CA care for sickle cell patients works. Don’t drop it

By Mary E. Brown, especially for CalMatters

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

Doctors at the time questioned his pain. The nurses misread his symptoms. And his family watched helplessly as he fought for treatment, while he just tried to survive.

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

California’s former politicians faced with cases like Reed’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 California Network for Sickle Cell Carea first-of-its-kind network of 12 specialty clinics serving adults living with sickle cell disease. With the subsidy ending soon, the future of the network is uncertain.

Sickle cell disease is a hereditary blood disorder mainly affects blacksalthough on rarer occasions Hispanics may have it. It can to affect an organ, to be very painful and shorten life expectancy.

Since its launch five years ago, Networking California has served more than 1,200 patients across the state, including many who haven’t seen a specialist in years. To the state the investment pays off in healthier residents and smarter spending. Emergency department visits decreased by 11%, hospitalizations by 20%, and length of hospital stay by nearly 50%.

These are not just numbers. They are real people who are empowered to reclaim their lives by properly managing their illness and staying out of the hospital. Hospital admissions and emergency room 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 participating clinics.

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

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

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

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

The funding that created Networking California has ended. Without sustained investment, clinics may be forced to reduce services or close, the positions of community health workers are at risk, and patients may once again be sent back to emergency departments, the least effective place to treat a lifelong illness.

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

How can state leaders abandon a program they have championed — one that has become model for other countries and on Centers for Medicare & Medicaid Services? Governor Gavin Newsom, members of the California Legislative Black Caucus and other state leaders must act.

We know what works. We’ve seen the results. Now is the time to ensure that this lifeline stays in place. Californians living with sickle cell are tired of waiting, tired of suffering and tired of feeling forgotten.

This article was originally published on CalMatters and is republished under Creative Commons Attribution-NonCommercial-No Derivatives license.