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Keith Poulsen’s jaw dropped when farmers showed him images on their cellphones at the World Dairy Expo in Wisconsin in October. A livestock veterinarian at the University of Wisconsin, Poulsen had seen sick cows before, with their noses dripping and udders slack.

But the scale of the farmers’ efforts to treat the sick cows stunned him. They showed videos of systems they built to hydrate hundreds of cattle at once. In 14-hour shifts, dairy workers pumped gallons of electrolyte-rich fluids into ailing cows through metal tubes inserted into the esophagus.

“It was like watching a field hospital on an active battlefront treating hundreds of wounded soldiers,” he said.

Nearly a year into the first outbreak of the bird flu among cattle, the virus shows no sign of slowing. The U.S. government failed to eliminate the virus on dairy farms when it was confined to a handful of states, by quickly identifying infected cows and taking measures to keep their infections from spreading. Now at least 875 herds across 16 states have tested positive.

Experts say they have lost faith in the government’s ability to contain the outbreak.

“We are in a terrible situation and going into a worse situation,” said Angela Rasmussen, a virologist at the University of Saskatchewan in Canada. “I don’t know if the bird flu will become a pandemic, but if it does, we are screwed.”

To understand how the bird flu got out of hand, KFF Health News interviewed nearly 70 government officials, farmers and farmworkers, and researchers with expertise in virology, pandemics, veterinary medicine, and more.

Together with emails obtained from local health departments through public records requests, this investigation revealed key problems, including deference to the farm industry, eroded public health budgets, neglect for the safety of agriculture workers, and the sluggish pace of federal interventions.

Case in point: The U.S. Department of Agriculture this month announced a federal order to test milk nationwide. Researchers welcomed the news but said it should have happened months ago — before the virus was so entrenched.

“It’s disheartening to see so many of the same failures that emerged during the covid-19 crisis reemerge,” said Tom Bollyky, director of the Global Health Program at the Council on Foreign Relations.

Far more bird flu damage is inevitable, but the extent of it will be left to the Trump administration and Mother Nature. Already, the USDA has funneled more than $1.7 billion into tamping down the bird flu on poultry farms since 2022, which includes reimbursing farmers who’ve had to cull their flocks, and more than $430 million into combating the bird flu on dairy farms. In coming years, the bird flu may cost billions of dollars more in expenses and losses. Dairy industry experts say the virus kills roughly 2% to 5% of infected dairy cows and reduces a herd’s milk production by about 20%.

Worse, the outbreak poses the threat of a pandemic. More than 60 people in the U.S. have been infected, mainly by cows or poultry, but cases could skyrocket if the virus evolves to spread efficiently from person to person. And the recent news of a person critically ill in Louisiana with the bird flu shows that the virus can be dangerous.

Just a few mutations could allow the bird flu to spread between people. Because viruses mutate within human and animal bodies, each infection is like a pull of a slot machine lever.

“Even if there’s only a 5% chance of a bird flu pandemic happening, we’re talking about a pandemic that probably looks like 2020 or worse,” said Tom Peacock, a bird flu researcher at the Pirbright Institute in the United Kingdom, referring to covid. “The U.S. knows the risk but hasn’t done anything to slow this down,” he added.

Beyond the bird flu, the federal government’s handling of the outbreak reveals cracks in the U.S. health security system that would allow other risky new pathogens to take root. “This virus may not be the one that takes off,” said Maria Van Kerkhove, director of the emerging diseases group at the World Health Organization. “But this is a real fire exercise right now, and it demonstrates what needs to be improved.”

A Slow Start

It may have been a grackle, a goose, or some other wild bird that infected a cow in northern Texas. In February, the state’s dairy farmers took note when cows stopped making milk. They worked alongside veterinarians to figure out why. In less than two months, veterinary researchers identified the highly pathogenic H5N1 bird flu virus as the culprit.

Long listed among pathogens with pandemic potential, the bird flu’s unprecedented spread among cows marked a worrying shift. It had evolved to thrive in animals that are more like people biologically than birds.

After the USDA announced the dairy outbreak on March 25, control shifted from farmers, veterinarians, and local officials to state and federal agencies. Collaboration disintegrated almost immediately.

Farmers worried the government might block their milk sales or even demand sick cows be killed, as poultry are, said Kay Russo, a livestock veterinarian in Fort Collins, Colorado.

Instead, Russo and other veterinarians said, they were dismayed by inaction. The USDA didn’t respond to their urgent requests to support studies on dairy farms — and for money and confidentiality policies to protect farmers from financial loss if they agreed to test animals.

The USDA announced that it would conduct studies itself. But researchers grew anxious as weeks passed without results. “Probably the biggest mistake from the USDA was not involving the boots-on-the-ground veterinarians,” Russo said.

Will Clement, a USDA senior adviser for communications, said in an email: “Since first learning of H5N1 in dairy cattle in late March 2024, USDA has worked swiftly and diligently to assess the prevalence of the virus in U.S. dairy herds.” The agency provided research funds to state and national animal health labs beginning in April, he added.

The USDA didn’t require lactating cows to be tested before interstate travel until April 29. By then, the outbreak had spread to eight other states. Farmers often move cattle across great distances, for calving in one place, raising in warm, dry climates, and milking in cooler ones. Analyses of the virus’s genes implied that it spread between cows rather than repeatedly jumping from birds into herds.

Milking equipment was a likely source of infection, and there were hints of other possibilities, such as through the air as cows coughed or in droplets on objects, like work boots. But not enough data had been collected to know how exactly it was happening. Many farmers declined to test their herds, despite an announcement of funds to compensate them for lost milk production in May.

“There is a fear within the dairy farmer community that if they become officially listed as an affected farm, they may lose their milk market,” said Jamie Jonker, chief science officer at the National Milk Producers Federation, an organization that represents dairy farmers. To his knowledge, he added, this hasn’t happened.

Speculation filled knowledge gaps. Zach Riley, head of the Colorado Livestock Association, said he suspected that wild birds may be spreading the virus to herds across the country, despite scientific data suggesting otherwise. Riley said farmers were considering whether to install “floppy inflatable men you see outside of car dealerships” to ward off the birds.

Advisories from agriculture departments to farmers were somewhat speculative, too. Officials recommended biosecurity measures such as disinfecting equipment and limiting visitors. As the virus kept spreading throughout the summer, USDA senior official Eric Deeble said at a press briefing, “The response is adequate.”

The USDA, the Centers for Disease Control and Prevention, and the Food and Drug Administration presented a united front at these briefings, calling it a “One Health” approach. In reality, agriculture agencies took the lead.

This was explicit in an email from a local health department in Colorado to the county’s commissioners. “The State is treating this primarily as an agriculture issue (rightly so) and the public health part is secondary,” wrote Jason Chessher, public health director in Weld County, Colorado. The state’s leading agriculture county, Weld’s livestock and poultry industry produces about $1.9 billion in sales each year.

Patchy Surveillance

In July, the bird flu spread from dairies in Colorado to poultry farms. To contain it, two poultry operations employed about 650 temporary workers — Spanish-speaking immigrants as young as 15 — to cull flocks. Inside hot barns, they caught infected birds, gassed them with carbon dioxide, and disposed of the carcasses. Many did the hazardous job without goggles, face masks, and gloves.

By the time Colorado’s health department asked if workers felt sick, five women and four men had been infected. They all had red, swollen eyes — conjunctivitis — and several had such symptoms as fevers, body aches, and nausea.

State health departments posted online notices offering farms protective gear, but dairy workers in several states told KFF Health News that they had none. They also hadn’t heard about the bird flu, never mind tests for it.

Studies in Colorado, Michigan, and Texas would later show that bird flu cases had gone under the radar. In one analysis, eight dairy workers who hadn’t been tested — 7% of those studied — had antibodies against the virus, a sign that they had been infected.

Missed cases made it impossible to determine how the virus jumped into people and whether it was growing more infectious or dangerous. “I have been distressed and depressed by the lack of epidemiologic data and the lack of surveillance,” said Nicole Lurie, an executive director at the international organization the Coalition for Epidemic Preparedness Innovations, who served as assistant secretary for preparedness and response in the Obama administration.

Citing “insufficient data,” the British government raised its assessment of the risk posed by the U.S. dairy outbreak in July from three to four on a six-tier scale.

Virologists around the world said they were flabbergasted by how poorly the United States was tracking the situation. “You are surrounded by highly pathogenic viruses in the wild and in farm animals,” said Marion Koopmans, head of virology at Erasmus Medical Center in the Netherlands. “If three months from now we are at the start of the pandemic, it is nobody’s surprise.”

Although the bird flu is not yet spreading swiftly between people, a shift in that direction could cause immense suffering. The CDC has repeatedly described the cases among farmworkers this year as mild — they weren’t hospitalized. But that doesn’t mean symptoms are a breeze, or that the virus can’t cause worse.

“It does not look pleasant,” wrote Sean Roberts, an emergency services specialist at the Tulare County, California, health department in an email to colleagues in May. He described photographs of an infected dairy worker in another state: “Apparently, the conjunctivitis that this is causing is not a mild one, but rather ruptured blood vessels and bleeding conjunctiva.”

Over the past 30 years, half of around 900 people diagnosed with bird flu around the world have died. Even if the case fatality rate is much lower for this strain of the bird flu, covid showed how devastating a 1% death rate can be when a virus spreads easily.

Like other cases around the world, the person now hospitalized with the bird flu in Louisiana appears to have gotten the virus directly from birds. After the case was announced, the CDC released a statement saying, “A sporadic case of severe H5N1 bird flu illness in a person is not unexpected.”

‘The Cows Are More Valuable Than Us’

Local health officials were trying hard to track infections, according to hundreds of emails from county health departments in five states. But their efforts were stymied. Even if farmers reported infected herds to the USDA and agriculture agencies told health departments where the infected cows were, health officials had to rely on farm owners for access.

“The agriculture community has dictated the rules of engagement from the start,” said Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota. “That was a big mistake.”

Some farmers told health officials not to visit and declined to monitor their employees for signs of sickness. Sending workers to clinics for testing could leave them shorthanded when cattle needed care. “Producer refuses to send workers to Sunrise [clinic] to get tested since they’re too busy. He has pinkeye, too,” said an email from the Weld, Colorado, health department.

“We know of 386 persons exposed — but we know this is far from the total,” said an email from a public health specialist to officials at Tulare’s health department recounting a call with state health officials. “Employers do not want to run this through worker’s compensation. Workers are hesitant to get tested due to cost,” she wrote.

Jennifer Morse, medical director of the Mid-Michigan District Health Department, said local health officials have been hesitant to apply pressure after the backlash many faced at the peak of covid. Describing the 19 rural counties she serves as “very minimal-government-minded,” she said, “if you try to work against them, it will not go well.”

Rural health departments are also stretched thin. Organizations that specialize in outreach to farmworkers offered to assist health officials early in the outbreak, but months passed without contracts or funding. During the first years of covid, lagging government funds for outreach to farmworkers and other historically marginalized groups led to a disproportionate toll of the disease among people of color.

Kevin Griffis, director of communications at the CDC, said the agency worked with the National Center for Farmworker Health throughout the summer “to reach every farmworker impacted by H5N1.” But Bethany Boggess Alcauter, the center’s director of public health programs, said it didn’t receive a CDC grant for bird flu outreach until October, to the tune of $4 million. Before then, she said, the group had very limited funds for the task. “We are certainly not reaching ‘every farmworker,’” she added.

Farmworker advocates also pressed the CDC for money to offset workers’ financial concerns about testing, including paying for medical care, sick leave, and the risk of being fired. This amounted to an offer of $75 each. “Outreach is clearly not a huge priority,” Boggess said. “I hear over and over from workers, ‘The cows are more valuable than us.’”

The USDA has so far put more than $2.1 billion into reimbursing poultry and dairy farmers for losses due to the bird flu and other measures to control the spread on farms. Federal agencies have also put $292 million into developing and stockpiling bird flu vaccines for animals and people. In a controversial decision, the CDC has advised against offering the ones on hand to farmworkers.

“If you want to keep this from becoming a human pandemic, you focus on protecting farmworkers, since that’s the most likely way that this will enter the human population,” said Peg Seminario, an occupational health researcher in Bethesda, Maryland. “The fact that this isn’t happening drives me crazy.”

Nirav Shah, principal deputy director of the CDC, said the agency aims to keep workers safe. “Widespread awareness does take time,” he said. “And that’s the work we’re committed to doing.”

As President-elect Donald Trump comes into office in January, farmworkers may be even less protected. Trump’s pledge of mass deportations will have repercussions whether they happen or not, said Tania Pacheco-Werner, director of the Central Valley Health Policy Institute in California.

Many dairy and poultry workers are living in the U.S. without authorization or on temporary visas linked to their employers. Such precarity made people less willing to see doctors about covid symptoms or complain about unsafe working conditions in 2020. Pacheco-Werner said, “Mass deportation is an astronomical challenge for public health.”

Not ‘Immaculate Conception’

A switch flipped in September among experts who study pandemics as national security threats. A patient in Missouri had the bird flu, and no one knew why. “Evidence points to this being a one-off case,” Shah said at a briefing with journalists. About a month later, the agency revealed it was not.

Antibody tests found that a person who lived with the patient had been infected, too. The CDC didn’t know how the two had gotten the virus, and the possibility of human transmission couldn’t be ruled out.

Nonetheless, at an October briefing, Shah said the public risk remained low and the USDA’s Deeble said he was optimistic that the dairy outbreak could be eliminated.

Experts were perturbed by such confident statements in the face of uncertainty, especially as California’s outbreak spiked and a child was mysteriously infected by the same strain of virus found on dairy farms.

“This wasn’t just immaculate conception,” said Stephen Morrison, director of the Global Health Policy Center at the Center for Strategic and International Studies. “It came from somewhere and we don’t know where, but that hasn’t triggered any kind of reset in approach — just the same kind of complacency and low energy.”

Sam Scarpino, a disease surveillance specialist in the Boston area, wondered how many other mysterious infections had gone undetected. Surveillance outside of farms was even patchier than on them, and bird flu tests have been hard to get.

Although pandemic experts had identified the CDC’s singular hold on testing for new viruses as a key explanation for why America was hit so hard by covid in 2020, the system remained the same. Bird flu tests could be run only by the CDC and public health labs until this month, even though commercial and academic diagnostic laboratories had inquired about running tests since April. The CDC and FDA should have tried to help them along months ago, said Ali Khan, a former top CDC official who now leads the University of Nebraska Medical Center College of Public Health.

As winter sets in, the bird flu becomes harder to spot because patient symptoms may be mistaken for the seasonal flu. Flu season also raises a risk that the two flu viruses could swap genes if they infect a person simultaneously. That could form a hybrid bird flu that spreads swiftly through coughs and sneezes.

A sluggish response to emerging outbreaks may simply be a new, unfortunate norm for America, said Bollyky, at the Council on Foreign Relations. If so, the nation has gotten lucky that the bird flu still can’t spread easily between people. Controlling the virus will be much harder and costlier than it would have been when the outbreak was small. But it’s possible.

Agriculture officials could start testing every silo of bulk milk, in every state, monthly, said Poulsen, the livestock veterinarian. “Not one and done,” he added. If they detect the virus, they’d need to determine the affected farm in time to stop sick cows from spreading infections to the rest of the herd — or at least to other farms. Cows can spread the bird flu before they’re sick, he said, so speed is crucial.

Curtailing the virus on farms is the best way to prevent human infections, said Jennifer Nuzzo, director of the Pandemic Center at Brown University, but human surveillance must be stepped up, too. Every clinic serving communities where farmworkers live should have easy access to bird flu tests — and be encouraged to use them. Funds for farmworker outreach must be boosted. And, she added, the CDC should change its position and offer farmworkers bird flu vaccines to protect them and ward off the chance of a hybrid bird flu that spreads quickly.

The rising number of cases not linked to farms signals a need for more testing in general. When patients are positive on a general flu test — a common diagnostic that indicates human, swine, or bird flu — clinics should probe more deeply, Nuzzo said.

The alternative is a wait-and-see approach in which the nation responds only after enormous damage to lives or businesses. This tack tends to rely on mass vaccination. But an effort analogous to Trump’s Operation Warp Speed is not assured, and neither is rollout like that for the first covid shots, given a rise in vaccine skepticism among Republican lawmakers.

Change may instead need to start from the bottom up — on dairy farms, still the most common source of human infections, said Poulsen. He noticed a shift in attitudes among farmers at the Dairy Expo: “They’re starting to say, ‘How do I save my dairy for the next generation?’ They recognize how severe this is, and that it’s not just going away.”

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It seems simple: Require hospitals and insurers to post their negotiated prices for most health care services and — bingo — competition follows, yielding lower costs for consumers.

But nearly four years after the first Trump administration’s regulations forced hospitals to post massive amounts of pricing information online, the effect on patients’ costs is unclear. And while President Joe Biden added requirements to make pricing information more user-friendly, Donald Trump’s imminent return to the White House has raised questions about what’s next, even though posting prices is an area of rare bipartisan agreement.

The uncertainty of what might happen next led some proponents to lobby Congress to include hospital and insurer price transparency in must-pass legislation before Trump takes office. That would turn both his and Biden’s regulations into law, making them less susceptible to being weakened or repealed by a future administration. But that effort failed.

The legislative step could also help protect against legal challenges in the wake of a Supreme Court decision that limited government agencies’ regulatory authority.

Employers are using transparency data to try to slow growth of their health care costs, and “the last thing you want to do is start over,” said James Gelfand, president and CEO of the ERISA Industry Committee, which represents large employers who finance their own health plans. His group is among the organizations pressing Congress to act.

“Congress’ failure to act is deeply disappointing, but employers and other advocates will redouble our efforts,” Gelfand said. “This will get done.”

While there are reports that many hospitals are not fully complying, federal regulators have sent thousands of warning letters to hospitals and fined just over a dozen.

The transparency rules require hospitals to list the prices they accept from all insurers for thousands of items and services, from stitches to delivery room costs to X-rays. For consumers, hospitals must also provide a list of 300 “shoppable” services, including bundled prices accepted for common services such as having a baby or getting a hip replacement. Insurers in July 2022 were similarly required to list their negotiated prices, not only for care at hospitals, but also surgery centers, imaging facilities, laboratories, and doctors’ offices.

It’s a massive and often confusing amount of data that has drawn interest from researchers and commercial outlets like Turquoise Health, which has sought to organize the information to better help ordinary consumers shopping for medical services or employers overseeing workers’ health plans.

The data shows a huge variation in prices, both in what hospitals charge and what insurers pay, for the same services. But the result of making those prices public is so far hard to quantify.

A recent study by Turquoise looked at negotiated rates in the nation’s 10 largest metro areas for a set of common health care services. It found that rates in the top quarter tier — the most expensive category — declined by 6.3% from December 2021 to June 2024, during the time the transparency rules were in place. But negotiated rates for the lowest-cost tier of services rose by 3.4%.

That may indicate hospitals and insurers — who can now see what rivals are charging and paying — have either cut prices or demanded better rates, at least for the costliest services.

Even so, Gerard Anderson, who oversees research into the data as a professor at the Bloomberg School of Public Health at Johns Hopkins University, said the changes Turquoise noted were small and are not reflective of what his team has seen in their own studies.

“So far we have not detected any impact of this data on behavior, of where insurers decide to go or what hospitals do to change prices once they realize what others are charging,” Anderson said.

Some health policy experts think it’s unlikely the incoming Trump administration would reverse its prior commitment to price transparency.

“I don’t see a world where he tanks his own regulations,” said Joe Wisniewski, an associate vice president at Turquoise Health. “There is also so much broad bipartisan support on the Hill.”

The current price-posting rules began with requirements in the Affordable Care Act, which the initial Trump administration more fully defined. The hospital industry failed in a legal challenge to block those rules, and the Trump-era requirements became effective in January 2021.

But even after the Biden administration made the data more user-friendly, it’s still not very helpful to consumers, Anderson said.

“This data is not telling them the price they will pay. It’s telling them the average price people paid last month or last quarter for a similar type of service,” he said.

More useful, Anderson and other experts say, are requirements in the price transparency rules that demand insurers offer online calculators for hundreds of nonemergency services. The detailed cost estimates must take into account how much patients have paid toward annual deductibles.

For uninsured consumers or others who don’t have access to online calculators, it remains difficult to piece together how much a service might cost from the information hospitals post online. For one thing, not every hospital has posted its negotiated rates.

The Department of Health and Human Services’ inspector general said in November an audit of 100 hospitals found that 63 complied with the price transparency rule, while the rest failed to meet one or more requirements.

The advocacy group Patient Rights Advocate, which looked at a sample of 2,000 hospitals, says that only 21% were fully compliant, although it used broader measures for compliance than the inspector general.

“By keeping their prices hidden, hospitals continue to block American consumers from their right to compare prices and protect themselves from overcharges,” said Cynthia Fisher, founder and chairman of the group, which has called for stricter rules and enforcement.

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Las nuevas inscripciones bajo la Ley de Cuidado de Salud a Bajo Precio (ACA) parecen ser hasta un millón menos que el  número récord del año pasado, especialmente por problemas con el programa que enfrenta la saliente administración Biden.

La reelección de Donald Trump para un segundo mandato ha generado incertidumbre sobre el futuro de la ley de salud. Además, el gobierno implementó normas complejas para reducir las inscripciones fraudulentas y está combatiendo una demanda que busca evitar que un grupo de inmigrantes sin residencia legal adquieran cobertura en los mercados de seguros de salud.

Hasta ahora, el número de nuevos inscritos y reinscritos que utilizan cuidadodesalud.gov, el sitio del mercado federal que usan 31 estados, está por debajo del año pasado. A principios de diciembre, las nuevas inscripciones apenas superaban las 730,000, en comparación con 1.5 millones en el mismo período de 2023.

Para dar más tiempo a los consumidores de los estados del mercado federal para inscribirse, los Centros de Servicios de Medicare y Medicaid (CMS) extendieron hasta el 18 de diciembre el plazo para adquirir cobertura que comienza el 1 de enero. (El plazo del 15 de enero es para la que comenzaría el 1 de febrero).

También está en juego una regla emitida por la administración Biden que permite, por primera vez, que los Dreamers, las personas traídas al país de niños sin papeles, puedan inscribirse en los mercados y obtener subsidios.

El 9 de diciembre, un juez federal de Dakota del Norte falló a favor de 19 estados que buscaban bloquear esta directiva de la administración Biden.

El 16, el equipo de Biden obtuvo una suspensión temporal, pero el destino de esta opción todavía está por verse.

De prevalecer, la decisión en este caso, Kansas vs Estados Unidos, efectivamente prohíbiría a quienes han calificado para el programa de Acción Diferida para los Llegados en la Infancia (DACA) inscribirse o recibir subsidios para los planes de ACA en los 19 estados. Según los abogados que siguen el caso, no parece afectar la inscripción o la cobertura en otros estados.

Se espera una decisión final sobre la suspensión temporal en cualquier momento. Si se concede, podría permitir que los Dreamers sigan inscribiéndose mientras se escucha la apelación del gobierno a la decisión del tribunal de distrito, lo cual es poco probable que ocurra antes de que Trump asuma el cargo.

En sus documentos judiciales, la administración Biden argumenta que no conceder una suspensión sería muy disruptivo en medio del período de inscripción abierta, lo que causaría que el gobierno federal incurra en costos para reajustar su mercado para reflejar el cambio y notificar a aquellos que ya se han inscrito que sus planes han sido cancelados.

El caso original fue presentado en agosto en el Tribunal de Distrito de los Estados Unidos para el Distrito de Dakota del Norte y está siendo escuchado por el juez de distrito Daniel Traynor, nominado en 2019 por el entonces presidente Trump.

Previamente, el gobierno federal estimó que alrededor de 100,000 personas sin seguro de un total de medio millón de beneficiarios de DACA podrían inscribirse para tener cobertura de 2025. En su nuevo escrito, el gobierno dice que 2,700 se han inscrito en los estados que presentaron la demanda y que usan el mercado federal.

La regla de la administración Biden, finalizada en mayo, aclaró que quienes califican para DACA serían considerados “legalmente presentes” para los propósitos de inscribirse en planes bajo ACA, los cuales están abiertos a ciudadanos y aquellos denominados inmigrantes “legalmente presentes”.

Los abogados federales argumentan que Dakota del Norte no ha demostrado que sería perjudicado por la regla, por lo que no tiene legitimidad para presentar el caso. El estado argumentó que incurre en costos para aproximadamente 130 beneficiarios de DACA que viven allí, y que no tendría esos gastos si se les prohibiera inscribirse en ACA y, por lo tanto, decidieran abandonar el país.

Por su parte, el gobierno federal argumentó que un éxodo es poco probable. El escrito legal también cuestionó el cálculo de Dakota del Norte de que incurre en costos de $585 para emitir licencias de conducir a los beneficiarios de DACA y alrededor de $14,000 anuales para educar al menos a un miembro o dependiente de DACA.

Todos los estados que impugnan esta regla argumentan que causará cargas administrativas y económicas a medida que más individuos se inscriban, y que alentará a más personas a permanecer en Estados Unidos sin documentos.

Los estados demandantes son: Alabama, Arkansas, Florida, Idaho, Indiana, Iowa, Kansas, Kentucky, Missouri, Montana, Nebraska, New Hampshire, Dakota del Norte, Ohio, Carolina del Sur, Dakota del Sur, Tennessee, Texas y Virginia.

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It’s open enrollment season for the Affordable Care Act — and there are ongoing challenges.

First up, enrollment.

New and returning sign-ups through healthcare.gov — the federal marketplace that serves 31 states — are well below last year’s rate. New enrollments were just over 730,000 in early December, compared with 1.5 million at the same time last year.

To give consumers in those states more time to enroll, the Centers for Medicare and Medicaid Services extended the deadline to Wednesday to sign up for coverage that starts Jan. 1. (Open enrollment itself ends in most states on Jan. 15, for coverage that would begin Feb. 1.)

Meanwhile, the Biden administration is seeking to put on hold an order by a federal judge in North Dakota who ruled in favor of 19 states that challenged a rule allowing — for the first time — enrollment in ACA coverage by “dreamers,” people brought to the United States as children without immigration paperwork.

The Dec. 9 ruling effectively barred those who qualified for the Deferred Action for Childhood Arrivals (DACA) program in the 19 states from enrolling in or getting subsidies for ACA plans. It does not appear to affect enrollment or coverage in other states, lawyers following the case have said.

On Monday, the U.S. Court of Appeals for the 8th Circuit granted a temporary stay of the order at the government’s request. A final decision, expected any day, could extend the stay while the court hears the appeal.

The Biden administration argues that North Dakota hasn’t proved it would be harmed by the rule — and that not granting a stay would be disruptive. The Dec. 9 order would cause the federal government to incur financial costs if it has to retool the marketplace to reflect the change and notify those who have already enrolled that their plans are canceled, the administration argued.

The original case was filed in August in U.S. District Court in North Dakota and is being heard by District Judge Daniel Traynor, who was nominated in 2019 by then-President Donald Trump.

Previously, the federal government estimated that about 100,000 uninsured people out of a half-million DACA recipients might sign up for 2025 coverage. In its new filing, the government says 2,700 have enrolled through the federal marketplace, and an unknown number in states involved in the litigation that run their own state-based marketplaces.

The Biden administration rule, finalized in May, clarified that those who qualify for DACA would be considered “lawfully present” for the purpose of enrolling in plans under the ACA.

All the states challenging the ACA rule say it will cause administrative and resource burdens as more people enroll, and that it will encourage additional people to remain in the United States when they don’t have permanent legal authorization.

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OCR, in partnership with the US Attorney’s Office for the District of Rhode Island, entered into a proposed consent decree with the State of Rhode Island.

Tom Contos is an avid runner. When he started experiencing rectal bleeding in March, he thought exercise could be the cause and tried to ignore it. But he became increasingly worried when the bleeding continued for weeks.

The Chicago health care consultant contacted his physician at Northwestern Medicine, who referred him for a diagnostic colonoscopy, at least partly because Contos, 45, has a family history of colon issues.

“I work out a lot,” he said. “But my partner said this isn’t normal. My primary care physician said, ‘Given your family history, let’s get you in.’”

Northwestern Memorial Hospital asked him to prepay $1,000 out-of-pocket, and he underwent the procedure in June.

Then the bill came.

The Medical Procedure

Colonoscopies are performed in the United States more than 15 million times a year. Rates of colorectal cancer are on the rise, particularly among younger people.

The procedure, which is also a recommended screening for people 45 or older, involves examining the large intestine using a tube with a video camera that can also collect tissue samples.

It typically takes less than one hour, with another hour spent taking the patient’s history, administering anesthesia, and monitoring their recovery, said Glenn Littenberg, a physician who recently chaired the reimbursement committee of the American Society of Gastrointestinal Endoscopy.

According to Contos’ medical record, the gastroenterologist who performed his colonoscopy described it as “not difficult.” He biopsied and removed small growths called polyps from two spots and identified large internal hemorrhoids, which are swollen veins.

The biopsy samples were sent to pathology for testing and found to be precancerous. But the gastroenterologist reported finding no evidence of cancer, and after reviewing the pathology report, he concluded hemorrhoids were the likely cause of the bleeding.

The Final Bill

The hospital charged a total of $19,206 for the procedure, including physician fees. The insurer negotiated the price to $5,816 and paid $1,979, leaving a patient share of $4,047. (It wasn’t clear why the payments added up to slightly more than the negotiated price.) After Contos had paid $1,000 up front, plus $1,381 right after the procedure, the hospital said he still owed $1,666.

The Billing Problem: Colonoscopies That Find Polyps Cost More

Contos was shocked and angry when he received his itemized bill. “I said, ‘I don’t understand this.’ Then I started to research the cost.”

He asked the hospital what it charges for a diagnostic colonoscopy and was told he’d been sent a cost estimate through his online patient portal prior to the procedure.

The estimate, which took his deductible of $3,200 into account, listed a total price of $7,203, with an out-of-pocket bill of $2,381. He asked Northwestern why the charges were nearly three times the estimate and why his out-of-pocket share was nearly twice as high.

One big reason was revealed in an explanation of benefits (EOB) statement from Contos’ insurance company, Aetna: Northwestern had charged for two colonoscopies, at $5,466 each. And there were two fees for the gastroenterologist — $1,535 and $1,291.

The first procedure was listed as “colonoscopy and biopsy,” while the second was listed as “colonoscopy w/lesion removal.” Aetna’s negotiated member rate reduced the first $5,466 hospital charge to $3,425, while the charge for the second procedure was lowered to $1,787 — $1,638 less.

Neither the bill nor the EOB explained why there was a second procedure listed, at a reduced price.

After examining Contos’ bill, Littenberg said it’s standard for providers to bill for two colonoscopies if they remove two or more polyps in different ways, because of the extra work. As in this case, hospitals typically use a modifier code that reduces the amount charged for the second billed colonoscopy so they charge only for the extra work, he added.

“How do you explain that in sensible terms that anyone could understand?” Littenberg said.

Even with that reduction, Littenberg said, he thought Contos’ total out-of-pocket cost of $4,047 was “a lot, though not rare for large academic centers.”

Contos’ insurance documents show Aetna’s negotiated rate for his colonoscopy at Northwestern was more than twice the insurer’s median negotiated rate for the same procedure at other Chicago-area hospitals, according to Forrest Xiao, director of quantitative research at Turquoise Health, a company that gathers health care price data.

In exchanges with Northwestern and Aetna representatives, Contos asked why he was charged for two colonoscopies. A Northwestern representative said that because of the modifier code, he wasn’t actually being billed for two procedures, which Contos found bewildering.

“I told Northwestern, ‘I’m not paying that, and I don’t care if you send me to collections,’” he said. He filed appeals with the hospital and Aetna but was ultimately told the billing was correct.

The Resolution

In an email, Contos told the billing department that its charge was “ridiculously high.” A representative responded that Northwestern’s pricing is in line with other academic medical centers in Chicago and “non-negotiable” — and that his account would be turned over to a collections agency.

CVS Health spokesperson Phillip Blando said in a written statement to KFF Health News that the claims for Contos were “paid accurately” by Aetna, declining further comment. (CVS Health owns Aetna.)

Northwestern did not respond to multiple requests for comment.

Contos said he wrote to his physician that he was regretfully dropping him and leaving Northwestern entirely because of the health system’s high pricing.

He said he’s still experiencing periodic symptoms, which he relieves with over-the-counter Preparation H. A one-ounce tube of the ointment costs $10.99 at CVS.

The Takeaway

To get a colonoscopy at a lower price, Littenberg said, patients should consider going to a freestanding endoscopy center or ambulatory surgery center not associated with a hospital. A 2023 study found that ambulatory surgery centers billed insurers an average of about $1,030 for a colonoscopy with biopsy or with removal of a polyp, compared with $1,760 at a hospital.

Bill of the Month

• A Toddler Got a Nasal Swab Test but Left Before Seeing a Doctor. The Bill Was $445. Nov 27, 2024
• Toddler’s Backyard Snakebite Bills Totaled More Than a Quarter Million Dollars Oct 30, 2024
• In Chronic Pain, This Teenager ‘Could Barely Do Anything.’ Insurer Wouldn’t Cover Surgery. Sep 25, 2024

More from the series

To get a sense of how much a diagnostic colonoscopy could cost, patients can consult a hospital’s price website and an insurer’s cost-estimator website, both required by federal price transparency rules.

Patients also can look up a good-faith estimate of the cash price, which can be lower than the price for patients using insurance to pay for a procedure. In addition, they can check prices through websites such as Turquoise Health and Fair Health, which draw from federal price transparency data or claims data from insurers.

Still, the actual cost could be higher than the estimate if the colonoscopy finds one or more polyps that need to be removed and biopsied, which occurs in at least 40% of all colonoscopies, Littenberg said. Patients should ask whether the price includes those potentially extra services. After all, the point of a diagnostic colonoscopy is to find and, if necessary, treat lesions that could cause problems — regardless of the number found.

It all should be easier for patients, Xiao said: “You shouldn’t have to be a medical billing expert to know what you’re going to pay.”

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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New enrollments under the Affordable Care Act are on pace to trail last year’s record numbers by as many as a million as the outgoing Biden administration confronts upheavals in the program.

Donald Trump’s election to a second term has cast uncertainty around the future of the health law. In addition, the Biden administration implemented cumbersome policies to reduce fraudulent enrollment and is combating a lawsuit that aims to block immigrants who lack legal residency from buying insurance under the program.

So far, the number of new and returning enrollees using healthcare.gov — the federal marketplace that serves 31 states — is below last year’s. New enrollments were just over 730,000 in early December, compared with 1.5 million at the same time last year.

To give consumers in federal marketplace states more time to enroll, the Centers for Medicare & Medicaid Services extended to Dec. 18 the deadline to sign up for coverage that starts Jan. 1. (The Jan. 15 deadline is for coverage that would begin Feb. 1.)

Also in flux is a rule issued by the Biden administration allowing — for the first time — enrollment in ACA coverage by people brought to the U.S. as children without immigration paperwork, known as “Dreamers.”

The Biden team was granted a temporary stay on Dec. 16 by the U.S. Court of Appeals for the 8th Circuit regarding a Dec. 9 order by a federal judge in North Dakota. That district court judge had ruled in favor of 19 states that sought to block the Biden administration’s Dreamers directive. Without a stay, the decision in that case, Kansas v. the United States, effectively bars those who have qualified for the Deferred Action for Childhood Arrivals program in the 19 states from enrolling in or getting subsidies for ACA plans. It does not appear to affect enrollment or coverage in other states, lawyers following the case have said.

A final decision on the temporary stay was expected any day now. If granted, it could allow Dreamers to continue enrolling while the government’s appeal of the district court ruling is heard, which is unlikely to occur before Trump takes office.

In its court filings, the Biden administration argues that not granting a stay would be very disruptive in the middle of open enrollment, causing the federal government to incur costs in retooling its marketplace to reflect the change, and notifying those who have already enrolled that their plans are canceled.

The original case was filed in August in the U.S. District Court for the District of North Dakota and is being heard by District Judge Daniel Traynor, who was nominated in 2019 by then-President Trump.

Previously, the federal government estimated that about 100,000 uninsured people out of a half-million DACA recipients might sign up for 2025 coverage. In its new filing, the government says 2,700 have enrolled in those states that brought the suit and use the federal marketplace.

The Biden administration rule, finalized in May, clarified that those who qualify for DACA would be considered “lawfully present” for the purposes of enrolling in plans under the ACA, which are open to citizens and those who are called “lawfully present” immigrants.

The federal lawyers argue that North Dakota has not proved it would be harmed by the rule, so it has no standing to bring the case. North Dakota argued that it incurs costs for approximately 130 DACA recipients who live in its state, and that it would not have those expenses if they were barred from enrolling in the ACA and thus decided to leave the country. An exodus is unlikely, the federal government argued. The legal brief also questioned North Dakota’s calculation that it incurs costs of $585 to issue driver’s licenses to the DACA recipients and about $14,000 annually to educate at least one DACA member or dependent.

All the states challenging the ACA rule say it will cause administrative and resource burdens as more people enroll, and that it will encourage additional people to remain in the U.S. when they don’t have permanent legal authorization. The plaintiff states are Alabama, Arkansas, Florida, Idaho, Indiana, Iowa, Kansas, Kentucky, Missouri, Montana, Nebraska, New Hampshire, North Dakota, Ohio, South Carolina, South Dakota, Tennessee, Texas, and Virginia.

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HHS OCR announces agreement with Delaware to enforce Federal disability rights laws, resolving a complaint involving unnecessary institutional confinement.

Three Democratic senators asked the country’s top nonpartisan government watchdog on Tuesday to investigate the costs of a Georgia program that requires some people to work to receive Medicaid coverage.

The program, called “Georgia Pathways to Coverage,” is the nation’s only active Medicaid work requirement.

Pathways has cost tens of millions in federal and state dollars on administration and consulting fees while enrolling 5,542 people as of Nov. 1, according to KFF Health News’ reporting. The congressional letter cited the reporting in its request to the Government Accountability Office.

“Republicans are hell-bent on putting mountains of red tape between Americans and their health care,” Sen. Ron Wyden (D-Ore.), head of the Senate Finance Committee, said in a statement about the letter he co-wrote. “Taxpayers deserve to hear from an independent watchdog about the true costs of the Republican health care agenda.”

Georgia Sens. Jon Ossoff and Raphael Warnock co-signed the request.

The Democrats’ letter asks the GAO to prepare a summary of the costs to run the program — and detail how much of that has been picked up by the feds, break down the cost of the program per person, and assess how Georgia has used contractors to run the program and how federal officials have overseen it.

The request comes as President-elect Donald Trump, who supported work requirements in his first administration, is set to take office and potentially transform how people qualify for Medicaid, the joint federal-state health insurance program for people who are disabled or have low incomes.

Many GOP-led states have pushed for work requirements in public benefits programs such as Medicaid, arguing that they promote employment. Georgia’s Pathways program requires some Medicaid applicants to prove they are working, volunteering, or studying for 80 hours a month.

The first Trump administration approved work requirements in 13 states. Only Georgia’s program, which started on July 1, 2023, is in effect. A Medicaid work requirement launched in Arkansas was halted by a court order in 2019.

In November, South Dakota voters gave lawmakers a green light to seek a work requirement for some Medicaid enrollees. In 2023, North Carolina lawmakers directed the state to seek work requirements if the federal government would approve such a waiver. And some GOP-led states have indicated they might also seek work requirements.

Georgia’s program has been a priority of Republican Gov. Brian Kemp, and his team defended the program.

“The Senators should be more focused on examining the failures of the federal government to adequately provide the services they’re required to administer than looking for every opportunity to criticize states that are taking innovative approaches,” Garrison Douglas, a Kemp spokesperson, said in an emailed statement.

Enrollment in the program, which as of Dec. 13 was 5,903, has fallen far short of the state’s initial projection of more than 25,000 in the first year.

The program has cost more than $40 million in state and federal funds, largely administrative costs and not medical care for enrollees, Georgia officials have said. KFF Health News reported in March that Georgia officials estimated the program’s administrative costs could increase to $122 million over four years.

A spokesperson for Georgia’s Medicaid agency, Fiona Roberts, said the costs “increased significantly” because of the program’s delayed launch. While it was approved by the Trump administration, the Biden administration attempted to block it, resulting in a legal fight.

KFF Health News has also reported that the program has slowed processing times for other Medicaid applications and for public benefits such as cash assistance and food stamps.

Meanwhile, more than a year after Pathways’ launch, Georgia officials said they still had not removed enrollees for failing to prove they are working, volunteering, or studying for 80 hours a month, KFF Health News has reported.

“State leaders continue to put taxpayer dollars behind their ineffective health care program that has failed by nearly every metric,” Warnock said.

Previous federal research suggests that the high costs per enrollee associated with Georgia’s program could be repeated elsewhere. The Trump administration didn’t properly weigh administrative costs in state applications for work requirements, according to a 2019 GAO report. Pathways is slated to expire on Sept. 30, unless federal officials grant an extension.

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Colorado’s new voter-approved gun initiative has a target unlike those of previous measures meant to reduce gun violence. The tax on guns and ammunition is meant to generate revenue to support cash-strapped victim services, and it’s an open question whether it will affect firearms sales.

The 6.5% tax on manufacturers and sellers — including pawnbrokers — of guns, gun parts, and ammunition will generate an estimated $39 million a year. The money is aimed primarily at crime victim services, including groups that help victims of domestic violence. Some of it is earmarked for behavioral and mental health for veterans and youth, and a sliver will support school security.

Firearm deaths have been rising in Colorado since at least 2006, growing more quickly than the state’s population, and with a notable bump in homicides early in the covid pandemic, which prompted a national gun-buying spree. The tax could have public health effects beyond generating money for social services, researchers said. But they don’t know for sure because only one other state, California, has a gun-and-ammo tax — an 11% tax that has been in effect only since July.

Emmy Betz directs the Firearm Injury Prevention Initiative at the University of Colorado School of Medicine and wonders if the tax will change consumer behavior. “The question is whether that will change gun sales or not,” she said.

A federal tax has been levied on gun manufacturers for more than a century — currently at 10% for pistols/revolvers and 11% for other kinds of firearms, plus cartridges and shells.

Colorado state Rep. and Majority Leader Monica Duran, a Democrat, co-sponsored the new law, scheduled to take effect in April. Voters approved it in November as Proposition KK. The connection between firearms and domestic violence is stark: Nationally, every month an average of 57 women are killed by an intimate partner using a gun. Researchers have also found that 59% of mass shootings between 2014 and 2019 in the United States were related to domestic violence.

Support groups for victims of domestic violence and other crimes receive funding through the 1984 federal Victims of Crime Act. Those dollars mostly come from fines and penalties from convicted federal criminals and fluctuate annually depending on what cases the Department of Justice pursues. Federal prosecutions and fines have dropped, so the state’s pot of money has shrunk from nearly $57 million in 2018, when Duran was first elected, to about $14 million in 2024 — a 76% drop.

But the need for victim support services has grown, said Duran, who is a gun owner and a survivor of domestic violence who used such services to escape homelessness.

Colorado’s new tax is what economists call a “Pigouvian” tax, which seeks to compensate financially for the societal toll or damage a product causes. For example, people who drive cars pay a tax on gas, which goes toward repairing roads.

“It’s not because you’re a bad driver that we’re taxing gasoline. It’s because we need this money to be able to improve our infrastructure in ways that allow people to continue to use that product,” said Rosanna Smart, an economist who co-directs the Rand Gun Policy in America initiative.

She said Colorado’s gun tax is similar: It supports the social infrastructure that’s required in a society with firearms.

In 2022, the U.S. Supreme Court ruled that people can carry a gun outside their homes for self-defense. Smart said the decision made it harder to pass laws restricting gun possession and highlighted the importance of historical precedent. Both the California and Colorado tax laws cite taxes passed by eight states and then-independent Hawaii between 1844 and 1926.

The actual effect of the Colorado and California laws won’t be known for some time. But should other states pursue similar policies, researchers think focusing taxes on specific weapons or places might be more effective at reducing harm, rather than simply generating revenue.

Smart, for example, found that if the goal is to reduce harm, a more optimal design would be to follow the lead of alcohol policies and have varying tax levels based on an item’s likelihood to cause harm.

Adam Rosenberg, a doctoral candidate in economics at Stanford University, found doing so at the national level, by rejiggering the federal tax to be 13.3% on handguns and nothing on long guns, would prevent deaths while holding industry profits steady.

The Colorado tax applies to firearms dealers, manufacturers, and ammunition vendors that make at least $20,000 a year (excluding sales to law enforcement or active-duty military). Neither state officials nor lawmakers nor industry groups could confirm what fraction of firearm businesses that represents. According to data from the Bureau of Alcohol, Tobacco, Firearms and Explosives, about 2,200 firearms dealers or pawnbrokers and manufacturers of ammunition/firearms operate in the state. Ammunition sellers aren’t tallied in that figure.

Some firearms businesses worry the tax will drive people across state lines to purchase guns.

“We’ve already got people saying, ‘Well, we can run over to Utah or Wyoming instead,’” said Frank Sadvar of Northwest Outfitters, a gun store and pawn shop in Craig. The city is a 40-minute drive to Wyoming and 1½ hours to Utah.

“The way it was worded on the ballots, it looked really good,” he said. But Sadvar suspects the revenue will fall short of the $39 million estimated because supporters didn’t factor in sales lost to other states.

In Cortez, which is a half-hour drive from New Mexico, Jesse Fine said he’s heard people say they’d rather drive there to buy a gun than pay the tax in Colorado — even though they’d face a seven-day waiting period there.

Fine, who manages Goods for the Woods, an outdoor gear shop carrying a range of firearms and hunting equipment, said he believes the tax discriminates against gun owners who are exercising their civil rights.

“It makes it hard for a mom-and-pop shop to stay in play,” he said. “We’re going to take the biggest hit because we’re not a big corporation.”

Victim services organizations said they will be in a tight spot financially until the new tax’s revenue starts to fully flow in 2026.

Courtney Sutton, public policy director of the Colorado Organization for Victim Assistance, said most victim service agencies in the state, many of which are members of COVA, “heavily, heavily rely on” the federal funds that have been ballooning up and down.

“We did get $6 million from the state budget, but that’s not very much across 215 programs,” she said, referencing the state’s four victim services coalitions.

The new tax is estimated to bring in $30 million a year to such groups.

Rocky Mountain Victim Law Center executive director Emily Tofte Nestaval said she hopes the new tax revenue will help the center restart a program for people sorting out protection orders, housing issues, and name changes, among other things. Nestaval said that, for now, crime victims in Colorado are on their own.

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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Ann Lewandowski knows all about pharmacy benefit managers, or PBMs, the companies that shape the U.S. drug market. Her job, as a policy advocate at drugmaker Johnson & Johnson, was to tell patient and physician groups about the PBMs’ role in high drug prices.

Armed with that knowledge, Lewandowski filed a potentially groundbreaking lawsuit in February. Rather than targeting the PBMs, however, she went after a big company that uses one — her own employer, Johnson & Johnson.

Lewandowski charges in her lawsuit that by contracting with the PBM Express Scripts, which is part of the insurance giant Cigna, Johnson & Johnson — which fired her in April — failed in its duty to ensure reasonable drug prices for its more than 50,000 U.S. employees.

By choosing an Express Scripts plan, she charged, J&J cost employees “millions of dollars in the form of higher payments for prescription drugs, higher premiums, higher deductibles, higher coinsurance, higher copays, and lower wages or limited wage growth.”

Lewandowski, 40, from outside Madison, Wisconsin, relies on an expensive multiple sclerosis drug. She brought the lawsuit, she said, because she “had trouble aligning the policy positions” she reported on as a J&J employee “with the actions I experienced as a health plan user.”

In recent years, the opaque business practices of PBMs have drawn fire. The Federal Trade Commission is conducting a lengthy investigation of the three biggest companies and sued them in September, accusing the firms of driving up insulin prices. Bipartisan bills in Congress would rein them in. And businesses such as Mark Cuban’s Cost Plus Drugs and smaller, “transparent PBMs” have tried to wean pharmaceutical companies and health plans from their reliance on the big PBMs.

But Lewandowski’s lawsuit goes to a sensitive spot that had been overlooked until recently: language in the 2021 appropriations bill that revised the 1974 Employee Retirement Income Security Act, known as ERISA. The original law focused on stopping fraudulent retirement plans.

Her lawsuit is based on congressional language specifying that the law’s requirement of prudent management covers health as well as retirement benefits. By providing workers with a health plan, employers aren’t “doing you a favor. They are holding your money and investing it in your health,” said Barak Richman, a George Washington University health law professor.

In July, a similar lawsuit was filed against Wells Fargo, and more suits are in the works.

PBMs demand discounts and rebates from drugmakers, which leads the manufacturers to charge higher list prices, which can drive up the price patients pay at the pharmacy. At the same time, retail pharmacies say PBMs are driving them out of business by paying them less than what the PBMs charge health plans — a practice known as spread pricing. Patients typically have no idea what they’ll pay for a drug, and neither do their employers, because many PBMs’ contracts contain nondisclosure clauses.

Dissatisfaction with the status quo and fear of liability are pushing employers to switch from the “Big Three” PBMs to “transparent PBMs,” which don’t shroud their pricing and drug choice decisions.

“We brought on nine Fortune 500s this year, 1.2 million patients,” said AJ Loiacono, CEO of New York City-based Capital Rx, a PBM founded in 2017. According to a recent survey, as many as half of U.S. employers are considering switching.

Cuban, in an interview with KFF Health News, said he has told hundreds of Fortune 500 executives, in one-on-one meetings and in groups, that they are overpaying on drug benefit plans skewed to fatten the wallets of big PBMs.

“You’re getting ripped off,” Cuban said he tells them. “You don’t really understand the elements, and that’s costing you money and costing you wellness. And now you are going to get sued. It’s not a question of if but a question of when.”

Pressuring a Purchasing Cartel

The billionaire, who launched Mark Cuban Cost Plus Drugs in 2022 to upend the byzantine $500 billion U.S. drug market, is convinced that the Lewandowski suit and others will end the dominance of the big PBMs, which control 80% of the business.

Cost Plus Drugs charges a straight 15% markup with small processing fees for the 2,500 drugs it sells, most of them generics, said co-founder Alex Oshmyansky. Its nearly 3 million customers — individuals, health plans, and transparent PBMs — appear to be saving money in many cases.

The big PBMs say their buying power and exclusive access to information enable them to save money for insurers, employers, and patients. Critics say they are skimming up to 25% from the drug market, perhaps $100 billion a year, according to Oshmyansky. The opaque strategies and conflicts of interest, critics say, often result in the poorest, sickest patients paying the most for medications.

The three PBMs amount to a “purchasing cartel,” Oshmyansky said in an interview at Cost Plus’ Dallas headquarters, once the office of broadcast.com, the internet radio company that made Cuban his first billion dollars when he sold it to Yahoo in 1999. “They buy all the drugs, they jack up the prices, and then they resell them.”

Richman and Amy Monahan of the University of Minnesota argued in a journal article this year that the Department of Labor, which has previously focused its ERISA oversight on retirement benefits, should issue standards for the use of health care dollars under the law.

When companies “enter into dumb contracts with insurers or PBMs, arguably they are in violation of ERISA,” Richman said. “Taking the law seriously would really require employers, who are spending half the health care dollars in the country, to spend that money in very different ways.”

Some drug market experts, however, doubt the ERISA lawsuits will succeed. Complex PBM money channels “make it hard to build a case,” said Stacie Dusetzina, a professor of health policy at Vanderbilt University School of Medicine. “You might think your company is overpaying, but relative to what?”

The ERISA Industry Committee, which lobbies Congress for some of the biggest U.S. companies, is asking Congress to give PBMs the specific duty to represent their clients’ financial interests, said Melissa Bartlett, the group’s senior vice president for health policy. That could require patients to sue the PBMs rather than their employers.

A few big employers are already changing their drug plans.

In 2019, Connecticut became CVS’ first PBM customer to negotiate a transparent fee structure. Its contract required 100% of drug rebates be passed along to the state and eliminated spread pricing.

The state decided to go further when it sought a new contract for its 214,000 employees this year, said Joshua Wojcik, director of health policy and benefits in the state comptroller’s office. Instead of discounts and rebates, it demanded the lowest net cost per employee.

Of the three big PBMs, only CVS bid on the contract. It edged out a few “transparent PBMs” — a sign, in Wojcik’s view, that CVS at least doesn’t want to be left out as more customers ditch the current PBM business model.

With the change, Wojcik estimates the state will save up to $70 million a year.

$13.40 vs. $2,500

Changing drug benefit policies at big companies takes time, said Oshmyansky of Cost Plus. Their PBM contracts last three to five years, so “you have to capture them in that one year where they are evaluating other options,” he said. PBMs pay benefit plan consultants and the brokers big companies hire to steer business their way.

“We have this weird structure where multiple sclerosis, cancer patients subsidize everybody else’s drugs,” Oshmyansky said. Instead of creating a pool that spreads costs to everyone with insurance, there’s a “disproportionate burden placed on the sickest members.”

Cost Plus generates the biggest savings for its customers on about 50 extraordinarily high-priced generic drugs. The poster child is imatinib, a generic cancer pill that Cost Plus sells for $13.40 for a 30-day supply, compared with the $2,500 it retails for at pharmacies. A study conducted by Dusetzina and colleagues found Medicare could save $662 million a year just by buying imatinib and six other generic cancer drugs from Cost Plus rather than through a big PBM.

Ironically, though, most generic drugs are cheaper in the U.S. than in Europe or Canada — so cheap, in fact, that they fall into shortages as companies get out of the business or stop making needed improvements to their production lines.

In response, Cost Plus has started a compounding pharmacy to make common generics and soon hopes to have a sort of “private reserve” of 70 to 80 products that it can make on short notice if they go into shortage, Oshmyansky said.

While the company hasn’t yet set up purchase agreements for most brand-name drugs, Oshmyansky and Cuban are hopeful. Drugmakers, through their trade group Pharmaceutical Research and Manufacturers of America, have lobbied fiercely to rein in PBMs in the past two years.

At a Sept. 24 hearing at which Sen. Bernie Sanders (I-Vt.) grilled Novo Nordisk CEO Lars Fruergaard Jørgensen over high prices for diabetes and weight loss drugs Ozempic and Wegovy, the executive expressed support for a more transparent pricing model.

“On average for our products we give 74% in rebates to PBMs” for every $1 the company charges, he said. If, instead, “we simply paid the PBMs a small fee for the limited risk and contribution they make, I think patients would be significantly better off.”

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Among the biggest-grossing films in America in February 2002 were a war drama about American troops in Somalia (“Black Hawk Down”), an Arnold Schwarzenegger action movie (“Collateral Damage”), and a future Oscar winner about a brilliant mathematician struggling with schizophrenia (“A Beautiful Mind”).

But none of these films topped the box office that month. That title went to “John Q.,” a movie about health insurance.

Or, more precisely, a story about a desperate father — played by Denzel Washington — who takes a hospital emergency room hostage at gunpoint when his HMO refuses to cover a heart transplant for his young son.

John Q.’s violent quest for justice was, of course, fictional. And even in the film, no one ends up dead.

Tragically, that wasn’t the case on the streets of New York City on Dec. 4 when a gunman fatally shot Brian Thompson, CEO of health insurance giant UnitedHealthcare.

But there was nothing new about the anger at health insurers that Thompson’s shooting unleashed online — and which suspect Luigi Mangione expressed in a document he allegedly wrote.

In fact, eruptions of public rage have shadowed the American health care system for decades.

In the late 1990s and early 2000s, as “John Q.” was hitting movie screens, Americans were revolting against HMOs, whose practice of denying care to plan members to pad their bottom lines made them public enemy No. 1.

Just a few years later, health insurers stoked new ire for rescinding coverage after people were diagnosed with expensive illnesses like cancer. More recently, insurers’ widening use of cumbersome prior authorization procedures that slow patients’ access to care has provoked yet another round of fury.

The cycle of outrage periodically turns on others in the health care industry as well. Exorbitant bills and aggressive collection tactics, such as garnishing patients’ wages, are sapping public trust in hospitals and other medical providers.

And drug companies — perennial poster children for greed and profiteering — have enraged Americans since at least the 1950s, when new “wonder drugs” like steroids were fueling a growing industry.

When Sen. Estes Kefauver, a Tennessee Democrat who had led an investigation of the Mafia, convened hearings in 1959 to probe high prescription prices, his committee received mountains of mail from Americans who reported being fleeced by drugmakers. One retired rail worker told of having to spend more than a third of his retirement income on medicines for himself and his wife.

All this public outcry has occasionally sparked change. President Barack Obama and congressional Democrats leveraged anger at spiking insurance premiums in California to get the Affordable Care Act over the finish line in 2010, a landmark achievement that expanded health coverage to millions of Americans.

But more often, cycles of rage have been so much sound and fury, producing only modest reforms. In some cases, public anger has yielded more headaches for patients.

The HMO backlash in the late 1990s and early 2000s, for example, prompted employers — from whom about half of Americans get their health coverage — to embrace high-deductible health plans. Many employers saw these plans as a way to hold down costs if they couldn’t limit patients’ choice of medical providers through HMOs. These deductibles, which can reach thousands of dollars a year, are driving tens of millions of Americans into debt.

To many on the left who have long argued for a single-payer, government-run health system, the obstacle to more meaningful relief has been the political power of the same industries — health insurers, drug companies, hospitals — that fuel patient anger.

These industries have indeed proven adept at resisting change that threatened their bottom lines. They’ve also benefited from a paradox in how Americans think about their health care.

Patients may get angry. They may even lose faith in the system. This year, public views of health care quality fell to the lowest point since Gallup began asking about it in 2001, with 44% of Americans rating quality as excellent or good, down from a high of 62%.

Yet more than 70% said their own health care is excellent or good.

There is much debate about what accounts for this paradox. Are Americans just grateful to have the health protections they do? Are they satisfied because most don’t have to use the health care system on a regular basis? Do they simply like their doctor, in the way that voters routinely say they like their own member of Congress but hate Washington politicians? Or do they worry that no matter how frustrating the current system can be, any change risks making the situation worse?

The answer is probably a bit of all of this. Together, such sentiments represent a major challenge for those who hope the current wave of anger at health insurers will drive big improvements.

Could that change? Maybe. These are volatile and unpredictable political times. And the pressure of big medical bills is real. Medical debt, in particular, is exacting a fearsome toll on millions of Americans, KFF Health News’ reporting has shown.

But to drive change, advocates looking to harness public anger at the health care industry probably need to rethink their favored solutions. Old ideas like “Medicare for All,” long cherished on the left, or a deregulated health care market, long championed by the right, haven’t swayed Americans so far, no matter how angry they’ve been.

I don’t know when we’ll see meaningful alternatives. One thing that’s almost certainly on the way: Hollywood’s spin on the death of a health insurance executive gunned down in Midtown Manhattan.

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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LOS ANGELES — President-elect Donald Trump’s promise of mass deportations and tougher immigration restrictions is deepening mistrust of the health care system among California’s immigrants and clouding the future for providers serving the state’s most impoverished residents.

At the same time, immigrants living illegally in Southern California told KFF Health News they thought the economy would improve and their incomes might increase under Trump, and for some that outweighed concerns about health care.

Community health workers say fear of deportation is already affecting participation in Medi-Cal, the state’s Medicaid program for low-income residents, which was expanded in phases to all immigrants regardless of residency status over the past several years. That could undercut the state’s progress in reducing the uninsured rate, which reached a record low of 6.4% last year.

Immigrants lacking legal residency have long worried that participation in government programs could make them targets, and Trump’s election has compounded those concerns, community advocates say.

The incoming Trump administration is also expected to target Medicaid with funding cuts and enrollment restrictions, which activists worry could threaten the Medi-Cal expansion and kneecap efforts to extend health insurance subsidies under Covered California to all immigrants.

“The fear alone has so many consequences to the health of our communities,” said Mar Velez, director of policy with the Latino Coalition for a Healthy California. “This is, as they say, not their first rodeo. They understand how the system works. I think this machine is going to be, unfortunately, a lot more harmful to our communities.”

Alongside such worries, though, is a strain of optimism that Trump might be a boon to the economy, according to interviews with immigrants in Los Angeles whom health care workers were soliciting to sign up for Medi-Cal.

Selvin, 39, who, like others interviewed for this article, asked to be identified by only his first name because he’s living here without legal permission, said that even though he believes Trump dislikes people like him, he thinks the new administration could help boost his hours at the food processing facility where he works packing noodles. “I do see how he could improve the economy. From that perspective, I think it’s good that he won.”

He became eligible for Medi-Cal this year but decided not to enroll, worrying it could jeopardize his chances of changing his immigration status.

“I’ve thought about it,” Selvin said, but “I feel like it could end up hurting me. I won’t deny that, obviously, I’d like to benefit — get my teeth fixed, a physical checkup.” But fear holds him back, he said, and he hasn’t seen a doctor in nine years.

It’s not Trump’s mass deportation plan in particular that’s scaring him off, though. “If I’m not committing any crimes or getting a DUI, I think I won’t get deported,” Selvin said.

Petrona, 55, came from El Salvador seeking asylum and enrolled in Medi-Cal last year.

She said that if her health insurance benefits were cut, she wouldn’t be able to afford her visits to the dentist.

A street food vendor, she hears often about Trump’s deportation plan, but she said it will be the criminals the new president pushes out. “I’ve heard people say he’s going to get rid of everyone who’s stealing.”

Although she’s afraid she could be deported, she’s also hopeful about Trump. “He says he’s going to give a lot of work to Hispanics because Latinos are the ones who work the hardest,” she said. “That’s good, more work for us, the ones who came here to work.”

Newly elected Republican Assembly member Jeff Gonzalez, who flipped a seat long held by Democrats in the Latino-heavy desert region in the southeastern part of the state, said his constituents were anxious to see a new economic direction.

“They’re just really kind of fed up with the status quo in California,” Gonzalez said. “People on the ground are saying, ‘I’m hopeful,’ because now we have a different perspective. We have a businessperson who is looking at the very things that we are looking at, which is the price of eggs, the price of gas, the safety.”

Gonzalez said he’s not going to comment about potential Medicaid cuts, because Trump has not made any official announcement. Unlike most in his party, Gonzalez said he supports the extension of health care services to all residents regardless of immigration status.

Health care providers said they are facing a twin challenge of hesitancy among those they are supposed to serve and the threat of major cuts to Medicaid, the federal program that provides over 60% of the funding for Medi-Cal.

Health providers and policy researchers say a loss in federal contributions could lead the state to roll back or downsize some programs, including the expansion to cover those without legal authorization.

California and Oregon are the only states that offer comprehensive health insurance to all income-eligible immigrants regardless of status. About 1.5 million people without authorization have enrolled in California, at a cost of over $6 billion a year to state taxpayers.

“Everyone wants to put these types of services on the chopping block, which is really unfair,” said state Sen. Lena Gonzalez, a Democrat and chair of the California Latino Legislative Caucus. “We will do everything we can to ensure that we prioritize this.”

Sen. Gonzalez said it will be challenging to expand programs such as Covered California, the state’s health insurance marketplace, for which immigrants lacking permanent legal status are not eligible. A big concern for immigrants and their advocates is that Trump could reinstate changes to the public charge policy, which can deny green cards or visas based on the use of government benefits.

“President Trump’s mass deportation plan will end the financial drain posed by illegal immigrants on our healthcare system, and ensure that our country can care for American citizens who rely on Medicaid, Medicare, and Social Security,” Trump spokesperson Karoline Leavitt said in a statement to KFF Health News.

During his first term, in 2019, Trump broadened the policy to include the use of Medicaid, as well as housing and nutrition subsidies. The Biden administration rescinded the change in 2021.

KFF, a health information nonprofit that includes KFF Health News, found immigrants use less health care than people born in the United States. And about 1 in 4 likely undocumented immigrant adults said they have avoided applying for assistance with health care, food, and housing because of immigration-related fears, according to a 2023 survey.

Another uncertainty is the fate of the Affordable Care Act, which was opened in November to immigrants who were brought to the U.S. as children and are protected by the Deferred Action Childhood Arrivals program. If DACA eligibility for the act’s plans, or even the act itself, were to be reversed under Trump, that would leave roughly 40,000 California DACA recipients, and about 100,000 nationwide, without access to subsidized health insurance.

On Dec. 9, a federal court in North Dakota issued an order blocking DACA recipients from accessing Affordable Care Act health plans in 19 states that had challenged the Biden administration’s rule.

Clinics and community health workers are encouraging people to continue enrolling in health benefits. But amid the push to spread the message, the chilling effects are already apparent up and down the state.

“¿Ya tiene Medi-Cal?” community health worker Yanet Martinez said, asking residents whether they had Medi-Cal as she walked down Pico Boulevard recently in a Los Angeles neighborhood with many Salvadorans.

“¡Nosotros podemos ayudarle a solicitar Medi-Cal! ¡Todo gratuito!” she shouted, offering help to sign up, free of charge.

“Gracias, pero no,” said one young woman, responding with a no thanks. She shrugged her shoulders and averted her eyes under a cap that covered her from the late-morning sun.

Since Election Day, Martinez said, people have been more reluctant to hear her pitch for subsidized health insurance or cancer prevention screenings.

“They think I’m going to share their information to deport them,” she said. “They don’t want anything to do with it.”

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

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

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LOS ÁNGELES, California.— La promesa del presidente electo Donald Trump de deportaciones masivas y restricciones migratorias más severas está aumentando la desconfianza en el sistema de salud entre los inmigrantes en California, y nublando el futuro de los proveedores que atienden a los residentes más empobrecidos del estado.

Al mismo tiempo, inmigrantes que viven en el sur de California sin papeles dijeron a KFF Health News que pensaban que la economía mejoraría y que sus ingresos podrían aumentar bajo Trump. Para algunos, esa esperanza supera a sus preocupaciones sobre la atención de salud.

Trabajadores comunitarios de salud dicen que el miedo a la deportación ya está afectando la participación en Medi-Cal, el programa de Medicaid del estado para residentes de bajos ingresos, que en los últimos años se ha estado expandiendo gradualmente a todos los inmigrantes, independientemente de su estatus migratorio. Esto podría socavar el progreso del estado en la reducción de la tasa de personas sin seguro, que alcanzó un mínimo histórico del 6.4% en 2023.

Los inmigrantes sin papeles han temido durante mucho tiempo que participar en programas gubernamentales los convierta en blanco fácil de las autoridades migratorias, y la elección de Trump ha exacerbado estas preocupaciones, según defensores comunitarios.

Se espera que Medicaid esté en la mira de la nueva administración Trump, con recortes de fondos y restricciones de inscripción, lo que preocupa a activistas, ya que podría amenazar la expansión de Medi-Cal y obstaculizar los esfuerzos para extender los subsidios que ayudan a pagar por los seguros de salud bajo Covered California a todos los inmigrantes.

“El miedo por sí solo tiene tantas consecuencias para la salud de nuestras comunidades”, dijo Mar Vélez, directora de políticas de la Latino Coalition for a Healthy California. “Como ellos dicen, esta no es su primera batalla. Entienden cómo funciona el sistema. Creo que esta maquinaria será, desafortunadamente, mucho más dañina para nuestras comunidades”.

A pesar de estas preocupaciones, también hay una corriente de optimismo de que Trump podría beneficiar a la economía, según entrevistas con inmigrantes en Los Ángeles mientras trabajadores de salud estaban invitándolos a inscribirse en Medi-Cal.

Selvin, de 39 años, quien, como otros entrevistados para este artículo, pidió ser identificado solo por su primer nombre porque no tiene papeles, dijo que aunque cree que a Trump no le gustan las personas como él, piensa que la nueva administración podría ayudar a aumentar sus horas en la planta procesadora de alimentos donde trabaja empacando fideos. “Sí veo cómo podría mejorar la economía. Desde esa perspectiva, creo que es bueno que haya ganado”.

Este año, Selvin se convirtió en elegible para Medi-Cal, pero decidió no inscribirse, preocupado de que pudiera poner en peligro sus posibilidades de cambiar su estatus migratorio.

“Lo he pensado”, dijo Selvin, pero “siento que podría terminar perjudicándome. No negaré que, obviamente, me gustaría beneficiarme: arreglarme los dientes, un chequeo físico”. Pero dijo que el miedo lo frena, y no ha visto a un médico en nueve años.

No es el plan de deportación masiva de Trump en particular lo que lo asusta, sin embargo. “Si no estoy cometiendo ningún crimen o manejando ebrio, creo que no me deportarán”, dijo Selvin.

Petrona, de 55 años, vino de El Salvador buscando asilo y se inscribió en Medi-Cal el año pasado.

Dijo que si se recortan sus beneficios de salud, no podría costear sus visitas al dentista.

Vendedora ambulante de comida, escucha a menudo sobre el plan de deportación de Trump, pero dijo que el nuevo presidente expulsará a los criminales. “He oído decir que va a deshacerse de todos los que están robando”.

Aunque teme que pudiera ser deportada, también tiene esperanza en Trump. “Dice que va a dar mucho trabajo a los hispanos porque los latinos son los que trabajan más duro”, dijo. “Eso es bueno, más trabajo para nosotros, los que vinimos aquí a trabajar”.

El recién electo asambleísta republicano Jeff Gonzalez, quien ganó un escaño históricamente demócrata en la región desértica del sureste del estado, con una gran población latina, dijo que sus electores estaban ansiosos por ver un nuevo rumbo económico.

“Están realmente cansados del statu quo en California”, dijo Gonzalez. “La gente en las calles está diciendo: ‘Tengo esperanza’, porque ahora tenemos una perspectiva diferente. Tenemos a un empresario que está viendo las mismas cosas que nosotros estamos viendo, como el precio de los huevos, el precio de la gasolina, la seguridad”.

Gonzalez dijo que no comentará sobre posibles recortes a Medicaid porque Trump no ha hecho ningún anuncio oficial. A diferencia de la mayoría en su partido, Gonzalez aseguró que apoya la extensión de servicios de salud a todos los residentes, independientemente de su estatus migratorio.

Los proveedores de salud dijeron que enfrentan un doble desafío: la reticencia de las personas a las que deben atender y la amenaza de recortes importantes a Medicaid, el programa federal que proporciona más del 60% del financiamiento para Medi-Cal.

Proveedores de salud e investigadores de políticas dicen que una pérdida en las contribuciones federales podría llevar al estado a reducir o eliminar algunos programas, incluida la expansión para cubrir a quienes no tienen documentos.

California y Oregon son los únicos estados que ofrecen un seguro de salud integral a todos los inmigrantes elegibles, independientemente de su estatus. En California, se han inscrito cerca de 1.5 millones de personas sin papeles, a un costo de más de $6.000 millones al año para los contribuyentes del estado.

“Todo el mundo quiere poner este tipo de servicios en la lista de recortes, lo cual es realmente injusto”, dijo la senadora estatal Lena Gonzalez, demócrata y presidenta del Caucus Legislativo Latino de California. “Haremos todo lo posible para asegurarnos de que esto se priorice”.

La senadora Gonzalez dijo que será un desafío expandir programas como Covered California, el mercado de seguros de salud del estado, para el cual los inmigrantes sin estatus legal no son elegibles. Una gran preocupación para los inmigrantes y sus defensores es que Trump podría restablecer los cambios a la política de carga pública, que habilita para negar tarjetas de residencia o visas basándose en el uso de ciertos beneficios gubernamentales.

“El plan de deportación masiva del presidente Trump pondrá fin al drenaje financiero que representan los inmigrantes ilegales para nuestro sistema de salud y garantizará que nuestro país pueda cuidar a los ciudadanos estadounidenses que dependen de Medicaid, Medicare y el Seguro Social”, dijo Karoline Leavitt, vocera de Trump, en un comunicado para KFF Health News.

Durante su primer mandato, en 2019, Trump amplió la política de carga pública para incluir el uso de Medicaid, así como subsidios de vivienda y para comprar alimentos. La administración Biden rescindió el cambio en 2021.

KFF, una organización sin fines de lucro de información sobre salud que incluye a KFF Health News, encontró que los inmigrantes usan menos servicios de salud que las personas nacidas en los Estados Unidos. Y aproximadamente 1 de cada 4 inmigrantes adultos probablemente indocumentados dijo que ha evitado solicitar asistencia para la atención de salud, alimentos y vivienda debido a temores relacionados con la inmigración, según una encuesta de 2023.

Otra incertidumbre es el destino de la Ley de Cuidado de Salud a Bajo Precio (ACA), que se expandió en noviembre a los inmigrantes traídos al país de niños y que están protegidos bajo el programa de Acción Diferida para los Llegados en la Infancia (DACA). Si la elegibilidad de DACA, y la misma ley, fuera revertida bajo Trump, eso dejaría a aproximadamente 40.000 beneficiarios de DACA en California, y alrededor de 100.000 en todo el país, sin acceso a seguros de salud subsidiados.

El 9 de diciembre, un tribunal federal en Dakota del Norte emitió una orden bloqueando el acceso de los beneficiarios de DACA a estos planes de salud en 19 estados que habían impugnado la regla de la administración Biden.

Clínicas y trabajadores comunitarios de salud están alentando a las personas a seguir inscribiéndose para obtener beneficios de salud. Pero en medio del esfuerzo por difundir el mensaje, los efectos disuasorios ya son evidentes a lo largo y ancho del estado.

“¿Ya tiene Medi-Cal?”, preguntaba la trabajadora comunitaria Yanet Martínez a los residentes mientras caminaba por Pico Boulevard recientemente, en un vecindario de Los Ángeles con muchos salvadoreños.

“¡Nosotros podemos ayudarle a solicitar Medi-Cal! ¡Todo gratuito!”, gritaba, ofreciendo ayuda para inscribirse sin costo.

“Gracias, pero no”, respondió una joven, encogiéndose de hombros y evitando el contacto visual bajo una gorra que la cubría del sol dela  media mañana.

Martínez dijo que desde el día de las elecciones, la gente ha estado más reacia a escuchar lo que dice sobre seguros de salud subsidiados o exámenes preventivos de cáncer.

“Creen que voy a compartir su información para deportarlos”, dijo. “No quieren tener nada que ver con esto”.

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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In the past few years, state and local governments across the U.S. have begun spending billions in opioid settlements paid by companies accused of fueling the overdose crisis. But where is that money going, who is getting it, and is it doing any good?

KFF Health News, partnering with the Johns Hopkins Bloomberg School of Public Health and Shatterproof, a national nonprofit focused on addiction, undertook a yearlong investigation to find out.

Dozens of interviews, thousands of pages of documents, an array of public records requests, and outreach to all 50 states resulted in a first-of-its kind database that catalogs more than 7,000 ways opioid settlement cash was used in 2022 and 2023. It’s the most comprehensive resource to date tracking some of the largest public health settlements in American history.

Among the findings:

• States and localities received more than $6 billion in opioid settlement funds in 2022 and 2023. According to public records, they spent or committed about a third of that amount and set aside about another third for future use. The final third was untrackable, as many jurisdictions did not produce public reports on the funds.
• Reports of spending tracked the minuscule to the monumental, from $11.74 to buy postage in Yavapai County, Arizona, to more than $51 million to increase the addiction treatment workforce in California.
• States allotted, on average, about 18% of their funds for addiction and mental health treatment; 14% for recovery services such as housing, transportation, and legal aid; 11% for harm reduction efforts such as overdose reversal medications; and 9% for prevention programs that aim to stop people from developing substance use disorders. States committed, on average, about 2% for syringe service programs, through which people can get sterile needles. (A variety of entities received this money, from law enforcement to nonprofit organizations to government agencies.)
• Governments reported spending more than $240 million on purposes that did not qualify as opioid remediation. (Most settlements allow states to spend up to 15% of their funds this way.) Most of this tranche went to legal fees, but several jurisdictions funneled money to their general fund. One county even sent funds to its road and bridge department.
• Several cities and counties reported expenditures they said addressed the overdose crisis but that would leave an average person scratching their head — such as $33.07 to an anti-abortion pregnancy center in Sandborn, Indiana, and $30,362 to screen first responders for heart disease in Oregon City, Oregon.

“When people know that people aren’t watching and there’s no accountability, then they can kind of do what they want,” said Tonja Myles, a community activist in Baton Rouge, Louisiana, who is in recovery. “That’s why we have to have some kind of database and accountability.”

Despite the recent decline in overall overdose deaths in the U.S., more than 90,000 people still died in the 12 months ending July 2024 and rates are rising in many Black and Native American communities.

“We can’t mess up or miss this moment,” Myles said.

Opioid settlement payouts are expected to total about $50 billion over nearly two decades, paid by more than a dozen companies that made or distributed prescription painkillers, including Johnson & Johnson, Walgreens, and Walmart. Although it’s a large sum, it’s dwarfed by the size of the crisis, making each dollar that’s spent critical.

KFF Health News and its partners reviewed hundreds of settlement spending reports, extracting expenditures line by line, and developed a methodology to sort the expenditures into categories like treatment or prevention. States were given an opportunity to review the data and comment on their spending.

To be sure, the database does not capture the full picture of opioid settlement spending nationwide. Some places do not publish spending reports, while others declined to engage with this project. The data presented here is a snapshot as of the end of 2023 and does not account for further spending in 2024. The differences in how states control, process, and report on the money make apples-to-apples comparisons nearly impossible. Still, the database helps fill a gap left by a lack of national reporting requirements and federal government inaction.

It is “a tool for those who want to objectively measure whether everything that can be done is being done,” said Matthew Myers, a former president of the Campaign for Tobacco-Free Kids, which compiles similar annual reports on tobacco settlement money.

Treatment a Clear Winner

The top priority to emerge from early opioid settlement spending was treatment, with more than $416 million spent or committed to residential rehabs, outpatient counseling, medications for opioid use disorder, and more.

The state of New York — which spent the most on treatment — allocated about $22 million of that for programs that make the gold standard for care as easy as possible for patients: providing same-day prescriptions for buprenorphine, a medication that decreases cravings for opioids.

The result was a program that John Greene said changed his life.

Greene, 57, used to live in the woods down the street from Family & Children’s Counseling Services in Cortland, New York. He cycled through jails and hospitals, overdosing half a dozen times and trying rehab just as many.

But now he has four months of recovery under his belt — the longest stint since he started regularly using drugs at 14.

He said it’s because the counseling center’s new program — funded by a mix of state and local opioid settlement dollars — has a different approach. Counselors aren’t didactic and judgmental. They don’t force him to stop smoking marijuana. Several staff members have experienced addiction themselves. They drive Greene, who doesn’t have a car, to doctor appointments and the pharmacy for his buprenorphine prescription.

Now Greene lives and works with his brother, looks forward to weekly counseling sessions, and is notching small victories — such as buying his nephew toy cars as a stocking stuffer.

“It made me feel good to do something for somebody and not expect nothing back,” Greene said.

Emily Georgia, one of Greene’s counselors, said the center has worked with nearly 200 people like him in the past year. Without the settlements, “the program probably wouldn’t exist,” she said.

Across the country, the money supports other innovative treatment approaches:

• $21 million for a new program in Kentucky that diverts people with mental illness or addiction who face low-level charges away from incarceration and into treatment, education, and workforce training
• More than $3 million for, in part, three new mobile methadone programs in Massachusetts, to bring the medication to rural and underserved areas
• Tens of thousands of dollars each in Iowa and Pennsylvania to cover out-of-pocket treatment costs for people without insurance or those with high deductibles

Philip Rutherford, an expert on substance use disorder at the National Council for Mental Wellbeing, said these efforts “are really positive” and many have been “historically difficult or impossible to achieve with federal or state funding.”

But some funds are also flowing to treatment approaches that defy best practices, such as denying people medications for opioid use disorder.

Some in the recovery community consider methadone and buprenorphine a crutch. But study after study show that the medications help people stay in treatment and reduce the risk of overdose and death. Research even suggests that treatment without these medications can be more harmful than no treatment at all.

Although not everyone will want medication, settlement funds shouldn’t “prop up a system that doesn’t allow people to have that choice,” said Regina LaBelle, a professor of addiction policy at Georgetown University.

Babies, Forgotten Victims of the Epidemic

While treatment received a windfall in early opioid settlement spending, another aspect of the crisis was neglected: neonatal abstinence syndrome, a condition in which babies exposed to drugs in the womb experience withdrawal.

Nationwide, more than 59 newborns a day are diagnosed with it. Yet only about $8.4 million in settlement money was committed to the issue — less than 0.5% of all funds publicly reported as spent or committed in 2022 and 2023.

Experts in public health and addiction, as well as affected families, say it’s due to stigma.

“A mom using drugs and being a parent is a very uncomfortable reality to face,” said Ashley Grant, a 38-year-old mother of three in Mesa, Arizona. “It’s easier to just push it under the rug or let them fall through the cracks, as sad as that is.”

It almost happened to her.

Grant learned she was pregnant with her third child last year. At the time, her partner was in jail and she was using drugs after an eight-year period of recovery, was estranged from her family, and didn’t know how she’d survive the next nine months.

During a visit to a methadone clinic, she saw a booth about Jacob’s Hope, a specialty nursery that cares for substance-exposed newborns and their moms. Nursery staff connected her with a therapist, helped her enroll in parenting classes, and dropped off diapers and a playpen at her home.

After delivering at the hospital, Grant and her baby boy stayed at Jacob’s Hope for about a week. Nurses showed her how skin-to-skin contact calmed his withdrawal symptoms and more frequent feedings and burpings decreased gastrointestinal discomfort, which is common among substance-exposed newborns.

Today, Grant has roughly five months of recovery. She got certified as a peer recovery specialist and hopes to join Jacob’s Hope one day to help moms like her.

But the nursery’s future is uncertain.

After opening in 2019, Jacob’s Hope nearly shut down this summer due to low reimbursements and delayed payments from insurers, said Lyndsey Steele, its associate director. Community donations kept the nursery afloat, but “it’s still hanging on by a thread,” she said.

She’s hoping opioid settlement money can help.

In 2022, Jacob’s Hope received about $250,000 from Arizona’s opioid settlements. But this year, the legislature captured the state’s share of remaining funds and, in a controversial move, gave it to the Department of Corrections.

Jacob’s Hope has now turned to local governments, which control their own settlement dollars. Its home city of Mesa said a first round of grant applications should open in the spring.

Steele prays it won’t be too late for babies in need — the epidemic’s “forgotten victims,” she called them.

Heart Disease Screening, Robot Ambulances, and More

Some opioid settlement expenditures have sparked fierce disagreement. They generally fall into three buckets: money for law enforcement, funding for youth prevention programs, and purchases unrelated to the opioid crisis.

Settlement dollars nationwide have bought body scanners, K-9 units, bulletproof vests, patrol trucks, and laptops and printers for police and sheriffs.

Some spending strayed even further from the spirit of the settlement. In Oregon City, Oregon, more than $30,000 was spent on screening first responders for heart disease. Police Chief Shaun Davis said his staff respond to opioid-related emergencies and experience trauma that increases their risk of heart attack.

But some people question if settlement funds should be footing the bill.

“This looks to me like you’re trying to defray other costs” from the police budget, said Stephen Loyd, chair of Tennessee’s Opioid Abatement Council. “I don’t think that there’s any way that this opioid money was earmarked for stuff like that.”

A second area of contention is youth prevention.

Although most people agree that stopping children from developing addictions is important, the execution is tricky.

Nearly half a million settlement dollars have gone to the Drug Abuse Resistance Education program, commonly known as D.A.R.E. Decades of research suggest its original curriculum is ineffective.

Robeson County, North Carolina, spent about $10,000 in settlement money to buy “Andy the Ambulance,” a robot ambulance with big eyes and an audio system through which a human operator can discuss the dangers of drugs. EMS Director Patrick Cummings said his team has taken the robot to churches and elementary schools.

We “don’t have any studies that show it’s working,” he said, but educating kids seems like a good investment because “if they never try it, they don’t get addicted.”

Then there’s the chunk of money — up to 15% of each state’s funds — that’s a free-for-all.

Flint, Michigan, spent nearly $10,000 on a sign for a community service center. The city reported that the expense did not qualify as “opioid remediation.” In other words, it’s unrelated to addressing the crisis.

But Caitie O’Neill, a city spokesperson, said that “the building sign makes it possible for residents to find” the center, which houses city services, “including Narcan kits, fentanyl testing strips, and substance abuse referrals.”

Jurisdictions across 29 states reported non-remediation spending in 2022 and 2023. Most opioid settlements require such reports but operate on an honor system. No one is checking if the other 21 states and Washington, D.C., were truthful.

Jackie Lewis, an Ohio mother whose 34-year-old son, Shaun, died of an overdose in October 2022, finds that hard to stomach.

“This is blood money,” she said. Some people have “lost sight of that.”

Lewis is raising Shaun’s daughter, ensuring the 9-year-old receives counseling at school and can attend the hip-hop music classes she enjoys — all on Lewis’ Social Security payments. This year they moved to a smaller town with lower costs.

As settlement funds continue flowing, she wants officials in charge of the money to help families like hers.

“We still exist and we’re still struggling,” she said.

KFF Health News’ Henry Larweh and Megan Kalata, Johns Hopkins Bloomberg School of Public Health’s Sara Whaley and Vivian Flanagan, and Shatterproof’s Kristen Pendergrass and Sahvanah Prescott contributed to this article.

The Johns Hopkins Bloomberg School of Public Health has taken a leading role in providing guidance to state and local governments on the use of opioid settlement funds. Faculty from the school collaborated with other experts in the field to create principles for using the money, which have been endorsed by over 60 organizations.

Shatterproof is a national nonprofit that addresses substance use disorder through distinct initiatives, including advocating for state and federal policies, ending addiction stigma, and educating communities about the treatment system.

Shatterproof is partnering with some states on projects funded by opioid settlements. KFF Health News, the Johns Hopkins Bloomberg School of Public Health, and the Shatterproof team who worked on this report are not involved in those efforts.

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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Tescha Hawley learned that hospital bills from her son’s birth had been sent to debt collectors only when she checked her credit score while attending a home-buying class. The new mom’s plans to buy a house stalled.

Hawley said she didn’t owe those thousands of dollars in debts. The federal government did.Hawley, a citizen of the Gros Ventre Tribe, lives on the Fort Belknap Indian Reservation in Montana. The Indian Health Service is a federal agency that provides free health care to Native Americans, but its services are limited by a chronic shortage of funding and staff.

Hawley’s local Indian Health Service hospital wasn’t equipped to deliver babies. But she said staff there agreed that the agency would pay for her care at a privately owned hospital more than an hour away.

That arrangement came through the Purchased/Referred Care program, which pays for services Native Americans can’t get through an agency-funded clinic or hospital. Federal law stresses that patients approved for the program aren’t responsible for any of the costs.

But tribal leaders, health officials, and a new federal report say patients are routinely billed anyway as a result of backlogs or mistakes from the Indian Health Service, financial middlemen, hospitals, and clinics.

The financial consequences for patients can last years. Those sent to collections can face damaged credit scores, which can prevent them from securing loans or require them to pay higher interest rates.

The December report, by the federal Consumer Financial Protection Bureau, found these long-standing problems contribute to people in Native American-majority communities being nearly twice as likely to have medical debt in collections compared with the national average. And their amount of medical debt is significantly higher.

The report found the program is often late to pay bills. In some cases, hospitals or collection agencies hound tribal citizens for more money after bills are paid.

Hawley’s son was born in 2003. She had to wait another year to buy a home, as she struggled to pay off the debt. It took seven years for it to drop from her credit report.

“I don’t think a person ever recovers from debt,” Hawley said.

Hawley, a cancer survivor, still must navigate the referral program. In 2024 alone, she received two notices from clinics about overdue bills.

Frank White Clay, chairman of the Crow Tribe in Montana, testified about the impact of wrongful billing during a U.S. House committee hearing in April. He shared stories of veterans rejected for home loans, elders whose Social Security benefits were reduced, and students denied college loans and federal aid.

“Some of the most vulnerable people are being harassed daily by debt collectors,” White Clay said.

No one is immune from the risk. A high-ranking Indian Health Service official learned during her job’s background check that her credit report contained referred-care debt, the federal report found.

Native Americans face disproportionately high rates of poverty and disease, which researchers link to limited access to health care and the ongoing impact of racist federal policies.

White Clay is among many who say problems with the referred-care program are an example of the U.S. government violating treaties that promised to provide for the health and welfare of tribes in return for their land.

The chairman’s testimony came during a hearing on the Purchased and Referred Care Improvement Act, which would require the Indian Health Service to create a reimbursement process for patients who were wrongfully billed. Committee members approved the bill in November and sent it for consideration by the full House.

A second federal bill, the Protecting Native Americans’ Credit Act, would prevent debt like Hawley’s from affecting patients’ credit scores. The bipartisan bill hadn’t had a hearing by mid-December.

The exact number of people wrongfully billed isn’t clear, but the Indian Health Service has acknowledged it has work to do.

The agency is developing a dashboard to help workers track referrals and to speed up bill processing, spokesperson Brendan White said. It’s also trying to hire more referred-care staff, to address vacancy rates of more than 30%.

Officials say problems with the program also stem from outside health providers that don’t follow the rules.

Melanie Egorin, an assistant secretary at the U.S. Department of Health and Human Services, said at the hearing that the proposed legislation doesn’t include consequences for “bad actors” — health facilities that repeatedly bill patients when they shouldn’t.

“The lack of enforcement is definitely a challenge,” she said.

But tribal leaders warned that penalties could backfire.

White Clay told lawmakers that some clinics already refuse to see patients if the Indian Health Service hasn’t paid for their previous appointments. He’s worried the threat of penalties would lead to more refusals.

If that happens, White Clay said, Crow tribal members who already travel hours to access specialty treatment would have to go even farther.

The Consumer Financial Protection Bureau report found clinics are already refusing to see any referred-care patients due to the program’s payment problems.

The bureau and the Indian Health Service also recently published a letter urging health care providers and debt collectors not to hold patients accountable for program-approved care.

White, the Indian Health Service spokesperson, said the agency recently updated the referred-care forms sent to outside hospitals and clinics to include billing instructions and to stress that patients aren’t liable for any out-of-pocket costs. And he said the staff can help patients get reimbursed if they have already paid for services that were supposed to be covered.

Joe Bryant, an Indian Health Service official who oversees efforts to improve the referral program, said patients can ask credit bureaus to remove debt from their reports if the agency should have covered their bills.

Leaders with the Confederated Tribes of the Colville Reservation in Washington state helped shape the proposed legislation after their citizens were repeatedly harmed by wrongful billing.

Tribal Chairman Jarred-Michael Erickson said problems began in 2017, when a regional Indian Health Service office took over the referred-care program from local staff.

It “created a domino effect of negative outcomes,” Erickson wrote in a letter to Congress.

He said some tribal members whose finances were damaged stopped using the Indian Health Service. Others avoided health care altogether.

Responsibility for the Colville Reservation program transferred back to local staff in 2022. Staffers found the billing process hadn’t been completed for thousands of cases, worth an estimated $24 million in medical care, Erickson told lawmakers.

Workers are making progress on the backlog and they have explained the rules to outside hospitals and clinics, Erickson said. But he said there are still cases of wrongful billing, such as a tribal member who was sent to collections after receiving a $17,000 bill for chemotherapy that the agency was supposed to pay for.

Erickson said the tribe is in the process of taking over its health care facilities instead of having the Indian Health Service run them. He and others who work in Native American health said tribally managed units — which are still funded by the federal agency — tend to have fewer problems with their referred-care programs.

For example, they have more oversight over staff and flexibility to create their own payment tracking systems.

But some Native Americans oppose tribal management because they feel it releases the federal government from its obligations.

Beyond wrongful billing, access to the referred-care program is limited because of underfunding from Congress. The $1 billion budget this year is $9 billion short of the need, according to a committee report by tribal health and government leaders.

Donald Warne, a physician and member of the Oglala Sioux Tribe in South Dakota, called the proposed legislation a “band-aid.” He said the ultimate solution is for Congress to fully fund the Indian Health Service, which would reduce the need for the referred-care program.

Back in Montana, Hawley said she braces for a fight each time she gets a bill that the referral program was supposed to cover.

“I’ve learned not to trust the process,” Hawley said.

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

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ERWIN, Tenn. — April Boyd texted her husband before she boarded the helicopter.

“So, I don’t want to be dramatic,” she wrote on Sept. 27, “but we are gonna fly and rescue patients from the rooftop of Unicoi hospital.”

Earlier that day, Hurricane Helene roared into the Southern Appalachian Mountains after moving north through Florida and Georgia. The storm prompted a deadly flash flood that tore through Unicoi County in eastern Tennessee, trapping dozens of people on the rooftop of the county hospital.

The fast-moving floodwaters had made earlier rescue attempts by ambulance and boat impossible. Trees, trailers, buildings, caskets, and cars swept past the hospital in murky, brown rapids that overwhelmed the one-story structure with 12 feet of water on all sides.

No one knew how long the hospital’s frame would hold or if the rising water would breach the top of the 20-foot-tall building. Little more than a mile downstream, six people at a plastics plant in Erwin’s industrial park died in the flood.

“I do not feel good about this,” Boyd, a flight nurse for Ballad Health, texted her husband at 1:41 p.m., just before takeoff.

She wrote that she loved him. “If anything goes wrong,” she wanted him to tell her daughters “how much I love them,” too.

Her fears were well-founded.

In 2018, Unicoi County Hospital relocated from higher ground in the heart of Erwin to the southern edge of town, between Interstate 26 and the Nolichucky River. The new hospital was built in a known flood plain, but the facility wasn’t designed to accommodate helicopter landings on its roof. Boyd and her team weren’t sure the roof could bear the weight of their 7,200-pound Eurocopter in good weather, let alone during a flash flood.

“I had a horrible feeling about it,” she said.

By many accounts, the evacuation of 70 people, including 11 patients, by helicopter that day was a stunning success. The hospital was destroyed, but no one died. No one was even physically injured by the ordeal.

Yet, earth scientists, emergency management officials, and others who spoke to KFF Health News describe the narrow escape from Unicoi County Hospital as a cautionary tale. As climate change forces health care leaders and public officials to prepare for severe storms in landlocked parts of the country — where residents haven’t historically paid much attention to hurricane warnings — they must be strategic about both the infrastructure design and the locations selected for new projects, like hospitals.

The Biden administration finalized a rule this year designed to make the construction of such projects that receive funding from the Federal Emergency Management Agency more resilient to flooding. But a review by KFF Health News identified about 20 other Tennessee hospitals already built in, or near, flood plains.

Patrick Sheehan, director of the Tennessee Emergency Management Agency, said past weather patterns can lull people into a false sense of security. But, he added, “past is not always prologue. We’re going to experience novel, new ways of having disasters.”

Historically, the Southern Appalachian Mountains have been the place “where hurricanes go to die,” said Ryan Thigpen, an earth and environmental sciences professor at the University of Kentucky whose research focuses on flooding in the region. But as the Gulf of Mexico becomes warmer and storms, like Helene, that move northward into the mountains carry more moisture, weather events will become more severe.

“It’s apocalyptic,” said Thigpen, of the damage in Erwin. “The next storm may come before they are finished recovering from this. And that’s kind of scary.”

Hospitals in Flood Plains

All week, Michelle Matson had been worried about Unicoi County Hospital in the oncoming storm.

As a district coordinator for the Tennessee Emergency Management Agency, Matson works with local officials to plan for worst-case scenarios.

Leading up to Hurricane Helene, she’d been in regular communication with the county’s emergency management director. The hospital’s vulnerability next to the river kept coming up.

“That was the only place we were worried about,” Matson said.

But concern over the hospital’s location wasn’t new.

In November 2013, Unicoi County Memorial Hospital, which opened in 1953, was acquired by Mountain States Health Alliance on the condition that Mountain States would construct a hospital in Erwin to replace the old one.

Two years later, Mountain States purchased a 45-acre tract of land next to a bend in the Nolichucky River, just off Interstate 26. A hospital system press release at the time explained that due diligence had been conducted to ensure, among other things, that the hospital building would not be in a flood plain. It also presented the location as desirable because it was near the interstate and the landscape would provide “a healing environment by taking advantage of the natural beauty of Unicoi County, with the river running along the east side of the property.”

Dating back decades, though, flood maps published by FEMA put the entire property in a flood plain. The building itself was in a 500-year flood plain (meaning a 0.2% chance of flooding in any given year), while the only road on and off the property was in a 100-year flood plain (meaning a 1% annual risk).

But it wasn’t only FEMA maps that forecast this possibility. In 2001, a report published by Unicoi County marked this land as being in a “flood hazard” area. The report warned of “considerable pressure” to develop flood hazard areas across the county “due to population increase and the need for vacant land.”

The same report acknowledged a history of destructive flooding in the county and the risks it faced being situated along “three major streams,” including the Nolichucky River, which flows northward out of the Blue Ridge Mountains of western North Carolina straight through Erwin.

“If you start looking at the river’s history, there are a number of these notable flood events, and quite a few in the 20th century. They just did not reach this magnitude,” said Philip Prince, a geologist with Appalachian Landslide Consultants. His YouTube videos about mountain flooding during Helene have been viewed hundreds of thousands of times. “People should have been expecting more than they did. But again, we have not seen anything like this.”

Matthew Rice, a former Unicoi County commissioner, served as chair of the Hospital Visioning Committee for the new hospital in 2015. He said some committee members raised questions during the planning process about the location, but he conceded there weren’t many large, flat places to build a hospital in Erwin.

Amid a wave of rural hospital closures across the United States, Erwin residents celebrated when the new hospital opened in 2018. One lawmaker told the Johnson City Press it was “the most modern facility on the planet.”

Alan Levine was CEO of Mountain States Health Alliance during that time and later became the head of Ballad Health, when Mountain States merged with a competing hospital system in 2018 to form the largest state-sanctioned hospital monopoly in the country.

Levine said Mountain States was aware the property carried flood risk but noted that the hospital system added levees to protect the building from river flooding at the recommendation of outside consultants. One levee already existed along the river’s edge. And the hospital itself was deliberately constructed on a high point of the land, at the same elevation as the interstate, Levine said.

“I feel like everything we did when we built it was done the right way,” said Levine, a former health care leader in Louisiana and Florida.

Even so, Matson, who lives in Kingsport, about 45 minutes northwest of Erwin, said some residents were quietly critical of the new hospital’s location.

“We all thought that it was a stupid idea to build a hospital in a flood plain. It’s like, who does that?” Matson said. She said her opinion doesn’t represent an official position of the Tennessee Emergency Management Agency.

But Unicoi isn’t the only Tennessee hospital built in a flood plain. Eight others across the state were built in moderate- or high-risk flood zones, and a dozen other hospitals are situated just outside them, KFF Health News found.

The hospitals at risk span the length of the state, from Memphis on the western edge to Knoxville in the east, and include big-city general hospitals, smaller rural hospitals, and behavioral health facilities.

Some of the hospitals are decades old. Parkridge East Hospital in Chattanooga, for example, was built in the 1970s inside a high-risk flood zone. Others are more recent — like Creekside Behavioral Health in Kingsport. That building, which opened in 2018, straddles high- and moderate-risk flood zones.

Then there are facilities like Pinewood Springs in Columbia. The 60-bed mental health facility, which opened in 2020, is in a low-risk area, but the main road leading in and out of the hospital lies in a high-risk flood area.

To identify these hospitals, KFF Health News looked for licensed facilities in or near areas that, according to FEMA, have either a high flood risk (with a 1-in-100 chance of flooding in any given year) or moderate risk (a 1-in-500 chance in any given year).

But FEMA’s maps likely underestimate the true flood risk, researchers and government watchdogs agree, because they’re largely outdated and don’t account for current or future conditions, including more frequent and more intense storms and flooding associated with climate change.

Those maps are updated on an ongoing but slow and piecemeal basis. Meanwhile, the federal regulation finalized this year to expand areas considered at risk for current and future flooding also sets more stringent building standards for critical infrastructure projects located in 100-year flood plains and funded by federal taxpayers.

The rule became effective on Sept. 9, less than three weeks before Hurricane Helene ravaged the Southern Appalachians, but it is unclear whether the incoming Trump administration will preserve it.

After he took office in 2017, President Donald Trump revoked federal flood protection standards set up under the Obama administration. Karoline Leavitt, a spokesperson for the incoming Trump administration, did not respond to emailed questions for this article.

An ‘Antiquated and Broken’ System

On Sept. 24, three days before the hospital evacuation, the National Hurricane Center issued the first of several warnings predicting significant river flooding and landslides in the Southern Appalachians. Two days before the flood in Erwin, a satellite office of the National Weather Service in Morristown, Tennessee, predicted “life-threatening flash flooding” near the Tennessee-North Carolina state line.

The warnings kept coming. The National Weather Service in upstate South Carolina forecast on Sept. 26, a Thursday, that Helene would amount to one of the region’s most significant weather events “in the modern era.”

“I don’t think people knew what that meant,” said Prince, the geologist. “We just didn’t have a precedent.”

Ballad Health didn’t anticipate that Unicoi would flood during the storm, Levine said, even though a hazard vulnerability assessment conducted annually for the hospital identifies external flooding as the second-highest risk facing Unicoi County Hospital, behind only a civil disturbance. The same 2024 assessment rated the hospital’s preparedness for a flood as a “3” or “low,” the worst possible score.

But a document outlining the hospital’s emergency alert procedures makes no mention of flood risk. If anything, hospital leaders said they were anticipating a surge of patients during Hurricane Helene if Erwin and the surrounding area experienced widespread power outages.

“There was no conversation I had with anybody, anywhere about the risk of flooding before Friday morning,” Levine said.

The day before, Jennifer Harrah, the hospital’s administrator, had called a meeting to discuss the storm. Sean Ochsenbein, an emergency medicine physician and the hospital’s chief medical officer, recalled that the group gathered “just to kind of circle the wagons, make sure everybody was on the same page.”

Later that day, Harrah spoke to Unicoi County’s emergency management director. But “let me be very clear,” Ochsenbein said. “Nobody gave us — as Ballad or our hospital — any kind of indication that we would have floodwaters.”

And yet little more than 24 hours after their planning meeting, both Harrah and Ochsenbein were stranded on the hospital roof, literally praying to God for their rescue.

“I called my husband, and I called my sons,” Harrah said. “I told them that I loved them.”

One reason the impact of the storm seemed to catch people off guard was a disconnect between the strong warnings issued by the federal agencies and the low expectations that many people in the region, including Ballad Health leaders, had of the potential flood risk.

It was sunny outside when people were evacuated from the hospital roof, Thigpen pointed out. It had rained about 5 inches in Erwin over several days, but that was nothing compared with places in the North Carolina mountains that received more than 20 inches over the same period. Rainfall at those higher altitudes eventually drained into the rivers and streams that ultimately destroyed places like Erwin.

But residents in Unicoi County had no clue what was coming their way, Thigpen said, because there weren’t river gauges upstream to sound alarms about dangerous water levels.

“I think that our warning systems are antiquated and broken,” he said. “These people in Erwin have seen floods — and a lot of big floods — and it’s never been anywhere close to this.”

Tennessee state climatologist Andrew Joyner is one of several experts now calling for more river gauges to monitor water levels and a network of weather stations in every county designed to collect live precipitation data.

Thirty-eight states already operate similar systems, he said, estimating that setting up and staffing weather stations across Tennessee would cost less than $4 million in the first year.

But the state has failed to act before. Following a catastrophic flood in Waverly, Tennessee, that killed 20 people and destroyed hundreds of homes and businesses in 2021, the Tennessee General Assembly denied a $200 million request to relocate 14 public schools across the state that had been deemed vulnerable to future flooding.

‘Might Not Make It Back’

On the morning of the flood, Matson had stood with the county’s emergency management director behind Unicoi County Hospital and watched the rising river. “We both had this, like, sick feeling in our stomach that said we’ve got to evacuate,” she remembered. “I said to him, worse comes to worst, we evacuate, nothing happens. Just blame it on me.”

They made the call to start moving patients out of the hospital just before 9:45 a.m. Less than 30 minutes later, the river had breached its banks, cutting a new channel in front of the hospital and eliminating access to the only road on or off the property.

When an ambulance evacuation became untenable, the Tennessee Emergency Management Agency called in swift-water teams, specially designed to rescue people in turbulent waters. But the flash flood had become so violent and the river was so full of debris that the boats couldn’t safely carry patients away. Meanwhile, dangerous wind conditions prevented helicopters located to the east or west from immediately flying that morning to rescue everyone by air.

“To be honest, I really thought we may not make it back” from the rescue mission, Boyd, the flight nurse, said.

When the wind started to die down that afternoon, Virginia State Police deployed two helicopters to rescue patients. Eventually, three Black Hawk helicopters from the Tennessee National Guard assisted in the effort. Pilots were required to make multiple round trips between the hospital and the local high school to evacuate four or five people at a time who had been stranded by the flood. Some patients stranded in boats near the hospital were hoisted into helicopters, while those who were stranded on the roof were either carried onto the aircraft or climbed aboard while the helicopters lightly touched down on their skids.

As the afternoon wore on and the evacuation was nearing its completion, pilot Jeff Bush with the Virginia State Police said he learned that the hospital building was weakening. They weren’t sure how much longer it would hold.

“It was intense,” he said. “The fact that the building is still standing is, I think, kind of amazing.”

Ballad Health evacuated two other hospitals and one nursing home by ambulance within 24 hours of the flood in Erwin, but none of those sustained damage. Meanwhile, what’s left of Unicoi County Hospital stands next to the Nolichucky in a field of mud and displaced river rocks.

For now, Ballad Health has opened a temporary urgent care center and plans to establish an emergency department at the site of the former Unicoi County Memorial Hospital in downtown Erwin.

Levine said Ballad Health will eventually rebuild a full-service hospital, but he estimated the project would cost $50 million, roughly twice as much as it did in 2018. It remains unclear where it would be built.

Probably not in a flood plain, Levine said. “I would avoid it if I could.”

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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SACRAMENTO, California — Un número creciente de personas —muchas de ellas mayores y sin hogar— están muriendo de frío durante el invierno.

La hipotermia causada por la exposición a bajas temperaturas fue la causa principal, o que contribuyó,  a la muerte de 166 californianos el año pasado, más del doble que hace una década, según datos provisionales de certificados de defunción del Centro para el Control y Prevención de Enfermedades (CDC).

La tasa ajustada por edad de 3.7 muertes por millón de residentes en 2023 fue la más alta en el estado en al menos 25 años.

Las muertes por hipotermia también han aumentado a nivel nacional: cerca de 2,520 estadounidenses fallecieron el año pasado, un incremento de aproximadamente el 35% desde 2014, según datos provisionales de los CDC.

Fue aún peor en 2022 cuando hubo 3.500 muertes por hipotermia, muchas de ellas durante tormentas invernales brutales en gran parte del país en enero y diciembre.

El incremento de muertes por hipotermia está relacionado con el aumento en la falta de vivienda, especialmente en California, que tiene la población sin hogar más grande del país, dicen expertos.

Las personas sin techo son particularmente vulnerables a la hipotermia porque muchos adultos mayores y vulnerables viven en la calle, expuestos a las inclemencias del tiempo.

Los funcionarios del gobierno han respondido en gran medida a las muertes por hipotermia abriendo centros para que las personas sin hogar puedan quedarse en noches frías, pero los defensores dicen que se necesitan más viviendas permanentes y programas que prevengan la falta de hogar.

Sentado en un banco cerca del Capitolio estatal, Leon Winch dijo que tiene problemas para mantenerse abrigado a medida que se acerca el invierno. En noches frías y lluviosas, intenta encontrar lugares para estar seco, pero las áreas cubiertas a menudo son vigiladas por guardias de seguridad privados que lo sacan del lugar. La hipotermia a menudo ocurre en temperaturas frías por debajo de los 40 grados, pero también a temperaturas más cálidas, especialmente cuando llueve.

Funcionarios de la ciudad abren centros bajo ciertas condiciones, incluyendo cuando se prevé que las temperaturas nocturnas caigan por debajo de los 37 grados en dos o más días en un período de cinco días. Pero Winch dijo que no confía en la ciudad de Sacramento y no utiliza los centros de la ciudad incluso cuando las temperaturas se vuelven gélidas.

“No están haciendo nada excepto algo superficial”, dijo.

Según el Departamento de Acceso a la Atención Médica e Información de California, las personas sin hogar representaron el 18% de las hospitalizaciones y visitas a la sala de emergencias relacionadas con la hipotermia desde 2019 hasta 2023. Los californianos sin hogar representan casi el 0.5% de la población del estado, lo que sugiere que tienen unas 40 veces más probabilidades que otros de terminar en el hospital por hipotermia.

Los datos federales muestran que más de dos tercios de las 181,000 personas sin hogar del estado no tienen refugio. Y entre aquellos que mueren de hipotermia, un grupo ha sido particularmente afectado.

Los adultos mayores son los más susceptibles a la hipotermia, con personas de 55 años o más representando más de tres cuartas partes de las muertes por hipotermia en California entre 2021 y 2023, según datos de los CDC.

“Hay un aumento masivo en la población de personas mayores sin hogar”, dijo Margot Kushel, directora de la Benioff Homelessness and Housing Initiative de la Universidad de California en San Francisco. Según Kushel, la proporción de adultos solteros sin hogar mayores de 50 años en California ha aumentado del 11% en 1990 a casi el 50%.

Y a medida que ha aumentado el número de muertes por exposición al frío en el estado, también se ha elevado el número de muertes por exposición al calor en el verano. “Un clima cambiante, más extremos de temperatura, más lluvias intensas, las personas son mayores y, por lo tanto, incapaces de tolerarlo, por lo que se enferman mucho más rápido”, explicó Kushel.

La tendencia podría empeorar: se proyecta que la proporción de personas sin hogar mayores de 65 años se triplique en Estados Unidos entre 2017 y 2030, según investigadores de UCSF.

La tasa de mortalidad por hipotermia en California es más alta en sus condados rurales, montañosos y del norte, pero la mayoría de las muertes ocurren en centros urbanos.

La hipotermia fue la causa principal o contribuyente de muerte para 46 residentes del condado de Los Ángeles entre 2021 y 2023, el número más alto en el estado. Sin embargo, la tasa de mortalidad fue inferior al promedio estatal debido a la gran población del condado.

Santa Clara, San Francisco y Sacramento tuvieron las tasas más altas de muerte por hipotermia entre los condados más poblados del estado. La hipotermia fue la causa principal o contribuyente de 42 muertes en el condado de Santa Clara de 2021 a 2023, frente a 11 durante los tres años anteriores, según los CDC.

“Cada año estamos peor que el anterior”, dijo Shaunn Cartwright, defensora de las personas sin hogar en el condado de Santa Clara.

Cartwright dijo que los funcionarios locales no están proporcionando suficientes camas permanentes en los refugios para las personas sin hogar, y mucho menos suficientes camas temporales en noches frías. Es un problema que Kushel dijo es prevalente en todo el estado.

Michelle Jorden, jefa forense del condado de Santa Clara, dijo en un comunicado enviado por correo electrónico que no está segura de por qué están aumentando las muertes por hipotermia, pero está monitoreando la tendencia. Agregó que el condado ha enviado equipos de ayuda a los campamentos con suministros, ha establecido centros calefaccionados y emitido alertas de seguridad en condiciones climáticas severas.

El condado de Sacramento tuvo 34 muertes relacionadas con la hipotermia entre 2021 y 2023, frente a 20 muertes por hipotermia entre 2018 y 2020. Como en muchos lugares, Sacramento ha aplicado ordenanzas para personas sin hogar y realizado desalojos tras una decisión de la Corte Suprema de EE.UU. que otorga a las ciudades más autoridad para multar y sacar a las personas sin hogar de las calles.

Casi la mitad de los californianos sin hogar que no tienen refugio informan que las autoridades han confiscado sus pertenencias en algún momento, dijo Kushel.

Bob Erlenbusch, defensor de la Sacramento Regional Coalition to End Homelessness, dijo que muchas personas sin hogar tienen frío porque las autoridades locales han confiscado artículos como mantas, sacos de dormir y tiendas de campaña durante los desalojos.

“No se supone que se lleven las cosas de las personas”, dijo. “Se supone que deben etiquetarlas y almacenarlas, pero eso no paasa”.

Jennifer Singer, vocera de la ciudad de Sacramento, dijo que los trabajadores de la ciudad se comunican con los residentes sin hogar antes de eliminar los campamentos “para que puedan manejar sus pertenencias antes de que comience cualquier limpieza”.

Kushel dijo que la solución a largo plazo para el aumento de las muertes por hipotermia es evitar que las personas sigan quedándose sin techo y sacar de las calles a los que ya lo han perdido. Mientras tanto, agrego que las ciudades necesitan abrir más centros calefaccionados — y con aire acondicionado en verano — y asegurarse de que sean accesibles.

Phillip Reese es especialista en reportajes de datos y profesor asociado de periodismo en la Universidad Estatal de California-Sacramento.

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