February 17-23, 2005

city beat

Abetting AIDS

HIV outreach workers fear the disease spreads easier thanks to conspiracy theories.

by Doron Taussig

Is there a government conspiracy surrounding the HIV virus? A surprising number of callers want Gary Bell to address the question.

Bell, director of Philadelphia-based Blacks Educating Blacks About Sexual Health Issues (BEBASHI), has gone on the radio several times recently to talk about HIV prevention. During each show, however, people change the subject to conspiracy theories. "HIV was created by the government," they say, or "The government has a cure and isn't telling anyone." Some people believe the big pharmaceutical companies have a cure but are making so much money off of HIV drugs that they don't want to release it (and they often cite Magic Johnson's excellent health as proof). Others believe that the disease is being used quite intentionally as a weapon against homosexuals and blacks.

"For years, people in the [HIV prevention] field have discounted these kinds of conspiracy theories," says Bell, who has taken his message to WURD and WHAT in Philadelphia and Atlanta's Radio One. "We have to take them seriously. This is a barrier between what we're telling people and what they're hearing."

HIV and AIDS are quietly ravaging the black population. Blacks account for 12 percent of the total national populace, but about 40 percent of diagnosed AIDS cases. In the nine-county Philadelphia metropolitan area, some 23,000 people have been diagnosed with the disease (65 percent of them African-American), 9,000 of whom aren't receiving primary medical services, says Dr. Kathleen Brady, an epidemiologist for the city's Health Department. Now, activists are voicing concern that conspiracy beliefs among blacks are becoming a barrier to prevention and treatment messages.

A study released at the end of January by the RAND Corporation, a nonprofit research organization, has called attention to the high percentages of the black population who subscribe to some form of conspiracy theory about HIV/AIDS (see graphic); a prior study conducted by the Philadelphia Health Management Corporation (with funding from the National Institute of Mental Health) found a similar trend among blacks in Philadelphia. The RAND study found that espousing conspiracy beliefs is correlated with not using condoms. But does the belief that HIV was created in a government laboratory really contribute to the decision to forgo condoms? Philadelphia HIV outreach workers say people occasionally cite the theories as a reason — or an excuse — for engaging in unsafe activity.

"It moves the target from dealing with your shit ... to displacing the blame," says Val Sowell of Philadelphia FIGHT, an AIDS service organization.

For the most part, activists say these conspiracy beliefs are symptomatic of a larger lack of trust between many blacks and medical or governmental institutions.

"It's not a one-to-one thing," explains Jacob Levenson, author of The Secret Epidemic: The Story of AIDS and Black America. People don't decide to ignore advice because of a theory they heard; rather, they think "going to these doctors is a terrible experience and I don't know if I trust them."

There is, of course, historical precedent for this sentiment. Outreach workers frequently find themselves discussing the Tuskegee study, a medical trial conducted by the U.S. Public Health service between 1932 and 1972 in which the agency withheld treatment from a group of poor black men with syphilis to learn more about the disease. The fear is fanned, especially among poor blacks, by the actual experience of inadequate treatment. Though the distrust appears to span different demographics among the black population; the PHMC study found no differences according to education or income. Conspiracy theories both derive from, and add to, this larger sense of wariness.

Outreach workers cite several ways that pervasive distrust affects their efforts to fight HIV/AIDS. Lee Carson, a research assistant at PHMC, has witnessed reluctance among blacks to participate in vaccine research for fear of being used as a guinea pig in an undisclosed experiment. Sharifah Linton, supervisor of prevention services at BEBASHI, recalls college students declining to get tested because "you don't know what they're doing to you." Bell has had people refuse to believe him about how the disease is transmitted. He says that the government casting doubt on the efficacy of condoms doesn't help his cause.

"You'll see people who will jump in bed and have unprotected sex" with a stranger, he says, but then refuse to work with someone with HIV. There's a greater distrust of white outreach workers, Bell adds, but black workers "are not given a free pass either."

Kim Smith of the New Pathways Project, an HIV-prevention outfit, says this disconnect has become a major obstacle. "This thing is real," she says. "Getting through the barriers is sometimes hard."

At the same time, several workers cautioned that these concerns shouldn't be allowed to overshadow some of the other factors impeding successful prevention and treatment, such as social stigmas and misconceptions about the disease.

"Not wanting to be perceived as HIV-positive," comes up as a reason for not wearing a condom far more often than not believing that condoms work, says Lee Carson. And a preconceived notion of who is at risk is a far bigger obstacle to getting people tested than a fear of being used as a guinea pig, according to Dorena Kearney, executive director of Colours, a group providing HIV prevention education to sexual minorities and women of color. People think, "I'm not gay, I can't get it," she says.

As for the conspiracy theories themselves, Bell says that the best way to approach them is to try to move past that part of the discussion to the more immediate concern of stopping HIV's spread.

"I don't know how [the virus] got started," Bell says. "But meanwhile, back at the ranch people now are not getting infected by the government. It doesn't matter where it came from."

But there's a thin line between "moving past" the theories and dismissing them — a difficult balance for an outreach worker to achieve.

"People don't like to feel ignored," warns Linton. "They'll think, "You're just like the rest of them.'"

Editor's note: Doron Taussig was formerly employed by the Philadelphia Health Management Corporation.

Results from the RAND study

A national telephone survey of a scientifically selected random sample of 500 African-Americans ages 15 to 44 from around the United States:

About 59 percent agreed with the statement that "a lot of information about AIDS is being held back from the public."

Exactly 53 percent agreed that "there is a cure for AIDS, but it is being withheld from the poor."

Nearly 27 percent agreed that "AIDS was produced in a government laboratory."

About 16 percent agreed that AIDS was created by the government to control the black population.

About 15 percent agreed that AIDS is a form of genocide against African Americans.