The Tuskegee Effect



Where the northern tip of Central Park brushes Fifth Avenue, AIDS educators from seven Harlem groups are combing the streets, trying to drive home the message of HIV prevention. They wish it were going better. Two months into an 18-week pilot program, “Test, Link, Care—A Community Partnership,” only half of those who took a free HIV test have come back for the result.

“You can’t prevent what you don’t know,” says Odell Mays, program officer at Community Access, a health-care communications firm, which is coordinating the TLC street outreach in East and Central Harlem. “It’s about protecting your loved ones,” he says. “You can’t do that if you don’t know [your HIV status].”

These outreach workers, and others around the city and state, are realizing that HIV prevention is no longer just about handing out health information but about understanding the barriers to acting on that knowledge.

But it’s not that simple in the black community, where there’s a great deal of medical mistrust—much of it related to the infamous 40-year government-funded Tuskegee Syphilis Study, conducted by the U.S. Public Health Service from 1932 to 1972, in which 399 black men in Alabama were purposely left to die from untreated syphilis.

“As long as we have people still alive who remember, who can say ‘Tuskegee’ and know what that means, we will have people who will have a problem [overcoming that mistrust],” says Deborah Levine, vice president of the health initiative at Harlem Congregations for Community Improvement (HCCI). “I tell people, ‘Yes, it did happen. Yes, the government did try to pull the wool over our eyes. But this is different, we want you to know your HIV status.’ ”

AIDS educators are fighting more than just the shadow of Tuskegee in black communities. Poverty, poor education, homophobia, widespread denial, hopelessness, and religious conservatism are a few of the reasons why many black New Yorkers are not protecting themselves, even though they may know how to. Add to this a lack of emphasis on, and resources for, prevention in the nation in general, and the result is deadly. So deadly, in fact, that in 1999, 51 percent of those newly diagnosed with AIDS in New York State were black.

Many black AIDS activists lay much of the blame for the crisis at the steps of the black church, long a cornerstone of the community, which some contend waited too long to flex its muscle on the AIDS issue. “Churches were feeling a tension between abstinence and prevention; they would say things like ‘We ain’t got any gay folk in our church,’ ” recalls Reverend James Booker, an AIDS outreach coordinator with HCCI and a pastor himself at Allen Temple A.M.E. in Mount Vernon, New York. “But now the choir members, deacons, and ministries are getting sick, and they don’t necessarily fall into the stereotype.”

HCCI has been training interested churches in its 90-member association on HIV issues and prevention, helping pastors, deacons, and other church workers become more compassionate volunteers and better AIDS educators. It’s a prevention message with a decidedly Christian feel, complete with scripture-backed slogans. “Everything doesn’t have to be so graphic or explicit to get your message across,” adds Levine.

Church leaders are realizing that you can’t save parishioners who are no longer alive. “Jesus didn’t say, ‘Now, wait a minute, how did you get leprosy?’ ” Booker points out. “It’s hard to run a revival in a graveyard. I think folks’ attitudes have changed.”

But getting the chair of the usher board to think that AIDS could enter her life—let alone her body—is a different story. Frankly, even though the disease has hit black communities hard, many deny that AIDS will ever touch them personally, even if a friend or relative is HIV-infected, or has AIDS, or has died from it. Some of that denial is internal classism, where middle- and working-class blacks believe AIDS is the problem of junkies and unwed mothers having lots of babies. Some of it is also the legacy of an early, effective HIV prevention campaign targeted to the gay community which left the lingering, incorrect perception that AIDS is a gay white disease.

From 1992 to 1993, a Brooklyn-based minority health education group, Health Watch Information and Promotion Service, set out to take the pulse of the black community about HIV prevention and AIDS. With funding from the state health department, the group assembled 24 focus groups, conducted 92 interviews with health professionals, and held follow-up sessions with black subgroups, including adolescents, gay and bisexual men, heterosexual men, substance users, and women to elicit feedback about its proposed prevention strategies.

However, Health Watch’s recommendations to the state’s department of health mostly went nowhere. But its findings are still valid for those picking up the AIDS prevention mantle in black New York. One common thread is how closely racism, poverty, low self-esteem, and hopelessness are interwoven into the AIDS crisis in the black community. If people don’t believe a positive future awaits, how motivated will they be to protect themselves or their partners?

Some black heterosexual couples are also locked into a disturbing catch-22. Health Watch’s project showed that most black women (one of the fastest-growing groups among new AIDS cases) want their partners to use condoms. But they may not speak up for fear of physical or verbal abuse, or losing their partners when so many young black men are caught up in the criminal justice system or otherwise ineligible.

“We have to recognize that in a society with few eligible men, she may sacrifice her self-esteem to keep that man,” says Dr. Norma Goodwin, president and founder of Health Watch.

Meanwhile, men in the study reported that they would use condoms if women said they had to. This request is even more important when men who cheated said that they rarely practiced safer sex—it ruined the moment and they weren’t about to discuss sexual history with a stranger.

This project underscored the fact that programs which, for example, help women assert themselves or leave abusive relationships will be more successful than ones that merely tell them to use condoms. Similarly, a trickle of HIV prevention programs look to stabilize people’s lives as a way to keep them HIV-free, realizing that often HIV is the last thing on the mind of someone who’s worrying about eviction, unemployment, domestic violence, or substance abuse.

“Simply zooming in on HIV/AIDS is not effective,” says Tokes Osubu, network coordinator at the East New York/Brownsville HIV Care Network, which coordinates services and programs for AIDS organizations in the area. “There are family issues here, like ‘I don’t have a job.’ ”

To deal with these issues, AIDS prevention programs will have to form partnerships with other service groups in the black community or expand their own offerings. It’s a huge, expensive mandate, especially in an era of disappearing AIDS funding.

But the good news: These shifts have already begun, although tentatively. For instance, the Caribbean Women’s Health Association in Brooklyn tackles immigration issues in addition to AIDS, since many immigrants are afraid to use public services, including health programs. And Harlem United works with agencies that distribute clean needles to gain access to drug users, and refers clients for legal, domestic-violence, and psychological counseling services.

“It’s really about that person as a whole, not just about HIV,” Osubu says. “They are a mother, a sister, a churchgoer; it’s about bringing all these things to the table.”


Part I: Emergency Call by Kai Wright
How AIDS Is Hurting Black Communities

Part II: Black, Gay, At-Risk by Kai Wright
Homophobia, Racism, and Rejection Fuel Rising Infections

Part III: The Tuskegee Effect by Kemba Johnson
For Blacks, a 28-Year-Old Study Is One of Many Barriers to HIV Prevention

Part IV: Double Jeopardy by Kai Wright
In NY State Blacks Rank Highest Among HIV-Positive Inmates

Part V: Black Women and HIV by Sharon Lerner
Rising Infection Rate Reflects an Age-Old Gender Imbalance

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