Book Review

AIDS — Politics, Policies, and Patients

AIDS in the Industrialized Democracies: Passions, Politics, and Policies

N Engl J Med 1993; 328:448-449February 11, 1993

Article

AIDS in the Industrialized Democracies: Passions, Politics, and Policies
Edited by David L. Kirp and Ronald Bayer. 393 pp. New Brunswick, N.J., Rutgers University Press, 1992. $45 (cloth); $16 (paper). ISBN: 0-1835-1822-9

This series of essays, appearing at the beginning of the second decade of the AIDS epidemic, provides vivid details of how grass-roots efforts and governmental agencies in 11 industrialized nations have responded to many of the challenges posed by AIDS. The editors asked writers from each nation to describe its responses to major policy issues. They used an interesting framework to characterize these responses as following either a “contain-and-control strategy,” which seeks to use compulsory means to identify those infected and isolate them to contain the spread of HIV, or a “cooperation-and-inclusion strategy.” The latter fosters control of the epidemic through a combination of public-education efforts, developed with representatives of the communities at greatest risk, and voluntary testing programs, with a focus on the protection of privacy and the rights of the people being tested.

Remarkable similarities emerge in the responses from around the globe. Common threads include support for the principle of informed consent before testing for HIV, the participation of community groups in AIDS awareness and AIDS education programs, and the “acknowledgement of the importance of involving those most at risk for disease in the shaping of public policy.” Support for these policies developed in spite of, or perhaps in some cases in the light of, a delay of years in almost all countries between the time AIDS cases were first reported and any substantial governmental initiative in AIDS treatment or prevention.

Kirp and Bayer view the widespread adoption of policies that sought “to foster the inclusion of those with HIV or at risk of HIV, rather than advocating their control,” as the result of an “exceptionalist perspective” developed during the first decade of the AIDS epidemic by “an alliance of gay leaders, proponents of privacy, physicians, and public health officials.” Somewhat surprisingly, or at least prematurely, they promote the thesis that we are currently in the process of “normalizing AIDS” and that HIV exceptionalism will “almost certainly be viewed as a relic of the epidemic's first decade.”

To support their thesis, the editors cite the availability of “enhanced therapeutic interventions” that have encouraged access to early medical treatment and hence have “weakened the claims of those who sought to argue that AIDS is so fundamentally different from other sexually transmitted diseases that it requires unique policy responses.” These therapeutic interventions are far from perfect, but they have unquestionably led physicians to test persons at risk for HIV. Nevertheless, it is not clear why testing should be undertaken without incorporating the voluntarist lessons of the first decade of the epidemic, when doing so would encourage wider testing and avoid discrimination against those who are HIV-positive, as well as those who test negative but who identify themselves as at risk for infection. Unless such discrimination is eliminated, there can be no true normalization of AIDS policy.

Similarly, the editors state that zidovudine, pentamidine, and didanosine have led to a shift in policy making. They feel that the medicalization of the problem has made it more properly the province of doctors and scientists. This assertion comes precisely at a time when physicians and other care givers are recognizing a key lesson from the first decade of the epidemic: that AIDS is an illness that requires cooperation and inclusion.

If anything, the lesson of the first decade must be that exceptionalism should not end but, rather, become the rule. From a physician's perspective, it is apparent that we will not succeed in containing AIDS without working with communities at risk to develop prevention programs. In the chapter on Germany, Guenter Frankenberg highlights a fundamental issue in prevention that we have tended to avoid: the relative merits of a “cognitive strategy,” which emphasizes counseling and education, and a “conflict strategy” that recognizes the importance of information and education but also aims at strengthening the psychological autonomy needed to deal with conflicts between self-preservation and sexual desire, between lust and fear of death.

We need to incorporate these ideas into what we study, what we teach, and what we practice. This would not happen in a traditional medical model; it may happen if we continue to learn from the principles of inclusion elucidated during the first decade of the AIDS epidemic. When we consider other critical public health issues of our time, these principles seem all the more important. Problems such as domestic violence, drug abuse, and access to health care all demand a new look at how we go about solving public health problems.

Harvey J. Makadon, M.D.
Harvard Medical School, Boston, MA 02115