Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences

The official number of acquired immune deficiency syndrome (AIDS) cases worldwide since the start of the epidemic passed the 1 million mark near the end of 1994—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. The official statistics also do not reflect the millions of people who are infected with the human immunodeficiency virus (HIV) but have yet to develop symptoms of AIDS. The situation is critical in sub-Saharan Africa, where the World Health Organization (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.

Sub-Saharan Africa is geographically, demographically, socially, and culturally heterogeneous, and the extent and spread of HIV infection and AIDS have accordingly been heterogeneous as well. Thus, it is difficult to generalize about the AIDS epidemic in the region. There have been only a few nationally or regionally representative seroprevalence studies conducted to date in sub-Saharan Africa, and information is available predominantly on the groups with the highest risk of HIV infection. Yet some overall characteristics and trends can be seen. The most afflicted countries are geographically concentrated: other than Côte d'Ivoire in West Africa, they 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.

Patients seeking treatment today probably contracted the virus years ago. Thus, no matter how serious the situation currently appears, there will be very large increases in the number of AIDS deaths in sub-Saharan Africa in the future. By the year 2010, demographers project that life expectancy will 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.

NEED FOR IMMEDIATE ACTION

There is encouraging evidence that intervention programs to change behavior can be effective in preventing the spread of HIV. 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. But many interventions have been experimental and small scale and so are not sufficient to reverse the course of the epidemic. At the same time, discovery of an effective vaccine or treatment shows little promise. Furthermore, 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. Thus, changing human behavior to slow the speed or limit the extent of transmission will remain for the foreseeable future the first and probably the most important line of defense against HIV/AIDS in sub-Saharan Africa. More and better social and behavioral research is needed to develop more effective and acceptable preventive strategies and to find more effective ways of mitigating the negative effects of the epidemic.

Perhaps the most important argument for immediate action to slow the further spread of HIV is that, as suggested above, in many parts of the region the epidemic has not yet peaked. HIV tends to spread quickly among individuals whose behaviors place them 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.

Another important reason for acting now to revitalize programs to combat HIV and AIDS is that the region's governments are facing a critical turning point in prevention efforts. Since their inception in the late 1980s, national prevention programs often have operated on the assumption that traditional health education about HIV/AIDS would be sufficient to induce widespread behavior change. This has not proved to be the case. The most optimistic reading of the results of these prevention efforts is that they have been less successful than was at first hoped. At the same time, 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. In response to a recommendation by the executive board of WHO, and with firm commitments to AIDS activities from other United Nations organizations, a joint United Nations Programme on AIDS (UNAIDS) is being created to improve coordination among the various organizations and to boost the global response.

Finally, for a number of reasons, current AIDS-prevention efforts may be reaching a plateau. 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. Furthermore, 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 advisers of WHO's Global Programme on AIDS from national AIDS control programs. 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.

We recommend research and data in the social and behavioral sciences to improve and extend existing successful programs and devise more effective strategies for preventing HIV transmission, as well as support efforts to mitigate the impact of the AIDS epidemic. Our recommendations cover five areas: the monitoring of the epidemic, information on sexual behavior and HIV/AIDS, primary HIV-prevention strategies, mitigation of the impacts of the epidemic, and the building of an indigenous capacity for AIDS-related research. Both our five key recommendations and our other recommendations are offered with full acknowledgment of the importance of the economic, political, and societal context of the HIV/AIDS epidemic in Africa. Our five key recommendations are numbered separately from our other recommendations, which are numbered by chapter in the order in which they appear.

SOCIETAL CONTEXT OF HIV/AIDS IN AFRICA

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. Planners and policy makers must be cognizant of the societal context and attempt to modify it in ways that are conducive to and supportive of change. Effective interventions must target not only individual perceptions and behavior, but also their larger context.

Among the salient factors that affect the size and shape of the HIV/AIDS epidemic in sub-Saharan Africa are the age and gender composition of the population; the pattern of sex roles and expectations within society; inequities in gender roles and power; sexual access to young girls and the acceptance of widespread differentials in the ages of sexual partners; rapid urbanization under conditions of high unemployment; poverty; considerable transactional sex fostered by limited earning opportunities for women; and lack of access to health care, particularly treatment for various STDs. These factors are often exacerbated by social upheavals related to economic distress, political conflicts, and wars. Of course, there is enormous variation in the situation from country to country; particularly noteworthy are the differences between West Africa and East and Southern Africa.

EPIDEMIOLOGY OF THE HIV/AIDS EPIDEMIC

The global HIV/AIDS epidemic consists of many separate, individual epidemics, each with its own distinct characteristics that depend on geography, the specific population affected, the frequencies of risk behaviors and practices, and the timing of the introduction of the virus. No single factor, biological or behavioral, determines the epidemiologic pattern of HIV infection. Instead, a complex interaction among several variables determines how and where HIV spreads in a population. The primary mode of HIV transmission is sexual, with heterosexual transmission accounting for at least 80 percent of adult HIV infections in sub-Saharan Africa.

Biological factors also influence the spread of the epidemic by increasing or decreasing susceptibility to the virus, altering the infectiousness of those with HIV, and hastening the progression of infection to disease and death. Such biological factors include the presence of classical STDs, male circumcision, and the viral characteristics of both HIV-1 and HIV-2 and their multiple genetic strains.

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 treatment and prevention of STDs may serve as an important weapon in curbing the HIV/AIDS epidemic.

Although HIV infection rates are high among many populations and subgroups in sub-Saharan Africa, there is much variation in incidence and prevalence, both geographically and by population subgroups. The probable causes of this heterogeneity in seroprevalence include behavioral, biological, and societal factors. As suggested above, trying to explain the phenomenon by a single factor—such as civil war, male circumcision, STDs, or rate of partner change—is simplistic. Instead, it appears that the simultaneous occurrence of several risk factors for HIV transmission determines how rapidly and to what level HIV spreads among a population and who becomes infected. This epidemiologic diversity not only reflects differences in sexual and other behaviors, but also suggests that the epidemic has not reached an equilibrium in most areas.

The HIV epidemic and the demographic structure of the population of sub-Saharan Africa will have complex interactions over time. The population is predominantly young, in sharp contrast with the age structure in developed countries, and many of the behavioral factors associated with HIV transmission are common among young people. Accordingly, the large number of people under age 15, who will soon enter their sexual and reproductive lives, represent a priority group for AIDS and STD prevention.

KEY RECOMMENDATION 1. Basic surveillance systems for monitoring the prevalence and incidence of STDs and HIV must be strengthened and expanded.

Good social science research is as dependent as public health and medical research on reliable and valid HIV/AIDS surveillance data. With the implementation of various interventions aimed at controlling HIV transmission, periodic monitoring of STD and HIV prevalence and incidence among selected populations is essential both for assessment of the impact of these programs and for decision making on program design and implementation.

Recommendation 3-1. More emphasis must be placed on HIV incidence studies for monitoring trends in HIV infection rates.

Although seroprevalence provides important information regarding currently infected individuals in an area, measuring incidence is also critically important for estimating the rate of change in the spread of HIV infection in a given population. In particular, data on current incidence provide the most direct and immediate information regarding the potential effects of a given intervention. Together, prevalence and incidence studies can provide information regarding the current status of the epidemic in terms of numbers of infected individuals and the rate of spread within a given population on an annual basis.

Recommendation 3-2. STD and HIV prevalence and incidence data should be combined with behavioral and demographic information.

Current surveillance systems are often limited, incomplete, and inconsistent, and they rarely measure behavioral or demographic variables. Given new, non-invasive techniques for the collection and analysis of biological specimens (including blood, urine, vaginal secretions, and saliva), accurate assessment of STD and HIV prevalence and incidence can readily be combined with behavioral and demographic information.

In conjunction with periodic serosurveys, demographic information is needed to elucidate the differential spread of STD and HIV infection in rural and urban settings and variations in seroprevalence and incidence by gender, educational level, profession, income level, age, and other demographic factors. This type of information is critical for targeting prevention messages to selected groups at risk of acquiring and transmitting HIV and for projecting the effects of HIV and other STDs on a population over time.

SEXUAL BEHAVIOR AND HIV/AIDS

Patterns of sexual behavior—both partner selection and particular practices are —clearly the primary determinant of the spread of the HIV/AIDS epidemic in sub- Saharan Africa. Information on sexual behavior is needed to help project the future course of the epidemic, to develop more effective prevention strategies, and to provide baseline data for evaluating the effectiveness of alternative preventive strategies.

Several studies have begun to address how sexual networks channel and potentially amplify HIV transmission in sub-Saharan Africa. Such networking studies encompass the role of migration, transportation systems, and local markets. Asymmetric age matching, where young women have sexual contact with older men, results in a young cohort of women who have been exposed to older male partners with higher HIV prevalence; this pattern creates a chain of infection that passes from generation to generation.

Heterogeneity in the composition of sexual networks may have strong implications for the speed or direction of viral transmission. Patterns of mixing between people in high- risk core groups and others in the general population observed in sub-Saharan African settings (in contrast to pairings confined within well-defined core groups) can result in substantial spread of STDs and HIV among the general population. Although much emphasis has been placed on "high-risk" behaviors associated with multiple, sequential, short-term relationships, there is a growing body of research suggesting that concurrent multiple partnerships, including those that are stable and long term (common in many African settings), may contribute substantially to HIV transmission.

At the same time, however, networks also serve as bases of social support and the development of behavioral norms. Networks are a potential natural resource for behavioral interventions. Support for behavioral change, such as acceptance of condoms among peers, can enable individuals to negotiate these matters more effectively when confronted with a resistant partner. Conversely, the absence of support networks can make behavioral change more difficult to achieve.

Recommendation 4-1. Research on sexual networks is critical.

Population-based research is needed to collect and analyze data on both the variables that describe individual sexual behavior and the possible socioeconomic determinants of the decision to have sex with a new partner or forgo protection. Since the details of interconnected sexual networks are difficult to deduce from the answers to individual questionnaires, there is also an important role for social network research.

♥

♥

Recommendation 4-2. Researchers need to develop more reliable ways of collecting information on sexual behavior and to find ways of testing its validity.

There appears to be a much greater willingness to report sexual behavior than was believed until recently, but this field of research requires sensitivity. The challenge is to develop definitions and appropriate vocabulary, such as for categories of relationships, that are both specific enough to be clear to respondents and generalizable enough to be useful to analysts and program planners. The challenge is likely to grow as information about high- risk behavior spreads, increasing the likelihood that respondents will seek to give the "right" answers on questionnaires and in interviews. Hybrid research strategies involving both qualitative and quantitative approaches are essential. Where appropriate, and when both privacy and confidentiality can be ensured, biological markers of sexual activity (such as HIV or STD status) should periodically be incorporated into behavioral surveys to allow assessment of the validity of questionnaire responses and the extent to which the latter provide adequate information on risk.

Recommendation 4-3. Research is needed on patterns of sexual initiation and on the formation of sexual norms and attitudes.

The sexual habits of a lifetime may well be influenced by a socialization process that starts at or before puberty, often before sexual activity begins. A better understanding of the early influences on sexual norms and attitudes and of patterns of sexual initiation may prove essential to promoting safer behavior. For this recommended research to be successful, studies must include children and prepubescent youths, as well as sexually active adolescents and their partners. Recognition that sexuality is socially constructed and changing rapidly is essential to broadening the research agenda and improving interventions.

Recommendation 4-4. More work is needed to clarify the frequency of specific sexual practices.

Because the epidemic in sub-Saharan Africa is being sustained by heterosexual transmission, information on sexual behavior is needed to help develop more effective prevention strategies, as well as to provide baseline data to evaluate their effectiveness. Specific sexual practices—dry sex, oral sex, and anal sex being but a few examples—may impede the success of particular interventions, yet information about such practices is necessary for encouraging behavioral change.

Recommendation 4-5. Research on coercive sex, especially among adolescents, is critical.

The magnitude of the problem of coercive sex is all but unknown, as are the circumstances under which forced sex or rape takes place. How frequently does it happen and why? Do the aggressors or the victims share characteristics that might suggest a path for preventive or protective interventions? Research on community attitudes, mores, and gender expectations that may serve to encourage or inhibit coercive sex is urgently needed in order to determine how to enlist community support for the curtailment of such practices.

Recommendation 4-6. Research aimed at achieving a better understanding of perceptions about the dual roles of condoms is required.

Condoms help prevent the spread of HIV/AIDS; they also prevent pregnancy. How aware are people of these dual roles, and what weight do they give each when deciding whether to use condoms? How often are these roles in concord and how often in conflict? Do partners discuss this issue, and if so, what are the negotiating mechanisms used?

Recommendation 4-7. Research on attitudes and beliefs about and behavioral responses to sexually transmitted diseases is required.

To develop effective strategies for the treatment of STDs, understanding is needed about social and cultural responses to STDs, including stigmatization. Much more knowledge about the health-seeking behaviors of people infected with STDs, and whether their sexual habits are altered by knowledge of infection, is also needed.

Recommendation 4-8. Research on acceptance of and behavioral responses to HIV vaccination is urgently needed.

Because vaccine trials are likely to begin with vaccines of limited efficacy, there is an urgent need to learn whether individuals who are vaccinated increase their exposure to HIV through riskier behavior, and if so, to determine how to mitigate this response.

PRIMARY HIV-PREVENTION STRATEGIES

As suggested earlier, despite the many limitations inherent in attempting to evaluate the effectiveness of interventions aimed at HIV prevention, clear evidence is emerging that such efforts can be successful, particularly among higher-risk groups. At the same time, however, data from various surveillance systems indicate that current interventions are probably not yet having a significant impact on the epidemic at the subcontinent or even the country level. Despite the fact that levels of AIDS awareness are extremely high in sub- Saharan Africa, getting people to change their behavior is difficult. Denial, fear, external pressures, social and sexual norms, other priorities, or simple economics can keep people from adopting healthier life-styles.

Yet getting people to change their behavior is not impossible. Indeed, health educators in sub-Saharan Africa have had a fair amount of success in recent years. For example, broad-based education campaigns have persuaded large numbers of people to have their children immunized against various childhood diseases and have educated mothers to give their children oral rehydration formula during episodes of diarrhea. Of course, attempting to modify more personal behavior, such as sexual practices, is more challenging. Yet family planning programs have been successful even in some of the most disadvantaged countries of the world. Even the most cautious reviews of behavioral interventions aimed at slowing the spread of HIV conclude that although most have not been rigorously evaluated, some approaches do seem to work. At the same time, it is important to have realistic expectations about what can be achieved. Behavior change will never be 100 percent: some individuals will never choose to protect themselves, while others will lapse into old patterns of behavior after a short period of time.

To increase the likelihood of success, interventions need to be culturally appropriate and locally relevant, reflecting the social context within which they are embedded. They should be designed with a clear idea of the target population and the types of behaviors to be changed. In turn, recognized impediments in the social environment to behavior change probably need to be specifically addressed. Behavior-change interventions should include promotion of lower-risk behavior, assistance in development of risk-reduction skills, and promotion of changes in societal norms. It must be noted that in sub-Saharan Africa, there is an urgent need to design ways of targeting women and adolescents for prevention messages.

Basic principles of successful intervention programs include the following:

· learning about and adapting to local conditions,

· ensuring community participation,

· carefully targeting the audience,

· identifying effective strategies and messages,

· building local capacity,

· evaluating results, and

· using the results from evaluation studies for improvement.

Successful intervention programs should also be multidisciplinary and multifaceted and involve multiple contacts with targeted populations. In sub-Saharan Africa, as elsewhere, HIV-prevention messages have included promotion of partner reduction, postponement of sexual debut, alternatives to risky sex, mutually faithful monogamy, consistent and proper use of condoms, better recognition of STD symptoms, and more effective health-seeking behavior.

Numerous interventions are being implemented throughout Africa, but most are still information-based health education campaigns. Many of the messages communicated are generic or vague and do not address specific risk behaviors. Innovative approaches are typically small scale and lack rigorous evaluation. Furthermore, it is not easy to demonstrate the success of a particular intervention because it is difficult to define and measure such outcome variables 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.

KEY RECOMMENDATION 2. An increase in research funding for the development of social and behavioral interventions aimed at protecting women and adolescents, especially girls, from infection deserves highest priority.

An important step in arresting the spread of AIDS in sub-Saharan Africa is to recognize that, although African women have relatively high autonomy by the standards of developing countries, their low and separate status remains a major obstacle to HIV prevention. In many societies, the presence of unmarried, postpubertal girls is a new phenomenon. Guidelines for their sexual behavior and that of others toward them are not well established; their low social status makes them particularly vulnerable. Moreover, in many areas of sub-Saharan Africa, high HIV incidence has been detected among adolescents and young adults, especially girls. Research on which to base the design of culturally relevant programs targeted to adolescents and to adults who might be their sexual partners is an important priority.

KEY RECOMMENDATION 3. More evaluation research is needed to correlate process and outcome indicators—such as reported condom sales and behavior change—with reductions in HIV incidence or prevalence.

Rigorous designs, such as controlled intervention studies to assess the effectiveness of different prevention approaches, are needed. To date, few rigorous evaluations of intervention programs in sub-Saharan Africa have been conducted. Evaluations that have been reported often lack precision in their measurement of risk behaviors and are therefore not very informative. As a result, few strategies can demonstrate whether they are effective. Barriers to rigorous evaluation research include lack of human resources, expertise, financial resources, and equipment. Overcoming these barriers requires major changes in research infrastructure. Nevertheless, it is a priority to begin now a few large- scale behavioral interventions, including adequate baseline surveys, multiround surveys, and longitudinal studies with comparison cohorts, even if these interventions are relatively expensive. It is only with these types of studies that more definitive information on the effectiveness of various interventions, which is so desperately lacking for most studies in sub-Saharan Africa, can be obtained. The longer such studies are delayed, the longer will exist the uncertainty about which HIV-prevention strategies work best, for whom, and under what circumstances. In the interim, basic program evaluation and some formative and operational research can be completed, and such work should be required by donors as part of program implementation awards.

Recommendation 5-1. Interventions that promote gender equality deserve high priority as AIDS-prevention strategies in every country.

Women's primary source of risk is their society-wide subordination, not their lack of knowledge. Governments can effect change in many ways to empower women: reducing the financial necessity for multiple partnerships by changing laws to give women equal access to training and jobs, equal rights of inheritance and property ownership, equal access to education, and equal wage scales; enacting and enforcing laws against rape; building the capacity of women for collective action; and educating everyone about women's rights. Enhancing the status of women is a long-term strategy that would have many beneficial effects for development, in addition to the likely effect of reducing the transmission of HIV and other STDs.

Recommendation 5-2. In the short term, a female-controlled vaginal microbicide that would allow women to protect themselves without their partner's participation is an urgent research and development priority for international donors.

A microbicide is not a quick-fix substitute for the fundamental structural reforms necessary to achieve gender equality, but rather a temporary and partial response to this problem as it influences HIV transmission. Yet in the same way that the use of spermicides by women can reduce fertility, the use of a microbicide could, in and of itself, help arrest the spread of HIV.

Recommendation 5-3. Research is needed to address the HIV-prevention needs of several other populations with marked vulnerability, particularly the mobile and the disenfranchised.

There is a need to reach mobile individuals and groups with comprehensible and acceptable programs, particularly where linguistic and cultural barriers exist between migrants and the local population. Ways of effectively providing preventive services to the disenfranchised populations in the ever-growing urban slums and in refugee camps need to be developed; a major challenge to such programs is the lack of resources and social support for individuals in such settings.

Recommendation 5-4. Additional research should be conducted to determine the impact of specific STD interventions on the incidence of HIV infection within defined populations.

Research is needed to determine the extent to which STDs help cause HIV infection, to examine the importance of the behavioral synergy of STD and HIV transmission, and to design more effective intervention programs. There is a need for assessment of the relative efficacy and feasibility of various interventions for STD treatment and sexual behavior change in reducing HIV transmission. This research includes assessing the effects of programs that target individuals at high risk of acquiring and transmitting STDs, as well as the effects of community-based STD programs. The interventions themselves could comprise STD education, condom distribution, increased STD screening, and mass antibiotic therapy. Data on the effectiveness of these interventions, particularly those focused on decreasing STD prevalence, are essential for evaluating the impact of STD reduction on the spread of HIV. Behavioral research on ways of ensuring acceptance of various STD control strategies should be directly integrated into the epidemiological research.

Recommendation 5-5. Research is needed to assess the effectiveness and cost- effectiveness of the syndromic approach to STD diagnosis and treatment.

Clinical testing for STDs is expensive and not widely accessible. Therefore, research is needed on better ways to identify STDs more accurately through symptoms. In addition, new screening methods, including urine-based assays for chlamydia and gonorrhea and self-administered vaginal swabs for trichomonas culture and bacterial vaginosis gram stain, should be incorporated into research. Efforts are needed to make these techniques available and affordable in developing-country settings for surveillance, diagnosis, and validation.

Recommendation 5-6. For long-term program planning and resource allocation, cost-effectiveness studies should be incorporated in donor research work and the cost- effectiveness of HIV prevention compared with that of other health interventions.

Few intervention evaluations have adequately assessed effectiveness in terms of behavior change or seroincidence declines, much less cost-effectiveness. Results of evaluation studies currently in progress in several countries in sub-Saharan Africa are expected to provide data on the cost-effectiveness of various HIV-prevention strategies. However, determining the effectiveness of HIV-prevention strategies is methodologically complex and will take several more years to complete. In the meantime, since resources are insufficient and may well decline further, efficient resource utilization is paramount. Thus, basic analysis of overall program costs and specific intervention costs is critical. Simple cost analyses and cost-effectiveness estimates could provide data that would be helpful for public health decision making and program design.

Recommendation 5-7. Operations research should be a high priority.

The growth of the HIV/AIDS pandemic in the past 20 years in sub-Saharan Africa has led to the development of institutional and community-based responses and a corresponding need for operations research to improve the effectiveness, cost- effectiveness, and quality of these responses. Primary research needs include scaling up successful experimental interventions, improving the effectiveness and reducing the cost of existing programs, examining the cost-effectiveness of linking HIV prevention with HIV/AIDS care, and improving the sensitivity and specificity of criteria for targeting interventions.

Recommendation 5-8. Research should be undertaken to measure the impact of female-controlled barrier contraceptive use on HIV transmission.

Studies should be undertaken to determine the effectiveness against STDs and HIV of female-controlled barrier contraceptives such as female condoms and spermicides. This research should encompass field-based studies of the acceptability of these methods. Moreover, greater efforts need to be made to integrate appropriate HIV/AIDS-prevention messages and programs for STD diagnosis, referral, and treatment into family planning programs.

Recommendation 5-9. Behavioral research is needed to develop effective pregnancy-related HIV counseling programs.

Given the rapid spread of HIV among women in sub-Saharan Africa, perinatal transmission continues to have a major impact on infant and child morbidity and mortality among populations with a high HIV seroprevalence. Studies using modified treatment regimens with Zidovudine (AZT), hyperimmune gammaglobulin, vitamin A, vaginal washes, and other means of intervention should be undertaken to determine their overall effectiveness and cost-effectiveness in decreasing HIV perinatal transmission.

MITIGATING THE IMPACT OF THE EPIDEMIC

AIDS will have a large social, psychological, demographic, and economic impact on both individuals and societies. In addition to the physical suffering and grief caused by the disease, AIDS can lead to social and economic hardship, isolation, stigmatization, and discrimination.

As noted above, even if transmission of HIV were halted today, millions of Africans who are currently infected would still develop AIDS and die over the next 10 to 20 years. But transmission has not ceased. To the contrary, evidence from a variety of populations in Africa suggests that seroprevalence either is continuing to climb or has leveled off at discouragingly high levels. For at least the next several decades, the HIV/AIDS epidemic will continue to ravage African prime-age adults and their children with death rates as much as 10 times higher than they would otherwise have been.

Although not immediately visible, the cumulative mortality effects of this "slow plague" will be substantial. Increases in infant and child mortality will be accompanied by increases in adult mortality and reductions in life expectancy. Population growth will decline more rapidly than expected, and the populations in sub- Saharan Africa in the year 2000, particularly among the countries in the main AIDS belt, will be somewhat smaller than those projected in the absence of AIDS. In many of the worst-afflicted countries, deaths will more than double during the 1990s as compared with the number estimated without AIDS. These additional deaths will put increasing strains on already overburdened health-care systems and on individual households trying to manage with limited economic resources. Care and support for orphans will be a growing concern, and traditional inheritance and other legal rights will be challenged.

Relatively little research has been conducted on the economic consequences of adult morbidity and mortality. AIDS is one of several diseases with potentially great economic significance for developing countries. Diseases such as malaria and measles are far more prevalent in Africa, yet there are reasons to believe that the economic impact of AIDS will be greater. The long incubation period of HIV implies that the economic impact of existing levels of infection would be felt for 10 years or more even if all infection were to cease today. The benefits of averting a case of HIV are very high relative to other diseases.

Whether directed at individuals with AIDS and their households or at other levels of social organization, mitigation interventions divert scarce resources from other uses, including efforts to prevent transmission. Thus, the value to society of any mitigation intervention should be as least as great as the cost of the resources devoted to the effort. Research on this issue might improve the efficiency of current expenditures, as well as justify a case for or against additional spending.

KEY RECOMMENDATION 4. Research on mitigating the impact of the disease should focus on the needs of people with HIV/AIDS.

A great deal more is known about designing and implementing HIV-pre-vention programs than is known about providing care to the millions of people in sub-Saharan Africa already infected with the virus. Simple, cost-effective solutions to daily living problems faced by persons with AIDS, such as palliative care, part-time home care, and group counseling, may make larger, more expensive interventions unwarranted.

Recommendation 6-1. Research efforts to evaluate the impact of HIV/AIDS on individuals, households, firms, economic sectors, and nations are badly needed.

Research on impact should incorporate both qualitative and quantitative approaches to data collection and should evaluate both short- and long-term effects. Of particular interest is research that would permit an understanding of the impact of HIV/AIDS on poverty and on individual decision making. Research is needed to ascertain whether decreased life expectancy reduces willingness to save or invest in financial and real assets, in human capital, and in the relationships necessary to maintain social interactions. In the long term, the impact of HIV/AIDS on sub-Saharan Africa will depend on the strength and malleability of social and economic networks in accommodating the changes that are occurring.

Recommendation 6-2. Since the attempt to assist directly every affected household would be financially nonsustainable, research is needed on criteria for determining which households and communities should be targeted for assistance and which institutions should deliver that assistance.

The epidemic has already affected millions of households in sub-Saharan Africa and will continue to do so for at least the next 20 years. Efforts to mitigate the effects of the disease have been uncoordinated and poorly targeted, and their ability to provide solutions for those infected and their families remains to be proven.

Recommendation 6-3. Discovering the optimal roles of government, nongovernmental organizations, and donors in HIV/AIDS prevention and mitigation is critical and requires further study.

Governments are now moving to decentralize and privatize AIDS programs by contracting, licensing, or franchising activities to various types of nongovernmental institutions. Research is needed on the determinants of the effectiveness of nongovernmental organizations, including those not devoted primarily to AIDS prevention and mitigation, in a variety of AIDS prevention and mitigation activities. Care is needed in defining the technical assistance needs and the absorptive capacities of nongovernmental organizations, to enhance their roles in research and prevention and to avoid overload and inefficient use of scarce resources.

♥

♥

BUILDING CAPACITY FOR AIDS-RELATED RESEARCH

If useful research on HIV/AIDS is to be undertaken and its results are to be applied appropriately and effectively, the necessary infrastructure must be in place, a prerequisite that is often lacking in sub-Saharan Africa. As a result, virtually all research undertaken to date has been possible only with technical cooperation and foreign assistance from the international community. Thus, beyond the immediate challenge of identifying the critical research questions, there remain enormous practical challenges of actually obtaining the answers.

Key aspects of a basic infrastructure for conducting effective research include access to adequate funding, skilled labor, and appropriate technology, as well as sufficient managerial and administrative capacity to plan, execute, monitor, and evaluate studies. Even in developed countries, amassing the resources required to undertake complex research endeavors is difficult, and these difficulties are multiplied many-fold in sub- Saharan Africa. Many of the region's universities have been badly neglected in recent years. The poor preparedness of matriculating students, entirely inadequate salaries for all levels of professional and support staff, neglect of buildings and libraries, and a lack of core funds necessary to move institutions into the technological age have contributed to the universities' slow demise and the widespread departure of their faculties to the private sector.

Many of the findings from the research that has been conducted have not been adequately disseminated, so that results are not widely known across the continent. As a consequence, the contributions of social and behavioral scientists have not been fully utilized. In addition, inadequate coordination of research efforts has resulted in duplication and the need to "reinvent the wheel."

These structural problems are compounded by donor policies and practices that result in short-term studies that do not allow sufficient time for local capacity building, the predominance of expatriate personnel in most projects, and at least the perception among the recipients of donor assistance that projects address donor rather than local priorities. Yet the dominance of international donors in AIDS research in Africa is the result of a lack of domestic funding for such research in the region: many of the region's governments appear complacent about the magnitude of the epidemic and have so far contributed little to HIV/AIDS research.

In the long run, it is essential to help sub-Saharan African countries develop their own research capacity by strengthening their universities and augmenting the technical skills of their researchers. There is considerable debate and controversy, however, about how best to achieve this goal. Regardless of what the best mechanisms may be, no significant progress is likely to be made until the region's governments understand that they must put AIDS more squarely on their own research and policy agendas. Clearly, a major constraint on the amount of HIV/AIDS research that is undertaken is inadequate funding. Potential sources of funding include communities, private-sector firms, the public sector, and international donors. Because it is unlikely that donors are going to increase significantly their levels of funding in the near future, the governments will have to find additional resources. Given the weak economic position of most sub-Saharan African countries, however, it will be difficult to persuade their governments to pursue more vigorous research agendas in the near future.

KEY RECOMMENDATION 5. Linkages between sub-Saharan African institutions and international research centers must be established on a wide range of activities, including teaching, research, and faculty and student exchanges. International donors should seriously consider establishing a sub-Saharan African AIDS research institution with a strong behavioral and social science element.

There is a critical need to strengthen research institutions in sub-Saharan Africa. Linkages with international organizations, especially if built on an evolving and well- defined research agenda, can help local institutions develop and assist local researchers by providing relatively secure long-term funding, offering support for the preparation of data and manuscripts for publication and dissemination, and providing in-country technical assistance and research training. Experience in a number of settings has demonstrated that such long-term collaboration, in addition to contributing significantly to understanding of the HIV/AIDS epidemic, is mutually beneficial to all institutions involved; it could be very successful in providing highly skilled African researchers with support and the possibility of remaining in their country of origin.

Recommendation 7-1. The number of African scientists well trained to conduct research on HIV and AIDS must be increased.

Research capacity in sub-Saharan Africa cannot be improved without an increase in the number of well-trained local researchers. Four possible ways to introduce and keep more researchers in the field are to (1) integrate more graduate students and young professionals into all new AIDS-related research initiatives; (2) establish small grants programs to fund the projects of young researchers; (3) adjust pay scales to attract and retain talented professionals; and (4) provide other incentives for researchers to remain in their home institutions, including small-scale research grants, fewer teaching or administrative responsibilities, and more opportunities for international travel. Providing technical assistance to local researchers is an important priority. Local researchers could benefit from workshops that would help them design research projects, prepare research proposals, identify potential sources of funding, write reports describing interim results, and prepare final manuscripts for submission to peer-reviewed journals.

Recommendation 7-2. Each national AIDS control program should establish a local AIDS-information center that would develop and maintain a database of all AIDS- related research conducted in the country.

These centers should be linked via available technology, such as the Internet. They should also have AIDS databases on CD-ROM (CD-ROM-equipped computers are available in most national AIDS control program offices.) In addition, national and regional conferences should be held to provide forums at which researchers can discuss their research plans and present their results to a larger group of local researchers than those that attend international conferences.

Recommendation 7-3. There is an urgent need for sub-Saharan African countries to establish and periodically update research priorities at the regional and national levels, providing a basis for discussions with donors on AIDS-related research.

It is important to reduce the proportion of donor-driven research taking place in the region.

Recommendation 7-4. International organizations and donors should utilize existing local resources to the fullest extent possible.

It is paradoxical that donors underutilize existing talent in the region. Utilizing local expertise can strengthen local institutions, generate employment, and create opportunities for talented researchers in sub-Saharan Africa.

Recommendation 7-5. Greater dialogue between researchers and policy makers is necessary.

Not only is there an urgent need to increase indigenous capacity to conduct research, but there is also a need to better synthesize and translate research findings into effective prevention and control programs and policies. Otherwise, prevention programs will be only marginally based on local needs or tailored to local conditions, and research will be even more undervalued and underfunded. Researchers need to do a better job of drawing out the policy implications of their work, and planners and policy makers need to articulate more clearly to researchers what information they need for effective planning and programs.

Recommendation 7-6. If more effective strategies for AIDS prevention and mitigation are to be developed in the future, better coordination among donors is needed, particularly sharing of information about which prevention and control efforts work and which do not.

The role of the new cosponsored United Nations Programme on AIDS (UNAIDS) will be critical to future work. Success will also require greater political will and commitment on the part of the governments of sub-Saharan Africa and other countries.

CONCLUSION: THE NEED FOR BETTER BEHAVIORAL AND SOCIAL SCIENCE RESEARCH

Because AIDS is an epidemic firmly rooted in human behavior, driven by economic, cultural, and social conditions, the behavioral and social sciences are essential to identifying solutions for its control. Yet to date, most funding for HIV/AIDS research has been devoted to biomedical studies of the nature of the virus as a logical starting point for identifying a vaccine or a cure. 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. This assumption that the 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.

Effective prevention of HIV/AIDS will require 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 epidemic. More behavioral and social research is needed to develop effective and acceptable preventive strategies to refine successful programs and to help find more effective ways of mitigating the negative impacts of the epidemic.

The interpretation and utility of much epidemiological, behavioral, and social research have been limited by the lack of a multidisciplinary approach. Data on reported behavior change may be difficult to assess in the absence of biological validation that such change is reducing STD/HIV infection. Efforts to model the demographic effects of the HIV/AIDS epidemic are hindered by a paucity of data sets that combine fertility, mortality, migration, and other sociodemographic information with HIV serology. Conversely, serological studies that fail to collect adequate behavioral data miss an important opportunity to assess the effects of key factors in the spread of HIV, such as sexual practices and sexual networks within given populations. The design, execution, and analysis of clinical trials for STD control, HIV vaccines, antiretroviral drugs, and genital barrier methods and virucides all depend on appropriate behavioral research to guide enrollment; ensure adherence to trial protocols; and permit adequate interpretation of epidemiological results, including the very basic need to control for differential behavioral change between study groups.

Until new research is available, it is critical to keep trying the existing strategies that are believed to be most effective, as well as designing new and innovative ones. The epidemic is forcing people to rethink their values and behavior, and is changing the social context. Strategies and policies must 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.

Email: