Almost everyone in Canada – and I dare say in many other counties too - who has an interest in HIV and Hepatitis C treatment and more will be familiar with the work of CATIE. But for those who aren’t, here, from their website, is a description of what they are famous for:
“CATIE is Canada’s source for up-to-date, unbiased information about HIV and hepatitis C, connecting people living with HIV or hepatitis C, at-risk communities, healthcare providers and community organizations with the knowledge, resources and expertise to reduce transmission and improve quality of life.’
CATIE has been around for more than twenty years, growing larger and evolving over the years as the nature of the epidemic has changed also. From very small beginnings it has grown to a respected and far-reaching organization with almost forty people on the staff. But who knows how and why it started, or what it was like in those early days?
To get the answers, PositiveLite.com editor Bob Leahy talked to someone who was there - Sean Hosein, one of CATIE’s founders, now serving as its Science and Medicine Editor.
Bob Leahy. Hi Sean. Tell me how you first became involved with learning about HIV
Sean: I came of age in the early 80’s and I was fascinated by what was then being called the “gay plague” by the media. They were making ridiculous statements in the media, utterly ridiculous stuff. The reports were sensationalist, very scary and they didn’t make sense in some ways, making outrageous claims based on a limited set of data.
I was going to school at the time, first in high school and later to university, and I would go to the university library and it was easy in the first seven years of the epidemic to learn about the disease in that all the medical reports that came in the medical journals were very, very descriptive. And in the early years too, before scientists were certain, there were all these crazy ideas about how people became infected, and it made for fascinating reading.
At the same time – the mid to late 80s – we had a lesbian and gay rights movement that had developed, particularly here in Toronto, and some of the men and women who were involved with that also began to see a need for an AIDS organization, because people were dying and not much was being done. (I won’t go in to details why that was – that’s been covered well by the movie “And the Band Played On”, the play “Angels in America” and the recent documentaries about AIDS activism in New York and San Francisco.) So I got together with some like-minded people, and my part was to supply information - these were incredible people fighting for their lives and I would help them; I was a patient advocate for a while and then I saw a need to help educate both doctors and patients about this rapidly moving field. So we produced a bulletin that we would give out to doctors and patients in Toronto.
When was that and how did that happen exactly?
Well, in 1985 or so I was writing in a newspaper called Rites – a lesbian and gay newsprint magazine that doesn’t exist anymore - about discoveries and possible avenues in HIV-related research at the time. And the people who formed AIDS Action Now! (AAN!) around that time were my friends. I didn’t go to the initial founding meeting of AAN! but I did join a few months after - that was in 1988 - and I joined the Steering Committee where I sat for several years. In 1989 I started to produce something for AAN! which we initially called “AIDS Update” but we later called it “TreatmentUpdate” and it was Canada’s first bilingual publication about treatments for HIV.
The cover of the first issue of "AIDS Update", editor Sean Hosein.
We sent it to doctors here and in Quebec, to people around the country. I just reported what was going on in the medical journals in different fields related to research about how HIV caused problems for the immune system and the discovery and testing of treatments for HIV. And it became clear that a lot was happening, there was a tremendous amount of research, but there weren’t enough clinical trials of drugs. So we advocated for getting drugs that looked promising in early clinical trials in other countries, in to Canada and available on a compassionate basis for people with HIV who were very ill. We advocated for setting up a clinical trials network that would test these promising drugs and also for a knowledge broker organization that would help distribute the knowledge about these emerging treatments to people.
Things were done in a very haphazard manner, though, back then because we rushed from one emergency to another, all done with volunteer labour. We naively felt that there would be a cure after a few years. You didn’t know who was going to get infected and die. The late George Smith, a brilliant intellectual, gay rights activist and co-founder of AAN! and CATIE said that it was like living in London during the Second World War, during the Blitz, so you were on adrenalin all the time. It was at once exciting but there was a lot of danger in the sense that your friends could die at any time from some mysterious cause. We have lost so many brilliant and kind people to this damned virus.
So those were the AIDS Action Now! days. I’m guessing that we’re at the point in the story where CATIE – or what was to become CATIE - was about to be formed?
Correct. The people who had the core idea for CATIE back then were Alan Cornwall – he was a lawyer, George Smith a researcher at the University of Toronto, the women’s health activist Linda Gardner and myself. They mentored me a lot. I was also helped by many doctors both in the community and at hospitals.
What did you do about money?
In 1990 with funding from the Trillium Foundation (an Ontario-based charity) we got a grant to establish the organization we now call CATIE. It only had one staff member at the time, the project director who is now a professor at York University; his name is Eric Mykhalovskiy. I was working with CATIE right at the beginning as a volunteer.
Those days were really chaotic. We worked then mostly in the city of Toronto but then as the epidemic grew and grew we realized there was a need to expand our services to other provinces. I wrote a grant proposal that the federal government kindly funded to expand TreatmentUpdate’s distribution and reach across the country and to pay for translation.
The Federal government funded us for several years and as they and everybody were seeing we were having an impact, helping people with the information they needed and so on, our funding increased over the years.
I was initially on the board of CATIE but I had to step down after a few years before I could become a staff member.
Where did CATIE’s interest in prevention come from?
Although we were initially a treatment organization, CATIE always had an interest in prevention in that it encouraged safer sex but that was not our primary focus back in 1990. At that time, funders were primarily interested in prevention work and we had to argue that providing treatment information was a form of prevention. However, as the epidemic changed and we saw the Lazarus effect with people coming back to health, we took on more health-related issues for people living with HIV.
CATIE had always been looking at health issues from a holistic perspective, not just treatment-related things, so it was not a stretch to explore information about other sexually transmitted infections that facilitate the transmission of HIV. These infections include germs like herpes, gonorrhea, syphilis and so on. However, our focus was on improving the health of people living with HIV. We also did a lot of capacity building work with AIDS Service organizations which helped us to understand how prevention and treatment really work together. In the mid-2000s people began to raise questions about the ability of HAART to reduce infectiousness. At first these were very dry discussions. We officially expanded our mandate to include all aspects of HIV prevention and treatment in 2008. It was very good timing for us because the biomedical science of HIV transmission, prevention and testing was about to explode and we already had a solid foundation in knowledge exchange through our work in treatment.
We had always done limited work on Hepatitis C and this was officially added to our mandate a few years ago as well.
Through all this – at least in those early years, Sean – you had a very personal connection to HIV, didn’t you?
I was lucky in that I came of age when safer sex had been invented and so I was able to protect myself but my partner was older than me. So we always suspected he was infected, but we took precautions and then when the test became available we did get tested. He was positive. And you know it’s one thing to guess that you’re infected and another to see it in black and white. It was very devastating for him initially. You must remember that back in the dark ages of the 1980s there was no effective treatment and studies from that era found that people would die a few years after the diagnosis. Despite that grim forecast, we did all the things we could to keep his immune system going well and we did a very good job of that until the last six months of his life. He passed away in November, 1994. It’s devastating to lose your spouse. We were together for ten years. I am deeply grateful to the many doctors, scientists and friends who helped me with George’s care.
Did that impact the passion you have your work?
I think his death just encouraged me to work harder. There are still many people living with HIV, there are long-term health issues that they will face. Also, as you noted earlier, our mandate has grown so for me there is no shortage of things to do!
Our work today, which has expanded into the spread of HIV, hepatitis C and sexually transmitted infections; these are all important. I get letters and emails all the time from people, people living with HIV, hepatitis C or STIs, who talk about some article I wrote and how much a difference it made in their health and it’s really moving and wonderful to know that not only am I making a difference in somebody’s life, but so are all the other people who work at CATIE – who do work in translation, editing, producing and maintaining our website, distributing our publications and so on — to make that information accessible. Our executive director Laurie Edmiston and my boss Timothy Rogers encourage constant learning and have helped to maintain a nurturing and stable environment so that myself and others can thrive at CATIE. We also have many doctors, nurses, pharmacists and scientists across Canada and around the world who provide their expertise in reviewing our work and for that we’re very grateful.
What does it feel like to be one of the founders? Does it give you pride?
Having helped found this organization that once occupied a tiny office at 517 College Street (Toronto) that could barely hold a desk and a filing cabinet, a computer and a printer, go through many changes and growth and now reaching its full potential is really wonderful to see.
Now I’m so proud to see how far the organization has come.
Photo of Sean Hosein courtesy Matthew Watson.