The purpose of the Networking California for Sickle Cell Care project is to decrease the mortality and morbidity for Californians with Sickle Cell Disease through increased access to a Regional network of adult SCD skilled subspecialty clinics.
In California, the median age of death for individuals with SCD is 43 years old, which is well below the median age of death for individuals with SCD nationwide at 61 years and the U.S. general population at 84.5 years.
This tragic reality can be impacted with the expansion of the healthcare workforce and outreach and education efforts in strong collaboration with community and patient advocates, and ongoing surveillance to document the burden of disease. Preventative and coordinated care for SCD keeps patients out of the emergency room (ER) and hospital, and leading healthy productive lives.
California lacks knowledgeable providers, intentionally linked in a regional hub and spoke care model for adults with SCD.
In the absence of SCD clinics with infusion centers, preventable pain crises and other complications frequently lead to ER visits and hospitalizations at an estimated cost of $2.4 billion per year in this country. In California a conservative estimate based on the Office of Statewide Health Planning and Development (OSHPD) data for 2014-16, indicates the charges for hospitalization and ER visits for adults with SCD exceeded $226 million. Implementation of the SCD network of regionalized care will have a major impact on California’s healthcare budget and will greatly improve the quality of life for its citizens with Sickle Cell Disease.
This network, working with California’s healthcare institutions of higher learning, will expand the much-needed healthcare workforce of clinicians who are knowledgeable about SCD diagnosis and treatment.
These new clinics and the SCD subspecialty consortium will collaborate with community based organizations (CBO) or offer satellite community programs to reduce social determinants that impede health equity, such as transportation, housing, or translation services, that block access to SCD care and innovative therapies. Importantly, at least 5 new centers funded through this appropriation, along with primary care providers and CBOs will expand the SCD network so that it can serve local geographic areas and surrounding counties based on highest need and demographics.
We are visiting clinics to determine the compassionate staff, resources and commitment of each sight to create a center of excellence for preventative, guideline driven SCD outpatient care. We are simultaneously meeting with leadership in the appropriate Medi-Cal managed care organizations to partner on assuring that these designated centers in the NCSCC will be sustainable and open to all SCD patients and families for many years to come.