Legislation and Funding for Sickle Cell Services, 1972-1982

In 1972, Congress passed the National Sickle Cell Disease Control Act which, for the first time, provided authority to establish education, information, screening, testing, counseling, research, and treatment programs. Under the administration of the National Institutes of Health, comprehensive sickle cell research and treatment centers were established and, under the administration of the Health Services Administration, sickle cell screening and education clinics were established. In the following decade (1972-1982), a flurry of activities occurred in all areas relating to sickle cell disease, including research, treatment, development of teaching and educational materials, public awareness campaigns, as well as community participation and community and patient involvement in program development. Major changes took place in legislation, in funding mechanisms for programs, in interaction of the sickle cell disease constituency population with constituency groups devoted to other categorical genetic diseases, and in the emergence of political activism for sickle cell disease programs and patients. The nature of the recent cuts in funding and their effects on sickle cell programs are discussed.