PART I
Understanding the Epidemic
We are now in the second decade of the HIV/AIDS epidemic. The first decade was marked by a mixed record in the areas of prevention, care, and treatment. Throughout the world the disease continues to spread. In the United States the number of new infections per year is estimated at 40,000 to 70,000—an extremely high number, yet a number that is down by more than half from ten years ago. Some European nations have reported even more dramatic successes. In contrast, the data from many developing countries are grim.
Workshop participants felt that it is time to reanalyze our understanding of this epidemic because basic perceptions of the problem lead directly to our choice of courses for controlling it. In particular, this is a global epidemic, affecting more than 150 countries. It is also an epidemic that has borne the burden of social censure, which has inhibited prevention and treatment activities in many places. Finally, it is an infectious disease spread through sexual intercourse and needle use—behaviors that complicate the more simplistic vector/host concepts that are common in infectious disease fields. Clearly, a stigmatized, global pandemic caused by a behaviorally transmitted infection demands the involvement of social and behavioral scientists in order to develop adequate models for prevention and treatment.
An abundance of epidemiological data are available from routine surveillance surveys conducted by the state health departments and the Centers for Disease Control and Prevention (CDC). These data provide estimates regarding prevalence and incidence of HIV infections in the country as a
whole and in individual states and cities. Current methods of reporting emphasize the magnitude of the epidemic over time but pay less attention to the epidemic's spatial and social dimensions. In order to understand the dynamics of the process of infection, we need information that allows us to follow the infection not only by the numbers of people involved but also by its spread from place to place; this spatial analysis is the work that is undertaken by medical geographers and social ecologists (Gould and Wallace, 1994). Without spatial and social data, researchers are at a disadvantage in efforts to explain the obvious nonrandom distribution of the epidemic and to answer such questions as these: Why are there outbreaks in some communities and not others, even when the populations are demographically and behaviorally similar? How has the epidemic traveled from one place to another? How is it organized within those places? And how can high-risk locales and social groups be better identified? These questions call for a more detailed examination of the context of the HIV epidemic.
To date, the mapping of the epidemic has been treated as a rather straightforward endeavor, even though accumulating data argue that the spatial and social distribution of HIV disease incidence and prevalence is affected, often in fundamental ways, by selective migration of persons at risk of contracting and/or spreading the infection. There is much to be learned about the social demography and epidemiology of HIV infection, both here and abroad. What has been missing is a detailed examination of the history, geography, anthropology, economics, psychology, and sociology of the epidemic as it affects local communities throughout the United States and the world. The social science research effort that could provide this information lags far behind the biomedical and epidemiological study of the epidemic. Yet seemingly disparate scientific views can be complementary, and each is needed to ensure an accurate understanding of this complex phenomenon.
Workshop participants felt that there is now an opportunity and strong need for the social sciences to augment the existing body of surveillance data by showing the dynamism of the spread of the epidemic, by estimating the magnitude of uncounted infections, and by helping to forecast where the disease will spread next. The social sciences are also needed to augment the transfer of basic biomedical advances into effective prevention and treatment strategies.
HIV is spread by individual behaviors, but the structure of behavioral partnerships that contribute to that spread include dyads (relationships involving two individuals), networks, and communities, and these partnerships are further influenced by a multiplicity of social forces that are historical, cultural, political, and economic in nature. Preventive interventions to reduce the spread of HIV can be targeted toward the individual to reduce high-risk behaviors, but prevention need not be limited to such an approach. Social-
science-based interventions can be targeted toward sexual partnerships, networks, communities, and broader social policies.
The scientific community is well aware that HIV/AIDS is not just an American issue, encapsulated within geographical borders. AIDS is a global problem, affecting both low-income and high-income societies. A solution in one place may have relevance for another, but this will not necessarily happen. The application of all effective solutions should be considered for new locales, but multiple factors require examination to predict success. Part IV of this summary will provide illustrations of this contention.
Box 1 presents a partial listing of the social and behavioral disciplines and methods relevant to the study of HIV prevention. Anthropological, sociological, geographic, and demographic methods, although quite varied, often complement and enhance one another in the study of larger community and population entities like neighborhoods, metropolitan areas, regions, and societies. More extensive use of these methods would greatly expand our
understanding of the underlying social and cultural dynamics of the epidemic in particular settings. Such understanding is critical to devising more effective ways of intervening to curtail the epidemic in its manifold expressions in this country and abroad. The rich array of methods includes participant observation, interviews, life histories and narratives, systematic population-based surveys, demographic and social histories of communities, demographic models of age and gender, the mapping of kin and other social networks, and the eliciting of local knowledge and taxonomies on certain topics. It also involves the study of language, which people use to convey identity and worldview and attempt to influence others. Through language, individuals are themselves influenced to behave in particular ways. Read together, one approach informs the others. Ethnographic observational studies, for example, can provide a check on the reliability of other kinds of data, such as self-reports. (As an example, see the case study on commercial sex workers in Thailand described in Part II of this report.)
Psychological, social psychological, microsociological, and microeconomic approaches are useful for focusing on the more microlevel analysis of individual behavior, partnerships, and small group interaction. They provide methods for studying social exchanges among persons and among groups; the unequal distribution of social resources; negotiation and bargaining processes, and strategic action; choice, and decision processes. All of them afford insights into key aspects of sexual and/or drug transactions that are often pursued by persons who differ greatly in their goals, relative resources, and power to affect the content and character of the exchange. All of these variables have important implications for the distribution of the behaviors that put people at risk for infection.
