Maternal and child health initiatives in sickle cell disease

Maternal and Child Health (MCH) Sickle Cell Disease Initiatives began in the 1960s. Federal MCH programs developed and disseminated sickle cell disease (SCD) educational materials nationally. Following passage of the National Sickle Cell Anemia Control Act in 1972, the MCH program, with initial funding from the National Institutes of Health, provided support for community based scd clinics to conduct testing, counseling, and education. In the mid 1980s, the Federal MCH program supported the development and implementation of State newborn screening programs for scd. By 1990, 30 States and jurisdictions had implemented programs with direct Federal support; currently all States mandate universal screening for scd.

MCHB currently has two program initiatives related to scd:

1. The Sickle Cell Disease and Newborn Screening Program provides grants to fund 17 community-based projects and a national coordinating center with the Sickle Cell Disease Association of America. These projects are designed to enhance follow-up services for infants who are carriers or screen positive for scd and support community-based efforts to provide scd-related education and counseling. 2. The Sickle Cell Disease Treatment Demonstration Program provides grants to enhance the prevention and treatment of scd. It is designed to improve and expand patient and provider education and the continuity and coordination of service delivery for individuals with scd.