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
Hemophilia--History.--United States; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Hemophilia in children; James, Richard S; National Hemophilia Foundation