The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress

By the 1970s, a therapeutic revolution, decades in the making, had transformed hemophilia from an obscure hereditary malady into a manageable bleeding disorder. Yet the glory of this achievement was short lived. The same treatments that delivered some normalcy to the lives of persons with hemophilia brought unexpectedly fatal results in the 1980s when people with the disease contracted HIV-AIDS and Hepatitis C in staggering numbers. The Bleeding Disease recounts the promising and perilous history of American medical and social efforts to manage hemophilia in the twentieth century. This is both a success story and a cautionary tale, one built on the emergence in the 1950s and 1960s of an advocacy movement that sought normalcy—rather than social isolation and hyper-protectiveness—for the boys and men who suffered from the severest form of the disease. Stephen Pemberton evokes the allure of normalcy as well as the human costs of medical and technological progress in efforts to manage hemophilia. He explains how physicians, advocacy groups, the blood industry, and the government joined patients and families in their unrelenting pursuit of normalcy—and the devastating, unintended consequences that pursuit entailed. Ironically, transforming the hope of a normal life into a purchasable commodity for people with bleeding disorders made it all too easy to ignore the potential dangers of delivering greater health and autonomy to hemophilic boys and men.

Table of Contents:
Preface Acknowledgments Introduction: Hemophilia as Pathology of Progress 1. The Emergence of the Hemophilia Concept 2. The Scientist, the Bleeder, and the Laboratory 3. Vital Factors in the Making of a Masculine World 4. Normality within Limits 5. The Hemophiliac's Passport to Freedom 6. Autonomy and Other Imperatives of the Health Consumer 7. The Mismanagement of Hemophilia and AIDS Conclusion: The Governance of Clinical Progress in a Global Age Notes Index

About the Author :
Stephen Pemberton is an associate professor in the Federated Department of History at the New Jersey Institute of Technology and Rutgers University, Newark. He is coauthor of The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease, also published by Johns Hopkins.

Review :
The author's research was impeccable and he writes in a very readable manner. —Book Bargains and Previews This book holds wide appeal for both lay readers and medical professionals who are interested in the history of medicine, the ability of technology development to produce both good and bad outcomes, and the influence of societal perceptions on health policy and technology development. —Bruce L. Evatt, Journal of Clinical Investigation A thoughtful, intelligent, and informative contribution to the history of hemophilia and the shaping of safety policies in blood use. —Choice Few stories in modern medicine oscillate as dramatically between triumph and tragedy as the history of hemophilia. The Bleeding Disease combines classic history of science with sociological analysis to tell this story in a style that should appeal to both medical and lay audiences. —Katherine A. High, Nature Medicine Excellent. —Chris Feudtner, Bulletin of the History of Medicine A well-researched, readable, and useful history of hemophilia in the United States, contextualized within its scientific, social, and economic milieu . . . Pemberton's book will serve as an inspiration and a cautionary tale about medical 'progress' writ large. —Jacalyn Duffin, Canadian Bulletin of Medical History A great read for everyone interested in scientific development, technological progress and the management of disease. —The Good Care Guide Provides a thorough and detailed history of hemophilia. —William G. Rothstein, History of Science Society A really good review of the historical developments of medicine within a particular clinical condition. —Ibadete Fetahu, Nursing Times A great read for everyone interested in scientific development, technological progress and the management of disease. —Nursing Standard A well-researched and compelling history of hemophilia. This book will undoubtedly be a standard for future histories in this area. —Richard Nollan, Journal of the History of Medicine and Allied Sciences A meticulously researched and consistently argued work of scholarship. . . The Bleeding Disease is a significant contribution to the history of biomedicine. —Peter Hobbins, Metascience The Bleeding Disease makes an important contribution to the history of American biomedicine in the twentieth century. —Sophie Chauveau, Medical History The Bleeding Disease is a welcome addition to the literature of that crisis and the history of haemophilia that preceeded it . . . This Faustian story has been told before; Pemberton enriches he telling not by seeking to blame the companies, the doctors or the regulators but by emphasising the desire for haemophiliacs to have normal lives. It is a dream shared by sufferers of any disease that have made the transition from deadly to chronic from diabetes to AIDS. —Social History of Medicine Pemberton has done an admirable job of showing us the vast potential, and substantial limitations, of medical science to solve health problems. . . This book is strongly recommended for those studying the history of medicine, the history of medical technology, and the sociology of medicine. —Stephen Inrig, American Historical Review