Volunteers at the AIDS Committee of Toronto help to package condoms, lubricant and safe sex information in November, 1998.Fred Lum/The Globe and Mail
Bittersweet.
The word captures perfectly the emotions generated by the news that the AIDS Committee of Toronto, an activist organization born at the outset of the HIV-AIDS pandemic, is winding down operations.
Dramatic advances in prevention and treatment of HIV-AIDS mean that many of ACT’s services are no longer needed.
That is the sweet spot every community group and social services agency dreams of: To be put out of business by lack of demand.
Yet, while the number of news cases and deaths have fallen dramatically, HIV-AIDS is still with us, lingering like the ghost of crisis past.
At the end of 2022 (the most recent year for which data are available), an estimated 65,270 people were living with HIV in Canada.
Not an insignificant number. But, thanks to medical innovations, most are in good health. Almost forgotten.
The stated global public health goal that countries like Canada have committed to is to end HIV-AIDS by 2030.
To do so, we need to achieve 95-95-95 targets – meaning 95 per cent of those with HIV are diagnosed, 95 per cent are being treated and 95 per cent of those on treatment have a suppressed viral load.
In Canada we’re at 89-85-95, well short of the goal.
In other words, people are falling through the cracks. And, increasingly, those being left behind are in marginalized communities.
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In 2023, there were 2,434 newly diagnosed cases of HIV in Canada.
HIV, once predominantly a virus that spread among men who have sex with men, now cuts a broader swath.
Today, 39 per cent of infections occur through heterosexual contact, and 36 per cent in men who have sex with men. Another 18 per cent are attributed to intravenous drug use. One-third of new cases are in women.
The two communities where HIV numbers are growing rapidly are among the most marginalized: Indigenous peoples, and trans women. Saskatchewan and Manitoba are the hotbeds of HIV transmission, with infection rates three times the rest of Canada, concentrated principally in First Nations communities.
That’s where we have to focus our efforts.
In the early days of the HIV-AIDS pandemic (ACT was founded in 1983), the situation was dire. Prevention consisted of distributing condoms (if that), there were no treatments, little testing and there was a whole lot of stigma and homophobia, all of which combined to fuel the spread of the virus.
Today, we have incredible tools at our disposal. HIV has become just another chronic illness.
Antiretroviral treatments, which have been around since 1996, work miracles. But you have to be able to access the drugs for them to work.
Treatment as prevention, a Canadian innovation, could entirely stop the spread of new cases. But only one province, B.C., has fully embraced TaSP.
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The AIDS Committee of Toronto was one of the first Canadian groups formed in response to the pandemic. It has left an indelible mark.
ACT, however, is not the first HIV-AIDS group to shut down – even the once mighty ACT UP has only two remaining chapters, in New York and Philadelphia – and it won’t be the last.
Forty-two years of dedicated service is nothing to sneeze at. We should be celebrating the tremendous work ACT has done – in advocacy, in education, and in service provision.
ACT was once a fundraising juggernaut, having raised more than $12-million with its popular Fashion Cares events. Today, it has trouble raising even a few bucks from donors, and government funds are almost as difficult to come by.
As COVID-19 has reminded us, we are all too eager to put health disasters behind us, no matter how big and impactful.
AIDS is one of the worst pandemics in history. Nearly 85 million people have been infected with HIV, and there have been 44 million deaths to date.
We can’t just forget that carnage.
But it’s also okay to celebrate progress – and to celebrate groups like ACT that have made a difference – as we turn our attention to what comes next.
Hopefully not indifference, but rather a different response to a pandemic that has taken a new shape, and created new challenges.
The HIV-AIDS pandemic has changed a lot over four-plus decades. So too must the response.
Editor’s note: A previous version of this article incorrectly stated that AIDS Committee of Toronto was the first Canadian group formed in response to the pandemic. It was one of the first.