Blood Saga: Hemophilia, AIDS, and the Survival of a Community (review)

Susan Resnik. Blood Saga: Hemophilia, AIDS, and the Survival of a Community. Berkeley and Los Angeles: University of California Press, 1999. xvi + 292 pp. Ill. $29.95; £18.50.

During the early 1980s, almost 50 percent of hemophiliacs living in the industrialized world were infected by the human immunodeficiency virus (HIV) because their blood-based medications were HIV-contaminated. ¹ As they became aware that they were sick or dying, they reacted with anger, grief, resignation, desperation, shock, and fear. In some cases, these feelings unified them as they sought to cope with a common crisis. At other times, such feelings threatened to dissolve the community of hemophiliacs: individuals in pain were determined to identify a cause of their suffering, and some directed their accusations at the leaders of hemophilia groups.

Susan Resnik engages an important and moving aspect of the HIV/blood story. In a book remarkable for its attention to the observations of a wide range of actors, she offers a "participatory social history of the U.S. hemophilia community" (p. 221). Concentrating on the half-century from 1948 to 1998, she intertwines more than fifty interviews with insights drawn from the medical, anthropological, and sociological literatures. What emerges is a moving chronicle of how people with hemophilia, individually and collectively, have coped with an iatrogenic tragedy that has left no household unscathed.

The book offers a nuanced context for understanding the tenor and texture of clashes over AIDS and blood. In what Resnik describes as the "golden era," roughly covering the years 1960-80, medical advances transformed hemophilia from a crippling bleeding disorder into a manageable genetic anomaly. No longer did hemophiliacs need to spend long hours in hospitals having painful internal hemorrhaging treated with large doses of blood plasma; instead, they could care for themselves by injecting blood-clotting concentrates in their own homes. As a result, they experienced what Resnik describes as a process of "coming out." Suddenly, daily activities ceased to be limited by the fear of blood loss, and hemophiliacs were able to attend "normal" schools, play sports, and choose their desired work activity. At the same time, hemophilia organizations, once dominated by scientists and physicians, came under the control of hemophiliacs or their parents.

This extraordinary transformation, occurring in less than two decades, explains Resnik's focus on the survival of the hemophilia community. The wrenching realization that a treatment triumph had brought with it the ingredients of tragedy weakened the fragile fabric that linked hemophiliacs. Individuals were sick and dying, and the bonds of community forged by a common blood ailment were threatened by a cacophony of blame directed at hemophiliacs' organizations, physicians, and leaders. In short, HIV-tainted blood endangered both individual and collective vitality, and called into question the continued existence of a unified hemophiliac population.

Resnik was herself a player in her "participatory" history, having been the education director of the National Hemophilia Foundation (the largest organization of hemophiliacs in the United States) well into the 1980s. This undoubtedly provided her with particularly good access to documents and NHF personnel. It may also have led her to overlook some of the fury directed at the NHF. When the HIV/Peer Association's Michael Rosenberg called a former NHF medical director the "Mengele of the hemophilia holocaust," ² for example, his accusation shattered the notion that hemophiliacs inhabited a single, common community--yet Resnik neither discusses this inflamed rhetoric nor analyzes the rawness of such anger. Some of the most interesting aspects of personal, medical, political, and legal tensions that emerged within the blood brotherhood of hemophiliacs thus remain unexplored, making it difficult to assess the extreme challenges to and resilience of hemophilia unity.

Resnik takes a unique approach to what she calls a "research code of ethics" (p. 233). To maintain the confidentiality of her informants, she develops an elaborate set of code names. As the...