Columbia Center for Oral History Portal > Oral history interview with Richard S. James, 1990.
| Creator: | James, Richard S. | Project: | Hemophilia oral history collection.
(see all project interviews) | Phys. Desc. : | sound file : digital preservation master, WAV files (96 kHz, 24 bit) | | Location: | Columbia Center for Oral History | | Full CLIO record >> |
Scope and ContentsChildhood 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 Hemophilia 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
SubjectsAccess ConditionsCopyright by the Trustees of Columbia University in the City of New York, 2016
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