“It really is quite chilling,” one of the scientists said. “They are controlling information, causing chaos, disrupting everyone, keeping us off-balance.”

“Whatever people are reading in newspapers, it’s 10 times worse,” the scientist added.

The scientists acknowledge that the NIH, like any institution, is not perfect. It has long been criticised for being too cautious, for example by failing to take a chance on high risk, high reward research proposals.

“I would be lining up at the front of the line to help with a rational process to help improve this place,” another of the scientists said.

An NIH spokesperson said that the agency was complying with an executive order, but that some activities were continuing, including payments for supplies for clinical research studies or ongoing research experiments. And, she added, “travel for the purposes of human safety, human or animal health care, security, biosecurity, biosafety or IT security may continue.”

The spokesperson did not address the purpose of changing so many policies and practices. Dr. Jay Bhattacharya, who awaits confirmation from the Senate to lead the NIH, also did not address these issues at his confirmation hearings this month. But he said in his opening statement that “American biomedical sciences are at a crossroads,” citing Pew survey data that found almost a quarter of Americans had little or no confidence that scientists were acting in the best interests of the American people.

______

The NIH towers over the world’s medical research.

It is where the human genetic code was deciphered, where hepatitis C was discovered, where the virus that causes AIDS was isolated, where the first drug to treat AIDS was discovered and where basic research that helped lead to the COVID-19 vaccines was done. It funded the work decades ago that led to the creation of Ozempic and other new drugs that cause weight loss.

“It is very hard to cite seminal discoveries that were not in some way underwritten by the NIH,” said Dr. Rudolph Leibel, a professor of medicine at Columbia University who, like most medical researchers in the United States, has received NIH funding.

Dr. Francis Collins, a former director of the NIH, said, “If you are taking an FDA-approved drug that is improving the quality or length of your life, there is a 99 per cent chance NIH was involved in the pathway to its discovery.”

Part of the Department of Health and Human Services now led by Robert F. Kennedy Jr., the NIH has a main campus with more than 75 buildings spread over 300 acres in Bethesda, Maryland, where nearly 6,000 scientists work. There are five smaller research centers in other states.

The NIH pays for large clinical trials in fields such as cancer, heart disease and diabetes that have changed medical practice and saved lives.

Its researchers are forbidden from being paid consultants for industry. Many say they are driven by a love of science and a thirst to better humanity through their discoveries.

Dr. Monica Bertagnolli, who stepped down in January as the director of the NIH, said scientists there “are so dedicated to the mission.”

The agency also supports research by an additional 300,000 scientists at more than 2,500 universities and medical centers — research that is also being threatened.

Hundreds of highly competitive grants that support research at universities and medical schools across the country have been cut. Many of the eliminated grants had descriptions that included terms like “minorities,” “transgender,” “AIDS” and “vaccine hesitancy.” But cuts have also affected research on the chronic diseases that Kennedy has made his priority; for instance, funding has been cut for a grant to Columbia University for a study that has followed people who have diabetes or are at risk of developing it for more than a quarter-century. (Those funds may be restored, though, as Columbia agreed last week to a list of demands from the Trump administration.)

A program that supported training scientists from minority groups, those who had disabilities and those from disadvantaged backgrounds has also disappeared.

And research grants that helped pay to train doctoral and postdoctoral students have been slashed. Now universities are rescinding offers to young scientists.

______

Senior scientists within the NIH say their work faces daily disruptions.

Some disruptions are petty: Every NIH employee, no matter how senior, has to send a weekly email to a human resources address with five bullet points stating what was accomplished in the past week. The employees never hear anything back, one senior scientist who has been at the NIH for decades said. But the scientist said that he and other scientists feel a high degree of paranoia about the messages.

Other consequences are more serious: A senior scientist who studies a rare and devastating disorder that affects young children and who is studying a treatment that might help had been invited to consult with doctors caring for such children. At the last minute, he was told he could not go.

“That is completely unacceptable,” that scientist said.

Researchers have also struggled to purchase basic and specialised supplies needed to conduct their work.

One of the senior scientists said that when DOGE recently put a $1 spending limit on government credit cards, it was apparently with no knowledge of how essential the cards were to basic operations. There was no mechanism, for example, to pay for gas for vehicles used to transport patients’ blood samples.

“We had to scramble and beg” to get funds, the scientist said. A few days ago, nonemergency supply orders resumed. But, the scientist said, “now there is a huge backlog.” And the staff that handled orders has been decimated by firings, he added.

“We’ve been told you’d better think weeks ahead about supplies and reagents,” he said.

Other scientists said they had been affected by inconsistent guidelines on purchasing.

“They keep changing the rules,” said the senior scientist who has spent decades at the NIH. “Policies change so quickly and frequently that who knows.”

A different NIH senior scientist said a program he used to order supplies for his lab was closed for a month. Then it opened for a day or so. “A few days later it shut down again,” he said. And it has stayed shut.

He needs mice with special genetic traits for his studies.

“We can’t order mice,” he said. As a result, he said, several years’ worth of work is in jeopardy.

Scientists were chilled by the disruptive firing and rehiring of employees.

The Friday before Presidents Day weekend in February, a senior physician scientist learned that about 20 technicians had been fired in an NIH blood bank where patient samples are analysed, part of an order that eliminated probationary workers who had been in their current position for less than two years. The order also led to the firing of probationary workers who prepare transfusions there.

Also on the list to be fired because they were probationary were the fellows who care for sick patients in the Clinical Center — the NIH’s hospital devoted to clinical research on its Bethesda campus. They included the staff of the intensive care unit and members of the code blue team that responds when a patient has a cardiac arrest.

Supervisors were stunned. These patients were ill. Who is going to care for them?

“We would literally have to airlift patients out,” the senior physician scientist said.

The Clinical Center got a last-minute reprieve after the researchers panicked and protested. DOGE stopped the firing of the intensive care doctors and allowed the NIH to rehire the fired laboratory technicians and blood bank workers.

“It was just unbelievably stressful,” the senior physician scientist said.

Other scientists are learning that no job is safe, even ones held by highly regarded people with seniority.

Tenured staff members at the NIH can no longer take for granted the automatic renewal of their contracts, a senior scientist said. Now some scientists are being put on leave without pay when their contracts run out, and then they wait anxiously to learn if they still have a job.

The effects ripple beyond the NIH, affecting decisions about what sort of research projects by academic scientists can even be considered for funding.

The National Institute of Neurological Disorders and Strokes, on the NIH’s Bethesda campus, had been planning to issue grants to academic scientists to study blood- and brain-scan markers of non-Alzheimer’s dementia and amyotrophic lateral sclerosis. The project’s goal was to diagnose patients earlier and to see whether experimental drugs were helping.

But evaluating these grant proposals requires specialised review at the neurological disorders institute. DOGE’s orders shifted the reviews to another office where reviewers would not have specific expertise.

The result, a senior scientist administrator said, is that “we will not be able to run that kind of program.” Instead, he said, “we will have to do simpler things.”

NIH employees are anxious that they will soon face a mass firing or reduction in force.

No one seems to know who would be fired, what criteria would be used or when it would happen, said the senior scientist who spoke about the problem ordering supplies.

“It’s the not knowing, the chaos” that is torturing people, he said.

“If they said, ‘We are going to RIF administrative senior scientists or anyone over 65 or anyone whose rating was poor,’ it would be much less stressful,” he said, using the acronym for reduction in force.

“But this is like Russian roulette,” he added. “You don’t know what’s coming.”

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