When many people think of “Diversity, Equity and Inclusion” efforts, they think of a workplace training. However, targeting of those initiatives has resulted in harm far beyond that, affecting the health of many Americans, the writer says.
By Martin Henson
Beacon Media
Dr. Charity Oyedegi, a Duke University hematologist and researcher who focuses on sickle cell disease, had her five-year, $750,000 NIH grant to improve care for sickle cell disease canceled last year by Trump administration executive orders that targeted “Diversity, Equity and Inclusion” (DEI).
She is now using a patchwork of other funding sources to try to complete the same research. Her research was likely targeted because the 90% of the 100,000 or so people in the U.S. and 7,000 in North Carolina who have the disease are Black, according to the U.S. Centers for Disease Control and Prevention.
Other scientific researchers have not been so fortunate. A WRAL analysis last July found more than 2,500 grants were terminated last year, including approximately 80 from North Carolina universities. The U.S. Supreme Court ruled last August that the Trump administration was within its rights to cancel $783 million in healthcare-related grants it linked to “DEI.”
North Carolina’s ability to contribute to genetic research makes our state stand out. More than 800 life science companies are in North Carolina, and most of them are located in the Research Triangle.
Aside from research, North Carolina should step up to provide the services these patients need. North Carolina’s Senate Bill 283, a bill to fund support programs for individuals with sickle cell disease, was filed in 2025 but hasn’t been considered for a hearing or vote. Without the funding provided by that legislation, North Carolina would miss out on key services for these vulnerable folks, including six comprehensive sickle cell centers to meet patients’ medical, social, and behavioral health needs and other positions.
Dr. Oyedeji’s research for sickle cell treatments is vital. The tools she is developing, the Sickle Cell Disease Functional Assessment and the SickleFit exercise program, are the bridge between high cost therapies and the day to day lives of patients who are aging with this disease.
There is some good news. North Carolina Medicaid is still participating in the federal Cell and Gene Therapies Access model, which will “provide treatments within a framework that lowers prices for states and ties payments to outcomes.”
However, the reality that the Trump administration’s anti-DEI initiatives can mark the difference between life-saving medication and the “colorblind” rule of law is still present. The National Institute of Health and the National Science Foundation were forced to terminate grants linked to equity. The long term cost of inaction will be more costly than any short term budget cuts. Escalating emergency rooms room visits and lost labor from preventable illness will be signs that it is too late to change course.
People with this genetic disease are literally running out of time. The Trump administration has often ruled according to grievance; in this case canceling “woke” scientific research that can help Black people.
North Carolina has the chance to be more sensible. State providers should fill gaps wherever they can; universities and the private sector should step up wherever they can and get creative so those that can benefit from North Carolinians’ research are allowed to live.
Community members should also take the time to get educated on the rapidly shifting landscape of genetics and curative therapies, and then rally elected officials to ensure research funding continues for the vulnerable sickle cell community. Raise the work of pioneering clinicians like Dr. Oyedeji into public sphere.
We should challenge these executive orders and show our values as North Carolinians. Let’s not make life and death decisions based on labels. The quality of life of those living with sickle cell disease — and all marginalized communities in need of specialized care — depend on it.
Martin Henson lives in Raleigh. He is an advocate and executive director of BMEN Foundation, which convenes Black men to address issues in their lives and communities. See his work at MartinHSpeaks.com.
