Harriet S.MeyerMD, Contributing EditorJonathan D.EldredgeMLS, PhD, Journal Review EditorRobertHoganMD, adviser for new media
by Susan Resnik, 294 pp, with illus, $29.95, ISBN 0-520-21195-2, Berkeley, Calif, University of California Press, 1998.
For the inspiring, but in many ways sad, story surrounding the history of classic hemophilia during the last half century, Susan Resnik has portrayed the trials and tribulations of the research effort that has dramatically changed the lives of children with hemophilia. Now they can become adults with hopes for the future, but with those hopes, often dashed by the AIDS epidemic during the last score of years, there remains a healthy skepticism.
The author gained great insight into what it meant to have hemophilia because of her position as Director of Education of the National Hemophilia Foundation beginning in 1979, three years before the first hint of AIDS appeared in her extended family—the hemophilia community to whom she dedicates this book. In 1982, she returned to Columbia University to enter a doctoral program in public health and anthropology. The first ten chapters constitute much of her graduate thesis, which was to a great extent based upon oral histories from major players in the National Hemophilia Foundation, the scientific community, such government agencies as the Centers for Disease Control and Prevention (CDC), and hemophiliacs who were fortunate enough to have survived up to the time of her writing. She notes that several of these brave ones have now passed on from AIDS or their disease. Some sadder passages recount the development of AIDS in spouses and the shunning of their children by their friends and community.
HemophiliaBlood Saga: The Social History of the U. S. Hemophilia Community, 1948-98. JAMA. 2000;283(1):124. doi:10.1001/jama.283.1.124-JBK0500-5-1