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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

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

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