Hundreds of workers at the National Institutes of Health on Monday openly protested the Trump administration’s cuts to the agency and consequences for human lives, writing in a sharply worded letter that its actions are causing “a dramatic reduction in life-saving research.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Senior correspondent Arthur Allen contributed to this report.

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

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This article first appeared on KFF Health News and is republished here under a Creative Commons license.

The National Institutes of Health employee said she knew things would be difficult for federal workers after Donald Trump was elected. But she never imagined it would be like this.

Focused on Alzheimer’s and other dementia research, the worker is among thousands who abruptly lost their jobs in the Trump administration’s federal workforce purge. The way she was terminated — in February through a boilerplate notice alleging poor performance, something she pointedly said was “not true” — made her feel she was “losing hope in humans.”

She said she can’t focus or meditate, and can barely go to the gym. At the urging of her therapist, she made an appointment with a psychiatrist in March after she felt she’d “hit the bottom,” she said.

“I am going through hell,” said the employee, who worked at the National Institute on Aging, one of 27 centers that make up the NIH. The worker, like others interviewed for this story, was granted anonymity because of the fear of professional retaliation.

“I know I am a mother. I am a wife. But I am also a person who was very happy with her career,” she said. “They took my job and my life from my hands without any reason.”

President Trump and his allies have increasingly denigrated the roughly 2 million people who make up the federal workforce, 80% of whom work outside the Washington, D.C., area. Trump has said federal workers are “destroying this country,” called them “crooked” and “dishonest,” and insinuated that they’re lazy. “Many of them don’t work at all,” he said earlier this month.

Elon Musk — who is the world’s richest person and whose Department of Government Efficiency, created by a Trump executive order, is infiltrating federal agencies and spearheading mass firings — has claimed without evidence that “there are a number of people on the government payroll who are dead” and others “who are not real people.” At a conference for conservatives in February, Musk brandished what he called “the chain saw for bureaucracy” and said that “waste is pretty much everywhere.”

The firings that began in February are taking a significant toll on federal employees’ mental health. Workers said they feel overwhelmed and demoralized, have obtained or considered seeking psychiatric care and medication, and feel anxious about being able to pay bills or afford college for their children.

Federal employees are bracing for more layoffs after agencies were required to deliver plans by this month for large-scale staff reductions. Compounding the uncertainty: After judges ruled that some initial firings were illegal, agencies have rehired some workers and placed others on paid administrative leave. Then, Trump on March 20 issued a memo giving the Office of Personnel Management more power to fire people across agencies.

Researchers who study job loss say these mass layoffs not only are disrupting the lives of tens of thousands of federal workers but also will reverberate out to their spouses, children, and communities.

“I’d expect this will have long-lasting impacts on these people’s lives and those around them,” said Jennie Brand, a professor of sociology at UCLA who wrote a paper about the implications of job loss. “We can see this impact years down the road.”

Studies have shown that people who are unemployed experience greater anxiety, depression, and suicide risk. The longer the period of unemployment, the worse the effects.

Couples fight more when one person loses a job, and if it’s a man, divorce rates increase.

Children with an unemployed parent are more likely to do poorly in school, repeat a grade, or drop out. It can even affect whether they go to college, Brand said. There’s an “intergenerational impact of instability,” she said.

And it doesn’t stop there. When people lose their jobs, especially when it’s many people at once, the wealth and resources available in their community are reduced. Kids see fewer employed role models. As families are forced to move, neighborhood stability gets upended. Unemployed people often withdraw from social and civic life, avoiding community gatherings, church, or other places where they might have to discuss or explain their job loss.

Although getting a new job can alleviate some of these problems, it doesn’t eliminate them, Brand said.

“It’s not as if people just get new jobs and then pick up the activities they used to be involved with,” she said. “There’s not a quick recovery.”

Slashing Cultural Norms

The firings are upending a long-standing norm of the public sector — in exchange for earning less money compared with private-sector work, people had greater job security and more generous benefits. Now that’s no longer the case, fired workers said in interviews.

With the American economy moving toward temporary and gig jobs, landing a traditional government job was supposed to be “like you’ve got the golden goose,” said Blake Allan, a professor of counseling psychology at the University of Houston who researches how the quality of work affects people’s lives.

Even federal workers who are still employed face the daily question of whether they’ll be fired next. That constant state of insecurity, Allan said, can create chronic stress, which is linked to anxiety, depression, digestive problems, heart disease, and a host of other health issues.

One employee at the Centers for Medicare & Medicaid Services, who was granted anonymity to avoid professional retaliation, said the administration’s actions seem designed to cause enough emotional distress that workers voluntarily leave. “I feel like this ax will always be over my head for as long as I’m here and this administration is here,” the employee said.

Federal workers who passed on higher-paying private sector jobs because they wanted to serve their country may feel especially gutted to hear Trump and Musk denigrate their work as wasteful.

“Work is such a fundamental part of our identity,” Allan said. When it’s suddenly lost, “it can be really devastating to your sense of purpose and identity, your sense of social mattering, especially when it’s in a climate of devaluing what you do.”

Andrew Hazelton, a scientist in Florida, was working on improving hurricane forecasts when he was fired in February from the National Oceanic and Atmospheric Administration. The mass firings were carried out “with no humanity,” he said. “And that’s really tough.”

Hazelton became a federal employee in October but had worked alongside NOAA scientists for over eight years, including as an employee at the University of Miami. He lost his job as part of a purge targeting probationary workers, who lack civil service protections against firings.

His friends set up a GoFundMe crowdfunding page to provide a financial cushion for him, his wife, and their four children. Then in March, after a federal judge’s order requiring federal agencies to rescind those terminations, he was notified that he had been reinstated on paid administrative leave.

“It’s created a lot of instability,” said Hazelton, who still isn’t being allowed to do his work. “We just want to serve the public and get our forecasts and our data out there to help people make decisions, regardless of politics.”

Health Coverage Collateral

Along with their jobs, many federal workers are losing their health insurance, leaving them ill equipped to seek care just as they and their families are facing a tidal wave of potential mental and physical health consequences. And the nation’s mental health system is already underfunded, understaffed, and overstretched. Even with insurance, many people wait weeks or months to receive care.

“Most people don’t have a bunch of money sitting around to spend on therapy when you need to cover your mortgage for a couple months and try to find a different job,” Allan said.

A second NIH worker considered talking to a psychiatrist and potentially going on an antidepressant because of anxiety after being fired in February.

“And then the first thought after that was: ‘Oh, I’m about to not have insurance. I can’t do that,’” said the worker, who was granted anonymity to avoid professional retaliation. The worker’s health benefits were set to end in April — leaving too little time to get an appointment with a psychiatrist, let alone start a prescription.

“I don’t want to go on something and then have to stop it immediately,” the worker said.

The employee, one of several NIH workers reinstated this month, still fears getting fired again. The worker focuses on Alzheimer’s and related dementias and was inspired to join the agency because a grandmother has the disease.

The worker worries that “decades of research are going to be gone and people are going to be left with nothing.”

“I go from anxiety to deep sadness when I think about my own family,” the employee said.

The NIH, with its $47 billion annual budget, is the largest public funder of biomedical research in the world. The agency awarded nearly 59,000 grants in fiscal 2023, but the Trump administration has begun canceling hundreds of grants on research topics that new political appointees oppose, including vaccine hesitancy and the health of LGBTQ+ populations.

The NIH worker who worked at the National Institute on Aging was informed in mid-March that she would be on paid administrative leave “until further notice.” She said she is not sure whether she would find a similar job, adding that she “cannot be at home doing nothing.”

Apart from loving her job, she said, she has one child in college and another in high school and needs stable income. “I don’t know what I’m going to do next.”

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

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

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Reesha Ahmed was on cloud nine.

It was January and Ahmed was at an OB-GYN’s office near her home in Venus, Texas, for her first prenatal checkup. After an ultrasound, getting anti-nausea medication, and discussing her pregnancy care plan, she said, a nurse made a convenient suggestion: Head to the lab just down the hall for a standard panel of tests.

The lab was inside Texas Health Hospital Mansfield, which opened in December 2020 in a Dallas-Fort Worth suburb. Ahmed, just eight weeks pregnant, said the doctor told her everything about the visit was routine. “Nothing really stood out,” Ahmed said. “And, of course, there’s just a lot of excitement, and so I really didn’t think twice about anything.”

Her blood tests checked for multiple sexually transmitted infections, her blood type, and various hormones. Within days, Ahmed began bleeding and her excitement turned to fear. A repeat ultrasound in early February showed no fetus.

“My heart kind of fell apart at that moment because I knew exactly what that meant,” she said. She would have a miscarriage.

Then the bills came.

The Patient: Reesha Ahmed, 32, has an Anthem Blue Cross and Blue Shield policy through her employer.

Medical Services: An analysis of Pap smear results and several blood tests in tandem with Ahmed’s initial prenatal visit, including complete blood count, blood type, and testing for STIs such as hepatitis B, syphilis, and HIV.

Service Provider: Ahmed got her tests at Texas Health Mansfield, a tax-exempt hospital jointly operated by Texas Health Resources, a faith-based nonprofit health system, and AdventHealth, another religious nonprofit.

Total Bill: The hospital charged $9,520.02 for the blood tests and pathology services. The insurer negotiated that down to $6,700.50 and then paid $4,310.38, leaving Ahmed with a lab bill of $2,390.12.

What Gives: Ahmed’s situation reveals how hospital-based labs often charge high prices for tests. Even when providers are in network, a patient can be on the hook for thousands of dollars for common blood tests that are far cheaper in other settings. Research shows hospitals typically charge much more than physicians’ offices or independent commercial labs for the same tests.

The situation was particularly difficult for Ahmed because she had lost the pregnancy.

“To come to terms with it mentally, emotionally, physically — dealing with the ramifications of the miscarriage — and then having to muster up the fighting strength to then start calling your insurance, and the billing department, the provider’s office, trying to fight back a bill that you don’t feel like you were correctly sent? It’s just, it’s a lot,” she said.

In Texas, the same lab tests were at least six times as expensive in a hospital as in a doctor’s office, according to research from the Health Care Cost Institute, a nonprofit that examines health spending.

The markup can be even higher depending on the test. HCCI data, based on 2019 prices, shows the median price for a complete blood count in Texas was $6.34 at an independent lab and $58.22 at a hospital. Texas Health charged Ahmed $206.69 for that test alone.

“It is convenient to get your lab done right in the same building,” said Jessica Chang, a senior researcher at HCCI, but “many patients are not thinking about how highly marked up these lab tests are.” Chang said she suspects many hospitals tack on their overhead costs when they bill insurance.

Anthem also charged Ahmed for at least four tests that most insurance plans would consider preventive care and therefore covered at no cost to patients under the Affordable Care Act’s requirements for covering preventive care, which includes aspects of prenatal care. Her EOBs, or “explanation of benefits” notices, show she paid out-of-pocket for a test identifying her Rh factor — which detects a protein on the surface of red blood cells — as well as for tests for hepatitis B, hepatitis C, and syphilis.

Asked to review Ahmed’s tests, Anthem spokesperson Emily Snooks wrote in an email to KFF Health News that the claims “were submitted as diagnostic — not preventive — and were paid according to the benefits in the member’s health plan.”

There “definitely shouldn’t be” out-of-pocket costs for those screenings, said Sabrina Corlette, co-director of Georgetown University’s Center on Health Insurance Reforms.

The Centers for Disease Control and Prevention recommends screening pregnant patients for several infectious diseases that pose major risks during pregnancy. Ina Park, a professor of family community medicine at the University of California-San Francisco and an expert on STIs, said the tests Ahmed received didn’t raise red flags from a clinical perspective. “It’s really more what the actual lab charged based on what the tests actually cost,” Park said. “This is a really exorbitant price.”

For example, Ahmed paid $71.86 in coinsurance for a hepatitis B test for which the hospital charged $418.55. The hospital charged $295.52 to screen for syphilis; her out-of-pocket cost was $50.74.

“You just wonder, is the insurance company really negotiating with this provider as aggressively as they should to keep the reimbursement to a reasonable amount?” Corlette said.

The Resolution: Ahmed refused to pay the bills and Texas Health sent the debt to collections. When she tried to get answers about the costs, she said she was bounced between the doctor’s office and the hospital billing department. Ahmed submitted a complaint to the Texas attorney general’s office, which passed it to the Texas Health and Human Services Commission. She never heard back.

According to Ahmed, a hospital representative suggested her bloodwork might have been coded incorrectly and agreed the charges “were really unusually high,” Ahmed said, but she was told there was nothing the hospital could do to change it. The hospital did not comment on the reason behind the high charge. And in a March 7 email, an AdventHealth employee told Ahmed the doctor’s office had “no control” over the hospital’s billing.

Ahmed filed an appeal with Anthem, but it was denied. The insurance company stated the claims were processed correctly under her benefits, which cover 80% of what the insurer agrees to pay for in-network lab services after she meets her deductible. Ahmed has a $1,400 deductible and a $4,600 out-of-pocket maximum for in-network providers.

“We depend on health care providers to submit accurate billing information regarding what medical care was needed and delivered,” Snooks said. Asked about reimbursements to the Texas Health lab, she added, “The claim was reimbursed based on the laboratory’s contract with the health plan.”

After a KFF Health News reporter contacted Texas Health on Oct. 9, the hospital called Ahmed on Oct. 10 and said it would zero out her bills and remove the charges from collections. Ahmed was relieved, “like a giant burden’s just been lifted off my shoulders.”

“It’s just been fighting this for 10 months now, and it’s finally gone,” she said.

Texas Health Resources and AdventHealth declined to respond to detailed questions about Ahmed’s charges and the tests she was directed to obtain.

“We are sorry Ms. Ahmed did not get clarity on her care with us. Our top priority is to provide our patients with safe, effective and medically appropriate care,” Laura Shea, a spokesperson for the hospital, said in an emailed statement.

The Takeaway: Ahmed’s problem demonstrates the pitfalls of using a hospital lab for routine testing.

For standard bloodwork “it’s really hard to argue that there’s a quality difference” between independent labs and hospitals that would warrant higher prices, Chang said. That holds true for other services, too, like imaging. “There’s nothing special about the machines that hospitals use for a CT or MRI scan. It’s the same machine.”

More from Bill of the Month

• When That Supposedly Free Annual Physical Generates a Bill Oct 30, 2023
• She Received Chemo in Two States. Why Did It Cost So Much More in Alaska? Sep 29, 2023
• She Paid Her Husband’s Hospital Bill. A Year After His Death, They Wanted More Money. Aug 29, 2023

Broadly, state and federal lawmakers are paying attention to this issue. Congress is considering legislation that would equalize payments for certain services regardless of whether they are provided in a hospital outpatient department or a doctor’s office, although not lab services. Hospitals have tried to fend off such a policy, known as “site-neutral payments.”

For example, the Lower Costs, More Transparency Act would require the same prices under Medicare for physician-administered drugs regardless of whether they’re given in a doctor’s office or an off-campus hospital outpatient department. That bill also would require labs to make public the prices they charge Medicare for tests. Another bill, the Bipartisan Primary Care and Health Workforce Act, would ban hospitals from charging commercial health plans some facility fees — which they use to cover operating or administrative expenses.

According to the National Conference of State Legislatures, Colorado, Connecticut, Ohio, New York, and Texas have limited providers’ ability to charge privately insured patients facility fees for certain services. Colorado, Connecticut, Maryland, and New York require health facilities to disclose facility fees to patients before providing care; Florida instituted similar requirements for free-standing emergency departments.

Patients should keep copies of itemized bills and insurance statements. While not the only evidence, those documents can help patients avoid out-of-pocket costs for recommended preventive screenings.

For now, patients can proactively avoid such extreme bills: When your doctor says you need blood tests, ask that the requisition be sent to a commercial lab like Labcorp or Quest Diagnostics that is in your network and have the tests done there. If they can’t do it electronically, ask for a paper requisition.

“Don’t always just go to the lab that your doctor recommends to you,” Corlette said.

Emily Siner reported the audio story.

Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

Subscribe to KFF Health News' free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

Reesha Ahmed was on cloud nine.

It was January and Ahmed was at an OB-GYN’s office near her home in Venus, Texas, for her first prenatal checkup. After an ultrasound, getting anti-nausea medication, and discussing her pregnancy care plan, she said, a nurse made a convenient suggestion: Head to the lab just down the hall for a standard panel of tests.

The lab was inside Texas Health Hospital Mansfield, which opened in December 2020 in a Dallas-Fort Worth suburb. Ahmed, just eight weeks pregnant, said the doctor told her everything about the visit was routine. “Nothing really stood out,” Ahmed said. “And, of course, there’s just a lot of excitement, and so I really didn’t think twice about anything.”

Her blood tests checked for multiple sexually transmitted infections, her blood type, and various hormones. Within days, Ahmed began bleeding and her excitement turned to fear. A repeat ultrasound in early February showed no fetus.

“My heart kind of fell apart at that moment because I knew exactly what that meant,” she said. She would have a miscarriage.

Then the bills came.

The Patient: Reesha Ahmed, 32, has an Anthem Blue Cross and Blue Shield policy through her employer.

Medical Services: An analysis of Pap smear results and several blood tests in tandem with Ahmed’s initial prenatal visit, including complete blood count, blood type, and testing for STIs such as hepatitis B, syphilis, and HIV.

Service Provider: Ahmed got her tests at Texas Health Mansfield, a tax-exempt hospital jointly operated by Texas Health Resources, a faith-based nonprofit health system, and AdventHealth, another religious nonprofit.

Total Bill: The hospital charged $9,520.02 for the blood tests and pathology services. The insurer negotiated that down to $6,700.50 and then paid $4,310.38, leaving Ahmed with a lab bill of $2,390.12.

What Gives: Ahmed’s situation reveals how hospital-based labs often charge high prices for tests. Even when providers are in network, a patient can be on the hook for thousands of dollars for common blood tests that are far cheaper in other settings. Research shows hospitals typically charge much more than physicians’ offices or independent commercial labs for the same tests.

The situation was particularly difficult for Ahmed because she had lost the pregnancy.

“To come to terms with it mentally, emotionally, physically — dealing with the ramifications of the miscarriage — and then having to muster up the fighting strength to then start calling your insurance, and the billing department, the provider’s office, trying to fight back a bill that you don’t feel like you were correctly sent? It’s just, it’s a lot,” she said.

In Texas, the same lab tests were at least six times as expensive in a hospital as in a doctor’s office, according to research from the Health Care Cost Institute, a nonprofit that examines health spending.

The markup can be even higher depending on the test. HCCI data, based on 2019 prices, shows the median price for a complete blood count in Texas was $6.34 at an independent lab and $58.22 at a hospital. Texas Health charged Ahmed $206.69 for that test alone.

“It is convenient to get your lab done right in the same building,” said Jessica Chang, a senior researcher at HCCI, but “many patients are not thinking about how highly marked up these lab tests are.” Chang said she suspects many hospitals tack on their overhead costs when they bill insurance.

Anthem also charged Ahmed for at least four tests that most insurance plans would consider preventive care and therefore covered at no cost to patients under the Affordable Care Act’s requirements for covering preventive care, which includes aspects of prenatal care. Her EOBs, or “explanation of benefits” notices, show she paid out-of-pocket for a test identifying her Rh factor — which detects a protein on the surface of red blood cells — as well as for tests for hepatitis B, hepatitis C, and syphilis.

Asked to review Ahmed’s tests, Anthem spokesperson Emily Snooks wrote in an email to KFF Health News that the claims “were submitted as diagnostic — not preventive — and were paid according to the benefits in the member’s health plan.”

There “definitely shouldn’t be” out-of-pocket costs for those screenings, said Sabrina Corlette, co-director of Georgetown University’s Center on Health Insurance Reforms.

The Centers for Disease Control and Prevention recommends screening pregnant patients for several infectious diseases that pose major risks during pregnancy. Ina Park, a professor of family community medicine at the University of California-San Francisco and an expert on STIs, said the tests Ahmed received didn’t raise red flags from a clinical perspective. “It’s really more what the actual lab charged based on what the tests actually cost,” Park said. “This is a really exorbitant price.”

For example, Ahmed paid $71.86 in coinsurance for a hepatitis B test for which the hospital charged $418.55. The hospital charged $295.52 to screen for syphilis; her out-of-pocket cost was $50.74.

“You just wonder, is the insurance company really negotiating with this provider as aggressively as they should to keep the reimbursement to a reasonable amount?” Corlette said.

The Resolution: Ahmed refused to pay the bills and Texas Health sent the debt to collections. When she tried to get answers about the costs, she said she was bounced between the doctor’s office and the hospital billing department. Ahmed submitted a complaint to the Texas attorney general’s office, which passed it to the Texas Health and Human Services Commission. She never heard back.

According to Ahmed, a hospital representative suggested her bloodwork might have been coded incorrectly and agreed the charges “were really unusually high,” Ahmed said, but she was told there was nothing the hospital could do to change it. The hospital did not comment on the reason behind the high charge. And in a March 7 email, an AdventHealth employee told Ahmed the doctor’s office had “no control” over the hospital’s billing.

Ahmed filed an appeal with Anthem, but it was denied. The insurance company stated the claims were processed correctly under her benefits, which cover 80% of what the insurer agrees to pay for in-network lab services after she meets her deductible. Ahmed has a $1,400 deductible and a $4,600 out-of-pocket maximum for in-network providers.

“We depend on health care providers to submit accurate billing information regarding what medical care was needed and delivered,” Snooks said. Asked about reimbursements to the Texas Health lab, she added, “The claim was reimbursed based on the laboratory’s contract with the health plan.”

After a KFF Health News reporter contacted Texas Health on Oct. 9, the hospital called Ahmed on Oct. 10 and said it would zero out her bills and remove the charges from collections. Ahmed was relieved, “like a giant burden’s just been lifted off my shoulders.”

“It’s just been fighting this for 10 months now, and it’s finally gone,” she said.

Texas Health Resources and AdventHealth declined to respond to detailed questions about Ahmed’s charges and the tests she was directed to obtain.

“We are sorry Ms. Ahmed did not get clarity on her care with us. Our top priority is to provide our patients with safe, effective and medically appropriate care,” Laura Shea, a spokesperson for the hospital, said in an emailed statement.

The Takeaway: Ahmed’s problem demonstrates the pitfalls of using a hospital lab for routine testing.

For standard bloodwork “it’s really hard to argue that there’s a quality difference” between independent labs and hospitals that would warrant higher prices, Chang said. That holds true for other services, too, like imaging. “There’s nothing special about the machines that hospitals use for a CT or MRI scan. It’s the same machine.”

Broadly, state and federal lawmakers are paying attention to this issue. Congress is considering legislation that would equalize payments for certain services regardless of whether they are provided in a hospital outpatient department or a doctor’s office, although not lab services. Hospitals have tried to fend off such a policy, known as “site-neutral payments.”

For example, the Lower Costs, More Transparency Act would require the same prices under Medicare for physician-administered drugs regardless of whether they’re given in a doctor’s office or an off-campus hospital outpatient department. That bill also would require labs to make public the prices they charge Medicare for tests. Another bill, the Bipartisan Primary Care and Health Workforce Act, would ban hospitals from charging commercial health plans some facility fees — which they use to cover operating or administrative expenses.

According to the National Conference of State Legislatures, Colorado, Connecticut, Ohio, New York, and Texas have limited providers’ ability to charge privately insured patients facility fees for certain services. Colorado, Connecticut, Maryland, and New York require health facilities to disclose facility fees to patients before providing care; Florida instituted similar requirements for free-standing emergency departments.

Patients should keep copies of itemized bills and insurance statements. While not the only evidence, those documents can help patients avoid out-of-pocket costs for recommended preventive screenings.

For now, patients can proactively avoid such extreme bills: When your doctor says you need blood tests, ask that the requisition be sent to a commercial lab like Labcorp or Quest Diagnostics that is in your network and have the tests done there. If they can’t do it electronically, ask for a paper requisition.

“Don’t always just go to the lab that your doctor recommends to you,” Corlette said.

Emily Siner reported the audio story.

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This article first appeared on KFF Health News and is republished here under a Creative Commons license.