Blood saga - Hemophilia, AIDS, and the Survival of a Community - Grand Format

Hemophilia is a genetic blod-clotting disorder occurring in mals but transmitted by females. Dubbed " the royal disease " because of its identification with Queen Victoria, the world's most renowned carrier, hemophilia is much more than a disease, as Susan Resnik ably demonstrates in Blood Saga. It is also a social, psychological, and economic experience, and the hemophilia community's story over the past fifty years has meaning for all who are concerned with medical care in the United States. The hemophilia population includes Americans from every socioeconomic and ethnic group, and Resnik's narrative never loses touch with the individuals within that population. Reading of the founders of the National Hemophilia Foundation, which became the wellspring for developing support groups and disseminating information, we sense their despair as well as their determination. Resnik's stories of hemophilia sufferers, and those of their wives and children, some of whom became infected with the AIDS virus from contaminated blood, include experiences of cruel ostracism : children banned from public school, a home set on fire. The hemophilia population initially evolved into what anthropologists call a "communitas," a community of empathy, which was gradually transformed into a politically vocal constituency interacting with the U.S. health care system. In certain ways the hemophilia community is a microcosm of American society, and Resnik's account of that community's adaptation and empowerment provides examples worth emulating as well as pitfalls to avoid. Today gene insertion therapy for people with genetic defects holds the promise of a cure for hemophilia in the near future. At the same time new technologies for prolonging life have raised troubling questions of medical ethics. The hemophilia community's experience of gaining control and then losing it is relevant to our current struggle for health care reform, and Blood Saga holds important lessons for every American.