Healthcare Legacies: AIDS Action Now

AIDS Action Now!

a black-and-white photo of two men. The one on the left has a moustache and is looking forward to the right, while the one on the right is looking to the left of the photo. Only their upper bodies are visible in the photo.
George Smith and Gary Kinsman, Toronto City Hall, May 1988. Courtesy of the AIDS Activist History Project.

George Smith and Gary Kinsman, Toronto City Hall, May 1988. Courtesy of the AIDS Activist History Project.

A black-and-white image of two men sitting in a living room. They both holding a medical device to their mouths.
A demonstration on Aerosolized Pentamidine by AIDS ACTION NOW!, Toronto. Courtesy of AIDS Activist History Project.

A demonstration on Aerosolized Pentamidine by AIDS ACTION NOW!, Toronto. Courtesy of AIDS Activist History Project.

A black-and-white photograph of a group of protestors. They are all walking in a growp along a path. Six of them are carrying signs protesting protesting Ontario Medical Officer of Health Richard Shabas and quarantines.
AIDS Action NOW! Protest, Toronto, April 25, 1990. Courtesy of the AIDS Activist History Project.

AIDS Action NOW! Protest, Toronto, April 25, 1990. Courtesy of the AIDS Activist History Project.

A group of men looking towards the camera. The two in front are both holding a piece of paper by either end.
Members of AAN! meeting with then federal Health Minister Perrin Beatty, Toronto, 1983. Image courtesy of the AIDS Activist History Project.

Members of AAN! meeting with then-federal Health Minister Perrin Beatty, Toronto, 1983. Courtesy of the AIDS Activist History Project.

The Canadian AIDS epidemic

By the late 1980s, AIDS was a deadly epidemic affecting the world. By 1988, it was estimated that over 60,000 people had died of AIDS or HIV-related illnesses in the U.S. and Canada. Few treatments were widely available during this time and medical care for HIV and AIDS was inconsistent across Canadian hospitals. Those suffering from the disease often were persecuted and isolated.

Several activist groups, such as the AIDS Committee of Toronto, formed to help provide information and health guidance to those suffering from the disease. In 1985, the Committee released “No Sad Songs”, one of the first documentaries on the HIV/AIDS epidemic. The documentary focused on the experiences of Jim Black, a gay man suffering from AIDS. Black died of AIDS-related illness several months after the release of the film.

AIDS Action NOW!

AIDS Action NOW! (AAN!) was a community-based activist group from Toronto, which formed in response to government and medical inaction around HIV/AIDS in the late 1980s. The group focused on extending the lives of people living with HIV/AIDS and improving their quality of life through access to treatment.

OISE teacher George Smith co-founded AAN! in the late 1980s with activist Michael Lynch. In February 1988, AAN! held its first meeting with 300 attendees at Jarvis Collegiate to discuss the group’s demands: access to experimental treatments for those living with AIDS. They became one of the most active AIDS community groups in Toronto during the 1980s and 1990s, expressing their demands at protests and sit-ins throughout Ontario.

A Right to Treatment

In the 1980s, without a vaccine or any widely successful treatment of AIDS, AAN! members demanded the right for AIDS patients to receive experimental treatments not yet approved by Health Canada. AAN! led its first protest in March 1988 outside Toronto General Hospital: members set up empty coffins representing the deaths of AIDS patients due to a lack of access to potentially life-saving drugs.

In response to this protest, along with other activism from AIDS community groups, the Canadian government allowed physicians to offer HIV and AIDS patients experimental treatments on compassionate grounds through the Emergency Drug Release Program (EDRP). By 1995, the EDRP was receiving up to 50,000 requests for experimental treatments annually.

Treatment Information Exchange

By the 1990s, the world had spent more than a decade fighting HIV/AIDS. Although AZT (azidothymidine) became the first drug approved to treat AIDS in the mid-1980s, new HIV/AIDS treatments were coming out all the time. It could be difficult for HIV/AIDS patients to keep up with the research and what treatment might work best.

In 1990, AAN! became one of the first groups to set up an HIV/AIDS treatment information system in Canada: the system collected the latest information on treatments and distributed it to community groups and physicians. Physicians would then report back to the registry on how successful the treatment had been. Known as the Treatment Information Exchange (TIE), the network provided up-to-date drug treatment information to both patients and physicians.

 

CATIE

By 1991, the TIE project was an important resource for those living with HIV/AIDS in Toronto. Thanks to its success, the project was incorporated as a charity separate from AAN! and renamed the Community Action Treatment Information Exchange (CATIE). Group members specifically chose a woman’s name as an acronym to combat the assumption that HIV/AIDS activism was only relevant to gay men.

CATIE set up an office and hotline, where anyone could call to find out the latest about HIV/AIDS treatments or if they have questions about a particular drug. By the late 1990s, CATIE was considered a national resource for HIV/AIDS information, prevention, and treatment options. It also expanded to include information on Hepatitis C. Given its national reach, the organization was renamed the Canadian Action Treatment Information Exchange.

Today, CATIE continues its mandate to freely provide the latest treatment options on HIV/ADS and Hepatitis C throughout Canada.