Oral history interview with Richard S. James, 1990

 

Name
James, Richard S (Interviewee)
Resnik, Susan, 1940- (Interviewer)
Title
Oral history interview with Richard S. James, 1990
Other Titles
Reminiscences of Richard S. James: oral history, 1990; Oral history of Richard S. James, 1990
Abstract
Childhood treatment of hemophilia; parents’ involvement with the Northern Ohio Hemophilia Chapter; childhood limitations as a result of hemophilia; differences in relationship with the "medical establishment" now and as a child; advantages of comprehensive care model; differences in care at hemophilia and at AIDS clinic; aspects of denial in the hemophilia community; involvement with National Hemop hilia Foundation (NHF); aspects of the "hemophilia community"; experiences educating doctors and medical students regarding hemophilia; "tripod" of the hemophilia community - patients, physicians, chapters - and changes in those relationships over time; advantages of "rap sessions" in the hemophilia community; aspects of leadership in the community; issues regarding homophobia and HIV/hemophilia treatment; the gay community’s response to AIDS and its impact on hemophilia; communication regarding AIDS/HIV between the gay and the hemophilia community; aspects of a "hemophilia culture"; isolation and privacy versus independence within the hemophilia community; response to women’s support groups; impact of the HIV test on one’s behavior regarding risk reduction; negative impact of "squabbling" at meetings of hemophilia leadership; future of hemophilia care; issues regarding lack of government involvement in early stages of AIDS epidemic; perceived implication of the "conservative and religious fundamental community" in the above; economic issues regarding hemophilia treatment products, medical insurance, etc.; work with the Community Constituency Group of the AIDS Clinical Trials Group (ACTG); changes in provider-patient relationships over time; gay activists groups’ pressuring of the ACTG; possibilities of a cure for hemophilia via gene therapy in the near future; problems with recombinant DNA clotting factor; skyrocketing costs of hemophilia treatment products; different levels of exposure to HIV via different treatment products; issues regarding sexual partners of people with hemophilia
Collection Name
Hemophilia oral history collection
Subjects
Hemophilia--History.--United States; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Hemophilia in children; James, Richard S; National Hemophilia Foundation
Format
oral histories; sound recordings
Genre
Interviews
Date
1990
Note
Interviewed by August 13 and September 10, 1990
Note (Provenance)
Susan Resnik, Gift, circa 1992
Language
English
Library Location
Columbia Center for Oral History, Columbia University
Browse Location’s Digital Content
Catalog Record
12169896
Also In
Oral History Archives at Columbia
Time-Based Media
Time-Based Media
Persistent URL
https://dx.doi.org/10.7916/d8-41rh-9w26
Related URLs
Available digital content for this interview.