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Strengthening the evidence for maternal and child health programs

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Resnik S. 1994. The social history of hemophilia in the United States (1948-1988): The emergence and empowerment of a community. [New York, NY]: Columbia University School of Public Health, Division of Health Policy and Management, 345 pp.

Annotation: This doctoral dissertation chronicles and analyzes the transformation of hemophilia--an inherited, incurable blood disease--into a manageable chronic condition over the course of 40 years. It uses an ethnographic approach in juxtaposition with documentary analysis and includes a definition of hemophilia and a history of the disease and its treatment. The dissertation is divided into the following chapters: (1) introduction; (2) the dismal era; (3) emerging from the dismal era (1948-1965); (4) the 60s: the beginning of a golden interval; (5) the hemophilia community becomes politicized--the late 60s and early 70s; (6) politics and the blood business; (7) the meaning of the maternal and child health years; (8) the AIDS era begins: the years of confusion and denial (1980-1982); (9) the AIDS era: conflicts between lay and medical leadership emerge (1983-1985); (10) the AIDS era (1985-1988): the hemophilia community rises to the challenge; and (11) conclusions. End notes, references, and a bibliography are provided. The appendices include a glossary; informant discussions, forms, codes, shapers and witnesses; research methods; a list of hemophilia treatment centers and chapters; federal program regions; treatment center outcome data; HIV hemophilia data; the Tri-Agency Model; and the evolution of the U.S. hemophilia culture.

Keywords: AIDS, Hemophilia, Hemotologic disorders, History, Research, Social factors, United States


This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.