California Sickle Cell Action Plan

On February 21, 2019, California Assembly member Mike Gipson (D – 64th District, South Los Angeles) introduced a bill into the California legislature that would strengthen Sickle Cell Services in California.

The bill directs the California legislature to make $15 million available to create a variety of new services for Californians with sickle cell disease (SCD) over the next three years. The new SCD adult center services will link outpatient care to inpatient care, and provide coordinated, comprehensive, team-based medical, behavioral health, mental health, social support, and surveillance to adults with sickle cell disease.

They will provide expanded access to new therapeutic agents and care.

 

The bill highlights the needs of Californians with Sickle Cell that are outlined in the California Sickle Cell Action Plan.

To read the entire bill, go to: http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201920200AB1105

To get involved in supporting this bill please send your name, city where you live, organizations you’re affiliated with, and email address to: info@c3dibd.org

Summary of the Bill:

Summary for AB-1105 Sickle Cell Disease (SCD) (2019-2020)

AB1105 Sec. 3: $15 Million dollars for the purposes of implementing and administering the Sickle Cell Disease (SCD) Center pilot program established in Section 125040 of the Health and Safety Code  

 

The purpose of this legislative appropriation is to decrease the mortality and morbidity for Californians with Sickle Cell Disease through increased access to a network of SCD clinics, expansion of healthcare workforce, strong collaboration with community and patient advocates, and ongoing surveillance to document the burden of disease. 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.

 

Joining with well-established community based organizations (CBO), the new SCD subspecialty clinics implemented through this bill, will deliver a full spectrum of multidisciplinary services from outpatient to inpatient care when needed, and provide coordinated, comprehensive, team-based medical, behavioral and mental health, social support to adults with sickle cell disease. The bill also requires the State Department of Public Health (DPH) to collaborate with the network to enhance statewide surveillance of sickle cell disease, especially life expectancy which is one of the shortest in the nation.

 

Using the highly effective spoke and hub model, community based SCD clinics (spokes) connect with centers of excellence (hubs) to provide full range of services for all patients throughout the state. Preventative and coordinated care for SCD keeps patients out of the emergency room (ER) and hospital, and leading healthy productive lives.  Preventable Sickle Cell Disease 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 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 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 five new centers funded through this appropriation, along with primary care providers and CBOs will expand the SCD network so that it can now serve local geographic areas and surrounding counties based on highest need and demographics. 

 

Transition of young adults from pediatric centers is severely limited or absent due to the lack of adult SCD subspecialty Centers.  All patients should have access to chronic care coordination closer to their home, while still providing access to state of the art treatment and potentially curative therapy.  The promise and hope for cure is now a possibility in California’s excellent medical institutions. This SCD network includes the UC stem cell ALPHA centers of excellence to facilitate treatment and access to advances which will ameliorate organ damage or even replace sickle cells via stem cell and gene therapy. 

 

Summary: This network, with the additional 5-6 centers, will provide the critical infrastructure to assure that Californians with SCD, particularly adults, are receiving knowledgeable and timely care, excellent interchange with primary care providers through telemedicine, access to community health workers to reduce social barriers to care, and documented improved health outcomes.

Original Document Found Here: https://ca-actionplan.pacificscd.org/wp-content/uploads/2019/04/one-page-Summary-for-AB-422.docx