Russell Vought testifies at his Senate confirmation hearing.Laura Brett/Zuma
The National Institutes of Health, the federal government’s leading medical research agency, came under attack by Project 2025 well before its architect, Russell Vought, was confirmed to Donald Trump’s second-term cabinet as head of the Office of Management and Budget. Vought’s pet project—the playbook for the Trump presidency—asserts that “funding for scientific research should not be controlled by a small group of highly paid and unaccountable insiders” and encourages “more modest federal funding through” NIH.
Last Friday, NIH announced that it would cap grants for “indirect” research costs—such as building-related and equipment expenses—at 15 percent, from a current average of around 30 percent. It’s far from the only health-related harm the Trump administration has brought about in less than a month: Robert F. Kennedy Jr., poised to take over the Department of Health and Human Services, is, of course, infamous for spreading vaccine disinformation, and cuts to the US Agency for International Development led to abrupt, damaging pauses in both HIV/AIDS research and medication distribution.
But some of those so-called insiders—that is, the NIH—funded research that helped scientists better understand cystic fibrosis, which led to Vertex Pharmaceuticals developing a cutting-edge treatment that Vought’s daughter Porter benefited from. In a 2021 Instagram post, Vought’s then-wife shared that the couple’s daughter had started Trikafta, a drug that has shown great promise in managing pulmonary issues associated with cystic fibrosis, which affects some 40,000 Americans.
Cystic fibrosis can lead to respiratory issues, including worsening lung function, even with the best non-experimental care. Trikafta is currently the focus of a study—backed by a $2.9 million grant from NIH—which seeks to understand what makes the drug so effective in some patients. NIH also funds other cystic fibrosis-related research, laying out $84 million annually to support research related to the disease. “We’re extremely grateful to live in a nation that leads the way on medical innovation,” Mary Vought wrote in her 2021 post.
“We sympathize greatly with those that can’t afford or struggle to pay for basic medical needs,” Vought and his wife wrote for an anti-abortion website after their daughter was born. “Our hearts break for sick children and their families in a new way.”
But Vought appears to be shutting that door firmly behind him, helping to mount a dizzying range of attacks on lifesaving medical research at (and beyond) NIH. Funding cuts to NIH across 28 states—such cuts are temporarily blocked in 22 others that sued over the move—means that research into rare diseases, already inadequate, may slow down. 95 percent of rare diseases, unlike cystic fibrosis, have no treatment, according to the National Organization for Rare Disorders, and most organizations lack the budget to fund drug research in partnership with pharmaceutical companies.
Neena Nizar, executive director and founder of Jansen’s Foundation, which pushes for treatment of Jansen’s metaphyseal chondrodysplasia, sees the Trump administration’s new cap on indirect costs “as a double-edged sword.” More money should go directly into research, Nizar said; but “indirect costs,” she continued, “are essential for keeping research labs running.”
For families of children with ultra-rare conditions, such as Jansen’s disease—which fewer than 30 people live with worldwide—NIH-led research could be the only path to care. One such project is the NIH-funded Rare Diseases Clinical Research Network, which has studied over 200 rare diseases since it was founded in 2003. Its exact impact is difficult to measure, but the network has clinical research sites in states where the Trump administration’s overhead budget cuts have not been blocked.
“As a community, we need to push for a system that sustains research, protects under-resourced institutions,” Nizar said, “and ensures that groundbreaking work—especially in rare diseases—continues without disruption.”
