NJIT Associate Professor Stephen Pemberton will speak about hemophilia to physicians on May 16, 2012 in Princeton at the Nassau Club at a special meeting of the Medical History Society of New Jersey. Pemberton is the author of The Bleeding Disease, a history of medical and social efforts to manage hemophilia in the last century in the US. Pemberton will deliver the Society’s Morris Saffron lecture. The public is invited to attend the talk. For more information, contact Dr. Sandra Moss firstname.lastname@example.org; tickets cost $58 for members and $63 for non-members.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.
Pemberton’s book recounts 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. The book 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.