The National Institutes of Health recently canceled the grant for a study focusing on sickle cell disease, citing DEI divisiveness as the reason.
According to NBC, the grant supported the work of Dr. Charity Oyedeji, a hematologist at Duke University School of Medicine. Amassing at $750,000, the research grant helped fund work on a project known as SickleFit. The project helped sickle cell patients deal with their illness and chronic pain through physical therapy.
The study offered in-person and virtual personalized exercise programs through Zoom for participants aged 40 years and older who live with sickle cell disease.
According to Dr. Oyedeji, the NIH informed her that she would no longer receive funding due to a “low return on investment.” The research center also said that Sicklefit involved DEI, thereby “supporting unlawful discrimination on the basis of race.”
Moving forward, Dr. Oyedeji stated that she plans to appeal the decision to cut her funding while also seeking alternative sources of funding to continue her work.
“People that couldn’t do something as simple as get out of a chair without assistance are able to do that now,” said Dr. Oyedeji, per NBC. “Even small disruptions in research can have really major negative impacts. Evidence clearly shows that this type of research prolongs life, improves function – these grants were originally awarded because of their merit.”
The lack of funding for sickle cell disease research comes as the illness continues to disproportionately affect Black Americans.
According to the Centers for Disease Control, the illness affects approximately 100,000 people nationwide. Of these people, over 90% are Black Americans. Approximately 1 million to 3 million Americans have the sickle cell trait, while 8% to 10% of Black Americans are diagnosed with a single gene for the illness.
Often underdiagnosed and undertreated, sickle cell disease is characterized by the formation of deformed red blood cells that develop into sickle shapes. Often, these malformed cells die early and become stuck in small blood vessels, leading to blood flow issues and other medical problems such as anemia, chronic pain, infections, strokes, as well as heart disease.
Once diagnosed with sickle cell disease, patients have a life expectancy that is over 20 years less than the national average.
Despite the serious health issues, sickle cell disease patients often report difficulties when obtaining care, dismissals when they report their symptoms and are often forced to deal with stigmas.
