Since it appeared in the early 1980s, the acquired immune deficiency syndrome (AIDS) and the human immunodeficiency virus (HIV) that causes it have wrought physical and social devastation around the world. The number of people afflicted by the illness has increased markedly, and the range of communities affected has expanded. In the United States, while AIDS was first considered a "gay" disease because of the predominance of cases among men who had sex with men, the reach of the epidemic now has expanded to intravenous drug users and their sexual partners, heterosexual partners of non-drug-using HIV-infected persons, infants born to mothers infected with HIV, and hemophiliacs and others exposed to blood products or blood transfusion.
The number of AIDS cases reported in the United States has grown rapidly, surpassing 100,000 in 1988, 200,000 in 1990, and 300,000 in 1992. The rate of increase is alarming: the first 100,000 reported cases occurred in an eight-year period, while the second 100,000 cases occurred in only a two-year period. The demographic makeup of the epidemic has seen rapid changes as well. Although men continue to constitute over 85 percent of the adults diagnosed with AIDS, the proportion of women is increasing: from 9 percent among the first 100,000 cases to 15 percent among the third. The proportion of cases among African Americans and Hispanic/Latino Americans has also increased, from 42 percent in
1988 to 48 percent in 1990 (CDC, 1992a). By the end of 1992, AIDS had become the leading cause of death for men aged 25–44 years and the fourth leading cause of death for women in the same age group. By the end of 1993, over 200,000 people in the United States had died of complications related to AIDS (CDC, 1994).
Reported AIDS cases tell only a piece of the story: the prevalence and incidence of HIV infection—the precursor to AIDS—is even more telling. However, truly accurate data are unavailable because not everyone is tested for HIV and not all results from those who are tested are reported. Available data show that the epidemic initially spread rapidly among fairly large, tightly knit, geographically concentrated networks of gay men and injection drug users, but now is expanding outward. Aside from hemophiliacs, the highest seroprevalence rates documented have been among drug users in the New York metropolitan area. As early as 1984, studies reported a rate of infection as high as 50 percent among this group (Marmor et al., 1987). However, alarming HIV seroprevalence rates also have recently been observed among other groups, including female Job Corps students, young gay men, alcoholics in treatment, and psychiatric patients.
Despite extensive efforts to develop effective treatments as well as a vaccine for HIV/AIDS, a fully effective treatment, cure, vaccine or other medical intervention appears to be years away. In conjunction with such developments, efforts to prevent the transmission of HIV through the cessation of behaviors that contribute to it must be expanded. This requires a commitment to understanding and intervening in human behavior.
Much of the AIDS research supported by the institutes under review here (NIAAA, NIDA, and NIMH), is dedicated to developing and implementing (and to a lesser extent, evaluating) HIV prevention interventions within various populations. These interventions should be driven by basic behavioral and social science research on the determinants of behavior and behavior change, and to a great extent they are. Yet much of this basic research is still in its early stages, its development inhibited by a political climate during the first decade of the epidemic that made it difficult, at times impossible, to conduct research on the very behaviors in question: drug use and sex. For example, although numerous scientific and policy reports called for a federally sponsored national survey of sexual behavior to help determine the nature and level of risk for HIV transmission in the general population, federal and congressional restrictions have not allowed it.
The absence of information about the specific sexual behaviors in which people are engaging has hampered AIDS prevention efforts. Now, although the current climate is more supportive of such research, basic behavioral and social science research is having to catch up. Moreover, much-needed efforts to integrate this research with basic biomedical research to obtain a more complete understanding of the complex factors that contribute to the transmission, disease progression, and prevention of HIV/AIDS among different people are still just beginning.
An overview of the extent of knowledge about the range and contexts of sexual and substance-using behaviors by which HIV is transmitted is presented in Chapter 2. Although attempts to conduct large-scale projects on the specific behaviors involved has been hampered, significant contributions to the knowledge base have come from individual studies using the methods of qualitative, social science research and behavioral epidemiology.
As the state of knowledge about the psychological and social determinants of HIV-related behavior improves, it will become increasingly important to investigate how these determinants interact with neurobiological factors to influence the specific behaviors of individuals in social contexts. Even though basic neurobiological, psychological, and social data about the determinants of risk behavior remain to be gathered, behavioral and social science-based AIDS prevention interventions have been developed and employed by NIAAA-, NIDA-, and NIMH-supported researchers, and they are yielding some important findings. Chief among these is the fact that behavior can be changed, even among people perceived as being especially hard to reach, such as injection drug users and homeless and runaway youths. At least, research has found that behavior can be changed for the short term; more research is necessary to determine if behavior change can be maintained over time. Additionally, assessing the relationship between behavior change and actual avoidance of HIV infection is an important component of AIDS prevention research that has been relatively underexplored to date. These issues are the focus of Chapter 3.
While preventing the initial transmission of HIV is the top priority from a public health perspective, it is equally important to develop effective treatment interventions for people who are already infected. This requires knowledge about disease progression and how it might differ among individuals and populations. Although major advances have been made in understanding the basic biological mechanisms of the virus in the body, the issue of
how the virus relates to the brain and to behavior is just beginning to be explored. Recent and current research suggests a bidirectional relationship: that is, the virus may affect the brain (e.g., infected cells produce neuropathology, such as dementia) and the brain may in turn effect the virus (e.g., psychosocial coping strategies boost immune system functioning). Unlocking some of the remaining mysteries about the complicated relationship between HIV, the brain, and behavior requires cross-disciplinary research, research at the intersection of biology and behavior. Ultimately, this should lead to the development of appropriate interventions, pharmacological, psychosocial, and social-structural. These issues are addressed in Chapter 4.
After highlighting some of the significant developments and outstanding gaps in AIDS-related behavior, mental health, and substance abuse research, the report moves in Part II to a discussion of the context in which this research has been supported. Chapter 5 describes the general context within which the NIAAA, NIDA, and NIMH AIDS programs have been operating. The most salient elements of that context are: (1) the recent reorganization of the Alcohol, Drug Abuse, and Mental Health Administration (ADAMHA); (2) the new budget and program authority of the Office of AIDS Research (OAR) at NIH; (3) the budget process; and (4) the grant review process. A discussion of these elements makes evident the level of complexity and uncertainty at the institutes while they were part of ADAMHA and as they were being transferred to NIH.
The committee was asked to assess the balance between biomedical and behavioral AIDS research in the portfolios of NIAAA, NIDA, and NIMH (notwithstanding this fluctuating context). The committee began by examining the programs and priorities for AIDS research as articulated in various planning and reporting documents produced by the institutes. In addition, the committee engaged in a grant-by-grant analysis of the three institutes' AIDS programs. Together, these efforts yielded some interesting findings. In particular, the committee determined that the very act of counterpoising these two categories of "biomedical" and "behavioral" research—while common in health science policy discussions—not only is inadequate for describing the nature of research supported by the institutes, but also undermines the possibilities of advancing the very sort of cross-disciplinary research needed to address the AIDS epidemic. In order to address the spirit of the question, but to more adequately describe the institute programs, the committee developed its own simple scheme
for categorizing research approaches, which is presented in Chapter 6 .
In the course of its analysis, the committee discovered that cross-disciplinary research that traverses the biomedical-behavioral boundaries to examine the relationships among the brain, behavior, and HIV is underway at NIAAA, NIDA, and NIMH. However, although increased attention is being paid to links between the biological and the psychological aspects of HIV/AIDS on the individual level, very little research has been conducted on the social factors and context in which individuals contract, transmit, and experience the disease. Chapter 6 elucidates this analysis of the balance among research perspectives in the three institutes' portfolios. The management of the AIDS programs of the institutes is also discussed, with respect to specific budgets for AIDS and non-AIDS research and the organizational structure of each institute's AIDS program.
Finally, in Chapter 7, the relationship between the AIDS research programs of NIAAA, NIDA, and NIMH and the services programs formerly at ADAMHA and now at SAMHSA (as well as relevant programs elsewhere in PHS) is discussed. With respect to AIDS prevention and intervention, it is very important to disseminate research findings to the field as quickly and as effectively as possible. At the same time, service providers often are in a unique position to discover new, researchable questions. How these two worlds of researchers and service providers interact—including how the federal agencies responsible for research and service programs coordinate their activities—is of great concern to all those involved.
This report presents both an overview of salient research on mental health, substance abuse, and other behavioral factors associated with AIDS, and an analysis of the context in which that research has taken place. It aims to provide a critical assessment—and an appreciation—of the efforts of the federal research enterprise to respond to and anticipate new directions in an epidemic that has burst quickly upon the scene and has already wreaked havoc on individuals, families, and communities around the world.