Tuesday, August 16, 2011

Stephen Pemberton's "The Bleeding Disease"

Stephen Pemberton, Ph.D., is Associate Professor in the Federated History Department at New Jersey Institute of Technology and Rutgers University, Newark, and a historian of medicine, biomedical science and technology, and public health. He is author, most recently, of The Bleeding Disease: Hemophilia and the Unintended Consequences of Medical Progress (Johns Hopkins University Press, 2011) and co-author with Keith Wailoo of The Troubled Dream of Genetic Medicine: Ethnicity and Innovation in Tay-Sachs, Cystic Fibrosis, and Sickle Cell Disease (Johns Hopkins University Press, 2006). The Professional and Scholarly Publishing Division of the Association of American Publishers recognized The Troubled Dream of Genetic Medicine as the best scholarly book in the history of science for 2006.

Pemberton applied the “Page 99 Test” to The Bleeding Disease and reported the following:
The 1980s witnessed the tragic coupling of hemophilia—the archetypal hereditary bleeding disorder—with the newly emergent AIDS epidemic. The vast majority of Americans with hemophilia contracted HIV from their blood plasma treatments. By 1996, most of these approximately 10,000 boys and men had succumbed to complications of AIDS, a tragic outcome by any measure.

What does it say about “modern” medicine and society that one of our most advanced, technology-intensive efforts to manage disease and promote health actually facilitated the opposite—greater debility and premature death? The Bleeding Disease addresses this question by detailing the decades-long therapeutic and social transformations that rendered hemophilia into a manageable disease in twentieth-century America.

Page 99 of The Bleeding Disease discusses the discovery of hemophilia B (factor IX deficiency) while exploring a critical era in the 1950s when modernizing physicians utilized the science of hematology to revisit the problem of hemophilia and redefine it in light of a growing spectrum of bleeding disorders beyond “classical hemophilia” in the male (factor VIII deficiency). Prior to these post-WWII discoveries of atypical forms of hereditary bleeding, hemophilia was defined as “an inherited tendency in males to bleed.” It was, in short, a male disease. New blood tests and growing awareness of the clinical varieties of hereditary bleeding led, in 1950-53, to the first bona fide cases of “female hemophiliacs,” followed over the next decade by a medical redefinition of hemophilia that again limited its diagnosis almost exclusively to males.

The therapeutic culture surrounding hemophilia from the 1950s through the 1970s focused on the male pediatric patients who had the severest, most intractable forms of the bleeding disorder. Yet, as the The Bleeding Disease attests, the gendered dimensions of this evolving therapeutic culture had profound ramifications, and not only for Americans with bleeding disorders. In the 1980s, for instance, the enormous attention directed at the gay community and its struggles with HIV/AIDS brought the nation’s predominantly male hemophilia population—with its history of embracing mainstream masculine norms—into sudden and close identification with stereotyped perceptions of homosexual men and gay lifestyles. The social convergence of hemophilia and AIDS was problematic for both gay Americans and Americans with hemophilia. Indeed, the FDA’s ongoing ban on gay blood donors and other feuds regarding the nation’s blood resources since 1982 cannot be understood apart from the peculiar history of hemophilia management in America.
Learn more about The Bleeding Disease at the Johns Hopkins University Press website.

--Marshal Zeringue