California’s care for sickle cell patients finally works. We can’t abandon it now

As a teenager Rialton Reid was rushed to a Los Angeles emergency room in excruciating pain. Not only was he battling a sickle cell crisis; he was fighting a system unprepared to care for him. 

The doctors at the time questioned his pain. Nurses misread his symptoms. And his family watched helplessly as he fought for treatment while just trying to survive.

Since then health providers’ understanding of sickle cell has improved, changing everything. Now Reid, 27, helps other families of sickle cell patients navigate health care in Los Angeles County. 

Once California’s policymakers confronted cases like Reid’s — the stories behind the statistics — their shock turned into action. They generated new funding, new health care networks and new hope. 

The state in 2019 invested $15 million to establish Networking California for Sickle Cell Care, a first-of-its-kind network of 12 specialized clinics serving adults living with sickle cell. Because the grant is ending soon, the network’s future is uncertain. 

Sickle cell disease is an inherited blood disorder mainly affecting Black people, although in rarer cases Latino people can have it. It can affect any organ, be severely painful and shorten life expectancy.

Since its launch five years ago, Networking California has served more than 1,200 patients around the state, including many who hadn’t seen a specialist in years. The state’s investment is paying off in healthier residents and smarter spending. Emergency department visits have fallen 11%, hospitalizations by 20% and the length of hospital stays by nearly 50%. 

Those aren’t just numbers. They’re real people who are being empowered to reclaim their lives by properly managing their disease and staying out of the hospital. Hospital admissions and emergency visits are among the most expensive forms of health care.

By helping patients access preventive care, manage complications and avoid sickle cell crises, Networking California saves taxpayer dollars. 

Equally important, this investment is maintaining transparency and accountability. Networking California tracks treatment outcomes, health care utilization and patient engagement across all its participating clinics. 

A cornerstone of Networking California’s success is its community health workers, trusted frontline professionals who serve as lifelines between patients and providers. They schedule appointments, arrange transportation, check in after hospitalizations and reconnect patients who haven’t had care for years. Many of them come from the same communities as their patients, helping rebuild trust where it once was broken. 

This trust can be transformative. Ask patients like Ophelia Williams, who is bucking the odds. 

In California, the average life expectancy with sickle cell is 45 years old. Williams is 49. The mother of five lives in San Diego and accesses specialized care and support through UC San Diego Health to manage sickle cell disease. 

She’s a living example of what Networking California can accomplish. But such progress is in jeopardy. 

The funding that established Networking California has ended. Without sustained investment, clinics may be forced to reduce services or close, community health worker positions are at risk and patients could once again be pushed back to emergency rooms, the least effective place to manage a lifelong disease.

Networking California is saving lives by providing the timely, life-saving care sickle cell patients have needed for decades.

How can state leaders walk away from a program they championed — one that has become a model for other states and the Centers for Medicare & Medicaid Services?  Gov. Gavin Newsom, members of the California Legislative Black Caucus and other state leaders must act. 

We know what works. We have seen the results. Now it’s time to ensure this lifeline remains in place. Californians living with sickle cell are tired of waiting, tired of suffering and tired of feeling forgotten.