HIV. AIDS. These acronyms have become part of the language in the past 15 years, words in their own right. Like IRS.

But the IRS only takes your money. AIDS--acquired immune deficiency syndrome, which leaves the body defenseless against a wide range opportunistic infections--plays for higher stakes, to the tune of some 400,000 Americans’ lives so far.
 
Florida has consistently accounted for about 10 percent of U.S. AIDS cases, and about 30 percent of Florida’s victims live in Dade County. In other words, Dade has been home to about three percent of Americans with AIDS, and in fact metropolitan Miami has the third highest AIDS case rate among major U.S. cities, second only to San Francisco and New York.

Thanks to the development of new and more effective drug treatments, Florida has--like the nation--seen a recent decline in the number of new AIDS cases and the number of HIV-related deaths. In 1996, the number of AIDS cases reported in the state dropped nearly nine percent.

But in Dade County, the decline was only 7.4 percent. The decline in AIDS deaths from 1995 to 1996 was even more dramatic, but once again Dade County lagged behind the state as a whole: 25.3 percent as opposed to 29.0 percent.

The same statistics raised another alarm for Dade because they showed that the burden of the epidemic was shifting more and more toward minorities, women, and heterosexuals. Thus, what was once known as “gay men’s disease” has become another in the long list of plagues that reserve special fury for what researchers guardedly call the “underclass”: the economically and socially disadvantaged, the uneducated, the homeless, and the drug-addicted, people whose life goals are tracked more often in days than in decades and whose knowledge about--and access to--health care is usually limited.

The demographics of Dade County (where “minorities” are in fact in the majority) and of the AIDS epidemic as it has unfolded there have always differed sharply from those of Florida as a whole and the United States. For example, blacks account for 46.8 percent of the cumulative cases reported in Dade County through 1996, as opposed to 42.0 percent statewide. The proportional representation of Hispanics is twice that in the state or nation: 33.3 percent in Dade County, as opposed to 15.3 percent in Florida and 17.6 percent in the United States.

The burden of the epidemic has been shifting toward women for a decade--but again, more decisively in Dade County than in Florida or the nation. In Dade, 20.8 percent of cumulative adult-adolescent AIDS cases reported through 1996 were among females, as opposed to 19.7 percent in the state and 14.9 percent in the nation.

AIDS is the leading cause of death of minority women (and men) age 25-44 years in Dade County, as it is in the rest of Florida. Among childbearing women, the median HIV infection rate is more than 10 times higher among minorities as it is among whites, based on an eight-year, statewide survey conducted by the Florida Department of Health.

Preaching the Gospel of Prevention

The nation’s public health response to the AIDS epidemic has tried to keep pace with the agile human immunodeficiency virus. Early on we learned that it’s not who you are that puts you at risk of HIV infection but what you do (or, perhaps, who you do it with).

But absent a vaccine that will prevent infection or a magic bullet that will cure people after they become infected, health professionals have been forced to try to find ways to convince people not to engage in activities that place them at increased risk of becoming infected in the first place. It’s no coincidence that the federal agency charged with tracking and controlling diseases changed its name in 1993 from Centers for Disease Control (the CDC) to Centers for Disease Control and Prevention (still known as the CDC).

To be sure, the early years of the epidemic (mid- and late eighties and early nineties) saw a number of prevention efforts by the CDC, state and local health departments, and non-governmental organizations. Some of these reminded one of parental finger-shaking: If you climb up the slide, you might fall and hurt yourself! If you have sex (or at least, unprotected sex), you might get AIDS and die!

Other prevention messages were more carefully tailored for specific audiences, such as men who have sex with men, and there is good evidence that these messages were effective in reducing the spread of disease in this population. (Unfortunately, more recent evidence indicates that the effects wear off after awhile, and that we may have to start over with a whole new generation of gay men, who have not seen their lovers and friends waste away and die.) Prevention messages directed to other audiences or to more general audiences were thought to be effective, but no one was able to say exactly how effective.

As the burden of the epidemic has shifted away from gay men, three truths have emerged with increasing clarity. First, the overlapping categories of people increasingly affected by the epidemic (women, racial-ethnic minorities and injection drug users and their sex and needle-sharing partners) are those that are least likely to be moved to behavior change by messages from the Establishment, which many of them have learned to view with suspicion.

Second, because this delicate little virus called HIV lives only in body fluids such as blood, semen, and vaginal secretions, it usually is transmitted at very intense, emotional moments, when one’s brain almost invariably yields control to other organs. Third, any request for money to fund new interventions would have to be accompanied by hard evidence that they can reduce the transmission of disease.

The new challenge, then, is to study scientifically the intimate behaviors that take place in bedrooms and shooting galleries and bath houses and to use this new, quantifiable knowledge to design interventions that would be appropriate to--and demonstrably effective in--these settings. The new approach belongs to the categories of behavioral research and behavioral medicine, and Dade County provides a ready-made laboratory for the study of one of the most HIV-vulnerable population groups: minority women. It is here, many believe, that we will find the tools we need to break the chain of infection.

At Work in a South Florida Lab

A team of FSU researchers has been hard at work in this lab since 1992.

That year, they launched a $1 million study funded by the National Institute of Child Health and Human Development and focused on the women of Miami. The first phase of the study is now complete, and a $2 million grant approved this year will expand the work and track progress through the next four years.

Dr. Dianne H. Montgomery, professor and dean of the School of Social Work, heads a team that includes Dr. Isaac W. Eberstein, professor and chair of the Department of Sociology; FSU biologist Dr. David Quadagno; and Dr. David Sly, a faculty associate with the university’s Center for Population Studies.

In their study, the FSU group built on earlier work that indicated that the use of alcohol and drugs before or during sexual activities was associated with an increase in behaviors that put people at risk for HIV. Other researchers had established a correlation--but not a causal relationship--between substance use and risky behaviors by questioning subjects about their use of drugs and alcohol and their unsafe sexual practices or by asking them to describe a specific sexual encounter (usually the most recent one) and to report what substances were used and what risky behaviors occurred.

The FSU team was determined to take the latter method, called “event analysis,” a step further.

They had to begin, of course, by finding a field coordinator, which they did in the person of a bilingual former FSU graduate student who was from Miami. Montgomery and Sly then made many trips to Dade County (“not to places that were among the Top 10 tourist sites,” she says) and interviewed more than 200 people to be interviewers and intervention leaders. She hired people who, she says, “could really relate to the subjects of the study” and who, presumably, would not feel constrained in discussing intimate behaviors (many of the disease intervention specialists, clinicians and physicians in Dade County are of Hispanic or Haitian descent and are thus susceptible to cultural taboos against talking openly about sex).

The interviewers then recruited a sample of high-risk women 18 to 45 years old from detention centers, drug treatment centers, sexually transmitted disease and other public health clinics, and public assistance offices in Dade (Miami) and Broward (Ft. Lauderdale) counties. The women had to meet at least one of several inclusion criteria (e.g. that they had had unprotected sex at least once in the last six months, had multiple partners, or that they had self-injected drugs in the last six months); other criteria (e.g. pregnancy or HIV infection) led to exclusion.

Those who were eligible and agreed to be subjects were divided into three groups, one for African American women, one for Hispanics, and one for white non-Hispanics. Individuals were then randomly assigned to ethnically similar experimental or control groups. Participants attended six two-hour weekly sessions, each led by a trained peer from the same racial-ethnic group. By 1996, a total of 557 women had participated in the study.

The expanded event analysis occurred at the start of each session, when the women were asked to complete a weekly diary of sexual activities, recording what substances were used before and during each sexual event, what risky behaviors took place, and whether a condom was used. The training in the first three sessions concentrated on the basics of HIV, assessment of risk, and reasons for changing behaviors so as to avoid risk. The last three sessions were devoted to the development of assertiveness and negotiation skills -- through role-playing, the women practiced what they would do in real-life situations of sexual and drug risk.

The women were re-interviewed three, six, and nine months after the training to determine how effective the lessons were. For each experimental group, there was a control group that received no training, only information about existing community resources.

The FSU researchers hypothesized that the women in the experimental groups might turn out to be different from their control peers in six ways: their knowledge about HIV transmission, condoms and their correct use, and contraceptive methods and their effectiveness in preventing the transmission of HIV; comfort in discussing condom use with their main sexual partner; frequency of condom use during vaginal intercourse; and assertiveness.

Some of these values are clearly more difficult to measure than others; to gauge assertiveness, for example, the interviewers were trained to evaluate both verbal and non-verbal aspects of the women’s responses when they were read four vignettes. Here’s one of them:

Several other studies were generated using the same data. A surprising find: a woman’s ethnicity did not, in and of itself, have a significant influence on who makes decisions on the type, timing, and frequency of sex. (The FSU researchers expressed surprise at the high percentage of Hispanic women--members of a traditionally machismo culture--who reported mutual decision-making on sex.)

Another study documented that women who use alcohol and drugs are more likely to engage in risky sexual behaviors and less likely to use a condom than those who are not “substance users.” A third explored the degrees of risk that result from various combinations of certain “proximate risk behaviors” (self-injection of drugs, sex with three or more partners, sex for money or drugs, and sex with a bisexual partner or user of injected drugs) and four “compounding risk behaviors” (use of marijuana, cocaine, some other drug, or alcohol); racial-ethnic factors came into play here, too.

Under their new grant, the FSU researchers will continue their work in Dade County but will shift their focus from minority women to minority couples. The primary objective of the new study will still be to reduce risks for women, but a second goal will be to reduce the risks that males bring to (and are exposed to during) sexual encounters.

If a woman qualifies and agrees to be included in the new study, she will be asked to recruit her main sex partner; if he does not agree, the woman will be excluded. Interviewers in this project will collect a broader range of demographic and health information from both participants and non-participants. A pilot project that will run before the main study will test the feasibility of recruiting these couples by approaching and screening men rather than women.

From Research to Practice

How do the prevention techniques tried and found true by the FSU research team find their way into practice?

First of all, of course, through the very agencies with which the team has worked in Dade and Broward counties. Montgomery says the FSU team plans to maintain contact with those agencies, some of which already have asked for their help. This alone would seem to be sufficient justification for their work, since Dade County alone accounts for about 3 percent of the nation’s AIDS morbidity.

But as Montgomery says, “It will be difficult to take findings from this diverse population and generalize them to other parts of the country.”

Quadagno agrees. “What we find out about Hispanic women, for example, may not apply elsewhere. New York City’s large Hispanic population, for example, is primarily of Puerto Rican, rather than Cuban, descent,” he said.

Eberstein puts it succinctly: “Application is a challenge, and we have ideas on how to do this but not a plan as such.”

In fact, the broader significance of the FSU researchers’ work may lie in their determination--and ability--to apply accepted standards of the social sciences to formative behavioral research carried out in the crucible of an epidemic that is still largely unchecked, still evolving, and as politically charged as ever.

“That this aspect of prevention activities is finally being recognized at the federal and state levels is very gratifying and makes this work even more useful,” Montgomery says.

Sly puts it in a historical context.

“People who write the history of the sciences in 10 or 20 years will see this as the Golden Age of the social sciences,” he says. “The exciting thing is that this will be seen as the period in which people were willing, for the first time, to spend the money to support this sort of work.”

Drugs must go through a series of trials mandated by the Food and Drug Administration before they are approved, Sly says, “and we’re using the same basic type of trials in another area. . . . We have been funded at a level that gives us an opportunity to use a real scientific model.”

Expanding on the comparison, Sly says: “Drug companies are good at marketing, but we (in the social sciences) are not. But we’re learning.”

Montgomery believes that the interdisciplinary makeup of the FSU team “has added tremendously to its value--it strengthens both our proposals and our work.”

In fact, Sly adds, “one of the really exciting things about what we’re doing now is how ‘portable’ it is in an interdisciplinary sense. We’re learning that projects like these have implications for a whole range of health concerns, because other health problems are susceptible to the same kind of approach.” He cites, as an example, breast cancer, “where behavioral research might be quite productive.”

The nature and results of the FSU team’s work on HIV intervention is already being telegraphed to the scientific world through the established medium of refereed scientific journals. The interventions devised by the FSU researchers and tested in the laboratory of South Florida will thus be available for adoption or adaptation by the world at large.

The recognition that results will be rewarding in a professional sense, but Montgomery also finds rewards at a more immediate, basic level.