California Is Showing What’s Possible For Sickle Cell Care

OPINION - August 12, 2026

The Observer

California’s statewide sickle cell clinic network now serves 1,100 adults and has reduced preventable hospitalizations by 20%, offering a model for coordinated, equitable care.

For too long, living with sickle cell disease in California has meant carrying more than the burden of the disease itself. Families have faced severe chronic pain, limited treatment options, repeated hospitalizations, and difficult transitions from pediatric to adult care, often without access to the specialized, coordinated support they need. The result has been unnecessary suffering and, for some, preventable death.

I’ve spent years working alongside patients, families, health care providers, and community health workers to improve the outcomes for people living with sickle cell disease. I have seen firsthand the consequences of underinvestment, but I have also seen what becomes possible when we choose to invest in equitable, comprehensive care. Today, there is a real reason for hope.

That hope began to take shape in 2019, when the state made a long-overdue investment in sickle cell care. Through funding in the Budget Act of 2019, California established the Sickle Cell Centers of Excellence, also known as Networking California for Sickle Cell Care (NCSCC), the first and only statewide network of comprehensive, adult sickle cell clinics. NCSCC has been nothing short of transformational.

Today, NCSCC serves more than 1,100 adults across its 12 clinics and has become a national model for how to deliver comprehensive, coordinated sickle cell care. Since its establishment, NCSCC has made measurable impacts by reducing preventable hospitalizations by 20 percent and cutting total hospital length of stay by half. Just as importantly, it has strengthened the connection between patients and the health care system by increasing access to specialized care, training providers, and integrating community health workers into care teams.

Recently, California reaffirmed its commitment to sickle cell care. Thanks to the support of the California Legislative Black Caucus and Governor Newsom, the state renewed its investment through the Budget Act of 2026, providing NCSCC with additional funds, allowing California’s ability to expand this care to more sickle cell warriors. This sends a clear message to the sickle cell community: people living with sickle cell disease matter and so does building a health care system that works for them.

While this progress is worth celebrating, our work is not done.

Despite being the most common inherited blood disorder in the United States and carrying a life expectancy gap of more than 20 years compared to the general population, SCD has been long overlooked in California policy. Prior to NCSCC, California had never made a policy investment focused on meeting the needs of adults living with sickle cell disease. In the greater Sacramento area, approximately 450 adults and children are living with sickle cell disease, with an estimated 9,000 individuals statewide. Even those figures likely underestimate the true burden because many people remain disconnected from care and are never fully captured in available data.

That gap wasn’t just a policy failure, it was a human one.

Sickle cell disease is chronic, painful, and complex. Effective management often requires coordination among hematologists, primary care providers, pain specialists, behavioral health professionals, and social services. Because sickle cell disease primarily affects Black communities, longstanding inequities in our health care system continue to shape patient experiences and outcomes. Many patients have experienced being dismissed, doubted, or stigmatized, particularly when seeking treatment for pain. Even among health care professionals, there is often a lack of understanding about sickle cell disease.

Over time, repeated experiences like this leave people feeling silenced and isolated.

Community health workers are slowly but surely starting to help shift that dynamic by building trust.

Rooted in the communities we serve, they help patients communicate openly with providers so care reflects the real needs. They build trusted relationships, help patients navigate complex health systems, coordinate services, and ensure patients’ voices are heard throughout their care journey.

This support makes the difference between staying connected to care and falling through the cracks for sickle cell warriors, because sickle cell disease affects each individual differently, and effective care must reflect that.

NCSCC has shown what is possible when we invest in coordinated, culturally responsive care that treats the whole person, not just the disease. What’s been built is more than a program, it’s a blueprint for equity and a commitment to dignity.

The question now is no longer whether change is possible. It’s whether we will continue making the investments necessary to ensure that every person living with sickle cell disease has the opportunity to live a healthier, fuller life.

EDITOR’S NOTE: Mary E. Brown is the president and CEO of the Sickle Cell Disease Foundation (SCDF).