In the early 1980s, for Canadians, what we now know as AIDS was an illness affecting some men in San Francisco and New York City.
In 1981, the United States’ Centers for Disease Control and Prevention (CDC) discovered a rare form of pneumonia in young gay men. The disease was thought to only impact gay men. However, there was evidence that people injecting drugs through syringes were contracting the illness.
In March 1982, Canada would see its first HIV diagnosis. This event would spur a significant amount of activism in the LGBTQ+ community. This was also the same year that the term Acquired Immunodeficiency Syndrome (AIDS) would be coined.
With misinformation and bigotry fueling public dialogue, AIDS would receive the title of a “gay disease,” and public opinion would quickly dissuade politicians from adequately providing resources for those living with the condition.
In response to the rampant homophobia that became synonymous with HIV, individuals came together at a grassroots level to create support networks and advocacy groups. These groups would demand resources for the study of HIV, services for those living with the disease, and policies that provided legal protections and reduced discrimination.
As mainstream media outlets and politicians framed the AIDS issue in a way that elicited fear and repulsion, 300 people came together at a forum in Toronto to talk about an adequate response to the alarming number of deaths and public apathy towards those who died of AIDS.
AIDS Committee Toronto (ACT) would be founded from this gathering and would work to change the narrative about people living with HIV while advocating for their rights (in 1984, ACT would host the first AIDS Awareness Week).
Bill Lewis, an epidemiologist active with ACT in the 1980s, wrote an opinion piece for the April 1983 edition of The Body Politic, an LGBTQ+ magazine in Toronto.
In response to a misinformed letter to the magazine, Lewis wrote a heartfelt piece denouncing the controversial “overload” theory, which contends that “promiscuous” gay men have engaged in so much sex that their immune systems have weakened from infections like gonorrhea and syphilis. This, according to the letter writer, was why AIDS was killing so many men.
“I think that has dangerous implications,” Lewis said in his piece. “The overload theory suggests that AIDS is not infectious and that a person with the disease would therefore not have to worry about passing it on to sexual partners. It also suggests that by reducing his number of sexual contacts, a patient can get better. Simply by adopting a new sexual ethic, we could end the epidemic.”
Advocating that it’s best to “clarify the relationship between promiscuity and the disease,” Lewis would go on to provide a more well-reasoned analysis, one that didn’t link promiscuity with transmitting AIDS.
While some advocated through the media, others devoted themselves to direct service. Le Comité sida aide Montréal (CSAM) was founded in 1983 as a working group commissioned by the Quebec government. They worked to advocate for treatment, provide services for those living with HIV, and educate members of the public about HIV and how to reduce transmissions.
That year would also see Canada commission its first AIDS task force as an increase in reported cases spiked in Australia, Europe, Haiti, and several other regions. A growing awareness that AIDS was not solely limited to gay men caused an international surge in interest to understand the disease.
AIDS ACTION NOW! (AAN) was also formed in the 1980s to encourage the Canadian government and healthcare system to take more drastic action to address the spike in deaths from AIDS. Based in Toronto, AAN would lead demonstrations, educate members of the public about AIDS, and demand resources to better meet the healthcare needs of those living with HIV and AIDS.
“By 1987, impatience with government inaction and lack of research for treatments erupted in the United States,” said John Maxwell, executive director of ACT. “The AIDS Coalition to Unleash Power (ACT UP) emerged in New York, quickly leading to the formation of chapters across the United States.
This second wave of AIDS activism is often characterized by its ambitious actions. This wave drew on the women’s health movement’s considerable skepticism of the medical establishment and 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 HIV/AIDS.” Other organizations like the AIDS Committee of Ottawa (ACO) were founded to provide direct support and services for people living with AIDS.
In 1983, French scientists were able to identify a virus that was believed to cause AIDS; the United States would take two more years to identify human T-lymphotropic virus type III (HIV) as the virus that causes AIDS. Later on, in 1985, the Canadian Red Cross would start screening blood samples for the virus, and Montreal would hold the first Canadian Conference on AIDS.
By 1986, scientists in the United States would receive permission from the Food and Drug Administration (FDA) to create the first blood test to screen for HIV. Also that year, the Canadian AIDS Society (CAS)—founded to represent local and community-based HIV/AIDS organizations on a national level—was established and started educating the public about HIV and AIDS and advocating for policy change with the Canadian government.
The late 80s would see more progress being made, including the:
- Development of the first antiretroviral treatment
- Establishment of World AIDS Day annually on December 1
- Several international summits developing collaborative projects to reduce transmissions
- AAN publishing its first issue of AIDS UPDATE, a regular newsletter on issues of importance for those living with HIV/AIDS
In the 90s, Canada would:
- Create several institutions and initiatives, including the Canadian HIV Trials Network, the Canadian Association for HIV Research, and the British Columbia Centre for Excellence in HIV/AIDS.
- Make advancements in treatment while more medicines were developed.
- Provide more testing sites and international conferences to increase support for those living with HIV.
By 1994, the World Health Organization (WHO) estimated that between 13 and 14 million people were living with HIV and predicted the number would more than double by 2000. In 2007, WHO reported that a 2005 study showed that 10 percent of people living with HIV actually knew they had it.
According to WHO, an average of nearly 37 million people have died from HIV/AIDS since the early 1980s. The institution also estimates that near the end of 2020, almost 38 million people were living with HIV.
What the data says
The Public Health Agency of Canada (PHAC) estimates that in 2018—its most recent year of data collection—roughly 62,050 people in Canada were living with HIV. That number is expected to have risen in the last three years. PHAC also noted that 13 percent—or 8,600 people—were not aware of their status.
“When we look at the statistics, we see that gay, bisexual, trans, and other men who have sex with men are the most overrepresented group when it comes to individuals living with HIV/AIDS in Canada,” said Max Housany, men’s outreach coordinator for ACO. Nearly half of the more than 60,000 people living with HIV in Canada are gay and bisexual men who have sex with men (MSM).
“Other overrepresented populations when it comes to those living with HIV/AIDS are people who use injection drugs, Indigenous people, individuals belonging to the African/Caribbean/Black community, and female-identified individuals,” he continued.
According to PHAC, the number of people in Canada living with HIV has risen steadily since 1975. In the four years leading up to 2018, the number of HIV diagnoses increased by 25 percent. The increase can also be attributed to the fact that more people were able to access HIV testing in Canada due to increased awareness and more robust sexual health advocacy across the nation.
“We are the most underperforming country in the G7 with regards to reaching zero [transmissions],” said Gary Lacasse, executive director of CAS. The Group of Seven (G7) is a global political forum including Japan, the United Kingdom, France, Germany, the United States, Canada, and Italy.
Lacasse believes that institutions caring for those living with HIV need to be better funded to help educate the general public and provide services like access to affordable treatment, needle exchange programs, and adequate healthcare.
Dispelling the myths
Sadly, ignorance drives many of the interactions people living with HIV have with the general public. There is no shortage of ill-informed myths and stereotypes that HIV-positive people and activists must combat to seek fair treatment. Here are a few of them:
Myth: It’s easy to transmit HIV
Fact: “...in fact it’s not, and you cannot get HIV from someone....by kissing, sharing utensils, etc. Since [HIV] needs to get into your bloodstream to get infected, only certain sexual activities are considered ‘high risk'—mainly condomless anal or vaginal sex. The other chief route is sharing injection drug equipment.” – John Maxwell, executive director, AIDS Committee of Toronto
Myth: You can contract HIV by sharing a toilet seat with someone who has HIV
Fact: “There are five fluids that transmit HIV. These are blood, semen (including pre-cum), vaginal/frontal hole fluids, rectal fluids, and breast/chest milk.” – Max Housany, men’s outreach coordinator, AIDS Committee of Ottawa
Myth: You will contract HIV if you have sex with someone who is living with HIV
Fact: “This is not true. Someone who is not living with HIV cannot contract HIV from having sex with someone who has an undetectable viral load. This is scientifically proven. Furthermore, taking PrEP and the consistent use of condoms/protection are two highly effective strategies when it comes to HIV prevention.” – Max Housany, men’s outreach coordinator, AIDS Committee of Ottawa
Myth: Your HIV status is a statement/judgement on who you are and your sexual practices/history
Fact: “I have always said, HIV does not define you, HIV is a part of you, people living with HIV are thriving, be one of them.”
We do ourselves no favours if we don’t educate ourselves prior to making decisions around who we sleep with. There’s no replacement for doing research, having candid conversations, and understanding the risks involved when having sex with another person. Well-informed research will always trump ignorance.
In the final installment of our series, we’ll learn about the activists and organizations that are working to reduce HIV transmissions to zero.