In 1994, Louise Binder received a death sentence: she tested positive for hiv. Her doctor gave her between two and four years to live and prescribed zidovudine (azt). Sick, constantly tired, and overwhelmed, Binder eventually quit her high-profile corporate job in Toronto and began preparing for the inevitable. Then, in 1996, something unexpected happened. Medical researchers in the United States began proclaiming that they had found a cure for aids through combination treatments of antiretroviral drugs. There was some skepticism about aids patients “rising Lazarus-like from the dead,” Binder recalls, “but there were too many stories, and we met too many people from the US who had actually risen, and everyone began to believe. Many, many people were euphoric.”
Binder’s own doubts lingered, but with a new lease on life she turned her energies to activism, co-founding the Canadian Treatment Action Council to advocate for better access to hiv/aids drugs. However, while often effective, antiretroviral drugs proved not to be a cure-all. To this day treatment side effects, a lack of drug availability, and, most critically, the virus’s evolving resistance to drug-treatment programs mean that people still develop aids and die. For Binder, still fighting hiv twelve years after her own diagnosis and considering herself one of the lucky ones, the problem is not restricted to the limitations of aids treatments. “It seems as if Canadians think aids ended in the 1990s, that the epidemic ended,” she says. “It is astonishing. Nothing could be further from the truth.”
Between 1995 and 2000, the annual number of positive hiv tests reported to federal health officials did in fact drop from 2,992 to 2,114 cases, and it appeared that in Canada, at least, a devastating plague was under control. But new evidence suggests that the declining numbers belie a more ominous truth. Public Health Agency of Canada (phac) researchers believe that many hiv infections go unreported, and that more than 50,000 Canadians are infected with the virus. Because testing is infrequent and irregular, it is estimated that nearly one-third of Canadian hiv carriers don’t know that they are potential aids victims and that they could transmit the virus to others.
While the long incubation period — the approximately ten-year lag between hiv infection and the onset of recognizable aids symptoms — masks hiv/aids prevalence, more worrying still is the fact that the virus is moving into whole new populations. After 2000, the number of reported cases began to rise, and in 2004, the most recent year for which complete data are available, 2,547 new infections were reported to phac. In cases where the exposure category was known, 44 percent resulted from male homosexual sex, still the largest risk factor, but rates rose most dramatically among heterosexual transmissions, which accounted for 31 percent of all positive hiv tests, almost double the percentage of a decade earlier. The latest statistics show that women make up approximately one-quarter of all new diagnoses and more than 44 percent of newly diagnosed adults under the age of thirty.
It is accepted that testing data underestimate the extent of hiv infection and so researchers must create epidemiological models to get a better picture of the advance of the disease. Dr. Robert Remis of the University of Toronto is a preeminent Canadian scientist in this field. He has produced detailed models for Ontario, home to over 40 percent of Canadian hiv cases, and his assessment is blunt: “The bottom line is that the epidemic is not under control. Prevalence [the total number of people living with hiv] increased 36 percent from 1998 to 2003.” Remis’s models indicate rising rates of infection among four distinct groups: immigrants from Africa and the Caribbean, homosexual males, intravenous-drug users, and heterosexual Canadians.
Since January 2002, all immigrant and refugee applicants to Canada have been tested for hiv as part of routine medical assessments. In June of that same year, however, the new Immigration and Refugee Protection Act came into effect. That act has a compassion clause stating that refugees and family-class immigrants can no longer be denied entry to Canada if hiv-positive. According to Citizenship and Immigration Canada (cic), almost 800 hiv-positive applicants were accepted into Canada in the first two years of the new regulatory regime. Most of these new entrants were refugees from Africa, and they continue to arrive. Remis believes that the number of hiv-positive immigrants from hiv-endemic countries now resident in Ontario increased by 86 percent between 1998 and 2003. In short, Canada is admitting hiv-positive immigrants, with the result being — because they are tested upon entry — a steady increase in the total number of all positive hiv tests reported to phac.
Given these numbers, it would be convenient to argue that the indigenous hiv/aids situation is generally under control and that the problem lies at the gates of cic for allowing hiv-positive immigrants into the country. Yet Remis maintains that roughly one-third of the positive tests in communities of immigrants from hiv-endemic countries occur in people who were infected on Canadian soil. In established immigrant communities from the Caribbean, this figure is as high as 50 percent. Not surprisingly, hiv transmission does not stop when an immigrant arrives in Canada; the newcomers are spreading the disease in their adopted country.
It is a marked shift from the early years of the epidemic, when gay men, or “men who have sex with men,” to use the more inclusive term favoured in the hiv/aids literature, accounted for over 90 percent of hiv infections in Canada. As that community mobilized to fight the disease, the infection rate began dropping rapidly, such that by the mid-1990s researchers estimated that transmission by injection-drug use was nearly as common as homosexual transmission. Since that time, though, homosexual male infection rates have risen, and again represent by far the highest risk category — men who have sex with men now account for twice as many new hiv infections as the next highest-testing risk group. In adult males, 58 percent of new infections are a result of homosexual contact.
A number of factors are probably contributing to the resurgence of hiv in the gay community. Richard Elliott, deputy director of the Canadian hiv/aids Legal Network, points to generational differences between gay men. “Younger gay men have grown up when there was never an age before aids. [For them] there wasn’t this tidal wave of dying friends and lovers that radically affected the community’s consciousness just as it was coming into political liberation.” He worries that a younger generation of less-aware gay men might now be taking too cavalier an approach to sex. Remis agrees and adds that whilemost gay men employ safer-sex practices, roughly 15 to 20 percent do not, and this minority is thwarting the gay community’s fight against hiv/aids. “Being human,” Remis says, “if it seems like a manageable disease and not a death sentence, people are perhaps less likely to be careful.”
Homosexual males and immigrants from countries where hiv is endemic are both high-risk groups that are relatively easy to define. However, John Maxwell, director of communications and community education for the aids Committee of Toronto, also worries about the rising number of infections among people who don’t seem to fall into any clearly demarcated risk category. In Ontario, the number of people infected through heterosexual contact, excluding those from hiv-endemic countries, is believed to be increasing by about 10 percent a year, and only half of those infected in this group know they are hiv-positive. Many of these people contracted hiv through sex with a member of a known risk group, but the ultimate origin of an increasing number of infections is simply untraceable.
“What it suggests is that the epidemic is expanding more broadly into the community,” says Maxwell, speaking with the brusque, forceful tone of a man who’s been on the front lines of the struggle against aids for many years. “You’re not a drug user, you’re not from an endemic country, you’re not a partner of any of those people, you’re not a man who has sex with men, you’re not a partner of a man who has sex with men. You have obviously been infected through sexual relations but you can’t pinpoint that a partner or something they’ve done would have increased their risk.” Indeed, the heterosexual component of the epidemic in Canada is so poorly understood by researchers that even finding a name for this category of infection is problematic: phac uses the cumbersome definition, “if heterosexual contact is the only risk factor reported and nothing is known about the hiv-related risk factor(s) associated with the partner.” Others use the contradictory category “heterosexual, no risk.”
What is clearly recognized by scientists and activists alike is that hiv/aids continues to be a disease of the poor and the marginalized in Canada, as it is everywhere in the world. Esther Tharao, co-chair of the African and Caribbean Council on hiv/aids in Ontario, asks simply: “If you look at the people who are infected by hiv in Canada, what does it tell you? Who are they? It’s men who have sex with men, it’s aboriginal people, it’s now black people, it’s IV-drug users, and it’s people who are homeless and living on the street. What do they have in common? They are people living on the margins of society.” Tharao, who is originally from Kenya, paints a picture of socially stigmatized young gay men driven to anonymous unsafe sex; African and Caribbean immigrant women who lack the support and resources to insist that their partners use condoms; or intravenous-drug users who have more pressing threats to their survival than a disease that might kill them in a decade. Her point about the most marginalized in society being the most afflicted is dramatically illustrated by the case of aboriginal Canadians. While aboriginals constitute just 6 percent of the population, they make up about 15 percent of those living with aids in provinces that report ethnicity in hiv/aids statistics to phac.
A decade after the introduction of lifesaving antiretroviral treatments, the medical and sociological research is clear: people who are poor or homeless or uneducated or living in a community where hiv infection is stigmatized are less likely to be tested for hiv and less likely to stay on the strict drug and monitoring regimes necessary to stave off the onset of aids. The result: in 2004, non-white Canadians accounted for 40 percent of all aids diagnoses. And yet, compared with many other diseases — those crossing class lines or those afflicting the middle and upper classes — scant attention is being paid to aids. “Marginalized people aren’t important,” says Binder, who is now co-chair of the federal Ministerial Council on hiv/aids. “That’s the reality.”
For activists like Binder and Tharao, this is both the crux of the problem and the link between the Canadian and global hiv/aids epidemics, between Africans mired in poverty and Canadians fighting the same virus in one of the richest countries in the world. With hiv infection still deeply stigmatized and with inequitable access to education, health care, and economic opportunities, hiv is free to spread among the most marginalized. Perhaps if the virus passes from the fringes of society to its heartier core we will be moved to tackle this scourge more aggressively at home and abroad. Until then, the epidemic marches on.