Sickle cell researcher fights back, calling NIH grant termination "racist" and "discriminatory"

What was supposed to be a five-year, $750,000 NIH grant to fund Dr. Charity Oyedeji's sickle cell research at Duke University – was terminated.

“I thought it was possible,” Oyedeji said when asked if she anticipated her research being impacted. “I thought as a Black investigator, studying a population that is predominately Black, I am at risk.”

Oyedeji told WRAL she received the letter on June 16, but the bigger shock came when she took a closer look at the specific verbiage used in the termination letter itself regarding her K-Award.

“The words that were used were very non-scientific, very racist,” Oyedeji said. “Really negative language.”

In a copy of the termination letter provided to WRAL, DEI was cited as a reason for the research program’s termination.

In part, the notice read, “Research programs based primarily on artificial and non-scientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low return on investment, and ultimately do not enhance health, lengthen life, or reduce illness.”

“I’ve never in my life – even in a grant rejection letter – never used words like that, that were unscientific and just discriminatory,” Oyedeji told WRAL.

The letter further stated, “DEI studies are often used to support unlawful discrimination on the basis of race and other protected characteristics ICO’s, which harms the health of Americans. Therefore, it is the policy of the NIH not to prioritize such research programs.”

WRAL reached out to the White House, asking what metrics were used to make the determination to cut this specific grant, which aspects of the sickle cell research did not align with NIH priorities when determining research program funding, and if the administration would consider reinstating the grant.

Health and Human Services Communications Director Andrew Nixon responded to WRAL’s request in an email, stating, “The study itself has value, however unfortunately it was funded under an ideologically driven DEI program under the Biden Administration. In the future these types of programs that NIH has committed to fund to help people with sickle cell and other important diseases will be reviewed based on their scientific merit rather than on DEI criteria.”

A federal judge ruled some previous NIH grant cuts by the Trump administration were illegal, the same day Oyedeji received her termination letter.

In his ruling, U.S. District Judge William Young in Massachusetts called the actions “government racial discrimination.” Young was appointed by Republican President Ronald Regan, and has served on the bench for more than 40 years.

The NIH Grant Terminations in 2025 table has tracked terminated grants from institutions nationwide upon directive from The White House. WRAL analyzed the data and found more than 2,500 grants have been terminated since February 2025, including approximately 80 from North Carolina universities.

Duke Health officials released a statement following the grants termination citing they were not able to speak on the decisions made by the HHS.

“Dr. Oyedeji was hired at Duke because of her superb abilities as a physician and scientist. Her position exists independently of a granted award. We are not in a position to speak to HHS’s decision-making processes.”

Sickle cell disease (SCD) affects about 100,000 people in the United States, with more than 90% of patients being non-Hispanic Black or African American, according to the U.S. Centers for Disease Control and Prevention. 

The statistics are ones Oyedeji shared she was all too familiar with, long before earning her medical degree.

“I came to do hematology fellowship for the purpose of studying sickle cell disease because I have family affected by sickle cell disease,” Oyedeji said. “I have several family members that have died of sickle cell disease.”

The physician said her passion to research better options to improve quality of life for sickle cell patients has been fueled by her own family member’s experiences.

“As I entered into the clinical space and started seeing how people with sickle cell were being cared for, especially the adults, I was blown away and was like ‘We have to do better,” Oyedeji said. “I really wanted to focus my attention on improving clinical care, and to improve research for people with sickle cell.”

Oyedeji sees patients at both the Duke Adult Comprehensive Sickle Cell Center and Duke University Hospital.

The hematologist’s grant focuses on older adults with sickle cell, which she defined as patients 40 and older, due to the shortened life expectancy of patients with the disease.

The CDC states the average life expectancy of those with SCD is more than 20 years shorter than those without the disease.

“It’s not just about finding a cure, but it’s about finding other research and treatment options that can improve quality of life in day-to-day functions,” Oyedeji said. “We have curative options – they’re just $3 million. It’s not about really finding a cure, it’s about finding accessible solutions.”

The doctor took her story to social media on June 25 where it was quickly shared by others in the medical community online. In less than a week, her video had received more than a million views across TikTok and Instagram.

“A lot of people of people said they hadn’t heard about funding cuts until I came forward with the story,” she said.

Oyedeji said she chose social media because she wanted to break the “barrier” that she described between scientists and the general public.

“There’s a disconnect between the scientific community and the general public," she said. "We’re not the best at communicating what’s going on. We use kind of lofty language and we’re not really social media people. I think that barrier needs to be broken where we communicate what’s going on a lot more."

When WRAL asked if Oyedeji was scared to speak out publicly, she shared, “I was a little worried, but I felt transparency is really important when something unlawful is going on or something discriminatory is going on.”

The doctor said she thought people may attack her on social media, and described being pleasantly surprised with the amount of supportive engagement her post has received.

“I think it’s great because at the end of the day, they’re taxpayers. A lot of the comments were like, ‘These are things I would want my taxpayer money to go toward,” she said. “These are the people that are paying the tax money so the NIH can give grants for us to do this work, so they need to know.”

The doctor encouraged other researchers to come forward with their own stories, stating, “Keep fighting. Don’t stop, because that’s what they want us to do.”

“People that are doing projects in diversity, equity and inclusion, projects that are focused on health care disparities – keep going," she said. "Try to find alternative funding sources, but we need this. The public needs this. These are areas that are not getting enough attention.”

Oyedeji told WRAL her next step is to appeal her grant’s termination and to look for alternate sources of funding beyond federal.

"A sickle cell project won’t just benefit a person with sickle cell," Oyedeji said. "It’s going to benefit people that have other accelerated aging conditions, other blood disorders, other disorders of older adults; So, it’s not just about one population.”

For those responsible for terminating her grant and other similar projects in recent months, Oyedeji stated, “give them their money back.”

“These are merit-based grants that go through a peer reviewed process. These are not handouts. These are things that people have worked years to get,” Oyedeji said.