Firings at Federal Health Agencies Decimate Offices That Release Public Records

Public access to government records that document the handling of illnesses, faulty products, and safety lapses at health facilities will slow after mass firings at the federal Department of Health and Human Services swept out staff members responsible for releasing records, according to transparency advocates and health experts.

HHS Secretary Robert F. Kennedy Jr.’s layoffs across health agencies in recent days eliminated workers who handled Freedom of Information Act requests at the Centers for Disease Control and Prevention and cut FOIA staff at the FDA and the National Institutes of Health, said six current and former federal workers KFF Health News agreed not to name because they fear retaliation and are not authorized to speak to the press.

FOIA is a transparency law that guarantees public access to the inner workings of federal agencies by requiring officials to release government documents. The 1966 law is a crucial tool for law firms, advocates, businesses, journalists, and the general public. It has been used to hold officials accountable and uncover harm, corruption, and political meddling in policymaking.

At HHS, FOIA requests are used to obtain a litany of records, including detailed CDC information about large outbreaks of food and waterborne illnesses, and FDA inspection reports of facilities that make food, drugs, medical devices, and dental products.

Peter Lurie, president of the Center for Science in the Public Interest, said the FOIA cuts would have “an enormous effect on patient safety” and are “antithetical” to Kennedy’s promise to bring “radical transparency” to federal health agencies.

“It is simply not possible to honorably make that claim while decimating the staff,” Lurie said. “Can we rely particularly on this government to be forthcoming about the number of cases in an outbreak? You need FOIA to be able to take the lid off of that.”

HHS spokesperson Vianca Rodriguez Feliciano declined to respond on the record to questions about the department’s plans for processing FOIA requests from the CDC, FDA, and NIH.

Gunica Singh, staff attorney for the Reporters Committee for Freedom of the Press, said the FOIA layoffs were almost certain to further slow the release of public records, which often took months or years before the cuts.

“What we need to be doing is the opposite of what’s happening now: hiring more staff,” she said.

Many records are disclosed only in response to FOIA requests. For example, during the covid-19 pandemic, FOIA requests forced the FDA to release internal documents showing little evidence to support using hydroxychloroquine to treat covid, even though President Donald Trump heavily promoted the drug.

Scientific researchers have used the law to obtain clinical trial data to assess whether drugs are safe and effective, or to get more details about adverse events associated with drugs and medical devices. Lurie said obtaining more information about adverse events is particularly important in serving as a bulwark against cherry-picking data or manipulating what’s available online to spread disinformation about the safety of vaccines and other products.

All these efforts will be slowed by the purge of FOIA offices, said Michael Morisy, CEO of MuckRock, a nonprofit group that helps journalists and others file public records requests. Scientists will have less to study. Attorneys and advocates will struggle to build cases and fight for causes. Simply, Americans will know less about their government and the industries it regulates and be less able to hold them both to account.

“I think one thing we’ve learned is that if there’s less watchdogging over an issue, that issue gets worse,” Morisy said. “I really do think that we are going to see companies become more lax with food safety, companies become more lax with consumer safety.”

Thousands of pending FOIA requests are likely to be affected.

During fiscal 2024 — from October 2023 through September 2024 — the CDC, FDA, and NIH received more than 15,000 FOIA requests and provided at least some records in response to more than 10,000, according to HHS’ most recent annual FOIA report.

Those requests were submitted by university researchers, state governments, laboratories, pharmaceutical companies, animal rights groups, law firms, and news organizations, including KFF Health News. Records sought by law firms appear related to investigations of illnesses, outbreaks, drugs, medical devices, and products used by countless Americans.

Morisy and Singh said filling requests is more complicated than many realize, often requiring an in-depth understanding of complex agencies. That’s why it’s important to house FOIA staff within each agency rather than consolidate them.

“We are sacking the entire staff and sacking all of that knowledge,” Morisy said. “And I just don’t see how these things continue to function.”

David Rousseau, the publisher of KFF Health News, serves on the board of the Center for Science in the Public Interest.

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

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    The House Speaker’s Eyeing Big Cuts to Medicaid. In His Louisiana District, It’s a Lifeline.

    MANSFIELD, La. — When Desoto Regional Health System took out $36 million in loans last year to renovate a rural hospital that opened in 1952, officials were banking on its main funding source remaining stable: Medicaid, the joint federal-state health program for low-income people and the disabled.

    But those dollars are now in jeopardy, as President Donald Trump and the GOP-controlled Congress move to shrink the nearly $900 billion health program that covers more than 1 in 5 Americans.

    Desoto CEO Todd Eppler said Medicaid cuts could make it harder for his hospital to repay the loans and for patients to access care.

    “I just hope that the people who are making these decisions have thought deeply about it and have some context of the real-world implications,” he said, “because it’s going to affect us as a hospital and going to affect our patients.”

    One of the decision-makers is Eppler’s representative in Congress: House Speaker Mike Johnson, who lives about 35 miles north of here. He said he knows the Republican leader and his staff understand hospitals’ plight: The mother of Johnson’s chief of staff is CEO of a rural hospital in the district.

    “I’ve never met a congressman yet that wanted a rural hospital in their district to close, and certainly Mike is no exception to that rule,” Eppler said.

    Last year nearly 290,000 people in Johnson’s district were enrolled in Medicaid, about 38% of the total population, according to data compiled by KFF, the health information nonprofit that includes KFF Health News.

    About 118,000 of them are in the program thanks to the Affordable Care Act, which allowed states including Louisiana to expand Medicaid to cover low-income adults, many of whom were working in low-paying jobs that don’t provide health insurance.

    Louisiana ranks second in Medicaid enrollment, at nearly 32% — a reflection of the state’s high poverty rate. As Republicans weigh cuts, their actions could have dramatic consequences for their constituents here. Of the eight GOP-held House districts with the most Medicaid enrollees due to the expansion, four are in Louisiana. Johnson’s largely rural district ranks sixth in expansion enrollees.

    Among them is Chloe Stovall, 23, who works in the produce aisle at the SuperValu grocery store in Vivian, Louisiana. She said her take-home wage working full time is $200 a week. She doesn’t own a car and walks a mile to work.

    The store provides health coverage, but she said she won’t qualify until she’s worked there for a full year — and even then, it will cost more than Medicaid, which is free.

    “I’m just barely surviving,” she said.

    In February, Johnson pushed a budget resolution through the House that calls for cutting at least $880 billion over a decade from a pool of funding that includes Medicaid, to help fund an extension of Trump’s tax cuts and his border priorities. Republicans in Congress are now considering where to make cuts, and Medicaid is likely to take a big hit.

    Defending the plan, Johnson said that Medicaid is “not for 29-year-old males sitting on their couches playing video games.”

    Stovall said almost everyone she knows on Medicaid works at least one job. “I don’t even own a TV,” she said.

    Contacted for comment, Johnson’s office pointed to his remarks at a conference in Washington last month. “We’re going to be very careful not to cut a benefit for anyone who is eligible to receive it and relies upon it,” Johnson said.

    KFF Health News spoke with two dozen Medicaid enrollees in Johnson’s district. Most said they were unaware their congressman is leading the Republican charge to upend the program. Those informed of the Republican plan said it scares them.

    Some GOP members of Congress want to eliminate the ACA’s Medicaid expansion funding, which led to 20 million working-age adults gaining coverage and helped slash the nation’s uninsured rate to its lowest level in history. Forty states and the District of Columbia have agreed to the change, which promised extra federal funding in exchange for expanding eligibility.

    In this heavily Republican district, where Johnson won with 86% of the vote in November, 22% of residents live in poverty.

    Like Trump, Johnson says he wants cuts to Medicaid but hasn’t elaborated other than saying the program should not cover “able-bodied” adults without imposing a work requirement.

    “Everybody is committed” to preserving Medicaid benefits “for those who desperately need it and deserve it and qualify for it,” Johnson said at a news conference in February. “What we’re talking about is rooting out the fraud, waste, and abuse.”

    Medicaid recipients in Johnson’s district, told about GOP plans to cut the program, said their lives are hard enough in a state where the minimum wage is $7.25 an hour. Without Medicaid, they said, they couldn’t afford health coverage.

    In Vivian, near the borders with Arkansas and Texas, close to half of the 2,900 residents live in poverty. The main-street shops are mostly shuttered, except for a thrift store and a mom-and-pop restaurant that specializes in fried pork chops.

    “Most everybody you know is on Medicaid here,” said Doris Luccous, 24.

    Luccous said she makes $250 a week after taxes as a housekeeper at a nursing home while raising her 2-year-old daughter in her childhood home. While shopping with her father — who doesn’t work, because of a disability — she said she counts on Medicaid for her bipolar medicines and to pay for therapy appointments.

    “I don’t know where I would be without it,” she said.

    Neither Luccous nor Stovall said they voted in the last election, and neither knew that Johnson is their representative in Congress.

    Vivian has few large employers, and most employers pay the minimum wage, which hasn’t changed since 2009. “We are just stuck,” Stovall said.

    Still, she said, “it’s a community where everybody knows everybody, and people are always willing to lend a hand because so many are in difficult financial circumstances.”

    Willie White is CEO of David Raines Community Health Centers, which operates six outpatient clinics in northwestern Louisiana that serve primarily Medicaid enrollees. He said that Louisiana already ranks among the worst states for people’s health and that Medicaid cuts would only worsen the situation.

    “You cannot expect health outcomes to improve if people can’t afford to access care,” White said.

    While the clinics provide primary and dental care on a sliding fee scale for uninsured patients, signing them up for Medicaid gives them better access to specialists and brings the health centers revenue to cover the cost of delivering care.

    Many of the centers’ patients gained coverage through Medicaid expansion. Afterward, rates of screenings for colon and cervical cancer went from 10% to 50%, White said. 

    But if Congress cuts Medicaid, the health centers would be forced to cut services, he said.

    “Mike Johnson has been here and knows us, and he and his office have been responsive about our issues,” White said. “The message in prior years was, ‘We need additional funding,’ but now it is asking for no cuts.”

    Community health centers, which in 2023 provided care nationally to more than 32 million mostly low-income people, have seen funding increases from Republicans and Democrats for decades.

    “Everyone is supportive, but the question remains what that support will look like under the current administration,” White said. “If there are to be reductions, they need to be done with a scalpel.”

    Expecting cuts, the health centers have already restricted travel and put a hold on filling vacant positions, White said.

    Sitting in a David Raines clinic in Bossier City, Benjamin Andrade, 57, said having Medicaid has been a lifesaver since he needed heart surgery in 2020. Andrade is a chef and said he supports his wife and two children on $14 an hour.

    He had not heard about any potential cuts to the program. Without Medicaid, he said, “it would be very hard for me to pay for all the medicines I take.”

    Dominique Youngblood, 31, who was at the clinic for a dental checkup, said she’s had Medicaid most of her life. “Medicaid helps me so I don’t have to pay out-of-pocket going to the doctors,” she said.

    Youngblood, who has two children, makes $12 an hour at a day care center. Asked about GOP efforts to scale back the program, she said, “It’s not fair, because it helps a lot of people who cannot afford medications and emergency room trips, and those are costs you can’t control.”

    Back in Mansfield, Eppler’s hospital is more than just a health facility — it’s where many people in town come for lunch. The cafeteria was packed on a recent Friday as workers served boiled shrimp, fried okra, and baked fish.

    Eppler said he’s aware Republicans in Congress are targeting a system of taxes that some states, including Louisiana, levy on hospitals and other health providers to draw down more federal Medicaid funding. That money helps finance what are known as supplemental payments to providers. Some conservatives belittle the extra funding as “money laundering.”

    But that money accounts for about 15% of the DeSoto health system’s budget, said Eppler, a retired Air Force lieutenant colonel who has been CEO for a dozen years. “We are using that money to invest in the next 50 years of Desoto Parish, to build a hospital that they can have that will be sustainable,” he said.

    The supplemental payments, for example, help pay to provide mental health services at three outpatient clinics. “If that $4 million went away, we would have to limit services — it’s just that simple,” he said.

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

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      Trump’s Health Fraud Focus at Odds With Past Pardons

      Since returning to the White House, President Donald Trump has made combating fraud a centerpiece of his administration. Trump has said he will target fraud in Medicare, Medicaid, and Social Security programs, and his Republican allies in Congress have made combating fraud a key argument in their plans to slash Medicaid. Trump also has empowered the Elon Musk-led Department of Government Efficiency to make massive cuts to government spending, often claiming to snuff out fraud and waste in the process. 

      Trump’s present-day crackdown starkly contrasts with his history of showing leniency to convicted fraudsters. In his first and second terms, Trump has granted pardons or commutations to at least 68 people convicted of fraud crimes or interfering with fraud investigations, according to a KFF Health News review of court and clemency records, Department of Justice press releases, and news reports. At least 13 of those fraudsters were convicted in cases involving more than $1.6 billion in fraudulent claims filed with Medicare and Medicaid, according to the DOJ. 

      In interviews with KFF Health News, two experts on health care fraud said that Trump’s claimed focus appears to be a pretext for slashing spending that was legally appropriated by Congress. 

      “What’s been the focal point to date of the administration is not what anybody has ever referred to as health care fraud,” said Jacob Elberg, a former assistant U.S. attorney and law professor at Seton Hall University. “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, said Trump’s stepped-up interest may embolden informants to come forward. 

      “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.” 

      Even so, Trump’s past leniency to fraudsters might discourage the Justice Department from pursuing the whistleblowers’ claims, Martin said. 

      “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.” 

      The White House did not respond to requests for comment. 

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

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        Immigration Crackdowns Disrupt the Caregiving Industry. Families Pay the Price.

        Alanys Ortiz reads Josephine Senek’s cues before she speaks. Josephine, who lives with a rare and debilitating genetic condition, fidgets her fingers when she’s tired and bites the air when something hurts.

        Josephine, 16, has been diagnosed with tetrasomy 8p mosaicism, severe autism, severe obsessive-compulsive disorder, and attention-deficit/hyperactivity disorder, among other conditions, which will require constant assistance and supervision for the rest of her life.

        Ortiz, 25, is Josephine’s caregiver. A Venezuelan immigrant, Ortiz helps Josephine eat, bathe, and perform other daily tasks that the teen cannot do alone at her home in West Orange, New Jersey. Over the past 2½ years, Ortiz said, she has developed an instinct for spotting potential triggers before they escalate. She closes doors and peels barcode stickers off apples to ease Josephine’s anxiety.

        But Ortiz’s ability to work in the U.S. has been thrown into doubt by the Trump administration, which ordered an end to the temporary protected status program for some Venezuelans on April 7. On March 31, a federal judge paused the order, giving the administration a week to appeal. If the termination goes through, Ortiz would have to leave the country or risk detention and deportation.

        “Our family would be gutted beyond belief,” said Krysta Senek, Josephine’s mother, who has been trying to win a reprieve for Ortiz.

        Americans depend on many such foreign-born workers to help care for family members who are older, injured, or disabled and cannot care for themselves. Nearly 6 million people receive personal care in a private home or a group home, and about 2 million people use these services in a nursing home or other long-term care institution, according to a Congressional Budget Office analysis.

        Increasingly, the workers who provide that care are immigrants such as Ortiz. The foreign-born share of nursing home workers rose three percentage points from 2007 to 2021, to about 18%, according to an analysis of census data by the Baker Institute for Public Policy at Rice University in Houston.

        And foreign-born workers make up a high share of other direct care providers. More than 40% of home health aides, 28% of personal care workers, and 21% of nursing assistants were foreign-born in 2022, compared with 18% of workers overall that year, according to Bureau of Labor Statistics data.

        That workforce is in jeopardy amid an immigration crackdown President Donald Trump launched on his first day back in office. He signed executive orders that expanded the use of deportations without a court hearing, suspended refugee resettlements, and more recently ended humanitarian parole programs for nationals of Cuba, Haiti, Nicaragua, and Venezuela.

        In invoking the Alien Enemies Act to deport Venezuelans and attempting to revoke legal permanent residency for others, the Trump administration has sparked fear that even those who have followed the nation’s immigration rules could be targeted.

        “There's just a general anxiety about what this could all mean, even if somebody is here legally,” said Katie Smith Sloan, president of LeadingAge, a nonprofit representing more than 5,000 nursing homes, assisted living facilities, and other services for aging patients. “There's concern about unfair targeting, unfair activity that could just create trauma, even if they don't ultimately end up being deported, and that's disruptive to a health care environment.”

        Shutting down pathways for immigrants to work in the United States, Smith Sloan said, also means many other foreign workers may go instead to countries where they are welcomed and needed.

        “We are in competition for the same pool of workers,” she said.

        Growing Demand as Labor Pool Likely To Shrink

        Demand for caregivers is predicted to surge in the U.S. as the youngest baby boomers reach retirement age, with the need for home health and personal care aides projected to grow about 21% over a decade, according to the Bureau of Labor Statistics. Those 820,000 additional positions represent the most of any occupation. The need for nursing assistants and orderlies also is projected to grow, by about 65,000 positions.

        Caregiving is often low-paying and physically demanding work that doesn’t attract enough native-born Americans. The median pay ranges from about $34,000 to $38,000 a year, according to the Bureau of Labor Statistics.

        Nursing homes, assisted living facilities, and home health agencies have long struggled with high turnover rates and staffing shortages, Smith Sloan said, and they now fear that Trump’s immigration policies will choke off a key source of workers, leaving many older and disabled Americans without someone to help them eat, dress, and perform daily activities.

        With the Trump administration reorganizing the Administration for Community Living, which runs programs supporting older adults and people with disabilities, and Congress considering deep cuts to Medicaid, the largest payer for long-term care in the nation, the president’s anti-immigration policies are creating “a perfect storm” for a sector that has not recovered from the covid-19 pandemic, said Leslie Frane, an executive vice president of the Service Employees International Union, which represents nursing facility workers and home health aides.

        The relationships caregivers build with their clients can take years to develop, Frane said, and replacements are already hard to find.

        In September, LeadingAge called for the federal government to help the industry meet staffing needs by raising caps on work-related immigration visas, expanding refugee status to more people, and allowing immigrants to test for professional licenses in their native language, among other recommendations.

        But, Smith Sloan said, “There's not a lot of appetite for our message right now.”

        The White House did not respond to questions about how the administration would address the need for workers in long-term care. Spokesperson Kush Desai said the president was given “a resounding mandate from the American people to enforce our immigration laws and put Americans first” while building on the “progress made during the first Trump presidency to bolster our healthcare workforce and increase healthcare affordability.”

        Refugees Fill Nursing Home Jobs in Wisconsin

        Until Trump suspended the refugee resettlement program, some nursing homes in Wisconsin had partnered with local churches and job placement programs to hire foreign-born workers, said Robin Wolzenburg, a senior vice president for LeadingAge Wisconsin.

        Many work in food service and housekeeping, roles that free up nurses and nursing assistants to work directly with patients. Wolzenburg said many immigrants are interested in direct care roles but take on ancillary roles because they cannot speak English fluently or lack U.S. certification.

        Through a partnership with the Wisconsin health department and local schools, Wolzenburg said, nursing homes have begun to offer training in English, Spanish, and Hmong for immigrant workers to become direct care professionals. Wolzenburg said the group planned to roll out training in Swahili soon for Congolese women in the state.

        Over the past 2½ years, she said, the partnership helped Wisconsin nursing homes fill more than two dozen jobs. Because refugee admissions are suspended, Wolzenburg said, resettlement agencies aren’t taking on new candidates and have paused job placements to nursing homes.

        Many older and disabled immigrants who are permanent residents rely on foreign-born caregivers who speak their native language and know their customs. Frane with the SEIU noted that many members of San Francisco’s large Chinese American community want their aging parents to be cared for at home, preferably by someone who can speak the language.

        “In California alone, we have members who speak 12 different languages,” Frane said. “That skill translates into a kind of care and connection with consumers that will be very difficult to replicate if the supply of immigrant caregivers is diminished.”

        The Ecosystem a Caregiver Supports

        Caregiving is the kind of work that makes other work possible, Frane said. Without outside caregivers, the lives of the patient and their loved ones become more difficult logistically and economically.

        “Think of it like pulling out a Jenga stick from a Jenga pile, and the thing starts to topple,” she said.

        Thanks to the one-on-one care from Ortiz, Josephine has learned to communicate when she’s hungry or needs help. She now picks up her clothes and is learning to do her own hair. With her anxiety more under control, the violent meltdowns that once marked her weeks have become far less frequent, Ortiz said.

        “We live in Josephine’s world,” Ortiz said in Spanish. “I try to help her find her voice and communicate her feelings.”

        Ortiz moved to New Jersey from Venezuela in 2022 as part of an au pair program that connects foreign-born workers with people who are older or children with disabilities who need a caregiver at home. Fearing political unrest and crime in her home country, she got temporary protected status when her visa expired last year to keep her authorization to work in the United States and stay with Josephine.

        Losing Ortiz would upend Josephine’s progress, Senek said. The teen would lose not only a caregiver, but also a sister and her best friend. The emotional impact would be devastating.

        “You have no way to explain to her, ‘Oh, Alanys is being kicked out of the country, and she can't come back,’” she said.

        It’s not just Josephine: Senek and her husband depend on Ortiz so they can work full-time jobs and take care of themselves and their marriage. “She's not just an au pair,” Senek said.

        The family has called its congressional representatives for help. Even a relative who voted for Trump sent a letter to the president asking him to reconsider his decision.

        In the March 31 court decision, U.S. District Judge Edward Chen wrote that canceling the protection could “inflict irreparable harm on hundreds of thousands of persons whose lives, families, and livelihoods will be severely disrupted.”

        ‘Doing the Work That Their Own People Don’t Want To Do’

        News of immigration dragnets that sweep up lawfully present immigrants and mass deportations are causing a lot of stress, even for those who have followed the rules, said Nelly Prieto, 62, who cares for an 88-year-old man with Alzheimer’s disease and a man in his 30s with Down syndrome in Yakima County, Washington.

        Born in Mexico, she immigrated to the United States at age 12 and became a U.S. citizen under a law authorized by President Ronald Reagan that made any immigrant who entered the country before 1982 eligible for amnesty. So, she’s not worried for herself. But, she said, some of her co-workers working under H-2B visas are very afraid.

        “It kills me to see them when they talk to me about things like that, the fear in their faces,” she said. “They even have letters, notarized letters, ready in case something like that happens, saying where their kids can go.”

        Foreign-born home health workers feel they are contributing a valuable service to American society by caring for its most vulnerable, Prieto said. But their efforts are overshadowed by rhetoric and policies that make immigrants feel as if they don’t belong.

        “If they cannot appreciate our work, if they cannot appreciate us taking care of their own parents, their own grandparents, their own children, then what else do they want?” she said. “We’re only doing the work that their own people don’t want to do.”

        In New Jersey, Ortiz said life has not been the same since she received the news that her TPS authorization was slated to end soon. When she walks outside, she fears that immigration agents will detain her just because she’s from Venezuela.

        She’s become extra cautious, always carrying proof that she’s authorized to work and live in the U.S.

        Ortiz worries that she’ll end up in a detention center. But even if the U.S. now feels less welcoming, she said, going back to Venezuela is not a safe option.

        “I might not mean anything to someone who supports deportations,” Ortiz said. “I know I'm important to three people who need me."

        This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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

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          What’s Lost: Trump Whacks Tiny Agency That Works To Make the Nation’s Health Care Safer

          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.

          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.”

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

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            How Much Will That Surgery Cost? 🤷 Hospital Prices Remain Largely Unhelpful.

            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.”

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

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              Trump Says He’ll Stop Health Care Fraudsters. Last Time, He Let Them Walk.

              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: $70 Million 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.”

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

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