In the dim basement of a Salt Lake City pharmacy, hundreds of amber-colored plastic pill bottles sit stacked in rows, one man’s defensive wall in a tariff war.

Independent pharmacist Benjamin Jolley and his colleagues worry that the tariffs, aimed at bringing drug production to the United States, could instead drive companies out of business while raising prices and creating more of the drug shortages that have plagued American patients for several years.

Jolley bought six months’ worth of the most expensive large bottles, hoping to shield his business from the 10% across-the-board tariffs on imported goods that President Donald Trump announced April 2. Now with threats of additional tariffs targeting pharmaceuticals, Jolley worries that costs will soar for the medications that will fill those bottles.

In principle, Jolley said, using tariffs to push manufacturing from China and India to the U.S. makes sense. In the event of war, China could quickly stop all exports to the United States.

“I understand the rationale for tariffs. I’m not sure that we’re gonna do it the right way,” Jolley said. “And I am definitely sure that it’s going to raise the price that I pay my suppliers.”

Squeezed by insurers and middlemen, independent pharmacists such as Jolley find themselves on the front lines of a tariff storm. Nearly everyone down the line — drugmakers, pharmacies, wholesalers, and middlemen — opposes most tariffs.

Slashing drug imports could trigger widespread shortages, experts said, because of America’s dependence on Chinese- and Indian-made chemical ingredients, which form the critical building blocks of many medicines. Industry officials caution that steep tariffs on raw materials and finished pharmaceuticals could make drugs more expensive.

“Big ships don’t change course overnight,” said Robin Feldman, a UC Law San Francisco professor who writes about prescription drug issues. “Even if companies pledge to bring manufacturing home, it will take time to get them up and running. The key will be to avoid damage to industry and pain to consumers in the process.”

Trump on April 8 said he would soon announce “a major tariff on pharmaceuticals,” which have been largely tariff-free in the U.S. for 30 years.

“When they hear that, they will leave China,” he said. The U.S. imported $213 billion worth of medicines in 2024 — from China but also India, Europe, and other areas.

Trump’s statement sent drugmakers scrambling to figure out whether he was serious, and whether some tariffs would be levied more narrowly, since many parts of the U.S. drug supply chain are fragile, drug shortages are common, and upheaval at the FDA leaves questions about whether its staffing is adequate to inspect factories, where quality problems can lead to supply chain crises.

On May 12, Trump signed an executive order asking drugmakers to bring down the prices Americans pay for prescriptions, to put them in line with prices in other countries.

Meanwhile, pharmacists predict even the 10% tariffs Trump has demanded will hurt: Jolley said a potential increase of up to 30 cents a vial is not a king’s ransom, but it adds up when you’re a small pharmacy that fills 50,000 prescriptions a year.

“The one word that I would say right now to describe tariffs is ‘uncertainty,’” said Scott Pace, a pharmacist and owner of Kavanaugh Pharmacy in Little Rock, Arkansas.

To weather price fluctuations, Pace stocked up on the drugs his pharmacy dispenses most.

“I’ve identified the top 200 generics in my store, and I have basically put 90 days’ worth of those on the shelf just as a starting point,” he said. “Those are the diabetes drugs, the blood pressure medicines, the antibiotics — those things that I know folks will be sicker without.”

Pace said tariffs could be the death knell for the many independent pharmacies that exist on “razor-thin margins” — unless reimbursements rise to keep up with higher costs.

Unlike other retailers, pharmacies can’t pass along such costs to patients. Their payments are set by health insurers and pharmacy benefit managers largely owned by insurance conglomerates, who act as middlemen between drug manufacturers and purchasers.

Neal Smoller, who employs 15 people at his Village Apothecary in Woodstock, New York, is not optimistic.

“It’s not like they’re gonna go back and say, well, here’s your 10% bump because of the 10% tariff,” he said. “Costs are gonna go up and then the sluggish responses from the PBMs — they’re going to lead us to lose more money at a faster rate than we already are.”

Smoller, who said he has built a niche selling vitamins and supplements, fears that FDA firings will mean fewer federal inspections and safety checks.

“I worry that our pharmaceutical industry becomes like our supplement industry, where it’s the wild West,” he said.

Narrowly focused tariffs might work in some cases, said Marta Wosińska, a senior fellow at the Brookings Institution’s Center on Health Policy. For example, while drug manufacturing plants can cost $1 billion and take three to five years to set up, it would be relatively cheap to build a syringe factory — a business American manufacturers abandoned during the covid-19 pandemic because China was dumping its products here, Wosińska said.

It’s not surprising that giants such as Novartis and Eli Lilly have promised Trump they’ll invest billions in U.S. plants, she said, since much of their final drug product is made here or in Europe, where governments negotiate drug prices. The industry is using Trump’s tariff saber-rattling as leverage; in an April 11 letter, 32 drug companies demanded European governments pay them more or face an exodus to the United States.

Brandon Daniels, CEO of supply chain company Exiger, is bullish on tariffs. He thinks they could help bring some chemical manufacturing back to the U.S., which, when coupled with increased use of automation, would reduce the labor advantages of China and India.

“You’ve got real estate in North Texas that’s cheaper than real estate in Shenzhen,” he said at an economic conference April 25 in Washington, referring to a major Chinese chemical manufacturing center.

But Wosińska said no amount of tariffs will compel makers of generic drugs, responsible for 90% of U.S. prescriptions, to build new factories in the U.S. Payment structures and competition would make it economic suicide, she said.

Several U.S. generics firms have declared bankruptcy or closed U.S. factories over the past decade, said John Murphy, CEO of the Association for Accessible Medicines, the generics trade group. Reversing that trend won’t be easy and tariffs won’t do it, he said.

“There’s not a magic level of tariffs that magically incentivizes them to come into the U.S.,” he said. “There is no room to make a billion-dollar investment in a domestic facility if you’re going to lose money on every dose you sell in the U.S. market.”

His group has tried to explain these complexities to Trump officials, and hopes word is getting through. “We’re not PhRMA,” Murphy said, referring to the powerful trade group primarily representing makers of brand-name drugs. “I don’t have the resources to go to Mar-a-Lago to talk to the president myself.”

Many of the active ingredients in American drugs are imported. Fresenius Kabi, a German company with facilities in eight U.S. states to produce or distribute sterile injectables — vital hospital drugs for cancer and other conditions — complained in a letter to U.S. Trade Representative Jamieson Greer that tariffs on these raw materials could paradoxically lead some companies to move finished product manufacturing overseas.

Fresenius Kabi also makes biosimilars, the generic forms of expensive biologic drugs such as Humira and Stelara. The United States is typically the last developed country where biosimilars appear on the market because of patent laws.

Tariffs on biosimilars coming from overseas — where Fresenius makes such drugs — would further incentivize U.S. use of more expensive brand-name biologics, the March 11 letter said. Biosimilars, which can cost a tenth of the original drug’s price, launch on average 3-4 years later in the U.S. than in Canada or Europe.

In addition to getting cheaper knockoff drugs faster, European countries also pay far less than the United States for brand-name products. Paradoxically, Murphy said, those same countries pay more for generics.

European governments tend to establish more stable contracts with makers of generics, while in the United States, “rabid competition” drives down prices to the point at which a manufacturer “maybe scrimps on product quality,” said John Barkett, a White House Domestic Policy Council member in the Biden administration.

As a result, Wosińska said, “without exemptions or other measures put in place, I really worry about tariffs causing drug shortages.”

Smoller, the New York pharmacist, doesn’t see any upside to tariffs.

“How do I solve the problem of caring for my community,” he said, “but not being subject to the emotional roller coaster that is dispensing hundreds of prescriptions a day and watching every single one of them be a loss or 12 cents profit?”

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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More Californians are talking to their therapists through a video screen or by phone than in person, marking a profound shift in how mental health care is delivered as record-setting numbers seek help.

While patients and providers say teletherapy is effective and easier to get than in-person services, experts in the field noted that teletherapy often requires a skilled mental health practitioner trained to pick up subtle communication cues.

Almost half of the roughly 4.8 million adults who visited a medical professional for mental health or substance use disorders in 2023 did so exclusively through teletherapy, according to a KFF Health News analysis of the latest data from UCLA’s California Health Interview Survey.

About 24% of adults used a combination of face-to-face and teletherapy in 2023, while roughly 23% got help exclusively in person, according to the survey of about 20,000 California households.

A recent national study of patients in the Department of Veterans Affairs health care system found a similar pattern: Fifty-five percent of mental health care continued to be provided via telemedicine, a figure that spiked after patients shifted to teletherapy by necessity during the covid-19 pandemic.

Teletherapy is certainly more convenient, allowing patients to see their therapists from the comfort of home.

“It’s actually really effective,” said Joshua Heitzmann, president of the California Psychological Association. “I think part of that is that it just allows more comfortability — people are willing to work a little bit more when they’re comfortable.”

Studies back that up: Teletherapy patients report getting better at rates similar to those receiving in-person therapy.

“Research has basically shown that there's no difference between teletherapy versus in-person therapy — so, basically, as effective as in-person therapy,” said Tao Lin, a researcher at the University of Pennsylvania’s Center for the Treatment and Study of Anxiety, who recently conducted an analysis of several studies comparing teletherapy and face-to-face therapy.

But Lin said it can be difficult for a therapist to see hand motions or read body language during a video call, which could lead to therapists missing nonverbal cues about their patients’ emotional states. Lin’s most recent research, yet to be published, suggests therapy over the telephone “is less effective than video conferences” due to “more loss of information.”

And some people have trouble emotionally connecting with a therapist without seeing them in person, Lin said. Technical difficulties, not uncommon, can also interfere with clients building a therapeutic relationship.

Sacramento resident David Bain relies on teletherapy to treat his depression because mobility issues make it difficult for him to visit a therapist in person.

“It's almost to the point where I wouldn't be able to get the service if I wasn't able to get it through telehealth,” said Bain, executive director of NAMI Sacramento, a nonprofit that provides support and advocacy to people with mental illness.

Bain said that his one-on-one teletherapy sessions have helped but that he’s had less success with online group therapy. He recently participated in a 10-week dialectical behavior therapy class, but he didn’t get the connection and support he received in past in-person group settings, he said.

“There was probably me and two or three other people that were actually showing ourselves on screen,” he said. “Everyone else had their screens off.”

Teletherapy is increasingly offered through cellphone applications like BetterHelp and Talkspace. Patients using these applications often pay a subscription fee, which insurance may partly cover, in exchange for regular sessions and contact with therapists.

Eunkyung Jo, a researcher at the University of California-Irvine, co-authored a study published in 2023 that looked at patient reviews of eight of the most popular teletherapy apps. Many patients expressed satisfaction with their therapists, but the team also uncovered negative patterns.

Some patients did not get the therapy they paid for, often due to technical difficulties. Other patients reported their therapists acted disinterested or unprofessional, a finding Jo said could be tied to the relatively low pay therapists earn on some apps.

And several users mentioned in reviews that their therapist suddenly disappeared from the app without explanation. She said therapists in more traditional “pay-as-you-go” arrangements rarely discontinue treatment without warning.

Nikole Benders-Hadi, chief medical officer of Talkspace, said patients often can use their insurance to get therapy on the platform, at a typical cost of a $10 copay. Separately, Talkspace spokesperson Jeannine Feyen said salary for therapists has increased since Jo’s study was conducted, and that full-time Talkspace therapists make between $65,000 and $90,000 a year.

At BetterHelp, therapists earn up to $91,000 and the average patient rating last year for a live session on the platform was 4.9 out of 5, spokesperson Megan Garner said. A significant majority of patients reported reliable symptom improvement or remission, she added.

The number of Californians visiting a medical professional for mental health issues rose by about 434,000, or 10%, from 2019 to 2023, UCLA data shows. It jumped by nearly 2 million, or 69%, from 2009 through 2023.

Even so, the transition from in-person therapy to teletherapy has left some behind.

The UCLA data shows that Californians living within 200% of the federal poverty level — for example, a family of four with a household income of about $60,000 or under in 2023 — were less likely to use teletherapy.

The data also shows that residents in rural areas, where access to telehealth should provide a boon, weren’t using it as much as residents of urban areas.

For example, about 81% of Bay Area residents who visited a medical professional for mental health care in 2023 did so either fully or partially via teletherapy. About 62% of residents in the state’s rural, mountainous counties did the same.

Those disparities are suggestive of gaps seen in remote-work patterns: Wealthier, urban Californians are more likely to work from home than lower-income, rural residents. By extension, Californians of greater means have more opportunities to arrange online appointments and may be more comfortable with them.

By comparison, low-income folks tend to go into the office for doctor visits, Heitzmann said.

Lower-income and rural Californians may also lack the reliable internet service necessary for good telehealth. A recent KFF Health News analysis found millions of Americans live in places with doctor shortages and poor internet access.

Lower-income Californians also are more likely to live in tight quarters, making privacy for an intimate therapy session difficult.

Regardless, teletherapy is now dominant. And it’s not just patients who enjoy the convenience. Many therapists have ditched expensive office rents to work from home.

“Covid allowed that,” Heitzmann said. “A lot of folks really just got rid of their offices and were perfectly happy converting their home into some kind of office and doing it all day long.”

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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OAK FLAT, Ariz. — Carrying eagle feathers and chanting prayers, Western Apache runners hit the road on a roughly 80-mile journey this month to try to save their sacred land from being fast-tracked by President Donald Trump into a copper mine. This nationally watched battle, which hinges on religious freedom, awaits the U.S. Supreme Court.

The prayer run aimed to defend a 6-square-mile piece of land in rural Arizona outside of Phoenix called Chi’chil Biłdagoteel, or Oak Flat, where tribes have held ceremonies for centuries. The U.S. Forest Service, which owns the site, plans to trade a portion of it to a foreign-owned mining company, Resolution Copper, in exchange for other environmentally sensitive properties.

The battle over Oak Flat traces back 30 years, when prospectors found a massive copper deposit beneath the ground. The proposed land swap, which Congress approved in 2014 through a defense spending bill, has been stalled by three lawsuits.

But on April 17, the Trump administration pushed the project forward without waiting for the courts. The Forest Service announced it would issue an environmental review as soon as June 16, which would pave the way for the land transfer. Trump issued an executive order to expedite the Resolution Copper mine project, as part of a broader push to open more public lands to drilling and mining.

The copper mine would be the largest in North America, producing up to a quarter of U.S. copper demand, the company projects. But it also would destroy most of Oak Flat, leaving behind a sinkhole nearly 2 miles wide and as deep as the Eiffel Tower.

Apache Stronghold, a nonprofit that aims to protect sacred lands including Oak Flat, won a reprieve on May 9, when U.S. District Judge Steven Logan granted an injunction blocking the land swap while the Supreme Court considers its case. The high court is expected to decide whether to take it by early July.

“The federal government and Resolution Copper have put Oak Flat on death row — they are racing to destroy our spiritual lifeblood and erase our religious traditions forever,” Wendsler Nosie Sr., founder of Apache Stronghold, said in a statement. “We are grateful the judge stopped this land grab in its tracks so that the Supreme Court has time to protect Oak Flat from destruction.”

Apache Stronghold’s temporary victory came after the four-day journey from Oak Flat to the federal courthouse in Phoenix ahead of the injunction hearing. The prayer run drew 60 runners, running in segments. Eighty-five faith groups and 44 tribal nations are supporting Apache Stronghold’s Supreme Court appeal.

The fight over Oak Flat offers a glimpse into environmental, public health, and religious battles that may intensify as Trump prioritizes tapping into domestic sources of minerals such as copper, a key ingredient for electronics and renewable energy projects. The case also could set a legal precedent for whether religious freedom grants tribes the right to pray on ancestral lands outside of their reservations.

The Oak Flat case highlights some of the health concerns that arise when ancestral Native American lands owned by the federal government are opened to mining, from physical illness — due to water and air pollution — to psychological, spiritual, and existential distress.

In roadside prayers and rallies along the run, members of various tribes offered visceral accounts of the harm they’ve experienced after sacred lands were tapped for minerals, fossil fuels, and heavy metals. They described attacks on health, identity, religion, and culture that many referred to as ongoing genocide.

At Oak Flat Campground, Apache Stronghold supporters gathered for a ceremony before the prayer run began. Runners were blessed with ashes to protect them on a route that would traverse vast fields of cacti, narrow mountain passes, and even two combative drivers on city streets.

Among those lacing up running shoes was Nizhoni Pike, 24, one of Nosie’s granddaughters. Pike has a deep connection to Oak Flat, where her family holds ceremonies and gathers medicinal plants and food. For Pike, her distress is visceral, immediate.

“This fight means so much,” she said.

Oak Flat is where Pike had her sunrise ceremony, a coming-of-age ritual, at age 13. During the ceremony, she built her own wickiup, a traditional Apache dome-shaped dwelling made of wood and thatch from the land. Her body was painted with white clay, embodying the White Painted Woman, a revered cultural figure. At the end of a four-day ceremony involving dancing from morning to night, Pike walked to a spring to wash off the clay and return it to the land. Butterflies filled the air, she recalled. Her family named the area Nizhoni’s Butterfly Canyon.

The sunrise ceremony creates a cord by which women are forever connected to the land where they came of age, she said. Tribal elders have told her that women may suffer illness if the cords are cut.

“I’m really worried for me and the other girls that had their sunrise dances there,” she said.

She already had anxiety, she said, and it has grown worse because of the drying up and pending destruction of Oak Flat. Pike said when she returned to her butterfly canyon a few years after her sunrise ceremony, the spring was dry and a dead turtle floated in a nearby pool. She said she has seen large cracks in the earth there and old oak trees starting to die.

“I’ve never felt so much pain in my heart or spirit before,” she said.

She and other Apache members attribute the dryness to Resolution Copper, which has been pumping water out of a 7,000-foot-deep mining shaft on its adjacent property for years.

In a statement, company spokesperson Tyson Nansel denied that extracting water at that depth affects the surface water. He said the company treats the removed water then gives it away to farmers to grow crops so they can “pump less fresh groundwater themselves.” He said the company has made significant changes to its proposed mine to “reduce potential impacts on Tribal, social, and cultural interests.”

Along the run, supporters gathered for blessings from various faith leaders, some of whom sprinkled them with holy water.

They first stopped in the nearby town of Superior, part of the Copper Triangle, which has a long history of mining. The mayor there supports the new mine, which the company has said will create 1,500 jobs during its projected 60-year lifespan. But opponents in Superior warned that mining has left the area with high cancer rates, toxic dumps, and ghost towns.

In the city of Mesa, runners stopped at an ancestral site of the O’odham people to receive support from two Native leaders with roots there.

Su:k Chu:vak Fulwilder, a council member of the Salt River Pima-Maricopa Indian Community, said loss of land and identity is taking a toll on her people. Fulwilder said her tribe suffers from high suicide rates, and her own son took his life in 2022.

“These sacred lands being disturbed — our spirits feel that pain and that anger,” she said.

Other supporters raised concerns about water quantity and quality in a time of long-term drought. Resolution Copper’s plans to conduct block-cave mining would require nearly 250 billion gallons of water and the natural water systems would be “altered forever and, in many cases, destroyed in perpetuity,” according to a federal environmental impact statement and hydrology report.

Henry Muñoz, 69, who worked in mines for nearly 24 years and is now chair of the Concerned Citizens and Retired Miners Coalition in Superior, noted that the mine would require scarce water to pipe away toxic waste and copper concentrate. The toxic slurry would be sent to a tailings site, he said, where it would require more water so that dust laden with arsenic and sulfur doesn’t blow away. He noted that Resolution Copper is owned by foreign mining companies Rio Tinto and BHP, so much of the profit would go overseas.

With cuts to the Environmental Protection Agency and mine and worker safety agencies, Muñoz added, “the company is going to have free rein to do as they please with the environment, and the public won’t have any recourse.”

The prayer run concluded in downtown Phoenix, merging into a march to the courthouse.

Cadence Hardy, 16, who is Diné, said she grew up in Black Mesa, Arizona, where intensive coal mining depleted an aquifer and its springs, deeply affecting Hopi and Diné communities. Her great-grandfather worked in a coal mine there and got lung disease and cancer, she said.

She said she’s inspired to support Apache Stronghold “to stop what happened to my family from happening to their family.”

In the May 7 federal court hearing, Victoria Peacey, president of Resolution Copper, took the stand, facing a courtroom packed with Apache Stronghold supporters, and testified that it would be at least 16 years until Oak Flat would begin to sink.

Nizhoni Pike later said she felt overwhelmed. Sixteen years is a short time, and the consequence would be huge, she said. “My ancestors’ history could literally be wiped.”

In the courtroom, Pike said, she looked Peacey in the eye.

“Look at me,” Pike recalled thinking. “You are going to destroy me if you destroy Oak Flat.”

If you or someone you know may be experiencing a mental health crisis, contact the 988 Suicide & Crisis Lifeline by dialing or texting “988.”

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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News has been coming out of Washington, D.C., since the start of the second Donald Trump administration like water out of a fire hose. It can feel impossible to stay on top of all the changes.

So in this episode of “An Arm and a Leg,” host Dan Weissmann speaks with KFF Health News chief Washington correspondent Julie Rovner to try to get a handle on what’s happened so far. Rovner has been covering health care in Washington for nearly 40 years and hosts the weekly health policy podcast “What the Health?”They talk about what the end of a little-known federal health regulatory agency could mean for the health care benefits of millions of Americans, with some help from KFF Health News senior correspondent Arthur Allen. Then, Rovner talks about efforts to cut Medicaid and why it may not be so easy to take apart.

Dan Weissmann @danweissmann Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting. Credits Emily Pisacreta, Claire Davenport Producers Adam Raymonda Audio wizard Ellen Weiss Editor Click to open the Transcript Transcript: A Health Policy Veteran Puts 2025 in Perspective

Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.

Dan: Hey there– 

2025 has been a LOT so far, especially since the second Trump Administration got started. We hear about a lot of sudden moves, a lot of cuts, maybe some reversals — in health care (and everywhere else). With bigger moves maybe still to come. 

What’s ACTUALLY happened so far? I can’t keep up. 

But I know some people who might. Our pals at KFF Health News have a whole NEWSROOM — dozens and dozens of people — publishing stories every day. 

And one person in particular there is as plugged-in as can be. 

Julie Rovner has been covering health care in Washington, DC for longer than anybody. Close to four decades. 

When we first start talking, Julie gestures behind her. On a bookshelf in her office are copies of Congressional Quarterly, where she started reporting in the 1980s. 

Julie Rovner: I mean. Literally every time somebody in Congress sneezed on healthcare, I wrote a story. That was my job. For eight years. It was sort of the beginning of my career, but I’ve sort of thought about it ever since. 

Dan: Over the decades, she’s watched big changes happen incrementally, one sneeze at a time. 

Julie covered health care for NPR for more than 15 years, and since 2017, she’s hosted KFF’s podcast What the Health. 

Every week, she convenes a roundtable of top health-care reporters for a total inside-the-beltway nerd-fest. 

And it turns out: Even Julie Rovner has a hard time maintaining an up-to-date scorecard.

Julie Rovner: I’m trying to keep a running list of what’s been cut and what’s been restored, and it’s virtually impossible ’cause there’s 20 things every day. I mean, basically the way I do my news podcast now is I spend four days a week making a list, and then on the fifth day, I cut it in half about the things we can talk about. 

Dan: Oh my gosh. 

Julie Rovner: And on the day of the podcast, I usually cut it in half again. Dan: So, the scorecard keeps changing too fast. But Julie does see a big picture. 

And because she knows all the details– four decades of them– she can help us see it by telling us two stories: 

One about a teeny part of the health care system that most of us have never heard about. Which is now one of the too-many-to-keep-track-of offices that the Trump Administration has taken a chainsaw to. 

Then we’ll look at something everybody’s heard about — and lots of people are worried about: Medicaid. And Julie’s gonna show us why it may not be so easy to take apart. 

This is An Arm and a Leg, a show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann– I’m a reporter, and I like a challenge. So the job we’ve chosen on this show is to take one of the most enraging, terrifying, depressing parts of American life, and bring you something entertaining, empowering, and useful. 

Our first story — this little agency — teeny, by government standards — Julie actually watched it get built, early in her career. And it turns out to be a great example for this show to look at. 

I mean, here’s how Julie starts telling its origin story: 

Julie Rovner: In the late 1980s, there was kind of an agreement between Republicans and Democrats that healthcare costs were going up really fast and we didn’t know why. And one of the reasons is that we didn’t actually know what worked. 

Dan: That is, everybody wanted to know: Why does health care cost so freaking much, and what can we maybe do about it?

And they thought: Maybe somebody should do some research about what’s actually worth paying for. Between Medicare, Medicaid, and health benefits for government workers and veterans, the federal government does a lot of the paying. 

Julie Rovner: There was consensus that the federal government is spending all of this money on healthcare, they should spend at least a little bit of it, trying to figure out what works. And there should be some kind of, you know, referee, like a government agency. 

Dan: And of course that agency would need a name.. 

Julie Rovner: It was originally gonna be the Agency for Healthcare Research and Policy, but somebody figured out at the last minute that that would make its acronym AH-CRAP and they decided that was a bad idea. 

Dan: So they reversed the last two bits and called it the Agency for Healthcare Policy and Research. 

Julie Rovner: My favorite piece of health policy trivia. 

Dan: What can you tell me about the various sneezes and hiccups and coughs along the way? 

Julie Rovner: Oh, well there was quite a fight in creating “ah-crap.” 

Dan: Even though the idea had backers among both Democrats and Republicans, they had to deal with constituencies — interest groups — with turf to protect. 

Julie Rovner: There were medical organizations and insurance companies and they did not want the government dictating how medicine would be practiced. So it was not, you know, it was not a done deal. It took a lot of negotiating. 

Dan: And in 1989, the first year of George H.W. Bush’s presidency, neither political party could muscle anything through. 

Julie Rovner: Democrats are in charge of Congress. Republicans are in charge of the White House. Hence, anything that’s gonna happen is gonna be bipartisan. Unless they’re gonna try to override a veto. And hint hint, there were a couple of attempts to override George HW Bush vetoes, and

they all failed by a couple of votes, mostly on abortion stuff. And there was an NIH bill because I remember obscure things like this. 

Dan: I mean, you see why Julie is THE person to give us this story, right? 

So the agency gets created in 1989. and one of its jobs is creating practice guidelines. Official federal recommendations about treatments: Which ones worked, which ones don’t. 

Julie Rovner: It puts out an awful lot of guidelines and surprise, some of them were really controversial. 

Dan: Some eye doctors didn’t like a guideline on cataracts. The Pharma industry hated A guideline that recommended reducing the use of brand-new drugs. 

Julie Rovner: Then mid nineties they come out with one on back pain, on acute back pain. And one of the things this guideline found at looking at. All of the evidence is that. Back surgery doesn’t actually work very well for acute back pain. Um, needless to say, the nation’s spine surgeons were not thrilled. 

Dan: That guideline came out in 1994. That November, Republicans scored big majorities in both houses of Congress. 

NEWS ANCHOR 1: We begin tonight with the most straightforward reaction we’ve heard all day to the results of yesterday’s election. The Democratic chairman David Wilhelm said simply,“We got our butts kicked.” 

NEWS ANCHOR 2: Republicans called their promises a contract. 

GOP MEMBER: Today, we Republicans are signing a contract with America. 

Dan: A contract that required, among other things, big budget cuts. And this little agency ended up on their hit list. 

Julie Rovner: they were representing their spine surgeon constituents, and they were ready to just get rid of the whole thing. they tried to just wipe it out in the appropriation bill and they came very close, but didn’t quite

Dan: They did cut funding — including the money for creating guidelines. And they didn’t forget. In 1999, Congress passed legislation that formally kicked the agency out of the guidelines business altogether 

And gave it a new name: The Agency for Healthcare Research and Quality. AHRQ (arc), for short. 

Julie Rovner: Congress loves to give health agencies new names – even when they’re the same agency– because they want to sort of rid it of its baggage from the past. So we’ve renamed it, gotten it out of the guidelines business, but it is still the main Federal agency that looks at the quality of healthcare and how healthcare works. 

Dan: For example, Julie says AHRQ runs the Healthcare Cost and Utilization Project. HUP for short, of course.Which keeps track of some important numbers: 

Julie Rovner: How many people were in the hospital for how long? How many of them were kids? How many people got ambulatory surgery? How many hospital readmissions were there? This is that database 

Dan: And maintaining that database is part of AHRQs job. 

Julie Rovner: So it’s very small. But it’s the only agency that basically does what it does, which is to say we spend a fifth of our economy on healthcare. We should try to figure out how well it works. [ 

Dan: Or rather it was, until now. In March, officials from the Trump Administration’s Department of Government Efficiency — DOGE for short — held their first meeting with AHRQ’s leaders. 

Arthur Allen: it was a meeting in person at, at their office where this was done 

Dan: Julie’s KFF Health News colleague Arthur Allen talked with one of those ARQ staffers. 

Arthur Allen: It was just told, we don’t know what you do. We’re gonna cut you 80, 90%. 

Dan: Arthur says he found out about the whole thing by following up on a tip in a LinkedIn post. He says pitching the story wasn’t the easiest sell, even at KFF.

Arthur: Everybody was making jokes about it, They were like, yeah, good luck making an interesting story out of this. You know, good luck explaining what AHRQ does or making it into something anybody would want to read. 

Dan: He did, and they published it. And it led to a new tip: As Arthur reported, ARQ was getting merged with another office in the department of Health and Human Services– the Assistant Secretary for Planning and Evaluation. 

Sources from that office saw his ARQ story and told him: Their office was getting cut dramatically too. 

According to his sources, between the two agencies, almost three quarters of the people are gone. 

Including: everybody who was involved in calculating the federal poverty line. 

As the headline for Arthur’s story says: eighty million people qualify for benefits based on that number. 

Arthur Allen: It’s used by, you know, literally thousands of agencies, private, public, state, local, federal, to decide whether people qualify for benefits: food stamps, Medicaid, subsidies for childcare– you know, pretty much anything you can think of where there’s assistance to lower income people. 

Dan: One of the fired workers told Arthur, quote: “There’s literally no one in the government who knows how to calculate the guidelines. And because we’re all locked out of our computers, we can’t teach anyone how to calculate them.” 

Arthur Allen: The guy had been doing it for like 20 years. He was just thrown out the door and email removed. No way to reach him. 

Dan: He told Arthur that using a different methodology would produce different results. If the new calculation didn’t fully account for inflation, for one example, some people could end up losing benefits. And there are a lot of other examples. 

Arthur Allen: Over years, you know, you’re trying to develop the best way to do this. Any kind of number like this, which you’re trying to hone down and make it as accurate as possible, you develop this sort of fingerspitzengefühl…

Dan: What’s fingerspitzengefühl? 

Arthur Allen: Well, it’s a German word that means like, feeling at the end of your fingers, where it’s like, it, it’s an undefinable ability to do something like 

Dan: Like pick a lock? 

Arthur Allen: Yeah. Yeah. Like Right. Exactly. 

Dan: An HHS spokesperson told Arthur the department would continue to comply with statutory requirements and maintain critical programs. After the article was published, another spokesperson called KFF to say “the idea that this will come to a halt is totally incorrect. Eighty million people will not be affected.” 

Arthur Allen: They were like, there are other people at HHS who can do that and, you know, it’s, it’s true. It’s just, you could have made it so much easier. And also they haven’t been the most reliable always in terms of, you know, saying something and then following through on it. So, you know, there’s reason to be skeptical. 

Dan: Well, it’s, it’s a reporter’s credo, right? If your mom says she loves you, get another source. 

Arthur Allen: Yeah. 

Dan: So now we’ve actually looked at a COUPLE of small examples. And there are so many more. Julie Rovner sees them as part of the bigger picture.. 

Julie Rovner: How I’ve been thinking about this is that our healthcare system is a giant Jenga tower and it’s a little wobbly and what holds it up is everything that happens from the Department of Health and Human Services, it’s all the rules of the road. It’s all the enforcement, it’s all the protections. In many cases, it’s actually the funding. It’s what funds a lot of programs for people with low incomes, the training of, not just doctors, but future researchers. And they’re yanking out sticks from this Jenga tower as fast as they possibly can, and when the whole thing comes down, it’s gonna be very, not pretty. 

Dan: She sees all those blocks getting pulled from the Jenga tower. She knows why they’re there. And what could happen as they get yanked away.

Julie Rovner: I feel a lot like I did during the early parts of the pandemic. It’s just that feeling of, oh my God, what fresh hell is next? And will we ever be able to fix it? I’m, and I’m really worried about that. And you know, at least during the pandemic, I felt like everybody felt that way. 

Dan: With cuts and changes we’ve seen so far, the administration has acted on its own– and courts may or may not stop or reverse some of them. 

But then there’s one of the big things lots of people worry about: huge cuts to Medicaid, which insures something like 79 million people.Cuts on the scale we’re hearing about would requires Congress to act. To pass legislation. 

Which Julie Rovner thinksCongress will find very hard to do. 

Julie Rovner: Not so much because it’s hard to cut Medicaid, which it is, but because it’s gonna be really hard for this Congress with these little tiny Republican majorities to agree on anything. 

Dan: Julie, of course, has some very specific reasons these particular cuts will be so difficult for these particular Republican majorities. That’s next. 

This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom covering health issues in America. Their journalists — like Julie Rovner and Arthur Allen — do amazing work. We’re honored to be colleagues. 

So just to recap, here’s why cuts to Medicaid loom so large. 

NEWS ANCHOR 3: Republicans are looking to slash $2 trillion with a T in long-term spending. And Medicaid could be a target 

Dan: Congressional Republicans have passed a budget framework— basically, an outline — with big cuts spread across ten years. 

They’ve assigned committees to find specific cuts, and they’ve given more than 800 billion dollars in cuts to a committee that doesn’t have a lot of other options 

NEWS ANCHOR 4: A new analysis from the Congressional budget office shows the proposed budget would require MASSIVE cuts to Medicaid spending.

NEWS ANCHOR 5: It’s mathematically impossible for Republicans to meet their own target without cutting Medicaid. 

Dan: And Julie says, cuts on this scale could hurt a lot of people. 

Julie: I’ve seen estimates that 20 million people could lose their Medicaid coverage,…it’s maybe a quarter of the people on Medicaid. 

Dan: Julie says Republicans want to avoid saying they’ll make these kinds of cuts. So… 

Julie Rovner: You know, now Republicans are saying we’re not gonna cut Medicaid, puts the air quotes. 

Dan: What they’re saying they WILL do, that’s gonna require some unpacking. Here’s the official line, as Julie puts it 

Julie Rovner: We’re just gonna reduce the extra money that Medicaid pays states for the Medicaid expansion, under the Affordable Care Act. 

Dan: OK. Extra money for states. Medicaid Expansion. Affordable Care Act. 

Let’s break that down. The Affordable Care Act is best known for “Obamacare” marketplaces, where people can buy health insurance even if they have pre-existing conditions. 

But another big thing it did was to expand Medicaid: It raised income cut-off so more people could qualify. 

Now, the way Medicaid is designed, states share the cost with the federal government. But under the ACA, the feds send extra money to states, to pay for most of that expansion. Like 90 percent of it. 

That’s the context for this line that Congress wouldn’t cut Medicaid, just the “extra” money to states for the expansion. 

Julie Rovner: And we see a lot of Republicans saying, oh, if states wanna continue it. They can just pay their regular share. Well, that regular share is $626 billion over the next 10 years that states would cumulatively have to come up with. Um, states, unlike the federal government, pretty much have to balance their budgets every year. They don’t have 626 billion extra dollars hanging around to do that. 

Dan: Julie thinks a lot of states would end up cutting Medicaid. Some would do it automatically, with laws that are already on the books. 

Julie Rovner: We have 12 states that say if Congress reduces that threshold from 90%, we immediately cancel our Medicaid expansion. They’re called trigger laws and there’s 12 states with trigger laws. 

Dan: But some states — not only do they not have trigger laws. They have a big problem. 

Julie Rovner: Three states, three very red states, Missouri, Oklahoma, and South Dakota. Expanded Medicaid, not just by ballot measure, but by amending their state constitutions. 

Dan: Yeah, this was kind of interesting: All the states that initially rejected the Medicaid expansion were led by Republican politicians. 

It seems like a big reason they opposed it was because, well, it was part of the ACA– ya know, “OBAMA-care”? Their legislators would never vote for it. 

But expanding Medicaid is popular with a lot of people. The legislatures in these states didn’t vote for the expansion, the people did — they voted for ballot initiatives that actually added Medicaid expansion into their state constitutions.. 

Julie Rovner: These three states, that change their constitutions, don’t have trigger laws because they have changed their constitution. That maybe helps explain why Senator Hawley from Missouri, who is not known as a big defender of Medicaid, uh, has said he’s not gonna vote for Medicaid cuts because his is one of the states that could be left holding a very large and expensive bag if they’ve rolled back this additional federal match. So that’s just one example. You know, when he first said it, it’s like, why is Josh Hawley suddenly so gung-ho for Medicaid? Um, that helps explain why. 

Dan: That is very interesting. So this is an example of why it’s hard to cut Medicaid. Um, 

Julie Rovner: Very, yes.

Dan: And Julie says, there are other reasons too. 

Julie Rovner: I mean, if you go back to 2017, when the Republicans try to repeal and replace the Affordable Care Act for the first time, Medicaid turned out to be a main reason why they couldn’t, because suddenly people discovered that Medicaid is not just for, you know, moms and kids on welfare, medicaid pays. The vast majority of the nation’s nursing home bills, so everybody’s grandparents who were in nursing homes were probably getting Medicaid. Suddenly we discovered how many people were getting Medicaid and people discovered how many people were getting Medicaid, and they came to Congress. 

NEWS ANCHOR 6: On Capitol Hill where there were protests and many arrests today 

Crowd: Kill the bill. 

News reporter: Senate Republicans today received a bruising. Welcome back to Capitol Hill… 

Crowd: Kill the bill. Health care is a human right. 

Julie Rovner:I was there and they said, we don’t want you to do this, you know, it, it was very close, but in the end, I think Medicaid was really a major reason why Congress proved unable to repeal the ACA, if anything, Medicaid is now more entrenched and there are more people on it than there were in 2017. Um, and Congress has even smaller majorities. You judge how hard it’s gonna be. 

Dan: And as you’ve said, three states with two Republican senators each. Julie Rovner: Each. That’s correct. So there’s six. 

Dan: Republicans hold 53 Senate seats. They could lose three votes and call in Vice President JD Vance to break a tie. They need 50 votes. 

Julie Rovner: So they have 53 votes and six of those votes come from states. That would be left holding a very expensive bag. And another three or four senators who voted against it in 2017 are still there. So even counting to 50 is hard.

Dan: First, that’s one of Julie’s beloved Corgis in the background, amped up because he hears a neighbor dog outside. 

Wally: Woof! 

Julie Rovner: Wally, are you barking at Churchy? I’ll let you go play with him later. 

Second, of course we don’t know what Congress will actually do in this very-unusual year. 

But no matter what, it is fun talking about politics with Julie Rovner. 

And even if it does not seem like a fun time to be Julie Rovner, to be doing the job she does — drinking from the firehose, as she says — I don’t think she’s going anywhere. 

Julie Rovner: Yeah, I mean, you know, my mom was a journalist. My dad was a, a political staffer, basically. He worked at the state, federal, and local level in his career and basically, you know, made policy happen. And, , that is my legacy and I really care about it. 

Dan: And, she is not taking in absolutely EVERYTHING. For instance, she has not been watching “The Pitt.” The super-exciting– and super-stressful–new medical drama we talked about last time–the one that chronicles an especially-intense day in a busy urban emergency room. 

Julie Rovner: I started to watch it –and I watched every episode of ER. I mean, I’m one of those people. I’ve also seen every episode of Grey’s Anatomy which is insane. Um, but I started to watch the Pitt and I got about three quarters of the way into the first episode, and I thought, I cannot deal with this right now. And I turned it off. 

Dan: Yeah. 

Julie Rovner: I just– and I watched severance! I’m like,‘Why am I watching severance? I do not need anything creepy in my life right now.’ But it was very good. It’s funny, I could get through severance, but I could not get through The Pitt. 

Dan: So, even Julie Rovner has her limits. Which I think is great.

She is doing the thing I remind everyone to do at the end of every episode of this show: Taking care of herself. 

If you have not subscribed to our First Aid Kit newsletter yet, I think this is a great time to check it out. 

It’s where we boil down some of the practical things we’ve learned about taking care of ourselves and each other: 

My colleague Claire Davenport has been helping her roommate fight back against more than 14 thousand dollars in medical bills. They wiped out ten thousand with some due diligence. 

And I’m collecting advice for what could be a one-page resource: Some quick advice and links that everybody should get before the first hospital bill arrives. 

You can sign up– and read everything we’ve done so far — at arm and a leg show dot com, slash first aid kit. 

We’ll be back with a new episode in a few weeks. 

Until then, take care of yourself. 

This episode of An Arm and a Leg was produced by me, Dan Weissmann–, with help from Emily Pisacreta, Claire Davenport, and Zach Dyer of KFF Health News –And edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. 

Our music is by Dave Weiner and Blue Dot Sessions. 

Bea Bosco is our consulting director of operations. 

Lynne Johnson is our operations manager. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America — 

and a core program at KFF: an independent source of health policy research, polling, and journalism.

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. 

An Arm and a Leg is Distributed by KUOW– Seattle’s NPR station. And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support. Thanks! And thanks for listening.

“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

For more from the team at “An Arm and a Leg,” subscribe to its weekly newsletter, First Aid Kit. You can also follow the show on Facebook and the social platform X. And if you’ve got stories to tell about the health care system, the producers would love to hear from you.

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On the eastern plains of Colorado, in a county of less than 6,000 people, Lincoln Health runs the only hospital within a 75-minute drive. The facility struggles financially, given its small size and the area’s tiny population.

But for over a decade, the Hugo, Colorado-based health system has remained afloat partially thanks to a surprising source: special taxes on the state’s hospitals.

The taxes Lincoln pays help cover the state’s Medicaid costs and — because the federal government matches a portion of what states spend on Medicaid — enable Colorado to claim more federal money. That generally leads to more dollars for the hospital. The tax proceeds also have helped Colorado expand Medicaid under the Affordable Care Act to cover 400,000 more low-income adults, significantly reducing the number of people showing up at hospital doors without insurance.

Last year, Lincoln paid $500,000 in provider taxes but netted more than $3.6 million extra from Medicaid, accounting for about 15% of its budget, said Lincoln CEO Kevin Stansbury.

“These dollars allow me to care for patients who are enrolled in Medicaid and to break even rather than lose money,” he said. “Without them, it would significantly impact our ability to survive.”

Every state except Alaska uses at least one provider tax to boost its federal Medicaid dollars.

But Republicans who control Congress are looking for potential cuts in the nearly $900 billion Medicaid program to help fund an extension of President Donald Trump’s tax cuts — and have sought to portray provider taxes as malicious, sometimes even deriding them as “money laundering.” Lawmakers say they may curtail or eliminate provider taxes as part of legislation to enact Trump’s domestic agenda.

“It’s infuriating,” Stansbury said.

Medicaid and the closely related Children’s Health Insurance Program together cover roughly 79 million low-income and disabled people and are jointly financed by states and the federal government.

Federal dollars match state payments with no limit. While the split varies based on a state’s per capita income, the federal match ranges from 50% to 77% for children, pregnant women, and people with disabilities, who make up most of the enrollment.

States started using provider taxes in the 1980s to help pay their share and gain additional Medicaid funds from the federal government.

Brian Blase, a former Trump health policy adviser who leads the conservative Paragon Health Institute, sees provider taxes as one of the highest forms of waste in Medicaid. States and their hospitals, nursing homes, and other providers aren’t held accountable for how the tax money is used, reducing incentives for states to control Medicaid spending, he said.

“This has been a feature of the program for four decades, and it is a feature that is getting worse,” Blase said.

The Congressional Budget Office estimates eliminating provider taxes would save the federal government more than $600 billion over a decade.

Rep. Brett Guthrie (R-Ky.), who chairs the House committee that oversees Medicaid, has said provider taxes are on the menu for potential cuts.

Other changes Republicans are considering to cut federal Medicaid spending include requiring adult enrollees to prove they’re working as a condition of eligibility, as well as ending higher payments for adults enrolled as part of the Affordable Care Act’s expansion of the program.

Since 2014, more than 20 million nondisabled adults in 40 states and Washington, D.C., have gained coverage under the expansion.

House Republicans have set a Memorial Day deadline to come to an agreement on spending cuts, which would help pay for extending about $4 trillion in tax cuts passed during Trump’s first administration and set to expire at the end of this year.

The Government Accountability Office and the Medicaid and CHIP Payment and Access Commission, a congressional advisory board, have raised concerns about the provider taxes, which effectively saddle federal taxpayers with state expenses. Republican and Democrat presidents have criticized or proposed curtailing the use of Medicaid provider taxes — including Trump in his first term, Barack Obama, and Joe Biden while serving as vice president.

But opposition from hospitals, nursing homes, and states snuffed out any move to limit or end the arrangements.

Colorado and other states often use the money to maintain or increase payments to providers, which are often paid less by Medicaid than by Medicare, the federal program primarily for people 65 or older, or private insurers.

States have added provider taxes to help generate federal money to cope with economic downturns and budget constraints.

Hospitals in Idaho last year began paying an additional provider tax to increase pay to hospitals and home- and community-based providers. The tax came as Idaho’s Republican-controlled legislature sought to add many conditions that threatened to end the state’s Medicaid expansion — which would also eliminate a key source of increased federal funding.

Brian Whitlock, president and CEO of the Idaho Hospital Association, said funding from the hospital tax helps boost Medicaid payments to about 80% of Medicare’s rates instead of 60%.

“We still lose money on every Medicare and Medicaid patient,” he said. “The state recognizes that this money helps offset the losses we take under Medicaid reimbursement.”

While hospitals and nursing homes have been the main beneficiaries of provider tax proceeds, ambulance services have also paid and benefited from Medicaid taxes. States increasingly have also approved Medicaid taxes on private insurers that operate their Medicaid programs to gain more federal funds.

California’s Medicaid managed care tax began in 2009 and is expected to generate nearly $9 billion in net revenue for the 2024-25 fiscal period — or about 5% of the state’s Medicaid budget, according to the California Legislative Analyst’s Office.

In recent years, California has extended full Medicaid coverage to immigrants lacking permanent legal status. Federal law prohibits federal Medicaid dollars from being used to cover people in the country without authorization, but states can use their own money.

At a presentation to congressional staffers in April, Blase cited California’s strategy as an example of provider tax abuse and claimed the state is effectively laundering federal funds to cover people living in the U.S. without authorization.

In practice, the tax has been a kind of fiscal pressure valve generally offsetting state spending. A ballot measure that passed in November now requires that much of the money from California’s tax specifically be used to increase Medicaid reimbursement to doctors, hospitals, and other providers.

Hospital officials and state Medicaid leaders argue the term “money laundering” is an inaccurate way to describe provider taxes, since they are allowed by federal law. But Blase said calling the levies a “tax” is misleading, pointing out that most businesses don’t typically advocate to pay one.

Jamie Whitney, chief legal officer for Texas-based Adelanto HealthCare Ventures, a consulting firm, said that provider taxes are a politically neutral way to help states pay for Medicaid and that curtailing their use would harm them all. “This is not a red-state, blue-state issue,” she said.

Colorado is one of more than a dozen states that have funded an ACA Medicaid expansion using provider tax money. Others include Arkansas, Louisiana, Missouri, North Carolina, Ohio, and Virginia.

Colorado implemented its Medicaid provider tax effort in 2009. In the 2024 fiscal year, about $5 billion of the state’s $15 billion Medicaid program was funded by provider taxes, according to the state.

The money helps the state pay higher Medicaid reimbursements to hospitals, which reduces their need to charge higher rates to private insurers, said Kim Bimestefer, executive director of the Colorado Department of Health Care Policy and Financing, which oversees Medicaid.

Some of the extra payments are dependent on hospitals meeting certain quality and patient-safety metrics, such as reducing readmission rates after patients are discharged — a requirement state officials say improves care for everyone.

The provider taxes also fund a program allowing working residents with disabilities to buy into Medicaid coverage even if their income is as high as 300% of the federal poverty level, or $46,950 for an individual. About 20,000 people are enrolled in the program.

Among them is Alison Sbrana, 31, of Fort Collins, Colorado, who has a type of chronic fatigue syndrome and relies on Medicaid to cover long-term home care.

“It would be devastating if the benefit went away,” said Sbrana, who works as a researcher and activist for those with the same disorder. “I would be forced to stop working to keep my income low enough to qualify.”

The state’s provider taxes also pay for a $60 million fund to support rural hospitals, helping them add telehealth services, recruit surgeons, and hire paramedics, according to a state report.

Konnie Martin, CEO of San Luis Valley Health, a two-hospital system based in Alamosa, Colorado, said her nonprofit paid $5.4 million in provider taxes last year and gained about $15 million in benefits from higher Medicaid payments and the rural grants.

She said the money helps her hospital maintain obstetrical services, so residents don’t have to drive 120 miles to the nearest maternity hospital. Without the birthing center, the entire region would suffer, she said.

“It also would gut the economy of the community, because young people will move away,” she said.

KFF Health News senior correspondent Bernard Wolfson contributed to this report.

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Rennie Glasgow, who has served 15 years at the Social Security Administration, is seeing something new on the job: dead people.

They’re not really dead, of course. In four instances over the past few weeks, he told KFF Health News, his Schenectady, New York, office has seen people come in for whom “there is no information on the record, just that they are dead.” So employees have to “resurrect” them — affirm that they’re living, so they can receive their benefits.

Revivals were “sporadic” before, and there’s been an uptick in such cases across upstate New York, said Glasgow. He is also an official with the American Federation of Government Employees, the union that represented 42,000 Social Security employees just before the start of President Donald Trump’s second term.

Martin O’Malley, who led the Social Security Administration toward the end of the Joe Biden administration, said in an interview that he had heard similar stories during a recent town hall in Racine, Wisconsin. “In that room of 200 people, two people raised their hands and said they each had a friend who was wrongly marked as deceased when they’re very much alive,” he said.

It’s more than just an inconvenience, because other institutions rely on Social Security numbers to do business, Glasgow said. Being declared dead “impacts their bank account. This impacts their insurance. This impacts their ability to work. This impacts their ability to get anything done in society.”

“They are terminating people’s financial lives,” O’Malley said.

Though it’s just one of the things advocates and lawyers worry about, these erroneous deaths come after a pair of initiatives from new leadership at the SSA to alter or update its databases of the living and the dead.

Holders of millions of Social Security numbers have been marked as deceased. Separately, according to The Washington Post and The New York Times, thousands of numbers belonging to immigrants have been purged, cutting them off from banks and commerce, in an effort to encourage these people to “self-deport.”

Glasgow said SSA employees received an agency email in April about the purge, instructing them how to resurrect beneficiaries wrongly marked dead. “Why don’t you just do due diligence to make sure what you’re doing in the first place is correct?” he said.

The incorrectly marked deaths are just a piece of the Trump administration’s crash program purporting to root out fraud, modernize technology, and secure the program’s future.

But KFF Health News’ interviews with more than a dozen beneficiaries, advocates, lawyers, current and former employees, and lawmakers suggest the overhaul is making the agency worse at its primary job: sending checks to seniors, orphans, widows, and those with disabilities.

Philadelphian Lisa Seda, who has cancer, has been struggling for weeks to sort out her 24-year-old niece’s difficulties with Social Security’s disability insurance program. There are two problems: first, trying to change her niece’s address; second, trying to figure out why the program is deducting roughly $400 a month for Medicare premiums, when her disability lawyer — whose firm has a policy against speaking on the record — believes they could be zero.

Since March, sometimes Social Security has direct-deposited payments to her niece’s bank account and other times mailed checks to her old address. Attempting to sort that out has been a morass of long phone calls on hold and in-person trips seeking an appointment.

Before 2025, getting the agency to process changes was usually straightforward, her lawyer said. Not anymore.

The need is dire. If the agency halts the niece’s disability payments, “then she will be homeless,” Seda recalled telling an agency employee. “I don’t know if I’m going to survive this cancer or not, but there is nobody else to help her.”

Some of the problems are technological. According to whistleblower information provided to Democrats on the House Oversight Committee, the agency’s efforts to process certain data have been failing more frequently. When that happens, “it can delay or even stop payments to Social Security recipients,” the committee recently told the agency’s inspector general.

While tech experts and former Social Security officials warn about the potential for a complete system crash, day-to-day decay can be an insidious and serious problem, said Kathleen Romig, formerly of the Social Security Administration and its advisory board and currently the director of Social Security and disability policy at the Center on Budget and Policy Priorities. Beneficiaries could struggle to get appointments or the money they’re owed, she said.

For its more than 70 million beneficiaries nationwide, Social Security is crucial. More than a third of recipients said they wouldn’t be able to afford necessities if the checks stopped coming, according to National Academy of Social Insurance survey results published in January.

Advocates and lawyers say lately Social Security is failing to deliver, to a degree that’s nearly unprecedented in their experience.

Carolyn Villers, executive director of the Massachusetts Senior Action Council, said two of her members’ March payments were several days late. “For one member that meant not being able to pay rent on time,” she said. “The delayed payment is not something I’ve heard in the last 20 years.”

When KFF Health News presented the agency with questions, Social Security officials passed them off to the White House. White House spokesperson Elizabeth Huston referred to Trump’s “resounding mandate” to make government more efficient.

“He has promised to protect social security, and every recipient will continue to receive their benefits,” Huston said in an email. She did not provide specific, on-the-record responses to questions.

Complaints about missed payments are mushrooming. The Arizona attorney general’s office had received approximately 40 complaints related to delayed or disrupted payments by early April, spokesperson Richie Taylor told KFF Health News.

A Connecticut agency assisting people on Medicare said complaints related to Social Security — which often helps administer payments and enroll patients in the government insurance program primarily for those over age 65 — had nearly doubled in March compared with last year.

Lawyers representing beneficiaries say that, while the historically underfunded agency has always had its share of errors and inefficiencies, it’s getting worse as experienced employees have been let go.

“We’re seeing more mistakes being made,” said James Ratchford, a lawyer in West Virginia with 17 years’ experience representing Social Security beneficiaries. “We’re seeing more things get dropped.”

What gets dropped, sometimes, are records of basic transactions. Kim Beavers of Independence, Missouri, tried to complete a periodic ritual in February: filling out a disability update form saying she remains unable to work. But her scheduled payments in March and April didn’t show.

She got an in-person appointment to untangle the problem — only to be told there was no record of her submission, despite her showing printouts of the relevant documents to the agency representative. Beavers has a new appointment scheduled for May, she said.

Social Security employees frequently cite missing records to explain their inability to solve problems when they meet with lawyers and beneficiaries. A disability lawyer whose firm’s policy does not allow them to be named had a particularly puzzling case: One client, a longtime Social Security disability recipient, had her benefits reassessed. After winning on appeal, the lawyer went back to the agency to have the payments restored — the recipient had been going without since February. But there was nothing there.

“To be told they’ve never been paid benefits before is just chaos, right? Unconditional chaos,” the lawyer said.

Researchers and lawyers say they have a suspicion about what’s behind the problems at Social Security: the Elon Musk-led effort to revamp the agency.

Some 7,000 SSA employees have reportedly been let go; O’Malley has estimated that 3,000 more would leave the agency. “As the workloads go up, the demoralization becomes deeper, and people burn out and leave,” he predicted in an April hearing held by House Democrats. “It’s going to mean that if you go to a field office, you’re going to see a heck of a lot more empty, closed windows.”

The departures have hit the agency’s regional payment centers hard. These centers help process and adjudicate some cases. It’s the type of behind-the-scenes work in which “the problems surface first,” Romig said. But if the staff doesn’t have enough time, “those things languish.”

Languishing can mean, in some cases, getting dropped by important programs like Medicare. Social Security often automatically deducts premiums, or otherwise administers payments, for the health program.

Lately, Melanie Lambert, a senior advocate at the Center for Medicare Advocacy, has seen an increasing number of cases in which the agency determines beneficiaries owe money to Medicare. The cash is sent to the payment centers, she said. And the checks “just sit there.”

Beneficiaries lose Medicare, and “those terminations also tend to happen sooner than they should, based on Social Security’s own rules,” putting people into a bureaucratic maze, Lambert said.

Employees’ technology is more often on the fritz. “There’s issues every single day with our system. Every day, at a certain time, our system would go down automatically,” said Glasgow, of Social Security’s Schenectady office. Those problems began in mid-March, he said.

The new problems leave Glasgow suspecting the worst. “It’s more work for less bodies, which will eventually hype up the inefficiency of our job and make us, make the agency, look as though it’s underperforming, and then a closer step to the privatization of the agency,” he said.

Jodie Fleischer of Cox Media Group contributed to this report.

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The Trump administration’s unprecedented $500 million grant for a broadly protective flu shot has confounded vaccine and pandemic preparedness experts, who said the project was in early stages, relied on old technology, and was just one of more than 200 such efforts.

Health and Human Services Secretary Robert F. Kennedy Jr. shifted the money from a pandemic preparedness fund to a vaccine development program led by two scientists whom the administration recently named to senior positions at the National Institutes of Health.

While some experts were pleased that Kennedy had supported any vaccine project, they said the May 1 announcement contravened sound scientific policy, appeared arbitrary, and raised the kinds of questions about conflicts of interest that have dogged many of President Donald Trump’s actions.

Focusing vast resources on a single vaccine candidate “is a little like going to the Kentucky Derby and putting all your money on one horse,” said William Schaffner, a Vanderbilt University professor and past president of the National Foundation for Infectious Diseases. “In science we normally put money on a number of different horses because we can’t be entirely sure who’s going to win.”

Others were mystified by the decision, since the candidate vaccine uses technology that was largely abandoned in the 1970s and eschews techniques developed in recent decades through funding from the Department of Health and Human Services and the Defense Department.

“This is not a next-generation vaccine,” said Rick Bright, who led HHS’ Biomedical Advanced Research and Development Authority, or BARDA, in the first Trump administration. “It’s so last-generation, or first-generation, it’s mind-blowing.”

The vaccine is being developed at the National Institute for Allergy and Infectious Diseases by Jeffery Taubenberger, whom Trump named as acting chief of the institute in late April, and his colleague Matthew Memoli, a critic of U.S. covid-19 policy whom Trump picked to lead the NIH until April 1, when Jay Bhattacharya took office. Bhattacharya named Memoli his principal deputy.

Taubenberger gained fame as an Armed Forces Institute of Pathology scientist in 1997 when his lab sequenced the genome of the 1918 pandemic influenza virus, using tissue samples from U.S. troops who died in that plague. He joined the NIH in 2006.

In a May 1 news release, HHS called the Taubenberger-Memoli vaccine initiative “Generation Gold Standard,” saying it represented “a decisive shift toward transparency, effectiveness, and comprehensive preparedness.” Bhattacharya said it represented a “paradigm shift.”

But the NIH vaccine-makers’ goal of creating a shot that protects against multiple or all strains of influenza — currently vaccines must be given each year to account for shifts in the virus — is not new.

Then-NIAID Director Anthony Fauci launched a network of academic researchers in pursuit of a broadly protective flu vaccine in 2019. In addition to that NIH-led consortium, more than 200 flu vaccines are under development in the U.S. and other countries.

Many use newer technologies, and some are at more advanced stages of human testing than the Taubenberger vaccine, whose approach appears basically the same as the one used in flu vaccines starting in 1944, Bright said.

In the news release, HHS described the vaccine as “in advanced trials” and said it would induce “robust” responses and “long-lasting protection.” But Taubenberger and his colleagues haven’t published a complete human study of the vaccine yet. A study showing the vaccine protected mice from the flu appeared in 2022.

For Operation Warp Speed, which led to the creation of the covid vaccine during Trump’s first term, government scientists reviewed detailed plans and data from academic and commercial laboratories vying for federal money, said Greg Poland, a flu expert and president of the Atria Health Academy of Science and Medicine. “If that’s happening here, it’s opaque to me,” he said.

When asked what data beyond its press release supported the decision, HHS spokesperson Andrew Nixon pointed to the agency’s one-page statement. Asked whether the decision would curtail funding for the Fauci-created consortium or other universal vaccine approaches, Nixon did not specifically respond. “Generation Gold Standard is the most promising,” he said in an email.

Taubenberger did not respond to a request for comment. Nixon and NIH spokesperson Amanda Fine did not respond to requests for an interview with Taubenberger or Memoli.

The HHS statement stressed that by developing the vaccine in-house, the government “ensures radical transparency, public accountability, and freedom from commercial conflicts of interest.” While any vaccine would eventually have to be made commercially, NIH involvement through more stages of development could give the government greater influence on any vaccine’s eventual price, Schaffner said.

If the mRNA-based covid shots produced by Moderna and Pfizer-BioNTech represented the cutting edge of vaccine technology, applying ultra-sophisticated approaches never before seen in an inoculation, the approach by Taubenberger and Memoli represents a blast from the past.

Their vaccine is made by inactivating influenza viruses with a carcinogenic chemical called beta-propiolactone. Scientists have used the chemical to neutralize viruses since at least the 1950s. This whole-virus inactivation method, mostly using other chemicals, was the standard way to make flu vaccines into the 1970s, when it was modified, partly because whole-virus vaccines caused high fevers or even seizures in children.

The limited published data from the Taubenberger vaccine, from an initial safety trial involving 45 patients, showed no major side effects. The scientists are testing the vaccine as a regular shot and as an intranasal spray with the idea of stopping the virus in the respiratory tract before it causes a broad infection.

“The notion of a universal influenza A pandemic vaccine is a good one,” said Poland, who called Taubenberger an excellent scientist. But he added: “I’m not so sure about the platform, and the dollar amount is a puzzler. This vaccine’s in very early development.”

Paul Friedrichs, a retired Air Force general who led the Office of Pandemic Preparedness and Response Policy in President Joe Biden’s White House, said that “giving $500 million upfront with very little data to support it is unlike anything I’ve ever seen.”

“The technology for developing vaccines has tremendously evolved over many decades,” Friedrichs said. “Why would we go back to an approach historically associated with greater or more frequent adverse events?”

The government appeared to be transferring the money for the Taubenberger vaccine development from an existing $1.3 billion vaccine fund at Project NextGen, a mostly covid-focused program at BARDA, Friedrichs said. Most of that money was earmarked to support advanced research on covid and other viral vaccines, including those protecting against emerging diseases.

It is “very concerning that we’re de-emphasizing covid, which we may live to regret,” Poland said. “It assumes we won’t have a covid variant that escapes the current moderately high levels of covid immunity.”

Nixon said Project NextGen, for which some funds were earmarked for mRNA research, is under review. Kennedy is critical of mRNA vaccines, once claiming, falsely, that they are the deadliest vaccines in history.

Ted Ross, director of global vaccine development at the Cleveland Clinic, said he was “happy to see them investing in respiratory vaccines, including a universal flu vaccine, with all the programs they’ve been cutting.”

“But I don’t think this is the only approach,” Ross said. “Other universal flu vaccines are in progress, and their success and failure are not known yet.”

His team, part of the NIAID-funded flu vaccine consortium, is using artificial intelligence and computer modeling to design vaccines that produce the broadest immunity to influenza, including seasonal and pandemic strains.

As interim director, Memoli oversaw the start of the administration’s massive cuts at the NIH, with the elimination of some 800 agency grants worth over $2 billion. More than 1,200 NIH employees have been fired, and many researchers, including Ross, are in limbo.

His lab is close to testing a candidate vaccine on people, Ross said, while waiting to find out about its NIH funding. “I’m not sure whether my contract is on the chopping block,” he said.

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The FDA has rehired at least some workers tasked with releasing public records generated by the agency’s regulatory activities, two employees said. The recall reverses firings carried out roughly a month ago by the Department of Health and Human Services, which oversees the agency.

Workers who process records about medical device and tobacco regulation under the Freedom of Information Act received notices from an FDA official May 1 that they were no longer being fired as part of the department’s mass layoffs, according to the employees and documents reviewed by KFF Health News, which agreed not to name the workers because they are not authorized to speak to the press and fear retaliation.

The workers were told to return to their jobs immediately.

As part of its plans to shrink HHS by 20,000 people, officials announced in late March that 10,000 employees would be laid off across the department, which includes the Centers for Medicare & Medicaid Services, the Centers for Disease Control and Prevention, the National Institutes of Health, and the FDA. More than one-third of the layoffs, 3,500, affected FDA staffers. Those firings gutted the FOIA divisions across HHS.

The layoffs decimated the workforce that processes FOIA requests across FDA centers overseeing vaccines, drugs, tobacco, medical devices, and food, said current and former employees. Operations to release public records requests largely ground to a halt, according to half a dozen current or former employees. Employees said FOIA workers were fired despite being involved in furnishing government records under court-ordered deadlines in response to litigation.

A notice from FDA to an affected FOIA staffer said the HHS’ “Reduction in Force” was being rescinded but did not provide a rationale for reinstatement, according to a copy viewed by KFF Health News. However, the worker said an FDA official had told them their job was “mission critical.”

Two current or former employees noted that the FDA missed several court-ordered deadlines to produce documents in April. Other FOIA workers were told they were being reinstated, two employees said.

HHS officials didn’t respond to a request for comment.

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

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

The decision to bring back at least some FOIA staff occurred after HHS Secretary Robert F. Kennedy Jr. said officials were “restoring all the FOIA offices.” Earlier this year, HHS also laid off the entire CDC office handling that agency’s FOIA requests and significantly cut FOIA staff at the NIH.

“We’re going to make it much easier for people to get the information. We’re going to try to post as much as we can,” he said on April 22.

The HHS decision to decimate FOIA staff spurred at least one lawsuit and pushback — from Rep. Gerry Connolly (D-Va.), who sent a letter to CDC on April 24 about the firings.

CDC FOIA staff had not been reinstated as of Friday morning, one employee said. In a May 1 court filing as part of a lawsuit challenging those firings, Edward Martin, interim U.S. attorney for the District of Columbia, said the CDC and HHS “have not abandoned any of its obligations under FOIA and instead is undergoing a re-structure pursuant to a valid Executive Order.” Martin said that “streamlining inefficient operations will benefit the public by enhancing transparency and accountability to the taxpayer.”

The filing was submitted as part of a lawsuit brought in April by Citizens for Responsibility and Ethics in Washington, a legal advocacy group.

During fiscal year 2024 — October 2023 through September 2024 — the FDA provided at least some records in response to more than 12,000 requests, according to HHS’ annual FOIA report.

There were exceptions to the mass layoffs of FOIA employees, however. The cuts at FDA spared at least some workers furnishing records in response to court orders in FOIA lawsuits involving the agency’s vaccines division, which includes litigation brought by an ally of Kennedy’s who represents anti-vaccine interests, according to four current or former agency employees.

Lawyer Aaron Siri filed the FOIA lawsuits, on behalf of the nonprofit Public Health and Medical Professionals for Transparency, in 2021 and 2022 against the FDA to obtain records related to Pfizer’s and Moderna’s covid-19 vaccines. Siri was Kennedy’s lawyer during his 2024 presidential campaign and has represented prominent anti-vaccine activists in numerous lawsuits.

The FDA faces a June 30 court-ordered deadline to finish releasing documents in those cases.

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

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The country’s top nonpartisan government watchdog has confirmed it is examining the costs of running the nation’s only active Medicaid work requirement program, as Republican state and federal lawmakers consider similar requirements.

The U.S. Government Accountability Office told KFF Health News that its analysis of the Georgia Pathways to Coverage program could be released this fall.

In its first 100 days, the Trump administration has said rooting out waste in federal programs was a priority, allowing billionaire Elon Musk and the newly created Department of Government Efficiency broad latitude to fundamentally alter the operations of federal agencies.

The idea of a nationwide mandate that requires Medicaid enrollees to either work, study, or complete other qualifying activities to maintain coverage is gaining traction as congressional Republicans weigh proposals to cut $880 billion from the federal deficit over 10 years. The savings are intended to offset the costs of President Donald Trump’s priorities, including border security and tax cuts that would largely benefit the wealthy.

A majority of the public — regardless of political leaning — oppose funding cuts to Medicaid, according to polling released May 1 by KFF, a health information nonprofit that includes KFF Health News.

The GAO investigation comes at a critical time, said Leo Cuello, a research professor at Georgetown University’s Center for Children and Families.

“Congress seems to be pursuing cuts in Medicaid in a frenetic and rushed manner,” he said. The GAO report could outline for Congress the full extent of problems with work requirements “before they rush forward and do this without thinking.”

The experiences of Georgia and Arkansas — the only two states to have run such programs — show that work requirements depress Medicaid enrollment while adding costly layers of bureaucracy.

Now, more states are trying to get signoff from the Trump administration to approve work requirements for Medicaid, the state-federal program that offers health coverage to millions of Americans with low-incomes and disabilities.

The Centers for Medicare & Medicaid Services, which approves Medicaid pilot programs such as work requirements, did not respond to a request for comment by publication.

The GAO found in 2019 that work requirement programs can be expensive for states to run — hundreds of millions of dollars, in some cases — and that federal officials failed to consider those costs when approving the programs, which cannot increase Medicaid spending.

Still, the Trump administration has supported work requirements. The programs require state employees to manually verify whether enrollees meet eligibility requirements and monitor their continued compliance.

In 2023, more than 90% of U.S. adults eligible for Medicaid expansion were already working or could be exempt from requirements, according to KFF.

During his confirmation hearing to lead CMS, Mehmet Oz said he was in favor of work requirements but didn’t think they should be used as “an obstacle, a disingenuous effort to block people from getting on Medicaid.”

The first Trump administration approved work requirements in 13 states. Nearly all the programs were blocked by the Biden administration or federal courts.

Georgia is one of 10 states that hasn’t fully expanded Medicaid to nearly all low-income adults.

The state launched Pathways to Coverage on July 1, 2023. It’s been a main policy priority of Republican Gov. Brian Kemp, whose office engaged in a lengthy court fight with the Biden administration after it tried to block the program.

The program cost more than $57 million in state and federal dollars through the end of 2024, with much of that going toward its administration. As of April 25, 7,410 people were enrolled, a small percentage of those who would be covered by a full Medicaid expansion. Pathways has also slowed processing times for other benefit programs in the state.

When asked about the costs and benefits of Pathways, Kemp spokesperson Garrison Douglas instead pointed to Georgia’s recently launched state-based Obamacare exchange. It saw record enrollment due, in part, to enhanced subsidies passed by the Biden administration.

“We are covering more Georgians than traditional Medicaid expansion would have, and for less money,” said Douglas, referring to the state, not federal, share of spending.

The enhanced subsidies that boosted enrollment are set to expire this year. The Congressional Budget Office estimates that extending them would cost the federal government about $335 billion over 10 years.

In March, Arkansas asked the Trump administration to relaunch its Medicaid work requirement program. The federal public comment period on the program runs through May 10. A previous version was halted by a court order in 2019, but not before more than 18,000 lost coverage in less than a year.

Georgia plans to request that the White House renew its program with modest changes, including reducing how frequently enrollees must prove to the state they’re working or engaging in other qualifying activities.

The GAO investigation into Georgia’s work requirement program comes after three Democratic U.S. senators — Jon Ossoff and Raphael Warnock of Georgia and Ron Wyden of Oregon — asked the GAO in December for an investigation into the program’s costs. Their request cited reporting by KFF Health News.

“I pushed for this GAO report because I am confident its findings will further support what we already know: Pathways to Coverage costs the taxpayers more money and covers fewer people than had the state simply joined 40 other states in closing the health care coverage gap,” Warnock said in a statement.

The GAO said it aims to figure out how much Georgia has spent to run the program, how much of that was federal money, and how that spending is being tracked.

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El principal organismo no partidario de control gubernamental del país ha confirmado que está examinando los costos de operar el único programa de Medicaid activo con requisito de trabajo, mientras legisladores republicanos estatales y federales consideran requisitos similares.

La Oficina de Responsabilidad Gubernamental de Estados Unidos (GAO) informó a KFF Health News que su análisis del programa Georgia Pathways to Coverage podría publicarse este otoño.

En sus primeros 100 días, la administración Trump ha afirmado que eliminar el despilfarro en los programas federales era una prioridad, lo que ha permitido al multimillonario Elon Musk y al recién creado Departamento de Eficiencia Gubernamental (DOGE) un amplio margen de maniobra para modificar radicalmente las operaciones de las agencias federales.

La idea de un mandato nacional que requiera que los beneficiarios de Medicaid trabajen, estudien o realicen otras actividades que cumplan los requisitos para mantener la cobertura está ganando terreno a medida que los republicanos del Congreso evalúan propuestas para recortar $880 mil millones del déficit federal a lo largo de 10 años.

Estos ahorros buscan compensar los costos de las prioridades del presidente Donald Trump, incluyendo la seguridad fronteriza y los recortes de impuestos que beneficiarían en gran medida a los más ricos.

La mayoría del público, independientemente de su orientación política, se opone a los recortes de fondos a Medicaid, según una encuesta publicada el 1 de mayo por KFF, la organización sin fines de lucro dedicada a la información sobre salud que incluye a KFF Health News.

La investigación de la GAO llega en un momento crítico, afirmó Leo Cuello, profesor de investigación del Centro para Niños y Familias de la Universidad de Georgetown.

“El Congreso parece estar implementando recortes a Medicaid de forma frenética y apresurada”, afirmó. El informe de la GAO podría explicar al Congreso la magnitud de los problemas con los requisitos de trabajo “antes de que se apresuren y lo hagan sin pensar”.

Las experiencias de Georgia y Arkansas, los dos únicos estados que han implementado programas similares, demuestran que los requisitos de trabajo reducen la inscripción en Medicaid y agregan costosas capas de burocracia.

Ahora, más estados intentan obtener la aprobación de la administración Trump para aprobar los requisitos de trabajo para Medicaid, el programa estatal-federal que ofrece cobertura médica a millones de estadounidenses con bajos ingresos y discapacidades.

Los Centros de Servicios de Medicare y Medicaid (CMS), que aprueban programas piloto de Medicaid, como los de requisitos de trabajo, no respondieron a una solicitud de comentarios.

La GAO descubrió en 2019 que la gestión de los programas de requisitos laborales puede resultar costosa para los estados (cientos de millones de dólares, en algunos casos) y que los funcionarios federales no consideraron esos costos al aprobarlos, lo que no puede aumentar el gasto de Medicaid.

Aun así, la administración Trump ha apoyado los requisitos laborales. Estos programas exigen que los empleados estatales verifiquen manualmente si los beneficiarios cumplen con los requisitos de elegibilidad y supervisen su cumplimiento continuo.

En 2023, más del 90% de los adultos estadounidenses elegibles para la expansión de Medicaid ya trabajaban o podrían estar exentos de los requisitos, según KFF.

Durante su audiencia de confirmación para dirigir los CMS, Mehmet Oz afirmó estar a favor de los requisitos laborales, pero no creía que debieran utilizarse como “un obstáculo, un intento engañoso de impedir que las personas accedan a Medicaid”.

La primera administración Trump aprobó los requisitos laborales en 13 estados. Casi todos los programas fueron bloqueados por la administración Biden o por tribunales federales.

Georgia es uno de los 10 estados que no ha expandido completamente Medicaid a casi todos los adultos de bajos ingresos.

El estado lanzó Pathways to Coverage el 1 de julio de 2023. Ha sido una prioridad política del gobernador republicano Brian Kemp, cuya oficina se vio envuelta en una larga batalla legal con la administración Biden cuando intentó bloquear el programa.

El programa costó más de $57 millones estatales y federales hasta finales de 2024, gran parte de los cuales se destinó a administrarlo. Al 25 de abril, 7.410 personas estaban inscritas, un pequeño porcentaje de las que estarían cubiertas por una expansión total de Medicaid. Pathways también ha ralentizado los tiempos de procesamiento para otros programas de beneficios en el estado.

Al ser consultado sobre los costos y beneficios de Pathways, Garrison Douglas, vocero de Kemp, señaló el reciente mercado estatal de Obamacare en Georgia. Este registró una inscripción récord debido, en parte, a la mejora de los subsidios aprobada por la administración Biden.

“Estamos cubriendo a más georgianos de lo que habría cubierto la expansión tradicional de Medicaid, y por menos dinero”, dijo Douglas, refiriéndose a la parte estatal, no federal, del gasto.

Los subsidios mejorados que impulsaron la inscripción expirarán este año. La Oficina de Presupuesto del Congreso estima que extenderlos costaría al gobierno federal alrededor de $335 mil millones en 10 años.

En marzo, Arkansas solicitó a la administración Trump que relanzara su programa de requisitos de trabajo de Medicaid. El período federal de comentarios públicos sobre el programa finaliza el 10 de mayo. Una versión anterior fue suspendida por una orden judicial en 2019, pero no antes de que más de 18.000 personas perdieran su cobertura en menos de un año.

Georgia planea solicitar a la Casa Blanca que renueve su programa con cambios modestos, incluyendo la reducción de la frecuencia con la que los inscritos deben demostrar al estado que están trabajando o participando en otras actividades calificadas.

La investigación de la GAO sobre el programa de requisitos de trabajo de Georgia se produce después de que tres senadores demócratas estadounidenses —Jon Ossoff y Raphael Warnock, de Georgia, y Ron Wyden, de Oregon— solicitaran a la GAO en diciembre una investigación sobre los costos del programa. Su solicitud citaba un informe de KFF Health News.

“Impulsé este informe de la GAO porque confío en que sus hallazgos respaldarán aún más lo que ya sabemos: Pathways to Coverage cuesta más dinero a los contribuyentes y cubre a menos personas que si el estado simplemente se uniera a otros 40 estados para cerrar la brecha en la cobertura médica”, declaró Warnock en un comunicado.

La GAO afirmó que su objetivo es determinar cuánto ha gastado Georgia en la gestión del programa, cuánto de ese dinero fue federal y cómo se está monitoreando ese gasto.

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Sumana Reddy, a primary care physician, struggles on thin financial margins to run Acacia Family Medical Group, the small independent practice she founded 27 years ago in Salinas, a predominantly Latino city in an agricultural valley often called “the salad bowl of the world.”

Reddy can’t match the salaries offered by larger health systems — a difficulty compounded by a widespread shortage of primary care doctors.

The shortage is tied largely to the lower pay and relative lack of prestige associated with primary care, making recruitment difficult. “It certainly is challenging to expose medical students early in their careers to the joys of this kind of integrated health care,” Reddy said. “The relationships we build and the care we provide truly allow people to live longer with a better quality of life.”

Hoping to increase revenue so Acacia can afford to pay more, Reddy has signed the practice up for alternative payment methods with health plans that offer bonuses for meeting certain primary care goals tied to child vaccinations, blood pressure control, and screenings for breast cancer, colorectal cancer, and mental health. Such pay-for-performance arrangements are among the many efforts by industry players and state officials to confront the problems plaguing primary care.

Medical students frequently opt not to go into primary care, and that’s not good for patients. People with regular primary care providers are more likely to get preventive care that avoids serious illnesses and feel more empowered to advocate for themselves. They’re also less likely to encounter language barriers, resort to costly emergency room visits, or forgo care.

Six years after the influential California Future Health Workforce Commission made a series of recommendations to plug a projected shortage of 4,100 primary care providers in 2030, a number of public and private initiatives have proliferated around the state to address the problem. They include new residency slots, debt forgiveness, waived medical school tuition, new ways of paying doctors, expanded nurse practitioner roles, and a statewide target to increase primary care spending. Hundreds of millions of taxpayer dollars have been allocated for some of these efforts.

But numerous academic experts and medical professionals believe those moves, while well intended, have been scattershot and insufficient. “The pieces are there,” said Monica Soni, chief medical officer of Covered California, the state’s Affordable Care Act health insurance marketplace. “I am worried we started a little too late, and I think it’s a little too siloed.”

A study published in 2022 by the California Health Care Foundation found that substantial progress had been made on some of those goals, including recruitment of students from low-income households and communities of color. A separate analysis from the foundation showed that, from 2020 to 2023, California jumped about 10 spots in a ranking of states by primary care residents and fellows per capita.

However, the latest state data shows nearly 15 million Californians live in areas without enough primary care providers to meet patient needs.

State budget constraints and potential federal spending cuts, especially to Medicaid, could exacerbate shortages in areas already desperate for clinicians and dampen hopes of building a robust primary care system that state officials and virtually everyone in the industry agree would be a strong defense against serious — and costly — illnesses. Federal cuts could also hit medical training and hospital systems.

“Many of us are very scared about threats from both the Trump administration and Republicans in Congress,” said Kevin Grumbach, a family community medicine professor at the University of California-San Francisco.

Acute Primary Care Shortages

California’s lack of primary care providers, including doctors, nurse practitioners, and physician assistants, is most acute in rural parts of the state, particularly in the north and the Central Valley. Entire rural counties, including Del Norte, Madera, Tulare, and Yuba, are designated shortage areas, according to state data. Some densely populated urban areas, including parts of Los Angeles, also confront shortages.

Many Californians face months-long waits for appointments or have to travel long distances or go to emergency rooms for nonurgent medical needs, which means hours spent in crowded waiting rooms for unnecessarily expensive care.

In Chico, 90 miles north of Sacramento, the emergency room at the only hospital in town has seen a sharp increase in patients over the past decade, due in part to a lack of primary care providers in the area.

“People who don’t have a primary care provider — which is a lot, because there are not enough — end up in the ER when they need routine care,” said David Alonso, a local internal medicine doctor. “The ER then says, ‘OK, you should follow up with your primary care provider,’ and they’re like, ‘We don’t have one.’”

Yalda Jabbarpour, director of the Robert Graham Center for Policy Studies, a health policy think tank, said failure to invest robustly in primary care has robbed the public of its benefits.

The field has historically been underfunded, accounting for less than 5% of national health care spending in 2022, according to the Milbank Memorial Fund, a national nonprofit focused on population health and health equity.

The consequences are clear.

The U.S. spends significantly more per capita on health care than other industrialized nations, and yet Americans aren’t any healthier. Chronic conditions such as heart disease, diabetes, arthritis, and Alzheimer's, as well as mental illness, account for 90% of the $4.5 trillion spent on health care every year.

Medical students, often faced with staggering educational debt, are increasingly choosing higher-paid specialties over primary care. The average salary of a family medicine physician is slightly over $300,000, compared with more than $565,000 for a cardiologist and over $763,000 for a neurosurgeon, according to one study.

“If you are going to pay over $300,000 to go to medical school, you want to be a neurosurgeon; you don’t want to be a family practice doctor,” said William Barcellona, executive vice president of government affairs at America’s Physician Groups, a Los Angeles-based professional association representing 360 medical groups and independent practice associations nationwide.

Barcellona said the Golden State’s high housing costs also make recruiting difficult.

But it’s not only pay that tempers enthusiasm for primary care. It’s also burnout from so many unpaid hours spent recording details of medical visits in electronic health records; haggling with insurance companies for treatment authorization; answering phone calls and emails from patients; or searching far and wide — often in a health care desert — for specialists with the right expertise.

Debby Lee, the daughter of Hmong immigrants from Laos, experienced this kind of frustration firsthand.

Cultural and linguistic barriers faced by her family motivated her to pursue internal medicine. Lee worked part of her residency at a community clinic serving Hmong in the Sacramento area. She loved the patients, as well as her co-workers. But she was burdened by outdated technology that limited the number of patients she could see. “I just saw myself kind of burning out being in that setting,” Lee said.

When the clinic invited her to stay, she declined, taking a job with a bigger health system.

Solutions to the Shortage

Besides residencies, other efforts support primary care.

The Health Plan of San Mateo offers grants to help medical practices retain and add to primary care staff. In exchange, the practices — some single physicians serving patients in California’s Medicaid program, Medi-Cal — must show they have increased their patient load and retained newly hired providers for five years.

The idea is to provide capital so doctors can hire the staff they need to run their practices efficiently, increase salaries, offer bonuses, and even take sabbaticals. Such efforts are consistent with one of the main thrusts of the 2019 workforce report: to increase investment in primary care.

California recently joined several other states, including Connecticut, Oklahoma, and Rhode Island, in setting a target to increase primary care spending. So far, those policies have yielded mixed results.

Late last year, California’s Office of Health Care Affordability set a target to make primary care account for 15% of total health care spending by 2034, more than double the current proportion. It imposes no requirements, relying on the goodwill of health plans to work with medical providers.

Greater spending on primary care would mean better pay and more people working in the field, said Richard Kronick, a public health professor at UC-San Diego and a member of the OHCA board. “That’s a big change. Will it happen? I don’t think anyone can predict the future with any certainty.”

Stephen Shortell, a professor emeritus of health policy and management at UC-Berkeley, said “some of that increase might occur, but at some point, it might need to be made mandatory.”

In its report, the workforce commission also cited the importance of alternative forms of primary care payment that offer extra cash for quality care. The affordability office has set targets to encourage such payment methods. The aim is to transform the system from one in which every medical service has a price tag to one that treats people holistically, and in which adherence to medical standards brings more money to doctors and their office staff.

Such arrangements are common among HMOs, though less so in primary care practices. Where they do exist, different health plans and other payers generally design them differently, which means primary care practices manage multiple payment models, adding to their administrative burden.

Reddy’s family practice is participating in a one-year demonstration project launched in January intended to reduce that burden by having multiple insurers work together in one payment plan.

The project brings together three large insurers — Health Net, Aetna, and Blue Shield of California — and 10 independent practices across the state with the goal of improving care while boosting revenue for the medical groups. It is administered by two industry groups, the Integrated Healthcare Association and the California Quality Collaborative.

On top of customary payments, either for services rendered or monthly per-member allotments, the medical practices receive bonuses for meeting targets or improving their performance on core measures.

Participating practices also receive monthly per-patient payments for “population health management,” which means managing the collective health of their patients. And they can search a single platform to find all their patients covered by one of the three plans.

In addition to extra payments and fewer administrative hassles, the health plans pay for a “practice coach,” whose job is to help primary care groups meet their targets and provide more seamless care.

The idea is to add more insurers and medical groups over time, said Todd May, Health Net’s medical director for commercial health plans, who is among those driving the project. “In addition to better outcomes, we’d like to see a stronger, more robust, and more satisfied primary care workforce,” he said.

Reddy hopes she can increase Acacia’s revenue by 20%, using the extra money from this and other pay-for-performance arrangements. That, she said, would enable her to raise pay for her staff and hire clinicians.

For many years, her practice has limited the number of patients it has accepted. But after searching for the better part of five years, Reddy has hired a doctor on a half-time basis and another is coming on board in June.

“This is the most hopeful I have felt in decades,” Reddy said.

Phillip Reese contributed to this report.

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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When a woman collapsed on an escalator at the Buffalo, New York, airport last June, Phil Clough knew what to do. He and another bystander put her flat on her back and checked her pulse (faint) and her breathing (shallow and erratic). Then she stopped breathing altogether. Realizing that she might be having a cardiac arrest, Clough immediately started doing chest compressions, pressing hard and quickly on the center of her chest, while others nearby called 911 and ran to get an automated external defibrillator. Within seconds of receiving a shock from the AED, the woman opened her eyes. By the time the airport rescue team arrived a few minutes later, she was conscious and able to talk with rescuers.

“I don’t want to ever feel helpless,” said Clough, who had flown to Buffalo that evening on a work trip for his engineering job in Denver. After an incident several years earlier in which he was unsure how to help a woman who collapsed at his gym, he took a college course to get certified as an emergency medical responder, who can provide basic life support interventions.

The woman who collapsed was lucky: She lost consciousness in a public place where bystanders knew how to help her. Most people aren’t so fortunate. In the United States, a lack of training and readiness to deal with this relatively common medical emergency contributes to thousands of deaths a year.

More than 350,000 cardiac arrests occur outside of a hospital setting in the United States annually, according to the American Heart Association. In 9 of 10 cases, the person dies because help doesn’t arrive quickly enough. Every minute that passes without intervention reduces the odds of survival by 10%. But if someone immediately receives cardiopulmonary resuscitation and an AED shock, if needed, their survival odds can double or even triple.

Fewer than half of people get that immediate help, according to the heart association. A cardiac arrest occurs when the heart stops suddenly, often because the heart’s electrical system malfunctions. About 70% of cardiac arrests occur at home. But even if someone collapses in a public place and an ambulance is called immediately, it takes roughly eight minutes, on average, for emergency personnel to arrive. In rural areas it can take much longer.

When someone has a cardiac arrest, they often require an electric shock from an AED to get their heart started again. These portable devices analyze the heart’s rhythm and instruct the user to deliver a shock, if necessary, through pads placed on the victim’s chest.

But although many states require that AEDs be available in public places such as airports, malls, and schools, they often aren’t easy to spot. A study of data from 2019 to 2022 found that after a cardiac arrest in a public place, bystanders used an AED 7% of the time and performed CPR 42% of the time.

The most comprehensive resource for identifying AEDs is a nonprofit foundation called PulsePoint, which has registered 185,000 AEDs in 5,400 communities in the United States, according to Shannon Smith, vice president of communications at PulsePoint. If requested, the organization will help a community build its AED registry and connect it to the area’s 911 service free of charge.

PulsePoint recently launched a national AED registry to further this effort.

Through a companion app, users trained in CPR can volunteer to be alerted to potential cardiac arrests within roughly a quarter-mile when calls come into a community’s emergency response dispatch service. The app also identifies registered AEDs nearby.

“PulsePoint is the closest thing we have to a national registry,” said Elijah White, president of the acute care technology division at Zoll, a leading AED manufacturer. The company has provided location information for all its AEDs to PulsePoint. Still, PulsePoint has registered only a fraction of AEDs in the country. “It’s just a start,” White said.

Other factors may also keep bystanders from stepping in to help. They may lack CPR training or confidence, or fear liability if something goes wrong.

Liability shouldn’t be a concern, in general. All 50 states and Washington, D.C., have “good Samaritan” laws that protect bystanders from legal liability if they intervene in a medical emergency in good faith.

But training can be a serious barrier. One study found that only 18% of people reported that they’d received CPR training within the previous two years, a key time frame for skills maintenance. Two-thirds of people reported having been trained at some point.

One way to boost training is to make it mandatory, and many states require that students receive CPR training to graduate. But even though 86% of high school students reported having received some training, only 58% said they knew how to apply their skills, and a similar proportion said they knew how to use an AED.

“We’ve got some work to do,” said Dianne Atkins, a pediatric cardiologist and longtime AHA volunteer, who said ensuring high school training is a top priority for the AHA.

Other countries have prioritized training their residents in AED use and CPR for many years, with some success.

In Denmark, such training has been required to get a driver’s license since the 2000s, and middle schoolers are also required to be trained. And in a survey, 45% of the population reported having received training through their workplace. In the study, 81% of respondents in the general public reported having been trained in CPR and 54% in how to use an AED.

Norway has provided first-aid training in primary schools since 1961 and mandates CPR training to receive a driver’s license. Ninety percent of the population reported they are trained in CPR.

In the United States,  many training courses are available, online and in person, that take only a few hours to complete. For someone who’s never learned basic life-support skills, the training can be eye-opening. This previously untrained reporter was taken aback to discover how forcefully and rapidly someone must press on a mannequin’s chest to do CPR correctly: 100 to 120 compressions a minute to a depth of at least 2 inches.

The most important thing is for ordinary people to know the basics well enough that “they would feel confident to call 911 and push hard and fast on someone’s chest,” said Audrey Blewer, an assistant professor of family medicine and community health at Duke University School of Medicine who has published numerous studies on bystander CPR and AED use. “That doesn’t require a certification card and recent training.”

During an emergency, 911 dispatchers can also play a crucial role in walking people through doing CPR and operating an AED, said David Hiltz, volunteer program director of the HeartSafe Communities program at the Citizen CPR Foundation, a nonprofit that works to improve cardiac arrest survival through training and education.

Phil Clough has stayed in touch with Rebecca Sada, the woman who collapsed at the Buffalo airport that June day as she was coming home from a trip to visit her daughter. Sada, who had no history of heart trouble before her cardiac arrest, now has an automated defibrillator implanted in her chest to stabilize a previously undiagnosed electrical problem with her heart. She and her husband have had Clough over for dinner, and they are friends for life, she said.

One other change that occurred as a result of Sada’s cardiac arrest: She and her husband got certified in CPR and AED.

“Now, if we needed to help someone down the road, we’d be able to,” Sada said.

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Cuando una mujer se desplomó en una escalera mecánica en el aeropuerto de Buffalo, en Nueva York, el pasado junio, Phil Clough supo qué hacer.

Él y otro transeúnte la colocaron boca arriba y le revisaron el pulso (débil) y la respiración (superficial y errática). Luego dejó de respirar por completo. Al darse cuenta de que podría estar sufriendo un paro cardíaco, Clough comenzó de inmediato a realizar compresiones torácicas, presionando con fuerza y ​​rapidez en el centro del pecho, mientras otras personas llamaban al 911 y corrían a buscar un desfibrilador externo automático (DEA).

A los pocos segundos de recibir la descarga del DEA, la mujer abrió los ojos. Para cuando llegó el equipo de rescate del aeropuerto, unos minutos después, estaba consciente y podía hablar con los rescatistas.

“No quiero sentirme indefenso nunca”, dijo Clough, quien había volado a Buffalo esa noche en un viaje de trabajo por su puesto de ingeniería en Denver. Tras un incidente varios años antes, en el que no estaba seguro de cómo ayudar a una mujer que se desplomó en su gimnasio, realizó un curso universitario para certificarse como socorrista médico de emergencia, que puede brindar intervenciones de soporte vital básico.

La mujer que se desplomó tuvo suerte: perdió el conocimiento en un lugar público donde los transeúntes supieron cómo ayudarla. La mayoría de las personas no tienen tanta suerte. En Estados Unidos, la falta de capacitación y preparación para abordar esta emergencia médica relativamente común contribuye a miles de muertes al año.

Según la Asociación Americana del Corazón (AHA), en Estados Unidos ocurren más de 350.000 paros cardíacos cada año fuera del ámbito hospitalario. En 9 de cada 10 casos, la persona muere porque la ayuda no llega con la suficiente rapidez.

Cada minuto que se pasa sin intervención reduce las probabilidades de supervivencia en un 10%. Pero si alguien recibe inmediatamente reanimación cardiopulmonar y una descarga de DEA, si es necesario, sus probabilidades de supervivencia pueden duplicarse o incluso triplicarse.

Según la asociación del corazón, menos de la mitad de las personas reciben esa ayuda inmediata. Un paro cardíaco ocurre cuando el corazón se detiene repentinamente, generalmente debido a un mal funcionamiento del sistema eléctrico cardíaco.

Alrededor del 70% de los paros cardíacos ocurren en el hogar. Pero incluso si alguien se desmaya en un lugar público y se llama a una ambulancia al instante, el personal de emergencia tarda unos ocho minutos, en promedio, en llegar. En zonas rurales, puede tardar mucho más.

Cuando alguien sufre un paro cardíaco, a menudo necesita una descarga eléctrica de un DEA para que su corazón vuelva a latir. Estos dispositivos portátiles analizan el ritmo cardíaco e indican al usuario que administre una descarga, si es necesario, a través de parches colocados en el pecho de la víctima.

Pero aunque muchos estados exigen la disponibilidad de DEA en lugares públicos como aeropuertos, centros comerciales y escuelas, a menudo no son fáciles de localizar.

Un estudio con datos de 2019 a 2022 reveló que, tras un paro cardíaco en un lugar público, los transeúntes utilizaron un DEA el 7% de las veces y realizaron resucitación cardiopulmonary (RCP) el 42 % de las veces.

El recurso más completo para identificar un DEA es una fundación sin fines de lucro llamada PulsePoint, que ha registrado 185.000 desfibriladores en 5.400 comunidades en el país, según Shannon Smith, vicepresidenta de comunicaciones de PulsePoint. Si se solicita, la organización ayudará a una comunidad a crear su registro de DEA y a conectarlo al servicio de emergencias de la zona de forma gratuita.

PulsePoint lanzó recientemente un registro nacional de DEA para impulsar esta iniciativa.

A través de una aplicación complementaria, los usuarios con formación en RCP pueden ofrecerse como voluntarios para recibir alertas sobre posibles paros cardíacos en un radio de aproximadamente 400 metros cuando se reciben llamadas del servicio de respuesta a emergencias de la comunidad. La aplicación también identifica los DEA registrados en las cercanías.

“PulsePoint es lo más parecido a un registro nacional que tenemos”, dijo Elijah White, presidente de la división de tecnología de cuidados intensivos de Zoll, un fabricante líder de DEA. La empresa ha proporcionado a PulsePoint la información de ubicación de todos sus DEA. Aun así, PulsePoint solo ha registrado una pequeña parte de los DEA en el país.

“Es solo el comienzo”, expresó White. Otros factores también pueden impedir que los transeúntes intervengan para ayudar. Pueden carecer de formación o confianza en la RCP, o temer responsabilidades si algo sale mal.

En general, la responsabilidad no debería ser una preocupación. Los 50 estados y Washington, D.C., cuentan con leyes de “buen samaritano” que protegen a los transeúntes de la responsabilidad legal si intervienen de buena fe en una emergencia médica.

Sin embargo, la formación puede ser un obstáculo importante. Un estudio reveló que solo el 18% de las personas informaron haber recibido formación en RCP en los dos años anteriores, un período clave para el mantenimiento de las habilidades. Dos tercios de las personas informaron haber recibido formación en algún momento.

Una forma de impulsar la formación es volverla obligatoria, y muchos estados exigen que los estudiantes reciban formación en RCP para graduarse.

Sin embargo, aunque el 86% de los estudiantes de secundaria informaron haber recibido algún tipo de formación, solo el 58% dijo saber cómo aplicar sus habilidades, y una proporción similar afirmó saber usar un DEA.

“Tenemos trabajo por hacer”, dijo Dianne Atkins, cardióloga pediátrica y voluntaria de la AHA desde hace mucho tiempo, quien dijo que garantizar la capacitación en la escuela secundaria es una prioridad absoluta para la AHA.

Otros países han priorizado la capacitación de sus residentes en el uso de DEA y RCP durante muchos años, con cierto éxito.

En Dinamarca, esta capacitación es obligatoria para obtener el permiso de conducir desde la década del 2000, y los estudiantes de secundaria también deben recibir capacitación. En una encuesta, el 45% de la población declaró haber recibido capacitación en su lugar de trabajo. En el estudio, el 81% de los encuestados del público general declaró haber recibido capacitación en RCP y el 54% en el uso de un DEA.

Noruega imparte capacitación en primeros auxilios en escuelas primarias desde 1961 y exige la capacitación en RCP para obtener la licencia de conducir. El 90% de la población declaró haber recibido capacitación en RCP.

En Estados Unidos, hay muchos cursos de capacitación disponibles, en línea y presenciales, que se completan en solo unas horas. Para alguien que nunca ha aprendido habilidades básicas de soporte vital, la capacitación puede ser reveladora.

Esta reportera, sin formación previa, se sorprendió al descubrir la fuerza y ​​rapidez con la que se debe presionar el pecho de un maniquí para realizar la RCP correctamente: de 100 a 120 compresiones por minuto a una profundidad de al menos 5 cm.

Lo más importante es que la gente común conozca los fundamentos lo suficiente como para “sentirse segura de llamar al 911 y presionar fuerte y rápido el pecho de alguien”, afirmó Audrey Blewer, profesora adjunta de medicina familiar y salud comunitaria en la Facultad de Medicina de la Universidad de Duke, quien ha publicado numerosos estudios sobre la RCP por parte de desconocidos, y el uso del DEA. “Eso no requiere una tarjeta de certificación ni formación reciente”.

Durante una emergencia, los operadores del 911 también pueden desempeñar un papel crucial al guiar a las personas en la RCP y el manejo del DEA, explicó David Hiltz, director del programa de voluntarios HeartSafe Communities de la Citizen CPR Foundation, una organización sin fines de lucro que trabaja para mejorar la supervivencia tras un paro cardíaco mediante la formación y la educación.

Phil Clough se ha mantenido en contacto con Rebecca Sada, la mujer que se desplomó en el aeropuerto de Buffalo ese día de junio mientras regresaba a casa de un viaje para visitar a su hija. Sada, quien no tenía antecedentes de problemas cardíacos antes de sufrir un paro, ahora tiene un desfibrilador automático implantado en el pecho para estabilizar un problema eléctrico en su corazón que no se le había diagnosticado previamente. Ella y su esposo han invitado a Clough a cenar y son amigos para toda la vida, dijo.

Otro cambio que se produjo a raíz del paro cardíaco de Sada: ella y su esposo se certificaron en RCP y DEA.

“Ahora, si necesitáramos ayudar a alguien en el futuro, podríamos hacerlo”, aseguró Sada.

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For several years, Fred Neary had been seeing five doctors at the Baylor Scott & White Health system, whose 52 hospitals serve central and northern Texas, including Neary’s home in Dallas. But in October, his Humana Medicare Advantage plan — an alternative to government-run Medicare — warned that Baylor and the insurer were fighting over a new contract. If they couldn’t reach an agreement, he’d have to find new doctors or new health insurance.

“All my medical information is with Baylor Scott & White,” said Neary, 87, who retired from a career in financial services. His doctors are a five-minute drive from his house. “After so many years, starting over with that many new doctor relationships didn’t feel like an option.”

After several anxious weeks, Neary learned Humana and Baylor were parting ways as of this year, and he was forced to choose between the two. Because the breakup happened during the annual fall enrollment period for Medicare Advantage, he was able to pick a new Advantage plan with coverage starting Jan. 1, a day after his Humana plan ended.

Other Advantage members who lose providers are not as lucky. Although disputes between health systems and insurers happen all the time, members are usually locked into their plans for the year and restricted to a network of providers, even if that network shrinks. Unless members qualify for what’s called a special enrollment period, switching plans or returning to traditional Medicare is allowed only at year’s end, with new coverage starting in January.

But in the past 15 months, the Centers for Medicare & Medicaid Services, which oversees the Medicare Advantage program, has quietly offered roughly three-month special enrollment periods allowing thousands of Advantage members in at least 13 states to change plans. They were also allowed to leave Advantage plans entirely and choose traditional Medicare coverage without penalty, regardless of when they lost their providers. But even when CMS lets Advantage members leave a plan that lost a key provider, insurers can still enroll new members without telling them the network has shrunk.

At least 41 hospital systems have dropped out of 62 Advantage plans serving all or parts of 25 states since July, according to Becker’s Hospital Review. Over the past two years, separations between Advantage plans and health systems have tripled, said FTI Consulting, which tracks reports of the disputes.

CMS spokesperson Catherine Howden said it is “a routine occurrence” for the agency to determine that provider network changes trigger a special enrollment period for their members. “It has happened many times in the past, though we have seen an uptick in recent years.”

Still, CMS would not identify plans whose members were allowed to disenroll after losing health providers. The agency also would not say whether the plans violated federal provider network rules intended to ensure that Medicare Advantage members have sufficient providers within certain distances and travel times.

The secrecy around when and how Advantage members can escape plans after their doctors and hospitals drop out worries Sen. Ron Wyden of Oregon, the senior Democrat on the Senate Finance Committee, which oversees CMS.

“Seniors enrolled in Medicare Advantage plans deserve to know they can change their plan when their local doctor or hospital exits the plan due to profit-driven business practices,” Wyden said.

The increase in insurer-provider breakups isn’t surprising, given the growing popularity of Medicare Advantage. The plans attracted about 54% of the 61.2 million people who had both Medicare Parts A and B and were eligible to sign up for Medicare Advantage in 2024, according to KFF, a health information nonprofit that includes KFF Health News.

The plans can offer supplemental benefits unavailable from traditional Medicare because the federal government pays insurers about 20% more per member than traditional Medicare per-member costs, according to the Medicare Payment Advisory Commission, which advises Congress. The extra spending, which some lawmakers call wasteful, will total about $84 billion in 2025, MedPAC estimates. While traditional Medicare does not offer the additional benefits Advantage plans advertise, it does not limit beneficiaries’ choice of providers. They can go to any doctor or hospital that accepts Medicare, as nearly all do.

Sanford Health, the largest rural health system in the U.S., serving parts of seven states from South Dakota to Michigan, decided to leave a Humana Medicare Advantage plan last year that covered 15,000 of its patients. “It’s not so much about the finances or administrative burden, although those are real concerns,” said Nick Olson, Sanford Health’s chief financial officer. “The most important thing for us is the fact that coverage denials and prior authorization delays impact the care a patient receives, and that’s unacceptable.”

The National Association of Insurance Commissioners, representing insurance regulators from every state, Puerto Rico, and the District of Columbia, has appealed to CMS to help Advantage members.

“State regulators in several states are seeing hospitals and crucial provider groups making decisions to no longer contract with any MA plans, which can leave enrollees without ready access to care,” the group wrote in September. “Lack of CMS guidance could result in unnecessary financial or medical injury to America’s seniors.”

The commissioners appealed again last month to Health and Human Services Secretary Robert F. Kennedy Jr. “Significant network changes trigger important rights for beneficiaries, and they should receive clear notice of their rights and have access to counseling to help them make appropriate choices,” they wrote.

The insurance commissioners asked CMS to consider offering a special enrollment period for all Advantage members who lose the same major provider, instead of placing the burden on individuals to find help on their own. No matter what time of year, members would be able to change plans or enroll in government-run Medicare.

Advantage members granted this special enrollment period who choose traditional Medicare get a bonus: If they want to purchase a Medigap policy — supplemental insurance that helps cover Medicare’s considerable out-of-pocket costs — insurers can’t turn them away or charge them more because of preexisting health conditions.

Those potential extra costs have long been a deterrent for people who want to leave Medicare Advantage for traditional Medicare.

“People are being trapped in Medicare Advantage because they can’t get a Medigap plan,” said Bonnie Burns, a training and policy specialist at California Health Advocates, a nonprofit watchdog that helps seniors navigate Medicare.

Guaranteed access to Medigap coverage is especially important when providers drop out of all Advantage plans. Only four states — Connecticut, Massachusetts, Maine, and New York — offer that guarantee to anyone who wants to reenroll in Medicare.

But some hospital systems, including Great Plains Health in North Platte, Nebraska, are so frustrated by Advantage plans that they won’t participate in any of them.

It had the same problems with delays and denials of coverage as other providers, but one incident stands out for CEO Ivan Mitchell: A patient too sick to go home had to stay in the hospital an extra six weeks because her plan wouldn’t cover care in a rehabilitation facility.

With traditional Medicare the only option this year for Great Plains Health patients, Nebraska insurance commissioner Eric Dunning asked for a special enrollment period with guaranteed Medigap access for some 1,200 beneficiaries. After six months, CMS agreed.

Once Delaware’s insurance commissioner contacted CMS about the Bayhealth medical system dropping out of a Cigna Advantage plan, members received a special enrollment period starting in January.

Maine’s congressional delegation pushed for an enrollment period for nearly 4,000 patients of Northern Light Health after the 10-hospital system dropped out of a Humana Advantage plan last year.

“Our constituents have told us that they are anticipating serious challenges, ranging from worries about substantial changes to cost-sharing rates to concerns about maintaining care with current providers,” the delegation told CMS.

CMS granted the request to ensure “that MA enrollees have access to medically necessary care,” then-CMS Administrator Chiquita Brooks-LaSure wrote to Sen. Angus King (I-Maine).

Minnesota insurance officials appealed to CMS on behalf of some 75,000 members of Aetna, Humana, and UnitedHealthcare Advantage plans after six health systems announced last year they would leave the plans in 2025. So many provider changes caused “tremendous problems,” said Kelli Jo Greiner, director of the Minnesota State Health Insurance Assistance Program, known as a SHIP, at the Minnesota Board on Aging. SHIP counselors across the country provide Medicare beneficiaries free help choosing and using Medicare drug and Advantage plans.

Providers serving about 15,000 of Minnesota’s Advantage members ultimately agreed to stay in the insurers’ networks. CMS decided 14,000 Humana members qualified for a network-change special enrollment period.

The remaining 46,000 people — Aetna and UnitedHealthcare Advantage members — who lost access to four health systems were not eligible for the special enrollment period. CMS decided their plans still had enough other providers to care for them.

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Hospitals have spent years amassing political influence at the federal and state levels. According to the nonprofit OpenSecrets, hospitals and nursing homes’ federal lobbying spending rose from $35 million in 2000 to more than $133 million last year, a 280% increase. 

They recently had a unique opportunity to flex some of that political muscle in Montana, where the state’s Medicaid expansion program was scheduled to expire in June unless legislators and the governor renewed it. 

Conservative lawmakers and groups saw an opportunity to terminate or narrow the Medicaid expansion program that cost about $1 billion in federal and state taxpayer money last year to cover tens of thousands of low-income adults. Ultimately, the conservative Republican lawmakers who occupy state House and Senate leadership positions sought to add requirements to the program or receive concessions from hospitals, such as a promise to bolster their community benefit spending, in return for continuing the program that provides them with revenue. 

What was expected to be one of the more contentious debates of the legislative session never happened. The Medicaid expansion renewal bill sailed through with little difficulty and few changes. 

The hospitals spent the last year working to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans. That work paid off when Democratic and moderate Republicans lawmakers joined forces to push the bill through. 

Hospital lobbyists, led by the Montana Hospital Association, not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on the hospitals themselves. 

The hospitals’ political pull is acknowledged by frustrated conservative lawmakers who contend that the facilities, most of which are nonprofit organizations largely exempt from state and federal taxes, need more oversight and transparency. As Republican state Sen. Greg Hertz put it, “Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services.” 

Hospitals say they’re willing to debate ways to improve health care in Montana. But when it comes to regulations they regard as onerous — or lawmaker criticism that they are uncooperative — they aren’t shy about pushing back. “I think that we’ve demonstrated that we work on all kinds of health policies,” said Montana Hospital Association president and CEO Bob Olsen.

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Cuando la administración Trump recortó a finales de marzo más de $11.000 millones en fondos estatales destinados a la era de covid-19, los programas de recuperación de adicciones sufrieron pérdidas rápidas.

Una organización de Indiana que emplea a personas en recuperación para ayudar a compañeros con trastornos por adicciones y afecciones mentales se vio obligada a despedir a tres trabajadores. Un servicio de apoyo digital en Texas para personas con las mismas problemáticas se preparó para cerrar su línea telefónica 24/7 en una semana. Un programa de Minnesota centrado en la adicción en la comunidad de África Oriental restringió su alcance a personas vulnerables que viven en las calles.

Aunque la asistencia federal se otorgó durante la pandemia de covid y algunos de los fondos apoyaron actividades relacionadas con enfermedades infecciosas, una parte considerable se destinó a programas de salud mental y adicciones.

Estas últimas son preocupaciones crónicas en Estados Unidos que se agravaron durante la pandemia y siguen afectando a millones de estadounidenses.

Colorado, por ejemplo, recibió más de $30 millones para estos programas y Minnesota casi $28 millones, según las agencias de salud y servicios humanos de esos estados.

En muchos casos, este dinero se destinó a servicios de recuperación de adicciones, que van más allá del tratamiento tradicional para ayudar a las personas con adicciones a reconstruir sus vidas. Estos programas realizan tareas que las aseguradoras a menudo no reembolsan, como llevar a las personas a citas médicas y audiencias judiciales, preparer currículums y capacitarlas para nuevos empleos, encontrarles alojamiento y ayudarlas a establecer vínculos sociales no relacionados con las drogas.

Un juez federal bloqueó temporalmente los recortes de la administración Trump, lo que permitió que, por ahora, los programas siguieran recibiendo fondos federales. Sin embargo, muchos de los afectados afirman que no pueden recontratar fácilmente a las personas que despidieron ni reactivar los servicios que redujeron.

Además, no están seguros de poder sobrevivir a largo plazo en un entorno de incertidumbre y temor, sin saber cuándo se revocará el fallo del juez o se recortará otra fuente de financiamiento.

La semana en que se recortaron drásticamente los fondos, la administración Trump también anunció una reorganización masiva del Departamento de Salud y Servicios Humanos (HHS), que incluye la consolidación de la principal agencia federal dedicada a los servicios de recuperación de adicciones. Sin una oficina independiente como la Administración de Servicios de Abuso de Sustancias y Salud Mental, muchos defensores temen que el trabajo de recuperación, y  el dinero para apoyarlo, ya no sea una prioridad.

Aunque fundaciones privadas y gobiernos estatales podrían intervenir, es poco probable que puedan igualar las sumas de financiación federal.

“El apoyo a la recuperación se considera opcional”, dijo Racquel García, fundadora de HardBeauty, una organización de recuperación de adicciones con sede en Colorado.

Los recortes federales ponen en riesgo una subvención de cerca de $75.000 que su equipo había recibido para atender a mujeres embarazadas con adicciones en dos condados rurales de Colorado.

“Es muy fácil tomar decisiones drásticas desde arriba por dinero, cuando no tienes que ser quien le diga a la madre: ‘No podemos ir hoy'”, dijo García. “Cuando nunca tienes que sentarte frente a la madre que realmente necesitaba que estuvieras allí”.

Las afecciones de salud mental, incluidos los trastornos por consumo de sustancias, son una de las principales causas de mortalidad materna en el país. Y, aunque las muertes por sobredosis a nivel nacional han disminuido recientemente, las tasas han aumentado en muchas comunidades afroamericanas y nativas americanas. A muchas personas en el campo de las adicciones les preocupa que estos recortes de fondos puedan revertir el progreso logrado con tanto esfuerzo.

Emily Hilliard, vocera del HHS, declaró a KFF Health News que el departamento se está reorganizando para mejorar la eficiencia, fomentar un enfoque más coordinado para la adicción y priorizar la financiación de proyectos que se alineen con la iniciativa presidencial Make America Healthy Again.

“Nuestro objetivo es optimizar los recursos y eliminar las redundancias, garantizando que los servicios esenciales de salud mental y tratamiento de adicciones se presten de forma más eficaz”, dijo en un comunicado.

Pero para Garcia, no se siente como una mejora. Se siente como abandonar a madres necesitadas.

Entre el momento en que se anunciaron los recortes y cuando el juez federal los suspendió, dos mujeres atendidas por el programa de García dieron a luz, contó. Aunque la financiación de su subvención estaba en el limbo, García le dijo a su empleada que estuviera presente junto a las madres.

La empleada hizo seguimiento con visitas diarias a las nuevas mamás, las conectó con servicios de tratamiento o vivienda cuando fue necesario y las ayudó a navegar por el sistema de servicios infantiles.

“Simplemente no puedo dejar a las madres sin servicios”, dijo García. “Simplemente no puedo hacerlo”.

Tampoco puede abandonar a esa empleada, agregó. Aunque la financiación federal proporcionó la mitad de su salario, García la ha mantenido trabajando a tiempo completo.

García dijo que emplea principalmente a mujeres que están en proceso de recuperación, muchas de las cuales pasaron años atrapadas en situaciones de abuso, dependiendo de los beneficios sociales. Ahora están sobrias y han encontrado un trabajo significativo que les permite mantener a sus familias, dijo. “Creamos nuestra propia fuerza laboral de mamás que ayudan a otras mamás”.

Este tipo de desarrollo de la fuerza laboral en recuperación parece estar alineado con los objetivos del Partido Republicano de lograr que más personas trabajen y reducir la dependencia de la beneficencia.

Las prioridades de la política de drogas de la administración Trump, publicadas a principios de abril, identificaron la creación de “una fuerza laboral calificada y lista para la recuperación” y el fortalecimiento de los servicios de apoyo entre pares para la recuperación como esfuerzos cruciales para ayudar a las personas a “encontrar la recuperación y llevar una vida productiva y saludable”.

Muchos programas de recuperación capacitan a personas para empleos manuales, lo que podría respaldar el objetivo de Trump de revivir la industria manufacturera.

Sin embargo, las acciones de la administración parecen entrar en conflicto con sus objetivos declarados, dijo Rahul Gupta, quien fue el zar antidrogas durante la administración Biden.

“No se puede tener manufactura si las personas no pasan una prueba de drogas en orina o continúan sufriendo adicciones o recaídas”, afirmó Gupta, quien ahora preside GATC Health, una empresa que utiliza inteligencia artificial para el desarrollo de fármacos.

Incluso si Vuelve a haber más empleos en las zonas rurales de Estados Unidos, recortar la financiación de los servicios de recuperación y de la principal oficina federal que supervisa estos esfuerzos podría significar que menos personas sean “empleables”, afirmó Gupta.

Las investigaciones sobre programas de recuperación, en particular los dirigidos por personas con experiencia personal en adicciones, sugieren que pueden aumentar la participación en el tratamiento ordenado por el tribunal, reducir la prevalencia de reincidencia, fomentar la asistencia a las citas de tratamiento y mejorar la probabilidad de reunificación y estabilización familiar.

Billy O’Bryan ve estos beneficios a diario. Como director estatal de la organización nacional sin fines de lucro Young People in Recovery, O’Bryan supervisa cerca de una docena de filiales en Kentucky que enseñan a personas en recuperación habilidades para la vida, como manejar una cuenta bancaria y presentarse a entrevistas de trabajo, y les muestran cómo divertirse en sobriedad, mediante caminatas en grupo y juegos de Ultimate Frisbee que brillan en la oscuridad.

Brindando servicios de recuperación “es cuando realmente invertimos en su futuro”, dijo O’Bryan, quien también está en recuperación.

Seis de sus capítulos se vieron afectados por los recortes de fondos federales. Por eso ha tenido que recurrir al fondo de emergencia de la organización para pagar al personal, y reducir los eventos comunitarios, incluyendo las jornadas de limpieza en las que los miembros del capítulo recogen jeringas usadas de la calle, distribuyen naloxona, el medicamento para revertir sobredosis, y hablan con personas que consumen drogas sobre la posibilidad de recuperarse.

Actualmente está explorando iniciativas de recaudación de fondos, pero no todos sus capítulos tienen la misma capacidad.

“En una ciudad como Louisville, recaudar fondos no es un problema”, dijo O’Bryan, “pero cuando uno llega a Grayson, Kentucky”, una zona rural en los Apalaches, “no hay muchas oportunidades”.

En Minnesota, Kaleab Woldegiorgis y sus colegas de la Niyyah Recovery Initiative solían pasar horas al día en comedores sociales, eventos comunitarios, mezquitas y en las calles de barrios musulmanes y África Oriental, intentando conectar con personas que consumen drogas. Hablaban somalí, amárico y suajili, entre otros idiomas.

Esas iniciativas de divulgación les permitieron encontrar personas que necesitaban servicios de recuperación y que no los buscaban por sí mismas, afirmó Woldegiorgis, quien anteriormente asistió a los grupos de apoyo de Niyyah cuando él mismo lidiaba con la adicción.

Tras construir relaciones con las personas, Woldegiorgis podía ayudarlas a conectarse con servicios de recuperación formales que facturan a sus seguros, explicó. Pero la ayuda no siempre podía esperar a un contrato.

Una tarde, poco antes de los recortes de fondos federales, Woldegiorgis y sus colegas hablaron con un hombre que comenzó a llorar, contando cómo había querido recibir tratamiento unos días antes, pero había perdido sus pertenencias, había vuelto a consumir drogas y había terminado en la calle.

Woldegiorgis dijo que ayudó al hombre a reconectarse con una hermana y a comenzar a explorar opciones de tratamiento.

Con los recortes, es posible que Niyyah ya no pueda apoyar este tipo de trabajo comunitario. Woldegiorgis teme que esto signifique que las personas no recibirán el mensaje de esperanza que puede surgir al interactuar con personas que pueden ser sus modelos de recuperación a seguir.

“La gente no recoge folletos para recibir estos mensajes. Y la gente no lee correos electrónicos ni mira mensajes publicitarios en ls calles y encuentra inspiración”, dijo. “La gente necesita gente”.

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When the Trump administration cut more than $11 billion in covid-era funds to states in late March, addiction recovery programs suffered swift losses.

An Indiana organization that employs people in recovery to help peers with substance use disorders and mental illness was forced to lay off three workers. A Texas digital support service for people with addiction and mental illness prepared to shutter its 24/7 call line within a week. A Minnesota program focused on addiction in the East African community curtailed its outreach to vulnerable people on the street.

Although the federal assistance was awarded during the covid-19 pandemic and some of the funds supported activities related to infectious disease, a sizable chunk went to programs on mental health and addiction. The latter are both chronic concerns in the U.S. that were exacerbated during the pandemic and continue to affect millions of Americans. Colorado, for example, received more than $30 million for such programs and Minnesota received nearly $28 million, according to health and human services agencies in those states.

In many cases, this money flowed to addiction recovery services, which go beyond traditional treatment to help people with substance use disorders rebuild their lives. These programs do things that insurers often don’t reimburse, such as driving people to medical appointments and court hearings, crafting résumés and training them for new jobs, finding them housing, and helping them build social connections unrelated to drugs.

A federal judge temporarily blocked the Trump administration’s cuts, allowing the programs to continue — for now — receiving federal funding. But many of the affected programs say they can’t easily rehire people they laid off or resurrect services they curtailed. And they’re unsure they can survive long-term amid an environment of uncertainty and fear, not knowing when the judge’s ruling might be lifted or another funding source cut.

The week it slashed the funding, the Trump administration also announced a massive reorganization of the Department of Health and Human Services, including the consolidation of the main federal agency focused on addiction recovery services. Without a stand-alone office like the Substance Abuse and Mental Health Services Administration, many advocates worry, recovery work — and the funding to support it — will no longer be a priority. Although private foundations and state governments may step in, it’s unlikely they could match the tranches of federal funding.

“Recovery support is treated as optional,” said Racquel Garcia, founder of HardBeauty, a Colorado-based addiction recovery organization.

The federal cuts put at risk a roughly $75,000 grant her team had received to care for pregnant women with substance use disorders in two rural counties in Colorado.

“It’s very easy to make sweeping decisions from the top in the name of money, when you don’t have to be the one to tell the mom, ‘We can’t show up today,’” Garcia said. “When you never have to sit in front of the mama who really needed us to be there.”

Mental health conditions, including substance use disorders, are a leading cause of maternal mortality in the U.S. And although national overdose deaths have decreased recently, rates have risen in many Black and Native American communities. Many people in the addiction field worry these funding rollbacks could reverse hard-earned progress.

U.S. Department of Health and Human Services spokesperson Emily Hilliard told KFF Health News that the department is reorganizing to improve efficiency, foster a more coordinated approach to addiction, and prioritize funding projects that align with the president’s Make America Healthy Again initiative.

“We aim to streamline resources and eliminate redundancies, ensuring that essential mental health and substance use disorder services are delivered more effectively,” she said in a statement.

But to Garcia, it doesn’t feel like streamlining. It feels like abandoning moms in need.

Between the time the cuts were announced and when the federal judge paused them, two women served by Garcia’s program gave birth, she said. Though her grant funding was in limbo, Garcia told her employee to show up at the bedside for both moms. The employee followed up with daily check-ins for the new moms, connected them to treatment or housing services when needed, and helped them navigate the child services system.

“I just can’t leave moms” without services, Garcia said. “I just can’t do it.”

Nor can she abandon that employee, she said. Although the federal funding provided half of that employee’s salary, Garcia has continued to keep her on full time.

Garcia said she primarily employs women in recovery, many of whom spent years trapped in abusive situations, relying on welfare benefits. Now they’re sober and have found meaningful work that allows them to provide for their families, she said. “We created our own workforce of mamas who help other mamas.”

This type of recovery workforce development seems to align with the Republican Party’s goals of getting more people to work and reducing reliance on welfare benefits. The Trump administration’s drug policy priorities, released in early April, identified creating “a skilled, recovery-ready workforce” and strengthening peer recovery support services as crucial efforts to help people “find recovery and lead productive, healthy lives.” Many recovery programs train people for blue-collar jobs, which could support Trump’s goal of reviving the manufacturing industry.

But the administration’s actions appear to conflict with its stated goals, said Rahul Gupta, the nation’s drug czar during the Biden administration.

“You can’t have manufacturing if people can’t pass a urine drug test or continue to suffer from addiction or relapse,” said Gupta, who is now president of GATC Health, a company using artificial intelligence for drug development.

Even if jobs return to rural America, cutting funding for recovery services and the main federal office overseeing such efforts could mean fewer people are employable, Gupta said.

Research on recovery programs, particularly those run by people with personal addiction experience, suggests they can increase engagement in court-ordered treatment, reduce the prevalence of rearrest, bolster attendance at treatment appointments, and improve the likelihood of families reunifying and stabilizing.

Billy O’Bryan sees these benefits daily. As a state director for the national nonprofit Young People in Recovery, O’Bryan oversees about a dozen chapters in Kentucky that teach people in recovery life skills, such as balancing a checkbook and interviewing for jobs, and show them how to have fun in sobriety, through group hikes and glow-in-the-dark Ultimate Frisbee games.

Providing recovery services “is when we really invest in their future,” said O’Bryan, who is in recovery too.

Six of his chapters were affected by the federal funding cuts. That has meant dipping into his organization’s rainy day fund to pay staff and cutting back on community events, including cleanup days in which chapter members gather used syringes off the street, pass out the overdose reversal medication naloxone, and talk to people using drugs about the possibility of recovery.

He’s exploring fundraising efforts now, but not all his chapters have the same ability.

“In a city like Louisville, fundraising is not a problem,” O’Bryan said, “but when you get out into Grayson, Kentucky” — a rural area in the Appalachian Mountains — “there’s not a lot of opportunities.”

In Minnesota, Kaleab Woldegiorgis and his colleagues at Niyyah Recovery Initiative used to spend hours a day at soup kitchens, community events, mosques, and on the streets of East African and Muslim neighborhoods, trying to connect with people using drugs. They spoke Somali, Amharic, and Swahili, among other languages.

Those outreach efforts allowed them to “find individuals in need of recovery services” who “weren’t seeking it out themselves,” said Woldegiorgis, who previously attended Niyyah’s support groups when he was dealing with addiction.

After building relationships with people, Woldegiorgis could help them connect with formal recovery services that bill their insurance, he said. But help couldn’t always wait for a contract.

One afternoon shortly before the federal funding cuts, Woldegiorgis and his colleagues spoke with a man who began weeping, recounting how he had wanted to get treatment a few days earlier but had lost his belongings, returned to using drugs, and ended up on the street. Woldegiorgis said he helped the man reconnect with a sister and begin exploring treatment options.

With the federal funding cuts, Niyyah may no longer be able to support this type of outreach work. Woldegiorgis fears it means people won’t receive the message of hope that can come from interacting with role models in recovery.

“People don’t pick up pamphlets to receive these messages. And people don’t read emails and people don’t look at billboards and find inspiration,” he said. “People need people.”

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Tiene 17 años y vive en los suburbios de Chicago. Ama el teatro y hace poco ayudó a dirigir una obra en su escuela secundaria. Toma cursos avanzados y está trabajando en su proyecto para ser Eagle Scout.

Y ha estado en proceso de transición durante cuatro años.

Una vez por semana, este adolescente trans se inyecta testosterona. Ha congelado sus óvulos por si algún día quiere tener hijos biológicos.

Conversó con sus padres y con su psicóloga y decidió que estaba listo para el siguiente paso en su tratamiento: una cirugía en su pecho para remover tejido mamario.

“Recibir este tratamiento no es arreglar algo que esté mal en mí”, dijo el adolescente. “Solo me está ayudando a convertirme más en la persona que quiero ser y con la que me siento más cómodo, más a gusto”.

En este artículo, KFF Health News y NPR no revelan su nombre ni el apellido de su madre por temor a que puedan ser blanco de ataques por su identidad de género.

La madre del adolescente, Jane, esperaba una llamada para programar la cirugía de su hijo en el Ann & Robert H. Lurie Children’s Hospital of Chicago. Pero lo que recibió fue un mensaje de voz del hospital. Jane aseguró que sabía lo que diría, incluso antes de escucharlo: la cirugía no se iba a realizar.

Ya había leído en redes sociales que, luego de una orden ejecutiva del presidente Donald Trump, el hospital ubicado cerca del centro de Chicago, había decidido suspender las cirugías de afirmación de género en menores de 19 años

Jane llamó al hospital para confirmar que las cirugías estaban suspendidas y se lo dijo a su hijo ese mismo día, cuando llegó de la escuela.

“Le dije: ‘Vamos a cuidarte. Vamos a superar esto’”, contó Jane. “Pero fue devastador”.

“Estamos siendo amenazados”, afirmó Jane. “La comunidad trans está siendo amenazada, y los padres también”.

Su hijo le dijo que se siente herido y confundido. En noviembre, después que Trump fuera elegido, sus médicos le habían asegurado que, dentro de la legalidad, lucharían con todas sus fuerzas para apoyarlo, recordó.

Pero los directivos del Lurie decidieron cancelar las cirugías pendientes y dejar de programar otras nuevas.

“Sé que no es algo personal, sé que no me miraron directamente a mí y me dijeron: ‘Sí, no te lo mereces’”, dijo el muchacho. “Pero a veces lo siento así, sobre todo cuando veo el sentimiento general hacia las personas trans en la sociedad”.

El 7 de febrero un vocero del hospital confirmó que se pausarían las cirugías de afirmación de género.

En el área de Chicago, KFF Health News y NPR hablaron con diez pacientes o con sus padres sobre cómo este cambio afectaba sus vidas.

Todos describieron su decepción, su pérdida de esperanza de tener la cirugía algún día, y su enojo por el momento en que se produce, cuando ya se sienten amenazados y marginados por la retórica de odio que se respira en todo el país.

Estas familias temen que, con el tiempo, también se les niegue el acceso a toda la atención sanitaria relacionada con la reafirmación de género, como la terapia, los bloqueadores de la pubertad y las hormonas.

También se preguntan por qué los funcionarios de Illinois, que se habían comprometido a proteger los derechos de las personas transgénero, no han dicho nada sobre lo que está sucediendo en el Lurie Children’s y en otros lugares.

El Northwestern Memorial Hospital de Chicago también ha dejado de realizar estas cirugías a menores, según informaron las familias a KFF Health News y NPR.

La decisión del Lurie Children’s se produjo después que la orden ejecutiva de Trump del 28 de enero amenazara con recortar los fondos federales a los proveedores que ofrecieran atención médica de afirmación de género.

“En todo el país, los profesionales médicos están mutilando y esterilizando a un número cada vez mayor de niños influenciables bajo la afirmación radical y falsa de que los adultos pueden cambiar el sexo de un niño mediante una serie de intervenciones médicas irreversibles”, sentencia la orden de Trump. “Esta peligrosa tendencia será una mancha en la historia de nuestra nación y debe terminar”.

Otro paciente, un joven de 16 años de Chicago, tenía fecha para una doble mastectomía, hasta que el Lurie Children’s la canceló. KFF Health News y NPR tampoco revelan su identidad porque el joven teme por su seguridad personal.

El adolescente contó que se sintió traicionado por la cancelación. Lleva más de cinco años vendándose el pecho, lo que le causa dolor en las costillas y la espalda.

Cada mañana se enfrenta a una elección: vendarse el pecho para “pasar” completamente por hombre, o no hacerlo y vivir un día sin dolor. Evita los deportes porque no puede respirar bien cuando tiene el pecho vendado. Gran parte de su disforia de género se centra en tener pechos, dijo.

El Lurie Children’s consideró que la cirugía del adolescente era “médicamente necesaria”, según los documentos que su familia compartió con KFF Health News y NPR.

“La decisión de Lurie sentó un precedente no solo para otros proveedores de atención médica, sino también para sus pacientes”, dijo el adolescente. “El hospital ha demostrado que ya no es el refugio seguro que han afirmado ser durante tantos años”.

Muchos de los pacientes de Lurie Children’s fueron derivados al Northwestern Memorial Hospital, un destacado hospital de investigación cercano, para tener sus cirugías. Pero sus citas iniciales en Northwestern fueron canceladas posteriormente. Un vocero de la institución rechazó responder a los repetidos pedidos de comentarios.

A los padres cuyos hijos transgénero reciben otros tratamientos médicos en Lurie Children’s, como terapia hormonal, les preocupa que el hospital también deje de proporcionar esos servicios en el futuro.

“Si no podemos conseguir estrógenos en un año, ¿qué haremos?”, se pregunta la madre de una niña transgénero de 15 años. KFF Health News y NPR tampoco revelan su nombre por el mismo temor que los otros. “Los padres que tienen recursos para hacerlo están discutiendo la posibilidad de marcharse del país”, afirma.

La política de suspender las cirugías

En un comunicado, el doctor Robert Garofalo aseguró que escucha y comprende la frustración de los pacientes y de sus familias. Es el director y fundador del Gender Development Program del Lurie Children’s.

“He dedicado mi vida a estos niños, adolescentes y sus familias”, afirmó Garofalo. “Como alguien que ha pasado toda su trayectoria profesional en el Lurie Children’s, puedo asegurarles que los jóvenes y sus familias son fundamentales para esta institución. Es muy importante que dejemos en claro que esta decisión ha sido muy difícil y se ha tomado en circunstancias sin precedentes y bajo presiones externas”.

Garofalo escribió que la decisión de pausar las cirugías se basó en la creencia del hospital de que de ese modo podría ayudar a salvaguardar la mayoría de los servicios clínicos que ofrece este programa.

Los investigadores han comprobado que las cirugías entre los jóvenes trans son poco frecuentes.

Luego de la orden ejecutiva de Trump, el fiscal general de Illinois, Kwame Raoul, y 14 de sus pares de otros estados se comprometieron a proteger el acceso al tratamiento.

En un comunicado, Raoul afirmó que la Ley de Derechos Humanos de Illinois prohíbe a los proveedores de atención médica discriminar a los pacientes por su identidad de género.

Sin embargo, recientemente el fiscal declaró a KFF Health News y NPR que sería difícil sostener que Lurie y Northwestern están infringiendo la ley estatal.

“No considero que Lurie o Northwestern sean los malos de la película”, afirmó Raoul, demócrata, tras un acto celebrado el 1 de abril en un restaurante cerca del centro de Chicago. Allí, Raoul le pidió a una sala repleta de líderes cívicos que se opusieran a las intimidaciones de la Casa Blanca.

Raoul opinó que la decisión de los hospitales no puede considerarse discriminación, “cuando el Gobierno federal te apunta con una pistola a la cabeza”.

Cuando KFF Health News y NPR le preguntaron el gobernador demócrata JB Pritzker si el Lurie Children’s estaba infringiendo la Ley de Derechos Humanos, el centro no respondió. Pero sí dijo que los hospitales están siendo “chantajeados” para limitar la atención.

“No es culpa de los hospitales”, afirmó categóricamente Pritzker. “Créanme. Conozco a la gente del Lurie Children’s Hospital, conozco a la gente que dirige la mayoría de estos hospitales y puedo decirles que quieren hacer lo correcto por sus pacientes”.

A pesar de que jueces federales han emitido sentencias que bloquean la orden ejecutiva de Trump, el Lurie Children’s y hospitales de todo el país han suspendido las cirugías y otros tipos de tratamientos de afirmación de género

Un hospital que enfrenta un futuro legal incierto

El Lurie Children’s Hospital tiene uno de los programas médicos de afirmación de género más antiguos del país, lanzado en 2013, y todavía ofrece terapia hormonal, bloqueadores de la pubertad y servicios de salud conductual.

Los proveedores de servicios médicos, los pacientes y sus padres aluden frecuentemente a las numerosas investigaciones que subrayan el papel crucial e incluso la capacidad de salvar vidas que puede tener la atención médica transgénero. Por ejemplo, ayudando a disminuir la depresión y la ansiedad.

El acceso a la afirmación médica de género cuenta con el aval de la American Academy of Pediatrics (Asociación Americana de Pediatría) y la American Medical Association (Asociación Médica Americana).

La comunidad transgénero es pequeña y las familias sienten que esa es una de las razones por las que son atacados.

En 2023, alrededor del 3% de los estudiantes de escuela secundaria en el país se identificaron como transgénero, y un 2% adicional declaró que estaba cuestionando su identidad de género, según un estudio de los Centros para el Control y la Prevención de Enfermedades (CDC).

Los jóvenes transgénero experimentan más violencia, acoso y pensamientos suicidas que sus compañeros no trans, afirma el estudio de los CDC que agrega que, en el último año, aproximadamente 1 de cada 4 estudiantes que eran transgénero o cuestionaban su identidad de género intentó suicidarse.

En los últimos años, muchos estados han intensificado las restricciones en el acceso de los menores a la atención de afirmación de género, informó KFF, una organización sin fines de lucro de información sobre salud que incluye a KFF Health News.

Un poco más de la mitad del país —27 estados— prohíbe o dificulta el acceso a esos tratamientos. Recientemente, Iowa dio un nuevo paso en esa dirección al eliminar las protecciones de derechos civiles para las personas trans o no binarias.

Elizabeth Mack, médica especialista en cuidados intensivos pediátricos en Carolina del Sur, ha sido testigo de las consecuencias de esa prohibición en su estado. Ha tratado a varios niños que intentaron suicidarse o murieron por suicidio porque no pudieron acceder al tratamiento, según surgió de las entrevistas que mantuvo con los mismo pacientes o con sus familiares.

“Es una de esas situaciones que te dejan una marca que no olvidarás, imborrable”, dijo Mack sobre su experiencia.

Tuvo su cirugía, pero sigue preocupado

Ben García, de 18 años, estudiante de último curso de secundaria en Chicago, ofrece una visión de su vida después de la cirugía. En 2023, tuvo una doble mastectomía. Cree que sin la atención médica que ha recibido durante los últimos años, sería una persona diferente, probablemente más retraída y con menos confianza en sí mismo.

“Esta atención me ha permitido sentirme mucho más cómodo con quien soy y con la forma en que me presento ante el mundo”, explicó García.

García y su madre, Michelle Vallet, destacan que el camino hacia la cirugía fue un proceso lento, que se llevó a cabo con gran cuidado y mucha conversación.

Una vez que comenzó la pubertad, García empezó a tener dudas y quiso explorar qué significaría retrasar los cambios que se estaban produciendo en su cuerpo. En ese momento, tenía unos 10 u 11 años.

Vallet se puso en contacto con el Lurie Children’s Hospital y programó una primera cita para García. Contó que ese primer encuentro duró tres horas.

Según Vallet, gran parte de las personas malinterpreta el proceso, y los niños transgénero se han convertido en algunos de los pacientes bajo más escrutinio del país.

“Creo que la gente piensa que los niños trans se despiertan un día y dicen: ‘¡Quiero ser un niño!’”, dijo Vallet. “Entonces van a la clínica de género y, ¡pum! Así no es cómo funciona este tratamiento”.

Vallet, su hijo, y el personal médico del Lurie Children’s hablaron largamente sobre los riesgos del tratamiento, los posibles efectos secundarios y los siguientes pasos.

García se sometió a evaluaciones de salud mental en varias citas antes que pudiera tomar bloqueadores de la pubertad para evitar que su cuerpo experimentara cambios. Luego comenzó a recibir dosis bajas de la hormona testosterona. Poco a poco, su voz se volvió más grave y le creció vello facial.

El joven sigue recibiendo inyecciones de testosterona cada semana y va a revisiones en el Lurie Children’s para controlar sus niveles hormonales. Ahora lo preocupa que esta atención también se vea afectada. A su madre le inquieta que el hospital suspenda progresivamente todo tipo de atención para la reafirmación de género.

“Es desgarrador ver que hospitales tan grandes como el Lurie obedecen por adelantado”, dijo Vallet, refiriéndose a la orden ejecutiva de Trump que amenaza con retirar los fondos federales que reciben los hospitales. “Se siente como una traición. … Hay dinero federal en juego, pero en un momento dado, en la situación en la que nos encontramos, hay que decir: ’No, no voy a hacerlo”’.

El joven de 17 años que vive en los suburbios y nunca consiguió una fecha para la cirugía, está esperando respuesta de otros hospitales. Tiene una cita preliminar con un hospital en mayo, pero hay lista de espera. Probablemente pasarán meses antes que pueda operarse.

Está convencido de que la atención médica que ya ha recibido le ha salvado la vida y le ha dado esperanzas para el futuro. Piensa en estudiar Medicina en la universidad, inspirado por la atención que recibió durante todo este proceso.

Su madre, Jane, dice que el muchacho está saliendo adelante.

“Estoy muy orgullosa de él, porque todo lo que dice y hace tiene sentido”, dijo mientras su hijo explicaba todo lo que implica poder operarse. “Tiene claridad, y la gente lo está escuchando, lo entiende, y le está proporcionando lo que necesita para vivir”.

Este artículo es parte de una alianza que incluye a WBEZ, NPR, y KFF Health News.

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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He’s 17 and lives in the Chicago suburbs. He loves theater and recently helped direct a play at his high school. He takes competitive AP courses and is working on his Eagle Scout project.

And he’s been on a journey for four years.

Once a week, the transgender teen injects testosterone into his body. He’s had his eggs frozen in case he wants to have his own biological children one day. He talked with his parents and his psychologist and decided he was ready for the next step of treatment: top surgery to remove breast tissue.

“Getting this treatment isn’t fixing something that’s wrong with me,” the teen said. “It’s just helping me grow more into who I want to be and who I can feel most comfortable existing as.”

KFF Health News and NPR are not identifying the teen by name or using his mother’s last name because both are concerned he could be targeted for being transgender.

The teen’s mom, Jane, waited for a call to schedule the surgery at Ann & Robert H. Lurie Children’s Hospital of Chicago. Then, she received a voicemail from the hospital. She said she knew what the message would be even before she listened to it: The surgery wouldn’t happen.

She had already read on social media that Lurie Children’s, located near downtown Chicago, would pause gender-affirming surgeries for people younger than 19 in the wake of an executive order from President Donald Trump.

Jane called Lurie back to confirm that surgeries were on hold, then told her son when he got home from school that day.

“I said, ‘Hey, we are going to take care of you,'” she recalled. “‘We will make it through this.'”

It was devastating, Jane said.

“We are being threatened,” she said. “The trans community is being threatened, and parents are being threatened.”

Her son said he feels hurt and confused. His doctors told him after Trump was elected in November that they would fight as hard as they legally could to support him, he recalled. But then Lurie’s leaders decided to cancel pending surgeries and stop scheduling new ones.

“I know that it’s not like a personal thing, like they didn’t look at me directly and go, ‘Yeah, you don’t deserve that,'” the teen said. “But it kind of feels like it sometimes, especially when a lot of what the sentiment has been, in general, towards trans people in society.”

On Feb. 7, a Lurie Children’s spokesperson confirmed the hospital would pause gender-affirming surgeries.

KFF Health News and NPR spoke with 10 patients or their parents in the Chicago area about how this affects their lives. They described their disappointment, their loss of hope for one day having a procedure, and their anger at the timing, when they already feel threatened and marginalized by hateful rhetoric around the country.

These families fear that they eventually could lose access to all gender-affirming care, such as therapy, puberty blockers, and hormones. They’ve also questioned why Illinois officials who have vowed to protect transgender rights have been quiet on what’s happening at Lurie Children’s and elsewhere. Northwestern Memorial Hospital in Chicago has also stopped such surgeries for minors, families told KFF Health News and NPR.

Lurie Children’s decision came after Trump’s executive order on Jan. 28 threatened to cut federal funding to health care providers offering gender-affirming medical care.

“Across the country today, medical professionals are maiming and sterilizing a growing number of impressionable children under the radical and false claim that adults can change a child’s sex through a series of irreversible medical interventions,” according to Trump’s order. “This dangerous trend will be a stain on our Nation’s history, and it must end.”

Another patient, a 16-year-old boy from Chicago, had a surgery date for a double mastectomy procedure — until Lurie Children’s canceled it. KFF Health News and NPR are not identifying him because he fears for his personal safety.

The teen felt betrayed by the cancellation, he said. He has been binding his chest for more than five years, but doing so causes rib and back pain.

Every morning, he faces a choice: bind his chest to fully “pass” as male, or skip that and experience a day without pain. He avoids sports because he can’t breathe as well when his chest is bound. A large part of his gender dysphoria is centered on having breasts, he said.

Lurie Children’s deemed the teen’s surgery “medically necessary,” according to medical documents his family shared with KFF Health News and NPR.

“Lurie’s decision set a precedent not only for other care providers but also for their patients,” said the teen. “They have established that they are no longer the safe haven they have claimed to be for so many years.”

Many of Lurie Children’s patients were referred for surgery to Northwestern Memorial Hospital, a prominent research hospital nearby. Their initial Northwestern appointments were later canceled. A Northwestern spokesperson declined repeated requests to comment.

Parents whose transgender children are receiving other types of medical care at Lurie Children’s, such as hormone therapy, worry about what the hospital might stop providing next.

“If we can’t get estrogen in a year, what do we do?” says the mother of a 15-year-old transgender girl. KFF Health News and NPR are not naming her because she fears retaliation against her daughter if she is identified. “Parents with means are talking about leaving the country.”

The Politics of Pausing Surgeries

In a statement, physician Robert Garofalo said he hears and understands the frustration. He is the founding director of the Gender Development Program at Lurie Children’s.

“My life’s work has been devoted to these children, adolescents, and their families,” Garofalo wrote. “As someone who has spent his entire career at Lurie Children’s, I can assure you these kids and these families matter to this institution. It’s important to know that this decision was painstakingly difficult, and it was made amid unprecedented circumstances and external pressures.”

The hospital’s decision, Garofalo wrote, was based on the belief it could help safeguard most of the clinical services offered by his program.

Surgery among trans youth is rare, researchers have found.

After Trump’s executive order, Illinois Attorney General Kwame Raoul and 14 of his peers in other states vowed to protect access to treatment. In a statement, Raoul said the Illinois Human Rights Act prohibits health care providers from discriminating against patients because of their gender identity.

But recently he told KFF Health News and NPR that it would be hard to make a case that Lurie and Northwestern are violating state law.

“I don’t look at Lurie or Northwestern as a bad actor here,” Raoul, a Democrat, said after an event on April 1, at which he told a packed room of civic leaders in a restaurant near downtown Chicago to stand up against intimidation by the White House. It’s not discrimination, Raoul said, “when the federal government is holding a gun to your head.”

When KFF Health News and NPR asked whether Lurie Children’s is violating the Human Rights Act, Democratic Gov. JB Pritzker didn’t answer. But he did say hospitals are being “blackmailed” into limiting care.

“This is not the hospitals’ fault,” Pritzker said. “Believe me. I know the people at Lurie Children’s Hospital, I know the people who run most of these hospitals, and I can tell you that they want to do the right thing for their patients.”

Lurie Children’s and some hospitals across the country have paused surgeries or other types of gender-affirming treatment despite federal judges who issued rulings blocking Trump’s order.

A Hospital Confronts an Uncertain Legal Future

Lurie Children’s has one of the oldest gender-affirming care programs in the country, launched in 2013, and still offers hormone therapy, puberty blockers, and behavioral health services.

Medical providers, patients, and parents point to research that underscores the crucial and even lifesaving role that transgender medical care can provide, such as helping decrease depression and anxiety. Access to gender-affirming care is supported by the American Academy of Pediatrics and the American Medical Association.

The transgender community is small, and families say they feel targeted because of this. In 2023, around 3% of high school students in the U.S. identified as transgender, and an additional 2% identified as questioning, according to a 2023 study from the federal Centers for Disease Control and Prevention.

Transgender youths experience more violence, bullying, and suicidal thoughts than their non-trans peers, the CDC study found. About 1 in 4 students who were transgender or questioned their gender identity attempted suicide in the past year, the study found.

In recent years, many states have cracked down on access to gender-affirming care for minors, according to KFF, a health information nonprofit that includes KFF Health News. Just over half the country — 27 states — ban or restrict access. Recently, Iowa took the step of stripping civil rights protections from people who are trans or nonbinary.

Elizabeth Mack, a pediatric critical care physician in South Carolina, has witnessed the consequences of a ban in her state. She has treated several children who attempted suicide or died by suicide because they couldn’t access treatment, according to conversations she had with the patients or family members.

“It’s just one of those things that leaves a mark that I can’t unsee,” Mack said of her experience.

This Teen Already Had His Surgery but Still Worries

Ben Garcia, 18, a Chicago high school senior, offers a glimpse into life post-surgery. In 2023, he had a double mastectomy. He believes that without the medical care he’s received for the past several years, he would be a different person, likely more withdrawn and less confident.

“This care has allowed me to be a lot more comfortable in who I am, in the way that I present myself to the world,” Garcia said.

Garcia and his mother, Michelle Vallet, emphasized that his path to surgery was a slow process that proceeded with care and deliberation. Once puberty started, Garcia started to have questions and wanted to explore what it would mean to delay the changes occurring in his body. At that time, he was around 10 or 11 years old.

Vallet reached out to Lurie Children’s Hospital and booked a first appointment for Garcia. It lasted three hours, she said.

Much of the public misunderstands the process, Vallet said, and transgender kids have become some of the most scrutinized patients in America.

“I think they feel like trans kids are just one day waking up saying, ‘I want to be a boy,'” Vallet said. “They go to the gender clinic, wham bam. That’s not how this care happens.”

She, her son, and the medical staff at Lurie Children’s talked through the risks of treatment, the possible side effects, and the next steps.

Garcia went through mental health evaluations over multiple appointments before he could take puberty blockers to stop his body from going through changes. Then he started taking low doses of testosterone, a hormone. Gradually, his voice dropped, and he grew facial hair.

Garcia still takes testosterone shots every week and gets checkups at Lurie Children’s to monitor his hormone levels. He’s now nervous this care could also be affected. His mother is worried that the hospital might suspend all types of gender-affirming care.

“It’s heartbreaking to see hospitals as big as Lurie comply in advance,” Vallet said, referring to the executive order’s threats to cut hospital payments. “It feels like a betrayal. … There’s federal dollars on the line, but at a certain point in the environment we’re in, you have to say, ‘No, I’m not doing this.'”

The suburban 17-year-old who never got a surgery date is waiting to hear back from other hospitals. He has a preliminary appointment booked at one hospital in May, but there’s a waitlist. Surgery is likely months away.

He’s convinced that the medical care he’s already received has saved his life and given him hope for his future. He thinks about studying medicine in college, inspired by the care he’s received.

His mom, Jane, said he’s thriving.

“I’m really proud of him, because he just makes sense,” Jane said as her son described all that’s involved in being able to have surgery. “He makes sense, and people are listening to him make sense and giving him what he needs to exist.”

This article is from a partnership that includes WBEZ, NPR, and KFF Health News.

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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This story can be republished for free (details).

HELENA, Mont. — As Republican legislative leaders in Montana girded for this year’s battle over whether to extend Medicaid expansion in the state, they took aim at one of the program’s biggest backers: hospitals.

If Montana’s hospitals wanted to extend the government health insurance program that cost taxpayers about $1 billion in 2024, and benefit from that revenue, they should give something back, such as additional community health care services and benefits, GOP leaders argued as the session began in January.

But instead, they found out just how formidable a political force the state’s hospitals can be. The hospitals not only helped steamroll Medicaid expansion through the legislature, but they also defeated nearly all attempts to add new requirements to the program and to place new regulations on hospitals themselves.

Hospitals opposed and defeated bills to impose price caps and to prominently post their charges and killed an attempt to redirect Medicaid funds raised by a hospital tax.

Most Montana hospitals are nonprofit organizations that are largely exempt from state income and property taxes. Legislators requested drafts of several bills to scrutinize hospitals’ “community benefits,” the services they provide for free or at discounted costs that justify their nonprofit status, but did not introduce them during the session.

The only such bill introduced has been significantly amended, at the hospitals’ request.

The state hospital lobbyists’ political pull has frustrated conservative lawmakers in leadership positions who are seeking more oversight of and transparency from the hospitals.

“Hospitals don’t seem to want to come to the table to discuss anything, whether it’s transparency, controlling costs, or providing more information to the public on services,” said Republican state Sen. Greg Hertz, who sponsored the price-cap bill that was rejected on the Senate floor this month.

Hospitals say they’re willing to debate ways to improve health care in Montana, and they point to Medicaid expansion as a program whose benefits flow to all corners of the state.

Yet when it comes to regulations they regard as onerous or criticism that they’re uncooperative partners on health care policy, the hospitals aren’t shy about pushing back.

“I don’t think I’ve ever been approached by any of them on reforming the health care system,” Montana Hospital Association president and CEO Bob Olsen said of the hospitals’ critics in the legislature. “I think that we’ve demonstrated that we work on all kinds of health policies.”

Republicans hold big majorities this legislative session and their conservative leaders — most of whom opposed extending Medicaid expansion — have often seen hospitals as a political foe.

But Montana’s hospitals have always been a strong lobby in the state, with bipartisan appeal. The state’s 63 hospitals employ about 30,000 people, according to the MHA, including many of the state’s physicians, and have multiple lobbyists at the Capitol, both on their own and through the hospital association.

They also have a strong ally in state Rep. Ed Buttrey, a moderate Republican who also is on the board of directors of Benefis Health System. Buttrey sponsored the original 2015 Montana Medicaid expansion bill and bills to renew the program in 2019 and this year.

In the past year, hospitals worked to form a coalition with businesses, health clinics, physician groups, insurers, and advocates for people with low incomes to push for extension of Medicaid expansion, which provides government health coverage to about 74,500 low-income, nondisabled Montanans.

Medicaid expansion had been set to expire this June, but the bill extending it breezed through the legislature, passing by comfortable margins in February, with bipartisan support. Republican Gov. Greg Gianforte signed it into law last month.

The MHA has a political action committee that donates to multiple lawmakers of both parties. In 2024, it paid particular attention to allies of Medicaid expansion.

The PAC gave $61,000 to the Montana Democratic Party and $75,000 to a political committee that supported moderate Republicans in contested GOP legislative primaries last June, according to filings with the state commissioner of political practices.

The majorities that passed Medicaid expansion in February included every Democrat in the legislature and many of the moderate Republicans supported by the political committee financed partly by the MHA.

Democrats also have been voting almost universally against bills that would impose new regulations on hospitals.

Hertz’s bill, which would have capped larger hospitals’ prices at 300% of the Medicare rate for most procedures, failed on the Senate floor this month on a 26-24 vote. All but one Democrat and nine Republicans voted against it.

State Sen. Cora Neumann, a Democratic member of the Senate Public Health, Welfare and Safety Committee, also voted against a bill requiring nonprofit hospitals to show that their community benefits meet or exceed the value of their property tax exemptions.

Neumann said she supports better access to affordable care in Montana but that “the policies we have been presented with are not well thought out and raise concerns for me about government overreach.”

State Rep. Jane Gillette, a Republican who chaired the legislative panel overseeing health care spending in the state budget, tried last month to redirect a small portion of Medicaid expansion funds — $7 million a year — to certain hospitals. The money is part of $365 million generated annually by a tax on hospital services, and the corresponding federal match, according to Olsen, the hospital association leader.

Half of the $7 million would go to smaller, independent hospitals and the other half would be distributed to hospitals showing “exceptional health outcomes and efficiencies,” she said.

The House Appropriations Committee agreed March 24 to insert her proposals into the session’s main budget bill.

But a week later — after hospitals lobbied against the change — the same committee torpedoed language in a separate bill that would have implemented the changes. The next day, on the House floor, all but one Democrat and 25 Republicans formed a two-thirds majority to remove the funding change from the budget bill.

“That tells you what a stronghold the hospitals have,” Gillette said. “Even a slight variation to our current system is not acceptable to them.”

Olsen said the change would have taken money from some larger hospitals and moved it elsewhere, and not necessarily to the smaller hospitals Gillette hoped to help.

“She approached us, but never tried to work with us,” he said. “It wasn’t going to reach those hospitals that she wanted to reach.”

Senate President Matt Regier, a Republican, made a last attempt to insert Gillette’s amendment into the state budget bill on the Senate floor on April 17, but it was rejected on a 27-23 vote, with all 18 Democrats and nine Republicans voting no.

Hospitals are, however, working with Regier on his community-benefit reporting measure — the last-standing bill that might impose new regulations on hospitals.

The bill says if the community benefits reported by nonprofit hospitals don’t equal or exceed the value of their exemption from property taxes, they must pay the difference into a fund that would be distributed to small, “critical access” hospitals.

During the bill’s initial hearing April 2, Regier — a Medicaid expansion opponent and sometimes sharp critic of the hospitals — said he was open to amendments that hospitals might find acceptable.

The original bill cleared the Senate April 5 on a party-line, 30-18 vote, with Republicans in favor. Then, in a House committee meeting on April 17, Republicans attached amendments that had the hospitals’ blessing and sent the bill to the House floor.

The changes delay the law’s effective date until 2027 and more specifically define the community benefits that must be reported and the potential property tax liability to which hospitals must match their benefit.

Olsen said the MHA will support the amended bill.

“The truth of it is, hospitals have always far exceeded the tax exemption for community benefits, on the spending they do,” he said. “Some might fall short, from time to time — but over the long haul, they exceed those exemptions.”

Regier’s attempt to quantify the amount and compare it to nonprofit hospitals’ tax exemption is not unreasonable, Olsen said: “I’m confident hospitals can do it.”

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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