Louise Binder smiles alongside of the dedicated staff of the IGIHOZO Association for People Living with HIV/ AIDS, which is based in Kigali, Rwanda.


Rebel with a Cause


AT 62 YEARS OLD, LOUISE BINDER, THE CANADIAN TREATMENT ACTION COUNCIL’S CO-FOUNDER, IS JUST GETTING STARTED.


Louise Binder is a force to be reckoned with. Since her diagnosis nearly 20 years ago she has become known, as one writer aptly put it, as “a champion hellraiser.” “People talk about me being courageous,


but it’s not really true,” she says from her Toronto home. “What I really am is fearless. When you’re courageous, you have a fear but you overcome it. I’ve been through so much that I don’t own much fear.” In 1994, Binder learned that she was HIV


positive and was told that she only had a few years to live. This news fuelled her deci- sion to disclose her status. (“If you can speak out, you should,” she says. “Otherwise we perpetuate this concept that we deserve to be stigmatized.”) Fifteen months later, her degrading health forced her to leave her law practice and go on long-term disability.


But in 1996, with the help of a doctor living in New York, Binder started taking antiviral therapy, which was not yet available in Canada. “Drugs were starting to become very effective at keeping people alive and getting them better—but we weren’t getting those drugs,” she explains. “We had a very antiquated drug approval process that didn’t know how to balance risk and benefit in a life-threatening situation.” In response, she co-founded the Canadian Treatment Action Council (CTAC), using her experience as a lawyer to successfully advocate for revisions to the drug review process. Today, the CTAC works on an ongoing basis with Health Canada to ensure drug approval processes are revisited so that patients have timely and safe access to drugs. Binder has also been instrumental


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in ensuring that federal funding for HIV/ AIDS remains entrenched in budgets. “If our politicians don’t have vision, we need to give them vision,” she says. And although Binder believes her greatest accomplishment is giv- ing a voice to patients, it’s not all that she’s well known for. “Louise’s greatest contribution is the example she has forged for women with HIV,” says her colleague, Dr. Gregory Robinson. Her resume of achievements in the area of women and HIV/AIDS is exhaustive. In 2006, she was the plenary speaker on women and girls at the XVI International AIDS Conference—the first woman to do so. (On this occasion, when the allotted time ran out before her speech was done, she refused to leave the stage. To her, nothing—even Bill Gates and Bill Clinton waiting in the wings—was more important than women and HIV/AIDS.) She has worked with Voices for Positive Women, UNAIDS Global Coalition on Women and AIDS and Blue Print for Action on Women & Girls with HIV and AIDS. It’s hardly a surprise that she lists Nellie McClung among her role models.


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