Blood Feuds: AIDS, Blood and the Politics of Medical Disaster

Professor of MedicineDirector, Comprehensive AIDS CenterNorthwestern University Medical SchoolChicago, Illinois

April 04, 2000

Introduction

The safety of the blood supply and therefore of products derived from blood such as coagulation factors represents a major public health and medical care concern. Eric Feldman and Ronald Bayer, Associate Director of New York University's Institute for Law and Society and Professor at the Joseph L. Mailman School of Public Health, Columbia University, New York, NY, respectively, have assembled a group of public health, health policy, and medical authorities along political leaders, sociologists, and philosophers to examine the tragedy of infection with the human immunodeficiency virus in persons with clotting factor deficiencies.

The result is Blood Feuds: AIDS, Blood, and the Politics of Medical Disaster, a thorough history of the epidemiologic, political, and legal events surrounding the growing awareness of the fact that use of Factor VIII, which had liberated hemophiliacs from total dependence on medical care, resulted in a new and more deadly problem. The editors have chosen to have highly knowledgeable individuals review the responses of government officials, the medical community identified with care of persons with hemophilia, the blood banking authorities, and the Hemophilia Associations in 8 industrialized nations (Australia, Canada, Denmark, France, Germany, Italy, Japan, United States) during the period 1982 to the present.

Each chapter discusses the history and status of blood banking and the symbolic meaning of blood and blood donation in the 8 different cultures. The authors document major variations in the structure of healthcare, responsibility for maintenance of an adequate and safe blood supply, and dependence on foreign sources, especially the United States, for coagulation factors. The outrage of the hemophilia communities at what was perceived as a betrayal by governments, the medical establishment, and the pharmaceutical suppliers, however, was similar and worldwide.

In each country, affected patients were able to mobilize and to a greater or lesser degree engage the media and political figures to address what in some instances was judged to be a scandal leading to criminal justice proceedings. The issues cited were delays in institution of donor screening, delays in screening donated blood with HIV antibody testing, and failure to withdraw contaminated factor from use and replace with heat-treated factor for economic reasons after it was known that these actions would protect individuals from infection. The authors recognize that implementation of these effective policies would not have prevented the majority of individuals from infection, as pooled plasma from which clotting factors were derived was contaminated 3 to 4 years before it was realized that the problem existed. As a consequence, the governments of all 8 countries have enacted legislation that recompenses, at a minimum, persons with hemophilia and in some instances infected wives for medical care of HIV infection. In some countries, the cost of these programs exceeds the budget for overall AIDS prevention services and/or research on HIV/AIDS.

The second part of the volume summarizes much of the information presented in the reviews of the various national "blood feuds." These chapters raise many important and still unanswered questions. The writers stress that the blood supply continues to be a vulnerable albeit extremely valuable asset required for sophisticated medical care. Furthermore, no modern society has addressed fully the issue as to the amount of resources that should be expended in the attempt to eliminate all risk inherent in exposure to blood or blood products. To address this issue in democratic societies, the medical establishment and governments are dependent, ultimately, on an informed electorate that understands priorities and probabilities. As illustrated by this volume, the structural anomalies of healthcare systems interacting with political systems and corporate funding can have unintended and tragic consequences.

Not all readers will agree with all of the authors' conclusions, but this history provides a basis for beginning to understand and address a significant healthcare policy issue.

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