New York's Experience

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In 1964, the New York State Public Health Law, §2500a, set the stage for mandatory newborn screening. By 1978, testing was already under way when the last of the total of eight diseases was added. Screening for homozygous sickle cell disease was included in 1975. Specimens submitted from 1975 to 1984 totaled nearly 2.5 million, and these specimens were sent to four different laboratories in New York state. New York City, with the largest population of newborns, sent the largest proportion of specimens (1.1 million). Although testing was occurring, it was not until 1979 that citywide follow-up was established. Follow-up efforts were coordinated through the New York City Department of Health in cooperation with 52 hospitals. Of these hospitals, 25 received New York state funding for the provision of genetic services, which included testing and counseling for parents of children whose test results were positive for trait or disease. A cooperative effort was set up between the New York City Department of Health and health providers, who agreed to provide follow-up for newborns with all hemoglobinopathies at their respective hospitals. In cases of sickle cell disease, efforts were made to obtain second specimens from affected infants. In cases in which this was difficult, New York City Department of Health aids visited the home and obtained the specimen, counseled the parents, and arranged for further follow-up. Other cooperative efforts occurred when various genetic or sickle cell centers came together and organized committees. Two major committees, the Sickle Cell Advisory Committee, and its executive arm, the Implementation Committee, in which all providers of genetic services throughout the state are represented, met to discuss statewide problems, to identify needs, and to formulate policy.