The Bleeding Disease

Hemophilia and the Unintended Consequences of Medical Progress

Stephen Pemberton

Publication Year: 2011

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.

Published by: The Johns Hopkins University Press

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Cover

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pp. 1-7

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pp. vii-

Preface

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pp. ix-xiii

For more than six decades, the hereditary bleeding disorder known as hemophilia has spurred parents and doctors to engage in a concerted effort to normalize the experience of patients: to liberate them from the imminent threat of death, to alleviate their pain and debility, and to integrate them fully into society. ...

Acknowledgments

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pp. xv-xviii

Researching and writing this book was, at once, a collective enterprise and personal challenge. It took many years to mature as the people who informed my writing compelled me to grow. I am thankful to them all. ...

Introduction. Hemophilia as Pathology of Progress

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pp. 1-17

Knowledge about hemophilia is not uncommon. In the first half of the twentieth century, this physician’s term of art spread into popular usage as journalists reported its effects among the royal families in Great Britain, Germany, Spain, and Russia. ...

1 The Emergence of the Hemophilia Concept

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pp. 18-47

Hemophilia’s unusual visibility in the twentieth century reflected its cultural status as a disease of heredity and blood. As a bodily marker of both identity and kinship, hemophilia has provided experts and laypeople with opportunities to express their thoughts and anxieties about matters of class, race, ethnicity, and gender. ...

2 The Scientist, the Bleeder, and the Laboratory

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pp. 48-80

In 1893 British bacteriologist and immunologist Almroth Edward Wright (1861–1947) made an important hematological discovery, one far less celebrated than the turn-of-the-century vaccine discoveries for which he is typically remembered.¹ The blood of Wright’s patient, an eleven-year-old hemophiliac known in the literature as S.W., ...

3 Vital Factors in the Making of a Masculine World

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pp. 81-114

In November 1953, the Saturday Evening Post published a six-page illustrated essay bearing the provocative title: “I’ve Got the Lonesomest Disease!” (fig. 3.1). In most respects, this essay resembled many other journalistic treatments of hemophilia in the two decades after World War II. ...

4 Normality within Limits

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pp. 115-156

In 1955 the producers of the early television medical drama Medic devoted an entire half-hour episode to the story of Davey Stinson, an eleven-year-old hemophiliac who had cut himself badly after landing on a glass of milk that he inadvertently knocked from his bedside table. ...

5 The Hemophiliac’s Passport to Freedom

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pp. 157-194

On March 26, 1968, the front page of the Wall Street Journal featured the story of the seemingly miraculous recovery of Brooks Wright, a seven-year-old hemophilia patient from Greensboro, North Carolina. Wright had recently tumbled from a rocking chair onto his back. ...

6 Autonomy and Other Imperatives of the Health Consumer

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pp. 195-236

Between 1969 and 1973, television stations in New York City and other major markets regularly broadcast minute-long advertisements on behalf of the National Hemophilia Foundation. In one award-winning spot, a teenage boy named Eric Friedland stared into the camera and introduced himself: “I’m a hemophiliac. ...

7 The Mismanagement of Hemophilia and AIDS

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pp. 237-282

Blood and sex had long been intertwined with hemophilia but never more visibly or with such devastating effect than during the first two decades of the AIDS pandemic. Of the twenty thousand or so Americans with hemophilia in the early 1980s, most of them acquired HIV through contaminated blood plasma products that they routinely used to treat their bleeding disorder. ...

Conclusion. The Governance of Clinical Progress in a Global Age

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pp. 283-304

In the early twentieth-first century, hemophilia stands alongside diabetes, asthma, cystic fibrosis, HIV disease, and a growing variety of other transformed pathologies to mark both the remarkable advances made by medicine in managing disease and the frustrating circumstances that those efforts have occasionally created. ...

Notes

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pp. 305-364

Index

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pp. 365-377

E-ISBN-13: 9781421404424
E-ISBN-10: 1421404427
Print-ISBN-13: 9781421401157
Print-ISBN-10: 1421401150

Page Count: 400
Illustrations: 13 halftones, 1 line drawing
Publication Year: 2011