The Sickle Cell Disease Association of America, Inc. (SCDAA) was awarded funding from the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), Division of Services for Children with Special Health Needs/Genetic Services Branch (DSCSHN/GSB) to serve as the Technical Assistance Center (TAC) for the Newborn Screening Follow-up Program. SCDAA will provide support for up to 17 Community Based Organizations (CBOs) to work with state collaborators that will improve the care and reduce rates of individuals with sickle cell disease (SCD) who are “lost to follow-up” by supporting efforts of sickle cell disease education and service coordination. SCDAA will serve as the National Coordinating Center to provide technical assistance to these CBOs in an effort to create partnerships, collaborations and networks to increase services. This program will enhance the sickle cell CBOs’ ability to ensure that individuals diagnosed with SCD receive appropriate follow-up services including counseling, education, access to a medical home, and other support services. The primary population focus will be families of individuals identified with sickle cell disease through newborn screening; however, all individuals with SCD will be included.
The goal of this program is to ensure that individuals diagnosed with sickle cell disease receive appropriate follow-up services including counseling, education, access to a medical home, and other support services by supporting CBOs focused on SCD.
The CBO sub-awardee will report annually on the following program objectives:
- Train at least 150 Community Health Workers (CHWs) in SCD to work in selected health care locations in up to 17 states.
- Increase by 30% the number of partnerships (both formal and informal) among CBOs and hospitals, health systems, state public health departments, primary care providers, Federally Qualified Health Centers (FQHCs), family organizations, and others.
- Ensure at least 15,000 individuals with SCD are served by CBOs and receive care in a patient-centered medical home.