Time at CATIE: 1991 to 1993 (board member), 2004 to 2012 (employee)
My history with CATIE started in 1989 with AIDS ACTION NOW!—the activist organization in Toronto that created the idea of CATIE and got it off the ground. One of our early initiatives was the Treatment Information Exchange (TIE) project, which was national and included a phone-line component. CATIE originally stood for Community AIDS Treatment Information Exchange. When it became a national organization with government funding in 2000, it became the Canadian AIDS Treatment Information Exchange.
I’ve always been attracted to the idea of knowledge exchange. When I found out I was HIV positive in 1987, I started reading booklets from the United States that were filled with research data in plain language for people with HIV. It was incredibly reassuring to have that knowledge at a time when there was so little that you could do for yourself. Putting scientific information into simple language so people with HIV could participate in these conversations was important to me. At CATIE I was able to do this full-time.
As CATIE’s director of program delivery, I worked with the educators to deliver workshops and information to people with HIV. In the course of my job, CATIE began to focus on service providers, so we shifted a lot of our knowledge translation work towards them. I had about five staff in my department, and during that time I was able to streamline the “syllabus” that they delivered. I also worked on Managing Your Health, which was our comprehensive resource for people living with HIV.
Seeing through the revisions to Managing Your Health was one of my biggest accomplishments at CATIE. Working on that was very difficult. We fell behind on it and lost our editor, so I felt an enormous amount of relief when it was finally completed. I remember back in the day at AIDS ACTION NOW! we were working on what we believed would be a pamphlet for people with HIV and AIDS, and that eventually became Managing Your Health. There’s something important about it—it’s so substantial and is so tied in with the beginning of CATIE.
My own health has always been good. I was able to last a long time without treatment. I started taking meds in 1996, then stopped four years later because of side effects. I went back on them in 2004. At CATIE I was the only director with HIV, and sometimes it was hard being a woman and a person with HIV. In 2012, I started to get impatient with the science of U=U [undetectable = untransmissible] and was feeling constrained at work. People were so cautious about saying that treatment could prevent transmission. I thought, “I’m 55. Maybe now is a good time to acknowledge that in HIV years I’m actually 65, and just do my own thing around the house in my slippers with the cats.” I’ve been retired for eight years now.
Time at CATIE: 1996 to 1999
My move to CATIE was really an escape from Saskatoon, where I had been the executive director of AIDS Saskatoon. From late 1994 to spring 1996 I was on long-term disability with HIV and I was incredibly depressed, more because of heartbreak than HIV. Out of this desperate unhappiness, I decided to move to Toronto. I got a job and moved there in June 1996.
At CATIE, I was a TIC—treatment information consultant. We were on the phones eight hours a day, five days a week. We got all kinds of callers asking about treatments, side effects, complementary therapies, and so on. Many people needed peer support and counselling, but we weren’t trained as counsellors and we were forbidden to do it. Of course, we all did some of that. It was a balancing act.
I am a pastor and a theologian, and I try to live ethically. At CATIE, that was the other sort of role I had. In 1978 I was ordained as a Lutheran pastor, but I was kicked out of the ministry in the mid-1980s because I came out as gay. Despite this, I never left my faith, and everybody at CATIE knew that I was a Christian. Often people would slink around to my office and say, “Can I come in for some pastoral care?” I was the listening ear for people who were having a rough time.
When I started at CATIE, combination therapy was new and the clinical trials for AZT, 3TC, and indinavir were happening. Dr. Sharon Walmsley was running a clinical trial with that very combination, which saved my life. At the beginning, my T4 count was 14. I had some minor but stubborn infections, like molluscum contagiosum, a viral skin infection that had spread to my face. Within a year of taking treatment, my T4 count was in the 400s—well within a normal range. So, while I was at CATIE, I was tracking this improvement in my own health.
Personally, I got a lot out of working at CATIE. I had fled Saskatoon to save my life because I was in deep emotional trouble there. When I was at CATIE I would work out at the Y and I always started out on the stair climber. Most days when I got on the stair climber I’d start crying as I thought about my life back in Saskatoon. By the end of my first six months at CATIE, I was on the stair climber and realized I wasn’t crying anymore. I’ll never forget that moment. Suddenly it was like, “Oh, the world is a different colour!” The abysmal greyness and sadness and weightiness was over. Life had begun again.
Time at CATIE: 1990 to present
Aside from being the science and medicine editor, I’m also one of the cofounders of CATIE, along with George Smith and Alan Cornwall. When we started CATIE in 1990, we were working together as part of the Treatment Information Exchange. People with HIV were being neglected simply because HIV was seen as a disease of gays and drug users, who were despised by the larger society (and still are to some degree). They were being neglected, so we decided to stand with HIV-positive people and try to help them through this terrible crisis.
One of the things we found out was that doctors were having a hard time keeping up with the latest information—it was changing so fast. So, there was a need to help both doctors and people with HIV find out more about the disease, prevent AIDS-related infections, and know that treatments were in the pipeline.
Before working at CATIE, I had been writing a column called TreatmentUpdate in community newsletters since 1985. This covered HIV and potential treatments. After we founded CATIE, I continued to do this and also sat on the board for the first two years. I still write TU today, but now I write about many more topics, and I also write CATIE News articles. Back in the early ’90s, because very little was known about the virus, everything was experimental. There was a sense of urgency, as people were getting very sick and dying. You didn’t know who would be alive from one week to the next.
Now, thanks to treatment, many people with HIV will live into their senior years. Among people who know their status and who adhere to treatment, AIDS-related infections are rare. Back in the early ’90s, the goal and focus for doctors and patients was about surviving the next life-threatening infection. Now it’s about growing older. So, part of what I do is help people focus on aging well with HIV.
I think that in the next 10 years or so the virus will be brought under control. There might even be a vaccine, because right now, based on studies in monkeys, we have the first vaccine that might reduce the risk of HIV transmission by 70 percent. I’m hopeful that the next generation of vaccines could aim for an 80 or 90 percent reduction. What I’m saying is, I think my job will become unnecessary 10, 15 years from now. My hope is that I’ll be able to retire and live in an AIDS-free world.