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BJC opens first adult sickle cell treatment center to help people manage crises

Nikeyia Ingram receives an IV infusion from registered nurse Joseph McGann at Barnes-Jewish Hospital's sickle cell treatment center.
Andrea Y. Henderson
St. Louis Public Radio
Nikeyia Ingram receives an IV infusion from registered nurse Joseph McGann at Barnes-Jewish Hospital's sickle cell treatment center. She came into the center on Monday with level 7 pain and wanted treatments to bring her pain level to 4, which she can manage at home.

Barnes-Jewish Hospital opened its first adult sickle cell treatment center this month for those in need of pain medicine to help manage their crises.

The 1,700-square-foot space is located inside BJC’s Center for Advanced Medicine at 4921 Parkview Place. It is a referral-based outpatient care facility where patients can receive intravenous fluids from their treatment plan over a span of three to four hours. The center is open from 10 a.m. to 6 p.m. weekdays.

Patients having an unmanageable sickle cell crisis typically have to wait hours to receive treatment at the emergency room, and this center helps treat patients immediately without proving pain, said Dr. Sana Saif Ur Rehman, the center’s medical director and a hematologist.

“If they come to my ER, they have treatment plans, but if they go to a different ER, then they will start with a dose that is a drop in the bucket first, because that person does not feel comfortable giving a higher dose,” Saif Ur Rehman said. “This infusion center is the kind of response where you don't have to wait, you don't have to prove, and you don't have to get a suboptimal dose.”

BJC medical directors and other health officials spoke with patients, people in the community living with sickle cell disease and community health workers to better understand the needs of adults with the genetic blood disease. Many patients told officials they wanted quicker treatment and a safe space to receive higher doses of pain medication without the fear of being stereotyped as a drug seeker.

Sickle cell disease affects the red blood cells. It causes the cells to turn hard and sticky and are in the shape of a sickle. The disease disproportionately affects Black Americans. One out of every 365 African Americans will be born with the disease, according to the Centers for Disease Control and Prevention.

Nikeyia Ingram, 38, has been living with sickle cell type C, which is a mild form of sickle cell anemia, since birth. Ingram rarely had crises as a child. She had a few in high school and into her adult life, but since the death of her son in September, she has been having a crisis nearly every month.

“Stress and grief is a big trigger for me … because it's a lot on me, and the weather makes it no better,” Ingram said.

People living with sickle cell disease have experienced immense pain over their lifetimes. Many have endured numerous surgeries and have been diagnosed with other medical conditions because of the disease. Ingram is completely blind in her right eye, she had a cholecystectomy, she suffers with chronic lower back and leg pain, and she has been hospitalized numerous times.

She has been advocating for a treatment center that will make sickle cell patients feel comfortable with asking for more pain medicine. She herself has experienced medical staff in various emergency rooms across the region judging her and labeling her a drug seeker when coming in for pain medicine during a crisis.

“We want to be treated like we're human,” said Ingram, who also works for Sickle Cell Association–St. Louis. “I need to get the proper treatment, so I don't have to be hospitalized, so I can go back home. [People] don't need to come and be judged and to feel like they're not heard.”

On Monday, Ingram came to her hematologist appointment with level 7 pain (out of 10) and was immediately admitted to the treatment center to receive four milligrams of a Dilaudid infusion every three hours. She said she would be comfortable leaving once her pain level was lowered to 4, because she can manage that level of pain from home.

Ingram hopes more people in the area use the center, because she said it is more accommodating than emergency rooms.

Saif Ur Rehman said many people who suffer from the disease get admitted to the hospital from the emergency room because they have suffered too long without medication, and that heavily affects their personal lives.

“Patients can go back to taking care of their kids, they can go back to working, they can get their pain treated and not just suffer at home just because they just don't want to deal with the ER,” said Saif Ur Rehman.

Andrea covers race, identity & culture at St. Louis Public Radio.