Blood Feuds: AIDS, Blood, and the Politics of Medical Disaster
On July 16, 1982, the Centers for Disease Control reported the occurrence of Pneumocystis carinii pneumonia in three male patients with severe hemophilia A and no other underlying disease. The clinical and immunologic features -- which were those of the syndrome soon to be known as AIDS -- were strikingly similar to those in previously reported cases in homosexual men, heterosexuals who had used injected drugs, and Haitians who had recently migrated to the United States. All three of the patients with hemophilia had received frequent injections of factor VIII concentrate. The editorial note in Morbidity and Mortality Weekly Report concluded: "Although the cause of the severe immune dysfunction [in these patients] is unknown, the occurrence among the three hemophiliac cases suggests the possible transmission of an agent through blood products."This seminal report, which was soon followed by other reports of cases associated with transfusions of blood or blood products, produced profound changes in perceptions of AIDS and of the safety of blood. Scientists as well as the public became convinced of the transmissibility of an "AIDS agent," and focused efforts soon resulted in the discovery of the causative virus (later named the human immunodeficiency virus, or HIV). But the public perception of the safety of blood was altered, and AIDS changed forever the rules for those operating and regulating blood systems.This history and its lessons are thoroughly reviewed in Blood Feuds: AIDS, Blood, and the Politics of Medical Disaster. This fascinating book is uniformly well written and easy to read, especially for an edited book with several authors. It contains 11 chapters in addition to an introduction and conclusion. Part I comprises eight chapters, each of which gives a summary analysis of the national responses to the crisis caused by the presence of HIV in the blood supply in a particular country -- the United States, Japan, France, Canada, Denmark, Germany, Italy, and Australia. As the authors state, "Because the unfolding of conflicts over contaminated blood occurred almost simultaneously in different nations, blood became the vantage point from which to analyze the way in which countries with distinctive historical legacies managed a common crisis." The chapters on the individual countries have been written by thoughtful and knowledgeable experts and deal less with technical issues than with public concern and the response of the government and the private sector in each country.The descriptions of the differences as well as the similarities in national responses to a nearly identical crisis make fascinating reading. The authors evaluate the part played by such factors as the extent to which the government is responsible for directly providing blood and blood products, the dependency of the country on imported blood or plasma, the visibility of the HIV epidemic in the country, and various cultural differences. Particularly intriguing are the comparisons of how different countries encountered liability and approached the issue of compensating patients with hemophilia. Unlike other battles in the AIDS epidemic, which ebbed in the late 1980s, Bayer and Feldman note, "the controversy surrounding blood persisted. Indeed, the intensity of the controversy over blood and AIDS underwent a process of amplification in the early 1990s," after the beginnings of activism among patients with hemophilia and their families. In many industrialized nations, patients with hemophilia had been liberated by the liberal use of factor VIII concentrates in the 1970s. The increase in life expectancy and the decrease in morbidity that resulted from treatment with products pooled from the plasma of thousands of donors (who were usually paid) was inadvertently accompanied by a tragic risk of a new disease, AIDS.In a poignant chapter on the activism of patients with hemophilia and their families, Kirp details how "the victims ultimately regarded what happened as no accident but rather as the inevitable result of decisions driven by corporate greed." Following the example of ACT UP (the AIDS Coalition to Unleash Power) years earlier, patients with hemophilia organized, demonstrated, and lobbied, seeking compensation through the courts and legislative processes. The "blood scandals" and their personal and institutional ramifications are richly described in the book. In the concluding chapter, Marmor and colleagues analyze the comparative politics and note that the intensity of the scandal in a given country was not a good measure of the wrongdoing in that nation. Of course, although concern about the safety of blood was indelibly changed by the experience with AIDS, more recent questions involve hepatitis C and even bovine spongiform encephalopathy (mad cow disease). By providing a cogent and thorough description of the AIDS saga, Blood Feuds provides insight into coping with these current and future threats to public health. This excellent book is well worth reading.Reviewed by James W. Curran, M.D., M.P.H.Copyright © 1999 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.