The Hyatt Regency, Sydney, Australia, 16 - 18 March, 1997

Session 3C, Monday, 17 March, 1997, 4:00 pm - 5:30 pm

Public Health: Prevention & Community Support

I would like to thank the conference organizers for inviting me to speak. I hadn't even expected to get to the conference, let alone be asked to present. I would also like to thank the Canadian Red Cross for paying for my flight and conference fees. I am here to speak about my experience as someone living in Canada with Hepatitis C acquired through the sharing of injection drug equipment. I am honoured to have an opportunity to share a bit of my personal story and some of the work that I am involved in in Canada. While I imagine that there are needs of Hepatitis C Virus-positive (HCV+) people living in Australia that are still unmet, one of my primary reasons for wanting to be at this conference is to gather information. In some ways Australia is light-years ahead of Canada (or perhaps North America). No level of government was prepared to make any funds available to me in my efforts to get here. I approached the City of Vancouver, the Province of British Columbia, and the Canadian federal government. Hepatitis C is a very political issue in Canada at this time.

The Red Cross in Canada has found themselves in the middle of a very serious legal situation around the transmission of HCV to recipients of blood products and transfusions. While the blood banks are now tested for HCV, a few years ago the Canadian government ordered an investigation into the situation, called the Krever inquiry. It is my understanding that due to the implication of some government officials, the report resulting from the inquiry was not released for quite some time. At this point a number of transfused HCV+ Canadians are involved in legal action against the Canadian Red Cross. Obviously the Red Cross stands to gain from improving their public image by being seen to provide support around HCV issues. The injection drug using (IDU) community in Canada is not receiving any government support at this time for either education or support regarding HCV, so any assistance we can get is also greatly appreciated. While some of the needs are the same for all HCV+ people regardless of how they acquired the virus (such as treatment options and support services), there are also some needs specific to the IDU community.

The first time I shared needles was when I was 19, in 1982 in San Francisco. It was also the first time I used needles. I don't know if that was when I became infected with HCV - I have had lots of other experiences sharing needles. I think I first began experiencing symptoms in 1987. It was then that I began feeling overwhelming fatigue and depression as never before. I was diagnosed HCV+ in 1992. At the time I was working at an AIDS project in a Community Health Centre in Toronto. The nursing staff and my doctor were very familiar with issues around HIV/AIDS, drugs and poverty. A lot of our work was with street-involved people. There was, however, very little information about HCV. During my work at the AIDS project I was involved in establishing a needle exchange program, anonymous HIV-antibody testing sites, a support group for prisoners living with HIV/AIDS, a drug users' union called Citizens On Drugs (C.O.D.), the Toronto Raver Info Project (TRIP) providing harm reduction education and support in the rave community, and the Ontario Harm Reduction Coalition. Through my harm reduction work I came into contact with Dave Burrows, and was able to get hold of some information from an HCV support group in Australia. I began a campaign to collect as much useful information on HCV as I could, especially in relation to IDUs, and began to educate myself and the staff at the Health Centre. In 1995, around the time that I was beginning to look at the information and support available in Canada, I moved to Vancouver.

Through my initial contact with the Hepatitis C Survivors' Society (HeCSS), a group primarily made up of HCV+ transfused, I became aware of some of the stigma associated with HCV. Because of my previous experience with harm reduction and drug users' groups as well as my own drug use, I was already familiar with the stigma around using. Through my work in the HIV/AIDS community, I was aware of the issues of stigma around that particular virus.

Because I identified myself as a drug user and having become HCV+ through the sharing of injection equipment, I faced initial resistance to my involvement in the Survivors' Society. I think they were afraid of some strung-out junky making a mess on their carpet or something. The situation reminds me very much of the early days of the HIV/AIDS epidemic, where there were some people considered to be "innocent victims," and others who had made "lifestyle choices" and therefore deserved what they had coming to them. Printed educational material about HCV in Canada also shows a lack of understanding or sensitivity to the concerns of IDUs. The HeCSS pamphlet talks of "drug abuse," and a pamphlet put out by the Canadian Liver Foundation and the Canadian Red Cross says that the "only way to avoid being exposed to the virus...is not to use injection drugs."

My Hep C infection has become increasingly significant in my life over the last year and a half. A major symptom is overwhelming fatigue, accompanied by frustration with being unable to do as much as I would like to. Along with the fatigue is an occasional inability to concentrate or stay focused, and along with the frustration can be feelings of depression and hopelessness. I have also dealt with burn-out in my work. Many of my friends have died, and I have lost most of my peer group to either AIDS or over-doses. This is a big part of the reason why I left my job in Toronto and moved to a new community. When I first got to Vancouver, I was collecting Unemployment Insurance. When my UI ran out, I went on to welfare. I have managed to get onto a medical welfare program, so I am not required to fill out job-search forms, but I still have to go to my doctor every three months to get forms filled out for extra money that is supposed to cover my transportation costs as well as vitamins and a high protein diet. This still only gives me an income of $690/month, which doesn't come anywhere near meeting my needs. My rent alone is $350/month, and I don't have enough money to buy the food, the vitamins and herbs I need to maintain my health or treat my infection.

There is a sense that in trying have my needs met, I am trying to scam something. This is both external and internal, and for me is a major component of my illness. Internally, I find myself questioning whether or not I deserve to have my needs met - there are issues of self-worth and self-esteem. "Who am I to ask to be taken care of? There are others who are worse off or more deserving than I am," etc. I have also encountered this attitude among the supposed care providers in the community. In my search for information and support in treating my Hep C, I was referred by the local needle exchange program to the Street Nurses, who answered the phone with a snarly "who are you!?" I told them my name and that I was an HCV+ drug user. I was told that someone would call me back, but this never happened. Maybe if I had been representing some important agency I would have been worthy of a bit of their time.

All of this ties in to my experience of living with Hep C, and my personal history. I grew up experiencing violence from my family as well as from my peers in school. I have also lived on the street, and experienced violence in jail. I think that this has had a great deal to do with my sexuality, and much of my drug use has stemmed from a sense of not being good enough as I am - a drive to be different or to change my state of consciousness. Everyone has their own reasons for using drugs - I am not suggesting that all drug users are dealing with the same issues as me. These are just some of the things I am facing in my attempts to heal myself on a number of levels. In fact, much of my insight into these parts of myself have come to me through the use of psychedelic drugs. Ecstasy and LSD have been sources of my own personal therapy, and marijuana has played a very important role in stress reduction. In the past, my use of a wide variety of drugs, including heroin, has been to avoid feelings of fear and pain. Another important role that my drug use has played in my life is in giving me the experiences I need to do the harm reduction work that I do, including support and education around HCV. In many ways, using drugs has been my way of meeting my needs.

Recently I have made a decision to take a year off of using drugs (although I am still using caffeine and sugar). I have been seeking sources of support that are understanding of my holistic approach to my health - physical, emotional, psychological and spiritual. As there is currently a real lack of knowledge in this area in Canada, much of this support comes from my partner, Brian. Many other people, particularly those involved in Western medicine, look at such holistic approaches with raised eyebrows, bringing up my fears of being judged as "flaky." Brian is a certified bodyworker, and I have been studying accupressure. Through this experience I am developing an understanding of the connections between body symptoms and emotions. I have also been learning about Chinese Five Element theory, where each organ is associated with a different energy meridian. In this system, a liver that is out of balance can bring up emotions of anger and fear. I feel frustrated by the lack of compassionate support available to me. I feel that I am often not taken seriously by my doctor, who has turned down my requests to be referred to a liver specialist because my ALT levels are not high enough. It is my understanding that liver function tests may not be a very clear indication of what effects HCV may be having on my body, and I am also concerned about fluctuating white blood cell and platelet counts. I have begun going to a doctor of Traditional Chinese Medicine (TCM), in part because Western medicine hasn't yet offered me any treatment options that I am interested in. Leaving one of my early appointments with the Dr. of TCM, I was struck by the somewhat surprising thought that I am not yet ready to be healed of this virus. On deeper exploration of this idea, I have come to realize that what I am needing is to be cared for. I see my Hep C infection as providing me with an opportunity to heal myself on a variety of levels, and it also motivates me to do some very needed work in the areas of support and eduction about HCV for IDUs. In addition to feelings of frustration at the lack of support available to me, I also feel a sense of pride in my position as an initiator or pioneer in this area in my local community.

Other than the herbs that have been prescribed by my Dr. of TCM to boost my liver functions, it has also been recommended to me by a couple of different Herbalists and Naturopaths to use Milk Thistle, vitamin C in large doses, vitamin E + selenium (anti-oxidants), and beta-carotene. I try to eat high-protein foods, and although I find this rather difficult to manage, I have also been told to reduce the amount of oil in my diet. I have stopped drinking any alcohol (about a year and a half ago), and my favourite prescription comes from the Dr. of TCM - to eat chocolate! Some people have speculated that this may be due to the high magnesium content of chocolate, but when I asked the doctor, he said that the glucose was good for my liver. Stress reduction is another very important part of my health plan. I have tried a bit of meditation, and would like to be doing more, but I find it hard to make the time to just sit quietly. In my day-to-day activities, I often find myself feeling quite tired. When I look around me at all the restaurants, bars and shops, I wonder why there aren't any "nap cafes?"

In Vancouver there is an organization called Friends For Life, that has come out of the HIV/AIDS community and provides support for people living with life-threatening illnesses. They have included Hep C in this category, and while there are currently only a few of us taking advantage of the services they offer, I am able to go to their centre for free body work (once a week), counselling, art therapy, yoga, meals, and a number of other services offered by community volunteers. In accessing their services, again I have had issues of deservedness come up for me - the whole hierarchy of illness thing, where I feel that there must be people who are more in need or more deserving of support than I am. Also, the province of B.C. has just recently announced a plan to provide a financial top-up to enable people living with catastrophic illnesses and who are on some sort of disability or pension program to more easily pay their rent. It is still unclear as to which illnesses they will include in their definition of catastrophic illness. With Interferon (for those who take it) costing $500/month, HCV+ people with limited incomes could certainly use the support.

While I see a need for unity among HCV+ people, particularly in terms of treatment options and support services, there are also some particular needs that are specific to those who acquired the virus through transfusions or through sharing injection equipment. The first priorities of the HeCSS in Canada have been to clean up the blood supply, to participate in the Krever commission, and to organize a class action suit. Their next plans include to provide support for HCV+ people, to produce educational materials, to initiate a media campaign, and to put out a regular newsletter. I have been asked to sit on their steering committee, which I see as an opportunity to address some of the needs of IDUs. I have also begun working with the Canadian Liver Foundation to coordinate an information day for the IDU community, scheduled to take place in early May. So far, all of my work in this area has been volunteer. In my fundraising efforts to get to this conference, I made contact with several community agencies, pharmaceutical companies, government representatives and health officials. While none of them, with the exception of the Canadian Red Cross, had any money available for international travel or conferences, several of them suggested that they might have funding for local initiatives. Harm reduction is a fairly new concept in many parts of Canada, and there is a particular wariness around working with populations of people who are currently using drugs. Obviously there is a need for users' voices to be heard in terms of providing peer support, and drug users' unions can play a very important role in making this possible. I will be going from here to the International Harm Reduction Conference in Paris, and then returning to Vancouver to get on with my work.

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