A doctor says she’s scrambling to figure out how she’ll continue her work helping sickle cell disease patients after the National Institutes of Health (NIH) cancelled her $750,000 research grant, citing DEI and divisiveness as a factor.
Sickle cell disease affects about 100,000 people in the U.S., and 90% of patients are Black, according to NIH.
It’s a blood disorder that causes excruciating pain. Patients’ red blood cells are shaped like sickles and can’t flow properly. That causes lifelong issues such as strokes, lung problems and infections.
“So basically, someone who’s 50 years old, was functioning like someone who’s 80 years old. So that was what we found in our original pilot, so I really felt like we have to do something,” Dr. Charity Oyedeji, a hematologist with Duke University School of Medicine, told us.
For the past eight years, Oyedeji has been working on a project called SickleFit, which helps patients do physical therapy to deal with the chronic pain and health issues.
“People that couldn’t do something as simple as get out of a chair without assistance are able to do that now,” Oyedeji said.
But two weeks ago, the NIH told her it’s taking away her funding, citing a “low return on investment.” It also said studies involving DEI “support unlawful discrimination on the basis of race … which harms the health of Americans.”
“I was very sick to my stomach when I first saw it,” Oyedeji said. “… I just could not believe it.”
News4 reached out to NIH for comment. We have not yet heard back.
Lynndrick Holmes, of Austin, Texas, said the sickle cell research at NIH saved his life. He took part in a gene therapy study that changed his blood cells back to normal.
“My ability to actually do what everyone’s been saying Americans should do – pull themselves up by their own bootstraps – I wouldn’t have been able to do that without the research that was done,” Holmes said.
Holmes is still taking part in a 15-year study on the long-term effects of the treatment, to make sure it’s safe for others in the future. Although his study is still being funded, Holmes says he was saddened to hear about the funding for SickleFit being slashed.
“It feels like they’re using DEI as a euphemism for another word, another derogatory word towards people that they don’t like,” he said.
As for Dr. Oyedeji, she’s planning to appeal the NIH decision to cut her funds.
“Even small disruptions in research can have really major negative impacts,” Oyedeji said.
She also plans to search for other sources of funding, and says she’s hopeful her work can continue.
“Evidence clearly shows that this type of research prolongs life, improves function – these grants were originally awarded because of their merit,” she said.
from Local – NBC4 Washington https://ift.tt/KSqG3nT
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