Copyright STAT
BETHESDA, Md. — For months, Vanderbilt sociologist Tara McKay had waited for the notice that her grant had been renewed for another year, a signoff that had always been routine. Instead, while sick at home, she got a panicked phone call from her program officer at the National Institutes of Health that she had 24 hours to alter the language of her grant title — otherwise it would be at risk of not being funded. McKay is familiar with the notion that partisan politics can have a deep impact on science and health. The grant, after all, was tracking the ripple effects of the decision by Tennessee’s Republican governor to reject nearly $9 million in federal funding for HIV prevention. It was initially titled “A Multimethod Assessment of the Clinical, Economic & Social Impact of the Rejection of Federal HIV Prevention Funds in Tennessee.” Now she and her collaborator felt compelled to remove mention of the governor’s decision and describe their work as evaluating the “Impact of Evolving HIV Prevention and Care Strategies in Tennessee.” Advertisement While wording changes may seem trivial amid the Trump administration’s broad upheaval of federally funded research, such compromises can alter the course of projects and the questions scientists address. They can also be demoralizing. To McKay, that new title “de-partisans” the rejecting of funding — reframing the political decision to turn away HIV funds. But she felt it was better than losing the grant. “If that project ended, basically the state gets a free pass, right?” she said in an interview. McKay’s is one of more than 700 multiyear grants that changed their titles from 2024 to 2025, according to an analysis of NIH Reporter data by Jeremy Berg, who previously led one of the NIH’s institutes and has been a vocal critic of the administration’s moves at the agency. While some changes were clerical — fixing capitalization, punctuation, or spelling — the vast majority were to remove words and phrases that have become anathema to the administration. Nearly 100 grants have removed “equity” from their title, dozens removed references to “disparities,” and many others removed references to specific racial groups and gender minorities. There is no formal list of banned words or phrases at the NIH. Rather, after grant renewals are approved by agency scientists, they now have to go through a second review by political appointees, who have been flagging grants as needing changes before they can be funded. In some cases, staffers were instructed to remove specific words or phrases, while in other instances they were left to make educated guesses about why a grant was flagged. In conversations with nine current and former NIH officials, as well as five outside researchers, scientists described it as a painful process. Advertisement Principal investigators understand the importance of naming the communities they study and not obscuring language, but also have to consider the need to maintain funding to pay their staff. “There were tears in many meetings we had over the summer,” said Jessica Magidson, who directs a research center on substance use at the University of Maryland. A grant to study the effectiveness of community health workers in improving the mental health of people with HIV was kicked back to her for changes. She ultimately removed “South Africa” from the title before it was funded. “These are people’s livelihoods, so I think they’re fearing for their own positions. But it’s also [that] this is work that people care so much about, and identities that people share with the patients or participants that we’re working with,” she said in describing the dilemma she faced. “It’s the combination of your own funding uncertainty plus this kind of clash in morals and values that is just such a hard combination.” Many researchers argue that semantic changes are a small price to pay for survival. NIH staff scientists in the past several months raced to spend down their agency’s budget before the end of the fiscal year, fearing the White House Office of Management and Budget would claw back any unspent funds. There was no time to argue with political appointees, or have drawn out discussions with grantees about finessing phrases, program officers told STAT. “Whenever we were given guidance on how to go about making the changes to grants, it was always framed in terms of, how do we ‘help’ PIs to to get funding,” said Vani Pariyadath, who resigned from her position as a branch chief at the National Institute of Drug Abuse in June over frustration about how the administration was disrupting health equity research. But she fears it was a short-sighted strategy that “seeded so much harm.” To think that changes to health disparities work will stop at semantic changes “just puts a lot of faith in the administration that I don’t see warranted based on prior actions,” she added. Advertisement Asked about the changes made to the wording of grants, an NIH spokesperson told STAT, “The agency has provided its Institutes and Centers with clear priorities, ensuring that resources are directed where they matter most. NIH remains committed to research that is free from ideology and bias — science that is exploratory, rigorous, and focused on improving health outcomes.” For some health disparities researchers, what’s happening now is not that different from how they have long had to talk about their research in a way that would make it palatable to private funders and employers. “I think the work in health disparities can continue, and being strategic, and how one talks about certain things that they don’t want to read about is fine,” said Eliseo Pérez-Stable, who led the National Institute of Minority Health and Health Disparities until he was put on administrative leave in April. “We’ve kind of always had to do something along those lines, and so this is just for now what is needed.” He added that political appointees at the agency are “sensitive about using the word racism. But that’s, in a way, always been there. This administration is just more explicit about it,” he said. Health disparities scholars’ adoption of the term “equity” may have made them more vulnerable to political attacks, he said, and moving away from it “because of the current political environment is a smart, strategic survival approach.” One researcher, who changed their grant title, agreed the policing of language is not unprecedented. “There have been other times when explicitly, you couldn’t put certain phrases or words, and people still did the research. But then even more subtly, the way in which NIH sets priorities, even in the best of times, always has put constraints on the language people use when they write grants and the topics that they study,” the researcher said, referencing a period during George W. Bush’s administration when scientists who study AIDS were asked to avoid certain words and phrases. Advertisement They cautioned, however, that while researchers may intend to continue health equity work despite scrutiny of certain words, it may not unfold that way. “Despite our best intentions, researchers who have said ‘I’m gonna change these words, but I’m still going to do the work I want to do,’ inevitably, we’re going to struggle to actually do that,” said the researcher, who like others in this story requested anonymity due to fears of professional reprisal. “We’re going to be afraid to do it as explicitly and as directly as we might have otherwise.” ‘It creates a catch-22 problem’ The struggle is already evident. Some scientists, worried about their ability to be funded in the future, have changed what they ask on surveys, for example, leaving out questions about gender identity and racial groups. Many of the new titles, to avoid using phrases that would raise flags, have become broader and vague, which can put off potential collaborators — meaning researchers are being pulled in opposite directions by the administration and their colleagues. McKay, the Vanderbilt sociologist, has seen this issue play out. In a recent study section, when groups of external researchers evaluate NIH grant proposals, an application she collaborated on was criticized for not being inclusive of transgender people. But the grant risked not passing muster with political appointees if it were explicitly inclusive of trans people. “The reviewers aren’t aligned with the administration. It creates this catch-22 problem, where you can’t talk about it, so the work is vague. Then the reviewers are like, ‘The work is vague. We can’t fund it,’” she said. The annual renewal of NIH grants used to be straightforward, based on a checklist meant to ensure the research was progressing as expected. They were almost always approved, barring rare cases of academic fraud or major disruptions. Under the Trump administration, even grants that have already been approved for funding have been put through additional screening by political appointees, who in some cases are sending them back to be altered. Some staffers have received spreadsheets from the agency’s Office of Extramural Research with grants needing changes highlighted in yellow. “The highlighted grants in the attached sheet need a bit of attention before they can go out,” read one such email sent by Jon Lorsch, the recently appointed head of extramural research. Advertisement The spreadsheet, which was obtained by STAT, contained information about the grant, and in the last column, comments about what would need to be altered. On multiple occasions, staffers were encouraged to “renegotiate” an award to change the phrase “health equity” to “health disparities.” On other occasions, communications about such changes are opaque, leaving program officers who oversee a slate of grants feeling as if they are “basically playing a guessing game,” one of them said. Given the administration’s vocal opposition to work involving racial or gender inequity, program officers have attempted to make educated guesses as to what changes they can make to avoid further scrutiny. One staffer developed a tool — trained on previous grants that had been funded or sent back — to reverse engineer what terms or phrases may be getting picked up by political appointees. But the ambiguity has left program officers wondering whether they have censored more awards than necessary. “What is infuriating about it is the fact that we cannot access the ground truth. There is no ground truth,” another program officer said. “Was it necessary to censor this person’s work? I don’t know.” Even in more subtle ways, it feels to some program officers that health equity work is being demonized. They said that colleagues will refer to the process of rewording grants as “sanitizing,” “cleaning up,” or “fixing” — words implying the research is dirty, flawed, and not to be touched by the agency. “We’re already changing our research direction, just by the sheer labeling of things as controversial, wrongly,” said a program officer at the National Cancer Institute. Sarah Kobrin, a branch chief at NCI, said she has described the process as “whitewashing.” “The point is that it’s excruciating for these decisions to be made at the individual level,” said Kobrin, who emphasized she was speaking in her personal capacity. Much of her portfolio had come under question, and in recent weeks she’s begun to refuse to make such changes to her grants. “Some of us have decided that the process is not one that we want to participate in anymore. It’s wrong for us.” Advertisement Program officers feel that NIH Director Jay Bhattacharya, who has blamed them for creating ad hoc lists of banned words, and other agency leaders could do more to clarify their expectations by distributing guidance and conducting training on what grants are permissible. “If Dr. Bhattacharya were interested in truly leading NIH, and he meant what he said about this not going as he intended, in that there’s more censorship than is intended, then he absolutely has it within his power to correct that,” said one program official. That lack of transparency feels intentional, they added. “That is 100% on purpose by the administration. They are trying to make people afraid to use the word ‘equity.’ They’re trying to make people afraid to use the term ‘transgender.’ It’s highly effective.” Asked for a response, NIH said media responses are delayed during the government shutdown. The “guessing game” has been unmooring for many career scientists, who have formed groups on the encrypted messaging app Signal to share what is happening across the agency’s 27 institutes and to vent about frustrations. Some have also been attending a weekly rally hosted by a handful of NIH employees every Saturday since May. The “NIH Vigils,” as they refer to them, are part resistance protest and part therapy session. “It’s a joyful resistance, and it is by design somber, right? They’re vigils. They’re supposed to be like funerals for all the things that we’ve lost. But we’re also intentional about not making them feel like a chore to attend, because we want people to come and attend them,” said Jenna Norton, a program officer who focuses on health equity, and is a frequent attendee. On a Saturday morning in September, just over a dozen people gathered outside a Metro station near the NIH’s Bethesda campus. A pile of posters rested against a building, many in the shape of headstones, decrying recent changes by the administration. “RIP Vaccines,” one read. “In loving memory of gender affirming care,” said another. “RIP Science,” another read. Advertisement Participants were handed a program for that day, which included discussions of the impending government shutdown, the potential for more layoffs at NIH, a Centers for Disease Control and Prevention award for autism research, and news about the FDA’s plan to link child deaths to the Covid vaccine. But most prominent was a word cloud that Berg created of the banned words turned up by his analysis of changes to grant titles, with the words “equity,” “disparity,” “diverse,” and “minority” dwarfing others in the list. Norton held up the program as she spoke through a microphone. “When Jay Bhattacharya goes around and says there are no banned words, these are the banned words, right? These are the things that are being removed from science,” she said. “Those are the words that have been removed from NIH science.” ‘We don’t do DEI, we do science’ In the initial weeks of the second Trump presidency, Pérez-Stable, then the head of the Minority Health and Health Disparities institute, tried to make the case that his branch should not fall under the administration’s assault on “DEI.” The newly appointed NIH deputy chief of staff, James McElroy, had set out to meet with all of the agency’s 27 institute and center directors. While many of those leaders had not heard of McElroy, it was conveyed to them that he was to serve as a liaison between the agency and the White House. Former officials have described the meetings as curt and combative. When he met with Pérez-Stable, McElroy wasted no time. “After an introduction, the first thing he said to me was, ‘You know, your institute is in direct conflict with the president’s executive orders,” Pérez-Stable recounted in his first extensive interview about the state of health disparities work and his experience in the Trump administration. “But I said, ‘No, that’s incorrect. We don’t do DEI, we do science, we do health disparities research.’ But obviously that didn’t get me anywhere.” (McElroy, who is no longer listed as an HHS employee, could not be reached for comment.) Advertisement Just weeks later, Pérez-Stable was put on administrative leave. Since then, the institute he previously led has come under fire by the White House. In its budget request for the 2026 fiscal year, NIMHD was one of four institutes it requested be entirely defunded because it “is replete with DEI expenditures.” In justifying delays in NIH funding on CNN, Russell Vought, the head of the Office of Management and Budget, said “You literally have an institute that does nothing more than DEI research at NIH.” Over the summer, Peréz-Stable felt he had been making progress in convincing the administration to take him off administrative leave — at least for a short stint — so that he could help the agency transition to a new leader. But on Sept. 30, that plan unraveled and Peréz-Stable was terminated. “It’s sad. I felt humiliated by the whole thing,” he said. “Here I was for 10 years doing this, and then, ‘Oh, sorry, that’s it. You’re done.’ Everything about NIH had been so, so positive. To finish on that note has been really difficult. I haven’t yet gotten over that grief period, even though I’ve had six months to think about it.” Describing himself as a “very pragmatic person,” he said he had been heartened that Bhattacharya included “solution-oriented approaches in health disparities research” as one of his 12 priorities as director. While the NIH’s extramural grant portfolio has been subject to massive disruptions, Pérez-Stable said the agency’s in-house research arm, including his own lab, had largely been allowed to continue its work. Following the massive layoffs imposed by Elon Musk’s DOGE service, Pérez-Stable said his institute was able to hire back some of those who were let go. (Still, he estimates, NIMHD now has about 60 full-time staffers, down from about 120 at the beginning of the year.) The NIH as a whole was also able to allocate its entire budget by the end of the fiscal year on Sept. 30, which was a surprise given the number of disruptions to NIH grants earlier in the year. And when the Supreme Court overturned a federal district judge’s decision ordering the reinstatement of terminated awards, the agency chose not to terminate them again. To Pérez-Stable, it was a sign that NIH may have been regaining its autonomy. Advertisement “NIH decided not to do that, and that must have come directly from Bhattacharya,” he said. In August, Pérez-Stable also met with Matthew Memoli, and it seemed like he would be allowed to stay on as a senior investigator at the agency’s intramural arm so that he could help publish his lab’s remaining research and shepherd his trainees into other roles. “Memoli said to me that he and Bhattacharya didn’t support putting us on leave,” Pérez-Stable said. “He said, ‘We didn’t do this to you. We would have worked with you.’ Part of me wants to believe them, but, you know, at this point, I’m not sure what I believe.” Neither is the rest of the scientific community.
