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Recruiting Foot Soldiers in HIV Siege
By Rick Weiss NEW YORK — Omosupe Jackson strides out of the dingy New York City Department of Health clinic in the South Bronx wearing a red felt hat, big gold earings and black crushed velvet pants. She is 28, black, single, out of work, and the mother of a 5-year-old boy. She is also a key player in this country's effort to develop an AIDS vaccine. Jackson is a volunteer for the clinic with an unusual mission: to hang out with women in this struggling neighborhood that has always been her home and draw them into the health care system and the AIDS vaccine research effort. "I am walking the streets, but in a good way," she says, with cool assuredness. "Wherever women are, that's where I am." Jackson finds women at bars and on street corners, in markets buying diapers or food, and in shelters seeking refuge from abusive boyfriends. She gives them pamphlets about AIDS and other sexually transmitted diseases. She gives them condoms, sometimes demonstrating their use on bananas. She invites them to the clinic, where they can be counseled and tested for HIV, the virus that causes AIDS. And in the process of gaining their trust, Jackson starts to talk to the women about upcoming tests of experimental AIDS vaccines that may someday protect them and others against the deadly virus that is decimating their community. Working without fanfare over the past several years, Jackson and scores of other community workers in eight U.S. cities have enrolled thousands of men and women — all of them HIV-negative but deemed at high risk of acquiring the virus — into a pool of volunteers who may be willing to get injected with an experimental AIDS vaccine as soon as one looks promising enough to justify a large-scale trial. The workers are part of HIVNET, a government-funded system of street-wise recruitment and professional counseling that has been painstakingly constructed and honed to near perfection over the last five years. Created long before any candidate AIDS vaccine was promising enough to stir even a flicker of excitement, HIVNET has quietly laid the crucial groundwork that will be needed to prove that an AIDS vaccine works. "Putting together a large, ethically designed efficacy trial is not something you can just do in a day," said Michael Mitchell, 31, who with Jackson co-chairs HIVNET's community advisory board and has been recruiting male vaccine volunteers in Manhattan's gay community much as Jackson has been doing with women in the Bronx. "We are the people out in the community with our finger on the pulse," Mitchell said. "And most important, we are here to advocate for the patients' rights." That's important because AIDS vaccine tests carry not only the usual medical risks associated with any new vaccine but also special psychological and sociological risks — including the troubling consequence that volunteers will probably test positive on AIDS antibody tests for the rest of their lives, with all the problems that can bring. It's also important because people at greatest risk of contracting AIDS — whose participation is crucial to proving that a vaccine works — are largely poor minorities, intravenous drug users and other disenfranchised people not especially trusting of the medical establishment. Some even suspect that the AIDS epidemic was created or fostered by the United States government as a racist or homophobic plot. This summer, the first 200 or so of the more than 6,000 high-risk volunteers recruited through HIVNET were called into service to participate in an intermediate test of an AIDS vaccine made from a canarypox virus. If that vaccine passes muster, then the rest of the "HIVNET 6,000" would be asked to take a historic step forward and roll up their sleeves for the first full-scale efficacy trial of an AIDS vaccine. It would be up to HIVNET workers to make sure volunteers understand what they are getting into. Perhaps most important, volunteers must not be left with the impression that the vaccine will protect them against HIV or make them noninfectious to others, according to HIVNET national chairwoman Cladd Stevens, chief of the laboratory of epidemiology at the New York Blood Center. Even the best vaccines probably will never be that perfect, Stevens said, and earlier versions may be hardly protective at all. Moreover, volunteers who are unknowingly assigned to the control group will be given placebo vaccines, leaving them completely unprotected. "You may give it to people and they may say, 'Hey, I'm protected,' and then maybe they double their risk behaviors," Stevens said. "So what have you accomplished?" Warnings like those are conveyed to volunteers during counseling sessions before they are allowed to sign up. At the same time, counselors take the opportunity to teach volunteers how to reduce their risk of becoming infected with HIV. Sometimes it seems as though organizers are working against themselves, Stevens said. After all, the only way to prove that an AIDS vaccine worked is to show that more people given a dummy vaccine became infected over a period of time compared with those given the real vaccine. For that difference to appear, a reasonable number of new infections must occur in the group getting the dummy vaccine. But if HIVNET performs its educational mission well, there will be few new infections in either group, and it may be hard to tell whether the vaccine worked. This is why an AIDS vaccine efficacy trial must be so large, Stevens said. If thousands of people are in the study, then at least a few hundred will take chances occasionally — by not using condoms, for example, or by sharing needles — and some of these will end up infected, providing the unfortunate but absolutely crucial new infections needed to a judge a vaccine's efficacy. "People have said to us, 'Maybe you shouldn't do counseling at all. You're going to ruin your study,'‚" Stevens said. "It is a methodological dilemma," but there is no ethical alternative to providing the best counseling techniques known, she said. Stevens, co-worker Beryl Koblin and others, have conducted research for years to determine the best counseling techniques to get people to reduce risky behaviors. They have also conducted large studies to see how many people can be expected to become infected with HIV despite regular counseling. That information will be crucial as organizers decide how many volunteers must be enrolled in a vaccine trial to assure enough new infections to make the trial informative.
© 1997 The Washington Post Company
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