Others, too, may receive benefi ts from providing care and the social prestige and material rewards it can provide, such as was provided by the care of leprosy. The sick role may enable individuals to manipulate others through obligations imposed on them by the sick role: for example, guilting the public into paying for unnecessary asylums and indi- rectly to support the Catholic Church. The sick role may serve religious ends in cultures where illness is seen as a consequence of wrongdoing and may serve as a punishment by which guilt is expiated and social consequences atoned. Suffering from illness as pay- ment for past misdeeds may evoke forgiveness from others.
cancers and pneumonia. HIV is present in people in whom the immune system remains intact and, consequently, there are no symptoms of infection. HIV also has a long latency period, the time between infection and manifestation of symptoms. HIV can be viewed as the cause of AIDS, but differential distribution of HIV and AIDS among ethnic popula- tions illustrates the fundamental importance of sociocultural factors. The disproportionate occurrence of new HIV cases among U.S. ethnic minorities refl ects the infl uences of pov- erty on access to preventive, educational, and treatment services. Because there is no cure for HIV infection, the only effective response is changing behaviors that contribute to dis- ease transmission. Because the highest incidence is among ethnic populations and isolated social groups (intravenous drug users and sex workers), knowledge of cultural factors involved in these groups’ risk behaviors is essential to prevention.
AIDS as Sickness
Experiences of AIDS patients and HIV-positive individuals include consequences of the social perceptions of these conditions. Sickness dimensions of AIDS result from ways that institutions (political, research, and medical) respond to AIDS patients. An association of HIV with socially stigmatized groups has contributed to blaming HIV infection on the victims and their lifestyles, increasing personal suffering. Social responses to AIDS also impact disease-free members of high-risk populations, justifying discrimination against these groups (such as Haitians) in public policy. Family members who do not have HIV but experience sickness and suffering from the associated stigma may share the socially induced suffering.
AIDS as Illness
Cultural attitudes play a signifi cant role in shaping illness experiences of those with HIV and AIDS diagnoses; consequently, appropriate care requires addressing institutional responses and the interpersonal and psychosocial dynamics of discrimination. Signifi cant aspects of the illness experience come from cultural stigmatization and neglect that com- pound suffering. A patient’s experience of HIV and AIDS is affected by the fear others have of the patient, and homophobia, a negative societal attitude toward gay behavior, may induce shame or guilt.
Political and Economic Aspects of AIDS Treatment
The face of AIDS today has been changing and expanding. Its early association in the United States with those with gay and drug-user lifestyles has changed. Now it is minor- ity women and youth of all ethnic backgrounds who are at greatest risk. The early associ- ation of AIDS with Haiti is now replaced with the estimated bulk of documented cases in sub-Saharan Africa.
The treatment of AIDS has become a political and economic issue, rather than strictly a medical issue. The “AIDS cocktails” used by patients with HIV are sold by pharmaceutical companies at very high prices, with some doses running into hundreds of dollars a day. The
“cocktails” of antiretroviral drugs can suppress HIV and other side effects, but millions of
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Anthropological Approaches to AIDS Prevention
Anthropology has played an important role in AIDS prevention research (see Singer, 1992; Bowser, Quimby, and Singer, 2007). The social dynamics of AIDS transmission and its social evaluation illustrate why it must be addressed not only as a disease but also as sickness and illness. Cultural perspectives are essential for addressing the spread of HIV infection because, without a cure, the only effective response is prevention, which requires changes in people’s behavior. Cultural per- spectives are necessary for determining
Factors predisposing high-risk populations Risk behaviors in the general population
Relatively secretive and hidden aspects of high-risk behaviors Social responses affecting the perception of AIDS
Medical, political, and economic policies that affect AIDS research and treatment
Behavioral and community-based efforts are necessary to assist populations in avoiding expo- sure, based on knowledge regarding the immediate contextual infl uences on risk behavior. High rates of HIV/AIDS in minority populations in part refl ect failures of prevention programs to provide culturally appropriate interventions. What leads people to engage in behaviors that expose them to HIV? When is exposure most likely to occur? The ability to change relevant behaviors is compli- cated by the primary mode of transmission—sex—that constitutes a tabooed area in all cultures.
The need to alter sexual behaviors not ordinarily discussed makes it of utmost importance to understand the social and cultural factors affecting risk-related behaviors. Cultural approaches provide understandings of the context and motivation of high-risk behaviors that must be addressed for effective risk-reduction programs.
Because risk behaviors contributing to transmission are generally private or stigmatized forms of conduct, ethnography and participant observation , observations that take place in the normal context of these activities, are necessary to identify relevant behaviors and contexts. The specifi c cul- tural contexts within which high-risk behaviors occur need to be understood to change those behav- iors. Immersion in the context of high-risk behaviors provides data not available through structured surveys, which often produce socially appropriate responses rather than actual behaviors. Also of rel- evance are sexual values, interpersonal dynamics, and social interaction patterns that contribute to what are often spontaneous, rather than deliberate, behaviors. People may intend to engage in appropriate risk-reduction behaviors (e.g., using a condom) but instead engage in contextually moti- vated high-risk behaviors (e.g., from peer pressure). These behaviors can best be identifi ed through the participant observation approach. Formal surveys cannot inquire about relevant behaviors unless these contextually manifested activities are previously identifi ed through participant observation.
Assessments of changes in high-risk behaviors among communities receiving AIDS prevention programs show that education alone is not suffi cient to eradicate high-risk behaviors. Cultural approaches are necessary to identify factors that inhibit the adoption of safe-sex techniques and contribute to the continuation of unsafe sexual practices. Because behavior is typically reinforced in
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APPLICATIONS
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social networks and interpersonal contact, knowledge of the norms, beliefs, and infl uences within a community is essential for understanding how to prevent the spread of HIV.
Anthropologists have also made contributions to the study of AIDS in directing attention to the specifi c issues involved in various ethnic and cultural groups. Cultural aspects of AIDS prevention programs are illustrated in Singer’s (1992) approach to the AIDS epidemic in U.S. ethnic minorities.
He shows that anthropologically informed research is necessary for project design, implementation of project structure and content, and evaluation of project effectiveness. Anthropological methods are particularly effective in acquiring in-depth understandings that provide a basis for culturally sen- sitive approaches. Implementing culturally sensitive approaches also requires community liaison skills, producing partnerships among community and health care organizations by engaging com- munity participation. Culturally sensitive, socially relevant, and locally grounded information needs to be obtained before program development. Ideal methods for obtaining these data include the anthropological methods of participant observation, informal and unstructured interviews, and focus groups made up of relevant participants (e.g., sex workers or injection drug users). These methods accommodate to natural social environments in ways that facilitate disclosure, allow group dynamics to contribute insights, and express variability within the target group.
Interventions with culturally sensitive content produce far higher levels of program participa- tion. Culturally relevant interventions require culturally appropriate project structures (e.g., location, context, scheduling). Cultural sensitivity includes accessibility, culturally appropriate groupings (e.g., single sex), scheduling, appropriate language or idiomatic formats, and other cultural aspects affecting interpersonal relations and disclosure. Anthropological approaches have been effective in ascertaining the resistance to safe-sex practices found in the cultural dynamics of specifi c groups.
Community collaboration helps ensure the appropriate management of issues such as gender roles, community differentiation, interpersonal and social dynamics, and other local conditions affecting participation. This requires that interventions be tailored for each population based on the risk behaviors and social factors affecting each specifi c subculture (e.g., women versus men, ethnic differences, generational differences). Natural social networks provide invaluable assistance in the diffusion of AIDS prevention programs, helping to ensure that educational messages are provided in linguistically, culturally, and socially appropriate formats. These networks also provide the peer support necessary to produce community-level behavioral change necessary for AIDS prevention.
Prevention programs should use peer educators and culturally knowledgeable consultants as role models. Anthropology has also made contributions to AIDS care in areas of understanding sickness, the stigma produced by the HIV/AIDS diagnosis.
Waterston (1997) argues that the popular prevention theories based on educational interven- tions and behavioral change, while helpful in reducing the spread of HIV, are inadequate because they focus attention on the individual, obscuring the social and economic factors that contribute to HIV infection. Waterston explores an anthropologically informed alternative based on principles of social responsibility and advocacy for social justice through humane social programs, principles engaged by critical and political economy approaches discussed in Chapter Eight.
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AIDS patients around the world cannot afford these drugs. Who has precedence, the share- holders of these multinational corporations or the millions of impoverished AIDS patients whose only hope of longer survival depends on these medications, which their own countries could produce cheaply? Here we see how political-economic priorities—capitalism or socialism and nationalism—affect decisions about what is fair treatment of disease.
Third-world countries are resisting these exorbitant prices and threatening to pro- duce their own generic versions of these drugs. For instance, Brazil has attempted to get the Swiss pharmaceutical giant Roche to reduce the prices or allow the government to manufacture the anti-AIDS drug nelfi navir. Some countries have attempted to produce these drugs themselves but fi nd their efforts blocked by the legal actions of the pharma- ceutical companies, which want to assert exclusive rights to these medicines. Brazilian law allows the government to produce the drug in the case of national emergency and when the companies engage in an abuse of their economic situation. Having decided that the law applied to the case of the AIDS cocktails, Brazil obtained the support of the World Trade Organization in its legal struggle to break the patent of American pharma- ceutical companies and to produce low-cost generic versions of other AIDS treatments.
Negotiated settlements allow the Brazilian state company Far-Manguinhos to produce brand-name AIDS drugs, dramatically reducing costs while still paying the pharmaceutical companies royalties for their patent rights. Here national rights to access to medications are taking precedence over the unbridled economic rights of companies. This strategy has also compelled some drug manufacturers to reduce their prices rather than face the pros- pect of the national laboratories producing generic versions.
There are signifi cant social and cultural dimensions to AIDS, particularly the behaviors that contribute to transmission and the social responses that produce sickness and illness.
Because biomedicine does not have a cure for AIDS, the primary means of addressing the spread of HIV infection is through changing the behaviors that lead to exposure and the social conditions that increase the possibility of infection. Consequently, anthropology has played a signifi cant role in addressing the AIDS epidemic (see the special feature “Applica- tions: Anthropological Approaches to AIDS Prevention”).