After a routine doctor visit revealed Josie had lead poisoning, Hess quickly traced the source to the crumbling paint in her family’s century-old home in the Bayou St. John neighborhood. While it underwent lead remediation, the family stayed in a newer, lead-free house near Markey.

“Everyone was telling us the safest place to play was outside at playgrounds, so that’s where we went,” Hess said. Josie became a Markey regular, playing on the swings and slides.

Josie’s next blood test was a shock. “It skyrocketed,” Hess said. Josie’s lead levels had leaped to nearly five times the national health standard. The likely culprit, according to scientists at the time, was Josie’s favorite park. Soil testing found it had dangerously high levels of lead.

City officials took no action to inform Markey’s users or make the park safe. But parents started posting warning signs at the park and flooded City Hall with calls and emails. With Josie on her hip, Hess made an impassioned speech at a City Council meeting.

In short order, the city hired a company to test Markey and other parks and pledged to fix the lead problem wherever it was found.

“My impression was they were going to make them all lead-free parks,” Hess said.

But a Verite News investigation conducted over four months in 2025 found that lead pollution in New Orleans parks not only persists — it is more widespread than previously known. Dozens of city parks with playgrounds remain unsafe, including Markey and other parks that underwent a city-sponsored lead remediation in 2011.

The findings indicate that city officials fell short in their cleanup efforts then, and that a very large number of New Orleans children are exposed to excessive amounts of lead, said Howard Mielke, a retired Tulane University toxicologist and one of the nation’s top experts on lead contamination.

“It’s a failed program,” he said. “They didn’t do what they needed to do to bring the lead levels down in a single park.”

Verite News reporters tested hundreds of soil samples from 84 city parks with playgrounds in fall 2025. Adrienne Katner, a lead-contamination researcher with Louisiana State University, verified the results. The testing found that about half the parks had lead concentrations that exceeded the federal hazard level established in 2024 for soil in urban areas.

“If there’s evidence of kids playing in soils that are as high as you described, that’s kind of horrifying,” Gabriel Filippelli, an Indiana University biochemist who studies lead exposure, told Verite News.

Public health researchers and doctors say that children under 6 absorb lead-laden dust more easily than adults, contaminating their blood and harming the long-term development of their brains and nervous systems. There is no known safe exposure level for children, and even trace amounts can result in behavioral problems and lower cognitive abilities.

Larry Barabino is the CEO of the New Orleans Recreation Development Commission, which oversees most of the city’s parks. He said the city doesn’t routinely test for lead in parks, and he confirmed that the last significant effort to do so was in 2011.

He called Verite’s results “definitely concerning” and pledged to work with city officials, local experts, and a city environmental consultant, Materials Management Group, to potentially remediate unsafe parks.

“It’s definitely concerning if it’s at the level that’s considered a true risk or threat, and we would get it to Capital Projects immediately to get MMG out there,” Barabino said, referring to the News Orleans Capital Projects Administration. “If there’s anything that’s a true environmental concern or risk, that’s something that we believe in definitely making sure we take action.”

But New Orleans is in financial straits, with a budget deficit of about $220 million, and it’s unclear what resources new mayor Helena Moreno would be able to devote to restart lead remediation efforts. In response to the financial crisis, Moreno has already eliminated dozens of positions and plans to furlough 700 employees one day per pay period to save money. Moreno’s administration did not respond to requests for comment.

Andrea Young heard pledges similar to Barabino’s 15 years ago. Like Hess, Young had a child who frequented Markey and had high lead levels in her blood. Alongside other mothers, she helped push the city to take action. Young thought they had succeeded but said she now realizes that the city didn’t do enough.

“It makes me question the value” of the work the city did, Young said, “and the safety we felt in letting our kids play there again.”

Testing New Orleans Parks

Lead is typically found in very small amounts in natural soil. The average lead abundance in U.S. soils is 26 parts per million, equivalent to less than an ounce of lead per ton of soil.

But New Orleans, like many other cities, has a long history of lead contamination in its soil, from sources including lead-based paint, leaded gasoline, and emissions from waste incinerators and other industrial facilities. Lead particles spread easily by wind, eventually settling in the topsoil.

The federal hazard level for lead in soil was 400 ppm until early 2024, when the Environmental Protection Agency lowered it to 200 ppm for most residential areas and 100 ppm in urban areas like New Orleans with multiple sources of lead exposure. Last fall, the Trump administration eliminated the lower 100-ppm limit, arguing it was confusing to have two thresholds. It didn’t argue that the 100-ppm level was safe.

More of a guide than a mandate, the EPA screening levels can steer federal cleanup actions and are often adopted by state and city governments to inform local responses to lead contamination. California has long had a much lower standard of 80 ppm.

Mielke said the Trump administration’s change doesn’t align with the science, which has long shown that children are harmed when exposed to soil with levels below 100 ppm. He was one of several scientists who had pushed for lower thresholds after the EPA established its first screening levels more than 30 years ago.

He said the 100-ppm level should still be applied in urban areas, especially New Orleans.

Verite conducted soil tests on the 84 city parks that property inventories and maps list as having play structures. Samples were taken from surface soil, which is most likely to come into contact with children’s hands and toys or be inhaled when kicked up during play or blown by the wind.

The average soil sample collected by Verite contained lead levels of about 121 ppm. Elevated lead levels tended to follow the age of the neighborhood. The city’s older neighborhoods, including the Irish Channel and Algiers Point, had some of the highest lead levels, while places like Gentilly and New Orleans East, developed mostly after the 1950s, tended to have lower levels, according to Verite’s findings.

The highest lead levels were found at Evans Park in the Freret neighborhood. Beside a low-hanging oak branch, on ground worn bare by children’s play, Verite recorded lead at 5,998 ppm, nearly 60 times the 100-ppm urban soils threshold.

Verite spoke to more than a dozen parents at playgrounds throughout the city, and most were surprised at the levels of lead in the parks.

In the Irish Channel, Meg Potts watched her son run around the dusty Brignac playground. All of Verite’s samples at that park surpassed the threshold the EPA deemed safe for urban areas, reaching nearly 600 ppm.

Potts knew high lead levels existed in the city but said she didn’t realize her neighborhood park could be a source of exposure for her son.

“ I’m just, like, thinking about all of this now because he’s had to go in and have his lead tested,” she said. “He’s like right on the cusp of having too-high lead.”

Katner, the LSU researcher, said Verite’s results can serve as a starting point for city officials to conduct more comprehensive testing in parks, noting that even a single lead hot spot in a park is concerning.

“The kid playing in that part of the park is going to get the highest dose,” she said.

A Legacy of Lead

Before the 1970s, lead was ubiquitous. A 2022 study estimated that most of the U.S. population born before the 1980s was poisoned by dangerously high levels of lead in early childhood, resulting in an average loss of at least one IQ point.

Lead pollution from cars spread into areas near roads, especially major thoroughfares, until leaded gasoline was phased out by 1996. Similarly, emissions from trash incinerators and industrial sites contaminated the surrounding soil in some New Orleans neighborhoods until they were closed in the 1970s and ’80s.

Today, the most pervasive source of lead in soil is degraded paint. Lead-based paint was used extensively for homes and buildings until it was banned in 1978. In New Orleans, most of the houses were built before 1980, according to the 2024 American Community Survey. As the paint deteriorates, Tulane University epidemiologist Felicia Rabito said, it can chip or turn into toxic dust.

“ The leaded paint goes straight into the dust and it goes straight into the soils, which is a major source of exposure for young children in the city,” said Rabito, who studies lead poisoning and other health conditions.

Children under 6 are especially vulnerable, in part because they like to stick their hands in their mouths. A child eating a dropped Cheerio or putting their thumb in their mouth after playing on a seesaw can be enough to cause harm. Rabito recommended that parents avoid contaminated playgrounds.

The only way to know whether a child has lead poisoning is a medical test. By state law, Louisiana health care providers are required to ensure every child between 6 months and 6 years of age receives at least two blood tests, recommended at age 1 and age 2.

But the law does not include a way to enforce those testing requirements, so many health care providers don’t test, according to a 2017 report from the Louisiana Department of Health. In 2022, fewer than 1 in 10 children under 6 were screened for lead poisoning in the city, according to data from the Centers for Disease Control and Prevention.

“ There’s not anything that we can say about lead poisoning or lead levels in children in Orleans Parish with any scientific certainty,” Rabito said. “ Parents really need to get their children tested.”

Limited Soil Testing, Patchy Fixes

In 2011, the last time there was outcry over lead pollution in parks, the New Orleans health commissioner at the time, Karen DeSalvo, said the city should do “everything we can to understand what the risk might be and to remediate it.” But she also called it “not the greatest challenge, honestly,” according to The Times-Picayune.

Then-Mayor Mitch Landrieu promised a comprehensive response.

“The city will take all necessary measures to investigate possible lead contamination in other parks and playgrounds and remediate them as soon as possible,” he said in March 2011.

Two months later, testing and remediation were completed at several parks. Parents brought their children back to the reopened playgrounds.

Despite city leaders’ assurances of a broad response, only 16 parks were tested in 2011 and the city’s piecemeal cleanup covered only patches of contaminated soil rather than entire parks, according to documents obtained through public records requests.

That stunned the vocal group of parents who had pushed for cleaning up the Markey playground. Young, one of the mothers, said the scope of the 2011 testing and remediation was much more limited than she thought.

“If the majority of the parks they tested were high, what would make them think all the others are fine?” she said.

Verite’s testing found high levels of lead at several playgrounds that were remediated in 2011, including Markey.

The results disturbed Mielke, the Tulane toxicologist.

In 2010, Mielke led an effort to reduce lead exposure at 10 private child care center playgrounds in New Orleans. He and his team covered the entire footprint of each playground with water-pervious plastic fabric and then 6 inches of Mississippi River sediment from the Bonnet Carré Spillway, a source of clean, cheap, and easily accessible soil. Lead levels fell, with most playgrounds testing below 10 ppm.

In contrast, the city’s remediation was mostly limited to areas with lead levels above 400 ppm, leaving many hazardous areas exposed. Testing and remediation reports obtained by Verite typically showed MMG focused on two or three spots in each park, with the rest going untreated.

At Easton Park in Bayou St. John, for instance, the 2011 remediation covered four areas totaling about 4,700 square feet, but the park’s playground was left untouched. Verite measured four samples around the playground that exceeded the 100-ppm threshold, including 1,060-ppm and 603-ppm readings near Easton’s swing set.

One park, Evans in the Freret neighborhood, wasn’t remediated despite lead levels as high as 610 ppm in 2011. The reason wasn’t clear in progress reports submitted by MMG. In Verite’s 2025 tests, Evans recorded the highest level, with 5,998 ppm in one location.

MMG did not respond to requests for comment.

Landrieu did not respond to a request for comment. DeSalvo, who retired last summer as Google’s chief health officer, said “extremely limited resources” forced the city to weigh its response to lead contamination in parks with the many other health threats residents faced.

“We worked to address the range of exposures whenever possible with the resources we could muster,” she said.

A Road Map for Cleanup?

Filippelli, of Indiana University, said the city should conduct comprehensive testing of every park and do regular checkups.

But because lead contamination in New Orleans parks is extensive and city leaders are struggling to close a large budget deficit, Filippelli recommends that the city remediate the worst parks first.

He and Mielke don’t believe the city must go the expensive route of full remediation, which involves digging up lead-tainted soil and trucking it to a hazardous waste landfill. It’s usually unnecessary if a park is properly capped with clean soil, Filippelli said.

Verite obtained cost estimates for 10 of the 13 parks targeted for remediation in 2011. The total cost was $83,000 in 2011, or about $120,000 today. The work covered just more than 1.3 acres across the 10 properties. Filippelli estimated that similar work could be done today for about $20,000 per acre — about a fifth of what was spent to remediate just over an acre at New Orleans parks.

Remediation should be coupled with efforts to reduce contamination from nearby sources, primarily old houses shedding lead-based paint, Rabito said.

“When you clean up soil, you’re not going to do it much good if you haven’t identified what’s contaminating the soil,” she said.

Cleaning up New Orleans parks is also likely to require sustained public pressure, said the parents involved with the lead issue in 2011.

“I was not intending to kick butts or make anybody look bad,” Claudia Copeland said of her efforts to alert parents about the dangers at Markey. “But nothing would have happened unless all these parents were calling in to the city.”

Methodology

Verite News reporters Tristan Baurick and Halle Parker were trained to use an X-ray fluorescence analyzer, or XRF, a handheld device that can detect the unique traits of lead at trace levels, down to 10 parts per million. The analyzer is widely used by government and university scientists.

The reporters tested 531 soil samples over a month in late 2025, following protocols developed by retired Tulane University toxicologist Howard Mielke and vetted by three other lead-contamination researchers. The reporters tested surface soil in and around play structures and other areas of parks that children use. Of the more than 110 parks in New Orleans, Verite concentrated on the 84 that city property inventories and maps list as having play structures. The reporters took between three and 11 samples at each park, depending on the size, site accessibility, and levels of contamination. A GPS device was used to record each sample’s location.

Verite’s results were reviewed by Adrienne Katner, a lead-contamination researcher at Louisiana State University. She verified the accuracy of the testing by comparing it with a smaller set of park soil samples collected by her team last summer.

While valid, the method did have limitations. The results can’t be used to determine the state of a whole park. But even one elevated soil sample can provide a starting point for city officials to conduct more comprehensive testing.

This article was produced in collaboration with Verite News. The four-month investigation was supported by a Kozik Environmental Justice Reporting grant funded by the National Press Foundation and the National Press Club Journalism Institute. It was also produced as a project for the USC Annenberg Center for Health Journalism’s National Fellowship fund and Dennis A. Hunt Fund for Health Journalism.

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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The retiree, 70, was diagnosed with glaucoma in her right eye in 2019. She had a laser procedure to treat it in 2022, and she uses medicated drops in both eyes to prevent more damage. She is supposed to be checked regularly, she said.

During the May appointment, Tuszynski’s optometrist examined her eyes and reassured her that the glaucoma had not worsened.

Tuszynski, who lives in central Wisconsin, had looked up beforehand whether the clinic in nearby Madison participated in her insurance plan. The insurer’s website listed the optometrist’s name with a green check mark and the words “in-network.” She assumed that meant her policy would cover the appointment.

Then the bill came.

The Medical Procedure

An optometrist tested Tuszynski’s vision and took pictures of her optic nerves.

The Final Bill

$340, which included $120 for vision testing and $100 for optic nerve imaging.

The Billing Problem: Vision Coverage vs. Medical Coverage

Tuszynski’s UnitedHealthcare Medicare Advantage plan declined to pay for her eye appointment. “The member has no out of network benefits,” the company’s denial letter said.

Tuszynski felt like she was seeing double. How could an eye doctor be in-network and out-of-network at the same time? She said she sent the insurer a screenshot of its own webpage showing the clinic listed as in-network.

She said that after she complained, UnitedHealthcare representatives explained that the eye clinic was in-network under her vision plan, so her policy would cover the clinic’s services related to glasses or contact lenses. But they said the clinic was not in-network for her medical insurance plan, and glaucoma treatment is considered a medical issue.

Tuszynski was baffled that care for a patient’s eyes would not be covered by vision insurance. She said she didn’t realize that insurers can have contracts with eye clinics to provide some services but not others.

UnitedHealthcare spokesperson Meg Sergel said such arrangements are common, including with non-Medicare insurance provided by employers or purchased by individuals. “I looked up my eye doctor, and it’s the same thing,” she said in an interview with KFF Health News.

Sergel said she understood how a customer could mistakenly think vision insurance would cover all care for the eyes. She said UnitedHealthcare recommends that before undergoing treatment, patients ask care providers whether they are in-network for specific services.

Otherwise, she said, to know whether a test or treatment is covered by vision insurance, “you’d have to read the nitty-gritty” of a policy.

Leaders at Steinhauer Family Eye Clinic, where Tuszynski saw the optometrist, declined to comment.

Casey Schwarz, senior counsel for education and federal policy at the nonprofit Medicare Rights Center, said such complications frequently come up when Medicare Advantage members try to use their insurance at eye clinics or dental offices.

The federal government pays insurers to run Medicare Advantage plans for people who choose them instead of traditional Medicare. More than half of Medicare beneficiaries sign up for the private plans. Many offer routine vision and dental coverage that isn’t included with traditional Medicare.

“We hear from people who choose these plans because of those supplemental benefits, but there is not a lot of transparency around them,” Schwarz said.

The Resolution

After receiving the rejection letter, Tuszynski repeatedly contacted UnitedHealthcare to question the decision and filed an appeal with the company. Then, she said, she called a Medicare hotline to complain to federal officials. She also wrote to KFF Health News, which asked the insurer about the case.

UnitedHealthcare eventually agreed to cover the bill as if the service had been in-network. “In good faith, we made an exception,” Sergel said. However, Tuszynski was warned that if she received medical care from the clinic again, it would not be covered, because the clinic remains out-of-network for such services, Sergel said. “It doesn’t sound like that pleased her.”

Tuszynski confirmed that she is not pleased.

She said she lost sleep over the dispute and felt that it shouldn’t have taken so much effort to obtain a fair outcome. “It’s just been a horrible, difficult whirlwind,” she said.

The Takeaway

Schwarz said regulators should require insurance companies to clearly explain to customers and care providers how different procedures and services will be covered under vision, dental, and health plans. “They’re tricky,” she said.

In an ideal world, Schwarz said, Medicare would consider things like dental cleanings, eye checkups, and hearing aids as basic health care that would be covered in the same way as other medical care. But until that happens, she said, patients with any doubt should call their insurers beforehand to check whether services will be covered.

Tricia Neuman, a senior vice president with KFF, a health information nonprofit that includes KFF Health News, noted that Medicare’s website now includes a tool that can help people determine whether their doctors participate in a Medicare Advantage plan.

“This is helpful and a step forward, but information about provider networks is not always correct,” Neuman said. “Errors can come at a cost to enrollees, unless they are willing and able to take on their insurer.”

Tuszynski worked for 30 years as a secretary in hospitals and at doctors’ offices, so she’s familiar with billing issues, she said. “If I can’t sort through all this, how can anybody else do it?”

She knows her $340 bill was much smaller than the medical debts many other people face. But she said it was a serious amount of money to her, and she was glad she objected to the insurer’s contention that the bill shouldn’t be covered.

“I have a strong feeling about right and wrong — and this is just wrong,” she said.

For 2026, she decided to shift out of her Medicare Advantage plan. She now is enrolled in traditional Medicare, plus a supplemental plan to help with copays and other costs. She pays $184 a month for that plan, compared with paying no separate premium for her old Medicare Advantage plan.

Now she won’t have to worry about private insurers’ limited networks of contracted care providers, she said. Her glaucoma treatment will be covered at the Madison eye clinic.

However, she no longer has insurance coverage for eyeglasses, just a discount plan if she buys glasses from certain stores. She used her Medicare Advantage insurance to buy new glasses shortly before switching. “Hopefully, those will last me a while,” she said.

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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Bostic learned of a federal program designed to help people who suffer rare vaccine reactions.

The Vaccine Injury Compensation Program was created in 1986 after a flood of vaccine injury lawsuits drove drugmakers from the market. Congress aimed to offer a faster and more generous path to compensation for people injured by vaccines, while shielding manufacturers from liability. The VICP, commonly known as vaccine court, is taxpayer-funded. The government pays any award to claimants as well as attorneys fees.

Bostic filed a claim in 2022 for compensation to cover her son’s spiraling medical bills. She then contacted the Carlson Law Firm, which referred her to Arizona-based attorney Andrew Downing — who now serves as a senior adviser to Health and Human Services Secretary Robert F. Kennedy Jr.

Downing declined to comment and HHS did not respond to requests for comment for this article.

Downing, who has represented hundreds of plaintiffs in vaccine court in Washington, D.C., signed on to take their case, according to a contract reviewed by KFF Health News. They agreed Downing would pursue the claim before the VICP.

Bostic shared documents and medical records as he requested them. Months passed as she waited for news on her son’s case.

After several months of making court filings, Downing told her it was time to opt out of the vaccine program and sue the drugmaker. When she refused to opt out, he withdrew from the case.

The government paid Downing $445 an hour for representing Bostic, which is typical for program attorneys with his experience, according to court records.

Three years later, Bostic said, she hasn’t received a dime for her son’s injury. Thomas, now 18, endures debilitating pain that doctors say may never go away.

Rather than help them work through the program, Bostic feels that Downing steered them away from it and toward a lawsuit against the manufacturer. The VICP ultimately dismissed her case.

Bostic was furious that the court paid Downing anything.

“Y’all could’ve gave that to me for my son,” she said. “How dare y’all.”

In Business With Washington

In June, Kennedy’s HHS also awarded Downing’s law firm, Brueckner Spitler Shelts, a sole-source federal contract to consult on an overhaul of the VICP. The contract has grown to $410,000. Downing is the only attorney listed on the firm’s website who has practiced in vaccine court.

Kennedy has routinely questioned vaccine safety and called the VICP “broken,” saying it shields drug companies from some liability “no matter how negligent they are.” As a personal injury lawyer, Kennedy previously spearheaded civil litigation against vaccine maker Merck.

Downing and about a dozen other lawyers have transferred hundreds of clients from the vaccine program to civil suits, where the financial rewards — for patients and their lawyers — could run far higher, according to a KFF Health News analysis of court records and program data. They’ve collected millions of taxpayer dollars in attorneys fees from vaccine court while launching precisely what it was designed to avoid: lawsuits against vaccine manufacturers.

This shift in legal strategy has fueled Kennedy’s crusade against Merck, and it could end up hurting some vaccine-injured clients, several experts said.

University of California Law-San Francisco professor Dorit Reiss has studied vaccine court for over a decade and has tracked the rise of anti-vaccine forces in American politics. She said VICP attorneys who are also suing vaccine makers have “incentives to direct more people” to lawsuits, “when it might not be in their best interest.”

A Delicate Balance

Kennedy has criticized the VICP as a barrier to accountability. But for Bostic, vaccine court offered an opportunity to hold the government to its promise of caring for casualties of widespread immunization.

Like any medication, vaccines can have side effects. Serious reactions to routine shots are rare, but for the unlucky few who bear this burden, the government promises recourse through its administrative program.

Vaccine court aims to strike a balance between protecting public health and helping individuals who may pay its price. The no-fault program allows claimants with vaccine-related injuries to get help without showing that the vaccine maker did anything wrong, even when the evidence doesn’t meet courtroom standards.

The program has made more than 12,500 awards, totaling roughly $5 billion in compensation. Historically, nearly half of claims have been resolved with some kind of award.

If patients aren’t satisfied with the outcome or don’t get a ruling within 240 days, they may leave the administrative program and sue the vaccine maker in civil court. Plaintiffs could potentially win larger awards. Lawyers could obtain higher fees, which they can’t in vaccine court.

But winning a civil suit is far more difficult, in part because plaintiffs have a greater burden of showing the vaccine caused their injury and that the maker was at fault. Since the VICP was created, no vaccine injury lawsuit has won a judgment in regular court, records show.

That hasn’t stopped some lawyers from trying. After the requisite 240 days, they have transferred hundreds of VICP claims into civil litigation against HPV vaccine manufacturer Merck, the KFF Health News analysis found.

The lawyers who represented those claims include Downing and other VICP attorneys with ties to Kennedy, court records show. Those include Kennedy advisers and people who work in the law office of his longtime personal lawyer Aaron Siri or with Children’s Health Defense, the anti-vaccine outfit Kennedy founded, as well as a former Kennedy co-counsel in suits against Merck over its HPV vaccine, Gardasil.

Downing, whose law firm biography describes him as “one of the preeminent litigation attorneys in the Court of Federal Claims,” has not won an HPV vaccine injury claim in the past five years, records show. Vaccine court did compensate dozens of HPV vaccine claims in that time, but most — including nearly all of Downing’s — were withdrawn upon reaching the opt-out period.

VICP data and court records show that over the past five years, Downing and other lawyers withdrew roughly 400 Gardasil claims from vaccine court before a ruling was issued. The plaintiffs received nothing from the program. Hundreds of these cases joined the litigation against Merck, according to court records.

Once the opt-out period arrived in Bostic’s case, Downing informed her that he was preparing to withdraw her son’s claim and move the case back to the original law firm for a lawsuit against Merck.

“That,” he wrote in an email, “was the plan all along.”

Fighting for Compensation

Thomas, who hopes to enroll in community college and become a computer programmer, has intermittent numbness in his fingers and stabbing sensations in his arm nearly every day. The pain often radiates across his back or up his neck, and he’s developed migraines. Once an active kid who dreamed of playing basketball professionally, he now spends his time playing video games and trying to sleep during lulls in his pain.

Bostic’s claim on behalf of her son made him one of about 1,000 people who have filed with vaccine court for HPV vaccine injuries. More than 200 have received compensation — just over one for every million shots given. Court records show program awards were typically $50,000 to $100,000, with some also covering past medical bills or future health care expenses.

Richard Hughes IV, a health care attorney and former pharmaceutical executive who teaches vaccine law at George Washington University Law School, reviewed Thomas’ records and said cases like his were exactly what the vaccine program was designed to address.

“That just seems straightforward,” Hughes said of Thomas’ claim. “That should have gotten compensated.”

Bostic wanted the federal agencies that had approved and recommended Gardasil to answer for her son’s injuries. The single mother hoped compensation from the program would allow Thomas to see specialists including neurologists, afford natural treatments, and enroll in physical therapy.

“He would have had the best of the best health care,” she said.

When Downing took their case, Bostic said, he told her during a phone call that vaccine court’s $250,000 limit on pain and suffering was too low for her son’s injury. Bostic said Downing advised she could get more money by suing Merck, though that could take longer.

“I said, ‘No, that will take years. My son needs help now,’” Bostic recalled.

Bostic said she told Downing she wanted a fund set up for Thomas’ health care as soon as possible.

In the following weeks, Bostic sent paperwork to Downing’s office but had difficulty getting in touch with him, email and text messages show. Downing’s billing records show a gap in his work on the case from late September until mid-November.

In November 2022, Downing emailed Bostic, “The opt out date for K.T.’s case is set for April 23, 2023. At that point, we will be in a position to opt K.T.’s case out of the Vaccine Program and move the case back over to the Carlson Law Firm for handling in the Merck litigation.”

Bostic said she was confused at the time by that language. But she remembers being emphatic in a follow-up phone call with Downing, repeatedly telling him she would not opt out.

After that, Bostic said, she didn’t hear from Downing for months despite calling his office and leaving messages with secretaries.

Downing’s billing records show that he and his paralegals spent fewer than nine hours on Bostic’s case in that stretch. This included time spent requesting, reviewing, and filing medical records, as well as drafting and filing extension requests. The billing records did not include any communication with Bostic during that time.

The court granted each of Downing’s extension requests, pushing back the deadline a month at a time.

In April 2023, Downing sent Bostic an email noting that 240 days had passed, so he could drop their government claim and they could sue Merck.

“Gardasil cases do not receive very fair treatment in the Vaccine Program,” Downing wrote, adding that he would withdraw as her attorney if Bostic stayed in the program.

Bostic chose to stick with vaccine court, later telling the vaccine court judge by email that she’d advised her attorney “I was not trying to become a millionaire.”

That exchange of emails in April is when Bostic said she learned Downing was already representing plaintiffs in lawsuits over Gardasil. The litigation encompassed hundreds of other patients who — most of them under Downing’s counsel — had filed VICP claims in recent years.

Running out the 240-day clock, critics say, is allowed but subverts the program’s intent.

Some legal experts criticize the way Downing handled Bostic’s case.

“They trusted him to file the VICP case,” Reiss said. “It’s his job to zealously advocate for his clients. In this case, his clients want to go through VICP. It’s his job to fight for them in VICP, not to wait for 240 days.”

When Downing joined HHS as a senior adviser to Kennedy, court records show, he handed off his remaining vaccine court cases to other attorneys in firms involved in the litigation against Merck.

A New Approach

The vaccine program has long faced criticism for giving claimants too little, too late. Even VICP advocates see the need for reform, with eight officials deciding a growing backlog of claims, driving up wait times. The cap on pain and suffering payments has not changed since 1986. But the court can award further compensation like a fund for lifetime medical care that can reach millions.

Most vaccine-injured individuals are better off in the administrative program than in civil litigation, legal experts said.

Renée Gentry, director of GWU’s Vaccine Injury Litigation Clinic and a founding member of the Vaccine Injured Petitioners Bar Association, has represented hundreds of families alleging vaccine injuries. Most of them, she said, aren’t focused on big payouts; rather, they “want their kid taken care of or they want to be taken care of.”

For claims that often fail in vaccine court, however, Gentry said a lawsuit may be the best option. According to Gentry, HPV vaccine claims like Thomas’ are particularly challenging to win in the VICP.

“If you’re not going to win, then you want those clients to have at least an opportunity at something,” she said.

For Mark Sadaka, a prominent vaccine court lawyer representing some claims in Merck litigation, sending clients to regular court is a last resort.

Sadaka said certain Gardasil injury claimants, such as those alleging mental rather than physical harm, might be better off in litigation. But by sticking it out in the VICP, Sadaka has won HPV vaccine injury claims that were the first of their kind, including for narcolepsy, alopecia, and even a deadly arrhythmia.

“He’s going to get taken care of for the rest of his life,” Sadaka said of his client who won compensation for narcolepsy in 2023. “And he doesn’t have to pay me anything.”

Sadaka, like all program lawyers, gets an hourly rate from the VICP. He said that he could make much more money representing the same claims in traditional litigation, since he could get a cut of any awards.

“It’s a better thing for me to file in regular court and get a higher fee, but for the client, sometimes it makes sense, sometimes it doesn’t,” Sadaka said. “My role is to explain both sides in gross detail for them and give them as much information as possible so they can make an informed decision.”

According to Sadaka, some lawyers in the VICP automatically advise their clients to leave vaccine court and file a lawsuit.

“If they can extract settlements, they’re going to be very happy to put that money in their pockets,” Hughes noted.

Winning a lawsuit or reaching a major settlement could also spell trouble for nationwide vaccine access, replaying the events that gave rise to vaccine court in the 1980s.

Some vaccine lawyers and policymakers believe Kennedy and his colleagues might welcome a return to those days.

“If they can bring down the system, that’s a feather in their cap,” Hughes said.

Lawyers cannot win contingency fees in vaccine court. They get paid for time spent on reasonable claims whether they win or lose. Downing made more than $1 million representing clients before the VICP in recent years, according to court records.

A January VICP report shows that since fiscal year 2020, the program has paid scores of attorneys about $280 million — including over $43 million for cases they did not win.

In each of the last two fiscal years, lawyers got roughly $9 million for VICP claims in which their clients got nothing. That was more than the program had ever previously paid to attorneys for unsuccessful claims, according to vaccine court data.

‘Learning How To Cope’

After discovering her attorney would not pursue VICP compensation for her son, Bostic decided to advocate for Thomas herself.

“Please help me,” she wrote in a letter to the court.

VICP staff gave Bostic extra time to find a new lawyer and gather records.

The following months proved difficult for the family. Bostic was hospitalized with a life-threatening condition. Her mother’s health declined. She was laid off and lost her family’s health insurance.

By the time Bostic could take Thomas to a pediatric neurologist to get medical records for his VICP case, she said, the doctor had moved hours away to Orlando.

Bostic repeatedly missed deadlines and failed to communicate with program staff as required, court records show. Emails, docket entries, and letters suggest she may have misunderstood some court orders and not received others.

When Thomas’ medical records remained incomplete for another year, the presiding official dismissed Bostic’s claim, writing that while he had sympathy for what she and her son had endured, “the case cannot be allowed to remain pending indefinitely.”

Thomas said he can no longer play basketball with friends. He can’t even help his mother carry groceries into the house.

“I got to live with this, and there’s pain,” he said.

Bostic now works from home as a bank fraud analyst. With an income just above the cutoff for government assistance, she puts in overtime in hopes of affording health insurance for Thomas and her six other children.

“People are asking, ‘How’s your son doing?’” Bostic said. “I normally say, ‘Still the same. We just learning how to cope with it.’”

Methodology

The KFF Health News analysis began with court records for cases in the U.S. Court of Federal Claims, which includes vaccine court. We first identified all cases since 2006 (when the HPV vaccine was introduced) in which the “nature of suit” field explicitly mentioned human papillomavirus, or in which “nature of suit” was categorized as “other” vaccine injury/death and the case text included the word “papillomavirus.” The latter made up about 10% of identified cases, mostly claims filed before the HPV vaccine was added to the program or claims involving multiple vaccines. We cross-referenced the number of cases with data from VICP reports to verify completeness.

After identifying the relevant vaccine court cases, we pulled these claims’ filing and closing dates and took the difference to find the number of days that each case spent in vaccine court. To estimate total attorneys fees awarded for these claims, we added the fee amounts recorded in dozens of the VICP rulings and derived a minimum estimate based on the number of such cases.

We then searched federal court records for litigation over Merck’s HPV vaccine, Gardasil, and pulled the names of the plaintiffs and attorneys involved. To gauge the scale of claims diverted from the VICP to litigation, we searched for each attorney in the Gardasil-related vaccine court cases and searched for the last name of each plaintiff in the titles of those cases.

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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The nurse who took the call at the Sono Bello center in Addison, Texas, told her she “absolutely should not” go to the ER — even though Farris “had a large gush of foul fluid” leaking from the incision, according to records in the malpractice case she filed against the cosmetic surgery chain in 2024.

The nurse told Farris she “only needed to reinforce her dressing to collect the fluid drainage and give it time,” filings in the lawsuit alleged.

“Thankfully, Ms. Farris did go to the ER where she was diagnosed with sepsis from her surgery complications,” a medical expert for her legal team wrote in a court filing. Left untreated, sepsis can lead to death.

Sono Bello officials declined to discuss malpractice cases filed against the company, citing patient privacy laws. But in court filings, the company has disputed Farris’ claims. The case is set for trial early next year.

The Farris lawsuit is one of dozens of medical malpractice cases filed over the past three years that accuse cosmetic surgery chains of failing to provide adequate care for patients in the days and weeks after their procedures — in many cases by allegedly neglecting to promptly treat painful infections and other serious complications — including for four patients who died, a KFF Health News investigation found.

In some cases, patients who traveled hundreds of miles or more for seemingly routine surgeries allegedly suffered painful complications while recuperating in hotel rooms or unlicensed “recovery homes,” which they said lacked adequate medical staff and supervision, according to court filings.

While complications, such as infections, can occur after any surgical procedure, problems related to postoperative care are blamed for contributing to injuries in over two-thirds of the cosmetic surgery cases KFF Health News reviewed.

The surgery companies involved — some, like Sono Bello, financed by private equity investors — offer elective procedures such as liposuction and “Mommy Makeovers” to patients who pay thousands of dollars out-of-pocket or on credit. Ads promise life-changing body reshaping techniques with minimal risk and quick recovery times.

Medical malpractice lawsuits have trailed behind the growth of these companies. Suits have accused the chains of hiring doctors who lacked adequate training or had troubled pasts, and of using high-pressure sales tactics and misleading advertising pitches that downplay safety risks, court records show. The companies dispute these allegations and have won dismissal of some suits.

Patrick Schaner, a plastic surgeon and a Sono Bello medical director, stressed that the company has performed more than 300,000 cosmetic operations with minimal complications. “That context is very important,” he said in an interview.

Schaner said Sono Bello surgeons are “good at what they do” because of the large numbers of procedures they perform. “We do a great job of getting safety protocols in place,” he said.

Many patients who file lawsuits blame disfiguring injuries on what happened after their operations, such as office visits in which medical staff allegedly didn’t recognize, or dismissed, evidence of worsening surgical complications, court records show.

A nurse at a Sono Bello center outside Chicago allegedly failed to alert doctors when Mary Anne Garcia, a patient who had had liposuction at the center about three weeks earlier, showed up there with her aunt. Garcia was dizzy and so weak she required a wheelchair to get back to the car, according to a lawsuit her estate filed in September.

Rather than tell Garcia to go to an emergency room, the Sono Bello nurse told her to “drink more fluids and try to eat something,” according to the complaint.

Garcia died the next day from cardiac arrest, according to the lawsuit. Sono Bello has yet to file a response to the lawsuit in court.

‘It Was Horrifying’

Susan Easley, 59, a veteran U.S. Agency for International Development executive who spent two decades working on AIDS projects in Africa, died in a Washington, D.C., short-term apartment last year.

Her son Gavin found her body May 13, 2024, four days after she had an AirSculpt liposuction and fat transfer operation at Elite Body Sculpture in nearby Vienna, Virginia, according to a lawsuit filed in November.

“It was horrifying,” Gavin Easley told KFF Health News in an interview. “My mother was the definition of kind, caring, and unconditionally loving. She was the most incredible woman I’ve ever known,” said Easley, 29, who runs an organic farm in Arkansas with his wife.

The suit alleges that surgeon Dare Ajibade gave Easley an excessive amount of the anesthetic lidocaine during the 6½-hour procedure and failed to recognize persistent vomiting afterward as a sign of toxicity. She called the clinic to report her condition, but her concerns were dismissed, the suit alleges.

“When she called to report complications, they didn’t take it seriously,” said Virginia attorney Peter Anderson, who filed the suit. He said Easley presented “clear signs and symptoms” of problems.

AirSculpt is a brand of Elite Body Sculpture, a Miami Beach-based chain founded by cosmetic surgeon Aaron Rollins. The company, which is financed by private equity investors, has about 30 branches across the country. Neither the company nor Rollins responded to repeated requests for comment on patient lawsuits. In court filings, the company has denied the allegations.

Ajibade has since relocated to Texas, where he works for Sono Bello in San Antonio, according to the company. Neither the surgeon nor the Virginia surgery office, which is also a defendant in the case, returned calls for comment. The defendants have yet to file an answer in court.

A Booming Business

Sono Bello, with more than 100 centers nationwide, bills itself as “America’s #1 Cosmetic Surgery Specialist.”

Patients filed seven malpractice cases against Sono Bello in September — each in a different state. In an interview, Marcy Norwood Lynch, a Sono Bello executive vice president and chief legal officer, speculated that the spurt in cases was related to reporting by KFF Health News and NBC News about the company. There “could be alignment” between the coverage and the filing of the suits, she said. The company has denied the allegations in court.

KFF Health News reviewed a sample of more than 100 medical malpractice cases filed against multistate surgery chains from the start of February 2023 through November 2025. Malpractice suits do not by themselves prove substandard care, though many medical authorities and licensing boards consider them a tool for helping to judge medical quality.

Heather Faulkner, a plastic surgeon and associate professor at Emory University School of Medicine in Atlanta, said surgeons must quickly recognize signs of infection before they progress and become serious, even life-threatening conditions.

At Emory, she said, surgeons must attend their patients’ first visit after cosmetic surgery. “Ultimately, the physician is the one responsible,” she said. “The patient has to be seen by the person who did the operation and knows how to recognize something is wrong,” Faulkner said in an interview.

Patients suing cosmetic surgery chains often argue that they were seen by nurses or other staff members who, they allege, lacked the training to recognize and deal with problems before they required emergency wound care.

Schaner, the Sono Bello medical director, said the company has a phone messaging system that ensures patients can get in touch with their surgeon or other company physicians. While nurses see some patients, the “ultimate decision-making is passed to the surgeon,” he said.

Five patients treated at Sono Bello centers who sued the company during 2025 alleged that surgical wound complications were dismissed after medical staff, including surgeons, viewed pictures of the injuries, court records show. The cases are pending.

Schaner said Sono Bello sometimes has patients submit photos of wounds but the images are “not the sole means of triage” of patient injuries or complications.

Joshua Kiernan sued Sono Bello after having liposuction on May 28, 2024, at the branch in Columbia, South Carolina. On June 8, 2024, he stumbled and fell in a gym parking lot, causing drainage around the incision in his stomach, according to the suit. On June 17, 2024, Kiernan visited the office complaining of “redness and pain” around the incision, according to his suit.

The surgeon, Stancie Rhodes, didn’t examine him in person but had an office staff member take a picture “so that she could view it from another part of the office,” according to the complaint.

The surgeon sent back word that the photo “looked fine,” and Kiernan was told to take Tylenol for the pain and follow up at the office a week later, the complaint alleged.

Two days before his appointment, Kiernan required emergency hospital treatment for “abdominal hematoma and infection,” according to the suit.

Kiernan underwent six surgical procedures and ran up medical bills of more than $325,000 to treat his condition, according to the suit. In court filings, Sono Bello denied the allegations.

“Surgical care does not end at the last stitch,” said Mark Domanski, a plastic surgeon in Virginia, who believes the chain clinics in general are more adept at marketing than providing patients with top-notch care. “It involves postoperative visits with the surgeon who did the procedure, who is there to respond to the patient’s concerns, questions, especially if things are not going well,” he said.

Recovery Houses

Many patients who travel for cosmetic surgery, either to save money or because services aren’t available in their area, can’t return home right away.

Yet there’s little agreement on where patients should recuperate, for how long, and what medical services should be readily available to them.

Scott Hollenbeck, immediate past president of the American Society of Plastic Surgeons, said laws or regulations in most states don’t spell out requirements.

“This can create a wide variation of oversight, staff qualifications, and available medical support,” he said.

The plastic surgery society has warned against a cottage industry of recovery houses that often charge patients hundreds of dollars a night while they recuperate, even though they may lack medical staff capable of handling possible surgical complications.

Court filings in Florida show patients staying in recovery houses and hotels have died or suffered untreated complications, mostly in South Florida, where officials have struggled for a decade or more to regulate unlicensed facilities. One local lawmaker recently filed a bill to rein them in.

Hollenbeck said patients who recuperate in a hotel or other facility need to find out in advance what “level of care” will be available. He said ads touting “luxury” accommodations or “conveniently located” do not make a hotel “clinically qualified to provide recovery care.”

Easley, whose mother died in Washington, D.C., said he is struggling to understand what happened after a medical transportation service took her from the Virginia surgery center to a temporary apartment.

He said his mother, who was born in a small village in Uganda before emigrating to the U.S. as a teen and joining the U.S. Army, “had so many plans” for the future.

Susan Easley had been medically cleared for a new assignment in Africa. After that, she planned to retire and start a farm in Tanzania, among other things, according to her son.

The lawsuit alleges the surgery center discharged her prematurely given signs of a dangerous condition called local anesthetic systemic toxicity caused by an overdose of lidocaine.

Susan Easley called the surgery center that day and reported “multiple instances of nausea and vomiting,” but there’s “no evidence” that anyone told her to head to an emergency room, according to the suit.

“I don’t know what they said to her,” Gavin Easley said. “It’s a horrifying thought for me. I have no idea how to get to the bottom of that mystery.”

‘Preventable Death’

Some lawsuits take aim at decisions made by support staff members, who help monitor patients after surgery.

That’s a critical issue in the case of Mary Anne Garcia, the Illinois woman who died after her aunt drove her to the Sono Bello office in Oakbrook Terrace, Illinois, on June 4, 2024.

Garcia “was feeling sluggish, dizzy, and nauseated,” according to the suit. She also had a rapid heartbeat and low blood pressure, according to the complaint. But registered nurse Lucia Raddatz did not notify the surgeon or urge Garcia to seek emergency care even though Raddatz had to help her back to the car in a wheelchair due to Garcia’s “severely weakened condition,” according to the suit.

Filed on behalf of Garcia’s estate, the suit names Raddatz and Sono Bello as defendants. An emergency room physician hired as an expert in the case opined that had Garcia gone to the emergency room on June 4, “she would have received care which would have avoided her death,” court records state. Sono Bello had no comment and has yet to file an answer in court.

Established plastic surgeons say they are often called upon to treat patients who arrive in the emergency room with complications because surgeons working for the chains may lack local hospital privileges or are otherwise not available for consultations.

“There is not one colleague of mine who has not dealt with the complications of these types of facilities or med spas on more than one occasion,” said Charles Pierce, president-elect of the New Jersey Society of Plastic Surgeons.

‘Angry and Betrayed’

Doctors at an Austin, Texas, hospital expressed such frustration while caring for Anna Palko, a 33-year-old mother of four, according to a malpractice suit she filed in November against surgeon Rambod Charepoo and his employer, Mia Aesthetics. The Miami-based cosmetic surgery company, which operates in about a dozen cities, including Austin, advertises that it delivers the highest quality of plastic surgery at affordable prices.

A doctor at St. David’s Medical Center in Austin wrote in Palko’s medical record: “Unfortunately patient has had postoperative complications from a physician who is well-known to our emergency department for similar post-op complications associated with cosmetic surgery through MIA (sic) Aesthetics,” according to the suit.

Palko is one of five Texas women who sued Charepoo and Mia Aesthetics for malpractice this year, between mid-July and the end of November, court records show.

Four women allege the surgeon and the company failed to adequately treat infections that developed after surgery, while the fifth alleged other complications. Mia Aesthetics was dismissed from one case. The surgeon and the company have denied the allegations in court filings, court records show.

Charepoo also has been the subject of a lengthy investigation by the Texas Medical Board, which licenses doctors.

In August 2021, the board alleged that the surgeon “failed to meet the standards of care” in treating six patients, including one he placed “at risk” by allowing the patient to leave the surgery center for the emergency room in a private vehicle after the person “experienced significant hypotension and hemorrhagic shock.”

In October 2024, the medical board found that Charepoo had failed to meet standards of care for five of the six patients. The board required him to have a surgical proctor oversee 20 of his operations per quarter for two years. The board also ordered him to take medical education courses, pass an exam, and pay a fine of $4,000.

Charepoo is fighting the order in court. Charepoo, Mia Aesthetics, and lawyers representing Charepoo and the company did not respond to requests for comment.

In January, he sued the Texas Medical Board, arguing the penalty is “both excessive and unjustified” and should be invalidated. The medical board declined to comment on the suit, which is pending in Travis County District Court.

Hearing of the surgeon’s problems came as a shock to patient Palko, who said she had chosen Mia Aesthetics because of ads promising high-quality doctors.

“I felt so disgusted, angry, and betrayed,” Palko said in an email sent through her attorney.

Have you had liposuction, a “Mommy Makeover,” a tummy tuck, a Brazilian butt lift, or another type of cosmetic surgery? We’d like to hear about your experience. Click here to contact our reporting team.

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Genesis HealthCare, once the nation’s largest nursing home chain, filed for Chapter 11 reorganization bankruptcy in July with a proposal to protect its controlling investor, Joel Landau, from legal liability. In court papers, Genesis had originally estimated all its settled and pending cases — which it said numbered nearly a thousand — would cost $259 million to resolve.

KFF Health News reported this month that in the years before filing for bankruptcy, Genesis had settled at least 155 patient injury and death lawsuits with provisions that allowed it to delay paying, sometimes for more than a year. As a result, when Genesis filed for bankruptcy in July, it still owed $41 million out of the $58 million promised in those settlements with families of current or former residents, according to the bankruptcy and case records KFF Health News reviewed.

In hearings Wednesday and last week in U.S. Bankruptcy Court in Dallas, Judge Stacey G.C. Jernigan said she would not approve a sale of the company’s assets that included legal releases from liability for Landau and a private equity associate, David Gefner. Landau, who was seeking to purchase the assets through another company he controlled, did not attend the bankruptcy hearings or respond to a subpoena, lawyers said in court.

“I’m very encouraged that someone is watching and paying attention to this,” said Erin Pearson, whose father, James Sanderson, died in 2018 after spending less than a month in a Genesis facility in Albuquerque. “And the guy who owns the most shares, not only did he not show up but doesn’t just get to move things around and rebuy” the nursing homes.

According to Pearson’s lawsuit, filed in 2019, Sanderson developed a bowel obstruction and sepsis while at the facility but was not sent to the hospital for more than a week.

Genesis did not pay Pearson the $500,000 it agreed to in a settlement, according to Pearson’s claim filed in bankruptcy court. “I don’t know if I’ll ever see that settlement, but I would like to be hopeful,” Pearson said in an interview Dec. 17.

Genesis, Landau, Gefner, and their attorneys did not immediately respond to requests for comment. In a public statement last week, David Harrington, the executive chairman of Genesis’ board of directors, praised Landau and his company’s investment in Genesis for helping it avoid bankruptcy in 2021. That “lifeline,” he said, enabled Genesis to transform into a “nimble, market-based model dedicated to prioritizing resident and patient care.”

Ian Norris, who represents 19 clients with lawsuits against Genesis — including four who have not been paid their settlements — said the judge’s ruling was “a huge win for all those who were confronting the possibility that they would not be able to recover the settlements that were promised to them by Genesis prior to the bankruptcy.”

According to Genesis’ bankruptcy filings, the company owes more than $1.6 billion in unpaid claims that are not secured by liens, including claims not only from former residents and their families but also from a pension fund; contractors that provided health services and equipment; and Pennsylvania, New Mexico, and West Virginia, which are owed provider taxes. Daniel Simon, a lawyer representing Genesis’ owners, said in court on Dec. 17 that $155 million would be available from the proceeds of the sale for these creditors under a bid for the nursing home assets from a new company controlled by Landau and Gefner.

Genesis last month held an auction for its assets and announced that Landau’s bid was the best, but the U.S. Trustee’s Office and creditors objected, saying Genesis had unfairly excluded one group from bidding and downplayed the value of another group’s bid that would have provided more money to creditors. Jernigan said there were too many irregularities in the auction for her to approve it and ordered it be redone under the watch of the U.S. Trustee’s Office.

“I am aware that there is huge concern about Mr. Landau, and he is not here,” Jernigan said last week. “There is no way I can approve these releases without him on the witness stand and me being convinced of his good faith.”

Sen. Elizabeth Warren (D-Mass.), who along with two Senate colleagues filed an amicus brief questioning the fairness of the auction, said in a media statement: “A private equity company tried to abuse the bankruptcy system to slither out of paying what they owe to neglected seniors in its nursing homes. This is a textbook case of why we need to get private equity out of health care altogether, and this decision is a good step forward in the fight to deliver relief for the victims of Genesis.”

In the Dec. 17 hearing, representatives of the company controlled by Landau and Gefner said they would bid again for the remains of Genesis without the promise of liability releases. The auction is expected to occur in January. Simon, the lawyer for Genesis, said at the hearing that the judge’s ruling “has humbled us.”

Lawyers for former and current Genesis residents said they hope to sue Landau and other parties that controlled the company and led it into bankruptcy. John Anthony, a Tampa attorney who represents 341 claimants, said, “The victims believe that Mr. Landau richly deserves his day in court, so he can explain to a jury of his peers how he has apparently gotten so rich running all these supposedly insolvent facilities into the ground.”

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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The April wind was chilly at one of the tribes’ highest vistas in remote southeastern Idaho.

“Our goal is to bring fiber out here,” Goli said, sweeping one hand across the horizon. The landscape below is scattered with homes, bordered in the east by snowcapped mountain peaks and to the west by “The Bottoms,” where tribal bison graze along the Snake River.

In between, on any given day, a cancer patient drives to the reservation’s casino to call doctors. A young mother asks one child not to play video games so another can do homework. Tribal field nurses update charts in paper notebooks at patients’ homes, then drive back to the clinic to pull up records, send orders, or check prescriptions.

Three years ago, the Shoshone-Bannock Tribes were awarded more than $22 million during the first round of the federal Tribal Broadband Connectivity Program. But tribes that were awarded millions in a second round of funding saw their payments held up under the Trump administration. Last month, federal leaders announced modifications to tribal broadband programs as part of a larger effort to “reduce red tape.” The National Telecommunications and Information Administration said it plans to “promote flexibility” and launch a new grant in the spring.

Federal regulators declined to provide details. The announcement comes after a year of upheaval for federal broadband programs, including the elimination of Digital Equity Act funding, which President Donald Trump has called “racist,” and a restructured $42 billion Broadband, Equity, Access, and Deployment program, which U.S. Commerce Secretary Howard Lutnick said was influenced by “woke mandates.”

Across Indian Country and on the Fort Hall Reservation, high-speed internet service gaps persist despite billions set aside for tribes. In early November, U.S. Sens. Maria Cantwell (D-Wash.) and Brian Schatz (D-Hawaii) asked federal agency leaders why funds already awarded had not been released to tribes and whether federal regulators were providing adequate technical assistance.

So far, the $3 billion tribal program has announced $2.24 billion in awards for 275 projects nationwide. But tribes that won awards have drawn down only about $500 million, according to a recent update from the Commerce Department’s Office of Inspector General.

The agency has initiated tribal consultation on the broadband programs, offering tribal leaders two dates in January for online meetings.

The Shoshone-Bannock Tribes have drawn down less than 2% of their awarded funding and the program has not yet connected a single household, Goli said. NTIA spokesperson Stephen Yusko said the Shoshone-Bannock Tribes are still slated to get their full grant award and, he confirmed, future spending will not be subject to the administration’s recalibrations.

Gaps in high-speed internet can be profound and urgent on tribal lands. Tribal members are historically underserved and, on average, live with the highest rates of chronic illnesses and die 6.5 years earlier than the average U.S. resident.

Diabetes and high suicide rates are among the most pernicious tribal health challenges — and federal research confirms telehealth can improve health outcomes. A KFF Health News analysis showed that people tend to live sicker and die younger in America when they live in dead zones, or places where poor internet access intersects with shortages of health care providers, leaving patients who need it most unable to use telehealth.

“We’re in survival mode,” said Nancy Eschief Murillo, a longtime Shoshone-Bannock leader. The tribes, which have an on-site clinic, need more health care both in person and with telehealth, she said. “Right now, our reservation? We don’t have accessibility.”

‘Not 100% Accurate’

Inside a trailer that serves as the temporary headquarters for Fort Hall’s tribal broadband office, Goli sat at a desk in June and scanned the Federal Communications Commission’s most recent online map of the reservation.

As the tribes’ broadband project manager, Goli didn’t like what she saw on the map. Blue hexagons highlighted varying rates of high-speed coverage and signified that high-speed internet is available on much of the reservation. Companies have told federal regulators they provide fast transmission speeds to homes there.

“These are untrue,” Goli said. Fort Hall has about 2,400 households, and nearly all of them live without high-speed internet, she said.

When it comes to tracking who on a reservation has high-speed internet, “everybody acknowledges, including the FCC, that the map is not 100% accurate,” said Robert Griffin, co-chair of the Fiber Broadband Association Tribal Committee, an industry trade group. He is also the broadband director for the Choctaw Nation of Oklahoma.

Attempting to correct the maps is one of the many tasks Goli has taken on since becoming the Shoshone-Bannock Tribes’ broadband project manager in January 2023 — seven months after the tribes won the award.

A series of hurdles, including flaws in the plan initially approved by the federal government and a cyberattack, have delayed the project, she said. The attack hit in August 2024 and for months shut down nearly all phones and computers on the reservation.

“We didn’t have access to any of our information,” Goli told KFF Health News this month, adding that the tribes are still “in recovery mode” from the attack.

Goli, who grew up on the reservation and still plays basketball at the tribal gym, left her job as a data analyst in Seattle to return home to be with family and to work. For two years, and with no broadband industry experience, Goli has overseen the multimillion-dollar grant without a staff.

Her first task, she said, was to collect data that could help create a realistic plan to deliver broadband to every home on the reservation. “Data tells a story,” Goli said.

Fort Hall and many other tribal lands are remote with rugged, expansive terrain. To build fiber-optic cables underground, the tribes must navigate lava rock and work with the Bureau of Indian Affairs to get permits. To build communications towers, the tribes must ensure they follow migratory bird rules for American bald eagles. To provide wireless connections, the tribes must buy or license spectrum from federal regulators, Goli said.

When the federal tribal broadband program launched, more than 300 tribal applicants — pitching projects totaling $5 billion  — submitted requests to the NTIA. During a later round of funding, more than 160 tribal applicants asked for more than $2.6 billion, even though only $980 million was available. There are 574 federally recognized tribes in the United States.

The tribal program funding was not enough to “build out Indian Country,” said Joe Valandra, chief executive and chairman of the broadband consulting firm Tribal Ready. Valandra is a member of the Rosebud Sioux Tribe of South Dakota.

Congress created the tribal program to be used in combination with funds from the larger $42 billion Broadband, Equity, Access, and Deployment, or BEAD, program, Valandra said.

But now, it seems “the administration has no appetite for expensive broadband infrastructure builds in rural areas,” said Jessica Auer, a senior researcher with the community broadband networks team at the Institute for Local Self-Reliance, a research and advocacy nonprofit.

Auer, who has followed the implementation of tribal programs, said the administration may think the money already given to states for BEAD, as well as the use of satellite internet connections, will be enough for tribal lands.

“They seem to have a strong interest in declaring this problem solved,” she said. Low-earth-orbit satellites, though, are costly for the consumer and do not always offer the consistent high speeds they should, she said.

Goli’s plan does not include the use of satellites. On Fort Hall, the few households that have fast speeds now buy Starlink, but tribal leaders say the $80 to $120 monthly subscription costs are too expensive for most members.

The newly revised plan will use a hybrid of fiber-optic cables and wireless internet to ensure that people can “live their lives, whether it be health, education, telehealth,” Goli said.

The Test

Ladd Edmo, a councilman for the Shoshone-Bannock Tribes, thinks the tribal broadband project is taking too long.

Goli “is doing the best she can,” Edmo said.

But when he thinks about the millions waiting to be spent, Edmo said, he worries federal regulators “can just grab it back.”

“I’m not afraid of the current administration,” said Edmo, who is in his fifth term on the tribes’ business council. “I just think that they’re looking for money everywhere they can.”

Edmo lives about half a mile from the Fort Hall townsite and said he can’t really use his internet because he “gets a tremendous amount of buffering.” When he travels to doctors for his prostate cancer treatment, Edmo has them print paper schedules to keep track of his treatment.

He said he is not a big fan of telehealth, “probably because I don’t know how to use it.”

For 53-year-old Carol Cervantes Osborne, who also lives on the reservation, having internet is a necessity. Osborne is in constant pain from severe rheumatoid arthritis.

“I’m just all broke down,” Osborne said as she stared at the open pasture last June. She talked about how she misses riding cattle roundups. At times, Osborne has been bed-bound because of her arthritis and bad knees. She said she tapped her credit line, which uses land and cattle as collateral, and signed up for Starlink so that she can connect with doctors remotely through telehealth appointments.

“I’m poor because of it, but we’ve got to have it,” Osborne said.

Meanwhile, nearly 15 months after the cyberattack, Goli said the tribes are beginning to hire vendors.

“Things happen very slow when it comes to processing things in the tribal government,” Goli said, adding there are a lot of “checks and balances.”

This month — as the holidays approached — Goli said she was excited.

“We’ve actually started our first segment of fiber,” Goli said. The engineering work is done, and they have begun issuing permits, she said. The fiber-optic lines, built by a private vendor, will cover a two-mile segment on the northern end of the reservation. The line will come from outside the reservation and connect to the tribes’ data hub, which is an old radio station still being converted into broadband offices.

“It’s our first segment, and we’re really using this as a test,” Goli said.

Eventually, the old radio station will be central to operations, with fiber-optic cable lines that web out over about 800 square miles to reach the reservation’s five district lodges. Each lodge will establish a communications tower, which will use the fiber line to power wireless antennas that will then provide high-speed internet to the reservation’s most remote homes.

Goli said the tribes are applying for another extension — and, she said, they would not be the only award winners of the Tribal Broadband Connectivity Program to ask for more time. Working with tribes, she said, takes time.

“It really saddens me that we’ve been left behind all these years,” Goli said, but “this is our opportunity. We want to do it right, slow and steady.”

Sarah Jane Tribble, KFF Health News’ chief rural correspondent, spent more than a year interviewing Frances Goli through calls, texts, and emails. She traveled to Fort Hall Reservation twice, having received tribal approval to visit the land: in spring 2024 and again in summer 2025. Tribble also reviewed publicly requested copies of the tribal contract and interviewed dozens of industry and regulatory broadband experts.

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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Hunt died five days later. Her death certificate said the foot injury was a “significant” factor. Genesis denied wrongdoing but agreed to pay $3.5 million in a settlement Hunt’s son signed in August 2024.

Yet Genesis hasn’t paid most of that debt, court records show. It may never have to.

Once the nation’s largest nursing home chain, Genesis says it was spending $8 million a month defending and settling lawsuits over resident injuries and deaths in recent years. But the company is now poised to wipe the liability slate clean by seeking refuge in the most protective corner of the legal system for the nursing home industry: bankruptcy court.

The Genesis case, one of 11 large senior care bankruptcies this year, illustrates how health care companies can dodge public and financial accountability for alleged negligence through delays, confidentiality clauses, and bankruptcy maneuvers, a KFF Health News investigation found.

When it filed for bankruptcy in Dallas in July, Genesis estimated its total liability for nearly a thousand settled and pending lawsuits at $259 million. A KFF Health News review of the terms of 155 settlement agreements and corporate financial statements shows Genesis officials knew insolvency was possible yet included provisions in its settlement agreements allowing it to defer payment, often for a year or more.

As a result, Genesis paid nothing in 85 cases and only a portion in the other 70, according to civil court records and bankruptcy claims made available through people with access to them. It still owes $41 million of the $58 million it had agreed to pay in those cases, the records show.

“It just feels like they killed my mom and got away with it,” said Vanessa Betancourt, whose mother, Nellie Betancourt, a retired nurse, fractured her hip at a Genesis home in Albuquerque, New Mexico — an injury the medical examiner’s report said led to her death. Genesis agreed to a $650,000 settlement with Betancourt’s family in April under the condition it would not need to pay the first of seven installments for another year, according to the settlement document.

Genesis denied wrongdoing in all lawsuits and settlements. In a written statement, the company did not answer questions about individual personal injury cases. The statement said Genesis remained “focused on delivering high-quality, compassionate care to our patients and residents without disruption” during bankruptcy.

One lawsuit Genesis settled for nearly $1 million alleged nursing home managers ignored repeated warnings about a male resident’s behavior before he sexually assaulted a female Alzheimer’s patient, according to court records. In a case the company resolved for $500,000, a Genesis nursing home was accused of delaying the hospitalization of a resident who had vomited brown mucus. He died of a bowel obstruction. Genesis has paid nothing for either settlement, according to bankruptcy claims.

Creditors, including families of the deceased, are expected to salvage a fraction of what they were promised, if anything. On Dec. 10, the company’s owners were scheduled to seek approval by the U.S. Bankruptcy Court for the Northern District of Texas to sell its nursing homes and other assets to its largest investor, a private equity firm. In court papers, lawyers for residents and other creditors say the complex plan will prevent them from pursuing Genesis’ new ownership and other companies they blame for the company’s collapse.

John Anthony, a bankruptcy attorney representing 340 personal injury claims against Genesis, said, “They never had any intention to honor these deals.”

Low Ratings and Fines

During years of financial turmoil, Genesis has frequently struggled to provide top-notch care, federal records show. Using its five-star system, the Centers for Medicare & Medicaid Services rated 58% of homes affiliated with Genesis as below average or much below average. CMS has fined Genesis homes $10 million for violating federal health standards over the past three years.

In 2022, Connecticut health regulators shuttered a Genesis home after two deaths and multiple violations. The company closed another Connecticut nursing home this year after residents twice were evacuated over safety concerns.

In its Chapter 11 filing, Genesis said it cared for about 15,000 residents in 165 nursing homes and 10 assisted living facilities in 18 states. They are centered in Pennsylvania, West Virginia, New Mexico, New Hampshire, New Jersey, Maine, Alabama, Maryland, and North Carolina, according to the bankruptcy filing.

The company said it owed $709 million in secured debt to lenders and the IRS. Under bankruptcy rules, those debts, backed by Genesis collateral, take precedence over the $1.6 billion in unsecured debt Genesis said it owes. Unsecured creditors include a pension fund; contractors that provided health services and equipment; Pennsylvania, New Mexico, and West Virginia for unpaid provider taxes; and former residents and their families who sued.

Dangers in Memory Care

Sandia Ridge Center, a Genesis home in Albuquerque, was repeatedly faulted by health regulators for not preventing sexual misbehavior in its memory care unit. In November 2021, CMS cited the home for lacking enough nurses to prevent sexual abuse among residents. An inspection report the following August identified more inappropriate sexual contact. Police were called to investigate sexual assault allegations in February and March of 2023, police reports show; neither resulted in criminal charges.

Then in April 2023, a 61-year-old male resident with alcohol-related dementia sexually assaulted a female resident with Alzheimer’s in the dining room, according to a police report and an inspection report. When the resident screamed for him to stop and that he was hurting her, he responded “shut up bitch I know you like this,” according to a lawsuit brought on behalf of the woman, identified in court papers as R.S.

Sandia Ridge management had been aware of the male resident’s behavioral issues for months, according to employee depositions in the case. Police had investigated a prior sexual assault allegation against him the previous year without bringing charges. In one deposition, a former activities assistant testified he hit her and twice pushed her into a bathroom while announcing, “I want to have sex with you.” When she reported him to a senior Genesis manager, she said in the deposition, the manager put his finger over his lips and said, “Shhh.”

The activities worker testified that R.S. used to happily sing along with Elvis Presley songs. After the assault, the worker said, R.S. “don’t sing anymore.”

Inspectors cited the home for failing to protect R.S. The same report said the home didn’t provide a therapist for another female resident who was being sexually harassed. Medicare fined Sandia Ridge Center $91,247. Genesis denied liability but settled R.S.’ lawsuit for $925,000 in May, according to the bankruptcy claim.

“We just felt we have to hold them accountable,” R.S.’ daughter said in an interview, speaking on the condition that she and her mother not be identified, because of the nature of the assault. “Maybe I’m wrong, maybe I’m naive, but the only way to do that is to sue someone, right?”

Genesis has not paid any of the settlement, according to the family’s claim filing.

Growth and Debt

Genesis’ downfall can be traced to 2007, when affiliates of two private equity firms acquired the company in a $1.5 billion leveraged buyout, taking on substantial debt, according to its bankruptcy filing. Private equity also has been involved in other health care bankruptcies, including those of the HCR ManorCare nursing home chain, the prison health care contractor Corizon Health, and two for-profit hospital systems, Steward Health Care and Prospect Medical Holdings.

In 2011, Genesis raised $2.4 billion by transferring substantially all its nursing home buildings and other real estate to Welltower, a publicly traded real estate investment trust, according to Genesis’ bankruptcy filing. Genesis then rented the buildings back from Welltower, which made leasing costs a significant expense.

Genesis went on a nationwide buying spree. At its peak in 2016, it had grown to more than 500 nursing homes. In a court declaration, Louis Robichaux IV, a consultant overseeing Genesis’ bankruptcy restructuring, wrote that as the company expanded, it became harder to manage and “mired in corporate inefficiencies.” Robichaux wrote that Genesis’ financial woes were exacerbated by rapidly increasing labor costs and lawsuits, including some predating the covid pandemic.

Starting in 2021, Genesis avoided bankruptcy after receiving $100 million in loans from a private equity firm founded by Joel Landau, the owner of a Brooklyn-based nursing home chain, according to Robichaux’s filing.

But Genesis continued to teeter on the edge of insolvency. In audited financial statements for 2022 and 2023 submitted to a California oversight agency, management and auditors said rent and debt obligations raised “substantial doubt about the company’s ability to continue as a going concern.”

In a court filing, a committee appointed by the U.S. Trustee’s Office to represent the unsecured creditors in the bankruptcy accused Landau and Welltower of orchestrating a covert plan that allowed Welltower to keep getting its rents while Landau could run the company and “siphon value to himself.” The committee alleged their efforts forced the company into insolvency while “staffing levels and patient care declined precipitously.” Landau and Welltower did not respond to requests for comment.

Drawn-Out Lawsuits

Erin Pearson sued Genesis over the death of her father, James Sanderson, a retired mining company executive who died in 2018 after spending less than a month at Bear Canyon Rehabilitation Center in Albuquerque. In the memory care unit, Sanderson fell repeatedly, suffered medication errors made by nursing home staff, and developed a bowel obstruction and sepsis, according to the lawsuit, filed in 2019. Pearson’s lawyers said he was not hospitalized until eight days after nurses noticed he was vomiting brown mucus.

After the judge rejected Genesis’ request to force Pearson into arbitration, Genesis appealed. It took 2½ years before an appeals court affirmed the original decision to let the case go forward in court, records show.

This past May, more than five years after suing, Pearson reached a $500,000 settlement, with the first payment required by November, according to a copy of the agreement. Nothing was paid, according to the bankruptcy claim.

“It was so drawn out and for so long,” Pearson said in an interview, calling Genesis’ bankruptcy “despicable.”

Payouts Postponed

Jennifer Foote, an Albuquerque attorney who represents clients in multiple lawsuits against Genesis, including Pearson’s, said the company frequently filed appeals. “They did not usually win them on these issues,” she said, “and our sense was that they were doing it as a delay tactic.”

Genesis started using installment payments around 2018, said Dusti Harvey, Foote’s law partner. “The payments wouldn’t start for several months out,” Harvey said. Foote said Genesis’ lawyers often wanted to time the payments to start the month the trial in the case was scheduled to occur.

Families had to wait even when comparatively small amounts of money were involved, settlement agreements show. Genesis’ settlement agreements also included a confidentiality clause prohibiting discussion of the incidents.

Genesis agreed to pay $42,000 in a November 2024 settlement, but the first payment was not due until nine months later. It was not paid, according to the bankruptcy claim.

A $250,000 settlement signed in October 2023 did not start paying out until the following September. When Genesis declared bankruptcy — 21 months after the case was resolved — it still owed $100,000, according to the family’s claim.

‘We Never Found Out the Truth’

Settling cases allowed Genesis to avoid the expense and publicity of a trial, at which details of how its nursing homes functioned might have been revealed. In October 2020, Margarett Johnson, a retired school bus driver, fell out of her wheelchair at a Genesis nursing home in Waldorf, Maryland, fracturing her jawbone, nose, and neck, according to a lawsuit brought by her family. Johnson was sent to a trauma center and placed on a ventilator. She died three months later, at age 76, from ventilator-associated pneumonia, the lawsuit said.

“It looked like she was hit by a truck,” Angelina Harley, one of her daughters, said in an interview. “I knew my mom was not going to come home. I knew the Lord was not going to punish her more.”

The company denied negligence and blamed the accident on Johnson’s jacket getting tangled in the wheel of her wheelchair, according to the lawsuit. Harley and her sister Angela Swann were dubious.

“We never found out the truth,” Harley said. “They wanted to settle out of court.”

The company denied liability but agreed to a $950,000 settlement in October 2024. It never paid the final $112,500 installment, according to a letter Johnson’s five children sent to the bankruptcy judge.

“If you settle out of court, you know doggone well you did something wrong,” Harley said.

Maddening Judges

By summer 2025, judges in some civil cases had run out of patience.

Alma Brown, a retired day care manager and accordion teacher living in a Genesis nursing home in Clovis, New Mexico, suffered falls, infections, bedsores, and other neglect that hastened her death in 2023, according to her estate’s lawsuit. In Santa Fe District Court, Judge Kathleen McGarry Ellenwood castigated Genesis after it failed to pay $2 million of the $3 million settlement to Brown’s estate or explain the delay.

Genesis “obviously benefited by not having to go to trial,” McGarry Ellenwood said in one hearing, according to a court transcript. “They assure me that they’re not trying to renege on their contract, but it certainly seems like they haven’t lived up to what the bargain was.”

Genesis declared bankruptcy the day McGarry Ellenwood announced she would impose more than $100,000 in fines, plus $10,000 more each day until the settlement was paid.

In Pennsylvania, Greg Hunt petitioned a judge to punish Genesis after it stopped payments of the $3.5 million settlement after the death of his mother, Nancy, the resident with the gangrenous foot. She had spent eight months in 2019 at Brandywine Hall, a Genesis facility in West Chester that was later sold and renamed.

In a filing with the Common Pleas Court of Montgomery County, Genesis admitted it was in arrears but asked the judge for more time, citing “unforeseen and exigent financial challenges.” Genesis said care for patients at its nursing homes would suffer if it had to pay immediately.

Unswayed, Judge Richard Haaz in June ordered Genesis to pay up, along with punitive interest. But the bankruptcy court stayed that order. Genesis still owes $1.4 million of the $2 million it was supposed to pay, according to Hunt’s claim. (The rest of the $3.5 million settlement is supposed to be paid by an insurer in January 2026.) Ian Norris, Hunt’s lawyer, declined to comment, citing confidentiality provisions in the settlement.

Court records indicate Genesis lawyers never disclosed in either case that it was preparing to declare bankruptcy.

‘Bankruptcy as a Tool’

In the first nine months of 2025, 10 other senior living companies with liabilities over $10 million entered Chapter 11 bankruptcy, according to Gibbins Advisors, a consulting firm.

Hamid Rafatjoo, a bankruptcy lawyer representing nursing homes who is not involved in the Genesis bankruptcy case, said filings may increase as the industry has become costlier to run and class action lawsuits have become a fixture.

“Nursing homes get sued all the time for everything,” Rafatjoo said. “A lot of operators wait too long to use bankruptcy as a tool.”

On Dec. 1, Genesis announced the results of its auction, saying it had elected to sell its assets to a private equity firm controlled by Landau. In a court filing, Anthony, the attorney for the personal injury claimants, alleged the auction was stacked in Landau’s favor despite an “objectively better and higher competing bid” from another private equity investor that would have provided more money to creditors. Genesis said in its statement that Landau’s group had increased its bid during the auction.

Sen. Elizabeth Warren (D-Mass.) and two other senators last month asked the U.S. Trustee’s Office to intervene in the case, out of concern that “individuals who already own or control Genesis are trying to sell it to themselves, wiping away legal and other creditor debts in the process.” Lawyers representing those in charge of the auction did not respond to a request for comment.

Families of former Genesis residents said they fear the capacity to purge lawsuits through bankruptcy emboldens nursing home owners who provide deficient care.

“They can file bankruptcy again,” said Gabe Betancourt, whose wife, Nellie, died after her stay at Uptown Rehabilitation Center in Albuquerque. “And we’re the ones that will pay for it, with our memories, our lives.”

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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KFF Health News is working to collect and post complete application materials, by state, here and will update this repository as new materials, released in response to public records requests, arrive.

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Federally recognized tribes can’t directly apply for a share of the rural health fund — only states can. And states aren’t required to consider tribes’ needs. But state applications for the five-year payout show some states with significant Native American populations did so anyway.

Workforce development, technology upgrades, and traditional healing are a few of the initiatives specifically aimed at Native American communities that some states included in their applications, which were due to the Centers for Medicare & Medicaid Services on Nov. 5. The fund was a late addition to the One Big Beautiful Bill Act in response to worries about the harm the spending reductions in Republicans’ bill would have on rural hospitals’ finances.

Some states, including Idaho, Nevada, and Oregon, are also considering setting aside 3% to 10% of their federal payouts to distribute among tribes. Washington proposed setting aside $20 million per year.

Federally recognized tribes have direct relationships with the U.S. government, but state governments also allocate resources to tribes and can create policies that support tribal priorities. States and tribes share concerns about the effect that the massive GOP budget bill, which President Donald Trump signed into law in July, will have on the U.S. health system. The law is expected to reduce federal Medicaid spending by nearly $1 trillion and increase the number of uninsured by approximately 10 million people, according to KFF, a health information nonprofit that includes KFF Health News.

Catherine Howden, a CMS spokesperson, said that states are required to develop their applications in collaboration with key stakeholders, including the state governments’ tribal affairs offices or tribal liaisons, as well as “Indian health care providers, as applicable.” But these entities do not include tribal governments or official tribal representatives.

Tribes can apply for Rural Health Transformation Fund subgrants through their states. But during a recent call with federal health officials, tribal leaders expressed frustration about being regarded as just another stakeholder in the issue rather than sovereign nations. Tribal sovereignty guides most government-to-government consultations over proposed federal actions that would have a substantial effect on tribes.

“Even in a scenario where tribal consultation is required, the quality and quantity of that tribal consultation on a state-by-state basis is all over the place,” said Liz Malerba, director of policy and legislative affairs for the United South and Eastern Tribes Sovereignty Protection Fund, which advocates for tribal nations from Texas to Maine. Malerba is a citizen of the Mohegan Tribe.

Federal policy works better when tribal nations are directly eligible for funding that supports essential services in their communities, Malerba said, adding that tribal leaders are concerned that the reach of the program into their communities will vary considerably.

There are 574 federally recognized tribes and more than 7 million Native American and Alaska Native people in the U.S. The population faces a lower life expectancy and among the poorest health outcomes when compared with other demographics. The Indian Health Service, the federal agency responsible for providing health care to Native Americans and Alaska Natives, has been historically underfunded by Congress.

KFF Health News analyzed how 12 states with significant Native American populations took tribes into account as they developed plans for the pot of federal money.

Idaho, Washington, Montana, and Arizona were among the states that held tribal consultations or listening sessions ahead of the Nov. 5 application deadline.

In states that did not initiate input from tribes, some Native American leaders made sure their voices were heard in other public hearings. Jerilyn Church, CEO of the Great Plains Tribal Leaders’ Health Board, said she attended an October public meeting in South Dakota because she felt it was important for state leaders to consider how they could use the program’s resources on reservations. There are nine federally recognized tribes in the state, and Native American people make up 9% of the population.

“I felt like we needed to help be that advocate,” said Church, a citizen of the Cheyenne River Sioux Tribe.

In the proposed initiatives included in its rural fund application, South Dakota identified tribal community needs such as improved telehealth and funding for doula programs. It also said the state will continue meeting with the Great Plains tribal health board throughout the five-year funding cycle.

In Oklahoma — where more than 14% of the population is Native American, a higher share than in most other states — tribal representatives were invited to weigh in with the rest of the public when the state was gathering information for its application, the details of which have not been publicly released.

“We’ve welcomed input from any Oklahoman,” said state health department spokesperson Erica Rankin-Riley.

North Dakota identified tribes in its state as partners in the Rural Health Transformation Program and included initiatives such as expanding physician residency slots with tribal-specific rotations and opportunities for farm-to-table food distributions. But lawmakers there declined to support a proposal that would have pledged 5% of its federal allotment to tribes. There are five federally recognized tribes in the state, and Native Americans make up nearly 5% of the population.

Some states did include proposals to fund high-priority initiatives for tribes.

Washington’s application for the rural fund included an initiative focused on improving health among Native American communities. Its goals include investing in workforce development for tribes, better care coordination between tribes and rural hospitals, and $2.4 million annually to support Washington State University’s rural health education programs, including its Indigenous health program.

Alaska’s proposal included integrating Indigenous traditional healing in Alaska Native village clinics. It would include offering traditional-healing house calls, hands-on training for healers, and traditional-medicine training for health care providers and staff, according to the application.

One of Oregon’s five initiatives would support the state’s nine federally recognized tribes in improving health outcomes. The state estimates the initiative would require $20 million per year, or 10% of the Rural Health Transformation Program award.

Whether or not states identified funding for tribes or included tribal priorities in their proposals, tribes will be eligible to apply to their states for subgrants of the Rural Health Transformation Program money. While larger tribes that have more resources, such as grant writers and staff to implement programs, could benefit, smaller tribes may struggle to produce competitive applications.

Church said that the Great Plains Tribal Leaders’ Health Board will know the fruits of its labor when states are notified of their rural health fund allotments by the end of the year.

“Hopefully the work that we did, the advocacy that we did, and the outreach,” Church said, “will result in resources getting to our tribes.”

KFF Health News South Dakota correspondent Arielle Zionts contributed to this report.

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

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When his son Adam DiPlacido tried to find a permanent place to care for his father, who now needed a ventilator to breathe through a tracheostomy tube, he discovered none of Missouri’s nearly 500 nursing homes could take him.

“I never thought it would be easy, but I never thought it would be this hard,” Adam said.

A KFF Health News investigation found widespread flaws and gaps in care for some of the country’s most debilitated people: those who cannot breathe on their own.

Spinal cord injuries, strokes, chronic obstructive pulmonary disease, and neurological diseases such as multiple sclerosis have left tens of thousands of Americans permanently dependent on ventilators. The barriers these patients face offer a stark example of how the United States’ disjointed health care system makes dealing with severe illness so much harder.

The investigation found patients are frequently stymied in efforts to get their insurers to provide appropriate home ventilators. They can end up spending hundreds of thousands of dollars for private nurses to make sure they don’t die overnight. Those who need to be in a nursing home or other health facility sometimes must move to another state, far from their families.

“There are not a lot of institutions that can manage these people,” said Jonathon Schwartz, acting chief medical officer for the Spaulding Rehabilitation Network in Boston.

Only 347 of the nation’s roughly 14,750 nursing homes have specialized units dedicated to people on ventilators, a KFF Health News analysis of federal data shows. Fifteen states, including Missouri, have no nursing homes with a specialized unit for ventilator care.

While nursing homes can care for residents on ventilators on their regular floors, in practice few do. From April through June, fewer than 10% of nursing homes had long-stay residents breathing with the assistance of invasive mechanical ventilators, which deliver air through a tube down the airway or via a tracheostomy, the analysis found. Fewer than 15% of nursing homes had short-stay patients on ventilators.

Many patients in nursing homes can be weaned off ventilators, but those who can’t because of their condition often spend years in hospitals, which are not designed for residency. Innovative alternatives to traditional nursing homes exist in some areas of the country, but they haven’t been widely replicated and now are at risk from steep reductions in Medicaid enacted by President Donald Trump and the Republican-controlled Congress.

“It could create a terrible scenario,” said Gene Gantt, a respiratory care consultant to states and insurers.

Many people permanently on ventilators prefer to live at home as long as they can. But care there can be perilous and pricey. Some state health programs pay for ventilator care for low-income patients, but getting enrolled can take months amid bureaucratic hurdles and waitlists.

Some insurers balk at providing advanced home ventilators — which sound alerts for collapsed lungs, airway leaks, or malfunctions and can cost more than $10,000 — until patients have lost much of their ability to breathe.

“Feeling you’re suffocating is a horrific feeling, and that feeling can go on for months and months” as ALS patients decline while sparring with insurers, said Tyler Rehbein, an assistant professor of neurology at the University of Rochester who treats ALS patients.

‘Out of Money’

David Goldstein’s first symptom of ALS was a limp that appeared in the fall of 2022. It took six months for doctors to diagnose him with the neuromuscular disorder, also known as Lou Gehrig’s Disease. ALS afflicts about 34,000 Americans, destroying the nerve cells in the brain and spinal cord that control muscles, including those for breathing. It eventually results in complete paralysis, while most people remain mentally alert. Patients usually end up on ventilators if they do not die first, and respiratory failure is the most common cause of death.

Now 69 and on a ventilator, David cannot move anything except his eyes and mouth, said his ex-wife, Janis Goldstein, who has power of attorney. He requires someone around all the time in his Houston apartment to feed and bathe him, give him medication, and remove mucus blocking his airway. The settings on the ventilator require frequent monitoring and adjustments.

In spring of 2023, David got on the waiting list for Texas’ Medicaid home health program for disabled adults. More than a year later, Texas authorized 12 hours of home care a day. Still, Janis said, the state’s designated administrator sometimes has trouble getting workers for those shifts, and she and her ex-husband must pay for nurses to cover the rest of the day or night.

She said they have spent around a half-million dollars, largely on nurses and aides. They raised much of it through online campaigns and a fundraiser headlined by the country singer Larry Gatlin.

“The point that we’re at now, with the 24-hour help, is we’re pretty much out of money,” Janis said.

She is planning to move David into one of the few nursing homes in the region that take patients on ventilators, she said, but is concerned it will be difficult to arrange for someone to stay with David overnight in his room. She fears that if David’s position shifts even half an inch, he won’t be able to call for help through the machine that tracks his eye movements.

“I don’t know that he’ll be able to handle the stress and the anxiety of knowing that he could suffocate, even in a facility, because he doesn’t have someone by his side,” she said.

Ventilator Deserts

When Michael DiPlacido’s son Adam spent weeks searching for a facility in Missouri that could take care of a patient on a ventilator with a trach tube, the only one that was even a possibility told him it couldn’t accept new patients, because its lone respiratory therapist had quit.

“It’s incredible to me there is not one single place in Missouri that can take a patient like my father,” Adam said.

Looking outside the state, Michael decided to move to a nursing home north of Chicago, about five hours by car from St. Louis. After three months, he left the facility because it was so far away from his family, Adam said.

Adam helped his father move into a long-term care hospital in suburban St. Louis for six weeks. But Michael’s insurer would not pay for hospital-level acute care, so Adam said Michael had to pay more than $47,000 out-of-pocket. Next, Adam helped him move to another Illinois nursing home, about an hour away, that his son had originally rejected because of online reviews, including a Medicare warning that abuse had occurred. Finding it deficient, Michael left after a week.

Adam found a private nursing home company that would care for Michael in his home, at a cost of $960 a day. “After 323 days, my father has finally made it back home,” Adam said in an email in September.

But with his health rapidly deteriorating, Michael was admitted to a hospice facility in October. He died later that month at 75.

Gantt, the respiratory care consultant, said that fewer than half of state Medicaid programs provide adequate reimbursement rates for ventilator patients. He said most state Medicaid payment formulas do not measure outcomes or reward nursing homes financially if they provide better care, such as weaning a patient off the ventilator or preventing infections. He said he has seen nursing homes accept patients with trach tubes even when nurses lack proper training, or when the facility doesn’t employ respiratory therapists.

“For the large part, these patients are stuck in bed,” Gantt said. “We should try to get them the best quality of life.”

David Gifford, the chief medical officer for the American Health Care Association, a nursing home trade group, said equipping a nursing home with ventilators and getting state approval is expensive, and outside of urban areas, many markets lack enough local patients who need ventilators to make it financially worthwhile.

“It’s not as simple as saying we’re going to pay more and have more respiratory therapists,” Gifford said. “This is a group that needs highly specialized care. You’re not going to have it everywhere.”

Flagging Breaths

Derek McManus’ weakening right hand and occasional twitching was the first sign something was wrong. In October 2023, doctors diagnosed Derek, a corporate executive who lives in Painted Post, New York, with ALS.

By August 2024, Derek’s lungs were operating at 78% of capacity, his medical records show. Because ALS progresses so quickly, doctors often prescribe advanced home mechanical ventilators. These machines deliver high-pressure air through a mask (called non-invasive) or a tube down the airway or via a tracheostomy (called invasive). They can calibrate themselves based on a patient’s breathing and have alarms that detect leaks, airway blockages, and device malfunctions. They can run on portable power sources and backup batteries in case of a power failure. The machines can allow people to talk or eat.

But some insurers have what physicians call “fail first” policies that won’t pay for ventilators unless the patient has already tried a respiratory assist device without success (as defined by the company). These simpler machines, the kind sleep apnea patients use, are not as effective in removing carbon dioxide as ventilators and lack safety features. Commonly known by the acronyms BiPAP or CPAP, they can cost $1,000 or more and need to be plugged into an electrical socket.

“It seems to be an expectation of insurance companies they should live the rest of their life attached to a wall outlet,” said Rehbein, the University of Rochester neurologist.

In November 2024, Derek’s insurer denied his physician’s request for a ventilator, writing that “you have not failed treatment” with the simpler device, according to the insurer’s letter, provided by his wife, Lesley McManus. By April, Derek’s breathing capacity had dropped to 60% of normal. Lesley said she worried he would suffocate overnight if his basic device stopped working, since it had no safety alert. “He couldn’t take the mask off, because he can’t move his hands,” she said.

The insurer denied a second request for a ventilator, reiterating that Derek had not shown the simpler machine hadn’t worked, according to another insurance letter. Derek, who is 56, appealed to an independent medical reviewer, who overturned the insurer’s decision and ordered it to provide a ventilator, according to a copy of the ruling. The doctor wrote that the machine’s alarm system and capacity to automatically clear away airway secretion by simulating a cough were “vital for patient safety” and would help protect Derek from developing pneumonia.

“This multi-faceted approach to respiratory care is essential for improving gas exchange, reducing the work of breathing, and ultimately enhancing the patient’s quality of life and extending survival,” the decision said.

Derek said that since he got the new machine, he’s breathing easier, literally and emotionally. “If I’m not breathing right, it will give it an alert, and it will let us know if I don’t have the mask on properly,” he said.

The McManus family requested KFF Health News not publish their insurer’s name, out of fear of repercussions.

Insurance Rules

John Hansen-Flaschen, a pulmonologist who founded Penn Medicine’s program for home assisted ventilation, said some patients give up when an insurer denies their requests and don’t file appeals. “These are some of the most vulnerable people there are, and they don’t have energy to do this,” he said.

Doctors who treat patients with neuromuscular disorders said the most resistance to providing ventilators comes from some private Medicare Advantage plans, but they said it also has been an issue with some commercial policies.

Insurers dispute that they refuse ventilators for patients who need them. The written policy of Excellus BlueCross BlueShield, which Rehbein said was one of the companies that covers his patients, requires simpler breathing machines to have failed before patients can get the more sophisticated ventilator. After a KFF Health News inquiry, Excellus clarified its policy with a footnote saying it does consider mechanical ventilators as first-line therapy for certain situations, such as ALS, on a case-by-case basis.

UnitedHealthcare confirmed that some of its policies require that a less complex device be tried initially and found ineffective before a ventilator can be authorized. Aetna’s policy doesn’t mandate a stepped process and says it considers mechanical ventilators based on the severity of the condition and “where interruption or failure of respiratory support would lead to death,” with other patients eligible only for the simpler devices. Humana and Cigna did not respond to requests to provide their policies.

Chris Bond, a spokesperson for AHIP, the health insurance industry’s trade organization, said, “Health plans work to connect patients with safe, clinically appropriate care and welcome opportunities to work with policymakers and stakeholders across the health care system to continually improve access and precisely address any coverage-related issues.”

Melanie Lendnal, senior vice president for policy and advocacy at the ALS Association, said, “I haven’t met one person yet living with ALS, or a family member, who has not had to fight — really fight — to get a non-invasive ventilator.”

A Model in Massachusetts

In 2019, David Marion, a 36-year-old plumber, was hanging out with friends in Lowell, Massachusetts, when he tripped on the sidewalk and fractured his neck. The injury rendered him quadriplegic and paralyzed his abdominal and diaphragm muscles, requiring him to use a ventilator. Surgeons performed a tracheotomy, and over the next year and a half, Marion lived in two long-term acute care hospitals. “I didn’t get out of bed” at the second hospital, Marion, now 43, said in an interview.

His mother, Denise Valliere, who lives in New Hampshire, said she grew desperate trying to find a permanent home for him that was close enough that she could visit. “Some of those nursing homes are pretty sad places,” she said.

At the end of 2020, Marion’s luck turned. He was accepted by the Leonard Florence Center for Living in Chelsea, Massachusetts, which has created an alternative to the institutional life most nursing homes can offer people on ventilators. The center follows the Green House philosophy, with small residences each serving 10 people, with private bedrooms, a common living room, and outdoor space. Residents set their own schedules, including when and what to eat. The center has 10 residences in its building; six are dedicated to people dependent on ventilators, including those with ALS or MS.

The center’s respiratory therapists helped Marion get to the point where he didn’t need a feeding tube and didn’t require his ventilator for portions of the day. The center provided a portable ventilator attached to his wheelchair and a computer tablet that Marion operates with his mouth. It allows him to summon the elevator, open doors, go outside, and adjust his bed, window shades, temperature, and television settings. Other residents who can’t use their hands or mouths can operate the devices through a camera that captures eye movement.

“This gives back independence to people who never thought they’d have independence again,” said Barry Berman, the chief executive officer of Chelsea Jewish Lifecare, the nonprofit that owns the Leonard Florence Center. “There are alternatives. It doesn’t have to be the way that it is.”

Most of the residents’ stays are paid for by Medicaid, which together with Medicare provides the bulk of the center’s revenue. Its finances are bolstered by the nonprofit’s endowment, something most nursing homes lack. Berman said that since the center opened in 2010, he has hosted dozens of visitors interested in replicating its model elsewhere in the country, but no one has.

Some states have licensed facilities that aren’t nursing homes to care for people on ventilators. In California, some people on ventilators live in “congregate living health facilities,” which are residential houses that provide 24-hour skilled nursing for the terminally ill, people who are catastrophically or severely disabled, or people who are mentally alert but physically disabled.

Patients often must pay privately because Medicaid managed care programs don’t include these facilities as a benefit, said Mariam Voskanyan, who is president of the state association representing congregate living facilities and owns one in Los Angeles. California’s Medi-Cal program is authorized to pay these kinds of facilities through its Home and Community-Based Alternatives waiver, but the program is at capacity and there is a waitlist of more than 5,000 people.

Researchers expect states will be under pressure to reduce or eliminate programs like these to make up for nearly $900 billion in coming Medicaid reductions, since the federal government does not require states to cover respiratory care for people on ventilators or nursing home alternatives.

Valliere, Marion’s mother, said she was baffled that there were not more places like Leonard Florence. “How can we be so behind in that kind of care and those kinds of facilities if we’re the best country in the world,” she asked. “Why is this?”

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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