Normality within limits: Hemophilia, the citizen-patient, and the risks of medical management in the United States of America, from World War II to the age of AIDS.

摘要

Hemophilia was once regarded as a death sentence for the unfortunate boys who inherited this familial bleeding disorder, Today, persons diagnosed with hemophilia can expect to lead relatively “normal” lives. In the United States, hemophilia became manageable in the span of forty years, roughly between 1938 and 1978. A critical turning point occurred around 1970 when clotting factor concentrates emerged as a preferred treatment for hemophilic bleeding. Together with the introduction of home transfusion care and federally funded hemophilia treatment centers in the 1970s, clotting factor concentrates allowed hemophilia patients to experience unprecedented measures of autonomy. Sufferers expected to lead fitter, more productive lives in the 1980s. Instead, they found themselves confronting AIDS. Between 1979 and 1985, the vast majority of the U.S. hemophilia population contracted HIV through their treatments. Beyond the loss of life, sufferers feared that they would also lose their opportunity or “right” to be “normal.”; This history describes the American hemophilia patient's predicament over the past six decades. It recognizes that hemophilia is a disease defined by expertise, gender, and technology, and describes how persons with hemophilia were fashioned into citizen-patients before the advent of the AIDS epidemic. Since World War II, hemophilia management has sought to transform hemophilic boys into productive adolescents and young men. Hemophilia advocacy gained steady momentum in the 1950s and 1960s, giving rise to meaningful collaborations between hemophilia sufferers and medical experts. “comprehensive” therapeutic perspective was the result. Among its many qualities, this perspective valorized the “normal” male body as a means toward empowering hemophilic boys and their families. By the late 1960s, hemophilia patients in the U.S. were not only experiencing “normal” measures of adolescence and adulthood, but also embracing a liberal model of disease management that promised them unprecedented credibility as health consumers and citizens. By examining American attitudes about normality and liberalism, this history of the hemophilia patient provides evidence for understanding the relationship between biomedicine and citizenship in recent U.S. history. It also explores how medical engagements with disease and disability embody distinctly American passions for freedom, progress, and the promises of science and technology.