“People either think of HIV as a death sentence like they did in the 80s or they think it doesn’t exist anymore,” says Myles Sexton, a Toronto-based content creator who is HIV+ and uses their platform to raise awareness about the virus. Most people who are old enough to remember the fear and stereotypes surrounding the virus that were perpetuated in the 80s and 90s know that any mention of HIV/AIDS came with an accompanying stigma that painted it with a dark black cloud – should someone have the courage to bring it up, that is. Now, many years and many medical advances later, views are shifting about the virus – yet a stigma persists.
So does HIV/AIDS. According to Canada Public Health estimates, there were 1520 new cases of HIV in Canada in 2020. With that said, over 6000 Canadians are currently living undiagnosed with the virus. Let that sink in.
Today (December 1) marks World AIDS Day, an ever-important occasion for the world to unite to show support for people living with and affected by HIV and to remember those who lost their lives to AIDS. While HIV has become completely manageable over the decades for those with it – and their partners – many misconceptions about HIV/AIDS persist, over 40 years into the epidemic.
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“There is a lot of misinformation about how HIV is transmitted, how it is treated and what HIV care looks like, who is affected by HIV, the difference between HIV and AIDS, and the list goes on,” says Roxanne Ma, VP of National Awareness Programs at the Canadian Foundation for AIDS Research (CANFAR). “A lot of Canadians also don’t know that HIV is still an epidemic in this country. Unfortunately, the further away from the AIDS crisis of the 80s we get, the more we find Canada’s youth are less informed and less prepared to prevent new HIV cases.”
Sex-ed class was very much taught through the lens of shame, fear, and abstinence
Myles Sexton (they/them, who is HIV+)
Sexton (32), who identifies as queer and non-binary and has been aware of their HIV+ since 2018, was admittedly once one of those less-informed youths. In fact, it took their diagnosis for them to truly educate themselves about it.
“I grew up in a really rural town in Nova Scotia, so sex-ed class was very much taught through the lens of shame, fear, and abstinence,” says Sexton. “Then you have to add the layer of being queer and non-binary on top of that, and there was a lot of shame there that created internal layers and barriers that you sort of hold within you. I was so afraid of even trying to acknowledge sexual health, based off of where I was from and my experiences as a queer person trying to live in this world. Sex was wrong and who I was as a person was wrong.”
As a result, Sexton admits they once held their own misconceptions about HIV/AIDS. “I think my only perception of HIV was someone who was living with AIDS, or who had passed away from AIDS,” says Sexton. “So, I assumed that those who had it had the bruising, and the sores, and were in the hospital and was like, ‘Well, I’m not sleeping with those people, so that’s not going to happen to me; I’m not going to get it.’”
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It was through a process of elimination via appointments and testing that Sexton was diagnosed with the virus after experiencing a lingering illness. Sexton hadn’t realized that they weren’t being tested for HIV during their visits to a walk-in sexual health clinic. “They were doing STI tests, but never taking blood,” says Sexton. “I didn’t realize that they needed to take blood for HIV tests. I was so young at the time and assumed they were testing for everything.”
After a few years of living with the virus and managing it with medication, Sexton took to social media to inform their followers of their HIV+ status in 2020.
“When I became undetectable through medication, that was the first step in healing – but it definitely wasn’t the hardest part,” says Sexton. “The psychological part was the hardest. Despite the advancements of medical science, the stigma of HIV/AIDS is still very much the same as what it was in the 80s. I think it was the psychological part of reclaiming my power and reclaiming my body again that inspired me to publicly share my status. I also didn’t want people to go through what I went through in not knowing. So, using social media and using my voice was my way of holding myself accountable and regaining my power to create change in this world.”
As they work to combat the misconceptions surrounding HIV/AIDS, Sexton experiences this stigma constantly. For example, they recently moved a couple of hours north of Toronto to a smaller city and had to find a new HIV specialist close to their new home. “I was going to get routine bloodwork done and had a nurse literally treat me like I had some sort of flesh-eating disease when she looked at my chart and had to take my blood,” they recall. “And she works in healthcare. But if it doesn’t impact them personally, people don’t want to educate themselves.”
Ma says that the lingering stigma is still the greatest challenge that Canada has surrounding HIV and our progress to eradicate new transmissions in the country. “Stigma stops people from getting tested; from wanting to learn their status; from accessing care and treatment,” says Ma. “We need to normalize HIV and STBBI testing in Canada and continue to raise awareness of the virus.”
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Recently, CANFAR helped fund the research study that lead to the approval of the first HIV self-testing kit in Canada. “This has been a gamechanger in elevating access to testing, which is one of the strongest tools we have to stop new HIV cases in Canada,” says Ma. “We also opened our first rapid testing laboratory at HQ Toronto in 2022, which conducted over 56,000 HIV and STBBI tests in its first year. And we’ve recently invested in Our Healthbox, which is a smart vending machine that provides HIV self-testing kits, sexual health, and harm reduction supplies in priority neighbourhoods across Canada.”
In an era of app-facilitated hook-up culture – where the lack of a phone number may make it tricky to follow up with past sexual partners in the event of an HIV+ diagnosis – accessible testing remains more important than ever to stop the spread of the virus, highlights Sexton.
“As a first world country, Canada is super behind,” says Sexton. “In terms of new cases, we are actually one of the highest grossing countries in the world, which is bananas to think about given our level of healthcare we have available. But there’s a lack of funding from the government side in trying to eradicate this. There’s more of this view of, ‘Ok, well they can just go on a pill and be on a pill for the rest of their life, but that’s not a solve; that’s just fuelling pharma’s pocket. We need to find a way to end this. This comes down to access to testing and self-testing kits.”
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Sexton says that the self-testing kits were historically around $30, which is out of reach for some people. With that said, the Canadian government recently announced a plan to have thousands of free testing kits distributed across the country, which can be ordered online here.
Sexton also says that we also need better access to rapid testing clinics like the one CANFAR opened in Toronto. “I had to wait for almost a month for my full diagnosis, whereas the rapid testing clinics will give you a diagnosis within 24 hours and hook you up with support right away, so this decreases the exposure period,” they say.
That’s not to say there isn’t room for optimism in Canada’s fight against HIV/AIDS. The country has a goal of ending AIDS as a public health threat by 2030. Leading the way on this agenda, CANFAR has invested over $26 million across over 550 research projects since its inception in 1987 and continues to raise countless dollars for the cause.
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“Research we have funded has helped deliver new advancements in testing, treatment, and care for people living with HIV,” says Ma. “We should be very optimistic about the future of the virus, but we need the political and social will to get there. HIV/AIDS is an easily manageable condition today – typically either a daily pill or bimonthly injections. People living with HIV who achieve an undetectable viral load cannot pass the virus to sexual partners (U=U). A person living with HIV with a suppressed viral load can live a healthy, long, active life. PrEP and PEP [HIV treatments] have become much more commonly available, helping to abate new infections.”
But before you think the virus can’t impact you directly, consider that the face of the disease is changing, statistically speaking. For example, one in four new cases each day are in women – something that wasn’t the case before. “It’s no longer a gay man’s disease – not that it ever really was,” says Sexton.
As they highlight, Indigenous people are particularly at risk. “A quarter of Canada’s HIV cases are in Indigenous people, who represent such a small population of the country,” says Sexton. These two marginalized communities – women and indigenous people – are being heavily affected by HIV.”
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As Canada continues to plough ahead in its fight against the virus, Sexton will continue using their voice and ever-growing platform as a champion of the cause (and for fabulous fashion) on World AIDS day and every day.
Editor's note: This week we kicked off a WORLD AIDS DAY campaign initiative across all of our Stamina Group properties, with a high-impact takeover ad campaign, in support of CANFAR. With that, later this month, we have secured a billboard on the Gardiner featuring Myles Sexton. (Key photo: Myles Sexton, shot by Nick Merzetti)
