Sickle Cell Program at Loma Linda Recognized for Excellence by NASCC

Part of group of NASCC-affiliated centers treating SCD patients in US

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by Mary Chapman |

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The sickle cell disease (SCD) treatment program at Loma Linda University Children’s Hospital in California has been recognized as a center of excellence, joining dozens of other centers in the U.S. affiliated with the National Alliance for Sickle Cell Centers (NASCC).

The NASCC identifies “member” centers based on the quality of their comprehensive care, setting standards and identifying opportunities and resources to further bolster such care. It also advocates for access to full-spectrum disease care to improve patients’ life quality and health outcomes, and to advance sickle cell research.

Established in 2017, the Loma Linda pediatric treatment program currently treats about 300 people with the blood disorder annually. To help patients and families effectively manage the complex disease, its professional staff includes hematologists, nurse practitioners, registered nurses, and behavioral health specialists.

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Linda Loma services range from newborn screening to full-spectrum care

“I am honored to be part of helping create a paradigm shift in providing the attention and respect that this group of society and patients deserve,” Akshat Jain, MD, director of the Linda Loma center, said in a university press release. “We are able to keep our patients out of hospitals and in schools — and they can have a shot at a normal life. It’s extremely satisfying.”

In addition to personalized and coordinated care, the program provides clinical trial participation opportunities, and resources and support to help patients handle disease complications. These can include acute chest syndrome, anemia, stroke, and painful vaso-occlusive crises or VOCs.

Its services include newborn SCD screening, a sickle cell trait support program, bone marrow transplants, social and behavioral support, and pediatric-to-adult transition care. The center reported having used stem cell therapy to cure about a dozen patients with the disorder, which largely affects African Americans. About 1,000 babies are born with sickle cell in the U.S. each year.

In addition to bringing attention to the Loma Linda program, NASCC affiliation has allowed Jain and his team to participate in large investigations, including one focused on the natural history of SCD, specifically the sickle cell trait, and another seeking to address organ damage in people with the condition.

SCD, characterized by a faulty and sticky version of hemoglobin, the protein that carries oxygen throughout the body, obstructs blood flow and oxygen supply to tissues. This can result in bone death that causes severe pain.

“Imagine a two-year-old going through that pain every single day until they die,” Jain said. “It’s horrible.”

Beyond his work at the center, Jain has engaged with community groups, hospitals, schools, physician groups, and urgent care clinics about changing the way sickle cell patients are cared for and perceived. He noted that patients trying to control pain due to SCD with opioids are often stigmatized.

“It took me five years to change the mentality and thought processes of providers in our community,” Jain said.

California’s state senate recognized the hospital in 2022 for establishing the treatment center, which serves patients from southeastern California, southern Nevada, and much of Arizona.

A listing of NASCC-affiliated centers across the U.S. is available.