The biological impact of social responses to the AIDS epidemic.

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The biological impact of social responses to the AIDS epidemic Janet W. McGrath

a b c

a

Assistant Professor of Anthropology , Case Western Reserve University

b

Secretary of the AIDS and Anthropology Research Group

c

Member of the Executive Committee of the Task Force on AIDS , American Anthropological Association Published online: 12 May 2010.

To cite this article: Janet W. McGrath (1993) The biological impact of social responses to the AIDS epidemic, Medical Anthropology: Cross-Cultural Studies in Health and Illness, 15:1, 63-79, DOI: 10.1080/01459740.1992.9966082 To link to this article: http://dx.doi.org/10.1080/01459740.1992.9966082

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The Biological Impact of Social Responses to the AIDS Epidemic Downloaded by [Bibliothèques de l'Université de Montréal] at 09:27 02 December 2014

Janet W. McGrath This paper examines the extent to which social responses to the AIDS epidemic contribute to the continued transmission of the virus, thereby exacerbating the biological impact of the epidemic. Following the model of McGrath (1991), social responses to AIDS are examined in terms of their impact on potential transmission of HIV. Responses are evaluated using established criteria for decreasing disease transmission: eliminating the source of infection, eliminating contact necessary for infection, decreasing susceptibility of hosts, or decreasing the infectivity of infectious persons. The most frequent responses to AIDS have been scapegoating, resulting in ostracism, stigma, and blame; resignation; use of alternative therapies; political mobilization; and research. With the exception of political mobilization in some communities, the social responses to AIDS have not decreased the biological impact of the epidemic, and, therefore, may not be "biologically appropriate". Key words: AIDS, epidemics, responses to disease, social disruption

INTRODUCTION Throughout history epidemics have disrupted social function, leading to higher rates of morbidity and mortality than expected based on biological factors alone (e.g., McGrath 1991, McNeill 1976, Neel et al. 1970, Squire 1882). This results directly from the inability to care for the sick and their dependents and indirectly from the disruption of social system functioning (McGrath 1991). How a social group responds to a disease may therefore affect its epidemiological course and increase its biological impact through a breakdown in normal social function, here defined as a breakdown in the structures and organizations that provide health care, economic activities, and governmental functions. This paper examines the extent to which social responses to AIDS may contribute to the biological impact of the epidemic. Elsewhere I proposed a general model to evaluate the extent to which a set of behaviors, made in response to a given biological crisis, successfully mitigates the impact of the biological stress on the population, what I refer to as "biological appropriateness" (McGrath 1991). This paper builds on the earlier one, focusing on bio-behavioral interactions at the level of the social group.

JANET W. MCGRATH, Assistant Professor of Anthropology at Case Western Reserve University, is a biological anthropologist with broad interests in the impact of disease on human populations. She is Secretary of the AIDS and Anthropology Research Group and a member of the Executive Committee of the American Anthropological Association's Task Force on AIDS. She has recently completed research on the impact of AIDS in Uganda. 63

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64 ]. W. McGrath

The purpose of the present discussion is not to empirically establish the biological impact of social responses to AIDS, but rather to speculate, using the theoretical framework provided by the proposed model, how various responses to AIDS may or may not be contributing to the control of the epidemic. I will not discuss AIDS in only one location, instead I look at patterns of responses and suggest how these responses may affect the course of the AIDS epidemic. Therefore, this discussion will not be linked to a specific cultural group, although it is recognized that the examination of the specifics of any particular epidemic cannot be completely divorced from the cultural context within which they occur. Indeed, consideration of the specific cultural context is imperative for the generation of testable hypotheses about the interaction of behavioral responses and biological outcomes. My discussion outlines a potentially useful way to evaluate the consequences of how we are responding to the AIDS epidemic. It is my hope that this broadbased discussion will lead to further investigations of the biological impact of social responses to AIDS in specific biological and cultural contexts around the world.

THE BIOLOGICAL APPROPRIATENESS OF SOCIAL RESPONSES TO DISEASE

One way to decrease the biological impact of an epidemic is to decrease incidence. Therefore, the degree to which a social response decreases incidence represents its biological appropriateness. There are four ways to decrease incidence of infection: 1) eliminate the source of infection; 2) eliminate adequate contact between the source of infection and susceptible individuals; 3) decrease infectivity of infected individuals; and 4) decrease susceptibility of uninfected individuals. If a particular response fails to meet any of these conditions then it is not biologically appropriate and if all else is equal1, the epidemic will continue. Since the range of diseases exceeds the spectrum of social responses to disease (Musto 1990:73), an examination of historical responses to disease can delimit the likely responses in our own time. The first step is to briefly examine the social responses to epidemics as reported in different societies and then examine responses to AIDS as observed today. The initial response to any disease is to employ familiar methods for fighting disease (McGrath 1991). This response has the "least stakes", that is, there is little energy invested or resources used up in such a response because it comes from the normal repertoire of activities (see Slobodkin and Rapoport 1974)2. New events are coded as if they are part of a set of "normal perturbations" to which a response has been developed (Slobodkin 1968). For example, if a disease is manifested as a fever, familiar ways to fight fever are tried first. If they do not work, then other responses follow. Most commonly, the subsequent response to epidemics is flight, followed by use of extraordinary measures for treatment or prevention, scapegoating, resignation or acceptance, ostracism, and intragroup conflict (McGrath 1991). Because ethnographic accounts of epidemics are skewed towards acute infections, this list of responses is biased toward responses to dramatic outbreaks. Nevertheless, this list serves as a framework for examining responses to AIDS.

Impact of Responses to AIDS 65


RESPONSES TO AIDS Flight

Flight is an "avoidance response" that works best if a problem is both localized and intense (Thomas, Winterhalder, and McRae 1979). Intensity reflects the "costs" of other responses which seem less likely to work. If the problem is not localized then avoidance through flight is less appropriate. It was several years before the intensity of the AIDS epidemic reached a level sufficient to generate widespread concern, and by that time the epidemic was not strictly localized, although prevalence levels vary greatly between locations. Because of the long time before a significant number of AIDS cases accumulate in a population, experience with the disease builds over time, diminishing the likelihood of "panic flight". As a result, flight is not widely reported as a response to AIDS, although there have been anecdotal reports that gay men have fled urban epicenters of the epidemic in the United States. Finally, because HTV infected persons may show no symptoms it cannot be judged when to flee or even where to flee to that would be safe. In addition, flight results from fear. Whereas people fled from the plague in the 14th century because of fear of contagion, people today have not fled because the specific behaviors leading to HTV transmission were widely recognized early in the epidemic. The means of transmission is widely accepted today, although people may simultaneously maintain models of disease transmission and etiology that have not been scientifically validated (e.g., McGrath et al. in press). At the crux of the issue is the perception of risk. In a susceptible population infectious diseases like cholera strike everyone equally, regardless of age or gender. HIV/AIDS, occurring primarily in sexually active adults and their young children, has a limited distribution. More importantly, HIV infection is spread through specific behaviors that a person may or may not engage in. The apparent non-random distribution of HIV eliminates general contagion as a likely explanation, so that not everyone feels at risk of HTV/AIDS. As a result, the fear that would lead to flight is diminished.

Extraordinary means of treatment or prevention

The second most common response to an epidemic is to employ extraordinary means of treatment or prevention. Extraordinary is defined as outside of the normal response to disease. Collectively, such responses reflect the inability to stop or prevent the epidemic through current Western medical practices. This phenomenon has been observed for several diseases in human history, such as cancer, for which no remedy presents itself. The efficacy of such treatments varies and in some cases they may, in fact, have therapeutic value. For HTV infection, alternative medicines, such as compound Q, are being utilized, despite the lack of evidence of efficacy. Some alternative treatments have the blessing of Western medical authorities, but many treatments are of questionable value. In Uganda, for example, a traditional healer claiming to cure AIDS using soil led many people to travel some distance to obtain some of this soil. Other alternatives, such as prayer or a positive attitude or vitamins to enhance


66 J. W. McGrath

immune function are promoted as AIDS treatments or preventives in the United States. Recently there has been an increase in "mystical approaches" to healing, most prominently represented by Louise Hay and her advocates (Hay 1988). As long as no agreed-upon cure exists alternative treatments will continue to be employed. It is important to note that using such treatments is not necessarily outside the normal repertoire of responses to disease. For example, Kemron, developed in Kenya, purports to cure AIDS with low doses of interferon. While not established as effective against HTV, since interferon is used in cancer treatment it makes sense to experiment with it as a treatment for AIDS as well. More success has been made in the area of prevention. Although government sponsored prevention programs are criticized as too little, too late, many community-based prevention programs have had considerable success (e.g., Rogers 1992). Within the United States gay communities' prevention programs have produced "Dramatic behavior changes . . . the amount and kinds of which probably exceed anything documented in the public health literature" (Stall, Coates, and Hoff 1988), resulting in decreased transmission (Winkelstein et al. 1987). Programs such as the AIDS Support Organization (TASO) in Uganda (Kalibala and Kaleeba 1989) complement government programs, while others, such as underground needle exchange programs, defy government policy (Anderson 1991, Des Jarlais and Stepherson 1991). Internationally, non-governmental organizations (NGOs) and development agencies (such as the U.S. Agency for International Development) sponsor prevention programs promoting a safe blood supply, HIV testing, condom use, and so on. For example, "The Handbook for AIDS Prevention in Africa" is a guide for developing education and prevention programs (Lamptey and Piot 1991). Schopper (1990) notes the difficulty in designing ethically and scientifically sound interventions aimed at sexual behaviors, but MacDonald, Helquist, and Smith (1990) review evidence that education programs worldwide have decreased risk behavior. That prevention programs have succeeded as well as they have despite opposition is testimony to the strength of community-based mobilization.

Assignment of blame The next most common response is scapegoating, which involves blaming an individual, a group or class of individuals, or an institution for the occurrence or continuation of the epidemic. Although the specifics of the model of blame differ, blame is a common theme surrounding AIDS throughout the world (e.g. Farmer 1990 discusses Haiti). Because those who are blamed tend to be those who are already deemed blameworthy within society (Nelkin and Gilman 1988), the process of assessing blame does not necessarily disrupt social function (McGrath 1991). In the United States, groups that have been blamed for HIV/AIDS are those already marginal and devalued (e.g., homosexuals, minorities, prostitutes and IV drug users). Blame, therefore, reinforces social prejudices and does not lead to significant disruption of the social system. If the blame is assigned to a mainstream group or an institution at the heart of social functioning (i.e., the government) this may


Impact of Responses to AIDS 67 have greater potential for disruption. For this reason, blaming the government can have a more serious impact on social functioning than blaming "witches". Patterns of scapegoating also reflect the structure of power relations in a society. Majority groups blame the marginal groups and marginal groups blame the institutions that discount them. In the United States, for example, gay men, IV drug users, and prostitutes are often blamed for AIDS. Gay men, in turn, blame the U.S. government for ignoring AIDS, permitting it to spread further. Minorities blame the government also, claiming that it is deliberately using AIDS to eliminate minorities, analogous to the Tuskegee syphilis experiments where AfricanAmerican patients were intentionally not treated for their disease (Thomas and Quinn 1991, Jones 1981). In one study, 35% of 1056 Black church members in five cities believed that AIDS is a form of genocide while 30% remained unsure (Thomas and Quinn 1991). Intravenous drug users are reported to hold similar attitudes, blaming the U.S. government for delaying prevention programs such as needle exchange because, "They don't want to give out free needles because they want us to die and they see it as a good way to get rid of us" (Anderson 1991:1510). Some even suspect deliberate sabotage, believing that HIV will be put in syringes supplied in needle exchange programs (Des Jarlais and Stepherson 1991). Similar patterns of scapegoating exist outside of the United States. Ugandans, for example, often blame Tanzanians for bringing AIDS in raids across the border during the civil war in the 1980s. Alternatively, Tanzanians are believed to have bewitched Ugandans who cheated them in business. Either way, blaming Tanzanians follows prevalent cultural biases against them. Western countries, the United States in particular, are blamed as well, not only due to high infection rates in the United States, but also in response to theories of an African origin of HIV. These theories are seen as racist (see, for example, Chirimuuta and Chirimuuta 1988; Schoepf 1991). Stories circulate that the United States is using AIDS to eliminate Africans. One story in Uganda, for example, is that imported condoms are infected with the virus (McCombie 1990). Today individuals are considered personally responsible for their own disease to a greater extent than ever before in human history (Rosenberg 1988, Nelkin and Gilman 1988). Lifestyle is believed responsible for a variety of conditions including cancer, heart disease, and sexually transmitted diseases. AIDS also has been individualized to a large extent (Ankrah 1992). Because it is transmitted through intimate, personal behaviors AIDS fits the scheme well. If blame for infection falls on the individual alone, society and its institutions are absolved from any responsibility to act (Turner, Miller, and Moses 1989). Ironically, programs promoting risk reduction through personal responsibility for sexual behavior reinforce this model and may perpetuate "blaming the victim". The personal responsibility model necessarily exempts those not culpable, according to prevailing social prejudices. "Innocent victims," like children, persons infected through blood transfusions, or more recently, contact with an infected health professional, are free of personal responsibility for their infection since they do not engage in the stigmatized risk behaviors. To include such persons "demarginalizes" the others, making it appear that everyone is at risk. If infection rates are high, it is difficult to assign blame to a group of "others." In Kampala, Uganda, for example, where as many as 20% of the population may


68 J. W. McGrath already be infected (Goodgame 1990), it is difficult to blame any particular group or institution; everyone is affected. Blame may be operationalized in two ways: quarantine of those with the disease and ostracism of those with the disease or those considered to be at risk of getting it. Both have been common responses to epidemics throughout history (Musto 1988). Quarantine is beneficial if it interrupts the chain of transmission, but it has a poor record of success (Musto 1988), particularly with sexually transmitted diseases (Brandt 1986). Quarantine for HTV infected persons is rare (e.g., Cuba is reported to have mandatory quarantine for all HIV infected persons [WorldAIDS 1991], although Scheper-Hughes [1991] suggests that Cuban policies are not restrictive of personal liberties. As her impressions are based on a Cuban-sponsored trip, it can be questioned whether they would hold up under further scrutiny). Overall, quarantine is impractical because it is both logistically difficult and expensive. While quarantine may be implemented to stop transmission, ostracism implies a judgement about the person with the disease and is, therefore, closely linked to stigma. Like stigma, ostracism is difficult to measure because it is a subtle social response. Increased levels of anti-homosexual activity, including physical violence, often explicitly linked to AIDS (Nardi and Bolton 1991), indicate ostracism and scapegoating of homosexuals in the United States. McGrath et al. (1991) report that in Uganda persons with AIDS perceive their neighbors to avoid or ostracize them because of the suspicion of AIDS. Ostracism often extends to those considered in danger of infection or even those believed to behave in a "risky" fashion (Nelkin and Gilman 1988). Definitions of "risk" often include overtones about what is "morally correct" behavior and frequently describe immoral behaviors as themselves contagious (Musto 1988). It is instructive to examine the vehement denial of homosexual activity by professional basketball player Earvin "Magic" Johnson when announcing his HTV infection. He emphasized repeatedly that he was infected through heterosexual contact, indicating a dear desire to avoid being labeled as homosexual. In the United States, the perception that a male is homosexual is enough to assign him as "at risk", regardless of the fact that risk depends on specific behaviors, not sexual orientation. Anything perceived to be related to being homosexual also suggests risk. Being a single male, for example, may be suspicious, as are certain occupations (e.g., hairdresser, dancer). As the level of infection in minority populations rises, there is the possibility that AIDS will be seen as a "black" disease, leading to a perceived association of being black and being at risk. Other markers may be used to assign risk. For example, in Uganda persons with AIDS are identified as such based on symptoms, particularly being thin, febrile, or having diarrhea for a sustained period of time (McGrath et al. 1989). Some believe that picking a partner who is "fat" (i.e., not suffering from "slim") is safer. In this case, it is not a feature, such as skin color or suspected sexual orientation, that denotes risk, but a set of AIDS-like symptoms, i.e., wasting. In the United States, association of HIV/AIDS with marginal social groups results in few calls for quarantine since majority groups feel that they are so different from these minorities that precautions are not truly necessary. To the extent that the so-called general population (by which is meant white, middle



class, heterosexual Americans) is unaffected, calls for quarantine will likely be few. However, if it is believed that "hidden" carriers are infecting "innocent victims" then calls for widespread identification of infected persons will increase. This occurred in the case of the Florida dentist who may have infected several patients (Morbidity and Mortality Weekly Report 1991). Kimberly Bergalis, one of the infected patients, proclaimed her "innocence" and supported mandatory testing for health professionals to protect others "like herself." Such proposals seek to identify infected individuals so that their behavior may be controlled. Resignation or Acceptance of Death or Disease

The next most common response is resignation or acceptance of death or disease. In high prevalence areas fatalism may be expected and may increase incidence of infection if attempts to control HIV decline. Of greater concern, however, is social acceptance of the epidemic. Bowser (1991:6) describes the United States as having "settled in" to accept AIDS "as a routine and eventually fatal disease much like serious cases of cancer and heart disease". He contrasts this to denial or indifference by individuals, arguing that settling in is a societal level response that results from the fact that the HIV/AIDS has essentially remained in marginal populations. It is acceptable to let the epidemic run its course in these populations because the stakes are low. There is little cost in AIDS becoming routinized as "just another social problem" and as long as the stakes remain low, this response will not be seen as a threat to public health. Social acceptance of disease and death may also affect prevention programs. If the costs of letting AIDS remain unattended are low and the cost of prevention is high, funds may be diverted from prevention.

Intragroup conflict

The final category of response is intragroup conflict. Although infrequently reported in the ethnographic record, previous epidemics likely led to conflict over how to respond. Shilts (1987), Airman (1986,1988), Panem (1988), Anderson (1991), Lang (1989) and others review political conflicts over AIDS policy in the United States. In some countries, the establishment of a National AIDS Commission or Program serves as the focus of AIDS policy, thus diffusing the potentially disruptive political effects of AIDS. This permits the development of policy within an existing structure, and to some extent, deflects the conflict from other institutions. Political fights may hamper education and prevention programs, stalling efforts to decrease incidence. Church and state conflicts over, for example, sexual education, promotion of condom use, and distribution of clean needles for drug use, may restrict availability of these primary preventions. Political leaders have been forced to take stands on condoms, needle exchanges, and other risk reduction strategies (Anderson 1991, Des Jarlais and Stepherson 1991). The remarkable rancor of the debate results from the cultural meaning and importance of the rules governing the behaviors that transmit HIV. Because of these political debates much of the successful work in prevention


70 }. W. McGrath

comes from community groups and NGOs rather than governments. For example, while the President of Uganda feels compelled to express doubts about condom promotions as the solution to AIDS (Museveni 1992), community organizations, such as the Federation of Uganda Employers, actively promote condoms as part of their AIDS prevention program (McCombie, Bukombi, and Rwakagiri 1991). One reason HIV/AIDS became a focus of political in-fighting in the United States is because it first struck a group of gay men with a high level of political awareness and sophistication. (For a discussion of the politics of the AIDS epidemic in the gay community in the early days of AIDS see Shilts [1987] and Altaian [1988].) This group used political means to draw attention to the AIDS epidemic, and succeeded in getting, among other things, changes in Federal Drug Administration procedures for drug approval and Congressional hearings on AIDS (Altaian 1988). Political mobilization around AIDS in some gay communities resulted in what Altaian (1988:303) describes, in reference to San Francisco, as "a partnership between government and community-based organizations" with respect to the use of resources to fight AIDS. The political sophistication of the gay community prior to the appearance of AIDS played a key role in this outcome. This partnership did not develop at the Federal level. It is safe to say that if AIDS had begun in poor minority communities it would never have received the attention that it has in both medical and political arenas. If HIV/AIDS continues to be concentrated in marginal populations, it is likely that political fights will diminish as those with political power become less interested in issues related to AIDS. This is part of the process of "settling in" referred to by Bowser (1991). In the United States another common response to HTV7AIDS has been to legislate control of infected individuals as a way to decrease risk of infection, a response with a long history (see, for example, Brandt 1986, Musto 1988). Mandatory testing for HTV* antibodies among health care workers has been proposed, for example, to identify infected individuals and then control their behavior through legislation, despite the fact that the risk of becoming infected through contact with a health care worker is very small (estimates range from 1 per 420 surgical procedures to 1 per 1,000,000 procedures) (Morbidity and Mortality Weekly Report 1991, Chamberland and Bell 1992). Legislation creates boundaries between individuals perceived to be contaminated and those who are not (us vs. them). In this case, the concept of "contamination" extends beyond the infectious agent itself to the lifestyle of the infected persons. Therefore, boundaries are created between gay men and heterosexuals, between intravenous drug users and drug nonusers, etc. By criminalizing AIDS these boundaries achieve the force of law, with accompanying moral overtones, and thereby legitimizes the separation of groups perceived to be at risk from the mainstream population.

Research as response

One response to AIDS that has not been characteristic of responses to past epidemics is research. Today in developed countries we might include research under familiar responses to disease. Millions of dollars have been spent in the


Impact of Responses to AIDS 71 United States alone for AIDS research. Despite critics' claims' to the contrary (e.g., Shilts 1987), the worldwide scientific community responded relatively quickly and began massive efforts that continue today (Rogers 1992), creating what many refer to as an 'AIDS industry". Gay AIDS activists in the United States cite a lack of effort compared to the effort made to investigate Legionnaire's disease. The fact remains, however, that a significant expenditure of public funds in the United States has been devoted to AIDS research. This is remarkable considering the stigma, ostracism, and marginalization of persons with AIDS that has occurred. Gay activists argue that serious efforts only began when the general population felt threatened, a charge that has some merit. Activists also accuse researchers of profiting from the epidemic, without considering whether, profit or not, the research benefits society (see also Altman 1988 for a discussion of the "professionalizaton" of gay leaders as an offshoot of the AIDS industry). Motives aside, in the United States the level of research response to AIDS stands in sharp contrast to policy development which has lagged far behind (Rogers 1992). The repertoire of social responses to AIDS differs from those reported for earlier epidemics for two reasons. First, as noted above, the ethnographic record is not an unbiased record and the frequency with which particular responses are reported does not necessarily indicate the importance of each response. Secondly, the HIV/ AIDS epidemic is epidemiologically different from many of the epidemics that appear in the ethnographic record. Scholars draw analogies between AIDS and several other epidemics, including syphilis (Brandt 1988), polio (Risse 1988), and the plague (Risse 1988, Slack 1988). Although it does not exactly resemble any of these, responses to AIDS are clearly not unique in human history.

THE BIOLOGICAL APPROPRIATENESS OF SOCIAL RESPONSES TO AIDS

The primary responses to AIDS are scapegoating, resulting in ostracism, stigma, and blame; and to a lesser extent, resignation, use of alternative therapies, political mobilization, and research. To be biologically appropriate a behavioral response to AIDS must meet one of the four conditions for decreasing transmission. Figure 1 presents a flowchart to examine whether a response meets any of these conditions. If we classify the responses into five categories: blame, acceptance, extraordinary treatments, social group conflict, and research we can use Figure 1 to evaluate biological appropriateness for each category. Assigning blame creates boundaries between those considered responsible for the disease (which may be the individual with the disease) and those not responsible for the disease (whether infected or not). In theory, a system of blame would meet condition 2 by eliminating adequate contact between susceptible and infectious individuals through ostracism and avoidance of those infected or at risk of infection. With HTV infection, however, this does not succeed because the criteria upon which ostracism is based do not reflect the real risk of infection. In the United States, for example, perceived risk of HTV infection is assigned based on purported sexual orientation, (and perhaps, increasingly, race or socioeconomic status), which may have little to do with actual risk. In general, it is not possible to identify, by casual observation, who is either infected or at risk of infection. Therefore,

72 J. W. McGrath


RESPONSE

CONDITION 1: ELIMINATE SOURCE OF INFECTION YES NO

CONDITION 2: ELIMINATE CONTACT WITH SOURCE

YES

NO

CONDITION 3: DECREASE INFECnVITY

YES

CONDITION 4: DECREASE SUSCEPTIBILITY

NO

YES

UNMET

MET

NO

r* MET

UNMET

MET

UNMET

MET

UNMET

Figure 1. Criteria for evaluation of the biological appropriateness of social responses to epidemics (adapted from McGrath 1991).

based on the prevailing model of blame, ostracism does not separate infected persons from susceptible persons, and does not meet Condition 2 for biological appropriateness. It might be argued that the inability to identify infected persons justifies mandatory HIV testing. Most public health officials reject mandatory testing for many reasons (Koop 1986, Airman 1988), including the issue of stigma. As Kimberly Bergalis expressed: there are "good" and "bad" victims of AIDS. The stigma of AIDS removes compassion for the afflicted and inhibits many from associating with the "guilty" group (Turner, Miller, and Moses 1989). Public health officials fear that the medical benefits of identifying cases will, therefore, be outweighed by reduced access to individuals truly at risk. Mandatory testing also raises the question of what to do with infected persons once identified. Proposed legislation requiring tests for health care officials called for patient notification and cessation of certain medical practices if infected, with jail the penalty for not complying. Full discussion of the implications of such proposals is beyond the scope of this paper. A key question, however, is how such actions affect disease incidence. Mandatory tests are not likely to identify many cases either because people avoid the test (as when couples left Illinois rather than take a mandatory premarital test [Nichols 1989]) or, more significantly, because testing programs are based on group identity (e.g., health care worker), rather than actual risk. Stigma or blame has far-reaching consequences, because "to blame the victim is to absolve social institutions of their responsibilities" (Turner, Miller, and Moses 1989:392). Blame maintains social group function by shifting responsibility from


Impact of Responses to AIDS 73 institutions to individuals, thus relieving institutions from responsibility to alleviate the epidemic and adopting the attitude that the epidemic would cease if people behaved "properly." The consequence is that blame may lead to continued high incidence, as those who are really infected do not come forward, are not identified, and therefore continue to transmit the virus. Conditions 1,3,4 are not relevant with respect to blame. That is, blame does not contribute to the elimination of the source of infection or decrease infectivity or susceptibility. The second category of response, acceptance of and resignation to HIV/AIDS, is reported in some contexts. This response cannot meet any of the conditions presented in Figure 1, as it is a passive response that essentially lets the epidemic run its course. However, if people reject protective behavior because they see no point to it then incidence may increase. Once infected, resignation to one's fate may diminish attempts to prevent infecting others. Acceptance of HIV/AIDS as "just another social problem", Bowser (1991), diffuses resources from AIDS education and prevention programs. While there is value in addressing other social problems coexisting with AIDS, accepting AIDS as part of the experience of being poor or a minority will lead to continued high rates of HIV infection in these populations. The only category of response that could meet either condition 3 or 4 is the use of extraordinary means of preventing or treating HIV/AIDS. The primary means to decrease the infectivity of a pathogen is through treatments that make the agent less infectious or decreases the period of infectivity. No such treatment has yet been identified3. It is possible that the use of extraordinary or alternative therapeutic or preventive measures may achieve this, but there are currently no likely candidates. Similarly, treatments could be developed that decrease susceptibility (the goal of vaccine research). Some factors appear to increase susceptibility to HTV, such as the presence of genital sores from other sexually transmitted diseases. Other than eliminating or preventing sexually transmitted diseases, however, there is no known way to decrease susceptibility to HIV infection. Alternative treatments have not measurably reduced the spread of the infection thus far, but if treatments are perceived to reduce infectiousness, or even to cure AIDS, this may encourage unsafe sexual behavior. These treatments may or may not be harmful to the patient directly, while having little impact on population incidence. Considering the many education and prevention programs initiated in the gay community, primarily in response to the perceived unresponsiveness of public health authorities, it is dear that political mobilization has been enormously successful in reducing risk behavior and HIV transmission (for a review of studies of risk behavior change in gay men see Stall, Coates, and Hoff 1988). Whether these changes will be maintained over time is of concern (Adib et al. 1991, Stall et al. 1990). In Figure 1, political mobilization has worked primarily by meeting conditions 2 and 4. That is, by successfully promoting safer sex practices the contact between infectious and susceptible persons is decreased (condition 2) and the susceptibility of the person practicing safer sex is decreased (condition 4). Research aims to uncover means to meet all four conditions. Medical research focuses on conditions 3 and 4, finding treatments and cures. Epidemiologists and public health officials focus on condition 2, eliminating contact. Behavioral research focuses on understanding cultural and behavioral factors influencing the

74 J. W. McGrath use of treatments and cures, and the adoption of risk reduction practices. Because research has told us about HTV and how to prevent it, it has been biologically appropriate.


Subgroup Differences in Responses to Disease

This discussion has focused on response to AIDS by social groups at a macrolevel. This sweeping approach may mask differences between population subgroups in responses, that may have biological consequences in terms of continuing the epidemic. Because HIV/AIDS has different prevalence rates in different population subgroups it is expected that subgroup differences in responses to the epidemic do exist. Specifically, ethnic, cultural, and class differences potentially play an important role in shaping how population subgroups respond to AIDS and affect the biological impact of these responses. No systematic study of cultural, ethnic, or class variables influencing patterns of response in this sense has yet been undertaken, although some have examined the impact of class on access to health services (e.g., Niehaus 1990). Anthropology has a critical role in identifying ethnic, cultural, and class-related factors shaping different responses to HTV7AIDS. The response of the American gay community to AIDS, as discussed above, was shaped by the experience of being gay in American society in the 1970s and 1980s. That experience included political activism in response to discrimination against homosexuals, which was then translated into activism around AIDS. The response of minority communities, however, has been shaped by a different history of political repression and discrimination. Black Americans, for example, respond to this epidemic, as described above, as another form of genocide of peoples of color. The frightening prospect of another "experiment" on black people, as was performed with syphilis, makes blacks skeptical of medical and public health authorities' attempts to promote behavior change in the black community. Similarly, the position of African countries in the world order shapes African responses to the epidemic. Denying the presence of AIDS has been used to avoid economic hardships expected to follow from admission of the presence of AIDS. Discussion of Africa as a possible "origin" of HIV is interpreted as an attempt of the West to blame Africa for AIDS and has created a gulf between Western and African nations (Panos 1988; Chirimuuta and Chirimuuta 1988; Schoepf 1991). The history of political and economic dominance by the West over Africa has contributed to the perception that AIDS is a form of Western sabotage (McCombie 1990). Others report that AIDS is not thought to be a real phenomenon. For example, in Zaire the French acronym for AIDS, SIDA, is said to mean "Syndrome imaginaire pour decourager les amoureux" (the "imaginary syndrome to discourage love") (Schoepf 1991). Concern that African populations will serve as "laboratories" for drug and vaccine trials (Schoepf 1991) and that some Western researchers are engaging in inappropriate research, including exporting data that will be used only to benefit Western populations (Serwadda and Katongole-Mbidde 1990), has led to caution in permitting Western-funded research projects. It is clear, therefore, that many important cultural and historical factors affect



both risk of HIV infection and reactions to AIDS. Worth (1990), for example, describes how Latina women respond to AIDS based on cultural values related to sexuality and how black women respond to AIDS in regard to the "shortage" of black men available in their communities. In addition to ethnic and cultural factors, socioeconomic class undoubtedly plays a role in subgroup differences in responses to the epidemic. As HTV becomes a disease of poor people, the way in which wealthier classes respond becomes critical in assessing the biological appropriateness of social group responses. If, as Bowser fears, the epidemic becomes an accepted part of being poor then class differences will likely contribute to a biologically inappropriate response. CONCLUSIONS

Macrolevel social group responses to HTV/AIDS are not always biologically appropriate, in the sense of mitigating the impact of the epidemic through decreasing transmission. The exception to this appears to be the political mobilization of the American gay community that resulted in behavior change in those communities. The fact that behavioral responses do not always decrease the biological impact of a disease is not unexpected, if it is recognized that humans do not necessarily know how to read biological information and respond accordingly. Failure of responses to HIV/AIDS to mitigate the impact of the epidemic is neither surprising nor particularly interesting. The question of greater interest, however, is whether these responses operate in a positive feedback system in which the social responses to HIV/AIDS actually contribute to an increased biological impact of the epidemic. If the biological impact of HTV is measured through incidence, then the relevant question is whether responses to HTV/AIDS might increase transmission. The above discussion indicates that assignment of blame, with its accompanying responses, including legislation to control behavior, may contribute to continued spread of H3V. Conversely, prevention programs and research initiatives have increased public awareness and knowledge, which are the basis of successful control programs. These programs have not halted the epidemic because of conflict over them and the seriousness of the epidemic. There may be some basis, then, for arguing that social responses to AIDS have not succeeded in stopping the HIV epidemic and that they may contribute to its continuation. This postulate is untested at the present time. Empirical field studies are needed to test the proposition that reactions, such as scapegoating, alter responses to HTV/AIDS and affect the course of the epidemic. It is also recognized that responses to epidemics change over time. An empirical test of this model must be grounded in ethnography as well as epidemiology, as specific hypotheses about the impact of various responses can only be generated from such a consideration. As argued earlier (McGrath 1991), this model permits evaluation of the impact of responses across a variety of contexts. HTV/AIDS has affected all aspects of health and health care in numerous ways in a variety of contexts around the world; it is common to hear that AIDS has changed us forever. Similar statements were probably made in earlier epidemics as well, and indeed many would argue that epidemics such as the plague in 14th century


76 J. W. McGrath

Europe did alter human history in countless and permanent ways. But as society responds to the AIDS crisis we must examine behavior in a bio-behavioral framework. While human behavior is one reason for our success as a species, this does not mean that all behavior serves biological requirements equally well. Human behavior must respond to cultural constraints having little to do with biological factors. Stigma, ostracism, and the behaviors that result from these must, therefore, be evaluated in terms of their effect on the course of the epidemic. I argue that such behaviors may not diminish the extent of the epidemic, and therefore may not be biologically appropriate. As the epidemic continues, further investigation of the biological appropriateness of social group and subgroup responses is necessary. ACKNOWLEDGMENTS This paper was presented, in part, at the American Anthropological Association Meetings, November 1991, in a session "Social Impacts of AIDS: Current Perspectives" organized by Douglas A. Feldman, Ph.D. I thank Dr. Feldman for inviting me to participate and the discussants; Dr. Susan Scrimshaw and Dr. Norris Lang, and the other participants who provided helpful comments on this paper. Dr. Ralph Bolton also provided invaluable advice and comments. I also thank the Editor and four anonymous reviewers for their helpful comments.

NOTES 1. If all else is equal refers to the fact that the epidemic may cease for other reasons, most notably, the depletion of susceptible individuals. 2. This model is similar to Kleinman's (1980) "hierarchy of resort" in which family-based choices in health care proceed through a sequence of treatment options, the determinants of which vary with the cultural context. Slobodkin and Rapoport (1974) and McGrath (1991) express this process in terms of energetic costs (Slobodkin and Rapoport) and social costs (McGrath) to the social group. Therefore, while Kleinman's model addresses individual and family health decisions (see also Young 1981), the present discussion focuses on macrolevel group processes. 3. Anderson, Gupta, and May (1991) suggest that widespread use of ACT may contribute to the rate of HIV infection by lengthening the life of HIV infected persons without also reducing the degree of infectivity. In other words, in the absence of behavioral change, HIV infected persons will remain healthy longer, therefore, able to infect more persons.

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