Reminiscences of Paul Haas : oral history, 1990; Oral history of Paul Haas, 1990
Abstract
Discovery that son had hemophilia; self-education and choices made regarding how to raise sons with hemophilia; involvement with local hemophilia chapter; involvement with Ohio state hemophilia advisory committee and work with Charles Carman; service on the Board of Directors of the NHF; questions of cost of and reimbursement for hemophilia care products; early emphasis as NHF President on local ch apter involvement; advent of AIDS and of dramatic increase in costs of hemophilia products during tenure as President; aspects of the "hemophilia community(ies)"; questions regarding role and image of NHF regarding relationship of hemophilia to HIV; mix of lay and medical persons in NHF leadership; sources of funding for NHF; education versus research issues at NHF; tripartite leadership model between NHF, Centers for Disease Control (CDC), and Maternal Child Health Bureau (MCHB); "four pillars" of the NHF (staff, chapter leadership, medical leadership, and lay volunteers); need of local chapters to take the next step in dissemination of information; issues of denial in hemophilia community
Hemophilia--History.--United States; Hemophilia--Social aspects; Hemophilia--Political aspects; AIDS (Disease)--History.--United States; Hemophilia in children; Haas, Paul; National Hemophilia Foundation; Centers for Disease Control and Prevention (U.S.)