History of Sickle Cell Disease (SCD) Care:
- SCD care characterized by disparities in resources and outcomes since identified in the West in 1910
- Political activism of the Black Panther Party catalyst for community support, public funding, and newborn screening
- Northern California Comprehensive Sickle Cell Center established 1975
- Programs in Oakland and at San Francisco General functioned as one center, with NHLBI funding
- NHLBI funding abruptly ceased in 2007
- Northern California Comprehensive Sickle Cell Center has struggled under issues of structural racism
History of Northern California Comprehensive Sickle Cell Center:
- NIH Center of Excellence since 1973
- Committed to improving patient outcomes through understanding the molecular and biologic factors affecting the pathophysiology of SCD, including development of new therapeutic interventions and challenging the health disparities associated with treatment
- Goal: Consolidating UCSF campuses into one integrated UCSF Sickle Cell Center of Excellence
- Joint recruitment of Dr. Shaina Willen
- The principal leadership institution for SCD clinical care, translational research, screening and education in 13 states:
- Co-PI of NIH “Recipient Epidemiology and Donor Evaluation Study-IV-Pediatric” (REDS-IV-P) focusing on hemoglobinopathies and iron
- The California Sickle Cell Action Plan Initiative with UCSF-BCHO and the Northern California Hub Awarded in 2020; $898,000 annually.
- SCD Treatment Demonstration Program. NIH multi-center trial organizing regional emergency rooms for standardized care
- Core biology lab preclinical and in vivo cell function, Lorca scan
- Principal author site of two FDA-approved targeted therapies
- Intensive sickle cell boot camp education training program for health workers throughout the U.S.