crown CU Home > Libraries Home
Columbia Center for Oral History Portal >

Oral history interview with Mary Gooley, 1991

Creator: Gooley, Mary
Project: Hemophilia oral history collection.
(see all project interviews)
Phys. Desc. :Transcript: 129 pages Sound recording: 1 sound cassette
Location: Columbia Center for Oral History
Full CLIO record >>

Scope and Contents

Employment as medical technologist and first experience with persons with hemophilia; early "treatments" for hemophilia such as peanut butter and gelatin; self-education re: hemophilia; experiences with transfusing people out of her home; genesis of the Rochester chapter of NHF; genesis of the Rochester treatment center; early personal involvement with NHF: beginning of the NHF; aspects of the "hemophilia community"; involvement in making own cryoprecipitate for her center; work with Dr. Henry Jordan, a pioneer in orthopedic hemophilia care; obtaining a dentist for the center who was interest in hemophilia care; issues at the Greyston Conference on hemophilia in the late 1960s; genesis of comprehensive care for people with hemophilia and problems with same; involvement with pharmaceutical companies; increasing involvement with NHF; criticism by others regarding hemophilia treatment center run mostly by lay people as opposed to physicians; definition of "difficult" patients and issues of compliance; efforts to persuade Blue Cross to cover costs of home care for people with hemophilia; advent of federal funding for treatment of hemophilia; process of implementing legislation regarding such funding; testimony in Congress for purpose of obtaining funding; experiences as member of advisory board to Maternal Child Health Bureau regarding administration of funding; outreach to underserved areas as a result of federal funding; regionalization of hemophilia care; treatment center responsibilities versus chapter/advocacy responsibilities; advent of and responses to AIDS in hemophilia population; emotional responses of patients and families to AIDS; work with developing local chapters of the National Hemophilia Foundation (NHF); disagreements between NHF and various local chapters; level of consumer involvement in chapters and in NHF; dedication of a Japanese garden as a memorial to people with hemophilia


Access Conditions

Copyright by the Trustees of Columbia University in the City of New York, 2016

Using this collection

Columbia Center for Oral History

Columbia University
535 West 114th Street
801 Butler Library, Box 20
New York, NY 10027
(212) 854-7083


Columbia Center for Oral History