Phobia about HIV still exists over 30 years after 1st AIDS case in Canada, activists say

AIDS is no longer the death sentence that it was when the first case appeared in Canada in March 1982 but activists say there is still a phobia about people with HIV.

'People are still really terrified of people with HIV,' activist Tim McCaskell says

Participants in the Pride parade in 1992 hold signs protesting government inaction over HIV/AIDS. As the AIDS crisis worsened through the 1980s and early 1990s, it became a central part of Pride events, including memorials and protests. (AIDS Committee of Toronto/Canadian Lesbian and Gay Archives)

AIDS is no longer the death sentence that it was when the first case appeared in Canada in March 1982, but activists say the phobia still exists.

Many people don't recognize that people living with HIV, if they are being properly treated, are not infectious, HIV/AIDS activist Tim McCaskell told CBC Radio's Metro Morning this week. He said what seems to be stigma is really fear.

"People are still really terrified of people with HIV," McCaskell said.

"We can't pass the virus onto anybody else in sexual activity or in any other type of activity. There's this sense that we're dangerous but also somehow that we're dirty, that this is the result of bad behaviour."

Activism 'kept us alive'

McCaskell, along with activist Christian Hui, recalled the early days of HIV/AIDS activism in Toronto in the early 1980s. McCaskell said it's important to remember that, back then, there was no human rights protection for gay men, many men were in the closet, and the first reaction to AIDS was panic. Then it was clear that activists had to organize and mobilize to prevent AIDS from affecting their struggle for liberation.

"The activism was something that kept us alive," McCaskell said. "We weren't going to go down without a fight."

It was a "frightening" time and a time of "deep despair," he added.

Hui agreed, saying people with HIV are still invisible in lots of ways. There still exists a sense that: "You deserve this illness," he says. "That kind of stigma has not changed through time."

Hui added: "HIV has really started to impact more and more marginalized communities."

This weekend and this month, Pride Toronto is marking more than 30 years of HIV/AIDS activism as it celebrates the city's LGBT community.

"Action = Life" is Pride Toronto's theme this year. 

And that theme is being reflected in a number of forums, including panels, art exhibits and posters, all of which are focusing on the role that HIV/AIDS has played. 
AIDS ACTION NOW! at Toronto Pride in the early 1990s. (AIDS Activist History Project, accessed November 28, 2017)

The theme is a "celebration of the progress we have made against a disease threatening communities around the globe," Pride Toronto says in a news release.

"It is a call to action to reawaken our passion in the fight against HIV/AIDS and commit as deeply as those who came before us," the organization says. 

And it has been a journey. According to an HIV/AIDS history compiled by the Canadian Aids Treatment Information Exchange:

  • In March 1982, the first case of AIDS was reported in Canada.
  • One year later, a group of community activists formed the AIDS Committee of Toronto, which turned into an AIDS service organization. 
  • "Little was known about AIDS at the time, but a terrible stigma was attached to those who had it, and nothing was being done to help them," the AIDS Committee of Toronto says on its website. 
  • In 1988, about several people attending a public meeting at Jarvis Collegiate formed an advocacy group called AIDS ACTION NOW!, which has focused on access to treatment.
  • In 1988, Casey House, Canada's first and only stand-alone hospital for people with HIV/AIDS, was formed.
  • In 1991, the Red Ribbon became a world symbol of AIDS awareness.
  • In 1992, Ontario's ministry of health created anonymous testing sites across the province.
  • In 2006, the 16th International AIDS Conference was held in Toronto.

Casey House is the "honoured group" for Pride 2018.

In 1991, the Red Ribbon became a world symbol of AIDS awareness.

"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," McCaskell wrote in an article entitled "A brief history of AIDS activism in Canada," published on

Now a manageable illness

Now, AIDS, or Acquired Immune Deficiency Syndrome, is manageable illness, thanks to medical advances.

HIV, or human immunodeficiency virus, which causes the set of symptoms known as AIDS, can be treated through what are called antiretroviral drugs. 
Canadian activists protested the lack of a federally-funded AIDS strategy at the 1989 International AIDS Conference in Montreal. (AIDS Activist History Project)

According to the World Health Organization, HIV/AIDS is still of major concern.

"HIV continues to be a major global public health issue, having claimed more than 35 million lives so far," WHO says.

In 2016, one million people died from HIV-related causes globally.

New HIV infections on the decline

Groups at increased risk of HIV infection include: men who have sex with men, people who inject drugs, people in prisons, sex workers and their clients, and transgender people, according to WHO.

"There is no cure for HIV infection. However, effective antiretroviral drugs can control the virus and help prevent transmission so that people with HIV, and those at substantial risk, can enjoy healthy, long and productive lives," the international organization says.

Between 2000 and 2016, new HIV infections dropped by 39 per cent, while HIV-related deaths edged down by one-third with 13.1 million lives saved due to drugs in the same period, WHO says.

WHO says the decline is the result of "great results" by national HIV programs.

With files from Metro Morning, Muriel Draaisma