When designing clinical trials, Louise feels that researchers should engage more patient groups

Transcript

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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