Canada has every tool it needs to end the spread of HIV—but it hasn’t

A 15-year-old walks into his principal’s office and says he wants to stop HIV.

It sounds like the start of a joke. That’s probably why Shamin Mohamed Jr.’s principal laughed—and why the Toronto high school’s vice-principal thought the teen was up to no good.

But Mohamed was serious. He’d read articles about young people getting sick and knew that his own peers were, behind their parents’ prying eyes, sexually active and just as susceptible to the virus. 

In spite of, or perhaps to spite, his school’s administration, Mohamed reached out to some older friends—18-year-olds who could legally sign official documents—and formed LetsStopAIDS: A nonprofit dedicated to giving young people like him the information and support they need to prevent new HIV cases. 

That was in 2004. Today, Mohamed has been at the helm of the organization longer than he hasn’t. Yet, headlines about HIV among young people feel frozen in time.

“Since 2014, Canada’s HIV transmission rates have been on a steady rise, and nearly a quarter of them are coming from young people,” he tells Xtra just weeks before LetsStopAIDS’ inaugural youth-HIV leadership conference (before that, rates had been going down from a 2008 high.) Though almost every age group has seen an increase in cases, HIV-positive 15- to 29-year-olds are the fastest growing demographic. Of them, more than 60 percent are gay, bi or men who have sex with men.

The conference—moved online due to COVID-19 restrictions—was billed as a first for Canada, aiming to reignite awareness of the issue among a younger demographic. It also came at a pivotal moment: Mohamed says it’s not too late to turn the trend around.

“These stats, they’re an immediate wake-up call,” he says. “In Canada, we’re on a gradual wave of HIV progression.”

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‘It’s about taking responsibility’

Mohamed and his organization rely on data from the Public Health Agency of Canada (PHAC). As a federal institution, PHAC collects information related to HIV transmission from the provinces and territories, releasing findings every few years. PHAC’s data is a primary tool for tracing Canada’s handling of the virus, despite criticisms against it (information on race, for example, is inconsistently gathered, further marginalizing Black and Indigenous communities dealing with a disproportionate number of cases). 

A PHAC spokesperson tells Xtra that its latest HIV report will be ready for January 2021, but there’s reason to be anxious for it. Its last publication—reflecting cases until the end of 2018—revealed that the number of new HIV diagnoses in Canada jumped 25 percent from 2014 to 2018, with young people being the fastest growing cohort.

“In Canada, we’re on a gradual wave of HIV progression.”

It’s easy to look at those numbers and wag a finger. After all, young people were swiftly blamed for upticks in COVID-19 cases, labelled as partiers unable to control their impulses and assess risk. Why should this epidemic be any different?

But a growing number of researchers and advocates argue that any increase in transmissions reflect a failure of systems, not people. “It’s not about pathologizing or blaming people for doing the wrong thing,” says Dr. Darrell Tan, a Toronto-based infectious diseases physician and leading Canadian researcher in HIV prevention. “It’s about taking responsibility as professionals who work in this field and asking what we can be doing better to fix systems so that the overall result for people is one that we want.”

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‘An abject failure’

So what targets are we aiming for when it comes to HIV? 

In 2015, the federal government endorsed a United Nations and World Health Organization strategy to end the spread of HIV by 2030—but it came with benchmarks to hit. This year’s targets are referred to as “90-90-90”: Have 90 percent of people with HIV aware of their status, 90 percent of those aware receiving treatment and 90 percent of them achieving an undetectable viral load (meaning, there isn’t enough virus in the system to pass it on to someone else—what’s commonly known as “undetectable equals untransmittable,” or U=U). 

That focus on mass-treatment reflects two important realities about HIV: One, that there is no cure or vaccine, despite promising research into both; two, that treating HIV is nearly as effective as curing it—extending life expectancy and preventing its spread.

With rates on the rise, Canada will likely fall short of its 90-90-90 goals. An estimated 14 percent of people who have HIV in Canada don’t know that they do, and one in five people who do know their status aren’t accessing treatment—which means continued risks of transmission. Comparatively, six countries have achieved 90-90-90, including the United Kingdom. Though this doesn’t seem like many, hitting 90-90-90 would result in three out of every four people living with HIV achieving an undetectable amount of virus in their system—which two dozen more countries have achieved through other means, like better access to treatment.  

“What’s important to understand about HIV is that this is a battle we can win,” Dr. Tan says. “We have the tools to end this epidemic at our disposal. It’s kind of an abject failure in many ways that isn’t yet the case in Canada.”

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‘I’m not sure how to best help you’ 

When I call Wes Craven on the eve of Halloween, he’s preparing for a horror movie marathon— Child’s Play, I Know What You Did Last Summer and the Rob Zombie remakes of Halloween, among several others.

Craven, of course, is a pseudonym—an homage to the famed slasher director. Though it’s been six years since his HIV diagnosis at the age of 24, the Aurora, Ontario, native isn’t yet ready to publish his status online. “It took a lot of self-work to become more comfortable with the fact that my diagnosis wasn’t who I was, it was just something I had to live with,” he says.

The movie marathon and Xtra interview were welcome distractions from a stressful career transition. Craven is breaking into social work, a move largely inspired by his diagnosis. “I got a call from my general practitioner one night and she asked if I could come into the office before opening hours,” he explains, recounting the experience of waiting outside locked clinic doors before the sun came up, around 6:30 a.m. “I know that she was trying to do me a favour by calling me in before operating hours, but I look back now and see how it played into the stigma that HIV is something to be ashamed of.” 

Craven had questions about his diagnosis, but his doctor wasn’t prepared to answer them. “She said, ‘I’m not sure how best to help you,’” before making appointments for him at a downtown Toronto hospital. 

Unfortunately, Craven’s experience isn’t unique. 

“Information is harder to spread when there’s stigma attached to it.” 

“Most Canadian medical schools don’t train doctors in how to effectively engage folks, especially young and racialized people, about their sexual health,” says Nakia Lee-Foon, a University of Toronto researcher focused on the sexual health literacy of young African, Caribbean and Black men who have sex with men. She often hears stories from these men about doctors not knowing enough about HIV prevention, or making problematic assumptions without properly listening—such as assuming that, as Black or gay men, they’re having unprotected sex.

“The curriculum that physicians go through needs to be revamped so there’s a queering of the health care system,” she says, adding that it should include queer and anti-bias training for nurses, administrators and other health care workers.

When doctors and nurses don’t know how to talk to their patients about HIV, it forces young people to look for the information elsewhere, often to their detriment. Lee-Foon calls school-based sex education, for example, “a hot mess”—citing that most provinces and territories use sex-ed curriculum from the early 2000s, with some dating as far back as 1995. Manitoba’s curriculum still calls HIV fatal, despite the fact that today’s treatments have significantly extended life expectancy. In Alberta’s primary lessons on STIs, abstinence is the only method of prevention explicitly mentioned—an approach that just doesn’t work.

In 2019, HIV legal networks met the Ontario government in court when the province removed HIV as a topic from their health curriculum (as well as LGBTQ2S+ sex). These battles create an environment where teachers are uncomfortable addressing the topic, and students graduate with little to no knowledge of HIV or ways to protect themselves.

Turning to the internet is also a mixed bag, explains Lee-Foon. Reputable sites run by public health agencies often don’t use the language that young people would, meaning those results sink further down an online search. “What’s missing is the active translation of information to folks in a way that one, they’ll understand, and two, that they’ll take up,” she says.

Information, however, is harder to spread when there’s stigma attached to it. 

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‘It’s like putting a gun to your head’ 

Aside from outdated education systems, other factors make young people afraid to ask about HIV. Some don’t want to come out or avoid being perceived as homosexual. Canadian laws continue to criminalize people who are HIV-positive. A lack of resources in other languages allows cultural pressures or myths to persist. And compounding judgments around HIV, group sex and drug use still flourish today. 

For the men Robin Robinson works with, avoiding conversations about HIV are sometimes because of all of the above. 

Robinson, a program coordinator at the Black Coalition for AIDS Prevention, says it’s important to remember that progressive bubbles of queer sexual liberation are just that: bubbles. For many, especially those who live outside a downtown area or in communities of colour, knowing your HIV status is akin to “putting a gun to your head”—facing threats of violence or ostracization.

“People are fearful of coming into spaces to get tested, access services and talk about engaging in PnP,” says Robinson, using a term for the combination of drugs and sex, “party and play,” that can help people overcome internalized homophobia, increase sexual longevity or foster a deeper sense of intimacy. HIV-positive queer men report engaging in PnP six times more often than HIV-negative men, and beyond shared needle use, using can lower inhibitions and sidestep conversations about status and safety.

This bias prevents people who are aware of their HIV status from asking for help, which makes stigma—along with factors like housing and income insecurity—also among the main reasons why people don’t access treatment and aren’t able to become undetectable.  

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‘Not everyone has access to these tools’

How, then, do health care professionals and HIV organizations reach young people who have been told nothing—or in some cases, the wrong thing—by teachers, doctors, parents and online chat rooms? How do you talk about sexual health in systems also dealing with bias around race, geography and substance use? 

It’s a big challenge, but one for which we’re not entirely ill-equipped. “Right now, we have all the tools needed to stop the spread of HIV in Canada completely, but not everyone has access to those tools,” says Sean Hosein, the science and medicine editor at CATIE, a national source for HIV and hepatitis C information. 

Principle among these tools: HIV testing and pre-exposure prophylaxis, better known as PrEP.

On testing, Canada has made some great progress of late. In early November, Health Canada approved its first HIV self-testing kit, which has the potential to bypass privacy concerns or geographical barriers. If American kits can be used to compare, these home tests could run as much as $60 for a single use—but organizations are already mobilizing to provide a first wave of 60,000 kits to queer and other at risk groups for free, and advocates are calling for them to be subsidized when the kits hit the shelves.

“HIV prevention is something we should fully be funding out of the public purse because there is a universal benefit to society.”

This is a crucial time for self-testing to come to Canada, Hosein says. “People are afraid to go to a clinic or to their doctor because they’re worried about getting exposed to COVID-19 along the way.” Since symptoms of HIV can take as many as eight years to develop, testing is the only reliable way to know your status—by delaying testing, or mistaking early symptoms for COVID-19, people could be kept in the dark about their status.

When it comes to PrEP—the daily pill proven to prevent people from getting HIV—Canada’s story is rockier. To start, costs for this highly effective prevention tool are high. Even the generic version runs up to $280 a month. Some provinces, like British Columbia and Quebec, offer universal coverage of PrEP, while others, like New Brunswick and Alberta, offer coverage conditional on factors like age, income and risk level (for instance, with a score over 10 in this assessment). 

But as other countries have proven, removing cost barriers works. Making the drug widely available at no cost is cited as the reason the U.K. was able to hit its HIV transmission targets. When Ontario’s government made the drug free for people under 25 at the start of 2018, one study found that net new PrEP users doubled from 60 in December 2017 to 120 in January 2018, and continued to rise over subsequent months.

“HIV prevention is something we should fully be funding out of the public purse because there is a universal benefit to society,” says Dr. Tan.

But even when costs are removed, barriers persist. For instance, despite PrEP being covered for Indigenous communities through a federal program since 2016, uptake remains low. This is, in part, because the few PrEP advertisements that do exist are mostly privately paid for, centered in downtown queer neighbourhoods and can be vague (images of “racially ambiguous, super buff guys” urging people to get PrEP do little to shine light on the drug, says Lee-Foon). Bringing up PrEP could also be better encouraged among doctors who, under our current system, have little financial incentive to prescribe a drug that involves such regular check-ins with otherwise healthy young people. 

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‘This is not the end of your life’

Though it’s important to push governments for increased attention, investment and action when it comes to Canada’s growing number of HIV transmissions, there’s a broader dynamic at play. For the past eight months, people across the country have cancelled birthdays, weddings and other milestone events. They’ve dodged high-fives, resisted hugs and pushed the use of masks. And they’ve had tough but honest conversations about their health and the health of people around them. 

While COVID-19 is a very different kind of virus, experts and advocates say our response to it is something we can apply to our management of HIV. After all, stigma prevents testing. Ignorance prevents treatment. Bias prevents access. Tackling all three can create better outcomes for people—whether they are HIV-positive or negative.

“This is not the end of your life or a death sentence, this is just something you have to deal with,” Craven tells me of his HIV status, before joining his fiancé for the first movie of the night. 

And it’s also a challenge for our nation as well. We have the tools to deal with this—with compassion and understanding.