This legislation establishes a new federal grant program to create "Sickle Cell Disease Treatment Centers" using a hub-and-spoke healthcare network model. The program would fund medical hubs (hospitals, clinics, or university health centers) that coordinate with smaller spokes (primary care providers, federally qualified health centers, infusion centers) and partner with community-based organizations to provide comprehensive, coordinated care for sickle cell disease patients throughout their lives. Eligible entities would use federal grants to support integrated care teams, telehealth services, genetic counseling, pain management, mental health services, and help patients navigate insurance and address barriers like food insecurity and transportation. The bill also establishes a National Sickle Cell Disease Coordinating Center to oversee the program, develop treatment standards, and coordinate data collection with the Centers for Disease Control and Prevention. The legislation prioritizes funding for regions with high sickle cell prevalence and historically black colleges and universities, and requires the Secretary to report to Congress on patient outcomes within three years and every five years thereafter. While the bill authorizes "such sums as may be necessary" for fiscal year 2025 and beyond, it specifies that 70 percent of appropriated funds go to hub-and-spoke networks, 20 percent to community organizations, and 5 percent each to the coordinating center and CDC data collection efforts.
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