The letters, dated Oct. 10, were sent to four companies and follow a KFF Health News investigation that exposed widespread issues in states using Deloitte-run systems to assess Medicaid eligibility for millions of people. Failures have resulted in the erroneous loss of health coverage and other vital safety-net benefits for low-income people. Malfunctions in those systems can cost millions and take years to fix.

As most states prepare to institute work requirements mandated by the tax and domestic spending law President Donald Trump signed in July, senators wrote it is each company’s responsibility to build functioning systems, “rather than to prioritize their bottom line.”

Democratic senators Ron Wyden of Oregon, Elizabeth Warren of Massachusetts, and Raphael Warnock of Georgia, as well as Sen. Bernie Sanders (I-Vt.), sent the letters to several companies the Centers for Medicare & Medicaid Services identified as eligibility system contractors: Deloitte, GDIT, Gainwell Technologies, and Conduent.

“They’re essentially health care middlemen that are in the business of red tape, and they profit when Americans don’t get health care,” Wyden, the top Democrat on the Senate Finance Committee, which oversees Medicaid, said in an interview.

“They’ve got a history of poor performance when it comes to determining eligibility or in helping Americans enroll in Medicaid,” Wyden said. “Without stronger oversight and real accountability, these contractors are just going to get a jumbo windfall for creating systems that actually harm Americans trying to get health care.”

Spokespeople for the four companies did not provide comments for this article.

As of June, 70.5 million people were enrolled in Medicaid, according to CMS.

A handful of states operate their own Medicaid eligibility and enrollment systems, but most rely on contractors to build and run them. KFF Health News found that Deloitte, a global consultancy that generated $70.5 billion in revenue in fiscal year 2025, dominates this slice of government business. Twenty-five states have awarded Deloitte contracts for eligibility systems. The agreements, in which the company commits to design, develop, implement, or operate state-owned systems, are worth at least $6 billion, dwarfing any of its competitors.

Kinda Serafi, a partner at Manatt Health, is advising states on how to reconfigure their systems to incorporate work requirements.

States are in a “major sprint” to make changes by 2027, she said, and they’re being “inundated” with pitches from vendors looking to secure contracts. It underscores the business opportunity these system changes represent for contractors.

“I think we have to really be vigilant to make sure that these vendors are implementing the requirements consistent with the law,” Serafi said.

Companies sign contracts with state governments, but the federal government pays the bulk of the cost. The federal government covers 90% of states’ costs to develop and implement state Medicaid eligibility systems and 75% of ongoing maintenance and operations expenses, according to federal regulations.

The Senate letters cite problems with Deloitte-run eligibility systems that KFF Health News identified. Among other issues, the Florida eligibility system erroneously cut benefits for new moms, and a problem in Kentucky prevented coverage applications from getting through online, which cost $522,455 and took 10 months to resolve.

“Unfortunately, these are just a few examples of third-party systems’ failure to serve their very function: to reliably and accurately determine an individual’s eligibility for Medicaid coverage and services,” the senators wrote.

The senators asked the companies to respond by Oct. 31 to their questions, such as whether companies’ contracts with states include financial incentives tying payment to the removal of Medicaid enrollees and whether the companies are penalized for coverage terminations made in error. The senators also demanded an accounting of the company’s lobbying expenditures for the past five years and protocols for making system changes.

By 2027, the Congressional Budget Office projected, based on an early version of the bill, 18.5 million Medicaid beneficiaries will have to work or complete other qualifying activities for 80 hours a month to keep their benefits, unless they qualify for an exemption. The CBO estimates that 5.3 million enrollees will lose coverage by 2034.

The new work requirements are just one of several federally mandated Medicaid changes that are forcing states to adapt their eligibility systems.

Medicaid work requirements have been plagued with problems in the few states where they’ve been tested. Medicaid enrollees have been frustrated in trying to navigate byzantine rules and glitchy technology. Work requirements have also come at great cost.

Georgia has not adopted the ACA Medicaid expansion, which has granted benefits to millions of adults earning up to 138% of the federal poverty level. Instead, the state offers benefits to some people earning up to the poverty line who can prove they’re working or participating in similar activities for 80 hours a month. Nearly 110,000 Georgians had applied to the state’s Georgia Pathways to Coverage program through May, but only 9,157 people were enrolled as of mid-August. Under typical ACA expansion rules, 336,000 adults would be eligible for coverage, according to KFF.

The Georgia program has cost $109 million, with $34 million spent on health benefits and more than $20 million allocated to marketing contracts, according to a KFF Health News analysis of state reports. Deloitte built Georgia’s eligibility system and is the primary consultant for the Pathways program.

Before Medicaid work requirements became federal law, Arizona also submitted a request to federal regulators to launch its own version that would apply to roughly 190,000 people.

The state’s application provided insight into the types of system changes states may soon need to make to manage the new federal work requirement.

Arizona Medicaid officials said they would gather information on enrollees’ work hours, training, and education. The state’s eligibility system, which is operated by Accenture, would also need to check whether someone is exempt.

States are in the early stages of determining changes they need to make to implement work requirements.

Tessa Outhyse, a spokesperson for the California Department of Health Care Services, said the state expects upgrades to be processed “through the existing contractual change order process.” State contracts with eligibility companies often set aside millions to cover the cost of changes, but systems may require upgrades beyond the agreed-upon work.

In Missouri, upgrades are expected to cost roughly $33 million, according to a state budget document.

The state has a contract with private company RedMane to handle some of its Medicaid eligibility processing. Missouri plans to hire an additional contractor to ensure it properly institutes Medicaid work requirements, according to Baylee Watts, a spokesperson for Missouri’s Department of Social Services.

Medicaid eligibility contractors “have a lot of leverage and expertise to influence contracts, to win contracts,” Wyden said. “They can do a lot more, to the value of what we’re giving them.”

KFF Health News senior correspondent Renuka Rayasam and correspondent Sam Whitehead contributed to this report.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Federal funding ran out at midnight on Oct. 1, after Congress failed to pass even a stopgap budget while negotiations continued.

Now the question is how long the deadlock will last, with Democrats pitted against Republicans and a presidential administration that has broken with constitutional norms and regularly used political intimidation and primary threats to achieve its ends. Because Republicans hold only a slim majority in the Senate, any deal will need to attract at least a few Democratic votes.

Ramifications from a shutdown on public health systems and health programs will be felt far beyond Washington, D.C., halting almost all of the federal government’s nonessential functions, including many operations related to public health.

Even on Sept. 30, as the clock ticked toward midnight, President Donald Trump renewed threats about mass firings of federal workers if Democrats didn’t acquiesce to GOP demands. Some people worry that such workforce reductions would further enable the administration to undermine federal government operations and reduce the budget impasse to what’s been described as three-dimensional chess or a game of chicken.

Such threats to fire, rather than temporarily suspend, federal workers are “unprecedented,” said G. William Hoagland of the Bipartisan Policy Center. The lack of negotiations between Capitol Hill Republicans and Democrats in advance of the shutdown is also unprecedented in his experience, said Hoagland, a longtime GOP Senate Budget Committee aide.

The stalemate centers largely on health coverage, with Democrats and Republicans clashing over the Affordable Care Act and Medicaid cuts. For Americans with ACA marketplace plans, government subsidies cap the percentage of household income they must pay toward premiums. Lawmakers expanded the subsidies in 2021 and extended that additional help through the end of 2025, and the looming expiration of those expanded subsidies would increase costs and reduce eligibility for assistance for millions of enrollees.

Democrats want a further extension of the subsidies, but many GOP lawmakers are resistant to extending them as is and say that debate must wait until after a budget deal to keep the federal government afloat. Antagonism has grown, with the parties in a pitched battle to convince voters the other party is to blame for the government’s closure.

Said Senate Minority Leader Chuck Schumer on the Senate floor Sept. 30: “Republicans have chosen the losing side of the health care debate, because they’re trying to take away people’s health care; they’re going to let people’s premiums rise.”

But Senate Majority Leader John Thune accused Democrats of attempting to “take government funding hostage.”

The longer a shutdown lasts, the more impacts could be felt. For example, some community health centers would be at risk of closure as their federal funding dries up.

Long-term projects by the Federal Emergency Management Agency to reduce damage from future natural disasters will stop, for example. Rescue services at national parks that stay open will be limited. And at the National Institutes of Health, many new patients awaiting access to experimental treatments may not be admitted to its clinical center.

Entitlement programs such as Medicaid and Medicare will continue, as will operations at the Indian Health Service. But disease surveillance, support from the Centers for Disease Control and Prevention to local and state health departments, and funding for health programs will all be hampered, based on federal health agencies’ contingency plans.

The Department of Health and Human Services is expected to furlough about 40% of its workforce, which has already been downsized by about 20,000 positions under the Trump administration. Across the federal government, roughly 750,000 employees will be furloughed, according to an estimate released Sept. 30 by the Congressional Budget Office, a nonpartisan agency that calculates the cost of legislation. While furloughed employees won’t be working, eventually they will get back pay, totaling about $400 million daily, the CBO estimated.

At HHS, research is expected to pause on the links between drug prices and the Inflation Reduction Act, the major law enacted under former President Joe Biden to boost the economy. Despite reports that Food and Drug Administration Commissioner Marty Makary said the FDA would basically be untouched, the agency won’t accept new drug applications and food safety efforts will be reduced. Federal oversight of a program that helps hospitals save lives and evacuate individuals in environmental crises is expected to stop.

Fewer federal staff will be available to provide help to Medicaid and Medicare enrollees. CDC responses to inquiries about public health matters will be suspended. And the work of a federal vaccine injury program is also anticipated to stop.

Congressional Democrats insist the ACA subsidies must be renewed now because enrollment for the Obama-era health program opens on Nov. 1. Without the extended subsidies, health insurers are warning of double-digit premium hikes for millions of enrollees.

House Democratic Leader Hakeem Jeffries has argued that a “Republican-caused health care crisis” is hanging over Americans as a result of Trump’s new tax-and-spending bill, which adds restrictions to Medicaid that are expected to kick millions off the program. Republicans have also advanced mass layoffs and funding cuts at the nation’s health department and caused widespread confusion over access to some vaccines.

“We’re not going to simply go along to get along with a Republican bill that continues to gut the health care of everyday Americans,” Jeffries told reporters Sept. 29. “These people have been trying to repeal and displace people off the Affordable Care Act since 2010.”

Republicans, meanwhile, have blasted Democrats for holding up funding over the subsidies and say any deal will require concessions.

“If there were some extension of the existing policy, I think it would have to come with some reforms,” Thune, the Senate Republican leader, said Sept. 26.

Such a deal may involve changes to a policy that caps what consumers have to pay for ACA marketplace plans at 8.5% of their income, no matter how much they earn. It could also alter their ability to obtain plans with no premiums, an option that became more widely available because of the beefed-up subsidies.

Adding restrictions to the ACA subsidies is likely to decrease enrollment in the program, which saw declines during the first Trump administration and did not reach 20 million for the first time until last year, a milestone reached in large part due to the subsidies.

Several Republicans have expressed interest in extending the subsidies, including a group of GOP representatives who proposed legislation to do so last month.

Democrats may be betting that the timing of the shutdown will put pressure on their Republican colleagues to come to the negotiation table on the ACA subsidies.

Within days of the government’s closure, ACA enrollees are expected to get notices from their health insurers advising them of steeper premiums. Insurers have said the expiring subsidies have forced those large premium hikes because the healthiest and youngest people are more likely to opt out of coverage when prices go up.

The White House, meanwhile, ramped up its pressure campaign on Democrats. White House press secretary Karoline Leavitt insisted Sept. 29 that Trump wants to keep the government open.

“Our most vulnerable in our society and our country will be impacted by a government shutdown,” she said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

We previously reported a decrease in the number of patients being treated at the NIH Clinical Center from February through April. Since then, we’ve obtained newer data showing the drop has continued.

As of mid-August, the average daily number of patients treated at the hospital was around 60. There has been a steady drop since February, coinciding with the Trump administration’s mass firings of government employees, its broad immigration crackdown, and the gutting of scientific research.

By contrast, last October, about 80 patients a day, on average, were at the hospital, the documents show.

Current and former government workers cite multiple reasons for the decline. An exodus of clinicians, scientists, and other staffers has limited the number of people who can be treated. Researchers are leaving, which means they’re not recruiting patients to come to the NIH for trials. 

And, the workers say, it’s likely that fewer patients who lack legal status in the U.S. are seeking care at the NIH hospital. That’s because of the Trump administration’s immigration policies and the federal government’s tighter rules for visitors from abroad.

In a statement, HHS spokesperson Andrew Nixon said the decline in the number of patients “has been ongoing for years” and the clinical center “remains fully operational and continues to provide world-class clinical research and patient care.”

Are you a cancer patient whose care at the National Institutes of Health Clinical Center in Maryland, or another hospital, has been affected by the Trump administration’s cuts? Are you a family member or caregiver of a cancer patient who has received care at the NIH? We’d like to hear about your experience. Tell us here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The Department of Health and Human Services in late March canceled nearly 700 Centers for Disease Control and Prevention grants nationwide — together worth about $11 billion. Awarded during the covid-19 pandemic, they supported efforts to vaccinate people, reduce health disparities among demographic groups, upgrade antiquated systems for detecting infectious disease outbreaks, and hire community health workers.

Initially, grant cancellations hit blue and red states roughly evenly. Four of the five jurisdictions with the largest number of terminated grants were led by Democrats: California, the District of Columbia, Illinois, and Massachusetts.

But after attorneys general and governors from about two dozen blue states sued in federal court and won an injunction, the balance flipped. Of the five states with the most canceled grants, four are led by Republicans: Texas, Georgia, Oklahoma, and Ohio.

In blue states, nearly 80% of the CDC grant cuts have been restored, compared with fewer than 5% in red states, according to the KFF Health News analysis. Grant amounts reported in an HHS database known as the Tracking Accountability in Government Grants System, or TAGGS, often don’t match what states confirmed. Instead, this analysis focused on the number of grants.

The divide is an example of the polarization that permeates health care issues, in which access to safety-net health programs, abortion rights, and the ability of public health officials to respond to disease threats diverge significantly depending on the political party in power.

In an emailed statement, HHS spokesperson Andrew Nixon said the agency “is committed to protecting the health of every American, regardless of politics or geography. These funds were provided in response to the COVID pandemic, which is long over. We will continue working with states to strengthen public health infrastructure and ensure communities have the tools they need to respond to outbreaks and keep people safe.”

The money in question wasn’t spent solely on covid-related activities, public health experts say; it was also used to bolster public health infrastructure and help contain many types of viruses and diseases, including the flu, measles, and RSV, or respiratory syncytial virus.

“It really supported infrastructure across the board, particularly in how states respond to public health threats,” said Susan Kansagra, chief medical officer of the Association of State and Territorial Health Officials.

The Trump cutbacks came as the U.S. recorded its largest measles outbreak in over three decades and 266 pediatric deaths during the most recent flu season — the highest reported outside of a pandemic since 2004. Public health departments canceled vaccine clinics, laid off staff, and put contracts on hold, health officials said in interviews.

After its funding cuts were blocked in court, California retained every grant the Trump administration attempted to claw back, while Texas remains the state with the most grants terminated, with at least 30. As the CDC slashed grants in Texas, its measles outbreak spread across the U.S. and Mexico, sickening at least 4,500 people and killing at least 16.

Colorado, which joined the lawsuit, had 11 grant terminations at first, but then 10 were retained. Meanwhile, its neighboring states that didn't sue — Wyoming, Utah, Kansas, Nebraska, and Oklahoma — collectively lost 55 grants, with none retained.

In Jackson, Ohio, a half-dozen community health workers came to work one day in March to find the Trump administration had canceled their grant five months early, leaving the Jackson County Health Department half a million dollars short — and them without jobs.

“I had to lay off three employees in a single day, and I haven’t had to do that before. We don’t have those people doing outreach in Jackson County anymore,” Health Commissioner Kevin Aston said.

At one point, he said, the funding helped 11 Appalachian Ohio counties. Now it supports one.

Marsha Radabaugh, one employee who was reassigned, has scaled back her community health efforts: She’d been helping serve hot meals to homeless people and realized that many clients couldn’t read or write, so she brought forms for services such as Medicaid and the Supplemental Nutrition Assistance Program to their encampment in a local park and helped fill them out.

“We would find them rehab places. We’d get out hygiene kits, blankets, tents, zero-degree sleeping bags, things like that,” she said. As a counselor, she’d also remind people “that they're cared for, that they're worthy of being a human — because, a lot of the time, they're not treated that way.”

Sasha Johnson, who led the community health worker program, said people like Radabaugh “were basically a walking human 411,” offering aid to those in need.

Radabaugh also partnered with a food bank to deliver meals to homebound residents.

Aston said the abrupt way they lost the funds — which meant the county unexpectedly had to pay unemployment for more people — could have ruined the health district financially. Canceling funding midcycle, he said, “was really scary.”

HHS Secretary Robert F. Kennedy Jr., a longtime anti-vaccine activist and promoter of vaccine misinformation, has called the CDC a “cesspool of corruption.” At HHS, he has taken steps to undermine vaccination in the U.S. and abroad.

Federal CDC funding accounts for more than half of state and local health department budgets, according to KFF, a health information nonprofit that includes KFF Health News. States that President Donald Trump won in the 2024 election received a higher share of the $15 billion the CDC allocated in fiscal 2023 than those that Democrat Kamala Harris won, according to KFF.

The Trump administration’s nationwide CDC grant terminations reflect this. More than half were in states that Trump won in 2024, totaling at least 370 terminations before the court action, according to KFF Health News’ analysis.

The Columbus, Ohio, health department had received $6.2 million in CDC grants, but roughly half of it — $3 million — disappeared with the Trump cuts. The city laid off 11 people who worked on investigating infectious disease outbreaks in such places as schools and nursing homes, Columbus Health Commissioner Mysheika Roberts said.

She also said the city had planned to buy a new electronic health record system for easier access to patients’ hospital records — which could improve disease detection and provide better treatment for those infected — but that was put on ice.

“We’ve never had a grant midcycle just get pulled from us for no reason,” Roberts said. “This sense of uncertainty is stressful.”

Columbus did not receive its money directly from the CDC. Rather, the state gave the city some funds it received from the federal government. Ohio, led by Republican Gov. Mike DeWine and a Republican attorney general, did not sue to block the funding cuts.

Columbus sued the federal government in April to keep its money, along with other Democratic-led municipalities in Republican-governed states: Harris County, Texas, home to Houston; the Metropolitan Government of Nashville and Davidson County in Tennessee; and Kansas City, Missouri. A federal judge in June blocked those cuts.

As of mid-August, Columbus was awaiting the funds. Roberts said the city won’t rehire staff because the federal funding was expected to end in December.

Joe Grogan, a senior scholar at the University of Southern California’s Schaeffer Institute and former director of the White House Domestic Policy Council in Trump’s first term, said state and local agencies “are not entitled” to the federal money, which was awarded “to deal with an emergency” that has ended.

“We were throwing money out the door the last five years,” Grogan said of the federal government. “I don’t understand why there would ever be a controversy in unspent covid money coming back.”

Ken Gordon, Ohio Department of Health spokesperson, wrote in an email that the $250 million in grants lost had helped with, among other things, upgrading the disease reporting system and boosting public health laboratory testing.

Some of the canceled HHS funding wasn’t slated to end for years, including four grants to strengthen public health in Indian Country, a grant to a Minnesota nonprofit focused on reducing substance use disorders, and a few to universities about occupational safety, HIV, tuberculosis, and more.

Brent Ewig, chief policy and government relations officer for the Association of Immunization Managers, said the cuts were “the predictable result of ‘boom, bust, panic, neglect’ funding” for public health.

The association represents 64 state, local, and territorial immunization programs, which Ewig said will be less prepared to respond to disease outbreaks, including measles.

“The system is blinking red,” Ewig said.

Methodology

KFF Health News’ analysis of Centers for Disease Control and Prevention grants sought to answer four questions: 1) How many grants have been terminated in the U.S. under the Trump administration since March? 2) Which states saw the most grants cut? 3) What were the grants for? and 4) Did the grant terminations affect blue, red, and purple states differently? This follows a similar analysis by KFF Health News for an article on nationwide NIH grant terminations.

Our primary data source was a Department of Health and Human Services website showing grant terminations. We compared an initial list of grant terminations from April 3 with one from July 11 to determine how many grants had been restored. The USAspending.gov database helped us track grants by state.

To classify states politically, we followed the same steps from our April coverage of National Institutes of Health grant terminations. States were “blue” if Democrats had complete control of the state government or if the majority of voters favored Democratic presidential candidates in the last three elections (2016, 2020, 2024). “Red” states were classified similarly with respect to the Republican Party. “Purple” states had politically split state governments and/or were generally considered to be presidential election battleground states. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was classified as blue using similar methods.

This analysis does not account for potential grant reinstatements in local jurisdictions where the funds were awarded indirectly rather than directly from the CDC; it accounts only for the recipients’ location, and excludes grants terminated from Compacts of Free Association states and other foreign entities that received grants directly from the CDC. At least 40 CDC grants were terminated that were meant for global health efforts or assisting public health activities in other nations following the Trump administration’s order for the CDC to withdraw support for the World Health Organization.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The number of people receiving treatment at the National Institutes of Health Clinical Center — the renowned research hospital that cares for patients with rare or life-threatening diseases — has tumbled under the second Trump administration, according to government documents and interviews with current and former NIH employees.

NIH documents viewed by KFF Health News show a pronounced decline in patients at the 200-bed hospital from February through April, a time that coincides with the Department of Health and Human Services’ mass firings of government employees, the gutting of scientific research, and the administration’s broad crackdown on immigration. The average number of patients being treated daily during that time hovered between 60 and 80, with the April numbers falling to the lower end of that range. By contrast, in October, about 80 patients a day on average were at the hospital.

The number of cancer clinical trial participants at the hospital as of July was down about 20% from last year, one NIH cancer scientist said. KFF Health News agreed not to identify the scientist and others who participated in this article who were not authorized to speak to the press and feared retaliation.

The numbers “really don’t look too good,” Pius Aiyelawo, acting CEO of the clinical center, said during a May 23 meeting of the NIH Clinical Center Research Hospital Board.

As of April 30, the average number of patients in the hospital per day had declined by 5.7% from the same period a year ago.

Adults and children with cancer, people who need bone marrow transplants, and people with rare diseases or infections are among the patients who receive care at no charge at the NIH hospital, according to former officials. Clinicians there provide potentially lifesaving treatments as part of clinical trials, often to people who have run out of options.

Research at the hospital has also led to breakthroughs about cancer, traumatic brain injury, and AIDS, among other ailments. James Gilman, a physician who was CEO of the clinical center from 2017 until retiring in January, said the center has driven important advances against disease “that couldn’t have happened anywhere else.”

Former officials said the drop in patients this year is a consequence of the upheaval the Trump administration has caused at the NIH, the world’s largest public funder of scientific research.

Current and former employees say an exodus of clinicians, scientists, and other staffers has limited how many patients can be treated. Morale has tanked because of widespread firings and the administration’s cancellation of grants that funded research into health disparities, vaccines, the health of LGBTQ+ people, and more. Contracts have been cut, and scientists have seen delays in getting essential supplies for clinical research.

“Every day seems to be some type of breaking point,” one NIH worker said.

During the May board meeting, a video of which KFF Health News viewed, Aiyelawo attributed the decrease in patients coming to the hospital to the departure of NIH investigators — the researchers on studies — and less patient recruitment. He also noted 11 recent departures of clinical center staffers. They included Christine Grady, a nurse who led the center’s bioethics department and the wife of Anthony Fauci, the former head of the NIH’s infectious diseases institute who became a lightning rod for conservatives during the covid pandemic.

HHS has fired more than 1,200 NIH employees this year as part of its purge of the federal workforce, but the true number of departures is almost certainly higher. Others have opted for early retirement or quit because they opposed the Trump administration’s orders.

Gilman said the NIH hospital relies on a “very complex ecosystem and network to find patients who are not too sick” to potentially be enrolled in a clinical trial. When researchers leave, “those patients are lost,” he said.

The clinical center’s 2025 annual report said there were roughly 1,500 research studies underway in 2024, including studies focused on cancer, infectious disease, heart and lung conditions, and blood disorders. Clinical trials accounted for about half.

The National Cancer Institute — which is the largest of the NIH’s 27 institutes and has been crippled by cuts and chaos this year — typically has the most patients needing inpatient care, Gilman said.

“What has happened here since January has been a pretty traumatic time for that ecosystem,” he said, “and there are pieces of it that will take a long time to rebuild, if indeed they get a chance to rebuild.”

During the May board meeting, Aiyelawo said NIH Director Jay Bhattacharya “is very aware” that fewer people are getting treated at the hospital “and we’re doing everything we can to be able to get those numbers up.”

The drop in patients this year isn’t isolated to people needing inpatient care, NIH documents show. As of the end of April, outpatient visits were down 8.5% from the same period in the prior fiscal year. The number of new patients overall had declined by 6.7%, to about 3,370 people.

In response to questions, HHS spokesperson Andrew Nixon wrote in an emailed statement that the clinical center “remains fully operational and continues to provide world-class clinical research and patient care. Every day, patients from across the country and around the globe come here to participate in cutting-edge studies that drive scientific discovery and improve health outcomes.”

“As the crown jewel of research and discovery, the Clinical Center is a top priority” under Bhattacharya’s leadership, Nixon said. “We are committed to fully leveraging its capabilities as the nation’s hub for clinical research innovation. Our focus remains on empowering the research community and advancing the critical mission of making medical breakthroughs possible right here on the NIH campus.”

Even before President Donald Trump began his second term, the hospital had struggled with lagging patient numbers. Before the pandemic, it averaged more than 110 patients daily. Those numbers plummeted starting in 2020, government documents show. During the 2022 fiscal year,  there were about 73 patients, on average, in the hospital per day.

While yearly figures have increased since then, they have not gone back to pre-pandemic levels. NIH documents show that the hospital saw an average of roughly 81 patients a day during fiscal 2024, which ended in September. Still, one NIH worker said: “This is a manufactured crisis. Covid was not.”

The federal government has also moved to tighten rules surrounding visitors from abroad, which likely limits how many people living in the U.S. without legal status would come to the NIH for care.

Before Trump, officials developed a new visitor policy for the NIH that required people who aren’t U.S. citizens or legal permanent residents to register online before arriving. But its implementation was delayed, Gilman said. It did not launch until late January, after President Joe Biden was no longer in office and around the time the Trump administration began its deportation operation.

The Department of Homeland Security has carried out widespread raids and arrests and allowed immigration authorities unprecedented access to various federal data sources — including tax information and Medicaid recipients’ personal data — as part of its immigration enforcement efforts.

The clinical center’s most recent annual report said around 600 patients in 2024 were from abroad.

Now “international patients are terrified to come,” said one recently departed clinician. “They don’t know what will happen to them.”

Are you a cancer patient whose care at the National Institutes of Health Clinical Center in Maryland, or another hospital, has been affected by the Trump administration’s cuts? Are you a family member or caregiver of a cancer patient who has received care at the NIH? We’d like to hear about your experience. Tell us here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The National Cancer Institute, long credited with driving down U.S. cancer death rates, is facing massive upheaval as the Trump administration imposes deep funding cuts. Grants have been abruptly terminated, key employees laid off, and essential patient resources left unmaintained.

Hundreds of current and former NIH employees have protested through the Bethesda Declaration, warning that these cuts could stall decades of progress in cancer research.

KFF Health News correspondent Rachana Pradhan appeared on WAMU’s “Health Hub” on July 23 to explain what current and former employees of the agency have to say.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

NCI, which has long benefited from enthusiastic bipartisan support, now faces an exodus of clinicians, scientists, and other staffers — some fired, others leaving in exasperation.

After years of accelerating progress that has reduced cancer deaths by a third since the 1990s, the institute has terminated funds nationwide for research to fight the disease, expand care, and train new oncologists. “We use the word ‘drone attack’ now regularly,” one worker said of grant terminations. “It just happens from above.”

The assault could well result in a perceptible slowing of progress in the fight against cancer.

Nearly 2 million Americans are diagnosed with malignancies every year. In 2023, cancer killed more than 613,000 people, making it the second-leading cause of death after heart disease. But the cancer fight has also made enormous progress. Cancer mortality in the U.S. has fallen by 34% since 1991, according to the American Cancer Society. There are roughly 18 million cancer survivors in the country.

That trend “we can very, very closely tie to the enhanced investment in cancer science by the U.S. government,” said Karen Knudsen, CEO of the Parker Institute for Cancer Immunotherapy and a globally recognized expert on prostate cancer.

“We’re winning,” Knudsen said. “Why we would let up, I really don’t understand.”

This article is based on interviews with nearly two dozen current and former NCI employees, academic researchers, scientists, and patients. KFF Health News agreed not to name some government workers because they are not authorized to speak to the news media and fear retaliation.

“It’s horrible. It’s a crap show. It really, really is,” said an NCI laboratory chief who has worked at the institute for three decades. He’s lost six of the 30 people in his lab this year: four scientists, a secretary, and an administrator.

“If we survive I will be somewhat surprised,” he said.

After a mandate by the Department of Health and Human Services and the Department of Government Efficiency to slash contract spending by more than a third, the cancer institute is cutting contracts to maintain precious biological specimens used in its research, according to three scientists. “The required contract cuts are going to be devastating,” a senior scientist said.

On the NCI campus in Bethesda, Maryland, scientists describe delays in getting essential supplies — “literally anything that goes into a test tube or a petri dish,” a recently departed clinician said — because of staffing cuts and constant changes in policies about what they can order.

Even the websites that publish new evidence on cancer treatment and diagnosis aren’t being updated, because HHS fired workers who managed them. And when NCI scientists do communicate with outsiders, what they say has been severely restricted, according to documents viewed by KFF Health News. Forbidden topics include mass firings, President Donald Trump’s executive orders, and “DEIA” – diversity, equity, inclusion, and accessibility.

The turmoil at the National Institutes of Health’s largest arm could haunt the country and the world for years to come.

“I really, really don’t understand what they’re trying to achieve,” said Sarah Kobrin, chief of NCI’s health systems and interventions research branch. “It just doesn’t make sense.”

“Efforts that are lifesaving now are being curtailed,” one scientist said. “People will die.”

Years of Bipartisan Support

Initially, some workers said, they thought the cancer institute might be spared. HHS Secretary Robert F. Kennedy Jr. has called chronic disease — cancer is one — “an existential threat” to the country. Cancer research, with multiple NCI-funded breakthroughs in genetics and immunotherapy, has sidestepped the political minefields around other public health issues, like vaccination.

“People who care about cancer might be the biggest lobby in the country,” said Paul Goldberg, editor and publisher of The Cancer Letter, which has monitored oncology science and policy since 1973.

Count Mike Etchamendy, 69, of Big Bear Lake, California, as part of that lobby. Since 2013 he’s flown to the East Coast scores of times to participate in five clinical trials at the cancer wing of NIH’s Clinical Center.

“They call it the House of Hope,” Etchamendy said. Between drugs, therapeutic vaccines, and expert treatment for his rare bone cancer, called chordoma, he said, he believes he’s gained at least 10 years of life. He’s proud to have served as a “lab rat for science” and worries about NCI’s future.

“People come from all over the world to learn there,” Etchamendy said. “You cut funding there, you’re going to cut major research on cancer.”

In response to a list of detailed questions from KFF Health News about the cuts and chaos at NCI, HHS spokesperson Andrew Nixon said the reporting amounted to a “biased narrative” that “misrepresents a necessary transformation at the National Cancer Institute.” Nixon declined to elaborate but said research into cancer and other health conditions continues to be a high priority “for both NIH and HHS.”

“We are refocusing resources on high-impact, evidence-based research — free from ideological bias or institutional complacency. While change can be uncomfortable for those invested in the status quo, it is essential to ensure that NCI delivers on its core mission,” he said.

Much of NCI’s work is authorized by the National Cancer Act of 1971, which expanded its mandate as part of President Richard Nixon’s “War on Cancer.” Three of four of the cancer institute’s research dollars go to outside scientists, with most of the remainder funding more than 300 scientists on campus.

And Congress was generous. Harold Varmus, one of more than 40 Nobel laureates whose work was funded by NCI, said budgets were usually handsome when he was NIH director from 1993 through 1999. President Bill Clinton “would say to me, ‘I’d like to give you a bigger increase, Harold, but your friends in Congress will bring it up.’ He’d offer me a 5% increase,” Varmus recalled, but “I’d end up getting more like 10%” from Congress.

Congress appropriated $2 billion to NCI in fiscal 1993. By 2025, funding had risen to $7.22 billion.

Rat on Your Colleagues

During a May 19 town hall meeting with NIH staff members, Jay Bhattacharya, the institute’s new director, equivocated when asked about funding cuts for research into improving the health of racial and ethnic minorities — cuts made under the guise of purging DEI from the government.

According to a recording of the meeting obtained by KFF Health News, Bhattacharya said the agency remained “absolutely committed to advancing the health and well-being of every population, including minority populations, LGBTQ populations, and every population.”

Research addressing the health needs of women and minorities is “an absolute priority of mine,” he said. “We’re going to keep funding that.” But a study considering whether “structural racism causes poor health in minority populations” is “not a scientific hypothesis.”

“We need scientific ideas that are actionable, that improve the health and well-being of people, not ideological ideas that don’t have any chance of improving the health and well-being of people,” he said. That comment angered many staffers, several said in interviews. Many got up and walked out during the speech, while others, watching remotely, scoffed or jeered.

Several current and former NCI scientists questioned Bhattacharya’s commitment to young scientists and minorities. Staffing cuts early in the year eliminated many recently hired NCI scientists. At least 172 National Cancer Institute grants, including for research aimed at minimizing health disparities among racial minorities or LGBTQ+ people, were terminated and hadn’t been reinstated as of June 16, according to a KFF Health News analysis of HHS documents and a list of grant terminations by outside researchers.

Those populations have higher rates of certain cancer diagnoses and are more likely to receive diagnoses later than white or heterosexual people. Black people are also more likely to die of many cancer types than all other racial and ethnic groups.

Jennifer Guida, a researcher who focuses on accelerated aging in cancer survivors, said she recently left NCI after a decade in part because of the administration’s DEI orders. According to several workers and internal emails viewed by KFF Health News, those included an HHS edict in January to report their colleagues who worked on such issues, and flagging grants that included DEI-related terms because they didn’t align with Trump’s priorities.

‘I’m not going to put my name attached to that. I don’t stand for that. It’s not OK,” said Guida, who added that it amounted to a “scrubbing of science.”

Racial discrimination is one factor that contributes to accelerated aging. “There are a growing number of cancer survivors in the U.S.,” Guida said, and “a significant number of those people who will become cancer survivors are racial and ethnic minorities.”

“Those people deserve to be studied,” she said. “How can you help those people if you’re not even studying them?”

In May, NCI informed leaders of the Comprehensive Partnerships to Advance Cancer Health Equity, a program that links 14 large U.S. cancer centers with minority-serving colleges and universities, that their funding would be cut. The project’s Notice of Funding Opportunity — the mechanism the government uses to award grants — had been suddenly taken offline, meaning NCI staffers couldn’t award future funding, according to three sources and internal communications viewed by KFF Health News. These “unpublishings” have often occurred without warning, explanation, or even notification of the grantee that no more money would be coming.

The cancer partnerships have trained more than 8,500 scientists. They’re designed to address widely documented disparities in cancer care by having top medical schools place students from rural, poor, and minority-serving schools and community clinics in research, training, and outreach.

Research shows that patients from racial and ethnic minorities receive better medical care and have improved outcomes when their clinicians share their background.

“I’m from an immigrant family, the first to graduate in my family,” said Elena Martinez, a professor of family medicine and public health at the University of California-San Diego, who leads one of the partnerships with colleagues at largely Hispanic San Diego State University. “I wouldn’t be here without this kind of program, and there won’t be people like me here in the future if we cut these programs.”

Silencing the Science Communicators

In early April, when the dust settled after mass firings across HHS, workers in NCI’s communications office were relieved they still had their jobs.

It didn’t last. A month later, HHS fired nearly all of them, three former workers said. Combined with retirements and other departures, a skeleton crew of six or seven remain of about 75 people. “We were all completely blindsided,” a fired worker said. NCI leadership “had no idea that this was happening.”

As a result, websites, newsletters, and other resources for patients and doctors about the latest evidence in cancer treatment aren’t being updated. They include Cancer.gov and NCI’s widely used Physician Data Query, which compile research findings that doctors turn to when caring for cancer patients.

Gary Kreps, founding director of the Center for Health and Risk Communication at George Mason University, said he relied on Physician Data Query when his father was diagnosed with advanced stomach cancer, taking PDQ printouts when he met with his dad’s doctors. “It made a huge difference,” Kreps said. “He ended up living, like, another three years” — longer than expected — “and enjoyed the rest of his life.”

As of May 30, banners at the top of the Cancer.gov and PDQ websites said, “Due to HHS restructuring and reduction in workforce efforts, the information on this website may not be up to date and pages will indicate as such.” The banners are gone, but neither website was being updated, according to a fired worker with knowledge of the situation.

Outdated PDQ information is “really very dangerous,” Kreps said.

Wiping out NCI’s communications staff makes it harder to share complex and ever-changing information that doctors and patients need, said Peter Garrett, who headed NCI’s communications before retiring in May. Garrett said he left because of concerns about political interference.

“The science isn’t finished until it’s communicated,” he said. “Without the government playing that role, who’s going to step in?”

A Budget To ‘Destroy Clinical Research’

Following court decisions that blocked some NIH grant cancellations or rendered them “void” and “illegal,” NIH official Michelle Bulls in late June told staffers to stop terminating grants. However, NCI workers told KFF Health News they continue to review grants flagged by NIH to assess whether they align with Trump administration priorities. Courts have ordered NIH to reinstate some terminated grants, but not all of them.

At NCI and across NIH, staffers remain anxious.

The White House wants Congress to slash the cancer institute’s budget by nearly 40%, to $4.53 billion, as part of a larger proposal to sharply reduce NIH’s fiscal 2026 coffers.

Bhattacharya has said he wants NIH to fund more big, breakthrough research. Major cuts could have the opposite effect, Knudsen said. When NCI funding shrinks, “it’s the safe science that tends to get funded, not the science that is game changing and has the potential to be transformative for cures.”

Usually the president’s budget is dead on arrival in Congress, and members of both parties have expressed doubt about Trump’s 2026 proposal. But agency workers, outside scientists, and patients fear this one may stick, with devastating impact.

It would force NCI to suspend all new grants or cut existing grants so severely that the gaps will close many labs, said Varmus, who ran NCI from 2010 to 2015. Add that to the impact on NCI’s contracts, clinical trials, internal research, and salaries, he said, and “you can reliably say that NCI will be unable to keep up in any way with the promise of science that’s currently underway.”

The NCI laboratory chief, who has worked at the institute for decades, put it this way: “If the 40% budget cut passes in Congress, it will destroy clinical research at NCI.”

KFF Health News correspondent Rae Ellen Bichell contributed to this report.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

The Texas mother of two was diagnosed with a rare and potentially fatal heart condition after having her second child. In addition to avoiding another pregnancy that could be life-threatening, Henderson has to make sure the contraception she uses doesn’t jeopardize her health.

For more than a decade, a small team of people at the Centers for Disease Control and Prevention worked to do just that, issuing national guidelines for clinicians on how to prescribe contraception safely for millions of women with underlying medical conditions — including heart disease, lupus, sickle cell disease, and obesity. But the Department of Health and Human Services, which oversees the CDC, fired those workers as part of the Trump administration’s rapid downsizing of the federal workforce.

It also decimated the CDC’s larger Division of Reproductive Health, where the team was housed — a move that clinicians, advocacy groups, and fired workers say will endanger the health of women and their babies.

Clinicians said in interviews that counseling patients about birth control and prescribing it is relatively straightforward. But for women with conditions that put them at higher risk of serious health complications, special care is needed.

“We really were the only source of safety monitoring in this country,” said one fired CDC staffer who worked on the guidelines, known as the U.S. Medical Eligibility Criteria for Contraceptive Use, or MEC. “There’s no one who can actually do this work.” KFF Health News agreed not to name this worker and others who were not authorized to speak to the press and feared retaliation.

The stakes are high for people like Henderson. About six weeks after having her second baby, she said, her heart “was racing.”

“I feel like I’m underwater,” Henderson said. “I felt like I couldn’t breathe.” She eventually went to the hospital, where she was told she was “in full-blown heart failure,” she said.

Henderson was diagnosed with peripartum cardiomyopathy, an uncommon type of heart failure that can happen toward the end of pregnancy or shortly after giving birth. Risk factors for the condition include being at least 30 years old, being of African descent, high blood pressure, and obesity.

The CDC contraception guidelines say that combined hormonal contraception, which contains both estrogen and progestin to prevent pregnancy, can pose an “unacceptable health risk” for most women with peripartum cardiomyopathy, also known as PPCM. For some women with the diagnosis, a birth control injection commonly known by the brand name Depo-Provera also carries risks that outweigh its benefits, the guidelines show. Progestin-only pills or a birth control implant, inserted into an arm, are the safest.

Henderson said her cardiologist had to greenlight which contraception she could use. She uses a progestin-only birth control implant that’s more than 99% effective at preventing pregnancy.

“I didn’t know that certain things can cause blood clots,” Henderson said, “or make your heart failure worse.” Heart failure is a leading cause of maternal mortality and morbidity in the U.S., with PPCM accounting for up to 70% of heart failure cases during pregnancy.

Sweeping HHS layoffs in late March and early April gutted the CDC’s reproductive health division, upending several programs designed to protect women and infants, three fired workers said.

About two-thirds of the division’s roughly 165 employees and contractors were cut, through firings, retirements, or reassignments to other parts of the agency, one worker said.

Among those fired were CDC staffers who carried out the Pregnancy Risk Assessment Monitoring System, a survey established nearly 40 years ago to improve maternal and infant health outcomes by asking detailed questions of women who recently gave birth. The survey was used “to help inform and help reduce the contributing factors that cause maternal mortality and morbidity,” a fired worker said, by allowing government workers to examine the medical care people received before and during pregnancy, if any, and other risk factors that may lead to poor maternal and child health.

The firings also removed CDC workers who collected and analyzed data on in vitro fertilization and other fertility treatments.

“They left nothing behind,” one worker said.

U.S. contraception guidelines were first published in 2010, after the CDC adapted guidance developed by the World Health Organization. The latest version was published last August. It includes information about the safety of different types of contraception for more than 60 medical conditions. Clinicians said it is the premier source of evidence about the safety of birth control.

“It gave us so much information which was not available to clinicians at their fingertips,” said Michael Policar, a physician and professor of obstetrics, gynecology, and reproductive sciences at the University of California-San Francisco School of Medicine.

“If you’ve got a person with, let’s say, long-standing Type 2 diabetes, someone who has a connective-tissue disease like lupus, someone who’s got hypertension or maybe has been treated for a precursor to breast cancer — something like that? In those circumstances,” Policar said, “before the MEC it was really hard to know how to manage those people.”

The CDC updates the guidelines comprehensively roughly every five years. On a weekly basis, however, government workers would monitor evidence about patients’ use of contraception and the safety of various methods, something they were doing when HHS abruptly fired them this spring, two fired workers said. That work isn’t happening now, one of them said.

Sometimes the agency would issue interim changes outside the larger updates if new evidence warranted it. Now, if something new or urgent comes up, “there’s not going to be any way to update the guidelines,” one fired worker said.

In 2020, for example, the CDC revised its contraception recommendations for women at high risk of HIV infection, after new evidence showed that various methods were safer than previously thought.

HHS spokesperson Emily Hilliard declined to say why CDC personnel working on the contraception guidelines and other reproductive health issues were fired, or answer other questions raised by KFF Health News’ reporting.

Most women of reproductive age in the U.S. use contraception. CDC data from 2019, the most recent available, shows that more than 47 million women ages 15 to 49 relied on birth control. About 1 in 10 used long-acting methods such as intrauterine devices and implants; 1 in 7 used oral contraception.

The latest guidelines included updated safety recommendations for women who have sickle cell disease, lupus, or PPCM, and those who are breastfeeding, among others. Clinicians are now being told that combined hormonal contraception poses an unacceptable health risk for women with sickle cell disease, because it might increase the risk of blood clots.

“It can really come down to life or death,” said Teonna Woolford, CEO of the Sickle Cell Reproductive Health Education Directive, a nonprofit that advocates for improved reproductive health care for people with the disease.

“We really saw the CDC guidelines as a win, as a victory — they’re actually going to pay attention,” she said.

The 2024 guidelines also for the first time included birth control recommendations for women with chronic kidney disease. Research has shown that such women are at higher risk of serious pregnancy complications, including preeclampsia and preterm delivery. Their medical condition also increases their risk of blood clots, which is why it’s important for them not to use combined hormonal contraception, fired CDC workers and clinicians said.

The CDC information “is the final say in safety,” said Patty Cason, a family nurse practitioner and president of Envision Sexual and Reproductive Health. Having only static information about the safety of various types of birth control is “very scary,” she said, because new evidence could come out and entirely new methods of contraception are being developed.

Henderson said it took her heart two years to recover. She created the nonprofit organization Let’s Talk PPCM to educate women about the type of heart failure she was diagnosed with, including what forms of birth control are safe.

“We don’t want blood clots, worsening heart failures,” Henderson said. “They already feel like they can’t trust their doctors, and we don’t need extra.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

A letter sent June 9 to agency director Jay Bhattacharya, signed by more than 300 current or former workers — including more than a quarter who signed their names publicly — is an extraordinary rebuke of the Trump administration’s actions against the NIH this year. And that is no small list. They include terminating hundreds of grants funding scientific and biomedical research across the country, firing more than 1,000 employees, tanking funding for young scientists, and moving to end billions in funds to partner research institutions overseas, a move current and former NIH workers say will harm work to combat rare cancers and infectious diseases, among other research. 

“It’s been soul-crushing,” said one NIH worker who signed the letter, whom KFF Health News agreed not to name because they are not authorized to speak to the press and fear retaliation. “This matters for everyone who has ever been sick or knows anyone who has.” 

Bhattacharya received the letter — which he said “has some fundamental misconceptions about the policy directions the NIH has taken in recent months” — a day before testifying in front of a Senate subcommittee about the Trump White House’s budget proposal for the NIH. That proposal seeks to slash the agency’s funding by 40% and collapse its 27 institutes and centers into eight. And it made for some fireworks with lawmakers, particularly Democrats, who lodged numerous complaints. 

“What the Trump administration is doing to NIH right now is, frankly, catastrophic,” Sen. Patty Murray (D-Wash.) said at the Senate Appropriations subcommittee hearing June 10. 

Bhattacharya said that the budget “is a collaboration” with Congress, making it clear that the White House’s proposal is far from set in stone. But he also took responsibility for specific actions the administration has taken without congressional involvement. Asked by Sen. Tammy Baldwin (D-Wis.) who is making decisions to withhold grant funding, Bhattacharya said, “I’ve made those decisions” to “move away from politicized science.” 

In a town hall meeting with NIH employees in May, a recording of which KFF Health News obtained, Bhattacharya contended that certain NIH-supported research focused on racial and ethnic minorities is “ideological in nature, and that doesn’t advance the health and well-being of anybody” — a characterization that NIH workers dispute. 

“They’re actually doing the very thing that they say they’re not doing,” one worker said, “and cutting whole areas of science that are critical to understanding how to improve patient care and patient outcomes.”

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

In a June 9 letter to NIH Director Jay Bhattacharya, NIH workers said they felt “compelled to speak up when our leadership prioritizes political momentum over human safety and faithful stewardship of public resources.”

“For staff across the National Institutes of Health (NIH), we dissent to Administration policies that undermine the NIH mission, waste public resources, and harm the health of Americans and people across the globe,” they said.

The letter is an extraordinary rebuke of the Trump administration’s actions against the NIH, which include: terminating hundreds of grants funding scientific and biomedical research; firing more than 1,000 employees this year; and moving to end billions in funds to partner institutions overseas, a move current and former NIH workers say will harm research on rare cancers and infectious diseases, as well as research that aims to minimize tobacco use and related chronic illnesses, among other areas.

Some NIH workers signed their names publicly, openly daring to challenge a president who has sought to purge the government of employees he views as disloyal to him. Others signed anonymously.

“It’s about the harm that these policies are having on research participants and American public health, and global public health,” said Jenna Norton, who works at the National Institute of Diabetes and Digestive and Kidney Diseases, one of NIH’s 27 institutes. “There are research participants who generously decide to donate their time and literal pieces of their body, with the understanding that that service is going to help advance research for diseases that they are living with and help the next person who comes along with that disease.”

“These policies are preventing us from delivering on the promise we made to them and honoring the commitment that they made, and putting them at risk,” she said.

The workers wrote that they hope Bhattacharya welcomes their criticisms given his vows to prioritize “academic freedom” and to respect dissenting views as leader of the NIH, which is based in Bethesda, Maryland. Its authors called it the “Bethesda Declaration” — a play on the controversial “Great Barrington Declaration” that Bhattacharya co-authored during the covid-19 pandemic.

Bhattacharya’s declaration advocated against lockdown measures and proposed that widespread immunity against covid could be achieved by allowing healthy people to get infected with the virus and instituting protective measures only for medically vulnerable people. It was criticized at the time by Francis Collins, then-director of the NIH, who called Bhattacharya and his co-authors “fringe epidemiologists,” according to emails the American Institute for Economic Research obtained through a Freedom of Information Act request.

In their letter, NIH workers demanded that Bhattacharya restore grants that were “delayed or terminated for political reasons.” Those grants funded a range of projects, including those addressing Alzheimer’s disease, ways to boost vaccination rates, and efforts to combat health disparities or health misinformation.

“Academic freedom should not be applied selectively based on political ideology. To achieve political aims, NIH has targeted multiple universities with indiscriminate grant terminations, payment freezes for ongoing research, and blanket holds on awards regardless of the quality, progress, or impact of the science,” the NIH workers wrote.

The funding terminations, they said, “throw away years of hard work and millions of dollars,” “risk participant health,” and “damage hard-earned public trust, counter to your stated goal to improve trust in NIH.”

In an emailed comment, Bhattacharya said, “The Bethesda Declaration has some fundamental misconceptions about the policy directions the NIH has taken in recent months, including the continuing support of the NIH for international collaboration. Nevertheless, respectful dissent in science is productive. We all want the NIH to succeed.”

The NIH’s nearly $48 billion budget makes it the world’s largest public funder of scientific research. Its work has led to countless scientific discoveries that have helped improve health and save lives around the globe. But it hasn’t been without controversies, including instances of research misconduct and not effectively monitoring grant awards and the related research.

Researchers and some states have sued NIH and HHS over the grant cuts. An April 3 deposition by NIH official Michelle Bulls said Rachel Riley, a senior adviser at HHS who is part of the Department of Government Efficiency created by executive order, provided NIH officials lists of grants to terminate and language for termination notices. Elon Musk, the world’s richest person, led DOGE through May.

Norton has worked at the NIH as a federal employee or contractor for about a decade. She said the current administration’s policies are “definitely unethical and very likely illegal,” listing a string of developments  in recent months. They include terminating studies early and putting participating patients at risk because they have had to abruptly stop taking medications, and holding up research that would predominantly or exclusively recruit participants from minority races and ethnicities, who have historically been underrepresented in medical research.

“They’re saying that doing studies exclusively on Black Americans to try to develop interventions that work for that population, or interventions that are culturally tailored to Hispanic-Latino populations — that that kind of research can’t go forward is extremely problematic,” Norton said. “And, as a matter of fact, studies that over-recruit from white people have been allowed to go forward.”

The NIH workers also demanded that Bhattacharya reinstate workers who were dismissed under recent mass firings and allow research that is done in partnership with institutions in foreign countries “to continue without disruption.” The NIH works with organizations around the globe to combat major public health issues, including types of cancer, tobacco-related illnesses, and HIV.

In addition to the firing of probationary workers, NIH fired 1,200 civil servants as part of a rapid “reduction in force” at federal health agencies. During a May 19 town hall meeting with NIH staff, a recording of which was obtained by KFF Health News, Bhattacharya said the decisions about RIFs “happened before I got here. I actually don’t have any transparency into how those decisions were made.”

He started at NIH on April 1, the day many workers at NIH and other agencies were told they were fired. Other workers have been fired since Bhattacharya took the helm — nearly all the National Cancer Institute’s communications staff were fired in early May, three former employees told KFF Health News.

The letter is the latest salvo in a growing movement by scientists and others against the Trump administration’s actions. In addition to in-person protests outside HHS headquarters and elsewhere, some former employees are organizing patients to get involved.

Peter Garrett, who led the National Cancer Institute’s communications work, has created an advocacy nonprofit called Patient Action for Cancer Research. The aim is to engage patients “in the conversation and federal funding and science policymaking,” he said in an interview.

His group aims to get patients and their relatives to speak out about how federal cancer research affects them directly, he said — a “guerrilla lobbying” effort to put the issue squarely before members of Congress. Garrett said he retired early from the cancer institute because of concerns about political interference.

Career officials routinely work under both Republican and Democratic presidents. It is par for the course for their priorities and assignments to evolve when a new president, Cabinet secretaries, and other political appointees take over. Usually, those changes occur without much protest.

This time, workers said the upheaval and harm done to the NIH is so extensive that they felt they had no choice but to protest.

In 11 years at NIH, Norton said, “I’ve never seen anything that comes anywhere near this.”

In the June 9 letter, the workers said, “Many have raised these concerns to NIH leadership, yet we remain pressured to implement harmful measures.”

“It’s not about our jobs,” said one NIH worker who signed the letter anonymously. “It is about humanity. It is about the future.”

Senior correspondent Arthur Allen contributed to this report.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).