Join the First Annual CA SCD Advocacy Day

Appropriate $15 Million Over Three Years (FY 2026–2029) to Sustain and Expand Cayenne Wellness Center Services

We respectfully request an appropriation of $15 million over three years (FY 2026–2029) to sustain and expand community-based sickle cell disease services in California, building on the State’s prior $10 million investment in SCD education, outreach, mental health, and care coordination. These resources currently support a network of community-based organizations across the state and have helped fill critical gaps in care for individuals and families living with SCD.

Cayenne Wellness Center plays a key role in delivering services that hospitals and medical centers alone cannot provide, including mental health counseling, transportation assistance, childcare and respite care, education and statewide awareness campaigns (such as the Sickle Cell Trait Awareness Campaign), monthly support groups, advocacy, and comprehensive assistance with housing, food, and utilities.

This three-year investment will ensure continuity of these essential services, strengthen the statewide network of community-based providers, and allow programs to be sustained and expanded to meet ongoing and unmet needs. Continued funding is critical to maintaining access to life-saving, culturally responsive, community-based support for Californians living with sickle cell disease.

Talking Points:

• Senator Webber-Pierson previously championed our funding request, securing state support for Cayenne Wellness Center. As we enter this new funding cycle, we are seeking a new legislative champion to carry this request forward, as Dr. Akilah-Weber is unable to serve in that role due to her leadership position.
• The budget appropriations for sickle cell disease primarily fund existing hospital facilities. However, essential wraparound, life-saving services are underfunded. CWC currently fills this gap.         
• Patients with sickle cell disease who have the highest Social Vulnerability Index scores—defined by factors such as socioeconomic status, transportation access, and minority status—face nearly five times greater risk of death than patients with the lowest scores (Tan et al. 2024). 
• Children with SCD who live in food deserts and lack reliable transportation experience higher rates of hospitalization and acute care utilization—even when receiving evidence-based therapies (Khan et al. 2024).
• Depression rates (26%) and depressive symptoms (32%) among individuals with SCD far exceed those of the general U.S. population (9.5%) (Jenerette, Funk, and Murdaugh 2005).
• Total health care costs for adult SCD patients with depression were more than double those of SCD patients without depression (Adam et al. 2017)
• The majority of inpatient SCD care in California is financed by public programs. Approximately 70% of individuals with SCD are covered by Medi-Cal, California Children’s Services (CCS), and/or other state-run programs, either alone or in combination with Medicare (Tracking California 2025). As a result, the state has a direct fiscal interest in care models that improve outcomes and reduce avoidable hospital utilization.
• More than 80% of California counties have at least one resident living with SCD (Tracking California 2025).

Require Statewide Adoption of Evidence-Based Sickle Cell Disease Guidelines and Strengthen Hospital Accountability Across California

Care for Sickle Cell Disease (SCD) in California remains inconsistent and inequitable. Many hospitals rely on internal protocols that vary widely and are often influenced by provider bias, gaps in training, or outdated practices. These inconsistencies result in preventable complications, prolonged hospitalizations, avoidable deaths, and unnecessary suffering for individuals living with SCD and their families.

California already requires standardized, evidence-based protocols for conditions such as trauma, stroke, perinatal care, and STEMI to ensure timely and high-quality treatment. Sickle Cell Disease deserves the same level of statewide consistency, accountability, and clinical rigor.

We are calling on the State of California to require all acute care hospitals to adopt and implement the National Heart, Lung, and Blood Institute (NHLBI) and American Society of Hematology (ASH) Guidelines for the management and treatment of Sickle Cell Disease across emergency, inpatient, and outpatient settings.

This statewide approach should include:

Mandatory adherence to NHLBI and ASH evidence-based clinical guidelines for SCD care

Formal partnerships between hospitals and California-based Sickle Cell Disease community-based organizations (CBOs) to support culturally responsive care, patient navigation, care coordination, and linkage to critical wraparound services

Ongoing provider education through required CEUs/CMEs, including Sickle Cell 101, evidence-based pain management, implicit bias training, and emerging therapies

Standardized pain-crisis response protocols to reduce delays in care and unnecessary suffering

Integrated patient and family support services, including mental health services, social supports, and effective transition-of-care planning

By requiring consistent, evidence-based SCD care statewide, California can reduce disparities, improve patient outcomes, and save lives—ensuring that individuals with Sickle Cell Disease receive timely, expert, and compassionate care regardless of where they seek treatment.

Talking Points:

• Evidence-based clinical guidelines for sickle cell disease management, including pain crisis care, already exist. The National Institutes of Health’s NHLBI and the American Society of Hematology (ASH) have published nationally recognized standards; however, adoption and implementation across hospitals and medical centers remain inconsistent.
• There is significant variation in how SCD pain crises are managed across children’s hospitals in the United States (Eltorki et al. 2024).
• Patients with SCD experience longer wait times for analgesia (pain medication) in emergency departments compared to patients with other painful conditions, despite higher arrival pain scores and triage acuity levels (Lazio et al. 2010).
• Most individuals with SCD presenting to the emergency department with a vaso-occlusive crisis (VOC) are not triaged according to national guidelines, resulting in delayed pain management (Abu Haimed et al. 2025) 
• California’s regionalized system for urgent heart conditions (such as ST-elevation myocardial infarction, STEMI) has been associated with improved access to appropriate hospitals and more timely treatment (Shen, Krumholz, and Hsia 2021). National studies further show that states with formal hospital destination and accountability policies achieve significantly faster, guideline-recommended care (Green et al. 2018). Together, these findings demonstrate that state-led designation and coordination frameworks can reduce variation in care and improve outcomes—an approach that could be adapted to promote more consistent and equitable care for individuals living with sickle cell disease statewide.