- Awareness Day
- State Strategy
- News in Brief
- Complementary Therapies
- Fatigue and Hep C
- From Doug’s Desk
- Sexual Transmission
- Aushep 8 Diary
- Mail Bag
- Hepatitis Chronicle
- Women’s Study
The first Hepatitis C Awareness Day in SA was held on Thursday 9 March 2000. Council staff and volunteers held a stall in the Mall during the day and many people who came up for information and a chat identified themselves as having hep C or a friend or relative who had hep C.
The Launch of Hepatitis C Awareness Day was held at Caos Café that afternoon and featured a session “Talking Positive” where a panel of four hep C positive people discussed the impact of hep C on their lives with Jane Lomax-Smith, Lord Mayor of Adelaide.
The Hon Robert Lawson, Minister for Disability Services officially launched the Day and Linda Matthews, SA Commissioner for Equal Opportunity launched a Hepatitis C and Discrimination pamphlet which was a joint project between the Commission and the Council.
The new Hepatitis C Council web site was also launched on this day and the address is www.hepccouncilsa.asn.au. We hope our readers connected to the Internet will check out this site which contains back copies of Hep C Community News, links to other relevant web sites as well as information on Council services and publications.
On the Monday before Awareness Day, the Hepatitis C Council, Drug and Alcohol Services Council, Marion Youth Centre and COPE ran a hepatitis C education and information sharing forum for workers in the Needle and Syringe Program. This was an opportunity for workers in the sector to come together to get up-to-date information on hep C and look at ways of incorporating hep C prevention/education messages in services for people who inject drugs.
All of us at the Council are pleased with our efforts in running the first Hep C Awareness Day in SA and hope to go bigger and better next year !
The Review of the South Australian Response to Hepatitis C.
Hepatitis C is now the most prevalent chronic condition in Australia with an estimated 1.1% of all Australians living with hepatitis C. People living with hepatitis C are primary partners in the effort to reduce its transmission, to improve clinical care and ensure community support service quality and availability.
In 2000 the first National Hepatitis C Strategy will be released after a two year period of consultation and preparation. It is therefore timely to look at the principles, objectives and activities which have guided the SA response to hepatitis C in the past in order to ensure the quality of our program and policy response in the future.
The HIV, Hepatitis C and Related Diseases Program (HHARP) in partnership with the Hepatitis C Strategy Development Working Group is conducting a review of the South Australian response to hepatitis C from 1996-1999, to identify the key elements for the development of the next phase of SA’s public health response to hepatitis C. In conducting this review, HHARP will also seek to identify gaps in service delivery and education and prevention programs as well as the key elements for the development of the next phase of South Australia’s public health response to hepatitis C.
A Review Team has been contracted to assist with the Review process. The Review will utilise a range of information gathering techniques including a questionnaire, a community consultation and interviews with relevant stakeholders. This is to ensure that all members of the affected communities have an opportunity to participate in the review through the provision of a range of ways to participate in the consultations.
Your input is needed if we are to develop an effective response to hepatitis C in 2000 and beyond.
To take part in the Review process by filling in the questionnaire, please contact the Manager of HHARP - Ms Kim Petersen, on 08 8226 7308 for a copy.
If you wish to take part in a focus group on the response to hepatitis C 1996-1999, please contact Kerry Paterson at the Hepatitis C Council on 8362 8443.
If you want to know more about the focus groups or any other aspect of the Review contact Helen Radoslovich from the Review Team on 0408 812 319.
RPI Announces First Human Dose in Anti-HCV Ribozyme Trial:
BOULDER,Colo.,Feb.16/PRNewswire/-Ribozyme Pharmaceuticals, Inc. (RPI) (Nasdaq: RZYM) announced today the initiation of a Phase I clinical trial with the first dose of an anti-Hepatitis C virus ribozyme therapy given to a human volunteer. The first study of the anti-Hepatitis C virus ribozyme, LY466700 will consist of a safety and pharmacokinetic study in normal volunteers followed by a second study in HCV infected, treatment naive patients. The second study will be a multi-dose clinical study designed to examine safety, pharmacokinetics and the extent of HCV RNA reduction in the blood. The clinical trials are being conducted by Eli Lilly and Company, RPI's partner in the development of LY466700.
LY466700 is a chemically synthesized ribozyme that is designed to selectively cut Hepatitis C virus (HCV) RNA and inhibit viral replication. It should be effective against all known HCV genotypes since it targets a conserved region of HCV RNA and is also expected to be effective even after infection or replication has been established. The Anti-HCV ribozyme trials could represent a major advancement in the fight against Hepatitis C," said Myron J.Tong, Ph.D., M.D., Chief of the Liver Center, Huntington Memorial Hospital and Professor of Medicine, University of Southern California. "These will be the first clinical studies of an agent that directly targets the Hepatitis C virus."
Ribozymes are the product of Nobel Prize winning science and are synthetically engineered to act as "molecular scissors" capable of cleaving target RNA in a highly specific manner. Preclinical studies presented recently at the American Association for the Study of Liver Disease conference demonstrated specific inhibition of chimeric HCV-poliovirus replication in cell culture with a ribozyme mechanism of action. In addition, ribozyme uptake by liver cells in mice was shown following either subcutaneous or intravenous administration. LY466700 has also shown an enhanced effect when combined with interferon in cell culture studies.
This press release contains forward-looking statements that involve risks and uncertainties, and actual events or results may differ materially.
Abridged press release from Ribozyme Pharmaceuticals, Inc.
(LY466700 was previously known as “Heptazyme”)
*Dr. James Wright of Sunday Mail fame wrote a piece on a non-drug medication that increases stamina. Co-enzyme Q10 has apparently been around for 10 years or more but has just been rediscovered and now goes under the name of ENQTEN. Co-enzyme Q10 is claimed to help in stressful situations and help cope with heavy work schedules, endless household chores and maintain stamina and quality of life. Co-enzyme Q10 also helps neutralise dangerous body radicals, which damage vessels, and it provides more oxygen to tissues. Dr. Wright says that he takes one each day.
*Although I haven’t as yet tried Shark cartilage (my financial situation hasn’t allowed it), I am still going to give it a try! Some friends have reported that they believe that it is helping with their aches and pains, and others have reported that it gave them aches and pains. It seems that if you do suffer from arthritis, it works brilliantly but not so much improvement if you don’t have arthritis, so if you take it you will have to see if you are among the group that it helps. Unfortunately I quoted the wrong phone number in the last issue and the correct number is (08) 8682 5696. Apologies to all.
*In the spring edition of the Hep. C Community news, I mentioned that there was a trial in Sydney using herbal or phytotherapy (plants). The trial is still going so we haven’t heard any results as yet but one can still buy Astragalus or Astra-forte at any health food shop and take it in the meantime, it is an excellent liver tonic. Other good supplements to take are Spirulina for energy, Gingko Biloba to promote a bit more cerebral activity if you feel a bit sluggish (it is also an anti-oxidant).
*A tablespoon of apple cider vinegar in a glass of water also acts as a bit of a pick-me-up.
*There is caution advised if you take lots of vitamin C (which is a good thing to do), not to take it with protein as it then raises iron levels in the blood, which is harmful to the liver. However vitamin C is an excellent anti-oxidant and we also need lots of protein (your immune system needs protein to build on), so take them separately. We must remember that if we can slow down the progression of liver damage from Hep C by protecting our livers, not only does it give us better quality of life; your liver may be in better shape by the time that a cure is available!!!.
In this month’s edition I was to review an article on hepatitis C and discrimination – which I did. However just one day before going to print we were informed that the article could not be released for public consumption until later this year. So, what we have instead is a review of an article on interferon induced mood and cognitive deficits written last year which I felt needed re-working - sorry but it is still in its original state. Before going on to the review there is one piece of information that I didn’t want to sit on for too long and that is that one of the American Websites on Hepatitis C - Hepatitis United (Robina was mortified to discover it wasn’t a football team) has decided to go completely alternative. This site has supplied us with some good quality information over the last few years specifically some very comprehensive and clinically accurate FAQ sheets on hepatitis C. They state that they “oppose all use of Interferon drug treatment programmes”. Their rationale is that herbal treatments are less toxic to the immune system. They intend to run their own trials on herbal and alternative treatments. This view is one that I would not personally endorse without replicable evidence, which they are unable to provide. However with such a large proportion of people with hepatitis C interested in such treatments (see this column previous edition) I thought that perhaps some of our readers may want to contact them at http://www.hepu.org/
The article “Mood and Cognitive Side Effects of Interferon Therapy” Seminars in Oncology, Vol 25, No 1, suppl 1 1998, is interesting for a number of reasons; it is the first I have come across that attempts to link interferon induced depression with current theories of depression; it looks at possible long term psychiatric symptoms related to interferon treatment - in most cases they stop when treatment stops, The study looked at the effects of interferon across a number of different illnesses, not just hepatitis C. The study also looked at a number of treatment strategies. At a personal level this article was also satisfying in that it vindicated an unsupported claim that I made a few years ago at one of those Do’s in the Hills where GPs who are either bon vivants or slow accumulators of CME points are tempted out into the cold by promises of nouvelle cuisine, unlimited amounts of red wine and narratives from the wrong side of the tracks. I said then that when I was on interferon I experienced what I believed were frontal lobe deficits similar to those found in schizophrenia - frontal lobe dysfunction effects emotions and the sequencing of information - I also said I couldn’t prove it. Just for the record I am not anti-interferon or for that matter anti-science (although I am anti-bad science). In fact I am here sitting at this desk writing this article, a testament to the good science of Alexander Fleming without whose discovery of penicillin I would now be dead or an invalid from the meningitis I contracted at age nineteen.
This article deals with cognitive impairments and mood disorders induced by interferon in a number of chronic illnesses including hepatitis C. The authors state from the outset that these symptoms are usually not severe, they are dose related and reversible i.e. when treatment stops the symptoms usually disappear. However, if the symptoms are not treated and become chronic they can reduce quality of life and because the dose of interferon may need to be lowered they can reduce the benefits of treatment. Cognitive impairments such as memory loss, depression, lack of initiative and generalised slowing have been observed in experimental conditions with healthy subjects after a single dose of 1MU of Interferon. These symptoms are consistent with frontal/subcortical dysfunction and similar to symptoms found in subcortical dementia and Parkinson’s disease. The authors state that these symptoms are not associated with the underlying disease, other treatments or medications or psychological responses to the illness. Whether someone on Interferon develops cognitive deficits depends on duration of treatment, dose and route of administration i.e. subcutaneous or intravenous. What seems to be important is not the dose itself but the cumulative effects of Interferon in the body over time - the longer someone is treated the greater the risk of cognitive deficits. Intravenous administration has been shown to be particularly toxic and patients who have previously undergone whole brain radiation therapy are considered to be at high risk for these symptoms. Generally symptoms disappear 3 weeks after cessation of treatment, but in some patients they can persist for months or even years. The next part of the article deals with mood disorders, or strictly speaking depression. Firstly it explains some of the neurobiological theories and mechanisms which are thought to be involved in depression not related to another illness then, it goes on to look at how these same theories can be used to explain depression related to interferon.
There are a number of biological theories of depression. The three described by the author are the cortisol or stress diathesis model, the monamine model and the cytokine model. The cortisol model has been around for a long time but has recently been given new currency by a researcher called Nemeroff. According to this theory when an individual is exposed to a fear arousing situation their body reacts by inducing the secretion of a hormone in the hypothalamus, which then induces the pituitary gland to release another hormone which finally cause the adrenal glands on the top of the kidneys to secrete cortisol into the blood stream - this pathway of glands and hormones is known as HPA axis. Cortisol released into the blood results in a flight/fight reaction and causes the body to increase fuel supply to the muscles, reduce appetite, reduce sex drive and heighten alertness - each of these features is consistent with depressive features and depressed patients have been shown to have enlarged adrenal and pituitary glands and an overproduction of cortisol. The theory has been used to explain why some people are more prone to depression than others. It is thought that people who are continually exposed to stressful situations or experienced lots of trauma in their lives are more likely to have high cortisol levels and are always at risk of depression following a particularly stressful event. Lifestyle changes which are stress-reducing have a therapeutic value.
The next theory called the Monamine or Neurotransmitter Theory describes the action of two neurotransmitters (chemical messengers in the brain) serotonin and noradrenaline. When one or both of these chemicals is in short supply in the brain the resultant effect is the onset of depression. Anti depressant drugs, especially the newer ones called Selective Seretonin Reuptake Inhibitors or SSRIs, are designed to interfere with the transport system of these chemicals in the brain with the aim of keeping the levels of serotonin (most SSRIs target only serotonin, but a few target both neurotransmitters) at a normal level in the brain.
The basis of both these theories has been around for at least forty years but grows more sophisticated as research slowly maps out the pathways, roles, dynamics and influences of these chemicals in the brain and body. As yet there is no overarching theory that connects these two separate systems. However we do know that they are connected in some way. Individuals who have high levels of cortisol respond to antidepressant medications (e.g. SSRIs whose action is to increase the availability of serotonin) by a reduction in depressive symptoms and a lowering of cortisol levels in the blood.
The third theory Cytokine Theory is very recent and not very well understood at this point in time. It may be surprising for some to know that interferon is a cytokine. Cytokines are very small molecules which are messengers for the immune system, that is, they activate the immunresponse to viruses, allergies etc. There are lots of cytokines and they are classified into different groups depending on their function - interferon is just one group, interleukins are another group and so on. Since cytokines are released into the body by the immune system following illness or stress this theory would suggest that at least some forms of depression are caused by an immune response.
How do the above theories fit in with interferon induced depression? With regard to the Cortisol Theory the author informs us that interferon has structural and functional similarities to one of the hormones in the HPA axis and might ultimately influence the production of cortisol. With regard to the Neurotransmitter Theory there is some evidence that both serotonin and noradrenaline levels are lowered as a result of interferon therapy. Finally with regard to the Cytokine Theory, there is evidence to suggest that interferon induces the production of another cytokine called interleukin 1, which can cause dysfunction in the hypothalamus, which is part of the HPA axis.
The last part of this article looks at the treatment of interferon induced cognitive dysfunction and depression. The authors state that they have used Naltrexone (a drug used to treat opiate addiction) with some success to treat cognitive impairment. With regard to interferon induced depression the author suggests the use of “activating” SSRI antidepressants, such as prozac when there is significant fatigue present, and less “activating” SSRIs, such as Zoloft and Aropax where fatigue is not a problem. They also mention the use of psycho stimulants such as Methylphenidate but caution that patients may become tolerant over time - the drug also has numerous unpleasant side effects in some people.
In the conclusion of this article the author suggests that all patients commenced on interferon be properly assessed for depression prior to treatment and that they be continually monitored for cognitive impairment and depression throughout treatment. In the eight years since I was diagnosed I have only once been assessed for depression and that was part of a general assessment. I am not aware that as yet it is a standard procedure for people being commenced on interferon but according to this article it should be.
Hepatitis C Virus (HCV) is not classified as a sexually transmitted disease (STD). In fact there is little convincing evidence that sexual contact is an important factor in the transmission of HCV. Although sexual transmission of hepatitis C is still a controversial area, it is estimated the transmission rate to be less than 1% in Australia.
In the literature when HCV is sexually transmitted it appears to be only through blood-to-blood contact. This emphasises the need for safer sex practices where there is a risk of blood-to-blood contact during sex eg. when there are cuts or sores around the genital area or STDs with genital lesions eg. genital herpes and also during sex that may involve broken skin. Sexual transmission is negligible except in cases of sexually transmitted diseases with genital lesions. Menstruation is also a factor and safe sex practices should be used at this time. Remember that a condom or a dental dam will only protect the area that it is covering, so if blood is likely to spread to areas that are not covered by the condom or dental dam, it may be better to just abstain for this time as well as two days preceding and the two days following menstruation.
Where the prevalence of HCV infection is higher in people living with HCV positive partners than in the general population it appears that in these cases the transmission is more likely to have occurred via sharing toiletry articles such as toothbrushes, razors and nail clippers etc. In the Australian Family Physician (Vol. 24 8th August 1995) I read that “Among Australian born patients there was no transmission of HCV to their regular sexual partners when the cases that had shared the same needle were discounted.”
We read over and over again that promiscuity plays a part and that it is more likely for someone to contract HCV if they have “numerous” sexual partners. This is because having sex with “numerous” partners is thought to increase the chances of contracting STDs such as herpes, gonorrhoea, syphilis etc. These and other STDs increase the likelihood of blood being present and therefore gives HCV the scenario that it needs to pass from one body to another.
Matthew Dolan in his book (The Hepatitis C Handbook.1999, pp 61) writes that “it is important to stress the overwhelmingly blood borne nature of HCV and apply common sense. If blood-to-blood opportunity exists during sex, then the likelihood of transmission will be much higher than if it does not. In other words “traumatic sex” is a risk factor, while what one doctor referred to as “gentle marital sex” (sic) is not. If sexual transmission was a common route, then many millions more people would have become infected. Given the fact that this virus has been present since the 1940s, a routinely viable sexual route of transmission would have yielded population infection rates of at least 50% or higher in the general population by now.”
Furthermore I would like to note that in many studies of couples who have been together for many years the incidence of sexual transmission has been negligible. I think that the key lies in knowing your own body and being aware of the factors, and if you don’t know your sexual partners (like so many of us don’t) then use safe sex to protect both yourself and them from any form of STD transmission, thus further minimizing the transmission of HCV in the general community. So here’s to happy healthy bonking folks.
In my last instalment I said I was looking forward to good health, having completed the heavy dosing period of my treatment. I am happy to say I am finally feeling well, although I did get a lot worse before I got better.
I had a short period of feeling better soon after cutting back from the daily interferon doses to 3 times a week. The nausea lessened and I felt I had a bit more energy. However this did not last long and I soon found myself feeling extremely anxious and short tempered. The nausea was ever present, sleep was becoming even more evasive, my hair started falling out and I found myself short of breath most of the time.
On cutting back from the heavy dose my visits to the hospital were also reduced to once every four weeks. By the time I went for my next appointment I was feeling extremely agitated, something that was noticed by pretty much everyone around me. I had blood taken as usual at this visit and 2 days later I had a call from the research coordinator from the RAH. My blood tests had shown that my thyroid had become over active and this was the probable cause of my more recent symptoms.
Now an over active thyroid is a condition I would not wish on anyone. I was speeding up, both physically and mentally. At first I felt like I was getting some of my cognitive capacity back as I began to think a little clearer after having two months of interferon induced fog. This would have been fine if I had continued to feel mentally clearer, however confusion once again took hold and as my mind got faster the anxiety and temper became more intense. I found myself getting extremely annoyed over the most insignificant things. I became dyslexic (not good when you have a job where you are reading almost all the time), started having panic attacks and just didn’t feel like Heidi anymore. It was as though I had a mental illness as no amount of rationalisation could control what was happening in my head.
Having the problem diagnosed helped a little as it gave a reason to the way I was feeling. Now it had to be treated. I was told I would have to take medication to reduce the thyroid activity and that I should only need it for about three months. With the way I was feeling this information didn’t go down too well. I was having real problems dealing with change of any kind at this time and wasn’t sure if I could cope with even more medication. I also needed to have blood tests weekly to monitor how my thyroid was responding to the medication.
I decided to take the medication and see if it was going to improve things for me before I just gave it all away. Fortunately it did and I am finally feeling much better. I’m still getting tired, mild gum infections, a slight headache at times and my patience is short, but all these are just minor irritations compared to what I have been through. I have now reached half way through the treatment and am feeling confident that I will make it through to the end.
In good health, at last, Heidi
I am writing in response to Doug Mellor’s comments in your recent edition of the Hep C Community News in which he alludes to an incident of discrimination occurring during an admission at Flinders Medical Centre (FMC).
While I am not in a position to comment on his particular experience, I was disappointed at the implications made that FMC discriminates against Hepatitis C positive clients. My role in the hospital as Liver Transplant Coordinator and Interferon Educator, means I work closely with Hepatitis C positive clients, and a dedicated team of people who work hard to ensure a high standard of care and up to date treatment options are available for this client group.
Personally, I value positive working relationships between health care providers such as FMC and community support agencies such as the Hep C Council, as links such as these will only help to promote progress in the areas of Hepatitis C treatment and management.
I feel it is unfair and inappropriate to publish assumptions about the quality of care given to Hepatitis C positive clients at FMC. It certainly does not help to strengthen relationships between organizations, and these comments may cause unnecessary stress and concern for those currently being treated at this hospital. It potentially may also prevent people from seeking important medical care at this hospital.
I would be more than happy for this letter to be published in your next edition of the Hep C Community News.
SA Liver Transplant Coordinator
Thank you for your letter dated 5th January, in which you outlined your concerns regarding comments in our regular column From Doug’s Desk, published in Hep C Community News Issue 11.
I understand this could be a very sensitive issue for you as Liver Transplant Coordinator and Interferon Educator at Flinders Medical Centre (FMC). Doug’s comments were relating to his own personal experience during biopsy, not as a general comment on the quality of care to HCV positive clients at FMC. I believe Doug’s comments in regard to discrimination were specifically about his experience and were not meant to imply that all HCV positive people are discriminated against at FMC.
I personally consider it’s important to publish both positive and negative experiences. Whilst Doug expressed concern about his recent experience he also gave comprehensive suggestions on how he and others could avoid the same situation. Rather than discouraging anyone from seeking health care, I believe an awareness of one’s rights and expectations of services can open the pathways of communication and avoid unnecessarily stressful situations occurring.
Our newsletter team also recognises and appreciates the benefits of cooperation and support between the workers in this sector and we actively strive to promote this. In the past Hep C Community News has been very supportive of hospital initiatives and has highlighted information on new and continuing trials, treatments and services available through FMC and other service providers. We endeavour to publish a blend of service information along with personal perspectives and informative feedback from individuals.
The workers on the newsletter are a very committed group, who take their responsibility seriously. We give our time free of charge, to provide information and a forum that allows for many views and experiences to be shared. The content of the newsletter does not necessarily reflect Council opinion.
I appreciate you taking the time to express your disappointment and will publish your letter along with this reply in the Autumn 2000 edition of Hep C Community News.
Editor: Hep C Community News
Yesterday 8th December 1999, I did my first ever positive speaking engagement at the W.E.A. in Angus St. Adelaide. I’ve decided to write of my experience so that others may feel inspired to maybe give it a shot. I had already done a course on Positive speaking with the Hepatitis C Council S.A. Inc. which, despite being emotionally damned difficult, I found to be one of the most empowering things I have ever done for myself.
I knew about the engagement for a few weeks before it occurred and I actually surprised myself by being completely calm and in control of my emotions on the day. We rocked up at the W.E.A. at around 2.00pm. and I sat in on an information session for a couple of hours before I spoke. Still no nerves. I however did hear a lot of questions asked by the people who were present that I really wanted to answer, but it wasn’t my turn yet so I had to just keep silent. Then we all had a 10 minute break and it was my turn. I sat on a chair in front of 10 complete strangers and looked at them and then I started to talk.
Initially I was surprised at how calmly and clearly I was speaking to them and as I recounted my story about my life and the impact that HCV had on it, my family and friends, I started to feel really good about the whole thing. Then I got to a bit about my son and felt this emotion rising and for a minute there I thought, Oh shit I’m going to cry, but I didn’t which was one big relief. I spoke for around 20 minutes I think. Then I told the people that they could ask questions if they wished. Hey they didn’t ask anything that I couldn’t answer. I was feeling good and in complete control. My clothes however were just a tad damp from sweating and I did notice that my palms were quite sweaty. It seemed that no sooner had I started than I was actually walking out of the room with my mission completed.
Myself and Vanessa who works at the Council sat outside and read the evaluation sheets about how the people had felt about what had been said. They said a whole lot of really nice things about how I had been relaxed and how they had felt comfortable asking me questions. Someone even wrote that they would like to listen to me again. I went home, back to my life, with a big smile on my face, feeling like I had really achieved something good.
Yeah. Positive is the word, for everyone.
I would have missed out. Missed out on meeting the most wonderful, caring and supportive human beings. People at the Hepatitis C Council. I want to thankyou all from the bottom of my heart. Living with Hep C can actually have the most beautiful and positive “side effects”.
The Australian Hepatitis Chronicle is a publication of the Australian Hepatitis Council National Hepatitis C Education Project. The Australian Hepatitis Council is a national peak organization with its membership comprising state/territory based Hepatitis C Councils.
The objectives of the Australian Hepatitis C Councils are to:
*Represent at a national level those affected by chronic viral hepatitis and coordinate a national community based response.
Contribute to the development and implementation of national policies on chronic viral hepatitis.
*Promote awareness of chronic viral hepatitis at a national level.
*Contribute to a national focus for care, treatment and support, and prevention education programs in line with relevant national polices and procedures.
*Develop and coordinate community based national projects.
*Assist member organizations by providing a national network/link for education and training resources and coordinate the dissemination of state and territory produced resources.
*Address discrimination and promote equitable provision of comprehensive services for people affected by chronic viral hepatitis.
*Represent its members at national and international forums.
*Promote medical, scientific and social research into chronic viral hepatitis.
The Chronicle aims to inform members and agencies of the ongoing activity of the Australian Hepatitis Council National Hepatitis C Education Project. It invites contributions from members and non-members who wish to contribute to the Council’s goals and objectives.
The Chronicle is published four times a year (usually March, June, Sept & Dec). The Chronicle is not currently indexed, but will be in time. The Chronicle is distributed free to members and others on request. Requests for bulk copies may incur a postage and handling fee.
The closing date for receipt of contributions is 6 weeks prior to publication.
Women Living with Hepatitis C
Chief Investigators: Professor Sandy Gifford, Deakin University, Dr Gabriele Bammer, Australian National University
Associate Investigators: Dr Cathy Banwell, Ms Mary Beers, Ms Jude Byrne, Dr Wendy Holmes, Dr Marion Kainer and Dr Mary O’Brien
Summary of study
Background: To date little is known about how the hepatitis C virus (HCV) affects the lives of women. Research on the impact of related diseases such as HIV/AIDs strongly suggests that the economical, emotional and physical impact of HCV on women is likely to be different from that on men. Preliminary studies, undertaken by our team at Deakin University, suggest that access to accurate information and support services is sometimes difficult for women living with hepatitis C. This is further complicated by the fact that many women also have a history of injecting drug use (IDU), which coupled with the stigma generally associated with chronic illnesses such as HCV, often impacts negatively on women’s families and employment.
Aim: This study will identify the health and social needs of women who are infected with hepatitis C. This information will be used to better inform policy makers and service providers to ensure that education and support services meet the needs of women living with hepatitis C.
Research Methods: The Women Living with Hepatitis C Study will take place in Melbourne, country Victoria and Canberra. A total of 600 women will be asked to complete a questionnaire about; the social and personal impact of HCV relationships with partners and families; the availability and accessibility of appropriate treatment, care and support: and Women’s concerns about their reproductive health (eg contraception, menopause, pregnancy)
Recruitment: While the survey will be self administered, different strategies will be used to access women who have different experiences. Women will be invited to participate from the Hepatitis C Councils in Canberra and Victoria, liver clinics, needle and syringe programs (NSP) or treatment centres in Canberra and Melbourne, and Haemophilia Treatment Centre
Questionnaires will be distributed using a range of strategies including membership mail outs, or advertising through relevant newsletters. Women attending NSP, treatment centres and liver clinics will be recruited ‘on site’ where a researcher will be on hand to distribute and/or collect questionnaires.
Findings:The findings will explore HCV positive women’s experiences of living with HCV, and will further investigate relationships between women’s IDU status, time since diagnosis and infection. A summary of these results will be distributed to the community groups who work with women living with HCV and will be published in various magazines relevant to hepatitis C networks, in the mainstream press and on peer reviewed scientific journals.
Although researchers are recruiting women from Vic and Canberra interested women from SA are welcome to participate. Please contact Maria Karvelas, MPH. Project Coordinator, Women Living with Hepatitis C Study, School of Health Sciences, Deakin University Melbourne Campus, 221 Burwood Highway Vic 3125.
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CNP at HepSA
Full range of free needles and syringes, plus water and filters for sale.