As an advocate for quicker access to HIV treatments by shortening research trials, Louise became involved in research as a patient partner

Transcript

I guess I got involved in healthcare issues, policy issues 25 years ago. And I was diagnosed with HIV, and this was in 1994. And we had no treatments for HIV at that time, so I was told I had about two years to live, and that was it. So I began to learn a lot about the disease itself, and found myself a researcher in New York, actually, Canadian who was researching in New York, and he was engaged in the research of what turned out to be life-saving therapies for people. At that time they weren’t out everything. The trials hadn’t been completed yet. So basically what I did was I spent a lot of time with him determining how to keep me as healthy as we could so that I would actually be alive by the time the drugs came. Although we didn’t know exactly when they would. 

So that was interesting. We tried a few little research tricks of our own. I mean at that time everything was experimental for people with HIV, so I remember that once he wanted me to take – everybody was taking antibiotics to try not to get pneumonia, but they were very, at least 50 percent of the people with HIV were allergic to the antibiotics. So in the United States they developed a way of desensitizing to the drugs, but no one had done it in Canada. So I brought the protocol to Canada and gave it to my doctor who said, oh I can’t do that, liability, liability, and I said, well if I’m kind of dropping dead anyhow, so I don’t think this will be a big surprise to anybody. So she actually did fill the script, even though this was very much on spec from her perspective and I did desensitize to the antibiotic and was able to stay on it, which was very fortunate. It was one of the many things, I think, that helped me stay well.

So in a way I kind of learned about the limits of the abilities of doctors to prescribe drugs that were not – or processes or research ideas in a way, just through my own one-on-one experience of kind of being an […] one on a number of things in Canada that nobody here had tried. And that was because I was fortunate enough to go to the United States where they were really leading the parade on the research.

So, that was my start of my work to get these drugs into Canada. It became clear that our health systems were not at all prepared for what we needed in terms of getting these drugs on the market as quickly as possible. And part of the problem with that was that they said the research wasn’t going on long enough. 

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