6
Mitigating the Impact of the Epidemic

INTRODUCTION

As noted earlier, 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 (see Chapter 3). Approximately a dozen countries lying in a contiguous belt across central and eastern Africa account for more than 80 percent of all estimated HIV infections (see Chapter 1). 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. Through the year 2000, the impact of AIDS will increasingly be felt on populations in the sub-Saharan Africa region, particularly those lying in the main AIDS belt. 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 African populations in the year 2000 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



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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences 6 Mitigating the Impact of the Epidemic INTRODUCTION As noted earlier, 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 (see Chapter 3). Approximately a dozen countries lying in a contiguous belt across central and eastern Africa account for more than 80 percent of all estimated HIV infections (see Chapter 1). 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. Through the year 2000, the impact of AIDS will increasingly be felt on populations in the sub-Saharan Africa region, particularly those lying in the main AIDS belt. 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 African populations in the year 2000 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

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences economic resources. Care and support for orphans will be a growing concern, and traditional inheritance and other legal rights will be challenged. AIDS is one of many 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. First, the fatality of AIDS and the duration of the illness increase its impact per case relative to other causes of morbidity. The long incubation period of HIV implies that the economic impact of existing levels of infection will be felt for 10 years or more, even if all infection were to cease today. The benefits of averting a case of HIV (19.5 discounted healthy life-years) are very high relative to other diseases (Over and Piot, 1993). By this measure, HIV ranks lower than neonatal tetanus, but higher than other widespread illnesses such as malaria, tuberculosis, and measles. Second, HIV is likely to have a greater economic impact than other endemic diseases because it affects primarily adults in their economically most productive years (see also Chapter 3). In Africa, illness and death due to AIDS are concentrated among two age groups: newborn children, who acquire it perinatally, and adults between ages 15 and 50, who acquire it largely through sexual transmission. If one were to weight the years gained by averting a case of HIV by their productivity, HIV would rank highest among all diseases in terms of the value of preventing a case (Over and Piot, 1993). Adults aged 15 to 50 are usually the economic backbone of their families and their communities, on whom both young children and elderly parents rely for support. The illness and death of these economically active prime-age adults result not only in lower incomes for surviving family members, but also in all the other sequelae of poverty, including worsened health and reduced investment in the survivors' future productivity. Third, unlike many other endemic diseases, AIDS does not spare the elite. Levels of HIV prevalence among high-income, urban, and relatively well-educated men and women are as high as those among low-income and rural groups, if not higher. Because wealthier, more-skilled, and better-educated subsets of the population have higher levels of consumption and investment, command higher wages, and are more likely to be employers, any disease affecting this group relatively more than other groups is likely to have a greater economic impact per case. It is becoming increasingly evident that there is considerable divergence of opinion between industrialized and developing countries about the appropriate allocation of resources among various components of an African national AIDS control program. Industrial countries prefer to respond to the current and impending impact of the epidemic in Africa by donating their energy and resources to biomedical research and various prevention activities, while African governments feel an obligation to allocate resources not only to prevention, but also to mitigation of the direct impact on individuals and households already affected by the virus.

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences 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. When individuals voluntarily devote their own time and resources to help persons with AIDS or their surviving family members, they demonstrate through their actions that they place a high value on these activities. However, if governments are to channel resources away from other useful objectives toward mitigating the impact of the epidemic, there must first be reason to believe that the value to society of the proposed government interventions is at least as great as the cost of the resources devoted to the effort. Thus, research on this issue might improve the efficiency of current expenditures, as well as present a case for or against additional spending. Research questions arise about the degree to which resources should be diverted from efforts to prevent HIV infection or from other general development programs to finance mitigation interventions. On the one hand, these services provide access to basic human rights, such as an adequate standard of living, health care, and education. The obligation of governments and international organizations to support basic human rights need not be debated here. On the other hand, resources are limited. There are two logical preconditions for adopting government interventions to mitigate the impact of the HIV/AIDS epidemic. First, certain social units or groups must have indeed been substantially harmed by the epidemic. Second, government programs designed to either limit the damage or target assistance to those who have been harmed must produce effects above and beyond any adjustments that would be made in the absence of any interventions. Assuming that such programs are feasible, policy makers need guidance in choosing which programs to implement and how much to spend on such programs in view of the many competing needs for government resources. 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 persons already infected with the virus. To date, the small amount of research effort devoted to the effects of AIDS on households and societies in Africa pales in comparison with the magnitude of the problem. There is an acute shortage of quality studies on the economic, demographic, and social impacts of the disease on families in Africa (Caldwell et al., 1993). Perhaps the most widely cited book on the impacts of AIDS in Africa is based on a sample of approximately 130 households in Rakai, Uganda, of which only 20 were affected either directly or indirectly by AIDS (Barnett and Blaikie, 1992). Several other studies have been based on findings from fewer than 50 households (see Caldwell et al., 1993, for a brief review). The Paris-based International Children's Center is analyzing the impact of AIDS on 200 households that are the homes of people with AIDS sampled at a few selected health facilities in Côte d'Ivoire, Haiti, and Burundi.

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences The largest study to date, and the only one based on a representative, population-based sample, is the World Bank/University of Dar es Salaam study of approximately 800 households in Kagera, Tanzania, which has not been completed as of this writing. This study promises to provide valuable information about the economic impact of fatal adult illness in Kagera and adjacent, culturally similar areas of Uganda, Rwanda, Burundi, and Zaire. The relevance of the study findings for Southern or West Africa, where modes of production, fertility and marriage patterns, female labor-force participation rates, and traditional gender roles are different, is unknown. Consequently, the field suffers from the continual recycling of a small number of research findings, liberally supplemented with enormous amounts of anecdotal evidence of varying quality (Caldwell et al., 1993). In the rest of this chapter, we first consider the impact of HIV/AIDS in sub-Saharan Africa on people with AIDS, and then the impact on their extended family members and friends. We next consider the indirect effects of AIDS, both demographic and economic, on society at large. At each level of social organization, we review evidence regarding the magnitude of the epidemic's impact and explore the implications for the continent. We then examine the types of mitigation programs that are currently being implemented. Finally, we present recommendations on future research and data priorities. Annex 6-1 briefly surveys nongovernmental organizations currently implementing mitigation programs in sub-Saharan Africa. IMPACT ON PERSONS WITH HIV The ultimate fate of persons with HIV is well known. Virtually without exception, within 10 years of contracting the virus, individuals develop full-blown AIDS and die.1 But before the symptoms of AIDS develop, people living with HIV infection face ostracism, poverty, physical pain, and fear of impending death. Many individuals refuse to believe that they could be infected, and many who suspect they may be seropositive refuse to be tested. Given the harsh reality of the disease, some researchers have identified a surprising ''underreaction" to AIDS in Africa (Schoepf, 1988; Caldwell et al., 1994). There are numerous explanations for such an underreaction, including denial, shame, misunderstanding of the true risk of the disease, and a desire for silence because of the disease's association with illicit sexual behavior. These and other more obvious reasons for the silence about AIDS are discussed in detail in a seminal article by Caldwell and colleagues, who suggest that fatalism may also play a strong role: 1   See below for a discussion on the length of the latency period from HIV infection to an AIDS-defining opportunistic infection in Africa. See Chapter 3 for a discussion of the differences in the voracity of HIV-1 and HIV-2.

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences The most fundamental reason why the great majority of Africans are more sanguine than might have been predicted with regard to the AIDS epidemic is that they are not fully convinced that biomedical determinism is the only force operating in the world. … [The] African attitude toward illness and death rests on two partly related complexes of belief. The first is that there are different levels of causation. One is certainly the "natural" biomedical one, but this is triggered by other forces, chiding, punitive, or malevolent. The natural cause can be checked and reversed if the underlying force can be identified and appeased. The other is the belief in destiny, stronger in West Africa than in the East and South but probably not nonexistent in the latter areas. This, in its most extreme form, holds that the date of death is written and changes in lifestyle will not put off that event. The situation, even in most of West Africa, is usually more complex than this because of the concept of the employment of evil forces to cause premature death and the consequent need to identify this danger and take remedial action. AIDS can, and almost always does, result in premature death in that it occurs before old age, but such deaths predating the prescribed time are never solely biomedical. The HIV virus is merely the instrument (Caldwell et al., 1994:233-234). Whatever the correct explanation, this underreaction has obvious implications for the speed with which African governments are forced to respond to the epidemic and for the probability of persuading Africans to change their behavior to contain the epidemic. Stigmatization of the Seropositive Despite the reports of an underreaction to the epidemic by some Africans, there is no doubt that many people with AIDS in the subcontinent have been subjected to trauma and isolation. In much of Africa, AIDS is still highly stigmatizing, in part because of beliefs concerning its association with illicit sex. In Ghana, for example, the disease has come to be widely viewed as a disease of women, and more specifically of female prostitutes (Porter, 1994). Even in countries hardest hit by the epidemic, such as Tanzania, AIDS is still very much perceived as a disease of sin in certain provinces (Kaijage, 1994b). Discrimination against people with HIV/AIDS may be directed not only at those with the disease, but also at their families, friends, and caretakers and others with whom they have contact. In some cases, family members continue to be isolated, abused, or attacked after the death of the infected relation, partly because, as explained above, in many societies in sub-Saharan Africa the disease may be ascribed to supernatural causes, often associated with earlier misdeeds (Castle, 1994). Families who care for their chronically ill relatives may try not to let the nature of the ailment become known (Lwihula et al., 1993). A person with AIDS in Burundi explained: Now I am lonely, nobody comes to visit me except the doctor and the nurses. Yet, I have many relations here. I have many friends! But everybody has

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences abandoned me. I am disappointed! They certainly suspected that I had AIDS (Ministère de la Santé, 1992, cited in IRESCO, 1995:35). Although the various dimensions and repercussions of stigmatization may be difficult to quantify, they are an extremely important aspect of the burden of AIDS in the region. Increasingly, counseling in preventing new infections and limiting the destructive forces of stigmatization and discrimination is being recognized as an essential part of caring for people with AIDS.2 Economic Hardship Due to HIV Evidence about the magnitude of the economic impact of AIDS at the individual level is scarce and generally qualitative in nature (see below) (Ainsworth and Over, 1994a, 1994b). Certainly, people with AIDS face high medical bills and an uncertain economic future. As their health degenerates, illness results in the loss of income-earning potential, while at the same time many persons with AIDS spend their household savings in trying to treat various opportunistic infections or find a cure for AIDS itself. Anecdotal reports of workplace discrimination have been documented in a number of African countries affected by the HIV/AIDS epidemic. For example, in some areas of sub-Saharan Africa, employers are reportedly subject to prison terms and fines if they hire HIV-infected people (Danziger, 1994). Government officials in another country have encouraged employers to test workers and dismiss those who are infected (Cohen and Wiseberg, 1990, cited in Danziger, 1994). The experience of AIDS-related discrimination can include social ostracism and exclusion from usual networks for accessing emergency resources. Ignorance of modes of transmission of the virus can result in abandonment of people with HIV/AIDS by their relatives and expulsion from the family safety net, leaving the infected completely destitute (Awusabo-Asare and Agyeman, 1993). Care for People with AIDS In those parts of Africa where the epidemic is already fairly advanced, AIDS has become a part of everyday life, and the need for care is most urgent. Extensive treatment protocols have been developed for people with AIDS in industrialized countries. However, these protocols are less relevant in Africa because of a shortage of manpower and resources for the treatment and care of people with AIDS and regional variations in the prevalence of certain opportunistic infections, such as tuberculosis and Pneumocystis carinii pneumonia (Schopper and 2    See M'Pelé et al. (1994) for a recent review of the impact of counseling programs in Africa.

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences Walley, 1992). Diagnosing HIV-related diseases and providing care for people with AIDS in Africa is further complicated by the fact that HIV-related diseases often develop atypical clinical manifestations and may occur simultaneously, even in the same organs (Colebunders and Kapita, 1994). Furthermore, treatments are not available for some HIV-related diseases, and people with AIDS often experience serious side effects of drugs (Colebunders and Kapita, 1994). A great deal of debate and controversy surround the level of appropriate care for people with AIDS (see, for example, Katabira and Wabitsch, 1991; De Cock et al., 1993; Biggar, 1993; Foster, 1994). For example, De Cock et al. (1993) set forth the treatment and care needs at different stages of the disease process: the seropositive person without symptoms of full-blown AIDS needs outpatient care and prophylaxes for opportunistic infections; the mildly to intermediately ill person needs to be actively treated for opportunistic infections as they arise; and those in the end stage of the disease need access to hospice care and continuing pain control. Unfortunately, providing extensive medical care to people at all stages of the disease would be prohibitively expensive in Africa (World Bank, 1992a; Biggar, 1993; Foster, 1994; Ainsworth and Over, 1994a). Given the magnitude of the problem and the corresponding amount of money that would need to be transferred into the health sector from elsewhere, the question of what constitutes adequate care for those with AIDS is, in all likelihood, more likely a political than a research question. The challenge for researchers and the medical community is to devise ways of treating people with AIDS at lower cost without seriously compromising the quality of their care. Several African countries are already experimenting with various models of outpatient and home-based care as alternatives to hospitalization. Home-based care is also an effective way to involve families and communities in AIDS care and support (World Health Organization, 1991). Preliminary results from a study of the costs of home-based care in Zambia indicate that community-initiated care is considerably cheaper than hospital-initiated alternatives. Furthermore, the average duration of a visit by a health-care worker was typically longer with the community-initiated home care, indicating substantial variation in the types of service provided under alternative health-care models (Chela et al., 1994). A study of AIDS treatment costs in Tanzania found that a shift from in patient to outpatient care can produce considerable cost savings to the health-care sector (World Bank, 1992a). In Rwanda, a training course designed to teach families how to care for people with AIDS at home appears to have enabled the families to do better with managing AIDS-related problems; moreover, the volunteer trainers seem to have provided family members with much-needed emotional support (Schietinger et al., 1993). A review of six home-based care programs in Uganda and Zambia seems to confirm the hypotheses that home-based care can improve the quality of life for people with AIDS and reduces pressure on hospital beds (World Health Organization, 1991). At the same time, the results of a research project undertaken in South Africa

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences indicate that a substantial proportion of the burden of caring for people with AIDS could be borne in primary health facilities (Metrikin et al., 1995). The need for medical, economic, and emotional support implies that the best care might be provided by a "multidisciplinary team" (Brugha, 1994). Perhaps the best-known model of hospital-initiated outreach service is the Chikankata program in Zambia, initiated in 1987. (Chikankata Mission Hospital is a 240-bed general hospital run by the Salvation Army that serves a predominantly rural community of approximately 150,000 nearby residents.) The mobile home-care team consists of a clinical officer, a nurse, an assistant AIDS educator, and a driver who visits between five and eight people each day, three days a week (Chela and Siankanga, 1991). Regardless of the level of outside medical attention that is available, however, much of the care received by people with AIDS is provided by household members. The largest portion of this burden is borne by women (Caldwell et al., 1993; Kaijage, 1994a, 1994b). Individuals, families, and communities need to be better educated about how best to provide safe and compassionate AIDS care at home. In this regard, WHO—in collaboration with The AIDS Support Organization (TASO), Uganda; the Nsambya Hospital, Order of St. Francis, Uganda; and the Salvation Army Chikankata Mission Hospital, Zambia—recently developed a handbook for AIDS home care for use in sub-Saharan Africa (World Health Organization, 1993). IMPACT ON EXTENDED FAMILY MEMBERS AND FRIENDS Early deaths due to AIDS are generating large numbers of people who are at increased risk of poverty. A death in the household or the family as a result of AIDS or any other illness can have profound implications for resource allocation, production, consumption, savings, investment, and the well being of survivors (Ainsworth and Over, 1994a).3 As noted earlier, the age structure of the infected population is heavily weighted toward those in their most productive years (see Chapter 3), so that many of those who die are the sole breadwinners in the household. Therefore, AIDS has an unusually devastating effect on the entire household, both through loss of income and through dissolution of normal social relationships within the family. Adults aged 15 to 50 are usually the economic 3    One of the most striking features of African social organization is that it downplays the role of the nuclear family and, in its place, stresses the importance of kinship and clan networks. Consequently, the interpretation of what defines a household or a family can vary considerably across societies. Obviously, one cannot do justice to the complete range of patterns of social organization in Africa here, but suffice it to say that the terms "household" and "family" in Africa often refer to quite different collections of individuals. This distinction is important to remember when comparing household-and family-level impacts across different societies.

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences backbone of their families and their communities, providers on whom both young children and elderly parents rely for support. Consequently, the illness and death of these economically active prime-age adults result not only in higher medical expenses and lower incomes for family members, but also in many other sequelae of poverty, including worsened health and reduced investment in the future productivity of their survivors. Because deterioration from AIDS is such a slow process, many families exhaust their entire savings before the person with AIDS dies. Furthermore, families lose income not only from the infected person, but also from other family members involved in his or her care. This loss is especially significant in families with more than one infected person. Finally, apart from losing a valuable contributor to household labor supply, survivors may also lose access to land, housing, or other assets. Understanding and accurately predicting the long-term impact of HIV/AIDS on society depends critically on our understanding of how individual decision making is affected by the epidemic. For example, if individuals trust both in the future and in their fellow citizens, they are more likely to save a portion of their current income and invest those savings in risky, but potentially profitable, enterprises. Savings from current consumption can be invested (directly or through the intermediary of a savings bank or association) either in physical capital (e.g., a new irrigation pump) or human capital (e.g., a child's education or training). Thus, the HIV/AIDS epidemic makes immediately relevant the question of whether an individual's belief that he or she is or is likely to become infected causes that person to save or invest less. Some economists have argued that one of the underlying causes of slow development in Africa has been the failure of states to develop dependable judicial and social mechanisms for enforcing contracts and thereby lowering the transaction costs for all concerned. Will people continue to choose to invest time, energy, and capital in social relations and the economy if they know that they, or others around them, are HIV-infected? Normal social relations, built on a degree of faith in the future and mutual trust, may be one of the most neglected casualties of HIV/AIDS in Africa. Relationships of trust that depend upon the participants' both knowing that they will be trading together for years to come may dissolve quickly if one or both of the participants become aware that either is infected with HIV. This observation raises the question of whether the epidemic, by reducing the willingness of individuals to trust one another, increases transaction costs and if so, whether government intervention could mitigate that increase. Many AIDS researchers have indicated that people in Africa are unconcerned about HIV because of its long incubation period. Apparently, in the calculus of everyday life, the slow plague is a low priority for many (Caldwell et al., 1994). By the time one dies from AIDS, the logic goes, one could well have died from other things many times over (Schoepf, 1988). If a disinterest in long-term planning is independent of (or even partially causes) the sweeping prevalence of HIV, we would not anticipate transaction costs to increase perceptibly

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences with the rising prevalence of AIDS. In this scenario, AIDS would not add significantly to all the other reasons for uncertainty or doubt already endemic to the continent. Most of the evidence produced so far on the impact of the epidemic at the household level has been of extremely variable quality and often anecdotal in nature. In one of the few field studies of the economic effects of AIDS in Africa, Barnett and Blaikie (1992) describe the results of their fieldwork undertaken in 1989 on a sample of 129 households in the Rakai district of Uganda. The authors were able to provide many rich anecdotes of how the 20 households in their sample might have been affected either directly or indirectly by AIDS, including a reduction in the production of food crops, a gradual depletion of household assets, a withdrawal of children from school, and an increase in household malnutrition. However, they were unable to show that the epidemic had affected producer-consumer ratios in these households, or indeed that any of the supposed effects of AIDS were suffered more frequently or to a greater degree by the 20 AIDS-affected households than by other households. Furthermore, there was no discernible impact on total agricultural production in the Rakai district. The authors (Barnett and Blaikie, 1992:102) conclude that: … by 1989/90, AIDS had not yet drawn adaptive responses in production and consumption on a scale that dwarfed the many other adaptations households make all the time in response to other rapid processes of socioeconomic change. However, we believe that in certain localized areas AIDS is beginning to be the major determinant of socioeconomic change. The ability of a household to cope with an AIDS illness and death is clearly a function of many factors, including the socioeconomic characteristics of the household, the economic role of the person with AIDS within the household (particularly how his/her illness affects household income), the household's access to alternative sources of income or support, the level of social and material support available to the household, and so forth. It is analytically convenient to divide the costs to the household of incurring a case of AIDS into three components: (1) direct costs associated with medical expenses; (2) indirect costs to the household directly afflicted with AIDS in terms of forgone earnings; and (3) indirect costs to other households, associated with contributing to funeral expenses or caring for orphaned children (Ainsworth and Rwegarulira, 1992). Because AIDS manifests itself in a series of other diseases, the direct costs incurred by people with AIDS in seeking medical attention prior to their death can be considerable. The average cost of health care per HIV-seropositive patient admitted to Mama Yemo Hospital in Kinshasa, Zaire, was US $170, compared with US $110 per HIV-seronegative patient (Hassig et al., 1990). The direct costs of medical treatment of AIDS in Tanzania have been estimated at between US $104 and US $631 per person (Over et al., 1988). More recent estimates from

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences South Africa and Zimbabwe indicate that the direct costs of treatment can sometimes reach several thousand dollars per person (Ainsworth and Over, 1994b). Besides the cost of medical care for the chronically ill, when the person with AIDS eventually dies, the household encounters further costs associated with the funeral and with lost production during a period of mourning. If the deceased lived away from the village, the family must usually pay for the body to be transported back to his or her home area, as well as for the transportation, food, and lodging of mourners. These costs can be considerable. For example, in Kinshasa, Zaire, families have been estimated to spend an average of US $320 for the funeral of a child who died of AIDS (Foster, 1993, cited in Ainsworth and Over, 1994a). In 1991, in the Kagera region of Tanzania, families were estimated to spend approximately US $60 for a single death, of which 60 percent was spent for the funeral (Over and Mujinja, 1993). Such expenditures are a substantial burden in a country where gross national product per capita was US $100 in 1991 (World Bank, 1993). Households in Kagera also contribute to expenses associated with the death of relatives who live outside the household. In 1991, this contribution was estimated to be approximately US $7 per death, of which 79 percent was for funeral expenses. At the same time, the period of mourning may have been reduced in Kagera from 7 to between zero and 3 days, a change implying that the annual cost of lost production has become quite high (Lwihula and Over, 1993). Caring for Survivors: Children and the Elderly Among the survivors severely affected by HIV/AIDS are dependents left without economic support. The increase in the number of orphans resulting from the HIV/AIDS epidemic may overwhelm traditional systems of adoption or institutional-care alternatives, so that the development of feasible and culturally acceptable models of child care for the minor children of people with AIDS will become a major challenge in upcoming years (Preble, 1990; Obbo, 1993). At the same time, elderly persons who have lost their adult children face potential economic hardship and the prospect of raising their grandchildren on their own. Several studies have estimated the number of AIDS orphans that will result from the AIDS crisis. The reliability of these studies is uncertain, and the estimates they yield vary widely. Nevertheless, the bottom line is that no matter what the actual number, orphanhood as a result of AIDS will become an increasingly large problem (see Ainsworth and Over, 1994a, 1994b). In Africa, the extended family usually takes the place of the social welfare systems in industrialized countries. Furthermore, in some parts of the continent, but particularly in West Africa, there is a strong tradition of children being raised by people other than their biological parents (Page, 1989). These foster parents assume both the costs and the benefits associated with childrearing. In Sierra Leone, foster parents can be relatives, friends, neighbors, or patrons, and many may not even be

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences of the RPED survey reported in Table 6-4 demonstrate the difficulty of measuring the mortality rate among professionals through sample survey techniques: even in a survey of 600 firms, the total number of top-level professionals is so small that very few deaths are reported. 7 Summary The impact of HIV/AIDS on life in sub-Saharan Africa is fragmented. For individual people living with infection and all the social ramifications it brings, the disease is devastating. On the other hand, the epidemic may not have the drastic effect on economies that was first imagined. Unifying these disparate interpretations of the impact of AIDS is difficult. Clearly, preventing and assuaging human suffering is important. Yet not all people with AIDS are poor, and not all of the poor have AIDS, so there are numerous other ways to allocate scarce resources. With resources so precious, other poverty-alleviation intervention efforts compete with AIDS mitigation for attention. How can mitigation of HIV/AIDS be responsibly integrated into the general health-improvement/poverty-reduction package? We now turn to a discussion of mitigation programs, both actual and potential. ATTEMPTS TO MITIGATE THE IMPACT OF HIV/AIDS Many donors believe that government or donor intervention is unlikely to have much effect on the severity of the epidemic's impact, and that resources would be better spent on interventions designed to prevent the spread of HIV. These beliefs are unchallenged by any broad-based, representative, empirical information about what kinds of programs are currently under way to mitigate the impact of the epidemic on the survivors and how successful they have been to date. Current interventions to mitigate the deleterious effects of HIV/AIDS in sub-Saharan Africa are implemented by a variety of organizations, governments, local and national nongovernmental organizations, international aid organizations, and grassroots groups, and are targeted to a variety of recipients. Many of these groups are performing important and worthwhile work. Yet the question raised earlier of best use of resources returns: How can the negative impact of AIDS on sub-Saharan Africa best be assuaged? 7    Suppose that each of the 601 firms in the sample had only one professional-or managerial-level employee, who was the head of the firm. Then the 8 deaths reported in Table 5-4 would constitute an adult mortality rate of 13 per 1,000, which would be consistent with a seroprevalence of between 5 and 10 percent. If the average were two professionals/managers per firm, the mortality rate would be only 7 per 1,000, a rate insufficiently high to show the effect of an HIV/AIDS epidemic. Of course, firms whose head had died in the last year would be under-represented in the sample if such firms were more likely than others to disintegrate.

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences Mitigation interventions can be classified along three dimensions: by the level of social organization of the intended beneficiary, by the type of social or governmental organization rendering support, and by the type of support rendered. This section examines the distinctions that can be drawn along each of these dimensions in turn and identifies associated issues. Intended Beneficiary Assistance can be provided directly to a person with HIV or AIDS, to the individual's entire household, to a village or community affected by AIDS, to a geographic region containing many villages, to a firm (whether it be in the formal or informal sector), to a government entity (such as a university or ministry), to a specific economic sector or industry (such as the trucking industry), or perhaps to an entire national economy. Since the provision of any kind of assistance to everyone affected in a country would be prohibitively expensive, a key issue is how the recipients of assistance are selected. The assisting entity might choose beneficiaries informally and subjectively, or it might use a formal set of targeting criteria to determine eligibility. An alternative would be to provide a form of assistance that would have little or no value to people outside the class of desired beneficiaries. An example of such a "self-targeting" assistance program would be home care for people with AIDS, which would be neither needed nor desired by a household without a person having the disease. The application of formal criteria for eligibility consumes resources that could otherwise finance more of whatever type of assistance is being rendered. Therefore, assistance agencies face the problem of designing criteria that will discriminate successfully between intended recipients and others on a relatively easy and inexpensive basis. Furthermore, all such targeting criteria, once known to the public, are vulnerable in varying degrees to opportunistic behavior intended to divert assistance to recipients who would otherwise not qualify. Providers of Mitigation Assistance Providers of assistance can be family members, neighbors, local communities, formal or informal financial institutions, local or international nongovernmental organizations, or government agencies. Any of these providers can operate with or without the support of bilateral or multilateral donors. In view of the potential for opportunism discussed above, a critical issue in the implementation of targeted assistance programs is the ease with which providers of assistance can gather information on the characteristics of potential recipients. Generally speaking, providers of assistance that are located close to the potential recipients will have access to better information about recipients than will a more distant provider. For example, family members and neighbors

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences are in a better position to judge the need of an individual or household for assistance than is a local nongovernmental organization, which in turn would have an advantage in this regard over a national government agency or a bilateral donor. Types of Mitigation Help Being Provided In evaluating the costs and effects of proposed programs, total program costs must be categorized as fixed or variable. Then, for each type of program, it is necessary to propose an indicator or output measure that can serve as the denominator in computing both types of costs. The institutional framework or context and its effect on costs, particularly on fixed costs, must be carefully specified as well. The fundamental evaluation issue is how to compare the outputs of the different interventions. This comparison is relatively easy in the area of prevention because one can compare, at least theoretically, all the different possible interventions with respect to the number of (primary and secondary) cases of HIV each prevents per dollar. Not only is it difficult to compare the benefit of assisting an orphan to attend school with the benefit of averting a case of HIV infection, but it is even difficult to compare the benefits of two mitigation interventions. For example, how does one compare a program that assists a dying person with AIDS and another that helps the surviving household members? A related issue is how to weigh assistance to improve a household's well-being immediately after an AIDS death (for example, by providing food) against assistance that improves the future well-being of the surviving children (for example, by helping them to stay in school). One impact of the epidemic is an increase in the cost of insurance, both formal and informal. Thus, a potential type of assistance would be to subsidize insurance premiums. In the formal sector, this subsidy would help people prepare for the possibility that a family member would get sick, while also increasing the national saving rate. The comparable intervention in rural areas without formal insurance might be to subsidize rural credit programs that would help people self-insure ex ante through precautionary savings or cope ex post with the shock of a death in the household. While informal information about AIDS support projects is widespread, databanks of "who does what" are rare and incomplete. Relatively little information is available about mitigation efforts, and certainly nothing is available about their effectiveness. There is an urgent need for hard data on the cost-effectiveness of alternative mechanisms for assisting severely affected households. On the cost side, little is known regarding the unit cost of delivering a package of welfare services of known quality. A rather superficial investigation of nongovernmental organization social and economic support activity reported in the annex to this chapter indicates that large numbers of organizations are engaged in these activities and

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences that many of the best-developed of these organizations do not exist primarily to respond to the epidemic. This suggestive information calls for a deeper investigation of the characteristics of the broad range of for-profit and nonprofit nongovernmental institutions involved, regardless of their previous connection to the epidemic, and of the links between these characteristics and the institution's capacity to implement various kinds of prevention and mitigation programs. Such research would inform, for example, the development of criteria to be used in judging the relative competence of alternative nongovernmental organizations bidding for a given contract. RECOMMENDATIONS The following are recommendations for future research in the area of mitigating the impact of the HIV/AIDS epidemic. 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-prevention 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

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

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences ANNEX 6-1: A BRIEF SURVEY OF NONGOVERNMENTAL ORGANIZATIONS IMPLEMENTING MITIGATION PROGRAMS IN SUB-SAHARAN AFRICA In an attempt to alleviate partially the dearth of information on mitigation activities, the panel recruited consultants in each of six sub-Saharan countries to administer a standard questionnaire to a selected sample of nongovernmental organizations (NGOs) in each country. The first and second columns of Table 6A-1 list the countries that participated in the survey and the number of questionnaires received from each. There was no attempt to define a formal sampling frame for each country, but the consultants were asked to sample a broad range of NGOs, not restricting themselves to those that were established explicitly in response to the HIV/AIDS epidemic. Because the consultants were themselves associated with the struggle against the epidemic in several countries, this strategy was successful only in Tanzania and Zambia, where few of the NGOs sampled are explicitly related to the epidemic (see column 3 of Table 6A-1). Ironically, in Cameroon, where the epidemic and the struggle against it are less advanced, all the examples in our sample of NGOs mention AIDS prevention among their objectives or goals. Column 4 of Table 6A-1 shows that among the NGOs that mention AIDS in describing themselves, approximately half also mentioned mitigation of the epidemic's impact. TABLE 6A-1 Sample of Nongovernmental Organizations by Country, and Whether Prevention or Mitigation of the Impact of AIDS is Among Their Objectives or Goals Country Number of Questionnaires Received Percent Naming as Goal or Objective Prevention Mitigation Cameroon 25 100 32 Côte d'Ivoire 5 80 60 Kenya 5 80 40 Tanzania 22 45 27 Zambia 13 8 8 Zimbabwe 5 100 80 Total 75 65 32

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences TABLE 6A-2 Comparison of AIDS and Other Nongovernmental Organizations (NGO): Scale of Operations Characteristic of NGO General NGO AIDS NGO Total Average year of origination 1973; (26) 1986; (49) 1982; (75) Total workers (volunteer & salaried) 97; (26) 68; (49) 78; (75) Percentage of workers who are volunteers 32; (26) 76; (49) 61; (75) Monthly expenditure (in 1995 US dollars) 12,749; (14) 1,097; (28) 4,981; (42) Total number of individual beneficiaries in last 3 months 3,661; (23) 37,094; (45) 25,786; (68) Total number of household beneficiaries in last 3 months 55,057; (23) 28; (45) 18,640; (68) Total number of community beneficiaries in last 3 months 26,538; (23) 2,739; (45) 10,788; (68) NOTE: The number of responses to each question is given in parentheses. Table 6A-2 presents the responses to several of the questions in the survey, classified by whether or not the NGO mentioned AIDS among its goals or objectives. Since most of the NGOs outside Tanzania and Zambia are connected to AIDS, the differences between the two groups might also be due to differences between NGOs operating in Tanzania and Zambia and those in other countries. As might be expected, the NGOs established for purposes other than AIDS are on average about 13 years older than those whose objectives or goals mention the epidemic. Perhaps because these general-purpose NGOs are older, they seem to be better established by any of the other measures in Table 6A-2. That is, they have 43 percent more workers and four times as many salaried workers. The average dollar budget of the 14 non-AIDS NGOs answering the questionnaire is almost 12 times as large as the average budget of the 28 AIDS NGOs interviewed. The non-AIDS NGOs count more households, communities, and firms as beneficiaries. The AIDS NGOs exceed the other NGOs on only one dimension—the average number of individual beneficiaries—and this difference disappears if we drop one outlier that claims to serve 1.5 million individual beneficiaries throughout Cameroon. Similarly, we can separately examine the 48 AIDS-related NGOs to discover that those which mention mitigation of the impact of the epidemic are about the

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences FIGURE 6A-1 Types of Mitigation Interventions Provided (total of all countries). same age as those which do not. However, they have smaller budgets and fewer workers, use a smaller percentage of volunteers, and serve fewer individuals and firms, although they serve more communities and are more urban, than those which do not mention mitigation. Figure 6A-1 presents the types of mitigation interventions offered by the NGOs in the sample. The question of intervention type is pertinent to the question of effectiveness, as discussed earlier in this chapter. Although the sample is small and not random, this graph demonstrates the diversity of projects loosely termed "mitigation." Surprisingly, economic assistance, whether in cash or in kind, constitutes only 26 percent of the mitigation effort. If self-help projects are added, the cumulative total is still only 34 percent. Counseling, which has both a supportive and preventative role, is the primary service provided by NGOs for people with HIV/AIDS in Africa; 50 percent of the program components described by the NGOs fit into this category. Figure 6A-2 shows how many program components per NGO are dedicated

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences FIGURE 6A-2 Primary Beneficiary of Mitigation Efforts. to providing services to each of three beneficiary groups: individuals with AIDS, their families, and the community as a whole. Each of the three groups is beneficiary of about one-third of the program components, but the families of people with AIDS are the intended beneficiaries of slightly more components than either the people with AIDS themselves or the community at large. Table 6A-3 compares the sources of funding for AIDS and non-AIDS NGOs. Although AIDS NGOs are smaller and have smaller budgets than other NGOs, Table 6A-3 reveals that they take less advantage of every source of financing than do the other NGOs. With due regard to the small sample, which renders the differences statistically insignificant, and the fact that almost all the non-AIDS NGOs are in two countries, Table 6A-3 communicates the strong suggestion that AIDS-related NGOs are doing less than they could to raise funds. Similar analysis of only the AIDS NGOs shows that those which profess mitigation as one of their objectives are slightly more likely than those which do not to gain funds from both religious and nonreligious sources, while having equal access to bilateral donors and beneficiary fees. The mitigation NGOs are also slightly less

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences TABLE 6A-3 Comparison of AIDS and Other Nongovernmental Organizations (NGO): Funding Sources   Percent Receiving Funds by Type of NGO     Sources of Funding General NGO AIDS NGO Multipliera (t-statistic) Fees charged beneficiaries 23 13 2.43 (1.6) Member dues 77 71 0.19 (-2.5) Government grants 42 2 3.25 (2.2) Local groups 54 29 8.85 (3.9) International religious organizations 27 20 1.15 (.27) International nonreligious NGOs 81 33 2.64 (1.5) International bilateral donors 54 31 3.71 (2.5) Other 58 57 1.26 (.59) N 26 49     a Multipliers are the antilogs of the coefficients on the dummy variables for the indicated funding source in a regression explaining the logarithm of the monthly dollar budget. The R-squared is .83 on 41 observations, and the antilog of the estimated constant term is US $191, with a t-statistic of 8.3. likely to fix membership dues, perhaps because many of the individuals they serve are destitute as a result of the epidemic. The last column of Table 6A-3 explores the question of whether some of the funding sources are statistically more associated than others with (the logarithm of) the monthly dollar budget of the type of organization. The regression fits extremely well, with coefficients that are highly statistically significant on several funding categories. The figures listed in column 3 of Table 6A-3 are estimates of the multiple by which an organization could increase its monthly budget if it took advantage of one of these funding sources, having not previously done so. Note that organizations that are successful at tapping the resources of local community groups achieve monthly expenditures 885 percent larger than those which do not. The source of funds with the second-largest estimated impact on monthly expenditures is the bilateral agency representing a developed country, which is estimated to increase monthly expenditures by 271 percent. Local

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Preventing and Mitigating AIDS in Sub-Saharan Africa: Research and Data Priorities for the Social and Behavioral Sciences TABLE 6A-4 Operation of Social and Economic Programs by Nongovernmental Organization Goals   Type of Program Goal of NGO Mitigation Other Total Prevention 99 (58%) 72 (42%) 171 (100%) Other 57 (50%) 57 (50%) 114 (100%) Total 156 (55%) 129 (45%) 285 (100%) government resources come next, with an estimated increase of 225 percent, while reliance on membership dues is apparently associated with a net decrease in total expenditures of 81 percent. A possible interpretation of this last finding is that members are quite parsimonious with organization resources when those resources come from their own pockets, but less so when the resources are raised outside. The 75 individual NGOs in the sample operate a total of 288 separate programs or program components. Using the organization's description of the activities associated with each program, it is possible to score each component with a zero or a 1 on mitigation, depending on whether it includes any social or economic support activities. Such programs can provide substantial assistance to AIDS-affected households, regardless of whether the program was originally intended to address the impact of AIDS. Table 6A-4 shows the percentage of programs capable of helping households and other social units cope with the impact of AIDS by type of NGO. Of the 171 programs operated by AIDS-related NGOs, 58 percent have a social or economic objective and thus can help individuals, households, or other social units cope with the impact. However, the proportion of the 114 components operated by other NGOs that includes social or economic activities is 50 percent, almost as large. The lesson here is that governments should not look only to AIDS-related NGOs as potential operators of mitigation programs. In fact, if the greater experience and resources of the non-AIDS NGOs in this sample can be generalized to other settings, a mitigation program may have more chance of success if it is implemented by a non-AIDS NGO.