Scientists, as a whole, are a resilient and patient bunch. Expanding the frontiers of human knowledge by even an iota can take decades and comes with frequent disappointment. But for many, the uncertainty they’ve confronted over the past year, amid a dizzying array of funding cuts, delays, and other changes by the Trump administration, is unprecedented. It has caused some biomedical researchers to hit their breaking point.
STAT conducted a nationwide survey of nearly 1,000 researchers funded by the National Institutes of Health. The poll revealed that, while some of the administration’s policies have been reversed and others never came to pass, all is not well with the nation’s research enterprise. There are labs that are shutting down, early-career scientists whose futures are in jeopardy, and bonds of trust broken between researchers and the federal government, as well as between scientists and those who benefit from their work.
These impacts can be partially captured through statistics. But numbers alone cannot tell the story of the Chicago-area scientist whose work on ancestry and drug responses was upended when NIH terminated her grant. Or the Ohio researcher on the cusp of launching a lab to study endometriosis, a disease that has defined her own life, who is days away from having her employment contract expire after she lost funding. Or the Baltimore HIV researcher who sees a cruel irony in the administration’s rhetoric on reducing waste when his cancelled grant left data from hundreds of patients in limbo.
STAT interviews with 30 respondents brought the unmistakably human impacts of federal science policy into sharp focus. Here are three of those stories.
Wondering if she fits into the new funding environment
For decades, Minoli Perera has studied how African ancestry can shape responses to medication. But it’s no longer clear that there’s a place for that kind of research — or for her — in the new funding environment created by the Trump administration.
In 2024, Perera, who runs a lab at Northwestern University, received a National Institutes of Health grant to study responses to clopidogrel, a medicine used to prevent heart attacks and strokes in people at high risk. Previous research had found that mutations in a liver enzyme lowered the efficacy of the drug, sold under the brand name Plavix by Bristol Myers Squibb and Sanofi, but most participants in those studies were of European ancestry.
Perera and her collaborators took a different approach. They proposed a study in Puerto Rico that would enroll healthy volunteers and heart disease patients who’d receive the drug, all of whom would be monitored for a year. Many of the island’s residents have a mix of European, African, and indigenous roots, and one aim of the project was to better understand how different levels of these ancestries tracked with the presence of the liver enzyme mutations and the safety and effectiveness of clopidogrel. By doing so, Perera hoped to glean insights that could help other groups as well.
But NIH terminated the grant last year, asserting that it was based on non-scientific categories that promoted diversity, equity, and inclusion. That couldn’t be further from the truth, Perera told STAT, pointing out that the study examined participants’ genomes and didn’t rely on racial categories.
She’d been awarded around $500,000 for the first year of the work. Perera’s group had spent about half of that building out the infrastructure she’d need to process samples and collect data by the time the agency’s termination notice came in.
“That was tax money that might as well have been flushed down the toilet, because you built all of this to do nothing with it,” she said. “I find it just sickening to think about.”
An appeal to NIH was unsuccessful. And a decision by a federal judge, who ruled that thousands of grant terminations by the agency were illegal, didn’t help either, since Perera’s award wasn’t among those named in a pair of lawsuits.
Her lab has no other funding, except for a bit of institutional support that will run out at the end of August. If Perera doesn’t secure a grant before then, she’ll likely have to shut the lab down.
Submitting grant applications that don’t run afoul of NIH’s new priorities has become an exhausting — and, she fears, potentially futile — exercise. Part of the issue is that grant reviewers don’t just evaluate a researcher’s ideas; they evaluate whether an applicant has the background to do what they’re proposing. And after 20 years of studying genomics in minority populations, Perera says, suddenly pivoting to another topic isn’t easy or believable. She has also felt pressure to describe her work in clunky, tortured language in grant applications to avoid phrases that might get flagged by NIH.
“It’s made my grant [applications] sound really stupid to me,” she said. “It sounds dumb because you’re kind of using these vague terms as opposed to being very specific, and in science we’re specific.”
Plans to expand her lab now seem like a distant dream. Perera runs a four-person team consisting of two Ph.D. students, a lab manager, and a data analyst. Her students, like many in the life sciences, have no interest in staying in academia after graduating.
She can’t blame them. Asked whether she’d pursue a faculty position if she were a freshly minted Ph.D., Perera’s reply was swift.
“If I graduated right now? No, absolutely not,” she said. “Not in the United States.”
Derailed ambition to study her own disease
Iris Smith has had a long road to an independent research career. She may now have hit a dead end.
Smith was ecstatic when, in 2020, the NIH awarded her a prestigious Pathway to Independence award, also known as the K99/R00, with up to five years of support for her transition from postdoctoral researcher to independent scientist. But last year, NIH terminated her funding, saying it had come through a program that violated Trump’s executive order to eliminate diversity, equity, and inclusion initiatives.
Her lab was just in its infancy — a team of two, Smith and a precocious high school student — but she had big ambitions for leading a group at the Cleveland Clinic that would study endometriosis. Without funding, however, the academic medical center will not be renewing her employment contract as a staff scientist, which expires at the end of the month.
“I thought, ‘This can’t be how it ends,’” Smith told STAT of her initial reaction, emphasizing she was speaking on behalf of herself and not the Cleveland Clinic.
Faith and prayer have helped her keep the setback in perspective. So has reflecting on how far she has already come.
Smith never planned on a research career; neither of her parents graduated from college, and she didn’t have much career guidance growing up in Houston. She got a job straight out of high school, working as an auditor and then in marketing for an engineering firm. But while the work paid the bills, it didn’t help her understand the invisible war raging inside her body.
Smith has endometriosis, a chronic condition in which cells similar to those that line the uterus pop up in the fallopian tubes, ovaries, and surrounding organs. The disorder, which affects 10% of reproductive age women worldwide, can cause excruciating pain, heavy menstrual bleeding, and infertility.
She wanted to understand why. So at 26, Smith left her job and went off to college, taking out part of her 401(k) to cover tuition. As she sat in biochemistry lectures, she’d often notice she was the oldest person in the room except for the professor. But that didn’t discourage her, and a steady stream of mentors guided her as she went on to complete a Ph.D. and a postdoc.
Consistent federal support helped, too. Smith’s K99/R00 was meant to help her launch a lab that would study PTEN, a tumor suppressor gene, and its connections to endometriosis and ovarian cancer. The award came through MOSAIC, an NIH program started to diversify the biomedical workforce. Smith, who is Hispanic, says her application was no different than a standard K99/R00 submission, except for a short diversity statement where she described plans to mentor trainees from underrepresented groups.
When the award was terminated, Smith didn’t panic. She found a strange comfort in knowing she wasn’t alone; more than 100 researchers had their MOSAIC funding cut short last year, according to Grant Witness, an independent project tracking NIH grant terminations. She applied for a different grant shortly after and was hopeful she’d hear back on a few job offers. “My time will come,” she told herself.
Months later, she’s still in limbo. Smith has a funding application that will soon be reviewed by an NIH advisory council, a panel that makes final recommendations on what research to support. She’s also waiting to hear back from a couple institutions where she has applied for junior faculty positions.
But with many universities dialing back hiring and NIH funding fewer new awards than it has in the past, Smith is facing yet another major career pivot if things don’t work out. She’s not sure what that will look like. Science policy and communication are high up on her list of alternative careers. The one non-negotiable, she says, is that advocating for endometriosis patients will be a core part of whatever next step she takes.
“I’ve done this before. I did it when I left my job and I didn’t know what was on the horizon, and I find myself in those same shoes today,” she said. “Whether I stay in science or not, I know that I’m going to remain educating and advocating for women with this disease.”
Data from his terminated HIV study sits unanalyzed
The Trump administration has justified many of its research cuts as targeting “waste, fraud, and abuse.” Carl Latkin sees another side of that “waste,” having had to stop work on a five-year study a year early when his NIH funding was shut off.
A behavioral scientist at Johns Hopkins University, Latkin was examining how environmental stressors can impact health outcomes for people with HIV. It’s a topic Latkin has studied for nearly three decades with support from the NIH. While his research has spanned the globe, from India, to Ukraine, to the Phillipines, his work focused on how drug use affects those with HIV is an issue that is especially important to Hopkins’ home of Baltimore. Latkin has investigated the impact of HIV on different neighborhoods, the effectiveness of peer educators in disseminating health information, and other interventions to help those with HIV.
The data he collected using the terminated grant, on around 500 people in the Baltimore area, now sits in the cloud, yet to be analyzed.
“We don’t have the funds to clean it,” he said. “We’ll try to figure out ways we may be able to clean the data and do all the data processing, but there’s no funds for it.” He likened the situation to constructing an entire building but not putting a roof on it.
Work like Latkin’s, on the social and behavioral factors that impact health, has been targeted by the administration as part of its hostility to anything seen as related to DEI. The NIH director has called out research on social determinants of health, labeling much of it as unscientific. The program through which Latkin’s grant was funded was terminated because it was intended to promote diversity.
As a tenured professor at a prestigious institution, Latkin is more insulated than many other researchers from the personal ramifications of grant terminations. He doesn’t rely solely on government money to pay his salary and keep his job. But he has had to delay hiring for his lab and cancel or adjust projects because of the lost funding.
He said the targeting of scientific work because of ideology makes it difficult to advise students and other early career researchers to go into his field, which is challenging enough without having to worry about funding. “These are harder problems, because they’re social behavioral problems. I guess the way I look at it, if these were easy problems, we wouldn’t have them,” he said.
“Right now I cannot, in good faith, encourage the best and the brightest students to go into a career of NIH-funded research. Why would you spend 10 years getting trained for some arbitrary and capricious decision, not based on science, not based on public health, based on whims, to destroy certain scientific endeavors,” asked Latkin, who has trained dozens of scientists throughout his career.
The turmoil of the past year has been wasteful in yet another way, he adds, with researchers having to scramble to find alternative sources of support to salvage their research. “People spent so much time during this whole upheaval that was a complete waste of time, focusing on, ‘Okay, what are we going to do? How are we going to do this? What can we do?’” Latkin said. “All the time that should have been spent on science was completely wasted. It was the antithesis of reducing waste, it exponentially increased waste.”
STAT’s coverage of the federal government’s impact on the biomedical workforce is supported by a grant from the Dana Foundation and the Boston Foundation. Our financial supporters are not involved in any decisions about our journalism.