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7 The Mismanagement of Hemophilia and AIDS
- Johns Hopkins University Press
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237 chapter seven The Mismanagement of Hemophilia and AIDS 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. Hardest hit were the nation’s “severe hemophiliacs,” the group of more than eight thousand patients who routinely used clotting factor concentrates. Of this predominantly male population, nine out of ten would acquire HIV before public and private authorities implemented effective donor screening, HIV testing, and viral inactivation methods for plasma products in the United States.1 The tragic irony of these events was obvious. The treatments that were supposed to facilitate normalcy for the hemophiliac suddenly became vectors for a new and virulent pathology. More than any other event of the past three decades, the transfusionrelated AIDS tragedy of the 1980s has shaped contemporary American perceptions of hemophilia and the people affected by it. Most treatment specialists have sought to learn from the experience and have incorporated its lessons into their renewed efforts to render hemophilia manageable. Some within the community, however, still resist an understanding of the event that recognizes what went wrong and who might have been responsible for tragic paths taken. As recently as 2007, Louis Aledort, a leading hemophilia specialist, chastised Bruce Evatt, a former blood expert at the 238 the bleeding disease Centers for Disease Control and Prevention, in the pages of a respected hematology journal. Evatt had made an earnest effort to document how knowledge of AIDS and the blood supply evolved in relation to the American hemophilia community in the early 1980s. Aledort’s questionable advice to Evatt and other would-be historians is telling: “Now is the time for healing, not finger-pointing.”2 The story of hemophilia in the 1980s is fundamentally a story of biomedical progress gone awry. Without modern medicine’s heavy reliance of blood transfusion technologies, AIDS would have manifested itself in society very differently—likely sparing the “hemophiliac” all together. Beyond this fact, what happened in the hemophilia-AIDS tragedy remains contested by those who experienced it because there were no winners, nearly everyone made mistakes, and there is little incentive for the individuals involved to dwell on the history to the extent that an accurate accounting of their actions (or inactions) would require.3 The nation’s hemophilia population was poorly served in the 1980s by the federal government, the blood industry, and even voluntary health organizations such as the National Hemophilia Foundation and the American Red Cross. All of these institutions deserve some blame. None has fully confronted its role in the making of the crisis—despite some notable attempts in the 1990s within the courts, the U.S. Congress, and the Institute of Medicine of the National Academy of Sciences (IOM). In 2001, for example , one group of Harvard physicians went so far as to argue that the IOM’s 1995 hearing on the matter of transfusion-related AIDS “failed to address the hemophilia community’s demands for accountability and justice ” even as it “indicated necessary improvements to the management of the blood supply.” There is considerable truth here. However, these well-intentioned physicians also concluded that efforts to understand what happened to the American hemophilia community had been “framed as a failure of management and oversight rather than a moral failure of the for-profit health-care system.”4 Such assessments deserve comment, particularly if we are to write the history of such events in ways that promote healing. As the media has consistently pointed out over the years, corporate greed combined with institutional inertia and all-too-human denial to bring about this AIDS catastrophe for people with hemophilia. However, if we leave aside the question of whether for-profit enterprises should be indicted [3.236.139.73] Project MUSE (2024-03-28 10:58 GMT) The Mismanagement of Hemophilia and AIDS 239 for what happened to people with hemophilia, it should be said that the majority has not been wrong to frame transfusion-related AIDS as a failure of management or oversight. Thus, for those who think that greed played a determining role here, I urge them to question whether their interpretation is really at odds with the idea that failures in management are fundamental to this story. The...