AIDS Action Now!

This administrative history does not encapsulate the work of AIDS ACTION NOW! in its entirety, but reflects some of the initiatives documented in the fonds, providing context to the records.

In 1987, a group of gay activists, health care professionals and former politicians were brought together by Michael Lynch to discuss the state of HIV/AIDS research, treatment and care. This group included Gary Kinsman, George Smith, Alan Dewar, James McPhee, Michael Hulton, Dennis Conway, Wayne Boone, Russell Armstrong, and Tim McCaskell.

At the time, the government had failed to establish standards of care, had not supported research, or provided access to newly available treatments. The Federal Conservative Health Minister Jake Epp had made multiple homophobic comments and was doing little to address HIV/AIDS. There was a sense that PLWHA were abandoned by the government due to homophobia. This failure to establish standards of care meant that HIV/AIDS patients received care that varied depending on the hospital or doctor they were dealing with. Some hospitals would conduct tests that others refused to, visitors were oftentimes turned away, and nurses and orderlies would refuse to treat patients.

In November 1987, Lynch published an article entitled “‘Silence= Death, US Gays Fighting Homophobic Policies - What About Us?” The article solidified the group’s position that the government’s homophobia was standing in the way of meaningful action on HIV/AIDS.

On February 4, 1988 the group organized its first public meeting at Jarvis Collegiate. Between 300 to 400 people were in attendance. This meeting led to the establishment of AIDS ACTION NOW! The Toronto based grassroots activist group was established to represent and fight for PLWHA. It sought to transform HIV infections into a chronic manageable illness by ensuring that research, health care and social service systems delivered optimal care. Four demands were put forward and included:
The immediate availability of aerosolized pentamidine to prevent pneumocystis pneumonia
Consensus conference on standards of care
Government action to make experimental treatments available
Adequate funding to make Canada a leader in AIDS research

AIDS ACTION NOW! has advocated for people living with HIV/AIDS through demonstrations, educational efforts, the development and submission of briefs, lobbying politicians, national press campaigns, and initiatives with partnering organizations.

On March 25, 1988, AAN! organized its first demonstration. At the time, pneumocystis pneumonia was the leading cause of death for people living with HIV/AIDS. Seemingly healthy people would die within weeks after being infected with PCP. In Canada, patients would be administered pentamidine intravenously once they got diagnosed with PCP. However, there was growing research coming out of the United States that demonstrated that weekly doses of aerosolized pentamidine administered to PLWHA could prevent or lower the rate of PCP infections. However, without Canadian trials, Health Canada would not provide approval for the aerosolized pentamidine, which prevented doctors from prescribing it to their patients. In February 1988, Health Canada approved the Fisons’ aerosolized pentamidine trial. This clinical trial would provide half of its participants with a placebo rather than the treatment. Given PCP’s high mortality rate, there was a high chance that some of the participants would die proving something that had already been demonstrated with the American trials. The March 25 demonstration was organized to protest this Fisons trial. The 500 demonstrators left the 519 Church Street Community Centre carrying empty coffins, and made their way to the Toronto General Hospital where the trial was being conducted. A few weeks later, Fisons made the announcement that they would establish a compassionate arm, which would provide treatment to those who did not meet the specifications of the trial.

As a response to Health Canada’s failure to approve of the aerosolized pentamidine, AAN! developed a guide and phone line that provided information on how to get a prescription for the treatment and where it could be purchased in the United States. The guide was distributed at doctors’ offices, AIDS Service Organizations and hospitals throughout Toronto. AAN! worked together with ACT and PWA to provide funding for those who could not afford the drug.

On May 18, 1988 the Canadian AIDS Society held its national conference in Ottawa. AAN! held a die in front of the conference and burned an effigy of Health Minister Jake Epp. This protest made national headlines. The following week, AAN! activists returned to Ottawa and held a press conference in front of Parliament Hill, where they consumed treatments that were not yet approved in Canada.

Lynch was hospitalized for PCP in 1988, and McCaskell took over the role of chairperson. On October 5, 1988, the first AIDS ACTION NOW! annual general meeting was held. McCaskell was elected as the chairperson and the first AAN! steering committee was established.

A federal election was scheduled for the fall of 1988. As a response to the Progressive Conservative’s government record on AIDS, AAN! ensured that Prime Minister Brian Mulroney was met with angry AIDS activists at all his Toronto campaign events. On October 22, a rally was organized to protest the government’s failure to permit the use of non-approved treatments through the Emergency Drug Release Program. AAN! activists burned an effigy of Mulroney and made national headlines. In January 1989, the new Minister of Health Perrin Beatty announced that requests for non-approved HIV/AIDS treatments could be submitted to the EDRP, which included aerosolized pentamidine. The Fisons aerosolized pentamidine trial was terminated with this announcement.

In the fall of 1988, AAN! called for anonymous HIV testing and the creation of a National Treatment Registry. AAN! developed briefs and met with Members of Parliament to advocate for the registry.

In February 1989, AAN! organized protests outside of the Don Jail calling for better access to care for PLWHA. The AAN! Prisons Subcommittee eventually led to the establishment of the Prisoners AIDS Support Network (PASAN) in 1991.

In the spring and summer of 1989, AAN! focused its attention on the upcoming Fifth International AIDS Conference that was being held in Montreal. These AIDS conferences were generally centered around the work of medical professionals, government bureaucrats, and pharmaceutical companies, not people living with HIV/AIDS. Leading up to the conference, AAN! received the floor plan of the convention centre with the help of Montreal City Councillor Raymond Blain. Over 300 activists from groups including ACT UP, AAN! and Réaction Sida stormed the event with signs and banners. Activists made their way up to the stage and McCaskell gave an impassioned speech criticizing the Mulroney government’s record on AIDS, called for anonymous testing and denounced the scapegoating of sex workers. An ACT UP spokesperson read the Montreal Manifesto - The Declaration of Universal Rights and Needs of People Living with HIV. The manifesto was an international bill of rights for PLWHA and was put together by the AIDS activist groups.

In April 1990, Health Minister Perrin Beatty announced that a National AIDS Strategy would be developed within the next 6 months. The National AIDS Strategy secured funding and coordination for research, prevention, education and services. This National AIDS Strategy would include a National Treatment Registry, meeting one of the demands made by AAN!

In 1990, AAN! launched the Treatment Information Exchange project (TIE). TIE was developed to improve access to treatment information for health care providers, AIDS organizations, PLWHA and medical researchers. In September 1989, AAN! received funding from the Trillium Foundation to cover the cost of printing and mailing, and to hire a coordinator for the project. In February 1991, TIE was incorporated as the Community AIDS Treatment Information Exchange (CATIE) so that it could qualify for charitable status and government funding.

In 1990, the Ontario Chief Medical Officer of Health Richard Schabas proposed that Ontario Minister of Health reclassify AIDS virulent rather than communicable. Schabas suggested that anyone who was suspected of knowingly spreading the virus be quarantined. The AIDS reclassification would make this possible, as it would give health care officials the right to detain people. Schabas also believed that it was too risky to have sex with someone who was HIV positive even with a condom. As a response to Schabas’ claims and quarantine proposal, AAN!, ACT, Casey House, PWA Foundation organized a demonstration and press conference demanding for his resignation. Schabas’ quarantine plans were blocked.

In the fall of September 1990, the Ontario Liberal Party was defeated by the New Democratic Party. During the election campaign AAN! organized protests at the All Candidates Meeting at the 519 and the Women’s College Hospital. The group presented their proposal for an “Ontario AIDS and HIV Strategy'' to the government. Within a month of the election, the provincial government approved province wide anonymous HIV testing and representatives from AAN! were appointed to the new Provincial Advisory Committee on AIDS. However, there was no mention of HIV/AIDS in the throne speech and AAN! was unsuccessful in their attempts to schedule a meeting with the Health Minister. This election coincided with AAN!’s new focus on the high cost of drugs. While new treatments were emerging, the costs were inaccessible to a large portion of PLWHA. Private drug plans made the cost of drugs more accessible but not everyone worked for employers that provided drug insurance. Alternatively, the provincial drug benefits card covered the cost of medication for those over the age of 65 or for those on public assistance. Many PLWHA were faced with the choice of quitting their jobs to go on public assistance or continue to work while their health deteriorated. Drugs were free under public assistance, however public assistance was so low that it was difficult for PLWHA to afford housing, nutritious food and other essentials that were integral for those with weakened immune systems.

In January 1991, AAN! met with the Minister of Health Evelyn Gigantes, and presented her with a brief that discussed the variety of issues from high cost of drugs, poverty and the need for a provincial AIDS strategy that included a catastrophic drug plan.

In 1991, AAN! organized a demonstration protesting Canada’s involvement in the Gulf War, calling the government to redirect funding from the war to HIV/AIDS funding. The demonstration highlighted the link between racism, imperialism and government AIDS inaction.

On June 26, 1992 AAN! organized their first die-in at Lesbian and Gay Pride Day and demanded for increased AIDS funding. The following year, a second die-in was organized at the event with thousands of participants who protested the provincial government’s inaction on AIDS. In December 1993, AAN! held a demonstration that ended at the Ontario Minister of Health’s office demanding for a catastrophic drug plan.

In April 1994, AAN! interrupted the Ontario legislature by dumping bags of fake money on the politicians from the visitor’s gallery in protest of the NDP’s inaction. Activists also dressed up as statues at Queen’s Park and held signs calling for a drug plan. Shortly after, AAN! stormed the stage at the provincial NDP conference in Hamilton. On November 30, the government announced that a catastrophic drug plan would be implemented by April 1995. The Trillium Drug Program covered the cost of drugs if they surpassed a certain percentage of an individual’s income.

In April 1995, AAN! held a press conference to announce the release of the report card they had developed grading Canadian pharmaceutical companies on their AIDS research effort.

The National AIDS Strategy was set to expire in 1997. AAN! organized demonstrations, press conferences, and distributed 15,000 postcards urging the Federal Liberal Government to renew the strategy. They took out a full page advertisement in the Globe and Mail with the headline “Prime Minister Chrétien: Don’t Give Up on AIDS”. In April 1997, the government announced that they would renew the National AIDS Strategy.

In the spring of 1998, the Wellesley Hospital was slated to close. The Wellesley Hospital had been the centre for AIDS care in Toronto. All of its programs would be taken over by Saint Michael’s Hospital which had had a history of restrictive sexual health and HIV/AIDS services. AAN! and its community partners lobbied the Minister of Health to make Saint Michael’s a public hospital.