Davis Vanguard
By Keyasia Currie
“I don’t want to go back to the hospital.”
I’ve lost count of how many times a patient has said that to me. They didn’t say it because they weren’t in pain or because they didn’t need care, it was because they didn’t think anyone would believe them.
Lately, I’m hearing that phrase less often. Sickle cell disease care is changing for the better, and there’s a specific reason for that: community health workers.
When we think of health infrastructure, we often think of hospitals, clinics, specialists, and breakthrough treatments. For individuals living with sickle cell disease, having someone to help them navigate the health care system, rebuild trust after years of being dismissed, and stay connected to the care they deserve is just as essential as the medical care itself. Without that guidance, trust, and connection patients suffer, and even the best health care system can’t effectively deliver the care it’s meant to provide.
For decades, adults living with sickle cell disease have navigated a system that wasn’t designed with them in mind. They endure severe acute and chronic pain, limited treatment options, frequent hospitalizations, and one of the most difficult transitions in medicine: moving from pediatric to adult care. Too often, that transition causes patients to fall through the cracks, leading to worsening complications or a complete loss of connection to care.
Many of the people I work with have spent years having their pain questioned or minimized. They’ve waited for treatment while in severe pain crisis, encountered providers unfamiliar with sickle cell disease, and struggled to navigate insurance, find specialists, or simply get someone to return a phone call.
Over time, experiences like these don’t just create frustration; they erode trust altogether. When people lose trust in the health care system, they often stop using it until they have no other choice. By then, a manageable problem has become a medical emergency.
This is where community health workers come in.
I don’t prescribe medication or perform procedures, but I can sit with someone after a difficult appointment and help them process what happened. I can make sure they don’t lose their insurance because of paperwork. I can help them find transportation to clinic, coordinate appointments, connect them with medication assistance, or simply check in. Sometimes, the most important thing I do is remind someone that they deserve to be heard.
These moments may seem small, but they are essential in determining whether people stay connected to care or fall away from it.
I serve about 125 patients at the UC Davis Sickle Cell Disease Clinic, where I have learned that no two journeys are the same. Sickle cell disease affects every person differently, but one thing is consistent: people are more likely to stay engaged in their care when they know someone is walking alongside them.
When trust is rebuilt, situations begin to shift for the better. Patients keep appointments. They communicate openly with their care team. They seek treatment earlier instead of waiting for a medical emergency.
California has shown what is possible when we recognize that trust is part of health care infrastructure.
In 2019, the state established Networking California for Sickle Cell Care (NCSCC), the first statewide network of comprehensive, adult sickle cell clinics. What makes NCSCC different isn’t just that it increased access to specialty care, it also recognized that comprehensive care means investing in the relationships that help patients access that care in the first place.
By integrating community health workers into multidisciplinary care teams, NCSCC acknowledged something many of us already knew: excellent clinical care alone isn’t enough if patients have lost faith in the system delivering it.
The results speak for themselves. Today, NCSCC serves more than 1,100 adults across 12 clinics. Since its creation, preventable hospitalizations have declined by 20 percent, and total length of hospital stay has been cut in half. Those outcomes reflect more than good medicine; they reflect patients who stayed connected to care.
This year, California reaffirmed that commitment by renewing funding for NCSCC through the Budget Act of 2026. That investment means more people living with sickle cell disease will have access to coordinated, compassionate care, and to community health workers who can help them navigate a system that has too often let them down.
This lesson extends far beyond sickle cell disease. If we want healthier communities, we cannot measure health care infrastructure only by the number of hospitals we build or specialists we train. We must also invest in the people who help patients access and maintain that care, especially those who have every reason to distrust the system because of years of inequity, discrimination, or neglect.
Every day, I watch patients take small but meaningful steps toward a health care system that once made them feel invisible. This doesn’t happen because a new building opened or a new policy passed; it happens through small but meaningful acts of care: someone answering the phone, remembering their name, listening without judgment, and staying with them long enough to earn their trust.
If we want California’s investments in medicine to reach the people who need them most, we must continue investing in the people who make those connections possible.