Stigma still surrounds HIV/AIDS, despite effective treatment options

TORONTO — Twenty-two years ago, when Scott Gary Major was first diagnosed with HIV, public opinion surrounding the disease in Canada was distorted with homophobia, misinformation and fear.

Things have improved since then. Less people are “afraid of me,” he told CTV News.

HIV/AIDS is no longer an automatic death sentence, and Major says that makes a difference in how he is viewed, “because it’s … comparable to having other easily treatable diseases.”

However, as Canada rings in the 31st World AIDS Day, health organizations across the country are sounding the alarm that stigma surrounding the disease still exists — and that thousands of people are still struggling even though the disease has largely left the headlines.

Dec. 1 is World AIDS Day, and the start of Aboriginal AIDS Awareness Week. The first case of AIDS reported in Canada was in 1982, according to the Canadian Foundation for AIDS Research. The first World AIDS Day was held in 1988, at a time when politicians wouldn’t even say HIV out loud.

More than 60,000 Canadians are living with HIV/AIDS today. In 2018, HIV related causes claimed the lives of roughly 770,000 people worldwide.

In Montreal — where 10,000 people are living with HIV — a new ad campaign is coming to metro stations and social media to raise awareness.

The campaign features videos that display a false and damaging assumption about HIV and then correct it, using the slogan, “the most dangerous thing about HIV is the stigma.”

“We wanted something bold, so we are going to be in the Metro, everywhere,” said Dr. Sarah-Amelie Mercure, with Montreal Public Health. “(We) want people to spread the word HIV isn’t what it was.”

Misinformation drives the stigma that still surrounds HIV. People living with HIV/AIDS have often been ostracized by their communities in the past due to homophobia and a disproportionate fear surrounding contracting the disease.

Many of those misconceptions are still pervasive today, even in countries such as Canada. A 2018 survey from the Public Health Agency of Canada showed that more than one in five Quebecers were under the impression that they could contract HIV simply from being in the presence of a person living with the condition — a fear which has no basis in reality.

“A quarter of Canadians said that they will not have a hairdresser living with HIV,” said Dr. Sarah-Amelie Mercure, with Montreal Public Health. “There’s no risk, there never was a risk.”

HIV cannot be transmitted by touch, or by things such as kissing, hugging, sharing food, using public toilets or mosquito bites. 

And with medical advancements, those living with HIV who are receiving treatment and maintaining an undetectable viral load “have effectively no risk of transmitting HIV to their sexual partners,” according to Canada Health.

This is referred to as the U=U campaign, short for Undetectable=Untransmittable, a breakthrough recognition based on years of research. Canada was the first country to officially endorse the U=U campaign in 2018.

Brock Dumville from REZO, a Montreal-based organization supporting gay and bisexual men, said that although the “advances in treatment and prevention are huge,” he doesn’t always feel like there’s enough awareness.

“I think our thinking hasn’t really been updated since the 80s,” he told CTV News Montreal.

A statement from the Public Health Agency of Canada this Sunday pointed out the role that community organizations have had in battling discrimination and improving the lives of those living with the disease.

In British Columbia, the Health Ministry said in a news release Sunday that there were 208 new cases of the virus in 2018, continuing a steady decline from 437 cases in 2004 — a trend that the Ministry attributed to work by the BC Centre for Excellence in HIV/AIDS, as well as other local health advocates.

“Breakthroughs in treatment and prevention, along with education, awareness, community work and fighting stigma, have contributed to huge advancements toward the elimination of this epidemic,” said Premier John Horgan in a statement.

Meanwhile the AIDS Committee of Ottawa says that easier access to testing and education is still needed, despite the decline in the disease.

Executive Director Khaled Salam said he was concerned that now that the general public is aware that HIV does not have to be fatal, and that there is “medication that keeps you healthy and (gives you) normal life expectancy,” those in danger of transmitting the disease could have “a sense of complacency when it comes to transmission of HIV and AIDS.”

The 2019 celebration of World AIDS Day is striking also because of how close we are to the end of the decade — and to goals regarding HIV/AIDS health that Canada had agreed to achieve by then.

In 2014, the Joint United Nations Programme on HIV/AIDS, known as UNAIDS, announced the 90-90-90 targets, which aimed to achieve 90 per cent of those with HIV/AIDS getting diagnosed, 90 per cent of those diagnosed to be receiving treatment, and 90 per cent of people on treatment to have achieved viral suppression by 2020.

The ultimate goal is to have eliminated HIV/AIDS by 2030.

A paper published this year in AIDS Online looked at the 2018 data from 170 countries to see where they were on 90-90-90, and found that of the 37.9 million people living with HIV worldwide, around 53 per cent had gotten the treatment to achieve viral suppression, and that 15 countries had already achieved the target regarding viral suppression by 2018.

According to information from, a Canadian website dedicated to AIDS and hepatitis C awareness, in 2018 Canada had achieved 89 per cent diagnosed, 81 per cent of those diagnosed receiving treatment — and 91 per cent on treatment having achieved an undetectable viral load, meaning that Canada has achieved at least one of the three goals.

Reducing stigma will be imperative in defeating the disease completely, Mercure adds.

“We need to stop being afraid of people living with HIV,” Mercure said. “There are good treatments now, and people on medication, they don’t pass on the virus anymore.”

Major said he feels “very blessed,” to have witnessed the “change in the disease and the change in the reaction from the public,” over the years.

“Here’s hoping that maybe one day … we won’t need to celebrate a World AIDS Day anymore, because it just won’t exist,” he said.

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