About NCSCC
The Networking California for Sickle Cell Care Initiative (NCSCC)
NCSCC was developed through advocacy and stakeholder engagement supported by data. Below is a brief history on how this initiative came about.
In 2017, during the 60th anniversary of California's Sickle Cell Disease Foundation (SCDF), California Lobbyist Tony Gonzalez from London & Gonzalez Advocacy was impressed by the work of the Community Based Organization (CBO). Recognizing the broader disparity in California, SCDF expanded its collaborative efforts by partnering with the Center for Inherited Blood Disorders (CIBD) to advance an aggressive policy agenda for the SCD community in California.
In 2017
In 2018, the California Sickle Cell State Action Plan (CA-SCSAP) was developed to improve the health of Californians affected by sickle cell disease (SCD) and sickle cell trait. The plan identified priority areas such as increasing SCD awareness, improving healthcare services, and enhancing policy to ensure access to cost-effective care. SCDF invited Lobbyist Tony Gonzalez to secure financial resources based on the plan. Meetings were held to educate policymakers and state health leaders on the needs of Californians with SCD. Critical solutions, including funding support, clinical network development, and increased outreach, were identified. Legislation was drafted in January 2019.
In 2018
In 2019, California introduced a bill to strengthen SCD services, allocating $15 million over three years for new services. The bill aimed to establish a network of adult SC clinics, expand the workforce, enhance surveillance, and promote awareness. Subsequently, the Budget Act of 2019 was signed, granting $14.4 million for expanding access to SCD services and $600,000 for Sickle Cell Data Collection. The focus is on establishing SCD centers, supporting workforce expansion, expanding surveillance, and conducting outreach and awareness programs.