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NCSCC: Uplifting Sickle Cell Disease as a statewide priority

Updated: Apr 24

The Networking California for Sickle Cell Care Initiative (NCSCC) was developed through advocacy and stakeholder engagement supported by data. Below is a brief history on how this initiative came about.

In 2017, with the celebration of the 60th anniversary of California’s Sickle Cell Disease Foundation (SCDF), California Lobbyist, Tony Gonzalez from the firm London & Gonzalez Advocacy, left extremely impressed by the work of the Community Based Organization (CBO) along with the critical need of the Sickle Cell Disease (SCD) community, and offered pro bono services to support the Foundation’s initiatives. Recognizing a much broader disparity in California beyond the needs of the CBO alone, SCDF expanded its collaborative efforts to partner with the Center for Inherited Blood Disorders (CIBD), to advance an aggressive policy agenda for the SCD community in California.

In 2018, the California Sickle Cell State Action Plan (CA-SCSAP) was developed as a federal grant requirement of the Pacific Sickle Cell Regional Collaborative (PSCRC). In January 2018, individuals with SCD, family members, clinicians, CBOs, advocates, and other partners met in Sacramento, CA to begin a year long process that culminated in the creation of California’s Sickle Cell State Action Plan. The Executive Summary, released December 2018, identified public health priorities and key implementation agencies needed to improve the health of Californians affected by SCD and sickle cell trait. The Action Plan identifies increasing SCD as a statewide priority, strengthening awareness, healthcare services, and policy as the priority areas to enhance access to cost effective care for Californians with sickle cell, and improve health outcomes.

Our goal throughout the process was for providers, agencies and the community to collaboratively implement this collectively developed cohesive plan. The Plan articulates specific goals to ensure that individuals with SCD receive comprehensive, patient-centered, coordinated, accessible, safe and high-quality care, no matter where they live or seek care in California.

Utilizing the California Sickle Cell State Action Plan as a basis for action, SCDF invited its new Lobbyist, Tony Gonzalez, to lead an unprecedented effort to cultivate new financial resources to meet the needs identified within the plan. Team members hosted key meetings strategically led by Tony Gonzalez to educate state policy makers, key caucus Chairs, legislative and budgetary staff, and State Health Department leaders on the needs of Californians with SCD and potential solutions. A critical solution to identified needs was funding to support the development of a statewide clinical and community network of care for adults with SCD, to expand the clinical and community health worker (CHW) workforce, enhance SCD surveillance and strengthen outreach and awareness. Legislation was drafted in January of 2019.

On February 21, 2019, California Assembly member Mike Gipson (D – 64th District, South Los Angeles) introduced a bill AB-1105 into the California legislature that would strengthen SCD services in California. The bill directed the California legislature to make $15 million available to create new services for Californians with SCD in four priority areas over the next three years: a statewide network of adult SC clinics and community organizations supported by local CHWs; workforce expansion, enhance surveillance and promote awareness. The proposed new statewide SCD adult centers will link outpatient care to inpatient services, and provide coordinated, comprehensive, team-based medical, behavioral health, social support, and outcomes monitoring to adults with SCD.

On June 27, 2019, Governor Newsom signed the Budget Act of 2019 (AB 74, Chapter 23) which approved Sickle Cell Disease funding. CIBD and the SCDF were granted $14.4 million to expand access to SCD services over the next three years. The remainder of funds, totaling $600,000.00 was awarded to Tracking California to expand the Sickle Cell Data Collection Program, to better understand long-term trends in diagnosis, treatment, and healthcare access for people with SCD in California.

Through the passage of the Budget Act of 2019, over the next three years, NCSCC will:

1) establish a network of sickle cell disease centers and community organizations in counties where the largest numbers of adults with SCD live to provide access to specialty care and improve quality of care for adults with SCD;

2) support workforce expansion, among both clinicians and community health workers, to enhance care coordination;

3) expand surveillance to monitor disease prevalence, healthcare utilization, complications and costs; and

4) conduct outreach and awareness on SCD.

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