The Trump administration has ordered stoppages on communications and grant applications at U.S. agencies that oversee medical research and drug regulation. Scientists speculate on what it means for public health and drug development.
Two days after President Donald Trump took office, sweeping bans — mostly temporary — went into effect across the U.S. National Institutes of Health on communications, meetings, speaking engagements, research publication, social media updates, and more.
Training workshops for junior scientists were halted mid-stream, and panels set to review grant proposals were canceled at the last minute. Scientists were barred from publishing regulations, guidance documents, grant announcements, social media posts, and press releases — and from purchasing supplies, such as feed for lab animals, liquid for growing cell culture, and liquid nitrogen for sample storage.
The Centers for Disease Control and Prevention was ordered to stop publishing the Morbidity and Mortality Weekly Report (MMWR), which tracks infectious disease outbreaks across the country for the first time in its 60-year history.
On January 21st, the Department of Health and Human Services sent an internal memo to all departments under their purview, including the NIH and the Food and Drug Administration. It detailed directives for all employees in these agencies to freeze all communication through February 1st, “as the new Administration considers its plans for managing federal policy and public communications.” There is also a freeze on hiring, and a blanket work travel ban (with no specified end date) preventing researchers from traveling to conferences to share research findings with colleagues.
This upset comes in step with a total executive ban on DEI work across federal departments, which scientists and trial administrators are worried could have a crippling impact on health- and treatment-related research.
The NIH has an annual budget of more than $47 billion, which in part funds 60,000 grants that are distributed across the work of more than 300,000 researchers in the U.S. Research into Alzheimer’s and dementia, cancer, cardiovascular disease, infectious disease and allergies, and mental health and addiction are all affected.
In the news and across social media, researchers posted their surprise and frustration at the interruptions to their research studies, drug trials, and funding for studies and for scientists’ jobs. Many were alarmed by the highly unusual nature of these orders, which they say are “impulsive” and “poorly thought-out.”
“The impact of the collective executive orders and directives appears devastating,” one senior NIH employee told Science magazine.
“This week we learned that review panels for major Alzheimer’s clinical trials that were meeting in late January have been cancelled,” Suzanne Schindler, a neurologist at the Washington University School of Medicine in St. Louis, wrote to Being Patient. “Due largely to increased funding and support from the NIH, we have made rapid progress over the past five years in the diagnosis and treatment of Alzheimer’s disease. We now have clinically available blood tests for Alzheimer’s, the first FDA-approved disease-modifying treatments that slow progression of early symptomatic Alzheimer’s, and we can foresee a time when Alzheimer’s may be stopped or even prevented. […] These review panels will presumably be re-scheduled, but the uncertainties and delays will negatively affect our research efforts.”
“Shuttering study sections across the
board means that no scientific grants
(Alzheimer’s or otherwise) can be
evaluated for funding.”
While it’s difficult to know the exact consequences, “delays in clinical trials will cause delays in developing new treatments,” Schindler added. Meanwhile, calls to submit grants related to diversity have been abruptly canceled indefinitely, “despite evidence that dementia varies significantly across groups.”
Bryan W. Jones, a neuroscientist at the University of Utah, wrote in a post on the social platform BlueSky, that the bans are bad timing for grant funding. “Most folks do not understand how far in advance the planning and logistics of NIH grants take,” he posted. “We prepare for months or years for these submissions for one of three cycles per year.” He expects these changes to delay grant funding for research “by at least six months.”
Chrystal Starbird, an assistant professor and cancer biologist at the UNC School of Medicine posted that her NIH study section which was set to take place next week was canceled. “It was pretty vague — it said that it’s canceled, that they can’t offer any further explanation at the time, and it thanked us for our service to the NIH,” Starbird told NPR. The halt to these grant reviews, she posted, “has nothing to do with DEI and will have a negative impact on critical cancer research.”
Is this normal?
Is this normal? While a new presidential administration may pause some activities upon taking office, Trump’s NIH changes have provoked a resounding outcry, with many scientists saying that the extent of the pause is unprecedented — even when compared to upsets caused by the COVID-19 pandemic. Science magazine and Stat reported that NIH staff said these measures were more extreme than in previous changeovers and the blanket ban on travel — upending scientific conferences — is unique to the Trump administration.
“I have never heard of such a pause before, except during government shutdowns, when the government is not funded,” Sheeva Azma, CEO of the science communications and policy consulting firm Fancy Comma, LLC, wrote in a message to Being Patient. “Shuttering study sections across the board means that no scientific grants (Alzheimer’s or otherwise) can be evaluated for funding,” she noted.
“It is understandable that a new administration would pause some of the activities of an agency as new leaders are put in place and new priorities are set in motion.” Monica Bertagnolli, the former NIH director who stepped down earlier this month, posted on LinkedIn. “However, preventing NIH from issuing research funding […] even temporarily, can have a devastating effect on our nation’s longer term research productivity and success.”
Undoing hard-won’ progress in clinical trial diversity?
As part of the simultaneous DEI ban, the FDA removed the “Diversity Action Plan” document as well as other documents on its website, which housed a wealth of information about recruitment of non-white participants to clinical trials. This information was originally shared to help ensure drugs are safe and effective across all racial groups.
Scientists are wary of how Trump’s mandates will disrupt work happening at the NIH’s Clinical Trial Center. Staff at this center has had to abruptly cancel meetings with patient groups, stop sending newsletters, and cease distributing information that helps recruit people into clinical trials, including trials for long-awaited drugs.
And with the removal of trial diversity information from the FDA’s website, scientists and companies involved in helping enroll clinical trials have expressed concern about the efficacy of trial enrollment.
“Preventing NIH from issuing research funding
even temporarily, can have a devastating effect on
our nation’s longer-term research
productivity and success.”
Alzheimer’s and dementia occur at disproportionately high rates in women and in Black and Hispanic populations. Drug trials have historically struggle to recruit non-white participants, making it impossible for scientists to understand whether drugs and diagnostic tests work in these higher risk groups. In June of 2024, under the Biden administration, the FDA released draft guidance urging the pharmaceutical industry to enroll more women and more people of color in trials in order to ensure more effective treatments.
“The executive order prohibiting federal work on diversity, equity and inclusion has me worried,” Jason Karlwaish, neurologist and professor of medicine at UPenn posted to LinkedIn. “It could set back our hard-won progress in Alzheimer’s research.”
The Alzheimer’s research center at UPenn has developed a plan and strategies to improve the recruitment of Black participants and other understudied populations, but he worries it may be halted by the executive order.
“Progress in clinical trial diversity is not just a regulatory box to check; it’s a moral imperative and a scientific necessity,” Neil Weisman, president of Continuum Clinical, a company that helps recruit participants for clinical trials, including early Alzheimer’s disease, wrote on LinkedIn. “The wellbeing of millions depends on our commitment to inclusive research practices.”
Being Patient reached out to the NIH for comment in the midst of the ban on NIH external communications and did not hear back. The Alzheimer’s Association declined to comment.
“We hope these disruptions are short-lived, as we know the devastating effects of Alzheimer’s on patients and their families,” Schindler said. “We want to keep making progress towards developing treatments that benefit all patients with dementia.”
Azma and others can’t begin to guess what it means for the coming four-plus years. “It’s unclear whether this action was purely symbolic […] or reflective of a shift in science communication and even science priorities in the second Trump Administration,” Azma wrote. Either way, she said, it poses a “risk to public health.”
If you would like to securely share information about the impacts of the Trump administration’s recent changes on Alzheimer’s or other medical research and treatment, contact Being Patient reporter Simon Spichak securely on Signal at simonspichak.64.
UPDATE: 27 Jan. 2025, 9:50 A.M. ET: This article was updated with additional context around the bans impacting the purchase of lab supplies.
UPDATE: 28 Jan. 2025, 4:40 P.M. ET: This article has been corrected to reflect new reporting that study sections for late-January, not early February were canceled.