An AIDS ribbon hangs from a door in the offices of the AIDS Committee of Toronto.Fred Lum/The Globe and Mail
Canada’s largest and oldest HIV service organization, AIDS Committee of Toronto (ACT), will close in March after 42 years supporting those living with HIV.
Founded in 1983, the groundbreaking organization offered front-line services, peer and mental health support, and helmed advocacy and fundraising efforts to end HIV stigma and advance health care policy in Canada.
The decision to close ACT’s doors follows a drastic decline in service requests, owing to significant scientific breakthroughs that have given those with HIV the opportunity to live long and healthy lives. They include major advances in HIV testing and prevention medication, as well as treatments that suppress people’s viral loads to the point that they no longer transmit HIV.
As the science around HIV has advanced, people have begun approaching the organization for new kinds of help.
“After 42 years, it’s time for ACT to hand that baton on to other organizations doing great work,” said ACT executive director Ryan Lisk.
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When the organization was founded by volunteers in the early 1980s, HIV-AIDS led almost inevitably to long-term illness and death. Fear and stigma were running high. In those early years of the epidemic, the organization focused on crisis support, largely from peers.
In the intervening years, ACT offered formal mental health counselling and led campaigns related to sexual health and HIV prevention. As treatment improved, people living with HIV came to the organization with concerns beyond urgent medical care.
“They were needing to talk about employment, housing, mental health and social support,” Mr. Lisk said.
And so ACT evolved. “We created an employment service for people living with HIV that, all of a sudden, with new and advancing medications, were coming off of disability and returning to the work force.”
More recently, the focus has shifted to aging with HIV, which didn’t feel like a possibility for many of those diagnosed with HIV in the 80s, Mr. Lisk said. A newer priority is programming for people who outlived their friends and are socially isolated.
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In the next six months, ACT staff will help their current users land support with other organizations in the city. These will include Women’s Health in Women’s Hands, a community health centre for racialized women, and HQ Toronto, which offers testing, access to HIV treatment and prevention options, as well as mental health and substance abuse support. Those who’ve lived with HIV for decades also have increased risk for heart disease and stroke and need specialized support, according to Kevin Woodward, executive and medical director of HQ Toronto.
“A geriatrician may not have a lot of expertise or experience in individuals who are aging and living with HIV. This is the first group of people who are coming through, who are getting to that age where they’ve had HIV for 30 or 40 years and are doing well from that standpoint, but dealing with all the other aging issues,” said Dr. Woodward, an associate professor of medicine in the division of infectious diseases at McMaster University.
The closing of ACT comes as new infections are rising in Canada. Some 2,434 new cases of HIV were diagnosed in 2023, an increase of 35 per cent from the year prior, according to the Public Health Agency of Canada.
Mr. Lisk said organizations offering testing for HIV and other STIs need attention and funding, since many people still don’t feel comfortable asking their family doctor, let alone their parents. For the most vulnerable patients without insurance, some HIV medications remain inaccessible or unaffordable.
“HIV is still here,” Mr. Lisk said. “HIV stigma continues. HIV non-disclosure is still a legal issue. For young people who weren’t here in the 80s and early 90s, they need to know this is still a risk, that conversations about sexual health are important.”