Hemophilia oral history collection, 1987-1998
The Hemophilia oral history collection was collected by Susan Resnik to create a social history of hemophilia, a genetic bleeding disorder. Resnik had familiarity with the hemophilia community before the oral history project started. In 1979, she started work with the National Hemophilia Foundation as education director. She was involved in the development of the Patient/Family Model to help health providers educate patients and family members about medical aspects of care. Resnik continued to work part-time at the NHF when starting as a doctoral student at Columbia University's School of Public Health in 1983. She left the NHF in 1990 to focus on writing her dissertation. The bulk of interviews started the same year and were a core component of her dissertation research. Resnik received research funding from the U.S. Agency for Health Policy Research. Her interviewing practice was informed by anthropology and employed ethnographic strategies. Interviewees were drawn from Resnik's professional acquaintances and connections made through key interviewees. Resnik submitted her dissertation in 1994. In 1997, she conducted eleven additional interviews as she expanded her dissertation research into a monograph titled "Blood Saga: Hemophilia, AIDS, and the Survival of a Community." This book was published by University of California Press in 1999. Further information about the history of the oral history project, Resnik's interviewing methodologies, and standardized questions for interviews can be found in the appendix of "Blood Saga"
Scope and Contents
The collection is a wide-ranging social history of the genetic bleeding disorder hemophilia in the 20th century. It covers topics of hemophilia's social impact, the first-hand experiences of people with hemophilia, treatment, medical research, and advocacy. Narrators include three generations of men with hemophilia, family members, physicians, community leaders, treatment center administrators, government officials, pharmaceutical company officials, and board members of the National Hemophilia Foundation. Due to contamination of the blood supply in the United States, 70-90% of the severe hemophilia population was HIV positive by the late 1980s. As such, the collection also provides considerable information about the early years of HIV/AIDS in the U.S.
Topics covered related to medical research include the development of Factor VIII and other blood products, developments in research before and after World War II, and research of heat treatment to destroy the HIV virus in blood products. The interviews examine both the medical and social aspects of treatment. Specific topics addressed include comparison of Factor VIII and cryoprecipitate, physician-patient relationships, development of the Patient/Family Model for education, variations in regional hemophilia care, and comparison of treatment for hemophilia with that of other conditions. Social aspects of hemophilia are dealt with in depth, including the childhood and adult experiences of individuals with hemophilia. Some specific topics addressed include the mental health impacts of hemophilia; education and employment challenges; men's and women's support groups for patients and family members; risk-taking behavior; and the concept of a "hemophilia community." The collection also documents the early years of HIV/AIDS, including the medical and social dimensions of the discovery of AIDS; stigma against people with AIDS in the 1980s-1990s; and tension between the hemophilia and gay communities.
The collection also addresses the organizations that advocated for hemophilia care and research: their activities and internal dynamics. The National Hemophilia Foundation (NHF) is discussed at length, as are activities of local chapters and committees such as the Medical and Scientific Advisory Council (MASAC). International responses are discussed through the activities of the World Federation of Hemophilia. Government support of research and care is also discussed, particularly the activities of the Centers for Disease Control (CDC) and Maternal Child Health Bureau (MCHB). The role of private companies is also addressed, particularly the scientific, medical, and economic aspects of treatment products.
The collection's narrators are: Charles Abildgaard, David Agle, Sharon Barrett, Val Bias, G. William Bissell, Sheila Brading, Kenneth Brinkhous, Regina Butler, Charles Carman, Barbara Chang, Maribel Clements, Donald Colburn, Sally Crudder, Larkey DeNeff, Corey Dubin, Craig Epson-Nelms, Bruce Evatt, Lisa Flam, J. William Flynt, Katherine Gerus, Marvin Gilbert, Ed Gomperts, Mary Gooley, Eugene H., Adam H., Paul Haas, Peggy Heine, Margaret Hilgartner, Keith Hoots, Vince Hutchins, Richard James, Richard Johnson, Laurie Kelley, Craig Kessler, Dana Kuhn, Dale Lawrence, Peter Levine, Richard Lipton, Robert Massie, Merle McPherson, Karen Meredith, Paul Phillips, Beatrice Pierce, Glenn Pierce, Oscar Ratnoff, Shelby Dietrich Rector, Frederick Rickles, Marthe Schnabel, Billie Sullivan, and Michael Sutton. There is also a recording of the 1989 Annual National Hemophilia Foundation Meeting