Louise

Louise

Louise trained as a lawyer and, through personal and professional experience, has become an in demand health policy consultant and advocate, contributing to improvements in the care for people with HIV for about 25 years. She became involved in research and policy development as a patient after her HIV diagnosis in the 1990s, when there were no effective treatment choices for HIV/AIDS patients. Louise works with federal and provincial governments, community organizations and other advocates to improve patient access to HIV treatments and increase access to liver transplants for this group when needed. Louise is also actively involved as a health and policy advocate and consultant for various organizations in the areas of women’s health and cancer. She believes that building trusting relationships between researchers and patients/caregivers is key to creating effective partnerships in research, and that a successful partnership is where both partners have a positive experience in working together to move the research forward.

Patient

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Another thing I learned about research was fascinating was certain racial groups - and this is probably because - maybe because, for sure that we were dealing with a stigmatized disease, but there are a lot of stigmatized diseases now. All mental health is still very stigmatized. Even some people don't want other people to know they have cancer. There's lots of things people don't want people to know they have. 

And what we learned was, for instance, in engaging patients, one of the things that a lot of the researchers wanted to do, in good faith, was to use people like yourself, like people who are actually asking the research questions, from the populations of the people who they were engaging. In some cases that was the right thing to do. Women are happier to talk to women. In general. And you know, Francophones would want to speak in their first - so there are some places in which that was really the right thing.     

But what we learned was, in some cases it was the wrong thing. Because if you come from - for instance let's say your home country is Rwanda, you're in Canada, you don't necessarily want - and it's a small community. So if you have a Rwandan person asking you the questions, they probably know everybody you know. And they might know your family back in whatever country it is. I'm using Rwanda as an example. It could be anywhere. 

And so we learned that in some cases people actually preferred not to be asked questions by someone that was from their own communities. So it's really - research - I mean is so complex. The assurance that you'll get the best research results you can and both obtain participants and retain participants, it's profound - it's really profoundly complicated. Much more than I think people realize.

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So there's all kinds of complexity to trials. And I think it's unfortunate that researchers don't engage more patient groups and patients to look at their trial design. In fact, of course, to develop the trials. But even to look at the trial design they're proposing, to ensure that they will get both enough and a diversity of populations, because that was of course another thing I learned about research. Most of the research in Human Immunodeficiency virus (HIV) was done on gay men. Well, I'm not a gay man. So I would look at the research results and there'd be, like, four women in a trial of 3,000 people, who knows? And I knew that they didn't have the - they would draw these broad conclusions, you know. This trial is good for people with all CD4 cells (i.e., white blood cells) above 300. No it wasn't. No it wasn't. You don't know that. It was good for all the gay men age this to this in the trial. Right? We knew as women that they didn't have a clue. And in fact we always felt that we were being over treated because when you're - you know, a woman of five feet, a hundred and some two pounds and the man beside you is six foot four and 200 pounds and he's getting the same drugs, you know that's not right. We knew it wasn't right. Some of us actually self-medicated and dosed down stuff to the horror of our doctors. 

 

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I think it's the exchange of ideas with a multitude of stakeholders, and even other patient groups' stakeholders that have different diverse perspectives. I love that exchange of ideas. And in general, oh, you know, it's always exceptions to every generality, I find it really - those relationships are really exciting and very respectful and fun. And you know, I - yeah, I know a lot of fabulous people from all the stakeholder groups as a result of this work. And they're bright and they’re interesting and they're hardworking and they care. And that is what more could you want?

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Well I measure impact in a few ways. And I - this is part of what I teach also at the boot camp ... how do you know you've had a successful partnership? Well one is you actually stay for the whole project. If your partner's actually stick and stay for the whole project something good happened there. If you're wanting to work together again. That to me is a good partnership. And then I mean outside of that, that's sort of internal validation, then you want some external validation, so I think if other people, if word gets around, you know, work with these people. They're cool, then that to me is kind of also an impact that you'll have in the longer term. You know, do people say, is it part of the buzz you know that, oh, they're cool to work with and they understand this stuff.


 

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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.