One in 120 adult Torontonians are living with HIV. Despite advances in treatment, the effects of this disease are still enormous. So where has all the outrage gone?
By the time he was a teenager, Christian Hui was an expert at putting condoms on bananas. A shy, socially awkward kid with an accent that betrayed his childhood in Hong Kong and fey mannerisms that betrayed his latent queerness, Hui, who moved to Seattle when he was 12, felt like a loner. Despite that sense of alienation, he became a peer sex educator in his teens, regularly talking to other kids about sex. “It’s kind of ironic,” he says now, with a wry smile. “I’d go around to classrooms talking about how to put on a condom when I didn’t even know how to put one on myself.”
Now 35, Hui (pictured below) was just a toddler in 1981, when the first cluster of pneumocystis carinii pneumonia—the respiratory condition that was one of the early telltale symptoms of AIDS—was reported in Los Angeles. (HIV, the virus that causes AIDS, was isolated by researchers in 1983 and formally named three years later.) Like many of us, Hui is part of a generation—post-GenX, pre-Millennial—that grew up inundated with information about the terrifying spectre that was AIDS. Hui’s first introduction came via television. “It was back in Hong Kong, probably around the mid-’80s,” he says. “If you get AIDS, you’ll die. That was the fear message. That really stayed with me.”
Still, when he began to explore his own sexuality in university during the late ’90s, all those lectures he gave as a teenager didn’t necessarily dictate his own actions. After moving to Toronto in 1999, he started experimenting with substances—weed, meth, ecstasy. He often engaged in unsafe sex, especially when he’d been messing around with drugs. Yet he was diligent about getting himself tested for HIV every six months.
And then, in 2003, he tested positive. “The world stopped,” he says. “I shouldn’t have been shocked, because I knew I was doing all these things, [but] I thought for some reason that I would not get it.” He was consumed by the thought that he was going to die. He grappled with depression and turned to meth, using heavily for seven years before he sought help at the Centre for Addiction and Mental Health. “Coming out of the treatment program at CAMH, I felt pretty good,” he says, “because I wanted a new life.”
Unlike his predecessors diagnosed in the ’80s, Hui had the choice to start fresh. He now works for the Asian Community AIDS Services, the organization he credits with saving his life; he is completing a social-work degree at Ryerson; and he has a loving partner who’s also involved in HIV/AIDS support and advocacy. He takes three pills a day—and notes that the onus of remembering meds “can be very anxiety-provoking”—but his drug regimen is simpler and vastly less toxic than than the ones prescribed in the past.
Three decades after the formation of the AIDS Committee of Toronto, and 25 years since the first celebration of World AIDS Day on Dec. 1, 1988, HIV/AIDS is a remarkably different condition. The early panic has subsided. Most days, it can be easy to forget that it’s still a brutal, debilitating disease with no known cure. Most days, it doesn’t even register that one in every 120 adult Torontonians is living with HIV. That people, in this city, are still dying.
The recent marking of the 30th anniversary of the disease heralded what some consider a premature AIDS nostalgia: a flurry of looks back at the acme of the crisis—the period between 1985 and 1996—told in a tidy, often vaguely triumphant narrative.
In 2012, U.S. filmmaker David France released How to Survive a Plague, a steely, Oscar-nominated documentary about the efforts of activists during the early years of the epidemic. Dallas Buyers Club, Montreal director Jean-Marc Vallée’s highly fictionalized retelling of how a straight Texas bro fought for access to medication, is now in theatres. Next year brings Ryan Murphy’s TV adaptation of Larry Kramer’s The Normal Heart, the potent 1985 play about the rise of HIV/AIDS in New York City that’s been mounted twice in Toronto in the past several years. Angels in America, Tony Kushner’s epic six-hour theatre melodrama about Roy Cohn, closeted Mormons, and death, sold out its run at Soulpepper earlier this year and will be remounted next season.
A generation removed from the worst ravages of AIDS, young audiences absorb these stories without context. Gay men born after 1990 didn’t bury dozens of their friends and lovers, and because of AIDS, they came of age without a cohort of older mentors. Given that, the rush of nostalgia makes sense. These AIDS narratives are period pieces, documents of a history that seems very much behind us. And therein lies the trouble. Too often, AIDS nostalgia suggests the battle has been won, when, in fact, it’s actually just been abandoned.
But the stakes are still frighteningly high. AIDS has shifted from a very specific fatal illness to an amorphous chronic condition. HIV-positive people may be living longer, but we still don’t fully understand the long-term effects of either the virus or the drugs used to treat it. “Some researchers have found that HIV-positive people have accelerated aging,” Hui says. “We tend to age 10 to 20 years faster than the ‘normal’ population.” According to the Toronto AIDS hospice Casey House, those living with HIV are susceptible to a host of other medical issues, from osteoporosis to liver and heart disease, and HIV can double or triple a person’s chances of getting cancer.
In the GTA, it’s estimated that two people are infected with the virus every day, and more than a quarter of new cases are diagnosed in people under 30. In 2012, nearly 20 per cent of new infections in Toronto were among women. As people live longer with HIV, the number of those affected is multiplying (by 2015, it’s estimated that half the people in Canada living with HIV will be 50 or older). Meanwhile, the face—or faces—of the disease has changed dramatically.
In many ways, the radical shift in attitudes, demographics, and treatment options for the disease have made it seem less urgent and more diffuse, complicating attempts at public education. Some 75 per cent of Ontarians claim they know “little about the realities of HIV/AIDS treatment.” In Canada, poverty is one of the major factors that determine whether you’ll contract HIV and whether you’ll die from it if you do. First Nations people living on reserves and undocumented immigrants have limited access to treatment. In Toronto, the highest rates of infection outside of the Church-Wellesley corridor occur in poorer areas—Moss Park, St. James Town, Mount Olive—where there are higher concentrations of street drugs and sex workers. (Curiously, however, the neighbourhood with the most reported cases among women last year was the Annex.) HIV still comes with significant stigma for those who carry the virus. And in the wake of a sobering Supreme Court ruling in the fall of 2012, the criminalization of HIV status non-disclosure (see sidebar on page 3) is currently one of the most pressing human-rights issues for people living with HIV in Canada. So where has all the outrage gone?
Next Page: Why AIDS nostalgia doesn’t work.