Networking California for Sickle Cell Care (NCSCC), also known as the Sickle Cell Centers of Excellence, was developed through advocacy, stakeholder engagement, and data-driven decision-making. Below is a brief history of how this groundbreaking initiative came to be.

In 2017, during the California Sickle Cell Disease Foundation’s (SCDF) 60th anniversary celebration, California lobbyist Tony Gonzalez of London & Gonzalez Advocacy was deeply impressed by the organization’s work and the critical unmet needs within the sickle cell disease (SCD) community. Motivated by these challenges, he offered his services pro bono to support the Foundation’s policy initiatives. Recognizing that the disparities affecting people with SCD extended far beyond the needs of any single community-based organization (CBO), SCDF expanded its collaborative efforts by partnering with the Center for Inherited Blood Disorders (CIBD) to advance an ambitious statewide policy agenda on behalf of Californians living with SCD.

In 2018, the California Sickle Cell State Action Plan (CA-SCSAP) was developed as part of a federal grant requirement for the Pacific Sickle Cell Regional Collaborative (PSCRC). In January 2018, individuals living with SCD, family members, clinicians, community-based organizations, advocates, and other stakeholders gathered in Sacramento to begin a year-long planning process. This effort culminated in the release of the Action Plan’s Executive Summary in December 2018.

The Action Plan identified key public health priorities and implementation partners needed to improve the health and well-being of Californians affected by SCD and sickle cell trait. It established SCD as a statewide health priority and outlined strategies to strengthen awareness, healthcare services, and public policy in order to expand access to cost-effective, high-quality care and improve health outcomes.

Throughout the planning process, the overarching goal was to create a cohesive framework that providers, agencies, and community partners could collaboratively implement. The Plan articulated specific objectives to ensure that individuals with SCD receive comprehensive, patient-centered, coordinated, accessible, safe, and high-quality care, regardless of where they live or seek treatment in California.

Using the California Sickle Cell State Action Plan as a blueprint for action, SCDF invited Tony Gonzalez to lead an unprecedented effort to secure new financial resources to address the needs identified in the Plan. Through a series of strategic meetings, advocates educated state policymakers, legislative and budget staff, caucus leaders, and California Department of Public Health officials about the challenges faced by Californians with SCD and the opportunities to improve care.

One of the key solutions identified was the creation of a statewide clinical and community-based network of care for adults with SCD. Proposed investments included expanding the clinical and community health worker (CHW) workforce, strengthening SCD surveillance activities, and increasing public outreach and awareness. Legislative language supporting these priorities was drafted in January 2019.

On February 21, 2019, California Assemblymember Mike Gipson (D–64th District, South Los Angeles) introduced Assembly Bill 1105 (AB 1105) to strengthen SCD services across California. The bill proposed a $15 million investment over three years to support four priority areas: development of a statewide network of adult sickle cell clinics and community organizations supported by community health workers; workforce expansion; enhanced surveillance and data collection; and increased public awareness and education.

The proposed statewide network of adult SCD centers was designed to connect outpatient and inpatient services while delivering coordinated, comprehensive, multidisciplinary care, including medical, behavioral health, social support, and outcomes monitoring services.

On June 27, 2019, Governor Gavin Newsom signed the Budget Act of 2019 (AB 74, Chapter 23), which included funding to strengthen sickle cell disease services throughout California. Through this appropriation, CIBD and SCDF received $14.4 million to expand access to SCD care over a three-year period. The remaining $600,000 was awarded to Tracking California to expand the state’s Sickle Cell Data Collection Program and improve understanding of long-term trends related to diagnosis, treatment, healthcare utilization, and access to care for individuals living with SCD.

In July 2024, California reaffirmed its commitment to the sickle cell community when Governor Newsom signed the Budget Act of 2024 (AB 107). The budget included an additional one-time appropriation of $5 million to the California Department of Public Health in support of NCSCC. This funding enabled the Network to continue providing comprehensive services to adults living with sickle cell disease, including specialty care, pain management, care coordination, and behavioral health services.

Building on the success of NCSCC and the state’s earlier investments in sickle cell disease care, Governor Gavin Newsom signed the Budget Act of 2026 (AB 109) in July 2026, providing a $6 million appropriation in Fiscal Year 2026–27 to the California Department of Public Health for NCSCC. This funding marks the beginning of a landmark five-year, $30 million commitment by California to increasing access to high-quality, comprehensive care for adult Californians living with sickle cell disease and to ensure the long-term sustainability of the state’s innovative network of care.

Through the passage of the Budget Acts of 2019, 2024, and 2026, NCSCC has:

1. Established a statewide network of sickle cell disease centers and community organizations in counties with the largest populations of adults living with SCD, improving access to specialty care and enhancing quality of care;
2. Expanded the healthcare workforce through investments in clinicians and community health workers to improve care coordination and patient support;
3. Strengthened surveillance efforts to monitor disease prevalence, healthcare utilization, complications, and costs; and
4. Increased outreach, education, and awareness regarding sickle cell disease throughout California.

Today, California stands as a national leader in advancing sickle cell disease care, with initiatives such as NCSCC serving as a model for comprehensive, community-centered, and data-driven systems of care that improve outcomes for individuals living with sickle cell disease.