Medicine betrayed: hemophilia patients and HIV in the US.
The contamination of blood products by HIV in the early 1980s resulted in thousands of deaths among people with hemophilia in the United States and elsewhere. In the US, industry, government, physicians, and advocacy groups were implicated in this tragedy. In response to pleas from members of the US hemophilia community, the Institute of Medicine (IOM) of the National Academy of Science convened a public hearing to identify the institutional determinants of the HIV/AIDS epidemic among US hemophilia patients. The resulting IOM Report (1995) established a narrative of the crisis and indicated necessary improvements to the management of the US blood supply. The Report, however, failed to address the hemophilia community's demands for accountability and retribution. In this paper we explore the moral and social dimensions of this tragedy through narrative analysis of the original testimonies of hemophilia sufferers, interviews with some patients and their families, and a re-examination of the text of the IOM Report itself. We examine the process by which this crisis was addressed--through the discourses of science and law--and how it was ultimately framed as a failure of management and oversight rather than a moral failure of the for-profit health-care system. Thus, while the Report and its aftermath demonstrate powerfully how testimonials of suffering can influence public policy, by not addressing what is at stake for the victims--failure to protect patients in an era of increasingly commodified health care--it led to an exculpatory solution that obfuscated the moral dimensions of suffering.
Keshavjee
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Department of Social Medicine, Harvard Medical School, Boston, MA 02115, USA. salmaan@post.harvard.edu
Weiser
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Kleinman
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A
D000739:Anecdotes as Topic; D001771:Blood Banks / Q000191:economics / Q000592:standards*; D001782:Blood Donors; D017848:Blood-Borne Pathogens; D030861:Capitalism; D003254:Consumer Advocacy; D003257:Consumer Product Safety / Q000592:standards; D004989:Ethics; D015658:HIV Infections / Q000453:epidemiology / Q000209:etiology / Q000635:transmission*; D006467:Hemophilia A / Q000628:therapy*; D006801:Humans; D007049:Iatrogenic Disease / Q000453:epidemiology*; D009014:Morals; D015969:National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division; D010819:Physician's Role; D012941:Social Responsibility; D065227:Transfusion Reaction; D014481:United States / Q000453:epidemiology; D014486:United States Food and Drug Administration; D014837:Voluntary Health Agencies