Ensnared by AIDS. David K. Beine
issues related to (1) motivation. “Those who haven’t yet experienced the symptoms may be less motivated and disciplined in treating the disease”; (2) stigma, which inhibits some from seeking treatment; (3) money. Because of cutbacks, some who began receiving treatment free under PEPFAR have now lost, or will soon lose free access as noted previously; (4) adherence. Non-adherence can create future drug resistance, which could be disastrous; and (5) mistrust. Testing and treatment depend upon the acceptance of science and scientists, and many individuals in developing countries do not trust either.
Many of these same concerns are relevant to the Nepali context as well. And there are certainly many other structural issues still inhibiting ART delivery in Nepal (even though it is, for now, still free). These will be elaborated on in the next chapter. So while the amazing development of ART as treatment and prevention is obviously very substantial in the global fight against HIV and AIDS, it may not be the panacea that some have made it out to be. Given the new emerging data, coupled with the limitations noted above, it would seem prudent (and responsible) for HIV researchers and the media to curb their excitement and communicate publically that, in light of the new studies and the remaining identified barriers, our approach to HIV prevention needs to remain “both/and” (i.e., treatment as prevention and behavioral change), not “either/or.”
Fortunately, there seems to be an emerging understanding concerning the limitations of any future total dependence upon treatment as prevention.35 The CDC (2013) concludes, “treatment by itself is not going to solve the global HIV epidemic” but that “controlling and ultimately ending the epidemic will require a combination of scientifically proven HIV prevention tools.” And in a recent review of its current PEPFAR plan, the Institute of Medicine (IOM) concluded the following:
To contribute to the sustainable management of the HIV epidemic in partner countries, PEPFAR should support a stronger emphasis on prevention. The prevention response should prioritize the reduction of sexual transmission, which is the primary driver of most HIV infections, while maintaining support for interventions targeted at other modes of transmission. (IOM 2013:723)
It would seem that another pendulum shift may be close at hand. It is critical to once again reassert the importance of prevention in the overall equation in order to eliminate HIV and AIDS. Such a shift would be an important and necessary correction on the part of policy planners.
2.1.2.4 A “functional” cure?
The first hope 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