Oral history interview with Adam H., 1991

 

Name
H., Adam (Interviewee)
Title
Oral history interview with Adam H., 1991
Other Titles
Reminiscences of Adam H. : oral history, 1991; Oral history of Adam H., 1991
Abstract
Family roots in Europe and New England; advantages for people with hemophilia of growing up in a relatively wealthy family; early memories of hemophilia and its treatment; school absenteeism; childhood association with adults more than with fellow children as a result of heaving hemophilia; experiences with hemophilia treatment and with various physicians as a young adult; social and political expe riences in college; early involvement with New York Metropolitan chapter of National Hemophilia Foundation (NHF); lack of a "hemophilia community" in mid-1960s; early treatment with Factor VIII concentrate; common "principles" among people with hemophilia; isolation as a person with hemophilia; first education in home care; involvement in disagreement between American Red Cross and American Association of Blood Banks over providing a service versus selling a product; introduction to the NHF as Vice President of the New Jersey chapter; disagreements with NHF members over various issues; involvement of pharmaceutical companies in hemophilia care; involvement with William Bissell in developing by-laws for NHF; financial problems at NHF during late 1970s; evolution in sense of purpose of NHF over time; similarities and differences in hemophilia organizations and other health organizations; work with National AIDS Commission; advent of and first reaction to AIDS in hemophilia community; NHF’s response to AIDS in hemophilia community; redistribution of power between NHF Board of Directors and its Medical and Scientific Advisory Committee (MASAC); information distribution to people with hemophilia regarding AIDS in early 1980s; issues regarding restrictions on blood donors at this time; "hemos" versus "homos" in discussion of blood donations in early AIDS era; debates within NHF at this time as to appropriate actions to take regarding AIDS in the hemophilia population; introduction of heat-treated blood products to treat hemophilia and controversy over their efficacy and cost; issues regarding spread of AIDS to female sexual partners of people with hemophilia; controversy regarding use of concentrated blood products versus cryoprecipitate; issues regarding the pediatric hemophilia population and AIDS; discrimination towards people with hemophilia and HIV; future of hemophilia care and possibility of a cure
Collection Name
Hemophilia oral history collection
Subjects
Blood banks; Hemophilia--History.--United States; Hemophilia in children; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Lawyers; H., Adam; National Hemophilia Foundation
Format
oral histories; sound recordings
Genre
Interviews
Date
1991
Language
English
Library Location
Columbia Center for Oral History, Columbia University
Browse Location’s Digital Content
Catalog Record
12169866
Also In
Oral History Archives at Columbia
Time-Based Media
Time-Based Media
Persistent URL
https://dx.doi.org/10.7916/d8-at1b-px31
Related URLs
Available digital content for this interview.