NIH Pulls Funds, Putting Program’s Future in Question

For all of her professional life, Charity Oyedeji, MD, an assistant professor at a leading academic medical center, has dedicated herself to studying sickle cell disease (SCD) and helping individuals who suffer from it. In people with SCD, the red blood cells become rigid and shaped like a sickle, impeding their ability to flow through the body – a condition which brings with it significant pain and a host of life-threatening complications.

Dr. Oyedeji wants to improve the physical agility and quality of life of people with SCD through personalized strategies to manage frailty. This past June, however, the National Institutes of Health (NIH) notified her that a grant supporting her Sickle Cell Disease Functional Assessment Validation and Refinement Study and the SickleFit Exercise Program was being terminated, claiming a “low return on investment” and alleging the study supported racial discrimination. (More than 90% of patients with SCD in the U.S. are non-Hispanic Black or African American.)

“I was in year two of a five-year grant,” Dr. Oyedeji said. “The funding was terminated, and we’re not even halfway through.” An earlier pilot study had helped to shed light on the importance of Dr. Oyedeji’s work.

“We found that people in their 50s actually were functioning more like people in their 70s and 80s,” Dr. Oyedeji said. “We know that physical activity is associated with longevity. People with SCD have a shorter lifespan by about 20 years, compared to Blacks in the general population. We really need a program focused on developing a lifestyle of exercise and building confidence — tailoring the exercise to each person’s impairment.”

The study and program were intended to accomplish two things: create sound assessment tools and develop interventions to reduce impairments and improve physical functionality.

The future of her research was up in the air as Dr. Oyedeji searched for alternative sources of funding. Dr. Oyedeji subsequently received a Treating Fairly Award from ASH, which she said has helped her work to move forward.

Dr. Oyedeji said she worries that NIH cuts could have a chilling effect on researchers, perhaps prompting some to leave the field.

“A lot of researchers are scared, especially those from underrepresented backgrounds,” Dr. Oyedeji said. “Black and brown people are being targeted and they’re the most at risk of dropping out.”