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. The Bleeding Disease recounts the promising
and perilous history of American medical and social efforts to manage
hemophilia in the twentieth century.
This is both a success story and a cautionary tale, one built on 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.
Stephen Pemberton evokes the allure of normalcy as well as the human
costs of medical and technological progress in efforts to manage
hemophilia. He 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.
