The Cultural and Clinical Challenges of Sickle Cell with Ifeyinwa “Ify” Osunkwo, MD

Though sickle cell disease had been present in Africa for over 5000 years, it was first “discovered” in 1910 when a dental student named Walter Clement Noel became the first patient to be formally diagnosed. From there, more would be uncovered about the disease in the decades following his diagnosis, such as how it disproportionately affects patients of African descent.

According to the Centers for Disease Control and Prevention, about 1 in every 13 Black infants in the US are born with the trait for sickle cell disease. Additionally, diagnosis and screening for sickle cell are still lacking in lesser-resourced regions of Africa and the US alike.

Ifeyinwa “Ify” Osunkwo, MD, director of Sickle Cell Disease Enterprise at the Levine Cancer Institute and Professor of Medicine and Pediatrics at Atrium Health, grew up in Nigeria and initially worked as a pediatrician hematologist before moving to the New York and New Jersey area.

Following this transition, her work would evolve to include older patients with sickle cell disease. Despite high mortality rates for patients with sickle cell disease under the age of 5 years in many parts of the world, advancements in vaccine programs, recent drug approvals, breakthroughs in chronic therapy, newborn screening, and more had contributed to improvements in mortality rates in parts of the US.

“I realized when my children grew up and finished high school with sickle cell disease, they were stuck in this no man's land without providers to take care of them,” Osunkwo said. “And I began to see more of my teenagers up until their mid-twenties, and my most recent job in Charlotte, North Carolina, they actually hired me to help them build an adult sickle cell program because there was nobody around who felt comfortable, who felt competent, or had the expertise to manage sickle cell disease in an aging population.”

Despite this, health inequities have halted progress in sickle cell care. Osunkwo noted that sickle cell disease “falls in the middle of every single inequity and disparity” from ethnic and racial disparities to a lack of knowledge and resources.

Osunkwo recommended that physicians who are unfamiliar with the disease refer to hematologists and other sickle cell disease specialists to provide patients with the best possible care early on.

“We want (sickle cell patients) to live long and healthy lives, and we can help them do that with the right kind of care team supporting them,” Osunkwo said. “I joke about the fact that I want my patients to live to be 99 years old, lose all their teeth and use a walker. It's going to take a lot of work from all of us working together to be able to get there.”