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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences 1 Introduction PURPOSE OF THE REPORT The human immunodeficiency virus (HIV) causes significant morbidity and ultimately death by destroying the immune system. The rapid spread of HIV has become one of the major health challenges of our time. The situation is particularly bleak in parts of sub-Saharan Africa, despite the fact that HIV-prevention programs have been initiated in every country in the region (Mann et al., 1992). The number of people infected with the virus, and with its attendant constellation of morbidity known as acquired immune deficiency syndrome (AIDS), continues to rise. Prevention efforts to date have included attempting to ensure a safe blood supply, launching massive public awareness campaigns about HIV and AIDS in an attempt to induce widespread behavior change, and instituting extensive marketing and distribution of condoms. There is encouraging evidence that behavior-change interventions can be effective. Public awareness of the AIDS epidemic is extremely high throughout Africa, and condom sales have risen dramatically across the continent in the past few years. Other promising findings include a recent reduction in the prevalence of HIV-1 infection among young males in rural Uganda and evidence that treating sexually transmitted diseases (STDs) in rural Tanzania may reduce the spread of HIV (Mulder et al., 1995; Grosskurth et al., 1995). But many interventions have been experimental and small scale and so are not sufficient to reverse the course of the epidemic (Lamptey et al., 1993). At the same time, discovery of an effective vaccine or treatment is hindered by a variety of scientific, economic, ethical, and logistical obstacles, and neither is likely to be developed soon (International
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences Ad Hoc Scientific Committee on HIV Vaccines, 1994a, 1994b; Cohen, 1993, 1994a, 1994b). As discussed further below, even if a vaccine or cure were developed, it would probably not be sufficient to bring a speedy end to the epidemic because of imperfect effectiveness, cost, and less than universal distribution and acceptance. In addition, many of the millions of people already infected with HIV are unaware of their status and so represent a pool capable of passing the virus to new cohorts. Therefore, with or without a vaccine, behavior change is necessary. The purpose of this report is to consider the needs for research and data in the social and behavioral sciences that could help improve and extend existing successful programs and devise more effective strategies for preventing HIV transmission. We do so while recognizing that were such strategies to stop transmission tomorrow, a formidable burden of disease would remain because of the number of current infections. Thus the report also focuses on research and data that could support efforts to mitigate the impact of the AIDS epidemic. BACKGROUND Extent of the Epidemic With little fanfare, the official number of AIDS cases worldwide since the start of the epidemic passed the 1 million mark near the end of 1994. By December 31, governments had notified the World Health Organization's (WHO) Geneva headquarters of 1,025,073 cases of the disease since the start of record keeping in 1980—a fact that was covered in a six-sentence story on an inside page of The New York Times (January 4, 1995). Moreover, given the chronic underreporting and under-diagnosis in developing countries, the actual number of AIDS cases may be four times as high (World Health Organization, 1995). The official statistics include people who have died, but they do not reflect the millions of people who are already infected with HIV but have yet to develop the symptoms of AIDS. The situation is critical in sub-Saharan Africa, where WHO estimates that approximately 11 million adults and as many as 1 million children have been infected with HIV and where basic infrastructure, financial, and managerial resources, as well as health-care personnel to deal with the catastrophe, are all extremely scarce (World Health Organization, 1994, 1995). The magnitude of the epidemic varies widely across the continent. All of the most seriously afflicted countries are geographically concentrated in sub-Saharan Africa. With the exception of Côte d'Ivoire in West Africa, they all lie in a region of East and Southern Africa that stretches from Uganda and Kenya southward to include Rwanda, Burundi, Tanzania, Malawi, Zambia, Zimbabwe, and Botswana (U.S. Bureau of the Census, 1994; Stanecki and Way, 1994). In certain cities such as Kampala, Uganda; Lusaka, Zambia; Blantyre, Malawi; and Francistown,
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences Botswana, as many as 1 in 3 sexually active women is infected. In others, such as Niamey, Niger, and Bamako, Mali, fewer than 1 in 100 sexually active women may be affected (see Chapter 3). HIV infection and AIDS have been documented as the leading cause of adult death in Abidjan, Côte d'Ivoire; Kinshasa, Zaire; rural southwest Uganda; and various urban and rural parts of Tanzania (De Cock et al., 1990; Nelson et al., 1991; Kitange et al., 1994; Sewankambo et al., 1994; Mulder et al., 1994a, 1994b). A substantial proportion of many African governments' health budgets is now spent on the treatment and care of those with AIDS, and there are reports that half of some hospitals' medical-ward beds are occupied by AIDS patients (e.g., Hassig et al., 1990, for Mamo Yemo Hospital, Kinshasa, Zaire; Tembo et al., 1994, for Rubaga Hospital, Kampala, Uganda). More detailed HIV/AIDS statistics are presented in Chapter 3. Patients seeking treatment today probably contracted the virus years ago. Thus no matter how serious the situation currently appears, it is only the tip of the iceberg. For those countries most severely affected by the epidemic, projections of the number of AIDS deaths in sub-Saharan Africa indicate that there will be very large increases in years to come. In many African countries, demographers expect adult and child mortality to increase enormously as a result of the epidemic. By the year 2010, if present trends in the growth of the epidemic continue, life expectancy is expected to fall from 66 to 33 years in Zambia, from 70 to 40 years in Zimbabwe, from 68 to 40 years in Kenya, and from 59 to 31 years in Uganda (Way and Stanecki, 1994; see also Chapter 6). Need for Immediate Action Perhaps the most important argument for immediate action to slow the further spread of HIV is that in many parts of the region, the epidemic has not yet peaked: not only is it bad, but it is getting worse. HIV tends to spread quickly among individuals at high risk of infection, such as commercial sex workers and their clients; it spreads thereafter—at first slowly and then at an accelerated pace—into the general population. In many sub-Saharan African countries the disease has already spread widely, but in others it has not. Because the cost-effectiveness of prevention efforts declines rapidly as the epidemic spreads, the timing of interventions is crucial. Failure to control the epidemic now will mean that far more costly and difficult interventions will be necessary in the future (Potts et al., 1991; World Bank, 1993). Prevention is considerably more cost-effective than ''treatment" in the future, because "treatment" is limited solely to caring for the sick, burying the dead, and mitigating the economic impact of sickness and premature death. Lessons learned in those countries where the epidemic occurred early may help slow the further spread of HIV there and perhaps have an even greater impact in areas where HIV is not yet widespread. A second reason for acting now to revitalize programs to combat HIV and AIDS is that African governments are facing a critical turning point in prevention
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences efforts. Since their inception in the late 1980s, national prevention programs have operated on the assumption that traditional health education about HIV/AIDS would be sufficient to induce widespread behavior change. The most optimistic reading of the results of these prevention efforts is that they have been less successful than was at first hoped. While targeted behavioral interventions are undoubtedly an essential part of prevention, it proved overly optimistic to believe that the first prevention messages—some of which were hastily developed and quite generic—would induce widespread changes in sexual behavior. Prevention efforts clearly need to take into account both deeply rooted social mores and rapidly changing economic forces that are related in complex ways to the spread of the disease (Lurie et al., 1995a, 1995b; Feachem et al., 1995). Moreover, the level of initial response to the disease by the international community has not been sufficient to alter significantly the course of the epidemic. Additional strategies and resources are required if the spread of HIV is to be controlled. In this connection, it may be noted that, as suggested above and confirmed by surveillance data collected to date, the HIV/AIDS epidemic has spread unevenly through sub-Saharan Africa. In fact, there is no single AIDS epidemic in Africa; rather, there are many different, interwoven epidemics (Piot et al., 1990). Initial reports of AIDS emerged in the early 1980s from Zaire and from areas surrounding Lake Victoria, particularly on the Uganda-Tanzania border. From there the epidemic quickly spread to neighboring countries as local cultural, social, economic, and biomedical conditions favored its rapid spread. Subsequently, the disease spread into the Southern African countries of Zambia and Zimbabwe and more recently into Botswana, Namibia, and parts of South Africa (U.S. Bureau of the Census, 1994; Stanecki and Way, 1994). Significantly, the epidemic has not moved westward nearly as rapidly (Caldwell, 1995). In West Africa, high levels of prevalence have been reported in Abidjan, Côte d'Ivoire, and adjacent areas of Ghana and Burkina Faso (Caldwell and Caldwell, 1993). In Nigeria the first AIDS case was detected in Lagos in 1987, but HIV sero-prevalence levels among Lagos sex workers are still under 15 percent, even though Lagos is the largest cosmopolitan city in Africa, is a major crossroads for commerce within the region, and has a highly active commercial sex industry (Caldwell, 1995). A recent study indicates that the prevalence of HIV-1 and HIV-2 among prostitutes in Lagos State may be rising rapidly (Dada et al., 1993), but a simple diffusion model clearly cannot explain adequately the set of events described above. Much more needs to be known about the role of various social, behavioral, cultural, economic, and biomedical factors that influence the nature and limits of the epidemic, and thus contribute to its differential spread. Third, leadership of the global effort to fight AIDS is changing hands, creating an important opportunity to review what has been achieved to date and to develop a coherent global strategy for the foreseeable future. At the beginning of the epidemic, WHO assumed responsibility for the vast majority of activities
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences related to AIDS prevention and control in Africa. In 1985, it established a Special Programme on AIDS, later renamed the Global Programme on AIDS (WHO/GPA), and began to work with ministries of health in African countries to develop their short-and medium-term plans to fight the epidemic. Furthermore, WHO/GPA offered extensive technical assistance to newly created national AIDS control programs in Africa. It provided as many as four resident expatriate advisers to some programs, all of whom were directly involved in the day-to-day implementation of HIV/AIDS-prevention efforts. Now, five additional United Nations organizations—the United Nations Children's Fund (UNICEF), the United Nations Development Program (UNDP), the United Nations Population Fund (UNFPA), the United Nations Educational, Scientific and Cultural Organization (UNESCO), and the World Bank—have made firm commitments to AIDS activities. As a result, the executive board of WHO recently recommended the creation of a joint United Nations Programme on AIDS (UNAIDS) to improve coordination among the various organizations and to boost the global response. Fourth, for a number of reasons, current AIDS-prevention efforts may be reaching a plateau. Some donor agencies and governments in developed countries are beginning to suffer from "donor fatigue," induced partly by the realization that the epidemic is unlikely to affect the developed world as badly as was first feared, and partly by an inability to see how the money and effort expended on prevention thus far have affected the course of the epidemic. Many international donors do not want to commit themselves to providing care for the growing number of AIDS patients in countries where expenditures on health averaged less than US $15 per capita in 1990. The most visible consequence of donor fatigue in Africa is the withdrawal of resident WHO/GPA advisers from national AIDS control programs. Because of financial constraints, WHO/GPA has been unable to sustain its initial level of support, and has been forced to reduce the number of personnel in virtually every country (see also Chapter 7). This reduction in assistance has had enormous costs, in both human and economic terms. It also increases the urgency for action by Africans and their governments. All national AIDS control programs are struggling to recover from the major withdrawal of WHO/GPA technical advisers and the concomitant reduction in funds and guidance, which have left an enormous gap in their ability to implement successful prevention programs. Instead of building on ten years of prevention experience, many programs are being forced to undergo a second infancy, and are repeating mistakes and relearning lessons (see Appendix A). A fifth reason underscoring the need for immediate action is that AIDS is believed to be an especially costly disease, although the point has proved difficult to document. The economic consequences of AIDS stem from the direct and indirect costs to individuals, aggregated to the macro level. The direct cost of the disease is defined as the lifetime cost per patient for medical care. Estimates of this cost in Africa vary widely, from US $64 to $11,800 (see Chapter 6). The
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences indirect cost reflects the cost to families and to society of lost potential years of productive life. AIDS tends to kill people in what should be their most productive years, and people with AIDS are often heads of households who leave behind multiple dependents. The results from one small study in Uganda, for example, suggest that the death of a household head as a result of AIDS can lead to reduced production of food crops, gradual depletion of household assets, withdrawal of children from school, and higher levels of household malnutrition (Barnett and Blaikie, 1992; see also Chapter 6). Furthermore, the disease does not affect the population uniformly. Studies in Rwanda, Uganda, Zaire, and Zambia during the late 1980s and early 1990s indicate that AIDS strikes disproportionately the wealthier, better-educated, and more skilled members of society (Ainsworth and Over, 1994a, 1994b). Consequently, the indirect cost of AIDS, which includes foregone earnings, is relatively higher among this subset of the total population. However, the absolute number of HIV cases is higher among lower socioeconomic groups. Thus there is still a great deal of uncertainty over the net impact of the epidemic on gross domestic product per capita because AIDS affects both the numerator (production) and the denominator (the size of the population).1 Finally, the indirect cost of AIDS must include the social cost of coping with the approximately 10 million AIDS orphans expected by the year 2000. One way to quantify the impact of AIDS in Africa is to calculate the number of "discounted healthy life years" that would be gained by averting a single new case of HIV. The benefits of averting a case—19.5 discounted healthy life years—are very high relative to other diseases; by this measure, HIV ranks lower than neonatal tetanus, but higher than other widespread illnesses such as malaria, tuberculosis, and measles. However, if one were to weigh the benefits of averting a case of HIV by an estimate of the productivity lost, HIV would rank highest among all diseases (Over and Piot, 1993). The Need for Better Behavioral and Social Science Research Because AIDS is an epidemic so firmly rooted in human behavior, driven by economic, cultural, and social conditions (see Chapter 2), the behavioral and social sciences have much to offer toward identifying solutions for its control. Yet to date, the vast majority of funding for HIV/AIDS research has been spent on biomedical research in an attempt to understand the nature of the virus as a logical starting point for identifying a vaccine or a cure. And the contribution of 1 It is unclear which elements of the population will be hardest hit as the epidemic matures (see Chapter 6). For example, more highly educated African men may be first to lower their risk of infection by having fewer casual sex partners or by using condoms more often than less-educated men. In a study of HIV-1 infection in adults in rural Uganda, Nunn et al. (1994) found no statistically significant differences in HIV infection by level of occupation.
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences behavioral and social science research to understanding the impact of the epidemic in Africa has been minimal (Caldwell et al., 1993). All too often it has been implicitly assumed that behavioral and social science research should take place only because there are currently no effective vaccines or treatments for the disease, as if the discovery of a vaccine or a cure would eliminate any further need for such research (Coates, 1993). As noted earlier, the assumption that availability of treatment solves all problems is simply not true. For example, the resurgence of tuberculosis has become one of the world's most serious health problems, even though a cure that is 95 percent effective has been available for almost 50 years. Moreover, historical evidence shows that mortality from tuberculosis fell sharply in England and Wales starting in the 1840s, so that a large part of the decline occurred before the introduction of an effective treatment 100 years later in 1947 (McKeown, 1979). To take another example, although treatments for other STDs, such as gonorrhea and syphilis, have existed for over 40 years, those diseases have not been eradicated, even in the United States (Turner et al., 1989), and remain a major cause of adult morbidity in Africa (Coates, 1993; Stanecki et al., 1995). Furthermore, as noted above, even as the medical community searches for a technical solution, there is a growing realization that a vaccine or an effective treatment for HIV/AIDS will not be developed in the near future. In any event, for a vaccine or treatment to be useful in Africa, it would have to be inexpensive, easily administered, and effective against various strains of the virus (Lamptey et al., 1993). It is unlikely that the vaccines under current development would offer 100 percent protection (Coates, 1993). Millions of Africans are already infected, and it appears certain that millions more will become infected before an effective vaccine or treatment is available. Fortunately, all African countries have implemented various forms of prevention and education campaigns to combat the spread of HIV. However, there is considerable variation in the design and execution of these programs. Good evaluations are scarce, but there are some early signs that certain prevention strategies have achieved limited success (see Chapter 5). For those programs that appear effective on a limited scale, the big questions are whether they are sustainable and whether they can be replicated successfully. In summary, changing human behavior to slow the speed or limit the extent of transmission will always remain the first and probably the most important line of defense against HIV/AIDS. Effective prevention of the disease requires enormous and continued commitment in order to achieve lasting changes in human behavior. No one set of interventions—behavioral or medical—will be sufficient by itself to combat the HIV/AIDS epidemic. More and better behavioral, social, and medical research is needed to develop more effective and acceptable preventive strategies and to help find more effective ways of mitigating the negative impacts of the epidemic. Future efforts would benefit from a critical conceptual review of what has worked so far and why.
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences THE PANEL'S TASK With the above considerations in mind, the National Research Council assembled a special panel of international experts in 1994, at the request of the U.S. Agency for International Development, to examine the nature of the HIV/AIDS epidemic in Africa from a social and behavioral viewpoint. The goal of the Panel on Data and Research Priorities for Arresting AIDS in Sub-Saharan Africa was to identify and describe the numerous behavioral and social factors that affect the spread of the HIV/AIDS epidemic in Africa, to identify or clarify strategic opportunities for donors and African governments to develop effective interventions both for preventing the spread of the epidemic and for mitigating its impacts, and to elucidate the most pressing research requirements over the next 5 to 7 years for facilitating the development of more effective prevention and control strategies in the future. At the outset, the panel realized that this mandate was nearly impossible: the strategies and issues surrounding the HIV/AIDS epidemic are extremely complex and change constantly as the epidemic evolves. No single report could be expected to address the full range of potential issues. Therefore the panel decided to focus its efforts on identifying data and research priorities. Even so, the task is daunting. Sub-Saharan Africa is a geographically, demographically, socially, and culturally heterogeneous region (see Chapter 2). Thus, as suggested above, we do not find homogeneity in the distribution of HIV and AIDS or in the behavioral factors and social contexts that are so vital in shaping the nature and the spread of the epidemic. There are enormous differences within the among countries with regard to the rate of spread, the socioeconomic groups most severely affected, the cultural contexts of practices that place populations at risk, and the male-to-female ratio of new infections. There are also important differences among communities with regard to the level of AIDS awareness and the degree of stigmatization associated with the disease (Kaijage, 1994a, 1994b). Finally, AIDS is contracted from two different viruses—HIV-1 and HIV-2. Although the two have the same modes of transmission, HIV-2 is concentrated in West Africa, is less dangerous, and is far less common and less well understood than HIV-1 (see Chapter 3). Hence, the only way to respond effectively to the epidemic is to plan at the national, or preferably the subnational or regional, level. A further complication facing the panel from the outset was that if AIDS research is to be successful, it must be perceived as useful and relevant by the community under study. To make the panel's efforts as participatory as possible, several members visited selected sub-Saharan African countries during the course of the panel's work and talked with many African policy makers, researchers, and planners. In addition, in January and February 1995, a subcommittee of the panel spent 3 weeks in Cameroon, Tanzania, and Zambia talking with senior African officials to solicit their views on the extent of the AIDS crisis in their countries and the appropriateness of the existing level of response (see Appendix A).
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences Given time and resource constraints, it was impractical to visit and talk with more than a small percentage of the large number of people working in this field. However, we attempted to survey the views of a cross-section of interested parties and tried to represent their views faithfully and accurately. This report is the product of the panel's deliberations. We have focused on identifying research priorities that would be most useful to fund and coordinate centrally and that would have the greatest general applicability, as opposed to being useful only in a particular setting or environment. We hope this report will serve as a useful starting point for future participatory discussions among researchers from both developed and developing countries. ORGANIZATION OF THE REPORT This report offers recommendations in five critical areas: monitoring of the overall status and context of the HIV/AIDS epidemic in Africa, gathering of information on sexual behaviors associated with the spread of the epidemic, primary HIV-prevention strategies, strategies for mitigating the impact of the epidemic, and the need for building an indigenous capacity for AIDS-related research in Africa. Given the vast heterogeneity of the region with respect to, inter alia, the nature and severity of the epidemic and the cultural, social, economic, and political climate within which prevention and mitigation efforts are working, the relative weight given to these five areas must be judged on a country-by-country basis. Likewise, the relative priorities for recommendations offered within chapters will vary by country. Nevertheless, the panel has identified five key recommendations for immediate action. In general, the report starts by presenting information on the societal context and basic epidemiology of the epidemic and moves to identifying strategies for preventing the further spread of the epidemic or mitigating its effects. Chapters 3 through 6 each end with a set of recommendations for future research. Chapter 7 ends with a set of recommendations for building capacity to accomplish this research. Our five key recommendations are numbered separately from our other recommendations, which are numbered by chapter in the order in which they appear. True understanding of the HIV/AIDS epidemic in Africa cannot be achieved without an appreciation of the multiple social, behavioral, economic, and cultural obstacles to HIV/AIDS prevention in the region. The societal context within which people are born and raised, are initiated to sexuality, and lead their lives strongly influences their perceptions of risk and their sexual behavior. Social, cultural, and economic factors can act either to speed or to retard the spread of infection. Effective interventions must target not only individual perceptions and behavior, but also their larger context. Chapter 2 introduces and discusses some of the more salient features of the societal context that affect the size and shape of the epidemic.
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences Chapter 3 provides a comprehensive overview of what is currently known about the epidemiology of the HIV/AIDS epidemic in sub-Saharan Africa. It provides up-to-date data on the state of the epidemic and reviews what is known about the major modes of HIV transmission, including sexual, perinatal, and parenteral. A growing body of data suggests that HIV cannot be considered in isolation from other STDs because it shares with them modes of transmission and behavioral risk factors. More important, there is evidence that other STDs may increase susceptibility to and transmission of HIV, so that STD treatment and prevention may serve as an important weapon in curbing the HIV/AIDS epidemic. Heterosexual transmission is responsible for at least 80 percent of HIV infections in sub-Saharan Africa. Information is needed on sexual behaviors, particularly numbers of partners, sexual networks and their determinants, types of safe and nonpenetrative sex, condom use, and care-seeking behavior for symptoms of STDs in order to understand barriers to the effective and rapid adoption of preventive measures; to develop more effective approaches to AIDS and STD prevention; and to provide baseline data in order to evaluate the success of an intervention. Chapter 4 focuses on social and cultural practices that may promote or inhibit the sexual spread of HIV and summarizes what we know about sexual practices and beliefs, levels of sexual activity, condom use, and levels of AIDS awareness. Chapter 5 examines what we know about designing effective prevention programs. There are many challenges to designing effective interventions targeted to African men, women, and youth. The chapter highlights some of the strategies that have been implemented and uses case studies to illustrate both targeted strategies and comprehensive programs. Basic principles of successful intervention programs include adapting the program to local conditions, carefully targeting the audience, building local capacity, ensuring community participation, evaluating results, and using the results from evaluation studies to improve the program. Successful intervention programs should also be multidisciplinary and multifaceted and involve multiple contacts with targeted populations. As Chapter 5 explains, however, it is not easy to demonstrate the success of a particular intervention because it is difficult to define and measure outcome variables such as "better health status" and to determine whether the intervention in question was the reason for a desired change. Consequently, the need for solid evaluation research is still urgent. There is also an urgent need to design better ways to target adolescents and women for prevention messages. Evidence from a variety of sources around Africa suggests that seroprevalence either is continuing to climb or has leveled off at discouragingly high levels. Even if the transmission of HIV were halted today, the millions of young adults and infant Africans currently infected with HIV would develop AIDS and die over the next 10 to 20 years. Increasingly, governments are obliged to spend money on mitigation assistance. Policy analysis of this problem is badly needed,
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences both to improve the efficiency of current expenditures and to determine whether additional spending is needed. Chapter 6 reviews the evidence on the current and the inescapable future impacts of AIDS in Africa, including the social, psychological, demographic, and economic impacts on both individuals and societies. A great deal of attention has been devoted to attempting to limit the further spread of HIV. Considerably less thought has focused on identifying solutions to the problem of coping with the millions of people in sub-Saharan Africa already infected with the virus. It is obvious that the impact on infected individuals is devastating; in addition to the physical suffering and grief caused by the disease, AIDS can lead to social and economic hardship, isolation, stigmatization, and discrimination. Relatively little research has been conducted on the economic consequences of adult morbidity and mortality, which are far less obvious. As noted above, throughout the report the panel has identified research and data priorities intended to improve our understanding of the social and behavioral factors influencing the spread of HIV/AIDS in Africa. The hope is that this understanding can in turn be used to inform the development of prevention strategies for arresting the spread of HIV/AIDS and mitigation strategies for lessening the impact of the epidemic. Undertaking effective research, however, requires that an appropriate infrastructure be in place, a prerequisite that is often lacking in Africa. As a result, virtually all research on AIDS in Africa undertaken to date has been made possible only through technical cooperation and assistance from the international community. Beyond the immediate challenge of the panel's mandate—identifying the critical research priorities—there remain enormous practical challenges surrounding the implementation of those priorities. The final chapter examines the enormous constraints to conducting research in sub-Saharan Africa and proposes means of alleviating some of these problems, including establishing a sub-Saharan Africa AIDS research institute with a strong behavioral and social science component. At the moment there is no cure for AIDS, but prevention works, and behavioral and social science research has a critical role to play in designing more effective prevention programs. Yet access to results from studies that have been conducted throughout the region remains fragmentary; many studies have not been committed to paper, while others have not been disseminated widely, even within the country where the research was undertaken. This gap obviously hinders effective design, direction, and evaluation of programs and leads to duplication of effort. There is an urgent need to evaluate many of the strategies that have been implemented so far to determine whether they have been effective or cost-efficient and whether they warrant replication or expansion. At the same time, we note that AIDS is an extremely rapidly moving field in terms of both research and prevention. Until new research is available, it is very important to keep trying the existing strategies, as well as designing new and innovative ones. Some interventions that did not work well one year might work well the next because the severity of
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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences the epidemic is forcing people to rethink their values and behavior and is changing the social context. Strategies and policies should be responsive to the ever-changing situation, as well as receptive to the findings of research being carried out throughout the region. An effective partnership between research and program interventions will be key to lessening the spread and impact of the HIV/AIDS epidemic in sub-Saharan Africa.
Representative terms from entire chapter: