Scientist Naomi Lee knew that President Trump’s executive order ending federal programs promoting diversity, equity, and inclusion wasn’t good news for the training initiative she founded and co-directs. But she didn’t expect the impact to be so abrupt — and so complete.

Just two days after the order was issued on Jan. 20, Lee, an associate professor of chemistry and biochemistry at Northern Arizona University, got an email from the National Institutes of Health stating the agency was terminating the contract that had supported Cultural and Academic Research Experience, or CARE, which helps Native American and other students underrepresented in fields that include science and medicine. While NIH has contributed roughly $1 million to the program over the years, funds the agency had already sent as part of a two-year contract originally set to end in 2026 could no longer be used. Another $125,000 that was slated to arrive in June has also been nixed.

The rapidity with which the new administration is putting in place its policies to end DEI programs is sowing fear and anger among health equity researchers and those who study the impact of racism and run STEM pipeline programs like Lee’s. It is also worrying and confusing scientists who run medical studies, including many projects not labeled as diversity-related but which incorporate the idea that studying diverse populations leads to better research, safer drugs, and healthier populations overall. 

Lee said she is livid about how the cuts will challenge her program, which has given research experience and support to more than 100 high school students, many of whom have gone on to pursue degrees in science, technology, engineering, and math. Exasperated at how quickly the changes came after Trump’s inauguration, she told STAT on Friday, “I mean, it’s only been how many days now, five?” 

The full impact of the administration’s actions are unclear, in part because of a government freeze on most public communication through Feb. 1. A former NIH deputy director, Jodi Black, was quoted in a report released Monday by the investment bank Jeffries saying she thought the long-term impact of the current NIH freeze could be minimal if it ended soon, that universities could use their endowments to fund frozen grants and be reimbursed later, and could seek money from other sources such as foundations and pharmaceutical companies to fund research. But she noted that certain fields, including DEI efforts, “won’t receive funding going forward.” 

The uncertainty left researchers around the country from a wide variety of fields searching NIH web pages for information on their programs, with many finding the sites no longer exist. An NIH page listing instructions to apply for diversity supplements, at first showed the expiration date for such grants was moved from May 8, 2026 to Jan. 24, 2025, suggesting the program is no longer taking applications. That page then went dead.

This program provides money to support scientists from a wide range of groups who have faced barriers to entering science. “Now gone,” said Margot Kushel, a physician and researcher who directs the Benioff Homelessness and Housing Initiative at UCSF. 

“My big concern in the area of health equity is we are going to go backward, and our health is going to decline,” said Derek Griffith, a health equity researcher and professor at the University of Pennsylvania School of Nursing who co-authored a policy brief on Trump’s 2020 executive orders published just days before he took office again. “NIH has multiple centers they fund on health equity. Are they under threat? How deep does the rabbit hole go?”

Griffith and others are frustrated that the term DEIA is not defined in the executive order, leaving researchers wondering what is included. Is work aiding other groups included under the broad umbrella term of health equity — such as rural white Americans, veterans, and people who are disabled — also off the table? No one knows. 

“Even using terms like equity that we saw as benign, they’ve associated that with critical race theory. It makes no sense.” Griffith said. 

Titled “Ending radical and wasteful government DEI programs and preferencing,” the executive order instructs the federal government to cease any policies, programs, and activities that “include” diversity, equity, inclusion, and accessibility, or DEIA. That also includes the cessation of “equity-related” grants or contracts. It calls any work related to DEIA “shameful discrimination.”

“The executive order is written in a broad and vague way purposefully,” said Giridhar Mallya, a senior policy officer at the Robert Wood Johnson Foundation, which has made health equity a focus of its funding. “Anything with the broad goal of reducing disparities or promoting equal opportunity could be at risk.” 

Health equity research, long a stepchild within biomedicine, has been gaining prestige, legitimacy, interest of journal editors, and funding since 2020 — so much so that the field was being colonized by more established researchers. Even with more attention, experts say health disparities that have plagued the nation for decades continue to feel intractable.

“This work is hard enough to do as it is,” said Mallya. “It makes this work harder — legally, personally, strategically, and otherwise — and that’s part of the strategy so people give up on it.” 

Some said the order provides chilling evidence that the surge of interest in and funding for work on health equity and improving Black lives sparked in 2020 is proving short-lived. “The question we were grappling with after George Floyd’s murder was, ‘Is this a moment, or is this a movement?’” said Rachel Hardeman, the founding director of the Center for Antiracism Research for Health Equity at the University of Minnesota. “Last week was a reminder that George Floyd was a moment, but I do think we can still have a movement.” 

Any break in funding would affect not just researchers but many university employees paid by indirect funding from grants. “If you pause all the research, all our funding could be impacted,” said Lauren Jones, who directs diversity, equity, and inclusion efforts at the University of Minnesota School of Public Health. “We’re all uncertain about what is next. What does the next fiscal year bring?” 

Jones said she was worried about what defunding would mean not just for researchers but for the marginalized populations they study. “It’s not just a paycheck. I’m doing this work because I want our communities to thrive,” she said. “I want some justice and hope and I feel like that’s being strangled out of us.” 

She was also concerned the politicization of the field and threats on funding would push students away from studying the topic. “Either people won’t apply, or they’ll choose to study other things and we won’t have practitioners,” she said. 

Some are hoping nonprofit organizations could help fund research if it is no longer federally supported. “We will continue to defend and advance fundamental American values of diversity, equity, and inclusion with the urgency this moment requires,” Richard Besser, president and CEO of the Robert Wood Johnson Foundation, said in a statement condemning the new executive order. 

But even deep-pocketed foundations like his can’t replace billions of dollars in federal funding. “RWJF can’t be the answer for everyone and everything,” said Hardeman. 

James said fear was already affecting younger scientists. “I was in a meeting yesterday with junior folks who were hesitant to move forward with a great publication and it made me so sad,” she said Friday. “We’ve worked so hard to build up health equity research and I hate that folks are limiting themselves out of fear.”

After the Food and Drug Administration removed material on clinical trial diversity from its website last week, many researchers are worried about what the executive order will mean for efforts to recruit people from underrepresented groups into clinical trials. There’s been a growing consensus that diversity leads to better science, particularly in areas like precision medicine and genomics. When scientists are able to study people from different backgrounds, it becomes easier for researchers to discover key insights and treat specific illnesses for everyone, said Robert Winn, the director of the Massey Cancer Center at Virginia Commonwealth University.

“Part of precision medicine is absolutely rooted in having people represented. Women and men. Asians and Latinos and African Americans and whites and rural and urban and different locations,” Winn said. “The way we use science in a very precise way to target a specific patient literally can’t be separated from the need to actually have everyone represented in clinical trials.”

There are plenty of real-world examples of this. One of the most effective targeted therapies for lung cancer hits a common mutation called EGFR. About 50% of lung cancer patients in Asia carry EGFR mutations, so many of the clinical trials testing EGFR-targeted therapies recruited more heavily from communities with Asian ancestry or countries in Asia, including the trials that tested the current standard of care — AstraZeneca’s Tagrisso.

About 15% of lung cancer patients in the U.S. and the E.U. carry EGFR mutations, and Tagrisso and other EGFR-targeting therapies are also highly effective for white patients. That’s because what matters is having the mutation in the first place, not the patient’s ancestry. But working with specific communities that are more likely to have the mutation means it can be easier and faster to enroll participants who are eligible.

Triple-negative breast cancer is another disease that affects people from all different racial and ethnic backgrounds, but African American women suffer most. When researchers were able to compile data investigating 40,000 people of African descent, scientists discovered key new associations between certain genes and the risk of developing triple-negative breast cancer. That’s knowledge that could lead to better understanding how to treat and prevent this deadly disease for people of any race who are at risk.

“Those are data we need to get from people from different places and spaces and who are from different ancestries to put the puzzle together in the best possible way. I wish one size fits all in science, that would be convenient,” said Winn. “But it just doesn’t.”

The lack of information from the federal government isn’t the only source of confusion for researchers. Their own universities have also been mostly silent. Many university officials were not providing guidance to researchers and refused to comment to STAT about their plans. Some also directed health equity researchers not to talk to the press and cancel interviews they’d scheduled — a “freeze on talking about the freeze,” as one researcher put it. 

“I hope some of the silence is because lawyers are trying to figure out what to do, but the silence feels so loud right now,” Hardeman said. “That is part of the tactic, to create fear of the unknown and make people feel isolated.”

Winn said he was advising researchers at his cancer center to continue running experiments and clinical trials. “At this point, things are a little confusing, but their work matters, and they need to continue to move forward,” he said.

As the news of the ban on any work labeled DEIA settled, many leaders in the field of health equity said there was no reason to stop working, pressing for change, or hoping that things will improve. Lisa Cooper, who directs the Johns Hopkins Center for Health Equity and has been a leader in the field for decades, said, “I am advising my younger colleagues to stay the course and persevere,” she said. “I’m reminding them that we’ve been here before, that many of our ancestors fought and died for the rights and freedoms we now have.”

Cooper said she had given a talk years ago on pursuing health equity during turbulent times. “I intend to take that out and refresh it,” she said. 

While the full impact of the executive order is still not clear, Jones said that it may be time for researchers and advocates to prepare for action. That potentially includes civil disobedience, she said. “What are you willing to do? A lot of us look up to civil rights leaders and want to do that work ourselves,” she said. “It’s a good time to see what you’re made of.” 

At Northern Arizona University, Lee said the loss of NIH funding won’t completely end the CARE program, but will make things harder. Other partner organizations have offered to step in and help pay for supplies. A previously scheduled workshop will continue as planned, but she’ll no longer be able to offer participants a small stipend. She also no longer has money to pay the program’s one full-time staffer.

“I am not personally affected. It’s my students and my staff that I am so upset about; they’re the ones being impacted by this,” she said.