The National Institutes of Health's sweeping cuts of grants that fund scientific research are inflicting pain almost universally across the U.S., including in most states that backed President Donald Trump in the 2024 election.
A KFF Health News analysis underscores that the terminations are sparing no part of the country, politically or geographically. About 40% of organizations whose grants the NIH cut in its first month of slashing, which started Feb. 28, are in states Trump won in November.
The Trump administration has singled out Ivy League universities including Columbia and Harvard for broad federal funding cuts. But the spending reductions at the NIH, the nation's foremost source of funding for biomedical research, go much further: Of about 220 organizations that had grants terminated, at least 94 were public universities, including flagship state schools in places such as Florida, Georgia, Ohio, Nebraska, and Texas.
The Trump administration has canceled hundreds of grants supporting research on topics such as vaccination; diversity, equity, and inclusion; and the health of LGBTQ+ populations. Some of the terminations are a result of Trump's executive orders to abandon federal work on diversity and equity issues. Others followed the Senate confirmation of anti-vaccine activist Robert F. Kennedy Jr. to lead the Department of Health and Human Services, which oversees the NIH. Many mirror the ambitions laid out in Project 2025's "Mandate for Leadership," the conservative playbook for Trump's second term.
Affected researchers say Trump administration officials are taking a cudgel to efforts to improve the lives of people who often experience worse health outcomes — ignoring a scientific reality that diseases and other conditions do not affect all Americans equally.
KFF Health News found that the NIH terminated about 780 grants or parts of grants between Feb. 28 and March 28, based on documents published by the Department of Health and Human Services and a list maintained by academic researchers. Some grants were canceled in full, while in other cases, only supplements — extra funding related to the main grant, usually for a shorter-term, related project — were terminated.
Among U.S. recipients, 96 of the institutions that lost grants in the first month are in politically conservative states including Florida, Ohio, and Indiana, where Republicans control the state government or voters reliably support the GOP in presidential campaigns, or in purple states such as North Carolina, Michigan, and Pennsylvania that were presidential battleground states. An additional 124 institutions are in blue states.
Sybil Hosek, a research professor at the University of Illinois-Chicago, helps run a network that focuses on improving care for people 13 to 24 years old who are living with or at risk for HIV. The NIH awarded Florida State University $73 million to lead the HIV project.
"We never thought they would destroy an entire network dedicated to young Americans," said Hosek, one of the principal investigators of the Adolescent Medicine Trials Network for HIV/AIDS Interventions. The termination "doesn't make sense to us."
NIH official Michelle Bulls is director of the Office of Policy for Extramural Research Administration, which oversees grants policy and compliance across NIH institutes. In terminating the grant March 21, Bulls wrote that research "based primarily on artificial and nonscientific categories, including amorphous equity objectives, are antithetical to the scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment, and ultimately do not enhance health, lengthen life, or reduce illness."
Adolescents and young adults ages 13 to 24 accounted for 1 in 5 new HIV infections in the U.S. in 2022, according to the Centers for Disease Control and Prevention.
"It's science in its highest form," said Lisa Hightow-Weidman, a professor at Florida State University who co-leads the network. "I don't think we can make America healthy again if we leave youth behind."
HHS spokesperson Emily Hilliard said in an emailed statement that "NIH is taking action to terminate research funding that is not aligned with NIH and HHS priorities." The NIH and the White House didn't respond to requests for comment.
"As we begin to Make America Healthy Again, it's important to prioritize research that directly affects the health of Americans. We will leave no stone unturned in identifying the root causes of the chronic disease epidemic as part of our mission to Make America Healthy Again," Hilliard said.
Harm to HIV, Vaccine Studies
The NIH, with its nearly $48 billion annual budget, is the largest public funder of biomedical research in the world, awarding nearly 59,000 grants in the 2023 fiscal year. The Trump administration has upended funding for projects that were already underway, stymied money for new applications, and sought to reduce how much recipients can spend on overhead expenses.
Those changes — plus the firing of 1,200 agency employees as part of mass layoffs across the government — are alarming scientists and NIH workers, who warn that they will undermine progress in combating diseases and other threats to the nation's public health. On April 2, the American Public Health Association, Ibis Reproductive Health, and affected researchers, among others, filed a lawsuit in federal court against the NIH and HHS to halt the grant cancellations.
Two National Cancer Institute employees, who were granted anonymity because they were not authorized to speak to the press and feared retaliation, said its staff receives batches of grants to terminate almost daily. On Feb. 27, the cancer institute had more than 10,800 active projects, the highest share of the NIH's roughly two dozen institutes and centers, according to the NIH's website. At least 47 grants that NCI awarded were terminated in the first month.
Kennedy has said the NIH should take a years-long pause from funding infectious disease research. In November 2023, he told an anti-vaccine group, "I'm gonna say to NIH scientists, ‘God bless you all. Thank you for public service. We're going to give infectious disease a break for about eight years,'" according to NBC News.
For years, Kennedy has peddled falsehoods about vaccines — including that "no vaccine" is "safe and effective," and that "there are other studies out there" showing a connection between vaccines and autism, a link that has repeatedly been debunked — and claimed falsely that HIV is not the only cause of AIDS.
KFF Health News found that grants in blue states were disproportionately affected, making up roughly two-thirds of terminated grants, many of them at Columbia University. The university had more grants terminated than all organizations in politically red states combined. On April 4, Democratic attorneys general in 16 states sued HHS and the NIH to block the agency from canceling funds.
Researchers whose funding was stripped said they stopped clinical trials and other work on improving care for people with HIV, reducing vaping and smoking rates among LGBTQ+ teens and young adults, and increasing vaccination rates for young children. NIH grants routinely span several years.
For example, Hosek said that when the youth HIV/AIDS network's funding was terminated, she and her colleagues were preparing to launch a clinical trial examining whether a particular antibiotic that is effective for men to prevent sexually transmitted infections would also work for women.
"This is a critically important health initiative focused on young women in the United States," she said. "Without that study, women don't have access to something that men have."
Other scientists said they were testing how to improve health outcomes among newborns in rural areas with genetic abnormalities, or researching how to improve flu vaccination rates among Black children, who are more likely to be hospitalized and die from the virus than non-Hispanic white children.
"It's important for people to know that — if, you know, they are wondering if this is just a waste of time and money. No, no. It was a beautiful and rare thing that we did," said Joshua Williams, a pediatric primary care doctor at Denver Health in Colorado who was researching whether sharing stories about harm experienced due to vaccine-preventable diseases — from missed birthdays to hospitalizations and job loss — might inspire caregivers to get their children vaccinated against the flu.
He and his colleagues had recruited 200 families, assembled a community advisory board to understand which vaccinations were top priorities, created short videos with people who had experienced vaccine-preventable illness, and texted those videos to half of the caregivers participating in the study.
They were just about to crack open the medical records and see if it had worked: Were the group who received the videos more likely to follow through on vaccinations for their children? That's when he got the notice from the NIH.
"It is the policy of NIH not to prioritize research activities that focuses gaining scientific knowledge on why individuals are hesitant to be vaccinated and/or explore ways to improve vaccine interest and commitment," the notice read.
Williams said the work was already having an impact as other institutions were using the idea to start projects related to cancer and dialysis.
A Hit to Rural Health
Congress previously tried to ensure that NIH grants also went to states that historically have had less success obtaining biomedical research funding from the government. Now those places aren't immune to the NIH's terminations.
Sophia Newcomer, an associate professor of public health at the University of Montana, said she had 18 months of work left on a study examining undervaccination among infants, which means they were late in receiving recommended childhood vaccines or didn't receive the vaccines at all. Newcomer had been analyzing 10 years of CDC data about children's vaccinations and had already found that most U.S. infants from 0 to 19 months old were not adequately vaccinated.
Her grant was terminated March 10, with the NIH letter stating the project "no longer effectuates agency priorities," a phrase replicated in other termination letters KFF Health News has reviewed.
"States like Montana don't get a lot of funding for health research, and health researchers in rural areas of the country are working on solutions to improve rural health care," Newcomer said. "And so cuts like this really have an impact on the work we're able to do."
Montana is one of 23 states, along with Puerto Rico, that are eligible for the NIH's Institutional Development Award program, meant to bolster NIH funding in states that historically have received less investment. Congress established the program in 1993.
The NIH's grant terminations hit institutions in 15 of those states, more than half that qualify, plus Puerto Rico.
Researchers Can't 'Just Do It Again Later'
The NIH's research funds are deeply entrenched in the U.S. health care system and academia. Rarely does an awarded grant stay within the four walls of a university that received it. One grant's money is divvied up among other universities, hospitals, community nonprofits, and other government agencies, researchers said.
Erin Kahle, an infectious disease epidemiologist at the University of Michigan, said she was working with Emory University in Georgia and the CDC as part of her study. She was researching the impact of intimate partner violence on HIV treatment among men living with the virus. "They are relying on our funds, too," she said.
Kahle said her top priority was to ethically and safely wind down her nationwide study, which included 418 people, half of whom were still participating when her grant was terminated in late March. Kahle said that includes providing resources to participants for whom sharing experiences of intimate partner violence may cause trauma or mental health distress.
Rachel Hess, the co-director of the Clinical & Translational Science Institute at the University of Utah, said the University of Nevada-Reno and Intermountain Health, one of the largest hospital systems in the West, had received funds from a $38 million grant that was awarded to the University of Utah and was terminated March 12.
The institute, which aims to make scientific research more efficient to speed up the availability of treatments for patients, supported over 5,000 projects last year, including 550 clinical trials with 7,000 participants. Hess said that, for example, the institute was helping design a multisite study involving people who have had heart attacks to figure out the ideal mix of medications "to keep them alive" before they get to the hospital, a challenge that's more acute in rural communities.
After pushback from the university — the institute's projects included work to reduce health care disparities between rural and urban areas — the NIH restored its grant March 29.
Among the people the Utah center thanked in its announcement about the reversal were the state's congressional delegation, which consists entirely of Republican lawmakers. "We are grateful to University of Utah leadership, the University of Utah Board of Trustees, our legislative delegation, and the Utah community for their support," it said.
Hilliard, of HHS, said that "some grants have been reinstated following the appeals process, and the agency will continue to carry out the remaining appeals as planned to determine their alignment." She declined to say how many had been reinstated, or why the University of Utah grant was among them.
Other researchers haven't had the same luck. Kahle, in Michigan, said projects like hers can take a dozen years from start to finish — applying for and receiving NIH funds, conducting the research, and completing follow-up work.
"Even if there are changes in the next administration, we're looking at at least a decade of setting back the research," Kahle said. "It's not as easy as like, 'OK, we'll just do it again later.' It doesn't really work that way."
Methodology
KFF Health News analyzed National Institutes of Health grant data to determine the states and organizations most affected by the Trump administration's cuts.
We tallied the number of terminated NIH grants using two sources: a Department of Health and Human Services list of terminated grants published April 4; and a crowdsourced list maintained by Noam Ross of rOpenSci and Scott Delaney of the Harvard T.H. Chan School of Public Health, as of April 8. We focused on the first month of terminations: from Feb. 28 to March 28. We found that 780 awards were terminated in total, with 770 of them going to recipients based in U.S. states and two to recipients in Puerto Rico.
The analysis does not account for potential grant reinstatements, which we know happened in at least one instance.
Additional information on the recipients, such as location and business type, came from the USAspending.gov Award Data Archive.
There were 222 U.S. recipients in total. At least 94 of them were public higher education institutions. Forty-one percent of organizations that had NIH grants cut in the first month were in states that President Donald Trump won in the 2024 election.
Some recipients, including the University of Texas MD Anderson Cancer Center and Vanderbilt University Medical Center, are medical facilities associated with higher education institutions. We classified these as hospitals/medical centers.
We also wanted to see whether the grant cuts affected states across the political spectrum. We generally classified states as blue if Democrats control the state government or Democratic candidates won them in the last three presidential elections, and red if they followed this pattern but for Republicans. Purple states are generally presidential battleground states or those where voters regularly split their support between the two parties: Arizona, Michigan, Nevada, New Hampshire, North Carolina, Pennsylvania, Virginia, and Wisconsin. The result was 25 red states, 17 blue states, and eight purple states. The District of Columbia was also blue.
We found that, of affected U.S. institutions, 96 were in red or purple states and 124 were in blue states.
Michele Andrews had been seeing her internist in Northampton, Massachusetts, a small city two hours west of Boston, for about 10 years. She was happy with the care, though she started to notice it was becoming harder to get an appointment.
"You'd call and you're talking about weeks to a month," Andrews said.
That's not surprising, as many workplace surveys show the supply of primary care doctors has fallen well below the demand, especially in rural areas such as western Massachusetts. But Andrews still wasn't prepared for the letter that arrived last summer from her doctor, Christine Baker, at Pioneer Valley Internal Medicine.
"We are writing to inform you of an exciting change we will be making in our Internal Medicine Practice," the letter read. "As of September 1st, 2024, we will be switching to Concierge Membership Practice."
Concierge medicine is a business model in which a doctor charges patients a monthly or annual membership fee — even as the patients continue paying insurance premiums, copays, and deductibles. In exchange for the membership fee, doctors limit their number of patients.
Many physicians who've made the change said it resolved some of the pressures they faced in primary care, such as having too many patients to see in too short a time.
Andrews was floored when she got the letter. "The second paragraph tells me the yearly fee for joining will be $1,000 per year for existing patients. It'll be $1,500 for new patients," she said.
Although numbers are not tracked in any one place, the trade magazine Concierge Medicine Today estimates there are 7,000 to 22,000 concierge physicians in the U.S. Membership fees range from $1,000 to as high as $50,000 a year.
Critics say concierge medicine helps only patients who have extra money to spend on health care, while shrinking the supply of more traditional primary care practices in a community. It can particularly affect rural communities already experiencing a shortage of primary care options.
Andrews and her husband had three months to either join and pay the fee or leave the practice. They left.
"I'm insulted and I'm offended," Andrews said. "I would never, never expect to have to pay more out of my pocket to get the kind of care that I should be getting with my insurance premiums."
Baker, Andrews' former physician, said fewer than half her patients opted to stay — shrinking her patient load from 1,700 to around 800, which she considers much more manageable. Baker said she had been feeling so stressed that she considered retiring.
"I knew some people would be very unhappy. I knew some would like it," she said. "And a lot of people who didn't sign up said, ‘I get why you're doing it.'"
Patty Healey, another patient at Baker's practice, said she didn't consider leaving.
"I knew I had to pay," Healey said. As a retired nurse, Healey knew about the shortages in primary care, and she was convinced that if she left, she'd have a very difficult time finding a new doctor. Healey was open to the idea that she might like the concierge model.
"It might be to my benefit, because maybe I'll get earlier appointments and maybe I'll be able to spend a longer period of time talking about my concerns," she said.
This is the conundrum of concierge medicine, according to Michael Dill, director of workforce studies at the Association of American Medical Colleges. The quality of care may go up for those who can and do pay the fees, Dill said. "But that means fewer people have access," he said. "So each time any physician makes that switch, it exacerbates the shortage."
A state analysis found that the percentage of residents in western Massachusetts who said they had a primary care provider was lower than in several other regions of the state.
Dill said the impact of concierge care is worse in rural areas, which often already experience physician shortages. "If even one or two make that switch, you're going to feel it," Dill said.
Rebecca Starr, an internist who specializes in geriatric care, recently started a concierge practice in Northampton.
For many years, she consulted for a medical group whose patients got only 15 minutes with a primary care doctor, "and that was hardly enough time to review medications, much less manage chronic conditions," she said.
When Starr opened her own medical practice, she wanted to offer longer appointments — but still bring in enough revenue to make the business work.
"I did feel a little torn," Starr said. While it was her dream to offer high-quality care in a small practice, she said, "I have to do it in a way that I have to charge people, in addition to what insurance is paying for."
Starr said her fee is $3,600 a year, and her patient load will be capped at 200, much lower than the 1,000 or even 2,000 patients that some doctors have. But she still hasn't hit her limit.
"Certainly there's some people that would love to join and can't join because they have limited income," Starr said.
Many doctors making the switch to concierge medicine say the membership model is the only way to have the kind of personal relationships with patients that attracted them to the profession in the first place.
"It's a way to practice self-preservation in this field that is punishing patients and doctors alike," said internal medicine physician Shayne Taylor, who recently opened a practice offering "direct primary care" in Northampton. The direct primary care model is similar to concierge care in that it involves charging a recurring fee to patients, but direct care bypasses insurance companies altogether.
Taylor's patients, capped at 300, pay her $225 a month for basic primary care visits — and they must have health insurance to cover care such as X-rays and medications, which her practice does not provide. But Taylor doesn't accept insurance for any of her services, which saves her administrative costs.
"We get a lot of pushback because people are saying, ‘Oh, this is elitist, and this is only going to be accessible to people that have money,'" Taylor said.
But she said the traditional primary care model doesn't work. "We cannot spend so much time seeing so many patients and documenting in such a way to get an extra $17 from the insurance company."
While much of the pushback on the membership model comes from patients and policy experts, some of the resistance comes from physicians.
Paul Carlan, a primary care doctor who runs Valley Medical Group in western Massachusetts, said his practice is more stretched than ever. One reason is that the group's clinics are absorbing some of the patients who have lost their doctor to concierge medicine.
"We all contribute through our tax dollars, which fund these training programs," Carlan said.
"And so, to some degree, the folks who practice health care in our country are a public good," Carlan said. "We should be worried when folks are making decisions about how to practice in ways that reduce their capacity to deliver that good back to the public."
But Taylor, who has the direct primary care practice, said it's not fair to demand that individual doctors take on the task of fixing a dysfunctional health care system.
"It's either we do something like this," Taylor said, "or we quit."
Most Medicaid recipients already have jobs and such a mandate would only kick eligible people off Medicaid, rather than improve their economic prospects.
This article was published on Tuesday, April 15, 2025 in KFF Health News.
For many years, Eric Wunderlin's health issues made it hard to find stable employment.
Struggling to manage depression and diabetes, Wunderlin worked part-time, minimum-wage retail jobs around Dayton, Ohio, making so little he said he sometimes had to choose between paying rent and buying food.
But in 2018, his CareSource Medicaid health plan offered him help getting a job. It connected him to a life coach, who helped him find full-time work with health benefits. Now, he works for a nonprofit social service agency, a job he said has given him enough financial stability to plan a European vacation next year.
"I feel like a real person and I can go do things," said Wunderlin, 42. "I feel like I pulled myself out of that slump."
Republicans in Congress and several states, including Ohio, Iowa, and Montana, are pushing to implement work requirements for nondisabled adults, arguing a mandate would encourage enrollees to find jobs. And for Republicans pushing to require Medicaid enrollees to work, Wunderlin's story could be held up as evidence that government health coverage can help people find employment and, ultimately, reduce their need for public assistance.
Yet his experience is rare. Medicaid typically does not offer such help, and when states do try to help, such efforts are limited.
And opponents point out that most Medicaid recipients already have jobs and say such a mandate would only kick eligible people off Medicaid, rather than improve their economic prospects. Nearly two-thirds of Medicaid enrollees work, with most of the rest acting as caregivers, going to school, or unable to hold a job due to disability or illness, according to KFF, a health information nonprofit that includes KFF Health News.
Existing efforts to help Medicaid recipients get a job have seen limited success because there's not a lot of "room to move the needle," said Ben Sommers, a professor of healthcare economics at the Harvard T.H. Chan School of Public Health. Most Medicaid enrollees already work — just not in jobs with health benefits, he said.
"The ongoing argument that some folks make is that there are a lot of people freeloading in Medicaid," he said. "That's just not supported by the evidence."
Using Health Programs to Encourage Work
The GOP-controlled Congress could allow or require states to implement a Medicaid work requirement as part of revamping and downsizing Medicaid. The first Trump administration encouraged those work mandates, but many were struck down by federal judges who said they were illegal under federal law.
Policy experts and state officials say more attention should be paid to investments that have helped people find better jobs — from personalized life coaching to, in some cases, health plans' directly hiring enrollees.
They argue work requirements alone are not enough. "The move to economic mobility requires a ladder, not a stick," said Farah Khan, a fellow with the Brookings Institution, a nonpartisan think tank.
While Medicaid work requirements have been debated for decades, the issue has become more heated as 40 states and Washington, D.C., have expanded Medicaid eligibility under the Affordable Care Act to the vast majority of low-income adults. More than 20 million adults have gained coverage as a result — but Republicans are now considering eliminating the billions in extra federal funding that helped states extend eligibility beyond groups including many children, pregnant women, and disabled people.
Only Georgia and Arkansas have implemented mandates that some Medicaid enrollees work, volunteer, go to school, or enroll in job training. But a study Sommers co-authored showed no evidence work requirements in Arkansas' program led to more people working, in part because most of those who could work already were.
In Arkansas, more than 18,000 people lost coverage under the state's requirement before the policy was suspended by a federal judge in 2019 after less than a year. Those who lost their Medicaid healthcare reported being unaware or confused about how to report work hours. Since 2023, Arkansas has been giving Medicaid health plans financial incentives to help enrollees train for jobs, but so far few have taken advantage.
Some plans, including Arkansas Blue Cross and Blue Shield's, offer members $25 to $65 to complete a "career readiness" certificate. In 2024, some Arkansas health plans offered enrollees educational videos about topics including taxes and cryptocurrency.
Health plans don't have an incentive to help someone find a better-paying job, because that could mean losing a customer if they then make too much to qualify for Medicaid, said Karin VanZant, a vice president at Clearlink Partners, a healthcare consulting company.
Rather than offering incentives for providing job training, some states, such as California and Ohio, require the insurance companies that run Medicaid to help enrollees find work.
In Montana, where some lawmakers are pushing to implement work requirements, a promising optional program nearly collapsed after state lawmakers required it be outsourced to private contractors.
Within the program's first three years, the state paired 32,000 Medicaid enrollees with existing federally funded job training programs. Most had higher wages a year after starting training, the state found.
But enrollment has plummeted to just 11 people, according to the latest data provided by the state's labor department.
Sarah Swanson, who heads the department, said several of the nonprofit contractors that ran the program shuttered. "There was no real part in this for us to deliver direct services to the folks that walked through our door," she said. The state hopes to revive job training by allowing the department to work alongside contractors to reach more people.
The Hunt for Results
State officials say they don't have much data to track the effectiveness of existing job programs offered by Medicaid plans.
Stephanie O'Grady, a spokesperson for the Ohio Department of Medicaid, said the state does not track outcomes because "the health plans are not employment agencies."
Officials with CareSource, which operates Medicaid plans in multiple states, say it has about 2,300 Medicaid and ACA marketplace enrollees in its JobConnect program — about 1,400 in Ohio, 500 in Georgia, and 400 in Indiana.
The program connects job seekers with a life coach who counsels them on skills such as "showing up on time, dressing the part for interviews, and selling yourself during the interview," said Jesse Reed, CareSource's director of life services in Ohio.
Since 2023, about 800 people have found jobs through the program, according to Josh Boynton, a senior vice president at CareSource. The health plan itself has hired 29 Medicaid enrollees into customer service, pharmacy, and other positions — nearly all full-time with benefits, he said.
In 2022, California started offering nontraditional health benefits through Medicaid — including help finding jobs — for enrollees experiencing homelessness or serious mental illness, or who are otherwise at risk of avoidable emergency room care. As of September, it had served nearly 280,000 enrollees, but the state doesn't have data on how many became employed.
The University of Pittsburgh Medical Center, which is among the largest private employers in Pennsylvania, running both a sprawling hospital system and a Medicaid plan, has hired over 10,000 of its Medicaid enrollees since 2021 through its training and support services. Among other jobs, they took positions as warehouse workers, customer service representatives, and medical assistants.
The vast majority left low-paying jobs for full-time positions with health benefits, said Dan LaVallee, a senior director of UPMC Health Plan's Center for Social Impact. "Our Pathways to Work program is a model for the nation," he said.
Josh Archambault, a senior fellow with the conservative Cicero Institute, said Medicaid should focus on improving the financial health of those enrolled.
While the first Trump administration approved Medicaid work requirements in 13 states, the Biden administration or federal judges blocked all except Georgia's.
"I don't think states have been given ample chance to experiment and try to figure out what works," Archambault said.
KFF Health News senior correspondent Angela Hart contributed to this report.
In January, a teenager in suburban St. Louis informed his high school counselor that a classmate said he planned to kill himself later that day.
The 14-year-old classmate denied it, but his mother, Marie, tore through his room and found a suicide note in his nightstand. (She asked KFF Health News to publish only her middle name because she does not want people to misjudge or label her son.)
His parents took him to Mercy Hospital St. Louis. According to his mother, providers told them they didn't have beds available at their behavioral health center, so the teen spent three days in a room in a secured area of the emergency department and saw a doctor twice, one time virtually.
Joe Poelker, a Mercy hospital spokesperson, declined to answer questions from KFF Health News. Leaders of Mercy and other local hospitals have described the shortage of beds for inpatient pediatric psychiatric care in the St. Louis area as a crisis for years.
Nationwide, psychiatric "boarding" — when a patient waits in the emergency room after providers decide to admit the person — has increased because of a rise in suicide attempts, among other mental health issues, and a shortage of inpatient psychiatric beds, according to a study of 40 hospitals in the journal Pediatrics. It found the number of cases in which children spent at least two days in pediatric hospitals before being transferred for psychiatric care also increased 66% from 2017 through 2023 to reach 16,962 instances.
St. Louis Children's Hospital leaders aim to address that problem by opening a 77-bed pediatric mental health hospital in the suburb of Webster Groves. But as often happens with such proposals, neighbors objected. They worry it would worsen safety and lower property values.
Over the past decade, proposed psychiatric facilities for minors in California, Colorado, Iowa, Nebraska, and New York have also faced local resistance.
Behavioral health care advocates counter that such concerns are largely unfounded and rooted in stigma. Locating such facilities in remote areas — as neighbors sometimes suggest — reinforces the misconception that people with mental illness are dangerous and makes it harder to help them without their support system nearby, doctors say.
"We wouldn't take children with cancer and say they need to be two hours away, where there is no one around them," said Cynthia Rogers, a pediatric psychiatrist at St. Louis Children's. "These are still children with illnesses, and they want to be in their home city, where their family can visit them."
In the United States, the number of suicides among minors increased 62% from 2002 to 2022, according to a KFF analysis of data from the Centers for Disease Control and Prevention.
At St. Louis Children's, the crisis has fueled more emergency room visits, Rogers said, with behavioral health visits nearly quadrupling from 2019 to 2023, jumping from 565 to 2,176. She attributes the increase to factors such as social media engagement, isolation caused by shutdowns during the covid-19 pandemic, and the political climate, which she said has been particularly hard on LGBTQ+ children.
"The pandemic seemed to throw gasoline on the fire," Rogers said.
In the middle- and upper-class suburb of Webster Groves, St. Louis Children's and KVC, a behavioral health provider, want to use a site that served as an orphanage in the 19th century to create 65 inpatient beds for children needing care for about a week and 12 residential beds for people requiring longer stays. KVC now runs a school there for students who struggle in traditional classrooms and offers services to help children in foster care.
"Introducing a hospital into this historically significant residential area disrupts its stability by undermining" its character, one resident testified at a January City Council meeting.
Tim Conway, who has lived across from the site for three decades, told KFF Health News that his opposition is primarily because the facility and its parking would take up more space than the existing structures.
The detailed security plans have not eased his concerns. "It makes me wonder why it needs to be that robust," Conway said.
Samer El Hayek, a psychiatrist at the American Center for Psychiatry and Neurology in the United Arab Emirates, has studied how stigma impacts the locations of psychiatric facilities around the world and said people often don't want the hospitals nearby because they associate them with violence or unpredictable behavior.
"The misconception of increased danger often stems from outdated stereotypes rather than factual evidence," El Hayek said.
Little evidence suggests that people with mental illness are more likely to commit a crime or be violent than the general population, with the exception of people with a severe illness such as schizophrenia, who, while it's still rare, are likelier to commit a violent act.
But residents near mental health hospitals have been rattled by encounters with patients who escaped or reports from law enforcement and localnews about missing patients.
In Oklahoma City, Richard Scroggins in 2014 opposed the expansion of Cedar Ridge Behavioral Hospital, which then treated youths and adults, because of its security issues.
Scroggins, who raises horses and cattle on his property, told The Oklahoman newspaper at the time that he once found a stranger raking leaves in his yard. After determining the person was suffering from mental illness and harmless, Scroggins said, he called the police, who retrieved the person.
The Cedar Ridge provider ultimately dropped plans to expand the facility after community opposition.
Scroggins has since encountered other patients from the facility on his property but none in recent years, he told KFF Health News in February. His perspective on the hospital has changed because its staff addressed his security concerns.
"Nobody wants it in their neighborhood, but it's a necessity," Scroggins said. "I'm a Christian, so we are supposed to reach out and help."
Carrie Blumert, CEO of the Mental Health Association Oklahoma, said psychiatric facilities make surrounding areas safer by providing medical care and "treating the root of people's issues rather than just throwing them in a jail cell."
In Marie's case, her son was ultimately admitted to Mercy-affiliate Hyland Behavioral Health Center and spent a few days there until a physician told the family he probably just needed to speak with a counselor, she said. He was discharged.
A day later, she said, the teen said he still wanted to kill himself, so his parents took him to St. Louis Children's, where he was admitted the same day. After a 15-minute visit, Marie said, a doctor pulled her aside and asked, "Have you ever thought that he might be on the autism spectrum?"
"‘Oh my gosh, you're the first person to validate my feeling,'" Marie told the doctor.
Her son stayed two weeks at the hospital, during which providers diagnosed him with autism and prescribed antidepressants. He returned to the classroom and baseball field, Marie said, but learning he has autism upset him.
"He's still trying to process that, and he's very sensitive. And they are teenagers, so when kids are mean to him at school or make fun of him, he takes that to heart way more than a typical teenager would," Marie said. "I have hope for him that he will be OK."
And soon, she knows, kids like her son could have another option in St. Louis if they need acute psychiatric help.
Despite community pushback, the Webster Groves City Council unanimously approved the rezoning needed for the hospital in January. The officials described opponents' concerns as legitimate but said the hospital would benefit children's mental health and the surrounding community.
"This is by far and away one of the easiest votes I've ever had to take," said Councilmember David Franklin, adding that the approval demonstrates that "Webster Groves cares not only about its own citizens but the citizens of this region."
Nearly 3 million Americans live sicker, shorter lives in the hundreds of rural counties where doctor shortages are the worst and poor internet connections mean little or no access to telehealth services.
This article was published on Wednesday, April 9, 2025 in KFF Health News.
EUTAW, Ala. — Leroy Walker arrived at the county hospital short of breath. Walker, 65 and with chronic high blood pressure, was brought in by one of rural Greene County's two working ambulances.
Nurses checked his heart activity with a portable electrocardiogram machine, took X-rays, and tucked him into Room 122 with an IV pump pushing magnesium into his arm.
"I feel better," Walker said. Then: Beep. Beep. Beep.
The Greene County Health System, with only three doctors, has no intensive care unit or surgical services. The 20-bed hospital averages a few patients each night, many of them, like Walker, with chronic illnesses.
Greene County residents are some of the sickest in the nation, ranking near the top for rates of stroke, obesity, and high blood pressure, according to data from the federal Centers for Disease Control and Prevention.
Patients entering the hospital waiting area encounter floor tiles that are chipped and stained from years of use. A circular reception desk is abandoned, littered with flyers and advertisements.
But a less visible, more critical inequity is working against high-quality care for Walker and other patients: The hospital's internet connection is a fraction of what experts say is sufficient. High-speed broadband is the new backbone of America's health care system, which depends on electronic health records, high-tech wireless equipment, and telehealth access.
Greene is one of more than 200 counties with some of the nation's worst access to not only reliable internet, but also primary care providers and behavioral health specialists, according to a KFF Health News analysis. Despite repeated federal promises to support telehealth, these places remain disconnected.
During his first term, President Donald Trump signed an executive order promising to improve "the financial economics of rural healthcare" and touted "access to high-quality care" through telehealth. In 2021, President Joe Biden committed billions to broadband expansion.
KFF Health News found that counties without fast, reliable internet and with shortages of health care providers are mostly rural. Nearly 60% of them have no hospital, and hospitals closed in nine of the counties in the past two decades, according to data collected by the Cecil G. Sheps Center for Health Services Research at the University of North Carolina-Chapel Hill.
Residents in these "dead zone" counties tend to live sicker and die younger than people in the rest of the United States, according to KFF Health News' analysis. They are places where systemic poverty and historical underinvestment are commonplace, including the remote West, Appalachia, and the rural South.
"It will always be rural areas with low population density and high poverty that are going to get attended to last," said Stephen Katsinas, director of the Education Policy Center at the University of Alabama. "It's vital that the money we do spend be well deployed with a thoughtful plan."
Now, after years of federal and state planning, Biden's $42 billion Broadband Equity Access and Deployment, or BEAD, program, which was approved with bipartisan support in 2021, is being held up, just as states — such as Delaware — were prepared to begin construction. Trump's new Department of Commerce secretary, Howard Lutnick, has demanded "a rigorous review" of the program and called for the elimination of regulations.
Trump's nominee to lead the federal agency overseeing the broadband program, Arielle Roth, repeatedly said during her nomination hearing in late March that she would work to get all Americans broadband "expeditiously." But when pressed by senators, Roth declined to provide a timeline for the broadband program or confirm that states would receive promised money.
Instead, Roth said, "I look forward to reviewing those allocations and ensuring the program is compliant with the law."
Sen. Maria Cantwell (D-Wash.), the Senate commerce committee's ranking minority member, said she wished Roth had been more committed to delivering money the program promised.
The political wrangling in Washington is unfolding hundreds of miles from Greene County, where only about half of homes have high-speed internet and 36% of the population lives below the poverty line, according to the U.S. Census Bureau.
Walker has lived his life in Alabama's Black Belt and once worked as a truck driver. He said his high blood pressure emerged when he was younger, but he didn't take the medicine doctors prescribed. About 11 years ago, his kidneys failed. He now needs dialysis three times a week, he said.
While lying in the hospital bed, Walker talked about his dialysis session the day before, on his birthday. As he talked, the white sheet covering his arm slipped and revealed where the skin around his dialysis port had swollen to the size of a small grapefruit.
Room 122, where Walker rested, is sparse with a single hospital bed, a chair, and a TV mounted on the wall. He was connected to the IV pump, but no other tubes or wires were attached to him. The IV machine's beeping echoed through the hallway outside. Staffers say they must listen for the high-pitched chirps because the internet connection at the hospital is too slow to support a modern monitoring system that would display alerts on computers at the nurses' station.
Aaron Brooks, the hospital's technology consultant, said financial challenges keep Greene County from buying monitoring equipment. The hospital reported a $2 million loss on patient care in its most recent federal filing. Even if Greene could afford a system, it does not have the thousands of dollars to install a high-speed fiber-optic internet connection necessary to operate it, he said.
Lacking central monitoring, registered nurse Teresa Kendrick carries a portable pulse oximeter device, she said — like ones sold at drugstores that surged in popularity during the covid-19 pandemic.
Doing her job means a "continuous spot-check," Kendrick said. Another longtime nurse described her job as "a lot of watching and checking."
Beep. Beep.
The beeping in Room 122 persisted for more than two minutes as Walker talked. He wasn't in pain — he was just worried about the beeping.
About 50 paces down the hall — past the pharmacy, an office, and another patient room — registered nurse Jittaun Williams sat at her station behind plexiglass. She was nearly 20 minutes past the end of her 12-hour shift and handing off to the three night-shift nurses.
They discussed plans for patients' care, reviewing electronic records and flipping through paper charts. The nurses said the hospital's internal and external computer systems are slow. They handwrite notes on paper charts in a patient's room and duplicate records electronically. "Our system isn't strong enough. There are many days you kind of sit here and wait," Williams said.
Broadband dead zones like Greene County persist despite decades of efforts by federal lawmakers that have created a patchwork of more than 133 funding programs across 15 agencies, according to a 2023 federal report.
Alabama's leaders, like others around the U.S., are actively spending federal funds from the Biden-era American Rescue Plan Act, according to public records. And Greene County Hospital is on the list of places waiting for ARPA construction, according to agreements provided by the Alabama Department of Economic and Community Affairs.
"It is taking too long, but I am patient," said Alabama state Sen. Bobby Singleton, a Democrat who represents the district that includes Greene County Hospital and two others he said lack fast-enough connectivity. Speed bumps such as a need to meet federal requirements and a "big fight" to get internet service providers to come into his rural district slowed the release of funds, Singleton said.
Alabama received its first portion of ARPA funds in June 2021, which Singleton said included money for building fiber-optic cables to anchor institutions like the hospital. Alabama's awards require the projects to be completed by February 2026 — nearly five years after money initially flowed to the state.
Singleton said he now sees fiber lines being built in his district every day and knows the hospital is "on the map" to be connected. "This doesn't just happen overnight," he said.
Alabama Fiber Network, a consortium of electric cooperatives, won a total of $45.7 million in ARPA funding specifically for construction to anchor institutions in Greene and surrounding counties. James Hoffman, vice president of external affairs for AFN, said the company is ahead of schedule. It plans to offer the hospital a monthly service plan that uses fiber-optic lines by year's end, he said.
Greene County Health System chief executive Marcia Pugh confirmed that she had talked with multiple companies but said she wasn't sure the work would be complete in the time frame the companies predicted.
"You know, you want to believe," Pugh said.
Beep. Beep.
Nurse Williams had finished the night-shift handoff when she heard beeps from Walker's room.
She rushed toward the sound, accidentally ducking into Room 121 before realizing her mistake.
Once in Walker's room, Williams pressed buttons on the IV pump. The magnesium flowing in the tube had stopped.
"You had a little bit more left in the bag, so I just turned it back on," Williams told Walker. She smiled gently and asked if he was warm enough. Then she hand-checked his heart rate and adjusted his sheets. At the bottom of the bed, Walker's feet hung off the mattress and Williams gently moved them and made sure they were covered.
Walker beamed. At this hospital, he said, "they care."
As rural hospitals like Greene's wait for fast-enough internet, nurses like Williams are "heroes every single day," said Aaron Miri, an executive vice president and the chief digital and information officer for Baptist Health in Jacksonville, Florida.
Miri, who served under both Democratic and Republican administrations on Department of Health and Human Services technology advisory committees, said hospitals need at least a gigabit of speed — which is 1,000 megabits per second — to support electronic health records, video consultations, the transfer of scans and images, and continuous remote monitoring of patients' heartbeats and other vital signs.
But Greene's is less than 10% of that level, recorded on the nurses' station computer as nearly 90 megabits per second for upload and download speeds.
It's a "heartbreaking" situation, Miri said, "but that's the reality of rural America."
The Beeping Stopped
Michael Gordon, one of the hospital's three doctors, arrived the next morning for his 24-hour shift. He paused in Room 122. Walker had been released overnight.
Not being able to monitor a cardiovascular patient's heart rhythm, well, "that's a problem," Gordon said. "You want to know, 'Did something really change or is that just a crazy IV machine just beeping loud and proud and nobody can hear it?'"
Despite the lack of modern technology tools, staffers do what they can to take care of patients, Pugh said. "We show the community that we care," she said.
Pugh, who started her career as a registered nurse, arrived at the hospital in 2017. It was "a mess," she said. The hospital was dinged four years in a row, starting in 2016, with reduced Medicare payments for readmitting patients. Pugh said that at times the hospital had not made payroll. Staff morale was low.
In 2021, federal inspectors notified Pugh of an "immediate jeopardy" violation — grounds for regulators to shut off federal payments — because of an Emergency Medical Treatment and Labor Act complaint. Among seven deficiencies inspectors cited, the hospital failed to provide a medical screening exam or stabilizing treatment and did not arrange appropriate transfer for a 23-year-old woman who arrived at the hospital in labor, according to federal reports.
Inspectors also said the hospital failed to ensure a doctor was on duty and failed to create and maintain medical records. An ambulance took the woman to another hospital, where the baby was "pronounced dead upon arrival," according to the report.
Federal inspectors required the hospital to take corrective actions and a follow-up inspection in July 2021 found the hospital to be in compliance.
Inspectors that year found that medical records for four discharged patients had been lost. The "physical record" included consent forms, physician orders, and treatment plans and was found in another department, where it had been left for two months.
Pugh declined to comment on the immediate jeopardy case. She confirmed that a lack of internet connectivity and use of paper charts played a role in federal findings, though she emphasized the charts were discharge papers rather than for patients being treated.
She said she understands why federal regulators require electronic health records but "our hospitals just aren't the same." Larger facilities that can "get the latest and greatest" compared with "our facilities that just don't have the manpower or the financials to purchase it," she said, "it's two different things."
Walker, like many rural Americans, relies on Medicaid, a joint state and federal insurance program for people with low incomes and disabilities. Rural hospitals in states such as Alabama that have not expanded Medicaid coverage to a wider pool of residents fare worse financially, research shows.
During Walker's stay, because the hospital can't afford to modernize its systems, nurses dealt with what Pugh later called an "astronomical" number of paper forms.
Later, at Home
Walker sat on the couch in the modest brick home he shares with his sister and nephew. In a pinch, Greene County Hospital, he said, is good "for us around here. You see what I'm saying?"
Still, Walker said, he often bypasses the county hospital and drives up the road to Tuscaloosa or Birmingham, where they have kidney specialists.
"We need better," Walker said, speaking for the 7,600 county residents. He wondered aloud what might happen if he didn't make it to the city for specialty care.
Sometimes, Walker said, he feels "thrown away."
"People done forgotten about me, it feels like," he said. "They don't want to fool with no mess like me."
Maybe Greene County's health care and internet will get better, Walker said, adding, "I hope so, for our sake out in a rural area."
Rural hospital leaders are questioning whether they can continue to afford to do business with Medicare Advantage companies, and some say the only way to maintain services and protect patients is to end their contracts with the private insurers.
Medicare Advantage plans pay hospitals lower rates than traditional Medicare, said Jason Merkley, CEO of Brookings Health System in South Dakota. Merkley worried the losses would spark staff layoffs and cuts to patient services. So last year, Brookings Health dropped all four contracts it had with major Medicare Advantage companies.
"I've had lots of discussions with CEOs and executive teams across the country in regard to that," said Merkley, whose health system operates a hospital and clinics in the small city of Brookings and surrounding rural areas.
Merkley and other rural hospital operators in recent years have enumerated a long list of concerns about the publicly funded, privately run health plans. In addition to the reimbursement issue, their complaints include payment delays and a resistance to authorizing patient care.
But rural hospitals abandoning their Medicare Advantage contracts can leave local patients without nearby in-network providers or force them to scramble to switch coverage.
Medicare is the main federal health insurance program for people 65 or older. Participants can enroll in traditional, government-run Medicare or in a Medicare Advantage plan run by a private insurance company.
In 2024, 56% of urban Medicare recipients were enrolled in a private plan, according to a report by the Medicare Payment Advisory Commission, a federal agency that advises Congress. While just 47% of rural recipients enrolled in a private plan, Medicare Advantage has expanded more quickly in rural areas.
In recent years, average Medicare Advantage reimbursements to rural hospitals were about 90% of what traditional Medicare paid, according to a new report from the American Hospital Association. And traditional Medicare already pays hospitals much less than private plans, according to a recent study by Rand Corp., a research nonprofit.
Carrie Cochran-McClain, chief policy officer at the National Rural Health Association, said Medicare Advantage is particularly challenging for small rural facilities designated critical access hospitals. Traditional Medicare pays such hospitals extra, but the private insurance companies aren't required to do so.
"The vast majority of our rural hospitals are not in a position where they can take further cuts to payment," Cochran-McClain said. "There are so many that are just really in a precarious financial spot."
Mehmet Oz — doctor, former talk show host, and newly confirmed head of the Centers for Medicare & Medicaid Services — has promoted and worked for the private Medicare industry and called for "Medicare Advantage for all." But during his recent confirmation hearing, he called for more oversight as he acknowledged bipartisan concerns about the plans' cost to taxpayers and their effect on patients.
Cochran-McClain said some Republican lawmakers want to address these issues while supporting Medicare Advantage.
"But I don't think we've seen enough yet to really know what direction that's all going to take," she said.
Medicare Advantage plans can offer lower premiums and out-of-pocket costs for some participants. Nearly all offer extra benefits, such as vision, hearing, and dental coverage. Many also offer perks, such as gym memberships, nutrition services, and allowances for over-the-counter health supplies.
But a recent study in the Health Services Research journal found that rural patients on private plans struggled to access and afford care more often than rural enrollees on traditional Medicare and urban participants in both kinds of plans.
Susan Reilly, a spokesperson for the Better Medicare Alliance, said a recent report published by her group, which promotes Medicare Advantage, found that private plans are more affordable than traditional Medicare for rural beneficiaries. That analysis was conducted by an outside firm and based on a government survey of Medicare recipients.
Reilly also pointed to a study in The American Journal of Managed Care that found the growth of private plans in rural areas from 2008-2019 was associated with increased financial stability for hospitals and a reduced risk of closure.
Merkley said that's not what he's seeing on the ground in rural South Dakota.
He said traditional Medicare reimbursed Brookings Health System 91 cents for every dollar it spent on care in 2023, while Medicare Advantage plans paid 76 cents per dollar spent. He said his staff tried negotiating better contracts with the big Medicare Advantage companies, to no avail.
Patients who remain on private plans that no longer contract with their local hospitals and clinics may face higher prices unless they travel to in-network facilities, which in rural areas can be hours away. Merkley said most patients at Brookings Health switched to traditional Medicare or to regional Medicare Advantage plans that work better with the hospital system.
That's because in most states, Medigap plans — supplemental plans that help people on traditional Medicare cover out-of-pocket costs — can deny coverage or base their prices on patients' medical history if they switch from a private plan.
Some rural health systems say they no longer work with any Medicare Advantage companies. They include Great Plains Health, which serves parts of rural Nebraska, Kansas, and Colorado, and Kimball Health Services, which is based in two small towns in Nebraska and Wyoming.
Medicare Advantage plans often limit the providers patients can see and require referrals and prior authorization for certain services. Requesting referrals, seeking preauthorization, and appealing denials can delay treatment for patients while adding extra work for doctors and billing staff.
"The unique rural lens on that is that rural providers really tend to be pretty bare-bone shops," Cochran-McClain said. "That kind of administrative burden pulls people away from really being able to focus on providing quality care to their beneficiaries."
Jonathon Green, CEO of Taylor Health Care Group in rural Georgia, said his system had to set up a team to deal solely with coverage denials, mostly from Medicare Advantage companies. He said some plans frequently decline to authorize payments before treatments, refuse to cover services they already approved, and deny payment for care that shouldn't need approval.
In these cases, Green said, the companies argue that the care wasn't appropriate for the patient.
"We hear that term constantly — ‘It's not medically necessary,'" he said. "That's the catchall for everything."
Green said Taylor Health Care Group has considered dropping its Medicare Advantage contracts but is keeping them for now.
Cochran-McClain said her group supports policy changes, such as a federal bill that aims to streamline prior authorization while requiring Medicare Advantage companies to share data about the process. The 2024 bill was co-sponsored by more than half of U.S. senators, but needs to be reintroduced this year.
Cochran-McClain said rural-health advocates also want the government to require private plans to pay critical access hospitals and similar rural facilities as much as they would receive from traditional Medicare.
Green and Merkley stressed that they aren't against the concept of private Medicare plans; they just want them to be fairer to rural facilities and patients.
Green said rural and independent hospitals don't have the leverage that urban hospitals and large chains do in negotiations with giant Medicare Advantage companies.
"We just don't have the ability to swing the pendulum enough," he said.
Underscoring the massive scale of America's medical debt problem, a New York-based nonprofit has struck a deal to pay off old medical bills for an estimated 20 million people.
Undue Medical Debt, which buys patient debt, is retiring $30 billion worth of unpaid bills in a single transaction with Pendrick Capital Partners, a Virginia-based debt trading company. The average patient debt being retired is $1,100, according to the nonprofit, with some reaching the hundreds of thousands of dollars.
The deal will prevent the debt being sold and protect millions of people from being targeted by collectors. But even proponents of retiring patient debt acknowledge that these deals cannot solve a crisis that now touches around 100 million people in the U.S.
"We don't think that the way we finance health care is sustainable," Undue Medical Debt chief executive Allison Sesso said in an interview with KFF Health News. "Medical debt has unreasonable expectations," she said. "The people who owe the debts can't pay."
In the past year alone, Americans borrowed an estimated $74 billion to pay for health care, a nationwide West Health-Gallup survey found. And even those who benefit from Undue's debt relief may have other medical debt that won't be relieved.
This large purchase also highlights the challenges that debt collectors, hospitals, and other health care providers face as patients rack up big bills that aren't covered by their health insurance.
Pendrick's chief executive, Chris Eastman, declined several requests to be interviewed about the debt sale, which has not been previously reported. But Eastman acknowledged in a 2024 podcast episode that collecting medical debts has grown more challenging as regulators have restricted how collectors can pursue patients.
Pendrick has now shuttered, which Sesso said provided strong motivation for this deal. "This was a really great opportunity to get a debt buyer out of the market," she said.
Undue Medical Debt pioneered its debt relief strategy a decade ago, leveraging charitable donations to buy medical debt from debt trading companies at steeply discounted prices and then freeing patients from the obligation to pay.
The nonprofit now buys debts directly from hospitals, as well. And it is working with about two dozen state and local governments to leverage public money to relieve medical debt in communities from Los Angeles County to Cleveland to the state of Connecticut.
The approach has been controversial. And Undue Medical Debt's record-setting purchase — financed by a mix of philanthropy and taxpayer dollars — is likely to stoke more debate over the value of paying collectors for medical debts.
"The approach is just treating the symptoms and not the disease," said Elisabeth Benjamin, a vice president at the Community Service Society of New York, a nonprofit that has led efforts to restrict aggressive hospital collections. Benjamin and other advocates say systemic changes such as ensuring hospitals offer sufficient financial aid to patients and reining in high medical prices would be more valuable in preventing people from sinking into debt.
But many government officials see retiring people's unpaid medical bills as part of a larger strategy to make it easier for patients to avoid debt in the first place.
"Turning off the tap is what's really important in the long run," said Naman Shah, a physician who directs medical affairs at the Los Angeles County Department of Public Health. The county is working to improve local hospital financial aid programs for patients. But Shah said debt relief is key, as well.
"It's easy to criticize band-aids when you're not the one who's cut," he said. "As a physician, I take care of people who have cuts, and I know the importance of stitching them back up."
Undue Medical Debt's latest deal, which it is spending $36 million to close, will help patients nationwide, according to the nonprofit. But about half the estimated 20 million people whose debts Pendrick owned live in just two states: Texas or Florida.
Neither has expanded Medicaid coverage through the 2010 Affordable Care Act, a key tool that researchers have found bolsters patients' financial security by protecting them from big medical bills and debt.
The patients eligible for debt relief have incomes at or below four times the federal poverty level, about $63,000 for a single person, or debts that exceed 5% of their incomes.
About half the debts are also more than seven years old. These have been donated to Undue Medical Debt by Pendrick, the group reported.
The nonprofit plans to pay for the rest of the debts over the next year and a half, though all collections have stopped against patients. It also plans to spend an additional $40 million — or $2 a person — to process the debts, find patients, and inform them that their debts have been relieved.
Sesso, Undue's chief executive, said she hopes the debt purchase will keep policymakers focused on enacting longer-term solutions to the nation's medical debt crisis.
She applauded state leaders for taking steps to bar medical debts from their residents' credit scores. But she said action is also needed in Washington, D.C. However, the Trump administration has suspended regulations enacted under former President Joe Biden that would have barred credit reporting of medical debt nationally, and congressional Republicans are now moving to revoke the new rules.
"There is a limit to what state and local governments can do to solve this problem," Sesso said. "It's really a national problem that has to be solved at the national level."
Sue Sheridan's baby boy, Cal, suffered brain damage from undetected jaundice in 1995. Helen Haskell's 15-year-old son, Lewis, died after surgery in 2000 because weekend hospital staffers didn't realize he was in shock. The episodes turned both women into advocates for patients and spurred research that made American health care safer.
On April 1, the Trump administration slashed the organization that supported that research — the Agency for Healthcare Research and Quality, or AHRQ — and fired roughly half of its remaining employees as part of a perplexing reorganization of the federal Health and Human Services Department.
Haskell, of Columbia, South Carolina, has done research and helped write AHRQ-published surveys and guidebooks on patient engagement for hospitals. The dissolution of AHRQ is dislodging scores of experienced patient-safety experts, a brain drain that will be impossible to rectify, she said.
Survey data gathered by AHRQ provides much of what is known about hospitalizations for motor accidents, measles, methamphetamine, and thousands of other medical issues.
"Nobody does these things except AHRQ," she said. "They're all we've got. And now the barn door's closed."
HHS Secretary Robert F. Kennedy Jr. posted on the social platform X on April 1 that layoffs at HHS, aimed at reducing the department's workforce by about 20,000 employees, were the result of alleged inefficacy. "What we've been doing isn't working," he said. "Despite spending $1.9 trillion in annual costs, Americans are getting sicker every year."
But neither Kennedy nor President Donald Trump have explained why individual agencies such as AHRQ were targeted for cuts or indicated whether any of their work would continue.
At their first meeting with the leadership of AHRQ last month, officials from Trump's Department of Government Efficiency said that they didn't know what the agency did — and that its budget would be cut by 80% to 90%, according to two people with knowledge of the meeting who were granted anonymity because of fears of retribution.
On March 28, the administration said AHRQ would merge with HHS' Office of the Assistant Secretary for Planning and Evaluation.
An AHRQ spokesperson, Rachel Seeger, said its acting chief, Mamatha Pancholi, was unavailable to answer questions.
Created on the foundation of an earlier agency in 1999, AHRQ has had two major functions: collecting survey data on U.S. health care expenditures, experiences, and outcomes; and funding research aimed at improving the safety and delivery of health care. It also has published tools and guidelines to enhance patient safety.
Its latest budget of $513 million amounts to about 0.04% of HHS spending.
"If you're going to spend $5 trillion a year on health care, it would be nice to know what the best use of that money is," said a senior AHRQ official who spoke on condition of anonymity for fear of losing his job. "To gut a 300-member, $500 million agency for no other reason than to placate a need to see blood seems really shortsighted."
Newly sworn-in FDA Commissioner Marty Makary, a surgeon who has advocated for patient safety, wrote or co-authored at least 10 research papers supported by AHRQ funding since 1998. AHRQ research and guidelines played a key role in lowering the incidence of hospital-acquired infections — such as deadly blood infections caused by contaminated IV lines, which fell 28% from 2015 to 2023, according to the Centers for Disease Control and Prevention.
Medical residents training in the 1980s were taught that such infections were an inevitable, often fatal byproduct of heart surgery, but AHRQ-funded research "showed that fairly simple checklists about preventing infections would be effective at going to zero," said Richard Kronick, a University of California-San Diego researcher who led AHRQ from 2013 to 2016.
Medical errors caused by missed diagnoses, drug errors, hospital infections, and other factors kill and maim tens of thousands of Americans each year. Makary published a controversial study in 2016 hypothesizing that errors killed 250,000 people a year in the U.S. — making medical mistakes the nation's third-leading cause of death.
"There are all kinds of terrible things about our health care system's outcomes and how we pay for it, the most expensive care in the world," Kronick said. "Without AHRQ, we'd be doing even worse."
AHRQ-funded researchers such as Hardeep Singh at Baylor College of Medicine have chipped away at patient safety risks for more than two decades. Singh devises ways to integrate technologies like telemedicine and artificial intelligence into electronic health records to alert doctors to potential prescribing errors or misdiagnoses.
Singh has 15 scholars and support staff members supported by three AHRQ grants worth about $1.5 million, he said. The elimination of the agency's office that funds outside researchers, among the cuts announced this week, is potentially "career-ending," he said. "We need safety research to protect our patients from harms in health care. No organization in the world does more for that than AHRQ."
Republicans have long been skeptical of AHRQ and the agency that preceded it. Some doctors saw it as meddling in their medical practices, while some GOP Congress members viewed it as duplicating the mission of the National Institutes of Health.
But when the Trump administration proposed merging it with NIH in 2018, a House-ordered study into health research priorities validated AHRQ's valuable role.
Now, the naysayers have triumphed.
Gordon Schiff, a Harvard Medical School internist who has received AHRQ funding since 2001, was among the first to learn about policy changes there when in February he got an email from the editors of an AHRQ patient-safety website informing him "regretfully" that a 2022 case study on suicide prevention he co-authored had been removed "due to a perception that it violates the White House policy on websites ‘that inculcate or promote gender ideology.'"
The article was not about gender issues. It briefly mentioned that LGBTQ men were at a higher risk for suicide than the general population. Schiff was offered the option of removing the LGBTQ reference but refused. He and Harvard colleague Celeste Royce have sued AHRQ, HHS, and the Office of Personnel Management over removal of the article.
"All we were doing was presenting evidence-based risk factors from the literature," he said. "To censor them would be a violation of scientific integrity and undermine the trustworthiness of these websites."
PSNet, the AHRQ publication where Schiff and Royce's article appeared, has been dissolved, although its website was still up as of April 2. Roughly half of AHRQ's 300 staffers resigned following the initial DOGE warning; 111 staff members were fired April 1, according to an email that a top executive, Jeffrey Toven, sent to employees and was shown to KFF Health News. AHRQ's remaining leadership was in the dark about Kennedy's plans, he said.
HHS spokespeople did not respond to requests for comment. Stephen Parente, a University of Minnesota finance professor who said he consults informally with Trump health officials, said much of AHRQ's work could be done by others. Its most vital services have been surveys that Westat, a private research company, performs for AHRQ on contract, said Parente, who was chief economist for health policy in the first Trump administration.
At the height of the covid pandemic, he said, data produced by AHRQ and other government sources were outclassed by private sources. To track covid, he relied on daily feeds of private insurance data from around the country.
Still, Parente said, the virtual disappearance of AHRQ means "we're going to lose a culture of research that is measured, thoughtful, and provides a channel for young investigators to make their marks."
A climate of deep depression has settled over the agency's Rockville, Maryland, headquarters, the unnamed AHRQ official said: "Almost everyone loves their job here. We're almost all PhDs in my center — a very collegial, talented group."
The official said he was "generally skeptical" that AHRQ's merger with the assistant secretary's office would keep its mission alive. The Centers for Medicare & Medicaid Services and the CDC conduct some health system quality research, but they are also losing staff, Harvard's Schiff noted.
One of Schiff's current AHRQ projects involved interviewing late-stage cancer patients to determine whether they could have been diagnosed earlier.
"The general public, I think, would like cancer to be diagnosed earlier, not when it's stage 4 or stage 3," he said. "There are things we could learn to improve our care and get more timely diagnosis of cancer."
"Medical errors and patient safety risks aren't going to go away on their own," he said.
With input from Sheridan and other mothers of children who suffered from jaundice-related brain damage, AHRQ launched research that led to a change in the standard of care whereby all newborns in the U.S. are tested for jaundice before discharge from hospitals. Cases of jaundice-related brain damage declined from 7 per 100,000 to about 2 per 100,000 newborns from 1997 to 2012.
The misfortune of Lewis, Haskell's son, led to a change in South Carolina law and later to a national requirement for hospitals to enable patients to demand emergency responses under certain circumstances.
Singh, a leading researcher on AI in health care, sees bitter irony in the way the Elon Musk-led DOGE has taken an ax to AHRQ, which recently put out a new request for proposals to study the technology. "Some think AI will fix health care without a human in the loop," Singh said. "I doubt we get there by dismantling people who support or perform patient safety research. You need a human in the loop."
Five years ago, the CEO of one of the largest pain clinic companies in the Southeast was sentenced to more than three years in prison after being convicted in a $4 million illegal kickback scheme.
But after just four months behind bars, John Estin Davis walked free. President Donald Trump commuted Davis' sentence in the last days of his first term. In a statement explaining the decision, the White House said that "no one suffered financially" from Davis' crime.
In court, however, the Trump administration was saying something very different. As the president let him go, the Department of Justice alleged in a civil lawsuit that Davis and his company defrauded taxpayers out of tens of millions of dollars with excessive urine drug testing. The DOJ alleged that Comprehensive Pain Specialists made such a "staggering" sum from cups of pee that employees had given the testing a profit-minded nickname: "liquid gold."
Davis and the company denied all allegations in court filings and settled the DOJ's fraud lawsuit without any determination of liability. Davis declined to comment for this article.
Since returning to the White House, Trump has said he will target fraud in Medicare, Medicaid, and Social Security, and his Republican allies in Congress have made combating fraud a key argument in their plans to slash spending on Medicaid, which provides health care for millions of low-income and disabled Americans. During an address to Congress last month, Trump said his administration had found "hundreds of billions of dollars of fraud" without citing any specific examples of fraud.
"Taken back a lot of that money," Trump said. "We got it just in time."
But Trump's history of showing leniency to convicted fraudsters contrasts with his present-day crackdown. In his first and second terms, Trump has granted pardons or commutations to at least 68 people convicted of fraud crimes or of interfering with fraud investigations, according to a KFF Health News review of court and clemency records, DOJ press releases, and news reports. At least 13 of those fraudsters were convicted in cases involving more than $1.6 billion of fraudulent claims filed with Medicare and Medicaid, according to the Department of Justice.
And as one of the first actions of his second term, Trump fired 17 independent inspectors general responsible for rooting out fraud and waste in government.
"It sends a really bad message and really hurts DOJ efforts at creating deterrence," said Jacob Elberg, a former assistant U.S. attorney and law professor at Seton Hall University in New Jersey. "In order to reduce health care fraud, you need people both to be afraid of getting in trouble, but also for people to believe in the legitimacy of the system."
Elberg said considerable fraud in Medicare and Medicaid exists largely because the programs' "pay-and-chase models" prioritize paying for patient care first and tracking down stolen dollars second. To prevent more fraud, the programs would likely need to be redesigned in ways that would be slower and more cumbersome for all patients, Elberg said.
Regardless, Elberg said the president's claimed focus on fraud appears to be a pretext for slashing spending that has been legally appropriated by Congress. Trump has empowered the Elon Musk-led Department of Government Efficiency, which he established and named by executive order, to make deep cuts in federal budgets, halting some medical research and aid programs in addition to cutting spending on climate change, transgender health, and diversity, equity, and inclusion programs.
"What's been the focal point to date of the administration is not what anybody has ever referred to as health care fraud," Elberg said. "There is a real blurring — a seemingly intentional blurring — between what is actually fraud and what is just spending that they are not in favor of."
Jerry Martin, who served as a U.S. attorney for the Middle District of Tennessee under President Barack Obama and now represents health care fraud whistleblowers, also said Trump's focus on fraud appeared to be "just a platform to attack things that they don't agree with" rather than "a genuine desire to root out and combat fraud."
Even so, Martin said some of his whistleblower clients have been emboldened.
"I've had clients repeat back to me 'President Trump says fraud is a priority,'" Martin said. "People are listening to it. But I don't know that what he's saying translates into what they believe."
The White House did not respond to requests for comment for this article.
A Billion-Dollar Fraud Case and Needless Eye Injections
Presidents enjoy the unique authority to erase federal convictions and prison sentences with pardons and commutations. In theory, the power is intended to be a final bulwark against injustice or overly harsh punishment. But many presidents have been accused of using the pardon power to reward powerful allies and close associates as they leave the White House.
Trump issued about 190 pardons and commutations in the final two months of his first term, including for some health care fraudsters convicted of schemes with astonishing costs.
For example, Trump granted a commutation to Philip Esformes, a Florida health care executive convicted in 2019 of a $1.3 billion Medicare and Medicaid fraud scheme. After he was sentenced, DOJ announced in a press release that "the man behind one of the biggest health care frauds in history will be spending 20 years in prison." Trump freed him 14 months later.
Trump also granted a commutation to Salomon Melgen, a Florida eye doctor who was serving a 17-year prison sentence for defrauding Medicare of $42 million. Melgen falsely diagnosed patients with eye diseases, then gave them unnecessary care, including laser treatments and painful eye injections, according to DOJ and court documents.
"Salomon Melgen callously took advantage of patients who came to him fearing blindness," said a DOJ news release after Melgen was sentenced in 2018. "They received medically unreasonable and unnecessary tests and procedures that victimized his patients and the American taxpayer."
DOJ: $70M Spent on 'Excessive' Urine Testing
Despite the flurry of pardons and commutations at the end of Trump's first term, the leniency he showed Davis was unique. Davis was the only convicted health care fraudster to receive clemency while the Trump administration was simultaneously accusing him of more fraud.
As CEO of Comprehensive Pain Specialists from 2011 to 2017, Davis oversaw a rapid expansion to more than 60 locations across 12 states, according to federal court documents.
He was indicted in 2018 for using his CEO position to refer Medicare patients in need of medical equipment to a conspirator in return for kickbacks paid through a shell company, according to court documents. He was convicted at trial in April 2019 of defrauding Medicare.
Three months later, the DOJ filed a fraud lawsuit against Davis and CPS that piggybacked on the claims of seven whistleblowers. The lawsuit alleged that CPS collected more than $70 million from federal insurance programs for urine drug testing, most of which was "excessive," and that an audit of a sampling of the tests had found at least 93% "lacked medical necessity."
Typically, government insurance programs pay for urine testing so pain clinics can verify that patients are taking their prescriptions properly and not abusing any other drugs, which could contribute to an overdose. Patients could be tested as little as once a year or as often as monthly depending on their level of risk, according to the DOJ lawsuit.
But Comprehensive Pain Specialists performed "myriad urine drug testing on virtually every CPS patient on virtually every visit" then conducted "at least 16 different types of tests" on each sample, and sometimes as many as 51, according to the lawsuit.
Trump commuted Davis' sentence for his criminal conviction in January 2021 as the DOJ was finalizing a settlement in the civil lawsuit. The commutation was supported by country music star Luke Bryan, according to a White House statement.
Months later, with President Joe Biden in office, CPS and its owners agreed to repay $4.1 million — less than 10% of the damages sought in the suit — and the case was closed.
In the settlement, Davis agreed not to take any job where he would ever again bill Medicare or other federal health care programs. He was not required to personally repay anything.
Martin, who represented one of the whistleblowers who first raised allegations against Davis and CPS, said the leniency that Trump showed to him and other health care fraudsters may discourage DOJ employees from pursuing similar investigations during his second term.
"There are a lot of rank-and-file people who are operating at the lowest point in their professional careers, where they've seen a lot of their work essentially be water under the bridge," Martin said. "That's got to be really demoralizing."
It's a holy grail of health care: forcing the industry to reveal prices negotiated between health plans and hospitals — information that had long been treated as a trade secret. And among the flurry of executive orders President Donald Trump signed during his first five weeks back in office was a promise to "Make America Healthy Again" by giving patients accurate health care prices.
The goal is to force hospitals and health insurance companies to make it easier for consumers to compare the actual prices of medical procedures and prescription drugs. Trump gave his administration until the end of May to come up with a standard and a mechanism to make sure the health care industry complies.
But Trump's 2025 order is also a symbol of how little progress the country has made since he issued a similar directive nearly six years ago. Consumers find it only partially useful, and the quality of the information is spotty.
A ‘Bold' First Step That Fizzled
The 2019 order was "pretty bold," said Gary Claxton, a senior vice president at KFF, a health information nonprofit that includes KFF Health News. "They basically went at the providers and the plans and said, ‘All this data you think is confidential we're not going to make confidential anymore.'"
What followed was, to consumer advocacy groups, a disappointment. Hospitals and insurers posted on websites voluminous, complex, and confusing data about their prices. The information has been a challenge for even experts in health care pricing to navigate, let alone consumers. Some members of Congress filed legislation to put the force of law behind price transparency requirements; those bills died. And President Joe Biden's administration was criticized for not more stringently enforcing the regulations, with one consumer advocacy group even buying a Super Bowl ad featuring the rapper Fat Joe alleging that "hospitals and insurers hide their prices."
Trump's new order, signed in February, said that hospitals and health plans "were not adequately held to account when their price transparency data was incomplete or not even posted at all."
The Government Accountability Office reported in October that the Centers for Medicare & Medicaid Services didn't know whether prices reported by the health care industry were correct or complete. But CMS, which regulates hospitals, now plans to "systematically monitor compliance" and help institutions understand the requirements, said Catherine Howden, an agency spokesperson.
Howden did not answer questions about whether CMS staffers overseeing price transparency compliance have been fired as part of the Trump administration's wide-ranging effort to cut the federal workforce.
'Zombie' Rates and Other Inconsistencies
Meanwhile, independent researchers have found numerous problems with the quality of price data both hospitals and health insurers do share with consumers.
A recent report from the Peterson-KFF Health System Tracker found that data reported by four health insurers in New York City often included prices that they say they pay hospitals for services that those health providers don't — or can't — provide. These are called "ghost" or "zombie" rates. For example, the health plans reported dentists, optometrists, and audiologists receiving payments for knee replacements, gastrointestinal exams, and other procedures unrelated to their specialties.
In other cases, the data included different prices for the same service paid for by the same insurer at the same hospital. UnitedHealthcare, for example, reported paying New York-Presbyterian/Weill Cornell Medical Center three rates — $47,000, $64,000, and $70,000 — to treat a heart attack.
Or, the insurers reported paying the same price for vastly different services. Aetna, for example, said it paid exactly $6,292 to Mount Sinai Beth Israel hospital for the treatment of respiratory infections, heart attacks, cancers of the digestive tract, kidney and urinary tract infections, and psychosis.
Neither UnitedHealthcare nor Aetna addressed the discrepancies in the data. Cole Manbeck, a spokesperson for UnitedHealthcare, said the insurer has met price transparency requirements and urged members "to use our cost-estimator tools for exact costs based on their specific health plan." Aetna spokesperson Shelly Bendit referred questions to AHIP, a lobbying and trade association for insurers.
Health insurers have "strongly supported" price transparency, said Chris Bond, a spokesperson for AHIP. The group will work with the Trump administration to provide transparency "in a way that is meaningful for the end user, while also promoting a competitive private market," Bond said.
What's a Consumer To Do?
Estimates and total prices aren't very useful for consumers, who are mainly interested in what they'll ultimately have to pay out-of-pocket, said David Cutler, a professor of applied economics at Harvard University. That can vary by health plan, depending on deductibles, copayments, and other fees.
"Most of the price transparency information doesn't have that," he said.
It also doesn't give consumers information about the quality of care, Cutler added, which can lead to an old bias. "It's kind of like wine when you go to the restaurant," he said. "People assume that the more expensive wine is better."
Cutler said he's skeptical that price transparency will lower costs for patients. But he said it may offer insight to hospitals and health plans about what their competitors are charging and paying for services — knowledge that could inadvertently lead to price increases if hospitals that receive a lower rate than a competitor demand higher reimbursement from health plans.
Trump's recent executive order notes that the top quarter of the most expensive health service prices have dropped by 6.3% a year since his 2019 order.
However, the same research referenced in the executive order showed that the bottom quarter of services got more expensive, at a rate of about 3.4% per year, according to the analysis by Turquoise Health, a health care price data firm that examined rates at more than 200 hospitals in the 10 largest U.S. markets.
Some patients say that with research and persistence, they've been able to make price transparency work for them.
Theresa Schmotzer, 50, of Goodyear, Arizona, said she used hospital price data to save nearly $3,000 on outpatient surgery to have a fibroid removed last year.
Schmotzer, who has health insurance, said the hospital first told her she would owe $3,700 for the procedure and wanted the payment upfront. But she was skeptical.
She said her health insurer was unable to quote a price for the procedure or specify how much she would owe. The morning of the surgery, Schmotzer said, she found a spreadsheet online at PatientRightsAdvocate.org that included different prices paid by insurers, including hers. The reported price for the procedure was closer to $700, she said.
Schmotzer said she took a printout of the spreadsheet to the hospital and presented it during preadmission. She paid her $300 deductible and told the hospital to bill her for the rest.
A few months later, she said, the bill arrived in the mail for the remaining $400, which she paid.
When people go for surgery and aren't clear upfront what the cost will be, it stokes fear, she said. "Because they're going in blind."
Next Steps
Hospitals say they want to work with federal regulators and comply with reporting requirements, said Ariel Levin, director of coverage policy for the American Hospital Association, which represents about 5,000 institutions. Levin said consumers should be given the price of services and "a more comprehensive estimate" that represents an entire episode of care and the amount they'll owe out-of-pocket, based on their health plan.
CMS has developed rules since Trump's 2019 order to make price information reported by hospitals and health plans easier to understand, and the agency has fined more than a dozen hospitals for failing to comply.
Federal rules allow hospitals to report an estimate, a price range, or a historical rate for their services, while health plans can adjust prices based on factors like the severity of the case, the length of treatment, and a patient's age.
KFF's Claxton said that such flexibility doesn't allow for "apples-to-apples comparisons" and that the data must be reliable before researchers can use it to better understand health care costs. "It doesn't seem to be that yet," he said.
Much remains to be done before price transparency lives up to expectations that it will increase competition and lower costs, said Katie Martin, chief executive of the Health Care Cost Institute, a nonprofit research group.
Price transparency alone is not a silver bullet, Martin said. It's "a critical first step" for employers, lawmakers, regulators, and others to better understand how money flows through the health care system and how to make it more efficient, she said. "It's not the whole thing."