A brief history of AIDS activism in Canada

In the early 1980s, the nightmare of AIDS broke like a tsunami over gay communities in Canada’s major cities. Young, healthy gay men were suddenly and inexplicably dying. No one knew the cause of the epidemic. There was no treatment, no cure.

With medical science impotent and government largely silent, gay communities were mostly thrown back on their own resources. The first wave of AIDS activism established organizations offering support and counselling, hospices to care for the dying and, once HIV had been identified, prevention campaigns urging safer sex.

By 1987, impatience with government inaction and lack of research for treatments finally erupted in the United States. The AIDS Coalition to Unleash Power (ACT UP) emerged in New York, quickly leading to the formation of chapters across the US. This second wave of AIDS activism, characterized by in-your-face actions, drew on the women’s health movement’s considerable skepticism of the medical establishment as well as the strategies and tactics of lesbian and gay liberation, and soon had its counterpart in Canada. AIDS ACTION NOW! (AAN) formed in Toronto in 1988. Most of AAN’s activists were HIV-positive. A new “Poz” identity was emerging—one that brought together all people living with AIDS, no matter what their sexual orientation.

Unlike in New York, Canadian AIDS activism avoided a civil war between established AIDS service organizations and the new radicals. In Toronto, a rough division of labour was established. The government-funded AIDS service organizations did the support, counseling and education. That left AAN free to challenge government policies and practices, since the activist group refused to accept state or corporate funding.

The first focus of this new activism was on access to treatment. This was an implicit criticism of the Public Health approach that was so focused on prevention that it ignored the needs of those already infected. The first fights were around concrete access to new and experimental drugs. The targets were government regulatory authorities that blocked access to unapproved treatments, and then the pharmaceutical industry that refused to release experimental treatments for compassionate use.

Once the legal right of sick people to access unapproved treatments was established, the second focus was on access to information. AAN set up the Treatment Information Exchange in 1989. Over the years this project has morphed into the Canadian AIDS Treatment Information Exchange, a federally-funded body that is the national clearinghouse for information on both HIV and Hepatitis C.

By the early 1990s, more treatments were becoming approved and a third issue emerged: financial access. The new drugs were expensive. Many people living with HIV did not have medical plans. Their choice could be stark. To get a provincial drug card one had to be on welfare. That meant not working, exhausting one’s savings and impoverishing oneself. Then while people had access to free drugs they were probably too poor to adequately nourish, house and clothe themselves. From 1990 to 1994 AAN waged a relentless campaign against the Ontario NDP government demanding a catastrophic drug plan for the province. The government finally relented and the last major piece of legislation to come out before the NDP’s defeat by the Harris Tories in 1995 was the Trillium Drug Plan, which now provides access to medicines when their cost exceeds someone’s capacity to pay.

The next period was characterized by attempts to fight back and limit the damage caused by the Harris government’s neoliberal restructuring of society, with its drastic cuts to health and social services. This was a long and grueling fight with as many losses as victories.

By 2001 much of the energy of the second wave of AIDS activism had dissipated. Most of the original activists had died. But the emergence of new and more effective anti-viral treatments meant that the dying had been staunched. The worst part of the crisis seemed to be over. After a decade and a half, many in the community just wanted to get on with their lives.

The AIDS tsunami might have receded in Canada, but it continued its destruction in other parts of the world. After the International AIDS Conference in Toronto in 2006 there was a resurgence of activism, this time often focused on international issues. In South Africa the Treatment Action Campaign, with solidarity from activists around the world, led a huge struggle to demand access to treatment from an unwilling Mbeki government. When the ANC government finally backed down and agreed to a treatment roll out, a second battle needed to be fought as the international pharmaceutical industry sued South Africa, demanding that the country forgo inexpensive generic medicines and buy only name-brand drugs at inflated prices. Due to international pressure, “big pharma” was finally forced to drop its suit. A few years later the battle had to be refought as Abbot Pharmaceuticals tried to blackmail Thailand to prevent it from purchasing cheaper copies of one of Abbot’s drugs.

Now, as poverty increases due to neoliberal restructuring, the focus has come back home. AIDS has become a disease of poverty that disproportionately affects the most vulnerable. We fight to maintain services in the face of cuts, demand harm reduction strategies to protect drug users, and challenge the increasing criminalization of HIV in the “justice” system.

Back in 1989, when I was in Montreal scouting out the site of the impending International AIDS conference, a young HIV-positive man told me, “AIDS is like a lens. When you look through it you see all of society’s problems magnified.” This has never been more true than now. The barriers to ending the epidemic are structural inequities and global inequalities. AIDS will not be defeated until we see fundamental social change. The challenge for AIDS activism is to be part of that change.

Tim McCaskell is a founding member of AIDS Action Now! and he will be speaking on a panel of past and present members of AAN at a free screening of the documentary film “United in Anger: a History of ACT UP” on Tuesday, November 27 at 6pm in Jackman Hall at the Art Gallery of Ontario (facebook event here). This free screening is part of Day With(out) Art 2012 events, along with the free poster/VIRUS project launch on Wednesday, November 28 at 6pm in Walker Court at the Art Gallery of Ontario, which will feature artists, performances and speakers. For more information, please visit: www.aidsactionnow.org/