Mid-April was a nerve-racking time to arrive on the National Institutes of Health campus outside Washington, D.C. — it was just two weeks after more than 1,000 NIH employees had been laid off in a chaotic downsizing of the federal workforce that disrupted many of the health agency’s core functions. Ellyn Kodroff had flown in from Chicago for the start of her daughter Jori’s experimental treatment for a rare digestive disorder. Swallowing food was so painful for Jori, 32, that she’d largely been on a liquid diet since she was 14. Now her health had taken a turn, and Ellyn wanted to be by her side as she received her first injection at the NIH Clinical Center.
The Kodroffs feared the treatment would be delayed. Luckily for them, it wasn’t. But while in Bethesda, Md., they received bad news of a different sort: The NIH had tossed out a grant application to support a network of researchers who study Jori’s inherited disease, including the one running her clinical trial, throwing a decade of rapid progress against the disease into jeopardy.
The reason? A paperwork error.
The funding renewal had been caught up in a Trump administration crackdown on NIH grants being used to support international collaborations, a sudden policy change that White House officials said was driven by concerns over national security, including claims that research by an NIH grant recipient in China had seeded the Covid pandemic.
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