitis Council His theme will be, “Mobilizing the Community.”
There will be an election of board members. All members of the hepatitis C affected community are welcome to attend.
Hepatitis C Community News
Supper will be provided.
HEPATITIS C-THE BASICS Some basic information about hepatitis C: Hepatitis C is the second most common notifiable and communicable disease in Australia. It is transmitted when blood containing the virus enters a personâ€™s bloodstream. Hepatitis C can cause inflammation of the liver and whilst most people will not progress to serious liver disease, a number of people will develop cirrhosis and possibly liver failure. It is estimated that over 200,000 Australians and 12,000 South Australians are hepatitis C positive. Each year in SA approximately 800 people are diagnosed with hepatitis C. The main ways people in Australia have got hepatitis C are via: 1. Sharing and reusing of injecting drug equipment (Approximately 80-90% of new infections) 2. Transfusion of blood products prior to screening for hepatitis C in 1990 3. Prisons are a high risk environment for hepatitis C transmission because the prevalence of hepatitis C is high amongst inmates and people in prison have no access to harm minimisation strategies such as clean equipment for injecting and sterile tattooing and body piercing equipment. 4. Unsterile tattooing and body piercing 5. Medical procedures. This is true for a significant number of people who got hepatitis C in other countries before coming to live in Australia. 6. Mother to baby transmission of hepatitis C occurs in approximately 5% of babies born to mums with hepatitis C. Itâ€™s OK to share food, drinks, hugs and kisses with someone who has hepatitis C. Hepatitis C is rarely transmitted during sex and is not classified as a Sexually Transmitted Infection (STI). Blood-to-bloodstream contact must occur for transmission of the virus. Treatment is available for people with hepatitis C. Itâ€™s called Pegylated Interferon. Treatment involves the injection of Pegylated Interferon once a week along with taking Ribavirin capsules twice daily. People with genotypes 1 & 4 have approximately a 40-50% chance of clearing the virus whist people with genotypes 2 & 3 have approximately a 80% chance of clearing the virus Discrimination against people with hepatitis C is common but it is hurtful, intolerable and illegal. A chat with Margery Milner. Margery is the Hepatitis C treatment nurse at the
Hepatitis C Community News
A chat with Margery Milner. QEH nurse. A chat with Margery Milner. Margery is the Hepatitis C treatment nurse at the Queen Elizabeth Hospital. She chats with guest editor, Eve.
“I work here at the QEH one day a week as the hepatitis interferon nurse. We are running special Gastroenterology Outpatients Clinics every Tuesday. These two-hour clinics deal with hepatitis and liver disease. I run the Liver Clinic with the doctor and I am available there for the duration of the clinic. At other times on Tuesdays, I am based in ward 4B. After their liver biopsies, people are referred to me. Patients who come through the Infectious Diseases Outpatients clinic can also be referred to me. As the interferon nurse, I give my clients counselling and education about their treatment. My role is to initiate the treatment and then to give ongoing support. I give ongoing support over 8
the phone or patients can visit me here in 4B which is a gastroenterology ward. For many people their first concern is giving themselves the injection of interferon. I teach them how to do this. They can come back twice, three or four times or as many times as necessary to learn how to inject themselves. Time is immaterial as they can come back until they are confident. Another major concern is, ‘Will I cope with the side effects?’ I give all the information I can about possible side effects. We discuss these issues. I follow up with phone calls to see how they are going. They can also ring me. As patient educator and support person, I follow them through. I tell them that for serious issues such as depression or other medical side effects they must see a doctor. I ask people if they have any problems and they have to tell me if they need help. I don’t see them in their own homes as I only have outpatients. I can refer them to Mosaic Counselling at Relationships Australia or I can link them in with home help services or other services if they need them. Most of the people I see are equal partners in the management of their disease. It’s not me and them. It’s us. We sit down and chat. It’s nothing formal. People have different levels of interest in understanding their blood results. I try to foster interest but I can’t force it. I am happy to discuss blood results. If I have someone who is interested, I encourage him or her to follow and to understand his or her results. I also give every patient a DVD
Hepatitis C Community News
or a video to watch at home. Half of my patients have English as a second language so it would be easier if their results were in their own language. I really need more written information in other languages. Even those who don’t speak English love to hear that their blood results have improved. We have interpreters available here in the hospital and in the liver clinics. I know everybody by name in my book. It’s become like a small little family. I really love this job. I’m forever grateful that I got this job. It’s really interesting to be starting a job at the beginning of a treatment era. You do get to see an outcome. You are working one to one and I like that. I like people. It’s why I have stayed in nursing. I find this job wonderful, as the patients are so nice. Everyone is so courteous and so friendly. I’ve been out to visit the Hepatitis C Council and also to Relationships Australia to meet Anne and Bill so that I can put faces to the names. Discrimination is a huge issue. We always discuss it. The big factor with discrimination is that people do not know enough about hepatitis C. They are scared of things that they don’t know enough about. Your average nurse will ask, ‘Will I catch it?’ They are scared, petrified of hepatitis and HIV if they don’t know enough about them.
the first week in February. My first job was to find some patients. It felt like I almost had to pull them in off the streets but I asked GPs to refer people here. I only have nine active patients even now. One of my first patients has just finished his treatment. There is no waiting time for starting on interferon treatment. We can fast track people here. Patients might wait three or four weeks for their outpatient’s appointment. After waiting for their biopsy result, they can be on interferon therapy two months after their initial appointment. Because this is a relatively new service, we are really trying to fast track our patients. We do encourage people to go along to their GP and be referred here because we don’t have a waiting list. Patients relapsing and not responding to treatment will be a future issue for us and in those cases, we may have to refer them on to Relationships Australia for counselling or onto other community services. We will keep their files on record for when new treatments may come up. Our next edition will feature an interview with a nurse from another Adelaide hospital.
Discrimination can happen. It shouldn’t. It’s not acceptable. I don’t ask people how they got Hepatitis C. It’s not my business and it just doesn’t matter to me. I ask patients how long they’ve had the disease. I never ask them how they got it. We have been offering this service since Hepatitis C Community News
New directions with strategic planning
The board of the Hepatitis C Council
Our manager Dannyâ€™s account of the strategic planning process. â€œI am pleased to have come on-board with the Council at the time the Board began the strategic planning process. It is well timed with the Hepatitis C Council being ten years into its history as a community based organisation. It is important for the Council to be planning the next three-year cycle so that our work is focussed, our progress is monitored and our community and stakeholders are aware of the work that we plan to do. Simply put, the strategic planning process informs everyone where we want to be in three years and how we plan to get there. It is an important process for the Council because there are over 12,000 South Australians living with hepatitis C and we are a staff of nine
people, mostly part time workers, and as many volunteers with a mission to increase awareness and support those affected by the virus. This raises the interesting question of where we should be directing our attention and how we should be delivering our professional services. Part of strategic planning is the process of reviewing our mission and vision in the context of where we are at as a Council, what the community wants from us, and how the hepatitis C virus is impacting the general community at this stage of the epidemic. On a practical level the process will help us develop strategies to identify the work that we need to be doing over the next 3 years so that we can maximise the community response to hepatitis C in South Australia.
Hepatitis C Community News
Everyone involved in the strategic plan should benefit from it but ultimately we want the benefits to be felt by the communities directly affected by the virus. Part of the strategic planning process is to consult with community and stakeholders for their constructive feedback on the mission, vision and strategies the staff and board are presently working on. Community consultation is so important because it is lived experiences that inform us of services needed and advocacy issues to be addressed. We have engaged an external facilitator, Lindsay Holmes, to help keep us accountable to the process and to mediate some tough discussions. I am really satisfied by the level of engagement from the staff at the Council because they are working the frontlines and collectively hold a vast knowledge and understanding of hepatitis C. They have really helped inform the Board of the breadth of issues related to hepatitis C and laid the groundwork for the Board to target the strategic plan in a practicable way. So far the staff and board have met together for 3 workshops on strategic planning and the board has met on two occasions subsequent to this. A draft plan is complete but the Board will meet one more time to examine it again before we distribute the plan for broader consultation. I expect that the draft plan will be available for the public in November 2004. We want to get it right so there is no pressure with deadlines.
people living with or affected by hepatitis C. We will always be available to provide education, information and support for the directly affected communities, their families, friends and partners, as well as any member of the general community who wants to know more about the virus.
The staff and volunteers at the Council do an incredible amount of work in prevention, advocacy and individual support and the outcomes far outweigh the expectations that come with staffing and budget constraints.
In light of the sheer numbers of people impacted by a hepatitis C diagnosis it is time to examine how best to deliver our services. My own view is that over the next three years we will orient our activity to making greater impacts at a systems level so that our work will help ensure that appropriate services and government departments are planning for the needs of people living with or at risk of hepatitis C. We are already making great inroads working with people at risk of hepatitis C through community development and this strength should be fostered. There are some big challenges ahead for the Council if we are reach our fullest potential in the non-government sector but I know that we possess the skills and motivation to get there. Iâ€™m looking forward to being part of the Council over the next three year plan.â€?
There will be no big surprises with our strategic plan. The Council will remain the stateâ€™s peak body representing those
Hepatitis C Community News
A conversation with John. John talks with Eve, our guest editor.
Artwork by John Shannon
Eve, “John, I am often amazed by how many people feel that they know you. I feel that you are a legend in Adelaide. the Hepatitis C Council has been lucky to have you as a volunteer for many years. What does it mean to you to be a volunteer at the Council?” John: Through this Council I’ve learnt to be with people who are optimistic and positive. The supportive environment that the Hepatitis C Council provides has enabled me to leave my chequered past well and truly behind. I’ve noticed that the people in this health sector tend to be by nature good and unselfish people. They are not in it for themselves. I’ve received a lot of support here and I’ve made many valuable friendships.
There is a lot, here, in the way of opportunities to avail yourself of. I’ve enjoyed seeing some other people get themselves certificate four in community health through the opportunities offered here. It’s good to see other people climb and rise up and grow. I remember one young man in particular, he was a street kid who seemed totally untogether, and he walked in off the street and got training here. He cleared the virus and now he has a great personal relationship with a wonderful woman. They are really going places together. Now he’s walking in seven league boots. He is even working in a managerial position. It’s great to see that sort of thing happen.
Hepatitis C Community News
I’ve done five training courses here myself, including positive speaking, computer courses and phone training. I have the certificates. I spent some time living in Berri and I’m not one to sit twiddling my thumbs. I like to keep busy. I actually used those certificates and also references from people at this Council to help me to get jobs up there in Berri. I worked as a volunteer in the art gallery in the local Community Arts Centre. I also did some work for The Salvation Army while I was up there. I enjoy art and I have done some artwork for Hepatitis C Council publications. It’s been very satisfying to see my own artwork in print. I feel somewhat immortalised by seeing it in print. As well as doing volunteer work I also regularly do a few hours paid work here every week. I consider myself lucky. I’ve got lots to be grateful for and I feel that I am coping well. I attribute that coping to the support that I get here. This place has helped me to get the insight and the knowledge to cope.
years ago, living an alternative life-style in the rainforest in Northern Queensland. We still hold some of those spiritual ideals from then, dear. They were nice ideals. We are and were a part of the universe. Yes, I’m known by lots of people in Adelaide. It’s a small scene. In fact, the world is a small place. When I was younger I made lots of friends through music. I was a good classical guitar player. I used to be able to pull a crowd by playing solo. Often I played on the banks of the River Torrens. I used to play guitar everywhere. I was also in a couple of exceptionally creative but definitely non-commercial bands. I was quite a good bass player in those bands. When I was younger I taught classical guitar at Rostrevor College and I’ve also taught bass guitar, rhythm guitar and classical guitar at the Academy of Music on Main North Road. I have studied music formally myself. In fact, it was one of the people who used to listen to me playing solo classical guitar on the banks of the Torrens who influenced me to come and make contact with this Council.
I have a good support system. I manage to evade the blues and gloom pretty well. My wife, my GP at O’Brien Street, my specialist at Flinders Hospital and the Hepatitis C Council are all part of my strong support system. The O’Brien Street Clinic seems to deal with all the big issues and my specialist at Flinders is very empathetic and he has been a great help to me. Yes, I am facing serious health issues but my attitude now is I’m not facing a death penalty any more than anyone else is. I’ve learnt to develop and accept my own spirituality. Remember, Eve, all those
Hepatitis C Community News
and urine samples are collected at most visits for Disclaimer: testsC and to measure theindependent, immune "laboratory The Hepatitis Council of SA is an response to the study vaccine. Patients receive a community-based, non-profit membership total of 3 doses of study vaccine or placebo (eg. organisation funded by the Department of Health. 1 dose of vaccine/placebo every 28 days) which The following CMAX study is based at the Royal is administered by intramuscular injectionforintothe Adelaide Hospital. The sole purpose the deltoid muscle of the upper arm. inclusion of the CMAX trial brief is to make our readership aware of current studies available to Following each dose, patients wouldAustralia. be required people with hepatitis C in South The toHepatitis completeC Council diary cards which provide did not profit from the information about status, medication use C inclusion of thishealth article in the Hepatitis and alcohol consumption. At the final visit Community News”. patients would also be required to have a liver biopsy at the Gastrointestinal Unit at the Royal
CMAX (Clinical, Medical and Analytical eXcellence) is a clinical trials unit based at the Royal Adelaide Hospital. CMAX is currently conducting a clinical trial investigating an experimental vaccine, which is being developed as a treatment for hepatitis C. It is a unique product which is a combination of the hepatitis C virus (HCV) Core Protein (antigen) incorporated into an adjuvant which is made up of natural cellular fats and cholesterol. An antigen is a substance which causes the body to make antibodies. An adjuvant is a substance that helps the body to make an immune response that fights HCV. The purpose of this study is to establish the safety and tolerability of the vaccine and its effectiveness in inducing an immune response in male patients with chronic Hepatitis C infection at two dose levels (3 doses of 5 mcg or 3 doses of 50 mcg), compared to a placebo vaccine (no active medication). In order to determine eligibility for this study, patients will be required to undergo a medical screening assessment. At this visit, patients first need to sign an Informed Consent Form to document that they have understood all the information regarding the study and have had the
opportunity to discuss the study in detail with the Principal Investigator or a medically qualified nominee. Following consent, patients will undergo a complete medical examination that includes a physical examination and vital sign measurements (pulse rate, blood pressure, respiratory rate and body temperature). Details of the patient’s medical history, average weekly alcohol consumption and fibrosis score from the patient’s last liver biopsy will be recorded. A urine sample and blood sample is collected in order to perform laboratory tests such as urinalysis, complete blood examination, blood biochemistry, screening for hepatitis B, Human Immunodeficiency Virus (HIV) and hepatitis C. To be eligible for participation in the study patients must: • Be male, aged 18 to 60 years • Have had previous interferon-based treatment • Be hepatitis C antibody positive and hepatitis C RNA positive following the interferon-based treatment (ie. ‘Non-responder’ or ‘Relapser’) • Have had a liver biopsy within 24 to 36 months prior to screening, depending on the results of the biopsy. This liver biopsy must show no evidence of cirrhosis. There are also a number of criteria would exclude patients from the study, such as: • Any current evidence of drug or alcohol abuse • A history of severe allergy to previous vaccinations • Any current clinically significant medical condition, that in the opinion of the Investigator might interfere with the study objectives • Haemophilia • A diagnosis of cancer within the last 5 years (with the exception of adequately treated basal or squamous cell carcinoma), • Current Hepatitis B infection or HIV infection or high risk behaviours for HIV or hepatitis B • A psychiatric illness or any other illness, which will impair the ability to give written informed consent In addition to the above criteria, there are a number of medication restrictions that apply both in the period prior to starting the study and for the entire duration of the study. Those patients that satisfy all the criteria and are accepted into the study would be required to attend a total of 11 visits to CMAX on an outpatient basis, over a 6 month period. Blood and urine samples are collected at most visits for
Hepatitis C Community News
Adelaide Hospital in order to show if there have been any changes in the liver since the beginning of the study. General laboratory blood and urine results (biochemistry, haematology coagulation studies and viral loads) as well as the end of study liver biopsy report will be made available to patients on request.
New Resources! â€˜Treat Yourself Rightâ€™
Patients in the study will be reimbursed for costs associated with travel and/or parking for specific study visits and will also receive financial reimbursement for associated discomfort and inconvenience. Patients will be provided with contact details for both CMAX and the Principal Investigator which may be used at any time in case of medical emergencies during the study or for any urgent questions regarding discomfort or injury associated with the study. General questions and appointment scheduling can be directed to the study coordinator during business hours. At the end of the study, after all safety data has been reviewed, those patients that received 5 mcg doses, or placebo vaccines may be offered further vaccinations with the 50 mcg vaccine. If you are interested in participating in the study, or if you would like to receive further information regarding the trial please call the CMAX toll free number 1800 150 433 or contact the study coordinator Samantha McDonnell d i r e c t l y o n ( 0 8 ) 8 2 2 2 3923 .
The new resource produced by the Hepatitis C Council of SA for people considering or starting treatment is now available! This booklet was developed in collaboration with community members who have been through treatment for hepatitis C. It incorporates a summary of the side effects often experienced on treatment and practical strategies to address these side effects. This booklet has been a collaborative project of the Hepatitis C Council of SA, Relationships Australia (SA) and the Royal Adelaide Hospital Viral Hepatitis Centre. The Treat Yourself Right booklet also includes a list of referral agencies in South Australia. A must for anyone considering or starting treatment! Ring the council to request copies of this fantastic new resource!
Hepatitis C Community News
Book review column
This is a new column which depends upon contributions from the hepatitis C affected community. We invite our community to send in book reviews on issues that they feel are relevant. A book review by Fred Robertson
favourable hormone response, especially in terms of glucagon, insulin, and the eicosanoids. Eicosanoids are what the author calls “superhormones.” He says “If insulin and glucagon are your portal to the Zone, eicosanoids are the Zone”. Eicosanoids are a powerful class of hormones. (Remember this word. You’ll hear it again and again in the course of the book. It’s pronounced eye-kah-sah-noids.)
ENTER THE ZONE What Enter the Zone by Barry Sears PhD, is about - is simply- food. The author says that “Food is far more important than just something you eat for pleasure or to appease your hunger. Rather, it is a potent drug, that you’ll take at least three times a day for the rest of your life. Once food is broken down into its basic components (glucose, amino acids, and fatty acids) and sent into the bloodstream, it has a more powerful impact on your body-and your health-than any drug your doctor could ever prescribe.” Sears goes on to say: Every drug has a therapeutic zone. Too much of the drug in the bloodstream can bring on a toxic reaction, too little can make the drug ineffective. For the drug to work, you have to maintain the right level in the bloodstream. So it’s not just the drug that treats your condition and restores your health, its also the consistency and moderation of the dose-in other words, staying within that therapeutic zone. The same is true of food. The key is to maintain a consistently healthful balance of eicosanoids over the longest possible period of time. Every meal and every snack you eat should have the desired balance of macronutrients - protein, carbohydrates, and fats - that produces an appropriate and
Basically, there are two main types of eicosanoids, good ones, and bad ones. The good ones promote good health and build the immune system and keep you in the Zone whereas the bad ones (which are produced by insulin), undermine the immune system and keep you out of the Zone. From the Preface: “It occurred to me that if someone could control eicosanoids, they would actually control virtually every aspect of human physiology, including the cardiovascular system. Since eicosanoids are involved in virtually everything the body does, controlling them might represent a new paradigm for health and illness. It seemed to make sense that many of our disease states - heart disease, diabetes, arthritis, and cancer, to name just a few - might be the result of imbalances among the eicosanoid hormones.” “Restoring and maintaining a proper balance of eicosanoids might help prevent or even become the primary treatment for these diseases. Even better, it might help maintain a state of nearly perpetual good health: a molecular definition of ‘wellness’ that would lead to a better quality of life.
Hepatitis C Community News
The author then spent six years developing this dietary program, testing it first on himself and family. He then refined and tested this eicosanoid-favourable nutritional system on world-class athletes. He also tested it on people, with diabetes, heart disease, HIV/AIDS and Chronic fatigue. In addition, the program has been tried by hundreds of ordinary people who simply wanted to lose weight and feel their best. Essentially, it’s about the right ratio of protein to carbohydrates according to your body size. It sounds like, on average one should eat nearly equal amounts of the three basic food groups protein, carbohydrates and mono unsaturated fats. Everytime you have a meal or a snack, one needs to include the proper ratio of all three to keep you in the Zone. Never, apparently, eat carbohydrates on their own as this will produce insulin, which in turn creates the bad eicosanoids the hormones that undermine our immune systems and adversely affect our health. For me, personally, this was a very important piece of news as I am sure a lot of readers of the Hepatitis C Community News would be aware that hyperinsulinaemia or insulin resistance is a very serious problem for a lot of people living with hepatitis C. If not managed correctly, insulin resistance will almost certainly, eventually, develop into type 2 diabetes. However, if one eats a Zone favourable diet, which is based on the hormonal
responses generated by food, and in particular on an understanding of why the ratio of insulin and glucagon is important in controlling eicosanoids then perhaps even the insulin resistance might not have such an impact on our health. I would like to quote an article from last year’s Gastroenterology publication on “Insulin Resistance”. “Hepatitis C Virus may induce insulin resistance irrespective of the severity of liver disease,” found researchers in the December issue of Gastroenterology. They found that chronic hepatitis C virus infection can be associated with an increased prevalence of type 2 diabetes. Dr. Jason Hui’s team concluded, “Hepatitis C virus may induce insulin resistance irrespective of the severity of liver disease, and further, our findings support the hypothesis that insulin resistance may contribute to fibrotic progression in chronic hepatitis C virus infection”. Gastroenterology 2003; 125(6) : 16951704 10 December 2003 This book Enter the Zone contains recipes and has a sound index. It was published by Harper and Collins in 1995. Fred Robertson.
Hepatitis C Community News
The Hepatitis C Community News needs a new Editor!
We are interested in a suitably skilled community member to take on this part-time role on a contract basis. The skills we are looking for are: ∗
Experience in layout and production of written publications
Excellent computer and internet operation skills
Writing & proof-reading
Research & interviewing
Planning and organisational skills and the ability to meet deadlines
Ability to work with staff and volunteers on the Newsletter Editorial Committee Hep C and Injecting Drug Use
Please obtain a position description from the Hepatitis C Council of SA. Phone or email us: P: 8362 8443 E: firstname.lastname@example.org
Please forward a CV and cover letter to the council by COB Friday 5th November, 2004.
This resource was funded by the Drug and Alcohol Services Council and designed and produced in collaboration with SAVIVE (South Australian Voice for Intravenous Education), Hepatitis C Council of SA and DASC. The resource is available now in a walletsize booklet and as an eye-catching poster. As you can see, the design of the artwork is very appealing. This resource was developed through consultations with focus group participants who we thank for their generous involvement. Contact us here at the Hepatitis for copies of the wallet-book or with all resources available Hepatitis C Council, there is no either resources or postage costs.
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C Council poster. As from the charge for
READERS’ FORUM We need your comments and views The Hepatitis C Community News invites you to have your say. We want to know your views on issues concerning hepatitis C. What can be done to reduce the transmission of hepatitis C? How can governments help to educate the public about this virus and its effects? What medical and support services are needed for people with hepatitis C? Let other readers know what you think. And we’d like your feedback on this newsletter. Do you want to know more about the treatment of hepatitis C and the management of symptoms? Or perhaps you’re looking for information on how to deal with discrimination? We want to hear from you. Send your thoughts and comments to the Readers’ Forum, Hepatitis C Community News, PO Box 782, Kent Town, SA, 5071 You can e-mail us at email@example.com or phone us on 8362 8443. It’s your newsletter. Have your say. [Comments and opinions may be edited for reasons of clarity or length. The Hepatitis C Council may express an editorial view on any correspondence.]
Hepatitis C Community News
Hepatitis C Council of SA
The Hep C Council provides Information, Education and Support to the Hepatitis C community and those at risk. The council provides information and education sessions. 4 The Parade, Norwood.
A health service for Aboriginal and Torres Strait Islander People. Wakefield Street Clinic 182-190 Wakefield Street, Adelaide Phone: 08 8223 5011
Hep C Info and Support Line
Adelaide Dental Hospital
Phone the Hep C Council for confidential information and support about hep C, as well as free written information. Phone: 8362 8443 or 1800 02 11 33 (SA Regional Callers) Web: www.hepccouncilsa.asn.au
The Adelaide Dental Hospital is a specially funded clinic for people with hep C who also have a Health Care Card to receive priority dental care. Some research on dental health is carried out at the clinic. Phone the Hepatitis C Council for a referral on 8362 8443
MOSAIC-HIV and Hepatitis C Counselling A free and confidential counselling service provided by Relationships Australia (SA) for anyone whose life is affected by HIV or Hepatitis C. Living Well with Hepatitis C courses are run periodically throughout the year. 49a Orsmond St., Hindmarsh, Phone: 8245 8100 and ask for MOSAIC.
PEACE (Personal Education and Community Empowerment) PEACE provides support, education, information and referral services for culturally and linguistically diverse communities affected, or at risk of infection of hepatitis C and/or HIV. Phone: 8245 8100 and ask for the Peace project
SAVIVE (SA Voice for IV Education) SAVIVE provides peer-based support, information and user education. SAVIVE is a Clean Needle Program outlet. 64 Fullarton Road, Norwood. Phone: 8362 9299 Email: firstname.lastname@example.org
Hepatitis Helpline Operated by the Drug and Alcohol Services Council, Government of South Australia. Provides 24 hour information, counselling, referral and support. Phone: 1800 621 780 (freecall)
Calming the C support group A group for people living with Hepatitis C, initiated by community members, to provide support and the opportunity for ongoing education and information sharing. Meets fortnightly on Tuesdays 12:30-2:30 pm at the Hepatitis C Council. Phone: 8362 8443
[CNP] Locations for statewide Clean Needle Programs Contact ADIS [Alcohol & Drug Information Service] Phone: 1 300 131 340
Hepatitis C Community News