Plane crashes get attention. Full-blown plagues at the height of their fury may also get attention. But illnesses that quietly kill poor andmarginalized people do not.
Here in North America, twenty years after its first official notice, thedeath rate of AIDS has slowed and the disease has become one that affectsprimarily the poor and disenfranchised. That means less attention. And alessened sense of urgency to promote care and prevention.
"I worry that things will stagnate where they are right now, sort of a half solution," says Martin Delaney, founding director of Project Inform, an AIDS advocacy organization in San Francisco. "I worry that AIDS will continue to pick people off. Not in the vast numbers each year that it once did, but in steady numbers over time - and that it will still be a life-threatening condition for those who have it."
Protease inhibitors, the expensive new class of drugs introduced in 1996,have been useful "for pulling people out of the fire," Delaney said in aninterview. "But the thought of keeping people on them for thirty or fortyyears is inconceivable. These are radical chemotherapy."
It's alarming to think that stagnation is possible after only twenty years. On June 5, 1981, Morbidity and Mortality Weekly Report, published by the U.S. Centers for Disease Control, noted that two doctors in Los Angeles reported an outbreak of Pneumocystis pneumonia (PCP) in five otherwise healthy men. Two had already died from the pneumonia, which until then had typically affected the elderly. The only thing the men had in common was their homosexuality.
AIDS is like heart disease, says Vancouver epidemiologist Clyde Hertzman.Both entered the population in North America through specific at-risk groups: AIDS through the gay population and intravenous-drug users, while heart disease first affected the privileged who lived long enough to develop the illness. Both conditions travelled down the socio-economic ladder to establish a clear gradient - poorer people are disproportionately affected. AIDS established such a gradient "quickly and dramatically," says Hertzman, a professor at the University of British Columbia, whose work focuses on relationships between income and illness.
In the early years, AIDS didn't get a great deal of attention in themainstream media. During the first two years of the epidemic there was nofront-page story about in the trend-setting New York Times, noted author James Kinsella in his 1989 book Covering the Plague: AIDS and the American Media. (In contrast, within the first week of the 1976 outbreak of a mysterious disease among middle-aged male members of the American legion, there were three front page-stories in the newspaper, and ten inside articles.)
As the toll from AIDS increased, the grassroots activism in affectedcommunities successfully got attention and put pressure on the health-careand medical establishment for AIDS care and treatment. At the time, gay men, the hardest hit, were able to plug into already organized and existing political groups and social spaces for education, activism and fundraising. In Canada, AIDS Action Now! emerged in early 1988.And, in 1989, Canadian and U.S. activists stormed into an international AIDS conference in Montreal, drawing world attention to the slow pace of research and needs of the afflicted.
Many of the Canadian activists from that time, well-connected and articulate professionals, are burnt-out or dead. Today's increasingly affected groups - people living in poverty and people with drug addictions - often have less experience with political activism, fewer connections and less clout to draw attention to their plight. For many, AIDS is just one more difficulty in their already problem-ridden lives.
In its latest report on HIV/AIDS, Health Canada warns of the "increasing urgency" of the epidemic among Aboriginal populations. Reported prevalence of HIV among that population increased ninety-one percent from 1996 to 1999, from 1,430 cases to 2,740 cases. And new infections among intravenous-drug users in Canada, while down slightly in 2000, remain "unacceptably high," according to the report. The epidemic is "active and unstable" among drug users in Quebec and eastern Ontario, researchers told participants a recent Canadian AIDS conference.
Meanwhile, advocates like Delaney of Project Inform are worried about howpharmaceutical companies are reacting to the changing profile of the AIDSepidemic. Already, there is some evidence of companies abandoning researchin the area, he says. Drug companies invest in research and drugs that arelikely to be viable and profitable, and sometimes abandon useful drugs that don't make money.
This has been well documented by MÃ©decins Sans FrontiÃ¨res (MSF/Doctors WithoutBorders), and indeed gave rise to that organization's Campaign for Access to Essential Medicine. MSF lobbied for years to get eflornithene, a drug to treat sleeping sickness in Africa, back in production. The drug company Aventis had ceased production in 1995 because the drug wasn't making a profit. Earlier this year, production was startedup again. The re-launch, however, coincided with a newly discovered use for the drug in the developed world: It is a key ingredient in a cream to remove women's facial hair.
In the developed world, AIDS is an epidemic at the margins and amongminorities. In Africa and parts of the developing world, it is a catastrophe right at the centre of societies. The only good news on the horizon is that AIDS activists from around the world are linking up with each other. They're working together - and, one hopes, fighting stagnation.
Ann Silversides is a freelance writer and broadcaster in Toronto. "Sex, Death and Grief," her three-hour radio documentary on AIDS and its impact on gay men, aired on CBC's Ideas program in 1997. Ann subsequently wrote a regular column on AIDS-related issues for Xtra!, and has spent a lot of time in the Canadian Lesbian and Gay Archives researching the emergence of the AIDS epidemic.
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