4 min

To see the future of HIV/AIDS activism, we must celebrate the past

A look back at key victories that got us to where we are today

Credit: Courtesy Pride Toronto

Canada has come a long way since the first cases of HIV/AIDS emerged in 1983. In less than four decades, the disease has gone from a devastating illness to a manageable condition. Knowledge has expanded and treatments are widely available. And recently, infection rates have started to decline, in large part due to the expanded treatment options and the use of HIV-prevention pill PrEP.

But the battle is far from over. Activists continue to fight for safe injection sites, which dramatically reduce the risk of infection but which many cities oppose. As overall infection rates drop, certain communities (particularly Indigenous people) continue to see new infections climb. Amid all the medical advances, stigma towards people living with HIV remains high.

Now in his 70s, Pearse Murray saw the effects of the epidemic in its earliest days. At that point, caring for people who were dying was the main focus, something he helped facilitate by raising money for Casey House, Canada’s first and only stand-alone hospital for people with HIV/AIDS.

However, as people with HIV live longer, a new set of challenges including housing, medical care and social support are emerging.

“There’s a big question of how people are going to manage financially,” Murray says. He says that a lot of people living during the early days of the AIDS epidemic didn’t plan for retirement because they didn’t think they would still be alive.

“They need housing and income because they can’t live off of disability. AIDS activism used to be [about] looking after people who are dying,” Murray says.“Now we need to figure out how to care for people who are alive.”

The advancements for people living with HIV today came only through the tireless work of thousands of activists. In contemplating the future of AIDS activism in the queer community, we look back at key victories that got us to where we are today.

The founding of the AIDS Committee of Toronto

Two years after HIV/AIDS entered the public consciousness, public hysteria and misinformation surrounding the disease was growing in Canada. In response, a small group of activists held a forum at Ryerson Polytechnical Institute that attracted more than 300 people. This forum eventually led to the creation of the AIDS Committee of Toronto (ACT, Canada’s largest AIDS service organization. Long known for raising money and awareness through initiatives, like Snap, AIDS Walk Toronto, and the fabulous Fashion Cares, the organization continues to work towards reducing new infections and fighting stigma in society.

The founding of Casey House

The result of massive community mobilization and fundraising, Canada’s first AIDS hospice was one of few places critically ill patients could die with dignity. The same hysteria over HIV that gripped the nation also permeated the health-care system. Visitors were required to wear masks and hospital gowns and nurses often left meals at the patient’s door, afraid to enter the room. As the reality of the disease has changed, so has Casey House’s mandate. They have evolved from a palliative care facility to become Canada’s first stand-alone hospital for people living with HIV. In recognition of the significant work put in over the last three decades, the organization is this year’s honoured group at Pride.

Canada’s first HIV/AIDS strategy created by the Mulroney government

Like other conservative politicians of the day, then–Canadian prime minister Brian Mulroney did not want to talk about HIV/AIDS. But after years of pressure from activists (including burning him in effigy during the 1988 election campaign) the government finally stepped up to create a national HIV/AIDS strategy nearly a decade into the epidemic. The strategy remains in place today, though changes need to be made. Access to treatment and prevention services is uneven across the country, and certain populations are falling through the cracks. Discriminatory laws which hurt sex workers and IV drug users remain in place. Like many other critical turning points in the epidemic, a successful national strategy isn’t a one-time victory, but rather an ongoing process.

PrEP Approved by Health Canada

From the earliest drugs in the late-1980s, to the development of the cocktail in the mid-1990s, more effective HIV treatments are continuing to develop. In 2012, a radical new proposal emerged: the use of an existing drug combination to prevent HIV infection before it happens. First approved in Canada in 2016, pre-exposure prophylaxis, better known as PrEP (and usually sold as Truvada) is gradually being added to provincial and private insurance plans. Generic alternatives have also dropped the cost dramatically for those who don’t have insurance. But more work still needs to be done to ensure the populations most at risk can access it.

HIV decriminalization

When HIV/AIDS first emerged, many people who were infected lost their jobs and were evicted from their homes. But in 1998 a new spectre emerged: the threat of criminalization. The result of a decision by the Supreme Court of Canada, new laws meant those who had sex without disclosing their status could be charged with aggravated sexual assault or worse, regardless of whether transmission had occurred. Canada gradually grew to be a world leader in criminalization, rather than follow the lead of countries like the Netherlands who treat prevention as a public health issue. But on Dec 1, 2017, World AIDS Day, the province of Ontario announced it would end prosecutions for HIV-positive people if they are receiving treatment with a suppressed viral load.

The move is a response to U=U, an international campaign which aims to spread the word that folks with an undetectable viral load effectively have no risk of transmitting the virus. Activists are cautiously optimistic about the move, though they feel doesn’t go far enough. The shift protects a certain sector of the population, but it fails to recognize uneven access to treatment and preventative services, or those who are not on medication but practising safer sex. As the battle against stigma and for better treatment continues, hopefully other jurisdictions will follow suit.