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Overcoming Barriers to Sickle Cell Treatment

Overcoming Barriers to Sickle Cell Treatment

Darbari is dedicated to righting health care disparities.

Hematologist Deepika Darbari knows well the health disparities suffered by individuals with sickle cell disease (SCD) — and has dedicated her career to fighting them.

A professor of pediatrics at George Washington University School of Medicine and Health Sciences and a hematologist at Children’s National Hospital, in Washington, D.C., Darbari believes that increased diversity among practitioners will improve treatment for children and adults with SCD. “Patients feel more comfortable and can more easily connect with physicians who look similar to them,” Darbari says. “Yet hematology, as a field, and medicine in general, lack diversity.”

This, in turn, can lead to “less innovative thinking — innovation that comes from diverse teams,” says Darbari. In December 2021, the American Society of Hematology (ASH) acknowledged her contributions with an honorific award for Leadership in Promoting Diversity.

Darbari, who mentors minority medical students and trainees whose research focuses on improving care for SCD, believes it’s crucial for trainees to see such patients early in their career. After all, it was her own experience treating children with SCD, as a pediatrician at Howard University Hospital, that prompted her to pursue a fellowship in pediatric hematology oncology from the joint program of Johns Hopkins University School of Medicine and the National Institutes of Health (2008–2011).

“A large proportion of patients with SCD come from minority backgrounds and face multiple barriers — the biggest being access to quality care, due to the shortage of providers who understand the full picture of SCD,” Darbari says. Many patients end up in the emergency department, where services are limited and doctors can mistake patients in pain as people with substance use disorder seeking opioids.

“To avoid the stigma, patients sometimes go out of their way to present themselves as responsible citizens, even in the face of debilitating pain,” says Darbari, noting that some may experience severe pain every single day of their lives.

She adds that research for SCD has historically been underfunded. “This ultimately affects the treatment we can provide and explains why we don’t have great options for managing SCD and pain in SCD.”

Darbari’s own research looks at pain. “Treatment once revolved around pain crises, but now we’re looking at pain as one symptom — and exploring ways to prevent pain from happening in the first place by controlling the disease process,” she says.

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