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
Origin Information
1991
Date
1991
Language
English
Library Location
Columbia Center for Oral History, Columbia University
Browse Location’s Digital Content
Catalog Record
12169866
Also In
Time-Based Media
Persistent URL
https://dx.doi.org/10.7916/d8-at1b-px31
Related URLs
Available digital content for this interview.