Oral history interview with Adam H., 1991

Scope and Contents

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 experiences 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

Subjects

• AIDS (Disease)--United States--History.
• Blood banks.
• H., Adam--Interviews.
• Hemophilia--Political aspects.
• Hemophilia--Social aspects.
• Hemophilia--United States--History.
• Hemophilia in children.
• Interviews.
• Lawyers--Interviews.
• National Hemophilia Foundation.
• Oral histories (literary works)