Dedicated Sickle Cell Disease Treatment Center at Barnes-Jewish Hospital offers new hope to patients

Nikeyia Ingram, 38, who was diagnosed with sickle cell disease (SCD) at just 6 months old, experiences pain nearly every day due to the red blood cell disorder. Most days, she’s able to treat the pain and manage her disease by controlling her stress, staying hydrated and keeping in touch with her medical team. Lately, Ingram has been finding that grief has been affecting her ability to manage her disease. Last year, she lost her 15-year-old, Demetrius Ingram, her only son, in a car accident. The heartache exacerbates her pain.

“When you struggle emotionally, it affects you physically,” says Ingram, who also works for Sickle Cell Association in St. Louis. “I’m doing my best to stay afloat, but I struggle to find balance. I try to stay on top of it. I stay in touch with my eye doctor, hematologist, primary care doctor and therapist.”

However, SCD symptoms can be unpredictable. On a day when she’s experiencing acute pain, Ingram might have to go to the hospital for treatment, which involves contacting her hematologist to ensure there’s space in the emergency department (ED) to receive care. One study, published in the journal Pediatric Blood & Cancer, found that patients with SCD visit the ED an average of three times per year from the time they’re teenagers through middle age. For people with SCD, this can mean long wait times in the ED, missed time off from work and time away from their families.

The Sickle Cell Treatment Center, which recently opened at Barnes-Jewish Hospital, offers patients like Ingram hope when it comes to comprehensive care for managing SCD. The 1,700-square-foot space, part of BJC HealthCare’s Center for Advanced Medicine, will support people with SCD as a referral-based outpatient facility where patients can receive intravenous fluids to manage symptoms.

SCD is a genetic disorder in which abnormal hemoglobin, a protein that carries oxygen, changes the shape of red blood cells. The cells morph into a sickle shape, which can prevent the patient’s blood from flowing properly, leading to serious health challenges such as stroke or frequent infections. Other symptoms of SCD include pain, anemia, jaundice, swelling in the hands and feet, vision problems and chest pain.

The exact number of people with SCD is unknown, but the Centers for Disease Control and Prevention estimates that roughly 100,000 people in the U.S. live with the condition. Black people are disproportionally affected by this disease. The CDC estimates that SCD occurs in 1 of 365 Black people in the U.S. and that 1 in 13 Black babies are born with sickle cell trait (SCT), meaning they carry a single copy of the gene that causes SCD. Finding specialized treatment is important for people living with SCD. The only FDA-approved therapy for people with SCD that may cure the disease is a stem cell or bone marrow transplant.

Winston Wright is the program manager of Diversity, Equity and Inclusion at BJC HealthCare. He says that giving community members access and space is critical. “With BJC being one of the premier health care organizations for such a large population in the area, we are one of the only options for folks with sickle cell disease. Given that historically this disease primarily impacts Black people, we [find there’s room for improvement] on the access piece.” Wright highlights BJC’s commitment to world-class care and the importance of offering that care to all demographics.

“We know that there are diseases that specifically impact Black people, folks of lower income status or those in different ZIP codes — whether in urban or rural environments,” he says. Wright explains that the opening of this treatment center impresses upon the community the importance of expanding clinical services for the people who need them. “The treatment center offers a dedicated space that focuses on the patient, their care and their specific needs. Access is a journey we are moving towards,” says Wright, “for sickle cell and other diseases as well.”

Ingram says the difficulty people face with finding treatment for SCD adds to the challenges of the disease, so the opening of Barnes-Jewish Hospital’s Sickle Cell Treatment Center means a lot to her. “I was so happy to have something that’s just for SCD patients,” she says. “We’ve come a long way.”

Visit barnesjewish.org/sicklecell to learn more about sickle cell disease treatment at Barnes-Jewish Hospital.