of a cure for HIV came in an anomalous case when an HIV-infected man living in Berlin was being treated for acute leukemia, which he had developed subsequent to his HIV infection. He was given a bone marrow transplant from a donor whose cells were genetically resistant to HIV. Following the procedure, he stopped his HIV drugs and ART treatments and his HIV remained undetectable in his body (NPR 2012) (Salter 2012).
In a second case, an HIV-positive baby born in Mississippi was treated aggressively with ARVs just after birth. Even after the cessation of ARVs there was no remaining trace of HIV in the baby’s body (Pollack and McNeil 2013a). This is thus the second documented “cure.”
In a third recent case, French doctors reported fourteen HIV-positive patients whose bodies seemed to be controlling their HIV without further medication (Pollack and McNeil 2013b). Like the Mississippi baby, they had been aggressively treated with ARV medications soon after their infection. Unlike the baby, they still had traces of HIV but their own immune systems seemed to be keeping the virus at a near-undetectable level. The researchers consider these patients “post-treatment HIV controllers” in “long-term remission,” and “functionally cured.”
The indications of the French patients may be that early aggressive ART may be effective at preventing the HIV virus from creating a reservoir of HIV-infected cells, thus giving the patient’s own body the chance to control the virus naturally. This form of cure is sometimes termed a “functional cure” because the body’s own defenses seem to control the virus even after the suspension of medication. A month later, AmfAR published an article in which a further distinction was made (Johnston 2013). A “sterilization cure” is considered such because it eliminates all traces of the virus from the body rather than merely controlling the virus. According to Johnson (2013), the man known as the “Berlin patient” and the baby “may be as close to a sterilizing cure as we will ever come.” Johnston states, however, that there is still much that is not well understood about these cases, and it must be noted further that they are confined to the West.36 It seems likely that due to the various limitations noted above, cures for “the rest” are probably a long way off.
The discovery and success of new AIDS treatments, treatments as prevention, and possible functional cures, also have implications in that they have changed and will further change the face of AIDS. A key element in the social meaning attributed to AIDS (a product of a shared cultural model) in the early years was the infectious and fatal nature of the disease (i.e., AIDS as a death sentence). With the advent of new treatments and the widespread use of these combination-drug therapies, however, the cultural model of AIDS then shifted to being understood as a manageable chronic disease, much like diabetes (the idea of “living with AIDS”). And with a potential cure in sight (i.e., a functional or sterilization cure), the cultural model of HIV and AIDS is likely to shift again—at least in the geopolitical areas where functional cures are available. This will be discussed further in the next section.
2.2 AIDS as social construction
As discussed above, AIDS is a biomedical reality, but it is also a reality as a social construction. As Fee and Fox (1992:9) claim, “AIDS is a particularly good example of the social construction of disease.” Further building on this hypothesis, they contend that AIDS, the syndrome associated with the HIV virus, is more of a social construction than a biomedical reality (Fox and Fee 1992:10). Various other authors, making this same claim to varying degrees, also allude to this social side of AIDS. Schoepf, for instance, commenting on her research in Zaire, states that “AIDS may be usefully viewed as socially produced” (1992:260). Farmer (1992:xi) contends that “the world pandemic of AIDS and social responses to it have been patterned by social arrangements.” Herdt (Herdt and Lindenbaum 1992:3) claims that “culture shapes our response to the disease.” And Susan Sontag (1988) demonstrates that people used familiar metaphors to make meaning of AIDS when it first emerged.
Medical anthropology has recognized that cultural models of health and illness are strongly influenced and shaped by cultural factors. AIDS is no exception. It has been said of the Western medical model that a patient comes to the doctor’s office with an illness but departs with a disease (Treichler 1992:75). Thus, illness is “the culturally defined feelings and perceptions of physical and mental ailments and disability in the minds of people in specific communities,” while disease is recognized as the “formally taught definition of physical and mental pathology from the point of view of the medical profession” (Pelto and Pelto 1996:302). It seems that both the illness of AIDS and the disease of AIDS (as defined above), at least in part, are culturally informed.
As alluded to previously, however, one must make a distinction between illness and disease as pure cultural construction (i.e., no “truth” behind the biomedical model) and illness and disease as a product of the interaction between natural law and culture. John Gagnon (1992:33) makes a useful distinction between “epistemological doubters” and “methodological doubters” when it comes to the evaluation of science, whether hard or soft. The former (the epistemological doubters) argue that researchers do not discover facts; rather they participate in their production and reproduction. He characterizes this as the position of Foucault and others who express an extreme postmodern position of social constructionism. For those in this camp, scientific “facts” are purely the product of social construction. The latter (the methodological doubters) recognize the limitations of theory, the imperfection of techniques and the often error-laden nature of data, but also recognize that there is, indeed, an underlying natural order in the universe that scientific tools can help at least approximate.
Methodological doubters, of which I am one, recognize the role of culture in shaping our perceptions but hold that through refinement of theories, improvement of techniques, limitation of bias and reduction of data error, we, in our human effort called “science,” may at least approximate some of the true parameters of nature. For epistemological doubters no such thing as objective truth even exists. For methodological doubters, the discovery of approximate objective truth, while embedded in human culture, is at least attemptable.
There is also a danger, however, in minimizing the role of culture in the production of scientific fact. Farmer (1992), for instance, demonstrates that the construction of the biomedical model of AIDS in America in the early years of the epidemic was strongly influenced as much by the North American folk model of Haitians (which posited certain Haitian voodoo practices as the cause of AIDS) as it was by biomedical science.37 One must strive for reason in the balance between these two positions.
Whether or not one stands in the first camp (of epistemological doubters), or, as I do, the second (of methodological doubters), both groups acknowledge that culture shapes our perceptions of illness and disease. This is true of AIDS as well.
2.2.1 Various cultural models of AIDS
There are various socially constructed cultural models of AIDS around the world.38 Paul Farmer (1994), for instance, traces the development of a cultural model of AIDS in Haiti. Farmer’s research illustrates a widely shared representation of the new disorder that has developed over time. To the Haitian, AIDS (known as SIDA in Haiti) is conceptually understood as (1) a new disease; (2) strongly associated with skin infections, “drying up,” tuberculosis, and diarrhea; (3) can be caused “naturally” (via sex) or “unnaturally” (“sent” to another through a kind of witchcraft); (4) caused by a microbe; (5) transmitted by contact with “dirty blood;” and (6) is viewed as a product of a larger problem of North American imperialism, lack of class solidarity among the poor, and corruption among the ruling elite (Farmer 1994:805–806).
Although not explicitly identified as a cultural model of AIDS, various widely shared conceptions about AIDS have existed in America since the inception of the disease. Using several recent histories about AIDS, a cultural model can be posited which developed during the early years of the epidemic here in America. As mentioned previously, the first component of this cultural model was that AIDS was a “gay disease” (American Foundation for AIDS Research 1999:376; Flynn and Lound 1995:11; Giblin 1995:197). This
