What California’s Historic Sickle Cell Investment Means for Black Patients and Families 

For many people in the sickle cell disease (SCD) community, the journey has been full of challenges. These challenges come not just from the disease, but also from a healthcare system that has often overlooked or mistreated them. Now, things are starting to improve.

California Governor Gavin Newsom has signed the Budget Act of 2026 (AB 109), which sets aside $30 million over five years for Networking California for Sickle Cell Care (NCSCC). The funding starts with $6 million for the 2026-27 fiscal year and will support the California Department of Public Health and the state’s Sickle Cell Centers of Excellence.

This funding is a big win for the more than 1,000 patients who get care through the NCSCC, a program created by and for the community. By moving away from repeated emergency room visits and focusing on coordinated, ongoing care, the program has already made a difference. Adults with SCD in the program now have a median life expectancy of 54 years, up from 43 years.

“California has shown the rest of the country what’s possible when adults living with sickle cell disease, who have historically faced gaps in care during their transition from pediatric to adult health services, have access to coordinated care,” said Diane Nugent, MD, Founder and President, Center for Inherited Blood Disorders. “I’ve seen firsthand the difference that access to specialized, comprehensive care makes. It means better pain management, stronger behavioral health support, fewer medical crises, and, most importantly, patients who feel seen, heard, and cared for. This investment allows us to continue building on a model that is already improving lives, helping increase the median life expectancy  of adults living with sickle cell disease from 43 to 54 years, preventing crises, and setting the standard for sickle cell care nationwide.”

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Addressing Racial Health Disparities

Sickle cell disease affects Black and African American communities the most, with about 1 in 365 births. This investment is an important step toward fixing long-standing racial health gaps.

• Combating Medical Bias: In the past, Black patients with SCD often had their pain dismissed. By supporting specialized Centers of Excellence, California is funding training that replaces outdated biases with care grounded in evidence, compassion, and cultural respect.
• Preventing Crises: Specialized care means patients do not have to rely as much on emergency rooms, which are not the best places to manage complex, long-term illnesses. By focusing on prevention and treating the whole person, the state is helping patients avoid painful crises before they become emergencies.

Empowering the Patient Voice

At the heart of this success is a commitment to the people who need it most. Mary Brown, President and CEO of the Sickle Cell Disease Foundation, emphasizes that the program’s growth has been defined by one thing: listening.

“We are deeply grateful to Governor Newsom, the California Legislature, and our legislative champions for recognizing the importance of continuing to invest in the sickle cell community,” Brown said. “… Every step of its growth has been guided by the voices and lived experiences of the people it serves, a culturally responsive model that prioritizes the whole person, not just the disease. This investment recognizes what we’ve known all along, that lasting progress comes from supporting trusted partnerships, local expertise, and community leadership that has built this model from the ground up.”

For thousands of Californians living with sickle cell disease, this investment is more than just a budget item. It is a promise that they will finally be put first, listened to, and cared for in ways that respect their needs.

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About Networking California for Sickle Cell Care

Networking California for Sickle Cell Care (NCSCC) was developed through advocacy and stakeholder engagement supported by data. Learn more by visiting http://www.sicklecellcare-ca.com/

About the Center for Inherited Blood Disorders

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The Center for Inherited Blood Disorders (CIBD) has cared for hundreds of children and adults in Southern California, offering a  safety net clinic that provides health care services specifically to patients with inherited blood disorders. CIBD has been able to increase access to care for those who are economically challenged by providing medical care regardless of ability to pay. CIBD is also a national leader in directing federal initiatives to promote regional blood disorder networks that provide team-based clinical care and uniformly track health outcomes. Learn more by visiting www.cibd-ca.org.

About the Sickle Cell Disease Foundation

The Sickle Cell Disease Foundation (SCDF) was incorporated in 1957 and is the first and oldest Sickle Cell Disease community based organization of its kind in the nation. As the only organization in California approved to provide Hemoglobin-Trait

Counseling Services and direct the Sickle Cell Educator/Counselor Certification Training Course, SCDF provides life-enhancing education, services and programs for individuals living with Sickle Cell Disease. SCDF broadens public awareness, delivers effective advocacy initiatives, and promotes innovative therapies to ultimately find a cure. Learn more by visiting www.scdfc.org.