Four In Five Californians With Sickle Cell Disease Have Relied On Medi-Cal, First Statewide Report Finds

For Immediate Release: Media Availability
Contact: Renate Myles/Katie Mullan

What:

Oakland, CA—Four in five Californians with sickle cell disease (SCD) relied on Medi-Cal at some point between 2021 and 2023, but fewer than half stayed enrolled continuously, according to California’s first statewide SCD surveillance report released today. The report identifies more than 7,000 Californians living with SCD, 78% of them African American, and describes the care they receive. It arrives months before new federal Medi-Cal work requirements take effect, rules that could widen those gaps unless people with SCD can readily verify their exemptions. The report was produced by the California Sickle Cell Data Collection program of Tracking California, a program of the Public Health Institute.

The report also found:

• Adults lose access to specialists. Three in four Californians with SCD are adults, but hematologist visits fall from 73% of children age 10 and under to 26% of people in their twenties and 7% of those 60 and older.
• Heavy reliance on emergency care. Californians with SCD visited the emergency department at more than four times the rate of all Californians. Thirty-three percent of people with SCD discharged from the hospital returned within 30 days, compared with 15% of Californians overall.
• Pregnancy carries substantial risk. Based on hospital data, nearly one in three pregnant Californians with SCD between 2019 and 2023 experienced severe maternal morbidity, most often involving a sickle cell crisis or blood transfusion.

SCD is an inherited blood disorder affecting multiple body systems throughout life. People with SCD have a life expectancy about 20 years shorter than the general population, a gap shaped by barriers to health care and other resources. The report identifies opportunities to improve outcomes through better chronic case management, access to specialty care and stronger care coordination.

County-level data is available for Los Angeles, San Bernardino, Riverside, Alameda and Sacramento counties, which together account for two-thirds of Californians with SCD.

Why now:

Two federal changes take effect early next year: work requirements begin January 1, 2027; six-month eligibility renewals begin March 1, 2027. Medical exemptions depend on federally defined categories, including serious and complex medical conditions and disabilities that significantly impair activities of daily living, rather than a diagnosis alone. This report highlights how important Medi-Cal is to this population. California is working on addressing the federal exemption requirements.

California has been investing in closing gaps in SCD care. The Budget Act of 2026 (AB 109) provided $6 million in FY 2026-27 for Sickle Cell Centers of Excellence, the first of a five-year, $30 million commitment to adult SCD care. This builds on Networking California for Sickle Cell Care, which was established in 2019 and now operates in seven local health jurisdictions. The state has also joined the federal Cell and Gene Therapy Access Model, which expands Medicaid access to new sickle cell gene therapies. This report sets a baseline to measure how these efforts will affect people with SCD.

Who:

Jhaqueline Valle Palominos, MPH, Program Director, California Sickle Cell Data Collection Program of Tracking California, part of the Public Health Institute, is available for interviews. To schedule an interview, contact media@phi.org.

Report:

California Sickle Cell Data Collection Program. Sickle Cell Disease in California: A CA-SCDC Surveillance Report. Tracking California, Public Health Institute; October 2026. Available at: https://cascdc.org/2026-surveillance-report/

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Tracking California is an independent public health surveillance and research program at the Public Health Institute. For nearly 25 years, Tracking California has collected, analyzed, and made publicly available data on the health effects of environmental exposures across California. The program is committed to community based participatory research. For information, visit www.trackingcalifornia.org.

The Public Health Institute is a national independent nonprofit that advances the health and wellbeing of all people and communities, particularly those facing the greatest barriers. Rooted in 60 years of public health experience, PHI moves ideas into action through practice, policy, research and community engagement, while serving as the operational backbone for more than 40 programs delivering evidence-based solutions to complex health challenges. For more information, visit www.phi.org.